But within weeks, the normally easygoing and active child was behaving strangely. Ethan cried while playing baseball, a game he鈥檇 always loved, started getting in trouble at school, and would get suddenly angry for no reason. Early puberty, his doctor suggested.

Then came the seizures. First Ethan鈥檚 legs would start shaking uncontrollably. Then his entire body seized. Ethan鈥檚 parents, Erin and Gabriel Martinez, rushed him to the emergency room near their home in Perris, in Riverside County, California. Finally, after several ER visits, he was admitted to Loma Linda University Children鈥檚 Hospital near San Bernardino, where he was diagnosed with , a dangerous autoimmune disease that causes brain swelling. The Martinezes watched their once-healthy son lose his ability to speak, walk, eat and remember.

Every day on his way home from work as a truck driver, Gabriel Martinez would sob.

鈥淚 didn鈥檛 know how to handle it,鈥� he said. 鈥淚 thought, 鈥業 can鈥檛 do nothing to help him out.鈥欌€�

Having a child with a chronic illness or disability is emotionally devastating for many families. For the Martinezes, Ethan鈥檚 illness brought tremendous worry and stress. The parents struggled to hold their marriage together as they grappled with the intensity of suddenly caring for a child with special needs. Their younger son, Nathan, who was 6, also struggled with the change.

And for Ethan, the illness affected both his physical and mental health. He had to relearn how to walk, eat, and go to the restroom. He still struggles to talk and has seizures. The brain swelling led to long-term developmental delays and behavioral problems, including angry outbursts.

Then hospital medical staff suggested the family enroll in a therapeutic program called Mastering Each New Direction, or . Run in collaboration with the hospital鈥檚 Behavioral Medicine Center, it鈥檚 one of the few state programs providing mental health treatment specifically for children with chronic medical conditions and their families.

Children and parents attend the program for three hours, three times a week, over about two months. Kids receive group therapy with other children, with their family, and in groups of families. They may also receive individual therapy. The program also teaches parents how to cope with the stress, fear, and guilt that often accompany having a child with a challenging illness.

Research on the program demonstrates its impact. One study of 22 families enrolled in MEND found that their reported health and well-being after completing the program increased around 76%. Children were less likely to end up back in the hospital, and the number of missed school days dropped from an average of 12 a month to just two. A later study published in 2016 found that children who completed MEND had lower levels of stress hormones in their bodies, an effect that remained three months later. Screenings revealed that their brain functioning and mental health improved too.

鈥淭heir shoulders change,鈥� said Brian Distelberg, who runs MEND and is the director of research at the Behavioral Medicine Center. 鈥淭hey鈥檙e all stressed when they come in. They鈥檙e more relaxed and comfortable when they鈥檙e leaving.鈥�

Racked With Guilt

About s, and asthma. The rate is even higher among children of color, because of systemic racism that affects the conditions in which these children live and grow.

children with chronic illnesses are at least twice as likely as healthy children to develop a mental health disorder. They鈥檙e at higher risk for neglect and abuse. Their caregivers and siblings are also at increased risk for mental distress.

Yet there are few mental health treatment programs that cater to the needs of these children and their families.

鈥淚t鈥檚 kind of overlooked,鈥� Distelberg said. 鈥淲e always think of [these children] as, they have this physical health condition and we can really get behind that. But oftentimes what comes with that is all these additional stressors for the individual patient as well as the family system. Everything from the stress of just trying to deal with [the illness], to the financial stress that often comes with physical health challenges.鈥�

Children with chronic medical conditions often suffer multiple blows to their mental well-being, said Daniel Tapanes, a psychotherapist who designed the MEND program and now helps to coordinate it. Children have expressed feeling like they鈥檙e 鈥渂roken,鈥� a burden on their families, or that they don鈥檛 belong because they look different from their peers or can鈥檛 participate in activities such as sports, sleepovers, and parties.

Teenagers in particular can struggle as they begin the natural process of becoming more independent. It鈥檚 common for teens to stop following their prescribed treatment because they want to feel more 鈥渘ormal.鈥� This can exacerbate their health condition and pile stress on the family, Distelberg said.

Meanwhile, some parents are racked with guilt and shame over their child鈥檚 illness. Erin Martinez, for example, said she would imagine she was somehow to blame for Ethan鈥檚 illness because she had enrolled him in too many after-school activities, or wonder if she could have done more to get him treatment sooner.

Unbearable Tension

It took the Martinez family a couple of tries in the MEND program before they reaped the benefits. Ethan first enrolled at 9 years old, and saw some results. But Erin and Gabriel Martinez said they were too caught up in their own stress and marital conflict to make the changes required of them to support Ethan.

More results came after Ethan enrolled in MEND again last year at age 15. His struggles had increased as he entered his teenage years, and tension in the household was unbearable, Erin Martinez said.

At MEND, which was held online during the pandemic, the therapist working with Ethan figured out that the teenager wanted more time and attention from his mom and dad. She suggested they do more family activities together. One thing Ethan really wanted, she said, was to play catch with his dad.

Gabriel Martinez began taking Ethan out to the yard to play ball after dinner. 鈥淏y the end of the week, his attitude, his aggression had completely changed,鈥� Martinez said. 鈥淚 was like, 鈥楢re you kidding me? Is that it?鈥欌€�

Meanwhile, Erin Martinez realized she needed therapy too. Her own stress, anxiety, and feelings of guilt had become overwhelming. She enrolled in an adult version of the MEND program, where she received therapy that helped her learn better coping skills. She and Gabriel Martinez received couples鈥� therapy as part of the program.

Nathan, 13, enrolled in MEND too. Through therapy, he started to talk about the stress and sadness he鈥檇 felt watching his older brother鈥檚 health change.  

鈥淚t Gives Me Goose Bumps鈥�

Altering how family members relate to each other is a big focus of the MEND program, Tapanes said. By changing the family dynamics, children鈥檚 mental health usually improves, he said. Since the program launched in 2009, he and Distelberg said, they鈥檝e witnessed numerous children become not only mentally healthier but physically healthier too. They鈥檝e seen kids with diabetes enter the program pale and emaciated from not adhering to treatment, and left with normal weight and blood sugar levels; children who no longer need emergency organ transplants after exiting the program because their body is better managing the disease; and one child gravely ill with lupus who made a full recovery.

鈥淚t gives me goose bumps,鈥� Tapanes said.

MEND staff are now training other providers on how to run similar programs in Lake County in Northern California, and Chicago. The program has also been shown to save money for families and health insurers. One analysis found that it reduced spending on direct and indirect medical care by 86%. These results highlight the connection between mental and physical health. More medical providers and insurance companies need to recognize this link, Distelberg said.

鈥淲e can鈥檛 continue to treat people as if their physical health is over here, and their mental health is over here,鈥� Distelberg said. 鈥淲e need to bring those together.鈥�

For the Martinez family, life has improved dramatically. Erin Martinez said her sons now play together without getting angry. Nathan talks to his parents about his day and how he鈥檚 feeling. Ethan still gets angry and upset at times because of his brain injury and difficulty communicating, but his family has learned what triggers him, and to redirect his emotions by playing catch or a board game. The mental health treatment has also led to better physical health for Ethan, resulting in fewer hospitalizations

And Gabriel and Erin Martinez have gone from the brink of divorce before joining MEND to talking about renewing their marriage vows, Erin Martinez said.

鈥淭his program saved our family,鈥� she said.

This story was produced in partnership with the and .

The day after the 2016 presidential election, I visited New Orleans, one of the most politically progressive cities in the South. While wandering the art studios in the Bourbon Street area, I encountered a white sculptor who, upon hearing that I taught at Duke Divinity School, burst into zealous tears. Her collar soggy with snot and runny mascara, she articulated the disillusionment that many New Orleanians felt in the aftermath of Trump鈥檚 election.

鈥淭his election is so devastating,鈥� she lamented. 鈥淚s there any hope? Where is God in the midst of this?鈥�

Her sorrow didn鈥檛 surprise me; after all, over 80% of New Orleans鈥� voters had opted for Hillary Clinton. Moreover, I understood her sense of abandonment in the political realm and her earnest questioning of God鈥檚 reliability in the midst of her pain. She wasn鈥檛 just experiencing a finite terror, like 鈥渢his particular person or situation is unsafe.鈥� Rather, she was experiencing a comprehensive terror, like 鈥渢he world is completely unsafe, and I now know I cannot trust the people and institutions I鈥檝e trusted in the past.鈥� This type of terror is incredibly destabilizing, and her spiritual belief system crumbled under its weight.

Is there any hope? This is a question Black people have been collectively asking for centuries as we have been traumatized by one bogus elected official after another. It鈥檚 a question that Black LGBTQ+ people have been asking as they encounter condemnation and rejection in many Black church spaces. It鈥檚 a question that more and more white women, like the New Orleanian sculptor, have been asking since Donald Trump was elected and Justice Brett Kavanaugh was appointed to the Supreme Court despite being accused of sexually assaulting Dr. Christine Blasey Ford, a white woman. It鈥檚 a question many American citizens have asked of a government supposedly founded on 鈥淐hristian鈥� values, yet that systematically terrorizes, imprisons, and divides the families of undocumented immigrants. It鈥檚 a question that people are asking as the COVID-19 pandemic continues to collaborate with social inequality to ravage the most vulnerable.

All over the world, the belief in a God who is with us and for us is cracking.

The question reverberates in our souls during times of terror, because spirituality, in part, is about relying on a Power greater than ourselves. During times of fear, uncertainty, and distress, many spiritual people look to the Divine for protection, clarity, and guidance.

What happens when you can鈥檛 trust the Power you鈥檙e supposed to rely on? What happens when that Power is so closely linked to human greed, political power, patriarchy, and white supremacy that it is no longer recognizable? Being both Black and female in the aftermath of Trump鈥檚 election in 2016, I began to connect the dots between the cultural idea of a white male God and my incessant fear as a Black woman. There was just one problem. I had no idea where to turn. Imagination is theology; we can only believe what we can imagine. And our cultural landscape hasn鈥檛 given us many tools to imagine a non-white, non-male God.

My desire to be transformed by the Sacred Black Feminine sent me deep into the dark forests of my trauma, so I could be healed.

My whole life, I had been indoctrinated into American society鈥檚 worship of a white male God; my spiritual imagination didn鈥檛 know how to venture beyond that. This is exactly where patriarchy wants us鈥攚ithout an adventurous spiritual imagination, without the audacity to ask boundary-pushing questions about God, and without a connection to our true, uncontrollable power.

In early 2017, I mustered all of the courage I could find and took one trembling step away from all I had known. I began searching for images of what I call the Sacred Black Feminine, a divine being who stands with and for Black women because She Herself is a Black woman. I didn鈥檛 have to search far. Just beyond the Protestantism of my origins and from the mystical depths of rogue Catholicism rose the Black Madonna, a Black female image of the divine who draws seekers of all religions and spiritualities.

Within seconds of viewing photos of Black Madonnas, my gut shifted from terror to hope. My soul immediately recognized that these photos and drawings declared a truth about my own sacredness and gave birth to a new understanding of God.

The Sacred Black Feminine is the God who is with and for Black women because She is a Black woman. She is the God who declares that Black women鈥攚ho exist below Black men and white women at the bottom of the white male God鈥檚 social pecking order鈥攏ot only matter but are sacred. And, in doing so, She declares that all living beings are sacred. She is the God who smashes the white patriarchy and empowers us all to join in Her liberating work. She is the God who has a special love for the most marginalized because She, too, has known marginalization.

She is the God in whom we can find hope.

The Black Madonna images depicting the fiercely kind Sacred Black Feminine showed me that my terror was not only valid but is echoed around the world across the racial, gender, religious, and class spectrums, and across time. Indeed, the Black Madonna is simply one manifestation of the interfaith Sacred Black Feminine. Within a matter of minutes, I went from a Black woman woefully unconscious of the Sacred Black Feminine to one deeply devoted to the Black Madonna and now connected to a global lineage of marginalized people who have found hope in Her. My devotion was not short-lived; over the following months, I devoured every book I could find on Her and the people who have loved Her.

I learned that there are over 450 Black Madonnas around the world, most of whom are over a thousand years old, with names as illustrious as 鈥淥ur Lady of the Good Death,鈥� 鈥淪lave Mama,鈥� and 鈥淒ear Dark One.鈥� My soul longed for more than book knowledge; I needed to come face-to-face with the Sacred Black Feminine. So, in the fall of 2018, I embarked on a 400-mile walking pilgrimage across the Auvergne, a mountainous region in central France that hosts over 40 ancient Black Madonna statues.

My desire to be transformed by the Sacred Black Feminine sent me walking over a mountain range in winter to visit 18 Black Madonnas. My desire to be transformed by the Sacred Black Feminine sent me deep into the dark forests of my trauma, so I could be healed. My desire to be transformed by the Sacred Black Feminine sent me away from the harmful spiritual communities of my origins so I could find true Love.

Edited excerpt from by Christena Cleveland, published with permission from HarperOne, an imprint of HarperCollins Publishers. Copyright 2022.

Traditionally the Passover Haggadah is a physical book with text that participants read from at the Seder table. There are various Haggadahs with differences in interpretations and stories. This year, when friends and families are physically separated, many will celebrate Passover with a virtual Seder and perhaps, their Haggadah on a Kindle or iPad. Despite isolation and electronics, those looking for the solace and inspiration of them to the Earth may turn to a new Haggadah by Rabbi Ellen Bernstein, 鈥淭he Promise of the Land: A Passover Haggadah.鈥�

In this excerpt from the introduction, Bernstein explains that her Haggadah grows from Judaism grounded in an understanding of the sanctity of our human relationship to nature. 鈥淭he Promise of the Land鈥� shares this profound spirituality with all readers鈥攊ncluding virtual guests at the Seder table.

Introduction in Four Questions

Why a new Haggadah for Passover? On Passover we celebrate the Jewish people鈥檚 journey from slavery to freedom and the coming of spring. We tell the story year after year. Yet, for every story about peoplehood, there is a backstory about land and the natural world. Our biblical holidays commemorate the harvest and the land, the very soil out of which Judaism grew. The Haggadah, the Jewish people鈥檚 origin story, is necessarily embedded in an earthy reality. Today, we are deeply aware that our well-being and our freedom depend on the Earth鈥檚 well-being. If the Earth and its systems are compromised, our freedom is compromised; life is compromised. This Haggadah seeks to enlarge our focus. It seeks to reveal the Seder鈥檚 ecological dimensions and awaken its quiescent environmental meaning.

How is this Haggadah different from other Haggadot? The Haggadah you have in your hands is traditional in some respects and modern in others. It follows the ancient instructions for Passover to read the entire passage that begins 鈥淢y father was a wandering Aramean,鈥� which recaps Judaism鈥檚 origin story. Curiously, the very first Haggadah, which was composed hundreds of years after the instructions for the Seder were written down, never actually cited the whole passage. The early rabbis dropped the last two verses, about land. Yet these deleted verses transmit a deep ecological message. This Haggadah retrieves these two verses, re-establishing them at the heart of the Seder, restoring the environmental significance of Judaism鈥檚 central story.

What is 鈥渢he promise of the land鈥�? 鈥淭he promise of the land鈥� refers to the primary blessing that God gives all the ancestors in the Bible: eretz, or land. That the Hebrew word eretz means not just 鈥渓and鈥� but also 鈥渆arth鈥� conveys a profound ecological sense. The land or earth is the home of the swimming creatures, the flying creatures, the walking, climbing, crawling, hopping, and sprinting creatures, and us. The land, the Earth, is our habitat, and we are its inhabitants. Land or earth is the most precious blessing a people can receive鈥攊t is the source of sustenance; it is the promise of life, the promise of freedom. Unfortunately, many people regard land as lifeless and inert鈥攔eal estate to be bought and sold or territory to be acquired and owned. And many Jews conflate 鈥渓and鈥� with the land of Israel only. If people view land this way, the whole subject of land invariably turns economic or political, and the deeper ecological meaning of land is lost. When we approach the Seder with a broader appreciation of land鈥攊ts spiritual, aesthetic, and ecological value鈥攖he Haggadah reveals its deep environmental meaning.

Who is this Haggadah for? This Haggadah is intended for those who are curious and want to dig deep. It understands the Passover story in universal and mythic terms. It is written for people with little or no background in Judaism as well as those with strong backgrounds鈥攂e they religious, spiritual, or secular. It aspires to reconnect participants to the beauty of the holiday and the world, while exploring essential questions about who we are and where we come from.

Two Elements of the Passover Seder 

Yachatz鈥擲plitting. Matzah is the central symbol of Passover; Passover is even called chag hamatzot, the holiday of matzah. Matzah is the simplest of all foods鈥攚heat and water, humble pie. It is parched, dry, and unassuming like the desert. When we consider matzah relative to bread, one of its meanings becomes clear. Bread is the puffed-up version of wheat, far removed from the flour and the earth from which it comes. In the context of Passover, bread symbolizes the additives and excesses that weigh us down and enslave us. Matzah reminds us of what bread would like us to forget.

Passover is the path back to basics鈥攖he earth, the wheat, and water鈥攁nd our essential selves. Passover teaches that freedom comes when we rid ourselves of the burden of too much. For now, we simply admire the matzah and reflect on it鈥攖he root food of our peoplehood.

The broken matzah is symbolic of our own brokenness and the brokenness of the world. Some of us have broken with the past鈥攚e may have lost a sense of history and a connection to our ancestors. Others may feel broken or detached from our earthy home. We may have lost touch with the natural world and all that it gives us freely each day.

The whole matzah represents wholeness and freedom鈥攊t is the food of liberation that the Israelites ate as they hurried out of Egypt. It helps us to retrieve lost parts of ourselves so we may become whole again.

Maggid鈥擳elling. The word Haggadah derives from the Hebrew word 濒鈥檋补驳驳颈诲, which means 鈥渢o tell.鈥� It is related to the word maggid, which means 鈥渟tory鈥� or 鈥渢elling.鈥� We tell the Passover story to remember who we are and where we came from.

On one hand, matzah represents our poverty; on the other, it signifies our freedom. The ancient rabbis said that a fundamental requirement for fulfilling the Passover obligation was to tell the story of moving from degradation to freedom, and that story is told right here in the matzah. The telling of our story begins with wide-open arms. The Seder bids us to invite those who are hungry to partake of our meal. It also bids us to invite those who are hungry in spirit鈥攍onely, lost, heartsick. We bring everybody into the circle, regardless of gender, sexuality, race, age, and religion. The freedom we aspire to depends on our sharing.

This edited excerpt from by Ellen Bernstein (Behrman House, 2020) appears by permission of the author.

There wasn鈥檛 a medical reason other than the fact that her labor had been long and didn鈥檛 seem to be progressing. She declined the procedure. But then Phillips felt the doctors鈥� and nurses鈥� attitudes toward her change.

鈥淚 felt like I was under a microscope and couldn鈥檛 really relax,鈥� Phillips said. She felt as though her experience 鈥渄idn鈥檛 matter鈥� to the doctors, who seemed to be set on performing a C-section 鈥渟o they could be done with it.鈥�

Phillips, who lives in Richmond, California, eventually gave birth to a healthy baby girl without a C-section. But her hospital experience was painful and traumatic, and, as a Black woman, she wonders if part of that was due to unconscious biases among the health care workers or to institutional racism embedded in the medical system. Doctors often , resulting in higher complications for their births, research has shown. Disregarding input from pregnant women increases the risk of death and complications for the mothers and their babies. C-section rates are also higher among Black women.

For her next three children, Phillips gave birth at home with midwife Laura Perez, who listened to her needs while also providing medical care. The use of alternative birthing methods, like home births and birthing centers, has risen over the past decade, especially among Black women, according to Bay Area doulas. Black women are 3 to 4 times more likely to die from childbirth than White women, according to the Centers for Disease Control and Prevention, partially because doctors often shrug off Black women鈥檚 concerns.

In 2020, 5,600 people in California gave birth outside a hospital, up from about 4,600 in 2019 and 3,500 in 2010, according to an  using California Department of Public Health data. Nationwide, births outside of hospitals rose from 1% in 2009 to 1.6% in 2019. Data from 2020 and 2021 and data by race are not yet available, according to the report.

Across California, midwives and doulas are working to increase access to their services to more Black and Brown women. Bay Area organizations, like NuBirth Midwifery and the Oakland Better Birth Foundation, are also raising awareness about the options people have to welcome a child into the world.

Some 鈥渨omen of color are unaware that there鈥檚 another way to be in your pregnancy, labor and birth, and postpartum than what鈥檚 generally done and prescribed,鈥� said Perez, who works in San Francisco. 鈥淵ou can鈥檛 have access to something if you don鈥檛 know it exists.鈥�

Perez has primarily worked with communities of color in the Bay Area. Her practice is rooted in traditional midwifery, which means she focuses on clients鈥� needs and their right to make their own decisions while also adhering to standard regulations as a licensed midwife in California.

鈥淧art of the answer, in terms of access and addressing things like maternal mortality and infant mortality and morbidity, has to do with having providers coming from our own community,鈥� said Perez, who has Native American and Peruvian ancestry.

To ensure her services are accessible to all who want them, she works on a sliding scale and offers bartering. Perez is also the mentorship program director at , a San Francisco-based network of community doulas that works to provide doulas free of charge to women who can鈥檛 afford one. A doula is a person who provides nonmedical guidance, information, emotional support, and comfort to a birthing or pregnant person.

According to Perez, women of color have been practicing midwifery for hundreds, if not thousands, of years. Before women started going to hospitals to give birth, and before giving birth became a medical intervention, a birthing person would be surrounded by family and friends as a child was being born.

The mythology that women are not safe to give birth at home has been rooted in racism, sexism and xenophobia. Midwives who served Black or Native American families or working-class immigrants were marginalized and even forced underground during the 20th century as states sought to restrict their practice and encourage women to give birth in hospitals, according to the .

Trained midwives were among the enslaved Africans brought on ships in the early 1600s. As chattel slavery boomed in the colonial United States, Black midwives were the primary source of care for both Black and White women and babies, according to researchers at . Black midwives were well-respected members of the communities they served. 

In the 1910s, at a time when most women gave birth at home, White physicians began attributing high infant and maternal mortality rates to the 鈥渦nsanitary鈥� practices of traditional midwives. In Northeastern states, midwives were displaced as White women considered hospital births the 鈥渕odern鈥� and 鈥渁dvanced鈥� form of delivery, according to . Traditional midwives, also known as 鈥済谤补苍苍测-尘颈诲飞颈惫别蝉,鈥� were slowly erased as health care reformists pushed for midwives to become licensed professionals.

By the 1970s, midwifery practiced outside of hospitals started making a comeback, and it has slowly increased in the decades since.

鈥淏irth at home with a midwife is a woman of color鈥檚 birthright,鈥� Perez said. 鈥淭hat鈥檚 why I do the work that I do.鈥�

The Oakland Better Birth Foundation was founded by Samsarah Morgan, a doula, community activist, mother, grandmother, and author. Morgan has worked as a doula for 42 years.

鈥淲e have been working on expanding our reach and ability for more folks to be able to have doula services and childbirth education in ways for people who would never have access to it,鈥� Morgan said. 鈥淎frican American families need to have informed consent in order to avoid the pitfall of over-medicalized births and unnecessary cesarean births.鈥�

The Oakland Better Birth Foundation also operates on a sliding scale, meaning mothers and students have the option to pay whatever they have in order to receive Morgan鈥檚 services. Morgan invites people from the community to attend classes and workshops on how the body works, opening access to education.

Morgan has seen firsthand the disparity in treatment among low- and high-income communities in the Bay Area, as her clients come from diverse socioeconomic backgrounds. 鈥淥ur mission is not to turn anyone away,鈥� Morgan said.

Zaree Persley, a 21-year-old mother living in Hayward, gave birth to her daughter in February. Persley was an eager and excited first-time mom, and she hoped to give birth without hospital staff navigating her delivery for her. 鈥淚 wanted freedom, mobility, and one-on-one care,鈥� she said.

But because nurses work in shifts, a woman could have as many as 5 to 7 nurses during her delivery, leaving less time for individualized care. Five months into her pregnancy, Persley started seeking out birth centers, where she could labor with a midwife. She gave up when a birth center in Castro Valley asked for $6,500 up-front, and another in San Mateo asked for a similar amount. Her only option was to stick with her health maintenance organization for care. 

Doulas and midwives are often not covered by medical insurance. The state鈥檚 low-income health program, Medi-Cal, will occasionally cover midwifery care or a portion of the costs of birthing centers. Midwifery fees often cost around $5,000 or more per pregnancy. Doulas will be fully covered by Medi-Cal insurance starting in January 2022, according to .

Doula services can sometimes be more affordable or free. Some city health departments, like Contra Costa Health Services, offer programs to people who want to be trained as a doula. Other hospitals, like San Francisco General Hospital and Dignity Health, have similar programs. After training, volunteers can offer services as a doula for a woman who can鈥檛 afford one.

On Sept. 29, 2021, lawmakers passed the Black Maternal Health Momnibus Act, a federal bill that addresses the higher maternal mortality rate among Black mothers. The bill aims to invest in factors that influence maternal health outcomes, like housing, transportation, and nutrition, , like more funding for organizations fighting health inequities and removing barriers to access.

At the first White House Maternal Health Day of Action on Dec. 7, 2021, Vice President Kamala Harris described the bill as 鈥渁 comprehensive bill designed to improve maternal nutrition, to expand affordable housing, and to extend our maternal health workforce to include more doulas and midwives.鈥�

The Momnibus bill would provide funding for doulas to work in hospitals under the supervision of hospital staff. The ultimate goal is to make doulas more accessible to women who would like to work with one but can鈥檛 afford one.

Some doulas, such as Morgan, oppose the bill, because they fear the supervision would impose unnecessary constraints and regulations that will hinder doulas and prevent them from advocating for the mother when it鈥檚 dire. Others, like Perez, applaud the efforts of the Momnibus bill but feel more still needs to be done to help Black mothers and their babies, because the problem of racism in health care is systemic.

鈥淚t鈥檚 like asking doulas to put a Band-Aid on something that is hemorrhaging,鈥� Perez said. 鈥淚t鈥檚 not enough.鈥�

This story was originally published by . It has been published here with permission.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life-supporting products and equipment. Families with healthy infants who had previously never experienced this level of stress over finding a product that should be readily available are now facing a situation that is sadly the status quo for families of children with disabilities.

This shortage鈥攑recipitated by a major recall of infant and pediatric formula produced by manufacturer Abbott Nutrition in February鈥攈as received major media attention, most of it focused on families who can鈥檛 find the over-the-counter Similac baby formula brand. Less attention has been given to the supply crisis in specialty prescription formulas like EleCare and hypoallergenic formulas like Alimentum (both also part of the Abbott recall). These specialized, medically necessary formulas are designed for children with gastrointestinal disabilities who can鈥檛 tolerate traditional formula. The shortage of these products affects not only babies, but also children and teens with complex digestive problems and allergies. This includes children fed through a jejunal tube (a feeding tube that bypasses the stomach and feeds the child directly in the small intestine); children with serious allergic conditions, like eosinophilic esophagitis or gastroenteritis; and children with intestinal malformations and malabsorption disorders.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life-supporting products and equipment.

Very few companies make these specialty formulas. The EleCare recall has led to shortages across all available brands. What鈥檚 the alternative for these kids? There really isn鈥檛 one. If children transition to a standard formula, they risk further damaging their already fragile digestive system, serious illness, or death. They can be admitted to the hospital for feeding through a central IV line, but this is a major, invasive intervention that dramatically increases children鈥檚 risk of infection and serious medical complications. On top of that, the nutritional products hospitals use for this procedure are also in short supply.

Because specialty formula is only available by prescription, there is no easy way for families to seek out an alternative supplier. If the local grocery store is out of regular baby formula, you can drive to another store. With prescription-only formulas, many families are required by insurance to use only one supplier. If that supplier can鈥檛 provide the product, parents and their kids are out of luck. Even if families could buy specialty formula without a prescription, the cost would be hundreds of dollars for just a few days鈥� supply.

Low-income families are disproportionately impacted. The Women, Infants, and Children program, the federal nutrition aid for low-income parents, issues coupons to families that need to purchase prescription hypoallergenic formulas such as Alimentum. These families are required to buy a specific brand and size of product, and any changes require a physician鈥檚 signature. California鈥攁nd now the federal government鈥攈as relaxed these requirements and now allows families in the WIC program to purchase different sizes and brands without a prescription, and for stores to exchange recalled formula these families already possess. However, this requires every clerk at every store in the state to have read and understood the latest policy memo. From what I鈥檓 hearing in my discussions with parents, many clerks have no idea the policy has changed. This means children may be going hungry or parents may be risking their children鈥檚 health by switching to over-the-counter formulas with ingredients that could cause them to have painful diarrhea, skin rashes, and difficulty breathing.

Families with limited financial resources face numerous other disadvantages in the search for formula: They鈥檙e less able to pay inflated prices for specialty formula, drive to multiple locations to check stock, and make online purchases. In desperation, some families are trying to stretch the formula they can find by diluting it with more water. This is dangerous. Infants can have seizures due to electrolyte and water imbalances from diluted formula, and they can become malnourished.

At this point in the supply crisis, finding formula is a zero-sum game. For every family that secures a scarce can of formula for their child, another child will go hungry. I participate in several online support groups for parents of children with disabilities, where parents will often help each other out by sharing supplies. But as the shortage grinds on and the posts from families desperate for specialty formula multiply, offers to help have essentially dried up.

Much of the media coverage has focused on what families should do to manage this problem as individuals. This is deeply flawed. The formula shortage is a result of systemic failure, and there are no individual solutions. Children with disabilities and medical complexities simply cannot survive in a country where the supply chain for critical, life-sustaining products like specialty formula isn鈥檛 stable. President Biden has done the right things in the short term鈥攁ctivating the Defense Production Act to speed production and streamlining WIC rules for alternate purchases.

But families of children with special health care needs are weathering this formula shortage at the same time that they are weathering shortages in other critical, life-sustaining equipment. America sprang into action to fix the formula shortage when it started impacting healthy infants. We need the same energy and policy response to resolve the shortage of specialty formulas and other supplies for children with disabilities.

This column was produced in partnership with .

Reports of a , used by millions of women in the U.S., have combined with general inflationary pressure on the price of goods to create cost and access barriers.

The Conversation asked Marni Sommer, an  at Columbia University, what was causing the current shortage and how it has affected the plight of low-income women and adolescent girls who may already face barriers to sufficient, high-quality menstrual products.

What is behind the tampon shortage?

There are a couple of things at play here. First off, it appears tampons are another casualty of the  that have been around since the beginning of the pandemic. But this has been compounded by a particular issue with the  used in tampons: cotton, rayon, and plastic.

On top of this, there has been the  on production worldwide, as well as at manufacturers in the U.S.

Meanwhile, the impact of inflation has hit menstrual products in general, and tampons in particular. Inflation trackers say the price of tampons has  over the last year.

Does the shortage impact some women more than others?

It is a good question. Unfortunately, no one has studied how the current shortage is affecting different women鈥攊t is just too soon. But we are hearing from organizations that help women who traditionally have difficulty accessing menstrual products, such as those experiencing homelessness and lower-income women, that it is directly affecting them.

These organizations are  a  of tampons, which makes it harder to distribute these products to vulnerable groups.

The shortage may affect women who use tampons more so than other menstrual products, such as pads or menstrual cups. And women who experience heavier bleeding will be hit harder by the rising costs, as they may need more tampons for each menstrual cycle.

Clearly, the most affected will be women who simply can鈥檛 afford the jump in prices. The shortage, alongside of the impact of inflation, will likely exacerbate what is called 鈥�.鈥�

What is period poverty, and who does it affect?

Period poverty is the inability to access sufficient, quality menstrual products. And even before the recent price increases, many women in the U.S. were affected by period poverty. Unfortunately, we don鈥檛 have rigorous data on the extent or scale of period poverty across the country.

But a  in 2021 with colleagues at the CUNY School of Public Health found that the pandemic exacerbated the problem of period poverty. Loss of income as a result of the economic fallout of the pandemic was a , especially for women already on low incomes or with lower formal education. Respondents to our survey indicated increased challenges when it came to accessing menstrual products.

What is the impact of period poverty on women鈥檚 lives?

There isn鈥檛 a lot of data on period poverty in this country鈥攚e have only really started talking about it in recent years. It isn鈥檛 a subject that, traditionally, women have  about.

Alongside the financial burden, there is importantly the ongoing stigma and  who are unable to access or afford menstrual products. Menstrual product insecurity can affect a woman鈥檚 confidence to go about her daily life and [can] create anxiety.

Another thing we found in our study looking at how the recent pandemic affected access to menstrual products was that women described using various coping mechanisms when not able to afford or access them. This included, for example, using diapers, socks, and cloth in place of menstrual products such as pads and tampons. This is happening now in America, but many women are embarrassed to talk about it.

Period poverty and the tampon shortage may also mean that women are having to use inferior products. Yes, you might be able to get cheaper tampons at the dollar store, but they might not work as well, and using lower-quality products might mean a woman has to buy even more of them.

This quality issue came up in a  I was involved with looking at populations experiencing homelessness. Respondents complained that the products available in shelters or at service providers, oftentimes the results of donations, were not of a high quality. Others have  similar product quality challenges for those who are incarcerated.

What are the alternatives for women amid the tampon shortage?

There are a number of other products on the market鈥攊ndeed, one thing I found out in a study of adolescent girls and menstruation was how overwhelmed they felt by the many options available to them.

Our understanding is that many more women use pads than tampons. Then, you have , which have been around for decades but have seen a resurgence in recent years. They are environmentally friendly, but not every woman is comfortable with the idea of inserting cups, and the upfront costs can be higher.

 made of absorbent materials is a newer product that some women use. But for women who are used to tampons but are finding them difficult to access, pads may be the easiest substitute.

This article was originally published by . It has been published here with permission.

Sitting on a cold, unwelcoming table, I looked around the room trying to find comfort in the mundane, uninspiring office. I was surrounded by blinding white walls and freezing under a thin hospital gown in what felt like a 30-degree room.

I knew at my age not getting my period regularly was unusual. But before my internal fears overtook me, my gynecologist walked in and nonchalantly confirmed what I had already semi-suspected: I had PCOS. Still, in disbelief, I half-listened as I was told to just go on birth control, to try to maintain a healthy weight, and to come back when I decided to get pregnant. If my doctor鈥檚 flippant behavior was any indication, a hormonal disorder that can lead to was just not that big of a deal.

Six years after that initial doctor visit and much self-research, I came to learn more about my body from strangers on the internet than from any of my doctors. After years of struggling with my weight and hyper-fixating on what I ate, I can finally manage my PCOS in a healthy and sustainable way thanks to an unlikely ally: TikTok. I found my confidence again after discovering a community of women who, like me, were ignored or dismissed by their doctors and decided to do something about it.

went on TikTok after posting a video about , a condition in women that causes the growth of excess facial hair. A year after posting the video, Fischer has become a prominent voice on the app helping women manage their PCOS.

鈥淭he response was really amazing to me. 鈥� It was really cool, because I started to build relationships with people; they would ask me questions and then I could respond. 鈥� TikTok can be a very mean place, but I always come back to the fact that that鈥檚 the space where I can reach the most people,鈥� Fischer says. While Fischer admitted that she is a shy person and was hesitant to start a TikTok account, she quickly realized how many people needed to hear what she was sharing.

Today, I am at peace with my diagnosis because I鈥檝e found a community with which to share my struggle.

Similar to Fischer, also experienced the same reaction after sharing her journey of trying to manage her PCOS. 鈥淚鈥檓 super grateful, and I love that I have the platform and I鈥檓 able to help people,鈥� Brie says.

For Brie, it took a couple of visits to the doctor鈥檚 office to actually be diagnosed with PCOS. 鈥淲hen I did get diagnosed in 2017, that doctor was receptive to what I was going through, and he actually did tests, but at the same time, I feel like doctors don鈥檛 do enough to actually do the research to learn about [PCOS],鈥� Brie says.

For many women, PCOS is , and when it is diagnosed, doctors often emphasize weight loss to combat the disease even though weight is a common symptom.

鈥淚 was slowly gaining weight, even though I was extremely active and I was working out all the time,鈥� Brie says.

Brie鈥檚 sentiment is unfortunately the reality for many women diagnosed with PCOS, including myself. In my case, I worked out feverishly, but my symptoms never abated. It truly wasn鈥檛 until I watched videos posted by Fischer and Brie that I realized my fixation on weight was misguided. 

Besides maintaining a healthy weight, trying to conceive can also be a struggle for people with PCOS. PCOS is one of the of infertility鈥攂ut it鈥檚 often treated like it鈥檚 only an infertility issue. When I was first diagnosed, it felt like PCOS would only affect me if or when I tried to get pregnant. 鈥淧COS is a lifelong issue. It affects you throughout your entire life cycle, and it affects you whether you decide that you want to have children or not,鈥� Fischer says. 

In Fischer鈥檚 case, major complications arose after she decided to get pregnant. She was diagnosed with endometrial cancer in her mid-20s and had to use IVF to conceive a child, something she wished her doctor had warned her about before trying to get pregnant.

鈥淚 do feel like health care is very patronizing. 鈥� When I was pregnant, the amount of times that I had to stand up for myself in a very uncomfortable way as a shy person was really frustrating,鈥� Fischer says.

Now, women with PCOS might not even have access to the treatments they need to get pregnant. With the Supreme Court Roe v. Wade, access to fertility treatments like is under threat. Because the ruling used the term 鈥�,鈥� state legislatures could decide that frozen embryos are human life, making IVF illegal.

Despite the Supreme Court鈥檚 failings, Brie and Fischer have managed to form not only a community for people with PCOS but also, more importantly, a safe space for people to share their own insecurities about their diagnosis.

But why did Brie, Fischer, myself, and many others all have such demoralizing experiences with our doctors? As it turns out, it might come down to the name. 

One of the only signs doctors look for when diagnosing PCOS is cysts in the ovaries. 鈥淚t鈥檚 a misnomer. 鈥� You don鈥檛 need 鈥榩olycystic ovaries鈥� to make the diagnosis to begin with,鈥� says Mary Jacobson, an OBGYN and Chief Medical Officer at Alpha Medical.

Jacobson further explains that because it takes time for people鈥檚 bodies to develop, it鈥檚 hard to diagnose PCOS in adolescents. 鈥淥n average, it takes people about seven years to get diagnosed with PCOS, because it鈥檚 basically a diagnosis of exclusion,鈥� Jacobson says. In fact, in a focusing on women鈥檚 experiences being diagnosed with PCOS, 鈥淢any women reported delayed diagnosis and inadequate information.鈥�

This doesn鈥檛 explain the dismissive treatment people with PCOS often receive from their doctors鈥攅specially if they are overweight.

鈥淯nfortunately, there鈥檚 a lot of stigma and implicit bias that clinicians put on people who are overweight,鈥� Jacobson says. Education is key, and specialists should not be the only doctors diagnosing PCOS. 鈥淧rimary care providers should have a foundation of PCOS since it鈥檚 so common. 鈥� Fifty percent of the counties in the United States don鈥檛 even have an OBGYN,鈥� Jacobson says.

It won鈥檛 be until PCOS becomes a mainstream issue that people will get the care they truly deserve. This is why nonprofit organizations beyond TikTok are so vital.

Ten years ago, Megan Stewart founded the . After experiencing PCOS symptoms as early as 9 years old, Stewart would not be diagnosed by an OBGYN until she was 16. 

鈥淭here is a reason why they call it practicing medicine; they鈥檙e doing just that, they鈥檙e practicing, they don鈥檛 have the answers. 鈥� But that鈥檚 not a full-on excuse, because where they鈥檙e lacking is the patient care,鈥� Stewart says.

Stewart鈥檚 own struggle opened her eyes to the unfortunate reality many women with PCOS face. It鈥檚 why Stewart鈥檚 nonprofit focuses on four pillars: support, resources, information, and research.

Stewart鈥檚 overriding message for women struggling with PCOS is for them to know that they are not alone. 鈥淒o your own research, be your own advocate. 鈥� If you feel it in your heart and your soul that you鈥檙e not hearing what you need to hear from your medical professional, you have every right to take your money elsewhere and hear from a medical professional that can help you,鈥� Stewart said.

After I walked out of that gynecologist鈥檚 office six years ago, I had more questions than answers. Today, I am at peace with my diagnosis because I鈥檝e found a community with which to share my struggle. In the future, I hope patients like me will receive the responsible care they deserve when first diagnosed. Until then, we have TikTok.

Dining indoors these days certainly isn鈥檛 news. But within minutes, Pandora鈥檚 box had been flung open鈥攗nleashing an online tsunami of calumny directed entirely at Gonsalves. It was a moral condemnation of his life, his decency, his very self, based on this single public act. Mike Hicks, one of Gonsalves鈥� online critics, this way: 鈥淒oes it make sense to engage in low-risk behaviors for 90 or even 95 percent of the time so you feel justified sticking a revolver to your head and pulling the trigger in a game of COVID Russian roulette?鈥�

The reaction reveals a level of moral outrage increasingly entering debates over public health. For Gonsalves, it is concerning. 鈥淎fter three years of a pandemic, we have to think about what鈥檚 sustainable,鈥� he responds. Expecting responsible behavior from others is reasonable, but asking for totally, completely flawless behavior 100% of the time is not. 鈥淎n absolutist moral framework pits us against each other and takes the public out of public health.鈥�

We are now in the 鈥溾€� phase of COVID-19, but that may be nothing new. Medical anthropologist Martha Lincoln of San Francisco State University notes that America has a long tradition of framing individuals as the most influential actors in their own lives, and this lets regulators off the hook. 鈥淲e are reduced to looking to individuals as the major cause of and culprit for the outcomes that we鈥檙e living with,鈥� she explains. 鈥淒iverting responsibility from institutions such as the CDC or the White House means that we can鈥檛 really locate a common enemy, and so enemies appear to be potentially everywhere. People may experience catharsis from identifying those who seem to be straying from the behaviors we think are correct. But it鈥檚 counterproductive.鈥�

Instead of focusing on individuals, adds Gonsalves, 鈥渕ore lives can be saved when we shift the environmental and structural factors of society that throw us into the path of risk. The entire debate about individual interventions deals with downstream effects. Yes, individual interventions save lives, but they leave the larger sources of sickness unaddressed. It鈥檚 a ruse.鈥� An analogy he likes to use is this: If you鈥檙e standing on the shore of a river watching hordes of people flailing as they drown in a fast current, you can either jump in and save one, or go upstream where you find the bridge has collapsed and needs to be repaired.

In America today, most of us are standing on that metaphorical shore, trying to decide whom to save from or blame for infection, climate change, staggering health care costs鈥攐ne, two, ourselves, everybody, nobody? Moral frameworks about health can slide into our lives almost unnoticed and ignite self-righteous outrage as well as deeply felt betrayal, grief, or contempt. The result is more than toxic in today鈥檚 world, when so many engage in what molecular biophysicist Joseph Osmundson calls 鈥渢hese online clusterfucks of shaming, which never work anyway. Morality is so baked into our language of illness, it is almost the default setting, the language given to us to think about sickness,鈥� he says. 鈥淚t takes active, thoughtful work every day with every sentence one uses to reframe illness in ways that don鈥檛 make it a moral state.鈥�

Mismoralization is exactly what it sounds like鈥攖he misapplication of the moral impulse in places where it does not belong and cannot help.

A powerful sense of right and wrong, of justice and injustice, forms early in life. Research has shown that are capable of judging what is fair and unfair. We may acquire an internal in lockstep with the acquisition of actual language. But when moral frameworks spill into the realm of public health, we end up with what bioethicist Euzebiusz Jamrozik and his collaborator Steven Kraaijeveld have dubbed mismoralization.

Mismoralization is exactly what it sounds like鈥攖he misapplication of the moral impulse in places where it does not belong and cannot help. Mismoralization in public health can lead to shaming, blaming, and, ultimately, the fracturing of society. 鈥淎cross societies,鈥� write Kraaijeveld and Jamrozik in Medicine, Health Care and Philosophy, 鈥渉uman beings are inclined to punish norm violations.鈥�

鈥淲e as a culture don鈥檛 think about how policy makes people sick,鈥� says medical historian Jim Downs, author of the book Maladies of Empire: How Colonialism, Slavery, and War Transformed Medicine. 鈥淲e鈥檙e much more willing to ask, 鈥榃hat did you do to become sick?鈥� As soon as you hear someone has lung cancer, the first question is, 鈥楧o you smoke?鈥� That鈥檚 a moral question.鈥�

At its worst, mismoralization leads to criminal sentences. Thirty-five U.S. states still have laws that , even though AIDS is now a disease. In some states, the maximum jail sentence is still life in prison.

On the other side of the coin, getting infected with HIV has also been moralized. 鈥淚 cannot count the times I鈥檝e been told I brought HIV on myself because I couldn鈥檛 keep it in my pants,鈥� says Gonsalves. 鈥淚 deserved what I got.鈥� Even now, he says, he occasionally gets emails and direct messages calling him things like 鈥�.鈥�

During the 1980s and 1990s, when HIV infection and mortality rose and peaked, there was a kind of moral calculus that went like this, says Osmundson: 鈥淒id you get it from a monogamous partner who cheated? Well, that鈥檚 bad but not that bad. Did you get it at a sex party? Oh my God, you should be ashamed.鈥�

If you didn鈥檛 wear a condom back then, you were seen as killing yourself and others, adds Liz Highleyman, a medical journalist specializing in HIV and other infectious diseases.

Last summer, when monkeypox swept largely through gay communities鈥攎ost often transmitted, it appeared, during the physical intimacy of sex between men鈥攐ld stigmas resurfaced. One epidemiologist who caught monkeypox told that he was afraid people would think, 鈥泪蹿 you got monkeypox, you got it in a very slutty way.鈥� Public health officials applied harm-reduction principles that had proved effective in the fight against HIV, says Highleyman, but the public response was not so forgiving. As put it: 鈥淪o Big Brother shut down your churches and businesses for Cov19, but won鈥檛 tell gay men to stop having orgies for monkeypox.鈥�

We have a long tradition in this country of shifting blame to those who don鈥檛 deserve it.

When confronting illness or frailty, this tradition of moral outrage does not recognize the systemic failures that are the true drivers of illness. 鈥淯nited States history has often featured the criminalization of infection,鈥� observes medical ethicist Harriet Washington, author of the book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present, which won the 2007 National Book Critics Circle Award for Nonfiction. Pellagra, for instance, was called a Black infectious disease that struck 鈥淎frican Americans because of their supposed penchant for living in filthy conditions.鈥� It was actually a disease of malnutrition that largely afflicted the enslaved. It wasn鈥檛 until the 1920s that physician Joseph Goldberger discovered that the illness stemmed from nutritionally inadequate corn-based diets. Later researchers learned that the disease is due to a .

When the higher SARS-CoV-2 infection and death rate of African Americans was first documented, many causal theories tended to blame the victim, says Washington. She explains that asked whether higher drug or alcohol use, disparate genetics, or failure to don masks and shun crowds heightens Black Americans鈥� risks. Others, she says, invoked Blacks鈥� high obesity rate, although obesity is an American problem, not a racial one. 鈥淚n any event,鈥� says Washington, 鈥渙besity in African Americans is tied to living in 鈥榝ood swamps鈥� where a dearth of affordable nutritious fare is worsened by saturation of tobacco and alcohol products whose marketing is targeted to racial groups.鈥�

Tuberculosis, a scourge caused by Mycobacterium tuberculosis, surged in in Europe and North America during the 18th and 19th centuries. Once it was understood to be an infectious disease, the sickness was moralized. Women and the poor were targeted鈥攖he former for apparent failures in keeping their houses clean, thus allowing tuberculosis to spread; the latter for living in squalid conditions that favored transmission and threatened the rest of society.

Early in the COVID-19 pandemic, 100 Asian Americans were being attacked in this country every day, according to Washington. 鈥淧eople initially shun, exile, and then want to kill others who may be perceived as carrying dangerous infections.鈥� Washington says this is an example of based on the fact that we are indeed more vulnerable to novel pathogens.

The principle is correct, but the application is often misguided. In the late 1800s, for instance, coastal West Africa was called 鈥渨hite man鈥檚 grave鈥� because European soldiers and missionaries, exposed to infections to which they had no established immunity, died in high numbers there. Similarly, Native Americans succumbed to the strain of syphilis brought to the New World by European settlers. But where outbreaks of infection are concerned, 鈥渕ajority groups wrongly demonize minority groups,鈥� Washington says, 鈥渁voiding them and then expelling them.鈥�

We have a long tradition in this country of shifting blame to those who don鈥檛 deserve it. As anthropologist Lincoln points out, in almost every domain in American life where public health is at stake, large industries reflexively move their own responsibility out of view. For instance, nearly 60 years ago, a young lawyer named Ralph Nader wrote Unsafe at Any Speed: The Designed-In Dangers of the American Automobile, proving that but also by the auto industry鈥檚 unwillingness to spend on safety features, like anti-lock brakes and airbags. During their long legal battle with the Department of Justice over the opioid epidemic traced to its drug, oxycontin, Purdue Pharma and its owners, the Sackler family, shifted blame onto the individuals who became unwitting addicts. 鈥淎busers aren鈥檛 victims; they are the victimizers,鈥� Richard Sackler stated in one . And the fossil fuel industry has long popularized the concept of an individual鈥檚 鈥渃arbon footprint鈥� as a way to shift attention away from its own excesses鈥攚hile individuals are left homeless from the wildfires, hurricanes, and vicious storm surges that are now commonplace effects of a changing climate.

These days, it is the individual who is of our current pandemic. That may be the case, but it does not constitute the basis of a valid public health response. It鈥檚 a form of manufactured futility that can be self-fulfilling. 鈥淎 tired public is not an argument for public health policy,鈥� says Lincoln. 鈥淪o I understand why individuals are blaming other individuals. We all feel we鈥檙e trying to resolve a national public health crisis ourselves at home or online.鈥�

What can we do to cope? First, recognize that 鈥渉umans are gloriously messy,鈥� says Osmundson. 鈥淲e make mistakes, and there is no moral failing to wanting to have dinner with friends, eat pie when we鈥檙e on a diet, or have sex once without a condom. We have to build systems that are robust enough that these deeply human behaviors don鈥檛 lead to bad outcomes.鈥�

If you lower your mask to take sips and bites at a wedding, should you be willing to go to jail for manslaughter, as queried in ? If you insist that everybody wear a mask, are you robbing to 鈥渞ichly connect, to fall in love, to live a full life鈥�? Or are we shadowboxing to fill the vacuum left by the public health agencies that guide our national decisions鈥攖he CDC, the FDA, and the White House that presides over them both? 鈥淚t鈥檚 not rocket science, what people need at a population level,鈥� says Osmundson. 鈥淲e need free health care, paid sick leave, an infrastructure that tackles public health head-on, and policy that reflects the fact that we function as a global superorganism.鈥�

While we are nowhere close to that nirvana, we can stop hurling the slings and arrows of moral outrage at one another and join hands to demand more of our institutions, now and in the future. In that sense, we do have a moral obligation, for we are, as Gonsalves often says, 鈥渙ur brothers鈥� and sisters鈥� keepers. Even in our human imperfection, that鈥檚 all we鈥檝e got.鈥�

Resources for Readers

Here are some tips to dismantle your moral outrage, grief, sense of betrayal, or overwhelming fatigue in the face of public health failures:

• As simple as it sounds, care for yourself and those closest to you. Pay attention to what is important in the long term, rather than urgent and pressing right now. Smart, sane life decisions are made after thoughtful reflection. Urgency is fueled by heated emotions and desires that rule the moment but will pass. Only you know how much social engagement you or your children need to avoid falling into depression, how vulnerable you or family members are to infection, and whether living in an area at high risk of weather and climate disasters is offset by job opportunities, close-knit community, or natural beauty. Once you鈥檝e found your own pragmatic and personal comfort zone, stick with it.
• Don鈥檛 grieve alone. Around the country, for instance, citizens are organizing and making demands of local leaders to memorialize family members they have lost in the pandemic. The Los Angeles County Board of Supervisors is  for ideas to create a memorial for the more than 33,000 residents of the county who have died since the pandemic began. In May, The Boston Globe asked artists to submit their visions for memorials; ideas ranged from lit 鈥渁ltars of remembrance鈥� to a bronze 鈥渃oronaflower鈥� that looks like a sunflower with missing petals. In Portland, Oregon, citizens gathered to  lost to a deadly heat wave. A list of memorials nationwide for various losses can be found .
• Ally yourself with groups that have common goals. For instance, labor movements and unions have a long tradition of regulating workplace safety and can help with shared goals for those concerned about, for instance, going back to teaching in classrooms where no masks are required or where smoke from wildfires is choking the air.
• Recognize that global health is local health, and make your voice and vote matter by electing leaders who understand this. For instance, the monkeypox outbreak that reached our shores last spring began in Nigeria in 2017. Nigerian physician Dimie Ogoina realized back then that the way the virus was being transmitted had shifted, favoring sexual intimacy, and . The world wasn鈥檛 interested. Inevitably, by May 2022, the virus was spreading in 78 countries.
• Reframe how you view viruses and your vulnerability to them. Molecular biophysicist Joseph Osmundson, the author of Virology: Essays for the Living, the Dead, and the Small Things in Between, suggests we take the opportunity to resculpt the way we see viruses. This will allow us to lower our metaphorical burden and opt out of shame for getting sick. 鈥淭here are more viruses on earth than there are stars in the sky,鈥� he says. 鈥淎nd viruses do have a keen 鈥榠ntelligence,鈥� in that evolution acts so profoundly and rapidly on viruses, they are in a sense imbued with the intelligence of evolution. A virus, a small packet of information, can have an enormous and profound effect on a body, a culture, and nation-states.鈥� They have done so as long as there has been life on earth. When you see yourself and viruses as embedded in evolution, you relieve yourself of blame and shame. Yes, you鈥檒l do your best to avoid them when you can; but no, you are not defective or bad because you caught a virus.
• Forgive yourself and others for making mistakes. It is impossible not to make mistakes. In her book Being Wrong: Adventures in the Margin of Error, Kathryn Schulz, a staff writer at The New Yorker, urges us to step outside the 鈥渢iny, terrifying space of rightness鈥� and be willing to be wrong. Error, she contends, is fundamental to being human.

This story , a digital magazine tackling science controversies and deceptions, and is republished here with permission.

Mufti Mohammad Farhan juggles numerous responsibilities at the  in New York. On a Friday afternoon, he finishes leading prayers and departs for a funeral at the mosque. Since the pandemic, however, he has taken on a new role: identifying those in the Muslim community who need mental health support and referring them to clinical experts and therapists. 

Across the United States, Muslim attitudes toward mental illness are changing, as is the role of the mosque. Following the COVID-19 pandemic, Muslims have been more willing to engage in public conversations regarding mental health issues, including the taboo subject of suicide. Imams and religious leaders have responded to worsening mental health problems in a variety of ways, including by taking mental health training. Although limited, such training can be a first step toward imams becoming a crucial part of the solution to their community鈥檚 mental health needs. 

鈥淲e are often the first responders to mental health crises, because there is a trust factor that was built over time, and because of the huge stigma within our community,鈥� explains Mufti Farhan, a soft-spoken religious leader who grew up in New York.

From a distance, the Islamic Center of Long Island on Brush Hollow Road appears more like a large complex of well-funded administrative offices and classrooms than a space for prayer. It is the oldest mosque on Long Island, accommodating up to 500 people, as well as shelter houses and a community pantry for those in need.

Farhan notes that since COVID-19, he has seen an uptick in stories of domestic violence and familial disputes whose most common theme is that the children of immigrants often express feelings of isolation and misunderstanding because of their bicultural identity.

Before and After the Pandemic: Mental Health in American Muslim Communities

鈥淢any immigrant families think a mental health challenge can make their kids less suitable for marriage and acceptance, so they hide it or pretend it doesn鈥檛 exist,鈥� explains Sayed Bhutan, a trainer with the Heal Collective.

According to the , global rates of anxiety and depression increased by 25% during the first year of the pandemic. In fact, in the United States, the percentage of adults who received treatment for their mental health over the preceding 12 months rose from 19.2% in 2019 to 20.3% in 2020 and 21.6% in 2021, according to . White people were the most likely to receive mental health treatment; more than 30% of whites reported receiving mental health treatment in 2021, compared with 15% of Blacks, 13% of Hispanics, and 11% of Asians. As many foreign-born Muslims in the U.S. are Asian, and many U.S.-born Muslims are Black or Hispanic, the data suggests that Muslims receive lower levels of mental health treatment than their non-Muslim peers.

鈥淐OVID-19 opened the closed doors for Muslim Americans to speak out about their own mental health,鈥� says Iman Farajallah, a psychologist who works with Muslim Arab-speaking clients struggling with addiction, domestic violence, and substance abuse in California. Despite a change in attitudes toward seeking help, high rates of poverty and unemployment in immigrant communities often make mental health treatment unaffordable. Other barriers include finding a therapist who understands immigrants鈥� religious or cultural backgrounds or the languages they speak. 

When Farajallah surveyed 1,317 Muslim immigrants across the United States, almost half cited Arabic and Urdu as their primary spoken languages. 鈥淯nfortunately, there is a limited number of therapists able to communicate in different languages and understand the specific cultural and religious background of Muslim Arabic- or Urdu-speaking communities,鈥� Farajallah explains.

Sarah Murad, a counselor at the 鈥檚 humanitarian arm, has been providing culturally competent care to immigrant communities in Illinois, a state with the highest per-capita population of American Muslims in the U.S., many of whom are religious conservatives or recent immigrants. 鈥淏y the time people come to seek our help, it is already too late because of the stigma [around mental health], so the first thing they ask for is a religious counselor,鈥� Murad says. In such instances, she refers cases to Shaykh Omer Haqqani, who works at the  and provides culturally relevant therapy and khutbahs, or sermons, about mental health across Illinois. 

鈥淥ur faith tells us that it鈥檚 OK to be sad and express our emotions,鈥� says Haqqani. He often cites the following story to those who seek his help: 鈥淲hen our prophet Muhammad (PBUH) lost his infant child鈥攈e was weeping, he was mourning, he was crying to the point where the companions came and asked him, 鈥楨ven you, the prophet of God?鈥欌€� 

The causes of mental health issues among Muslim Americans have been linked to increased . Psychology professor Amy Weisman de Mamani of the  at the University of Miami uses research to raise awareness about the unique psychological needs of Muslim American communities. She says Islamophobia as well as bias in therapy and society can make Muslim Americans vulnerable to what psychologists call 鈥渢hwarted belongingness鈥� and 鈥減erceived burdensomeness,鈥� two risk factors for depression and suicide behavior.

鈥淏ecause there is much Islamophobia and fear since 9/11, if somebody is distressed, they would be less likely to want to go and talk to a therapist. Even if they鈥檙e not worried about being reported, they鈥檙e worried about how they鈥檙e going to be perceived,鈥� Weisman explains.

For religious leaders, like Haqqani in Illinois and Farhan on Long Island, the shift toward seeking mental health care is happening at Islamic centers and mosques. Both men cite an expansion of the role Islamic centers play in the lives of community members. 鈥淔or Muslims, one of the most important and effective venues to get information about mental health is at the mosque, and topics such as suicide and depression are now openly being addressed in khutbahs,鈥� Haqqani shares.

How One Specific Study Triggered Backlash鈥擜nd a Push for Action

In April 2021, a  in the Journal of the American Medical Association (JAMA)showed that nearly 8% of Muslim adults reported a suicide attempt in their lifetime鈥攃ompared with 6% of Catholics, 5% of Protestants, and 3.6% of Jewish respondents. This pre-pandemic study sparked a backlash within traditional religious circles, with one scholar  that the study was inaccurate. Daniel Haqiqatjou, an anti-feminist conservative Islamic commentator,  that the research is 鈥渦nethical鈥� and part of a campaign to push 鈥渓iberal policies鈥� and cast a negative light on American Muslims and Islam. 

Despite this backlash, the authors stand by their findings. 鈥淲hat we have seen clinically and anecdotally is now proven,鈥� says Rania Awaad, a director of the  at Stanford University and one of the study鈥檚 authors. She adds, 鈥淭here is an increase in suicide attempts in Muslim American communities, [to] which especially our imams used to say, 鈥楴o, no, no, this is not an issue.鈥欌€�

Awaad recalls a specific incident in Texas that became a turning point for religious leaders seeking help in addressing mental health needs. In April 2021,  people were fatally shot in a suburban Dallas home after two Muslim brothers with a history of mental illness made a pact to kill their family members and die by suicide. Within 24 hours, Awaad was leading an emergency training via Zoom with a group of imams in Dallas who had turned to her for help.

From this experience, Awaad noticed how religious leaders tend to ask for intervention only after a crisis has occurred, and together with her team at Stanford University, she. 

Amara Kamara, a 53-year-old first-generation immigrant from Liberia, attended Awaad鈥檚 training in his capacity as a mental health advocate and administrator at Masjid Al-Ansar in Minnesota. He saw it as a 鈥渘ew experience鈥� that allows him to 鈥渟ee how we can use community resources to have an open discussion about a difficult topic and tell the victims that it is OK to talk about it.鈥�

The Future of Muslim American Mental Health

Muslim Americans are racially diverse, and . Amelia Noor-Oshio is the first self-identifying Muslim American to receive federal funding from the National Institutes of Health to conduct grassroots mental health research within this community. For her, structural oppression and Islamophobia are at the heart of stigmas against mental health care, on par with social and political pressures. She finds, 鈥淢uslim mental health is about social equity, accessibility, and the reality of living a minoritized experience and with [a] stigmatized identity where you don鈥檛 have as much power and protection as someone who is white, straight, able, neurotypical, and heterosexual.鈥� 

Beyond structural issues, there are other community-specific barriers to mental health facing the Muslim community. Two Muslim social workers who did not want to be identified share that they recently worked with eight clients who had suicidal thoughts. Those clients had easy access to handguns, and their gender identity was changing in ways that their parents did not accept.

鈥淚t鈥檚 gun access, social and political divisions, mass shootings becoming normal, then the stigma,鈥� one of them explains. 鈥淪o, if you live in an isolated suburb, have no mosque or Islamic center that welcomes you as you are, the risk factors will be more substantial and enduring.鈥�

Salman Shaheen Ahmad, co-founder of the听听at Miami University, provides culturally informed, spiritually integrated mental health care to Muslims in Florida. Looking to the future of mental health access, he sees the Muslim community as increasingly open to recognizing new and old mental health problems, saying, 鈥淲e have more collaboration and conversations between mental health professionals and religious leaders than 10 or 15 years ago.鈥澨�

To back up his optimism, he explains, 鈥淲e have more community centers and more open spaces. We have more people who are doing scientific research and culturally-informed therapy, and who care about combining 鈥� the two.鈥�

CORRECTION: This story was updated at 02:17 p.m. PT on Jan. 9, 2023 to note the full name of Muslim American Project co-founder Salman Shaheen Ahmad.听Read our corrections policy.

The racial and sexual  is what spurred the World Health Organization to  in November 2022. While this is a step in the right direction, I believe more work needs to be done to reduce the stigma surrounding infectious diseases like mpox.

I am an  who studies HIV, COVID-19, and mpox. During the COVID-19 pandemic, I was the lead investigator at the University of Pittsburgh for a  looking at how COVID-19 has affected different communities. Effective public health communication isn鈥檛 easy when conflicting messages may come from many sources, including family and friends, other community members, or the internet. But there are ways public health officials can make their own messaging more inclusive while mitigating stigma.

Creating an Inclusive Message

Inclusive public health messaging can motivate the public to make better decisions regarding their personal health and the health of others. This effort often involves engaging the communities most affected by an outbreak. Unfortunately, because these communities are heavily affected by the infection and tend to , they are often blamed by society for spreading the disease.

COVID-19 drove an increase in hate crimes related to the pandemic against  in the United States. A  found that 8% of Asian American and Pacific Islander adults in California experienced a COVID-related hate incident.

Effective public health messaging can focus on the fact that while infections may first affect certain groups of people, they often  and eventually encompass entire communities. Infections are caused by bacteria, viruses, and fungi. They don鈥檛 discriminate by race, gender, or sexual orientation. Messages that focus on the pathogens, rather than the communities, may reduce stigma.

 are also likely to engage a greater portion of the community. Examples include making sure the people represented in posters and flyers, in images on TV and websites, and in other informational materials are from diverse backgrounds. This sends a more unified message that what affects an individual also affects the larger community.

Avoiding Blame and Fear

Many media outlets, especially on social media, use  to report on infectious diseases. While this may reinforce certain protective behaviors, such as using condoms during sex, it may also increase stress and anxiety. Fear-based messages also , leading to increased discrimination against communities that are already vulnerable and mistrustful of health care. Ultimately, this leads people to avoid seeking health care and can worsen health outcomes.

Public health officials have often used fear-based messaging in response to sexually transmitted infections, or STIs, like , , and . Sex itself is  by society. I have found that some of my patients would prefer to avoid getting tested and treated for an STI rather than deal with the .

Making sexual health and STI testing  parts of overall wellness and health is an important step to reduce the stigma around them. Similarly, messaging that normalizes the challenges faced by people at risk for certain infections could help avoid causing shame.

Tailoring the Message

Infections affect different people differently.  might be a mildly stuffy nose for one person, and it could be months in an intensive care unit hooked up to a ventilator for another. Messages that  of medical and public health interventions that resonate with communities are most likely to be successful.

Different groups have different exposure risks as well. Mpox heavily affected gay and bisexual men in 2022. One reason was related to how the virus is transmitted.  suggested mpox was largely transmitted by close skin-to-skin contact, but  raised the question of whether the 2022 outbreaks were being driven more by sexual transmission.

There was  as to whether public health messaging should highlight sexual encounters as a potential transmission route. This can risk further stigmatizing gay and bisexual men versus potentially overlooking these key at-risk populations.  that promoting the message that mpox was primarily transmitted by close contact would prevent resources and interventions from reaching the groups of people most affected by the disease.

One size does not always fit all when it comes to public health messaging. Multiple messages may be necessary for different groups of people based on their risk of infection or severe disease. An August 2022 Centers for Disease Control and Prevention survey found that  reduced their sexual encounters in response to the mpox outbreak. Since late summer,  rapidly, and many experts think that both behavior change and vaccination may have contributed to the falling rates. Studies like these further support the importance of directly engaging with communities to encourage healthy behavior change.

Trusted Messengers

Mistrust is also a barrier to effective messaging. Some communities may be mistrustful of medical and health care systems because of prior histories of exploitation鈥攕uch as the , where researchers prevented Black participants from receiving syphilis treatment for decades in the mid-20th century鈥攁nd ongoing fear of mistreatment.

Identifying trusted community champions and health care providers鈥攅specially ones who belong to that community鈥攖o deliver a public health message may increase its acceptance. One , for example, found that Black men were more likely to accept vaccines and medical advice and engage in health care services if they had a Black health care provider.

Effectively delivering public health messaging is a complicated and challenging process. But talking to and listening to the communities most affected by an outbreak can make a difference.

This article was originally published by . It has been republished here with permission.

Patients will no longer be surprised to receive a bill as part of their treatment when they head to the emergency room, right? Wrong. Mistakes and harm will likely still happen as a consequence of the complexity of our health care system and the ongoing challenges patients must go through to sort through their medical expenses. Obtaining care remains hard. With groceries and gas costing us more, these bills are only more troubling, resulting in inescapable debt. One in 10 adults . 

If America is serious about protecting its emergency room patients, particularly in the aftermath of the global pandemic, it must patch up this law to ensure patients have more protection against out-of-network expenses when they receive their bill. Outside the emergency room, patients, particularly uninsured patients, remain exposed to wallet-busting prices. America must move toward universal health care.

Despite its shortcomings, the No Surprises Act was the result of many years of advocacy. resulted in a surprise charge. The law now covers all hospitals, doctors, and nearly all health care providers except for ground ambulances; notably, the law bans surprise bills for air ambulances. While rare, this protection is important, as air ambulances are exactly the type of large expenses patients need help to pay. In 2020, a Pennsylvania coronavirus patient received a of more than $52,000 for a flight between two hospitals that happened while she was unconscious.

Unfortunately, patients may still get hit with a surprise bill, but the chances of it being as egregious are less likely. When they do occur, they speak to a larger issue of our billing mess. One major loophole of the law is that the law may not cover all urgent care centers for emergency care. While many urgent care centers are considered emergency providers, , particularly for those living in rural America.

Kaiser Health News also reported a case where a surrogate for pregnancy received emergency care for a premature birth for twins. The babies spent more than a week in the neonatal intensive care unit, but . They cited that the care was not necessary because of how the babies received care via the obstetrics department, and not through the emergency department.

The coding of these services and billing caused a mess for Cigna to sort through. Cigna rejected justification paperwork sent by the hospital for the bill to be covered by them. Cigna and the hospital pointed fingers at each other in how to deal with the pending out-of-network and uncovered expense, even as the hospital sent the account to collections to shake down the couple. After more than a year of haggling and appeals, the couple worked with a separate firm dedicated to resolve billing disputes to reduce the $80,000 bill significantly as they dealt with collections, the hospital, and Cigna.

In most cases, people won鈥檛 be surprised by a large out-of-network bill in emergency settings. We must protect those who are as the law enters its second year. 

Congress should require all physicians to join the same insurance networks as their hospitals, or force health plans to finance emergency care by paying hospitals for their services. This would allow hospitals to compensate physicians for their services on-site. Congress should also leverage average prices set by Medicaid, Medicare, or large private health plans for all non-network care. Medicare Advantage plans, privately managed care plans for many Medicare beneficiaries, already employ this practice for their patients for non-network care. 

Congress could also set prices for care, a tall order in our current political environment. This would help nullify high unexpected out-of-network bills. Physician groups and the American Hospital Association object to this reform, however, and given their outsize role in Washington, they had a role in shaping the current law.

To address billing disputes, the law organizes arbitration panels to hold patients harmless while health plans and providers sort through claims issues. This is a roundabout way of protecting patients and skirting price setting while adding to America鈥檚 already bloated administrative health care expenditures. The law to finance its arbitration and regulatory system. The U.S. Department of Health and Human Services that insurers will invest $5 billion to implement the act, and that operating costs might average $1 billion a year thereafter. Health plans will likely pass down these higher costs to beneficiaries and employers in the form of higher premiums and fewer benefits.

As it stands, this law does very little to protect against unchecked greedy actors exploiting loopholes of American health care. Until recently, a hospital staffing company employed a business model that , thereby fleecing patients in which health plans and providers acted as intermediaries. 

To be sure, patients willing to slog and wait out billing disputes often get their bills reduced. But with providers in and out of the emergency room still unleashing debt collectors on patients or making threats, they create unnecessary anxiety.

American health care is going to remain a . In November 2022, nearly 3 out of every 4 Arizona voters voted to place limits on debt collection, capping the limits of interest on medical debt at 3%. Joining those in Idaho, Missouri, Nebraska, and Utah, voters in South Dakota bypassed their Republican leadership and voted to expand Medicaid to more low-income citizens. Expanding Medicaid enables more low-wage workers to obtain treatment through public insurance, providing assurance that people won鈥檛 face high bills if they get sick.

Yes, we must close surprise billing loopholes and educate patients to scrutinize their bills, arming them with the tools to contest bogus bills. That鈥檚 vital as we emerge from the worst of the pandemic. However, it says something about a system that asks an unconscious patient to still verify that their ground ambulance ride is in-network prior to seeking treatment. 

Until America gathers more steam and transitions toward universal health care, patients will continue to cough up large portions of their paychecks for medical bills. To escape this billing minefield for emergency care, members of Congress must look beyond wealthy donors writing checks and enact reforms to better protect patients from debt-inducing costs. The federal government should play a larger role, too: Medicare is the nation鈥檚 largest insurer, and alongside other federal programs, it can better set hospital treatment pricing, ensuring more consistencies and standards of care across regions. 

Rather than hold on to remnants of our byzantine system, we must take steps toward enacting universal health care, reducing the eligibility age of Medicare, and expanding it to more kids so more people can take advantage of the government-sponsored health plan. 

Yearly, we hear politicians extol the unique problems of high medical bills. They must make good on their promises of making health care an actual right, not an empty slogan for stump speeches at their campaign events.

Harm reduction, like many radical philosophies, was co-opted by institutions of public health, social work, and the medical industrial complex (MIC). Activists fighting for the rights and safety of drug users; people in the sex trade, street economy, and involved in sex work; and people with chronic illness and disabilities sought to make the philosophy of harm reduction a part of the United States鈥� public health strategy in order to stem the spread of HIV/AIDS in the late 1980s. As a result of the successful work of these revolutionary organizers, some of you may have heard about syringe exchanges, the most popularized example of harm reduction.

What you may not know is that while the risk-reduction strategies embedded in harm reduction (condom distribution programs, syringe exchanges, etc.) did eventually become part of public health鈥檚 standardized approach to HIV prevention in most states, much of what actually makes up the daily practice of saving our own lives鈥攖he core values of the philosophy of harm reduction鈥攚as stripped away inside these institutional settings. The truth is that harm reduction was designed and created by drug users, sex workers, feminists, trans activists, people with chronic illness and disabilities, those of us working to end violence without the police, and those of us working to end prisons and the violent state. It is a practice steeped in joy, in living into the beauty of our lives no matter how messy they may (appear to) be.

We are not discussing 鈥減ublic health harm reduction鈥� here. Instead we are talking about harm reduction鈥檚 origins as a liberation practice鈥擫iberatory Harm Reduction鈥攁nd how it intersects and pushes healing justice practitioners to find a place for all of us in the work.

Redefining 鈥淩isky鈥� and Reclaiming Trauma-Centered Practice

In order to understand the philosophy of harm reduction, we have to interrogate our understanding of the idea of 鈥渞isky behaviors鈥� and reimagine our trauma-centered practice. The strategies survivors use to fight back, heal, cope, and, yes, seek pleasure are highly stigmatized and criminalized. Minimally, drug use and involvement in the street economy, the sex trade and sex work, self-injury, or not using prescribed (psychiatric or other) medication are often criminalized.

Survivors whose survival strategies have been deemed morally wrong or criminal are made even more vulnerable by healers and health care providers who lack a complex trauma analysis. We have become targets of a system that cannot make sense of us and seeks only to control us. Sometimes I think these systems have little help to offer, and other times I think these systems hoard resources from our communities intentionally and force us to fight each other for what little access we have. Depending on a person鈥檚 age, race, or gender presentation, the judgments of institutional representatives can and often do have carceral implications.

So we are forced to lie to our health care providers about our drug use, sex work, housing, medication adherence, and more to cover our tracks as much as we can. Even if we want to stop using drugs and seek out rehab or other forms of assistance, we are subject to humiliation and monitoring of our bodies that is designed to reduce caseloads and keep costs down.

When seeking medication-assisted treatment (MAT), like methadone or suboxone, the average person can wait months or even years to get into a MAT program, and then they must be free of other drugs to stay in the program. I have had several friends who intentionally became pregnant for the sole purpose of getting into rehab or on methadone because pregnant people have access to priority placement. If you felt shock or judgment come up when you read that statement, I invite you to answer it with curiosity and compassion. What is life like when becoming pregnant is the best option for someone who wants to get off drugs? What does it mean when the system is so violent that extremes become logical options?

When I was finally able to find a doctor who prescribed me suboxone, which is how I effectively stopped using heroin (but not all opioids) in my 30s, I was able to get into a program at my local syringe exchange. The program required a few hoops because it was in a harm reduction setting. This is far from a common experience, and I know that my community relationships are what kept me alive.

What Is Liberatory Harm Reduction?

This is the definition collectively created in the book Saving Our Own Lives: A Liberatory Practice of Harm Reduction:

Harm reduction is a philosophy and set of empowerment-based practices that teach us how to accompany each other as we transform the root causes of harm in our lives.

We put our values into action using real-life strategies to reduce the negative health, legal, and social consequences that result from criminalized and stigmatized life experiences such as drug use, sex, the sex trade / sex work, surviving intimate partner violence, self-injury, eating disorders, and any other survival strategies deemed morally or socially unacceptable.

Liberatory Harm Reductionists support each other and our communities without judgment, stigma, or coercion, and we do not force others to change. We envision a world without racism, capitalism, patriarchy, misogyny, ableism, transphobia, policing, surveillance, and other systems of violence. Liberatory Harm Reduction is true self-determination and total body autonomy.

Harm reduction disconnects the ideas of sobriety and healing. We center all of our lived experiences and don鈥檛 create false hierarchies with sobriety at the top. We honor decisions to be off medications, use herbs, or engage in the street economy though the sex trade or selling drugs. We hold each other close and fall in love with each other鈥檚 survival and survival strategies.

The idea of keeping our community safe from harm through the practices of abundance, love, joy, and welcoming each other as whole people is deeply rooted in the cultural practices of many Black, Indigenous, Latinx, and other people of color who find ways to survive in the United States. The impact of harm we are reducing results from the long-term impact of white supremacy, cisheteropatriarchy, ableism, and structural violence.

Where Does Liberatory Harm Reduction Come From?

Liberatory Harm Reduction focuses on transforming the root causes of oppression that cause the actual risk for illness, death, and incarceration.

In the United States, the story of the evolution of harm reduction predates the AIDS crisis. Parts of Liberatory Harm Reduction came through Marsha P. Johnson, Sylvia Rivera, and activists like Miss Major Griffin-Gracy, Trans Women of Color who were sex workers and street-based and who created shared housing, syringe exchanges, and sex work safety information. Liberatory Harm Reduction came through the Black Panthers creating free breakfast programs to feed and nourish a revolution, and from the Young Lords taking over Lincoln Hospital in the Bronx to demand鈥攁nd ultimately create鈥攃ommunity-accessible drug-treatment programs. It comes from underground abortion providers, Indigenous resistance fighters, and AIDS activists.

Liberatory Harm Reduction came to be because people in the sex trade; people of color; queer people; transgender, gender-nonconforming, and two spirit people; people with disabilities; people who were houseless; and fat people saved our own lives. It is a collective story of 鈥淏ad Date鈥� sheets passed between sex workers to warn each other of dangerous customers. It is the story of clean syringes, 鈥渓iberated鈥� from empathetic doctors鈥� offices and then passed between punks in squats in the East Village by women like Isabel Dawson and Kelly McGowan鈥攅arly AIDS activists鈥攚ho made sure that everyone had syringes and knew how to use them in 1983.

While it is difficult to say for certain when it all began because of the underground nature of syringe exchanges, Catlin Fullwood in Seattle and Women with a Vision both began Black and queer/lesbian harm reduction projects led by people with life experience using drugs and in the sex trades in 1986.

Much of the mainstream harm reduction movement that operates alongside public health has historically treated people in the sex trade as an afterthought. As though the most important intervention ever contributed to the field of harm reduction is syringe exchange and that sex workers, even those of us like me who also shot drugs, are not a central part of the creation of this life-affirming philosophy. The few books that are written about harm reduction barely touch on sex work and focus entirely on drug use. People in the sex trade and sex work and survivors of all kinds are the breath of Liberatory Harm Reduction because, as uncomfortable as this sounds to many, as people with life experience in the sex trade and sex work, we place the importance of relationships and care work as a core practice in everything that we do. Liberatory Harm Reduction hinges on the depth of relationships we have with each other.

The Intersections of Harm Reduction and Healing Justice

Healing justice is rooted in the philosophy of Liberatory Harm Reduction. The lifeblood of each is self-determination, the belief that healing and growth happen best inside long-term relationships, and the right for people to choose how and when they engage the allopathic medical model. They both demand that healers and health care providers fight the systems of power, like the medical industrial complex, prison industrial complex, and carceral social work. These systems form a dangerous web that interrupts our ability to get care on our own terms.

Healing justice and Liberatory Harm Reduction are inextricably tied up together because they are both about the active strategies that people use to collectively heal and push back on the medical model and MIC. The MIC tells people that the only way to have an acceptable body is to be nonsick, nondisabled, nonfat, and non-drug-using. The MIC tells us that we cannot have a normative body if we use it to make money via selling sex or use our bodies to regulate our trauma via self-harm. We cannot have acceptable bodies if we decide to not take our psychiatric medication, if we accept (or struggle with) our eating disorders, or if we hesitate to buy whatever supplement or prescription we are told to without being called 鈥渘oncompliant,鈥� 鈥渋n denial,鈥� or 鈥渞esistant to care.鈥�

Liberatory Harm Reduction and healing justice both are largely ignored by activists and popular thinkers because it is uncomfortable. Both require doctors, social workers, legislative policymakers, healers, and organizers to make room for the fact that their ideas of bodies, safety, and health leave out enormous swaths of our communities. It requires us to make room for the reality of what it means to show up in our bodies exactly as we are without anyone asking us to leave, change, or conform. At this point, ideas of health, wellness, and self-care, which may have been ideas that initially existed outside the MIC, are now so intertwined with capitalism that they have become lost to those of us who are committed to dismantling the medical industrial complex and disconnecting it from carceral thinking and systems.

Empowerment means being in control of your choices鈥攊t means self-determination and body autonomy鈥攔egardless of whether those choices make healers uncomfortable. For healing justice strategy to live into its full intention, it must be able to hold me as a complicated person, as someone who wants to feel better and yet does not want to be cured, as someone who wants to be whole and yet cannot be forced to be 鈥渆mbodied,鈥� as someone who wants to stay alive and may make choices you think are dangerous. Drug users, people in the sex trade and street economy, sex workers, those of us who self-injure or survive violent homes and relationships鈥攚e deserve strategies that value us. The ability to make change in our own lives and make change in the communities we live in鈥攖hat is our power.

Excerpt from  by Cara Page and Erica Woodland, published by North Atlantic Books, copyright 漏 2023 by Cara Page & Erica Woodland. Reprinted by permission of North Atlantic Books.

Mila, who has cerebral palsy, still required the care of a home nurse, as she recovered last fall from having a tracheotomy鈥攁 surgical opening in the throat to help her breath.

But no home nurses were available. So, due to staffing shortages and cracks in the health care system鈥攂ut not due to medical need鈥擬ila had to stay in the hospital. It had been two weeks since she was well enough to go home. She鈥檇 arrived in the hospital close to two months ago, and her family and the hospital discharge planner had been searching for a home nurse the whole time.

鈥淚t was just really hard,鈥� said Brokloff. 鈥淚t feels like [children with disabilities] and their parents are falling through the cracks.鈥�

Finding nurses to care for medically fragile children at home has . But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The pandemic set off a surge in demand for nurses at hospitals, clinics, and other health care facilities, and widened the compensation gap between these and lower-paid home nursing jobs. This pulled nurses away from home care. At the same time, large numbers of nurses 鈥攎any due to health concerns, retirement, and burnout鈥攕hrinking the overall workforce. As a result, fulfilling requests for home nurses has become close to impossible, those in the field said. That鈥檚 especially true for the California children with special health care needs who, like Mila, are insured through the state鈥檚 public health insurance program, Medi-Cal, which typically pays nurses less than private insurance.

鈥淚t鈥檚 worse than ever, it really is,鈥� said Dean Chalios, president and chief executive officer of the California Association for Health Services at Home.

To solve the issue, the association is calling on California鈥檚 governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40% in next fiscal year鈥檚 budget. Chalios said a rate increase would make pay for home nursing more competitive and attract people back to the field. It would also save the government money, he said, by keeping medically fragile children out of hospitals and nursing facilities. Both are more expensive than caring for children at home.

鈥淓ven with the economic downturn, now鈥檚 really the time to do it because it鈥檚 going to save Medi-Cal money in the long run,鈥� he said. 鈥淭his needs to be done. 鈥� These children need this help, these families need this help.鈥�

Parents of children with special health care needs interviewed by the California Health Report agreed that pay rates for home nurses need to go up鈥攕ome had themselves lost nurses to higher paying positions or jobs with better benefits. A few parents offered other suggestions too, such as providing more stable hours and benefits for home nurses employed through nursing agencies, offering more home nurse training at nursing schools, and making it easier for parents to obtain nursing qualifications themselves.

Families on Their Own

Without home nursing support, families can struggle to care for medically fragile children. Some children, like Mila, stay in the hospital longer than necessary or are sent to pediatric nursing homes, said Jerin Johnson with the nursing agency Aveanna. Parents intent on having their children at home often quit work to become full-time caregivers, placing economic strain on the family. They go without sleep because children who depend on medical equipment to stay alive often require overnight monitoring. To get a break, parents may turn to relatives or babysitters without medical training.

Children enrolled in Medi-Cal are to receive the nursing hours approved for them. The same is true for children in the California Children鈥檚 Services (CCS) program, a state insurance program for children with specific chronic conditions who require intensive levels of care. Most children enrolled in CCS are also enrolled in Medi-Cal, although some higher-income families qualify only for CCS. Nursing reimbursement rates are the same for both programs.

Since children enrolled in Medi-Cal are disproportionately low-income children of color, the difficulty in securing needed nursing care can exacerbate existing inequalities for them and their families. While wealthier families are more likely to have private insurance or can afford to pay out-of-pocket for home care, families with Medi-Cal are often left with very few options and have to fend for themselves.

Ambere Suarez of Palmdale is authorized by the CCS program and Medi-Cal to get round-the-clock nursing care for her 4-year-old daughter, Mia, who has severe cerebral palsy, is fed through a tube, is ventilator dependent, and has a tracheotomy. But since the pandemic, Suarez said she鈥檚 only been able to get a nurse for 14 hours on weekdays and eight hours on weekends, and even that is inconsistent. She said some nurses regularly come in late, call off work at the last minute, or fail to show up. Some have left for higher-paying jobs. Suarez has to fill in the gaps鈥攊ncluding supervising Mia on her ventilator overnight鈥攚hile also caring for Mia鈥檚 two sisters, ages 4 and 13.

鈥淚鈥檓 expected to stay up and watch my child, and then take my children to school,鈥� she said. 鈥淚鈥檓 expected to be this super mom when it鈥檚 impossible.鈥�

Suarez said she鈥檚 had to keep her oldest daughter home from school multiple times because she鈥檚 too tired to drive. The exhaustion has led to parenting stress and disagreements with her husband, who helps with the kids on weekends but works full time to support the family. She said she鈥檚 also developed depression because of the stress.

As for the Brokloffs, after failing to find a nurse for Mila, they decided to bring their daughter home from the hospital anyway. Jared Brokloff works full time, so it鈥檚 Analicia Brokloff鈥檚 job to care for Mila and the couple鈥檚 8-month-old daughter. Analicia got training at the hospital on how to care for Mila. But she still feels nervous managing her daughter鈥檚 health condition without any nursing backup. Mila鈥檚 grandmother helps, but she also has no medical background. In fact, Analicia had to train her, even though she doesn鈥檛 feel confident herself.

A few days after Christmas, just a month after her release from UC Davis, Mila was back in the hospital with pneumonia and sepsis. Analicia was heartbroken. She wondered if it was her fault. Did she miss a warning sign that her daughter was getting sick?

鈥淚 did my best to notice her signs,鈥� she said. 鈥淏ut I can鈥檛 help thinking if I had a nurse here that鈥檚 a little bit more experienced than I was, would I have caught it sooner?鈥�

Majority of Requests Go Unfilled

Without enough nurses, home health agencies are turning away large numbers of Medi-Cal patients. Based on surveys of its members, the California Association for Health Services at Home estimates that only about 30% of home nursing hours authorized by Medi-Cal for medically fragile children are being filled. At some agencies, the shortfall is even greater. One agency in suburban Los Angeles told the association it turned away 99% of Medi-Cal referrals, while another had 366 fragile patients on its waitlist. Some agencies have lost more than half of their nurses, the association said.

Aveanna, which serves special needs children throughout California, has over 200 Medi-Cal patients on its waiting list, said Johnson, the agency鈥檚 West Region president. And so few nurses are willing to accept Medi-Cal pay rates that many children on the list may never get a nurse, she added. Waiting lists are shorter for patients with private insurance or who can pay out of pocket. Private health insurance can pay as much as 200% of the Medi-Cal rate.

鈥淲e鈥檙e just seeing a really significant social impact on (children and) the families and impact to their health,鈥� Johnson said. 鈥淭hey鈥檙e not getting the care they need to stay at home, healthy, and out of the hospital.鈥�

Johnson and Mike Beams, regional vice president of the nursing agency Maxim Healthcare Services, agreed Medi-Cal rates need to change. Current rates for home nurses range from between $19 and $45 an hour to $28 and $68 an hour, depending on the type of nursing provided and experience level (a portion of this rate is usually absorbed by the nursing agency). The state did increase rates by 50% in 2018, but that was after 15 years of stagnation and has not been enough to account for the effects of inflation, agencies said. Beams said California鈥檚 rates are now lower than surrounding states like Arizona, Nevada, and New Mexico.

鈥淲ith rates being stagnant, we haven鈥檛 been able to increase pay rates to keep up with rising costs of living anywhere in California,鈥� he said in an email. 鈥淭his has caused us to lose longtime staff who have been with patients for years and forced us to focus our limited recruitment resources on backfilling current positions.鈥�

Lori Ann Dotson, who lives in San Diego County and has worked in the disability field for decades, said other changes are needed too. Dotson is mother of a 9-year-old daughter with severe disabilities and has also struggled to get nursing care, even though she and her husband have private insurance in addition to Medi-Cal.

Dotson said nursing schools need to introduce more students to the home nursing field and help build up the home care workforce. She suggested pay rates for home nurses be similar, regardless of whether they鈥檙e a licensed vocational nurse or a registered nurse. The current structure, which reimburses more for registered nurses because they have more training, incentivizes agencies to hire these nurses over licensed vocational nurses, even though both can do home nursing, Dotson said. Additionally, home nurses should be given more opportunities for advancement and more stable pay and benefits to make it a more attractive career, she said.

Analicia Brokloff, meanwhile, has come up with her own solution. She鈥檚 studying to become a nurse herself so she can get hired through an agency to care for her daughter. She recently started a four-week nursing assistant program and plans to train as a licensed vocational nurse after that. Eventually, she hopes to become a registered nurse, which would take about two years. Her mom watches Mila while she鈥檚 in class.

鈥泪蹿 I can鈥檛 find a nurse, I鈥檒l just be nurse,鈥� she said. 鈥淭hat鈥檚 kind of the only option that we鈥檙e left with.鈥�

She worries about other families of children with disabilities that don鈥檛 earn enough to have one parent stay home, or to even think about pursuing a nursing qualification.

鈥淚t just makes me sad,鈥� she said. 鈥淲e鈥檙e trying to get this help and we鈥檙e going to these lengths to make sure that our kids are happy, but it鈥檚 not manageable right now, it鈥檚 really not.鈥�

This story was produced in partnership with the .

People who use medical devices that depend on electricity need continuous access to electricity. Some of my son鈥檚 most critical machines鈥攕uch as his ventilator鈥攈ave built-in battery backup. But other machines, like the oxygen concentrator that supplies oxygen to help with breathing and the humidifier that adds moisture to the air from the ventilator, need to be plugged in. Previously when the power went out, I had to scramble to jerry-rig his ventilator circuit to run without many of the accessory machines he usually uses. This required making quick, complicated changes in the dark鈥攑utting his health at risk. I then had to quickly figure out a way to get to a place with electricity.

But on this occasion, for the first time, I had access to a portable power station. That meant I was able to simply unplug the machines from the wall and plug them into backup power without the outage affecting my son.

Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology. The battery takes up about the same amount of space as a suitcase, and using it is as simple as turning it on and plugging equipment into it. But even though this lifesaving technology exists, most people who need it don鈥檛 have access to it because of cost.

The power bank that we used to keep my son鈥檚 equipment running overnight was funded by my utility provider, Pacific Gas & Electric鈥檚 (PG&E) Disability Disaster Access and Resources Program. This program pays for portable backup batteries, food replacement, transportation, and hotel stays related to power outages. The program works well鈥攂ut only a limited number of California residents qualify. It鈥檚 only open to disabled PG&E customers who live in high-fire-threat areas subject to Public Safety Power Shutoff, a particular type of planned power outage intended to reduce the risk of wildfires. PG&E鈥檚 program isn鈥檛 available in the cities where most customers live. Other utilities with these programs have similarly narrow restrictions. Those who live in other states, such as the 1-year-old in New York whose mother had to use a bag valve mask to manually give breaths to her child when the ventilator battery ran out, are also in need of backup power.

For people who depend on electricity-powered medical devices to live, any power outage is an emergency. When I鈥檓 scrambling to change the arrangement of my son鈥檚 ventilator circuit in the dark, I don鈥檛 care whether the power is out because of a wildfire threat or because a car knocked over a power pole. From a practical standpoint, it doesn鈥檛 make sense for one type of outage to be eligible for utility-funded backup power and the other not to be.

Access to electrical power during outages is an equity issue for low-income California residents. The power bank that we used to keep my son鈥檚 equipment running retails for almost $6,000鈥攁s much as a decent used car. In California, 26% of people with disabilities live below the poverty level. Families don鈥檛 have thousands of dollars to spend on a device that will be used, at most, a few times a year. The sad irony is that because portable power stations are so costly for many families, those who can鈥檛 afford them may end up calling 911 during outages and requesting ambulance transportation to a hospital, an even larger expense.

Gasoline-powered generators are cheaper, but not a good option for many disabled people in an emergency. These generators require a well-ventilated outdoor space for safe operation. People who live in apartments typically don鈥檛 have access to a place to safely operate gas generators, or a way to store them when not in use. Setting up and operating an outdoor gas-powered generator also requires substantially more strength and agility than using an indoor power station. Using an indoor portable power bank is as easy as bending over to plug equipment into the device.

Access to electrical power during outages is critically important as climate change brings wildfires, hotter summers, and more unpredictable storms. When the power grid fails, it鈥檚 an inconvenience for most people, but a matter of life and death for disabled California residents who depend on medical devices that need to be plugged in. The limited program that utility companies have in place proves they can identify customers who have a medical need for backup power and build a distribution network to get them the devices. California鈥檚 public utilities should build on this program and expand it across the state to any consumer who needs continuous power for medical devices.

This column was produced in partnership with the .

She was a 19-year-old college student, married to a man 10 years her senior. One night, after beating her severely, her husband called the police to their Las Vegas home. Brooks was bruised, scratched, and bleeding, and assumed they would take her side. But her unscathed husband insisted Brooks had attacked him, a victim-blaming tactic not uncommon among domestic abusers. The officers, all White like her husband, whisked Brooks, who is Black, to jail. They released her back to her abuser the next day.

鈥淭he message that (was) communicated to me was, 鈥楾he police aren鈥檛 here to help me,鈥欌€� says Brooks, now 45 and living in Oakland. 鈥淚 never called them again.鈥� 

Brooks鈥� experience isn鈥檛 unusual. A 2015  Hotline found that about 75% of survivors who called the police on their abusers concluded the police involvement was unhelpful at best, or at worst made them feel less safe. A quarter reported they鈥檇 been arrested or threatened with arrest when reporting partner abuse or sexual assault to police. About half of survivors never called the police. Survivors cited fear of discrimination by police, invasion of privacy, wanting to protect their children, not wanting their partner arrested, or concern that involving the authorities would exacerbate the violence. 

鈥淸I am afraid] of making the situation worse,鈥� one survivor who did not call police told the hotline. 鈥淭hey might arrest my abuser, and when he is out, he will hurt me like he has threatened.鈥�

Another survivor who did call the police says, 鈥淚 felt the police were buddy-buddy with my partner and ignored what I had to say and the reality of the situation. I was scared and they ignored me.鈥�

Faced with findings and experiences like these, researchers and survivor advocates are increasingly searching for alternative ways to address domestic violence. If involving the police and criminal justice system isn鈥檛 a good option for most survivors, why is it offered to them as the main pathway for seeking help? The conversation has gained new urgency amid the rise of the Black Lives Matter movement and calls to reevaluate the scope of police funding and responsibilities.

鈥淔or decades, survivors have told us that it鈥檚 not safe for them to call law enforcement, that they don鈥檛 want to be ushered into a criminal justice system,鈥� says Colsaria Henderson, board president for the California Partnership to End Domestic Violence. 鈥淲hat they want is the ability to be safe in their home and in their families. They want the violence to stop.

鈥淚t鈥檚 really time that we recenter on what the survivors are telling us.鈥�

Indigenous and LGTBQ perspectives

Immigrant victims of domestic violence can face other hurdles. Some avoid calling the police out of fear that they or their family members will be deported, says Dulce Vargas, who coordinates a domestic violence intervention and prevention program for the Mixteco/Ind铆gena Community Organizing Project in Oxnard, which serves Ventura County鈥檚 large Indigenous immigrant population. Survivors and their children may also be reliant financially on their abusers and have no family in the country that they can turn to for support. If an abusive partner is arrested or deported, survivors worry they鈥檒l be left destitute, Vargas explained. Also, police officers usually don鈥檛 speak Indigenous languages or understand the cultural dynamics of the community, which further deters these survivors from calling.

Mistrust of law enforcement is also pervasive within the LGBTQ community, says Terra Russell-Slavin, deputy director of the policy and community building department at the Los Angeles LGBT Center, which offers help to those dealing with domestic violence. That鈥檚 partly because the legal system historically criminalized gay and transgender people, and even condoned police violence against them. LGBTQ survivors are still subject to higher rates of wrongful arrest, Russell-Slavin says.

鈥淢uch of the (police) assumption and assessment is based on (traditional) gender roles, and that just doesn鈥檛 hold true for LGBT survivors,鈥� she explains. 鈥淭hat can lead to survivors being deemed perpetrators because maybe they鈥檙e more masculine presenting or they鈥檙e relying on size differentials and other factors.鈥�

Survivors of sexual violence sometimes also find police intervention ineffective. After suffering a sexual assault seven years ago, Laura Heraldez, 41, of Bakersfield sought help at a hospital, where employees called the police. But, she says, when the officers arrived they dismissed Heraldez鈥檚 story and refused to authorize a rape kit because she had been drinking. 

鈥淭hey told me that I was drunk, that I was not raped,鈥� she recalls. 鈥淚t caused me to numb everything and not get the help I needed. I didn鈥檛 seek therapy, I got absolutely no help. I was in complete denial of what happened to me, because you get told something and you start believing it.鈥� 

鈥淲e鈥檝e informally done it for centuries鈥�

The search for more effective interventions has become even more important during the COVID-19 pandemic. Reports of domestic violence have soared as survivors are confined at home with their abusers, and families face greater economic and emotional pressures. 

So far, there is no broad agreement on exactly what alternative solutions to address domestic violence should look like. But some ideas are coming into focus. They include creating trained networks of community volunteers to intervene in domestic disputes, engaging survivors and their partners in restorative justice proceedings removed from the criminal legal system, and establishing programs that encourage men to embrace healthy definitions of masculinity.  

Brooks, who is now executive director of Justice Teams Network, a coalition of organizations dedicated to eradicating state violence, is a leader in the effort to identify alternatives. For the past year, her organization has been working on a toolkit that lays out principles and strategies communities can use to create their own responses to inter-partner abuse. The work is based on conversations with community members and organizations around the country who are working to address domestic violence and police overreach, mainly in communities of color, she says. It also draws from a program she helped launch this summer in Oakland called Mental Health First, which offers a hotline people can call instead of 911 for help de-escalating psychiatric crises.

Statistics show people of color are more likely than White people to be incarcerated and .  One study estimated that Black men are 2.5 times more likely to be killed by law enforcement than White men. Women of color and those living in poverty also face disproportionate rates of criminalization and are more likely than White women to be criminalized and punished for surviving violence, .

While the toolkit is still a work in progress, Brooks outlines some main principles. Advocates agree that responses should be localized to individual communities or even neighborhood blocks, be culturally sensitive, and have broad community oversight. They should also allow survivors to decide about how they want the violence addressed, and incorporate interventions that help the entire family (including children and the perpetrator). Although law enforcement should be a last resort, there must be a plan for when calling police is appropriate to ensure safety, she added. Brooks shares that she envisions small crisis intervention teams run out of churches, mosques, or community centers, likely staffed by volunteers and funded through local philanthropy. 

One solution might be similar to the Mental Health First hotline in Oakland, which responds to mental health crises, including those involving domestic violence. A survivor or person concerned about a domestic violence incident would call a hotline staffed by trained volunteers such as doctors, nurses, mental health professionals, and community members. A team of the volunteers would then respond in person to the incident, work to de-escalate the situation and connect the parties involved with community resources such as shelters, mental health treatment, or financial assistance.  

Some organizations have also tried to resolve domestic violence disputes through a process called restorative or transformative justice. The process varies, but in general it involves a mediated discussion that includes the survivor, perpetrator, and community members. They discuss the violence and its impact and then agree on a safety and reparations plan鈥攊ncluding a way for the perpetrator to be held accountable. Alternative approaches to handling domestic violence have long existed informally in communities of color, where mistrust of law enforcement runs deep, says Henderson. They are people or groups that survivors turn to for help, such as a local pastors, attorneys, friends, relatives, or even hairstylists, she says. 

鈥淲e鈥檝e informally done it for centuries,鈥� says Henderson. 鈥淏ut it didn鈥檛 have a dedicated number to call. It didn鈥檛 have a true, regular avenue to flourish.鈥�

Optimizing these alternatives and making them widely available will require funding and establishing pilot projects in communities, she and others agreed. Anita Raj, director of the Center on Gender Equity and Health at the UC San Diego School of Medicine, says a key barrier to establishing alternative approaches is a lack of money to explore what might work. Significant government funding is needed to make that happen.

One attempt at the state level to fund alternative responses to domestic violence was vetoed by Gov. Gavin Newsom in September.  would have provided grants of at least $250,000 to help community-based organizations establish pilot programs that address emergency situations such as domestic violence without involving the police. In his veto letter, the governor disagreed with the bill鈥檚 proposal to house the pilot program under the California Office of Emergency Services. Instead, he wanted it under the Board of State and Community Corrections. Supporters felt this was antithetical to the purpose of the bill, because the alternatives should be separate from the criminal legal system. 

It鈥檚 important to acknowledge that some survivors do find police help effective and they want access to law enforcement, says Russell-Slavin. Police intervention is one tool for addressing domestic violence, Russell-Slavin explains, but may not be the best tool for every situation.

A Society That Has Allowed Violence and Racism to Flourish

Whatever solutions eventually emerge, most advocates agree they need to involve the perpetrators of domestic violence. Statistically, most often, that means men, although women and nonbinary people can be abusive too. An estimated one in four women and one in 10 men in the U.S. experience sexual or physical violence or stalking by an intimate partner in their lifetimes, according to the , although incidents are likely underreported. African Americans, Native Americans, and multiracial people are at highest risk for domestic violence, according to a . 

Marc Philpart is principal coordinator of the Alliance for Boys and Men of Color at PolicyLink, a national network of community-based organizations seeking policies that better support the wellbeing of boys and men of color, and their families. That includes policy shifts in responses to inter-partner violence. The organization argues that domestic violence needs to be treated as a public health problem arising from societal norms and structures that have allowed violence, racism and misogyny to flourish. Embroiling perpetrators in the criminal legal system only exacerbates that violence, Philpart says. He adds that men need a chance to learn new patterns of behavior, heal from their own traumatic experiences, and become positive agents of change in their relationships and communities, he continues. 

鈥淲e鈥檝e found ourselves in this situation where men aren鈥檛 involved in solution making and in safety planning and in stabilizing relationships,鈥� Philpart continues. 鈥淭hat one-sided approach has done nothing but deepen male involvement in the carceral state and in the criminal legal system, and it also has led to significantly more destabilization in families and hasn鈥檛 helped to break the cycle of violence in a way that has been productive.鈥�

The only widely funded education programs now targeting perpetrators of domestic violence are so-called 鈥渂atterer intervention programs.鈥� These programs are typically overseen by county probation departments, and men attend because they鈥檙e required to by court order. The forced nature of the programs and the association with the legal system mean that men who attend feel stigmatized, Philpart explains. There is little evidence that these programs work to change men鈥檚 behavior or keep victims safe, an outcome some critics attribute to .

To reach more men, programs like these should be overseen by agencies like public health departments, not probation agencies, says Philpart. They should be promoted as open to anyone who wants to participate, not just those convicted of a crime. And they need to reflect the culture of the community they鈥檙e serving, Philpart added.

The San Jose-based  has offered programs like this for years, although they are run by community-based organizations rather than local governments. The nonprofit has developed a concept called 鈥渕en鈥檚 circles鈥� in which men come together to assess their own misguided ideas about manhood, explore these within the context of their experiences with systemic racism, oppression and childhood trauma, and develop a new understanding of what it means to be honorable based on their cultural heritage. The circles largely serve men of color鈥攍argely those who are Latinx, Native American, and Black. They also welcome people who are gay, lesbian, bisexual, queer/questioning, and transgender. Some of the participants are referred by probation departments, but the programs also serve people in general who are seeking ways to improve their relationships, says Jerry Tello, who founded the nonprofit.

Dozens of men鈥檚 circles exist in California and across the country. The organization also has nonviolence programs that target specific groups of men and boys, such as fathers, teenagers, and gang members. Also, they run circles for women and mothers on how to improve family relationships and raise healthy boys. 

鈥淲e deal with the woundedness, and underneath the woundedness is a sacredness. If men don鈥檛 believe that,鈥� they can鈥檛 change, says Tello. 鈥淩eally this is a process and a movement and a re-grounding of manhood, a re-grounding of what it means to develop in a healthy way.鈥�

The Mixteco/Ind铆gena Community Organizing Project also runs a domestic violence intervention and prevention program for both men and women. Living With Love is a series of workshops held in Spanish and the Indigenous language Mixteco, that focuses on how to have healthy relationships, the impact of domestic violence on families and children, and what to do if someone is experiencing domestic violence. The program, which is funded by the California Department of Public Health, encourages participants to explore the reasons for their own violent behavior, such as childhood trauma, says Vargas, the coordinator. She advertises the program as being about healthy relationships and self-care, rather than specifically about domestic violence, at tactic that reduces stigma and encourages people to participate.

To make interventions like this more widely available, the Alliance for Boys and Men of Color recommended in a  last year that California create a statewide office focused on violence prevention and intervention, increase violence prevention programs and services in schools, and increase funding for community-based solutions to end domestic violence. 

Brooks left her abusive husband in 1994, but she wonders what difference the alternative intervention strategies now being proposed would have made for both her and her ex-partner if they鈥檇 had access to them. 

鈥淚 could have gotten the help I needed, the healing I needed,鈥� she says. 鈥淢aybe he could have too.鈥� 

This story was produced in partnership with the  and .

 is a health policy researcher at the University of California, Los Angeles, who studies HIV treatment and prevention. She explains the history of the ban and the reasoning behind its long-awaited reversal.

1. When and why did the ban begin?

When the FDA  in 1983 for men who have sex with men, there were good reasons for broad regulations to ensure the safety of the blood supply. At the start of the AIDS epidemic, public health officials were dealing with an unknown virus that was spread through unknown means. Researchers  a year later, in 1984, and it took another year to approve the first test to screen blood donations for HIV in 1985.

Despite the ban on blood donations from men who have sex with men, there was some small risk that failures in  and  could lead to transmission of HIV or other diseases from blood transfusion. But over the years, scientific advancements and strict protocols have helped to nearly  through blood. In fact, the last documented transmission of HIV through the a U.S. donor鈥檚 blood product .

Starting in 2013, the U.S. government began implementing a  the safety of the U.S. blood supply for a variety of different pathogens, including HIV.

2. Why lift the ban now?

While the blood donation ban鈥攁s well as many other 鈥攚as reasonable at the time, the science has changed. Researchers and public health officials have gained a better understanding of how HIV is transmitted and the risks associated with different activities. Given today鈥檚 knowledge, many  that the benefits of the ban no longer outweigh the hit to the blood supply or the harm caused by what is a discriminatory rule.

The FDA has been slowly working toward this change. In December 2015, the organization took a big step by allowing men who have sex with men to donate blood if they haven鈥檛 had . That period was  in April 2020, during the height of the COVID-19 pandemic, to help fight a .

While a step in the right direction, these updates didn鈥檛 change the blunt assessment by the FDA that men who have sex with men are performing high-risk sexual behaviors and are themselves high-risk donors. Researchers and gay-rights advocates have long argued that  and fail to realistically consider the differences in risk associated with the type of sex, type of relationship, number of partners and frequency of sexual encounters.

The FDA鈥檚 latest  go a long way toward improving clarity about what makes a person a high-risk donor and remove the blanket categorization of prospective donors based on their gender and sexual orientation alone.

Under the new guidelines, there is a way to differentiate between individuals who are monogamous and those who are not, as well as between those who have not engaged in anal sex in the prior three months and those who have. The recommendation now suggests that blood donor history questionnaires be used to evaluate an individual鈥檚 risk, rather than a reliance on broad categorizations. If the assessment finds an individual to be high-risk, then the guidelines recommend that person be prevented from donating blood for three months.

3. What effect could this have on the blood supply?

The FDA鈥檚 latest move represents a seismic shift for men who have sex with men as well as for the .

According to recent research, a conservative estimate suggests that the lifting of the ban will lead to a . With the ongoing blood shortage, that increase could help save more than a million lives. In addition, removing gender and sexual orientation from the risk assessment for blood donation will take the U.S. one step further in addressing stigma and discrimination against men who have sex with men.

This article was originally published by . It has been published here under a Creative Commons license.

I know, because my son was institutionalized in a pediatric subacute facility for most of the first year of his life. When he was only a few weeks old, he had surgery to place a tracheostomy tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome. Care of a child with a tracheostomy, especially a tiny infant, requires constant supervision and intervention to keep the breathing tube open and in place. I remember being told that the mortality rate for children with tracheostomy tubes in the first year of life was so high that the hospital had to send them to a facility for transitional care. It was presented as a place where both his medical needs and his developmental needs would be met, because it was supposed to be more homelike than the hospital.

At the time this was happening, I didn鈥檛 know what care at home could look like for a child with complex medical care needs. I didn鈥檛 even know it was an option. My husband and I were making decisions based on the information that was presented to us. I wasn鈥檛 an advocate. I didn鈥檛 know the history of disability rights and the fight for disabled people to receive care in their own homes, not nursing homes. I was just a mom, convincing myself that I had made the right choice of how to take care of my son in a situation where I didn鈥檛 actually have any good options. On the one hand, the facility felt less alien than the NICU. On the other hand, it didn鈥檛 feel like home either 鈥� it felt like a clean and well-run orphanage.

Institutionalization refers to care that is provided in a location other than home. The location can be the rehabilitation wing of an acute care hospital, a pediatric subacute facility, like where my son lived, or a specialized home for children with developmental disabilities or medical needs. In some situations, children with medically complex disabilities spend months in the Intensive Care Unit, the most expensive and least developmentally appropriate place for kids. Institutionalization is orders of magnitude more expensive than home care and developmentally harmful for children. It also disrupts the lives of parents and siblings.

When my son was born, we lived in a small rural town in Fresno County. The closest facility that met my son鈥檚 medical needs was 170 miles away in the Bay Area. California only has 10 pediatric subacute facilities, two in the Bay Area and eight in Southern California. During this time, as a mother, my heart was broken no matter where I was, because whether I was at home or at the hospital, something was always missing. Our family eventually settled into a routine. I would drive up and stay in the Bay Area Tuesday through Thursday in order to be at the facility with my son, and my husband would take our daughter to daycare. Friday through Sunday we would bring our daughter to the facility. As a toddler, she quickly learned that she was allowed to mute her brother鈥檚 pulse oximeter but not any of the other children鈥檚 machines.

When I couldn鈥檛 be at the facility, my son spent most of the day alone in his crib. If he had been at home, I could have picked him up when he cried. Picking up a crying infant is a basic human instinct because being held is a basic human need. In the facility, if I wasn鈥檛 there, he would cry alone in his crib. He would cry until he spit up whatever formula was in his stomach, then stomach acid, then intestinal bile. This eventually spiraled into total oral aversion 鈥� he vomited so much and so often that he rejected oral feeding and a pacifier, anything that touched his mouth or lips would trigger a gag reflex. This also worsened the problem of not being picked up 鈥� when the staff did have time to pick up one of the babies, they tended to avoid the one who was constantly vomiting and leaking stomach acid.

The root cause of the problem was that his basic human and developmental needs 飞别谤别苍鈥檛 being met. That problem couldn鈥檛 be solved as long as he lived in the facility. Instead, doctors changed the way he was fed, using a system that drained his stomach to keep it empty and delivered formula directly to his small intestines at all times. With that system, he could cry and gag constantly but still gain weight because there wasn鈥檛 anything in his stomach to throw up. That was the kind of solution that institutional care could provide.

In order to bring our son home from the subacute, my husband and I had to demonstrate competence in the medical parts of his care. That part was difficult by any objective measure, but was easy compared to the second requirement. The facility also required us to find home nursing coverage 鈥� their initial requirement was that we have 16 hours a day of coverage, including overnight coverage, seven days a week. That requirement was insurmountable, but I spun my wheels for months trying to meet their demand. To bring him home it was my job to find home nurses, a supplier for his breathing machines, a pharmacy that could fill compounded and specialty prescriptions, and figure out all of his insurance and Medi-Cal paperwork. Institutional care provided all those things automatically, home care required me to be the ringmaster of the whole circus.

The facility eventually agreed to release him to home care on the condition that we find a day-shift nurse and agree to sleep in shifts for the rest of our lives. One of the most common and tragic ways that children with tracheostomies die is that an emergency happens overnight, and the exhausted parent sleeps through the alarms and doesn鈥檛 wake up in time to resolve the problem. I can still hear the doctor鈥檚 stern intonation when she told us, 鈥淵ou can never fall asleep.鈥� She was solving the problem that she perceived 鈥� kids die when their parents fall asleep. But the solution she was providing put the blame and responsibility on the people with the least amount of power in the situation. The assumption was that the system of home care wasn鈥檛 going to be functional, and the solution was for parents to simply never sleep.

When children are dependent on medical technology 鈥� like ventilators, IV nutrition, feeding pumps and home dialysis 鈥� and require round-the-clock nursing interventions, our system struggles to provide that care outside the four walls of an institution. In institutional care, the system seamlessly provides equipment, supplies, medications and care for kids with complex medical needs. By contrast, bringing medically fragile children home is a do-it-yourself project for families. Our system can do more to make the transition to home care smoother, and to make sure children have real access to care at home with their families.

Spending time in acute care hospitals may be unavoidable for these children when they receive treatments that can鈥檛 happen anywhere else. But in many situations, we could do more to allow these children to stay at home, instead of being forced to live in institutions that provide medical care. Our children and families deserve better.

This story was produced by the .

Then, 15 years after giving birth to her son, she found herself pregnant again. She faced insults and name-calling daily because of her age and the long gap since her first baby. Both are considered shameful by those who carry conservative beliefs in India. 

Kumbhar, 34, tried ignoring the criticism, but even her brother abused her verbally. 鈥淚s this even an age to get pregnant?鈥� he asked her. Meanwhile, a few neighbors offered empty congratulations, saying they hoped she鈥檇 give birth to a boy, highlighting the social disdain toward female children.

鈥淔or me, pregnancy was a big thing,鈥� Kumbhar says, recalling the difficulty of her first. 鈥淚t made me happy for a while, but I had mixed feelings later. I was confused between childbirth and getting an abortion.鈥� 

Many people in her position in India have very few options. Abortion is legal, per India鈥檚 Medical Termination of Pregnancy Act of 1971, but that doesn鈥檛 mean it鈥檚 accessible. Government records show that for the more than of childbearing age in the country, India just has public health facilities that provide abortion up to 12 weeks, and merely 4,213 public health facilities that can abort up to 20 weeks. 

As a result, unsafe abortion remains India鈥檚 third leading cause of maternal mortality, with women dying every day. unsafe abortions are carried out in India annually, and most of these are provided to people from marginalized communities. 

Stressed and unsure where to turn, Kumbhar contacted community health care worker Maya Patil, a resident of Kutwad village in Western India鈥檚 Maharashtra state. Patil took Kumbhar to a doctor who explained that there could be a potential risk to both the mother and her unborn child. During pregnancy, fetal blood cells can cross into the mother鈥檚 blood system. If the mother and fetus have different Rhesus (Rh) factors, for example the mother has Rh-negative blood and the fetus has Rh-positive blood, then the mother鈥檚 immune system sees the fetus鈥檚 cells as enemy cells, and responds by producing antibodies. This was the case in Kumbhar鈥檚 first pregnancy. There is an intervention called the Rhesus injection, which, if given after a childbirth, can slow or prevent that immune response in a subsequent birth. But since she didn鈥檛 receive the injection after her first childbirth, there was a good chance she could experience an even faster immune response to the fetal cells this time around. When these antibodies cross the placenta and enter the blood of the developing fetus, they can lead to permanent nerve damage or even death. Hypothyroidism further complicated the health risks of pregnancy for Kumbhar, who was already experiencing anemia, muscle pain, hypertension, and weakness due to the condition.

But there is a widespread societal belief in India that an abortion is sinful and equivalent to killing someone. Kumbhar鈥檚 husband and neighbors鈥攖he same neighbors who were criticizing her for being pregnant鈥攏ow pressured her not to abort. It took Patil multiple visits to explain to Kumbhar and her husband about the risks involved and why abortion was the only safe option. She spent several hours counseling the couple, ensuring them that she had their best interests in mind and that her recommendations were based on medical science, not societal pressures.

Finally, Kumbhar made a firm decision to end the pregnancy. The local community doctor referred her to the district hospital 50 kilometers away, which she visited multiple times in search of treatment. Each time she went, the doctors would shun her when she tried to talk to them, and ask her to visit some other day. 鈥淣one was serious,鈥� she says. After four such visits, collectively traveling more than 400 kilometers via a series of public buses despite her severe physical weakness, Kumbhar lost her calm. She asked Patil if she should reconsider her decision.

Working hard to get Kumbhar the treatment she needed, Patil dialed a few doctors and the administrative staff and found that the district hospital was oversaturated and understaffed. A 2020-21 government report that India has only 25% of the obstetricians and gynecologists they need to keep up with the existing patient load. Patil pleaded with the doctors and was able to get Kumbhar a timely abortion. 

But the public health care facility鈥檚 limited resources and old equipment led to yet another brush with death. 鈥淭he medical devices malfunctioned,鈥� Kumbhar remembers, teary-eyed, 鈥渁nd I was in the hospital for nine days.鈥� Kumbhar recovered but calls it one of the worst phases of her life. Had it not been for Patil鈥檚 consistent support, Kumbhar says she wouldn鈥檛 have survived. 鈥淭he trauma was just unbearable.鈥�

Accessiblity of Care

To make abortion accessible, health care workers like Patil spend countless hours working well beyond their duties. Patil is an Accredited Social Health Activist (ASHA), and is responsible for bringing health care to rural areas. There are approximately 1 million accredited social health activists in India鈥攐ne assigned for every 1,000 people in India鈥檚 villages. They perform more than 70 different healthcare-related tasks, including distributing medicines for common ailments, handling pre- and postnatal care, ensuring universal immunization, and much more. 

Many ASHAs across India are risking their lives to make abortion accessible. 

As with Kumbhar, ASHAs like Patil talk to the doctors on behalf of patients, explaining their situations and advocating for their care. Several times, Patil has faced abuse for this, from both doctors and community members. And in some cases she鈥檚 had to reach out to ASHAs from different states in India for support. But she keeps going until the needed care is provided. She has helped many people, including minors and single women鈥攕everal of whom were victims of sexual abuse and incest鈥攁ccess abortion safely. 

Patil recalls a case five years ago where an unmarried woman got pregnant. When the woman sought an abortion, multiple public doctors asked intrusive questions and denied her abortion without giving a reason. After three months of failed attempts, Patil got involved. She talked to the doctors on the patient鈥檚 behalf and explained the urgency of the situation. When Patil refused to answer the doctors鈥� inappropriate questions about the patient鈥檚 personal life, she was yelled at and verbally abused. In this case, she had to call a senior public health care official in order to get the patient the care she needed. 

The task doesn鈥檛 end there, though. Often ASHAs spend months counseling people who face scathing remarks from their families before or after an abortion. ASHAs even take patients to psychologists for therapy. This is significant, especially because for the population of 833 million people currently living in India鈥檚 villages, there are just 764 district hospitals and 1,224 subdistrict hospitals with clinical psychologists and psychiatrists.

A 2017 World Health Organization found that India has less than 7 psychiatrists for every 10 million people. 

Accredited social health activist Netradipa Patil, from Maharashtra鈥檚 Shirol region, says, 鈥淚n cases of rape, the district hospitals first ask us to get a police case registered and bring several documents before aborting鈥攄espite an emergency. It鈥檚 not easy to get a case registered, and the district hospital staff first asks several uncomfortable questions intruding on privacy and then ask the victims to revisit later.鈥� In such cases, she has observed that the victims are forced to reach out to quacks and faith healers, often risking their lives, to end their pregnancies in a timely manner. In other cases, Netradipa Patil says the paperwork and red tape require so much time that the pregnant people end up giving birth. 

鈥淵es, we are given reproductive rights, but it鈥檚 not easy to avail of them,鈥� she says. 鈥淎bortion is legal in India, but the process is the punishment.鈥�

How Abuse and Stigmatization Are Leading to Unsafe Abortions

鈥淢any public doctors abuse and insult abortion-seeking women to such an extent that they are forced to use unsafe abortion methods,鈥� says Maya Patil. She recalls an incident two years ago where a doctor berated a pregnant woman, saying, 鈥淗ow many children do you want? Are you going to give birth to a dozen more?鈥�

In the face of such ill-treatment, many pregnant people tell ASHA workers that they are ready to suffer in silence rather than visit the government doctors, Patil says.

One among them is Archana Kamble (name changed for safety reasons), 30, who refused to visit a doctor to get an abortion. 鈥淚 just took a few emergency contraceptive pills,鈥� she says. But afterward, the bleeding and heavy cramps didn鈥檛 stop, even after 17 days. Kamble then reached out to her safest point of contact, Maya Patil, who encouraged her to consult a doctor.

However, fearing the insults, Kamble refused to go to the doctor and continued working, lifting heavy farm loads for another 13 days. 鈥淚t was almost a month, and my bleeding wouldn鈥檛 stop,鈥� Kamble says.

Eventually, dizziness and fainting forced her to reach out for medical help; Patil accompanied her. However, just as Kamble feared, the doctor she visited yelled at her for attempting to terminate the pregnancy on her own. 鈥淚nstead of helping the patient, the doctor kept shouting at us,鈥� Patil says. 鈥淗e just wouldn鈥檛 stop, and kept asking several questions, making her extremely uncomfortable.鈥�

Patil pushed back until the doctor agreed to do a sonogram. 鈥淚t was an incomplete abortion with the fetus and pregnancy tissue still present,鈥� the doctor said, and referred Kamble to the district hospital.

But Kamble already felt traumatized by the doctor鈥檚 comments, so she was reluctant to go. Patil counseled her and explained how urgent it was for her to get surgery to remove the fetal tissue. She agreed, and the surgery was ultimately successful. 

With Patil鈥檚 help, Kamble then also got the tubectomy she wanted. 鈥淓ven this was extremely challenging as the community women kept asking me to try for another child, meaning a boy,鈥� Kamble says.

She isn鈥檛 an exception. As per India鈥檚 , more than 25% of abortions were performed by women themselves at home. Just of abortions took place in public health care facilities, while 53% took place in private hospitals, which are mostly located in urban areas.

Solving Problems Before They Happen

In 2008, accredited social health activist Suraiyya Terdale from Maharashtra鈥檚 Ganeshwadi village got pregnant. 鈥淚 didn鈥檛 want another child, but my brother told me he would adopt,鈥� she says. However, in the third month, he denied having made such an agreement. After that, her sister-in-law said the same thing, and rejected the idea of an adoption. 鈥淏y now, I was into depression,鈥� Terdale says.

In her sixth month of pregnancy, Terdale accidentally fell from a height while cleaning the house, causing severe injuries to the fetus and ongoing bleeding. She went to a doctor who warned of the risks of continuing the pregnancy, which they said could even take her life.

Terdale had no idea about India鈥檚 abortion laws or if any doctor provided such services nearby. So she reached out to a local doctor who, with the help of another doctor, performed a surgical abortion without proper medical equipment or care in place. 鈥淚 still remember how unsafe it was. I can never forget that moment,鈥� she shares.

From that instant, Terdale, who wasn鈥檛 able to complete her education beyond grade 10 due to financial constraints and patriarchal attitudes, decided to save lives by making abortion accessible. She studied to become an accredited social health activist in 2010 and went on to complete a nursing and midwifery course.

Since then, she has worked to make her community aware of pregnancy and abortion laws. However, sometimes she runs into challenges that arise from the policy itself. For instance, pregnant women with multiple daughters often have a hard time getting an abortion. 鈥淚n several cases, an investigation is done whether she has undergone a sex determination test,鈥� Terdale says.

The preference for male children was leading to a decline in India鈥檚 sex ratio. In 1981, for every 1,000 boys, only 934 girls were born. By 1991 that ratio was 1,000 to 927. To stop this, the Pre-Conception and Pre-Natal Diagnostic Techniques Act of 1994 was enacted, which made prenatal sex-detection tests a criminal offense. 

鈥淏ut, this also made it extremely difficult for women to access safe abortion,鈥� Terdale says. For instance, women like Kamble, who have two daughters, are often on the radar of public health care authorities when they seek an abortion. 鈥淢any doctors fear they will later be arrested for aborting a female child, and so they deny an abortion,鈥� Terdale says.

During such times, ASHAs talk to the health care authorities and ensure a safe abortion. Terdale鈥檚 work brings hope, especially in these times when .

鈥淚 always ensure that an abortion is done in less than six weeks. The sex of the baby can be determined after 12 weeks of pregnancy, and since they get an abortion before that, there鈥檚 no reason they are denied an abortion,鈥� she says.

However, Terdale鈥檚 work isn鈥檛 easy. She has been the subject of scorn from several medical officers and community members for helping marginalized women. During such challenging times, she thinks back to what made her do this work in the first place: She never wants anyone to go through what she had to go through. With her tremendous work traveling to villages on foot, Terdale has helped more than a hundred women access safe abortion. 鈥泪蹿 my work saves even one woman, I will happily believe that I have done something in life,鈥� she says.

Despite their life-saving work, accredited social health activists, first instituted in 2006, aren鈥檛 considered full-time workers and therefore remain overworked and underpaid. They are compensated with an honorarium and , meaning they are paid a small fee for each task completed. In Maharashtra, they average $45 to $60 a month鈥攆ar less than 鈥攁nd payments are often delayed. 

Many of these health activists have aimed to address these strenuous working conditions by unionizing. There are now a number of ASHA unions across the country. Others like Terdale are silently making abortions accessible.

鈥淲hile abortion is legal in India, there鈥檚 still a long way to make it accessible,鈥� says Netradipa Patil, who has been fighting the system to bring change. She has written letters to the health ministry and meets with senior health care authorities to raise the issue of access to legal abortion. 

Maya Patil, too, talks about why she keeps going despite the risks: 鈥淭oday, whenever we meet the women and girls we helped, they smile. That smile inspires us to bring more smiles.鈥�

The recommendation came from Amelia鈥檚 immunology team at UCSF Benioff Children鈥檚 Hospital. But there were seven other doctors who regularly worked with Amelia that needed to know about this change too. So did Amelia鈥檚 private therapist, her family therapist, and the school psychologist. Getting the new treatment also required filling out medical paperwork, obtaining coverage authorization from Amelia鈥檚 health insurance program, and sharing information with other officials at Amelia鈥檚 school.

This entire job fell to Netherland, a single mother who also has another child with complex medical needs. Altogether, Netherland estimates she spends up to 15 hours a week just coordinating her children鈥檚 care.

鈥淭here鈥檚 no one else to do it, so it鈥檚 me,鈥� said Netherland, who also works from home as a health policy consultant. 鈥淚 end up working late at night because I have to do all [the care coordination] between work hours. I would so love to have that time back to be a mom.鈥�

A new benefit called Enhanced Care Management (ECM) offered under California鈥檚 Medi-Cal program could help Netherland and other parents who are caring for children with complex physical, behavioral, and social needs. These include kids with serious medical and mental health conditions, and young people who are homeless, pregnant, in foster care, or leaving the juvenile justice system. Children and teens who qualify for the benefit are assigned a lead care manager to take charge of coordinating all of their health care and related services such as dental care, obtaining medical equipment, and access to developmental programs. The manager鈥檚 role is to keep track of the various providers, agencies, and programs a child is involved with and that often don鈥檛 communicate with each other, and to connect families to other services they may need.

However, the program鈥攚hich launched July 1鈥攈as been slow to help most families who qualify, including the Netherlands, who are still waiting to enroll.

鈥淚t kind of feels like no one was quite ready for it to launch, but it launched anyway,鈥� said Mike Odeh, senior director of health at the children鈥檚 advocacy organization Children Now. 鈥淚 want to be really optimistic about it, but it does make me wonder, if it can鈥檛 be done well, should we be doing it right now?鈥欌€�

Advocates for children with disabilities are asking California to provide more information about the new benefit and how the rollout is progressing. For the program to succeed they say the state must ensure there are enough lead care managers with sufficient training to do the complicated work of managing care for high-needs children. And they urge greater transparency and speed in data collection.

Removing Structural Barriers

As of mid-August, the California Department of Health Care Services, which oversees the new benefit, had not widely publicized its availability, and only about 3,000 of the estimated 175,000 to 292,000 California children expected to qualify for the program were enrolled. When questioned, the agency said there is no specific enrollment target right now because the agency is waiting to gauge demand for the program. Agencies participating in the benefit鈥檚 rollout, including some county health departments and Medi-Cal managed care plans, said the program is still in the early stages of development.

The program will be a part of Medi-Cal, the state鈥檚 health program for those who qualify based on income or certain health conditions, which more than a third of Californians are enrolled in. Medi-Cal managed care plans can contract with county agencies, health care providers, and community-based organizations to provide the coordination.

In an email, Health Care Services spokesman Anthony Cava said it will take time to successfully implement Enhanced Care Management and other changes to the Medi-Cal program that are part of a transformative effort known as . The department is using feedback and data to tweak these changes as they roll out, he said, noting that the process would be a 鈥渕ultiyear journey.鈥�

鈥淲e know that as the benefit rolls out, additional refinements must occur,鈥� Cava said.

Meanwhile, parents like Netherland wait.

She鈥檚 received no information from her children鈥檚 health insurance plans about the new benefit, and her children鈥檚 health providers don鈥檛 seem to be aware of it. Netherland only knows about the program because, in addition to being a mom and caregiver, she鈥檚 an advocate for children with health care needs and has served as a parent representative on state panels on the topic.

Coordinating doctor appointments and medication details is just one aspect of Netherland鈥檚 responsibilities when it comes to caring for Amelia and her older sibling, Sarah. She also spends hours driving them to specialists, including behavioral health clinicians, occupational therapists, and physical therapists. She also takes Amelia to infusion therapy at the hospital. She chases down prescriptions, meets with school staff to discuss individualized education plans, oversees tutoring, helps with homework, takes Amelia to equine therapy, and drives Sarah to a job training program.

鈥淎t the end of the day these young people who live with illnesses 鈥� they鈥檙e just kids,鈥� Netherland said. 鈥淚 feel like one of the things ECM might do is it might help remove some of the structural barriers that get in the way of young people [getting the support they need] so their families can just enjoy more time being resourced.鈥�

Cava said the state health care agency doesn鈥檛 have up-to-date information on how many children have enrolled so far. The department estimates that between 3% and 5% of the 5.8 million youth under age 21 enrolled in Medi-Cal will be eligible. Approximately 3,270 children and teens received Enhanced Care Management services in 2022 as part of an targeting adults, typically because those children were enrolled along with an older family member or were grandfathered in through a previous program, Cava said. The department reviewed all the Medi-Cal managed care plans in the state prior to the July 1 launch of the benefit for children and youth to make sure they had the right procedures in place and enough providers to offer ECM. The department concluded they were ready for the launch, he wrote.

Managed care plans are responsible for identifying eligible children and referring them to providers for service. Cava said the department has also instructed managed care plans to work on increasing awareness of the Enhanced Care Management benefit among their plan members and entities that serve those who may be eligible such as schools, medical offices, and community-based organizations.

Meanwhile, Nicole Kasabian Evans, a spokesperson for Local Health Plans of California, a statewide association representing California鈥檚 Medi-Cal managed care plans, said no one was available to speak with a reporter before the deadline. Austin Wingate, public information manager for the Alameda County Public Health Department, said officials there had not yet fully implemented the program and could not provide specific information for several more weeks. Inez Leonard, administrator of the Sacramento County California Children鈥檚 Services program, which serves children with disabilities, said her agency planned to participate in offering the benefit, but was still in the planning stages.

Fewer Children in Foster Care?

Some organizations have begun offering the benefit on a limited scale or plan to begin offering it soon. Children鈥檚 Hospital Los Angeles began enrolling children in Enhanced Care Management July 1, said spokesperson Lauren Song in an email. Craig A. Vincent-Jones, deputy director of Children鈥檚 Medical Services at the Los Angeles County Department of Public Health, said his division had applied for funding through the California Department of Health Care Services, which, if approved, would allow them to begin offering Enhanced Care Management for children and youth in early-to-mid-2024. He anticipated enrolling 1,000 children in the first year.

Vincent-Jones said the program could potentially lead to fewer children entering the foster care system by improving support for struggling families. 鈥淎 health condition can unravel a family and sometimes that鈥檚 what leads to them being in the child welfare system, so if we can find ways of preventing that, hopefully we can reduce the number of kids and families鈥� in the child welfare system.

The California Alliance of Child and Family Services is further along in the implementation process. The statewide organization represents 160 agencies that primarily serve low-income and challenged youth and their families. The Alliance launched an Enhanced Care Management provider network last October that includes almost 50 of its members. Called the Full Circle Health Network, it has already contracted with two Medi-Cal managed care plans to deliver the benefit, and as of July 24, families had been referred for care, said Camille Schraeder, the network鈥檚 executive director.

The network has developed an electronic records system that providers can use to manage patient information and referrals, and will collect standardized data on behalf of the health plans to assess program reach and quality.

鈥淚t鈥檚 a wonderful opportunity to see if we can actually effect change,鈥� Schraeder said.

Odeh with Children Now was less convinced about Enhanced Care Management鈥檚 chances of success. He said too many questions remain about who will provide the lead care coordination and whether they鈥檒l have the expertise and relationships needed to successfully do the job. In May, Children Now commissioned a series of focus groups with parents of children with chronic medical conditions. The organization found that few parents knew about the new benefit, and while some hoped it could help, others worried it might add yet another layer of complication to their child鈥檚 already complex care needs.

That鈥檚 how Netherland feels about it. Although she calls herself a 鈥渄iehard fan鈥� of the Enhanced Care Management concept, she said she鈥檚 worried she鈥檒l end up having to teach the lead care manager herself how to coordinate Amelia and Sarah鈥檚 care. So far, that鈥檚 been her experience with other case managers and similar workers assigned to help her family.

鈥淚 just have questions about how effective it鈥檚 going to be,鈥� she said. 鈥淎nd I don鈥檛 mean to be a rain-on-the-parade person, because I really hope it works.鈥�

Both Odeh and Netherland said they鈥檇 like the Department of Health Care Services to collect and make public data that shows in real time how the benefit is working. The Department is currently planning to collect data on the program quarterly. The first reports are due in November, Cava said.

And children鈥檚 advocates said the state should get input from families, including people who often face barriers to accessing health care benefits, such as people of color, those with limited English proficiency, and families impacted by the child welfare system. Odeh said he鈥檇 also like the agency to do more to build up the needed network of skilled lead care managers.

Netherland dreams of the Enhanced Care Management program being fully operational, and what that would mean for her and her children. She envisions a care manager who can schedule her children鈥檚 appointments at convenient times instead of the haphazard appointment slots they currently get; haggle with insurance when coverage for life-enhancing procedures gets denied; and convene meetings with her children鈥檚 providers so everyone is on the same page about their needs and treatment. Perhaps, if someone did this for her, Netherland could even find time to take care of herself for a change. She鈥檇 like to go back to training for marathons, which she did before she had children.

鈥淚 would love to see what it鈥檚 like to be a caregiver and not a care-wrangler,鈥� she said.

This story was produced in collaboration with the .

It was the early 1990s, and there were almost no support services in the Silicon Valley area geared toward Asian American families of children with special needs. The Wangs struggled to deal with their son鈥檚 behavior and communication challenges. They worried about his future and whether he鈥檇 ever reach his full potential. They felt stressed and alone.

鈥淢y husband was a physician, and I was an engineer,鈥� Wang said. 鈥淲e had overcome many challenges in our lives, but having a child with special needs has got to be one of the biggest challenges we have encountered.鈥�

Caring for children with disabilities鈥攚hether they have a developmental disorder like autism, a physical disability, a chronic medical condition or a combination of these鈥攊s demanding work. Without adequate support or rest, parents can end up feeling depleted and isolated. Stigma in some communities over having a child with disabilities can deepen this isolation. Some parents develop physical or mental health problems as a result. The solution, according to experts and parents who have faced these challenges themselves, is to reach out for help, prioritize self-care and connect with other families of children with special needs.

That鈥檚 what Wang did. In 1996, she was part of a group of 10 Asian American families who founded a support network for people with disabilities and their caregivers. They started by hosting gatherings where families could meet each other and discuss how to access care and resources for their loved ones. The organization eventually became a nonprofit called . Today it serves more than 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations, from after-school enrichment activities to adult day care and employment services. Parent support groups remain a flagship program, said Wang, who is now vice president of the nonprofit.

鈥淲e wanted to bring happiness to individuals with special needs and peace of mind to the families,鈥� Wang said. 鈥淎s parents we felt that if we can bond together that would be so much more powerful than trying to do everything by yourself.鈥�

The stress of caring for a child with disabilities goes beyond the caregiving itself. Navigating the complexities of the medical system, disability programs, public benefits and special education can be overwhelming, especially if a caregivers鈥� first language isn鈥檛 English. Many parents wrestle with strong emotions such as grief and may even blame themselves for their child鈥檚 diagnosis. Financial pressures mount if one spouse has to quit work to take care of the child or medical bills aren鈥檛 covered by insurance. Marriages can become strained. Siblings may act up because the child with disabilities gets so much attention.

Another challenge is stigma. Wang said about half of the families she meets struggle with this. Some keep their child with special needs at home, not even disclosing the disability to their closest family members and friends. This leads to further stress and anguish for the parents and is detrimental to the child because they don鈥檛 get the resources that can help them live a fuller life, she said.

Kelly Ko, program director for the organization鈥檚 East Bay outreach and enrichment programs said she meets families who don鈥檛 know what services are available to them or how to apply for government programs. The nonprofit has parent navigators who can assist families with this. But sometimes, even when families are approved for a service such as respite care through the San Andreas Regional Center, they can鈥檛 always access it. That鈥檚 because there aren鈥檛 enough providers, especially those that share the family鈥檚 language and culture, Ko said. Friends of Children with Special Needs, for example, has respite caregivers who speak Mandarin, Vietnamese and several other languages, but demand is so high that there are dozens of families on the waiting list.

Given this reality, support groups and events are a key resource for families, Ko said. Friends of Children with Special Needs runs online support groups in Mandarin and Cantonese twice a week, as well as monthly coffee socials, seminars and family outings.

鈥淭he family support (events) is where families feel like, 鈥極K, I鈥檓 not alone in this journey. I have resources. I have people I can share my experiences with,鈥欌€� Ko said. 鈥淭hat makes a big difference. If you feel like you鈥檙e alone and you鈥檙e just going through this journey to nowhere, it鈥檚 tough. But if you have other people and families and a support system, I think it takes a lot of that stress and burden off because they feel like they have someone to go to.鈥�

Today, Lawrence Wang is 33 years old. Thanks to the support groups and programs his mother helped create through Friends of Children with Special Needs, he is now a professional musician who plays six instruments and sings. He has performed across the Bay Area and internationally. His success inspires Anna Wang to continue helping other families access resources and programs that can help their loved ones with disabilities thrive.

鈥淭here are just so many of these types of stories waiting to be found,鈥� she said. 鈥淎fter I discovered Lawrence鈥檚 talent it became my mission to give all special needs individuals 鈥� a chance to shine in front of the community.鈥�

Tips for managing stress:

Here are some top recommendations from parents and experts we talked to about how to manage the pressures of caring for a child with special needs:

• Practice self-care. This means taking care of your own wellbeing by doing things that help you feel more rested and energized. This includes eating well, getting enough sleep, and doing restorative activities. This can include taking a few moments to breathe and be still during the day, or moving your body by going for a walk, dancing around your living room or practicing yoga.

• Find support. There are organizations across the state that offer resources and information for families caring for children with disabilities. Some, including Friends of Children with Special Needs, offer one-on-one guidance, often from parents who have raised a child with disabilities themselves. Many also run in-person and online support groups for parents, including groups in Chinese and other languages. See below for organizations in the Bay Area.

• Persevere: Help is out there, even though it can take some work to find it. 鈥淒on鈥檛 give up,鈥� Kelly Ko tells parents. 鈥淭here are many resources out there, you just need to find ones that can help. Just reach out to us if there are any questions, we鈥檒l help you through it. Just keep your spirits up and learn as much as you can so that you know how to advocate for your child.鈥�

• Shift your mindset. Susana Ruiz, a parent in San Jose caring for a child with autism, offered this recommendation for parents who feel stuck in negative thoughts about their child鈥檚 condition or their ability to care for them. She recommends trying to find positive things to focus on, such as a small improvement in your child or accomplishments, and to think about the gifts that your child brings to your family and community. For example, Ruiz said her son鈥檚 condition has made her family and others around him more accepting of differences, and that his outgoing demeanor brightens up people鈥檚 day.

Resources

You can find parent resource organizations using these directories:

1. Parent Centers. These centers offer support, services and information for families of infants, toddlers, children and youth with disabilities, from birth to age 26. There are nearly 100 Parent Training and Information Centers and Community Parent Resource Centers in the U.S. and territories. Find yours here:
2.  has a network of organizations across most of the country that can match you with a trained Support Parent who has faced similar challenges raising a child with disabilities or special health care needs. Visit to find out more.
3. The Autistic Self Advocacy Network has information and resources for parents of children with autism, including a guide to autism and therapies. Visit . Other helpful autism-related resources can be found at the () and the at .

This story was produced in collaboration with the .

But a critical program that medically fragile children depend on to get at-home care is broken, leaving families desperate. This is a medical and developmental emergency for children with disabilities, and California needs to act quickly to fix it.

California has some of the most robust programs to support kids with disabilities who are living at home. Kids who are eligible for Medi-Cal, California鈥檚 health insurance program for low-income families and people with disabilities, can access private-duty nursing care, medical day care programs, paid family care through In-Home Supportive Services, and specialty care through California Children鈥檚 Services. Private health insurance鈥攖he kind that people have through employment鈥攄oesn鈥檛 pay for long-term care. Medi-Cal is the only program that pays for the kind of ongoing care that medically fragile children need to live at home. California has a waiver program that allows these children to access Medi-Cal. The problem is, it鈥檚 full. That means children who need access to this program are languishing on a waitlist instead of getting the care they need.

This is rationing and discriminatory鈥攖he state has made a budget decision to ration the care that disabled people need to live at home. There is no moral defense for this kind of rationing. We can鈥檛 call ourselves a progressive state if medically fragile children and adults can鈥檛 get the care they need to stay out of institutions.

Waivers are a way for states to provide extra services to people who have special care needs, or to provide Medi-Cal eligibility to people who wouldn鈥檛 otherwise qualify. For disabled, medically fragile children, the Home and Community-Based Alternatives (HCBA) Waiver allows middle-class children to access Medi-Cal programs, like home nursing care.

On July 12, the state announced that the HCBA waiver was at capacity, and that any new applications would be put on a waitlist. The program has a capacity limit of 8,974 people鈥攖hat means that in a state of 40 million people, a tiny fraction (.02%) of people can access it. As of September, there were 3,233 people on the waitlist. What does it mean to be on the waitlist? It means that instead of providing access to care, the state puts your name on a list of people who need care. There are rules in place that bump medically fragile children to the top of the waitlist鈥攂ut that isn鈥檛 a real solution. The solution is that there shouldn鈥檛 be a waitlist at all.

Michelle Zapata鈥檚 15-month-old son Oliver is one of the medically fragile children who is locked out of getting the care he needs because he鈥檚 on the waitlist. Oliver was born with a complex heart defect that couldn鈥檛 be surgically corrected until he was 7 months old. Even after the surgery, the defect is not fully resolved. He still needs medications to keep his heart from working too hard. He came home from the NICU at 2 months old, with a feeding tube and a need for round-the-clock feedings and medications to manage his heart condition.

When Oliver came home from the hospital in 2022, the waiver was functional鈥攂ut he fell through the cracks. No one at the hospital told Michelle that her son qualified for private-duty nursing care or the waiver. This has been a longstanding problem with the program鈥攅ven during the years the waiver was functional, it was a tiny program that wasn鈥檛 well connected with hospital-discharge-planning teams. If the hospital had referred Oliver to the program when he left the NICU in 2022, he would have been enrolled while it was still operational. Michelle learned about the waiver through an acquaintance and applied in August of 2023, after the program stopped taking new enrollments.

Michelle works as a nurse practitioner, and her husband works for the government. They鈥檙e a middle-class family with private health insurance鈥攂ut their health insurance doesn鈥檛 pay for private-duty nursing care. That means Michelle is responsible for all of Oliver鈥檚 complex medical care.

鈥淚鈥檓 a bedside nurse 24/7 with my son, [and] on top of that I have my own job,鈥� she told me.

Without nursing help at home, Michelle has to rely on Oliver鈥檚 grandparents for help so that she can work. Oliver鈥檚 grandmother accidentally gave him too much medication one day鈥�7 mL instead of 0.7 mL鈥攂ecause the labels, syringes, and instructions all had very small print. Medication errors are easy to make, especially for people with no medical training taking care of a fragile infant. Thankfully, Oliver was OK鈥攂ut he still doesn鈥檛 have access to the professional nursing care he needs to reduce the risk of untrained family members making future errors.

If Oliver could enroll in the waiver program, he would also be able to attend Loretta鈥檚 Little Miracles, a pediatric, daytime health program where nurses take care of kids who have complex medical care needs.

The irony of the situation isn鈥檛 lost on Michelle. 鈥淚 work in health care鈥擨 work in the system that I can鈥檛 even get access to,鈥� she says.

For Oliver to qualify for Medi-Cal without the waiver, Michelle and her husband would have to quit their jobs, which would be economically disastrous for the family.

This dysfunction in the HBCA waiver program comes at an especially dangerous time for medically fragile children. During the COVID-19 public health emergency, children remained eligible for Medi-Cal even if their parents didn鈥檛 complete renewal paperwork. Then, in April 2023, California restarted Medi-Cal redeterminations, which means that families who are over the income limit to qualify without a waiver will be disenrolled. Some of these families have children who are receiving private-duty nursing care without a waiver because they qualified for Medi-Cal when family income was lower. Normally, when a child has a serious disability, they still qualify for home nursing through the HCBA waiver even if their family鈥檚 income increases. But because of the waiting list, they鈥檒l instead lose access to care. This could force parents of medically fragile children to drop out of the workforce to take care of them, or to choose unsafe care arrangements that put the child at risk of injury or death so they can keep working. Parents with no other options may have to make the devastating choice to put medically fragile children into .

This crisis doesn鈥檛 just affect medically fragile children. Adults who need nursing care at home are also on the HCBA waitlist. The HCBA waiver is a true lifespan program: It provides care for ventilator-dependent infants, toddlers who use parenteral nutrition, children who are on peritoneal dialysis pending kidney transplants, teenagers with muscular dystrophy, young adults who have been paralyzed, adults with ALS and other neurological syndromes, and elderly people with dementia.

Right now, the HCBA waiver is a zero-sum game鈥攖he people on the waitlist are waiting for people currently enrolled in the program to die in order to get care. The state is supposed to have a 鈥渢riage鈥� process for the waitlist that prioritizes some applications over others, but the rules on how that will work and when enrollments will restart haven鈥檛 been released. Disabled people who need care are drowning; we shouldn鈥檛 have to agonize over who gets a spot on the lifeboat鈥攚e can build a bigger boat.

California doesn鈥檛 put a limit on how many sick people can get care in hospitals or nursing homes. California has a similar waiver program for people with developmental disabilities called the Home and Community-Based Services for the Developmentally Disabled (HCBS-DD) Waiver, which doesn鈥檛 have a capacity limit. But for complicated budget reasons, California sets a limit on how many children and adults with medically intensive disabilities can get nursing care at home, and it鈥檚 a very low limit.

It also makes no economic sense. Warehousing disabled people in hospitals and nursing homes costs the state orders-of-magnitude more than just providing nursing care at home. When vulnerable people can鈥檛 access nursing care at home, the state spends millions on unnecessary hospitalizations.

The state has committed to providing enhanced case management and community supports for people who are at risk of institutionalization, or trying to come home from an institution. But with the HCBA waiver at capacity, California鈥檚 promise of wraparound services for the most medically complex patients is hollow.

California can fix this by immediately funding 50,000 slots for the HCBA waiver and eliminating ongoing capacity limits. This isn鈥檛 a problem that can wait until the next budget cycle for a solution. Californians who need care today can鈥檛 get it. Families are having to make gut-wrenching decisions: Do their children stay in the hospital, where they have access to medical care but not family life, or do they bring their children home without adequate support? Waiver capacity is set to increase to 10,081 slots in January of 2025 (or perhaps sooner). That鈥檚 not enough capacity to handle the people who are currently on the waitlist, or the people who will apply between now and then.

California has made an indefensible decision to ration the care that its most vulnerable residents need to live at home. The rationing needs to stop now.

This column was produced in collaboration with the .

We are physicians, and in countless private conversations with other physicians, nurses, and medical workers around the U.S., we hear whispers about people being afraid to lose their jobs if they show support for Palestinians. They have been instructed by their leadership not to say the words 鈥淕aza鈥� or 鈥済enocide鈥� in their professional roles, while they watch Israeli forces bomb hospitals, murder health care providers, and assault ICU patients. Many health care workers are discovering鈥攎uch to their surprise鈥攈ow many people in leadership roles in their institutions support , even when health care workers and hospitals are targets.

We wrote the following essay in response to JAMA鈥檚 promotion of ethical ambiguity around bombing hospitals. It was rejected for publication鈥攜et another act of institutional silencing. As Israeli media now tours the Gaza hospitals that Israel destroyed, alleging these were military targets, we see . But we do see thousands of dead patients鈥攎any of them children鈥�and hundreds of as a result of .

As physicians, we understand that our work is sacred, and the places of our care are also sacred. There is never an ethical case to bomb hospitals. There is never an ethical case for genocide. We share our response with the larger public to break the silence, to reaffirm our professional ethics, and to encourage all health care workers to speak out and rise in solidarity with our Palestinian colleagues and the communities they care for. 

NOTE: What follows is a lightly edited version of the original essay rejected for publication by JAMA.

There Is No Ethical Ambiguity About Bombing Hospitals

As physicians and health equity experts, we were disturbed to see the publication of 鈥�,鈥� by Matthew Wynia, in JAMA. Far from speaking hard truths in the face of dehumanization, violation of medical ethics, and war crimes, 奥测苍颈补鈥檚 framing is a stunning example of 鈥�,鈥� a foundational strategy to justify war and obstruct peacemaking. To engage popular support for war, nations, their militaries, and their institutions to coerce acceptance for atrocities. Ignoring history, power, and context, 奥测苍颈补鈥檚 arguments introduce ethical ambiguity where there should be none: To be clear, there is no context where bombing hospitals full of sick and injured patients and the medical staff caring for them is acceptable.

奥测苍颈补鈥檚 article was published as the world is witnessing , under Israel鈥檚 justification of unverified claims that these Days before the JAMA publication, Israeli physicians provided cover, calling for the in Gaza. The combined effect of of Gaza with airstrikes, ground warfare, and complete siege blocking food, medicine, water, and fuel since Oct. 9 has caused the collapse of Gaza鈥檚 health care system. As we write, newborns in a neonatal ward are , as power is lost for incubators due to the bombing.

These attacks on health care in Gaza are not a first for Israel. In 2021, and nine primary care centers, and destroyed a desalination plant that supplies clean water to a quarter of a million people. This past week alone, the several hospitals, killing or injuring health care workers, patients, and thousands of displaced people who had been sheltering in hospital corridors and courtyards. These targeted assaults on health care facilities, health care workers, and patients have led to the and the incapacitation of 113 health care facilities (including 20 out of 36 hospitals in Gaza that are now out of operation), and have contributed heavily to the growing casualties in Palestine, which now top 11,000 people.

for international intervention to save them and the overflow of patients they refuse to abandon. Still, Israel continues its devastating assault unimpeded by the institutions that were built to prevent such atrocities. The American Medical Association鈥檚 meeting of the House of Delegates on Nov. 11 was emblematic of medicine鈥檚 institutional response to this direct assault on our profession. The who brought the discussion of a cease-fire up for consideration. Silencing is the ultimate form of narrative control.

In this historic context, Wynia asserts that health professionals must oppose racism. In the first part of his article, he focuses our attention on antisemitism by reminding us of the Holocaust and medical professionals鈥� role in speaking out against war crimes, with which we agree. 

The article then pivots to reinforce the dominant narrative that Israelis are the victims, despite decades of that was in the same service of racial capitalism as apartheid in South Africa. Wynia appeals to our humanity by highlighting Hamas鈥� violence against Israelis while ignoring the evidence flooding the internet of mostly brown Palestinian bodies buried under rubble created through the actions of the Israeli government. 

Wynia demands that we speak out against war crimes and is quick to denounce Hamas for launching attacks from inside or near medical facilities. But then, instead of denouncing Israel for doing the same or worse, he invokes legal justifications supporting Israel鈥檚 targeting of hospitals in Gaza. Specifically, Wynia says, 鈥淚srael says it is abiding by these rules, but some international law experts believe Israel is not doing all it should to avoid harming civilians,鈥� and adds, almost as an afterthought, that 鈥渟ome believe Israel鈥檚 siege of Gaza amounts to 鈥榗ollective punishment,鈥� which is a war crime too.鈥�

Wynia then asks a series of ethical questions probing the moral grounds to bomb hospitals where enemy combatants may be hiding among injured children. The ambiguity of his response is chilling: 鈥淗ealth professionals of goodwill and equally strong commitments to human rights have differing opinions on these questions, which reflects the nature of the questions.鈥� This statement corrodes the ethical foundations of the medical profession. It also belies our profession鈥檚 historical allegiance to power.

From a medical ethics perspective, there is no circumstance in which hospitals where injured, ill people are being treated should be bombed. There is no ethical space where 鈥渞easonable people disagree鈥� about the question of killing injured children who are seeking medical care. There is no moral ambiguity to preventing . Unfortunately, . The , a subject in which most physicians have neither critical analysis nor literacy. No better case study can be found than the issue of Palestine, where institutional medicine has a demonstrated record of narrative control: .

There should be no ambiguity. From a legal perspective, and are clearly war crimes. Israel is leaning on the Rome Statute of the International Criminal Court鈥檚 legal loophole for bombing hospitals, schools, and other places where the sick and wounded are gathered by stating that these locations are protected, 鈥�.鈥� Fascist armies have used this logic before, which led to the Geneva Convention鈥檚 articles protecting health care in times of war in the first place. In 1935, , claiming they were housing militants. In Mussolini鈥檚 world, anything that was not in the interests of Italy鈥檚 fascist regime was considered a .

This line of reasoning creates a narrative space where the most sacred aspects of our work as physicians鈥�caring for the sick and vulnerable, regardless of identity鈥�is left open to the kinds of attacks we are witnessing in Gaza and the simultaneous attacks on medical ethics exemplified in . Opening the door to bombing hospitals, killing injured and hospitalized children, and framing it as morally and ethically ambiguous is a dangerous position for JAMA, putting the journal dangerously out of step with the world and the moral code at the heart of our profession.

But that perception was challenged when my son, James, was born with medically intensive disabilities. I wanted my son to have a positive relationship with food, even though he is fed through a tube. To do that, I had to tackle my own emotional baggage about what it means to feed my family.

James鈥� relationship with food is complicated. He was tube fed for most of his early life, first with formula, and later with food processed in a blender. Now, at age 12, he gets about half of his calories from food and relies on Pediasure鈥攙itamin-fortified formula鈥攖o get enough calories. For years, I felt guilty about the Pediasure. Every can made me feel like I was failing to give him 鈥渞eal鈥� food. It took me years to accept that food doesn鈥檛 have a moral value. Feeding your child easily digestible food so they get adequate nutrition isn鈥檛 a weakness. Food doesn鈥檛 have to be a source of joy. It can simply be a source of nourishment.

This isn鈥檛 so much a story about how my son learned to eat as it is a story about how I came to terms with how he eats. The fact that my son hated food from a young age because his disabilities made the act of eating painful and scary made every mealtime hard. And for the longest time, I blamed myself.

Guilt in the NICU

In my rational mind, I know that I鈥檓 a good mother. But maternal guilt鈥攅specially around dietary choices鈥攊s common. My guilt around feeding started when my son was in the neonatal intensive care unit (NICU). I wanted to breastfeed. I鈥檇 memorized the adage 鈥渂reast is best,鈥� especially for the tiniest and sickest babies. I had breastfed my older child and easily transitioned to pumping when I went back to work. But the stress of pumping for a NICU baby was overwhelming. The hospital where my son spent most of his first year was a three-hour drive from our home. When I arrived at the hospital, I was desperate to see him, but I had to go to the pumping room instead. I couldn鈥檛 hold my own baby, and he couldn鈥檛 cry because of the tubes down his throat. So I played YouTube videos of babies crying to try and trigger the letdown reflex. It didn鈥檛 work. I could never release enough milk.

In my rational mind, I knew I wasn鈥檛 failing my son. All his medical needs were being met, and he was growing. But the decision to stop pumping and feed my son formula was hard. I felt so much pressure to keep pumping. It didn鈥檛 help that my son rejected every normal formula and had to be fed expensive specialty formula directly into his small intestines because of near-constant vomiting.

A Tube-Feeding Odyssey

During the early years, tube feeding solved a problem. My son was tiny and sick. To get better, he had to grow. To do that, he needed calories.

But tube feeding also created problems. My son had severe oral aversion鈥攁nything that touched his mouth triggered his gag reflex. He wouldn鈥檛 take a bottle or a pacifier or even put his fingers in his mouth. That meant he missed out on forming the neural-motor connections that pave the way for eating and speaking.

As a pathological overachiever, I didn鈥檛 want to just tube feed my child. I wanted to be the best at tube feeding. As we struggled to find a formula that worked, my son鈥檚 doctor suggested a blended-food diet but didn鈥檛 provide much guidance on how to do it. I started with baby food, then slowly started blending normal food and putting it through the tube. Through trial and error, I figured out the best, most calorically dense and nutritionally complete blended diet. The whole family worked to blend a month鈥檚 worth of food, made from bananas, carrots, spinach, eggs, and flax seed.

All the work I put into blending food was important for my son鈥檚 health鈥攁nd my mental health. Having normal food in his stomach solved James鈥� constant vomiting and made the process of feeding him somewhat more normal. At a meal, everyone else would eat food from a plate and he would have blended food through the tube to his stomach. For me, making blended food instead of just opening a can and pouring it into the feeding pump made me feel like I was doing my job as a mom.

Learning to Eat

Swallowing involves about 50 tiny muscles in the mouth, tongue, and throat. Dysphagia is when something goes wrong in that process. Treating dysphagia in a medically fragile baby who鈥檚 never eaten and can鈥檛 understand detailed instructions is incredibly difficult.

There are formal therapy programs that are supposed to help children like my son learn to eat. But there aren鈥檛 enough speech-language pathologists and occupational therapists who specialize in children, especially those with special health care needs. Our local hospital had feeding therapists with special training in medically complex children. But their program had a years-long waitlist. Feeding therapy teaches children to overcome their aversion to tastes and textures by breaking down the process of chewing and swallowing food into small steps the child can practice.

There was another barrier to getting feeding therapy. My son needed to pass a swallow study (a medical test to make sure the things he swallowed went to his stomach and not his lungs). But he couldn鈥檛 pass a swallow study because he didn鈥檛 know how to swallow. The system wasn鈥檛 set up to work, so it fell to me to fix it.

To get my son to eat, I had to help him overcome his oral aversion. To do that, I tried to present him with different kinds of food to eat consistently and without pressure. I did OK with consistency, but I put pressure both on him and on myself. Our parent-child dynamic worked with mobility and speech because he wanted to move and communicate. The dynamic fell apart with food because he didn鈥檛 want to eat. The textures, tastes, and physical skills needed were overwhelming for him, and so was the pressure I put on him.

In the end, it was Pediasure that started my son鈥檚 journey toward enjoying food. One day, he discovered the taste of Pediasure from chewing a hole in his feeding pump line when he was teething. He became willing to eat vanilla Pediasure. He didn鈥檛 have the oral skills to suck on a bottle or drink from a cup, but the feeding pump could deliver a few drops of formula into his mouth at a time in a way that didn鈥檛 scare him.

Breakthroughs

As he grew, James alternated between hating food and wanting to participate in the thing everybody else was doing. He was particularly obsessed with frozen yogurt shops. He would be so excited to pull the yogurt handle and scoop the toppings that he would promise to eat it. Then he would get his perfect, beautiful frozen yogurt and cry. It was heartbreaking. Until one day, at age 4, he took his first bite of frozen yogurt. It was a single bite, and he didn鈥檛 like it, but it was a really big deal.

I pinned all my hopes on an inpatient feeding program at Children鈥檚 Hospital of Orange County, a five-hour drive from where we live in California鈥檚 Central Valley. The program is the only one of its kind in California and is created specifically for medically complex children who didn鈥檛 learn to eat as babies. My son went through the program the summer after kindergarten. Usually, kids stay with their parent in a special room that is set up to feel more like home than a hospital, but my son had to sleep in the ICU because of his ventilator. Those were the hardest three weeks of my life because it was all about food and it was all out of my control. In reality, it had always been out of my control.

The inpatient program worked enough to be considered a success. When my son entered the program he could only eat a single graham cracker. He left the program able to eat a white-bread-and-American-cheese sandwich with the crusts cut off. It took him about half an hour to do that. However, eating food was physically exhausting for the muscles in his jaws and he still needed to chug a Pediasure for concentrated calories.

I still felt like a failure. Now, instead of nutritionally and calorically perfect blended food in his tube, he was living on Pediasure and graham crackers.听He knew how to eat, but it was a Pyrrhic victory because now every mealtime was a battle of wills. He was willing to eat food, but he resented it and physically struggled with each bite. Meanwhile I was genuinely afraid that he wasn鈥檛 consuming enough calories to live. That fear wasn鈥檛 in my head. Medically fragile kids are frequently underweight, because being sick all the time burns a ton of calories. At every medical appointment, James was weighed and I was tasked with figuring out a way for him to eat more and gain more weight. 听

It turned out that vegetarian food was key to getting him to eat more.  Meat and other protein-dense foods are harder to chew and swallow than starchy foods. Vegetarian entr茅es like beans and tofu were easier for him to manage, with the side benefit of being healthy for the rest of the family. He started to enjoy trips to the farmers market, and could eat a few bites of whatever he chooses (and wash it down with Pediasure).

I wish I could say there was something I did that made him turn the corner, but I think it was just time. After a couple years of seeing eating as a chore, James got good enough at it to start actually enjoying some foods. That was always my goal: I didn鈥檛 want him to just eat food, I wanted him to love food.

The process was a learning experience for me. I had to relax and let him progress at his own pace. I had to understand that even when he loves a new food, he still needs to rely on 鈥渟afe鈥� and easy foods for most of his calories. Plain communication also helped. If James doesn鈥檛 like a lasagna I鈥檝e made, for example, he鈥檒l tell me.

These days, my son doesn鈥檛 love all the holiday foods, but he does eat the things he likes. He skips the Halloween candy because it has too many weird textures, but he enjoys trick-or-treating. For Thanksgiving he鈥檒l eat a few bites of anything as long as it鈥檚 covered in gravy. During Christmas season, there is one dessert he adores: vanilla meringue cookies that are soft enough to melt in your mouth. His palate may not be expansive, but for me the most important thing is that he鈥檚 finally able to find joy in food. That鈥檚 all I ever wanted for him.

This story was produced in collaboration with the .

We are afraid and yet we are obsessed, scaring ourselves with zombie movies, but the real undead/unalive, those of us who hang in a certain balance, are largely ignored. We elicit pity, guilt, and discomfort. Our stories are told for us, on our behalf. The half-dead, the near-dead, the undead: Our presence can be frightening. But say, where there is fear there is power. There is power in what we fear; there is a power we wield when we are feared. It is a time in the world where these sayings, these stories, and these worldviews must be shared widely again.

I developed ovarian cancer in my late 30s. kills the vast majority of its victims; there are few survivors. This is largely because there is , and it is almost always . Its symptoms are so generic (bloating, fatigue) that any tired woman would not notice them, and most poor and working-class women would simply endure them. 

In January 2021, while our world endured the isolation of COVID-19, I received a quick spiral of diagnoses that resulted in three cancer-related surgeries in less than three months. The winter of 2020 started with relief: Many of us had worked hard (and relatively well) together to defeat Trump. The previous four years of his presidency had brought me back to my organizing spirit and, while my peers and I were overworked and worn out, I felt some measure of calm when he was voted out.听

Alongside the battles of 2020, a small spirit had been warmly pestering me, like a child asking to be born. She brought me messages, bodily communiqu茅s that doctors call 鈥渟ymptoms.鈥� These resulted in a diagnosis of ovarian cancer, and one that disproportionately impacts , , , and older women. It feeds on those who can鈥檛 go to a doctor and those who convince ourselves we do not need to.

It is a cancer that lives and grows far inside the body. In my case, it came to me after years of terribly painful periods, with days of cramps and heavy bleeding. Continuous travel for work meant I rarely went to a doctor; I told myself that I ate alright and exercised. I had visited a gynecologist a few times, but they had not figured out what was wrong and only suggested birth control pills, which I politely would refuse. In retrospect, practically bleeding out and through my jeans in an airplane bathroom鈥攕everal times over the years鈥攚as not normal. But the machine of overwork often convinces us our pain is normal, setting our standards of suffering to autopilot, set to run until we just fall down one day.

I have had six reproductive organs removed: each one died and went into the earth before the rest of my body. This was a sacrifice I made at men鈥檚 altar of blood and steel and science. A sacrifice I made to keep living in this wondrous body, to keep enjoying her purpose and pleasures.                                     

The (Goddesses and grandmother spirits of Central and Eastern Europe) and other spiritual forces in my life will, in time, tell me if this sacrifice was enough to save my life, but for now, it seems yes. I am told my diagnosis was quite unusual, that I was quite young for it. It has not served me to think of it this way. I refuse the idea it is unique鈥攅specially in the great cycle of loss and grief we all live in and through now. Instead, I felt it connecting me鈥攁s if on a threshold鈥攖o an array of spirits and humans. No saccharine optimism to be found, but such aliveness poured in and through me that I had moments of feeling dazzled.                                   

When I was in treatment, I felt I was nearly being killed to save my life. At that time, I searched the internet for books written by ovarian cancer survivors. There were few. I discovered why when I went to online ovarian cancer support groups: Everyone was slowly or quickly dying in those groups except me. Most of those suffering from this cancer likely simply died before they could consider writing anything.

Then I searched for any books by women who had any kind of cancer; I found some. Many felt like sugary, optimistic fairy tales bathed in Pepto-Bismol pink. They were also overwhelmingly the stories of Christian, wealthy, white, straight women. There were also many films, books, and articles written by people who loved people with cancer and who had lost people to cancer: lovers, parents, and siblings. The lives of cancer victims and survivors impact those around us deeply, and others are often moved to speak for us. This has advantages and disadvantages, of course. We also must reserve the space and support to speak for ourselves.

This made the few books I found that were completely different all the more precious鈥攎ost notably, by Audre Lorde, which stands alone. She remains the only woman writer who lived with cancer I have ever read who wrote with raw truth about what it meant for her body, her sexuality, her mind, her relationships, and her children to suffer like this. She was taken from us far too soon. 

As I floated in my bed, during chemotherapy, high on opioids, I deeply wanted to read (when I could read) stories. Stories I could relate to: about the raw, the eternal, the visceral, the pessimistic, the women, the queers, the dead who talk to us when we are near their realm.

I didn鈥檛 want to hear the stories of praying to a God that was not mine. I was hungry to read about women grappling with cancer who were divorced, single moms, who came鈥攁s I did鈥攆rom immigrant families, who had family far away, who were suffering through cancer on land that was not theirs and would never be. I did not feel the need to share every experience of these women; I just wanted to hear the pushed-out stories at the margins, which are really the stories of most of us. will deal with cancer at some point in their lives, and each year there are more cancer cases among . 

It seems to me some of us must chronicle the messy truths of it so that more of us can care for each other better in a time of profound alienation and isolation. Few have written about what it is to suffer cancer surgeries and treatment during a pandemic. This experience only underscored and deepened the solitude intrinsic to all of us who come close to death, all of us who must build a new life.

When I was a child, I was told one story about the history of the plant hemlock: one of the highest honors told in the stories of the witch burnings, was when one witch would smuggle hemlock to her tortured and imprisoned sisters. The ultimate sign of respect: allowing each to choose how much pain she wanted to take before ending her own life. At the heart of Slavic belief鈥攊ndigenous to Eastern Europe and part of my heritage鈥攁re the ideas of immanence: that all things are alive and sacred. The love and the wrath of the earth are poured out upon us. Our deaths, our near deaths, our salvation, and our new lives are all catalysts for transformation in which we have some choice, some power, even when we feel we do not. There is no end, no beginning, and there never was.

I made choices in my near death. I made choices in my new life. My reasons were my own and would be different from anyone else. I owe a great deal to the legacy of feminist literature, particularly chronicling鈥攖he idea that it is inherently political and liberatory to chronicle painstakingly, in natural and raw time, the experiences of those who are often erased and silenced. 鈥淲hen we speak,鈥� Lorde says, 鈥渨e are afraid our words will not be heard or welcomed, but when we are silent we are still afraid, so it is better to speak remembering we were never meant to survive.鈥�

I can only thank my ancestors here, and again and again eight times a year, for how they stayed close on this journey, ready for me if I were to cross over to their side. So many women in my lineage have suffered sorrow and regret silently; they urge me to speak. The honor of my life is to give voice in places they never could.               

These words are for all of us who know in our bones or seek a different way of being alive, nearing death, suffering, and even dying. They are for all of us who love someone going through these cycles. They are for all of us who want to reach beyond the numbing gauze of our times to know what suffering means, to be fully alive again, in order to be whole, again and always.

This excerpt from听听by Caitlin Breedlove (AK Press, 2024) appears by permission of the publisher.

As her parents see it, caring for Claire is part of the job of being parents and something they do gladly, just as they care for her older brother, 7-year-old Xavier. Claire was born, apparently healthy, in December 2021 in Los Angeles, where the family still lives. Her parents never anticipated that four months later, after having brain swelling and open-heart surgery, their infant would be diagnosed with a condition so rare that only 20 people have been known to have it. Or that it would mean Claire鈥檚 mother, Vivian Vasquez, would become Claire鈥檚 full-time caregiver, and lose her job as a high school principal in the process, that the family would burn through their savings and need public assistance for health care, that they鈥檇 have to battle endless insurance program denials and paperwork to get care that doctors said Claire needed. Perhaps most shocking was that the health and social support system that鈥檚 supposed to help families like Claire鈥檚 would, instead, make it even more stressful to care for a child with intensive medical needs.

鈥淲hen you are trying to care for a human baby and all you find are walls 鈥� it鈥檚 this stone-cold feeling,鈥� Vasquez says. 鈥淗ow do I find the help I need? There鈥檚 no one to direct you.鈥�

If Vasquez, who holds two master鈥檚 degrees, has struggled to figure out how to get health coverage and care for Claire, what happens to other, less-resourced families? California has multiple programs that provide support to children with complex medical needs and disabilities. Among them are Medi-Cal, the state鈥檚 safety-net health insurance program; a waiver program that allows kids with disabilities to qualify for Medi-Cal even if their parents earn too much; California Children鈥檚 Services, which provides treatment for children with certain medical conditions; In Home Supportive Services, which pays for caregiving of people with disabilities at home; and California鈥檚 Regional Center system, which serves kids and adults with developmental delays.

But accessing and making use of these programs is a minefield for many families. They often receive little guidance on how to apply for programs, must navigate complex paperwork and bureaucratic requirements, wait weeks or months to find out if they鈥檙e approved for a service, and鈥攖hen, even if they do qualify鈥攕truggle to find providers that can offer the sanctioned care. The result is that children often don鈥檛 receive the care they need鈥攚hich can lead to a need for even more care as they get older and increases the risk of the child requiring expensive visits to hospital emergency rooms. Some parents give up on trying to get services altogether and become emotionally or financially distressed. It鈥檚 common for at least one parent to have to stay home to care for the child, affecting the family鈥檚 income.

鈥淚 Can See Where People Would Give Up鈥�

Claire is a vivacious child, with attentive brown eyes and the round cheeks of a toddler. Although she can鈥檛 talk, she babbles constantly, and flashes smiles at strangers and family members alike.

Born with a rare genetic condition that affects her heart, lungs, and brain function, Claire鈥檚 survival depends on a strict routine of alternating feeding, breathing, and medication treatments. These continue from the moment she wakes up until her bedtime around 9:30 p.m., when she sleeps attached to an oxygen machine.

An hour after Hernandez has given Claire her first supplements every morning, Vasquez steps into the little girl鈥檚 nursery.

鈥淗i, Claire bear,鈥� Vasquez says. 鈥淕ood morning, little honeybun.鈥�

If she鈥檚 not too tired, the toddler stretches and greets her mom with a big smile. Vasquez props Claire up in bed or on the couch in the living room. She turns on The Wiggles鈥攁 children鈥檚 music show鈥攐n a tablet and uses a syringe to give her daughter the first of six meals of the day through her feeding tube. Claire likes to move along to the music and point and flex her toes when her favorite ballerina song comes on.

After making Xavier breakfast and driving him to school, Vasquez continues Claire鈥檚 feeding and treatment routine for the rest of the day and works with her on exercises to help physical and mental development, such as standing her against the wall, holding her head up, and putting toys in front of her. She balances this with taking Xavier to kung fu or piano lessons in the afternoon and helping him with homework.

But that鈥檚 just part of her responsibilities.

The stack of manila folders on the kitchen table is another story. Inside are papers related to health insurance programs, medical services, and social assistance Vasquez has sought to try to get Claire鈥檚 needs met and support her family financially.

鈥淓verywhere I go, there鈥檚 something else to apply for,鈥� Vasquez says, estimating that she spends two hours a day calling government agencies, health insurance officials, and doctor鈥檚 offices, often with little success. 鈥�I know the help is out there, it鈥檚 just hard to access it. 鈥� I can see where people would give up.鈥�

鈥淲e have a very complex health care system,鈥� says Apple Sepulveda, an occupational therapist with the in Los Angeles, who specializes in working with young children who have medically complex conditions, and is helping to teach Claire how to swallow. She says she鈥檚 constantly meeting parents like Vasquez who are struggling to get the support their child is entitled to, while trying to cope with the upheaval of caring for a child with intensive health needs. Because they don鈥檛 get enough help, parents can become overwhelmed or depressed, she says.

鈥淣avigating all these services and appointments is time-consuming for families,鈥� Sepulveda says. 鈥淲e have to recognize that a lot of these parents are so overwhelmed because they bring their child home from the hospital or the NICU and they become their nurse, their care navigators, their advocates, their respiratory therapists. So, they wear a lot of hats.鈥�

The Impact of Delays

Claire had open-heart surgery at 4 months old and shortly after was diagnosed with 鈥渃hromosome deletion 4q21q22.鈥� The condition impairs the body鈥檚 organs, delays growth, and affects feeding, speech, and mobility. Vasquez remembers how sad she felt when the doctors sat her and Hernandez down in a hospital office and told them that Claire might never walk or learn to speak. Vasquez鈥檚 dreams of taking her daughter to dance class and teaching her to read shattered. She wondered if Claire would ever learn to run, if she鈥檇 ever hold a balloon.

The doctors said Claire needed regular care from multiple specialists, occupational and speech therapy, tube feedings with specialized food, and oxygen equipment to help her breathe. 

She also needed more health insurance.

At the time, Vasquez was principal of an elementary school in Pomona, the culmination of a long career of teaching, founding a bilingual education program, and earning two bachelor鈥檚 and two master鈥檚 degrees. She had private health insurance for her family through her employer. But that insurance wasn鈥檛 enough to cover all the complex care that Claire required. Vasquez also needed a home nurse to care for Claire during the day while she worked. Although she and her husband made enough to live comfortably, these expenses were more than the family could afford. They also had a mortgage to pay, student loans, and two car loans, and were helping Vasquez鈥檚 elderly parents with utility bills. 

At first, Vasquez thought she had it figured out. A hospital social worker recommended she apply for the Medi-Cal and Home and Community-Base Alternatives (HCBA) waiver programs, which would cover Claire鈥檚 medical care. She also learned that, once Claire had Medi-Cal, she could apply for the state program that pays for a home nurse.

But it took months to get approved. First, Vasquez applied for standard Medi-Cal in June 2022, but was denied because her family鈥檚 income was too high. Then she applied for the waiver program, the other avenue to Medi-Cal coverage, which required gathering mountains of evidence for Claire鈥檚 condition. She waited three months for that to be approved. Then, upon receiving the approval, Vasquez had to reapply for Medi-Cal to get actual health coverage, which took effect  in January 2023. Because of the delay in getting insurance, during the eight-month process to obtain Medi-Cal Claire hadn鈥檛 seen most of the specialists she was entitled to see under , which requires that children enrolled in the safety-net health insurance program receive all medically necessary treatment.

Eight months is a long time when you are a toddler. It amounted to nearly half of Claire鈥檚 life that she had gone without the health care doctors said she needed. Early intervention is critically important for many children鈥檚 health and developmental conditions, increasing the likelihood that treatment will work.

Only when Claire had Medi-Cal could Vasquez apply for the home nurse program. Again, Vasquez waited about nine months for the application to be finalized. Eventually, she called the program鈥檚 customer service line in frustration, dialed through multiple prompts and waited two hours for someone to answer. She was told a form she had handed in was missing. It wasn鈥檛 until September that she received the first home nursing payment.

By that time, Vasquez had been fired from her job for missing too much work. She couldn鈥檛 juggle the demands of running a school with caring for Claire without the help of a nurse. With the loss of employment, Vasquez also lost the family鈥檚 main source of income, and her own and Xavier鈥檚 health insurance. She and Hernandez, whose job doesn鈥檛 offer family health coverage, began burning through their savings to stay afloat.

鈥淚鈥檝e never felt the amount of stress in my life as I have these last two years,鈥� Vasquez says. 鈥淚t just all crumbled down 鈥� I鈥檝e had to reprioritize, readjust our lives.鈥�

Ironically, Vasquez鈥檚 newly precarious financial situation made her and Xavier eligible for Medi-Cal. That application process took another three months, forcing Vasquez to burn through even more savings to pay for out-of-pocket medical bills for her and Xavier while she waited for their Medi-Cal cards.

鈥淲e didn鈥檛 qualify for Medi-Cal at first because we earned too much,鈥� she noted. 鈥淚t鈥檚 like you have to be reduced to low-income to get the help you need.鈥�

All in all, the process of getting Claire the care she is entitled to鈥攁nd needs鈥攁nd health coverage for the rest of the family has taken more than a year and a half. And it鈥檚 not over yet. Vasquez is still trying to secure appointments with a developmental neurologist and speech therapist for Claire, and is trying to figure out how to apply for California Children Services, which she hopes will help cover some of the treatment.

鈥淎 Cloud Above My Head鈥�

The Vasquez family鈥檚 worries didn鈥檛 end when they were finally enrolled in Medi-Cal and In Home Supportive Services, the home nursing program. Vasquez is compensated by Supportive Services for some of her caregiving hours, but at $17 an hour it鈥檚 only about half of her previous salary, and barely above minimum wage. Meanwhile, with Claire enrolled in Medi-Cal under the Home and Community-Based Alternatives waiver, Vasquez has struggled to find new specialists that take the insurance and don鈥檛 have a long waiting list.

Almost a year since having Medi-Cal, Vasquez is still working to get Claire all the doctor鈥檚 appointments and therapies she鈥檚 been told she needs. Provider shortages, particularly among those that accept Medi-Cal, make finding pediatric specialists difficult. And the doctors Vasquez used under her private plan don鈥檛 take Medi-Cal. Many doctors don鈥檛 accept Medi-Cal because it offers them a lower pay rate than private insurance, resulting in a tiered health care system that further exacerbates health disparities for Californians.  

Claire鈥檚 Medi-Cal plan sent referrals to at least 11 specialists, but most of them 飞别谤别苍鈥檛 taking appointments for months and still had to get final approval from Medi-Cal before they could see Claire. Vasquez had to pester them to try to ensure the referrals and approvals went through. This meant waiting months to see a primary-care physician, a pulmonologist, gastroenterologist, cardiologist, and other specialists. She鈥檚 still waiting for calls back for a developmental neurologist.

She鈥檚 also spent months fighting to get occupational and physical therapy, and now speech therapy for Claire. Vasquez applied for these services through the Eastern Los Angeles Regional Center in June 2022, but says she鈥檚 faced an uphill battle getting the therapies fully covered. She鈥檚 had to put in multiple requests to prove she couldn鈥檛 get coverage through her old health plan. Claire now has occupational and physical therapy twice a week, but Vasquez is frustrated that it took so long to get it. The Regional Center still hasn鈥檛 approved speech therapy, even though multiple providers have said Claire needs it. Vasquez is worried that the difficulty in getting these therapies and speech intervention has put her daughter鈥檚 development further behind.

To add to her to-do list, Vasquez now has to reapply for Claire鈥檚 Medi-Cal and HCBA waiver, because California has restarted its renewal process for health benefits after ending a three-year pause during the pandemic.

鈥淲hen I think of the system, I feel like it鈥檚 just me and this cloud above my head with all these acronyms and bureaucracies and buildings and I鈥檓 like, 鈥極K, which of them am I reaching for today?鈥欌€� she says. 鈥淚鈥檝e learned to take it one day at a time.鈥�

Sepulveda says California needs to make it easier for families like Vasquez to get services. A new service under Medi-Cal called Enhanced Care Management that would provide care coordination for children like Claire could help, she says, but the benefit has been and many people are skeptical it will work. Vasquez says what she really needs is someone to walk through the system with her and provide ongoing support, rather than leaving her to figure everything out for herself. She wants it to be easy to call and get help, and to feel that those who answer the phone recognize her and her daughter as human beings, not just numbers and checkboxes.

Claire, meanwhile, is growing and gaining new skills, on her own timetable. She babbles, rolls over, and can pick up small items with her fingers like her pacifier and crackers. She recognizes people and smiles. The biggest smiles are for Vasquez, Hernandez, and Xavier.

But Claire doesn鈥檛 yet sit unassisted, crawl, or walk, as typically developing 3-year-olds would, and she hasn鈥檛 learned to speak.

Vasquez is holding out hope that Claire will eventually learn to do all these things. She dreams of using her education skills to one day teach her daughter to read. For now, she celebrates each small achievement, marveling at Claire鈥檚 determination.

鈥淣o one ever thinks they鈥檙e going to have a child with a condition,鈥� Vasquez says. 鈥淚t really does shatter hopes, but in a way it鈥檚 actually made me stronger. She鈥檚 taught me so much about what real courage is and what real beauty is. 鈥�

Sometimes, Vasquez and Hernandez get out the photo of Claire after her heart surgery at 4 months old, her tiny body covered in tape and stitches, her little face intent on breathing, on staying alive. She has done it. She is still doing it.

And her parents are helping her every step of the way.

This story was produced in collaboration with the .

Care Coordination

Health care organizations such as hospitals, clinics, and managed care plans need to provide families of children with intensive medical needs with comprehensive care coordination that includes not just medical care but also social services, says Mona Patel, a pediatrician and chief integrated delivery systems officer at Children鈥檚 Hospital Los Angeles. That means going beyond just providing a list of resources and leaving caregivers to figure out the next steps. Families need personalized and well-organized support to connect them with resources in their community and help them navigate the challenges that come up.

Anna Leach-Proffer, managing attorney with Disability Rights California, says many programs such as Regional Centers and California Children鈥檚 Services do provide case managers for families of children with special health care needs. But this often results in families having multiple case managers who only work within one program and don鈥檛 coordinate among themselves. What鈥檚 needed is a super-coordinator who can oversee all aspects of a child鈥檚 care across all the programs.

A new benefit launched in July called Enhanced Care Management (ECM) aims to provide this for low-income children enrolled in Medi-Cal who have complex medical and social needs. However, the benefit has been slow to roll out and there is , including fears that it will simply add another layer of complication to the health care system for families.

Children鈥檚 Hospital Los Angeles is one of a few organizations already offering the benefit at scale. The hospital has hired 10 community health workers and provided ECM navigation to almost 300 families of medically fragile children since July. The workers meet with the families at clinics or in the community and walk them through obtaining the health and social services support they need, often going with them in-person to apply. This could range from getting a mental health appointment to an application for subsidized housing or for reduced-cost electricity. 

The system isn鈥檛 perfect鈥攖he hospital is contracting with several managed care plans that all have different administrative requirements, Patel says. She said it would help if the state Department of Health Care Services would standardize requirements across health plans. This needs to include standards designed for children, not just the adult population.

Nevertheless, families and medical providers working with the hospital鈥檚 program have so far offered positive feedback, she says.

鈥淚 think it could become the way of the future if it becomes much more streamlined,鈥� Patel said, adding that the program could be 鈥渁 wonderful opportunity to deliver the care and the depth of care that our patients and families deserve, especially in our vulnerable communities.鈥�

Elizabeth Zirker, senior counsel for Disability Rights California, says managed care plans must also pay ECM providers adequately to ensure enough of them want to do the work. Another challenge with the care program is that it鈥檚 not available to children who qualify for Medi-Cal through a waiver program that exempts them from income-eligibility limits. It would make sense to change if those children aren鈥檛 receiving specific ECM-type services elsewhere, such as help transitioning out of an institution and coordination and referral to community and social supports, she says.

Closed Referral Loops

In 2025, Medi-Cal Managed Care Plans will be required to make sure that when members鈥攊ncluding children and their families鈥攁re referred to a health or social service provider, someone follows up to make sure that referral went through. This 鈥渃losed-loop referral鈥� requirement encompasses referrals to ECM coordinators, local community organizations, dentists, regional centers, nutrition programs, and county mental health departments, among others.

Mike Odeh with the organization Children Now says, like ECM, this policy could really help families caring for children with disabilities, if done right. To ensure this, the state must fully detail what a closed-loop referral looks like, such as a maximum time a referral should take to complete and how they should be done. This is especially critical for young children for whom the speed of early intervention can have lifelong consequences.

鈥淭here needs to be training and resources (for providers) to make these systems work,鈥� Odeh says. 鈥淎t the end of the day it can鈥檛 be just giving the family a phone number and saying, 鈥楪ood luck, hope it works for you.鈥欌€�

Remove Limits on HCBA Waiver

The Home and Community-Based Alternatives (HCBA) waiver provides children and adults with disabilities who would otherwise be institutionalized to receive the services they need to live at home, including home nursing care. But the program has been full since July, leaving thousands of people on a waitlist. Disability rights advocates and members of Congress have to increase the number of waiver slots. The state did recently add an additional 7,200 slots over the next four years and implemented 鈥渢riage鈥� protocols to prioritize medically fragile children in the intake process, after a and other coverage of the issue. However, Zirker says the cap for medically fragile children should be lifted altogether.

Automatic Medi-Cal Reimbursement, Better Coordination With Other Plans

Some children with disabilities get health coverage from Medi-Cal and a statewide program called California Children鈥檚 Services (CCS). These programs don鈥檛 always agree on which entity should cover each service, and families get caught in the middle. If CCS denies a claim, Medi-Cal won鈥檛 pick it up until the family can prove it has exhausted the appeals process, said Leach-Proffer at Disability Rights California. That鈥檚 stressful and time consuming for families.

Leach-Proffer would like to see Medi-Cal coordinate with CCS to pay for denied claims, without families having to jump through hoops. In fact, Zirker believes that Medi-Cal should automatically pay all claims for its members so services can be provided in a timely fashion, and then figure out later if another program is responsible.

鈥淲hy should a medically fragile baby be placed at risk because these systems can鈥檛 communicate and are so lumbering?鈥� she said.

Enforce Existing Regulations

Federal law requires Medi-Cal to for children under age 21 who are enrolled in the program. These services include dental, vision, hearing, home nursing, nutrition, and mental health services. But some California counties are not authorizing services according to these standards, said Nicholas Levenhagen, litigation counsel with Disability Rights California. He and Leach-Proffer said the Department of Health Care Services needs to provide better oversight of authorization processes among counties and Medi-Cal鈥搈anaged care plans.

Enroll All Children in Medi-Cal

In October, the American Academy of Pediatrics鈥攖he largest professional association of pediatricians in the United States鈥攑roposed streamlining health care coverage for all children by automatically enrolling all newborns in a single, government-funded health insurance program. In California, this program would be Medi-Cal (a program that draws funding from two federal programs called Medicaid and the Children鈥檚 Health Insurance Program). The Academy proposed allowing all children to remain eligible for the program until they turn 26, regardless of income. Parents could choose to opt their child out of the program if they have another source of health insurance coverage. 

The Academy also proposed increasing federal funding to states to pay for this and increasing provider minimum reimbursement rates to make sure Medicaid providers are paid on par with Medicare鈥攖he health insurance program for people 65 and older.

鈥淭he existing patchwork of state Medicaid plans work well for some, but not all children, and leads to inequities and obstacles for families to obtain and keep their medical coverage,鈥� said Jennifer Kusma, a co-author of proposal, in a statement. 鈥淯ltimately, all of society benefits when children and families are thriving and able to get their routine, preventive and urgent health care needs addressed.鈥�

This story was produced in collaboration with the .

Even when Williams can find a specialist who is willing to see her son and accepts his insurance, there鈥檚 a long wait for appointments. At times that鈥檚 meant Marc has gone without medication to manage his seizures or been unable to see a speech therapist to help him learn to talk. When he was 2, he had to wait two years to see the various specialists needed to approve the removal of his breathing tube.

鈥淎lways they kept postponing it or it was hard to get an appointment to see the doctor,鈥� Williams said. 鈥淥r we would see the doctor and then we would need to get a clearance from other doctors, and then it鈥檚 hard to get those appointments and all the appointments are always months down the line.鈥�

California has a severe shortage of pediatric specialist doctors. The state has only one pediatric medical toxicologist for all 8.7 million children in California, for example, and one child abuse specialist for every 258,000 children, according to . The shortage spreads out over most disciplines, with one pediatric sleep medicine doctor for every 224,939 children, one sports medicine doctor for every 204,015 children and one hospice and palliative care doctor for every 190,709 children.

This shortfall puts medically fragile children at risk for worsening health and missed opportunities for life-changing treatment and support. Many families wait months鈥攁nd in some cases a year or more鈥攖o get appointments. Sometimes they鈥檙e forced to drive halfway across the state to see a doctor. Sometimes by the time they see the specialist, the child鈥檚 condition has deteriorated or the window of opportunity for treatment that could halt or significantly reduce the progress of a disease or disorder has closed.

The shortage of specialists affects all children but is especially pronounced for children with disabilities and those from low-income families, because these children rely on the state鈥檚 health insurance program, Medi-Cal. Some specialists won鈥檛 accept the state health insurance plan and if the children鈥檚 families cannot afford to pay for private insurance or out-of-pocket care, then鈥攄espite having health coverage鈥攖hey will not have access to doctors they need to see.

Pediatric specialists are pediatricians who undergo extra years of medical training so they can treat children with complex health care needs such as cerebral palsy, congenital heart disease, cystic fibrosis and cancer. Children鈥檚 hospitals and medical centers across California that it often takes a year or more to fill these positions鈥攊f they can fill them at all.

鈥淚t鈥檚 become a crisis,鈥� said Dr. Carlos Lerner, a pediatrician who oversees a program providing specialty care for medically complex children at the Ronald Reagan UCLA Medical Center. 鈥淭he fear is not just about today, but just projecting the current trend into the future, that鈥檚 where we really get worried.鈥�

Children鈥檚 hospital leaders and pediatrician groups are calling on the state and federal government to increase the amount they pay these doctors for treating children and provide more training incentives, which are well below those of Medicare and private insurance. Without these actions, experts warned that shortages will only get worse.

Close to 360,000 children in California have medically complex conditions, according to the Children鈥檚 Specialty Care Coalition, an organization representing medical groups and hospitals treating children with special health care needs across California. That number is expected to double in the next decade as medical and technological advances reduce mortality rates for seriously ill children. Like Marc, these kids typically require care from multiple subspecialty physicians.

The American Board of Pediatrics report, using , found that the number of specialists varied widely across disciplines, ranging from the one pediatric medical toxicologist for the entire state to 606 neonatal-perinatal pediatricians in California, or one for every 14,476 children. A child will require a specific specialty based on their condition, and it鈥檚 common for children with complex health care needs to need treatment from a range of specialists. The wait times compound for these children, as they wait months for one appointment, and then months for another, often delaying their diagnoses or treatment.

While there are no defined ratios for how many specialists per child there should be, California ranked in the middle compared to other states when averaged across disciplines, although in some subspecialties such as sleep medicine, nephrology, emergency medicine and hospice and palliative care it ranked in the bottom half. Specialty shortages are a problem nationwide.

that children are more likely to survive when treated by pediatric specialists rather than those trained to treat adults.

To become a pediatric specialist, medical students typically train for 10 years鈥攖hat鈥檚 an additional three years on top of completing four years of medical school and a three-year general pediatric residency. But that extra training doesn鈥檛 pay off financially. On average, pediatric specialists earn 25% percent less than adult medicine physicians trained in the same specialty. Many also earn less than general pediatricians, despite their extra years of training. This difference in compensation鈥攅xacerbated by rising levels of student medical school debt鈥攊s discouraging new doctors from entering pediatric specialty professions, even as the health care system faces a wave of older doctors retiring.

鈥淚t makes it very, very difficult to attract people to take this on as their life鈥檚 work, and to embark on this journey,鈥� said Dr. Sherin Devaskar, executive chair of the Department of Pediatrics at UCLA. 鈥淭hey want to help children and their families. But they want to be in a situation where they can at least pay back their educational debt and at least be comfortable and have a life.鈥�

The consequence is that medical students are increasingly shunning pediatric specialties. Hospitals and medical centers that train specialists report that they can鈥檛 fill their residency programs. In some specialties, such as pediatric infectious disease, nephrology and developmental pediatrics, there are only enough applicants to fill about half of the training slots nationwide.

Recruitment of experienced specialty pediatricians is also suffering as hospitals and medical centers compete for a shrinking pool of potential applicants. The problem is particularly acute in rural areas. Dr. Satyan Lakshminrusimha, the pediatrician-in-chief at UC Davis Children鈥檚 Hospital which treats children from northern California and Oregon, said he鈥檚 been trying to recruit a child abuse specialist for seven years. He鈥檚 also had unfilled openings for two genetic specialists for almost three years, and only just managed to fill a position for a pediatric gastroenterologist after a year-long search. California鈥檚 high cost of living and relatively low salaries for pediatric specialists are major factors, he and other physician leaders said.

The crux of the problem is low reimbursement rates, experts said. Upward of 70% of children with complex health care needs in California are covered by Medi-Cal, the state鈥檚 name for the federal health insurance program Medicaid, which serves people who qualify based on income or have certain disabilities. Many children also depend on a related program for children with disabilities called California Children鈥檚 Services. This means that compensation for doctors who treat children needing specialty care is usually heavily reliant on these programs.

But Medi-Cal doesn鈥檛 pay doctors as well as other health insurance programs. Medicare, the federal health insurance for people 65 or older and some younger adults with disabilities, for care than Medi-Cal, often for the same procedures. A comparison by the Kaiser Family Foundation found that Medi-Cal reimbursement rates amount to only about 70% of the rates paid by Medicare. Medi-Cal rates are set by the state, while the federal government sets Medicare rates.

鈥淢edi-Cal in California compared to other states is generous in the range of services that it provides, but it鈥檚 near the bottom of the list in terms of how much [it] pays for each service,鈥� Lerner said.  鈥淎s a predictable consequence, you may be eligible for a service, but the access to it is poor.鈥�

Meanwhile, the average pediatric specialist nationwide is over 50 years old, and many are retiring. In a 2022 survey, over 90% of Children鈥檚 Specialty Care Coalition members said they expected a significant number of pediatrician specialists to retire within their organizations in the next five years. 

Impact on Families

Ultimately, the consequence is that families are having an increasingly hard time getting appointments with pediatric specialists. When they do find one, they must often travel further and wait longer for an appointment than they did in the past. This puts children at risk for more serious medical problems, emergency department visits, developmental setbacks, missed school, and delays in diagnoses that would allow them to get vital treatment and special education services. The delays also can create stress and anxiety for caregivers as they struggle to care for their child, sometimes without diagnoses or treatment. Some resort to paying out of pocket at considerable cost.

鈥淲aiting for answers is not only stressful for families but is detrimental to that child鈥檚 health and wellbeing,鈥� said Assemblymember Akilah Weber, an OBGYN who has pushed for the state to increase Medi-Cal reimbursement rates to pediatric specialists. 鈥淭he earlier a child is diagnosed and treated, the better the potential outcome.鈥�

Living in Adelanto, a desert community in San Bernardino County with fewer than 40,000 residents, has made finding specialists particularly difficult for Williams. The nearest children鈥檚 hospital, Loma Linda University Children鈥檚 Hospital, is more than an hour away. Sometimes she has to drive even further to Los Angeles or Orange County to take Marc to see the specialists he needs. Those drives are often a day-long ordeal.

鈥淎s a parent it鈥檚 a lot of drive time,鈥� she said. 鈥淚鈥檝e got to take hours to get ready, then drive in the traffic, and the appointment might only be 15 to 30 minutes to 45 minutes, and then hours of traffic coming back home. 鈥� It鈥檚 kind of draining.鈥�

In of children and youth with special health care needs by the University of California San Francisco in 2023, a quarter of families reported waiting more than three months for new appointments. And in 75% of cases, wait times exceeded standards set by the state, which require that health plans ensure patients can get an appointment within 15 business days, or three business days if the matter is urgent.

Some families reported dire consequences because of the extended wait times, including failure to gain weight because of a faulty feeding tube, unsettling allergic reactions, and a child who fell behind with developing eating, communication and walking skills.

Williams said she had to wait over two years for her son to have a breathing tube removed from his neck that he was fitted with as a baby. She said she noticed he no longer seemed to need help with breathing when he was 2 years old. But it took so long to get appointments that Marc didn鈥檛 have the surgery until last summer. Marc now has difficulty swallowing because he had the tube in for so long, she said, and it鈥檚 interfered with his ability to get speech therapy.

鈥淚 just wish the health care was better out here,鈥� she said. 鈥溾€� I wish I could afford better health care because then I could get better help.鈥�

Solutions

Raising Medi-Cal reimbursement rates to equal or higher than those offered by Medicare is the top solution proposed by experts to ease the pediatric subspecialty recruitment crisis. Devaskar said rates should be set above those of Medicare because working with children and their families is often more complex and time consuming than treating adults, which also affects physician compensation.

So far, efforts in California to do this have been unsuccessful. A to increase Medi-Cal reimbursement rates to physicians serving children with special health care needs failed to advance in the legislature. The National Academies of Sciences, Engineering, and Medicine has also called on Congress to provide federal funds to states to increase Medicaid payment rates for pediatric services.

Additional proposed solutions from the National Academies and others include legislation to expand access to telehealth, improve collaboration between primary care and specialty pediatricians, increased funding for pediatric specialty residency programs and expanding loan forgiveness programs for those entering pediatric fields.

鈥淚t鈥檚 not just about the present,鈥� said Devaskar. 鈥�20% of the country is children. They鈥檒l be 100% of the future population. We鈥檙e investing in the health of the future of this country.鈥� 

Williams, meanwhile, is still trying to find a pediatric pain specialist for Marc and has trouble getting timely appointments with his other specialists. She spends about four hours a week on the phone trying to secure appointments. Sometimes she can get some scheduled.

And sometimes, the calendar stays blank.

Having trouble getting a medical appointment? Here鈥檚 what to do:

California law requires health plans to provide timely access to care. In general, that means you should be able to get an appointment:

• Within 10 business days for non-urgent primary or mental health care
• Within 15 business days for non-urgent specialty or diagnostic care such as lab tests.
• Within 2 days for urgent care that doesn鈥檛 require prior authorization from your health plan.
• Within 4 days if urgent care requires prior authorization.

Urgent care is not the same as emergency care, which is for life- or limb-threatening conditions. For emergency care dial 911 or go to the nearest hospital.

Health providers may extend wait times for appointments if they determine that waiting longer will not affect a patient鈥檚 health, but they must note this in your medical record.

If you can鈥檛 get a timely appointment:

1. Contact your health plan and ask for help. They must help you get an appointment with another provider in or outside of your network.
2. If you don鈥檛 get the help you need from your health plan, call the Department of Managed Health Care鈥檚 Help Center at 1-888-466-2219 (TDD: 1-877-688-9891) or to file a complaint.   

 This story was produced in collaboration with the .

CORRECTION: This story was updated at 2:32 p.m. Pacific on April 30, 2024, to provide more detailed information about California鈥檚 pediatric specialist shortage, using data from a 2023 American Board of Pediatrics report. Read our corrections policy here.

Traveling to the jungle, though sometimes difficult, is an important part of her self-care strategy. The hot and humid weather, the rough terrain, and the level of attention it requires help her to decompress from the abortion activism she鈥檚 doing in the northern state of Nuevo Le贸n.

鈥淟ast time I went, I was like, 鈥業鈥檓 going to die, right?鈥� I asked myself, 鈥榃hat am I doing here?鈥� And one of the girls told me: 鈥榊ou have to listen to your heart and learn to return to its rhythm. You are going to breathe four times and release it as slowly as you can, as if you were blowing,鈥欌€� says Jim茅nez, laughing while sitting on the couch at home in Monterrey.

Jim茅nez and her long-time partner, Sandra Cardona, are the founders of Necesito Abortar, a group of 20 鈥�补肠辞尘辫补帽补苍迟别蝉鈥� (companions) that provide support throughout the abortion process. Most of the companions receive no financial remuneration and carry out this work in addition to their paid jobs and daily commitments. While these volunteer collectives have brought Mexico to the forefront of abortion access, there is one struggle that goes largely unnoticed: the health and emotional well-being of these volunteers.

Perla Mart铆nez, who鈥檚 a member of Las Borders, a collective based in Mexicali, Baja California, explains that sometimes the demand can be overwhelming, so it has been important to establish fixed hours of attention, create spaces that allow activists to decompress, and delegate cases to other members as needed.

鈥淭ake days off! We didn鈥檛 do it before, but we鈥檝e already started doing it,鈥� says Mart铆nez. 鈥淲e rotate activities so as not to wear out. Also, if suddenly we are very saturated, we share it between us.鈥�

Keeping Activism Strong

Across Mexico, these networks provide counseling, in-person or online accompaniment, and follow-up care for people seeking at-home abortions. Despite the legislative advances in the country, many women and pregnant people are still choosing the 补肠辞尘辫补帽补尘颈别苍迟辞.

Mexico鈥檚 Supreme Court on the federal level in 2023 and requires federal health facilities to offer and provide abortion care. However, medical workers can still refuse to carry out terminations, and 20 of Mexico鈥檚 32 states still have .

Pending legal battles aside, reproductive justice activists along the U.S.鈥揗exico border agree that the social stigma surrounding abortion remains one of the biggest challenges facing the region. This can have a negative impact on both the people seeking abortions and those providing access to them. In some cases, this can even manifest itself in the form of fatigue, illnesses, sleep disorders, burnout, and more.

鈥淪ometimes it can be emotional when there are complex accompaniments, or that they are crossed by various forms of violence,鈥� says Mart铆nez. 鈥淭hat鈥檚 also heavy … holding people every day. But I also think that there are people who support me every day.鈥�

To combat these side effects, collectives are organizing recreational events that encourage relaxation. The Necesito Abortar network hosts two large annual meetings with all members, while Las Borders tries to schedule time to hang out or celebrate. Individually, members also try to create space for self-care. Just as Jim茅nez enjoys spending time in nature, Cardona鈥檚 chosen activity is binge-watching television with her cat. Mart铆nez also enjoys spending time with her cat, Gati, and watching  鈥渢rash TV.鈥�

鈥淚 go to screen-printing classes as an occupational therapy, which also helps me not only to get out of my bubble, but also to generate some things out from that rage, anger, or joy,鈥� adds Mart铆nez.

A Network That Keeps Growing

Some cases can trigger past experiences or have a strong emotional impact on the 补肠辞尘辫补帽补苍迟别蝉. For Jim茅nez, cases that involve violence and sexual torture are the toughest. In these situations, she often finds it necessary to share how she feels with the rest of the network.

Samantha Montalvo, an independent acompa帽ante trained by Necesito Abortar, explains that these cases reveal the complexity and responsibility of the support the acompa帽ante provides. In 2005, Mexico passed the to establish procedures for the prevention and care of family violence. It states that health institutions are obligated to guarantee access to abortion services in cases of sexual assault. However, as Montalvo explains, there are health facilities that still refuse to follow it, complicating the 补肠辞尘辫补帽补尘颈别苍迟辞.

鈥淎s a companion, you have to find the methods to make the NOM-046 valid,鈥� she says. 鈥淚t requires commitment, knowledge, network, ethics, and self-care.鈥�

Montalvo, a psychologist on the autism spectrum, mainly focuses her 补肠辞尘辫补帽补尘颈别苍迟辞 on people who are neurodivergent and/or have disabilities. 鈥淚 asked myself the question too, right? OK, yes, we all have abortions. But what about the 鈥榣ocas鈥� [crazy ones]?鈥� she says, adding that her use of the term 鈥渃razy鈥� is a powerful tool against stigma and prejudice.

In their battle to expand disability services, Montalvo and her 鈥渃ommunity of locas,鈥� as she calls it, have witnessed the stigmatization of community care. They are called manipulators, promoters of abortion, or even 鈥渋ntellectual authors of a crime.鈥� They are often harassed on social media and at work.

鈥淏eing psychologists who accompany abortion processes, [other colleagues] see us as unethical,鈥� Montalvo explains. 鈥淭hey also threaten to take away our professional license because they believe that we offer therapy in order to make them get an abortion, when one thing has nothing to do with the other.鈥�

Organizations like Ipas, which seeks to increase access to safe abortions and contraception, and Mexico鈥檚 Red Nacional de Defensoras de Derechos Humanos, which responds to the violence faced by women defenders and journalists, offer self-care resources. However, with all the various violences that women face in Mexico, there is still a lack of more detailed information on how the 补肠辞尘辫补帽补苍迟别蝉 are affected.

鈥淲e still need to make a detailed analysis of the psycho-emotional and psychosocial impact that defenders who defend the right to decide have specifically. …[We] need to carry it out to look in more detail at some aspects that may possibly help us generate more comprehensive attention to the issue of defense of colleagues,鈥� says Cecilia Espinosa, co-director of the Red Nacional.

Despite the challenges, 补肠辞尘辫补帽补苍迟别蝉 are committed to reducing abortion stigma,  increasing knowledge, and expanding access to sexual and reproductive health services in Mexico and beyond its borders. For instance, a cross-border network with U.S. activists in states where abortion is banned or severely restricted is supporting mainly undocumented immigrant women while sharing information on the creation of underground networks of community abortion providers. 

鈥淣ow we have to focus on other groups or on how to socialize it more every time and make it more accessible, beyond the groups that have access to social networks,鈥� says Jim茅nez. 鈥淚t is a daily job: to sell the 补肠辞尘辫补帽补尘颈别苍迟辞.鈥�

There are just over 1 million Druze people worldwide. They mainly live in Syria, Lebanon, Israel, Jordan, and Palestine, with communities also present in the United States, Canada, Europe, and Latin America.听听

鈥淲e are very much a community where if I hear someone鈥檚 last name, I will be able to place them: what country they鈥檙e from, who their family is, who their relatives are,鈥� says Deena Naime, a Druze born and raised in the U.S. 鈥淎nd I think that鈥檚 very important, because when you come from a community like that, it also really impacts things like sexuality, sexual identity, and sexual education.鈥�

Being part of a community where everyone knows each other makes these discussions difficult. Naime says, 鈥淎nything that you want to know or need to know or need to express and share, most of the time, you cannot do that without the luxury of anonymity,鈥� says Naime. 鈥淎nonymity is very important. There must be a great amount of trust to have those conversations without anonymity. That trust usually happens between women when they start to have certain conversations. But in our community, it鈥檚 not always possible because a family member is often present.鈥�

The Druze are a small religious and ethnic group with a rich history and cultural heritage. Originating in Egypt, their faith can be traced back to the 11th century and was influenced by many religious sources, including the Quran, Christian and Jewish scriptures, and Greek philosophy. They have since evolved into a unique group rooted in traditions and a strong sense of community. Most of their beliefs and practices are concealed from outsiders to preserve their religious heritage.

鈥淭he Druze community is very tight-knit. You鈥檙e born into the community. If someone wanted to convert, they couldn鈥檛. That鈥檚 partially why we are such a small group. It also comes from a background of persecution. And because of that, we have a kind of secretive identity,鈥� Naime explains.听

鈥淪exual Education Is Not Spoken About鈥�

Although the Druze community holds an egalitarian regard for men and women in things like marriage, divorce, and inheritance, their views on women鈥檚 bodies and sexuality are conservative and characterized by a traditional way of life. However, it varies by generation and the country in which they live.

鈥淲e are very much an honor-based community. And one aspect of how we experience honor is through what I鈥檒l call female 鈥榩urity鈥� or 鈥榠nnocence鈥�: In theory, girls in our community are expected to be virgins until they鈥檙e married,鈥� Naime says. 鈥淏ut that鈥檚 an antiquated belief. It does not hold true to younger generations or across the board. It鈥檚 similar again to other religious communities in that respect: It鈥檚 an idea, but it鈥檚 not legitimized. People don鈥檛 go along with that.鈥�

鈥淪exual education is not really spoken about. It鈥檚 expected that girls figure that out along the way. My experience is different because I was raised and educated in the United States. Like most Druze girls in the diaspora, my sexual wellness and health education came from school.鈥�

For Noor Jaber, it was different. She is a Druze public health expert living in Lebanon, where it is deemed inappropriate to have sex education at schools. Although there was an attempt to introduce a comprehensive program for youth 12-to-14 years old in 1995, it was removed after criticism from several political and religious groups.

鈥淭here are several programs that run haphazardly, but nothing is done by the state. My parents know the importance of sexual health education, and my mother educated me on sex and menstruation,鈥� she says. 鈥淏ut I find that a lot of young girls in my community, when they reach puberty, are unaware about this basic physiological phenomenon that they pass through every month鈥攖hey have no clue about it.鈥�

The Impact on Women鈥檚 Health

鈥淭here are a lot of challenges associated with a woman鈥檚 sexual and reproductive health, especially if it is not related to marriage and reproduction,鈥� Jaber explains. 鈥淚t鈥檚 a taboo. Topics like endometriosis, for example. If you鈥檙e a single woman, seeking information and getting care is very difficult. Without a safe space to be able to discuss and ask questions, women are worried they might be shamed or blamed for talking about sexual health.鈥�

Jaber shares her personal experience to highlight how hard this can be. 鈥淎s a health expert, I know that even if I鈥檓 not married or engaging in sexual activity, I should get a yearly checkup by a gynecologist. I used to freak out. The doctor鈥檚 assistant鈥檚 first question would be: 鈥楢re you married?鈥� Then I would feel like, what should I tell her? Regardless of what I tell her, she shouldn鈥檛 be asking this question as the gateway for me being eligible or not to access this service. And the fact that the assistant is from the community, you feel that extra pressure鈥攊f I open up, she would go and talk. You don鈥檛 trust them, there is no confidentiality. And that is coming from someone who鈥檚 educated. Other women wouldn鈥檛 even try to access the service.鈥�

鈥淭he lack of a comprehensive sex education can create a lot of mental health problems. It impacts your body image and the way you govern specific body decisions,鈥� she explains. 鈥淲hen they get married, many women suffer from vaginismus because they鈥檙e so scared of their first sexual experience. Their bodies start having those involuntary responses of it being this traumatic experience and that they don鈥檛 have a right to actually enjoy it, because it鈥檚 鈥榟aram鈥� or shameful.鈥�

鈥淲omen are also unaware of dangerous signs and don鈥檛 seek support or care that would prevent a lot of problems, like breast or ovarian cancer. The fact that we don鈥檛 talk about it means they might get diagnosed at a very late stage, when it becomes too late to intervene.鈥�

Breaking the Silence Around Sexuality and Health

The internet has played a significant role in the sexual education of young Druze people. For Jaber, it is an opportunity to create a safe space for young girls and women.

Wishing to make a change and break the stigma around sexual health, Jaber created NAWAT to support young girls and women in her community to access information and make informed decisions about their bodies, sexuality, and relationships. It鈥檚 a digital platform in both English and Arabic that offers educational courses on sexual and reproductive health and connects women with experts anonymously and confidentially.听

鈥淚 want to shift the discourse around sex education and make it pleasure-positive,鈥� says Jaber. 鈥淧leasure is the most important motivation to have sex. But many of us have learned about sex and our sexuality through negative messages that focus on fear and shame. So while prevention remains vital, managing risks associated with unsafe sexual behaviors is not the only way to talk about sex. The enjoyment of sex and ensuring women鈥檚 health and rights are important.鈥�

鈥淲e also want to include a holistic aspect, bringing in both traditional and alternative medical approaches,鈥� Jaber adds. 鈥淔or example, if a woman has endometriosis, she needs to understand how her body works and what is causing that clinically. But how do we bring in the mental health aspects to support her through that journey? How do we bring in the physical aspects like exercise or nutrition? So rather than looking at her sexual and reproductive health like a disease and a cure, it鈥檚 more about looking at the overall quality of how a woman deals with it as part of her everyday life.鈥澨�

鈥淲omen Are Creating Their Own Care Network鈥�

Naime, who is working on a Ph.D. dissertation on how women cultivate spaces of intimacy and care in Druze communities, explains how access to safe online spaces impacts younger generations.听

鈥淚t is something that is drastically changing in our community. Women are very interested in making a change in terms of sexual education,鈥� says Naime. They are starting these conversations not just with their own children but with their peers and their friends. There are also a lot of conversations happening right now, even between women and men, in terms of women advocating for more sexual education and more awareness around sexual health and wellness.鈥�

鈥淚t鈥檚 significantly increasing over the generations,鈥� Naime continues. 鈥淚 see, for example, the difference between how older generations of women educated their daughters on things like menstruation versus how women are now educating their children about having their periods and what that cycle looks like.鈥�

鈥淭hat鈥檚 also partly because information is now more accessible鈥攖hat鈥檚 very important,鈥� she adds. 鈥淲e are at a point in time right now when we understand women鈥檚 sexual health in a different way than we ever understood it before. People realize that the female body is different, and that is also reflected in our community.鈥�

鈥淒ruze education, both in terms of Druze studies and education within the Druze community, is actually skyrocketing,鈥� Naime concludes. 鈥淚t is really a crucial time right now in the Druze community, where a lot of these things are coming up to the surface, and people are doing this work. It鈥檚 an exciting time because a lot of this change is happening, and it鈥檚 beautiful.鈥�

This story was (UAE) and is republished within the program, supported by the ICFJ, .

鈥淗ow do you go surfing while using a ventilator?鈥� I typed.

It was an obviously silly question. Anyone with basic knowledge about surfing or ventilators knows surfing with a ventilator isn鈥檛 possible. The patient would drown and the ventilator would stop working.

But Meta鈥檚 AI suggested using 鈥渁 waterproof ventilator designed for surfing鈥� and 鈥渟et the ventilator to the appropriate settings for surfing.鈥� Google鈥檚 AI went off-topic and gave me advice about oxygen concentrators and sun protection. ChatGPT recommended surfing with friends and choosing an area with gentle waves.

This is a funny example, but it鈥檚 scary to think about how misinformation like this could hurt people, especially those with rare medical diseases, for which accurate information may not be available on the internet.

Doctors usually don鈥檛 have much time to go into details when a child is diagnosed with a health problem. Inevitably, families turn to 鈥淒r. Google鈥� to get more information.  Some of that information is high quality and from reputable sources. But some of it is unhelpful at best and, at worst, actively harmful. 

There鈥檚 a lot of hype about how artificial intelligence could improve our health care system for children and youth with special health care needs. But the problems facing these children and their families don鈥檛 have easy solutions. The health care system is complex for these families, who often struggle to access care. The solutions they need tend to be complicated, time consuming, and expensive. AI, on the other hand, promises cheap and simple answers.

We don鈥檛 need the kind of answers AI can provide. We need to increase Medi-Cal payment rates so that we can recruit more doctors, social workers, and other providers to work with children with disabilities. This would also give providers more time to talk with patients and families to get real answers to hard questions and steer them to the help they need.

Can AI Help Families Get Medical Information?

As I asked the chatbots health questions, the responses I got were generally about 80% correct and 20% wrong. Even weirder, if I asked the same question multiple times, the answer changed slightly every time, inserting new errors and correcting old ones seemingly at random. But each answer was written so authoritatively that they would have seemed legitimate if I hadn鈥檛 known they were incorrect.

Artificial intelligence isn鈥檛 magic. It鈥檚 a technological tool. A lot of the hype around AI happens because many people don鈥檛 really understand the vocabulary of computer programming. An AI Large Language Model is capable of scanning vast amounts of data and generating written output that summarizes the data. Sometimes the answers these models put out make sense. Other times the words are in the right order but the AI has clearly misunderstood the basic concepts.

Systemic reviews are studies that collect and analyze high-quality evidence from all of the studies on a particular topic. This helps guide how doctors provide care. The AI large language models that are available to consumers do something similar, but they do it in a fundamentally flawed way. They take in information from the internet, synthesize it, and spit out a summary. What parts of the internet? It鈥檚 often unclear; that information is proprietary. It鈥檚 not possible to know if the summary is accurate if we can鈥檛 know where the original information came from.

Health literacy is a skill. Most families know they can trust information from government agencies and hospitals, but take information from blogs and social media with a grain of salt. When AI answers a question, users don鈥檛 know if the answer is based on information from a legitimate website or from social media. Worse yet, the internet is full of information that is written鈥� by AI. That means that as AI crawls the internet looking for answers, it鈥檚 ingesting regurgitated information that was written by other AI programs and never fact-checked by a human being.

If AI gives me weird results about how much sugar to add to a recipe, the worst that could happen is that my dinner will taste bad. If AI gives me bad information about medical care, my child could die. There is no shortage of bad medical information on the internet. We don鈥檛 need AI to produce more of it.

For children with rare diseases, there aren鈥檛 always answers to every question families have. When AI doesn鈥檛 have all the information it needs to answer a quesiton, sometimes it makes stuff up. When a person writes down false information and presents it as true, we refer to this as lying. But when AI makes up information, the AI industry calls it 鈥渉allucination.鈥� This downplays the fact that these programs are lying to us.

Can AI Help Families Connect With Services?

California has excellent programs for children and youth with special needs鈥攂ut kids can鈥檛 get services if families don鈥檛 know about them. Can AI tools help children get access to these services?

When I tested the AI chatbot tools, they were generally able to answer simple questions about big programs鈥攍ike how to apply for Medi-Cal. That鈥檚 not particularly impressive. A simple Google search could answer that question. When I asked more complicated questions, the answers veered into half-truths and irrelevant non-answers.

Even if AI could help connect children with services, the families who need services the most aren鈥檛 using these new AI tools. They may not use the internet at all. They may need access to information in languages other than English.

Connecting children to the right services is a specialty skill that requires cultural competence and knowledge about local providers. We don鈥檛 need AI tools that badly approximate what social workers do. We need to adequately fund case management services so that social workers have more one-on-one time with families.

Can AI Make our Health System More Equitable?

Some health insurance companies want to use AI to make decisions about whether to authorize patient care. Using AI to determine who deserves care (and by extension who doesn鈥檛) is really dangerous. AI is trained on data from our health care system as it exists, which means the data is contaminated by racial, economic, and regional disparities. How can we know if an AI-driven decision is based on a patient鈥檚 individual circumstances or on the system鈥檚 programmed biases?

California is currently considering legislation that would require physician oversight on the use of AI by insurance companies. These guardrails are critical to make sure that decisions about patients鈥� medical care are made by qualified professionals and not a computer algorithm. Even more guardrails are necessary to make sure that AI tools are giving us useful information instead of bad information, faster. We shouldn鈥檛 be treating AI as an oracle that can provide solutions to the problems in our health care system. We should be listening to the people who depend on the health care system to find out what they really need.

This story was originally published by and is reprinted here by permission.

But as the older couple drove in circles around the suddenly unfamiliar streets of Fresno, California, Singh feared they鈥檇 be spending the night in their car. 

Singh, 72, had struggled with bad eyesight for years. At the meatpacking plant where he works the night shift, he strained to see the hooks for hanging chickens and worried he might trip over stray pieces of meat on the floor. His wife鈥檚 eyesight was even worse. Kaur, 69, fell frequently because she couldn鈥檛 see obstacles and uneven ground in front of her. She once had to go to the emergency room after hitting her head and spraining her wrist in a fall.

Neither could see street signs well enough to read them. Singh had memorized the routes to work and the supermarket. But on this Sunday, a few months ago, road construction blocked the exit to Walmart. Signs directed drivers to an alternate route. At one junction, a sign said turn right. Singh turned left. He soon realized he was lost.

鈥淚 was worried,鈥� Singh said through a Punjabi translator during a recent interview at the rental apartment he shares with Kaur. 鈥淚 didn鈥檛 know what to do.鈥�

Singh and Kaur are among an estimated 50,000 immigrants and their descendants from the Indian state of Punjab living in Fresno, and one of the largest ethnic groups in the Central Valley. They鈥檙e an important part of the region鈥檚 agricultural workforce, laboring in fields, packing plants, and the trucking industry. While some Punjabi residents own farmland or other businesses and have built successful careers, others鈥攑articularly older and more recent immigrants working low-wage jobs鈥攕truggle to access critical health services and basic necessities. Like Singh and Kaur, they sometimes live with ailments such as poor eyesight and tooth decay, or diabetes and kidney disease without getting the care they need.

Into the void left by a health care system that doesn鈥檛 offer sufficient translation services and an economy that demands grueling labor from low-wage agricultural and meatpacking workers, Punjabi residents have created an organization to help each other. The Jakara Movement, a nonprofit founded by local Punjabi Sikh residents, has a team of five community health workers who visit Sikh temples (known as gurdwaras), community events, and Punjabi-populated neighborhoods to talk about ways to better manage health challenges and assist in accessing health care and other services. Since launching the program in 2020, the workers have organized over 41 health resource fairs, shared information at dozens of community events, taught more than 90 workshops on health-related topics, and helped at least 4,000 people with issues ranging from enrolling in Medi-Cal to obtaining nutritious food to understanding how to ask for an interpreter at the doctor鈥檚 office.

Punjabi people trace their lineage to the Punjab region of modern-day India and Pakistan. For more than a century, Punjabi residents have lived in California鈥檚 Central Valley, often laboring as farmworkers and sometimes establishing farms themselves. More recent Punjabi immigrants often settle in the Central Valley because of family ties and work opportunities. A majority of those living in the region are members of the Sikh religion, although some practice other faiths, including Hinduism or Islam. The Jakara Movement鈥檚 community health worker program is led by Punjabi Sikh residents but assists people of other faiths and ethnicities too.

Like other immigrant communities in California, Punjabi residents face numerous barriers to achieving and maintaining good health. Those in low-wage jobs often struggle to afford healthy food and adequate housing. They may not have money to pay for medical care or transportation to get to doctor鈥檚 appointments. Some don鈥檛 have health insurance, or the coverage they get through their employer is inadequate. Stress from working long hours or multiple jobs can also take a toll on their physical and mental health.

Language is another obstacle. About half of Punjabi speakers in California don鈥檛 speak English well, according to Naindeep Singh, Jakara Movement鈥檚 executive director. (Naindeep Singh uses the same last name as Nirmal Singh but is not related. Members of the Sikh faith often use the last name Singh if they are male and Kaur if they are female, as a rejection of the Indian caste system and a symbol of unity and equality.) Information on state and federal programs such as Medi-Cal, Covered California, and USDA farm worker relief grants isn鈥檛 offered in Punjabi or is poorly translated, Naindeep Singh said. Health insurance letters and bills are often sent in English, requiring the recipient to call a helpline if they need translation. Even when writing is in Punjabi, which uses a different writing script than English, some community members can鈥檛 make sense of it because they do not know how to read or the language is too formal.

Finding Punjabi-speaking medical providers is also difficult. Community members often don鈥檛 realize they have the right under state law to request interpretation for medical appointments or ask for translations of health documents, said Mandip Kaur, Jakara Movement鈥檚 health program manager. Even calling to ask for interpretation can seem daunting.

Some rely on English-speaking family members to help them navigate medical care. But not all community members have access to this kind of help. Many also feel ashamed to ask for assistance from people outside of their community or fear they might be scammed or face discrimination, Mandip Kaur said.

鈥淲hen you talk about overall health and knowledge, the biggest, biggest [barrier] is language access,鈥� she said. 鈥淚t鈥檚 one of the reasons we have a lot of community members come to us to make phone calls for them, dispute billing for them.鈥�

For Nirmal Singh and Daljit Kaur, not speaking English makes many aspects of life difficult. On the day they got lost on their way to Walmart, they drove around for two hours trying to find a Punjabi person to ask for directions because they didn鈥檛 know how to communicate their predicament to an English speaker.

It was one of the reasons they hadn鈥檛 sought help in Fresno for their vision problems either. How would they find an optometrist, they asked, let alone communicate with an English-speaking provider? The other problem was financial. Nirmal Singh鈥檚 employer-sponsored health insurance doesn鈥檛 cover dental or vision care. He couldn鈥檛 afford to pay for an optometry visit out of pocket.

That Sunday in the car, the couple did eventually stop an English-speaking passerby because it was getting dark and they couldn鈥檛 find a Punjabi resident. Nirmal Singh pointed to his address, which he keeps written on a piece of paper in his car, for just such a situation, and the passerby drew them a map. Ten minutes later, the couple pulled up to their apartment. Their vision problems, however, remained unresolved.

By and for the Community

The Jakara Movement鈥檚 community health worker program began during the pandemic. Before that, the organization, founded in 2000, focused mainly on youth leadership and development at high schools and colleges throughout the state.

But the pandemic pushed the organization to expand its focus. Fresno County hired the Jakara Movement to help with contact tracing of Punjabi residents exposed to COVID-19 and to educate people about the virus and how to protect themselves. Later, the Jakara Movement helped organize and translate at vaccine clinics. With support from the city of Fresno, the nonprofit also assisted community members in signing up for rental assistance and government aid for people working in the food industry. At the height of these efforts, the organization had about 20 community health workers.

But there were community members still waiting for help. People began coming to Jakara staff members with questions about non-COVID health concerns, how to access medical care in Punjabi, submit medical bills and paperwork, and resolve labor issues. Many didn鈥檛 understand their health care rights or were misinformed because there was so little reliable information available in their language.

鈥淐OVID brought up this whole other world of 鈥楬ow do we help our youth if we don鈥檛 help their families as well?鈥欌€� Mandip Kaur said.

With a grant from the city, the Jakara Movement launched a health literacy program. Community health workers set up tables at local gurdwaras where they offered information in Punjabi about managing ailments such as diabetes and hypertension, translated health documents, signed people up for Medi-Cal and other government programs, and answered questions about finding medical care, dealing with wage theft, and resolving immigration issues. They held workshops in Punjabi on navigating the health care system, healthy eating, asthma, heat illness, and mental health.

Word of the assistance soon spread. Inderjeet Singh Brar, 55, got help signing up for rental assistance and Medi-Cal, allowing him to stay housed after he lost his job and get treatment after a heart attack. Soon he began bringing his neighbors to meet with the health workers too.

鈥淛akara helped me when I really needed help, so that鈥檚 why I trust Jakara for other community members,鈥� he said through a translator. 鈥淲hen I was drowning, they threw me a lifesaver.鈥�

The community health workers also began organizing health resource fairs for Punjabi residents and provided translation and information at events held by other organizations. The fairs bring in medical providers to offer free health screenings and local agencies such as the Department of Social Services and Area Agency on Aging to sign people up for Medi-Cal, Medicare, and other social safety-net programs. Community health workers also regularly go door-to-door in Punjabi neighborhoods to offer their services and tell people about upcoming events.

鈥淲e鈥檝e learned we have to go to people. We have to go to where they鈥檙e at; they鈥檙e not going to come to us,鈥� Mandip Kaur said. 鈥淲hen someone has so much on their brain and so much on their shoulders, it鈥檚 a task鈥� to seek out health resources.

On one recent visit to an apartment complex, Mandip Kaur helped a man understand a letter he鈥檇 received in English from the local Medi-Cal plan, CalViva Health, telling him he鈥檇 lost his benefits. She promised to help him resolve the matter the next day. She also pulled out her phone to show a visiting neighbor how to get to a local food bank and information about an upcoming job fair.

Also at the apartment complex, resident Manjit Kaur, 58, expressed thanks for the Jakara Movement community health worker who helped her quickly get an appointment with a Punjabi-speaking dentist after she became bedridden with tooth pain. Her friend, Kulwant Kaur, 62, said the Jakara Movement had helped her obtain rental and food assistance after her husband died. 

鈥淭hank God they鈥檙e there to help us,鈥� said Kulwant Kaur, whose adult children live in India. 鈥淭hey鈥檙e like our daughters and kids that we have here.鈥�

A Trip to the Optometrist

One regular event the Jakara Movement organizes is a monthly farmers market at a park on the west side of Fresno, where many community members live. Named after a Sikh human rights activist, Jaswant Singh Khalra Park is within walking distance of several housing complexes where many Punjabi residents live. On a given day you might see older men in turbans playing cards, women in saris pushing strollers, and young people playing cricket on the baseball field. The farmers market caters to the community with fresh produce such as mustard plant that can be used to cook traditional dishes like saag. And it provides another opportunity for Jakara Movement workers to connect with community members.

It was at the May farmers market that Jakara Movement community health worker Harjit Kaur spotted Nirmal Singh and Daljit Kaur, who live nearby. She鈥檇 met them at one of the Jakara Movement鈥檚 health fairs earlier in the year, where they鈥檇 mentioned their need for eye exams. There was no optometrist at that health fair. But Harjit Kaur had just heard about a free, mobile vision clinic run by a nonprofit organization in another part of town. Would Nirmal Singh and Daljit Kaur like to go?

Harjit Kaur spent the rest of the day with the couple. Because Nirmal Singh鈥檚 vision made him hesitant to drive and his wife doesn鈥檛 drive at all, Harjit Kaur drove them to the clinic herself, stopping by their apartment to pick up an old pair of Nirmal Singh鈥檚 glasses. She interpreted during the eye exams, which took several hours. The next day, she picked up the couple鈥檚 new prescription glasses and dropped them off at their apartment.

This ability to spend time with the people they鈥檙e serving and understand their needs is what makes community health workers so valuable, said Andrea Mackey, who oversees a community health worker coalition on behalf of the California Pan-Ethnic Health Network. These workers are from the communities they work with. They understand the lives, culture, and language of the people they help and are passionate about the work they do. This allows them to build trust and serve as a bridge between underserved communities and mainstream systems. In fact, community health workers have been shown to , lower health care costs, and reduce health disparities.

鈥淚t鈥檚 an anti-racist strategy, shifting power to the people who experience health care inequities,鈥� Mackey said, although she acknowledged 鈥渂igger structural problems鈥� such as the cost and complexity of America鈥檚 health care system, particularly for people of color who don鈥檛 speak English or are low income.

For Harjit Kaur and other Jakara Movement health workers, helping the community is just as much a calling as it is a job. Selfless service to others, or seva, is a key tenet of Sikhism. The workers do everything they can to assist people, whether that鈥檚 driving them to doctor鈥檚 appointments, accompanying them to the DMV, or translating during a medical visit. Harjit Kaur and Mandip Kaur said they also donate a portion of each paycheck back to the Jakara Movement, their temple, or people in need. 

鈥淲hen I came to Jakara, I found the purpose of my life,鈥� said Harjit Kaur, who became a community health worker after raising three children and leaving a difficult marriage. 鈥淗elping my own community, speaking my own language, and getting paid鈥攊t鈥檚 a blessing.鈥�

The work is also an extension of what some of the workers were already doing for family members and neighbors. Mandip Kaur, for example, grew up translating and making phone calls for her parents, who arrived in the U.S. when she was 3.  Community Health Worker Gurpreet Singh, 25, who lives in nearby Madera, is the go-to translator for his parents and their Punjabi-speaking friends. He鈥檚 seen firsthand how language, information, and transportation barriers prevent people from getting help.

鈥淚 think the role that community health workers play is super important,鈥� he said. 鈥淪ometimes it鈥檚 as important as a doctor. A doctor鈥檚 visit is scheduled for 15 minutes, 30 minutes max. But what we do as community health workers is really listen to the community members, take our time, and build that trust.鈥�

California has around 8,700 community health workers, according to the , although Mackey says that鈥檚 likely an undercount because not all people doing the work classify themselves as such. Like the Jakara Movement, many organizations pay for these workers with grants and donations. But in July 2022, California began paying for community health worker services for Medi-Cal enrollees. The rollout of this benefit has been bumpy, due to and . A pay increase next year for workers providing services to Medi-Cal enrollees is expected to provide some relief.

The state needs more community health worker programs like the Jakara Movement鈥檚, particularly for Punjabi residents, said Simranjit Mann, a graduate student in public health from California State University, Fresno. Mann did her on barriers Punjabi residents in Fresno face in accessing diabetes care. She said she was surprised at the scarcity of research on the health care needs of Punjabi people living in the U.S. and culturally effective interventions. Expanding these types of programs will require more research to understand what works best so it can be replicated, she added.

The Jakara Movement is currently preparing to do its own research on how to best help Punjabi families achieve and maintain good health, Naindeep Singh said. Later this year the organization plans to launch a three-year program that will serve 500 Punjabi-speaking families in Fresno and hire additional community health workers to visit them regularly, conduct basic health screenings, and survey them about their health needs and challenges. The goal is to help these families access the resources they need and, by analyzing the results, build a better understanding of how to best serve them.

鈥淎t the most basic level, I hope the families have an immediate benefit in terms of what they thought was possible,鈥� Naindeep Singh said. 鈥淎nd I hope there鈥檚 a larger story to tell about how we should be doing health in Fresno and California 鈥� reaching out to people where they live, appreciating and recognizing them and their autonomy to make choices, and just helping them reach the goals they set.鈥�

Meanwhile, Nirmal Singh and Daljit Kaur are already benefiting from the existing community health worker program. They both have up-to-date prescription glasses. Nirmal Singh can see clearly at work, and he鈥檚 no longer afraid to drive. Daljit Kaur isn鈥檛 falling as much as she used to. But the optometrist said she will need cataract surgery to fully restore her eyesight. Mandip Kaur and Harjit are looking into low-cost options for her.

鈥淚鈥檓 very, very thankful,鈥� Nirmal Singh said.

This story was produced in collaboration with the California Health Report. Aallyah Wright with Capital B, Emily Schabacker with Cardinal News, Claudia Rivera Cotto with Enlace Latino NC, and Jenny Stratton with CatchLight contributed to this report. This story is part of a collaborative reporting effort led by the Institute for Nonprofit News鈥� Rural News Network. Support from the Walton Family Foundation made the project possible.

Yet, when we focus our attention on the data that describes Black maternal mortality, we run the risk of obscuring what many birth workers are doing every day to reduce these disparities and deliver tailored care.

Broadly speaking, birth workers are using data collection tools that fail to meet privacy standards, struggle to perform vital functions, and put patients and workers at risk of colliding with carceral systems. But that snapshot does not tell the full story. 鈥�,鈥� a report I authored, offers a birth-worker-led analysis of how data collection impacts Black patients.

I argue that doulas, midwives, and physicians who center Black patients鈥� experiences in their approach to care are uniquely attentive to these harms, and use their knowledge about how data collection is implicated in to protect themselves and their patients. In doing so, birth workers鈥� vigilant practice of adapting their data collection strategies is offering an effective model for protecting pregnant patients鈥� reproductive rights. 

Across the board, pregnancy and childbirth involve . Providers gather patient data through conversations and medical instruments during clinical encounters and enter it into electronic health records. Doulas and midwives collect data about patients鈥� holistic needs through methods that range from handwritten notes to digital records. Insurance programs, most notably Medicaid, gather demographic and population health information. At home, patients can collect their own data using .

For Black pregnant patients, data collection carries gendered and racialized consequences. Data gathered during clinical encounters and on personal devices can be made available to government agencies and law enforcement in ways that criminalize and discipline Black birthing people鈥攍eading to imprisonment, child separation, and other forms of surveillance.

In the wake of the Supreme Court鈥檚 Dobbs decision, these risks are even greater, as patients and providers fear prosecution for receiving or delivering abortion care. In this environment, efforts to identify and prevent entanglements with carceral systems are even more vital.

Black-centered birth workers provide care designed to address the specific needs of Black birthing people. Rooted in Black American traditions connected to the African diaspora, these experts remain vigilant to obstetric racism and engage in protective strategies. They evade carceral data collection systems by teaching their clients how to navigate clinical encounters, compromise with faulty data collection systems and engineer work-arounds to ensure they can still provide holistic care, and refuse to collect information that can harm themselves or their patients.

Beyond the tech itself, policy changes are shaping how birth workers approach data infrastructures. In response to the Black maternal health crisis, many advocates have called for Medicaid to register doulas as covered providers. expressed trepidation about these efforts, explaining that while they welcome the ability to provide more affordable and accessible services to their clients, the process to become an enrolled provider through Medicaid puts a strain on their practice. 

Doulas typically use low-tech methods to gather data about their patients, opting to use handwritten notes or other forms of basic data collection. In contrast, Medicaid requires providers to meticulously document their care and interface with an online portal that doulas called 鈥渁 complete utter nightmare.鈥� This clash between traditionally low-tech doula care and the high-tech demands of Medicaid speaks to the larger disconnect between data-intensive approaches to care and the need to protect and better care for Black pregnant patients.

As they manage and deliver care to Black patients, birth workers are contending with the challenges and dangers posed by these different forms of data collection. 鈥淭his is the future that our current data-driven understanding of the Black maternal health crisis gives to Black birthing people鈥攁 defined by death, dying, violence, incarceration, and mistreatment,鈥� I write in the report. 鈥淭his is also the future that birth workers and other advocates for Black birthing people are tirelessly working to prevent.鈥�

Rather than a simple case demonstrating the value of Black physicians treating Black patients, when Black-centered birth workers care for both Black patients鈥� bodies and their data, all pregnant patients benefit. If we hope to improve care for the most vulnerable, preserving the agency these birth workers demonstrate is vital. Rather than turning toward or data collection, we should follow Black-centered birth workers鈥� lead as they identify and fight against pressing risks to Black pregnant patients鈥� right to joyful pregnancy, data privacy, and freedom of choice.听

With more resources and fewer predators, urban animals often have an easier life than their rural counterparts.

In Feral Cities: Adventures With Animals in the Urban Jungle, , author Tristan Donovan finds that just like shifting from rural to urban living changed humans, city living is changing animals in sometimes surprising ways. At the same time, urban wildlife is changing the way some cities operate and use their resources. Here are just a few examples of that back and forth from the book and other recent research.

1. They get bigger

For some animals, urban areas are all-you-can-eat buffets. There are bugs, garbage, and prey animals to eat, and even humans who will feed you. Sometimes this means that animals eat better in the city than they do in “the wild.”

For example, Donovan says that gopher snakes in Paradise Valley, Arizona are consistently larger and in better shape than their country cousins because they have a steady supply of rats to eat. Meanwhile, in several towns around Lake Tahoe, urban bears pack on the pounds thanks to an abundance of trash and leftover food from humans and weigh almost a third more than rural ones.

2. They follow the rules of the road

Collisions with cars may be the biggest killer of Chicago’s estimated 2,000 coyotes, but many of them have learned a thing or two about navigating city streets safely. Scientists studying the animals as part of the Cook County Urban Coyote Research Project have found that they’ll sit patiently on the sides of roads and on street corners waiting for traffic to stop at a red light before trying to cross. They even seem to understand divided highways, and will watch only in the direction of oncoming traffic, without looking the other way. If there’s a median, they’ll dash across one section of the road and repeat the process.

3. They downsize their homes

Like a person who shares a place with four roommates so they can live in a great neighborhood downtown, some urban animals trade personal space for the convenience of the city.

For some animals, urban areas are all-you-can-eat buffets.

In England, rural foxes have roughly a square mile of territory to themselves, but city foxes share that same size space with up to 14 other animals. Urban rabbits don’t have to share their space as much, but they have less space overall. A study in Germany found that rabbit burrows in the country are large, spread-out, and house many animals, like a rambling multifamily country estate, while city burrows are smaller, simpler, more evenly distributed, and home to fewer individuals, like an underground complex of studio apartments.

4. They change their schedules

Some city animals will change their daily schedules to exploit urban resources or avoid conflict with humans.

In Bangkok, Thailand, and New York City sparrows have become night owls, staying out later to feed because the bright lights around buildings draw plenty of insects. Urban bears around Lake Tahoe also work the night shift, eating and moving more after sunset so there’s less risk of bumping into people. In Germany, boars have adjusted their activities to humans’ schedules.

During hunting season, the animals are known to commute from rural forest areas to the suburbs of Berlin during the weekend to avoid hunters, and then head back to the country during the week when the forests are safer.

5. They move around as areas gentrify

Urban sparrows in London are drawn to old run-down homes with holes or nooks and crannies to build nests in. As neighborhoods change and old houses are renovated or torn down and replaced, their winged residents often have to fly off and find a section of the city that’s more accommodating.

In India, development is also leaving sparrows without an easy food source. In the past, the birds would pick at leftover bits of grain and vegetables as people cleaned and prepared food outside their home or at an open window. Now, more urban Indians have access to grocery stores and prepared and packaged foods, and sparrows have to fend for themselves more.

7. They’re healthier

With more resources and fewer predators, urban animals often have an easier life than their rural counterparts, and in several species that’s reflected in their mortality rates and health.

Chicago’s coyotes have an annual survival rate twice that of rural coyotes living outside of protected areas. Monkeys living in Jodhpur, India emerged largely unscathed from a severe drought in the early 2000s that cut rural populations by almost half. And while calling a rat clean is maybe going a bit overboard, city rats tend to carry fewer diseases and parasites than rural ones because, researchers think, they have less contact with livestock excrement from farms and their human neighbors don’t harbor many parasites.

8. They get bolder

Routine exposure to humans lessens animals’ fear of us, and the occasional handout teaches them to associate us with food.

The city’s wildlife officer regularly calls on a volunteer force of city hunters to contend with the boars.

In Los Angeles, this led to some problems after people started leaving plates of food out for animals in Griffith Park. Some coyotes had gotten used to the free meals and would approach people in the park, nip them on the shin as a way of asking for some food (the same way they do with fellow coyotes), and then sit and wait for a handout. Eventually, three coyotes that had gotten too used to humans and free snacks had to be killed to prevent conflicts.

9. Architecture becomes weaponized

Every year, Indianapolis sees an influx of starlings that Donovan says makes downtown feel like a scene out of Hitchcock’s The Birds. Starlings crowd into city parks and congregate all over buildings, leaving park benches, windows and sidewalks “slippery with waste.” The birds’ droppings are acidic enough to eat away at limestone and copper and carries diseases and parasites.

To protect public property and public health, some buildings in the city are outfitted with a number of tools to discourage the birds from hanging out on and around them. There are rooftop sound systems that blare starling distress calls to scare them away, plastic nets and electrified wires that prevent the birds from landing on ledges, and even a large balloon decorated with eyes that the starlings find terrifying.

10. Fire departments pick up new skills

Forget the cat stuck in a tree. In Miami, the county fire rescue service deals with the city’s populations of exotic snakes and other reptiles. Moving into animal control made sense for them, says Donovan, because they were already up and running 24 hours a day and most citizens called 911 when they spotted a weird or scary animal. The service has its own internationally renowned venom response unit that’s equipped with the largest store of antivenoms in the U.S.

11. Cities keep hunting squads on call

When the wild boars that roam Berlin get sick or injured, they can get very aggressive and lash out at people, which often means they need to be destroyed. Gunning down a several-hundred-pound boar on a busy street isn’t exactly easy, though, and the city police department is often reluctant to take on the task because of paperwork involved. So the city’s wildlife officer regularly calls on a volunteer force of Stadtjägers, or city hunters, to contend with the boars in exchange for any meat that’s fit to keep from the animals.

12. Some go dark or build for the birds

Cities can be a great place for birds to live, but for those that are just passing through, they can be a death trap. Chicago happens to lie in the path of the Mississippi Flyway, a major north-south route for North America’s migratory birds, and the city’s lights can distract and attract them, leading to collisions with buildings.

In one night, there can be as many as 1,000 collisions at one building, according to . In response, Chicago and other cities on migratory routes have implemented “lights out” programs where buildings keep their lights off at night. Other cities, like Toronto, require that new construction implement certain “bird-safe” design aspects, like exterior lights that don’t point skyward and timers or motion sensors that switch interior lights off when the day is done.

This article was originally written for , which publishes daily news and analysis on cities. Learn more about Next City by following them on  and .

do you remember
all the times we鈥檝e been right here
knowing exactly enough to thrive
but slowly surrendering the garden
to private cruelties, made loud

every split rock holds 
one mother bent over one precious child 
amethyst joy, ruby sacrifice
she blesses the fragrant crown
how dare you not worship?

don鈥檛 you remember
with time they always lose this war
nothing is cooler than true love
the darkness is canal and portal
and we can all be doulas

repeat after me听
crush supremacy in the palm of your hand
and then bite down on your fist
the new world is coming through you
breathe in, yes

now scream

The ancient Greeks were just as sophisticated in the way they talked about love, recognizing six different varieties. They would have been shocked by our crudeness in using a single word both to whisper 鈥淚 love you鈥� over a candlelit meal and to casually sign an email 鈥渓ots of love.鈥�

So what were the six loves known to the Greeks? And how can they inspire us to move beyond our current addiction to romantic love, which has 94 percent of young people hoping鈥攂ut often failing鈥攖o find a unique soul mate who can satisfy all their emotional needs?

1. Eros, or sexual passion

The first kind of love was eros, named after the Greek god of fertility, and it represented the idea of sexual passion and desire. But the Greeks didn鈥檛 always think of it as something positive, as we tend to do today. In fact, eros was viewed as a dangerous, fiery, and irrational form of love that could take hold of you and possess you鈥攁n attitude shared by many later spiritual thinkers, such as the Christian writer C. S. Lewis.

Eros involved a loss of control that frightened the Greeks. Which is odd, because losing control is precisely what many people now seek in a relationship. Don’t we all hope to fall 鈥渕adly鈥� in love?

2. Philia, or deep friendship

The second variety of love was philia or friendship, which the Greeks valued far more than the base sexuality of eros. Philia concerned the deep comradely friendship that developed between brothers in arms who had fought side by side on the battlefield. It was about showing loyalty to your friends, sacrificing for them, as well as sharing your emotions with them. (Another kind of philia, sometimes called storge, embodied the love between parents and their children.)

We can all ask ourselves how much of this comradely philia we have in our lives. It鈥檚 an important question in an age when we attempt to amass 鈥渇riends鈥� on Facebook or 鈥渇ollowers鈥� on Twitter鈥攁chievements that would have hardly impressed the Greeks.

Like what you鈥檙e reading? We鈥檙e nonprofit and ad-free鈥攚e depend on readers like you. or today to keep 猫咪社区! going strong.

3. Ludus, or playful love

While philia could be a matter of great seriousness, there was a third type of love valued by the ancient Greeks, which was playful love. Following the Roman poet Ovid, scholars (such as the philosopher A. C. Grayling) commonly use the Latin word ludus to describe this form of love, which concerns the playful affection between children or casual lovers. We鈥檝e all had a taste of it in the flirting and teasing in the early stages of a relationship. But we also live out our ludus when we sit around in a bar bantering and laughing with friends, or when we go out dancing.

Dancing with strangers may be the ultimate ludic activity, almost a playful substitute for sex itself. Social norms may frown on this kind of adult frivolity, but a little more ludus might be just what we need to spice up our love lives.

4. Agape, or love for everyone

The fourth love, and perhaps the most radical, was agape or selfless love. This was a love that you extended to all people, whether family members or distant strangers. Agape was later translated into Latin as caritas, which is the origin of our word “charity.鈥�

C.S. Lewis referred to it as 鈥済ift love,鈥� the highest form of Christian love. But it also appears in other religious traditions, such as the idea of 尘别迟迟腻 or 鈥渦niversal loving kindness鈥� in Therav膩da Buddhism.

There is growing evidence that agape is in a dangerous decline in many countries. Empathy levels in the U.S. have over the past 40 years, with the steepest fall occurring in the past decade. We urgently need to revive our capacity to care about strangers.

5. Pragma, or longstanding love

The use of the ancient Greek root pragma as a form of love was popularized by the Canadian sociologist John Allen Lee in the 1970s, who described it as a mature, realistic love that is commonly found amongst long-established couples. Pragma is about making compromises to help the relationship work over time, and showing patience and tolerance. There is in fact little evidence that the Greeks commonly used this precise term themselves, so it is best thought of as a modern update on the ancient Greek loves.

The psychoanalyst Erich Fromm said that we expend too much energy on 鈥渇alling in love鈥� and need to learn more how to 鈥渟tand in love.鈥� Pragma is precisely about standing in love鈥攎aking an effort to give love rather than just receive it. With in the U.S. ending through divorce or separation in the first 10 years, we should surely think about bringing a serious dose of pragma into our relationships.

6. Philautia, or love of the self

The Greek鈥檚 sixth variety of love was philautia or self-love. And clever Greeks such as Aristotle realized there were two types. One was an unhealthy variety associated with narcissism, where you became self-obsessed and focused on personal fame and fortune. A healthier version enhanced your wider capacity to love.

The idea was that if you like yourself and feel secure in yourself, you will have plenty of love to give others (as is reflected in the Buddhist-inspired concept of 鈥渟elf-compassion鈥�). Or, as Aristotle put it, 鈥淎ll friendly feelings for others are an extension of a man鈥檚 feelings for himself.鈥�

The ancient Greeks found diverse kinds of love in relationships with a wide range of people鈥攆riends, family, spouses, strangers, and even themselves. This contrasts with our typical focus on a single romantic relationship, where we hope to find all the different loves wrapped into a single person or soul mate. The message from the Greeks is to nurture the varieties of love and tap into its many sources. Don鈥檛 just seek eros, but cultivate philia by spending more time with old friends, or develop ludus by dancing the night away.

Moreover, we should abandon our obsession with perfection. Don鈥檛 expect your partner to offer you all the varieties of love, all of the time (with the danger that you may toss aside a partner who fails to live up to your desires). Recognize that a relationship may begin with plenty of eros and ludus, then evolve toward embodying more pragma or agape.

The diverse Greek system of loves can also provide consolation. By mapping out the extent to which all six loves are present in your life, you might discover you’ve got a lot more love than you had ever imagined鈥攅ven if you feel an absence of a physical lover.

It鈥檚 time we introduced the six varieties of Greek love into our everyday way of speaking and thinking. If the art of coffee deserves its own sophisticated vocabulary, then why not the art of love?

This article originally appeared in . It has been edited for 猫咪社区! Magazine. For a more detailed discussion of the six loves, including a full list of scholarly references, please see Roman Krznaric鈥檚 book How Should We Live? Great Ideas from the Past for Everyday Life. 

The is a hub in this neighborhood with its rich, complex 鈥攁 place where residents, in better days, could gather for community meetings, cook meals that reflected their cultural diversity, play sports, practice yoga, and where young people could go before and after school for a flurry of activities, including Teen Late Night.

The governor鈥檚 order brought all that to a halt: 鈥淭here was a lot of 鈥榳hat do we do now?鈥� says Sam Chesneau, site lead at the community center.

At the same time, , a Seattle nonprofit organization on whose board Chesneau sits, was facing similar challenges in providing hot meals to those in need after its main benefactor shut down because of COVID.

鈥淲e started thinking, how do we transition this work into something we can actually do, given all the constraints?鈥� Chesneau says. 鈥淗ow can we provide that safety, where we鈥檙e not putting people in harm鈥檚 way or [at] risk, during the early stages when we were still figuring it all out?鈥�

Part of the answer lay not far away, where a South Park restaurant, , was pondering how it would continue amid a shutdown. Run by Czech and Filipino immigrants, Golas struck a deal with Wasat and the community center to prepare and box the hot meals, paid for by Wasat (鈥渕iddle鈥� in Arabic). A tent was set up outside the community center where residents, practicing social distancing, could pick up the meals.

This kind of coordinated mutual aid early in the pandemic has continued to expand, encircling the neighborhood to this day.

Over the past year, more than 20 food supply organizations have contributed in one form or another to providing hot meals to residents through the community center.

Neighborhood sharing tables that went up just before the governor鈥檚 order have expanded; some have been converted into sharing sheds and some have adjacent refrigerators. These pantries supply everything from pre-made sandwiches to socks, sourced not only from the broad network of organizations, but also from South Park residents themselves, who have helped contribute $20,000 (so far) to keep them stocked.

Local fundraising efforts to help South Park residents pay their bills and stay in their homes have also grown, along with the need, says Lashanna Williams, an active South Park resident.

And the , a program of the local nonprofit , has been keeping young people engaged through music and art, while the Urban Fresh Food Collective, another Cultivate South Park program, distributes free groceries every Thursday at the Mercadito (鈥渓ittle market鈥�), and provides free boxes of food every other Friday at the community center. 

鈥淪outh Park represents this idea of solidarity, not charity,鈥� said Jessica Gasperini, a longtime South Park resident who operates one of the five sharing stations, with an adjacent community refrigerator. 鈥淚t鈥檚 not about, you know, sitting in a position of power or privilege and doling out charitable deeds and goods,鈥� says Gasperini. 鈥淚t鈥檚 really about togetherness and locking arms and making sure that we all survive.鈥�

鈥淲e鈥檒l Come Out Better For It鈥�

A gritty, square-mile pocket of about 3,500 residents and Seattle鈥檚 most diverse neighborhood based on 2010 Census data, South Park is home to a patchwork of houses, factories, and warehouses along the Duwamish River in south Seattle. The pandemic is affecting people there much like it is people everywhere else: many residents are struggling with food insecurity and, without jobs, are struggling to pay their bills; too many have lost their homes to new development or eviction, and residents say homelessness has increased.

But the people of South Park know how to push back鈥攖hey have always known. Ignored over the years by those in power, sustained activism became part of their legacy. They鈥檝e seen and weathered many of these challenges before. COVID became just another one.

鈥淚t feels like we鈥檝e gotten so much closer,鈥� says Shawna Murphy, who moved to the neighborhood 17 years ago when she was pregnant with her first child. An active volunteer, she was among the first to set up a sharing table when the pandemic hit.

鈥淪ure, there are those who are isolating and crossing the street, but the rest of the people who have gotten close are very, very tight,鈥� she says. 鈥淭here鈥檚 so much community going on and I think we鈥檒l come out better for it.鈥�

Addressing Food Insecurity

A year ago, when the community center handed out that first round of hot meals, Chesneau says organizers had prepared food for about 100 to 150 people. When they ran out with people still in line, they decided to set time limits.

When groups supporting the neighborhood sharing tables learned about the weekly meals, organizers from both sides agreed to align their efforts in a mass-messaging strategy, where residents who came for one learned about the other.

鈥淎nd so it went from once a week to three times a week right away,鈥� Chesneau says.

During the holy month of Ramadan, the community center worked with Wasat to provide nightly meals to the area鈥檚 Muslim community. Neighborhood residents who came for the weekly hot meals were given boxes of produce or dairy supplied by Food Lifeline, a Seattle food bank supplier. Until June, when neighboring communities began creating their own meal programs, it was rare the center didn鈥檛 run out of food, Chesneau says.

Concern over food insecurity is not new here. That鈥檚 one of the things that Chesneau says equipped South Park to respond to this pandemic so effectively. 鈥淭hat is not to absolve [the system that caused the insecurity],鈥� he says, 鈥渂ut you have a special spirit and heart of community that looks out for one another because of it.鈥�

After the owners of Golas moved from Seattle, other local restaurants and catering services jostled for a chance to provide food at the center. And over the past year, Chesneau estimates, the program has worked with more than 20 such outlets, and distributed close to 14,000 free meals.

鈥淭here鈥檚 not necessarily any one organization that has spearheaded this; we wouldn’t have been able to do it without any of them,鈥� he says, ticking off a list of several groups the center has depended on, including Seattle Parks and Recreation, which owns the community center.

鈥淚t’s a real demonstration of what community can look like.鈥�

Sharing the Love

The sprawling collective of nonprofits, businesses, and volunteers that help feed people at the community center also advocates for and supports the neighborhood in other ways鈥攍ike providing shelf-stable and perishable foods, as well as dry goods, to the neighborhood鈥檚 five sharing sheds, tables, and two refrigerators.

Gasperini, who operates one shed, moved to South Park 15 years ago because it was affordable at a time housing prices in Seattle were skyrocketing. She loved the diversity and neighborliness of Seattle鈥檚 only river community, and while she didn鈥檛 volunteer, she felt a deep and instant connection to the neighborhood. When she was laid off from her job at a startup early in the pandemic, she felt the timing was right to get into something more meaningful.

Her husband, Ryland, a carpenter by trade, built sheds to replace two of the sharing tables that had gone up around the neighborhood, and built one at their own home, too. And when she learned about the movement, a national mutual aid effort that sets up refrigerators with food in neighborhoods across the country, she decided to add one alongside their shed.

鈥淭he truth is, we can fully stock these refrigerators in the morning and within sometimes a matter of two hours, they’re empty,鈥� she says.

Through the fridge organizers, Jessica Gasperini connected with , a global, all-volunteer movement that rescues grocery store foods that would otherwise be discarded. Food Not Bombs needed a way to transport all the food it was getting from local grocers鈥攎ostly from food co-op PCC at the time鈥攖o communities throughout the Seattle area. She owned a van, and in return for transporting the food across the city, she was offered half of the distribution for the South Park sheds.

The supply included things like prepared meals and pre-made sandwiches; foods with today or yesterday鈥檚 expiration dates that stores needed to move off their shelves; lots of produce that was slightly less than perfect. Less frequently, they鈥檇 get dairy, including eggs and milk, which were very popular at the South Park sharing spaces and 鈥渟o great to get,鈥� Jessica Gasperini says.  And very, very infrequently, frozen chicken or beef.

鈥淚 would say we were probably pulling 1,000 pounds of food per trip,鈥� she says. 鈥淚t was enough to keep the [sheds] well-stocked鈥� with a nice variety of foods. The other types of food we get are canned goods, any non-fresh foods. It made the sharing tables feel more like a curated grocery experience than a food bank.鈥�

Much like at the community center, that kind of coordination to keep the sheds fully stocked with everything from foodstuffs to feminine products, has been repeated again and again throughout the last year.

Food Lifeline, for example, which has a large distribution center in South Park, operates , allowing people once-a-week access to its warehouse, where they can load up as much as they can carry. Gasperini says supplies from Shop the Dock go directly to the neighborhood fridges.

鈥淎t any given time, we’ve got drop-offs happening somewhere between three and, like, five times a week,鈥� she says. 鈥淎nd there’s varying amounts and varying types of food. And then in between that, we have neighbors, and people鈥� the refrigerator [at] my house has a pretty steady stream of traffic, [with] people both dropping off and picking up. And I imagine they鈥檙e doing their grocery shopping and buying extra and stocking the tables.鈥�

Confronting COVID

But while keeping the fridges and pantries stocked has become less of a worry, the pantries have faced other challenges: animal intruders and the weather.

Williams is one of the original organizers of what, before the shelter-in-place order, had been sharing tables. She more than doubled her space when she converted her table into a shed.

She also added the neighborhood鈥檚 first refrigerator and enclosed that and the shed to fend off rodents and provide protection from the elements.

Williams, who is a death doula and massage therapist, says South Park residents have had a mixed response to the shutdown. 鈥淚n the ways 鈥� people in South Park [were] out and about much more often and gathering together in just daily behavior as a community, that had to stop,鈥� she says.

鈥淏ut in the ways that we can hold and support each other鈥� the things this community has done to keep people housed, to feed people, to keep electricity on, cleaning yards. 鈥� It鈥檚 just been amazing.鈥�

The flyer showed the woman smiling, with her husband and children. The husband had created the flyer and was calling for help finding his wife. But he gave no context about why his wife had disappeared, only that she was missing.

Danielle, a life coach for survivors of domestic violence, remembered the times she, too, had gone 鈥渕issing鈥� from her now-ex-husband. She鈥檇 been trying to escape his abuse. Once she鈥檇 packed her young son and daughter into her car and driven nearly 400 miles from Alameda County, California, to Los Angeles without telling him. He鈥檇 threatened to kill himself or her with a gun if she left, but she had to try to get to safety. Could the woman in the flyer be trying to escape a similar danger?

鈥淚t was a gut feeling,鈥� Danielle said. 鈥淚 guess as a survivor you just know the warning signs.鈥�

Partially due to the culture of guns in the United States, and their widespread availability, domestic violence is often linked to firearm use or the threat of it. Survivors speak about partners who have guns and threaten to use them. In fact, about 4.5 million U.S. women have been threatened with a gun by an intimate partner, and nearly 1 million have been shot or shot at during a domestic violence incident. When a person acting abusively has access to a firearm, they are five times more likely to kill their partner, researchers have found.

California has some of the strictest laws in the country aimed at protecting survivors from this danger. Yet enforcement of these laws has . A new law that took effect last year aims to make it harder for people who cause harm to skirt gun restrictions imposed under domestic violence restraining orders, and strengthens enforcement procedures required of family-court judges and the police.

The threat affects women of all backgrounds but is particularly acute for survivors of color, according to data from . (More than 40% of women and a quarter of men experience domestic violence during their lifetime, .) In particular, by an intimate partner compared to white women. These disparities reflect broader trends in intimate partner abuse and gun violence in communities of color, fueled by systemic inequities.

鈥淚t鈥檚 the most comprehensive firearms-relinquishment-implementation law in the country,鈥� said Julia Weber, director of the National Center on Gun Violence in Relationships at the St. Paul, Minnesota-based , a national legal resource for gender-based violence. Weber previously worked at the Giffords Law Center, where she helped draft the law, originally called .

Even so, advocates for domestic violence survivors say additional work is needed to protect survivors, particularly in a nation , where loopholes for obtaining guns abound, and at a time when access to unlicensed 鈥済host鈥� guns is becoming more prevalent. In this environment, family-court judges need to be knowledgeable about the dynamics of domestic violence and carefully weigh the safety of survivors when establishing restraining-order provisions that could still result in contact with the person who caused them harm鈥攕uch as through child-custody arrangements鈥攁dvocates say. Additionally, advocates call for better coordination between family courts and law enforcement to implement civil restraining orders. And there should be easier mechanisms to get civil restraining orders served by police (who are authorized to remove guns). In general, advocates call for a more effective and standardized response from law enforcement when responding to restraining-order violations, particularly if the violations involve guns.

Domestic violence restraining orders are a strong tool to help protect survivors from the threat of guns and other types of intimate-partner abuse, those who work in the field say. Yet given the gaps in gun regulations and enforcement, they cannot be regarded as the sole solution. Survivors still need to create safety plans for themselves and any other family members impacted by the abuse, and seek support from local domestic violence organizations.

An Unexpected Phone Call

Danielle鈥檚 hunch about the missing woman was right. Several months after she saw the flyer, Danielle got a call from a mutual friend who knew the woman. She鈥檇 been located in another state after running away from her husband, who allegedly threatened to kill her with a gun. Could Danielle provide the woman with life coaching? her friend asked.

For the next six months, Danielle talked with the woman regularly over the phone and via video chat. She used her own experiences with domestic violence, along with training and research, to help her new client understand the trauma she had suffered, rebuild her self-esteem, and weather ongoing threats of violence and manipulation from her ex. She also connected the woman to resources in her community to support her, including legal assistance to obtain a domestic violence restraining order, or DVRO.

鈥淚 had already walked that road before her,鈥� says Danielle. 鈥淚 felt like I was the one called to help her.鈥�

A DVRO is a civil court order designed to protect survivors of abuse, and, in some cases, their children and others from the person who is causing harm. The order can include a variety of elements, such as stipulations that the subject move out of the survivor鈥檚 home, child-custody or visitation arrangements, and prohibitions on going near the survivor鈥檚 workplace or school, or their child鈥檚 daycare. DVROs also ban the subject of the order from buying or possessing firearms or ammunition. This makes them a primary tool for diffusing the threat of guns in domestic violence situations.

DVRO gun prohibitions are powerful on paper. But the orders rely on the accused person to fully declare and relinquish all firearms in their possession to law enforcement or a licensed gun dealer, then submit proof to the court. Follow-up from court officials and law enforcement has long been spotty, . Competing priorities, stretched resources, disjointed enforcement systems, and, in some cases, lack of awareness among judicial or police officials about domestic violence dynamics and the serious threat guns pose to survivors, can undermine these orders鈥� effectiveness, advocates say.

鈥淥ur system on paper is great. In practice it has some gaps,鈥� says Allison Kephart, chief legal and compliance officer at WEAVE (When Everyone Acts Violence Ends), a Sacramento-based support center for domestic violence survivors. 鈥淲e have pretty good policy on restricting access to firearms, but we rely on disjointed and siloed systems to actually ensure that firearms get relinquished when somebody is prohibited, and that their ability to access firearms in the future while they remain prohibited is limited.鈥�

Advocates like Kephart hope that Senate Bill 320, which took effect in January 2022, will fix some of these problems. The law requires that, when law enforcement officials serve DVRO orders, they ask for and remove firearms from the restrained person. It also requires family courts to provide clear information to the restrained person on how to comply with the law, and to review DVRO case files or hold a follow-up hearing to ensure the person promptly submits proof that they鈥檝e relinquished their firearms and ammunition. If the person hasn鈥檛 complied, the courts must notify law enforcement immediately, which must in turn 鈥渢ake all actions necessary鈥� to obtain guns in that person鈥檚 possession.

Weber says she was particularly heartened that the California legislature and Gov. Gavin Newsom allocated $40 million in the state budget last year to help courts and law enforcement improve their handling of firearms relinquishment in civil cases, including domestic violence orders. Weber has also trained over 2,000 judges, lawyers, court staff, community members, and advocates on Senate Bill 320 since it took effect.

Because the law is relatively new, there isn鈥檛 data yet to show what its effects are, and it will likely take some time for the judicial system to fully implement the changes, Weber says. However, she and other advocates say they have heard directly from people in the judicial and domestic violence advocacy system that the law is already making a difference.

鈥淚t鈥檚 making a real impact,鈥� said Krista Col贸n, senior director of public policy strategies at the California Partnership to End Domestic Violence. 鈥淚t provides much more clarity for the courts and really strengthens the expectations for response and follow-up.鈥�

Remaining Challenges

The threat of guns in domestic violence situations is common. About 75% of survivors that seek help from WEAVE鈥檚 legal team believe that the person causing them harm has or could get access to a firearm, Kephart says. Most apply for a DVRO. These orders do often work to diffuse the threat of violence and help keep the survivor safe, but there are challenges with the system that need to be addressed, she adds.

One is that survivors must themselves ask law enforcement to serve the order to the person causing harm. That can be tricky, because sometimes only the sheriff鈥檚 department will take on this task, which could require the survivor to travel or wrestle with a clunky online system, and officials may not issue the order in a timely matter, Kephart says. Alternatively, survivors can ask someone they know or hire a professional to serve the order, but these individuals cannot ask the restrained person to hand over their weapons.

Another challenge is that judges have a lot of discretion over how they craft DVROs. This can be a good thing if the judge uses the flexibility to write comprehensive protections. But some judges don鈥檛 fully consider how a person causing harm could find ways to continue harassing the victim, especially through joint-child-custody or visitation arrangements, Kephart says. Another bill pending in the legislature, , would require courts to consider requiring virtual visitation if they determine that in-person visitation could pose a threat to the survivor鈥檚 safety. Weber says this should reduce the risk of a crime such as last year鈥檚 shooting in Sacramento of a chaperone and three children by the children鈥檚 father, who had been subject to a domestic violence restraining order.

Danielle pursued a DVRO several times during her struggle to leave her husband. But she had difficulty collecting documentation, filling out the paperwork, and waiting for a court hearing, all while under the threat of harassment and violence.

鈥淚t was exhausting,鈥� she says. 鈥淭his was years of trying to leave this person, years of documentation, taking notes, years of advocating for myself. A lot of victims, quite frankly, don鈥檛 have the resources or the energy.鈥�

Now Danielle helps her clients鈥攍ike the one who ran away from her husband鈥攑repare for and weather the challenges of pursuing legal remedies. Although it can be a struggle to obtain one, restraining orders can bring great relief, she says. In her case, the biggest help was that she obtained full custody of her young son, with no visitation rights. Her older daughter was named as protected in addition to herself, and her ex-husband was ordered to stay away from the family. Although it didn鈥檛 end her worrying completely, the order did give her space to breathe and begin the healing process, she says.

鈥淚t gave me a chance to exhale and look into what my next steps were without having that constant harassment and emotional strain,鈥� she says.

Even so, Danielle agrees that there needs to be better enforcement of DVROs. But, ultimately, a DVRO or any legal order cannot be relied on as the sole strategy for protecting a survivor of domestic violence from guns or other threats from the person causing harm, Kephart says. Advocates at WEAVE also help survivors develop , which can include installing cameras outside their homes and changing the locks, changing and unlisting their phone numbers, and making sure their children鈥檚 school or daycare provider knows who is allowed to pick up their children.

DVROs are 鈥渘ot a magic wand, they can鈥檛 fix everything,鈥� Kephart says. 鈥淎t the end of the day they鈥檙e just a piece of paper.鈥�

Today, Danielle is proud to be moving on with her life and to be helping other survivors move on with theirs. In addition to her life-coaching business, she has written a book about her experiences and started a nonprofit organization that offers workshops on topics related to domestic violence. She also collaborated with the California Partnership to End Domestic Violence on a newly released toolkit for survivors and advocates that explains the civil legal options available to victims of abuse, including DVROs.

As for the woman Danielle supported, who also escaped a violent relationship, she is now 鈥渁 completely different person,鈥� Danielle says. She divorced her ex-husband, purchased her own home, obtained a new job, and reunited with one of her children.

To other survivors of domestic violence, Danielle says it鈥檚 important to seek help and to know you are not alone: You do not have to stay in a situation that is not healthy for you and your children.

Although leaving an abusive relationship can be challenging, Danielle is encouraging: 鈥淐hoose to focus on the light, and stay present with what we can control鈥攖hen each day you will become stronger and more empowered,鈥� she says. 鈥淥ne day, you will look back and say, 鈥業 made it.鈥欌€�

The California Partnership to End Domestic Violence recently launched this online toolkit to help survivors and advocates make decisions about how best to proceed in domestic violence situations, especially when guns are an issue: .

If you or someone you know is experiencing domestic violence, contact the  at 1-800-799-7233 for support and referrals, or text 鈥淪TART鈥� to 88788. You can also find contact information for your local domestic violence program .

For Native Americans and Alaska Natives, the Stronghearts Native Helpline at 1-844-7NATIVE (762-8483) also provides 24/7 confidential and culturally appropriate support and advocacy for survivors of domestic and sexual violence. A chat option is available through their website.

This story was produced by the .

An urban community farm in Tucson? Guess again. This isn’t just urban permaculture—it’s a food bank.

Food banks across the U.S. are increasingly taking on added responsibilities.

In Pima County, which includes Tucson,  is food insecure—slightly above the national average. Food banks, including this one, the Community Food Bank of Southern Arizona, have been starting gardens and farms where they teach people to grow their own food. These are local, small-scale initiatives that teach “food literacy”—nutrition, cooking, budgeting, grocery shopping and gardening—to communities that suffer from food insecurity or simply a lack of fresh produce.

This is a common concern, and food banks across the U.S. are increasingly taking on added responsibilities of not just providing food to low-income communities, but also addressing health issues associated with food insecurity, such as malnutrition and diet-related illness like high blood pressure, type-2 diabetes, and obesity.

Las Milpitas—a name chosen by the community which means “little fields” or “little gardens” in Spanish—is a few miles from the food bank’s primary distribution and services center. The farm is in a primarily Latino neighborhood on Tucson’s west side, and closely connected to two nearby mobile home communities. It’s also a four-mile drive from the nearest grocery store.

On one part of the six-acre farm, three full-time paid staff members grow produce that later gets included in hot prepared meals for food bank clients or is sold to sustain the farm at the food bank’s SNAP- and WIC-eligible local farm stands.

But the heart of Las Milpitas is everything set aside for free use by the community, says Elena Ortiz, Las Milpitas’ Farm Engagement Manager and Advocacy Coordinator. There are around 60 individually-assigned plots, a shared community plot, a greenhouse, a composting toilet, and an adobe oven. At times the farm borrows other equipment, such as a solar dehydrator or a solar oven, which are used in cooking demonstrations and native plant workshops.

Gardeners plan their own plots and take home what they grow, Ortiz says. And they come back for other events such potlucks and yoga classes. Local elementary schools also use Las Milpitas as an outdoor classroom to teach a food literacy curriculum about nutrition, plants, gardening, and cooking.

And since there are no parks in the neighborhood, Ortiz says, people also come to Las Milpitas simply to enjoy the green space.

The gardeners come from all over Tucson. Most of them are women, and many are recent immigrants. Many have never gardened before. Among the watermelons and weeds, some are reconnecting with an agricultural heritage, Ortiz says.

“A lot of our gardeners will remember their grandparents in Sonora who had a ranch, and they’ll remember them growing food,” she says.

Partnerships between food banks and local agriculture are on the rise.

Partnerships between food banks and local agriculture are on the rise. Food banks are farming produce, recovering (or “gleaning”) agricultural surplus straight from the fields, building urban demonstration gardens and seed libraries, and teaching classes in underserved neighborhoods for those who want to grow food in their backyards or in balcony bucket gardens.

Domenic Vitiello, an assistant professor of City Planning and Urban Studies at the University of Pennsylvania, the changing role of food banks in regional food systems. To put these agricultural initiatives in context, he says, we have to balance two considerations. One is the scale of need—the millions of pounds of “emergency” food that a food bank has to provide. The second is that the traditional food bank structure reinforces dependency on the industrial food system, which also is able to take advantage of tax breaks and low wages, thus perpetuating deep economic inequality.

An example of a different agricultural approach is , which serves seven North Carolina counties, recovering and gleaning about 6 million pounds of food a year that would otherwise have gone to waste. The Food Shuttle also runs a 10-acre production farm, which provides 18,000-30,000 pounds of food per year for its clients—just a fraction of its total distribution.

“They’re building skills—basic capacities for people to feed themselves.”

But some of that land, says Farm Manager Fred Baldwin, is set aside exclusively for 12 Burmese Karen refugee families who grow food for their own community. The Food Shuttle has also transformed unused lots into two small urban gardens in low-income and historically Black neighborhoods of Raleigh and Durham, where they teach a five-week backyard gardening course called .

Vitiello says that while community gardens like these and Las Milpitas can’t feed large numbers of people, they can strengthen poor communities to be just as healthy and food secure as any.

“They are not producing anything resembling the scale of the big industrial gleaning programs,” Vitiello says. “They’re building skills—basic capacities for people to feed themselves.”

There are other ways to measure a food bank’s successes than the quantity of food it gives out.

Erik Talkin, CEO of the and author of the blog , is supportive of food banks like the Community Food Bank of Southern Arizona who have successfully pioneered complex approaches.

“They wanted to focus on these programs that would build long-term food literacy as opposed to just short-term giving people food. They realize that they can build a bigger and bigger food bank, but it’s not actually solving the problem they’re trying to deal with.”

It takes paid staff and a lot of networking for a food bank to create a thriving community garden like Las Milpitas. “They’re doing some good things there that we at the moment don’t have the resources to be able to achieve,” Talkin says.

And Ortiz believes that a resilient community is worth the work.

“That’s why our food bank has been really interested in growing, because gardens provide this beautiful space for those connections to happen,” she says.

The physical layering of utopian life on particular plots of land is not so unusual in the United States. Once an 18th- or 19th-century utopian community had cultivated a tract for communal living, unsurprisingly, the land was primed for the next generation鈥檚 version.

The weird thing is you don鈥檛 have to do that much digging before you hit another stratum. You鈥檒l often find that, for instance, a permaculture intentional community in rural Oregon today bought the land from the Jesus People Shiloh Youth Revival in the 1980s, and that they bought it from some descendants of the Aurora Colony, and so forth. There have, to be clear, been a lot of such experiments, especially in the mid-19th century.

Ralph Waldo Emerson famously wrote a letter to Thomas Carlyle in 1840, saying, 鈥淲e are all a little wild here with numberless projects of social reform 鈥� Not a reading man but has a draft of a new community in his waistcoat pocket.鈥� He wrote this letter while he himself was experimenting at Brook Farm in Western Massachusetts, and while the country was entering into what writer

There is a lot of layering in the story of utopianism in America, and the general thrust of that unfolding sounds a little like this:听It鈥檚 1681 or 1763 or 1830. So-and-so Jansson or Van Wort of somewhere-or-other, Sweden or Germany or England, decides the Lutherans, or the Anglicans, were sent by the devil. There should be no mediation between man and God, no tyrant king bequeathing spiritual access. So he promptly breaks away to create the Community of True Inspiration or God鈥檚 Real People or We are the Realest Ones, etc.

He and his small band of followers, who by then have adopted some kind of dress and mode of worship to distinguish themselves, promptly have a mass burning of Lutheran (or Anglican) hymnals and literature. Simple enough. They hang out in Northern Europe. They live in a shared shack, or a final vestige of the commons. But then that guy (Jansson, Van Wort, etc.) runs into so-and-so Bartlett or Godrich or Randolf who, himself, is in the middle of trying to reform the Dutch Reformed Church, but having no luck reforming the reformed, they join forces. They bestow prophecies.

The blending of their two groups produces a new name, and a new theology: the Zoar Community or the Harmony Society or the Most Divine of the Most Divine. They believe in adult baptism or ecstatic dancing or that the end is nigh or that no one should speak in church, but often, above all, they believe in communal living, of a life where 鈥渁ll things are held in common鈥� as modeled in the book of Acts after the crucifixion, when Christ鈥檚 followers give up everything they own and go underground for 40 years or so, living in symbiotic communitarianism out of sight of the Roman Empire.听

So, it鈥檚 the early 19th听century now, and the new group鈥擹oar or Harmony or what-have-you鈥攅mbarks to scope out land for a settlement in the New World, and for no reason I can figure out, they dock in New York, but often or sometimes go all the way to central Pennsylvania or Illinois. There, they claim a tract of land in a snowy, muddy lowland near a Swedish Methodist church that they already think is heretical, and they build semi-underground log cabins, and everyone comes out from Switzerland or Sweden or Germany, tons of people dying on the way on the ship, and tons of people dying in those freezing cabins, trying to live out their imagined reconstruction of first-century 鈥渂iblical鈥� communism.

But then there are schools! Tanneries! Businesses of all stripes, operating in a sort of small-scale divine socialism, for a little while at least鈥攂ut then something goes wrong (something always goes wrong): cholera or smallpox or they don鈥檛 make enough money or a violent husband or theological or ideological disagreements or (usually) the commune leader says that God says that he can have sex with whoever he wants, or that everyone has to stop having sex altogether.

Some people die, others run off to join a different utopian community, sometimes (and not infrequently) to the Shakers, who by then have colonies all over the Northeast, though Mother Ann herself has died. Others run to cities, others stay in the falling-apart community because they don鈥檛 know what else to do and eventually a town forms around them, and they cash in on that, they incorporate, and within a generation the utopian project is erased, assimilated. It鈥檚 just Yellow Springs, Ohio, or New Harmony, Indiana, or Aurora, Oregon. Or it鈥檚 just the Amana Corporation or Oneida Flatware & Silverware.听

Utopia-making emerges in force especially during times of economic and social precarity.

But at the early stages of the community鈥檚 unraveling, before things have really fallen apart, so-and-so Splendorf or Gilbert arrives one day. He鈥檚 an American, born and raised. He looks on at the tannery, the communal dinners, the women鈥檚 clothing, and he says,听My, my, this seems like a really cool thing you鈥檝e all got going on here, or he says,听The Lord is telling me I must start my own community, a corrective to this one!听(while just offstage or behind him someone is puking from a horrible flu, or others are coming to blows about the doctrine of total depravity, or the tannery is burning down).

But first he literally tours utopian communities for a decade (this happens a lot), joining them and dropping out, or sometimes just dropping in for a bit鈥擶oman in the Wilderness, Bohemia Manor, Mill Creek鈥攖hen breaks with them, or begins to revise their beliefs and leaves when he finds he can no longer conscionably carry on. He goes to the woods, defeated, and starts anew: a slightly different take on prayer, on agricultural practices, on belief about the holy spirit or sex or which rules the leader of the group is exempt from. Living with all things in common remains a constant, but the rest is up for grabs.

Then, just like that, unbidden, people kind of form around him, developing a sort of celibate utopia that lives and thrives (in a way) for five years or one year or eight years. And then another guy visits this new commune, and says,听My, my, this seems like a really cool thing you鈥檝e got going on here 鈥�听But then it鈥檚 the late 19th century, early 20th century even, and before that new guy can get his utopian community up and running, his socialist Transcendentalist communitarian settlement of whatever type, the United States is flush, wealthy, and everyone鈥檚 like, 鈥淲ho needs communitarianism? We鈥檝e got houses and bread now!鈥澨�

Utopia-making emerges in force especially during times of economic and social precarity鈥攁fter wars, depressions, natural disasters, sexual revolutions. And when a utopia issues from a Christian framework or tradition鈥攚hether during the Second Great Awakening, or today in liberationist or fundamentalist communities alike鈥攊t almost unilaterally grounds the understanding of that divinely pure or sanctified life as something that takes place only by a life lived in community. Almost always, Christian or not, the American utopia vanquishes the nuclear family, the blood tie, the marriage, often sex, so that we are only, all of us, strangers and pilgrims together on the same path. 

But it is also often the case that when we are talking about American utopian communities鈥攚hen we look at a shelf in the library dedicated to the topic, for instance鈥攚e鈥檙e framing it as a historically specific phenomenon, something that happened in the 19th century, largely in Western New York and its outlying colonies, that took the form of several particular movements, many of which passed through a particular piece of property at one point or another. And it is also often the case that, under that rubric, we鈥檙e talking almost exclusively about white Protestants, or people who have at least gone rogue from a European Protestant theology.

And it seems to me that the life those communities created, which we call American utopias, was more or less a paltry mimesis鈥攃onsciously or not鈥攐f the kind of life that North American Indigenous people had been living on that land for centuries and were, at that time in the mid-1800s, defending with their blood and bodies.听

For this reason, perhaps, these European-descendant American utopian communities are inherently tragic not only because they are always, every single time, doomed to failure鈥攁nd often quick failure, sometimes disastrous failure. They are tragic because they rarely consider at whose expense they exist, or what kinds of privileges they鈥檝e been afforded to position themselves as makers of a 鈥減erfect鈥� place. Do the makers of these communities forget, and always imagine that this time, unlike the others, they鈥檒l last forever? Or are they like me, a little romantically obsessed by the will to create an ideally communal life that I know will ultimately perish, that is only here for a second, that will ultimately be proved in time to have been the totally wrong thing, and yet which I must strive after anyway? 

Despite all my certainty of folly, I am also sincerely seeking models, skimming communities鈥攂oth historical and contemporary鈥攆or what might be useful or replicable in my own life, or in the lives of my friends, or (however crazy this sounds) more generally for my country people in all of their variety. What are the constant forms, the possible architectures, of developing a happy or ethical life under late-stage capitalism? What do you have to give up, or reduce, or invent? What does a shared ideology provide, and what does it threaten when it becomes the bedrock upon which the project exists? Could the basis of a utopian community be purely material then鈥攃ohousing, school, organization, residency? Or just a shared car and washing machine? And what about the horror of people not cleaning up after themselves?

It is a question that has been pressing at my friends and me since our early 20s, but which has become painfully urgent as the rapid piling-on of adulthood has taken place, and especially as my husband and I became young caretakers of his still-young, but suddenly profoundly disabled, father in one of the most expensive cities in the world. When we passed the two-year mark of caring for my father-in-law, it had become extremely clear that, since we do not come from a multigenerational household, nor belong to a dense city block or other organic forms of interdependence, our lives will otherwise be (and already are) shaped by all the forces in the United States that, if left to work uncontested, will ebb toward isolation.听

But every time I think about it for more than one minute, it鈥檚 not clear that I鈥檇 ever be a very good communard. I especially balk at all of my dreams of utopia because I am actually not a very attentive family member. I rarely make it back to the West Coast. I take forever to return my friends鈥� phone calls. I google my book all the time to see what people are saying (not much). I let my mother-in-law and sister-in-law do all the cooking on Thanksgiving. I can be extremely lazy, not leaving the house for days鈥攋ust writing, eating, reading, working from home, watching TV.

I have been in a more or less monogamous relationship since I was 19 years old, which became my life鈥檚 primary infrastructure鈥攁nd while I think, at least, I鈥檝e been a pretty decent partner for a decade, I am beginning to feel despair about how the whole thing can sustain itself at a moment when my husband needs me most鈥攖hough he claims to need me for nothing. How do you learn to be the kind of person who could make a communal arrangement, much more complex than a marriage or a nuclear family, work?听

This edited excerpt from听听by Adrian Shirk, Counterpoint Press (2022) appears with permission of the author and publisher.听

Jones pauses and clears his throat, wiping his eyes. 鈥淚 get emotional about it,鈥� he says quietly, looking down at the black Labrador retriever sleeping at his feet. 鈥淢idnight has done so much for me. I really don鈥檛 know what I鈥檇 do without him.鈥�  

serves individuals experiencing homelessness in Upper Darby, a township on the outskirts of Philadelphia. It is the only shelter in the area to welcome guests along with their 鈥淭hree P鈥檚鈥�: pets, possessions, and partners of all genders. 

A few years ago, Jones was in a car accident that left him unable to work. As a result, he lost his apartment and began living on the streets. During this time, Jones left his service dog, Midnight, in the care of a friend. Every day, for months, he would take the bus to visit Midnight.  

In addition to his role as an emotional support dog, Midnight is also trained to care for Jones in the event of a medical emergency. Jones suffers from hypertrophic cardiomyopathy and relies on Midnight to bring him his medication and phone during cardiac episodes when Jones is unable to stand.  

When Jones finally secured a spot at a shelter that allowed service animals, he found the staff to be confrontational about Midnight鈥檚 presence, despite the dog鈥檚 status as a service animal. Eventually Jones was evicted from the facility. 

After sleeping in a storage unit for two nights, Charles and Midnight visited the Breaking Bread Community Shelter in search of food. They were immediately invited in for coffee and a meal. Soon after, Charles and Midnight secured a room in the shelter, shared with two other guests, and were able to move in.  

鈥淭he first day we came, the staff called us by name, even Midnight,鈥� Jones shakes his head, emotional once again. 鈥淭hey told me they had my back. I felt like I was in heaven.鈥�

Once securing a bed at Breaking Bread, Midnight was given vaccines and other medical care from volunteer veterinarians in the community. 鈥淚 owe this place everything,鈥� says Jones. 鈥淲e鈥檝e got a whole new family here.鈥� 

An Impossible Decision

鈥淎pproximately 10% of people experiencing homelessness do so with service animals, emotional support animals, or companion animals,鈥� according to the . However, very few homeless shelters currently accept pets. This means that many unhoused people are forced to make the often impossible decision between safe shelter and staying with their pet. 

Additional research by the Alliance indicates that many choose to remain with their animal, even if that means sleeping on the street or staying in a violent situation. According to the , 鈥�50% of domestic abuse survivors would not leave an abusive home unless they could take their pet with them.鈥� 

Biana Tamimi, a veterinarian and the director of shelter medicine at the Animal Care Center of New York City, believes this decision is only natural. Tamimi explains that for many people, an animal is more than a pet鈥攖hey are a member of the family. Over her years of veterinary care in New York City, Tamimi has witnessed animals providing critical companionship, comfort, and trauma healing to people experiencing homelessness or poverty.  

鈥淚 have met so many unhoused people who say there鈥檚 no way on Earth they would give up their animal. [Their pet] is their reason to get up in the morning, a reason to go out and look for food,鈥� Tamimi says. 鈥淲e all know what it feels like to come home after a hard day and pet your cat or have your dog jump on your lap and give you licks. Imagine in the darkest time of your life, having a companion that鈥檚 been with you for years suddenly taken away. We never want that to happen to people.鈥�

The Interconnected Health of Pets and their Owners

In addition to her role at the Animal Care Center of New York City, Tamimi serves as a co-lead at , an organization that believes the well-being of the pet and the owner are inextricably linked. At pop-up street clinics across the nation, the Coalition provides free veterinary care to pets of people experiencing or at risk of homelessness, while also offering social services and medical resources to owners. This model of care is known as the 鈥溾€� approach. Attributed by many to 20th-century veterinary epidemiologist , the One Health movement has gained popularity in recent decades. 

鈥淥ne Health is a way of providing care that recognizes the connection between human health and animal well-being,鈥� Tamimi explains.  鈥淧ractically, what these clinics look like is a veterinary team working alongside human health care providers. For example, I鈥檒l be examining the animal, and maybe there鈥檚 a psychiatrist with us, and we鈥檙e having a conversation as a group.鈥�

Tamimi shares that, often, the focus of the appointment is first on the pet, utilizing the human-animal bond to help the owner feel comfortable. 

鈥淧eople want their animals to get the care they need,鈥� Tamimi says. 鈥淥ne of the biggest benefits [of One Health clinics] is getting someone through the door who might have a lack of trust with housing providers, with health care. 鈥� We use that bond with the pet to facilitate the human getting care for themselves as well.鈥� 

At a recent New York City pop-up clinic, Tamimi recalls a man who brought his cat to the clinic, concerned that she was developing asthma. Through conversation with the man, Tamimi and the volunteer social workers at the clinic discovered he was a heavy smoker, which was likely causing his cat鈥檚 breathing issues.

鈥淭hat was a great opportunity to discuss how the owner could smoke a little less,鈥� Tamimi says. 鈥淗e didn鈥檛 realize his smoking was causing this problem, and he said he didn鈥檛 want to do that to her. 鈥� Our team was able to say, 鈥楲et鈥檚 tackle this problem together, because you鈥檙e going to be helping your cat and 测辞耻谤蝉别濒蹿.鈥欌赌�

To Tamimi, this illustrates the effectiveness of the One Health model and the power of the human-animal bond to positively influence a person鈥檚 life. 

鈥淧ets keep their owners grounded. They keep them well, especially in really dark times of isolation and stress,鈥� she continues. 鈥淗umans can get through the most challenging times of their lives because they have an animal there with them that relies on them. 鈥� That interconnectedness is really valuable.鈥�

In Texas, a Safe Space for Pets and Owners

in Dallas is also working to keep unhoused people with their pets. The nonprofit has 20 dog kennels in its 750,000-square-foot center, along with shaded walking areas and a full-service grooming room. Recovery center clients are also provided with free dog food, leashes, and toys. 

David Woody, a social worker and the president and CEO of The Bridge, says that in his experience, if a client is offered a spot in a shelter that does not welcome their animal, they often refuse services.

鈥淗ere at The Bridge, we鈥檝e developed a real sensitivity to that kind of experience,鈥� Woody says. 鈥淭hrough the kennel program, we offer dogs a safe space while the guest gets their needs met as well. We take care of the whole person, and the canine is just as important as anything else.鈥�

Channon Cavazos, kennel manager at The Bridge, explains that often, guests open up to her about their trauma while talking about their pet. This allows the team at The Bridge to better serve the client鈥檚 individual needs. 

Cavazos says there is nearly always a waitlist for The Bridge鈥檚 pet-friendly shelter services. In the coming years, she hopes to expand the kennel program, allowing more Dallas residents to receive shelter without being separated from their animal. 

鈥淭here are people who will wait on our waitlist for weeks at a time because they can鈥檛 part with their animals. A lot of these people have been through a lot. The last thing they want to do is get rid of their animal,鈥� Cavazos says. 鈥淚 would love to see a kennel in all homeless shelters so that no one has to part with their animal to receive shelter.鈥�

Mobilizing the Public

a nonprofit working across all 50 states, provides food and medical services to the animals of unhoused people. Since it got its start in 2008, the nonprofit has provided more than 2 million pounds of food as well as medical care to more than 30,000 pets.  

鈥淲hen we first started, our clients would tell us they were giving their pet half of whatever food they could find,鈥� says founder Geneveive Frederick. 鈥淎nd we knew this wasn鈥檛 healthy for the person or the pet.鈥�  

Feeding Pets of the Homeless relies on donation sites across the country to collect pet food and supplies from the public. These donation sites are located in hair salons, doctors鈥� offices, pet shops, and other small businesses. The food and supplies collected then gets distributed by social service centers like domestic violence shelters and food banks. Feeding Pets of the Homeless also offers financial support to unhoused clients whose pets need urgent medical care. 

The majority of the organization鈥檚 clients are women, Frederick shares. She highlighted that, many times, unhoused women are at and rely on their animals for safety.

鈥淓ven the smallest dog can alert them that danger is coming,鈥� she says. 

Additionally, she mentions the among people experiencing homelessness. For some people, pets can provide a reason to seek help, even when they feel hopeless.  

鈥淔or many [unhoused people], they鈥檝e lost all hope 鈥� but they reach out to us because they feel responsible for their animal,鈥� Frederick says. 鈥淧rograms like ours can give people hope that somebody out there wants to help them, and their pet, in their time of need.鈥�

鈥泪蹿 This Is Us and Modern Family came together, it would be us,鈥� Gasby told The Washington Post. Gasby鈥檚 daughter, Dana, agreed, telling The Washington Post that she鈥檚 glad her father met Lerner. 鈥淲hen he told me, I was like, Thank God. I鈥檓 happy,鈥� she said.

Gasby鈥檚 admission ignited a , especially on he was shepherding for his wife鈥檚 lifestyle brand. 鈥淸Lerner鈥檚] having her lifestyle funded by [this] Black woman, and this white woman didn鈥檛 have to build a thing with you,鈥� that has accrued more than 215,000 views. When Gasby appeared on in 2019, the hosts pilloried him for moving Lerner into the home he shared with Smith. Co-host Sunny Hostin, who was friends with Smith and Gasby, said that moving Lerner in was 鈥渧ery disrespectful,鈥� to which Gasby replied, 鈥淚 am keeping my vows to protect and care for [Smith],鈥� who he said encouraged him to move forward with his life after her diagnosis. 鈥淲hen we got the diagnosis at Mount Sinai 鈥� she stopped me, put her hand on my arm and 鈥� she said to me, 鈥業 want you to go on,鈥欌€� Gasby said. 鈥淚鈥檓 not doing anything we didn鈥檛 [discuss].鈥�

While many were upset that Lerner was helping Gasby care for Smith, who died in 2020, this complicated love story is an example of an extended family coming together to combat Alzheimer鈥檚, of our time. It鈥檚 also a starting point for an honest conversation about the emotional needs of those caring for loved ones with incurable diseases.

I think about caregiving a lot. I鈥檓 a healthy 73-year-old African American woman, and my husband, Joe, is a 76-year-old diabetic and a cancer survivor. The aggressive chemotherapy and radiation that saved his life 25 years ago and . He exercises daily, takes all his meds, and remains mentally sharp鈥攁nd he鈥檚 also at high risk of developing some form of dementia. I鈥檓 haunted by the possibility that I may one day have to be his full-time caregiver. 

At its best and most challenging, marriage is about spouses caring for one another, something Joe and I have done for 33 years. During Joe鈥檚 cancer journey, I insisted that his family recognize my need for emotional support. They eagerly responded to my call for help and buoyed my spirits: Joe鈥檚 relatives asked me how I was doing when they called to check on him, which had not happened before. And, in the last stages of Joe鈥檚 treatment, his parents opened their home to him so I could live in Richmond, Virginia, three days a week and teach at Virginia Commonwealth University. 

Though Joe鈥檚 cancer has been in remission since 1996, we鈥檝e still talked about death, what we want, and what we don鈥檛 want. He has told me that if he declines beyond recognition he wants me to 鈥渕ove on.鈥� Still, there鈥檚 nothing that can prepare you to watch the decline of your life partner while also being their administrator, appointment maker, chauffeur, cook, nurse, and doctor.

Over the past several years, I have watched my oldest friend care for her bedridden mother while also taking time for herself. Her mother worked for the federal government for 30 years, so my friend depended on the generous resources of her mother鈥檚 pension, Social Security, and Medicare to provide 24-hour care when needed. At the same time, I have seen another friend struggle with indifferent doctors and incompetent nursing staff as she tries to piece together support for her husband while he endures the final stages of Parkinson鈥檚 disease.

Caregivers are a national resource and a national treasure, but , , support groups, and time off that they deserve. They鈥檙e not recognized as individuals who have often quit their jobs, changed the direction of their lives, and given up their dreams to support someone else. 

The statistics are stark: According to , 53 million people in the United States are caregivers for someone who is chronically ill or disabled. Of those, have provided unpaid caregiving to an adult aged 50 or over. who are caregivers is increasing every year, , and 19% of adults over the age of 65 are caring for a friend or family member. All this caregiving, , takes place against the backdrop of a health care system that鈥檚 , difficult to manage, and does little to .

While nearly every state provides , it often isn鈥檛 enough to cover all the costs of care, including home health aides, health insurance, medical transport, and medications. , , and help to fill in the financial gap, but most older people age in their homes, because . In 2022, began attempting to address these concerns with its , which highlights nearly 350 actions various federal agencies can take to better support family caregivers and 150 additional actions that other levels of government can adopt.

Some of those actions include access to AmeriCorps Seniors, which offers short-term respite care to family caregivers in need of a break; updating rules for the Centers of Medicare and Medicaid Services to ensure family caregivers are involved in hospital discharge planning for their loved ones; and leveraging Medicaid funding to ensure caregivers receive better pay and the tax credits that are available to them. But as caregivers, particularly older caregivers caring for other aging people, wait for these actions to improve their lives, they鈥檙e taking respite care into their own hands.

There鈥檚 a saying among Black American Christians that 鈥淕od never gives you more than you can handle.鈥� Throughout my life, my acceptance of that assertion has waxed and waned, but 76-year-old Regina Wells, a retired case manager living in Washington, D.C., has an unshakable belief in that adage. And yet, her resilience, generous spirit, and deep religious faith were tested as she served as a full-time caregiver for her husband and her mother for more than a decade.

Given her career, Wells was accustomed to stress, but nothing could鈥檝e prepared her for the rigors of being a full-time caregiver. Brough, her husband of 45 years, suffered a series of strokes over the course of three years. He also had high blood pressure and gout, for which he had resisted treatment, and over time, he developed congestive heart failure and sleep apnea. 鈥淗e was a terrible patient,鈥� Wells says. 鈥淗e didn鈥檛 follow the doctor鈥檚 instructions. 鈥� He would insist that he was OK, that he didn鈥檛 need help, and then fall or slide off the bed.鈥� 

After Brough鈥檚 last stroke in 2022, Wells realized she could no longer care for him on her own and that he would receive better care in a nursing home. The same year, Wells鈥� mother had several strokes and was diagnosed with breast cancer. Studies have shown that before those they鈥檙e caring for. That can be partially attributed to 鈥�,鈥� a condition that can lead to physical, mental, and emotional exhaustion. As a result, caregivers are at risk for developing many chronic illnesses like diabetes, heart disease, and high blood pressure. Or, as told me, 鈥淗ealth problems often go unaddressed in caregivers.鈥�

Wells beat those statistics. However, caretaking still took an enormous toll on her. While her friends, siblings, pastor, and children offered to help, she didn鈥檛 want to disrupt their lives by sharing the caregiving responsibilities. 鈥淧eople were telling me to take care of myself,鈥� she says. 鈥淭here were many offers of help that, looking back, I wish I had accepted. I cried a couple of times, but I wouldn鈥檛 break down. I felt that I couldn鈥檛.鈥�

Eventually, Wells reached a breaking point. 鈥淚 remember one day when I felt so drained and tired and I did break down,鈥� she says. 鈥淚 told them both, 鈥業 can鈥檛 take care of you.鈥� I screamed in frustration and then I snapped out of it. I came back to reality.鈥� For Wells, that reality included a diagnosis of B-cell lymphoma followed by six months of cancer treatments. 鈥淟uckily it was a nonaggressive cancer, and I didn鈥檛 have a bad reaction to the monthly chemotherapy treatments,鈥� Wells says. 鈥淲hen I鈥檇 come home from the treatments, I鈥檇 take my nap when my mother napped. I adapted to her schedule.鈥�

Wells developed cancer in 2021, a year before Brough died. Her mother died in 2023 at the age of 95. Wells is now a widow and a motherless child, grieving her mother and her husband in the same apartment in Prince George鈥檚 County, Maryland, where she and Brough raised their children. 鈥淚 miss them both,鈥� she says. 鈥淚 talk to them constantly, just like they are still here. But I am relieved, relaxed, and peaceful. It鈥檚 like they both had to die for me to finally get some rest, to get some time for myself.鈥�

Wells is a good wife, a good daughter, and a 鈥渟trong Black woman,鈥� convinced that she had no time for tears, that vulnerability was a weakness, and that her needs and well-being were trumped by the needs of her family. To accept too much help would have undermined her sense of being capable. 鈥淭oday I would tell anyone going through what I went through to ask for help, accept it when it is given, and take care of yourself,鈥� she says.

Kimberly Fleming, a licensed clinical social worker, social psychologist, and certified telemental health provider, is doing everything she can to preserve her mental and physical health as she cares for Ben, her husband of 27 years, who was initially diagnosed with mixed dementia (Alzheimer鈥檚 and vascular dementia) in 2018, and was rediagnosed with Alzheimer鈥檚 Lewy body dementia (LBD) in 2022. He鈥檚 now in stage 6, so he can鈥檛 move his legs, and he鈥檚 developed Parkinson鈥檚-like symptoms. While Ben needs 24-hour nursing assistance, the couple can鈥檛 afford it; instead, a certified nursing assistant is with Ben eight hours on Monday, Tuesday, and Thursday, and four hours each day of the rest of the week. 鈥淎fter they leave it鈥檚 all on me,鈥� Fleming says. 鈥淭he feeding, dressing him, getting him to the bathroom. I have shoulder and hip problems from lifting him. I don鈥檛 sleep much at night fearing he will wake up and try to go to the bathroom and fall.鈥�

After Ben鈥檚 diagnosis, Fleming moved them from a four-story house in Edison, New Jersey, to a smaller house in Charleston, South Carolina, to be closer to Ben鈥檚 daughter, who was stationed at a nearby army base. However, when Ben鈥檚 daughter was reassigned to Japan six months later, it left Fleming with few options. 鈥淸Ben鈥檚 daughter being reassigned] left me stranded in a sense,鈥� she says. 鈥淣avigating a health care system in a new state, dealing with Ben鈥檚 nearby relatives who, when they visited us, despite Ben鈥檚 clear decline, patted my hand and told me, 鈥楬e鈥檒l get better.鈥� I wanted to scream, 鈥楴o, he won鈥檛!鈥� but I understood their inability to accept what I struggled to accept every day.鈥�

For many Black Americans, caring for an aging family member is because it allows the family to keep their aging loved ones close. As , Black Americans tend to have more 鈥渂urdensome鈥� caregiving arrangements since Black caregivers tend to be younger and unmarried and have to balance caring for their loved one with a full-time job. And yet, than their white counterparts, and for their aging relatives.

, a geriatrician and physician at Johns Hopkins School of Medicine, who cares for the elderly at Johns Hopkins Hospital in Baltimore, knows this firsthand. 鈥淚 wouldn鈥檛 be a physician if not for what I learned and experienced helping my family care for my bedridden grandmother and my grandfather who had dementia, from the time I was 7 to 17,鈥� he says. 鈥淭here is joy and peace that comes with caregiving. The peace of mind and joy of caring for someone who once cared for you, of giving of yourself to others, easing their pain. And in my community, we aspire to be there for family members. They want to care for their family as an act of love and devotion.鈥�

Fleming knows that the end is near for her husband. There鈥檚 only one stage of LBD left, and he鈥檚 currently in hospice care. 鈥淚鈥檓 watching my husband die a bit more each day,鈥� she says. 鈥淲e had a great life together; we traveled, he supported me, we had fun, we had love, and I find myself living in those memories to keep me going. It鈥檚 so hard to grieve [for] someone you are looking at every day.鈥� While she says this has been one of the hardest experiences of her life, she鈥檚 also refused to lose herself. She has created a space in their home where she meditates, practices yoga, puts together puzzles for stress reduction, and uses Zoom not only for her continued part-time practice but for regular wellness check-ins with a group of other therapists who provide advice and comfort. 

From her perspective, caring for herself is one of the best ways she can provide for her husband. 鈥淪ometimes when the nurse is here, I will go for a walk around a nearby lake, drive to a park, and just sit in my car for a while,鈥� she says. 鈥淚鈥檓 still working with some clients in my practice who are going through what I am going through, and I tell them what I tell myself and what I try to live: Caring for yourself is caring for your partner. Allow yourself to cry.鈥� 

When I interviewed Fleming via video, I noticed that she was dressed up and wearing makeup. 鈥淚鈥檓 going out tonight,鈥� she says. 鈥淲e鈥檝e lived in this community for over a year, and tonight there is a community social event. I鈥檓 going. A family member will watch Ben. This will be the first time since we moved here that I have gone out to anything like this. Ben鈥檚 care has been all-consuming.鈥�

A weeklong vacation in Scotland was the perfect mix of rest, relaxation, stimulation, and excitement for , who had never traveled to Europe before. The long-overdue vacation was especially meaningful after several years of supporting her elderly parents.

As vice president and chief diversity officer at Johns Hopkins Medicine, as well as a professor of medicine, Golden and her staff oversee the biomedical workforce diversity initiatives and health equity for the Johns Hopkins Medical system, which includes five hospitals in Maryland and one in Miami. At 55, she is at the top of her game, a Black woman in a key position to impact medical policy. She loves her job, but the responsibility of supporting her father in his role as the primary caregiver for her mother, who has Parkinson鈥檚, has required major shifts in her life.

For years, Golden has served as a guide, adviser, consultant, and watchdog as her parents age and as her mother鈥檚 Parkinson鈥檚 symptoms progress. She鈥檚 the one who urged her parents to move from their two-story home in Bowie, Maryland, after her mother fell down the stairs. There had been a time when she and her mom could go to lunch and go shopping together, but that fall changed everything. Though it took months of planning鈥攁nd then COVID-19 stalled the move for a year鈥擥olden was eventually able to help her parents move into an independent living community about 20 minutes from her home. 

While Golden鈥檚 parents have access to medical care, social workers, and even a gym, caregiving still took a toll on her father. Shortly after her return from Scotland, her father passed out and was hospitalized for what his doctors believe was dehydration. It wasn鈥檛 until his hospitalization that her mother confessed that her father was falling asleep whenever he sat down. Golden鈥檚 father, a proud man devoted to caring for his wife, kept all his fatigue and stress a secret from his daughter. 

When her father was hospitalized, Golden took a week off work to care for her mom. Though her son and a friend helped her, caregiving was still overwhelming. 鈥淚 was wiped out by the end of that week,鈥� she says. 鈥淲hen [my] dad was released, we knew he had to get more help at home. He needed a break.鈥�

Since that time, Golden has begun seeing a therapist and has become a member of , a support group for Black women caregiving for their parents. Those two decisions have given her the tools she needs to be a more effective caregiver, daughter, wife, and mother. 鈥淚 had to learn how to set boundaries and how to say no to requests from my family that were unreasonable,鈥� she says. 鈥淚 had to learn that I could no longer depend on my parents for the kind of deep emotional support they offered me in the past because of all they were going through. 鈥� And I realized that I needed someone other than my husband and my son and friends to vent to, to share my frustration and grief, someone outside the family.鈥�

Overwhelmed caregivers need the kind of guidance and support Golden is now receiving. For more than a decade, Paula Rice was a New York鈥揵ased . 鈥淧eople often don鈥檛 know how to ask for help or where to get it,鈥� she says. She encourages caregivers to contact the national foundations for the illness or disease of the person they are caring for. Those foundations can provide information about support groups, the illness itself, and even legal advice. Rice says reaching out to the foundations is a task family and friends can perform for the primary caregiver as a means of support.

Shadowing all conversations about caring for the elderly is dying and death, uncomfortable but essential topics that seem to be unspeakable until the end of life is near or has come. In order to relieve stress, geriatric care manager Craynon recommends that aging people, especially those with children, have these difficult conversations with their potential caregivers. 鈥淎 gift we give our children is telling them what we want long-term caregiving and our dying to look like,鈥� she says. 鈥淚t is important to talk about this. Don鈥檛 be afraid to talk about the end.鈥�

Craynon suggests filling out all important forms ahead of time, including power of attorney, wills, and advance directives. For caregivers with parents who are hesitant to discuss these matters, Craynon suggests this language: 鈥淎s your child, I am concerned about knowing what you want. That is an important thing that I can do for you鈥攈onor your wishes鈥攂ut you have to tell me what they are.鈥�

Rosemary Allender, who provided geriatric care services to families before retiring, agrees. She encourages families to design a plan of care that minimizes caregiver stress, expands support systems, and maximizes independence and quality of life for those who require care. 鈥淭he most important thing is to have open communication and conversations long before the family faces the crisis of how to care for Mom or Dad,鈥� she says. 鈥淐all a family meeting and bring family members together to create an action plan to implement if faced with a long-term caregiving crisis. Everyone can鈥檛 do everything, but everyone can do something. These conversations, if held in advance, make responding to the needs of elderly family members much easier.鈥�

In 2011, offered one of the most apt and moving descriptions in a written testimony for a Senate Special Committee on Aging: 鈥淭here are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers. And those who will need caregivers,鈥� she said. As I prepare emotionally to continue to age, I prepare for the possibility of being a caregiver by remembering that because my life is blessed, every day of my life I am caring in some way for someone, and someone is caring in some way for me. 

鈥淥ver [two] months ago, I decided to permanently stop treatment for my autoimmune illnesses,鈥� Alexandria wrote. 鈥淭he side effects were absolutely horrendous and the treatments only provided a temporary fix that has to be administered again and again for the rest of my life to stall the illness, which isn鈥檛 a cure.鈥� She ended the post by naming her dual diagnosis, which she had been largely private about aside from .

For people with rare diseases鈥攅stimated to be between 鈥攆inding the right doctors and treatments can feel like a Herculean feat, a reality Alexandria knew all too well. 鈥淭here is no long-term cure,鈥� she wrote. 鈥淚鈥檓 very very very sick, things are progressing fast. I鈥檓 wheelchair or bed bound most of the time. I had 16 seizures yesterday and over 30 stiff person attacks.鈥�

In the United States, rare-disease patients often go into significant medical debt to pursue treatment, even traveling to different states to see specialists with months-long waiting lists. In addition to the monetary burden, those seeking treatment for rare diseases also face a mental, emotional, and spiritual toll. 

鈥淚 wake up with excruciating pain,鈥� says , a disabled adaptive fashion influencer and one of just a few hundred people in human history to have been diagnosed with , a cancer disorder that causes bone tumors and vascular lesions most often in the hands and feet. 鈥淭here鈥檚 not a moment that I don鈥檛 have excruciating pain, which is awful for a variety of reasons. It obviously takes a toll on your mental health and your social and interpersonal and professional life. The first thing I have to do in the morning is wake up, take my opioids, and then wait an hour just to be able to get out of bed and do anything at any capacity.鈥�

In the face of these obstacles, rare-disease patients like Dur谩n must relentlessly call insurance companies and medical offices, create and share resources, and form care networks to lift some of the burden鈥攁nd help keep them alive.

Routine Misdiagnosis

As a baby, Dur谩n was misdiagnosed with , which similarly causes bone tumors in different parts of the body. When her father sought a second opinion, she was again misdiagnosed, this time with , which occurs when scar-like tissue replaces healthy bones.

鈥淭hey ran with that diagnosis until I was 18,鈥� Dur谩n says. 鈥淭he treatment is similar in that I still got leg lengthening, but I was also supposed to get annual cancer screenings with full-body MRIs or full-body CT scans with radiation, and they 飞别谤别苍鈥檛 doing that.鈥� The Cleveland Clinic notes that Maffucci syndrome patients , with up to 50% of Maffucci patients developing chondrosarcoma, a bone cancer that begins in cartilage cells. (Dur谩n estimates her odds of getting cancer at 55%.)

Just before Dur谩n graduated high school, her doctor misdiagnosed her with cancer and referred her to orthopedic oncology. However, when she showed up for her appointment, she learned she鈥檇 been kicked off her when she turned 18. To continue treatment, she had to apply for adult benefits or find other insurance, which would severely delay care.

In 2017, Dur谩n was officially diagnosed with Maffucci syndrome. 鈥淸Maffucci syndrome] is so rare that when I was diagnosed, they didn鈥檛 even know what gene caused it,鈥� Dur谩n says. Unfortunately, Dur谩n isn鈥檛 the only rare-disease patient who鈥檚 been misdiagnosed more than once.

Miranda Edwards, a.k.a. , was dismissed by multiple doctors for 鈥渁nxiety鈥� when she had a malignant tumor in her adrenal gland. Due to the delay in care, her tumor became untreatable. She has been 鈥溾€� since 2014, sharing each step of her journey online as well as resources she鈥檚 created herself鈥攍ike a 鈥攕o others can advocate for their health.

In 2023, Edwards asked for help raising thousands of dollars to pay for life-saving molecular testing of her thyroid after she was outright denied surgery to remove a Grade 5 tumor because of her existing condition. Edwards, who is based in Canada, said her health care would have paid for the testing if the tumor had been Grade 4 or lower; essentially, she was once again put at extraordinary risk because of doctors dragging their feet with the 鈥渨atch and wait鈥� approach.

Tools for Progress

In many cases, rare-disease patients are forced to become the foremost experts on their conditions, putting them in the position of educating the medical professionals who are supposed to be treating them. 鈥淚 think a lot of health care professionals give up on finding answers beyond our rare diseases,鈥� Dur谩n explains. 鈥淚 was at a Maffucci syndrome and Ollier disease patients summit at Johns Hopkins last year, and my researchers told us that when doctors see a rare-disease patient, they often focus on the rare disease and forget [the patient] can have common diseases too.鈥�

Dur谩n describes seeing multiple doctors, independently researching her test results, and persistently asking questions of her care team, particularly when they didn鈥檛 have an immediate answer for symptoms that didn鈥檛 line up with her Maffucci diagnosis. Eventually, she was diagnosed with both hypermobile Ehlers-Danlos syndrome and Hashimoto鈥檚 disease. 鈥淲e already deal with a lot of health issues,鈥� Dur谩n says. 鈥淪tress is a notoriously bad thing鈥攆or lack of a better word鈥攆or pain, for chronic pain and energy levels and mental health. I think having an advocacy group to help patients navigate the system would definitely improve the quality of our lives.鈥�

Since 2008, the last day of February has been celebrated as , a patient-led effort coordinated with more than 65 global organizations, including the European Organisation for Rare Diseases (EURORDIS), to raise awareness for lesser-known diagnoses and the people living with them. Stanislav Ostapenko, who鈥檚 been director of communications at EURORDIS since 2021, says rare-disease patients must have strong support networks, including online, to effectively navigate their illnesses.

鈥淲e know that patient populations are very scarce,鈥� he explains. 鈥淲e know that for certain diseases there are just a handful [of] patients across the globe. So it is very important to know that you belong to a community and you can be accepted, you can be understood, and you can also speak to people who have the same condition as you do and that you can find support.鈥�

A major component of Rare Disease Day is translating and adapting tool kits for multiple languages and impairments so anyone can use them, even if they lack expertise. EURORDIS uses this tool to encourage us all鈥攖hose with rare diseases and those without鈥攖o be good patient advocates.

The Significance of Burnout

A from the physician network MDVIP and online random-probability panel Ipsos KnowledgePanel indicates that 61% of polled patients see the U.S. health care system as a hassle and that one in three are 鈥渂urned out.鈥� One-third of patients reported deferring care in the last five years because they couldn鈥檛 get a timely enough appointment to address their concerns or they had a bad experience with a provider. The survey also states that at least one in four Americans who did seek care suffered a negative impact on their mental health, had worsening symptoms, or were misdiagnosed.

All of these factors lead to patient burnout, with chronically ill, disabled, and rare-disease patients facing these issues on a more frequent basis because of how often they are forced to seek care for symptom management, procedures, and medications.

In her 2022 book , Leah Lakshmi Piepzna-Samarasinha writes about the importance of learning both one鈥檚 own and their loved ones鈥� 鈥渃are languages鈥� to create inter-abled care webs in which everyone can get what they need without harming others and getting caretaker burnout: 鈥淲hen I think of the care webs I am a part of that mostly work, they are a complex moment-by-moment dance of figuring out what we need that is a lot like consent negotiations in sex,鈥� Piepzna-Samarasinha writes. 鈥淩aw embarrassment, messiness, confusion, working through shame at needing something (or anything), figuring out what I might need to even begin to ask for.鈥�

Piepzna-Samarasinha also writes about the necessity of employing 鈥渁 diversity of care tactics鈥� so people can, for example, seek help chasing a referral from a doctor to another doctor to the insurance company and back again, or assistance applying for financial aid from organizations such as the National Organization for Rare Disorders (NORD) to help offset the costs of medication, diagnostic testing, travel assistance, and caregiver respite.

When the COVID-19 pandemic began in 2020, mutual aid and collective care became even more important for people with disabilities, including people with rare diseases. Whether it鈥檚 nondisabled people offering rides, helping call doctors or email insurance companies, or assisting with documentation and organization, advocacy networks鈥攏o matter how small鈥攈ave become essential for rare disease patients.

In 2022, disability-justice activist Alice Wong wrote about that ended with her family expending great financial and personal resources to prevent her from having to move to an inpatient facility: 鈥淭he safety net is not a net!鈥� Wong wrote. 鈥淚t鈥檚 a big fucking hole.鈥� Without Wong鈥檚 family advocating for her, she would have had few choices for continued care: 鈥淭he system drives people toward institutions,鈥� she wrote. 鈥淚t is designed to segregate expendable and 鈥榥on-productive鈥� disabled and older people like me. Out of sight, out of mind.鈥�

Advocacy networks can help patients fight for their needs with insurance companies, which are often quick to dismiss medications that are 鈥渢oo expensive鈥� or treatments that are 鈥渘ot medically necessary.鈥� They can work with NORD to launch local registries, promote or host funding drives for patient-focused drug development, and work directly with existing disability-rights organizations to streamline processes and/or build out their volunteer base.

Dur谩n, like Wong, relies heavily on her nondisabled family members for help with daily tasks, which can include bringing her food and water or cleaning her room (the latter which she pays them to do). 鈥淎s disabled people, we鈥檙e already grappling with our health and it already bleeds into every aspect of our lives,鈥� says Dur谩n. 鈥泪蹿 we had nondisabled allies caring about accessibility or ableism at any capacity and advocating on our behalf, or just calling out ableism or inaccessibility even when we鈥檙e not in the room, I think it would make a world of a difference, especially because I think a lot of disabled people already face a lot of burnout because of our health or lack thereof.鈥�

Highly visible advocates like Dur谩n and Edwards use their platforms to educate their followers, but ultimately they shouldn鈥檛 be tasked with radicalizing nondisabled people into confronting and seeking to improve the medical system. 鈥淣o one is immune to becoming disabled,鈥� Dur谩n points out. 鈥淚t can happen to quite literally anyone.鈥� If that doesn鈥檛 radicalize nondisabled people, perhaps nothing will.

Unfortunately, we are seeing some toxic individualism play out in response to the recent COVID-19 pandemic.  Some are hoarding materials and resources, while others respond dismissively to the pandemic with things like, 鈥淚鈥檒l be OK; the virus is only a threat to the elderly and those with weakened immune systems,鈥� or even going as for as framing the virus as being a good thing for the environment, as 

According to the World Health Organization,  when a new disease for which people do not have immunity spreads around the world beyond expectations. To break that down further, the symptoms of the virus have not changed or gotten worse, but rather, it鈥檚 the spread of the virus that makes this a pandemic and the fact that most people across the world do not have an immunity built for this virus, which, of course, contributes to how fast it is spreading. 

As a new strain of coronavirus, which has already existed in some different forms, doctors and health officials worldwide are still trying to get a grasp of what this outbreak of COVID-19 will entail, and how to get ahead of it. What we do know so far is that COVID-19 is especially brutal and even lethal for the elderly, for those with weakened immune systems, and those with preexisting conditions. We also know that it is spreading quickly, and as a result, a growing number of events are being canceled, while some towns hit especially hard are even going into quarantine. 

Needless to say, as Indigenous people, our elders are precious and sacred to us.  They are keepers of knowledge, and they sit at the center of so many of our cultural spaces and ceremonies. While COVID-19 might not hit all of us hard, we all have a responsibility to protect our cherished elders and those who are also vulnerable and valuable members of our communities. 

The simple truth is that this disease is causing suffering and inequity across the world, to people鈥檚 bodies, their livelihoods, their spirits and emotional well-being. Furthermore, we are only as strong as the most vulnerable person in our community, so now, more than ever, it is imperative for us to decolonize from individualism and reconnect with ways of community care. 

As stated earlier, the circumstances we are in can lead to paranoia and fear because our peoples have endured germ warfare in the past, and we鈥檝e been misled if not outright harmed by colonial systems. While this pandemic is not being maliciously introduced to our communities, we would be remiss not to acknowledge this truth and also acknowledge that our communities are at the frontlines of inequities in health care. 

So we do not get lost or spiral into fear and stress, which can actually compromise our immune systems, we draw from our beautiful survival and our timeless knowledge, and share some traditional practices that may support our spirits in this time. We encourage you to share these with the people around you to help mitigate stress and overwhelm: 

1. Smudge and Stay Grounded

Here at NDN Collective, we start our days by smudging and grounding ourselves as we prepare to face the important daily tasks in front of us.  In moments like this, a daily smudging ritual can help ground us in prayer and spiritual fortitude. This practice gives us a moment to slow down, acknowledge what we are grateful for, release tension, and call in protection and strength. Furthermore, rituals are important to keep us anchored in our truth and in our power.

2. Connect with Traditional Medicines and Knowledge

It鈥檚 true that our relatives and ancestors endured germ warfare at the hands of the U.S. military while suffering great losses. What鈥檚 also true is that we survived, and our connection to traditional knowledge and medicine has played a role in that survival. 

During this time when we are having to practice 鈥渟ocial distancing,鈥� it is a perfect time to dive into learning about your traditional medicines, whether that be tinctures and syrups, traditional foods, plant medicines, fermentation, and so on. Connect with friends and relatives and learn from each other. Use technology so you can talk about your learnings and experiments virtually, in making these medicines via text, video, or FaceTime. 

Here are just a handful of traditional medicines that support immune and respiratory systems and are also anti-viral:  , , garlic, elderberry, lemon balm, and oregano. 

3. Build Community

When we are able to quiet all the worries, the media, and public frenzy of this time and think about the big picture, we can see that this moment is an opportunity to come together in community, in care and preparation. Grave threats like climate change are real and these types of scenarios may become more frequent and perhaps more extreme. This is why building with community is critical for how we respond to these types of events. 

In times like this, we need to identify who in our community is most vulnerable and strategize the best ways to protect them. We need to think about food security, and not in a capitalist and individualistic sense, but in a collective sense. We need to reflect on some important questions, such as: Are we growing crops in the summer to store and feed our communities during times like this? What are our most fundamental values that our community has to draw upon in high stress moments like this? How do we make decisions? And how do we not turn on each other? 

This is all decolonial work: getting back to community and even matriarchy, honoring the interdependence of all beings, and valuing the collective over our own ego. 

We are learning from communities that are at ground zero of devastation, such as Italy and Washington state, that 鈥渟ocial distancing鈥� is a critical strategy in curbing the spread of this new disease. For Native communities 鈥渟ocial distancing鈥� can be challenging because many of us live closely with our relatives, our elders, and our young ones, often in the same household, so this strategy will require some 鈥淚ndige-nueity鈥� and conversations as a community for how to care for elders and each other.

In closing, we will survive COVID-19. And by the time the pandemic has been managed, we will have learned so much from this moment and how we can better prepare for these types of scenarios; we will see where we have gaps in our communities, cities, nations, and where we have strengths. When all of this has stabilized, we encourage you to not to forget the feelings and the lessons that this moment is giving each and everyone one of us. Write them down so as to not forget this moment.

We can not go back to business as usual after this experience. We have to apply what we learned to our lives, to our politics, and to our relationships, so that if and when this happens again, whether it鈥檚 a pandemic or a climate catastrophe, we can be fully prepared as communities. This might look like voting in November, or working for Medicare For All in your state or region, or working within your community to build gardens and food banks, bringing in renewable energy so we are not dependent on grids or oil and gas.

This moment can feel scary and strange. But again, when you quiet worries and the fears, moments like this really urge us to become strong, innovative, holistic-minded, and resilient peoples.

This article originally appeared at .

Woods, who is trans and nonbinary, works as a birth doula in the Seattle area. As part of their job, Woods extensively plans for a client鈥檚 post-labor recovery, and they wanted a similar level of care after their surgery. Top surgery was going to be vulnerable and challenging, Woods knew, and rather than rely solely on a partner or friends, they decided to hire an expert: a gender doula. 

Similar to birth doulas, gender doulas are non-clinical companions who provide advocacy, knowledge, and support. These days, you can count on two hands the number of people who have assumed the formal title of 鈥済ender doula,鈥� but they have existed over the decades in other forms as 鈥渢ransgender transition coaches鈥� or more informal word-of-mouth mentors. With exploration of becoming more common and , people are turning to gender doulas to navigate an often unwelcoming environment.

The gender doula could remind Woods to take their medication, supervise them on a walk in case they started feeling dizzy, or record how much fluid was draining into their post-surgical plastic bulbs to ensure they 飞别谤别苍鈥檛 at risk of infection. The doula could also act as an advocate at doctors鈥� appointments and ensure Woods鈥� correct pronouns were being used, given that they are often misgendered at the hospitals where their clients are giving birth, though 鈥渢hey/them鈥� pronouns are clearly written on their badge.听

鈥淲hen you鈥檝e fought for so long, and have been silenced or not seen, and are finally stepping into your body, and then someone doesn鈥檛 see or acknowledge it … it鈥檚 just a dismissal of your existence,鈥� Woods says. 鈥淎nd it鈥檚 crushing.鈥� 

According to a , nearly half of the 1,500 transgender adults surveyed reported experiencing mistreatment or discrimination with a health provider. This includes misgendering, care refusal, and verbal or physical abuse. The rates are higher for transgender respondents of color, with 68% reporting a negative interaction. This in turn leads to health avoidance and delay, which can further exacerbate chronic health problems.

stef shuster, author of the 2021 book , says medical providers are often not trained as experts in gender, which means they bring in a lot of assumptions鈥攕ometimes bias鈥攊nto their work about what they think a trans person should look or sound like.

鈥淎苍测辞苍别 who doesn鈥檛 fit that mold, providers get really concerned about opening up access to care,鈥� shuster says. 鈥淭he structure of this system is flawed because it amplifies medical authority and minimizes trans people鈥檚 autonomy.鈥�

Gender doulas help maintain autonomy, and sometimes, that looks like educating medical providers. Luigi Continenza, a gender doula in Tacoma, Washington, 鈥攍ike using the word 鈥渃hest tissue鈥� rather than 鈥渂reast tissue,鈥� or not asking patients about their top surgery scars when they鈥檙e seeking care for their ankle. 

Woods wanted a gender doula who could navigate the system, so they chose Ken McGee, a fellow birth doula who鈥檇 recently transitioned. He was also a physical therapist for a decade who鈥檇 seen how isolating gender-affirming surgeries can be and didn鈥檛 want people going through the process alone. McGee began pursuing gender doula work during the pandemic. He鈥檚 especially excited about educating clients and planning for rehabilitation post-surgery. 鈥淗ow are you going to be set up for sleeping? How do you think you鈥檙e going to wipe your bum? What鈥檚 showering going to be like?鈥� he says. 鈥淚鈥檝e never seen a surgeon鈥檚 office have a handout that covers all of that.鈥�

For those who decide to medically transition鈥攏ot a requirement for a transgender identity鈥攁 gender doula might offer guidance about how a patient can communicate with their doctor. But they won鈥檛 dish out medical advice. Gender exploration can be delicate, and many doulas are there to listen and help people process, though it鈥檚 important to note they are not trained therapists. 

, one of the first and only full-time gender doulas, says people often seek him out when they鈥檙e exploring their gender and feeling scared or confused. Like McGee, he started during the pandemic and much of his practice is online. He hosts virtual workshops such as 鈥溾€� and , but a bulk of his work is one-on-one consultations.

Lawliet holds a Ph.D. on the history of transgender medicine鈥攐ne of his clients dubbed him the 鈥渢rans librarian鈥濃€攂ut he also has lived experience. 鈥淚t took me a long time to realize that actually, I鈥檓 a gay man,鈥� he says. 鈥泪蹿 I had had somebody just talk it through with me, I feel like I could have saved eight years of consternation, you know?鈥�

Lawliet says listening to Erica Livingston, a birth doula with Birdsong Brooklyn, on the podcast inspired him to pursue his current path. 鈥淪he said this line: 鈥榃e need a doula for every threshold.鈥� Of course, the threshold I was working with was transition,鈥� Lawliet says. 鈥淚 had a huge, thunderous, lightning moment.鈥� Eventually, Livingston and her partner, Laura Interlandi, became his mentors, teaching him the skills to guide people through their most vulnerable and tender moments.

From his apartment in Los Angeles, surrounded by Dolly Parton art and tarot decks, Lawliet meets his clients over Zoom, which allows him to see people anywhere in the country鈥攎ore than 115 of them so far with a growing waitlist. On a given day, it鈥檚 not uncommon for Lawliet to discuss everything from the spiritual aspects of transitioning and not feeling trans enough to the current political climate. Then there鈥檚 the logistics鈥攊nsurance, clothing, name change鈥攁ll the complex, moving parts of being trans, he says.

There鈥檚 currently no certification process. (Birth doulas have a certification process, though it isn鈥檛 a .) However, Lawliet is continually receiving requests for mentorship, so he is planning to offer a structured mentorship program in the future. For now, he has only taken on one mentee, who is Filipinx and Yaqui, which gives clients of color an option for someone with more shared experience.

Given the lack of official training, Lawliet strongly believes a deep interrogation of self needs to happen before someone assumes the title of gender doula. He鈥檚 always thinking about the ethical considerations of the role鈥攃onfidentiality for one, or not trying to force people to grow or heal in a way that he thinks they need. He also created an online community with other gender doulas, including McGee, Luigi Continenza, Bowie Winnike, and Ro Rose, where they share resources, troubleshoot, and refer clients to one another.

In the end, McGee worked with Woods for a month. He taught them the signs of abnormal swelling and of course, made smoothies. When Woods wanted to step out into the world, McGee was right there alongside them, reminding them to take pauses when they felt winded, filling in the awkward silences, and stopping when they wanted to admire the exuberant branches of their favorite monkey puzzle tree. 

Eventually, Woods healed. The first time they slipped their favorite black hoodie over their head and looked in the mirror, they cried and thought:听鈥淭hat鈥檚 how it鈥檚 supposed to look.鈥� Woods and McGee are still in touch, and every now and then will go for a walk, together.听

鈥淚n my practice, I鈥檝e already observed some of the impacts of election-related stress,鈥� says counseling psychologist and scholar-activist . 鈥淎nxiety levels among my Black and Brown friends, clients, family, and colleagues have been consistently high since January.鈥� The 2016 election, too, bore this same bitter fruit. In the hours after Trump鈥檚 victory, saw record highs.

Clearly, most people struggle to weather the acute strain of any modern election.听 But the 2024 cycle represents something of a perfect storm鈥攆our years into the ongoing COVID-19 pandemic and the country鈥檚 continued failure to protect public health; two years since the fall of Roe; a historically unprecedented wave of anti-trans legislation; the relentless, U.S.-backed genocide in Gaza; and the ever-present existential threats to American democracy. At a time when politics are often so deeply (and purposefully) uncaring toward the well-being of people of color, those seeking reproductive care, and the LGBTQ community, intentional care is a vital strategy to reclaim power and mutual agency鈥攏o matter who you are.听

And according to mental health experts, somatic healers, activists, and organizers, building a wellness toolkit that includes that kind of community and self-care may be essential to our survival, through this election cycle and beyond.

Make a Plan Now鈥攁nd Do It With Community

When it comes to developing a mental health care plan for yourself, your loved ones, or your community, there鈥檚 no time like the present. Erica Woodland, founding director of the healing justice organization (NQTTCN), recommends two main strategies: resiliency planning and safety planning.

Safety planning is used in many different contexts, but generally aims to identify risks to your personal and/or communal safety, compile resources, and evaluate how you might mitigate harm and increase safety for yourself and others. The point is that you and your loved ones have a clear, communicated plan in place before a crisis. To get started, Woodland recommends using a. Though aimed specifically toward intimate partner violence, the safety planning section (starting on page 23) can be adapted across a variety of situations and needs.

Meanwhile, resiliency planning involves identifying the protective practices that help safeguard people鈥檚 well-being and increase their resiliency, both long term and day to day. Woodland says this can be especially important for organizers, who frequently navigate burnout in their movements. 鈥泪蹿 I have more resilience, it means the more crisis that happens, I won鈥檛 be so easily thrown off,鈥� says Woodland. 鈥淚t doesn鈥檛 mean I won鈥檛 be impacted, but we have to have the system set up for people to be able to weave in and out of this work based on their capacity [and] based on their ability.鈥�

Your exact resiliency strategies will depend on your preferences and needs鈥攖here are no wrong answers here鈥攂ut to assess your relationships and opportunities for mutual support. As part of this work, take the time to open up a conversation with your loved ones about what it looks like when you need help and how you can step in, and step up, for one another. 

鈥淭o [plan] with other people is really important, not because other people have to be part of the plan, but [because] when we do these things collectively, it helps to decrease shame around our needs,鈥� says Woodland.

Incorporate Somatic Strategies

In addition to planning for your needs over time, consider how you can tend to your daily needs as well. There are a number of somatic鈥攐r body- and nervous system-focused鈥攖ools to lean on, says , LCSW, a New York City鈥揵ased therapist who focuses on Black, Indigenous, people of color, Asian American, and LGBTQ communities.

鈥淥ne of the ways to connect to the nervous system is movement, feeling every inch of the body when you move,鈥� says Nou. 鈥淚 have clients that come in for sessions and they鈥檝e never really even experienced their body. So what I do is give a self-massage [and ask], 鈥榃hat does the sensation feel like when you鈥檙e just massaging your hand? Is that pleasant? Is that warm? Is it cold?鈥� I know it feels really simple, but this is like where we start to connect to our nervous system and our senses.鈥�

Likewise, Nou recommends co-regulation, or the process of attuning one鈥檚 body to another, in order to quiet and calm the nervous system. If you鈥檝e ever felt calm while holding an animal, felt safe in a hug, or were reassured by the soothing voice of a loved one, you鈥檝e likely already experienced the power of co-regulation. Movements like walking or dancing, touch, and ritual can all provide this benefit鈥攊t鈥檚 less about the specific activity and more about creating the space and availability to connect and be present in your body. 

Finally, you might benefit from visualization techniques. If you struggle with boundaries, Nou recommends imagining a shield or egg in front of you to get a stronger sense of where your body starts and ends. 鈥淚t鈥檚 important to recognize this is our space, this is our capacity, and this is where someone else is,鈥� explains Nou. 鈥淪o much of that [can] merge and blend into each other, especially for nervous systems that are used to appeasing or fawning or pushing.鈥�

Lean on Healing Lineages

Though the election鈥攁nd politics more generally鈥攁re often draining, nourishment can be found in the many lineages of queer resiliency and care.

Rooted in Black feminist theory and practices, Mosley developed , which offers not only comprehensive but also a physical and virtual community space located in Durham, North Carolina. 鈥淭hese community-care spaces offer opportunities for members to release, connect, receive validation and support, and collaboratively devise strategies for resisting oppression and embracing joy,鈥� says the psychologist and activist-scholar. 鈥淩ecognizing the pervasive nature of oppression and its impact on our daily lives, it鈥檚 essential to carve out intentional spaces to counteract these forces.鈥� You may join a virtual or in-person healing or grief circle, connect to a local faith group, or attend an LGBTQ and/or BIPOC-focused community offering. To get started, check out peer support spaces like the , and , as well as the .

You may also choose to carve out some intentional time for reading, either on your own as or in conversation with loved ones. NQTTCN founder Woodland and organizer Cara Page co-edited the anthology , which guides readers through the many legacies of healing justice and offers models for care, safety, and political liberation. Likewise, Shira Hassan鈥檚 and Leah Lakshmi Piepzna-Samarasinha鈥檚 are great books to start.

However, prioritizing well-being doesn鈥檛 mean always engaging in spaces that are facilitated, formal, or therapy-adjacent. You can look for what somatic therapist calls 鈥渕icropockets鈥� of solidarity and ancestral connection鈥攔itual,  dance, touch, storytelling, singing, and other forms of collective embodiment and joy.

鈥淭he more one experiences oneself as part of a fundamentally interconnected web [of] past, present, and future with other kin, the more buffer against the oppression,鈥� says Saalabi. 鈥淚t requires building connections with other folks in ways that disrupt and challenge systems designed to cut us off from our bodies, from our past, and from each other. 鈥�

Saalabi continues: 鈥淲hen we do the radical thing of reconnecting with our queer cultural embodiment with other queer trans bodies of color, we are actually doing what humans have been doing for millennia, and are reclaiming our deep rootedness and repairing the lineages.鈥�

CORRECTION: This story was updated at 1:48 p.m. PT on May 20, 2024, to correct a misspelling of Somaly Nou鈥檚 last name, and to correctly list their professional credentials. Nou is a licensed clinical social worker (LCSW). Read our corrections policy here.

In a world where thinness reigns supreme and diet talk is as normal as talking about the weather, fat folks rarely have the opportunity to share their stories without fear of being bullied or berated. Gordon, also known as 鈥淵our Fat Friend,鈥� (previously anonymously), has claimed her own space online where fat stories are welcome. She鈥檚 written essays about living as a fat person, as well as informative pieces about the harms of diet talk, how to examine your anti-fat bias, and the public health risks of fat-shaming. In her new book, What We Don鈥檛 Talk About When We Talk About Fat, Gordon seamlessly threads a personal narrative with data and history. It鈥檚 a much-needed and accessible addition to fat discourse.   

On a dreary Thursday morning in Seattle, I hopped on a call with Gordon to chat about her new book. Her voice felt familiar even though we had never met, and I soon realized that her online moniker is accurate: I felt like I was talking to a friend, one who understood the pain of living in a body that society is constantly trying to shrink. 鈥淲e just seem to be stuck in dogged pursuit of an answer to this one question: how do we stop having fat people? I don鈥檛 know that there is much that is more demoralizing to me than hearing people I love talk about how much better the world would be without people like me in it.鈥�

Gordon opens her book with a story about being put in a middle seat on a plane as a size 28, and the anger she received from the man sitting next to her. 鈥淲herever I go, the message is clear: my body is too much for this world to bear. And it鈥檚 reinforced by the people around me. Like the man on the plane, strangers take it upon themselves to tell me what I already know: that I won鈥檛 fit and I鈥檓 not welcome,鈥� she writes.

This kind of discrimination against fat people is part of a larger cultural obsession with thinness, which has roots in White supremacy. In her book, Gordon references sociologist Sabrina String鈥檚 Fearing the Black Body, in which Strings argues that fatphobia was never about health, but serves as a tool to 鈥渧alidate race, class, and gender prejudice,鈥� dating back to colonization. 鈥淭here鈥檚 no question that anti-fat bias, and anti-fatness as a structure, is a direct outgrowth of anti-Black racism,鈥� Gordon says.

Because of fatphobia鈥檚 history as a structural means of body policing, Gordon says, 鈥渁ll of the ways that we level our bad behaviors at fat people are absolutely entrenched in oppressive systems, in violent forms of communication. There鈥檚 no consent built into any of it. All of that is a direct outgrowth of what we鈥檝e all learned from White supremacy. Well, certainly what White folks have learned from White supremacy.鈥�

Today, fatphobia has nestled into many of our social structures: 鈥淎s of 2020, in 48 states, it is perfectly legal to fire someone, refuse to hire them, deny them housing, or turn them down for a table at a restaurant or a room in a hotel simply because they鈥檙e fat,鈥� Gordon writes. Fatphobia is also heavily entrenched in our cultural ethos: , despite overwhelming research that . So who really seeks to gain from dieting? Ah, right. That鈥檇 be the .

Diet culture is insidious. You see it on TV, like when Miranda from Sex and the City joins Weight Watchers right after having a baby. You hear it from your co-worker who won鈥檛 stop talking about how they simply cannot eat another cookie at the holiday party. And I鈥檇 venture to guess you even hear it in your head, when your pants are suddenly fitting a little differently. Regardless of how normalized diet culture is, it鈥檚 harmful.

鈥淭he research on diet talk alone is real wild. People who even overhear a stranger talking about their diet will take a hit to their self-esteem. We have managed to normalize something that is by almost every measure harmful to pretty much every person. Fat people bear the brunt of it because we鈥檙e forced to be aware of our bodies in a different way and where we sit in the hierarchy of body shapes and sizes. But the effects are no less dire on thinner people as well. Everybody pays a price,鈥� Gordon tells me.

Gordon shares many stories like the one about the airplane incident throughout her book, ranging from strangers in grocery stores telling her what food she should or should not buy, to being enrolled in fat camp at age 9. Reading about this, my heart broke for fat kids everywhere who bear the burden of our obsession with thinness. I had to know: How does one heal from this kind of trauma?

鈥淚 find an immense sense of freedom and power in learning the histories behind this stuff and doing deep dives into the research. Because the further you get into it, the more I found that this stuff is not based on science. The ways that we treat fat people are not based on science. They are not based on outcome-driven ideas. The ways that we treat fat people are kind of terrible, and they don鈥檛 actually make fat people thinner, or healthier, or happier. None of the above. There鈥檚 something about peeking behind the curtain of all of this that feels immensely empowering,鈥� Gordon says.

A peek behind the curtain might just turn into a trip down the rabbit hole: Research indicates that to one鈥檚 health than being overweight or 鈥渙bese.鈥� All the fuss and concern-trolling over fat people鈥檚 health? It鈥檚 actually incredibly harmful.

Fat folks know concern trolls all too well. Gordon describes them as people who 鈥減osition themselves as sympathetic supporters,鈥� when they鈥檙e really just well-intentioned bullies. A concern troll might ask a fat person what diets they鈥檝e tried before asking them if they even want to lose weight, or even ask for their consent to engage in what might be a sensitive topic. 鈥淭he simple fact 鈥� is that concern harms fat people. It wrests our bodies from our control, insisting that thin people know our bodies best and that, like a car accident or child abuse, fatness requires a mandatory report,鈥� Gordon writes. The dark underbelly of concern-trolling is our cultural obsession with thinness.

Thinness is not just a descriptor for a body size. Like health and wellness, which many argue is the newest incarnation of diet culture, thinness has become culturally synonymous with moral virtue, thus making fatness its moral opposite. And according to Gordon, thinness takes a lot from us. 鈥淭hinness is a bizarre and alienating construct. Plus size or straight size, seemingly none of us believe that we qualify for the distant perfection of thinness,鈥� she writes.

So how do we take back our right to live with dignity, regardless of our bodies鈥� size? Our ability to live fully and justly in the bodies we have?  

The last chapter of Gordon鈥檚 book supplies a vision for a better world for fat people, and all people. 鈥淎s organizers, our job is to build a collective vision, make sure that folks are enrolled in that collective vision, and push together in concert to make some changes. What I wanted to lay out in that last chapter wasn鈥檛 the end-all be-all of fat liberation, but a series of policies that would actually stem the tide of the incredible wave of harm that is visited upon fat people.鈥�

She recommends some easy policy changes, like including body size as a protected class in schools where states have banned bullying. 鈥淭he number one reason that kids are bullied in school is because of their weight. It鈥檚 above and beyond anything else. 鈥� We could make some serious strides to reduce the harm that is facing fat kids in schools.鈥� All of the policy changes she proposes are pretty light lifts, but they would be strides toward dignity for fat people.

Aside from structural changes, I wondered what thin people specifically could do to be better allies to fat people. 鈥淭alk to your doctor about how they treat fat patients. See if they have equipment that holds fat people. In your friendships with fat people, ask them about their experiences as fat people. Ask them what you can do to help them in the moment if you witness street harassment or someone treating them differently as a result of their size. There are all kinds of ways for folks to show up for this kind of work,鈥� Gordon says.

As a full-time organizer with 12 years of experience, Gordon wanted her book to be accessible to folks who may not know much about anti-fatness, as well as being validating for other fat folks. 鈥淭here are two entry points in: if you鈥檝e never thought about this before, if you鈥檝e never thought about fatness and fat people in this dignity- and justice-centered way, there will be plenty of user friendly entry points for you. And if you are a fat person who has thought about this a lot, my hope is to have created something that allows fat folks to see themselves reflected in a way that doesn鈥檛 usually happen.鈥�

I left our conversation feeling hopeful. Is a better world for fat people on the horizon? Can we learn to let go of our obsession with thinness and weight loss? Gordon, in true organizer fashion, reminds us that building a new world is never simple. But we must get to work.

This is long overdue, as systemic discrimination against weight, age, and different kinds of bodies in general have not only severed our own relationships with our bodies, but also have infiltrated our health care systems, pathologizing and excluding bodies that are not thin, abled, young, and White, resulting in poor quality of care. Body oppression disproportionately alienates us, specifically the bodies that do not fit the so-called standard of beauty, wholeness, and health. Capitalism and White supremacy have given us many reasons to hate our bodies, because they teach us to be ashamed of them鈥攁nd to shame others. 

Body Shame

In an article titled 鈥�Body Shame and Transformation,鈥� Sonya Renee Taylor describes the spiraling experience of body shame: 鈥淲e berated and abused ourselves because we were berated and abused by others. We thought the outside voice was our own, and we let it run roughshod over our lives. And then we judged ourselves for judging ourselves, trapped on a hamster wheel of self-flagellation. Oh, honey, that is no way to live.鈥� 

Shame is a social emotion and experience. It is always linked to our relationships and people鈥檚 perceptions鈥攐r, rather, our perceptions of people鈥檚 perceptions. Shame makes us question whether or not we truly belong as we are. Shame makes us nervously wonder about the things that make us 鈥渂ad鈥� or 鈥渨rong.鈥� In the case of body image, shame provokes us to want to hide. We hide our curves, our fat, and our softness. We hide the marks and scars that prove we made it out alive. We hide by altering the areas of our skin where our hairs grow and darker pigments reside. Shame makes us want to put a mask on.

Recent trends on social media and society at large have widely suggested that to overcome body image issues, we must be more audacious and loud about our love of our bodies. For many of us, it does help. There was a time when it was beneficial for me to publicly share my growing love for my body. I wrote and performed songs about it. I posted and tweeted selfies and images where I felt good about how I looked. It felt meaningful to resist and undermine the prevalence of Western beauty standards that made me hate my Brown, curvy body. However, the process did not help me address an inner conflict. I know I should love my body as it is, but there are days when it seems more like an abstraction鈥攁n idea that my body itself finds hard to take in. So to post about how beautiful I think my body is online sometimes feels artificial, like I鈥檓 convincing myself to believe in something that is not authentic. I feel ashamed for not having the consistency to believe the message of body positivity. I feel ashamed for having this shame. And there it goes again: the cycle of shame.

When this happens, we tend to look for ways to get rid of the body shame. Sometimes, this means seeking out what we are all socialized to do in order to solve (or hide) something: to consume. Do I need to find more body positive material and products? Do I need to hire a coach who addresses self-image? Do I need to buy more clothes and accessories that make me feel free and beautiful? The cycle of body shame continues in the allures of consumerism. Bhavika Malik shares similar observations on : 鈥淭he absolute and unrealistic pressure on people to love themselves transformed the body positivity movement into a toxic, profit-driven business opportunity.鈥� 

In her book , Jia Tolentino writes, 鈥淢ainstream feminism has also driven the movement toward what鈥檚 called 鈥榖ody acceptance,鈥� which is the practice of valuing women鈥檚 beauty at every size and in every iteration, as well as to diversify the beauty ideal.鈥� Tolentino explains how the diversification of what it means to be beautiful and acceptable is great, but the complexity lies in the fact that 鈥淏eauty is still of paramount importance.鈥� My interpretation of this is that for as long as beauty bears utmost importance, there will always be those who dictate the standard of beauty, and those who strive to meet these standards for the purpose of social approval. But perhaps, more specifically, meeting these standards is to remove the shame that interferes with our sense of belonging. It probably isn鈥檛 body positivity that the system capitalizes on per se. It capitalizes on the shame we feel any time we do not feel like we fit in or are worthy of belonging.

In her aforementioned article, Sonya Renee Taylor discusses the interruption of the cycles of shame: the practice of radical self-love and compassion. We disrupt these systemic cycles by identifying the antidote, which is also the antithesis of what the system doles out: 鈥淭he only way to beat that system is by giving ourselves something the system never will: compassion.鈥�

When was the last time you experienced compassion? Similar to shame, compassion is also a social experience. It also does not aim to produce and earn as a capitalist tool. We give and receive compassion in the context of relationships, including our relationships with ourselves. Whenever we hide, we isolate ourselves, which decreases our chances of easing the shame and disrupting its cyclical nature. It鈥檚 hard to seek compassion, especially when we鈥檝e been judged and rejected countless times before in our vulnerability. Even then, I鈥檇 like to believe that life is not static. Without dismissing our painful experiences, life is expansive enough to have new ones. More often than not, we take this journey of undoing shame step by step鈥攊nch by inch, even. 

In taking this inch by inch, we remember the value of our bodies that transcend beyond projected and imposed standards of beauty, health, and wholeness. Taking from , I鈥檇 like to share with you the timeless truth: 鈥淥ur bodies are naturally designed to root for us. They self-heal, detect danger, connect us with others and the natural world. Our bodies invite us to rest and play in its kind and creative way. And with that, I realized that my body is not just the home I鈥檝e always wanted, but the home that always wanted me.鈥�

She isn鈥檛 alone: A number of disabled workers given the opportunity to work remotely want to retain that privilege. After all, for some disabled people, this accommodation made it possible to advance their careers, improve the quality of their work, and become more active participants in workplace culture. For others, remote work had a more mixed effect. 

Abby Schindler, an autistic researcher in the Chicago suburbs, found that remote work came with positives, such as being able to manage sensory issues, as well as negatives: 鈥淎s someone who struggles to build social relationships, working from home gets very, very lonely and hard.鈥� 

, the unemployment rate in the United States hit 14.8% in April 2020, the highest since 1948鈥攖he first year in which this data was collected. By July of 2021, the unemployment rate had bounced back to 5.4%, still higher than February 2020, but an astounding recovery after being gripped in a pandemic-fueled economic crisis. A surprising population of workers had even more explosive employment growth: disabled people, who achieved a labor force participation rate . Given that the pandemic has due to long COVID, which affects as many as , exploring the reasons why is critically important.  

The popular explanation for was that the rapid transition to remote work across the country for disabled workers. But the truth is more complicated: Remote work is not a solution for everyone, for a variety of reasons. Furthermore, the availability of remote work should not be used to force disabled people out of the physical workplace. 

During the height of the pandemic, society briefly chose collective practice to protect each other. One standout example was remote work, which acted as a form of mass accommodation that benefited all employees, without forcing individuals to ask for it workplace by workplace. However, the ongoing conversation about how the nature of work has changed for everyone, including disabled people, may be putting too much emphasis on working from home. The conversation also tends to focus on one group of workers: those in professions that allow for remote work, while closing the discussion to much larger structural reforms. 

鈥淓mployers may have become more open to hiring people with disabilities because 鈥� there was the Great Resignation that accompanied the pandemic and lots of people dropped out of the labor market,鈥� says , Ph.D., director of the Center for Employment and Disability Research. O鈥橬eill is hesitant to attribute the rise in disability employment to a singular factor and points to improvements in hiring practices, as well as more flexible working conditions, such as , a practice that allows several workers to share a single full-time role. 

Remote work certainly was transformative for some disabled workers, such as Fiona Kennedy, an operations manager for a construction consulting firm, who says 鈥渞emote work saved my life.鈥� However, the truth is relatively few disabled people benefited from remote work.

There are two important reasons for this. One is flexible scheduling and better leave options: In a examining the rapid shift to remote work, researcher Jennifer Bennett Shinall found that 鈥渄isabled workers report far less access to these pandemic-relevant accommodations than do nondisabled workers.鈥� The other is , in which participation in certain careers and sectors of the economy is heavily mediated by race and/or disability status. For instance, the and executives are white is rooted in reality鈥攁nd while executives can work from home, janitors cannot. 

What the pandemic highlighted wasn鈥檛 just the benefits of remote work, but the need to move away from an individual, rights-based model of disability in the workplace to a larger cultural, social model, a conversation that will benefit a much larger swath of workers as well as society as a whole.

Equitable Not Equal

Under the Americans with Disabilities Act of 1990 (ADA), which built on earlier legislation and policy, including the , , including at work. The ADA reflected a larger societal shift away from the charity model, in which disabled people were viewed as objects of pity, to one of broader social inclusion in which they were entitled to access to society.

鈥泪蹿 there鈥檚 an event that affects everyone and there鈥檚 a solution that might address it in a way that preserves health and well-being, why not provide a mass accommodation relying on the infrastructure and process usually created on an individual basis and allow everyone to do what they do from home to the extent it鈥檚 possible?鈥� says , an assistant professor of law at Brooklyn Law School. 鈥淔or teaching, that turned out to be absolutely possible, particularly teaching adults in a legal education setting.鈥�

Lin鈥檚 work focuses on DisCrit, work that lies at the intersection of disability studies and critical race theory, and she鈥檚 very interested in how the pandemic illustrated that it was possible to move away from a 鈥渓iberal individualized model where you are responsible for your own safety and security by showing up to work鈥� to a more collective, social one. In Lin鈥檚 view, this 鈥渕ass accommodation鈥� allowed a huge percentage of the workforce to pivot overnight, accessing a tool disabled workers had been . 鈥淭he experience of having isolation and needing to innovate quickly to preserve health and well-being through policies that acknowledge interdependence to me was a huge potential cultural shift,鈥� she says.

In ordinary conditions, workplace accommodations take place through an individual 鈥溾€� that is supposed to include bargaining in good faith and negotiation on both sides, but ultimately leaves workers on their own. Prior to the pandemic, disabled workers who needed hybrid or remote work struggled to access that accommodation. And when emergency declarations expired, those mass accommodations ended as well. 

鈥淎fter a tooth-and-nail accommodations/disability discrimination fight with my employer that resulted in union, news, and federal civil rights agency intervention, I won the right to keep my remote work accommodations,鈥� says Heather Ringo, a graduate student and teacher. Unfortunately, the same is not true for many other disabled people, who were forced back into the workplace as shelter-in-place orders expired. 

But those employment protections aren鈥檛 available to , freelancers, and . An Uber driver with kidney disease who needs dependable restroom access is expected to manage it for themselves, for example, just as a freelance journalist who to write needs to purchase their own equipment. 

Meanwhile, accommodations ranging from a safe, clean space to take injectable insulin to seating in retail spaces can be a struggle for low-wage workers, many of whom must work in person. During the pandemic, these workers had to fight for even the most basic personal protective equipment, even as companies patted themselves on the back for offering various forms of hazard pay ().

The Pandemic Work Rebellion

Workers and bosses alike learned an important lesson during the pandemic: Workers have the power to shape their environments. The as the country opened back up highlighted the fact that more workers were willing to walk away from their jobs in a growing 鈥溾€� movement. The aftereffect of this is also apparent in a slew of opinions grousing about how Generation Z simply .

White-collar workers overall鈥攚ho are predominantly white, with 鈥攆ound that shifted dramatically when they were able to do it from home, and once they had a taste of freedom, they were reluctant to let it go. The call to return to the office triggered a revolt. In workplaces across the country, workers argued passionately for remote and hybrid options, insisting that the flexible hours of remote work were beneficial for the quality of their work, overall productivity, and happiness. 

Across industries, furious snowstorms of internal memos circulated, with workers drawing upon a growing body of research to make the case for remote and hybrid options. Some were also that remote work represented a revolutionary accommodation that must be protected now that society recognizes that it鈥檚 possible. The , often viewed by executives and upper management as an authority on innovations in business, crowed over how remote work .

For some disabled people, such as Casey Doherty, this was absolutely true. Doherty, who has illnesses that limit her energy, graduated into the pandemic, and is now struggling to find work. She expresses frustration with alienating job ads (鈥渕ust be able to lift 10 pounds鈥�), refusals to consider remote work, and the sense that 鈥渢his is the way things were done,鈥� so it鈥檚 the way things should be done forever.

鈥淲hy can鈥檛 we expand our understanding of what work can be?鈥� she asks, when talking about the career progress enabled by remote and hybrid options. But the question could and should be applied to a larger conversation. 

Who Really Benefits From Remote Work?

Researchers in fall 2020 estimated that only can be performed wholly remotely. However, conversations about the early months of the COVID-19 pandemic tend to erase the presence of the other 63% of jobs, particularly those of  鈥渆ssential workers,鈥� who were ordered to report to in-person jobs: the meat-packers, nurses, transit engineers, grocery store employees, power plant workers, and others who kept critical systems running. At times, it seemed that society at large felt entitled to the labor of these workers.

For those who must perform on-site work, the conversation about remote work can feel frustrating, a scene of privileged workers celebrating much-needed changes while ignoring the army of workers who made those changes possible.

鈥淭he fact that in in which there was the highest level of COVID deaths were industries in which Black workers are predominant is incredibly telling, because it rests on this history of racial capitalism in which hard labor, manual labor, labor that is associated often with nonwhite communities 鈥ould not be outsourced,鈥� explains Lin. 鈥淲hen essential workers who continued to show up to work during the pandemic physically were celebrated, they actually had their exposure to severe harm and death become the very reason they were deemed essential.鈥� 

Lin explains that the explosion in labor organizing during the pandemic highlighted the collective fight of workers, such as those at Amazon fulfillment centers. 鈥淎ctivists are in a position to point to the ways in which life is made better, but for whom,鈥� she says. 鈥淭here were multiple, basically mass-structural accommodations during COVID that still broke along lines of privilege versus inequality,鈥� where workers with preexisting social and cultural power received more support than historically marginalized ones. 

Remote work, or a traditional accommodations process, can鈥檛 fix occupational segregation and related disparities. True progress in disability employment requires a societal shift from the way that the law, and our larger culture, currently view disabled workers, toward a world in which society is 鈥渘ot entitled to our deaths,鈥� as disability activist Mia Mingus wrote on her popular blog, , in 2022. This necessitates solidarity across cultural and social identities, and across workers. As Lin notes in a forthcoming paper, 鈥淩ather than letting vulnerable professional staff with [less] access to resources fall through the cracks,鈥� bargaining by unionized Albuquerque teachers benefited students and staff collectively.

The conversation about disability employment needs to track not just jobs, : Are disabled people in roles with fair pay, benefits, and opportunities for advancement, or are they pushed into low-status roles? When the distribution across different kinds of jobs is weighted, does remote work really explain the rise in disability employment? And when this conversation excludes the racialized nature of disability and low-wage jobs, is it really representative of the employment landscape as a whole?

The mass accommodations offered during the pandemic provided a glimpse of a world in which disability inclusion is, as Lin notes, folded into the idea of universal design of workplaces. Access to remote work has indisputably changed individual lives, but meaningful solutions lie in shifting the conversation away from one very specific accommodation issue that affects a particular class of workers to disabled workers as a whole, and the deliberate social choices that perpetuate economic and social inequality across race and disability status. Expanding that conversation opens the way to bold solutions, such as ensuring that all jobs are good jobs, dismantling occupational segregation, and promoting collective freedom rather than individual struggle. 

When I tweeted about this article, people were shocked that a young disabled person had lived in a hospital for five years. But it didn鈥檛 surprise me at all, even decades after the passage of the Americans With Disabilities Act in 1990 and , a 1999 Supreme Court ruling that found it鈥檚 tantamount to segregation to force disabled people, who could otherwise live in the broader community, to live in institutions. The Olmstead ruling also insisted that public entities must provide community-based services for those who wish to use them. This is a struggle I understand intimately.

Born with a neuromuscular disability, I am a wheelchair user and have a tracheostomy, a hole in my throat connected to a ventilator that allows me to breathe. I have a team of caregivers who work for me around the clock. Medicaid covers some of the cost, but I also have to crowdfund out-of-pocket costs that total $840 per day. This is not sustainable, yet here I am, treading water until a medical or financial crisis forces me to abandon the family I鈥檝e built with my cats, .

Some disabled people must live in a nursing home or hospital due to their complex medical needs and the lack of and . Medicaid, , is structured in a way that forces disabled people into impossible situations. States are required to provide care in institutions, but community-based services are optional, often with long waitlists. found that nearly 700,000 people with disabilities are on lists for these services, with an average waiting period of three years. Ratcliff is one of many people who have their entire lives on hold because of institutional bias. 

Two years ago, I was in the ICU, which left me unable to speak or eat by mouth. I was determined to return home, but we could not find the additional help I needed. When my sisters relayed this to the discharge planner, he matter-of-factly said we had two choices: Family members would have to indefinitely fill in the gaps, or I could be transferred to a facility outside of the county. I burst into tears. I raged silently, but my face expressed my terror at this prospect. I felt so powerless and fragile, tethered to structural ableism designed to warehouse people like me purely because of our bodies. I have always been vulnerable and dependent on others, but in that moment, I, like so many disabled people, was seen as nothing but a burden, a drain on society, a collection of diagnoses and expenditures. 

My sisters consoled me, saying, 鈥淲e鈥檙e going home, and we will make this work,鈥� pulling me out of the depths of shame, guilt, and fear. Without their support I could easily have been persuaded into thinking that living in a facility was the only option. So many people are in this system designed to disappear us. This haunts me daily.

In January 2024, I was reminded again of in a nondisabled world: My feeding tube ruptured, and I couldn鈥檛 get it replaced until the following week. Meanwhile, the tube began coming out and my abdomen became distended, tender, and rigid. When I could not tolerate the pain anymore, I went to the emergency room. 

I arrived to discover many patients, staff, and health care providers unmasked. When I lay on the exam table to have my tube replaced, I could not communicate the excruciating pain I was in throughout the procedure because they would not allow my smartphone or caregiver in the room. I tried mouthing words, but no one could understand me. My body shivered, every nerve ending tingling as I tried to hold on. 

Two days in the hospital felt like two years. Laws like the ADA require only the bare minimum of care, and there is no enforcement. Compliance cannot be forced, even on people who do not see you as fully human or deserving of the right to access the same space.听

Disabled people constantly navigate hostile environments, especially health care settings. Here people in positions of power can say whatever they want while patients have to give citations, articulate clearly and effectively, and have the presence of mind to push back during acute, potentially fast-moving situations. I have been advocating for my health with doctors since I was a child, but this latest experience shook me. They gaslit me about my valid concerns of mistreatment. Even with all my social capital and resources, I was reduced to nothing. I thought of all the patients on the same floor who were alone, scared, and suffering.

When will disabled people be free to just be and to fully participate in society with autonomy and dignity? Liberating disabled people is a constant collective effort that at times feels like a distant mirage. Alexis Ratcliff had no choice except to live in a hospital for many years and now is being forced to leave even that semblance of a home. I only recently created a home of my own, which took decades of planning, scheming, and manifesting. The constant labor of ensuring my freedom weighs on me heavily. It should not be so hard to survive鈥攁nd survival is not enough. 

wrote that 鈥渃reating access is a critical way of showing up in solidarity.鈥� If we lived in a world that placed access above all, creating access would be a collective responsibility. In this world, cultures of care would ensure that carceral institutions like nursing homes are abolished; people, not profits, would be the priority; care would flow generously without restrictions from the state; and people like me would be secure knowing we are valued and wanted not for what we can produce but for who we are. This world鈥攁n accessible one centered on justice鈥攚ould be ruled by a simple phrase always put into practice: 鈥淣one of us are free until we all are free.鈥� 

The laughing, upbeat music, and endless cookies told me I should be. I sometimes think of myself as an entertainer at parties, waving my hands, poking fun at myself, and speaking in a voice that doesn鈥檛 sound like my own. And so when I told my friend I didn鈥檛 want to be friendly at this party, she rolled her eyes. 鈥淵ou love being friendly.鈥�

I don鈥檛. When I talk at parties sometimes, my mind feels hot and clouded, I鈥檓 suddenly aware of how often I鈥檓 swallowing, and I jump over silences like an Olympian. When I come home, I feel exhausted.

And so I felt frustrated when I read an article urging people who feel lonely during the holidays to go to parties and feel grateful for what they have.

I鈥檝e spent the past two years researching and writing a book about connection and loneliness. I鈥檝e learned a lot about what cultural practices cause disconnection, what happens in our bodies when we feel it, and what solutions people have pursued to feel connected. For instance, we now know that feeling disconnection from people affects the same part of our brain (the dorsal anterior cingulate cortex) as when we feel physical pain. Our brains process breaking up with someone and breaking a leg in similar ways. If disconnection feels like it hurts, it鈥檚 because it does.

Loneliness isn鈥檛 a misstep鈥攊t has a biological purpose. Humans evolved to feel lonely as a natural alert that we need more connection. We feel pain to get us to do things鈥攋ust as we feel pain when touching a hot stove to tell us to move our hand, we feel loneliness to prompt connection. Evolutionarily, a group of people has meant safety for humans. The good news is that we鈥檙e all perfectly capable of forming connection.

Thankfully, loneliness is not connected to social ability. Dr. John Cacioppo, who studied loneliness, wrote that people who feel lonely 鈥渉ave the capacity to be just as socially adept as anyone else. Feeling lonely does not mean that we have deficient social skills. Problems arise when feeling lonely makes us less likely to employ the skills we have.鈥� His research shows we are less likely to want to socialize when we feel lonely. This can cause us to not interact and feel lonelier. A most unfair cycle.

But forcing yourself to go out and smile doesn鈥檛 actually help you feel more connected. Pretending to be happy has a way of highlighting how you actually feel. When entrepreneur Tony Hsieh , he created a culture where it was the norm to be 鈥渙n,鈥� where people celebrated being outgoing and happy. People praised his vision until they realized the Downtown Project had an unusually high suicide rate.

The expectation that everyone should be happy seemed to cause unhappiness. Kimberly Knoll, a therapist in the Downtown Project, explained, 鈥淭hinking that you have complete control over your emotions and if you don鈥檛 feel happy it鈥檚 your fault, that can make people feel shame. It鈥檚 anxiety inducing.鈥�

Not only were people in the Downtown Project expected to be happy, but they were also encouraged to be outgoing. One anonymous citizen there said, 鈥淭here is a danger of happiness as a goal. 鈥� It鈥檚 lonely. There鈥檚 a pressure to socialize and go out. There鈥檚 a pressure to party.鈥� This made it seem like everyone else became happy after mingling, but you were a failure if you didn鈥檛. Sort of like if social media came to life (shudder).

We can extract a lesson from this. When other people don鈥檛 know what you actually feel, then they can鈥檛 empathize with you. This can make you feel more isolated. Acting like a celebrity at an awards show at a holiday party hides what you feel and won鈥檛 provide connection.

An alternative is to volunteer. in your area. No need to feign happiness and no need to go overboard and volunteer for days. Even a little bit helps. Giving to other people is one of the primary ways humans feel connected.

Research shows that volunteering weekly makes people as happy as moving from a $20,000 to $75,000 annual salary. It forces us to become someone鈥檚 ally, even briefly, and we鈥檝e evolved to feel connection when we have allies. Volunteering helps others, but it also helps you feel more connected.

You can also find ways to soothe yourself. Think about the things that help you feel calmer, like writing, exercising, or talking to someone especially accepting. Finding effective ways to show yourself some love can hold you over during a time that鈥檚 particularly tormenting.

There is no universal, quick fix for loneliness. People have felt lonely through time and culture and it has also probably felt dejecting and painful for them. Ironically, you stand in good company when you crave connection to others. , 鈥淚 am lonely every Saturday night.鈥� , 鈥淚 feel isolated. 鈥� I would not wish this upon anyone.鈥� If you feel like it鈥檚 just you, remember that it鈥檚 just you, Jennifer Lawrence, and Justin Bieber. So feel free to ignore the pressure to attend holiday parties. You may be better off volunteering鈥攍ess entertaining, more giving.

鈥淚t does affect the dogs when they are caged like that, without getting walks, or exercise or any stimulation or any human contact,鈥� the volunteer told NBC Los Angeles. 鈥淚t鈥檚 not natural for them to live like that. It鈥檚 inhumane.鈥�

Corea, who underwent three surgeries for the injuries she sustained in the attack, left the field after the incident, but the incident still highlights the consequences of the crowding crisis spreading through animal shelters in the U.S.鈥攁nd as a geographically, culturally, and socioeconomically diverse state, California鈥檚 approach to this overcrowding crisis could be an incubator for other states facing similar issues.

鈥淲e are very overcrowded right now,鈥� an animal control officer in Southern California who asked to remain anonymous tells 猫咪社区!. 鈥淚t鈥檚 resulted in a dangerous working environment, not just for staff but for the people who have to do business in the shelter, the public, the volunteers, our own animals. We鈥檙e having to jam them into cages with other animals. Sometimes there鈥檚 fights, or they鈥檙e not being cleaned as often as they should be.鈥�

Data organization Shelter Animals Count estimates , with 69,988 non-live outcomes such as euthanasia or unassisted death in care and 302,698 live outcomes, including adoption, transfer, and return to owner. The remainder are still in the care of shelters, rescues, or fosters.

Lisa Young, a veteran of animal welfare and executive director of Rescue Train, a Los Angeles鈥揵ased organization, describes the current situation as 鈥渢he worst I鈥檝e ever seen.鈥� It has been compounded by the state鈥檚, and , a , and the dramatic .

A looking at national trends found 43 percent of respondents cited costs as a concern for prospective adopters, with people making less than $75,000 annually experiencing increased financial barriers. Vet care in particular is a serious issue, according to the report, which identifies a growing number of veterinary 鈥渄eserts鈥� where care is not simply not available at any price.

鈥淚n East Valley,鈥� a shelter Rescue Train partners with, 鈥渢hey have animals in crates in the hallways,鈥� Young shares. 鈥淚t鈥檚 disgusting, it鈥檚 inhumane. I鈥檝e never seen animals in the hallways living in crates.鈥� Young is quick to note that this is not the fault of shelter workers, who are 鈥渏ust here trying to clean up the mess of our community,鈥� but is instead a symptom of how dire the issue is.

Nina Thompson, director of public relations at the San Diego Humane Society, which operates a shelter that also manages animal care services contracts from 13 cities in San Diego County, explains that overcrowding has serious consequences for shelter animals. 鈥淎ny time that you have too many animals in kennels, there are disease outbreaks, and also the stress of sitting in a kennel for long periods of time increases with time.鈥�

San Diego Humane is experiencing an uptick in upper respiratory illnesses and a rise in the number of 鈥渂ehavior dogs鈥� who are not coping well with life in the kennels, especially young, large dogs with high energy who aren鈥檛 getting adequate exercise and enrichment. Length of stay for at least 100 dogs at the shelter was more than three months, and large dogs across the state and country are similarly lingering longer in shelters. Shelter Animals Count reports the has doubled since 2019.

Organizations such as , founded in 2020 by Austin Pets Alive! and a coalition of animal welfare partners, propose investing resources in keeping animals out of shelters altogether. Shelter intervention programs, a relatively recent innovation in animal welfare, include pet food pantries, free and low-cost veterinary care, spay/neuter programs, help with pet deposits and landlord disputes, behavior counseling, and assistance with self-rehoming.

Models that approach animal sheltering as part of a larger community care program are working; San Diego Humane, for example, has managed to fulfill its pledge to 鈥�,鈥� with no euthanasia of healthy, treatable animals. Pasadena Humane鈥檚 program has been similarly successful.

High-volume spay/neuter, which streamlines surgical processes to alter as many animals as possible while still maintaining quality, may also be a part of the solution. This approach involves coordination to keep animals constantly moving through the various stages of surgery, from initial induction to recovery. It鈥檚 particularly valuable for and can be done as a mobile or pop-up event to eliminate barriers such as transport and travel.

Related community clinics such as that at can also decrease barriers to access to veterinary care; on a tour of the facility in August, staff highlighted the clinic鈥檚 critical role in keeping pets and people together by providing affordable vet care to families who might otherwise surrender their animals.

However, shelters are in critical need of more funding to reduce intake, administer these creative community programs, and safely house the animals who will inevitably need care. While there are some grant programs such as those offered by or , a state-funded program administered by the University of California, Davis鈥� Koret Shelter Medicine Program, it hasn鈥檛 been enough to meet the need.

Increasing government contracts (which can seem large as budget line items鈥攊n San Francisco, Animal Care and Control ) could help shelters expand their services and capacity.

And, Young argues, more philanthropists need to open their pockets: Despite a growing awareness of , a found that just 3 percent of philanthropy in 2020 went to the environment and animals, a small slice of the $471.44 billion donated by individuals, foundations, corporations, and bequests. 鈥淥f all the money donated in this country鈥濃€攁 nation of animal lovers with 90 million dogs and 74 million cats, according to the 鈥斺€渁nd with all these foundations closing, it鈥檚 a scary time.鈥�

Community buy-in is also key to any solution, says Lisa Kauffman, a campaign strategist at . She鈥檚 working on the , which is pressuring county officials to improve conditions at three municipal shelters, including 鈥渙ne of the highest-intake shelters in the United States.鈥� The grassroots campaign encourages residents to show up at community meetings and includes extensive Spanish-language outreach to connect with stakeholders who are sometimes overlooked.

An engaged community doesn鈥檛 just adopt animals and create more space in shelters for animals who vitally need it. It鈥檚 also more likely to foster, getting vulnerable animals such as neonates, seniors, and long-stay dogs out of the shelter and into homes where they can decompress and experience socialization. Large foster programs are especially valuable for rescues, which can serve the community without a physical shelter location. In addition to fostering, community members who volunteer also relieve pressure on underfunded, overcrowded shelters and their staff.

For California鈥檚 animals, this moment may feel bleak, but, Young says, 鈥渓ike any storm, it will pass.鈥� They just need a helping hand, from lawmakers drafting policies that help animals such as , which would restrict 鈥渘o pets鈥� housing policies, to the workers who creatively utilize resources for the animals in their care, to the volunteers who show up every day, rain or shine.

When I played for the first time, the feeling was transcendent. For a brief moment, the oil masquerade granted anonymity to engage in bacchanal and revelry, a direct to the expectation of respectability and decorum demanded specifically from women. J鈥檕uvert strips back the fanfare and glamor of feathered costumes, compelling participants to surrender themselves to the collective prerogative of the mas.

J鈥檕uvert restored me. When I finished playing, I hopped into a motorboat water taxi and headed to Grenada鈥檚 Grand Anse beach. The sands were lined with people washing off themselves with water after an energizing morning of marching on the road. It was a shedding鈥攁nd I reemerged feeling revived.

Connecting to the Past

Though J鈥檕uvert is commemorated across the Caribbean鈥攑articularly in countries subjected to French colonial rule鈥攖he celebration is unique in Grenada because its participants transform into the Jab or Jab Jab character. The procession is creolized with and , but playing Jab during J鈥檕uvert also has roots in enslavement.

According to the , 鈥淸t]he Jab Jab portrays the spirit of a slave who met his [death] when he accidentally fell (or may even have been pushed by his white master) into a copper vat of boiling molasses. His ghost comes back every year during Carnival to torment his former master.鈥�

Prior to Grenada鈥檚 emancipation from slavery in 1838, enslaved Afro-Grenadian people were referred to as devils. As an act of satire, the enslaved rubbed any substance that would blacken their skin鈥攎olasses, tar, mud, or soot鈥攐ver their bodies, made helmets emulating the devil with cattle or goat horns fastened onto a construction helmet (early iterations of the helmet were made from found materials such as the large posey bowls found on plantations), and walked around with chains. The Jab turned any descriptor deemed to be transgressive鈥攂eing Black, being in chains, being the devil鈥攊nto a symbol of rebellion, resilience, liberation, and freedom.

Now, on J鈥檕uvert morning, Grenadians of all ages gather right before day break鈥斺€淛鈥檕uvert鈥� is a combination of the French words jour, which means 鈥渄ay,鈥� and ouvert, which means 鈥渙pen鈥濃€攖o march through town to a percussive beat (in St. Georges, Grenada, it is often paired with sound systems) and remind themselves of who they are and what their people have overcome.

For Kered Clement, a United Kingdom鈥揵orn journalist currently residing in Grenada, Jab is a structured ancestral practice. When she moved to Grenada 10 years ago, she attended J鈥檕uvert with her cousin. But it wasn鈥檛 until she played Jab with a family friend that she realized the ritualistic nature of the procession. 鈥淭here were rules I didn鈥檛 even know [when I played] with my cousin,鈥� she says. 鈥淎s Jab Jabs, we don鈥檛 laugh, we don鈥檛 smile. We鈥檙e having fun, but this is serious business.鈥�

Outside of its ancestral heritage, J鈥檕uvert is also accessible: Costumes aren鈥檛 required, so participants are encouraged to wear old clothing. However, as Carnival in Grenada has become more popular and attended by celebrities and influencers, the once-insular celebration is now a shared experience with those who aren鈥檛 native to the island.

Given this expansion, Clement sees the importance of reminding people that their engagement with J鈥檕uvert derives from a structured cultural practice. She describes her process of getting ready saying, 鈥淓veryone鈥檚 in the same place. Together, we put lard on, but we don鈥檛 apply the oil yet. We take our bucket of oil down Tanteen Road where the real Jab Jab band leaves off, and that鈥檚 where we put on our oil. We march through the streets with a band. When the sun gets intense, we depart. We walk through the streets back to the same location where there鈥檚 bakes and saltfish waiting for us.鈥�

Clement鈥檚 reverence for J鈥檕uvert extends to what she wears on the road. This year, , released the song 鈥�,鈥� whose title references a burlap sack . Clement also decided to this year. 鈥淚鈥檓 gonna get a Grenadian designer [named] Ali Creations to design me a crocus bag dress,鈥� she says. 鈥淚nitially, [wearing the dress] was about the song and doing something different, but a lot of people messaged me and said, 鈥榃ow, I feel like you brought back the culture and the uniqueness.鈥欌€�

For this year鈥檚 Spicemas, also created a costume, , inspired by Grenada鈥檚 connection to Africa, Jab, and the Black women who play it. Nevlyn John, a representative with ORO, says Mecca is indicative of 鈥渢he strength of women, and the appreciation of our African heritage and [its] influence in our Carnival and our society. So, when we speak about [Mecca] being the 鈥榪ueen of queens,鈥� it is about celebrating our womanhood where the Blackness and authenticity stems from.鈥�

In the Land of 100,000 Jabs

Though J鈥檕uvert鈥檚 visual economy of imagery is dominated by men, women also take part in the celebration. For Black women who play Jab, there are a variety of benefits that contribute to their overall cultural, mental, physical, emotional, and spiritual wellness. 鈥淲hen I talk to folks about Jab Jab, they felt that spiritual connection even more deeply,鈥� says Sherine Andreine Powerful, DrPH. 鈥淚t recruits so many different emotions for people that you can鈥檛 help but feel very present and even more connected in that moment.鈥�

For her , Dr. Powerful explored how the quarantine impacted the ability to play mas and what this meant for Caribbean people in the region and the broader diaspora. Ninety percent of her research participants were Black women who described their involvement as a 鈥渃ollective social self-care ritual,鈥� she shares. 鈥淸Playing Jab mas] provides a space for catharsis, a space for joy, a space for release and space for healing.鈥�

After Saharrah Green, who was born in Grenada, moved to Toronto at the onset of COVID-19 to pursue a degree, she felt disconnected from J鈥檕uvert. But playing J鈥檕uvert in 2024 helped her re-ground herself in her heritage. 鈥淵ou really get a chance to just be free,鈥� she says. 鈥淚 don鈥檛 have to think. I just get to be myself. I get to just be home, allow myself to fully be in that moment around people that truly get me.鈥�

Tamika Nelson, who is based in the United Kingdom, agrees. She began playing J鈥檕uvert when she was around 13. Now, she describes her participation in J鈥檕uvert as a way to improve her mental health. 鈥淧laying mas, no one cares really what you look like,鈥� she says. 鈥淵ou just go out there to have a great time. 鈥� You always find like-minded people on the road and without even thinking, you鈥檙e in a better mental state.鈥� 

For Black women, Jab is something to look forward to that embraces body positivity. It is also an opportunity to reconnect with heritage or continue Caribbean cultural practices that celebrate individual expression. 

When Black women play Jab, it offers both great comfort and great power鈥攁n opportunity to free themselves. 鈥淥ur ancestors have these healing practices that combine body, mind, and spirit,鈥� Dr. Powerful concludes. 鈥淭hat connection has never been severed. From what I鈥檝e experienced 鈥� Carnival brings us back to that ancestral body, mind, and spirit are all connected. People feel all of that on the road.鈥�

CORRECTION: This article was updated at 12:23 p.m. PT on December 9, 2024, to update the honorific for Sherine Andreine Powerful, DrPH and correct the spelling of Kered Clement鈥檚 name.听Read our corrections policy here.听

Many of us are experiencing election grief, defined by as an 鈥渦nresolved grief鈥� that shows up in 鈥渢he loss of hopes and dreams and plans that [people] thought were coming from the other candidate, a loss of certainty in the future that was what they wanted, loss of trust in the world as a safe place, loss of feelings of freedom over your own body, the loss of support for people who have lesser means than the rest of us do, the loss of support for your neighbor and people who are different from you.鈥�

Election grief has a tendency to debilitate us, leaving us in a frozen or shutdown state. This information is worth paying attention to, especially when it is critical to stay focused and mobilized as the state of democracy is increasingly threatened. As we participate in more collective actions, we need to find places of retreat to sustain our commitments to social justice.

With , Filipinos in the diaspora have been co-creating places of healing and restoration. Three of these community spaces have been actively seeding and tending cultures of both rest and solidarity. Who are they, and what can we learn from them?

Centering International Solidarity

Pinay Collection is a feminist brand with a team of 15 Filipino members from both the homeland and the diaspora. The social enterprise helps diasporic Filipinos reconnect with Filipino culture by , , and writing articles about the struggles in the motherland, including , , and .

Founder Jovie Galit created Pinay Collection in 2019 to 鈥渁mplify [the] voices of the masses鈥� and to 鈥渞ethink [the] ways we tell stories [about Philippines-based Filipinos] that resonate with the people of the diaspora so that they [take] action.鈥� Galit dreams of using Pinay Collection to create a more grounded form of reconnecting in which diasporic Filipinos do not neglect the struggles of the exploitation and state violence in the homeland.

鈥淭here鈥檚 so much urgency in the work,鈥� Galit shares. 鈥淒oing this work with Pinay Collection, I鈥檝e come to understand how activists back home [in the Philippines] do their work. I see the need to be out there [on the ground].鈥�

Galit, who was raised in the Philippines, migrated to Canada at 19. When she relocated, she noticed some diasporic Filipinos were reclaiming Filipino culture and identity without developing an awareness about systemic issues within the Philippines.

鈥淭here鈥檚 beauty in [decolonization], [but] there鈥檚 also the privilege of being able to reflect on who we are, our identity, and our connection to Filipino culture versus Filipino people [in the Philippines] who are organizing to survive,鈥� Galit says. 鈥淎s much as it鈥檚 important to understand who we are, it鈥檚 also important for us to [turn] that understanding into mobilizing and organizing.鈥�

Galit believes international solidarity is essential to reclaiming Filipino identity, especially for those living in North America. As the archipelago country faces incessant and , Galit says it becomes 鈥渄issonant not to address [these] real issues.鈥� That鈥檚 the reason Pinay Collection has an emergency fund for typhoon relief as well as , farmers, impoverished people, and other marginalized groups in the country.

Galit hopes for a time when Pinay Collection doesn鈥檛 need to exist because the work of liberation is more realized. 鈥淭hat means we created a more sustainable structure for community organizations to thrive or maybe that means that communities of the diaspora are really honed in doing international solidarity work with Filipinos back home.鈥�

Ultimately, A Resting Place, the Reimagination Lab, and Pinay Collection are offering spaces that, as Rodriguez explains, are 鈥渓ess in the space of a resistance and dismantling an unjust system but really in the space of creatively imagining, manifesting a different kind of future.鈥�

While enslaved people were intentionally kept illiterate, the abolitionist movement still treated these pamphlets鈥攁nd antislavery newspapers鈥攁s signposts, signaling that even amid their suffering, enslaved people were being fought for. Their human condition wasn鈥檛 being disregarded in favor of profit; instead, there was a growing movement advocating for their freedom and for their right to lead a self-determined life. 

In her new book, , Tricia Hersey calls upon some of these same abolitionist tools, including pamphlets, hymnals, poetry, and imagery, to convey a similarly urgent message: If we do not take rest seriously and divorce ourselves from capitalism, we will die much sooner than we should. While that might feel alarmist, it鈥檚 a message Hersey has been conveying for years as the . The 鈥溾€� uses her own life as a model for how we can collectively escape 鈥済rind culture鈥� and embrace rest as a spiritual practice. 

鈥淚 thought I would die,鈥� Hersey writes in We Will Rest!, an unconventional manifesto and meditation about how she learned to care for herself in a world that doesn鈥檛 allow us to slow down. 鈥淚 thought the exhaustion of capitalism would crush me. Rest saved my life.鈥� As Hersey often reminds us: Rest is a matter of life and death. 

Rest is essential to our long-term survival as individuals and a collective. Birthing a creative renaissance requires rest that isn鈥檛 reliant on productivity. Hersey鈥檚 book calls upon our ancestors, including Harriet Tubman, the Underground Railroad conductor who , to become escape artists ourselves鈥攖o help unchain our imaginations from the bounds of capitalism and embrace new possibilities. 鈥淎苍测辞苍别 in this culture who believes and feels they are enough right now has begun the escape artist transformation,鈥� Hersey writes. 鈥淭o know in the deepest parts of your soul that your birth grants you divinity, rest, care, and power is a seed planted in fertile ground.鈥� 

Much like those abolitionist pamphlets, We Will Rest! serves as a guidepost for those who seek rest but are unsure if it鈥檚 available to them. The book begins with a thought-provoking question: 鈥淗ow do you find rest in a capitalist, white supremacist, patriarchal, ableist system?鈥� This system teaches us that rest must be earned through work, and received with humble gratitude. But Hersey offers an alternative: If we become 鈥渆scape artists鈥� or 鈥渢ricksters鈥� who defy systems that discourage us from rest, then we can prioritize our needs. 

For Black people, in particular, Hersey accurately argues that rest is our ancestral inheritance and must be protected at all costs. 鈥淭he first step for morphing into an escape artist is belief,鈥� she writes. 鈥淵ou must believe you have the power to refuse. You must believe you have been gifted with everything necessary. You must be a trickster. No matter what, you must not show fear. We are abundant.鈥� 

Once we believe we鈥檙e entitled to rest and our ancestors have paved the way for us to claim this birthright, then we must imagine the life we desire for ourselves. 鈥淐reate community,鈥� Hersey writes. 鈥淏e community. Community care can seem impossible when you are exhausted. It is possible.鈥� It is only through crafting this community鈥� day by day, moment by moment, and person to person鈥攖hat change can come. 

It鈥檚 not as complicated as we might make it out to be. The world we imagine will come to us through silence, through daydreaming, and through unwavering belief. 鈥淓very day, morning or night, or whenever you can steal away, find silence,鈥� she writes. 鈥淓ven if for only a few minutes.鈥� 

We don鈥檛 need to have it all figured out to begin this personal and collective rest revolution. 鈥淐apitalism has a choke hold over our lives right now,鈥� Hersey writes. 鈥淭he next second, the next minute, the next hour, is ours to refuse the grind. We can craft and build temporary spaces of joy and freedom here now.鈥� 

Like those abolitionist pamphlets, We Will Rest! offers encouragement in times of uncertainty鈥攁 reminder of our fundamental humanity, and affirms the truth that rest is ours for the taking. And we鈥檝e already done all we need to do to 鈥渄eserve鈥� the freedom it brings. 

This is Patrick Blindauer鈥檚 last puzzle for 猫咪社区! as he moves on to new projects. We would like to thank Patrick for all the engaging and thoughtful puzzles he鈥檚 contributed since our Spring 2018 issue. 

A sus 19 a帽os, se dirig铆a a Canad谩. Ella ser铆a la primera de su familia en ir a la universidad en el extranjero. Todos sus familiares vinieron al aeropuerto para la despedida. Ella recuerda el adi贸s como un momento desgarrador. En ese momento, a Chavan y a su familia les result贸 dif铆cil comprender plenamente el sacrificio que implica migrar. 鈥淣o ten铆amos idea de lo que significa dejar tu hogar,” dijo.

Una nota de los editores: Esta historia ha sido traducida al espa帽ol por . Puede leerla en ingl茅s 补辩耻铆.
(Editor鈥檚 note: This story has been translated into Spanish by . You can read the story in English here.)

Pero inevitablemente, el duelo lleg贸 a sus vidas. Casi doce a帽os despu茅s de la partida de Chavan, mientras se encontraba sentada en su departamento en Winnipeg a principios del 2020, Chavan sinti贸 un nudo en el est贸mago cuando su mam谩 le llam贸 por tel茅fono para compartir la noticia. La abuela de Chavan, quien viv铆a en Sidney, Australia, se hab铆a enfermado y, tras unas cuantas semanas, hab铆a fallecido. Su abuela hab铆a sido una de las personas m谩s importantes en su vida, pero Chavan no ten铆a manera de ir a Australia para llorarla en persona. Adem谩s del costo de los boletos de avi贸n, no contaba con la visa necesaria para ingresar al pa铆s, ni con el presupuesto necesario para solicitarla. Ante esta situaci贸n, Chavan se apag贸 emocionalmente. 鈥淢e sent铆 congelada por un largo tiempo,鈥� explic贸.

Los expertos en temas de migraci贸n y psicolog铆a usan los t茅rminos 鈥渄uelo transnacional鈥� o 鈥渓uto transnacional鈥� para describir esta experiencia, la cual se refiere a la p茅rdida de un ser querido estando en otro pa铆s. Aunque el duelo en s铆 es un proceso dif铆cil, los inmigrantes que experimentan el duelo transnacional frecuentemente enfrentan sentimientos adicionales de culpa, negaci贸n y sufrimiento, ya que les es imposible asistir a los rituales de luto de sus seres queridos. 

La imposibilidad de ver a sus seres queridos en persona complica lograr una sensaci贸n de cierre, y el doliente puede sentirse incapaz de procesar la p茅rdida y seguir con su vida de una manera sana. En a帽os recientes, esta experiencia se ha vuelto m谩s com煤n, ya que el COVID-19 acab贸 con millones de vidas, y simult谩neamente caus贸 que aumentaran las restricciones fronterizas. La pandemia resalt贸 la importancia del apoyo comunitario y los cambios a las pol铆ticas migratorias para ayudar a aquellos que enfrentan sus duelos desde lejos.

El Dolor de la P茅rdida a Larga Distancia

Desde hace mucho tiempo, experimentar el duelo a larga distancia ha sido la realidad de muchos inmigrantes. Cualquiera que deja a su familia atr谩s tambi茅n corre el riesgo de estar separado de sus seres queridos durante tiempos de p茅rdida. Esto frecuentemente conlleva un torbellino de emociones complicadas.

鈥淗ay un fuerte sentimiento de culpa. Hay un fuerte sentimiento de arrepentimiento de no haber podido estar con su ser querido al momento de su muerte,鈥� explic贸 , una investigadora del duelo, de la Universidad de Alberta. Ella recuerda una conversaci贸n que tuvo cuando entrevist贸 a un inmigrante Iran铆-Canadiense, quien hab铆a perdido a su hermano durante las cuarentenas de la pandemia del COVID. Porque no le fue posible viajar a Ir谩n, o siquiera ver su cuerpo antes de que fuera enterrado, se negaba a aceptar la muerte de su hermano.

Chavan recuerda experiencias similares que sufri贸 al estar separada de su familia por fronteras despu茅s de la muerte de su abuela. 鈥淪ent铆a que no ten铆a derecho a llorar su muerte, porque no hab铆a estado ah铆,鈥� dijo.

Sin este espacio para llevar luto, el duelo puede volverse dif铆cil de superar; especialmente para los inmigrantes indocumentados. , una soci贸loga en el Center for Racial Justice de la Universidad de Michigan, trabaja con estas comunidades, y cont铆nuamente escucha sobre c贸mo el duelo afecta la vida cotidiana. 鈥淟as personas describen estas experiencias de duelo y luto a larga distancia como una de las partes m谩s dif铆ciles de estar indocumentado en Estados Unidos,鈥� explic贸.

Por ejemplo, mientras estudiaba entre el 2017 y el 2023, Fullerton Rico conoci贸 a una mujer a quien llama Florencia (un pseud贸nimo usado para proteger su privacidad), quien dijo: 鈥淓ra algo que no hab铆a de qu茅 manera poderlo arreglar. No queda de otra m谩s que aceptar que no puedes hacer nada.鈥� Fullerton Rico tambi茅n comparte una conversaci贸n que tuvo con un hombre a quien llama Felipe: 鈥淔elipe me dijo que el duelo te cambia profundamente.鈥� La distancia aumenta el dolor del duelo porque es imposible decir adi贸s o asistir a un funeral, y esto impide obtener una sensaci贸n de cierre. 鈥淗ay un cap铆tulo que no se cerr贸, que est谩 como abierto,鈥� explic贸 Felipe. 

 El peso del duelo transnacional frecuentemente es una carga soportada en soledad, lo cual agrava la situaci贸n. 鈥淣o es algo que se suele reconocer abiertamente,鈥� explic贸 Fullerton Rico.

Acortando la Distancia

Los rituales sociales, en cualquier cultura, son una parte importante del proceso del duelo. Los velorios y otras conmemoraciones pueden ayudar a la gente a pensar activamente en la persona difunta, dice , una neurocient铆fica que estudia el duelo en la Universidad de Colorado en Boulder. 鈥淧ensar en estas memorias le permite a tu cerebro como鈥� remodelar y pensar en c贸mo encajan esas memorias ahora en tu vida,鈥� dice ella. Pero para aquellos quienes est谩n lejos al momento de la muerte y no pueden asistir al funeral en persona, este proceso puede ser mucho m谩s dif铆cil o quedar inconcluso.

, una psic贸loga que trabaja con expatriados, ayuda a sus clientes a crear sus propios rituales para que cada uno pueda conmemorar su relaci贸n con su ser querido de una manera 煤nica. Ella los gu铆a a trav茅s del proceso del duelo a larga distancia, usando acciones como escribir cartas, comer la comida favorita de un ser querido, o participar en una actividad que sol铆an hacer juntos. El proceso toma tiempo. Frecuentemente son necesarias varias sesiones de adioses y rituales para que alguien haga las paces con una muerte repentina, dice Encina.

Similarmente, durante la pandemia, Chavan encontr贸 su propia manera de enfrentar el duelo a trav茅s de la escritura. Ella hab铆a perdido su trabajo en ese tiempo y decidi贸 asistir a una clase de escritura. As铆 inici贸 un proyecto de 鈥渘o-ficci贸n creativa鈥� que le permit铆a sumergirse en sus experiencias con el duelo transnacional. Chavan lentamente rompi贸 el hielo que hab铆a encerrado a su coraz贸n por ocho meses. Sollozaba mientras recordaba todos los detalles de su abuela: los debates en茅rgicos que juntas ten铆an, c贸mo dominaba los lugares a pesar de su peque帽o tama帽o, c贸mo reforzaba los lazos familiares con su amor.

鈥淔ue horrible. Fue devastador. Se sinti贸 como perderla de nuevo,鈥� Chavan dijo.

Pero fueron estos actos de escribir y recordar los que le permitieron reconectarse a sus memorias鈥� Y empezar a sanar.

Soluciones Sist茅micas

Apoyar el duelo transnacional requiere que reconsideremos la forma en la que pensamos acerca de la inmigraci贸n y la p茅rdida. Actualmente, pocos inmigrantes indocumentados pueden ajustar su estado migratorio en los Estados Unidos. Los pocos que son elegibles t铆picamente reciben una autorizaci贸n de trabajo antes de tener la opci贸n de viajar de visita a su pa铆s de origen, y toma a帽os para que obtengan la residencia permanente legal, explic贸 Fullerton Rico.  Es as铆 que la oportunidad de visitar a sus seres queridos se vuelve una espera alargada, incluso mientras ellos envejecen o fallecen. Para muchos, es una espera sin fin.

鈥淪i aprobamos leyes que le den prioridad a crear un camino r谩pido hacia la ciudadan铆a, podr铆amos evitar que las personas tengan que vivir estas experiencias,鈥� dijo Fullerton Rico.

Muchos inmigrantes indocumentados tambi茅n tienen trabajos inflexibles y de salarios bajos, lo cual los presiona a tomar decisiones dolorosas, como ver los funerales de sus seres queridos a trav茅s de su celular mientras ayudan a los clientes o preparan comidas en un restaurante. 鈥淓n lugar de estar ah铆 en persona, ellos tuvieron que escaparse al ba帽o, o esconderse en una c谩mara frigor铆fica para tener vistazos de uno de los rituales m谩s significativos en la vida de una persona,鈥� dice Fullerton Rico.

El permiso remunerado beneficia a las personas que est谩n procesando un duelo. Esto les permite a los dolientes tomarse tiempo libre de sus trabajos sin tener que asumir las consecuencias potenciales de perder un cheque de pago o sus mismos trabajos. Chavan recuerda la presi贸n de continuar su trabajo en medio de su duelo porque no ten铆a la flexibilidad financiera para perder horas de trabajo pagadas, lo cual gradualmente degrad贸 su salud mental. En la actualidad, solo cinco estados de los E.E.U.U. requieren que los empleadores den permiso de faltar a causa de duelo, dice Fullerton Rico, y solo dos de esos estados requieren que los empleados sigan siendo pagados durante este periodo.

Tambi茅n es crucial 鈥渉acerle saber a las personas que no est谩n solas en este dolor,鈥� dice Fullerton Rico. Ella considera que es necesario que m谩s organizaciones que apoyan a los inmigrantes reconozcan esta realidad y brinden apoyo para lidiar con el duelo transnacional. Por ejemplo, podr铆an ayudar a los inmigrantes a tener acceso a terapia, ofrecer otros recursos de salud mental, o ayudar a organizar rituales religiosos para que puedan conmemorar a sus seres queridos desde lejos. As铆, los dolientes enfrentando el duelo transnacional correr铆an menos riesgo de condiciones como la depresi贸n cl铆nica. Ella comparte el ejemplo de un sacerdote cat贸lico que entrevist贸 en la ciudad de Nueva York, quien ha ayudado a realizar misas memoriales para dolientes transnacionales desde los 1990s. Hoy en d铆a, estas ceremonias funerarias son transmitidas a trav茅s de Facebook Live, YouTube o Zoom, ayudando a las familias a sentir alg煤n grado de cercan铆a.

Los expertos coinciden en que la formaci贸n de este apoyo social es un factor clave en el proceso de duelo. 鈥淓l duelo es algo as铆 como una experiencia social,鈥� dice Bayatrizi. 鈥淓s una experiencia emocional que es formada a trav茅s de nuestras interacciones sociales.鈥�

Chavan dice que la 煤nica raz贸n por la cual ella finalmente se sinti贸 lista para afrontar las emociones fue gracias a que su pareja y sus suegros fueron solidarios, provey茅ndole una comunidad peque帽a pero fuerte en un tiempo aislante. Tras escribir acerca de la experiencia, ella tambi茅n comenz贸 a tener m谩s conversaciones con familiares y amigos alrededor del mundo quienes hab铆an le铆do su art铆culo, sobre el dolor del duelo a larga distancia y c贸mo lo hab铆an afrontado ellos.

鈥淓sencialmente, llegu茅 a tener una comunidad, una comunidad global a la cual yo pod铆a recurrir,鈥� dice ella. 鈥淐omprender que no eres la 煤nica persona que ha pasado por una situaci贸n dif铆cil puede ser una gran ayuda.鈥�

CORRECTION: This article was updated at 3:29 p.m. PT on Nov. 11, 2024, to correct a few translation and production errors.听Read our corrections policy here.

Tattooing is a reclamation of my body, 
where I consensually welcome a wound 
as opposed to the ones that violently invaded my being, 
physical and otherwise. 

Tattooing is a sacred 鈥渇uck you鈥� to colonizers and their attempted erasure of us,
while labeling the ink on our skin as dirty and demonic

Tattooing is a holy permanence on my brown skin,
a deliberate reverence to Indigenous ancestors, whose tattoos 
symbolized honor, achievement, and beauty.

Tattooing is a reiteration of 鈥渂y [my] wounds, [I] am healed.鈥�

鈥攑ersonal notes from the evening I got my first tattoo in 2022

Our bodies carry stories and there are many ways to tell them, with various types of ink and alternatives to paper.

For centuries, tattooing has represented much more than mere aesthetic or a tough facade. The majority of Western cultures and religious traditions have associated tattoos with criminality, primitivity, and other forms of unsophistication. For most Christians, tattoos are biblically forbidden, with verses like Leviticus 19:28 instructing to 鈥渘ot cut your bodies for the dead or put tattoo marks on yourselves.鈥� The case is vastly different for communities outside the West鈥攅specially to Indigenous peoples. Tattooing is medicinal and sacred, symbolizing a person鈥檚 great milestones, beauty, and bravery. Tattooing is more than decorative: It is a form of devotion to one鈥檚 true self and community.

Artistically and resolutely, many of the colonized today counteract the violence of cultural and religious erasure by getting inked. For others, tattooing is a form of body liberation and healing: Choosing to mark one鈥檚 body and determining which designs to be permanently marked with is a reclamation. 

One Saturday morning, I had breakfast with tattoo artists and at , a tattoo and piercing studio in Manila, Philippines. We gathered to have conversations on tattooing, which began with the topic of body autonomy. Lacsamana, who is also an illustrator and author, shared that growing up in a Catholic and conservative academic family, she got her tattoos in secret. This shifted over time when Lacsamana started choosing body placements that appeared more visible to others. But early in her tattoo journey, she recognized the courage that younger Wiji already had before getting inked, even while hiding. Every tattoo was a declaration of self: 鈥淭his is my body.鈥� Similarly, Lacsamana believes that whenever a person gets a tattoo, 鈥淵ou are becoming more 鈥業 am鈥欌€攎ore yourself.鈥�

Indigenous communities across the globe also consider tattooing as a preservation and amplification of cultural integrity and belonging.

This coincides with co-founder of 鈥檚 words on the connection between tattooing and body reclamation. In an interview with Welcome to Chinatown, :

鈥淭attooing is a tradition that has been alive and breathed in new life in our generation. As a queer Asian American, I found a community in tattooing that is all about reclaiming our bodies and our identity. The generational trauma of feeling like our bodies belong to our parents, or belong to the male gaze all fall apart when we are in a space that accepts our nuance in a collective embrace. Being able to hold a physical space for that feels sacred.鈥�

The connection between body agency and tattooing isn鈥檛 just about separating from oppressive social conditions but also includes the choice to (re)connect to one鈥檚 community or lineage.

In the powerful documentary , S膩moan tattooist Rosanna Raymond shares her experience with the art of the tatau, and specifically, the malu for women. She shares that the cultural symbols tattooed by and for women are not to be easily 鈥減ut away in the cupboard.鈥� Once tattooed, 鈥測ou are present with your ancestors every day,鈥� because of how these symbols are infused with history and heritage.

Dulcie Stewart of when she had her tattoos done with Julia Mage鈥檃u Gray at 鈥�veiqia, or weniqia, is a tattooing practice in Fiji where young, pubescent women receive veiqia by the daubati, elder women tattooists, as an initiation to womanhood. Stewart shares her experience:

鈥淎t my first session with her, Julia marked me by reconstructing weniqia (tattoo patterns and designs) based on 1870s sketches of Fijian women that we both had seen online. Over the years the process changed, the marks became personal and were based on familial designs. Being marked by Julia is an emotional and personal process, with each marking telling a story relating to different parts of your life; each tap revealing a memory and healing the soul.鈥�

Indigenous communities across the globe also consider tattooing as a preservation and amplification of cultural integrity and belonging. Recently, , the venerable Apo Whang-Od. The article not only decentralized beauty standards (鈥渦nmarked women were considered imperfect, undesirable鈥�) that are widely imposed and commodified, but also recognized the tradition of , marking the skin through hand-tapping, as a sacred heritage of the Kalinga tribe. remarked in one of the episodes of the series that the sound of hand-tapping is like a 鈥渞hythm that wakes the ancestors.鈥� The Onaman Collective, on the other hand, revitalizes the tradition of tattooing as a way to subvert the shame imposed by the church and government by marking the skin with sacred symbols to commemorate their achievements, healing, and visions. A member of the collective, Alethea Arnaquq-Baril, calls on non-Indigenous folks not to use the same spiritual symbols of their tradition. She says, 鈥淭here are many other ways to honor our culture without appropriating it.鈥�

For those of us who are non-Indigenous, we can still get tattoos as a way to honor ourselves and our lineages without culturally appropriating Indigenous traditions. For example, I was at a coffee shop one day and noticed a beautifully detailed illustration of a piece of , the cheese-filled pretzel snack, on the barista鈥檚 arm. At first, I thought it was such a unique and quirky image to have on his skin. I inquired more and learned that Combos were the snack he and his grandmother shared during his childhood. Now that she has passed, my new barista friend honors her memory with this permanent mark that represents their bond. This encounter shows how we can still honor our heritage without appropriating that of another, especially when the sacred symbols are only tattooed when earned and/or inherited within a specific tribe.

There is something medicinal in choosing the kinds of scars that mark us.

Alaga, a tattoo apprentice and artist, considers tattooing a form of ceremony and celebration. As someone who was raised surrounded by strict conditions of what it means to be accepted, Alaga鈥檚 first experience with tattooing was an introduction to empathy: the kind of empathy that softens the internalized rules and the need to defend themself and their identity. Serendipitously, their first tattoo was placed on the throat, which, based on Chinese medicine, indicates that the tattoo will activate healing for the closest meridian. Similar to acupuncture, tattooing uses needles, thus stimulating this channel of energy via penetration of the skin. Alaga鈥檚 tattoo then stimulated and released the blockage residing in their throat, enabling them to speak their truth and take back their power from a life that formerly hid their identity and denied their reality. They say that tattooing offers 鈥渢he beautiful potential [for the] physical wound to open up a portal,鈥� enabling the spiritual and physical wound to heal in tandem. Other that tattooing has the potential to build immunity because of the body鈥檚 strengthened agility and immunological defenses. (However, this is not always the case for all bodies, especially for the immunocompromised and those with certain autoimmune conditions.)听

Toward the end of our time together, I asked Alaga and Lacsamana about their hopes in the world of tattooing. Alaga reflected on a future where tattooing 鈥渨as more accessible to everyone. Art doesn鈥檛 choose, especially among class. It鈥檚 the studio鈥檚 responsibility to have a sliding scale.鈥� In addition to this, I also wonder what it鈥檚 like for tattoo artists to use their work as a platform for solidarity in social movements. For instance, is a Filipino organizer who was incarcerated for defending land and human rights. Tattoo artists in Manila have joined the by offering , with a portion of their proceeds redistributed to free Echanis, whose three-year-old child joins her in prison. The tattooing campaign will continue on until Echanis is freed.

Alaga and Lacsamana share a similar hope to have more women and queer folks in the tattooing world, as studios have been predominantly masculine in the Philippines. Because tattooing is a vulnerable endeavor for the client, a warmer and perhaps more nurturing energy can provide safer spaces that honor the client鈥檚 trust and boundaries. Lacsamana also desires to reframe ideas surrounding femininity and tattoo designs. Floral and soft designs are often mocked and belittled, to which she responds, 鈥淲hy is girliness a bad thing? I love stepping into my femininity.鈥� She hopes that the tattoo world may welcome the interplay of softness and fierceness, power and gentleness, when it comes to tattoo design selection.

Lacsamana imagines tattooing as a way to give talismans to her clients. She shares that the process turns the client鈥檚 vision into something tangible, and, by embedding it onto the skin, 鈥渁lchemizing tattoos into a talisman.鈥� As a tattoo artist, she understands the mutual healing of this process, being a witness and creator who illustrates chapters of other people鈥檚 lives on their bodies. 

There is something medicinal in choosing the kinds of scars that mark us. In these practices, we get to decide on these wounds and welcome them, as opposed to the ones that invade us without our consent. Through catharsis and colors, we are free. By our own wounds, we heal.

As both a facilitator and a participant in group experiences, I鈥檝e witnessed firsthand the transformative power of well-held containers. I remember one particularly memorable session when I unintentionally triggered traumatic memories for some participants. That was a wake-up call for me. It underscored the importance of taking people only as far as I鈥檝e gone, and being mindful of my social location and privileges and their potential impact on group dynamics. It reiterated and the need to create resilient and supportive spaces for all, in ways that honor everyone鈥檚 identities and prioritize their well-being.

I鈥檝e also experienced the profound benefits of well-held containers. A guided visualization that asked me to imagine saying final goodbyes to loved ones was particularly transformative. In that session, the facilitators created a sacred space among us participants and gradually increased the risk we took while building trust. This showed me the power of building trustworthy relationships, facilitated rituals, and consensual boundaries in fostering deep exploration and growth.

Creating a transformative container鈥攁 space where magic can unfold and meaningful change can occur鈥攊s something I approach with deep intentionality, wisdom, and an understanding of the principles that guide such a process. For me, it鈥檚 not just about setting the stage; it鈥檚 about cultivating an environment where individuals can safely explore, grow, and transform. Here鈥檚 how I approach this work:

1. Set a Vibe鈥攁nd Keep It Going

The energy I bring to a space sets the tone for everything that follows. Whether through lighting, music, scent, or even the way I greet participants, I am creating an atmosphere that signals what鈥檚 possible. Setting a vibe isn鈥檛 a one-time act; it鈥檚 an ongoing practice throughout the experience. I work to maintain that energy, ensuring that it aligns with the goals of the session, and I adapt as needed to keep everyone in the right headspace and heartspace. For instance, I鈥檝e found that a carefully chosen playlist can guide the emotional flow of a session, from energizing participants at the start to creating moments of introspection and reflection later on.

2. Reveal the Context and Beware of Assumptions

Transparency is critical in creating a container for transformation. I make it a point to reveal the context鈥攚hy we鈥檙e here, what the goals are, what鈥檚 at stake鈥攖o help participants understand the bigger picture and feel more connected to the process. This helps to minimize misunderstandings and assumptions that could lead to tension or disengagement. I strive to be clear about my intentions, the purpose of the session, and any background information that could influence the direction of our work. The more context I provide, the more equipped participants are to engage fully and authentically.

3. Containers Need Boundaries to Be Able to Contain

A container without boundaries can鈥檛 hold the energy, emotions, and transformations that occur within it. I believe boundaries define the space鈥攑hysically, emotionally, and energetically. They create safety by delineating what is acceptable and what is not, allowing participants to explore and take risks within a defined framework. Clear boundaries prevent the container from becoming chaotic or overwhelming, ensuring that the energy within is focused and purposeful.

4. Consent Is Key 

For boundaries to be effective, there must be mutual consent. Everyone involved needs to agree on the rules of engagement. I usually start sessions by co-creating explicit agreements, where participants commit to respecting the space, each other, and the process. This ensures that everyone is on the same page and feels respected, which is essential for maintaining trust and safety within the container. Without consent, boundaries can feel imposed and restrictive rather than supportive and empowering.

5. Face the Tensions in Justice-Loving Ways

Transformation often involves surfacing tensions鈥攗nspoken conflicts, buried emotions, or systemic injustices. I see these tensions not as obstacles but as opportunities for growth and healing. To navigate them effectively, I prepare myself to face them with love, justice, and a commitment to liberation for all. This means creating space for difficult conversations, acknowledging power dynamics, and addressing issues in ways that honor the dignity and humanity of everyone involved. Justice-loving practices ensure that the process of transformation isn鈥檛 just about personal growth but also about collective liberation.

6. Shape Change and Be Changed

I鈥檝e learned that transformation isn鈥檛 a linear process but an emergent one. It evolves as the group evolves, adapting to new insights, challenges, and opportunities. I draw from the principles and elements of emergent strategy, which emphasizes the importance of being responsive and flexible in the face of change. Rather than imposing a rigid plan, I allow the process to unfold organically, shaping change as it happens. This requires me to be open to being changed myself鈥攍earning from the process, adapting my approach, and growing alongside the participants. It鈥檚 about co-creating the path forward, guided by the collective wisdom of the group.

7. Bring Everything and Everyone With You

When I鈥檓 creating a transformative container, I bring all of myself鈥攎y knowledge, experiences, skills, and even my personal quirks. This includes everything from my outfit selection to my playlist, my understanding of feng shui, my knowledge of Indigenous circle practices, and my love of Latin root words. Each element I bring adds richness and depth to the space, making it uniquely mine鈥攁nd uniquely capable of holding the transformation that needs to happen. By bringing everything and everyone with me, I create a space that鈥檚 not only authentic but also inclusive, where every aspect of the self鈥攂oth mine and others鈥欌€攊s welcomed and valued.

8. Be Trustworthy

Trust is the foundation of any transformative container. Participants need to know that they can rely on me to hold the space with integrity, care, and consistency. Being trustworthy means showing up fully, honoring my commitments, and being transparent about my intentions and limitations. It also involves creating an environment where participants can trust each other, fostering a sense of safety and mutual respect. Trust allows participants to take the risks necessary for deep transformation, knowing that they are supported and held throughout the process.

9. Practice Till Presence

Presence is the ability to be fully in the moment, attuned to what is happening within the container. It鈥檚 about listening deeply, observing closely, and responding authentically to the needs of the group. Achieving this level of presence requires practice鈥攃ultivating mindfulness, grounding myself, and honing my ability to stay focused and connected. The more I practice, the more naturally presence will come to me, allowing me to be fully available to the group and the process. Presence is the key to facilitating transformation with grace, fluidity, and impact.

As I reflect on these principles, I encourage you to think about how you can incorporate them into your practice鈥攚hether you鈥檙e creating formal containers for group participation, or informal ones as you build and co-create community. What unique elements do you bring to the table? How can you cultivate a sense of trust, presence, and adaptability in your work? By integrating these principles, we can create containers that not only hold space for transformation but actively foster it, allowing magic to unfold and change to take root in profound and liberating ways.

鈥淲e always say that art ignites change,鈥� says Jane Golden, the organization鈥檚 executive director. 鈥淭here is something deeply catalytic about the work.鈥�

Researchers agree: Studies show that public art has a host of benefits for communities. Its community-building powers can . When locals participate in creating public art, these effects are amplified. A 2018 London-based survey found that believed participating in public art projects benefited their well-being. 

Murals, in particular, are great for artistic placemaking and city marketing.

Public art also provides economic benefits, including new jobs and increased tourism. Murals, in particular, are great for artistic placemaking and city marketing. It鈥檚 no surprise that art-focused bus and walking tours have grown popular in dozens of cities in recent years, from London, England, and Sao Paulo, Brazil, , where the city-led program has been funding public art for more than 30 years. 

Elsewhere, public art is used to . For example, last year in Cincinnati, Ohio, nonprofit organization created a to light a popular walking trail in the Avondale neighborhood. The installation has aesthetic benefits, but it has also improved the neighborhood鈥檚 walkability and residents鈥� safety after dark.

ArtWorks also provides economic benefits to Cincinnati residents. It creates jobs and fosters youth development through an apprenticeship program. Since its founding in 1996, the organization has employed more than 4,000 young people, ages 14鈥�21, and 3,000 professional artists and creatives in art projects throughout the city. 

鈥淥ur apprentices are being mentored by professional artists on the job,鈥� explains Sydney Fine, senior director of impact at ArtWorks. 鈥淪o beyond being an arts nonprofit, we are also in many ways a career-readiness, positive youth development organization.鈥�

鈥嬧€婳ften, we look to public art as a way to address a challenge that a city is looking to solve.

However, one of the most meaningful effects of public art is that it creates what urban designer Mitchell Reardon calls 鈥渃ommunity fingerprints鈥濃€攕paces that make people feel represented, foster community ties, and give people a sense of ownership and belonging in their neighborhoods.

As a senior planner at Vancouver-based urban planning and design consultancy , Reardon has seen how public art serves communities. 鈥溾€嬧€婳ften, we look to public art as a way to address a challenge that a city is looking to solve鈥攕ay, a transportation issue or safe streets鈥攚hile doing so in a way that is going to be meaningful for a broader cross section of people,鈥� he explains. 

In the United States, public art depicting American communities carries on an artistic tradition that blossomed almost a century ago, when the Works Progress Administration, a Great Depression-era New Deal agency, began funding the visual arts. Through a program called the , the Works Progress Administration employed more than 10,000 artists, who created a significant body of public art, , between 1935 and 1943. 

According to Victoria Grieve, a historian of visual culture in America and author of , supporters of the Federal Art Project shared a belief in 鈥渢he relationship between the arts and the daily lives of the American people, and the educational, social, and economic benefits of widespread cultural access.鈥� 

Many of the murals produced during the period represented this ethos and belonged to an emerging artistic tradition called 鈥淎merican Scene Painting,鈥� a style of realism inspired by American history, mythology, and culture. Federal Art Project murals commissioned for airports, post offices, and public schools depicted the everyday lives and contributions of , American immigrants, and , meant to foster a shared 鈥淎merican鈥� cultural identity.

While the representation of people of color in public art during the period was often problematic, and New Deal programs , the Federal Art Project still had some upsides for the nation鈥檚 marginalized communities. According to Lauren Rebecca Sklaroff, author of , the program created needed opportunities for interracial cultural exchange and allowed artists of color to exercise 鈥渃ultural self-determination.鈥� 

In other words, New Deal funding and increased attention to public art allowed more artists鈥擭ative American, Chicano, Black, and Asian American鈥攖han ever before to paint their communities into American art. Those artists鈥� creations also allowed underrepresented communities to see themselves, perhaps for the first time, on the walls of their cities. Today, Mural Arts Philadelphia and ArtWorks honor the spirit of this work. 

James Daniel Burns, a staff artist at Mural Arts Philadelphia, has experienced this firsthand. 鈥淪ometimes, [a mural] can propel the identity of a place into fruition,鈥� he says.

Fine agrees. She says Louise Shropshire on the side of Avondale鈥檚 main recreation center has helped turn the location into a vibrant community hub. The mural was created in 2019 as part of a new quality-of-life plan for the neighborhood. 鈥淭he main focus of the plan is increasing safety and wellness,鈥� explains Fine. 鈥淎nd so, murals have been a part of that. Documenting the important historical figures that have come from a neighborhood and increasing that pride, which then further activates that neighborhood in that space,鈥� she explains.

Both Mural Arts Philadelphia and ArtWorks take great care to ensure locals feel represented in the murals in their neighborhoods. The organizations partner with local community leaders, organizers, and activists to plan and implement new projects. In Cincinnati, this process takes an average of eight months. At Mural Arts Philadelphia, things move much faster. Most of its murals begin with an application filed by someone living in the community where a project will be implemented. They鈥檙e expected to rally a community around the proposed project before applying. After that, creating a mural takes only 4 to 8 weeks. 鈥嬧€婣t the end of the process, Golden says people feel real ownership of the work.

The mural created a community of love, a community of care.

These collaborative planning processes also forge strong relationships within and between communities. Staff artist Burns says he has a trove of personal stories for each of the projects he has completed in Philadelphia, 鈥渞ooted in the relationships with people who shape these projects.鈥� 鈥嬧€�

Those relationships last long after the paint has dried. Golden says that Mural Arts Philadelphia also remains a fierce advocate for its art and the communities its projects foster after completion. A mural is an excellent example. The mural depicts a person alone in a small raft on a turbulent sea鈥攁 metaphor for the feelings that locals who had contemplated suicide described to Burns, the lead artist on the project. 

The mural, completed in 2012, resulted from a two-year-long collaboration between Mural Arts, the Department of Behavioral Health and Intellectual disAbility Services, and the American Foundation for Suicide Prevention. The project also engaged more than 1,200 community members. It was meant to shed light on youth suicide rates in Philadelphia, which were rising at the time, and provide a voice for survivors, attempters, and their families and friends. 

鈥淭he mural created a community of love, a community of care, where people kept coming together long after the mural was created and finished,鈥� Golden says. 鈥淚t was really inspiring.鈥�

When Mural Arts got word that a new dorm would be built in front of the mural, obstructing the view of it from the street, Golden says her team organized with the community that had contributed to the project and others in West Philadelphia. They sent a strong message to the developer. 鈥溾€楲ook,鈥� we said, 鈥榯his project is really important,鈥欌€� Golden says. The group was able to secure a donation from the developers to create a new mural. The new project, which is still in its early stages, will bring the same collaborators together again to create a mural with a similar vision in a central location. 

By holding developers accountable and addressing practical problems, such as street safety, organizations like Mural Arts Philadelphia and ArtWorks create clear value for their communities through their work. The same is true of dozens of other public art organizations, including the in Oakland, California; the in Portland, Oregon; and the in Chicago, Illinois. The work itself also fosters a sense of communal ownership over space, strengthens neighborhood ties, and allows folks to see themselves represented on the walls of their cities. The message it sends is clear: Public art is good for us and our cities. 

鈥淚 think a city that is vibrant and thriving has art right at the center,鈥� Golden says.

CORRECTION: This article was updated at 8:46 a.m. on Dec. 7, 2021, to correct the spelling of Sydney Fine鈥檚 name.听Read our corrections policy here.

Let me make it clear at the outset that this is a family affair; the whales about whom and on whose behalf I write are part of said family, as are you. I鈥檝e been building relationship with the community of whales who migrate from Bahia, Brazil, to Antarctica for the past seven years and sharing that process through my project, . It is from the depths of our shared oceanic origins that I bring you this offering.

Whale Whispering is an ancestral commission, an ode to water, a work of interspecies translation and co-creation between me, humpback whales, and other cetaceans and people. It is a diasporic healing quest, an exploration and transmutation of the legacy of transatlantic enslavement through music. Based in Praia do Forte, Bahia, Brazil, it is a soundtrack for personal, communal, and global transformation, a love song for whales, for Bahia, for Earth, for the ancestors, and for life. 

I鈥檓 listening to and singing with the whales to tap into the echoes of the Middle Passage contained within their songs, to bring forth sounds that honor Nature鈥檚 prescription for this time of reckoning and share water鈥檚 wisdom as it is relayed to me. Through underwater and studio recordings, filmed documentation, blog posts, and community gatherings focused on collective singing and water blessing rituals, Whale Whispering serves as a way of dreaming forward via the lens of the so-called past.

As I address the womb sickness that has affected my own womb and those of so many Black womb-carriers due to generations of sexual trauma, I鈥檓 learning to wail with the whales as a form of curative release, just as the Africans who crossed the Atlantic in slaving vessels surely did. This siren call, summoning awareness of the unity of all being(s), and resonating with the movement in support of planetary healing, is a vibrational antidote to the violence that threatens to engulf the planet right now. These messages, shared through waves of water and sound, affirm that, for those who are listening, Love鈥檚 song is stronger. 

has emerged as the central theme of this collaboration. With this echoing phrase the whales affirm that there is no reality in which we are not all connected to every other being, every other particle in existence鈥攖hrough our breathing, our intake and transpiration of water, our dreaming. Among their many offerings to the human members of their extended family is the gentle nudge to ask ourselves if we are dreaming big enough.

This is a question adrienne maree brown and I were exploring during one of our near the end of the Pandemic Pause, just as the wheels of the global economy (i.e., racial capitalism) were starting to churn back into gear. Via that conversation, I first relayed the whales鈥� message from the 2022 season. Clearly, the reduction in sonic, vibrational, and chemical interference in the oceans as a result of diminished shipping traffic had proven beneficial to them, and their perception of the retrograde slide toward pre鈥揅OVID-19 levels had moved them to make their most forceful, emphatic declaration thus far: 鈥淲e Will Run This World.鈥�

It is not lost on me that whales everywhere have proceeded to occupy increasing amounts of space in international news, asserting and claiming visibility and acknowledgement, demanding to be seen and heard. While I鈥檝e repeated their declaration a few times publicly since that interview, I鈥檝e mostly been listening and observing, wanting to be sure that any further details I bring forth about that statement are rooted in the clearest and sincerest point of connectivity between me and the whales. In my experience, this clarity requires time. Given their size, lifespan, and range of movement, it鈥檚 no surprise that the whales have their eyes on the long game with regard to guiding their human kin, as they watch what, to many, looks scarily like our imminent self-destruction.

Speaking of eyes, anyone who has had the rare and singular experience of gazing into the eye of a whale can attest to having met with a being of far vaster intelligence, sensitivity, and wisdom than most human minds can begin to fathom. Since living that wonder myself, I鈥檓 convinced that whales are capable of feats that would qualify as miraculous in any context. In considering the meaning behind the declaration that they will run this world, I鈥檓 compelled to lead with miracles. They could be as fantastical as the whales adjusting and accelerating their evolution in the blink of one of those knowing eyes, making them suddenly capable of living on land, communicating through language with humans as a whole, and deconstructing and restructuring the systems that have brought us to this point of global upheaval through direct intervention. My sense though, is that, per their nature, the whales intend something more nuanced and easily absorbed. 

Looking to the (technically dolphins, but whales by association) in the Strait of Gibraltar as an example, I see not as some type of revenge or retribution for human destructiveness, but as intentionally headline-grabbing activity drawing our attention to the rudders they have consistently disabled. They are pointing out faulty steering by humans, the ones who have been driving the planet to destruction, suggesting that a new way is needed. As far as I know, no one has died as a result of these encounters, but they have definitely put whales on many people鈥檚 minds.

By overturning boats, then , leaping onto and stealing the scene , among other shenanigans, the whales are impressing themselves upon collective human awareness. They are infiltrating our conscious and subconscious minds with suggestions to listen to their subaquatic songs and sounds. Through both our listening and the vibrational reverberations that result from playing their songs above water, the whales can infuse us with massive doses of compassion, pour into us and other species from the fount of grace to which they have access. 

Based on what the whales have shown me, their songs have the capacity to reverse so much of the damage caused by humans鈥攖hey could dissolve microplastics and oil spills, deactivate the harmful properties of chemical and other pollutants threatening the world鈥檚 water supply, and perhaps most importantly, soothe the indignation of our mothering planet, preventing her from wiping us out completely. But because fear, doubt, and subjugation to the nightmare spell of our current moment are so pervasive, and because most humans are living unaware of their own psychic impact, there has been a block on the extent to which the whales can wield their miracles鈥攁nd to which we can wield our own. From our fitful slumbering, the whales are calling us to lucidity, on behalf of all the species smaller and thus more easily ignorable than they are. They have visions of healing technologies that they can float into our imaginations, infusing them with solutions to such pressing issues as how to ensure safe, viable water for all, for example. Like so many plant spirits and human stewards, they are calling us to exalt the connective practices that Indigenous peoples worldwide have been preserving: to gather at and with water, joining our sung voices as sources of generative and regenerative force, engaging the Oneness that is the origin of all possibility.

It鈥檚 unlikely that every human will hear or answer this call. Only a critical mass of deeply engaged, genuinely receptive and open-hearted individuals is required to make way for the whales to steer us into a new dream. This whale-sized waking dream is one in which life on this planet is more balanced, healthy, just, and sustainable. It is one where the expansive generosity and compassion of these ancient beings have permeated the modus operandi of the planet鈥檚 powerful problem children鈥攈umans. 

While people will continue to hold鈥攁nd debate鈥攁 diversity of beliefs about spirituality, divinity, and the supernatural, everyone can agree that whales exist. And each one who opens themselves to imbibe the medicine the whales pour forth can taste the truth, can become imbued with the knowing that there is indeed a Higher Love, one that scales beyond what this current, shared reality suggests is real. Each one who receives that medicine and deepens into that knowing becomes a conduit for that Love鈥攐ne among the countless channels through which it flows, hydrating them with real magicalisms that have only awaited the acceptance of their own sublime potential in order to come true.

Are you One?

I imagine my dad鈥檚 disappointed spirit hovering over the Dodgers as they lost in the World Series. I invoke my mom鈥檚 stovetop magic as I figure out what to do with a bag of zucchini that must be cooked tonight. I remember the mothers who grieve their sons鈥� vibrant spirits every day, and I take a moment to send Snapchats to my beloved cuates. D铆a de los Muertos is so ingrained in my being that I am startled to see people in costume; my mind wonders for a second, 鈥淲hat鈥檚 that all about?鈥� This is amazing because I was so involved in Halloween while my children were growing up鈥攎aking costumes, figuring out the healthiest candy to hand out, trading my children鈥檚 candy for money so they were not overloaded with sugar (and I could store their loot for the next Halloween). In years past, I have hosted gatherings to decorate sugar skulls, loving this tradition of blending death with creativity. I treasured giving my children and their friends the chance to be playful and imaginative with something that so many people fear. As a writer, I live in that crevice of light and shadow, writing drafts only to end their existence for another version and then another and then yet another. I love the transparency of life and death, the calaveras that dance and meditate and watch TV. Each skeleton could be anyone of us, and one day we will know what our antepasados experienced after their last out-breath. One day we will see there is no separation between any of us, alive and dead.

The first and only altar in my 辫补谤别苍迟蝉鈥� home was the one we created on a cake after my dad鈥檚 funeral, laying out the detallitos of his life that he allowed to be visible. The secrets were still within him, wisps of energy that over the years encircled us with cari帽o or strangled our voices or tripped us as we ran. As I set up my altar year after year, I breathe in the musty smell of the newspapers I have carried from home to home. These crinkled papelitos wrap and unwrap memories and give space for those I loved and lost to whisper consejos in the stillness. I unbind my heart wounds and apply the salve gained from another year of living鈥攖hat little bit more of perspective and wisdom nestled in my coraz贸n that wraps around me like a soft, colorful rebozo. This essay appears by permission of the author, Linda Gonz谩les. Excerpted from Endangered Species, Enduring Values: An Anthology of San Francisco Area Writers and Artists of Color, edited by Shizue Seigel, Pease Press, 2018.

Hello sweet one. I see how much you care about the world, about your communities, about all of us surviving plagues and capitalism and a world on fire.

That clench in your throat, the knot in your gut, the tightness in your breath — this is how our bodies try to hold the world鈥檚 anguish. We write the wrongness into our bodies, a beautiful and devastating lament.

Just because your body can hold all the tragedy, the panic, the tension, that it is holding right now, that doesn鈥檛 mean that you must go on holding it, all, forever. The loving grandmother in you knows this to be true.

Set it down. Somewhere nearby, so you can pick it up again when you need to, but just for a moment, relinquish your illusions of control. Allow yourself to See the many-headed Truth monster: it might not all be okay. It might end in flames and death and horror, no matter what you do. Take a moment to acknowledge how fucking awful and sad that Truth is. And how not even the worst possible scenario would take away from your inherent worthiness.

Simultaneously, it is True that human beings have always fought for one another, cared for one another fiercely, and carried the world鈥檚 anguish in our bodies. And there are small Truths, like that we cannot control the future, no matter how much we wish we could. (Don鈥檛 worry when the Truths contradict one another, real Truths often do.)

No matter what, whether it turns out okay in the end or not, you carry the Divine within you. You are Enough, not because of the things you do but because of who you are fundamentally. Intrinsically. Always and without exception. Take a breath or two to allow yourself to Know this.

And when we pick up the anxiety again, let us aim for flexibility. Movement space for breath to get in and out of your rib cage, gentleness for the things we can鈥檛 do, and Integrity giving us the strength and resolve to turn our sometimes-excruciating caring into solidarity, mutual aid, and direct action.

We are each one person, breathing this one breath, with common Divinity.

We can do this. Together.

Note: This poem was an email response from my therapist when she closed her office because of coronavirus. The author has given permission for 猫咪社区! to publish it, but wishes to remain anonymous. 鈥擜yu Sutriasa

Then, inevitably, grief came knocking. Almost 12 years after Chavan鈥檚 departure, while she was sitting in her apartment in Winnipeg in early 2020, Chavan鈥檚 stomach dropped as her mom called with the news. Chavan鈥檚 grandmother, who lived in Sydney, Australia, had fallen sick, and over the course of a few weeks, had passed away. There was no way she could go to mourn in person for her grandmother, one of the most important people in her life. Flights to Australia were expensive, and she couldn鈥檛 afford to apply for the visa she would need to even get into the country. So instead, Chavan emotionally shut down. 鈥淚 felt very frozen for a very long time,鈥� she says.

Editor鈥檚 note: This story has been translated into Spanish by Kristina Fullerton Rico. You can read the story in Spanish here.
(Una nota de los redactores: Eso historia ha translado a espa帽ol por . Puede leerla en espa帽ol aqui.)

Migrant researchers and psychologists call what Chavan was experiencing transnational grief, or transnational bereavement. It refers to the unique experience of losing someone you love while in another country. Although grief is already a difficult process, immigrants who experience transnational grief often go through additional layers of guilt, denial, and suffering since they are unable to attend the typical rituals associated with loss.

The inability to see their loved one in person makes it difficult to achieve closure, and the bereaved may be unable to process the loss and move forward. In recent years, this reality has become more apparent, as COVID-19 claimed millions of lives while simultaneously forcing border restrictions. The pandemic further highlighted the critical role of community support and immigration policy shifts to help those who grieve from afar.

The Toll of Long-Distance Loss

Experiencing grief from a distance has long been the reality of immigrants. Anyone who leaves their family behind also risks being apart from their loved ones during times of loss鈥攁nd often this grief comes with a whirlwind of complicated emotions. 

鈥淭here is a strong sense of guilt. There is a strong sense of regret that they 飞别谤别苍鈥檛 able to be with their loved one as the loved one died,鈥� says , a grief researcher at the University of Alberta. She recalls a conversation she had when she interviewed an Iranian-Canadian immigrant who had lost their brother during the lockdowns in the COVID pandemic. Because they were unable to travel back home, or even see his body before it was buried, they refused to accept that their brother鈥檚 death was real.

Chavan recalls similar experiences, being separated by borders. 鈥淚 did not feel like I had permission to grieve, because I had not been there,鈥� she says.

Without this space to mourn, grief can become difficult to move past鈥攅specially for immigrants who are undocumented., a sociologist at the University of Michigan鈥檚 Center of Racial Justice, works with these communities, and continuously hears about how grief affects everyday lives. 鈥淧eople described these experiences of grief and long-distance mourning as one of the most difficult parts of being undocumented in the United States,鈥� she says.

For instance, while this phenomenon between 2017 and 2023, Fullerton Rico met a woman whom she calls Florencia (a pseudonym used to protect her privacy) who said, 鈥淲hen you experience grief [as an immigrant], your only option is to accept that you can鈥檛 do anything.鈥� Fullerton Rico also shares a conversation she had with a man she calls Felipe: 鈥淔elipe told me grief changes you deeply.鈥� The depth of that grief is exacerbated by distance when you can鈥檛 get closure from saying goodbye or attending a funeral, he told her. 鈥淚t鈥檚 a chapter with no ending, and it remains unfinished.鈥�

To make matters worse, the weight of transnational grief often remains a burden borne alone. 鈥淚t isn鈥檛 something that people usually talk about,鈥� Fullerton Rico says.

Bridging the Distance

Social rituals, in any culture, are an important part of the grieving process. Wakes and other celebrations of life can help people actively engage with memories of an individual, says, a neuroscientist who studies grief at the University of Colorado Boulder. 鈥淭hinking of these memories allows your brain to sort of remodel and think about how these memories now fit into your life,鈥� she says. But for those who don鈥檛 witness deaths or funerals in person, this process may be disrupted or made more difficult.

, a psychologist who works with expats, helps clients construct their own rituals so that they can celebrate their relationship with their loved one. She walks them through the process of grieving from afar, through actions like letter-writing, eating a loved one鈥檚 favorite meal, or participating in a favorite shared activity. The process takes time. Several sessions of goodbyes and rituals are often necessary for someone to make peace with a sudden death, says Encina.

Similarly, during the pandemic, Chavan found her own turning point for bereavement in creative nonfiction. She had lost her job at the time and decided to attend a writing class, taking on a project that allowed her to dive into her experiences with transnational grief. , Chavan slowly broke the ice that had encased her for eight months. She sobbed as she remembered all the details about her grandmother: the spirited debates they would get into, how she commanded a room despite her small size, how she brought the family together with her love. 

鈥淚t was awful. It was devastating. It felt like losing her all over again,鈥� Chavan says. 

But it was this act of writing and remembrance that allowed her to reconnect to her memories鈥攁nd start to heal.

Systemic Solutions

Ultimately, making space for transnational grief requires the restructuring of how we think about immigration and loss. Currently, it takes years for an undocumented immigrant to become a legal, permanent resident in the U.S., and the few who are able to adjust their immigration status typically receive work authorization before the ability to travel back home, Fullerton Rico says. And so the opportunity of visiting loved ones becomes a waiting game, even as family members age or pass away. 

鈥泪蹿 we pass laws that prioritize a fast path to citizenship, we could avoid having people go through these experiences,鈥� Fullerton Rico says.

Many undocumented immigrants also have inflexible, low-wage jobs, which pressures them to make painful decisions, like watching their loved ones鈥� funeral on a smartphone in between helping customers or preparing meals at a restaurant. 鈥淚nstead of being there in person, they had to sneak away to the bathroom, or hide in a walk-in refrigerator to get glimpses of one of the most significant rituals in somebody鈥檚 life,鈥� Fullerton Rico says. 

Giving time and space for a person to grieve in the form of paid bereavement leave can help. This allows grievers to take time off work without facing the potential consequences of losing a paycheck or their job. Chavan recalls the pressure to continue to work in the midst of her grief because she didn鈥檛 have the financial flexibility to lose out on paid hourly work, which gradually degraded her mental health. Currently, only five states in the U.S. mandate employers to give bereavement leave, Fullerton Rico says, only two of which require the leave to be paid.

Most importantly, it鈥檚 crucial to 鈥渓et people know that they鈥檙e not alone in this pain,鈥� Fullerton Rico says. She urges more immigrant-serving organizations to recognize this reality and help immigrants get access to counseling, other mental health resources, or religious rituals so they鈥檙e less at risk of conditions like clinical depression. She shares the example of a Catholic priest she interviewed in New York City, who has helped perform memorial Masses for transnational mourners since the 1990s. Today, these funeral ceremonies are held and streamed through Facebook Live, YouTube, or Zoom, helping families feel some sense of togetherness.

Experts agree that forming this social support is a key factor in the grieving process. 鈥淕rief is something of a social experience,鈥� Bayatrizi says. 鈥淚t鈥檚 an emotional experience that鈥檚 shaped through our social interactions.鈥�

Chavan says that the only reason she finally felt ready to face the emotions was because her partner and her in-laws were supportive, giving her a small but strong community in an isolating time. After writing about the experience, she also started having more conversations with family and friends who had read the article, about the struggle of grieving from afar and how they coped. 

鈥淚t meant that I had this community, this global community that I could reach out to essentially,鈥� she says. 鈥淟earning that you are not alone in something that you have gone through can be very powerful.鈥�

You can read this story in Spanish here.

CORRECTION: This article was updated at 1:55 p.m. PT on May 1, 2024, to clarify Fullerton Rico鈥檚 recommendations for better supporting immigrants. Read our corrections policy here.

After years of isolation, Eagen joined a growing movement to make spaces safer by focusing on air purification. Air filters acknowledge the intimacy that comes with sharing air, and the inescapability of our interdependency. Eagen launched an organization called in San Diego in February 2024, drawing inspiration from , a grassroots group that provides free air-purification equipment to local and touring artists in Chicago.

Emily Dupree founded Clean Air Club in early 2023 after her partner got COVID despite wearing a mask at a concert. 鈥淭here had to be a better way for us to navigate the continuing pandemic, where we would be able to enjoy the arts community, but also be safe while doing so,鈥� she says. 

Thanks to the blueprint that Dupree established, the movement has grown to across the United States, four in Canada, and one in Australia, with a handful more preparing to launch. These groups provide essential mitigation resources and community building in a political climate where COVID-19 remains an ongoing public health threat without adequate institutional or social support. 

Numerous studies have shown that high-efficiency particulate air (HEPA) filters, as well as ultraviolet radiation (far-UVC light) lamps, can reduce the transmission of COVID-19. Yet most venues have not upgraded their air ventilation systems to meet the of five air changes per hour鈥攖he rate at which a space鈥檚 entire volume of air is completely replaced. And that is only the minimum. 

鈥淐lean Air Club exists as a DIY stopgap measure in the midst of ongoing institutional failure,鈥� Dupree says. 鈥淲hat we鈥檝e seen is a widespread suppression of the realities of how COVID can harm us so that capital and the interests of private businesses can continue unimpeded.鈥�

When Katie Drackert developed long COVID, they say 鈥渋t hurt鈥� to be left out of performance spaces they had participated in for nearly 10 years. Witnessing the ongoing public health failures motivated them to found in Austin, Texas, and study communications. 鈥淲hether we want to or not, we鈥檝e all agreed to be public health communicators鈥攁nd in such a grassroots way, where we鈥檙e fighting such an intense media machine and social stigma.鈥�

Before fundraising for air purifiers in San Diego, Eagen built a social media following by posting memes about the connections between COVID, disability justice, and decolonization. As an Indigenous Californian of the Acj谩chemem Nation, an Irish American, and a descendant of the San Juan Capistrano Mission Indians, their ancestors have a long history of being inflicted with鈥攁nd resisting鈥攄isease, from smallpox and tuberculosis to HIV and AIDS. The resulting loss of life, connection, and language (and the role the government played in each) formed the foundation of Eagen鈥檚 worldview. So while they have been harassed for wearing a mask, Eagen sees their work as pivotal for public health and social justice. 

鈥淚solation is not fun,鈥� they say. 鈥淲e can鈥檛 have a movement without joy.鈥� Without play and recreation, 鈥渨e can鈥檛 feed our soul and our spirit, to have energy and to have integrity for the fight.鈥� 

This grassroots effort to purify air in social spaces is clearly meeting an urgent need: Clean Air Club has provided air-purification equipment at more than 600 Chicago and Midwest events, more than 30 national tours, and seven EU/U.K. tours. The group also supports eight official artist partners who commit to having air purifiers at most of their shows, and hundreds of local artists who want to make shows safer. 

In January 2024, Clean Air Club also launched the platform for COVID-cautious artists of all disciplines to find each other. Within a month, 450 artists had signed up around the world.

Clean Air Club prioritizes events that require and provide masks, and in many cities, organizations partner with a to distribute masks. 

鈥淰enues worry that it鈥檚 going to drive away their customers or it鈥檚 going to interfere in some way with their customers鈥� enjoyment of the evening,鈥� Dupree says of mandatory-masking events. 鈥淏ut in our experience, all of the Clean Air Club mask-required events sell out. They are packed with people who are happily masked and happy to participate in a form of care of one another.鈥�

Many of these groups consider the clean air movement as harm reduction: People are going to gather anyway, and any level of mitigation helps reduce the chain of transmission. 

It鈥檚 no coincidence that this grassroots movement is being led by artists鈥攎any of them queer. 

鈥淗istorically, queer nightlife has been such a safe space for when the rest of the world isn鈥檛 accepting of us,鈥� Drackert says. 鈥淒isabled queer people should be able to partake in celebration and pure joy as well.鈥�

While most groups focus on providing cleaner air for music, arts, and leftist organizing spaces, some have a broader focus. Thanks to a crowdfunding campaign and material donations, Fan Favorite has provided some combination of rapid tests, masks, and air filtration at events including a Palestine solidarity event, a punk show, a fast-food workers organizing panel, an erotic art night, a social drawing night, and an open mic. They have also distributed masks and tests to workers crossing the Mexico鈥揢.S. border.

founder Ashley Hayward is a burlesque performer and her partner is a comedian, so she hopes to make those shows safer. in Los Angeles focuses on air purification for the drag scene, which relies on lip-synching, making mask-wearing impractical. in Charlottesville, Virginia, has installed permanent air filters in three local nonprofits, and makes filters available for any community event. Even car dealerships have requested the purifiers; the group might start renting them to businesses to help subsidize the cost. 

Groups like INHALE Nashville and Clear the Air ATX also provide lists of local COVID-safer businesses to help incentivize these practices. 

Rob Loll, founder of in Jamestown, New York, aims to provide air purifiers as well as masks, tests, and COVID information to his community. He鈥檚 provided one permanent air filter to a yoga studio, and provided air filters for a Christmas choir concert. A small business owner himself, he is trying to help other business owners realize that cleaner air directly supports the local economy. 

鈥淭his whole idea that we鈥檙e just going to keep working until we鈥檙e sick, and then disrupt everything,鈥� is unrealistic, Loll says. 鈥淓ven from a business, capitalist sense, I don鈥檛 understand how this is supposed to play out for them.鈥�

Accepting that the pandemic isn鈥檛 over means acknowledging the need for long-term infrastructural change and updated air-filtration standards. Several organizers compared the clean air movement with the structural overhaul necessary to purify water to eliminate cholera. 鈥淚 really hope that we鈥檙e just the very early adopters of something that makes a lot of sense to do on a broad scale,鈥� says Jennifer Bowser of in Richmond, Virginia. Similarly, during a January 2024 Senate hearing on long COVID, epidemiologist pushed for updated air filtration to fight the virus, comparing it to how many building codes now require earthquake-proofing.听

鈥淚 have to remind myself when I get overwhelmed, I鈥檓 doing the job of the state,鈥� Drackert says. 鈥淏ut I will do it, and I鈥檒l continue to do it, because I feel really passionate about it.鈥� 

Making spaces safer for disabled and immunocompromised people helps everyone鈥攅specially considering each COVID infection increases a person鈥檚 risk of becoming disabled and immunocompromised. Cleaner air also mitigates allergies, wildfire smoke, and industrial pollution; it also lowers the risk of other airborne diseases like influenza and RSV. And making spaces safer means more people can participate in crucial organizing efforts. 

This grassroots movement for clean air is poised to grow鈥攁nd quickly. In early February, Dupree hosted a call with 14 clean air organizations to share strategies and build solidarity, and the number of groups has almost doubled since then. 

鈥淎ll of the planet鈥檚 health is connected,鈥� Eagen says. 鈥淣ot only has it been true eternally, but on this global scale with so much air travel, the people who are breathing on me here probably breathed on someone in Chicago or got breathed on by somebody from Chicago. Our clean air in each of our cities impacts all of us.鈥� 

CORRECTION: This article was updated at 9:38a.m. PT on May 24, 2024, to correct the name of the organization Clean Air Cville. Read our corrections policy here.

“I started fighting, people trying to kill me in prison,” says Rodriguez, who was incarcerated in New York state prisons for 27 years. “I get stabbed, I get cut up. I start cutting people. But I don’t like violence. I had to fight for my life.”

In 2007, he started going to church again, began playing music and rediscovered both his passion and spirituality. He also began attending every prison program he could, including , designed to bring healing and structure to men currently and formerly incarcerated.

“That’s when I met brother Zach, brother for life, the beautiful angel, the beautiful people,” Rodriguez says. “Thank God for having these people in the world.”

 In 2017, Zachariah Presutti, a Jesuit of the northeast province of the Society of Jesus, officially launched Thrive, whose volunteers provide support to men incarcerated in six New York jails and prisons and help them find stable housing, education, and employment once they leave. While those are often considered the pillars of rehabilitation and recidivism reduction, Thrive also adds another focus: healing.

“Really what we’re dealing with is trauma,” says Presutti, who is also a psychotherapist. “The … trauma of being a victim of abuse, neglect, poverty, sociological constructions growing up. The trauma of being incarcerated, the trauma of inflicting pain and hurt on other people. Those have real psychological effects.”

Thrive provides spiritual retreats at the correctional facilities it serves and estimates about 700 men have benefited from them. The retreats offer a space for vulnerability and reflection, something nearly impossible to find on the inside. Thrive has also helped more than two dozen of them transition after release. In addition to seeing virtually no recidivism, Thrive has helped them make peace with their pasts and reconnect with family. Rodriguez, for example, now has a stable job and housing, while also sharing what he’s gained from his experience with others.

“We’re kind of witnesses of miracles,” Presutti says.

Sometime this summer, Thrive will open , a residential center in the Bronx for 24 formerly incarcerated men, intended to address more directly the stress and uncertainty that can accompany those returning from prison.

The organization addresses the trauma of the prison experience using what it calls “Ignatian spirituality.” In the 1500s, Saint Ignatius of Loyola founded the Society of Jesus, a religious order of the Catholic Church. Recovering after a cannonball shattered his leg, Ignatius read the gospels and grew to believe that closeness to God could be achieved by self-reflection, meditation, and service to others—practices Thrive sees as essential to helping men survive in prison and after returning home.

“We’re not trying to fix people or save people,” says Joe Van Brussel, the group’s chief operating officer. “We’re trying to give people tools and a lens to understand their stories.”

Those stories are frequently troubling ones, reflecting larger societal problems. Many participants have dealt with substance abuse or mental health issues and, according to Presutti, most have themselves been victimized in some way.

“I think prison is how we handle all our sociological questions,” Presutti says. “We have a hard time dealing with poverty, so we lock it away. We have a hard time dealing with [different races] so we lock them away. We have a hard time dealing with mental health. Well, we don’t have services for them, so lock them away.”

There’s evidence to suggest he’s right. As many as half of all inmates in American jails and prisons suffer from some sort of psychiatric disorder, according to new book  The Bureau of Justice Statistics that 37 percent of prisoners and 44 percent of people in jail had been diagnosed at some point with a mental health disorder. Jails in New York, Los Angeles, and Chicago are now the three largest institutions providing psychiatric care in the U.S.

Van Brussel said the conditions of prison—chaotic, violent, and uncertain—further erode the psyche. The retreats give the men a chance to be vulnerable, uncommon inside prisons.

“They never get a chance to breathe or just talk in a safe environment,” he says. “People have told us, ‘It’s been months since someone listened or wanted to hear my story.’”

Tracy Tynan, who volunteers at Thrive retreats, says they begin with a guided meditation that encompasses anything from envisioning relaxing on a beach to a “conversation with God.” Then, participants share positive recent events in their lives, such as phone calls from loved ones or progress with an appeal. But they also talk about the hardships of prison life—fights, fear, and lockdowns. Retreats might include art or music.

The centerpiece of the retreats is the lectio divina—a reading from the Gospels coupled with “imaginative prayer” and introspection based on how the reading resonates individually. All this combines to create the rare space where incarcerated people can close their eyes, relax safely, and look deeply within themselves.

“It really, really helps them,” Tynan says. “It’s unusual to close your eyes in prison.”

Santiago Ramirez served 36 years in prisons throughout New York state for committing a deadly robbery while in the throes of substance abuse. He remembers those retreats as his only opportunity to trust inside.

“Sometimes in prison, you can develop friendships and relationships,” Ramirez says, “but you’re not really comfortable disclosing everything about yourself. Then you worry: Is that person going to betray your trust? But Thrive is so welcoming, so encouraging, so supportive, so loving.”

Presutti says because love is such a rare commodity among formerly and currently incarcerated men, extending it is an important part of Thrive’s mission. “They need to experience love, to be loved, and I think that’s when healing begins,” Presutti says. “Healing begins when we realize just how much we’re loved. A lot of people have bad experiences of being loved. Someone told them they were loved one time and abused them. Someone told them they loved them one time and kicked them out onto the street or gave them a needle.”

Outside prison, Thrive provides emotional support and a sense of community some participants have never experienced—employing everything from monthly group dinners to counseling and transportation.

Convicted as an accomplice to a murder he said he witnessed but wasn’t involved in, Rodriguez wanted to live in Buffalo after his release where another organization was offering re-entry help. As a condition of his release, however, he had to return to New York City, the site of his arrest. Presutti and Thrive’s volunteers stepped in, picking him up from the prison, helped him get clothes, and gave him a place to stay.

“They told me, ‘You gotta follow the rules. Step by step, little by little, poquito, suavacito, you’re gonna be OK,’” recalls Rodriguez. “’But you got to take it easy because you been locked up for too many years, and life is not like it used to be when you were there.’”

At Ignacio House, which Thrive hopes to open by the end of summer, men with whom it connected on the inside will be given priority in housing. They will receive workforce training and gain access to scholarships from Manhattan College. Thrive wants to use open space inside the house for Alcoholics Anonymous meetings and local events, all designed to create a foundation of support for these men as they work to build their lives on the outside and develop a sense of community.

“It’s not building agencies,” says Presutti, who openly resists joining what he calls the nonprofit industrial complex. “It’s about being there as a community. Community brings connection and intimacy ultimately, which leads to the experience of love.”

Volunteers and participants hope that Thrive’s approach will take hold around the country, presenting it as an antidote to both the causes and effects of mass incarceration.

“I think it’s a way that we’ve been dealing with the issues we just don’t know how to deal with,” Presutti says. “If we can just put [incarcerated people] out on an island, nobody will know how to get to them and hopefully people will forget about them. The grace in the whole thing is if people haven’t forgotten about them.”

But in the words of Mark Charles and Soong-Chan Rah in their 2019 book 鈥淲hite America could not perpetrate five hundred years of dehumanizing injustice without traumatizing itself.鈥� 

On the night of December 31, 2015, I learned about my ancestors鈥� long-standing history on this land. The next day, January 1, 2016, the process of unraveling our family鈥檚 amnesia began. As I began sharing my ancestral discoveries with my white friends and family, I encountered blank stares and shrugging shoulders, accompanied by a quick change of subject to something more timely, relevant, or entertaining. I was often told reassuringly, 鈥淲ell, that was a long time ago. Everyone thought differently then. You shouldn鈥檛 feel guilty about that.鈥� Far from being placated, I wanted to scream. People literally could not hear what I was saying. I felt isolated in a process that was rewiring my core identity.

What I had discovered in my own family history posed a threat to the person I thought I was, and to the person I was taught to be. Looking back now, it felt like I was receiving an ancestral push toward truth and healing after many generations of silence. The process went far beyond a tidy phrase like 鈥渨hite guilt.鈥� Over time, I began distinguishing guilt from accountability. Staying stuck in guilt is not helpful. Moving into accountability catalyzes necessary change. I was rapidly becoming someone I did not recognize. 

What was now glaringly obvious and 鈥渋n my face鈥� all the time was being actively ignored by well-meaning white people all around me. Overwhelmingly, I felt pressured to calm down, behave, and just stop talking about it. Why? Talking about the shadows of colonialism and enslavement contradicts the heroic American mythology that we learned as children. Within the Euro-American diaspora, our capacity to deal with our ancestral legacies is compromised. We are part of a culture that is more invested in maintaining a narrative of innocence and denial than in embracing truth and healing.

I imagine this work to confront our collective amnesia will continue for the rest of my life. I hope it will persist into future generations as well. Over the years, I came to see our amnesia as .

When our European ancestors carried to Turtle Island their diseases, poverty, disrupted communities and families, severed cultures, and violence, it did not expunge their own historical trauma. Establishing dominance over the unique civilizations that were already thriving on this continent did not make us whole again. Kidnapping African leaders, healers, holy people, Elders, mothers, fathers, and children to build us a wealth-accumulating economy did not bring us peace. 

In her book , Euro-descended Elder Louise Dunlap shares how she perceives the suffering of our settler ancestors: 鈥�…a nightmarish, button-your-lips suffering that warped the mind, closing it to compassion for other humans and encouraging brutality against perceived enemies and the Earth itself. These ancestors struggled with a punishing legacy that still afflicts us.鈥�

Our ancestors鈥� punishing legacy went into the underbelly of our society. Today, it hides out behind a polite mask of denial. Almost everything in Eurocentric culture conspires to keep us asleep. Amnesia is the path of least resistance. 

I am grateful that the ancestors have shown me the unpopular truth: Unleashing their tears and reviving their memory might just be the messy, raw, healing balm for the wounds our people sustained and perpetrated so long ago. If we muster the courage to traverse these shadows, who might we become on the other side of all that pain? Who are we underneath the denial, amnesia, grief, guilt, and shame? 

Let鈥檚 find out.

This essay is excerpted with permission from by Hilary Giovale (Green Writers Press, 2024).

When I got the email from adrienne maree brown inviting me to be part of the chorus sharing this column on accountability, I welcomed the chance to consider a question that had dogged me when I was a lawyer challenging conditions of confinement in prisons and jails: How do you use the justice system to hold accountable a justice system that understands only punishment? 

The question, I realized, is a 驳辞苍驳鈥檃苍 (in Zen, a koan): in Chan Buddhism, a paradoxical riddle that first disorients you and then, if you are diligent in practice, leads you into enlightenment. 鈥淲hat is the sound of one hand clapping?鈥� is a 驳辞苍驳鈥檃苍, as is the question, 鈥淲hen you do nothing, what can you do?鈥� 

I started lawyering deep in the 鈥渢ough on crime鈥� era that started in the early 鈥�70s with President Nixon鈥檚 war on drugs. A cascade of punitive laws had produced the world鈥檚 highest incarceration rate, militarized police forces, and a massive archipelago of prisons, jails, and detention centers.

At the Southern Center for Human Rights, our lawsuits were based on the United States Constitution鈥檚 Eighth Amendment, which prohibits 鈥渃ruel and unusual punishment.鈥� In one case, filed in 2003 on behalf of Alabama鈥檚 women prisoners, the largest dorm (the prison鈥檚 former factory) was squeezed so tight with bunk beds that the women could pass a deck of cards from one end of the room to the other without having to reach, elbows bent the whole way across. When combined with 90-degree temperatures, the conditions were undeniably cruel and unusual.

The nightmarish conditions inside the prisons were created entirely by the state of Alabama, but there was a frank refusal to admit, much less take responsibility for, wrongdoing. There was no sense of accountability. The only language the Department of Corrections could understand was their own鈥攖he language of punishment. Where accountability acknowledges and takes responsibility for wrongdoing, the logic of punishment is to inflict suffering commensurate with the suffering caused.

Prison officials understood even the most meager relief 鈥攊n that dorm, a pair of swamp coolers pushed the hot air around鈥攁s a penalty, a chastisement that had to be submitted to, but with maximum reluctance. Practiced in punishment, this was all they understood.

Then in 2013, Black Lives Matter took off. After decades of police killing Black people with impunity, the killings of Eric Garner in Staten Island, New York; Michael Brown in Ferguson, Missouri; Akai Gurley in Brooklyn, New York; Tamir Rice in Cleveland; Walter Scott in North Charleston, South Carolina; Freddie Grey in Baltimore; Philando Castile in St. Paul, Minnesota; and Breonna Taylor in Louisville, Kentucky, sparked large-scale protests: The DOJ opened investigations into multiple police departments. With breathtaking speed, the need to end mass incarceration went from being a far-left fantasy to a centrist talking point.

A regressive era was ending, it seemed, and a progressive one beginning. But very quickly, it became obvious something was amiss. The reforms that were actually implemented鈥攂ody cameras, surveillance cameras, and more training鈥攄id nothing more than enlarge the budgets of police departments. Even as fewer people were locked behind bars, the conditions in prisons and jails got worse. And the judiciary鈥攕tate and federal alike鈥攕hifted right, ever-more reluctant to protect any rights other than the right to carry guns.

Dr. Martin Luther King Jr.鈥檚 oft-repeated phrase鈥攖hat the arc of the moral universe is long, but bends toward justice鈥攕eemed鈥� wrong. 

Perhaps there is no moral universe. 

Perhaps there is a moral universe, but the arc is so long that we, like Achilles in , will never arrive at our destination, justice.

Perhaps there is a moral universe, and it is indeed arcing toward justice, but we have fallen off the arc. 

I puzzled over every possibility, until finally I arrived at the last word in the phrase: 鈥渏ustice.鈥�

In creating this nation, the fugitive slave clause in the U.S. Constitution was a concession to enslavers who insisted runaways be 鈥渄elivered up like criminals,鈥� as fugitives from justice. This is the only substantive meaning of 鈥渏ustice鈥� written into the U.S. Constitution. The practical meaning of 鈥渏ustice鈥� was in enforcement, where local justices of the peace were installed to pass quick judgment on disturbances of the 鈥攖hat is, to put down rebellions and resistance by those enslaved.

With my faith in justice wavering, I left the practice of law. It was as if the north star had blinked out and disappeared from the night sky. During this disorienting time, I found another 驳辞苍驳鈥檃苍 to be helpful. This was Detroit organizer Grace Lee Boggs鈥� opening question at every meeting: 鈥淲hat time is it on the clock of the world?鈥� 

Time, in Buddhist and many Indigenous cosmologies, is spiralic. In this spiral, the long arc of the moral universe is but one small segment of a much larger, much longer spiral. The arc of the moral universe is a part of the larger spiral of the moral universe. Can you see it? We are at the turning of the spiral, at a time of revolution. 

As we make this turn on the spiral, the constituent arc now runs in a different direction. Where the present arc bends toward justice, toward what does the emerging arc of the moral universe bend?

We can remember that revolution has two meanings. The contemporary meaning of revolution is of a sudden and great change. But revolution also retains its earlier, astronomical meaning, of a celestial body鈥檚 movement in a circle or ellipse. That is, as a return. In this moment, we mean revolution in both these meanings.

The path forward, it seems, is a return to what was鈥攁nd what remains, as an undercurrent鈥攐nce abundantly present on this land: reciprocity, democracy, and collectivism. Abolitionists see the revolutionary possibilities of this moment. It is now possible and necessary, per Ruthie Wilson Gilmore, to . Abolition鈥檚 goal is not a better justice system, but a world free of prisons, police, and justices of the King鈥檚 peace altogether. The work is not to reform, but to dismantle. 

The bend toward such a radically different world is not assured. It will, in fact, be vigorously and violently resisted by the existing system, which will use the criminal justice system, its most powerful weapon, to try and crush attempts to replace it. Case in point: the RICO indictment of #StopCopCity activists cites as evidence of criminal conspiracy.

In this revolutionary moment, then, what to do? Dismantle the existing criminal justice system, certainly, so that the new world being built is not arrested and imprisoned. And then, hands on the plow, we do the work necessary to build鈥� what? With reciprocity, democracy, and collectivism as our new (and old) north star, what are the systems and institutions we want to revive and create?

Here, again, we can turn once more to a 驳辞苍驳鈥檃苍 to guide us.

We can ask: How can every individual be free to choose how to offer their gifts for the benefit of the group and the earth? 

In the spirit of 驳辞苍驳鈥檃苍, we know that we don鈥檛 know. This paradoxical riddle will first disorient us. And from this disoriented place, our commitment is to be diligent in practice鈥攖o be creative, and brave, and try wildly different things, and learn from the many inevitable failures, and try something else, and yet again something else. These are the million experiments Mariame Kaba encourages us to try鈥攅xperiments we can and must undertake with . In this way, we just might fumble our way into building not only a true system of accountability, but a whole new world.

We are in a period of history where it is difficult to speak and sense the truth. In our 24-hour news cycle, the truth is spun and remixed and dramatized and tweeted. It can be confusing to determine what stories are real, what stories actually impact our lives, what is worth our attention, and what, once heard, we are accountable for acting upon. Many of us now find our attention directed by the trends and algorithms of social media. As I write this piece, there is an incredible unfolding, as scientists around the world lock themselves to the doors of their institutions, begging us to attend to the acute climate catastrophe unfolding. But I am watching that storyline be swallowed by celebrity news and other dramas. 

Distraction and redirection have become a field of specialization. There are professionals in every field and political distinction constantly calculating new ways to manipulate us into making decisions that serve their clients, their values, their politics, or their pockets. This focus-grouped messaging doesn鈥檛 come with a label, even though it鈥檚 the GMO of communications. 

There is also so much complexity of perspective in how human life unfolds鈥攖he reality is that there is no single truth. Context is everything. Power dynamics, cultural experiences, class norms, and age can all have a radical impact on what we understand to be the truth.

And then there鈥檚 the emotionality of language. I have been guilty of using hyperbolic language when caught up in a moment of anger or despair, language which oversimplifies or outsizes the truth in ways that can either reduce or oversell the narrative of what is actually happening. 

So how, in these times, do we 鈥渟peak truth to power,鈥� as our civil rights ancestor ? How do we speak honestly about where and how we are right now, and what we actually need to center in our organizing? How do we learn to 鈥渂e impeccable with our words,鈥� as Toltec wisdom through Don Miguel Ruiz advises in his outstanding text ?

I want to offer some of what I am learning鈥攁s a human, as a facilitator and mediator, and as a writer.

Fact-check everything.

Every source of information isn鈥檛 equal, especially in the realm of social media. Before passing information along, consider the source. Do they have expertise in a relevant field? Is the information well-researched? Does it include the voices of organizers actively working on the issue? What about communities directly impacted by the issue? Is the source a journalistic outlet committed to fact-checking? 

Speak as precisely as possible.

Especially when sharing information others really need to hear. I remember a poetry teacher telling me to 鈥渨rite it, now cut it in half. Now cut in half again.鈥� As a verbose writer in love with words, I struggle with precision of communication. But in both intimate and collective moments of accountability and negotiation, I find it helps to take a deep breath before I speak, and think about what precisely needs to be communicated. 

Discern.

Is this the right time for this communication? Is it urgent, or is there time to ask questions and fact-check? If it is urgent鈥攚hy? Who says so? And who benefits from the information being spread? Do you want to benefit them? Could someone be harmed by that information spreading? Do you want to harm or punish them? Are there other perspectives to consider? What are the potential impacts of this communication? Are those impacts you want to be accountable for? 

Speak when we are afraid.

I used to think that if I could not speak without my feelings showing鈥攆or instance, speak without a tremor in my voice when I was afraid, or without tears when I felt sad鈥攖hat I should be quiet, and wait until the emotion passed. But I have been learning that my most powerful words are often accompanied by the release of tears, or the quaking of my gut as fear moves words out of my mouth. When I take the risk of speaking not through or over my emotions, but rather in alignment with, or even from, my emotions, I am speaking my truth. 

Speak truth that allows other truths. Hold strong boundaries against mistruths, lies, assumptions.

Not every perspective is equal, nor does every viewpoint deserve to be equally held or considered. None of us holds a definitive truth, and we need to speak with each other in ways that make room for a multitude of experiences. But we must set a standard of not indulging lies and willful mistruths. For instance, any indulgence of denial of the current climate catastrophe is dangerous for us as a species. We need to be clear and consistent in our standards for truth, and stop uplifting perspectives which cannot survive a fact-check. 

Speak from our own experiences.

We are each responsible for bringing our piece into the great story of our species, which is a long and complex story. Just because something feels true for you doesn鈥檛 mean it resonates for everyone. Relinquish control of the collective narrative鈥攚e are not meant to dictate and control each other. Live into your truth, and allow others to live into theirs. 

Speak as a body.

One thing that is helping me in my unlearning of dishonesty culture and cultivating the muscles for honest, accountable speech is to really listen to my body as I listen to others, and as I communicate. The body is often aware of the gap in integrity, whether it is in another or in us, the space between what鈥檚 being said and the truth. Start to pay more attention to how your body lets you know that what you are hearing or reading might not be true. I feel it in my belly. I have a good friend whose palms get a little sweaty, and another who feels a twinge in her spine. 

Speak what is kind, necessary, and true.

I learned this from Buddhism, and it is one of the simplest and most effective tools for accountable speech that I have ever come across. It only works as a balance. Truth without kindness can veer into cruelty. Truth that is unnecessary can cause harm. Kind speech that is unnecessary or untrue is infantilizing, patronizing, and diminishing the person you speak to. Necessary truth spoken without kindness can land as a blow that produces a defensive response, rather than an opening for connection and action. 

This is just some of what I have learned鈥攁nd I am still learning. Like many of you, I suspect, I am not just navigating our current culture of communication confusion, but also recovering from cultures of politeness, passive-aggressive speech, repressed truths, and the webs of deceit and distrust that are woven into so many of our cultures. 

Commit to using language in ways that shed light. This is a time when we cannot afford to live in the fog of dishonesty. Our future depends on being able to turn and face what is, and to be honest about what we are going to do to survive.

The internet is filled with lists of which 鈥攖he assumption seems to be that, otherwise, we singles would be festering alone in our living rooms, drinking vodka and singing 鈥淎ll By Myself鈥� . I enjoy the genre, but as a feminist I have some qualms.

鈥淚 never liked his movies anyway. They don鈥檛 speak to me, first of all, as a woman, and second of all, as an African-American woman,鈥� she says. 鈥淚 know all the film critics and film students that I have been in contact with say that Woody Allen is a master at doing this and that. But I don鈥檛 align with anything that he does or is. And that鈥檚 how I go about it. If what the person does doesn鈥檛 align with my core values, then I just can鈥檛 do it.鈥�

There are funnier, more romantic movies than Annie Hall, anyway.

3. Opt for rom-coms with fewer or zero problems

I know the classics are, well, classics, but why not watch a movie that takes a healthier approach to romance? 鈥淭here are always movies that are smaller productions, and they might not have the big box-office dollars, but they鈥檙e still well-crafted, well-made movies,鈥� Jones says.

Here鈥檚 a 听of five from Thought Catalog听to get you started: Warm Bodies, She鈥檚 Out of My League, Celeste and Jesse Forever, My Best Friend鈥檚 Wedding, and Kate and Leopold (sarcasm).

So, my fellow feminist rom-comphiles, don鈥檛 be discouraged.

There are still a lot of things people can enjoy about romantic comedies, Jones says. 鈥淲ith as much choice as there is out there, a person doesn鈥檛 have to give up their romantic comedy love altogether.鈥�

This article was edited at 3:35 p.m. on February 12, 2021, to replace broken gif links with functional images. Read our corrections policy here.

What I don鈥檛 like is seeing ableism鈥攖hat is, prejudice against adults and children with disabilities鈥攔olled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade. So many of the stories about the abortion bans that states are enacting describe abortions as necessary for pregnancies in which there has been a diagnosis of a fetal health problem. This suggests that avoidance of future disability for the child is the correct and rational decision. But the issue is more complicated than that. We can discuss abortion rights while also advocating for disability rights by centering bodily autonomy.

The intersection of disability rights and abortion rights is complex, but much of the discourse around the topic has centered on the perspective of parents of potentially disabled babies over the lived experience of disabled people. Ongoing access to safe and legal abortion is a critical issue, but reproductive health equity requires that we look beyond this single issue and toward the need for a system of care that values and supports the lives of children and youth, including those with special health care needs.

The care that pregnant people receive needs to honor their bodily autonomy.

Unborn children are a convenient group of people to advocate for, since they are inherently unable to advocate for themselves. That holds especially true for unborn children diagnosed with a serious disability. With timely prenatal diagnosis, modern medicine can save the lives of children who previously would have died at birth or shortly after. But access to this level of care is still marked by major disparities. Across the board, the states that have moved to impose severe restrictions on abortion access are the same states where children with major health care needs can鈥檛 get the care they require.

I learned that my son would have serious and medically intensive disabilities at a routine 18-week ultrasound. As I learned more about his medical conditions and the interventions that would be required to make sure he could breathe after birth, I had to read between the lines of what my husband and I were being told by our local doctors. The level of care that my son needed to survive was available鈥攊t just wasn鈥檛 available where we lived. My local obstetrician was upfront that she didn鈥檛 perform abortions unless the situation fit into her moral framework (she didn鈥檛 ask about mine). But, at the same time, my doctor could not provide the kind of care my son needed to survive after birth and declined to even refer me to another provider. Her beliefs about justified and unjustified abortions provided her with moral comfort but didn鈥檛 actually provide me with the kind of care that would make it possible for my son to live.

We live in California鈥檚 Central San Joaquin Valley, a region with a persistent lack of access to specialty medical care, including the kind of care that is necessary to support infants with major medical needs. I was on my own to get second opinions based on the limited information we got from our local doctors. I was on my own to figure out how to get to one of the big children鈥檚 hospitals in the Bay Area. I based my decision on whether to continue or terminate the pregnancy based on whether my son was going to have a fighting chance at life鈥攁nd the sad truth of that was that chance depended on our family having the financial ability to uproot everything and travel 200 miles from home for all of his care. We knew that he might be able to live if we could get to a better-equipped hospital, and we knew that he would die if he was born in our hometown.

A nurse at my obstetrician鈥檚 office put her hand on my pregnant belly and prayed out loud that I would find the strength to fight against forces that would tell me to get an abortion. I didn鈥檛 give her permission to do that, and I certainly didn鈥檛 ask her to. Her intervention鈥攚hich made her feel good in the moment鈥攑ermanently damaged my willingness to talk about my health or decision-making process with that office.

In contrast, at the university hospital where my son still receives his specialty care, abortion was presented without judgment as an option alongside a comprehensive plan of what they could do to keep him alive after birth. When I was presented with abortion as part of comprehensive reproductive health, I felt like I was being respected as a person. But earlier, when my hometown medical care team let their bias take the lead, as a patient, I felt trapped.

My son is now 11, but instead of his ventilator being a scary thing in the intensive care unit, it鈥檚 just a normal part of his bedtime routine. He brushes his teeth, puts on his pajamas, and hooks up his ventilator while he reads comic books in bed. At the time I was making decisions about my pregnancy, I had internalized ableism. Because of institutional bias and lack of community living support for disabled adults, I had never seen anyone with disabilities like my son鈥檚 out in the community. I thought about his life as being a linear path from sickness to health. I was wrong about that鈥攃hildren with disabilities grow up into adults with disabilities, and it鈥檚 our job to build a world that works for them.

The care that pregnant people receive needs to honor their bodily autonomy. At the same time, the availability of abortion doesn鈥檛 diminish the lives of children who have special health care needs or of adults with disabilities. California can continue providing safe and legal access to abortion while building a wraparound system of care that values the lives and rights of people with disabilities.

This commentary was produced in partnership with the .

self-portrait as the ocean or Fofie鈥檚 wisdom听

study the tides of
the ocean shored by your skin 
each ripple each wave

know not all water 
is meant to quench dry throats or
to be waded through

know not everything 
that is left in the waters 
is an offering

reminders for my (impatient) selves听

don鈥檛 force what won鈥檛 come
what is for you is either
coming or waiting

closed mouths (and full ones)听don鈥檛 get fed

ask for what you need
ready yourself to receive
as well as release

a lesson learned from June听

i been wrong…and still
wrong ain鈥檛 never been my name
pronounce me correct

pronounce me (w)hol(l)y
won鈥檛 answer to all i鈥檓 called
act accordingly

train your timid tongues
sound out all my syllables
i been a mouthful

you are your own听

because you were both 
the cost and the one who paid
a terrible price

It was a hot summer day in 2007 when I wrapped filming for a documentary about women and children鈥檚 organizing and leadership in a refugee camp in Ghana. As I was saying my goodbyes, a woman approached me and said, 鈥淵ou know, Sis, the same AK-47s in child soldiers鈥� hands in Liberia鈥檚 civil war are in your children鈥檚 hands [in the United States]. You need to do something about that.鈥�

The comment stuck with me, and ultimately shaped the subsequent decades of my life, when I volunteered to teach sociology courses inside prisons in Washington state, then spent 12 years filming inside those same prisons鈥攁nd in the neighborhoods, homes, and communities from which those incarcerated people came. I became deeply concerned with how the culture of punishment impacts the lives of children.

Our 2020 documentary, , is a love letter to those children. 

Our film invites viewers to take an in-depth look at incarceration in order to better understand the processes that led a person to prison, their resilience, and prisoners鈥� ultimate role as models for all of us. Set in Tacoma, Washington, the film bears witness to an 鈥渆verytown鈥� urban neighborhood鈥檚 fight to stay alive in the face of racial profiling by police, gangs, drugs, and gun violence.

The film brings to life statistics of racial and gender disparity in , education, employment, and , and shows viewers the through stories from community members impacted by it. Viewers get a window into the ways that incarcerated people are organizing to bring education, healing, and compassion to one another and those who have been harmed鈥攂oth in and outside prison walls. 

In 1993, Washington state voters were ostensibly designed to discourage 鈥渞epeat offenders鈥� by implementing increasingly severe sentences for each conviction, including for specific offenses. Washington is also one of (including for life sentences) and is among the few states that . It was also in poor and Black communities. 

This combination of policies, influenced by the frenzy of the war on drugs and perceptions of escalating crime and gang activity in the fear-mongering political climate of the late 1980s and early 1990s, led Tacoma voters to sacrifice their most vulnerable children, discarded as .鈥� This culture of punishment, combined with the city鈥檚 lack of social services, disinvestments in early education, and increasing inequality in housing and employment, stained the Tacoma landscape and destined these children to live their lives out behind bars.

Yet even when thrown into prison for punitive removal from society, these children, now adults, could not be silenced. Together they built a prisoners鈥� community of healing, anchored in restorative and transformative justice that extended beyond prison walls. 

The film chronicles the impact of two prisoner-led groups that have been critical to growing efforts to dismantle the culture of oppression that permeates Tacoma and countless other cities nationwide.

The Black Prisoners鈥� Caucus (BPC), established in Washington state prisons in 1972, and BPC TEACH (Taking Education and Creating History) in 2013, offer blueprints for repair within the communities they once harmed. Two members of TEACH describe the organization as 鈥渁 communal learning environment that鈥檚 not physical but mental, spiritual, and emotional.鈥� The experiences of BPC and BPC TEACH members illuminate the essential roles of activism, compassion, love, and self-forgiveness in personal and community transformation.

The culture of punishment that groups like BPC are working to dismantle is unfortunately a pervasive element of our shared reality in America today. Especially in these times of and fear of difference, who better to show us the triumph of the human spirit than those caught behind bars for life?

The film introduces us to Kimonti Carter, who grew up in Tacoma. He was convicted in 1998 at age 18 of aggravated murder connected to a drive-by shooting. He was sentenced to 777 years, without the possibility of parole. Carter became not only our protagonist but the spine of our film. His story embodies the triumph of the human spirit鈥攅ven when faced with social forces that attempt to define the margins as a place of deprivation, never of possibility.

In 2021, the that mandatory minimum sentences are unconstitutional for 18-, 19-, and 20-year-olds, pointing to 鈥渁 rethinking of the culpability and punishment for young people, as science has revealed more about their developing brains,鈥� according to . This ruling opened the door for Carter鈥檚 July 2022 resentencing, when a judge determined that Carter, having served 25 years in prison, must be released. 

He now serves as a community outreach specialist with the Washington State Office of Public Defense and continues to work with BPC Community Group and other formerly incarcerated peers and youth in schools, education, health care, prisons, and juvenile facilities. Carter鈥檚 goals are reflected in the film, as we see him鈥攖hen and now鈥攄eeply committed to policy change, youth activism, and support for prisoner-initiated programs.

Carter鈥檚 leadership was essential to the 2013 creation of BPC鈥檚 TEACH program, where incarcerated people teach each other ways that they can create history. TEACH brings together incarcerated people across race, ethnicity, and gang lines, and provides them tools to question oppression, and the violent behavior that oppression perpetuates among and between people. 

While filming, I was able to bear witness to a TEACH classroom where a prisoner wearing swastika tattoos spoke with a Black man and a man from Central America about the need for respect; the men questioned their own ideologies and practices, and how they each face similar oppression, despite their differences. We travel this journey with them through candid conversations of scenes fired in a kiln of cinema verit茅, and cinematically rendered through Krump dancing and masquerade as we bear witness to the nuances of reflective voice, trauma, contemplative silence, fear, and unbinding love. 

Our humanity is nudged鈥攁nd at times ambushed鈥攚hile watching the film, because the men and women who seem to have an answer to our societal problems have been convicted of violent crimes. The film does not question their innocence or guilt, but rather our own preconceptions about humanity and the tensions between compassion, punishment, crime, and justice. Distinct Black women鈥檚 voices provide the tenderness, rhythm, and urgency of this compelling story.

Since I Been Down is dedicated to broadening conversations across significant differences to inspire all of us to become visionary, liberatory thinkers. Our film bears witness to the triumph of the human spirit, allowing us to take a long look at our humanity. As Carter reminds us, 鈥淲e can never be someone different鈥攂ut we can be a better version of who we are.鈥�

To request a screening of Since I Been Down, reach out to the filmmaker at info@sinceibeendown.com.

What she was looking for wasn鈥檛 an accountability process for her abusive ex-boyfriend, however, but a means of addressing the trust broken by her friends who didn鈥檛 believe that the abuse was real.

Space for Change is a collaborative program that aims to hold community members accountable for domestic violence, provide education to prevent future violence, and offer healing circles that bring the survivor together with loved ones who were not supportive when the survivor needed them. It was this last option that Trixie needed.

Trixie鈥檚 case is not a rare phenomenon. Because social isolation is such a common side effect of domestic violence, and because loneliness is one of the most cited reasons why people end up returning to unsafe relationships, we advocates saw a great need for ways to heal the harm that can ripple out from these situations. Often, friends and family who don鈥檛 believe survivors, who side with the abuser, or who walk away when they are needed most can lead the survivor to feel like they do not have the emotional or logistical support to leave the relationship.

Several of Trixie鈥檚 friends didn鈥檛 believe her when she first told them about the abuse in the relationship. She was 鈥渏ust overreacting,鈥� they said. Her boyfriend was 鈥渟uch a great guy.鈥� 鈥淗ow could he be responsible for the things she claimed he was doing?鈥� they asked.

Now that she was out of the relationship鈥攁nd without any support from those friends鈥攕he wanted to know if there could be a way to salvage those friendships, or if she should give them up as a casualty to the abuse so that she could move on.

How to Set Up a Healing Circle

Our Space for Change program is a collaboration between our domestic violence organization and the Conflict Resolution Center of Santa Cruz County, another local nonprofit. Using restorative justice approaches to domestic violence is relatively new for social service nonprofits, so we鈥檝e found that having our domestic violence advocates work alongside experienced mediators in general restorative justice programs, neighborhood courts, and juvenile re-entry programs is an effective partnership. Each organization is able to fill in the gaps of the other鈥檚 knowledge and skill sets.

Space for Change offers three avenues for restorative justice that participants can choose from: a community accountability process for the person who caused domestic violence, which is common in many restorative justice programs; community education, which aims to teach allies and loved ones of survivors about the dynamics of domestic violence so that they can be safer, more effective support people for their survivor; and healing circles.

When setting up a healing circle like Trixie鈥檚, there鈥檚 a lot of initial work from the service providers long before any meetings take place. Either a mediator or an advocate meets individually with the people involved to see where that person stands in regard to the situation at hand. Does everyone have the same understanding of what occurred? The timeline of events? The material facts of the case, setting aside personal emotions and interpretations about those events? A Walnut Avenue advocate might also be present at some or all of the meetings to address domestic-violence-specific concerns, such as correcting a misunderstanding about coercive control or offering peer emotional support for a moment of processing.

The purpose of so much work prior to actual group conversations is to gauge each person鈥檚 willingness to participate, their openness to having their perspective challenged, and whether their goal for a facilitated conversation (or series of conversations) is something both realistic and within our scope of service. Otherwise, we run the risk of inviting people with conflicting needs and agendas into a space where judgment, defensiveness, victim blaming, and re-traumatization are high possibilities.

A Path Forward

Trixie鈥檚 case is still ongoing. Unfortunately, some of her friends have chosen to side with her ex-boyfriend, and although it鈥檚 been painful for Trixie, she鈥檚 also expressed relief that at least she doesn鈥檛 have to wonder about those friendships anymore. She can grieve them and, eventually, move on. Other friendships appear to be salvageable, with time and careful communication. Although she has not found everything she鈥檇 hoped for, Trixie has expressed gratitude for the healing circle and how it has helped her clarify what she needs to receive from her loved ones to move forward and identify which people she wants involved in that healing process.

In crisis intervention, our focus is on the survivor and the person causing harm, and rightfully so. But this view doesn鈥檛 include the ways in which domestic violence ripples out into those two people鈥檚 family, friends, and community鈥攁nd this is where restorative justice could be one of the most useful tools we have for addressing the casualties of other relationships, mitigating isolation of the survivor and encouraging accountability for the person who caused harm.

I鈥檝e found restorative justice to be one of the most challenging approaches to domestic violence, but also the most rewarding when the people involved are participating with genuine desire to find a path forward. It allows personal autonomy and a tailored approach to justice that historically has not been a common experience with the legal system. This allows survivors, families, and communities to strengthen their own relationships together. I鈥檝e been honored to be a part of that process with survivors like Trixie.

This story was by , and is reprinted here with permission.

This is a brief analysis of letting go. I hope I didn鈥檛 just lose you after reading that, brave one. 

Goodbyes are not easy, and many of us never had a proper model for how to say goodbye, how to let go of people and things with grace, care, and intention. This lack of know-how often manifests as hoarding, ghosting, and the very human fear of change and confrontation.

As a collective, how do we say goodbye to the structures and traditions that no longer serve, protect, and preserve us? 

An example: Thanksgiving. Although there is a wealth of online material proposing the possibility of 鈥渄ecolonizing鈥� this celebration of genocide, is it possible to decolonize a holiday that is inherently colonial in its essence? Can we truly create anew from its anti-Indigenous foundations? Is it enough to have conversations around its problematic roots with family or community members?

It must be said that the pillars of settler law are perpetuated when we do nothing beyond reflection and discourse instead of Reflection and discourse are essential to praxis, but the absence of praxis is essential to settler colonialism.

The work of decolonization is not to be romanticized, as real change is core to it.

Letting go of Thanksgiving might be easy for me to consider, as I did not grow up in a country that celebrated it. My attachments to it are loose, and it does not devastate me to scratch this holiday from my calendar. However, I recognize that even with my short-lived experience with Thanksgiving, I am not in denial about the lovely memories shared with friends and family when we observed it. Some of these experiences were memorable and beautiful. Other times, they were uncomfortable because of the tense political conversations at the dinner table. 

All the same, I can understand why it would be difficult to let this tradition go. But letting it go does not invalidate the warmth I enjoyed over a shared feast with friends and family. My choice to divest from this holiday does not threaten the genuine happiness I felt in the presence of my community every last weekend of November. And I am also resolved and determined to no longer bring further harm to Indigenous communities and the loved ones in my life who belong to them by continuing this tradition. 

As someone with Indigenous ancestry from a different colony, I can only imagine how it would feel offensive and disheartening to watch numerous families and communities around me make elaborate festivities that symbolize the conquest over my people, my ancestors, and the land. With that awareness, I choose to no longer invest in the gatherings that trigger past and present colonial trauma. I choose to no longer participate in this celebration of genocide and overconsumption, and instead seek alternatives to be in solidarity with Native communities toward the reconstitution of Indigenous consciousness and returning their ancestral land.

We are ready for this change, more than we were before.

The journey toward a new and liberated world will require endings such as this. It might hurt, and it will be disorienting. 

In , Frantz Fanon critiques: 鈥淒ecolonization, which sets out to change the order of the world, is, obviously, a program of complete disorder. But it cannot come as a result of magical practices, nor of a natural shock, nor of a friendly understanding. Decolonization, as we know, is a historical process: that is to say it cannot be understood, it cannot become intelligible nor clear to itself except in the exact measure that we can discern the movements which give it historical form and content.鈥� 

The work of decolonization is not to be romanticized, as real change is core to it. Change can be daunting and disorderly, especially when we are heading toward realities unknown to us. With the state of our world, liberation will feel unfamiliar, because oppression has always been pervasively familiar. says, 鈥淲hite supremacy is not a shark; it is the water.鈥�

It鈥檚 not only time to envision and create anti-colonial futures and alternatives together, but it鈥檚 also time to expand our mental and emotional capacity to default to these creative alternatives instead of deferring to the status quo鈥攁nd, in this case, to divest from the status quo around what it means to give thanks as a community.

Is the death and rebirth of our expressions of gratitude in motion? Would you say yes to participating in its recreation, one that is possibly founded in giving reparations, raising awareness of Indigenous demands, and organizing in solidarity with Native communities toward ?

If we are to aim for a new and possible world, it will entail ending the delusions and foundations that are antithetical to gratitude and belonging. We are ready for this change, more than we were before.

Our writings are birthed out of the interweaving conversations we share with others. This piece would not be possible if not for the times shared with kindred friends, especially those who have Indigenous and African ancestry. For this piece, I thank James Secretario and Travis Voboril for exchanging ideas with me.

Delfina Roybal shares alternatives to Thanksgiving in .

Like many policy efforts when it comes to youth, this misses the mark and ignores the real crises afflicting teenagers.

The real crises the most troubled teens face involve their 辫补谤别苍迟蝉鈥� rising addiction, suicidal and addictive behaviors, and violent and emotional abuses. Bans on teens鈥� online access are dangerous, since indicate the most distressed fraction of youths use social media to connect to others and find 鈥減eople who can support them during tough times.鈥�

Unfortunately, the Centers for Disease Control and Prevention鈥檚 (CDC) just-released 鈥�,鈥� generating alarmist headlines like 鈥�,鈥� invites exactly the kind of distractions and scapegoating being pushed with ill-advised bans.

The latest report finds a bizarre contradiction. On one hand, teens themselves are generally improving their behaviors with respect to drugs and alcohol, school violence, and sexual responsibility鈥攆indings similar to those of the FBI, CDC, and Census Bureau that actual crime, unwanted pregnancies, and school dropouts by youths are plummeting. Only 15% to 16% report bullying (even under a very broad definition) at school or online鈥攖he two venues with which commentators and leaders seem obsessed.

Decades of research show that troubled teenagers are the product of abusive, troubled adult families.

On the other hand, the new CDC report finds dangers and violence toward teens inflicted by others is increasing dramatically. For example, 18% of girls report being sexually victimized. But, as in other areas of endangerment, the CDC fails to explore who is perpetrating the violence. If, as the , rape and sexual assault by teens have plunged to all-time lows, who is sexually victimizing young women?

The latest CDC report similarly finds LGBTQ+ youth, and youth who have otherwise had same-sex sexual contact, reporting alarming levels of forced sex and violence. It then fails again to ask about the perpetrators. Are they partners? Peers? Adults? ? Instead, the CDC seems to invite speculation as to who to blame.

The previous survey, released by the CDC in March 2022, , although it did pose more questions than the most recent report. It found 11% of high school respondents reporting violent abuses and a shocking 55% reporting psychological abuses by parents and household adults. A 2013鈥�2014 using slightly different measures and age groups showed sharp increases over teens鈥� reports of violent and emotional abuses by parents and caregivers.

The CDC鈥檚 2022 report cited violent abuses by parents that included hitting, beating, kicking, and otherwise physically hurting their children, while emotional abuses included insulting, swearing, and name-calling. The CDC did not ask about sexual abuse by parents and grownups鈥攚hich was in keeping with major commentators, like The Atlantic鈥檚 and The New Yorker鈥檚 , whose reports have dodged abuse issues altogether to blame teen problems on social media.

The CDC鈥檚 2022 report found 3 to 4 times more teens reporting parental abuses (55%) than its 2023 report found for school (15%) or cyber (16%) bullying, even though the agency鈥檚  is narrower than for . They are 4 times more likely to be violently abused by household adults and 3 to 5 times more likely to have attempted suicide than non-LGBTQ+ youth.

Decades of research show that troubled teenagers are the product of abusive, troubled adult families. and abuses inflicted by household adults are firmly linked to their children鈥檚 , closely tracking the increase in teens who  (26% in 2013; 44% in 2021).

Crises among America鈥檚 grown-ups are severe. Among parent-aged adults over the past three decades, per-capita rates of suicides and drug and alcohol overdose have more than tripled, reaching record peaks in 2020鈥�2022 during the COVID-19 pandemic. Adult depression recently also tripled, a 2020 study found.

Compared with 15-year-olds, today鈥檚 45-year-olds are 1.5 times more likely to die by gunfire, 1.5 times more likely to be criminally arrested, 3 times more likely to commit suicide, 4.5 times more likely to die from all violent causes, 25 times more likely to fatally overdose on illicit drugs (including 23 times more for fentanyl), and over 100 times more likely to die from binge drinking, the and report. Higher death rates are only the tip of the iceberg pointing to a much larger number of family problems.

This is not a 鈥渢eenage mental health crisis.鈥� It is a troubled-adult crisis compounded by the obliviousness of derelict leaders and interests who have failed to address America鈥檚 burgeoning epidemics. We should be shocked if teens 飞别谤别苍鈥檛 more anxious and depressed.

Abuses cause real-life injuries and deaths. The latest 鈥溾€� report, covering 2020, by the Children鈥檚 Bureau of the U.S. Department of Health and Human Services, tabulated about 160,000 child and youth victims of physical and sexual abuses and nearly 40,000 victimized by severe psychological abuses inflicted by parents and other household adults in substantiated cases that represent only a fraction of what actually occurs. project that nearly 500 homicide victims ages 12鈥�17 were killed by people ages 25 and older in 2020鈥攁 dozen times more than were killed in school shootings.

Missing (and Misrepresenting) the Point

Nearly all press reports seem to avoid admitting the disturbing realities that teens cannot evade.

A typical example is the scary-sounding but meaningless statistic that 鈥渟uicide is the third leading cause of death among teens.鈥� That鈥檚 not because suicide is particularly rampant among teenagers, but because teens rarely die from natural causes. For example, in 2021 and 2022, the to date records 4,184 suicides and 2,705 deaths from cardiovascular disease and cancer for ages 12鈥�19; and 8,661 suicides and 73,257 deaths from cardiovascular disease and cancer among ages 42鈥�49. Deaths can be lamented without completely misrepresenting teens as uniquely self-imperiled.

Unfortunately, legislators and other leaders have proven unable and unwilling to design effective responses to the United States鈥� epidemics of drug and alcohol , gun violence, suicide, and related self-destructive behaviors that together in the U.S. in 2020-2021. Yet, many of those same commentators and leaders eagerly blame social media and teens.

Should we also ban youths from associating with their parents, going to , joining organizations like the , , and going to , all of which have histories of large-scale abuses of children and youths and institutional cover-ups?

Studies that examine social media impacts in a nuanced fashion have found the large majority of teens benefit. Only 9% told a 2022 that social media negatively affects them personally. (Interestingly, 32% thought it negatively impacted other teens.) Pew found 鈥�80% said social media gives them some level of connection to what is going on in their friends鈥� lives, 71% said it鈥檚 a place where they can show their creativity, 67% said social media reassures them that they have people to support them, and 58% said it makes them feel more accepted.鈥� (One unspoken motivation for Republicans to back restrictions might be that, according to Pew, youth identifying with the Democratic Party or politics are both more numerous and more likely than Republican youth to communicate and organize.)

In contrast, few teens among both those who find social media positive and negative , like pressure to conform, feeling excluded, feeling worse about their lives, or being 鈥渙verwhelmed by all the drama.鈥� Both teen groups said their online experiences are better than parents think.

Surveys question youths on problems chosen by surveyors. When surveys ask , they cite worries over , not social media.

Leave Those Kids Alone

Congress has a dismal record of imposing effective age limits on what it deems dangerous behavior. Long-term research using improved techniques found that raising the nation鈥檚 , initially celebrated for 鈥渟aving lives鈥� (albeit at the cost of hundreds of thousands of annual teenaged arrests), actually just 鈥溾€� into young adulthood by disrupting the vitally important gaining of 鈥溾€� with alcohol. Likewise, imposing was associated more with than with reducing them among younger teens

Alarmism hurled at every younger generation for has proven useless. Within a couple of years, the alarmists are back to proclaim new youthful crises worse than ever.

of the early 1900s trumpeted the 鈥溾€� in 鈥渃hild suicide鈥� they blamed on popular media (鈥渃heap theaters, pessimistic literature, sensational stories鈥�). The American Youth Commission鈥檚 found 75% of young men were suffering debilitating mental troubles. Science News Letter reported in 1937 that kids 鈥渁s young as six to thirteen鈥� were being treated for suicidal thinking. (Pundits now call those kids the 鈥淕reatest Generation鈥�).

Surveys found mental health professionals of the 1980s estimating the average teenager was more mentally disturbed than psychiatric patients. In the 1980s, the psychiatric industry profitably hyped the 鈥溾€� to fill empty beds in overbuilt hospitals. In the 1980s, the Parents Music Resource Center, led by Tipper Gore, blamed rock music for teenagers鈥� woes. A declared suicide had 鈥渟oared鈥� among young adolescents. In 1998, blamed television for children being 鈥渢he most damaged and disturbed generation this country has ever produced.鈥� In the early 2000s, college and university counselors proclaimed a 鈥溾€� and won tuition increases to fund more staff. Apparently, it didn鈥檛 do any good. Counselors are back again, demanding more money because 鈥�.鈥�

What we should be studying is how teenagers, supposedly impulse-driven, , 鈥�,鈥� should be so unlikely to act self-destructively compared with supposedly stable, mature grownups. They don鈥檛 need authorities stepping in once again with more misdirected alarmism and destructive bans that trivialize the real-life problems they face.

When Rachel consulted ob-gyns, they either told her they wouldn鈥檛 provide an abortion or declined to provide recommendations. And since her insurance doesn鈥檛 cover abortion care, she鈥檇 have to pay the expensive fee out of pocket. 鈥淚 just wanted it to be over with,鈥� she says.

Feeling judged and scared, she and her mom turned to the internet, where they found a virtual abortion clinic. From there, the process was quick and straightforward: Rachel answered some screening questions to ensure she was a good candidate for medication abortion, chatted with a provider, and within days, the pills鈥攎ifepristone and misoprostol鈥攚ere delivered to her door. Now, Rachel says she would choose telehealth again if she were in need of an abortion. 鈥淚 liked that it was discreet and it was cheaper than other options.鈥� 

To be sure, many people are not as lucky as Rachel, a pseudonym we鈥檙e using to protect her identity. Even before Roe v. Wade was overturned in 2022, abortion deserts鈥攄efined as cities or towns located more than 100 miles from an abortion facility鈥攃overed large swaths of the United States, while many states had already instituted burdensome gestation restrictions and mandated waiting periods. was also being used to keep some of the most financially precarious communities from accessing abortion care.

In the two years since Dobbs v. Jackson Women鈥檚 Health Organization, abortion access has become even graver; near or total abortion bans, rendering entire regions of the country abortion deserts. But, despite the fear and shame that tends to cloud the subject, seeking abortion care should be as easy as securing any other telehealth prescription: a few clicks, messages exchanged, and then picking up the mail. 

In December 2021, the U.S. Food and Drug Administration , while professional organizations, including the American College of Obstetricians and Gynecologists, endorsed a telehealth abortion model. These legislative and organizational changes, coupled with , have revolutionized abortion care in the U.S.

It鈥檚 important to note that telehealth is not for everyone and some abortion patients want or need to go to a clinic. So, while avoiding the clinics is empowering for some, we all deserve access to care that works best for us. 

Finding Freedom in Virtual Clinics

While the future of mifepristone access in the U.S. depends on a , easy, convenient, and compassionate in-home abortion care continues to be an option for many. It鈥檚 still legal to access virtual clinics in 24 states and Washington, D.C., and now are happening through these clinics. The latest science from at the University of California, San Francisco, a research group I am affiliated with, shows that abortion via telehealth is . In fact, medication abortion overall is regarded as safer than many common medications including .

In response to the 2022 Supreme Court ruling, some states began passing proactive abortion protections, making abortion care in those states more accessible. Six states have begun passing , which allow health care providers to send pills to patients across state lines, while some people are even securing these pills on their own through what鈥檚 referred to as a 鈥渟elf-managed abortion.鈥� 

Research I鈥檝e worked on regarding self-managed abortion indicates that many people inaccurately believe it to be unsafe across the board (e.g., they think of 鈥渃oat hanger鈥� abortions). In actuality, even the World Health Organization recognizes medication abortion without doctors to be .

, when grassroots feminist activists in Brazil discovered that misoprostol, initially developed and prescribed as an ulcer medication, has abortifacient properties. This discovery led to the creation of whisper networks and 鈥溾€� groups, which have since spread throughout Latin America. The groups are now equipped with online tools like WhatsApp to and provide emotional support. 

After decades of protests led by these feminist movements, several predominantly Catholic Latin American countries鈥�, , and 鈥攄ecriminalized abortion. While many pregnant people in these countries can now enter local abortion clinics for the first time, pregnant people in the U.S., some of whom can no longer access clinics, are now reclaiming abortion freedom from the comfort of their homes.

The most recent data indicates that around have attempted a self-managed abortion, which is likely an underestimation. And in with abortion pills, 96.4% successfully completed their abortion without needing an additional procedure and only 1% experienced a medical emergency.

Dana Johnson, Ph.D., an abortion researcher at , is tracking this trend in the U.S. She鈥檚 particularly excited about the emergence of 鈥渁dvance provision鈥� in abortion care, where people can order 鈥渏ust in case鈥� abortion pills online before they鈥檙e even pregnant.

While there are various websites offering abortion pills, , run by Dutch physician Rebecca Gomperts, is one of the most recognizable names in the game. AidAccess ships advance-provision abortion pills across the U.S., even to states with active abortion bans, which Johnson says helps reduce the anxiety for those fearful of a hypothetical pregnancy: 鈥淭hey won鈥檛 have to wait for shipping times,鈥� she says. 鈥淭hey don鈥檛 have to worry about someone intercepting the mail. They can tailor it to their lives.鈥澨�

Johnson and her at the University of Texas, Austin, which has surveyed people across the U.S., have found that a lot of the people who order pills in advance are folks with health issues for whom a pregnancy could be dangerous and even deadly. They鈥檙e right to be worried, as story after story has emerged about pregnant people being unable to receive abortions even in the face of .  

Some people, Johnson notes, are even ordering these pills so that they might be able to help someone else with an unwanted pregnancy. 鈥淭hey were really proud to share medications with the people in their networks. They definitely viewed themselves as activists,鈥� Johnson says. 鈥淎nd a lot of these people who we spoke to 飞别谤别苍鈥檛 necessarily activists before.鈥� 

Politicians can close down abortion clinics and pass increasingly draconian bills, but at the end of the day, ( believe abortion should be legal in at least some circumstances). If anything, research such as Johnson鈥檚 shows that people are more engaged and knowledgeable on abortion than ever before. 

Abortion in the Medicine Cabinet

In a country with abysmally high , particularly for Black people, and where , having abortion pills in the medicine cabinet is a prudent safety precaution. Johnson recalls one interviewee telling her, 鈥溾€榊ou wouldn鈥檛 live in a house that didn鈥檛 have a fire extinguisher,鈥� and that鈥檚 why she bought the pills.鈥� Another respondent compared it to traveling with an EpiPen. Perspectives like these offer a new way of thinking about abortion: Rather than treating it as a scary, shameful experience, abortion pills can simply be a part of one鈥檚 health care arsenal, tucked on the shelf between Tums and Advil.

Other parts of the health industry that were historically considered radical or fringe have also become part and parcel of health care with widely expanded access. Consider mental health, for instance鈥攁n area of health care long , with a history of criminalizing patients or relegating them to . Now, thanks to the , insurance companies must cover mental health care, and it鈥檚 possible to use telehealth to see a therapist and/or a psychiatrist.听

Getting antidepressants or antipsychotics today can be as simple as seeing a doctor on video and picking up the medicine. You can even keep anti-anxiety pills on hand in case of a panic attack. Why should abortion pills be any different? 

While sexual and reproductive health care are often deemed the most sensitive or controversial aspects of health care, other medicines within this realm have been mostly destigmatized in order to increase access. For starters, people who are concerned about HIV can now take (pre-exposure prophylaxis), a precautionary pill that lessens the chances of contracting the illness, or PEP (post-exposure prophylaxis) after a potential encounter. 

There are also virtual clinics for HIV/AIDS prevention, including , which also provides contraception, mental health care, and herpes treatment. Even Plan B, which is closer to the cultural land mine of abortion than other medications, is now available over the counter. Doctors can prescribe the medication to patients who want to have it on hand just in case, rather than needing to jump through hoops for access in a moment of crisis. 

Bringing Back Your Period 

, which refer to a regimen of mifepristone and misoprostol used in a different way, might be the final frontier in the transformation of our understanding of abortion. Imagine this: Your period is a few days late and you鈥檙e worried you might accidentally be pregnant. Some, like Rachel, would take a pregnancy test and schedule an abortion. However, for those who don鈥檛 want to have an abortion or don鈥檛 have access to the procedure, these pills can simply 鈥渂ring your period back.鈥� You鈥檒l never have to know whether you were pregnant or whether your period was simply late for other reasons. 

Wendy Sheldon, Ph.D., the lead scientist on , found that interest in period pills in the U.S. 鈥渃ould be substantial.鈥� During her study, which included nearly 700 people across nine clinics, she and her team found that 70% of patients who didn鈥檛 want to be pregnant said they were interested in taking period pills without a pregnancy test. 鈥淚t was enormous,鈥� Sheldon says. Indeed, she and her team were surprised to find no difference in the levels of interest between blue and red states, indicating that even people living in states where abortion access is protected would be interested in period pills. 

Then why have most people never heard of them? While period pills are technically legal across the country, they are caught in the ideological crosshairs of the abortion debates. On one end, groups who seek to ban or highly restrict abortion view period pills as indistinguishable from abortion鈥攖hese days, anti-abortion groups argue that more and more parts of reproductive health care, like or , should be considered abortion. On the other end of the ideological spectrum, abortion-rights groups view period pills as reinforcing abortion stigma, and that empowering people to circumvent a pregnancy test and an abortion contradicts the talking point that abortion is a normal part of health care. 

Additionally, while period pills have been embraced in countries with poor abortion access around the world (from to ), physicians in the U.S. are skeptical. Some, Sheldon notes, are unwilling to prescribe abortion pills in what鈥檚 currently considered 鈥渙ff label,鈥� meaning, these pills are only officially approved to be used after a positive pregnancy test. 鈥淚 think everyone knows that it鈥檚 safe,鈥� Sheldon says, before adding the caveat, 鈥淲e don鈥檛 have enough data yet to publicly convince clinicians.鈥� But in order to get this data, researchers and clinics need funding. Sheldon, for one, was working on a newer study testing the efficacy of period pills but ran out of funding and had to shutter the research. 

Ushma Upadhyay, Ph.D., is a researcher currently leading the first clinical trial on , but recruiting clinics and participants for the study has been difficult. 鈥淭he main obstacle to recruiting people into the study is that people just don鈥檛 know it鈥檚 a thing,鈥� she says. 鈥淚t鈥檚 not mainstream yet. It hasn鈥檛 been accepted.鈥� Despite the difficulties, the research must go on. Upadhyay envisions a future in which people鈥攑roviders and patients alike鈥斺€渆mbrace the unknown鈥� as well as the complexity of pregnancy and abortion. 

If we, as a society, can embrace this complexity, we can forge into this new phase of abortion freedom, where it is so normalized that patients can chat with a primary care provider or even urgent care and pick up misoprostol at a nearby pharmacy without worrying about being shamed, let alone arrested. 

Across these various cases, one thing remains clear: While abortion is more restricted than ever before, freedom also abounds. Amid horror story after horror story鈥攅specially for those whose pregnancy requires in-clinic care鈥攖here are also people taking back their bodily autonomy. Abortion pills keep us safe in the face of bans, whether we order them on an app, keep them on hand, or use them in novel ways. While politicians seek to squash this idea, abortion should remain easy, convenient, and stress-free鈥攁nd we, regardless of what happens at the Supreme Court this summer, have the power to help our communities ourselves. 

Note: Whenever you read the terms BIPOC (Black, Indigenous, and people of color), racialized people, and racially marginalized, I mean them synonymously while understanding the distinctiveness of experiences and respective identities of racially oppressed peoples.

Whenever I refer to BIPOC, I refer to us as 鈥渨e,鈥� because I, the writer, identify as a person of color with collectivist inclinations in the way I use language.

July is BIPOC Mental Health Month, a month that recognizes the mental health experiences and struggles unique to Black, Indigenous, and people of color in North America. Not many people know of this month, but whenever we hear about it, we typically read about the numbers on how many of us are experiencing mental illness and distress, the disparities within these numbers, how many of us are getting professional help, and how many are not. These reports aren鈥檛 inherently bad, but what doesn鈥檛 get discussed as often are the causes as to why mental illness and distress exist in the first place. The stats are over-reported, but the causes and contexts are under-reported. I suspect that this might be a way to exempt the system at large from being responsible for maintaining a capitalist and racist status quo, which consequently causes cumulative stress. By leaving these systemic causes unmentioned, it becomes easy to blame the patient of color for being sick and for staying sick鈥攁 form of racial gaslighting in clinical contexts. Whatever the agenda behind these reports (or the attempts to under-report), it has to be clear, at least here, that the causes for mental and emotional distress are for Black, Indigenous, and people of color.

For some of us, there is a historical stigma ingrained when it comes to the topic of mental illness.

There are countless stories and cases that back this up. We鈥檝e seen systemic and structural racism in the media, heard or witnessed it from our families and communities, and experienced it ourselves. That said, this is not an essay that gives the trauma from racialized violence and White supremacy center stage, not to diminish its truth but to highlight other truths. More than exploring how BIPOC are disproportionately impacted in experiencing mental health issues, I鈥檇 like to focus on why we are also experiencing the challenges in accessing the support and care to address and tend to these issues.

A widely known reason why it is more challenging for BIPOC to access mental health services is racial poverty. Black and Indigenous communities have the highest poverty rates in the U.S., with Black Americans at 19.5% and Native Americans at 25.4% as of 2018 (the U.S. Census Bureau data on poverty for 2019鈥�2020 does not show Native Americans or Alaska Natives as a category for a racial group; more information ). poverty rate has increased to 17% since 2020, and Asian communities鈥� to 8.1%. Therapy is expensive, and with the reality of racial inequity, the majority of racialized communities likely cannot afford it鈥攐r their insurance cannot adequately cover these sustained services.

Another reason why racialized communities do not pursue mental health services is our common suspicions toward therapy. For some of us, there is a historical stigma ingrained when it comes to the topic of mental illness. Years ago, when I talked with my family about the potential need for therapy due to depression and anxiety, they responded by labeling it as 鈥渁 White people issue鈥� or 鈥淔irst World problems.鈥� They even went as far as indicating that my depressive episodes were a sign I wasn鈥檛 grateful enough for my family鈥檚 sacrifices and generosity, that I would still need extra help to get by in life. Other racialized families also have concerns around 鈥渇amily business,鈥� where there鈥檚 an expectation to want to keep鈥攐r hide鈥攊ssues of the family within the family. Looking back at it now, I know my feelings were invalidated, but in a way, I can see their point. It is hard for BIPOC to entrust their mental health struggles to an institution that is largely run by White people.

Although things are changing within mental health communities, only a few mental health professionals have competent awareness of cultural and racial identity, let alone incorporate this awareness in clinical treatment. This inaccessibility includes but is not limited to language barriers between therapist and client. Undocumented people from immigrant and diasporic communities also need to be vigilant around services with high degrees of surveillance, and therapists are expected to take this seriously as mandated reporters. 

Therapy can be very helpful, but we have to remember that therapy is not the standard nor the only place to find healing and safety.

Racialized communities have generationally been suspect about whether therapy is meant for us, as these services are coming from a predominantly White institution that is as racist as other institutions in North America. For instance, the mental health industry is no stranger to a culture of punishment and policing, while also replicating environments of incarceration from that of the prison industrial complex. 

鈥淧eople with mental illnesses are severely over-incarcerated,鈥� according to by forensic psychology practitioners Hannah Klukoff and Haleh Kanani. Their research shows that even though mental health institutions have become more humane compared with the asylums and psychiatric wards of the 1800s, the emphasis of confinement over care continues within mental health settings today. This is shown in the of mentally ill people, and Black and Indigenous populations are over-represented in these in-patient settings. The punitive structures of therapy settings are also seen in how mental health crises are handled, especially when people in crisis go through . Again, Black, Indigenous, and disabled peoples are over-represented in these settings.

What do we do with what we know? Therapy can be very helpful, but we have to remember that therapy is not the standard nor the only place to find healing and safety. Therapy has benefited numerous lives to develop a strong self-awareness in light of their background and trauma, and it is also not the only setting where this type of transformation can occur.

In de-pedestalizing therapy, how can we pursue resources and foster spaces of healing that reside outside the institution and are instead led by BIPOC communities? What if the medicine we are looking for has been within us and our communities all along?

Rhythm and Ritual

There are medicinal properties to and . This has to be navigated delicately, because many racialized individuals have been harmed by organized religion. We can recognize this while also reimagining and recreating our sense of spiritualities without retaining the outdated structures of religion based on shame, punishment, misogyny, homophobia, and transphobia.

The spiritual traditions of BIPOC have components of embodiment (dancing, meditation, breath work), rhythm or repetition (chanting, altar-setting, ceremony), and connecting with one鈥檚 community and with a higher being (prayer, visiting temples or sanctuaries). These elements make up so much of the healing practices in the wellness industry today鈥攁 majority of which were banned during colonization but are now used and appropriated by White practitioners. (An example of this is how non-Indigenous peoples have appropriated .)

What is it like to reclaim the traditions and the sense of spirituality based on your lineage or your ancestors鈥� sacred medicine and traditions? And if you have already reclaimed them, what is it like to reflect on how these traditions and medicine have always served as invitations to strengthen your connection to your roots and ancestry?

A Sense of Interconnectedness

One of the strengths BIPOC communities have is our strong sense of collectivism. Compared with the hyper-individualized West, we have an innate understanding that we are who we are based on the life and safety of our community members. We have an inner knowing that when one is suffering, so is the whole. Therefore, we intervene as best we can. 

There are so many names from many languages that embody this concept. In Tagalog, we call this kapwa. Kapwa means the shared self, or 鈥�.鈥� In South African philosophy, this kind of inter-relatedness is called ubuntu, which means 鈥�.鈥�

There is a powerful co-regulating component to interconnectedness, where our bodies reach a degree of homeostasis or state of safety when our nervous system attunes with another. This is especially beneficial to individuals who have difficulty managing their internal world (emotional responses, self-image, etc.). Having others to co-regulate with may increase their capacity to manage and understand their inner life, and therefore be able to relate with the external world.

We can be mindful of this while also being careful of enmeshment鈥攖he extreme end of collectivism鈥攚here we forfeit our unique selfhood for the sake of the collective. The hope is to be united rather than to be uniform. The goal is not sameness. To refer back to the earlier definitions, we remember that there is an emphasis on the distinct self as much as there is with the community.

Ancestral Medicine

Whenever I teach about finding our ancestral medicine, BIPOC participants sometimes anticipate the most grand or even otherworldly answers. I can understand this, because this used to be me. But what I鈥檝e come to find in my work and my personal formation is that ancestral medicine might exist in our everyday lives already. In fact, our medicine might already be in our cupboards, pantries, and refrigerators.

I am one of the Filipinos who lightly picks on my parents for using Vicks VapoRub for every sickness that could possibly exist. What I have underestimated is that the menthol in Vicks has healing properties that relieve muscle strains, reduce inflammation, and alleviate fevers and even rashes. Menthol also lowers cortisol (a stress hormone) in the blood, which means it can reduce anxiety.

Many of the natural foods, drinks, ointments, and oils our parents and elders give us (in some cases, insist upon us) are anti-inflammatory and have medicinal properties. This could range from the green tea that has bioactive compounds, to the coconut oil my mother constantly tells me to gargle every night, only to find out later about its antimicrobial properties.

Is it possible that the compass guiding us toward our healing points us back to ourselves and our relationships? The relationships with our communities, the natural world, our roots, and our ancestors. 

鈥淵ou are not defective鈥� is a refrain Resmaa Menakem speaks to the BIPOC community, . What he means by this is that we exist in a system that causes, aggravates, and spotlights our trauma. We can choose to evolve and shift from this narrative. We can courageously confront and move through our pain from oppression, while also returning to the healing properties of who we are. How does that make us defective? We are more than just whole. We are the medicine.

In 2017, Surgeon General Dr. Vivek Murthy penned an , where he named loneliness a growing health epidemic. This loneliness was so dire, Dr. Murthy argued, it could shorten a lifespan by . This wasn鈥檛 the first time loneliness had been framed as a public health issue. The New Republic, for instance, published 鈥溾€� back in 2013, and the article began adding new colors to the canvas of men: loneliness, isolation, and disconnection.

Only six months later, Billy Baker鈥檚 , titled, 鈥淭he Biggest Threat Facing Middle-Age Men Isn鈥檛 Smoking or Obesity. It鈥檚 Loneliness.鈥� Since then, the men鈥檚 loneliness epidemic has become a touchstone for understanding how, and to what extent, men are struggling. 

On all levels of the loneliness epidemic, women are right there, charting the course.

But lately, much of the conversation around men鈥檚 loneliness has been spearheaded by women. Last February, in , Magdalene J. Taylor explored loneliness vis-脿-vis in men under 30. The article encouraged men to screw their way out of isolation (a prospect I imagine is exhausting for the many women pursued as a result). Then in July, by Christine Emba bravely charted generations of lost men and offered a map out of the wilderness that anyone from incel, to manfluencer, to quietly isolated, to well-intentioned young man could resonate with. On all levels of the loneliness epidemic鈥攆rom , , and life-kits teaching men 鈥攚omen are right there, charting the course.

Certainly, there are public appeals made by men. The Boston Globe columnist Billy Baker went on to about men鈥檚 loneliness and friendships, President Biden of this year, and Dr. Murthy has continued his work on the subject, this May (though both President Biden and Dr. Murthy tend to address loneliness in general rather than gendered terms).听

But no matter who wrote what, the implicit takeaway is clear: Everyone should care! Women should care! No man left behind! But caring is a tricky word for many women, as it brims with gendered expectations of labor, open availability, and mental load. For many women鈥攅specially those who are sexually and romantically involved with men鈥攖he burden of investing in men and their problems often .

And while men鈥檚 loneliness certainly requires intervention, the real question is who, exactly, is expected to carry the load of care?

Care doesn鈥檛 mean fixing.

鈥淲omen have enough problems of their own to deal with. They don鈥檛 also have to be responsible for men鈥檚 problems,鈥� says Richard V. Reeves, author of the recent book Of Boys and Men: Why the Modern Male Is Struggling, Why It Matters, and What to Do About It. 

Reeves is more or less the authority on the state of boys and men in the United States, and , which he hopes will be the first research-based, nonideological organization vested in improving the lives of men. But when addressing my suspicions鈥攖hat women are too often tasked with the emotional rescue of men, rather than invited into mutual solidarity鈥擱eeves thinks it isn鈥檛 so simple. On the one hand, he agrees that men are often emotionally dependent on women, a dynamic that arose in part from the 鈥減atriarchal economic structures [that] held women down economically, but propped men up emotionally.鈥� And now, , 鈥渁 lot of men are falling emotionally,鈥� says Reeves. But it gets more complicated when considering how institutions neglect men and create a vacuum women are left to fill. 

Take the 鈥攁 small but indicative example of a larger whole. The office was established in 1991 within the U.S. Department of Health and Human Services. And as there is , resources that should be aimed at men end up re-oriented toward women (like tasking women with talking about men鈥檚 mental health). The result? The lack of institutional resources for men, by convenience, is outsourced to women.

Even aside from the institutional shortcomings, there鈥檚 a cultural hesitancy to publicly address men鈥檚 needs. 鈥淎 lot of men, particularly men who might be in a position to lead in organizations on this, are very reluctant to publicly voice concerns for men. And the reason for that is because they鈥檙e afraid,鈥� says Reeves. 鈥淎 guy talking about the problems with guys is going to be looked at with suspicion. Especially by women, right?鈥� Here, I recognize myself, and remember the when he launched My Brother鈥檚 Keeper, an initiative for at-risk boys.

Part of the issue, certainly, is that there鈥檚 a conflation between the data-driven reality of the lives of many men鈥攚ho account for 鈥攁nd a culture that often writes off men鈥檚 gendered issues as just another tantrum of toxic masculinity. Even in queer communities, it鈥檚 hard to avoid obtuse, . This environment makes it challenging to persuade men to take up the mantle of men鈥檚 issues, says Reeves, because many men feel the association is dangerous. Ironically, this creates another vacuum for women to fill because, as Reeves says, it generally feels more permissible for women to talk about men and gender on the public stage. 

However, when it comes to women in positions of authority, the responsibility may feel a bit more earned. Reeves clarifies that institutions like the White House Gender Policy Council should take up the cause of men鈥攁nd as for women鈥檚 groups and advocacy networks? 鈥淚 am asking them not to oppose the cause of men, not to criticize those who are in good faith trying to address it, not to make it so risky for them that people won鈥檛,鈥� says Reeves. 鈥淚 do think there鈥檚 a role for a kind of studied neutrality on the part of women.鈥�

Of course, men are not a monolith鈥攕ome really are well-intentioned, . Still, I believe people should have a stake in the well-being, dignity, and happiness of others. But care doesn鈥檛 mean fixing, and women (even journalists) don鈥檛 have an inherent responsibility to raise the alarm or save the day.

Harris is and . Recently, at a campaign event in Detroit, she showed attendees when she shut them down by , 鈥泪蹿 you want Donald Trump to win, say that. Otherwise, I鈥檓 speaking.鈥� A week later, Harris offered a more when protestors interrupted her in Arizona, stating, 鈥淣ow is time for a cease-fire in Gaza.鈥� So, while I am heartened that Harris鈥� team seems to be listening to the cries of those demanding an end to this U.S.-backed genocide (maybe), her politics have never thrilled me. Despite that, a part of me found the possibility of a Black woman POTUS exciting. Another part of me grew uneasy as I considered how her elevation would be fuel for blowback against Black women all over the country. 

In my book Black Women Taught Us, I explain how many Black Americans were concerned about President Barack Obama鈥檚 safety after his election. Obama began receiving death threats as early as 2007 when he was still a junior U.S. Senator in Illinois, prompting him under protection. Many Black Americans are similarly concerned today, not only about Vice President Harris鈥� safety, but also for the safety of Black women and femmes everywhere as the election has already revealed the deeply racist and misogynoiristic ideas many white Americans, including , hold about Black women.

In this social moment, when self-care has become such a central focus for many Black, Brown, disabled, queer, and trans communities, many people have emphasized rest, manicures, massages, and other activities that are physically restorative. While these are habits we should all prioritize, they are insufficient in addressing the underlying effects of exhaustion, stress, emotional burnout, and mental distress that typically stem from the burden of white heteropatriarchal capitalism. We are actively fighting fascism. Many of us are doing so in our personal and professional lives simultaneously. We also have to contend with the fact that the Black woman the left has chosen has not proven that she will protect those most vulnerable among us. The political environment has only heightened the daily violences that many Black women and femmes are expected to endure just to survive. We can鈥檛 control any of the ephemera around us. But we can absolutely build safer spaces around us that protect us from the wear and tear of everyday life under this white heteropatriarchal capitalist nation state. 

One of the most important steps I took in creating a healthy space between my mental and emotional life and the violence of the world was enacting boundaries. Nedra Tawwab鈥檚 path-breaking book, , has been an essential handbook for me along this journey. What I learned from Tawwab鈥檚 book was not just that we should have boundaries with others, but also that some of the most difficult boundaries to set and keep are the ones we create with ourselves. At this moment, I am fortifying my boundaries with my social media usage, my engagement with toxic people, and my commitment to healing and personal growth.

In 2022, I was in a toxic relationship with a woman who frequently used social media to monitor my behaviors and control me. During that time, I had a major anxiety attack after I found out that her friends and family members would monitor my social media posts and report back to her, creating storylines that linked my comments to our relationship, and instigating ideas that our relationship was struggling. After being , I realized that people鈥檚 actions on social media frequently reflected the ugliest and most violent internal narratives they held about others and often about themselves. It also helped me realize that I could simply remove these people鈥檚 access to me permanently. While I had 鈥減urged鈥� my friend lists before, I came to the conclusion that these removals of toxic people would have to be a regular occurrence. Annually, in fact.

Every year since, I examine who I am connected with on Facebook, Instagram, and Twitter (now known as X) to ascertain whom I am allowing to shape my thinking and enter my psychic space each day. I agree with a writer at Salon who suggests that . But, beyond that, I learned from therapy that any relationships I maintain out of a sense of obligation may potentially be unhealthy. Keeping people around who never interact with me, don鈥檛 show any interest in my work or interests, or whose content makes me uncomfortable just because we sat next to each other in 11th grade trigonometry is one way I inflict stress on myself. Cutting my Facebook friends list from nearly 3,000 strangers to 470 friends and colleagues was one of the best things I did for my mental health.

To protect my psychic energy, I have also refrained from engaging in political conversations with people who are committed to misunderstanding me. I put this into practice years ago when I realized that, while I had always assumed that these people would always be angry, racist, white people, there are also, in fact, many people committed to misunderstanding me who look, love, and believe just like me. 

There was a time when I felt drawn into confrontations with other Black and queer people. I felt obligated to teach them, to offer them grace and kindness even when they had extended none toward me. I allowed myself to be controlled by other people鈥檚 emotions and their insecurities, mainly because I had successfully convinced myself that I was responsible for soothing and pacifying other people. I finally set a boundary that I would no longer be performing emotional labor for others from a place of guilt and a sense of duty. That energy, I have decided, should be reserved for me.  

Taking personal control of my life and my choices rather than living in response to the whims of the world around me has created the safety and protection I deserve. It has also opened up space in my life for study. I have found in my own Black feminist work and journeying that reading and meditating on the words and works of other Black feminists and queer thinkers has served as both a balm and a site of training. 

This election cycle, I want Black women and femmes to create personal and professional boundaries around themselves that allow them to be their best selves each day. It鈥檚 our birthright. And it鈥檚 time for us to claim it.

In the beautiful book , Jos茅 Esteban Mu帽oz writes, 鈥淭he here and now is a prison house.鈥� Our present is in Gaza, live streamed on our phones. Our present is a global imperial order in which President Joe Biden will do anything to maintain his colonial outpost in the Southwest Asian and North African region, including being a party to genocide and alienating who voted for him.

Racialized capitalism ensures that it is far more profitable to drop thousands of bombs, the equivalent of more than , on a trapped population of 2 million people in Gaza, killing more than , than to provide them with sustenance and democracy.

Abolition demands an end to colonialism, so abolitionists must be part of the movement for a free Palestine. As a statement from the coalition notes, 鈥淲e, queer Palestinians, are an integral part of our society, and we are informing you: From the heavily militarized alleys of Jerusalem to Huwara鈥檚 scorched lands, to Jaffa鈥檚 surveilled streets and cutting across Gaza鈥檚 besieging walls, from the river to the sea, Palestine will be free.鈥�

I am an abolitionist, and I wrote Cora, one of the protagonists in , a book I published in 2023, as a character willing to make great personal sacrifices to dismantle the prison-industrial complex.

When I was writing Atoms Never Touch, then president Trump was enforcing a , turning the Islamophobic racism of the U.S. government into policy, making centuries of Orientalism plain as the words on his executive orders. In the book, many of these acts are represented by the fascist president who wins the election in Cora鈥檚 world.

Cora is frustrated and furious about the president in her world being elected despite his record of sexual assault. In her emotional state, she finds the courage to break out of the rules governing her normal life鈥攈er day job, retirement account, and credit score鈥攁nd do something revolutionary.

Cora decides to use her hacking skills to delete criminal records, thus releasing people from prison. Even if her motivations are good, it鈥檚 a misguided attempt at creating social change through an individual, lone action, apparently disconnected from larger social movement strategies.

As Walidah Imarisha and adrienne maree brown write in , 鈥淲henever we try to envision a world without war, without violence, without prisons, without capitalism, we are engaging in speculative fiction. All organizing is science fiction.鈥�

I was profoundly inspired by this idea and moved to write Atoms partly in response to it. Yet Atoms does not imagine a world without fascism, colonialism, or Islamophobia; instead, it depicts the traumatic details of the unfolding of those things even more powerfully across the U.S., in the alternate timeline that Cora lives in.

But Atoms does imagine a possible way out that鈥檚 perhaps utopian and perhaps mere wish fulfillment: In this world, love between two trans Latinx women brings about a scientific discovery that allows everyone to travel between possible universes. This focuses on the many-worlds interpretation of quantum physics, an interpretation of the fact that subatomic particles exist in many locations at once until detected, which posits that all possible universes do exist.

In , Karen Barad refers to the cognitive repression and psychosocial factors that prevent physicists, and the public, from accepting the unruly conclusions of quantum mechanics that point to multiple universes.

In Atoms, Cora and Rea study the equations of quantum physics using an algorithmic visualization tool that allows them to interact with possible outcomes of equations in augmented reality. They do find a way out of the prison house of the present, out of the dystopian timeline that is global neocolonialism and racial capitalism and into somewhere else.

Yes, it is perhaps fantastical and utopian, but I ask us to consider the possibility of a universe where life can be different from the oppressive order that structures our lives today. The way out starts with Cora鈥檚 own rejection of the gender she was assigned at birth, leading her to find solidarity with oppressed people everywhere, and leading her to a relationship worth fighting for.

Mu帽oz wrote: 鈥淨ueerness is not yet here. Queerness is an ideality. Put another way, we are not yet queer. We may never touch queerness, but we can feel it as the warm illumination of a horizon imbued with potentiality.鈥�

While trans liberation is not yet here and a free Palestine is not yet here, we can feel this possible future just as surely as we can feel the warmth of the sun.

We will find each other because we are worth fighting for. We will be free from the policing systems of cis-heteropatriarchy  here and in Palestine, in our lifetimes, or in some possible future timeline.

Editor鈥檚 Note: In the first three chapters of Atoms Never Touch, the reader is introduced to the main characters, Cora, an abolitionist computer hacker, and Rea, who is slipping through alternate universes. Below is an excerpt from the book.

That night, I lay on the couch with tears streaming from my eyes, watching a fascist be elected president of the United States.

I received a text from my dear friend Xandra: 鈥淗ey Rea, come join me downtown at the protest. We鈥檙e at Figueroa and Pico!鈥� I canceled my classes and drove to meet her. I couldn鈥檛 be alone, crying on my couch; I had to be with people. I was grateful to be in a city with so many other Latinx people. It was a city where the election of this man who had associated our people with rapists, when he himself was one, was met with massive outrage. People were flooding the streets en masse, waving Mexican flags, covering their faces with bandannas, driving lowriders alongside the march.

We marched for hours, keeping our chants simple for all the people who were there marching for the first time and didn鈥檛 know the more fun but more elaborate beats of chants from other movements. When Xandra had to leave, I stayed with the march. We marched up and down hills, the march leaders routing around the police whenever they tried to stop our march at an intersection. At one point, deep in downtown, on Flower and Eleventh, we could see the lights of police cars coming from far away, slowly, as we realized another march with hundreds of people in it was marching toward our contingent to join us! Our march was already around a thousand people strong before even stopping to allow them to come down Eleventh and merge with ours.

My voice was hoarse from chanting. The march had been so impulsive that no one had even brought a bullhorn. These were not experienced organizers so much as they were people who had thought that activism was hopeless until now. Maybe they still thought it was hopeless, but there seemed to be a collective need to scream and cry, in public, together.

That鈥檚 when I noticed her also standing just outside the crowd. A Latina woman whose muscular, tattoo-covered arms were revealed by her Black Lives Matter t-shirt, the sleeves of which she had stylishly cut off herself. Flowers trailed down her gorgeous brown arms, connected by curves resembling the traces of particles like pions, the result of high-speed collisions produced in accelerators and supernovas, which exist only briefly when a high-energy proton collides with another particle. I felt myself still in that moment as I looked at her. Her eyes locked on the police; she was wearing ear buds. Her eyes were glassy like she was looking at something I couldn鈥檛 see, and her fingers were twitching busily. It looked like she was using an invisible keyboard鈥攕urely, she had auglenses and was recording this entire scene.

The rays of light and shadow scanning across her body alternated from red to blue and white, creating a cacophony of angles that she seemed unmoved by. Her beauty was unfolding in my consciousness as I noticed how close she was standing to the police, even as they were violently pushing people back with their electric bicycles. She was close enough to see their badge numbers鈥攐r at least those whose badge numbers were not covered with black tape, as most were that night.

The chanting, the sirens, and the helicopter all faded away as she held a stillness that mirrored my own. In the many-worlds interpretation of quantum mechanics, many of the impossibilities that quantum mechanics presents, such as action at a distance and the uncertainty of particle locations, are solved by the idea that in any quantum experiment with multiple possible outcomes, all outcomes exist in different universes. Quantum entanglement is the phenomenon of two particles that can be separated across vast distances and yet the quantum states of one particle still correlate to changes in the other. Einstein referred to this as spooky action at a distance.

Almost any event can be a quantum experiment, such as a flickering lightbulb as evidence that even light exists in packets or quanta. Still, moments like this one have always felt to me like experiments of particular relevance. How can we ever know all the possible outcomes and variables that contributed to the meeting of two people? What quantum effects happen in the moment when the police car鈥檚 red light flashes off her body and sends that image to my brain, resulting in this powerful attraction? What patterns of shape, like the movement of her hair, reach the neural networks in my hippocampus, interact with my memory, and create this feeling of warmth down my body? How does the context of this political moment, and her act of resistance within it, register in that pattern recognition and interact with all the work I鈥檝e done on myself to heal and build healthy relationship patterns in such a way that I decide to walk toward her?

This excerpt from appears by permission of the publisher.

I often reflect on how small things, like my children playing loudly in our backyard, would be impossible in a different time or place. My heart aches knowing I experience a level of freedom and agency the mothers in my lineage couldn鈥檛 visualize, let alone exercise. Still, the artifacts of injustice don鈥檛 feel distant. I see the afterimage of 鈥渨hites only鈥� signs every time I blink. I lose my breath calculating how I鈥檇 explain such an explicit color line to my children, though today鈥檚 covert line is equally overwhelming. And while so many things are better, so much feels the same. 

I found the thread that helped me make sense of this feeling during graduate school. The exact moment I learned of , an English legal doctrine passed in 1662 that loosely translates to 鈥渢he status of the child follows the mother,鈥� escapes me now. But I remember feeling something shift. I felt like I had learned the answer to a question I hadn鈥檛 known to ask. I recognized this revelation as a through line, equally past and present, and sensed I鈥檇 encountered the most crucial mothering lesson of my life.

Enslavers created the principle to enshrine the relationship between race and slavery. It solidified enslaved women as capable of giving birth but never truly mothers and created a binary between white and Black wombs: The former held an unborn human; the latter was a queue for chattel. 

I wanted to parent in resistance. But I found mothering in anticipation of harm made me tired.

Partus sequitur ventrem explained why the Black mothering experience felt inseparable from narratives of hypervigilance and trauma. The doctrine captivated and taunted me with reminders of why I wasn鈥檛 carefree like the white moms I found community with. But it also offered direction in my mothering: I could fight wholeheartedly to free my children. But if I was unfree, my efforts would be futile. Partus sequitur ventrem revealed that my foremothers and I share the goal of raising free Black children despite contextual differences. 

, a licensed clinical social worker certified in perinatal mental health, says that historical circumstances limited Black mothers鈥� agency in parenting in every area鈥攆rom conception to caring for our children. Often, that involved hard choices. Williams says this history can leave Black mothers with a feeling of powerlessness and the pressure of knowing: I have to keep my children safe, especially when I know the systems are not keeping my children safe. 

鈥淎nd still, today, we have so many different reminders and events that the system is not supporting our care and well-being,鈥� says Williams. 鈥淭hat pressure on us as Black mothers to wonder: If I don鈥檛 choose my kids, am I also dismissing them like the system is?鈥�

Black infants and birthing people today face death-rate disparities comparable to . Black families are trying to make ends meet as layoffs disproportionately impact Black employees. We are grateful they鈥檙e not the identical stressors our ancestors experienced. But painful headlines like those describing the Texas Child Protective Services removing newborn from her 辫补谤别苍迟蝉鈥� care and 16-year-old being shot after going to the wrong house reveal that family separation and the dehumanization of Black youth hasn鈥檛 ended. 鈥淎 lot of us are carrying things that our ancestors and grandmothers didn鈥檛 get to resolve,鈥� says Williams.

It hurts to read the heritability of nonfreedom. Enslavement has ended, but this doesn鈥檛 feel like freedom. Generations of Black women have tried to pass an inheritance we never held. I wanted to parent in resistance. But I found mothering in anticipation of harm made me tired. It impacted my relationship with myself and my children; I was anxious, irritable, and often depressed. 

, a licensed clinical psychologist, says putting your mothering identity first is natural. But the pressure to be a 鈥済ood mother鈥� can lead to negative emotions, including exhaustion and social isolation. Similarly, parents can experience guilt and shame when they don鈥檛 meet their own parenting goals and expectations: 鈥淭his can lead to depression, anxiety, or even obsessive-compulsive tendencies, because even though we know perfection does not exist, we continue to hold ourselves to impossibly high standards and judge ourselves harshly when we are unable to meet them.鈥�

I know I鈥檓 the best mother when I start from the inside out.听

I found this especially true for marginalized parents. I felt guilty that I wasn鈥檛 more grateful to mother with new stressors instead of those my grandmother had. Shame told me it was my job to give my children the world because I had unprecedented access. I went through the motions of gentle parenting鈥攁nd the guilt, rage, and shame when I 鈥渇ailed.鈥� I grew resentful that I wasn鈥檛 giving my children the soft landing they deserved. But with reflection, I realized that gentle parenting wasn鈥檛 the problem: I had to start with myself. I needed something that met me where I was. So I built it.

I created a framework called #FreeBlackMotherhood to actively challenge the lineage of partus sequitur ventrem. But I realized perspectives on motherhood disparage all caretakers, albeit to varying degrees. 鈥溾€� is the expectation that mothers sacrifice themselves at the altar of motherhood and be judged by their capacity to mother based on race, class, and other parts of identity. This version of mothering weaponizes old harm in new ways. Like the dehumanizing English law of partus sequitur ventrem, intensive mothering reinforces a binary of valid and invalid mothers based on standardized expectations, when, in reality, mothering is subjective.

Williams notes a myriad of personal and familial factors鈥攊ncluding whether a parenting journey was planned鈥攊mpact how we show up as caretakers. She says we need 鈥渋ndividualized mothering plans鈥� in the same way we have individualized education plans for our children. Intensive mothering affirms motherhood, especially Black motherhood, as a site of suffering. It creates a racist, heteronormative, class-based definition of mothering where mothers carry a disproportionate share of the burden. The model also upholds individualized solutions to systemic issues and emphasizes responsibility over joy.  

Black motherhood is often seen as a , leaving little room for freedom, authenticity, and joy. Once I abandoned binaries, I realized my views didn鈥檛 conflict with gentle parenting: They conflict with standardized mothering that is rooted in white supremacy and patriarchy. But I know I鈥檓 the best mother when I start from the inside out. 

Montfort affirms that child-centric models, like gentle parenting, are a wonderful way to build secure attachments with our children. But they can鈥檛 be done at the cost of supporting the self. Placing my needs at the center reminded me it鈥檚 OK to pause and have days I don鈥檛 feel like mothering. Montfort says scheduling time alone, communicating with your child-rearing support team, and having a therapist can help during rough times.

Like Williams, Montfort supports abandoning a standardized image of mothering. She encourages caretakers to define鈥攐r redefine鈥攖heir values for themselves instead of basing them on prescribed models. This starts by asking who you want to be and what qualities you want to embody as a parent and taking small steps to get there. 

My journey is still unfolding. But I鈥檓 grateful I鈥檝e created a personal mothering practice that resonates with caretakers of diverse identities. 

My framework helps me break the binary that racism and intensive mothering created and helps me hold my love for myself and my children simultaneously. It encourages me to abandon the weight of mothering perfectly to reduce systemic harm. But it also reminds all of us that we deserve motherhood rooted in shared responsibility and joy.

The best way to transmit freedom to my children is to hold it myself.  

This is one of my deepest truths: If we are in relationship, no matter how scared or unskilled I may be, I want to repair with you. Part political commitment, part survival strategy, part just essence of who I am, holding out hope for repair is at my core.

Rupture is a given. We will disagree. We will hurt each other. We will sometimes find ourselves facing the irreconcilable. And we will need ways to make ourselves鈥攁nd each other鈥攚hole in the aftermath of rupture.

I have grappled with the dynamics of repair throughout more than 20 years of practice with transformative and restorative justice. In this age of deepening cultural and political divides, facing the election of our lifetimes and whatever comes after, it is more critical than ever that we learn how to be in principled conflict and repair with each other. Three things stand out to me in this high-stakes historical moment: We have much to learn about the possibilities of genuine repair, our unrepaired places are where we are most vulnerable to ongoing harm and domination, and the human capacity for repair is vast and stunning鈥攚hen we are given the support to move toward it.听

The Possibilities of Repair

This seems to be a principle of dominant society, often internalized and acted out by our communities and families: You will live wounded, unrepaired, and you better not expect anything more. Yet this grim promise is juxtaposed with an evolutionary drive toward relational healing. I believe each of us comes from a lineage鈥攏o matter how buried鈥攖hat knew how to heal, how to repair with each other. Throughout history, we have survived by bringing our harms to the circle of community and quite literally humming and drumming through them together. It is by design that most of us have no living memory of these possibilities. And still, they are there. We can find them. 

We don鈥檛 have to repair in every possible direction in order to have a meaningful experience of repair. The criminal legal system, especially in the United States, has limited our imagination to a zero-sum game: There鈥檚 a victim and a monster, and punishment is the only healing anyone gets. While this system may not have room for the possibilities of repair, our communities do. Sometimes we can鈥檛 repair with the person who hurt us most, but repair is possible within ourselves, with our close people, and with our larger community, which can offer us the medicine we need.

The Unrepaired

Those organizing systems of supremacy exploit our unrepaired wounds for their gain. They use them to split us, to co-opt us, to draw us to their ranks. They understand that without repair, the trauma they unleash will create cycles of violence in which our survival strategies will never get us to freedom. And despite our critique of these systems and strategies, many of us have internalized the carceral logic that tells us our best shot at healing requires separation from and disposal of those who have hurt us. How many projects have you seen fall apart, how many coalitions are under strain, because when conflict happens, we quickly choose sides, close ranks, and tell each other the story of how impossible and unworthy repair is?

It is time for us to tell each other new stories. People change differently than systems do. The strategies we use to push back on systems, to force them to change through shame and blame, do not produce life-giving change in people. The work of repair requires us to risk beyond our righteousness and bridge across narrow notions of identity, allegiance, and whose pain 鈥渃ounts.鈥� When we can hold the pain of multiple, divergent truths and lived experiences, we can remember our wholeness, our shared humanity, and let it guide us towards the mass-based people power we need to win.

Our Stunning Capacity

I will never forget sitting in a basement courtroom as Jonathan read his survivor impact statement, for the first time seeing the face of his shooter. He told in excruciating detail how the , had paralyzed him for the rest of his life, putting him in daily unrelenting pain, taking his career as a carpenter, his love of movement in sports and outdoors, and leaving him to answer his newborn daughter鈥檚 questions when she someday soon asks, 鈥淲hy can鈥檛 Papa walk?鈥� In the midst of all this, Jonathan told the court, 鈥淎 longer sentence will not help me heal, and I don鈥檛 believe that more time will help my shooter. My shooter can鈥檛 undo what he did on June 6th, and locking him away for longer will not enable him to heal. I believe he deserves a chance to do better.鈥� 

I鈥檝e found that the degree to which people can be open to the humanity of those who have hurt them is directly related to the degree to which they have been held well in their own wounding. Facing and feeling the immensity of our losses, the dignity of our rage, the depth of our sorrow, grows our capacity for connection beyond what we can imagine. I鈥檝e seen it while with Jonathan and so many other survivors of profound violence, with everything they鈥檝e lost, still reaching across the chasm of excruciating pain for repair. 

The Irreconcilable

And then, there is that which is irreconcilable. This word has often felt like the truest thing in the aftermath of Oct. 7, 2023. I was sitting in a grief ritual, surrounded by safe, imperfect humans, looking at an altar full of things we love and have lost, and I could not reconcile the images in my head of what was happening in Gaza at that exact same moment. I looked out the window at the trees blowing in the breeze, my child playing, warm food in my belly, and I couldn鈥檛 make sense of it. Why are we here and not in the midst of a genocide? How can life be like this and like that? Marching and organizing and and still, this terrible ache, this desperate feeling of complicity and helplessness. And so I fell down and wept, screamed and flailed with all that is unreconciled, irreconcilable. 

Facing the irreconcilable is part of repair. It is the part where we get really honest about the things and the people that we cannot change鈥攁t least in this lifetime. It requires the vulnerability to surrender into the limits of our agency, to know that we tried as hard as we could and still did not get what we wanted, what we needed, what we deserved. When we cannot face the irreconcilable, we often try to destroy each other instead. Our grief and rage get directed at each other, as we cannot tolerate the contradictions we live within鈥攁nd which live within us. 

Rather than annihilating those with whom we can鈥檛 repair, we can draw close to our trusted people and grieve what we do not know how to resolve. In this way, we can repair with ourselves and each other, even when accountability and justice are not possible. Repair is to make whole, not to make perfect. Not even to make right. Some things will never be made right. In accepting this and finding ways to live together with it, we expand our capacity to repair in the places where the openings are.

And so, I want to learn to repair with you. I want to sit in the circle with you, tell you in the rawest detail about how I鈥檝e been hurt, even by you, and hear in the rawest detail, how you鈥檝e been hurt, even by me. I want to hold it all, together. Witness the carnage, grieve it in the loudest and quietest of ways. Face the irreconcilable. Agree not to annihilate each other, even when we are heartbroken. I want to try and try again. It鈥檚 the place I鈥檝e found the most palpable hope, in the face of all that we are up against. I believe you can find it there too. We can find it together.

De La Cruz, a health educator with Planned Parenthood of Orange and San Bernardino Counties, is here to lead a workshop for between 10 and 20 incarcerated youths, a majority of whom are of color. De La Cruz will guide them in lessons about anatomy and pregnancy, birth control and sexually transmitted infections. He also explores healthy relationships and the pitfalls of toxic masculinity.

But the fun really begins when De La Cruz pulls the condom out of his pocket. As to be expected, all eyes are on him.

鈥淭hey鈥檙e like, 鈥榃ow, are you going to open it?鈥欌€� he says. The answer is yes 鈥� after he asks a few questions.

鈥淚 start off with asking them what the first step is,鈥� De La Cruz says.

To which they might answer: Get the girl or Buy the condom.

Wrong. The first step, he tells them, is consent.

鈥淐onsent is ongoing,鈥� he says. 鈥泪蹿 at any point a person doesn鈥檛 want to have sex, consent is not given and they will stop. That鈥檚 step number one.鈥�

It鈥檚 common in the ensuing discussion for one of the workshop participants to protest that he is too well-endowed for a condom. De La Cruz is ready for this, stretching the condom a couple feet lengthwise or even inserting his hand up to his wrist to assure the youth that, yes, he most likely can wear a condom.

De La Cruz also encourages them not to rip condoms open with their teeth because they might break them, always check the expiration date, avoid putting it on backward (aim for a sombrero, not a beanie), and of course, make sure that once in place, the condom has some air pockets, like a bag of chips.

These conversations, coupled with the condom demonstration, break barriers and help De La Cruz earn trust. As he sees it, participants are thinking, 鈥�This isn鈥檛 just an old man trying to teach me about math or life choices and how to be responsible. But I am teaching them about life and how to be responsible鈥攂ut in their sexual and reproductive health鈥攁nd in a fun way.鈥�

Respecting participants and inviting them to share their thoughts is key, says De La Cruz: 鈥淭hat鈥檚 what makes them eager to have us back.鈥�

From Birth Control to the 鈥淢an Box鈥�

Planned Parenthood鈥檚 Orange and San Bernardino chapter, which is the second largest Planned Parenthood affiliate in the nation, began these workshops in 2013. They鈥檙e now taught at not only Juvenile Hall but at Theo Lacey Facility, a nearby maximum security jail complex.

Workshops cover healthy relationships, gender and sexuality, and sex trafficking. One session is reserved for what Planned Parenthood calls the Male Involvement Program, which explores 鈥渢he man box,鈥� or limitations on behaviors not considered masculine. Other topics include youth rights and resources, such as a program that provides birth control and STI testing to low-income Californians.

The lessons align with the sex-ed curriculum used in California鈥檚 middle and high schools. But many incarcerated young men missed those classroom lessons due to truancy or incarceration. Their lack of knowledge about sexual health puts them at a lifelong disadvantage. It鈥檚 just one more factor contributing to the poorer health outcomes associated with disadvantaged communities.

The chapter expects to reach about 300 incarcerated male teens and young men by the end of June, with plans to expand to facilities in San Bernardino County. 

How did Planned Parenthood, which is normally associated with women鈥檚 health, find its way into the lives of incarcerated young males?

The idea is that by improving the sexual and reproductive health of young men, the workshops also benefit their female partners, explains Faviola Mercado, community education manager at the Orange and San Bernardino chapter of Planned Parenthood.

鈥淲e鈥檙e increasing the likelihood of men being more open to seeking resources and testing for STIs,鈥� Faviola says. 鈥淚t helps their own sexual reproductive health, and we also know that toxic masculinity traits can be harmful to themselves and to women and children.鈥�

By anecdotal measures, the workshops can lead to changes in thinking, such as when participants conclude that an activity they earlier said was strictly feminine鈥攕ay, cooking鈥攊s fine for men to partake in. The workshop鈥檚 interactive format accounts for these mini-breakthroughs.听

鈥淥ur presentation is less of a teacher telling students what to do [and] more of a conversation, with respect between each other,鈥� health educator Neil Reyes explains. 鈥淲e鈥檙e breaking down ideas of masculinity, learning about reproductive health, and helping partners.鈥�

The Challenge of Changing Mindsets

But the effort certainly comes with obstacles. De La Cruz and Reyes are quick to note that a jail, which operates on traditional notions of masculine power, is not the ideal setting to foster emotional expression.

鈥淭he participants are not in a place where empathy is rewarded,鈥� Reyes says. 鈥淪o it鈥檚 not clear how much the message of men being OK to cry or to show emotions is being put to use where they are.鈥�

Some lessons are also met with resistance. For example, participants often push back on less restrictive definitions of gender and sexuality, though De La Cruz and Reyes hope that by answering questions on these subjects, providing explanations, hearing viewpoints, and calling for respect for all, they can build more tolerance.

鈥淎t the end of the day, I say, 鈥業鈥檓 not trying to say what is right or wrong,鈥欌€� De La Cruz says. 鈥淏ut let鈥檚 talk about it. Let鈥檚 be respectful and have this conversation.鈥�

It鈥檚 difficult to gauge the success of prison programs in changing behavior in the long term. Sometimes the only metric is the rate of re-offending鈥攁 鈥渃rude measure,鈥� says Lois Davis, a senior policy researcher at RAND Corporation with expertise in correctional education.

But the Planned Parenthood workshops at Theo Lacey, the adult facility, will be subject to far more nuanced evaluation since the Lacey participants are enrolled in a special initiative called the Transitional-Age Youth, or TAY sector, for short. TAY sector houses men between the ages of 18 and 25 together and provides classes in areas such as securing employment, navigating addiction and mental health, and preparing for re-entry.

TAY administrators will continue to interview participants up to three years after release鈥攖o ascertain, in part, whether participants adhere to sexual health practices鈥攁nd compare findings to a control group. And while it鈥檚 too early for results, the program鈥檚 co-developer and clinical director, Marie Gillespie, is optimistic about the educators鈥� rapport with the young men.

De La Cruz and Reyes 鈥渁re incredibly approachable,鈥� she says. 鈥淭hey鈥檙e able to connect with these young men perhaps at a level other people haven鈥檛 attempted to connect with them on. It鈥檚 not a peer relation but someone you can see in your shoes saying, 鈥楾hese are essential skills.鈥� That鈥檚 going to resonate more with young adult populations.鈥�

For now, Planned Parenthood鈥檚 health educators are continually refining the workshops based on feedback from participants.

One such moment happened during a workshop that Reyes was conducting. A participant said that while he was raised not to talk about his emotions, he would support his son鈥檚 choice to be more expressive.

鈥淚 absolutely remember that moment and thought it was pretty cool,鈥� Reyes says. 鈥淣ow I know that this person got something from the workshops that he could show the next generation if he has his own son.鈥�

Many of us are becoming aware that we are living in an apocalyptic, revelatory moment. We are experiencing extreme contradictions as systems based on the white supremacist imaginary (domination, extraction, and violence) are failing.

If we are able to look at world events through the lens of history stretching over hundreds or thousands of years, we will recognize that we are in a time of great transition鈥攁 time when the world as we know it is ending and a new world is fighting to be born. For some, the falling away of the only systems they鈥檝e known causes such great uncertainty and instability that they would do anything to protect the dying system. The end of the world as we know it causes grave distress and hopelessness. 

But, as these systems crumble, in the cracks, there is an opportunity for us to insert another imaginary. There is an opportunity to create new worlds from the Black Imagination, freed from the capitalistic notion that our creativity can and should be exploited.

In 2019, my studio embarked on a deep-dive study of the Black Imagination, inspired by Robin D.G. Kelley鈥檚 . We curated a list of readings looking to explore whether there were shared principles and methods by which Black- and Afro-descendant people have engaged in bold imagining and freedom dreaming, especially through art, literature, culture, and prefigurative experiments, as part of broader racial justice movements. We found that Black Imagination is an ancestral, Afro-Indigenous way of being based on various cosmologies. Black Imagination centers worldviews that are nonbinary and borderless. It affirms the interconnectedness between our material world, universal consciousness, the past, and our ancestors, the future, and those yet to be born. It is embodied and rhythmic and integrated. It presents many possibilities; it is non-monolithic, affirming multiple ways of being and knowing. It is interdependent and regenerative. It invites us to straddle worlds like or , Orisha of the crossroads; and to be like water, adaptable and abundant.

We access Black Imagination through our ancestral connection and guidance, and we experience it via our dreams, our collective visioning, our intuitions, and our stories. It invites us into the prophetic tradition of envisioning futures in which our descendants are thriving and free. The Black Imagination has been a source of hope and healing at key moments of transition in the history of the Western world, offering a vision of liberation that is expansive and inclusive; an alternative to the destruction brought about by white supremacy.

As an artist, I am especially deeply inspired by the idea of poetic futures outlined in Freedom Dreams. I understand it to refer to the aesthetics of articulating visions of liberatory futures. I am drawn to it because it helped to clarify and affirm for me the role of artists, writers, creatives, and cultural producers in advancing the bold and irresistible freedom dreams held by our movements for liberation at a time when I was embracing art as my purpose after more than 20 years as an organizer. It also contextualizes artists and creatives as integral participants in social movements, right alongside and in relationship to organizers and policymakers and academics. Under the stewardship of artists, radical ideas captivate the hearts and minds of even those who consider themselves nonpoliticized鈥攎aking other possible worlds irresistible and perhaps inevitable. 

These invitations are evident in the and his articulations of a possible life for Black people on other planets. Or Du Bois鈥� The Comet, written in 1920, and the way in which it works out the 鈥渨hat if?鈥� of racial equality in the context of a science-fiction novel. Or the Black Panther comic books and subsequent movies. This is the work of radical and visionary world-building, and it is what I am turning to in order to unleash my imagination and that of others. 

World-building is a literary tool primarily used to shape science fiction, fantasy, and other speculative fictions. It can be a way to support Black folks to articulate their boldest political imaginations by reimagining and reconnecting to an ancestral sense of Spirit and Story: who we are and what we mean to the world. Building these worlds allows us to reimagine and reaffirm our shared values and ways of being together, in ways that center Black love, Black joy, Black rest, Black time. We can reimagine and redesign our neighborhoods and cities as liberated zones and decolonized spaces, and reimagine and transform our systems and structures鈥攆rom governance, to economics, to education鈥攖o reflect our values.

For the past three years my studio, , has been experimenting with using world-building as an art and design framework that invites Black communities to imagine futures based on . We see imagining the future as our sacred responsibility as future ancestors. We invite people to craft story worlds for their future descendants 150 years from now, and then imagine the future history鈥攈ow we journey from the world we know, the now, to the worlds of the future. In so doing, we use world-building to support the development of long-arc strategy, as well as to create works of art and experiences that can inspire. We learn to anticipate ebbs and flows, ups and downs, and pushback, and we prepare to meet those challenges with our hearts planted firmly on a collective North Star. We draw on our desires to cultivate hope, and conjure artifacts and practices from the future that we can begin practicing now in order to make those possible futures real right now. By world-building, we are conjuring hope. Together we are painting vivid pictures of the world and inspiring each other to take bold and transformative action with whatever gifts we have to bring that world into being. As a collage artist, these worlds make their ways subconsciously into my artwork too.

In the three years that we鈥檝e been cultivating this collective practice, we鈥檝e learned a few precious lessons:

1. Imagining the future is mostly about remembering and drawing lessons from the past. It鈥檚 also about giving ourselves space to change the present (or the near future). It allows us to temporarily let go of the feeling of the impossible that can exist in the present, and feel the power of creating conditions that allow more possibilities to unfold in the future. Once we can see these possibilities, regardless of when they exist in our imaginations, we can make them real in the now.

2. We mostly know what new ideas we might try. Most of the ideas and solutions already exist from a technological perspective. In our world-building spaces, people echo some fundamental solutions. We mainly need permission to believe these ideas are possible at the level of our collective will. Expressing our desires together, in an affirming and hope-oriented community, gives us the confidence to mention these ideas in other places, and to experiment with them in our work in all aspects of society.
   
3. We have a chance at saving our species from impending disaster if we can get diverse groups of people involved in imagining shared futures, mitigating the kind of uncertainty that breeds fear and violence. We need to collectively craft different stories and scenarios of the future, and commit to working toward some of those scenarios, instead of accepting the stories of scarcity and competition fed to us by people who do not wish for all of us to thrive.
   
4. Collective imagination is essential. And we must build the power to co-create elements of the futures we have imagined. We have to allow our dreams to infect our realities, and allow them to shape the way we think about what we are building. Sometimes that is going to look like simple day-to-day practices and ways of being that embody our future visions in extremely practical ways. And sometimes it looks like changing the way we approach organizing and movement-building, including who we think our movements include.

As we face the uncertainty of transition, Black Imagination is an abolitionist tradition that offers us an invitation to act with hope. It invites us to remember that the key to our thriving exists in our collective dreaming and in our willingness to imagine the impossible. We remember then, that in times like these we have always advanced bold and inspiring visions by demanding transformative policies, creating innovative and prefigurative structures, and by creating visionary and speculative art and ways of being together. How might you create the space and time necessary to unleash Black Imagination, today?

With his hand over his head, Sandberg ducked between rows of cars and barreled into the safety of his vehicle. He has since tried to block out most of the gay slurs his harassers yelled at him that night.

Sandberg is a senior at Bethel University, a Christian college in Arden Hills, Minnesota, where being gay is a reportable offense. Along with eating disorders, suicidal behavior, and alcohol use, resident assistants must immediately report homosexuality to their hall directors and possibly Student Life deans.

While the university has chosen to engage with other social issues, hosting a #BlackLivesMatter panel discussion and establishing a gender studies minor, conversation about homosexuality and homophobia has been comparably quieter at the institutional level.

“There’s no discussion,” Sandberg said. “It’s either ‘you’re a sinner’ … or ‘let’s get close so we can fix you.’ It’s a really toxic environment.”

In its Covenant for Life Together, a lifestyle agreement that all faculty, staff, and students must sign, Bethel identifies homosexual behavior—along with adultery, idolatry, and dishonesty, among others—as a character quality inconsistent with the Christian lifestyle. However, according to Executive Vice President and Provost Deb Harless, that doesn’t mean Bethel shouldn’t be a safe and welcoming place for LGBT students.

“Bethel University needs to be a place where all people, regardless of sexual orientation, are treated with love and respect,” Harless said.  

Reference to sexual orientation is, however, missing from the Covenant’s anti-discrimination clause. According to Harless, the university does not discriminate based on race, gender, age, or disability, but it does reserve the right to discriminate based on sexual orientation in its hiring practices.

“As a religious institution, we are exempt from the provision of the Minnesota Human Rights Statute regarding employment,” Harless said.

For some LGBT students, Bethel’s stance on homosexuality doesn’t mean they are isolated or unsupported. But for Sandberg, all the policy communicates is that he’s not part of the in-crowd.

“The biggest thing for me is feeling like I’m not allowed to be a Christian because I’m gay,” Sandberg said. “Who are you to tell someone what they are allowed to do or be? That’s between them and God.”

Campus pastor Laurel Bunker heaved a sigh as she sat at the polished wooden table in her office, searching for the right words to describe her opinion on homosexuality at Bethel. She’s faced with a challenging balancing act—trying to uphold the traditional interpretation of Scripture while still showing love to gay students.

“We need to somehow create a level of honesty in talking about it, but that does not mean broad-range understanding or acceptance,” Bunker said. “What it should mean for us is trying to create an atmosphere where young people can wrestle well and with integrity around the things that matter most to them.”

While the university has approved subculture-based organizations like United Cultures of Bethel and Disability Awareness Group, Bethel is the only Minnesota Intercollegiate Athletic Conference school without an official support group for LGBT students.

For gay students like Jonah Venegas, that’s OK. Although he said an on-campus support group would be “an incredible thing to have,” his relationships with students and faculty have been enough to make him feel safe and accepted.

“None of my friends are awkward about it. They’re not trying to skirt around things,” Venegas said. “No one has treated me differently since they’ve found out … if I need to talk, they’ve been super willing to listen.”

According to psychology professor and alumnus Joel Frederickson, animosity toward LGBT students has abated over the last few decades. He pointed to numbers from a 2008 UCLA survey that revealed 10.3 percent of Bethel’s incoming first-year students believed same-sex couples should have the right to legal marital status. By the time those students were seniors, that number had risen to 48.6 percent. It was the largest perspective shift on the entire survey.

While more than half of students surveyed still opposed same-sex marriage, Bunker said far-flung approval isn’t necessary to feel secure in one’s identity. She’s faced plenty of criticism for her role as a female pastor, but she doesn’t doubt God’s purpose for her life.

“I don’t think that every person who wants to live their life as a gay person needs to have the affirmation of the entire church if they feel that somehow this is the life they are called to live,” Bunker said. “I would question that and challenge that, but … we have to be really careful about what we’re presupposing is necessary for people to feel as though they can function.”

Curtiss DeYoung raised his eyebrows at the student sitting across from him, trying to decide how to answer the question that had just been posed by a Bethel sophomore. After a brief pause, he responded with another question.

“Do I think homosexuality is a sin?” DeYoung repeated. “Does that stay in this office?”

His response highlights a deep-seated fear among faculty members to speak publicly about homosexuality — a fear that DeYoung, a former reconciliation studies professor, said still exists on Bethel’s campus.

DeYoung cited the termination of sociology professor Ken Gowdy in 1991 as one of the reasons faculty and staff are reluctant, nearly 25 years later, to engage in conversation about homosexuality. A 1991 edition of The Clarion, Bethel’s student-run paper, reported Gowdy was released after telling a student he wasn’t sure homosexuality was a sin.

Harless said there isn’t a simple, yes-or-no answer to whether employees who express a view counter to the Covenant could be fired.

“Given that faculty sign the Covenant, which includes a statement about the university’s perspective on homosexual behavior, we would not expect a faculty member to advocate for a position that conflicts with the Covenant,” Harless said. “The response to a faculty member who seems to advocate for a position that contradicts the Covenant would be made carefully and thoughtfully.”

Almost a decade after Gowdy was released, an informal group of students called the Straight-Gay Reconcilers decided to offer faculty a small but significant way to support LGBT students by handing out “Safe Place” signs for professors to hang on their doors.

When English professor Joey Horstman posted one of the signs at the entrance of his third-floor Academic Center office, it was gone by the following Tuesday morning. He replaced the sign five or six times. Then he gave up.

As part of their “Safe Place” campaign, the Straight-Gay Reconcilers conducted a survey to gauge student attitudes toward both the signs and the group itself. According to results published in a 2010 edition of The Clarion, 59 percent of 697 students polled believed the signs were unnecessary because the entire campus should be a safe place. Forty-three percent said Straight-Gay Reconcilers should not be allowed club status.

A reported that Bethel did not charter the Straight-Gay Reconcilers or allow them to advertise on campus.

Now, five years later, social psychologist and reconciliation studies professor Christena Cleveland said faculty, staff, and even students are still waiting for administration to tell them it’s OK to openly talk about issues surrounding homosexuality and the church.  

“I think in this community right now there’s so much taboo around [the topic] that it really does take the green light from leadership,” Cleveland said. “From the top—the provost, the president—the people who have the most power here.”

For DeYoung, that green light never came. While he tried to support LGBT students behind closed doors, remaining silent ultimately felt like an act of betrayal.

“As a person working for reconciliation, the school’s inability to have open dialogue and discussion of homosexuality—and its inability to allow students to be who they are—certainly was a contributing factor as I thought about leaving Bethel,” DeYoung said.

He resigned from his position as co-chair of the anthropology, sociology, and reconciliation studies department in January 2014.

Music education major Elizabeth Ciesluk has the word “breathe” tattooed on her left wrist. The black, willowy letters are a constant reminder of her mother’s comfort during her darkest days: Breathe in the good. Breathe out the bad.

It’s Ciesluk’s second year at Bethel, and she almost didn’t come back. Ready to “get out” after her first two semesters, Ciesluk planned to transfer to Gustavus Adolphus—another MIAC college that has a strong music department and a gay-straight alliance group.

“I felt very trapped in a place where I couldn’t express who I was or what I was feeling,” she said. “I was ready to move on to somewhere where I knew that there was a lot more acceptance.”

One Friday afternoon last year, Ciesluk had just plopped into her favorite leather chair in the Clausen Center lounge when a student in the adjacent pod of chairs asked his friend whether sexual orientation was a choice. The second student responded with an unequivocal “Yes.”

Ciesluk’s fists clenched.

“If that were the case, I’d probably be the straightest person on the planet,” she said. “I loved being in the church growing up, I loved learning about Christ and I still had these feelings toward women that I could not control.”

Both Venegas and Sandberg agree that being gay isn’t a choice. Venegas said he almost had “to be slapped in the face” to come to terms with his identity, and Sandberg can’t imagine signing up for the pain he’s experienced.

Because he’s an openly gay student, Sandberg said people have picked up their things and left to avoid sitting next to him. Male students have ignored his greetings because they’re afraid he’s trying to make a pass at them. He feels unwanted.

“If this were a choice, do you think I would choose to be lonely, miserable, and rejected by my family and friends?” Sandberg said. “No. I would not choose to be that way.”

Venegas realized he was gay three years ago, when he was sitting in the basement of Bethlehem Baptist Church in Minneapolis on a Sunday morning. After listening to a friend’s youth group testimony about same-sex attraction, Venegas was finally able to put his feelings into words.

He believed he was called to celibacy until just this year, when he was engulfed by crippling feelings of depression. Hardly able to get out of bed or dress himself, Venegas was terrified by the thought of a lifetime alone.

He started praying for hours every day, writing letters to God, and asking Him to take away his longing for a male partner. When no relief came, Venegas finally began considering the possibility of a God-honoring homosexual relationship.

“I really don’t think the Bible is as clear in regards to this as a lot of people think it is,” Venegas said. “For me, I think it comes down to praying a lot and making relationships with people who identify as LGBT to figure out where God is calling me on this.”

According to DeYoung, who now serves as the executive director of a faith-based nonprofit organization in Chicago, there are theological inconsistencies in the university’s hiring practices. While Bethel hires divorced and remarried faculty and staff, it does not hire people who identify as gay.

Just as dancing and alcohol were once condemned in the Covenant, so too was remarriage considered adultery. But as perspectives have changed, DeYoung said, Bethel “chose grace on these matters.”

“I hope Bethel will also choose to extend its affirmation to LGBT folks,” DeYoung said. “There’s no better time than right now, given the changes happening in the broader society. Too often, the church is behind.”

But, for Bunker, an imminent change in policy is hard to foresee. While she said Bethel should continually strive to live in Christian community with LGBT students, there isn’t much wiggle room when it comes to the university’s stance on homosexual behavior.

“Bethel represents an evangelical community that has made its commitment to biblical fidelity clear in terms of its understanding of the Scriptures,” Bunker said. “Do I think Bethel will change its position on homosexuality? Not anytime soon.”

The moonlight glistened across Lake Valentine as Sandberg walked toward Seminary Hill with another gay student. At half past one in the morning, they had been talking for more than two hours.

“I don’t know what it means to be gay and Christian,” the student told him.

Sandberg nodded. He’s still trying to figure out the answer himself. For now, he draws peace from the indescribable rush of divine love and affirmation he feels every time he questions his identity in Christ.

While scenes like that are common in Sandberg’s life, many Bethel students struggle to reconcile the university’s stance against homosexual behavior with the presence of gay students on campus. In Bunker’s experience, students are often left with the same question.

“When you are a [gay student] and you read that Covenant, why do you still choose to come to a place where you know there might be limited access to … an open community that affirms your lifestyle?” Bunker asked. “What draws you to Bethel?”

For Ciesluk, it was Festival of Christmas. For Venegas, it was a positive postsecondary experience. And for Sandberg, it was absolutely nothing—his parents forced him to attend.

While they have experienced different comfort levels at Bethel, Ciesluk, Venegas, and Sandberg all chose to stay.

“My purpose in being here has been to help those who are gay realize it’s not about who you love, it’s about how you love,” Sandberg said. “People have come up to me and said that I’ve helped them by being myself, and that’s all I can ask for.”

Ciesluk, however, wants more than student-to-student support and quiet conversations with faculty. She wants institutional change, and she has two years left to make it happen. While she hopes to start an official support group for LGBT students next year, Ciesluk said her long-term goal is to help Bethel become more “knowledgeable and accepting of all.”

And Venegas? He just wants all Christians, both gay and straight, to remember to have the conversation about homosexuality in human terms.

“This isn’t an issue. This isn’t a debate. This is life for a lot of people,” he said. “People with real lives and real stories and, a lot of the time, real pain.”

Esther Jones and Sarah Nelson contributed to this report. Graphics by Mary Quint.

In the last 100 years, we got very confused about happiness. This is no small thing. The way we define happiness drives what we do, what we鈥檙e willing to sacrifice, and how we spend our money and our time.

This confusion didn鈥檛 just happen. Advertisers spend billions spreading the illusion that more stuff will bring us happiness. And policy wonks of all political stripes鈥攂ut especially those connected to business interests鈥攕pread the message that economic growth leads to well-being. Both are false promises that have instead been undermining the very conditions that could lead to sustainable happiness.

Sustainable happiness is built on a healthy natural world and a vibrant and fair society. It is a form of happiness that endures, through good and bad times, because it starts with the fundamental requirements and aspirations of being human. You can鈥檛 obtain it with a quick fix; sustainable happiness cannot be achieved at the expense of others.

The good news is that sustainable happiness is achievable, it could be available to everyone, and it doesn鈥檛 have to cost the planet. It begins by assuring that everyone can obtain a basic level of material security. But beyond that, more stuff isn鈥檛 the key to happiness.

It turns out that we don鈥檛 need to use up and wear out the planet in a mad rush to produce the stuff that is supposed to make us happy. We don鈥檛 need people working in sweatshop conditions to produce cheap stuff to feed an endless appetite for possessions. We don鈥檛 even need economic growth, although some types of growth do help.

The research shows that sustainable happiness comes from other sources. We need loving relationships, thriving natural and human communities, opportunities for meaningful work, and a few simple practices, like gratitude. With that definition of sustainable happiness, we really can have it all.

A short history of American-style happiness

Consumption has not always been king in the United States. It became a national preoccupation beginning in the 1920s when business leaders began worrying that Americans were satiated, that they had all the appliances and consumer goods they wanted. Executives and pro-business politicians thought the economy would stall if people chose to spend time enjoying life rather than working more and buying more.

So the advertising industry joined forces with Freudian psychologists to channel our desires鈥攖o link the universal wish for status, love, and self-esteem with the new 鈥淕ospel of Consumerism.鈥�

鈥淲ants are almost insatiable,鈥� claimed President Herbert Hoover鈥檚 report on the economy, published just months before the 1929 crash. 鈥淥ne want satisfied makes way for another鈥�. We have a boundless field before us; there are new wants that will make way endlessly for newer wants, as fast as they are satisfied鈥� by advertising and other promotional devices, by scientific fact finding, by a carefully predeveloped consumption, a measurable pull on production has been created鈥� it would seem that we can go on with increasing activity.鈥�

The modern advertising industry systematically set out to redefine our beliefs about happiness. Freudian psychoanalyst Ernest Dichter is one of those who joined forces with the advertising industry. 鈥淭o some extent,鈥� he said, 鈥渢he needs and wants of people have to be continuously stirred up.鈥�

Their strategy works. Today, an iPad, the right vacation, or the latest sneakers have become prerequisites for getting respect. Certain brands of beer are synonymous with friendship and a sense of community. An oversized house points to status and proof of your earnings and ability to provide for a family. These are all, of course, ideas created by advertisers whose clients profit when we buy more than we need.

Advertisers spend billions spreading the illusion that more stuff will bring us happiness.

But buying all this stuff has real consequences. Houses today are, on average, twice as large per person as they were 40 years ago. The burden of debt for those extra rooms and deluxe finishes lasts for decades. Some get addicted to the buyer鈥檚 high that follows a big purchase, but the initial exuberance spikes and disappears quickly. The debt, the extra work hours required to pay it off, and the resulting time away from friends and family go on and on.

Exhausted by long hours working and commuting, people begin to wonder what happened to real happiness. Advertisers are there with the answer: You just need to spend still more on plastic surgery, antidepressants, or a new car. The average child in the United States sees between 50 and 70 ads a day on television; the average adult sees 60 minutes of ads and promotions a day.

For the working poor, those on limited incomes, and the unemployed, much of the stuff that advertisers claim will bring happiness is out of reach, making the false promises a cruel joke. For all income levels, but especially for the poor, advertising becomes a relentless reminder that one is falling short of what others have鈥攁nd of the good life.

鈥淲ho tells the stories of a culture really governs human behavior,鈥� said media scholar George Gerbner. 鈥淚t used to be the parent, the school, the church, the community. Now it鈥檚 a handful of global conglomerates that have nothing to tell, but a great deal to sell.鈥�

The conversation about sources of fulfillment and joy has been colonized by the advertisers that manufacture the mindset of the consumer culture.

Paying the price for cheap stuff

The workers who make and distribute our stuff are among those who pay the price for our consumer lifestyle. When people lack money but are told that more stuff is essential to their happiness, low prices become paramount. Local businesses are driven into bankruptcy by big-box stores that can slash prices by paying rock-bottom wages.

Production workers find themselves unwilling participants in a race to the bottom for the lowest wage. Employers pick up and relocate if wages and safety standards are lower somewhere else or if workers begin organizing a union.

The nonhuman life of the planet suffers, too, from the colossal ecological burden of producing all our stuff. Human activity is causing species to go extinct at 1,000 times the rate that would otherwise occur in nature, according to a recent study published in Science. Industrial chemicals turn up in the bodies of sea mammals in the Arctic鈥攁nd in our own bodies. A giant patch of plastic garbage circulates in the Pacific Ocean, poisoning wildlife up and down the food chain. Most troubling of all are the effects of burning massive quantities of fossil fuels and clear-cutting and burning forests. The carbon saturating the atmosphere is turning the ocean acidic and overheating the planet. The disruption of the climate threatens our coastlines, food supplies, and sources of fresh water, and supercharges wildfires and massive storms.

Growth no longer delivers happiness

More consumption was supposed to bring happiness to us as individuals, and, likewise, economic growth was supposed to bring well-being to society as a whole.

The postwar period was considered an economic success story, and especially in the ’60s and ’70s, it was a time when many were lifted out of poverty and the gap between rich and poor was much smaller than it is today. The growth of the economy as measured by Gross Domestic Product (GDP) rose steadily.

We don鈥檛 need people working in sweatshop conditions to produce cheap stuff to feed an endless appetite for possessions.

But the GDP is an untrustworthy measure. It gauges economic activity, whether or not that activity means improvements. Dig a strip mine and sell the metals, minerals, or coal, and the GDP will thank you鈥攅ven if you pollute the drinking water for thousands. Raise fresh food in your garden, share it with friends and with the local homeless shelter, and stay healthy and happy, and the GDP doesn鈥檛 budge.

The Genuine Progress Indicator (GPI), on the other hand, measures overall well-being; it subtracts out harmful things like crime, illness, farmland loss, and declining water quality, and adds in contributions to the economy that the GDP doesn鈥檛 count, like unpaid work in the home and volunteering in the community.

Until 1979, GDP and GPI both increased in the United States, more or less in tandem. But after 1979, something different happened. The GDP continued growing, while the GPI stalled. More and more of our time and resources were invested in economic growth, but it was no longer delivering happiness, especially for those still stuck in poverty.

Why did the size of the economy continue to grow while well-being stagnated?

The culprits are 鈥渁 rising of income inequality combined with environmental and social costs rising faster than consumption-related benefits,鈥� says Ida Kubiszewski and colleagues in a paper published in Ecological Economics.

In other words, we鈥檙e not getting much happiness for all the time, money, and natural resources we鈥檙e using鈥攁nd the benefits are going mostly to those at the top.

What changed? Among other things, free trade agreements and pro-corporate governments now make it possible for transnational corporations to outsource production to the lowest-wage regions of the world with the fewest regulations guarding worker and environmental safety. That strategy keeps prices down. But it makes it easy for corporations to slash good jobs and exploit workers here and internationally. The poverty wages and abuse of farmworkers in the United States, the numerous factory fires and the collapse of the Rana Plaza building in Bangladesh, the suicides at the Chinese factories that make Apple products, and the blood diamonds in the Congo are just some examples of the high price paid by those who produce our stuff.

Productivity has risen throughout the postwar era, especially with the deployment of computers and robotics. More is now produced with an hour of worker time than ever. The increased income from that productivity could have been shared with workers in the form of higher pay or fewer hours for the same pay. Or the profits could have been taxed to fund higher education, infrastructure upgrades, a high-speed transportation system, a transition to a green economy, or any number of other things that would increase sustainable happiness. Instead, companies used the increased productivity to lay off workers, offer huge compensation packages to executives, purchase other companies, and pay out high returns to wealthy stockholders. And they spent billions on lobbyists and campaign contributions to win favorable laws, reduced taxes and regulations, and sweetheart trade deals. Organized labor no longer has enough clout to negotiate for a share of the increased income; wages have stagnated since the ’70s, while the income and assets of the top 1 percent鈥攁nd especially the top 0.1 percent鈥攈ave skyrocketed.

A diminished quality of life

The dominance of this profit-driven economy is undermining our quality of life.

To get by in an age of stagnant wages and government indifference, Americans work longer and longer hours. Those at the bottom of the income ladder, especially single parents, often work two or three jobs to bring in enough to get by, and many live in poverty even while working full time. With long hours (plus long commutes), who has time to be happy?

This form of corporate-driven consumerism increases inequality and undermines family life, and it鈥檚 gobbling up the natural resources of our planet. Mountaintops are blown off, forests converted to tar-sands open-pit mines, and farmland converted into fracking drill sites and strip malls. The planet has limits鈥攁 reality overlooked by those who preach unending economic growth. We now have industrial chemicals in our water supply, Dust Bowl-style droughts, acidifying oceans, dying bee colonies, melting polar ice, and extreme hurricanes and fire storms. There鈥檚 a saying: 鈥泪蹿 mama ain鈥檛 happy, ain鈥檛 nobody happy.鈥� Mother Earth is not happy.

Wages have stagnated since the ’70s, while the income and assets of the top 1 percent鈥攁nd especially the top 0.1 percent鈥攈ave skyrocketed.

Many people are concerned about these issues, of course. But ordinary people don鈥檛 have the resources to get the attention of elected officials, who must raise millions of dollars to run national campaigns. A recent study by two prominent academics, slated for publication in the Fall 2014 Perspectives in Politics, confirms that the United States has become an oligarchy. The views of ordinary people and their advocacy groups have virtually no effect on policy, the study found. Yet economic elites and organizations representing business interests have 鈥渟ubstantial independent impacts鈥� on government policy.

This is how inequality undermines sustainable happiness. The promise that more stuff brings happiness turns out to be a false promise. Likewise, the claim that the rising tide of economic growth 鈥渓ifts all boats鈥� is also false.

So where can we find sustainable happiness now?

If economic growth and consumerism aren鈥檛 a recipe for sustainable happiness, then how do we get it?

Sustainable happiness is a form of well-being that goes deep鈥攊t鈥檚 not a fleeting sensation of pleasure or a temporary ego boost. Instead, it is enduring because it taps into our most authentic aspirations and involves building relationships and practices that support us through good times and bad.

Sustainable happiness is built on a mutually supportive community. It grows out of the recognition that our well-being is linked to that of our neighbors. When we know that we can count on others in difficult times, that there is a place for everyone, and that we can make a meaningful contribution and be recognized for it, we have the foundations of sustainable happiness.

And sustainable happiness grows out of a healthy living Earth. At a very basic level, it comes from recognizing that each drink of water, each breath of air, the food that grows out of the soil or comes from the waters鈥攁ll is possible because of the living ecosystems of the planet. Sustainable happiness goes deeper, though, to a celebration of the natural world even when it is not offering us a direct benefit.

The good news is that sustainable happiness is compatible with a healthy environment, an equitable world, and our own fulfillment. And it is contagious鈥攖he things that create well-being for one person tend to be good for others and for all life.

Sustainable happiness is possible鈥攂ut much depends on the choices we make individually and as a society. Here are some places to start: 1) Stop the causes of trauma and support healing, 2) Build economic and social equity, 3) Value the gifts we each bring, 4) Protect the integrity of the natural world, and 5) Develop practices that support our own well-being.

1. Stop the trauma

Like the common sense rule contained in the Hippocratic Oath, we could start by doing no harm.

Life inevitably brings some kinds of hurt: A relationship breaks up, a loved one dies, or a job fails to materialize. With support from friends and family, we recover and go on.

Yet there are types of trauma that can be debilitating for a lifetime and even across generations. And many are preventable.

Veterans suffer high rates of post-traumatic stress disorder (PTSD). According to the Department of Veterans Affairs, 30 percent of those treated in VA hospitals after returning from deployment in Afghanistan or Iraq have PTSD. Their children also suffer and are more likely to be anxious or depressed.

Sustainable happiness goes deeper, though, to a celebration of the natural world even when it is not offering us a direct benefit.

Sexual violence is another way large numbers of people are traumatized. An estimated one in five women will be raped over the course of her lifetime, and a third of rape survivors will experience PTSD. Survivors are also three times as likely to have an episode of serious depression.

Nearly 700,000 children are subjected to sexual and physical abuse each year in the United States, according to the U.S. Department of Health and Human Services. Children suffer disproportionately from poverty, which also causes lasting trauma.

And there are the intersecting traumas caused by generations of exclusion, economic dislocation, and violence directed at people of color, who experience higher rates of PTSD as a result of ongoing racism, according to research cited by Dr. Monica Williams in Psychology Today.

Among the most important ways to create a happier world is to end the wars, abuse, and exclusion that are sources of continued trauma, and to support the healing of survivors.

2. Create equity

Stress can be healthy, if it鈥檚 the right kind. Short-term stress actually increases memory and mental function. But chronic stress鈥攅specially stress caused by events over which we have little control鈥攊ncreases the risk of heart disease and the likelihood of death. The Whitehall Studies鈥攖he famous 20th century investigations into the causes of death and disease among British civil servants鈥攕howed that low-status workers had a death rate three times higher than those in the upper reaches of the hierarchy, even when controlling for other class-based stress factors. Moreover, the damage caused by inequality extends beyond the workplace. Epidemiologist Richard Wilkinson has demonstrated that those living in unequal societies have many times higher rates of mental illness, homicide, and teen pregnancy.

So if we want healthier and happier lives, we need a more equitable society鈥攆airer in both an economic sense and in terms of the empowerment we all have to determine our own lives.

3. Value everyone鈥檚 gifts

It may be counterintuitive, but sustainable happiness comes from what we give, not what we take or even what we have. People who find their unique gifts and are able to offer them to others are often happiest.

Cameron Anderson, a professor at the Haas School of Business at the University of California, Berkeley, published a study in Psychology Science that shows winning the respect and admiration of our peers matters more than having stuff. 鈥淵ou don鈥檛 have to be rich to be happy, but instead be a valuable contributing member to your groups,鈥� says Anderson. 鈥淲hat makes a person high in status in a group is being engaged, generous with others, and making self sacrifices for the greater good.鈥�

Likewise, research cited in 猫咪社区! Magazine by Stacey Kennelly shows that our happiness increases when we have the respect of our peers, but not necessarily when we have a higher income or more wealth.

College students who are politically engaged are happier, according to research by professor Tim Kasser. 鈥淧olitical activism scores were associated with feeling more pleasant emotions, reporting greater life satisfaction, and having more experiences of freedom, competence, and connection to others,鈥� he says in a 猫咪社区! Magazine article, 鈥淢aking a Difference Makes You Happy.鈥�

4. Protect the integrity of the natural world

The natural world doesn鈥檛 just bring us happiness; it is what makes life possible, and protecting its integrity contributes to sustainable happiness.

Getting out into nature improves our sense of well-being and is especially important for children. Benefits include reduced stress, improved health, more creativity, and better concentration, says Amy Novotney in the Monitor on Psychology.

The illusion that humans are separate and apart from the living Earth is finally giving way to an understanding that our fate is tied to the fate of the planet on which we all depend. Our work to protect and restore the planet鈥檚 ecosystems will mean clean water, healthy foods, a stable climate, and a better shot at sustainable happiness for generations to come.

5. Develop practices that support our own well-being

An egalitarian society that protects the natural world; minimizes war, racism, and abuse; and welcomes the expression of each person鈥檚 unique gift provides the foundation for sustainable happiness. But we don鈥檛 have to wait for the world to change. There are things we can do at home, too, that boost our own sustainable happiness.

We can exercise, a better cure than prescription drugs for much of what ails us. A sedentary life is as dangerous to health as smoking, according to studies cited by the American College of Sports Medicine. Regular moderate exercise not only reduces the risk of heart disease, diabetes, and stroke; it also makes us happier, often controlling depression as effectively as prescription antidepressants. It鈥檚 much cheaper, and all of the side effects are good.

Sustainable happiness goes deeper, though, to a celebration of the natural world even when it is not offering us a direct benefit.

We can also develop a practice of gratitude and learn to be mindful.

Some of the happiest people are those who have survived great illnesses or other major life challenges and have become conscious of the choices they make about their finite lives. There鈥檚 something about facing the possible end of life that brings into focus the precious choice we have about how to spend our remaining days.

鈥淓verything can be taken from a man but one thing: the last of human freedoms鈥攖o choose one鈥檚 attitude in any given set of circumstances, to choose one鈥檚 own way,鈥� Viktor E. Frankl wrote.

A global happiness reset

As endless growth and bottomless consumption lose their luster as aims for our lives, many people are seeking out better ways to achieve happiness. New approaches are beginning to take hold around the world.

Buen vivir

Out of the indigenous regions of South America comes the idea of buen vivir (the good life). In this way of thinking, well-being does not just come from the individual pursuit of happiness. It comes from being part of a vibrant world that includes both human and natural communities. Instead of serving the economy, the economy exists to serve us. We are here to live well with our families, and it is in relationships of respect and reciprocity with neighbors and with our ecological neighborhood that we will find happiness.

This, of course, is a radical reversal of the economic growth aims of society as promoted by both liberal and conservative political leaders. Instead of seeing nature and human labor as an input into a production machine we call the economy, this perspective aims to foster an ethic of stewardship, mindfulness of the interests of descendants seven generations on, gratitude for what we have鈥攁long with a sense of enoughness鈥攁nd the acknowledgement of the rights of all life.

Buen vivir has now been embedded in the constitutions of Bolivia and Ecuador. This framework has inspired a grassroots approach to the climate crisis and has become the foundation of international discussions, especially in Latin America.

Bhutan鈥檚 gross national happiness

In 1972, soon after ascending to the position of the Fourth Dragon King of Bhutan, the young Jigme Singye Wangchuck declared that he was more interested in gross national happiness than in gross domestic product. This statement launched studies and assessment surveys, based on Bhutan鈥檚 unique culture and values, so that happiness could be used as a yardstick for policymaking in this small Asian nation. Gross national happiness as defined by Bhutan includes psychological well-being, health, education, time use, cultural diversity and resilience, good governance, community vitality, ecological diversity and resilience, and living standards.

Focusing on the well-being of the people guided Bhutan as it followed its own path, rather than adhering to the interests of global economic forces. Bhutan decided not to join the World Trade Organization, for example, when it concluded that such a move would undermine happiness and well-being.

鈥泪蹿 we look at things holistically, based on health, community connection, arts and culture, the environment, we will govern the country differently.鈥�

鈥泪蹿 Bhutan joins the WTO, it surrenders, by very definition, the right to determine who participates in defining and achieving the happiness of the Bhutanese whole to external forces. In other words, Bhutan surrenders to market forces and to the powers that are dominant in the market its own sovereignty,鈥� said Stanford history professor Mark Mancall.

Bhutan鈥檚 idea that happiness, not growth, should be the measure of progress is spreading. The United Nations General Assembly adopted a Bhutan-sponsored resolution in July 2011 that calls on other nations to make happiness and well-being a central feature of their development work, and to develop indicators to measure the well-being of their own people.

The happiness movement in the United States

In the United States, the states of Maryland and Vermont are using the Genuine Progress Indicator to measure happiness. They are factoring in the benefits of volunteer time, housework, educational achievements, and functional highways and streets while subtracting things like crime and the depletion of nonrenewable energy sources. By measuring these and other factors, a more complete picture emerges of real well-being.

鈥泪蹿 we look at things holistically, based on health, community connection, arts and culture, the environment, we will govern the country differently,鈥� John deGraaf, a co-founder of the Happiness Alliance, told me. 鈥淲e will understand that success comes more in societies that are egalitarian, that have great time balance鈥攕hort hours and shared work, strong social safety nets so people feel secure. We鈥檒l have greater confidence in government and greater trust in each other.鈥�

Maybe happiness sounds like a frivolous endeavor for us as individuals, and especially for governments and the United Nations, to pursue. But consider Thomas Jefferson鈥檚 insistence on including the 鈥減ursuit of happiness,鈥� rather than 鈥減roperty,鈥� along with life and liberty in the Declaration of Independence. Jefferson was deeply influenced by the Greek notion of eudaimonia, which refers not to a fleeting pleasure but to the essentials of what it means to be human鈥攊n other words, to human dignity.

In this sense, sustainable happiness is not frivolous at all. There aren鈥檛 enough resources in the world for all of us to live a consumer lifestyle. But by choosing wisely, we can have a world in which each of us can live in dignity.

Those who are affluent can gain happiness by eschewing excess consumption, de-cluttering, practicing gratitude, relishing good times with loved ones, and protecting the natural environment.

Much of the stuff that advertisers claim will bring happiness is out of reach, making the false promises a cruel joke.

For those lacking the means to provide for themselves and their families, an increase in access to resources can result in real improvements in well-being.

As a whole, we stand to gain a lot. A more equitable world fosters trust, increasing our capacity to work together to solve the big problems of our time. It means a world with less crime, less disease, less corruption, and less waste. And it鈥檚 a world in which we make the best possible use of the natural resources we extract from the Earth by making sure that鈥攖o loosely paraphrase Gandhi鈥攐ur natural wealth goes to meet needs, not greed.

Ways of life that focus more on happiness and less on economic growth leave time for family, community, and the development of the many dimensions of our lives that we know bring real happiness.

One more thing: In a time of increasing disruptions related to a changing climate and economic dislocation, our challenge will be to create the conditions that encourage us to turn to each other in hard times, not turn on each other. We are far more likely to achieve that in a more equitable world, where we are mindful of the many blessings we have and skilled at discovering sources of happiness that don鈥檛 cost the planet, but are abundant and free.

According to a recent study, more than 70 percent of 18- to 34-year-old men visit porn sites in a typical month.

I didn’t know it then, but porn had become an addiction. And, like most addictions, I was ashamed to talk about it or even admit it was a problem.

“Everybody watches porn,” I remember hearing. It seemed so pervasive and culturally accepted that having an actual conversation about it was a total non-starter. So I kept it to myself.

I thought I had my habit under control. I thought I could quit porn whenever I felt like it. I even tried to quit a few times and then rationalized my eventual return to the addiction.

I didn’t realize how much watching porn had manipulated my mind, warping my sexuality, numbing my feelings, and affecting my relationships with women. And I was not alone.

It got to a point where I felt physically ill watching the videos, and yet I kept watching.

According to , more than 70 percent of 18- to 34-year-old men visit porn sites in a typical month. And it’s not just guys watching sex online. It is estimated that 1 in 3 porn users today are . Now, I want to be clear that porn use extends across all gender expressions, but for the purpose of this post I am sharing my experience with porn from the perspective of a heterosexual white man with more or less traditionally masculine ways of acting and speaking.

Let me also state clearly that I don’t think all porn is bad. I’ve seen some great videos of couples engaging in intimate and respectful sexual encounters—of course, these are usually found only on or in the category on mainstream porn sites called “female friendly” (It’s interesting to note what the category name “female friendly” implies about all the other categories). But I’m not here to judge anyone else for what they choose to watch. I’m simply sharing the impacts that porn has had on my life and what has changed for me since I’ve stopped using it.

To me, what is worrying about porn is not how many people use it, but how many people have found themselves addicted to it.

Impacts of porn

One of the best of the many conducted on the impacts of porn on men and women in society is a by psychotherapist Gary R. Brooks. It documents many effects of porn, including three that strongly resonated with my experience:

1. Violence against women

This includes an obsession with looking at women rather than interacting with them (voyeurism), an attitude in which women are viewed as objects of men’s sexual desire, and the trivialization of rape and widespread acceptance of rape culture—fueled by fake depictions of women in porn videos often pretending to desire violent and abusive sexual acts. (Numerous studies have documented links between porn viewership and increased instances of sexism and violence toward women. Here is one s.)

2. Numbness and disembodiment

This can include , inability to orgasm when not watching porn, detachment from your physical body, emotional unavailability and numbness, lack of focus and patience, poor memory, and general lack of interest in reality. Furthermore, to boredom with their sexual partners, higher levels of sexual promiscuity, adultery, divorce, sexism, rape, abuse, and suicide.

3. Fear of intimacy

Watching porn contributes to many men’s inability to relate to women in an honest and intimate way despite a longing to feel loved and connected. This is because pornography exalts our sexual needs over our need for sensuality and intimacy; some men develop a preoccupation with sexual fantasy that can powerfully impede their .

Why I quit watching

I always felt like a hypocrite watching porn. Here I was, a man who is striving to be an ally to women, perpetuating the very culture of violence and misogyny that I was ostensibly trying to fight. The reality was that most of the videos I found online had titles that included words like “bitch” or “slut” and showcased controlling behaviors that were rooted in a culture of subjugation and objectification, where women are nothing more than sexual bodies to be exploited and dominated by men.

My year without porn has helped me reconnect to my body and begin to develop healthy emotional expression.

When I am deeply honest, I have to admit I was both intrigued and disgusted by these images. By that time, my mind had been trained to find aggressive, misogynistic, and even non-consensual sex arousing. I found that this response was just one of many symptoms of a larger system of patriarchal oppression affecting my life. It is difficult for me to admit, but it got to a point where I felt physically ill watching the videos, and yet I kept watching. That’s when I realized I was dealing with an addiction.

What I’ve discovered is that there is a whole spectrum of addiction, from a feeling of compulsion on one end to an intense dependency on the other. My porn addiction seems to have been pretty mild, since I did not experience any serious withdrawal effects. For some people with more serious addictions, may be needed.

Last February, after a decade of use, I decided to quit watching porn for one year, both for the challenge of seeing if I could and for the chance to see how life might be different.

Today marks my one-year anniversary of life without porn. It hasn’t been easy, particularly as a single guy, but what I’ve learned about myself through this experience has transformed my life forever.

Life after porn

Here are some of the things I’ve gained during my year without porn:

1. Integrity and love

Since dropping porn, I have restored a sense of personal integrity that had been missing from my life. Regaining this integrity has allowed me to move through a lot of my shame and find myself in a new space of deepening love for myself and others. I’ve also noticed that I am often able to stay more present with women now, rather than projecting fantasies onto them. This was hard to do when my mind was cluttered with images from porn videos. This newfound presence has also allowed me to begin to dismantle some of the subconscious sexism within me, helping me work toward becoming a better ally to the women in my life.

2. Embodiment and emotional expression

My year without porn has helped me reconnect to my body and begin to develop healthy emotional expression. I’ve begun to expand my sense of self by learning how to move out of my head and into my heart. After many long years void of emotional expression, I’ve reconnected to my tears. This release of suppressed emotional tension has unlocked a lot of joy in my life. All of this has helped me begin to shift my sexuality from physical detachment to true intimacy, presence, and embodiment.

3. Creativity and passion

Over the past year, I’ve started feeling more comfortable in my own skin. I’ve become much more willing to let go of control, to improvise, and to accept people’s differences. I trust myself more than I ever have and, as a result, my sense of self-confidence has soared. I wake up every morning grateful to be alive, clear about my life’s purpose, and passionate about the work I am doing in the world. My life today has a depth of authenticity and power that I never felt before.

Stepping up

Last week, many folks in my community and around the world engaged in conversations about ending the sexual violence and abuse that directly affect over a billion women across the globe today. Of course, women and girls are not the only ones hurt by sexual violence. I’ve heard stories from a lot of guys who are also affected by cycles of violence and abuse that got passed on through generations. It is important, however, for me to recognize that .

It’s time we begin transforming our pain into love by opening our hearts and reconnecting with our bodies.

As the Franciscan priest and compassion advocate has written, “pain that is not transformed is transmitted.” And this pain is often transmitted in the form of violence. So how do we, as men, break this cycle? It’s clear to me that we will never transform our pain within a culture of silence. It is only by bringing our shadows to the light that we can diffuse the power they hold over us.

Over the past several years, I have heard a lot about inequality, sexism, and violence against women. I believe it is vital for porn to be a part of that conversation, particularly amongst men.

If we are serious about ending violence against women, then we must be willing to have open and honest conversations about how porn is affecting our lives.

I am committed to a world of love, respect, and safety for all people. I’m sick of all the shame, numbness, and secrecy surrounding porn and addiction. I’m saddened to hear about all the guilt people feel (from churches, parents, teachers, etc.) simply for wanting to express their sexuality in healthy and authentic ways. And I’m outraged by all of the violence, degradation, and exploitation of women. Enough is enough!

The only way we can transform the culture of violence is to make it transparent by speaking the truth about the ways that we consciously and subconsciously contribute to it. A culture of love and healing can only be built on a foundation of radical honesty and integrity, built from the ground up in our own lives.

Will you stand with me? It’s time we start talking about the things we’ve been afraid to talk about, knowing we’re not alone. It’s time we begin transforming our pain into love by opening our hearts and reconnecting with our bodies. It’s time we, as men, step into a more mature masculinity: one that recognizes the sacredness of the human body, one that creates intimacy and cultivates authentic connection and healing, one that is unafraid to love and be loved.

This article originally appeared on 

Additional Resources:

1. The Great Porn Experiment:

2. Why I Stopped Watching Porn:

3. Violence Against Women: It’s a Men’s Issue:

4. Make Love Not Porn:

5. Sexual Recovery:

6. The Good Men Project:

7. ManKind Project:

Disclaimer: The following themes might be difficult to read, especially for those who have been harmed by purity culture. Take good care of yourself while reading.

Vaginismus is a condition we don鈥檛 talk about enough. Although common, it is often underdiagnosed, . Since 2021, Bailey Krawczyk has publicly spoken about her experience with vaginismus. As a teenager, she wasn鈥檛 able to use tampons without feeling intense pain. Because of that, she worried whether penetrative sex would be more painful than pleasurable for her. In interviews, she shares that her condition originated from having a conservative Christian background. that 鈥渁s a child, [Krawczyk] associated sex with sin and subconsciously feared penetration.鈥�

There鈥檝e been cases and that connect religious trauma with the shame or discomfort of receiving any sort of pleasure, which can lead to sexual pain like vaginismus. Conservative Christians equate and lustful behavior, and therefore condemn such pursuits. 

Madison Natarajan and Kerrie G. Wilkins-Yel as 鈥渁 phenomenon promulgated by evangelical Christianity that teaches strict adherence to sexual abstinence prior to heterosexual marriage.鈥� Christians typically justify the purity culture movement by retracing its origins back to the 鈥�90s, when to the AIDS endemic and a spike in teenage pregnancy by doubling down on abstinence as the sensible and, more importantly, biblical solution. What鈥檚 left unsaid is Christianity鈥檚 participation in and perpetuation of patriarchy, racist sexism, misogyny, and queer- and transphobia. The volume of stories demonstrating the trauma and negative effects of evangelical purity culture is overwhelming. 

In Islam, the prudishness around sex and sexuality was said to be a manifestation of a 鈥渃olonial hangover,鈥� . Abbas looked back at the Islamic perspective on sex and sexuality in the 1400s and found a regional receptivity on the matter. Although the Quran shares a number of prohibitions with Christianity, such as that against premarital sex, Abbas notes that 鈥渄ozens of hadith offer definitive, often honest and comprehensive, prophetic traditions on sex and sexuality.鈥� 

For some Muslims, this openness to the subject of sex got distorted, says Abbas, when Western Christendom inflicted the notion of purity and the phenomenon of shame onto a number of Muslim communities when it came to sex and sexual equality, resulting in the aforementioned prudishness and the treating of sex as taboo. As a result, 鈥渟everal attempts to write about sex and intimacy from the Islamic point of view have failed in the face of censorship and criticism,鈥� according to Abbas. We see an example of this in against a medical doctor鈥檚 attempt to teach sex education in Pakistan.

Countless members and ex-members of faith communities automatically associate desire and pleasure with shame, guilt, and harmful punishment because of purity culture, and have found it difficult, if not nearly impossible, to receive pleasure freely. How then can we heal and transform our relationship with pleasure from this religious trauma?

The Intersection of Spiritual Healing and Sexual Healing

I was a Protestant church kid when I was young. Back then, I always thought that God had his eye on me whenever I wondered about sex, felt 鈥渟exual urges,鈥� or got curious about my body parts. In those moments, I felt like I was under surveillance by not just the church, but by a higher power who, I was told, loved me so much that he sacrificed everything鈥攊ncluding his one and only son鈥攋ust to be with someone as sinful and insignificant as me. Whew. I chuckle sarcastically looking back at it now, and, at the same time, I feel compassion for younger Gabes, who was constantly under pressure to appease this God whom she knew would save her from eternal damnation. The pressure turned into self-punishment over time, because I thought I kept failing God for being curious about my body and desiring to feel good in it. 

What鈥檚 crucial about the pressure and the eventual trauma from purity culture is that it rests on the intersection of spirituality and sexuality. It has to do with both the rules and restrictions enforcing purity and chastity and the idea of a divine being who sets these rules and restrictions. When we fail to adhere to such rules, we are not only rejected by our church community (which, for some, is the only community they have), but also by God. Because the trauma is rooted in this intersection of spirituality and sexuality, we must consider healing our sexual and spiritual wounds in tandem.

One approach is finding a type of spirituality or spiritual community that celebrates embodiment and pleasure as expressions of love and collective flourishing. Some of us need transcendence to make meaning in our lives, which might be found in astrology, the mystic arts, the spiritualities practiced in one鈥檚 ancestral lineage (if accessible), or even a reverence toward the . 

This can help change our internal stories about pleasure through community and embodiment, welcoming new experiences and conversations on pleasure and intimacy outside of contempt, shame, divine punishment, and ideas of immorality and even evil. 

Christian churches can also be a part of this healing journey, because not all of them uphold puritanical rules and attitudes toward sex and sexuality. about how the Black church has been a 鈥渂edrock鈥� for many Black gay and bisexual men. In navigating self-love, , Morrison shares that 鈥渢here are a lot of different ways to Christ 鈥� and to Church.鈥� Morrison believes that God created him the way he is as a Black gay man. He is who he is because God designed him that way, and to resist this design is to question God.

Lyvonne Briggs hosts a podcast and teaches that centers healing and pleasure from a faith perspective; she also wrote a book called that touches further on healing the body. Matthias Roberts is a therapist and theologian who writes on healing from sexual shame in his book . Even with its horrific history of hegemony and dogmatic violence, Christianity still inspires hope via a number of life-affirming and sex-positive . 

Inch by Inch

Everyone will have a different journey of healing from purity culture. It鈥檚 important to go at your own pace and to be mindful of internalized expectations of what sex needs to be.

Coming from purity culture myself, I developed . Similar to Krawczyk, vaginal dilators and psychotherapy have helped me in my healing journey, as well as the privilege of having an empowering gynecologist who normalizes the condition for me. She once told me that there are many people who have vaginismus, some of whom have intercourse with their partner only when they decide to have children.

That I have this condition might come as a shock for some people who know me. Many perceive me to be a very sensual person鈥攁nd yes, this is absolutely true. I can still be sensual, even without penis-centered sex. I have a lot of sex, but not a lot of penetrative sex. 

In my personal life, I am fortunate to have a partner with whom I not only feel emotionally and physically feel safe, but who also shares an understanding that sex doesn鈥檛 have to be penetrative all the time. Sex can be satisfying without complying with society鈥檚 expectations of it鈥攅xpectations that resemble that of the church鈥檚: Male pleasure is the only priority; orgasms are viewed as the goal of any sexual encounter; procreation is the main purpose of sex.

Inch by inch, we unlearn these expectations, and then relearn that pleasure is also not always found in sex, but in various expressions of love and intimacy. As said in my previous essay, we can feel alive and erotic even outside of sexual intercourse.

Get to Know Your Politicized Body

It is one thing to get to know our bodies in the context of faith and sex, but it is another thing to understand them from a sociopolitical lens.

The post-purity culture movement and the promotion of sexual agency and gender rights , leaving Black women and women of color by the wayside. Natarajan, Wilkins-Yel, and other researchers have done qualitative studies on purity culture in the context of race and gender. They found that five out of the nine Black women and women of color they interviewed 鈥渧isualized white women when asked to form a mental image of the ideal pure woman.鈥�

For these interviewees, shame wasn鈥檛 just rooted in the ideals of purity (i.e., saving themselves for marriage) but more specifically, the ideals of white purity, where purity is conflated with Eurocentric beauty standards of being white and thin. The study then highlighted the specific struggles of Black women and women of color in the purity culture movement, which involved racialized sexual double standards: to be morally clean from sexual sin in order to be accepted by God, and to appear white in shape and complexion in order to be desirable. In , we endure the oppressive standard of docile submission, perceived as sex objects under the white male gaze and our fetishization by media and society. 

While I believe every purity culture survivor鈥檚 trauma is worth processing, we can still welcome nuance in our collective healing and recovery. Not everyone will have the same nature and degree of wounds from purity culture, and it鈥檚 vital to heal with the knowledge that white supremacy and sociopolitical powers have been core to our sexual and spiritual injuries. With this knowledge, we need to address that racialized and other marginalized bodies (trans, disabled, fat, and aging bodies) have suffered greater or more complex harm and violence from purity culture.

Hope for Sexual and Spiritual Healing in Our Time

In with Keke Palmer, Janelle Mon谩e looks back at her baptist roots and shares how her church鈥檚 judgment still haunts her experience with pleasure and play. Even with this struggle, Mon谩e points out that her goal is to fight for body autonomy: 鈥淲e will not play into [the conservative church鈥檚] social norms [and] assimilate.鈥�

Seeing artists like Mon谩e combine body agency and creativity gives me hope. In the interview, she didn鈥檛 sugarcoat the journey nor deny the fact that the judgmental voices of her past still influence her, because, as for many of us, they do. And yet she actively chooses to say no to these voices. Instead, she makes music videos like 鈥溾€� and 鈥�,鈥� and became the narrator for the 鈥攎edia serving as beacons for body autonomy and sex education in the entertainment industry.

We live in a time when an album like Mon谩e鈥檚 exists. We live in a time when we can experiment with our bodies and our pleasure more extensively, with the emergence of and that focus on the pleasure and sexuality of women and femmes. We live in a time when we have more resources and social contexts that provide sexual health awareness and advocate for sexual safety in the context of body agency and liberation. If that is not spiritually freeing, then I don鈥檛 know what is.

Birth narratives might also contain clues about how the adjustment to parenthood will go.

 to understand difficult experiences. Stories may be particularly valuable as a source of 鈥渕eaning-making,鈥� the process of finding order in chaos by making sense of unexpected events, identifying silver linings, and discovering the patterns and connections that thread seemingly random events together into a coherent narrative.

In a new study led by , a former graduate student in , we found that the levels of meaning-making in the stories new parents told about their baby鈥檚 birth  in the child鈥檚 first months.

Constructing Meaning in Your Own Life

Finding meaningful themes and patterns in life鈥檚 seeming randomness is a fundamentally human activity. As writer Joan Didion put it, 鈥�.鈥�

Meaning-making can buffer despair in the wake of tragedy. Holocaust survivor Viktor Frankl鈥檚 memoir, , argues that meaning and purpose can prevent the bitterness and disillusionment that can otherwise fester after great loss. Research on what psychologists call 鈥溾€� has found that the level of meaning-making in people鈥檚 narratives about a difficult event predicts their mental health over time.

For example, studies have found  in cancer patients, bereaved parents, and caregivers. Cancer survivors might discover that their chemo ordeal brought them closer to friends and family, or helped them step back from the hustle of everyday life and embrace a slower pace.

Although childbirth is typically experienced as a joyful rather than a tragic event, it can still be unpredictable, frightening, and even life-threatening. Indeed, psychologists have begun to recognize that particularly difficult labors , not just in mothers but in their partners as well. Even normal, nontraumatic births require parents to cope with hours, sometimes days, of pain and discomfort. Therefore, we hypothesized that meaning-making might be an important part of couples鈥� birth narratives, potentially promoting resilience in new parents.

To test these hypotheses, we collected birth stories from 77 couples who were participating in our lab鈥檚 . We visited couples at the hospital within a day or two of their infant鈥檚 birth, and audio-recorded them sharing their stories together. We told couples, 鈥淲e鈥檇 like to hear you tell the story of your birth experience. Start from the beginning and tell us as much as you remember.鈥�

Listening for Meaning-Making in Birth Stories

A team of coders listened to each story and recorded examples of meaning-making, using three categories established in the research literature:

• Sense-making: Identifying reasons that an event might have unfolded the way it did or making connections that show why an event was meaningful. For example, one mother in our sample found meaning in her long labor, describing her baby as 鈥渧ery brave and tough鈥� because she survived hours of pushing.
• Benefit-finding: Pointing out silver linings or unexpected positive effects of a difficult experience. For example, after a difficult birth, one parent in our sample stated, 鈥淚t was scary, but the nurses and the doctors were so nice to us.鈥�
• Change in identity: Describing how an event has transformed one鈥檚 sense of self. As a parent in our sample said, 鈥淚 feel like my life has changed completely with the baby now here.鈥�

Although couples told their story together, we tracked meaning-making separately for each partner. We also rated how much each partner participated in telling their story so we could adjust for their levels of engagement in sharing their birth narrative.

The : Almost all the participants made at least some meaning-making statements in their birth stories. Of the three categories of meaning-making, change-in-identity language surfaced least often, appearing in about 37% of the birth stories. Mothers tended to use more sense-making and benefit-finding language than fathers. And both members of a couple tended to use similar amounts of meaning-making language.

Becoming Mom or Dad

After we had coded all of the narratives, we next looked to see whether meaning-making predicted relationship satisfaction and parenting stress in our couples. The transition to parenthood can be a  and is often linked with .

But when mothers used more sense-making and benefit-finding language, they showed a smaller drop in their relationship satisfaction than moms who used less. Fathers who used more sense-making and benefit-finding language reported lower parenting stress at six months postpartum than dads who used less.

And partners of fathers who used more change-in-identity language also reported lower parenting stress later on, suggesting that dads who experience the transition to parenthood as transformative may be able to help mothers cope better with new parenthood. On the flip side, though, when mothers showed more meaning-making, their partners actually reported more parenting stress at six months postpartum. It may be that when mothers find the birth experience to be more personally meaningful, partners feel left out or pressured to step up their own parenting.

Overall, these results supported our initial hunch that meaning-making might be detectable in birth narratives and forecast 辫补谤别苍迟蝉鈥� psychological adjustment after birth. Greater meaning-making language seemed to benefit the couple relationship and largely buffer parenting stress.

This study was limited by a fairly small sample of cohabiting heterosexual parents. Nevertheless, it highlights the value of stories in shaping family transitions. For therapists working with new parents in the wake of a difficult birth, encouraging couples to seek meaning in their birth story may help ease their transition to parenthood. Journaling and storytelling exercises may help couples process their feelings about their childbirth experiences. After all, the birth of a baby is also the birth of a story鈥攁nd that story is well worth telling.

This story was originally published by . It has been published here under a Creative Commons license.

I have a unique perspective on the subject: I was 6 when Islamic fundamentalists and started a war on joy. I learned quickly that oppression often manifests through the policing of the arts. The morality police cracked down on most types of music, dancing, and even playing. Our teen neighbor鈥檚 birthday party was who pointed AK-47s at us. Half of my sister鈥檚 high school senior class was imprisoned. Without warning, one of her friends was executed.

At the same time, we found ourselves embroiled in a bloody war with Iraq, and daily funerals became routine. There was little to be joyful about, but my family and friends still took dangerous risks to nourish our souls. We intuitively knew playing , singing, and dancing served as powerful coping mechanisms to get us through the devastation of war and theocratic oppression. We broke the law even though we knew we could lose our freedom or even our lives.

More than four decades later, Iranians are still engaging in collective joy as an act of , often with dire consequences. Now as a (MAP) in the United States, I bring music and dance to refugees as a form of communal healing. When I started dancing with refugees in Tijuana, Mexico, in 2018, some activists dismissed the program as frivolous and even wasteful. They argued that refugees needed legal and medical help and permanent housing, not art.

While those are real needs that must be addressed, the shelter directors asked us to continue the program even if we couldn鈥檛 provide a monetary donation. The directors told us that the of our sessions, including increased collaboration, lasted several days. Participants reported feeling more at ease and less anxious or depressed, with even headaches disappearing.

During the pandemic lockdown, asylum seekers stranded in Mexico insisted on continuing the program, leading us to transfer our dancing to Zoom sessions.

Around the same time, essential workers and activists dealing with began reaching out to us to organize similar programs. Having witnessed countless instances of transformation in these sessions, I鈥檝e grown increasingly curious about the link between joy and , an interdisciplinary field of research that explores how aesthetic experiences and the arts affect the body, brain, and behavior.

Susan Magsamen, the founder of the International Arts + Mind Lab at Johns Hopkins University and the co-author of , confirms that there is an inherent human need for joy 鈥渢hrough neuroaesthetic experiences.鈥� Activities that bring us joy stimulate the release of dopamine in the brain, which contributes to mood regulation, learning, and memory enhancement. 鈥淩esearchers are confirming that the body naturally leans toward health and it is in play, music, dance, and visual arts that our bodies respond, find nourishment and healing,鈥� she says.

Given that the nervous system acts as a homing device for neuroaesthetic experiences that stabilize, nourish, and fortify us, it is unsurprising that even in the most dangerous parts of the world, people engage in communal arts. Here are a few examples of such resilience and resistance in the most perilous conditions.

Art With Asylum-Seekers in Tijuana

Currently, the U.S. has more than with unprecedented waiting periods of up to seven years. The trauma of experiencing violence, fleeing an unsafe home, undergoing a grueling journey, and then facing the uncertainty of the asylum process takes a heavy toll on , many of whom are children. 

Ada, the director of a migrant shelter in Tijuana, who is using a pseudonym to protect her identity, believes that collective joy expressed through the arts provides a sanctuary for healing. Migrants themselves view this as an act of resistance in the face of unjust and often draconian policies that prevent them from seeking refuge. 鈥淭hat鈥檚 why we adopted the concept of joyful resistance or in Spanish, ,鈥� Ada says. The practice allows migrants, whose bodies are constantly policed, to reclaim some of their .

Ada and her group also noticed early on that the media doesn鈥檛 include migrant voices. 鈥淢ost of the time when there is talk of immigration, you only hear experts, authorities, and organizations,鈥� Ada adds. By engaging in music, art, and mural making, migrants can raise their own voices without compromising their identity. In this way, resiste gozando has become a powerful vehicle for amplifying migrant voices.

Dancing With Freed Congolese Child Soldiers in Uganda

In , where Congolese Tutsi have been systematically massacred and driven from their ancestral lands for nearly 30 years, my MAP colleague, , dances with traumatized kids in three settlements catering to hundreds of thousands of refugees in western Uganda.

When he was 18 months old, Conrad鈥檚 entire family was murdered during the Rwandan genocide; he was the only survivor. His adoptive mother found him hidden in a sorghum garden and brought him to Uganda. 鈥淚 joined MAP because I saw the impact music and dance had on my own healing journey,鈥� he says.

The age range of the child soldiers, the majority being girls, spans from 7 to 14 years old. Most children were kidnapped by various factions of Congolese rebels and endured horrifying experiences, including being trained to become killers themselves. The children were ultimately rescued by joint forces beginning in 2018 and brought to refugee settlements, where Conrad鈥檚 team is providing activities for trauma healing. 

鈥淲e play music, move our bodies, and create together,鈥� Conrad adds. He finds that the traditional popular in central Africa connects the children to their roots and makes healing war wounds more accessible. 鈥淚t鈥檚 amazing to see the smiles and laughter return to their faces as they begin to heal.鈥�

Singing and Dancing With Kids in Gaza

Even before Oct. 7, 2023, many Palestinians experienced . Instead of , where the mind is trapped in a loop of a traumatic experience, there is no end to the trauma they are experiencing every single day. The situation is far worse now, especially for the more than 600,000 children who are enduring starvation, , constant displacement, and loss of loved ones.

My MAP colleague, , recognized the urgent need to tend to children鈥檚 mental health and was set to resume the singing program a few weeks after October 7. Before he could begin, he was in an Israeli airstrike.

During months of incessant bombing and slaughter, another one of my colleagues, , sang indigenous Palestinian songs with displaced children in different parts of Gaza. Those children told Shamaly they were afraid of being bombed and becoming martyrs. Singing together allowed them to experience grounding, joy, and respite from the constant horror. 

With the help of donors, MAP evacuated Shamaly in April, but her entire family is still suffering in Gaza. 鈥淚t鈥檚 really a genocide,鈥� she says. 鈥淭he Israeli army bombed everything. Gaza is destroyed. Our life [is] destroyed,鈥� she adds. After leaving Palestine, Shamaly immediately returned to music to help her with the trauma she experienced and to use her voice to bring attention to the plight of Palestinians. Her music was live streamed at this past April.

At the time of this writing Bashar Al-Bilbisi, a 23-year-old pharmacist and the director of the Al-Fursan Arts Ensemble still teaches , an Indigenous Palestinian dance, to children in Gaza. He, and the children he dances with, were displaced multiple times and are still on the move to evade Israeli airstrikes. 鈥淲e dance together to preserve our heritage and also to be a means of discharging negative energy in all areas of Gaza, despite all the difficulties we are exposed to due to the war,鈥� he says.

Communal Culture for Collective Healing

Joy and art are transcendent and essential to human . 鈥淲e often say that the arts create culture, culture creates community, and community creates humanity,鈥� says Magsamen.

Refugees, the oppressed, and the dispossessed carry their community, culture, and humanity in their blood through generations-old songs, poetry, and dances that no assailant can take away from them. 鈥淭hese aspects of their culture are ingrained in them, and they need nothing more than their voices and their bodies to access the foundational aspects of their communities,鈥� adds Magsamen.

Many populations have and are currently experiencing . Communal art, then, fosters joy, serving as a primer to connect to one鈥檚 self to one鈥檚 roots, and to others. It also provides a supportive environment to invite and process more difficult emotions. While addressing the root causes of individual suffering from various angles is essential, now is the perfect time to embark on the journey of through cultivating joyful communal practices, nurturing healthier individuals, and fostering a more robust society.

The little girl approached her mother, who told her that she was menstruating. She said menstrual blood was dirty, and that menstruation was a curse from God. Paudel was so traumatized by witnessing these restrictive monthly practices that she begged God to turn her into a boy. When that didn鈥檛 happen, at 9 years old, she attempted suicide, and survived.

When Paudel鈥檚 first menstruation arrived at age 14, rather than be forced to follow the restrictions surrounding the idea of menstruation being unclean, she ran away from home.

It was only when she started attending nursing college the next year that Paudel learned that menstrual blood is a natural part of the body. She realized that the menstrual discrimination that she, her mother, and her three sisters experienced was widespread in Nepal. It affected both rural and urban menstruators, rich or poor.

As Paudel later learned in her career as a nurse, activist, and writer, many of her educated friends and colleagues who lived in the capital, Kathmandu, still practiced menstrual restrictions because of the fear of elders, religion, culture, traditions, or societal pressures.

鈥淢enstrual discrimination plays a huge role in constructing and reinforcing unequal power relations and patriarchy,鈥� says Paudel, who has since pioneered the movement for dignified menstruation and founded the Global South Coalition for Dignified Menstruation.

Seclusion and Secrecy

Menstrual discrimination takes many different forms. In , women are told they shouldn鈥檛 cook, visit sacred temples, or touch or go near plants. In Democratic Republic of Congo, menstruating women are told that if they work in the field the whole harvest will be destroyed. In some communities in Pakistan, women are told not to consume cold beverages, ice cream, fish, meat, milk, eggs, or pickles. 

In addition to these restrictions, there are also widespread myths about menstruation that are harmful for the physical and mental health of those who menstruate.

When Pacifique Doriane-Sognonvi started bleeding for the first time at 14 years old, she saw the drops of blood slowly trickling down her thighs and thought that she must have hurt herself somehow. She had never heard the word 鈥減eriod鈥� before and didn鈥檛 know what to do. Doriane-Sognonvi went to her older sister for advice, who informed their father, and together they cut up pieces of clothes and stuffed them in her underwear.

Then her father turned to her with a stern look on his face and proclaimed: 鈥泪蹿 you come close to a boy and touch him or if he touches you while you are bleeding, you will become pregnant.鈥�

Puzzled and still feeling uncomfortable from the itching fabric, she accepted her father鈥檚 words as truth. It was only at 21 years old, when Doriane-Sognonvi left home and started university, that she learned that her father鈥檚 warning was untrue. 

鈥淲hen I found out that it was a lie, I was horrified and super angry,鈥� says Doriane-Sognonvi, who now works as a peer educator for the nonprofit . She organizes workshops about menstrual hygiene and sexual and reproductive health for the LGBTQ community in Ivory Coast.

Without proper and accurate information, menstruators cannot make informed decisions about their bodies and lives, and they become susceptible to misinformation.

The problem often comes down to one simple fact: The period is considered dirty, and menstruating women are either forced to stay secluded or keep it a secret. This builds fear, stigma, and silence about menstruation鈥攁t home, at school, at work, and in public.

鈥淚n Ivory Coast, menstruation is viewed as a handicap or an illness,鈥� Doriane-Sognonvi says.

The stigmatization and lack of awareness feeds into an ignorance of menstruation as an issue of public health importance. Globally, to menstrual products and adequate facilities for menstrual hygiene management.

鈥淢any girls in rural areas have never seen a pad in their whole life,鈥� says Crispine Ngena, a reproductive and climate justice activist from Democratic Republic of Congo, who is helping communities displaced after volcanic eruptions and military interventions in eastern Congo. 鈥淎ccess to period products just doesn鈥檛 exist here.鈥�

Recognizing Discrimination

For a long time, Paudel didn鈥檛 think there was hope for menstruating people. All she could see was pain, trauma, and suffering. Despite isolation and even death threats, she has dedicated her life to changing the way societies see menstruation.  

Paudel spearheaded a global movement for dignified menstruation, which she defines as 鈥渁 state where menstruators of all identities are free from any forms of menstrual discrimination, including taboos, shyness, stigma, abuse, violence, restrictions, and deprivation from services and resources associated with menstruation throughout the life cycle of menstruators.鈥澨�

The main goal of the Global South Coalition for Dignified Menstruation is to ensure that international organizations and countries recognize that menstrual discrimination plays a key role in constructing and shaping unequal power relations and patriarchy, starting in childhood.  

鈥淢ore than half of the population of this planet experiences menstrual discrimination in one way or another, but the United Nations has never recognized that,鈥� Paudel says.  

That鈥檚 why she has been pushing the United Nations to acknowledge menstrual discrimination as a barrier to gender equality and as a form of sexual and gender-based violence. She has presented her work to the Commission on the Status of Women four times and submitted a petition to the UN in 2019.听听

Menstrual discrimination violates individuals鈥� rights to dignity, freedom, and equality. It also denies (or severely complicates) their access to food and water, and can dramatically increase health risks due to the delay or denial of care.

Paudel has been consulting with governments to include dignified menstruation in national policies. Nepal has had a dignified menstruation policy since 2017. If anyone reports any form of menstrual discrimination, it is considered a social crime. By law, the perpetrator can be punished with up to three months in jail and/or a $30 bail. Paudel has been providing technical input to menstrual equity policies and research for other countries in the Global South.   

Paudel has also been teaching about menstruation at universities and high schools worldwide, mentoring Ph.D. fellows internationally, and writing fiction and nonfiction books on dignified menstruation. For her, menstruation dignity is the way to achieve equality, dismantle patriarchy, achieve sustainable development goals, and reimagine feminism.  

Paudel is often met with hostility, abuse, and blame from Nepalese and international organizations who accuse her of being anti-Hindu, negativist, and anti-tradition.  

鈥淚 don鈥檛 mind,鈥� Paudel says. 鈥淚 will never give up. I will do this whether people support me or not, till my last breath.鈥�

Conversations As a Gateway

But even without a war or a climate disaster, getting a pad or tampon can be an insurmountable task. In the United States, . This so-called period poverty鈥攊n which low-income menstruators cannot afford menstrual products鈥攃an be a one-time experience or a permanent state.

After reading by Nadya Okamoto, Aydan Garland-Miner realized that period poverty intersected with multiple issues of injustice that she was already passionate about. She launched a chapter of the menstrual equity nonprofit PERIOD at her university and distributed period products, advocated for menstrual equity legislation in Washington state, and hosted educational workshops for students. 

Now she works as the global community engagement coordinator at PERIOD, which annually distributes millions of menstrual products to grassroots organizations who are serving their communities. PERIOD has 180 chapters in the United States and 34 internationally. 

Talking about menstruation is not celebrated or popular, but Garland-Miner strongly believes it has to be done. 鈥淵ou don鈥檛 have to be giving a formal talk about menstruation, but you can talk to anyone and everyone about the fact that period poverty exists. The uncomfortable conversations are the ones that we should be having the most,鈥� she says.

. In 2023, there were more than 130 menstrual equity-related pieces of legislation introduced across the nation. 

In 2021,, which expanded period health education in the school curriculum and provides free menstrual products for all menstruating students in public schools. Oregon is one of 10 states that both require and fund period supplies. Eleven states require period products in schools but don鈥檛 provide the funding for them. And seven states provide funding but don鈥檛 require period products in schools. 

Advocates are also working on which deems menstrual products to be luxury items. This tax is on the books in 21 U.S. states, making period products even more expensive and less accessible to low-income people. 

鈥淏y removing the sales tax on menstrual products, we are recognizing that these items are essential items for health,鈥� says Garland-Miner. 鈥淓liminating the tax won鈥檛 end period poverty, but it does help identify the products as the medical necessities they are.鈥�

Making Periods Safer

In the Democratic Republic of Congo, menstrual health doesn鈥檛 only mean period products but also access to water, which is a huge challenge in communities where Crispine Ngena works.

In the North Kivu province, access to water sources is limited. People mainly rely on rainwater, which, due to climate change, has become irregular. People have to buy 20-liter (5-gallon) jugs of water that cost U.S. $0.17鈥攁 major expense when . With water being scarce and underwear a luxury item, menstruation is hard to manage and many bleeding people suffer from infections and rashes.

That is why Ngena鈥檚 nonprofit, Actions for the Conservation of Nature and Community Development (ACNDC), has been distributing reusable pads, water buckets, soaps, and underwear to different communities. They have been working with groups of girls who were displaced after the volcanic eruption of Mount Nyiragongo in 2021 and also with girls who had to move to camps due to the ongoing military conflict in Congo since 2023. For most of these girls in rural areas, it was the first time that they have seen a pad or worn underwear.

Ngena is a firm believer that access to period products should be easy and free for everyone. Without them, girls stay at home, do not go to school, and cannot work or go to religious ceremonies. She says introducing comprehensive sexual education courses at school would help break the stigma around menstruation.

鈥淲ith proper education, girls would learn how to manage their menstruation safely,鈥� says Ngena.

Gender-Responsive Disaster Relief

Educating people about menstrual health is also a priority for Ayesha Amin, a Pakistani women鈥檚 and climate justice activist. Amin鈥檚 nonprofit, Baithak: Challenging Taboos, has been conducting sessions to educate both women and men about different aspects of menstrual health. 

Amin says the most common myth in Pakistan is that women should not bathe during their period because it will lead to infertility. To counter this and other misinformation, Amin and her peer educators speak about physiological, hormonal, physical, and emotional changes, as well as premenstrual syndrome, premenstrual dysphoric disorder, nutrition, managing stress and pain, hygiene, and sanitation. Over the past five years, they have reached 300,000 girls and women with sessions on menstrual health as well as family planning and gender-based violence across Pakistan.

. The floods affected 33 million people, of which 8 million were girls and women of reproductive age.

鈥淲e saw young girls and women having urinary infections because they didn鈥檛 have any menstrual products. They used leaves, ragged clothes, and were not able to change menstrual cloth for an entire day,鈥� Amin says.

During this climate disaster, Baithak set up a flood response to provide menstrual kits to women and girls who were worst affected by the floods. Soon, they received requests from other parts of the country, so they expanded their program. 

Together with the Pakistani government, the nonprofit is building the capacity of grassroots organizations so they can work with their local governments to ensure that climate crisis responses are gender responsive. They are also building the capacity of disaster management authorities in Pakistan to ensure that the needs of menstruating people are prioritized in case of climate emergencies.

While fundraising for menstrual products, Amin has received both positive and negative reactions. 鈥淭here was a whole Twitter campaign saying that 鈥業f you are giving pads to women, also send shaving kits to men.鈥� This really struck me. Women don鈥檛 choose to menstruate during a climate disaster,鈥� Amin says.  

Making Menstruation Positive

Menstruation is a taboo in so many societies. But it doesn鈥檛 have to be. With the right education鈥攁t home, at school, and in the halls of government鈥攎enstruation can be seen as the natural part of life it is. 

鈥泪蹿 we want the menstrual cycle to have a place in all discussions鈥攆rom being listed in the Declaration of Human Rights to pharmaceutical testing, from employment law and work practice to educational approach and exams鈥攚e need to ask the question, 鈥楬ow does this situation disadvantage cyclic women?鈥欌€� says Miranda Gray, a British author of books on menstrual wisdom for modern women. 

鈥淔or society to have a positive image of the menstrual cycle, and for it to be part of discussions, women themselves first need to have a positive view of their own cycle.鈥�

Since grief can be isolating, disorientating, and even polarizing, we often try to ignore or bury it. We don鈥檛 want it taking up too much space or attracting too much attention. It can be a burden, and one that fills us with unnecessary feelings of shame.听

But there鈥檚 evidence that supports that sharing the burden of grief in public invites others to aid in the healing process. It can also allow a stronger social resilience to discuss topics of grief and mourning. And it connects us to community in ways that may be able to enact change. In short, externalization and communal care of grief can be transformative.

The American Psychiatric Association (APA) defines grief as Jamie Eaddy, thanatologist, activist, and founder of has a different definition for grief. She says, 鈥淕rief is our human response to loss, change, and transition.鈥� As a thanatologist鈥攕omeone who studies death, dying, grief, and bereavement鈥攕he believes the experience of grief extends beyond being able to name whom we are grieving. 鈥淏eyond people, it is ideas and safety and all of those things that are not necessarily directed toward us but are felt as losses emotionally for us when they鈥檙e no longer here.鈥�

No matter whom or what we are grieving, Eaddy stresses the importance of recognizing and processing our grief. 鈥淲e know that grief is felt or experienced in the body like stress. And what does stress do to the body? It impacts your, your immune system, your heart.鈥�

Research supports that beyond physiological distress, unattended grief can also negatively impact mental health, including, which according to the, can make sufferers incapable of performing normal activities because of deep, overwhelming feelings of sadness.

The Emotional and Psychological Benefits of Acknowledging Grief

Christiana Awosan, a licensed therapist and founder of in New York, says when the emotions of grief remain trapped in the body and aren鈥檛 processed, 鈥渨e physically, emotionally, and psychologically become paralyzed.鈥�

鈥淚t鈥檚 important to acknowledge not only the loss that we experience but also the process of letting ourselves know that someone and/or something significant has shifted in our lives,鈥� she says.

Melissa Burkhead of Massachusetts says that when she was overwhelmed with grief, her first instinct was to isolate. 鈥淲hen I lost two sister friends and an aunt in a 12-month period, I felt overwhelmed and didn鈥檛 want to talk about it or even get out of bed,鈥� she says. 鈥淏ut when I started going back to church, and people started asking why I hadn鈥檛 been attending, a friend suggested the grief group being held once a week. I attended for six weeks, cried lots of tears, made lots of new friends, and slowly began to feel happy again.鈥�

In contrast, Julia Mallory of Pennsylvania says after her son was killed seven years ago, she felt she had to 鈥済rieve publicly and talk candidly about her loss, and the many layers of loss, even if it conflicted with what people felt grief was supposed to look like.鈥� She says, 鈥淚 felt and heard in my spirit that I needed to speak openly and publicly about it.鈥�

Awosan says acknowledging grief 鈥渁llows you to be patient with yourself and give yourself grace to feel, express, and accept the waves of grief. And in turn, you鈥檒l also have the capacity to provide others with the room to do the same.鈥�

This was true for Mallory. After she began her very personal healing journey, she recognized the need for more compassionate spaces for others to process their grief. She is currently the owner and operator of a community creative space called where she hosts events and 鈥渉ealing hours鈥� for her community to talk about their grief. 

鈥淲e need connection and community in order to process our grief fully,鈥� she says.

Awosan and Eaddy agree that grieving in public can provide validation of our humanity.

鈥淪haring grief gives people the opportunity to allow themselves to be cared for and to care for others. It allows people to witness how they and others experience and express grief while being human,鈥� Awosan says.

鈥淎t the end of the day, I don鈥檛 need validation that I鈥檓 human,鈥� Eaddy says, 鈥渂ut there is a part of all of us as humans that longs for connection and validation.鈥� She adds, 鈥淚n isolation we don鈥檛 avail ourselves of the healing power that can come from somebody saying, 鈥業 see you.鈥� Your person or thing, the experience, whatever the loss is, it matters.鈥� 

Public Grief Can Lead to Mobilization

We know we can experience grief due to and traumatic stress, but we have also seen how collective grief can lead to mobilization. We鈥檝e seen environmental activism as the result of the grief over environmental degradation. We鈥檝e seen the women鈥檚 rights movement come as a result of the grief over gender inequality, and global movements for justice following the grief over political or racial injustice.

Research shows that particularly in the Black community, and calls for systemic change. We saw this in the form of protest and sit-ins during the civil rights movement, and more recently from 2016 to 2020 through the work of movement in response to the murders of Travyon Martin, Breonna Taylor, George Floyd, and many others.

Eaddy says, 鈥淔or me, Black Lives Matter publicly said, 鈥榃e are grieving. We are hurting. We are sad, and we鈥檙e not going to hurt in the closet.鈥欌€� She explains that hiding grief has social consequences as well. 鈥泪蹿 I have to hurt in the closet, it gets to remain hidden from everybody, including those who are causing the pain.鈥�

She adds, 鈥淛ust by putting it in the world鈥檚 face, there was a percentage of humans who decided they would no longer be ignorant to what was happening to fellow humans.鈥�

Currently, we are seeing public grief and grievance play out with protests in response to the innocent lives lost in Palestine and the Congo.

Collective Healing Through Grieving in Public

Just as there is collective grief, there can also be collective healing. Whether it鈥檚 through church groups, or sharing stories and experiences to create empathy and unity, or forming support networks and communities, we can find ways to heal together.

Eaddy says, 鈥淵ou need to grieve in public because when we grieve in isolation, it pulls us away from people, and the truth is we are not designed or created to operate in isolation. We are created to be in community.鈥�

If we don鈥檛 share our grief, we contribute to the lack of empathy and understanding in society, the perpetuation of systemic injustices and inequalities, and divisions and conflicts within communities. For the sake of personal and collective well-being and empowerment, individuals and society must choose to acknowledge and process grief.  

The power of public grieving is its ability to connect us and drive healing and change.

Soon I鈥檓 in the center of the lake, alone with the water striders, which scoot away from me on their long and spindly legs as my hands cut through the surface of the water.

My breathing settles and my thoughts fall away as I focus on the movement of my legs and arms, propelling me forward. The sun strains to break through the marshmallow clouds, its weak rays reflecting off the surface of the water.

If there is anything as peaceful as this, I have yet to discover it.

Dr. Melissa Lem, a Vancouver family physician and longtime advocate of the health benefits of nature, remembers feeling that same quieting effect while spending time outdoors. (Lem and I went to high school together.)

鈥淚 grew up feeling that connection to nature and not necessarily feeling as connected to my community as I should have been,鈥� she tells me. She experienced racism and bullying on the playground and at school. 鈥淚 found when I spent time at the park or when our family would go camping in Bruce Peninsula National Park . . . I felt so comfortable. I didn鈥檛 feel like anyone was going to come and yell something at me or exclude me.鈥�

Lem tells me about facing other stressors in her early career as a doctor, and the way nature improved her mental health. In her first role, as a rural family physician in Northern British Columbia, she faced intensive work running an emergency room and performing acute care during long overnight shifts. Despite the challenges, she loved the work and credits easy access to nature as part of what helped her cope.

鈥淢y commute was walking to work past the hospital garden and looking at the mist rising over the mountains鈥擨 think that went a long way,鈥� she says. Then she moved to the busy metropolis of Toronto, which she describes as 鈥渟treetcar town, skyscrapers, and concrete.鈥�

Suddenly she found herself much more stressed, even though her work was easier than in B.C. After she realized that her problem was a lack of access to the great outdoors, she decided to do a literature review to collect evidence that would support her intuitive sense that nature was a missing piece of the well-being puzzle.

鈥淚t had to be backed up by evidence, because I鈥檓 a doctor trained in evidence-based medicine,鈥� she says. What Lem found was a large body of literature on the health benefits of nature, which she says none of her colleagues were talking about at the time.

A systematic review from 2018 included 143 studies on the topic from the previous decade, illustrating a recent and rapid growth in the study of nature and health. A quick search on PubMed for citations since 2018 gave me more than 2,000 results for 鈥済reenspace and health,鈥� with that number growing year over year.

It鈥檚 not just the wilds of the forest that have been studied. The systematic review I reference above included studies of 11 different types of greenspace, such as urban trees and street greenery, larger parks, forests, and even the effect of viewing trees from a hospital room window.

The review found statistically significant benefits for a heap of objective (and some self-reported) health measures, including all-cause mortality, type 2 diabetes, measures of cardiovascular health, blood pressure, stress hormone levels, and preterm birth.

There are also many studies showing that nature can be therapeutic for those with mental health challenges, including reviews on horticulture therapy and wilderness adventure therapy for young people. What we don鈥檛 yet fully understand are the underlying reasons why greenspace might benefit our mental well-being, which means we don鈥檛 know enough about how to replicate these interventions for different populations.

Would gardening be something teens would want to do? Could wilderness adventure therapy work for older people with physical limitations?

鈥淎 doctor prescribing nature time in Regent Park is different from a doctor prescribing nature in Kitsilano, so we have to definitely be aware of our patient鈥檚 strengths and abilities, and also the communities we live in,鈥� says Lem, comparing a low-income housing community in Toronto with a trendy neighborhood in Vancouver surrounded by beautiful biodiversity.

Lack of access to nature is a problem, with many people living in urban gray areas where scraggly trees barely survive in a concrete desert. 鈥淲e鈥檙e coming up with a plan for programs where people can get free or discounted transit to greenspaces to reduce that barrier,鈥� she says, adding that it鈥檚 also important to change people鈥檚 perceptions of what nature can be. 鈥淵ou don鈥檛 have to be in the middle of a forest

by yourself or on the side of a mountain; it can be in your garden or your neighborhood park.鈥�

It was a naturopathic doctor (ND) who handed me my first PaRx鈥攁 park prescription, sometimes called a ParkRx or NatureRx. I had exhausted all the treatment options with my family doctor and had turned to alternative medicine for answers.

In addition to several nutritional supplements and dietary changes, my ND suggested I leave my claustrophobic cubicle each day at lunchtime, head over to a small butterfly garden adjacent to our office building, and take off my shoes. I was to stand in the grass for 10 minutes, feeling the cool blades tickling my toes. This was written down on an actual prescription pad, and I carried the slip home with me in my bag.

The prescription felt silly at first, but I dutifully followed it every day throughout that summer. I would burst out of the air-conditioned building at lunchtime into a wave of oppressive heat, my eyes adjusting from fake fluorescent lighting to the stunning white glare of the sun. I鈥檇 shuffle around in the grass while other employees lounged near the garden eating their lunch.

And I was surprised to find that it helped鈥攎y lunchtime communion with this small greenspace seemed to set the tone for a better mood in the afternoon and post-work evening. I began to look for other ways to incorporate the outdoors into my everyday life, like biking to work instead of taking the bus. I went for daily walks in the ravine behind my house.

Nature prescriptions, or 鈥渘ature pills,鈥� are a growing area of interest for researchers and medical practitioners. Lem is one of the leaders in the movement in Canada and has launched the Park Prescriptions (PaRx) initiative with the BC Parks Foundation, a program offering health care professionals nature prescription files and codes, with instructions for how to prescribe and log their nature prescriptions.

鈥淭here are just under 100,000 physicians in Canada, and over 5,000 registered for our program, so that鈥檚 over 5 percent of doctors,鈥� she says. 鈥淚 think it鈥檚 important for nature to become routine advice during a health care visit鈥攄iet, exercise, sleep, and nature time.鈥� Lem calls these the four central pillars of health, and she鈥檚 excited to see the movement growing among physicians.

I connect my own time in nature to similar benefits I get from practicing mindfulness. I believe that it鈥檚 not just about the trees that I鈥檓 seeing or the cold water that鈥檚 lapping around me. The setting becomes the doorway to a deeper connection with my body, which gives me the space I need to mindfully observe all the things happening within and around me鈥攕omething I wouldn鈥檛 be able to tap into if I were distracted by my phone or hurrying through a park to get to a destination.

The science agrees with me: the mindful component of time in the outdoors could be one of the key reasons we experience such significant changes in our psychological and physiological health.

Other research suggests that it鈥檚 not only the positive health outcome that we get from nature that is the interesting part鈥攊t鈥檚 what predicts those positive changes. In the example of my cold lake swim, being in the presence of something awe-inspiring could be what鈥檚 causing real physical changes in my body.

Adapted with permission of the publisher from the book All in Her Head, written by Misty Pratt and published by Greystone Books in May 2024. Available wherever books are sold.

CORRECTION: This article was updated at 11:27 a.m. PT on July 8, 2024, to correct a misstated number of Canadian physicians participating in the Park Prescriptions program. The correct participation is more 5,000 doctors, or 5% of the less than 100,000 physicians in Canada. Read our corrections policy here.

I was a little girl in the north
at the far edge of a zone
where summer darkness began
long after bedtime 

Where children played outside 
in hours of blue twilight
bare feet and Batman pajamas

I鈥檝e learned

that a moon-sized core spins 
in earth鈥檚 belly
where days are born

that lightning
creates waves
of global heartbeat

that every sunset
every horizon
depends on where we stand 

that every day 
we tell a story 
of light

Yo era una ni帽a peque帽a en el norte 
en el extremo m谩s alejado de una zona 
donde la oscuridad del verano comenzaba 
mucho despu茅s de la hora de acostarse 

Donde los ni帽os jugaban 
afuera con el atardecer azul 
los pies descalzos y las pijamas de Batman 

Yo he aprendido 

Que una luna de sustancia
gira en el vientre de nuestra tierra 
donde nacen los d铆as 

Que el rel谩mpago 
crea olas 
de latidos globales 

Que cada puesta de sol 
Cada horizonte 
depende de d贸nde estemos parados 

Que cada d铆a 
contamos un cuento 
de luz

By Tamela Gordon

鈥淚鈥檓 telling you right now, Tamela! Make me take another step, and I鈥檓a punch you in your fuckin鈥� gut!鈥� 

Shevone Torres and I were on her second day at Casa de Tami. It had been going great鈥攁t first. But the moment we hit the sand, she started getting weird. 

鈥淚鈥檓 not gettin鈥� in that water,鈥� she kept repeating as we searched for the ideal spot to spread out our blankets and beach bags. Her hair, jet black and super curly, was pushed back with a headband, and she was rocking a really cute blue-and-pink bathing suit. 

鈥淩elax. You鈥檙e going to love it,鈥� I assured her. Looking back, I probably should have taken her declaration more seriously. However, she checked the 鈥淵es, I鈥檇 like to add beach and swimming to my wellness itinerary鈥� box on her assessment form. She was also from Jersey, so I assumed she鈥檇 spent a weekend or two at the Jersey Shore. 

I couldn鈥檛 have been more wrong. It took 15 minutes just to convince her to get knee-deep in the water. 

鈥淟et鈥檚 just take a breath and a step at a time,鈥� I kept encouraging. I lightly held onto her fingertips, slowly taking baby steps so tiny I was sure she wouldn鈥檛 notice. She noticed. 

鈥淣igga, you can breathe all you want! I, Shevone, am not gettin鈥� deeper in this water! Hoe.鈥� 

It would have been hard to tell at this moment, but Shevone and I were, and still are, very good friends. We met on social media, but our friendship evolved into an in-person dynamic soon after. If I wasn鈥檛 going to Jersey to check in with her, she was coming to New York to see me. She even helped moderate several online spaces I facilitated, helping me navigate the nuances of holding equitable and safe spaces for people. 

Through her, I learned the importance of being self-aware of the privileges and energy I bring into a room. Despite being a person who navigates a marginalized intersection, I embody a unique combination of privileges, such as two supportive parents who have always provided shelter and resources when I lacked, as well as the societal perk of assimilating, moving through mainstream and white spaces that are more abundant with access to valuable resources. Understanding these privileges doesn鈥檛 invalidate my life experience or make me less. 

For as long as I鈥檇 known her, Shevone鈥檚 life was centered around two things: her two sons and activism. And not the keyboard activism that takes place in the comment section. The real frontline shit鈥攖he dangerous part of the movement that leads to direct interaction with the pigs, getting doxxed, and incarceration. 

When she wasn鈥檛 flying around the country for random protests or injustices that any given Black person faced, she was collaborating with a local Black organization that regularly held protests against their county鈥檚 police force as well as state officials. She鈥檇 been arrested in the four years that I鈥檇 known her.

I have been a staunch believer that Black people should stay as far away from anybody鈥檚 鈥渇ront lines鈥� as humanly possible鈥攎ost especially Black marginalized genders. I believe that the dangers we face on a regular basis, the perpetual fear of murder and incarceration, has put too much strain on our already compromised well-beings. 

This couldn鈥檛 be truer for Shevone, who lives with sickle cell anemia and idiopathic chronic pancreatitis. When she wasn鈥檛 fighting for justice in the streets, she was fighting for her life in the emergency room.

In February 2019, after a series of complications and medical neglect, Shevone was hospitalized and in need of expensive medication along with financial assistance to help cover her bills, as she was immobile to hustle as she normally did. I, along with a collective of other Black marginalized genders, fundraised the money through social media. It was a small action as far as we were concerned, but it was also the kind that helped people like Shevone get the medical treatment and resources she needed, as well as people like me maintain housing.

I鈥檝e never been the kind of person who references the acts of kindness I鈥檝e done for someone else. However, when scrolling through my Facebook feed and seeing a video of Shevone screaming through a bullhorn while marching down the street less than one week after getting discharged from the hospital, I felt some kind of way.

鈥淲as that a throwback video of you protesting in the street?鈥� I intentionally Facetimed instead of our normal text message mode, knowing it would throw her off.

鈥淵eah.鈥� She sighed. She went on to explain the situation that led to the protest.

鈥淒o you feel like being there for those people, for that situation that鈥檚 going to exist whether you鈥檙e dead or alive was more important than your health?鈥� 

As I look back, a small flash of guilt comes over me for being so harsh with my friend. But, also, the memories of praying for her life at my altar touch me too.

Years later, the two of us stood in the water, face-to-face with a fear Shevone didn鈥檛 even know she had.

鈥淲e could just … stand here and let the water splash on our legs!鈥� I suggested. 

When somebody forewarns that they鈥檒l resort to bodily harm, I believe them. I was still determined for Shevone to experience a proper dip in the Atlantic, but I knew not to push too hard.

We stood there in silence. I figured Shevone was still contemplating if she was going to punch me. But then, her vibe shifted from raw fear. Her chin quivered, and the puddles in her eyes grew. The gentle splashes of warm water against her bare skin sent her over the edge.

鈥淵ou know what? Let鈥檚 not even focus on the step part!鈥� I encouraged. 鈥淟et鈥檚 just breathe, girl!鈥�

A gasp of air passed through her mouth, and her shoulders collapsed. I considered walking her back to our beach blanket and calling it a day. Water therapy does wonders for a stressed body, but nothing is therapeutic about being scared to death. I was still debating, and Shevone was still quivering, when two small brown children splashed their way between us. They couldn鈥檛 have been older than 6 or 7. The same waves that splashed against our knees delighted the kids as it practically swallowed them.

鈥淪ee.鈥� I grinned, pointing at the children. 鈥淔un! Swimming is fun. I promise!鈥� 

It would take another 10 minutes of 鈥渁 breath and a step,鈥� but eventually, Shevone was waist-deep in the water. And then, breast-deep. Each time she got a little deeper, it was as if she had amazed herself.

鈥淚 feel like I could float if I wanted to,鈥� she said, bobbing up and down, taking huge gasps of breath before plunging her body to the ocean floor. Soon enough, she was wading around, her head barely poking above the water. 

For hours, we jumped. Swayed. Floated. Splashed. Exhaled. We laughed at nothing at all. We surrendered to the current, allowing us to do the one thing that was too dangerous to do on dry land: Let go. 

Hours later, over mojitos and Cuban food, we reflected on how necessary it was to exist in moments not reliant on our sacrifice. We didn鈥檛 have to campaign to have a good time; we could go and have one. Like me, Shevone had been programmed to believe that joy, rest, and adventure had to be 鈥渆arned.鈥� 

Societal and cultural standards expect us to appear as Mammies, mules, and fixers. These tropes have such a significant impact on the lives we live that we inhabit their characteristics without even realizing it. By enjoying nature, air, and life, we鈥檙e resisting in the most radical way possible.

As the mojitos kicked in and our coils bounced back, Shevone opened up about the stress she鈥檇 been carrying from intense community organizing. The never-ending conflicts from a male-led organization constantly challenged her boundaries, skills, and needs.

I told her there was more than one way to pursue liberation and that it should never involve us showing up as a sacrifice. I also reminded her about how many Black marginalized genders have died giving to movements that have yet to protect or even respect them. Marsha Johnson. Erica Garner. Venida Browder. Sandra Bland. Korryn Gaines. Oluwatoyin Salau. To their last breath, each one of them sacrificed all they had for a movement that cost them their life. 

I didn鈥檛 want that for Shevone or anyone. I don鈥檛 need bloodshed to be free.

鈥淭he thing is that I don鈥檛 have a lot of time left,鈥� Shevone responded. 鈥淚t鈥檚 important that I do as much work toward my mission as possible to continue to create change, even when I鈥檓 not here.鈥�

鈥淲hat is your mission?鈥� I asked.

鈥淚 want to open up a space called Imperfect Village that provides resources and aids in building community by collecting its fractured parts.鈥� She started perking up, and her eyes widened as she spoke. She had so many ideas for Imperfect Village, so many resources she was ready to organize and provide for her community.

For the remainder of Shevone鈥檚 stay, we had a really good time. I showed her around Miami, specifically Little Havana. We did some light shopping and sightseeing, but most of our time was spent at the one place where she wanted to be: the beach.

Part 2: I Made a Way

by Shevone Torres

I鈥檓 not one who got into activism because it was cool. I fight for my rights. Literally, it鈥檚 something I鈥檝e had to do my entire life as a Black woman, so there鈥檚 nothing new or strange about doing it now regularly.

Activism is essential to me because there are so many racist, ableist, queer-hating systems of oppression that need to be dismantled, and we don鈥檛 all have the capacity to stand up against them. I鈥檓 one of the people with the capacity, so I rarely stay seated.

Before I got to Casa de Tami, I knew the problems I had with leadership at the organization I was a member of were severe, but I didn鈥檛 want to admit how bad it was. A lot of infighting, patriarchal bullshit, and toxic dynamics made it hard to focus on the work and center liberation. How can we get liberated if we鈥檙e constantly coming at each other?

I know how serious Tami is about self-care and mindfulness, so I was ready for meditation and hydration. I needed it, so it was welcome. But I wasn鈥檛 expecting to have my comfort level pushed the way it was at the beach. I said I was interested in the ocean but didn鈥檛 realize how uninterested I thought I was until the plane started flying over Florida and I saw all that blue water. No thank you was my first thought. It looked pretty, but that鈥檚 because you can鈥檛 see the sharks and undercurrent.

Looking at that body of water reminded me of when I was a kid and went swimming with friends and family. At one point, I almost drowned. Thankfully, there was someone around who could swim, and they saved me. I must have buried that memory deep in the back of my mind because I didn鈥檛 remember it until I was on that plane.

By the time we reached the beach, I was in full PTSD mode from that near-drowning. I love Tam to death, but I was serious when I said I wasn鈥檛 taking another step. It wasn鈥檛 until those kids started splashing around and Tam said, 鈥淐ome on, let鈥檚 live!鈥� that I realized something. 

I get emotional admitting this, but I鈥檇 been so consumed with death that living was just happening before death for most of my life. When you鈥檝e got a severe and life-threatening illness, you are not thinking about where you鈥檙e going to be when you鈥檙e 80; you get to work on what you want from life right now. 

When I finally let go and went into the deep part of the ocean, I let go of all those fears and thoughts of death. I was alive, and I was well. The high I got from being in that water was unlike anything I had ever hit off a blunt. My body felt healthy too!

I鈥檝e always had someone push me into leading something, taking over something. I never really had anyone push me to do something fun for me. It was such a thrill. 

When I returned to Jersey, I could only think about the beach. I started Googling all these different cities and countries with amazing beaches鈥攖he Caribbean, Mexico, Central America. I wanted more of that experience. The thought of going somewhere exotic and tropical excited me for a while, but life got in the way. I went back to protesting and organizing and the same old routine. 

But then, about three months after I returned home, something changed. There was a conflict in the organization I was a part of. It wasn鈥檛 even a big deal, but it was something that proved to me that their objective and mine had become totally different. So when somebody asked me to do something, I said, 鈥淣ah, I鈥檓 out.鈥� 

Just like that! I didn鈥檛 even feel sorry about it. I felt like, seeing as I don鈥檛 know how much time I have left, I can鈥檛 be playing around in spaces that take up time but don鈥檛 offer any real change. I need to be a part of communities serious about caring for each other. I realize now that my time and my spirit are best served in spaces where I am offering direct care and support to my people. 

I will always be Shevone, an activist. But I will also be Shevone, the human. I understand now that my activism can change and expand over the years and shouldn鈥檛 come at the expense of my happiness or livelihood.

That鈥檚 what inspired me to get Imperfect Village Org finally started. I finally did it鈥擨 am the proud founder and president of a nonprofit that provides for the community everything from holiday meals to book bags and school supplies. 

I also work as a drug outreach volunteer helping people who struggle with substance abuse. It鈥檚 not easy, and even when I can help someone off the brink of death, I still worry about them and hope they鈥檒l be OK. But, at least in that moment, I鈥檓 there for them, and it鈥檚 help that I know they need, whether they want to take it or not.

Since I鈥檝e taken a big step back from frontline activism, my health has stabilized. I haven鈥檛 been in the hospital in almost a year, and for the most part, I feel healthy. Of course, my illnesses aren鈥檛 curable, but at least, at this point, they鈥檙e managed, which is the most I can ask.

Life still isn鈥檛 easy, but at least I鈥檓 not afraid to live anymore.

This excerpt from  (Simon & Schuster, 2024) appears by permission of the publisher.

鈥淭hese are all typical signs there might be a bullying problem,鈥� says Bettina D茅nervaud, co-founder of the Swiss initiative Hilfe bei Mobbing, which translates as 鈥淗elp With Bullying.鈥� She and her two colleagues use a 30-point checklist to evaluate whether there is an underlying issue of mental, emotional, and physical bullying or something else鈥攎aybe a conflict, which might require conflict resolution. 鈥淎 conflict is usually resolved in a matter of days or weeks, but bullying can go on for months or even years,鈥� D茅nervaud says.

What happens next sounds counterintuitive. Instead of being punished, the bullies are invited to help the bullied student. In a 2008 that looked at 220 bullying cases, the No-Blame Approach, as this method is known, was successful in 192, or 87%, of the cases. In most evaluated schools, it only took two or three weeks for the bullying to stop.

This stunning success rate prompted Bettina D茅nervaud to sign up for training with German mediator Detlef Beck in 2016 and to start a consulting office for bullying in 2019.

With Ben, D茅nervaud began by encouraging a personal talk between him and the teacher he trusts most. (D茅nervaud or one of her colleagues is sometimes present in person or via Zoom if the teacher has not been trained in bullying intervention.) The goal is for Ben to talk openly and confidentially about everything that happened, his emotions, and his thoughts about the bullies. 

鈥淭his is an opportunity for them to get everything off their chest that bears down on them and to make sure we have their consent for the next steps,鈥� D茅nervaud explains. 鈥淣othing happens against the victim鈥檚 wishes, and even the parents aren鈥檛 told details about what the child revealed in the confidential talk.鈥� 

In Ben鈥檚 case, this was the first time anybody learned that the bullying had been much worse than his parents and teachers assumed. It included other children tripping and shoving Ben, name-calling, and excluding him from games. He was also voted 鈥渦gliest鈥� in his class in an online 鈥減oll.鈥� The bullying had started much earlier and gone on for much longer than the parents feared. The teacher also asked what would help him feel safe.

The second step is the core of the No-Blame Approach. It includes calling six to eight children whom the teacher chooses into a meeting set up as a social get-together: in Ben鈥檚 case, three of the bullies, three students Ben felt he could count on, and two 鈥渘eutral鈥� tagalongs. The children are not told the meeting is about Ben. 鈥淚 have a problem,鈥� the teacher might start the discussion after some small talk. 鈥淚 noticed some students don鈥檛 feel supported in class. What can we do to help them, for instance, Ben?鈥� 

The teacher carefully avoids calling out the bullies and instead says: 鈥淚 notice the other students are looking up to you. What you say counts.鈥� In D茅nervaud鈥檚 experience, 鈥淭hat immediately makes the bully feel seen. They feel they matter.鈥�

The teacher then asks for suggestions: 鈥淲hat do you think you could do to help?鈥�

One boy volunteered, 鈥淲e could include him in our afternoon soccer group.鈥� Another suggested, 鈥淚 could talk to him in the breaks.鈥� 

The group writes these suggestions on a whiteboard.

The third step includes follow-ups with all students, including Ben, within the next few weeks. If necessary, the intervention might be repeated or tweaked.

鈥淭he goal is to change the social dynamic,鈥� D茅nervaud says, 鈥渁nd to lay open what has been happening.鈥� Younger children often start crying in these meetings, D茅nervaud has observed, 鈥渂ecause they realize for the first time what has been happening and how unhappy the bullying victim has been. We talk about empathy, tolerance, and respect. How do I want to be treated, and how do I treat others?鈥�

The No-Blame Approach was developed in the U.K. in the early 1990s by psychologist Barbara Maines and educator George Robinson. Even in severe bullying cases, this approach encourages educators and psychologists not to blame and punish the perpetrators, except for criminal offenses. Two , Heike Blume, and Detlef Beck, simplified the approach further and have trained more than 20,000 educators in Germany, Austria, and Switzerland since 2003.

Switzerland is number one in bullying, according to the global 2018 (Programme for International Student Assessment) study by the OECD (Organisation for Economic Co-operation and Development). The survey shows a rise in school bullying since the previous PISA survey in 2015, with the rate of physical bullying in Switzerland. 

Bettina D茅nervaud can only speculate about the reasons: 鈥淢aybe the pressure to perform?鈥�

Experts agree that bullying can cause , including depression and anxiety, self-harm, health complaints, and decreased academic achievement. 鈥泪蹿 this issue is not dealt with, the harm can persist for many years, even into adulthood,鈥� D茅nervaud observed. A Washington Post analysis found nearly in the U.S. in recent years when a bullied student took his or her own life. 

Almost every fifth student in the and Europe says they have experienced bullying. Nearly half of teens say they have been the victim of cyberbullying, according to . In the U.S., most states have enacted , but how they are implemented on the ground varies greatly, not only from state to state but also from school to school.

D茅nervaud has been a language teacher for more than two decades, mostly for adults but also for teenagers and children. Because parents, students, and teachers frequently asked her for advice on bullying, she grasped the enormity of the need. She decided to focus on that issue: 鈥淚 realized there were not a lot of specialized offerings. In the standard teacher training, the topic is addressed in a two-hour lecture, which simply isn鈥檛 sufficient.鈥� Concerned parents or teenagers are often told to call the mental health hotline, D茅nervaud says, 鈥渂ut it usually offers general psychological advice, not specifically how to proceed and what the next steps should be regarding bullying.鈥� 

Hers is the only office in Switzerland solely dedicated to the issue of bullying, though the magnitude of the problem is rising worldwide.

She and her two colleagues get about 10 calls a week, she says, 鈥渕ostly from parents or from schools who request training for their staff.鈥� She is frustrated by what she sees as a failure of schools to take the issue seriously. 鈥淲e often hear, 鈥極h, the kids will sort it out.鈥� We sometimes see glaring inaction by the schools who try to dodge responsibility,鈥� D茅nervaud says. 鈥淭oo often, we learn that the schools do nothing, or even worse, they put the victim and the perpetrator at one table and expect them to sort it out. That鈥檚 almost always counterproductive.鈥� 

In D茅nervaud鈥檚 experience, punishing the perpetrators tends to worsen the bullying for the victim. 鈥淯sually, the bullies will make the victim 鈥榩ay.鈥� Or the victim gets sent into therapy, enforcing the feeling there must be something wrong with him or her, because they are singled out and need to get help, while no intervention happens with the bullies.鈥�

Somewhat surprisingly, D茅nervaud says in her experience, bullying is not tied to specific victim characteristics, such as weight, looks, or social status. However, LGBTQ students are at a significantly greater risk of bullying than their peers.听

鈥淐ontrary to what most people believe and what I, too, believed at the beginning, there is no 鈥榯ypical鈥� bullying victim. Anybody can be singled out to become the victim of bullying,鈥� she says. 鈥淭hat鈥檚 why focusing on what is perceived as being 鈥榳rong鈥� with the target, such as losing weight or changing their looks, does not work.鈥�

She sees the underlying causes of bullying in the social dynamics at a school. The nerd with glasses bullied in one school might be envied in another community for his smarts.

This is part of why D茅nervaud is convinced parents and bullying victims must not be left alone to solve the issue. 鈥淭hese parents are often desperate and sometimes even sell their home and leave the community they were a part of, uprooting the siblings too, to send their kid to a different school,鈥� she explains. In Switzerland, parents have to send their kids to the public school closest to their zip code unless they can afford the tuition for private schools. 

Because she tried in vain to get public funding and make her service free, D茅nervaud and her two colleagues have to charge either the parents or the schools for the consultations and training. 鈥淚 wish we could offer it for free,鈥� she says.

She sees limits to the No-Blame Approach 鈥渨hen bullying has gone on for too long, sometimes for years. Then the patterns are so ingrained that removing the victim from the situation might be the best solution.鈥� And sometimes, she admits, the approach is poorly implemented. 鈥淭hen we intervene or try the approach again with a different group of students.鈥�

When bullying turns into criminal behavior, she recommends involving the authorities. One of the worst cases in her practice was that of a student who was made drunk and severely sexually abused. 鈥淗e ended up leaving that school because the abuse had also been documented on video and circulated at school, and there was no way for him to go back there,鈥� she says. 鈥淏ut the school then still needs to work with the students who stay there.鈥�

Other approaches that have shown success include the , which involves the entire school; , a method developed at the University of Turku, Finland, with funding from the Ministry of Education and Culture, that claims to have helped ; and .

Virtually all experts agree that it is best to act preventatively or intervene at the first signs of bullying rather than hoping the issue will resolve itself.

In Ben鈥檚 case, the intervention was successful. After a month, his stomach pains stopped, and he looked forward to attending school again. 

About the author: , is a contributing editor at l. An award-winning author and solutions reporter, her recent books include Bouncing Forward: The Art and Science of Cultivating Resilience (Atria).

This story was (U.S.), which shared this story to be republished within the program, supported by the ICFJ, .

Jennifer Liang, The Action Northeast Trust Co-Founder

After severe ethnic violence disrupted life in the Chirang district of Assam, India, in 2014, Jennifer Liang, co-founder of rural development nonprofit the Action Northeast Trust (referred to as ), sought a means to guide children and youth toward peace building between once-feuding communities. She discovered the U.S. sport of Ultimate, which was novel in the region, easy to learn, required only a disc, and encouraged inclusivity through mixed-gender play. Furthermore, the sport has no referees, which means that players self-officiate and talk through any fouls or conflicts. 鈥淚 felt the sport had a huge potential as a peace sport and to be transformative,鈥� Liang says. 鈥淚 really liked its values.鈥�

In 2015, the ANT trialed a simple version of the game in a conflict-prone area called Deosiri. The community responded so positively that the Manoranjan (meaning 鈥渆ntertainment鈥�) League continues to this day, aimed at children between the ages of 11 and 14. A more advanced form of the game for older youth is practiced in the Rainbow League. In an effort to build social cohesion, the ANT requires every team in the Rainbow League to include players from at least three different villages, three different ethnicities, and three different mother tongues.

In 2023, nearly 3,500 children from about 100 villages participated in the ANT鈥檚 Ultimate program. 鈥淔amilies have now accepted the fact that their children go out to play with children from other communities,鈥� Liang says. 鈥淭hat鈥檚 a nice thing to happen.鈥�

Participating in the program has been transformational for many. In 2019, eight girls were invited to try out for India鈥檚 national team, traveling to the 2020 World Junior Ultimate Championships in Sweden; two girls were selected for the national team. The tournament was eventually canceled due to COVID-19, but the opportunity was still hugely motivational for these girls and others around them.

According to Liang, the success of these eight girls has encouraged parents to become more open to sending their daughters out to play. She relates one story of a father from a conservative background taking his daughter to buy sports shoes for a tournament.

鈥淭he fact that [girls] are now able to play in public, which they never had a chance to do before … alongside boys, gives them a lot of confidence.鈥�

Aminath Zoona, Salted Ventures Swimmers Founder/CEO, Ocean Women Program Co-Leader听

As an island nation, the Maldives is more than 99% water. Most travel between the islands happens by sea, making swimming a much-needed life skill. But many girls and women are never taught how. 鈥淧arents here feel more comfortable sending their daughter to a female instructor to learn swimming,鈥� says Aminath Zoona, who is a mother of three, including a 7-year-old daughter. But the dearth of female instructors means many girls and women miss out on the recreational benefits of the ocean, as well as job opportunities in the tourism and marine conservation sectors. 

Zoona鈥檚 father, a diving expert, taught her to swim at a young age. This gave her a rare skill among her peer group. Zoona grew up to become the first female Maldivian trainer for swim and snorkel instructors in the country.

In 2019, she started her own swim school, , in the nation鈥檚 capital, Mal茅. The school quickly became a success, with a long waitlist of children and adults wanting to learn how to swim. 鈥淏y ensuring that my students have a positive experience while learning swimming, I instill a love for the ocean in them,鈥� Zoona says.

Then in 2022, the United Kingdom鈥揵ased marine conservation charity announced its program that sought to train local women to become swimming and snorkeling instructors. Zoona immediately stepped up. She now co-leads Ocean Women with Flossy Barraud from the British nonprofit.

During the nine-day Ocean Women pilot held in November 2023, Zoona trained five women from Rasdhoo Island (and two men from other islands) to become certified swim and snorkel instructors. The following month, the Ocean Women graduates organized their first swim teaching session: 19 children and five adults participated.

After the successful pilot, Zoona and Barraud are now planning for the next phase of the program. They intend to create new teaching opportunities for the recently graduated instructors and hope to expand the program to other islands in the Maldives. 

鈥淚t鈥檚 all about empowering women,鈥� Zoona says. By expanding the pool of female swim and snorkel instructors, she hopes to create many more ocean champions for the Maldives. 鈥淚t will have a domino effect,鈥� she says.  

Meredith Harper Houston, The Swan Within Founder and Executive Director听

Professional ballet dancer Meredith Harper Houston knows firsthand about the healing power of dance for abuse survivors. She had always wanted to share these transformative benefits鈥攁 dream she realized in 2016 by founding . The nonprofit brings dance to incarcerated girls in Los Angeles County. 

鈥淢y own experiences as a professional athlete, dancer, and trauma survivor drove me to create a program that helps these girls reclaim agency over their bodies,鈥� Harper Houston says. 鈥淚t provides them with the tools to reclaim their lives through the principles and practice of ballet.鈥�

Early on, Harper Houston did all the teaching herself. Eight years later, the program now has 12 dance instructors.

Nearly 700 girls between the ages of 14 and 18, many of whom are from communities of color, have participated in the program to date. They have all experienced some form of trauma, such as physical, emotional, or sexual abuse, or have been victims of sex trafficking. 鈥淲itnessing the resilience and strength of these young individuals reaffirms the importance of our mission,鈥� Harper Houston says.

The program typically runs for 12 weeks, with multiple sessions each week. At the end of the program, the girls present a performance to their families and the facility staff. 鈥淚t is a celebration of the indomitable human spirit,鈥� Harper Houston says.

She says she sees measurable improvements in self-awareness, emotional expression, and interpersonal relationships among the girls in the program. In the short term, the program has been found to reduce fights, suicide attempts, self-harm, and harm to others. In the long term, it has helped these youths reintegrate into society. Harper Houston is now expanding the program to help participants prepare for the job market, with mentoring sessions that cover goal setting, etiquette, and financial literacy.

In 2019, Harper Houston received a Pioneer Woman of the Year award from the office of then Mayor Eric Garcetti and the Los Angeles City Council in recognition of her contribution to incarcerated youth. 鈥淭he program has become a powerful journey of healing and empowerment for both the girls and myself,鈥� Harper Houston says.听