It鈥檚 Time to Make Accessibility Our Collective Responsibility

As an abled parent of a disabled child, I鈥檓 learning to help my son manage accessibility burdens because our communities and institutions aren鈥檛 designed with him in mind. We can do better for children with disabilities by building more accessible, more inclusive communities and by teaching them how to assert their rights in situations that aren鈥檛 in compliance with the law.

The Americans with Disabilities Act (ADA) was signed into law in 1990 and forms the foundation of disability integration into employment and public spaces. The ADA prohibits discrimination on the basis of disability and requires that public spaces be made accessible to people with disabilities.

But the mechanism of enforcement relies on people with disabilities filing individual complaints and lawsuits鈥攖he system as it exists delegates a collective responsibility for accessibility onto the people who are excluded. The result is that, even though the law requiring accessibility for public spaces is more than 30 years old, many places are still inaccessible for people with disabilities.

During the first few years of my son鈥檚 life, he had several medically complex health issues, and life was overwhelming鈥攎y focus was on keeping him alive. I didn鈥檛 have the bandwidth to pick fights over accessibility, so when things weren鈥檛 accessible, we just didn鈥檛 do them.

As a child with medical complexities, my son took a few years to learn to walk well enough to get around. The process of him learning involved several different walkers, along with a stroller to carry his medical equipment. The ADA rules that are in place to make public spaces accessible for wheelchairs should have made more spaces workable for strollers and walkers鈥攂ut they didn鈥檛. I threw out my back more times than I can count trying to balance a crying, fragile child in one arm and 40 pounds of equipment in the other.

What did I do to solve problems in those early years? I leaned hard into abled privilege and tried to steamroll my way through them. I figured out a 40-pound backpack system that could carry his oxygen, suction machine, feeding pump, and all his gear with me on the move. As a small child learning to walk in a world that constantly tripped him, he fell constantly. And with 40 pounds on my back, I had a hard time picking him up.

My next solution was Crossfit鈥攊f he was going to get heavier and would still need to be carried, I would just have to get stronger to keep being able to lift him. I love being strong鈥攂ut I was wrong in thinking I could powerlift a solution to his need to interact with the world.

Here in the United States, we tend toward individual solutions, even when structural solutions would do a much better job at fixing things. The ADA has existed for my son鈥檚 entire life, but it鈥檚 still up to us to figure out whether a location is going to be accessible. The process of figuring out accessibility concerns in advance places a time and planning burden on people with disabilities, and the amount of pre-planning that is required to do basic things that abled people take for granted is immense.

Now that I鈥檝e given up on being a bulldozer mom, I鈥檓 learning how to be more assertive about accessibility needs, and at the same time, I鈥檓 teaching my son how and when to pick a fight over accessibility. In scenarios where there is likely to be pushback, I take the lead as the adult. In scenarios like the movie theater, where staff is (usually) trained and compliant with ADA requests for closed captioning, I nudge him to make the request.

Our major accessibility concern recently has been less about the built environment and more about the way we all behave in public spaces. The lack of COVID-19 mitigation strategies in most of public life creates a substantial accessibility burden for children and youth with medically complex disabilities. Children like my son are at much higher risk for death and serious illness from COVID than children without underlying medical conditions. To pursue their right to an education, medically complex children have to either accept the substantial risk of COVID transmission in classrooms with unmasked, frequently sick and symptomatic classmates, or opt out of in-person school entirely. It鈥檚 in scenarios like these鈥攚here the potential for harm is high, but the pushback on accommodations is frequently hostile鈥攖hat I don鈥檛 have any good guidance to give him.

The curb-cut effect, a phrase coined by civil rights advocate Angela Glover Blackwell, refers to the way programs originally intended to benefit people with disabilities actually turn out to benefit society as a whole. Her initial example is how curb cuts鈥攖he small ramps built into sidewalks to allow for wheelchairs to roll smoothly down鈥攎ake life easier for pedestrians, bicyclists, and families with strollers. The kind of reasonable accommodations under the ADA that make life run smoothly for children and youth with special health care needs work in much the same way. If we look at the accommodations that children with disabilities need as being part of inclusive and universal design, rather than looking at them as special requests, we can all end up with better solutions.

This commentary was produced in partnership with the .

Jennifer McLelland is the California Health Report鈥檚 disability rights columnist. She also serves as the policy director for home- and community-based services at Little Lobbyists, a family-led group that advocates for and with children with complex medical needs and disabilities. She has a bachelor鈥檚 degree in public policy and management from the University of Southern California and a master鈥檚 degree in criminology from California State University, Fresno.

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