As an abled parent of a disabled child, I’m learning to help my son manage accessibility burdens because our communities and institutions aren’t 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’t in compliance with the law.
The Americans with Disabilities Act 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 – the 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’s life, he had several medically complex health issues and life was overwhelming – my focus was on keeping him alive. I didn’t have the bandwidth to pick fights over accessibility, so when things weren’t accessible, we just didn’t 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 – but they didn’t. 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 the 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 forty pounds on my back I had a hard time picking him up.
My next solution was Crossfit – if he was going to get heavier and still need to be carried, I would just have to get stronger to keep being able to lift him. I love being strong – but I was wrong in thinking that I could powerlift a solution to his need to interact with the world.
As Americans 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’s entire life, but it’s still up to us to figure out whether or not 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’ve given up on being a bulldozer mom, I’m learning how to be more assertive about accessibility needs, and at the same time 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-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-19 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’s in scenarios like these – where the potential for harm is high, but the pushback on accommodations is frequently hostile – that I don’t have any good guidance to give him.
The curb-cut effect, a phrase coined by Angela Glover Blackwell, a civil rights advocate, 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 – the small ramps built into sidewalks to allow for wheelchairs to roll smoothly down – make 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.
Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program. She is active in advocating for disability rights and home- and community-based services.