When I learned that lifelong disability-rights activist Judy Heumann had passed away, I felt anxious in a way I struggled to explain. It sounds like a grand thing to say, but Judy’s presence on this planet changed the world.
Since I first learned about Judy, I’ve been baffled and mesmerized by her unwavering belief that she belonged, mostly because I’ve always struggled to believe that I do. Judy became disabled by polio around the same age I became disabled by childhood cancer – both of us as toddlers. But raised in 1950s Brooklyn, Judy grew up in a world that never expected her to join it. When her mother hoisted Judy up the staircase to their neighborhood school in her wheelchair, Judy wearing her first-day-of-school dress, the administrator told her Judy couldn’t be a student there; she was a fire hazard. After a long fight, Judy was allowed into a public-school basement classroom with a group of other disabled kids ages 9 to 21. They did worksheets, took naps at their desks, and, if they made it to graduation, were expected to go work in a sheltered workshop. It was like the world handed Judy the script for the story we’re all playing out together, assigning her to the role of helpless cripple, relegated to the margins.
Judy glanced at the script, then set it on fire. She seemed to know in her bones that she deserved to be included. Disability is not an inherent tragedy or broken version of a whole life, but another form of human variation. Even as a child, she lived in a story of her own making, and she expected the world to bend to it, not the other way around. What kind of human comes into the world with that kind of audacity?
I grew up in 1990s Kansas. I was able to go to school with my peers. There were curb cuts, accessible parking spaces, and a ramp up to the library. Still, I struggled to believe I belonged. One of my earliest memories is a school party at a roller-skating rink. I’d just gotten my first wheelchair. It was hot pink, and I was proud. The space was dark with neon lights. The music was loud. And my dad was arguing with the staff. His nostrils flared as he insisted it was perfectly safe to take me out on the rink in my chair. They insisted it wasn’t. We didn’t have to leave the party; we just couldn’t participate. Of course we left. I felt silly for ever assuming I belonged there too.
I learned to avoid occasions for sideline inclusion. When my class went on a field trip to an outdoor day camp, I stayed home. I was the first-chair flute player in middle school, but when everyone joined the marching band in high school, I quit the flute entirely. Despite my flair for the dramatic, I wouldn’t even think of trying out for a school play; of course the stage was inaccessible. In retrospect, I could have insisted they find a way to include me. But even now, I know how much easier it is to retreat – to avoid the stares or the eye rolls or the awkward workarounds and just stay home. Even today, it can be difficult to hold onto a story that you belong here as a disabled person.
Judy believed in her own story of belonging so deeply that she demanded that it be made a reality, for herself and anyone else with a disability. She went to college to become a teacher and sued the New York City Board of Education when they denied her a teaching certificate because she couldn’t walk. When she was forcibly removed from a plane for traveling without a support person to help her on and off the aircraft, she sued the airline. In 1977, after years of waiting for the government to sign regulations for Section 504 of the Rehabilitation Act (a piece of writing that would make it illegal for any institution receiving federal funding to discriminate against someone for their disability), Judy led a group of more than 150 dedicated protestors into a federal building, and together, they refused to leave. Week after week, she was offered compromises that would have been easy to take – and she took none of them. After nearly a month, they finally got the signature they needed. Her unrelenting resistance alongside her fellow protesters led directly to the Americans with Disabilities Act, one of the most comprehensive pieces of civil rights legislation for disabled people in the world. That legislation was signed into law when I was 4.
Despite her influence on my life, it wasn’t until my 30s that I finally learned about Judy. Reading about her fight for inclusion made me see myself differently. I could hear her deep and defiant voice refusing to get out of her airplane seat or speaking back to powerful government officials and feel fully human – a person who deserved to join the party, the stage, the band as much as any other person. I was part of a struggle – a story – that stretched far beyond me.
Judy’s story literally changed the landscape of the world, but the script she set on fire didn’t just disappear. The status quo still carries so much momentum, and rewriting the story of disability for a whole society takes relentless tending and insisting. In 2017, there was a push in Congress to diminish some of the power of the ADA through the so-called ADA Education and Reform Act. People with disabilities experience higher rates of poverty and incarceration, are far less likely to attend college, and are two times as likely to be unemployed as our nondisabled counterparts. One in four Americans adults has some kind of disability, but our lives are rarely represented in film or on television. When stories of disability do appear on screen, they are still often shaped by writers, directors, producers, and actors who do not share that experience, a setup that frequently leads to harmful misrepresentations. Depictions of disabled folks as tragedies, villains, or burdens on their community shape public perceptions of real people. Judy spent her entire life pushing against all of this.
The tightness in my chest when I learned of Judy’s death was fear. What will happen to the story of our belonging without Judy’s bold, bellowing voice?
I had the chance to meet Judy a few years ago. I moderated a panel she was on and watched in real time as she commanded the conversation, even from a Zoom screen. Her vision for what the future could be – a world where everyone is included – was so clear and vivid. We talked on the phone a couple of times after that, her voice always strong, firm, adamant. A few months ago, I got another call from her. She left a brief message and I called her back and left a message of my own, but I never learned why she called that day. The conversation we never had will always be an empty container in my mind, a blank to speculate against. But I can still hear her voice in my head. I imagine a lot of us can. I believe her story, her voice, will only grow stronger with time, because the story she brought us is true. We belong, we belong, we belong here. And she already showed us: We can do impossible things together. We can make a world where everyone belongs. It’s not too much to ask.
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