WWhen I learned that lifelong disability rights activist Judy Heumann had died, I felt uneasy in a way I struggle to explain. It sounds like a big thing to say, but Judy’s presence on this planet changed the world.
Ever since I first learned about Judy, I’ve been baffled and fascinated by her unwavering belief that she belonged, mostly because I’ve always struggled to believe that she did. Judy was disabled by polio around the same age that I was disabled by childhood cancer – both as toddlers. But growing up in 1950s Brooklyn, Judy grew up in a world she never expected to be a part of. When her mother wheeled Judy up the stairs to their neighborhood school in her wheelchair, Judy was wearing her first day of school dress, the administrator told her that Judy could not be a student there. was a fire hazard. After a long argument, Judy was allowed into a classroom in the basement of the public school with a group of other special needs children ages 9 to 21. They did worksheets, took a nap at their desks, and if they made it to graduation, they had to go work in a sheltered lab. It was as if the world had handed Judy the script for the story we were all playing together, casting her as the helpless invalid, relegated to the sidelines.
Judy glanced at the script and 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 a 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 her, not the other way around. What kind of man comes into the world with such audacity?
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I grew up in Kansas in the 1990s. I was able to go to school with my peers. There were curb cuts, accessible parking spaces and a ramp to the library. Still, I struggled to believe that I belonged. One of my earliest memories is a school party at an ice rink. I had just gotten my first wheelchair. It was hot pink and I was proud. The place 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 join. Of course we left. I felt foolish forever to assume that I belonged there too.
I learned to avoid situations for inclusion. When my class went on a field trip to an outdoor day camp, I stayed home. I was the first chair flautist in middle school, but when everyone joined the band in high school, I stopped playing the flute altogether. Despite my flair for the dramatic, I wouldn’t even consider trying out for a school play. of course the tent 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 back off – to avoid the stares or the blind eyes or the awkward solutions and just stay home. Even today, it can be difficult to maintain a story that you belong here as a person with a disability.
Judy believed in her own story of belonging so deeply that she asked for it to become 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 she was denied a teaching certificate because she couldn’t walk. When she was forcibly removed from the plane for traveling without a support person to help her get on and off the plane, she sued the airline. In 1977, after years of waiting for the administration to sign regulations for Section 504 of the Rehabilitation Act (a bill that would make it illegal for any institution receiving federal funding to discriminate against someone because of their disability), Judy led a group of more than 150 dedicated protesters entered a federal building and together refused to leave. Week after week, she was offered compromises that would have been easy to make – and she didn’t take any of them. After almost a month, they finally got the signature they needed. Her relentless resistance along with her fellow protesters led directly to the Americans with Disabilities Act, one of the most comprehensive pieces of civil rights legislation for people with disabilities in the world. This legislation was signed into law when I was 4 years old.
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Despite her influence on my life, it wasn’t until I was in my 30s that I finally learned about Judy. Reading about her struggle for inclusion made me see myself differently. I could hear her deep and defiant voice refusing to get off the plane seat or answering powerful government officials and feel completely human – a person who deserved to be in the party, the stage, the band like no other. I was part of a struggle – a story – that extended far beyond me.
Judy’s story literally changed the landscape of the world, but the script that set it on fire didn’t just disappear. The status quo still has so much momentum, and rewriting the history of disability for an entire society requires relentless care and persistence. In 2017, there was a push in Congress to reduce some of the ADA’s power 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 twice as likely to be unemployed as our non-disabled counterparts. One in four American adults has some kind of disability, but our lives are rarely shown on film or television. When stories of disability appear on screen, they are still often shaped by writers, directors, producers and actors who do not share that experience, a setting that often leads to harmful misrepresentations. Portrayals of people with disabilities as tragedies, villains, or burdens on their community shape public perceptions of real people. Judy spent her whole life pushing against all of this.
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The tightness in my chest when I learned of Judy’s death was fear. What will happen to the story of belonging to us without Judy’s bold voice?
I had the opportunity to meet Judy a few years ago. I tuned into a panel he was on and watched in real time as he commanded the conversation, even from a Zoom screen. Her vision of what the future could be – a world where everyone is included – was so clear and vivid. We spoke on the phone a few times after that, her voice always strong, steady, unyielding. A few months ago, I received another call from her. She left a short message and I called her and left a message of my own, but I never found out why she called that day. The conversation we never had will always be an empty vessel in my mind, a void to speculate. But I still hear her voice in my head. I imagine many of us can. I believe her story, her voice, will grow stronger with time, because the story she brought us is true. We belong, we belong, we belong here. And he already showed us: We can do impossible things together. We can build a world where everyone belongs. It’s not too much to ask.
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