Judy Heumann Was Not A Tragedy

It's better-late-than-never to learn about the disability rights movement

This Saturday, the celebrated disabled activist Judy Heumann died, at age 75. The New York Times ran her obit. Writers and thinkers on disability, like Alice Wong and Lucy Webster, paid her tribute. In Webster’s newsletter, The View From Down Here, she memorialized Heumann by listing her accolades and sharing some of her best quotes, including this one, that perfectly explains the “social-constructivist model” of disability - that people don’t carry around disabilities like a tote bag, but, rather, that it is society that disables certain individuals and not others:

“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings…It is not a tragedy to me that I'm living in a wheelchair.” - Judy Heumann

Heumann, who is in every way a super-star civil rights leader worthy of children’s books and national holidays, only entered my consciousness when I first saw the 2020 documentary Crip Camp, which, if you haven’t seen it, well, do. (Netflix has offers the movie free on Youtube). The National Education Association honored Heumann in 2021, detailing her successful lawsuit to become the first teacher who used a wheelchair in New York City, her work for Presidents Clinton and Obama on behalf of education and disability rights, and how a child who was was turned away from Kindergarten because she was deemed a “fire hazard” became a critical figure in the nation’s education system.

After taking in the power of Heumann’s leadership and the extent of her conviction, the thing that strikes you most about Heumann’s leadership, and the spirit of the disability rights movement at that time, as portrayed in Crip Camp, is the joy and collectivness. In the 1977 occupation of San Francisco City Hall that the movie details in a thrilling arc, there are tears and suffering but there is also singing, laughing, bubble blowing, and creative community-making. When the FBI turns the hot water off to fuck with the protesters, the owner of a local lesbian bar comes in with a makeshift salon and offers shampoos to the disabled activists who have gone days without a shower. The Black Panthers bring hot meals. Disabled people, a wide-ranging group, delight in meeting each other for the first time, as a new unified group. After the telephone lines are deliberately cut off, deaf folks realize they can still communicate with outside allies through signing in the windows.

To honor Heumann, I showed this 35-minute segment of Crip Camp to my seven-year-old son yesterday. The clip, which is as riveting as Everything Everywhere All At Once, fresher than The Fabelmans, and easier to follow than Elvis (can you tell I’m excited about the Oscars?), shows the long fight, beginning with that 1977 sit-in, to get Section 504 enforced and, eventually, in 1990, The Americans with Disabilities Act (ADA) passed. I show this clip to my graduation students, because I don’t think anyone should get an education degree without knowing the history of special education (along with Crip Camp, this article is a great start). I wanted to show it to Max (and I encourage you to watch and discuss it with children or students) because I want him to see the doggedness and creativity of these activists, as well as ADA’s impact on society. I want him to understand that disabled folks have played a huge role in American history, that they can be heroes, not in the way we often ascribe to the disabled, not despite their disabilities, but because of them.

Heumann’s tongue is sharp and her smile is infectious. Every child in America should know who she was and what she did and why and how her fight still continues. She tells a group of organizers, after they realize that demanding Section 504 have teeth was not enough, and begin campaigning for the Americans with Disabilities Act, “If I have to feel thankful about an accessible bathroom, when am I ever gonna be equal in the community?” Everyone laughs, the way you do when you recognize yourself in a joke and it gives you relief. And again, the beauty of that community is seen, when Judy falters, overcome with emotion, voices offscreen shout out “that’s alright, we’re behind you.”

The same day Heumann’s death was announced, on the other side of the country, the filmmaker Reid Davenport was accepting an Independent Spirit Award for his artful documentary, I Didn’t See You There, which premiered at last year’s Sundance Film Festival and was filmed entirely from cameras attached to his wheelchair. In his acceptance speech, Davenport told the crowd, “There are so many disabled artists trying to get into this industry, who have not been given a chance. I ask you, my esteemed colleagues, to let them in. It’s time.” The audience reacts by giving him a standard ovation and a lot of hoots and hollers. Brilliant hottie Sharon Horgan claps enthusiastically in a whimsical red dress.

At my son’s school in Oakland, 20% of the students receive special education services (more than the district average - we house a large program). At a PTA meeting a few months ago, one of those kiddos, a third grader, grabs the mic and says “I think there should be a club for kids to learn about Autism and ADHD!” People clap. A parent reads a book about Autism, All My Stripes, to my son’s first-grade class, and tells me that a kid comes up to her afterwards and gives her a big hug. My son apparently tells the class that his mom has ADHD. At the Black Excellence Showcase a few weeks ago, my son’s Autistic classmate, clad in his sound-dampening headphones, recites “I Am Enough” with the other students, smack in the middle of the group, not off to the side. Our neighbor, who gets around on a motorized scooter, comes to the performance with us and settles herself in at the end of a row.

The world is still a very disabling place for those whose minds or bodies operate differently than what we have decided is the “norm” (my son recently corrected me by saying “there’s no such thing as normal!” Good boy). Even at a school that implements the inclusion of disabled and neurodivergent children well, there can be disenfranchisement and segregation. But none of these moments would have been possible without Judy Heumann and others like Ed Roberts, the “father of independent living,” who helped our society begin to understand that the right to access, connect, learn, and enjoy life, is a human right.

And what a delight it is that there is room, more and more, not only for activism but for disabled art, and art that explores the textured and varied worlds of huge pockets of our population that haven’t, in the past, garnered much interest from the tastemakers that be. For filmmakers like Reid Davenport and Ella Glendining. For writers like Alice Wong and Andrew Leland, thinkers like Sunaura Taylor and Quincy Hansen, poets like Sid Ghosh and Hannah Emerson.

The disabled world is mourning what Lucy Webster referred to as their “matriarch.” But Judy Heumann should be known and missed by everyone. Her name should be on all of our lips. We should all be out in the street, singing protest songs, sharing a collective grief but also so, so much gratitude that our lives benefited so much from hers. If you want to learn more about her, check out Peter Torres Fremlin’s round-up of Heumann’s best-of media, including her appearance on The Daily Show. Stream her memorial service this Wednesday and get what I imagine will be an inspiring crash course in disability activism.

And please, teach the children in y our lives about Heumann. Disabled history is OUR history.

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Also, this:

In local sad-but-beautiful news, a few weeks ago, the First African Methodist Church (FAME), the SF East Bay’s oldest Black church, experienced a huge fire that decimated the building. FAME is also the immediate neighbor of my daughter’s preschool, and does an incredible amount of work with Oakland’s unhoused population. On the way to and from school, we often meet folks who are waiting for meals or just gravitating around a welcoming space. The beautiful part is that Oakland’s Temple Beth Abraham offered space for the congregation to hold their services, sparking this local news story (you can also see the temple in this awesome hype-video made by the Reverend, with P. Diddy in the background). You can donate to FAME’s rebuilding fund here.