Judy Heumann, Pioneering Disability Rights Activist
She's Considered the Mother of Disability Rights and She's a 'Badass'
June 10, 2021
Editors Note: Many people in the disability community don’t know the name, Judy Heumann. She was featured in ‘Crip Camp‘ the documentary, an Academy Award-nominated film last year, and recently published a book, ‘Being Heumann‘ an unrepentant memoir of a disability rights activist. She is often called the mother of the disability rights movement.
Judy Heumann’s pandemic year started off extremely well. In late January 2020, she attended a Sundance screening of “Crip Camp,” a documentary about disabled young people — including her — who, after meeting at a Catskills summer camp run by hippies in the 1970s, went on to shape the disability rights movement and change federal law. It was a surprise hit and became an Oscar nominee for best documentary.
The following month, she published a memoir called “Being Heumann.” (She hadn’t known when the film would be released, so the timing was a coincidence.) Publishers Weekly hailed the book as “thoughtful and illuminating.”
Then, just days before the world shut down, Heumann — who has made her home in D.C. since 1993 — joined Trevor Noah on “The Daily Show.” At one point in the interview, Noah called her a “badass” and asked her about the time, in 1972, when she “decided to shut New York down” with a disability rights protest.
In the midst of their friendly exchange, however, Noah made a reference to “able-bodied” people — and Heumann doesn’t like that term. “I call you ‘non-disabled,’ ” she said with a smile, “because the likelihood of you acquiring a disability, temporarily or permanently, is statistically very high.” A slightly dazed look crossed Noah’s face. “Did you just threaten me?” he asked, deadpan.
If “Crip Camp” and Trevor Noah introduced Heumann to a wider audience, then it’s arguably about time. Susan Mizner, director of the American Civil Liberties Union’s Disability Rights Program, calls Heumann “the mother of the disability rights movement in so many ways” — an activist “who doesn’t take crap, never has.”
Unable to walk since before age 2 because of polio, Heumann, now 73, grew up in Brooklyn, where she felt championed by her parents. Werner and Ilse Heumann were German Jewish immigrants who lost family in the Holocaust. In the early 1950s they didn’t know about access for disabled kids, but they knew their daughter was going to school. When they took her for her first day, however, the school principal physically blocked them at the entrance, saying Judy was a fire hazard.
America then had no room for disability, and the Americans With Disabilities Act was still four decades away. Judy’s father worked long hours at a butcher shop, so the “day-to-day work of fighting fell on my mother,” Heumann writes in her book. “Telling Ilse Heumann that something wasn’t possible was a big mistake.” Dubbed Mighty Mite by her husband, Judy’s mother simply didn’t hear the word “no.”
As an adult, Heumann continued the fight her mother had started —for instance, suing the New York Board of Education when it denied her application to be a teacher. It was a lawsuit, she told me, that even the ACLU wouldn’t take back then. Yet when the case came before Constance Baker Motley, a civil rights pioneer turned District Court judge, she agreed to hear it. New York settled and gave Heumann a job.
Heumann laughs in discussing stories that back up her badass rep: shutting down traffic in Manhattan (to protest Richard Nixon’s veto of the 1972 Rehabilitation Act), getting hauled off an airplane by security (for insisting she had a right to her seat) and launching a sit-in at a federal building in San Francisco, with meals provided by the Black Panthers, to try to get a crucial section of the revived Rehabilitation Act enforced and end discrimination against people with disabilities.
From 2010 to 2017, Heumann served as special adviser on international disability rights at the State Department, working to make disability part of the department’s agenda and to pass an international treaty similar to the Americans With Disabilities Act. More than 180 countries have ratified the 2006 convention, but not the United States because of political division. How to get it ratified? You get around the ‘nos’ like her mother did, says Heumann. “You figure it out.”
New challenges continue to arise: The pandemic, Heumann, notes, has amplified the issues faced by many in the disabled community. For people who need help getting dressed, bathing, cooking or going to the bathroom, the coronavirus and the shutdown created “definitely a more difficult situation” by making it tougher to find helpers who could come into the home. Some disabled friends of Heumann and her husband, Jorge Pineda — who also uses a wheelchair because of a spinal cord injury — had to leave D.C. to live with family elsewhere.
At a Q&A after a Sundance screening of “Crip Camp,” someone asked: “Why didn’t we know this story?” In our conversation, that question brought Heumann back to her exchange with Trevor Noah, and a truth it revealed. She was taken up short when he pronounced himself “threatened,” but then saw an honesty in that. That’s because non-disabled people do feel threatened, she told me. “It’s one of the big reasons why really getting meaningful, engaged discussion” about disability is difficult. Most people avoid what they feel threatens them — what they don’t know.
At the Academy Awards, Heumann — wearing a custom Markarian silk suit — joined “Crip Camp” co-directors Jim LeBrecht and Nicole Newnham on the red carpet. Although they would, in the end, leave the Oscars without a statue, Heumann says the film “still won because it’s gotten where it is”: a top feature streaming on Netflix in 29 languages globally with subtitles for the deaf and hard-of-hearing, and audio description available in 15 languages.
And if seeing Heumann’s story on-screen brings viewers closer to understanding disability, then it wouldn’t be the first time she has changed minds: During a conversation this spring on her podcast, “The Heumann Perspective,” LeBrecht — who was a few years younger than Heumann when they met at Camp Jened — credited her with inspiring his activism. “You’re the reason I got involved with disability rights,” he said. “And that never left me, and it’s the reason that I didn’t want this story to be lost to history.”
Republished from the Washington Post Magazine
Listen to Mark, who is paralyzed with quadriplegia, say more about disability rights on our website.