Rest in Power: Judy Heumann, a Tireless Organizer for Disability Rights

Heumann never saw disability as tragedy—but saw barriers and denials as cause for rebellion.

Judith Heumann, advocate for disability rights and an official at Center for Independent Living, on May 15, 1980. (Vince Maggiora / San Francisco Chronicle via Getty Images)

On Sunday, March 4, the world lost a fierce, funny, tireless organizer for disability rights with the death of Judith Ellen “Judy” Heumann.

If you live in the United States and know a child—or were one—with an Individual Education Plan (IEP) or “504” in school, or you enter a building with a ramp or Braille signage, you’re seeing the impact of her life; though that’s only the beginning. An author, podcaster, proud Brooklynite, polio survivor and special advisor to the State Department on Disability Rights under the Clinton and Obama administrations, Heumann was a “badass” disability activist. She never saw disability as tragedy, but saw barriers and denials as cause for rebellion.

Born in 1947, Heumann credited her parents, who escaped Nazi Germany, with teaching her that fighting for your rights was the right thing to do. This began with her mother’s fight to enroll Judy in kindergarten, which the principal blocked, saying that if she couldn’t walk she would be “a fire hazard.”

In her teen years, Judy Heumann continued to find radical allies, working as a counselor at Camp Jened in the Catskills—a camp for disabled children with a hippie vibe and a philosophy emphasizing capacity, individuality, listening and openmindedness. Heumann, a wheelchair user after surviving polio as a young child, was one of many campers and counselors who discovered and forged disability pride as “Jenedians.” She and others became disability rights activists, as documented the 2021 Oscar-nominated film Crip Camp: A Disability Revolution, co-directed by fellow Jenedian Jim LeBrecht and streamed on Netflix.

In 1970, when Heumann earned her teaching qualifications but was denied a teaching license, she sued the New York State Department of Education—“the first such civil rights suit ever filed in a federal court,” according to the New York Times. When the case was finally settled, Heumann became the first teacher in New York state who used a wheelchair.

The determination to ensure opportunities for people fired solely on the basis of disability fueled her at every stage. While earning her master’s degree at the University of California, Berkeley, Heumann joined Ed Roberts and other activists in starting the Independent Living Movement, and the bimah of the Berkeley synagogue she attended was made accessible for her.

Heumann was still in her 20s when her organization, Disability In Action, shut down rush hour traffic on New York’s Madison Avenue, protesting President Nixon’s veto of the Rehabilitation Act. Nixon eventually signed the act in 1973, but by 1977, its Section 504—key to setting regulations for the actual enforcement of anti-discrimination in education and workplaces—still languished and seemed likely to be removed entirely. Protests were organized in a dozen cities around the country, with Heumann and lesbian disability activist Kitty Cone organizing what became the most effective: the occupation, for almost a month, of the Department of Health, Education and Welfare in San Francisco.

Following the models of the women’s movement and civil rights movement, Heumann led nightly strategy sessions. Coalition work and disability ingenuity kept their occupation focused and strong, with occupiers fed thanks to connections to the local Black Panthers, the Chicano group Mission Rebels and others.

Officials cut off water lines, but local lesbian bar owners provided shampoo. Phone lines were cut off, but the Gay Men’s Butterfly Brigade smuggled in walkie-talkies, and deaf occupiers stood at the windows, relaying in ASL—which Heumann called “the perfect secret weapon”—the group’s public statements and demands.

Solidarity and disability strengths—not deficits—was always Heumann’s message. On April 28, 1977, the secretary for health and human services signed Section 504. The measure only covered federally funded institutions and activities, but it prepared the way for broader protections in the private sector and other public services through the Americans with Disabilities Act of 1990. We have Judy Heumann’s leadership to thank.

It was a very important provision because it would mean, for example, that you could not discriminate against someone with a disability in preschool, in elementary school, in high school, at universities, in hospitals, in government. And if in fact discrimination occurred, you would have a remedy. You could go to court. You could file a complaint.

Judy Heumann

Heumann went on to work for global disability rights through the State Department and the Ford Foundation, and she became the World Bank’s first adviser on disability and development. Flying often for work and for love of travel, she became adept at using social media to praise airline and airport workers who allowed her to travel smoothly and with dignity—often posting smiling selfies with them—while calling out the mishandling of mobility devices and their users when things went wrong.

Judy Heumann (L) and Coco Rocha at the 2022 Women’s Entrepreneurship Day Organization Summit at United Nations on May 20, 2022, in New York City. (Chance Yeh / Getty Images)

In all of her work, Heumann also remained mindful that disability never meant just one thing. She was careful to remind those working on disability issues that disabilities are infinitely varied, and many are invisible. In the process, she emphasized the importance of stories in exposing barriers and promoting change.

In 2020, Heumann published, with Kristen Joiner, the memoir Being Heumann (2020), followed by a YA version in 2021, Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution.

As tributes pour in, the words you will see most often are: fierce, champion and mentor. Many much younger activists recall her checking in by phone despite an exhausting schedule, calling from a cab somewhere just to see how they were doing. Her work with and connection to young disabled artists and activists is rich and multifaceted. (Check out her podcast and video podcast, The Heumann Perspective, to see just how active she has been in collaborating and promoting the work of others.)

Her work for social change has led to many awards and honors, but it is the relationships forged and the achievements made in disability justice for which she will be most remembered. If you want to work for change, take her advice:

“When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with.”

May her memory be a blessing.

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Susan G. Cumings teaches in the Writing and Critical Inquiry Program at UAlbany (SUNY). Her recent publications include chapters in Emerging Aesthetic Imaginaries, (Rowman & Littlefield) and The Image of Disability: Essays on Media Representations, (McFarland), and she is a featured speaker in the Discovery+ documentary CRUTCH (2020), about disabled dancer/activist/performance artist Bill Shannon.