Judith Heumann, ‘mother’ of disability rights movement R.I.P

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Activist Judith Heumann, who worked for the rights of disabled people for over five decades, including under two presidential administrations, died Saturday at 75, her team confirmed.

Heumann required the use of a wheelchair from an early age due to polio. In 1970, she was denied a teaching license in New York City, with city officials arguing her wheelchair was a fire hazard.

She brought a discrimination lawsuit against the city that was eventually settled and she became the first wheelchair user to teach in the state.

In the 1970s, Heumann attended Camp Jened, a summer camp in upstate New York for disabled teens, many of whom would go on to lead the disability rights movement. The story was later chronicled in the 2020 documentary “Crip Camp,” produced by Barack and Michelle Obama.

A few years later in 1977, Heumann led a sit-in that sought to pressure then-Secretary of Health, Education and Welfare Joseph Califano to sign Section 504 of the Rehabilitation Act of 1973, establishing the first federal civil rights protections for disabled Americans.

The so-called 504 Sit-Ins took place at federal offices in several U.S. cities, including Boston, Seattle, Denver, Los Angeles, New York and Philadelphia. The San Francisco demonstration, led by Heumann, remains the longest peaceful occupation of a federal building in American history, lasting 25 days. Califano relented and signed the regulation that April.

Heumann would go on to serve as Assistant Secretary of the Office of Special Education and Rehabilitation Services for the duration of the Clinton administration, and was appointed the State Department’s Special Advisor on International Disability Rights by President Obama.
She co-authored both a 2020 memoir, “Being Heumann,” and a 2021 version for young readers, “Rolling Warrior.”

Heumann’s cause of death was not disclosed.

Within the disability rights community, Heumann was known for fostering and encouraging future generations of leaders, particularly younger disabled women. The 19th interviewed five of Heumann’s friends and mentees about her legacy and impact.

Ari Ne’eman, 35, is a doctoral candidate at Harvard, studying health policy. He co-founded the Autistic Self-Advocacy Network, one of the largest organizations run by and for autistic adults in the United States. He and Heumann were close friends — she gave one of the traditional seven Jewish blessings at his wedding.

“She was someone you could always call and shoot the breeze with, someone who always wanted to know what was going on in your life,” Ne’eman said, noting that her interest was genuine.

“D.C. is a town that is very frequently transactional,” he continued. “Judy wasn’t one to approach relationships from a transactional perspective. She was a connector. She wanted people who wanted similar things to be connected with one another. But it was very easy to talk about nothing specific and leave the conversation feeling very happy.”
He recently interviewed Heumann for a forthcoming book on disability history in the United States. During that interview, he asked Heumann how she wanted to be remembered by historians.

He shared the recording with The 19th, and in it, Heumann stressed that she wanted to be remembered as a “fighter for the rights of disabled people,” but also emphasized the need for the movement to remain dynamic.
“I believe more and more that our movement can’t be isolated. That we need to be part of a changing world. We have to look at issues like global warming and the environment. I think you have to be in a position where you’re ahead of the game and not trying to catch up to a game that keeps changing,” Heumann said

Taryn Williams, 41, is assistant secretary of the Office of Disability Employment Policy, an agency within the Department of Labor. She is one of many disabled leaders whose careers were encouraged and guided by Heumann.
“[Judy Heumann] was a consistent source of advice and support as I navigated my career in disability policy. But I should note, there are many, many of us who benefitted from her extraordinary leadership,” she told The 19th.

Maria Town, 35, is president of the American Association of People with Disabilities and served in the Obama administration. She was born with cerebral palsy, a developmental disability that impacts her mobility.
“Judy had an impact on everyone she interacted with, from every kind of organization she engaged with … There are so many people who got their start because of Judy, who met their mentors because of Judy,” Town said.

“Judy would call me at all hours of the day. She wanted to know about my thoughts on issues. She wanted to borrow my lipstick,” Town said.

Heumann encouraged Town to be confident in her own power.

“When I was first starting out working in the White House, I was so overwhelmed and had so much imposter syndrome. And then I talked with Judy, and she said I had the skills to do this. I’d say things like, ‘I’m not a big deal,’ and Judy would say, ‘No, you are.’ She would not accept me minimizing my own ability,” Town said.

Claudia Gordon, 50, is deaf and served in multiple roles during the Obama administration. She is now a senior accessibility strategist at T-Mobile. In September, President Joe Biden appointed Gordon the vice chair of the National Council on Disability.

Gordon does not remember the first time she met Heumann but says it was during Gordon’s first years as a student at Howard University.

“I can’t remember my life without Judy in it,” Gordon said. She described her relationship with Heumann as, “like that of a big sister or a caring mom.”
“She took great interest as well as pride in my career progression. At times we’d be in the midst of a conversation in her kitchen when she would pull out her phone, place a call or send an email to someone on my behalf,” Gordon said

Rebecca Cokley, 45, is the U.S. disability rights officer for the Ford Foundation and served multiple roles in the Obama administration. She was born with achondroplasia, a common, hereditary form of dwarfism. Her parents also had dwarfism, and her family has a rich legacy in the disability community

Her relationship with Heumann was not always smooth — sometimes there were disagreements.
“We had a period where we didn’t talk for a couple years because I thought she was completely wrong about something tied to how we demonstrate cross-movement solidarity and I told her so, in a meeting. It served to make me even more committed to working in a different way than Judy did. When we reconciled, she asked if I changed my mind and I told her, ‘No, I’m doubling down on thinking you were/are wrong.’ And her response was, ‘Fine, when can we take the kids to the zoo?’ And that was it,” Cokley said.

In terms of Heumann’s legacy, Cokley pointed out that Heumann never retired.

“I want people to remember that this is the first real generation of elders in the disability community. Those that came before them died much younger, often homeless or institutionalized. And many of our elders today, like Judy, have to keep working, long after their non-disabled peers have retired. Our elders don’t have well-funded retirement plans, don’t have pensions, because they were too busy fighting for our rights, and federal policy often prohibits their ability to save money. And even if they did have pensions or 401(k)s, they won’t cover their need for home care. So they can’t stop working until they die. And we should be embarrassed and enraged by that,” Cokley said