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Judy Heumann, a renowned activist who helped secure legislation protecting the rights of disabled people, has died at age 75.
News of her death Saturday in Washington, D.C., was posted on her website and social media accounts and confirmed by the American Association of People with Disabilities.
Heumann’s exact cause of death wasn’t immediately known. She had been in the hospital about a week but had expected to go home, said Maria Town, the association’s president and CEO.
“Beyond all of the policy-making and legal battles that she helped win and fight, she really helped make it possible for disability to not be a bad thing, to make it OK to be disabled in the world and not be regarded as a person who needs to be in a separate, special place,” Town said.
Heumann, who began using a wheelchair after contracting polio at the age 2, has been called the “mother of the disability rights movement” for her longtime advocacy on behalf of disabled people through protests and legal action, her website says.
She lobbied for legislation that eventually led to the federal Americans with Disabilities Act, Individuals with Disabilities Education Act and the Rehabilitation Act. She served as the assistant secretary of the U.S. Office of Special Education and Rehabilitation Services, beginning in 1993 in the Clinton administration, until 2001.
Heumann also was involved in the passage of the United Nations Convention on the Rights of Persons with Disabilities, which was ratified in May 2008.
She helped found the Berkley Center for Independent Living, the Independent Living Movement and the World Institute on Disability and served on the boards of several related organizations including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion and the United States International Council on Disability, her website says.
Heumann, who was born in Philadelphia in 1947 in Philadelphia and raised in New York City, was the co-author of her memoir, Being Heumann and a version for young adults titled, Rolling Warrior.
Her book recounts the struggle her parents experienced while trying to secure a place for their daughter in school. “Kids with disabilities were considered a hardship, economically and socially,” she wrote.
She went on to graduate from high school and earn a bachelor’s degree from Long Island University and a master’s degree in public health from the University of California, Berkeley. It was groundbreaking at the time, which shows just how much has changed, Wall noted.
“Today the expectation for children with disabilities is that we will be included in mainstream education, that we will have a chance to go to high school, to go to college and to get those degrees,” Town said while acknowledging that inequities persist. “But I think the fact that the primary assumption has changed is a really big deal, and I also think Judy played a significant role.”
She was featured in the 2020 documentary film Crip Camp: A Disability Revolution, which highlighted Camp Jened, a summer camp Heumann attended that helped spark the disability rights movement. The film was nominated for an Academy Award.
In a 2021 interview with The Hollywood Reporter, Heumann called on Hollywood to talk with disabled people whenever considering narratives about and inclusive of disability.
“They need to be bringing disabled people to the table in the development of their materials, and they need to be hiring disabled people for a part or all aspects of the work,” she said. “Ultimately, it’s not just about looking at more Crip Camps and more films on disability, but it’s really also about understanding that disabled people, both on the sets and off, have much to contribute around disability, but also in general.”
She was also attached to executive produce an adaptation of her best-selling memoir for Apple Original Films, which was set to be directed by CODA helmer Siân Heder and produced by John Beach, Kevin Cleary, Alex Astrachan and David Permut along with his Permut Presentations.
During the 1970s she won a lawsuit against the New York Board of Education and became the first teacher in the state who was able to work while using a wheelchair, which the board had tried to claim was a fire hazard.
She also was a leader in a historic, nonviolent occupation of a San Francisco federal building in 1977 that set the stage for passage of the Americans With Disabilities Act, which became law in 1990.
Town, who has cerebral palsy, said Heumann was the one who suggested she use a mobility scooter to make it easier to get around. She wasn’t ready to hear it at first after a lifetime of being told she needed to appear less disabled. Eventually, though, she decided to give it a try.
“And it’s literally changed my life,” Town said. “And that was part of what Judy did. She really helped people accept who they were as disabled people and take pride in that identity. And she helped so many people understand their own power as disabled people.”
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