JUdy Heumann, a prominent activist who helped push through legislation protecting the rights of people with disabilities, has died at the age of 75.
News of her death in Washington, DC on Saturday was released on her website and social media accounts and was confirmed by her youngest brother, Rick Heumann.
He said she was in the hospital for a week and has heart problems that may be the result of something called post-polio syndrome, which is linked to a childhood infection so severe that she spent several months in an iron lung and lost it Able to run at 2 years old.
She spent the rest of her life struggling, first to gain access for herself and then for others, her brother recalled.
“It wasn’t about fame at all for my sister or anything. It was always about how she could make things better for other people,” he said, adding that the family took solace in the tributes pouring in on Twitter from dignitaries and past presidents like Bill Clinton and Barack Obama.
Heumann has been called the “mother of the disability rights movement” for her longstanding advocacy for disabled people through protests and legal action, according to her website.
Continue reading: Judith Heumann, TIME Woman of the Year, 1977
Illustration by Jason Seiler for TIME; HolLynn D’Lil/Get real in 24 days
She lobbied for legislation that eventually led to the federal Americans with Disabilities Act, the Disability Education Act, and the Rehabilitation Act. She served in the Clinton administration from 1993 to 2001 as Assistant Secretary of the United States Office of Special Education and Rehabilitation.
Heumann was also involved in the adoption of the UN Disability Rights Convention, 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 has 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, says their website.
Born in Philadelphia in 1947 and raised in New York City, Heumann co-wrote her memoir Being Heumann and a young adult version called Rolling Warrior.
Her book tells the struggle of her parents, German-Jewish immigrants who survived before the Holocaust, as they tried to get their daughter a place at school. “Children with disabilities were viewed as hardships economically and socially,” she wrote.
Rick Heumann said his mother, whom he described as a “bulldog,” initially had to homeschool his sister. The experience of fleeing Nazi Germany left a passion in the parents and their children.
“We firmly believe,” he said, “that discrimination in any form is wrong.”
Judy Heumann graduated from high school and earned 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 how much has changed, said Maria Town, president and CEO of the American Association of People with Disabilities.
Continue reading: 30 years after a pioneering disability law, the fight for accessibility and equal rights continues
“Today, children with disabilities are expected to go into general education, give us a chance to go to high school, go to college and get those degrees,” Town said, acknowledging that injustices persist consist. “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 also featured in the 2020 documentary Crip Camp: A Disability Revolution, which highlighted Camp Jened, a summer camp Heumann attended that helped ignite the disability rights movement. The film was nominated for an Oscar.
In the 1970s, she won a lawsuit against the New York Board of Education and became the first teacher in the state to be able to work in a wheelchair, which the board had tried to claim was a fire hazard.
Heumann protests in 1977.
Vince Maggiora – San Francisco Chronicle/Polaris
She also led a historic, nonviolent occupation of a federal building in San Francisco in 1977 that paved the way for passage of the Americans With Disabilities Act, which went into effect in 1990.
Town, who has cerebral palsy, said Heumann was the one who suggested she use a mobility scooter to get around more easily. She wasn’t ready to hear it at first, after a lifetime of being told she needed to appear less disabled. Eventually, however, she decided to give it a try.
“And it literally changed my life,” Town said. “And that was part of what Judy did. She has really helped people to accept themselves as disabled people and to be proud of that identity. And she has helped so many people understand their own power as disabled people.”
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