Judy Heumann, known as the “mother of the disability rights movement”, dies at the age of 75

Judy Heumanna prominent activist who helped push through laws protecting the rights of people with disabilities has died at the age of 75.

News of her death on Saturday in Washington, DC was released on her website and social media accounts, and was confirmed to The Associated Press by her youngest brother, Rick Heumann.

He said she was in 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.

Obituary Judy Heumann
The “mother of the disability rights movement,” Judy Heumann (December 18, 1947 – March 4, 2023) lost her ability to walk at age 2 after contracting polio.

Susan Ragan/AP

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 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 from the tributes pouring in on Twitter to dignitaries and former presidents like Bill Clinton and Barack Obama.

President Joe Biden recalled working with Heumann, whom he described as a “pioneer” to advocate for the rights of people with disabilities.

“Judy Heumann was a trailblazer — a warrior on wheels — for disability rights in America,” Mr. Biden said in a statement. “After her principal said she could not enter kindergarten because she used a wheelchair, Judy dedicated the rest of her life to fighting for the inherent dignity of people with disabilities.”

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.

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.

Mr. Biden called those laws “pioneering achievements that have improved access to education, jobs, housing and more for people with disabilities,” adding that Heumann “also served in leadership positions in two presidential administrations and started several disability advocacy organizations.” , which continue to benefit people here and around the world.”

Heumann was also involved in the adoption of the UN Disability Rights Convention, which was ratified in May 2008.

2022 Women's Entrepreneurship Day Organization Summit
Judy Heumann attends the United Nations Women’s Entrepreneurship Day Organization Summit on May 20, 2022 in New York City.

Getty Images

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 truly 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.

“Today, kids with disabilities are expected to get us into general education, give us a chance to go to high school, go to college and get those degrees,” Town said, but acknowledged that injustices 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 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.

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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