Judy Heumann, a renowned and well-respected activist who helped create legislation to protect the rights of the disabled, has passed away at the age of 75.
News of her death Saturday in Washington, DC, was posted at her website and social media accounts and confirmed by her youngest brother, Rick Heumann.
He said his sister was hospitalized for a week and had heart problems that may have been due to post-polio syndrome, related to a childhood infection so severe that she spent several months in an iron lung and lost her ability to speak. walk at age 2.
She spent the rest of her life fighting, first for herself and then for others, her brother recalled.
“It wasn’t about glory for my sister or anything like that at all. It was always about how to make things better for other people,” he said, adding that the family took solace in the tributes pouring in on Twitter from dignitaries and former presidents such as Bill Clinton and Barack Obama.
“Judy Heumann was a pioneer — a rolling warrior — for disability rights in America,” said President Biden a statement. “After her principal told her she couldn’t go to kindergarten because she used a wheelchair, Judy devoted the rest of her life to fighting for the inherent dignity of people with disabilities.”
Heumann was widely regarded as the “mother of the disability rights movement” for her longstanding advocacy for people with disabilities through protests and legal action.
She lobbied for legislation that eventually led to the federal one Americans with Disabilities Act, Education Act for Persons with Disabilities and the Rehabilitation Act. She served as assistant secretary of the U.S. Office of Special Education and Rehabilitation Services beginning in 1993 in the Clinton administration, until 2001.
Heumann was also involved in the adoption of the United Nations Convention on the Rights of Persons with Disabilities, which was ratified in May 2008.
She helped found the Berkeley 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 Assn. of people with disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion and the United States International Council on Disability, according to its website.
Born in Philadelphia in 1947 and raised in New York City, Heumann was the co-author of her memoir, “Being Heumann,” and a young adult version titled “Rolling Warrior.”
Her book tells of the struggles her parents, German-Jewish immigrants who fled Europe before the Holocaust, experienced as they tried to secure a place for their daughter in school.
“Children with disabilities were considered a hardship, 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 the parents and their children with a passion.
“We truly believe,” he said, “that discrimination in any way is wrong.”
Judy Heumann graduated from high school with a bachelor’s degree from Long Island University and a master’s degree in public health from UC Berkeley. It was groundbreaking at the time, which shows how much has changed, says Maria Town, the president and CEO of US-based Assn. of people with disabilities.
“Today the expectation for children with disabilities is that we will be included in mainstream education, that we will have the opportunity to go to high school, go to college and get those degrees,” said Town, while he acknowledged that inequalities persist. “But I think the fact that the primary assumption has changed is a really big deal, and I also think Judy played an important role.”
She was also featured in the 2020 documentary film ‘Crip Camp: A Disability Revolution’, which highlighted Camp Jened, a summer camp Heumann attended that sparked the disability rights movement. The movie was nominated for an Academy Award.
In the 1970s, she won a lawsuit against the New York Board of Education and became the first teacher in the state to work while using a wheelchair, which the board had tried to argue was a fire hazard.
She was also a leader in a historic, nonviolent 28-day occupation of a federal building in San Francisco in 1977, which paved the way for the passage of the Americans With Disabilities Act, which went into effect in 1990. The protest is considered the longest nonviolent occupation of a federal building in U.S. history.
Town, who has cerebral palsy, said Heumann was the one who suggested using 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 to appear less handicapped. Finally, she decided to try anyway.
“And it literally changed my life,” said Town. “And that was part of what Judy did. She really helped people accept who they were as people with disabilities and take pride in that identity. And she has helped so many people understand their own strength as a disabled person.
A Times staff writer contributed to this story.