Philly-born Judy Heumann, disability rights activist, dies at age 75

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 her youngest brother, Rick Heumann.

He said she had been in the hospital a week and had heart issues that may have been the result of something known as post-polio syndrome, related to a childhood infection that was so severe that she spent several months in an iron lung and lost her ability to walk at age 2.

She spent the rest of her life fighting, first to get access 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 could she make things better for other people,” he said, adding that the family drew solace from the tributes that poured 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 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 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 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, German-Jewish immigrants who got out before the Holocaust, experienced while trying to secure a place for their daughter in school. “Kids 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 is wrong in any way, shape or form.”

Judy Heumann 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, said Maria Town, the president and CEO of the American Association of People with Disabilities.

“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 also 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.

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.”