A Smithsonian magazine special report

The tireless activist, who died this weekend at 75, spent decades advocating for Americans with disabilities

Judy Heumann, who dedicated her life to changing the legal landscape for disabled Americans, died on Saturday at age 75.

Known as the “mother of the disability rights movement,” Heumann organized protests, advocated for new legislation and served in two presidential administrations. She recently appeared in the Oscar-nominated documentary Crip Camp: A Disability Revolution, which came out in 2020.

“Some people say that what I did changed the world,” she wrote in her 2020 memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. “But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”

Born in Philadelphia in 1947, Heumann was raised in Brooklyn. When she contracted polio in 1949, she spent three months in an iron lung and lost the ability to walk. Heumann’s mother tried to sign her up for kindergarten a few years later, but the school’s principal refused to admit her, describing her and her wheelchair as a “fire hazard,” per the New York Times’ Alex Traub. 

At age 9, she was finally permitted to enroll—though she was taught in the school’s basement alongside other students with disabilities. Heumann went on to earn a bachelor’s degree in speech and theater from Long Island University, followed by a master’s degree in public health from the University of California at Berkeley.

Heumann first entered the public eye in 1970. At age 22, she sued New York City for denying her a teaching position because of her disability. Several months later, the city reversed course and gave her a teaching license.

In 1977, Heumann helped organize protests that ultimately led to the implementation of Section 504 of the Rehabilitation Act, which outlawed discrimination against disabled Americans by any institutions receiving federal funding. That law laid the groundwork for the 1990 Americans with Disabilities Act (ADA), which expanded those protections to other parts of public life. 

As Nora McGreevy reported for Smithsonian magazine in 2020, the ADA remade “the physical environment of the country by mandating accessibility in public spaces—entry ramps, Braille on signs, automatic doors, curb cuts and lifts on city buses and other measures that make it easier for the more than 61 million Americans living with disabilities to participate fully in society.”

She continued her career in public service, working first for the Senate Committee on Labor and Public Welfare, then later as the assistant secretary for special education and rehabilitation services under President Bill Clinton. She also worked as a special adviser for international disability rights at the U.S. State Department during President Barack Obama’s administration and served as the first director of Washington, D.C.’s disability services department under Mayor Adrian Fenty.

Over the years, Heumann also founded and supported several advocacy organizations. One of those was the Center for Independent Living in Berkeley, an advocacy group that “provide[s] people with skills, knowledge and resources that empower them to eliminate damaging and stereotypical notions of disability so that they can strive toward realizing their full human potential,” per the organization’s website. 

Heumann also served as a board member, fellow and adviser to a number of other institutions, including Human Rights Watch, the Ford Foundation and the World Bank. She even helped curators at the Smithsonian’s National Museum of American History build out the museum’s materials on disability history.

“She became an activist because of the injustice and ignorance that surrounded disability in the 1950s and ’60s,” Katherine Ott, the museum’s curator in the division of medicine and science, tells Smithsonian magazine. “Her practicality, learned from the need to get into a school building, on a bus or often assist other kids, gave her a brilliant impatience and fearless honesty. Judy and a small number of other disability activists shaped the world we all now enjoy, with the Americans with Disabilities Act, legal protections for housing, education, jobs and disability pride.”

As news of Heumann’s death spread, tributes started pouring in from friends, loved ones, activists and political leaders. Even President Joe Biden issued a statement expressing condolences, describing Heumann as a “trailblazer” and “a rolling warrior” who dedicated her life to “fighting for the inherent dignity of people with disabilities.”

Heumann was also known as a mentor for younger disability activists, as the 19th’s Sara Luterman writes. One of those activists is Ari Ne’eman, 35, co-founder of the Autistic Self Advocacy Network. Shortly before Heumann’s death, Ne’eman conducted an interview with her, which he shared with the 19th.

“I believe more and more that our movement can’t be isolated,” she told him. “That we need to be part of a changing world. We have to look at issues like global warming and the environment. I think you have to be in a position where you’re ahead of the game and not trying to catch up to a game that keeps changing.”

Sarah Kuta is a writer and editor based in Longmont, Colorado. She covers history, science, travel, food and beverage, sustainability, economics and other topics.

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