Judy Heumann, a lifelong disability rights advocate, passed away on Saturday at 75 years old. She was one of the earliest advocates of the independent living movement. As a toddler, she contracted polio which left her unable to walk.
Poliomyelitis, commonly known as polio, is an infection caused by a virus (poliovirus). Polio is most common in children under the age of five. It can result in muscle weakness, permanent disability, and even death. Clinical symptoms range from minor respiratory sickness, gastroenteritis, and malaise to severe paralysis.
In her twenties, Heumann fought the New York City Board of Education to become a teacher. The board of education denied Heumann a teaching license. She then spearheaded a 25-day sit-in in San Francisco in 1977, demanding the adoption of federal legislation that preceded the Americans With Disabilities Act. Heumann published a memoir titled “Being Heumann” after serving in the Clinton and Obama administrations.
Heumann also worked with the late Ed Roberts. Ed got in touch with Judy. He urged her to relocate to California. Together with other activists, they opened the first Center For Independent Living in the U.S.
Centers for Independent Living are non-profit community-based organizations founded and operated by disabled people. They work to ensure that disabled people can live successfully in their community with the necessary services and assistance.
CILs are unique in that they operate under a strict consumer control basis, with disabled people directly managing and staffing the organization. Centers for Independent Living provide peer support, information and referral, advocacy, independent living skills training, and assistance during times of transition. Today, the United States has 403 Centers for Independent Living (CILs), 330 branch offices, and 56 Statewide Independent Living Councils.
She also was featured in films and television programs. She was one of the stars of the film Crip Camp. The film tells the story of a summer camp in New York for disabled teenagers in the 1970s. Other campers included future disability advocates Jim LeBrecht, Neil and Denise Jacobson, and Bobbi Linn. In the film My Disability Roadmap, she has a conversation with Samuel Habib, a man living with Cerebral Palsy navigating adulthood.
The lives of individuals like myself would be much different without people like Judy Heumann. Judy and other disabled people who fought for me, and others with disabilities have my eternal gratitude. Because of their work, accessibility is now a part of everyday life, inclusion is a priority, and disabled people’s voices are being heard.
“About Independent Living.” National Council on Independent Living, National Council on Independent Living, 30 May 2019, https://ncil.org/about/aboutil/.
“Centers for Independent Living.” Mass.gov, The Commonwealth of Massachusetts , https://www.mass.gov/info-details/centers-for-independent-living.
Leiderman, Deborah. “The Activist Star of ‘Crip Camp’ Looks Back at a Life on the Barricades.” The New York Times, The New York Times Company , 25 Mar. 2020, https://www.nytimes.com/2020/03/25/movies/crip-camp-judy-heumann.html.
McDonald, Gina, and Mike Oxford. “History of Independent Living: Statewide Independent Living Council of Georgia.” Statewide Independent Living Council of Georgia, Statewide Independent Living Council of Georgia, 27 Mar. 2018, https://www.silcga.org/about-independent-living/history-of-independent-living/.
“News Wrap: Biden Pushes for Voting Rights during Visit to Selma.” PBS, Public Broadcasting Service, 5 Mar. 2023, https://www.pbs.org/newshour/show/news-wrap-biden-pushes-for-voting-rights-during-visit-to-selma.
Walter, Kristin, and Preeti N. Malani. ‘What Is Polio?’ JAMA, vol. 328, no. 16, Oct. 2022, pp. 1652–1652, https://doi.org10.1001/jama.2022.17159.