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Judy Heumann: the Mother of the Americans with Disabilities Act

  • 21 hours ago
  • 7 min read

By Meriç Özler



Judy Heumann was born on December 18th, 1947, in Philadelphia, Pennsylvania as an eldest daughter of three children of two Jewish immigrants who are Werner and Ilse Heumann [1]. She grew up in Brooklyn, New York City. Judy Heumann's disability rights activism began when she contracted polio at the age of eighteen months, which resulted in the loss of her ability to walk. Activism of Judy was rooted as a collective act from the beginning, and she learned collective activism through her life therefore saying ‘no’ to institutionalizing. The first struggle for her family was for them to decide not to place Judy to an institution which was a common practice for disabled people in those days. When she was 5 years-old, her parents wanted to enroll her to a kindergarten, but they couldn’t because the school considered her as a fire hazard. The school's principal said that ‘Judy is a fire hazard’ [2] because they thought that wheelchairs can cause fire for the school. After being rejected by the public school system, Judy and her mother attempted to enroll her in a Yeshiva which is a Jewish day school. At first, the school refused her because she could not speak Hebrew. However, even after Judy learned Hebrew, they rejected her again, simply stating, "Well, it's just not going to work." [2] Although her mother persistently tried to provide her with the same educational opportunities as other children, the only education offered by the New York City Board of Education at the time was home instruction by a teacher for just two and a half hours per week [1]. Even after Judy eventually gained access to education, she was repeatedly met with institutional "no"s [3].  These repeated institutional rejections motivated Judy Heumann and others with disabilities to challenge those "no" answers, transform public attitudes and institutional mindsets, and advocate for structural solutions rather than individual exceptions.


Furthermore, Judy's legal and political struggle gradually evolved beyond simply asking for permission or requesting access to schools. Instead, it focused on ensuring that disabled people could exercise their fundamental rights without having to ask for accommodations or permission in the first place. Her fight was never only about her own ability to attend school or enter a particular building. It was about guaranteeing that everyone with disabilities could enjoy these rights and access them on an equal basis with others. Rather than advocating for separate schools specifically designed for disabled students, Judy argued that all schools should be accessible and inclusive. Likewise, she believed that the broader Civil Rights Movement should include disabled people rather than treating disability rights as a separate issue. In this sense, Judy Heumann and her fellow activists developed and led what became the Disability Rights Movement as a civil rights movement demanding equality, inclusion, and systemic change.


One of the most significant turning points in Judy Heumann's life, as well as in the lives of many other disabled children, was Camp Jened. Judy attended the camp every summer from the age of nine until she was eighteen [1]. Camp Jened was established as a summer camp for disabled children so that they could enjoy the same summer camp experiences as their non-disabled peers. Although it was founded in the 1950s, the camp underwent a significant transformation that reflected the era's broader culture of freedom and social change during the 1970s. Like many similar initiatives, however, it later faced financial difficulties during the 1980s and eventually closed [4].  At Camp Jened, the campers experienced what it meant to build a community, work together, and imagine the possibility of living in a world without barriers. As Judy later recalled, the camp was a playground where they discovered themselves, participated in activities together, and found the confidence to make their voices heard [5].  One of the camp's most important lessons which Judy and many others later sought to recreate in everyday life in Berkeley, was that disability itself was not the obstacle when environments were accessible and people were willing to provide support. This realization became a transformative experience that profoundly shaped their lives [4]. Camp Jened had a profound influence on Judy Heumann's activism, shaping both her political consciousness and the practical strategies in the disability rights movement.


Heumann earned a bachelor’s degree from Long Island University in 1969. Another struggle began after graduation. The New York Board of Education denied her request for a teaching license since a wheelchair can be an obstacle for evacuation of students and herself rapidly in case of a fire [1]. After being denied, she did not give up. Judy sued the board, after which, she was granted her license and started to work as an elementary teacher with a wheelchair in New York City. She worked for 3 years as a teacher [1]. Judy’s advocacy for her education rights impacted parents of children with intellectual disabilities from Pennsylvania. They sued for rights of enrollment of their children in public schools. The case known as PARC v. Pennsylvania, became successful and led to the foundation for the 1975 Education of All Handicapped Children Act, later known as the Individuals with Disabilities Education Act (IDEA) [6].


Heumann and her friends founded Handicapped in Action organization which was later renamed Disabled in Action. This organization supported the rights of people with disabilities in terms of legislation and political protest. After President Richard Nixon vetoed the early attempt of the 1973 Rehabilitation Act which included section 504 that contained important sanctions for all government and public entities, approximately 80 activists of Disabled in Action organized a sit-in and blocked the traffic of Madison Avenue in New York [1]. In 1974, a development took place that would later contribute to Heumann being recognized as the "Mother of the ADA" [6].  Heumann was appointed the legislative assistant to the chair of the US senate committee on Labor and Public Welfare. She worked in developing the Individuals with Disabilities Act which paved the way for the Americans with Disabilities Act (ADA). Heumann later moved to California from New York. She earned a Master of Science degree in public health in 1975 from the University of California, Berkeley [1].


Besides that, she served as a deputy director of the Center for Independent Living which is a community space where disabled people could come together to address shared challenges while receiving the equipment, services, and physical support necessary to live independently. More importantly, the Center created an environment in which disabled people could become visible, participate fully in society, and exercise their independence. By working there, she assisted in implementing national legislation for special education, disability research, independent living programs, and vocational rehabilitation. 


Heumann played a major role in the 1977 Section 504 sit-in and protests after Joseph A. Califano Jr. refused to sign the regulations necessary to implement Section 504 of the Rehabilitation Act of 1973 [1]. The occupation lasted for twenty-eight days under difficult conditions. During the protest, Califano prevented food and medication from entering the HEW building, forcing the demonstrators to rely on support from other activist communities. In particular, the Black Panthers, along with a church group, people from a lesbian bar, local community organizations, the Delancey Street Foundation, and The Salvation Army, provided meals and delivered essential medications to the protesters [1][2].  According to the testimonies of participants featured in the documentary ‘Crip Camp’ who occupied the building, Judy Heumann's determination, persistence, and courage were crucial to sustaining the protest as pressure on the demonstrators continued to intensify [4]. The protest also attracted significant media attention. One newspaper headline declared, "An Occupation Army of Cripples Has Taken Over the San Francisco Federal Building." [2]


Although officials from the Department of Health, Education, and Welfare proposed solutions resembling the doctrine of "separate but equal" during negotiations with the protesters, the demonstrators ultimately achieved their goal. Califano signed the Section 504 regulations, bringing the long-delayed provisions into effect [2]. As a result, the federal government was required to enforce the protections established under Section 504, prohibiting discrimination against disabled people in federally funded programs and ensuring greater access to public institutions such as schools, hospitals, and government buildings.


Heumann expanded her advocacy to international level by engaging with global counterparts on disability rights. Therefore, Heumann and her colleague Ed Roberts established the World Institute on Disability. Then, Mayor Adrian Fenty appointed her as the first director of the department on disability services of Washington D.C. She had a major role for Democrats and Republicans in the preparation and implementation of the Americans with Disabilities Act (ADA) in 1990 and the Americans with Disabilities Act Amendments in 2008 [7].


She worked as the assistant secretary of the office of Special Education and Rehabilitation Services at the U.S. Department of Education from 1993 to 2001 [1]. Moreover, in 2002, she started her role in the World Bank Group as an advisor on disability and development for four years. Besides that, she became a lead consultant to the Global Partnership for Disability and Development. Later, during the Obama presidency, Heumann was appointed as the first special advisor on international disability rights of the U.S. State Department. She left the role in 2017 and became a senior fellow at the Ford Foundation [1]. 


Judy Heumann died on March 4, 2023, due to heart disease. She was 75 years old when she died [1].


Recommended further reading/viewing for a close up of Heumann’s life:


The camp that played a major role in both Judy and other disabled children’s life is the topic of Crip Camp, a documentary directed by Nicole Newnham and James LeBrecht. Judy and other campers who attended the camp gave some interviews for the documentary. Therefore, the movie is a valuable source for understanding the impact of the camp for these children. 


Being Heumann is the memoir of Judy Heumann which is written by Judy Heumann and K. Joiner. The book provides key insights and personal experiences of an influential disability activist. 

 


References


[2] J. E. Heumann and K. Joiner, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Boston, MA, USA: Beacon Press, 2020.

[3] J. J. Hunsaker, "Three Lessons from Judy Heumann’s Being Heumann: An Unrepentant Memoir of a Disability Rights Activist," Rehabilitation Research, Policy, and Education, vol. 37, no. 4, pp. 295–296, 2023, doi: 10.1891/RE-23-07.

[4] N. LeBrecht and J. LeBrecht, dirs., Crip Camp: A Disability Revolution. Higher Ground Productions and Netflix, 2020.

[5] D. Leiderman, "The Activist Star of 'Crip Camp' Looks Back at a Life on the Barricades," The New York Times, Mar. 25, 2020. [Online]. Available: https://www.nytimes.com/2020/03/25/movies/crip-camp-judy-heumann.html. [Accessed: Jul. 13, 2026].

[6] Makematic, Untold: Judy Heumann: The Mother of ADA. Makematic, 2022.

[7] P. Murray, "Remembering Judy Heumann," Congressional Record, vol. 169, no. 57, Mar. 29, 2023. [Online]. Available: https://www.congress.gov/118/crec/2023/03/29/169/57/CREC-2023-03-29-senate.pdf. [Accessed: Jul. 13, 2026].

 
 
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