by Nils Skudra, Communications Specialist, DI-NC
As the 33rd anniversary of the Americans with Disabilities Act approaches, we must pay recognition to the numerous disability rights advocates who lobbied for the bill and the Congressional leaders who supported it. One of the most influential figures in the campaign for the ADA was Judy Heumann, who was widely considered the “mother of the disability rights movement.” Internationally renowned for her disability rights activism, she played an instrumental role in the development and implementation of numerous pieces of disability rights legislation, including the ADA. This is especially relevant in the aftermath of Ms. Heumann’s recent passing in March of this year, and therefore it is essential that we preserve and honor her legacy by continuing her life’s work.
Judy Heumann was born in 1947 to German Jewish immigrants in Philadelphia, PA, and was raised in Brooklyn, New York. At the age of eighteen months, she contracted polio, which led to her use of a wheelchair at age five. During her formative years, Judy faced significant discrimination, as she was denied the right to attend school because she was considered a “fire hazard,” and as an adult she was denied her teaching license by the same school district. After passing her oral and written examinations, Judy received a failing grade on her medical exam, which led her to sue the New York Board of Education for discrimination based on her disability. This case resulted in Judy becoming the first wheelchair user to teach in the state of New York.
Judy graduated from Long Island University in Brooklyn in 1969 and received her master’s in public health from the University of California, Berkeley in 1975. Her disability rights activism began during the 1970s when she helped lead the Section 504 Sit-in of 1977, a 26-day protest – the longest sit-in at a federal building to date – which resulted in the signing of new regulations for Section 504 of the Rehabilitation Act into law. Although Section 504 had been passed in 1973, the enforcement of its existing regulations was lax, and changes were made which weakened the regulations’ protections for people with disabilities. This led to the Sit-in at the San Francisco federal building in April 1977, drawing people from across the disability community with a wide variety of disabilities, from different racial, social, and economic backgrounds, and diverse age ranges. The Emergency 504 Coalition, a broad cross-disability coalition which garnered support from a wide variety of political, religious and civic organizations, established committees for outreach, fundraising, media, monitors, and publicity. Judy was among the protest leaders who testified at a congressional hearing held in the building, and her testimony contributed to the Coalition’s decision to send a delegation of leaders to Washington, where they held meetings with influential senators, including Alan Cranston and Harrison Williams.
The Sit-in and the Washington delegation’s testimony were pivotal in securing the passage of strong 504 regulations which embodied concepts of equality and integration, “and the affirmative steps that must be taken to achieve that for people with disabilities.” Although the enforcement of these regulations has continued to be characterized by limitations, they were influential in establishing “the basic operational principles that became the basis for legal compliance with the ADA,” including nondiscrimination, affirmative conduct, and the three-pronged legal definition of disability as opposed to a medical one. Under this legal definition, people with disabilities included “people with physical or mental impairments that substantially limit one or more major life activity, those who have a record of such impairment, and those who are regarded as having such an impairment.” Furthermore, the 504 Sit-instilled members of the disability community with “a new sense of pride, strength, community and confidence” and sparked a new understanding that the isolation of people with disabilities “stemmed from societal policy, not from some personal defects on our part and our experiences with segregation and discrimination were not just our personal problems.”
Following the Section 504 Sit-in, Judy played an important role in a variety of disability advocacy initiatives, including the founding of the Berkeley Center for Independent Living, the first grassroots disability center in the United States, and helped to launch the Independent Living Movement both nationally and globally. In 1983, she co-founded the World Institute on Disability (WID), together with Ed Roberts and Joan Leon, as “one of the first disability rights organizations founded and continually led by people with disabilities that works to fully integrate people with disabilities into the communities around them via research, policy, and consulting efforts.” In addition, Judy continued her political lobbying efforts, which were instrumental in the development and implementation of various pieces of disability legislation, including the Individuals with Disabilities Education Act, the Americans with Disabilities Act, and the UN Convention on the Rights of Persons with Disabilities.
During the debate over the Americans with Disabilities Act in 1990, Judy was a prominent advocate lobbying for the bill’s passage. On May 21, 1990, she was featured in a C-SPAN viewer call-in, together with Mary Reed of the National Federation of Independent Business, to discuss the ADA and its ramifications. Judy maintained that the bill’s passage was important because there were 43 million Americans with disabilities “who have experienced discrimination throughout their lifetimes, and many of these individuals have been forced to go on welfare because of discrimination. Many of them have been denied public transportation, because it hasn’t been accessible, have been denied the opportunity to go to movie theaters and restaurants and other places that people take for granted… We hope that we will see an end to much of this discrimination in a relatively short period of time.” During the call-in, Judy addressed Ms. Reed’s concerns about the ADA’s financial impact on small businesses, pointing to state laws in California and New York that were stronger than the ADA and that there were no cases of small businesses having to comply with inappropriate legislation or accruing undue costs. Furthermore, she called for working together in order to ensure that small businesses would not be adversely affected by the ADA’s implementation while complying with its regulations, and she maintained that the majority of discrimination cases that she had experience in her lifetime had nothing to do with cost, arguing that if people looked at the experiences of disabled individuals from a discrimination point of view, “we’re going to do everything in our power to make sure that that ends.”
Following the passage of the ADA, Judy continued her disability rights work in an official capacity in both the political and business spheres. From 1993-2001, she served as Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education under the Clinton administration, and from 2002-2006 she served as the World Bank’s first Adviser on Disability and Development. In this role, she led the World Bank’s disability work “to expand its knowledge and capability to work with governments and civil society on including disability in the global conversation.” In 2010, President Barack Obama appointed Judy as the first Special Advisor for International Disability Rights at the U.S. Department of State, where she served until 2017. Mayor Fenty of Washington D.C. nominated her as the first Director for the Department of Disability Services, in which she was responsibility for the Developmental Disability Administration and the Rehabilitation Services Administration. As a Senior Fellow at the Ford Foundation, she produced the white paper “Road Map for Inclusion.”
Throughout her life, Judy served on a variety of non-profit boards, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, Human Rights Watch, United States International Council on Disability, and Save the Children. In addition, she was awarded several honorary degrees from universities across the United States, including New York University, the University of Pittsburgh, Middlebury College, and Smith College. She also received numerous awards including “being the first recipient of the Henry B. Betts Award in recognition of efforts to significantly improve the quality of life for people with disabilities and the Max Starkloff Lifetime Achievement Award from the National Council on Independent Living.” Furthermore, Judy has been featured in a variety of documentaries, including the Oscar-nominated film Crip Camp: A Disability Revolution, Lives Worth Living, and The Power of 504, and in 2016 she delivered a TED talk, entitled “Our Fight for Disability Rights – and Why We’re Not Done Yet,” and hosted an award-winning podcast called the Heumann Perspective, featuring various members of the disability community.
Judy Heumann passed away on March 4, 2023, at the age of 75. Throughout the disability community, she has left an enduring legacy as a passionate advocate of disability rights who played an influential role in the development and passage of critical pieces of disability legislation. Among these bills, the ADA has had the most far-reaching and transformative impact on disability rights, paving the way for 43 million Americans with disabilities to have accommodations for access to public facilities and transportation and protection from discrimination in employment. While the disability community continues to grapple with significant issues that affect individuals with disabilities today, the strides that Judy Heumann and her colleagues made in securing passage of the ADA helped to lay the foundations for the rights that members of the disability community now possess, and their legacy can provide an inspirational model for contemporary advocates as they address current and future challenges in the field of disability rights.
 Kitty Cone, “Short History of the 504 Sit-in.” https://dredf.org/. Disability Rights Education & Defense Fund. Accessed May 2, 2023. https://dredf.org/504-sit-in-20th-anniversary/short-history-of-the-504-sit-in/.
 Cone, “Short History of the 504 Sit-in.”
 “Judy Heumann | Advocate for Rights.”
 Judy Heumann, in “Moments in Disability History 29 | The Final Push | The ADA Legacy Project.” https://mn.gov/portal/. Minnesota.gov Portal. Published May 1, 2015. Accessed May 6, 2023. https://mn.gov/mnddc/ada-legacy/ada-legacy-moment29.html.
 Judy Heumann, in “Moments in Disability History 29.”
 “Judy Heumann | Advocate for Rights.”