The Legacy of Judy Heumann and the Disability Rights Movement

Judy Heumann was often referred to as the "mother" of the disability rights movement. An activist and leader in the disability community, Heumann played a vital role in ensuring basic rights and access for disabled people across the U.S. and beyond, leaving a legacy of progress and advocacy. Her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, provides a personal account of her journey and advocacy.

How Old Was Judy Heumann When She Was Diagnosed with Polio?

Heumann's journey with disability began in 1949 when she started using a wheelchair at 18 months of age due to a diagnosis of polio. At the time, a polio vaccine had not been developed, causing widespread concern. The disease primarily affected the spinal cord and was commonly diagnosed in children under the age of five. While modern medicine has largely eliminated polio, Heumann's life, and her diagnosis, were widely misunderstood by those around her, causing her to face struggles with disability from a young age. When Heumann attempted to attend kindergarten, the principal at her local school refused, referring to Heumann as a "fire hazard" due to her wheelchair and her inability to walk. Luckily, Heumann's parents were great advocates, and after years of demanding Heumann be allowed to attend public school, she was permitted to learn in the basement of a New York school, separate from her peers without disabilities. She recalled her experience in the movie Crip Camp saying, "In some way, even when we were that young, we all knew that we were being sidelined."

Heumann's Life with Polio

In her childhood and teen years, Heumann attended Camp Jened, a camp for people with disabilities located in her home state of New York. The Oscar-nominated documentary Crip Camp, directed by Nicole Newnham and James LeBrecht, traces the origins of the disability rights movement back to Camp Jened, highlighting Heumann and fellow camp attendees who went on to advocate for the rights disabled people know today. Together, the group mobilized, organizing protests across the U.S. like the 504 sit-ins and Capitol Crawl, which led to the passage of laws to ensure equity and inclusion for disabled people.

Barriers to Education

Heumann's past experiences with disability discrimination furthered her advocacy. After applying to be a teacher at the same school that once denied her admittance to kindergarten, she was denied a teaching license. She passed all her oral and written exams, but because she couldn't walk, her medical exam was considered failed. Heumann filed a federal lawsuit against the New York Board of Education. The suit was heard by a judge, who suggested the Board of Education reconsider their decision to allow Heumann her teaching license. When they did, Heumann became the first wheelchair user to teach in the state of New York.

What Did Disabled in Action Do?

Heumann founded Disabled in Action after her lawsuit against the New York Board of Education. The group, which consisted of multiple former Jened campers, formed multiple committees, with their first focus being on the deinstitutionalization of disabled people. During the 1970s, many people with disabilities were kept away from society in institutions. News broke of a hospital in New York that housed disabled individuals with one care attendant for roughly 50 disabled people, causing basic needs of hygiene and food to go unmet. Seeing the poor treatment of disabled people in these institutions, Disabled in Action worked to implement anti-discrimination laws, so people with disabilities could enjoy the same rights as those without disabilities.

Disabled in Action's Beginnings

In 1972, the Rehabilitation Act was written. Within the law was Section 504, which would prohibit disability discrimination in any federally funded organizations. This meant hospitals, schools, transportation, and other government-funded operations would be required to be accessible to people with disabilities.

Which Protests Did Judy Heumann Organize?

When President Nixon vetoed the Rehabilitation Act, Disabled in Action held a demonstration outside of Nixon's headquarters in New York City where they blocked off multiple streets in protest, emphasizing the need for the passage of Section 504. In 1973, Nixon signed the Rehabilitation Act, but Section 504 was not enforced, leaving disabled people without basic access to federally funded, public spaces.

Section 504 Protests

With little enforcement and resistance from organizations that did not want to make spaces accessible to disabled people, Disabled in Action mobilized again in 1977, protesting at federal offices across the U.S. The group reached the office of the Regional Director of Health, Education and Welfare, but after his refusal to speak with other lawmakers, the protesters stayed outside his office until he listened to their testimonies.

The 26-Day Section 504 Sit-in

Led by Kitty Cone and Heumann, the protestors took a vote to see who wanted to stay overnight, which eventually turned into a 26-day long protest in San Francisco. To get rights activists to leave, access to phones and hot water were cut off, but the group adapted, just as they had to an inaccessible society. They communicated with people outside the building through sign language and contacted members of the Black Panthers to provide food. Other civil rights groups provided mattresses and medical care, so people could continue to protest until Section 504 was signed.

Her Influence on the Americans with Disabilities Act (ADA)

There was very little media coverage of the disability rights movement at the time. In fact, Evan White, a news reporter, was one of the only people covering the disability rights protests. A strike among news organizations caused channels to get very little news, and White's coverage of the disability rights protests soon appeared on TV stations across the country. With national news coverage, the U.S. Secretary of Health, Education and Welfare signed Section 504. Access to public schools and healthcare facilities, as well as building modifications like ramps and elevators, were required by law in federally funded places, creating a barrier-free environment for disabled people. Still, the fight for disability rights was not over. Discrimination in employment and in private, non-federally funded businesses was still widespread. On March 12, 1990, a group of disabled activists held a Capitol Crawl, where they crawled up the steps of the U.S. Capitol Building, advocating for the passage of the Americans with Disabilities Act (ADA), and in July of that same year, the ADA was passed. The law would ensure access and inclusion of disabled people in any space open to the public.

The World Bank and Beyond: Judy's Global Influence

Heumann dedicated her career to advancing the rights of disabled people through various roles. In 1972, she co-founded the Berkeley Center for Independent Living. The center continues to provide a wide range of services, including assistive technology, independent living and peer support, housing assistance, benefits counseling, and emergency preparedness to allow people with disabilities to live independently.

In 1983, she co-founded the World Institute on Disability (WID) with Ed Roberts and Joan Leon, one of the first global disability rights organizations led by people with disabilities. WID works to fully integrate people with disabilities into their communities through research, policy, and consulting efforts.

From 1993 to 2001, Heumann served as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education. She then became the first Adviser on Disability and Development for the World Bank from 2002 to 2006, where she led inclusion efforts for people with disabilities on a global scale. In 2010, Judy was appointed as the first Special Advisor for International Disability Rights at the U.S. Department of State, serving until 2017. Additionally, she was the first Director for the Department on Disability Services in Washington, D.C.

Throughout her life, Heumann served on numerous non-profit boards, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund (DREDF), and the United States International Council on Disability.

What Was Judy Heumann Known For?

Heumann not only left a lasting impact on the world, but she advocated for greater inclusion and access for disabled people. Her work emphasized the importance of self-advocacy in achieving equality. She once said, "I wanna see a feisty group of disabled people around the world…if you don't demand what you believe in for yourself, you're not gonna get it." Her sentiment remains true today, as many disabled people continue to advocate for changes in laws and among society to create a fully inclusive and accessible world.

Want to learn more about the ADA and disability rights? Check out the disability rights section of our article library and the related articles below.