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Remembering Judy Heumann, disability rights leader (1947-2023)

2023 03 WHM Judy Heumann

The Golden West Chapter joins the world in mourning and celebrating the life and legacy of disability rights activist Judith “Judy” Heumann, who died March 4, 2023. Known as the “mother of the disability rights movement,” Heumann became an internationally recognized leader for her instrumental work pushing for historic legislation, including the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA) and the Rehabilitation Act.

Born in Philadelphia, Pennsylvania, and raised in Brooklyn, New York, Judy developed polio at the age of two. Her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk. At age of five, she was denied the right to attend school because she was considered a “fire hazard.” However, her parents fought for her right to an education, and she eventually attended a special school and high school. Judy attended Long Island University, where she organized protests and rallies advocating for students with disabilities to have better access to campus buildings and facilities. She later received a master’s degree from the University of California, Berkeley.

In 1970, Judy was denied her New York teaching license by the Board of Education despite passing the oral and written exams. She sued the board for discrimination and settled without a trial. As a result, she became the first wheelchair user to teach in New York City.

Judy was a founding member of the Berkeley Center for Independent Living — the first grassroots center — in 1975, where she served on the board for five years. Along with another well-known disability rights advocate, Ed Roberts, she helped launch the Independent Living Movement to raise awareness and support for the rights of disabled people to have access to resources and services to allow them to live in their communities. 

Judy was featured as TIME’s Woman of the Year in 1977. She fought for meaningful regulations to the Rehabilitation Act of 1978. Finally, after a 28-day sit-in at the U.S. Health, Education, and Welfare federal building, Section 504 of the Rehabilitation Act was signed, marking the first U.S. federal legislation granting civil rights protection for people with disabilities.

In 1983, Judy, along with Ed Roberts and Joan Leon, co-founded the World Disability Institute, which was one of the first global disability rights organizations founded and led by disabled people to fully integrate people with disabilities into the communities around them. She also served as a board member for disability organizations, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund and more.

Judy moved to Washington, D.C in 1993, to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration, a role she served in until 2001. From 2002-2006, she served as the first Advisor on Disability and Development at the World Bank. During the Obama Administration, she worked as the first Special Advisor for International Disability Rights at the U.S. State Department from 2010-2017. She also was appointed as Washington, D.C.’s first Director for the Department on Disability Services.

In 2016, Judy delivered a TedTalk focused on disability rights, which to date has more than 1.3 million views.

Our fight for disability rights — and why we’re not done yet

Her story was featured in the 2020 award-winning and Oscar-nominated documentary “Crip Camp: A Disability Revolution,” which captured the groundbreaking start of the disability rights movement and its early leaders. She continued to raise awareness when she was featured on “The Daily Show with Trevor Noah” in 2020. 

That same year, Judy released a memoir titled “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist”, followed by a young adult version titled “Rolling Warrior” in 2021.

“Some people say that what I did changed the world,” she wrote in her memoir. 

“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.”

In 2021 the Heumann-Armstrong Award was launched to honor disabled students who have fought against ableism in schools and higher education. She received several awards in her lifetime, including seven honorary doctorates. She gave a commencement speech at New York University in May 2022, where she received her most recent honorary doctorate.

Judy uplifted voices within the disability community through her podcast, “The Heumann Perspective.” In December 2022, Judy interviewed activist and person living with ALS, Ady Barkan, about his documentary, Not Going Quietly, which follows his journey into progressive politics after being diagnosed with ALS and stepping into the spotlight to ignite a movement for universal healthcare.

Recently, Ady shared his feelings about Judy’s impact on the world, based on his family’s recent attendance at a sporting event.

The Golden West Chapter and the ALS community are forever grateful to Judy for her lifetime of service. Her dedicated efforts to ensure that the rights of those who are disabled have equal opportunity to be who they want to be as individuals – through equal access to employment, places of business, education, and more – have had an immeasurable impact.

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