Remembering Judy Heumann, leading voice for disability rights

Judith “Judy” Heumann — widely regarded as “the mother” of the disability rights movement — passed away in Washington, D.C., on the afternoon of March 4, 2023, at age 75.

Judy was at the forefront of major disability rights demonstrations, helped spearhead the passage of federal disability rights legislation, helped found local, national and international disability advocacy organizations — including Berkley’s Center for Independent Living — held senior federal government positions, co-authored her memoir, Being Heumann, and its Young Adult version, Rolling Warrior, and was featured in the Oscar-nominated documentary film, Crip Camp: A Disability Revolution.

Born in 1947 in Philadelphia and raised in Brooklyn, New York, to parents Ilse and Werner Heumann, Judy contracted polio at age 2. Her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk. “Institutionalization was the status quo in 1949,” she wrote. “Kids with disabilities were considered a hardship, economically and socially.” When Judy attempted to enter kindergarten, the principal blocked her family from entering the school, labeling her a “fire hazard.” However, her parents, particularly her mother, fought back and demanded that Judy have access to a classroom. Judy eventually was able to attend a special high school, Long Island University (from which she earned a bachelor’s degree in 1969) and the UC Berkeley, where she earned a master’s degree in Public Health six years later.

In the 1960s, Heumann attended Camp Jened, a summer camp for people with disabilities in the Catskills, and she later returned there as a counselor in the 1970s. Several of the leaders of the disability rights movement also were at Camp Jened, which was the focus of the documentary Crip Camp.

During the same decade, the New York Board of Education refused to give Judy a teaching license because they feared she could not help evacuate students or herself in case of fire. She sued and went on to become the first teacher in the state to use a wheelchair. Continuing her fight for civil rights, Judy helped lead a protest that shut down traffic in Manhattan against Richard Nixon’s veto of the 1972 Rehabilitation Act, and she launched a 26-day sit-in at a federal building in San Francisco to get Section 504 of the revived Rehabilitation Act enforced.

Related stories

Berkeley’s Center for Independent Living, which launched the disability rights movement, turns 50

‘Never in our wildest dreams’: The documentary ‘Crip Camp’ nominated for an Oscar

Remembering Hale Zukas, daring visionary of the disability rights movement

Judy was instrumental in developing and implementing national disability rights legislation, including Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities.

In addition, Judy helped found the Independent Living Movement and the World Institute on Disability, and she served on the board of Berkeley’s Disability Rights Education & Defense Fund.

She also served on the boards of the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, Human Rights Watch, the United States International Council on Disability, Save the Children, and several others.

In 1993, Judy moved to Washington, D.C. to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration, a role she filled until 2001. From 2002-06, she served as the first Advisor on Disability and Development at the World Bank. From 2010-2017, during the Obama Administration, she worked as the first Special Advisor for International Disability Rights at the U.S. State Department. She also was appointed as Washington, D.C.’s first Director for the Department on Disability Services. President Joe Biden said in a statement that she was “a trailblazer – a rolling warrior – for disability rights in America.”

“Some people say that what I did changed the world,” she wrote, “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 addition to her advocacy work and busy professional life, Judy loved to attend musicals and movies, travel the world, make new friends, and hang out with old ones, many of whom were introduced to each other at dinners that she convened. Judy learned Hebrew as a child, became Bat Mitzvahed as an adult, and was a long-time member of the Adas Israel congregation.

Judy is survived by her loving husband, Jorge Pineda, her brother, Ricky, wife Julie and her brother Joseph and wife Mary, her niece Kristin, grand nephew Orion and many other members of both the Heumann and Pineda families. She had many close friends that will miss her dearly.

A memorial service will be held on Wednesday, March 8, in Washington, DC, and be live-streamed on the website of Adas Israel Congregation. See more details on Heumann’s website.