Blog, United Spinal Updates

United Spinal Association Mourns the Death of Judy Heumann

United Spinal Association joins with the global disability community to mourn the loss of Judith “Judy” Heumann.

Judy Heumann, a White older woman with glasses, wears a bright blue shirt with purple flowers.Judy Heumann died on Saturday, March 4, at 75. Known as the “Mother of Disability Rights,” Judy was an untiring, internationally renowned advocate for all people with disabilities. She is survived by her husband, Jorge Pineda, who she lived with in Washington, D.C.

Judy may be best known as a primary organizer of the 1977 Section 504 sit-in, which lasted 28 days. That sit-in held the record for the longest federal building occupation for decades. “We demonstrated to the entire nation that disabled people could take control over our own lives and take leadership in the struggle for equality,” said Judy.

The demonstration ended with regulations prohibiting the federal government from discriminating against people with disabilities. The 2020 documentary, Crip Camp, nominated for an Academy Award, captures how Judy became one of the sit-in’s leaders.

“I am grateful for all she did for people with disabilities,” says United Spinal Association CEO Vincenzo Piscopo. “What a great gift to humanity she was. Judy, we will miss you and promise to continue the fight on your behalf and in your honor.” Enzo presented Judy with United Spinal’s Lifetime Impact Award at our 2022 #StrongWheeled Together gala.

Long and Storied Career

A young Judy Heumann speaks at a microphone. She is wearing a Sect. 504 button.If co-organizing the 504 sit-ins was all Judy had done, it would have been enough. But her history as an activist stretched both before and long, long after that sit-in.

Judy’s parents, Werner and Isle, were Jewish refugees from Germany, and her grandparents perished during the Holocaust. She contracted polio when she was 2, just a few years before the vaccine. Her mother successfully fought for her to attend her local school in Brooklyn. In 1969, she graduated college with an education degree. In 1970 she had to sue the New York City Board of Education to get her teaching license. The Board said her wheelchair made her a “fire hazard.” Her lawyers said this was the first disability civil rights case filed in federal court.

In addition to Sect. 504, Judy helped to develop and pass the Individuals with Disabilities Education Act, the Americans with Disabilities Act and the United Nations Convention on the Rights of People with Disabilities. She co-founded the first-ever Center for Independent Living in Berkley, California and the World Institute on Disability. She served in the Clinton and Obama administrations and was the World Bank’s first advisor on disability and development from 2002-2006. In 2010, as the first Special Advisor on Disability Rights for the U.S. State Department under Obama, Judy pushed for an international version of the Americans with Disabilities Act.

Judy 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 and Save the Children.

Judy Never Slowed down

Judy’s book, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” was published in 2020. She also co-wrote two companion books for young people . “Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels who Helped Spark a Revolution,” was published in 2021. And “Fighting for YES! The Story of Disability Rights Activist Judith Heumann” came out in 2022.

These books are companion pieces for the movie, Crip Camp. They celebrate disability history, and introduce countless of young people to our movement.

Judy enjoyed interviewing disabled changemakers in her podcast, The Heumann Perspective. She was a beloved mentor of too many younger people with all types of disabilities to count, including United Spinal’s own Director of Advocacy Stephen Lieberman.

Beloved Mentor

Steve credits Judy with helping him find his path to disability advocacy. “I just saw her in December. I could never get over the fact that she knew who I was,” he says. He first met her at a National Council on Independent Living conference in 2018.

“I had been working as one of the few openly disabled Congressional staffers since 2009, and I was trying to figure out what I wanted to do next in my career,” says Steve, who is autistic. “Talking to her helped me feel a greater sense of clarity that I needed to share my knowledge and expertise with the disability community and that I didn’t have to stay on Capitol Hill to do that. In fact, it made more sense for me to leave the Senate so that I could be more directly engaged with the community.”

That conversation led to Steve joining United Spinal in 2019. Today, he leads our Grassroots Advocacy Network’s fight for the rights of people with spinal cord injury and disorders and all wheelchair users.

Steve’s story is like so many others in our community whose lives were touched by Judy’s wisdom and support. That includes our own CEO, Vincenzo Piscopo.

“I owe her in great part for who I am today,” says Enzo, who became paralyzed in 2010 from a herniated disk. “I am thankful for the battles that she fought and won, and I treasure the little opportunities I had to speak with her. She made me a better person, and I will miss her.”