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Honoring Judith "Judy" Heumann

Close-up photo of Judy Heumann giving a speech at CIL's 50th anniversary gala. She is wearing a blue jacket, blue pants, and red-framed glasses. She is in a powered wheelchair and holding note cards.
Black and white photo of Judy Heumann and other protestors demonstrating as part of the 1993 disability rights parade and rally near Madison Square, NY, in celebration of the ADA (in white T-shirt and cap).
Photo of Judy Heumann giving a speech at CIL's Berkeley Street Festival. She is holding a microphone and is on a small stage in front of Ed Roberts Campus.

Judy Heumann giving a speech at CIL's 50th anniversary gala.

Judy Heumann demonstrating as part of the 1993 disability rights parade and rally near Madison Square, NY, in celebration of the Americans with Disabilities Act (in white T-shirt and cap)

Judy Heumann giving a speech at CIL's Berkeley Street Festival.

Judith Heumann Presente! 
Your fierce determination will be missed.

“Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.” ~ Judith Heumann, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

On Saturday, March 4, 2023, we lost a champion in the ongoing fight for civil and human rights. Judith (Judy) Heumann passed away at age 75 in Washington, D.C., after a lifetime of advocacy and effective organizing of people with disabilities.

 

With the loss of Judy, the Berkeley Center for Independent Living (CIL) lost a beloved founding and early staff member. Judy’s advocacy was central to a vibrant disability rights movement that won legislation to secure federal funding streams in order to establish independent living centers across the U.S. As the first center in the United States, the CIL became the model for what are now 400 centers nationally and internationally and helped to launch the Independent Living Movement. We had the honor of hosting Judy for our 50th anniversary events this past October.

Judy was an internationally recognized disability rights activist at the forefront of disability rights demonstrations, and on behalf of CIL, was a primary organizer and spokesman in the prolonged campaign for national disability rights legislation that culminated with passage of the Americans with Disabilities Act in 1990. She founded several local, national, and international disability advocacy organizations that remain today. As a young adult, Judy authored Rolling Warriors and co-authored her more recent memoir, Being Heumann. Her legacy of youth leadership and advocacy was featured in the Oscar-nominated documentary film, Crip Camp: A Disability Revolution. She advised the Clinton and Obama administrations in several senior federal government positions.

 

Born in 1947 in Philadelphia and raised in Brooklyn, New York, Judy contracted polio at age two. Her mother and father, Ilse and Werner Heumann, had been among 1,400 Jewish children and teenagers sent by their parents from Germany to the US to escape the horrors of the Holocaust. Neither of them ever saw their parents again. Judy’s parents raised her with the belief that you should always speak up if you see any wrongdoing and treat everyone in the world equally.

 

When her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk, they refused. Throughout childhood, her mother advocated for her. When Judy attempted to enter kindergarten, the principal blocked her family from entering the school, labeling her a “fire hazard.” Her mother fought back and demanded that Judy have access to a classroom. This experience helped Judy understand not to accept the limitations that others and institutions place on you based on their prejudice and discrimination. Judy eventually was able to attend a special school, high school, Long Island University (from which she earned a B.A. in 1969), and earned a Masters in Public Health from UC Berkeley. 

 

In the 1960s, Heumann attended Camp Jened, a summer camp for people with disabilities in the NY Catskills, and she later returned there as a counselor in the 1970s. A focus of Crip Camp, several of the leaders of the disability rights movement attended the camp where the seeds of their activism were planted and grew.

 

During that time, the New York Board of Education refused to give Judy a teaching license fearing 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. With a group of activists with a diversity of disabilities, races, genders, and sexual orientations, Judy co-founded Disabled in Action and continued her fight for civil rights. The group led a protest that shut down traffic in Manhattan against Richard Nixon’s veto of the 1972 Rehabilitation Act. 

 

In 1977, she co-launched a sit in that took place at the San Francisco headquarters of the federal Health, Education, and Welfare administration to protest its delayed adoption of Section 504 regulations implementing the Rehabilitation Act’s mandate to guarantee nondiscrimination and equal access for individuals with disabilities in federally-funded programs, activities, and services. Section 504 says that “no otherwise qualified handicapped individual in the United States shall solely on the basis of his handicap, be excluded from the participation, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

Ed Roberts (left), Judy Heumann (center), and Joan Leon (right)

Ed Roberts (left), Judy Heumann (center), and Joan Leon (right)

In addition, Judy was instrumental in developing and implementing other national disability rights legislation, including the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities. In addition to the Berkeley Center for Independent Living (CIL), Judy also helped found the World Institute on Disability with Ed Roberts and CIL Board member Joan Leon. She also served on the boards of the American Association of People with Disabilities, 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.

 

The Center for Independent Living and its community will be forever grateful for Judy Heumann's courage, commitment, and activism. May her fierce spirit, determination, and the clarity of her vision on behalf of people with disabilities continue to motivate meaningful change around the world.

 

Judy is survived by her husband, Jorge Pineda, and her brothers Ricky and Joseph. She will be deeply missed by her many close friends, fellow activists, and the many movements she inspired and advanced.

Photo of Judy Heumann and Jorge Pineda

Judy Heumann (left) and Jorge Pineda (right)

The Board of the Center for Independent Living in Berkeley announces the establishment of the Judy Heumann Memorial Fund to perpetuate and expand the services and advocacy that Judy initiated during her invigorating leadership of CIL in its early years, in the 1970s and '80s. Judy created at CIL a model of service and activism—by and for people with disabilities—that she was instrumental in replicating throughout the world, as an individual and as a nonprofit and government official.

We add our voices to those of President Biden and others who have hailed her lifetime of activism. There is not a person with disabilities anywhere whose life has not been fundamentally improved by the sturdy foundation that Judy crafted at CIL and at the other pioneering organizations she founded.

 

We mourn Judy's loss and rededicate ourselves to empowering other people with disabilities using the tools she taught us to wield so skillfully and fearlessly.

Remembering Judith "Judy" Heumann

We encourage you to use this as a space to share your favorite memories of Judy Heumann. You can upload your thoughts, a reason she inspired you, an anecdote or memory you may have of Judy, photos you took with her, links to other articles or media coverage you’ve seen, etc.