Editor’s Note: Judy Heumann was one of the most influential disabled women of all time. AAPD’s Editorial Manager Naomi Hess wrote this profile of Judy for a journalism class in December 2021, prior to Judy’s untimely passing on March 4, 2023. Because this profile was written when Judy was alive (and very engaged in the disability community), we have chosen to keep it in the present tense.
We miss our friend and collaborator Judy Heumann very much. Just as she is alive in the present tense in this piece, her spirit and dedication are very much alive in our work, as AAPD and our community continue Judy’s mission.
Read this exclusive article published in honor of Women’s History Month to learn more about Judy’s lasting impact on the disability rights movement.
Judy Heumann wants to make it very clear that she is not retired.
Widely considered one of the most influential disability rights activists of all time, she shows no signs of slowing down.
After we discussed her years of disability advocacy inside and outside of the federal government, I was curious to hear how Heumann filled her time these days.
“What do you do now that you’re retired?” I asked.
“I don’t define myself as retired,” she said. “I retired from the federal government.”
“Yes, that’s what I meant,” I replied.
“Which means that I can get my health care,” she continued. “Because I’m 73, I get my Social Security and all these other things. But yeah, I would not describe myself as being retired.”
Heumann may no longer have a government job. However, her career as a leader of the fight for disability rights continues.
Heumann’s career ranges from leading disability rights protests that prompted legislative change to holding positions in the federal government, first as President Bill Clinton’s Assistant Secretary of the Office of Special Education and Rehabilitation and later as President Barack Obama’s Special Advisor on International Disability Rights for the State Department.
Now, among the many disability causes to which she lends her leadership, she advocates for better media representation of people with disabilities and mentors the next generation of disability activists.
“What excites me is the fact that more and more people are recognizing the importance of identifying as having a disability,” Heumann said about today’s advocates.
“As people become more engaged, a percentage of those people are becoming more public in their articulation and in their efforts to make change,” she continued.
Heumann has been quite public as of late; 2020 was a busy year for her. She published a memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, and was featured prominently in the award-winning Netflix documentary Crip Camp.
Crip Camp, co-directed, co-produced, and co-written by Jim LeBrecht and Nicole Newnham, tells the story of Camp Jened, a summer camp for teens with disabilities during the 1950s-1970s. Heumann, who uses a wheelchair after contracting polio at 18 months old, found a community of like-minded peers at camp.
“My camp experience was really important because it was an age appropriate time where I was with other kids my age who had disabilities, and on some level the disability didn’t matter because we were all the same age and going through similar experiences, being away from the family and learning how to begin to be more independent in decision making and things of that nature,” she said.
Many of the campers and counselors went on to engage in the emerging disability rights movement, including Heumann herself. Camp Jened provided young disabled people with role models to look up to during a time in which disability did not have much representation in public life. Heumann served in that mentoring role for LeBrecht when Heumann returned to Camp Jened as a counselor.
“It was really meeting [Heumann] and talking with her that really got me enthused about disability rights and really trying to change the world around me for the better,” he said.
“I don’t think that woman has lost an iota of strength and power since I met her 50 years ago. I’m happy that she and I are much closer friends now and that she’s still very much someone who’s important for people to know about and hear from,” LeBrecht continued.
Camp Jened and the disabled community that Heumann, LeBrecht, and others created there had a sizable impact on the movement for disability rights, as Crip Camp depicts. The movie received critical acclaim, even receiving an Academy Award nomination for Best Documentary Feature in 2021. Heumann and LeBrecht rolled onto the red carpet at the award ceremony in their wheelchairs. Because of Crip Camp’s disabled cast and crew, the Oscars stage included a ramp for the very first time.
“It was just a very empowering experience. I felt so very proud to be with them and so very proud to have been able to help make the film what it is,” Heumann said about attending the ceremony.
Heumann hopes the recent media attention related to the movie and her book has shown the general public why they need to learn about issues affecting the disability community.
“I believe that Crip Camp and my book … and many others [are] really resulting in more people asking the question of ‘Why didn’t I know this story?’, but hopefully going beyond ‘Why didn’t I know that story?’ to ‘What role am I not playing that I should be playing to be able to address the issues [in] these books and films and stories that we hear from neighbors and friends and relatives?’” she said.
One story that Crip Camp and Heumann’s memoir highlights is the fight for Section 504 of the Rehabilitation Act, the first federal legislation to protect the civil rights of people with disabilities. Heumann helped lead a sit-in of the Department of Health, Education, and Welfare (HEW) building in San Francisco that lasted for 28 days in 1977, making it the country’s longest sit-in at a federal building, a record the protest holds to this day.
Maria Town is the President and CEO of the American Association of People with Disabilities (AAPD), a leading cross-disability rights organization. She called the 504 regulations “one of the reasons the disability community has comprehensive civil rights protections.”
“Just thinking about the educational access 504 facilitates for so many people, I feel like most folks don’t quite understand … just how prevalent 504 is in schools, but also 504 provides the basis for the ADA [Americans with Disabilities Act],” Town said.
Getting Section 504 passed did not come easily. Close to 150 people participated in what was one of the first large-scale demonstrations by disability activists. The number of protesters increased throughout the occupation as more people joined the cause. A community formed among the group of disabled people as they refused to leave the building in order to make the government recognize their civil rights.
Lynette Taylor, whose first language was American Sign Language (ASL) because she was raised by her Deaf mother, was in college in San Francisco at the time of the 504 protest. After finding out that the group occupying HEW needed an additional ASL interpreter, she dropped out of college to participate in the protest.
“It was the most amazing experience of my life. It was also being in a world where everybody’s body in relationship to space and relationship to language and relationship to architecture was so different … so everybody was learning how to build a world around each other’s needs,” Taylor said.
Most of the participants had not packed supplies for what turned into a month-long sleepover. The group of disabled people slept on the marble floor, on stairwells, and even in employees’ offices. The San Francisco group found the strength to stay inside, even when simultaneous protests at other HEW buildings across the country all ended.
The 504 protesters received food and assistance from outside groups like the Black Panther Party, Delancey Street, and the United Farm Workers, which helped them succeed in their mission and demonstrated widespread support for disability rights.
“When we were having those demonstrations, we were able to explain not only the importance [of 504 and disability rights], but to get many of these groups to really step up and look at doing more than just writing an endorsement,” Heumann said.
Heumann and a select group of San Francisco protestors traveled to Washington, D.C., and HEW Secretary Joseph Califano eventually signed the 504 regulations into law. What stood out the most to Heumann about the protest was the diversity of the participants.
“I think it was a maturing of our knowledge and our efforts and the camaraderie that existed, and how the circle of people that were engaged reflect … people with different disabilities, different racial backgrounds, different sexual orientations, as a part of the effort to get these regulations signed,” she said.
As Taylor explained, Heumann “changed the world and still does. She is a force.”
Referring to Heumann’s leadership during the protest and beyond, Taylor said, “It’s direct, clean, razor sharp, intellectual, and fully committed and authentic. There’s no bullshit – fully committed and authentic. I mean, do you know how rare that is in a leader? Her whole life is built around just making lives better.”
Heumann still actively works to improve the world at age 73, with plenty of projects on the horizon. Up next: turning her memoir into a movie. Heumann is passionate about improving media representation of disability, even publishing a report on this topic during her fellowship at the Ford Foundation.
Around the time that Heumann left the federal government after Democrats lost the 2016 election, the Ford Foundation realized that they needed to devote more resources to disability rights in what Heumann called “serendipitous” timing. Darren Walker, then-President of the Ford Foundation, called Heumann to ask if she would like to be a Senior Fellow, which came with the funding and support to carry out any project she desired.
“As the paper shows, we were basically laying out what the problem was: lack of representation of disability,” Heumann said. “There was a little bit of information that was out there that basically showed such underrepresentation of disability in media that when disability was in fact being represented, it was typically not by disabled individuals.”
Heumann convened meetings with groups of disabled individuals working in media, like LeBrecht and Tony Award-winning actress Ali Stroker, and media organizations like PBS, Channel Four, and BBC. After hosting conversations with a wide variety of stakeholders, she wrote the paper along with researchers Katherine Salinas and Michellie Hess.
“The purpose of the paper was the result of the research and the convening, and it was really to lay out where we were, where we are, and where we need to go,” Heumann explained.
Movies like Crip Camp demonstrate the importance of depicting disability in popular media.
“It really took things like this film to show people that disability is indeed a civil rights issue, and that if you look at the world around us, that, that this is something that people just weren’t aware of because nobody was interested, nor did they think there was a story there,” LeBrecht said.
Heumann has ventured into the media landscape herself, hosting a podcast and video series called The Heumann Perspective. She hosts a wide variety of guests on the show, from Andrea Dazelle, a disabled nurse and activist, to Wesley Hamilton, a paralyzed athlete and entrepreneur featured on a recent season of Queer Eye, to Rebecca Cokley, the first Disability Rights Program Officer at the Ford Foundation.
“I think I try to allow the personality of the person we’re interviewing to come forward and to share information about who they are, what they’re doing, what their experiences have been as disabled individuals,” she said.
As if she weren’t already busy enough, Heumann also serves on the board of various disability-focused organizations, including the United States International Council on Disability, Disability Rights Education and Defense Fund, and AAPD. Heumann helps AAPD formulate its positions on legislation and policies affecting the disability community and represents them in publications and at events.
“I like being involved with boards of directors, because it helps me be informed and meet with a lot more people where we all have a similar interest,” Heumann said.
Heumann thrives when she forms connections with others. No matter how many projects Heumann works on or accomplishments she achieves, what matters the most to people who interact with her is her dedication to mentoring the next generation of activists, like Town and the rest of AAPD’s staff.
“The thing that I really appreciate about Judy is that she believes in me and in our staff, and so she’s always pushing us to step into the big deals that we are,” Town said.
Town credits Heumann with paving a path for disabled people to hold positions of power and make a difference.
“One of my values is that people who are most deeply impacted by policies need to be creating the policies, and so for Judy to go from being a student who was denied access to inclusive education to then running the Office of Special Education and Rehabilitative Services for the president of the United States is pretty remarkable,” Town said.
“She’s such an incredible model for how you can transform not only your own personal outcomes but your career, and the outcomes [for] so many other people,” she explained.
Laura Rauscher was a disabled college student when she met Heumann at a party in Berkeley, California, in the 1980s. At the time, Heumann was working as the deputy director at the first Center for Independent Living.
“I think from that moment on, she kind of took me under her wing and made me kind of her little prodigy in a way, so I really felt blessed,” Rauscher said.
Rauscher worked for Heumann as her administrative assistant after college, but Heumann was more than just a boss; she became a support system. She assisted Rauscher personally in a variety of ways, including letting Rauscher live with her for a period of time and eventually recommending her for a fellowship through the National Council on Disability, which launched Rauscher’s career.
Rauscher was the Director of the Massachusetts Department of Public Health’s Office on Health and Disability before she started her current position as Director of the Office of Disability Services at Smith College and Adjunct Professor in the Smith College School for Social Work. She credits Heumann with motivating her to work in disability policy.
“It [would] be easy to look at Judy and see these high-profile things that she’s worked on,” Rauscher said, referring to Heumann’s role in the passing of Section 504 and the Americans with Disabilities Act, among her other achievements.
“But to me, Judy’s legacy is really me, and you, and all of the people that she took one minute to listen to and connect and say, ‘Oh, you have this great idea. You need to know this person,’ and the work that’s been done because she made those connections for people,” Rauscher continued.
Heumann considers the formation of these relationships to be key components of her life’s work.
“I see my work as being driven by my view that advocacy is critically important and that networking is very important and that really encouraging younger, disabled people and disabled people across the generations is really important – to allow people to view themselves as people who can contribute,” Heumann said.
Heumann has impacted countless lives, both on a structural level by leading the fight for disability rights, and on a personal level by serving as a mentor and a friend to disabled people of all ages. If and when Heumann does retire, she can take pride in knowing that she formed a collective movement that continues to follow her lead.