Written by Celestine Fraser, published on 18 July 2023
Image description: Judy Heumann, a white Disabled power wheelchair user with short, brown hair, on stage at TED. Judy is wearing a red wool cardigan over a cream turtleneck and black pants. She is smiling brightly. Source: TED.
When Judith “Judy” Heumann passed away on March 4th 2023, the Disability community was in shock. Affectionately known as the “Mother of Disability Rights”, Judy Heumann had been a vitally important figure within the international Disability rights movement for decades. As the Disability community mourned Judy and grappled with the enormity of her loss, many of us shared the same feeling: we had imagined, somehow, that Judy would always be here – a voice of reason, resolute but kind, guiding the future of the movement and helping us to find our way forward.
July marks Disability Pride Month, and while Disability pride should be celebrated all year round, we acknowledge that this month provides an opportunity to bring more visibility to the conversation. And who embodies Disability pride better than the “mother” of Disability rights herself? Today, we honor the late Judy Heumann as her absence is still very much being felt.
From her pivotal role in the passing of the American with Disabilities Act (ADA) in 1990, to her use of media as a means for activism in more recent years (e.g. documentary Crip Camp or her podcast The Heumann Perspective), Judy’s impact on international Disability rights has been immeasurable. Through conversations with actress and activist Selma Blair, Disability Program Officer at the Ford Foundation Rebecca Cokley, singer and RAMPD founder Lachi, as well as filmmaker Jim LeBrecht, we reflect on Judy’s life’s work and how we might continue her legacy.
We’d also love to learn from you: how did Judy Heumann change your own life? Please DM or tag us on social media @TiltingTheLens, or email us at email@example.com.
This is how we remember Judy Heumann.
She was unapologetic about her Disabled identity
Throughout her life, Judy was unwavering in her belief that it was an unjust and inaccessible society – and not her body – which had to change. Her conviction in the social model of disability was the backbone of her activism, and it also empowered other people to embrace their own Disabled identity. “I will strive to be as undeniable as Judy,” says Jim LeBrecht, filmmaker and co-director of Crip Camp. “Judy has been a big influence in my life ever since I met her at Summer Camp (Jened) in 1971,” he says, referencing the summer camp for Disabled teenagers made famous by its appearance in Crip Camp. “As a 15-year-old, learning about her and from her made me realize that there was a better world for people like her and me if we fought back. I learned to be prideful for myself and that I was part of a larger community than just the kids at camp.”
Decades later, Selma Blair watched Crip Camp. Seeing a young, self-assured Judy Heumann onscreen transformed her own relationship with her Disabled identity: “It was her clarity and pure belief in herself and her community that comforted my own unknown fears and ignorance around disability, wheelchairs and even aging.” Selma was inspired by how “Judith, in total acceptance of herself, wherever she was in her life, refused the status quo.”
Lachi agrees that Judy shared a “beautiful message of self-acceptance… so that little boys, little girls, little everyones can see themselves, no matter what body they come in, no matter what mind they come in.” Judy’s message of self-acceptance was also felt by Rebecca Cokley, who met Judy at the age of six, “on the back of [her] godmother Ann Cupolo-Freeman’s wheelchair driving through the streets of Berkeley.” Judy’s early influence on Rebecca was formative, and today Rebecca insists: “I don’t have a memory of my life without Judy as a presence in it.”
Image description: A black and white picture depicting Judy Heumann, a white power wheelchair user, amongst other Disabled demonstrators. A banner above their heads reads: “Injustice anywhere is a threat to justice everywhere.” – a quote by Martin Luther King Jr. Source: judithheumann.com
She encouraged collective action
Although Judy was renowned for her leadership – most notably during the famous Sit-in over Section 504 – Jim LeBrecht emphasizes that she “didn’t do this [work] alone.” To make social change, it takes a village, and Judy had a talent for organizing the community and encouraging collective action. Jim explains: “As with me as a young man, she seemed like the pied piper of the Disability rights and independent living movements, attracting so many brilliant organizers, thinkers and fighters.”
Lachi calls her a “connecto-vert”, explaining that “it was her advocacy, connecting folks to lift each other up.” She had a gift for friendship, an ability to uplift other people, and she loved to bring together members of the community who might not have met: “Her last email to me was her introducing me to the great Kia Brown who’s also just an amazing badass woman,” says Lachi. “That was just who Judy was, constantly connecting people.”
Video description: Judy Heumann’s TED Talk “Our fight for disability rights – and why we’re not done yet.” Judy Heumann, a white Disabled power wheelchair user with short, brown hair, on stage at TED. Judy is wearing a red wool cardigan over a cream turtleneck and black pants. She is smiling brightly. Source: TED.
She had a passion for Disability culture
Later in life, Judy embraced the arrival of new technologies and explored a different kind of activism: storytelling. In just her last few years, she delivered a TED talk, featured in Crip Camp, published two memoirs, created and presented the podcast ‘The Heumann Perspective,’ grew a sizable audience across every social media platform, and even released a line of merchandise. According to Lachi, Judy “not only made a global impact on Disability rights, but created space for our new era of Disability culture, identity pride, and unapologetic visibility.”
Jim agrees: “In her later years, working with the Ford Foundation and then in her own videos, she delved deeply into storytelling.” Jim, who is the co-founder of the organization FWD-Doc (Filmmakers with Disabilities in Documentary), recalls that “Judy was on a Zoom feed at the initial convening that sparked FWD-Doc in 2018.” She was also a key player in the production of Crip Camp, both “as a central part of the story of the documentary and as a resource of knowledge and encouragement to me and Nicole Newnham as we were directing and producing.”
Judy had a lifelong love for Disability culture, and she was always encouraging other Disabled people in the arts to pursue their passions. “She encouraged me to set up RAMPD (Recording Artists and Music Professionals with Disabilities),” says Lachi, who is its founder. “She was the first person I spoke to about putting that organization together.” Later, when Lachi joined the Grammy’s Board, “doing accessibility for the Grammy’s”, Judy gave her invaluable advice, again. On July 25th, Lachi will release “Lift Me Up”, a new song with James Ian and Gaelynn Lea which pays tribute to Judy and her community.
She left a powerful legacy
Of course, Judy’s legacy lies in our legislation: namely, in the 1990 passing of the ADA, which has forever changed the lives of Disabled Americans. But we could also argue that she was crucial to the idea of a modern Disabled identity: she encouraged a disparate Disabled population to come together, engage in politics, and exchange in culture. Today, Selma feels that “we are the legacy, this Disabled community… building bridges and ramps and taking pride in our own visibility. That’s all the mark of Judy.”
“What I’ve taken from Judy’s legacy is to seize the moment,” says Rebecca. “She would remind me that we have a limited time to do the work, so you demand the time and the spotlight that the community needs, in that moment… If it means putting a foot in the door before it slams, snagging a reporter after a press conference, or showing up and putting it on the line for a movement partner, you do that. Because the chance may not come again.”
But for all her dogged advocacy, Judy was also acutely aware that activism can be tiring work. Jim insists that, like Judy, “We must find and create the joy that exists in this work.” To be truly effective, activists need to prioritize time for pleasure or self-care. This might not look like the activism of protests or sit-ins, but in the face of ableism or structural oppression, finding joy can be a radical act. “Don’t just talk about the movement but share the treats and sweetness in life as you find it,” Jim explains. “Judy would be proud of you if you did just this.”