A Trailblazer For Disability Rights

It is with heavy hearts that we remember the life and legacy of Judith “Judy” Heumann (1947-2023), a champion for the rights of disabled people and widely known as “the mother” of disability rights. She was also known by many as a friend, mentor, and role model. Her dedication and unwavering commitment to the disability rights movement spanned over the course of five decades and paved the way for progress that has positively impacted the lives of countless individuals all around the world. She worked in both the public and private sectors to ensure that disabled people have equal access to education, employment, transportation, and other essential services. In the words of actress and advocate, Selma Blair, one of many whose lives were positively impacted by Judith Heumann’s tireless advocacy, “We are Judith’s legacy.” Blair goes on to emphasize the importance of continuing Heumann’s work, saying “Those who want to continue the work have to put on the cloak of Judith now.” She credits Heumann with enabling her to live a more fulfilling life, saying, “I would not be here today without her work, allowed in public places with my [service dog].” Blair also admires Heumann’s leadership skills, saying “She knew how to do the work, and the way she could rally people was undeniable.” Blair states that “she deserves people to know about her; people deserve to know about her. She is a huge figure in our America, and things would be very different for everyone without her.”

In 1949 in Brooklyn, New York Heumann contracted Polio and became a wheelchair user. At five years old, she was denied the right to attend school because they considered her a “fire hazard”. Despite her family’s advocacy, the school did not accommodate her. So instead of going to school, for three years she was given home tutoring twice a week, for about an hour each visit. This experience fueled Heumann’s passion for disability rights and advocacy, and she spent her life fighting against the discrimination and barriers that disabled people face in education and other areas of life. Her efforts have helped to promote accessibility and inclusion in schools and universities, opening doors for generations of students with disabilities to access the education they deserve. Heumann was the first wheelchair user to be hired as a teacher in the New York City school system.

One of Heumann’s early experiences that shaped her activism occurred when she attended Camp Jened, a summer camp for disabled teenagers in upstate New York. At Camp Jened, Heumann found a community of other disabled people with shared lived experiences. She also found that the camp’s directors and staff were supportive and believed in the potential of people with disabilities to live full and meaningful lives. These experiences at Camp Jened sparked Heumann’s lifelong commitment.

In 1977, Heumann led a group of disability rights activists in a 28-day sit-in protest at the San Francisco Federal Building, demanding the implementation of Section 504 of the Rehabilitation Act. The sit-in was the longest occupation of a federal building in U.S. history, and it resulted in the first-ever disability civil rights legislation that prohibited discrimination on the basis of disability in federally funded programs and services. Heumann’s leadership during this protest and her subsequent work as the Special Advisor for International Disability Rights at the U.S. State Department during the Obama Administration, cemented her status as a leading disability rights advocate and trailblazer. Barack Obama paid tribute to her work on Twitter , “Judy Heumann dedicated her life to the fight for civil rights—starting as a young organizer at Camp Jened and later helping lead the disability rights movement. Michelle and I were fortunate to work with Judy over the years, and are thinking of her family and friends.”

In 2014, Judith Heumann was highlighted on the television show “Drunk History,” which features narrators retelling historical events in a humorous and often irreverent manner. Heumann (played by Actress Ali Stroker) appeared on the show recounting her experiences as an activist, and this episode quickly became a fan favorite. Despite the show’s often comedic tone, Heumann’s story was treated with respect and admiration, highlighting her lifelong commitment to fighting for the rights of people with disabilities. The “Drunk History” episode brought attention to the important work of the disability rights movement it also helped to raise awareness of the ongoing struggle for accessibility and inclusion for people with disabilities, reminding viewers that there is still much work to be done.

A friend of Heumann’s, Keah Brown, Author and Activist, says, “I actually found out about Judy and her work through a drunk history episode, and I remember being in awe of her. When we met in person, it felt like a full circle moment, a dream come true. A chance to give an elder flowers while she could smell them. My favorite thing about our friendship is that we shared this understanding of who we were to the world and who we got to be to each other. I really appreciated that there was always something to laugh and smile about with Judy whenever we were in conversation or when we saw each other in person. There was always something to be excited about and look forward to. I think often of the time I was in Maryland working on a musical and I met with Judy for lunch, we were walking over and I could feel myself getting tired, but desperate to keep up and she offered me a handle on her wheelchair so that I could take some of the stress off my legs. I know that her memory is already a blessing because her life was too.”

In 2020, Heumann released a memoir, co-authored with Kristen Joiner, titled “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.” The book chronicles her life and work as a disabled person, from her childhood in Brooklyn to her experiences fighting for disability rights on the national and international stage. The book is a testament to Heumann’s perseverance, determination, and resilience in the face of adversity. It has been widely praised for its honesty and insight.

In July 2021, Apple Original Films announced that they landed the rights to a package based on Judy Heumann’s bestselling memoir. Siân Heder, is adapting the film to direct. Stroker is set to star as Heumann. Heder will produce the film with David Permut through Permut Presentations alongside Heumann’s managers John W. Beach and Kevin Cleary of Gravity Squared Entertainment. Joiner and Heumann were set to both be executive producers. Beach says, “while we’re devastated by Judy’s passing, her actions truly impacted the whole world and we’re blessed to have worked with Judy for over seven years. While still heartbroken, we’re happy to continue her work and get her legacy out to the world”.

Another major achievement of Heumann’s career is her role in the production of the documentary film “Crip Camp: A Disability Revolution.” The film, which premiered at the 2020 Sundance Film Festival, tells the story of a summer camp for disabled teens in the 1970s and the impact it had on the lives of the campers who attended. Heumann is featured prominently in the film, as she was a camper and counselor at the camp and played a key role in the disability rights movement that emerged from the camp’s community. The film has received critical acclaim and has helped to raise mainstream awareness of the disability rights movement and the societal struggles faced by disabled people. Jim LeBrecht, co-Director alongside Nicole Newnham of “Crip Camp”, said, “meeting Judy at the age of fifteen at Camp Jened set the course of my life. She showed me that it was possible to fight back at all of the discrimination and barriers I was facing. She gave me the tools to understand that I could join the fight and make a difference.”

In 2021 Heumann launched her podcast, “The Heumann Perspective”, a podcast that hosted “conversations around disability culture, art, entertainment, policy and advocacy are sure to light a rebellious fire under you to fight harder for all people”. Judy had conversations with Disabled talent such as Lachi, Challa Man, Spencer West, Chelsie Hill, Ruby Bridges and many more. Kylie Miller who worked as an assistant for Heumann and producer of the podcast, says, “one of my favorite things about Judy was that she considered everyone a friend. She was only interested in connecting with people on a deep level. Surface level just wasn’t natural for Judy. Whenever she would meet new people— whether it be on a work call, at the airport, or on a random sidewalk— she always asked for everyone’s name, where they were from, and other questions about their personal background. She also habitually took down everyone’s contact information. And I mean everyone. Judy put a new meaning to the word “networking” as she would constantly connect people she thought should know each other and work together. It goes without saying that Judy had SO much more to share with the world. She always said the work we were doing together was “simmering to a boil.” I know that will continue from the fire Judy ignited with her relentless advocacy. I am so grateful to have worked so closely with her to be a small part of the giant mark she has left on the world.” Lachi, Singer/Songwriter, Activist, founder of RAMPD and a close friend of Heumann’s says, “[Heumann] encouraged me to start RAMPD—now an award-winning organization amplifying disability in the music industry—back when it was just an acronym. She connected me to all the right people to get started, and her encouragement for my work never ceased. And as the months turned to years, I always had Judy to call. I called her in tears, with joy and she called me for fashion advice! I’m definitely privileged that ‘the great’ Judy Heumann, who helped spark my career-advocacy, continued to tell me how proud she was of me and all of us in the new generation of disability advocacy. I am so honoured to have marched beside her, shared stages with her, and to have called her a colleague, mentor and friend.”

In 2022, Heumann worked with Fable, an online platform where digital teams can engage disabled people in research and on-demand user testing. Heumann, partnered with Fable to create a course, “Advocating for Work” for their Fable Pathways program. Fable Pathways is a a skill development program for disabled people interested in working in the tech sector. Camila Kann, Heumann’s Talent Manager at C Talent who secured the Fable booking for Heumann says, “I was always blown away by Judy’s curiosity and how it was rooted to uplift and connect people and communities. She always had a magical way of making those around her think differently and really look at things in a new way. Judy’s smile and laughter always gave me a strong sense of security. Her kindness so powerfully and seamlessly transformed anyone she spoke to. Thirty minute conversations easily turned into two hours because of her passion and her dedication, it was beyond this world.”

“Judy taught me how to love others. She loved so intensely and cared for other so deeply in so many different ways. We would bring each other challah, she would invite me to play board games with her, she would sing with me and dance with me. That is what I will miss the most. This intense love and care for others is at the core of all not only all her work but how she lived her life. To work with and be friends with Judy was the honor of a lifetime.” said Rebecca Howell, Past Assistant for Heumann

Heumann’s work and advocacy has had a profound impact on the disability community and on society as a whole. Her tireless efforts to promote disability rights, accessibility, and inclusion have helped to create a more just and equitable world. She will always be remembered as icon, legend and role model who changed the world, but most importantly, Heumann will be remembered as a dear friend to everyone she met.

“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,” as stated on Heumanns website.