“All Voices Matter” – Remembering Judy Heumann (1947 – 2023)

A photo collage containing eight different photos of Judy Heumann with Bob Williams, Jordyn Zimmerman, Tauna Szymanski, and others

Like others in the disability community and around the world, everyone at CommunicationFIRST is devastated by the untimely loss of our badass colleague, Judy Heumann. Judy was elected to our Board of Directors in June 2019, months before CommunicationFIRST publicly launched. She played an indispensable role in helping the organization raise its profile, securing grant funding, and, of course, making connections. She introduced herself to our community in this guest blog interview. And she kicked off CommunicationFIRST’s occasional webinar series by having a chat with AAC users. Given her extraordinarily busy schedule, it always felt significant when she attended each Board meeting, which she did nearly every month! 

In a text in the last year, Judy said, “I really believe in this organization so much!” She later wrote to our members:

When I was asked to consider serving on the CommunicationFIRST Board, I said yes, because I believe communication is unequivocally essential to every individual throughout the world. I remember when I first entered a segregated classroom with children who mainly had cerebral palsy. Even though I was only 9 years old, I was struck by the low expectations people had of many of my friends, those whose speech was not as clear as mine or those who were presumed not to be able to communicate at all. I was from that moment driven to make sure that all voices mattered. This was in the 1950s.

CommunicationFIRST will continue Judy’s fierce advocacy for equal access, rights, opportunity, and dignity of the over five million children and adults in the United States who cannot rely on speech alone to be heard and understood, due to disability or other condition. All voices matter.

We invited members of our staff, Board, and Advisory Council to share personal anecdotes and reflections about Judy as they wished. May her memory be for a blessing. May her memory be for change. May her memory be for a revolution.

  • Bob Williams, Policy Director: Our nation and the world has lost one of the greatest human and civil rights leaders and visionaries of our day—indeed of the last half century and more. For those of us who knew, worked with, and loved Judy Heumann in the U.S. and across the world, we have lost a dear and irreplaceable friend and sister. She worked constantly to secure the right and ability of ALL people, especially those who require AAC, to express ourselves, be heard, and seize control of our own lives and futures. It was no surprise but a supreme joy to me that she helped found CommunicationFIRST and served on its Board. Judy believed fervently in the urgency and importance of the work we do. This is a time of sadness and reflection. She would insist it also be a time for rededication and pushing forward.” [Bob also delivered a eulogy at Judy’s memorial service on March 8. A video recording and the text of his remarks can be accessed here.] 
  • Jordyn Zimmerman, Board Chair:  It has been such an honor to serve on the Board of CommunicationFIRST with Judy, and to share space in so many ways. I first met Judy at ACI during the summer of 2018. The next summer, while I was an AAPD intern in DC, we met up multiple times as she invited me to meals or her apartment. She made sure I was connected to Bob Williams, India Ochs, and others. And every time I’ve been in DC since, Judy has also always invited me to join her at synagogue. Most recently, as I transitioned into the role of CommunicationFIRST Board Chair in August 2022, we became closer and Judy would call, sometimes at 5 or 6 AM (I received many voicemails which said, “Hi, umm it’s Judy. FaceTime me when you can”) eager to chat. She quickly learned to text me, too!! It’s hard to explain what that support meant, but that was Judy. She was so generous with her willingness to listen and give advice about everything. She spent hours on Zoom with me and my fellow Board members. Judy recently told me that my smile is really special, to take up even more space as a leader, and make a bigger deal. Judy has been so generous with her willingness to listen, share, and learn. Thank you, Judy, for fighting for us and teaching us along the way.” 
  • India Ochs, Past Board Chair:  “Above all else, Judy was humble and generous. When I first met her at the State Department, she was just another colleague that I saw at an affinity group meeting. As we chatted in the hallway, she made no reference to her position [as the first Special Advisor for International Disability Rights at the U.S. Department of State], let alone her extensive background of activism. I appreciate that she simply wanted to get to know me. Speed up a decade later, now that I know just how powerful she was in all she believed in, I have an even deeper appreciation for the times she sought my advice, and for inviting me to be on Biden’s policy committee. Yet, the most special moments were simply when she asked how my son was doing. Thank you Judy for being my friend.”
  • Pancho Ramirez, Board Member:  “I didn’t have the opportunity to meet Ms. Judy Heumann in person, but I did meet her virtually. She was a leader of CommunicationFIRST’s Board of Directors, which I’m proud to be one, as well. I think she was a true hero and role model! She paved the road for us to follow and keep advancing and protecting people with disabilities, whatever disability may be. Thank you, Ms. Judy. You will be remembered forever.”
  • Angelica Vega, Advisory Council:  “Judy Heumann was such a phenomenal person. Her impact on disability rights, at both a domestic and international level, will continue to influence people for generations to come. One of the most amazing things about her was that despite being such a prominent public figure, she always found time to continue mentoring students. When I was completing my fellowship at RespectAbility as a Public Policy Fellow, she spoke to our cohort about disability advocacy. I was able to ask her questions about her life as well as her time as Special Advisor for International Disability Rights. Meeting her had a major impact on me. At the time, I was still new to disability advocacy and unsure about my path. Her thoughtful words built confidence in me and encouraged me to fight the good fight, as she did. She will truly be missed, but her impact will always be with us, forever. Thank you, Judy.”
  • Grant Blasko, Advisory Council:  I admired Judy already, but in 2020 when I read her book, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, I was extremely sick. It helped me to recover. Soon after, I watched the documentary, "Crip Camp,” and every television interview and webinar she did. The strength she showed, and the lessons I took from her long-game approach have influenced me so much. I will miss her charm and quick wit. I place my life’s purpose in the work we will continue to do in her memory, and I feel so grateful to have been in spaces with her.”
  • Tim Jin:  “I’ve only known Judy Heumann for a short period of time when we were serving on the Board together for CommunicationFIRST. I remember my special education teachers talking about her advocacy work and leadership in our community when I was in grade school and her ongoing push for disability rights and equality. When I told my teachers that I was on the same Board as Judy Heumann, my teachers, who are in their 80s, gave me their advice: “To captivate everything that Judy has to say and to learn from her present.” I never met someone who always had empowering words when she spoke. Whenever we joined a meeting together, I always got the feeling that I sat right next to a figure that was beyond me, advocating and striving for all disabilities. Like many of us, we were saddened about Judy Heumann’s passing. It took me a while to comprehend what my friends were texting me and I had to turn off the chatter because just like Rosa Parks who refused to sit in the back of the bus, Judy Heumann was our voice to everything that we have now. Even though many of us only know Judy Heumann from afar, we all learned from her by adopting her constant work to bring disabilities to the forefront and that is the reason why we have so many organizations advocating for our community.”
  • Rachel Kripke-Ludwig, Advisory Council:  “As a youth leader in the disability movement, Judy Heumann was my mentor and role model. Her body of work from establishing the disability rights movement to joining the fight for communication access has guided me my whole life. She was the person who I most admire in the journey to civil rights because nothing is more important than education.”
  • Maria Ott, Board Secretary:  “I feel incredibly lucky for the privilege of having worked with Judy on the CommunicationFIRST Board. Her mere example taught me so much. In particular though, I was mesmerized by the glow in her smile and the force of her words. Her generosity of spirit was tremendous and infectious. She struck a personal chord with me when she emphasized, in the kindest and most sincere way, that one of her biggest concerns was for the families of AAC users who faced the many obstacles getting their children the education they deserved. I felt her heart and it was both soothing and empowering all at once. I so admire her and her incredible accomplishments.”
  • Tauna Szymanski, Executive Director & Legal Director:  “I first met Judy in May 2017, at a special event at the US State Department featuring the disabled musician Gaelynn Lea. Judy was there as well, and we all had lunch afterward in the State Department cafeteria. Fast forward two years and on May 1, 2019, she invited me to her home to brief her and get her advice on a new disability civil rights organization I was helping to get off the ground. Shortly thereafter, she agreed to join our Board, and has been on it ever since. She was always looking for ways to support our mission and to contribute to the growth and success of CommunicationFIRST. Like so many other disability advocates, we were fortunate to call her a mentor, colleague, and partner in the fight for access and equity. She was so generous with her time, ideas, guidance, and connections. We will be forever indebted to her for her grace, leadership, mentorship, friendship, and humor.”
  • Devva Kasnitz, Advisory Council:  “May her memory be a blessing. The Pac Rim conference kicked off yesterday with a discussion on disability studies. Judy Heumann was scheduled to speak. She died while we were talking about the future of disability studies. A future we might not have had without Judy. Judy struggled with the vocabulary of disability studies. She wanted everyone to use plainer language and of course, that is a subject for debate in disability studies. Disability studies, particularly ‘critical’ disability studies, can intentionally underpin the nonacademic global disability rights and justice movements. Our day pondering the future of disability studies left me affirming that not everything about disability is disability studies, and that a disability studies perspective is creating new social theory, sharper problem definition, and better research methods that can contribute to the study of topics other than disability. I was looking forward to continuing my debate with Judy. I will have that debate about the utility and problems of academic language representing social movements with my students in Judy’s honor and I hope I can do justice to her perspective. No disability studies scholar’s death will be announced within moments on NPR. Now ask me how I feel about all these deaths—from Irv Zola, to Ed Roberts, to Linda Gonzalez, to Neil Marcus, to Hale Zukas, to Judy. I am mad and sad and determined to be more comfortable in study and advocacy and to blend them to create a diaspora of disability studies’ best ideas. How do we honor Judy? We need to take both individual and collective steps to us all ‘Being Heumann.’ When we meet in twos and threes we need to develop three or four opinions, after all, Judy was proudly Jewish. We can also honor Judy by being more intentionally and more carefully international. Dial back to her role in the trio with Ed and Joan Leon founding WID. The ‘W’ is ‘World.’ While the anthropologist in me looks to see what ‘disability’ means as a concept in other cultures, I do have Judy’s voice in the back of my head saying, ‘So what? What do we do?’ I will treasure that not-so-small voice and remember watching her in corners and hallways having intense one on one conversations with power while the rest of us danced.”
  • Ben Breaux, Advisory Council:  “The passing of Judith Heumann is a truly considerable loss as through her work she selflessly did so much for countless individuals. She was indeed a powerhouse advocate and individual.” 
  • Clarissa Kripke, Vice Chair:  “Judy Heumann’s wise guidance as a Board member of CommunicationFIRST was critical in developing it from a new nonprofit to an organization making major policy, legal, and civil rights impacts. Judy was a cross disability champion who donated her time, connections, and effort to people who cannot rely on speech to communicate because she knew that even within the disability rights movement we still have work to do to lift each other up.”

Memorial Service Details (including livestream): https://judithheumann.com/memorial-service-honoring-the-life-of-judy-heumann/ 

Tributes and Resources: https://bbi.syr.edu/2023/03/honoring-the-life-and-work-of-judy-heumann/

(Clockwise from top left)

Image 1: A selfie of a smiling Judy Heumann and Bob Williams at the National Zoo. Both of their faces are only partially visible in the selfie.

Image 2: A very young Judy Heumann and Bob Williams sit smiling facing the camera at a polished wood conference table with papers on it. A service dog is between them. Bob is wearing a gray blazer with a red bowtie. A young man is standing between them with his hand on the service dog. Judy and Bob are both smiling.

Image 3: A smiling Jordyn Zimmerman in black is holding hands with a smiling Judy Heumann, who is wearing a floral top. 

Image 4: Judy Heumann with Bob Williams. Judy is wearing a very colorful outfit and Bob is wearing a white blazer with a pink striped shirt and a dark bowtie. Judy has her left hand on Bob’s right arm and they are both smiling. 

Image 5: Michael Murray, Bob Williams, and Judy Heumann in the 1990s when Bob was Commissioner of the Administration on Developmental Disabilities and Judy was Assistant Secretary of Education for Special Education and Rehabilitation Services. 

Image 6: A black and white photo of a young Judy Heumann in the 1970s as she speaks into a microphone with the sun reflecting off her hair. She is wearing a winter coat with a “Sign 504” pin.

Image 7: Judy Heumann, Henry Claypool, and Bob Williams sit smiling facing the camera in their wheelchairs outside with green trees in the background. Photo credit: Tom Olin 

Image 8: Tauna Szymanski and Judy Heumann sit smiling facing the camera in Judy’s home in 2019. Judy is wearing a purple satiny top and Tauna is wearing a black dress with blue edges.

Image 9: Judy Heumann smiles wearing a COVID cloth face mask with the CommunicationFIRST logo on it upside down.

Center image: A flyer for a webinar hosted by CommunicationFIRST on July 17, 2020, called “AAC User Chat with Judy Heumann,” featuring images of Bob Williams, Judy Heumann, and Hari Srinivasan.