Judy Heumann sitting in her wheelchair, wearing a red sweater. Behind her TED is in large red letters.

Until now, I have never lived in a world where Judy Heumann, Queen Mother to the Disability Rights Movement, didn’t exist. Nor would I have wanted to. She came into my life in the most generous way in 2016, though, even as a stranger, she impacted my life more than anyone else (fighting for me before I was born), with the sacrifices she and countless fellow advocates made to ensure that all people with disabilities were built for. Throwing her body up capital steps and in front of city buses – so everyone could have access for generations to come. As the Oscar nominated Crip Camp makes clear, without her, there would be no 504 or ADA, no fast pass at Disney, no accessible buses or bathrooms. Her courage and advocacy before my time, is a large part of the reason I have always been able to say my disability was a blessing. I’m grateful for all she did to make sure that all felt welcome. She never retired because she loved her work and knew that there was so much more still to do.

Whenever someone I love dies the first thing I do is try to remember their voice. Judy’s voice was so strong, simply unforgettable. And in her case, her voice doesn’t just belong to me and what remnants I have her in my phone; her voice is immortalized by history and it’s what she will be known for by generations of admirers and strangers; but for those she loved her legacy was also her leadership through encouragement, it was her generous heart, her laser pointed questions, her laughter, and her willing ear.

It was impossible to lie to Judy. You got the sense that she would smell it like bad lox if you did. That was the New Yorker in her – the no B.S. city girl who loved bagels and the truth. Her personal legacy is the generosity of her mentorship and allyship she gave enthusiastically but privately to the next generation and her peers.

She was an Oscar nominee, a multi-presidential appointee, and true leading lady, but amazingly she was always more interested in you – in your life and in celebrating your victories, than she was in telling you about her own. She did not need to regale you with tales of her glory days; they were still in progress. She had nothing to prove and everything that she had: her enthusiasm; her heart, she gave to us: the family of advocates and eager students, the next generation.

Judith Heumann and Xian Horn with her arm around Judy sitting at a table during their first one-on-one in 2017

Judy never took herself too seriously, or lost her curiosity or humility. She asked me to show her how to send GIFs and MEMES and thought I was a genius whenever I sent her a particularly good one; she was excited about whatever we, the next generation, were excited about even when it wasn’t about accessibility or human rights. When my assistant and I got invited to a private Charlie Puth concert this fall, she had no clue who he was. But she made sure to tell everyone she could to find out more about him and so that people who didn’t even know us could share in the excitement of it for us – especially since I mentioned Charlie was a nice Jewish Boy 😉

Judy’s last message to me was a birthday wish and a picture of us (above) she found on her phone from our first one-on-one. Our last call was a promise for a longer heart-to-heart in the coming days (which were swallowed up by birthday busyness and now bittersweet feelings of regret, which of course, Judy would tell me to let go of). Though we texted briefly just two days before her sudden passing, I owe her a call that I won’t get to make for a while. And I’ll miss her terribly until then…

Still, I will be talking to Judy lots anyway. Truth is: in the days since she passed, I have been in absolute denial…but I realize that it’s because I resist the notion that she will ever be gone. I truly believe when we lose people we love physically, that they exist within and become a part of us; they are all around us, in and a part of everything. I believe she’ll be with me and all the multitudes of people she loved and touched more now than she ever was before, and her work and love for each of us will never end. I hope that brings others who are devastated, like me, comfort. I pray that it motivates us to keep living as she lived: listening well, using our voices, supporting and making space for others, working for worthy causes, throwing away our ego, and creating moments of joy just as she did until her very last day. Judy, thank you for everything you gave us; we love you forever. Talk to you soon!

P.S. If you’d like to hear more from Judy herself, please honor her by reading her memoir; Being Heumann: An Unrepentant Memoir of a Disability Rights, watching her show the Heumann Perspective on YouTube or enjoy the Academy Award nominated film Crip Camp on Netflix!


  • Xian Horn

    Beauty and Disability Advocate, Teacher, Founder

    Xian Horn is a joyful half-Asian woman with Cerebral Palsy, who serves as a teacher, speaker, beauty advocate, blogger, and Exemplar for the AT&T NYU Connect Ability Challenge toward the creation of Assistive Technology. Xian was named Women's eNews' 21 Leaders for the 21st Century in 2017 and in Walker's Legacy Power 15 in 2018 and the first-ever Positive Exposure Rising Leader Award in 2021. Give Beauty Wings’ tailored Self-Esteem programs began at NYU's Initiative for Women with Disabilities, and serve as a bridge to promote greater self-love and discovery, purpose, and connection. She aims to reconceptualize disability representation in fashion, beauty, and media and move accessible design forward by working with Anna Sui, Derek Lam, Parsons, Pratt and F.I.T. Xian is invested in contributing positively to our concept of self-esteem and the collective purpose, especially for girls and women. She is the founder of the “Give Beauty Wings” Self-Esteem program (and subsequent non-profit) which originated at NYU's Initiative for Women with Disabilities, the Jewish Community Center Manhattan, and nationally. Xian is an award-winning speaker and contributor at Forbes and Ariana Huffington's Thrive Global and has been featured in The White House Blog's Women Working To Do Good series, the New York Times, NPR, Fast Company, NBC News, Fox 5, and Yahoo Life among others.