Judy Heumann sitting in her wheelchair on stage at TED with the words overlayed, "Remembering Judy Heumann 1947-2023."
News | Written By Nora Genster, Sr. Director, Employment Transformation Collective

Remembering Judy Heumann, 1947-2023

Nora Genster, senior director of the Employment Transformation Collective at Northwest Center, shares her remembrance of legendary disability rights activist Judy Heumann as a mentor and friend:

Judy was a titan of activism and a friend. In addition to her legacy as an activist, she also served as an incomparable mentor to the next generations of disability rights leaders. I have been struck by the number of my friends and colleagues who have been able to share personal memories of Judy: of love, care, and concern for the future of disability rights, but also for the people making it happen.

I met Judy fresh out of college, when I was just beginning to understand my disabled identity. At the time, she was serving as Special Advisor on International Disability Rights for the U.S. State Department. I emailed her cold and said that if I ended up in her role in at some point in my career, it would have been a life well led.

Of course, at the time I did not know her background. It was only after I had met her in her Foggy Bottom office at the Department of State that I truly learned who she was. Humbled is an understatement.

Judy served as a personal mentor, offering guidance, motivation, comfort. I believe her greatest strength was her humanity. She refused to separate her person from her work. She demanded that, when senators and shop owners alike denied national rights or storefront accommodation, they look her in the eye and tell her that they were choosing to deny her, not some imagined disabled person. She was strength through vulnerability.

At a late 2019 award dinner in DC, she opened her remarks with, “I am going to cry, and you are going to deal with it.” I had and have not since seen myself so clearly in another leader.
What is, perhaps, troubling about her passing is that many, many of her talking points ring as true today as they did in the ’70s.

In the documentary Crip Camp, Judy shares:

“I’m very tired of being thankful for accessible toilets. If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”

I still find myself being “thankful” for accessible toilets. For access. For basic accommodation. There is so much left to do.

I would not be where I am today without Judy. Many disability advocates would not be where they are. Indeed, the nation and the world have been marked for the better by Judy’s legacy. Her humanity, grit, humor, galvanizing ability and love for her people.

She demanded a better world for disabled people. I hope we can, this week, reflect on how we are answering that still urgent demand. What more can we ask of ourselves?

For my disabled colleagues, for whom work and life are often tangled, as they were for Judy: It is hard. That’s the truth. We can honor Judy’s legacy, and ourselves, by embracing that challenge, allowing vulnerability, caring for each other, and expecting our colleagues, disabled and not, to value and uplift that humanity as central to achieving our mission.

I will miss Judy dearly.

Nora Elena Genster
Senior Director, Employment Transformation Collective

(Photo of Judy Heumann above via JudithHeumann.com.)