Our movement is in mourning

Remembering Judy Heumann, and how she changed us.
A line drawing portrait of Judy's face in outline. Short, full hair, glasses, dark eyes holding us, and a peaceful smile.
Goodbye Judy

Dear Debriefers,

Sometimes the news breaks your heart.

Judy Heumann passed away on Saturday, aged 75. She transformed the life chances of disabled people in the US and around the world.

We will mourn her for the rest of our lives.

One, that made a multitude

I only met Judy once. That's all she needed to touch your soul. She showed a respect and belief in me that I struggle to have for myself.

She gave time to so many of us, so generously. The photos I have are exactly like those everyone else has: smiles, laughter, caught in Judy's charisma. These moments are one of the treasures she left us.

Judy connected us. As she insisted, her story is one of community, and it's a community that she did so much to make. “At heart,” she wrote, “I am a networker and a convener.” She opens her autobiography:

“It wasn’t actually an ‘I,’ it was a ‘we.’ For any story of changing the world is always the story of many. Many ideas, many arguments; many discussions; many late-night, punchy, falling-apart-laughing brainstorms; many believers; many friendships; many failures; many times of almost giving up; and many, many, many people. This is my story, yes, but I was one in a multitude.”

Through these connections, Judy made coalitions and led protests that changed the place of disabled people in the United States and beyond. Her fierce vision of equality is reflected in policy and legislation worldwide. She changed what is possible for us and what we can believe in ourselves.

“We made a lot of progress”

The obituary from Joseph Shapiro traces Judy's life, born in 1947 in the US. She was the daughter of Jewish parents who escaped Germany before the Second World War. At five years old, she was, in her wheelchair, turned away from kindergarten because the principle saw her as a “fire hazard”.

Judy was indeed a hazard: a hazard to those she had to fight. She went on to change policy on education, lead the longest occupation of a federal US building, shape landmark disability legislation, and work across the world to promote disability rights.

When I asked her in 2017 if she was happy with the way societies had changed, she told me she was “not satisfied with progress, but we made a lot of progress”. She lamented the missed opportunities, not because of resources, but because people choose not to make a difference. “We're still spending a lot of time trying to convince people”.

Some of what she left us

Judy's memorial service will be held on March 8th, 10am Eastern Time, in Washington DC, and livestreamed.

Perhaps the best way to get to know Judy and her work is the magnificent documentary, Crip Camp, of which she is one of the stars. Crip Camp is on Netflix, and the full version is also available for free, to everyone, on Youtube. Its website has more about the film, and features a curriculum, virtual experience, and more.

Judy's own site shares her extensive work and many conversations she had on disability. Her autobiography, Being Heumann, is available in different formats, including a version for younger readers, Rolling Warrior. Her Tedx talk and appearance on the Daily Show are chances to hear it directly from her.

Another highlight are years of her in conversation on the Heumann Perspective, where you can see the care and attention she gave so many. It is available as a podcast or on her youtube channel. Last week I was remembering how she talked with Alice Sheppard about dance and the power of art in changing society.

See also tributes from DREDF, Human Rights Watch, and her obituary on the BBC and New York Times.

The next thing you need

One of the most important things that I take from her is understanding the power of people coming together. Change comes from community. In her autobiography, Judy wrote:

“When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with.”

In less than two days since her passing, an outpouring of grief at her passing has been expressed by her many friends in the US, and as far apart as Brazil, Finland, Tajikistan and Thailand. An activist from Uganda said that she had never met Judy, but it still felt like the loss of a family member.

Perhaps it was Judy, more than anyone, who made us family. Judy was a giant, and she lifted us up on her shoulders. That's how we see where we need to go.

With love,


Share some of what Judy and her work meant to you. Leave a comment, or find the Debrief on Linkedin or Twitter.


Thanks to Tan Kuan Aw for the beautiful portrait of Judy.

Disability Debrief is supported by Sightsavers and this edition has support from K Li.

Thanks to Áine Kelly-Costello for notes on an early draft, to Stefan Tromel for the image of Judy as a giant, and to Fight for Right for highlighting the quote about friends to fight back with.

Heartfelt thanks to those who have shared grief with me in these past days, including, among others, Áine, Anne, Cata, Catherine (who let me know Judy wasn't well), Davey, Jo, Kathy, Kuan Aw, Miguel, my parents, Reham, Rosangela, and Stefan.

And most of all,  thanks to Judy, for who she was, and for all that she gave us. Without you, my life would not have been what it is.