Remembering Judy Heumann
On the passing of an icon
Over the weekend, the world lost a hero, and the disability community lost its matriarch.
It’s impossible to list everything Judy Heumann did for the disability rights movement, so let me give you the highlights.
She sued New York for the right to work as the city’s first wheelchair-using teacher, and won. She organised the infamous San Francisco 504 sit in to force Nixon’s government to outlaw discrimination by federal agencies, and then was a driving force behind the US’s first nationwide disability rights law, the ADA. Later, she worked in the Clinton administration, improving access to education for disabled kids, and then for Obama, leading efforts to secure more disability rights laws around the world. And she was still on her mission; before she died, she was working with a multitude of international organisations to make sure disabled voices were heard. She was, truly, a badass.
For all her official achievements, though, Judy was beloved for two things: her devotion to her community, and her knack for being supremely quotable.
Let me share with you some of her most famous Judy-isms:
“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings…It is not a tragedy to me that I'm living in a wheelchair”
“Our anger was a fury sparked by profound injustices, wrongs that deserved ire. And with that rage, we ripped a hole in the status quo”
“If you don’t demand what you believe in for yourself, you’re not going to get it”
“Some people say that what I did changed the world… but really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it”
“I wanna see feisty disabled people change the world”
Judy was known to all of us as “the mother of the disability rights movement”. That was, in part, because she was the pioneer, a leader in the first generation to go over the top. But she also earned that moniker because, as my friend Peter says in his own moving tribute to Judy, she took a disparate community - often separated by inaccessibility, ableism and medical issues - and made us a family.
She first did that work at Camp Jened, a summer camp for disabled teenagers that ran in the 60s and 70s. Hers was the first generation to recognise the political power of community, of coming together, and it was at Camp Jened that the modern day disability rights movement was born. If you want to join us in paying tribute to Judy, I can’t recommend enough the Netflix documentary Crip Camp, in which you can watch her transform from an average teenager into an icon in the space of one glorious summer (it’s also on YouTube). As she later said, in what must be my very favourite Judy quote:
“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.”
Judy ensured that when the next generations of disabled people found their group of friends, we had an example to follow, a light up ahead showing the way to fighting back. That is an immeasurable thing, for which I will always be eternally grateful.
The truth is, I never knew Judy personally. I didn’t need to. I loved her from afar, and I will feel her loss for a very long time. The movement she created is the one in which I found my home, and it will be forever poorer without her. But ever stronger, too, because she was here to start us off.
At least now, when things are tricky, we know exactly what to ask ourselves:
What would Judy do?
What a legacy to leave.
Rest in power, Judy. Thank you for everything. We’ll take it from here.
With love to everyone whose life she changed,
What a beautiful tribute to a legend of the movement.