how i get it done

How I Get It Done: Disability-Rights Activist Judy Heumann

Illustration: Lauren Tamaki

Judy Heumann is one of the leading advocates of the disability-rights movement in the U.S. In addition to being the former special adviser on International Disability Rights for the U.S. under the Obama administration, she’s also one of the stars of Crip Camp: A Disability Revolution, a documentary film about Heumann and her peers who, in the 1970s, attended Camp Jened in New York — “a summer camp for the handicapped run by hippies” — which premiered at Sundance in January to critical acclaim. In March, Heumann released her book Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, about her lifelong fight to secure equality, inclusion, and respect for people with disabilities. This year marks the 30th anniversary of the Americans with Disabilities Act of 1990, a landmark piece of legislation that Heumann was instrumental in helping to pass. She lives in Washington, D.C., with her husband. Here’s how she gets it done.

On a typical morning:

What we have to start off with is that I had polio when I was a toddler, and I use a motorized wheelchair. I’m a quadriplegic. And so I use a personal assistant to help me get dressed and bathe and everything. In the morning, they’ll come out and get my wheelchair, because my wheelchair has to charge every night. They’ll bring the wheelchair in the room, and then they’ll help set me up and pull me into the wheelchair. Then I’ll go into the bathroom and I wash up, I brush my hair, I put on my makeup.

For breakfast, we make our own yogurt. My mother-in-law just passed away, but in 1994 she brought us culture from Mexico and we literally are still making our yogurt with the same culture. That’s really cool. Very easy to make. We put no sugar in it. You can put honey if you want. I never do.

On working from home during COVID:

I really do miss when you go to a meeting, or a conference, whatever it may be. They’re times to meet new people, to go off and have coffee, to go have a chitchat. You really can’t do any of that now. And because I’m such a real networker, that’s cramping my style. For some people — disabled individuals, or people that have families — being able to have more flexibility on being able to work out of your home versus going to the office, I completely understand. But I am not hoping that all of our work goes virtual.

My husband is retired. We try to have dinner together every night, whether it’s eating here or one or two times a week we’ve been doing outdoor dining. I’m so busy during the day, so dinner is really important because it’s an opportunity to connect. In some ways, one of the upsides of COVID is that I used to travel a lot, and now I’m basically not traveling — so it does give us time together, which I’m really enjoying.

On the response to Crip Camp:

Since the pandemic started, I’ve only been going in like a three- or four-block radius from my apartment, and I get stopped a number of times a week by people that have seen the film, read the book, whatever it may be.

It’s very humbling. What I want is for the book and the film — and other books and films — to allow people to recognize the real absence of representation of disability in media, broadly speaking. Black disabled people, Latino disabled people, Asian disabled people, indigenous disabled people, disabled people with visible and invisible disabilities — they’re pretty absent. And yet, in the United States, it’s more than 20 percent of our population. Disability is something that all families experience, temporarily or permanently.

On disability representation in media:

If tomorrow all the advertisements were white men, you would notice that. Maybe after the fifth or tenth advertisement, you’d begin to say, “What’s going on here?” But if disability is not a part of the 100th advertisement, people don’t necessarily think about it. And here I’m talking about disabled people also. We need to not accept our absence. It’s very important that we — like other groups before us have — come forward and say, “We need to be represented.”

On the term “able-bodied”:

We did The Daily Show. I love Trevor Noah. I’ve always loved him. And so when I got asked to be on his show, I was like, “Oh, I’m so excited.” One of the interesting things about the interview, if you go back and look at it, was when he used the term “able-bodied.” I don’t like the term “able-bodied.” Because to me, the word “able” connotes that I’m not able. I have a disability. It’s a normal part of my life. I don’t like people playing around with that word.

So he said “able-bodied,” and I said, “I call you non-disabled because the likelihood of your acquiring a disability, temporarily or permanently, is high.” And he said, “Are you threatening me?” I thought about that a lot. I think one of the issues around disability is that people are afraid of acquiring disabilities. I want people to think more about it. What about calling someone temporarily able-bodied is threatening? Can people see disability as a normal part of life? Because, as we very well know, life is not going down a path of flowers. Life’s got ups and downs, and the issues of how we deal with it individually and as a community are critically important.

On the importance of working together with different activist groups:

I believe in the importance of working with other movements, because I firmly believe that the barriers that we face are similar. The disability community brings in an area of expertise in disability, other communities bring in their areas of expertise, and coming together and working together helps us increase the visibility of the disability community. To me, it’s really expanding the circle to grow and grow, and ultimately allowing people to see that there are so many valuable voices out there, some of which are being heard, some of which are not being heard.

Look at the value of working together. In the disability community that has meant really cross-disability. I had polio, but I’m not just staying with only people who had polio, and I’m not just working only with people who have physical disabilities. It’s being able to learn more about the breadth of the community and how we can work together and why we need to work together.

How I Get It Done: Disability-Rights Activist Judy Heumann