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, shes 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. Heres 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. Im a quadriplegic. And so I use a personal assistant to help me get dressed and bathe and everything. In the morning, theyll come out and get my wheelchair, because my wheelchair has to charge every night. Theyll bring the wheelchair in the room, and then theyll help set me up and pull me into the wheelchair. Then Ill 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 thesameculture. Thats 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. Theyre times to meet new people, to go off and have coffee, to go have a chitchat. You really cant do any of that now. And because Im such a real networker, thats 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 its eating here or one or two times a week weve been doing outdoor dining. Im so busy during the day, so dinner is really important because its an opportunity to connect. In some ways, one of the upsides of COVID is that I used to travel a lot, and now Im basically not traveling so it does give us time together, which Im really enjoying.
On the response to Crip Camp:
Since the pandemic started, Ive 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.
Its 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 theyre pretty absent. And yet, in the United States, its 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, youd begin to say, Whats going on here? But if disability is not a part of the 100th advertisement, people dont necessarily think about it. And here Im talking about disabled people also. We need to not accept our absence. Its very important that we like other groups before us have come forward and say, We need to be represented.
On the term able-bodied:
Wedid The Daily Show. I love Trevor Noah. Ive always loved him. And so when I got asked to be on his show, I was like, Oh, Im 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 dont like the term able-bodied. Because to me, the word able connotes that Im not able. I have a disability. Its a normal part of my life. I dont 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. Lifes 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, its 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 Im not just staying with only people who had polio, and Im not just working only with people who have physical disabilities. Its being able to learn more about the breadth of the community and how we can work together and why we need to work together.read more
How I Get It Done: Disability-Rights Activist Judy Heumann
