Incapacity Rights Activist Judy Heumann

Successful women talk about managing their careers and their lives.

Illustration: Lauren Tamaki

Judy Heumann is a leading advocate of the disability rights movement in the United States. Not only is she the former special advisor on international disability rights to the United States under the Obama administration, but she is also a star of Crip Camp: A Disability Revolution, a documentary about Heumann and her colleagues who ran Camp Jened in New Visited York – “a summer camp for the disabled run by hippies” – which premiered at Sundance in January with great success. In March, Heumann published her book Being Heumann: An Unrepentant Reminder of a Disability Rights Activist about her lifelong struggle to ensure equality, inclusion and respect for people with disabilities. This year marks the 30th anniversary of the Disabled Americans Act of 1990, a landmark law that Heumann was instrumental in passing. She lives in Washington, DC with her husband. Here’s how she does it.

On a typical morning:

We have to start with the fact that I had polio as a toddler and use a motorized wheelchair. I am quadriplegic. And so I use a personal assistant to help me get dressed and bathe and everything. In the morning they come out and get my wheelchair because my wheelchair has to be charged every night. They bring the wheelchair into the room and then help me set it up and pull me into the wheelchair. Then I go to the bathroom and wash, brush my hair, put on make-up.

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 still make our yogurt with that equal Culture. That is really cool. Very easy to do. We don’t put sugar in it. You can put honey if you want. I never do.

When working from home during COVID:

I really miss going to a meeting or conference, whatever it is. It’s time to meet new people, have a coffee, and have a chat. You really can’t do that now. And because I’m such a real networker, that cramps my style. I fully understand that some people – disabled people or family members – have more flexibility when they can work from home instead of going to the office. But I don’t hope all of our work becomes virtual.

My husband is retired. We try to have dinner together every night, whether we eat here or outside once or twice a week. I’m so busy during the day that dinner is really important because it’s an opportunity to connect. In some ways, one of the benefits of COVID is that I used to travel a lot and now basically don’t travel – so we have time together, which I really enjoy.

In response to Crip Camp:

Since the pandemic started, I’m only three or four blocks from my apartment, and I’m stopped several times a week by people who’ve seen the movie, read the book, whatever it is.

It’s very humble. What I want is for the book and film – and other books and films – to allow people to see, by and large, the real lack of media coverage of disability. Black disabled people, Latino disabled people, Asian disabled people, indigenous disabled people, disabled people with visible and invisible disabilities – they are quite absent. Yet in the United States it is more than 20 percent of our population. Disability is something that all families experience temporarily or permanently.

To represent people with disabilities in the media:

If all ads were white men tomorrow you would notice. Maybe after the fifth or tenth advertisement, you’d start saying, “What’s going on here?” But unless disability is part of the 100th advertisement, people don’t necessarily think about it. And here I am also talking about disabled people. We don’t have to accept our absence. It is very important that we – like other groups before us – report and say: “We have to be represented.”

Regarding the term “efficient”:

We did the Daily Show. I love Trevor Noah. I always loved him. When asked to be on his show, I said, “Oh, I’m so excited.” One of the interesting things about the interview, if you look back at it, was when he used the term “capable”. I don’t like the term “efficient”. Because for me the word “able” means that I am not able. I have a handycap. It’s a normal part of my life. I don’t like it when people play around with that word.

So he said “fit for work” and I said, “I’m not calling you disabled because the likelihood of temporary or permanent disability is high.” And he said, “Are you threatening me?” I’ve thought about it a lot. I think one of the problems with disabilities is that people are afraid of acquiring disabilities. I want people to think about it more. What is threatening when you call someone who is temporarily able to work? Can people see disability as a normal part of their life? Because as we know very well, life does not go along a flower path. Life has ups and downs, and how we deal with it individually and as a community are of vital importance.

On the importance of working with various activist groups:

I believe in the importance of working with other movements because I firmly believe that the obstacles we face are similar. The community of people with disabilities brings in a specialty for disabilities, other communities bring in their areas of expertise, and coming together and working together helps us to increase the visibility of the disability community. For me it is a real extension of the circle to grow and grow and ultimately allow people to see that there are so many precious voices, some of which are heard, some of which are not.

Look at the value of working together. In the disabled community that really meant a disability. I’ve had polio, but I don’t just stay with people who have polio, and I don’t just work with people with physical disabilities. It’s about learning more about the breadth of the fellowship and how we can work together and why we need to work together.

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