Judy Heumann is an internationally renowned and lifelong disability rights activist. Her tireless efforts on behalf of the disability community have led to positions in the Departments of Education and State within the Clinton and Obama administrations, respectively. She has also served as the first Advisor on Disability and Development for the World Bank Group, and she was a Senior Fellow at the Ford Foundation. Her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, details everything from her contraction of polio as a baby to the invaluable role her activism played in ensuring the landmark passage of the Americans with Disabilities Act. She is also featured in the new Netflix documentary, Crip Camp, which follows the lives of disabled campers at Camp Jened—many of whom went on to shape the disability rights movement in the United States.
Sam Kolitch: You essentially bookend your memoir with the line: “I never wished I didn’t have a disability.” What does that line mean to you and why is it so important?
Judy Heumann: Since disability is a normal part of life, it’s not only a part of who I am but it’s really enabled me to become who I am. My opportunities to meet other people, to learn to communicate with other people, to identify the personal experiences that we have, and to be able to speak up about change that needs to happen is all something I’ve grown up learning to do.
SK: You write about the lack of representation that disabled individuals receive in Hollywood, the media, and elsewhere. How does that affect your work as a disability rights activist?
JH: You know, it’s very interesting. As things begin to change, you feel some degree of acknowledgement. But the reality is that the change is so marginal. When I watch television, while I am seeing a little more representation happening, it’s still so empty. There are a few television programs in which disabled people are starring in, like Speechless, and there are some disabled characters in films, which I think is good. It’s just still so limited and I think it is important for disabled children, as well as for disabled adults and seniors, to see ourselves in a positive light more frequently.
This is what I think is the problem: we are not seeing ourselves. We are not seeing people with different types of disabilities, different racial backgrounds, and so on and so forth. We are not seeing disabled people nor the reflection of the diversity within the disability community anywhere. I look at the issue of advertising, for example. I’m 72 years old. The racial diversity in advertising today, and sexual-orientation diversity, is so much better than when I was growing up, which is all very positive. But you don’t see disabled Asians, African-Americans, Latinos, white people, gay people, or whichever other identity reflected in that. If disabled people were regularly reflected in advertising, for instance, there would be some positive image we would be drawn to.
SK: A focal point of Crip Camp is Camp Jened and the inclusive space it provided for disabled campers. How did Camp Jened play a seminal role in your life?
JH: For me, Camp Jened was an opportunity to have fun—an opportunity to begin to experience life in a different way. For me, as someone who needed personal assistance, I basically depended on my parents to help me get dressed and go to the bathroom before I went to camp. Camp Jened allowed me to be self-directing. There was something really good about being able to recognize that I could express how I wanted something to be done and that there was a certain liberty that I had.
I would say that Camp Jened, in addition to being an environment where campers felt by and large comfortable with each other, was an opportunity for campers to maintain friendships. Camp really helped nurture our views of ourselves and we valued people who had various forms of disabilities—it was this that enabled us to look at the “whole person.” This gets back to the issue of “never thought of not having a disability.” Camp allowed us to look at a problem and not say “I’m never going to be able to do this because I can’t.” We began to think like Obama: “I can.”
SK: There’s a harrowing part of the documentary where the conditions at Willowbrook State School are shown. How much did the institutionalization of disabled individuals motivate your advocacy work?
JH: When I got to Willowbrook, they were not going to let me on the premises because I was in a wheelchair. They made me sign a paper that said if anything happened, they would not be responsible. They did not make the nun or the reporter I was with sign that, so we could see the inherent biases. Going to Willowbrook also allowed us all to think about how we were so close to being there. For me, it was eye-opening. It allowed people to see these terrible atrocities and conditions. When people looked at what was going on in Willowbrook, it was shocking. I really presumed many people thought, “What would I do if I had a child like that?”
What we still don’t see enough of is people who have intellectual disabilities and multiple disabilities who are living in a community and being a part of life. Most of the people at Willowbrook would not be there if they had ongoing support services, if they were in school, and if they had various other opportunities. We wanted others to be able to see what life should look like and can look like and does look like for people. But when you look at the scene of people being fed and the lack of staff at Willowbrook, you could just see the negativity—positive images are very limited.
SK: You write about the violence that disabled people, particularly disabled women, disproportionately face. Why do you think that this does not get enough attention?
JH: I think it’s a great point. Again, the absence of stories means that people will continue their biased thinking—which is probably not thinking about it at all. When you think about violence against women, you don’t think about violence against disabled people. Maybe “because they’re protected by God?” or “nobody would do something like that to somebody who couldn’t…?”, whatever. Even organizations that are dealing with this issue don’t necessarily think about disabled women nor do they think about women who have experienced violence and then acquired a disability.
The sum of it is that when we look at disability as a part of any issue, it requires that we talk to people. So in the case of violence against women, or men, people should be asking, “what do we know and how are we reaching out to and serving people who have a disability? What are we doing to be a support?”
SK: My last question is about hope—
JH: Hope, to me, is a little wishy-washy (laughs). I can hope for something to happen but it needs to be proactive. In the end, I feel like hope results in something changing only when change agents make things happen. When I see a problem, I won’t necessarily be the one who fully understands the problem or the solution, but I hope to be able to give input and raise the issue in order to work toward change. “I hope that the buses are going to become accessible” is not going to cut it because hope is not going to make them accessible. Only our work will be able to do something about it.
*This interview has been edited for length and clarity.