Judith Heumann has devoted her life to fighting for the rights of people with disabilities, herself included. She’s not only been at the forefront of great strides in the disability rights movement, she’s led the charge. Born in Brooklyn in 1947, she was paralyzed after contracting polio as a toddler. Denied the right to attend public school because she couldn’t walk, she watched her mother, a community activist, demand inclusion for her daughter, who was eventually allowed to attend a special school and a public high school. In college, Heumann organized students to stage protests, demanding ramps for access to classrooms. And, as a young professional, she faced exclusion once again: she was denied her teaching license because administrators feared she couldn’t evacuate herself and her students during a fire. She would go on to win a lawsuit against the New York City school system and became the first teacher in the state to use a wheelchair.
Heumann’s story is the story of many people with disabilities: lives limited due to discrimination. And it is what she’s crusaded against for decades. The fruits of her success are abundant: She helped usher in the groundbreaking Americans with Disabilities Act (ADA) and served in the Clinton administration as an Assistant Secretary in the Office of Special Education and Rehabilitative Services. She was the World Bank Group’s first Advisor on Disability and Development and later was appointed by President Barack Obama to be the Special Advisor on International Disability Rights for the State Department—the first person to hold such a position. She’s also been actively involved for years in the independent living disability rights movement in the US and around the world. Of late, she’s written a memoir, Being Heumann: An Unrepentent Memoir of a Disability Rights Activist, which was published this year.
ABILITY’s Chet Cooper and Diana Pastora Carson caught up with the Washington, DC-based activist and author during the making of the ABILITY Magazine Summit ADA30, a virtual celebration of the Americans with Disabilities Act (ADA). Heumann shared her thoughts on the ADA, the increasing diversity of the disability community, and the implications of COVID-19 on those who are disabled, among other topics.
Chet Cooper: I think we’ve known each other for more than 25 years? However, for those that do not know, you can give a little bit of “Hi, I’m Judy…”?
Judy Heumann: (laughs) Okay. My mother came over from Germany in ’35, my father in ’34, and they lost their parents and grandparents in the war and many other relatives. I was the first of three children, and I had polio in 1949. I’m 72 ½; I became 72½ on June 18th. Half-birthdays are kind of an important milestone in my life. I have no idea why. I’ve had a very rich and completely unplanned-for life. I love to say to younger people who are talking about mapping out their future, you want to have a future in mind, but don’t be too rigid, because you have no idea where life could take you. Try to be open as much as possible.
I’ve been very lucky over the course of my life. I’ve been very involved with the development of what we call the independent living disability rights movement in the US and internationally. I’ve worked with disability—and with all emerging leaders in the ’60s and ’70s. Many of us played very important roles in the development of the political movement in the US and also it was kind of a unique time, because we saw the development of centers for independent living, national disability rights organizations, international groups like the International Disability Alliance, major laws like Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), and many others.
So there’s been a lot of progress that’s been made over the course of my life, including the UN Convention on the Rights of Persons with Disabilities, which is now ratified by about 181 countries. The landscape is quite different from when I was growing up, when there was no movement, where there is an emerging movement, both domestically and internationally.
Diana Carson: In your mind, given your vast knowledge and experience, has the ADA made the difference that you and so many visionaries expected it to?
Heumann: I think the ADA is an amazing piece of legislation. It definitely has had a significant impact on changes in the US. That being said, the ADA, if it were the only law that we had in place, no. The law itself cannot do—it’s not what it was meant to do. It’s an anti-discrimination law that’s very broad, but I think we need to look at the ADA as a piece of legislation that is continuing to fill in what we need, and the other laws I mentioned earlier are very important, and there are other laws besides. The ones I’ve mentioned, like Sections 508, 501, 502 and 503, listeners may not know all those different provisions of law, but they’re very important because they do things like require the government and contractors to hire people who are disabled and to look at issues of technology and accessibility. Those are all important pieces of legislation.
And we need new and additional laws in areas like home- and community-based services, because that’s a huge issue. We need, in my view, more legislation in the area of housing. And we need stronger enforcement of many of the laws we already have. But given that this is the 30th anniversary of the ADA, I think it is a milestone piece of legislation. The effort that was taken nationally to bring about the Americans with Disabilities Act is historic in and of itself. What I believe is very important that we’ve been seeing is the newer generation. As younger people are growing up and recognizing what they’ve been benefiting from, both from the ADA and other laws, they also very much recognize that it’s not enough. The ADA generation of younger people, I think, very much sees that they are benefiting from the ADA, but that there is much more to do and that they’re taking on strong leadership roles.
For me, when you look at the composite of these different laws, we’re seeing some very important changes. While we still don’t have the same rates of graduation from high school and entrance to and graduation from college as other populations in the US, we still have been seeing increasing numbers of people graduating high school, attending colleges and universities, and graduating. I can see, as I meet more and more younger people who are working at Google and Microsoft and the Center of American Progress and many other organizations, both public and private, where the influence of people who are disabled is really slowly emerging.
So we have results that are very important, and we also can see now the progress that we’ve made and what more we need to do. Now clearly, what more we need to do is somewhat based on legislation, but when we’re looking at remedies, and when I’m talking about remedies now, I believe that when we look at the unemployment rate of people who are disabled, it’s much higher than for non-disabled people. I think one of the reasons is people’s skepticism, employers’ skepticism about whether or not a person who is disabled in fact could be a good employee. So in a group like Disability In and national organizations on disability and others that have been working for years with getting employers on board, I would say that Section 503, which is part of the Rehabilitation Act of 1973, is a very important tool; it basically says if your company is a contractor with the federal government—and there are many companies that are contractors with a federal government—that there’s an aspirational goal of hiring seven percent of your workforce that are people who are disabled. That, I think, is also one of the reasons why we’re seeing more businesses want to look at what they’re doing, what they need to learn, and how they need to implement changes.
There are many different components in play here that are resulting in progress slowly being made, but still, with huge gaps.
Carson: What can people who find themselves in a position where they don’t know all the acronyms, they don’t know all the laws, necessarily, but who are seeking knowledge. What would you say is the next step for people who are just wanting to take the ADA’s intent further and create inclusive communities and work areas?
Heumann: We talk about 61 million people who are disabled in the US. They’re obviously not all of working age, but I think many people who have disabilities do not necessarily identify as having a disability. For me, that’s one of the big objectives that we need to be working toward, and that is helping people to identify and understand the scope of disability that the ADA and other laws cover. It’s important that we, as individuals, look at why we may feel ashamed of our disability, whether or not we express it that way. I think it’s a combination of shame and fear that we may not be talking about if we have diabetes or epilepsy or cancer or anxiety or depression or bipolar or whatever. If we’re able, as a movement, to reach out to those millions of people who don’t know that they may have a disability or may know that they have a disability but don’t have a community they can be apart of, or they’re not aware of it, I think expanding our circle is one of the big issues that we need to be dealing with over the next five to ten years. And that circle, with this expansion, will also be representative of race, religion, sexual orientation, and disability, so that we can show in our actions the richness of our community.
Part of the issue of the richness of our community is, like many other communities, we have not been together. People with intellectual disabilities are not necessarily involved with people who are blind or deaf or have a physical disability. One of the beauties of the movement over the last 30 to 50 years is also that it is becoming a more diverse community, and that diversity is not just race and religion and sexual orientation, it’s also significantly by kind of disability. As some people have discussed, there is, in many ways, a hidden pecking order. The more you look and sound like a non-disabled person, the more you may be able to advance. That’s another issue where we need to be, one for all and all for one, and be able to understand and support each other.
When I think about the future, people ask me, “What do you think will be in the next 30 years?” I can’t address 30 years beyond what I’m willing to think about at this point, but I do think we can look at the next three to five to ten years, where we have to be learning about who we are. We need to have an understanding, for example, of the fact that may exist in various communities based on race and socio-economic status, how there are people within the US who are not benefiting from laws because they don’t have the resources to hire an attorney or an advocate. The government, in my view, is not always enforcing laws as they should be. When I worked in the Clinton administration as an Assistant Secretary in the Office of Special Education and Rehabilitative Services, it was one of my objectives to have the federal government exercise its capacity to provide technical assistance with states and to work with them in a reasonable way. But also to make them and families aware that the State Department of Education, for example, has a responsibility to ensure that kids who are disabled benefit from the Individuals with Disabilities Act (IDEA) and other pieces of legislation.
As our movement is growing, we also need to become more knowledgeable. Not everybody is interested in policy, but it is important that people know where disability rights organizations are so if they want to join groups like the American Association of People with Disabilities, the National Association of the Deaf, the National Federation of the Blind, they can. I want to see our community grow. I want our community, in this expansion, to also become more demanding. By that, I also mean our coverage in the media, the representation of disability, is nowhere near where it needs to be. That’s one of the big problems we also still face: we’re not represented in advertising, in television, in documentaries and in film and on and on.
We’re still needing to be throwing the cards up in the air, and as they tumble quickly, organizing them into appropriate sets and continuing to move forward.
Cooper: Is there anything else you would like to share?
Heumann: Let’s see! Right now, in this COVID period, we need to be networking as much as possible. We need to be really recognizing that COVID is not only having an impact on the health of some individuals who are disabled, but the economic impact is going to be quite significant. Attempts that are still being made to do things like repeal the ACA, I believe that people in the US are gradually understanding that everyone should be getting healthcare, that people who are not insured are at great risk, and it has an adverse effect on our economy as well. When we look at fighting for healthcare as an example, this is not just an issue for people who are disabled. This is an issue for all people in this country. And identifying ways that we, as a disability community, can continue to work with on the Leadership Conference on Civil [and Human] Rights and their members, women’s organizations, LGBTQ organizations, religious groups, interfaith groups. These are very important audiences.
We’ll have to be very involved with trying to help insure that cuts to local, state and federal budgets don’t put us back years. We must be activists and we must look to many different organizations, including those in our communities, to volunteer with those groups, learn from those groups, and be a part of activism in our community.
Cooper: Isn’t there a movie and book?
Heumann: (laughs) Yes, if you haven’t seen the movie Crip Camp, which is out on Netflix, I encourage you to look at it. I also have a book that came out in February called Being Heumann. Also Crip Camp 2020 has been running Sunday sessions on different disability topics.
Cooper: How active are you in getting out the vote?
Heumann: I’m on the board of AAPD (American Association of People with Disabilities). I’m supporting activities that organizations are doing to actively get out the vote. Getting out the vote is very, very important. I’m also working on the Biden campaign. It’s not just getting out the vote, it’s also working on issues around suppression of the vote and helping to ensure that people who will be doing absentee balloting will be knowledgeable about how to get ballots and how to vote and submit their ballots. It obviously is critically important, especially given the complexity of this election, because of COVID and how states are revving up so much to be able to ensure that people will be able to register and will be able to vote.
Cooper: Are you working with any other outside groups, such as Bloomberg or Tom Steyer?
Heumann: At the moment, no.
Yesterday I had the privilege of having a dialogue with President Obama, who said that one thing that we all have in common is ‘being human.’ I thanked him, because that’s the name of my book, Being Heumann, although my name is not spelled h-u-m-a-n, but nonetheless, I think at the end of the day what he said is very true, and that is one thing that we have in common, regardless of where we live in this world, but we are all human. At the end of the day, anyone who is disabled can join our family at any point in time. We don’t want people fearful of that. We want people feeling that they, as people who are non-disabled or disabled, have a very important role to play in helping to ensure that our communities are welcoming and barriers are removed to allow us all to make our contributions. I really want to say that it’s an honor for me to be a part of this movement, and it’s an honor for me to share with hundreds and hundreds of other disabled people activism and the belief that we can make a difference—and we are.
We need to continue to work on expanding our movement, not just getting those of us with disabilities who identify as disabled people becoming more active, but we talk about 61 million people who are in the US, and at least one billion people who are disabled around the world. Our numbers, as far as disability and activity, are not as strong as what our real numbers are. We need to be talking with people to allow them to understand what disabilities are in the US, like anxiety and depression and bipolar and various learning disabilities. We have hundreds of different types of disabilities—cancer and diabetes and epilepsy—but if you don’t understand that you may have a disability that will potentially result in discrimination, and you don’t know your rights under the law or you do know, but you’re ashamed or afraid of disclosing your disabilities for fear of not being able to be a part of your community or a fear of what could happen on the job, that’s one of the important parts of our movement—growing and bringing the diversity that we represent by disability category, by race, by gender or sexual orientation, religion, etc.
We are the largest, most diverse community in the US and around the world. We need to relish that, and we need to be able to ensure that the country and the world understand the breadth of who we are and why we’re important to the betterment of all mankind.
Cooper: All heumannkind.
Heumann: To the betterment of humankind. Thanks so much for inviting me to do this interview!
Judy Heumann book”Being Heumann”
In partnership with Diana Pastora Carson, M.Ed.
Author: Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools & Communities, and children’s book Ed Roberts: Champion of Disability Rights, ADA 30th Anniversary Edition https://www.dianapastoracarson.com/store
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