Take Note: Judy Heumann On Fighting For The Rights Of People With Disabilities

Feb 26, 2021

Judy Heumann, Disability Rights Activist

Judith "Judy" Heumann is an activist, author, wife, and public speaker who has spent her lifetime fighting for the rights of people with disabilities. Her advocacy began at an early age, inspired in part by the ways that her mother fought to ensure that she had access to education and opportunities as a child. Judy’s career has included founding and leading disability rights organizations and serving in positions nationally and internationally, including as the Special Advisor for International Disability Rights at the US State Department and as the Adviser on Disability and Development for the World Bank. She is featured in the 2020 documentary "Crip Camp" and is the author of "Being Huemann: An Unrepentant Memoir of a Disability Rights Activist." Judy will be speaking as part of a virtual Penn State event on March third at 3:30pm reflecting on the 30th anniversary of the Americans with Disabilities Act.

TRANSCRIPT:

Cheraine Stanford:

Welcome to Take Note on WPSU. I'm Cheraine Stanford. Judy Heumann is an activist, author, wife, and public speaker who spent her lifetime fighting for the rights of people with disabilities. Her advocacy began at an early age, inspired in part by the ways that her mother fought to ensure that she had access to education and opportunities as a child. Judy's career has included founding and leading disability rights organizations and serving in positions nationally and internationally, including as the Special Advisor for International Disability Rights at the U.S. State Department, and as the Advisor on Disability and Development for the World Bank. She's featured in the 2020 documentary Crip Camp and is the author of Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Judy will be speaking as part of a virtual Penn State event on March 3rd at 3:30, reflecting on the 30th anniversary of the Americans with Disabilities Act. Judy, thank you so much for joining us today.

Judy Heumann:

You're very welcome. Thank you for having me.

Cheraine Stanford:

I actually want to start our conversation where you started your book, "Being Heumann," which starts with the line, "I never wished I didn't have a disability." And I was wondering why that felt like an important first statement to make.

Judy Heumann:

Because I believe that many people feel that those of us who have disabilities, wish we didn't have them. And so I feel like people operating under the premise, that one would prefer to be something that you're not, especially in the area of disability where the medical discussion around disability has been so prevalent, and we've looked so much at cure and research, as opposed to injustice and discrimination, and not saying that health is not something we shouldn't be looking at, or that research is something we shouldn't be investing in, but those of us who have our disabilities today, need to lead our lives today, and I believe it's important that people recognize the contributions that we make. That disability is something that helps many of us be problem-solvers and creators and networkers, and therefore, I thought it was really important to say that.

Cheraine Stanford:

I love how you describe your mom, you described your mom as an optimist and a fighter, and I was wondering how you see those characteristics in yourself and in the work that you've had to do.

Judy Heumann:

It's very important to be optimistic, which doesn't mean naive. And optimistic, meaning that for me, change takes a long time, but I do believe that finding the right people and working with people and creating visions and bringing the voices of an ever larger group of people together to express in the area of disability, forms of discrimination based on disability, based on poverty and disability, based on race and disability. There's so many variables in the area of disability. When I look back over the course of my life, certainly are things the way I would like them to be today? No. But have we made progress? Absolutely.

Cheraine Stanford:

I've heard you quote this statistic and I've seen it myself that 61 million or one in four adults in the U.S. has a disability, which is a pretty high number. So I'm wondering why you think it's been and continues to have to be a fight, to get rights for people with disabilities?

Judy Heumann:

I believe that one of the reasons we're continuing to fight for rights is that many disabled people, A, don't realize they have a disability, and if they do, may feel stigmatized and unafraid to discuss them, and that we have to be able to recognize that together, talking about and creating the vision of where we want to go, is very important in supporting each other. I think in my book and in the film Crip Camp and others, you really get good examples of what people are doing to make changes in our communities. Many people feel that those of us with disabilities are not equal and that others are afraid of acquiring disabilities because of their fantasies of what disability may mean and how it could alter their lives, as opposed to, looking at the fact that many people will acquire temporary or permanent disabilities and looking at what role do we play individually at perpetuating discrimination.

COVID is a perfect example of, the disability community has for decades and decades spoken against institutionalized settings. Disabled people, regardless of age, should not be living in restricted living situations. And in many ways and reasons, people wind up living in these restrictive situations because we aren't building housing accessibly, we are not putting money into home and community-based services. We'll put money into nursing homes, congregate living programs, which at the end of the day, as I've said, we've spoken out against, and now with COVID, we see very high rates of people getting COVID-19 and people disproportionate number of disabled people dying. So the question is, what are we learning from this? What are we insisting, not just as disabled people, but as non-disabled people, what do we believe is the responsibility of the federal and state governments to provide funding for home and community-based services so that the option of nursing homes really leaves us, and we're looking much more at having the financial support for people to be able to remain in their homes in their communities.

I very much fear the fact that while we're learning about this a little bit, we're quickly going to move away from thinking about it and move on to something else, which in the end, adversely affects the average person who is someday, either their mother, their father, their kids, themselves will need temporary or more permanent support that they won't be able to get as they need it. So we need the work that we're doing to be seen as something that doesn't just benefit us as individual disabled people, but can really benefit our society overall.

Cheraine Stanford:

You know, in 2020, the ADA, the Americans with Disabilities Act celebrated the 30th anniversary. What more still needs to be done and what kind of discrimination you think people are still facing?

Judy Heumann:

I mean, I think like the Civil Rights Act of 64 asked the same question. It's great that it passed, discrimination still significantly exists. In the area of the Americans with disabilities act and other laws, I would say there are a number of things. One, many disabled people don't really know what the ADA is. So many people have invisible disabilities and have not been with other disabled people. They may not know that they are covered. They don't know the definition of disability. They don't know what discrimination is defined as, and then they don't know how to file a complaint. So I think the ADA has been very, very valuable. I think significantly we've seen changes in the area of infrastructure, new buildings, buses, trains, being accessible. We're seeing more of an effect in the area of technology and issues around accessibility of technology. Certainly in the area of employment, title one of the ADA, but you look at the fact that even pre-COVID, the unemployment rate for disabled people is significantly higher than for non-disabled people.

So employment being such a critical part of our society, you work, you earn money, you can raise a family, support yourself, support others, contribute and the status of what it means to be employed, and when you're not employed, how people view you. So I would say the ADA is only 31 years old now, the depth of discrimination against disabled people that many people who discriminate, would not own, and I think discrimination across the board, whether it's in race or disability or gender or sexual orientation or religion, whatever it may be, we need as a society and ultimately as individual people, to really take more responsibility for what we don't know and learning and talking and working with other people on what we need to do in order to change our own lives, to support other people's lives being changed.

Cheraine Stanford:

I feel like I just kept seeing and feeling parallels to the civil rights struggles around race in particular, and even some of the language of just wanting to be seen as whole and human and the need for representation. I'm wondering if you've noticed those similarities and parallels as well?

Judy Heumann:

Yes. Say a little more.

Cheraine Stanford:

And the book, when you were talking about that some of the entrances, this is the one that struck out for me, I'm going to speak personally at this point, but some of the accessible entrances or things are at the back of a building, and I was thinking about how many people had to enter from the back of a building because of their race, so they're just parallels in terms of the kinds of discussions [crosstalk 00:11:20]

Judy Heumann:

Parallels that are not necessarily seen as parallel. So I'll give you an example. I was working someplace where we were having an event every month in a major building, and there was no front entrance that was accessible. And I had to go through the kitchen and I suggested that we look at moving the site, saying it would not be acceptable if black employees had to go through the back entrance and it was completely poo-pooed. So I feel that we need to be having greater dialogue about the types of discrimination people are facing, and exactly as you were saying, having to come through a back door, if it's an old building and it's the only way to get in, there are different ways of handling it.

When I was working in the state department, I was in a country and the home of the ambassador had an accessible entrance in the back, and for 4th of July celebrations, everybody came through the front door, except those people who used wheelchairs or couldn't walk up the steps. So the ambassador changed it so that everybody went through the back door and I thought, it didn't cost them any more money, most people probably didn't even recognize what happened and why, but every disabled person that had to go through the back door previously, they understood why.

And so there are things like that that I think are very important and setting up dialogues where people can look at some of the similar experiences that people face and recognizing the hurt that people experience, the degradation of having to accept that going through the kitchen is what you have to do, if you want to get to the same place. And I think your question is a great question, and isn't asked frequently. Like bathrooms, honestly, because frequently, depending on the building, they'll be multiple men's, women's, unisex bathrooms, but they'll only be one or two accessible bathrooms. There'll be no sign. You'll go in. It's not accessible. You have to find somebody to find out where is the accessible bathroom. They may or may not know. They have to call the front desk, where is the accessible bathroom?

Sometimes it's assigning exactly where to go, but that whole act of doing something which is typically private for people become this big public ordeal. I don't want to call having to find a bathroom or going through a back entrance a little, but to the average person, it's like, "What's the big deal? You can get in the building. Why does it matter you have to get in through the back of the building?" And now people just don't get it. And there are people like you, who get it, and other people are like, get over it, we have bigger things to deal with. And of course, at the end of the day, I went through the kitchen because I needed to get to where I had to go, but it really did pain me that in the discussion that I had had, it wasn't so much as, "Oh, we really get it, and we're really sorry, and we will look at what else we can do."

Cheraine Stanford:

I think there's something also, it makes people uncomfortable to have these kinds of conversations because they know they don't know a whole lot and they don't want to say the wrong thing.

Judy Heumann:

I think it's very important. It's not just a disability issue. We're going through so many changes in society that we need to have discussions that are difficult, where people aren't always saying the right thing.

Cheraine Stanford:

If you're just joining us, this is Take Note on WPSU. I'm Cheraine Stanford. Our guest is disability rights activist, Judy Heumann. Judy, one of the ways you describe yourself is as a mentor, why is that an important part of your identity?

Judy Heumann:

I think many of us in my generation did not really have disabled mentors, and so I think they're really important and I encourage people to be willing to spend time with other people, to help them move forward. And for me, it's also a way that I learn because it's very valuable to see and sad in some ways that the same problems generationally, continue to go forward, feeling invisible, feeling that you have to be cautious about what you say and how to stay it. A very common question is, "I'm going for a job interview. Should I disclose my accommodation needs?" And you don't have to, it's not legally required. The employer's not allowed to ask you, but it does tell you something when you go for an interview, if the employer says accommodations are something that are willingly given in the company, if you have any needs, we're happy to talk to you about it whenever, as opposed to no one mentioning anything and you're trying to figure out how do I raise the discussion?

So that's like just one example and the accommodations maybe, relatively simple. And most accommodations are, I think, you know, since 1970, I believe when Sears and Roebuck came out with a study on accommodations, which at that point was the average [inaudible 00:17:28] was a hundred dollars. So for inflation, it goes up, but what is an accommodation yesterday, may no longer be an accommodation today. So when we look at computers and we look at how texts can be enlarged, and when we look at technology where you can do dictation, those things now are becoming much more commonplace for everybody. The design of it was done for blind people or people with other kinds of disabilities, but the benefit is really to society overall. So I think we need to be much more open and not narrowly looking at the term accommodation, recognizing it is something that may legally be required, but there are many things that we can be doing as things are being designed, as buildings are being built. The designers need to see accessibility universal design, as something which is beneficial.

Cheraine Stanford:

I'm wondering if there've been downsides to being such a public figure?

Judy Heumann:

I'm probably not as known as you think I am. I think on some level, it's seeing and it's being an example and allowing other people to see that there's not so much unique about me and other people can do the same thing. It's really a matter of speaking up and speaking out, and in my case, valuing myself, but valuing my community. And really it's always been for me doing things with other people. I'm a big extrovert, as you probably could tell, and so I definitely like the ability to work with people to make bigger change.

Cheraine Stanford:

I want to talk about Crip Camp. It tells a story of the disability rights activists who emerged from a camp called Camp Jened, a camp in New York for people with disabilities. Can you talk a little bit about what made the camp special?

Judy Heumann:

I think that camp was special because, well, did you ever go to camp?

Cheraine Stanford:

Not really, not like sleep away camp.

Judy Heumann:

So camp for me was special, like I think many camps are for disabled or non-disabled people. It's an opportunity to be growing up. It's an opportunity to be away from wherever you're living. It's an opportunity to explore who you are and camp Jened and other camps for disabled people really allowed us to be ourselves in a way that we couldn't be, in many other situations because all the campers had disabilities, some of the counselors that disabilities, but we were learning from each other. We were learning that we were experiencing various things, including discrimination, that we had visions and dreams of what we wanted to do, that we didn't know whether or not we could do them, and the importance of being able to be with other people who were older and younger, so that we could be examples and there, I think it's a great issue around being a role model and a mentor.

It happens naturally in many ways. And I went to camp for many years, as did many of the kids at camp Jened and other camps. And really it was a time of coming together to validate who we were, and as teenagers, as adults, we're always evolving. And so I think to be able to look at people whose experiences have been positive and negative and be supportive, I think all that's important. So I think the well-rounded camps like Jened really helped us be able to become who we would become, in a way that probably would not have happened if we were only one or two disabled people in a camp. I believe that inclusion and integration is very important so I'm certainly not at all speaking about segregated programs as being the objective, but I do think it's very important for people to have times to be able to come together and really let it all hang out and be able to laugh and cry and dream and fantasize and experiment and know who your [inaudible 00:22:08] person is for the week or the month or the year or your life.

Cheraine Stanford:

You actually made me realize, I did go to camp. I went to journalism camp, which in hindsight is pretty hilarious because of the conversation we're having right now.

Judy Heumann:

Was it beneficial for you?

Cheraine Stanford:

I think so. [crosstalk 00:22:28] Yeah. Yeah. And there was something about being away, it wasn't in a camp setting, it was like at a university.

Judy Heumann:

Yeah, but it was a time to be with people that had similar interests, yeah.

Cheraine Stanford:

Yeah. There's a line that you have in the book that says, "I recognize now that exclusion, especially at the level and frequency at which I experienced it, is traumatic." I'm wondering if, in the moments you felt that trauma, or if it's sort of just looking back, you realized that there were thing after thing.

Judy Heumann:

I don't think it's just looking back. I think it's still today. I mean, discrimination, whatever label we give it. If it no longer exists, which isn't where we're at, then you don't experience it. You can reflect on what you experienced. But I look at the past, I look at the present and I can say, "Well, there are more accessible bathrooms today than there were when I was younger so that's one less embarrassing experience where I feel shame, humiliation, whatever it may be." But then I look at the other situations which still go on, people being denied jobs, people being denied an income sufficient to be able to support people's needs, people being forced into segregated living programs, because you can get more services in a segregated place than you can in your own home, not being able to have technology which is accessible because you're blind, living in a place where you don't have internet connectivity, whatever it may be, those are all experiences that can be fearful, really limit your ability to move forward and ultimately over and over again, it can take positivity away from you.

And I think it's really important that we are in a situation always, where we can believe that things can change that individually and collectively we can make a difference, even though it can be really hard to believe that.

Cheraine Stanford:

[inaudible 00:24:32] been in protests where you blocked streets and staged sit-ins, what was that experience like and were you ever scared in those moments?

Judy Heumann:

Yeah. I mean, I would say that demonstrations, regardless of the type can be scary, but for me the demonstrations I've been involved with, again, this theme of being with other people and recognizing that we're doing what we're doing, because we believe it's the necessary and right thing to do, and being there to try to protect each other. I think those are all things that are very important and being able to be public, I think is also important. So certainly in many of the demonstrations that I've been involved with and there've been people who've been involved in many more than I have, one of the reasons that they're so important is being able to express from yourself and within that group, what it is you're trying to change, to allow people to understand the discrimination that people are experiencing, the pain and violence that people are experiencing.

Cheraine Stanford:

What's something that you maybe don't hear discussed often enough, that you want to leave our audience with?

Judy Heumann:

I feel like we need to be talking more about race, gender, religion, diversity in disabilities, hidden disabilities, visible disabilities. We need to be talking much more about how we put disability lenses on discussions that are going on in all these communities, how we begin to have discussions about how we feel as people from multiple backgrounds. I speak about being a disabled Jewish woman and the importance of my, over the last number of decades, with other disabled friends and allies who are Jewish really trying to begin to have difficult discussions that go beyond the issue of accessibility. I mean, I think accessibility is obviously critically important, but what people want is to belong and to feel like you belong. And so we really to look at what are the barriers to enabling people to feel like we belong, and that means we have to really be talking to people individually, people who are like us and people who are not liking us, not like us and maybe not liking us also, but, and really looking much more deeply at what we have to be doing to make these meaningful changes.

Like disability studies is very important, but other minorities studies need to include disability studies. So black studies, Latinx studies, indigenous studies, on and on, need to include disability studies within their curricula, as well as disability studies, so that we really can be learning much more about how a disability impacts many different groups, because if we don't understand how it's happening, why it's happening, what needs to happen to change it, it's not going to happen miraculously.

Cheraine Stanford:

I've been talking with Judy Heumann, activist, author, wife, and public speaker, who has spent her life fighting for the rights of people with disabilities. Judy's career has included founding and leading disability rights organizations and serving in positions nationally and internationally. She'll be speaking as part of a virtual Penn State event on March 3rd at 3:30 PM, reflecting on the 30th anniversary of the Americans with Disabilities Act. Hear more take note interviews on our website at wpsu.org/takenote. I'm Cheraine Stanford, WPSU.