CRITIQUE Interview with Judith Heumann

When you say ‘No, you can’t do this’, I hear ‘Change the World!’

Gisli Vogler, Teaching Fellow at the Centre for Open Learning, University of Edinburgh, interviews Judith Heumann on her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (Boston, MA: Beacon Press, 2020). Heumann is a leading disability rights activist and has held many major roles in organisations and US government, including the position of Special Advisor for International Disability Rights in the Obama Administration. The conversation was recorded and abridged.

GV: Being Heumann charts the extraordinary success of the US disability rights movement through the eyes of one of its most famous and charismatic leaders. It comes at a time when the history of disability activism has gained new attention, notably through the successful Netflix documentary ‘Crip Camp’. Why do you think this is a good moment to celebrate and reflect on the fight of people with disabilities for inclusion in society?

JH: I think what’s going on right now – and you make a point of this – is the combination, in the United States, of the 30^th anniversary of the ADA, the Americans with Disabilities Act, and the release of the Netflix higher ground Crip Camp that I’m also in. Actually, the book and the film were not scheduled together, so it was very happenstance that we were working on the book and the publisher decided they wanted to get it out in February because of the 30^th anniversary of the ADA this year. Then Crip Camp was moving along, and they wanted to put it out in March, so all of that came together.

I don’t know that I would call it a ‘moment’ after decades of work that the disability community has been doing here and quite frankly around the world; with, in the United States, laws like the Individuals with Disabilities Education Act, Section 504, and a number of other provisions in one of our other major laws that deal with discrimination in the area of disability, and programs getting money from the federal government, and things of that nature. Then ADA in 1990. So, we really, in the US, had a series of antidiscrimination laws that began in the 70s and it’s really not a moment, it’s decades. There is also the fact that we were not included in the Civil Rights Legislation of 1964. So I think it’s the increasing visibility and voices of disabled individuals, of cross disability related activities, and also the issue of racial diversity – all of these things coming together over these decades, not even yet really together but coming more together, which make this a topic that people are interested in learning about.

I guess also one of the important components of what happened is this: after the ADA, the voices of the next generation, the younger generation which now calls itself the ADA generation, have been gaining strength. They are an interesting group because they were benefiting prior to the ADA. They were benefiting from section 504, the provision that made it illegal to discriminate against one if the entity was getting money from the federal government. So that was addressing the university’s admissions policies and practices, for example, and requirements of accessibility and accommodation on college campuses and hospitals and public schools and education. Add to that the Individuals with Disabilities Education Act. I would say that it was those laws, in many ways more than the ADA, which were really impacting the generation that was around 1990, before and after. ADA has been very, very important without a doubt, but I really do think that people have been reaping the benefit of these other laws. Getting into schools that are less biased, not necessarily on their own but because the law required it; people getting into more fields of study; being able to get into jobs that historically they might have had more difficulty getting into. And I think, then with the ADA – because many of the people in the ADA generation had nothing to do with the development of the ADA – people were recognizing that they needed more than just the ADA and 504 and these other laws. They needed both implementation, but they also needed the voices of disabled people, and they needed disabled people understanding what their rights were. So, I really think that there is this crescendo that is still developing.

Another important part of what is going on is that we are seeing who the law is not impacting as it was intended to. We look at the Individuals with Disabilities Education Act, for example, which deals with early childhood up to 22-year olds. A lot of this law really is predicated on a number of things: one, the federal government has responsibility to oversee the state governments, the Department of Education has the responsibility to oversee what the Departments of Education are doing at the state level, because they have the obligation to see what’s going on in school district level. If any one of those things are not happening correctly then you can see how problems that are existing at the school level, at the district level, may not be addressed and they may be systemic. And when you look at economically poorer school districts with higher dropout rates, racism really is a part of what’s going on in many ways, because the schools are underfunded and the same rigorous standards are not necessarily being complied with. Many of our laws really are predicated on the ability of people being educated about what the laws are, what the laws require.

In the case of children in school, it shouldn’t be predicated on parents having to be the main drivers, but in so many ways parents really are the main drivers – understanding what their rights are, that they feel that they’re not getting what the law requires, filing complaints, going to court. Typically, this also means you need money to be able to get a lawyer and an advocate – not exclusively, because there is a program in the United States called Parent Training Information Centers, but they have a limited capacity. What you see are families who are poorer, who are really more likely (not exclusively but more likely) to be black and brown and indigenous families and immigrant families, but have less time because they may be working or have less knowledge for various reasons. And so, when you look at what we discuss here as the school-to-prison pipeline, you’ll see that there is a disproportionate number of black and brown kids who are dropping out of school early, who are winding up in the juvenile facilities and then, subsequently, the rate of recidivism for people who leave these systems is high. That, I think, are some of the systemic underlying issues that I have also witnessed working within the Department of Education. Some of these issues are being paid a little bit more attention to because of Black Lives Matter and other movements, but not yet to the degree that they need to be paid attention to.

This also perfectly links to my second question. The disability rights movement built on the major civil rights movements of the 1940s to 1960s. Your memoir is sensitive towards the connection between these struggles and between race and disability, from the impact of the landmark ruling Brown vs Education on disability rights, to your personal encounter with Constance Baker Motley, the first African American woman appointed to the US federal judiciary. You also reflect on how your parents’ flight from Nazi Germany informed your response to exclusion. How important was it for you to foreground the interrelationship between injustices related to race, ethnicity, and disability?

This is obviously very influential for me. Clearly as a Jewish disabled woman – you know my parents were 12 and 14 when they were sent out of Germany, and then we lost our grandparents on both sides and great grandmother on either side, plus my mother’s mother had a sister and child and they all perished. My father was in the marines in the Second World War and when my parents met, they were – like many of the families at that time – really trying to create new lives for themselves. The synagogue that we went to was also made up basically of 100% German Jews, all of whom had escaped Nazi Germany and had lost family members. So that was a very strong influence.

And then television in the 1950s was just coming in. I was a kid, but television was for me more than just amusement and distraction and films. Television also, for me was the news and my family were big consumers of the news. We got lots of newspapers everyday, and magazines, and we were always discussing things at the dinner table. So, as the civil rights movement was advancing, I was young and I wasn’t yet looking at disability as a rights movement. I was learning about the kinds of discrimination. And I would define it as hatred, that existed and exists against people because of their skin – seeing the National Guard needing to be brought in for black children to be able to go to schools that were overwhelmingly white and the anger, the deep anger that some of the people in those communities were expressing. And it wasn’t just on the side-lines, but also as people were fighting to implement the right to vote and to be able to come and go where others were able to come and go. All of that was really having an impact on me. And certainly, the march on Washington, Reverend King and other leaders that were emerging. I was looking and observing and learning – and part of what I was learning was how people were coming together.

Then, as I was getting older, I was formulating more of my own ideas of what we needed to be doing. It was very clear that we, as a group, needed to be coming together, because people with various forms of disability were not only being looked at as inferior people. There was also the view of doing away with disability, that the ultimate objective was that all disabilities were cured. The unwillingness to accept disability as a normal part of life, which doesn’t mean that medical advancements aren’t moving forward, but disability is here to stay. You know, it may be a virus, it may be a weak muscle. But we’ve always got war to count on, and we always have sexual violence to count on. We’ve got all types of things that we can be assured are causing disability. Mental health, depression, anxiety. Look at COVID and the impact that it’s having, not just on people who have disabilities. So, you know, disability is something that we need to accept and we need to recognize that the discrimination that we’re experiencing is wrong and that the discrimination that we experience is compounded depending on the disability, socioeconomic background, race, religion, and so on.

All of these things coming together obviously didn’t feel like, ‘okay, this is the game plan of what we’re going to do to address these issues’, because we were young. But the time at camp and in the segregated classes that I went to in school was really an opportunity for us to start thinking about what was wrong and that we needed to look at things in a different way. Take for instance the United States, the Montgomery boycott: a woman named Rosa Park in Montgomery, Alabama gets on a bus. She sits in the front of the bus and she is not allowed to sit in the front of the bus, because she is black. Then there was a one-year boycott by the black community and others – mainly led by the black community – that ultimately made the law change so that people could sit anywhere on the bus regardless of colour, at least legally. But for people with physical disabilities, saying that you could get on the bus and sit wherever you wanted – it didn’t make a difference if you couldn’t walk up the stairs. Right? People were beginning to relate to what was wrong with saying, your colour of skin should not determine where you’re allowed to sit, or how you are allowed to enter, or what school you should be able to go to. In the area of disability that was not the case at all, and for many it still isn’t.

What was beginning to change was that we did not want people speaking for us – they didn’t understand what we were talking about. Even the most well-intentioned people. The roles needed to switch. There are appropriate roles for parents, and then, regardless of the significance of the child’s disability, there needs to be a transition where the child begins to take on responsibilities as an adolescent, as a young adult, and as an adult. And those things were typically not happening because of the model that we were living in. It was ‘give money for cure’. In 1975, in the United States, the government acknowledged that at least 1 million disabled children were not in school at all. I went to school, home instruction, getting 2.5 hours a week, and really, who thought anything about that as being wrong? My parents did. And other parents did. I didn’t need any educational supports, I needed physical supports. I needed to be able to get into school and get help going to the bathroom and things like that. But, you know, the disparities were and still are astounding. And if you don’t believe that disabled children can learn and can contribute, just like if you feel poor kids are not going to benefit because they’re black or Latino – if those biases are heavily in place – then you’re not going to really address them. So, it was no longer left up – or shouldn’t be left up – to the ‘goodwill of the people’, whether or not a kid got into school, whether or not they get a good education. That’s not the way the laws are supposed to be implemented.

And so, I think, as we were moving forward and evolving, we were, in some way, making it up as we were going along. And by that, I mean, in New York City the buses were not accessible, the trains weren’t accessible. Streets didn’t have curb cuts. We were really beginning to create and pull together our voices. Telephone was very important. Getting to demonstrations was very difficult. But we were really learning that we had to go beyond complaining. We had to have solutions. For example, we knew that buses could be made accessible, but many of us had no idea how to make that happen. So, I think, the movement was becoming more sophisticated and really looking at injustice and calling it that. The fact that we discuss discrimination and injustice, and we talk about the need for justice – those are very important words that really are still relatively new. Also, most disabled people don’t identify as disabled, they are not in an organisation in any country. Which means that it’s also about looking at how we can get people to see the value of identifying, the need to feel. For some of us it’s pride, not everybody may want to take that label on, but at least to have enough belief in yourself that you have rights and you have a right to do things, and that your disability should not be the reason why you’re not getting a job or you’re not getting good education, or you can’t go to the movies or you can’t do whatever it is because you have a mental health disability, intellectual disability, physical, sensory, whatever it may be. This would not be happening if they weren’t increasing numbers of disabled people coming into the movement – seeing the value of calling it a movement. That’s the value of 61 million individual people – not trying to get something for themselves, but recognizing the importance of collectivity, of really being able to understand the barriers that people face, the discrimination that people face, and our ability to argue and supply changes that need to be made.

GV: Being Heumann offers a great insight into your distinct experiences as a woman with a disability, the way that your views and actions were perceived differently from other great leaders of the movement such as Ed Roberts. In particular, you point to the double damnation through the frameworks of sexism and ableism. For instance, how you were at times seen by those you confronted as angry and demanding, rather than strong and competent. The book title – Being Heumann: An Unrepentant Memoir of a Disability Rights Activist – suggests the continued strength that you draw from such feelings. How did you engage with this problem, what strategies did you develop?

JH: You say I had confidence. I think it is important to recognize that, I think I’ve been building confidence and it’s not just me. I think it’s definitely true that I had confidence in and I believed that the changes that we’re fighting for are achievable. Whether I have confidence always in myself and how I engage, that’s different. And as disabled women, we – I think to a lesser degree today, but I think still significantly – are impacted by the views that society has of women in general and of disabled women. And I think there’s a clear difference. For instance, in the women’s movement, in the US and in other countries, disabled people were not acknowledged. In really all the major movements, disabled people have not been seen as major contributors. Even people who may be older and have acquired a disability and may be in the leadership of various organisations because they started out within them when they were young – there is this expectation that when you get older you’ll have ‘frailties’ or whatever it’s being called. People don’t view them as disabilities and as strengths. Equally importantly, because other movements are not looking at disability as a normal part of life, it means that they’re not fighting for things like closing institutions, not allowing institutions to be developed, not looking at broader public policy about what is needed – not just in accessibility, but, for example, money for people to be able to hire and pay personal assistants and readers and interpreters and facilitators. It’s just not something that people know about or see, because it’s not part of our culture. This broader public policy discussion of what role the government should be playing in helping or supporting people to be able to continue to live their life as it was prior to their acquiring their disability – it is not happening.

Looking at the women’s movement or the MeToo movement: when it was really emerging here, disability was not mentioned until some of the disabled women reached out and they stuck the word in. It’s good, I’m not at all minimizing having the word. But it has to go beyond the word, not just with disability, but within other diverse communities. It’s having to unlearn and learn and consciously make sure that people are being brought to the table, so that there can be real, meaningful discussions that are happening, to look at what the problem is and how to rectify it. And I do not expect them to be rectified overnight. But if we are still having to be banging on the doors of other groups that are fighting for justice and against injustice, if they’re not making sure that we’re welcomed and included and a part of the fabric of the work that’s going on, that continues to adversely affect our community overall.

As disabled people, we need to be really speaking up and reaching out to as many people who don’t see themselves as having a disability or don’t feel that they have the right – that’s another very important thing. People will accept what they’re getting, you know, that they’re not able to go out and get on a bus or get on a train. They will ask, how much am I expecting? Is it really something reasonable? That’s one of the things that we started to challenge, starting with the veterans when they came home from the Second World War. At Crip Camp, and it could have been at many different camps, we were beginning to formulate a) that we had rights, b) that in order to get those rights implemented, we really needed to develop expertise. It couldn’t just be ‘we have the right to get on the bus, we have a right to go to school’. You really needed to look at what changes needed to be made, what knowledge needed to be put in place to allow those things to happen in a timely way. And we needed to become experts in areas that we never thought about, you know, becoming architects, becoming involved in regional planning and things like that.

GV: Alongside Fred Pelka’s What we have done, your memoir provides an excellent introduction into the disability rights movement and the politics of disability, and will undoubtedly help inspire future generations of scholars and activists. What books influenced you and your friends and colleagues in your fight for equal rights? Campuses across the US and Europe have seen increased scrutiny of the curriculum and the exclusion of minority voices across the disciplines. Which books would you want to be part of the standard resources for studying social and political issues today?

I think for me, some of the books that were written by civil rights leaders were important. And when I was growing up, honest, I read books written by a disabled guy, Hugh Gallagher, who argued against Roosevelt’s hiding his disability. My feeling was a little bit different to his because I really felt that it was likely that: if people really did know that Roosevelt had a disability, then people might not have had confidence in him. I didn’t have any confidence that in 1930s or early 40s people were viewed by their knowledge and capacity and disability wouldn’t have mattered. But they were good books for me to read. Irving Zola, who was writing some books about housing and other things in Europe – I think these were really interesting books for discussion. They’re not really looked at anymore and I think they’re important historical books. In the United States, there is also a guy named Joe Shapiro who wrote a book titled No pity.

I do think that what is important is that we not only look at disability studies, but that it’s really important that other studies, gender studies, black studies include disability. Disability can’t be something which is only discussed on its own because when it’s only on its own, in my view, it’s not causing the kind of analytical thinking that needs to be going on. If we are looking at impact, yes, disability studies is very important because that’s where you’re going to get more knowledge, but it’s got to be impacting journalism, communication, the various study areas. It has to be a part of everything, because if it’s just on its own, I think I have complete confidence that it will have a limited impact. But I think we can have a much bigger and more rapid impact if all the other study areas included disability as a part of their work, because they would expand their knowledge and discussion and look at some of the equally critical issues that need to be addressed.

Just to finish off, one of the things I was also interested in is what kept you going in moments of setbacks.

What kept me going? What keeps me going is that I believe that we have so much more to do. And it’s kind of interesting because – as I said, I had my disability when I was 18 months old and my experiences with segregated education, lack of accessibility, and on and on. Then I left Brooklyn and went to California to both go to graduate school and get engaged with the Center for Independent Living. My mentor at the university, my professor, was involved with the aging movement and we had discussions about my growing concern about what was happening to elderly people. In the US, there was a movement called the Grey Panther Movement, led by Maggie Kuhn, a really great woman, and she was doing work in organizing for Grey Panthers in California. Anyway, my professor invited me to serve on the board of this organization, called the Over-60s health clinic. And I was becoming concerned about how much of what was evolving was a repetition of what younger disabled people had been fighting against. And by that, I mean, there were some up and coming programs that won’t mean anything to you, like Unlock. Unlock was a big program in the city of San Francisco for the elderly and it was like adult day programs. These were segregated programs for older people who had memory issues or other forms of disabilities and had nothing to do at home. Maybe the family that were taking ‘care’ of them were working, or they weren’t working but they were a ‘burden’ on the family. So, they were setting up these programs that people could go to, segregated programs.

In the States, we’ve also had segregated housing, which I have opposed since I had any knowledge about it. When I worked at CIL we were big opponents of segregated housing and we had big fights with people, because the federal government was putting money into housing for the elderly, housing for the disabled and the elderly. And I’ve opposed all of that. So, I started really getting more involved on aging and disability issues, but when I came to DC in the nineties, my work in that area was going down because of my job at the Department of Education. But in the seventies to nineties I was really trying to get people to look at how we didn’t want to wind up in a situation to have to dismantle, for older people, what we were fighting for younger people. I was asking myself, why should things be different for younger people and older people? And a lot of things like this, I couldn’t really get into in the book. But these are some of the systemic issues that I’m very concerned about.

I also feel that our movement now is not as intergenerational as it needs to be. The movement for elders, older people, whatever the appropriate term is – I am part of that group now. I’m not really active within the group. It’s like the organizations for older people – I don’t know why they’re not reaching out to me and other older disabled people to get us on the board and to learn from us. They don’t see us as being a part of it. This is because people like myself speak out against things like the word ‘care’. I totally hate the word ‘care’. I don’t want anybody to think that they’re taking ‘care’ of me. Because for me, the word care is a pejorative word, it is a word that is looking down on us. It is not presuming that we’ve got the capacity – regardless of what’s going on – to really exercise choice. I guess that’s why I also feel very strongly about the need for government to be paying for the work that people are doing. You know, governments around the world assume that there are responsibilities that other family members need to take on, if there’s someone in the family who needs it, and then of course, this is an appropriate assumption, to a degree. But the question is, for how long and how much and when the people helping someone are being protected because the disabled person becomes a ‘burden’ – the disabled person is NOT a ‘burden’. The disabled person is a person, a human being. But both the disabled person and the family members have been put at really bad risk by this system. That’s why, I think, we really need to be looking at this discussion in a different way, which engages non-disabled people in their teens, twenties, thirties and forties, not only to be looking at why we need broader policies and practices so that their family members, their mothers, fathers, and grandparents are not at risk, but also preparing for their future. And people need to be invested in that in a way that I absolutely think they’re not, because of the absence of discussions about disability in the media.

Thank you so much for this wonderful conversation, I’m so grateful that you took the time.