Judith Heumann – disability warrior – Conversations

Sarah Kanowski:

When Judith Heumann was a toddler, she caught polio. Judy was one of the nearly 43,000 American children affected by the 1949 epidemic. Polio left Judy paralysed. She was unable to walk and with only limited use of her hands and arms. But Judy and her parents refused to accept what being disabled was supposed to mean for her future. And crucially, Judy was willing to make a fuss about it. If you’re over 40, you probably remember a time when buses and public bathrooms weren’t wheelchair accessible, when there were no ramps on the footpath and no sign language interpreters at press conferences. These kinds of revolutionary changes came about because of disability rights activists like Judy. They put their bodies on the line to change the world, and they had a lot of fun doing it. Judy went from sit ins and street protests to serving in the Clinton and Obama administrations, and she became the World Bank’s first advisor on disability and development. Hi, Judy.

Judith Heumann: Hi. So nice to be with you.

Sarah: It’s so good to have you here. You were born in Brooklyn. Was that a neighbourhood where all the kids hung out together?

Judith: Actually, I have to confess, I was born in Philadelphia, but I only lived there for three months. So I totally I totally claim Brooklyn. Yeah. No, I’m from Brooklyn. And we had a very interesting neighbourhood. Middle class neighbourhood, you know, police officer, a firefighter, teachers and many of the people who moved in came in about the same time. My parents bought a place there, I think it was, like 1946-47 and it was all small family detached, attached homes. Like our house was attached to our next-door neighbour. If anybody next door was having an argument or anybody in our house was having an argument, we could clearly not only hear the noise but understand what people were saying. The neighbourhood was you know, there were a lot of kids. And so we were all relatively similar age. We had a lot of fun together.


Sarah: How did you get about as a as a 6 or 7 year old? Or even younger?


Judith: I had a wheelchair at that point in time. There were no motorized wheelchairs. If you could come and look at my neighbourhood, you would laugh. But there was a little incline between my parents’ house and my friend Arlene and my friend Mary. And I wasn’t very strong. And when I my mother would push me up the driveway so I could get to the sidewalk, and then I would push myself from our house two doors to Arlene’s house. And if I didn’t hold correctly when I was pushing the chair, it would roll back. But the incline to the naked eye, you would look and say, what incline? But that’s because my arms weren’t strong. And with the slightest incline I would roll back and then I would go to my neighbour’s house, Arlene Omari’s. And because there were steps and we had no mobile phones or anything like that, I would just call in or call up and say things like, Arlene, you want to come out and play or Mary do you want to come out and play. But that was the way it was. Hmm.


Sarah: What did your parents do for work there in Brooklyn?


Judy: My parents were German, Jewish, and my parents had been sent out of Germany. My dad was 14 in 1934 and my mom was 12 in 1935. And we lost our grandparents and other relatives on both sides of the family. And my parents were very much kind of moving forward as they were really coming out of how their parents had been murdered. And my dad and his brother started a little butcher shop. Everybody on my father’s side of the family was in the meat business. We had my father and my uncle’s store called L W Heumann Meats. Then we had another cousin who had Heumann’s meats and another cousin who had another butcher’s shop. And they were in Queens and Brooklyn.


Sarah: Judy, what had a doctor advised your parents to do with you after you’d recovered from polio?


Judith: Yes. That was very interesting, actually, because when I was about 36 years old, I was home visiting and my father and I were at the dining room table and my mom was upstairs and my father started telling me about how a doctor had recommended that they put me in an institution when I was about two years old. And I said to my father, Dad, that’s not true. And he goes running up the stairs. And my mom’s name was Elsa is going, Elsa, Elsa. Isn’t it true that the doctor wanted us to put Judy in an institution? And my mother said, yes, that’s the first time I ever heard of that. But I think, you know, retrospectively, it wasn’t a surprise because there were many people, kids that were being put in various forms of institutions, but it was clear that my parents wouldn’t have any of that. I think it for many reasons, but one of them certainly was because of how they were survivors and how the first group of people who were murdered by the Nazis were disabled individuals. And I think my parents just made a decision early on, you know, when I after I had polio, that they were going to treat me like my brothers. They were pretty going to have to give them an amazing amount of credit for their vision of what needed to happen and how they really kind of plodded through


Sarah: What happened when it was time for you to start kindergarten?


Judith: I was five years old. My mother, like the other mothers in the neighbourhood, took me to school to register me and she pushed my wheelchair up, is walking distance from our house. The school wasn’t accessible. We knew that. But I presume my mother was going to pull me up the stairs to get to the school and pick me up at the end of the day. And when we went to the school, the principals that I couldn’t enrol in the school because there was a fire hazard. So my mother took me home and the board of Ed said that they would send a teacher to our house, which they did five days a week, but only two and a half hours a day of education. So I had no kindergarten and my mother kept looking for other schools that I possibly could go to. But that wasn’t successful. So finally, when I was nine years old, in the middle of the fourth grade, my mom got a call. I had been on a waiting list for segregated classes, and she got a call to bring me to. This school is a regular school, but had classes in the basement club, health conservation, 21 classes. I later learned that Batman, any of the kids who were in the HSC one classes, had a physical disability and difficulty and not able to walk up and down stairs, which meant that a school bus would pick us up with a lift. And take us to school and that there would be people working in the classes who could help us do things like get our coats on and off, go to the bathroom, eat lunch if you needed help feeding and things of that nature.


Sarah: And what about the academic side? Like what kind of expectations do the teachers have of you once you did manage to start school?


Judith: You know, I think it depended on the teacher, but the curriculum was not the same as the nondisabled children had in the school. There was no teaching and learning and testing like in the regular classes.


Sarah: You’d grown up with lots of friends in your neighbourhood, Judy, but they were able bodied on the whole. What was it like being around other disabled kids?


Judith: So I don’t use the word able-bodied. I use the word nondisabled. Thank you. But yes, I grew up I grew up around kids who didn’t have disabilities in the neighbourhood or in my family, for that matter. So I first started meeting other disabled kids on a regular basis. And that was really a very important time in my life. Teaching was bad. Traveling to and from school was a lot. But we did get to become friends with each other. It didn’t at all negate what I was doing in my neighbourhood with my brothers or my neighbours or my cousins or friends. But it was different because we had similar stories. We were able at a young age to begin to start talking a little bit about disability and what we were experiencing as far as bias and low expectation. Surely that was that a major part of the discussion when we were nine, 10 years old, because they think it’s something, you know, that we would just gradually beginning to recognize that we were not being given the same opportunities as others who appeared not to have a disability. It’s kind of confusing because I do not support segregated classes or segregated schools. I think it’s really important that disabled and nondisabled children go to school together. But had I not had the opportunity to really engage with other disabled people my age, I think things would have been very different.


Sarah: You also started going to summer camp with other disabled kids. What was special about camp?


Judith: Well, I think on the one hand, the camps were like other camps in the US camps. They’re a big deal. But I didn’t get to go to the camps that my brothers went to because those camps were not accessible, and they didn’t take kids a physical disability. If I was going to go to an overnight camp, I was going to go to a camp for disabled kids. And the first camp I went to is one called Camp Oakhurst, which is in New Jersey and still exists. And the next camp that I went to was Camp Jened which is where Crip Camp was filmed. The difference for me between Camp Oakhurst and Camp Jened the age that I was. So when I went to Camp Oakhurst, that was like 9, 10, 11, I think I went to Camp Jened that or I was 12, 13 and went there for like four years or so. So, you know, when I was 12, 13 years old, I was obviously very different than when I was nine. And so it was an opportunity as a teenager to do a number of things. One was to be a teenager. You know, we dated, we went to dances, we did all those things. But at that point, if we would have been at a camp with nondisabled kids. It would likely not have been the same experience because here there was. Now, we all had disabilities, and that really meant that we didn’t feel negatively or frightened or that we didn’t want to associate with each other, we did. And I think we saw a commonality as opposed to now. There were some differences, as some of us had speech disabilities. Others didn’t. But I think Camp Jened really afforded me and others opportunities that we would not have gained by being at another camp.


Sarah: Watching Crip Camp, the documentary on Netflix in which you featured Judy, one of the things that’s really striking, well, two things, actually. The first thing is how much fun it looks like you’re all having as teenagers. But the other thing is, is how everyone is really listened to, like however long that takes, that each person present is really attended to.


Judith: I think the point that you’re making about how we listen to each other was very much because we didn’t even see it that way. I think it’s fascinating for me the number of people who come in on that exact point, that people are very struck by how people were so attentive to listening to what people had to say. And I think it was just so very natural because, you know, we found people at interesting things to say were funny or sexy or whatever it was. And I think it’s also very true that frequently many of those same people would not have had the same respect of people listening and hearing their views. But it was just something that was natural.


Sarah: You had this world with disabled kids at the disabled, kids at camp, but you went to a mainstream high school. What happened at your graduation ceremony, Judy?


Judith: So I graduated from high school. We had a very large class. We had 1700 seniors, and we couldn’t graduate from our high school because it wasn’t big enough. So we had to graduate from one of the colleges in the neighbourhood in Brooklyn. And I was getting an award, and all of the people who got awards were supposed to go on the stage. And my father went to pull my wheelchair up the steps because, of course, there was no ramp. And the principal came over and said, I could just sit at the base of the stage and he would come over and give me my award. Well, everybody else that was getting an award was going to be on stage. And my father said, no, he would pull me up on the stage. I was mortified. I was so embarrassed. I don’t know whether anybody saw what was going on. But to me, it was just… here I was graduating, supposed to be on the stage with others who are getting awards and in front of everybody, the principal was like, no, no, no, it’s you, and she doesn’t have to come on stage. Honestly, it would have been me to my own. I am sure I would have left because I was too humiliated. And then my dad pulled me on the stage and the principal made me sit in the back. And you know what was going on as you would get an award and you would come to the front. But because I didn’t have a motorized wheelchair then still, and I had to push my wheelchair. I couldn’t get all the way to the front. And I just pushed myself a little towards the front and he came and gave me the award. So it was all embarrassing, humiliating, but a real indication of the time.


Sarah: And a testament to the determination of your parents. Were you surprised that your dad was insistent or was that in keeping with his character?


Judith: My father was a Marine in the Second World War. I think, you know, the answer to that question is he was persistent, but unlike my mom he had never really confronted a situation like that, you know, in my uncle at a butcher store, and they would he would leave for work between 3.30am and 5 in the morning and come home like 7 or 8  at night. So my mother was the one that was primarily dealing with many of these issues


Sarah: In spite of a lot of practical challenges, like the fact that buildings were not wheelchair accessible. You moved out of home to go to college and you wanted to be a teacher. What stopped you from getting a teacher’s license?


Judith: So, you know, if we think about Camp Jened and who we as teenagers who are beginning to look at, and what did we want to be doing when we got out of high school, we were looking at who were our role models. Of course, there were very few you know, you didn’t really see other disabled people as teachers or professors or people in merchandise or whatever. So there were limited jobs that disabled people as a role were getting social work, accounting, speech therapy. But math teachers. But. I wanted to be a teacher, and so I’ve called an organization in New York, which is the national group here called the American Civil Liberties Union. And I was a freshman or sophomore, and I said, look, I want to be a teacher, but I think I’m going to be denied my license. And the person on the phone said, well, just go ahead and do whatever you would normally do. And if you have a problem, call us. So I did and I took my written exam, my oral exam, or were offered in completely inaccessible buildings. At that point, we still didn’t have any of our major discrimination laws in the US.

And then I had to take a medical exam. It also was offered in an accessible building. But I passed my written and I passed my oral, but I failed my medical. And the specific reason I failed my medical was paralysis of both lower extremities, because of poliomyelitis. So I’d been denied my license because I couldn’t walk. So I called the ACLU and I said, OK, you told me to do this. Now I’d like to come down and talk about whether you could represent me. And they called me back and said, no, they didn’t need to have a meeting because what had happened was that discrimination? They denied you my license for medical reasons. And I tried to speak to this person on the phone and explained why that was ridiculous. But nothing happened. But I do want to put a caveat in, which is the new caveat. This happened in 1971, about three or four weeks ago. I got a letter 51 years as a few years later apologizing for the fact that they turned me away. I got a letter from the CEO apologizing.


Sarah: I’m glad you got that letter, but that wasn’t that wasn’t on offer 51 years ago. So what did you do? You were denied your license on these spurious medical grounds. The ACLU said they couldn’t support you. What did you do?


Judith: Well, I, I don’t believe in magic, but there was something the stars were aligned. So on a Wednesday, an article appeared in a newspaper in the States called The New York Times, which probably many people in Australia have heard of. Anyway, it’s a very prestigious paper and it had been pretty conservative on disability. I never would say that The New York Times was an advocate on disability rights issues at that point in time. But a friend of mine was a student at NYU, and he had a friend at The New York Times, and he wrote a piece about how I’d been denied my license. And the next day, there was an editorial in The New York Times called something like Heumann vs. the Board of Education. That was a Thursday. And then I got a call from a gentleman named Roy Lucas that same day that Thursday, asked me if he could talk to me about my experience. He was a civil rights lawyer, human rights lawyer, and he was writing a book. And I hadn’t thought about doing anything on disability. But based on what he had read in The New York Times, he went to talk more about it. And I really was laughing at that point about what I, in fact, file a lawsuit about because I didn’t know any lawyers. And I was very much worried about, well, you know, I’ve actually never taught in a classroom what would I be exposing myself to? What if I didn’t do a good job? But it would adversely affect other disabled people getting a teaching job. So that was where I was. And when this call came out of the blue from Roy, I really liked him. And I kind of boldly said to him, I don’t have any money but would he be willing to represent me. And he said, yes. And then. The next day, I was asked to be on this national morning television program, and then there were editorials in the other major papers and things kind of lined up.


Sarah: You were only in your early 20s, Judy. How did you go from being thrust into the media spotlight? Was that a comfortable space for you?


Judith: There’s a program here in the states called The Today Show when they called and asked me if I wanted to be on it. I thought, oh, my God, you’ve never done anything like this before. But how could I turn it down? Because it was a real opportunity. My friends and I had been working on setting up a group called Disabled in Action. And it was a national opportunity to talk about not just my denial of a job, but to be able to talk about the kinds of discrimination disabled people in the United States were facing. And so I said, I’ll do it now. You know, I look back at some of these things and, you know, if I was older, maybe I would have thought more about, well, what about this or what about that? But at that point, I can only think this is an opportunity. I am not going to let get by and I could do it.


Sarah: And I guess from the way you describe your family, you know, your parents had encouraged you and your brothers to have opinions and speak out and debate. So you had been training in a way?


Judith: Absolutely. We would invite friends to our dinner table, and sometimes you would forget to say, you know, our dinner table appears that it wasn’t a typical dinner table apparently left and people would sit down and have dinner and not talk very much. But that was never our house. We always had debates or discussions. And my father was always being provocative. And it was frequently, you know, that we would have big arguments at the table or he would send you off to look in the encyclopedia and read something. If you didn’t know what it was or if he thought you needed to learn about it. And of course, for us, it was nothing unusual. So you’re right. I was prepared.


Sarah: When your case finally came to court, who was the judge?


Judith: Like, that’s why I’m saying things are so amazing. We had the first African-American female judge to be appointed to the federal court. Her name was Constance Baker Motley, and she was a civil rights attorney. So she basically directed the board or encouraged the board of Ed to give me another medical exam. And so they did. And that’s how I got my license at Atticus. I saw another doctor. And this doctor was much younger and basically profusely apologized for what had happened. But it was really good because what was going on, the opportunity was about the lawsuit that getting my teaching license. But it really was provoking discussion, really in many different parts of the country, because there were articles that appeared in papers and magazines around the country for a year. So it really was a story of a young person denied a teaching license, but we and my friends and others around the country were really able to use it as another example of the type of discrimination, baseless discrimination that we were experiencing because of our disability.

Sarah: Judy, in the 70s, you moved to California, to Berkeley. What kind of atmosphere was that when you arrived?


Judith: So, cooling off a little bit from the 1960s and early 70s with the anti-war movement. But it was a real bed of activism in the area of disability. And there was an organization that had been set up called the Berkeley Centre for Independent Living. And two of the departments at UC Berkeley Public Health in City and Regional Planning and asked me if I would be interested in applying to graduate school and coming out to Berkeley to study. At that point, what they were looking to do is to bring the activists out to Berkeley who they then wanted to go back to our own communities and start similar programs through the Berkeley CIO. Long and short of it was I went to Berkeley in the School of Public Health. Living in Berkeley was a great opportunity for me to work with other activists and quite a number of my friends from New York moved out to Berkeley and got involved also with the Berkeley CIO. And I think what was very important for me about Berkeley was the community was much smaller than New York. It was easier to get changes made because it was a smaller environment, and we knew the politicians more. And it was just easier, obviously, physically, but also just politically. It was a wonderful opportunity for me, very glad that I did it.


Sarah: One of the things that was new for you in in California was that you were able to hire personal care assistants. What was different about having paid helpers, Judy?


Judith:  Well, I had had paid assistants when I went to undergraduate school, but it was the first time that I was able to get money from the state while I was in school, because I wasn’t I didn’t have a salary. And I also was able to hire personal assistants much more readily because there was a system in place. The centre had interviewed people who were interested in being attendants and screened them. And then the individual person who needed to be attendant would interview and hire and train their own workers. So that was a real eye-opening experience that I had less restrictions. I could get up and go to bed more when I wanted to as opposed to when somebody was available. And that was also something that I attributed to when I went to camp, because when I went to camp, the counsellors there also help you get in and out of bed. And at that point, it was a big deal because my mother was the only one helping me. So being able to make decisions like what I wanted to wear was something that frequently was more dominated by what my mother said she had time to decide. So, all those things are very important. You know, I think people frequently don’t think about the stages that young people are learning and beginning to make decisions and beginning to have arguments with the family or someone “No don’t wear this, wear that. No, I’m going to wear this, not that.” And that was very important, I think, in the growing up stages.


MUSIC:  Podcast. Broadcast. Online. This is conversations with Sarah Kanowski. Hear more conversations any time on the ABC listen App. Or go to ABC dot net dot au slash conversations.


Sarah: And bear with us as a slight technical hiccup means we’re going to continue the rest of this conversation with Judy Heumann on the phone. So, Judy, this is 1977 and you’re living in California. And the federal government was stalling on signing off on regulations that would prohibit discrimination against people with disabilities in any organization that received federal funding, schools, hospitals, transport systems, all of that. This was ground-breaking legislation. You and other activists had had lobbied. You’d held meetings with officials, but nothing was happening. What did you decide to do?


Judith: Basically, what was happening was there was a change of administration, and the Republicans were leaving office and they had refused to sign the regulations that had been drafted and had basically been cleared. And then when the Democrats came in, Jimmy Carter, he had said that they would sign the regulations. And when the ministry for the agency that have responsibility for implementing regulations, when their new head of ministry was appointed, we were very concerned because he had a history of having worked as a paid lobbyist for a number of organizations that were now going to be covered by the law. The law basically said if you get money from the federal government, you may not discriminate against someone based on their disability. And the regulations go into great detail about what that means. And when the regulations were not being signed under the new administration that many disabled people had supported, we had established an organization of the American coalition of citizens with disabilities. And we decided in February of 77 that if the regulations were not signed by April, that we would have demonstrations around the United States, which is exactly what happened.


Sarah: So, you were part of the big demonstration in San Francisco. What happened at the at the culmination of that demonstration, where did you and other protesters head?


Judith: They were ultimately about one hundred and fifty people who camped out in this federal government building in San Francisco


Sarah: To organise a sit-in is no small feat. What were the extra challenges, given that a lot of the protesters camping out had various disabilities? What did that mean logistically for a sit in?


Judith: Well, I think any group that was going to be. Staging a demonstration like this would have had many logistical issues to deal with, things like food and how to keep safe and how to keep people meaningfully occupied while in the building with activities. But additionally, for disabled people, it was everything from deaf people in the building needing sign language interpreters and hearing disabled people learning sign language. And people like myself who needed assistance in getting down to the floor to sleep on the floor and getting back in our wheelchair and up going to the bathroom. So, we were able to mobilize support within the building. We had food that was brought in by one of the groups called the Black Panthers.


Sarah: The Black Panthers brought food to your sit-in?!


Judith: One of the members of the leadership of the demonstrations was a disabled man who is one of the founders of the Black Panther. And so, when he got involved, he spoke to them about bringing food in. So, they brought food every day to people in the building. So that that was one very important thing, that we didn’t have to snap that food was the best food in the world, obviously. And people are getting bored by it. But it was the generosity of the organization to make sure that people were, in fact, getting fed.


Sarah: Hmm. What was the mood like inside that that office building that you’d all occupied? What was the atmosphere?


Judith:  I think it was one of sincere commitment, not everybody could stay the whole time. Some people had to leave, and we would sneak some other people into the building. But I think people felt really proud. People were really beginning to recognize that we were making a difference and that, you know, for many of the disabled people there, it was the first time that well, it’s the longest occupation of a federal building in the history of the U.S. So that in and of itself historically is a very important message. But I think people really felt empowered. And the empowerment was them as individuals and collectively.


Sarah: Two weeks into that sit-in, a group of you left the sit-in in San Francisco to go as a delegation to Washington who met you at the airport in Washington?


Judith: Well, we were supported throughout the demonstration by many groups, including labour unions. And so, the Machinists Union met us in Washington with a big truck and a big moving ramp. And we all travelled around pretty much in that very big truck. We slept in a church in pews and on the floor while we were there. And we had demonstrations outside of the White House, outside of President Carter’s church. A group of us went in to meet within the White House to talk about the regulations and why they were important and how we were very concerned about changes that were being proposed. You know, there were also people who joined from other parts of the country in the demonstrations in Washington, D.C. And ultimately the regulations were signed in a very low-key way. The secretary, whose name was Joseph Califano, did not invite any of the protesters. Did not make a big deal out of the signing, which I think, you know, for me and many others was really another slap in the face because this was like a major civil rights piece of legislation and regulation. And I think his pride was bruised during the demonstrations in Washington. We had had peaceful demonstrations outside of his house. We had a sunrise religious service. We had a minister who did a sunrise service. We gave out flyers in his neighbourhood to the kids there, encouraging them to talk to him about signing the regulations. At any rate, they signed them very quietly. Nobody got invited. And he’s never spoken to any of us since then.


Sarah: You were a singer, Judy. You’d always loved singing. Were you singing during these protests or in the back of that that removalist truck that was driving you and other delegates around Washington?


Judith: Yeah, that was me singing in that in the vehicle. Amazing Grace.


Sarah: Your focus then switched to legislation that covered the private sector, which was the promise of the Americans with Disabilities Act. But again. And that was slow going, trying to get those laws passed. What happened on March 12th, 1990?


Judith: So, I think it’s important to realize that the disability community in the U.S., like in Australia has slowly been growing and expanding. And after the 504 regulations are being implemented, the law still did not protect disabled people against discrimination in the private sector. So, starting in the mid-80s, there was a big move on developing a piece of legislation which ultimately was called is called the Americans with Disabilities Act. And the date that you’re referring to is something called the Capitol Crawl, where disabled people from an organization called ADAPT basically went to our capital, which has many steps to get up on one side. And many people were crawling up the steps to make the point that we needed this legislation in order to ensure removal of barriers and accessibility and to the broader community called the Capitol Crawl.


Sarah: I think it was four months or so after that Capitol Crawl that that act was passed outlawing discrimination against people with disabilities. What do you remember feeling in that moment on that day when President Bush signed that law?


Judith: I think, you know, people around the country felt very proud that this major hurdle had been overcome, where we had been able to convince the Congress that there was a need to create a national piece of legislation that made it illegal to discriminate against disabled people in the public and private sectors in many areas. And one of the most important aspects of the ADA was the growth of our movement, because we had to be able to work across the district for our congressmen and women and across our states for our U.S. centres, in which we have two in every state. And ultimately, it was a bipartisan effort to really finally bring everyone to the table. And it wasn’t that easy.


Sarah: This was this was all happening in the public sphere, in your activist life. Who did you meet at a party in Oregon a year or so later?


Judith: (laughs) So, this was after the ADA had been signed. There’s an organisation of in the US called Mobility International U.S.A. and the leader of that group is a woman named Susan Segal, who actually came to Australia for, I guess, about a year, I think, studying recreational therapy in the area of disability. And she came back to the U.S. and started this group called Mobility International U.S.A. And I was invited to come and spend a week there and do some talking. And it’s a beautiful area in Eugene. And they had a group of people from Mexico, and that’s where I met my husband.


Sarah: What drew you to him? What attracted you to him?


Judith: So, when I got there with a friend of mine who lived in Berkeley but was from Mexico. We went to a barbecue and there was this guy there. And I said to my friend Margo, this guy has got really cute shoulders. I really loved his shoulders and he turned around and he had a beautiful face. And that’s my husband. We’ve just been married 29 years. His name is Jorge Pineda. Yeah. So, yeah, that was that.


Sarah: When you were invited to take up a role in Bill Clinton’s administration, a really big job, and you were unsure about accepting it. Your husband said you should go for it. You’re a chingona. What’s a chingona?


Judith: I would interpret as kind of you know, you had balls.


Sarah: A girl with balls.


Judith: Yeah. You know, it’s you know, you can do it. It’s like you’re strong. Yeah.


Sarah: Did you always feel like you were up to that role? You had this big job in Clinton’s government and then in President Obama’s administration. What was it like going from activist to being on the other side of the table, being within the government?


Judith: Well, my job with the Clinton administration was exciting and challenging. It was a great opportunity. I’m really glad I had that opportunity. I’m forever grateful to the president for selecting me for that position. But it was a real challenge for me because I, on a regular basis, was confronted by the discrimination that still existed in spite of the many laws that had been passed, some of which my staff and a staff of about 400 people. And it was our responsibility to help ensure that a major U.S. education law and major law in the area of employment and provisions in the area of research were carried out. And it was a great opportunity because I was meeting many people that I didn’t know before. Many of them non-disabled running education associations and other types of organizations. And challenging because, when you’re just there on the advocacy side, it’s one thing really pushing, pushing, pushing. When I was working in government, it in part was my job to keep pushing on both sides to make sure that the government was really learning about what needed to be done more effectively, being able to develop strong alliances between the different communities, because for me, it was very important that the disability community believe that I was doing my best and that my staff was doing their best.


And so, we try to afford many opportunities for people to be able to come together and to work together or develop new legislation, and there was a lot going on at that time, but it was an opportunity that I learned so much from and really forever grateful that I had that opportunity.  I really grew a lot because I had to do things that I didn’t think I was able to do. I had never even thought about. So, you know, testifying before Congress on budgets and controversial issues and feeling secure enough that I would really push my ideas forward. I think one of the important aspects of that job is we were able to assemble a senior leadership team that really worked very harmoniously together. And I think that really enabled us to do some pretty good work. I think we left a little bit better than the way they were. But I would definitely say, you know, things are not yet where they need to be in any country.


Sarah: Did your parents live to see that professional success of yours Judy?


Judith: My dad, unfortunately, passed away even before I got married, so I met Jorge in 91. So, he didn’t meet my dad, but he did meet my mom, and my mom did live for a number of years after I got the job. So, she actually was there for the first term of President Clinton. And then when he was re-elected, she was alive for another couple of years. So, yeah, she definitely saw that. And she came to D.C. a number of occasions. She was very proud. It also allowed me to show her off.


Sarah: (laughing) What did Washington make of Ilse Heumann?


Judith: You know, I think people respected her a lot. Yeah.


Sarah: When you think about all the different qualities, and I guess factors that allowed you to become the activist you’ve been and have the influence you’ve had. What do you think is the most significant?


Judith: I think the ability to continue to work with many people from around the world. I started doing some international work…actually one of the first countries that I visited when I was doing international work was Australia. I’d been in Germany and Sweden and then Australia, and it was a great experience. And for me, what’s been very…well I think very meaningful parts of my life, but really the ability to work with disabled people from around the world is a wonderful opportunity. And I hope I made a little contribution.


Sarah: I think more than a little contribution, Judy. I wonder when you reflect about the different ways that society treats people with disabilities. What does that say more generally about us society, the way it enables or doesn’t enable people who are differently abled?


Judith: Yeah, I also don’t use that word.


Sarah: Tell me…


Judith: (laughing) I don’t use the word able-bodied, and I don’t use differently abled.  I just say disabled and non-disabled. But I think we’re still on a journey. And the journey, I think still is one where non-disabled people are fearful of acquiring a disability. And where many people who may have disabilities, specifically people with invisible disabilities such as depression or anxiety or bipolar or other forms of invisible disabilities are afraid to disclose, because they’re afraid of something adversely happening to them, not getting a job, not being able to advance in a job, receiving additional discrimination in the community. We have a lot of work to do to really recognise that disability is truly a normal part of life. And instead of being fearful of it as a community, regardless of what country you live in, we need to be recognising the changes that continue to need to be made. Breaking down the barriers for employment, breaking down the barriers for being able to live in the community, breaking down the barriers where people are not able to get, the financial support and ability to hire people as personal assistants, sign language interpreters, readers, ensuring that technology which is being created is accessible and really looking at diversity as being inclusive of disabilities of black and brown and Indigenous and gay and straight and Muslims and Jews and Christians and whoever it is that we really…


Disability cuts across all these communities. And as a movement, we really need to continue to grow, not just to be representative of the one billion disabled people that WHL and the World Bank state that at least 15 percent of the world’s population have various forms of disabilities. But we need to really, I think, as we’re in some ways, struggling with the diversity that exists in our countries and the ability to welcome all people. The disabled community, I think, is really trying to forge ahead and be an example for ourselves as disabled people, because we’re also needing to learn about our different communities within our community that we are not discriminating from within ourselves against others, but then also being a real, I want to say beacon, you know, of what can happen to really make our community one where we are respectful of everyone.


Sarah: Judy, that sounds like a great community to belong to. Thank you so much for sharing your story on Conversations.


Judith: Thank you so much.  It was a privilege to be asked.


Sarah: Judith Heumann was my guest on conversations today. And Judy’s memoir is Being Human – The Unrepentant Memoir of a Disability Rights Activist. And if you get a chance, have a look at that documentary, Crip Camp, which is on Netflix and features Judy. And it’s got amazing scenes inside the sit-in in San Francisco in 1977. I’m Sarah Kanowski. Thanks for bearing with our technical difficulties today. I’ll catch you soon.



Comments are closed.