Judith Heumann KPR Transcript
Judith Heumann interview with Kaye McIntyre of Kansas Public Radio's "KPR Presents"
Kaye McIntyre:
Produced at home and broadcasting from Kansas Public Radio at the University of Kansas, this is KPR presents, I’m Kaye McIntyre. Today on KPR presents, It's a conversation with Judith Heumann. She's a lifelong advocate for the rights of people with disabilities and the co-author, along with Kristen Joiner of “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist”. She's also the featured speaker as KU marks the 30th anniversary of the Americans with Disabilities Act. It's ADA 30, nothing without us. October 28th, 29th. Welcome, Judy.
Judith Heumann:
Hi Kaye so nice to talk with you.
KM:
Great to have you here today. I'd like to start our conversation with a disclaimer of sorts or perhaps an explanation of why your story meant so much to me personally. My father was born with cerebral palsy. He was a really incredible man. He was smart, he was successful, he travelled around the world. And yet when he was born in 1933, his parents, my grandparents were told the same thing the doctors told your parents after you contracted polio. That the best place for your child would be in an institution. Judy recognizing that my father was born long before you were, take us back to that era. What we're society's expectations for people born with disabilities?
JH:
Or who had disabilities, whether they were born with them or not. First of all, it's great to be on your program. Thank you for inviting me. I think it's fair to say that there were low expectations. And I say that because, you know, continue with my story. And I don't know your grandfather What happened to him with edge, with his education. But for me, when my mother took me to the local public school to enroll me and she wasn't expecting anything from the school. She was going to take me there, pull me up the stairs. I'm sure she would've helped me go to the bathroom, like come during lunch or something and then pick me up. But the principal said I couldn't go to the school because I was a fire hazard and that the Board of Ed would provide a teacher. And they did but they provided no teacher for kindergarten. And then I didn't get into a special ed program till I was in the middle of the fourth grade. And for the first, second, third and half of the fourth grade, I had a teacher who came to my house one day for an hour and another day for an hour and a half. And that was it. And so you can clearly tell from the level of education that I was getting that they really had no expectation. It wasn't against the law because at that point, there were no laws specifically on education for disabled children. But nonetheless, I shouldn't have needed any law, I should have been able to receive the same protections as my brothers did if my brothers only went to school an hour and a half a week, my mother and father would have been considered to be abusive parents. Because kids went to school at least six hours every day. Right. So I didn't even go to school, the equivalent of one day of education like my brothers. So I think really there were limited expectations. There was really very little of a disability rights movement at that point. In the early 1950’s, I would say that the veterans from the Second World War and still from the First World War were definitely the most active groups. You saw the blind and deaf communities beginning to set up their own organizations. United Cerebral Palsy, at least in the east coast, and I'm not an expert on this, but they were definitely active in New York. And the head of ABC had a daughter who had cerebral palsy. And so he was very involved in trying to get disabled kids in school. And although Franklin Roosevelt had had polio, and while he hid the fact that he use braces and crutches and a wheelchair many times. And that was not known many. Nonetheless, many people in reality know that he did. But no, I mean, at that point, I would say limited expectations from the general society.
KM:
Other than not going to school five days a week, your book opens with you talking about your childhood growing up in Brooklyn. And it sounds like a really happy childhood playing with neighborhood kids, going to Brownies, going to Hebrew school, going to piano lessons. But everything changed one day as you and your friend Arlene, we're heading to the candy store. Can I have you read that excerpt from your book?
JH:
Sure. I think it was a beautiful sunny day, but it might have been cloudy. I don't remember. What I do remember was being caught up in my conversation with Arlene as she pushed me and my wheelchair, talking about what we were going to buy at the candy store are what we wanted to do later that day. We were pleased to be walking around the corner to buy sweets. In front of Dr. Nicholas Brick House, which I knew was Dr. Nicholas house because I'd been there with my mother for her doctor's appointments, we paused to cross the street. Arlene turned me around to lower my wheelchair off the curb, pushed me across the street. And then once we reach the other side, she put her foot on the metal bar on the back of my chair, tipped me and the chair back and lifted my chair onto the sidewalk. As we did this, a few kids came toward us from the opposite direction. They were walking slowly down the sidewalk. As they passed, Arlene shifted my wheelchair to the side to make room for them. We didn't know them and didn't pay much attention engrossed as we were in our conversation. So I was surprised when one of the kids turned suddenly to me. He stood in front of me staring down at me in my wheelchair. “Are you sick?” he asked me loudly. I stared at him, not understanding. “What?” “Are you sick?” he repeated insistently. His voice boomed. I shook my head trying to clear the words away. I was still confused but couldn't speak. “Are you sick?” he asked, slowing the words down as if I were a toddler. The world went silent at the words reverberated in my head. I couldn't hear anything except those words. Are you sick? Sick, sick, sick, sick. I shrank down frozen with confusion, wanting to cover myself up with something, anything to hide from that question. The boys insistent eyes on me. “Are you sick,” he asked insistently almost shouting. Suddenly I became aware of doctor’s house behind me and my face turned a cringingly deep red. Does he think I'm going to the doctor? But he's not my doctor. I thought fiercely. I fought back tears. I couldn’t, wouldn't cry in front of everyone. I wasn't sick. It made no sense. I knew I wasn't. But then why was he asking me that I became uncertain of myself. Was I sick? I saw myself through his eyes and light around me, shifted. Shadows emerged in the corners of my mind. Previously submerged words, thoughts, and half heard, conversations tumbled into the glare of the spotlight. In a blinding flash, everything in my life in a perverse kind of sense. I couldn't go to this school. I couldn't go to that school. I couldn't do this. I couldn't do that. I couldn't walk up the stairs, I couldn't open doors. I couldn't even cross the street. I was different. But I'd always known that, it was then that. It was the world and how it saw me. The world thought I was sick. Sick people stayed in bed. They didn't go out to play or go to school. They weren't expected to go outside, to be a part of things, to be a part of the world. I wasn't expected to be a part of the world. Abruptly, I knew this to be true as if the knowledge had already existed for years throughout my entire body. I felt nauseatingly humiliated at the idea that everyone else had known this but me. Had they kept it from me? The embarrassment settled in as a cold ball deep in my stomach. I could feel it spreading into my limbs. Was it's sunny or cloudy. I don't know. I remember Arlene was pushing me. We were going to the store to buy candy and we were chatting. And I was a butterfly becoming a caterpillar.
KM:
That's Judith Heumann, reading from “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist”. Judith is coming to the University of Kansas as a featured speaker for ADA 30, nothing without us. October 28th, 29th. Judy that excerpt is just heartbreaking.
JH:
I think it's one that I was really glad to tell because it still is something that happens today. I believe because of the lack of inclusion, integration into society, disabled people with various types of disabilities are not seen on TV, we’re not typically seen in children's books, in movies. And when we are frequently getting a little better, but frequently were seen not as equal people within the community. And were seen as tragic figures, people who wish to commit suicide and do commit suicide. And the stories frequently, don't really reflect who we are as a people. And so one of the reasons I wanted this book to be as authentic as possible was so that other people that were experiencing the same or similar things in their lives would be able to relate. And that would also help the general public to understand that while this part of the book is talking about the 1950’s, in the 21st century these stories are still too true.
KM:
One of the ironies of this story is that in the fight for disability rights, because so much of the world has been inaccessible, people with disabilities were often unseen and kind of out of sight, out of mind.
JH:
Yeah, and I think partly it was because of accessibility. But honestly, I don't think that was exclusively the reason. I think it was in part, as my story says, in 1975 when a law called the education for All Handicapped Children Act was passed, now called the Individuals with Disabilities Education Act. At that point, the government acknowledged there were at least 1 million disabled children out of school. And then many, many others who were in school at that point were still not in regular classes. Many of them were in segregated schools and many others were in segregated classes like the ones I went to. So, and then we had telethons, the muscular dystrophy telethon…
KM:
Jerry Lewis.
JH:
Jerry Lewis, and the UCP United Cerebral Palsy telethon. And both of those telethons objectives were to raise money for medical research and to buy technology and other types of things that people needed and wasn't being provided by health insurance. But these telethons really preyed on people's fears. Fear of acquiring a disability. And that's what the fundraising was about. Give money not only to help these poor, crippled kids, but also give money so that hopefully your kids won't get this. And so for those of us who had disabilities, and who just saw it as a normal part of our lives, we knew that these telethons really had a supporting role in continuing to demonstrate that we should not be seen as equal members of our communities. But the truth of the matter is, that's what it was about. If health insurance would have been providing OT, PT, wheelchairs, crutches, other types of things like that, you wouldn't have needed to go to the general public to plead for money, to buy things that, you know, these organizations. I'm not saying that the organizations were bad organizations. I think in many cases they were and are today still providing some important services for people. And many of these organizations now have really become more advocacy organizations. I think there are a number of very important aspects to the disability rights movement emerging and becoming stronger through today. And that is that the disability community, when we began to organize on college campuses and get disabled student services offices, created, and started community organizations like disabled in action and other local groups, our mantra was, we are a civil rights, human rights movement. And we use at that time the term civil rights because that was what was going on. You know, the advancement of the civil rights movement. And while the Civil Rights Movement itself did not embrace disabled people as a part of that movement, we were embracing what they were doing, as I've said. And so we started calling, like in the seventies, the independent living Civil Rights Movement. Independent living phrase came about because in the 1970’s, there was a community based group started in Berkeley called the center for independent living, which was really focusing on disabled individuals, working on changing laws and policies in our communities, and also empowerment of disabled people. So turning this into a social model, civil and human rights model. And I think that really over time, decades, has resulted in other groups like March of Dimes and UCP and muscular dystrophy and many others recognizing that they really had to be addressing issues of discrimination. That's another issue Kaye, you know that the word discrimination was not used that frequently at that point. It was things like, oh, people didn't mean it, they didn't understand. And those were terms that were not being accepted in other rights-based movements. Civil rights movement, the women's movement, the anti-war movement, the movement for older people, which at that point is being called the Gray Panther Movement. Discrimination was a word that was being used in those communities way before we started using the word discrimination on a regular basis. In the area of disability.
KM:
I'm visiting with Judith Heumann. She's an advocate for the rights of people with disabilities. Coauthor of “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist” and a featured speaker at ADA 30, not without us at the University of Kansas on October 28th, 29th. I'm glad you brought up the issue of discrimination in employment because it was your own discrimination in employment, your desire to be a teacher, that took you from being, I guess what I would describe as just a very determined young woman and turned you into a fighter.
JH:
Well, the story is that I wanted to be a teacher. I actually don't know where that came from, except I was the first one in my family to go to college. And my cousins, who are older than I, those who went to college, did study to become teachers. So I was saying that there was a baby boom, people are becoming teachers. I hadn't had a good education, which I think definitely also influenced me. Anyway, I decided I wanted to be a teacher. And some of those students who are older than me in the class said to me, the agency that was going to pay for me to go to college, the department of rehabilitation, they said, don't tell them you want to be a teacher because you're going to have to demonstrate that there are teachers who are using wheelchairs before they'll pay for you to do that. So tell them you want to be something else. So basically, I had called the American Civil Liberties Union when I was a freshman or a sophomore in college, said that I was going to be studying to be a teacher, minor in education, and that I was afraid that I was going to be denied my job. And they said, well, just go ahead, take your classes. If something happened to let us know. So fast forward to when I graduated, I had to take a written and oral and a medical exam. That's what New York City required at that time. And but there were no laws, no 504, no ADA. So all of the exams were given in completely inaccessible buildings. My friends helped me in and out of those buildings. I passed the written exam, I passed the oral exam and I was failed on the medical exam. I had a woman who, I don't even know how she had become a doctor, really, based on my experiences with her. But she was very verbally abusive. And at the end of the day, after having to visit her two times, the written reason why I was denied my job was paralysis of both lower extremities, sequela of Poliomyelitis. And so I wasn't on the one hand surprised because that's after all, what I thought was going to happen. But when I got the letter, I was shocked and wasn't exactly sure what to do. So I call the ACLU and I said this is what happened and I'd like to come meet with them. And the person on the phone said that get back to me. And they got back to me and said there was no need to meet. They would not represent me because the denial of the job was not based on discrimination, but on for a medical reason. And I said that’s ridiculous, you know, of course, it's based on discrimination. I passed the requirements of what I needed to do to be a teacher, I had no health problem. And they, but they refused to see me. So then I really was contemplating, am I going to try to file a lawsuit? And it was really not a simple thing for me to decide that I wanted to do. And quite frankly, I was still, you know, ruminating over it. When someone that I knew at Long Island university was studying journalism and he disabled guy. And he reached out to a reporter at The New York Times who wrote a story on my being denied my license and laid it out basically saying, this was late 1969,70, that there was a shortage of teachers. And this wasn't right. And then the next day, the New York Times had an editorial which supported my getting my teaching license. And then I got a call from an attorney named Roy Lucas who later on argued before the Supreme Court. It was one of the lawyers in Roe versus Wade. And he called me to interview me about a book he was writing on civil rights and he hadn't looked at disability until he'd read this story in the New York Times. And while he was interviewing me for the book, I was interviewing him and at the and asked him if he would be willing to represent me. And he said yes. Then an attorney who was a customer in my father and uncle’s butcher store, also said that he would represent me. So I had two good pro bono attorneys who represented me. Our hearing was before a judge whose name was Constance Baker Motley, the first African American woman to serve on the federal bench. And so she basically told the Board of Ed that she encouraged them to do another medical interview. And so they did and was with a different doctor who basically apologized. And then I got my license. I had difficulty getting a job because so many of the schools were inaccessible. And I finally got a job teaching in the same school that I had gone to when I went to school.
KM:
I'm visiting with Judith Heumann. She's a lifelong advocate for people with disabilities, coauthor of “Becoming Heumann”, along with Kristen Joiner, and the featured speaker at the University of Kansas, ADA 30, nothing without us. October 28th, 29th. My conversation with Judith Heumann will continue right after this.
Part 2:
KM:
Welcome back to KPR presents I’m Kaye McIntyre. Today I'm visiting with Judith Heumann. She's a lifelong advocate for rights for people with disabilities, coauthor of “Becoming Heumann,” along with Kristen Joiner, and the featured speaker as the University of Kansas, marks the 30th anniversary of the Americans with Disabilities Act. ADA 30, Nothing without us will take place October 28th, 29th. You can find out more about that at Accessibility.ku.edu. Judith, I want to jump forward in your story a few years to when you are, you've left your family. You've headed to Berkeley and to graduate school. And I want to pick up your story in a fight for Section 504. Take us to April 1977. And the fight for the first federal civil rights protection for people with disabilities. How did that demonstration turn into a sit in and occupation of the Federal Building and the offices of the Department of Health, Education, and Welfare, that would last 26 days.
JH:
Yeah. I'm wondering would you like, there is a section in the book that I'd like to read that will give people a flavor.
KM:
Absolutely.
JH:
Okay, so as Kaye was saying, I think the way to picture this is we were in a plaza. The Health, Education and Welfare building was in a plaza. So we have a license to have a demonstration and we had a rally and a demonstration outside of the building. And we had also had a committee that was established, the Committee to save 504, as I recall. And this committee had gone and met with people within the Health, Education and Welfare building because we wanted to have a meeting with the regional director whose name was Joe Maldonado. So I'm going to read now. Joe Maldonado was a smallish man with the head of graying curly hair. When we entered the room, he stood up and awkwardly motion for us to sit, seeming not to process that many of us already were sitting. What can I do for you? He was clearly shocked at the size of the crowd. We're here to ask about the status of the enabling regulations for section 504 of the Rehabilitation Act. I spoke loudly. Maldonado, leaned back uneasily in his chair with a guarded look, his light colored suit was tied across his shoulders. A white polka dot, tie resting on his chest. Behind me, more demonstrators pack themselves into the office. The room hushed with attention. What is section 504? He asked. I paused, surprised. What? Was he serious? Section 504 of title five of the 1973 Rehabilitation Act prohibited discrimination against people with disabilities in institutions and programs receiving money from the federal government. HEW is responsible for finalizing the enabling regulations for it. Do you know anything at all about what is happening with these regulations in Washington? I hoped my voice was echoing down the hall to the rest of the protesters. I'm sorry. I don't know anything about section 504 or about what is happening with these regulations, Maldonado again said, turning red. Several worry wrinkles had appeared in his forehead. Can we please speak with the staff on your team who work on 504 I asked. Maldonado, looked displeased. I'm telling you we don't have any information for you. I understand I said but we'd like to speak with your staff, please. For a minute. Maldonado looked like he was going to refuse. Then he walked out and came back a moment later with 2 HEW employees. I asked them about the regulations. They looked utterly blank. I explained again, exasperation slipped into my voice. Joe Quinn, stood behind me interpreting in sign language. The entire floor listened, but it was true. Neither Maldonado nor his staff had any clue what I was talking about. Hot fury consumed my body. This might just be a job to Maldonado, but his job affected people, every single person in his office, and millions more. Did he not understand that? With an icy calm, I bombarded Maldonado with question after question, asking why they were watering down the regulations, what changes were being proposed, why the Department wasn't involving the community in the changes. When were the regulations coming out. Maldonado looked like he was trying to disappear under his desk. I refused to feel sorry for him. I leaned forward, my heart pounded. Now, do it now I thought. I look straight into Maldonado’s eyes. 504 is critical for our lives. I said vehemently, authoritatively. Behind me, I felt the crowd hold its breath. We're not leaving until we get assurances. The words came from some wellspring within me, a sense of absolute certainty spread throughout my body. You don't understand, you don't care. The crowd chanted behind me. Maldonado looked at us. Perhaps he looked at us and saw a roomful of people he could dismiss if he stared down long enough. Then he got up and walked out of the office. Kitty and I looked at each other. I leaned over to Kitty and whispered, How did I do? I always wanted to get Kitty’s thoughts. Feeling my emotions as strongly as I did in these moments, it almost felt like an out-of-body experience. Like I wasn't entirely sure of what had happened. “You made minced meat out of him,” Kitty laughed. I later learned that while we were with Maldonado, three female HEW employees been walking around offering protesters in the lobby cookies and punch. They prepared for our meeting like we were on some kind of field-trip. Evidently, they had under catered.
KM:
That's Judith Heumann reading from “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist”, co-written with Kristen joiner. Judy will be coming to the University of Kansas on October 28th, 29th, virtually as part of ADA 30. Nothing without us marking the 30th anniversary of the Americans with Disabilities Act. Can I have you read the part of your book where you're part of the delegation that's gone to Washington DC. And after several frustrating days, you stormed the Department of Health, environment and Health Education and Welfare.
JH:
Yeah. So let me just quickly set the scene. The machinists union had volunteered and they had a couple of people who had come with us from San Francisco to DC and they had rented a big U-haul van that that was driving us around. So you had this mix of people, deaf, blind, physically disabled. And we were going to have a demonstration outside of Health Education and Welfare building. I sat in my wheelchair thinking it was getting warm in DC. I wiped my forehead. I was sweaty. I smell terrible and my hair was greasy. I was angry. I just couldn't believe Califano was still ignoring us. What the heck did we have to do? This had to end now. I looked around the church. Let's go try and meet with Califano I said to everyone who was awake. Ten of us loaded in the truck and drove to HEW. The front of the building was glass doors, which was blocked by six tough looking guards with billy clubs. We rolled up to the door. We're about to enter when a guard intercepted us. Sorry maam, he said, you can't enter here. We're here to meet with Secretary Califano, I told them calmly. I was certain he must be confused. There was no way that they could be blocking everyday citizens from entering the building. At that time security did not exist in the way it does now. Sorry, ma'am. He repeated, I can't let you in. We’re citizens I told him with irritation. We have the right to meet secretary Califano. Can I speak with your manager? Sorry, ma'am. He repeated in the exact same tone the third time. I can't let you do that. Gradually it dawned on me. They were refusing to allow us in, not everyone. Us. They must have been under specific orders to watch out for people in wheelchairs trying to get into the building. I felt like I'd been slapped across the face, my jaw tightened. How many times had I been blocked from going somewhere told I couldn't get in. Told no, not you. Buses, planes, schools, restaurants, theaters, offices, friends, houses flashed through my mind. I was sick of being blocked. I didn't care if it was a guard, a bus driver, a pilot, a principal, a manager, or a step. It was all the same. They were all the same. I looked up at the guard, fury in my eyes. I turned around and backed up. Then I drove my chair directly toward the building. The guards jumped to the side and watched me frozen in total disbelief as I smashed into the door. The others followed me in their chairs. Over and over again. We turned around, smash, smash, smash. We slammed into the doors. The guards came alive, armed and in uniform. They started holding our chairs.
KM:
That's Judy Heumann reading from “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist.” She's the featured speaker October 28th, 29th as the University of Kansas marks the 30th anniversary of the ADA, the Americans with Disabilities Act. Judy, section 504 became law in 1972. It took until 1990 for Congress to pass the Americans with Disabilities Act. Jump forward to 1990 and talk about what happened between ‘72 and ‘90 to make that happen.
JH:
So between ‘73 and 1990, as I've been saying, we saw the development of a disability rights movement. And it was becoming a cross disability rights movement, which was very important, was important because many different groups were fighting for legislation that would address discrimination. But it was essential that we were able to come together and argue with the Congress and educate the Congress. To recognize that we needed to be able to not only have a law that made it illegal to discriminate if people were getting funding from the federal government. But that we also needed protection from the private sector. Because remember at that point, shopping malls were being built, movie theaters, restaurants, all kinds of businesses that were nongovernmental organizations. And it was not illegal to build things that weren't accessible, to discriminate in hiring of a disabled person unless there was a specific that a state might have. And a number of states like California, New York, Illinois, and others, Massachusetts, in fact, were passing pieces of legislation. But we needed to show the Congress that we needed a bill which would be more on the lines of the Civil Rights Act of 1964, making it illegal to discriminate against disabled people in the public and private sectors. And so really, it took a lot of organizing. And in the 1980’s, a man came on the scene. His name was Justin Dart. Justin Dart’s, father, was friends with Ronald Reagan and Justin had polio himself and had been out of the country for a number of years. He also actually had been denied at Texas a job as a teacher because of his polio. But Justin overtime began to recognize what was going on, the kind of discrimination that disabled people were facing in the United States as well as in other countries. And he was appointed to a job by Reagan in a federal agency. And he also became a member of the National Council on Disability. The National Council on Disability was very important quasi governmental group at that time. It still exists today. Are there Executive Director was a gentleman named Lex Frieden, who is a quadriplegic, now lives in Texas. And he and Justin and others really began to speak to disabled people in the United States, to talk about what was it that we needed to do in order to be able to move beyond 504 and other laws. And so ADA was being developed for about seven or eight years. And it was a it was different than 504. It was different than 504 because it covered the private sector. And it was different than 504 because 504 was pretty much a sleeper. I mean, it was put in legislation. There weren't hearings. And so there wasn't the same opposition. And what we had to do in the ‘80s until the law was finally signed in 1990 was to be able to organize within the disability community around the United States. Justin Dart was one of the leaders, Lex Frieden. There also was a woman named Pat Wright who had been involved with the 504 demonstrations and later went to work with a group called the Disability Rights Education and Defense Fund. She was in Washington and she basically was one of the brilliant people behind organizing the work and working with the Senate and the House. So it was like a huge effort. There were hearings that were held on this. Joint hearings on the senate and house side. There were all kinds of demonstrations. And again, you can see some of this very visibly in, in Crip Camp. And so I would say that the ADA really was the next step of the, of the growth and development of our movement. At the same time. Part of that growth and development really necessitated the ability to become knowledgeable, sophisticated, how to work with senators and congressmen, congressmen, Coelho, Senator Kennedy, Senator Harken many, many other people who played a very pivotal roles that would never have, if they didn't get significantly involved, the legislation wouldn't have gone anywhere. Congressman Coelho has epilepsy. Senator Kennedy had a sister with a disability, a son with a disability, a brother who had significant back problem. And Senator Harken whose brother was deaf. So all of these people really played major roles. And the Reagan administration had appointed a couple of disabled people in one of the agencies who also were very involved. So it was kind of a growth, an acknowledgement that the stories disabled people were telling at the local level that they could tell to their congressional people and their senators demonstrating that like your father, that this was going on all around the country and that now people were speaking up about it. And that we were demanding that the congress do what needed to be done to protect today what is 61 million disabled people in the United States.
KM:
Judy, because this-if Kansas Public Radio, I have to ask you about the role of Senator Bob Dole.
JH:
Senator Bob Dole of course was and is still very, very critical. Bob Dole has been a champion of disability rights ever since he assumed position at the federal level. And I actually had the privilege of receiving an award from the senator. In 1990 an award had been created in his name. And I was the first recipient of that award. And then the senator later became a very strong advocate after he left the Senate. For something called the Convention on the Rights of Persons with Disabilities. And he valiantly fought to try to get the Senate to recommend that the President at that time Obama ratify, ratify the CRPD. And I have to say it was in my view, a tremendous insult to him when the majority of members of his party refused to support him in voting to recommend that the Convention on the Rights of Persons with Disabilities be ratified. And he's still today is working on that. And hopefully we will in the next few months be able to look at the possibility of a Senate that in fact will vote to recommend ratification of the CRPD. And a lot of that will be given to the credit of Senator Dole.
KM:
Judy, I think you may have just answered my next question for me, but when the Americans with Disabilities Act passed in 1990 and was signed into law, was there a sense that we're done?
JH:
Never. I think first of all, there was a sense of accomplishment, justified accomplishment. But even just looking at ADA itself, ADA is an anti-discrimination law and it doesn't cover things like health care. It doesn't cover things like personal assistance services. It doesn't cover anything like the Convention on the Rights of Persons with Disabilities. So and I think one of the very important aspects once the ADA was signed was implementation. Because like any law, you can have a great law. But if it isn't implemented, it doesn't mean that much. And so I think what was important both with 504 and with the ADA, that after 504 regs were signed and after the ADA was signed into law. In both occasions, the federal government put money forward to allow people to understand disabled people what the law did and didn't too. And allowed the business community and transit agencies and others to understand what the law would obligate them to do and not obligate them to do. So. That was one thing, getting the law implemented, which is still a work in progress. The ADA is obviously a very important law in the United States. But when you look at the unemployment rate for disabled people today, the unemployment rate is like 60, 70% for disabled individuals, and this is pre-Covid. And so you can tell that there are many issues that are still plaguing disabled people getting jobs. But I really want to say that some of the other essential issues are not just disability issues. So things like the Affordable Care Act are very important. People need quality health care. And for many disabled people, it also includes things like durable medical equipment, crutches, braces, canes, walkers, hearing aids, glasses, still which is not covered in many, many cases. But where we are today is implementation of the ADA implementation of 504, implementation of many other laws. As well as needing new legislation. Legislation that will enable people to get the kinds of financial supports that they need in order that they can go to work and not be adversely affected financially. But that's another whole discussion. And Kansas, Kaye, as you know, had some really great advocacy organizations that can really talk about some of the very important work that disabled people have been doing in Kansas for many, many years now. And the vision that people have for what yet is needed in new legislation.
KM:
I'm visiting with Judith Heumann. She's a lifelong advocate and activist for disability rights. She's speaking at KU virtually on October 28th, 29th as part of ADA at 30. Judy, since then, you've served as the World Bank's first advisor on Disability and Development. You served in the Obama administration as the Special Advisor on international disability rights. What does the fight for disability rights look like in other countries?
JH:
I would say we've seen also in many countries the evolution and development of disability rights movements. In Africa, across Africa, in Latin America, in Asia. There's an organization called the International Disability Alliance, AIDA for short. AIDA represents 13 international disability rights organizations and regional groups. So there is definitely a worldwide movement. Now, I, as I've been saying, in the United States, our movement is still evolving. Our movement is evolving both to be more representative cross disability, and to ensure that racial diversity, sexual orientation, etc, are moving in more prominent positions within the movement. Likewise, in other countries, movements are evolving. You know, they're nowhere near where other movements are. In part because disability rights organizations have not received a lot of funding. I mean, rights-based groups, as a rule, have difficulty getting funding. But disability rights groups definitely have difficulty getting funding. And while things are improving a little bit here in the US, private philanthropy, I did, I was a senior fellow at the Ford Foundation. Darren Walker, who is the president of the Ford Foundation in 2016 really started recognizing that he had not been looking at disability as an important part of the work that the Ford Foundation needed to do. If it was sincerely looking at issues of equity and justice. And so he has led within the Ford Foundation a very strong adjustment so that disability issues affecting disabled people from a rights-based perspective are being addressed more effectively. But he also had the vision to really want to be able to bring other foundations from around the United States together. And what's been set up is a President's Council, which has about 15 or 16 major foundations on it. That's co-chaired by the Robert Wood Johnson Foundation and the Ford Foundation. So, you know, I think we have to recognize that movements need support and that, you know, when changing from a medical model in the case of disability to a rights-based model there's many changes that are needing to go on. Disabled people feeling that we have a right to be able to go to school, to get a job, to live and be active and respected in our communities. And that we should no longer be hiding our disabilities. When people think about who are disabled people, they frequently think about people who are deaf or blind, or have Down syndrome or physical disabilities. But a significant number of disabled people have invisible disabilities, depression, anxiety, bipolar, lupus, on and on, cancer, significant back problems, blah, blah. Anything which limits one or more major life activities under 504 and the ADA can be considered a disability when looking at issues of discrimination. So our movements are evolving. Covid has had a very adverse effect on our communities. And I want to say something about covid. And that is disability communities in Kansas and around the United States and the world, Kansas has played a very important role in this, have really been fighting for people not living in nursing homes and not living in segregated living environments. And in order for that to happen, we need to have accessible housing, affordable housing, and personal assistance. Money which will enable people who, who are not wealthy of which must disabled people are not wealthy, to be able to get financial support to live in the community so that people who are helping us can get paid appropriate wages. My concern about covid beyond the disproportionate number of disabled people, seniors, we don't call them disabled, but they have disabilities or they wouldn't be living in nursing homes, and people in other congregate living programs. People with what others are calling underlying conditions, diabetes, hypertension, et cetera. Many of those individuals being black and brown people are dying at disproportionate rates. And what I worry about is that we are not going to look at how these situations could have been avoided. And one of the ways they could have been and could still today be addressed is by getting people out of these segregated living environments which are not safe to them or the people who are working with them. And we must pay attention to this. So, you know, for me, it's, it's gotta go beyond the disability rights movement. Non-disabled people need to understand that disability is not just affecting their family members, their mothers, their fathers, and others, but it will affect them in the future. And it's important that people recognize that they need to be looking at what we are saying. Because we're not just saying what needs to happen for ourselves. Obviously, it's very important. We don't want to wind up in these terrible places. And none of them are good even if the best intentions are there. So it really needs to be a movement. Just like people understand, they need health insurance. People should not be uninsured. People need to understand that it needs to include the ability to live in the community and an accessible community.
KM:
I've been visiting with Judith Heumann, she’s a lifelong advocate for the rights of people with disabilities, and coauthor of “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist.” My last question for you Judy is this: why unrepentant?
JH:
Because I’m proud of what I do. I have no regrets. We need to respect ourselves. We need to, you know, fight for our rights because they don't come otherwise. And so I'm unrepentant as we all need to be, you know, it's every life, every individual life has a right to be able to make the contributions that we're interested in making. And discrimination, bias, lack of exposure, able-ism, racism, homophobia, all of the isms should not be a reason for us not to be able to live our lives equally. And yeah, I have no regrets. I hope to live my life the way I have been until I die.
KM: I've been visiting with Judith Heumann. She’s, a lifelong advocate for the rights of people with disabilities and coauthor with Kristin Joyner of “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist.” She's also the featured speaker as KU marks the 30th anniversary of the Americans with Disabilities Act. It's ADA 30, nothing without us. October 28th and 29th. If you have a question for Judith Heumann, KU ADA Resource Center for Equity and Accessibility is taking your questions for Judy's visit to KU October 28th and 29th. Go to accessibility.ku.edu. Judy, this has been such a pleasure visiting with you today. Thank you so much for talking with us.
JH:
Thank you very much. It's been great. And watch the movie also on Netflix, Crip Camp.
KM:
Excellent advice. I'm Kaye McIntyre. KPR presents is a production of Kansas Public Radio at the University of Kansas.