Wit, heumann served in bill Clintons Administration shaping disability policy in the department of education and was appointed by barack obama as the special adviser on disability rights for the state department. She is also a former senior fellow at the Ford Foundation and advisor to world bank. She joins us tonight to discuss her life, work, and new book, being human, an unprepen tent enemy interior of a disability rights activist. She will in conversation with tam la edwards. The science yours. Thank you very much. Thats wonderful. Andy, in the news age of social distancinged a great to see we can get it done and judy it was an honor truly to read your book, running theme in the book how often people tell you, people who should know, say i had no idea and im hopeful that people reading your book and joining in on the conversation tonight will be brought up to speed on what your fight has been about and all the changes you have made, and in fact thats where i wanted to start to give people a little bit of perspective. I wanted you to do a compare and contrast what it was like when you were a young person outcome outcome taunt but thunder childhood in brooklyn. What it was like to be a person coming into the world with a disable and what its like now. The differences that you see. Guest well, on the one hand the differences are very, very significant because when i had polio in 1949 in brooklyn, there was just the beginning of television, and i think we really need to recognize the Important Role that television played and we can get into discussing this as we good forward. There were no laws protected the right of disabled people there werent many laud that respected the lights of other Minority Group sod at that point disabled people not being protect it wasnt as unusual, but people are really very much looking at disability as a medical issue and looking at the issue of curing disability. So, they really werent a lot of activity going on to look at discrimination as a component of what was happening to disabled people, and so over the beginning of my life, my parents were both German Jewish refugees, came over in the 30s, melt in the 40s after my father left the marines at the end of the war, and they lost their parents, grandmother on the ear side and other relatives. So when they got married, it was the were looking to set up a family and i was born, then my mother was pregnant with my brother, and when i had polio in 1949, she was eight months pregnant. My father just started opening up a butcher store with his brother. So everything was kind of thrown up in the air. And i think to my parents credit, while they didnt know any other families with disabled children they had no idea what was about to happen separate from my having had polio. But they really decided they were going to have me live my life like they wanted me to prior to my birth without having a disability. So my mother took me to school. Was denied the right to go to school because i couldnt back and the principal said i was a fire hazard. Didnt actually finally get to go to school until i was nine years old, and then it was segregated classes in between fourth grid he only had a two times a week for a total of two and a half hours a week. So, today, we have laws on the books that make what would happened to me then illegal. So in 1975 there was an important law that came out in the area of education, in 1973 there was something called section 504. I really encourage people to look at this film, crips camp that gives you additional information. Life today is different in many ways. I would say its specifically because of all the antidiscrimination laws and affirmative action laws, disabled people have more opportunities than they did for sure in the 40s 50,s and 60, but when looking at the discrimination against any group, when we lived in society that have discriminated against people based on their religion, on their race, on their disability, i it doesnt change that rapidly, and so i think what has been happening is that the Disability Community has been organizing more, we have been becoming empowered amongst ourselves. We have been reaching out into the general society basically saying, we want to be able to be equal members in the community. So theres a much a movement of he disabled people which didnt happen at that time and me mom itself is moving away from the medical model and really looking at the social justice and rights based model. Host its something you say that because i read your book and also watched crip camp on netflix and talk but a mails you mentioned, the first place where honestly you just got to be a person, just get to be a kid. Werent defined by ability or disability, and theres a moment when all of the kids are talking and the things they say they want are just so basic and normal for everyday teenagers and everyday humans, and really hit me when one person said i just would like my privacy. Everybody has had a teenager say get out of my room inwant my privacy. This ability to be bad. The ability to have a boyfriendgirlfriend to be seen sexually, to exist in a world and made my think about how we look at people with disabilities. Whether they are physical, mental, emotional, or otherwise, were very quick to almost try to turn them into children, to flatten them to make them simplistic in a way, and it sort of reminds me taught me just like everybody else, there is a really rich interior life, theres a personal who wants to be heard, and deserves to be heard and i imagine thats at the heart of your argument. Were no different than you are. Guest right. And i think you shaped it very well, and for me, i think some of the issues are that it is frequently difficult for disabled people to really talk but that part of them. Themselves go up in families and we are the only disabled person as opposed to families of a particular race or gender. You have a mother, grandmother, aunt and uncle, friends in the area of disable i didnt know any disabled people until i started going to segregated kansass and then i went to the camps those were times where both school and these other experiences where i could speak about the whole of myself. I could talk but what i was beginning to feel also i got older and could articulate things in a way that children cant. I would couldnt i get on a bus . Why couldnt people have the same expectations . Why do people stare at me . Which equally important, i depend hear people talking to me or my friends about a future. So at you are growing older and certainfully in todays society, people are talking about, what do you want to be when you grow up . People didnt really talk to me and my friend what did we want to be when he grew up but we did want to be michigan when be grew up. Those are discussions we would have, and comment you made about treating disabled people as children, that i think is a very powerful statement because for me, even today, when we were able to go out it would not be uncommon guy to an airport and going to go give a speech in another part of the country or the world or whatever, and people dont talk to me. They talk to the people that im with. Who are there to assister me. Theyll say what does she want . Like that happens all the time. And i would say in getting back to early er question, things are very different and theyre very the same, because the absence of disability in television, in advertising, in journalism, in media broadly, continues to marginalize us, and you also were referring to the breadth of who we are as disabled people and thats a very important issue. Its not just those who are physical disabilities. Its those of us with depression or anxiety or bipolar or diabetes or cancer or epilepsy or any one of a number of hundreds of disabilities, and i think what we still find, although its improving, is that many disabled people do not want to identify. Even if they have a visible disability because of the stick marks how theyre treated. They dont necessarily want to hang out with other disabled people. But as we are doing more together, were learning both about the commonality of experiences and the differences of experiences. Now with the pandemic, one of the big issues being discussed has to do with africanamericans and latinos who are dying at higher rates, and they talk about underlying conditions, which are diabetes, hypertension, obesity. All of these of disables and people are in some cases at greater risk and many cases theyre not getting the services they need along the way because theyre poor or other reasons. But i do hope that one of the outcomes of this tragedy is that we really are able to have more in depth discussions about why it is so important that our Disability Community, which according to the federal government of the u. S. , numbers 56 million people. Guest according to World Health Organization and the world bank, 15 of the population of the world, 1 billion people, have disabilities. So, my book is really trying to do a combination of things. One is reflect me also i was growing up, and how i experienced life as things moved forward, but also i hope, like riff crip cam, to get people to start thinking more about do they have a disability that maybe they know they have a disable but they dont know how to discuss it . Do they have people in their family or friends, and what kind of a dialogue do we reallied in to be having to ensure that disability across our communities is something that im learning more about and looking at what we can do to really help break down the barriers and look at what discrimination is and what role were playing in fostering that. Its interesting because part of what people know is what is in the culture, what its talked about, what is taught, as an africanamerican, the Civil Rights Movement is clearly something i grew up learning about and not just in the family but in Popular Culture in school, and when you think about other movements, gay rights movement, womens movement, stories even if youre not paying attention and dont care you though the basic pinpoints what happened here and you point out in the book at that time as crip camp came out or other document arrives people who you thought be in the know would say to you, i had no idea, and honestly jeudy until i read your book i had no idea. Your fight was not a fight that lasted for weeks or months. You lay our fighted that lasted for decade. That being the case why are we not aware of the fight around disability rights and civil rights the same we are other movements. Why do you think . Host i dont know. Theres the decision obviously not to teach it in school. Theres the decision not to talk about it as much it and feels as though for whatever reason, people do not put people in the Disability Group in that same protected class or concerned class. Hulu has something but mrs. America and Phyllis Schlafly and the fight of the ea. I cant see the last tomorrow i saw a story about disable rights and you point out when we see the disabled theyre the veilline or the tragic antihero, never the romantic lead, never the best person in the movie. Guest or they dont have a disability. Years ago combing home with john voigt, im dating myself. Im 72. Thisness the 70s. He was a positive character playing a paraplegic, however he doesnt really have a disability. And my left foot, all these movie where are there positive messages, forrest gump, played by nondisaged people. He thats another whole issue. Think one of the basic issues around why not, why are we not seeing more is a combination. One is, i think people are afraid of acquiring a disability themselves. They look at people like myself, or whomever, and they say i dont know how they do it. Couldnt do it. They dont really know what it is, and they dont really know not only what it is that we are doing but they really also think about themselves and their futures, and the reason i say that, this is a little bit of a discussion i had when i was doing the show, is when he used the word able bodied and i said, no, i dont use the wore able bodied becauseeye the word nondisabled and i use it for a couple of reasons i dont like can use the word able because it implies im not able. And i dont want to have to use the word to tell somebody have abilities because that should be something that they understand. So, i think like with our with the terminology, people using like the able, disabled or whatever it may be, it may be not intentional but its the tomorrow term we use is disabled. Thats an issue. And i think as you were discussing not seeing and learning about disability and the way disabled people are characterized, and infrequently even when we are characterized issue think that also leaves people who have questions afraid of asking them. So, things have gotten a little better in the following way. Going down the street, i use a motorized wheelchair, so children will frequently be curious. They have not seen one. And so in some cases, they want to ask a question. And we used to call it the potato chip issue. So, a child wanted to ask you a question. The parents would pull the child away, distract them, so they didnt ask the question. For me and this is not true of everybody some people do not like to be asked what your disability. For me i really dont mind if somebody asks, and for children, i really want to engage them. First of all when im going down the streets and i theyre kids in a baby carriage were more on the same eye level. [laughing] guest im drawn to them because i watch their eyes. And they look at my wheels and little boys look at the wheels all the time, little girls not so much. But talking to them and getting the parents engaged, some of the parent are like totally there theyre kind of cool about it and theyll kneel down and well discuss the while chair and point out where the batteries and are where the chair is plugged in and all these others and again others that just like, please stop embarrassing me, dont ask anymore questions. You can just see it. But i think the absence means people have logical questions. Were not the majority of people in society. Whether were blind or deaf or hard or hearing of eave a physical disable or invisible disability. People need to understand. Children and adults need to understand, and i think really one of the biggest issues is, people dont see themselves acquiring a disability. And people break limbs all the time. And its a temporary disability. As people get older, their sight, their hearing, their able to communicate, their able to ambulate as independently as before, may have memory issues, and we tend to look at marginalizing people. I mean if you look at what is going on right now with the pandemic, both in the u. S. And around the world, some of the highest areas of death as a result of people acquiring the virus are in these institutions. The question is why are people in the institutions . Panel are in the institutions because their homes are not acceptable, people buy homed that are not acceptable, they dont want to behold that are acceptable weapon dont look at the need for personal assistance, likes i have i cant good to bed myself. Cant get up. I cant get dressed, cant go to the bathroom. I cant do all these things but when im able to have someone who can help me, i can do all those things. So, if people become invested in their future, not even in my future, but in your own future, what do you need to be preparing for . In the event these various things happen . Not a negative way but a positive way. What does one need to do in order to stay in their community . And really be willing to look at some of the more difficult questions so that youre in charge. Thats really important. As long as you can be in charge or you have systems set up for other people you know and respect can be helping issue think those are many of the issues but i think ultimately, people that want to think about it, people are really afraid. And i think host another thing, judy, that stood out to me i didnt learn until watching crip camp, you talk but the parents about told you should put her into an institution and they said absolutely not. We fled a place pete putting anymore institutions inch crip camp theres a moment when Geraldo Rivera bees to a place called will row brook and ive never seen anything more upsetting dehumanizing barely any workers disabled children, left naked, covered in their own feces, not being allowed to no time to feed them, just a storehouse it and looked like something that Charles Dickens could not have imagined and the fact this existed in the last century and it was allowed was shocking to me. Guest so, in pennsylvania, there was an institution called penter. And i believe it was in the philadelphia area. And it was very ewith lint to willow brook. These types of institutions, while theyre closing and most over thosing institutions are closed, one thing you can also see happening now is people that are living in the Nursing Homes and other congregate living programs, some of them are quite large, not as large as willow brook. Not in the thousands but 20, 30, 40, 50 people, and not only are those programs bad for the individual person, but theyre bad for the community because they continue to perpetuate this image that the disabled people need to be out of sight, out of mind, and then people are not theyre not treated as people, as individuals. And now during the pandemic, as i said earlier, were looking at this issue of higher rates of death, both among the People Living in these facilities and among the worked. The workers are also not treated appropriately. The right model is people need to be able to either police in their own home that either live in their own home they live in or live in an apartments and other places with one or two people and it shouldnt be these larger congregate living programs which are really bad models. I visited willow brook after Geraldo Rivera had been given the key by two of the doctors a willow brook and i went with a nun and i a reporter and when we got there, a friend of mine was one of the doctors who had broken open the story and when we got there to get a pass, they were not going to let me in. They wanted me to find sign a paper that if i got injured, i would not sue them. Of course i would not sign any kind of a paper like that, and it was a horrifying experience. When i worked for the state department, i was in mexico and i got some of the employees of the state department to come and visit and institution with me in mexico city, because theres an Organization Called disability rights international, and they do work around the world on issues affecting people with Mental Health and psychosocial and intellectual disab