She is a former senior fellow with the Ford Foundation and advisor to the world bank. She joins us tonight to discuss her life, work and new book, being human. She will be in conversation with our very good friend Pamela Edwards and abc news anchor of the morning addition. Duty and pam, the screen is yours. Andy, this new age of social distancing is great to see we can get it done. Duty, it was an honor to read your book. It is a running theme in the book, how often people tell you they should know they 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. In fact, thats where i want to start, to give people a perspective and i wanted you to compare and contrast what it was like when you are a young person pick you up in the book talk about your childhood in brooklyn. What it was like to be a person coming into the world then with a disability and what it is like now. The differences you see. Well, on one hand the difference is they are significant because when i had was born in brooklyn there was just the beginning of television and i think we really need to recognize the Important Role that television has played and we can discuss that as we go forward but there were no laws that protected the rights of disabled people. There werent many laws that protected the rights of other minority groups so at that point the disabled people were not protected wasnt as unusual but people are very much looking at this disability as a medical issue and looking at the issue of curing disabilities. They really it wasnt a lot of activity going on to look at discrimination as a component of what was happening to disabled people. So, over the beginning of my life my parents were both German Jewish refugees and they came over in the 30s and met in the 40s after my father went to the marines at the end of the war and they lost their parents, grandmother on either side of the relatives so when they got married it was they were looking to set up a family. I was born and then my mother was pregnant with my brother and when i was in 1949 she was eight months pregnant. My father had just started opening up a butcher store with his brothers so everything was thrown up in the air. To my parents credit while they didnt know any other families that had disabled children they had no idea what was about to happen separate from my having had polio but they really decided they would have me live my life like they wanted me prior to my birth. So my mother took me to school, i was denied the right to go to school because i couldnt walk and it said i was a fire hazard. I didnt finally go to school until i was nine years old and it was of segregated classes. In between the fourth grade i only had a teacher who came three times a week. Today we have laws on the books that make what happened to me than illegal. In 1975 there was an important law that came out in the area of education. In 1973 there was something called section 504. I encourage people to look at these [inaudible] it gives you additional information. Like today it is different in many ways, i would say, specifically because of all the antidiscrimination laws and affirmative action laws disabled people have more opportunities than they did for sure in the 40s and 50s and 60s. When looking at this cremation against any group and when we have lived in society that has discriminated against people based on their religion and on their race and on their disability it doesnt change that rapidly. And so i think what is been happening is if a immunity is not organizing more we become empowered amongst ourselves and we reach out to the general society basically saying we want to be able to be equal numbers in the community. There is a movement of disabled people which did not exist at that time the movement itself is moving away from the medical model and really looking at the social justice model. It is interesting to say that because i read your book and i watch [inaudible] on netflix and it talked about a place you mentioned in the book, [inaudible], which was the first place where honestly you got to be a person. You got to be a kid and you werent defined by ability or disability. It was a moment when all the kids were talking and the things they say that they want are just so basic and normal for everyday teenagers and everyday humans and it hit me when one person said i would like my privacy. Everyone had a teenager say get out of my room and i want my privacy but they want the ability to be bad and the ability to have a boyfriend or girlfriend and to be seen sexually and exist in the world and made me think about how we look at people with disabilities. Whether they are physical, mental, emotional or otherwise we are very quick to almost try to turn them into children and flatten them and make them simplistic in a way. It reminded me or taught me just like everyone else that there is a really rich and interior life and a person that wants to be heard and deserves to be heard. I would imagine thats at the heart of your arguments where we are no different than you are. Right. I think you shaved it very well. For me some of the issues are that infrequently its difficult to talk about that part of themselves. We typically grow up in families that are the only disabled person as opposed to a particular race or gender in your mother, grandmother, aunt and uncle, friends and in the area of disability i do not know any disabled people until i started going to segregated classes and i was nine years old. Then when i went to camp jenness those are times where both school and these other experiences where i could speak about the call of myself so i could talk about what i was beginning to feel as i got older and to articulate things in a way that children can. Why couldnt i get on a bus and why did people have to say have the same expectations and why did people stare at me and whatever it might have been an equally important i do not hear people talk to me or my friends about the future so as you grow older and certainly in Todays Society people are talking and saying what do you want to do when youre an they rarely talk to me and my friends but we did want to do something when we grew up and so it was a discussion that we would have and you know, the comment you made about treating people as children that i think is a very powerful statement because for me even today when we were able to [inaudible] it would not be uncommon to go to an airport and i would go to give a speech in another part of the worlds or whatever and people dont talk to me, they talk to the people and with who are there to assist to be they will say what does she want like that happens all the time and i would say in getting back to the earlier question about how things are Different Things are different and vary the same because the absence of disability in television and in advertising and in journalism and in media broadly continues to marginalize us. What we still find, although its improving, is that many disabled people do not want to identify, even if they have visible disability. Because of the stigma, because of how theyre treated. They dont necessarily want to hang out with other disabled people. But as we are doing more together we are learning the commonality of experiences and the differences of experiences. So now you know with the pandemic one of the big issues that being discussed has to do with africanamericans and latinos who are dying at a higher rate. And they talk about underlying conditions, which are diabetes, hypertension, obesity, all of these are disabilities. And so people are in some cases at greater risk, and in many cases they are not getting the services that they need along the way because they are poor or other reasons. But i do hope one of the outcomes of this tragedy is that we really are able to have more indepth discussions about why its so important that our disability community, which according to the federal government in the u. S. , numbers 96 million people. Wow. And according to the World Health Organization and the world bank, at least 15 of the population of the world, 1 billion people, have disabilities. My book is really trying to do a combination of things. One is, reflect me as i was growing up and how i experienced life as things move forward. But also i hope to really get people to start thinking more about giving have a disability that may be they know they have disability but they dont know how to discuss it . Do they have people in the family or friends, and one kind of a dialogue do we really need to be having to ensure that disability across our community 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 we are playing in fostering that. Its interesting because part of what people know is whats in the culture. Its whats talked about. Its what is taught. As an africanamerican, the Civil Rights Movement is clear to something i up learning about, and not just in the family but in pipe of a culture, in school. When you think about other movements, the gay rights movement, the movement, these are stories that even if youre not paying attention, if you dont care, you know the basic pinpoints of whats happened here. You point out in the book as crypt camp came out or other documentaries of people who you thought should be in the know we take you i had to idea and honestly until image of book i had no idea. Your fight was not a fight the lasted for weeks or four months. You lay out a fight that last for decades. That being the case why are we not aware of the fight around disability rights and civil rights the same way we are the other movements . Why do you think . I dont know. Theres the decision obviously not to teach in schools. Theres the decision not to talk about it as much and it feels as though whatever reason people do not put people in the Disability Group in that same protected class or concerned the class. Hulu has something on right now about mrs. America, going back to Phyllis Schlafly and the fight over the era. I cant think of the last time that ive seen on Major Television the story about disability rights. You point out when reducing the disabled they are the building or the tragic antihero. It are never the romantic lead, they are never the best person in the movie. Or if they are they dont have a disability. A few good to go coming home with jon john voight, undated myself, im 72. 72. This was in the 70s. He was a positive character playing a paraplegic. However, he doesnt really have a disability. And my left foot, all these movies with our positive messages, forrest gump, they are played by nondisabled people. Thats a whole nother issue. 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. I couldnt do it. They dont really know what it is, and you dont really know not only what it is that we are doing, but they dont really also think about themselves and the future. Reason i say that is, this is little bit of the discussion i had when i student the show, is he used the word ablebodied and i said no, no, i dont use thed ablebodied because i use the word nondisabled. Id use it for a couple of reasons. I dont like using the word able because it implies im not able. I dont want to have to use the word to tell some i have abilities because that should be something that they understand. I think like with the terminology of people using like the able, disabled or whatever it may be, it may be not intentional but i think the term we use like racist is ablest. Thats an issue. I also think as you are discussing, not seeing and learning about disability and the way disabled people are characterized, and infrequently even what are characterized, i think that also leads people who have questions, afraid of asking them. Things have gotten a little better in the following way. Going down the street, i use a motorized wheelchair. Children will frequently be curious, right . They havent seen one. In some cases they want to ask the question. We used to call it the potato chip issue. So a child wanted to ask your ya 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 here and for children i really want to engage them. First of all, when im going down the street and there are kids and a baby carriage, we are more on the same eye level. [laughing] i am definitely drawn to them because i watch their eyes, and a look at my wheels and little boys look at the wheels all the time for little girls not so much. But talking to them and giving the parents engaged, some of the parents are like totally there. They are kind of cool about it and they will kneel down and will discuss the wheelchair, point out where the batteries are, where the chair gets plugged in and all these others, and begin others are just like please, stop embarrassing me. Dont ask any more 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 of hearing or have physical disability or an invisible disability. People need to understand. Children and adults need to understand. And i think when one of the Biggest Issue is, people dont see themselves acquiring a disability. People break limbs all the time. Its a temporary disability. But as people get older, their site, their hearing, their ability to communicate, their ability to ambulate as independently as before, they may have other kinds of memory issues. We tend to look at marginalizing people. I mean, if you look at whats going on right now with the pandemic, both in the u. S. And around the world, some of the highest areas of death as result of people acquiring the virus are in these institutions. The question is why are people in the institution . People are in the institutions because their homes are not accessible. People buying homes that are not accessible. They dont want to buy homes that are accessible. We dont look at the need for personal assistance. Like i cant go to bed myself. I cant get up, cant get dressed, i 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. If people become invested in their future, not even in my future, but in your own future, what do you need to be comparing preparing for an event these berries things happen . Not in a negative way but in 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 you were in charge. I think thats really important. As long as you can be charged or you have a good system set up for other people you know who respect and could be helping those in many of the issues but i think ultimately people dont want to think about it. People are really afraid. And i think another thing that stood up to me that i didnt learn until watching this, you talk and book your parents being told he should put an institution. They said absolutely not. Thats not what we do with our daughter, but encrypt camp theres a moment when Geraldo Rivero goes to place called willowbrook. I dont think ive ever seen anything more upsetting and dehumanizing, barely any workers, disabled children, less naked, covered in their own feces, not being allowed to eat. No time to see figure just sort of a storehouse. It looked like something that Charles Dickens could not have imagined. The fact this existed in the last century and that it was allowed was shocking to me. So in pennsylvania there was an institution called [inaudible] i believe it was in the philadelphia area. It was very equivalent to willowbrook. These types of institutions, while their closing and most of the big institutions are close, one of the things you can also see happening now is people that are living in the Nursing Homes and other congregants Living Programs, some of them are quite large. Not as large as willowbrook, not in the thousands, but 20, 30, 40, 50 people. And not only are those programs that for the individual person, but theyre bad for the community. Because they continue to accentuate this image that disabled people need to be out of sight out of mind. And then people are not, they are not treated as people, as individuals. Now during the pandemic, as i said earlier, we were lookingt this issue of higher rates of death both among the People Living in these facilities and among the workers. The workers are also not treated appropriately. The right model is people need to be able to live in their own home that they were in, or any to be able to live in apartments and other places with one or two people. It shouldnt be this larger congregate Living Program which a really bad models. I visited willowbrook after Geraldo Rivera had been given the keys by two of the doctors at willowbrook. I went with a nine and a reporter. When we got there a nun. They would not let me in. They wanted me to sign a paper that if i got injured i would not sue them. And, of course, i would not sign any kind of a paper like that. It was a horrifying experience. When i worked in the state department, i was in mexico and i got some of the employees of the state department to come and visit an 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 disability. They had been doing reporting a conditions in mexico in many other countries. It was the first time that staff from the state department had ever gone in visited an institution like this. When we drove to the institution, personnel of urine was so overpowering even before we got onto the ground. And while people were not laying around naked like in willowbrook, there were one or two people who were. There was no activity going on, and you had many, many People Living there. But these models still exist in other countries, and people are afraid in this country that because of whats going on right now, instead of looking at movin