Pamela edwardss, anchor of 6 abc action news morning edition. The screen is yours. Thats wonderful. Andy, in this new age of social distancing its great we can get it done and judy an honor to read your back. A 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 a perspective. I wanted you to do a compare and contrast what it was like when you were a young person. You opened the back talk about your childhood in brooklyn. What isth it wag like to be a person come thing into world with a disability and what its like now, the differences you see. Guest well, on the one hadnt 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 has made and we get into discussing that as we go forward. There will no laws that protected the rights of to disabled people. There way werent many rights respecting the lights of other minorities so disabled people not being producted wasnt unusual but people were very much looking at disability as a medical issue and looking at the issue of curing disability. So, they really wasnt 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 beth German Jewish refugees, they came over in the 30s, met met in the 40s after my father left the marines at the end of the war, and they lost their parents, grandmother on either side and other relatives, so when they got married, it was they 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 busher store with his butcher store with his brother so everything was 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. So my mother took me to school. Was denied the right to go to school because i couldnt walk and at the principal said i was a fire hazard. Didnt actually finally get to go to school until i was nine years old and then wait segregated classes in between the first anding for grade. Only had a teacher the 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 the 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, crip camp, on netflix and gives you additional information. Like today, its 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 60s, but when looking at discrimination against any group, when we lived in society that have discriminated against people based on their religion,en their race, on the disable, it doesnt change that rapidly. And so i think what has been happening is that the Disability Community has been organizing more, 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. There is a much a movement of disabled people which did not exist at that time, and the movement 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. Read you book and watched crip camp on net nix and talk about a place you mentioned in the book, the first place where honestly you just got be a person, just got be a kitchened 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 saw a teenager get of it new room i want my privacy. They want to ability to be bad, the ability to have the boyfriendgirlfriend to be seen sexually to exist in a world and made my think about how we look at people with disabilities whether theyre 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 reminded me or taught me just like everybody else, there is a really rich interior life, theres person who wants to be heard, and deserves to be heard and i emergency thats at the heart of your argue; were no different than you are. Guest right. And i think you shaped it very well, and for me, some of the issues are that it is frequently difficult for disabled people to really talk about that part of themselves. We typically grow up in familied where were 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 classes when i was nine years old. And then when i went to camp, those were types 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 as i got older and articulate things in a way that children cant. Why couldnt i get on a bus . Why cooperate people have to the same expectations. Why did people stare at me, of what it might have been, and equally important, i didnt hear people talking to me or my friends about a future. So, as you were growing older, and certainfully todays society, people are talking about what do you want to be when you grow up . People didnt talk to me and my friends what did we want to be when we grow up but be did want to be something and those their discussions that 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 good out it would not be uncommon i good to an airport, going to give a speech in another part of the country or world or whatever, and people dont talk to me. They talk with people im with. Who are there to assist me. Theyll say what does she want . That happens all the time. And i would say, in getting back to earlier question how it seems different, 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 of us 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. If they have a 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, were learning both about the commonality of experiences, and the differences of experiences. So, now you know its a pandemic. One of the big issues thats 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 are disabilities and so 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 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 in the u. S. , numbers 56 million people. Wow. Guest and according to the World Health Organization and the world bank, at least 15 of the population of the world, one billion people, have disabilities. So, my book is trying to do a combination of things. One is reflect me as i was growing up, and how i experienced life as things moved forward but also i hope, like riff crip camp, get poem to start thinking more about do they have a disability that maybe they know they have a disability but dent know how to discuss it . Do they have people in their family or friends and what kind of a dialogue do we really need to be having to ensure thattivable 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 were playing in fostering that. Host its interesting because part of what people know is what is in the culture, its what is talk about, what is taught, as an africanamerican, the Civil Rights Movement is clearly something i grew up learning about and not just free family but in popular cull noor school and you think but other moms the gay rights movement, the womens movement, story that even if youre not paying attention, dont care you know that the basic pin points of what happened and your point net book as crip camp came out other documentaries, people you thought would be in the no would say i have no idea and honestly i had no idea. Your fight was not a fight that leasts for weeks of months. You lay our fights that lasted for decades. That beg the case why are we not aware of the fight around disability rights and civil rights the same we are the other movements. Guest why do you think . Host i dont know. Theres this decision obviously not to teach it in schools. Theres the decision not to talk about it as much 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 hays something on right mountain mrs. America, going back through Phyllis Schlafly and the fight over the era. I cant say the last time i have on Major Television the story but disabilities right and you say disabled are the villains or the tragic antihero and never the romantic lead, never the best person in the movie. Guest or if they are they dont have disability. Two years ago coming home with john voigt im dating myself service im 72. This in the seven inside he was a positive character, playing a paraplegic. However, he didnt he doesnt really have a disability. And my left foot, all these movies where there are positive messages, forrest gump, played by nondisabled people. A whole other issue. One of the basic issues around why are we not seeing more is a combination. One is i think people are afraid of acquiring a disable themselves. They look at people like myself or whomever, and they say, i dont know how hey 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 dont really also think about themselves and their future. And the reason i say that is a little bit of a discussion i had when i was doing the show, it when he used to write able bodied and i said no i dont use the order age bodied because i use the word nondisage nondisabled. Dont use the word able because it says im not abled and i dont want to say the word i have disability because it should should be something they injured. Withty terminology people using able or disabled. Maybe not intentional lawsuit i think its the tomorrow that we use, like racist, is ableist, so i think that is an issue. I also think as you were discussing, not seeing and learning about disablity and the way disabled people are characterized and infrequently even when we are characterized, i 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 he street, i use a motorizeed wheelchair people will be curious. They havent 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 wants 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 street and their kids in a baby carriage were more on the same eye level. I am definitely drawn to them because i watch their eyes. And they look at my wheels and little boys lochte wheels all the time, little girls not so much. But talking to them and getting the parents engaged, some parents are totally there. Theyre kind of cool about it and theyll neil down and well excuse the wheelchair and point out where the batteries are and where the chair gets plugged in and all these others and others that just like please stop embarrassing me. Dont ask anymore questions. You can just see it. But i think that 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 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 disable. And people break preliminaries all the time. And its a temporary disability. But as people get older, their sight, their hearing, their ability to communicate, their ability to ambulate as independently as before, they may have other kinds of memory issues, and we tend to look at marginalizing people. What do you need to be prepared for in the event that any of these events happened 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 are in charge, i think thats really important. As long as you can be in charge or you have systems set up where other people you know and respect can be helping i think those are many of the issues but ultimately people that want, people are really afraid and another thing judy, that stood out to me i didnt learn until watching crib cam you talk a little bit about in the book your parents being told you should but her into an institution. They said absolutely not. Thats not what we are doing with our daughter but theres a moment where Geraldo Rivero goes to a place called willowbrook. I dont think ive 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 feed them just storehouse. It looked like something that Charles Dickens could not have imagined and the fact that this existed in the last century and was allowed was shocking to me. In pennsylvania there was an institution called pintos and i believe it was in the philadelphia area. It was very equivalent to willowbrook. Most of those big institutions are closed, one of the things that you can see happening now is People Living in the Nursing Homes and other congregate living programs, some are quite large. Not as large as willowbrook, not in the thousands but 20, 30, 40, 50 people. Not only are those programs bad for the individual person come but theyre bad for the community because they continue to perpetuate this image that disabled people need to be out of sight out of mind and then people are not treated as people as individuals. Now during the pandemic, as i said earlier, were looking at this issue of higher rates of death 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 they need to be able to live in 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 willowbrook after Geraldo Rivera had been given the keys by two of the doctors at willowbrook and i went with a nun and a reporter. 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 can you let me in. They wanted me to sign a paper that if i got injured i would not sue them. Of course i would not sign any kind of paper like that. It was a horrifying experience. When i worked for the state department i was in mexico and i got some employees of the state department to come and visit and institution with me in mexico city. Because theres an Organization Called the facility Rights International and they do work around the world on issues affecting people with Mental Health and psychosocial and intellectual disability. They been doing reporting on conditions in mexico and many other countries. It was the first time that staff from the state department had ever gone and visited an institution like this. When we drove to the institution the smell of urine was so overpowering even before we got onto the ground and while people were laying around naked like an willowbrook, there were one or two people who were there was no activity going on and you had many many People Living there. These models still exist in other countries and people are afraid in this country that because whats going on right now instead of looking at moving people into the community more where expeditious reasons, they might be looking at putting people in more restrictive environment. Which the community would really fight against. In the book what i took away from it on so many levels so many stories you tell people should understand, being a good disabled is exhausting not because of a disability but because of other people the unnecessary hardships they bring to it you talk about going to a medical review with the doctor who was completely off point in trying to understand if you were a teacher or going to get on a plane they wont let you on the plane or a million times over you have the conversation as you try to advocate for other people or participate in programs, were afraid something will happen to them and you like arent you afraid something is gonna happen to ever