events for may 26th to june 29th read all of the programs will be hosted by look at's facebook page and will be free to the public. the mississippi professional cancel their annual august 3 nonparty will provide virtual programs. so the lebron's book festival which will take place online on june 6th. and finally the dallas public library has collected a series of recorded author talks highlights north texas authors. ... ... praise it by hillary clinton for the insights, knowledge in, and

wit, heumann served in bill clinton's 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. >> that's 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 i'm 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 that's 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 it's 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 weren't many laud that respected the lights of other minority group sod at that point disabled people not being protect it wasn't 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 weren't 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 parent's credit, while they didn't 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 couldn't back and the principal said i was a fire hazard. didn't 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 it's 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 doesn't 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 there's a much -- a movement of he disabled people which didn't 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: it's 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. weren't defined by ability or disability, and there's 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 boyfriend-girlfriend 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, we're 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, there's a personal who wants to be heard, and deserves to be heard and i imagine that's at the heart of your argument. we're 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 didn't 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 can't. i would couldn't i get on a bus? why couldn't 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 today's society, people are talking about, what do you want to be when you grow up? people didn't 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 don't talk to me. they talk to the people that i'm with. who are there to assister me. they'll 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 they're 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 that's a very important issue. it's not just those who are physical disabilities. it's 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 it's improving, is that many disabled people do not want

to identify. even if they have a visible disability because of the stick marks how they're treated. they don't necessarily want to hang out with other disabled people. but as we are doing more together, we're 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 african-americans 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 they're not getting the services they need along the way because they're 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 don't 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 i'm 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're playing in fostering that. >> it's interesting because part of what people know is what is in the culture, what its talked about, what is taught, as an african-american, 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, women's movement, stories even if you're not paying attention and don't 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 don't know. there's the decision obviously not to teach it in school. there's 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 can't see the last tomorrow i saw a story about disable rights and you point out when we see

the disabled they're the veilline or the tragic antihero, never the romantic lead, never the best person in the movie. >> guest: or they don't have a disability. years ago combing home with john voigt, i'm dating myself. i'm 72. thisness the 70s. he was a positive character playing a paraplegic, however he doesn't really have a disability. and my left foot, all these movie where are there positive messages, forrest gump, played by nondisaged people. he that's 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 don't know how they do it. couldn't do it. they don't really know what it

is, and they don't 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 don't use the wore able bodied becauseeye the word nondisabled and i use it for a couple of reasons i don't like can use the word able because it implies i'm not able. and i don't 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 it's -- the tomorrow term we use is

disabled. that's 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 didn't 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 don't mind if somebody asks, and for children, i really want to engage them. first of all when i'm going down the streets and i they're kids in a baby carriage we're more on the same eye level. [laughing] >> guest: i'm 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 they're kind of cool about it and they'll kneel down and we'll 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, don't ask anymore questions. you can just see it. but i think the absence means people have logical questions.

we're not the majority of people in society. whether we're 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 don't see themselves acquiring a disability. and people break limbs all the time. and it's 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 don't want to behold that are acceptable weapon don't look at the need for personal assistance, likes i have -- i can't good to bed myself. can't get up. i can't get dressed, can't go to the bathroom. i can't do all these things but when i'm 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 you're in charge. that's 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 didn't 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 there's a moment when geraldo rivera bees to a place called will row brook and i've 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 they're 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 they're 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 -- they're not treated as people, as individuals. and now during the pandemic, as i said earlier, we're 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 shouldn't 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 there's an organization called disability rights international, and they do work around the world on issues affecting people with mental health and psychosocial

and intellectual disables and have been doing reporting on conditions in mexico and many other country. the first time that the staff found the state department had ever gone and visited an institution like this, and when we drove to the institution, the smell of urine was so overpowering, even before we got on to the grounds and while people were not laying around naked like in willow brook, 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 of what is going on right now, instead of looking at moving people into the community more, for expedition dishes reason they'd may be looking at poo putting anymore more

restrictive environments which the community will fight against. >> host: from the book so many stories you tell, that people should understand is that being disabled is exhausting, not because of the disability but because of other people. the unnecessary hardships they bring to it. you talk about going through a medical review with a doctor who was completely off point and trying to understand if you were a teacher, or going to get on a plane and they won't 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 we're afraid something will happen to them and you're like aren't you afraid something is going to happen to everybody? they'll be fine but you have to gird yourself for battle every day. >> guest: don't you fine that if you go back yourself or listen to your family, grandparents' stories, that this issue of guarding yourself, may be

different types of scenarios but really, as a woman, as a black woman, it's something that you really want to go away and i think your story can like my story, things have gotten better, but things will just pop up and hit you in the face. and you didn't expect it and you don't know how to answer it. and for me, you're in different situations, and by that i mean sometimes it's okay, i'm going to completely come back and tear you up. but in other situations, you're really needing to measure how you say what you say and who you say it to. so i think what gets challenging and makes me angry and sad is

how much it still happens. if you get to see the film, crip camp, i kind of cry a lot when -- and i think sometimes i go to cry when i'm angry and i heard a friend of mine who doesn't have a disable, woman, said the same thing having nothing do with the disable but sometimes when she is angry she cries. so there's two places in movie, one, a group of 150 people had taken over a federal building in san francisco because a set of regular layings on a law called section 504 prohibiting discrimination against disabled people in programs that got money from the federal government, comparable to a portion of the civil rights act of 1964, we had been in the building, really exhausting, people are really fighting hard to get these regulations signed, two congressmen came to the

building to hold hearings, and they had a representative from the health education and welfare come under the carter administration, and the gentleman sat in the front and i was testifying, and he kept shaking his head, and there's something about what happened while he was doing that, where i completely lost it. i was giving my talk and then at the end i said, i wish you would stop shaking your head like you understand what i'm saying because you don't, and then i didn't cia -- didn't cry, cry, but i was tearing and the audience applauded, and we have shown when i worked at the state department a film called lives worth living and we showed he it all over the world. that particular part, people applaud all the time. the reason why i think they applaud is not because of what i

did but because what i did is what they want to do. the number of times when we confront where people are saying or doing something, we understand, and we don't mean it, and whatever it may be, or we do understand and get out of here. whatever itself may be, your skin, race, orientation, whatever it is, that's what people need to really understand. not just about disable but in my view about discrimination overall. discrimination hurts. discrimination can result in death, discrimination can result in nonequal treatment, look lack of education, lack of employment opportunities, income, on and on. but we all need to have a better understanding of what as a society our vision is, and so for me, one of the parts of the

book that was important was trying to be -- trying to really remember how i felt in these different incidentses to try to make them as real as possible , and one of the things i hear from disabled peel around the world is how reading the book is their story, and that is very powerful and my comment you were making about the book, many other people who don't have disabilities saying we didn't know this story. i think the question of why didn't we know this story? i think it's because people really haven't wanted to. i think what is great about crip camp and the book is that if you're willing to take the time to read the book, if you are willing to take time to watch the movie you'd get a better understanding.

of course reading the book and watching the film is not going to change the world. so, if reading other people's books, they're more people with disabilities who are writing books, the great woman named gia brown, 28-year-old black lesbian woman with cerebral palsy in upstate new york, she is funny some smart and written a great back that is out, and other people like that, and so reading and saying to our local television stations and producers and movies, why are we not seeing more? why are we not seeing disability with people from all different backgrounds? >> host: an important question. at the end of the book you talk but where we are now. you go through so many administrations, takes three or four presidents before 504

finally makes its way through. and then you talk about where we are today. do you find yourself after all these years of being the fight, hopeful that the things you fought for will remain, fearful they will be stripped away? they say we exist on a pendulum, thing goods back and forth. do you feel we'll swing back towards protecting the rights or afraid we swinging away from doing anything for them. >> guest: i think the mom has gotten stronger and obviously when the book was written and went to print none of the situation we're living in had occurred yet. and i am very afraid about the lasting impact of the pandemic. not just on those with disability but across the board and what i know our community is going to be fighting for is making sure that laws which protect our rights and which

protect the rights 0 others, that's one very important part of the changes that have occurred over the years, that leadership conferences of civil rights, for example, very broad national organization, includes disability and disabled organizations in their work. there's an organization called the international disable alliance, which is fighting on an international level. an important convention that came out of the united states -- i'm sorry -- u.n. called the convention of the rights of persons with disabilities which was modeled after the american with disabilities act and have been ratified in 176 or 77 countries. that particular treaty and the americans with disables act and others, we must fight for like all the other civil rights acts. we must not allow governans to

push back against these protections, and i think that our community is more at the table than it was in the past, so we are right now playing an important role. senator casey's office, for example, is doing an amazing job and has been his entire term in office, really fighting for the lights of disabled individuals, including people's intellectual and developmental and mental health disables. so he is from my perspective a champion that is making sure the voice of disabled people are engaged all the time. weekly telephone calls to greet people to engage people so while i am concerned very much for the country and the world, i do believe that we have a better ability to fight against the kind of changes that some people may want, and i'm really hoping

in the fall with the election that we can make some changes so we have to be less fearful because we're not represented by someone who is respectful to us. >> host: you -- as i was watching crip camp and show pictures of you being a teenaged girl sitting there with your friends and now we can see the arc of what you went ton do with your life, do you -- you always wonder when somebody steps into a moment. when a rosa parks or martin luther king jr. or gloria steinam or somebody, all the people in the world chose to step into that moment and you truly have been that person when it comes to disability rights. what what do you think it was but judy heumann who has the person at the fresh fund of so many of these fights. >> guest: i really am thankful to my parents because in their own way, they didn't know what

advocacy was but a they learned about it. my mother with the support of my father, would step by step try to address what was happening. so, i think that is definitely part of it. other friends of mine, we would do the camp experience and others, talking, but i thing something within me -- i always was born in philadelphia but i grew up in brooklyn, and i do actually talk about if i wasn't born in brooklyn i probably wouldn't be the person i am today. i really do believe if you can make it in new york, you can make it anywhere, and i think i learned really early on that i had to say something. when things were going on i felt were wrong, i had to say something. i had to try to do something. and i never have been a person who want to do things by myself. i've always wanted to work with other people.

and so for me it's -- we each play a different role. i think i'm a reasonably good strategist, i'm a reasonably decent mouth to speak and if he have other friends who are great writers and do all these things. we come together and we make a great team, and i think that's really why any movement moves forward, because the people who are adversely affected by discrimination or whatever the issue may be, there's a bond between enough people to be able to really not only complain about the problem but really look at solutions, and for me it's recognizing that solutions don't happen overnight, even when you make big gains, like with legislation, getting that legislation implemented and getting people to understand what is wrong with racism, what is wrong with anti-semitism,

what is wrong with these different things are it's a challenge and i love working with people that try to make change. >> judy, we're all of us, whatever categories in, we're all the beneficiary of the work you have done and it's been on authorize get to spend some time social live distance as we have to be, to spend time with you. andy is going to come back in and other people will get to ask you questions bums i just want to say, thank you. for what you have done and i'm glad to be aware of it and i've learned so much that hopefully will shape my behavior going forward. >> guest: hopefully i can see you in philadelphia some day. >> host: i'll buy you a cheesestake and a pretzel. >> guest: okay. i appreciate you having to get

up so area. >> thank you so much. appreciateow doing this, we'll see you soon in real life i hope. >> absolutely. >> these days will expend as always, andy, it's been a joy. >> i want to meet your children. >> you say that. be careful what you ask for. >> no, i do. enjoy the rest of night, guys. >> high, judy. >> hi. >> so we have a ton of questions that have come in. unfortunately we're almost going to be able to get to handful of them so i'll jump in here. the first question that people seem to want to ask is how do you wrestle with the urge to advocate, educate and change the world with just trying to live your life. are there times you get exhausted by teachable moments? >> guest: my husband says the same thing all the time. he's like always complaining i

work too much, but i'm kind of driven, and, yeah, sometimes i get very frustrated by how long it takes to make change and how people really in many cases still don't get it, and, therefore, are not fighting with us and not even fighting but just don't understand why it's important for disabled people to have jobs and looking at what needs to be done in a business to ensure that someone who is able to do the job can get the accommodations they may need. i'm jewish as if side a number of times and one thing the jewish community has over the last i think 20 years but really more, in the way last ten years

because foundation in boston, but the foundation has taken on a number of issues, one of which has been to look within the jewish community and the orthodox, conservative, on and on, and helped to develop discussions that allow us within our communities to look at what we need to learn and what types of specific changes need to be going on within our institutions. that to me has been hard and pain inflame many ways because of some of the things i said earlier. sometimes it's difficult to tell someone that you sit next to when you go to services that you are really upset with their thinking to be able to be strategic but how you talk with people to get some issues moved forward. so i try to be a change agent. i -- and sometimes i just check out.

not for very long because i'm a complete doc. >> host: what do you do when you check it snout what is check ought for judy heumann. >> guest: trying to spend more time with my husband. i like to go to movie theaters because i'm not good at just being idle or still when i'm here. i go to a movie and theater, ballet, whatever, and then you're there, so you have to focus on it. but otherwise it's a problem for me. >> host: let see. more questions. i found it very interesting that the black panthers helped you out during the crucial sitin. did the relationship endure afterward? >> guest: so, one of the -- it depends in the organize of the demonstration was a member of the black panthers and his assistant also, and brant low

lomax was his name, he unfortunately passed away. but the relationship continued and i would say they were supportive of the work that was going on within the disability community, and that was always important. i think that's one thing in the bay area, san francisco bay area, berkeley, oakland, that the center for independent living, which started in the early '70s, very much worked with all type of organizations, addressing issues of discrimination, and we get support from different groups when we needed them and they could come to us, and we would participate with them on different issues simple think it

was at that time a really important period of learning and when he wad the demonstration in 1977, which lasted for about 28 days, there was daily support outside the building, of people demonstrating, and it wasn't just the black panthers that supported us but actually the gray panthers was one of the groups that was involved, and memorial church, their minister is a great activist and a real social justice person, cesar chavez and others supported work, in now and other labor unions was very supportive when we took 20 people and went to washington. so we could not have done that by ourselves. no movement in my view can get what they need unless they can

eventually get more people supporting what needs to happen, and so i think that's a principle that we have always worked on and continue to work on. >> host: here's another question. i understand that the camp was disbanned due to financial cosntrained. there are no offers to buy the camp and keep it good work going? do you know. >> guest: i have no idea. the answer was no because otherwise it would have been sustained. think it's very interesting that the camp, like many -- there were many different camps around the united states for disabled children and there were camps for disable end children because the regular camps didn't accept he disabled children, and so that is another interesting point, and today there are all kinds of camps that kids good to

study that technology or theater or this, that or the other thing. my brothers went to a jewish summer camp, and they went there to have fun, but also one thing they were learning there was about culture and songs and different things in nature. when win went to camp for disabled kid none of that was considered a part of the camp. people were not thinking about, this is a great opportunity for disable end kids to get together and start talking about how they feel as if they were people. what are the problems and solutions and that's what health young people will say sometimes what should we do? and one thing i always tell people is, don't wait to get permission from older people. what do you want to do? and let try to work together. but fight for what you believe in and move forward with and i

that's what we did. we didn't know a lot. i mean, we were looking at television and learning about the civil rights movement. we were learning about the marchers, about the boycotts, learning about rosa parks, learning about martin luther king jr., and so many other leaders, and what we learn is that people believe in what they were doing. and they would fight as long as they had to in a pacifist way and other ways, to be able to make changes that could positively affect communities, and those are very important things they we were learning, and trying to emulate in our own way. and so i feel like we're very thankful for lessons we learned over the years and now working more collaboratively with other movement is think is really paying off not just for us but

for others. >> host: throughout the course on the book that support of your family plays an essential role. what advice would you give to young advocate width disabilities that lack the support of their families and how do you overcome the fear in order to advocate? >> guest: first of all i appreciate the fact you acknowledge the issue here. i don't think i used that word tonight but it's completely appropriate word and i believe that i did discuss it in some ways with a tamela because one can be afraid legitimately, depending on the situation that you're in. so i think it's very important to try to speak with other disabled people, to talk with them about situations, or other people, doesn't necessarily have to be someone with a disability but someone who has experienced discrimination to try to learn

from them about what does it mean to be fearful and what do we need to do to try to overcome it, and i don't mean overcome the fear, i mean try to address the problem. and so for me, an example, i was in new york, going to a restaurant, chinese restaurant, and i had a couple of other friends who had disabled with decided to good into a restaurant because it had enough space for more than one wheelchair. when we got in there we were told we couldn't stay. the manager, owner, whatever, said we had to leave, and that was one of these moments where, first i was afraid. like, oh, my god, this guy is saying that because we have disables we can't be here. then it was for me, well, am i going to leave? no way.

so what am i going to do? i said, call the police. and he didn't call the police. so we stayed and we had dinner there. we should have left and not given him our money but on the other hand it was important we wanted to proof a point? was i afraid and definitely was of the was it good i was with other people and we could talk but it? yes, absolutely. continuing to talk but it today, because of incidents are still happening in spite of the fact we have laws. now, the point you made about having a family that is supportive. one, understanding why they're not. but on the other hand you need to do what is right for you, and maybe -- i'm sure you have discussions with them, but

finding other people, maybe other adults who have children with disabilities, where they're being more supportive of their children, and just learning from the other parents but i think at the end of the day, it's finding other people that you can relate to and talk to. you're going to grow up and i fight for what you believe in and get support from people to help you move along the way and grow up to be the person you want to be. >> host: thank you. a number of people have written in to thank you and say they were moved by the film and moved by the book so i'm just -- i want to acknowledge that there are number of people with disables from various communities who are saying that, and just thanking you from the bottom of their hearts. let me move on to one of two more questions. you sort of address this already but i think this person is

looking for a specific moment in some direction. this is from my son, nonspeaking adult who uses spelling on an alphabet board to communicate. you're an inspiration to me. when did you start to realize if change was going to happen, you would have to be leading it? you would have to be leading it. in. >> guest: i never seen myself as a leader. i see myself as a leader with a group. my mother was a leader. my mother worked with other mothers. one of the situations that was going on when i was greg up issue finally got to go to school as i said earlier when is was nine but only in segregated classes and school with knopp disabled kid weapon went to classes in a basement. my mother learned that if you -- because i was in a wheelchair, all students who used wheelchairs and cooperate walk up and down steps were going back on to home infrastructure. money mother organizationed this

other mother to. so i'm sure she was afraid, she didn't know really what she was doing, except that she began to realize that working together things could happen, and so for me, my model has typically been, even if i am doing something on the spot, like an issue with the airplane when they arrested me on an airplane for night without someone else, i was there by myself, but i always would talk to people. so, i really appreciate the fact that people are resonating to my story, but at the end of the day what is really important is that people recognize that it does take a village to make change, that we all play a different role, and that it's really important for us to stay in touch with each other, to be supportive of each other and to

play the role that feels right for us at that moment and people evolve, and move forward and can take on more and more responsibility if they choose. >> someone asks this sort of circles back to beginning of the book and the beginning of your talk this evening. did you have any experiences with children your age before the age of nine? if not, how do you think that impacted you? >> guest: so, i had polio when i was 18 months old. and obviously i don't really remember anything about that, and then when i was at four years old i went to a rehab center in manhattan, and my father would bring me there on monday morning, and pick me up friday afternoon. these are some of the areas where by parents became advocates. they want the kids to stay over the weekend and my parents said,

no, i wasn't going to stay over the weekend because nothing happened over the weekend ask they want met to be home with the family. so, my father would pick me up on friday, i would get there early on monday morning. remember at that time meeting other disabled speed, particular hi older people. so that had a little bit of an impact on me because that was really the only time i was seeing other adults with disables who were productive. to they were there for a reason. some of the people at the hospital also worked there so that might have been the first time i ever saw disabled people working. but -- what was the question again? >> host: the last part. let me go back and see. went out of my head right after i asked it. >> sorry. >> host: that's okay. >> guest: how did it influence me. >> host: yeah.

>> guest: so, that period of time from when i was five years old until i was nine years old, was very -- i was with my brothers and my neighbors, all of whom didn't have disables. i wasn't to hebrew school with my family because it was small synagogue and we went every sunday. and then i started going to another hebrew school, and i was the only disabled kid and there's an incident in the book where i talk when i was eight years old -- remember, at that time there were no such things as motorized wheelchairs. all of the houses in the neighborhood that i lived in, except for ours which my parents had a ramp built in the back -- none of them were accessible, so i always had people pushing my

wheelchair because i wasn't strong enough to push my own and if i went to neighbor's house is had to be carried in and out. so the issue of independence was something that didn't really come into play later on because i was so dependent on other people. when i had polio my parents built a bedroom and a bathroom on the back of the house, but it wasn't very big, and for example i couldn't get to the closet. my mother had to go to the closet. wasn't enough room. so even things like picking out my clothes, making choice, was difficult because she had two other kids. so, she was my mother. so she knew what i -- she knew what she wanted me to wear. didn't have the basic experience of going to the closet issue picker out what you want to wear. i if your says know i don't like it, and you, i didn't have that

ability. so i think one of the issues around camp and special classes, camps in particular, was it was a time when we were able to begin to make more decisions on our own. we would either get our open clothes out or camp would ask what did you want to wear, didn't pick things out for you. little things like that are very important because kids learning how to make chase, how to make decisions, even how to argue with an adult, and try to put their position forward, those are all very important things, and one of the opinion that was discussed earlier about in crip camp you'll see there is this group and part of the group discussion focused on nancy in particular but others, who don't have the level of independence

and it's not just the physical independence. it's also one reason why i think it's important for parents who have disabled children to know adults with disabilities is to be able to talk about some of these issues. to be able to talk but what can be done so that you are not all encompassing in your child's life. ... by choosing who we want to help, when we want them to help us, how we want them to help us. those are all things we need to be able to learn in some way how to deal with. people, depending on the type of disability they have, people need to be conscience

of how people expect satisfaction if they cannot articulate it clearly. we know for example that violence, sexual violence and other forms of violence are much higher in the disability community. for many, many reasons. it is a very important issue that we need to recognize that it's a problem, we need to look at what's being done to address it and one of the thing that frequently happens is they were not looking at the data were not looking at the causes, and institutions are another cause of violence against disabled individuals. we read about in the paper when things are really, really bad. the daily things that go on we don't even hear about. >> host: and i would assume in the smaller homes or people are living on their own, it's not as much of an issue within the congo get homes where there are just one or two

people. >> guest: yes, especially if people are getting the support that they need again to make sure there are issues they can discuss. >> host: there are so many questions and we just don't have time unfortunately. >> guest: we will do it again. sue went okay will see you here tomorrow night at 730. [laughter] one last question somebody says what would be different today of the history of disability rights were incorporated into the curriculum and how do you think it would affect disabled and nondisabled children in the years going forward and into adulthood? >> guest: i would say it would be positive. we would have more knowledge, we would have a greater ability to have discussions and ask questions. and not be afraid of asking questions as much. people are afraid of asking questions. we would be able to really

look at problems and solutions. we will be able to learn from what has gone on in other movements. what are some of the common solutions but are different solutions for example rosa parks. rosa parks was arrested because she refused to go is a boycott and as a result of the boycott was people could sit in a place in the bus they wanted. the equivalent in the area of disability really isn't there, it wasn't there. because i could not get on the bus and other people with physical disabilities could not get on the bus because they were not accessible. people did not want to make them accessible. why would we make them accessible people are going to use it? why are we going to put ramps on the street people aren't going to use it question mike white who need accessible bathrooms people are going to use it? why do we need braille? why do neat we need sign

language? why do need captioning questioning why do need we need any of these things? when people don't understand about the benefits to us as disabled people but also the universe -- the university aldie i'd love to talk about being in washington d.c. it and we have a metro has trains and buses. the way the trains became acceptable in the 1970s, when they were being constructive, was a lawsuit against the city and the company that was contracted to make the train. if that had not happens, we would not have had accessible trains. okay, fast-forward into the 80s, 90s, 2000. when i go to an elevator for the metro, it is very common that there are one to five baby carriages lined up at the

elevator because they can't use the escalator. people have no idea that the reason for the elevator is because disabled people fought for them. we didn't fight for them just for ourselves, we fought for them for ourselves and because we clearly understand them bass majority of things that we need, benefit other people. if people were really learning when they were younger, if disabled and nondisabled children were going together to schools, to camps, early childhood, the high school. if in gender studies and black studies and latino studies, on and on if disability was a part of the work that was going on there, that people learn about disability in the context of those other study areas, i don't think things are be perfect. but i think we would be much further ahead.

there's a difference between disability and poverty for lack of education there's various forms of disabilities so a robust intentional inclusion and really looking at where we are in what we need to do, i think would really have a profound impact on our country and the world. >> host: it sounds like you have left us with a lot of work to do. you are quite a model for us to follow, judy, thank you so much for all your time tonight and sharing your wisdom with us thank you for making the world a better place for everyone. >> guest: thank you, you're welcome beef sure to follow us on crowd cast and follow us to access our digital archives. and the updated event schedule it seems to changing every day. folks, keep reading and have a

good night. judy, thank you so much. take care we will talk soon. so during a virtual author program hosted by townhall seattle david dailey reported on efforts around the country to expand voting rights. here's a portion of that discussion. >> you see this happening all over the country. i watched it in maine, home to the rich tradition of independent candidates were citizens demanded a voting system that allowed them for their choices that most people opposed with both parties there stood in the way determined the long petition drives, not once but twice and one. these people did not wait for the supreme court, the did not wait for superhero presidential candidate. they stood up, they acted they became the protectors of

democracy that i think we all imagined the courts to be that we want our representatives to be. some of these victories have been pushed back on legislators since have not embraced the mall they fought them, i think it is important to remember two steps forward go to a half step back of the history of voting rights in this country it's the retraction it's never been a straight line and even in the current chapter it's the latest in the struggle over the vote we want to imagine the history of the nation is ever expanding suffrage it is not been that way, the struggle did not end with the 1h 14th amendment did not end with the voting rights act and it did not and with the

victories on election day of 2018. there's a lot of work that remains in the work that remains is going to get a lot more difficult. in keeping a democracy requires a lot of work. but i think all of these stories really show when regular citizens unite and fight for the kind of democracy they want, they grab onto that long moral arc of justice in the universe and they pull it down hard. the structural barriers, they don't stand under that kind of pressure. >> you have to watch the rest of the program go to the website booktv.org and search david dailey for the title of his book, un- rigged. >> next on book tv it is an

author discussion on end-of-life care from the regent virtual bay area book festival. author and hoover institution leader larry dimon talks about the impact of covid-19 on democracy around the world. later is is a conversation with co-owners of source booksellers in detroit on how their business has been affected by the pandemic. check your program guide for more information. ♪ ♪ so hello everyone i will be moderating very wonderful session with three close colleagues of mine it's shedding light, end-of-life planning with the experts.