2020 Kansas Notable Book; ADA at 30 with Judith Heumann

produced at home and broadcasting from kansas public radio at the university of kansas says this is katie our prisons i'm kate mcintyre today on k pr presents it's a conversation with judith heumann she's a lifelong advocate for the rights of people with disabilities and the coauthor along with chris joyner of the human an unrepentant memoir of a disability rights activists he's also the featured speaker as k u marks the thirtieth anniversary of the americans with disabilities act it's at a thirty nothing without us october twenty eight and twenty nine welcome judy hi it's great to have you here today i'd like to start our conversation with a disclaimer of swords or perhaps an explanation of why your story meant so much to me personally my father was born with cerebral palsy he was a really incredible man he was smart he was successful he traveled around the world and yet when he was born in nineteen thirty three his parents my grandparents were

told the same thing for doctors told your parents after you contracted polio that the best place for your child would be in an institution did you recognize and get my father was born long before you were to back to that air out what are society's expectations for people born with disabilities or oral had disabilities whether they were born with them or not unfair so it's great to be on your program thank you for inviting me i think it's fair to say that there were well expectations and i say that because you know continue with my story and an innovator your grandfather what happened to him with that with his education but for me when my mother took me to the local public school to enroll me and you know she was and i'm expecting anything from that at the school

she was going to take me there pull me up the stairs i'm sure she would've got to go to the bathroom like come during lunch or something and then take me out but the principles that i couldn't go to the school because i was a fire hazard and that the board of a word out of it each year and they did but they provided no teacher and then i didn't get in to school in to a special ed program till i was the middle of fourth grade and for the first second third and a half of the fourth grade i had a teacher who came to my house one day for an hour and another day for an hour here and that was it and so you can clearly tell from the level of education that i was getting that they really had no expectations i'm a weapon against the law because at that point you know there were no laws specifically on education for disabled children but nonetheless i should let me be any

why should have been able to receive the same projections as my brothers did my brothers ellen went to school and howard f a week my mother and father would have been considered you know i had to be abusive pants and his kids went to school at least is that there was every day right so i don't even go to school equivalent of one day of education are from like my brothers so i think really they were limited expectations and there was really very little of the disability rights movement that point in the early nineteen fifties i would say i had a baby the second well we're still in the first world war ii we're definitely the most active groups i use that the blind and deaf community is beginning was that there are

organizations that have cerebral palsy at least an hour east coast and then that next term is that they were deftly active in your act and abc had a dire less arable parsley and so he was very involved in trying to get disabled kids in school and down by all of franklin roosevelt had polio and while he hid you know the fact that he's braces and crutches and a wheelchair many times and that was not like known to many nonetheless many people that reality nobody did but i am now i'm at that point i would say limited expectations after the general society then not going to school five days a week

and your book opens where you talk about your childhood growing up in brooklyn and it felt like really happy childhood playing with neighborhood kid school and brownies going to hebrew school going to piano lessons but everything changed one day as you in your friend arlene we're heading to them candy store you read that excerpt from your book i think it was a beautiful sunny day but it might've been cloudy i don't remember but i do remember was being caught up in my conversation with arlene and she pushed me and my wheelchair talking about what we were going to buy the candy store or what we wanted to do later that day we are pleased to be walking around the corner to buy sweets infinite that your neighbors' breakouts which i knew is that to make myself because i'd been there with my mother for her back disappointments replies to cross the street i mean turn me around to lower my wheelchair off the

curb pushed me across the street and then once we reach the other side she put her foot i'm amenable are on the back of my chair except me and the chair back and lifted my chair on the sidewalk as we give this a few kids came to rest in the opposite direction they're walking slowly toward the sat down the sidewalk as they passed eileen shifted my wheelchair to the side to make room for them we didn't know them and didn't pay much attention anglos as we were in our conversation so i was surprised the one of the kids turn suddenly to me he said if anime staring down at me and i will chair it sick yes we were actually i stared at it not understanding what it say he repeated incessantly his voice boomed i set my head trying to clear the words away i was still confused but couldn't speak our usec he asked slowing the words

down as if i were toddlers the world went silent as the words reverberated in my head i could be eric anything except those words are you sick sick sick sick saic i sank down frozen with confusion wanting to cover myself up with something anything to hide them that question the boys interested eyes i mean i use a kia statistically almost shouting suddenly i became aware that neighbors that's behind me and my face turned cringing lead the prayer it does he think i'm going to the doctor but he's that my chapter i thought a fiercely fought back tears i couldn't when it crying in front of everyone i wasn't thick it made no sense i know i wasn't but then

why we see asking me that i became uncertain of myself was a sick i saw myself in his eyes and light around the shift it shatters imagine the corners of my mind previously submerged words thoughts and have heard conversations tumbled into the glare of the spotlight in a blinding flash everything in my light in a perverse kind of sense i couldn't go to school i couldn't go to that goal i could do this i couldn't do that i couldn't walk up the stairs i couldn't open doors i couldn't even cross the street i was different but i had always known that it wasn't that it was the world and outside me the world thought i was sick sick people stayed in bed they didn't go out to play or go to school they weren't expected to go outside to be a kind of things to be a

part of the world i wasn't expected to be a part of the world i knew this to be true is if the mallets had already existed for years throughout my entire body i felt nauseated humiliated at the idea that everyone else had no ms putney had they kept it from me the embarrassment settled in as a call bought libor my stomach i could feel it spreading into my lands with its anywhere clammy i don't know i remember eileen was pushing me we're going to the store to buy candy and we were chatting and i was a butterfly becoming a caterpillar that's judith heumann reading from it being human an unrepentant memoir of a disability rights activists today this coming to the university of kansas as a featured speaker for a da thirty

nothing without us october twenty eight and twenty nine tv that excerpt is just heartbreaking i think it's a line that i was really glad to tell a close it's alison thing that happens today i believe because of that lack of inclusion integration into society i disabled people of various types of disability i not seen on tv were not typically seen in children's books and movies and where we are frequently getting a little better but frequently you know where seen it not as equal people within the community and you know we've seen as tragic figures people who wish to commit suicide and to commit suicide i am and that story's frequently don't really reflect

who we are and that of the people and so one of the reasons i wanted this book to be as authentic as possible was so that other people that are experiencing that same or similar that things in their lives would be able to run away and that would also help the general public to understand that well what this fight about is talking about the nineteen fifties in the twenty first century the stars are still teachers one of the ironies of the story is set in the fight for disability rights because so much of the world has been inaccessible people with disabilities or often unseen at a kind of out of sight out of mind yeah and i think partly it was the kind of accessibility but honestly i don't think that was

exclusively reserved empire as my story says npr in nineteen seventy five when i walk ob education for his children that with gas now called the individuals with disabilities education act at that point the government acknowledges there were at least one million disabled children out of school on and then many many others who were in school at that point i were still matter in regular classes many of them were in segregated schools and many others weren't segregated classes like the ones i went so i'm in and then we had tell us what's the muscular dystrophy telethon jerry lewis jerry lewis and that nbc pete married several probably tell and both of those tele times objectives were to raise money

for medical research and to you know by technology and other types of things that people needed and wasn't being provided by how the jets have but these telegrams really preyed on people's fears and the fear of acquiring a disability and that's what the fund raising where the bat you know give money not only to help these for cripple camps but also give money so that hopefully your kids won't get this and so for those of us who had disabilities and he just signed as a normal car alliance we you know knew that these telephone actually had a supporting role and continuing to say that we should not be seen or members of our community but images of the matter is that it was a bad if health insurance when in providing o

t p t will share sketches and other types of things like that you would never needed to go to the general public to plead for money i'm to buy i think that you know these organizations and nothing that the organizations were banned organizations i think in many cases they were and are today still providing some important services for people and many of these organizations now have really become more advocacy organizations i think you know they're in a number of very important aspects to the disability rights movement and merging and becoming stronger through today and that is that the disability community you know when we began to organize and college campuses and get disabled student services offices created ad jarrett community organisations like disabled inaction and other local

groups there are much it was we are a civil rights human rights movement believes at that time the term civil rights because that was what was going on you know the advancement of the civil rights movement and while the civil rights movement itself did not embrace just a disabled people as a part of the movement i am what we were embracing what they were doing at the outset and so we started calling it in the seventies the independent living civil rights movement i'm independent living phrase came about because in the nineteen seventies i am there was a community based their start in berkeley called the center for independent living out which was really focusing i'm disabled individuals working on changing laws and policies in our communities and also empowerment and disabled people so during this into a social model civil and human rights

and i think that really over time decades as the group's flag i'm what you'd diners and u c p and muscular dystrophy and many others are recognizing that they really had to be addressing issues of discrimination that's another issue came out that the word discrimination was not used that frequently at that point i mean it was things like oh people didn't mean it they didn't understand i am and those are terms you know that when that it being accepted in either i write these movements civil rights it with the women's movement the anti war movement that i'm livin for all the people which at that point is being called that they can't move i'm discrimination where wood was aware that was being used it in those communities way before we started using the word discrimination on a

regular basis and their disability i listen to judith heumann she's an advocate for the rights of people with disabilities co author of being human an unrepentant memoir of a disability rights activist and a featured speaker at eighty a thirty knot without us at the university of kansas on october twenty eight and twenty nine i'm glad you brought up the issue of discrimination in employment because it was your own discrimination in employee may your desire to be a teacher that's a cue from being i guess what i would describe as just a very determined young women and turned you into a fighter well let this story is that i wanted to be a teacher i actually i don't don't know where they came from except i was the first one in my family to go to college and i my cousins were all in the nie those who went to college didn't study become teachers so i was saying you know

that there was a baby bone people becoming teachers i happen to have a good education which i think if we also influenced me and anyway i decided i want to be a teacher and some of his students who were older than me in the class said to me the agency that was going to pay for me to go to college the department of rehabilitation they said don't tell anyone to be a teacher because you have to demonstrate that there are teachers oh are using will chairs just went up a few to do that to tell anyone to be something out so i basically i'd call the american civil liberties union what i was that air fresheners that for college said i was gonna be studying to be a teacher my neary in education and i that i was afraid that i was going to be denied re

job and they said well just go ahead take your question is if something happened let's not sell fest fella too and i graduated i had to take a written an oral and a medical exam that's it it's a required at that time and that there were no laws no final four know maybe a so all of the exams are getting completely inaccessible building my friends helped me in america's buildings i guess the rating sam i guess the oral exam and i was jailed on the medical exam i had and a woman who i you know how she had become a doctor really based on my experiences with her but she's very rarely abusive and at the end of the day after having to visit her two times the written reason why was denied my job was paralysis above

lower extremities cifelli of polio wise and so it wasn't on the one hand surprised because that's after all what i thought was going to happen but when i got the letter i was shocked and i wasn't exactly sure what to do so i call the aclu and they said this is what happened and i like to come meet with them and the rest of the phone said they'd get back to me and they got back to me and said there was no need to meet they would not represent me because i i didn't i love the job was that based on discrimination but i'm for a medical research and i said it's ridiculous you know of course it's based on

discrimination class requirements that what i needed to do to be a teacher i had no health problems i am and they refused to see me so then i really was contemplating am i gonna try to file a lawsuit and it was really matt simple thing for me to decide i want to do and quite frankly i was dale yup ruminating over it when someone that i knew at long island university it was studying journalism and he disabled by and he reached out to i worked for at the new york times will weren't a story i am i am i being denied by license and your lady out basically saying this has nearly nineteen sixty nine seventy that there was a shortage of teachers and that this wasn't right and then the next

day in your times had an editorial which supported my getting my teaching mice and then i got a call from an attorney named roy look as he later i'm at it before the supreme court was like a lawyer that roe versus wade and he called me at me about a book he was writing i'm so rightly have a look at disability and tell you get a story in the new york times and our he was interviewing me for the book i was interviewing him and actually and asked him if he would be willing to represent me and you say yes then i am an attorney who were the custer my father uncles but restore also said that you represent me so i had two good pro bono attorneys who represented me and we are hearing was before i had the judge's name was constance

baker motley the first african american woman to serve on the federal bench and so she basically tell the board a bed that as she encouraged them to do another year medical age and so i'm a dead end was authentic different actor who basically apologized and then i got my license then i had difficulty getting a job because the way schools were inaccessible and i finally got a job teaching in the same school that i had gone to when i went to school i'm busy with judith heumann she's a lifelong advocate for people with disabilities co author of becoming human along with kristen joyner and the featured speaker at the university of kansas at age thirty nothing without us october twenty eight and twenty nine of my conversation with judith heumann will continue right after this