Already know she is a wonder. Not only a fearless activist. She has put her body in front of buses and the defense of the white house and has also a great warm and tender heart that makes her a National Community builders who is a combination. You find her in the streets with disabled in action, and other groups. She has also tireless mind. Youlyou will read about it in r memoir, but she became an educator and a top italian for many years and also create and post the first disability studies course at the new scho school. This is the first book sold through its printing in the first week. We are already printing your buck. She doesnt even notice. [applause] she isnt a beginning writer disabled in action and ragged edge as well as her personal blog, but said that disability culture. She also has an author website. Her disability culture. Org, it is a beautiful website. She has been a recipient of awards for her writing and activism and is known for her speeches. In 2008 the womens march in new york city and just this month for the 2019 disability pride parade in new york city where she was the grand marshal. [applause] [cheering] although her life journey is unique and you will hear about it from her directly, her journey is also one with which many disabled people can identify, it is a journey to find ones place in and ablest world, where disability is seen in negative terms. Her power is in refuting all stereotypical narratives of disability. Through the telling of her life story, this beautiful memoir, she shows the harm that the overwhelming focus on pity and cures has done to disabled people. The story exposes the prejudice ingrained in our social and political systems and she denounces the standards of normalcy. [applause] thank you for that introduction and all of you for coming in spite of the weather. I was in a panic earlier thinking nobody would show up because it was raining and especially those that use power wheelchairs, we have to worry about our wheelchairs so im glad to see quite a few of you here that braved the weather and came to hear me read. So this is the book, such a pretty girl, the struggle and the disability pride. The first chapter in the book, can you all hear me, am i speaking into the microphone . There is a little fishing town in sicily on the east coast. For those of you who know it is in the province. Thats where i was born, my hometown and where i grew up until 13yearsold. The first chapter the book opens up and im going to read a little bit from very beginning. I have my glasses around my neck but it looks like i dont need them. If i do i will put them on. When i was four or five, i wanted to be ugly and got angry when people said i was pretty. Im ugly. Say that im ugly, but no one listened to me. What a pretty little girl, they all said, and inevitably they added what a shame. There were suc was such sorrow r voices, such a look of anguish on her face as. I didnt want my being pretty to make people sad. Better to be ugly, i thought. I especially didnt want my being privy to make my mother said. As soon as she heard those words even if she had been laughing a minute before, my mothers eyes filled with tears in her face turned into a mask of agony. My mother looked just at a sorrowful woman. The name and the statue across the street from the church where we lived in the town in sicily is a statue of mary holding the dead christ, a sicilian version of michelangelo the mother dressed in gold and purple silk, grief carved deeply into her painted face and on her lap, her dead son draping and lifeless, abandoned. People seemed as mournful when they looked at my Mother Holding me as they were when they were looking at this holding her dead son. Sometimes i thought my mother and she was one in the same. They even have the same name, maria. I will read a little bit more from here. I have early memories of being on my mothers lap as she sat outside with a tone when men while my father was at work. He sat in the afternoon sun in the winter and send in the summer we sat in the shade. My mother told the women the story of when i was born, the midwives in sicily they were impressed to such a slight woman as my mother could give birth to such a big baby as me. She left my mother bleeding on the bed with my grand mothers tending to her for a few minutes and brushed me in her arms to the bakery around the corner to wait any on the bread scale. I was wrapped only in a sheet that it was warm in the afternoon of may 16, 1948. I was grilling so healthy and strong. My mother told the women were already talking at 16 months and walkina 16 monthsince walking oi was never sick or a fee for an that fateful night when they stole it from my family. Things getting a little bit ahead. Whenever my mother told the town when in the story of my getting polio, they look up from their knitting and sewing and would murmur. I leaned against my mothers chest holding my face, hiding my face in the folds of her blouse and smelled lavender she rubbed on herself. Wasnt her story prove that my mother was blameless . She made me big and healthy and strong. What happened to me wasnt her fault but those words were not an expression of regret and sympathy. They carry the connotation of guilt meaning the same in italian. What could my mother had done to deserve such punishment and its not my mother then whose was it that caused me to be the way that i was, crippled. In this first chapter, i try to show this very oppressive religious atmosphere where i felt suffocated and i didnt understand, little kids do not understand and i want people to see the harm of what they may think his kindness. My father on the other hand had other ideas for me. He always dreamed of america and thought the answer to everything would be to bring me to america and throughout my childhood, i kept hearing that, im going to take you to america. My father worked hard and saved money so he could take me to the best hospitals and doctors. I skipped a little too far. Let me go back. Here is. Maybe i should put my glasses on. I have so many little tags all over the book and it gets a little confusing. Anyway, my fathers wish was to take me to america, no, i had right. My father worked hard and saved money to take me to the best hospitals and doctors. Every time we went to a new doctor this hope was renewed only to turn and disappointment afterwards. Italian doctors are too ignorant, he told me when we came home from yet another trip to rome, they dont do research, they will never find a cure, then my father smiled his big bright smile to show me he was not defeated. A new plan had been germinating in his mind that we would leave this backwards town and come tray where ignorance ruled and we would go to america. In america doctors were different and brilliant and always doing research with money that was collected on televisi television. And america, my father promised. I need to make sure that i pronounce it the italian way. I always believed everything my father said. I wasnt sure how far america was or how we would get there, but if that is where my father wanted to take me, that is where i would go. We do make it to america and within a month, i was admitted into the hospital for special surgery. My father came before us said he could get everything arranged a. We are waiting still in the admission area and finally a nurse appeared and was pushing a wheelchair. My father stood and stared. I was sure he was telling her we didnt need a wheelchair because he could carry me. The nurse didnt understand or agree and pushed a wheelchair right up to me and smiled. I smiled back lifting myself with my arms with a swinging motion i managed to sit in it. I have never used a wheelchair before i had never even seen one but the feeling of moving on wheels was familiar. My mother pushed me and my baby carriage and when i started middle school, my father bought me a bicycle with training wheels and added a back to the seat with a handle so i could be pushed. Skipping ahead a little bit. My father tells me dont be afraid of the chair it is only until they cure you. I wasnt afraid. As the nurse pushed me, i savored every precious second of the ride. My parents had to walk fast to keep up. I couldnt keep my hands from moving down to the push brooms knowing instinctively what they were for. The nurse must have guessed i was itching to push myself because somewhere in the middle of the long corridor she let go of the push handles and pointed straight ahead. Go, she said. I knew exactly what she meant and i knew exactly what to do. Without hesitation, i took off, arms pumping, wheels turning. For the first time in my life, i was moving on my own, no one carrying me, no one pushing me. I could go straight ahead or curve to the right or the left. I could go full speed or slow down to left my parents catch up, stop and then turned around to see how far i got into them go again. That day in a long corridor in the american hospital, i fell in love with the wheelchair. It was a heavy, ugly hospital wheelchair, but i loved it, arms pumping, wheels turning, go on my way, go on my way to start my new life in america. I must say until now i do still love the wheelchair and there is never a day that goes by when someone doesnt say to me when are you going to get out of that chair and i say i want to stay in this chair. Why should i get out of it. How long do you have to be in it . I said i hope a long time, i am not planning to die anytime soon. [laughter] but yes, most people in society see it as something not that anyone would want. They dont even want to mention that sometimes but its certainly a tool of great liberation for so many of us. It was in the hospital for the first time i met other disabled kids because in the town in sicily i was totally isolated. It was such a small town, there were no other disabled people around and i was just. Places, i wasnt really. That far. I thought i was the only one really. I made friends right away when i was in the hospital. They put me on this floor at the hospital for special surgery and there someone here who remembers those days. Susan. I remember you were susan gordon ryan. I made friends right away and i was ecstatic. In mississippi i thought i was the only crippled girl in the world and here i found myself surrounded by so many disabled girls and boys. The first english words i learned were difficult for me to pronounce, cerebral palsy, muscular dystrophy, spinal muscular atrophy. I was glad i found out i could use acronyms. [laughter] the names of other disabilities sounded italian and were easier to pronounce and remember. [inaudible] [laughter] [inaudible] one of my friends was offended because the disability with cerebral palsy. I told it how easy it was for me to understand her because her speech was wonderfully slurred so i grasped a lot of what she said why am i couldnt understand the other kids who spoke too fast. I was glad that in english my disability was called the same as it was in italian, polio. I dont know what i would have done if it had one of those hard to pronounce names. I figured polio was the best disability for me. [laughter] im trying to show how natural it is to start seeing disability not in such a negative way. In the hospital the doctors, should i read this may be. In the hospitals that doctors would come around and do their rounds and they usually didnt even talk to us, they talk to each other. You are laughing. [laughter] my roommate can they could be in a room with a girl whose family was from sicily and spoke a bit of sicily in so we were able to communicate because i didnt know a word of english. Thats where i learned english really, in the hospital. So the doctors would come around and i didnt know what they were talking about and i would say what are they saying, i would ask her, what did they say about me. I dont know what they said about you. I dont know what they said about me either. I dont understand them. They are not speaking english, they are talking medical. I wanted the american doctors to acknowledge the. They noticed how grown up i was and how quickly i was learning english. I wanted to get their attention by saying something intelligent to them. What can i say to the doctors, i asked rosa. You can say fuck you. [laughter] what does that mean . His wife with italians say when they meet each other. That seemed like the appropriate thing to say to the american doctors. And it was easy enough for me to pronounce. So the next morning when they stood around my bed i gave the american doctors my biggest smile and careful to pronounce it correctly i said fuck you. [laughter] one of the older more important looking doctors was talking, stopped midsentence with a look of shock on his face wasnt what i had expected. The doctors seemed shocked though the younger ones also seemed amused and one was trying hard not to laugh. I knew that rosa tricked me. I wondered what i had said. I looked towards her at her head was under the blanket. I wanted to pull the covers over my head also been the important looking doctors started talking again and all the others turned to listen to him. They talked to one another a little longer as if i wasnt there then walked out of the room. I expected everyone to laugh and make fun of me but instead, the kids treated me as if i were a hero. You said fuck you to the doctors i wish i had the guts to do that. It didnt matter to them that i didnt know what i was saying. [laughter] [applause] im going to keep reading a little bit, and a if she tells me i shouldnt read so much, i will stop or skip ahead. Lets see. In the hospital i need a girl that becomes my best friend. Shes a very important person in my life and a pivotal character really in the buck book. I wont say too much. We would do what teenage girls would do. We would put on makeup and fix our hair. In the hospital the kids are wondering how much longer do i have. In the evening we always have parties and they would come to listen to records. We would chip in and order pizza or chinese food. We would be lip syncing and licking sauce off of our fingers or wiping it on one anothers cast. We would be laughinweve been lg and chasing one another and doing the twist and mashed potato in our wheelchairs. We may not have looked like teenagers on american grandstand, but he sure could dance. Im going to skip this part but its in this place i started learning about the Civil Rights Movement and i was mesmerized by the story of rosa parks who refused to sit in the back of the bus. I wished i could be a freedom rider and i pictured myself on a bus sitting next to marcus, my favorite tutor, a very handsome tutor. I wouldnt be afraid to get arrested. I told myself, i would be proud to go to jail with doctor king, nor would i be afraid of the ku klux klan. I pictured myself holding marcus is hand confronting a man in a white hood. Younger students from different colleges would come and mentor the children. I didnt get to go to school until the library last term of high school. Many things will happen in between here, some very sad, some exciting and one of the exciting things is i hooked up with a disability Rights Movement just starting a. Some of you are nodding, through the board of education denied a license to teach because she used a wheelchair. It was amazing to discover how similar our experiences were once we started comparing notes. Until then we considered them to be the problem. We believed we were supposed to cope as best we can. We realized the disability itself wasnt that big of a deal for us. We all learned to accept our physical limitations. What made life difficult wasnt the disability but the lack of services and support, the lack of accessibility and the stereotypical ways in which we were treated, dot pity the. I wrote my thoughts down in a notebook. Its not my fault that i am disabled yet ive been made to feel that it is. Its never made me unhappy, people need to be unhappy. Ever since i was a little girl, people made me feel i was no good because i was disabled by the sicilian women, the non scum of the doctors who couldnt fix the, my fellow students and prospective employers and even my own parents. As i wrote, my tears fell and stained pages, tears of anger, relief and new hope. I go to my first demonstration which was for my sign was just a black magic marker on the white board and said if you think we are helpless, weve got news for you man. We can fight for our rights just as well as you can. That was my very first sign. And lots of signs ive made in my life to add to that. Should i keep reading a little more or stop . Then i started teaching, im going to skip all the. I want you to buy the book and read it. Im really discovering the disability Rights Movement. I mean, we didnt even know, we didnt call it the disability Rights Movement. It was just a bunch of us getting together a. At the time i remember i was shy and kind of conflicted. I would go to these meetings but not say a word so i would go home and write it down for myself. The idea is not because i cant walk but i cant get into this building. Thats what started the Disability Movement so i just want to make that point. I was going to raise a lot more but i think im going to go to the end. Most of you knew my husband who passed away four months ago. We met at the organization and have been members. We fought to get that law passed and we understand it doesnt have a Compliance Mechanism built into it. We were chosen to organize the march, and im trying to find this one. One. Let me see where it is. We would have these meetings and everybody would come to the meetings as we kept organizing to do this march and we would sit together a and he would say i cant get close enough to you. After the meeting i came out of the room right behind him, the crowd moving at a snails pace and then he broke away from the others and i followed him into a dark room and we nearly collided as we gravitated towards each other. I couldnt see him, but i felt his arms closing around me surprisingly strong. They were transported and i lost my awareness of time and space. Im not going to read the sexy scenes. I think you should buy the book and read all that. [laughter] its time for qanda. Im getting said. I always considered myself so lucky my husband and i considered ourselves lucky. He even had a tshirt that said im the luckiest man in the world and i considere consider e luckiest woman in the world, and actually at the very end of the book in the acknowledgments i say when they announce he passed away he took last breath march 13, just four months ago even if my heart is breaking i still consider myself the luckiest woman in the world. Thank you. [applause] when they asked me to coordinate the qanda, they didnt tell me that i had to follow that. But its all of you that have to follow that so we do have time for a brief qanda. I will ask you to pa today to ar questions until theyve given a microphone to use a weekend all here you. I see a hand raised there and theres microphones. Did you end up with their work e to bring peace to the fact your parents never really accepted that you were disabled . I dont want to give away too much. Thank you. I need to make clear i dont want the book to end. [inaudible] i know a lot of you are reading it and i see you nodding. It also becomes a symbol of that place. Those that are disabled may feel we are the only ones in the world. Its got really bad place. I talked about the atmosphere there. So i went back to italy many times as an adult and i was teaching italian for many years i taught italian so i did go back many times, but i didnt want to go back. I went once and had a very bad experience reliving my childhood and so at the end, i go back and it was a very positive experience. I dont want to ruin or spoil. I felt the need to go back there and relive that childhood and i thought i was strong now as an adult and middleaged woman when i went. You will see in the book that i certainly never blame my parents for anything. They love me so much and i love them so much and my father wanted me to be cured because he loved me. He didnt realize that to me what i was hearing this i was disabled i wasnt a daughter he wanted. They dont quite understand that they are hurting them by saying certain things. Just the fact my father always wanted me to be cured made me feel i wasnt okay the way i was. But that something was wrong with me and if that wasnt with my father wanted. Of course as i grew and matured, i understood. But there was always that feeling. I learned to deal with that feelinwith thatfeeling so that l that it was a failure for the rest of my life. I came to peace with it and im glad i went back and im hoping to go back next year. But [inaudible] thats a good question. I should explain because i think i mentioned this. I said i was going back and forth and people are nodding because some of the older people here you are a young man. Some of us know what it is and it is in white plains. Its like a nursing home i guess, but it was a pretty nice place. They had children and teenagers and it was a rehab place. I owe us there after i had surgery on my back. I dont want to give away too much. That is when i was sent to. I should have explained what it was. Its a rehab kind of hospital. I should tell you im going to be on her show. Its been about 17 years. A feminist show between seven and 8 p. M. And every thursday. Thank you. The book was a revelation and so deeply moving. Its brilliant you were able to go back and just put it all out there its just a marvelous book and im honored that you will be on tomorrow. What is next to be done, what were the major issues that i was so relatively unaware of quiet it looked like okay we are going to change the world all we have to do is change this and the fights never end so we are a long way in every sense of the word. Theres still so much work to do for basic access, and not just access for those of us to use wheelchairs, but people with all different types of disabilities. When you cannot go somewhere or read some thing, the feeling you have is that you are not important. You dont matter, you are not wanted. Thats why in my speech at the parade our pride is the same as all of those that are not want wanted. The fact that so many of our people need Certain Services like help getting in and out of bed. To get that kind of help unless you are rich enough to stay out of pocket you have no other choice but to teach us to be poor in order to qualify for medicaid. With what w would we call longm services and support. You are then condemned to a life of poverty even though there is so many ways. Theres always ways to get out of the system so you can have some money and still receive your services. Theres all these financials that you are kind of forced into doing. It should be our right to. [applause] i think this will be our last question. I could go on but i will tell you more on your show. Your decision to get married and what the cost you. When we met, he was already on medicaid. He had been in the Film Industry for 20 years. He was diagnosed with primary progressive grossest at 4yearsold and it was progressing very rapidly in the beginning. He thought he was well covered. He has excellent private insurance, then he applied for social security, disability and two years after, theres always a twoyear period, he got medicare and his primary insurance became secondary. He thought it was terrible, he thought he was going to die because it was progressing so quickly. He thought he was taking care of, but he did hav that he woule care he needed but found out when he started needing help getting in and out of bed, getting dressed and getting washed and all that but that was not covered by medicare or private insurance. He was lucky and when i say lucky im being a bit sarcastic, his wife, not me, he had been married before me, but he was paying Child Support and that made him eligible for medicaid. For 20 years we didnt. We didnt need that kind of hope. Im able to tend to my personal care therefore because i didnt need that kind of help and wasnt forced to get on medicaid, i was forced to work and make as much money as i could but i didnt make that much because teachers dont make that much bu of it was able to e up for retirement, whatever it is youre supposed to do in the u. S. , whatever they call the american dream. I had a little savings, income resources that would have made him ineligible so for so many years we did not marry. We lived in sin. [laughter] in 2013, occupying made us so bold we thought we could do everything. We got married. Somethings changed and the main thing is that his multiple sclerosis progress to the point where he now was considered homebound and was in need of Skilled Services. If you satisfy those conditions, then medicare comes in and pays for very limited, nothing like medicaid, but very limited longterm care. Thats when we got married because we were able to get these hours and we got more than anybody we know because we are activists and we know how to fight for what he wants and we got the right agencies, but still it wasnt enough. We have to supplement so we spent a lot of money paying for the other hours that we needed. Gabriel is back here. Do you want to stand up. He was a Home Health Aide for the last five and a half years of dannys life, six and a half years . I always thought the recent medicare at that point will pay is because they figure if you are homebound and in need of Skilled Services that you are not going to live that long but he fooled them and they were good years. We managed to go to quite a few demonstrations. Thats how we got married. It cost us a lot and now money is gone and when i start needing those services, i may be in trouble. I dont know yet. Thank you for asking. We are out of time for questions. One more. Okay. One more question. Are you or have you going to read the audio version of this book you think i should do it myself . Absolutely. [applause] with my accent . I dont know. Theres my publisher. I know we are looking into doing an audio book. I dont know if i can read the whole book myself. I am game. [applause] i didnt know a word of english devices labeled with a language difficulty. Through school there was always that the stigma and i felt i didnt have english well enough so i still have those doubts and especially when im writing and the words come to me in italian and i cant find the exact word for what i want to say and i could say it in italian in the same writing in italian the same thing