Visionary Voices : Interview with Janet Evans
July 26, 2013
CHAPTER ONE: CHILDHOOD AND FAMILY
13:59:07:15 –13:59:45:00
Q. My name is Lisa Sonneborn. I’m interviewing Janet Evans at the Double Tree Hotel in Pittsburgh, Pennsylvania on July 26, 2013. Um, also present is our videographer, Ginger Jolly. And, Janet, do I have your permission to being our interview?
A. Yes.
Q. Thank you. I wondered if you could tell me your name and current title or occupation.
A. My name is Janet Evans and I think I’m the biggest advocate for people with disability all over the city of Pittsburgh.
13:59:46:05 –14:00:04:00
Q. Janet, can you tell me when and where you were born?
A. I was born in Pittsburgh, PA, August 11, 1953 in Children’s, now in Southside Hospital.
14:00:10:15 –14:00:52:10
Q. Okay. Janet, I wanted to ask you a bit about your family and I’m wondering if you can tell me, firstly, about your father starting with his name.
A. My dad’s name was James Byron Riddell. He had three other brothers and they’re, uh, that whole side of the family has passed. Anyways, he was in the Air Force, as I knew him, and I only saw him very rarely when he was home.
14:00:53:25 - 14:01:19:00
Q. And can you tell me about your mother, again, starting with her name?
A. Her name was Dorothy Jean Elcock-Riddell. She worked as a secretary for the US Steel but when I was born she had to quit, so.
14:01:32:00–14:02:04:10
Q.Janet, can you tell me if you had brothers and sisters?
A. I had, actually there was five siblings. The first-born was still born. I was born next. I had another brother and two other sisters and that’s all I really know.
14:02:04:20–14:02:33:10
Q. When you were growing up were you close to your siblings?
A. Um, my brother and my sister and the youngest one wasn’t born yet but I was close to Jimmy and Judy at the time but I was only a kid then.
14:02:36:20 –14:05:18:10
Q. How would you describe your family?
A. Um, I guess like any other family cause when I was growing up disability didn’t enter my mind. I knew I was different but how and why I don’t know. Um, I guess my parents, well, my dad was away a lot and my mom, and I guess her friends helped take care of us. I really don’t remember that much about growing up. Only thing I remember is, when we were in Pittsburgh, I was going to a special needs school and the reason why we moved to California is the cabs went on strike in Pittsburgh* when I was seven, so we went to California, I guess, to live. And then I went to the hospital when I was nine, eight or nine, I didn’t know my little sister was born till later but then when I was in the hospital, um, from September of ’62 to, um, June of ’63, I was in that long, I didn’t know really why but then I started learning things about myself. And when I was going home to Philadelphia, from California, to Pittsburgh, I didn’t know my brother had passed. At that time I didn’t know why cause nobody wanted to talk about it. But there was a lot of things I figured out for myself. Okay, so… My family life, I guess, was so-so. I can’t really comment on it because I don’t remember.
14:05:21:20 –14:05:56:10
Q. So, Janet, you had mentioned that you were aware that you had a disability, that you were a little different, perhaps, from your siblings. Um, what is your disability?
A. My disability is cerebral palsy, spastic in all four limbs. As a child they had a label on it with some mental retardation. I later had it changed.
14:05:58:00 –14:06:54:05
Q. Can you tell me, Janet, was your disability apparent to your parents and doctors? Did you know from birth or was it diagnosed later?
A. Well, not at birth, four months after I was born. Something wasn’t right to my mom so she took me to a specialist named Dr. Chance and they’re the ones that diagnosed cerebral palsy. And what cerebral palsy is, a condition where the air was cut off from the brain for a short time and I guess when I was born the umbilical cord was wrapped around my neck. That’s the only thing I know.
14:06:56:15 –14:08:54:25
Q. Certainly when you were born, in the early 1950s, um, professionals, doctors often advised parents who had a child with a disability to place them outside of the home, to place them in institutions. Did your parents - were your parents advised to do that by doctors or any one?
A. What I was able to gather was there was a baby, home for babies, um, I guess, when my dad brought his family back to Pittsburgh and I was there for maybe 15 months and then he went traveling again to, I guess, Spokane, Washington. And that’s the only thing I think of but I, it didn’t really bother me cause I didn’t know any better but as a child I was sort of like a happy child. You know, I was, my mother thought I was strange, I didn’t like sweets, no cookies, no cake, ice cream yes but I didn’t like all the candy or nothing. But I guess one thing about me, I knew my TV. TV was coming into being, my parent never bought a TV magazine cause I would tell them what was on.
14:08:55:10 –14:11:04:15
Q. Janet, as a child, again, in 1953 were, or in the mid and late 1950s schools weren’t always open to kids with disabilities but did you have the opportunity to go to school?
A. Yeah. There was a pioneer school in Brookline in Pittsburgh and as soon I got th-, I got there and the next thing I knew the cabbies went on strike but what I remember of the school, it wasn’t very long because I think I was placed in kindergarten which I don’t know why because I think I was - well I was six to seven and by then I know you’re supposed to be in first grade but since I was a special needs child, um, I was stuck in kindergarten but there was a physical therapist named Dr. Doraty and she was the physical therapist there. I didn’t know her that long, all I knew that she was a nice lady. After, the, um, cabbies went on strike I was put in a school in Philadelphia, um, it was called the Home for the Merciful Savior (HMS), 4400 Baltimore Avenue, Philadelphia. I think it was in the West Chester area of Philadelphia. So-.
14:11:06:10 –14:11:22:15
Q. Did your parents tell you, Janet, why they were sending you to school in Philadelphia?
A. No, they didn’t. I found out the reason when I got older but I don’t need to talk about that now.
14:11:23:15 –14:15:39:15
Q. So, what was it like for you, um, to leave home and go to a school in Philadelphia, which is reasonably far away from Pittsburgh? Was it-?
A. I thought it was because Miss Doraty worked there as a physical therapist and she was transferred and I was always under the impression that Dr. Chance was there also, I guess to either study me, keep an eye on me, I don’t know. They thought maybe I’d get better schooling or better therapy. Who knows? But I do know this, there, while I was there it was a school from zero to 12 years old and many people with disabilities were there and I was placed on the older children’s wing and there, like I said, I learned how to feed a child that couldn’t feed himself. He was more disabled than I was. There was a speech therapist named Miss Gillman and at the age of 11 she had a Bible study class on Sundays and at first I refused but then I started going. And then she started, like, a little club of the older folks and I turned out to be the president of the group. At first I didn’t understand what that meant but I do now. It was my training ground on how to learn to live with a lot of disabilities and knowing me I was the jokester of the bunch. And also one weekend in the spring our maintenance man brought his dog and wanted me to watch it over the weekend and I said yeah because I had a turtle and I had, um, two other roommates and we still keep in touch to this day. It’s weird but only I turned out more of a successful life than what they have. But at the age of 12 I was given a chance to either stay there and have my education and physical therapy there or go back to Pittsburgh and to me family was important. Even though my brother was gone I wondered about my aunt, my grandmothers, you know, my mom and dad, I wanted to be closer because I have a sense of family and I didn’t know why I was always put there and they never really came to see me. That’s what upset me the most but I chose to come back to Pittsburgh and 18 hours later I was shipped off into Allegheny Valley School (AVS), the first school.
14:15:47:15 –14:20:09:10
Q. Janet, you had talked about your family, you described your parents and your siblings and also had stated that you didn’t really see family a lot when you were in school in Philadelphia, um, but were their other family members that you felt connected with or who were special to you?
A. My dad’s mom, we called her ‘Big Grandma’. She was awfully generous but she cared a lot about me because she was the one that babysat me most of the time. She used to play classical music and I learned to watch Jeopardy every day and I kind of knew all the answers after a while. But I was like, um, maybe four or five years old when she, it was crazy, it was really nice cause there was no other children around too much. I mean, once in a while, we had family picnics or stuff like that. One time I remember we had a family dinner and, this is when I was a little older I’d say about six, seven, and I knew I was different but she always was thinking about how could I get [to], hold the plate with my hand and I told her I’d just use my finger. And anyway, way she got me a little, and this __ stick with a flat thing to hold in my hand and push the food onto my spoon or fork. And she was always kind and I can explain more about her later but that’s one thing I do remember is the music and the TV set. And, um, I don’t know, she was just a nice grandmother. Now my mom’s mom, her name was Anna Marie, she said to my parents, well, my mom mainly, if you have children you’re gonna watch ‘em not me but I only stayed with her like once in a blue moon. I mean by this time I was starting to know little things. Even though my brother had died, like I said earlier, when I was with him I knew he was special but I didn’t know the name of it at that time because I was the only one that could talk with him and he knew wha-, who I was and I guess he knew I was his big sister but he was slow. And when I left to go to the hospital for the operation, I don’t know but some reason I just said okay you watch mommy and I’ll be back. He was a sweet child, he was two years younger than I was and I loved him and never forgot him, even at the age of 60 now I still haven’t forgot him. But I have all my answers and what happened to him and things like that.
CHAPTER TWO: MOVE TO ALLEGHENY VALLEY SCHOOL
14:20:09:20 – 14:22:03:20
A. Now we’re going to AVS - Allegheny Valley School.
Q. Yes, thank you for taking us back there. You said that you left school in Philadelphia, you returned home only for about 18 hours.
A. Yeah. And I was wondering what was that all about cause I thought I’m gonna live with my mom and dad and probably my two sisters. Well, that never came about and it made me sad. But then I would’ve, I had a lot of questions too like why am I going into the school and little did I know later, about eight years later, nine years I found out why but I’ll tell you later about that one. But anyway, the first couple years of AVS living it was a bunch of older kids they had just built a new wing onto the school for broken homes, children with disabilities and I guess some of the more retarded. Some was from, had a disability but didn’t need to be there and I was, like, wondering: okay why am I here, to get schooling or to get therapy? Why am I here,‘cause I knew I did not belong there.
14:22:03:25 –14:22:28:10
Q. Did you ask your parents that question, Janet?
A. When I saw them I did.
Q. Did you see them often?
A. No. Only for my birthday and maybe in the spring and my birthday’s in August so that’s, maybe once a season to, it all depends.
14:22:28:15 –14:22:55:10
Q. And when you asked them why you were there what would they say?
A. Um, they couldn’t take care of me. I later found out before I left that it was in my records that the courts had taken me off the parents because of what my mom did and I’m not gonna go into that.
14:22:57:10 –14:25:08:05
Q. Well, tell me a little bit about AVS. Um, you had started to tell me a bit about the physical layout of the school.
A. Okay, the school had three floors. The original, the original name was the Home for Babies and I think when they got the funding they changed it to Alleghany Valley school because they built the west wing and the east wing, each had three floors. The west wing, no, second floor was designated, the third floor was designated for children who were highly function but had a disability or something was wrong with them. Second floor was designated as the ones that was severely disabled, okay. So when we had a chance to move either on east or west the east wing was for the guys and the west wing was for the girls. Excuse me. Each side had about 16 children on but we were all scheduled to get up at six, get dressed, well, go to the bathroom, get dressed, get breakfast and then go to classes and then go to lunch, back upstairs and maybe take a nap or go back down to school or physical therapy and then dinner time, go back ___ and then after dinner watch a little TV and then get bathed and get ready for bed.
14:25:08:15 –14:26:30:15
Q. So, I wonder if I could ask you a few things about that experience. For instance did you have the freedom to choose what you wanted to wear, what you wanted to eat at dinner-time?
A. We had no choices in the meals that we could eat. It was either, for breakfast had the food groups, you know, the eggs for protein, um, cereal, toast, bacon, sausage. It depended on what they had for all of us and we always had juice or milk or water if we wanted but as we got older and we moved into the wings they even had coffee, tea. But I was advised by my foster grandfather, I adopted him, he said drink some coffee, he said drink it plain, that will grow, that will make you okay there’s no calories. I said I don’t even like coffee.
14:26:36:24 –14:31:34:00
A.I’m jumping ahead because, because I gotta tell you about living on the third floor and then moving over to the west wing.
Q. You do, but I want to ask you one question before that, if I can?
A.Yeah.
Q. And that is, if you can remember your first day at AVS. What was that like?
A. Oh, I’ll never forget it. Okay. When my parents took me over to AVS I met this nurse named Miss Fieth, I thought she was mean but she was nice after a while. Anyways, I said goodbye to my parents and I think we went in the main doors and I wasn’t walking, I wasn’t walking at the time, I was still, you know, I had to be carried or in a wheelchair. So Miss Fieth says , “you’ll like it here.” I says, “Why, what’s going on?” “Well”, she says, “you’ll be here for a while.” I said,“I don’t belong here cause I’m not retarded”. She says,“Well, you’ll be going to school, school here.” I said,“Okay” and she also said it would be with other girls. I said,“Okay”. She goes,“You get three meals a day, you have your own locker, you have your own bed.” I said,“Oh, okay.” And she goes,“We do things by the schedule.” I said,“Okay”, you know, I kind of didn’t like what was going down but then she said,“Oh, you’ll be getting out of here in a couple days.” I went,“Yeah, sure”. You know, I’m not no dummy but then I didn’t know what I was put in to. But anyways, I had my meal with gi-, a bunch of kids, I still call them kids even though most of them were a little younger than I was. And anyhow, there was some with, um, muscular dystrophy, broken homes, emotional as well as physical cause I wasn’t the only one. Some had come from, like I said, broken home or they was placed in a home, they were all transferred to AVS and I said okay, what’s ‘gonna go on. And one thing I did remember, the second day that I was there I had taken a nap and when I was waking up here they were pulling out a needle out of me. And I says well, what’s going on and I don’t remember the answer, all I know is, uh, I had a habit of if I was in a deep sleep I didn’t feel nothing except when they were pulling something out of my arm and I’m thinking what is going on. And anyways, I remember the first night, they had to undress me in the hallway, I did not like that at all. Even though the other, everybody was in their TV room, it was a big room where they all could watch TV and I didn’t really care for that. And I questioned that and they said well we do this all the time. I said I see that because the bathroom was narrow and there was hardly any room and it took two people to put me in this high bathtub.