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?
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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?
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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
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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
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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.
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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
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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.
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14:31:34:15 – 14:37:11:15
Q. So I just want to be clear, Janet, what you’re saying is they were changing you in hallway in
view of people who were in the TV room?
A. I don’t remember if the door was closed or not. All I could focus on was why are they doing
this, you know, and even though they did put a sheet on me I was like I don’t like this, you
know, why can’t they undress me in the bathroom. But then again the bathroom and the sinks
were too narrow. The little hallway was about the space of a wheelchair and I didn’t like that,
where in the big hall everything was wide open and anybody can come off the elevator and see
what was going on. But I bet you the next day I was gonna say something and they did change
their policy a little bit where if you went into one of the wards you can get changed, put a towel
around you and then get into the shower and that I had changed. And if you started a monthly
period, teach the older girls what to expect because they would help me get on and off the
toilet, the big kids would. And the older girl, when they told me, “There’s a drop” and I says,
“Go get the nurse and give me a pad”, and I showed her how to put it on me and it was a little
difficult but it, you know, I didn’t quite understand, but one of the male aides, he was kind
enough, ‘cause I was really nervous about it and he says, “Will you calm down.” He goes, “My
wife has a period so I know how you feel and we’ll do it this way, when I work with you we’ll get
a shower and we’ll get all cleaned up and you don’t have to worry about it.” And he was nice
about it. I liked him over a lot of the other aides because he knew what I was going through
and, um, we [took] care of that over the months. And so, basically, I learned that we had gym
first ‘cause we had to rotate. All the bigger kids had gym in the morning and we had classes in
the afternoon and I didn’t like that at all because they had substitute teachers that only taught
so much and I ended up help, helping the kids who were mentally retarded and you had to
teach them over and over things and then I got the idea, could this be one thing that was the
matter with my brother. Was he mentally retarded? But I had to wait years before that that I
could ask someone. Anyways, as the years started progressing all the kids started liking me
cause I was the number one instigator and the staff did not know this because I would tell them
to fill up water jugs, put them on the porch, hold on, I’m getting ahead of myself. Get water
bottles or water balloons and throw it at the aides on the gym, on the gym and I says when you
playing dodge ball once in a while ___ but don’t hit them hard. I was an instigator. But at least
the staff, they played music on ___ or I was listening, I used, I was used to listening to WJAS or
classical music and, like I said, I put on skates and I rolled, had someone push me in the
wheelchair. Yeah, we formed a basketball team. I kept score.
CHAPTER THREE: JANET’S FIGHT TO FURTHER HER EDUCATION
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14:37:57:25 – 14:39:25:00
Q. Janet while you were at AVS did you have the opportunity to continue your education?
A. Um, very little because I was stuck on the third grade level. I could read, you know, because
of so many things I learned in Philadelphia but none of the school teachers over that grade, I
guess because I was mainly self-taught after I went in there cause when I discovered schooling
was individualized but then it wasn’t because mo-, I think the reason why I said I was helping to
teach people with retardation is they couldn’t really find anybody for me so then I started
reading books people gave me. You know, like romance, mysteries and stuff like that but then
Channel 13 started having educational stuff on their TV, on their station. Okay, remind me
what’s next.
14:39:24:15 – 14:42:45:10
Q. That’s okay. But I’m curious you said Channel 13 had some educational programing. Is that
something that you watched and helped-?
A. Well, they had a lot of history stuff, plays and not basic education but anyways, the schooling
just wasn’t what I thought it was and it kind of made me mad cause I thought I was gonna get
an education which was not, almost null and here I was ending up teaching the kids what I
knew. I mean I knew how to count and all that cause I had that in Philadelphia but nothing
really changed in the first AVS but in the second AVS that’s where everything started changing,
when the 504 [regulations] came into law and I was told that none of the people with
disabilities were gonna move over to AVS and I said, “That is wrong, that is real wrong.” So I
wrote a letter to Mr. Bouterball at the time and I said, “You know, you’re building this real neat
school, why can’t you make it accessible? The Section 504 says if you get Federal funding you
should make one entrance way accessible and also the bathrooms.” So then I said, “Why can’t
you put a ramp in there?” So the next thing I knew they were building, they were building the
building and they put a ramp in cottage one, they made the gym accessible, they even put a
green house on the campus and that campus had a sort of a college there too and I found
myself there and that’s where I got some freedoms. I was doing what I needed to do, the
intermediate came into being around ’74, ’75 and they asked me what do you want to do. I
said all I want to do is pass the GED and they go “How?”. I said, “Well here’s a book that my
grandmother, my foster grandmother”, which I wasn’t supposed to have and I got her anyway.
14:42:46:05 – 14:46:34:15
Q. Janet you’re mentioning foster grandparents. Can you tell me about that?
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A. All right, the foster grandparents came into being, I think, in ’74, ’75. All the children on the
east and west wing got it but I was a little bit too smart so they figured I didn’t deserve it and to
me that was wrong. Well, here a couple weeks later I got a foster grandparent, a retired
teacher, and she’s the one that [said] “Well, how can I help you.’ I said, “You know the
education programs they had on 13?” She goes, “Yeah, very familiar.” “Well, one of the
programs is the General Education Developer, I want that.” She goes, “Why?” “Well there’s
five subjects that I can learn from and I just want to pass the test to prove to everybody I’m not
retarded”, and she got it. She got me the book, helped me to study a little bit and then I moved
to the new AVS where I didn’t have her no more and I had to depend on being teacher from the
intermediate unit. I was like, yeah, so guess what, she helped me study on all five of the books
in there and I had, um, trouble with the math, trouble with the English but everything else I was
good at. So June, I think, of ’74, I think, or ’75 I failed and I was like really upset, had to be ’74.
Yeah, because I waited a month and took the whole test again and here I didn’t study that
much but guess what, I passed. And when the program director came to pick me up we had
betted a spaghetti dinner and I said, for when I seen him I said, “I guess I get my spaghetti
dinner”. He goes, “What are you talking about?” I said, “I passed”. And he was the program
director for all the older children and we did all kinds of things, but on my own I start taking
pictures. Some of them I still have but they’re buried deep in my ___but I only brought one or a
couple with me today. But anyway, then things started happening.
14:46:54:07 – 14:47:08:10
Q. How long were you at AVS?
A. I was at AVS from February 2, 1966 to March 29th of ’76.
14:47:09:05 – 14:51:13:05
Q. You were there for 10 years. I’m wondering how often you saw family, your parents, your
siblings, maybe even your grandmother.
A. Um, let’s say, maybe four times, five times a year. I’d like to tell you something weird that
happened. In the, in the, February on Valentine’s Day I got a letter from my mom. My foster
grandparents was with me and some of the staff and I got this strange letter saying that, um,
my grandfather was in touch with my grandmother and we wanted to let you know about her.
Little did I know or little did they know I had this psychic power, I knew my grandfather and
what was funny about it he had been contacting me because what was strange was about it,
when I seen my parents later on because he wanted to come back and live with my
grandmother and they said “no” and I told them that I knew he was going to be coming back. It
was weird but I couldn’t stop thinking about him ‘cause I never heard about him. Anyways the
spring of ’75 my parents came to see me and I thought that was unusual cause it wasn’t their
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time and then I told them, “I know why you’re here.” They go, “why?” “You’re here to tell me
that my grandfather had died.” I knew it before they did, because him and I weren’t
communicating no more. They were dumbfounded. I was the psychic one in the family and
then they knew I wasn’t kidding because I made several other predictions. What I told them
was, I wasn’t retarded and someday I’ll be getting out of that school and that’s when they said I
was gonna stay there. I didn’t argue with them. All I said, “You’ll see” and I saw them for my
birthday and I think Christmas that year. Now and then I just talk to them.
14:51:14:05 – 14:51:47:10
Q. Did you see your siblings or your grandmother?
A. Um, I didn’t see my grandmother. No, but I didn’t-- I saw my two sisters off and on between
’74 and ’75 cause they didn’t like the school and I think my mom was going through some
trouble, I don’t know. But, um, that’s my mom.
14:51:47:25 – 14:58:41:25
Q. So, in 1975, Janet, life changed for you dramatically, um, starting with a trip to the hospital
and I wondered if you could tell me about that?
A. Okay. January of ’75 school made arrangements I’m to have an operation cause I, they didn’t
want my legs to be closed all the time and I was growing and I was getting older and things
were starting to happen, I guess, or they were afraid. And so I said- So as the girl was taking me
to the hospital I seen this folder and I said “You mind”? And she goes “no”. So I opened it up
and read the diagnosis and closed it back up said “Thank you”. She goes, “Why are you doing
that?” I said, “You’ll find out.” Okay, no sooner that they put me in my room I think about in
the evening, that evening a bunch of doctors came into the room. Had to be 25 to 30 and I
says, um, who is my doctor. This little old man came and he says I’m Dr. Rosenberg, I’m your
doctor. I said, “Well, do me a favor. Please read my diagnosis out loud.” He says, “I’m not.” I
says, “You got my permission, read it.” He says, “Well, you have cerebral palsy, spastic in all
four limbs with mild retardation.” I said, “I don’t think I’m retarded” and he goes “Well we’ll
see.” He goes, “I want you to say your alphabet backwards.” So I went “Y, Z, X,” you know all
the way up to “N” and he goes “Okay, you did that right, now you count from a thousand
backwards”, and I did that. And he says, “Sometimes when children are born or tested they are
diagnosed with mild retardation and I see that she might’ve been misdiagnosed.” So he goes
“okay, after the operation we’ll start testing you.” So I got the operation the next day and here,
when I was woken up, they were starting to test me with pictures and I had to tell the shadow
where it was and stuff. I remember all that and once I got a little bit better they started doing
things with me and that was the intellectual, intelligent test and two weeks later they [Dr.
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Rosenberg] go, “Janet, you’re no more retarded than my little finger.” I said, “Thanks. Now I
can get out of that school.”
I went back and at that time I talked to somebody from United Cerebral Palsy and they said
you’re still ‘gonna have a community living arrangement. They go, “Yeah, we’re looking for
candidates.” I say, “You’re looking at one right now.” And so I had a talk with my case-worker
at the time and I says, “I really want to get out of here” and they go, “You have to have a
place.” I said, “For everything I’ve seen on the walls, the Bill of Rights, what you need to get out
of here I already knew and I’m already doing that. Why would I be here learning how to cook,
learning how to be on my own and I can’t get out of here?” I said, “I’m gonna’ do it.” So,
anyway, I applied for housing and I did this and this and they told me, “Well, the housing
rejected you.” I said, “Oh shoot.” But they said I could move out of AVS cause I had a staffing
and I had to tell the staff that, that I think they faked the test. They go, “why?” Because if I
passed the GED and they I failed the psychological test then how come I’m running their green
house, their ___, have an Avon business helping somebody selling and having two accounts
that add up to $600 and I’m not incompetent as he said I was. And there’s no, and according to
the law if I have someplace to go I can go as long as there’s somebody to supervise me in there.
And guess what? March 29th came and I went goodbye and they took me out to the community
living arrangement.
CHAPTER FOUR: MOVE TO COMMUNTY, MARRIAGE TO HARRY
14:58:42:25 – 15:04:57:25
Q. What do you remember most about that day?
A. Freedom. Now we’re into ’76. That was freedom, that was the freedom year because when
I moved into the community living arrangement they said I would have a roommate. I did get
one at the end of April. May the 8th UCP had scheduled a ballgame with the residents, the
clientele they had, and I happened to go. And so I got home late [the game] was over around
9pm where Tom lived and I said I was staying over cause I don’t feel like calling a cab to go
home, it’s too late at night and there’s nobody there right now. So here a gentleman comes
knocking on the door at 11 o’clock and he - I said, “Come on in.” He came in, says, “Hey man
here’s your chocolate chip cookies” and then he says, “Well, hello there.” I went “Hi, how are
you?” So he goes, “Oh, I’m only gonna stay for five minutes, I’ll get you your coffee [and] I’ll be
out of here.” Guess what, he stayed a half-hour and he was quite taken with me and I, so he
left.
About a week later I went over to see my friend to see what he needed done and he was in the
restroom and I found his phone number, you know how when you’re waiting for something and
you look around to see what you can see, well I found his phone number with the ‘H’. And I
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said, “Thank you.” He goes, “What for?” I said, “You’ll find out.” So Harry came up and Tom
was still in the bathroom so I wanted to get some information out of Harry. I said, “Okay, how
old are you?” And goes, “Guess.” I said, “come on”, I said, “Okay 30.” He goes, “no, I have a
girl, a daughter the same age as you are.” And I said, “How old are you?” He goes, “I’m 49.” I
said, “Okay.” So when my friend got out of the restroom, [I] went down to Harry’s place and I
saw on the telephone there was no number and I said, “I’m gonna get this guy yet.” So I ran on
off the phone number and Harry goes, “Where’d you get that number from” and I said, and he
looks at the friend and he goes, “Did you give it to her?” “No I didn’t give it to her”, and then
Harry remembered, “I know where she got it from, off the TV.” He goes, “You shouldn’t be
snooping around like that.” And I said, “You have a nice apartment” so we set a date up, it was
June 7th, a little less than a month after I met him and I called him up and I says, “I can’t come
over.” He goes, “why?” Well something to one of the residents, there was an accident and I
was asked to stay. So we ended up talking 12 hours and in the 12 hours three things happened,
he asked me to marry him and I said, “Why, I don’t even know you.” He goes, “This phone call
could get expensive” and I said, “Yeah it could but I’ll help pay half.” He goes, “Get out of here”
and the police started knocking on the door because the phone was off the hook. So I said,
“Harry I gotta’ get off because someone knocking on the door again and I don’t want it to be
the police.” Sure enough it was the police. So, and he says, “You okay?” I said, “Look, can’t
anybody talk on the phone for 12 hours.” But anyway I later found out what happened. But
anyway, August I got the rings and asked him, first question I asked was, “Will my finger turn
green?” and then the second question was, “Where are my new shoes?” and Harry says, “I
should take the shoes back and take the rings back. I said I would marry you, so stop it.”
15:05:07:20 – 15:09:22:05
Q. Janet, I’m wondering if you can describe Harry for me. Was he a person with a disability?
Was he not a person with a disability? Was he tall? Was he short? Tell me how you would
describe him.
A. Um, first of all his name is a giveaway. His name was Harry James, his mother named him
that ‘cause he was a twin when he was born. He only weighed one pound but Harry grew up to
look like Peter Falk and also ___. Harry looked exactly like his twin. You know if you know the
character Colombo, Harry was his double down to the glass eye on the left side. Yeah, Harry
had, he was blinded in one eye cause he had a business he had to give up, it was a printing
business and a bucket of ink, hard ink, fell down and hit his right eye, I mean left eye and for a
week he didn’t know it that was in there and he lost the eye but they did get him an eye
transplant. But he was on his way to California and I told my friend, “He ain’t going nowhere.”
He goes, “Why?” “ ’Cause we’re getting married.” He was, “What, I thought you were gonna
marry me.” “Sorry, no. Uh-uhn.” But Harry was a little guy, more like a rag mop or as we called
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it a “short shit”. No he was a short guy about 5’ 4”, 5’ 5”. Anyway, he was a nice gentleman, a
bit of a dry sense of humor, he was funny. All the ladies loved him where we lived. One joke
was he, they had a petition before we were married and a lady went to the office, the front
office while I was, Harry dating me and the lady said, “Will you sign this petition.” He goes,
“well, what’s it for?” And she said, “To keep the young folks out.” He goes, “Well this young
folk [you’re] talking about, I’m marrying her. She’s gonna be my wife ” and that shut the whole
building up. But anyways, moving forward I don’t even visit there three times before I got
married which was right after Thanksgiving. And I told, um, UCP I was getting married, I even
went back to AVS, too, and told them I was getting married. Everybody was shocked, they
thought I was pregnant. I said, “I’m not pregnant. I got married cause I love the guy.” He was
gonna’ take care of me and I never want to come back here again.
15:09:22:10 – 15:11:06:00
Q. Janet, how did your family react, not only, to the news of your marriage but just the idea
that you were now living independently on your own in the community.
A. Okay. I asked the school not to tell my parents anything. I didn’t want them not to say
nothing. I said I would do it on my own. Um, three months out of the institution that’s when I
called my mom and by that time Harry and I were engaged and I said “Well, I got news to tell
you, two of them. One, I don’t live at AVS no more, I’ve been out for three months and plus I’m
engaged to be married.” So the following weekend they’re down at my place. Harry was down
there as well as the roommate and the roommate couldn’t shut up. She goes “Your daughter’s
engaged.” They go, “What?” I said “Yeah, this is Harry.” So instead of saying 27 years older I
said 17 because in the ‘70s you weren’t allowed to have men older than you too old and I didn’t
want to tell them the truth.
15:11:06:05 – 15:15:11:10
Q. What was their reaction?
A. Like, actually they were happy. You know why? Cause I wasn’t their responsibility and I
swore up and down when I got out of AVS I wasn’t gonna have, I wasn’t gonna have then
depending on me or I depend on them and I found out later that a lot of children who had
parents like that, they were told to get rid of the children, put them away, forget about them
but then there was some families that do love their children and kept them home. And
anyways I went to programing at UCP when they were downtown and I met a board member
and she asked me how was the program and I said they were fine. I said, “someday I’m gonna’
be where you’re at.” She goes, “where?” On the board and as I got into more programing with
UCP they started teaching us to be advocates by socializing, by getting out, going to restaurants
we were taught how to raise money for Disney World trips, for New Orleans trips, to be our
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own advocates. And meanwhile, like I said, I had moved in with Harry and people took to me
like they did to Harry, but I still had to prove myself plus I was supposed to start going to
community college. I went for four years and the reason I went for four years cause I want to
take my time and it took me, um, whatever the test to get into college, here I was real smart, I
was 14th grade level, reading level with, I needed some developmental courses in English and
some math. And then I took up psychology and I finally got an Associate’s Degree in Psychology
and, and now I don’t have the license but it has helped me throughout the last 38 years
because I’m still dealing with people with disabilities. I’m still dealing with seniors who have
disabilities. I’m still working with seniors who depend on their husbands for everything and
they don’t know what to do after they passed. So Harry and I were the big leaders, and now
I’m the big leader. And the joke is I’m also on-- I’m a Commissioner on the Board of Directors
of the Housing Authority of the City of Pittsburgh, and now I’m making policies.
CHAPTER FIVE: ADVOCACY
15:15:14:10 – 15:18:09:00
Q. You’re talking about some of your advocacy work. Did you and Harry consider yourselves to
be partners in advocacy?
A. Yeah. Um, yes because as I was trying to get out of the institution, Harry was a member of
the Open Doors for the Handicapped. In the late ‘70s Access was born and I was a part of that
with him and in attending care I was with the adults when they went after in the ‘90s and also,
um, Harry and I were advocates for getting lifts on the buses and also the ADA thing. But Harry
had to quit after he, after he got sick in ’83 and I kind of took over for him. But he always said
to people, after I got the business, you know anything that Janet wants, she goes after, she gets
it and he said you can’t keep her down and she’ll find a way to do it or have people do it for her.
And that’s why now I’m a successful advocate because I belong to so many committees and
boards and I’m happy with that. It’s like being rich, without the money. And the other
committees, I do belong now is the City County Task Force on disabilities for people and I think I
got that one backwards but that’s okay. I’m on the Consumer Health Coalition and I’m Vice
President of CLASS. It’s no longer UCP CLASS, it’s just CLASS and I’m their Vice President.
15:18:09:25 – 15:20:27:00
Q. So, Janet, by serving on committees and boards what do you think you’ve been able to
contribute or what have you been able to do to benefit other folks with disabilities?
A. I help them see that they can have what I have, I just went after it, in a nice way, and I
showed how to get things and I inspired them, I guess, say why are you sitting there, go after it.
Show them what you can do, tell them what you need, there are services out there. And I think
15
my being a voice for the ones who can’t really speak up too much and they hear me and now
I’m seeing the younger folks trying to step up because if they don’t keep our fight up they’re
gonna lose it. And now we’re in the process of doing this film for the disability movement, they
can preserve the history of it. Tell them were you come from, which I have. You know, being
institutionalized, being my own motivator to get out and showing the world no I’m not retarded
and seeing what I can do, I always think about a lady. I don’t know if she’s still around but she
told me, just that she was telling some other ladies, just imagine if Janet wasn’t a disabled
would have been the biggest leader now or would she still be cooped up in the institution.
15:20:32:20 – 15:21:23:10
Q. Janet, I wanted to ask you, firstly, how long you and Harry were married?
A. 27 years and he’s been gone eight years and I seem to do okay cause people were worried
about that, but I’m not worried about it because I have foresight and I have a good relationship
with my God and I just try to do what’s right. And even though some battles you can win and
some battles you can’t but then again, its human nature.
15:21:25:10 – 15:21:39:25
Q. Janet, are your parents still alive?
A. No. Um, my mother died I think about 8 years ago, my dad died in 2010.
15:21:41:00 – 15:23:29:15
Q. They certainly lived long enough to see you become a great success in your life and work.
Did they ever tell you that they were proud of you?
Q. Only my mom. My dad and I did not have that relationship. Um, my mother did but she
ended up having Alzheimer’s and my mom’s sister had it and my grandmother had it but I asked
my uncle before he passed, um, he saw me in February, I think , in ’08 and, it might’ve been ’07,
and he was proud of what I’ve done and so was my co-, his daughter and her daughter. I don’t
think my mom really realized what I had done in my life. I don’t think she really realized that.
My dad, I guess he was sort of proud of me, for the last five years of his life I had no contact
with him because he couldn’t hear me and I didn’t, I had a hard time talking with him anyway,
so. To me it’s okay.
15:23:30:10 – 15:23:58:15
Q. Were you able to continue your relationship with your sisters?
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A. No. The one sister I hadn’t spoke to in about, really spoke to her in about 25 years and the
other one, when my dad passed I thought we could start something but that never really
materialized.
15:23:58:20 – 15:25:45:15
Q. So, Janet, which relationships are most important in your life today?
A. My friends and the people I hang out with and the ones that take care of me cause I have a
live in and I have 12 hours of help every day and I always tell them you take care of me, make
me look good, make sure I’m okay and I can help other people to raise awareness, to speak to
people and tell them that yeah, we’re all different but yet we’re all the same. We want to live
our lives to the fullest, we want to be like other people and I, even though I was born with my
disability I don’t think, I know I have it but I just deal with it and go on from there and act like
I’m normal, which I am, in one way I am. It is ___ cause I think I learned to live with mine and
now I’m learning to help people with their, to live with their own disabilities, that there is life
after the initial disability sets in you can work with it.
15:25:46:05 – 15:28:13:20
Q. Janet, I would love to hear your perspective on something. Today, well, the people who’ve
been living in the community, people with disabilities, for many, many years, 40 years, 50 years
depending on who you talk to. Um, but having a physical address in the community isn’t the
same as being part of the community.
A. Yes.
Q. Do you think that people with disabilities, living in the community today are often isolated or
are they successful in become parts of their community?
A. Some are, some are isolated because they choose to. Some are not, they’re very outgoing
like I am and they want to be a part of their community and right now what is tough is,
especially when you have a mixed community with younger and seniors, especially when they
have disabilities, especially mental disabilities cause they look like they’re fine and they’re not
but it’s awfully hard to work with seniors and the younger generation. It’s hard because seniors
remember how they did it, the young ones are trying to fit in but it’s awfully hard but the ones
that are starting to be advocates they are now gonna carry on what we had started and
continue to keep ___cause I said I’m gonna retire at 60. They said, Janet, you’re too valuable,
you’re not gonna’ retire. And guess what, I’m here to stay as long as I can do it.
15:28:14:15 – 15:29:36:25
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Q. Janet, what do you think are some of the biggest challenges facing the disability community
right now?
A. Um, keeping services, that’s the biggest challenge and also the other big challenge, if you
become disabled will the monies be there for the services cause the younger generation now
has to come up with solutions like we did in our day. Like I had to learn from another
generation who had to with the Legislatures, I’m doing that now and hopefully the next
generation coming up, 25 year old, the 30 years, really try to keep the services they have now
because money is hard to come by now like it was back then.
15:29:37:10 – 15:32:17:15
Q. What will happen if people lose those services or if they’re drastically cut back?
A. It already has started, they’re going back into nursing homes, going back into institutions and
it’s very hard to get out, so. They will lose everything if they don’t come together and say what
they want and show what they need because you need to work with Legislatures, with
government people, the people who run the programs, you need to tell their story, tell your
personal story. That’s what you need to do and come up with solutions. Don’t be radical
because then they’ll look down on you. Just come up and talk with them. It’s okay to rally but
you have to rally in numbers because that’s what I’ve been doing, going to Harrisburg and
saying my little piece or my little chant and people were listening. And I had one lady says, I
heard you on radio or I seen you on TV and today I heard someone say I’ve always wanted to
meet you because you are a positive person and I said I only want to live my life as normal as I
can and I just find out what to do, how to do it and I’m trying to stay out of a nursing home or
an institution. That is my fight, and it’s hard. And the future, from what I hear, is gonna be
rocky because if people don’t get the right kind of help through the attending care or get jobs
where they can make money to help take care of their own needs then we’re gonna step back
50 years and I don’t want to see that happen.
CHAPTER SIX: REFLECTIONS ON LIFE, CAREER
15:32:19:05 – 15:33:47:10
Q. Janet, when you look back on your life what gives you the most sense of pride? What are
you proudest of? What has been your greatest accomplishment, do you think?
A. I lived my life the way it was supposed to be lived. I told people I was gonna’ get out of the
institution but I realize also that they were meant for me to learn how to live with people and
to enjoy life. And I look back on my life is, it wasn’t a bad life like people thought, they thought
18
I struggled. I didn’t struggle. I was, showed them I needed a wheelchair or when I was going to
school I needed a motorized chair and when I wanted to go to the store or anything I wanted to
do I needed a lift and all you have to do is ask, come up with a solution, work with people who
have the money and guess what, you’ve got everything you need, so.
15:33:48:00 – 15:34:19:05
Q. Janet, those are all the questions I have for you today but is there anything that you would
like to add?
A. Not really ‘cause I’m hoping this is a good history of someone’s life and how she looks at it as
a positive and not a negative and that’s the way I was brought up, to be a positive person. So
thank you.
Q: Thank you.
15:34:34:00 – 15:37:18:15
Q. Janet, you’re a very established self-advocate. Have you been recognized for your work in
self-advocacy?
A. Yes. Okay, it started in, um, it started, I think, ’78 when I won the Rival of the Year Award
and then back in, sometime in the early ‘90s I won the Advocate Award for UCP (United
Cerebral Palsy) and then in ’09 I won the TRCIL Award and then, I forgot what it was, I’ll come
back to that but recently I won, I won the Service Award from United Cerebral Palsy now CLASS
called the Service Award, Co-, Eugene Cohen and Frank Bolden Service Award. There’s another
word but I can’t pronounce it but I’m real proud of that. Um, Georgian has it on her camera,
what it is, is a cherry wood plaque with a big gold clock here and then they, for the award they,
the award was for and my name in gold letters and the year I won it. And to me that was real
special. You know, I think of my life as normal and I’ve done everything I was asked to do for it
because I’m an advocate. Um, I do a lot of things in the community, I also have my own
business and that’s why I got the award because even though I do depend on help but I don’t
live in an institution and I just live in, in somebody’s neighborhood, smiling and doing whatever
I do.
15:37:19:00 – 15:38:21:10
Q. Janet, one of the reasons people award other people is because they think they’re leaders.
Obviously many people think of you as a leader, do you think of yourself in the same way?
19
A. Um, I think of myself as a leader now. Now, you know when they call people ‘senior
leaders’? I call myself a legendary, and that’s what’s gonna’ be whoever takes care of my ashes,
they’re gonna have something written somewhere that this was a legend in her own time. But
I’m happy with my awards and I seem to pick them as I go along so who knows what’s gonna
happen next.
END
* Janet is referring to the Yellow Cab strike of 1961, Pittsburgh, PA
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