Visionary Voices
Interview with Debbie Robinson
Chapter 1: Childhood and Education
14:09:27:00 – 14:11:35:19
Lisa: My name is Lisa Sonneborn and I’m conducting a video interview with Debbie Robinson at Temple
University in Philadelphia Pennsylvania on September 15, 2011. Um, also present is our videographer
Lindsey Martin and Debbie do I have your permission to begin the interview?
Debbie: Yes you do.
Lisa: Thank you. So Debbie, what I’d like to start with today is, um, is some information about your
childhood and so the first question I have for you is where and when you were born?
Debbie: Uh, I was born at Temple University, um, uh, in Philadelphia, um, uh, 1960. Uh, I was, um, a
preemie, premature, um, seven months, uh, premature.
Lisa: And Debbie, where did you grow up? Did you remain in Philadelphia?
Debbie: No. I grew up in different parts of New York City [Queens New York], uh, different parts of New
York.
Lisa: Can you recall maybe one or two of your earliest childhood memories?
Debbie: Uh, um, I recall when my brothers, I had five brothers so, uh, I was going to the, um, they liked
basketball so I recall them, uh, wheeling me to the basketball court, watching them play basketball.
Lisa: Are you still a basketball fan?
Debbie: Yes. Football is my favorite though.
14:11:37:00 – 14:13:00:19
Lisa: I wonder Debbie, if you could tell me a little bit about your mother?
Debbie: Um, um, my mother, um, we a, well when I was born, um, you know, doctors, um, uh, told my
parents that I have cerebral palsy so basically I stayed home, um, mostly my brothers watched me. My
mother and father worked. My father was in the service and he, um, in the, I mean, in the, um, Army,
uh, so, uh, my older brothers were watching me. My mother worked, uh, so they kept me at home or I
had a lot of operations to get when I was young. Uh, in the hospital a lot.
14:13:02:15 – 14:13:42:23
Lisa: Debbie, you said your mom worked. Can you tell me where she worked? What did she do for a
living?
Debbie: Uh, she worked in New York. Korvettes department store is one of the places that I remember
she worked and my father was a bus driver but like I said he was in the, um, he was also, um, in the
service. Uh, Army I believe and my father was a, um, a bus driver, uh, Green Line bus line in New York.
14:13:42:16 – 14:14:30:23
Lisa: Debbie, you mentioned you had five brothers.
Debbie: Yes.
Lisa: And you’re the only girl?
Debbie: Yes.
Lisa: So what was it like being the only sister of five brothers?
Debbie: Well, , uh, you know, it was a loving, loving family. Um, my brothers, uh, my older brothers, uh,
you know, um, I had one in the Army another one in the Army and one in the Air Force. Uh, you know,
they, they’d taken me places, like basket, like I said to the basketball court or, um, when we were
younger I remember us playing somewhat of baseball. I, um, you know, watched them play baseball too,
so.
14:14:31:22 – 14:15:52:11
Lisa: Debbie, you had said that you were born at seven months, born prematurely. Um, and you’ve also
said that you have cerebral palsy. When was your disability diagnosed?
Debbie: I believe, um, uh, six months, um, when I was six months old. I believe, um, not really sure but I
really believe that, uh, around that time or maybe a little older. Um, you know, around that time people
didn’t know what, uh, the doctors, how much the doctors knew or how they knew anything about, um,
about cerebral palsy cause I knew I was different cause I couldn’t sit up, I couldn’t, um, crawl right or,
you know, there was things that, noticeable cause I was, uh, you know, uh, premature, um, seven
months, uh, so, uh, that had a lot to do with it.
14:15:53:17 – 14:16:47:17
Lisa: So you have, you had a large family, six children, two parents who worked. How did your family
manage to support you at home?
Debbie: At home, uh, like I said, my brothers, the older ones, um, was watching me and the other part of
the time I was in, um, in the hospital with operations. My father always came up, my mother came up. I
had, you know, about 15 operations over that period of time, so I was at, in the hospital getting
operated mostly. Uh, you know, most of the time I had to go for an operation and that took weeks and
months and whatever. Sometimes they had to repeat it. It didn’t work right the first time but I had a, in
that time frame I had a lot of operations.
14:16:49:16 – 14:17:55:01
Lisa: You must have been very young when you are having those operations. Wondering, do you
remember anything from being, from all those hospitalizations?
Debbie: Well, uh, you know, uh, I guess the going through it, um, cause I can’t tolerate pain so, uh, the
casts, the, uh, you know, not being, uh, I always had to have somebody around, uh, to take me up and
down the steps or, you know, to the bathroom. Um, bedpans I guess, uh, not able to, um, get around.
14:17:55:22 – 14:20:11:05
Lisa: Is that what you remember from your time in the hospital, in your hospital stays, needing that
support, Debbie?
Debbie: Well, you know, I got a lot of support at home. I had all my, um, you know, my brothers. The
older ones, you know, my mother and my father, uh, you know, um, so all my supports, um, really, um, I
got a lot of support from, um, my brothers and, uh, my mother and, you know, uh, at home so they did
what they could. Um, uh, you know, um, cause there wasn’t that many around that time I don’t think
there was a support network or, uh, in the 60s especially in, uh, in New York and then the recovery time
I had to go for, um, this other place out in the Island, um, for recovery after you have an operation and,
um, before I even went home, uh, you know, and, uh, and that was a scary place to me cause I was too
young. You know, they, um, my family get, my parents got me on the weekends and then I had to go
back at, uh, and stay there for, um, during the weeks and come home on the weekends.
14:20:12:20 – 14:20:59:27
Lisa: And what was scary about those places or those times for you?
Debbie: Uh, I guess it was out on the Island. It was a scary building. It just was, you know, I never liked it.
They always had to, I remember when, uh, the only way they could, the only, like a Sunday. The only
way, um, they could get me out of the house or, um, to go back there is when I went back to, they wait
till I go to sleep and then get me home, ready and I’m in the car but I’m already knocked out. Too tired
and they drive me back there for the week and then, you know, I come home on the weekends.
14:21:01:07 – 14:24:08:10
Lisa: Was there ever any discussion in your family, Debbie given the support needed, you needed, the
support that you needed particularly after your surgeries. Was there ever any discussion in your family
about sending you to an institution to live?
Debbie: No. Uh, no, um, not that I, uh, um, not that I know of, um, I don’t, I think my parents just
decided to have me, um, at home and knowing I had three older brothers. Um, and, you know, when my
mother got home and the things at home so, um, you know and, uh, I’m not sure if, um, when the
doctors met with my parents, uh, if that was a discussion, um, it might of been, uh, but my parents, uh,
decided to have me at home, uh, because of the support that I had at home and, you know, not
including I have a big family. My cousins, uh, or, uh, my uncles came by or, you know, everybody, uh,
you know, nobody knows how to really take care of you. They, your parents know more than, uh, I
mean, uh, you know, my mother, um, and my, and the rest of my family, my mother and my father and
my brothers. They knew how to take care of me if need be. Uh, you know,, cause we had to, we had the
bedpan and my brothers and my family were pretty, um, pretty strong even though the steps and things
like that. I’ve always had people, uh, you know and carry me and if I had to go with the pillows and stuff,
you know, I think my parents realized they can take care of me better than strangers can cause they
know, uh, they, you know, I’m their daughter so and nobody that knows you better than your parents
and I think that that is, uh, you know, played a part in it.
14:24:09:14 – 14:27:38:10
Lisa: Debbie, I wanted to ask you, when you started school, did you start school typically like kids do?
Debbie: Uh, oh, I don’t know. I remember going to school. I don’t know if it was, um, I remember going
to school when I was young, real young. Um, and I’m not, I don’t know, uh, if it was kindergarten, first
grade or what it was. I was still in a wheelchair but I had one of the toughest teachers I have ever seen
and her name was Mrs. Glass. She was a little, she was short, had glasses, big thick glasses. Uh, and
knowing my parents could not get me out of the chair and I wouldn’t to go to therapy and this and that
to teach me how to walk. Uh, she was determined to get me out of the chair. I just remember, um, going
into her class and back in those days they had this stand up box and wouldn’t, and you had this door, uh,
in the back of it and I, so I could, you know, and it was one time when she said I’m going to get you out
of this chair one day. Um, and I guess when I came in there with my chair she, um, had this, uh, you
know, why are you not getting out of the chair? I didn’t feel, I came up with all kinds of excuses. She
didn’t want to buy it. She was tough, one of them teachers where, you know, uh, so she had this box,
like I said, I had never seen one, uh, so, um, they had my legs, um, and I had braces I believe at some
point, um, and I remember, um, in the middle of the room she got me up into this box and this, it’s a
wooden table, it’s all wooden, it was wood and it locks in the back and, um, and, um, and I stood up in
there. You couldn’t go anywhere, uh, till class was over and whatever. Um, that’s where I did my
homework, all my, not homework, where I did my work, uh, you know, in school and stuff but, um, you
know, I always call it, I call it the standup box, a wooden box you stand up in it, um, and I, and after a
while I got the meaning of it and then I started, um, and, you know, I said this, uh, I started that, I really
started, um, doing what I was supposed to do at home which was getting out of the chair, um, walking
with crutches when, um, she, she got me that way. She was tough but, you know, I appreciated that.
14:27:38:26 – 14:29:43:23
Lisa: So you think her, her toughness and her making you stand in this box was a positive thing?
Debbie: Um huh. Yeah. Uh, it was only when I had to go to school and when we had class, you know,
when I was in school, um, that I had, um, and it did help, um, straighten out my legs, make it stronger,
um, you know, back in those days when school, it was special ed, um, you know, and, uh, I appreciated
it, I, um, you know, how many times will you say no to the teacher back in those days. That’s a, that’s a
big no-no. They had the ruler then. They could hit you in your hand, stuff like that. I fell asleep in one of
my classes, in her class. I was up doing my homework or something and somehow I just nodded and
then she came out with the ruler and. Yet in those days you could be disciplined, uh, you know,
disciplined in those days. It was, um, she was hard knocks to me. Uh, I mean it was good, it was good
back then, I mean, that’s, that’s what we needed, I mean, in a good way, uh, you know, we respected,
we did, you know, I understood, I was young. I understood the reason why and she explained it to me,
you know, she, you know, wanted to see me up out of the chair and walking or standing or, you know,
she, you know, she, uh, explained it and I went along with it and started doing what I had to do at home.
14:29:44:21 – 14:30:31:02
Lisa; Apart from the standing box, did you like school?
Debbie: Oh, I loved school.
Lisa: Did you have a favorite subject at school?
Debbie: Mine was math and, uh, you know, reading and social studies. We didn’t have, um, integrated
into other classes until really later on but, you know, we stayed in our classrooms. Uh, you know, I
mean, I called it back then the special ed, I guess. Uh, you know and, uh, but she was the first one I
remembered.
14:30:33:08 – 14:30:58:00
Lisa: After elementary school, did you then go on to high school?
Debbie: Yeah, I went to another school, um, to another grade and this, I had, um, she was tough, she
was really nice and I wish I had a picture. I had a picture of her and I, that was when I was walking with
my crutches then. Her name was Mrs. Himes. She was really nice, uh, very nice.
14:30:58:20 – 14:32:19:06
Lisa: Debbie, as you move into the higher grades, junior high, high school, did you cut, were you still in
special ed classes or were the classes more integrated?
Debbie: Well, when I, as, when I went to, when I went to junior high and I guess that was when I, um, I
was, uh, around seven, eighth grade, eighth grade, um, 237, um, PS37. I was still in New York then and
that was my, um, that was my high, that was my junior high I believe cause my younger brother went
there and I ended up going there. Um, and I guess that was in the 70s. I, I don’t, I can’t remember the
years, um, when all this cause it was so long ago so I, um, but I remember, um, going into, I believe it
was PS237. Um, and that’s when I remembered, um, being somewhat integrated in the other classes
and things. When I moved on to other subjects.
14:32:19:25 – 14:33:40:15
Lisa: And so what was that like being in a more inclusive class having come from special ed classes?
Debbie: Um, it was interesting. Um, I mean I liked it, uh, you know, it was, um, getting used to the class.
You know, there were kids that pick on you. Not as bad as today, um, or looked at us funny. You know, it
was, um, some getting used to, I was like really excited, um, it was hard, it was somewhat hard to adjust,
uh, and it was hard for them to adjust, seeing people with disabilities.
14:33:41:03 – 14:37:32:27
Lisa: Why you think that, why do you think it would be hard for other students to adjust to students,
classmates with disabilities?
Debbie: Because back in those days no one talked to the regular students or prepared them as much as
we were prepared. I sure wasn’t. Um, when parents and I believe, um, didn’t really talk about it, didn’t
really know, uh, and so I don’t think it was that many education on, um, disabilities in general, um, you
know, for parents and students to, um, adjust or get to know what it is. People thought that if I touch
you or Lindsey or anybody, um, that they would automatically get it. Um, it’s like a disease, um, so I
really, you know, and I grew up in New York so New York is different than Philly, um, and, uh, so it was,
um, you know, I just focus on learning the best way I knew how and doing what I, uh, I mean, I got a lot
of awards for being good in school. The, um, outstanding awards and things that, you know, cause I just
loved to learn and, uh, to be at school and try to, uh, I guess I, um, just focus on, um, learning as much as
I can and if, you know, the kids, uh, made fun or did, you know, um, you know, um, I didn’t pay no
attention to it, um, cause I was in the books. I had try to be in the books and try to, um, keep up with my
classes as much as I can cause, uh, you know, we didn’t have, um, somebody, um, that could come in
the class and help you along and, uh, I mean, you know, doing my homework at home being up half the
night cause it took me longer to understand it than most. How long it took me to finish my homework,
uh, um, and them heavy book bags and we had some heavy book bags back in those days. I think I broke
as many book bags as I could count.
14:37:33:20 – 14:41:21:03
Lisa: When kids tease its hurtful and sometimes that stays with you for a long time, did you ever feel
that you are carrying some of that?
Debbie: Well, yeah and then I and then, you know, I’m looking at the years I was born, around that or,
you know, 70s, um, you know, I met some friends when I was in special ed. We kept in touch, um, I
figured that, um, their parents and they didn’t get educated. There were no, you know, and I think that’s
those years were the learning years for everybody, um, even as, uh, to, um, you know, cause for us just
to walk into a normal classroom is more scary because they had to, um, make allowance to how I’m
supposed to be sitting, you know, the chairs, the tables and had a, uh, so I think everybody was being,
trying to, um, and it depends on the parents. Um, the kids pick on us and may call us names cause and
we just tell them, you know, we’re, this is, you know, even though you touch me you’re not going to end
up with, uh, you know, and I had to learn about my own disability. No one explained it to me and so I
ended up going to a gym class so I didn’t know either how to and somebody came up to me explain
what happened to me or what do I have. I didn’t know and when I asked parents questions, certain
questions they couldn’t explain it, so it, you know, because back in those days the doctors weren’t
educated on cerebral palsy or whatever. I guess they figured, uh, I don’t, I think it had to do with a lot of
the education and, uh, the knowledge and a lot of the parents especially my problem try to get it from
understanding it from the doctors to know what it is. Uh, cause I was curious so I, I, um, asked a lot of
questions, um, so I, you know, that’s the only way you’re going to learn. So when people did come up to
me and tease me or did this and that, I have something to say, um, and just instead of saying I was born
like this and I don’t know the reason why, uh, you know and, uh, um, as you know back in those days,
uh, I don’t think there was much education on different disabilities, um, on different types of disabilities
that people have.
14:41:20:16 – 14:43:13:02
Lisa: Debbie, you said you had to learn about your own disability and you asked questions, who did you
ask the questions of?
Debbie: I think when I had, when I first went to gym, uh, wait a second, uh, when I had gym I had this
gym teacher and he put me on the mat and did some stretching exercises, I just asked him questions
and he, I remember him drawing a picture and explaining the body, uh, um, and, um, you know, so he
drew a picture of the body, how the body works, or how it, you know, the function parts and this and
that and I was, um, fascinated cause I wanted to know, uh, you know, um, how this, how this could of
happened, what happened, um, you know, and I always had a curious mind anyway so always, uh, asked
questions. That’s the only way you might get answers, uh, to anything. Um, when my parents told me
what I, what they know and what they could, uh, but I wanted some more. I wasn’t, you know, I was
more really curious because I had two other brothers behind me. So that’s why I was curious.
14:43:13:04 – 14:44:45:25
Lisa: Debbie, as you learned more about your own disability did your parents also learn? Were you in a
sense your parents teacher by your disability?
Debbie: Ha, ha, ha. Well, I, um, when I went home I, I told, yeah I believe I told my parents that I, you
know, I talked to one of my gym teacher and he showed me this picture, actually he gave me a picture of
what he drew and, you know, and explained, uh, cause I had some more, you know, uh, you know, my
parents accepted me, uh, and accepted the disability but I think I wanted to go further than, um, you
know, um, was trying to find out, um, because I was, I had three older than me and I had two behind,
two younger than me so I had two brothers born, um, a couple years after I was born. So, and all, they
came out all right, no disability, you know. So I think that’s where, um, I was more, uh, wanted some
more answers.
DAY TWO
14:46:12:05 – 14:46:36:14
Lisa: My name is Lisa Sonneborn and I am conducting a video interview with Debbie Robinson, um, at
Temple University in Philadelphia, Pennsylvania on September 16, 2011. Also present is our
videographer, Lindsey Martin and Debbie, do we have your permission to continue our interview?
Debbie: Yeah, uh, yes you do.
14:46:36:28 – 14:49:08:04
Lisa: Thank you. So Debbie, um, a little earlier we were talking about, um, your experience in school and
you had been talking a bit about, um, the reaction of students to the inclusive classrooms that you
experienced in junior high and I wanted to just ask a question about the teachers when you first entered
an inclusive classroom in junior high. Did you feel that the teachers were prepared, um, to teach
students with disabilities?
Debbie: Uh, they were regular teachers so, um, uh, it was like, you know, um, the good thing about it is
that I was with, uh, you know, regular students and so, uh, it was, um, you know, they didn’t treat me
any different, uh, you know, I, um, tried to keep up with the class you know, my homework and
everything, uh, you know, um, you know, they just, uh, treated me like any other student in the
classroom, uh, uh, I didn’t notice any difference in, um, I got the same, you know, work that everybody
else did, um, and I did the best I could, um, in school as it was, I, average, um, only when, uh, I guess I
only noticed it with, um, when I was bringing home my report card. Uh, but, uh, I participated in
everything that, uh, my regular class participated in, um.
14:54:15:12 – 14:54:42:13
After junior high what did you do next in terms of your education?
Debbie: Uh, my parents put me in a, uh, trade school, uh, for four years, I believe. Well, at least until I
was 21.
14:56:29:01 – 14:57:50:05
Lisa: So what happened after you left trade school? What did you do next?
Debbie: Uh, well, after I left the trade school, um, I basically stayed home a lot of years, um, I did
remember as I over the years when I was going to trade school they did give us summer jobs so I was
able to work in the summer as a teacher’s aide. Um, and I found that very interesting, working with kids
as a, um, teacher’s aide, um, even, um, serving lunches but this was in the summertime. We ended up,
uh, having, um, they gave the summer jobs, some of. My father signed me up for some, um, summer
jobs and with my other friends that I got to meet, met in trade school.
14:57:50:07 – 14:58:39:06
Lisa: What kind of jobs did you do, Debbie?
Debbie: Uh, getting things ready for the classes, uh, for the, for the kids when they came in. Um, setting
up the room, uh, helping the student’s, uh, with their, um, summer school work. Whatever the teacher
had me doing around lunchtime, uh, before lunchtime, around 11, 11:30 we had to go to the lunchroom
and get the, um, lunches set and serve the lunches as well.
14:59:00:25 – 15:00:50:17
Lisa: So Debbie, I wanted to, um, ask some questions about your family. Some additional questions
about your family, um, if I could? I know that when you were a young woman, a teenager, your parents
divorced and I wondered if you could tell me a little bit about that time. How you felt, how it impacted
your family?
Debbie: Uh, well my mother got, I guess my parents, my mother and father got divorced when I was a
little older than that. I’m not sure, um, how old I was when that happened. Um, it, um, it was very hard,
uh, I was living with my, uh, it was I believe me and my younger brother, um, was staying with my dad
right then. Um, and, uh, it was very hard, uh, the separation, divorce. It wasn’t easy, um, and then I end
up, uh, staying with my dad for a while in New York. Uh, my mom was out here in Philly. She was
married already.
15:01:28:14 – 15:04:55:00
Lisa: When you look back, what, how would you describe your feelings about your childhood?
Debbie: Well, um, my childhood, um, you know, was very supportive, uh, it was loving, uh, I come from,
uh, a family that’s very close, um, you know, we were very close, uh, knit family. Um, I loved my
brothers, uh, you know, brothers and sisters, we all looked out for each other or, um, you know, I was
the only sister so, uh, I, you know, they always looked out for me, uh, even though I had younger
brothers and older brothers. Um, you know, and, uh, they didn’t treat me any differently, um, my
brothers, um, because of my disability so, uh, I was involved in a lot of the activities as I told you, uh,
yesterday. Um, my brothers loved to play, um, basketball and, uh, baseball and, uh, I believe I forgot to
tell you in one of my school years when I was playing in gym, I played, um, I loved to play basketball. Not
basketball, it was baseball. Uh, we had gym, we had gym, um, when I was younger. Uh, we had, uh, we
played baseball so, and I loved baseball. I was pretty, I was a pretty good hitter then. I was first
baseman, uh, so that really got us, got me into sports, uh, today cause the way my brothers loved
sports. Basketball was their thing and they played baseball. Uh, that and when I was young that’s what
really got me into, into playing or and I was also in the Special Olympics around my younger time. I can’t
remember the year or around that, um, you know, when the year that started but I was in the Special
Olympics back in, in my younger days. Um, my teenage days, I think.
15:04:56:12 – 15:05:54:06
Lisa: Would you, would you describe your childhood as a happy one?
Debbie: Uh, yeah, um, most part, um, family has, had their own, we had our own, uh, issues or things
that come up but for the most part, um, we were very happy and a sense of, you know, by brothers and
sisters, uh, we, we always, uh, really, um, you know, I had some friends that I grew up with too so, uh,
and they had their friends but, uh, basically, um, we really, um, got along very well. Brothers and sisters
and things, looking out for each other.
15:05:54:19 – 15:07:55:03
Lisa: Did you have any special hopes or dreams for your future when you were growing up?
Debbie: No, because I didn’t know, um, I didn’t know what I was going, who I was going to be or what I
was going to be. I had no idea, um, I just like, um, I was always wanted to learn how to, uh, I always
wanted to, I wish, um, my parents did, um, put me into high school and go through that process which,
because of, um, my parents went to the, um, the teachers meeting, I wasn’t invited or I couldn’t go.
They looked I guess all my records and my scores and, you know, uh, they talked my parents into, um,
putting me into, uh, trade school instead of going and maybe my grades wasn’t high enough. I was not
happy when I, um, because I wanted to go. I like school. I really do. I, you know, I looked forward to it,
you know, and I guess that’s the only upsetting part of it, uh, cause you lose what you don’t use so I lost
many, many years, um, and it was very hard.
Chapter Two: Move to Philadelphia and Early Advocacy
15:10:30:23 – 15:12:42:17
Lisa: So, you are a New Yorker. Born in Philly but raised in New York. Um, but eventually you moved back
to Philadelphia and I wonder if you can tell me why you moved back to Philadelphia.
What were your first impressions of Philadelphia? How was it different from your experience in New
York?
Debbie: It’s a big difference, um, Philadelphia had more, I found out that, um, you had more things out
here for folks with disabilities. Um, in New York is a really big city, um, it was hard to know what, um, I
had a lot of friends, uh, to get involved into anything in New York, um, and they didn’t have, uh,
Paratransit out there yet. Um, when I was growing up in, uh, thank god my father was a bus driver. Um,
and my mother told me a lot of things out here as well.
15:12:43:02 – 15:14:03:11
Lisa: What kinds of things did your mother tell you about out here?
Debbie: Well, she did tell me about, um, the transportation out here. It was more easier, um, you know,
but I, um, and then, uh, you know, when she told me about, uh, you know, the transportation and, uh,
getting around was easier. Uh, I decided to give it a try, uh, but my first concern was, um, making sure
my mom gets out of the hospital and doing what I needed to do at the house, uh, to help her recover.
15:14:04:15 – 15:14:55:15
Lisa: Debbie, when you moved to Philadelphia as you said there was a transportation system in place
and that can make a big difference in anyone’s life. Um, you said it made a big difference in your life,
um, I know that it started to allow you to go places like UCP and other types of events and I’m
wondering if you can tell me once you have access to transportation, um, how you used it, where you
went?
Debbie: Well, that came later. I think, um, what I had to do first was, um, to talk to my dad and tell him
that I decided to leave, um, and move to Philly and I had to deal with those things first, um.
15:14:57:10 – 15:15:57:00
Lisa: Were those difficult conversations?
Debbie: Yes, uh, cause I was living with my dad, um, when my mom left or went to Philly. I was still, um,
my father got remarried and I ended up with a stepsister and, um, I took care of her when she, until she
was like maybe three or four cause my parents worked, I mean my stepmother worked and my father
worked so. Um, so that would, that took some adjustment. Um, and then, uh, living with my mom and a
new step dad, um, and I needed to know and needed, you know, it took a lot of adjustment at first.
15:15:59:00 – 15:17:37:29
Lisa: When did you start to feel at home in Philadelphia?
Debbie: Um, I guess a couple weeks. We had to deal with, um, you know, getting me signed up on the,
um, the Social Security and, um, so there were things that we needed to do first, um, to get me settled
but first I had to make sure my mother was settled and dealt with that first before I could get settled in
and so my mom had to take me down to get everything transferred and we had to deal with all of that.
Those first things so it might have taken a couple months.
Lisa: Once you started feeling more settled, Debbie, and you sort of took care of some of those things,
um, did you start meeting people and making friends?
Debbie: I, um, and I don’t remember when, um, I guess I went to a psychologist to get tested, um, and I
was put in, I, they was talking to me about a workshop so somehow I ended up and I don’t know how I
got to, um, the UCP, um, where Carolyn goes. Uh, I was there.
15:17:40:05 – 15:19:16:01
Lisa: You met some people there that you would I think probably..
Debbie: Exactly, um, that’s why I, um, you know, well, before that. I just remembered something before
that. Remember when I told you I was trying to go back to school?
Lisa: Um
Debbie: Well, um, my mom tried to get me back into Widener and we tried that and it didn’t work out.
When I saw my first report card I was very disappointed, um, it was upsetting to me more than it upset
my mother, um, and I knew that at that time I, um, you know, that that wasn’t the way or, um, you
know, um, cause I know I missed a lot of schools out in the years. Uh, so we tried that before, um, and I
think that’s when I tried that that’s when I got tested and everything and, um, somehow I ended up
going to a workshop, um, and that’s where I met other folks like myself.
15:20:02:03 – 15:23:08:10
Debbie: My workshop teacher was telling us about a real jobs, um, conference at, oh, City Line Avenue.
Uh, and I really was excited cause I really wanted to work after my first experience working in the
summertime. I don’t care what kind of job it was. I just wanted to work, um, so I attended, um, the, um,
the workshop, uh, the, our, um, you know, they had to sign us up or whatever and it was a Saturday I
believe. Um, and it was on City Line Avenue, the real job at Adam’s Mark Hotel. Uh, and I really went
into, um, a really, really nice workshop, uh, I, um, you know, and I, uh, met this wonderful and I, um,
met this wonderful workshop, uh, and I don’t remember his name at the moment, uh, but, um, he was
very impressed with me cause he asked me to stay after the workshop cause he wanted to talk to me.
Um, I guess he was impressed with the questions I answered and, uh, and things like that and, uh, he
was, he said, take a walk with me and then he was telling me about, um, he wanted me to meet two
other people and the first person I met was Tom Kramer and, um, I did not know, um, and then Tom
asked me, I introduced myself, he introduced himself and he asked me what county I lived in and I didn’t
know what he meant by county, um, and then he said, all I can say is, um, I’m from Philadelphia and
when he said, oh, you’re from Philadelphia, um, I wanted you to meet my wife and then he introduced
me to Nancy Nowell. Nancy was the advisor of Philadelphia then. I didn’t know that, um.
15:23:19:00 – 14:24:19:01
Lisa: What group did she advise, Debbie?
Debbie: Speaking For Ourselves, um, in Philadelphia, um, cause she was telling me, it was brief, it was
brief, um, he was telling me about, um, just saying he knew about this group called speaking, um, he
told me his wife was an advisor of this group called Speaking For Ourselves, uh, and I didn’t know the
group, I didn’t know anything, um, and, you know, Nancy introduced herself as, you know, Nancy
Nowell. Um, and then, um, I, you know, I didn’t know, at that time I didn’t know, I still didn’t know about
speaking. I didn’t know about the group. I didn’t, you know, until I met at the workshop, um, one of the
member’s, Richard Young and Richard took me to the first Speaking For Ourselves meeting that I went
to in Philly.
15:24:19:21 – 15:25:07:09
Lisa: Debbie, I’m wondering if you can tell me about that first Speaking For Ourselves meeting that you
attended.
Debbie: Um, I was very scared. Uh, Richard, um, introduced me, uh, you know, um, he brought a new
person in which was myself. I didn’t, um, know anybody of course. I recognized Nancy, and I believe, um,
and I think she remembered me. Um, and Roland Johnson was the president then. Ha, ha.
15:25:07:29 – 15:28:04:20
Lisa: Can you tell me about your first impression of Roland Johnson?
Debbie: Ha, ha. Um, Roland, um, he welcomed, you know, he is very, it was scared at one time because
he asked us to introduce ourselves and I was very shy still. Um, you know, and, um, you know, I
introduced myself, uh, and, um, Roland was, was a leader. It’s amazing how, I mean, we had a pretty
good size group, I believe and he, uh, he led, um, like a leader is, uh, and I felt very, very welcomed by
him. He somehow figured out how to make me feel welcomed and involved. Um, I also threw out a lot
of good questions, um, about, and when I started to learn how to speak, speak up what I had to say, uh,
he, you know, was very impressed by it. Um, cause when it was time to ask questions, I asked a lot of
questions about the group, um, and do they have a brochure and things that, and, you know, the
questions that I asked he felt, um, and the group itself felt, well, I’m very impressed. This girl has a lot to,
um, you know, and from that first meeting I think I found my calling. Uh, cause I was involved with
meeting other people like myself cause I didn’t think there were other groups out there or people in an
organization of, you know, people like myself, um, and in a group like this, like Speaking For Ourselves
and what Speaking For Ourselves stood for. Um, and I figured out my calling I think. I should say Roland
figured it out for me before I did. He really did.
15:28:05:00 – 15:29:40:05
Lisa: I’ve heard that Roland was quite a presence particularly when he had a microphone.
Debbie: Ha, ha. Yes. He would hold it like this and yes.
Lisa: What was it like to be hearing Roland speak?
Debbie: I’ll put it this way. Um, put Gandhi, Martin Luther King and all the great leaders you could think
of in one big row and sit them up there and just love to, uh, and what Roland had to say was very
important. It was right on target. Uh, in a way was very, very, um, and people, he, um, and he had
somehow had the room and people listened to him and heard what he had to say and they respected
him for it. They, they actually, I mean, they actually listened to, they actually paid him attention but he
knew how to work the room especially if somebody was shy or people that and always looked out for
folks with disabilities and made sure that even if they weren’t in the audience somehow someway he
figured how to make them feel comfortable and also to speak up for the first time and I’ve never seen
anything like that.
15:29:40:06 – 15:31:27:20
Lisa: Why do people listen to Roland, Debbie?
Debbie: I think what Roland had to say were very important, um, and, and I think he was already
respected, I mean Speaking For Ourselves has been around since 82’ so they were around before I was
even, I even came into the organization. So, you know, they were very well-known, they were popular, I
mean, and Roland, you know, spoke truth, said what he thought and be respected, um, and I think
people, um, you know, knew he was right and he stood by as words. It’s not just words. Roland was the
type that stood by everything he said. He put it in action as well as made anybody else up that they
should of, you know, he was proactive. Uh, he was, you know, things that he came up and thought of
and, uh, who’s in charge. He made that happen. Uh..
15:31:28:22 – 15:34:37:08
Lisa: Debbie, what was his main message? What was the main message he was trying to get out there to
folks? Maybe there’s more than one?
Debbie: There is, uh, of course Roland was in Pennhurst, um, and his main message is, is to free our
people, um, and that, uh, the one that sticks to everybody’s mind is who’s in charge. That actually came
from Roland and Everyday Life concept even though he might not have been around for some of that,
that actually came from Roland. He challenged the first, when we first did this he said, when that, when
folks didn’t bring people to the conferences, um, professionals, he challenged everybody in that room
that the next year I want to see self-advocates at this conference and believe it or not the next year it
happened. Everybody brought self-advocates to the conference. I’ve never seen that happen before and
I asked Roland to teach me. To be my mentor to teach me. I actually, we took cabs. He had to know my
family, he likes the Phillies, uh, you know, he did a good Darrell Dean. I wish I could’ve caught him on
tape on Darrell Dean. He, yes it was delirious. I wish I had videotape. If I find it I will show it to you. It’s
just so delirious. Um, but he, he stood up for his members, people with disabilities. If anything, anything
happened to them they had to answer to Roland and I wouldn’t of wanted to be in anybody’s shoes
when that happened because he was the type of person that made things happen and anything that,
and loved kids. Oh my God, um, he loved kids, uh, anything, anything that he heard that happened to
any person with a disability, it was some action and how, how he, uh, you know, that’s when I got into
this institution stuff. I think, um, uh, because of Roland. Um, and he wanted us to do that. That was his
main thing cause he came from Pennhurst.
15:35:08:16 – 15:36:52:01
Lisa: So, of all the many lessons you learned from your mentor, what stays with you the most? Maybe,
what are some of the most important lessons you learned from Roland?
Debbie: Uh, I believe I learned, um, that you can do anything if you put your mind to it, um, or like who’s
in charge, um, and how much freedom was, uh, when I first learned about institutions cause Roland and
Mark took me around, um, my first couple of months in Speaking For Ourselves, uh, to see what
Pennhurst was about and told me and we were riding around in the grounds, around the grounds. I had
no idea but Roland was in the backseat and he lived in this place. He lived in that but yet for him to have
the courage to go back there when it closed and I was in the front seat and he was in the backseat and
Mark was driving and to ride around in Pennhurst, outside of Pennhurst and to listen to what Roland
had to say, that took a lot of courage.
15:36:53:23 – 15:39:48:20
Lisa: Debbie, you, we’ll talk a little bit more about that work cause it’s important but while you were not
in an institution yourself in your childhood, when you are at Speaking For Ourselves I’m sure you heard
so many stories from members particularly given the fact that Roland was encouraging people to speak
out about stories of their own experiences in institutions and I wonder how that impacted you to hear
all the stories of your friends and co-members, um, having these?
Debbie: Well, it’s interesting that you say that because my first year at, um, my first time being
president in the 1990’s, um, it was six months after Roland decided not to run, I became the president of
Philadelphia and first woman president so he threw me up the ranks really quick like. So I, I was faced
with a lot of folks that was, a lot of our members that came to the chapter was in institutions and my
first year I was faced with the abused. I saw it when they came to the chapter meeting. My members
challenged me. They came to us telling us things and told us to come to see them and to get them out
and what I saw and, um, you know, one of the members just stood out and said come, um, come to visit
me and that’s when we went to this institution. Um, and, you know, and also to work on getting, I also
told them that we need to get your story out. We need to get, your story need to be told but we had to
figure out a way to be safe. How to do that, I, we, we had to protect the members. Um, by them telling
their stories and there were some horror stories. When we did our first newsletter, the Speaking For
Ourselves newsletter, uh, all I could, between anger and being, I was blown away. I, my emotions, um,
and, you know, thank God Roland was still teaching me then. You had to put this in check.
15:39:49:08 – 15:46:23:06
Lisa: Debbie, you said you wanted to keep some of the, wanted to be sure your members were safe
when they were telling stories. What do you mean by that?
Debbie: Well, when the members started feeling comfortable telling us things, I mean horrible things.
Things that were still going on, um, we needed to figure out a way for them to tell it and for us to write
it and we knew the consequences and we let them know there would be consequences if we did write
this and I had to get, um, Roland and speaking, I mean they knew Nancy Thaler, people, um, that the
folks will not be, we had to, um, first of all we had to go down there. We had to give them some kind of
guarantee. We had to get permission, we had to get permission. Um, we kept on top of it, um, going
down to this institution on a regular basis. We had to get, uh, Judy Gran involved. There was a whole lot
of things that I didn’t know we needed to put in friends of the court. We had to figure out ways, we had
to call in some, uh, some help and Roland and speaking knew a lot of people, I didn’t. Uh, so we had to
figure out, you know, so we called in a lot of the supports that, Judy Gran, uh, Bill West, um, so we
needed to but also go down there on a regular basis to make sure and report stuff but when we found
out, when Roland found out one night that no one has been down there, this one particular institution
in a couple of years and we had I believe, um, Judy Gran was there, I was there, Mark was there and I’m
not remembering who else and I know Roland was there and there were babies in there. I’ve never seen
babies in an institution in my lifetime. I, I walked in there, I, that took me out. And with Roland being in
there too and saw a kid get hit, um, how in the world he got people from the state, Steve Eidelman on
the phone the next thing I know we are meeting with all these people, head of Harrisburg and I don’t
know how he, he got this big meeting together and we just, they talked around it and I believe Steve
was around then, um, yeah Steve was cause I, he was the first time I met Steve Eidelman. Uh, and I was
in the front. All I, all I could, I couldn’t and we all, all three of us that was there, Mark, me and Roland
said we went to this institution and found out that he hasn’t been down there in two or three years. It
flipped him out. I couldn’t say anything. All I was, I was in tears. I was sitting there crying still, uh,
because we went at night, we went at night and they were talking all this stuff. I said, we, Roland just
went off on these people and said now Steve, you know, now, I mean, he just took it over and Mark and
I was just, I mean, we told our story but Roland wasn’t going to hear it. People got run out. I want you,
you to come down here to see what we saw. He just like told them. Me, I was just, the only thing I could
do was say I was the first, you know, and turn my head and they just saw me in, they did was want to
know why I was crying. I said, the only thing I can say is what I saw. I was in tears. You folks have to
come down here every and what Roland ended up doing and Mark ended up doing, every single person
there, every single day they were going to go down there and every week, every couple of days we’d
come back and report and when that started happen everybody witnessed the same thing we did. Saw
it, heard it, you know, we had a commitment from everybody on the state, everybody that, everybody in
the room, people I don’t even know committed because of what Roland and Mark and I witnessed, um,
and they went down there every day. They had to send their staff down there to see what was going on,
to hear, it was remarkable. I’ve never seen anybody could move a whole room and say you got to get
down there, you got to get down there today. Tomorrow they could be all dead. It, I’ve never seen a
room move like that and every day staff went down there, though they sent whoever from their, um,
but everybody went to this institution, um, we, every day had somebody down there to make sure our
members, we gave them a list of our members. We said, now they, they’re our members. They need
protection. They come into our chapter meeting abused up. This is, this is, this is not going to fly
especially with Roland and Mark. We just decided to, um, they needed protection. We needed to get
protection for these folks. PP&A, we had all the, it was something.
15:46:23:15 - 15:47:51:11
Lisa: So Debbie, I want to clarify a couple of points if I can because what you’re talking about is so very
important, so very important to the history of this movement. Um, you talked about keeping people
safe so I just wanted to clarify. Are you saying that some of the members of Speaking For Ourselves
were in, were residing in institutions while they were members of Speaking For Ourselves?
Debbie: There were, they were living, they were living in institutions and this one particular one, most of
our members came from. Um, it was in the Northeast, it used to be called Pine Hill but it’s changed now.
That’s the first one I’ve ever been at, that I was asked to be at, um, and Roland was still, you know, in
speaking, um, you know, I was being, he was mentoring me, helping me with my presidency but, um,
most of them, um, came from that one, uh, and we were requested, um, by one that was very
outspoken and the rest followed and then we came to visit, you know, and that was the, actually that
was my first one. Me personally, myself, that was my first ever one that I’ve ever walked in, seen
anything like that.
15:47:51:27 – 15:49:03:20
Lisa: So, you as the president certainly of Speaking For Ourselves, Roland, um, and his ongoing role,
Mark Friedman as an advisor were challenged by the members and by Roland himself to visit institutions
and see what conditions were like in Pine Hill.
Debbie: Right. Yeah. Roland been in a institutions and witnessed all of those things that I’ve never have,
uh, as the president of a chapter, um, that, um, you know, Roland gave me the, uh, the role of taking
over that, what, with him being there, yes, uh, that’s why I said when I was the, um, president of the
Philadelphia chapter in the 90’s I believe, uh, that was my first, um, my first one.
15:49:04:01 – 15:51:12:01
Lisa: And Debbie, describe to me that first visit, when you first went to Pine Hill.
Debbie: I was stunned, I was stunned, I was dumbfounded and I’ve never seen anything like it in my life.
I, I couldn’t, there was no words you could say besides the smell in there. It made me sick. I’ve never
seen anything like it. You know, and, you know, Judy Gran asked us to be friends of the courts, um, you
know, we took on someone to visit every time. Be it an advocate whatever we needed to be or
whatever that person needed to help get the folks out of there and hope to close down and not have
the children, um, we worked on getting, uh, no condition for children to be there, they were kids, babies
in cribs with nothing on in the middle, I don’t know what time we got there but it was to me it was in the
evening and to see stuff like that, I, I was really but, um, you know, Judy Gran was there with us. We was
trying to calm down Roland, he really just saw it and, uh, somehow he got on the phone and the next
thing I know we are meeting with Steve Eidelman and company. Ha, ha. I have no idea, he just somehow
got them, woke them up and sometimes he tells this story how he got the call and we met with him and
it just, uh, huh. That’s what I meant that he was, he, proactive. That was, I’ve never seen anything like it.
15:51:12:17 Lisa: Now Debbie, you were given, um, you as president of Speaking For Ourselves, the organization was
given a grant by the office of developmental programs when Nancy Thaler was the deputy secretary, I
believe to visit institutions across the state and so I wondered if you could tell me a little bit about
getting that grant and what you are charged to do.
Debbie: Well, what I, what I, well, Speaking For Ourselves was meant to do was to go visit statewide
grant, um, and visit all these institutions and, um, to, um, and see for ourselves who probably wanted to
get out, um, and but we also had to be very careful, um, uh, and what we saw and reporting it but, um,
because, uh, we, when we, um, and this was, um, also, uh, we also had to put a lot of travel time in it.
Um, we also had to do a lot of preparing, um, cause of what we had to see and what we could, you
know, um, so it was a team of us so we broke up in teams, uh, and, um, uh, that was, um, because we
told Nancy that we wanted to get, um, people out and we know folks wanted to get out, uh, and
because Speaking For Ourselves was an advocacy and also, um, we wanted to let people know what was
out there or just hear what they had to say, um, because we did a newsletter also on the institutions.
Um, so, and, um, uh, you know, and also, uh, let them know that who we were in the process so if
anybody wanted to get out, um, and also building the chapters as well, um, in the five areas, uh, and,
um, and cause we, um, we really wanted to, um, let people know if they wanted to get out that there
were, uh, other choices but basically just to see, um, and hear from the members themselves. Um, we
didn’t believe the people didn’t want to just get out. We knew that, um, you know, nobody really asked
what they wanted or what, you know, and basically what I did was basically listen and, you know, and
we had to figure out if we saw certain things how, um, we were supposed to report those things without
getting the person into some trouble or punished. Um, and no one has ever done it, um, but we also had
to get permission from the head of the institutions as well because they had to set up the visits for folks
to take us around
15:56:41:12 – 15:58:44:01
Lisa: I wondered if you could tell me some of the other state people who were involved in those efforts
or advocates.
Debbie: Well, Speaking For Ourselves was the lead, um, and we also involved, uh, all the state directors
that, um, that was in charge of the institutions cause they set up the visits and who was supposed to be
taking us around, um, and, um, I was going to say I think, uh, Bill West was back then and also, um, I’m
not sure besides those, you know, um, I know Bill West and maybe, um, Judy Gran was always involved
in stuff, in our stuff as well but since the grant was from speaking, we basically and a lot of our
members, uh, as I said we broke up in teams. We had to stay overnight, uh, we also had to prepare like I
said and have team meetings so people can, so we needed to be prepared, uh, cause of what we were
going to see, um, our, um, you know, walking in stuff, in people’s homes and, uh, seeing things and, uh,
that affected all of us in a different way as well, um.
15:58:44:08 – 16:01:25:26
Lisa: How did it affect you, Debbie?
Debbie: Uh, it affect me but, um, as the folks that I met and, you know, in wondering how they even got
in the institutions cause some of them were very intelligent like a man could talk just like you and I. Uh,
and, um, it was nothing, there were nothing wrong. I could not understand, you know, being, I guess
cause I’ve never been in one but how, you know, how it came to be. Um, and, you know, some folks,
you know, came up to me and said, how could you come home, go home and I have to stay here or they
would come up with comments and it affects you. Um, you know, um, it’s almost like being on the other
side of the tracks, walking in my shoes. That’s what I would never have walking, just imagine, um, what
happened to Roland in Pennhurst. I can never walk in his shoes, uh, or anybody else’s. Uh, you know, we
try to do is make people’s lives better and let them know the things out there or hear their side of the
stories, uh, because over time we came up with this other thing, um, to spread the word and get, um,
we did another grant in getting people stories, only institution stories because their stories are never
heard. Not the way they want to tell it. I mean we hear stories, what professionals say about problems
with all their families but have we ever actually heard it from their mouths in their ways.
Chapter Three: Freedom Committee and Roland Johnson
16:01:27:01 – 16:08:27:15
Lisa: Debbie, when you were the president of Speaking For Ourselves you led a freedom committee.
Debbie: The freedom committee, um, came because of Roland and that was another step of, um,
getting connected, staying connected with the institutions and the main purpose. Um, Roland, one of his
main goals and he’s always said it and it stuck to everybody’s mind that knew him. Free my people. I
want institutions closed, every single one. He made that loud and clear in different ways. Um, and so to
continue his memory, um, I, you know, after I was, um, I believe and I’m not sure, um, when we started
the freedom committee was a while ago. I’m thinking it happened after Roland passed or around that
time and what happened was it came out after he passed and then I was invited to a very special, um,
memorial. His family, only family can go. At first I was the only one invited and Mark, um, and my
mother was invited to the hospital. I was the only member that was invited to the hospital. I couldn’t go
in the room when he got hurt and the house got burned. Um, I, I just couldn’t bring myself but I, by
family, the family wanted me there every single day and until after he passed I was also invited, um, to a
special memorial, a family, um, only the family, um, usually are invited to this, um, it’s a family
memorial, kind of personal and I’ve never been invited to one of them before. Only the family go to
them. You’re not, it’s not open to outsiders or anything like that but only a few of us like Carol Nettleton
was there. Uh, you know, and somehow, um, I don’t know, I remember I was still living on my own and I
don’t know, somebody came and got me, um, and I was asked and I really did not, I was doing
something and I was asked to go to this, you know, Roland, I really didn’t want to cause I had to grieve
my own way. I was asked to by family to come to this, the family private memorial service or, um,
private, um, as private as could be and being the only member that I can remember being there, me and
Mark, I think mark was there. I know Carol was there. I, I know cause she was sitting next to me. I didn’t
know but one of the things when you asked me what stood my mind, I just remembered. Before Roland
passed he said the most strangest thing to me and I’m surprised I forgot about it cause just thinking
about it is significant. He said Debbie, he said to me one day you’re going to take over speaking, you
know, I, I won’t be there, I won’t be here when you, you know, you’re welcome to take over for me, uh,
like passing the torch, I’m passing the torch to you. I see that you’re going, I’m going to, you know,
you’re going to be, um, be the president of Speaking For Ourselves and run Speaking For Ourselves and I
had no idea what he meant or what he talked about, what he saw. He saw this in a, like a Martin Luther
King dream. Uh, I have a dream kind of thing and he said it, I have a dream that I’m going to, you know,
like he was, he knew something was happening and, and almost saying I’m passing the torch to you and
exactly that day, that one perfect, one, um, the families memorial, um, probably the Memorial service
for Roland as I think I was getting ready to leave or walking up, Laverne stopped me right in the middle
and gave me this white thing and only thing she said, she handed it, she said, my brothers wish was for
me to pass this torch to you. And I looked at her and said what do you mean he passed the torch? He
told me to pass this on to you. So actually he passed the torch on to me to continue his work, to fight for
folks, to advocate, do what Speaking For Ourselves was meant to do. Get people out of institutions, um,
to have, to teach them, have the control of their life, who’s in control? He said that in all his speeches
and, and he always said we’re in control, we’re in control. We always said who’s in control? You are and,
and he had a whole audience say that and that goes on and on and on.
16:08:28:23 – 16:11:06:29
Lisa: Debbie, when Roland passed the torch on to you. Um, after he passed did you feel ready and able
to pick up the torch and lead the organization?
Debbie: No. I was in, I was, I was a total wreck, I was, uh, I’m one of the ones that took it the hardest of
anybody else. I couldn’t go into the boardroom. I couldn’t, anything, any place that Roland was at, I
couldn’t walk in the room. I couldn’t walk into our office. I, it was hard, it took a long time for me to, uh,
get over Roland’s death. You know, I had the family and sisters’ support and Speaking’s support, we
were all grieving and Mark took it very hard, very hard. Nancy, the kids, uh, cause he always stayed at
Nancy’s house on the weekends, playing with the kids when they were small. Nancy used to take him to
church. Mark took him to church, spent the night over at his house. Uh, so we all took it hard. We even
grew a tree at one of the farms that we were at, um, that we used to go to on our retreats, um,
Fellowship Farm. We grew a tree right there for Roland. Um, we planted a tree and I was totally wiped
out. I was..
16:11:07:12 – 16:11:38:18
Lisa: So what made you go back to the organization?
Debbie: Well, I was in there, I was just grieving. I couldn’t just walk into the room yet. I couldn’t do
anything else but I just where, I remember Roland places where Roland were, was when Roland, um,
those are the places I had a hard time going into. Um
16:11:39:03 – 16:13:31:00
Lisa: So, when did you feel that you could pick up the torch again?
Debbie: I think, um, when Karl Williams and the national group as I didn’t, I forgot to tell you that Roland
and speaking house started self-advocacy becoming empowered. Roland and Nancy Ward did it
together. Roland was the co-chair. Roland pushed that national. Was very involved in the nationals SelfAdvocates Becoming Empowered so that was his family too. Uh, actually we were the first ones,
Speaking For Ourselves with the Freedom March. We were the only group in the nation that had an, that
started closing down institutions and the states figured out, um, looked at, for us to help. How we did it,
um, how we started the Freedom March, uh, because we were the only ones that figured out how to
close down institutions and we did it. Not every one but, you know, and it went on statewide. That was
Roland’s doing.
16:13:31:01 – 16:19:44:20
Lisa: Would you say that that was, that closing institutions was Roland’s legacy, Debbie?
Debbie: Yes, but and when we, when Karl, when, I guess when Karl Williams with near-death and I
helped him come back into his songs, remember Roland liked to sing and we came up with the song for
Roland. I think that healed us, a lot of us that really knew him. I think it, you know, with the Roland song
that helped out a lot and we made a tape, Karl Williams helped us, he helped with songs, with the
national songs and speaking songs. I think that, um, helped us a lot, at least helped me and with a lot of
support from my family cause my family loved Roland to especially my mother. She adored Roland. We
used to have him, she used to have him over to the house all the time for dinners or whatever before
we had Paratransit going out to Plymouth, we always took cabs. We always took, we found a cab guy.
Roland and I took a cab every time. We were always, but he was always, he always involved us, Roland
and my family. My brothers knew him especially like I said my mother adored Roland. She respected
him, you know, she reminds me if I gets off track she reminds me sometimes of what, you know, what
Roland would do in these cases or situations cause she knew him, she knew him. We always went over
to his house when he had a roommate even his new house when he was in Ken Crest. You know, and so
I had to go on, I had to, uh, I had to figure it out. He just didn’t give the torch to me, he gave it to
speaking. It’s not mine it’s the whole organization and I’m trying to, um, live up to his, what we were all
about and what he wanted and the mission or his mission, Everyday Lives, who’s in control and, uh, and
people out of institutions. So actually we’re the groups that started the closures in freedom committee,
in Freedom Marches, we had a national Freedom March. We started that. We were the first ones to do a
Freedom March and involving everybody and then he got to be well-known. One year we decided to do
a national march and everybody marched on the same day in all 50 states. You know, and the national
self-advocates becoming empowered, they’re going strong and I know that, you know, I helped get the
ball rolling in the different states by sitting right like ahead and having a discussion on how we should do
this but Roland honestly led the way, uh, through the strength of Roland, Roland and his family cause
they’re part of this whole thing. His family didn’t know Roland and that concept. They had no idea what
he did, they didn’t. We came up with a tape and gave it to the family. They was in shock that their
brothers did all these wonderful things and his family did not know. None of his family knew the great
man of Roland and what he could’ve been. He never shared that with his family and that’s the sad part
but at least I’ll always have the memories and the legacy for me to share these stories about Roland’s
life to people that don’t know him. Don’t, had that experience like we did and I’m glad Nancy’s around.
Nancy’s still is out there marching, sharing these kinds of stories, telling the story about Roland, keeping
the work around, alive. He, it’s not just me and not just speaking, everybody, Temple as well. Celia
{Feinstein} you know, everybody that knew him, he gave it to all of us to be in charge to do the right
thing.
16:19:44:26 – 16:21:55:02
Lisa: Do you think the young generation of up-and-coming advocates knows enough or should know
about Roland?
Debbie: Yes, that’s why I’m sorry you missed the play. We were hoping to try to get it, a movie deal
done. I’m sorry I, the gentleman that’s playing Roland wanted to interview me, to ask me about Roland
and it just, the days just never worked out but..
Lisa: Are you using the plays and interviews to keep Roland’s story alive?
Debbie: Yeah because people, there are people that didn’t, don’t know. There’s a lot of our members
that don’t know Roland. They didn’t meet Roland, they didn’t and the only thing I have is maybe some
videotapes or the stories I told, you know, Octavia is not around anymore. She’s passed on. It would’ve
been lovely to get her story. Nobody thought about her story. She knew Roland. You know, she was his,
uh, vice president of the board. Um, or Jerome Inuzzi who was very close and also from Pennhurst,
passed on, that knew Roland. Um, but if, you know, and that’s why we’re trying to get these pieces
together and hopefully, um, I can find some of that and play it for our members or that’s why I’m glad
the book is out there for students and is, you know, people are calling to ask for Roland’s book, uh,
getting it into the schools, getting it into the colleges.
16:23:44:00 – 16:25:47:01
Lisa: Debbie, you were talking about Roland’s legacy, um, certainly his legacy was closing institutions,
the freedom march but another part of his legacy, um, was his openness about his, um, HIV and I
wondered if you could talk to us about that and what it meant to, um, people with disabilities.
Debbie: Well, I mean, when I heard, when I heard about it, um, Roland didn’t come out to tell, tell me
about it. I was going through therapy then, um, when I was seeing Carol Nettleton, um, I didn’t even
know until my, one of my appointments with Carol Nettleton um, cause Roland has asked her to talk to
me, to tell me so my, um, my appointment, um, she, um, she told me in her office and I, um, I was in
shock and then I totally cried too, I didn’t know what, I was between angry, I didn’t even know about
HIV and I was in shock. I was speechless. There was a blank face, I was like, you did not just tell me this. I
was in shock.
16:25:47:22 – 16:30:17:16
Lisa: Did you ask Roland about it?
Debbie: No, actually no. The reason being is because when she told me there was a reason why she told
me. This is when, uh, Roland, this was a special request from Roland but when she said that if I, you
know, Roland asked me to tell you this and he wanted you to be part of his personal circle. Um, you
know, and what would that look like? So I had two things to think about. It wasn’t like, I was honored at
first and then I was in, um, I was in, I was in shock and him asking me, um, you know, to be part of his
life and I asked Carol why. I didn’t know how to talk to Roland after I found out this news. I didn’t know,
you know, first of all I had to accept it, you know, she asked me, could I accept Roland after finding out
he has HIV? And I guess I didn’t know what HIV was or she had to tell me, um, and also, you know, to be
part of Roland’s life in some way and I was honored and the only thing I can say that Carol was why me?
How did I get chosen or how did this ever ha…, you know, like I can remember a person with a disability.
I knew Roland a little bit but I didn’t know him in that, I couldn’t get around how, it was like I kept saying
something is up, something don’t feel right. I didn’t know the reason why, um, because there were
other folks, um, and very few of us, we were all involved in Roland’s life in different ways but I was like
the only member that I can think of involved in that way. In a way that everybody else was. Uh, we’re
talking about a person’s personal life, um, so a lot of other questions came to my mind and I agreed. I
asked Carol what would this look like, what, how, I mean, yes, I accept to be part of Roland’s life even if
he has HIV. Um, she suggested for me to go to classes to learn about it, to know what it is, how, what,
you know, so I could, you know, when they, when they, you know, when they had come out with it they,
um, HIV trainings or, you know, get us prepared for it. Um, yes, I agreed to it. I took on, I agreed and I
took care, I agreed to be his friend or a part of his circle, um, you know, and it was just strange being,
uh, part of a circle and me going to his first circle meeting, um, in, in circle.
16:30:17:13 – 16:32:30:20
Lisa: What did Roland do, Debbie in terms of sharing his own experience with HIV with Speaking For
Ourselves and their members?
Well, some, I’m trying to think of it, um, when Roland and, um, I’m pretty sure knowing in how close he
was with Carol Nettleton, I mean, she took all the care of him, um, medical stuff and all the other stuff.
Uh, I had to work this out through the therapist probably on how he would, you know, and, you know,
he just one day and I don’t remember what year was or, you know, and I, everybody was in shock and
angry cause he was in Pennhurst. This happened to him in Pennhurst. It, you know, and, you know, it’s
still one of his stories and he was interviewed by 60 Minutes and all that. It’s on his story, um, we, I
mean, we all, we, I, we all dealt with it in different ways and I think, you know, like Mark and Nancy and
those guys. I think folks knew before I did. I came in later. His circle was already, I believe it was already
developed and maybe Celia [Feinstein] was but I think Celia was part of his circle as well so I came in
later, um, I was just added, I was just added to it.
16:32:24:20 – 16:36:32:11
Lisa: Debbie, did he tell members of Speaking For Ourselves?
Debbie: Well, he told us I believe Mark and them had some idea but it, um, it came out gradually but it
came out in the wrong way of, you know, and we loved Roland so much and when he told us how it
happened I remember him going on the stage just out right and just, you know, in one of his speeches
and the room was in, you know, we all, it was in more shocked that Roland come out and said
something like that and more brave than anybody they ever met. I think it was the most bravest thing I
have ever seen anybody, uh, eventually and I think it was worked on overtime of how he was going to
do it. Um, and we, we loved Roland. We started hearing about these institutions and what happened
and I think how it happened to him, that’s what really got people in love with Roland and what it does
and it did for this man. I don’t even, we had to learn about HIV and go through the but he opened the
door for folks that had it and didn’t tell it and that took a lot of guts but we love Roland. We saw him as,
you know, Roland. We didn’t see anything different about him. We just didn’t, we just didn’t know that
this happened to him and when he told that, how it happened to him everybody was angry about it and
that’s what got into us doing the things that he really wanted was the institutions, making folks have
control of their lives. He lived an independent life he wanted, have his own house, his cats, his dream
house and he wanted everybody to have the same thing. And we all wanted that too for other folks but I
think because of Roland the way he was and the man he is for him to take the lead on something like
that opened the door for others and we all had to go through trainings and we all had to accept, we all
had to make the decision to be part of Roland’s life or not. Everybody that was involved in Roland’s life
like myself and folks you might be interviewing, um, we had to make that decision for ourselves. To
decide if we wanted to be and when it came out to stick with him, to be, to still support him even when
it came out and give him the support that he needed. We all had to make that decision, everybody that
was part of his life and in, in or out. A big circle, the small circle had to make that decision for
themselves.
16:36:59:17 – 16:40:18:18
Lisa: Um, as Roland’s health deteriorated, I know or I understand that he had to give up many of the
responsibilities at Speaking For Ourselves, um, that he was used to and I wonder if you can remember
what that was like for him?
Debbie: Well, we, um, as an organization, um, we had to make some deci…not make the decisions, it
just, we had to change things without him feeling that less important on a fly. Um, uh, we wanted to and
we didn’t do anything without Roland’s being there so he was there. He knew it was, you know, he
actually, um, had wanted to back down some. We knew Roland was still part of Speaking so we worked
around it, we really did. It, I, um, we really worked around it, uh, develop a no, um, we developed a, uh,
a different role for him. Uh, but still an important role not, you know, uh, he still was always at the head
of the table. We never took that away from him. Um, you know, and we talked to him, um, what would
that look like, what, I mean, like what would you want when he decided that he wanted to pass it I
believe to, um, Octavia so when that discussion happened, uh, we wanted to know from Roland and I
was always on his right or his left so no matter what happened Debbie was, my role was to sit next to
Roland at any, um, meeting, whatever the case may be. I was either on his right or the left so I was there
but not take, not to, you know, when I saw things changing then I could say something to him or, you
know, look at Roland and say, um, can I help a little bit or say something to him so that way I could help
whatever he was trying to say or whatever he wanted, you know, I was there and one of us was there,
um, but, uh, we developed, uh, you know, a different role for him on the board. Um, important to him
and he accepted it but he still felt that’s still important, uh, so it was a different role, yes, um.
16:40:18:29 – 16:41:19:20
Lisa: Interesting for you, the roles changed. He was your mentor.
Debbie: Yes.
Lisa: And towards the end of his life you were his support.
Debbie: Yes, in Roland’s way. You know, all until a point. You know, we were all there though. Uh, we,
because we had meetings, we had team meetings, uh, so we could be prepared. Circle itself, we had
meetings that maybe Nancy’s house or whoever’s house. We, especially when he had traveled together
or we had an event. There were, you know, the episode that happened in Canada. I can, it was like it
happened yesterday and so that was a very scary thing. And I haven’t even told that story yet.
16:41:20:27 – 16:42:12:11
Lisa: Well, maybe we’ll come back to that story but since we only have just a couple of minutes left in
this particular conversation, um, is there any thought you’d like to leave us with about what Roland
meant to you? You’ve spoken about him very eloquently but maybe there’s something you’d like to say
in summary.
Debbie: Uh, one word I can say is Roland was my hero of the disability movement along with Justin but
he helped me with my family support and I love my family dearly. Um, develop who and what I become,
um, I’m just very lucky.
Lisa: Okay, thanks. We’ll stop there for tonight, okay.
DAY THREE
Chapter Four: Freedom Committee cont., Speaking for Ourselves and Early National Self-Advocacy
20:11:34:01 Lisa: My name is Lisa Sonneborn and were conducting a video interview, a third part of our video
interview with Debbie Robinson at Temple University in Philadelphia, Pennsylvania on October 21st 2011
also present as our videographer, Lindsey Martin and Debbie, do we have your permission to begin our
interview?
Debbie: Yes, you do
20:12:00:05 – 20:14:14:16
Lisa: Thanks. Welcome back. Debbie, I wanted to talk to you, um, about Speaking For Ourselves again.
We talked a lot about your becoming involved with Speaking For Ourselves and your relationship with
Roland Johnson who was your mentor. Um, you emerged as a leader for Speaking For Ourselves very
quickly. You moved through the ranks very quickly.
Debbie: Yes.
Lisa: Can you, can you help us by telling us what positions you held in the organization?
Debbie: Well, um, I was the, um, I believe, I believe in, um, that, um, when I was at the chapter, the
Philadelphia chapter, Roland was there. He was the president, um, and about I believe six months later
which would’ve been probably, it was in the fall. I’m not sure when I, the date that I first came in and
met Roland. You know, into the chapter. I don’t know, it was in the fall I believe maybe around October.
Um, and I think it was about six months later when they were going to, um, elections, um, the chapter
elections, um, and, you know, Roland was very impressed with me so when they took the vote, um, I,
uh, became the elec…and the members voted, um, and including Roland, um, voted me in as, um, the,
uh, the president of the Philadelphia chapter. I’m not sure if I was the first woman president in that
chapter, I believe I was, um, so, um, in that fall, six months or seven months later I became the president
of the Philadelphia chapter after Roland, um, Roland Johnson and I believe, you know, Richard was my
vice president then.
20:14:14:28 – 20:15:11:10
Lisa: Debbie, what, why do you think you rose so quickly in the organization. What do you think Roland
saw in you?
Debbie: I have no idea because he saw potential I guess. You know, Roland never really told me what he
saw like I, he just in his mind potential, um, you know, things like asked the questions I’ve asked, uh,
when I first came to Speaking For Ourselves, um, you know, in my responses in the things I wanted to
know about Speaking For Ourselves. I think that impressed him. He saw something in me that I didn’t
even know I had that no, um, yeah, I had no, I had no idea and I had no idea what I was getting into.
20:15:12:06 – 20:18:03:25
Lisa: Debbie, what other positions did you hold at Speaking For Ourselves over the years? You started
out as president.
Debbie: Yes, and then, um, I went to, um, I went to a board meeting. I missed the first month or
whatever month I missed and I don’t know what happened, um, but the next month Roland was the
head of the table at, one of the heads, um, Nancy Nowell brought me in. I didn’t know, I was just getting
to know my advisor then, she was the advisor of the Philadelphia chapter then. So and I had no idea, it
was my first one, um, and, you know, even though I missed a month, I remember, um, when I walked in
with Nancy right away Roland just stopped everything and he got, I was scared cause Roland was very
strong then and asked me to sit up front and I didn’t have no idea what I was wrong, what happened,
what I did wrong and the next thing he told me was why did I miss one of the board meetings? I said
what’s a board meeting? I said to myself, what are you talking about. He said you missed October or
whatever month it was, I think I came in in November, um, I think I missed the October or September
one. And then he said I was supposed to bring a pen and paper. Then he turned over, Mark was sitting
right there. Then he turned over to Mark and said why did she, you know, why did Debbie miss this
board meeting. He was wondering what happened and we’re both looking at Roland like Mark don’t
know who I am, Roland. Nobody on this board know who I am in Mark says, I don’t know who she is.
And then he went to Nancy and cause Nancy drove me. It’s like wearing a dunce hat and then he told
Nancy, well, um, why didn’t you and then he says, where’s your pen and paper? I said what you mean
pen and paper. You’re supposed to take notes. What you mean notes? And I had no idea what I was
supposed to be bringing. And then he turns to Nancy and says, Nancy why didn’t you tell Debbie to bring
a pen and paper? I was, you know, you sit next to Roland and he’s just getting on Mark and Nancy for, I
don’t even know these people. You know, I’d never met, you know, I never, I never, I didn’t meet, you
know, it was my first one me being president, Roland’s sitting next to me and I didn’t know anybody on
the board. So
20:18:04:08 – 20:21:36:26
Lisa: Later you served on the board. How did you serve on the board?
Debbie: Um, I started coming, I started, um, getting, going every month, um, uh, you know, um, Roland
made sure, um, and he saw again, Roland, um, saw something in me, um, and mostly there was a lot of
men on the board. I mean Nancy was there, there were, you know, uh, um, and I, you know, I guess I
was the president for, for, I, my first two years and I think after that, um, I, um, he wanted to give me
this experience so I, I believe I, um, my first two years I was just learning, um, so I had a lot to learn and
that’s actually when, um, you know, in that president, um, for the chapter that was my first experience
even dealing with institutions so I had no idea, um, about institutions but I learned that through the
chapter. I went, I think it was I believe it was the third year, um, and the board had an election, um, and
I had no idea what I was getting into, God knows. Who knew about boards and I’m just learning about
Philadelphia. Um, Roland, the board and I had to step out of the room, you know, I believe Roland had
some influence, strong influence. Nobody would second-guess Roland’s, um, and actually I, um, was that
first time I ran against or was it the second time. I might’ve been the first time when I ran against Steve
and that was, uh, and Steve had a crush on me around that time when I first came on the board. Yes he
did. I had no idea so, ha, ha, um, uh, but then the election took place and the next thing I know the
board voted me in as president and I had no idea what I was doing and I almost had an accident in my,
uh, you know, I, um, I had no idea and I’m looking like, oh my God what did I get into? I had no
experience, nothing. I came from New York, I was a New Yorker. I had no idea what I was, Lisa, I didn’t
even had no clue what I was getting into, none. No experience, nothing. I was an outsider in here and
find out that I was the first woman board person, board president, um, the first one. And then we had
the newsletter. They had my picture on it when I was a younger, when I was younger and I was, I had a
picture of me, um, and they had an article, um, the first woman president, um, so you might as well say I
broke the mold. Uh, knowing that I didn’t know what I was getting into.
20:21:37:14 – 20:27:17:10
Lisa: Debbie, while you were the president, later board president in Speaking For Ourselves in many
ways you guys continue to break molds. You had mentioned a little earlier, um, hearing stories about
institutions and in fact, um, you had actually or Speaking For Ourselves received a grant from the office
of developmental programs while Nancy Thaler was in office to visit institutions around the state.
Debbie: Statewide, um
Lisa: What did, what did you do on those visits?
Debbie: Well, we had to, um, I remember us, um, in that grant I remember us, I had to, she also set up a
meeting, um, when they had the state, all the state directors. There was this state director’s conference
or meeting and Nancy invited us to be there. The only way you can get on there or we were invited to
talk and we, um, and Nancy introduced us and, um, we, um, went to the state directors, um, you know,
cause they needed to know who we were and it was to set up, introduce ourselves and introduce them
to set up visits, um, to visit these, all the institutions so we had to break up in teams. Um, you know,
how would we, uh, you know, uh, and we had to, um, you know, you know, and it was, it was a journey,
um, and we, um, with the state directors and, uh, and so, um, when we set them up they gave us the
contacts and who to contact into the institution to know that it would come. So they knew we were
coming. They had somebody there in the institutions to show us around and introduce us to people, um,
you know, to visit the different, you know, and, um, and we were to visit all of them so that, so I was
staying overnight, um, and we also had to prepare ourselves. We had a lot of team meetings, um, cause
it, we had to learn how to travel together so, um, you know, Mark, um, and Tom was driving so we had a
couple of drivers and I’m trying to think if Nancy was with us then. I’m not sure if she was but, you
know, that and then we, um, you know, that, like I said the staff showed us around, introduced us to
people. Um, we had to be very careful on what we saw and what we could, you know, for the safety of
individuals and like I said, um, we had to prepare ourselves to what we needed to do and what it we,
you know, and what we can say, you know, without getting anybody, um, into trouble or, you know,
things we saw and things, um, you know, so we, um, afterwards, um, speaking, um, I mean that took
weeks and weeks. We, and we all got together after, after each one we, you know, we had to go into the
hotel or what, get together at some point cause we had, like I said any institution we broke up into
teams cause it was so big so like I was with some folks and, you know, and then we, uh, you know,
basically we were in little teams because they were so big, you know, the institution we had to cover so
we had, we had to cover in different, different parts of the buildings and, and, um, you know, and take
notes in what we can remember and then we got finished and, um, and we did. We got together, um, at,
in each ones and we talked about it, we, we had to, we had to compare notes, we had to, uh, what we
saw, what we, what we could, what, you know, and we, we, uh, the teams got together afterwards, met
among ourselves to get, um, we had assign the team leader to report to each of our teams to, um, you
know, so Mark and, uh, Tom and I don’t know who else but what is I don’t know was, Jim Conroy, um,
but we had a couple of people with us, um, and we had to get our notes together and get it and get a
report to Nancy in a way where, uh, you know, Saw and how we handle certain situations, um.
20:27:25:10 – 20:28:08:20
Debbie: Cause Mark wrote, uh, I mean, um, Mark, um, wrote out the grant and we, um, you know, and
we, I was at the table with Nancy when we put together the particulars and what they wanted and what
we wanted to see as well and Mark had to put it all together, um, to get, Mark was our grant writer and,
um, you know, things like that so even though I, I was one of the ones besides Roland, uh, working
closely on, on, um, the particulars of the grants that we did.
20:28:08:28 – 20:34:18:13
Lisa: Debbie, what did you want to see when you, when you visited institutions? What were, what was
your goal for the residents?
Debbie: Well, at that time when we were doing that there was a lot of abuse going around. It was just a
whole lot of stuff going around. Um, and we, you know, there were, um, and we were basically wanted
to see if we could get people out but also show that, um, know, how the dangers that people were in,
um, and we basically as Roland would put it, um, wanted people out of institutions and our argument
was cause we, we’ve heard a lot of abuse. I heard it firsthand when I was president of the chapter, um,
my first experience was dealing with, um, half of our members were from institutions, coming to
chapter and we did see a lot of, um, injuries, I mean, I remember this one gentleman, on one side of his
face, I don’t know if it looked like a black eye, he fell or what but I couldn’t like say, um, you know, and
on all I could say, all we could say is, um, we was concerned to make sure this young man sees the nurse
and, uh, see that, uh, and the staff told us that he fell. You know, so we saw things, I mean, on people’s
faces and we, um, and then we ended up going to the PAC and saying we wanted a certain amount and I
don’t remember what, of institutions closed. We marched in there and I think, who was in the head of
the PAC then, it wasn’t, um, Kevin. It either was Steve Eidelman or John White at that time. Um, cause of
what we saw we said we wanted a certain amount closed. Our findings in what we reported and
Speaking For Ourselves stood firm and said we wanted, I forgot how many we had, how many
institutions in Pennsylvania that was open, um, but, um, uh, uh, we just went in there and said we want
a certain amount closed and that’s it, uh, we went in there with, with a purpose and we stood by it, we
had other people, um, like Bill West, uh, he was a very strong advocate, um, with us till the end, um, you
know, because of people at the time when we went in, um, the horror stories, the horror stories and
then when we found out, um, about Woodhaven and that Temple owned part of Woodhaven we really
camped out. That really was non-accessible. Oh, I don’t, I mean, we came in the middle of the night with
sleeping bags. Yes we did, most certainly. I picked up I don’t know what time of the, and I had to bring
my sleeping bag. We was in the room and the parents were, we were going to stay there as long as it
took cause people were in at that time, they said people were being injured, died. Uh, they had this one
guy that supposed to go to the dentist and they got, the dentist just pulled his teeth. No nothing to
knock it out, no, he didn’t give him any shot, he didn’t give him nothing. The horrible things that pe..,
This was the time that the, uh, institutions in Pennsylvania were pretty bad. It was all over the local
news. People died, people were hurt, people were, there were no safety guards. I had to build safety
guards around our chapter and that was scary including, um, you know, when, when, when, when and
then they found that we had, they had kids in institutions and Roland and all of us went to Pine Hill and
saw babies in cribs with no, no cover, no nothing, no, oh, he just, that was un, unheard of. That’s just,
you know, us, Bill West, you know, we, we had enough. We had a lot of strong people, a lot of strong
advocates, a lot of strong people behind us, uh, we had Nancy come out. I even had Nancy come down
to our chapter meeting and look, we need to protect people. I said I will bring her down here. You guys
need to tell stories. We even printed it in our newsletter and it went statewide and I had Nancy Thaler
come down and I pleaded with her to come down to our chapter and hear these stories. She was
hearing these stories about, you know, what more can I say?
20:34:19:01 – 20:35:19:01
Lisa: Debbie, Nancy came and was very, very invested in your cause. How did other professionals
respond to you?
Debbie: Well, Speaking For Ourselves led the way through Roland’s speeches, uh, when, uh, Roland, um,
and people, most of our members, the majority of our members of Speaking For Ourselves, the majority,
I would say 90 maybe 95 or 97% maybe close to 100 been in some type of institution so half of, you
know, we were the only game in town. Half of our members, most of our members in different chapters
than the local chapters before we even started going out to Pittsburgh and getting Mon Valley into the
mix, um, most of the members, the majority of the members in Speaking For Ourselves came from an
institution.
20:35:20:04 – 20:36:24:26
Lisa: Did the professionals listen to you when you wanted to close institutions when you demanded?
Debbie: We demanded it. We had people behind us. We had to have the evidence. We had the
newsletter. Our newsletter spoke for ourselves. Yeah, I mean, it was more than, we led the way. We,
Speaking For Ourselves broke a lot of grounds, um, through Roland and Mark and people before me,
um, broke a lot of ground because of where they came from and I never came, I’d never been in an
institution but what I’ve seen and what I’ve witnessed and what I’ve gone through with other members,
the abuse, the heart ache, the death and God knows whatever happened to Roland. What happened to
him in Pennhurst was unthinkable and when I heard that that just started us on another path of
stopping the abuse.
20:36:26:06 – 20:37:04:19
Lisa: Debbie, you led a Freedom Committee through Speaking For Ourselves.
Debbie: From Speaking For Ourselves and that was one of the ones and I’m sorry and I think we did that
after Roland passed. I don’t think he was around, um, yes that was on behalf of Roland. That clearly was
his message was free our people, close these institutions down. It was all over the, it was there. There
was no if, ands, buts about it and somebody had to take the lead and we did. We took the lead.
20:37:05:03 – 20:40:52:10
Lisa: You took the lead and your lead spread. Can you tell me about the greater impact, the wider
impact of the freedom committee?
Debbie: Well, the Freedom Committee started out with me and Speaking For Ourselves and then, um, it
just grew on its own, um, then we, um, we dealt with, um, with Mr. Fairchild out in Laurelton or
wherever that was when they had, uh, one of the, uh, I can’t remember that. I think it was, uh, about
187 Bill, uh, he tried to stop us and, you know, the voice of retarded, you know, who was in charge of
that, okay, so it was us against the voice of the retarded, um, and, um, yeah, it started spreading
because we figured out how to close it, uh, if we didn’t figure out how to close it, we get people out,
um, mostly was too close and we dealt with the opposition, um, we had other people besides, you
know, we led the way but I can honestly say if it wasn’t for other groups like Visions, like, you know,
other people that believed in Speaking For Ourselves that knew us from the beginning and knew what
we were all about, uh, Bill West, uh, for of folks, um, I mean, we just got together in an office and said,
we, our, the final of this committee I had to work on, um, a statement, a mission. You can’t start, you
can’t start any committee without no commission. You have to have a purpose. You had to have a
statement so the first thing we had to do is come up with those things. Um, purpose, statement and all
that before we can, um, so we worked on that. Purpose and statement on what we were and we went
out and did what we had to do. Everybody that was on that committee, um, knew what we were all
about and then it spread, um, when we started the, um, the national movement. Mark and Roland and
then it really did spread because we started really getting notice about the closure of institutions so
other groups around the country, around, uh, we was getting calls from different states, from different
places. How did we do it? How did that happen? How, what we did and then when we developed the
national movement, um, and that was one of the things that, um, I remember going to a national
meeting, um, I wasn’t, you know, I was, I helped get it started but then Roland and Mark were on the
committees. I let, you know, Nancy was the first co-chair, the first chair, Nancy Ward. I’m sorry, I got to
say names, last names. If I remember their last names I will. It’s my fault but Nancy Ward was the first
chair of the National when they first started.
20:40:52:20 – 20:49:32:20
Lisa: Was there a name for that campaign?
Debbie: Um, Close the Doors campaign and I remember sitting across from the group and, um, we were
called in, Mark was already on there but I was called in and I mean, I wasn’t on the committee per say, I
just helped, I just sat in the wrong place at the right time and, uh, you know, sitting like here and a
bunch of folks, uh, I don’t know how, if I ever told you how it got started, um, I’m thinking, I’m trying to
think of who got us together in Atlanta that really started to getting the self-advocates together and
Mark might remember this better than I would. I just remember the names, um, that got us all together.
It was, I think it was in Atlanta it started, uh, and I can’t remember the person’s name but anyway we
were around the table with a lot of self-advocates and we were all talking about the same thing and
then, and then somebody came up with the idea, the person that got us all together and the name
escapes me and I should know it cause he’s very well-known. Um, he’s the one that gets groups together
and work on different things. I can’t remember his name. Well, anyway, um, we started talking and he
just said, you know what and we were all thinking that. You all need to start a national movement and
oh my God, then, um, and we were all thinking like, start a national movement. Are you kidding? Cause
we all, it made sense and then we were talking and said oh yeah, okay. And then, uh, as we were talking
somebody, um, in the group jumped up and said, well, you know, I’m having, we’re having in our state, I
don’t know if it was Denver or, I think it was Denver was the next movement. Well, anyway this went to
states to states, um, and, um, somebody came up and said that they were having a conference and said,
well, why don’t we start and invited us all and, you know, so we went to this conference and I’m
thinking it was Denver but I could be wrong. Roland was around then. That was my worst trip ever. I had
a very, that was my worst trip ever. I’ll never, it’s the worst trip but anyway, um, and, uh, if I’m right it,
um, it was Denver and then we started, we had and nobody knew how to get this in there. When they,
when they told us that, um, we were going to this conference and trying to fit us in there nobody knew
how to get it, what this even would look like, um, had no clue, had no idea and here I’m walking and I
don’t know which state it was. It might have been but to make a long story short, it went to state to
state to state. And then, um, I walk in and I’m already flustered and really having a very bad day cause
there’s nothing like when you’re trying to get yourself together and Roland Johnson is coming in the
room and you’re not yourself, you’re not even all together yet but darned if he came in the room and
that was the most, I had a rough time and it was, um, but anyway, I come into this room where I must
have been late because I was not, yeah, I actually must have been the last one so I’m sitting in this big
old chair, in the middle of the room and had no idea what I was, you know, like everybody else sitting
there waiting and I’m saying what is this? Um, well you tell us. I mean, you tell us what. Well, we’re all
here trying to, uh, I’m sitting in the middle like this is the, well, I’m looking at the chair so I’m saying, you
expecting me to start this off? And I’m already having a bad day in Denver. Uh, so we started talking and
talking and talking and I don’t, you know, and they’re first and we, and people was talking about it but
then, you know, then it got into the, well, how much is this going to cost? It don’t have to cost nothing.
If you having an event or whatever it, we need to get it, we need to have a national movement. We all
agree what would this look like? Well, money is attached. We got to, I had to get people away from the
money cause we haven’t even come up with a mission yet. We haven’t even come up with, uh, anything.
I said no and Roland kept saying, it’s not what, you know, what, you know, we need to start talking
about what it’s going to look like before we talking about any kind of money. What do you want it to
look like first? Get some ideas, you know, what do you want out of it? What would it be? You know, so
we started throwing around some ideas and something and ideas and ideas and then, like I said, went to
state to state and I think the final vote, we ended up going to California, um, for our conference and I
believe after all that, um, going to all the conferences and each conference that we went to we worked
on it, we worked on it, we worked on it, we worked on it, we worked on it and I can’t remember the
state exactly, um, and it ended up the final vote, uh, the final tally was at I believe, was in, um, I was
going to say California but I could be wrong, um, Denver could have been the last one. Well, anyway
either it, either it was in California or Denver. I’m not sure the end of the last stop we made, um, but
anyway, Roland, me, Mark was up in the front like sitting right there, in the front row and, you know, uh,
and, um, everybody, everybody came up was talking about it and deciding on, you know, how we were
going to get this thing started cause Roland came up to and, you know, he had to start it off, you know,
he loves the microphone. No way in the world you could get the microphone and Mark kept saying, why
don’t you get, I said, you must be out of your mind. I am not getting out of this chair and getting that
microphone away from Roland Johnson. I said no way. Roland liked the mike uh, he led it off and he
really wanted to push this. Uh, you know, to get the crowd going because, you know, uh, as Roland
would do, um, because he wanted this national movement. He knew how important it was. He really led
it off and then people after Roland, I said, oh my God and we were sitting up there, um, you know, we
all said our peace. Um, how important it would be and, but each of the states we went to, to get this
thing, I was the lead. I just had to, um, we were always on the agenda but I was the one that led the
meetings with Roland and Mark’s assistance and everybody else, advisers or whatever but they wanted
a self-advocate and I think Roland picked me and talked me into leading the meetings that we had to get
this started. So Speaking For Ourselves because of our experiences, um, and since we were one of the
oldest groups around we would know how to do this which we didn’t know cause we never had a
national thing before.
20:49:33:06 – 20:51:53:02
Lisa: Did you have one when you left the conference? When you left the conference did you have a
national organization?
Debbie: Yeah, at the end, um, California was the only one that wasn’t ready yet, um, I believe. Um, yeah,
uh, with the push, push, push, yeah, we did. Um, the votes of the states that wanted and we did. We
ended up having a national, I can’t remember the years and how we did the states to states. I think, um,
you know, Mark would probably remember, might remember more than I would. Um, but yeah, a final
vote, um, yes and then, um, they had whenever the next conference was or whatever it was, um, they
needed to form a, you know, um, a miss.., you know, they had to form a mission statement on all these
things that they wanted the national so we didn’t have a name yet. What would the name be? Um, it
was just the national movement, um, and I think the next big step was, um, you know, who would be
interested in, I think cause we all had to go so, you know, a couple weeks later we needed to decide who
was, um, and I know, um, Mark and Roland, um, because we had more experience. They needed Mark’s
experience. They needed Roland, um, and then the next state that had an event they had the national
on there and a set, you know, for them to work out things and they asked Speaking For Ourselves for
some guidings in those areas, uh, so Mark was on the board from the beginning. Roland was on there.
Nancy, somehow when they figured out how to do the voting process, uh, each of the states too, uh,
Nancy, um, Nancy Ward was the first chair and Roland was the co-chair.
Lisa: And what was the name of the organization?
Debbie: Self-advocates Becoming Empowered is now the name.
20:51:53:24 – 20:53:53:00
Lisa: Thank you, Debbie. I’m going to switch gears a little bit if I can? And, uh, ask you some questions
maybe a little more personal, um, as opposed to questions about your, your role professionally in
Speaking For Ourselves. Um, the more involved you became was Speaking For Ourselves and fighting for
other people’s independence the more dependent you are becoming personally, I think. Is that a fair
statement?
Debbie: Yes.
Lisa: Yeah. Can you tell me, um, about your own, um, struggles to get services here in Philadelphia. Um, I
know that you met with the city, um, in an effort to find out what services and supports would be
available to you and I wonder if you could maybe tell me about that first meeting.
Debbie:Well, it was a room full of people, um, that I really didn’t know, um, my mother was there, uh,
and like I said I did not know anybody but then we started, they started talking, you know, um, and I
didn’t understand it. um, and, you know, and when it was my turn and they were telling me how they do
things like having people with slots, you know, that it would, um, and, um, you know, ??? how they did
this, how you got in and I spoke up and said no that’s not the way I wanted it, uh, cause I was leaving
from home so I, you know, uh, that was a hard time as it was. I think, um, me leaving from home, going
on my own was the hardest between me and my mother ‘cause it was a strain. Um, she didn’t want me
to go and we had some battles so.
20:53:54:19 – 20:55:44:01
Lisa: Why didn’t she want you to go?
Debbie: Um, it, I don’t believe it’s not her fault. I think me being prepared and she did everything for me
so me being on my own I hadn’t know how to do things cause my mother and my father did everything
so for them to teach me things like you would teach your, uh, son and daughter how to do things that
they didn’t do on their own, um, cause of my disability, um, they would think I would either hurt myself
or, you know, something would happen so, you know, my mother knew that I wasn’t prepared and, you
know, she didn’t teach me how to do that clothes and, you know, and, you know, we went back and
forth and, um, you know, I, um, I didn’t, you know, I stood firm cause I remember a friend of mine that
his mother passed away and how he in a wheelchair just ended up after his mother passed and he called
me up one day and he told me his mother passed away, um, and the move that he made was just
incredible and all I could think of, I don’t want my mother to pass away before she sees me on my own,
um, and that’s what drove me to be on my own when my friend was talking to me that I met at the UCP.
CHAPTER FIVE: SELF-DETERMINATION
20:55:44:16 – 20:57:46:16
Lisa: Roland Johnson had always asked the question, who’s in charge? I’m wondering if you can
remember when you first heard the words, self-determination and what that meant for you.
Debbie: Well, who’s in charge when Roland, I guess when Roland kept saying who’s in charge, um, and
the self-determination, um, and that came out of everyday lives. Um, that concept of everyday lives, um,
and, you know, and Nancy and all the ones would tell you how that came about and, you know, Roland’s
all over the place so yeah. Um, so that actually came out of everyday lives first and then, um, when we
found out about self-determination was later on. We didn’t jump on the band, Speaking For Ourselves
did not jump on the bandwagon in the beginning like that. We did it a couple years later. It was still
forming but, um, we got on, we were invited to a conference that, um, Tom Nerney was at and it was
Carolyn and I and, you know, um, one of the self-determination conferences. Philadelphia was there,
people from Phil.., was their conference, um, Carolyn and I were there, Mark was there, um, I think
that’s the first time I, um, met Tom Nerney, um, and the self-determination is when me and Carolyn and
Mark and, uh, we came down to the self-determination conference. I forgot where, Minnesota, I believe
was in Minnesota and that’s where I met Tom and he met with us separately.
20:57:47:00 – 21:00:44:03
Lisa: What did Tom tell you that self-determination would do for folks?
Debbie: He had to explain it to us first. We didn’t like in the beginning like when it first came out, um,
like I said we didn’t like jump on it. Um, but Tom asked us to meet with him in his room at this
conference cause I think he wanted us to get on the bandwagon. He wanted us to maybe have a
conference. We had asked him a lot of questions, um, you know, and what did self-determination would
look like, um, we also needed to be educated so if we even got into it we needed to what definitely we
were getting into so, you know, um, we had a short time with Tom because then he, um, said well, um,
then me and Carolyn got together and said we know there’s Philadelphia folks at this conference so
they, we all, this was all about self-determination. Um, and so later on in that evening we all met with
our fellow, our, you know, everybody that was there at Philadelphia conference, Ann Marie, there was,
you know, people that were there, um, learning the same things we did so we all got together. We also
asked Tom to come and we got, Tom suggested that we should get in touch, we should meet with our,
our states which means, you know, Carolyn, I and Mark met with folks that showed up at this
conference. Um, I think we had Tom there, I’m not sure but it was late at night. It was, I can’t even begin
how late we were talking, um, and I think we had a commitment then but we didn’t know what, um, and
me and Carolyn met with Ann Marie and whoever it was there, um, at this conference and we started
talking about it, um, and what Tom mentioned and then, um, we got permission from Philadelphia and
we needed to, um, form a committee, self-determination committee to start this cause we had no,
yeah, but we had to get some more training. We had to get more educated. We needed to get, you
know, I mean, we needed to learn from the best. How would this look for us to form a committee we
had to get folks, um, more than was interested. We got a commitment from the County, um,
Philadelphia County.
21:00:45:15 – 21:03:14:27
Lisa: Debbie, what they were talking about, the self-determination was really a fundamental shift in
power.
Debbie: Yeah, I mean that was a big shift, um, back in those days cause we didn’t have the power. Um,
the thing was, the scary thing now is that what we didn’t teach people would, if I know what I know now
I probably would’ve done this a little differently because people, self-advocates never had, didn’t even
know what control was. They didn’t even know the simple things of making decisions. Had no idea or
how to and how we got them prepared for. To me if I had to look back at it, it wasn’t enough, um,
because self-advocates that really started the self-determination and got into it, you know, um, because
they never were taught the basic in the beginning cause everything was controlled. Was either run by
the agency or, you know, or they didn’t have no say so. They didn’t even, half of them didn’t know what
their budget was, didn’t even know what a ISP or make decisions of what they wanted. The problem
they had was people didn’t know how to make decisions, the simple ones. They didn’t know they could
because of what we heard was if I made this decision that I wanted to do this, I’m going to get in
trouble. They were all afraid to say, speak up and say what, I don’t want, um, to, uh, cereal and I want
pancakes because people didn’t know how to make the basic decisions and knew that they could
without getting in trouble and we also had to educate the professionals and that’s where it got to be
even though the County of Philadelphia, County was in back of us, we still needed educate them
because they were in the mindset of people, wow, this was a big shift and they didn’t even know how to
handle it.
21:03:15:16 – 21:06:39:00
Lisa: What would you have done differently now that you’ve been able to look back?
Debbie: I think I would have done, uh, more prepared, uh, more, you could say more training as you can
but how do you teach somebody that never was taught to make decisions on the basic? They never did
it in their lifetime. How do we do that? I would’ve had to figure it out. I would’ve had to maybe start
with the simple stuff maybe okay, um, if we had let’s say at our meetings and we didn’t and we said, uh,
what do you want to eat and they said, well, what do you mean, I don’t know what you’re talking about.
Well, just say what, cause were going to order some food. What would you like? And they would be
dumbfounded because they had never been asked the simple things so when you ask somebody
something simple and let them get in the habit of, you know, I did this. It’s interesting that you’d say
that cause I have to tell you this, Lisa. We took seven people out of Woodhaven, took them to our
retreat, Fellowship farm and that’s where for, Roland really liked. I didn’t tell you the Fellowship Farm
story but this, this. I have to tell you this. This is a clear example of what I meant by making decisions,
um, we took them to the Fellowship Farm. They was just dumbfounded. They, you talking about
freedom and going to see, uh, a sheep for the first time in their life and then when it came down to the
food and they saw that and they didn’t know how the, they didn’t know what to do actually. They kept
asking us can we go ahead and, and we kept saying go ahead. Oh, I’m going to get in trouble if I take this
apple. I said, no, you’re not. You’re with us. We are not going to sit there and tell, help yourself. They
didn’t know how to and then when I took them to the mall. When Mark and I got a few people that we
wanted to interview and take pictures of, um, when we did the, um, we had another grant, the DD
Council, an institution booklet, the green, the yellow booklet. And that was just 30 stories of institutions.
We did a couple of stories in the mall. Called a meeting, institution folks and we took them down at the
mall where they had all the, oh my God, the first thing they did and normally we would order food, you
know, but the first thing they did was order dessert, before the food. But how, but this is what we saw
when we took people out of their element. You know, so
21:06:39:23 – 21:08:32:15
Lisa: So Debbie, self-determination since 2003, um, it’s been renamed, self-directed services and people
can choose to have self-directed services now if they like and so given your years of experience with this
philosophy. What do you feel ultimately have been the outcomes for people with disabilities?
Debbie: Uh, well, I don’t think it’s, I think it’s changed in a way that we didn’t want it to change like it
did. They took away a lot of things that, um, you know, how they set this up really when it, when the,
um, ODP, um, took over. It wasn’t called ODP then but when we really wanted to get in there, it’s
limited to choices now, um, people, it’s not what I would hope it to be and I know it’s not what Roland
would of liked. Um, because a lot of people didn’t have the experience of it, it didn’t go statewide where
the others, the other counties, uh, a few counties got the experience of what it is. When we tried to
make it abroad it was really, um, very interesting. It was hard to even get it in, uh, broker services and
people’s waivers and, uh, when, um, when they, when they really wanted it and needed it. Um, and
what it benefited, some of us and it didn’t benefit everybody else.
21:08:33:16 – 21:09:37:06
Lisa: Do you see self-directed services as a way forward?
Debbie: I have no idea at this moment because we have new people in charge. Actually I have never
asked Kevin [Friel] or Gary {Alexander] that question so right now I couldn’t even tell you if we still have
it and the concept. I know people are still doing it but the way ODP is doing things now, I know that
people are struggling with it and now folks went with the agency of choice. I know some people are still
dealing with Acumen and how that’s working, um, but I don’t know how long this is going to be funded. I
don’t know what Gary’s planning on doing with it or Kevin at the moment.
21:09:38:00 – 21:12:00:08
Lisa: Are you still directing your services, Debbie?
Debbie: Well, I’m on the, the OBRA waiver so I’m sort of, this is strange and you got a smile on your face.
I’m, this is really, getting really strange, um, put it this way, um, when I ended up leaving the selfdetermination I had a big meeting with Kathy Sykes and Vicki. [Stillman Toomey] I did not want to be
tested again or I don’t remember being tested or I would be, um, on a waiting list. What they did was
because I know them very well and they know me they didn’t want to see me without anything, um, so
at first they gave me, um, I have support coordinated services but then, um, I found out on the
computer or, um, meeting Frank, I had to give Frank some services so me and Frank signed up for the
OBRA waiver so right now we’re under the OBRA waiver but I have two support coordinators. So right
now, um, Liberty which is my waiver and part of that had to do with the welfare cause I’m, as my
brother would say, I’m in the, uh, what he told me the, oh, the, um, nurses district or something. Um,
how that intertwined with that I have no idea but I just know, uh, when I had to help Frank get his
waiver back the renewal was and the support coordinator really, uh, if I didn’t know what I knew on how
to fix this for him he probably wouldn’t of had the services he has because his support coordinator
missed the boat. They just, you know, um, but I’m with Liberty and they changed the waiver, um, cause I
spent like three hours with her so it’s gotten more complicated.
CHAPTER SIX: National Work
21:13:36:03 – 21:15:19:25
Lisa: Okay. Debbie, I wanted to talk a little bit about your work nationally, um, because your work as an
advocate isn’t limited to Speaking For Ourselves at least not to Pennsylvania.
Debbie: No.
Lisa: Um, you got to watch the ADA signed into law in 1990. Why were you one of the people…
Debbie: I don’t know.
Lisa: chosen to watch this?
Debbie: I have no idea. Um, I was invited to Washington and, um, everybody wanted to meet, wanted
me to meet, um, oh, what’s that name? If she, If I forget her name it’s going to be, the governors, old
governor’s wife that used to be the, Oh, God
Lisa: Ginny Thornburgh
Debbie: Ginny, yes. Thank you. Ginny Thornburgh. Um, but, um, I don’t know. Like I said, um, it was, um,
it was, um, you know, Mark and I and Roland. It was Mark, me, Roland, Steve and I think, um, one other
of our members if I remember. Um, there was another member of ours. Uh, I don’t remember if Tom
was there or not. Um, but everybody was keen for me to meet Justin Dart and that’s how it’s all. I think I
met Justin Dart then, um, I didn’t know, uh, you know, I don’t know, I think Roland or Mark asked me if I
was interested in going to Washington. I don’t, we got an invitation to go.
21:15:20:13 – 21:18:44:17
Lisa: Can you tell me a little bit about watching the law signed and maybe also a little bit about Justin
Dart?
Debbie: Well, it was hotter than I can imagine. In July, you don’t want to be on DC, I don’t care, don’t
want to go to DC in July, Never. It was one of the hottest things I have ever, sitting in the sun just
waiting, I mean we were, I don’t know how, two or three hours. It was, it was horrible. It was hot. It was
really hot that day. I, you know, I was burning up like this was not, ha, ha, we couldn’t wait two to three
hours waiting in the sun for, um, it was the most incredible thing I have ever seen. I don’t know how to
describe something, you see a president and you see this man in a wheelchair with a cowboy hat, ha, ha
and then hearing his story how, how Justin did it all. Republican came Democrat and the media just
loved him to death. It’s a, I had never seen anybody, how you can describe Justin. Um, he, um, it was the
most incredible thing I have ever seen and honestly meet the man that went all over the country to
work on this, to do this and have your name to it. It was incredible and I don’t know how he even got up
around to meet us all but somehow somebody got him too, um, come around to meet us and with
Jenny, I guess it was Ginny Thornburgh, I guess Ginny was the first one I met and I didn’t even know she
was our Governer’s, Governor’s wife. And, um, you know, um, Mark, Mark and Roland knew them so,
you know, and I think, uh, somehow I think either Jenny got Justin up there or Mark did or Roland did or
somebody, where we were to where Justin got up around to meet us all in the hot sun. There was no
words that you could describe something you can’t say it. There is nothing I could say or I was frozen in
time or something cause you never met a icon or, uh, it was like meeting, uh, you know, the greatest
leader in time was, uh, a whole lot of, Martin Luther King, Gandhi, uh, Roland in his own right but he led
up there with the top people of all time. It, you talk about an icon, uh, in the disability movement. It was
just incredible.
21:18:45:02 – 21:20:00:11
Lisa: You and Justin became friends.
Debbie: Friends, my whole family met, not my whole family, my mother and me and Justin became very
close friends, um, not just me, my mother too. He just loved my mother to death.
Lisa: Justin, nominated you for a very special position a few years later
Debbie: Yes, he did and I turned it down three times.
Lisa: Can you tell me what the position was and why you finally said yes?
Debbie: It wasn’t a position, it was being on a committee, a board, um, and I had no idea about politics. I
really didn’t know. I honestly didn’t, I mean, everybody had experience or something. I had none, zip,
zero and these people kept calling at least two or three times. I turned it down three or four, I really
didn’t, the man kept calling Mark said and he’s trying to get me on this committee and I said no. He kept
calling, he kept calling. I had no idea until later, way later I got on there. Justin was the one that, nobody,
everybody kept it a secret from me.
21:20:00:20 – 21:20:41:05
Lisa: And what was the secret?
Debbie: Cause we had to fill out, Nancy, Mark and everybody had to fill out the applications, the form or
whatever and I got up and they called I tell you three or four times. They had to track me down and the
man didn’t give up. The man did not give up and I had and I told, I don’t have no, I don’t even know
what this is. Do you want to be on the national Council of disability? What is it? It’s a committee in
Washington and a little bit but I kept saying no. He tracked me down while I was in another state. The
man called me on my phone and I said this is crazy. He is not going to take no for answer.
21:20:41:27 – 21:22:11:10
Lisa: Do you remember your first meeting when you finally said yes?
Debbie: Oh God, I was, uh, I was in another state. Ha, ha. Yeah, I said yes but I didn’t know what I was
getting into and all my friends were like, and we had to fill out forms and then when the government
had to, um, and there were these other forms and they started coming to my, about my background,
school background, the whole nine yards. I had to have friends help me fill this out. My mother was
going nuts and nothing like having the government, FBI going to your house and going to your job
interviewing people and what really upset everybody and I don’t know they just coldhearted because
the man came to Roland’s funeral. After we left the funeral home and we came back for and soon as I
got off the FBI is sitting right there. Interviewed probably a 100 people and everybody that knew me
came up and yelling at me because they think I sent them. Ha, ha. Cause you’re not on the day that
Roland was buried, they interviewed everybody in that room. They came to my job. They came to
Roland’s funeral. I told them, I said, this is a funeral, I kid you not.
21:22:11:21- 21:23:11:27
Lisa: Which president did you serve, Debbie?
Debbie: Um, President Clinton.
Lisa: Did you meet President Clinton?
Debbie: Yes.
Lisa: What kind of issues did you work on as part of the national council?
Debbie: Actually, we didn’t know too much about the national council disabilities so we had to go
through, um, a learning curve because we didn’t know what the national council was. You know, we had
to know what we were getting into, the committee. We had to take our oath and all that, um, because
we didn’t know what, none of us knew what cause nobody heard of them, you know what I mean so.
21:23:11:17 – 21:27:37:05
Lisa: I know they had a big charge. They wanted to work on enforcement and implementation of the
ADA, family supports, healthcare, um, transportation, loads of things. Was there a particular type of
work that you were most proud of contributing to?
Debbie: Um, I think with maybe cause I didn’t have any experience at all, so I came from, everybody on
that committee had government experience or legislative. I come from the advocates, uh, the, um, keep
the people that they’re supposed to be, you know, making sure these, these services work. I come from
that spectrum so I think what I gave was the insight of regular folks like, I don’t know, you know, with
somebody that, um, and I was frustrated cause I couldn’t get it. Um, it was hard for me to grasp it in the
beginning, for me to grasp it because we had this big old book we and everything was going so fast. We
had to slow, I mean, I had to figure out a way to slow it down but how can I be more helpful but I
needed more assistance than I thought I needed so I had Mark and other people go with me at each
meeting to see, to help me through this stuff because it was very complicated in the beginning. You
have legal words, big book, as big as, I mean, gigantic and you only have a day to go through it, to break
it down. First we had a travel day then we get up at seven o’clock to go to different committees. I’d only
pick the committees that I think I would, I would like to be on but I had to learn about how the
government worked so it took me maybe a year or two to figure it out. I was frustrated to the point
where, um, I wanted to just not do it anymore. Um, it really got to me. Um, and, um, and I wanted to
quit in the middle of my years. Um, I even went to Justin at one time and that’s when it came out that,
uh, he’s the one that got me into it and he, I went to him or I called him cause he was my mentor too. I,
um, needed somebody, I didn’t know what to, uh, I was frustrated, um, and, you know, when I started
bringing people to it they understood my frustration, my friends Tom, no Nancy went a couple of times
and Mark went a couple of times and he understood and he started looking, saw how it was supposed
to go. He saw the frustration and how I could figure out how in the world you could do it, I don’t know.
And I went to Justin. He talked to me and told me what I needed to do, stick in there. He gave me what I
needed to stick it out and to ask for the help that I needed and to slow down the process. I was scared
cause everybody, you know, I was really scared, um, but when I started speaking up and asking them to
slow it down and to have a way that we can understand this stuff then what I was feeling was relief
because everybody was feeling the same way I was and I had no idea. I had no idea cause I was the
outcasts because I didn’t have no, no experience but Justin got me on there cause he saw that they
needed somebody like me even though I didn’t have experience they needed somebody like myself, an
advocate to see the other side of the track but they needed to understand my side of the track and, um,
so and then I, you know, slowed down the process some and then I asked for some help and some
guidance to help me go through this stuff.
CHAPTER SEVEN: CURRENT WORK AND ADVOCACY
21:27:37:26 – 21:28:39:21
Lisa: So Debbie, now you’re the Executive Director in Speaking For Ourselves.
Debbie: Yes.
Lisa: How’s the organization changed since you first joined over 20 years ago?
Debbie: Boy, it’s changed a lot. Um, cause we had to change with the times I guess. I’m trying to get us
back to where we were because that’s what Roland wanted. Um, my focus were, is to keep our mission
was 20 years ago and the purpose was Roland’s cause actually when, um, his sister passed me the torch
and gave me the go-ahead I didn’t know I was going to be a executive director but, um, his sister,
Laverne gave it to me so I’m obligated.
21:28:41:03 – 21:33:03:28
Lisa: Do you think that the self-advocates who are the members of your organization today are willing to
continue that fight?
Debbie: I sure hope so. Um, I believe so. We’re getting new people. Um, I think, um, we’re joining forces
with other groups now and we’re not like in, like Speaking For Ourselves was the driving force when
Mark’s, Roland era’s and Justin era’s, we were the leaders in a lot of, a lot of things now and now there
are other groups, are taking the lead, are taking the course of some of the stuff so knowing that and
saying Speaking For Ourselves is not important. Yes, we’ve been around almost 30 years, will be 30 years
next year’s. Lord willing, I didn’t even think we were going to last that long, um, but there are other
people picking up the torches now. Um, so we’re joining with them or, you know, we’re still, um,
important, you know, and, um, people respect us because they knew our name, um, and because of
Roland. I think a lot of people are following in Roland’s footstep. It’s not just speaking, we all took the
cause now. When Roland passed this on to me everybody else grabbed it now. People believe in it. If
you believe in something it’s going to be alive. It’s not just us. We have other people now that’s picking
up in different ways and different, you know, we’re out there. Uh, I mean, I just met Gary [Alexander]
for the first time last week, two weeks ago and, you know, seeing other people talking about the
institution. How you could fall six people with waivers. How can you do and I didn’t have to say it, I had
to say, you know, people’s lives are at, you know, we’re not even at the table when you pick up waivers.
What’s going on with our, you know, so what I meant by other people are taking the cause to, um,
bringing up our issues because they know that’s the right thing, they know, we all, everybody in
Pennsylvania and the national no what Roland, Mark, Justin Dart stood for, justice for all. That’s what
Justin had always said and if anything, he didn’t, um, even with one of his sayings were, you know, get
into politics like your life depended on it cause it does and justice for all was his last statement. Justice,
liberty and justice for all and that just, that’s not just Justice and the, your term that’s justice for this
whole system, for everybody and, you know, those two things, Roland, who’s in charge, Everyday Lives
and just liberty and justice for all from, um, Justin Dart, those two. That’s what we are all in this together
and I, that’s what I keep telling people. We are all in this together, we cannot do this alone. A lot of folks
moved on and did other things but the fight is still there and we have other people picking up the fight
now and it’s not, I don’t know, uh, I hope, you know, when I go, when it’s my turn not to be here that
somebody will take Speaking For Ourselves or, you know, and still continue after me or somebody need
to take this work cause I’m, you know, I never know.
21:33:04:01 – 21:33:59:22
Lisa: How would you like to be remembered, Debbie?
Debbie: Um, I guess, um, that I, um, I did what I could to keep Roland’s dream alive and what he stood
for and also Justin Dart and the principle and, um, you know, make sure that this is a, um, a free world
for everyone, out of institutions and choices are for everyone, not just self-determination choices
period.
21:34:00:10 – 21:34:59:29
Lisa: Has your life been different than what you imagined, Debbie?
Debbie: Yes.
Lisa: What did you imagine and how is it different?
Debbie: Um, I guess it’s different, um, because of where we are, um, that is some, we’re in a different
time, a different era, um, also that other people are picking up what Roland and Justin, um, stood for
and fought for and died for and, you know, that’s freedom and justice and equal rights for all.
21:35:00:17 – 21:36:51:02
Lisa: But in your life, could you have imagined the role you would have played in this history?
Debbie: No, absolutely not.
Lisa: Would you do it differently?
Debbie: Um, I guess yes, I would, I mean, I would try to keep, um, our, you know, um, our own members
back or, um, you know, um, kept up on the, uh, you know, kept the freedom community going, um, the
freedom marches. We will be getting back to those, um, you know, and kept up with the national stuff
that’s going on.
Lisa: But yet you’ve accomplished so much. Do you ever sit back and feel proud of what you’ve done?
Debbie: Yeah, yes. I just know there’s a long way to go. Um, I have a lot to do and I don’t know how
much time I have or nobody does, you know. I just hope and pray that, um, somebody will continue the
work. I know that it’s bigger than me and Speaking right now.