Visionary Voices Interview
Audrey ‘Dee’ Coccia
July 7, 2011
Chapter 1: Dee’s Childhood, Marriage, and Family Life
My name is Lisa Sonneborn
I’m conducting a video interview with Audrey Coccia at Temple University in Philadelphia,
Pennsylvania, on July 7 at 4:30 p.m.
Also present is our videographer Lindsey Martin.
And do I have your permission, Dee, to begin our interview?
Dee: Yes.
Lisa: Thank you. Welcome.
Dee: Thank you.
Lisa: Dee, I wanted to start by asking you some questions about your childhood, and of course
the most basic question of all, where were you born?
Dee: I was born here in Philadelphia, and spent the majority of my early childhood in North
Philadelphia.
05:34:03:21 – 05:35:20:20
Lisa: Can you share with me some of your earliest childhood memories?
Dee: My two sisters were much older than me.
One was 15, the other was 17 when I was born, so I was more or less like an only child as I grew
up.
My older sister got married very early, when I was about one, and a few years later had her own
daughter, so my childhood was spent mostly as an only child, with my mom and dad who were a
little older.
And over the years, we lived in one neighborhood, and then we moved up close to where my one
sister lived, so it was a nice experience for me insofar as it gave me brothers and sisters in a
sense, because my sisters had children, and we all lived in a small little section of neighborhood,
and around Fox Street in the northeast, in the lower northeast, near TastyCake.
So we all lived very close together, which, you know, that was nice.
When you’re an only child for so many years, it’s really nice to have other siblings, in a sense,
and other family members around.
So that’s how I spent my early childhood.
05:35:21:06 – 05:36:18:22
Lisa: Can you tell me a little bit about your mom?
Dee: My mom, I probably gained a lot of who I am from my mother.
My mother was someone who stood up for what she believed in, and was not afraid to speak out
about something, and she had to go back to work when she -- she didn’t work when I was
younger, but my father had a heart attack when I was -- probably be around 13, and my mother
had to go back to work then because my father couldn’t work for a number of years, and that was
the first time she had really ever worked.
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But she, you know, in all things, she was always there for me, and so was my dad, and as I grew
older, they were a great source of support for me in my life, and I really appreciated having them
all the years I did have them.
05:36:19:10 – 05:38:39:09
Lisa: You said that your mother was the type of person who would speak up when she needed to.
Does anything come to mind, an instance where she might have advocated on someone’s behalf,
or -Dee: I have to say this.
One of my first experiences -- and my one sister is very -- both my sisters are pretty laid back.
They really didn’t understand my mother or me, I don’t think, but a little boy was killed on our
street, and this is what I first remember.
Instead of ever taking part in something to make a change, and my nephews were on the street
with this little boy, and the little boy ran across the street with my nephews.
My nephews made it across, he didn’t, and he was a young boy with a disability.
And my sister was so devastated by the fact that this little boy had been killed that she started an
effort to close the street off so that you could not come through that street anymore, rushing
home from work, because there was a factory close by, and a lot of people would try to avoid the
lights, and come through that street, and they’d come through quickly, and that’s how this little
boy got killed.
And so it was the first time I ever participated in something where we got signs, and we closed off
the street, and we wouldn’t let any cars through, and got the street changed.
It became a one-way street in the opposite direction.
So I guess that was one of my first experiences even with a family member, seeing -- doing
something and actually getting a result from it, and all that time it didn’t make much of an impact
on me, it probably did remain somewhere inside me, that, you know, you can make a difference if
you speak out and try to do something.
You can actually make a change.
So my mother -- my mother was always speaking up for me, speaking up for my sisters, speaking
up for my -- well, her grandchildren, my nieces and nephews.
And you know, she would certainly speak out if she felt something was going on in the
neighborhood that wasn’t appropriate, and sometimes that wasn’t always well appreciated.
But she would speak out, and again, she would make a difference.
So.
05:38:41:08 – 05:39:40:04
Lisa: Can you tell me a little bit about your father?
Dee: My father was kind of a quiet man, and he was a blue collar worker, all of his life, and he
only went to third grade, and he taught himself how to read, and to spell, and to do math, and he
became quite good at all of it.
But he was self-taught, and even as an adult, he worked menial jobs, not making a lot of money,
but always supporting us as a family until he got sick and had a heart attack.
But he was a quiet man.
My mother was more or less the driving force in our household.
I’m sure she wouldn’t appreciate me saying that, but she was, she was.
She was a driving force for all of us.
And my father didn’t seem to mind, he was okay about it.
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05:39:40:16 – 05:40:51:10
Lisa: So do you remember as a child or even as a young woman what your hopes and dreams
might have been for your own future, your own adulthood?
Dee: You know, I guess -- you know, in the town I was born, which certainly wasn’t when people
were pioneers, but even in the days when we were born, blue collar workers, many of their kids
didn’t get to go to college.
I mean, I was a pretty good student.
I was considered to be gifted, but my parents never talked about my going to college or anything
like that.
They couldn’t afford it.
And I got a job by the time I was 15, working in a factory, in summers, and kept a little job up all
the way through the rest of my high school education.
And in the meantime, when I was about 15, I met my husband, who was about two years older
than me.
So he was about 17 and I was 15, and you know, we became very engrossed with each other,
and he went off to the army.
He volunteered to go into the army.
At that time there was still a draft, and a couple years later we got married and I went to live with
him out in Kansas, where he was stationed.
05:40:51:23 – 05:41:44:13
Lisa: How did you first meet Mr. Coccia?
Dee: I come from a neighborhood very similar to the old neighborhoods you would think, like in
South Philadelphia, or inner city places where kids would hang on a corner.
There would be a steak shop, and I lived in -- I’m Catholic, so a lot of times we divide up where
you live by what parish you live in.
And so I lived in one parish where mostly Irish people lived, and my husband lived in the next
parish down where mostly Italian people lived.
But us young ladies used to go down to a dance -- there was a dance one night a week on
Wednesday nights, and I would go down there to the dance, and we would often go to the steak
shop in that Italian neighborhood.
That’s where you got the best steaks.
And that’s how we met.
05:41:45:15 – 05:42:29:27
Lisa: Do you remember when you saw him for the first time?
Dee: He was, again, a really quiet guy.
I was actually going with another fella at the time, and I just kind of liked his quiet demeanor,
compared to some of the other guys that hung on the corner.
So if you ever saw The Bronx Tale, you can get a sense of the kind of neighborhoods that we
lived in, they were pretty cool, but they were also, you know, a part of the time that we lived in.
All those kids had cars, you know, kind of -- and some of them were a little wild, and some of
them were not, but that’s how I first met my husband. I was going with another fella from down
there.
05:43:27:19 – 05:45:08:22
Lisa: Okay, so Dee, I wanted to ask you a little bit about your own family.
You can tell me maybe about your children.
Dee: Well, I can start by saying that my husband and I got married when I was about 19 and he
was 21, and we left almost immediately to live in Leavenworth, Kansas, where he was in the army,
and he was a military policeman, and we had our first child out there in Kansas, which is my
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daughter Denise, and we lived out there for about a year, and he only had to do two years, when
you were drafted, especially because he was voluntary.
And we came back to Philadelphia, and we lived in a little apartment under my mother for a
number of years, and that’s where I had my second child.
I had a hard time having a second child.
No problem having the first one, in the first year, but my second child I had a really hard time
getting pregnant, and we continued to live in that apartment for awhile.
But when Gina was born, she was born with a lot of birth defects and a lot of serious health
problems, and so it was really just the four of us, although my mom and dad lived upstairs, and
my sisters still lived around the corner from us, because we all lived in that little cul-de-sac.
And you know, it was nice for my first daughter growing up there with, again, nieces and nephews
and aunts and uncles all around the corner from you.
And once Gina was born, our whole life situation changed because she was so ill.
Chapter Two: Gina (daughter)
05:45:09:19 – 05:47:17:14
Lisa: Dee, I wonder if you can tell me a little bit about your first memory of Gina.
Dee: Gina, my first memory of Gina herself, was sitting in an incubator in a hospital for a month,
with leads around her heart, because she had serious heart problems, too, and she was very
cyanotic.
And I would go every night and see her, but you weren’t allowed to go touch her, so I had never
touched her, from the minute she was born.
In those days they just take the baby, and especially when they were ill like that, they’d just move
them into an ICU unit, and so I would go, but I could never touch her.
And I would just stand there and, you know, look at her for awhile and, you know, maybe stay
about an hour, and then leave, and come back again the next night.
I wanted so much to have a second baby, so I was so thrilled to have her.
But she really did, she had club feet, she was cyanotic all the time, and her birthweight was
extremely low, even though she was almost a full term baby.
So she was totally different than my other daughter, who was eight pounds, seven ounces at birth,
and Gina was four pounds and failing to thrive almost from day one.
They couldn’t get her to suck on anything, they couldn’t get her to respond very much.
She had jaundice.
It was a new experience for me.
All my nieces and nephews, that was the only comparison that I had was my own nieces and
nephews.
All of them had been born fine and healthy and well, and so having a little baby that was so
seriously ill, and my older daughter, she was about four and a half, and we talked all the time
about how wonderful it was going to be when she had a brother or a sister, and from the minute
Gina was born, she was hospitalized and we were leaving Denise all the time to go see her, and
it was hard for her, too.
05:47:19:05 – 05:50:46:02
Lisa: How did your family members, your husband, Denise, your extended family who lived so
close to you, were so much a part of your life, how did they react to Gina having a disability?
Dee: My sisters -- Gina was just accepted for who she was.
I think my in-laws had a harder time accepting that we had a child with a disability.
They kept saying to me, nobody was ever born like this in our family, things like that.
I know they didn’t mean any harm, but you know, that wounds you every time somebody says
something like that to you.
My mom and dad lived above us.
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They were, again, great support for us.
Vincent would, for us to have a decent life, he worked two jobs, so he was away a lot, so it was
just basically Gina and Denise and myself, and when my parents were able -- they both worked,
but when they were able to take a little bit of the pressure off of me, they would come and take at
least Denise and do something with her.
But I mean, my family were -- she just -- for the most part, in the beginning, I think we just wanted
to believe she was just going to still be a little baby, that’s all that mattered.
But she was two years old and she still only weighed eight pounds.
And my sister used to make -- had a doll -- she worked for designers.
She was a seamstress, so she would take doll patterns, dress patterns, and make Gina dresses
because Gina’s dresses were about this big, because she only weighed eight pounds.
But we tried to make her, you know, as she grew a little more, and more and more, we wanted to
have nice little dresses and stuff.
So my sister would make all her clothes.
And Gina was sick a lot.
She would take hours and hours to feed.
She couldn’t suck, so you were supposed to feed her every two hours and try to make her gain
weight, and as soon as you got the two hours worth, it would take you two hours for her to get it
down, and as soon as you did she’d upchuck it, and then you had to start again.
And she was very opposed to eating, you know, and sucking, and you could tell she was
exhausted from just trying to suck the food in.
Her heart was pretty bad in the beginning, and certainly that, I’m sure, contributed to her not
doing well.
But it was hard on my other daughter, because we had to worry about Gina getting infections
because of this serious heart condition, so it was always, you know, don’t touch her if your hands
are dirty, and leave her over here, and she was very fragile.
Her soft spot didn’t close until she was about two, so I mean like, she couldn’t sit up until she was
about two and a half.
She was just flaccid, she just would roll -- just fall over, and she couldn’t sit, she couldn’t hold her
head up.
So it wasn’t the baby I’m sure that we all dreamed about and wanted, but you know, she just
needed love and care and support.
And it’s hard -- I didn’t feel like I minded it, because I wanted her so bad, and I’m sure everybody
else wanted her, but you know, life goes on, everybody goes back to doing their own stuff, and
the first few years were very difficult, because she was pretty sick.
05:50:47:00 – 06:02:25:08
Lisa: Dee, I wonder what the doctors advised you to do.
You had a child with such significant needs.
Dee: Well interestingly enough, when Gina was transferred -- she was in Pennsylvania Hospital
for over a month, and she was not doing well, and they wanted to transfer her to St. Chris’.
We didn’t have any money.
Vince was a fireman, and you only got 30 days for your whole family, and between Gina and I we
had used up that 30 days even before the end of that month.
And so when she was transferred, they transferred her in an ambulance and I went with her, and
they were waiting for me when I got to the door at St. Chris’, wanting to know how I was going to
pay her way.
It ended up they were able to help me to get help through The Heart Fund, because she needed
a cardiac catheterization.
They knew she was a mighty sick kid, and there I met my doctor, who became a lifesaver for us
over our lifetime.
He’s still Gina’s doctor which -- she’s a pediatrician, but Gina still goes to him, and believe me,
some days I think he’s the only doctor who will tolerate her, because she doesn’t like doctors very
much.
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So we met him.
He was the resident at the time, and I liked him a lot, and he was -- he actually baptized her for
me because they weren’t sure she’d live, and I said to my husband, if he goes anywhere, I’m
going to follow him when he leaves here.
In the meantime we had a little Italian doctor who took care of her, who was a pediatrician, who
actually taught Dr. Barberra, his name is, and Stu Barberra, who still is in practice today, and as I
said, Gina still goes to him, he has a sister with Downs Syndrome.
So I think he had -- you know, had an understanding of what was going on from a parent’s
perspective, than many other doctors might have had, but we just fell in love with him, and
obviously we’re still with him.
And Gina loves him too, although she gives him a hard time.
So that’s -- and Stu -- I worried about her, because she just couldn’t gain weight.
I mean, one time we had to take her out to the hospital, and when we got to St. Chris’ this time,
we had to take her because she had a grand mal seizure.
I had never seen anybody have a grand mal seizure.
She had a grand mal seizure, and Vince and I jumped in the car, and luckily my mother was there
that day, and Jean Denise was so afraid because of what she saw, she was dragging along the
side of the car as we’re trying to get away and get to the doctor’s office.
Well we ended up she had to be placed in the hospital, and when I (inaudible) with some of those
other doctors, they were not quite as understanding, and they kept saying to me, has your doctor
really told you what’s wrong with her?
You realize she has a big head and a small body, and you know, I called Dr. Barberra and I said,
you know, are you not being -- what’s going on?
Because if you’re a mom, you know when a child is not progressing, and I would say to him all
the time when I would go, how come she’s not sitting up?
How come she’s so flaccid?
How come you can’t console her when she cries?
How come she barely sleeps?
How come she can’t suck?
And he’d always say, Dee, you know, she has a heart condition.
These kids, it’s hard for them to get started, and their progress is slow and their development is
slow.
And even though he kept telling me that in my heart, I knew it wasn’t that.
So when these doctors finally confronted me with this, you know, I went and I talked with him
again, but he always was kind of like putting me off, you know.
He never quite was upfront with me, and I think I think he was trying to spare me -- but you’re not
sparing a mom when you have a kid with a disability, because you know it in your heart.
You just need some confirmation that where you’re at and what you need to do.
So when Gina didn’t make any progress, and she was like two and three, I started to seek out
other places.
There was nowhere for us to go, they didn’t have programs at that time for early childhood
programs or anything like that, so I read about this thing that they did called patterning, where you
take a person and you used crawling as a basic way to help them learn.
In the meantime, we were trying to help Gina learn.
We tried to sit her up and she would fall over, and we’d sit her up and she’d fall over, and so we’d
try to help her learn to sit up by helping her learn, put one hand here, put one hand here, pull until
you get up, and she did a little bit of it, but not much.
And we taught her -- because she couldn’t get up on her knees and crawl, she didn’t seem to
have the capacity to do that, we told her to roll so she could move around.
And she learned to be a terrific roller.
She really did, she could get into two and three and four rooms, right behind you.
I mean, you would almost not realize she was under your feet, you know, and I still felt we
needed something more, and I kept pesting the doctor about it.
So finally my husband’s family raised $1,000 for us to go to this (Dillman Delecato ?) Institute,
which was up on Stanton Avenue, where they did this patterning, and we took her there.
It was very intense.
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We had to go there for five days, for eight hours a day, and she had to go with us, and they
supposedly did an assessment.
Of course they said she was brain injured, and that, you know, you need to retrain the brain, and
the way you do that is through crawling.
And so they gave us all these instructions and things to do and equipment to build, and we built
all of it.
We had no dining room set.
We put everything in the dining room and we -- and I went out because you had to do it five times
a day, and I was very -- I didn’t have a chance to meet neighbors.
Not that I was -- I’m kind of a quiet person anyway, although everybody would tell you that’s not
true.
And so I didn’t really know my neighbors well, but I needed people to help me.
I needed three people to do this five times a day.
So I went and knocked on doors, and neighbors responded, and they said they would come.
I told them it would only take them five minutes if they would come and just help me, and if they
just did it once a week, and I made a whole schedule and got all these neighbors to help me.
And my family members -- my aunt used to come once a week.
My mother would come.
By then I had moved out of my mother’s apartment and we bought a house in Longdale, and it
was -- it was very intense, and a lot of people discouraged me from doing it.
My doctor discouraged me from doing it.
In the meantime, I had noticed when she was moving around, she often would like stop and blink
and blink and blink, and I said, I think she’s having some kind of seizures or something, and no,
no, I don’t think so.
But eventually, she had another grand mal seizure, and when they did testing, they found out she
was probably having a petit mal seizure about every ten seconds.
But we started the treatment, and I -- how to put this -- because she rolled, they were very
fascinated when I took her there and they saw how she could roll all over.
She was a skinny little thing, because she still continued not to thrive well; she would never touch
food.
They said she can’t do that anymore.
You’ll never get her to crawl as long as she can get around rolling, and I thought, after all this time
we spent teaching her how to roll, she can’t roll anymore.
And they said, we want you to build this T-bar and put it on her back, and keep her from rolling,
but put a lot of toys out in front of her.
Just to go back a minute, Gina also had serious club feet and it took a very long time, about nine
months, of casting and then off -- you get shoes on a bar.
I don’t know if they do that anymore, and they’re heavy as heck, for somebody with eight pounds.
Her shoes were about this big, but -- and you had this big metal bar, and she had to stay in them
24 hours a day.
I mean, all of that didn’t help her development, you know, but her feet finally -- I mean, she had
no heel or anything.
They were able to build a beautiful foot for her on both feet, but all of that I think helped delay her,
you know, and telling me all the time to keep her away from people so she didn’t get sick because
of her heart, and she would sit for hours and just look at her hands, and none of those things I
thought helped her development, and I felt that way strongly, that she really needed stimulation.
And this program did give you that kind of stuff.
It was kind of -- it was a lot of physical and occupational therapy that I’m sure I could have got
from a physical and occupational therapist, but she had to learn to crawl, and so we put this bar
on her back, and I felt so bad, you know, for her, because she was a tiny little thing, and she had
this big bar on her back, and he’d try to roll, and she couldn’t go anywhere.
And my mother goes out with me one day, because I would go out at least once a week.
My aunt would come and stay with her so I could just escape, because people would be coming
to my house four and five times a day, and as I said Vince continued working two jobs, so a lot of
it was, you know, basically me doing it.
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My mother goes with me and I leave her in the mall, and I come back in awhile and she’s got all
these ladies she’s talking to, and she said this is my daughter with the retarded child.
At that time, that was not considered a dirty word, but -- and she said, and she puts a cross on
her back.
And I was like, oh my god, these people are going to think that I’m abusing this kid.
But you know what, in about five or six weeks, one day, just like that, she got up on her knees,
and it’s like she didn’t even know she had them, you know, and you know, she did learn to hop.
She never learned to crawl.
Even though we taught her, we had this big table, and you would lay with her extended -- with her
head extended up, off the table, and you would actually teach her to crawl, and you would have to
do the opposite arm and leg.
It was very tedious, and she didn’t seem to mind it.
She never fought us or anything, but I think it helped her muscles.
I think it helped her stimulate her, and just like that one day, you know, she did start to hop
around the house.
She would hop, and then she became a great hopper, just like she was a great roller, and they
always felt that you needed to crawl, but she never did attain that.
And then just like that, one day she got up on her legs.
By then she was probably around two and a half, three, and when she got up you couldn’t stop
her.
She was very hyperactive.
She was -- she was a handful, but you still wanted her up and walking.
06:02:25:21 – 06:03:46:09
Lisa: How did you communicate with Gina? Could she communicate with you easily?
Dee: Actually, it was really hard to tell if you were making contact with her.
She most often didn’t give you eye contact.
She didn’t smile very often.
She seemed very within herself, and part of this program was also that you would play tapes.
So I would put these tapes on and leave her and listen to these tapes over and over again, and it
would be words, and also everywhere in the house we would put like we would put a sign, table,
light, chair, and she did start to say a word or two during that time, but part of this program also
required you to take them in a dark room and shoot a flashlight in their eyes, off and on, and then
Gina started to have terrible seizures.
And besides that, after two years, I was pretty exhausted.
So we kind of gave it up, you know, and went on from there, trying to seek other ways of helping
her.
Chapter Three: Impact of Gina’s Disability on Family
06:03:46:20 – 06:05:05:11
Lisa: I can’t even imagine how exhausting it was for the family.
Maybe you could talk to us a little bit about the impact it had on you and your husband, and on
Denise.
Dee: I think it was -- I think part of the reason my husband worked a lot was it was easier to deal
that way.
It was hard for him to come from one job to another, find people in our house, and even though
you would tell people it would be for five minutes, once they got there, it was a half hour, an hour.
Every time Denise would want to talk to me, it was like, in a minute, after I talk to the neighbors
and we finish this and we finish that.
I thought it had -- although obviously we were married 52 years almost, we’re still together, I do
think it had an incredible impact on our family life.
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After awhile, I think even though nobody wants to say it, because I think they were afraid if they
said it to me I wouldn’t take it well, I’m sure that for a lot of them it was like almost too much, even
for my other little girl.
06:05:08:08 - 06:09:37:14
Lisa: Dee, you were also talking about some physicians that you met along the way, who were
more upfront about the fact perhaps that Gina had a disability.
Was there ever a time when people -- whether they were doctors or family members of people in
the community, who would encourage you not to care for Gina in your home?
Dee: I think over the years, I’m sure -- this made me a different person.
I mean, I really was a very quiet human being.
Over the years I became a zealot, and I think a lot of people wouldn’t want to say those kind of
things to me, even if they felt them.
My doctor personally never suggested it.
I mean, he did worry sometimes about my other daughter, because he felt that it did impact on
her.
My family members for the most part, other than my mom and dad, they all lived in different
neighborhoods.
We scattered over the years, and even though we were still all in Philly, they had their own lives.
And sometimes they didn’t appreciate Gina.
Gina could -- after she got up and became her own self, she could push people a lot.
She would crawl up on tables and chairs and pull things off of tables, and a lot of people don’t
appreciate that kind of stuff.
My husband’s family were, you know, they were very -- they’re cultured people to keep things
very nice and very -- everything in order.
And Gina wasn’t a person who necessarily abided by that.
So I think it was hard for all of them, but I think -- I mean, once in awhile my mother in law would
say something to me like, I don’t know, we never had anybody like -- again, she would say it to
me, we never had anybody like her in our family.
And I don’t think they fully -- my father in law didn’t understand her.
My father in law was from the old world, he was from Italy.
A couple times he did some things that I didn’t like at all, and you know, it caused some problems
with -- not problems with my husband and myself, because he certainly was on the same page
with me, but you know, it was his dad.
But he did little things that I thought were mean to her, and you know, you deal with a whole lot of
dynamics in families when you have a kid with a disability.
Sometimes my nieces and nephews, as they got older and they had children, and they had little
children, and Gina would come in and push one of the kids and knock them down and they were
like two.
They didn’t like it, you know, and I think they would have appreciated it if I didn’t come anymore to
like my sister’s house and things like that.
But somehow we managed, and I wasn’t going anywhere, and neither was she.
So people -- everybody loves her now, and she is a really incredible human being, and they love
her for that, not for me, but it was a road for all of them to learn how to live and appreciate a
person with a disability who’s different.
Gina has never been able to speak.
She could communicate plenty, but she’s never been able to speak.
But today, my nieces and nephews love her.
Their kids love her, their kids’ kids love her, and my in-laws love her, and you know, I think that
they’ve come a long way along with us.
It was an evolution for all of them, and for all of us, and the interesting thing is, since then, in later
years, two of my nieces in my husband’s family had kids with disabilities.
9
So it’s interesting, and some of his other family members had children with Downs Syndrome and
things like that, so if anything, she led the road for the rest of them to come behind, and for
people to not even think.
One of Vince’s cousins’ children had a little baby with Downs Syndrome with significant other
disabilities, born several years ago, and you never hear her mention that they would even
consider anything but that child living in community.
So in a way, Gina’s been a great teacher for all of them, she really has.
06:09:38:11 – 06:15:33:09
Lisa: Dee, what’s the relationship like with your two daughters?
Dee: My oldest daughter is in the medical field, and she loves her sister, but you still see the
sibling rivalry sometime, because I’ll say how wonderful Gina is, and she’ll say, I’m wonderful,
things like that.
And I say to her, get a life, you’re 50, which she wouldn’t appreciate me saying on TV or anything
like that, but -- and her kids are incredible.
One of my grandsons works with me now in the field.
The other two work at Vision, where I am all the time, and I don’t think they would have it any
other way than to see Gina in their life.
And actually, when my first grandson was born, the one who works for me, he was about two
years old, and he was in the car with us.
Of course, to me, having the grandkids and them being healthy and well was like such a gift from
god for me, and I used to take him everywhere with me, with Gina, and he said to me one day, in
the car, he said, Grandma Mew can talk, right?
And I said yeah.
And he said, and Grandpa talks too, right?
And I said yeah, we were both in the car.
And he said, well how come Gina doesn’t talk?
And I said she doesn’t talk because that’s the way she came from god.
She communicates with you, but she doesn’t talk the way you or I do.
And then he left it that way, and then about six months later, I took him for a walk, and he started
asking me again -- it was the three of us, Gina and Eddy and me, and he said, Gina doesn’t talk,
right, Grandmom?
And I said no, and he said, and is she always going to be that little?
And I said yes.
And is she always going to be the way she is?
And I said yes, and he said, Grandmom, I want you to know that I will always take care of her for
you.
And he was three years old.
So -- and then one other time after that, my daughter and I were in a car, and I was talking to her,
and I said, if anything ever happens to me, I want you to take her to where Dr. Barberra’s sister is,
even though I don’t particularly care for ICFs.
I wanted to make sure that she’d be somewhere where I felt she would be safe, and my daughter
said to me, no, she’ll come and live with me.
And I said, no she won’t come and live with you, she’ll live somewhere else.
You can look in on her, but she’ll live on her own, and she’ll live somewhere where she’s safe,
you just talk to Dr. Barberra about it.
And she said -- and she started to cry.
And she said, no, she’ll live with me.
And I said no she won’t.
And she said, she has to live with me, or she’ll never forgive me, which was like an amazing thing.
And in the back seat was Eddie.
Again, he must have been about four, and she said, and she’s my sister, and he said, yeah, and
she’s my sister, too, which I thought was so cool.
10
But you can see the dynamics in a family, the struggles that you have, in dealing with the present
and the future, and what happens to people, and how people struggle with their own feelings and
their own emotions and their own fears about what happens.
So -- but I think Gina’s been great for everybody.
She’s certainly been an enormous, enormous teacher for me.
I probably would have lived a very normal life, and been crying about the dishwasher not working,
or the air conditioner, or the last time I got on a vacation, where today, none of those things really
mean very much, and actually from the day Gina was born, they didn’t really mean much
anymore.
Because you really do begin to appreciate what is important in life, and I think that’s been great.
And I can tell you, a lot of the people who worked with Gina, who came into our house, a lot of
times when neighbors would come, they’d bring their children with them, and before you know it,
they were in high school, they would say I’ll come and help.
And a lot of them went into helping professions, as a result I think of having worked with Gina.
So I think it was really, you know, nice that we did all the things we did, and it really did, you know,
I do think we all come here with a mission.
That’s just kind of my own opinion, and this is going to sound strange, but I always felt, since I
was a little girl, I was going to have a child with a disability.
And I cannot tell you why, other than that little boy who died in our neighborhood, who lived a
couple doors from us, and I always had such an empathy for him and his mom, and then a couple
years later, my sister who lived down the bottom of our street, a woman next door to her had
twins, and the one boy was born with profound mental retardation, and she left him on that porch,
day and night, summer and winter, heat and cold, and it just broke my heart.
And I was about 11 years old.
And then I read the book by Roy Rogers’ wife, Dale Evans.
She wrote a book about a child that they had with a disability.
And I think it was called Angel Unaware, and I just always knew that I would have a child with a
disability.
And I don’t know if it’s because all those other things made me even more aware of how I felt
about it, but I remember one time when I was married, and one of our friends had a child with a
disability, and she placed them in an institution, and one of my girlfriends called and said, that’s
exactly what I would do if I had a child.
And this was before I had Gina, and I felt myself take a breath, and not respond, because I knew
that was something I would never do.
06:15:40:08 – 06:22:13:16
Lisa: I’m thinking right now about the Bill Baldini reports, Suffer the Little Children, which was
done in -- excuse me -- 1968, that really showed the community what conditions were like in
those situations for people with disabilities.
And I’m wondering if you saw that report, if you did, how you reacted to that, and perhaps how
that report differed from some other media representations of people with disabilities that you
might remember.
Dee: Just to put it in another context, I was a young mom by then.
When we had Gina she was unable to go to school, and the only way that you could get services
in this city, we were told, is if you went and registered the number to go to Pennhurst.
And the only even remote understanding I had of Pennhurst was that little boy who lived nextdoor to my sister who went away one day and never came back, and after great reluctance,
because I knew I might only get services for her if I did do that, I did go and have all the required
assessments done and everything, and of course at the end they told us we should place her in
Pennhurst, and I said that that wasn’t going to happen.
And they said, well maybe you’ll change your mind.
We’ll put you on the waiting list.
And I said, you can put me on anything you want, but she’s not going to Pennhurst.
11
And it’s not like I knew this place, it’s just something that was in my head, that this is not some
place she was going to go.
But over the years, when I finally was able to get Gina in some type of programs, which were not
school, because she was ineligible to go to school, because she was considered to be profoundly
retarded and ineligible for those programs, I became a zealot, and so I became quite interested in
everything around our field, and when the Pennhurst suit broke, I actually knew -- realized that
people would get services, and I went to see some of the attorneys, because I said, you got a
whole lot of people on the list, you know, can you make sure that if you break this down, and
people come out, that we also help the people who are waiting.
And eventually I think what happened was the attorneys worked out an agreement where they
dropped everybody on the waiting list out of the suit, but I was so fascinated that I went every day
and sat in the federal courthouse and listened, and I fell in love with all the attorneys -- David
Furlicher and Tom Gilpole and just their fervor, the fire in them about what was happening.
I adored Judge Broderick, I fell in love with him, and just listening to all the stories, and the terrible
things that happened to people, if nothing else it made me more resolved that that was nothing
that was ever going to happen to anybody that I knew, and especially not Gina.
And but because of that, I started getting very involved with things within the ARC, and also there
was -- this whole thing broke with Bill Baldini, and it was horrendous to watch on TV.
Now I was watching this as well as sitting in the courts, so one of the first nights when it was on,
I’m sitting in the living room with my other daughter and Gina, and Larry King gets on and says,
you may want to take your kids out of the room right now, because you won’t want them to see
this segment, it’s so horrendous.
And just previous to that, we’re all sitting there watching the same TV show, the same news show,
and one of the (inaudible) fell to his death, and they didn’t think that that was horrible for a kid to
see, but they thought looking at children with disabilities living the way they were wasn’t
something he didn’t want any child to ever witness.
So after that, I had written a couple of articles, and went into the newspapers, and because I was
involved with some of the attorneys by then, I was asked to go on a show with Larry King, and at
that time, I think it was -- I can’t remember the name of the guy who ran Pennhurst, but he was on
the show with me, and it was called Behind Locked Doors, I think, the show.
But I couldn’t help myself, again because I had become such a zealot, that when he came over -Larry King came over and introduced himself before we started the show, and I said, you know, I
think I really need to say something to you before we go on TV, and he said, oh sure.
I’m sure he thought I was going to compliment him.
And I said, you know, a couple weeks ago, you had the show on, Bill Baldini’s show in, I said, and
you -- that same night, I said you showed the Valendas, one of them fall to their death at least a
half dozen times during that day and evening, and yet you thought it was too appalling for people
to let their children watch people with disabilities be treated in such an inhumane way.
I said, you know, I really take offense at that.
Well of course, needless to say, he wasn’t happy with me, and he didn’t seem to get the message,
but I just couldn’t miss the opportunity to say to him what I thought he needed to know, and so he
would think about it the next time he did that.
So that was kind of that story.
I’ve done a lot of things.
06:22:14:00 – 06:24:50:12
Lisa:
I wanted to ask you where Gina’s living now.
Dee: Gina still lives at home with her mom and dad.
She rules the house, I think.
Some days she’s the queen, but she’s great, and we live around the corner from my other
daughter, and my grandsons, and they’re a great support to us in times when we need it.
My husband’s been sick a couple times with cancer, and very sick with cancer, and it’s been nice
living around the corner so that they could support Gina when I needed to support him.
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And she has a pretty full life.
She -- she started a workshop, but she was never happy in a workshop, because she’s just got
too much energy and life in her, and we were able to get her into a program where she’s able to
get out in a community.
She does some pretty great stuff.
She volunteers at a retreat house for nuns where she has certainly changed their opinion of
people with disabilities, and she also works at a home for nuns where they are retired, and I think
she’s beginning to make a real impact on them.
And she also delivers food to the elderly.
She helps prepare it and helps deliver it, and she’s in the choir.
That was kind of a recent thing.
She had been in the choir when one of her staff were running the choir, and I didn’t mind, and I
wasn’t quite sure why she was in the choir, but she liked going to -- I guess she liked the music.
But when that staff person left, she kind of fell out of grace with the choir, and then recently they
were all in town, and Gina saw them and she got right up and went into the choir with the rest of
them, and I could tell the staff didn’t appreciate it, but Gina got right in the middle of them.
And at first I thought, well you know, I guess they don’t want her there because she can’t really
sing -- she can’t speak, she can’t sing, and then I noticed there was a young woman there with
very severe physical disabilities, and all she was doing was rocking to the music.
And I thought, you know what, Gina should be in a choir.
So Gina’s back in the choir, and she just was at the Riversharks yesterday, and they performed at
the Riversharks.
So she has a really full life, she really does.
She does a lot more than her mom and dad do.
So she does, she really -- I think she enjoys her life a lot.
06:24:50:00 – 06:28:32:29
Lisa: Well, speaking of her mom and dad, what are some of the best times that you share with
Gina?
Dee: You know, recently she’s been -- she goes on vacations with us, and the older she gets, the
cooler she gets about doing it, and there’s two possessions that Gina has, that no one can touch.
One of them is her pocketbook, and one of them is her shoes.
She takes them everywhere with her in the house, and if she’s in the living room, they sit beside
her.
If she goes to bed, they sit beside her.
And I don’t know if she’s planning on going somewhere or what, but she always has to have them
with her.
So they were two of the things I was really worried about, the last few times we went on a plane,
especially after 9/11, because if you tried to take those things, that’s when Gina becomes very
adamant about you can’t have them.
And so you know, we’ve gotten to this point now where we have to spend a lot of time with her,
saying to her, now you know, everybody’s got to take their shoes off, everybody has to put their
pocketbook on that thing, and if they want to look through it, you have to let them look through it.
And we work on it a lot, and she’s become quite an avid traveler.
You know, she carries her own little bag, she gets her shoes and pocketbook off before I do, and
puts them on the thing.
They let them go through, and she’s -- there’s some great times.
She goes, well my niece lives in Florida, my one niece now, and we go there frequently, and she
likes to do that with us.
And just the time she spends with us, when we have affairs, parties.
She made a great impact on the legislator in our area, who now works at Temple, but he was a
legislator for 20 years, and I think Gina and I were his really first experience dealing with
someone who was not going to go away, about issues with people with disabilities.
13
He had worked a lot with people at (Wethaven ?), and the families there who wanted to keep their
kids there, and so when I moved into the neighborhood, which is my daughter’s neighborhood,
and they are friends of my daughters, I went around and knocked on his door, and I took Gina
with me, and I said, we live here now and I vote for you, and these are my issues.
And at first he was a little, you know, your issues aren’t any different than the people over at
Woodhaven’s, and I said, yes they are, and he said, well Woodhaven’s a nice place.
I said, then you ought to go and live there a little bit and see how nice it is to live there.
Not that it’s a bad place, but it isn’t community, not real community, and after two or three times
going, I said I think if you don’t hear my issues, that Gina and I are going to have to stand out
some of the polling places with signs, to let people know how you feel about people with
disabilities living in community.
And we became great friends after that time.
And now he’s not any more -- he again left the profession as a legislator and he’s working down
here at Temple, and I love him, and Gina loves him, and I think he loves us, and I think he
appreciates the issues that -- and I’m sure it has made a difference for him.
But I think there’s some of the things that initially as a young parent, I didn’t spend a lot of time
looking at legislators and things like that, I was too busy just trying to fight for services, you know,
and didn’t realize how much of an impact they have on services, too.
And so I got a lot older, but I think it’s important for people with disabilities to be out there and be
seen and heard and people getting an opportunity to appreciate who they are.
06:28:36:00 – 06:29:20:07
Lisa: What does Gina mean to you?
Dee: She’s been a big part of who I am, and as I said earlier, I think she has been the greatest
teacher that I could have ever had in my lifetime.
I’ve had a wonderful family, wonderful relatives and mentors in my life, but nobody has mentored
me more than Gina, to appreciate life and to realize the importance of things in life.
06:29:23:16 – 06:29:33:23
Lisa: What is maybe the hardest thing, do you think, about having a child with a disability?
Maybe one of the hardest things in life is certainly to me, worrying about not being here anymore
for them.
I worry what would happen to Gina if I wasn’t here, because it is a lot of time and effort, and
forbearance that it takes to stay -- fighting the wars that we fight for people with disabilities takes
a lot of energy, and even though I know a lot of people care about her, I don’t know that any of
them could put the amount of time and effort into this that my husband and I have put into it.
So that’s a lot to worry about.
06:30:33:00 – 06:31:13:10
Lisa: By contrast, what is one of the more joyful aspects of having a child with a disability?
Dee: I think having a child with a disability, again, teaches you a lot about life and what is
important about life.
It gives you a perspective that few people have an opportunity to have.
I think especially in our society today, that so many people are superficial about life, and they take
so much for granted, and I think when you have a child with a disability, you don’t take anything
for granted anymore, you really don’t.
06:31:17:20 – 06:33:39:13
14
Lisa: You maybe already have done this, so if it feels redundant we can move on, but can you tell
me about some of the biggest obstacles that you think Gina’s had to overcome in life, either real
or perceived?
Dee: I think the biggest obstacles for Gina has been more society than it is her own personal
obstacles.
I mean, her health issues, her developmental needs that -- I mean, this is a human being who
had to struggle to get up off the ground and get on their feet, and then to learn to eat and to chew
and to just learn how to take care of their most basic needs.
And I think that for many people in society, they don’t see the worth of people with disabilities,
even today, even though a lot has been done in an effort to try to teach through film and young
people out there, self-advocates out there, I think especially because these are financially hard
times that something always has to get sacrificed, and I can see it won’t be hard to sacrifice
people with disabilities.
I honestly feel, and I’ve been saying this for a number of years now, that frankly, I think the
pendulum is swinging back towards institutional care for people because of what people see as
lofty cost that could be spent in different ways.
And I think that’s -- they’re the obstacles that Gina has had in the past.
Getting neighbors to accept her, getting family members to accept her, just being able to get
legislators to see what the issues are for people like Gina, and just to try struggling, fighting every
day, to get them services that will make their lives better, continue to be an obstacle every day for
them.
06:33:42:19 – 06:35:40:28
Lisa: What about Gina makes you smile?
Dee: Just who she is.
She’s -- I do see her -- her name is Gina, but I always think -- Gina comes from Regina, which is
queen, and Gina certainly sees herself as the queen.
She’s a very self-assured human being.
She’s a very sweet, gentle human being, and yet she’s very assertive, and I have never felt -- a
number of times Gina has served in law suits and has stood on lines and rallies, and you know,
people say, well do you think Gina wants to do that?
Oh yeah, not because Mom is there, Gina wants to do it because she believes in it, and I do
believe Gina believes very strongly in her rights, and that she enjoys being a part of that, and it
gives me great joy to see that in her, that I know that she is a woman on her own, she really is.
I mean, she needs a lot of supports, and they should be there for her, but she has a wonderful
personality.
She has a great personality.
I have never met anybody who doesn’t like Gina.
And she’s a social butterfly.
And as I said, like just -- I sent Gina and her staff over to this retreat house, which is a couple
blocks from us, and when she first went there, the sisters, who love volunteers, when they
knocked on the door and said Gina would like to volunteer here, they said, oh well, she could
volunteer outside, and she could pick up the papers and stuff.
Well, you know how long it took Gina to get in that house?
Not long.
And for all of them to fall in love with her?
Not long.
So I mean, I think it’s just creating the opportunities for someone like Gina, and she can break
down those barriers on her own, she really can.
06:35:42:00 – 06:36:53:11
Lisa: Would you say that your hopes and dreams now for Gina’s future are being realized?
15
Dee: A lot of them.
You know, I would love to see Gina have a real life before something happens to me.
Part of me wants that, but I think because I work in the system too, and I know the underbelly of
the system, part of me doesn’t feel that way.
I would rather see her leave here before me, which is a lot -- I mean, I work with a lot of families.
Most families feel that way.
It’s a selfish way to feel, but you feel that that’s the way you’ll know they’ll be safe, and they’ll be
okay.
I’ve seen so much neglect and abuse, and intolerance, even within our own system.
We have lots of good people in our system, and Gina’s met many of them, but we also have an
underbelly in our system that’s very worrisome, and the less money there is, the more worrisome
that’s going to get.
And Gina could be very vulnerable in a situation like that, and that’s a great worry for me.
06:36:56:05 – 06:38:42:21
Lisa: Is there something about Gina that you think no one else knows, and -Dee: That I know?
Lisa: Yeah, something that you think people should know about her.
Dee: I don’t -- Gina’s a pretty upfront person, and I think most people who get to know her get to
see who Gina really is.
Although there’s many times I feel Gina acts -- she acts -- like if we go somewhere, and someone
will say hello to her, she’ll kind of like not look at them, but I know that she certainly
acknowledges and knows that they’re speaking to her.
I think Gina -- you know, like I said, I really think Gina is a very outspoken in her own way, even
though she doesn’t speak words, she is very expressive about who she is, and most people who
get -- spend any time for her, for any length of time, would know who she really is.
Like Gina -- if you went in a crowd, when Gina goes into church or something, she may moan.
You’ll see some people right away get a little antsy about, oh gosh, but if you sit there for long,
before you know it, she’ll take your hand and she’ll hold it, and she’ll be doing the music with you.
And so if you give her a chance, you’ll see who the real person is, because she’s pretty -- she
doesn’t leave much to the imagination, I don’t think, Gina.
She’s pretty cool.
Chapter Four: Dee’s Early Advocacy
06:38:47:20 - 06:39:12:07
06:39:12:20 – 06:41:39:09
I’m wondering if you can tell me when you first started to connect with the parents of other
children with disabilities.
Dee: When Gina was about three and a half, I started reaching out.
When we stopped doing the (inaudible) patterning, I knew that she still needed to continue to
have stimulation and opportunity to be with other children and to learn, so I heard about a
program at (Kencrest ?), and at that time, families could take their children there, and they did -they were willing to take kids who were not completely toiled trained, because that was always a
big issue.
And they also were willing to take kids who were a little hyperactive and things like that.
So the only downside was that it was only a couple days a week, and it was half a day, and you
had to get them there and pick them up, and you had to pay.
16
And we didn’t really have a lot of money, but again, Vince continued to work a second job, to help
pay for some of the stuff as well, and Gina started her first experience there at Kencrest.
And it was a very nice experience for her.
All little kids, all little guys, all kinds of guys and girls, and they accepted her for who she was,
which didn’t always happen for Gina in her life.
So that was a really nice experience for us.
But over a couple of years, it became a little difficult for me, running there a couple times a week,
also having my other daughter in school.
And the financial cost that was involved, it became a little difficult for us to continue after awhile.
And then I had heard about the ARC Park it was called, at that point here in Philadelphia,
Philadelphia Association for Retarded Citizens, and that they had a full-day program, and you
didn’t have to pay.
So I did enroll her there, and Gina started to go to school there.
06:41:33:11 – 06:42:44:25
Lisa: And Dee, when Gina started to go to school, did you begin to connect with other parents?
Dee: I did, and I found that a very rewarding experience, because I think when you’re a young
mom with a kid with a disability, you really think you’re all by yourself.
And in fact, Gina actually got into a little program at a Catholic school, for a half a day a week, on
a Saturday.
That was really my first experience, and you couldn’t leave, because it was only for about two
hours.
It wasn’t worth -- and usually anywhere Gina had to go, it was a lot of travel involved, and I had to
learn how to drive to do these things, and we would sit together as moms, and we found great
camaraderie with each other, and we would laugh together and cry together and talk about
different things that happened together, and you realize you’re not alone anymore.
And that many people are having the same experiences you are, but it’s nice to be able to share
that with someone else.
It became like a support group, that very first little group we were involved with.
06:42:46:03 – 06:43:42:00
Lisa: You’ve talked about this (inaudible) Saturday program, and going to Kencrest as well.
But back in those early days, did you ever think that it would be possible for Gina to go to school
like a typical child?
Dee: Well, they would have the psychologist come once a year and evaluate all the kids, and I
would try desperately to teach Gina to build blocks, because you had to be able to build blocks.
She wasn’t completely toilet trained, and she still couldn’t chew or feed herself.
So there were lots of issues, but I kept hoping, but every year they would say she was
uneducable and that she was not eligible to go to school.
And you know you kept trying very year, but Gina was about 11.5 before she finally got in school,
and that was only because we had the consent to create that came out of the right to education.
06:43:44:20 – 06:44:58:28
Lisa: So when you first became involved with the ARC, in the early ‘70s, which was around the
time of the Park Consent Decree, was a pretty remarkable time.
The Park Consent Decree was probably the first major piece of legislation that the ARC had
moved forward. It opened up schools for kids with disabilities.
Although it was a decree that opened schools, it was probably very widely acknowledged that it
was really the first step, the Park Consent Decree, into closing institutions.
So as a member of the ARC at that time, were you on board with that idea?
17
06:44:58:28 – 06:47:09:22
Lisa: When you were a young parent getting involved with the ARC for the first time, again a very
exciting time, the Park Consent Decree had just been -- or was in the process of -- coming to
fruition, but it was also considered to be a first step toward closing institutions, part of a longer
strategy that the ARC had.
And did you approve of the direction that the ARC was taking?
Dee: Oh, absolutely.
I think it was important for the ARC to move forward and to get our kids into school, to break
down those doors and to open the doors of the institution and return people to community.
And even as a young mom, I saw the importance of that, because I wanted Gina to always be in
the community, and I wanted her to be in school like her sister, and you know, to have a chance
to learn, whatever that learning meant for her, that she had that opportunity.
So I was very much for it, and in fact, I -- when I became active in the ARC, I was the first right to
education person that the ARC used to begin to establish relationships with families and try to
reach out to talk to families about right to education and it was important to get them in school.
And I think there was where some of my reluctance was, is I went and looked at a lot of the
programs, even in terms of placing Gina.
For someone like Gina, they really weren’t still the kind of classes that Gina needed, nor did the
teachers have the skills they needed to teach someone with significant disabilities.
And it was a struggle for the teachers, but it was a struggle for the kids that were going in there,
too.
It was exciting, but kind of scary times, because you were stepping out into new ground, and with
people who to some degree didn’t even really want you there in the beginning, but also once they
had the kids there, they didn’t know really what to do with some of -- especially the kids with
significant disabilities like Gina.
06:47:10:14 – 06:49:57:01
Lisa: Dee, you mentioned that it was a scary time, and I know that throughout the PARC Consent
Decree, and subsequent legislative action, parents were -- many parents were afraid to sue the
state for the right to education.
I know the divisions ran so deep that one of the ARC presidents, was it Eleanor Gephart,
resigned rather than go forward with PARC
And I’m just wondering, as you were out advocating for families, if you got a sense of that fear
and what you did to assuage that fear.
Dee: I don’t think families were -- I didn’t run into families that were afraid of the opportunity.
I think they were perhaps concerned about the ability of folks being able to deal with things, but
many of us -- they were very exciting times.
First under the right to education, and then when we got public (inaudible) 94142, the school
district didn’t know what to do with us, either.
It wasn’t just what to do with our kids, it was they didn’t know what to do with us, either, and some
of us were -- I guess I’ll speak for myself -- were zealots, and once we got in that door and we
knew we had the right, we were going to fight to make that -- to bring it to fruition for them to have
a real education in those programs.
So a lot of the families were thirsty first to reach out to other families, and to know what to do.
I wrote several pamphlets to help people understand what to do when you got in the school, and
how to exercise those rights, and I have met so many wonderful people in my life, just because of
my daughter, again, and many of them are families.
I have the greatest respect for families of kids with disabilities, I really do, and many of them were
willing to take a lot of chances with me, because I did become kind of like the advocate for many
people, and I often would get them to do things that at first they were a little reluctant to do.
But the school district didn’t know what to do with us, and we did some pretty interesting things, to
try to convince them that we weren’t going to go away, and that they were going to have to fully
18
exercise people’s rights and see that they got the opportunities they needed, and the supports
and services they needed.
It was a good time.
I kind of enjoyed it.
06:49:57:25 – 06:52:51:21
Lisa: you mentioned that you had some co-zealots in this fight, and I wondered if you could tell
me, maybe, about some of those folks.
Dee: Well, Leona Fialkowski was not only a zealot but my mentor, and she’s one of the first
moms that -- I read an article in the paper about her, and how she had started a little program for
the first time for people with significant disabilities to have a classroom opportunity in a public
school.
And I don’t know how I found her phone number.
I guess I looked in the phone book and I called her, and before you know it, I mean, Leona was
several years older than me, but she instilled in me that you have to get up, and you got to fight,
and you got to join forces with other families and you have to see that these kids get into school,
and that they get services.
So Leona certainly was probably my strongest mentor, but then some of my peers, Pat Armstrong,
who I happened to meet because her son had a tragic experience in school, and someone told
her to contact me, because I was the advocate, and Pat and I became great friends.
And her son who -- Gary Armstrong, who has passed away a number of years ago now, but
served as the plaintiff in one of the cases, because we got very involved with some of the civil
rights attorneys.
He served as the plaintiff to bring about extended school year programs, that now are across the
entire country, and Maureen Devaney, who I -- her and I became great friends in school, because
our kids all went to the same schools.
You really have your own little culture after awhile, because you all show up in the same places,
you know.
And certainly Maureen and I became great friends and have traveled this road a long way
together at this point, and I hope we’ve made some differences for people.
We’re quite different, but we’re quite alike, too, in many ways.
Our kids are very great friends, too.
Her daughter Colleen and Gina are great friends.
And I think of Nancy Greenstein, Eleanor Elkin, who to me is -- I told you I want to be just like her
when I grow up.
I tell her that all the time.
I don’t think I have more respect for anybody in the world than her.
She’s the Grand Dame, and she has certainly made an incredible difference in the world of
people with disabilities.
And just to be able to be in their shadow a little bit has meant a lot for me.
06:52:52:21 – 06:53:12:15
Lisa: Eleanor is the Grand Dame, isn’t she?
Dee: She is the Grand Dame.
Just walk in a room with her anywhere, and you’ll find out she’s the Grand Dame.
Everybody adores her.
06:53:14:20 – 06:55:33:07
Lisa: You said Gina was 11 when she started school, and I wonder if you could tell me a little bit
about what her first day of school was like.
19
Dee: Gina initially went to a school called Torresdale School, which is -- it was a lovely little
school.
It was segregated at that time, because we still weren’t talking about inclusion, but we were lucky
to get in the doors of somewhere, even if it was with other people with disabilities who were
considered educable at the time.
So Gina went to a little school called Torresdale, and it was on a nice piece of ground, and in the
far northeast, and she seemed to enjoy going to school, but it didn’t take long before it was clear
to me that people didn’t have a clue what to do with someone like her.
And I went in the school and found them tying her up, and trying -- well, it wasn’t positive
approaches, it was behavior modification on her, with putting eye guards on her face so she
couldn’t see.
And a lot of it was because Gina was so hyperactive, they just didn’t know how to get her to focus.
It wasn’t that these teachers were bad people, they just didn’t know what to do with them.
And in fairness to them, we owed it to them to help them to learn, and I think we threw everybody
in there, you know, and assumed because you have the right, that that brings everything else with
it, and it doesn’t necessarily.
And so many of us had a hard time with our kids being in school for awhile, trying to work with the
teachers and helping them understand our kids, and finally, Gina served as one of the plaintiffs to
go back to court, to figure out what was quality education.
Was what Gina getting quality education?
And we brought a lawsuit into the federal courts, again, in an effort to help the teachers to try to
establish -- the teachers really needed to have additional education to try to work with people with
significant disabilities.
06:55:33:16 – 07:01:14:07
Lisa: And what was the result of that lawsuit?
Dee: Life skills programs, the (inaudible) across Pennsylvania, where people with disabilities -somebody’s not necessarily trying to teach them math or how to read a book, but how to get their
clothes on, and how to take care of their hygiene, and how to maybe make a sandwich, and how
to go out in the community and have activities, whether it’s shopping or -- some of it, after awhile,
got -- I thought they took a good thing, and they meant well, but everybody did the same thing.
Wherever you went to school, everybody went to the Laundromat, and I would say to the lawyers,
my daughter doesn’t need to go to a Laundromat, because that’s not how we live.
We have a washer and dryer in our house.
If anything, she’s not going to put coins in there, so why do we want to teach her to put coins in a
Laundromat?
And then we had to bring in more people, like Lou Brown, who is another guru that I just adore,
who sees things pretty simply for people and their families, and teach people that it’s more about
the person, it’s not taking a model and thinking everybody belongs in this one model about how
you teach people with significant disabilities.
It was a long road, and we were in court several years, and actually I served as a chairperson on
the committee for Judge Becker, who was in charge of that particular case in court.
But you know, the unions were fighting you.
We had some interesting experiences.
One -- during these court hearings they decided that teachers needed to learn, so that they were
going to give our kids off for a week while the teachers learned, because teachers didn’t want to
go to school -- or Saturday or Sunday during the evening.
So the outcome was going to be our kids sat home when everybody else’s kid in the school
district was going to school.
So Pat Armstrong who lived up the street from me decided that that wasn’t going to happen to our
kids.
And I talked to the lawyers, and I said to them, this isn’t right, why are our kids being penalized?
Because the teachers don’t have the skills they need.
Why do our kids have to sit home?
20
Well, this is the agreement we came to, and I thought, well I’m just not paying any attention to
them.
And Pat and I packed up the kids’ lunches, and we knew that it was really our kids’ rights to go to
the school around the corner, so there was a tiny little school around the corner from our house,
and we packed them up.
Gary was in a wheelchair, and I took Gina by the hand and we took them down and we went
down to the school, and went in with the wheelchair and Gina, and you know, we went into the
principal’s office, and they said, can we help you?
And we said, yeah, we’re here for our children’s day of education.
And they looked at us like they didn’t know what we were talking about, and they said, well this
isn’t the school they go to, and I said, not ordinarily, but this is the school they’re going to go to
today.
And we did some really outrageous things, but you know, it was important to make those
differences, because people really still didn’t get it.
Sometimes even our lawyers didn’t get it.
So we went in there, and she said, just sit there, go out and sit on the bench, the principal’s
bench, and we’ll go get the principal, and the principal, this cute little guy, comes running down
the hall.
And he says, oh hi, I think you’re in the wrong school.
And I said, no, I’m not in the wrong school.
I live around the corner, and this is my neighborhood school, and my daughter should be able to
go to school here.
She just happens to have a disability, but she can go to school here today because she’s not
going to her regular school, because they closed it for the day.
And I pay the same taxes that these other children’s parents pay, and she’s going to school here
for the day.
And he goes, please, don’t leave these children here with me.
And he said, let me go call somebody.
And he went out and he called the lawyers for the school district.
And he came back in about a half hour, and he said, don’t leave, but don’t leave them here, either.
And we said, okay, we’ll wait, and he came back in about another half hour, and he said, there
will be two teachers here, and we’re setting up two classrooms, and they’ll go to school here for
the week.
So I walk home, and as I’m coming up my front steps, the phone is ringing, and I know it’s going
to be the lawyers.
One of our public interest law centers, who I -- I love these guys, but they didn’t know what to do
with me sometimes, either, and he gets on the phone and he -- what the heck did you do?
And I’m using better language than he did.
And I said, I’m exercising my kid’s civil rights, something you should have done for her.
And he said, okay, just don’t tell anybody else.
So our kids went to school that week, and I think it was important for them to learn that you don’t
make settlement agreements either, or even short-term compromises, without including the
people that it’s about.
And I think even the lawyers and the ARCs and everything else over the years had to really learn
that from the people and their families, because I think for a very long time, it’s always been about
the professionals, and not about the people, the true people, the true stakeholders in this.
And I think it still continues to be a bit of a struggle.
But the more the self-advocates are up there and in people’s faces, the more you’re going to see
less of that.
And in the early years, the moms had to do it, and the dads.
DAY TWO
07:01:50:05 – 07:02:33:09
21
Lisa: my name is Lisa Sonneborn, and we’re here at Temple University interviewing Dee Coccia
on Friday, July 8, 2011.
Also present is Lindsey Martin, our videographer, and Dee, do we have your permission to
conduct our interview?
Dee: Yes, you do.
07:02:34:00 – 07:03:35:08
Lisa: When you joined the ARC, and again you joined the ARC at a time that was so fascinating
in its history, when they were just about to make some significant legislative change with the
PARC Consent Decree.
So I wanted to ask you, who were the leaders of the ARC at that time, and what did they mean to
you as a young parent, or how did they impress you as a young parent?
Dee: Some of the leaders in the ARC at that time were folks like Edith Taylor, who was a mom
herself, but she was the executive director of the Philadelphia ARC, and at the state level, one of
the people I remember is Elsie Schmidt, who is also a mom, and she was, I believe, president of
the state ARC.
And they were the people that I remember the most.
After I got involved -- as a young mom, I didn’t have much time to give, going to ARC meetings
and things like that, so until I actually became an ARC board member, I didn’t really get to meet a
lot of the other people.
07:03:36:14 – 07:04:38:16
Lisa: Did you ever hear folks like Jim Wilson or Dennis Hagerty talk to parents about the types of
changes that they wanted to see through the Park Consent Decree, and the changes they wanted,
both in education and in institutionalization?
Dee: I was not able to -- in terms of talking to folks and listening to them, Jim was on the board
with me when I did join the board.
Dennis was a little more far removed, because he was more involved in litigation stuff.
One of the first persons I remember as a young mom meeting was Tom Gilhole, and he was quite
an inspirer, and quite able to encourage young families to follow him down that road with him, as
we began to open the doors of the school districts.
So he is really the person who sticks out most in my mind, and that I still hold a very dear
relationship with, all these years.
07:04:39:10 – 07:05:06:03
Lisa: Were you in the courtroom, Dee, during the PARC hearings?
Dee: More for the Pennhurst suit.
I spent a lot of time in the courts with the Pennhurst suit.
I did not spend a lot of time in the courts -- in fact, I was not really aware that a lot of that was
going on at the time.
And again, when you’re a struggling young family and you’re dealing with the day-to-day things,
you don’t always get a chance to do all of that.
07:05:07:10 – 07:07:23:03
Lisa: You mentioned Tom Gilhool as being an inspiration in your career.
I’m wondering if you can tell us a little bit about what it was like working with Tom.
Dee: Tom was really a very interesting person.
He was very charismatic.
22
He often reminded me of the Kennedys, and he was really able very much like John Kennedy to
be able, again as I said, inspire you to follow what he was about to do.
I mean, it was quite scary for a lot of families to think about leaving the confines of small daycare
centers, even if they had adult children, to begin to move out into the school districts and into
schools that they had little or no conception of, and they weren’t usually in your neighborhood.
So it was really kind of, you know, anxiety-ridden.
But Tom clearly inspired folks like me, and Leona Fiokowski, to follow him, and to also work with
him many issues.
We worked with inclusion later on, and getting the kids out of segregated schools.
We were glad to be in a school at all at first, but we then wanted very much to move out into
inclusive opportunities for the kids.
So Tom was inspiring.
We spent many a day and night together, both here and in Washington, D.C., and Boston, and
his ability to envision where we needed to go was awesome, and he was involved in the
Pennhurst suit as well.
So I mean, I had also seen him in the Pennhurst suit, but was very excited when we found out our
kids can finally get an opportunity to leave those daycare centers, and really go to school.
07:07:26:26 – 07:11:07:05
Lisa: In the ‘70s, you and other parents joined forces, I believe, to push schools to do away with
the segregated classes, and to have more inclusive classes, I believe.
How did teachers react to that?
Dee: I think at first, they were afraid, because they didn’t have the skills that are really required for
really kids -- I mean, a lot of our kids who ended up going into the school, that last group of
individuals who went in the schools were people with more significant disabilities, and although
they were -- they did have classrooms for kids with mild retardation at that time, and kids who
were considered trainable.
I mean, some of the words that they used for folks at that time, thank god they’re not here
anymore, but they were used to dealing with kids who had, you know, a certain ability to
understand, to respond, and to communicate with them.
So when they were then confronted with children who often couldn’t speak, often had a lot to
learn yet, and to be able to be able to take care of themselves, they didn’t know what to do.
They didn’t know a curriculum, they didn’t have that in school, and so they struggled, they really
did struggle.
Some of them were, again, all-inspiring, because they figured it out on their own, but many
struggled for quite a few years, until we finally did go back with Tom Gilhole, the public interest
law center, and we did fight for what we considered, what was quality education for people.
And that took a few years.
We were in the federal courts for a few years, and we tried to work with the school district, and
the teachers unions, because they were involved, and we were able to get some education
opportunities for teachers, curriculum built into some programs, I guess graduate programs, but
you know, many years ago, when I was involved in educational stuff, of course I was a fireball,
and you know, once you told me as a parent that my child had a right, you couldn’t stop me.
But I remember being with someone who was working with the school district.
In fact, he was considered to be the right to ed person in the school district.
His name was Wynn Tillery.
And we were out somewhere together, and of course I was always fussing at him for what wasn’t,
and what needed to happen, and he said to me one day, you know Dee, this is not about
revolution, this is about evolution.
And I was quite -- I was quite offended by that at the time, but now that I’ve grown a lot wiser and
have been through many, many battles, I realize that what happened in the civil rights movement,
for many other people, is also what we see in the disability movement, and it is evolutionary.
You can pass all the rules and regulations and laws in the world, but there’s still a process that
society has to catch up with, in order for it to really work, whether it’s a school teacher, or your
23
neighbor, or anyone else, and that that evolution is truly there, and even if we do watch the civil
rights movement, we can see that.
Doesn’t happen overnight.
07:11:08:00 – 07:12:02:14
Lisa: Is this a civil rights movement, do you think?
Dee: Absolutely, absolutely.
It’s the last bastion of the civil rights movement.
Sometimes, in many ways, it’s still a very hard fight, because a lot of folks with disabilities are
voiceless and powerless, not that many people in the civil rights movement weren’t, either -- they
were, but people joined forces with them.
But their struggles are their struggles, and I think it’s important for us to realize, as we look at
people in the civil rights movement, as we move up behind them, this is a battle to me.
I must have been a general in another life, but to me this is a battle, and you keep moving up the
forces, one by one, and this is the very last bastion.
Doesn’t mean we’re going to win it tomorrow, doesn’t mean the civil rights movement will win it
tomorrow, but we have to keep moving forward.
07:12:04:10 – 07:12:27:11
07:12:32:00 – 07:14:16:17
Lisa: Dee, you became a member of the board, and of the executive board.
The ARC was providing services to people, I believe, with disabilities in the late ‘70s, including
sheltered workshops.
As a member of the ARC or as a parent, were you happy with that direction?
Dee: At that juncture, I think that we weren’t unhappy with it, because at least people had,
especially as they became adults, when you moved out of the school districts, you fell over a cliff.
There was nothing for folks -- there weren’t supports, there weren’t services, there weren’t
funding.
So if you were lucky enough to get a placement, even in a workshop, at least it gave people
something to do with their lives each day, rather than sitting home.
I think of someone like Gina, who is very high-energy person.
All these years she had the right to go to school.
She knew every morning she got up, and she ran out and got on that school bus, and she had a
day full of something to do with her life.
And when she turned 21, that kind of stopped overnight.
And in fact, we have a number of family members that we’ve interfaced with who, when their kids
did leave school and there was nothing for them, a couple of them did have mental breakdowns,
because going back to doing nothing, and sitting in a room and just watching the TV and feeling
that you had no importance, was very hard for them.
07:14:19:25 – 07:19:10:00
Lisa: You had an opportunity, as a member of the executive board, to influence the direction of
the ARC.
Dee: You know, again, Gina changed my life, as I said early on, and experiencing, I don’t know,
the devaluation of our children, really did make me a zealot, and as I entered the school district I
became -- and felt that we had some rights, then I really felt like I had a platform to stand on.
But I felt within the ARC’s -- they were still struggling, too.
I guess sometimes you create a monster when you give people rights, because then they’re
going to fight for them.
And for some of the ARCs, I think, again, it was a struggle for them to move away from
professional boards, and begin to accept families on the board, and then for some of us who felt
24
very strongly self-advocates should be on the boards, even all the way back then, it was really
hard for them to accept.
So after serving on the board several years, and trying very desperately to voice those concerns
and the need to see people with disabilities and family members play more of a major role, and
seeing the need for -- I did feel after our kids got into school, they needed advocacy.
Just walking through that door didn’t mean anything, and for some of them, they couldn’t get any
services after they got in there.
And so families didn’t know how to fight those battles.
They knew they had a right to go in that door, but they needed someone to support them after
they got there.
And actually, within the ARC, they did make me the head of the rights education for Philadelphia,
and that gave me an opportunity to reach out to families and eventually to force the task force,
which was also somewhere where 51 percent of the people in there should have been people
with disabilities and family members, and there was no one, except Edith Teror, who was the
executive director of the ARC.
And so genteel played a role, and because of my extreme advocacy within the organization itself,
he gave me some work to do, I guess to keep me busy, but he gave me an opportunity to go on
that task force and turn it around.
But the ARC, for me, who had decided I do have rights, and that people should be listening to
what we had to say, after about three or four years of a very strong battle with some of the board
members, I did attempt to take it over, and it was quite an interesting effort.
And the state ARC was behind me, but in the end, we didn’t win, because we didn’t have the
powers that the ARC itself had at that point.
And again, I don’t blame any of them.
I don’t blame myself.
I wouldn’t do anything different today than I did then.
In fact, I’m very proud of what I did.
So I created an additional reputation for myself, but they weren’t ready at that time to accept more
people with disabilities and family members on the board, and to deal with some of the issues
that I felt.
If you’re going to raise money, you use it to support people and not just to justify your existence.
And as I said, it turned into such a battle that there was an election, and it didn’t -- it was an
extremely interesting election, and as I said, we didn’t win in the end, but we had a board where
at the Philadelphia ARC when I was there, you were lucky if ten people ever came to an annual
meeting where there was an election.
When I ran a slate against the -- and I was on the original slate, but I ran an additional slate
where I was going to take over the presidency, and I had a whole slate of people who were willing
to go with me.
And we didn’t win, but for the first time ever, there were over 500 people who showed up for that
election when there used to be ten.
So there was enough -- we lost by a small amount, but we lost, and that’s okay.
So I just took myself off and went in a different direction, and started another organization with
folks who were with me on that ballot.
Chapter Five: Dee Advocates for Families
07:19:22:00 – 07:20:29:07
Lisa: Dee, you talked about the fact that you narrowly lost a vote at the ARC.
How did your advocacy change at that point?
Dee: I certainly had gained a lot of skills around education, and how to help families with kids with
disabilities, so needless to say, I already had a bit of a history with families, and the word would
spread, and I did most of my advocacy maybe for the next seven or eight years from home.
And there was hardly a day that the phone didn’t ring, or there wasn’t a family asking for help.
And I was able to do it and not worried about anything, because I didn’t want any pay.
25
I considered it a privilege to help them, and it gave us a great camaraderie amongst ourselves as
well, and really helped when some of us wanted to build on other organizations, to be able to
reach out to those families, and tell them, you can join this if you want, to have the support of
other families.
07:20:30:00 – 07:21:49:12
Lisa: What kinds of issues did families call you about?
Dee: Many of the times, it was the lack of ability to get services, especially things like speech
therapy, physical therapy.
The schools really would fight them about giving them services.
Also, it was sometimes teachers who weren’t quite qualified to handle their children’s needs.
Rarely it would be anything around someone who has been, you know, abused in any way.
It was very rare.
It was more the lack of services, and in fact, a number of us who lived in the northeast realized
that we were all placed in fire families, and that we were all up there in the northeast together,
because you can’t move outside the city.
And we felt we were kind of like stuck, someplace where maybe somewhere else you could have
went and gotten more service, but in Philadelphia you weren’t going to get it.
So we formed an organization, a place in fire families, and we worked really hard for a number of
years, helping families to get services, going back and going into the courts with (pillcop ?),
places like that, to work on the issues around quality.
07:21:50:20 – 07:27:12:02
Lisa: What do you think was the basis of resistance for teachers or systems, to delivering that
quality?
Dee: I think money is always an issue.
I think it is a basic issue that they just -- and I do think there was a certain level of resistance,
because they really felt that some people with disabilities do not benefit from school, and as a
personal story, when Gina was in school, Gina didn’t get into school until she was 11.5, and I
certainly knew what her rights were, because I made it my business to read everything under the
law that would apply to her, under the consent agreement, and when I went to the principal and
asked about speech therapy, because Gina didn’t speak, they said, well reluctantly they would
assess her for that.
And I was called in by the speech teacher after, and she told me that Gina really wouldn’t benefit
from any type of speech therapy, because she didn’t have any guttural sounds, she made no real
effort to communicate, and she really didn’t think it was to the benefit of the other kids in the
school for me to be asking for services for my daughter, when she wouldn’t benefit from it and
they would, and that did I find it the right thing to do, to deprive somebody else, just so Gina could
have something she’d never benefit from.
And because I had such a sense of righteousness about this, I said give me the pencil, give me
the list, I’ll take somebody else’s name off, because she has the right to that.
Over the years, Gina did really -- I finally went out and found somebody who was working at
Woodhaven, because they were trying signing, and my mom helped me, because we really didn’t
have a lot of money.
She helped me get a speech teacher that was there to see her privately, and I would take her a
couple times a week, and we went about eight weeks, and you wonder then, so you begin to think,
you know, maybe this isn’t something that Gina can do.
And just like that, she started to sign, and you know, today she uses it when she chooses, but
she can sign, and she knows about 200 signs, and she has 100 ways that she communicates
today.
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But I just think of how many parents must have sat in that room with a teacher like I did, and
because so many people had such a low opinion of people with significant disabilities, that they
bought that from the teacher, when she said your kid won’t benefit from this.
And that was a real tragedy.
But even getting the kids in with autism, I mean, we had lots of kids with autism who were also
kids with intellectual disabilities as well, and helping those families get into the schools.
The teachers were trying.
Sometimes it was upper administration that was the hardest people to deal with, and they were
holding the line, they were trying to hold the line to keep us back, and you know, I think we had a
good little army of families that fought real hard.
Pat Armstrong comes to mind.
As I told you, her son had significant disabilities.
He actually had a disease that he eventually died from, and over the years he regressed terribly
from a normal little kid at three, who could speak and run around, to a kid who was on a respirator
-- not a respirator, but aspirated all the time, that was blind, couldn’t hear anymore, and by the
time he was 15, he passed away.
But I sat with Pat in many meetings with the school district, because they fought her every inch of
the way to give him anything, because to them he was a dying kid, he wasn’t worth the trouble.
And we would sit in that room, and they would bring in an armload of people to fight her and that
kid, and I remember one time, one of the lawyers who usually was there, who fought very hard
against us, both there and in the courts, was replaced by another guy temporarily, because he
was out on sabbatical, and when we came out of that room for a break, Pat and I stood there, and
this young guy who was an attorney came out, and he stood beside us, and he was supposed to
be representing the school district, and he put his head up against the wall and closed his eyes
and said to us, I don’t have the stomach for this.
So there were lots of people in the school district that were doing what they were told to do.
We fought hard.
We had kids who were sitting in schools with lead centers, because they certainly didn’t want our
kids in the regular public schools.
If they were, they were in the basement, or the room down the hall.
So the fights -- it wasn’t easy to get those kids into school, and it continues to be a struggle to see
real inclusion, but where it is, it works, and it’s good not only for the kid with a disability, it’s good
for the other kids in the room with them.
07:27:16:17 – 07:29:06:21
Lisa: At any point you could have focused your advocacy really just on the needs of your
daughter.
Why did you continue to advocate for other families?
Dee: I advocated for other families because I felt they needed somebody, and I knew my own
personal struggle and what it was like, and I felt whatever I had gained in terms of knowledge or
skill, I owed it to them to share it with them, and it gave me pleasure to support them, and I was
lucky enough to have a mom who would come and sit in my house and make sure that Gina got
off that school bus and was okay with my other daughter until I got home, and I spent many days
and nights out of my house with other folks, but it was pretty funny when my mom used to be in
my house a lot, because she’d be looking after Gina, and I’d be running to, you know, meetings
with the school district, people’s IEPs, and the phone would ring and it would always be another
parent, because the word would just spread and spread and spread, and the first words out of my
mother’s mouth to them was always, are you a retarded mother?
And we got so much joy out of listening -- I mean, at that time, as I said, mental retardation was
not a bad word.
But it was so funny that when my mom finally passed away, all the moms who knew her said that
they were going to send her flowers from all the retarded mothers.
And she’d always say to them, you need to get up and fight, you need to get up and see that
people get the services they need.
27
And she didn’t really have a good grasp on all this, other than what she knew about Gina, but it
was enough for her to, too, encourage those families to stand up for what they should have.
07:29:09:00 – 07:29:50:11
07:29:50:23 – 07:30:46:21
Lisa: I wanted to ask you about the time you decided to go back to school.
Dee: When I got into my 40s, I was working with a judge in the federal courts, and my oldest
daughter was old enough that I felt that she was able to be more on her own.
She was getting ready to go graduate from high school, and Gina was doing pretty well in school,
most of the time, and I decided to go back to school, came to Temple, to the school of social work
for continuing education for women, and I also went into -- when I left there, I went into geriatrics
and worked with people who were aging for about ten years.
And I can tell you, they were great stepping stones for me, for what obviously lied ahead for me,
that I didn’t realize.
07:30:49:00 – 07:36:39:29
Lisa: And so what was lying ahead for you, Dee?
Dee: Well, I was still in geriatrics when a friend of mine, Maureen, told me about something that
was happening at Woodhaven, and that there was a court order to move a lot of people out of
Woodhaven, under a class action suit called the Danny B. Case.
I wasn’t aware of the case, but she suggested I might want to think about doing it.
And to be honest with you, I never had real experience with families whose kids were in
institutions, but I certainly was interested in considering doing the job, and so unbeknownst to me,
I was really walking into a hotbox, and but I went in, and I met those families.
Initially, most of them were very angry families, because their family members, or people who -the families there had a great support group between themselves, and when somebody was
breaking that line and pushing them out the door, they knew that their own kids were also
threatened.
So some of the leadership of the family group at Woodhaven -- Ed Fein was the president, I
believe, at the time -- I did not know who he was.
Here he was a big labor negotiator, and I made it my business, one of the first things to do, was
to sit down and meet him.
And he also -- I think he was actually labor negotiator for temple, but I met with him down at
Temple, and we sat and we talked, and he told me what his concerns were.
A lot was that people were being moved out without a lot of consideration where they were going,
and he felt some of them were being moved into unsafe homes and unsafe neighborhoods.
And I told him I was going to try my best to hear what he had to say as well as others.
One of the interesting things as I met all of those families is, once they knew I was a family
member myself, it immediately dropped some of those guards down, which was a great
opportunity for me to really get to know them and to build relationships.
But they always felt immediately -- they asked me first what institution my daughter was in, and I
would tell them that she wasn’t in an institution, she lived at home, and then they felt so
compelled, each and every one of them, to tell me why -- what led to their son and daughter
being in an institution, like they needed to explain or somehow justify what had happened.
And I tried to explain to them, I didn’t think, first of all, that I was certainly not there to judge them,
I was only there to help them, but that I certainly could appreciate and understand why in the
times when they did what they did, they were forced to, and that I respected them for it.
And to be honest with you, again, after geriatrics, this was my next experience that, again, I felt
was a step up to where I was going.
And I spent about four years helping to move those people out, and then following them once
they got out, with their moms and their dads, and I think every one of them was great.
Did with mom and dads that were in their 80s, and younger mom and dads, but all of them were
very fearful, and when I went and visited some of the places they told me about, I didn’t blame
28
them for being afraid, and for wanting to see their sons and daughters if they had to leave, that
they’d be somewhere where they felt that they would be okay.
For some of them, I felt they probably had family members who were in their 60s and 70s and
80s, they had felt that they had finally placed their sons and daughters someplace where they
could rest when they were gone, that they were okay.
So they could fold all of that up, and put it in jure, and here comes a lot of folks who think they
know everything, and they’re going to move them out, because that’s really the best thing that
could happen to them, which really made them add a question to themselves -- what I did was
what I did wrong, and they didn’t do anything wrong.
And I really -- I fell in love with all of them.
I would often go and visit all of them in their houses and have dinner with them, and just sit and
chat with them.
I really, really liked them a lot, and they were wonderful families.
We have a lot to respect in these families, because when I would listen to their stories, I don’t
know that I would have had the courage to do what they had to do, and I really felt that they -they walked that journey before us, that was the hardest one of all, to do something where you
would place someone you loved far away from you, somewhere, because it was going to hurt the
rest of the family if they didn’t, or because there was nowhere for them to go and get the help that
they needed.
And when I met some of the siblings or the parents, they were incredible, they really were, and
you know, they -- I mean, Woodhaven certainly was no Pennhurst.
I just -- and I was always clear with them, that I believed in community, and they needed to
understand that, that I did believe in community, but I didn’t disrespect where they were coming
from, and that what I had to do was under a court order by a judge, a federal judge.
But I would do everything in my power to see whatever happened to them was what they thought
they could feel comfortable with, and that their son and daughter would be okay.
07:36:40:29 – 07:40:39:15
Lisa: Dee, did you ever feel conflicted?
Did you ever meet a child that you felt wouldn’t fare well in the community?
Dee: You know, there was a number of folks that I moved out -- I moved people out of -- this is a
great story.
I met a woman who lived at Elwin, in media, and you know, she lived in a building, and they had
like a great room where everybody would gather, but it wasn’t a home.
But the minute she saw me come, she realized right away I was there to try to take her out of
there, and she was about 75 or 80 years old, and she immediately said to me, I’m not leaving
here, so get that straight.
And I met about three or four people, especially out at Elwin, who made that clear to me the
minute I met them, and these weren’t the moms and dads, this is them.
And she went on to tell me that her life -- how many times she had been moved from place to
place, and she said, you know, I’m 70-some years old.
I have no intention of moving again, and this is where I’m going to live out my life.
And after visiting her several times, I did write a report about her and several of the other people
there that we really needed to respect, that this wasn’t about us, or even about a civil rights
movement, as much as it was about the person, and that to some degree, we had to respect that
if you’re 70 years old, if you want to stay where you’re at, we have no right to make you leave.
So I worked with her for a long time, and she was adamant.
I said, let’s go out, we’ll have lunch, just to get her to move out into the community and seek
community.
She was very resistant.
I’m not leaving, I’m not going.
I think she thought if I took her out, I would never bring her back.
And I had someone else get -- I talked to the city and asked them if I might bring somebody else
in to work with her and talk to her a lot more, because I didn’t really have the time.
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I was moving about 119 people out, so I couldn’t spend as much time as she needed to be able
to be reassured, and there’s a woman called Mary Monahan, and she went out there and she
would spend time with Mary, and after about a year, actually on my birthday, Mary called me, and
-- oh, before that, they had gotten a house for her, and it was a lovely house.
They built this house and they were going to move three people in from Elwin.
And so I said to her, let’s go to the house, and Mary and I went with her, and she got in the car -she finally went out to lunch with us a couple times -- and then she finally said, oh okay, I’ll go to
the house.
But when we pulled up at the house, Mary and I got out, she wouldn’t come in.
So we went and did that a couple of times, and then we thought we didn’t want to press her
anymore than she wanted to be pressed, and just like that, about two or three weeks later, she
called me on my birthday, to wish me a happy birthday, and to tell me she decided to move in.
And Mary just recently passed away, and she lived in that house for a good maybe ten, 12 years,
and I think her life was enjoyable.
But we let her do it on her terms, and I think we owe that respect to anybody with a disability, to -I believe in community.
My daughter’s always lived here.
I don’t think anybody should ever be segregated or live in a state institution, or even a big ICFMR,
an immediate care facility.
Even small ones, I think people should live real lives, just like we do.
But I also respect that when we haven’t been on their individual road, and we have to respect that,
as well as their families as we move them out, that they need to be heard and listened to, and we
need to work with them, not force them.
Chapter Six: Visions for Equality
07:40:43:00 – 07:46:08:01
Lisa: Can you tell me a little bit about how Visions started, and why you decided to open your own
agency?
Dee: Well, Visions started first because I had taken that job for Estelle Richmond, moving people
out of -- the Danny B. people out of Woodhaven.
Certainly not to blow my own horn, but it went so successfully that they were able to finish the
case with Judge Shapiro and close it, and the whole 119 people left; nobody stayed behind.
And shortly thereafter, they were trying to close Embreeville, and there was a settlement
agreement that was reached in the Embreeville case that required consumers -- family
satisfaction teams, and that they be independent of the system, because the families there also
were fighting very hard to -- number one, they were fighting not to close it, but once they realized
they couldn’t stop that, they fought very hard to see that what they wanted for their sons and
daughters, and the people that were leaving there, was honored.
And they wanted these teams set up who would be separate from the system, who would see
that they were moved out in the way that was compassionate, understanding, and respectful.
So the city of Philadelphia, Kathy Sykes, asked me if I was willing to consider doing this, and she
explained to me that it had to be an independent entity which required that you set up an
organization separate from everything.
At that time I was working back at the ARC, because that’s where my home was -- my home
office was there, and I was still moving people out from Embreeville.
I had just finished moving them out and I was following them in the community, and she told us
what I needed to do, and Maureen Devaney was working with me at that time at the ARC as a
community advocate, and I asked her if she’d like to join me to do it.
And at first she said to me, you can do it, and I said no, I don’t want to do it alone, and then we
spent a lot of time -- it was halfway through the year.
Kathy Sykes came with about this much information, and said you need to fill out all of this in
order to have a contract with the city, and I wasn’t a particular business woman or understood
what it was to set up an organization from the standpoint of running and actually delivering
services.
30
I knew how to set up a parent organization, but not one that would deliver service.
So Maureen and I actually worked all the way through Christmas, writing the grant, and it was
certainly my first experience.
Maureen had a little bit of experience before me, and on New Year’s Eve at 5:00, we delivered it
to the city, and in July they called us on the phone and said, you’re going to do this.
You need to set all of this up and get started, and that became Vision for Equality.
And Maureen and I decided from the very beginning it was going to be a grassroots organization
that represented people with disabilities and families.
Having the creation of the teams was one thing, but we wanted to create what we felt ought to
exist for families in the community, that we didn’t think existed at that point.
And so, you know, it took us -- we sat on crates, and we didn’t have any furniture, and we moved
into a little building on Spring Garden Street, and initially the city said you can’t do this on your
own, so you get a 501(c)(3).
And I remember the first time that we got our contract, and it was for a couple hundred thousand
dollars, to do this, and I was like beside myself because I was -- it was so incredible to think -- I
mean, this was an awesome responsibility, to be responsible for this money, and what were we
going to do with it?
Because we still had to create everything, but we did it, and now over in existence almost 15
years.
But it’s been wonderful, because over the years, we’ve thank goodness to this city, and many
other people who have seen the worth in the work that we do, we have been able to -- many,
many families and self-advocates gravitate to us, and so most of the people that work for us are
people with disabilities or family members, and they’re always the right kind of people because
they’re supposed to be there.
I always felt -- I told Maureen years ago, even before this happened, that I thought something like
this was going to happen to us, and I couldn’t tell her why, but I just had this feeling that someday
we were going to have an organization for families and self-advocates.
And Estelle and Kathy Sykes and Larry Pace gave us an opportunity to do it, and I think it’s been
great.
07:46:16:10 – 07:47:12:08
Lisa: Dee, you’ve worked over the years, on your own and through Visions with so many families.
In your opinion, what impact does caring for a child with a disability have on family members?
Dee: I think the impact of having a child with a disability can be quite different for each family,
because I think a lot has to do with what kind of support you have in your life, what’s inside you,
what resources exist outside you, and the stressors, whether you can withstand the stressors,
and whether the family can continue to function, and whether you’re able to get the supports that
you need, in order to be able to do it the way you should be able to do it, and still maintain a
family life for everybody.
Chapter Seven: Service System and Need for Advocacy
07:53:05:00 – 07:55:43:15
Lisa:Given the current cutbacks that we’re experiencing in funding, do you think that families
might begin to see institutionalization as a viable alternative for their family members?
Dee: I am worried that with all the present cutbacks and the lack or the cutback in services in the
community, and a long waiting list that we have, especially with the older families -- we have 600
or 700 families whose moms and dads are in their 70s and 80s, and their fear that they’ll die
before they have their son and daughter settled and they’re unable to get anything in community,
which is really becoming quite evident at this point.
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The system -- the capacity the system is drawing up, in the last few years, there’s been no real
effort to build that capacity.
There’s been no people leaving institutions.
What’s happened a lot in the last -- before that -- is when we were closing some of these
institutions like Woodhaven and Embreeville, for every couple people, they were moving out of an
institution, they were able to place somebody in the community in that house with them.
So we were continuing to build capacity, but we haven’t built capacity at all in the last several
years, and as someone who plays a role in placement of folks, I can tell you there’s very little left.
There may be as little as 40 or 50 placements across the entire state, and we have thousands of
people waiting, 600 or more over 70 or 80, their moms and dad are over 70 or 80.
You know, what are the chances that this powder keg is going to blow, and where are they going
to go?
And we are in fact seeing today, people -- to me, as offensive as some people feel it is, I think it’s
a revolving door.
We move out ten or 15 people, we win a little battle, and in the back door goes four or five or six
more.
Because those beds are hot, they’re still there, and as long as those beds are there, they’re going
to be a threat for everyone else.
And what are you going to do if you’re 70 years old, or you’re 75 or 80 and you come down with
terminal cancer, and you’re gravely ill, and you need your son and daughter to go somewhere,
and there’s nowhere for them to go?
There is no choice, because you will need to place them in an institution, and that is the only
entitlement you really have.
07:55:48:00 – 07:57:40:25
Lisa: Do you find that families today are willing to fight the fight that you and your contemporaries
fought?
Dee: I think the families of today are slightly different than us, because as I said earlier, I think
they’ve had a lot of it handed to them, they didn’t have to fight for it.
I mean, we hold -- many of the families from the ‘70s and ‘80s hold what they have as precious
because they fought for it, and they knew they were hard-fought battles.
But a lot of the families, as you move into the ‘80s, especially the ‘90s and to this present century,
have not had those battles.
So they think these things are entitlement, but there are really no entitlements.
Either you can see the cuts in education; they are making a lot of cuts today in special education.
So not only is it in the adult system, but we’re seeing lots of cutbacks in the educational system
for kids with disabilities.
You know, in hard times, it’s the person with the least power and the least voice who will suffer
the most, from the disadvantaged to the elderly and people with disabilities.
So it’s very worrisome, and I think that the families -- we’re trying very hard to inspire families,
and Temple’s done a whole lot with C2P2 and trying to inspire young families to become leaders.
We need young leaders, people like Maureen and I and some of the other moms that work for us,
Pat Armstrong and just many of the other families that we know.
You know, I mean, we’re not getting any younger, and we need to have some people coming up
behind us who can pick up where we’re going to leave off, and continue the battle, because it’s
not yet won.
07:57:42:10 – 08:00:42:18
Lisa: Dee, do you think that siblings play a role in this ongoing advocacy, or should play a role?
I do think that siblings can play a major role in this, and that we haven’t even, you know, opened
that little spigot of resources.
I really do feel over all of the years, at least that I’ve been involved, which is now 46 years
because that’s how old Gina is, I’ve never seen a real effort to engage siblings or to deal with
their issues, no less see them as a part of the bigger picture, and several times, some of us have
tried to hold like little conferences about siblings, and I know across the country there has been
32
some effort, but it’s minimal in comparison to what it needs to be, and we can certainly see that
the siblings that are involved in Voice of the Retarded have been extremely powerful, and where
their family, moms and dads are leaving off, they’re picking up that gamut and moving on.
And believe me, they are in the halls of Congress every day, telling those institutions, on behalf of
their brothers and sisters, need to stay open to keep them safe.
So we would be very remiss if we don’t pick up siblings, whether it’s brothers, sisters, nieces,
nephews -- whoever willing to stay in a person’s life, and who are willing to speak up on their
behalf, if we don’t take advantage of that.
And frankly, I know that in the last year or so, some of us, including Temple, have had some little
conferences with siblings, and when they come, it’s clear that just like families felt 40 years ago,
they feel very alone, and that they’re very thirsty to know more, so that they can support their
brothers and sisters.
And I think we’d be very remiss if we don’t take advantage of that opportunity, and in fact vision is
about to undertake an effort to reach out to siblings across the state, to see if we can’t form a
group.
There are, I think, some in a couple other states.
So we want to do the same thing here, especially after hearing some of the siblings’ stories that
we heard at a recent Temple event, and how much they’re interested, and knowing more,
knowing more people like themselves, but also knowing more and getting more support.
So Vision’s going to try to at least begin that effort to reach out and get them organized, so that
they can get to know each other and get to work with each other.
Because we need to have people in the halls of Congress too, telling the Congressmen we don’t
want our brothers and sisters in institutions.
We want them in the community, we want them sometimes living with us or nearby, but they have
a right to live in community and we want them there.
08:00:43:00 – 08:04:16:29
Lisa: Dee, you mentioned Voice of the Retarded.
Can you tell us about that group of parents and/or siblings that want something different for their
child than community?
Dee: Right.
You know, I know at the local level, at the state level, we certainly have seen a fair share of that
with certainly one mom who was very pivotal in doing -- at least organizing this kind of an effort
was Polly Spare, and Dan Turinsky, all of them who had sons and daughters who either had gone
out in community and had terrible experiences, and placed their kids back in some type of
residential setting, or were in there and were under their leadership and afraid because of court
orders that they were going to get forced out.
And they’ve tried really hard.
A lot of them are growing older too, but they are smart enough to be gaining the support of their
brothers and sisters of these guys, and clearly we have different philosophical opinions, many of
us, although I honestly feel after having met 119 people, at least just from Woodhaven alone, not
even the rest that I’ve met since, that those family members care about their sons and daughters,
and they love them, and they want them to be safe.
It’s just philosophically, how we see someone live their life can be quite different, and I can tell
you, if I did something, because a lot of professionals told me to do it 50 years ago, and now
people came and told me I made all the wrong decisions, how hard it would be for me to live with
that.
And the truth is, there is an underbelly to our system when you come out.
There are plenty of things that happened to people that shouldn’t happen to them, and as
someone who has fought very hard for adult protective services in this state, I can tell you we
have to stop it, we have to make sure that it comes to an end as best we can.
People should be able to be safe in their homes, in their beds, or not fear retaliation if they
displease someone.
We don’t need institutions in the community, and we don’t need anybody to feel wherever they
are that they can’t be safe and happy.
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So I think the efforts that happened here were pretty significant, and they still hold a major voice
in talking to legislators here in this state, and after that Polly and some of these guys have done a
pretty good job of being able to get people around the country who share their philosophy to join
them.
I do think that some of the unions in the institutions have given them money and supported them
to continue what they do every day.
If we could all be in the halls of Congress every day, we could change Congressmen’s minds too,
because I don’t believe anybody has to live in an institution, it’s the only place they can be.
And believe me, I have moved people out of institutions who have significant disabilities, and I
mean have real challenging behaviors.
And you know what, most of them have fared pretty well.
It isn’t necessarily cheap, but it is a life, and I think that morally and ethically we owe it to them to
do the same for them that we would do for ourselves.
08:04:26:04 – 08:06:11:20
Lisa: Dee, I wanted to ask you again, if there are any other pieces of legislations or any acts that
are serving to help families care for their children at home.
Dee: Yes, and I think if I talk about the things that have helped families most, I have to say that I
feel that Title XIX, under the Social Security Act, it provided us with community opportunity
through waivers, both for people who have left institutions, as well as people who live at home,
have made a major change, in being able to support families, to continue their caregiving, far past
when they might have been able to without support.
I know -- just on a personal basis, it has been such a blessing for us to be able to have waiver
services for Gina.
First of all, it provides her with something to do with her life during the day, something that she
chooses to do with her life, but it also has supplied for us, on several occasions, when my
husband was very sick with cancer, for me to be able to do what I needed to do for him, while she
could continue doing what she needed to do for her.
And there’s nothing that can replace that kind of support for family members who have kids with
disabilities, whether it’s helping them get a job, or helping them to remain in their homes, and
helping them to be able to get out and do some activities, so they learn more about community
and how to be a member of community.
Those waivers have been a real blessing for anyone who’s had an opportunity to have them.
Unfortunately there’s not enough money for all the people that need them, and that’s why we still
have this long waiting list.
08:06:13:10 – 08:09:13:00
Lisa: Is the long waiting list, Dee, indicative of an institutional bias?
Dee: Yes, the long waiting list is definitely related to institutional bias.
Tomorrow, if I couldn’t take care of Gina under this same act, the Social Security Act, it allows me
to place my son or daughter in an institution tomorrow, and worry no more, to place them in
someone else’s hands to care for them.
If I were gravely ill, and I didn’t have anybody else to help me, I might be forced to do that,
because the entitlement is there.
But there’s no entitlement for someone to remain at home with their loved ones in community,
and to be supported there, and to me, that’s almost perverse.
It actually should be reversed.
The bias should be towards community.
A family should be offered first, if we can give you this in community, can you keep your son and
daughter at home, instead of, we can place your kid in an institution if you want.
Other than that, you’re entitled to nothing, unless some money happens to exist.
Families -- you know, I have the greatest respect for families.
I’ve had such wonderful opportunity.
I’ve met thousands and thousands of families with kids with disabilities.
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I respect them all, whether their kids have been in institutions or whether they’ve been at home,
but you have to say that for these families who have sacrificed for years, often at the expense
sometimes of their marriage, sometimes even hopefully not at the expense of their children, but
certainly at the expense of their life, many times, whether it’s vacations, or it’s going out for dinner,
or all those little things that you give up in order to keep someone at home, and you’ve done it
without any support.
And often it can be very difficult, especially if you have sons and daughters who don’t sleep at
night, or require a lot of physical care.
You’ve got to give those folks a lot of credit, and they’ve done it.
They could have all, one and all, placed their kids in an institution.
Imagine if every single person in this country who had a kid with a disability said I can’t do this
anymore, (inaudible) the United States of America to care for them, because there’s the
entitlement.
It would have to place them.
So I mean, to me, why do you want to spend $250,000 to place somebody in an institution when
you can let them live at home with their families, often for as little as $5,000 or $10,000 -- not to
pay the family, but to just give them a day program and maybe some additional opportunity
through the week to do something.
Why do you want to spend $250,000 to place someone when you can do the same for ten or 15
in the community?
It just doesn’t make any sense, and I bet if the taxpayers realized it, it wouldn’t make any sense to
them, either.
08:09:14:00 – 08:11:56:08
Lisa: I certainly can’t imagine losing my parent and my home maybe in the same week, maybe
almost overnight.
I don’t know if you’ve seen situations where adults with disabilities have lost their elderly parents
and have been forced to move, and the impact that might have had on them.
Dee: I have seen a number of people whose elderly mom or dad passed away, and the next day,
you know, first of all, the system is faced with what am I going to do with this person, but also just
the trauma to the person, to be pulled out of their neighborhood, their home, their church, the
people who know them, and to be placed somewhere else, where it is foreign to them, where you
live in -- I don’t care if you’re in the army, or you’re in a convent, or you’re in a state institution.
I don’t mean to compare them because they’re all quite different, but they’re all congregant kinds
of care.
It’s quite different to be in congregant care of any kind, than living in a real home, having your
own bedroom and being able to turn on the radio or the TV and to have a real life with choice.
And for you to lose all that, even if you’re in a hospital, anybody who’s ever been in the hospital
can tell you, once you go into that kind of congregant care, they tell you when to rise and sleep
and what pills you’re going to take and everything else.
So if you think about that, in terms of someone -- the trauma to the folks that this happens to is
sometime unbearable for them, and it’s also unbearable if they’re left behind with brothers and
sisters who have no resources for them, who work themselves every day, who want to help but
don’t know what to do, and they’re faced with the day after mom and dad died, Mary or Joe, and
don’t know what to do.
But the trauma to the person themselves -- I mean at least then, a person can remain, if they’re
lucky, with some resources to live near or with a family member who loves them.
Everybody wants to be loved, everybody wants to belong.
I think one of the other things that I’ve witnessed the most, too, is to spend a lot of time with
people with disabilities, whose family either deserted them or couldn’t care for them anymore, and
they spent their life living in an institution.
Tell you a wonderful story about a man that we moved out of Embreeville.
08:12:04:15 – 08:16:57:29
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in talking about what we all want in life, to be loved, to be loved, and to belong, and to feel like
we’re somebody.
I was moving somebody out of Emeryville, and when I was called in, I was called in at a time
when they were beginning to plan for this person’s moving.
The gentleman was older.
He was probably close to 75 or 80.
He certainly had his own characteristics.
He had really big ears, and his tongue used to stick out, and he came in the room first and he
looked just like any other elderly old person who might, you know, be at that time in their life, and
other people came in and started sitting around the table.
And a young woman came in.
She must have been in her 40s.
She came in with all these bags in her hand, and she sat all the bags down and started taking
everything out, and there was rice pudding in one and chocolate pudding in the other and
milkshake in the other, and she immediately started opening all of them.
And she sat right down beside him, and she started giving him some of it, and somebody said,
would you like to tell everybody here at the table your story?
And so the young woman began to proceed to tell us that her mother had died about a year ago,
and her and her sisters were going through her mothers papers.
And while they were going through the papers, they came across the name of a young man, and
they were all taken aback because it was their last name.
And so they asked -- I don’t know if it was their father or their stepfather, who was this person,
because it had their mother’s name as the mother of the person, and he said, well that was your
brother.
And they said, what happened to him?
And he said, I’m sure he’s dead by now.
He had mental retardation and he was placed in an institution, many, many years ago, and we’ve
never heard anything about him, so I presume he’s dead.
Where other sisters didn’t seem -- I mean, I think they were upset that they never knew it, but this
woman what was at the table had decided she was going to find out if he was in fact dad or was
he alive, and if so, she wanted to meet him.
And it was at a time when Emeryville was closing, and somehow she got in touch with the state,
and she found him, and she came to -- now she’s telling us this story, but all this time, she’s
feeding him this pudding and the whip -- all this certainly stuff that if I ate wouldn’t be good for me,
but he was enjoying it immensely, and a milkshake.
And she’d wipe his mouth every once in awhile, and she’d say, isn’t he wonderful, isn’t he
handsome?
You know, and if you looked at him with his ears sticking out and his tongue sticking out, it was
like, right, you know?
But she saw him as incredible, an incredible human being, and she kept saying, he’s so smart,
look how smart he is.
You know, but she kept telling the story when she wasn’t feeding him, and she went on to say
that her and her sisters came out and met him, and she became particularly interested in him,
and she got involved in his life, especially at the time now when he was moving.
All the time she’s telling this story, he laid his head on her shoulder, and I thought to myself, I
think that’s the most wonderful love story I ever heard.
Because I thought, here’s this man, he’s almost 80 years old, and no one had ever loved him,
and he had never belonged, and here he was at this time in his life, finding someone who thought
he was great.
And I thought it was just the sweetest thing that I had ever seen.
And he’s still around, and I moved -- he moved down there I’m going to say a good ten years ago,
so he must be in his late 80s now, but he lives in a great home in a community.
His sister -- one sister in particular, but his sisters all still, you know, are involved with him, and
his life has changed so much.
But to think that someone can live a lifetime and nobody love you -- not that people didn’t care
about you, but to be loved and to belong, and to be important to somebody, and for them to think
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you’re wonderful, I mean, that’s the greatest thing that can happen to any of us, and he had to
wait 80 years for it, but he got it.
Chapter Eight: Dee Reflects on Life and Work
.
08:17:09:19 – 08:18:19:17
Lisa: How would you describe yourself?
Dee: Well, I guess I’m full of passion and energy, and a desire to make a difference, but to help.
I’m sure by some I’m seen as controversial, and someone who likes to confront, I guess is the
best way to put it, but I’m certainly quite different than who I really am, but certainly this is what I
have become, and it’s hard to put a stop to me, because I feel so -- I feel so wedded to what we
do, and I feel that it has made a difference for many people’s lives, and that it’s been important,
and I thank god that I’ve been given the opportunity to do it.
08:18:21:00 – 08:21:27:02
Lisa: When did you first feel like an advocate?
Dee: Well, it certainly was -- I guess the first time I felt like an advocate is when I had to advocate
for Gina.
But there was an incident that happened, if you talk about feeling like you’re an advocate and you
actually got the result, there was a time when I was very concerned about some things that were
happening at the school that she was going at, and I decided -- and I don’t know why, because I
was like a young mom.
I really didn’t have any knowledge about how to do something like this, but I happened to just
have a letter with all the board members’ names on it, and at the time, one name that stuck out to
me was Milton Schapp, who was on the board.
He was running for governor.
So I just decided, having not had much success with the executive director of the agency that
Gina was at, to pick up the phone and figure out who was on his staff, and the gentleman called
me back, and I explained to him I was very disturbed by some things that I had seen, and he said,
you know, Milton Schapp’s running for governor, and I said exactly, and he said, well why would
he be interested in what you have to say, or why would he care about this?
And I said, well first of all, because his name’s on this list as a board member, and he said, yeah,
but he’s running for governor, so he’s not that much involved.
And I said, well, I said if enough people are angry about this, I said if he is running for governor, it
may be the 50 votes or the 500 votes or the 5,000 votes of those moms, dads, brothers, and
sisters and aunts and uncles that will keep him out.
The next day, Milton Schapp was down at that school, and took care of all the concerns that I had.
And you know, I guess I had so much success that first time around that I figured I could keep it
up.
I know I don’t always win, but -- yeah.
So I think that that drove me on to doing it.
And as I said, when I was a little girl, helping my sister one time when there was an issue on the
street, where we tried to get -- just to get a street closed from one end, so that children couldn’t
get hurt on the street anymore, and we stood out there with signs, and I must have been about 12
or 13, but we got that street sign, and so I guess without realizing it, those things were making an
impact on me, and I realized that you can speak out, and that there was power, and that people
like Leona came into my life and kept inspiring me to continue doing that kind of thing.
Because together we do have great power.
We don’t realize it as just, you know, average people that together, collectively, we have great
power.
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08:21:28:19 – 08:22:09:12
Lisa: Dee, how would you like to be remembered, do you think?
Dee: I guess that I’ve made a difference.
I just -- I always say to even the folks that work for us at Vision that none of us are important,
we’re really not.
It’s the work that we do that’s important, and that the synergy that we create, doing it together,
and I don’t think any of us need to be remembered for ourselves, because it isn’t about ourselves,
it is about what we’ve been able to accomplish together.
That’s the only thing that’s important.
08:22:11:21 – 08:25:24:10
Lisa: Do you have any regrets?
Dee: No, not many.
I think about it sometimes, about regrets, because do I have regrets?
I don’t think so.
Sometimes I look back and I think, could I have done something differently?
There are many times, I’m sure, when I examine how I did something, especially if I didn’t
succeed, if I had done it a different way, would it have made a difference?
And I think it has, it has influenced me, as I do that to sometimes learn to speak softly and carry a
big stick, rather than show the stick first and have a loud mouth.
So I think it has influenced me, because I do spend a lot -- I take very personally what I do,
especially in how it affects other people, and there’s been many times when I sat at tables,
advocating for self-advocates who had no families, and I would be banging on that table to get
what they needed.
And after, when I left, I worried that I left an awful lot of angry people behind with that person, and
did I really do them a favor?
So I think you do -- you can’t do this kind of work and take it seriously without considering
sometime the way you do it.
But all in all, with all my reputations -- good, bad, and indifferent -- I have to say, I don’t have too
many regrets, other than how I might have personally not been able to do enough.
In fact, I’ll tell you another little story.
This mom had come to me a couple times.
She was trying to move her daughter.
She had a daughter with significant disabilities.
She was a single mom, and she really was having a hard time with the agency getting her moved,
and this was, as I said, a young woman with significant disabilities.
And finally I said to her, well let’s meet together with them.
I’ll go with you, and we went, and we met with a roomful of people from the provider agency, you
know, who were banging on the table and saying why they couldn’t do what she wanted, which
seemed to me pretty simple, to move somebody who, first of all, was living in a house where
there were steps, when she really had difficulty using them, and with people who were a bit
abusive, and she was very vulnerable.
But you know, sometimes you can’t figure all that out with them, but -- and so in the end, when
we walked out of the meeting, it was dark and we walked back to the parking lot together, and
she started to cry.
And I said, oh I’m so sorry, I failed you.
I said I wasn’t able to get you what you wanted, and I said, I feel so bad.
And she said, that’s not why I’m crying.
And I said, well why are you crying?
She said, because it’s the first time somebody’s stood with me.
And you know, I mean, they’re the things sometimes that make the difference.
It’s not necessarily that we win the battle or that we get you everything you want, but that we
stood by your side, and I think that that’s what a lot of the families who work at vision do, and a lot
of the self-advocates do with each other, is if nothing else, we stand by each other’s side.
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And that’s the thing that makes the biggest difference.
08:25:26:09 – 08:27:53:11
Lisa: Dee, you’ve talked about this as a civil rights movement, this movement on behalf of people
with intellectual disabilities, and by people with intellectual disabilities.
Would you consider yourself a leader in this movement?
Dee: An insignificant one.
I really do feel I’m insignificant.
I mean, when you think of some of the people, the Gunner Dybwads and the Tom Gilhools and
the Eleanor Elkins, you know, I’m just another little, you know, clog in the wheel that makes it go
round.
Not really, I don’t consider myself to be -- I might have made a big reputation for myself, but I
don’t really consider myself to be of any real significance.
There’s so many people in this country who have fought the civil rights movement beyond my
wildest dreams.
I remember many years ago, I was trying to get Gina into the office of vocational rehabilitation
services, and the guy who was the head, I had gone to a meeting where he was at, and he was
saying how everybody could get services, and the law said that, and I stood up and I read him a
letter that said that Gina wasn’t eligible to go, because of her significant disabilities.
And he was certainly annoyed by my presence in the audience, and then I followed him to
Harrisburg, and the next time he stood up it was in a meeting with a lot of people from the state,
and I read the same letter again.
And you know, he acknowledged me when he came out of the meeting, but several months later,
he called me on the phone.
He said, you know, you’re making a reputation for yourself all over this state.
He said, you’re nothing but a little troublemaker.
And I said, really?
And he said, yeah.
And I said, well you know, I think that’s what they called Martin Luther King, Ghandi, and Jesus
Christ.
And although I’m not worthy to stand in their shadow, I just consider what you said to me a
compliment.
And I do believe that you need those people who are willing to be the troublemakers, to keep
shaking those cages, and so we’re not the status quo.
So you can’t be afraid when people, you know, confront you and tell you how awful you are
because you stand up for what you believe in, and I think that still happens every day to people in
the civil rights movement, you know, your troublemakers.
08:28:04:02 – 08:29:03:29
What are you proudest of?
Dee: I think I’m very proud of Visions, and Visions for Equality has given us an opportunity to
really let a lot of families bloom, and to watch them and self-advocates, we’ve helped a lot of the
self-advocates get on their feet, and to watch us be able to just build, you know, our little armies
that keep fighting the fight each day, is -- besides my family, of course my greatest
accomplishments are my children and my grandchildren, and I love them dearly.
But certainly having had the opportunity to help people to grow, and to be able to do this, then
build what we have built in a little bit of time, just a handful of people, you know, we’ve been able
to change the world, a little bit.
Lisa: Thank you, Dee.
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