Visionary Voices
Introduction
(music)
Once Gina was born, our whole
life situation changed.
Laurie was born with
Down syndrome.
My in-laws kept saying to me
nobody was ever born like this
in our family.
This is the end, you don't have
to go to any other doctors,
he's not going to be any
better than he is now.
People thought that if I touched
you, they would automatically
get it, it's like a disease.
The minister said that
he wouldn't baptize
a mongoloid idiot.
(music)
Laurie was in our backyard playing on the swing with her
doll, a group of neighborhood boys, little boys, came around
and they started to call out
her name, "Laurie, Laurie,
come here, come here retard, come here."
And then one little boy picked
up a rock and threw it at her,
and then the other little boys
started to pick up rocks
and hurl them over
the fence at her.
And one of the rocks hit Laurie
right in the middle of
her forehead and knocked
her down to the ground.
And she just lay there, didn't
move, and she was bleeding.
My mother just picked her up and
carried her from house to house
crying, "Look what your
son did to my baby!"
I think that's when my parents
seriously started to look at
placement for Laurie because they didn't feel that there was
any place safe for her at home.
When we had Gina, she was unable
to go into school and the only
way that you could get services
in the city, we were told,
was if you went and registered them to go to Pennhurst.
After great reluctance, I did
go and have all the required
assessments done and everything.
And of course at the end, they
told us we should place here
in Pennhurst, and I said 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 that you want,
but she's not going
to Pennhurst."
It's not like I knew this place,
it's just something that was
in my head that this is not
someplace she was going to go.
MAN: The horrible and almost inhumane conditions that prevail
at Pennhurst are not the fault of a handful of dedicated
doctors, administrators,
and attendants employed there.
No, the children, as they are all called, who are rotting
in their cages, cribs and beds,
can thank society
for their dreadful plight.
The sounds in Pennhurst were
sounds of pain...neglect...
they would just moan...
they would just cry,
they would just be
banging their heads.
I mean, some people did it
out of frustration, you know?
I want a feeling,
so I'll bang my head;
they had to wear helmets
all day long.
It was incredible, and what's
even more incredible
when you met people who
were slightly retarded,
or not retarded at all, it was
a dumping ground for anybody,
and you wondered why
they were there,
and how they in their own minds went downhill instead of uphill.
That was horrible,
that was horrible to see.
Bill Baldini's work exposed
Pennhurst, now he was a reporter
from Philadelphia, he could have
gone to the Western Center,
he could have gone to Polk Center, and he could have gone
to other places and seen
equally horrible things.
He happened to go to Pennhurst,
and I think he did a real
service for the state
by doing that.
And he happened to have the guts to knock on the lieutenant
governor's door, and say, "Lieutenant Governor,
this is going on in your state."
I was a rebel; I was saying
we got to make changes
my whole thought being,
my child hasn't got
any education available to him.
I want to see if that can happen; my child isn't going
to end up in Pennhurst, because
I'm not going to let it happen.
WOMAN: When Dennis Haggerty
got us excited at our national
convention and Gunner Dybwad
got us excited, and we decided
we really had to do more
than we were doing.
We knew we had to have help,
and we got Dennis
to find us a lawyer.
I knew of Tom Gilhool, and
I knew he was one of these
upstarts from Yale,
I think he was from Yale.
When I went to his office and
had quite a meeting with him,
and explaining
what our cause was.
But he seemed to be
up on our cause
before I even
introduced it to him.
I said, "Thomas, if you agree
to take this case, I would like
to take you to Harrisburg and
introduce you to the board
of directors of PARC,
Pennsylvania's Association
for Retarded Citizens.
And I said, "But do
I have to teach you now
about retardation?"
And when he said to me,
"No, my brother's retarded,"
I could have fallen off
the chair, I was so amazed.
Everyone in the room at the ARC
had had the experience
of being unwelcome in schools.
Families with children with
disabilities found little
solace in the few services that
they gathered, they depended
upon the State Department
of Education, and the School
District, and upon the State
Department of Public Welfare,
and its instrumentalities
And it was very hard for them
to imagine that any good
could come out of suing
the very people upon
whom they depended for services.
ELEANOR: Tom had three choices for us and one of them was to
go for the right of education,
and do it on Brown
because we could win.
And we at first said education,
we're trying to get people out
of the institution, and he said,
that's the first place to try,
and he was right.
Parents from different places
around the county,
we met in each other's homes.
We used to laugh about
peanut butter sandwiches
in the kitchen...
'cause it was very informal,
and nobody tried to put on
a big spread, we wanted to talk.
I remember one mother had
a very difficult child at home;
we we're trying to convince
her to send her kid to camp.
And she was afraid to
let her leave the house.
And I said, "What do you need?"
And she said, "I need help...
I just feel like screaming help!
'Cause that's what I need,
help."
That was one of the best
vocalizations I've ever heard
from a mother, and that's
exactly what she did need...
please, you know, help me.
Community help me, do something,
don't just leave me alone.
The class that Peter was to
join was in the basement of
the building, which should
have been a clue for me
from the beginning,
and I entered the room
and the room had
the furnace in it.
Also, the windows to the room
were way up high, and because
it was raining, they were
sort of dripping...
and the children were there and
they were making potholders.
The whole environment said
low expectations,
these children, we do not
expect much from them,
and we're not going to
give them very much.
I stormed up the stairs and
stormed into the Principal's
office, and announced that I was
probably going to be one of his
new parents, and that
I found that classroom
totally inaccessible.
And he said words that
are burned in my heart...
He said, "They don't care."
"They don't care."
And that was the beginning...
one of the beginnings of
my transformation from
being a concerned mother
to being an activist.
They don't care -of course they do!
And of course that means
we have to care triple.
DEE: This mom had come to me a couple of times, she was trying
to move her daughter, she had
a daughter with significant
disabilities, living in a house where there were steps,
when she had really had
difficulty using them,
and with people who
were a bit abusive,
and she was very vulnerable.
And she really was having
a hard time with the agency
getting her moved.
And finally I said to her,
"Well, let's meet together
with them together,
I'll go with you."
We went and met with a room full
of people from the provider
agency, you know, who were
banging on the table
saying why they couldn't
do what she wanted,
which seemed to me
was pretty simple.
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 wasn't able
to get you what you wanted,
and 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 stood with me."
And you know, those are
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.
Richard Young took me
to the first
Speaking for Ourselves meeting.
I was very scared, I didn't
know anybody, of course.
Roland Johnson was the President
then, he somehow figured out
how to make me feel
welcomed and involved.
And when I started to learn how
to speak up, what I had to say,
he was very impressed by it.
Of course Roland was in Pennhurst, and his main message
is to free our people,
and the one that sticks
to everybody's mind is
who's in charge?
That was a big shift,
back in those days,
'cause we didn't have the
power, 'cause everything
was controlled, was either
run by the agency...
where they didn't
have no say-so.
People didn't know how to
make decision, simple ones...
they didn't know they could.
Because what we heard was
if I make this decision that
I wanted to do this, then
I'm going to get in trouble.
They were all afraid to say,
speak up and say,
I don't want cereal,
I want pancakes.
How do you teach somebody
that never was taught
to make decisions on the basics?
They kept asking us,
"Can we go ahead and..."
And we kept saying,
"Go ahead."
"I'm going to get in trouble
if I take this apple."
I said, "No, you're not,
you're with us."
And we also had to educate
the professionals, even though
the county, Philadelphia County was in back of us,
we still needed to educate them.
Because they were in the mind set of people, wow, this was
a big shift, and they didn't
even know how to handle it.
Everyday Lives was the
foundation for everything.
In '87 when I came to state
government with Steve Eidelman
in the lead, we said, well,
let's make a plan about
what we should be
doing in the future.
I think we spent two years
doing that...painful.
But it was watershed.
So we asked the question,
what do people want?
It was a simple question,
what do people want?
And because self-advocates were
listened to, we heard things
like, I don't want to take
medication that I don't want.
I don't want to live
with people who hit me.
I don't want people
to make fun of me.
The wants were
really devastating,
really devastating,
and it sobered everybody up.
And then we spent a day saying,
the question that Guy Caruso
and Jerry Provencal asked is,
"If everything could be
the way you'd want it to be,
what would it look like?"
And they had this big
paper on the wall
and drew pictures of everything.
And it was pictures of going
to school, and you know, getting
married if you wanted to get
married, and having a job, and
going to the parks, and voting,
and all that kind of stuff.
And one of the dads who was from the ARC, whose daughter lived
in an institution, and over his
dead body was she ever going
to leave that institution,
he looked at the wall and said,
"Oh my God! That's just
the life the rest of us have."
And that's how
"Everyday Lives" got named;
it's just a life
like everybody else.
I think the thing I remember
most fondly was when Larry Pace
and Nancy Thaler came into
my office and they showed me
the draft copy of
"Everyday Lives,"
full color, you know,
mocked up, ready to go.
And I thought,
"Wow, this is real."
And the governor's office had
signed off on it, and to me that
was the most amazing thing
that you could get something
like this, some vision
out of government, I mean,
this was a government document, it said, Robert P. Casey,
Governor, Commonwealth of
Pennsylvania, on the document.
So that was a pretty proud
moment, it was like ok, we can
now take these ideas and start
to put them into action
and use them as the basis
for going forward.
DEE: I was trying to get Gina into the office of Vocational
Rehabilitation Services, and
the guy who was the head,
he was saying how everybody could get services
and the law said that.
And I stood up and read him
a letter that said 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.
Several months later, he called me on the phone and 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,
Gandhi, and Jesus Christ,
and although I'm not worthy
to stand in their shadow,
I just consider what you
said to me a compliment."
You can't be afraid when people
confront you and tell you how
awful you are because you stand
up for what you believe in.
DEBBIE: Everybody in Pennsylvania and the National
know what Roland, Mark, Justin, stood for -- justice for all.
We are all in this together,
and that's what I keep
telling people, we are
all in this together,
we cannot do this alone.
I like her,
she's my sister.
That's right,
we're sisters.
Don't be shy, ok?
I won't.
Because we want to
hear your story,
we want to know
about you, ok?
And so do other people,
'cause you have a good story.
Yeah.
Yeah.
You're my big sister.
Yeah.
Do you help me?
Do you take care of me?
Yeah, we take
care of each other.
Yeah.