Unforgotten: Twenty-Five Years After Willowbrook

[somber piano music]

I was thirty three years old.

I always wanted a son.

And god blessed me with a beautiful boy.

He was born, looked normal and I was so happy to have him.

I was also friendly with a general practitioner doctor friend of mine.

He looked at me and said,

“Sal, I think your son is retarded.”

I was crushed.

I didn’t know, I was numb,

I didn’t know what was going on.

I didn't know, I can't believe it.

Because I was so young, I didn’t understand

what was the matter with Patty.

She looked normal to me.

I had no idea that there was something wrong.

She kind of resembled a Raggedy Ann doll.

She was cute, she had cute eyes.

She had the cutest feet I ever saw,

and she was really like a playmate to me.

I look back now and realized that it was because

she really hadn’t developed appropriately,

but to a child that age, that didn’t matter.

Finally the doctor told me that Margret was mentally retarded,

which I didn't understand what that was.

But then after they sat down and explained it to me,

the doctor said to me: “She will live with your love,”

So what I did, I just wrapped Margret up in her blanket

and says that from this day forward, my life is hers and her life is mine.

The seizures apparently became greater in number.

It was strongly suggested and recommended

to my parents that Louis be institutionalized and put away.

If I was able to keep him home, he would have been home,

but he was so hard to handle.

I felt more or less helpless.

In the 50’s and stuff, this is where, you know,

you didn’t keep them at home.

You sent them away.

You know, the family encouraged it.

Your priest encouraged it.

The doctor told you to do it.

Finally, as soon as there was a vacancy, we got him into Willowbrook.

So I says, “Thank God.”

I was very happy that he was in Willowbrook.

I figured it was a good place him to be.

He'd be safe there and maybe
they could do something for him.

With clarity I remember that day
that Louis was taken

to Willowbrook State School.

My parents went home
and each went into a separate room

and just cried.

We had, in a manner of speaking,
sort of lost a member of our family.

Every one of these people
share a common experience,

Staten Island institution,
known as Willowbrook.

The horror stories
of Willowbrook State School

are now history,
but many of the survivors

and their families
are very much alive today.

And I asked my mother actually
if she every remembered telling me

that I had another sister
who was disabled,

or retarded and she said, "No."

"We probably never said that."

Somehow, we would make
the trips out to Willowbrook,

and I would go with the family,
and that was just somebody

that they said was my sister,
but I didn’t know her,

It was a stranger.

I was sad because Louis
was being taken away from us.

And it wasn’t as though he
was going for a trip to a hospital

with the expectation of coming back.

Louis was being taken away
from us forever.

I was sad because he was someone
that we'd grown accustomed to

and was someone that, I think,
you know, really required a lot of us.

You always saw the same people,
but nobody ever talked.

And we’d all, like,
kind of heard ourselves

and get on to a public bus;
and it was a Willowbrook bus.

It would take us to Willowbrook.

And yet, all these people
who had so much pain in common,

and so much insight
to share with each other,

never talked to each other
because of the shame.

You’d have a polite glance to
somebody else, a nod of the head,

a sympathetic kind of look,
but even as a kid,

we didn’t play with the other kids
that were there.

The parents never talked
to each other, and then visiting time was

over, and that was it,
and you brought Patty back.

That was the end of the visit,
until the next time.

The moment you walked
into the buildings,

and specifically the building
my brother was in,

a strong smell of urine would hit you.

A strong smell of feces.

You'd hear the moaning
and the sounds

of people echoing, like,
through the hallways.

It was bizarre, but you wouldn’t see
any of these people.

They were sort of hidden
away somewhere.

And you'd walk up these longs roads
to Patty’s building

and it was always very quiet.

And then the air
would be suddenly punctuated

by a scream.

There would just curl your hair
and you didn't see

where it came from,
didn't know where it went to.

The kind of moaning and screams.

And then this tremendous quiet
would overwhelm you again.

And you’d walk and you’d walk
and then finally you got to the building,

and the front of the building
I remember was very palatial looking.

Almost welcoming in a sense.

And you got inside and something
that always use to strike me,

as you walk down the path
to get to the doorway,

you'd look up and there
was always, always,

always somebody at the window
saying, “Mommy? Mommy?”

or calling for someone.

And you always saw them in silhouette.

You never knew who they were.

All those years,
you never knew who these people were.

Each family, I felt, had to do
what it had to do

for its own sake and survival.

My family chose to take a more
active involvement,

and in the process
drag us along with them.

It was a struggle.

And it was a painful struggle,
because it was as though

we had no rights.

When that individual
was put in that state institution,

simply because he's not at home
with us anymore,

doesn't mean we don't care.

Simply because he's not able
to speak,

doesn't mean he can't --
he doesn't have anything to say.

Some people may vaguely recall
the name Willowbrook

in connection with some kind
of a scandal in the early 70's

that was exposed
by the investigative reporting

of Geraldo Rivera.

But for those who lived there,
it was a day-to-day struggle

to survive.

Life at Willowbrook held no
expectations.

It was endless days of emptiness
with nothing to do

and no one to talk to.

With over 5,000 residents,
it was the largest institution

of its kind in the world.

It was called a school,
but fewer than 20% attended classes.

In 1969, because of cutbacks,
New York State

instituted a hiring freeze,
and Willowbrook lost 600 employees.

Then in 1972, the legislature cut
the mental hygiene department budget

to 600 million.

The governor then cut it to 580 million.

Willowbrook lost an additional
200 employees.

The resident to staff ratio
that should have been 4 to 1,

dropped 30 or 40 to 1.

At times there were
two or three people

to take care of 70 residents.

Residents who shared the same toilet
and contracted the same diseases.

The average feeding time allocated
for each individual,

which should have been 20-30 minuets
dropped to a horrifying 2-3 minuets.

Residents weren't capable of feeding
themselves a meal

simply because there was no one
to show them how.

Within 6 months of admission,
most residents suffered

from parasites and pneumonia.

And the incidents of hepatitis was 100%.

Emotional trauma resulting
from being left together, unattended,

was widespread.

We'd go in there once
and we found his fingers crushed.

He'd got caught them in a door.

We'd come there another time
and found his leg broken.

How did that happen?

They don't know.

Nobody knew nothing!

They were short of staff,
and they had other clients to bring in

so they gave him the time limit to eat.

Now you take a profoundly retarded
client, children,

and you want them to
eat by themselves?

They don't know how to eat.

Half the stuff was on the floor,
they'd eat it of the floor.

It was just one holy mess.

I said, "Oh God I gotta
get this kid out of here."

"But where am I gonna go with him?"

My mom would immediately start to,
upon Louis's arrival

examine his body, for marks, for signs.

That was her way of finding out
how Louis was being cared for.

I, being the oldest,
was sorta always thrown

in the forefront and expected
to ask all the questions.

I remember questioning a doctor
one time in the state school.

Here I was, this 13-year-old
Puerto Rican kid asking this,

I don't know how old, white
doctor about my brother,

and how and why he could be slapped
or abused like that.

Basically the doctor looked down
toward me and told me to shut up.

He told me to shut up.

I had to cut her hair
because at Willowbrook

they didn't take care of my child's hair
so it was matted.

It was all stuck together,
so I had to clip her hair off

in order for them to keep it clean.

Also, her toes and fingers was
stuck together

from not being oiled,
and she accumulated a certain type

of odor within her body,

and I think that come from her neck,
like not being bathed all that often,

and not being clean.

They brought Patty to Willowbrook and
they couldn't visit for another 6 months,

because that was good,
in those days it was felt that was okay

because you had to get separation.

And my mother said
when she went back

it was the worst day of her life.

That she went back and saw
her baby, you know,

you think.......

[crying]

of how hard it must be
for a parent to give up their babies

and say "now somebody else has to
take care of them."

And the day, they walk away.

And they have to get over that,
their child.

It's so sad.

When I visited the state institution
for the mentally retarded,

and I think at particularly Willowbrook,
we have a situation that borders

on a state path.

It's been more than 6 years
since Robert Kennedy walked out of

one of the wards here at Willowbrook
and told newsmen of the horror

he'd seen inside.

He pleaded then for an overhaul
of a system

that allowed retarded children
to live in a snake pit.

But that was way back in 1965
and somehow we'd all forgotten.

For me Willowbrook really was
a watershed

in terms of emotional catharsis.

It was, you know, I was
a very experienced local reporter

by the time I went to Willowbrook.

I had seen people dead by gunshots
and dead by fire and dead by a riot

and all the other urban mayhem.

So in that sense I thought I had
experienced the depths

of the human experience.

Willowbrook, though, was
so much worse

than anything I had seen.

A friend of mine, Dr. Michael
Wilkins, called me

and said he was quitting Willowbrook
because the conditions were so abysmal

that he could no longer tolerate
no longer in good conscious stay there.

And that children were being abused
behind walls of the wards there.

I said that's interesting, Mike,
but there are laws protecting the privacy

of the people in those institutions
and they're locked.

He said well the laws are preventing
people from seeing a horror

and I can get you a key.

When I stepped into that ward
and threw open that door

with my stolen key,
it was the defining moment in my life.

You know, I can't think of that 25 years
later without remembering it.

In a way that.....

I said at the time
a quarter of a century ago

I said this is what it looked like.

This is what it it sounded like
but how can I tell you

about the way it smelled?

It smelled of filth it smelled of disease,
it smelled of death.

You can't treat humans
like dogs in a kennel.

There is no place where you mass produce
care, compassion, concern for people.

It is impossible.

It is fundamentally unsound.

The assembly line works for cars,
it does not work for people.

People need humanity.

They need spirit of compassion.

They need to be loved.

They need to be able to fulfill
the potential whatever their potential is,

however limited or infinite their
potential might be, they need an option.

They need the opportunity
to realize human potential.

How long have you been at Willowbrook?

18 years.

How long were you given
physical therapy and school?

5 years.

Are you still going to school?

No.

Why?

I'm overage.

You're too old?

Yes.

Would you like to go back to school?

Yes I do.

What would you want to learn
if you went back to school?

Work on my reading more.

Learn how to read?

Yes.

How is it living on the ward that you live?

Disgrace.

Some of the residents at Willowbrook
weren't even supposed to be there.

At the age of 3,
Bernard was misdiagnosed

as being mentally retarded
and was placed at Willowbrook.

He remained there for 18 years
before it was discovered

that he, in fact,
suffered from cerebral palsy.

He was physically,
not mentally, handicapped.

It's hard to express myself at that time
because I was never [inaudible]

[inaudible] yourself

You're bright. [inaudible]

You're very intelligent.

And it was frustrating
because it was like they didn't help.

There's no privacy.

It was like a concentration camp.

I got beaten so many times.

I got beaten with sticks, keychains, keys.

They kicked my head through the wall,

You name it, I had it.

I always thought I was gonna
die in the institution

because none of my family
came to see me that often.

They came about every 5 to 10 years.

The saddest thing is on Sundays

when parents will come visit their kids,

I would look out the window

to see who will come to see me.

When the clock struck 3 o'clock
in the afternoon,

it was disappointing

because no one came to visit me

or brought me cookies, ice cream,
or toys and stuff like that.

Many people assume
that the human stories from Willowbrook

ended when the institution was forced

to close its doors.

In fact, that was only the beginning.

It's a very hard type of thing

to have somebody

who's developmentally disabled

in your family.

I know when I was younger

I knew Patty looked different

I didn't really think too much about it.

I couldn't figure out --

I couldn't quite put my finger on
what it was.

And I remember one day
being in the butcher's in the neighborhood

and I looked up and on the counter
of the butcher shop,

was this canister.

And on the canister was a picture
of a child.

And it said, "Donations for Mongoloids."

And I remember looking up and saying,

"Oh, gee ma....They look just like Patty."

And my mother was rather startled,
and kind of tried to shush me up.

And it dawned on me,
"Well, gee, how can that be?"

That there are other people
that look like Patty.

And why doesn't Patty --

Patty looks like us,
but she doesn't "truly" look like us.

And I guess that was the first time
that I had a name

to this terrible thing
that removed Patty from the family.

You give birth to a child
that doesn't meet society's standard.

Already, that places a burden
on the parent.

To be the sibling, I represent maybe
society's answer to the standard

becomes kind of a burden also.

You know, why -- Why is it Patty?

Thank god, it's not me.

Should I be doing something else?

Do I have an accountability here?

Should there be something else I'm doing?

You know, when can you put
that type of burden down?

- I tried not to think about it.

But....It was always hard, you know.

I never wanted to leave her behind.

I always wanted to take her home with us.

I was so frightened
that there was something wrong with Patty

and she got put away.

You know. so what happens to me?

You know...

And as a kid having these great fears
about doing something bad

and being put away.

Um...and not being able to understand
the experience as a child.

When we were being raised
that a lot of times

we were in school our mother
would make that trip herself

on Wednesdays at Willowbrook
without telling anyone

And the doorway would open just a crack --

just a crack

And our sister Patty would burst out.

Barrel right into my mother
with a big hug and stuff.

And that was it.

- She was really strong and it must have taken

a really strong person to leave a child in a place like that.

She took it a lot better than my father was able to handle it.

- We never got to discuss that.

We never talked about it, it's just something we knew.

That it was hard for our father to talk about it,

to spend his time with Patty.

-Most men feel a child who is not quote on quote normal

is a reflection, I think, on their ability as a man

and, I mean, even though we know it is not true, but it was hard for him to accept.

You know, he loved her dearly.

And she meant everything to him. And vice versa.

Everything was always daddy.

She'd come home and she'd visit and he'd be sitting in his favorite chair

all the time, and he always had a flat top crew cut.

And every time she'd come over to him at the chair and (inaudiabe) right?

To daddy?

-To daddy's hair?

-All the time. That was always the way she expressed her affection to him.

She was really attached to him.

- I think one of the most profound things I saw was when my father died.

And we had discussed as a family, what were we going to do with Patty.

Patty always had the unique ability to know when somebody had died in our family.

And that was always very startling to us.

And we met as a family to decide what are we going to do with Patty.

Because Patty should certainly be informed, Patty is part of the family.

And Patty needs to know but how will Patty react to this?

We made arrangements with the group home to bring Patty over to the funereal home.

My mother was very nervous about it.

And I got to admit, most of us were pretty nervous.

And Patty came in, with I think, two of the workers from the group home.

And everybody started to cry.

And Patty looked around and she knew something was terribly wrong.

But she didn't quite know what.

And I grabbed Patty by the hand and I took her up to the casket.

And Patty, and all of her profound retardation, looked down at my father and said, dead.

And I said yeah, daddy's dead.

-We cry about the lost times that Patty wasn't able to share with daddy

because she didn't live at home.

And the simple joy's that Patty got just having my father tease her and stuff

made Patty's life so full.

To Patty, my father was God.

He was the one that she focused her most attention on.

It often made him uncomfortable.

Umm, it was just very hard.

-Who's that?

-Daddy.

-Patty was an adorable child.

Patty as she grew older was no longer adorable except maybe in the eyes of her family.

-She's just love. You know, just pure innocent love.

Maybe in a funny shaped box, right, but it's love.

When I was first married, they came up once to visit.

And they brought Patty for the trip up.

And we, Katie, Uner, and Patty and my mother, we went to a apple orchard.

And I was really not that exposed to others than Patty.

And when we went up there, Patty was going around the store,

and she was touching things and making all kinds of sounds and stuff,

and I was trying to tell her not to touch, this and that,

and she was getting angry at me.

So she started to talk quite loudly and to carry on.

And I got so embarrassed by her behavior that I couldn't stay with her.

I felt like everybody was watching me, and everybody was staring

So I knew Katie and Uner were right there by, so I walked away from her.

-It's alright.

-Cause I was embarrassed. But now from working with them,

I would never walk away.

I've learned that I shouldn't worry what other people think.

You're my sister right? Thank you.

Or my mother right? I love you, right?

(soft music plays)

Louis has kept the family together,

because Lord knows I didn't want to be as involved as I am with a disabled brother.

I didn't want to find myself arguing with doctors and nurses

and physical therapists and occupational therapists and speech therapists.

It's been a struggle for me. Even to this day,

with having to sort of undo and deal with at the same time.

The 20 or so years of the physiological and emotional distress that my Mom has gone through,

that my family has gone through, that I've gone through, that Louis obviously gone through.

It's been good for my mom, because she has kept her sons around.

You know, it's been difficult because I've had to make a lot of sacrifices.

He feels pain and happiness just like everybody else.

I'd say its by miracle of got that he's still with us.

But also, also, I'd like to think a little of that credit is also because of the involvement of family.

I have yet to form a family of my own. Hopefully someday I will.

But I'll tell ya, time is running by.

Not that I'm using Louis as an excuse, but there's a lot that's required,

in caring for my disabled brother. It becomes a 24 hour responsibility.

365 days a year. I rely on my mom.

Because my Mom is able to have that extra sense of a mother.

In knowing when something is wrong with Louis. I don't have that sense.

You see Louis will laugh. Because Louis is well aware of what his brothers can do for him,

or what his family members can do for him, and what his mother can do.

I tip my hat to Louis, because Louis has adapted to his surroundings and has adapted to his limitations,

and in place of those things, Louis has developed a smile to hopefully warm you over,

if your're a stranger. And in place of his limitations,

Louis has developed his sounds.

The gleam in his eye, the worried look that he puts when something is not to his liking.

Louis is manipulative. Louis is very manipulative.

As soon as he sees his Mom come in, he'll start giving directives.

And Mom will accommodate. Mom will accommodate.

Sometimes so, that I have to tell Mom, Mom, Louis is manipulating you.

Manipulating us, we have to keep an eye on that, because at times I get the sense that

there may be no satisfying Loui. Louis may just get a kick out of being manipulative and seeing

the cause and effects of his actions.

So in some ways, that's his way of controlling the environment.

He's also had a certain, I guess, fresh side to him.

Umm, he obviously knew, is aware and attracted to the opposite sex.

So he would kick his way over next to the woman, or the lady visiting my Mom.

And gradually, his hand would work its way up the dress.

What you want next? Feeding? Hat? Shoes? What next?

Woman? You want a woman? Woman over there? Come on.

You see?

I would visit Louis on Sunday's.

Louis was kicking and Louis was you know, ahhhhh.

You know he was going off and he was expressing, his way of expressing happiness.

Louis was kicking and he was excited about his visits. His visitors.

Um, and I was happy to see the reaction I was getting from my brother.

He was glad to see me. I grabbed Louis from the attendant and I wheeled him around the corner.

And as we rounded the corner, Louis' happiness and actual excitement suddenly died.

Louis become very somber and quiet. It suddenly hit me.

Louis was hoping to see his Mom and not me.

You know it's like, you bum. I came out here to visit you and this is the greeting I get?

Simply because Mom isn't around?

At the same time struggling with the guilt about, it's not his fault that he is responding the way he is.

It's not his fault. Umm. It's a result of his limitations.

It's a result of being removed from his Mom, from his Dad.

And only seeing them for three hours every seventh day.

You know, there have been moments when I've felt jealous.

I've felt angry. And I've tried in certain ways to express that to my mom because I think it's something she doesn't realize.

Takes for granted. I think she expects for us to understand.

And so with that expectation, it's a non-issue as far as she's concerned.

She assumes that we all understand.

But I think at times I try to point out to my mom that, yes, Louis does require a lot from all of us,

but it should not necessarily mean that we should neglect or ignore the fact that we all,

as her children, require also, some attention as well.

And we are all, in certain ways, a little selfish side to all of us.

But I think all of us, Jimmy, my sister, myself, put things in perspective.

Because the bottom line is we have the ability to express ourselves, and advocate for ourselves,

where as Louis doesn't.

From that, we draw understanding, hopefully.

You know, I love my, all my sons. But I notice, I put as best here for him because it's different.

He can't walk, he can't talk, he can't eat.

(speaks in Spanish)

She says she feels a special love with him with a certain degree of pity.

I remember also when I put him in Willowbrook, you know.. (speaks Spanish)

When he was in Willowbrook he..

Yes, that's what happened. My other kid, all the time, with me.

And he passed to much, I love all my kids.

I don't want nobody jealous because he passed to much when he this small.

I remember he's with me, he lived with me for a year.

I remember my son in my big apartment walking in the.... chair?

Walker.

Walker. And walk all this, and very very...

Active.

Active. And when I put my son in Willbrook, for what? For die.

So that's what happened. I put special attention. Somebody killed my son.

Because he can't eat fast. My son cannot eat fast. He had the feeding tube.

Why? Because he cannot eat fast. And that's what happened. I come everyday here.

Because I don't trust nobody now. Because I passed to much. So he's my son,

but I love all my son's. But that's what happened with me.

The last 25 years have brought a lot of changes.

Many institutions such as Willowbrook have, through public pressure, litigation, and government reform, been phased out.

In favor of home care, group homes, alternative forms of education, and social integration.

Here we are. Want me to put blush on?

Yeah.

Alright. You face me. Turn around. Turn around.

Ahh!

20 years younger. Alright now.

I don't think there is enough words to really express the fact that Patty finally has a life.

And doing real well. Having a boyfriend, getting into the normal fights that people get into,

having the last word, which she always had, even in Willowbrook.

But having normal relationships, and that's really terrific.

To be around other people and have a quality of life.

In Willowbrook, Patty could have nothing. She had no wall to put anything up on.

There was no bureau, there were no closets for her.

But now, this is a big step. The fact that she has pictures up on her wall,

and a picture of the family up here, and she has her stuffed animals and her trophies there.

It's really now her home.

Home.

Right Patty?

Yeah.

She keeps it so neatly too. Right?

Patty Anne keeps her own room. She keeps it nice and and neat right?

The bed.

Do you make your own bed?

Yeah.

Yeah?

And you help with the dishwasher?

Yeah.

You help the secretary downstairs?

Yeah? What are you going to show us?

Ah. Back to answering the phones.

Well that was the other thing. In Willowbrook Patty could never make a phone call home.

There were no phones. The residents were never aloud to make phone calls home.

And now, she can use the phone anytime she'd like. And call whoever she'd like.

And God knows whose she's calling.

Right?

Now it's, it's good. In...

Comparison.

In comparison with the other place. Sometimes I have my problem.

But it's much better. Sure

Here, Louis is dealt with as an individual, as a person.

Here, Louis is cared for. The family plays a very active role.

We are no longer isolated, removed, we are not just kind of simply looked at as visitors.

Let's go.

(family laughs)

(music playing)

Eventually, Bernard was released from Willowbrook.

Subsequently, he was appointed to a consumer advisory board

whose job it was to monitor the problems and improvements at institutions like Willowbrook.

I could have a real good education. I could have been a lawyer today.

I've always wanted to be a civil rights attorney.

(inaudible) I will not be a good contribute to our society.

And no, I got to go on with life.

Left behind me. It gets a lot better from here.

-Now after all that you've gone though, do you think you deserve the best?

You're damn right I deserve the best. Yes. I earned it.

We all do. Not only me, everybody. Everybody deserves the best.

(Cheering)

Undoubtedly, the public consciousness has been raised over the past several decades.

The special Olympics with representatives from over 70 countries around the world.

It's a testament. A powerful demonstration of renewed priorities.

Anyone, anyone who has life endeavor, is a human being with all sorts of potential.

Willowbrook taught me that first they are human beings, and then disabled.

(music)

We'll have people who are disabled all the time, and somebody will come up with a bright idea,

that maybe it's good if we put a lot of people together.

And may just a lot of folks who are disabled, together in one place.

And that will save a lot of money. And the circle will have began again.

Of a place called Willowbrook. And I see it as a personal mission to make sure that that doesn't happen.

People with disabilities in general, are no different than you and I.

They just need a little more attention.

Everybody's not the same. Everybody's different.

Uh, people at the house is entitled to different treatments. Different types of food.

Different way of dressing. Different ways of approaching the individual.

My focus as always been, treat the people like they are individuals.

Patty is just like the rest of us.

She may look different, but she has the same needs, the same rights,

the same wants as everybody here.

And that's an important lesson for all of us to learn. Patty's no different.

Many people say, no you can't put that group home here.

Not in my back yard.

We have to make sure that as community members that we accept group homes in our neighborhoods.

And keep them part of the community. As opposed to, when Patty was born, keeping them away from the community.

Every time that we want to open up one of these group homes in their community,

people shy away from them like they got, like they have, Lord knows what they have.

And we don't want them here, we don't want them here.

They don't know that it could happen to their kids too.

Or their grandchildren.

And I want to have some compassion. Because so far, those people haven't hurt anybody.

I never heard of a retarded person rape anybody, hurt anybody, if not they are those ones that are the victims.

The integration of the developmentally disabled into mainstream society,

I think that is the triumph of the Willowbrook saga.

Here we are 25 years later. And that which was not possible, not even thought of,

is now very much possible.

I think the future holds a lot of promise.

But there is still a lot that we have to go through, there's still a lot of resentment,

opposition, lack of understanding, and turn lack of acceptance.

Willowbrook was much more than an institution.

It was an attitude. An attitude of disrespect to people with handicapping conditions.

And that could very easily happen again if any of us turn our back on these folks.

If you put people in an artificial environment, they will not evolve in a normal way.

It is so basic, that I can't imagine how all those schools of psychiatry, all those schools of psychology,

all those medical schools. How they missed the point. These many many decades.

It is shocking to me that the average Joe or Jane in the street knew more about what was right

for the developmentally disabled than all the experts on the planet.

I just wish the public could see my son.

We never want to see this happen again.

And I hope for the future that they never be forgotten.

People like Margret was entitled to live.

That was my main thing. She had to live. I felt that she had to live before she died.

And enjoy life before she died. She's brought me more joy than I think I brought to her.

And I wouldn't let anyone separate me and my child.

Louis has gone a long way, and will go a long way.

I don't think I want to be around when he's not around. Let's put it that way.

He does mean a lot to all of us.

My future is bright.

I'm working for not much best for my self.

I mean I'm 46 years old for God's sake. Just beginning.

I think that the indignities that the families, and Patty, the people who lived there, and the staff

who worked there suffered. It should have never of happened.

Absolutely. And it was worse, I really believe it was worse than death.

Because when somebody dies you can mourn their passing and move on.

But Willowbrook was, and is for many people, a perpetual mourning.

The mourning never stops for the missed opportunities that the families had being together.

Of families broken up, parents not talking about it.

Often during the visits that we had a Willowbrook, we would have this man sitting with us.

A religious gentleman, Jewish. Wore a hat.

Had led locks, he was the gentlest man I ever knew.

And I did't really think too much about it.

Years later after Willowbrook closed, I reminded my mother of this gentleman.

And she told me the saddest story that I had ever heard.

Which was that this gentleman, when his son was born, it was apparent that he had Down Syndrome.

And he told his wife that the child had died.

To his family that child was dead. And he was the only living person that knew his son existed.

And he would walk from someplace in Brooklyn to the ferry, take the ferry over to Staten Island.

Visit with this child for maybe an hour, and go back home.

I often think about that man because he always seemed old to me then,

and I guess at this point he probably is dead.

And his son is nobody's child at this point.

Louie gets the greatest pleasure from a bird flying in air.

The breeze hitting his skin. The honking of the cars as they drive by and he sees them go by.

So I've gotten a better appreciation of the senses and how important human contact is to Louis.

How important a tone of voice is to someone like Louis.

The pressure of a touch.

Because you see these are all of the things that my brother would, in his way, figure out from a person.

Because it was that person who his life was dependent upon.

The legacy of Willowbrook will live on.

But for the survivors and their families, the continuing struggle and persistent courage

needed to live day by day is never forgotten.

Patty, Louis

And thousands of others are not our burdens.

They represent the best part of ourselves.

The part of us that instinctively knows the importance of shared responsibility.

And a part of us that needs to learn from those that can truly teach us

about the miracle of living.

(music plays)