[no audio] [gentle music] [gentle music continues] [gentle music continues] [gentle music ends] - I visited the state institutions for the mentally retarded.

And I think particularly at Willowbrook, that we have a situation that borders on a snake pit, and that the children live in filth.

I think all of us are at fault and I think it's just long overdue that something be done about it.

- How long have you been at Willowbrook?

- How is it living on the ward that you live?

- The attendants are trying their best, but the staff is just too small to do anything more than just try and keep the place clean.

When there's only one person to take care of 30 or 40, nothing good can possibly happen.

No rehabilitation, no training, nothing.

The attendants are as much the victim of the conditions here as the patients are.

[gentle music] [Geraldo sighs] - My problem with telling this story 50 years later is that I'm like Pavlov's dog.

I react and I get flashed back to that, to the obscene-- - -the torture of the, of the residents, the inmates there.

There was something so, so utterly terrible that it was almost unbelievable.

- This was a secret enclave.

The system had set up a way that would not allow any ordinary people to see what was going on inside these brick buildings.

- I was given this key on that first day of work, pretty heavy steel key, which you can see.

I was told to go to a certain building and I went there and I opened one door, it was a very heavy metal door, turned the key, opened it, and I walked a couple of steps and I had to open a second door.

I was directed down to the end of the hall.

There was another steel door.

Nineteen years of age, I basically said to myself, "Hmm.

What have I gotten myself into?

Who is locked behind three steel doors?"

Pushed the door open, and when I walked in, on the other side of the door were 40 toddlers.

And why in God's name were they locked behind three steel doors?

- When I applied for my job, I was really never taken to any of the wards.

They just accepted my application and they told me when I would start.

And then I went to Building 6, which was my building, and the building supervisor opened the door to the day room and there was the chaos.

- You have no idea what was inside.

No idea!

The savagery, the squalor, the-- - -the illness, the infectiousness, the violence.

That was just the norm every day.

- It had a stink to it that got into your clothes and into your skin.

How, how unattended-- - -it was hell on earth.

- Why would you continue to allow people to share bathrooms with no doors on the stalls when you know 100% of them get hepatitis within six months of entering?

And when the incidence of intestinal parasites and worms was incredibly high?

- Mind you, this is only 50 years ago.

We're not talking about the Dark Ages.

We are still responsible.

We're not talking about great-grandparents and, you know, ancient history.

This is our world.

Our universe.

This happened in our universe, on our watch.

It's mind-blowing.

- Well, Willowbrook has a long history, obviously, on this site.

It actually was first chartered 75 years ago.

And in the charter it was described as a school for the education of what they then termed "mental defectives."

What we now would say probably would be people with intellectual or developmental disabilities.

So it started out with this goal of educating and training people.

And much of the coverage that you might see in the newspapers then was designed to encourage people to see this as a good option for their children.

But very quickly, through underfunding and understaffing, it became really quite unlivable.

At its height, it had about three times as many people living in its wards as the place was designed to accommodate.

- I would get calls, for example, at the beginning that say to me, "Somebody is acting out.

You need to sign a straitjacket order or you need to sign a Thorazine shot to cool them down."

And I didn't understand what was going on here at first-- - -really, it took me a year to really see and figure out the evil, you know, the relentless cruelty that was built into this system to maintain the status quo.

- Lack of privacy, and that many of the people were at that time, because of the budget cuts, there weren't enough changes of clothing to go around.

So there was nudity, chaos.

- Nobody, nobody came into these buildings Not the director of this place, nobody came into those buildings.

They were sealed off.

You know--as, as coffins.

They were living coffins for devalued people.

[somber music] - I am the younger sister of a previous resident of Willowbrook who lived here for ten years before he died in 1968.

He actually became a bit of a family secret.

I was told that I didn't visit because I didn't want to go, at the age of three.

I believe my mother never went because it was too painful.

Doctors, social workers, and the belief at that time was in a situation like this, your best bet is to drop your child off and they will get cared for and to move on with your life.

And that is what my parents tried to do.

My mother never, ever forgave herself.

Ever.

- When you worked here, if you continued to work here, you started to have, you had to become a little bit impervious.

You had to be able to deal with this.

I always say that we became a little bit institutionalized because this was such a surreal thing.

But if I left, who was going to come?

I mean, I felt I could do something.

Maybe I could change what was happening on a daily basis.

- My brother died on July 4th, 1968.

I was always under the impression that his death was due to some type of trauma.

He-- - -what I was told subsequently was that he had perforated his stomach, and the assumption was, based upon what I had learned in secrecy by reading, you know, bits and pieces, was that he probably had been either abused by caregivers or that there had been some kind of traumatic event, you know, with another resident.

- I was just a year older than my brother, Luis Rivera, who was placed in Willowbrook State School at, at the age of five.

My mother would undress my brother as a way of assessing: was he gaining weight?

Were there any bruises?

Were there any marks?

That's how families tried to monitor the care because we weren't allowed to ask any questions.

- My little girl was, was two years old.

And we never knew where the children slept, or who fed them.

That first visit-- - -I had to cut her hair, because it was matted.

The director sent me a letter and told me if I didn't-- - -like it, then take her out.

So I got on the bus that next day.

I came out to Willowbrook.

I sat there all day long, until about 4:00.

The secretary said, "We're closing now.

You got to leave."

I said, "I'm not going anyplace."

[chuckles] He finally-- - -he decided to meet with me.

He didn't even look up at me.

I said, "Well, get someone to take a letter, I'll sign it, I'll take her out."

I said, "Before I take her out, I'm going to call the news media."

And that's when-- - -he asked me, did I want a cup of coffee?

[laughs] [laughter] - Thus, the beginnings of advocacy!

- Before Geraldo Rivera's exposé, there was a young reporter, Jane Kurtin, who went to Willowbrook, and actually did a series of articles exposing the conditions.

She was joined by Eric Aerts, who was a photojournalist who took some powerful photographs of the horrific conditions there.

So Jane really was the first to really bring public awareness to what was happening at Willowbrook.

- I got to know then, Mike Wilkins and Bill Bronston.

They contacted me and told me that there was something that I should see.

That they thought that I would be able to write about it.

They had faith, I think, in my perspective on things.

They walked me through the front door.

I mean, I was with people who were taking chances.

But there had been no prior exposure, so there were no alarm bells.

So it was just three people going through the through the front door.

- Nobody really believed it.

When Jane Kurtin did her articles in the Staten Island Advance, there were a couple of still photos, but still nobody believed it.

And we were sort of, we were being denounced from pulpits and other--politicians not believing us and they were thinking we were just radicals bad-mouthing an institution that was doing its best.

- The first thing I began to do was to bring the families inside, to show them why their kids were being destroyed, why every time they come, that kid would be more and more damaged, more and more injured.

- Bill Bronston and I quickly observed and concluded that the most progressive element in that institution was the parents.

- That led to meetings where I began to set up seminars for the families in order to understand why they had to get their kids out of here.

- The parents got involved, they got organized, they got confident because their meetings grew really big.

We had a meeting-- - -one Sunday, with a large group of parents.

The director, Dr. Jack Hammond, was invited.

He was asked to take a public stand against the conditions where there weren't enough clothes, there wasn't enough staff.

He refused.

He said, "I've been in this business for a long time and it won't work."

They ejected him from the meeting at that point, and that was a Sunday.

And that following Monday there was a memorandum circulated through the institution saying that no employee was allowed to attend a meeting of the parents organization.

But the next Sunday I did attend, and so did-- - -I'm sure, so did Bill.

And then we were promptly given our pink slips.

[somber music] - The supervisor in Building 6, a nice guy-- but it was his job to hand me my pink slip and tell me I was fired.

And I was pretty stunned, and his hand was shaking, and in his anxiety, he forgot to ask for the key.

And I didn't remember that I had it.

So I got home and there it was.

And so, of course, it made me think.

One of my thoughts was, "Man, if people just knew-- - -if they just knew about this place, and could see it for themselves, nobody would put up with it."

And so I slept on it, and the next day I called Geraldo.

I happened to know him from before.

- Well, Mike called me at one point and said that he had just been fired from Willowbrook.

And I said, "What's Willowbrook?"

It sounded so nice, that lyrical name, "The Willowbrook."

I thought it was like a country club.

He said he had just been fired and that the conditions there were so appalling that he thought it would be a great story for us to tell.

And I listened, I had no experience at all with either institutions or with the developmentally disabled.

So I was utterly unprepared for the reality of Willowbrook.

I was horrified.

I was appalled.

It was, it was beyond belief how horrible it was, how filthy it was.

It was hell on earth.

It was really--I mean, I was an experienced person, a very urban, very savvy, did all kinds of, you know, drug abuse stories.

And, you know, I was a tough guy.

But when I saw Willowbrook, it was it was something that seared my soul.

[somber music] The administrators had a colder, academic, excusing it away, thinking that we were naive, that there was something that we were missing.

And I think that my ignorance was my strength, in the sense that I looked and I said, "Are you kidding me?"

I mean, you have-- - -children unattended and smeared with their own feces and wailing under the sinks, their pants down around their ankles, eating slop.

I mean, what is it that I don't understand?

[breaks down] - I got back to the Eyewitness newsroom and there were a barrage of calls from New York State officials, angrily denouncing our trespassing and threatening lawsuits, and without authorization, violated the privacy of the, of the residents.

- There was no privacy anyway, very eloquently stated.

They lived, you know, everything, all communal.

So to his credit, Al Primo, the director of Eyewitness News, and the assignment editors said, okay.

They suspended judgment.

The film came back from the lab.

They saw the film.

Everyone's spine stiffened and they said, "We're going to go with this story."

It changed the world.

- But even Bernard, with his tragically eloquent plea for help doesn't really understand that what Willowbrook needs isn't more money.

More money would certainly help.

At least the kids would have clothes and they'd be cleaner than they are now.

But they'd still basically be human vegetables in a detention camp.

What we need is a new approach.

We have to change the way we care for our mentally retarded.

We ask for change.

We demand change.

[somber music] - The question was, what was the solution to this place?

They wanted to fix it--of course!

They wanted to pour another few millions of dollars into this place because they didn't have another alternative paradigm in their head.

And our job was to stop them from fixing this place and to shut it down!

[gentle music] We went in to the federal court in order to try and get an emergency intervention.

The lawyers brought in the top leaders in the United States to talk about what quality services for people with special needs look like.

Their testimony was just amazing.

It was the first time that the reality of habilitation services, of individualized, developmental services, was articulated in a court situation.

And so as the trial went on, finally, the judge decided to get up off of his bench and come and take a look.

And that closed the deal.

Once he saw it, once he walked through it, no matter what they did to clean it up-- - -and they tried to clean it up!

- The exposé really led to major changes in the disability system in this country, and various laws were passed which were designed to protect people with disabilities.

In 1975 alone, three significant laws were enacted, leading up to the passage of the Civil Rights for Institutionalized Persons Act, which protects the rights of people with disabilities in institutional facilities, followed by the official closure Willowbrook in 1987, paving the way for the Americans with Disabilities Act in 1990.

[hopeful music] - Did I take you back into Willowbrook?

- You never went back, yeah.

I wish that I never did.

[hopeful music] - So after Bernard left Willowbrook, he went on to become a civil rights activist for people with developmental disabilities and really was a driving force behind the creation of the statewide Self-Advocacy Association of New York State or SANYS, as it's called.

So he went on to do some great things after he left Willowbrook.

- Bernard is-- - -he went on to have a career in advocacy.

Where would he have been if he'd never met Wilkins and Bronston?

He became a symbol.

A symbol of-- - -of potential realized.

- Willowbrook affected the entire world.

It is the, it is the ground zero for disability rights.

- What I saw with my brother was a desire to live, a desire to experience the world as we know it, that was deprived and denied of him, by virtue of the institutionalization that he was subject to.

- I think it's also important to remember that where, that there were probably thousands of children who never survived being here, and they need to be remembered, too.

- The cost is a human cost, and being robbed of that potential in one's life is just a tragedy we would never want to see repeated again.

- There's no way to go ahead without remembering what happened in the past because it gives us direction.

It tells us, we have learned this lesson.

There's a duality for me with Willowbrook.

I think back about some of the saddest things that I saw here.

And then I think about the fact that this little boy, Josh, that learned to walk when he was eight only because there was no one helping him, that he took his first steps to me.

And when you grow up in an institution, we stunt that, that curiosity.

So I think about the sadness of it, but I think about Josh walking towards me and how that filled me.

- Those images that we saw in Geraldo Rivera's exposé, or in the photographs by Eric Aerts that appeared in the Staten Island Advance, the images that make us hurt, that's not that whole person.

That is that person in that historical moment.

It's important to remember that these are people with voices and dreams and hopes.

- The very first word that comes to mind is the one that came to mind for decades, which is "shame."

For me, it was a source of great shame that this happened to, [choking up] to my brother.

Over the years, and especially now, there's--I don't really feel shame anymore I actually--especially today, I'm extremely grateful.

I'm just grateful for the work that was done by Geraldo Rivera, by the activist physicians and parents.

And unfortunately, my family did not benefit from that.

It was too late for us, but not too late for so many others.

[hopeful music ends] [inspirational music] - When the doctors called me 50 years ago to tell me of this exposé that needed airing on television--Jane Kurtin's fine work at The Advance, to advance that story, of course, I had no idea that 50 years later, 35 years after the closing of this terrible institution, we would be gathered here celebrating the progress, guarding against-- deterioration and budget cuts and so forth.

But the world has changed for the developmentally disabled.

They have come out of the shadows.

[applause] - One, two, three!

[crowd cheers] - The ribbon cutting today, opening the Mile is a formal action of remembering the past to protect the future.

For now, it's about people walking on this Mile, walking on this property, and starting to really critically think and take steps.

And they can take personal actions to make sure that this never happens again.

Be the change that you want to see.

- That's exciting to me to see what has been built on the ashes of that, the phoenix that has risen from those ashes.

And that's the legacy.

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