MetroFocus: May 25, 2023

>> It has been 50 years since Geraldo Rivera exposed the conditions in the Willowbrook State school, forever changing how disabilities are treated.

We will look on his groundbreaking reporting and meet the Willowbrook patient turned advocate fighting for an even more inclusive future as MetroFocus starts right now.

♪ >> This is MetroFocus with Rafael Pi Roman, Jack Ford, and Jenna Flanagan.

MetroFocus is made possible by Sue and Edgar Wachenheim the third, Phil and m foundation, the Peter G pewter sin and Joan cans Cooney fund, Barbara Hope Zuckerberg, and Jody and John Arnhold, Dr. Robert c and Tina song foundation, the Ambrose Monell Foundation, estate of Roland Karlen.

>> Good evening and welcome to MetroFocus.

I'm Jack Ford.

Geraldo Rivera shocked the nation with his groundbreaking exposé on the abuse taking place at Willowbrook State school.

At the time, the largest institution for people with disabilities.

His reporting, which featured interviews with patients and deplorable conditions of the facility led to the closing of Willowbrook and the passing of civil rights protections for people with developmental disabilities.

A new documentary created by the disabilities planning Council titled "the path forward: remembering Willowbrook," looks back on this event 50 years later.

>> How long have you been at Willowbrook?

>> 15 years.

>> How is it living on the ward you live?

>> A disgrace.

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

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

No rehabilitation, training, nothing.

They are just as much a victim as the patients are.

♪ >> My problem with telling this story 50 years later is I'm Pavlov's dog, I react and I flash back to the obscene, the torture of the residents, the inmates there.

There's something so utterly terrible that it was almost unbelievable.

>> Joining us are the acting Executive Director of the New York developmental disabilities Council and producer of the film, a former patient at Willowbrook and founder of the self-advocacy Association of New York State," and Geraldo Rivera, the host/author, whose story changed our country's treatment of disabilities forever.

Good to have you with us.

Let me start with Geraldo.

We go back decades.

I remember this story you did.

I was in law school at the time.

Let's preface this conversation about the documentary with you telling us how you came across this story and how you conducted this extraordinary investigation.

>> There was a doctor, Michael Wilkins, two of them, and Bill Brunson, who were disgusted with the conditions at Willowbrook State school.

They left with the intent on exposing to the world the horrible conditions the witnessed up close and personal.

It really was the tip.

I knew the doctors, I believed in them, I had worked with them on previous stories.

I did not believe the descriptions, the graphic descriptions of what I was about to see.

It was too unbelievable.

Too graphic and horrifying.

I said it is going to be bad.

I did not know it would be this bad.

It was awful.

The worst experience I had ever seen.

>> How did you go about getting access?

One of the highlights of this story, if you use the term "highlight," was your access to the facilities and the residents.

How did that come about?

>> One of the enticements for me to do the story, not that I needed much encouragement, was the key.

Mike Wilkins had prolonged a key to one of the buildings.

Building six.

The key opened all of the facilities.

With the knowledge I can gain access, even though we knew we would be caught and thrown out eventually, but having the key was the added incentive we needed to do the story.

They were not going to keep us outside.

Even Robert Kennedy was not allowed to bring cameras in.

In 1965, he left rattled calling it a snake pit.

We were determined.

I was going to capture on film.

It was filmed in those days, not video.

I captured the horrifying harsh reality.

>> When you went to your producers and proposed -- this is what I want to look into, and when it unfolded and became so graphic and painful to watch, did you get pushback from the people inside, the producers saying should we be doing this, or did everybody get in on it?

>> No one believed the monumental scope of the story.

When I pitched it after it was pitched to me, having not seen it myself, there was a reluctance, but a grudging acceptance I had by that time been in the business for a couple of years, I had a good track record.

If I say it was a good story, they tended to believe me.

We had no idea what we were dealing with.

This was so catastrophic and cataclysmic, I was a veteran of street reporting, fighting my way in with junkies, some of the worst things of the mean streets of New York City.

I was unprepared.

It is something that haunts me.

I can still hear it and I can still smell it a half a century later.

>> Having seen it at the time for the folks watching this, watching hopefully a documentary, it was shocking is a dramatic understatement to describe what it is you found.

We are 50 years gone by now.

There have been changes made.

I will come to them in a few minutes.

The first question is why did you want to do this documentary and why now?

>> We always need to remember the past to protect the future.

Last year with the 50th anniversary upon us, it was my idea.

I remember this story, watching it when I was younger.

We need to make a documentary on this.

Our goal with the documentary was to raise awareness.

There aren't many people, particularly younger generations that never heard of Willowbrook.

It needs to change.

We need to raise awareness.

But also we wanted it to be filmed to be a celebration of inclusion for people with disabilities.

The laws that were passed after the expose designed to protect people with disabilities.

We want people to be aware of that that we may tremendous change in the delivery system.

We are so grateful for Geraldo and Bernard for paving the way.

>> I will get to you in a few moments.

It is interesting when you say celebration.

You would not usually associate it with Willowbrook.

What happened after this and as a consequence, it needs to be applauded.

We will get there in a moment.

Let me bring you into the conversation, Bernard.

You are a resident at Willowbrook for a good portion of your life.

How did you get there?

Why were you placed there?

Tell me about the conditions before Geraldo got there.

Tell me what you remember about the conditions.

>> Every room had about 80 people.

Every ward had about 60 people.

And two staff to take care of all the people.

>> Why did you want to talk to Geraldo back then?

[Indistinct] Was getting worse and worse at the time.

And I felt this cannot go on.

>> One of the aspects that made it so powerful was it wasn't a look at Willowbrook from 10,000 feet up, bringing in experts and what needs to be done.

You were in the door.

You got in the door.

And you talked to people like Bernard.

That was a bit unusual approach to take.

Even in an in-depth investigation like this.

Using Bernard and others, using your sources, why did you decide to do that?

At some point in time, were you concerned that it would work or not for telling this story?

>> That is a great question.

I had very little experience with people with disabilities.

Not anyone in my family.

Classically, the warriors are the parents of the people close to it.

Indeed in the Willowbrook saga, the parents really lead the way.

But having never seen or experienced it, I think it helped in a sense that I was so utterly unprepared.

We are talking about New York City.

It is not like the steppes of Russia.

This was New York City.

The world's largest institution of this sort.

The level of care was so scandalous.

It was unbelievable.

It was unbelievable this could exist in the capital of the world.

In New York City, and go on for so many years.

Despite Robert Kennedy's heroic efforts and the parents and their lonely plea.

There it was.

Once we started the process of recording what was happening.

No disrespect to anyone, but I can relate now to what American GIs felt when they came to the concentration camps.

I know it may sound like a wild exaggeration, but it is not.

These weren't death camps, but they were places where people with disabilities were utterly abandoned.

And whatever condition they had was being exacerbated, was being made worse.

Open sores, smeared with their own feces, knocking their heads against the wall, kids under kitchen sinks.

Bernard said 60 residents, two attendants, one of them usually gone.

One person with three kids hanging onto her.

Then they fed them this slush in an assembly line.

Each kid like a little bird opening their mouth and shoveling this slushy mush.

>> Talk about two or three minutes of -- >> Just imagine -- As someone looking back on it now, having seen it when it was there, it literally grabbed you by the throat.

You just did not imagine anything like this existing in the 1970's in New York City.

One description was these were coffins with people being thrust inside and left there.

Is it from your perspective, a fairly accurate...?

>> Yes.

I never visited, but you will see in the documentary, Jane Curtin was the first.

She had gone there and had taken horrific, horrible photographs showing the conditions.

But nothing happened.

She talked about it.

It was amazing that this happened during our watch.

During our lifetime.

It is amazing.

Not back in the old days.

50 years ago seems like a long time ago.

I was alive back then.

Just incredible to see.

I think the description is accurate.

I was never there, but from what I have seen it was horrifying.

>> From what you learned, certainly was not designed initially to be this horrible scenario.

How did it lose its way?

>> It was opened in the 1940's and designed to be state-of-the-art facility where people would want to send their children to get the best care.

Back then, they said your best bet is to send them to an institution.

Willowbrook was not the only institution.

It was designed for 2000 people.

Due to budget cuts, they had to cut back staffing.

There were more people who needed to care.

Had over 6200 people.

The largest institution in the world.

It gradually happened over time because of budget cuts and cutting staff.

Initially I think they had good intentions.

>> It was not something that was able to be remedied which resulted in it shutting down a few years after the report?

>> To continue Vicki's thought, it became a reality of out of sight out of mind.

The parents, in Bernard's case, his mom, economically disadvantaged.

She has a child.

Bernard had a condition improperly diagnosed.

So the doctor says to the poor Puerto Rican woman on the lower East side, put him in the institution.

It was a conversation that happened hundreds of thousands of times to other families over time.

So the institution became the go to.

The institution became you have a situation, kid is not absolutely perfect, plop.

Then the conditions generally deteriorated.

Some noble souls who tried their best.

There was no remediation, no education.

No sanitation.

There was only the convenience of you have a problem, here's how you deal with it.

Then you go on with life.

Then the average life expectancy was 20, 30 years.

>> A staff of 60 people on a weekend.

>> One staffer.

>> Parents were not allowed to visit.

They would visit but they were not allowed inside the building to see the conditions.

>> These conditions were not seen essentially until Geraldo's story came out?

>> Yes.

>> Let me go back to something you mentioned.

I think the documentary does a good job focusing on this.

Often times it takes great crises, great tragedies to prompt change.

Talk about -- it is hard to use the word positive in conjunction with Willowbrook.

Talk about things that have come out as a consequence of this story being told that you can look at as being positive.

>> Willowbrook closed along with other institutions across the state.

There were several laws passed.

One law was the handicapped children act.

There hadn't been allowed to do that before.

There was another law called the civil rights for institutionalized persons act which protects people in institutions.

As a result of the exposé, every state and territory across the country designed to protect the rights of people with disabilities to advocate.

It was such a force making major changes in the disability system.

>> I know you left after this.

You started up the self-advocacy Association of New York State.

What does your group do to help people who find themselves in need of assistance?

>> -- other people who... [Indistinct] >> You have been doing that since you left?

>> Yes.

>> He's an old man now.

[Laughter] >> As I said, we go back decades.

First our days as lawyers, then early days in television.

Bernard is just a kid here.

>> I was -- I'm the same age as you are.

>> You are doing well.

>> We talked about some of the positive things that have come out of this.

What still needs to be done.

>> That is the other point.

We've made a lot of progress, but we've got work to do.

There are major barriers people with disabilities face to live fully and completely live.

We know people who have disabilities is much higher than for people without disabilities.

They still have barriers to finding appropriate housing, affordable housing in the community.

Barriers to transportation.

A host of barriers.

There is still work to be done.

We are getting there, that is why we are on the path forward.

We are not there yet, we still have barriers to address and protect against further budget cuts.

That is the other thing.

We have strong advocates, parent advocates and self-advocates who do a good job making sure we don't see the kind of budget cuts we saw back in the days of Willowbrook that resulted in that institution becoming what it did.

>> How important are advocacy groups like Bernard and his group to keeping this, and in some ways, the image of how bad this was in front of the public so we don't let it go back, and so we can make sure as you talk about it that we are moving forward?

>> It is so important.

My organization works closely with the advocacy Association along with other parent and self advocacy groups.

Those personal stories really resonate with policymakers, legislators, and the general public.

Having people continue to raise awareness about Willowbrook.

There are still instances of abuse happening now.

We have group homes.

We hear about it.

It has not gone away.

So we need to have those people like Bernard who has done a great job and is a strong advocate.

That is important for policymakers and legislators to hear those stories.

>> I've got about a minute left.

You know time and television.

You look back at this 50 years later.

People will be looking at this for the first time.

It is a marvelous documentary.

It makes people think what do you want people to come away with after they have watched this documentary?

>> I want the friendship Bernard and I have -- it is almost like -- it is my reward for anything I've done.

I cherish him.

He's my brother.

We joke we are twins.

He's been my guide, my inspiration.

I want people to guard against what Vicki alluded to, the out of sight out of mind phenomena.

You have to stay engaged.

Whether it is your old mom in the nursing home, a kid in a group home.

If you don't have the outside looking in, there is a tendency to cut corners.

A tendency to staff light on the weekends.

To underpay.

To not vet staffers to put in that extra resident or two in a place designed for fewer people.

There is a tendency to go take the easy way out.

This is the right way.

I'm not preaching.

Everyone has to deal with their own situations in their own way, but just no more out of sight, out of mind.

We are all created equal.

The laws of the state and the country demand, mandate, require equal treatment.

I think equality -- the equality guaranteed by the Bill of Rights is what we should bear in mind.

God bless everybody, the lawyers from New York civil liberties Union and the others and what they did.

>> And as you say, it is clearly the right way.

An extraordinarily compelling story, it remains compelling.

Thank you for spending time with us and putting together a documentary that makes us feel and hopefully puts us on the path in the right direction.

Take care now.

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♪ >> MetroFocus is made possible by... C1 Edgar Wachenheim the third.

the Peter G. Peterson and Jones Cooney Fund, Bernard and Denise Schwartz, Barbara Hope Zuckerberg, and Jody and John Arnhold.

Dr. Robert C. and Tina Song Foundation.

The Ambrose Monell foundation.

Estate of Roland Karlen.