00:00:13
foreign
00:00:19
[Music]
00:00:27
[Music]
00:00:56
I visited the state institutions for the
00:00:58
mentally [ __ ] and I think
00:01:00
particularly at Willowbrook that we have
00:01:02
a situation that borders on
00:01:05
a snake pad and that the children live
00:01:08
in built I think all of us are at Paul
00:01:10
and uh I think it's just a long overdue
00:01:13
that something be done about it how long
00:01:15
have you been at Willowbrook yeah how is
00:01:18
it living on the ward that you live
00:01:21
this Grace the attendants of trying
00:01:24
their best but the staff is just too
00:01:26
small to do anything more than just try
00:01:28
and keep the place clean when there's
00:01:30
only one person to take care of 30 or 40
00:01:32
nothing good can possibly happen no
00:01:35
Rehabilitation no training nothing the
00:01:37
attendants are as much the victim of the
00:01:39
conditions here as the patients are
00:01:45
[Music]
00:01:49
my problem with telling the story 50
00:01:51
years later is that I'm like Pavlov's
00:01:54
dog I I react and I get flashed back to
00:01:58
that to the obscene
00:02:01
the torture of the of the residents the
00:02:05
inmates there
00:02:07
something so so utterly terrible that it
00:02:11
was almost unbelievable this was a
00:02:13
secret Enclave
00:02:15
the system had set up a way that would
00:02:17
not allow any Ordinary People to see
00:02:20
what was going on inside these brick
00:02:21
buildings I was given this key on that
00:02:23
first day of work
00:02:25
pretty heavy steel key as you can see I
00:02:28
was told to go to a certain building and
00:02:30
I went there and I opened one door it
00:02:31
was very heavy metal door
00:02:34
turn the key opened it
00:02:36
and I worked a couple of steps and I had
00:02:38
to open a second door I was directed
00:02:39
down to the end of the hall there was
00:02:41
another steel door in 19 years of age I
00:02:44
basically said to myself hmm what have I
00:02:46
gotten myself into who is locked behind
00:02:49
three steel doors pushed the door open
00:02:52
and when I walked in on the other side
00:02:54
of the door with 40 toddlers
00:02:56
and why in God's name were they locked
00:02:58
behind three still doors
00:03:00
when I applied for my job I I was really
00:03:04
never taken to the to any of the wards
00:03:07
they just accepted my application and
00:03:10
they told me when I would start
00:03:12
and then I went to building six which
00:03:15
was my building
00:03:17
and uh building supervisor opened the
00:03:20
door to the day room and there was the
00:03:24
chaos
00:03:25
you have no idea what was inside no idea
00:03:29
the savagery the the squalor the the
00:03:32
illness the the infectiousness the
00:03:35
violence that was just the norm every
00:03:37
day
00:03:38
it had a stink to it that got into your
00:03:42
clothes and into your skin uh how uh how
00:03:47
unattended uh it was hell on Earth why
00:03:52
would you continue to allow people to
00:03:54
share a bath bathrooms with no doors on
00:03:57
the stalls when you know 100 of them get
00:03:59
Hepatitis within six months of entering
00:04:02
and when the incidence of the intestinal
00:04:05
parasites and worms was incredibly High
00:04:08
my name is thinking about
00:04:11
cookies and
00:04:13
can I used to grow up on the floor
00:04:18
and they are
00:04:21
get down
00:04:23
[Music]
00:04:26
oh man
00:04:28
[Music]
00:04:29
another another
00:04:37
mind you this is only 50 years ago that
00:04:40
we're not talking about the Dark Ages we
00:04:43
are still responsible we're not talking
00:04:45
about great grandparents and you know
00:04:47
ancient history this is our world our
00:04:52
universe has happened in our universe on
00:04:55
our watch
00:04:58
it's mind-blowing
00:05:00
[Music]
00:05:03
well Willowbrook has a long history
00:05:04
obviously on this site it actually was
00:05:07
first chartered 75 years ago and in the
00:05:10
charter it was described as a school for
00:05:12
the education of what they then termed
00:05:14
mental defectives what we now would say
00:05:17
probably would be people with
00:05:18
intellectual or developmental
00:05:19
disabilities so it started out with this
00:05:22
goal of educating and training people
00:05:24
and much of the coverage that you might
00:05:26
see in the newspapers then was designed
00:05:28
to encourage people to see this as a
00:05:30
good option for their children but very
00:05:32
quickly through underfunding and
00:05:34
understaffing it became really quite
00:05:37
unlivable at its height it had about
00:05:40
three times as many people living in its
00:05:42
Wards as the place was designed to
00:05:44
accommodate I would get calls for
00:05:46
example at the beginning that say to me
00:05:48
uh you know somebody's acting out you
00:05:50
need to sign straight jacket order you
00:05:52
need to sign a Thorazine shot to cool
00:05:54
them down and I didn't understand what
00:05:56
was going on here at first really was it
00:05:58
took me a year to really see and figure
00:06:01
out the evil you know the Relentless
00:06:03
cruelty that was built into this system
00:06:06
to maintain the status quo
00:06:09
lack of privacy and that many of the
00:06:12
people were at that time because of the
00:06:14
budget cuts there weren't enough changes
00:06:16
of clothing to go around so there was
00:06:19
nudity chaos nobody nobody came into
00:06:23
these buildings not the director of this
00:06:25
place nobody came into those buildings
00:06:27
they were sealed off you know as as
00:06:30
coffins they were living coffins for
00:06:33
devalued people
00:06:40
the younger sister of
00:06:43
a previous resident of Willowbrook who
00:06:45
lived here for 10 years before he died
00:06:47
in 1968. he
00:06:50
actually became a bit of a family secret
00:06:53
I was told that I didn't visit because I
00:06:56
didn't want to go at the age of three I
00:06:59
believe my mother never went because it
00:07:02
was too painful doctors social workers
00:07:05
and the belief at that time was in a
00:07:08
situation like this your best bet is to
00:07:11
drop your child off and they will get
00:07:14
cared for and to move on with your life
00:07:16
and that is what my parents tried to do
00:07:19
my mother never ever forgave herself
00:07:23
ever when you worked here if you
00:07:27
continued to work here you started to
00:07:29
have you had it to become a little bit
00:07:31
impervious you had to be able to deal
00:07:34
with this I always say that we became a
00:07:36
little bit institutionalized because
00:07:37
this was such a surreal thing but
00:07:41
if I left who was going to come I mean I
00:07:44
felt I could do something maybe I could
00:07:46
change what was happening on a daily
00:07:48
basis my brother died on July 4th 1968 I
00:07:54
was always under the impression that his
00:07:56
death was due to some type of trauma
00:08:00
um he what I was told subsequently was
00:08:05
that he had perforated his stomach and
00:08:08
the assumption was based upon what I had
00:08:12
learned in secrecy by reading you know
00:08:16
bits and pieces was that he probably had
00:08:18
been either abused by caregivers or that
00:08:22
there had been some kind of traumatic
00:08:24
event you know with another Resident I
00:08:28
was just a year older than my brother
00:08:30
Louis Rivera who was placed in
00:08:32
Willowbrook state school at the age of
00:08:34
five my mother would undress my brother
00:08:36
as a way of assessing
00:08:38
was he gaining weight were there any
00:08:40
bruises were there any marks that's how
00:08:42
families tried to monitor the care
00:08:45
because we weren't allowed to ask any
00:08:46
questions my little girl was was two
00:08:49
years old and we never knew
00:08:52
where the children's Club
00:08:56
who fed them
00:08:57
the first visit
00:09:01
I had to cut her hair because it was
00:09:03
mattered the director sent me a letter
00:09:06
and told me if I didn't like it it'd
00:09:10
take off
00:09:12
so
00:09:13
I got on the bus that next day I came
00:09:17
out to Willowbrook I sat down all day
00:09:19
long
00:09:22
until about four o'clock secretaries say
00:09:24
we're closing there you got to leave us
00:09:26
I'm not going into play
00:09:28
ain't funny
00:09:30
he decided to beat Rick
00:09:33
he didn't even look up at me
00:09:35
I said well get someone to take the
00:09:38
letter I'll sign it I'll take out I said
00:09:43
before I take her out I'm gonna call the
00:09:45
news media and that's when
00:09:48
he asked me did I want a cup of coffee
00:09:51
[Laughter]
00:09:55
the beginnings of advocacy
00:09:59
before Geraldo Rivera's expose there was
00:10:01
a young reporter Jane Curtin who went to
00:10:04
Willowbrook and actually did a series of
00:10:07
Articles exposing the conditions
00:10:11
she was joined by Eric Arts who was a
00:10:14
photojournalist who took some powerful
00:10:16
photographs of the horrific conditions
00:10:19
there so Jane really was the first to
00:10:22
really bring public awareness to what
00:10:25
was happening at Willowbrook I got to
00:10:28
know then Mike Wilkins and Bill bronston
00:10:31
they contacted me
00:10:34
and told me that there was
00:10:37
something that would that I should see
00:10:39
that they thought that I would be able
00:10:42
to write about it they had faith I think
00:10:45
in my perspective on things they walked
00:10:49
me through the front door I mean I was
00:10:51
with people who were Taking Chances but
00:10:54
there had been no prior exposure so
00:10:56
there were no alarm Bells so it was just
00:10:59
three people going through the through
00:11:01
the front door nobody really believed it
00:11:04
we when Jane Curtin did her articles in
00:11:07
the Staten Island Advance there were a
00:11:09
couple of still photos
00:11:10
but still no nobody believed it and we
00:11:15
were sort of we were being denounced
00:11:16
from pulpits and and other politicians
00:11:20
not believing us and they were thinking
00:11:22
we were just radicals bad-mouthing an
00:11:25
institution that was doing its best the
00:11:27
first thing I began to do was to bring
00:11:28
the families inside to show them why
00:11:31
their kids were being destroyed why
00:11:33
every time they come their kid would be
00:11:35
more and more damaged more and more
00:11:37
injured bill broster and I quickly uh
00:11:40
observed and concluded that uh
00:11:44
the most Progressive uh element in that
00:11:48
institution was the parents that led to
00:11:51
meetings where I began to set up
00:11:53
seminars for the families in order to
00:11:55
understand why they had to get their
00:11:57
kids out of here the parents got
00:11:59
involved they got organized they got
00:12:01
confident because their meetings were
00:12:03
really big we had a meeting of
00:12:07
um one Sunday with a large group of
00:12:10
parents the director Dr Jack Hammond was
00:12:14
invited he was asked to take a public
00:12:16
stand against the conditions where there
00:12:18
weren't enough clothes there wasn't
00:12:20
enough staff he refused he said I've
00:12:23
been in this business for a long time
00:12:25
and it won't work they ejected him from
00:12:28
the meeting at that point
00:12:31
um and the that was a Sunday and that
00:12:33
following Monday there was a memorandum
00:12:36
circulated through the institution
00:12:38
saying that no employee was allowed to
00:12:41
attend a meeting of the parents
00:12:43
organization
00:12:44
but the next Sunday I did attend and so
00:12:48
did I'm sure so did Bill
00:12:50
um and then we were promptly given our
00:12:54
pink slips
00:12:55
[Music]
00:12:58
foreign
00:13:01
the supervisor in building six a nice
00:13:05
guy but it was his job to hand me my
00:13:07
pink slip and tell me I was fired and I
00:13:09
was pretty stunned
00:13:11
and his hand was
00:13:13
shaking and in his anxiety forgot to
00:13:17
take pass for the key
00:13:19
and I've been remember that I had it so
00:13:22
I got home and and there it was and so
00:13:25
of course it made me think because one
00:13:28
of my thoughts was man if people just
00:13:31
knew if they just knew about this place
00:13:33
and I could see it for themselves nobody
00:13:37
would put up with it and so I slept on
00:13:41
it and the next day I called Geraldo I
00:13:44
happen to know him from before well Mike
00:13:47
called me at one point and said that he
00:13:51
had just been fired from Willowbrook I
00:13:53
said what's Willowbrook it sounded so
00:13:55
nice that lyrical name the Willowbrook I
00:13:57
thought it was like a country club he
00:14:00
said he had just been fired and that the
00:14:01
conditions there were so appalling that
00:14:04
he thought it would be a great story for
00:14:07
us to tell
00:14:09
uh and I listened I had no experience at
00:14:12
all with either institutions or with the
00:14:15
developmentally disabled so I was
00:14:18
utterly unprepared
00:14:20
for the reality of Willowbrook
00:14:25
I I was horrified I was appalled it was
00:14:29
uh it was beyond
00:14:31
belief how how horrible it was how
00:14:35
filthy it was it was it's hell on Earth
00:14:38
it was really I mean I was
00:14:40
experienced person you know
00:14:43
a very Urban uh very Savvy did all kinds
00:14:48
of you know drug abuse stories and you
00:14:52
know I was a tough guy but when I saw
00:14:54
Willowbrook it was uh it was something
00:14:57
that
00:14:58
seared my soul
00:15:01
[Music]
00:15:11
the administrators had a
00:15:13
a cold or uh
00:15:16
academic
00:15:18
excusing in a way as thinking that we
00:15:22
were naive that there was something that
00:15:24
we were missing and I think that my
00:15:26
ignorance
00:15:28
was my strength in the sense that I
00:15:31
looked I said are you kidding me
00:15:33
I mean yep
00:15:35
children unattended and smeared with
00:15:37
their own feces and wailing under the
00:15:41
sinks their pants down around their
00:15:43
ankles eating slop I mean what is it
00:15:45
that I don't understand
00:15:56
more and more
00:15:58
I got back to the eyewitness Newsroom
00:16:01
and there were a barrage of calls from
00:16:04
New York State officials
00:16:06
angrily denouncing our trespassing and
00:16:10
threatening lawsuits and without
00:16:14
authorization violated the privacy of
00:16:16
the of the residents but give nobody for
00:16:20
you anywhere there was no privacy anyway
00:16:24
very eloquently stated they lived you
00:16:27
know everything all communal so to his
00:16:32
credit Al Primo the director of
00:16:35
eyewitness news and the assignment
00:16:37
editors said okay they suspended
00:16:39
judgment the film came back from the lab
00:16:42
they saw the film everyone's spine
00:16:45
stiffened and they said we're gonna go
00:16:48
with this story
00:16:49
it changed the world
00:16:51
but even Bernard with his tragically
00:16:53
eloquent plea for help doesn't really
00:16:55
understand that what Willowbrook needs
00:16:57
isn't more money more money would
00:16:59
certainly help at least the kids would
00:17:00
have clothes and they'd be cleaner than
00:17:01
they are now but they'd still basically
00:17:04
be human vegetables in a detention Camp
00:17:06
what we need is a new approach we have
00:17:08
to change the way we care for our
00:17:10
mentally [ __ ] we ask for change we
00:17:12
demand change
00:17:13
[Music]
00:17:18
the question was what was the solution
00:17:20
to this place they wanted to fix it of
00:17:23
course they wanted to pour another few
00:17:25
millions of dollars into this place
00:17:27
because they didn't have another
00:17:28
alternative Paradigm in their head and
00:17:31
our job was to stop them from fixing
00:17:34
this place and to shut it down
00:17:36
[Music]
00:17:44
we went into the federal court in order
00:17:47
to try and get an emergency intervention
00:17:50
the lawyers brought in the top leaders
00:17:53
in the United States
00:17:55
to talk about what quality services for
00:17:59
people with special needs look like
00:18:00
their testimony was just amazing it was
00:18:04
the first time that the reality of
00:18:07
habilitation Services of individualized
00:18:11
developmental Services was articulated
00:18:14
in a court situation and so as the trial
00:18:18
went on finally
00:18:20
the judge decided to get up off of his
00:18:22
bench and come and take a look
00:18:24
and that closed the deal
00:18:26
once he saw it once he walked through it
00:18:28
no matter what they did to clean it up
00:18:30
and they tried to clean it up
00:18:32
the expose really led to
00:18:36
major changes in the disability system
00:18:38
in this country and various laws were
00:18:40
passed which were designed to protect
00:18:42
people with disabilities
00:18:44
in 1975 alone three significant laws
00:18:48
were enacted
00:18:50
leading up to the passage of the civil
00:18:52
rights for institutionalized persons act
00:18:54
which protects the rights of people with
00:18:56
disabilities and institutional
00:18:57
facilities
00:18:59
followed by the official closure of will
00:19:00
Brook in 1987.
00:19:03
Paving the way for the Americans with
00:19:05
Disabilities Act in 1990
00:19:12
. did I take you back into Willowbrook
00:19:15
you never went back yeah I I wish that I
00:19:19
never did
00:19:21
[Music]
00:19:24
so after Bernard left Willowbrook he
00:19:26
went on to become a civil rights
00:19:28
activist for people with developmental
00:19:30
disabilities and really was a driving
00:19:32
force behind the creation of the
00:19:34
Statewide self-advocacy Association of
00:19:36
New York state or sainies as it's called
00:19:38
so he went on to do some great things
00:19:40
after he left Willowbrook we're not
00:19:42
there yet but we're getting there with
00:19:47
all the
00:19:49
advocacy parents efficacy
00:19:54
self-advocates
00:19:57
on Sandy's
00:20:01
and
00:20:03
because of banana cambello it's all
00:20:08
started because of him and we're
00:20:13
grateful
00:20:15
you know we got a moment ago
00:20:20
this could go on forever
00:20:24
until we change our attitude about
00:20:28
people who put the problems
00:20:32
[Music]
00:20:35
Bernard is he went on to have a career
00:20:39
in advocacy where would he have been
00:20:43
if he'd ever met Wilkins in Bronson he
00:20:46
became a symbol
00:20:48
a symbol of
00:20:50
a potential realized
00:20:54
Willowbrook affected the entire world it
00:20:57
is it is the ground zero for disability
00:21:00
rights what I saw my brother was a
00:21:04
desire to live a desire to experience
00:21:07
the world as we know it that was
00:21:09
deprived and denied of him by virtue of
00:21:12
the institutionalization that he was
00:21:14
subject to I think it's also important
00:21:16
to remember that where that there were
00:21:19
probably thousands of children who never
00:21:22
survived being here and they need to be
00:21:25
remembered too the cost is a human cost
00:21:28
and being robbed of that potential in
00:21:31
one's life is just a tragedy we would
00:21:33
never want to see repeated again there's
00:21:35
no way to go ahead without remembering
00:21:36
what happened in the past because it
00:21:38
gives us Direction it tells us we have
00:21:41
learned this lesson it is a duality for
00:21:43
me with Willowbrook I think back about
00:21:46
some of the saddest things that I saw
00:21:47
here
00:21:49
and then I think about
00:21:51
the fact that this little boy Josh
00:21:54
that learned to work when he was eight
00:21:56
only because there was no one helping
00:21:58
him that he took his first steps to me
00:22:00
and when you grow up in an institution
00:22:02
we we stunt that that Curiosity
00:22:06
so I think about the sadness of it but I
00:22:09
think about Josh walking towards me and
00:22:11
how that filled me those images that we
00:22:14
saw in Geraldo Rivera's expose or in the
00:22:18
photographs by Eric Arts that appeared
00:22:19
in Staten Island Advance the images that
00:22:22
make us
00:22:23
hurt that's not that whole person
00:22:26
that is that person in that historical
00:22:28
moment it's important to remember that
00:22:29
these are people with voices and dreams
00:22:31
and hopes the very first word that comes
00:22:34
to mind is the one that came to mind for
00:22:37
decades which is shame
00:22:39
for me it was a source of great shame
00:22:43
that this happened to
00:22:46
um
00:22:47
to my brother
00:22:50
um over the years and especially now
00:22:55
there's I I don't really feel shame
00:22:57
anymore I actually
00:22:59
especially today I'm extremely grateful
00:23:03
I'm just grateful for
00:23:07
um the work that was done by Geraldo
00:23:09
Rivera by the activist Physicians and
00:23:12
parents and unfortunately my family did
00:23:16
not benefit from that it was too late
00:23:19
for us but not too late for so many
00:23:22
others
00:23:23
[Music]
00:23:36
uh
00:23:39
when the doctors told me 50 years ago
00:23:44
to tell me about this expose that needed
00:23:48
airing on television Jane curtin's farm
00:23:51
work at the advance to advance that
00:23:54
story of course I had no idea that 50
00:23:57
years later
00:23:59
35 years after the closing of this
00:24:02
terrible institution we would be
00:24:04
gathered here celebrating the progress
00:24:07
guarding against
00:24:11
deterioration and budget cuts and so
00:24:14
forth
00:24:15
but the world has changed for the
00:24:18
developmentally disabled they have come
00:24:20
out of The Shadow
00:24:21
[Applause]
00:24:24
[Music]
00:24:26
the ribbon cutting today of opening the
00:24:28
mild is a formal action of remembering
00:24:31
the past to protect the future for now
00:24:34
it's about
00:24:36
people's walking on this mile walking on
00:24:39
this property and starting to really
00:24:41
critically think and take steps and they
00:24:44
can take personal actions to make sure
00:24:46
that this never happens again be the
00:24:47
change that you want to see that's
00:24:49
exciting to me to see what has been
00:24:51
built on the ashes of that the Phoenix
00:24:53
that has risen from those ashes and
00:24:56
that's the Legacy
00:24:58
[Music]
00:25:24
thank you
00:25:25
[Music]
00:26:08
thank you
00:26:12
thank you
00:26:20
[Music]
00:26:36
[Music]
