Inside Pennhurst Asylum: Understanding Disabilities Through The Decades | Only Human

We have had a

human

dilemma since the beginning of time: what do we do with people who are different? They were trying to provide a protective,

human

e and caring environment where people could live their lives in peace and tranquility, that was the original intention of the institution it was loving it was caring everything was there for you but when you go out here you fall and you get hurt and you need help no one wants to get involved to help you there are therapists all over the country who are still trying to figure out how to help people overcome their PTSD from everything that happened to them in these institutions, the mental retardation field I really mean, It's much better.

I want you to understand. I feel like it's a much, much better, but wow, it's come a long way but there's still a long way to go, oh my god, that place was shaking the world, we got more, I'm telling you, I'll tell you, if I met when I was nine years old, you would. You understand, you would understand, so yeah, I had a lot of good times. Yes, I would describe myself as a person who did not have a good childhood life. My father told him to leave that boy alone. He's just sick. My aunt said I have a son. that way I couldn't do anything with him either Bernadette was 3 years old she couldn't communicate she didn't want to I guess and she was autistic and um but the mother had tried to kill her and obviously she didn't want the child but we loved her and she started to blossom and um yeah, she had burned to a dead man for three years.

I guess the state thought it was more feasible to put her in prison and cheaper than paying to care for her and Fuster in a foster home and uh. We humans have a long history of how we treat people with mental differences and in the United States we go back to the mid-19th century when a gentleman named Samuel Gridley brought the institutional model to this country. vacation in Germany and came back with an idea for a model that mentally retarded people later called the degrading terms of imbeciles and idiots. We started putting them in separate distant locations around 1850 in this country and that was the At the beginning of segregation, we had almost 200,000 Americans with developmental

disabilities

in public institutions, separated, segregated from the rest of society and isolated.

One of the reasons for people going to Pennhurst in the early days was to keep them out of the mainstream. of the gene pool so that if there was a genetic cause for your disability it couldn't be passed on to anyone else, so sexual and reproductive relationships were prohibited, people couldn't get married, in fact, they were very busy being sterilized and we had books being Theories are written and proposed in our professional journals about how these people are contaminating the gene pool and ruining the breed and have to be eliminated, even today people labeled men are retarded in Pennsylvania have to be eliminated. request permission from the orphans court. to get married even today my mother was a poor housekeeper and they put me in a dark room and she went to work and it was a social worker called a veterinarian who went in there and found me.

I was like a dog there. and uh, she took, they took my mother and my sister to court and uh, they took me away from her and uh, they committed me there on September 42nd. Sandra suffered a brain injury at birth. I had a totally normal labor period except it was rushed and her head was there and the doctor wasn't and the nurses crossed my legs to hold her back they crushed her brain. I've had to live with this and uh, I'm not the

only

one, there are a lot of people who have problems and we.

We have to live with what we have. My father almost suffocated me with a pillow before he died. He asked me for forgiveness and I gave it to him. Then my mother put the pin on me. She had a bad temper and was rebellious. They told me that they would be institutionalized for the rest of my life. life. My mother said they have to lock you up somewhere and I can't handle you anymore. That's all. She said there were some people that came and picked me up P she that was very scary very very scary most of them were just put there because the parents didn't want them and they didn't know how to deal with them so a lot of that stuff They happened, they just brought them. people there, we left them and walked away, we had no choice because their hyperactivity was having an effect on Christopher who was 3 years younger, so we had to make a decision and the

only

thing available was Penhurst, the Pennhurst State School for the weak. mental and epileptic was its own miniature city, a kind of closed society designed to house about 18,800 people, we had a barber shop in a hair salon, we had doctors who were Pennhurst doctors, they had a dentist, psychologists on site, there was a psychiatrist , there were social workers, they had a greenhouse they had all kinds of things it was very nice I can still see The Lawns down to the river and uh the buildings in those days were immaculate usually a person was greeted by a nurse there was a kind of waiting room familiar. and they took the person away, the family did the paperwork, met with a social worker, and that was the last time the family would have seen that child for the next month or two.

At first it was a little shocking to see something so big and so many people, but they told me where it would be, what it would be and what would happen to it. He had no problems when I arrived at Peners. I thought it was fine and I went to the hospital. She looked good, she looks pretty. Well for me, some of what was the first thing he did when he went to Pennhurst, I'm a cigarette, mhm, but once I was there, it was just, it was something that surprised me how things got very overwhelmed by me I was just crying with tears and I I CRI said my mom is gone, my dad is going.

I will never see my sisters or my brother or anyone again. I'm here for life. We handed Bob over to the institution's superintendent. and uh I tried not to cry and I waved and said goodbye I don't think he had any sense of what was to come um I don't think any of us knew how I got involved um well of course I'll go visit Bernardet naturally and um , but I thought it would be good to volunteer. I thought it would be something cool to do, mainly trying to get them to do things and talk and sing and I just enjoy being people I guess.

I used to bring my records and take them to war. I got all these 45 records, took them to the W and played them for the kids so they could dance. They remember the birth. I used to say I got my education right. Being in the We used to go down. to the canteen and buy our cigarettes there and buy our coffee or whatever I can take on a bus and go to Potown do my shopping and stuff like that, I just live riding with my check, I play, I play in the gym and stuff like that, Yes, you taught me about the Bible, the Bible says, that's the book for me.

I'm sticking to God's word, it's just that they had classes, um, they didn't go to educational classes, they went to activities, so they had activities, we had music therapy next to the A way to help patients who were unusually excited or something like that would be an activity to maybe learn to keep time to music or use a drum or whatever to encourage their more normal or more acceptable behavior. My girlfriend and I went and she played the accordion. and we went to what they called, um, sorry, the vegetable bins and uh, and the crib babies who had never had visitors or entertainment or anything, we would choose those places, we would sing to them, they couldn't talk, they couldn't do anything, They just went to bed. there nothing and but his eyes changed and uh it was so beautiful Sandra had a foster grandfather and these people would come uh spend time with them they would take them for a walk they would talk to them um just to be friends so they would see For other people it was a wonderful program.

I don't know what happened to him. I don't think it still exists, but it was good. We had a lot of community support in Spring City and there were a lot of people from Spring City who did a lot for Panhurst, the staff at Pennhurst were fantastic human beings, they were there because they cared and tried to help, and I thought all I saw were kind people who I was trying to do the right thing for people who needed help. I had no experience. I didn't have any experience at all, so I just went to the pentest and filled out an application.

I didn't really know what I was getting into as far as how to deal with customers, there wasn't that much training, you just walked in there. more like green and you noticed how as you went along I remember we went to Ward M2 and it was bathroom day which was a shock to them, they were all men and I mean it was a big shock my first day and it was kind of like oh my god you know what I got myself into and a lot of people, everything was different, everything was strange, I know there was a lot of things we never heard about or were told, but you know other than that.

I like the job I actually did, yes, I fell in love with everyone because they adored me, little McBay used to take me around the wards and every time he made his rounds around the wards he would take me, he was like a companion. a friend I could talk to could understand things I'm a person when I started there were patients, then they became residents and then they became clients. I think that's what happened to the people who work there, they're always just kids. I always thought that if you treated them with respect and treated them like you would like to treat your own child, you know, even though they allowed you to spank them, I felt like I was doing something that was helping someone, my little son, my little kids, I had all the kids in my training program and they were so adorable.

He had these two boys who were twins, oh my gosh, his twins were Tony and Alex. I'll never forget them at Pennhurst, the people we knew and you know who worked there and who worked with Bob. and they showed great affection for him, right, um and we could see that affection and we saw that they were good people and how then do you explain the bruises and the conditions and and and and they called the rest of us idiots, all those kinds of things that could not be You even had a smile on your face, they told me that with that smile on my face I was great, it was GR.

One time one of the nurses was bothering me and I said, Miss L, you better stop bothering me. She, damn it, I said. she said yes, I said stay on B for me, you are going to use that bucket, let me tell you she stayed on B, I picked up the bucket and threw it straight at her, she never bothered me after that, no she did. That is a true factor and I approached my w she4 as if nothing had happened no I don't like being swept I said would you like to be swept all the time they said no I said then why are you doing it to me there were many days when I worked at Pennhurst I didn't want to go and there were a lot of days where I was afraid to go to work but you needed a job and you went, you know, I went in to get something useful in the refrigerator and he followed me and pulled a knife on me and said, you know what? he was going to kill me and this and that and I convinced him not to do it, he was a big guy, I convinced him not to do it and then until that time, the other people had called security and they came in and took him down and, of course, Ed in shackles and a straitjacket, uh, very hard on him, which I didn't like, but they were just thinking about me, there were only 600 employees in Pennhurst and there were over 3,000 residents living there and to say no. it was a nice place is, to put it mildly, those kinds of proportions can provide basic care and not even do that well and one of the things I will always remember that while I lived there were shower programs in which 30 young people lined up against the wall completely naked and were taken one at a time to a room where there was a drain in the center and a large hose coming out of it. and two employees in raincoats, yellow raincoats, yellow hat, yellow jacket, yellow pants, they were washing people with a hose and one person soaped the person, the other person hosed him down almost with a kind of fire hose .

I remember a situation and we went. There they would bring lunch and everything from soup to nuts to dessert to whatever was all thrown in a bowl and that's how they fed them and you had 10 minutes to feed them and what not. Get off in 10 minutes, they didn't understand. I remember talking to the instructor who was guiding us. If you plan to put me here, I'm leaving because I won't do this. I can't do that to people. Human beings have feelings. They had mice, rats, cockroaches in the food and all that. There were mice in the bread.

Those who didn't know anything took it out from the end and ate it. Two girls took two SLI of bread. he put salt and pepper on it he ate it and he got sick well I never ate there um but we had dieticians according to their needs and according to their problems um Sandra never never had any kind of problem with nutrition they got exactly what they needed. I guess I wasn't allowed to visit Bernard for 2 months. She lost 30 pounds during that time, if she hadn't been chubby, she probably would have died, but she wasn't eating and had lost 30 pounds while you.

You're in Peners, has anyone ever visited you? no mm no, no, no, I don't want to, I don't want to get into that conversation, but um no, I could understand the families that never came if you had a child and their child died when they were a baby, that was heartbreaking, but it was an anguish that in a way ended if I had a childin its 2,800 children. It is also often difficult to find overcrowded cages at the zoo when it comes to accommodation, but it is quite common. finding residents clustered in small cabins at Pennhurst after comparing Pennhurst Zoo one must get the impression that society's animals are more important than society's children from the look of things one must wonder I was a young reporter About 28 years old I was on the street.

For less than a year I met a guy who did public relations for the main Junior Chamber of Commerce and this guy was telling me about this hell. I told him that if one tenth of what he told me was true, I would do a story, but the question was how to get in, so I confronted the president or the doctor in charge and said if he would allow me to expose this because it would help the situation because no one seemed to care or I would spend every day standing outside the gates of Pennhurst telling people what I saw inside and asking why I can do it.

When we entered, this is a state institution that we are paying for, why we can't see it, it decided that it would be better to let me enter with the camera and so we entered, many of these children have always had without the there was a lot of crying, there were many tears every day, there were many moans and moans, it was a question of that's how it is you know uh it affected me it affected my team uh to the point where you know, a cameraman after three days was able to say: I'm not going back in there.

I can't go back and watch this again. I lost a soundman the next day. I had to replace them. It was very difficult for us because we were not used to seeing pain and agony every day, we were not used to seeing people who do not care about others, you walk into a gigantic room, there are 80 metal cribs with children of 6 months. up to 5 years old, half of them are chained, they are all dirty with feces and there are two people, two assistants taking care of them, they are locked in a cage and the only reason those people weren't out of that cage was because they couldn't .

They couldn't walk and they couldn't walk because there was no one there to put a mattress on the floor so they could learn to crawl and then walk, so they were confined for years unable to walk, their legs were so thick around the thighs. Bill turned on the cameras and had five nights broadcast at 6:00. Every night had five nights of exposure of what was really going on at Pennhurst and it was unprecedented and it was deeper coverage than The Will Brook situation on Staten Island with Toaldo Rivera was more intense and got Hubert Humphrey the last night will speak about the plight of Americans with mental retardation.

Institutions are sometimes pitiful, just pitiful, shameful and we just can't. I don't tolerate that John, it's not right, we just can't look in the mirror when you know what happens in some of these institutions. I don't know what your particular problem is here, but let me tell you if it's not good then. It is shameful because this rich country, this great country, and I must say it is very large and very rich, can afford to take care of the youngest of these little children suffered by Bill Baldini. That was brutal. I don't want to be rude, but I felt a lot it was all biased, it seemed to have a bias, they talked about the clients that were hurt, they never talked about the AIDS that was hurt, bad things happened, you know, there were things that happened at any time.

A bunch of people are going to have some bad apples. I don't remember a single incident with the media publishing anything positive about Penn and I felt bad about that because, in fact, I lost a lot of respect for the media because of that I currently don't get a newspaper, once they wrote about Penar , there was a photograph of Bernadette and she was lying on the floor and I said, oh, poor Bernadette, she has to lie down on the concrete floor. Bernardet loved. to lay on a concrete floor, you know she's been here, she'd probably be there when she was little, she'll be in the lolium, laying on the CU floor, it's soft and cool, so I don't know, I'm not defending Pennhurst.

I'm not saying she was great, I'm not saying she was terrible, uh, she did the job, she did the job, she was the best there was and at least there was something that we never got a response about anything we did. like we got in the Pennhurst situation, people were up in arms, they were calling us, they were writing to us, they were begging us to do more, they were begging the politicians and that's what really got the ball rolling. I filed the Pennhurst case on May 30, 1974. 20 days after my 26th birthday, the day the case was filed, I was sure it would be over quickly.

I couldn't imagine that the type of injury we were talking about would be something the state would want to display in a courtroom and I thought we would resolve the case very quickly and I was wrong: what they wanted in that initial lawsuit was to fix Pennhurst, keep Penhurst open and improve it, which is what I also wanted, it's what we all thought was best after I brought the Peners case. Tom Ghul, on behalf of the Pennsylvania Citizens Association, intervened in the lawsuit and joined our case along with the department of justice. Little did the Pennsylvania Arch know when they came to me that I had experienced the institution to my eternal shame. uh, I am looking to help my mother to somehow accept this very difficult experience, uh, full of guilt, pain and many other deep emotions for sending her youngest son to the institution.

I managed to happily say, well, Pennhurst really does look like a college campus. Um, little did I know then, although I came to understand how silly that observation was. The retired PA Association assistant joined the same lawsuit and what really happened: They took the lawsuit away from Halderman and she turned it into closing the institution where the lawsuit was filed. on behalf of T Le hollerman and others who were named and all the residents of peners and I submitted it in part after reading and learning in the records about all the injuries that T Lee halderman suffered at 400 in the morning when no one was watching When she fell, she was found 2 hours later bleeding profusely from her mouth.

A staff member obtained permission to remove what appeared to be a tooth from inside her mouth. It turned out it was part of her broken jaw. The Pennsylvania Citizens Association took End Pennhurst as its purpose to shift public resources that were being spent there detrimentally into the community and create with those resources a system of high-quality community services that would enable the people of Pennhurst and others receive community services that would sustain them productively. Life in the community. The case went to trial for 11 weeks in the spring and early summer of 1977. At that time, a parent described how a staff member picked up a child in front of a parent of another resident and threw him. a door on the other side that landed on all fours in 1976 2 years after the lawsuit was filed one resident was tied up with restraints for 241 hours uh from August to October another resident tied hand and foot for 690 hours for just one month we had evidence that staff member saw someone being raped in the institution did not interfere until the rape was over they did not listen to us.

I couldn't understand why they didn't talk to some of us, we were the ones who were living with it, you know? I could have said that my daughter was not abused, she was not neglected. We built what has been called the twin study. Not literally twins, but having the disability configurations of the ages in hand. The experience, uh, uh, etc. people from Pennhurst then we matched each person from Pennhurst with two or three, sometimes more, people who were successfully living in the community and receiving the services that allowed them to do that. One woman, her son had recently moved from Pennhurst to the community and she testified as she witnessed what her son was like now compared to what he was like in Pennhurst and she described, through tears, going with her son to a nightclub, dancing and have a drink, and he was living this incredibly rich life now and she was just overwhelmed by how much his life had changed how wonderful things were for him and she just wanted them for everyone when the case came up it was randomly assigned to Judge Raymond J Brck Judge Brck was the most unlikely judge to rule in our favor in this case Judge Brck was a conservative Republican, a very kind and good-hearted person, but politically he was not very in favor of the courts interfering with government activities, but as time went on we learned that he appreciated what the case was about, at the beginning of it he asked. an expert witness as the expert left the stand, perhaps we need a Pennsylvania statewide institution?

I know Pennhurst maybe should be closed, but maybe we need an institution, the expert explained no, finally, towards the end of the trial, Judge Brick said one day from the bench maybe it's time to rattle the death nail for the mentally retarded institutions I listen to the state I listen to blah blah blah, so I raised my hand and said, your honor, life sucks, I said, if you're interested closing the screen, why don't you take some to your home and take responsibility? Judge Brck ruled in 1978 that no one should live in the institution that people's constitutional rights were violated by the very existence of Pennhurst as a place to incarcerate people. and from then on the case took unexpected turns, of course we were on their side here because we told the truth, many appeals came up, we felt that Pennhurst was not that bad and we were very upset with the state and that's why we decided to organize ourselves and find an opportunity to intervene and we followed it all the way and finally got to the Supreme Court of the United States.

The first case that came to the Supreme Court did not concern any of the eight or nine reasons that Judge Bradrick had used for his In his original opinion, he affirmed his orders and decisions based on the Developmental Disabilities Rights and Services Act 1975, as Judge Brck said it was not that he had given them enough reasons to support his orders, but they managed. find another and it was at that time, already in the mid-1980s, that the state of Pennsylvania finally agreed to close the institution and then no one with mental retardation should live at Pennhurst again.

It took almost a decade for Penhurst. to close from 1978 until its closure in 1987, Penhurst's final agreement with the help of a judge who mediated our discussions was that Pennhurst would be closed, everyone in Penhurst would move to the community they thought, oh boy, we'll move everyone out to the community that We have the community, we will get everyone out, the community was not ready and is still not ready today, uh, and what happened with the Pennhurst closure was really tragic, no one tells me anything, no one told me how to open an account banking, no one told me.

I how to pay R no one told me any of that I did it on my own I did everything on my own I know the social workers why having a social worker they wouldn't even know about a rent reimbursement to rent the staff the staff they had in the group homes, I don't know what it's like today, but in the beginning the group homes that paid were nowhere near what people at Pennhurst were paid, especially the salary and benefits that Pennhurst employees were getting, so you just wondered exactly exactly how good the staff was, you know, some of the case managers start right out of college, they haven't had the experience, that's part of the problem, if they paid more or could do it, they could get more people who have had more . experience and more training.

I wonder if they had the system of checks and balances that we had and I just, sometimes I don't like to think about that when I hear stories about some of the group homes and things that I think maybe you were better off in a larger environment where there were more people. All I know is that I still feel like we should have done a better job of researching what their needs were going to be. I think the assessments were inadequate and very often that is the case today, a lack of proper assessment of what the needs will be and the availability of support services.

I think the state just wanted to, they've closed a lot of other institutions since Pennhurst, they just wanted to be out of reach. What I mean is a little bit of business outside the business of caring for the mentally disabled. I think a waiting list of 23,000 in this state is horrible. The average person doesn't know that that has grown and grown when we had 500, we thought about it. It was bad years ago, but there are more and more people at home because there are not enough funds to finance the community as it should be. There are providers who are dropping out because they simply can't handle it.

It was a very sad situation, a very sad situation because I mean. Just because I lived there, I lived there and I really missed it, the case has been cited every single one of its opinions almost countless times across the country because whatproceeded from Pennhurst's decisions beginning on Christmas Day that followed The original orders of 1977 brought enormous attention and momentum to the movement to create community services and close institutions nationwide. It did make a difference. I know this because I was national president of the voice of the movement. There were attempts across the country to close facilities. many of them did, ah, let's see there are some states that don't have any anymore and there are some states that are reopening, they are opening their programs again, so we are still uneasy, the whole situation is uneasy, we have learned a lot. in the last

decades

of the 20th century and it is that

understanding

of the capacity of people with mental retardation, no matter how severe their disability, to participate in a real way in the community and contribute directly and indirectly to the life of the community that is The learning that underlies the revolution that the Pennhurst case has brought for people with

disabilities

and their families and for our entire nation, as we saw in the experience in the United States and is happening in countries around the world, we finally discovered that there are better ways to support people and their families instead of segregation and isolation.

The history and lessons we learned in the Peners case are lessons that many of us still need to learn today. Let's just say. I'm trying to get a job, I filled out an application on Township Line R wah and I turned around and they asked me what school you went to. I said, I say spring for lying, they said penners and then everyone freezes, it's like really mummies and me. He said: Excuse me, there is nothing wrong with me, why are you doing this? So I came back and asked him hard, hard, I don't blame the girls, but you know, I blame the people who know, but I miss Penners. uhhuh, more than you ever know how you feel about the rights or non-rights of people with disabilities.

I just don't think you could have visited that institution and thought that yeah, it's okay for these people, it wasn't okay for anyone, not for anyone. It's not the best way for people to live, but if they can't take care of themselves, they have to be taken care of, there's no doubt you can't see them on the streets, living as if they don't live. I came to understand the injury and the conditions were not so much a function of human will as when you bring people together in such density in an enclosed space, that's what happens, whether it's an orphanage or a nursing home. or if it is a segregated institution for people with disabilities.

I feel very satisfied with what has happened over the years as a result of the decision P. One night, I think it was in 1979, Marjerie, my wife, and I were hunched over and I wanted to add my wife so she wouldn't think that I was talking about someone else my age, but the phone rang and I answered the phone and a very serious voice said: Judge? Rock. I said yes, yes, what do you want? She said: Today I learn how to dial the phone and you are the first person I called to say thank you for getting me out of Penhurst.

I have a job. I do not want to get back. I don't miss that place, no sir. "I'll never get involved in another one," I told one of the employees here. I told him I don't want to go back to a place like a pen or a nursing home. It's amazing to think about what we went through in this century, uh, and in the century. before and the Jim Crow laws and the civil rights movement and the Voting Rights Act and all these things, the Civil Rights Act, we've been through all these things and yet it's still the only group where I can think that you can see them in the look and say, well, we have studied you, we have analyzed your situation and we have decided that it would be best for everyone if you were to stay separate from the rest of us, that is the essence of segregation and do we still do it? ? saying you have to stay separate from the rest of society, yes we are, we are still doing that, they tried to close the mall with P the pen, their case and we still have institutions and we still have five here in this state, we could It's not It is possible that today we can take care of baptizing Sandra at our age, it is simply impossible because I also have to take care of my husband, who is disabled, is in a wheelchair and I may be wrong, but I think my daughter is the only one that she ended up in a private facility and she ended up there because not because I refused, I did look, but something was always missing, there was no openness about the costs and what it was going to be, which is still the case today.

I convinced a lot of people that community is the only way forward. I still feel like there are some that won't make it and I'd like you to take a look at them. I really like that people see serious disability, most people just don't see it. They know it, they've never seen it, they've never been involved in it. I found my mother. It took me a year to do it. She brought him a red rose and a small white rose. I lowered the rose and said mother. this is patina she said I remember you patina but she said I'm sorry wife for what I did to you I said mother that's the past this is the future you look at the future not the past oh boy let's see come boy and 1969 a A good fall brought us together and We walked away in the car and he used to come and see me, we used to go to the canteen, back then boys and girls weren't allowed to be together, but everyone found out anyway.

I really wanted it I really wanted it I did it I left there on April 12, 1971 I got married on August 3 of the same year here we are 35 years together casew workers sent would never make it for a marriage that was wrong to be for each other that I will regret it if I get married, I won't regret it at all without her, well, forget it, oh boy, we kissed. Father of the police officers they asked about, I told them we are married, what did they say then? Well, I confess it. I tell you my sins. I made every s in the book, but I did it.

Minister, as you know, and I tell the judge what sins he has committed. Violet. Well, I just got them talking. She makes him talk. You know, this is Rolan Johnson speaking. I've been knowing he had AIDS for 4 years and it was a girl, she had been sexually abused by me up there and that's what happened, that's how I got it. She was no more than five or eight years old. I couldn't. I don't understand why these loud things happen as I tell everyone please don't send anyone to place any child or adult back in an institution because it is not a place for them.