Institutions to Independence

Anita: I think you should do it the way that works for you to be heard.

Richard Brown: Before my life looked like hell. I have had much more freedom over my life now as opposed to when I was in the hospitals.

Voiceover: People need to know what their rights are. If they don't know what their rights are, then I don't know what they're going to do.

Mary Raasch: Back when I was in high school, my mom told me that I couldn't achieve very many things. Don't tell an adult with disabilities they can't do something because they will try to do it.

[Laughter]

Mary Raasch: They'll try it.

Voiceover: Institutions to Independence, providing a voice to Minnesotans with developmental disabilities is co-production of Lutheran Social Service of Minnesota. On the web at lssmn.org. And TPT's Minnesota Channel. Support for the program has been provided by Fredrikson & Byron, P.A., The Minnesota Governor's Council on Developmental Disabilities, and Government Training Services.

Unidentified Woman: I wonder what kind of flower is that.

Carol Robinson: I don't know hmm.

Unidentified Woman: Yeah, I like that one.

Carol Robinson: When I was growing up, I lived in foster homes. To me, I didn't have a lot of rights. Pretty much been told what to do, how to do it. I started learning about we had rights and to learn speaking for yourself, otherwise I always had people just step on me and I never said anything back.

Rick Cardenas: We're down at Hastings a state hospital for many years. They've closed down, other; leftover is this area where individuals who had passed away in the state institution were buried out here with numbered markers without a name. We found them here at Hastings, we found them at Faribault, Cambridge, Fergus Falls, Willmar, all over the state, wherever there were individuals with disabilities who were put into the state institutions. There were grave markers with numbers.

Carol Robinson: Can you imagine living in an institution, when you die, you're just buried with a number, nobody cares how, you know, what happens to you. And it seems like you're just kind of put away someplace.

Richard Brown: March 1949, I was admitted to Vocational Hospital. In January of 1951, I was moved to Victory Hospital. In June of 1951, when I was 5 years old, I was institutionalized in Faribault. Finally I moved out of Faribault in 1970 and I was so happy to be moved out. I sure like being out on my own.

Mark Peterson: When I was 8 years old and in the fourth grade, one of my classmates was a young girl named Carrie. Carrie was a person with developmental disabilities. She had poor language skills. What I remember most about her was the fear in her eyes. She seemed to be so frightened by the pace of life at school, and she just wasn't comfortable, clearly. And then one day she didn't come back. Back in those days, I think what was normative, was persons like Carrie were taken to the state hospital.

Luther Granquist: In the early 1970s, Cambridge State Hospital was not a happy place. It was understaffed; there was very little going on in terms of recognition that the men and the women who were up there had the capability to learn and to grow and develop.

Luther Granquist: I went there on a Sunday morning in March of 1972, with one of our expert witnesses, and came into a day room that had mats on the floor, people with extremely contractured limbs lying on the mats. There had been very little at that time in terms of effective therapy for those people. Very little in terms of physical therapy available. And they paid the price. Most, perhaps all, of the employees at Cambridge would have said, no, this is not the way it ought to be.

[Guitar playing]

Bonnie Jean Smith: I can dream for my child. I know I don't have to settle for what's there.

[Guitar playing]

Bonnie Jean Smith: My children have always felt empowered. I never told them they couldn't do things other than, you know, break the law. But I've never told them they couldn't do, and if you ask my children, what autism meant, they would tell you it means, I learn the same thing everyone else does, just differently.

[Guitar playing]

Mary Raasch: I didn't know much about self-advocacy before I started working at Merrick. I learned about our rights that we have. Self-advocacy is a way to respect yourself and respect others and to stand up for your rights, to know your rights so you can lead a better life.

[Music]

Luther Granquist: The 1860s, there was nothing. Minnesota was largely still a frontier state. There was medical practice that was limited. Social services as we think of them today were nonexistent. Minnesota opened the first hospital for the insane in St. Peter in 1866. There were about 100 children that were admitted, but about 50 of them were in the categorization at the time characterized as idiots or imbeciles.

[Music]

Rick Cardenas: Individual families would go in there with a child with a disability, they would be advised to drop their child off and leave them and forget about them.

Mary Raasch: I always think about that. That was part of one of the presentations that Partners in Policymaking. In the institutions, imagine anything you wanted to come up with, anything that you could have thought of, imagine, they've done that to adults with disabilities and I think it's horrible.

Mark Peterson: I moved out of Faribault in 1970 and I was so happy to be moved out. My life is okay now, after I moved out of that dump. [Laughter] I think I have a better life than most other people do. Some days were happy. Other days were not as good. But I did keep on living my life. I haven't studied art. My art style is my own creation. When I have a camera, I go outside looking for great pictures. My paintings are based off some of the pictures I took.

Maureen Rosacker: Richard is doing very well economically by selling his paintings. It's a way to break down stereotypes and myths, and, my goodness, he's adding more beauty to the world than a lot of us are.

Maureen Rosacker: We have a supported employment program where we have about 100 people that are working in the community. They want to make a difference. They want people to know, that they have abilities, not disabilities. They've been told so often that they can't do things. But they can.

Interviewer: Do you think it's hard for people with developmental disabilities to convince employers that they can do the job?

Marnie Manning: I think so.

Interviewer: Why do you think that is?

Marnie Manning: Because they don't think that they'll be very good at it.

Interviewer: So, what would you say to employers, who think like that?

Marnie Manning: Don't look at me because of my disability. Look at the work that I do.

Interviewer: How long have you worked here?

Marnie Manning: Three and a half years.

Greg Hoyt: I hope it's another 30years. In terms of our culture as a company, it's been transformative. I've heard each of the folks who work here tell me that their hope and their desire is to work here for the rest of their lives. and it's not necessarily because I'm a good guy. It's not because it's a good place to work. I hope it is. But it's because this job is so meaningful.

Marnie Manning: I'm a normal human being. Just born with a challenge.

Interviewer: What was it like the first day that you came to work?

Alex Ashkar: I was happy and excited. Just happy.

Interviewer: Is this the kind of job you'd like to keep doing?

Alex Ashkar: Yeah.

Interviewer: What do you like about this job?

Chris Nimtz: The pay and the smell of coffee and it allows me to support my girlfriend that I've been dating for two years.

David Houghton: What they do, they do extremely well. They love their work. They're excited about it. They come to work every day with a great attitude. I remember my first job site was at Burger King. And the kids in high school, the minute they walked out the door, they changed their clothes. My guys wore their Burger King uniform the entire day, you know. They were just so proud of the fact of that's where they were working.

[Music]

Luther Granquist: In 1925, Minnesota passed a law that authorized the state board of control to sterilize feeble-minded persons who had been committed to the guardianship of the board of control. As a practical matter, consent by the parents or spouse was required if somebody wanted to get out. This whole sterilization process arose out of the eugenics movement and it rose out of a concern that feeble-minded persons were a threat to society. The superintendent at Faribault in 1928 said, you know, here at Faribault, we can make the lives of feeble-minded persons as satisfactory and complete as the most advanced methods can make them, whatever that was at the time. But, he added, we must see that they do not propagate.

[Music]

Tim Nelson: Albina Hammer, in 1923 was working as a nurse in a state institution. And she just felt like there had to be a better way for people with disabilities to live.

Woman: Where's the bread? Can you find the bread in the refrigerator?

Tim Nelson: She decided to start a small school for people with disabilities in Minneapolis.

Luther Granquist: Hammers residence existed, Laura Baker home existed in Northfield, Roseau children's home, I believe, had opened. There were a limited number of community facilities.

Cindy Johnson: They told me she'd never walk. She'd never talk. She'd never hold a spoon or a pencil. And the doctor told me to get an abortion. And I didn't. And she was born with disabilities. They told me I could; I probably should put her in a home.

Cindy Johnson: Jenna was she fortunate when 90% of people with disabilities are not employed, she's been working at Target for almost 11 years.

Jenna Johnson: I like to relate with other people. I do returns. I like getting paid every time. I like being number one. Learning how to do things on my own.

Scott Prellwitz: I work at Godfather's Pizza. I do dishes and busing. I got my sense of humor, attitude. Nice person. Have friends.

Mark Peterson: Scott is a great example of how persons with disabilities can successfully live and work in community and have real jobs and make real things happen. And who can contribute to the well being of life in town.

Scott Prellwitz: I'm in Boy Scouts. We do a lot of stuff like camping and boating, fishing, hiking, biking.

Mark Peterson: Scott is making his own decisions about when he goes into town, what he shops for, when he shops for it, what stores he goes to. Freedom to make decisions is probably the most basic. It's my hope that the story of Scott becomes normative. They can not only live in the community, but be active parts of the community, to have real jobs where they're paying taxes and making decisions about their own futures so that their own hopes and dreams can be realized on their terms.

Ray Stewart: What you're seeing now is what is known as electrode convulsive therapy.

Voiceover: The options in the early '50s were the state hospital.

Ray Stewart: Another type of shock treatment is insulin. And here we see the doctor injecting insulin into the vein of the patient to induce a coma. The nature of the mechanisms by which insulin and electroshock therapy bring out improvements are as yet uncertain.

Voiceover: The institutions were basically warehousing human beings. Individuals lived there, many of them didn't have their own clothes. They were in very poor shape with literally hundreds of people living in the same room in some instances.

Gerald F. Walsh: Our citizens, I feel, are unaware for the most part, that conditions like these we're seeing now exist. I'm confident when they do know, they will insist on improvements. These people are sedated, drugged, watched and they have no hope for the future under our present plan.

Gerald F. Walsh: Children grow to adults, beautiful children, lovable children. And they're left unloved and lonely. This, in my opinion, represents the saddest picture that I think I've ever seen in the state institution. For the lack of human warmth, she's cuddled up against a cold brick wall and this is about the only comfort she gets so often day in and day out.

Luther Granquist: The differing factor in the early '50s was in part the efforts by governor Luther Youngdahl. He took a careful look at what was going on and said, this is simply not good enough. And he went on prime time radio to tell the people of Minnesota about that. He was, in many respects, a preacher on this issue. A major factor in the change in our system of providing services for people with developmental disabilities has been the association for initially the Association for Retarded Children that started in 1950 right here in Minneapolis.

Steve Larson: Parents were very interested in creating more opportunities for their children that lived at home. They wanted to expand the opportunities for individuals, improve some of the institutions that were there, and eventually get their children access to public education and other services that they were denied at that time.

Mel Heckt: We did a lot of legislative work, trying to improve both community services, get more of them, and also improve the institutions.

Luther Granquist: Much of the work that you would normally think would be done by some sort of government task force was done by the A.R.C. And in 1965, they did a mammoth survey of staffing in the state institutions that was presented to the legislature.

Mel Heckt: I wouldn't say it was too easy. I know one time I gave a talk on the radio and I said Cambridge was such a sad shape that you wouldn't want hogs to live in the place. And the legislator almost drove off the highway when he heard that.

[Laughter]

Mel Heckt: When I found out later.

Steve Larson: At first the A.R.C. was supporting the institutions from the standpoint that the conditions were so poor that they worked at the legislature to try to get additional resources put into those institutions. But eventually in the 1950s and the 1960s, that started evolving to trying to create alternatives to the institutions. And trying to get individuals out of the institutions.

Luther Granquist: There was certainly an attitude that still pervaded in the early '70s that for some of these folks, there was simply nothing that could be done.

Voiceover: I was a lawyer at the legal aid society in the early 1970s. A man named Richard Welch came into our office and said, my daughter, Patty, is at that hellhole up at Cambridge, and I want you to do something about it.

Voiceover: In March of 1973, a colleague of mine was touring the facility, and they went in to one of the buildings at Cambridge and my colleague, Neil Mickenberg, said, let's open every door of the place. And he said, let's go down and look at the exclusion room, which is down in the basement. The staff person who was on, said well, there's nobody in there. And Neil said, let's look anyway. And there was somebody in there and the day staff didn't know that. Didn't even know when the person had gone in.

Voiceover: The fundamental wrong in the state hospital system was the pervasive neglect of the human potential of the men and women and the boys and girls that were sent there.

Luther Granquist: We sued the commissioner of public welfare and the administrators of six of the state hospitals, we had a very straightforward theory. If you lock them up to take care of them and you don't, it's the denial of due process under the constitution. And you ought not to lock people up if there's a better alternative way to deal with them.

Cindy Johnson: It isn't about beds and funding. It's about people. Real people. Partners in Policymaking is, it's empowering, training parents and self-advocates about the laws, about life, about how things used to be and how they are now.

Bonnie Jean Smith: When you go through Partners in Policymaking, you have no problem asking the right questions. You challenge certain things.

Cindy Johnson: We have a choice in this and we need to learn how to stick up for ourselves.

Mary Raasch: As an adult with disability, I think people don't always get that I have true feelings. I have feelings that I don't want to be made fun of. Adults with disabilities, we have the right just as much as anybody else.

Colleen Timbers: People develop the confidence and the resolve to know what they valued, what were their passions, what are their passions, and then what goals can they set for themselves and how they can lead more self-directed lives.

Colleen Timbers: Coming out of the state institutions, a lot of individuals didn't know what their rights were in terms of voting. In 2008, during the presidential election, we had 48 new voters that voted for the first time. Some of these guys are 30, 40, 50 years of age and voted for the very first time. And had been told in the past that they could not vote.

Mary Raasch: We have the right to dance, vote, go to clubs, go to the movies.

Voiceover: You have the right to dance.

Mary Raasch: Uh-huh, I have the right to dance, if I want to…

[Laughter]

Colleen Timbers: Well, then what comes with those rights is once you vote, you also can serve on juries. So, we've had some individuals that have been summoned for jury duty. And people have said, well, no, they can't do that. Yeah, they can.

Karen Loven: My rights were never taken away. I teach people at my building, I teach them at home. It's just… I feel that's my right.

Judge Donovan Frank: They finally get the promise that the constitution makes for all citizens in this country of equal opportunities, equal justice, equal access. We did a presentation to the Federal Bar Association, saying as we talk about unrepresented minorities, the largest group, in our opinion, are people with disabilities, it's time to educate.

Cindy Johnson: Jenna requires 24-hour care whether she lives in her own apartment or she lives in a group home. She needs 24-hour support. It's got like a little lift thing. Jenna is empowered to make her own decisions.

Interviewer: Do you feel like you live independently?

Jenna Johnson: Yeah.

Interviewer: What does that mean to you?

Jenna Johnson: It's actually fun to do the, things to live on my own.

Steve Larson: The more people we keep in their own homes, the better off we are. That's what people want. They want to stay in their own homes or stay in their own communities. And we now have the ability to do that, both with the services that we provide, with technology, with a variety of things. So that only those that are in the greatest need… need to move out of their homes. We've been advocating for people to develop programs ands that are customized to their individual needs, trying to get people fully involved in their communities.

Voiceover: We have an alternative within our community.

Man: Hey Jen come on.

Voiceover: Directive supports. We're able to do alternative day programming. Some days she works, some days she volunteers, but two days a week she has Our Choice. That's a group from 10:30 to 1:30 for social activities. They get to do what they want. We don't tell them what to do, it's their choice.

Cindy Johnson: So when you talk about self-directive, I mean, Jenna kind of has the best of day, and the best of residential and, best of community and a super dog. So what more could you want?

[Laughter]

Steve Larson: We've been able to get all people with developmental disabilities out of the state institutions, and the last one moved out about ten years ago.

Mark Peterson: Certainly over the last 40, 50 years, there's been a great sweep of change for persons with developmental disabilities, from living in the state institutions to living in community.

Bonnie Jean Smith: No one knows your child better than you do. I ask him, what do you want to do? What is it that you want to do? And then we look and see if we can get there.

Donnie Smith: I'm an honest person, respectful, even if they don't respect me back, I'll still respect them, regardless.

Bonnie Jean Smith: He wants to write his music and sell it. And he's good.

Donnie Smith: Mom gave me two DVDs; one of them was the Jimi Hendrix Experience and Eric Clapton "Friends."

Bonnie Jean Smith: When my daughter gave me my granddaughter who's now 2 years old, Donnie took an early childhood class so he'd know how to work with his niece.

Voiceover: Young people with disabilities are benefiting from the fact that we're not viewing them necessarily as persons with disabilities, like we've had in the past, they aren't suffering from those labels but they're dreaming of the lives that they have.

Cindy Johnson: Why should I tell someone how to live their life? She gets to decide when she eats, what she eats, what days she works.

Steve Larson: Governor's Council on Developmental Disabilities did a survey about three years ago that compared Minnesotans' attitudes from three years ago versus about 40 years prior to that. And there had been a substantial change. Because individuals with disabilities are now fully integrated into our society, they're in our schools, they're working, they're riding the city buses. People know individuals with disabilities and now can respect what they can achieve and what they can contribute to society.

Mark Peterson: Part of our vision for the future is to simplify a very complex system and then to get the money directly to the individual. We know that that saves money. We need everyone in our communities to be contributing to the well being of the community. And persons with disabilities clearly can make important contributions. It takes all of us.

Carol Robinson: I want them to know that I'm a person, I'm human, I have rights and try to get along, be respectful to them, they be respectful to me. That's how I see it.

Richard Brown: I feel so sad other people don't have a chance to live their own life like I do. I make my own choices. I can advocate for myself and I'm happy I can do that. I'm not saying that disabilities are a bad thing. I know that through my disability, I had learned so much and met so many amazing people. I just wish that others with disabilities would be able to have the same opportunities that I have. I am calling the shots these days. I like my life now.

Donnie Smith: My future is to get married and become a musician still.

Scott Prellwitz: My dream someday, a house.

Mary Raasch: Wow my future is big. I'd like to start my own self-advocacy business. And the future is lookin' good. Dreamin' big.

[Laughter]

Mary Raasch: People with disabilities don't want to be treated awful. Don't treat them differently. We can do whatever we would like to. We can dream big. And we can achieve our goals. I have, and I'm still dreamin' big.

Voiceover:

George McCormick: Institutions to Independence, providing a voice to Minnesotans with developmental disabilities, is a co-production of Lutheran Social Service of Minnesota, on the web at lssmn.org, and TPT's Minnesota channel. Support for the program has been provided by Fredrikson & Byron, p.a., the Minnesota Governor's Council on Developmental Disabilities, and Government Training Services.