The following is an edited conversation that aired on SDPB's In the Moment on Monday, May 20. You can listen to it in its entirety here.
Lori Walsh: Welcome back to In the Moment. I'm Lori Walsh. The new SDPB documentary Leaving Redfield explores the progress from forced segregation of people with intellectual disabilities to a greater focus on all people living meaningful lives as they define them. The program premieres on SDPB on June 10th, and it looks at the deinstitutionalization of the Redfield Hospital and School, will start with the early 1900s through the current day. Writer, Paul Higbee, joins us from the Sue W. White Studio on the campus of Black Hills State University. This is a powerful documentary, and it involved talking to a lot of people, including people who lived in Redfield who were institutionalized there. Take me back to the genesis of this project and how you first saw it taking shape.
Paul Higbee: Well, this was a field I worked in through Black Hills Special Services out in Sturgis. I remember the days that people were leaving Redfield, and many other institutions across the country, and coming back to their hometowns. I was there trying to help set up housing and case management. Worked with a man named Bob [Markvee 00:01:24] who was right in the middle of everything too, both on the east side of the state and the west side of the state. It was about seven years ago. He said, "You know, those people who came out of Redfield, they're not getting any younger. There're a lot of them in their 70s now. They've got remarkable stories. Maybe we should think about interviewing them, so their stories are never forgotten."
So about seven years ago, we started driving across the state, interviewing everybody we could who had gotten out of an institution. And the interviews were just great. Ryan Phillips was my cameraman and soundman. We got some funding from some foundations to do that with the hopes that someday we could organize it all into a documentary.
Lori Walsh: We're going to hear some voices from the documentary, and the first one I want to play is Mark Samis. He was in Redfield at the age of 15, and he was sent there because he was having trouble keeping up in school. Here's a little bit of him just talking about when he left and how it made him feel.
Mark Samis: I had my freedom right after Redfield. In the morning the day I left, January 8th, 1974, that's when I got my freedom back. I could truly live free like Martin Luther King said in August of 1963 before the Lincoln Memorial, "Free at last. Free at last. Thank, God Almighty. Free at last."
Lori Walsh: That's a powerful memory that he has of leaving. Talk a little bit about why someone would feel that way. What were the conditions that they were in that would make leaving that big of a deal?
Paul Higbee: I think some of them didn't know that they didn't have any freedom until they left. Mark did. He was an advocate for himself very early on. But then when you get out of a place where you have to be really behind walls. You can't go into the community except with supervision and other people, and you look back on that, it's like, "What on Earth was going on to me?" One of our characters says it was a lockup, "I was locked up." Certainly, times changed over the decades so that conditions were better at places like Redfield. It's a word people don't like to use, but there certainly was a time where it felt like people were kind of warehoused there. And that lack of freedom is what Mark latched on to and many other people in other words saying, "I couldn't go where I wanted to go. I couldn't be by myself. I couldn't decide what I wanted to watch on TV. I had to do everything as a group."
Lori Walsh: Let's go back to the beginning in the early 1900s. How did this begin as a facility? What was it originally called? What were the original intentions?
Paul Higbee: Well, for a lot of years it was called The Home for the Feebleminded, or The Home and School for the Feebleminded. It was like other institutions in other parts of the country. This wasn't something South Dakota invented. Eventually, 1200 people lived at Redfield. It was following the model that had been established nationally. We might've had a little bit of an advantage in South Dakota in that our numbers were not as overwhelming as they were some places. I mean, there's no doubt one of the things these institutions did was keep people who had intellectual disability segregated from the rest of the citizens in their state. And so there's always kind of a mystery about these places, like who are those people who live there? Are they dangerous? Our popular literature, including John Steinbeck's Of Mice and Men, painted a picture of these being dangerous people. In Mice of Men, Lenny kills somebody because he doesn't know his own strength. And so a lot of people said, "Well, there must be a reason why we're separated from that group of people."
The other thing, too, that was happening in South Dakota is the state certainly had a policy for a while in the 1920s that it didn't want any more of these people born. And so there was involuntary sterilization happening so that... They thought that will end people with intellectual disabilities. Not the case at all, of course.
Lori Walsh: I want to talk more about just what daily life was like. When does it start to become something that people are paying attention to and thinking we can do better? So I want to hear a little clip from former governor Harvey Wollman, and he's talking about the first time that he visited Redfield.
Harvey Wollman: There was a big buildings on the edge of town. And we went in there, and there were kids of all ages from babies in the cribs to people who were older. We got to visit several wards. The conditions were appalling to me because there was no semblance of dignity about it. It was just a... I hate to use the word warehouse, but that's the way it struck me.
Lori Walsh: Paul, why do people not like to use that? You mentioned it, and governor Wallman mentioned it. It does seem, when you look at the history, that that's... Even some of the intent was warehousing.
Paul Higbee: People don't like to to use that term because it is a state institution, and it's like if you warehouse somebody, they're an object. They're not a human anymore, and that's what I think is so offensive about that term.
Lori Walsh: They have no privacy, no private property, no freedom to... Talk a little bit about some of the dairy farm, the work that's being done. And at some point, the way the cows are even taken care of becomes into question because the cows are taken care of maybe a little bit better than the people.
Paul Higbee: There was a farm that raised food for use at the institution. Also, some of it was sold out in the community. It was a good farm, and especially the dairy herd had a great reputation. They always took these cows to the state fair, and they won a lot of blue ribbons. But it's a big job to run a farm. And at some points people said, "Well maybe all the work we're putting into the farm would be better suited going to the care of people, and we can buy the food from someplace else." But I don't know. I go up to that part of the state, and people still remember that dairy herd up there. It might have been some of the best public relations that Redfield ever had was, "Wow, these people can... They can run a farm." But of course, that never should have been the priority, and there are people who say at times it was.
Lori Walsh: Tell me what it was like for parents who sent their children to Redfield. What did you learn from parents?
Paul Higbee: We interviewed parents, and they said, time and time again, doctors almost always were the first people to say, "You ought to put your child into Redfield." They said, "For one thing, having a child with a sort of disability at home is going to disrupt your family life to such a degree that your other kids won't have a normal life." We heard that so many times, people saying, "Doctors told us it was the best thing." Now, this would've been in the 1940s and '50s. Prior to that, there was actually... If you had an intellectual disability, you had to register, and the state could decide that you were going to go to Redfield. That slackened a little bit as we got into the middle part of the 20th century. But still, a lot of kids were going to Redfield because doctors and other trusted people in the community advised it.
Also in those days there were no special education programs in schools across the state. So if your child was going to learn, going to become social, just have a life, there were not very many other options. We did talk to parents who told us, "We couldn't even find babysitters for our children, let alone talk about a special services at a school."
Lori Walsh: Paul, let's talk about some of the people, and some of those people are the ones who are institutionalized, some are parents, some are administrators, who started seeing a better way of doing business for people with intellectual disabilities then sending them to an institution. Where do you want to begin with that conversation?
Paul Higbee: Well, in the 1950s at the University of South Dakota, there was a man named Dr. Henry Cobb who was really a visionary, not only in South Dakota but nationally about how places like Redfield could send their people out into the community and help them build lives like the rest of us have, jobs, housing, recreation in the community. He really was a pioneer, and I'm glad we could recover his memory in this documentary. At the same time, there were active parent groups who said, "We want to help find services in our communities, be it a small community, a larger community like Rapid City or Sioux Falls. We'll start our own schools if we have to," all the time working and being advocates for public schools accepting people with severe disabilities.
Between Dr. Cobb and these parents who just all of a sudden in the 1950s got inspired to make things better for their children and other children who were going to Redfield, that's where it all began. And really then you came into the 1960s and the civil rights movement, and this was very definitely a part of the civil rights movement. There were people saying, "What are the rights of these people? Why are they behind walls? They didn't commit a crime. They're people just like the rest of us."
Lori Walsh: That transition has several different facets to it, and one as simple as being in the school itself and trying to figure out what are the ways to prepare people to go into a community simply by labeling a bathroom, let's say, in a way so that if you're at a restaurant in a community, you can find, "Oh, bathrooms have signs." How complicated is it, then, once somebody has spent so much time institutionalized to transition to the place of their choice in the community?
Paul Higbee: Yeah, it was complicated. For one thing, they were just people who had never been anywhere by themselves, and they were adults. I think some of these people might have been in a restaurant, and it was like, "Who do I ask permission to go to the restroom? I can see it. I know where it is, but I've got this a behavior I've lived with my whole life. I've never done anything by myself." And some people had it figured out really easily, and they felt liberated. Others, of course, it was scary.
Lori Walsh: Talk about some of the challenges from a neighborhood perspective, people not wanting group homes. How challenging were some of those community conversations to have?
Paul Higbee: I think you would look at some of those communities now and believe there never could have been a controversy here because the people who have these disabilities are active beloved members of the communities. They're members of churches. They have jobs. They live in the neighborhoods with everybody else. But you go back to the 1970s, and the first thing some people said was, "We feel like if a group home is built in our neighborhood, property values are going to go down." We looked into this really hard. Property values didn't go down anywhere because a group home was built. In fact, it enhanced neighborhoods in some ways because it was always a home that was well cared for. You often had 24-hour-awake staff there, which made the neighborhood safer. So that was something that that had to be worked through, and some South Dakotans remember angry meetings at city hall saying, "How can you move this home in here, and what's the safety factor, and what's going to happen to our property values?" But South Dakota worked through that, and as I said, in those towns now you just would never guess that was ever a conversation.
Lori Walsh: I want to play another clip from the documentary and this one is Carey Grim, and he's talking a little bit about transitioning into the community and how some people are going to try to take advantage of the newcomers.
Carey Grim: He tried convincing me, Carey Lee, and telling me exactly in these exact words of, "There is no sin in for you, Carey Lee, or anyone and everyone to go to attend the strip club dances, ladies strip club dances, if it's for the right reasons in God's eyes." But in God's eyes, I say, there is no right reasons.
Lori Walsh: The reason I picked that little clip from Carey, Paul Higbee, is two things. One, it gets at this idea of some people probably thought sending someone to an institution would protect them from predatory behavior, and there is some truth to the fact that people would want to take advantage. And also I picked this one because I just love how the clarity of what Carey has decided is right for him as an individual really gets to this point of you can't group all people in one category. Each person that you asked that question of would have had a different answer, just like a everyone that was already living in that neighborhood. Say more about that please.
Paul Higbee: Yeah. Carey is a person who has a remarkably strong set of personal values. Indeed, nobody was going to convince him to go to a strip club. But other people it was like, "Well, if this is what people do out the community, maybe I should do that too." Most of the interactions that people who came out of Redfield had in the community were very positive, and that included people in their neighborhoods, people they met at jobs, people they met at churches. But, yeah, they were certainly not people of one mind, and the community really made them think, "What are my values? I'm in a place where my values matter now and how I live my life."
Lori Walsh: And that gets to something that the documentary does a really nice job of diving into, which is what is individual rights, these civil rights to decide for yourself what you want your relationship to be, what you want your job to be, how do you want to decorate your own space. Talk a little bit, if you would, about that, the people with intellectual disabilities who have gone on to really advocate and push the conversation forward bit by bit.
Paul Higbee: Yeah. There are a number of South Dakotans who have intellectual disabilities who have served on national advisory boards. In fact, Mark Samis, who you played at the top of the interview, is very well known across the country. He's made a sort of a second career to go out and fight for civil rights. That's why he's interested in people like Martin Luther King because he feels that he, and he is, he's doing the same thing in South Dakota and other parts of the country. Two men out in Hot Springs, Steve [Dolman 00:19:36] and Art Butcher, have been on the road for years driving around, going to centers, so community support centers for people with disabilities, telling people what their rights are. You know, "You have a right to have a job of your choice," or, "If work isn't where it is for you, you have a right to retire and do something else." And really these people, the message that they're delivering out there is, it's almost revolutionary. They've attracted a lot of attention.
Lori Walsh: I want to play a little more from Mark Samis with some specifics on what his message is about what's next.
Mark Samis: A job, a place to live, and where they can get the services they need to make it in the community. That's what we want. We aren't going to throw them out, put them out, and you go, "Sorry, you're on your own." No, we want to make sure they have everything they need to make it into the... to be a productive member of the community.
Lori Walsh: Paul, tell me a little bit about, having worked in this field and then doing this documentary work, what did you learn that you didn't know before?
Paul Higbee: I think one of the interviews that really surprised me... I had never thought about this before, but we interviewed Barbara Avery of Sioux Falls who said later on the siblings in that family when her sister was sent away, "We started thinking where we the reason that she was sent away and didn't live with us? Were our parents saying we've got to do this so we have a better life for our children who remain at home?" And I heard that from some other people, too. I think in working in the field, what I didn't always think about enough was what about the home, the parents, the siblings. What does this whole experience of having somebody with an intellectual disability, how is it impacting everybody else in the family? There's that movie Rain Man with Dustin Hoffman where a person is institutionalized, and then later he found out that his siblings didn't even know he existed. And we found a couple of cases like that in South Dakota, too. And boy, you talk about trauma for a family, that's it.
Lori Walsh: It seems to me like it tied into a little bit of the women's movement too, along with civil rights. So many of these mothers were told by pastors, by doctors, "This is what you need to do. This is what's best. We'll make this decision for you." And then many of these mothers are the ones who come together and say, "There has to be a better way to do this." But that's a delicate thing because then it was also this sort of, "Did we make a mistake? Did we make a decision that was wrong?" There's a lot going on there for women and for families.
Paul Higbee: Yeah, there sure is. I mean, we talked to mothers who said there was never a time, while they had a child with an intellectual disability, where they could even leave the house. They couldn't find babysitters, get a job. That was totally out of the question. So yeah, that was for... Well, and there were cases, too, where just the trauma of having a child with a disability, and that's not quite the right word, but that's how people felt, it caused divorces, too. So there were a lot of young mothers who were really, really on their own and maybe couldn't even find a group of friends because nobody could understand their child.
Lori Walsh: The work on this continues. SDPB will bring you more content regarding this documentary, Leaving Redfield. Paul, on a final note, one of the things I also found interesting in our remaining 30 seconds is this notion of brain injuries, what we know now versus what we knew then, and how that fed into the fear of people who are isolated at Redfield because we were all just one car accident or farming accident away from being sent away and the implications of that for people, as well.
Paul Higbee: That's a scary thing for people to think about. I might mention also Bob Bosse from Public TVs who stepped in and made it a real production. We owe him a lot.
Lori Walsh: All right. Thank you so much, Paul, for being here with us today. We appreciate your time.
Paul Higbee: Thank you.
Lori Walsh: Paul Higbee joined us from the Sue W. White Studio on the campus of Black Hills State University. The documentary is called Leaving Redfield, and it premiers for the first time Monday, June 10th at 9:00 PM Central, 8:00 Mountain on SDPB1.
