Introduction

Excerpt from Introduction, by Julie Pratt

I’ve watched dozens of people with disabilities leave institutions for homes in the community. Each time, I’m struck by the power of their stories -- how they came to the institution, why they left, and what their lives are like on the outside. They help us understand what it means to be labeled and treated as "different." They advise us about what citizens and programs can do to make people with disabilities feel welcome.

In 1994, with support from the West Virginia Developmental Disabilities Planning Council, I formed a team of writers to interview people who had lived in our state institutions. All of the people we met had developmental disabilities. Some had Master’s degrees, while others had never attended school. Some spoke eloquently about their lives, and some could not speak at all. Some used wheelchairs or communication devices.

We recorded 24 stories between 1994 and 1997. Twelve of the people agreed to let us share their names and stories in this book. We have used people’s own words whenever possible. When necessary, we relied on relatives and staff to fill in the details. The stories as they appear in this book are condensed from lengthier transcripts and have been approved by the people we interviewed.

In all cases, we tried to write about people’s lives as they experienced them. We did not second-guess what they told us. We simply respected their memories and feelings about what happened to them.

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People with developmental disabilities are as diverse as any cross-section of American society. Each person’s life has been shaped by his or her unique circumstances. Each has distinct likes and dislikes, talents and idiosyncrasies. Each has a very personal response to his or her life situation.

What the people have in common is the label of disability and its consequences. People with disabilities are often segregated from the rest of our society and deprived of ordinary experiences and opportunities. Howard Cobb said "my choices were taken away from me because of the label that was given to me. Some people treated me as if I was not worth their time."

We saw how our attitudes about disability put a heavy lid on people’s lives. Ken Ervin, who later went on to get his Master’s Degree, described his high school experience in an institution: "I’m sitting there reading Dick and Jane and learning how to count by putting beads on a string... At one time they tested me for seizures because I would drift off. But what I was really doing was getting sleepy, because I was bored."

We also saw what happens when we raise our expectations for people. Tim Urbanic found Echo McCallister sitting alone in his room at Spencer State Hospital, drawing an elaborate picture on a small index card. Tim and his wife, Melody, encouraged Echo’s art and treated him as an artist. Seven years after they met, Tim accompanied Echo to an exhibit opening of his drawings in Washington, D.C.

We found evidence of people’s ability to work and the satisfaction derived from it. Teresa Pritchard, for example, recently celebrated her third anniversary at Taco Bell restaurant and has been named "employee of the month." Ken Ervin has put his Master’s Degree to work in jobs with disability organizations.

Still, most of the people we met have little, if any, meaningful work. Some people spend their days the same way they did in the institution. We observed people in day programs watching TV or doing nothing at all. Some of the programs bring in contract work, but it pays little and rarely leads to outside employment.

People’s progress seemed to depend on two important factors. The first was having people who believed in them. Mickey Finn, for instance, credits a physical therapist for recognizing his potential when he was a young child, in spite of his poor scores on psychological tests.

Second, the people who believed in them had the willingness and resources to help. One-to-one help was most effective. Terry Williams, the mayor of Spencer, took a personal interest in Ronnie Moore, and hires him each year to work at the town’s the Black Walnut Festival.

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Despite the ups and downs of life in the community, not one person we met wanted to return to an institution. They gave a variety of reasons, but one of the most common was freedom -- freedom to decide not just the big things, but also the small, everyday things. Ilene Messick told about moving out on her own, after living in institutions for 30 years: "They got me my own apartment, and I wasn’t scared or nothing. It’s nice to have your own place instead of being in a state hospital, ‘cause the way I think, when you’re on the outside, you got more better freedom. You go to bed when you want to and get up when you want to, and there’s no troubles."

Freedom for Ronnie Moore is living in an apartment in Spencer, riding his bike around town, and chatting with his neighbors and his friend, the mayor. "I’m free right now," he told us. "I’m free, I love it, and I get to meet a lot of people."

For Maria Higgs, freedom means living with her parents and sister, and attending her neighborhood school. Even though Maria needs around-the-clock care and supervision, Linda Higgs believes her daughter has far greater opportunities than even the best institution could have provided.

She has a lot more friends, for one thing. Linda described Maria’s first year in the public schools: "The kids all took rides in her wheelchair. They all took turns pushing her in it... The kids really like Maria. When she was sick and out of school for weeks, I took her back toward the end of the year. It was amazing to me all the kids in that school that know Maria."

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In the early days of deinstitutionalization, there weren’t many programs to support people in the community. Some people became homeless. Howard Cobb told us how he fared: "I would be given $100 or so from my trust account and go to the Greyhound station and catch a bus somewhere. I had no experience with money... Eventually, things would end up falling apart, and I would go back to the hospital."

West Virginia’s Medley and Hartley court orders in the early 1980s dramatically changed this situation. They spurred the development of community services for people with disabilities. The people we interviewed had housing that was at least adequate and, more often than not, was personalized and homey. Nearly all were receiving some type of support from a community program.

But despite caring families and concerned professionals, we saw that bad things can still happen to people. One man we originally interviewed chose not included in this book because his life was in turmoil. He needs extensive support on a daily basis. He moved to good living situation when he left the institution. But changes in staff, funding and other circumstances caused his living arrangement to fall apart. He and his family were struggling to come up with a new plan.

Life feels like a house of cards to some of the people we met. While Jenny Hancock’s services are O.K. at the moment, her mother said that "the risk of her being committed to Weston Hospital is still as great as it was 15 years ago. For when the appropriate supports are removed, she will fall. And it will be costly to her, to me and to the agencies."

We learned a great deal about people’s vulnerability. We heard horrific tales about abuse behind the closed doors of institutions. People described physical abuse by staff and medications that "were passed out like candy."

Abusive situations weren’t limited to institutions. Some people were placed in institutions after they were removed from abusive families. Some described mistreatment at the hands of staff, relatives and acquaintances in the community.

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We concluded that, no matter where you live, the more people who know and care about you, the safer you are. We found that caring relationships are central to safety and to people’s satisfaction with their lives. Mickey Finn talked about being on the verge of suicide when "I met this girl who turned my life inside out. Two weeks later, I worked up enough nerve to introduce myself to her, and we became friends. She paid attention to me as a friend and that was enough to give me something to live for. Just that little taste of affection was the sweetest thing I’d ever had."

Intimacy has been elusive to many people. Ken Ervin talked about his early adult life: "Dating was kind of a tricky thing... The people I did go out with wound up being put in a bad situation. Their friends would go, ‘Ken’s funny and he’s great. But dating him, wel-l-l-l...’ It wasn’t out of malice because everyone loved me. It was just that there was this unspoken line."

Yet several people we met have been in long-term relationships. Howard Cobb was married for three years. Teresa Pritchard has lived with her boyfriend for several years. Ken married a woman he met at West Virginia University just as we were finishing this book.

Many people we met still grieve the loss of family. Some people ended up in the institution because one or both of their parents died. Junior Rogers lost both parents by the time he was ten years old, then lived with an aunt until she became ill. Because the state didn’t have foster homes at that time for children with disabilities, Junior was sent to an institution.

We saw institutionalization sever family ties. Ilene Messick gave birth to her third child after her husband admitted her to Weston State Hospital. All three of her children were taken from her and raised in separate homes. She did not see them again until they were adults.

Some people have maintained or revived relationships with relatives. Others have found new families. Junior, for instance, proudly showed us the home he shares with Kelly and Sharon Staten and their two daughters. Sharon told us, "I wondered when he came here how long Junior would live with us. But now I think he’ll be here forever. Now he’s just like family."

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As more and more people move to the community, we’re learning about what helps them find a good life. It’s about having high expectations for people, about treating them respectfully and individually, about keeping people safe and expanding their relationships.

West Virginia closed its last institution for people with developmental disabilities in 1998. But institutions are more than just buildings. They are reflected in attitudes and practices that can live on long after the last building is torn down. They surface every time we make assumptions about what people can’t do, every time we segregate people who are different, every time we deprive people of the relationships that give life meaning. These actions can be as cruel and as limiting as any bricks and mortar ever were.

What happens to the people in this book depends in large part on our attitudes and practices, whether we support strong community programs, whether employers are willing to take a chance on someone who’s never had a job before, and whether friends and neighbors are willing to extend themselves to make people feel welcome.

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