Tuesday, June 18, 2013

The People Who Shape Our Lives

This morning I learned that my uncle passed away last night. He lived just past 60, an atypical life span for a man born in the 1950s with Down syndrome (life expectancy is now on the rise for those with Downs). Like many with Downs, he had a genetic heart defect--a hole in his heart. For much of the last two decades he battled dementia, as many with Downs do as they age. Several years ago he had a stroke and has since been a shell of the happy-go-lucky man I remember from my childhood.

The more I thought about my uncle this morning, the more I realized that he shaped my life in ways I had never stopped to appreciate.

I grew up knowing that my uncle was special. When I was young, I knew that he was born without something called a chromosome. I didn't know what that meant when I was a child, but I loved having an uncle who was playful like kids my age. I thought it was cool that he did gymnastics and I was proud of the Special Olympics medals that he displayed in his bedroom. As a kid, I knew that he'd spent part of his childhood at a place that wasn't kind to him. I didn't understand neglect then, but as I got older I understood why he and many in my family spoke of the state psychiatric hospital with disdain. When I was eight and nine years old, I didn't understand why this man I'd always known to be happy and caring could be angry and at times violent. As he aged and I grew up, I started to understand the relationship between Down syndrome and dementia.

My uncle, who was the same age as my mother and her siblings, was actually my great uncle. He was raised with my mother and her siblings by my grandmother, his sister, once he came home from the state hospital. This meant that when I visited my grandparents, I was also visiting my uncle. His bedroom was upstairs and he loved to sit in his recliner, often in his underwear twiddling his socks, watching his favorite television shows like Growing Pains. In his life, he worked a variety of jobs, mostly janitorial-type jobs that allowed him to feel like he was a part of a community (one of the true successes of the policy of deinstitutionalization). I often remember picking him up from work when I was a kid and his work made him so happy.

Eventually my uncle was unable to stay at home with my grandparents because of the progressing dementia. By the time I moved in with my grandparents at the age of ten, my uncle was living in an assisted living facility in Pocatello. Those were trying years for my grandparents as they faced the reality that they could no longer care for him on their own. The facility where he lived was finding it more and more difficult to deal with his behavioral problems and my family jointly decided that the best option for him was to build a group home (assisted living facility) where he could live. When I was eleven, we opened that group home and my uncle was one of the first residents to move in. For a time it was the perfect arrangement. However, the dementia was becoming more and more apparent. He went from doing anything for his dear friend and roommate with whom he shared an incredible bond, perhaps because they had Down syndrome in common, to being violent toward that roommate. He once gave me his Sesame Street blanket that had Big Bird on it so his roommate who was afraid of birds would not be afraid. I still have that blanket. It was very hard to watch his spiral downward. Eventually the group home we built for him could not give him the care he needed and he was moved into an ICF/MR (intermediate care facility for those with mental retardation). He spent the rest of his life in various facilities equipped to deal with his many needs.

My uncle's time in the group home my family built for him is just a small part of how his presence in my young life actually shaped it. When we opened the group home, my mother, brother and I lived in the facility. Unlike any of my peers, I grew up in a group home. For much of my adolescence, I had what amounted to an extended family of developmentally disabled strangers who I grew up living with.  That roommate of my uncle's that I mentioned actually took me on my first date when I was sixteen. There was nothing unusual about this to me. However, none of this would have happened had it not been for my uncle. When I was thirteen, my mother married a man with two developmentally disabled children. Acquiring two new siblings with disabilities wasn't unusual to me because I'd grown up around my uncle.

At the age of twelve, I volunteered for Special Olympics for the first time. This is something that would become a regular part of my life. Without my uncle and his long and storied (according to him, of course) Special Olympics career, I likely never would have become involved with Special Olympics.

When I began college at Idaho State, I went to work for a developmental therapy company that had once sent developmental therapy aides out to our group home to work with our residents. One of the first places I was assigned was the very facility in Pocatello where my uncle had once lived before we built our group home. I became the house parent there and was surrounded by unconditional love, a new bundle of sibling-like friends and an experience that I would never forget. I spent five years there as the house parent and there was hardly a day that I wasn't reminded that both my uncle and my sister were once residents there. Nearly every day that I went to ISU I passed the very building where I have many memories of picking my uncle up from his job when I was a kid. I often felt like he was still a part of my life, though I didn't see him much as he was by then living in a facility in Idaho Falls.

Where I find my uncle's influence in my life almost daily now is in a research project I began in 2005 about the state psychiatric hospitals in Idaho. Their history, riddled with dark periods when patients of those hospitals were considered inmates and treated as such, drove my research and that research now exists in the form of a book I am writing on the topic. Though I first became aware of a scandal at the state hospital in Blackfoot in the 1940s because I was researching Governor Charles C. Gossett, my interest in the history of psychiatric hospitals in this country and the horrific history of neglect and maltreatment that they share is driven by my knowledge of how my uncle was treated in the 1960s in those very hospitals. With every appalling account I read of how the developmentally disabled and mentally ill were treated in these facilities, I am reminded of my uncle and the terrible conditions he endured while residing in one such facility. What I read makes me angry on his behalf and makes me question how so many could have seen nothing wrong with the atrocities that took place in these facilities for so many decades.

My uncle's presence in my life while I was a child certainly made me blind to the differences between human beings. Like me, my younger brother was blind to how different the people we were surrounded by as children actually were. He had no idea that not everyone had developmentally disabled siblings in their homes. He had no idea that it was unusual for him to grow up in a group home. The term color blind is often used to describe people who take no notice of race. For my brother and I, we grew up completely oblivious to disabilities. They gave a person character, but they didn't make them any different than us. My uncle taught us that it didn't matter and we carried that with us into adulthood.

Beyond the heavy, important things having my uncle in my life taught me, there were the lighter things, too. My uncle had a bit of speech impediment, as many with Downs do, and he often repeated sayings in his own speech-impeded fashion. For instance, instead of the saying "life is hard,"it became "slice a lard" and "C'est la vie" became "shoot a bee." These little sayings pop into my head from time to time and it doesn't bother me a bit when I say them and nobody has a clue what I am talking about. Because when I say them, I am reminded of a man who changed my life forever.

When I visited my grandparents as a kid, I would sit down with my uncle, he'd get out a red plastic cup and he'd pour me half of his Diet Coke and we'd sit there, drinking our soda and teasing my grandpa. Teasing my grandpa was a favorite pastime of my uncle's. I wouldn't mind sitting down with my uncle today, splitting that Diet Coke, and stealing my grandpa's hat just to hear my uncle giggle at my grandpa's protest and say, "slice a lard." Slice a lard, indeed.

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