Friday, July 25, 2008

My uncle

My great uncle Ben passed away yesterday. Ben was 90 years old.

Ben had an unspecified developmental disability and / or a severe articulation disorder. He was born 90 years ago where disability wasn’t something talked about. I’m sure there were institutions ready and willing to take him, but instead he was cared for all of his life by his parents, brothers and sisters, and later on, his many nieces and nephews. Most importantly, I think, during the last 20 years of his life, he cared for himself, in his own apartment, until he was no longer able.

I spent today in a Kathie Snow presentation where she talked about building natural supports for people with disabilities. Ben lived most of his life with natural and generic supports, using services only as he got older. Ben had Meals on Wheels and the community’s subsidized housing. He later had a private duty nurse come check on him and his living was always earned through his social security checks, especially as he got older and could no longer make money mowing the lawn and doing odd jobs for people. Ben supposedly lived in the “dark ages” for people with disabilities, but he got along fine, even better, I think, than some of the people I care about who are completely entangled in the disability service delivery model.

Ben had several advantages that most people with disabilities don’t have. First of all, he was one of 11 children. That sort of large farm family practically guaranteed an abundant supply of housing and care options as his parents got older and passed away. By the time I was born, in the mid 70s, a few of his sisters and brothers and their spouses had passed away, but most were still in the small town, or had come back to the town.

That didn’t mean that the abundance of nieces and nephews were there, however. Most had left the town for good by the time I came around. As Ben’s siblings and their spouses got older, the care fell to the remaining nieces and nephews, with more and more reliance on supports.

“Community” is such a buzzword in the field of disability professionals. I can’t count how many times I’ve heard that word in reference to a child or adult who is, for all intents and purposes, institutionalized in the community. A bowling program and weekly trips out with other disabled adults isn’t living in the community. That community, however, is disappearing quickly for all of us, disabled or not.

Ben, however, lived in the community. He lived on the family farm most of his life, first with his parents, then with his sister, and then with my grandparents. When my grandparents moved away, he lived with us for a year. Then in his 60s, he wasn’t really happy in a home with three young loud children, so my mother found him an apartment in town.

He knew how to make himself a simple breakfast and supper and he had his meals delivered for lunch. My mom would pick up his laundry once a week and she or a cousin would clean his house. He learned how to work a VCR and eventually, cable and satellite TV with a special remote. He loved his tape player and his John Wayne movies. He learned to use a telephone with pictures of people on the speed dial buttons. He walked down to the post office every day for his mail, and more often than not, to the town’s restaurant for his supper. He could walk to visit many of his sisters and brothers who lived in town and most of the older people in town knew him. “How’s Benny?” they would ask. It seemed strange to me that to them, he was “Benny” – like a child, when he had always been an adult in my life.

When I got my first job in this field, working with a child with Angelman Syndrome who used gestures and vocalizations to communicate, they asked if I’d had any experience with disability. I said no. It wasn’t until years later that I thought of Ben. He wasn’t “experience” though. He was my uncle.

My grandparents and Uncle Ben lived next door to me until I was 8. Ben was a constant presence in my childhood, always quietly in the background of a family event. It seems to me that he came and went when he wanted to, preferring long walks on the farm, mowing the lawn or tinkering with the lawn mower, or being with his horse, Trigger, to the aftermath of a Sunday dinner, which inevitably meant some sort of loud squabble between my sisters and me.

Upstairs in the farmhouse was our own playhouse, except for Ben’s room. We were to respect Ben’s room and not run in and out of it. He had a T.V. in his room, which was something amazing in the 70s when T.V.s were mostly in large wooden consoles. On the shelves of his room sat his collectables – horses, mostly, ceramic and metal and plastic. There were also birdhouses made from craft sticks that my cousins, sisters, and I would make. On the walls were long paper scenes from colorforms – a toy where children would rub a print of a cartoon cartoon character onto a piece of a paper. I remember making a Scooby-Doo colorform for him and a pink-sunseted Bugs Bunny space scene. I don’t know if he did the remaining scenes or if they too were gifts from his great nieces and nephews.

What I loved most about visiting Ben’s room was his keychain collection – truly a wonder to behold. Ben had keychains from all over the U.S. He had cheap bank and Missouri Farmer’s Association keychains. He had fancy puzzle ones, like the little plastic ships in primary colors that would come apart. He had a few in the shape of tires and of bottle caps. He had large gaudy inspirational keychains. As an adult, I would gather keychains for Ben at every place I traveled to, becoming sad in later years when I knew that there was no place for this collection in his nursing home.

What do you do with all these keychains now? Individually, they have no value. There’s not a hidden gem in there that Antiques Roadshow will surprise us with. Much like his horses, or my aunt’s dolls, or any collectable, their value was that they were his, that they represented small acts of kindness made on his behalf by great nieces and nephews all over the country. And yes, they represent guilt. I know that more than once, in some airport, I would pass a keychain rack and feel a stab of regret for not visiting my uncle more. How was Ben? How long had it been? My last time in town I wanted to go see him, but, well, it can be awkward just stopping by like that. I didn’t have the time. The least I could do was pick up a keychain to let him know I hadn’t forgotten.

That happened too often. Ben loved babies and he was especially proud of his great-great nephew Benjamin. As I said before, we grew up with Ben in the background and thought nothing of it. But at a certain age, the awkwardness sets in. I began to worry about what would happen if Ben was talking to me and I couldn’t understand him. How would I know what to do? I wanted to clean his house only when my little sister was with me so that she could take him to the grocery store at the same time. (To be fair, though, that had less to do with awkwardness and more to do with trying to keep him off the wet kitchen floor in his slick cowboy boots). I wanted to see Ben, but only if someone was with me to help.

I try not to be hard on myself for that, remembering the tons of nieces and nephews who never stopped by at all. Still, I hope he forgives me for that.

Thankfully, I got over that phase and I think it was because of the work I did. I’d had experience with all sorts of people who communicated in all sorts of ways and it helped me stop feeling like Ben was an uncomfortable obligation and instead helped me sit back and enjoy Ben again. I loved it when I was mopping his floor and he sat in his favorite leather chair and sang “Home on the Range” to himself, rocking and thumping the leather with his fingers. That was his happy song.

In the last few years, Ben didn’t sing many happy songs. It started with falls, a few here, a few there. Mom had to take away his beloved cowboy boots and give him tennis shoes. We tried a life alert system. He had over 100 calls one month. By this time, the brothers and sisters were almost all gone and the nieces and nephews were spread even more thin – most the younger ones having flown and my mom’s generation caring for them as well as their own parents.

He began to have complications from his diabetes. My little sister would take him shopping and have to haggle him into diet coke and sugar-free ice cream when what he wanted was a real Coke and a Klondike Bar. We replaced most of the meals he made himself with meals from the restaurant in town. That worked for a while, but the headaches and dizziness began to plague him. I don’t think his headaches ever went away.

After the last, bad fall a few years ago, Ben went to a nursing home. We knew, as he did, that it was the beginning of the end. There he became “a behavior problem” in a way he’d never allowed himself to be, getting upset and agitated, not keeping his clothes on, yelling “hey” and clapping his hands together in frustration.

Worse, though, was when he was calm, sitting with his head on the table and not moving.

We brought his beloved John Wayne tapes and he stubbornly turned away from the TV. We brought his stereo; he turned it off. I decorated his window with Christmas lights, remembering all the times I decorated his apartment for Christmas as a child, but he wouldn’t appear to know the difference. Even his dancing Rudolph the Reindeer didn’t cause a stir.

Ben, at his late 80s, mourned the loss of his independence so fiercely that it was hard to bring him out of it. Still, there were a few moments where I could see the old Ben, especially when my grandmother and aunt were also at the same nursing home and teased him.

This isn’t all of Ben’s story – there are pages and pages to tell. But there aren’t very many left to tell it. I think of his last few years and how he was a shadow of himself there. But his life is not a sad story. Everyone of those 90 years could have very easily been spent in a place very much like the nursing home, a place he hated with all his heart. In 1928, I’m sure that was an option to his parents, perhaps the only option anyone thought they had.

Before the age of supports or inclusion, Ben had all of that. Before the IDEA, he went to the 1-room school house with his brothers and sisters. He had a long, happy life surrounded by friends and family. He leaves behind acres and acres of lawns mowed and hay rakes and baled, miles paced all over the farm on foot and by horse, and later in a worn path across his apartment carpet. He’s saved barn kittens from Tom cats and retrieved lost toys tossed over the side of the bridge into the creek. He was the recipient of thousands of coloring book, craft sticks, color-form and misc craft projects, which he always displayed with pride. He herded cows and preschoolers out of trouble.

In short, he was a valued and loved member of the family and the community. He will be missed.

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