Us and Them
Michael T. Bailey
Don was a friend of mine. He died needlessly because of poor medical care. He was 45 years old. He had been a wheelchair user all of his life.
Ten years ago he gave me my first real lesson in self determination. He lived in a group home on the southern Oregon coast and I was asked to visit him with a "quality assurance" check list to see if he was happy with his "placement'.
I ran through the list of questions with him ("food good?" "yes"; "roommates nice?" "yes"; "enough room?" "yes"; "ever tortured with cattle prods?" "no", etc.)
When we finished we went into his bedroom and closed the door. "How do you really like it here", I asked.
"I hate it", he replied. "I never want to see the Pacific Ocean again as long as I live!"
As a young man Don lived in a nursing home. He hated that too. The only good thing about it was that it was in eastern Oregon near his family. When a "bed" opened up in a group home he was moved in to it. It was as far away from his family as it could be and still be in Oregon. No one asked him he wanted that location. He lived there for five years.
He wanted to live in Portland and with help from his friends he moved here seven years ago. He lived in his own apartment, went to classes, was a wonderful speaker on disability issues, worked on institution closure, loved music and travel, had lots of friends and never spoke a harsh word about another human being. He loved his lite.
I talked to him on the phone before I went on vacation. He told me he was sick. We agreed to have lunch when I got back. Last night I went to his funeral.
In the front of the chapel were more than a dozen of his friends in wheelchairs. In addition to the minister only two others were allowed to speak. What they said chilled me to the bone. I don't know who they were talking about. It wasn't Don.
His "assistant" tearfully related how she had gone to his apartment after his death and seen his empty wheelchair and how happy it make her to think that he no longer needed it. His suffering was over. Finally the release of death had sent him to a better place. Now he is "happy and dancing".
A former neighbor spoke of his childhood. She too concluded by telling us how joyul it must be for him to be "finally free. No longer did he "suffer from his disability, the unfairness of it all was finished. His struggle is over."
The message to his friends in chaits was clear: "you are better off dead!"
My friend Dan Wilkins, purveyor of fine gear at the Nth Degree, has said it best; "If there is such a thing as 'us and them,' it is not between disabled and non. It is between those who get it and those who don't."
Don 'got it.' A lot of people in his life did not.