Most people know him as Jimmy or James. In lighter moments I know him as Beanblossom the Great. It’s a moniker I gave him when we first met twenty-five years ago. He liked it and it’s stuck like glue ever since.
James is my wife’s developmentally disabled brother.
James wasn’t born with a disability. He was quite normal at birth. He was the older of a set of twins. But, sometime in the fall of 1946 he got very sick. The doctors later told the family he’d developed spinal meningitis and double pneumonia simultaneously. By the time his parents got him to a hospital his fever had reached 109. He survived the ordeal, but his brain was all but fried. He’s been developmentally disabled ever since.
I don’t know much about the time between his early life and when I met him. I do know that he spent some of that time in institutional settings at Parsons and somewhere in western Kansas. By the time I met him he was living at home, spending his time listening to gospel music or working in a sheltered workshop in Johnson County.
We hit it off right away. Like Forrest and Jenny we were two peas in a pod. That has never changed over the years. I’ve done my best to be a constant friend to him and on occasion I’ve stepped in to be a fierce defender. One of the enduring lessons I’ve taken to heart from James over the years is that there is often much more to folks with developmental disabilities than meets the eye.
Some years ago, when he was living in Shawnee with his mother, the workshop started sending a series of notes home with him. If I recall correctly they were called incident reports. They were a curious mix of police report and institutionally based language. “Consumer refused to do assigned work.” “Consumer screamed.” “Consumer got into an argument with Charles.” A meeting was scheduled and his mother asked me if I would attend. When the meeting began I could see that James was quite worried. The supervisor began by reading back the litany. “Consumer did this.” “Consumer did that.” I Interrupted and asked, “Why do you keep calling James “consumer?” “What’s he consuming anyway?” “Too much oxygen?” “Too much of your precious time?” The supervisor explained and his explanation went right over my head. Institutional language has that effect on me. We then proceeded to the primary cause of the meeting. James had been told to assemble some notebooks. When the work was brought to him he saw that the notebook covers had pictures of scantily clad women. He told the supervisor he couldn’t do what he’d been told to do. The supervisor insisted. James said he wouldn’t. The supervisor said he had to. James ended the standoff by saying, “You can’t make me do this crap.” The result of the dustup was the incident report that had precipitated the meeting. I asked the supervisor if he had any understanding of James’s moral compass. He looked at me quizzically, which told me that he probably didn’t believe a developmentally disabled person could think moral thoughts. I assured him that James did indeed have a moral code that he would not violate under any circumstances and that a good supervisor would have found something else for James to do instead of setting up a battle of wills he would never win.
The meeting ended with not much resolved. James wasn’t going to shift his moral compass and the supervisor was going to continue to flex his administrative muscle.
James is, of course, developmentally disabled. It would be easy to think the best way out of the dilemma would have been to give in. I disagree. I think his response was quite normal. Isn’t it normal for us to draw lines we won’t cross? Didn’t Johnny Paycheck strike a chord with the public when he crooned, “Take this job and shove it?”
Thankfully, things have improved immeasurably since that meeting. James now lives here in Emporia. He lives independently, with the help of the wonderful staff at Auspicion. He spends his days working for Hetlinger. He loves his work and his supervisors, especially Vivian. Every time we get together he has me transcribe his daily production numbers on to small slips of paper which he files meticulously.
There’s a lot more I could say, but I’m running out of space. The bottom line is that James wants the things in life we all want – to be happy, to live independently, to be productive. All in all, I’d say that’s quite good, and quite normal.
Maybe you’ll have the pleasure of meeting him some day. If you do you may get to know him well enough to call him Beanblossom the Great.