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Scott - The Secret Diary of Lignamorren
The Occasional Thoughts of a Lost Ratboy

Sean Willard
Date: 2008-05-01 15:16
Subject: Scott
Security: Public
Mood:sadsad
Blog Against Disablism Day 2008

Like many people I know, I was something of an outcast growing up. Grade school (years 1-8, ages 5-14) was particularly tough. But in some of my darkest years, there was someone who brightened my life in a number of ways; one, I'm ashamed to say, was by having it much worse than me.

Scott Clester.

He had muscular dystrophy. He was wheelchair bound. By the end of our time together, picking up anything heavier than a pencil was a two-handed operation.

I'm not even sure how it happened, but somehow I fell into a position as, during the school day, his wheelchair pusher (and repairman -- more on that in a minute), constant companion, caretaker, and friend. I guess it was just something no one else was willing to do, and I think that being only one rung up on the ruthless grade school social ladder made me the perfect (albeit not entirely willing) candidate.

We were pretty compatible in personality, interests and intelligence. I don't remember a lot of what we talked about, but I distinctly remember a geeky tone to a lot of our conversations. The only time I went to his house was I think around grade 5, and we worked together on a little diorama that I seem to recall had some science fiction theme -- all I remember, really, is using cups cut out from a cardboard egg carton, turned upside down, as little huts. Ooh! I remember now! It was meant to be a scene from Stanley Weinbaum's remarkable "A Martian Odyssey".

I pushed him all over that school. It was pretty fun, actually. For me. Too much fun, I have to admit -- being, after all, a boy, there were times I couldn't resist going too fast for his comfort, cornering sharply enough to knock one of the solid-rubber tires off a wheel (this is where the wheelchair repair came in -- I got pretty good at remounting those tires), and once, to his great dismay, taking him down a pretty steep slope -- the memory of a small boy exaggerates it, but I think it was an honest 4 feet in height, maybe a 15% grade. Oh man was he pissed off; it's a wonder I didn't tip him out of the chair.

It was not so much fun sometimes. I was always painfully aware that we were a little pair of outcasts. Just associating with him put a stigma on me, but paradoxically I think it also kept me out of harm's way; as cruel as young children can be, I think everybody knew that it was flat-out unacceptable to go too far in Scott's case. No one did either of us any physical harm.

One task that at first was horrific but really wasn't that bad was taking him to the bathroom. He had to use the one at the nurse's office; next to the large, disabled-friendly bathroom was a cupboard holding a large plastic ewer. I'd roll him in, fetch the jug and hand it to him, and he'd trundle in, shut the door, and do his business. I was spared further involvement with that process. Nothing at all to complain about, really, but that was an experience a 10-year-old boy does not want to talk about.

As I've intimated, I was far from a perfect caretaker. There were many times when I was quite resentful of the obligation I'd somehow fallen into. And of course as time passed it got worse. Scott got weaker and weaker, and his moods, less and less pleasant. But I knew nothing about his disease, and I certainly had no idea it was, in his case, a death sentence. I don't remember how we parted; I don't recall anyone else taking up the burden, and I think he just quietly left school. A few years later, as a freshman or sophomore in high school, I heard he had died. I didn't know how to feel about that. (Now, of course, I'm bawling my eyes out as I write this.)

I don't know what, if any, lesson to draw from this. It was just an element of my life, a pretty big one in some ways, but something I've really not thought much about over the years. I certainly had no expectation of talking to anyone about Scott, or writing about him. But when I read lauredhel's entry that starts "I used to wait until I was sick enough to go to the doctor. Now I wait till I'm well enough to go to the doctor", it hit me very hard. I think you can now appreciate why. I know that lauredhel's case is quite different from Scott's, but the idea of another good friend possibly someday going through what Scott went through just tears me up inside.

Ever since reading that entry of lauredhel's, I had been thinking about writing about Scott. I took a note or two. Then when this Blog Against Disablism Day 2008 thing started up I knew it was the perfect opportunity. But I waffled. I started writing, but it got too hard. Finally I thought OK, I'll just write up something short before the day is over. I ended up saying most of what I wanted to; but it really isn't enough. It's not enough because I don't even know what I want to say and what I want to conclude with. But here it is, warts and tearstains and all.
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tigtog
User: tigtog
Date: 2008-05-02 00:00 (UTC)
Subject: (no subject)
Thanks for writing this, Sean. I think there are many people who fall into being the carer without ever being actually asked, and who feel much like you did with Scott.

Much of that reaction is due to the reflected stigma of the disability owned by the cared-for, I think. The stigma of disability cast such a huge field that it sucks whole families down into the well around a single disabled family member.

It seems to be part of what Lauredhel wrote about the magical thinking and moralising involved in Healthism, the idea that people with health/mobility problems are somehow complicit in their own conditions by not having been pure enough in some way, and that if carers (other than spouses, who are romanticised as carers) actually had something meaningful to do in life they wouldn't be stuck with accepting the moral taint that comes with care-work.

Meh, not sure where I'm going with that.
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lauredhel
User: lauredhel
Date: 2008-05-02 04:14 (UTC)
Subject: (no subject)
I love this kind of writing, and this post.

Remember back in the Usenet days, when we lamented the predicted Imminent Death of Text, and how pompous curmudgeons have been going on and on about how no one writes any more, and about how electronic communication isn't real communication and online people aren't real people, and blahdiblahgetoffmylawn? One step into the blogworld sweeps all that away in an instant.

This sort of communication might not be as high bandwidth as face-to-face, but it's pretty damn good.

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User: (Anonymous)
Date: 2008-05-02 20:47 (UTC)
Subject: (no subject)
Lovely contribution. Thank you.

-- Sara (http://www.saraarts.com, http://movingrightalong.typepad.com)
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User: thegimpparade
Date: 2008-05-05 05:26 (UTC)
Subject: (no subject)
I certainly had no idea it was a death sentence.

While your friend's life certainly ended too soon, it's important to note that the idea that muscular dystrophy is absolutely a death sentence is a myth perpetuated by Jerry Lewis and his pity-thon. There are many people out there in their 30s and 40s with varieties of MD, even Duchennes.

I don't have Duchennes, but I do have a serious form of MD. I'll be 40 this fall.
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Sean Willard
User: lignamorren
Date: 2008-05-05 06:24 (UTC)
Subject: (no subject)
I am delighted to be corrected. I'll reword accordingly. Thanks very much.
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