27 October 2009

A Chat With The Red Queen

"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing."

"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place."
Lewis Carroll
Through the Looking-Glass

I love adaptive technology. I really do. I love all the gadgets and machines and doodads and software. I don't like needing them, understand, but I love messing with them. And when I do need them, I'm lucky they exist and that I have access to them. I know that. But I still feel a lot like the Red Queen. In using adaptive technology to try to keep up with a progressive disability, I'm running as fast as I can just to stay in the same place.

As I found it harder and harder to haul my sorry butt from one place to another, I went from using a hiking stick as a hiking stick, to using a hiking stick as a cane, to using forearm crutches, to a manual wheelchair, to a power scooter, to a massive shiny black power wheelchair the size of a small subdivision that can, if required, drive up a tree. Not that I have much call to do that, but you get my drift.

A few months ago I was having trouble using the joystick to control my chair without leaving devastation and personal injury lawsuits in my wake. So, fine. Assistive technology to the rescue. The original control module has a garden-variety joystick and seven buttons, four of which actually work, two of which I actually use. I try out a couple of alternative joystick-like devices, find one that seems like it will work a little better for me, and add a couple of micro-switches so I can turn my chair on and change modes by just bonking them with the side of my fist. $1500 later, the people and property in my immediate vicinity are considerably safer.

Now, a couple of months later, my chair is starting to go unpredictable places again. Time, already, for another run with the Red Queen.

Every time I find that my previous assistive technology is no longer doing the job, I wonder how long I will be able to use the next ridiculously expensive device. I feel very selfish to be spending all this money on myself. With a kid in college and the adjustment to disability income, we could easily find other uses for it.

That's just the race for a mobility solution. For me, there's a whole 'nother race for a way to use the computer, and another to do pretty much anything else you normally do with your hands or arms or legs. Other people are running different races; maybe trying to keep up with deteriorating vision, or a bladder that behaves badly, or an unreliable short-term memory.

Every time I come up with a new problem, I fantasize that someone has already invented a magic solution. After all, I can't be the first person to have this problem. Thus far, there usually has been a solution available. There might even be a dozen of them. That's not to say there's one that will work for me the way I hope it will.

What I can do, and what I need to do, is different from anybody else, so a solution that will work really well for me (and Scarecrow) is different too. Sometimes the best solutions, for us, are ones we stumble across ourselves. For example, the finger-impaired among us can buy a gadget that straps to your hand to poke the keys on the computer keyboard. Since we probably also have trouble turning the pages of a book, there are several devices on the market of different design (and price tag) that will do that.

I use the eraser end of an unsharpened pencil, myself. I prefer an octagon shaped cedar wood casing, for aesthetic reasons, but there is room for personal expression here. You can even, in a pinch, use a pencil that someone has thoughtlessly sharpened, but be careful about using it to scratch your nose. It's really the eraser end that's the functional bit. An eraser that's been sitting around long enough to be oxidized and hard works best for poking keys on a keyboard, because it doesn't fall apart and leave crumbs. A new eraser that's soft and kind of grippy works best for turning pages.

There you go. My favorite home-grown assistive device. Scarecrow bought six 12-packs several years ago from Costco (I have no idea why) for less than eight bucks. We still have at least 5 3/4 12-packs left. In my race with the Red Queen, an unsharpened wood pencil still works for me where several more elaborate, and far more expensive, devices have been left in the dust. Gotta like it.

So, the eraser end of a wood pencil is my favorite home-grown assistive device. What's yours?

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