OK OK

Dash it all!

I don't like, and have written about it here before, those 'disability awareness' exercises where people titillate themselves by rolling around in a wheelchair and then get up saying, missing the point entirely, "I could never cope with that." Well people do cope - so shut up. Sorry, but those 'games' annoy me and they seem to be more about people discovering things about their character and their courage than about disability and my life. But I've had a few people beg me for an alternative, an idea, many saying, correctly that I shouldn't criticize without coming up with options.

So I have.

It begins now ..

Try to look at my writing, now, this paragraph, with illumination. Writing is awkward but you can follow what I am saying. Do you worry about my inability to click my laptop buttons such that words flow smoothly? I annoy 'moi' and probably you by doing what I am now doing. But as I do it, it smooths out, I hit buttons quickly now. My mind works hard, HARD. But I finish what I start.

It ends now ...

I am exhausted. That took time. That took energy. That took determination. That took creativity. I was constantly thinking, constantly looking for ways to do what I wanted to to and say, even though not clearly, what I wanted to say. I set myself a lipogram which, if you clicked, you'd see, is a form of constrained writing. That paragraph above was written without using the letter 'e'. It was really hard to do, but it was doable. To me, setting people about the task of writing a story about their dog, their cat, their friend, their child, without using the letter 'e' would give some idea about the mental gymnastics involved in disability. Disability isn't about not having a cut curb ... well it is but it isn't ... it's about figuring out what to do about the fact that there isn't a cut curb. Coming up with options, coming up with ideas. constantly thinking, constantly evaluating what might or might not work.

I see this too with people who have intellectual disabilities when they get stuck on something. Trying desperately to figure out what to do, how to act, what comes next. Disability isn't a passive experience, it's an active one. It's trying to interact with a world that isn't easily accessible. I am more often mentally exhausted by the experience of disability than I am physically exhausted. Even in days that go well, those days have gone well because I've thought, and planned, and developed secondary plans, and reviewed options upon options upon options. It's tiring.

It's a bit similar to typing words into a string for you to sit and look at and say 'I got it!' (that was a lipogram)

Whew, I don't want to do that often.

No, it's not glamorous like riding around in a wheelchair laughing, fully knowing that you can get up at any time. No, it's not like pouring water into a glass wearing a blindfold. No, it's not showy. But it does get the point across. I tried this out on someone the other day who wanted to know why someone he worked with was always happy in the morning and always tired and a bit grumpy in the evening. There was nothing medically wrong. The fellow I was talking to made like the person was being willfully difficult in the evenings. I suggested that maybe, by the end of the day, he was just tired, really, really, tired. This self same staff gave up after trying for five minutes to write a sentence without 'e' ... he looked at me and said, 'this is really hard work'. I suggested that the fellow he supported worked hard like that all day every day. I suggested maybe developing an evening routine that was enjoyable, full of things the fellow chose to do - that he'd choose things that were comforting and less challenging than his day had been. It worked. Everyone is happier.

So there, happy?

I know, just know, that others with disabilities may not like this. Well, I don't really either, whatever happened to empathy? But I tried to find something that might have meaning without being demeaning.