Saturday, March 24, 2007

Ask no questions, hear no lies

In recent weeks there have been a few posts about being asked about your impairment by strangers, the ones that I can remember were by Bint Alshamsa at My Private Casbah and then Imfunnytoo wrote about it just last week. If anyone can remind me who else has written about this in the last month or so, please do so.

As I’m sure I’ve said before, I find it a terrific bore to talk about my condition as a pathology. I think this is partly due to my particular label, partly due to the fact that illness becomes an extraordinarily boring subject to those of us with it, at least after the initial wow, my body is complicated! phase (during which we may go into some detail without invitation, subject complete strangers to Powerpoint presentations and consider taking a degree in medicine in order to better understand ourselves and formulate a cure). However, why lay people you hardly know would be interested, I don't know.

Bint describes how in the American South, she doesn't feel uncomfortable about people asking, because folks there talk about anything. I found this interesting; Bint has cancer, which I guess everyone has heard of and understands the idea of. I imagine there are some uniquely troublesome reactions (my own Gran won't even say "the C word" out loud (or indeed the word cancer, he he)). But I wonder whether I would feel differently if I had a different label. As it is, for me, such conversations almost inevitably lead to
  1. Confusion about medical labels. “Isn’t that what Stephen Hawking has?” Uh no. There are many long words and acronyms in medicine, Stephen Hawking only has a small handful.

  2. Misplaced empathy. “Oh, I think I have a bit of that; I have all sorts of aches and pains and I’m tired all the time.” or "I know how you feel; I had a cold last month and I didn't feel like leaving the house for days."

  3. Overblown sympathy. "Oh my! That must be awful for you. I can't imagine how you cope. If I had that/ had to use a wheelchair/ couldn't go clubbing at the weeknd, I would kill myself!"

  4. An anecdote about someone they knew/ read about in the paper/ just invented who had this condition and died horribly/ never needed a wheelchair, in fact ran several marathons/ recovered completely through the power of North Tibetan Flatulence Therapy. Often this is combined with further confusion about medical labels.
And it’s so boring. The fact someone is subjecting me to this nonsense suggests we will never be friends. Some people with chronic illness feel it is useful to educate people about their particular condition, to raise awareness, but I soon came to the conclusion that the sort of people who ask don’t really want to understand. After all, most people I meet don't ask. Most people who get to know me don't ask. I can't recall a question from a close friend about my condition which wasn't framed with "I hope you don't mind me talking about this stuff, but..."

I’m not very good at telling people that it’s none of their business. In fact, I have never done that. Fortunately people do tend to ask the wrong questions. Questions such as

“So what’s wrong with you?” which is really asking for it, frankly.

“Well since you ask, I guess I’m a bit of a perfectionist, and I think sometimes people are intimidated by my intelligence and good looks. So, what’s wrong with you?”

Otherwise it is “So why are you in a wheelchair?” After all, nobody ever asks when I’m not using the wheelchair; when I behave differently people assume I have a temporary illness, ladies’ troubles or else am an eccentric.

This is met with the polite and perfectly accurate, “I have a lot of pain my legs which means I cannot walk very far.”

This is sometimes followed up by “Why is that?”

Which, in turn, is met with the polite and perfectly accurate, “Because my muscles don’t metabolise oxygen properly, which results in excessive lactic acid production.”

This is almost always where it ends. Most people either read that I’m not going to give, assume my condition is rare and complicated or else feel that it might get very technical if they question it any further.

While I'm here, anyone seriously interested in the study of social disability may be interested in reading this paper about the hierarchy of impairments that exists in the minds of both disabled and non-disabled people - something I have written about before and read about elsewhere, but only really seen it touched on in a rather vague and anecdotal manner in academic writing.


BloggingMone said...

This reminds me of a true story: On one of these disability awareness days or whatever it was, a boy and his Dad were asked to come up to the stage. The boy was about six years old and blind. On stage in front of all the people he was for some reason asked, if he knew why he was blind. Very confident he said:"Yes, of course I know! I am blind because I can't see!" Everyone was giggling a bit, but Dad, who obviously had prepared his son for questions like this supported him by suggesting that there was something else worth mentioning. Son:"You mean about it being ge-ne-tic?" He was struggling to pronounce the word correctly. Then he went on: "Well it is about genes, you know? Everyone has got them, they are aaaall oooover the body. And my genes are all blind!" I was there to interpret all that and nearly collapsed laughing. It is the kind of answer some people deserve, I think.

Anonymous said...

Hmmm Insurocorp are going through a phase of charging anybody injured but attemtping to do any work at all, including mowing lawns, with fraud for working while having medical certs saying not being able to.

Another words no matter how many Doctors and specialsists say someone is injured.

If that person attempts to work at all then they must be putting it all on!

I never mention my existing dissabilites, even to Doctors and it is amazing how long it takes people to even allow themselves to notice you are a bit of a crip.

Or the lengths people will go to to assure you that you appear normal and not a crip.

I have been through mysriads of assessments of my injury condition over the years and only very brief mention has ever been made of my existing crippidness.

So hopefully one day soon I may too be set up for a fraud charge by insurocorp for attempting to keep working despite being assessed as injured.

just Imagine the quandry I could create not only through them having my identity remanufactured to show I am not injured.
But also by my introducing life long physical dissability as well, including dire predictions that I would not be able to walk, then would be in a wheelchir by 40 and all the other things experts say.

Should be fun watching people squirm with all that.

A word of warning though, my injuries cetre maninly around chemcial exposure and developed senstitivities, NEVER, ina weak untinking moment agree with someone that it's abit like having chemcial induced Aids!

Nothing kills off employment more quickly!

I do the impossible to prove to myself I can.

People seeing me doing the impossible become convinced I am misleading them rather than admit they, in my position, could never achieve the things I have done or do!

Kids on thinking back are always very straight forward at asking why I limp or wear funny boots I explain then we get on with the job at hand!
XRUBL (How appropriate ocne again!)

bint alshamsa said...

That paper was extremely interesting in some ways. I think it's true that those with visible disabilities seem more likely to seek out or create a community of others with the same condition. Having schizophrenia I must say that I have never really even thought about trying to find others with it to hang out with or befriend. But then it's a bit complicated with me because I go back and forth between visible and invisible status depending on what it is that's wrong with me on any given day.

By the way, I really hate those wonder-crip stories too.