Friday, July 30, 2010

Disability Carnival #68 and Evidence

Looks like it is time for this month's Disability Carnival, where a number of disability bloggers write about a common theme, and we all get to enjoy the results! This month's theme is evidence, and you can find it here.

I may try to write something for the next one, if I have the spoons and the confidence. I do not know if there are any pre-requisites for doing so, I will find out.

Deeply Problematic is a blog I have been following for at least a few weeks, and spent some time going through the archives until I ran out of spoons.

I find this theme very interesting, because the first thing that comes to mind, for me, is that a lot of people seem to want evidence of my disability. Since lupus is almost invisible (except the damn mask -- but that only means something to people in-the-know, as mine is pretty mild), I am often asked exactly why I use a cane or a wheelchair, or why I am sick or fatigued so often.

I suppose I could show someone my handicap parking tag, or my receipt for it, or my blood test results, but I will be damned if I will do that. Medical professionals can look it up themselves, and the general public can kiss my ass if they think I am lying.

You may think that only assholes does this sort of thing, but even well-meaning, usually polite people will ask about my cane or my chair, and react as if I am the one being rude by saying "It is a long story," and leaving it at that. At a recent convention, I had to say this three times to one person, and eventually had to end it with a polite version of "No, I do not want to talk about it with you." What the hell?

I only let people I really trust see me at home anymore. I think watching me get around just fine at home and need an aid out and about just confuses people more. At home, the furniture is situated so that there is never more than 2-3 steps where no support from the furniture is available, and I know how to fall if I do fall (which I am unwilling to risk in public). Also, I can choose when to stand or sit or lay down. Outside of my home, I do not necessarily even know if seating is available.

Oddly enough, my cane gets more comments than my chair does. I don't mind the folks that think it is neat, because, well, it is. It is a really nice clear Lucite piece. I bought it because it was about the same price as other canes, and my hope was, since it was transparent, that people would not even see it most of the time. That kind of backfired. People notice it a lot! I do not mind the folks that like it, I mind the folks that actually ask me if I need it, or just carry it to be cool. Yes, it does really happen. 

Parking lots drive me nuts, because I feel like I should use my cane, even on a good day or a short trip, so people do not resent me when I get out of the car looking "healthy." Apparently there is some stereotype regarding how I should appear, and I do not fit it. Yeah, I know, "but you don't look sick!"

I went through that phase where I wished I had a missing limb, or a very visible lump, just so people did not have to ask. Eventually I grew out of that to where I am now, which is being belligerent about them believing that they need to know or have a right to ask. I do not know if there is a phase that comes after this one.

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