What did ya’ do? And what did ya’ say?

When your disability becomes visible what exactly are you supposed to say for yourself? Are you, the disabled, obligated to say anything at all? Is it up to you to do something about the discomfort and awkwardness that all too frequently surfaces between you and those you interact with?  Although I am becoming more and more comfortable with my mobility aid, it has become evident to me that its presence often (er, almost always?) makes other people uncomfortable (ahem, I may have mentioned this in one or two previous posts).  So now the question seems to be, what on earth are we, the disabled, supposed to do about these situations when they arise? While I do firmly believe that the nature/extent/details of your disability are actually no one’s business and that NO ONE should feel obligated to explain anything disability related if she doesn’t want to, the fact of the matter is that in reality the “No explanation/No information” approach isn’t always feasible (although I assure you, I wish it were).  My recent encounter with Superior Superior is a case in point.  Let’s face it; Superior Superior, to name one, is my boss.  I can tell him that my disability is none of his business, I can tell him this in the most polite, innovative, and diplomatic way possible, but if I want to remain employed or inch my way up the absurd academic ladder, this is probably not the wisest approach.  So.  I suppose I must refine my question a bit:  What do ya’ do and what do ya’ say when the person ogling your mobility aid and asking inappropriate questions has power over your in an employment situation? Or a political situation? Or any situation for that matter?  On this one, I am utterly stumped.

And then.  There are those times when the questions are much less lethal, but exceedingly awkward. But not necessarily wholly uncomfortable or rude. For instance, with complete strangers, like the cab driver who glanced at me with shifty eyes in the rear view mirror, and said ever so boldly, “So, what’s with the cane?”

Paradoxically, I have found that I don’t really mind explaining my need for a mobility aid to complete strangers. As individuals who never knew my unaided self, there isn’t much shock and surprise when they see me using it. There is no sudden jolt of discomfort.  No “Oh my god why and when did you become crippled??!” look in their eyes.  Just (mostly) innocent curiousity.  And since I am an educator by trade, I don’t in these situations mind slipping into the teacher role and talking their ear off about Ehlers-Danlos and spina bifida and such for as long as they are willing to listen (They are the one’s who decided to open Pandora’s Box after all…) I tend to see these moments as opportunities.  I am not always sure they have much of an impact.  For example five minutes after asking me what was with the cane the same cab driver asked me if I was a double-agent for the KGB.  Clearly his mind had moved on to topics that are, at least in his view, much more pressing than disabled life well before mine had.  But nonetheless it was nice to have the chance to teach a little.  (I try not to be too pedantic, I swear. And no I am not a double agent, in case you were wondering…)

But.  It turns out I feel ENTIRELY differently when the question of my disability comes up with someone I do know.  Or rather someone I sort-of know. Close friends are an exception, an enitrely different jar of marbles if you will.   Some people are totally great about it.  They don’t stare (er, gape) at the Evil Aid. They don’t ask loudly with wild panicked eyes, “Oh my god!! What happened???”  Instead they look you in the eye and treat you the way they always have.  They may pull you aside discretely later and ask politely about the situation, expressing genuine concern.  This is, personally, the response I prefer.  But it’s not the one I usually get. And to be fair I understand why I don’t.  In my pre-aid, less visibly disabled life, if I ran into someone I knew sort-of well and saw her, seemingly out of nowhere using a mobility aid, I would probably be the acquaintence who asks, “Oh my god! What happened??” And I know that  I would probably do this out of genuine concern.  And moreover, I would probably see absolutely nothing wrong with it.  So why then, now that I am on the receiving end of these responses do I dislike them so much?  Why do I feel like answering each and every such inquiry with a curt “I’d prefer not to talk about it, thanks?” How acceptable is this response? I am leaning toward the belief that the level of acceptably depends on how well you know your interlocutor. But still, telling someone who may be genuinely concerned bluntly that I don’t want to talk about it seems a little rude.  Like, “Butt out, would ya’?” And every time I feel myself lurching toward this response I am reminded of the scene in Mighty Aphrodite, where the chorus leader encounters the surly Blind Seer of Thebes and comments, “My the handicapped are always cranky.” I don’t want to come across, in my new capacity as a Representative, as the perpetually cranky crippled girl.  But.  Still.  I just don’t know what to do or say in these situations.  And despite my serious desire not to be rude or to become the cranky cripple, I persistly discover that I don’t really want to say anything at all.  I don’t want to explain. I don’t want to inform.  I don’t want to educate. I just want to (still) be me.

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