On Invisibility. And Its Absence.

Lately I have been thinking a lot about (or perseverating on, depending on how you look at it) visibility.  Before my disability was visible to the world at large, I prided myself on my ability to blend into the crowd, to observe what was going on around me without being noticed.  In my new life as a mobility aid user, those days are (mostly) over.  Actually one of the first things that I noticed when I stepped outside with my crutch was that mobility aid employment draws attention.  People look at you.  A lot.  Maybe not as much as you think they do. Or for as long. But still. Folks are watching. On the bus. In the airport. In the check-out line. In the (too narrow) aisles of your favorite fashion outlet. In the crowded cafe, as you search in vain for a discrete place to stash your aid.  They see you. Trust me.

I know. I know. Duh, right? But still.  The experience of being consciously and suddenly observed EVERYWHERE comes as a shock to even the most well informed system.  I dare say, this experience of being scrutinized is all but impossible to comprehend unless you’ve experienced it yourself.  (Perhaps this is the way the characters in People magazine feel all the time? Perhaps not.) Anyway.  For me, the first hurdle to be cleared on the ‘mobility-aid-user’ identity track was my own self-consciousness.  Being suddenly aware that I was being looked at, I became suddenly (and somewhat unpleasantly) aware of myself. Where I was sitting.  How I was typing. Sipping my coffee. Asking for information.  Putting on my coat.  It was as if I had become bizarrely and painfully aware of my own quirks and mannerisms. And while this experience no doubt helps one become better acquainted with oneself (and may even help one get rid of one or two unwelcome personal habits), I found it rather distracting.  I would, for example, MUCH rather devote myself to the pleasure of drinking my coffee than to the experience of being observed while drinking my coffee.  But, as a mobility aid user, the gentle feeling of experiencing the world relatively unselfconsciously is one of the things you forfeit.  Fortunately, the more I have used my aid in public, the more accustomed to it and comfortable with it I have become.  This newfound familiarity along with really knowing that people are just gonna look has helped a lot. My self-consciousness has dissipated; I find myself distracted by it less and less and now usually only in situations where I have never walked aided before.  I no longer feel as if EVERYONE in the room/on the street is watching me move.  I can even just begin to imagine a time when I become so comfortable with and adept (gasp!) at using my crutch that I will be (mostly) unconscious of its presence. We’ll see…

But.  There is one other (larger) visibility issue that hasn’t really dissipated.  Quite the contrary.  I have learned that there is more to using a mobility aid than its actual implementation as a tool.  The aid (or aids) you use, not only makes you visibly Disabled, it actually becomes part of who you are.  Part of your physical self, a kind of detachable corporeal attachment.  You find you NEED to know where it is at all times, even if you aren’t using it.  You get nervous when someone moves it without asking, or you think it might be inaccessible for a brief period. (For example, it seems that canes and crutches are very commonly shoved to the back of aircraft overhead storage bins by both unthinking (er, inconsiderate? Maybe too harsh?) passengers and flight crew as they attempt to make room for giant roller-board suitcases that exceed the on-board baggage limit. I have experienced this a couple of times. Once today.)  You feel genuinely incomplete without it.  And since this physical addition is (usually) visible, it automatically intercedes into everything.  It becomes part of every human interaction, no matter how fleeting or insignificant, that you ever have.  It obilterates your anonymity and makes you a representative of sorts.  Aided, you are Disabled, whether you like it or not.  People may stare or sneak peeks at you for different reasons, but it seems to me that one of the main reasons we are watched is that others are genuinely curious about how we do it.  How is it that we manage to get through the same world they do with an appendage or appendages?  How can we possibly accomplish our everyday tasks, the ones they perform without thing, with this additional and unusual thing that we have?  How does the (weird) way we move alter the material world as we pass through it?  How does it alter them, as they experience that world in our wake?  I wouldn’t say I’m thrilled–especially as someone who used to pride herself on her ability to move through the world anonymously–to have people staring or stealing glances at me.   But.  I don’t usually mind being a representative.  I don’t really mind showing folks what aided mobility is like.  And on most days, I don’t really mind demonstrating how I do things.  I hope that people will learn from what they see; I hope they will learn that mobility tools enable, they don’t interfere. It’s a responsibility I’m mostly willing, and at times even pleased, to accept.

But. One disclaimer, because I just can’t let this post end too optimistically. (Optimism is not my natural state. Sorry.) Visible disability may create representatives, but those representatives are not like corporate or governmental representatives: They cannot step down from the podium, turn off the camera or the microphone, go home, take off their work costumes, relax, and ‘be who they really are.’ When someone relies on a mobility aid, she may rely on it more in public than she does on her own familiar terrain.  Most or even all of the time she has to play the representative role.  And sometimes, that totally sucks.  Sometimes she just wants to blend into the background. To be anonymous. To be left alone.

I am discovering that such contradictory feelings seem to be a significant part of the aided mobility experience.  Indeed, it seems that they are what makes the visceral reality of that experience so brilliantly complicated…

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