Who am I? What is it? When is it?

When I was younger these questions were posed to me a lot: "what is it like to be in a wheelchair?" or "what's it like to be disabled?" Growing up with these questions in mind I would frequently get confused as to what a disability is. Is it a feeling? An identity? A mentality? A diagnosis? All of the above? And how do I incorporate all of those into my daily life? Should I be conscious of being disabled all the time? In other words should I always 'feel' and 'think' disabled?

Needless to say I was and still am one to over think things into a pulp. At the risk of already growing 'silver' hairs in my early 20's, I have done my best to not mull over those questions 24/7. Instead, living those questions and figuring out the answers in the process of life have been far more interesting for me. Still, once in awhile I find myself slipping back into the cycle of self-wonderment. Recently I started thinking about the times when I do not consider myself 'disabled' in an attempt to understand the times when I "am" disabled.
For instance I always begin my day "not disabled." I wake up in bed, look at the ceiling or out the window and stretch. In those sleep-wake seconds before I turn to look at my empty wheelchair parked next to me I do not consider myself 'disabled.' In fact, to be quite honest, I consider myself rather be asleep because I am not a morning person. Then when I reluctantly clamber out of bed and slide into my wheelchair I am still not disabled. I'm just grumpily trying to figure out what crevice my seatbelt has slipped to now and prepare to sloppily push myself towards the bathroom. As I get into the shower and then get dressed I'm not disabled, I'm just trying to throw clothes on my body and get myself out the door. I'm not a make-up person at all. In my blunt opinion whenever I think about putting make-up on myself I think that somewhere in the world a clown is doing the same thing... and to be honest, I live my life to entertain myself, not to entertain others.

Maybe around this point in the morning I first notice that I am 'disabled.' I look at myself in the mirror that is angled down towards me, the reflection of me sitting in my wheelchair looking back at my now 'a-little-more-awake' self. I notice how the bowing of my ribs almost forms a barrel, but then when I think of barrels I think of too much beer and once again for those .09 seconds I am not disabled. I am just a 20-something who likes to party with her friends. And then I know that despite having length to my femurs my lap is somewhat non-existent because they too are bowed  from too many fractures and misshaped collagen. I scrunch up my face in an attempt to make it less triangular but after awhile my face muscles will get tired and things will slip back into their broad forehead and cone pointed chin. My arms were never like airplane wings when I played that game as a kid, it was more like I had the arms of Frosty the Snowman - the crooked branches of an old tree. The lower half of my arms drop down past the bend of my elbow, it's like an upside down shrug. But even still, after grinning at my overly large head in the mirror and puffing up my cheeks to make a monkey-face I don't consider these features of me 'disabled.' They're just me. They are all characteristics that can be categorized as symptoms of the O.I. Like each of the different designs on the gingerbread cookies my friends and I make every year during the holidays, they're distinctive.

After all of this maybe then, I remind myself I am disabled? I head out the door and wait for the van that picks me up, or for someone to lift me into the car and put my wheelchair away. It's probably in the van where I am sitting for sometimes 5 min or more - that I think "just another part of the process." And I watch as the driver puts the useless velcro strap on me, then fiddles with the wheelchair tie-downs, then fiddles some more with the seatbelt (even though I already have a seatbelt). So by the time the entire process is done I feel like I am actually on the way to the insane asylum from all the straps, and not just ... on my way to work, or to cause a ruckus with friends. And sometimes on that van there are old people. And never will you see the miracle 75 year-old totally ripped grandmother on the van - I mean, OLD people. They have walkers and oxygen tanks and admire the speed at which I am able to zoom in and out of the van - and the precision with which I am able to park.
But then after all of that is done and I go about my day: as I wait for the elevator, or the accessible stall, the construction workers to move, look for the curb cut, look for the accessible entrance, hope the car sees me despite being short, raise my wheelchair seat to reach the bank teller - I am not thinking "this is me being disabled." I am only thinking "how do I accomplish what it is I need to get done?"

Of course this mentality is much "smoother" for me now that I am older and do not fracture as much. But even as a child when I did have more casts on more frequently, I didn't think of breaking bones as having a disability, or the times when I needed my wheelchair reclined as 'being disabled.' It was just "how do I continue to go on living?" And now as I'm older when people ask me "what is it like to be disabled?" I want to ask them back, "what is it like for you to live?" I may not know much but I think I'm beginning to find out that the answers are not too different from one another after all.

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