The Sammy Shuffle: part 16

Being Me

Part 1: Intro

I’ve been thinking a lot about this lately.

I’ve always considered my disability to be kind of on the middle-ground, between severe and mild. I could have a lot more challenges, I could also have a lot less.

My disability, my body, and the ways in which it operates has had a significant impact on my life and on my experience as a human being. I’ve had surgeries, therapies, leg-braces, adaptive devices and accommodations. I am visibly different. And some things other people take for granted are bloody difficult for me to do, if not impossible– take for example, writing a standard test within the standard time, transporting liquids, ice skating, carrying laundry, or taking the stairs.

And yet I have a degree of flexibility in most situations. If the elevator is broken, I can take the stairs. If I want to initiate a bit of self-directed PT, I can get down on the floor (and back up) and stretch those hamstrings or make the conscious decision to stand tall and put one foot in front of the other, as opposed to “crutching it”.

This is how I see myself, my world; as a person on middle ground with a unique perspective, appreciation for innovation, adaptation and acceptance. My disability is a part of me, and I don’t think that fact or the differences in experience that it implies should be discounted.

I’ve known people who say I’m not disabled at all, not disabled enough and too disabled.

Often, people are impressed with my ability to function at a “normal” level so much that they tell me they don’t think of me as disabled. And yet sometimes I will be asked, for example, to down-play the number of stairs I’m capable of traversing, so that the powers that be may deem me disabled enough to warrant accommodation. When accommodations are made, sometimes it’s only a grudging, half-assed attempt, resulting in the amplification of my level of difference and difficulty, and validation of their perception that I’m just too disabled and can’t be expected to participate.

And this really, really irritates me. I don’t want to assimilate into the able-bodied world to the point that people feel they can choose to see past –or just not see– my disability, discounting both my reality and my experience as an individual. Nor do I want to have any part of that reality seen or represented in a overly positive or negative light. I am who I am. My disability is what it is. Respect my identity as a unique individual, please.

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