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  • Writer's pictureErin Clark

Destiny, disability.

It’s the UN International Day for (no, wait: ’of’) Persons with Disabilities. Every time I want to type out that title I have to google it. The language is so goddamn formal. I’m Canadian. I can’t retain that level of formality. In my head, it’s just called ‘disabled people’s day’. While googling it again for this post I learned that the UN declared 1981 the International Year of Disabled Persons. That is also the year I was born. I think we can call this destiny.

Recently I was asked about my thoughts on the benefits of dance. Dance is about movement and movement is about bodies and -oh boy- do I love to talk about my body. It has never occurred to me record myself during any of the interviews I have been giving lately. I just speak in verbose, unfiltered volumes. Leave it in the hands of those who would edit it. I hope for the best when it comes out. (so far, all fantastic). But this interview happened in Laura’s living room while I was using her couch as my cozy, NYC duplex. (You can see the edge of my massive pile of clothes in the bottom corner). Laura was in her bed while I was being interviewed. When she heard the question about the power of dance and how I was making it about bodies and disability she hopped out of bed and turned on the camera.

“I love it when you talk about how anyone could be disabled at any time, like it’s a natural state, not a scary bad thing. I just love the way you talk about that and thought you might want to have a video of it to hear it for yourself.”

She was right. I have never heard myself talk about it. Writing about it and depicting it in selfies are very interior, crafted and edited. There is as much time as I give myself to get it right. Talking is swift and unleashed. My untempered enthusiasm and raw thoughts. On the spot.

Exhilarating, no?

Since it’s my destiny and today is my day I wanted to share this behind the scenes clip of me talking about disabled and un-disabled bodies, where the only editing I did was to take out pauses and the verbal tick I have where I repeat the beginning of a sentence over and over until the end of it occurs to me. (It seriously reduced the video by a full minute).

But today is not only my day. It’s a day for all disabled people internationally. Which is like a billion people. A billion people currently excluded from pretty much all the good stuff. And also all the basic human rights stuff, too.

Society benefits from the inclusion of disabled people. And I don’t mean from charitable forms of ‘inclusion’. Charity is not progress. I mean, inclusion — where our contributions are actively acknowledged and sought out. In all sectors of society and life. I try to live in the world as though it is already that way. I have a gift for living in fantasies that I try to put to good use. but, in reality? oh god. We’re not even close. Even in countries where it’s easy to think accessibility and inclusion are implemented. Canada is still working on making work environments accessible and reducing employment discrimination based on disability. I recently read an article about a new university building in Toronto that won awards for architecture. And it wasn’t accessible. Like glaringly, grandly, garishly inaccessible. Give it an award for innovation, though! So, even in Canada, it is still true that getting an education while disabled is a magnificent feat.

Guess how disabled people are doing internationally.

Being visibly, actively, and fundamentally excluded from every area of life is the perpetual and central obstacle that I face. It’s exactly as painful as you can imagine. It’s personal and internationally political at the same time. My own private pain. My global issue. Finding ways of including myself, expressing it creatively, is my personal coping and my contribution. My epic inclusion adventure is the reason we’re all here, giving a crap about what I say in that video, waiting for more selfies of me in impossible places. Wanting to know what I feel and think about whatever is going in my life in the moment. The reversal in that never fails to astonish me. But I think it all comes down to something that I know, that I know quite easily and very openly, but that is insistently treated like a mystery and a secret.

Adaptation is magic. It’s breaking rules, making rules, and doing impossible things against all odds. It is off into the unknown with your wits and wonder (and hopefully some good friends) and seeing what happens. Adaptation, which arises in response to limits, is an expression of freedom.

By necessity, a lot of people with disabilities are perpetually on the pioneering edge of adaptation. Like, we live in a state of adaptability — it’s not just solve this problem, move on. It’s an entire perspective of approaching life. It’s a state of mind. One which able bodied people have a tendency to look at as a limitation. Remember how I called it freedom in that last paragraph? This is the great paradox of my life — the thing that everyone else labels a confinement, I experience as an expression of freedom in response to limits.

The interrelationship between mind, body, environment and others is too-frequently reduced to the presence of a mobility aid. The universal signifier of helplessness. The need to be in an adaptable state is lamented and the opportunity to include it in the range of human potential is overlooked. Right up until some form of adaptation is needed by an able bodied person, at which point they often feel terribly screwed by the total unfairness of the completely predictable need to be adaptable. Because, like, isn’t adaptability a fundamental factor of survival?

I am bewildered by the disdain people have for limits. Setting me entirely apart from ‘normal’ society because my limits are so unashamedly visible. Making examples and inspirations out of me — using me for cathartic pity. It bewilders me. Especially when you consider the fact that in a lot of cases, people with disabilities are all up in your society in the first place because of some very impressive medical and technological advances. We are literally the living proof and evidence of the human ability to work together and make some insane shit happen. Man sets foot on the moon, we celebrate. Lady lives her life in a wheelchair, we pity. Sure, maybe the scale is different here, but the essence to me is the same. We saw a limit, we adapted to it, if you want to, go ahead and say we conquered it. But then we throw our hands up at how impossible it is to make sure there’s a ramp, public transit, elevators — so that wheelchair lady can go to work?

Its just so lazy.

There is a connection between my thoughts on the body and my thoughts on me as the height of evidence of what human beings are capable of — and it’s not my vanity. All of our bodies are limited. All of them. That is not a special burden carried by disabled people. Getting to help us do things might make able bodied people feel more secure in their comparable lack of limits — but your body still has limits — and will incur more as time passes. I don’t say that to panic you. I hope, in fact, it could release you. Because I suspect, as I project my own lack of body anxiety back onto the able bodied world, that if there wasn’t so much fear of being like us, of having limits, of needing to adapt, to slow it down a second and think about the goal — if there was more wonder, more ease, and just a basic level of acceptance of the fundamental uncertainty of all things — I think full, all-our-human-rights-recognized-world-wide, contributions-valued, inclusion of people with disabilities might just happen as a natural result.

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