The price of inspiration (not safe for work)

This video is an excerpt of the 2009 Sins Invalid performance series. The piece was composed by Steve Angstrom, performed by Matt Fraser.

I had the piece described to me. For other non-visual viewers, Fraser has small or not quite completely developed arms and a thin body. I won’t ruminate diagnosis or disability, that’s not important. What is important is that Fraser starts his piece in boxer pose, using legs/feet and head to fight back at the (not safe for work) things being told to him. By the end, you here his screams as blood pours from his mouth and he’s down, beaten into a pulp by the ignorance, hate, and oft well-meaning things people without disabilities say to those with them. His body, broken and lifeless, is dragged from the stage.

As the piece finishes and the maniacal laughter of the voices Fraser has so courageously fought against drains out, I find that I am crying. I’m laying in a heap of my own vocal demons, swarming around my head. Instead of well-placed blows with legs and head, I’m using my words and a face set in anger ready for action and reaction. But like Fraser, by the end of the day the battle generally takes me down and I too am laying in a heap to be dragged to healing by someone who loves and cares about me. If not me, then another comrade trying to live life as a person with a disability is being held by my somewhat broken arms.

We get up out of bed, visible or in/visible disabilities in tow and walk into the world and face it. Often out of necessity we are poised for battle. We face the very voices Fraser’s piece uses. Inspirational comments take away our base humanity. Faux-role-modeling takes away our right to exist as individuals and make our own mistakes. Inappropriate questions about our sexuality or daily living tasks degrades us and renders us as yet another side dhow theatric for public entertainment. Asserting our independence and denying assistance angers those trying to ‘do good’ and turns us into mean and spiteful beings.

Our existence, be it visibly or invisibly disabled is not simply one of living a life to our own mandate. We aren’t permitted that mandate by so many bodies and voices. We are instead expected to entertain, educate, inspire and be grateful for any amount of attention the public or those who barely know us feel fit to put upon us. And rarely has it anything to do with the fabulous outfit, intelligent thing spoken, type of tea being drunk or even the weather. It has to do with our bodies, our health and our being.

And while Fraser’s work is intense and emotionally devastating, that type of barrage is still seen as appropriate. And the toll is seen as dramatic.

So how do we live? How do we fuck, fight, eat, drink, shop, find community, love, enjoy moments? In the peaceful spaces we can find – in the respite. In those times an able bodied person doesn’t say “oh how inspirational you are” but rather “hello, my name is ….. what’s yours?” and treats us as humans, in ways they themselves want to be treated. In ways that view the person first, the disability next.

Here’s his performance.

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One response to “The price of inspiration (not safe for work)

  1. Pingback: Body Impolitic - Blog Archive - » Too Many Interesting Topics! - Laurie Toby Edison: Photographer

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