Coming at all this from a different direction.
Searching for a cure? Not sure about that.
Surrendering? No, not ever.
What I am reading right now:
“Disability Culture and Community Performance” by Petra Kuppers
He
is not dancing with us, but merely observing, since he just added a new and still metal-stapled scar on his abdomen from a recent fall. He is dystonic, a condition similar to strong cerebral palsy, and I can see his foot reaching out into space, elegantly folded over like a ballet dancer in pointe.Neil is crunching and rustling right now: he’s taking the opportunity of our extended shape improvisation to eat a sandwich, and contorts his body to get his mouth over the bread.
To watch Neil
eat is like a study in concentration. He puts great effort into placing limbs, face and food into just the right relation to one another. This twist is necessary and a work of art – but how ‘strange’ is it to Neil, or to the observer, including the many photographers who have fallen in love with him over the years and have created a catalogue of images of his highly photogenic everyday life?The plastic bag rustle adds to the soundscape of moving bodies, hands breaking falls on the floor with a bang, zippers and fabric whooshing on the cool wooden floor.
In this dance class, we are in a laboratory of disability culture.
I live to explore, to discover, to share.
I began life disabled.
I did not know it, my parents, teachers, did not either.
We suspected there was something but had no idea what it might be.
So I learned to get on with life and to not let the anomalies stand in my way.
At ten years old I suddenly became extremely intelligent. At long last I was able to appreciate lessons from around me as it all came into focus.
Everything immediately under my nose had always been there, seen and apprehended, but anything further away was, well, not there I suppose. It was blurred, out of focus.
It took a visit from an optician, when I was ten years old, to the school for the difficulty to become apparent . I could not even identify the very top and largest letter on his test card.
Show it to me in a book and I could see it, but on the black board it did not, in my world, appear. So for many years a large slice of my primary education was missing on many levels.
Of course this has meant that I needed to find my own way through life. I have made great discoveries and also terrible mistakes but this has given me a different take on this stroke thing and how to deal with the aftermath.
I won’t say I have the answer, just that I come at this from a different direction.
keep on keepin’ on
