In planning this project it was suggested to me that I share my story as a way to connect with and reassure potential participants. Yes, I too, am disabled–wheelchair and all–and my experience has been one of learning to change with my disability as it changes.
I was diagnosed (after a lot of professional head-scratching) with an unknown form of muscular dystrophy. Doctors describe my disease as a slow progressive weakening, but it feels pretty speedy to me. At 10 I stopped running, at 15 I quit walking long distances, and at 20 I began using an electric wheelchair to get everywhere. I’m 25 now and each of these benchmarks–and the smaller ones in between–has changed my relationship to social expectations of how people get around.
I have recently moved back into my family’s home in North Carolina after finishing a Masters of Fine Arts at the University of Miami. This quiet life at home, as part of the large percentage of people with disabilities who are currently unemployed, allows me the planning, reading, thinking, sitting, staring off into space, and writing that this project–and my larger goals–require.
Presence is Progress comes from a desire to see people with disabilities in public places. I am usually the only visibly disabled person at the party or in the classroom or at the grocery and I wonder why, though I have some ideas. But I’d like to know yours.