I just had my four year anniversary as a wheelchair user. I don't keep track of these things, but Joe does. He's great on dates and remembering when things happened. We talked a lot about 'the day I became disabled' and the scary days that led up to the wheelchair. It's a story I don't tell often, I've told very few people. I managed to tell a friend the other day, as we had a long ride together in a car, the whole story from start to finish. It was surprisingly difficult to tell. I'm not sure I have emotional distance enough yet from my own story.
Over those four years of wheelchair use, I've grown as a person, I've grown as a clinician and I think my understanding of who I am has changed. Even though I've always been 'different' ... fat ... gay ... sensitive, I still very much experienced the 'privilege' and 'entitlement' that goes with being able bodied. I didn't see the world as it existed for others. I didn't see lousy curb cuts. I didn't see single steps into stores. Access, to me, was a given. All that changed, simply by sitting down.
Suddenly I became the one who sat in waiting rooms, rather than the one who kept people waiting. I became the one who was being assessed, rather than the one doing the assessment. I became the one who wondered what others wrote about me, in front of me, while we were talking, rather than the one who casually took notes. I became the one that was the other. It was a shock to my system. It was a shock to my way of thinking. It woke me up to a world that was much different that I had known it to be.
Today I had to see my doctor and a specialist to talk about my disability, my mobility and, of course, my health. After reviewing that I'm healthy and active, decisions were made about future and about tests and about medications. Then, suddenly, we were talking about living with a disability. The specialist wondering how I was coping with 'the rampant, the unacknowledged prejudice' that comes with disability. I was a bit surprised. But suddenly the three of us, with Joe quietly listening, talked about life as a person with a disability in a world that worships perfection, as a person who moves differently in a world that fears that very difference. It was odd. It was good. It was wonderful actually. But it was odd. I didn't think that Doctor's knew, somehow, about prejudicial attitudes.
I left realizing that the discussion I had just had, I needed to have. I needed to talk really openly, without reservation and without fear, about who I am ... now. How I live four years after. Being disabled isn't so much about disability, as everyone knows, it's about much more than that. It's about living without the privileges of others. It's about finding the word 'self' inside the word 'diagnosis' ... it's about losing some things and gaining others.
We didn't have a cake with four candles on it.
We didn't have a celebration.
But we did have conversations, with friends, with doctors, that we've never had before. In those conversations I discovered a vocabulary I didn't know I had. A vocabulary that allows me to finally begin to say the things I have yet to say, the things I truly need to say, the things I'm still a bit afraid of saying.
Stay tuned ...