‘Do you live in the community?’
She was pretty, about 25, a nurse at the Quadriplegic Centre of WA. I’d never seen her before.
I didn’t know what to say. I am a wheelchair user and was delivering fliers for a forum we were running the next day. I was shocked. It wasn’t that I considered myself better or different than the residents of the Centre, most of whom have spinal cord injuries – it was that she assumed that the usual place for people to live was in a C class hospital.
That, to me, was extraordinary.
I have a bit of a personal connection with that place. When I was eleven, my friend was shot in the back of the neck. He went to live there for a very long time, because there was no support. I still remember the smell of the place, the bore water stains on the brickwork, the small rooms with old hospital issue beds and hoists. Nothing has changed, really. Not even the pictures on the walls.
It took me a few years to work out what institutionalisation looks like. That your cup of coffee being lukewarm or cold can be far more important than your care or that leaving the place was practically impossible because eighty six percent of your pension goes to the institution. The carpark is filled with young blokes drinking or smoking drugs or sitting with their mothers and trying to ignore the look of helplessness in their eyes. It’s a dire place to visit and for many, a dire place to live.
But that one line struck me – do you live in the community?
It negated every single identity I had – mother, wife, employee, support worker, home owner. It made the assumption that the only place I could live was a 12 x 12 room and if I did not, I was somehow exceptional.
It is the same attitude that leads to drunk young men giving me a thumbs up in a pub or people telling me that I’m brave or that they ‘don’t know how I do it’. Good on you, you took off your crocheted blanket and left your cats at home (no offense intended to Glenda Lee). I must be extraordinary, because I am not like them and yet I try very hard to live a life like theirs.
I don’t blame them too much. They don’t see us in their workplaces or on the street or in their schools or out and about. We’re kind of rare and unusual and it’s what leads to us being regarded as ‘special’.
I look forward to that changing. Maybe not in my lifetime but in my children’s. No double takes when a wheelchair user rolls through a shopping centre, no articles about the time that intellectually disabled man got married. I want us to live in, with and together.
And most of all, I want the term ‘in the community’ to disappear. It’s not a magic tourist destination.
It’s where we all should live.
Sam is a disability activist, consultant and social media assassin. She spends far too much time working on disability issues and far too little time patting her bulldogs. To connect with Sam, find her on Facebook.
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