When you're one of the only disabled people in a community full of ABs, you feel like a burden, like being different is wrong, and you aspire to be "normal". That's what society tells us, and when there's no one around to counter that assumption, that's what you're going to believe.
That's why it's so so so so so so so important to have a crip community. I'm speaking from experience. From kindergarten on, I was fully mainstreamed. I had one or two friends who had disabilities, but neither of them really considered themselves part of a disability community. And both of them were my age, so I had no older role models to tell me that it was OK that I was disabled and that it wasn't something to be ashamed of. There was no one to teach me how to advocate for myself. I learned everything as I went, going boldly where no crip had gone before - or so I thought.
It wasn't until I went to a camp for physically challenged children when I was thirteen that I really realized that other people had the same experiences - particularly in the school system - that I had. Stories of similarly annoying aides thrilled me; finally, I wasn't alone anymore! My whole world was radically shifted. I took my cue from the girls who had been there longer than I had, who had developed a sense of pride in their disabilities and who weren't afraid to flaunt it. I started calling myself a cripple and getting involved with disability-related activities. I immersed myself in disability culture. I finally felt comfortable in my own skin. Camp taught me these invaluable lessons that I will never forget: that being disabled isn't a curse or something to be ashamed of, but something to embrace and be proud of, just like any other heritage.
It wasn't until last year that I started talking to adults with disabilities. Through various crip events, I met a group of crips in their 20s and 30s, crips who had done what I was doing and lived to tell the tale. These crips served, and still serve, as role (or roll) models for me. When you're disabled, especially when you're creeping onto the edge of college and adulthood and all those scary things, there's always this fear: What's going to happen to me when I get older? How am I going to do X, Y and Z? Who is going to take care of me? Will I end up in a nursing home or similar institutionalized setting? Will I find a man who is accepting of my disability? Even if you are, like me, fairly independent, these thoughts still run through your head. These crips were living proof that yes, I could be a successful adult with a good quality of life. That reassurance was almost mind-blowing. I still worry about the future, but some of the mystery has definitely lifted.
So while the disability community may, in fact, be the largest minority, it is also unique in that it is extremely isolating. Unlike ethnic minorities, disabled children are often the only disabled people in their families. Families might not be supportive of embracing the crip lifestyle, forcing the child to conform to a non-existant mold of "normal". Even if a child has a supportive family, there is absolutely no substitute for contact with other PWDs, especially older ones. I think a great idea would be a mentoring program, kind of like Big Brother, Big Sister, where children/teens with disabilities are paired up with mentors with similar disabilities. What say you?
hi - just wanted to say thanks for your blog and this post. i really love hearing about your experiences and you have really made me start to think more critically about working with young artists with disabilities (which i do!). thank you! :)
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