Saturday, July 31, 2010

The Importance of a Crip Community

This is my post for the August DBC at Brilliant Mind Broken Body. The theme is distance and I dearly hope I didn't stray too far off that topic. Hope you enjoy!

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?

Wednesday, July 21, 2010

It's not that simple.

My post for the July Disability Blog Carnival. Considering I was not home and did not have access to a computer for the majority of the month, I am amazed that I can actually get a post in for this month. I am awesome. Onto the post!

Recently I've been working on a huge milestone for me - learning how to drive. This will be an extraordinarily difficult task for me, but in light of a few recent paratransit fails, I feel it's necessary for me to know how to drive in order to have any sort of independence at all as an adult. But I tell people that it's going to be difficult for me to drive, and I get well-meaning, but idiotic comments like "fill-in-the-blank random person with completely unrelated disability drives, so you can too!" or "You can just get hand controls!" It's not that simple, people.

OK, so I might need hand controls, but that's not what I'm worried about. The thing about CP is that it has some visible, evident parts to it, such as the whole my-legs-don't-work-that-well thing and my obvious spasticity, especially when I'm tired. And it also has a lot of non-evident parts to it, especially in my case.

Partially because of weak eye muscles causing my eyes to drift in/out, partially because I think it's part of the brain damage that caused the CP, I have major problems with depth perception and directional skills. I always had trouble with left and right - even now, I have to think for a second about which hand is my right and which hand is my left. It took me a very long time to grasp the whole "when I'm facing you, your left is my right and vice versa" concept. That alone could be catastrophic when driving, when you have to make split second decisions about which way to turn, or who has the right-of-way. Even studying for my permit test was difficult, because it was hard for me to visualize the scene when they talked about left and rights. I was infinitely relieved when none of the left/right stuff was on the actual test (I passed with only one wrong!).

On top of the directional stuff, though, is the perceptual stuff. They're kinda related and I usually group them together as perceptual/directional issues. Problems with depth perceptions mean that I have trouble seeing in 3D. For years, this had absolutely no impact on my life whatsoever; all I knew was that I couldn't see the fly pop out when they asked me at the eye doctor's office. Then as I grew older and more aware of my surroundings, the loss of depth perception started creeping into my "real life". I have trouble seeing things on top of other things if they are the same color or pattern. For instance, if there's a puddle on the ground, I don't always see it because it blends in with the ground, and I don't always realize how deep it goes. I've stepped in many a puddle this way. Also, if there's a step that's the same color/pattern as the floor, I don't always see it, and I've had a few scary moments where I've almost fallen down the stairs because I didn't see the step. This could also seriously impair my ability to drive.

Now after reading that, you probably think I'm crazy for even considering driving at all. Most of my friends and family seem to think so. But the thing is, if I don't drive, there's a very good chance that I won't be able to go anywhere independently when I'm living on my own. I can't take public buses because if the bus stop is more than like a block away, I can't walk to it and if the bus stop doesn't have a seat, I'm seriously screwed. I can't take the scooter because who knows if the bus will have a working lift, and then I have to worry about if the place I'm going to is accessible. I can't get to a train station on my own if it's even remotely far away, and I can't stand waiting for a train. Not to mention with my directional issues, I'd be petrified to be in a big train station by myself (I'm thinking of a few in NYC...). And again, separate issues arise if I bring the scooter - will I be able to get it onto the train? Off the train? Will there be a spot for it on the train? And will my destination be accessible? And paratransit is so ridiculously unreliable that it's barely even an option. So unless I drive, I'm looking at a fairly bleak future limited to the few places I can walk/roll to.

I'm not saying driving is completely impossible for me either - I know I can do it, it's just going to be difficult. I'm realistic with myself, and I know that driving isn't going to be easy. Which is why it annoys me when normies, even normies that are close to me, act like just because my physical issues are relatively mild, that driving is going to be easy-peasy-lemon-squeezy. That's not the case at all, because as much as the evident aspects of my CP are going to complicate driving, the non-evident aspects are going to complicate driving even more. But I have faith in myself. I should be getting a driving evaluation before the end of the summer and from there we can move forward onto actual driving. So watch out for Spaz Girl on the road everyone!