To Carly Fleischmann (And Others Like Her)
A bit of an intro: I'm halfway through reading Carly's Voice, and I'm torn between liking Carly's wit and assertiveness and feeling sad at some of the things she says, about wanting to be normal. Although this is addressed to Carly, it's really for anyone who longs to be normal and is far from being so.
I am autistic too, Carly, though my autism is much less severe than yours, to the point where many people argue about whether people like me really have the same condition as people like you. Though I do think the entire spectrum shares some commonalities, in society's eyes you and I are clearly completely different, and I recognize that.
But there is one thing all disabled people share in common - we're seen as broken, as less than full people. There is a cult of normality in our society. People claim to be accepting of diversity, but really, our society much prefers to make it invisible. If you're different, they try to make you fit and pretend your differences don't exist, and if they can't do that, they try to hide you away and forget you're even there. Things are getting better, but it's a slow process, and too often people ping-pong from the one option to the other one, instead of giving us what we really need.
I know a boy who I suspect is like you, Carly. He hasn't found a way to communicate, but I suspect he knows far more than he can say. I worked with him for a couple of years, volunteering with a physical activity program. I couldn't find the way for him to communicate, but I spoke to him as an equal, telling him things in case he understood them. And I found a way to talk to him with my body, flapping my hands with him and sharing the little sensory things he focused on, like the way the light plays on the surface of the water and creates flickering shadows on everything underneath. Some of how he communicates was more familiar to me than any of the neurotypical people I've met - it's like he spoke a language I was meant to speak, but have spent my whole life suppressing. The things I've longed to do, he was unable to stop himself from doing them. Though he and I have lost touch, I'll always remember him.
I often wonder how he feels inside. I'd love to hear him tell me. But if he said he wanted to be normal, like you do, how would I feel then? Extremely sad. There's something wonderful and special about the way he is. Even if society can't see it, I certainly can. A world without people like him would be missing something important. Not something that can be measured by the usual measurements, like careers and families and inventions and artistic productions (though I'd love for him to achieve those things, if he wants them) but by something intangible.
I hope that someday, Carly, you will see what makes you different is not entirely made up of bad things, that there are good things in the bundle too, and that all of it makes you Carly, and you're a special, wonderful person just the way you are.
I am autistic too, Carly, though my autism is much less severe than yours, to the point where many people argue about whether people like me really have the same condition as people like you. Though I do think the entire spectrum shares some commonalities, in society's eyes you and I are clearly completely different, and I recognize that.
But there is one thing all disabled people share in common - we're seen as broken, as less than full people. There is a cult of normality in our society. People claim to be accepting of diversity, but really, our society much prefers to make it invisible. If you're different, they try to make you fit and pretend your differences don't exist, and if they can't do that, they try to hide you away and forget you're even there. Things are getting better, but it's a slow process, and too often people ping-pong from the one option to the other one, instead of giving us what we really need.
I know a boy who I suspect is like you, Carly. He hasn't found a way to communicate, but I suspect he knows far more than he can say. I worked with him for a couple of years, volunteering with a physical activity program. I couldn't find the way for him to communicate, but I spoke to him as an equal, telling him things in case he understood them. And I found a way to talk to him with my body, flapping my hands with him and sharing the little sensory things he focused on, like the way the light plays on the surface of the water and creates flickering shadows on everything underneath. Some of how he communicates was more familiar to me than any of the neurotypical people I've met - it's like he spoke a language I was meant to speak, but have spent my whole life suppressing. The things I've longed to do, he was unable to stop himself from doing them. Though he and I have lost touch, I'll always remember him.
I often wonder how he feels inside. I'd love to hear him tell me. But if he said he wanted to be normal, like you do, how would I feel then? Extremely sad. There's something wonderful and special about the way he is. Even if society can't see it, I certainly can. A world without people like him would be missing something important. Not something that can be measured by the usual measurements, like careers and families and inventions and artistic productions (though I'd love for him to achieve those things, if he wants them) but by something intangible.
I hope that someday, Carly, you will see what makes you different is not entirely made up of bad things, that there are good things in the bundle too, and that all of it makes you Carly, and you're a special, wonderful person just the way you are.
posted by Ettina at 4:20 PM
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