Hello D,
A couple of nights ago, I was talking to moms and dads like your very own mom and dad. They were asking me all about people like you and I: My hobbies, my favourite foods, my dislikes, my favourite thing about myself, and what I think is the best possible path for them to take to raise kids like you, kids who are like I was at your age. You were off in the corner with your legos, and I felt like joining you and answering their questions while building a totally awesome fortress. But I sat at the table and just talked, while clicking my tongue occasionally, sighing, and rocking gently back and forth in my chair. Occasionally I cracked a joke.
When I was talking with them, I saw them smiling, laughing, and there was something in them that I was able to faintly detect, though I'm not so good at this type of thing: A mixture of relief and gratitude.
I think I know why they're grateful, D, but I can't be sure. I think they were glad to see me. See me there, dressed nicely, hair combed, but still wearing my totally comfy old scruffy black addidas shoes, mismatched socks, and rocking back and forth like I do. I was clearly like their own kids, but I was happy, content, and at ease (somewhat) in the world of adult conversation and adult responsibility. I had goals, dreams, and a tangible type of happiness, the kind that playing with those legos used to give me.
I think, more than anything, that's what they want for you, and their own kids. That happiness. For a long time now, they've been told that that's beyond your grasp, that your autism means that there's no hope, no future for you beyond living at home in your own filth and their shattered dreams. That's the image the media and not-so savoury folk have fed them about our autism. But that night, I could practically feel it break away. There was something different taking root there, and it was this idea that not only was happiness possible for you and I, it was all possible without having to force us into a way of life we were never meant to adhere to.
It's important that people like those parents know I exist, that others like me exist. When I was your age, I didn't know there was anyone like me out there. When I was your age, what I "was", would often be dubbed a mystery, a puzzle, or unsolvable. I had people call me horrible names and tell me horrible things. I've never managed to shake it off, and it forms a weight on me that sometimes makes my words, thoughts, and deeds drag along the ground, like a ball and chain. I know that this still goes on, and it makes me shudder and wince with a pain you'll grow familiar with as you age.
But I want a better future for you. Both myself and my parents want it. If the world took off its pity-tinted glasses and saw you do what I see you do, they'd be amazed. I love your intricate lego designs, towering high. I marvel at how you, like me,love to blow on cold glass and trace along letters and numbers in them. I'm amazed at your prowess with your finger as you write out these sums and words. But most of all, I love seeing you stimming quietly or not-so-quietly in the corner of the room uninterrupted. No attempts to jerk you out of it, no worries about how weird you look.
I love it because it's the world you created for yourself, and now, nobody wants to intrude in and deflate it. Never lose that world, D, it's your safe haven.
I promise you, I am going to do everything in my power to make sure that safe haven is yours to keep. I was luckier than others yesterday and today, and I want the very best of luck for you and all your friends. There's a little bit of me in all of you, and you all have something you share with me. Treasure it. And I'll make sure that it is seen for the precious gift it is, until you're old enough to protect it yourself.
Hopefully by then, nobody will be fighting to rob you of it though.
Leah Jane
That made me so happy to read. It's amazing what kids with disabilities can do when parents don't work under the assumption that something's wrong with them.
ReplyDeleteBy the way, how do you feel about the word "disability"? I identify as "disabled," but I know that not everyone who has what society defines as "disability" likes that word. I hate the word "disease," though.
I already said this, but that's a beautiful letter you wrote. I hope D's future will be a happy one, and I'm glad his parents have accepted his autism.
ocdaydreamer: I am fine with the word disability. I believe that it's important we use it not only as a self descriptor, but continue to use it to talk about our movement. Not only because it's accurate, but also, it will help people who genuinely need assistance and funding to achieve an independent life get what they need, as opposed to a purely positive word like "diversability".
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