I’m rather partial to my mind. I’d hate to lose it. I’m not talking crazy; I could do crazy. I’m talking dementia. I would hate to lose my mind to dementia. Second to that, I’d hate to be blind. Perhaps being blind would be worse, because I’d know I was blind—I might not know I’d lost my mind if it happens quick enough.
I can imagine how bad it would be to be blind. I would cope, I guess, but it would be a lesser life. It would be an exaggeration to say words are my life, but I’m not sure how much of an exaggeration. Certainly, words are a very big portion of my life—written words. If I had to consume my words by ear, well, that just wouldn’t be good enough.
Now, I’ve probably pissed a lot of people off with those admissions, but I’m not done yet. Take a deep breath. It gets better.
From my perspective, as a person with full and free use of my sight (excluding the whole glasses thing)—as someone who has built a life revolving around the use of my sight to do my work and to enjoy my leisure activities—it would be awful to be blind.
But just because I think it would be awful to be blind doesn’t mean it is awful for someone who is blind to be blind.
I am the mother of three children with autism. My children’s disabilities range from relatively mild—though, not as mild as it seems to me—to relatively severe. People pity me. From their perspective, I’ve got it hard. Ours is a hard, hard life—tragically hard, really. I know, because people have told me so a thousand different times in a thousand different ways. Probably more than that, actually, since I never really counted the times or the ways; besides, I’m not good with math. Anyway, I’ve been told that my life is awfully hard a lot. We’ll stick with that. So, yeah, where was I…oh, yeah, our life is hard. Hard. HARD. HARD.
Except it’s not. Not really. At least, well, sometimes it is, but so is everyone else’s, so there.
My brother just had another accident. He slipped. For me, slipping—unless it involves falling down the stairs and breaking my wrist—is no big deal. I just get up. You see, I don’t have a chronically damaged knee. My brother does. So, his slip is a big deal. He slips and he sprains his knee so bad that it keeps him home from work, except he can’t stay home from work long enough to heal. He needs knee surgery, but he’s too young for knee surgery. So, he has to live with it. Chronic pain. Chronic risk of further injury. Now, that’s hard!
My cousin has problems with her gall bladder. So do I. Mine’s been spitting out stones since I was pregnant with Ben (he’s nine, btw). But she also has chronic back pain, which is worse. Seriously bad back problems. And two kids, one with special needs. Now, that’s hard!
And it is. My brother’s life is hard. My cousin’s life is hard. My life is hard. But not in the ways we’re prone to assuming when we look at each other’s lives. We look at other people’s pain and other people’s hardships and we say things like…I could never do that.
I could never stand being blind.
But, if it happened, I would and I would keep working to raise my family and I would keep working to share my words and I’d find a way to “read” the words of others. It would be hard. But it’s all a matter of perspective. We can’t fairly judge the quality of someone else’s life by how hard we imagine it to be. That doesn’t really work.
People assume that the way to make my life less hard would be to cure autism. People have told me this is true many, many times—though, not thousands, because I’ve learned the warning signs and I’ve learned to walk away whenever possible when those words are coming. The point is, this assumption is all wrong. If you ask me how to make my life less hard, then you’ll learn the answer has nothing to do with autism. In fact, it’s very similar to the answer you’d get from a lot of Americans right now.
What would make my life less hard? My life and the life of the family I support would be less hard if I had the financial resources to support my family better. It’s really that simple and that common.
I don’t assume that my fears of blindness properly reflect the experiences of someone who is actually blind. In fact, because I’ve listened to people who are blind I know that they don’t. So, instead of assuming that your fears of autism properly reflect my experiences as the parent of three children with autism, try listening. You don’t get to dictate the quality of our lives on your own terms.