Today I am 40.
I’m alive. I made it. I beat the odds. Wow.
People like me–autistic people–live, on average, about 37.5 years. Some of it is epilepsy (which often comes with autism) and congenital defects and genetic glitches that we’re born with; but a lot of us who die early could have lived to be sixty, seventy, or eighty. It’s bad health care, abuse, outright homicide; it’s a higher suicide rate. Sometimes the cops kill us, or our parents do. Jordan Neely, who died on May 1st, was autistic, and age 30. I guess when you’re a scary black man with schizophrenia, you’re fair game for any homicidal Marine who thinks choking somebody to death is heroic.
You wanna know what would’ve taken actual courage? Talking to the scary black man. Asking him if he’s OK. If he’d like a sandwich or a drink or somebody to talk to. Taking the risk that maybe he’s pissed off enough at the world that he’ll punch you in the face, because you don’t think that being pissed off at the world on a subway car deserves the death sentence.
Being 40 means being a survivor. Here are the reasons I’ve survived: I’m white, I’m short and non-threatening, I’m smart, and I can make people see that I’m human.
None of those things are anything I can help. They’re simply the luck of the draw. I’m 40, and other people will never be 40, because of sheer luck and the arbitrary things that make the world more hostile for some people than others. Okay, so my ability to make people see I’m human–that is, to communicate well enough so that neurotypical people understand there are thoughts in my head–is a learned skill; but my ability to learn it in the first place was a genetic quirk. I could’ve turned out quite non-verbal, had I gotten slightly different brain wiring, or a brain that didn’t work quite so efficiently.
I’ve tempted fate, sometimes. Done things that are supposed to be “risky”. When George Floyd got murdered I made myself a sign and stood at an intersection in my town, and people cussed at me, and a guy ran his car up on the sidewalk trying to scare me. But the risk I took then was tiny compared to the risk your average black dude takes just existing. The world’s unfair like that. And anyway, the other people in town came out eventually. There were five hundred some of us in the end, which in my town is one in ten people. Sometimes folks just need a spark, that’s all.
I look back on forty years (minus some infantile amnesia) and I think, wow. I’ve come quite a ways. Twenty years ago, I thought I’d be a scientist. Now I’m disabled, and living below the poverty line, and somehow I’m still making a difference–more than I would have if I’d become a scientist and either tried to push the creation “science” I was raised with, or joined the cutthroat world of academia. I thought I’d have to do amazing things with that brain of mine. Turns out, what I needed was just to do useful things.
It wasn’t the life I thought I’d have. I didn’t realize just how disabling my autism would turn out to be, or how much extra trouble I’d get from depression and PTSD and ADHD. But I wonder whether I wouldn’t have been an absolutely insufferable ass if I hadn’t had weaknesses. Maybe it’s a good thing that it turned out I wasn’t going to be able to use my brain to become successful in the typical sense.
I dropped the homophobia and the Creation science and the legalistic independent-fundamentalist-Baptist upbringing; but I didn’t lose my faith. I follow Jesus, still. I don’t go to church anymore–I’m limited to churches who’ll take a queer, non-binary, asexual autistic with a buzz cut and a chip on their shoulder about people who don’t recognize the value of other people. Those that would welcome me–and there are quite a few, actually, because many Christians came to the same conclusions I did–are simply too far away for someone who doesn’t drive. And then there’s coronavirus, of course. Large gatherings aren’t exactly the best move, even with a vaccine. My grandmother–she died during the pandemic, and I still dream of her–once told me that I live like a nun, because I use as little as I can manage, and live as simply as I can, and spend as much time as I can making myself useful to others. So I suppose I’m a convent of one. Or a monastery. Is there even a non-binary word for that?
I still love reading and learning. I always have, but when I was younger I took it for granted. Now I know that just the ability to get my teeth into a subject and teach myself is an extraordinary skill. I taught myself how to write well; now I have a blog. I taught myself how to do basic web design and that turned out to be useful for those memorial web sites. I learned how to care for animals; so I used that to become a shelter volunteer. And of course I love libraries–so now, as a library volunteer, I help keep my local library running.
I’m not disappointed in myself. I think I did okay with those forty years. You know how, when you use a campground, you’re supposed to leave it nicer than you found it? That’s what I hope I’m doing with my life. Leaving things nicer than they would’ve been otherwise.
Somewhere along my life’s journey, I let go of traditional measures of success. I don’t care about money or reputation. I don’t have to have people tell me I’m wonderful. I just have to make myself useful, and if I can do that, then I’ll be satisfied with my life.