I am a mediocre hammered dulcimer player. I’m not horrible, but I’m not that great either. One time, I was in downtown Santa Cruz, and I saw Michael Masley playing. The hammered dulcimer is a stringed instrument that’s normally played by striking the strings with two hammers, one in each hand. Michael Masley plays it by strapping hammers to all of his fingers, including ones that can strike, bow, or pluck depending on how you use them. I stopped to gawk. Eventually, I told him, “I play. But not like that.” He stopped playing and let me look at his hammers.
I wish I could play like Michael Masley. I often imagine myself playing like Michael Masley. But I’m not Michael Masley, or anywhere in his league in terms of talent, and I know that even with practice I’m unlikely to be able to play well with ten hammers instead of two.
This doesn’t bother me too much. Nor does it make me different from all the people who wish they were like Michael Jordan and know they’re never going to do more than shoot hoops in the driveway or watch basketball on TV or imagine basketball games. Most people in the world have things they wish they could do and couldn’t, even with lots of training and practice, do. Most people in the world dream in this way, and most know that it’s a dream, and know how to incorporate bits of it into their lives and go on with their lives without being miserable because they don’t match their dream.
I’ve noticed something, though.
Most non-disabled people understand how I feel about Michael Masley. They don’t feel sorry for me, they don’t expect me to make myself miserable trying to be him, or anything like that. They understand that I enjoy playing, even if I can’t do it the way he does. And they would also understand if I had absolutely zero interest in his kind of expertise, or in the hammered dulcimer at all. I know very few people who even play it or want to play it. And some people even regard it, or at least some of the kinds of music I play on it, as sort of embarrassing. They regard my attitude towards Michael Masley’s talent, as well as other people’s total indifference to that kind of talent, or that kind of instrument even, as mature and responsible.
My biggest forms of recreation used to be long-distance walking, riding my bike, and climbing things, especially but not limited to trees. I had excellent endurance and the kind of ability to climb and balance on things that some autistic people are famous for. I enjoyed sitting up in trees. I enjoyed walking on fences. I enjoyed exploring and mapping things out as far as I could go.
These days, I can’t walk even as far as the average person can. I’ve lost many of the motor skills that gave me the not-even-think-about-it climbing ability that I used to have. In fact, a lot of the time I can’t move at all. And riding bikes is outright dangerous.
This is what people seem to feel sorry for me about. But I don’t regard it as any different than Michael Masley. Yeah, it’d be nice to do things that used to be my main source of entertainment, but I can’t, and I don’t feel too bad about not being able to.
I said that they call my attitude to Michael Masley, when they have any reason to call it anything at all, mature and responsible. And they don’t even have occasion to call it that, really, because it’s expected that most people will at some point reach that level of maturity and responsibility.
But what do they call my attitude towards long walks and bike rides and climbing stuff?
They call it giving up.
They call it irresponsible.
They call it wanting to be an invalid.
They call it throwing my life away.
They encourage me to make my life utterly miserable until I can do these things, rather than doing the things I can do, learning the things I can learn, and so forth. I’m supposed to, instead of living my life, sit around waiting and mourning something that I don’t really see a need to mourn in the first place. If I did that about not being Michael Masley, I’m sure someone would tell me I’m being ridiculous. But because I’m disabled, not doing that is regarded as ridiculous. It’s expected that I should yearn to be “normal” above all else, and perhaps yearn to die if I can’t be that. That this attitude would be truly immature and irresponsible seems lost on most non-disabled people I encounter, and even some disabled ones.
I may fantasize about things like climbing trees. But then there are some other things I don’t fantasize about at all.
I don’t have any particular desire to be able to speak with my mouth.
I don’t have any particular desire to walk. And this despite the fact that I can and do walk some of the time. And even the rest of the time, when I can’t walk, I don’t miss it.
The more I learn about what biased cognitive scientists regard as “higher-order” thought, the more I’m actually glad that research is showing that it’s “optional” for me at best. (Not that there’s anything wrong with the fact that some people are designed to use it constantly. But I don’t want to be them any more than they seem to want to be me.)
I would fight anyone who tried to make me non-autistic.
People call all this, downright sick. They imagine that what ranges from lack of particular desire to do something, to outright hope that I’ll never do it, must have some deep and unhealthy subconscious motivation. I somehow never really see people who are indifferent or averse to learning hammered dulcimer skills (that they may or may not be able to learn) being treated in this way. But I’ve gotten hate mail and even death threats for my views on these things.
I don’t believe, by the way, that things just are how they’re supposed to be. That if I can’t get my wheelchair into a shop, I should just accept it. That if I’m treated with disrespect, I should just accept it. That if I am (or anyone else is for that matter) viewed as non-communicative rather than just non-speaking, I should just accept it. That if there’s something about myself that I can and should change, I should just accept it. That if there’s something I want to do, and is within my reach, but will take a lot of struggle, but is important enough that I really have some considered desire to do it, that I should just give up on it. And I’m not saying that being autistic (or any of the other things I am) is merely a lifestyle choice.
But neither should I accept being told in so many ways that I should be living my entire life as an interminable, nasty, miserable, no-holds-barred fight against my own body and brain. I should not accept that people view that kind of struggle as heroic, because it’s not. It’s not only self-destructive, it’s also destructive towards other people who are expected to take on that level of self-destruction as an inspirational example.
Someone wrote to me recently, imagining that much of my life is stolen or wasted or something. And I thought about how differently I viewed my life than she did. I didn’t even know how to put it into words. I still don’t.
I’m just continually amazed that people think happiness depends on certain particular abilities, and that those of us without them not only have no merit in the way we function in our own way, but should strive miserably and endlessly to be this one kind of person that we’re not. Many of the people who believe this might think twice if they had to live in a world controlled by people who thought that playing the hammered dulcimer was the most important skill in the world, that everyone should make themselves utterly miserable striving for.