Why is it okay for the hammered dulcimer, but not for speech or walking?


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.

Tags: music disability michaelmasley dulcimer nonspeech training hierarchies


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

9 responses »

  1. I understand what you mean. I’ve noticed people tend to ascribe their values to other people. For example, when I tell people that I don’t care for or about my father, they get terribly upset. I don’t know why; my father is nothing like theirs, so my attitudes about him have no reason to correlate to theirs.

    Just like I would lament the loss of ability to climb a tree. It’s important to me. Maybe someday it won’t be. Apparently it isn’t to you. Simmilarily I am curiouse about the dulcimer, but I doubt I’ll ever try playing it. I don’t expect you to be terribly upset by this either.

    I feel people need to learn to accept that there’s different ways of being, and there is no overarching value set.

    I’m very good at being me, and my value set applies to who I am. I would be terrible at being you, my value set wouldn’t fit at all. I play classical guitar, not the hammered dulcimer! :)

  2. Actually, there was a time when I thought that if I couldn’t climb trees (or do all those other things I used to enjoy doing but can’t do), I wouldn’t be happy.

    Then I started falling out of them and breaking bones and stuff — I’d never even fallen before, let alone broken anything. And even though I kept climbing, it kept getting progressively harder to do all the movements involved, until eventually it was clear that it was too dangerous to continue.

    It’s not that I don’t miss climbing trees, actually. But I don’t … how do I describe this? It doesn’t really take over my life, I rarely think about it anymore, and it’s not overly traumatic. I also discovered there’s a lot of things I can do with trees without climbing them, many of which I can do when I’m incapacitated in nearly every other way.

    So… yeah, I don’t want to give the impression that not being able to climb them didn’t affect me at all, more that I put it in perspective, and found other things to do, or other ways to do things I’d done before.

    Which is actually what most people do when they become disabled, so it’s not all that surprising that I did the same thing. I just find it amazing that there’s this incredible encouragement, from mostly non-disabled people, to wallow about it. When the same people would generally recognize it as wallowing if it was a non-disabled person.

  3. Oh and regarding the classical guitar, I suppose I would be horrible if judged by those standards too. My hands, by virtue of a combination of size (work-around-able with a small guitar, which I’ve occasionally considered), shape/flexibility (not so work-around-able), and carpal tunnel, are not up to guitars at all. :-)

    I was thinking of mentioning that, because I always really have wanted to play guitar, but attempts to do so have resulted in large quantities of hand pain (not just from the carpal tunnel, but from the fact that my fingers just don’t bend that way). So I play things like hammered dulcimer instead.

  4. I had to give up the clarinet, due to my clarinet being stolen, and (more importantly) my lower front teeth rotting away. I’m pretty good with the recorder (soprano). I wonder if there’s any music written for hammered dulcimer and recorder.(both at once)
    I reckon not.

  5. One of my favourite Christian artists played the hammered dulcimer on most of his albums. It always amazed me, the sounds he could get out of that instrument. (It’s Rich Mullins, who died in a car accident many years ago.)

    I think, if something is important enough to you, you find a way to do it – or something like it. Joni Erickson Tada broke her neck in a diving accident at 17yoa, and is a quadriplegic. She is now an accomplished singer, author, and artist. She holds the brush (pencil, etc.) in her mouth and paints (or draws) that way.

    If you want something written for hammer dulcimer and recorder, I’m a composer by degree. ;)

  6. But if you’re quadriplegic and determined to walk, and are exerting a whole pile of effort, more than walking really is worth, because you don’t see how you could possibly be happy unable to walk, that’s not good. (I believe there is a famous example of that, Christopher Reeve.) And if you’re quadriplegic and have no real desire to walk, it’s not OK for people to say insulting things about you.

  7. That’s true, Ettina. It took a long time for Joni to get to the point where she was able to accept herself as a quadriplegic. She was depressed and suicidal, and she didn’t feel like a whole person. Eventually, her friends and family helped her to see what she could do, and she began to focus on that instead of what she couldn’t do. And out of that came an amazing career. She’s also married, and has been for a very long time. I’m sure many people didn’t think she would ever get married (herself included), but there you have it.

  8. I think a lot of people can’t see how much they connect physical ability/activity with connecting with people. So that if you cant do (fill in the blank) then you dont have friendships. I found this out years ago ( I was born with a congenital heart problem that meant I probably wouldnt live past my teens) when I read about people with disabilities. What struck me was how much sadness that famlies thought that their kids felt ” they want to be outside running with their friends” My opinion was ” who in their right minds would WANT to run?” Being with friends _yes . Running ??? Who needs it? I have never had the desire to run cross country or track or anything other such nonsense. I could never understand runners who said that “hit the wall and kept on going”. I was always puzzled by that since when I “hit the wall” my body completely stopped there was no keeping on going no matter how much my mind said go.
    I think thats why those who are “healthy” have such a problem with anyone who isnt. Their whole self concept is built on ” I can tell my body to do XYZ and it will” The idea that the body has control over what THEY do is simply too threatening for them. So maybe the real issue is control??

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