kinda side jaunt, deflatormouse i loved your post and i may or may not get back to it. in the meantime i wrote (but didn't post) a thing yesterday about disgust, and then today i wrote this which i figure i will post:
I've found myself talking semi-seriously about what I've started calling "kyphophobia" and today I'm thinking, hey, it's probably worth explaining seriously why I talk about it and what it means to me.
For some number of years now, sometimes I'll be in situations where someone will say "lean back" or "stand up straight" or some such thing, and I will, and they'll say "no, that's not right". That was frustrating, but also kind of routine. My body not behaving the way I wanted it to has been kind of a lifelong experience.
I was born with a developmental disorder that's now known as "dyspraxia". It wasn't medicalized at that time. It was, however, clear that I was unusually poorly coordinated compared to my peers, and as a result I was treated pretty much the same way anyone with any kind of developmental disorder is treated. Oh, you're not good at this thing that everybody else is good at, what's wrong with you? It was something I could get by without it being acknowledged or treated in any way, which I think in some ways is an advantage. Now that I'm middle-aged, though, I find that there are a lot of, like, really effective ways to treat this stuff, and I'm thinking, gee, it would be great if I'd had this 40 years ago instead of being yelled at constantly because my body didn't behave in the ways other people expected.
And this is interesting because this experience is to some extent _correlated_ with my transness, because one of the interesting things about my body is that I have this thing called "hypermobility". Like, there's a normal range of motion joints have, and my range of motion goes a fair bit beyond that. It's a spectrum. I'm not, like, a contortionist like you'd see at sideshows, though I have met some trans people who genuinely are that flexible. It's still enough to qualify as hypermobile. And it turns out this _hypermobility_ is something that is statistically correlated with transness, along with a few other things, like for instance neurodiversity. I got no idea why. As far as I know, nobody has any idea way. Anybody tries to make the slightest _bit_ of causative inference here and I will psychokinetically glare daggers at your brain until you stop. (No, wait, I'm being completely serious here. I don't have psychokinetic powers. Or the ability to double-jump.)
A lot of hypermobility is associated with something called Ehlers-Danlos Syndromes. There are like 13 of these. I haven't been diagnosed with any of them, but it turns out it mostly doesn't get diagnosed. Most people aren't aware of it, aren't aware of the symptoms. As it turns out this is something that's pretty easy to test for! You can genetically test for EDS, which isn't true for a lot of other ways in which people are different. Honestly I'm pretty averse to getting tested for anything just because of the way people use genetics as a form of gatekeeping. If I say "a lot of trans people have EDS", somehow that turns into "if you don't have EDS you're not really trans". I am strongly and actively opposed to that sort of transmedicalist approach, so I haven't had my karyotype done or any of this other sort of genetic testing, because as far as my being trans goes, the results don't matter.
For EDS I guess it does, though, so I'll probably wind up getting tested at some point. For the moment, though, all I can say is that I do have joint hypermobility. See, I didn't think that having joint hypermobility would be correlated with dyspraxia at first. It confused me. I was like, wait, if someone's joints can move that much, that seems more like a superpower than something that would make you uncoordinated. The thing is that humans have the normal range of motion we do for a reason. Because my body moves in so many ways that most people can't, the idea of "OK, here, this is the most kinetically effective way to move", that's pretty difficult for me to get to, even now.
The other thing about my hypermobility is that I wasn't aware at all that I was hypermobile until after I transitioned. Some of the biggest symptoms of gender dysphoria for me were dissociation and depersonalization. I didn't so much feel like I was born into the "wrong body" as much as I resented having a body at all. I hated how it looked, sounded, and felt, I didn't see any possible way to change that condition, and as a result, I mostly tried to ignore it as much as possible. So much of the joy of my existence is what I call embodiment - the feeling of having a body and existing in that body for the first time.
And part of that is realizing the ways in which my body is different from "normal" bodies beyond, like, the trans stuff. When I started spending more time around other people (another knock-on effect of my transition), people started seeing me do my normal wrist stretches for my carpal tunnel and asked me "Wait, how do you do that?" I genuinely had thought that everybody could bend their wrist that far. I didn't think of myself as hypermobile because I wasn't a contortionist or anything. I also realized that my back wasn't curved the way backs usually are, so I went in to get spine X-rays. My physical therapist went and looked at them.
"OK, so these are the ones of you bent over - where are the ones of you standing up straight?"
"Those _are_ the ones of me standing up straight."
"Ohhhhh. Uh. So did this just happen, or...?"
Apparently it's unusual for someone to have kyphoscoliosis as severely as I do and just not _talk_ to anybody about it for decades. Honestly, I have no idea whatsoever how to benchmark pain, what's really severe and I need to get looked at, and what's something I can just deal with and don't need to talk to anybody about. I don't know how much it's _normal_ for people to hurt. See the thing is that physical and emotional pain have a _lot_ more in common than people often like to acknowledge. Not only did gender dysphoria hurt to such an extent that it was very difficult for me to accurately understand or diagnose other sources of pain _before_ transition, but I am still dealing with some pretty significant long-term effects from spending several decades working really hard to ignore the effects of an extremely painful, potentially lethal health condition, one that I really fucking needed to get treated. When it got so bad I couldn't ignore it, I tended to deal with it by doing things like curling into a ball for hours on end or screaming "IT HURTS" repeatedly, and being unable to elaborate any further. I got a reputation for being a bit of a hypochondriac.
My physical therapist is actually really great. I was able to tell her why I spent several decades not caring about my body, and she understood really well. She gave me some physical therapy exercises I can do in case I have days where I'm too depressed to get out of bed. It's worked out really well - sometimes doing the exercises gives me the kind of strength I need to actually get out of bed.
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All of that is pretty much just background, though. What really has me thinking about this whole thing is what happens when I tell people I'm a hunchback, which is that people will tell me I'm not. It's funny, because the thing I was most scared about when I was coming out as trans was that someone would respond with "no you're not". When people tell me that I'm not a hunchback, though... well, it's just given me a lot of perspective. When I was coming out, what worried me most is that if somebody else said I wasn't trans, _they might be right_. When someone's in a position of authority, it's just so easy to kind of assume that what they're saying is right. With my kyphosis, though, I find people who are situationally in positions of authority arguing with me about my own body. Not maliciously, is the thing. Like one of the people telling me I'm not kyphotic is trans herself. That's kind of what's interesting to me.
I say "I'm a hunchback" and not "I'm kyphotic" because nobody fuckin' knows what "kyphotic" means. I've thought about, you know, is hunchback a slur, am I using a reclaimed slur, but ultimately I gotta tell people things in language they'll understand. Except they don't, because the only thing they know from "hunchback" is Quasimodo.
I don't really know a lot about _The Hunchback of Notre Dame_. I haven't read any Victor Hugo. I didn't see the Disney version (came out after my time). I think I saw some of the Lon Chaney version. I really like him as an actor, even if his girl voice in the sound version of _The Unholy Three_ wasn't exactly all that and a plate of chips. (Heat from fire, fire from heat, Lon.) Overall my impression is that it's a good story, a good movie, and my GOD is it kyphophobic.
Like kyphosis really isn't a super rare condition. Lots of people have it. It's a form of scoliosis, which again, is pretty common. The only conception anybody has in their mind of it, though, is this grotesquely deformed creature, which, like, OK, he's not evil, he has a heart of gold or whatever, that's nice. The Disney character design makes him look pretty loveable even. He's still deformed. I was actually writing about this the other day, the disgust response. Humans often feel disgust when we see something that we consider "extremely ugly". So the only idea in someone's heads of a hunchback is someone who's extremely ugly and disgusting, even if the moral lesson is that, hmmm, when I see someone who I consider to be so ugly that I'm disgusted by them, I shouldn't act on that emotion.
So when people tell me I'm not a hunchback, not kyphotic, what I hear them saying is more that "You're not extremely ugly, I don't feel disgusted by you". Which is good! I'm glad they don't consider me extremely ugly and feel disgust when they look at me. I'm still a hunchback, though!
It helps me to frame things in this way because the stakes for "kyphophobia" are so incredibly low. Nobody's going to try to "clock" me as a hunchback. It's annoying that people try to claim I'm not kyphotic when I am, but people who recognize me as kyphotic don't think of me as disgusting or grotesque because of it. I don't suffer prejudice because of my kyphosis. It's actually not a big deal at all.
And this is frustrating to me because in my mind, that's how people _should_ deal with my being trans. I just can't imagine saying that I shouldn't be allowed in the bathroom because my being kyphotic makes me a predator or some such ridiculous nonsense, but thanks largely to transphobic media narratives, people seem to actually believe that my being trans rises to that level of significance. It's just so bizarre to me that people are looking at me for "signs" of something that's far less observable than my FUCKING HUNCHBACK and meanwhile not only don't _notice_ that I'm a hunchback, they don't BELIEVE me when I tell them that I am! You ask me about my bones and I'll say things like "kyphosis, scoliosis, thoracic compression fractures", but transphobes, all they say is "BONES OF A MAN". Like, it's not even about them being _wrong_. It's not meaningful, accurate, or useful anatomical knowledge. There are a lot of interesting things about my skeletal system. If all someone's interested in doing with it is arbitrarily assigning a gender, they're missing a _lot of clinically interesting shit_. I guess that's what frustrates me the most about the pseudomedicalism of transphobes. If someone doesn't _like_ my body, fine, but if somebody's going to spend that much fucking time thinking about my body, it's absolutely appalling to me that they wouldn't at least find my body _interesting_.
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So I guess... that's what my kyphosis, my hunchback, my experience with "kyphophobia" means to me. My body is interesting in a lot of different ways _other_ than being trans. Some of the ways in which it's _more_ interesting as well as more _obviously_ interesting are seen as _less important_ than stuff that just really doesn't matter at all to most of the people who make a big deal about it. The "kyphophobia" I experience is directly a result of negative, inaccurate portrayals of "hunchbacks" in the media which lead people to think of "hunchbacks" as grotesquely ugly and disgusting. The only way I can even _describe_ my kyphotic condition to them is by using a word which I'm just gonna go right ahead and call a "slur".
Despite this, my being a hunchback has _not_ caused me to suffer any significant prejudice. Even when people have misunderstandings about my being a hunchback, they don't go into a whole moral panic about it or react at all in a way that's grossly incongruent with my actual condition. People don't assign any moral value to my kyphosis. All of these things are particularly remarkable to me because of how starkly they contrast with the way people react to my transness. Talking about "kyphophobia" is in large part, for me, a way to communicate how grossly inappropriate and malicious the prejudice associated with transphobia really is. My being a hunchback isn't in and of itself important or noteworthy, and it _shouldn't be_.
― Kate (rushomancy), Thursday, 15 February 2024 04:20 (three months ago) link
I just realized Tuesday was the 20th anniversary of the live premiere of Brian Wilson's "Smile". This is, was, an important album to me. I've seen multiple trans readings of it. Not sure why. For me it's the idea of it. This fragmented, incomplete thing which has sort of been _reconstructed_ many years later. Except "reconstructed" isn't quite accurate. In 2004, it was constructed for the first time, in ways and using methods that wouldn't have been possible in 67. At the same time, a lot of the people who were part of those '67 sessions had passed away, were gone. There's a sense of loss overshadowing it. A sense of "what could have been", of "if only". It's hard not to feel that way about myself. It's hard not to feel a sense of injustice. My constant struggle is to acknowledge the grief I carry with me, grief I will always carry with me, without allowing it to harden into _grievance_. Grievance leads to entitlement, and entitlement leads to the dark side. Or something.
In any case, I've never gotten on really well with people who held on to some prelapsarian idea of the "real" Smile. The theoretical me who didn't get to transition when I was 20 isn't the "real" me. My incomplete transness manifested in fragmentary ways. I wasn't able to genuinely smile. At best I was able to work up an unconvincing imitation. The metaphor isn't perfect. I genuinely love Smiley Smile for what it is. My past self is someone I... have compassion for. See value in. I don't love what they did. It was hard and painful.
If people want to construct their own versions of Smile, cobble it together using what they have, out of the bits and pieces they have access to... I love that. I love _derivative work_. I kind of think of all work as being derivative work, in a way. Smile is one of the bits and pieces a number of us, I guess, have cobbled ourselves together from. The idea of... the Creature raging against its creator... it's not enough for me. More and more these days I think of myself as my own creator. The world gave me these fucked up parts but I'm the one who crudely stitched them together into a whole. In a metaphorical sense. In terms of corporeal surgery I had some fucking _amazing_ work by some fucking _amazing_ surgeons. I'm really fortunate and privileged to be able to have that done.
That corporeal surgery is important and valuable but it's not the essence of my _creation_. For me it's more a sense of stitching together consciousness and body, things which were split, at cross purposes. That's why I think of myself as my own creator. It was work I did.
I think of something I heard someone say about 2004 "Smile" once - something to the effect of "It's only about 10% Brian Wilson, but 10% of Brian is all that's left". Well. I guess in some sense I am diminished. Still. 10% of something beats 100% of nothing at all.
― Kate (rushomancy), Thursday, 22 February 2024 11:15 (three months ago) link