winterkoninkje: shadowcrane (clean) (Default)

Hi all, long time no post. A lot has been going on, but I’m finally starting to get on top of things again. I’ve been meaning to write in a bit more depth about some of this, but that want for perfection has been the enemy of the writing anything at all. So, here’s a quick synopsis of what’s been going on in my neck of the woods.

Both of L’s parents passed away. We’ve known this was coming, but it’s still hard of course. L was out there for a bit over a month taking care of her mom. They died very close together, so we ended up having a single combined service. I was out there for about a week helping to wrap things up before whisking L back home.

I finally got back the results of the genetics test. Turns out I don’t have Loeys–Dietz, or at least not the same genetic variant my mother did. But I definitely have something. So it’s back to the diagnostic swamp trying to figure out how to give it a name so that doctors’ll take it seriously. Current working hypothesis is hypermobility-type Ehlers–Danlos. Alas, “hypermobility-type” is medical jargon for “we have no idea what this is, but it kinda looks similar to the forms of Ehlers–Danlos we do know stuff about, so let’s call it that.” So, yeah, no medical tests to “prove” that’s what it is; just your usual game of convincing folks you have enough of the symptoms to match the syndrome.

I’ve been getting used to paying attention to my ADHD and working with it rather than trying to plow through it. It helps a lot to recognize that it’s not a failing on my part (e.g., that I can’t focus on boring things for as long as other people) but rather just part of how I’m wired. That makes it a lot easier to stop beating myself up over things, and instead figure out better ways to work with my brain rather than trying to force it into a shape it won’t take. As I’ve gotten better at this I’ve finally started getting caught up on a bunch of things that’ve fallen to the wayside over the past few years.

For example, I’m slowly getting caught up on the backlog of bug reports and feature requests for my various Haskell packages. Mostly been focusing on logfloat and unification-fd so far, but will make it around to the others in time. So, if you sent me an email about some bug or feature over the past few years and it seems to have fallen into the void, consider filing a ticket.

Still working on getting caught up to where I should be on my dissertation.

Work has also been going excellently. It’s all seekrit and nonsense, so I can’t say too much about it. But lately I’ve been doing a bunch of work on characterizing families of mathematical objects, and discovering their symmetries so we can exploit them to simplify and optimize things. So lots of mathy goodness going on. It’s a bit more geometric and combinatorial than my usual algebraic fare, but it’s the sort of stuff that arises from algebraic structures so it’s not too far from home base. (If that doesn’t make sense to you, maybe take a look at Brent Yorgey’s thesis to see an example of the connection between combinatorics and algebraic data types.) Plus, it helps that I’ve been getting to know some of the hella queer ladies who work in my building :)

In other health-y news, round about the time I got officially diagnosed with ADHD I had a bunch of friends going on about what the symptoms of allism (aka non-autism) are. Though I have a bunch of autistic friends, I’ve never really known much about what autism’s really like because all the literature is written by allistic folks, for allistic folks, so they’re all “patient has underdeveloped/insufficient blah” and I’m like “according to what baseline? How much blah does it take to count as having ‘sufficient’ blah? What are diagnostic details for measuring how much blah you really have?” So I finally got to hear some details from the autistic side of the fence, where people actually explain shit and elucidate the differences. And based on that: I’m hella not allistic. I can (and should! and have been meaning to!) write a whole separate post on this topic. I’m still not entirely sure I feel comfortable adopting “autistic” label (for reasons which are, themselves, further symptoms of autism), because my experiences don’t match up perfectly with some of the parts of what is traditionally called “autism”, but I’m absolutely non-allistic. I think the spectrum of non-allism is far larger and more diverse than allistic people currently believe, but —again— a post for another time.

winterkoninkje: shadowcrane (clean) (Default)

Life has been good overall. I’ve been wanting to write about various happenings of late (e.g., my trip to Nara for ICFP), but I’ve been terribly busy. Sure, sure, everyone’s busy. But no, my problem is that I have a terrible habit of overcommitting. For the longest time I’d always chalked it up to a personal failing; but lately I’m thinking that’s not quite right. Our society has a way of making us think whatever problems we face must be due to “personal failings”. One of the classic examples here is the Norman Door. But another classic example is the way we blame people with chronic conditions for the ableism they face.

So, what is a “Norman Door”? They’re called that because the problem was first (or most famously) highlighted by Don Norman. Have you ever had a door where you always pull when you’re supposed to push, or always push when you’re supposed to pull? Everyone has, and yet whenever we encounter them we always resort to blaming ourselves. Doors are such simple devices, surely any problems we have must be on us, right? But the problem isn’t us; the problem is the door. We discover how to operate the world around us by making use of affordances: flat/horizontal surfaces afford sitting and putting things on; handles afford grabbing and pulling; vertical surfaces afford pushing and leaning. So when public buildings don’t want people to sit on their ledges, they add bumps so they’re not smooth. When airplanes have surfaces they don’t want you to sit or put your feet on, they make them slanted so things don’t stay put. And a well-designed door is transparent about whether it should be pushed (plates or crashbars) or pulled (handles, especially vertical ones), and transparent about which side of the door needs operating (rather than, say, putting a doorknob in the center of the door). Those doors you can never get right are so difficult to deal with, not because you’re an idiot, but because they are poorly designed: the door’s affordances say to do one thing, when in fact you must do the opposite.

Poor design is ubiquitous, and I could go on all day about it. But the problem of Norman Doors isn’t just a problem of poor design, it’s a problem of social expectations. The problem isn’t just that these doors are annoying. It’s also that we blame ourselves for the failings of their designers. It’s also that this continuous low-grade annoyance exerts a continuous low-grade cost— in time, in flow, in emotional reserves. We get disrupted, frustrated, exhausted, and then we feel bad for not “measuring up” to society’s standards; and we reinforce that guilt by shaming others whenever they fall into the same traps. This is the same trick we play on minoritized people and people with chronic conditions. These people have to pay constant low-grade costs to overcome the iniquities of a society designed against them, but then we train them to blame themselves for encountering those injustices at all, let alone for not having the reserves to go on to lead “a productive life” after being exhausted by microaggressions.

Yes, I have problems overcommitting. But is it a personal failing? I’m not so sure. The problem is less one of not having enough time in an absolute sense, but rather a problem of not having enough spoons. I long ago got used to the constant low-grade costs of sexism, homophobia, transphobia, and saneism. But try as I might, I’ve not been able to get used to the costs of ableism. The sexism et al. was far worse in Bloomington than they are here in Mountain View. But from what I’ve seen so far, academia is far more amenable to folks with my sort of physical disabilities than industry is. It’s not even that Google is bad, per se; and I wouldn’t be surprised if it’s a lot better than most of industry. But even if the grass is browner on the other side, that doesn’t make it green here. The goog is great about providing ergonomic support, and that helps a ton. But the food/wellness program is grossly pro-orthorexic, which means they’re terrible for my dietary needs: I have issues with low-electrolytes, and the whole “salt is bad m’kay” propaganda causes health problems. (Hint: salt is crucial for the proper functioning of neurons. Also for silly things like maintaining blood volume, and hence adequate blood pressure.) I can, of course, bring salt from home or make sure to have extra at breakfast and dinner; but there’s an ongoing cost for keeping extra vigilant about it.

One of the bigger and harder-to-address forms of ableism in industry is the requirement to be ever present. Office life is exhausting. The triggering of sensory hypersensitivity, and accusations “antisociality” for wearing sensory-dep headphones. The expectation to sit still at your desk all day, and judgment for getting up to move around every pomodoro. Being interrogated if you use your cane irregularly, or being invisibilized if you use it regularly. To say nothing of the extreme ubiquitous fat-shaming of California. Many days, I’d be fine to get stuff done if I could work from home, but it takes all my spoons just to be “present”. And after a whole day or a whole week of being “present” I don’t have any energy left to pursue my passions and ambitions. Is it my fault for “over”committing to these passions? Of daring to have ambitions outside of surviving capitalism? Or is it a systemic problem that forces disabled people like myself to absorb the costs of society’s failure to design for the whole variety of human bodies?

winterkoninkje: shadowcrane (clean) (Default)

I’ve been trying to write a post. Been trying to write a hundred posts, but it’s all a tangle, whenever I try pulling one of the threads the whole ball knots up. Don’t know where to begin, because where can you start when the disease began before you entered the world, because what can you say when you’ve spent so long convincing yourself you have nothing to say? That tangle of where to start, seems like it’s the sort of thing that only ever goes away after you’ve already been talking. I never knew where to start with my psychic pain, back when I joined Bodies Under Siege, I only learned the words for everything I felt after talking so long with other survivors. But back then I had the luxury of anonymity. Had the freedom to explore the boundaries of myself in that anonymized community without worry for repercussions.

Having spent so long convincing myself I’ve nothing to say, it’s like I can’t speak my current mind without first unleashing that backlogged torrent. But I think, really, it’s all ableism. It’s this,… this,… we spend so much time denying the voices of the disabled, I feel like I’m not allowed to speak, feel like before I can claim that mantle I must first earn my street cred. Like, before I can write my post on living with chronic pain, first I must quantify for you what that pain is like lest you don’t believe I have it. Like, before I can write my post on invisibility, I can’t tell you how I’ve been trained to invisibilize myself without also first convincing you there’s something to be hidden beneath that cloak. Like, before I can write my post on internalized ableism, I have to have already told you my whole story —a story over a third of a century in the making, but also a story tangled up in so many other things that aren’t disability but which intersect with my disability. But I can’t tell you that story, not the way I see it, without telling it through the lens of the ableism of which I wished to speak.

But all this inability to speak before having spoken, I know it’s just ableism. Know it’s a tool of the able-bodied system, a tool they beat into us when we’re young, to make sure those who don’t fit the mould stay silent. It’s why I don’t comment or complain about a daily level of pain that’s high enough that OTC painkillers no longer help. It’s why when I do bring up out of the ordinary pain, I’m never believed; doctors are all, “it can’t be that bad if you’re only just mentioning it. Try some advil.” Just exactly like the police to a survivor of rape, “it can’t be all that bad if you’re only just mentioning it. Try not wearing slutty clothes.” And it’s not even the pain that worries me. It’s the feeling of inadequacy. Ableism is the belief that everyone already meets some standard specification of ability and productivity, that anyone who doesn’t measure up is just lazy, is cheating the system, isn’t shouldering their allocated duties, is a burden on the good responsible people, that those who truly “through no fault of their own” can’t reach those specifications are so rare that if you were one you’d already know and you’d never question so why don’t you just suck it up already. It’s the Protestant work ethic that says no matter how hard you work it’s never good enough. It’s why we feel like frauds, why we work so hard it breaks us, for fear of falling behind, for fear of losing everything because of a bad day. It’s that other impostor syndrome, the one that no matter how bad things get you can’t ever shake the worry that it’s all “in your head”, that you’re “making it up for sympathy”, that “it’s really not that bad”.

And all of this is why I can’t even begin to speak. For my experiences of ableism are all filtered through being a survivor of rape, being a survivor of a conservative Christian childhood, being a survivor of psychological torture and gaslighting, being a woman, being queer, and I can’t but draw the obvious and necessary parallels, but those parallels only elucidate if you too have survived these things.

winterkoninkje: shadowcrane (clean) (Default)

Many of us with disabilities have more than one. This multiplicity is invisiblized by the abled community. When our lives are already assumed to be defined by disability, admitting multiplicity risks the hazard of letting the complexities of disabled lives enter one's mind. But even among the disabled, there's a tendency to focus on the one or two things which most obviously impact our lives. This is a coping mechanism. To cope with lacking spoons, we are always prioritizing our energies, and there is never enough to solve all the things. But also, ableism being what it is, we must be careful never to "complain too much" lest we loose whatever ears we've gained; so we consign our suffering to silence, that we might grasp at crumbs of compassion for hope that when things worsen there may still be someone who'll listen.

I have my "one or two things": depression and cPTSD. And I've mentioned my migraines on occasion, though they're seldom of bloggable interest. But there's one I've never talked about, one I've still not come to terms with myself. That's the thing about chronic pain. Noone ever teaches us about all the things that shouldn't hurt, about all the pains most people don't have. And consequently we come to normalize them, to unsee the ways they make us choose —in small ways at first— to restrict our lives. Last week I met a fabulous girl and we got to talking about disability. And with one sentence she cut through me like a thunderbolt, cut through a silence I hadn't even realized I'd been spinning for years. Her words, so simple:

I have a connective tissue disease

I've suspected it for a couple decades, known it for nearly a decade, but it's never been something I've been allowed to talk about. When a teen complains about joint pain, it is dismissed as an insignificance. When a twentysomething does, everyone older jests and jeers; "just wait till you're my age," they say. Sit down. Shut up. Respect your elders. If you're resilient enough to keep at it, to endure the shame and go to a doctor... well, doctors have ways of silencing things they can't cure. When I first saw a doctor for my knees, he acted like it was nothing, like I was a stupid kid bitching about nothing— despite saying, with surprise in his voice, how my x-rays looked like someone 15–20 years older. When I pressed, when I refused to be cowed, he told me there was nothing modern science could do: I could use a splint, but that'd weaken the muscles and exacerbate the problem; I could try working out to strengthen the muscles —at least, for as long as I could stand the pain— but that'd only slow the inevitable by a couple years at best; it wasn't bad enough for surgery, besides that'd just cause even more damage. "You're young," he said in flat monotone, like words rehearsed without meaning. Like pointing out something broken or left behind, when you really don't care if they hear you. Your coffee. Your wallet. Your tail light. You're young.

The thing about genetic issues is that they pervade everything. It's never a singular problem, it's a cascade of them, a death by ten-thousand papercuts. In my childhood, my mother always had issues with her knees. It was almost a joke how often she went in for surgeries on them; the kind of joke people only mumble and noone laughs at but they tell it anyways because they don't know what else to do. During my early college years, her shoulders started going out. A few years back my sister died spontaneously, and within a few months a cousin joined her. Aortic ruptures. In the last year or so, my mother had an aortic dissection. She survived, but more from luck than anything. I happened to be in Maryland when she was in the hospital, and I visited. She'd also been having catastrophic spinal problems. My parents didn't even bother mentioning it until she went in for the first surgery. It didn't go well. Three followup surgeries later and who knows if any of it did any good. Sitting next to her as she lay in that bed, her hands all locked up in pain, held in mine, I could barely look on her. Because I know I'll live to be crippled and die twisted in pain. She's had enough in-patient PT to be released, and is back home now on out-patient PT. Noone talks about it. But at least noone jokes anymore.

I can't say if it was her heart or her back that somehow managed to convince some doctor to take a closer look. He'd thought she had Marfan syndrome and ordered a genetic screening. Tests came back negative. Followups found it's actually Loeys-Dietz, something that wasn't even discovered until ten years ago, and the docs only knew of it because she'd been admitted to the hospital where they discovered it. There's no point in testing the dead, but there's little doubt about what did my sister and cousin in. I've been checked for aortic problems, and show no symptoms as yet. I'll have to get checked again every couple years.

(One of the funniest things about transitioning is how it's been the healthiest decision I've ever made. If I'd've known all the minor health issues it'd cure, I would've fought harder to do it when I was 18. Among the things it helped was my back. While uncommon, HRT can cause corrections in one's hips and lower ribs. Thanks to the changes in my hips and my center of gravity, I no longer have chronic back pain. Growing up I could never attain correct posture: it caused pain and felt unnatural; whereas now it comes freely and without thinking.)

But the litany of little pains isn't what hurts the most. I used to draw. It used to be my life. The fire in my heart, as maths is the breath in my chest. I'd do it when I wasn't thinking. I'd do it to focus my thinking. I'd come home and spend hours at it. I'd ignore eating to finish a piece. I won awards. I thought I'd make a vocation of it. By halfway through undergrad I could barely finish a small sketch in the margins of my notes. Many of my friends are artists (e.g.), and while I love their work, a hateful demon grows in me every time I see their successes or hear them praised. These days I can barely hold a pencil. My script an ever more illegible shorthand as I try to eke out a few more pages before I resign to sitting behind a computer. (The most creative parts of doing math, for me, needs being written. It is only once I have the sketch of a thing can I put it to pixels.) Just bringing up my art, acknowledging it as something lost rather than as something I lost time for, crushes me.

That girl, that blessed fabulous girl. A few days after we'd met I asked her about her ring, a beautiful curious thing, like two rings locked together at an angle. Turns out it's a surgical splint for preventing hyperextension. She told me where to get one, and on the bus yesterday I decided to check out their website. Reading through the descriptions of the rings they offer —I don't even... How do you name that emotion when a pain you've had so long you've forgotten it exists is suddenly eased, that lift, that release, that letting go. Like when you find someone who shares your very same marginalization, that feeling where you can just talk, can let words free without censor knowing they have already been understood before they are spoken. That sudden finding oneself not alone. That slow creeping into existence of a future worth looking toward. I had to turn off my browser. Can't be crying on busses. Can't be weak in public.

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June 2017

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