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This past week I’ve been in Paris for POPL and... it has not been pleasant. Generally I love traveling, and I was looking forward to visiting mainland Europe for the first time, but

I hate Paris.

Like, everything about it. This city is entirely opposed to anything resembling accommodation for disabled folks. And not just the city, but the university venue as well.

As mentioned in my previous, standing in place for a long time fucks with my circulation. There was nowhere to sit in the room where they served coffee. The “lunch” was standing tables only with, again, not even benches around the edges of the room. The one working/meeting room they had (which actually had chairs) was only open on the workshop days and got locked down before the talks finished for the day. And the library, the only other place we found to sit, is entirely closed on weekends.

In addition, the venue for the workshops was on the second floor. Technically they had elevators, but (a) the closest one was out of order, and (b) all the others were unusable because they locked the hallway doors around the workshops, thereby prohibiting access to the venue area from these other elevators. While I myself don’t have issues with stairs (yet), one of my friends here does.

Exacerbating this absurd refusal to accommodate anyone who may need to sit or take a lift, everything is noisy. I have sensory overload issues, and while it’s usually not too onerous to deal with, evidently the Parisians refuse to do any sort of soundproofing or baffling. None of the ceilings use acoustic tile, floors typically aren’t carpeted, walls are thin, and every surface is sound-reflectingly hard. Plus many of the rooms have harsh and noisy lights (yes, I can hear lights). The constant assault is exhausting. I have to wear my noise-cancelling headphones to bed in order to be able to get any sleep. The only quiet places we found were the library (closed on weekends), the working/meeting room (locked most of the time), and one coffeeshop (thankfully decorated with wood).

All the rampant ableism aside, it’s impossible to eat here. Vegetarian-wise it’s about like the early 1990s in the US: often you can get a salad, and if you’re lucky they might have one meat-free entree. Gods have mercy on you if you’re also sensitive to wheat. I’m used to conference lunches being hit-or-miss, but this year was especially bad. Of the days I even tried going, they only had vegetarian food once. And according to folks who went on other days, they mostly only had hors d'oeuvres rather than an actual meal.

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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?

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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.

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June 2017

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