My Existence is Unthinkable

2012/11/02

It’s a day late for Autistics Speaking Day, but I just had an experience that reminded me just how unthinkable it is that I exist.

So. Today I was on Facebook, reading status updates, when I got an ad for a bracelet to “fight autism”. This is offensive. This is vile. This is an ad being served to me telling me that something fundamental to who I am is a thing that must be fought, because they presume that, because I talk about it:

  1. I must be an allistic parent of an Autistic child, rather than an Autistic person myself.
  2. That the only thing to do is “fight autism”. That nobody on facebook who talks about autisticness would have any other view than that “fighting autism” is a good thing and a priority.

This isn’t the first ad to remind me that anyone who uses the keywords I do (“autistic”, which I use way more than “autism”. I should talk about the theory behind this sometime, because I have one. It’s actually, in its own way, “person first”). I get ads that presume I’m a parent rather than Autistic all the time. When I care to, I block them and mark them “offensive” or “against my views”.

I have never once seen an ad on Facebook presuming that the reader was Autistic.

Ever.

Not once.

Instead I get assumed to be someone I’m not. Only. I get the assumption that my political beliefs on autisticness are the opposite of what they actually are. Only. The idea that I might be an Autistic person who does not want to be cured is entirely unthinkable.

How unthinkable it is that I exist as a trans woman is a story for another day. But I have experience in that vein, too.

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Facade-Keeping

2012/05/01

This post is for Blogging Against Disablism Day 2012

Facade-keeping.

That has been my highest priority for so long, and it was only when it was about to break that I even realized it was.

For the benefit of anyone who’s new, I’ll situate myself before I begin. I’m autistic, and I am a trans woman, which are both things I have kept facades about. I’m also white and USian (citizen living in the country), which are important and relevant privileges to my experience keeping facades.

In a recent post, I talked about how I had burned out twice in as many years, the first time minorly and the more recent time very heavily. I also touched on the role of facade-keeping, and how both made the burnouts look a lot more sudden than they are. So, I’m going to talk more about the role facade-keeping has played in my life and the influence it has had, but before I can do that I’m going to have to define what I mean by it.

What I mean by “facade-keeping” goes a bit beyond what I’ve seen other autistics refer to as “passing” (for allistic), and beyond merely remaining closeted and pretending (before I came out) to be a cis man. It’s also where I pretended to have many fewer difficulties than I actually had in other things, lest I look “weird” for being challenged. It’s where I, even when I couldn’t be productive (which was often, toward the end) always tried to look like I was being productive.

This meant sitting at work, hiding my computer screen as I did something that didn’t cost my energy, ready to tab over to some work-related reading (scientific journal articles, usually) that I didn’t have the energy to read straight through. Or sometimes at all. It meant sitting late at work, guilting myself over not having been productive. It meant hiding my stims. Or not stimming, which actually made things a lot more obvious (hellooooo sleeping in class).

To a lesser extent, it meant hiding my femaleness. Even when I wanted to be able to relax it meant making every effort to not give off the slightest clue that I was a trans woman to people I had not explicitly come out to, or that my femininity strayed beyond “acceptable” bounds. Now that I am “out” and no longer make deliberate efforts to hide that I am a woman, there is a little bit of carryover of this into hiding my transness. Most of hiding that, though, is physical. Hiding my gender was easy, compared to hiding my being autistic, though; I chose what to show and what to hide, and what to hide mostly meant overt signs that I, say, had a name other than the one I was using when someone might look. Hiding my autisticness was way more all-consuming than that.

I can’t say, looking back on my life, when I decided to start keeping these facades. They clearly did not start from my diagnosis, when I was 12. They were already there, even then. They might not have been as strong, but there they were. Was it when I was younger (seven, eight, nine, maybe?) and first heard the words “asperger syndrome” (a label I loathe) applied to me? I think it was even younger. It didn’t have a single start, but was instead the biproduct of years of social shaming to make me shut up. Which, I can call myself lucky for, because at least I didn’t face worse violence.

Going forward through my life, this facade-keeping brought me benefits as well as disadvantages. It shielded me from the worst of other’s ableism, and, most importantly, from my own internalized ableism. I was quite horrible to my fellow autistics in that time, keeping my facade even to myself. Equally, seeing who the “mainstreamed” special ed kids were and looked like (like me), and who wasn’t, and who got respect among my fellow special education students, reinforced my drive to keep my facade. At this point in my life it was driven entirely by internalized ableism.

Facade-keeping got me into and through a bachelor’s degree unaccommodated, even as I developed a political consciousness as a disabled person halfway through. I can’t say if I would do that again were I doing it over, but I can’t say either that any of the accommodations that would have helped me could be given be written out in a formal accommodations document and people be expected to adhere to it. I graduated with maybe two classmates knowing me as an autistic. And fewer than that number in real friends from class.

It was about a semester and a half before I graduated that I hit the first of my burnouts. And here’s where the first negative side of facade-keeping comes in. Burnous surprised me. I was completely surprised by my inability to motivate myself to do the work in front of me. My facade of the diligent, or at least competent, student had hidden what had happened even from me. This scared me. I hid it from everyone else, too, except the people I needed to talk to to leave the program. I cut class rather than attend and not turn in homework that was due. But the burnout itself was “mild” enough that I only needed to drop one of my programs to soldier on. So I did.

Soon after, I found my actual gender. I had hidden from myself so well that even that was locked away. And, like I mentioned, I knew that I had to transition before I burned out on that, too. This was a facade that killed people to keep.

But I had class to press on through, and I kept that up. And then I graduated. And then I pressed on to graduate school. And that’s where things fell apart. Although I wasn’t aware of it at the time, my priorities had become skewed. They were, first, to maintain my facades, especially about my being disabled (because that was all I knew); second, to accomplish the productive work I was supposed to do as a graduate student, both in class and toward a dissertation. Third, to care for myself. This was a recipe for breakdown.

And it happened. A bunch of things came together all at once. Classes finally passed what I could handle with my barely-developed study skills (until then, I relied mostly on my memory). Work responsibility dramatically increased, and I was expected to be more self-directed in it, which taxed my executive function heavily. My work became based around finicky chemistry that I only half-understood, and I was still expected to get results. All of these together combined into a level of stress where, to keep my facade of competence, I pledged things I couldn’t promise and then did my utmost to do them anyway.

And then, when I finally thought I could relax from one burst of that, I hit my limit. I no longer had the executive function to be a self-motivated worker. So I slumped. And I kept up my facade, and kept trying to make myself make any small amount of progress on my work each day even though each time I did I burned myself out further, and I was stealing the energy I needed to maintain my daily life. And still it was not enough.

In bad times, I could usually keep my classwork up, because I at least had to keep up my facade of that to teachers and classmates. For small things I could cut class if I absolutely needed to. But a thing came that I couldn’t cut, and I didn’t have the energy to do well, or even to develop enough of an understanding of my topic to do well in. And I had to present it. So I did. And then I ran off and cried as soon as I could find a place without people. It was then that I realized what had happened. My facade was the most important thing, from my years of being taught that it was. It had cracked, but only because I had burned myself out so thoroughly that there was nothing left but it.

Were it not for other circumstances, that burnout could have killed me, or put me in the hospital. The level of that burnout could only have been reached by my pretending I wasn’t burned out, by my pretending I had energy, by my pretending I wasn’t disabled. Had I not been keeping my facades, there is no way I would not have headed it off earlier. And now, I’ve come to believe that no benefit the facades give is worth keeping them around a minute longer than is necessary.


Belated BADD Post

2011/05/03

Blogging Against Disablism Day, May 1st 2011

I’m going to, unfortunately, keep this short, because I’m, like, way late for this.

So, a month and change ago, I announced that I was going to promote awareness of ableism, especially against autistic people, and not put up with (online) shit for all of April and see how that would go. This blog didn’t see much action, there actually wasn’t much to take down. Surprisingly, the section of the mainstream feminist sites that I go to either didn’t have anything I saw about autistic people, or managed to center autistic people for them. There was a moment on Shakesville that was kinda iffy in comments, but this year’s post was by an actual autistic person, rather than being by and about psychoconvergent family members of autistic people.

I didn’t quite live up to my pledge to call out everything in a timeley manner. There was some pretty disgusting shit in a Cracked article where they took really unnecessary jabs at autistic people that were completely tangential to the wider point they were making about the whitewashing of the Akira remake. This isn’t the first time they’ve done something like that either (no I will not provide links. The specific article in question is fairly easy to find in other people’s archives).

Like any other month-long campaign, it kinda fizzled out midway through. A month is a really long time to remain focused on one side-project. This is true about the other “awareness” thing that this whole Ablism Awareness Month was in response to as much as it is about mine. Which was good, since it meant that ablist badness floated across my Tumblr dash way less after the first couple weeks. Of course, I’m not tracking any tags, and all the people I follow are cool. From what I saw rebloggged and rebutted handily by people who were, the bigotry continued to flow.

In all, though, I think the project was a success. Something needs to be done to address the other “awareness” thing (the horrendously ableist one, not sexual assault awareness month. That one’s a way better use of the month). I think it’s quite likely I’ll do it again next year.


Ablism Awareness Month

2011/03/20

*blows the dust off the blog* Hello everyone, sorry for taking so long in between posts.

So, April is officially labelled as “autism awareness month”.

Gag.

Since I’ve been reading a lot of the blogs I read for more than a year, long enough to have gone through an april with them, I know exactly what to expect as an autistic person reading them, even ostensibly social justice-oriented blogs. They’re going to ignore autistic voices in favor of caretakers. The Quixotic Autistic lays out more ways we’ll see this happen in a nicely poetically-titled post, but for those of us who have experienced it, we just know what will happen and can only brace ourselves.

This will happen everywhere. This will not be confined to the mainstream media. This won’t just spread out to sites I wouldn’t read anyway. Social justice oriented sites will participate in this fail too. I know this because I’ve seen it happen as recently as last year.

So, instead, I’m proclaiming: On this blog and on my Tumblr, April will be Ablism Awareness Month. If I see something ablist, especially anti-autistic, on any of the sites I usually visit, I’ll say something even if only there. Since the first of May has been Blogging Against Disablism Day every year up ’til now, I’ll summarize my experience of the whole month then. It’s exciting to have a blog so I can participate in this.

Anyone who wants to join me is welcome. I’d love to not be doing this alone. I don’t plan to go looking for ablism in places I don’t regularly read, and I don’t expect to catch every microaggression in the places I do go. But if I have to do this alone, then I will. We’ll see how this month in the life of an agry autie goes.


I Don’t Want to Talk

2011/02/19

This isn’t addressed to anyone who knows this blog exists and who I am. This was inspired by one specific meatspace incident at the beginning of this past week, but it struck enough of a chord that there had to be other cases of this same thing that I’m not remembering off the top of my head because they’re that banal.

There’s no socially acceptable way to say you don’t want to talk, much less to say that you don’t want to talk to one specific person or to some people, but might want to talk to others. There’s no acceptable way to say “too tired to engage in small talk with people I don’t know”, or “I don’t have the mental energy to talk right now”. In the specific incident I’m thinking of (a classmate I didn’t know very well trying to make small talk with me as I rushed to get a homework assignment done), I’m glad that nobody tried to IM me in that time, either (I had to have my computer open to do homework). Fortunately with IMs, I could pretend to be busy or not see it, and all the people I like are people I’d trust not to be put off by “can’t talk right now”.

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xkcd

2011/02/05

So, today’s xkcd (comic transcript below the fold. Warning: ablism).

First thought: Huh, that’s really linguistically interesting.

Second thought: Y’know, that’s actually some really shitty ablism.

Linguistically, that most “random” things are trochees is an interesting thing that I hadn’t noticed before. Every part of The Llama Song that I broke down has a trochaic meter or only breaks it for a syllable or two, and I didn’t even think to check for that until I saw this in xkcd. So, that’s an interesting quirk of language.

Now, let’s move on to the ablism in how the author presents this interesting quirk. It starts in the first panel, where they (the character in the comic and the author she seems to be acting as a mouthpiece for) terms the use of this meme family as “brain damage”. That is, he labels a behavior he finds annoying as brain damage to de-legitimize it by association with disabled people, which by extension others disabled people by labelling them as “annoying” to the presumed-TAB audience.

It then proceeds to get worse. The comic characters decide that the best way to deal with an “annoying” disabled person (under the premise of the comic that the use of these memes is a disability) is to modify her mind as an experiment using a magic vocabulary-altering machine. I can’t express how not OK that is. I even skipped over the part where one of the characters advocates surgically removing her ability to speak as a way of “fixing” her “problem”. There is no indication in the comic that the person they’re doing this to consents, or even is capable of consenting. Let me repeat that, they deal with a person they find annoying who has done no actual harm to anyone through nonconsensual mind control, which the comic doesn’t comment on the ethics of, and conveys a general tone of approval.

Clinching their (incredibly ablist) point, when their nonconsensual vocabulary alteration doesn’t make the person behave normatively, when the active characters are still annoyed by their victim even after nonconsensually altering her mind, they switch to an ominous alternate plan that involves a brick.

So, here we have a character being labelled as “disabled” for having a habit that privileged people find annoying (which does actually happen), being nonconsensually subject to mind-altering “medical” treatments after the suggestion of surgically rendering her mute is dismissed, and, when they still find her annoying afterwards, implied physical violence. This is (presumably) justified by the person’s “annoyingness” being the product of a disability. In other words, it’s the familiar story of a difference being pathologized because it makes the people in power uncomfortable, that pathologization being used to justify non-consensual “treatments” to attempt to render them normative, and physical violence being done against them.

This kind of violence and abuse against people with non-normative neurologies (especially) actually happens, often, and it doesn’t happen in a void. If this abuse is normalized “everyone” thinks that abusing people who are identifyably non-normative until they are normative or silent, then it will continue. Anything treating this abuse as neutral or desirable contributes to a culture where it is normalized, a culture that actively injures, starves, and kills neurologically non-normative people.

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