Thursday, August 25, 2011

"Wouldn't your life be easier if you didn't identify as autistic?"

I've heard that question a lot lately. Well, enough to justify thinking & writing about it. It sounds like a simple question, but when you think about it, there's a lot of complicated nuance involved.

Yes, my life would be easier if I didn't identify as autistic. No, my life would not be easier if I didn't identify as autistic.

People have a great deal of prejudice about autism & other developmental disabilities. I've been bullied out of activities and classes because I am autistic; I've been discouraged from even trying others. People and professionals who are 'familiar' with autism but unfamiliar with me assume that I am less capable of many things than I am-usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks-having to prove my humanity & my individuality over and over and over and over again is exhausting.

The thing is, I don't really pass. I shouldn't have to, either, but even if I wanted to, I just don't. There are things about who I am that scream DIFFERENT. People probably don't peg me as autistic right away-they aren't used to thinking of autistic and adult in the same sentence-but they know damn well I am not of their tribe. Abberation is a crime whether there's a name for it or not.

Distancing myself from the term 'autism' doesn't mitigate the problems (or strengths) that got me the label in the first place. I am going to be labeled in some way whether I let my neurodiversity freak flag fly or hide it in the back of my junk drawer. Being oversensitive, undersensitive, unaware, overaware, strange, belligerent, overly predictable, unpredictable-all of these things are unsafe to be, regardless of diagnosis or lack thereof.

The fact of the matter is, I am autistic. If I didn't identify as such, I would be doing myself (and I like to think the autistic community as well) a huge disservice. It's who I am, easy or not. Owning who I am is a big part of getting other people to accept that I and people like me are really real human beings rather than damaged goods. If it's something that is so bad that I cannot acknowledge that it's part of me, why should I expect people to treat me and mine as equal? The short term convenience of possibly almost passing just isn't worth the long term consequences to me and my autistic peers.

Call it what you will-my brain is autistic and my experience is autistic. It isn't the easiest identity or neurology to live with, but it is mine.

I think the answer just came out to "no, it wouldn't be easier. It'd just be hard in different ways".

Friday, August 19, 2011

To the Girl in Missouri Who Was Attacked At School

**possible trigger warning.**

Hey there,

I don't know your name (and because of how hateful people are, I am quite glad that who you are hasn't made the media-you've had enough awful stuff from people for at least 2 lifetimes), but I do know we have a few things in common:
-We're both women/girls/otherwise female
-We're both disabled
-We've both been maltreated
-We've both had people with power fail us miserably

There are some things that you probably aren't hearing enough of.

It wasn't your fault. Nothing you could possibly have done warranted rape, or being forced to apologize to a rapist, or being assaulted, or being expelled, or being raped again. Nothing. Nothing. Nothing.

You did the right thing. The right thing is really hard to do, because women are too often deemed responsible for bad shit that happens to us, and disabled people are too frequently viewed as not real people. That is a load of crap-you have every right to expect to be treated right. Reporting may have been the most difficult thing you'll ever do, the fallout has sure sucked, but it was the right thing. Even if you didn't know how brave it was at the time, it was courageous. Not just because you are a kid and have a disability, but because it takes a strong person to stand up for herself.

A large number of the adults in your life utterly failed you. There is no excuse, none at all. It seems like your mom is fighting pretty hard for you, but that the people at your school are fighting back, and that's disgusting really. There is nothing you did to deserve how they are handling this. Nothing, nothing, nothing. In your place I'd feel that there was nothing the school could do to make it better, but that doesn't mean they shouldn't try.

There are a lot of people out here who are outraged by your treatment. We are on your side. Some of us are women, some of us are rape survivors, some of us have disabilities, and some of us are just people who are horrified and outraged by what you've been put through. You have allies, even if you don't know us and we don't know you. WE ARE ON YOUR SIDE, and we are hoping that you get justice, and we are hoping that you are ok. We are hoping that you get what you need to thrive as you continue growing up.

In support and solidarity,

Neurodivergent K

Wednesday, August 17, 2011

We Aren't Here to be Your "Resource"

And it's fucking insulting when people say we are.

Autistic adults are not here to explain to NT parents what autism is like. Shocking, right? We are not a 'resource'. We are human beings. We have our own interests and lives and opinions and experiences.

Suggesting or acting as though our only value is in explaining autism to people who know an autistic person is displaying a shocking lack of empathy. All the literature used to say that autistic people used other people as tools. They said this apparently without irony, as that characteristic is way more descriptive of "translate my child" parents then it is of any autistic person I know.

Seriously. How is it even ok to act like 'letting' us tell you what it's like to be us, or what it was like to be us 10 years ago, is something we owe you? We don't owe you anything. It is arrogant and ableist to act like because you tolerate our existence, we owe you all the 'insight' you ask for.

Bonus points, by the way, for parents who want our 'insight' but otherwise want us to shut the hell up. If you want to know what I think about something-and I feel up to telling you-you're going to get exactly what I think about that something. We don't exist to make you feel better about how you think about or treat your autistic kid, either.

You aren't doing us any favors demanding we tell you about our neurology or insisting that we agree that your choices for your child are wonderful-we are doing you a favor by indulging these questions if we choose to do so.

Monday, August 15, 2011

And Then I Land In the ER Again...

I spent Saturday feeling kind of crappy, tired, low energy, even took a nap. I don't nap.

Then comes nighttime, when I got all nauseated (and promptly started eating antiemetics like candy) and lightheaded and dizzy and spaced out and fell over when I stood up.

"Fuck. Fuck this all to hell", I say.

See, I have adrenal insufficiency, and I was showing signs of adrenal crisis, which can be fatal. My pulse bottomed out at 38 or so when I was at the ER, so it's good that I went, but it sucks.

I can't forget, not even a little, that I have a marginalized brain. It's all around me. I don't understand people, they talk to me like I can't understand anything because of how I speak, the autism tragedy items are everywhere. Because of epilepsy, I am not allowed to drive, there are seizure-causing strobe lights on bikes and police cars and parking garages and a German restaurant (no, really, I have NO IDEA why either). The message comes through loud and clear: this world is not made for brains like mine, the world thinks brains like mine are inferior, and if my brain wants even a little consideration I am going to need to fight for it. Accessibility policies rarely address that brains like mine exist and need accommodations as well-there is no escaping that I have a marginalized brain, and I'm pretty used to that.

But I can forget I have a marginalized body. For the most part, it can do anything I ask it to do-I can dance, I can climb, I can do flips, I can navigate my environment with relative grace and ease. In my base state, I don't have a marginalized body at all. The world is set up for people with my physical abilities to do their thing efficiently.

But then I throw up, or I break a bone, or in the case of Saturday, a black cat crosses my path. Then I remember that my body isn't something I can use as nonchalantly as other people can use theirs. You can't tell, I go weeks at a time without being conscious of it at all, but this strong and coordinated body I inhabit is fragile indeed. When the shit hits the fan, it goes critical in a big way.

Since I don't think about it much-I take replacement steroid along with my anticonvulsants and I carry an emergency injection kit-the whole thing freaked me out. Generally speaking, adrenal insufficiency impacts the day to day running of my life not a bit. For me, at least, it is a rare and uncomplicated metabolic disease. Take pills every day, don't throw up, don't get significantly injured, all will be well.

Then it slapped me in the face out of nowhere and I remembered that it is a big thing. And the ER people made it pretty clear that they didn't find this sudden failure of homeostasis (which is basically what an adrenal crisis IS) to matter a whole lot-I got the steroid replacement about 3-4 hours after I told them that I felt like I do after I throw up, 2-3 hours after my pulse hit 38, hours and hours after I told them that it was all wrong.

And it wasn't cool at all. In terms of ER treatment, there was probably a bit of intersectionality-my chart says autism, so they didn't realize my inability to make even a little sense was, like, a thing. And I'm a woman, so of course if I am not actively being mauled by a bear it's not necessarily really a real thing. I heard that attitude before, actually, right when I was diagnosed with adrenal insufficiency-and then they saw that I'd been functioning on 1/4 normal cortisol levels and were revealed to be misogynist shitfaces.

If it had been out of nowhere seizures, I have adjusted to those being the occasional addition to my life, but no-precipitant adrenal crisis really scared me. I already restrict some of what I do because of seizures, I'm more cautious of going places alone then I'd like to be because of seizures and autism related communication issues--I was ok with AI being something I don't acknowledge much. After this one, though, I'm going to be wary for a while and it sucks!

Wednesday, August 10, 2011

New Project

I have a new project, and if people wanna help, they are awesome and amazing.

Basically, a lot of stuff exists to help NT's cope with their autistic kid/employee/husband (why is it ALWAYS husbands? Anyway...).

But there's nothing on interneurology friendships. Nothing. Nada. This is a deficiency I wish to rectify.

So if you're an autistic person who has good things to say about nonautistic friends, and things to say on the making and maintaining of those connections, and you want to, message me in some way. Or leave a comment and we'll get a conversation going. If you're a neurotypical/nonautistic person who has or had good connections with autistic people, same.

Thank yooooou!

Monday, August 8, 2011

Body policing & erasure & such

-Yes, I realize I have some thin privilege. That doesn't stop what specifically I am writing about from bothering me.-

There's no good way for me to start this. So I'm just going to start throwing words out there and it'll sort of maybe make sense.

One of the big slogans, for lack of a better word, that I've heard a lot of in reaction to the predominant unrealistic female body type seen in the media is "real women have curves!".

By that measure, I am not a real woman. That measure excludes many many women. Many athletic women aren't particularly curvy. Many trans women aren't particularly curvy. A lot of women of all sizes are, in fact, not particularly curvy. It's body policing to exclude even one of these groups of women from the category "real women". Those skinny models who it's fun to hate on? ALSO WOMEN.

This is something that has bothered me for a while, because, well, I am a woman and I have no curves. I wasn't going to say anything about it until a website that seeks to have photos of women of "all" body types came to my attention.

"All" body types includes:
-banana (straight up and down, shoulders and hips and waist all pretty much the same width).
-pear (wider hips than shoulders)
-apple (widest in the middle)
-hourglass (I'm gunna go on a limb and assume you know what that is)

According to their classification of "all" female body types, I don't have one. I'm much wider at the shoulders than the hips, & pretty much straight up and down from the armpits on down. There's no cute fruit name assigned to that. I know quite a few grown women who are shaped like me, and a lot of growing young women who are going to be shaped like me. As a teenager and young adult, some of the adults in my life joked that I was built like a very tiny man, but I was under the impression they were kidding.

So there's a whole visceral "well that sucks, yet another way women who happen to be me don't exist". But there's also the whole thing where body acceptance isn't a zero-sum game. Or shouldn't be.

We shouldn't police women for having the "wrong" shape or size in any direction. I wouldn't dream of saying something hateful about someone larger or rounder than me, but when in the name of empowerment someone (a real someone, not a strawwoman) yells at me to eat a fucking cheeseburger or calls me anorexic or pinches me somewhere not soft (pretty much anywhere) and proclaims that real women have curves...well, I don't see how that's empowering. Disempowering someone else isn't how empowerment works.

(and that isn't even getting into how being a disabled woman intersects with this, or how accusing someone of anorexia maliciously is ableist bullshit, or a lot of other things).