Hell is other people. Hell is awareness without understanding. Instead of trying to convince me I am a horrible unempathetic (a load of shit, btw) half-human for not being willing to forgive truly shitty things and for not supporting the WAAAAH MY KID IS BROKEN pity party, let's talk about being an autistic adult in the world that this attitude has created.
Please!
Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.
Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.
Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.
Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?
Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!
Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.
(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)
Tuesday, May 24, 2011
Saturday, May 21, 2011
I don't have autism. I am autistic.
That's a thing I've been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others "have autism", are "individuals who happen to have autism", are "living with autism", or the ever popular "are individuals who just happen to have autism".
Those are a lot of words just to deny a fundamental part of who I am, huh? It's like people think if they wedge enough words between their identifier noun and the word autism, they'll pry the condition off of us.
I know that y'all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not "living with autism" or "having autism" or "an individual who happens to have an intimate neurological understanding from living with autism" or whatever.
It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it.
Since autism is like an operating system, you cannot separate it from who I am and how I work. Once you install Linux on your Windows machine (unless you are dual booting), it's not a computer that happens to be experiencing Ubuntu (or whatever). It's a Linux computer. It works differently than a Windows computer or a Mac, for example. It's not broken, it's different. As already discussed, you can't just go and change someone's operating system. It doesn't work.
Respect that. I am autistic. It's not a dirty word, I promise.
Those are a lot of words just to deny a fundamental part of who I am, huh? It's like people think if they wedge enough words between their identifier noun and the word autism, they'll pry the condition off of us.
I know that y'all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not "living with autism" or "having autism" or "an individual who happens to have an intimate neurological understanding from living with autism" or whatever.
It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it.
Since autism is like an operating system, you cannot separate it from who I am and how I work. Once you install Linux on your Windows machine (unless you are dual booting), it's not a computer that happens to be experiencing Ubuntu (or whatever). It's a Linux computer. It works differently than a Windows computer or a Mac, for example. It's not broken, it's different. As already discussed, you can't just go and change someone's operating system. It doesn't work.
Respect that. I am autistic. It's not a dirty word, I promise.
Thursday, May 19, 2011
Cure is an inane concept.
At least, it is when it comes to most of what I've got.
It means "restore health; recovery from disease". That assumes that we have a disease. It assumes that we are unhealthy. And, ok, there are a few labels I carry that could be seen that way. But my neurology isn't unhealthy or diseased. It's different.
But then people talk about 'finding a cure' and that is just such a simplistic idea. It sounds like they're expecting a compound to be discovered or developed that ennormalfies people. It doesn't work that way. The rainforest doesn't have a puzzle piece printed tree waiting for the leaves to be made into an autism-be-gone pill. It isn't that simple.
Something that would cure all the autistic people living right now doesn't exist. It cannot exist, not in the magic elixir form. Autism does not work that way. As much as I would love it to, neither does epilepsy.
"Curing" a neurodevelopmental condition would involve a series of risky and complicated procedures. There's a partial fix for some forms of epilepsy, and that's risky and complicated-they find the place where seizures originate, do a bunch of tests to map vital systems, and they remove the recalcitrant tissue. That's a complicated thing to do.
Autism would be more complicated. There's so much more directly effected in the brain. They'd have to rewire everything, then teach thevictims patients how to use their own mind completely from scratch. Doing it all in one go would be more than a mind could handle, I think-can you imagine culture shock related to your own cognition? Because that's what you'd be dealing with. Totally changing someone like that could have quite the devastating consequences-depression, anxiety, suicidal behavior, whatever they call that feeling of alienation from yourself...
You can't just change someone's operating system and expect it to work. Autistic traits are part of the very fabric of our being, if you had these procedures and yourvictim patient survived, no one would recognize them. They'd be a stranger and an outsider in their own body.
This started out as being "THERE IS NO AUTISM BE GONE PILL IN THE FOREST" and kind of went on a tangent.
Being me can be difficult sometimes, but I know me. There's no guarantee that the hypothetical invader would be an easier person to be. Changing the entirety of who someone is cannot be ok. Ameliorate the difficulties, but don't try to do that by erasing all of us.
It means "restore health; recovery from disease". That assumes that we have a disease. It assumes that we are unhealthy. And, ok, there are a few labels I carry that could be seen that way. But my neurology isn't unhealthy or diseased. It's different.
But then people talk about 'finding a cure' and that is just such a simplistic idea. It sounds like they're expecting a compound to be discovered or developed that ennormalfies people. It doesn't work that way. The rainforest doesn't have a puzzle piece printed tree waiting for the leaves to be made into an autism-be-gone pill. It isn't that simple.
Something that would cure all the autistic people living right now doesn't exist. It cannot exist, not in the magic elixir form. Autism does not work that way. As much as I would love it to, neither does epilepsy.
"Curing" a neurodevelopmental condition would involve a series of risky and complicated procedures. There's a partial fix for some forms of epilepsy, and that's risky and complicated-they find the place where seizures originate, do a bunch of tests to map vital systems, and they remove the recalcitrant tissue. That's a complicated thing to do.
Autism would be more complicated. There's so much more directly effected in the brain. They'd have to rewire everything, then teach the
You can't just change someone's operating system and expect it to work. Autistic traits are part of the very fabric of our being, if you had these procedures and your
This started out as being "THERE IS NO AUTISM BE GONE PILL IN THE FOREST" and kind of went on a tangent.
Being me can be difficult sometimes, but I know me. There's no guarantee that the hypothetical invader would be an easier person to be. Changing the entirety of who someone is cannot be ok. Ameliorate the difficulties, but don't try to do that by erasing all of us.
Monday, May 16, 2011
YAY ACTIVISM AND STUFF.
I attend the walks for choice that started as a response to the right wing war on women. It's really really easy to be in support of free birth control, free STD testing,accessible abortion, and other reproductive health care in the liberal city I call home. We've never been counterdemonstrated (which would be hilarious, but I'm kind of strange..) and we've had exactly one invective yelled at us. People here are overwhelmingly in support of keeping Planned Parenthood funded, keeping abortion legal, making sure that the definition of rape doesn't get so stringent that most women aren't able to deal with the already stressful reporting process, basic stuff like that. They may not be willing to walk through town chanting about free testing for everyone, but they're all for it on the inside.
The thing is, though, that there are big intersectionality issues with anything feminist. Women are not all the same. There are women of all races, women of all sizes, cis women, trans women, rich women, poor women, neuroprivileged women, neurodivergent women, women with visible disabilities, women with no discernible disability.
That is a LOT of diversity to cover. And while I doubt we have it perfect, the organizers are doing their damnedest. And I approve. Many feminist kind of things, even those that try to be inclusive, engage in some kind of erasure, be it that of trans women, or of women of color, or mothers, or disabled women.
I'm sure there's a group no one thought of yet in our area because of the privilege that comes with not being in any given minority, but I don't know who that is, and that's kind of cool. I dread so much feminist activism because of the erasure, and I am not erased. I may be the only disabled person there (more likely I am not), but the existence of people like me, and the fact that people like me also need sexual health services, is acknowledged.
They even asked me to talk about the ableism that occurs in reproductive health services. That's kind of cool. So many people think that autistic people, disabled people, are asexual perpetual children, that my experiences being acknowledged by a mainstream feminist movement makes me warm and fuzzy inside.
Inclusiveness: because all of us matter. Go (my town's) walk for choice!
(yes I realize some people reading aren't pro choice. Some may even be anti contraception, which is a mindset that makes no sense to me for reasons I assume are obvious. I'd rather not have a bigass OMG BABYKILLER argument here, since the main idea of the post is YAY NOT BEING ERASED AND YAY EMBRACING DIVERSITY, not YAY ABORTIONS).
The thing is, though, that there are big intersectionality issues with anything feminist. Women are not all the same. There are women of all races, women of all sizes, cis women, trans women, rich women, poor women, neuroprivileged women, neurodivergent women, women with visible disabilities, women with no discernible disability.
That is a LOT of diversity to cover. And while I doubt we have it perfect, the organizers are doing their damnedest. And I approve. Many feminist kind of things, even those that try to be inclusive, engage in some kind of erasure, be it that of trans women, or of women of color, or mothers, or disabled women.
I'm sure there's a group no one thought of yet in our area because of the privilege that comes with not being in any given minority, but I don't know who that is, and that's kind of cool. I dread so much feminist activism because of the erasure, and I am not erased. I may be the only disabled person there (more likely I am not), but the existence of people like me, and the fact that people like me also need sexual health services, is acknowledged.
They even asked me to talk about the ableism that occurs in reproductive health services. That's kind of cool. So many people think that autistic people, disabled people, are asexual perpetual children, that my experiences being acknowledged by a mainstream feminist movement makes me warm and fuzzy inside.
Inclusiveness: because all of us matter. Go (my town's) walk for choice!
(yes I realize some people reading aren't pro choice. Some may even be anti contraception, which is a mindset that makes no sense to me for reasons I assume are obvious. I'd rather not have a bigass OMG BABYKILLER argument here, since the main idea of the post is YAY NOT BEING ERASED AND YAY EMBRACING DIVERSITY, not YAY ABORTIONS).
Wednesday, May 11, 2011
Information Retention & Processing
So something I've caught a lot of crap about lately is that I don't retain everything I perceive. I have a phenomenal memory (as many of us do), but if something is presented in a way that's not very good for me, I don't move all of it from short term to long term memory. That's just the way it is.
However, what the people taking this to mean I cannot learn are not understanding is that I perceive far more than they do. I probably don't catch everything, but not much goes unnoticed. As I sit here now I am aware of the smoothie being made 25 feet away (it has bananas and berries), I am aware of 5 different conversations about 5 different things, I feel and hear the lights, including the one about to die 10 feet to my right, the butt groove in the chair I am sitting in, the crookedness of the table directly in front of me, the grinding of the coffee across the big open space, the smell of the daily special (I think it has sausage). When I go to the hospital or doctor I can remember the names of the nurses because they wear name tags. I notice what hand people prefer.
In other words, remembering even half of what I take in would be remembering more than many people indicate noticing at all. If I remembered absolutely everything I'd have more conflicting information than I can deal with-that threshold is already awfully close. Discarding some of those conflicting details is how I have cognitive capacity to learn new things rather than spending all my time justifying 2 opposite ideas as compatible.
So yeah. I learn just fine, thank you.
However, what the people taking this to mean I cannot learn are not understanding is that I perceive far more than they do. I probably don't catch everything, but not much goes unnoticed. As I sit here now I am aware of the smoothie being made 25 feet away (it has bananas and berries), I am aware of 5 different conversations about 5 different things, I feel and hear the lights, including the one about to die 10 feet to my right, the butt groove in the chair I am sitting in, the crookedness of the table directly in front of me, the grinding of the coffee across the big open space, the smell of the daily special (I think it has sausage). When I go to the hospital or doctor I can remember the names of the nurses because they wear name tags. I notice what hand people prefer.
In other words, remembering even half of what I take in would be remembering more than many people indicate noticing at all. If I remembered absolutely everything I'd have more conflicting information than I can deal with-that threshold is already awfully close. Discarding some of those conflicting details is how I have cognitive capacity to learn new things rather than spending all my time justifying 2 opposite ideas as compatible.
So yeah. I learn just fine, thank you.
Friday, May 6, 2011
Tumblr People:
I am thrilled and delighted that you are reblogging my stuff. Yay me yay you.
HOWEVER
When you comment on my writing, the only way for me to see it is to chase you all over the internets. This is inane. My stuff is getting like a billion comments on tumblr (other people's tumblrs, I don't have the bandwidth to have yet another blog) and here it gets very very few.
This bothers me. I like comments. I like conversation. It's all happening about me, without me. Not cool. And I shouldn't have to chase all over the intertrons to see what people think (and blogger doesn't do the linkbacks with tumblr so I wouldn't really know where to start even if I wanted to and had the time to).
Commenting here isn't hard, I promise. And I like seeing what other people have to say.
HOWEVER
When you comment on my writing, the only way for me to see it is to chase you all over the internets. This is inane. My stuff is getting like a billion comments on tumblr (other people's tumblrs, I don't have the bandwidth to have yet another blog) and here it gets very very few.
This bothers me. I like comments. I like conversation. It's all happening about me, without me. Not cool. And I shouldn't have to chase all over the intertrons to see what people think (and blogger doesn't do the linkbacks with tumblr so I wouldn't really know where to start even if I wanted to and had the time to).
Commenting here isn't hard, I promise. And I like seeing what other people have to say.
Tuesday, May 3, 2011
The Privilege of Ignorance
Something people who talk about privilege don't talk about much:
Part of your majority privilege is the luxury of being ignorant.
I have heard so many times "I didn't know strobe lights were problematic". Really? REALLY?? I do not understand, what with the signs and warnings on things and the hurrhurrseizure jokes that people who wouldn't know a seizure if it bit them on the ass make. People who don't have epilepsy don't have to worry about it, even a little, so they make their inane jokes and gloss over the warnings and notifications. They don't realize how many lights are everywhere. A friend even said to me this week that he didn't realize how much flashy crap is everywhere until we started hanging out. Most people have the luxury of not giving a shit.
People are blissfully unaware of noises. They are blissfully unaware of smells. Oh so many people are blissfully unaware that their behavior and language marginalizes people. I had a dean at a college tell me she didn't know what erasing a person is while she was doing it. People have the privilege of not knowing the first thing about a person or group of people while simultaneously treating them as less-than. Many men are utterly unaware that being a woman is sometimes absolutely terrifying. People without disabilities are utterly unaware that being a disabled woman is even more so. They don't have to know.
I recognize there are things I have the privilege of ignorance about as well. I do not have to be aware of sidewalks and curb cuts and such, for I do not need a mobility aid. I know these things are problematic, but I don't have to think about them. There are a number of aspects of GLBTQ existence that I am unaware of because they aren't part of my every day life. I recognize that I am privileged in this way, that a lot of people do have to take a whole lot of other factors into mind, but that doesn't mean I know what they are.
In short, ignorance of other people's daily existence comes with privilege. It isn't someone's fault that they have that privilege, but it is their fault if they refuse to acknowledge it.
Part of your majority privilege is the luxury of being ignorant.
I have heard so many times "I didn't know strobe lights were problematic". Really? REALLY?? I do not understand, what with the signs and warnings on things and the hurrhurrseizure jokes that people who wouldn't know a seizure if it bit them on the ass make. People who don't have epilepsy don't have to worry about it, even a little, so they make their inane jokes and gloss over the warnings and notifications. They don't realize how many lights are everywhere. A friend even said to me this week that he didn't realize how much flashy crap is everywhere until we started hanging out. Most people have the luxury of not giving a shit.
People are blissfully unaware of noises. They are blissfully unaware of smells. Oh so many people are blissfully unaware that their behavior and language marginalizes people. I had a dean at a college tell me she didn't know what erasing a person is while she was doing it. People have the privilege of not knowing the first thing about a person or group of people while simultaneously treating them as less-than. Many men are utterly unaware that being a woman is sometimes absolutely terrifying. People without disabilities are utterly unaware that being a disabled woman is even more so. They don't have to know.
I recognize there are things I have the privilege of ignorance about as well. I do not have to be aware of sidewalks and curb cuts and such, for I do not need a mobility aid. I know these things are problematic, but I don't have to think about them. There are a number of aspects of GLBTQ existence that I am unaware of because they aren't part of my every day life. I recognize that I am privileged in this way, that a lot of people do have to take a whole lot of other factors into mind, but that doesn't mean I know what they are.
In short, ignorance of other people's daily existence comes with privilege. It isn't someone's fault that they have that privilege, but it is their fault if they refuse to acknowledge it.
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