31 October, 2010

Reality testing

Last spring, depersonalization was kind of a political act. I'll go more into detail another time. Stuff is a lot better now for various reasons. And I know disability-as-metaphor is dangerous, but it is my disability and my metaphor.

If I'm disabled, and I know I am, and people don't know that and people don't see that, then what I think I know is not real.

If people with disabilities are real and vibrant people, and I know them, and people think of us something other, something sad and tragic, then what I think I know is not real.

If writing here and meeting people through this is a really important, special thing that's changed my life, but no one can see it when they look at me and people think the Internet isn't real life, then what I think I know is not real.

If I need help but I don't look like I need help and I half the time think I'm lying and exaggerating about needing help, and I don't have current documentation to prove I need help, then what I think I know is not real.

If people who say they are my friends, family members who say they love me, can explain without feeling concerned why they wouldn't (or didn't) want a disabled child, why it's okay to talk about disabled people in negative sweeping terms, and these people love me, and I'm still me, then I'm not me, and what I think I know is not real.

So then why is it wrong to sometimes feel like there is no difference between me and characters on TV? Or like my friends are not really my friends, but just a bunch of fake memories imprinted on my brain, leaving me nervous to talk to them because I feel like it's the first time, the first real time, like I'm a clone that has slipped into Amanda's life and is trying to proceed as normal?

I mean, if all this is true, I could be a Cylon.

(I'm making a pun, reality testing remains intact--at least as far as I know.)

Autism is a world and you're not invited

(This was going to be my Autistics Speaking Day post but then I accidentally wrote something else. So this is like my pre-game.)

Now, I have a tendency to say things about other disabled people, like, "Well he can't see, but it's not such a big deal to him, he knows how to get around" or, "Well she can't walk anymore--so she's using a wheelchair now." I end up interjecting this tone of forced mellow when I hear other people saying things like, "Oh it's so sad she can't walk..." or, "Oh and he's *blind*...."

Sometimes people say that I am being insensitive and implying that just because someone has a way of getting by, they don't have a hard time because they're disabled. The reason I end up saying forced mellow things, though, is because I feel like saying, "Oh it's so sad..." or, "Oh I'm so sorry..." is really invasive. It's their thing to feel sad about, not yours. Glossing over the hard parts of disability, if that's what I'm doing, is not really any more biased than emitting massive rays of sadness in the direction of someone else's experience.

Especially if you have a lifelong disability, like I do, massive rays of sadness can really creep you out. When explaining I am disabled I find myself wanting to say something like, "I have autism, it's pretty boring. It's not a big deal." However, if I said that I guess it would have to be followed by a qualifier: "I mean, it's a big deal for me, but not for you."

I really don't like when people make a big deal out of the way I move, react, and speak (form and content). I used to think that I should be working harder to act and communicate in a way that people wouldn't have anything to say about. The thing is though that I already try to be polite and pay attention, and I feel like that should be enough--I don't know how many years it would take to blend in completely, if it even happens at all, and I don't know what the emotional effect on me would be. So I prefer to be like, "Hey, can you just chill out about the way I talk, I have autism. Thanks."

The problem is that my disability comes in two parts: the part that most people can see, and the part that I actually have to live with. I don't really think the way I talk is a big deal. However, I'm pretty affected by central coherence/transition problems and anxiety, and those things are a huge deal and often kind of a scary thing.

It is my choice not to try to get school or work accommodations, even though all my issues could be fairly easily accommodated. Because these kinds of brain problems are hard to quantify, I'm extremely leery of explaining them to people who might think I'm being dishonest. At school, the kind of tasks you're required to perform in order to get accommodations are things I'm often not mentally or emotionally capable of doing; so the process of getting accommodations would be harder than doing without them. I would never ask for accommodations at a job out of fear of being seen as incompetent (given the chance, I try to avoid them knowing I even have a disability diagnosis).

Actually now that I said all that I'm not sure "choice" is the right word to use, but I guess the point is that, for me at this juncture, the bad/internal parts of my disability are things that I very much keep to myself as much as possible. "Myself" is not just me though, it is also some of my friends who either have disabilities or just are awesome, who I'm able to talk to and get help from regarding the brain stuff. They are people who can come inside my disability with me, and it's nice to have their company.

But you can stay out there, please. I'm fine. I mean, I'm actually not fine as in "looks different but is able to do the same things as anyone else." I can't do some things and sometimes I feel super bad about it. But no matter how bad it gets it is never an occasion for some other person to feel bad about my disability in some existential, abstract way. I would really rather someone just be cheery about it--"okay you have autism, that's cool, just like some people have blue eyes"--than try to insert themselves into my disability with me when I didn't invite them.

29 October, 2010

brain problems

There's a limit to the amount of moving/forcing my brain around I can do, especially if I'm in a situation where I am cooking and cleaning for myself, dressing myself, and making some of my own schedule (you can call these transition problems, inertia, executive function problems, weak central coherence, and many other overlapping things). And there's a limit to the amount of anxiety I can endure (I experience anxiety about many many things, including changes in routine, noise, lots of social situations although not the kind you think, and about the brain problems in general).

I'm a person. Sometimes I get tired. Sometimes I have to feel safe. Sometimes I have to do things that feel really good. But due to anxiety and transition problems, it is hard to know if I will ever get out of doing something that feels good, once I start.

I'm very afraid that it won't ever be safe for me to live on my own, and also that I'll never be able to be a parent and that the kinds of jobs I'll be able to do are somewhat limited. Even a year and a half ago, I didn't understand all this about myself--how much stuff I can't do consistently. (I almost think it would be easier if it was things I straight-up couldn't ever do, but that's not it. It makes it harder to explain, and it makes it harder to forgive myself when I fail because I know I've done it before for very brief periods.)

When people say I'm high-functioning I want to cry and then punch their lights out.

The end.

28 October, 2010

so I just rewatched Gattaca (after seeing it and really loving it four years ago) and I seriously almost cried it's so awesome...the problem is it's actually sort of super ableist in its own way. Like, people with invisible disabilities should just follow their dreams, but people with visible disabilities, not so much.

I can think of a loophole out of this so I can still love the movie and not feel bad. But I feel like I'm cheating. Can anyone help?

new project, please help

I made this tumblr called What is "high-functioning?" which is an attempt to define the term once and for all, using the Lemony Snicket "a word which here means" paradigm.

You're supposed to be able to submit to it, which might only work if you have a tumblr, but maybe you have a tumblr. If you don't, you can just tell me what to write. I just want to anthologize every single possible use of the term. So please submit stuff that people have said about you, people you've worked with, your family members, famous people, etc.--what did they mean when they said "high-functioning" or "low-functioning?"

27 October, 2010

confessions

So you guys, I kind of think FDR is awesome.

I was reading this person's blog saying that he's not a good role model for disabled kids, which intellectually I get is totally true, but does anyone else find passing kind of swoonworthy? I remember when I was in high school being super enchanted by the movie Gattaca and not really understanding why at the time. But passing is so cool! It makes you feel so smart.

And passing is like smoking--looks awesome, not good for you. Except that doesn't work because passing hurts everyone, so passing is more like not recycling. But sometimes when you are tired don't you just throw your bottle of soda into a trash can because you don't know where to find a recycling bin?

I try to recycle. And in the past maybe six months passing has kind of stopped being a part of my identity--although I do get passed off of course, but that's not who I am. I know that it is better for me in a lot of ways, but I kind of miss passing, i.e. the act of actually calculating how best to frame myself or just flat-out lie. I just felt really clever and calculated and yeah kind of evil but in a cool way.

It's sort of a thrill. I don't know. Life Is Better. But if passing wasn't kind of fun, and if passing--my own and other people's--didn't make me sort of delighted in a mean, fucked-up way...well, maybe I'd feel more okay rejecting FDR.
I don't have time to write this but I want to talk about instant gratification. It's a reason I'm a behaviorist even though behaviorism is so often terribly applied.

I tend to try things one time and then give up. And I know this seems lazy or greedy or something. But the point is that even getting myself to the beginning of things is so scary and tiring that if the thing doesn't turn out well, it's completely devastating. So things need to work right away.

And I think for some people, the risk that is scary/tiring can be a very small risk, as small as trying to understand what someone else is asking you to do. So, M&Ms.

26 October, 2010

eyeballs to entrails

Loving another passing person is an intensely powerful experience.

By passing I don't just mean people who hide the fact that they're ASD, but people who may be identified as ASD but are considered to be "really high-functioning" or exceptions. What I'm thinking about as the primary characteristic of such people is calculation. Pretending to understand or not understand, trying to be charming, desperately trying to appear valuable in some area, or to remind someone of their disabled brother so they'll look out for you. Crying on purpose to get a break. Doing anything possible not to cry. Becoming comic relief. Dressing like you do drugs so you don't have to explain.

The feeling you experience is a feeling of sliding into home base constantly with nanoseconds to spare.

Getting what you need by sneaking around and manipulating it out of people; moving until you're about to drop dead; constant running commentary in your head about how much you're fucking up.

These people feel brilliant and veer between terror and immense arrogance. When you are constantly dissembling you feel like you could take on the world but you also feel incredibly alone. And you feel like you're made out of paper sometimes. You feel like you've borrowed someone else's momentum--like you're going really fast and that's really cool, but you could also smash into a brick wall and crack your head open, but it would be stupid to stop because it's possible you'd never be able to get moving again.

Loving another passing person is an intensely powerful experience, and if you know what I know you know what I mean. It's like being blood brothers. Not being blood brothers, but the act of pressing the inside of your arm against the inside of another person's arm. That's where we are now.
There are lots of ways I managed having a disability when I was in high school. For example I used timers for everything, like taking showers and getting dressed.

When I got to college I was embarrassed I guess.

Now that I live in a house I guess I want to start using timers again because they were really effective. It's just weird to think that I never really thought of those things as autism-related. And I know it's because the view of autism I had was so narrow. Once my problems weren't the extremely stereotypical problems, I just started thinking of myself as being "better" and my real problems were nameless.

It was funny at camp when I noticed my camper Tim, who is my age and has Down Syndrome, also uses a timer. And a really nice feeling too.

Sometimes I feel that life will never be as easy as it was in high school--I mean I'm a lot happier, but my shit for brains/curds and whey is really starting to show and become inescapable.

(this is very 2nd-grade but that's what the Internet is for)

turn off the clocks
turn off the timers
turn off your phones
turn off you're alone

you are mine
outside space and time
the same old lines
inside space and time

turn off your scripts
they don't work on me
they cut me deep inside
where I've got the same old lines

you're mine
'cause we've got the same old lines
you could be me inside
outside of space and time

turn off the clocks
turn off the timers
turn off your bones
turn off

you're alone

(for some reason I always feel very driven to write love songs about scripting/passing and maybe a lot of them. which is actually probably less cheesy than other ideas for concept albums I've had.)

20 October, 2010

disabling queerness: Fingersmith

Before I start, there are two kinds of ASD (or generally mind-disabled) characters, besides those who are actually canonically identified as having ASD. There are people like Pete Campbell where I sincerely think that if they were a real person born in 2000, they would be diagnosed with ASD. Then there are people like River Tam from Firefly, who obviously doesn't literally have ASD or schizophrenia, because we know that her ASD/schizophrenic traits come from emotional trauma and brain injury. If I write something "reading" River as a person like me, I'm not trying to deny the canon of the show, but just saying that functionally, she is kind of like people with certain disabilities, and can be identified with/claimed by us.

The character Maud Lilly, from the book and movie Fingersmith, is the second kind of character; she comes off as being like a person with ASD because of her life experience. Although this isn't the reason I love the book and movie--they're just incredibly fantastic and creative--it is probably the reason I find the love story so affecting, because Maud's experience of infatuation is so much like mine.



If you are interested in watching the movie or reading the book Fingersmith, you should probably know that there's a big twist and it has to do with exactly what this post is about. I knew the twist beforehand and I still love the book and movie, but if you want to be surprised, you should stop reading here.

Okay. (I'm talking about the book, but the movie doesn't change any of the facts--it just doesn't focus in on Maud's adolescence and sexuality as much as the book.)

So Fingersmith is a gothic novel about a 19th-century teenage pickpocket, Sue, who is hired to scam a sheltered girl named Maud. Maud lives with her uncle in the country and would inherit a lot of money from him if she ever got married--but it seems like she never will get married because she's so isolated. Gentleman, a con artist, is planning on marrying her and then getting her labeled as "mad" and put in an institution so he can have her money.

Sue's job is to be Maud's maid, become friends with her, and do anything possible to get her to fall in love with Gentleman and elope with him. Sue narrates in the movie, "When I saw her I thought: 'This is going to be easy.'" Maud is very stiff and soft-spoken and has nightmares every night (during which she begs Sue not to leave her alone). Sue has grown up taking care of babies and young children, so despite her plans to hurt Maud she has an instinctive protective reaction to Maud's anxious, childlike nature.

Maud is "developmentally delayed"--I don't use this as a euphemism for intellectual disability, but as a term for something that most disabled young adults have, both because of disability and as a result of being sheltered and not learning to be independent. Maud is young for her age. She does not understand how to do a lot of things that most people her age know how to do.

Sue becomes very attached to Maud, and ends up kissing and having sex with her because Maud claims not to know how to have sex. But she doesn't know how to stop what she's doing, and the con continues as planned. In the days after Maud and Gentleman have gotten married, but before Maud is institutionalized, Sue becomes more and more distraught and depressed about betraying someone she loves, someone who is so innocent. Then Maud steals Sue's identity, and Sue is institutionalized as Maud Lilly. Sue realizes that Maud was actually working with Gentleman to scam Sue.

The twist of the story is that Maud isn't a "pigeon," the term Gentleman uses for an easily manipulated person. This is already a "fuck yeah" moment for disabled readers. But what's even cooler is that Maud wasn't faking very much. She really is developmentally delayed and she really does have nightmares, and she really is very stiff and impaired when it comes to other people. Nonetheless, she is calculating and capable of doing evil.

The unevenness of Maud's abilities, the fallacy inherent in categorizing her as "childlike" or "adultlike," is encapsulated by her knowledge of sex. In the second part of the book, which is narrated by Maud, we learn that her uncle collects pornographic writing and images, and she has been his secretary since she was a child. The servants in the house don't know what her uncle's library consists of, and became unsettled by Maud because she would use sexual terms at a young age; this led to her losing their motherly support, after which she began to bully and harass them. Her uncle's friends are attracted to Maud when they visit the house and she reads porn to them--they think of her as sexy, impure, and probably available, though of course she's never even kissed anyone. After Maud has scammed Sue and is living in London, she tries to get help from one of her uncle's friends, but he refuses to associate with her because of her reputation.

Maud can't be categorized as a virgin or a whore; she is physically and emotionally untouched, but seen as damaged goods because of her intellectual knowledge. To me, the most beautiful passages in the book are those describing Maud's attraction to Sue--her surprise at realizing that something she's very intellectually familiar with could actually happen to her; that sexuality isn't the boring, mildly disgusting thing she always thought it was.

After putting Sue in the institution, Maud realizes that she is in love with Sue and wants to save her. But it's very difficult for her to do anything because she has no common sense or understanding of how to move around in a city. I won't summarize the rest of the book, but don't worry, everything turns out awesome and there are some more twists. I basically just want to talk about what a great mind-disabled character Maud is. She comes off at first as being completely guileless and unable to do anything. Then we find out that isn't true at all and she's a force to be reckoned with, but her disability doesn't just disappear; there really are things she can't do. And she's neither good or evil, she's both, just like all the other characters.

disabling queerness

People are always talking about queering stuff but I'm interested in disabling stuff. Specifically, mind-disabling it...um, DD-ing it, mainly.

What do I mean?

Well, I guess I have posted a bit about how when I was younger, I saw other people less destroyed by being queer than I was, in similar situations. And I had a feeling of guilt--of not just being able to say, this is awful--because other people were more okay than I was. But I was less socially and emotionally stable than they were, to begin with, so I couldn't just ride it out as easily, if that makes sense.

This is a reason I don't like "strong queer characters" (or strong anything characters, really). They're like the supercrips of queerness. If these people can be so "sassy" and brave and resilient, then "we" (the straight people watching) don't really need to try to make the world safer and more welcoming for them; just tolerating them is enough. And "we" (queer people) don't try that hard to support people, or think that people who are having a really rough time have a right to, because we managed so they should be able to.

I got distracted while I was writing this and now I'm going to take a nap, but I was mainly thinking about Alistair from Huge because he had such a powerful effect on me. He obviously isn't a helpless person--that is not what I mean by saying I want disabledness--but he is not like the other kids for other reasons than being queer/gender-variant. And one imagines that if he was just queer/gender-variant, it wouldn't be as big a deal.

More on this later.

19 October, 2010

I found this picture while I was reading about the Holocaust on Wikipedia (how jolly for me):



I guess the thing is, I love this picture, and I even considered posting it without saying what it was from, but that seemed creepy I guess. It is just rare to see such an old picture of disabled people, and they're such beautiful kids--I wish I could just keep this and look at it all the time without thinking about where they are and what happened to them later.

18 October, 2010

take one

I have been thinking about the interesting fact that I am now as developmentally disabled as I'm ever going to be unless I get hit by a car in the next three weeks. Which is to say, people who receive brain injuries before the age of 22 have those injuries classified as a developmental disability. Since I found this out a few years ago, I have occasionally thought about it because I often get confused when I am driving and crossing the street. It would just take a minute and then I'd have two developmental disabilities instead of one.

I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."

I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.

But sometimes I do.

***

I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.

So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.

If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?

I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.

I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).

Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.

When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.

I am not working with those people. I do not look like them. I will do anything not to look like them.

In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.

***

To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.

I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.

I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."

I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.

***

I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.

I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.

16 October, 2010

self-centered fiction fun

(I had some ideas about "minority experience writing" but I just got excited and started describing everything I'm writing now. Sorry. I like writing because you don't have to feel bad because people can just ignore the parts that are boring.)

I think writing that sets out to "make a point" is bad. however, I generally write with the intention of feeling less alone or, yeah, let's be honest, sometimes making a point. But when I am making a point I develop love for the characters, or else I might as well just be writing on my blog.

I generally write about queer and/or disabled characters. I actually was thinking about stuff I wrote in high school and I realized that even during periods when I buried my disabled identity (11th-12th grade and some of my first year of college) almost everything I wrote had characters who could be read as having disabilities (a limp, an eating disorder, intense anxiety, kleptomania, and of course ocular albinism). I sometimes don't like to identify characters as having autism and other fairly newly recognized disabilities, because I write stuff that is somewhat stylized and I think it breaks the style--but at this point I certainly am personally aware of my characters' disabilities.

I've been kind of distractedly working on a novel for almost two years (hoping to work much more consistently on it next term, as an independent project) that is kind of a parody of 19th- and 20th-century fiction about "inverted," traumatized ssa people. The main character is a female-assigned teenager who's attracted to girls and had a very gory, gothic childhood. She starts going to boarding school after being homeschooled and isolated for years, and has a sense of passing as female, and heterosexual, but really just passing for everything because she's so nonstandard. She has a frame for thinking about her difference which is constructed out of basically every possible ssa and gender-variant horror/gothic trope, which isn't exactly overturned in the story, but isn't really supported as being anything more than a coping mechanism.

The secondary characters are a twin brother and sister and the main character is torn between her intense friendship with the brother, the only person to whom she doesn't pass, and her crush on the sister (who for most of the story she doesn't relate to as a whole person because her idea of romance is literary to the point of being medieval). Anyway, I originally had the brother being in love with his sister because that's a trope too, but then I didn't want that anymore but I wanted a different kind of attachment that would function in the same awkward/possessive way.

So, then I made up a whole backstory for them, which is basically that the brother is disabled and was stigmatized for it in their family, and that even though he's not obviously disabled by the time he is a teenager, he has an almost crushlike distance from his sister--he loves her and wants to be close to her, but he also feels extremely inferior to her. He resents his "invert" best friend's crush on his sister, because he thinks anyone he can relate to isn't good enough for his sister to be with. I liked this backstory so much that I got off track and have spent the past year writing completely non-gothic stories about this kid at the age of ten or twelve, growing up with an "invisible" disability and a non-disabled twin.

Last week I wrote my favorite version of this story so far, which I liked because it was the first version that was funny and angry instead of emo. It was just a story about this kid with a lot of weird obsessions and a feeling that he isn't human. I turned this story in to my fiction workshop and got like...surprisingly devastated by the results. For one thing I really liked the story and no one in my class seemed to like it. For another, everyone seemed to be talking about his thought processes and his obsessions and his anger in this really pathologizing way, which was kind of stressful...I don't know.

I didn't want the story to have an "agenda" exactly but I did feel political about it. Basically, I just wanted the reader to be on the character's side and see his meltdowns as not just a symptom of his disability, but a reaction to the way he's pathologized/othered at home and at school. The story was very restrained in a way because it mostly just described the character's interests and ideas, and didn't really explain why he had meltdowns--but I guess I was surprised it wasn't obvious to most of the people in my class. I guess I shouldn't turn in disability-heavy stories to workshops, because I'm a senior creative writing major and this was the only time I've ever cried and not been able to sleep because of a fucking workshop. So weird. I feel like a loser.

I was complaining to Noah about it, almost a full week later, and I said something like, "I want to normalize the experience of oppression." What I mean by that is that I don't want to write stories that are like "LOOK AT THIS OPPRESSION SOMEONE IS DOING TO SOMEONE ELSE." No one experiences life that way. I want to write stories that are good stories, with good characters, and when the characters are queer/disabled sometimes they are affected by that. And sometimes it's funny and sometimes it's annoying and sometimes it's sad and sometimes it's all of those things, but is not explicit and obvious or the "main idea" of the story, because oppression is the main idea of no one's life (except this guy).

It kind of reminds me of True Blood. It always annoys me when people are like "Alan Ball is trying to make vampires an analogy for gay people." Fucking no! (As Clayton put it, "Apparently gay people can only eat one kind of food, and as soon as we synthesized it they all appeared.") The aspects of True Blood that are references to a particular kind of gay American experience--having to go to another state to get married, "God hates fangs"--are actually the sign of Alan Ball's refusal to a)produce some really basic second-grade narrative of gay rights, or b)produce fiction that is exactly like the fiction produced by straight people. He just kind of throws it in there because it's a part of our life and it's kind of funny to apply it to vampires. People who try to interpret the gay=vampire analogy literally are just people who think that any reference to minority experience has to be super heavy and super sincere. That's not true, and it's othering; and more importantly, it's just boring.

15 October, 2010

(weird hobgoblin song)



I know you don't want me here
I know you don't want me here

I am the hobgoblin
of little minds
I am the hobgoblin
of your life

You were prepared then I showed up
I just waltzed in while you were all cleaned up

I am the hobgoblin
of little hearts
the kind that last a few hours before
falling apart

'Cause they know they're not wanted here
They know they're not wanted here

You patched up the holes in the ceiling
we came through the floor
You patched up the cracks in the universe
we found one more

You looked me up, you scoped me out
You read up on me and found out what I'm all about

You'll turn around one night
and slump in defeat
we're racing toward you
on a hundred centipede feet

I know you, you little shit, I fucking know you
you piece of shit, I fucking know you, you little freak
I know you don't want me here, I know you don't want me around
you blocked off the whole sky and I came in up from the ground

[a/n: I just developed this whole concept last summer; I feel like I shouldn't even put it on the Internet but it's just...not really fair that I should have to feel that way. I mean, how is this really more "hateful" than what we live with.]

about med stuff

(I feel really bad because I kind of assumed that someone who was on medications didn't want to be on them. What I ended up saying as a result was really disrespectful. I keep wanting to write them a long email explaining my personal med-context, to explain why I had that reaction, but if I do that it will seem like I'm trying to justify what I said, which I don't want to do because I know it wasn't okay. But after I decided not to write the email, I still wanted to write about my context.)

I was just put on a lot of stuff really fast when I was 15-16 and I was sort of...well, if I understand right I don't know if I got any kind of official diagnosis (I love that you need a diagnosis for accommodations but not for medication) but I guess the psychiatrist told my mom I had depression and hallucinations. (You can ask me if I've ever had either depression or hallucinations. The answer is no.) I was put on antipsychotics and waited to "get better." Instead I felt very physically uncomfortable, so I was put on Parkinson's medication too.

If I understand correctly I was taken to the psychiatrist originally because I was "cycling" which was my family's way of saying that when I was upset or stuck on an idea I would talk very repetitively about it in a way that my family found to be hard to take. It was thought by my family that this might mean I had a mood disorder. (Without comment, can I just say that I was already diagnosed with ASD this whole time.)

A few months later I had been cutting myself for I think pretty standard reasons of not knowing how else to connect/communicate to people, but I wasn't comfortable telling the psychiatrist this because I barely knew him. So he told my mom I was cutting myself for "stimulation" because I couldn't focus, and I was put on Adderall.

It's hard for me to even talk about the Adderall Times because putting a person with ASD on speed is just a horrible, stupid thing to do. The thing is that I knew I shouldn't be on it. But I was just too young to tell the truth. I had such a good time skipping class and hiding in the school library making lists and transcribing songs, so I would lie and say it was helping me with school. Besides, whenever I went off it all I could think about was different ways I could possibly die, so I always found a way to get back on. (Briefly during Christmas break when I was sixteen, I was taken off Adderall and put on Prozac, but I was just so dulled out. For some reason it didn't occur to anyone that maybe I was depressed/obsessed with death because I was on antipsychotics for no reason.)

Eventually the Adderall didn't even make me feel so good anymore and I was taken to a different psychiatrist who put me on Wellbutrin and I felt good again for a little while. This psychiatrist kind of thought I should go off some of this stuff though. And my family ended up deciding I should go off it all, because I had lost so much weight. But I had already done a lot of damage to my grades and my social life because of my complete tweaking out on Adderall all year.

After that, I've always refused to take any medication at all. It's difficult to even convince me to take cold medication. I'd rather spend the day lying down than take painkillers when I have cramps.

Last spring when I was having a lot of anxiety and dissociation problems, my mom really wanted me to go on anti-anxiety meds because apparently Temple Grandin is on them (I know, who could say no to Temple Grandin?). I very much didn't want to go on medication, but I was worried about myself, so I asked if I could see the second psychiatrist I had seen in high school, the one who helped me go off everything. I just remembered that I had really liked him and that he said I seemed like I had ASD (which I appreciated since people were always telling me I obviously didn't).

My mom and I had a lot of conflict driving to and from the appointment because I was saying that I didn't want to be on medication. It's not really worth describing but she basically implied that it was a waste for me to want to go talk to this guy just because I liked him as a psychologist, when I didn't want to be on anything. When I talked to him, he himself was fine with me not wanting to be on meds, but I had to fight tooth and nail with my mom to get her to stop trying to convince me to take meds, and as usual ended up feeling that I was a bad daughter because of my refusal to take them.

Recently, a person with ASD was telling me this funny story about when they were in high school and were on a lot of medications, but didn't want to be on any. The person managed to trick their doctor into taking them off some of their medications, to the chagrin of their parents. The tone in which this story was given and received was very "fuck yeah autism!" and for the next few days I kept thinking of this story, how funny and cute it was. What an awesome kid.

Then something changed and I realized it's not a funny story at all. It's a fucking horrible story. Why should any child have to do that?

I mean, the fact that I thought it was funny is something I like about myself. It is kind of funny and cool when we can resist other people's attempts to assert control over our brains. But also...what the FUCK? A developmental disability is not an automatic reason to be on medication but it seems to work out that way in some people's minds.

And this is why I was a jerk to someone the other day because when they mentioned their medication I was like "you don't have to take that you know! Lots of people have had bad experiences on it," but I didn't realize that this person has had kind of an opposite experience with people saying, "You don't need to be on medication," when the person actually wants to be on it. And I am really really sorry for what I said because I want Autistic people to be able to get what they ask for, and not get what they don't ask for, and that's all.

14 October, 2010

some complaints about being same-sex-attracted and not adapting well

(totally switched into my old anti-"queer culture" whining mode while writing this, and I apologize tenfold, I really am better now in this area at least. But I'm just posting this without reading it over because if I don't I will never post anything like it at all.)

I guess this is probably bad, but I'm not making an It Gets Better video because I'm not better.

I was working on a long post about this, since August, but it never really solidified.

When I was in high school, someone who wasn't my friend said this to my (secret, closeted) friend, who then told me: "Everyone could see there was something different about Amanda, and then when they found out she was gay, they had an answer."

When I was in high school, the word dyke or lesbian was a way to easily quantify all the things about me that didn't seem right. When I was in high school I felt very alone.

When I was in ninth and tenth grade, I actually brought all this on myself by not denying that I was gay or bisexual, and presenting in a masculine way. I felt that this was an important thing to do because other kids needed to see that queer people were just regular people. The problem with this idea is, in hindsight, obvious: I am not a regular person. Being openly queer in a heteronormative environment is a noble thing to do, but maybe not if you have anxiety about pretty much everything and have trouble talking to people.

A lot of my coming-out process happened when I was on a lot of medication and overwhelmed by the relationships I was in. By the time I was in eleventh grade, I was more able to clearly see what was going on, and I knew that I'd made a mistake by not being closeted. My school was very small, some people were genuinely afraid to be friends with me in case someone said they were having sex with me, and I wasn't a person who could charm my way out of this stigma. But my school wasn't violently homophobic and I feel like a more normal person could have made a difference. It would have to be a person who fit in every way, except one.

I think this is something that's always been hard for me to conceptualize--I've been in situations that other people would have been able to handle, but I haven't been. I feel like there's an attitude of, "It's not that bad for queer people to be under a little more pressure, if it's an amount of pressure that a normal person can handle, if they have nothing else on their plate."

At my college being same-sex-attracted is a non-issue; I remember the first time I told someone at college I was gay, and how hard that was for me. When I was in high school, I had huge problems saying the word and wouldn't be able to finish sentences if they contained it. In the first semester or two of college, I felt afraid of hugging my female friends or even sitting close to them while watching TV. I don't feel that way anymore. I don't feel separate from my friends because I am not straight. And that is a really big thing that means a lot to me, but it's all I'd be able to say in an "it gets better" video, and on paper, it doesn't sound that great.

I'm incel (don't know this word very well, and if it's associated with a subculture of assholes I take back my identification). I've never had a serious relationship with anyone.

I have always wanted to get married and have a big family (big by liberal not conservative standards, so 3-5 kids). But I have never really thought this will happen. For a while I used to think that I might end up marrying one of my male friends and raising kids together, but I'm no longer okay with that prospect; it would just make me too depressed.

Even though my school is ssa-positive, most of the people at my school are straight just like most of the people in the world. I have enough friends that I never feel lonely, but I don't belong to a group of friends (partly because I don't like groups), and I know very few ssa people because I don't have stereotypical queer interests.

A few years ago I posted on a lesbian advice forum saying I was depressed and stressed because I wanted to believe I would someday get married and have kids, but that I had never been in a relationship and didn't think I ever would be. People responded telling me that if I was on a date with a girl, I shouldn't tell her I wanted to have kids, because she would think I was creepy. One person went to my livejournal, saw where I went to school, and told me that my school wasn't any place to complain about and that I should "stop whining." She provided a list of various social groups and activities that would help me to meet "dykes," including eating in a co-op (which would mean being organized enough to eat at the same time every day, taking up a lot of executive function cooking and cleaning, and constantly interacting with a large group of people I didn't know).

I try not to think about any of this.

I used to have a political problem with the way other ssa people behaved. Whenever I thought about it I got so upset that I didn't know what to do. The way I saw it, there were two kinds of ssa people:

1. "gay" people (such as people involved in the HRC) who were very normal and wanted to have normal jobs and normal families. They didn't think much about trans people, non-homosexual sexual minorities, or anyone who wasn't normal.

2. "queer" people (such as a lot of people at my school) who were very into not being normal, playing rugby, performance art, co-ops, and so on. Many of them identified as trans but didn't seem to understand that some trans people actually take hormones and get surgery and are poor, and are not students at a liberal arts college who change their pronouns every week.

(Part of the focus of #2 arose because my only good lesbian friend, and one of my only non-straight-and-cis friends, was a person who was transitioning in college and had before transitioning fit squarely into the category of "very serious person who likes obscure music, old movies, and complaining." This was not such a bad personality for a straight guy, but it just added to the awkwardness she already felt whenever she tried to go to any kind of trans-related group or event at school, since most of the people were female-assigned and also just acted super "queer"--i.e. running around being spontaneous and talking about how we just need to break down all the labels and categories and let people be themselves, man! [Seriously, once I asked a very annoying queer-identified guy, who had previously been a pretty cool gay-identified guy who hated queers, but I think they stole his brain or something, "Well, what do you actually think we should be doing if everything 'gay' people are doing is so racist and classist and normative?" to which he replied that "trans issues are important, like we shouldn't have male and female bathrooms," at which point I couldn't take it anymore and said "Well what about fucking HEALTH CARE COVERAGE FOR TRANSITION" and he said he didn't really know what he thought we should be doing but we'd discuss it later and I should read Mattilda Bernstein Sycamore.]

Anyway, it was just pretty annoying for my friend and me, and we used to kind of feed into each other, and one time a queer feminist girl called out my friend in a filmmaking class for making a film about a female character when [the queer feminist thought] my friend wasn't a woman. [The person wasn't intentionally being transphobic--my friend was still using her birth name at the time and maybe still looked ambiguous--but I still think it's not okay to say something as harsh as what she said to my friend, on the basis of the assumption that someone isn't a woman.])

I just got really upset because I still felt alone/depressed about my future as an ssa person, and I also could see that trans people were in genuine financial/physical danger, but I felt like no one cared about just Making Things Better For Everyone. They wanted to either make things better for a small group of normal people, or go totally abstract and just "queer everything" and "break down all the categories and walls," which meant fuck all in the short term for real people.

I felt weird because I wanted to get married but I wasn't normal and I felt like "gay" people wanted to help normal people get married and "queer" people were anti-marriage so neither one included me.

For quite a while when I was nineteen and twenty I insisted on being referred to only as "homosexual" and "same-sex-attracted" because I didn't want to be associated with any cultural groups. A straight friend-of-a-friend referred to me as queer, and was a bit surprised when I spat out, "I'm not queer, I'm gay." In the past year I have started calling myself queer just because I like the word and I don't really give a fuck about how alienated I feel from most people who identify with it.

The only reason I stopped being so upset about being ssa was just because in the last year I started getting into Autistic/disabled stuff and I actually feel like I share the values and am included and not ignored because I'm too weird or not radical enough. So now I feel like I can actually work on stuff that's important, by working on disability stuff, and not feel like I'm alone in what I care about.

But when I go back to thinking about being ssa, I never feel better.

12 October, 2010

"it's social model vs. medical model NOT mild vs. severe disability" transcript

Hey, okay, so I just wanted to say something because I keep reading a lot of flamewars, which is probably a stupid thing for me to do 'cause it just makes me annoyed, but I just ended up feeling like if someone just came out and said this then people wouldn't be so annoying to each other on the Internet.

So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.

Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."

And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.

Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.

And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.

And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"

Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."

Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."

So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.

So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.

And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.

10 October, 2010

I refuse to feel bad

As Pete Campbell once said, "I refuse to feel bad." What an awesome thing to say! I love Pete Campbell! However, I guess he kind of should have felt bad, right, in that specific situation. Right? I still don't know what we were supposed to think.

The act of refusing to feel bad is very powerful. Especially for me.

I think this is partly the case because I sometimes feel bad about things that other people don't feel bad about, and vice versa. So forcing myself to feel bad because I know that someone else feels bad, combined with a reluctance to express that I feel bad, becomes a way of denying my own experience.

It is also the case that I grew up with someone who, to put it mildly, had a lot of feelings. By the time I officially decided this wasn't my fault, I was old enough to vote and almost old enough to buy alcohol. Obviously I cry, and sometimes people I love cry and my reaction isn't defensiveness. However, there is a certain type of angry crying which I've now come to see as a weapon, and when someone starts angry-crying at me, it makes me want to disengage as fast as I can from what is going on.

This is very mixed up in politics with me because I think a lot of opposition to disability rights/anti-ableism is expressed in the form of angry crying, or something that looks pretty similar. "Shut up! Disability is so horrible! It doesn't matter if you're disabled and I'm not, you should listen to me because I'm crying!" (Sorry to be such a bitch, but admit it: you know what I mean.)

Refusing to feel bad can go hand in hand with trying to feel good. An example of this is meeting someone with a quote unquote "significant" disability and actually getting to know them and see how they feel about things. Getting to know someone is a lot of fun and I would absolutely recommend it every time over reading a parent or professional's negative description of what a disability is like. Even in cases where the person is in tremendous pain, their life will still be more complicated than "this disability is bad and you should feel bad."

The problem though is that it's not that easy for me to say, "Well, I don't feel bad about disability (mine or someone else's), and if someone else thinks I should, then fuck them," because, you know, some people who think I should are people in my quote unquote real life, like family members and friends. And since I've started refusing to feel bad (a condition which developed between the ages of twenty and twenty-one-and-a-half, more or less), I have made people angry-cry by telling them that I think they're being offensive and that they're hurting my feelings (often about disability stuff, but sometimes about other stuff).

At this point, I sort of start to get bogged down, because I know that writing this blog is kind of a special interest. Even though some stuff that I write here is about my and other people's experiences, in a straightforward way, lots of other posts just consist of me poring over pop culture or really tiny inconsistencies in language and identity preferences and blah blah blah. And I haven't always been into this stuff.

So I mean--should I be able to separate the part of me that wants to say these things from the part of me that is close with those people? It's weird because I haven't always wanted to say these things, or felt able to say them, and also because if I have a history with someone that involves fuckups on both our parts (more mine, for sure, with some of the people in question) it's not a situation where I can just be like "oh they suck, they're just refusing to acknowledge their privilege. This is boring, I give up." They don't suck--they're a real person.

Maybe I suck.

Maybe I'm just being an asshole and this is just like getting in a fight with someone and making them cry because they don't like a TV show that I really like. Is it like that? I don't think it is. At the same time, when it comes down to it I often don't refuse to feel bad. I often feel really bad. But intellectually, I still don't think I was wrong, but I feel like I would be a bad person if I didn't pretend to think I was wrong so the other person wouldn't be upset anymore.

And so on and such forth.

09 October, 2010

Translucent characters

Recently I was reading a story I'd been assigned for class. The story was about a man who had recently experienced trauma and had begun thinking and behaving differently as a result. In one scene, the man badly cuts himself while making dinner for himself and his wife, and starts kind of stimming out on the visual experience of it (I'm trying to describe this in a way that's not triggering). The wife comes home and the man tells her not to worry because dinner isn't ruined; it will just be late. The fact that he got cut won't mess up their evening. His wife is very upset, apparently by his overly calm and spaced-out reaction to his injury. The story is in close third person, so the narration is echoing the man's thoughts and feelings about his injury.

I liked this story; I liked the man, and I enjoyed the tension between his cheerful feelings and what I understood (that his wife was upset by his behavior). However, I realized that this kind of dramatic irony could almost be seen as belonging to a particular way of writing about characters with disabilities and illnesses that affect their reactions and perception.

I admit that my super intense dislike of The Curious Incident of the Dog in the Night-time is a little bit unfair. My biggest problem with it is the way people react to it and think that they've become educated about autism by reading it, and I know that Mark Haddon didn't intend for that to happen and even resents it when the book is framed that way. However, it occurred to me that I have another complaint: part of what makes the book respected is this use of disability for dramatic irony. The blurb of the book says, "[H]erein lies the key to the brilliance of Mark Haddon’s choice of narrator: The most wrenching of emotional moments are chronicled by a boy who cannot fathom emotion."

I don't really think that ASD people can't fathom emotion, and despite my problems with the book I think that Christopher actually does have emotions and has some awareness of other people's emotions. So first off the person who wrote the blurb is just describing what they think autism is, not what the character of Christopher is actually like. But never mind.

The point is that this is the whole dramatic irony thing where the author and the reader are sort of treating Christopher like a wall that they can pass secret messages through. Christopher doesn't understand why his dad is so emotionally unstable, but we (the reader) are supposed to. There's also the scene where Christopher throws up because he's upset but he doesn't actually say he's upset (if I remember correctly). And so on. Lots of emotions happen, and Christopher either doesn't get what is going on, or chooses not to state what is being felt. From what I recall of his character, I think it's arguable that Christopher is aware of at least his own emotions, but chooses not to describe them because he doesn't want to. However, this isn't how the person who wrote the blurb takes it, and the same is true for many many people who write reviews of the book.

The idea is that it's clever/poignant to see emotions through the eyes of a character who doesn't seem to notice them. This is one type of Translucent Disabled Character Irony. Another type is humor; as one review says, "Though Christopher insists, 'This will not be a funny book. I cannot tell jokes because I do not understand them,' the novel brims with touching, ironic humor." There are passages in the book that Haddon sets up to contain information that is supposed to be unintentionally funny. For example, Christopher might write that he said something baldly offensive, and then write that his school aide or his father told him to be careful who he says that to.

The third type of Translucent Disabled Character Irony is about disability itself. An example is the story I read about the traumatized man. The man thought that he was behaving normally, but the reader could tell that he wasn't. Through the act of reading the story, the reader learns about the point-of-view character's disability, even though the character either thinks they are not disabled, or does not realize they are giving away their disability through their narration or their thoughts. This is the kind of TDCI that bothers me the most, although it's also the kind that readers seem to think is the most clever.

I guess that the first two kinds of TDCI--emotion and humor--are also about disability at the same time, since the fact that the TDC doesn't understand the emotion or humor also allows the reader to pick up on the TDC's disability.

Now, I'm obviously not trying to say that I think Translucent Disabled Character Irony is inherently wrong. Translucent Character Irony is a very striking and effective device (Translucent Child Character Irony is very common, and although it can be really troped and annoying, it can also be fun). There are probably at least a few touches of Translucent Character Irony in any work of fiction worth reading that is in first person or close third person--if there aren't, then the main character should probably be diagnosed as a Mary Sue for being so ridiculously clever and aware of everything. Everyone has a different point of view; everyone is so locked into their own experience that they sometimes don't notice how other people are feeling, how they differ from other people, the fact that a situation they're experiencing as serious is actually kind of funny. Having a reader pick up on things the point-of-view character doesn't is probably a sign of good writing.

But I do think there's a point where it is happening too much. Rather than being something that happens occasionally, Translucent Character Irony can become almost the defining feature of the work (as in The Curious Incident)--and this isn't a bad writing decision per se, but I think it's a very common way of writing about people with developmental disabilities and certain mental illnesses. If you keep writing about a minority group in the same way, it becomes offensive. Especially because it's kind of patronizing and othering.

It promotes a tendency to think "oh, how interesting" when encountering a disabled person; to observe someone instead of listening to their words; or even to see the content of what they are saying as being important only because of the insight it provides into their disability. I think there's lots of interesting fiction to be written about people with DDs and mental illnesses, and ASD in particular, but I think that it doesn't have to be fiction where the reader is so detached from the disabled/ill character and is observing their strangeness. A story about such a character can be interesting, and even be disability-centric if you want, without being ironic at the character's expense.

(This is one reason I love The Girl with the Dragon Tattoo--there are very few times when Stieg Larsson is conversing with the reader over Lisbeth's head. Sometimes Lisbeth has thoughts and reactions that most readers probably wouldn't share, but it doesn't come off as TDCI for some reason, maybe because Lisbeth picks up on so many things.)

06 October, 2010

watching Huge AND writing a paper

This is seriously like the best TV show I've ever seen. Like it's too bad it was canceled and everything, but I can't believe it was ever on TV.

LOVE Alistair especially when he was pretending to be a cat. But he's also just very dear to me because of the whole trope of queer and gender-variant characters always being really "sassy" and brave...I almost feel like it's a form of homophobia, this assumption that we can take care of ourselves, even as children/teenagers, so don't worry about supporting us. I love that he is very guileless (seriously my fictional diagnostics fingers are twitching) and is a person you feel protective of. [eta: oh man when he was saying he couldn't shower with the other guys my heart just completely fell out of my chest and started dripping goo all over the floor. Poor kid.]

Really love Becca, wish she was a real person and a little bit older and went to my school. She clearly is possibly gay right? "Well, I don't know, I don't know any lesbians my age." What kind of straight person thinks about something like that when asked if someone seems gay?

my only complaint: [just kidding, was wrong. show is best show.]

05 October, 2010

some more passing thoughts

I wrote a long thing in a notebook to be a possible intro to my passing project if I do it...then decided I kind of don't want to have a big intro, I can just include my experiences mixed in anonymously with everyone else's. But anyway.

I talked about passing. I said it is often conventionally associated with people of color passing for white. I said that trans men and women talk about "passing," but it's not exactly the same since you are actually trying to be perceived as the correct gender, not the wrong one. But then I thought, if you are passing for cis that is kind of "passing as something you're not" because being cis implies stuff about your history and physiology, but nonetheless you are misleading people about small things in order to get them to recognize a big, true thing: your correct gender.

But then I thought about how passing as straight had once felt a little bit like this for me. When I was [one of] the only visible queer kid[s] in my school, everything else about me disappeared, so the person I was being perceived as wasn't me at all. When I started going into new environments and intentionally keeping quiet or lying about being SSA, I felt like myself again. People again noticed the details of who I was.

And also, the way normal people talk about people with ASD often deprives us of agency and an inner life. It is assumed that for example people wouldn't stim or monologue if they just understood that it is not normal. The way a person walks or talks is analyzed; the abnormalities are pointed out with no thought of how a person who walks or talks that way might feel as they are going about their life. Things are said, like, "The 'active and odd' type...I worked with an autistic boy and when I said hello how are you, he talked about his special interests. He wanted to engage with me--that's active--but he did so in an abnormal fashion--that's odd." So our choices and personalities just become symptoms.

I am canny. And I am careful to the point of having significant anxiety problems. So for a long time, I felt that being seen as ASD would actually erase who I really am. The fact that I have green hair wouldn't be seen as a choice or even a covering mechanism, but a sign that I maybe am not good at dyeing my hair and made a mistake, or don't understand what is a normal way for a girl to present herself. And I felt that stylized and strange things I do because I have too much anxiety to do things the normal way, or just don't know how, would be seen as thoughtless, and just "behaviors" that show what people like me are like.

The other week, I wrote an email to a kid I don't know super well, but would like to know better. He knows I have ASD because of a workshop we were in together where I wrote about it. My email said something like, "Dear ___, I would like to be friends with you, and when we ate together the other week it was very nice, but now when I see you I feel like you avoid talking to me for very long, do you think I'm weird? Sincerely Amanda. (This is a joke.)"

Now, the reason I said "this is a joke" is because I sometimes tend to try to initiate friendships in ways that seem very abrupt (although this kid has done some friendship initiation towards me, such as sitting with me in the dining hall and stuff) and to avoid being self-conscious, and because I'm not going to agonize over phrasing something in a super normal way, I will instead intentionally phrase something in a very twee, stylized, overdramatic way. It's the Manic Pixie Dream Girl act, a little bit, but I've dropped a lot of that I'm glad to say, but I still have an instinct to approach people in the twee stylized way, and you know, it works for me, I don't really regret it.

But anyway, then as I was going to send it I thought "But he knows I have ASD. So maybe he'll just think that I really write like that all the time and don't know any other way to write, and that I genuinely think he doesn't like me because the last time we said hi to each other we didn't have a conversation." So I added "This is a joke." And a while later he wrote back expressing positive/friendship sentiments (we'll see how this goes, but I don't think it was different than the sort of thing normal people say to other normal people when they're thinking of becoming friends) but also wrote "I don't know what you mean about it being a joke" and then I wrote back explaining.

Anyway. Um, I would like my passing project to be kind of a collage of voices, and maybe some actual collaging with images too around the words. But then I feel concerned that I will almost be taking away people's agency and using them as examples, just like I'm afraid of professionals, or people who are "interested in autism," doing to me. For example, if someone writes a very low-key, long, almost cheerfully listless description of some experience, but at one point buried in all that is the sentence, "The way she was acting was making me want to kill myself." If I take that sentence because it's striking and use it as a headline, isn't that a way of kind of erasing who the person really is?

then I got excited

after I made that post and didn't do my homework, because I was thinking how cool it would be to do a project collecting writing/talking from people with ASD who pass or have passed

some areas of LOOK HOW SUPER COOL THIS WOULD BE:

insecurities about stimming/gait etc. Or other things, like speech, or intensity, that people think will give them away
opting out of initiating things, getting too close to people, going into certain environments, because of a fear of getting into a situation where you won't be able to pass
covering rather than/in addition to passing. Passing to avoid covering.
being put in a position of assumed normalcy in relation to people with disabilities and/or mental illnesses--special ed teacher or staff person, student in a psych class, psychiatrist, parent of a disabled child, sibling of a more "visibly" disabled or ill person
intersections of unread ASD with other identities that aren't always read, and/or that the person consciously hides or covers (including ethnicity, class, being same-sex-attracted or trans, other illnesses or disabilities)
intersections of unread ASD with identities that are obvious to everyone (basically everything I just listed can also be "visible")
people who feel disconnected/unreal because of passing, or feel their relationships are damaged by their passing
people who are not read as ASD, but are read in some other negative way instead
decisions to stop passing, how they are made and their affects. Or, people who stop passing and feel they can't help it or don't really have a choice
having people tell you that your ASD isn't real or significant, because of the way you look or speak

anything else?

stuff to say in class

(I used to be joking when I said that and now I'm not, which is an exciting change.)

of course more of an effort needs to be made to include girls with ASD in studies at an equal rate to boys and study differences in presentation and even do all-girls studies

however, I think this is not just because we need to study what ASD is like in girls, but because we need to question commonly accepted values about how to "treat" children with ASD.

the focus is generally not just on communication and other objective skills, but on normalization of behavior, but not a ton of analysis is done on why for example preventing neologisms, preventing stimming, and training eye contact are supposed to be inherently good. But when we think about the fact that (anecdotal but very consistent evidence from professionals, parents, and people with ASD) women and girls with ASD are much more likely to pass for non-disabled, or at least be less apparently/stereotypically ASD than their male counterparts...we actually already have a bunch of passing/semi-passing ASD people to study. We can actually look at these people and see what their quality of life is.

Again from anecdotal but consistent evidence, women with ASD are more likely than men with ASD to have severe anxiety problems. I think at least one study showed that we are less likely to be married. And when you actually think about this stuff logically and not from the standard "non-disabled people>>>>everyone else forever" perspective, it makes perfect sense. Behavior is not who you really are. Focusing super hard on behaving like someone else can cause anxiety and exhaustion. Being impaired and having other people not notice that/make allowances for it, because you pass so well, can also suck. If you are behaving like someone else, you may number one fall into the uncanny valley, and number two be unable to feel things very deeply/experience real connection.

I mean, to me this is common sense and people should already be questioning "non-disabled people>>>>everyone else forever," but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.

04 October, 2010

I just want to say this because it makes me so angry and I feel like not enough people have said it: disability services at college are fucking super, incredibly ableist. There was an FWD/Forward post last week where people started talking about this in the comments. But I just sometimes get so pissed off I can't stop thinking about it.

It's fucked up to have for example an entrance for wheelchair users that the wheelchair user has to actually make a phone call to have opened. (The other day I saw an elevator in the art building at school which said exactly that--there was a little phone next to it that said "dial [this number] on this phone if you need to use the elevator.") I think that most people who work in disability services would understand this is fucked up. But that's exactly what disability services are like, if not worse.

People have to prove they're disabled. They often have to have documentation stating that they are disabled that's less than five years old, or sometimes even less than one year old. For one thing this costs money, but for another thing, a lot of people with disabilities like ASD and ADHD don't find it super easy to run around getting a lot of documentation together.

We also don't find it easy to do things like apply for accommodation for every individual test we take, which is often a rule. On the FWD/Forward thread, a person with ASD and Tourette's was talking about how she basically never gets accommodation for her tests because she can't do all the things they require her to do in order to get accommodation.

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they're just a shitty person who wants to get a leg up on everyone else?

Second of all, explain this kind of bullshit (this particular bullshit is from here): Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally. In addition, the student's documentation must support the need for a service or accommodation in order for it to be approved.

Even though the person is paying to go to school and the disability services office and the professors are paid to help the person learn, the student must: find the proper individuals, have conversations, request accommodation (even if this kind of stuff is hard), find all their paperwork, bring it in, and most importantly initiate everything. Even if all this thought and travel is physically or emotionally wearing on the student. Even if the student just can't do this stuff at all and it never happens, because of the nature of the disability. Who cares.

I feel like there's almost a sense of glee. I feel bitter saying that, but that's how it feels: "come on you little wuss, it's not our responsibility to help you, it's your responsibility to jump through a billion hoops in order to be worthy of our help. And if you're too disorganized or tired or anxious to do that stuff, well, fuck you, we only want to help disabled people who have certain kinds of disabilities that don't affect their brains or their energy level very much. Special, magic, just-like-everyone-else disabled people (actually, we only want to help disabled people who are better than everyone else). So go fuck yourself."

03 October, 2010

so, while I'm being gooey on the Internet, who wants to make a line drawing of one of these carvings so I can get a tattoo of it?





(I'm not sure which one I want.)

I know this is pretty obnoxious, but it occurred to me that people can be pretty nice/strange online so it might be worth a try, also the only people who ever comment here are in fact the very two people who I already know can draw and wanted to ask, but I was like maybe that's obnoxious, so let's do it passive-aggressive style instead.

To explain why this is a GREAT tattoo, I will make a list:

1. these carvings were made by Christians back in the third century when Christianity was still awesome. I identify as Christian without the last 1700 years.

2. Jonah obviously represents me being a JACKASS and never standing up for myself or other disabled people and how God will send a whale to eat me if I keep on like this (but if I'm lucky it will be a whale depicted by a third-century Christian who doesn't know what a whale looks like, awesome).

ETA: I actually don't really want this tattoo anymore so if you are one of the people I was trying to harass into drawing me a picture, don't worry about it. You have your life back.

02 October, 2010

Why God won't heal amputees

(I already posted this on my tumblr, so I apologize for anyone reading it twice. I just figured since I wrote two tumblr posts on it I could combine them into one regular-length post.)

It’s funny because I think why won’t God heal amputees? is a really important question but not for the same reason the people at the website think it is.

(First of all you’re assuming that the only possible God is a God who answers prayer at least some of the time. This is obviously not true--and in fact I don’t believe in “the power of prayer” in the mainstream Christian sense, so I am not arguing completely from my own point of view--but I’ll let it go for now.)

1. Presumably you don’t think that if someone prays for something that’s obviously really bad, the fact that it doesn’t come true proves the nonexistence of God. I think most people who believe in the power of prayer wouldn’t be swayed by someone saying, “I prayed to God for my ex-boyfriend to be in a car accident and die, but it didn’t happen!”

2. Disability is part of Creation. God won’t heal amputees, and won’t heal many other PWDs, because without disability life would be really stupid and boring. Just because someone thinks they should be non-disabled doesn’t mean they should be, anymore than someone who thinks their ex-boyfriend should die in a car accident is actually right.

The End.

some other responses: The Thinker
Wheelie Catholic (who also points out how offensive the whole website is to PWDs)

And, also:

when I was a kid, I used to have this book Always Wear Clean Underwear, which I think my parents got me because they were atheists but I was really interested in religion which they weren’t super happy about, but I think they got accustomed to it and realized they should try to make me be the kind of religious person that atheists can still get along with. So they gave me this book which was written by a rabbi and mentioned God and praying a little bit, but was mostly just a funny book about how to be a good person.

There was one part in the book where he described hell as being a place where a bunch of hungry people are sitting around a table piled high with delicious food, but when they reach out and pick up the food, their arms won’t bring it back to their mouths. Then he described heaven the same way. Since you are not eleven years old, I bet you can figure out the surprise ending: in heaven, everyone feeds each other. I know this is cheesy but I like it.

I think this also applies to our regular, pre-afterlife life, and can pretty easily be related to the question that atheists think is going to really stump religious people: “But are you saying that GOD CREATED DISABLED PEOPLE?? HOW COULD THAT POSSIBLY BE TRUE??”

Okay guys, let’s think about this. Disability is socially constructed. “Socially constructed” doesn’t mean that disability isn’t real. It’s super real. But it’s real because people who look and act different are discriminated against, and people who have different needs don’t have those needs met.

You, yourself, going around saying, “but look, if God really is so great, why did He create people who can’t do all the stuff that I think people should be able to do? Why doesn’t He cure them?”—you yourself have the power to cure all the disabilities in the world, by treating disabled people as equals and trying to help everyone get what they need, and encouraging everyone you know to do the same. You could actually be curing disabled people right now, but instead you’re making a dumb website where you try to use a cliched idea of disabled people to prove a point.

01 October, 2010

love post

a picture of me, a 21-year-old woman wearing a t-shirt and sweatshirt, holding up a notebook opened to a page that says: There are a lot of cynical things to say about this kind of love and they're all true

the notebook page now says: Nonetheless, I love you

Even if I don't even know you're here or you never comment and probably even if we had a fight I still love you

because we are part of each other

This isn't about your diagnosis or lack thereof. I was going to say you either know what I mean or you don't, but the truth is that maybe you think you are unqualified to belong

to anything but I swear if you think that way then we already belong to each other if you want us to.

If you are not expressing yourself somehow online I hope you will and I'm interested in what you have to say, and if you already are, thank you. I'm incredibly grateful for you.

You could just start talking to me on your own. This isn't charity although I believe in charity. I want to know you. I've learned that I can't help and support everyone, but I still want to try, and, barring that, I still want to know everyone.

If you don't contact me, and you never communicate with me about this stuff (or just can't), that doesn't make any difference to how much I love you. I love you because you are. And I think we're all brave, even when we think we are lazy and weak and a waste of space because we can't do the things we think we should be able to do. Regards, AWV. My email is A W F dot vivian at gmail dot com and if you are using a screenreader and it can't read that I apologize. Comment on another post and tell me this and I'll figure out how to write my email better.
hi fitz-clementine:
I want to quote/write about this in my epic social skills post. Is that okay with you and your friend?