I'M SOMEWHERE ELSE

purple ears

2012-01-25T11:10:00.000-05:00

I think autism is a real thing, mostly because I seem to have a lot in common with a lot of other people I know who were diagnosed with autism, especially people who were diagnosed when they were kids. So I guess what I mean is that I think there is a group of people who have a similar disability and often get the same label. But because most professional opinion on autism doesn’t really relate to what my actual disability is like, I kind of don’t think autism is a real thing, at the same time.

It’s kind of like if most gay people had purple ears--not necessarily their whole life, but at some point, maybe when they were a kid. Some gay people would have purple ears their whole lives though. Some gay people would only have purple ears for a minute and it would be hidden under their hair. A few gay people wouldn’t have purple ears ever.

I can see why professionals might get very focused on studying why some people have purple ears, and even why some people might find it important to their identity, and I can even imagine going around and using “purple ears” as a synonym for being gay, especially if being gay took a long time to explain--but this doesn’t mean that purple ears are actually the important thing that’s going on. Being gay is what’s actually going on, and it’s what people with purple ears have in common that’s more permanent and important than the color of our ears.

(Purple ears equals diagnosis of autism or maybe more specifically the kind of surface attributes that lead someone to get diagnosed with autism.)

2012-01-17T09:54:00.004-05:00

I was just thinking about when my dad will touch me in ways I don't like to be touched like putting his arm around me or putting his arm on my back. Without having a clearly defined rubric, I guess my deal is that with most people, what I want from physical contact is something brief--really tight hug and let go, squeeze hand and let go. I don't like to have to go a long time with someone's arm around me, especially if they are bigger than me.

Sometimes I have just sat in movies having my enjoyment of the movie dampened by my dad's arm on my back. Sometimes I have managed to come up with excuses to move away supposedly to do something else but really just to get away from contact. And sometimes especially lately I just immediately move away, stiffen to an extent that my dad can't ignore, pull my shoulders in away from his arm, or shrug him off. When I do those things, it's obvious that I am saying NO.

What I think is interesting is that when I do things that say NO, a)my dad looks offended, and b)my mom tells me, "That was mean."

Even though I am disabled and a woman and those are two groups of people who aren't supposed to say no to touch, I don't really think this happens because I am disabled or a woman, I think it's really normal. But it's kind of messed up and I think people should think more about touch!

Should someone have to accept touch that they don't want, especially for a long period of time? Is it mean to display nonverbally that you want someone to stop touching you? I don't think so.

The Loud Hands Project

2012-01-11T15:48:00.006-05:00

hi guys, it's time for the Loud Hands Blog Tour! are you ready?

The Loud Hands Project is a project by the Autistic Self-Advocacy Network, which is being organized by Julia from Just Stimming. You might have seen the video:

(The YouTube page for the video has a visual transcript in the description section. If you can watch the video but don't want to watch it with sound, it still makes sense with the sound off.)

Julia describes Loud Hands as a transmedia project. Transmedia is a word I was not familiar with, but according to Google it means "storytelling across multiple forms of media," which sounds pretty good. The idea as far as I can simplify it is to communicate the pride of Autistic people and support Autistic people in communicating their own experiences, but there are other facets too and Julia describes her aims much more clearly on the fundraising page for the project.

Loud Hands is trying to raise $10,000 for the launch of its website and its first anthology (if you're thinking of submitting to the anthology, you can learn about that here). $7,500 has already been donated, but they still need to make their goal by March 15. As soon as my theoretical job starts I plan on donating a LOT, and if you support the project and can spare the money, I hope you'll consider donating as well. Even if you are only able to donate a few dollars, it still makes a difference.

If you're not able to donate but you have autism, I still really hope that you will think about contributing to the Loud Hands website, and to this or future Loud Hands anthologies. Whether or not you have autism, please try and support the project by telling other people about it who might be able to contribute money or communication.

No matter what you do, please try and live with loud hands at all times.

Love,

Amanda

(and loud feet)

2012-01-10T00:33:00.004-05:00

Every few days I think about camp and it starts taking my head apart.

Not because of the stuff relating to ableism and me being disabled, but just because I am not going back there, and can't ever go back there.

This man is an amazing person, who I had the incredible luck of knowing for two weeks, and then for two weeks again.

I will send him letters, because letters are important to him, but I know that he won't associate the name on the letter with me, even if someone tells him the name of the person it is from.

One time he made a drawing and when other staff asked if it was for Amanda, he said no like he was offended, and then he gave it to me and looked at them as if to explain. He's not necessarily an easy person. He is himself. A lot of things make him angry and it's easy for him to feel that people don't care about him if they don't talk to him or write him letters.

I don't understand his speech, so there's a lot I don't know about him. I did understand when he told me his mother was dead.

I used to have the idea of sending him letters with photos in them, but I feel like it's too late.

2012-01-07T09:11:00.004-05:00

I got some really good spam, and although I am removing them from their comment threads I thought you might enjoy them.

I am posting this can be due to the fact I would want to thank my good friends for getting close to when stuff had been truly bad. I have played the online games especially the wow for a long time and I have some good suggestions for everyone to get the best.

Being authorized of or obtaining the elements that people want is linked to not becoming anything that people are; so, developing up, we bury component of ourselves.

How can we get the best RS Gold,through the internet or the players in the game? Can we Buy RS Gold with cheap price or other ways else?

what about individuals who had been taught that becoming an indistinguishable was the 1st factor they should certainly want? How can we Buy Cheapest WOW Gold through the internet?

I can't inform you what form of peace of thoughts that is. Even once the reality they inform isn't a fairly or pleasant one.

Touching somebody else isn't a God-given appropriate so for people who touch somebody plus they proceed their entire body aside from you--what can we do when we have many boring free time? How about try to get access to the online games? When we talk about the game, we need to talk about the WOW Gold. As the WOW is the world's most famous online game, all of us knows that we have to get the Cheap RS Gold to save money.

2012-01-05T11:09:00.006-05:00

This used to be one of my favorite songs when I was little (which is kind of creepy in retrospect, but whatever) and it occurred to me that it has some relation to things I write about in this blog. Like I've said I think sex is a pretty good microcosm of all the feelings and relationships people try to define and make rules for, and one of the best examples of how much those rules can hurt people. So, have fun, while I work on my post about how everyone is severely disabled in their own mind.

asked my daddy when I was thirteen
"Daddy, can you tell me what love really means"
his eyes went glossy not a word was said
he poured another beer and his face turned red

asked my mother, she acted the same
she never looked up, she seemed so ashamed
asked my teacher, he reached for the cane
he said "don't mention that subject again"

read about love, I read it in a magazine
read about love, cosmo and seventeen
read about love, in the back of hustler, hustler, hustler

so I know what makes girls sigh
and I know why girls cry
so don't tell me I don't understand
what makes a woman and what makes a man
I've never been to heaven but at least I've read about love

my big brother told me when I was fourteen
"it's time I showed you what love really means
girls like kissing and romance too
but a boy's got to know what a man's got to do"

he gave me a book, the cover was plain
written by a doctor with a German name
it had glossy pictures, serious stuff
I read it seven times then I knew it well enough

read about love, now I've got you
read about love, where I want you
read about love, I've got you on the test-bed, test-bed, test-bed

so why don't you moan and sigh
and why do you sit there and cry
I do everything I'm supposed to do
if something's wrong it must be you
I know the ways of a woman, I've read about love

when I touch you there it's supposed to feel nice
that's what it said in reader's advice
I've never been to heaven but at least I've read about love

tl;dr

2012-01-02T21:51:00.007-05:00

I know this isn't an interesting post, it's probably my 100th post on the subject. I try to avoid even reading about this stuff because no one cares. But I quit tumblr, so sometimes I have to say boring emotional stuff on my regular blog.

1. It's so dumb to think that listening to PWD aside from your own kid means that you have to obey and agree with everything they say! PWD don't even all have the same life experiences or opinions. Why don't you just treat people with disabilities like people with disabilities who might have something to say that is important and, even if they don't, don't deserve to be personally attacked?

"But I didn't personally attack anyone!"

Oh yeah, I've heard that before...too bad Ability Statements Are a Personal Attack! There's no way you would be into it if I started making assumptions about your kid or your life so why do you think disabled people should be all calm about you doing the same to us?

No disabled person wants a bunch of parents following them around and obsessing over their lives and worshipping them. Well some people do, but they're famous and they try not to talk politics because it might distract from the worship. You're not talking to those people, you're talking mostly to some really young/not-famous people with disabilities who don't want to profit from our disabilities but just want to be able to talk about them. We don't want you to agree with everything we say, we just want you to stop being disrespectful and acting like we're not even here.

This is especially annoying when used as an origin story, like, "I used to believe everything that disabled people on the Internet said, until someone told me that one person wasn't diagnosed with the disability they said they were diagnosed with, so now I don't believe ANY disabled people on the Internet." If you legit were believing everything all disabled people said AND prioritizing what they said over your own common sense and experience with your kid--instead of just listening to them like you would listen to any normal person, and thinking about what they said critically--well, why were you doing that? Why do we have to be always right or always wrong?

We're just OTHER PEOPLE, like you.

2. If I see the word high-functioning used one more time by someone who is claiming to be evenhanded...okay I'll probably have the same reaction as usual. Super big sigh, bad mood, usually avoiding a conversation with that person. That word just feels like they are stepping on other people and not even noticing or seeing why it's important.

3. It's not that weird that people from a certain minority group involved in advocacy would not be representative of everyone in their group. I remember someone (non-disabled obviously) making a comparison between gay advocates and Autistic advocates, and hastening to add, "except, the difference is not all Autistic people can do this kind of advocacy."

Yeah, okay, what about gay people who don't have the money or the mobility or the cognitive or emotional ability to participate in a certain kind of advocacy? Since we're always on the subject, what about gay people who have multiple severe disabilities? What about gay people who smear feces?

I would like to see mainstream gay advocates acknowledging gay disabled people more, obviously, but what I'm saying is I don't think you automatically have the right to discredit advocates just because they aren't a perfect microcosm of the community they are supporting. For example, people who can use the Internet independently, and read and type fluently, are more likely to be involved in blogging or having conversations on blogs. People who can use the Internet independently were more likely to find out about The Loud Hands Project and submit clips of themselves for the video. (According to one guy we all dress like "hipsters," and therefore don't have real autism. I'm still trying to figure out what people with real autism dress like? Probably guayabera shirts.)

I think it sucks that many kinds of anti-ableist advocacy aren't accessible to a lot of disabled people and I would like to change that. (I know that one of the goals of The Loud Hands Project is to do exactly that.) But I don't think, given the current lack of support, there is anything surprising when most disabled people who have anti-ableism blogs or attend meetings of disability rights organizations have certain abilities that make it easier (or at least possible) for them to do those things without support. It also doesn't mean they aren't severely affected in other areas, but no one cares about that, blogging is ~the most important thing in the world, ever.

4. Finally, just stop saying high-functioning! Again! It makes it impossible to talk to you because my head is going to DROWN in how annoying you are.

Especially if your kid is also "high-functioning" or could be classified that way, but for some reason you're neglecting to mention that. Maybe because you secretly sense what a shitty word that is to describe someone who's having a really difficult time! Or, maybe because you don't want to lose points in the argument. Possibly both! No one knows.

Like I said, this is probably the 100th post I've written on this subject and I swear to God, I don't think a single parent has ever read something like this and changed their mind and realized they were treating other people badly. Seriously. 100 posts. All bouncing straight back into my own mind.

If you have known me for a while, you probably remember my 2010 campaign to acquire a severe developmental disability by throwing myself in front of a FedEx truck before my 22nd birthday. Since I've missed the legal cutoff I would now have to throw myself a bit harder, or drink Drano, to get out the high-functioning deal. I know you think this is really insensitive and insulting to you and your kid, but try and think about WHY I would feel like that is a smart or reasonable thing to do. Because I really, really did feel that way.

A friend of mine recently described himself as "too disabled to work, not disabled enough to get disability benefits." If you think that kind of life situation is best described as "functioning," then you are a shit. Seriously. When I look at you, I don't see a person. I see a turd.

Of course I know you don't see anything when you look at me either!

last chapter of a very long story

2011-12-28T03:49:00.004-05:00

Dear L,

I need to tell you something. I never completed the staff review form this summer because I was afraid that it would be obvious who I was even if I mailed it in anonymously, and that if I said what I thought, I would not be asked to return to camp. This winter, when I realized that I had not been asked to return anyway, I decided that I would probably write to you and tell you this.

I don't expect you to answer this but I do ask that you read it carefully and think about what I have to say, because I think that camp will be a safer and better place if you read it. I know you're busy with work and preparing for the summer, and that you may not get to it right away. But I have faith that you will read it. Thank you.

As you may or may not know, I was born with a disability. When I was growing up, I never went to a camp like [name of camp] and there were not many social groups for kids with my disability. When I came to camp in 2010, it was the first time that I was able to meet and get to know people with disabilities and this is one of the reasons that camp has been so important to me. Both summers, I told some other counselors that I am disabled and they were supportive, but I generally do not like to tell employers this for fear that they will assume I am not able to perform the functions of a job because of my disability.

In the first session of camp in 2011, a fellow counselor told me that he considered our young campers to be "brats who needed discipline," and that when his campers were annoying him, he wished he could hit them. He was angry with the campers for doing things like becoming upset, crying, being mad at him, or not responding to commands. I tried to defend the campers, but he said that he didn't see why I liked them so much because they were "just brats," and implied that I was bad at my job because I didn't share his views on how to discipline campers. (Through other staff, I later found out that this counselor would do things like bringing food to his cabin that the campers were not allowed to have, and eating it in front of them.)

After having this type of conversation with him a few times, I felt so scared by him that I no longer wanted to be around him. Given the attitudes he expressed toward people with disabilities, I didn't feel safe telling this other counselor that I am disabled. We had become friends during orientation, and he didn't understand that (from my perspective) we could no longer be friends. He expected that I would still want to spend time with him during breaks, but I now tried to avoid him, though I tried not to offend him or make it obvious what I was doing.

I found the situation so upsetting and awkward that I didn't know what to do. I strongly considered quitting camp and leaving immediately. It was hard to stay, but I chose to stay because I cared about my campers and because of the effects on the workload of other staff if I were to suddenly quit. When other staff would have conversations about this counselor, I would participate in them because I was so upset by the situation. I know that this wasn't a good course of action and I'm sorry for talking about another counselor when he wasn't there. It was wrong.

But, when I was able to talk to an authority figure about what happened, I felt like I was in more trouble than the person who had expressed a wish to be violent toward kids with disabilities. I had actually imagined that this counselor might be fired, but my concerns were not even acknowledged, and I did not get the impression that he was ever told his behavior was wrong. Instead, I was told that I shouldn't have "talked about him behind his back," as if it was just an issue of the two of us not getting along. (In fact, we had been friends up to that point. I didn't have a personal problem with him.) I was also told that I should have confronted him directly about why I was upset--but as a person with a disability, I don't feel safe confronting someone who acts so hateful about people with disabilities, and besides, I had already tried to talk to him about it several times.

This was a tough experience that I was really disappointed by, but I got over it and had a great time at camp. I worked hard and dealt with some challenging situations, like being a float in session three and being given responsibility of a very high-need camper in the middle of session four, when D quit. I think that I dealt with these challenges well; even when I was stressed, I never let it affect my positive relationship with my campers. I think this is the most important part of working as support staff, especially with vulnerable populations.

However, I felt like I was seen as a troublemaker after the incident in first session. Several times I was told off for supposedly doing things that I hadn't done, like smoking in camp buildings and disregarding the safety of campers. These things were not true, but the conversations about them always occurred in a public place and were very brief, so I rarely got a chance to explain. I didn't want to arrange a meeting with you to explain why I felt I was being held responsible for things that didn't happen, because it seemed like making a big deal out of nothing. But I knew that you were probably forming a bad impression of me, and I wasn't surprised to learn that I am no longer wanted at camp. I'm incredibly sad to get confirmation, but I am not surprised.

I know I am responsible for what happened because I should have addressed this while it was going on. I can't change it now. But it would mean a lot to me if you would keep my comments in mind when dealing with other staff and campers in future summers.

Thank you so much for reading all of this.

Sincerely,

Amanda

2011-12-26T02:09:00.004-05:00

okay so this is something I wonder about all the time.

whenever I read any mainstream media article about verbal people with autism, the people with autism are so rude! well not necessarily rude, but just really really insensitive to other people's feelings or to being polite.

obviously there are people with and without autism who sometimes make me go, "you're so fucking rude/insensitive!" and I'm sure some people think the same about me, but it's never to the degree portrayed in these articles. like when I'm going to hang out with a friend and I take FOREVER to get ready and delay the whole thing. not nice. or when someone goes, "it's nice to see you, you're not the person I was most looking forward to seeing, but it is nice." (yes I know someone who said this) or even just when you make an effort to do something for someone and they don't say thank you. or when someone doesn't ask how you are doing and only talks about themselves. or interrupts all the time.

stuff happens! people are rude. maybe us more for the sake of argument, but not on the dramatic level portrayed in these newspaper/magazine articles. those articles never look like me or anyone I know and I used to always be like, damn my autism is so fake! all my friends' autism is so fake!

but sometimes I wonder if it just the point of view of the article and I'm wondering if anyone else thinks that might be true. could I make people in my life sound like that if I wanted to?

the long version

2011-12-23T04:00:00.002-05:00

I was a very small boy when I received the bite. My parents tried everything but there is no cure.

Dumbledore said that as long as we took certain precautions, there was no reason I shouldn’t come to school. Once a month I was smuggled out of the castle, into this place, to transform. The tree was placed at the tunnel mouth to stop anyone coming across me while I was dangerous.

I was separated from humans to bite so I bit and scratched myself instead. The villagers heard the noise and the screaming and thought they were hearing particularly violent spirits.

But I sucked it up because that’s what you do, and I was happier than I’d ever been in my life, because I had three friends.

Interestingly when I got older they still didn’t trust me and thought I was a spy.

Probably because it was really cool that I wasn’t human, when they could make jokes about it and use our friendship as an excuse to do something rebellious and exciting. They used to ask me to share my painkillers and my other meds. The tranquilizers were strong because they were made for a werewolf and Sirius especially loved to get out of his mind. It was also cool when they figured out how to use me to scare someone they didn’t like who then hated me for the rest of our lives.

It was pretty cool how I was so intimidated by them, too, since I’d never had friends before and everything.

This didn’t mean that I could be trusted to protect their family. I’m a fucking werewolf, guys. Clearly I eat faces.

Awesome.

2011-12-18T19:29:00.003-05:00

Also I know this seems self-indulgent and more suited for tumblr but a while ago I took the Meyers-Briggs personality test and I did not get one of the stereotypical autism results. (I think it's INTJ? I got ISFJ.) It might just be one of those things where you interpret the results to fit you, like with horoscopes, but the description of my type seemed to fit me really well.

I'm not sure why, but I found that really comforting. I think if you have a mental disability you get used to hearing yourself described in a way that doesn't fit you at all. Well, at least I do. It's been really cool to realize that I can identify as having autism without having to try to change my personality or values to fit a stereotype of what that is supposed to be. I feel like I've only recently come around to be able to do that.

pink-collar jobs and autism

2011-12-18T17:54:00.007-05:00

I take it really hard when I see someone defending the ability of A/autistic people to work or more generally "contribute to society" (not an idea I'm fond of) by saying things like:

*we can hyperfocus on something and do it really well.
*we might seem rude but if we work in a geeky environment, like if we are video game programmers, this won't matter! And if we don't our coworkers can learn to understand and forgive our rudeness because we do a good job.
*we may have more needs in some areas but we have fewer needs in other areas because we don't party/spend time on Facebook/care about fashion/play sports/something else stereotypically non-autistic. (It's too bad because the blog where I read this had a good point about "special needs" not always meaning "more needs" but I thought it wasn't helpful to rely on stereotypes this way.)
*we might have special interests in science or art that lead to us being amazingly skilled in those areas./We might have "splinter skills" or "savant skills."

People with and without autism say these things and they mean well. But I don't like it, not just because I am offended by stereotypes or something, but because it is personally threatening to me.

Every job I've ever held, and probably every job I've ever even applied for or been interested in, has been a pink-collar job.

I feel a little weird using the term pink-collar because it was coined for kind of a critical use--it refers to jobs usually done by women and the reason these jobs are in their own category is because they tend to be lower-paid than traditionally masculine jobs that have the same workload and educational requirements. But pink-collar is the only term I can find that easily covers the sort of jobs I am thinking of.

Some examples of pink-collar jobs are hairdressing, nursing, teaching, and waitressing. These jobs are a bit different from the kinds of jobs people are usually thinking of when they talk about how Autistic people can succeed in the workplace, because a lot of the job is about interacting with people other than coworkers. These don't all apply for every pink-collar job, but some of the requirements for a pink-collar job might be:

*treating people courteously and being friendly
*not hurting or abusing people
*being well-suited to working with kids
*remaining polite when someone gets mad at you
*being able to put someone else's well-being ahead of your own
*doing everything you can to fulfill someone's request

It is probably apparent that none of these qualities are stereotypically Autistic. I even see comments to that effect thrown around without much thought--that people with autism aren't good at customer service, or that we don't like kids. I'm not just trying to be all, "I'm good at customer service and I like kids, your argument is invalid!" but to point out that when even "positive" descriptions of Autistic people's work imply that we can't do certain kinds of work, it makes it harder for us to get jobs, or be open about our disability if we do get those jobs.

I know I'm not a super rare exception in a world of Autistic people who want to be electrical engineers, because I know lots of Autistic people, especially women, who want to work in special education. Special ed is a really good example of a field where, if you were applying for a job, you would want to convince your potential employer that you had all the qualities on that list. Which is to say that if your employer has been fed stereotypes of what Autistic people are like and what kind of work we can do, telling them you have autism could really hurt your chances of getting the job.

I know some people who will be open about their autism when applying for a job. I would never, ever do this. Right now I am looking for a job in healthcare and it scares me a lot to know that my disability label is associated with being violent, rude, and uncaring. I really love having this blog because I always wanted to write something that people liked and got something out of, but I regularly consider deleting it because it would be so easy for anyone who googles me to find out I have autism.

Basically what I'm trying to say is that even though my disability doesn't make me better at doing pink-collar jobs, I don't think it makes me worse at them, and I would like my suitability for them to be judged by who I am as a person instead of my disability label. I feel that even when people try to talk positively about what Autistic people can do in the workplace, they often ignore the fact that some Autistic people don't want to work in an office or in a stereotypically un-social field like science. So they don't defend us against some of the stereotypes about what we can and can't do, and sometimes they even reinforce those stereotypes by implying we are best at certain kinds of work.

I'd also like to point out that while my family was able to pay for me to attend college and I was (barely) able to finish my degree, a lot of people with autism don't have the option of the white-collar jobs we're supposed to be so good at. If you spend all your breath arguing that we can be engineers or architects, that doesn't help people who don't have the money or don't have the ability to get the education to do those kinds of jobs.

(NB that this post might not be relevant to people with autism who can't work, and some of it might be relevant to people with other disabilities like mood and psychotic disorders and intellectual disabilities.)

2011-12-16T14:39:00.003-05:00

I also think you could write an entire gender studies textbook about the dynamics of ABA.

I mean, quite a lot of the time it boils down to a bunch of young, idealistic women trying to control the bodies of little boys--and getting bizarrely affronted when the boys resist.

2011-12-16T13:54:00.003-05:00

I am working on a post about how much I hate this (not this particular post, but the whole discussion), but I got sidetracked by thinking about a particular intersection of sexism and ableism.

I don't think I'm the only person to have witnessed this series of events:

A young woman in a staff role encounters a developmentally disabled guy who "accidentally" touches her breasts, jokes about her being a stripper, jerks off in front of her, etc.

The woman is upset. She talks to a more experienced staff person, or to her supervisor, and is politely told to get over it.

Don't be upset, it's funny. He can't hurt you.

Don't be mad at him, feel sorry for him because he doesn't know any better.

When I talk about this I don't mean to imply that men with developmental disabilities sexually harass women more than other men. I'm also not sure that people's reactions are that different when it comes down to it. The staff/disabled power dynamic is just stacked on top of the idea that men should probably get to do whatever they want, so that both people are getting a shitty consolation prize for not having power.

I mean, what you tell a woman in this situation basically boils down to, "Why not be a good sport and let him have this one thing? At least you're not disabled."

Elephant

2011-12-11T11:58:00.002-05:00

I had a dream I went to Hogwarts except instead of being for magic it was for disabled people. All my RL and Internet disabled friends were there and I felt anxious about who to hang out with.

We were each supposed to put on a little skit about our experience with our disability. I forgot to prepare my skit but I did at the last minute. My friend Gabe (who isn't disabled, but this wasn't a very well-constructed dream) was in the skit.

In my skit I am an elephant wearing a trunk made out of blue construction paper. Gabe tells me it's awful for me to have a trunk, so the next time I see him I'm hiding the trunk under a huge coat.

"Why are you hiding your face under that coat? What's wrong with you?"

"I'm an elephant."

"Don't be stupid! You're not an elephant. You don't have a trunk."

I take my trunk out from under my coat. Gabe stares at me.

"What the fuck is wrong with your face?"

I timidly stumble offstage. Everyone likes my skit.

discretion

2011-12-09T20:32:00.004-05:00

I think this is my #1 song right now, Clayton very sweetly tried to get David Bazan to play it when we saw him on my birthday but I guess he doesn't play it with his current band. Feeling weird about blogging but probably won't make any real decisions until I become employed (this is probably not the best time in American history to set "when I become employed" as a prerequisite for doing something, but oh well).

having no idea that his youngest son was dead
the farmer and his sweet young wife slept soundly in his bed
in the shadow of the mountain as the cattle hung their heads

grazing only feet from where the broken body lay
and would lay undiscovered for another several days
when the farmer would find vultures at their banquet in the hay

the killer traveled eastward in a golden brown sedan
weighing his most recent deviation from the plan
counting down the hours till the sun came up again

hired to hit the farmer by the farmer's asshole son
had not yet decided between poison or a gun
suddenly he realized he would not use either one

You're (Still) Going To Die In There: boring uses of clueless sensitivity

2011-12-06T12:57:00.006-05:00

“If you like the jar with the baby’s leg, wait until you see the jar holding the baby’s head. If one actress with Down syndrome doesn’t provide enough Tod Browning-style otherness for you, don’t worry — there are two. If the line about snorting cocaine off a high school girl’s nipples doesn’t do it for you, maybe the scene of the sobbing naked man masturbating will.”

—New York Times American Horror Story review

One of these things is not like the others!

It’s perfectly reasonable for critics to take issue with portrayals of disabled characters that use them as a genre trope or try to shock the audience with the disabled character’s appearance. Lots of horror movies and TV shows do this.

(While we’re on the subject can I just show you my favorite horror DVD cover of all time:

LOLOL. Terrifying.)

However, I really wish critics, in their rush to be sensitive about disability issues, would actually take a step back and look at what they’re saying. Which in this case, seems to boil down to the idea that a person with Down Syndrome is the same as a jar with part of a dead baby in it. And that an actor with a disability that affects their appearance would only be cast in a TV show or movie as a circus freak.

To be fair, I don’t really think this critic would be against an actor with Down Syndrome appearing in some kind of inspirational/depressing movie about the family of someone with a disability. I don’t think they would consider that a “freakish” performance. But in addition to the fact that you shouldn’t assume all disabled characters in the horror genre are functioning as freaks, I’m also not sure why critics are quick to jump all over the “insensitivity” of characters like Addie in AHS, when they don’t seem especially plugged in to notice what is wrong about more “tasteful” portrayals of disability—which in my opinion can be equally offensive.

I definitely don’t speak for all disabled people when I say this, but I prefer horror tropes of disability to tasteful tropes. Disabled horror characters have style—rusty, terrifying wheelchairs and braces more suited for steampunk conventions than actually helping someone get around. Their unsteady gait isn’t depressing, it stops you in your tracks with fear. If they’re bad, they kill people, and if they’re good, they can help you with their psychic powers. They’re not people to underestimate.

Of course they’re usually shitty characters, but as shitty characters go, I love them a lot. And because their very nature means they are not “tasteful,” they often become more human and likable than the disabled characters in a straight-faced portrayal of disability.

I wish that critics would wait to talk about disability until they’re ready to actually care about it and engage with it genuinely. The more I see people complain about Addie on AHS—in exactly the same way, and for some reason never mentioning other disabled characters on the show, like she’s the agreed-upon thing that’s offensive—the more it looks like they’re doing it to earn some kind of merit badge. “I’m sensitive to portrayals of disability in pop culture!” No, you’re not. Because if you were, you would care about things like whether disabled characters are unique, have realistic problems, are charismatic, are POV characters, and don’t tragically die at the end of the movie. Your primary focus wouldn’t be whether you can lazily compare Jamie Brewer to the actors in Freaks—which happens to be a great movie despite not being “tasteful” in the slightest.

As long as so few disabled characters are good, it’s really hard for them to be notably bad, and there’s something so clueless about condemning Addie Langdon when there are so many worse characters running around in this and other genres. In the end it doesn’t matter if the Burned-Face Man chokes you with a pillow in the attic, or a Lifetime mom ends your suffering in a more wholesome way—you’re going to die in there.

important lifestyle change!

2011-12-05T17:25:00.006-05:00

I've decided to stop trying to have an even skin tone

just like I don't have to pretend to be a genius because I have bad brains, I also don't have to go over my face with a fine-toothed metaphorical comb, especially because I have rosacea, and hiding that will take my entire life.

if you have the kind of stunned/stumbling mind that I have, having to have an even skin tone before you are officially "dressed" means that getting dressed never happens and you float around in pajamas for really long periods of time. people need to be dressed. at least I do. it does take a long time and sometimes it's like, "because of the amount of time it took to get dressed, I'm not going to do anything today anyway." but my lifestyle change is totally chopping some minutes off the getting dressed torture!

I'd also like to point out as an aside how horrible it is when you do spend your entire life putting on makeup and then later in the day it starts to look kind of like a mask, this is awful, it makes me feel awful, I am 23.

new lifestyle:

cover up anything on my face that looks like the exit wound from a bullet
lipstick/lipgloss
now ready to put on clothes

note to myself for future annoying pop culture posts

2011-12-05T11:52:00.005-05:00

tv shows I've adopted this fall and my feelings about disability on those shows:

the vampire diaries (n/a, just as tvd is n/a for anything that relates to minorities in any way, except for the hilarious black witches thing which is as bizarre as it is partly because of the show's refusal to acknowledge that anything bad ever happened to black people in America)
china, il (n/a it's brad neely)
my little pony friendship is magic (really great)
the fades (good--not a big thing but they cast actors with disabilities)
bedlam (worst thing EVER, as I explained here)
game of thrones (awesome)
american horror story (awesome, this might take some explaining, but I'm sticking to my guns)

(I also finished united states of tara and six feet under, both of which I can imagine having things to say about, but I've been watching both shows for so long I don't think I ever will)

Hercules

2011-12-03T11:40:00.006-05:00

sorry for spamming you guys with this, but I figured it would be entertaining to at least one person. I kind of think both these papers are bullshit--I mean they were pass/fail and I had a lot of stuff going on so I wrote about themes that are easy for me to find in anything. But I do think the fact that these themes are so easy to find indicates a lot about how deep in the values are.

HERCULES--ABILITY

Supernatural conditions are sometimes portrayed as being analogous to disabilities; for example, telepathy in True Blood or lycanthropy in the Harry Potter books. It’s not necessary that the analogously “disabled” character lack an ability that other people have, as long as he or she has the wrong abilities compared to other people. Hercules is easily interpreted as part of the magic-as-disability tradition, as his super strength impairs his ability to live normally and fit in with his community.

Hercules can sometimes use his super strength to do chores for his adoptive parents but, perhaps because he lives in a world set up for humans with an ordinary level of strength, he often expends too much strength and ends up breaking buildings and injuring people, which causes him to be unpopular in his community, which labels him a “freak.” Although his adoptive parents love Hercules, they come to accept that he doesn’t fit in their community and must journey elsewhere to be successful.

Hercules’s journey can be seen as a positive message for viewers with disabilities or other people who don’t match the standards of their community. As he moves into different environments and roles--training with Phil, performing heroic deeds in Thebes, partying on Mount Olympus as a god among gods--we see that Hercules, who was not good at anything in his parents’ town, can be good at everything when different things are expected of him. However, his clumsiness isn’t completely cured when he becomes a hero, and this is realistic. He also chooses an imperfect existence as a human over existence as a god, where he presumably wouldn’t have to deal with the issue of clumsiness--showing that if he has a life he’s proud of and happy with, he doesn’t mind not being good at everything.

Like many magic-as-disability works of fiction, Hercules fails to deliver a completely positive message about disability because the resolution of the “disabled” character’s problems is less than applicable to real life. Ultimately, a character with super strength can’t be a real disabled character for two reasons. First, super strength doesn’t resemble any real-life disability so it’s not as easy to identify Hercules as disabled, which limits his ability to be a role model for disabled kids or bring images of disabled people into the minds of non-disabled kids. (This isn’t necessarily the case for all “magical” disabilities; a magical illness, for example, can be easily read as resembling a real illness.) Second, Hercules finds a solution for his problems that’s nearly perfect, and steps into a new life where he’s universally admired. While it is important to show that someone who’s labelled a loser or a freak can be successful by different standards, Hercules’s tremendous success is somewhat problematic because it sets a standard viewers, not having superpowers, may not be able to aspire to or identify with.

Notably, the magic-as-disability aspects of the character are not at all present in the original myth. In the myth, Hercules/Heracles’s problems come from a fact that is completely excised from the movie; Hera, his father’s wife, is not his mother, and even though he lives with his mother and stepfather instead of on Olympus, Hera nonetheless hates him and causes him various problems. Although evil stepmothers are certainly acceptable in Disney movies, the portrayal of infidelity that would be required by an accurate adaptation of the myth would probably be considered inappropriate for a children’s movie. Therefore, the villain of Hercules’s story becomes Hades, who is not evil in classical mythology; and Hercules’s main motivation comes from within.

Protagonists who are unpopular, or who are initially perceived as “losers,” can be appealing in American movies, but don’t really fit with classical values, which had less of a focus on the individual. In the Disney movie, Hercules doesn’t want to be a hero for the sake of glory or other more classical values, but for more modern reasons, and ones that position him as a minority or an outcast in his community, in the same way as other Disney characters like Belle and Mulan.

cure in Disney movies

2011-12-03T10:54:00.004-05:00

I wrote this paper for an exco I took last term and I just found it when Mtthw inexplicably asked for me to repost the notes I took for the class. It is too long for tumblr, so have fun.

DISABILITY AND NORMALCY IN SLEEPING BEAUTY AND THE LITTLE MERMAID

There is often conflict between the disabled community and mainstream society about what is best for disabled people. Often, disabled people think that success involves putting someone in a situation where they can be as happy and functional as possible; while mainstream society thinks that success means altering someone until they appear “normal.” While actual disabled characters don’t usually appear in Disney movies (except for villains like Captain Hook), these kind of values can be read in the treatment of non-human characters who are different from humans or lack abilities that humans have.

An example of a non-human character who sends a positive message about disability is Tinkerbell in Peter Pan. She can’t talk, but this is never a problem, because everyone in Tinkerbell’s life has learned to understand the way she communicates. Even though she wasn’t created to make this point, Tinkerbell can nonetheless make the point to viewers that she doesn’t need to be altered to fit in with the other characters.

Some non-human characters who do alter themselves and attempt to be human are the three good fairies in Sleeping Beauty and Ariel in The Little Mermaid; and each character shows the problems inherent in attempting to be “normal” rather than aiming to be successful as yourself. Each of these characters is competent when she’s in her natural form and environment, but when expected to perform as humans, they are all lacking.

In their non-human form, the fairies are not as powerful as Maleficent, but they are the most powerful characters in the movie aside from her and it is almost solely through their actions that Aurora is saved from the curse. When they are human, they make one of the big mistakes of the narrative that allows Maleficent to find out where Aurora is. The mistake they make is not just because they are human, but precisely because they are fairies trying to be human who have realized they can’t pretend to be human any longer.

As humans, the fairies are portrayed as lacking either the cognitive abilities or the experience (if not both) to perform tasks like cooking, cleaning, and making clothes. In real life, a person who couldn’t cook or clean for herself wouldn’t be able to live without help, and adults who can’t live without help are often treated rather harshly; but in the case of the fairies, their inability to do these things doesn’t mean they’re seen as defective, but simply that they’re trying to be something they aren’t. Their lapse into using magic again, while it happens at an inconvenient time, is the natural result of putting themselves in an unnatural situation.

Therefore, Sleeping Beauty has a positive portrayal of its “disabled” characters. Their inability to perform normal tasks is humorous, and ultimately not a problem for them, because it is acceptable for them to live differently and rely on other skills to take care of themselves. Humanity is not a goal, but simply something they tried and failed, and then abandoned without seeing their failure as reflecting badly on them.

In The Little Mermaid, however, Ariel’s desire to be a human is a goal that, from the perspective of the movie, she has to achieve at all costs. It wouldn’t really be accurate to say that she desires Eric above all, because she is interested in humans from the beginning and seems to fall in love with him because he’s the first human she sees. While the fairies’ disguise as peasants doesn’t seem like something most viewers could relate to, Ariel’s longing for humanity is more comparable to the way real disabled people are expected to long for normalcy; it’s not just another way of being, it’s an inherently better life.

Objectively, Ariel’s life isn’t bad, but she sees it as inferior: “Flipping your fins you don’t get too far/Legs are required for jumping, dancing,” she sings, ignoring the speed and grace of her own movement. There’s nothing strange about a sheltered teenager being interested in people from another place, but it does become disturbing how Ariel dismisses her own body as nothing but an obstacle to human life, and that this is portrayed as not mere teenage restlessness, but a sensible outlook.

Ariel’s initial life as a human is also comparable to the life of a disabled person trying to be as normal as possible. In real life, a disabled person trying to function as a non-disabled person has to make sacrifices non-disabled people don’t have to make. As a human Ariel can no longer do what she did best as a mermaid (singing), and, most importantly, cannot communicate. (It’s interesting that her inability to communicate keeps Ariel from even being able to tell people that she used to be a mermaid. As is often expected to happen when disabled people are “cured,” she completely drops the identity she had before.)

The Little Mermaid had the potential to be a more unique story about a nonstandard character trying to be normal. In addition to losing her voice, the mermaid in the original story finds it incredibly painful to walk and dance, but does so anyway in order to be attractive to the prince; and she ultimately isn’t able to land the prince, partly because she has given up her ability to communicate so he doesn’t know that she’s the person who saved him. In the fairy tale, the mermaid’s attempt to be human is tragic.

Obviously, the Disney version of the story could not be tragic because that’s not how Disney movies are. But the story could have been given a happy ending in which Ariel went back to being a mermaid without losing her relationship or her zest for life. Instead, the Disney movie glosses over Ariel’s sacrifice, by making her only lose her voice instead of also being in pain; and in the end, she is magically cured of both her lack of humanity and the difficulties that a magical creature trying to be human would have (her voicelessness).

The Little Mermaid has often been identified as a problematic movie in terms of gender, because Ariel changes her body for a man. But it’s also problematic in terms of disability, because Ariel must change herself to a more normal form to realize her dreams. While in Sleeping Beauty, the fairies’ attempt to be human is an impetuous bad idea, it’s presented as the only way Ariel can be happy. Viewers are told not only a)having a normal body is worth the sacrifices, but b)don’t worry about that, because actually, switching from abnormal to normal will become easy and eventually have no drawbacks attached at all.

can diagnosis make you feel good?

2011-11-30T14:38:00.005-05:00

I have a dear friend who really wants to be diagnosed with ASD. I find this ridiculous. I feel kind of bad about it because I turn into the least supportive friend in the universe whenever the subject gets brought up.

My friend: I think it would be really helpful because then if it makes me feel like crying when someone talks loud, I wouldn't have to feel bad about that.

Me: (badly suppressed laugh)

My friend has a bunch of more specific and less stigmatized--therefore, way more useful--disability diagnoses. I'm like, what's wrong with those? The LD/MH ones more or less add up to ASD, except for the loudness thing, but get an SPD diagnosis if it's that important to you. (My friend isn't trying to access any services that are specifically for people with ASD.)

My friend: Well, I just think it would make more sense instead of me having all these different things.

Me: Well then you already know it makes sense.

My friend: I would feel better if I was officially diagnosed.

Me: Well, okay, but it's not going to feel that official because you're going to have to go to like ten doctors because you look too normal and have too many friends.

Blah blah blah. Am I a bitch? I guess I just think it's up to my friend whether he wants to feel like an asshole for being upset by loud noises, and not only is the purpose of a diagnosis not to make you not feel like an asshole, but in my experience it's pretty much the opposite.

A bunch of people on tumblr were talking about how professionals tend to "treat" people with ADHD basically by telling them to do things that are really hard for someone with ADHD to do. As far as I can tell the same goes for autism. Plenty of non-disabled people in my life, who understand that I have autism as a fact, can think of nothing more offensive than taking my word for it when I say, "this is REALLY hard for me" or "this is making me REALLY upset" or "could you do me a favor by doing this, which would help me do something the way I need to do it, because I can't do it the other way?"

Stock answers:

"Wait, why would that be hard?"

(thinks I am joking about being upset)

"I can't believe you would ask me to do that!"

"Well, why don't you just do this? Why not?"

Seriously guys. Autism, or whatever, is not a word that helps. Having a real disability does not in any way give you the right to feel like anything other than a bad person when you can't do something. It definitely doesn't give you the right to draw your own conclusions about what you need or what is the right way to react to a problem.

I admit that I am kind of a shit friend when it comes to this, because I hate everyone and I feel like the only thing you can do is feel okay yourself, because most people don't want you to feel okay.

why no one counts

2011-11-28T13:39:00.007-05:00

Something I've noticed: a person with a disability having a conversation about the value of people with disabilities (which you can call whatever you want, but usually something more tactful than "the value of people with disabilities") can never actually be disabled.

The reason this is true is pretty obvious!

Someone who is talking about how reasonable it is for a parent to not want a kid with a disability, or how it's wasteful for kids with disabilities to get the best possible education, or how they'd never date a person with a disability, isn't thinking of fully formed and complicated disabled people.

They're not saying it's reasonable not to want a blind kid who becomes an anarchist and can't go to a family gathering without getting in fights with your more conservative relatives. If they say the word blind, they're usually referring to a kind of blindness that doesn't actually exist--a kind that is not attached to a real person.

This is why people who believe things like that can care about you even if you are disabled. You actually are other stuff besides a disability floating in space, so you don't resemble their version of a disabled person.

So, you know, someone is talking about how super hard it is to have a kid with autism or Down Syndrome or CP and how much sense it makes for people not to want that. And you're like, "But I have autism, it makes me feel bad when you say that, aren't we friends?"

"Well, you have to admit your autism is different. I wouldn't mind having a kid like YOU."

Well, duh, because I wrote you letters, and you told me my hair color is uneven, and we eat Oreos together, you eating the cookie sides while I scrape out the paste with my teeth.

But you have to admit that the way you talk about disabled people, you never let them far enough in your mind to know if they would write you letters too.

if this doesn't make sense to you I'm way jealous

2011-11-27T00:53:00.007-05:00

(First: I want to say that I might look at this in two days and think all of it is totally wrong.)

As someone who has always found "tumblr social justice" to be at least semi-useful 100% of the time, and funny when it's not very useful, I'm finding myself getting a bit worn out by the idea of privilege.

I actually don't mean this the way people mean it when they criticize the idea of privilege or say it is too widely applied. (Rest your chops and write me an email, please.)

I think what's kind of bothering me is this enshrining of privilege--what's bothering me is actually the idea of criticizing people because they consider something to be an oppressed group/privileged group dichotomy that you don't think is serious.

Yes, it can get very silly.

But it just bothers me when people start drawing a line in the sand about what silliness is. And I totally get if people read this and think I'm ridiculous. But I feel like if some person has felt really erased or somehow less-than, or like she has less of a future, because of some fact about herself, and then she's like, "Wow, this is how it works! This is why I felt like that--this was what was supposed to be the difference between me and other people!" that's, like, really cool. It's pretty cool to start seeing a system or pattern in something that previously just sucked.

Now, going to the doctor and having the doctor assume you are having sex, when in fact you're asexual--for example--is not like having someone follow you down the street and threaten you because they think you are having sex with someone of the same sex. It's not as important or urgent an issue.

But I also think it sucks and is a real problem and I'm happy for any person who is able to think and talk about why it's a problem, and I'm hopeful for the work that person will do--because I think the world will be better when different kinds of people are accepted as real, valuable, and natural.

One of the most frequently mocked aspects of "tumblr social justice," especially the teenage kind, is the way "oppressed identities" are treated like these buttons you can collect. I'm not saying I don't smile a little bit when I see some kid on their tumblr describing themselves as "Queer! Bisexual! Manic! Depressed! Bipolar! Crazy!"--apparently using as many synonyms as possible to make their list of identities longer--but I also feel excited about the buttonlike aspect, because I find it cool that instead of being like, "well my bipolar isn't that severe, and I've never been fired from a job because they knew about my diagnosis, and I'm not a psych survivor, and mental illness isn't a real disability...so I'll just crawl back under this rock," this person can just be like, "cool! I'm in!" and start looking at the world from that perspective for a while, and maybe start to understand some of the things that have happened to them as being part of a constellation of things that happen to mentally ill people.

The way people treat stigmatized identities and the people who carry them is pretty miserable. I think buttony tumblr culture makes this something that people can kind of start thinking about--maybe kind of lazily and shallowly, but shit, they should be thinking about it. And the majority of people have some kind of stigmatized identity that they can think about.

The idea that discussion of "oppression" has to be really hardcore, and that marginalization/abuse/stigma/fear has to be at a certain level before that group of people can be officially considered oppressed, just seems really...well, I get and agree with where it's coming from, but I ultimately feel it makes this stuff WAY less accessible. Because feeling like privilege is this heavy thing that you can't possibly understand doesn't make people interested or passionate.

But privilege is a really deep and consistent part of our world, and I think it's easy to start to understand it.

some touch rules

2011-11-25T14:10:00.004-05:00

My New Years' resolution is to be really super rude if other people touch me in a way I don't want to be touched.

Here's the situation as I see it:

Touching someone in a way that makes them feel less than good isn't a favor to them that they should have to appreciate and act nice about. It's not the same as a present, where if they don't like it they have to thank you anyway.

Touching someone else isn't a God-given right so if you touch someone and they move their body away from you, you should not have the same reaction you would have if someone yanked a book away from you that you were trying to read. No one is being mean or denying you anything that you deserve.

I get that you might be confused because sometimes I let you touch me even after I was saying that it bothered me, but it is hard for me to say no because I believe a lot in compromising and being polite and making sacrifices to make other people comfortable. I probably stopped stopping you because I didn't want to have a fight or make you feel weird about the fact that you were trying to force physical contact on someone who didn't want it.

But ultimately I just don't think this is the same as compromising on what to eat for lunch. It's a person's body. You shouldn't want to touch someone who doesn't want to be touched. If it makes you feel bad that this is what you wanted and what you were doing, then you should say sorry because you were doing something bad, instead of wanting me to say sorry because I made you feel bad by pointing out what is going on.

So I've just officially decided to be a terrible person, when it comes to this one thing.

2011-11-10T21:57:00.006-05:00

in the weeks before my 22nd birthday all I could think about was trying to get a serious brain injury because of some convoluted thing in my head about how disabilities you acquire after age 22 aren't considered developmental and I was going to miss my chance to have a developmental disability that people actually believed was real.

I ended up just cutting off a lot of my hair instead of jumping in front of a truck like I kept thinking about doing. then I got suicidal for months and months.

anyway, the reason I am posting this is because I would like to thank my friends for being around when things were really bad. and because it's really cool how boring* my 23rd birthday is feeling in its approach. I'd like to direct anyone to the love post who has not seen it, because I feel that way now more than ever.

sorry this blog stopped being cool/smart. maybe someday again.

*(ETA: not boring anymore, pancho started the BLOG FOR MY BIRTHDAY and it's so good)

disabled staff person no. 03847101

2011-11-08T18:50:00.003-05:00

disabled staff person stuff is really weird

because I barely had a staff person.

I've had doctors and I guess therapists in the resource room when I was in middle school, but the truth is I don't really know what it is to have a staff person like some people do.

on the disabled vs. staff lines, I can't say exactly I have been on both sides.

as a staff person, I do sometimes feel scared. like this summer, when this guy kept saying disabled people who get upset need strict control and he wished he could hit them. and when I told my boss she told me I should have talked to him about why it upset me.

"it upsets me that you want to hit disabled people, because I'm disabled."

stuff lodges in me. I am not staff even though I'm staff. things happen and they stick in my throat.

other staff are like chameleons. if you're taught to be respectful to disabled people, you more or less are. if you're taught that "this is the real world" and you shouldn't ask them what they want because it takes time, you will enter THE REAL WORLD. and you talk like this:

"people with cerebral palsy are depressed and angry that someone has to do stuff for them, but fortunately these people have MR so they don't understand and they're happy."

staff person: "oh yeah, I guess that's true."

"I feel like some people talk to disabled people like they're children."

staff person: "yeah! they're just people and should be treated normally."

"he looks normal but you can see his elevator doesn't go all the way to the top."

staff person: "hahaha! that's such a funny way to say it!"

will the real staff person please stand up? probably not.

I'm not like this (I think)

cause I'm a real disabled person and I get to have weird conversations like this:

"I think it would be fun to work in a group home but I'd feel bad that people have to live there."

my aunt (who is in a care profession and was giving me advice on jobs): "well, for some people it might be more convenient. they chose to do it after all."

"actually, a lot of people aren't given the choice."

my dad: "amanda means the disabled people not staff who live at the group home. see, look how much she cares about the feelings of disabled people! isn't she caring?"

yeah, so caring. unable to enter THE REAL WORLD and see a bunch of objects or problems in the place of humans. unable to see these things that shimmer in and out of different meanings--are they cute? do we love them? do we respect them? do we think they'd be better off dead? are we too good for this job or is it inspiring?

but I am not a disabled person, I'm staff.

I'm not being bitter even though I am. I hate that some of my friends see me as the enemy sometimes because I am staff. I also think it's fair.

like, if it's really difficult for me to get a job because disability limits my options, and I get this job, and I don't report/identify abuse because I know they all think I'm weird and incompetent, and people won't believe me and I might lose my job and not get a reference

I still let abuse happen.

remember The School that I interned at, that I got my start blogging about? like, with the aversives and the anti-stimming and the crackdown on language that sounds too old or too young for your age. you'd better believe I kept my mouth shut at The School entirely and never told anyone there what I thought. it's probably been less than a year since I last used them as a reference.

other staff think I am a bad staff person. because I don't know what I'm doing. because I'm shy. because I don't have experience. because I'm scared of/intimidated by disabled people.

because I say:

"I'm sorry"

"wow I'm sorry, I spaced, I didn't realize what you had asked me to do"

"I'm sorry" (when someone has yelled at me)

"well, what do you want to do?"

to disabled people.

one time I called a disabled person by the wrong name, started to walk away, realized what I'd done and came back to apologize. "wow, you're so POLITE!" said the staff person.

I don't live in the real world. I don't live in the real world.

but I do.

all this niceness/incompetence means I find it almost impossible to speak up about anything. I love my people really hard and I'd like to pretend that love illuminates me and makes me brave, but that's a total lie. I can't even suggest to people that when a mobility impaired kid who can't talk starts trying to go somewhere, you should probably let him actually accomplish that instead of obstructing every single desire he slowly and painfully tries to act on.

this kid was pointing at the door, looking at me, and making noises. he never made noises. a very old lady pointed at me this weekend, in the nursing home. another lady said, "help me, get me away from that woman, I'm afraid of her, she's going to hurt me, I want to kick her in the ass, I want her to die."

my excuse is I didn't know that woman's name. also found it too easy to tell myself I was wrong. she was just tired. the stuff she was saying to old and disabled people, and the way she was handling their bodies...she was just tired.

anyway, I know that's what everyone else would say, if I said something.

I am not disabled.

I want to be. got mad at you because I make myself sick.

still kind of believe in doing good in bad places, that because I am not a chameleon I would be better suited to bad places than the rest of them are. also worried that life would become an endless supply of things stuck in my throat--this constant reminder--

I'll die in this room if you die in this room?

--that I both am disabled, and don't deserve to be.

2011-11-06T05:51:00.003-05:00

seriously will have the post someday. doing clinicals for my nurse aide class right now (=no sleep/depressed all the time).

pancho if you spend half the time STARTING A BLOG FOR MY BIRTHDAY that you spend having fights with people at other blogs, the BLOG FOR MY BIRTHDAY would already be here! don't forget your promise.

Autistics Speaking Day post 1/3-ish, do NOT link this, it is not done

2011-11-02T21:31:00.001-04:00

1

Today at Walgreens I got my TB test, and I also got a COUPON for $3 off on any purchase above $15. Just like Walgreens wanted me to I immediately forgot what I was doing and wandered around the store trying to find $15 worth of worthy stuff.

In the toy aisle was a $15 FASHION FLUTTERSHY:

This is probably the most torturous thing that could happen. That is my authentic cell phone picture of the FF and you can see that she really wanted to go home with me. Forever.

My purse is like this:

I was also carrying/fumbling with other stuff. There was no way that I could bring Fashion Fluttershy to, on, and from the bus without dropping her and letting her be hit by a car. I was forced to use my coupon on lipgloss, batteries, and hand sanitizer, which are almost the only things I ever buy. Really hate my life. Stuff is miserable.

This is the only notable thing that happened to me today and I swear to God, I used to have a part of myself that would feel worried and guilty upon experiencing it. You guys! WHERE'S THE AUTISM?

Probs I should be reminded that I have a disability whenever I do anything, or my disability is not real.

2

I don't think it's really surprising that I feel this way, because our society treats autism like some kind of super strict religion. Even people who think that autism is tragic still seem to think it's a lifestyle. It's just not the RIGHT lifestyle. Autism is characterized as "stealing" people because little kids are growing up with the wrong personality. It's basically like they're joining a gang where you don't look people in the eye or have the right feelings.

I would argue that this explains why most anti-autism rhetoric doesn't focus on the feelings of people with autism. If autism is so bad then they would have a lot to say about their suffering, right? Wrong. We wouldn't want to listen to what they say anyway, because they're in a gang!

3

For some reason, I always find myself more annoyed by autism pop culture that pretends to be positive. Like, focus-grouped autistic memoirs and especially interviews and profiles by non-disabled journalists.

These interviews and profiles start out with pretty much the same question or concept every time.

"When did you realize you were different?"

This is the cue for the interviewee with autism to tell an exotic story about when they were a kid and used to line up all their sparkplugs/cow fetuses. It needs to be sparkplugs/cow fetuses, and not Transformers or Barbies, because non-disabled kids have those too. The interview can then develop into something that sounds like it was written by a barker at a Depression-era freakshow.

Like other people, I used to be a child. I did lots of interesting and boring things. But talking about those things isn't the most respectful way to do an interview with me as an adult. Actually, age aside, asking me about how different I am just kind of sucks.

Every single time I see an interview like this, I wish the person with autism would say, "You mean, when did I realize I was gay?"

4

I am different from the norm in a lot of ways--just like everyone else. Like many people with my disability, I did and do love stuff that non-disabled people love too. This summer the New York Times wrote the most obvious article in history about how kids with autism really like trains. Anyone who doesn't live under a rock already knows this. Still, I doubt that my beloved toothbrush

()

is being purchased only for autistic jaws.

In writing about this I deal with an obvious trap. If I try too hard to emphasize the normality of people with disabilities, I might feed into "disabled people are just like everyone else"--a 100% true statement that also happens to be the most annoying trope of all time.

Some fun facts are true about my recent trip to Walgreens. For example, if you sent a non-disabled person to choose $15 worth of stuff to buy I can guarantee they would be able to find those items in the store much more quickly than I did. Without causing me much grief on a case-by-case basis, my comparative slowness adds up. I'm really impressed that two girls in my nurse aide class go to work every day after class. After spending ten hours of my day in class and in transit, I find it hard to even eat when I get home and things like showering and laundry are tasks I can't always manage.

I forget why, but the guy who read my TB test remarked, "You must have a lot on your mind." I don't, but a little is a lot for me, which is fine--but an actual lot would be more than a lot and not really a fair expectation.

Disability adds up. That's the first thing. People don't need to be exotic cow fetus collectors for it to be true, though my lack of cow fetuses used to really wear on my soul.

to be continued

2011-10-31T20:32:00.002-04:00

it's Autistics Speaking Day tomorrow (11/01)
I'm too fucking tired/too much of a douche
be better than I am!!

I may have a post out in a few days or maybe tomorrow night if I decide to be amazing

2011-10-25T06:28:00.002-04:00

okay so I'm finishing up Six Feet Under and I want to know if I'm some kind of alien for thinking that Claire is a horrible person and a horrible girlfriend for Billy who treats him like an accessory and then is all surprised when he isn't one? or am I just not willing to accept him as a ~disabled villain when that's really how he's intended?

band names list

2011-10-17T23:15:00.010-04:00

I keep losing this in the depths of my tumblr so I'm going to put it where I can actually locate it.

Clayton and I will never sync up on this. I like flowery/pretentious names. Probably I am going to have pretend that every time I record a little more music, it is a "side project" and gets its own name.

The List

Mirror Scare
God's Green Earth
Uncle!
Ice Cream Machine
The Talking Beasts
The Enchanted Forest
Dark Dates
HeartSaver
Flight One
Armchair Farmhouse
War Turtles
Stephen Magnet
Ashtray Trashcan
Sinners in the Hands of a Lonely Ghost

some rediscovered embarrassing ones from high school:

Courtly Love/Courtly Hate
Your Teeming Fingernails
Her Faded Sneakers
Your Blinding Mind/My Dastardly Plans
The Woods Behind Your House
Isolation Brigade
The Honor Students
Targets of Bullying
Your Delicate Mouth
Breath Control

WHO ARE YOU TALKING ABOUT?? or, sorry Pancho

2011-10-16T11:02:00.008-04:00

When I was in high school I went to a therapeutic summer camp and I used to make fun of our group therapy sessions all the time. It would go like this:

Staff: I want everyone to say something that's wrong with the camp environment this summer.
Camper: I feel like people are more cliquey than they were last year.
Staff: Which people? Are you talking about me? We don't know who you're talking about.
Camper: Oh I don't know.
Staff: Well, you must have been talking about someone.
Camper: I guess I was talking about...Sam.
Staff: What did he do?
Camper: Well, I guess he always hangs out with his girlfriend and not with other people.
Staff: Sam, how do you feel about that?

It was kind of like a rooster fight. But most Internet drama makes me long to return to my days of rooster fighting at camp. I see so many exchanges that go like this:

Person: Ringo said THIS.
Ringo: Hey, I'm sorry if it sounded like that, but I didn't mean that. I don't think I said what you're saying I said.
Person: Oh hi Ringo! I didn't think you said that. I understand. That's just what some people thought you said.

Or this:

Person: People were doing this and this and this and it felt like this!
Stefan: I'm so sorry if I was doing that or causing it to feel like that.
Person: Oh, I didn't mean you Stefan, you were great.
Damon: Are you talking about me? I really don't think it's fair to say I was doing that. And I can't help it if it felt like that to you.
Person: No, I didn't really mean you Damon. You didn't do anything wrong.
Klaus: I was there, am I one of the people who did something? I'm new to these kind of interactions and I don't really know if I conducted myself right.
Person: No, you were fine Klaus. Don't worry.

Let's say that Klaus, Damon, and Stefan were some of the most talkative people in this instance of Internet conversation and/or drama. So what happened? What is the Person talking about? Was the Internet drama like the Person is saying, or not?

Most importantly...who was phone? If the Person doesn't think that either Klaus, Damon, or Stefan did this and this and this, but somehow the conversation was like this and this and this, who did it? Was there a magical fog in the air that made something bad happen without any individual people doing anything wrong?

I know this is a tall order, but can we please start being honest with people if we think they did something? Or--as I think sometimes happens--if we have a "feeling" about a group of people, but when we look at all the individuals, we realize that none of them actually did the thing we're "feeling," can we admit that maybe it didn't happen that way?

2011-10-13T19:42:00.003-04:00

Actually, maybe it would be more efficient to just say that a lot of the posts I see about the TPGA Dialogues...well, your lips keep moving, but all I hear is

Privilege and the TPGA Dialogues

2011-10-13T12:39:00.007-04:00

This is kind of a draft for a comment I want to write somewhere, but might end up not posting if I can't get it out right.

Basically, I see a lot of people talking about the TPGA dialogues as a situation when parents and self-advocates were both focused on the issues that personally affected them and didn't want to listen to the other side or didn't want to compromise.

As a person with a disability, I'd just like to say: I love parents. They're totally sweet. I read some parent blogs that I really like and that are helpful to me in thinking about anti-ableism more broadly (since most of the disabled people I meet on the Internet have certain abilities by definition). But this doesn't have much to do with the reasons a lot of Autistic people on the TPGA threads were saying things that made parents feel "uncomfortable" and "silenced."

I think it comes down to the fact that a lot of the Autistic people who were in the conversation are involved in the kind of Internet social justice atmosphere where the concept of privilege is very central. The article I linked to probably isn't the best explanation of privilege, but it is hard to find one article or blog post that explains it really well. But basically privilege refers to the benefits that someone has when they don't belong to an oppressed group. For example I have white privilege and class privilege (and a lot of other kinds of privilege).

A really important aspect of privilege is that a lot of people who have it may not realize that they have it or how much and this can lead to a tendency to center their own experience because they don't realize how much their experience is already centered. That tendency can take the form of feeling like something is being taken away from them when in fact a situation is being made more equal. (I'm not trying to attack anyone by saying this, I just want to explain the concept.)

Where I went to college, there was a fairly big community of students who either were trans or cared a lot about being supportive of people who were trans. In almost every student group and even occasionally in classes, it had become the norm to ask people to state their preferred pronoun when introducing themselves. This can make things easier for someone who is often perceived as a different gender from what they actually are, since they can address potential misunderstandings before they happen.

Sometimes you would hear people who were not trans, who were very nice people, saying things like, "I hate going around the room and saying pronouns. Like, 'I'm sorry I'm not special!'" Because they had never had to tell people what their gender was, they found it a silly thing to do at best, and at worst, they actually felt that they looked boring and "not special" when they asked for the pronoun that would probably already have been used for them. Even though their boring and "not special" answer was being given by most of the people in the room.

I've also seen a lot of non-trans people feel like they are being insulted when they are called the word "cis," which is just a synonym for non-trans. The word NT, while not one I especially like, doesn't need to be branded a slur by people without disabilities, but I have definitely seen them have that reaction. In both examples, people from the dominant group seem offended by the idea of being called any word at all, instead of just being the group that is nameless because everyone is assumed to belong to it.

I think you might be getting to see why this seems like too long and involved a comment to post on the blog of someone I don't know! But to return to the TPGA dialogues, it is believed in the social justice community (by social justice I mean a certain way of looking at the world) that the appropriate way to talk about oppression is for the people who don't have privilege to be the authority because they experience the oppression firsthand. This doesn't mean that people who are privileged shouldn't get to talk at all, but that if a lot of oppressed people are saying a particular thing about oppression, the privileged people should accept it is true, even if it means apologizing for something they did wrong.

Also, to reiterate, since privileged people often feel attacked just because a situation is being made more equal, someone who thinks about social justice this way is probably not going to feel guilty and back off just because a privileged person says, "I feel like I'm being silenced and people from my group aren't allowed to talk." In fact, the reaction is more likely to be, "What you feel isn't the point."

If a parent thinks that the problem with TPGA dialogues has to do with, for example, everyone only caring about how anti-ableism could personally help them, then I don't think they understand what happened. It isn't possible to understand a lot of the things said by people with disabilities if you don't, either academically or just personally, understand the concept of privilege.

2011-10-09T01:02:00.003-04:00

I actually move around about as much as a dead cat right now, so I made a pop culture blog:

Magikarp Refuses to Evolve

it's mostly going to be about TV, genre, how a vampire should treat his girlfriend, etc. you might not like it if you like this blog. you might though!

surprise sanity!

2011-10-07T14:33:00.003-04:00

I've written about this before a bit. but does it make anyone else really sad when you're reading a book or watching a movie, and a character who originally seems really stereotypically disabled (this especially happens with mentally ill characters) starts to get more complex and less stereotypical and turn into a cool character, and then it's like, surprise...they actually weren't really disabled. or they weren't, like, organically disabled, if it's a mental thing. they acted like that because of something wrong that someone else did to them and/or because society is messed up.

I'm leery of saying this because it kind of sounds like I'm saying PTSD and other stuff that comes from trauma isn't a real disability. I don't think that but I do think there's this weird division in fiction between people who are "really" mentally disabled (usually: depression, psychosis, autism, social anxiety, sometimes intellectual disability) and people who appear that way, but actually it's someone else's fault, making them actually at their core non-disabled.

obvious example: lisbeth salander!!

I'm not saying some of these characters are proven beyond a shadow a doubt to have entered the world non-disabled. but there is a revelation that at least some of their disability is related to trauma, and they are "sensible" at their core even if they are eccentric. and it's like, other people think that they don't know what they're talking about, and think that they don't know what really happened to them and/or what's really wrong with the state of the world, because they're disabled--but surprise, because they aren't innately disabled, they actually DO know what's going on and what they're saying is actually true.

I read a book recently that didn't exactly make clear whether it was doing this or not. it was a great book but I felt disappointed, I guess, by the one element.

early on a (now absent) character is referred to and described for the first time. she's kind of a typical mentally ill/depressed character, there's a big focus on the strange things she did and how difficult it was to live with her and take care of her. as the book goes on she is described/flashbacked to again and again, and seems more complex, human, nice, and interesting each time. in the second half of the book we learn that she was abused, and that the way her family treated her when she was depressed actually kept her from recovering at least as much as her actual depression did. when she finally appears at the end of the book, she is a heroic character.

I thought this was really cool, but I guess I felt a little sad too, because I knew that most people would perceive the book in the ordinary model of mental illness--i.e. this apparently mentally ill character turned out to be a smart and heroic person who was wronged by other people, therefore she wasn't REALLY mentally ill, it was just because of her family, and by defeating them, she can stop being ill. the book doesn't really assert this but it also doesn't assert the opposite--that she would have had mental health problems anyway and they were exacerbated and used as an excuse by her family. it just doesn't really say.

so I've read lots of reviews of the book that are like, "IT TURNS OUT THAT HER 'MENTAL ILLNESS' WAS ACTUALLY BECAUSE OF HER FAMILY!" wah wah. this may seem nitpicky of me, especially because the author may not even have meant for people to have that reaction--but I just find it disappointing because it would be cool to see an inarguably mentally ill character who's also smart and a hero. also a portrayal of interaction between mental illness and life experience, instead of the idea that you can only have one or the other.

Armchair Farmhouse #1: Clayton

2011-10-05T23:07:00.003-04:00

I'm starting a podcast called Armchair Farmhouse and in it I interview people about why they do or don’t identify as disabled and what their history is with that identity. I only want to interview people in real life so I’m mostly going to stick to RL friends but if anyone reading this is near Cincinnati, you should totally let me interview you! I’m especially interested in talking to people who have diagnosed mental or physical health conditions but don’t consider themselves disabled.

My first interview is with my friend Clayton who has CP, ADHD, and general bad brains, and recently identifies as disabled but didn’t for a long time. You can listen to it here or read a transcript of it here.

person with disabilities

2011-10-05T13:40:00.000-04:00

DISCUSS: the phrase “person with disabilities” instead of “person with a disability.” sometimes I see this used, like, “a person with intellectual disabilities”—wait, really? how many intellectual disabilities can one person have?

I don’t know if this is just a style thing that doesn’t actually make sense, saying disabilities plural when the person doesn’t actually have multiple disabilities. but I am kind of into it because actually one person can have a lot of intellectual disabilities, or a lot of fibros or depressions or whatever. I would almost prefer to say I have disabilities instead of saying I have a disability because it’s not like it only does one thing.

what do you think?

2011-10-05T13:01:00.003-04:00

For the record I identify as disabled not as autistic.

I think if they do dialogues at TPGA again they should include people with disabilities other than autism.

It's kind of tough because I think in some ways these parent-centering issues are worse in the "autism community," not because of any real fact about people with autism or our parents, but because of the social position that autism occupies.

It's a really fashionable disability to be related to, and a really stigmatized one to have (in a complicated way--I think practically anyone can get famous for having autism while the voices of people with less distinguished disabilities are ignored, but it's almost impossible to get a normal job while being open about the fact that you have autism). To hear the average person say it, you would think that autism is the only disability someone's child could possibly have, and after watching TV for a few minutes you'd be doubly convinced.

Kids with physical, sensory, and intellectual disabilities don't have the high profile that kids with autism have, and the same goes for their parents. I'm sure this has plenty of drawbacks. I also think it gives families room to figure things out by themselves and get most of their emotional encouragement from other families rather than from the media. There's also the fact that Deaf culture is the oldest disability culture, and people with visual, physical, and intellectual disabilities have a fairly long history of advocating for themselves that anyone can read about in a book on disability rights. This isn't so much the case for people with autism.

Of course, it's also the case that any book about disability rights is pretty hard to find, and that parents of people with all disabilities are centered. I think in some communities there is more of a sense that this is something to be corrected--from my admittedly limited viewpoint, it seems that things like "Welcome to Holland" are much more of a staple in intellectual disability parent circles than they are among parents of kids with autism. But the idea is still there. The point of view of a person with a disability is always hard to remember to take.

I don't think I would be as into anti-ableism as I am if I hadn't seen how pervasive a lot of things are cross-disability, things that I had previously thought of as "autism problems." The world started to seem more broken to me but also somehow more fixable. I think parent-centering is one of the issues that people with all disabilities, and parents of people with all disabilities, need to talk about.

That said I do think it probably seems like a more severe problem to me and other people with autism than it does to people who have disabilities other than autism, because of autism's high profile and lack of history.

3. Real Life Facts

2011-10-04T15:16:00.007-04:00

(Three)

This is just sort of a combination of part two. But I want to tell you some things you might not know (I guess).

In college, a person with a disability needs documentation in order to get accommodations. Even if the person comes in with severe CP and is like, "I need a notetaker," they still need a professional to have signed off on the fact that they can't take notes.

Usually the documentation has to be from the past three years, in case someone who has dyslexia might have stopped having dyslexia and lied about it just to be an asshole.

A lot of the time, if you are supposed to get an accommodation on tests, you have to get signatures allowing you to do this every time you have a test. Not everyone really has the brains to get signatures every time, but oh well. Not everyone has the brains to go and talk to a professor about their accommodations on the first day of class, which is also something you're supposed to do. But PWD don't get any support in doing that stuff.

If you don't mind me saying, this strikes me as a situation where people with disabilities are assumed to be con artists who are just trying to get sweet deals like enlarged handouts in class or their own special room to take a test in because they think they're too awesome to be in the same room as other people. It seems like PWD basically are supposed to get punished for being disabled and thinking that it might be their right to have school be as accessible to them as it is to everyone else.

I don't have experience with this, but my impression is that a lot of this stuff also happens when a person is on (or trying to get on) Medicaid or SSDI, or when a person is on disability leave from a job. They are assumed to be lying. Pretty much anything will prove it. I remember reading about a woman who was fired because she appeared smiling in a picture on Facebook, while she was on leave for depression. I think we have all seen people (including politicians) Tweet about how anyone who gets any kind of disability benefits, and also socializes on the Internet or in a bar, must not be really disabled. Doing anything fun or political or emotionally important to you means you are not disabled. If you can get yourself together to go to a bar for one hour, you clearly can get yourself together to work full-time. Even if you were in bed for 20 hours that day?

I saw a person Tweet during the TPGA dialogues about how self-identified disabled people writing TPGA posts and participating in comments could not possibly be struggling that much, which brings me around to what I was saying. These snap judgments of ability (and automatic attempt to discredit people who claim to be disabled) are exactly like real-life snap judgments that can have a significant effect on a disabled person's REAL LIFE.

So when you say, "You obviously can live on your own,"

and the person actually can't, and it is really scary because she can't live with her parents anymore, but she also knows that most people would assume she can live on her own and she won't be able to qualify for any kind of help, or even ask people she knows for help because they won't believe that she actually needs help,

her response to you is likely to be:

(Realistic Haunter.)

2. Unevenness and inexplicability

2011-10-04T13:10:00.010-04:00

(Two)

One of the reasons I don't write primarily about my disability (if you were wondering), and also a reason I am balls at self-advocacy, is because I'm a person with--DUN DUN DUN!--uneven skills.

I actually don't believe in uneven skills! It's a social construct and this is obvious in the fact that--while people sometimes make practical blunders like assuming someone with a physical disability has a mental disability, or talking to someone who is blind the way you might talk to someone who is hard of hearing--most people would admit if they were asked that there is no logical reason someone who is blind must also be deaf, or someone who is physically disabled must also be mentally disabled. And no one feels the need to say someone has "uneven skills" because they can hear but not see.

But within categories of disability, especially the mental disability category, there's this expectation of evenness. If someone's abilities aren't exactly at the same "level," whatever that means, they're possibly an amazing curiosity, but probs lying.

A person can write but not talk? A person scores high on IQ tests but can't do well in school? A person does well in school but can't figure out how to go grocery shopping or make a meal? A person can cook but not clean? A person can make some kinds of phone calls but not others?

No way guys, all these people are just liars! Check it out, this person claims she can't talk, but I found a video of her SINGING! Oh hey, you said you can't make phone calls, but I know that you made a phone call one time. Caught in the act!

As a person who can't make certain kinds of phone calls, like phone calls to follow up on jobs for example, I would never be stupid enough to tell anyone this. When someone tries to give me advice on finding a job and the advice includes phone calls, I just stop listening to what they're saying and start smiling really big to show them that they're helping me LOTS.

"Why can't you make those phone calls?"

"I don't know."

"How can you not know?"

"I don't know? I just don't? I guess probably you could locate it in something about phone calls feeling insincere, and worrying about bothering people, and not knowing what I would say in the phone call, all of which are kind of horrible things, multiplied by like a hundred because I applied for a hundred jobs so there isn't even an end in sight."

"Oh so you could make one phone call."

"I mean, theoretically, probably? I'd sort of deal with it all day. I'd write myself a letter about it. Maybe someone could sit with me. But it isn't one phone call, it's a hundred phone calls."

"Why can't you make a hundred phone calls if you can make one?"

"Because it would take a hundred days."

"So you can make phone calls!"

"You're totally right, if I took a hundred days and used them to only make phone calls and felt calm about everything else. I could probably do it in less than a hundred days if I had my own personal phone call aide to support me in all the phone call problems and keep me from running away from the phone. Maybe I could even do it in a few days, with a phone call aide. You win. Great job. Are you going to hire one?"

"No, that's stupid."

"I know, so why did we have this conversation?"

No one knows!

One time my dad tried to have a conversation with me because I said something about it taking me a lot longer to do certain things than it took other people. He kept asking me why. I was like, "I don't know, but towards the end of college I started having to pull one or two all-nighters every week, because I could only get work done if I had that much time to do it in." My dad kept asking me why I didn't do things like "sleep for a few hours, and then wake up and work." I was like, "I don't know, because I know that wouldn't make any sense for the problems the all-nighters were supposed to correct?"

We had started having this conversation because I didn't think I could write letters that night if I also wanted to go to bed at a normal time. My dad said, "What about you bring your letters downstairs and I sit with you and make sure you write them right now?" This sounds nice, but I already knew what kind of conversation it was! For some reason I agreed anyway just to see what happened.

When I went upstairs, I said, "If I don't come downstairs in ten minutes, will you remind me to come downstairs?"

My dad was basically like, haha! Caught in the act!

Because--you saw this coming if you have "uneven skills"--the fact that I asked my dad to remind me to come downstairs showed that I actually was just lazy and didn't want to take responsibility for my own actions. Asking for this was the final straw that pushed him over into thinking that the whole problem I was describing (which he'd obviously made it clear he had his doubts about) was too ridiculous to be true.

I don't know if it seems weird that my dad wouldn't believe I was telling the truth, since I have been diagnosed with some disability or other since I was a little kid. In my family, whether I'm disabled is not a controversy. But when I try to tell my parents a fact about my disability, it is always assumed to be not true.

Uneven skills can also be called inexplicable impairments and they are basically anything someone thinks is ridiculous or impossible. I guess you might be wondering why I am just writing about myself, when I am supposed to be writing about Internet arguments. The reason is that, first of all, random Internet judgments of someone's ability tend to be made out of the same mindset that assumes someone is lying because their disability seems too "uneven" or unlikely.

Someone with a developmental disability is typing? Someone with a developmental disability is writing a blog? I saw on their Facebook that they're in college! My bullshit detector is going off--this combination of facts is simply too ridiculous to be true.

So first of all these judgments often come from the fact that most people have a poor understanding of uneven abilities (especially when those abilities are stated by a disabled person and not a parent or best of all a professional). But second of all, it's because so many disabled people are really used to having people (at best) smirkingly accept our stated impairments, if not outright challenge them, that it is so upsetting and frustrating to have some random person on the Internet imply we are not disabled because we have a blog. At least my parents tell me to my face that they think I'm trying to get away with something.

1. Irrelevance

2011-10-04T12:54:00.007-04:00

(One)

Ability statements are somewhat related to the tradition of the self-narrating zoo exhibit, and I'll explain why. First of all, I think people tend to get told their disability is mild (or something else, but whatever the words are they usually imply it's not a real disability) when they haven't gone into a lot of detail about their disability and how it affects them.

The thing is though that there's no correlation between how much you talk about your disability and whether your disability is real or not. So why do people imagine there is? I think it has to do with the expectation that disabled people who talk about disability will always be talking about their own disability. A writer who self-identifies as disabled, but isn't describing her own disability, produces writing that is inconsistent with what's expected from a disabled writer. Maybe this is why the legitimacy of her disabledness gets called into question.

I think some people who have made ability statements would argue that they weren't telling the disabled person her disability wasn't "real." They were just arguing that as a talking person, the disabled person doesn't understand the experience of people who can't talk (or whatever the ability in question is). But in the context in which ability statements appear, they almost always are jarring in the extent to which they don't follow naturally from the conversation.

"I am disabled, and I think--"

"You can talk."

"I know I can talk, but anyway I'm disabled, and I think--"

"You're less disabled than someone else."

"I know I'm less disabled than someone else, but I was just saying--"

"You can attend college."

"Actually I had to drop out of college for reasons related to my disability, but anyway, I had something to say, and this is kind of offensive."

"Why are you denying that there's a difference between you and people with severe disabilities?"

As a queer person, I can make this comparison, I think: someone who's talking about something "as a queer person" doesn't usually have a lot of straight people clamoring to tell him that he's bisexual rather than gay, or that he's "straight-acting," or that he came out late in life.

Queer is a pretty broad word and so is disabled. If someone is talking about disability as a broader category than some really specific thing like not being able to talk at all, then I don't really see the motivation for needing to pin down a lot of specific facts and--it often seems--put the disabled person in her place by highlighting ways in which she is "less disabled" than someone else.

I don't think it is surprising how much it happens, because the way disabled people are treated is often all about putting them in their place for wielding the term "disability" themselves instead of letting someone else have it (and that has to do with the next thing I'm going to say). But when it happens it is really offensive because it takes a conversation that was often more abstract or general and steers it into being about the details of the disabled person's life.

Ability statements are a personal attack because they are dehumanizing. By throwing them out there when they are irrelevant, you indicate that a disabled person doesn't have the right to just express ideas and feelings like you do. She must be on display.

Ability Statements Are a Personal Attack.

2011-10-04T00:54:00.009-04:00

I just figured someone should post a to-the-point explanation of why this is the case. I think some people, especially people without disabilities, will say something that they think is pretty innocuous, like, "You obviously can live on your own." But then they check back on the comment thread and the person they said that to looks like this:

(Realistic Haunter.)

How come?

1. Irrelevance
2. Unevenness and inexplicability
3. Real Life Facts

2011-09-30T23:10:00.008-04:00

I got in an argument with a friend, as one does, and said something I may not have actually come out and said on the Internet before, but it is the basis of a lot of things I think. I really respect her for being willing to have this conversation with me.

her: i don't want to have a child with a disability because i know that if i do i will have to, in fact, love that kid like crazy and put my everything towards its thriving. i mean, depends on the disability but i think that a lot of parents do struggle with that

me: okay well, I don't mean to be a dick, but just so you know people can accidentally have a child with a disability, my mom did, obviously. so, like, keep it in mind b/c I always hear people being like "I'm not going to have a kid with a disability because I can't handle, so I'm getting amnio" or whatever. and I'm like....ehh.

her: no, of course but amanda, i don't mean to downplay whatever your mom went through, but you obviously do not have as severe a disability as someone with downs. if my kid had aspergers it would be really different

me: oh my gosh, for real?

her: yeah of course

me: how many people do you know with down syndrome

her: well, only patients

me: I know a lot of people with down syndrome and when people say things like that I wish they could know all the people I know

her: but anything really, whether it was downs or something like marfans or fragile x. i know that they are and can be really, really awesome people to know. and i'm not saying i wish that they don't exist or anything like that at all, it's just obviously they aren't easy kids to raise.

me: you think marfan's is worse than autism?

her: i don't think marfans is worse than autism, but there is a spectrum with autism

me: okay like, I don't want to be a dick to you b/c I think you're really cool but...this is really silly

her: no it's cool, i want to know what you think

me: and I know you feel like "Amanda's not really disabled, she's my friend, but ~some people are really disabled and I feel different about them~" sorry if that's a harsh way to put it, but something I have noticed about the way people talking about parenting a disabled child: people can frame any disability however they want, like, oh it's really difficult, so difficult that the parent doesn't have to be judged for any decisions they make, ever.

I actually think something that has made this really clear for me is that autism is a really stigmatized disability in terms of kids with autism supposedly being really, I don't know, cold and smearing shit or something, and with down syndrome there's more a stereotype of kids being sweet--so actually you see parents being able to frame raising a kid with autism in a really negative way, much more negative than parents can usually get away with when it comes to ds, even if you compare two essays/blogs/interviews/whatever where the kid with autism is more independent or whatever than the kid with ds. and that is why I find the "your disability is milder" thing to be kind of a red herring.

I grew up disabled in a really stereotypical way, like I felt really guilty and like a huge burden. it doesn't really matter what disability I have, it's a cultural experience that people have across levels of independence, IQ, etc.

(additional note: I was predicted not to be able to live independently, or at least that was implied, and this hangs over like...every conversation I have with my parents. it's a huge factor in our relationship and in how I live--and actually, in my abilities as well. and sometimes it annoys me when whether someone actually CAN live independently is treated as the most important thing when they're talking about disability or ableism. because tons of stuff can happen to you just because of predictions that someone made about you when you were little, and that matters even if the predictions were wrong!)

2011-09-30T15:11:00.006-04:00

I guess I'm curious what everyone thought about the TPGA dialogues? And by the dialogues, I mean the comments, because people more or less seemed required to be polite in the main posts so I started being a lot more interested in the comments. People were more straightforward there, and the comments started getting talked about elsewhere as being really unwelcoming and vicious toward parents and making parents scared to engage.

Which is weird for me because last week, the comment threads made me so happy, which was cool because I was really sad about RRH. I'm sure we all know why I would be sad about RRH. I used to be basically his blog's #1 fan so when I saw him refusing to engage with disabled people at all, really unconvincingly pretending to respect what people had to say and then running off to his Twitter to complain about them...it was kind of heartbreaking. I don't know if anyone here is a Justin Bieber fan, but if you are, you know how you felt when the Biebs rode a bicycle through Wal-mart and knocked over displays and supposedly got banned from the state of Vermont. It was that kind of feeling.

So I couldn't help looking at RRH's twitter every minute of every day, and every time I looked at it I'd get really depressed, but then I'd go to the dialogue comment threads and there were all these totally sweet parents there! I loved it. Some parents sometimes would feel like they were being attacked and say so, people would go back and forth, no one said anything really awful to anyone else, and most of those exchanges would conclude with someone saying, "That makes sense, thanks for explaining," or something like that.

Some parents are nice and want to listen to disabled people! Some parents don't respond to everything that happens by saying "I feel scared" (of a bunch of twentysomething disabled people on the Internet?) "and I feel like you're saying I'm a bad parent and like you're saying I shouldn't advocate for my kid!" I was so into it. It was the coolest.

But I keep seeing people saying that it was this really intimidating situation where no one felt like they could talk. I do think towards the end there was an unfortunate degree to which, like, 4 people would tell one person at once that they disagreed with them. But it was still done in a pretty polite way and I just don't see this big scary stampede where no one was allowed to express opinions?

Something worth mentioning

2011-09-28T00:32:00.002-04:00

When I started college I made my first disabled friend. His name was Clayton.

I should probably mention Clayton wasn't actually my first friend with a disability. I'm my own first friend with a disability, of course, and aside from that I went to a high school with a high population of students with learning disabilities and mental health issues, and also knew a few kids with chronic illnesses. I didn't consider any of these people, or myself, to fit into the category of "disabled."

What made Clayton my first disabled friend, then? He was the first person I met who had a visible mobility disability, and at the time that's what the word disabled meant to me.

Having a disabled friend was a new experience, like having a friend from a country I had never been to. I asked him how he felt about the word lame. I worried about saying things that would be offensive to "a disabled person." During an intentionally shocking period of our first year, I earned the right to call him a gimp while he would greet me by saying, "Get away from me, you stupid dyke!"

From pretty early on, when Clayton talked about his CP, I would talk about my autism (or my ex-autism as I thought of it at the time. I used to think I had recovered from autism and was just really lazy and stupid, but I'm sure I've mentioned that before). It just seemed on-topic. By the end of our sophomore year I was sort of maybe knocking on the door of coming around to identify as disabled. Clayton told me by his estimation I belonged in the club.

Then we didn't see each other for more than a year.

When we saw each other again, I was Super Disabled and thought of everything in a political way that he didn't necessarily relate to. I always felt privately like my opinions were less legit because I didn't have a "real" disability. Actually if I started to feel like he was outranking me in terms of being disabled, I would start talking about all my mental health problems to make myself feel better. Clayton told me that whenever I left the room, his roommate would be really worried about me.

One time I referred to us as disabled and Clayton said he saw himself as having cerebral palsy rather than being disabled because being disabled seemed like a much more general, worse thing that implied he couldn't do some things he could actually do. This made me wonder about something I guess I hadn't thought through before. Basically I was thinking that if you have a disability that people don't think is legit, identifying as disabled is a relief, but if everyone sees you as disabled, it's kind of something you can be trapped in and not want to identify with.

Then we didn't see each other for like nine months.

After college I came to stay with Clayton and his mom so I would have a place to live while I figured out a job and apartment. Instead, we started drinking and watching all of Vampire Diaries. After a few weeks of this I felt lazy so I decided to start my project where I would interview people asking them if they identified as disabled, and why or why not. I thought it would be clever to interview Clayton since I had initially seen him as the only disabled person I knew, but in terms of identity, I was disabled and he was not. But Clayton said, "Actually I consider myself disabled now. I think I didn't before because people were always telling me I wasn't really disabled."

2011-09-24T14:02:00.004-04:00

Apparently someone decided to call and harass RRH on the phone because of the tpga "dialogue." As everyone knows, it wasn't a dialogue, RRH didn't seem to care much about the issues being discussed, blah blah blah, but guess what, that's a totally irrelevant.

Part of being a member of a minority community is that you can't just do whatever you want all the time.

When a person with a disability expresses how they feel about something, especially if they are angry, other people regularly act as if the PWD has done something on the level of calling their house and harassing them. It can be kind of funny to look at this big divide between how someone's being characterized (scary and intimidating) and who they actually are (a disabled, usually young person typing comments on the Internet that are often more polite than the comments of the person who feels so "intimidated").

Well, guess what, there's no divide this time, because someone actually did what non-disabled people expect disabled people to do all the time. They actually did something scary. I'm sure this person was really mad and going through a lot, but, guess what, minority community! You fucked EVERYONE.

Now, I know this seems really unfair. Why aren't I writing a rant at parents who have threatened my own disabled friends? Because they're not in my community. Their decisions are their own, your decisions are ours. I totally understand that this sounds offensive--why can't disabled people just be individuals? I don't know guys, but we're just not, so please do not do things like this.

trigger warnings!

2011-09-23T14:20:00.006-04:00

responding to a comment on this post

I'm sorry if I'm being defensive. This is a really long comment, I know it sounds really douchey at the beginning but bear with me if you can.

I haven't ever used trigger warnings on this blog, not because I have a problem with them (I use them sometimes on tumblr), but I guess because a blog is more like a home and it would feel like redecorating. I write about ableism and abuse, I write about stuff that makes me upset (I go back and forth on using the word "trigger" about myself because I still feel like I don't know exactly what it means and I don't want to appropriate it), I write about really bad brains and stuff I felt and said when I was in manic, suicidal, and/or violent states which often includes hatred of other disabled people. I guess from an aesthetic point of view I wouldn't like to adopt a policy of warning for this stuff because it would feel like oversimplifying and spoiling what the post is about. I've written fiction all my life and I studied creative writing in school which probably makes me more touchy about style and composition than makes sense for what the blog actually is. But I haven't really thought about this in depth, because no one has ever said anything about my posts being triggering (at least not in a direct way that implies I should do something about it) so I figured that people who were likely to be triggered by my blog were just choosing to read other blogs.

I mean maybe people just haven't wanted to speak up and ask for trigger warnings because I might react really defensively! Here you are commenting for THE FIRST TIME because this is important to you and I'm like...feeling (and sounding, to myself at least) really defensive.

Possible background!

I am kind of sensitive about this particular issue because of what happened when I made my tumblr post (which did have a trigger warning) in the spring. I was obviously feeling suicidal and dissociative and was having all these violent urges about myself and other people. However, only one of the people who reblogged the post on tumblr expressed that they were worried about me. Everyone else, including people I considered friends, just reblogged it to call me out for being ableist. At one point I started self-injuring and posting about it to try to prove that I wasn't less severely affected than the hypothetical people I was mad at. The person I was talking to continued to call me out for being ableist. People I didn't even know reblogged the post from her and wrote comments about how my post was "the dumbest thing ever" and I obviously didn't understand what psych-disabled people were going through. Anyway. It was a really bad experience, and while it was bad for everyone else and not just me, I still feel resentful about it because I felt like people only wanted to point out the flaws in my argument when like...my argument was obviously super flawed because I was MANIC.

Anyway, because of all this I felt like you were calling me out and telling me I was wrong for having those feelings or even mentioning having had them...when it's just as likely that you were just telling me that my blog wasn't accessible to you and I should make it more accessible. Thoughts? (If you want.)

I would also like to hear if anyone who reads this blog finds it really triggering in a way that makes them not want to read it or makes it really stressful to read, in a way that could be avoided with trigger warnings and/or another solution.

2011-09-22T22:20:00.006-04:00

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.

2011-09-22T03:18:00.007-04:00

(trigger warning for description of me having violent feelings toward myself and other disabled people)

I couldn't sleep and wandered into Clayton's room and said:

when I was 13 my dog died and I felt really sorry for my parents because now they only had me. Whenever I thought about the fact that I was an only child I was filled with this guilt I tried to avoid thinking about, that they didn't have another kid to take their minds off me.

Last spring I was almost done with college. My parents had told me that I would be able to finish college in four years if I worked hard enough. All my friends who had disabilities like mine were either having a lot of trouble in school or had already had to leave and I was determined not to be like them. I kind of hated them. I got in a big fight on the Internet because I made an angry blog post about how I wanted to kill people who took medical leaves because I would kill myself rather than do that.

I would get really angry and scared about potentially not doing schoolwork and not being able to graduate. I would get suicidal. Sometimes just trying to come down from being really suicidal made it hard to do work but I couldn't tell my professors why my work wasn't good or on time. It made me feel upset to wonder what they thought of me but if I told anyone I was suicidal I could be removed from school and I wouldn't be able to finish in four years.

My parents do a lot for me and I'm very close to them. I consider them great people but a part of me is disappeared from them.

this is a collection of tumblr posts so it may get longer

2011-09-21T11:38:00.008-04:00

Maybe you know what's going on. If you don't that's okay. I don't want to use the person's name and maybe that's dumb but it just seems like such an archetypal situation that I don't see the point of causing drama. He seems unreachable. If you know who this is you already know. It's a non-disabled parent vs. disabled people internet drama thing. It is taking a lot out of me and I'm not even directly involved.

Zero

[I deleted this post immediately after making it]

has ted ever considered treating other people with 1% compassion? just do it! it'll be great!

One

also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.

it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:

“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”

okay dude, so let’s look at this.

basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.

but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)

anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!

but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”

IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!

Two

[obviously, this was also a direct comment on one of his posts]

Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)

So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.

The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.

I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.

(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)

Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.

Three

“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter

HEAD MEET DESK
FOREVER

but….but….HE IS HAVING IT!!! so therefore he ALSO sucks

and you’re talking about it on twitter so you suck too!

everyone sucks! we all have luxurious not-really-disabled lives!

[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]

Four

you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)

I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.

so ted was like…okay. That makes sense. I was jealous too.

yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”

now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.

it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.

but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.

different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?

now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.

imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?

not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?

this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.

his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”

what if we were all really disabled?

what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?

I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.

Five

from my favorite story:

Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."

"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.

Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."

3. How you learn how things are done

2011-09-15T15:25:00.007-04:00

My dad told me that most parents wouldn't understand my "visceral reaction" when I see indistinguishability held up as an ideal, or even as something that would be nice. As if we were talking about religion, which he dislikes, he said, "Maybe it's not important and it's not what they should want, but most people want to be normal, so they want their kids to be normal. You can't tell them their choice is wrong."

"I don't really think it's parents who make that choice," I said.

"Oh, so it's just the evil professionals making parents do what they want?"

"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.

Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?

It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.

Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.

2. How Indistinguishability Keeps Its Groove

2011-09-15T15:08:00.004-04:00

I'm sorry to mix metaphors because I often compare zombies to people like me (unusual gait, does the same things a lot, often judged to be better off dead) but let's focus on some different aspects of the zombie and swivel that image over to another group of people: staff.

How did you get your groove back? Well, indistinguishability, you never really lost it, and that's what scares me. Maybe this is a failure of mine because how can I be more scared by a difference of opinion than I am by more obviously bad things, like violence? I'm not sure. I know I find vampires pretty unterrifying when they're sadistic, but zombies are unbearable because they don't even know or choose the crimes they commit. There's nothing to explain.

So what I'm trying to do is explain. Not why I'm against indistinguishability, cause I have, but why it seems so stupid when I say that, like I'm against electricity. People respond with the most ill-thought-out support, and it doesn't matter at all. "But flapping your hands is against social norms and kids need to learn to follow social norms!" Across the country, kindergarteners are told to be yourself and do the right thing even if it makes you stand out--except when it comes to this one group of little kids. "But other kids will notice that they're different and exclude them!" Okay, just like when kids are bullied for race or religion their teachers start training them to look like white Protestants. Maybe you're thinking people can't pretend to be white, but some people can--and besides, good luck convincing his peers that a kid who can't talk isn't disabled, even if he keeps his hands by his sides.

This is a completely meaningless argument though because anyone who defends a point so weakly has already won. Even if someone says "Yeah, I guess you're right," it's like some interesting philosophical discussion about unicorns. Intelligent input darling, now let's go back to our day job where we kick horses in the face for having horns when they shouldn't.

"Hey hold on," you may be saying, "I'm not kicking anyone in the face! I'm just writing a behavior plan where if Erica talks about unicorns too much she doesn't get dessert."

That's cool but a lot of disabled people have had to live with this stuff longer than you have, and it kind of feels like being kicked in the face.

"Aw, but it doesn't feel that way to me."

That's because it's your job. Everyone's job feels normal to them. Our government likes to pretend that Abu Ghraib happened because Lynndie England is a bad person, but she just had a work environment where she thought it was normal to act a certain way. I know this is an aggressive comparison, but there isn't a point of wrongness where the things that you're doing suddenly feel wrong. I feel that if people were more aware of the broad spectrum of things that can feel normal when it's your job, it would possible to engage them in real conversation about what they do.

Your feelings are the feelings of a dick

2011-09-09T14:26:00.012-04:00

Mourning people who are alive is fucked up. Fact! Members of the international brethren of people who are not dicks have been talking about this for fucking ever. Most of us are disabled though, especially when it comes to mourning people with autism. So try to understand how AMAZING Tom Fields-Meyer's post on Motherlode, the New York Times parenting blog, is.

Poor Fields-Meyer had the nerve to write a book about raising a son with autism, in which he outright says that he didn't grieve for his imaginary non-disabled child. After being encouraged to grieve by a counselor:

I had no instinct to mourn. I had carried no conscious notion of what my children would be like — boys or girls, tall or short, conventional or a bit odd. I planned only to love them.

Fields-Meyer was obviously dealing with some difficult stuff and doesn't make an effort to hide it, but nonetheless, after Lisa Belkin quoted him in Motherlode she got a comment from someone "bristling over the whole assertion that [Fields-Meyer] never needed to mourn...as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme." Yeah, fuck you, Tom Fields-Meyer! How dare you feel different from how someone else thinks everyone feels?

Fields-Meyer wrote a pretty sweet guest post on Motherlode where he basically defends his lack of mourning. He doesn't tell anyone what they should be doing or feeling, but he doesn't really make it sound like not mourning is just an emotional reaction. It's a principle.

I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.

The international brethren of people who aren't dicks rejoiced. But what did everyone else do?

I'm sorry to tell you that sometimes I read the Twitter of someone whose Twitter I shouldn't read. It makes life awful. Sometimes it puts me in a bad mood for the rest of the day. Anyway, I was moseying along reading this person's Twitter, when my bad mood arrived!

The person and their friends were talking about how "skeptical" they were that Tom Fields-Meyer wasn't lying about his emotional reaction to having a disabled child, and insisting that they "weren't bad parents for saying it's hard." Did anyone say they were bad parents? Did anyone say it wasn't hard? (But you know that.) Basically Fields-Meyer gets turned into this GUILT MONSTER who's yelling at parents who grieve--parents who, I have to say, started this whole thing by accusing him of lying about his own feelings. Eventually the parents settled down a little--like, "Well, I guess it's okay for him to feel that way as long as no one is saying or implying anything negative about parents who grieve, or being judgmental about other parents' reactions."

Oh thank God. Those poor parents who grieve can't even step out the door without the vast throngs of judgmental parents who don't grieve just railroading over them and accusing them of being bad parents who don't understand how 100% footloose and fancy free it is to raise a kid with a disability. I am so sorry guys. Life is TOUGH.

This scenario doesn't really sound like anything I've ever seen in my life--like I said, the international brethren of people who aren't dicks is not a big group of people, especially when it comes to parent membership. But you know what, even if it was? No one has the right to have everyone agree with and support everything they do. Having a disabled kid doesn't give you that right and neither does anything else. People are allowed to disagree with you--both in a fairly gentle way where they just say that they prefer to do things differently, and by telling you that you're a major dick for doing things the way you do.

I personally feel that grieving for a person who is alive is fucked up, just like lots of other feelings that people have. I believe that there are feelings that are WRONG. Now, I am Christian, so I may talk about these things in a different way from people who aren't Christian, but what I mean is that we all are bad inside and have bad feelings, and sometimes we have to recognize a bad feeling and treat it like one. Some examples off the top of my head:

I hate waiting in line. Sometimes I want to scream or break something because I'm frustrated in line. Even when I'm not that worn out, I still can feel kind of angry at the other people in line, even though they're not doing anything bad to me. These are bad feelings and I shouldn't tell everyone in line that I'm mad at them.

Some people who don't know anyone who is trans might feel nervous and self-conscious upon meeting a trans person for the first time, or be consumed with nitpicky questions about how to treat the person "correctly." When you're in this situation, you wouldn't tell the person how uncomfortable you feel that they're trans, nor I hope would you go around telling a bunch of other people how uncomfortable you are. It's pretty rude and is going to make the awkwardness much worse.

A teenager sometimes feels jealous of her brother with a terminal illness, because he gets so much attention. She can't help how she feels, but is it reasonable? Would it be fair for her to talk about it constantly and insist that everyone around her validate her feeling?

And to return to an example that Fields-Meyer briefly touched on--some parents mourn when they find out their kid is gay. It's not necessarily as dramatic as disowning the kid. They just feel really sad because they thought they were going to have a straight kid who would do certain things, and now they have a gay kid who is going to do things differently.

How do people who don't consider themselves anti-gay think about these feelings?

People admit to having them. People admit to being sad and having to adjust, but ultimately these feelings are something to get past, and they are fucked up. They are feelings that come from living in an anti-gay society, and they are anti-gay feelings--the feelings of a world that wants everyone to be straight. Those feelings don't make you evil, but they are something awkward, something that can cause distance and a failure to connect with the real child--something to surmount. These feelings definitely aren't elevated as something parents have to have to have a valid experience. You wouldn't, I hope, accuse someone of being dishonest because they said they didn't mourn for their gay child.

I don't condemn anyone for having particular feelings but there is an obvious distinction between having feelings that are ableist--that come from a world that wants everyone to be non-disabled--and blaring those feelings in public with a self-righteousness that almost looks like pride. There's a difference between saying, "Wow, this blows, I'm having these awful feelings," and saying, "I have these feelings, and so does everyone, and don't ever judge me for having them or even make me think that you might be judging me." Because once you're doing things the second way, you're not just having the feelings, you're treating them like they're sacred. Like your right not to feel guilty for having picked up some ableism in your life trumps everyone else's right to be anti-ableist, or have opinions about parenting, or have opinions about anything that might involve you being wrong.

But okay guys, I have to talk about the guilt thing now. You can't even handle feeling guilty for a second on the Internet because some other guy might be "more self-actualized" than you are. You can't handle someone telling you that your feelings, although real, do not make sense. You can't handle someone like me coming out and saying, hey! Your feelings are bad!

If you can't handle that much guilt and judgment, how do you think you would deal with the guilt of being a disabled kid whose parents publicly talk about the fact that they expected a non-disabled kid and were heartbroken not to get one? Whose parents constantly defend their right to feel that way even when other people point out the dangers of nursing and normalizing those reactions?

I admit that most of this post has been making fun of you, because I've lived with guilt for too long to have patience for people who can't handle it. But I sincerely urge you to think about it, if you are one of those people and you somehow ended up here.

I imagine this could be triggering

2011-09-07T01:55:00.005-04:00

Also, one of the reasons that I find it so upsetting to be told that social skills do exist is that I think social skills are about as legit and dangerous as sexual skills--and by sexual skills, I mean the idea that being good/successful/able at sex is a flat line going from No to Yes.

Like lots of kids with autism I was put on antipsychotics and it screwed up my life. One of the things the psychiatrist used to explain why I should be on antipsychotics was the fact that when he asked me how high my sex drive was, I said it was "low," which indicated that I was depressed. I was 15 years old and felt terrible about myself and my body. I'm also queer and an s/m person among other things, so I haven't always felt like engaging with my sexuality because it's kind of alienating. Also, those things aside, some people just have low sex drives.

So we know that--just like not looking people in the eye is a way to have bad social skills--not wanting to have sex as much as other people do is a way to have bad sexual skills, to be bad (worthy of medicalization) in the area of sex.

I wonder what the other bad sexual skills would be. I imagine they'd be a lot like bad social skills.

Not liking the same things other people like.

Not reacting the way you should.

Crying when someone does something you're supposed to like.

Saying no to something that everyone's supposed to do.

Bringing up something weird just because it makes you happy.

Throwing a fit just because someone tried to make you do something you don't like.

Just not being interested at all.

what not existing means to me

2011-09-06T23:26:00.012-04:00

Thinking of trying to post here more.

So I'll just say the social skills conversation makes me CRAZY*? It's become yet another of the things I can't even stand to talk about kind of like when someone tries to tell me I'm high-functioning and can self-advocate.

(*I don't EVER think it is a problem to talk about and examine language use but I'm not necessarily for having rules about it, so please don't comment and tell me why you don't think I should use the word crazy, I know why you think that and I think about it all the time.)

and today I flipped out at my friend just because he happened to say something about having social problems, in a kind of "well, you know, you and I are different this way" sort of tone. I think I said something like, "NO! I'm so fucking sick of people like you getting everything and being THE ONLY PEOPLE IN THE WORLD" which after I said that I was kind of like, shit, what am I talking about? what does that mean? why am I mad?

I am not really mad at my friend, or another Autistic friend at whom I blew up similarly about two weeks ago.

I'm mad because before I got to know other people with autism and DD, I thought I was some kind of Super Minority, in fact I did not consider myself to be on the autism spectrum at all, because I was told that "Asperger's" or "HFA" (the type of autism I was supposed to have, being a college student who could talk) was primarily about "lacking social skills" which apparently in a classic form meant not reading facial expressions (which I'd been tested on so I knew I could do it), insulting people by mistake, making people listen to speeches about your interests, not being polite, not knowing what people were feeling, and so on.

So I wasn't like this so I usually didn't consider myself to have ASD. In fact sometimes I knew things about people that other people didn't know.

At the same time, it was pretty clear I was kind of batshit* (in terms of how I processed life and how I felt sometimes) and I also had trouble with things related to friends that no one I knew had trouble with. For example when I was a first-year in college I got really attached to a friend named Clayton and wanted to spend time with him every day, so I would go sit outside his door. He would be happy to see me when he was there but he usually wasn't there so I'd just be sitting there reading and doing my homework and I HATED myself. I liked him so much that I wanted to see him all the time but I got so I hated everyone who lived on the same floor as him because I thought they were watching me and thinking how I wasn't normal and I was some kind of creepy stalker, and the next year when Clayton started living with the guy who had lived next door to him it took me a long time to stop hating him because I believed that he judged me.

The next year I had a friend named Noah who was a good writer but wanted to quit writing because it made him depressed. Noah spent a lot of time listening to me talk because he was a quiet person and it made me miserable because I felt that Noah and I didn't have an "equal" friendship, so I snuck onto Noah's computer and read pieces of his writing that he had forbidden me to ever read. It caused a huge problem in our friendship that I sometimes think has never gotten better, and it happened because I was trying to do what I thought was the right thing. (For some reason not one but two people who read my blog and who I attempted to be friends with have used this story to illuminate something about me they don't like. Thanks guys. I actually already feel terrible about it and find it hard to write about because it was an awful experience, AND I'm not the kind of person who would ever do something like that anymore, so it's not even a good example of whatever you don't like about me now.)

In the last year of high school and the first few years of college, I considered a girl named Lisa my best friend. I stopped considering her my best friend after a fight we had on the phone until four in the morning, my senior year, about ten months ago. A lot of our fight had to do with her feeling that I was mean and overly strident about anti-ableism, something she told me she "just [didn't] care about, I guess I should, because you're disabled, but I just don't." I could be wrong but I wonder if she thinks that identifying as disabled is some new thing I just invented/discovered and isn't who I really am. It's something that makes me feel oddly guilty and start questioning myself--because if Lisa doesn't remember me being disabled, then how is it even real? She's my oldest friend and should be the best judge of things that are phases or poses.

But it was a really long fight, and towards the end Lisa started talking about how when we were first becoming good friends (I was about 16 and she was about 15), whenever we had a conversation I would talk for a while and say, "I've been talking too much, now you talk." Lisa can be quiet with people early on, and it made her feel bad like I was constantly criticizing her for not talking in the way I thought was correct. She was saying that early on things from our friendship still affected the way she felt about me and it was hard to get out of resenting me for them.

Obviously, "I've been talking too much, now you talk," looks to me very much like sneaking on Noah's computer because I thought our friendship was too one-sided, and being upset that with Clayton I always sought him out. Whatever you call that problem, it was the biggest problem I've ever had in relating to other people.

Anyway, before I got to know other people with autism and DD, it was obvious to me that I had some disabled type problems like moving a bit differently and loving things too much and getting so frightened that I couldn't sleep or recognize words, AND I also considered myself to have "social problems" because this stuff with Noah, Clayton, and Lisa wasn't something that most people seemed to worry about. My social problems were not textbook autism problems, so I figured my autism must be very mild, but at the same time they seemed to wreck my life so much more than just being rude or not reading facial expressions. When I would interact with people who I imagined might be "autistic"--people who monologued a lot and weren't very sensitive--they seemed SO much happier and less distressed than I was and they seemed to pretty much have friends and not be killing themselves over whether they were calling their friend on the phone first or their friend was calling them. So how could I be more "high-functioning" than these people? My social life occasionally exploded into these awful periods where I was convinced everyone hated me and I felt sick. Also, it was nearly impossible to make new friends, because I figured that all of my friends' friends would never want to be friends with me because I was such a fucking freak.

Where am I going with this? Well, when I got to know some more people with autism and DD, and I began to think critically about this, I came to some conclusions:

1. A lot of people with autism aren't at all like the textbooks.
2. Autism is a lot more than social stuff, even for people who can talk. (This came out of a long period of thinking of myself as "more like a severely disabled person, except I can talk" because severely disabled people were allowed to have a lot of emotional troubles and problems with transition and stuff.)
3. Eventually: social skills don't exist.
4. I am a human.

I know I am disabled, and accepting that has really changed my life, but so has believing that I'm not socially impaired. In February I went into the first class of my last semester and made an awkward comment/joke to the girl sitting next to me. She looked at me blankly and I started to feel about as low as a Yeerk squashed under an Animorphed elephant's foot. It almost ruined my whole day--then I thought, we have different senses of humor! Maybe she doesn't have much of a sense of humor at all! She isn't a representative of humanity, and I haven't lost a war. We're just NOT THE SAME.

Or, God forbid, someone doesn't understand something I said. This used to be something that I would actually LIE about and argue about to anyone who I perceived as trying to tell me that I wasn't normal and couldn't do everything I thought I could. "Of course they understood me! You're just being overprotective! Maybe there's something wrong with YOU!"

Hey, guess what: my speech is hard to understand. AND sometimes I say things in a way that is jumbled and not connected. Oh no I'm going to drop out of school and delete myself from the universe. No, actually, I'm fine and I'm just going to say it again more accessibly. Life is good.

The problem is

I am very political about disability because politics has saved my life.

I have never been able to finish writing about going to a doctor this winter. I sought out learning testing because I was really confused by how slow I felt and how hard it was for me to do schoolwork, Activities of Daily Living, and other things. I seriously thought some kind of huge mass was missing in my brain because I just was not happening. I considered suicide because my friend gave me the relatively simple, but unexpected, task of taking his car to the gas station when I was driving it. I started crying and begging myself to drive into every truck I passed on the road, because I COULDN'T GO TO THE GAS STATION, it was too hard.

So, the doctor diagnosed me with some learning disabilities which aren't very severe and which I'd already been diagnosed with before. And he kept telling me I was really smart, something I'd also heard before. This increased an already very suicidal winter and early spring to fever pitch. I cried every time I met with him. I wanted a brain hole. Sometimes I still do. What is with the gas station? Why can't I just go there?

I don't know.

So, the worst thing about meeting with the doctor was that he didn't believe I had autism. In addition to getting my learning testing, I was also hoping to get a re-diagnosis of ASD because I hadn't had one in 8 years and I figured I might need more recent documentation at some point. Unfortunately, the doctor was very well versed in learning disabilities, and didn't know very much else about bad brains. Every time I talked to him, I would make the mistake of referring to myself as having autism, and there would be this little record-scritching sound.

"Autism! I thought we agreed to throw that out!" (in the same tone of voice he used when telling me I am smart)

Then he would explain to me that if anything he might be convinced I had Asperger's, not autism, because it is strongly associated with one of the learning disabilities I had (even though I had very good eye contact, he said). Every time he said this, I would explain that Asperger's, PDD-NOS, and Autistic Disorder are all on the autism spectrum, and when I referred to myself as having autism, I was just using the word that my disabled friends and I used about ourselves, which was in fact consistent with how the psychiatric community was coming to classify people, since the DSM 5 would have only the autism spectrum and not three separate diagnoses. He and I had this conversation probably six times, every time I met with him. The final time, I actually started yelling. "THERE ARE THREE DIAGNOSES THAT ARE CONSIDERED AUTISM SPECTRUM DISABILITIES. WHEN I SAY I HAVE AUTISM, I JUST MEAN THAT I HAVE BEEN DIAGNOSED WITH TWO OF THOSE DIAGNOSES IN THE PAST, AND I BELIEVE THOSE WERE CORRECT DIAGNOSES. I AM NOT THE ONLY PERSON TO REFER TO THESE THREE DIAGNOSES AS 'AUTISM.'"

"So that's the new thinking?" he said.

I began crying (again).

Now I know what you're thinking. Why didn't I just say Asperger's because that was a label he obviously would have been more likely to accept, understand, and associate with someone as "smart" as he thought I was? Why did I need to have this fight every time I talked to him?

I don't really know. I can't send letters if I think even one word is arrogant, shifty, dishonest, or undeserved (you can imagine this makes it difficult to apply for jobs, as I usually become really unhappy and take on some less urgent project to distract myself). I can't stop saying I have autism if that's what I think I have, and if having it has helped me define myself in a way that has radically changed for the better how I live my life.

I was not diagnosed by him IIRC, and I am not seeking rediagnosis now. Diagnosis of autism would require social impairment. Here's some stuff I could say:

I don't have a lot of friends.
I don't lose friends in fights more than anyone else, but I seem to grow apart from them really easily.
I have no romantic or sexual history to speak of.
I often don't fit in very well in the workplace.
I was bullied a lot when I was growing up.
I had few friends or no friends most of the time, from the time I was about twelve to when I started college.

These are actually true facts, but I don't consider myself socially impaired.

Here are two things that piss me off when other Autistic people argue with me and tell me that social skills DO exist:

1. when they tell me (admittedly, because I'm very confrontational and force them to say it) that they think I do have social impairment. I guess that this is really just a huge trigger/mental block thing where to me it means something much worse than what they mean, but to me, when someone says this, it's like they're saying that I have a false view of the world, and that makes me very upset.

2. when they tell me that I need to acknowledge that some other Autistic people are very different from me and have really different impairments from mine, and that even though my impairments aren't related to socialization, some people's are.

Number 2 makes me start thinking, what the fuck is autism then? Can autism actually be THAT different? But I will bite. Let's say that a few different disabilities look similar enough to have all been categorized as autism, and let's say that while all of my isolation and conflict with people blah blah DOESN'T come from social impairment, but just comes from other parts of my disability and/or me as an individual, other people with autism who have similar experiences with people actually DO have those experiences because of social impairment. The books don't describe me, but they do describe them. In fact, the DSM definition of autism describes them, and it doesn't describe me. So, the DSM and mainstream professional thought about autism at least starts to describe one group of people with autism, but doesn't describe me at all, and if I went to a psychologist and started telling them about what I consider to be my disability--i.e. cognitive and emotional problems and the relationship between those two things--it would take a miracle for them to diagnose me with autism. Because I have the kind of autism that's less real than the other kind.

So, to me, when someone starts saying, okay, well YOU need to understand that other people do have REAL SOCIAL PROBLEMS and REAL SOCIAL SKILLS DEFICITS, even if YOU DON'T, I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. No wonder I tend to prefer to call myself bad brains and insane in the membrane and Magikarp zombie waste of space. It seems obvious I belong in the Autistic community, and I even have that treasured thing: a fairly early diagnosis (from 1998, when I was nine), but I know that I would be said to have "grown out of it" or been misdiagnosed, by any reasonable medical professional--I know it can be taken away any time, and sometimes I feel that by being inseparable from the theory and values that prove to me I have a right to exist, I am making it easier for people to erase me.

I am saying this because I want to apologize to you, and probably other people I've forgotten doing this to before. It isn't you, and it's probably not logical. I panic and start hitting out.

Crazy House Announcement

2011-09-04T23:10:00.010-04:00

Crazy House is going to be a website that houses some art, or pictures and videos of art depending on the form of the art. (Art is something you make, such as sculpture, music, stories, film, television/video series, zines, food, a building, an installation, graffiti, a play, a musical, or a magic trick.)

Crazy House is the name of a book by Henry Darger, an outsider artist. Outsider art is a hard-to-define category, but many people labeled as outsider artists have psychiatric or developmental disabilities.

Crazy House the website is an imaginary house where you can have your own room. Which is to say that you could apply to be hosted on the domain which I have yet to buy, and then you could make a site for your art. All of these sites would be linked to from the main page, and would make up the Crazy House.

It’s perfectly worth asking why this is necessary when there are so many places on the Internet where you can upload and share art. I’m not really sure why I want to make the Crazy House, except that I like the idea of sharing an imaginary house with other people instead of just having a lot of usernames on different huge websites. I also like the idea of an art space that is somewhat centered on disabled identity.

I would like to buy the Crazy House domain with other people for two reasons. First, it would be cheaper, and second, I would like the Crazy House to be something that isn't dependent on one person, but on several people. If anyone is interested in buying the Crazy House domain with me please email me at awf.vivian at gmail (I'm hoping to figure this out by November or December).

If anyone can't or doesn't want to be part of buying the Crazy House, but would like to room in the Crazy House, sit tight. Hopefully I will be back in November or December telling you how to do so. And please signal boost.

Amanda

About Bad Brains

2011-08-26T16:35:00.001-04:00

At one point, another person diagnosed with autism asked me why I would refer to myself as "bad brains" and if this was a joke. It's not a joke at all. The most obvious explanation I can think of for calling myself bad brains is that I'm committed to being as negative about disability as I care to be. I don't necessarily feel like people who talk about their disabilities positively are just characterizing themselves that way for political reasons, but that's not the way that I'm made. Maybe it's even part of my disability that nearly everything is the end of the world, and at the same time nothing is. It would be completely out of character for me to talk positively or even neutrally about being disabled, and I don't think I should have to do that to have my opinions about anti-ableism respected.

But this motivation--reclaiming negativity about disability--actually isn't even the major appeal of a bad brains identity. One of the big things I love about the phrase bad brains is that it can be used to indicate a lot of different things, and one of those things is a flaring up. It can be really hard to get respect from other people, or even feel that you deserve respect, if you don't have a disability that looks the same every day. When you are suddenly slow (or suddenly sad, and that makes you slow), or suddenly so angry that you can't tolerate doing anything slightly difficult or stressful, there isn't really anything to call this to try to explain why you're making what seem like very silly and strange decisions in an attempt to look after yourself, or why you can't do the things you can usually do. So I like to call it bad brains, as in, "I'm having bad brains today," or, "My brains are too bad to do that right now" or, "Sorry but my brains are about to go bad."

This isn't necessarily something that everyone understands, but some people pick up on it, some people in my life have learned what it means and, most importantly, it helps me explain and justify things to myself. It used to be completely unbearable because it felt unexplainable and overwhelming when things just went different for me and became much harder or more painful. I felt lazy and weak. At least now I can think of it as kind of like having a cold.

In addition to being really catchy and practical, bad brains is my identity of choice because it is so vague. I kind of hesitate to say this because I don't want to sound like I have some problem with having autism or that I don't identify with the Autistic community--obviously at any point when people with autism are being counted I will be specific and say that's what I am--but on a practical level and I guess a loyalty level, I don't really feel that AUTISM AUTISM AUTISM is the way to describe me or anyone. I'm just feebleminded, bad in the brain, slower than molasses going backwards, batshit, a lid-flipper, too stupid to live, NOS, awesome fuck-you surprise. Walking corpse. Magikarp refuses to evolve.

Autism is a big word, and I think if I attempted to say that what I experience is the definition of autism, that wouldn't be any more acceptable than people saying autism is a social disability. A lot of the people I feel really close to were diagnosed with autism--at the same time so were some people I couldn't feel less close to--so maybe let's just say that autism is a big word that describes what some disabled people look and act like, more or less, especially when they're young. I know this seems like a really aggressive rejection of the label, but I feel so extremely not represented by what professionals say about autism, while also being similar enough to a lot of other people who were diagnosed with autism that I don't think the classification is meaningless.

When I meet Autistic people who resemble the Asperger's stereotype (this is mostly visible in how they converse), I feel a certain sense of attachment and relief. But it's not any more than I would feel if I met someone with an intellectual or psychiatric disability, or even if I met someone who wasn't diagnosed with a disability but has a lot of similar stuff going on. In fact, in some cases I can feel a stronger sense of attachment and community (in terms of what we are like, and what our disability is practically like) with a person who belongs to one of the other groups than with a person who belongs to the group that's supposedly my group. It's true that all the people I'm close to online have autism, but that isn't the case with the disabled or disabled-ish people I'm friends with in real life.

I like to say bad brains because I think it is kind of a way of being more practical by addressing exactly what is going on. My early life doesn't really matter right now, what matters is what I have to manage and what I'm experiencing day to day, which is bad brains. It also matters what I have in common with other people because if we're dealing with similar things we can help each other. That "what" is bad brains, not autism.

Bad brains is not your medical history. Bad brains is just a fact.

why is arguing with you the only self-advocacy that counts?

2011-08-17T21:36:00.011-04:00

I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.

I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.

The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.

First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.

But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.

I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.

Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.

Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.

Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:

*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments

All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?

Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.

So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.

How Indistinguishability Got Its Groove Back, part 1

2011-08-16T10:55:00.004-04:00

My first writing about disability was about an ABA school that I interned at when I was 20, which was a very ableist and passing-obsessed environment. Being in that environment I was forced to confront things I'd tried not to think about.

I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.

Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.

It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.

2011-08-09T20:00:00.002-04:00

So I'm back from working at camp and I have been feeling more and more that I don't want to be staff for people with DDs--I was going to say more on this later, but why don't I just tell you about it now. I wouldn't pass up an opportunity to work with people with DDs if it fell into my lap (I wouldn't pass up any job if it fell into my lap obviously), and might volunteer if I can find any easy/convenient way to do it. I want to return to camp every summer for as long as I can, because there are some campers I consider friends and can't have a long-distance friendship with because they can't write/read/talk on the phone. But I don't particularly aspire to have another job with that population. What I'm thinking right now is that I'd like to do personal care stuff in a hospital, which might include working for some people with DDs, but wouldn't primarily be defined that way. It is the definition that really gets to me.

I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.

Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.

I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.

Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.

There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.

Because of that my old ambitions can never really work out.

2011-07-16T17:03:00.003-04:00

I can't wait till I have a chance to synthesize my two email addresses so I don't have to go to as much effort to post here. I can never really dash off posts here, and just end up posting things on tumblr that are too long for tumblr and that I don't really edit the way I would if I was posting them here. Posting here has started to feel like a Big Deal where I have to write something well-organized.

This may be selfishness as a staff person, in fact it totally is, but I think the level of intense surveillance I'm required to keep up working at this camp is a little bit ridiculous. Someone I know recently got threatened with being fired because she forgot two of the campers she was supposed to bring to the pool--obviously forgetting to bring someone to an activity is bad, but I doubt she would have gotten in much trouble if she'd been with the campers and just lost track of time or forgot they were supposed to go somewhere. I think the really bad thing about what she did is supposed to be that she left them unsupervised, but they're two teenage girls with intellectual disabilities, not convicted felons. I'm sure their parents leave them home alone just as the parents of most teenagers do, but when they're here, suddenly we're supposed to be treating them like very young children.

And I mean very young--I volunteered in a mainstream first-grade class this spring, and I was surprised every time the teacher allowed a 6- or 7-year-old to go walk to the bathroom alone, because I'm so used to the idea that IF YOU'RE RESPONSIBLE FOR SOMEONE, YOU HAVE TO ESCORT THEM EVERYWHERE. Even adults with disabilities who live pretty independently and definitely walk to the bathroom by themselves when they're not at camp.

It kind of reminds me of the way Danny's teachers usually acted like there was something dangerous about special interests, but for his birthday they let him have a party totally focused on his special interest, and allowed him to talk to them about it. It was like they could hold two contradicting beliefs at once; there was a part of them that thought his special interests were cute and perfectly acceptable, but when they were doing their job, they thought the opposite. The rules about how to treat campers seem to contain a similar paradox, at least in their application. We know lots of them can do this stuff on their own. Most of us would say, if asked, that disabled people deserve to be treated "just like anyone else." But we don't treat them like anyone else at all, and if another counselor doesn't stand in the bathroom while their camper is taking a shower, we all cluck about it. We don't act like it's just a deviation from policy, but like it's actually dangerous.

I want to come back to camp next year because so many of the campers are really special to me and given location, taboo, and different writing/Internet abilities, we can't really be good friends outside of camp; but it's hard for me to imagine I will come back, because it's such a time-intensive job that I rarely get the chance to even read books or write posts or letters.

I keep daydreaming about trying to get a job at one of the two camps I enjoyed going to when I was a teenager. One of them is CTY, which is supposedly an academic camp for kids with high test scores, but is functionally a social space for kids who are different from their classmates. In my group of friends there, almost none of us had any friends at home. The other camp is a farm camp where the campers work on the farm and do group therapy together; when I went there, there were a fair amount of kids who had learning/developmental/psychiatric disabilities and had come to camp because someone decided it would be good for them, but there were also a lot of kids who had no disabilities and just enjoyed the environment. And, importantly I think, you didn't always know which was which. I've written some snarky things about this camp but I really admire what they do, ultimately.

I keep getting excited about the thought of applying to work at CTY or farm camp, not just because they're places I like, but because, oh my gosh, the freedom of being allowed to let campers go to the bathroom by themselves and only closely monitoring them if they actually need close monitoring and support! But then in the same breath I can't not just be staff, I can't help thinking how ridiculous it is that once you put people under a certain label all these new potential dangers emerge, like, THE DANGER OF WALKING BACK TO A CABIN ALONE, and, THE DANGER OF PUTTING YOUR HAND ON THE KNEE OF THE BOY YOU HAVE A CRUSH ON, that you must be protected from by your staff!

(On a totally different note, I've been meaning to link this since I read it, their parents are fantastic.)

2011-07-16T16:31:00.000-04:00

I just found this (Let Me Be Played) and I really needed to read it. It's weird to realize I'd gone through all this before.

The guy who triggers/stresses me at work is leaving due to a family emergency. I think he will think of this camp as a place where he didn't get along with most of the other staff and they gossiped about him. I don't think he will think much about the actual work he did.

The other night, he was standing in the bathroom drumming loudly on a wall, presumably to be funny, while waiting for his campers to finish getting ready for bed. I said, "Gosh you're just like my campers from last session, they were always banging on stuff and you always think someone's knocking on the door, but it's just them."

First session my campers were 10, 11, and 12; two of them had autism and the 11-year-old had a few developmental and emotional disabilities. The two older kids, especially the 12-year-old, RL, would constantly bang and drum on surfaces. It wasn't necessarily because they were angry or anything, it was just what they did. RL was really physically affectionate so sometimes I'd suggest he bang on my arm instead, and he would start gently tapping it, which was a bit quieter.

Anyway, I said this to my coworker, and he goes, "I think your campers just did that to scare you."

I know this is only one sentence, but did it ever manage to upset me. I spoke to Zoe after and she kindly helped me pull out all the ways this SUCKS:

1. everything a disabled person does must have malicious intent
2. people with autism don't just sometimes bang on stuff or do other repetitive behaviors, just because it's how they are
3. I'm some kind of pussy (my word, not hers) who's afraid of people banging on walls??
4. for some reason, I'm the kind of person that some very nice little kids would want to scare, probably because...drumroll please...I'M NOT GOOD AT MY JOB BECAUSE I DON'T WANT TO CONTROL PEOPLE

Oh, gosh. All I should ever want is for people like him to disapprove of me.

bad brains making bad decisions

2011-07-04T05:00:00.010-04:00

(from bad brains making bad decisions)

First off, it's really hard not to write about sex because:

1. The other day I read all the comments in an article about a British guy with an intellectual disability who had been ruled by a judge not to be qualified to have sex. Some of the comments were by people who had worked with people with ID, and were saying things like, "When people with ID have sex, they can't handle it emotionally and they go from partner to partner and get very upset."

2. When I was 15 or 16, I read this livejournal flamewar that I'll always remember. Basically, a woman who was into BDSM, who had kids with autism, suggested that people with autism shouldn't be doms because they wouldn't be able to tell if their partners didn't like what they were doing. Other people said that if this was an issue, the couple should use safewords; the woman replied that she didn't believe in safewords because you should be able to tell how the other person feels.

What do these two incidents tell us (besides that parents and staff are assholes and should never talk)? Well, one thing that stands out to me is that both people talking are implying that there's a standard everyone should meet in order to be able to do a certain thing. If you want to have sex, you have to not become distraught by it, or be reckless in entering into affairs and relationships. If you want to be a dom, you have to be able to tell if your partner doesn't like what you're doing, without them saying so.

But...for some reason, this standard is only being applied to people with disabilities.* No one is calling for immature and overemotional non-disabled people to be banned from having sex, and presumably the woman who was so concerned about autism and BDSM doesn't go around telling non-disabled couples that they shouldn't be doing BDSM if they happen to not be able to read each other's body language.

(*It should go without saying that I don't think either of these judgments about developmentally disabled people is true. But even if they were it still wouldn't be fair.)

By the way I was semi-joking because now I'm going to talk mostly as a staff person, oh noes. During training for my job at summer camp working with adults, we were being given a talk about making sure guys shave, or making sure you shave them if they can't do it. Our boss said, "Nothing makes me angrier than seeing a person with a disability walking down the street with a stain on their shirt and stubble."

But nothing makes me angrier than the idea that if a disabled person doesn't look conventionally put-together, that is a PROBLEM and they're not receiving adequate support.

Let's say a disabled guy gets out of bed in the morning and decides not to shave because he's lazy, or because he thinks stubble looks cool, or because he only shaves when he's going to be kissing his girlfriend that day (haha, double panic, disabled people who are lazy AND kiss). He puts on a stained shirt because even though it's stained, it has his favorite movie character on it, or it belonged to his brother who he really likes, or it's comfortable for someone with his particular sensory issues.

All good decisions. Well, not necessarily good decisions. I personally think stained clothes are 100% gross and would never wear them. But these are decisions that a non-disabled guy might make, and no one would seriously respond with, "Someone ought to be taking better care of him." Yes, this ties into the privilege checklist.

Dave Hingsburger made a post last week called Offering, respecting...a huge difference, in which he talked about the difference between "offering choices"--i.e., choosing the set of choices a person can choose between--and respecting any choices a person makes. "Relationships, yes ... kissing, no; movies, yes ... boozing, no; celery, yes ... smoking, no." To me, saying a person can either be cleanshaven or have a beard is offering choices; saying a person can have whatever kind of facial hair they want is respecting choices.

As I was thinking about this I started thinking...well, for me as a staff person there's probably a limit. I mean, if someone never wanted to brush their teeth I would make that very difficult for them. Which I was thinking made sense, because brushing your teeth is just...well, it's not just about how you look, you have to do it.

But then I remembered when my friend found out that her non-disabled boyfriend hadn't brushed his teeth in weeks. Her reaction (and mine) was, "That's gross," but neither of us thought that someone else should start making him brush his teeth. I think there's a very small number of things that non-disabled people could do to get the reaction, "Someone else should be taking care of you because your actions are so incorrect." Most of the examples I can think of have to do with not eating, self-injury and suicide attempts, and addictions.

One of the commenters on Dave Hingsburger's post did bring up the issue of people having preferences in the short term that don't fit into their long-term plans, which I think is important. I just feel weird about brushing teeth now.

some disabled staff person fragments and facts

2011-07-02T22:39:00.004-04:00

So I’m working at the summer camp I worked at last year, which is a sleepaway camp for teenagers and adults with developmental disabilities, and it’s reasonably progressive and all that. I mean, very, probably, I should be grateful.

But Disabled Staff Person is just hell. Always has been always will be.
2.
I’m crunched for time and if I try to write a really long well-thought-out post about why this is, I’m afraid I might never finish it, so I will try to outline this briefly. I think it’s really weird that heterosexism and cissexism are commonly used words but that there seem to be no equivalents for other kinds of oppression. On the one hand it bugs me when people use words like heterosexism and cissexism about situations that are clearly about hatred of ssa and trans people; I agree that words to describe oppression ending in -phobia are problematic and should probably be replaced, but words like heterosexism imply the problem is about normativity and kind of erase the impact of actual hatred and violence and discomfort and fear.

But normativity also blows, and one of the most frustrating things about it is something that’s also one of the most frustrating things about being disabled in general--the feeling of not just pain but being sure that your pain isn’t really so bad and shouldn’t even count.
3.
So during training for camp, we learn about disabilities obviously, and we sit there and someone goes, “So does anyone know someone who is autistic? What can you tell us about autism?” and someone else goes, “Well, I was an aide for a little girl with autism and they don’t like to be touched, like they really hate it.” This one guy even says, “Well, all the autistic people I know really hate the taste of ground beef.” Both these things are not at all universal and I find that the stereotypes about touch, in particular, can lead to a lot of problems. But even if they were saying perfectly accurate things, this is the most uncomfortable room for me to be in. I learned about autism not because I saw it, but because it was never outside me.

I can’t count how many times I have been subject to this kind of assumption, either in an able-normative group like in the above example or in a comment specifically directed at me--”oh, my daughter is interested in autism just like you are,” or the classic “good for you, it takes a special person to do that kind of work.” Clearly I cannot be interested in autism as something to “get into,” as it’s just always there for me to look at or try to escape; and I’m no more special as a counselor for disabled campers than non-disabled counselors are at a mainstream summer camp. But no one really considers that they might be directing their standard-issue comments at someone for whom what they’re saying doesn’t really make sense.

Sometimes I even get these comments when the person does know I have autism and probably would understand if forced to confront it that what they said is inconsistent. People also perpetuate able-normative environments when they know I have autism (like my professor who asked the class if any of us knew a person with autism who was in college). I guess they keep those two clumps of thoughts, “Amanda is disabled” and “disabled people are Other,” carefully spooned on opposite sides of a plate. The clumps never touch. They don’t change.
4.
I believe you always regret telling. There are exceptions, like Liam and Noah, but definitely no one I have worked with or for. Obviously everyone knows horror stories about people who were suddenly considered unfit for a job simply because their superiors found out they had a stigmatized diagnosis, but being stiff upper lip I’ve never had occasion to experience this. What happens to me is quite small: I work out that someone will be okay, and I tell them, and it seems okay; or I have worked out that someone will be okay and I consider telling them because I feel close to them or I think it would be in some way relevant to something we’ve talked about. Eventually, through the accumulation of offhand comments and reactions I realize that while this person is more okay than most non-disabled people, the chasm between their outlook on disability and a disabled person’s outlook is, well, not massive, but no less galling for that.

If I’m lucky, the first piece of evidence I get is the person’s selective memory. I mention that I have autism and they act all surprised even though I already told them. Or I make a comment that has certain implications when made by a disabled person, and they respond as though it was made by a non-disabled person. This is kind of a cool situation because just as I learn that the person isn’t really so “okay,” they tell me in the same breath that they don’t remember I’m disabled--so I can just slip back under the radar, fuck yeah.

Or if I’m lucky, I still haven’t told them and then I hear them say something about how “fascinating” and “textbook” a camper’s stimming is. (I see your “Aww but she’s in school, that’s just how people act when they’re in school” and raise you a “I’m not saying she’s a bad person but would you want to be around someone who treats the way you move like something on the Discovery Channel?”)

If I’m not lucky, someone knows and I know they remember and accept it as a consistent part of me which is swell, but then I start realizing that they have a certain lack of faith in the capacity of disabled people to perform tasks and come up with their own ideas. One time this happened with someone I worked for, and the chill of knowing that despite their stated anti-ableist beliefs they probably wouldn’t have hired me if they’d known made me sure I never want to tell an employer about it again. After all someday I’ll need a reference.
5.
You probably know this if you know me but for some reason I didn’t put it into words until a few days ago--my most surefire trigger to get in a state (crying, mania, self-injury/being suicidal) is being made to feel that my disability isn’t real, isn’t visible, or isn’t recognized by other people. In fact it’s hard for me to remember if I’ve had any states in the last year that didn’t have that at least as an aspect.

Last week one of my coworkers, who I had until then considered a friend and vice versa, told me that he thought campers who had meltdowns were “brats who needed discipline.” After unwisely plodding through a conversation about this topic, I ended up lying in bed for hours sobbing and thinking about stabbing myself with the scissors in my backpack (which I only didn’t do because I was sharing the cabin with three sleeping disabled kids). At maybe two I wandered outside my cabin and stood next to one of the camp bathrooms and called my best Autistic friend, who had to deal with my speech which was kind of in pieces. I was upset because what this guy had said to me had hit my trigger point, but also because I couldn’t talk to other staff about it. I mean, I did. I’ve contributed to this guy being unpopular by repeating his comments, because I really wanted to say them and have someone else say they were bad--and everyone did, but for other staff it’s not bad on the same personal level, it’s a professional disagreement, and ultimately I’m just one of many apparently non-disabled staff getting into some non-disabled staff drama.

Whereas for me it’s not about disliking him in a general sense, but actually feeling terrified and threatened; and almost getting sick from the distance between how kind and friendly he was to me (someone he thought wasn’t disabled) and how that kindness and gentleness apparently gets lost when he looks at a kid who has meltdowns or wanders or doesn’t listen to him.

Counselors have been met with and given a talk--no more gossiping about each other, and if we criticize each other we should do it directly. We’re supposed to move on from the drama. (Who is the we that is going to move on?)

That’s all for now. Fuck my life.

the violence of nerdiness

2011-06-27T05:00:00.006-04:00

(from Fear Claws)

more on this (about Chase from Runaways, some weak spoilers)

I was also thinking that Chase’s lack of nerdiness/intellectualism/intelligence (including the facts that he isn’t part of a subculture, doesn’t do well in school, and is often kind of dense and spacey) is an extremely important facet of his character, and that makes it especially unfortunate that Joss Whedon retconned him as nerdy. The conceit of Runaways is that all the main characters have parents who are a different type of supervillain, and when the kids find out, they team up to fight their parents. Chase’s parents are “mad scientists,” obviously the most intellectual type of supervillain (which Whedon himself portrayed as a hero in Dr. Horrible’s Sing-Along Blog, with the villain being a conventional hero, Captain Hammer, who is a stereotypical dumb jock–self-centered, stupid, sexist, and a bully of the nerdy Dr. Horrible). Although, like all the Runaways’ parents, they do evil with the goal of providing for their children, Chase’s parents are physically and emotionally abusive, and they are the only set of parents who are like this.

Although Chase fights with his parents and behaves rebelliously, he is written throughout Brian K. Vaughan’s run as having internalized the lessons he was taught by their abuse–basically, that he deserved to be abused because he wasn’t a good person, misbehaved, or was otherwise unsatisfactory. An amazingly painful moment, toward the end of BKV’s run, is Chase’s realization that he is “innocent” after all. (Amazingly painful because Chase wants to sacrifice an innocent soul to bring his dead friend back to life, so his realization causes him to plan his own death.) Chase’s parents frame their abuse of him in terms of “we’re smart, and you’re unsatisfactory and don’t know what is good for you, because you aren’t smart/intellectual.”

I started thinking about Chase again because my original post was called “isn’t that a cliche?” which is a quote from the first page Chase appears on. During an argument about Chase’s grades, his dad hits him and tells him he is a “dumb jock,” a “cliche.” Chase responds, “You’re a nerd who punches like a girl–isn’t that a cliche?” Which I think is really interesting because if you do read Chase’s dad through that lens, as a nerd who was bullied as a kid and wasn’t physically able to stand up for himself, and the violence that grew in him became his supervillainy…doesn’t that serve as a frame for his parenting? Does he have a childhood hatred of “dumb jocks,” which he takes out on his dumb jock son? It doesn’t matter if you “punch like a girl,” after all, if the person you’re punching is young and dependent on you.

So can I just say how much I love Brian K.Vaughan? He clearly isn’t mainstream or anti-nerd, as many of the positive characters are nerdy, but he also sees the potential violence in the idea that nerds are better than other people. In Y the Last Man he does a great job of portraying very diverse characters and the same is true for Runaways.

(The reason I’m categorizing this post as “disability” is that I think some disability culture, primarily Autistic culture, has this kind of nerd violence in it. Basically, autism is associated with nerdiness and intellectual achievement, and the people who hold this association think that intellect should redeem autism from the stigma of disability, or even the word disability. People who feel this way are prevented from experiencing solidarity with people who have autism but don’t have high intellectual achievement, or have intellectual disabilities, and they are prevented from experiencing general disability solidarity. Which is a huge problem in my opinion, and very upsetting.)

real time post #1

2011-06-25T13:37:00.000-04:00

but not a super composed post, just a reply to a comment. Normally I'd just respond in the comment thread obviously, but since I've had poor access to the Internet I have spent a lot of time thinking about the comment and have a lot to say.

Sarah Abraham-son is a person who writes a blog called Aspies on TV where she lists TV and movie characters who she thinks have "Asperger's." Several months ago I made a comment here expressing why I didn't agree with the blog, and she recently came across the comment and left her own comment on one of my recent posts. This is Sarah's comment:

Hi Amanda:
I just read this, I'm not sure how we disagree, based on your comment on my blog. Of course people with ASDs commonly have EF issues and mood issues, but these are not core features and not part of the diagnostic features, but often more disabling than some core features. Many of the fictional characters I described do have these features, eg. David Brent in The UK Office (EF issues help him be bad at his job, mood issues develop later when he's fired). This sort of issue though is not very funny, and the aim of fiction is firstly to entertain in some way, so not standard in comedy characters with ASDs.

Hi Sarah. Like many Autistic people and allies, I don’t consider the stuff you consider to be core features of autism to be core features of autism. I’d recommend reading my “social skills don’t exist” series to better understand my perspective on social skills being socially constructed.

As for executive function and mood not being part of the diagnostic critera for autism spectrum disabilities, that’s neither here nor there as the DSM kind of blows in this department. Also, the social skills thing is really neither here nor there either, as a lot of of the characters you claim are “Aspies” don’t even have the kind of social problems that verbal people with autism usually have, but are insensitive or odd in any number of ways. I think fictional diagnostics is fun and everything, but to pick out any character who doesn’t fit in socially or acts rude, without taking the time to think about the specific reasons why some verbal Autistic people don’t fit in or are perceived as rude, is to thoughtlessly perpetuate the very popular and inaccurate belief that all types of insensitivity and social awkwardness equal “Asperger’s.”

Not really clear what you mean with the entertainment value thing--I can think of many humorous portrayals of people with mood disorders and other psychiatric disabilities (although I don’t agree with a lot of them obviously), and cognitive disabilities including intellectual disabilities and Alzheimer’s. Just on a basic level, I tried to serve myself corn in a water glass the other day and all my campers thought it was really funny. Probably much more funny than if I said, “Wow, you have ugly hair” or whatever I’d be saying if I was an autism pop culture character.

Furthermore...come on. Funniness is not an excuse for portraying minority groups inaccurately or disrespectfully--not that portraying a minority group was even what most of these TV shows and movies were trying to do.

Fallacy Week: Form Over Function Fallacies

2011-06-24T05:00:00.003-04:00

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.

1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.

Rebuttal:
I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will. Anyway, it's the end of Fallacy Week! Go forth and argue.

Fallacy Week: Undisabling Fallacies

2011-06-23T05:00:00.009-04:00

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

Undisabling Fallacies

Undisabling is when someone is speaking as a person with a disability, and you convince them that they don’t have a right to do that. I’m not going to go over these fallacies with a fine-toothed comb because a)there are tons of them, and b)they often contain elements of the Harder Fallacy, the Shocking Behavior Fallacy, and the Suddenly Specific Definition Fallacy–so they should be pretty easy to figure out.
I should probably mention that a lot of the other fallacies are pretty innocent and are often used by people who don’t have these conversations very much and aren’t really thinking about what they’re saying. Undisabling fallacies tend to be used by people who are very very involved in these issues, and are really vicious.

1. Mary tries to convince John that his disability either isn’t real, or isn’t severe enough for him to have an opinion. She does this by trying to make him feel guilty by telling him something bad that happened to someone else with the same disability. For example, if John has muscular dystrophy, Mary could tell him about someone she knew with muscular dystrophy who died when they were very young. John is set up as seeming to claim a bad experience that he didn’t have. He feels bad. This is the Suddenly Specific Definition Fallacy, and is closely related to the Shocking Behavior Fallacy, although it’s not an exact application.
2. John says something that goes against disability being the Super Sad Worst Thing–probably it was about Thomas the Tank Engine, knowing him. Mary takes this to mean that John is happy and doesn’t see his disability as a problem at all; therefore, she says, his disability must not be very severe; therefore he doesn’t understand. This is both the Harder Fallacy and the Suddenly Specific Definition Fallacy.
3. A really souped-up version of #1 where Mary tries to pick a behavior that she thinks will really gross John out, to the point that he’ll get super confused and never say anything about disability ever. I’ve seen some people in the Autistic community use the phrase “You don’t smear feces!” as an inside joke because it is so consistently used in this type of fallacy.
4. John is being insensitive to Mary’s very negative feelings about disability by stating his own feelings and opinions, which of course she takes as being very positive because they are not like hers. Kind of Harder Fallacy-ish. Also kind of ties into what I’m about to describe. Since I am posting this in pieces, you'll have to wait till tomorrow if you're reading this on ISE!

Fallacy Week: The Contest Fallacy

2011-06-22T05:00:00.007-04:00

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

The Contest Fallacy

JOHN: It makes me upset when my parents always say that they wish I wasn’t disabled.
MARY: But that’s totally legit. It limits what you can do with your life and it means things are going to be harder for you.
JOHN: I mean, I get that, but how would you feel if your parents were always saying they wish you weren’t a woman because things are harder for women?
MARY: That’s so stupid, John. Being a woman and being disabled aren’t the same thing!

or

JOHN: I’m not saying that parents don’t have a right to say if they’re upset about their kids being autistic, but, like…it’s basically like if every time there was something on TV or in a magazine about gay people, it was gay people’s parents saying that they wish their kid could be straight and how depressed they are.
MARY: Can’t you explain how you feel without doing Oppression Olympics? People try to make their kids straight all the time. Haven’t you ever heard of Love in Action?

Rebuttal:
In both examples, John tried to explain how he feels about something as a disabled person by replacing disabled people with a group that Mary belongs to; but Mary either turned it into a contest between the two groups, or thought that John was trying to have a contest.
The first example is easier to take apart because it’s obvious how much of a subject change there is from John’s analogy to Mary’s response. John was trying to explain that your parents can imagine an easy life for you to an extent that makes your real life much harder. Mary responded as if John was saying that because women and disabled people both have harder lives, they are exactly the same.
The second example is more tricky to discuss because it involves an accusation of Oppression Olympics. Oppression Olympics basically means that you say that your minority group has it worse than another minority group. Sometimes people do it intentionally in a conflict, but other people just have a lot of trouble understanding that the problems of the group they’re advocating for are not worse than the problems of everyone else in the world. Hence the astonishingly self-centered, and astonishingly common, declaration that whatever prejudice you care about it is “the last acceptable prejudice.”
Basically, Oppression Olympics is really annoying. You don’t want to do it. But was John doing it? Let’s think back.
Did John say that gay people aren’t oppressed?
Did he say that people with autism are more oppressed than gay people?
Did he say that gay people’s parents never try to make them straight?
No, he didn’t say any of those things.
He did state that the majority of media about gay people is not about parents wanting to cure their gay kids, which is true. Such a statement could be used in Oppression Olympics, if John was trying to argue that he is more oppressed than Mary–but in fact, rather than trying to “win” by convincing her that their oppressions are on different levels, he was trying to explain his experience in a way that would be accessible to her through her experience. It’s perfectly likely that his intentions were to connect with her, not to be malicious and deny her experience as a gay person.
I do think this can be a little dodgy, and the best way to make this kind of analogy is by comparing two groups that you belong to. However, not everyone can do this; and while John made a risky comparison, he was not wrong.

Fallacy Week: The Shocking Behavior Fallacy & The Suddenly Specific Definition Fallacy

2011-06-21T05:00:00.002-04:00

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

The Shocking Behavior Fallacy

MARY: My nephew Ralph has autism and it’s really sad. He insists on watching Thomas the Tank Engine every day, and he’s sixteen.
JOHN: Why is that sad? There’s nothing inherently wrong with an older person liking things that are aimed at kids. I feel like in our society, people label a lot of things as problems that aren’t actually problems.
MARY: That’s really insensitive. Ralph bites himself so badly that he has to go to the hospital.

Rebuttal:
John didn’t say that it’s not a problem to seriously hurt yourself, nor did he say that Ralph doesn’t have any problems. But Mary reacted as though he did say that, and now John is knocked off balance. He wonders, did he say that? How can he explain that that has nothing to do with what he was saying? Is there anything he can say now to avoid giving the impression that he thinks self-injury is okay?
In the Shocking Behavior Fallacy, you can use a shocking behavior to excuse something unrelated that you did to or said about the person who has the behavior. The fallacy functions by changing a very specific statement to a general one. Mary changed John’s specific statement–watching Thomas the Tank Engine is okay–to a very general statement–everything Ralph does is okay. Now she can prove John wrong by giving an example of something Ralph does that is not okay.

(Fun fact: This is actually one of the most dangerous fallacies in use. By equating one thing a person does with everything that person does, it creates a class of people about whose treatment no one is allowed to complain. Let’s change the example a little and say that Mary is a staff person working in an institution, and every time she sees Ralph trying to watch Thomas the Tank Engine she takes points away from him, which means that he doesn’t get to go on day trips. John thinks that Mary is micromanaging Ralph’s choices in an abusive way. Mary responds that Ralph has to be monitored closely and dealt with harshly because his problems are so severe; he bites himself, remember?
Professionals can fall into an inverse of the Shocking Behavior Fallacy, where instead of going from specific to general to shocking behavior, they go from shocking behavior to general to specific. Ralph has a really big problem, but instead of thinking of it as one problem, Mary starts thinking of it as who Ralph is. So whenever Mary sees Ralph doing something she doesn’t agree with, she responds as if he is biting himself. The results can be horrifying.)

The Suddenly Specific Definition Fallacy

JOHN: It bothers me that doctors tell pregnant women that people with Down Syndrome can’t count change. They advise women to abort people like me, when they don’t even know what someone with Down Syndrome can do.
MARY: But most people with Down Syndrome aren’t like you. Just think, it would be so hard to have a kid who could never live on their own.

Rebuttal:
In this fallacy, you tell a person with a disability that they can’t use their feelings or experiences to make a point about their disability, because you just made a new, more specific definition of the group of people being talked about-–a definition which no longer includes them. Mary has transformed John from someone who had authority on the subject, due to his experience, to someone whose experiences aren’t valid because he’s an exception.
Let’s briefly accept Mary’s new definition of someone with Down Syndrome-–a person who can never live on their own. It’s true, John could have some opinions about whether it’s wrong to abort such a person, but he can’t speak as someone from that particular group. But guess what? The prenatal test doesn’t measure whether someone could live on their own, it just measures whether they have Down Syndrome. If a fetus exactly like John is diagnosed with Down Syndrome, it doesn’t get a break because it’s John. Its mother’s doctor is just as likely to present the diagnosis as bad news, encourage an abortion, and list a bunch of things the child won’t be able to do that may or may not be true of the John-fetus in particular, or people with Down Syndrome in general. Being an exception gets the John-fetus absolutely nothing.
The reason the Suddenly Specific Definition Fallacy is a fallacy is because of its suddenness. Stuff goes along, people with a particular disability are getting discriminated against, mild and severe alike. Everyone’s welcome in the stigmatized group. Then someone says, “Hey, I have this disability and all these things you’re saying about my disability aren’t true.” Bam! Apply the Suddenly Specific Definition Fallacy and remove the person’s authority (they can keep the stigma).

(Fun fact: I’m sorry if the example comes off as melodramatic, but I’ve read a lot about this stuff and John is not exaggerating.)

Fallacy Week: The Harder Fallacy & The Uncomfortable Fallacy

2011-06-20T05:00:00.010-04:00

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”

Fallacies of relevance can be very difficult to respond to for several reasons.

1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.

I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?

In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.

The Harder Fallacy

JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.

Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”

(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad’” rule consistently, and only apply it to stigmatized groups.)

The Uncomfortable Fallacy

MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.

Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.

(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)

Autistic Passing Project

2011-06-17T05:00:00.001-04:00

I finished this a while back but hadn't really gotten to posting all of it. It's here:

http://autisticpassing.tumblr.com

go to the last page and scroll up

(eta: just kidding, I put this in the queue thinking I'd have time to finish posting the passing project, but I actually haven't)

What should I know about autism that I'm not learning from pop culture?

2011-06-16T05:00:00.004-04:00

from my disability page here

I feel like American pop culture is obsessed with autism. It is obsessed with two kinds of autism: very severe autism, which it thinks is kids hitting their heads, and mild autism, which it thinks is people who act weird and are socially impaired. In America and some other places, a person with autism can make a ton of money writing a book about having autism, especially if they make it sound as exotic as possible.

I'm a pretty good writer, and I have autism, but I think I will try to make money in other ways. I find it hard to write about having autism, especially if I have to make it sound exotic. It doesn't feel exotic to me since it is my life.* Also, as everyone knows, being asked "What is it like being gay?" or "What is it like being a middle child?" is very confusing, because you don't know what a lifelong situation is "like" because things have never been any other way. I feel like it's kind of a betrayal of yourself to write a really sensational book about a disability you have always had.

Anyway, I'm just trying to say that I'm not going to spend a lot of time writing about "what autism is like for me" or "what autism is." There are lots of places you can read that (some of them good). But this one page is an exception because I really just want to talk about the pop culture portrayal of mild autism/Asperger's Syndrome (mild autism and AS are not really synonyms, but whatever, pop culture thinks they are). I want to explain why it's not correct.

Lots of people think "Asperger's" is a purely social disability.

According to pop culture, people with "Asperger's" do some strange/geeky things, and don't understand other people's feelings, and don't have any friends. And that's all that "Asperger's" is.

This is fucked up because it's not true. First of all, it leaves out some really difficult parts of living with autism, and leads people to think that mild autism isn't a real disability. Second of all, it means that the severity of an ASD person's disability is often judged by how socially successful they are. This means that if a person has friends and/or seems "normal," other people won't believe that they are disabled, even if the person has a lot of other problems.

What are those other problems?

Well, one of them is called "executive dysfunction." I recommend reading the Wikipedia page on dysexecutive syndrome, which is a disorder caused by a brain injury, but is very similar to what ASD people experience. Executive dysfunction affects many people with developmental disabilities and is a huge issue for every Autistic person I know, but it hasn't been studied very much and isn't officially considered to be part of autism. (I'm guessing this is because so many studies are done on kids, who have a lot of decisions made for them and therefore aren't going to show executive dysfunction as clearly.)

Also some people with autism have trouble transitioning from one activity to the next, have anxiety problems, have intellectual disabilities, have depression, have sensory issues (get upset by certain sensory experiences, like loud noises or stiff clothes), get upset unless everything is a certain way, or have trouble talking. (Trouble talking can mean a lot of things, like having trouble pronouncing words so people can understand them, having trouble putting together clear sentences, not being able to talk at all when you're upset, or talking in a style that other people react badly to.)

One reason I like to say I have autism instead of saying I have "Asperger's," even though there is a stereotype that autism means severe autism and there is a ridiculous stereotype of what severe autism is: my problems are mostly related to executive dysfunction, anxiety, transitions, and having trouble talking. At least the stereotype of severe autism includes people being upset, not liking change, and not being able to talk or take care of themselves. Even though it's overblown, it's more like what my actual problems are than the "Asperger's" stereotype.

YOU MEAN YOU DON'T HAVE SOCIAL PROBLEMS??

Okay dude, here's the thing:

1. Lots of people with disabilities have social problems. Especially people who have developmental delays, because when they're in school, they may not have the skills or interests that other people their age have. Actually, for people with autism, it isn't always that we seem too young; some people with autism seem too old because they are self-educated and know about things that other kids don't know about, or "talk like an old person." But it can go either way. Or both ways in one person. Talking differently or having different interests can make it hard to fit in.

2. Lots of people who don't have disabilities like to ostracize people who are disabled. Some people with mild autism do things that "look disabled" like flapping their arms or clapping their hands when they're excited or running around all the time. This means that many non-disabled people aren't going to want to be friends with them.

3. Some people with autism may want to talk about the same things all the time, or always do activities that are related to those things. There are actually lots of subcultures that are accessible to a person like that, but the average non-Autistic person will want to do a variety of activities, and won't get along with such a person.

4. Some people with autism have very strong feelings and may scare people they want to be friends with, because they are really affectionate and want to spend a lot of time with them right away.

5. Some non-Autistic people may not understand why a person with autism isn't looking them in the eye, or doesn't want to hang out because it would mean breaking their routine. This means that they may think the person with autism doesn't want to be friends with them, when the person actually does.

6. Some people with autism may be shy and anxious as a result of being bullied when they were younger. They may also be kind of self-conscious and distant if they're trying really hard to hide the fact that they are disabled. This can make it hard to make friends.

I'm not saying that I'm 100% sure autism doesn't cause people to have trouble sensing other people's emotions, but there a lot of aspects of autism that could keep someone from being socially successful. I think it's very reductive to say that "Asperger's means a person is socially impaired/doesn't understand other people's feelings/can't make friends."

When I was 16, I was kicked out of a study of ASD kids because the study was about how to make someone better at reading facial expressions, and I was judged to already be good at reading facial expressions. But despite that, I had a lot of social problems at that age, and still have some now.

What is a better way to think about autism?

(In making up this fake question for myself to answer, I'm thinking about a better way than really sensational books and very special episodes of TV shows saying that people with mild autism are super genius geek robots who don't care about other people's feelings, or don't know that other people's feelings exist.)

I wish that autism was more strongly associated with intellectual disability (formerly known as mental retardation). This isn't because some people with autism have ID, although that's true. It's just because I think there are a lot of similarities: a person with autism, ID, or both is born into the world with a certain disability that they will always have. They will develop some skills later than other people. Depending on the severity of their disability, there may be some things they will always need help with. They may have trouble fitting in with other people. They may be abused by other people for being different. They may end up in situations they don't understand (and of course, people may assume they don't understand things they really do understand). They may have trouble taking care of themselves. They may have trouble talking.

This isn't interesting. It's not something to write a book about--which isn't to say that people with autism, or ID, don't often lead interesting lives. But their impairments alone are not interesting. They're just a part of life.

This is not to deny that people with intellectual disabilities are treated terribly in our society, in a different way from people with autism. I'm jealous that they're not seen as curiosities because of their disability, but the awful side is that they are often seen as not interesting at all in a pervasive way. Non-disabled people just want them to be completely kept out of sight. Non-disabled people insult each other using the word "retard" as if it doesn't refer to any real group of marginalized people. Non-disabled people are surprised to learn that a person with an intellectual disability can be funny or cool, and they do their best to avoid finding that out.

However, once people are actually forced to spend time with a person who has ID, such as by being their parent, I think they are more likely to accept the person for who they are and work around the impairments the person has. This isn't really the case with autism. And I think that the movement for people with ID to be treated equally is in a lot of ways ahead of the movement for people with autism, because of this acceptance. At least there are many organizations that encourage people with ID to speak up for themselves--whereas most people with autism are encouraged only to speak about themselves.

*I admit I'm being kind of a bitch what with constantly declaring that I'm not interested in writing about what autism is like. I mean, I know that some people have been recently diagnosed and they are very interested in reading about what autism is and what it's like, which is legit and I don't want to be critical of anyone who's in that situation and happens to wander over here looking for help. I just tend to be really snarky about this stuff because I really don't like the cultural trend of people with autism being expected to educate non-disabled people about autism. But if you actually have autism and want to talk about it, you should get in contact with me on tumblr or gmail or something.

the difference between Asperger's and autism

2011-06-15T05:00:00.014-04:00

from my disability page here

Hi, I was just wondering why you keep using words like "ASD" and "autism spectrum disorder" and "autism" and "Autistic" about yourself when it's pretty clear that you have Asperger's and not autism at all.

Well, that is a good question. Can it be "pretty clear" that someone has Asperger's and not autism? What is Asperger's anyway? What's the difference?

I don't think there is a difference. This isn't to say that everyone with ASD is the same, or that I'm denying the privilege I get from being a person with a relatively mild disability, when some people with ASD are quite severely disabled. But I do think there aren't two distinct types of people with ASD called "people with autism" and "people with Asperger's."

You might be interested to know that there is even another ASD diagnosis besides those two. It's called PDD-NOS and when doctors give it to people they mean "this person has ASD that's milder than Asperger's" or "this person has ASD that's more severe than Asperger's but milder than autism" or "this person has autism but I don't want their parents to flip out so I'm going to give them a diagnosis they've never heard of" or "this person has the traits of Asperger's but they have an intellectual disability or they had a speech delay which people with Asperger's aren't technically supposed to have" or a billion other things. There is also a diagnosis called Nonverbal Learning Disorder, which is something that doctors diagnose people with even though it's pretty much exactly like mild ASD, and some people think that only happens because there is a lot of stigma attached to ASD so doctors don't want to diagnose it.

This is pretty boring to read, but just imagine how much more boring it is to go around with for example a PDD-NOS or an NVLD diagnosis and have people going, "but do you have autism or Asperger's??" And no the solution is not to get rid of the PDD-NOS and NVLD diagnoses and stick to autism and Asperger's, because those are hard to separate too. For example, some imaginary people I made up for you so you can do a diagnosis braintwister:

A. ASD person who is pretty good socially and has good self-care skills, but is nonverbal
B. ASD person who seems very verbal when they are assessed by a doctor, but can't talk when they are stressed, speaks in a very disorganized fashion, and has trouble pronouncing words in a way that other people can understand
C. Person who is quite impaired by their sensory issues, to the extent that in loud places they are perceived as someone with a severe developmental disability--who is actually extremely verbal and has normal intelligence
D. Person who has mild ASD that only affects them a little, in terms of being disorganized and a bit socially inept, but has an intellectual disability that keeps them from being able to read or write very well
E. Person who as a young child was nonverbal and seemed severely affected in other ways, but became verbal as they got older and has worked really hard to learn to do a lot of things, and now doesn't "look disabled" to the average person
F. I could make up some more examples but I am again becoming bored so I will just tell you about a cool exchange I had with someone once:

Me: My friend has cerebral palsy.
Other person: Oh, how does it affect him?

The reason I thought this was cool is because I think it's often not useful to talk about disabilities in terms of "mild," "moderate," and "severe." I mean, sometimes it's necessary to use those terms as shortcuts I guess, but when you're talking about an individual I think it makes more sense to say whether they can walk, whether they can talk, and if so what is the way they walk and talk like? What is hard for them? What is something that they've learned to do on a regular basis, but it still kind of tires them out? What are they good at? What do they like to do? Do some things make them upset that wouldn't make a non-disabled person upset? Can other people tell they're disabled? How does the disabled person feel if other people can tell? How do they feel if other people can't tell? Do they ever take steps to try to keep people from "reading" them as disabled? What is their social life like? How are they at academic stuff? How are they at handling transitions? Are they clumsy? Do they make noises sometimes? Do they want to be in a relationship and if so how's that going for them? Do they live on their own? Can they eat lots of different foods and can they tell time?

I just think that, although the terms ASD and autism may seem overly broad to you, it is much better to use a broad term and then fill in the specifics than it is to act like autism exists in two distinct types, especially when there are so many stereotypes associated with each type. I'd rather someone just find out what I am like by knowing me instead of demanding that I tell them my diagnosis or my level of "functioning" or whether I am "mild."

can't imagine, can't judge?

2011-06-14T05:00:00.008-04:00

(from LOVE-NOS)

Adelaide, actually I didn’t understand what line you were referring to with the terrible vs. unimaginable thing. I’ve been thinking about it more.
I think the difference between terrible and unimaginable is huge.

on the one hand, you can’t completely imagine anything if it isn’t your experience–and everyone should accept that that’s true.

for example, I grew up in a rich family. so if someone’s from a working-class family I’m obviously going to be like, I can’t speak from their experience and I’m going to give more weight to their opinions than mine re: class issues because I’m surely unaware of a lot of stuff. same for other oppressed groups that I don’t belong to. and I guess this is one kind of way of saying, “I can’t imagine your experience–not necessarily because I think it’s a terrible experience, but just, no matter what it is, because it’s not mine. so I’m not going to behave like an authority." But there are limits to this; if I strongly strongly disagree with someone’s actions/beliefs and they attribute their actions/beliefs to an oppressed identity or a terrible experience that I don’t have, and I really think about it but I just think what they did/think is not ethical at all…well, I’m still going to think it’s not ethical.

that’s not totally related but I feel like the response of “I can’t imagine your experience so I can’t judge you” is in SOME WAYS a good response to have, but I feel like when it comes to parents of disabled children, it gets way overdone. the raising/having of a disabled child is seen as so unimaginably terrible that other people are put in the position of feeling like they’re absolutely not ever, ever allowed to judge parents. of course we see this when parents of disabled children kill or seriously abuse their children or put their children in facilities where they are given shocks or take out their kids’ uteruses. anyone who criticizes these parents is constantly told, “you don’t understand the emotional pain/the financial pressure/the physical strain/the lack of free time these parents have.”

of course I don’t understand personally, because I’m not a parent. I try to be as aware as I can. I try to read blogs/watch movies/etc. about people with severe disabilities and their families so that I don’t just project my own experience of disability onto other people and families. I work with people with severe disabilities (I don’t do this to improve my thinking or anything, but just because it’s the type of work I enjoy the most and am good at-–but it helps my thinking, too). I try to think about how all those things could affect a parent–-and I also know that since I am not a parent, I can’t really imagine how it is.

at the same time, I think I can imagine enough to say: there are certain things that no parent should ever do to their kid. It’s not okay. I don’t believe there is some secret feeling that I can’t conceive of, that I would experience if I had a disabled child, and in this feeling would be the reason it is morally acceptable for me to abuse or kill my kid.

so, yes, I can’t imagine other people’s experiences-–but not to an extent where I am going to say, oh, I think certain experiences are so terrible that I’m not even going to begin to think about them, I’m just going to completely detach and not have any opinions about what it’s ethical for that person to do.

2011-06-13T14:54:00.005-04:00

hi guys it's SUMMER BACK CATALOGUE time!!

I know no one reads this blog anymore because I never post, etc., but starting tomorrow there will be a post every weekday

but every silver lining has a cloud and the cloud of the moment is this: most of the posts will just be things that I already posted in other blogs before, wah-wah. I haven't felt much motivation to write lately and I'm not sure why that is.

Well actually I raised 2 Gyarados

which resulted in a sense of pride I've never experienced writing this blog or anything else, so I may raise a few more Gyarados before they lose their luster and I come back here. But anyway, drumroll, summer back catalogue.

AND if you would like to write a guest post, just email me at awf.vivian at gmail.com or ask me on tumblr. I will probably publish your guest post if I agree with it and think it is interesting, some stuff I like is:

disability + pop culture, or really any social justice reviews of pop culture
children's television/movies/games
intersectionality, especially including disability as one of the identities
Christian ideas/discussion
fallacy smackdowns (next week will be a whole week of fallacy smackdowns, so you'll have ample opportunity to see what I mean)

I reserve the right to think your post is boring or just off-topic for what I think of this blog as being about, but I definitely don't care about whether it's polished, I just care about ideas. You can even make a guest post by anthologizing your facebook statuses, if they are on topic.

2011-06-04T21:10:00.000-04:00

hi universe, trying to get this out before I forget.

I haven't been posting here for two reasons, one long in the making and one more recent and specific:

1. I have been using tumblr to have more specific conversations and to make shorter and less formed posts.
2. My school switched over to gmail hardcore. It's weird, because they were basically on gmail before, like my school email worked like gmail and I could gchat on it, so I became dependent on it as my main gchat email. Then it somehow became MORE gmail and now I can't be simultaneously logged into my school account and the gmail account I use for this blog. Anyone who knows me knows that all I do is gchat, so I can never log out there, i.e. I can never log in here.

Since I graduated I'll have to either switch back to my old gmail account or somehow consolidate both accounts into a new one (does anyone know if this is possible?) so I'll probably be here more eventually, but I'm working at camp starting in a week for two months, which completely shuts me off from the Internet.

So

DUN DUN DUN

I'm probably going to set up a queue that will result in quite a lot of posting here while I'm gone! Most of the content will be stuff that I've posted on love-nos or tumblr, and a little bit will be things that I just never ended up posting. Of course if anyone is still reading this blog they're probably pretty rabid fans (as if) and will have doubtless read all of these things before...but you know, rabid fans, and therefore will rejoice in getting to read all of this stuff over again.

Which is to say, this blog might spend the next two months being regularly written by no one and read by no one. It'll be like a zombie apocalypse.

Also, if there was a zombie apocalypse, wouldn't it be exciting if you met the zombies of famous people? They'd be acting just like everyone else.

2011-05-16T01:04:00.001-04:00

what is an indistinguishable when it’s at home? that is, what do indistinguishables look like when they stand in empty rooms? who could love an indistinguishable? (people do, every day.) what happens to them?

how indistinguishable are indistinguishables? does keeping your hands by your sides really cover for all that could go wrong? what does it take to be an indistinguishable? what kind of thoughts are churning in the indistinguishable mind?

can indistinguishables cry? what does it look like? what kinds of places do indistinguishables go to to cry?

what sorts of feelings do indistinguishables have? what about people who were taught that being an indistinguishable was the first thing they should want—but are incorrigibly distinguishable?

what do indistinguishables eat for dinner? what do they put in their napkin? what happens to indistinguishables who pretend they can cook?

do indistinguishables have rumbly stomachs, or do they try to create a clatter to distract the people around them?

David Foster Wallace used to carry around a tennis racket to explain why he carried around a towel, which he actually used to wipe sweat off himself when he was scared. it’s a good story, but there is no indistinguishable pride parade. all the pride of indistinguishablility is like holding a taste in your mouth in a place where you’re not supposed to be eating.

in Sparta, a boy died holding a fox under his shirt while it chewed up his stomach. this has lasted for millennia as a story of something to be proud of, and why this is the case is something that people in power should be asking themselves, but asking themselves questions is something most people in power are too busy to do.

2011-05-13T19:08:00.002-04:00

I hate hate hate when professors have office hours in fucking cafes or random places. Or especially when they say they’re having them in a cafe and then they actually have office hours SITTING ON A WALL BEHIND THE BUILDING. This is one of those things where I bet everyone else thinks it’s SO COOL (just like the project we had in my history class last month that involved social networking as a historical character and I had no idea how to get a good grade, when or how much to work on it, etc.--I was blindsided when I got a B because I thought I’d do badly because thinking about the project made me cry and I got the bare minimum done at random intervals).

First off I feel like it implies that everyone knows where a certain place is and has familiarity with it, but I don’t have familiarity with this place and had never been there before, and felt anxious about going. I’m sitting here feeling all anxious about: will they tell me to leave because I haven’t bought anything? If I asked for the wireless password, would they say no because I haven’t bought anything? What if my professor doesn’t realize I’m here, since he’s NOT EVEN INSIDE and only came inside for a minute to collect the person he’s meeting with before me? Should I go outside and creepily sit there so he can see me from the wall where he’s meeting with the other student, which will probably make it look like I’m telling him to hurry up, when I don’t even care because I’m doing work (except that it’s annoying that I don’t have wireless)? I tried to go into the bathroom and it was locked and instead of assuming that someone was in there (which turned out to be the case when I tremulously asked for the key) I just assumed that it’s one of those bathrooms where you have to ask for the key because that’s how things go for me usually, awesome.

I can’t even email my professor to inform him I’m here because of the NOT WIRELESS.

Dear professors of the world: please, please, please, be boring forever. Don’t have class outside. Don’t randomly have class involve a group activity if it’s a lecture class. Also, no group projects ever please. No fun projects unless you provide a boring alternative such as a PAPER. Even if the paper is intellectually/academically more challenging the fun project, I will suck it up, that’s how much I loathe fun. Have office hours IN YOUR OFFICE. IN YOUR OFFICE. IN YOUR OFFICE. Not at a picnic table, not in a COFFEE SHOP, and not ON A WALL BEHIND A COFFEE SHOP. Or if you have to do this because you’re SO QUIRKY (and I admit I’m being a bitch, and my professor probably just has a whole day of meetings and wants to be somewhere he can eat/drink), make it super 100% easy for students to find you and know that you know that they’re here.

Sincerely,
The lone voice of super boring, uncreative, wonderful, less-anxiety-producing liberal arts education,
AWFV

Update: It got worse.

“I can do RAD all by myself”: a fancy About Me section

2011-05-06T21:00:00.001-04:00

I was born in 1988 to a rich white family on the East Coast of the United States of America. For those keeping track, I was diagnosed with PDD-NOS when I was 9 and Asperger’s when I was 14--but all that really tells you about me is that I was born in 1988 to a rich white family on the East Coast of the United States of America.

By the time I was 18, I had been undiagnosed many times by people both qualified and unqualified to do so; and after a brief flirtation with Autistic culture I soon succumbed to the implications of the types of praise and encouragement young disabled people often receive. When we succeed we’re told that we’re not really disabled or that we’re different from other disabled people. The idea of being a real average disabled person becomes unacceptable. Being approved of or getting the things that we want is associated with not being something that we are; so, growing up, we bury part of ourselves.

I grew up to be a buried young adult. When I associated autism with myself at all, I identified as “very high-functioning” or “someone who used to have Asperger’s.” I even wished there was a word for someone who was more high-functioning than Asperger’s, since I felt I was on the very, very mild end of that spectrum, almost disappearing into thin air.

I experienced a lot of intense emotions, but ultimately calmness and joy, when I was around disabled people; so in college, I decided that I wanted to work with disabled people professionally. As I began to get experience doing this, I became aware of two things. First, I learned that I liked real average disabled people and would like to be one. I also learned that disabled people were often treated or judged in ways that didn’t make sense but were accepted as natural.

So, I became interested in analyzing and taking apart some of the “natural” judgments and decisions that are made about disabled people, and that’s most of what I do here. In the process of writing this blog and learning from other blogs, I’ve made some real average disabled friends and acquaintances who have helped me get better at being RAD.

In a few weeks I’ll graduate from college and go work at a summer camp for teenagers and adults with disabilities. I don’t know what I’m doing after the summer, so I can’t write a better description of my life circumstances. The best way to describe my “disability experience” is to say I’m a cognitive zombie and an emotional werewolf, but I’d rather not try. I’m Christian, queer, and cis; I write genre fiction about dishonest people; and I used to make pop music.

Here is a picture of me with a book I really like, but unfortunately have to write a paper on soon:

[Image description: a white girl with blond hair wearing a black shirt, blue nail polish, and a ring, sitting in front of a window in a white room and holding up Showings by Julian of Norwich. Unintentionally covering up Christ's face. Overdoes image descriptions and as a result tends to avoid them or put them as alt text so no one finds out how dumb the image description is without using a screen reader, or hovering over the image to see what it says.]

about individuals

2011-04-30T14:15:00.000-04:00

I started to write something about this two years ago but I didn't really know where I was going with it, and still don't, but (like lots of people) I find it really gross when professionals and other "allies" think that using person-first language is more important than actually not being ableist. Especially when they boss people who are actually less ableist than they are, or are actually disabled, because the person didn't use PFL.

However, something that I think is even weirder than the prescriptivism on PFL is the word "individuals." You basically only see the word individuals used about people who have committed a crime or are disabled, and a lot of the kind of people who overprioritize person-first language are the kind of people who use the word individuals. It's primarily used by professionals when they are talking about disabled people, either in specific or in general. Someone will talk about the "individual with autism" they are working with, or also you see this in a more broad way used to describe a big group of people--like a service provider might have on their website, "we serve individuals with profound disabilities."

I can't exactly put my finger on what bothers me about the word individual, but I think it's really just the fact that it only seems to be used about disabled people. I assume the decision to use a different word instead of "people" is a reaction to something, but what is it a reaction to? It sounds so alienating and medicalized--what's wrong with saying "we serve people with profound disabilities" or "I've been working with this man with autism?"

Can someone explain this to me?

hurt power and disability 2; or, I HAVE A LOT OF FEELINGS

2011-04-29T12:58:00.001-04:00

I always feel like I'm really hard on my parents here when they're pretty great people and also overpathologizing your kids is such a stereotypical rich person thing, I can't even. But I've written a lot about how I think it's super important for disabled people to be able to make bad decisions without that being seen (especially in the case of people who are receiving services or "dependent" on someone) as a reason that they shouldn't be allowed to make decisions or a reason that their self-expression and decisions should be seen as "part of their disability" in a way that means those things should be suppressed or ignored.

And I feel that is kind of how I was raised; things that in retrospect seem pretty innocent, or at the most things that I would try to stop my kid from doing but would see as funny and not that big a deal, began to feel like ammunition against me and evidence that I a)was someone to be worried about and b)shouldn't be allowed to make my own decisions. Which does a lot to explain the Supercrip Mongoose you see before you, because I feel that if I need support, I won't be able to have anything.

Two entire humans told me they liked and related to the part of my s/m post that talked about submission as a way to experience parts of yourself that you dislike and/or avoid. I was pleased because that was the part that I totally cribbed from other people and mumbled through to avoid saying anything dramatic and getting it wrong. It seems like dominance would be the opposite, i.e. experiencing power that you don't have in real life and sweeping weakness under the rug, but in fact I feel like it's exactly the same failure embrace just in a different way. After all I do stuff with people who know me so it's not like anyone's under the impression I have super good brains and am really tough.

What happens is not exactly a good thing because it means I really overattach to people I do stuff with (and also develop the biggest savior complex in the known universe, which is gross), but for someone to relate to me in that way and vice versa feels like a really radical acceptance of me as a whole person, which is a huge departure from the tendency to either look at what someone does and deny their disability, or look at what someone doesn't do (or does wrong) and say that that's all of them and means something about how they should be treated. For someone to think that it's okay for me to occupy a certain role and make certain decisions, when they know I have all these cracks, is an acknowledgment of The Elevators in me.

2011-04-27T20:37:00.001-04:00

Hi everyone. My name is autism and some mood/anxiety stuff but a lot of people just call me autism. I’m 22 and about to graduate from college. There’s not really much to say about me--I like Skins, I move very quickly, I’m not a great disability to go to church with. But overall I’m just like any other disability and I want the same things.

Well, except that I happen to have a person. My person is called an Amanda Forest Vivian Spectrum Disorder, or AFVSD for short. I was diagnosed with AFVSD when I was nine and she has caused me to have problems with social communication and being gayyy. But seriously guys, that’s between her and me. My AFVSD is none of your business--I’m first and foremost autism, and I want to be treated that way.

The most difficult disabilities for me to be friends with are the ones who don’t respect me as a disability and just treat me like a PERSON. They don’t even see me, just a stereotype of what a person is. They’re so busy looking at my Amanda Forest Vivian Spectrum Disorder that they don’t realize when something is too loud for me, or when I’m really not feeling good and might end up werewolf-attacking AFVSD. Then they act all surprised, but if they just treated me like autism instead of "Amanda," I would be able to achieve more of the things that I want.

No matter how different I may seem with this giant lesbian tragedy attached to my face, please remember that I’m a disability first and a person second--so please use disability-first language to show that you respect me as a whole disability and aren’t obsessed with my person. It’s the LAW.

Yours in disabilitycapades,

autism and some mood/anxiety stuff, ES-FUCKING-SQUIRE

P.S. My AFVSD continues to prefer person-first language and isn't saying otherwise, but neither of us can handle nothings-with-persons thinking they have a right to actually criticize and correct disabilities for not using PFL, especially when they complete ignore actually important things that disabilities are saying about anti-ableism in favor of bitching about a LANGUAGE USAGE THAT SOME OTHER NWAP TOLD THEM TO USE. FOR FUCK'S SAKE.

2011-04-24T19:53:00.000-04:00

There used to be a guy who went to my school, named James, who was blind. One reason I thought James was cool was because of his competence and confidence in asking people for help. He would walk into a room and ask what he needed to know about what was in the room. (I don't mean to act like this is some kind of unusual quality in a blind person, but I hadn't met anyone who was blind before so it seemed really cool to me.)

Once I was talking to Noah about James and Noah told me something he had heard from James's former roommate. James's roommate had asked, "What do you imagine it would be like to be able to see?" and James said, "It would be like having a hand that could feel everything in a room all at once." This has always stuck with me and I don't think I realized why until I watched this video that's been going around tumblr.

The video is an ad for a marketing firm, called "The Power of Words." It depicts a blind guy begging on the street and not getting very much money. A woman comes up, grabs his sign, turns it over, and writes a new message on it. For the rest of the day, the blind guy makes tons of money, and when the woman comes back later he asks, "What did you do to my sign?" She says, "I wrote the same thing with different words."

This would obviously be patronizing no matter what the sign said, but I found the words on the sign to be the most interesting part of the video. The guy's sign originally says, "I'M BLIND, PLEASE HELP." The woman changes it to, "IT'S A BEAUTIFUL DAY AND I CAN'T SEE IT."

This illustrates exactly what non-disabled people want from disabled people.

A lot of blind people are unemployed either because they weren't taught the skills they need to be independent, or aren't given the proper accommodations for getting and keeping a job. I think it's reasonable in our society for a disabled person to express frustration that their disability keeps them from getting the things they want, and to ask for help from other people because of their situation. So although I find a blind beggar to be a questionable subject for an inspirational video, the existence of such a person is realistic and I don't feel that I can condemn the video just because it's about a disadvantaged disabled person asking for money.

However, we're told in the video that the fact that this guy can't work and needs money isn't enough for people to want to help him. People only want to help him when he comes out and says not only, "There are things I can't do because of my disability and that sucks," but, "My experience of the world sucks on an existential level, not just a practical one, because I can't experience the world the way non-disabled people can."

I think one of my Autistics Speaking Day posts was about my desire to always add the phrase, "It's no big deal," after telling people about my disability, even though it actually is a big deal. This is because I don't trust people to understand the difference between the fact that there are some bad things about being disabled, and the idea that my disabledness is tragic in some overarching, objective way. Or rather an overarching, objective, spiritual way, if you know what I mean--the idea that disabled people are less human or less alive due to being disabled.

I think the most negative view you could reasonably have about being disabled is that it makes your life really hard, and it makes you upset a lot, and that sucks. This isn't necessarily my view but I would never criticize another disabled person for having it. But that isn't enough for non-disabled people. They have to feel that disabled people are missing not just the ability to have a job or feel secure, but that we're actually missing a vital part of being alive on the pure basis of our impairment.

I realize now that what James said stuck out to me because I heard it in the context of a society where stories about blind people are often about how they don't get to look at sunsets, or colors, and how tragic that is. I think I remember reading a children's book about a kid who "helps" his blind friend by describing different colors to him in terms of emotion. But if you're blind, the really cool, lovely details of life don't have to do with visual information because that just isn't a part of your life. Not getting to look at a sunset really isn't a big problem. What I liked about James's quote was that he thought of problems due to blindness in very practical terms--because he was blind, he didn't immediately know what was in a room the way sighted people did.

But for sighted people, this isn't enough.

Blind people have to say that their day is worse on an experiential level because they are blind.

And I think this duality--objective impairment, and the nebulous, often unlikely connotations of misery that are attached to it--explains a lot of the things non-disabled people do to disabled people, and why they seem so ridiculous when you look at them straight on.

hurt, power, and disability

2011-04-24T19:52:00.004-04:00

Fasten your seatbelts because this is LONG.

In high school I enjoyed reading flamewars between anti-s/m people and their targets, just because it never failed to make me irritated in a comfortably predictable way. It's only natural that I grew up to be fascinated by "but my child smears feces" and other ableist shock arguments, given that I spent my adolescence reading the arguments of anti-s/m people which often seem to consist of listing sex acts that, while enjoyable to the participants, sound gross or upsetting to the average person.

I think what makes me able to derive masochistic enjoyment (ha ha) from anti-s/m arguments, while ableist arguments just destroy me and break my heart, is that there’s less of a sense of immediate danger. A lot of the time, people who are making ableist arguments are in a direct position of power over disabled people, as parents, professionals, heads of an organization, etc., and are actively working to put their beliefs into practice. People who are making anti-s/m arguments often seem to be talking in this weird philosophical way about what sex acts other people should engage in or fantasize about.

I don’t mean to sound like I think s/m people aren’t oppressed, and in fact in some ways oppression of s/m people is worse than ableism, but when it comes to flamewars on the Internet my response to anti-s/m people is one of being annoyed and baffled rather than afraid. Because most people grow up liking whatever they like, sexually, so anti-s/m people seem to be implying that certain people just shouldn’t have sex, which seems like such an obviously douchey and ridiculous demand to make of another person that I can’t believe they spend so much time saying it and feeling as righteous about it as they do.

That said, if I was going to engage with the argument that people shouldn’t do s/m and/or d/s because it’s bad for your politics and your health, I would say that, in an alternate universe where people could choose what sexual acts they were into, there would be very good reasons for a disabled person to think about choosing to be into s/m and power exchange. As an inhabitant of the real world, I just think the intersection of s/m and disability is a happy accident for the people who experience it, rather than something anyone can or should “try” because it can destabilize and alleviate some of the bad parts of being disabled. But I want to write about what those destabilizations and alleviations can be, in the context of stuff like Failure Theory and The Classic Disability Catch-22. A few of the things I’m saying are specific to autism but many of them are not which is why I’m using the term “disabled,” throughout.

One by one I’m going to discuss hurting someone, receiving hurt, dominance, and submission, and what engaging in each of those four things might do, mean, or bring up for someone who is disabled. Most of what I write will be in the form of questions because I’m talking generally, and even if I wasn’t there probably would still be no cut-and-dry meaning or effect or answer.

Hurting Someone

(I’m talking about “hurt” instead of “pain” because I don’t want to imply that I’m only talking about physical pain. I do think hurt is a problematic word for me to have chosen because it seems to imply actual harm, which I obviously don’t think should be present.)

People with psychiatric and developmental disabilities are constantly living against the expectation that we’re going to be physically violent or, in the more “harmless” version of developmental disability stereotypes in particular, that we’re going to offend people and otherwise misunderstand what they want and need from us. Some of us experience police brutality due to being read as "dangerous" just because of the effects of our disability. The idealized behavior for a disabled person is that of working incredibly hard to fit ourselves around and into other people’s desires. If we don’t do this we risk various stigmas, some merely insulting and some negative enough to cause us to lose our job, be arrested, etc., when we haven’t actually hurt anyone.

So, if you live your life having been taught that you could hurt someone at any minute--or maybe you know that’s not true, but you still know that other people think that and you have to manage their reactions to you--what does it mean to decide to hurt someone, and do so carefully and in a way that’s enjoyable to them? What does it mean to realize that, actually, you are not on the verge of exploding and killing someone like in Of Mice and Men--that you can actually be in control of how you hurt someone, and do it “correctly” (for them)?

What does it mean to throw out your usual mindset--be nice, apologize a lot, don’t talk too loud, don’t move too fast? What does it mean for your concept of being a socially skilled person, being polite, or being a good person, if you interact with someone by a completely different (or even opposite) set of rules from your usual set, and this pleases them? Actually I do think there’s an answer to this one, but I’ll spare you the boredom of hearing it from me again.

This is something that I’ll come back to in every section, I guess, and it’s one of the things that is fairly autism-specific. What does it mean to work hard to affect someone in a certain way, and have them appreciate that and see it as something that takes energy and skill, instead of just expecting it?

Also--and this is a topping/hurting-specific thing I guess--in some people’s dynamic, you could even hurt someone in a way they don’t like, and that would be fine; within limits, their feelings are irrelevant to what happens. What if the way you and your partner/s do sex is that you do whatever you want and they’re expected to adjust to you?

Receiving Hurt

One of the most important qualities for a successful disabled person is the ability to bear pain quietly; and not only should you bear pain quietly, but you should bear pain quietly, quietly. The most perfect disabled person receives emotional and physical discomfort and pain with a complete poker face, and this is in the service of a goal: appearing to experience the same amount of pain as non-disabled people, and for the same reasons. Which is to say that the most perfect disabled person appears non-disabled and is not admired by anyone for her stoicism because, if she’s doing it right, no one knows she has anything to be stoic about. If you’re disabled, you deserve to have pain as an invisible constant force in your life, and you deserve it so much it’s not even worth mentioning.

While I’m at it I should mention that some disabled people don’t know what we want, or what hurts us, or what harms us. This can be because of cognitive and language aspects of our disabilities (not being able to sense we’re in pain, or articulate it), or because we have chronic pain and become inured to the sensation, or because people are always telling us what a normal person would be feeling or wanting in our situation, or a combination of those things.

What does it mean to say that you want pain, when you’ve spent your whole life pretending pain doesn’t exist because the expression of pain is so horrifying to people? What does it mean to be able to tell someone that you are or were in pain without this being something that makes them either pity you, or resent you because they see you as lying or exaggerating your pain to get pity?

What does it mean if someone actually enjoys your reaction to being in pain, and wants you to say and show them that you’re in pain? Conversely, what does it mean if you can be very stoic about pain, and someone actually appreciates that about you and sees it as a special skill, instead of a prerequisite for being respected as a decent and competent person?

Also, what does it mean to have it actually be important and expected that you try to figure out what level of hurt is harm, and what your limits are? What does it mean to have a word that means “this isn’t okay it has to stop,” and the other person’s actually supposed to listen?

(I just realized that I was using the word pain instead of hurt for this whole section. I still meant it in the broadest possible way.)

Dominance

In The Classic Disability Catch-22, I wrote that in order to be seen as the kind of disabled person who deserves to be successful, you must make it appear as though there’s nothing you can’t do. This means that you have to perform beyond your means, damaging yourself in the process, and/or lie and trick people into thinking you’re doing things you’re not actually doing. Because of the dishonesty and recklessness involved in fulfilling this requirement, no one who is perceived as belonging to this elite class of disabled people actually feels secure as a member of that class. This is Failure Theory. Of course, people who aren’t perceived as belonging to that class of disabled people have it a lot worse; they have shown the wrong kinds of weakness and impairment, and barring some extraordinary feat of illusion or strength, they will not be seen as deserving the support or acceptance they need to achieve their goals.

There’s also the issue of “body language” and what that means about your sense of power, authority, and control in the real world. If you look disabled, you look like prey. You may look, to some people, like you shouldn’t be out on your own. Your eye gaze or the way you speak may cause people to read you as shifty, incompetent, frightened, or shy--and given the way people read you, you probably do feel shifty, frightened, and shy, and may be beginning to wonder if you are incompetent.

You may be told that in order to deserve respect, or to be seen as a competent or smart or secure person, you have to have the ability to speak in a certain way and look at people in a certain way; or, as discussed in the “receiving hurt” section, you may have to be able to be stoic about things that you simply can’t be stoic about.

When someone decides to submit to a person who is stuck on one side or the other of the Classic Disability Catch-22, is regularly mistaken for a child, starts crying on the subway, needs help getting dressed, can’t speak loudly enough to be heard by most people, etc. etc. etc., this is a dissolution of standards about what kind of person is supposed to be allowed to have authority and control, whether by the standards of society or by the person’s own standards (in the case of people who are read as non-disabled or successful disabled people, but suffer from Failure Theory).

Submission

Obviously submission doesn’t have to do with whether someone is “weak” in a pervasive sense, but for a lot of people being submissive involves doing and saying things that are associated culturally with weakness and vulnerability. It also sometimes involves letting go of control and doing what someone else says.

So if you’re in a position, in real life, where you have a chance to be successful only as long as you never show weakness, then what does it mean to be able to express weakness with someone and not be destroyed by it? To have someone actually like and enjoy that part of you, and want to see it, and still respect you when they see it? On the other hand, if your real life position is one of being fucked over because you’re read as weak or because there are things you can’t do--again, what does it mean to express weakness or inabilities to someone and have them think it’s cool, and have them respect you regardless?

Performing weakness, or allowing yourself to sincerely experience weakness, is an act that is comparable to the act of deciding to hurt someone. It involves a similar controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.

I find it astoundingly privileged when anti-s/m people talk about how, for example, doing power exchange is “bringing in” all these terrible things from the outside world into your relationship. When you’re disabled, lack of power is such a huge part of who you are that it’s hard to imagine that not being a part of any relationship you have. So, like, that would be really cool to be worrying about “bringing in a hierarchy” or “bringing in brokenness” into a relationship. It sounds like a charmed life.

I haven’t come across much discussion of the s/m and disability intersection; staticnonsense’s Kinky Disability posts, which I love, are really one of the only attempts to address the issue that I have seen on any disability blog. Before the Disability Internet, of course, there was Bob Flanagan, but I haven’t done enough research to know if he was part of any kind of movement. I feel nervous about posting this because it is so long and I haven’t really written about any kind of sexuality before, but I just think this intersection is a really fascinating one and worth talking about.

some models and their applications in fiction

2011-04-20T17:53:00.001-04:00

To me there are three ways of portraying disability in fiction--medical model, social model, and fake social model, with the first and the last being the most common. Although I wouldn't say it's the best movie I've ever seen, It's Kind of a Funny Story was impressive in its attempt to tell a story within the social model. It doesn't see the main character's problems--suicidal ideation and panic attacks--as a reason to avoid making a fairly typical quirky teen comedy with montages, huge amounts of voiceover, and animated sequences. And although Craig, the protagonist, is in a psych ward with people who have more severe problems than his, he ultimately identifies as "like them." The standard romantic conflict, where a boy must choose between the girl he always thought he wanted and a new girl he really should be with, is here about normalcy vs. visible psychiatric disability. The non-disabled girl Craig thinks he wants sees his hospitalization as "edgy," but is disgusted when his anxiety causes him to throw up; the girl he should be with cuts herself on her face. Reviews of It's Kind of a Funny Story insisted on reading it as either medical model or fake social model, and effectively criticized it for having a protagonist whose disability wasn't obvious or severe enough.

What medical model means in pop culture should be obvious enough. In this dour movie, Craig displays every textbook symptom of depression and anxiety, and the montages and fantasy sequences are excised because they're not appropriate for such a serious subject. Also excised are the major subplots about the academic pressure Craig is under from his friends, school, and family, and how this conflicts with his love of drawing. This might imply that society contributes to Craig's problems, which would mean he isn't really ill, just sensitive! Real disability is obvious and, when untreated, looks the same in all situations.

Fake social model is more fun to watch--a fake social movie could definitely include montages--but it's ultimately just as unsatisfying and lacking in truth. I call it fake social model because I think it's what people are responding to when they say things like, "In this case, the social model fails." Sorry, guys. Prophecies can fail, tongues can cease--but the social model remains applicable to every case there ever has been or will be. The thing is if we say "disability isn't real," we mean objectively. Many important things are not objectively real. The fake social model takes the perspective of, "Not only is disability not objectively real, but it isn't real, full stop." Of course, this is obviously not true, which means that stories in the fake social model which have more than one disabled-identified character often portray the main characters in fake social model, and other characters in medical model. The way this would work in It's Kind of a Funny Story would be to show Craig's anxiety and depression as entirely caused by external pressure, or even imagined out of nowhere because he lives in a society that is always "labeling people." The more severely, inarguably disabled characters would function as jokes--how funny that anyone would think Craig is like them, when he's clearly like us!--and possibly by tragic example they would convince Craig that, since he's not as bad off as they are, he must be normal. The girl Craig falls for would also be fake social model, and in all likelihood would not cut her face--self-injury is serious, you know, and a character who's Not Like Us is too sad or funny to be a viable romantic interest.

Fake social model is frustrating because, of course, it always fails when applied to all disabled people. So it ends up promoting a feeling which is even more offensive than the medical model--that it is wrong for our hero to be under pressure, overmedicated, involuntarily committed, stigmatized, or whatever else he or she faces, as a result of being mistakenly identified as disabled. FWD/Forward did a whole post discussing tropes of non-mentally ill people who end up in psych wards, and came to much the same conclusion. The implication is, invariably, "this is wrong because the hero isn't really disabled." Real disabled people, those ghouls, deserve all this, but fortunately it is not Our Life.

The third option, of course, is social model. True social model can be any genre, though pure tragedy or educational film often has difficulty understanding it. Life tends not to feel like either of those things. It's probably no surprise that I began this post thinking about Skins which awestruck me with its ability to hold two ideas in its head at the same time--a)JJ is genuinely disabled, and b)the stigma he faces is a problem. This is real social model writing, which pays attention to both impairment and outside pressure, as well as the ways the two can exacerbate each other. Though aspects of It's Kind of a Funny Story are very naive, and it doesn't reject fake social model as clearly as I would like, the movie cares enough to portray a complex disability experience and should be commended.

apologies & far future promises

2011-04-13T23:30:00.001-04:00

Gosh I don't post very much do I. Sorry about that. I'm not quitting. I do post on tumblr a lot, and fairly often converse about disability stuff on there. But when I'm at school it's kind of like there are the things that I run away to when I'm stressed, and it used to be this blog but now it's more often tumblr. But you know after I graduate and all I'll be able to focus and write here more. I have lots of ideas, unfortunately, as usual, including:

1. disability and gender expression, especially painful gender expression. If you have sensory & cognitive problems, being feminine or masculine can hurt, maybe being feminine especially. Among liberal people, I feel like it's often seen as a weak/oppressed behavior for someone to care so much what they look like that they would suffer for it, but given the sort of things that cause me to suffer or be overtaxed, not suffering would kind of mean not expressing myself through presentation at all. So that's interesting.

2. this post I already wrote in a notebook months ago where I talked about 3 different ways of portraying disability in pop culture: medical model (dour fiction where authority figures are always right), fake social model (funny and interesting fiction where authority figures are wrong, but the "disabled" character isn't really disabled), and actual social model. And I discuss the movie It's Kind of a Funny Story which was an admirable attempt at making a mainstream movie in social model, but was annoyingly written off by reviewers when they couldn't categorize it as medical or fake social model. So this one I just have to type up.

3. really long post which I have written a lot of, where I attempt to show that both person-first language and disability-first language are offensive, so we basically can't win and should stop caring.

4. possibly a post about The United States of Tara? As someone who doesn't have DID or have any friends with DID, my understanding is that the show portrays DID quite unrealistically so I probably should reject it. But I can't just see it as a guilty pleasure that I stick with because I've been watching it for years--there's something about the show's portrayal of disability that is really down-to-earth.

2011-04-13T00:07:00.002-04:00

I was thinking about identifying as gay and why that’s weird for me, I guess in the short term because I like a boy right now, but in the long term because I don’t consider this (or any other instances that may occur) to be exceptions to the rule of my orientation, but in fact to be consistent with it.

I wouldn’t correct someone who called me queer, as that also describes me, but gay or homosexual is the label I’d rather use. I see why the word queer is appealing because of its fluidity but it’s precisely that fluidity that causes me not to prefer it, and even caused me to hate and reject it when I was younger. As a teenager, I had experiences that shaped my personality and spirituality which were based in being not “other than straight” but a girl who was attracted to other girls and not attracted to boys. (I guess I should say female-assigned because I didn’t really identify as a girl for some periods of my adolescence.)

In the really lonely times that made me the person I am, being gay felt like the most important aspect of me even as it was the most damning. The fact that I was not attracted to boys was a big part of it because it wasn’t just “I’m different” but “there is actually no way I can fit into the world as the world seems to be.” I remember almost starting to cry at school one day when I was in a room with some girls who started having a conversation about which smells were most attractive on boys.

It also is a wonderful and painful part of my life that I have really close, physically and emotionally affectionate, friendships with straight guys. It’s wonderful for the closeness, but painful for various reasons: feeling outranked in importance by my friends’ girlfriends, feeling like I don’t count because I can’t provide sex, feeling like I’m seen as a threat because I’m a girl who’s close with someone’s boyfriend and I have to distance myself/quit being physically affectionate to show that I’m not a threat, being mistaken for a friend’s girlfriend and getting approval from straight people for our perceived relationship, which is kind of painful, and so on. All these experiences are ones that I have pretty regularly so being not attracted to boys is a big part of my life and I’d like to continue to claim it as part of my identity whether or not I happen to like a boy at the time.

Okay, so what do I mean by saying that I can like a boy without it being an exception, but I’m not attracted to boys?

Well, there are multiple factors that lead to me being strongly attracted to someone. I’m attracted to people who are very translucent about their feelings, who are clever, and who put me in a certain frame of mind sexually. Those are the three most important factors—well four I guess as gender is probably up there with those three as a massively important factor. Then there’s stuff that would trigger me to be attracted to someone, like having blue eyes, but that I don’t really feel the absence of in the strength of my attraction.

Let’s say that I said, “I’m attracted to people who have black hair and I don’t find any other hair color attractive,” and I lived in a society where the hair color that you were attracted to was really important, and I wasn’t raised knowing that I could like people with black hair, and I thought God might be punishing me for liking people with black hair, and it was this huge experience in my life. I mean, I’m giving this backstory to explain why I might say about myself on a regular basis, “I’m attracted to people who have black hair and I don’t find any other hair color attractive.” Because it would be very important, if I lived in that world.

But in the real world, where hair color preference isn’t seen as the most important aspect of your sexuality, if I liked someone who had blond hair—not because they had blond hair, but because everything else about them was one of my triggers for attraction—this really wouldn’t be some big shift in my sexuality where I’d now have to say, “I’m attracted to people with black hair and people with blond hair,” because I wouldn’t be any more attracted to blond-haired people than I was before, and in fact I still wouldn’t be attracted to blond-haired-ness at all. It would just be that it wasn’t the only defining factor in me being attracted to someone.

To make a really long story short, I am gay but although gender’s a hugely strong factor for me, there are other equally strong or stronger ones. But there’s not a word for this, sad times.

from June 2009

2011-04-07T17:18:00.000-04:00

[I found this on my old livejournal, it's quite different from how I feel about things now but I thought it might be interesting.]

Liz called me yesterday because she was bored.

I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.

Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.

So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.

Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.