31 October, 2011

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

25 October, 2011

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?

17 October, 2011

band names list

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
Ice Cream Machine
The Talking Beasts
The Enchanted Forest
Dark Dates
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

16 October, 2011

WHO ARE YOU TALKING ABOUT?? or, sorry Pancho

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?

13 October, 2011

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

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.

09 October, 2011

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!

07 October, 2011

surprise sanity!

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.

05 October, 2011

Armchair Farmhouse #1: Clayton

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

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?
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.

04 October, 2011

3. Real Life Facts


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


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


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.

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