28 December, 2011

last chapter of a very long story

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.



26 December, 2011

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?

23 December, 2011

the long version

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.


18 December, 2011

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

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.)

16 December, 2011

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.
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."

11 December, 2011


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.

09 December, 2011


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

06 December, 2011

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

“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.

05 December, 2011

important lifestyle change!

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
now ready to put on clothes

note to myself for future annoying pop culture posts

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)

03 December, 2011


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.


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

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.


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.

30 November, 2011

can diagnosis make you feel good?

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.

28 November, 2011

why no one counts

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.

27 November, 2011

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

(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.

25 November, 2011

some touch rules

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.

11 November, 2011

about this blog

I am actually writing this in December 2012 and hiding it in the past so people don't mistake me for someone who writes real blog posts.

My name is Amanda. I'm 24. For the first two years I was writing this blog, I went to Oberlin College in northern Ohio. After I graduated I lived in Cincinnati for a year and then I moved to San Francisco. My points of view are:

1. I have worked with disabled people a lot, mostly at a summer camp for developmentally disabled teenagers and adults, and at a nursing home for seniors with dementia and mobility disabilities. I have seen a lot of messed up things and first became aware of hardcore ableism when volunteering at a behaviorist school for kids with autism. Right now I work for a severely disabled young woman and her parents and I'm not experiencing turmoil about anything related to my job, which is a brand new feeling.

2. I am disabled. Specifically I have autism, but I refuse to say that anymore. It's a totally immature way of dealing with conflict but most people's conception of autism is so unrelated to who I am that if I mention my diagnosis, everyone tries to argue with me and it makes me feel terrible. So let's just say I have plenty of learning disabilities and I am crazy and I don't know which one came first. But most of my friends are Autistic and my main connection to the disability rights movement is through the Autistic Self-Advocacy Network, so I'm not doing a good job being an unidentified disabled person.

3. It's probably important to note that most people do not perceive me as disabled, especially in situations where I'm perceived as "staff" for a disabled person. "Looking non-disabled" is completely subjective and doesn't necessarily have much to do with who someone is or what their disability is like, but nonetheless I tend to get treated like I'm not disabled which gives me a lot of feelings of not existing, divided loyalty, being worried that I'm faking my disability, etc. It also means I get to hear bad stuff about disabled people because people think there are no disabled people in the room, which explains the name of my blog.

I try and write about power dynamics I experience as a staff person, fallacies, passing, and some other things.

Fallacies--society creates "facts" about disability and disabled people for the sake of convenience. How can you argue about anything when everyone doesn't even question that these things are true?

Passing--hiding or downplaying stigmatized identities. The most well-known example might be biracial people passing as white, but people can try and pass as upper-class, cisgender, heterosexual, non-disabled, etc. You can try and pass on purpose or someone might do it to you against your will. Why pass? How does it help or hurt you? Who do you become when you pass, especially when you are trying to live beyond your means in order to pass? Why do professionals assume disabled people are more healthy/functional if they pass as non-disabled?

This blog is 4 years old and boomerangs a lot in style but you can usually count on a lot of puns, pop culture references, and TMI. If you want to be friends with me or ask me about my actual content, please do so. Don't try and talk to me just because I have autism because I know NOTHING about autism. My house looks like a trash can and I'm drunk all the time.

(I know the first 6 months of this blog are kind of like "look at me I have autism" but I realized it was boring and made me feel gross.)

When I started this blog I used to make a lot of off topic posts so I made a directory of the posts that I thought were actually worth reading, but then I got a tumblr and didn't make so many off topic posts on here and the directory swelled to a point where I can't even understand it. If you can use it I feel sorry for you.

About me: I was born in 1988 in the US to parents who were born in the US, I am white, I am cisgender, my family always had enough money, I am gay, and I generally wasn't in what you would call special ed. I still live in the US, I have trouble thinking about religion or politics but I'm something like a Christian socialist and don't really see a line between those two adjectives. I went to preschool, kindergarten, elementary school, middle school, high school, and 4-year college, and I "live independently" far away from my parents. I work low income jobs and try to pay for my own food, rent, and insurance, but my parents pay for my phone and I would be able to fall back on them in an emergency. I am actually telling you this to apologize for failures in empathy and form some kind of backdrop to my anecdotes, but if you want to explain why I'm not really disabled I want you to have a head start.

10 November, 2011

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)

08 November, 2011

disabled staff person no. 03847101

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.

06 November, 2011

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.

02 November, 2011

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


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:

fashion fluttershy on the wallgreens shelf

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:

a purse big enough to carry 2 small books and a lot of small things but not a fashion fluttershy

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.


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!


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?"


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

(thomas the tank engine battery operated 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

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