behavior vs. ability

Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.

1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?

2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?

As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.

However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.

One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.

There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.

When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.

Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.

Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.

1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."

2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."

3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."

4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."

5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."

#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.

Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.

But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."

I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.

An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.

Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.

No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.

If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.

In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.

some models and their applications in fiction

To me there are three ways of portraying disability in fiction--medical model, social model, and fake social model, with the first and the last being the most common. Although I wouldn't say it's the best movie I've ever seen, It's Kind of a Funny Story was impressive in its attempt to tell a story within the social model. It doesn't see the main character's problems--suicidal ideation and panic attacks--as a reason to avoid making a fairly typical quirky teen comedy with montages, huge amounts of voiceover, and animated sequences. And although Craig, the protagonist, is in a psych ward with people who have more severe problems than his, he ultimately identifies as "like them." The standard romantic conflict, where a boy must choose between the girl he always thought he wanted and a new girl he really should be with, is here about normalcy vs. visible psychiatric disability. The non-disabled girl Craig thinks he wants sees his hospitalization as "edgy," but is disgusted when his anxiety causes him to throw up; the girl he should be with cuts herself on her face. Reviews of It's Kind of a Funny Story insisted on reading it as either medical model or fake social model, and effectively criticized it for having a protagonist whose disability wasn't obvious or severe enough.

What medical model means in pop culture should be obvious enough. In this dour movie, Craig displays every textbook symptom of depression and anxiety, and the montages and fantasy sequences are excised because they're not appropriate for such a serious subject. Also excised are the major subplots about the academic pressure Craig is under from his friends, school, and family, and how this conflicts with his love of drawing. This might imply that society contributes to Craig's problems, which would mean he isn't really ill, just sensitive! Real disability is obvious and, when untreated, looks the same in all situations.

Fake social model is more fun to watch--a fake social movie could definitely include montages--but it's ultimately just as unsatisfying and lacking in truth. I call it fake social model because I think it's what people are responding to when they say things like, "In this case, the social model fails." Sorry, guys. Prophecies can fail, tongues can cease--but the social model remains applicable to every case there ever has been or will be. The thing is if we say "disability isn't real," we mean objectively. Many important things are not objectively real. The fake social model takes the perspective of, "Not only is disability not objectively real, but it isn't real, full stop." Of course, this is obviously not true, which means that stories in the fake social model which have more than one disabled-identified character often portray the main characters in fake social model, and other characters in medical model. The way this would work in It's Kind of a Funny Story would be to show Craig's anxiety and depression as entirely caused by external pressure, or even imagined out of nowhere because he lives in a society that is always "labeling people." The more severely, inarguably disabled characters would function as jokes--how funny that anyone would think Craig is like them, when he's clearly like us!--and possibly by tragic example they would convince Craig that, since he's not as bad off as they are, he must be normal. The girl Craig falls for would also be fake social model, and in all likelihood would not cut her face--self-injury is serious, you know, and a character who's Not Like Us is too sad or funny to be a viable romantic interest.

Fake social model is frustrating because, of course, it always fails when applied to all disabled people. So it ends up promoting a feeling which is even more offensive than the medical model--that it is wrong for our hero to be under pressure, overmedicated, involuntarily committed, stigmatized, or whatever else he or she faces, as a result of being mistakenly identified as disabled. FWD/Forward did a whole post discussing tropes of non-mentally ill people who end up in psych wards, and came to much the same conclusion. The implication is, invariably, "this is wrong because the hero isn't really disabled." Real disabled people, those ghouls, deserve all this, but fortunately it is not Our Life.

The third option, of course, is social model. True social model can be any genre, though pure tragedy or educational film often has difficulty understanding it. Life tends not to feel like either of those things. It's probably no surprise that I began this post thinking about Skins which awestruck me with its ability to hold two ideas in its head at the same time--a)JJ is genuinely disabled, and b)the stigma he faces is a problem. This is real social model writing, which pays attention to both impairment and outside pressure, as well as the ways the two can exacerbate each other. Though aspects of It's Kind of a Funny Story are very naive, and it doesn't reject fake social model as clearly as I would like, the movie cares enough to portray a complex disability experience and should be commended.

disability services are not accessible!

Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."

Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...

So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.

So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.

Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.

So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.

So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.

Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.

But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.

So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."

So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.

"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.

But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.

So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.

For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.

Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.

(break)

Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.

Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.

Um, yeah, shit, what was my third thing?

I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.

Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.

So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.

Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.

Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.

What else did I have to say? Let's find out.

Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.

So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?

Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.

Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.

Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.

Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.

(break)

Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."

So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.

Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.

And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.

from Ragged Edge Magazine May/June 1999

Playing Cards at Boston Children's Hospital by Lisa Blumberg was linked in a blog I was looking at and it's a really good and important piece. It made me really upset to read it.

It was striking to me how much I related as an Autistic person to the professional attitudes that Blumberg experienced, since she has cerebral palsy and no mind disabilities. I'm kind of leery about doing this because I don't want to give the impression of appropriating someone else's very different experience, but I want to quote some of the lines that really resonated with me:

Once Matty [her physical therapist] watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."

I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words...

When Blumberg was in her first year of college, a doctor spent months pressuring her and her mother to agree to a surgery that involved cutting into Blumberg's muscles, even though Blumberg really, really didn't want it. The doctor constantly told them that if she didn't get the surgery, her hips would dislocate by the time she was forty (then he kept lowering the age at which this would supposedly happen). As an adult, she found out that there was no way this would have happened before she was very old.

By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement...Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.

Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.

... Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.

At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."

No one had told me. I had not been playing with a full deck.

"Why did he do it?" I screamed.

"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."

So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.

...By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.

Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.

I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this...It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man.

(emphasis mine)

Social Skills Don't Exist

An exploration of the concept of social skills, particularly (but not exclusively) as it relates to people with autism, victim-blaming, and the Power of Love:

1. What are social skills?
2. What this is not

Showing likability and connection, and skill and work, that is unrelated to being normal:

3. About Stephen
4. Social skills and intent
5. Is going to a hospital normal?
6. Mindfulness and modulation (a general look)

7. Break for love

Some more on skill/work/compassion:

8. Mindfulness and modulation (cashiering)
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)

Other things on various subjects:

10. a note on a
10a. input vs. output
11. My year of flops
12. Bird brains

13. Social model of social failure

12. Bird brains

The classic example of impaired "social skills" in people with "Asperger's" is a person who constantly talks about their favorite subject, and doesn't notice other people's boredom or discomfort. I will explore this by presenting two people who like to talk differently.

Tobias likes to receive a lot of information at once, or give a lot of information at once. When talking to Jake, Tobias will try to talk about his favorite subject, roadkill, and doesn't notice that Jake is indicating he is bored, which he is showing by checking his watch, sighing, and trying to change the subject.

Jake likes to joke around and talk briefly about various subjects. He will ask Tobias how he is doing, then switch the topic to his own family and friends, then just as quickly make a joke that he hopes Tobias will laugh at and build on. Jake doesn't notice that Tobias finds all the agitating and confusing, and is expressing his feelings by humming, rocking around, and constantly changing the subject back to roadkill.

Jake and Tobias have different brains, but they're both acting the same. Neither person is observant about how the other person might be feeling; neither puts forth the effort to have the kind of conversation that the other person might like.

However, if a professional observed Jake and Tobias and wrote a report, the report would be about how Tobias couldn't relate to the "typically developing" or "neurotypical" Jake. Jake kept trying to have a give-and-take conversation with Tobias, but Tobias wasn't having it. The professional might even conclude by saying what a nice person Jake is for being friends with someone like Tobias.

But in fact, even if Jake is being "nice" by wanting to be friends with someone different from him, they're both failing each other in the same way. This is why I don't like the words "neurotypical" or especially "typically developing." People plug those words in to be politically correct, but if they still are framing interactions between "typically developing" and "special needs" people this way, then the words they really mean are normal and defective.

6. Mindfulness and modulation (a general look)

One time when I was making an earlier stage of this post, Fiona commented and defined social skills in the following way:

I think social skills are a cluster of related skills, not just one skill. Mainly I think it revolves around a) being able to read people via their body language and facial expression and tone of voice, and to be able to adjust you how deal with them appropriately based on that, b) being a good communicator; knowing how to bring up sensitive topics and assert yourself without increasing the level of conflict but being able to achieve a sort of win-win situation where both parties feel like they were treated fairly and got what they emotionally needed, c) being able to approach people and make friends without experiencing a lot of rejection.

Right now I would like to zoom in on b (I think c is what a lot of this series is about--rejection is an action undertaken by other people--and I may briefly address a because I think it's the "skill" that has the strongest case and it would be disingenuous for me to ignore it). If you are going to describe social skills as getting along with other people and being diplomatic, then you have to prove that normal people usually get along with other people and are diplomatic. You can't prove this, because almost everything that happens in the world shows that it isn't true. Besides, if all normal people had this type of "social skills" and all people with autism didn't, then people with autism wouldn't have social problems anyway--as long as they only interacted with normal people, they could rely on the normal people to adapt to them. Since this is not how things are, it can't really be true that b is a part of being normal and not-b is a part of having autism.

I actually do think there is a skill set that involves mindfulness and accommodating other people, but it is not particularly associated with normal people. Lots of normal people have it but lots of people with ASD have it too. In fact, I think that some people who have grown up being "weird" or "socially impaired" or "socially isolated" have an almost mathematical sensitivity to other people's feelings, because to them relationships feel more novel.

One time another person with ASD send me an email saying something like, "I'm really stressed and I have to write an email to my sister, but I thought I should write to you first because I know that you might get worried and think I'm mad at you if I don't email you back." This is a good example (and a lovely person), but a better exploration of the same thing was written by Luai and posted here:

I saw a report once about a study where autistic kids and NT kids were asked a series of questions about how they would act in certain situations; one of them was what they would do if they saw their mother crying. While the NT kids answered that they would go over and talk to her and hold her, the autistic kids almost universally said they would do something they knew she liked, like emptying the dishwasher, or making something for her.
And I love this, because it illustrates something I've always felt was true. If you don't know the social script, the set thing "everyone" does when someone is upset, or the set thing that "everyone" thinks is valuable, you have to think it through for yourself. You have to think, what makes person X happy? And this is why that boy caught bugs for you in seventh grade, and why I made a green alligator-shaped valentine for my crush in first grade, and why a friend of mine made a special "romantic dinner" for her boyfriend that consisted of pokemon mac-and-cheese and dinosaur chicken nuggets.

Sadly the article referred to going over to one's mother and hugging her as being the "right answer" (as in, "all the normal kids picked the right answer, but the autistic kids...."). >.<; I honestly don't know how people can continue to be so stupid.

Postscript: I like Fiona and she can have whatever opinions she wants. I don't want her to feel like a frog that I am taking apart.

3. About Stephen

This summer I had a camper named Stephen of whom I was very fond. Although Stephen was not very good at explaining what he wanted or needed, he talked all the time as he was a full-time user of language as maintenance. Some common threads of his were:

"They have to charge the golf cart?"

"No camp in the winter."

"Will I have a good Thanksgiving? Where will I go?"

"Is it mine?" (about various objects)

"I'm on vacation?"

"I'm not going home today. I like it here? Yes, I like it here."

When I was on break I'm told variations on the following occurred:

"Where's Amanda?"

"She's on her break."

"Amanda's at Walmart. Where's Walmart?"

"It's in Rutland."

"Where's Rutland?"

"It's about half an hour from here."

"What's a Walmart?"

"Stephen, you know what a Walmart is."

"Which Walmart? Where?"

"It's in Rutland."

"Where's Rutland?"

I have often seen "asking repetitive questions" used as an example of ASD people's inappropriate social behavior. Setting aside the fact that Stephen was a very nervous person and I would never criticize him for trying to calm himself by confirming that the world continues to work in the same way every day, I felt close to him when I was answering his repetitive questions. I was very stressed out and I can't imagine that session without Stephen's presence and our conversations, which were like verbal massages--straightening out our minds by moving them carefully along the same old tracks. I love old tracks. I miss Stephen all the time.

I guess you could say that even if Stephen had the perfect social skills to socialize with me, that doesn't matter because I'm not normal, but for one thing I know a lot of normal people who like Stephen, and also it's not fair to say that only some people deserve to have their reactions to other humans be so important that they become the yardstick by which other people's abilities are judged.

2. What this is not

Before I start I should say that I'm not trying to write about what autism is and outright deny that there are social issues. I have in the past made the argument that social impairment in autism doesn't exist--that minorities, especially people who perceive reality differently, can be socially isolated without having an impairment that is objectively social at heart. However, I put forth this argument without being sure I was right. It's an extremely complicated question.

What I'm trying to do in writing this piece is destabilize the idea that people with autism (or, for that matter, anyone else) have "impaired social skills" or "no social skills." I think that's a very vague and dangerous thing to say.

When a person is labeled as "lacking social skills" this can cause other people to treat them as less than human. Many people with autism have stories of expressing their feelings or opinions, only to be told that their feeling or opinion is a result of their poor social skills, and therefore isn't valid. (This is a good example of what I mean.)

Another problem is that when you look at a person who isn't fitting in and say, "This is happening because they have bad social skills," you don't acknowledge the fact that everyone contributes to one person's social isolation. Basically, I'm trying to present something called a social model of social failure. The truth is that no one is naturally fated to be socially unsuccessful based on who they are.

This is not a tightly written argument where each section leads to the next. It's a collection of loosely related arguments, many of which are in the form of anecdotes.

1. What are social skills?

When I was in eighth grade, my history teacher mentioned an interesting piece of trivia one day during class. "There's this disorder called Asperger's and people who have it have no social skills." I don't remember why he said this, but since I had recently been told that I had "Asperger's," it was a little more than interesting to me.

I was going to say that saying someone has no social skills is akin to calling them a corpse, but actually I guess some people open up to corpses in a way they don't open up to anyone else. So maybe corpses know something we don't.

I am socially impaired because I'm Autistic, but I'm also socially impaired because I'm gay. Some people are uncomfortable when they learn that someone is gay, so I risk an awkward silence if I mention certain parts of my life. This means I can seem quite withdrawn in certain environments.

If an American teenager's parents are from another country, don't speak English well, and aren't involved in American culture, that person is socially impaired if they go to school with kids who all have American parents.

We can talk about blindness and say that in a country where everyone was blind, being blind wouldn't matter at all. We can say that being blind matters less when blind people are accommodated by people who aren't. We can say the same thing about dyslexia. But while difficulty is constructed, impairment is not--a blind or dyslexic person lacks an ability that other people have.

But what does a person lack if they have no social skills? How can anyone be bad with people? There is more than one person in the world.

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

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

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

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

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

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

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

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

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

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

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

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

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

Why I Dislike Person-Free Language

I know this sounds like it's going to be a really intense/hardcore post, however I'm actually about to take a nap so this is very scattered (I was going to be like "I'm writing some thoughts that I'm going to expand later"--but actually I'm just going to write everything I think in as disorganized a way as possible)

1. it is one thing for another ASD person to refer to me as "autistic" (or "Autistic," which I find weirdly touching) but it's quite another to be in a psych class and have my teacher talking about "autistic kids" in a very othering way. And I can't help but feel that if she said "kids with autism" it couldn't sound quite as othering as it does. And I find myself always, always saying "kids with autism" (or "people with autism" when I'm not talking about kids)--although I'm totally fine saying "ASD kids," "PDD kids," "disabled kids"--well, sometimes I say "kids with disabilities" but it's more just because I like the sound of it or something. But "kids with autism" is actually a phrase that's important to me, I don't think I would ever use the phrase "autistic kids" in class, and maybe not at all.

2. furthermore, the word "autistic" used as a noun makes me uncomfortable.

3. I should mention that I'm obviously not trying to criticize anyone else's word use, in fact I know that my frequent (if far from constant) use of person-first language, and the fact that I identify as "ASD" instead of "autistic," are probably minority ways of using language among ASD people who share my beliefs. Just sorting it out for myself, and not trying to say that I think other people are being offensive (I mean, I hope it's apparent that I respect and admire the work of many people who use that kind of language--including the person who I am parodying in my post title, of course).

4. my discomfort with the word "autistic" could be related to the fact that it's a really fucked-up word. In case you couldn't tell, the word autistic means "really into yourself." This implies a bunch of really offensive stereotypes about ASD people which are very pervasive (pun intended) and, I think, very dangerous. In one of my psych textbooks, the illustration for the "Pervasive Developmental Disorders and Schizophrenia" chapter is a photo of a little girl kissing her reflection in a mirror. My professor recently said "autistic kids see other people as objects and only want them for what they can get from them," and this is far, far, far from the first time I've heard a statement like that in my life.

5. well, that is not what I'm like and it's not my belief about what other ASD people are like either. Some severely ASD people may not be running up to other people and hugging them and saying "I love you," but that's the case for a lot of people with severe disabilities, and it doesn't mean they're incredibly self-centered, it means they're severely disabled. Lots of severely disabled people do care about other people, and it's hateful and dangerous to claim that they don't. It's just weird to me that, for example, the word "idiot" is considered by some disabled people to be offensive because it used to be a clinical term for intellectually disabled people--and yet no one is upset by the word "autistic," which has a very obvious root in the word "autos," and seems to me to be clearly offensive. I mean, I know we can't examine everything, but this seems like such a major thing.

6. then the question is, why am I calling myself ASD when ASD has the word autism in it? Who the fuck knows. I guess because I feel like when I'm saying "I'm an Autism Spectrum Disorder person" it sounds like I'm saying, "I have a disorder/am disordered, the name of my disorder is Autism Spectrum Disorder"--not straight out, "I'm autistic [self-obsessed]." Also, the word "person" is in there, you know? You do not hear professionals saying "person," you hear them saying "autistic kids" and (when they remember us) "autistic adults" and so, so frequently, "individuals," "clients," "consumers"--well, fuck that, what about HUMANS WITH DISABILITIES? You know, LIVING BEINGS? With feelings and stuff?

7. even though the word "sufferer" is obviously awful, do you agree that there's a difference between saying "a cerebral palsy sufferer" and "a guy who suffers from cerebral palsy?" Because those feel worlds apart to me, and I almost don't mind the word suffer that much in the second phrase--like, it's obviously incorrect, but there's a difference between something where I'm like "well, actually..." and something that makes me feel really uncomfortable and alienated from the person who said it.

8. I call myself: an ASD person/a person who has ASD/a person with ASD; a disabled person/a person who has a disability/a person with a disability; a stimming person/a person who stims; a developmentally disabled person/"/"--except, I mean these are the things I call myself in situations where I feel I can use those terms and be understood. I very occasionally say "autistic" when I'm speaking, because it's easier, but only to people I know really well. When I feel like I can't use any of the terms I like, I say "Asperger's" with it sort of sticking in my throat, or I say "I have autism"...

9. ....and, I just used up my whole nap time. SHIT.

Unnecessary things

Dave Hingsburger made a really good post about how he wanted a book that he couldn't reach from his wheelchair, and the bookstore employee got annoyed because he was picky about which edition of the book he wanted her to reach for him. I feel like it's good not to feel that you only deserve things that are necessary. Especially because it's hard to tell what's necessary.

I have ASD. I also probably have some not-worth-diagnosing condition that makes me feel faint and on a few occasions has led to me losing the ability to see. I guess this is called "chronic low blood pressure" or something. This summer, my vision almost completely took its leave of me while I was in line at a grocery store. I felt confident explaining to the people around me that I had to leave my food on the counter, go outside, and sit down. (It didn't hurt that on my way outside I tried to walk through a glass door.)

Mostly this doesn't affect me, because I leave situations where I am getting faint, or avoid getting into them in the first place. ASD doesn't always affect me badly either. But the other day, at work, I was told to do a different job than the one I had been hired to do, one which was very taxing for me in terms of sensory issues and Feeling Faint. Although I've never thought about Feeling Faint, or thought much about ASD, when applying for part-time jobs in the dining hall, it would never have occurred to me to apply to do this other job. It's not something I have a word for, I just find several aspects of it to be very difficult over long periods of time.

Anyway, I didn't lose any vision while I was working there, and my Feeling Faint is not really a severe or chronic enough problem for me to be able to explain. I doubt the Disability Services office or anyone would advocate for my right to have a job that isn't upsetting to me for sensory reasons. However, I'll be very upset if I'm pressured into doing that job again, and I will make an effort to insist that I be allowed to do the job I was hired to do.

The problem is that it isn't a necessity for me to avoid anything that might be difficult for me on a sensory level, or a Feeling Faint level. So I don't feel that I deserve respect and help, objectively, the way I did when my vision went out. But the truth is that if I'm forced to remain in a difficult situation for hours, it is really bad--so in the long run, I think it becomes a necessity that my impairments be acknowledged and accommodated.

Also, I don't think it's even going far enough to just admit that some apparently unnecessary things can actually be necessary or become necessary. What about things that aren't necessary like Dave Hingsburger's book? Nothing horrible will happen to him if he has to have an ugly cover instead of the cover he likes--but shouldn't disabled people be able to ask for help that will give us the same range of opportunities as a nondisabled person?

To continue pelting you with examples, I'm afraid to meet with professors when I'm having trouble in class, because I'm concerned that my communication and body language might cause them to resent me and give me a worse grade. Not meeting with professors isn't a huge deal; I always get by. But if I could meet with professors, I could do better. If I was as smart as I am, but didn't have ASD, I could do better in school. I'm going to try to meet with professors and advocate for myself if they make up stories about who I am. I deserve to do as well in school as a regular person can.

College Accessibility for ASD People

When it comes to ASD, the medical model is woefully inadequate.* According to the medical model, some really specific thing (like extra time on a test, or magnifying or screen-reading software) can make the person learn just as well as other students. Even if the professor doesn't believe the student's disability is real, doesn't like the student in particular, or doesn't believe disabled people should be going to college, they can be forced to allow the accommodation. And all is well! Well, not really, if the professor is an asshole, but that's the theory.

But with ASD there is not something you can ask for like this. The professor has to be okay. If the professor dislikes or disrespects a person because the person moves or talks in a nonstandard way, the person is fucked. In my first term of college I had a professor who really disliked me and formed opinions about what I was like because of my way of speaking and talking. I wasn't blameless--I accidentally came late to the first class, and forgot to turn in an assignment (which I had completed; I just forgot to turn it in)--but my professor took my mistakes and combined them with my ASD presentation to create a narrative where I was lazy and didn't care about the class, even though my other actions showed that I did care. He was openly contemptuous to a degree that made me cry, but because I hadn't been a perfect student, I felt like there was nothing I could do. I felt I had to drop the class; this would mean I'd have less than the required amount of credits, but I was too anxious to do the work.

But fortunately, my professor referred to me as "really weird" when he was talking to another student, and she told me what he said. After talking to the head of disability services (more for emotional support than anything else), I confronted my professor. By stating outright that I knew he didn't like me and had insulted me to another student, I was basically able to force him into being nice to me for the rest of the term. He claimed I was imagining his dislike of me and the other student was lying; but I wasn't looking for an apology, just a less terrifying professor.

Hooray! But most professors are not dumb enough to insult a student to another student, so most ASD people in this situation wouldn't have such measurable proof of malice. Also, it was really lucky that he happened to say this to someone I was friendly with. ASD students are probably less likely to be friendly with their classmates, so they'd be less likely to be told that their teacher insulted them. And they'd be less likely to ask their classmates for their opinions on whether the teacher is acting inappropriately. I am super lucky that I didn't have to drop the class.

An ASD student really, really needs professors who can interact with a person who acts different without having a total overreaction. I would say that my school is really accessible to me because (except for that one glaring exception, who has fortunately now retired) most professors don't overreact to my difference.

(*Of course, the medical model is actually woefully inadequate for other disabled students as well. I previously mentioned how my friend was patronized by a professor because he has cerebral palsy. The disability services office can provide him with a notetaker, but not a professor who understands that slurred speech isn't indicative of low intelligence or immaturity.)

Why I don't like ASD memoirs, and other stuff

Someone sent me Tim Page's piece about having Asperger's in the New Yorker. I read all of it and it kept my interest on one level but at the same time it was really, really boring. It's funny that I should say this when my blog is so incredibly self-centered, but it was too self-centered for me. I should mention, I'm sure Tim Page is a really nice person and all, I just don't like this genre of ASD memoirs or maybe I just don't like ASD memoirs.

I don't see the point of writing a piece (and now I guess a book) that just seems to be a list of all the weird things you did when you were a kid. Is that weird of me? It's funny because I write so much about having ASD, and when I write fiction it's always about people who are off in some way or another, so it's not like I'm avoiding the subjects of ASD or weirdness. But when I write stories I guess I'm trying to wrangle some kind of beauty out of weirdness or find new things to say about it. And when I write stuff about ASD I am interested in either expressing my opinions about disability or talking about ways to deal with specific impairments. I guess the Tim Page stuff bores me because I feel like there's no movement in it.

As I say about a thousand times a day, my favorite book about ASD and possibly my favorite book ever is Send in the Idiots by Kamran Nazeer. I guess it's technically an ASD memoir, but what's the difference between it and this? I think I like Send in the Idiots because it is about functioning. Some of the subjects of the book are "lower-functioning" than Tim Page, but while Page focuses on all the stuff he did wrong while he was growing up, Nazeer talks about how he, his friends, and their families find ways of getting around what's hard for them. One of his subjects committed suicide, but Nazeer tells us how she taught herself to ride a bike when her parents were at work, to surprise them, and how she learned to read a bus map through trial and error.

Also, when Nazeer talks about how people made fun of Elizabeth at the mall or Randall's boyfriend didn't respect him, I don't get the impression he thinks That's Just How It Is For People Like Us. He says he wanted to kick Randall's boyfriend in the shins. Nazeer launches into long, beautifully pedantic explorations of what a conversation is (with the implication that ASD people are missing out), but he also beautifully, pedantically explores what a dick Randall's boyfriend is for treating Randall like an okapi instead of a person.



completely unnecessary visual aid because okapis are rad-looking

Nazeer's book doesn't focus on his experience like Page's New Yorker piece does, but I don't think that's really the big difference. I think it's just old social model vs. medical model, after all. And that is an inaccurate way of talking about it because medical model means freaking out about how bad a disability is. But I think freaking out about how interesting a disability is, if less dangerous, can be just as annoying to read. I don't feel like looking at one person by themself. I would like to hear some opinions, about goodness or life or love or something. Page's piece is informative if you don't know anything about AS but Send in the Idiots altered my brain. I reread it at least once a year, I love moving my mind through those beautiful squares, if a book can be a home it is my home. It changed what I wanted to do with my life. And also, what I thought my life was.

I never had a blog with tags before and sometimes I get carried away. I like "kartheiser is magic" and I got excited when I realized I kept posting about The Sound and the Fury so I could make a "faulkner" tag. But my favorite tag is "how to be human" and I don't know exactly what it means but all of my posts that I think are worth reading are tagged "how to be human." Sometimes they're about how I try to work around certain aspects of ASD, sometimes they're about things that I think are ableist, and sometimes they are just about my attempt to figure out and implement a moral course of action in some situation. I guess I think those are the interesting things about ASD and ASD in the middle of nowhere is kind of boring. If a disabled person lives in the middle of a forest they're not even disabled, unless the trees think they're a disabled version of a tree.

In conclusion I will just tell you something that's only mildly related and maybe it isn't clear why I think it is. Today when I was walking back from my horrible exam, I thought about how I would visit my friend in his room last year and the year before that. Often he was asleep or not there and I would feel like a creepy stalker; many people have that effect on me, but him more than anyone else, because I just long for him like I long for Send in the Idiots and the particular kind of sneakers I have gone through ten pairs of. Anyway, when he was there, sometimes he was doing physical therapy exercises with his jars of putty. He had all these jars of putty that were different colors and the different colors indicated that the putty had a different consistency and was appropriate for a different time, or different exercises, or something. All I know is that I would sometimes start playing with the putty without thinking about it, and my friend would get mad.

When I came by and my friend was doing his exercises, he would often be watching anime on his computer and he'd always be embarrassed about it. It was always really bad anime about ghost hunters or something, and my friend is kind of a snob, but sometimes he wouldn't be too embarrassed to let me lie down or sit down and watch anime with him. He'd try to explain the plots to me, sometimes.

Then sometimes my friend would go to the vending machine. When he walked around school, he would always sing. His voice has a crystalline quality and he always sang folk songs and show tunes with the result that the words, slightly smudged, ended up sounding ghostly and sweet as he moved through the halls. On his computer, checking Facebook, I'd know my friend was coming back when I heard the heavy uneven sound of his steps trudging under the clean white verse.

Like a person, part three

This is just messing around and may not be organized very well. But basically I'm thinking about the idea that if someone has a disability other people are supposed to be okay with them doing things that they wouldn't be okay with otherwise. This idea can be seen on the Internet, when people vigorously attack the strawman of "people who pretend to have Asperger's as an excuse to be assholes." The implication is that it's okay to act like an asshole if you really do have Asperger's but we have to be careful to keep people who don't have Asperger's from getting this special Asperger's right that non-Asperger's people don't deserve.

Last month when I went to an Edinburgh and Lothians Asperger's Society meeting, this idea was taken for granted again. We were talking about police harassment of ASD people. One guy shared how he walks around a lot at night, and was stopped by the police several times and questioned about his "suspicious behavior." He almost got in trouble because his answers to the questions were too literal and the police thought he was being rude. Everyone began talking about how police could be trained not to treat ASD people badly. Then another guy spoke up and said that in some areas people with ASDs have a badge that identifies them as ASD, and that they can produce the badge if they are in this kind of situation. He said he thought this was a good solution "because if someone looks suspicious and the police are questioning them, they might say they're autistic as an excuse." The implication is that if someone "looks suspicious" and their reason for looking that way is not a diagnosed disability, they must actually be suspicious.

I disagree. What if someone is a little odd, but doesn't have ASD? What if they look suspicious because their husband just died and they're in shock? What if they have undiagnosed ASD? I generally think that people are not very good at judging what "suspicious behavior" looks like, and while ASD people are one group that gets fucked over by this, we're not the only group. It's not necessary for the police to be harsh on people just because they look weird, and it's ridiculously medical-model to make people prove that they have a good reason for looking weird, instead of for the police to just approach weird-looking people in a gentle way instead of making snap judgments.

I think the reason there's all this guarding of ASD identity, and panic about people using it when they supposedly don't have a right to, is there's this idea that if someone has ASD it's okay for them to go around punching people in the nuts and robbing banks. At least, that's the way people act about it--that if we accepted a wider range of behavior, then we'd have TOTAL CHAOS. But I am not okay with anyone hurting other people and I don't care if they have a disability or not. I think a lot of people feel this way. Which is why the whole thing is stupid.

I'm not doing a good job explaining this and will maybe come back to it later, but I have two stories that I think are interesting:

1. When I was in ninth grade, I was friends/sort-of-girlfriends with a girl named "Joan" (not really). She frequently said and did things that were really mean and really rude, but it never, ever seemed to come out of malice, just from not thinking about what she was doing. Like me, Joan didn't really have a sense for what was hurtful and had to put in effort, and at that point, she didn't put in the effort very much. (She has a diagnosis of ADD and I'm hesitant to start armchair-diagnosing her with other stuff; she was under a lot of pressure at that age and that may account for how easily she got upset and how insensitive she could be to other people.)

Anyway, Joan really wanted to see the movie Saved and she sent me a link to the website. I went and looked at the website. When I was younger, loud noises really upset me and made me feel embarrassed, so I had an aversion to watching videos or listening to music, or really doing anything that involved sound if I didn't have to. I also really don't like to watch videos or listen to music when other people are around and I think I may have looked at the website when I was at school so that's another reason I didn't watch the trailer. But neither of this is the whole reason--another part may just be that I was in reading/looking at things mode, and didn't want to switch to a watching things mode. This was all very unconscious stuff and I didn't consciously think about my decision to not watch the trailer. But for the record, it was an ASD thing.

I told Joan that the movie looked good, and she assumed I had watched the trailer. A few days later at school, she made a reference to something that was in the trailer, and when I didn't get the reference, she was really mad; she felt that I had lied to her. She brought me to the school computer lab, where there were some people, and started to make me watch the trailer, and I panicked and left. Later, Joan wasn't talking to me and I (tearfully, probably) kept trying to get her to stop being mad. I'm not sure I was even conscious of why I didn't want to watch the trailer, so it was hard to explain that I had acted out of discomfort and panic rather than because I didn't care about her interest in the movie. However, I guess at some point she realized that it was related to me having Asperger's, and said, "Oh, it's an Asperger's thing?" At that point no one was in the computer lab, so I steeled myself and watched the trailer with her, and we were reconciled.

If you can't tell, what you are supposed to get out of this story is that if someone does something that you find insulting, but the person really likes you and doesn't seem like they would want to insult you, and they seemed to be very emotional and acting out of instinct when they did the thing that insulted you, you probably shouldn't be insulted because they probably had a reason for doing it that had nothing to do with you. And in my opinion, it's dumb for you to need to know what the reason is in order to not be mad at them, because there isn't only one possible good reason for doing something. If I had an aversion to movie trailers for some other reason, would Joan be justified in treating me that way? I don't think so.

2. For about a year, my best friend A.T. and I have been talking about maybe living together after college. This summer we were doing something or other in the city and while we were walking around, A.T. discovered that I thought it was feasible to drive from New York to Washington state, and said "Are you joking?" This isn't actually the whole thing; it's sort of the last straw. Basically A.T. is good at cooking and taking public transportation and finding her way around and I am really incompetent at all of those things and almost always rely on her to guide me through them when we are together. And sometimes I ask questions that she thinks are shockingly stupid.

As we were getting on the train to go to her house, A.T. said that the only reason she was sort of leery about living with me was that I had so little common sense and wasn't able to find my way around. She said that she could never rely on me to meet her anywhere, and would always have to help me with things and worry about me getting lost. She said that since I'm a year older than her, she hoped I could work on these issues in the year between our graduations, so I would be better at it by the time we started living together. When she said this, I was all hurt and acted passive-aggressively pissy the whole time we were riding the train, and we ended up sort of having a fight.

I guess this story is not quite as clear as #1 because it's hard to tell what you're supposed to be getting out of it. Well, what I get out of it is that it's a story about me being self-pitying and thinking that I deserve special rights because of my ASD. I don't think it was appropriate for me to pick a fight with A.T. because she said those things. No matter why I have those challenges with common sense and getting around, they might be hard for someone else to live with. They don't become less challenging because I happen to have ASD. A.T. doesn't have a responsibility to be okay with things that would otherwise bother her, just because I have a disability.

What a messy post. Just like I expected. Anyway, what I'm trying to say is:

A. If someone does something that offends you, you shouldn't get mad at them if they don't have bad intentions.
B. If someone does something that's weird, you shouldn't have a negative reaction if they're not doing something objectively bad.
C. If someone does something that bothers you--not because you think they're being "weird" or "offensive," but something quantifiable that they do that bothers you--it's okay for you to say that it bothers you and try to avoid being bothered by it in the future.
D. You should apply these rules to everyone.

You're not a very good vampire, are you?

Jason Stackhouse: There's a reason things are the way they are.
Bill Compton: Yeah. It's called injustice.

Terrible Hair Man, you win!

I think disability rights is interesting partly because we're still so much at a point where people try to pretend that oppressing disabled people is just the logical way to behave. As a gay person, I'm pretty used to people deciding that I either don't exist or am inherently awful as an excuse to do whatever they want. And it's the same in terms of being invisibly disabled. But no one can pretend that physically disabled people, and people with obvious intellectual disabilities and severe ASD, don't exist.

So what they have to do is just make up stories about what physically and intellectually disabled people are like. Really sad. Really bad at everything. Not worth the time or the money. Or maybe, they themselves think they're not worth the time or the money, so it's okay to not give them any. Way too many people try to pretend that it's somehow treating disabled people equally to not hire them or not give them services. And the way they set up disabled people as being worse at things is by utilizing a rubric where things non-disabled people are good at are incredibly important, and things disabled people are good at don't matter.

Ironically they used to do this to gay people too. THIS IS JUST THE WAY IT HAS TO BE! SORRY! I'M JUST BEING FAIR!

As you can see, now that a sort-of-famous (to me) person has commented on my blog, I'm incapable of writing a post that is interesting or well-put-together. But I'll get better again with time.

Politics

I feel like I should add a subtitle to this blog since it ended up being mostly about one subject. But any description of what that subject is would be difficult to produce.

I mean, most of what I write about is related to the fact that I have Asperger's. But "Asperger's blog" could mean some different things. And one of them would be a blog that was just about Asperger's in a void--an educational blog or a blog that offers advice on how to cope with Asperger's, like it's, I don't know, a peanut allergy or something.

Today someone linked to this post on the Asperger's LiveJournal community. It is about being successful in the workplace. Did you know that it's important to be well-liked in the workplace? And that your desk tells people what kind of person you are? And that if you're lucky, a regular person will tell you what clothes to wear so you can look normal?

Also, the worst part of having Asperger's is "not being able to work successfully," rather than social alienation. Cool! It's exciting to learn that I, and most of the other AS people I've met, are too stupid to identify what really bothers us about our lives. I'm so stupid that I've actually had jobs where my AS didn't cause me any problems, and expect to have more in the future. Someone should write a patronizing case study about me.

I know it's dumb for me to be annoyed by the post, because it's not aimed at me. I would not want to work in a place where it mattered if I wore makeup or kept my desk organized. For the record, I do both, but it doesn't matter because I look like this:



I have green hair because I have spiritual reactions to color. I draw and write on my pants because it is calming and when I look at them I'm reminded of things that make me happy (like "I love God," or "I love LV," or interesting thoughts I had, or song lyrics). I wear shoes and clothes that are soft because it's hard for me to concentrate when I wear things that are too tight or have a hard texture. I am happy with the way I present myself because it comes out of knowing who I am and what is important to me. I don't need a regular person to tell me that a lot of these things could keep me from getting certain jobs. But even if I didn't know that, it would be stupid to assume that I only look this way because I'm too impaired to know better, instead of because it means something to me.

The woman who wrote this post assumes that AS people have no particular attachment to the way they are and the things they like, and that it wouldn't stress them out or upset them to change those things. Actually, I think she is in the minority if completely changing her wardrobe didn't affect her mood or her ability to concentrate. I also think she's in the minority for not being offended that some random person told her to start wearing makeup!

I'm not afraid to say it: it is completely horrible and ridiculous that a person's work success depends on whether they wear makeup, or whether they water their plants, or whether they are well-liked. Sorry. Now you know. I think it's fucked up. I don't exactly go into office buildings protesting this--it's not the most important issue on my radar--but yeah, it stems from really shoddy ideas of what's important.

This post is called "Politics." What does this have to do with politics? Well, AS people are hurt by the idea that you need to look and act a certain way to be a good worker. So are intellectually disabled people, for that matter; they are frequently as capable as anyone else, but because they don't seem "professional," or because they are impaired in areas that most people aren't impaired in, other people perceive them as Too Difficult to Bother With. An example of what I mean about impairment is that if a non-disabled person gossips about everyone and is always late, that would be seen as more okay than an intellectually disabled or ASD person needing to be told something slowly, or needing to have something written down. Even if in the long run the non-disabled person causes more trouble and is less productive, the disabled person's problems will be seen as a bigger deal just because they're not "normal" problems to have.

The idea that people who are normal/"professional" are intrinsically better hurts a lot of people--not just people who are disabled, but people who are different for other reasons, some reasons that are considered political (like being an ethnic minority or being gay) and some reasons that aren't (like being nerdy or having bad grammar--the latter of which some people would identify as a class issue, and therefore political, but when you get down to it's hard to find any reason that isn't a little bit political).

Anyway, like I said I can't really do anything about this, and it is something that everyone in the world notices and complains about when they are 15 years old. And of course I frequently try to pass as normal in situations where it will make my life easier, and would be happy to advise any other invisibly disabled person who is trying to figure out ways to pass better. Passing is smart sometimes. That's the world we live in.

But I could never write a post about passing where I ignored the fact that it's totally fucked up, and I could never write a blog about Asperger's that was just about passing as if passing is a completely normal and innocent part of life. It's not. It is something we do because we live in a world that's a bad place. So while this blog is not political in a conventional way, I think it is always sort of political, because it is mostly about how to live in a society that doesn't value you, and how that affects you. I know that AS is a problem because people make it one.

Like a person

My post yesterday was supposed to be about something else, but I got distracted by the fact that in high school my homosexuality created "special needs" that I had to advocate for. I think it's a funny story and also shows that, while disability is real, many of the worst aspects of having a disability aren't innate to being disabled.

My friend Niyatee said that she interacts with me as though I don't have AS, and she wondered if that was ableist. I don't think it is. At the same time, I like that she thought of it and doesn't buy the idea that people with disabilities, or any difference, should be treated "like everyone else." The "like everyone else" model actually puts a lot of pressure on people who are different to reduce their difference to one very measurable, nonthreatening thing, and be "like everyone else" otherwise. For example, for my teenage self homosexuality couldn't just be as simple as having a girlfriend or wife in the future while a boyfriend or husband was in everyone else's. Because I was attracted to girls, it affected many aspects of how I related to my peers. I ended up feeling like a failure because I couldn't keep my homosexuality "to myself," as I saw it. It was messy. It spilled out into other people's lives.

There probably are lesbian teenagers who have completely asexual friendships with straight girls. Similarly, there are disabled people whose only difference from nondisabled people is that they are in a wheelchair; and while it's hard to find an ASD example of a "like everyone else" disabled person, there is probably someone out there who has developed good social skills and doesn't have trouble with routines and obsessions, but has to use typing to communicate. If you can accept that this person types, you're good; otherwise you can treat them like...well, you know.

One of my favorite books contains the gloriously inarticulate sentence, "Mike needed to treat Randall like an autistic person. But he also needed not to treat him that way." The book is Send in the Idiots by Kamran Nazeer, and Mike and Randall are based on a real couple. Mike was great at advocating for Randall when people tried to bully and manipulate him, but he also patronized Randall, overestimating his guilelessness and dismissing his poetic talent as a savant skill. While Mike was admirably attuned to Randall's impairments, he didn't recognize the parts of Randall that didn't fit a stereotype. To supplement Nazeer's incoherence with my own, the best way to treat other people is always "like a person." Not like everyone else. Not like a gay person or a disabled person or a person of color.

My school treated me like everyone else in a way that was damaging. But on the other hand, what would it have meant for my school to treat me "like a gay person?" I guess, based on my dancing and changing problems, you might institute a system where gay students are classified as the "third sex" we were considered to be in the early twentieth century. It would not be standard practice for gay students to change with the same gender; you would set aside another room. If the atmosphere was especially puritanical (the type of school that doesn't allow boys in girls' residential halls, for example), you would have to set aside more rooms depending on how many gay students there were, with one gay boy and one lesbian changing in each changing room so there was no possibility of misconduct.

I have a feeling that if a school did this, it would be seen as a bad thing by almost everyone. Conservatives would complain that the school was recognizing an "alternative lifestyle," while liberals might protest that it treated gay people like another species. I would have liked it--after all, it's a policy tailored to fit my teenage self--but other gay kids would have been embarrassed that it was made into such a big deal. And of course the policy doesn't mention bisexual or questioning students, who would presumably make up a "fourth sex" not allowed to change with anyone. My school ignored the ways same-sex-attracted students were different, but the third and fourth sex system overestimates it, and assumes that all SSA students are different in the same way.

Actually, putting aside the fact that my school treated me like everyone else in a way that caused special needs, once I actually had those special needs certain teachers did a great job treating me like a person. As I mentioned in the previous post, Mrs. M. either understood, or didn't understand but respected, why I had so much anxiety about dancing with girls. She was also supportive when I dealt with my self-consciousness in idiosyncratic ways, like refusing to workshop my plays until my classmates had signed a contract saying they understood that it was natural for a gay person to write plays about gay people, and that they wouldn't be surprised or judgmental when that plot element appeared. As has probably been obvious, my gay person special needs were completely interconnected with my Asperger's special needs, which my teachers were equally sensitive to even though not all of them knew about my diagnosis. I didn't have to invoke a label for Mrs. G. to believe me and help me when I explained that I couldn't learn a dance by watching other people do it. I almost think it was better without a label, because it meant that Mrs. G. didn't think of a book or movie about autism, but just helped me with the specific problem that I had.

My friend John doesn't believe I have Asperger's. He says that I seem normal and people are overdiagnosed with trendy disorders. But he doesn't make a big show of being amused or baffled by the way I talk, which is something annoying that most people do when they don't know I have AS. This summer, John and I planned to meet in New York City, and based on what he already knew about me, he assumed I would have trouble taking the subway. He offered to take an unnecessary ride so he could find me at the train station and I wouldn't have to take the subway alone. This is a really good example of knowing and thinking about someone's challenges, without making a big deal out of how they are different. And I couldn't care less if John thinks I have Asperger's, because he treats me like a person.

One of the first times I talked to Niyatee, she kept saying how she liked the way I talked because "you just say things straight out." I said that I wished everyone liked it; I actually didn't, because it made it hard to write emails to professors or prospective employers. Then Niyatee said she felt embarrassed because she'd forgotten that I had Asperger's and had assumed I talked the way I did on purpose. This is the only time that she ever needed to consciously think about my AS, and because that was more than a year ago, she thinks it means she might be treating me "like everyone else." But actually, all it means is that when she finds out things about me she just finds them out, and doesn't feel the need to divide them into piles called Amanda and Asperger's, which is good, because those are really difficult piles to make and it also doesn't matter.

Special needs

When I was in high school I was one of the only students who was openly gay. I was extremely sensitive to the idea that other girls might see me as a predator, and I felt like the only way to prove that I wasn't was to not be any more attracted to them than they were to each other. But I couldn't turn off my attraction to girls, and the more I put pressure on myself to be asexual, the more uncomfortable I was interacting with girls, even girls I didn't find attractive. This led to me having special needs.

My special needs were impairments in doing things that most girls don't find difficult: touching girls, and being in a room with girls who were changing. Every year I was in the winter musical, where one was expected to do both of those things. I had to figure out how to accommodate my special needs. Instead of changing with everyone else, I would change in the bathroom. The dancing scenes posed more problems. Like many high school musicals, ours had a mostly female cast, so most of the dancing couples were female/female. In tenth grade, I actually went along with this, but it was really difficult because I couldn't bring myself to actually plant a hand on my dance partner's waist. Instead, I let my hand hover in the general vicinity. During practice, I would let go of my partner's hand every time we stopped dancing, lest I be suspected of holding on too long. In eleventh grade, I was lucky enough to be paired with one of the few boys. In twelfth grade, I took matters into my own hands and under the question, "Would you mind being cast as someone of the opposite sex?" wrote, "as long as I don't have to dance with a girl."

The dance teacher Mrs. G. was incredibly kind to me in ways I'm still grateful for, but I missed rehearsal one day and the next day I discovered I had been paired with a girl. Maybe I'm being melodramatic in retrospect, but if I remember correctly, it was a girl I had a huge crush on. I knew this could not happen. "NO," I said. "I AM NOT DANCING WITH A GIRL."

Mrs. G. looked puzzled. "But your character is a girl. You're not dancing with a girl as a boy." My character was originally a man, but Mrs. M., the wildly talented drama teacher, always thought up new blocking and line readings so that the girls at my school could play our characters as girls, instead of trying to imitate a standard performance.

And fortunately, Mrs. M. was there right then. Mrs. M. was also my English and playwriting teacher, and she had read all my miserable scenes and journal entries, and she had witnessed my incredible embarrassment when another girl read the part of my husband in an absurdist theater elective. "It's not being a boy. Amanda can't dance with a girl," she said, and that was that. Unfortunately, Mrs. G. split up two friends who were dancing together, and I didn't know how to explain to them why I was so insistent. They weren't mean about it but they seemed confused, and I cried when I was driving myself home, feeling guilty about being a burden.