Anna is not that nice

I work for a woman named Anna who people are always saying is sweet and nice. Her dad gave me permission to blog about her, but he might not have done that if I told him that when another client at her day program kept saying, "Anna's nice, she's a good girl," I said under my breath, "No, not really." I hope no one heard this because it doesn't sound very complimentary of Anna, but I don't think saying she's a good girl is very complimentary either. I can't fully explain why it annoys me when people who don't see her much describe her that way.

Obviously, my reaction isn't because I think Anna is a mean person. She's just fine on the sweetness/niceness scale, but it's not something I would say when describing her. I would say: she's very particular about doing the things she likes and having her favorite things around her. She's kind of dignified and she plays her cards close to the chest, maybe because of her disability or maybe just because it's the dignified way to be. There are a few things that she immediately reacts to, but usually when Anna meets someone or has an experience, she takes a while to process the situation and then shows how she feels later. She likes throwing things and ripping up napkins and paper.

First and foremost I would describe Anna as someone who likes to have her own way, which I think is not a problem because Anna's way is pretty cool and doesn't involve making bombs or setting people on fire. I like that her parents don't treat her as someone who has "behavior problems" just because she has strong preferences and is good at expressing what she wants. There is a lot to commend about a disabled person who is confident in herself--so many people think there's something sinister about a disabled person who really likes some things and really dislikes others. Even writing this, I feel like I have to shy away from triggering some stereotype of a person who will scream and break things because they didn't get to eat their favorite kind of sandwich. It seems like there are only two ideas about disabled people--an overwhelmingly good/sweet idea, and the idea of someone who has preferences, and is therefore totally dangerous or a burden on other people (because people have to accommodate them which is a fate worse than death).

Where's the middle ground for someone who has lots of preferences, but in a way that the people around her thoroughly enjoy? Or who isn't mystically "full of love," but is just as capable of love as everyone else?

I'm not really sure, and maybe I'm the one limiting Anna by scowling inwardly when people say how good she is. But it just seems like a way of describing someone that is fundamentally impersonal and ill-fitting, especially for her.

hurt power and disability 2; or, I HAVE A LOT OF FEELINGS

I always feel like I'm really hard on my parents here when they're pretty great people and also overpathologizing your kids is such a stereotypical rich person thing, I can't even. But I've written a lot about how I think it's super important for disabled people to be able to make bad decisions without that being seen (especially in the case of people who are receiving services or "dependent" on someone) as a reason that they shouldn't be allowed to make decisions or a reason that their self-expression and decisions should be seen as "part of their disability" in a way that means those things should be suppressed or ignored.

And I feel that is kind of how I was raised; things that in retrospect seem pretty innocent, or at the most things that I would try to stop my kid from doing but would see as funny and not that big a deal, began to feel like ammunition against me and evidence that I a)was someone to be worried about and b)shouldn't be allowed to make my own decisions. Which does a lot to explain the Supercrip Mongoose you see before you, because I feel that if I need support, I won't be able to have anything.

Two entire humans told me they liked and related to the part of my s/m post that talked about submission as a way to experience parts of yourself that you dislike and/or avoid. I was pleased because that was the part that I totally cribbed from other people and mumbled through to avoid saying anything dramatic and getting it wrong. It seems like dominance would be the opposite, i.e. experiencing power that you don't have in real life and sweeping weakness under the rug, but in fact I feel like it's exactly the same failure embrace just in a different way. After all I do stuff with people who know me so it's not like anyone's under the impression I have super good brains and am really tough.

What happens is not exactly a good thing because it means I really overattach to people I do stuff with (and also develop the biggest savior complex in the known universe, which is gross), but for someone to relate to me in that way and vice versa feels like a really radical acceptance of me as a whole person, which is a huge departure from the tendency to either look at what someone does and deny their disability, or look at what someone doesn't do (or does wrong) and say that that's all of them and means something about how they should be treated. For someone to think that it's okay for me to occupy a certain role and make certain decisions, when they know I have all these cracks, is an acknowledgment of The Elevators in me.

Autism Unawareness

As you're unfortunate enough to already know, it is Autism Awareness Month. I've written a tumblr post and a facebook status encouraging "autism unawareness," which is kind of an attempt to make fun of Autism Awareness Month in as few words as possible, but I'm also wondering if Autism Unawareness is a reasonable goal, joking aside.

First off this would seem like a ridiculous thing to say. Obviously disabled people need help with things, or at least need someone to recognize they will be doing things differently, or that things feel different. This is something that non-disabled people should be "aware" of. Right?

I more or less agree with this sentiment, and I also find that when, in my Autism Unawareness posts, I have suggested that people without autism get to know people with autism without thinking about their disabilities, I am beginning to resemble a line of thinking that many disability groups use, but which the Autistic Community tends to dislike and reject. Basically this is just the idea that people with our disability are just like everyone else and should be treated as "people not disabled people" whatever the fuck that means. The problem with this attitude is that's it like: a)disability isn't important, b)disabled people should be accepted and included in society because disability isn't important, c)if God forbid some disabled person's disability is important, then...where does that leave that person? If they really, really aren't like everyone else, can they be accepted too?

However, I think it is possible to say that you should be "unaware" of someone's autism, in the sense of not having Autism Awareness about their autism, without saying that you shouldn't accommodate people or that you should ignore the important of their disability to their life and identity. I think part of being a decent person is the sensitivity to understand what other people need and experience, and what's important to them. A person who treats everyone as an individual, instead of assuming people are like them, and also has knowledge of different oppressions, knows most of what they need to know to live in a world with people who have autism. Much more than any Autism Awareness brochure could ever teach them.

And personally I think it's better that someone be 100% unaware in every way than that they have Autism Awareness, if I had to make a choice--although I'd rather they be Autism Unaware, and also be sensitive and decent.

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.

something else about Skins

(stfu you can't imagine how much I love this show)

in 3x04 when Freddie finds JJ at Pandora's party and looks after him--I generally hate Freddie, but he's really sweet in that scene. and the whole fact that Freddie, Cook, and JJ all use the phrase "locked on" to refer to instances when JJ becomes obsessively upset; then people who aren't in the trio, like Emily, also start using the phrase about JJ when he is upset.

I think this is cool for multiple reasons.

We eventually learn that JJ has a diagnosis of "lower autism spectrum" (is this really what they say in the UK?). But the truth is, we really don't need a word to tell us about JJ. Often, pop culture portrayals of verbal people with ASD are very superficial and behavioral. It's hard to explain what I mean by behavioral, but you'll just have to take my word for it that JJ isn't portrayed like that. It's something like...you could watch a lot of clips of the show and not realize that JJ is written and played as having autism. But those moments of his character aren't at odds with the moments in between, where he certainly seems like an unusual person but it could be a lot of things, or the moments when he's quite stereotypically (but not inaccurately) "locked on" or having a meltdown.

He's just himself, the whole time.

As far as we know (well, I'm only seven episodes in, but still, that's a lot) none of JJ's friends know about his diagnosis. I'm guessing Freddie and Cook probably do, but we're not actually told that. The only time words related to ASD have been used are a)when we learn JJ's diagnosis by seeing his diagnostic papers and articles on autism that his mother has, and b)when JJ is upset and calls himself a bunch of slurs: "Retard! Nutjob, headcase, spazzo, mong, autistic fucking fruitcake, mental basket, shitty, in a fucking cuckoo's nest."

The first instance is kind of cheesy forced exposition, but the second is really interesting because we get a sense of autism not by itself, but as part of a whole group of stigmatized conditions. I think it's really--well, I can't say it's more realistic for everyone, but personally, I think that, assuming you're not part of any kind of Autistic culture, and especially if you are really upset about your disability, it makes sense that you wouldn't really identify as having "autism" or "Asperger's" or "ASD," but just as Not Being Normal. After all the idea of abusing someone for being "autistic" is not as established as abuse against people who are "retarded" or "mental baskets." So abuse against people with ASD is often done in the name of another disability that ASD superficially resembles. And therefore, it's not really strange that almost every term JJ uses in his outburst is a derogatory term for people with either psychiatric or intellectual disabilities, except for "spazzo," which I think is generally an insult based on CP and/or epilepsy; "autistic;" and "shitty."

Anyway, where I'm going with this, and with the fact that none of the other characters so far have ever had a discussion about JJ having "autism" or "lower autism spectrum" or "Asperger's," or whatever...is that the tendency to repeat a bunch of diagnostic labels in fiction, or to have a character who constantly "acts autistic," is often done in a clumsy attempt to educate, or to sensationalize the disability. In real life, people with ASD, and the people around us, don't usually behave like this.

The risk is, though, that if an ASD fictional character just behaves like themselves and isn't stereotypically, classically ASD all the time, and we don't use the word much, then consumers may just say, "Oh, I didn't realize he was supposed to be autistic, and he was just a little weird anyway. It didn't seem to really affect him." Which is annoying, because the character isn't really making a difference then. Plus there's the whole sense that if someone's ASD isn't immediately visible to you, then it's not really affecting them. But how do you show effects that aren't as obvious as a monologue or something?

What I think is really lovely in Skins is that JJ's disabled-ness is kind of like a ghost--although it's not something that people intentionally don't mention, like a ghost, but it's just something that everyone is very used to and doesn't state outright most of the time, and it's also something that isn't always apparent.

JJ has two best friends. This already takes him away from the worst of autism pop culture, where he would often be portrayed with no friends. But we soon see that there is something strange in the way Freddie and Cook treat JJ. They say some things to him that are kind of harsh, when he's being genuine ("She's not looking at you"). Cook roughhouses with JJ in a way JJ doesn't seem super thrilled by. JJ seems obligated to go along with all of Cook's plans*. There's an element of bullying in the way the two of them treat him, like he inherently has less authority or less value. At the same time we see Freddie and Cook's tenderness and sense of responsibility toward JJ when he is distraught.

(*I should note that there are some times when Freddie starts asking JJ to keep Cook out of trouble; the relationship between the three of them is certainly not a one-dimensional thing where Freddie and Cook always control, bully, and take care of JJ, but I think that's a very strong element.)

This is a really fantastically realistic and complicated portrayal of a trio of teenage friends, regardless of the disability aspect. But with the disability it becomes almost miraculous. Without the help of words like autistic or disabled (although Cook uses some words related to mental illness), we get the picture: JJ is guileless--which makes him funny, and easy to use--and afraid to stand up for himself, because he sees himself as inferior to other people--which, again, makes him easy to use and push around. He is very loyal to his friends, partly because he doesn't like things to change and partly, I think, because he doubts his ability to make new friends. Freddie and Cook sometimes treat him in a way that's really patronizing and disrespectful. (And despite this fucked up stuff, all three genuinely care about each other, because in real life friends can treat each other terribly without meaning harm.)

We also see that JJ feels guilty because his mom is stressed out about him. Which is really classic disabled kid stuff--real disabled kid, not TV disabled kid--and is conveyed really briefly and effectively.

So we kind of see JJ's disabled-ness, or what it means to him socially at least, through the way Cook and Freddie treat him and the way he reacts; and the way he feels guilty about his mom, and sometimes hates himself for looking like all those words. We definitely see straight-up impairment. But sometimes we see how the experience of growing up as disabled--not specifically ASD, but you know, "spazzo, headcase, fruitcake, retard"--has in some ways really shut down JJ's sense of what he can be and what he's allowed to pursue.

Also--the scene that started this for me, at the party, with JJ getting locked on. Freddie comes to the party, finds JJ, helps him to come outside, and then tells off Effy for not looking after JJ; and Effy apologizes. What I was originally just going to say is that Freddie and Effy are both talking about JJ as someone who needs this particular kind of support, but they're not using any words that are explicitly related to disability. Which is just an example of something that I like and think is realistic.

But another thing is just the complicated thing of being disabled and having friends who don't seem to need as much support as you need. To paraphrase, for the third time on this blog, a line from my favorite book: "They needed to treat him like an autistic person, but they also needed not to treat him that way." How is JJ supposed to say that Freddie's pissing him off and needs to stop ruffling his hair, when JJ was dependent on Freddie to come and rescue him from the party? Thinking about this really kills me. Gosh (oh my giddy giddy giddy aunt?) I love television.

ETA: Really annoyed with JJ's portryal in 3x09 though.

Regular Person Listening Day

Hi, it's Autistics Speaking Day, which is a thing. Um, well, basically an organization for autism made up of people that aren't autistic--I don't know if you've ever heard of that before, but there's a lot of them. They decided that they should do a thing on November first, called Communication Shutdown, and they thought that people should promote autism awareness and try to think about what it's like to be Autistic by not using social networking sites like Facebook.

Which, I mean,

number one, like disability simulations tend to not be good, because you can't tell what it's like to have a disability just by putting on a blindfold or sitting in a wheelchair or not going on Facebook (which doesn't actually have anything to do with being Autistic)...but you can't tell what it's like, so it's silly to imagine that you can and it's better to just listen to people and treat everyone respectfully,

um, you know,

and, um, I think a lot of Autistic people, when we hear about autism awareness, are like, "well I mean, wouldn't people be more aware if they just listened to us, instead of doing something like this, which doesn't really have to do with us?" So Corina Becker, who is an Autistic person who does a lot of cool things, decided that we should have Autistics Speaking Day which just means that people who have autism could just, like, write or say something, like, on the Internet or somewhere else, just to tell people how they feel about stuff.

I made a post and stuff, it's about the sort of thing I always talk about, nothing interesting, I'm going to link to it in the description of this video.

One thing I wanted to say is just...I mean, when I see the phrase "Autistics Speaking Day" that does make me feel, you know, it makes me feel weird because some people can't speak and some people can't even write.

So, by definition, it has to leave some people out I guess, at least superficially, but, I think, um, I feel like people may see that and say, "Well, the people with autism in my life, they can't write a post, and they can't tell me how they feel." So, um...to people who feel like that, who are in that situation, I think that there's still a way of observing Autistics Speaking Day with the person in your life. And, um, one way of doing that is respecting the person and knowing that the life they live has meaning for them.

One example of the opposite of what I'm recommending is something that one of my psych professors said I think a week or two ago when she was talking about autism. Someone mentioned that one of the kids with autism they had worked with was very focused on like, people's hair, or like, shoelaces, or something, I can't remember what it was...

No, it was trains, which are great, it was actually something that's, like, inarguably cool, but then my professor was like, "Well, you know, that's autistic people, they get really interested in uninteresting things."

So, um, I mean, how does anyone decide what an uninteresting thing is? Like, I don't like the TV show Glee, but my friend likes it, and my friend doesn't like the TV show Mad Men because she thinks that nothing happens. And some people like sports, like, professional sports, and I don't like professional sports, I like comics books and some people don't, um, and, well, I like trains, and I like, um, looking at colors, and some people, um, they just like spinning things and looking at them. People like a lot of things and I guess I don't really like the idea of saying that...

I mean, it's certainly possible to say, "For this person it's become, like, a severe problem that they're always spinning things and not doing anything else." You know, you can say that, but I feel like the level of judgment in saying, "They're interested in uninteresting things..." (coughs) Sorry. I'm also sick, um, in addition to being Autistic.

But um, I think a lot of the time, people have a way of talking about people...I mean really, all disabled people, but often people with very severe disabilities who aren't verbal, people have a way of looking at them and saying, "their meaningless behavior, um...they...I don't understand what they're doing so I think that it's meaningless."

Um, I guess I feel like one thing that Autistics Speaking Day, which I guess you could just call it Regular Person Listening Day, I guess one thing that Regular Person Listening Day could be about is just seeing that everyone does what they do for a reason, and if someone in your life is doing things that you don't understand, like making noises, or getting very upset when you don't think they should be upset, or not being able to wear their clothes because their clothes are uncomfortable for them and their sensory issues, I mean, I feel like a way of listening to them is just refusing to ascribe meaninglessness to behavior that you don't understand, um,

I think that's a kind of listening that you can do for everyone no matter what they can do in terms of talking.

Autism is a world and you're not invited

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

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

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

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

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

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

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

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

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

just found this thing I wrote a long time ago

And while we're on the subject, the whole "speak to me, don't speak to the person with me, look me in the eye, don't use simple English, treat me like everyone else" thing, said by people with physical disabilities when giving instructions on how to treat all people with physical disabilities, PROVES that people with disabilities are not automatically good at understanding how everyone wants to be treated! Someone who makes intense eye contact with me and talks in a "smart" way etc. and expects me to respond quickly, and isn't willing to accept that someone else might be doing some of the talking for me, is not treating me the way I want to be treated and is not respecting me, even though they might think they're respecting me by "treating me like everyone else." A fair amount of physically disabled people have multiple disabilities and may have trouble being "treated like everyone else" just as much as or even more than I do.

About Kenny

I want to tell you about Kenny. He went to my high school, which I might somewhat flamboyantly refer to as undercover special ed--but it would be more accurate to say that it was a nominal prep school that was not at all difficult to get into, with very small classes, where no one would stop you from lying down on the floor. If you had a kid who, like me or my fake friend Joan, or like Dana or Connor, was obviously not going to cut it in an ordinary school, and if you had a certain amount of money, my school offered an option besides a school specifically for kids with disabilities/mental illnesses/a history of trouble. But there were kids who didn't have any of those things, and just hadn't been able to get into a better prep school. I feel a strange loyalty to the place, although I was incredibly lonely for my last two years due to being a sexual minority who couldn't compensate. It was probably the only school where a person like me could have had close relationships with teachers, learned to succeed academically, and been involved in theater and music; so I'm grateful for that.

During my tenth-grade year they built a new arts building and from then until I graduated that's where I spent most of my time. The whole building was carpeted and there were different hallways where I liked to sit on the floor, against the wall, and write in a notebook or read. I liked the halls in the basement, near the practice rooms, or near the room where my Latin classes were. I also liked the ground floor--I liked to wedge myself in next to the radiator, or maybe on top of the radiator, I forget, but so I could see out the window. There was an anemic field between the arts building and the main high school building, which had been built when my school had less money, and was uglier.

The Dean of Students moved to the arts building and she would let some of us hang out in her office; in twelfth grade I started spending a lot of time sleeping and doing work on her couch. That is also the year that a certain group of ninth- and tenth-grade boys, who kept their guitars in her office, would sit out by the radiator where I had spent most of my time the year before. They would play songs by Pink Floyd, the Beatles, and the Who. Kenny was one of the better guitarists and he had a haunting, pale voice, that sounded like a girl's when I was asleep.

I only spoke to Kenny a few times but he is one of the reasons I became interested in meeting other people with ASD--although he didn't say he had it, he only didn't deny. I was asking him a lot of questions one day while he played "I Can See for Miles" in the Dean's office by himself:

"Hey, do you have anything wrong with you?"

"No."

"I mean, I was wondering if you had Asperger's"

"Oh yeah, well, that."

Kenny had words he liked to use, and his face was always scrunched up in a way that looked like he was in pain. One reason I enjoyed talking to him was that I would start out just seeing the way his face looked on the surface, and thinking that he must be scared, or concentrating, or something; but then I could almost see through the surface of his face, and see that he had all kinds of feelings like everyone else. And then also, of course, the more Kenny played, the more his hands scrambled along the fretboard, the more his face loosened up.

Kenny was a nice kid but what I have to say isn't really about Kenny; it's about Mrs. C., the chorus teacher, and it's about the other boys who played guitar. Kenny was just himself. The words he used were the words that the boys who played guitar would say with him, in between songs. It's about all the kids who were in chorus, because--well, I have to explain about Kenny's stimming. Kenny played a lot of instruments, although I'm pretty sure he stimmed more instruments than he played. What I mean is that while Kenny flapped and stuff, the major things he did with his hands when they were not on a real-life guitar or piano were to manically play imaginary guitars, pianos, basses, violas, and saxophones. The saxophone was the one that got the most positive response, when Kenny got so explosive in chorus one day that no other instrument was good enough and he raised his hands to his face and pressed with stunning accuracy the invisible keys, and blew. The kids in chorus came close to applauding, while Mrs. C. laughed delightedly.

Before you ask, I know what it is like when people are laughing at the way someone moves. That is not what this was. Kenny's words, his stim-instruments, and his more standard flapping and jumping were considered interesting, impressive, and cool. They were not "meaningless repetitive behaviors"--everyone could see what they were about. Backstage before a performance, Kenny flapped at the people around him and we indicated we were nervous, and excitable, too.

Not everyone gets what Kenny got--I didn't get what Kenny got, and I had the same disability at the same school--but I still like thinking about him and explaining it to myself. I think this is pretty much a beacon of how things can be, proof that a person who's different can be seamlessly integrated into the whole without smashing himself into a normal shape, and without anyone else thinking they're doing him a favor. No one was doing Kenny a favor; Kenny was awesome.

One time Kenny did Mrs. C. a favor. He and a few of the other boys were going to sing a special song in the spring concert--I think it was "My Girl," something with very close harmony. It was a small school, meaning teachers did what they could with the talent they had, and I'm guessing Kenny with his incredible precision was going to be the rock who stayed in place when other boys muddled up and down. Kenny's singing was accompanied always by, at the very least, very stiff, sharp, tall conducting movements, his hands pinched together like beaks. At the very least. On the day of the last rehearsal, Mrs. C. said, "Kenny--for the actual concert, can you tone it down? Can you keep it in?" Kenny agreed. Whenever someone tries to explain to me that people make fun of kids who stim in public, as a way of proving that such and such ableist and abusive policy is okay...I just want to show those people Mrs. C.

Mrs. C. liked Kenny's stimming.

She knew that he had to do it.

She didn't think he did it to be annoying or to make people laugh or to get attention. At the same time, if people did laugh or pay attention, she didn't think that was inappropriate; Kenny's stimming wasn't an embarrassment, it was cool.

Mrs. C. knew that some parents would be distracted by Kenny's stimming and that it wasn't part of what was considered to be appropriate behavior for a concert. So she asked Kenny not to do it--in a way that made it obvious he was doing something difficult as a favor to everyone else, not in a way that implied this was a reasonable thing to expect from him all the time.

Kenny worked hard; he sang well and stayed still for the whole set of songs and then he and his friends dashed to their seats, coming down from the risers; Kenny was grinning at his friends, rolling his eyes to show how exhausted he was, wringing the hell out of his hands.

Our shrinking island

I

Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.

Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?

I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.

I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.

II

Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.

I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."

Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.

(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)

III

I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.

I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.

This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.

I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.

Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.

The harder fallacy 2: the uncomfortable fallacy

So I was talking to my friend who wants to apply for Teach for America, which if you didn't know is one of those things that absolutely everyone in college thinks about and wants to do all the time (even I find myself wanting to do it--frequently I have to remind myself that I've rarely been at all interested in being a teacher, I just want to say I'm doing Teach for America). Because everyone wants to do Teach for America, it's really hard to get picked, and I suggested that my friend should apply to teach special ed because they really need people to do that.

But I knew she would say no. People always say no when you suggest that kind of thing. "The girl I know who applied to teach special ed has a lot of experience with that," said my friend, "and I don't."

I know I push a little hard but I said, "They're just kids."

"I'm not really good at that stuff," said my friend.

"But I've seen you with people with disabilities and you were fine."

"I was trying really hard. I was really uncomfortable."

Okay.

I'm hesitant to start my post with this conversation, because it makes it sound like I go around trying to force people to be special ed teachers all the time. I don't care if any particular person isn't going to be a special ed teacher, but I just have these exchanges with people that I think are sort of strange. I don't really get it because a lot of the time it's easier to get a job if you're willing to work with people with disabilities, but people have this attitude of, "I could never do that," or, "I'm not kind of person who can do that." Do you know what I mean?

Do what exactly? What kind of person?

The time I was referring to, my friend was encouraged by three of her friends to come and spend time with people with ID who the rest of us knew pretty well. I thought she acted normal and seemed to get along well with the people with ID. Given she doesn't really have experience with ID people at all as far as I know, it seems like that's a good outcome for her first try--kind of uncomfortable, tries really hard, does fine. That's what my first experience with ID people was like.

Also, as you might remember, I used to get really nervous about this kid in my building who is blind because I was like "how do you treat a person who's blind? What if I do something wrong?" Then we actually had some interactions, and now he's just another person. Until I was nine, I went to a school with almost no people of color, so whenever I did encounter people of color, I was always afraid of doing something racist. Then I changed to a school where there were a lot more people of color, and soon they were just other kids who I liked or didn't like.

I think I just sounded like I was doing some "I don't see color, I don't see disability" bullshit, which is not at all what I intended to say. After this change in you takes place, it's not like you don't know that people are different--it's just that you're familiar with the difference, so it's not scary. Depending on what it is, it might still be important. For example if someone is nonverbal and you're verbal, that's obviously going to make your interactions different from the interactions between two verbal people. But once you're familiar with people being nonverbal, communicating with a nonverbal person is at worst a challenge. It's not like "OH MY GOSH HE'S NONVERBAL."

A while ago I made a post called The harder fallacy which was about the idea that it's okay to talk about disabled kids in an insulting way because "it's harder to raise a kid who is disabled." This post could be called the harder fallacy #2, or maybe the uncomfortable fallacy. Basically, I think it's normal--or at least normal in our fucked-up society--to feel uncomfortable when you meet people from a group you haven't had much exposure to. But I think this reflects on you and not on the group. But I think that some people develop this idea (probably as a result of the harder fallacy or something similar) that there actually is something especially difficult and complicated about spending time with people who have certain kinds of disabilities. They think that people who don't find it difficult are somehow special or have special powers or are incredibly kind. I think this is insulting.

Again, I'm not trying to say that my friend should be a special ed teacher. Just getting not-uncomfortable with a certain minority group doesn't mean that you have to want to be around people from that group all the time. But I think it does lead you to feel neutral about people from that group instead of building them up as some sort of special skill that you have to have a gift for or a ton of practice with.

It's weird because if I suggest something disability-related to someone who's having trouble finding a job, I feel kind of shifty, like I'm forcing my beliefs or preferences on them. Whereas if I was like, "Hey, you should try to get a job at the stationery store," and the person was like, "Oh, I don't know, I don't think I'm the kind of person who can work at a stationery store," and then I was like, "What do you mean, you've worked at stores before," and the person was just like, "But oh man, stationery, it's just a big challenge," I'd be like, "...well if you feel that way maybe you should spend some more time with stationery."

Recommended Reading Number One

First, the geek stuff:

Five Geek Social Fallacies. I guess this is a really old and classic thing but I just encountered it for the first time. I actually don't socialize in groups very much but I do think it's interesting to think about how socialization is different among people who didn't socialize when they were younger.

Better Late Than Never? The Office by Zack Handlen at the Onion AV Club. This is interesting because I've had a problem since I was a little kid with fiction where characters are about to get caught doing something wrong--like, I'd have to leave the room during movies and stuff. I find it really hard to watch/read things where characters cheat, lie, or impersonate other people because I get anxious about the idea that they're going to get caught.

Then, this wonderful post at FWD/Forward by Anna: Jenny McCarthy & Autism Part 2: Let's All Be Normal (Acting). The post isn't actually about Jenny McCarthy or even really specifically about autism, but is about the pressure that non-disabled parents of disabled kids put on their kids to act less disabled.

Today the FWD/Forward Recommended Reading included this post, AngryBlackBitch: On Autism Awareness, by a woman who is a guardian of her ASD brother. There are some problematic aspects as Kowalski pointed out in her comment on the FWD/Forward post, but overall I think it's really nice. That post reminded me of a post I found that's a few years old and was written in response to the Ashley Treatment, by someone whose sister is severely intellectually disabled: Fit of Pique: Growing Up with Sky.

Also Dave Hingsburger has continued to post awesome videos with transcripts: Change Begins, about witnessing abuse in an institution and being pressured to keep quiet about it; and Sean--An Evening Out, about treating a teenager with severe CP like a person. His Easter post is also beautiful.

I hope this post isn't annoying or anything. I don't know if I will make another like it--I mean, I probably will, but I don't know when. I just find things I like and I get excited and want to make sure everyone else gets a chance to like them too.

Quote of the day:
"Facebook is a lot of fun. I always pretended not to like Facebook when I thought I was too cool for school, but now I really like it. All these girls comment on things I do, which is not all like real life."--John

affectionate disability issues

The Joe and Amanda Adventure wasn't one, because Joe wasn't as smiley as last week, and the teachers said that all the kids were in a bad mood because it was the day after their field trip. Something else interesting happened, though. After circle time, the teacher dimmed the lights (which for some reason resulted in Joe yelling) and put on some quiet music and had the ambulatory kids sit on beanbags, and picked up Joe and put him on a beanbag. She laughed and said, "It's really more for my benefit than theirs."

There is a kid in the class named Zach who frequently cries and seems angry. I don't know what his disability is but it's the kind of thing where if I was more educated I'd probably be able to tell. He's very small, uses a wheelchair, and has a really small, short face and small eyes. I like Zach because he's always trying to take off his shoe so he can stim by waving his sock in front of his face. Today I think he seemed interested in my presence when I showed up in the middle of their gym class, he was kind of looking at me and clapping and stuff.

But yeah, he was making a lot of noise after the teacher had dimmed the lights, and she picked him up out of his wheelchair and put him on the floor. I couldn't tell if she did this as a punishment, or just because she thought it was more appropriate for what was supposed to be a relaxing time. I feel like if she was trying to relax him she would have put him on a beanbag. I just thought it was sort of weird.

Zach crawled over to me where I was sitting in a chair. He took hold of my arms and with my help lifted himself into a standing position. Then he sort of turned so I was holding him in my lap. I sort of hugged him, but I felt weird about it because he's fourteen. When I first met him I thought he was seven or eight at the oldest, and I wouldn't have reacted that way, but I just wasn't sure if it had different connotations given how old he is, so I sort of made him sit back down on the floor.

Then he crawled over to the other side of the room where his teacher had put his wheelchair, and I got up and went with him. Zach was sitting next to the wheelchair and touching it. He reached out to me and looked at the wheelchair. I felt really bad because it seemed like he wasn't comfortable not being in the wheelchair and was hoping that I would help him (I may be totally projecting, but I don't know why else he would crawl away to the corner of the room if not to be near his wheelchair). I quietly talked to him and told him that he couldn't go in his wheelchair yet but would probably get to be in it again after the class finished listening to music. I don't remember what else I said.

Anyway, he started kind of having me pull him into a standing position, and then he basically put his arms around me, and I was sort of holding him (I was kneeling, I think), and he had his face pretty close to mine and I think might have been trying to kiss me--I got a bit of an impression of that, at least, so I kept turning my head away.

Now that I write this out, it sounds a lot weirder than I thought it was at the time. I mean, from a little kid I wouldn't think it was weird. I also know some intellectually disabled people who are very physically affectionate with people they don't know well, and it doesn't bother me at all, I think it's awesome. But because I'm confused about what the nature of Zach's disability is, I didn't know how to react, whether to classify him as the kind of person from whom such a display would be cute.

I'm thinking about this more and thinking about what hugging and kissing means, and what it means to define someone as the kind of person from whom hugging and kissing is cute, and the kind of person from whom it's inappropriate. I'm not sure it even makes sense for me to act as if there are people who are always allowed to do it and people who always aren't. I met an intellectually disabled guy who, when meeting women who were wearing low-cut shirts, would take both their hands and shake them up and down, staring at their breasts--his way of greeting people obviously wasn't "cute," and he was rather creepily taking advantage of the fact that people were going to perceive physical contact from him as "cute" rather than as sexual. Another intellectually disabled person actually had to explain to my friend why she shouldn't let Adam shake her hand. On the other hand, I know a woman named Andrea who likes to hug and kiss people, especially people she's seen before, and it doesn't strike me as creepy. But it's theoretically possible that Andrea is doing this for sexual reasons, whether or not she's aware of it. But I just assume she's not. I'm not saying Andrea doesn't have a sex drive, but just that this particular action of hers isn't necessarily sexual, and it doesn't seem obviously sexual to me.

If a fourteen-year-old boy who didn't have a disability started hugging me and climbing up on me, I would absolutely not be okay with it. But let's say, even, that Zach has absolutely no intellectual disability at all, but just can't communicate--well, that still means he's had a hugely different life from the average boy his age. And the reason I'd be upset by the average boy his age doing that is not because I think every single thing a fourteen-year-old boy does is sexual, but because the average fourteen-year-old boy will be trained to think of that as sexual and inappropriate behavior, so if he's doing that, it's almost an act of violence and it's definitely disrespectful. I don't know if, out of that context, it is inappropriate.

And besides, my example of Adam shows that an intellectually disabled person can be creepy as fuck, so then can't the opposite also be true? Why does Zach have to be intellectually disabled for this to be okay?

I know it seems like I'm weirdly invested in arguing that it's okay for Zach to hug me. I think it's because platonic physical affection is a major part of my life and my identity. I used to call myself "heteroaffectionate," meaning I fall in love with guys (I'm not sexually attracted to guys, for those keeping track). Basically, I've had several male friends with whom I'd hold hands, spoon/sleep in the same bed, and just do sort of semi-ironic things, like kissing each other on the top of the head, being each other's Valentine, etc. And I can be really intense about these guys.

I'm not really heteroaffectionate to be honest; it's not like I actually don't have any romantic feelings for girls. That's kind of a joke. But because I don't really date, I've had to figure out that there are a lot of other ways of being close to people and caring about them, and I really don't like the idea that you can only be close to someone you're in a sexual relationship with (which is an impression I get from some straight girls I know). It's really weird for me in the early stages of friendships, sometimes, because I might not know if the guy knows I'm gay, or even if he does, I'm afraid that when I do things that are seen as too romantic, he might not know what to make of it. So I guess this is why I sort of jumped on my reaction of "oh shit, I don't know if Zach should be hugging me"--because I know from experience that lots and lots of kinds of affection are not about sex.

I mean, yeah, he may be a creeper (or an unconscious creeper, who doesn't get that he's being creepy, but is nonetheless hugging me for a sexual reason). But he also might not even like girls, or like anyone. Or maybe I'm not the kind of girl he's attracted to. There are all kinds of nonsexual reasons for Zach to try to get me to hold him--sensory needs, platonic affection, a desire to feel more high up and secure like he does in his wheelchair.

This may be an unpopular opinion, but I sometimes feel that assuming disabled people are always being sexual doesn't make any more sense than assuming that we never are.

P.S. I got to see Shawna, who is a little girl with autism and mental illness who I met two years ago, who was one of the first DD people I ever met. Well, she's not so little anymore, she's eleven, and she's really tall. She was just standing around near the gates of the gym so I went up and talked to her and put out my hand, and she held my hand and reached out and touched my collar, which I recall she does a lot. She was saying something she maybe used to say, that sounds like "walking, walking, walking" or maybe "wanting, wanting, wanting"--but after a minute one of her teachers told her to come away from the gates.

Is Kevin Girardi a jerk?

I slept really badly last night and for some reason I started thinking about Joan of Arcadia, which is a sort of sappy TV show that I loved way too much last year. Anna at FWD/Forward has made several posts about the show's treatment of disability, which is really good.

To sum up: Joan's brother Kevin was a really conventionally masculine, popular teenager who was going to get a basketball scholarship, but was in a car accident in his senior year of high school and became paraplegic. The show starts a year or two after that and Kevin has been depressed for a while, but during the course of the show he gets a job at the local newspaper, discovers he's a talented writer, starts dating again, etc. He's sad that his old plans for his life aren't feasible anymore, but it's obvious there are still a lot of things he can accomplish and get excited about.

Yeah, so anyway, there's one scene in the first season where Kevin is dating a girl he works with at the newspaper. They're lying on the floor making out, and he says, "wait," and flips them over so he's on top, and they continue kissing.

Someone--I think the Television Without Pity recapper for the show--reacted to this scene by thinking that this was a creepy and sexist thing for Kevin to do. When I read this I was surprised, because my reaction to the scene was "Go Kevin." I thought that if Kevin really liked being on top before his accident, he shouldn't just acquiesce to not being on top because that's the expected/more convenient position for someone who's paraplegic.

This reminded me of a comment I read on the Internet Movie Database board for the documentary Murderball. IIRC (I have to go really soon, and shouldn't even be posting right now), the comment said that viewers of the movie are willing to cut the subjects a lot of slack for their sexist and generally unpleasant behavior, because they're wheelchair users, and it seems cool to see them acting like any other guys.

So, I don't know. I shouldn't have started this post because I don't have time to finish it. People with disabilities should be able to be individuals and shouldn't be held to a higher standard than non-disabled people and be expected to be saints. Guys with disabilities shouldn't be expected to be extra sensitive and feminist. On the other hand--that's not really true, all guys should be expected to be feminist.

I don't think it's ever jerky for someone to want to be on top, in real life. But given how Kevin is portrayed on the show in general as someone who is mourning the loss of a ton of stereotypically-masculine-guy privilege, I don't know if that scene was supposed to be about him being sexist, or about him being himself. I mean, if people are sexist, then I guess we shouldn't want them to be themselves.

I cut my hair and it looks PHENOMENAL

(it's in a ponytail, I didn't cut off the back)

I mean, it's not super brilliant and accurate, but I'm really glad I started cutting it. I don't always do it myself but I have been doing it myself most of the time for about a year, and this means not having to wait for things, or rely on other people, or sit still, or put my head next to something loud. And all those things amount to HEAVEN.

Anyway, this summer I had a blog that I was using to keep track of what I ate, but because it was a new blog I got overexcited and would post these really detailed and thought-out posts about music and ASD. I've had a livejournal since I was 14, but I tend to post whatever comes to mind and not really work hard on it. So my blog this summer ended up being kind of the beginning of this blog. And I found this post that I think is good:

I kind of hope I marry another person with ASD. In my very very brief relationship experience I've always felt like a curiosity at best. It's been like I'm this CUTE THING. Which is sort of how I get along in life, because I don't process information very fast etc., so a person has to think I'm cute or they get frustrated with me. It does serve me well, but it also makes me angry if a person and I actually become good friends, or something else, and that's still what they think of me. I'll just come out and say it: I think I'm really smart--in terms of the way my brain actually moves, not necessarily in a way that other people can see on a regular basis. And although I'm not a good musician technically, I think I'm good at the kind of music I do.

So here are things that don't work: people not thinking my music is good--like, it's fine if they don't like it for a good reason (RL told me in detail why he didn't like it, and I really enjoyed that), but I feel like people just IGNORE the fact that I'm a good writer and singer and have good melodies, because it's childlike. And, people not thinking I'm smart. People being really fucking surprised that I know what things are.

Also, people thinking that I can't handle myself and they need to like comfort me or make decisions for me. I consider myself a moral person and all but that doesn't mean I like all that lesbian shit, like epic amounts of cuddling and holding hands and no snark. OR GETTING ENCOURAGED TO ACT MORE CONFIDENT. I process stuff really slowly. I pick up on things really badly. It's a legit thing about how my brain works and my anxious affect is a)perfectly justified, and b)a pretty good defense mechanism so people know what to expect.

Or people acting really shocked and horrified when I get angry. I mean, I think my anger is possibly more disturbing than other people's anger because it's so straightforward; that makes sense. Even when I intensely express my opinions about something, some people have a really negative reaction because I guess I look so serious, even though I'm usually happy when I'm talking about something like that. Plus, I'm sure it's even worse after all the CUTE--it probably feels like a betrayal or something, this CUTE THING suddenly speaking loudly and not smiling and demanding to be listened to. So. Fucking. Boring.

The way it is is that I'm really all those things. A lot of ASD people are. There's the childlike stuff, the jumping around and spaciness and innocence, which I wouldn't want someone to try to coach me out of, and it's cool if you DO think that's cute, but then there's also the "bad"/guy-ish stuff, the devoting myself to projects for four or five hours without a break, the getting overwhelmed and not liking surprises, the very harsh-looking reaction when I hear or see something that I think is wrong. Anyway, I want to be with a person who likes/understands all that stuff. And I want to do the same for her.

Two kinds

Do you agree that there are two kinds of disabled people--people who are visibly disabled, and as a result tend have people overestimate their disability, so that they really desperately want people to be less likely to express sympathy for them and offer to do things for them; and people who are invisibly disabled, and have people constantly tell them to apply themselves and tough it out, and therefore really really enjoy it when someone tries to help them, even clumsily?

I find this idea impossible not to think about, just because of the symmetry. This is probably Like a Person Part Four I guess, but whatever. And also, disclaimer, there aren't really only two kinds, it's just that I am talking about two groups of disabled people, but there are other disabled people who aren't in either group, I'm sure.

I feel like--and not to be a dick, my parents are really nice and everything, but anyway--my parents have always made me be both kinds of people at once, meaning that they'd do lots of things for me that I had trouble doing, but they'd never stop reminding me that I should be doing those things, and it was really bad that I wasn't doing them. They did things like making a point of having me go and order food at McDonald's when I was a kid, because they knew that it was hard for me. So even when I was actually doing the things, I didn't feel normal, because it was A Lesson. I'm probably not being coherent. I don't have much time to write this.

Pretty much my only disabled friend (I have some friends who have mental illnesses but don't identify as disabled) is physically disabled, and he is super spoiled just like I am, rarely has a job, executive function skills are possibly worse than mine are, just learned to drive at age 21, last year his roommate would sometimes come up to me and say, "Can you please get FFD to put a sheet on his bed because he's sleeping on a mattress and it's grossing me out?" At the end of first year, his mom told him not to pack or clean his room, he'd worked hard enough, she would do it.

My parents got to school at the end of first year, and I wasn't done packing--I had taken all the paper off my walls, which you can imagine took a long time, and packed some clothes, but my room was very cluttered, when they came in. So my mom had a very negative reaction about how I was disorganized and hadn't done anything.

I'm kind of rambling and maybe shouldn't be posting this because it might be a gender thing instead of a visible/invisible disability thing, or just something completely different. I do think it's interesting, though.

Anyway, when my friend was in school, he was mostly in mainstream school, but at camp, and as a little kid, he was with kids who had severe intellectual and physical disabilities. He has this thing about how teachers would always tie his shoes for him instead of letting him do it, because it took him longer. Also when he was a kid he sometimes fell down and some bystander would make a production out of it even though he was obviously all right.

My teachers basically thought I was a major bitch and in fifth grade my teacher took me on as a project and forced eye contact on me while telling me how self-centered and arrogant I was until I started crying. She would also take books away from me to train me to talk to other kids, etc. etc. and basically snap at me if I said something she considered impossible, like, "I can't tell if I'm joking with someone or bullying them."

So, if a friend and I go to a movie theater or something like that, and my friend automatically does the talking for me, or if a friend brings me along to her boyfriend's house where there are a lot of people, and talks to her boyfriend in an attempt to find out if I could go play with his guitar, this is something that I find hugely touching and wonderful. Whereas, if I get up to plug in FFD's computer, or bring him his shoes or something, it makes him annoyed.

(I should give myself more time to write things, sorry; am I saying anything interesting?)

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.

Like a person, part two

Recently I watched Autism is a World. It was good. I obviously don't agree with Sue Rubin's politics, but she's an admirable person, and I do agree with some of her characterizations of autism (these are things she's said in her writing online, not necessarily in the movie). To some extent--for me at some points, and obviously for her--it is something you can get lost in, and that is not really a good thing, even if it's politically incorrect to say so.

But anyway, I wanted to talk about this one thing that occurs in the movie. It doesn't occur only once, but I thought the best example of it was when Sue was stressed out about her aide's impending departure, and she yelled at her aide when they were sitting together. The aide (Aisling, I think?) correctly interpreted this as Sue wanting her to leave, and she told Sue that if Sue wanted her to leave, she should get out her communication device and say so, "instead of yelling at me." Eventually Sue did communicate that using her device, and Aisling said something like, "Okay, I'm going to leave now, because you asked me with words instead of yelling."

You might ask what is wrong with this, and it's true, when you're just presented with this kind of interaction--one person being rude to another, and the other person saying, "no, I'm not going to do what you say unless you talk to me respectfully"--it seems like there's nothing wrong with it. People shouldn't yell at each other; they should be polite.

But, okay. I already wrote a post called "like a person," but even before I wrote that post I had an idea for another post, also called "like a person," forming in my head. And Aisling provided an example of exactly what I'm thinking about. In this post, "like a person" isn't an alternative to "like an ASD person" and "like a normal person;" it's an alternative to "like an adult," which is often a euphemism for "like a child."

The way I started thinking about this is with another example that I hesitate to use because it's not exactly a big deal, but it really annoyed me at the time. When I was learning to drive, I would get into little fights with my parents because I'm not good at remembering a lot of directions, and every time I got to a fork in the road or a new road coming off the main one, I would ask which way to go. Sometimes my parents wouldn't want to tell me. When they did tell me, we would sometimes have a power struggle because they said "straight" instead of "right" or "left." This would be if, for example, the road curved slightly to the left and another possible turn appeared on the right. I wanted to be told right or left because that was a little easier to process than "straight," because it took me a second to figure out which road was considered to be the same road we were on, and which road was considered to be a turn--"left" or "right". Obviously, it only took me a little longer, but I thought that my parents should respect my preferences about being told "left" instead of "straight," so when they said "straight," if we were alone on the road, I would stop the car and wait for them to say "left." If it was my dad, he usually won, and if it was my mom, I usually won.

Anyway, "like a person, part two" was going to be me arguing that, while my parents would probably say they were treating me like an adult when they refused to say "left" or "right," and likewise when they refuse to do some kind of unimportant social interaction that seems very overwhelming to me at the time, they are not really treating me like an adult, because that's not how you would treat another adult. If another adult expressed preferences, you would probably go along with their preferences, not force them to do something they would rather not do because you're trying to teach them a lesson.

But I know this is kind of a dweeby example, and also, pretty much everyone treats their kids like this, even (if not especially) when they claim to be treating them like adults. I think the Sue and Aisling example is a lot more striking because Sue and Aisling are the same age. I mean, let's think about how you would expect this interaction to go if Sue was not a disabled person.

If I was a 26-year-old woman, sitting with another woman the same age as me, who considered me a good friend but was having some conflicted feelings towards me, and she got upset and yelled at me and indicated she wanted me to leave, I would probably do one of two things:

1. Leave.
2. Be hurt and try to convince her, based on the fact that I knew she cared about me, that she didn't really want me to leave. This scenario might end with me eventually giving up and leaving, of course.

There is just no way that I would treat a situation like this as an opportunity to train my friend to be more polite to me. And I know Aisling sort of works for Sue, so maybe it's not exactly the same thing, but still--Aisling's job is to help Sue communicate with other people, not train Sue like she's a dog. They are the same age. Sue is just as smart as Aisling if not more so. She is understandably upset. Aisling would probably say that it would be spoiling Sue if she went along with Sue's angry, nonverbal request, and that she wants Sue to behave like an adult, but part of being an adult is that people respect your wishes and do not try to forcibly keep you from expressing anger. Most adults yell and make demands sometimes. Sue is acting like an adult, because she is one. Aisling should have treated Sue like an adult, just like she would if Sue did not have autism.