29 September, 2010

the calmness checklist of a lot of people at my school

I don't want to call this "non-ASD privilege" or anything. There's already a checklist sort of like that. But I have been thinking and observing my particular situation, which is to say: grew up being stigmatized as disabled in my family, have always kind of known there is shit wrong that I have to manage (although I haven't thought about it as concretely as I do now), but have pretty much done the things that other kids with a lot of class privilege do when they are growing up. I haven't gone to a segregated school, I currently attend college, I don't see any reason to think that I will ever be in any kind of (good or bad) supported employment as people with more severe DD may be. And I don't think I will ever be in any danger of being forced to live in an institution, no matter what.

A little more than a year ago I made a YouTube video where I compared myself to a wheelchair user who when asked to describe her daily journey describes a series of places that any non-disabled person might go to. That is--the places she could go might be highly limited by which spaces are wheelchair accessible. A person can move through a bunch of places and situations that seem "normal" and are not identified as being for disabled people, but actually the person might be disabled and be quite affected in the number of options she has.

Although I think I have a ton of privilege just because I haven't always felt this trapped, I feel really trapped now (senior year). And I am surrounded by people who don't have disabilities and don't feel the same intense need to start planning their futures now for the sake of being safe. But on the surface we don't look all that different.

In fact I like my college partly because it is a very stoner/experimental/hipster/hippie/radical environment. I don't identify as any of those things, but the social environment is very comfortable for me because there's so much diversity of acceptable behavior. But this very social environment is something that really pisses me off right now. I mean, a lot of the people at my school who behave "unacceptably" do so because they think it's an interesting thing to do. They can quit any time and they don't have to structure their lives around it. Similarly, when they don't do things they are supposed to do, this is called relaxing and not worrying too much and giving themselves time. There are some things that I just can't do.

In my class where we work with kids and teenagers with DDs, we had some discussion about what a developmental delay is, and then what executive dysfunction/poor central coherence look like in people with ASD. This often degenerates into a good-humored discussion about how many people enter college and don't even know how to do their laundry, and how a bunch of guys still rely on their girlfriends to schedule everything for them, and how many friends of the person speaking don't even understand how to cook a meal. As a person who is really worried about the prospect of cooking meals and scheduling things for myself and completely wearing myself down to the bone because of how much emotional effort it takes, I don't think this is funny. And this article makes me spitting mad.

So, without further ado:

(this is very personal and kind of mean, and probably would not hold up in court)

1. I can ask for an extension without having to feel like a failure.
2. If I don't graduate on time, that's cool.
3. I can talk in class without feeling guilty for taking up people's time with my bad talking. I can even get off topic or say things that are totally stupid.
4. I can schedule meetings with my professors when I think I might be doing badly in class, because I don't worry that they will think I'm lazy or don't care about the class because of how I come off. I don't only schedule meetings in the event of being in danger of failing the class.
5. I can schedule meetings with professors just because I like them and want to become friendly with them, because I think that they'll like me too.

6. If someone expresses romantic interest in me, I don't worry how they will find out or if I should tell them.
7. If someone expresses romantic interest in me, I don't just end up avoiding them altogether because I don't want to deal with figuring out #6.
8. If someone expresses romantic interest in me, I can be pretty sure that it's not because they are academically interested in my lack of autism.

9. I'm never sitting in a class where everyone is ASD except me and someone says, "I'm really interested in not-Autistic-ness, it's so fascinating."
10. If I tell someone I'm not Autistic, they never immediately recommend that I read a book about a character who isn't Autistic written by an author who is Autistic.
11. I never have to try to figure out how to give feedback in a writing workshop to someone's story about how depressing, confusing, and annoying their sibling is because their sibling doesn't have autism.
12. Actually, I just never have to ever sit in any class where students or professors say anything about how much sympathy family members deserve for living with someone who doesn't have a disability.
13. But if someone ever did say something insulting or dehumanizing about people without disabilities, I could just say I was offended and explain why. I wouldn't have to feel like people would think I was overreacting. And I definitely wouldn't have to feel like people might be thinking, "Wow, I guess people without autism have trouble understanding other people's points of view." Or, "I guess people without autism don't understand humor." Or, "I guess people without autism have to take over the conversation and make it all about their own interests just because someone made a little comment about something related."

14. I can intentionally vomit on the steps of the library, and that's just how I am, not a sign of how I don't understand social norms.
15. I can also wear pants with holes in them and no underwear so people can see my junk (same person). Again, this isn't because I don't understand the appropriate way to dress, it's just a personal choice.
16. I can never shower and it's not because I have problems with personal care. I just don't feel like it.
17. Being out of it or overfocusing on weird things or dissociating is so fun that I actually pay people for substances that can make me do those things.
18. When I'm in a less accepting environment I can start showering and stop throwing up on the library and showing my junk to everyone and smoking so much weed, and get a regular job.

19. I don't have to worry when I am in class and the professor is sitting across from me and I'm afraid he will be making eye contact and expecting me to say something and I won't react fast enough or I won't make the right expressions.

20. When I'm at home I don't do my laundry and I don't feel bad about it. My mom doesn't tell me that I need to practice doing laundry or I won't be able to live on my own. I don't feel bad that my parents make my doctors' appointments because I'm still young and I don't have to prove that I am normal and independent.
21. When I mess up tasks like cooking, packing for trips, and cleaning my room, or get them done late, my mom doesn't tell me that I might never be able to live on my own successfully because of this.
22. My parents don't make me balance a checkbook when no one else does because I need to learn to be organized and responsible.
23. My mom doesn't cry about me when I am not feeling good. My mom doesn't cry and make me feel guilty about how she was upset by bad things that happened to me in the past. If I am feeling upset, I can just tell my parents without feeling guilty.
24. As a young teenager, I didn't wish I had a sibling so my parents could have a kid who would actually do things besides make them upset.

25. When I am interacting with service people, for example when I am eating at the dining hall, I don't worry about whether I am inconveniencing them. I don't pay much attention to what they expect from me (for example if they have a policy of checking inside take-out boxes, I will always wait to be asked by the cashier; I will never open my take-out box knowing it will be quicker to do that; and I will often bury my meal card deep in my pocket and stand there rooting in my pocket as the cashier waits and a line of people grows behind me). [a/n: yes I am the cashier in question :)] I don't worry about whether other people can understand my speech. After all, if other people can't understand what I'm saying, or are offended or inconvenienced by my behavior, it doesn't really reflect on me that much. I'm observant because I believe I am and I have good social skills because I believe I do and people should understand what I'm saying because I believe they can.

25. I might just move to any city I want if I feel like it. I am not worried about how I will get a job. Maybe my parents will send me money, that's cool. I'll figure something out.
26. It's easy to make friends. I know people will like me so I just talk to anyone. I just ramble to people about whatever I'm interested in.
27. I haven't had a paid job in a while. Wait, should I be worried about that? I'm really busy with schoolwork and friends and performance art. Of course I can get a job when I want one.
28. No matter how old I was the first time I got a paid job, I didn't feel ashamed that it had taken me so long to do what I believed a teenager was supposed to accomplish.
29. I can take time off from school if I want. I can go to grad school for fun.
30. Whatever I'm doing, I am okay.

Having written this, I've removed the word privilege. It's very scary for me to have to think about how hard it sometimes is for me to take care of myself and how much I have to plan for the future (always living with a friend, probably; I don't think living alone is safe for me). And it makes me angry how much I feel trained to think of myself as a burden.

However, I was talking to a friend my age who also is disabled and is class/financially privileged. And we ended up thinking it was maybe kind of good that we felt way too self-conscious about being disabled to just noodle around and not worry and be failures to launch. (On the other hand, watch all those people eventually launch and be way more successful than me because they're so confident in the knowledge that they're normal and people like them. Well, we'll see. I have a little time yet.)

26 September, 2010

some stuff on the horizon (like you're totally all excited about this, maybe not huh)

gay kids are trying to be productive academically, sometimes that doesn't happen but it's presently happening a little. so I don't want to write too much.

some thoughts though:

1. we can't all be Renaissance men
("look, stop freaking out about how disabled so and so is, he seems to be supporting himself" "but he can't tie his shoes and he could never go to a frat party!" "that's okay, he can wear slippers" "but some job environments wouldn't consider it appropriate to wear slippers!!" "but so and so's current boss and coworkers are okay with it" "WHY ARE YOU TRYING TO AVOID TALKING ABOUT HOW DISABLED SO AND SO IS, HE'S JUST SOOO DISABLED AAAAARRGHH I CAN'T EVEN")

2. does disorganized speech mean disorganized thought--too lazy to find what I'm talking about, but I was reading comments on a blog post by someone who was having trouble getting her kid diagnosed with ASD, and the professional she went to kept being like "no, she seems like she has some kind of psychosis because of the way she talks." some people like Amanda Baggs and Anne Corwin were saying in the comments that they speak in disorganized ways but that it just means language and thought are not very connected for them, their actual thoughts are not disorganized, it's just hard to turn them into words.

however, for me, language is me, there's nothing without it. Augusten Burrows's annoying brother said that he had to create his entire personality himself, and I feel the same. ADCN said that when I talk it sounds like I'm just thinking out loud, and that is the natural/easy way for me to talk, the way I was talking to him when he said that.

I am a poor speaker because I'm a poor thinker. I'd like to get a good rediagnosis/evaluation before I graduate from college, because it seems sensible to have it. but I'm actually worried that at this point I'm too careful about speaking coherently, and my speech won't be a complete window into my thought process the way it was 10-15 years ago.

3. "social skills don't exist," a super epic and great post which I have already written a lot of. this isn't the same as saying social impairment doesn't exist--social impairment can be framed in many ways and it is socially constructed of course, but it is REAL. but I just think that social skills aren't even real. it's a completely useless/empty concept.

first, what are "social skills"? making people like you? making friends? being able to manipulate people? making people not bully you? coming off the way you want to come off? those can't ALL BE THE SAME SKILL. what if you come off as intelligent/authoritative because you're tall? is being tall a social skill for that person? is being the same race as other people a social skill because it makes people more comfortable around you?

second, there is more than one person in the world. not everyone is taken in by the same things. and also, I guess I'm an idealist and tend to have a pretty gooey idea of connection and love. I believe there's potential for connection between various pairs and combinations of people--but not everyone gets the opportunity to connect. that doesn't mean anything as simple as saying that someone "lacks social skills." what a hateful thing to say, everyone has social skills, they're just not all the same things.

I also really love Stanley Greenspan/floortime, which is a way of actually consciously modifying your behavior to try to connect with people who have severe disabilities (for example, trying to speak in a way that isn't rough on their sensory issues, or trying to become involved in their stimming). If anything is an actual SKILL, this stuff is, and I think it's awesome--but it's not something that most people are naturally good at.

24 September, 2010

part two of what I mean

It would almost be like if everything only existed while you were looking at it so if something was important you had to look at it all the time. It's hard for me to concentrate on anything deeply because I'm afraid of what I might lose. I have a sense of having to force myself to do everything I do. I also have trouble working on longer-term projects that are upsetting to me (like transferring credits from study abroad) because I'm afraid that "looking" at them for too long could lead to a lot of distress, so I constantly "look" away, but when I do that, they cease to exist.

23 September, 2010

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.

22 September, 2010

When I am in class and class ends at 3:20 and started at 2:30 (and at 2:45 I thought it would never end) and at 3:15 I got hit by this wave of bliss that I made it, and it is 3:21 when someone finishes translating a line that is two very long sentences away from the end of the assigned reading, and the professor says, “Well, let’s just finish it,” and I consider yelling, “Well, fuck you” although I like my professor, or maybe just getting up and leaving class really loudly and dramatically, because I stayed for the whole class and I sat really still, well not really still but I am still alive and so is everyone else in the class, possibly someone has looked at me for shaking and possibly there is some blood on my face and my hair bizarrely feels like it has been underwater, but possibly not, anyway I did it, here I am, but it’s not fair because my schedule says I’m allowed to go but she just fucking decided that someone has to translate all these other lines even though usually we don’t finish the assigned reading if we don’t have time, and I am so, so, so spitting mad that I write down the translation (which I haven’t done) very sloppily in my notebook with the pressure of my pen and my hand sort of slumping against the page, because writing it this way it feels like a weapon and it feels like if I could kick the legs of the table or something else I can’t do

I am so, so worried I’m going wrong again.

Admittedly I got sick and lost the whole weekend so of course I haven’t gotten my bearings very well but I. Can’t. Do. This. I can’t be like this. If I am really like this for the rest of my life, I can’t do it, I won’t be this person, I refuse to feel this way.

20 September, 2010

Let me be played

I think that expectations for staff should be based in service not control. Which is to say you should try to give someone what they want not what you think they need. The obvious response to this is "but some people run out in traffic" and that's definitely true; obviously control is called for in some cases. But I feel like staff should start from a place of trying to serve people and then if the person is actually in danger, you can try to stop that specific situation. I think controlling someone should be something you decide to do in an emergency, not something you're expected to do as a regular part of your job. I think staff should be judged on whether the people they work with are satisfied and happy.

I was reading some of Roia's posts at The Mindful Music Therapist about how she felt really judged by the staff of someone she was a therapist for because her client kept taking her clothes off during therapy sessions. She felt like they thought she wasn't competent because she wasn't able to keep the person from doing that.

This is really depressing to me because I think there are a lot of motives for someone taking their clothes off that would actually reflect well on the staff person/therapist/teacher they did that with. I'm not saying it's good that someone strips, but it could mean that they feel safe, or in my experience it could mean that they want to play a trick on their staff person and see how they respond. I feel like if someone is trying to fuck with you, that's a pretty good sign of the person wanting to relate with you and learn more about you, and also to my mind can indicate that the person is confident about expressing themselves and initiating connection with other people.

So why would anyone be seen as incompetent because a person she was working with did that?

There were some times at camp when I'd be really pissed at someone and then I would realize, "I'm upset because I'm trying to stop a man twice my age from carrying his tape player with him to breakfast. What the fuck is wrong with me?"

The answer is, a lot.

Presumably in Real Life I don't get pissed at people for carrying tape players around. Actually, a person who carries a tape player around sounds like someone I would really like. And also, if I was the parent of an adult (that is, if I was an authority figure but without the policies/rules that someone like a staff person has) I can't imagine getting pissed at my son for wanting to carry around a tape player.

One reason a person might get angry would be if they think another person is angry at them or is trying to upset them. I knew that David generally liked me and we were having a conflict because he wanted to have his tape player, not because he wanted to disagree with me for the sake of disagreeing. So that doesn't explain why I was angry.

I should mention that when I say I was angry, I don't mean that I actually yelled at anyone, but just that I realized I wanted to, and then generally backed down and felt incredibly creepy and messed up. This happened probably three times, fully, but I think there were several campers who I resented on a low level even if I tried to be positive and get along with them on the surface.

I know that staff people can't always have positive feelings toward the people they work with, because some people just don't click with each other. But in retrospect, I think that I resented a lot of people not because of anything they were or did, but because I felt I would be judged for the things they couldn't or didn't do. This was a big problem with people who were slow or spacey or had a very specific way of doing things--I would be thinking, "fuck, we're going to be late for [breakfast/activity/etc.] and people [i.e. staff] are going to think I'm not competent" or "people are going to patronize me because I can't get three people showered in forty minutes"--or, with David, "people are going to think I'm a bad counselor if David is sitting there listening to his tape player instead of participating in activities."

Which is a sign that I'd gotten the impression my environment valued control above service.* When I felt like I would get in trouble or be judged if I couldn't compel my campers to do things a certain way, that caused me to take completely innocent behavior personally. Like lots of people, David often preferred listening to music to interacting with a group--but when I felt like my job entailed getting everyone to interact in a group, wanting to listen to music became something David was doing to me. When he wouldn't participate the way I was expected to be able to get him to, then I felt I looked bad, and ended up thinking things like, "Why does he have to be so selfish? Can't he think about how his behavior affects me?"

Which is really bad because it meant that totally normal and inoffensive things about David became a source of conflict, and made our relationship less positive. Although I think we had a good relationship overall, it would certainly have been better if I hadn't been stressed about how his personality traits were going to affect me. I could certainly have served him better than I did.

*I don't want to sound so critical of the place where I worked. For example, during orientation we were told, "Some campers with autism or OCD may obsess over checking things or may want to do things a certain number of times. We have all the time in the world--if it makes someone feel better, then do stuff a certain number of times." But despite this, I still ended up feeling pressured to control my campers, and I know I wasn't the only one.

I can't let that happen though. I think my goal as a staff person should be to be patronized by other staff. I want people to tell me I'm gullible and a pushover and I'm not being professional. He's not really sick. He's not really in pain. You can't just let him do what he wants all the time! You have to hurry him up. Oh, he tries to get people's attention all the time, just ignore it. Why is he all the way over there? What is he doing? She shouldn't be talking to you like that. He's playing you.

One time at the ABA school I saw a kid tracing squares on the carpet and I reached out to do the same. His teacher said, "Don't do that! You're encouraging him."

Fuck, I hope so.

my awesome dreams

So even though my entire theater started laughing when we saw M. Night Shyamalan's name in the Devil trailer (it's amazing how universal this experience is), after reading spoilers for it, I had this dream where I was cast in the movie as the devil but was too afraid to actually go in on the day they were shooting. I think that I think movies are like plays, so we actually had to just go in and stay in the elevator all day and have scary stuff happen to us and pretend to die. I was just really freaked out and didn't go. Then the director called me and asked where I was and I said I overslept and he was like, "that's okay, we can just CGI you in" and I think he just meant for the first few scenes, and I was still supposed to go in, but I just decided not to go at all.

(After I woke up I checked online to see if my unconscious mind correctly remembered the plot of the movie and it totally did, which is impressive given the stuff you usually get wrong in dreams. I'm pretty smart. Also on the "does Geoffrey Arend suck or is he awesome" debate, I'm definitely on the awesome side. If Christina Hendricks was married to some tall guy with giant muscles, it would just be sort of whatever, but instead she is married to someone who looks like us, which means that she's probably a great person and they play video games together all the time.)

I also dreamed that I was trying to find this poem "The Thought Machine," which was someone's poem about having ASD that they posted on the Asperger's livejournal community about seven years ago. In my dream, I went to this storage building that I was pretty sure the author of the poem used, and I was prepared to break into every storage space until I found the poem. But then someone showed up when I was looking around the first place I broke into, and when I explained why I was there, he said he was the person, and he'd go and get the poem for me right away. I was sort of disappointed because I was having fun breaking in to storage areas and reading people's old books.

Then when I woke up I tried to find the poem online, but I can't. I have parts of it memorized really well so I think if it was still up I would be able to find it. It's probably cheesy but I really liked it when I was younger and used to sing it to myself all the time.

eta: Adelaide is AMAZING, here it is: aspie song.

lol, look at this kid: Ergh. If you need any more proof that the way I talk is totally fake.

I also made a post that was like "I used to think autism was cool, but what about people who are severely autistic?" and got responses that were way too awesome for me to understand at the time.

I like this one: Out of curiosity. Also this: Meds and stuff. Although I think I have talked about that stuff here/on youtube.

Otherwise I wasn't a very interesting Baby Autie, although I do like the "Ergh" post.

16 September, 2010

I really like this Retard Theory post but I don't think that's an acceptable word for the poster to be using. Maybe more on this later. But I know that some trans women really don't like for transmasculine and genderqueer people to try to "reclaim" the word tranny--there's a web page in fact trying to collect evidence that the slur is mainly used against trans women and therefore doesn't belong to other trans/gender-variant people. I think this is important.

I like the word queer a lot and sometimes use it about myself. But when I was growing up, no one ever used that word as a slur, so it's funny--I feel like nowadays people who call themselves queer are not really reclaiming it, we're just using it because it's a cool word or it feels less constricting than another description. On the other hand, I fucking hate the word dyke, and I was really angry when someone I knew who had never been openly lesbian would throw the word around and use it about me. She said, "Well, I'm a dyke so I can use it." But I mean...I've actually been called that, so it's actually painful for me to hear it, and I don't see how someone can "reclaim" it when it was never used against them in the first place.

The SpeEdChange guy is implying in the comments of his "Retard Theory" post that he was labeled MR at some point and that's why he feels he can use it? Eh, I don't know. I just haven't ever heard of a person with an intellectual disability identifying that way, and I'm leery of absolutely anyone in the world who doesn't 100% for sure have that exact disability using it...I know this all seems very nitpicky, but I just am always against the idea of people saying things like "we're all the same, we all go through the same things." No, we don't.

I do think his intentions are very admirable though, and I certainly don't feel included in the terms crip or gimp (I may not be supposed to). I like the idea of saying Failure Theory, but YMMV.

13 September, 2010

I have to admit that I'm super disingenuous in the way I write about autism. Well, super is a strong word. But sometimes I feel that I tilt stuff.

Okay, so I think this is a somewhat arguable position: autism is not especially related to social impairment. Certainly people with ASD are socially impaired, but:

1. Some of this social impairment comes from being developmentally delayed in various areas, which include but definitely aren't limited to social skills (other stuff would be self-care, and so on). Which is to refer to my previous framing of ASD as being "intellectual disability without the intellectual disability"--i.e., having all the same impairments and differences from the norm that people with ID have, but not being affected in areas that are purely intellectual. I really like this frame, because it's obvious that many people with ID have social impairments, but it's not pathologized in the same way that is for people with ASD. However, this doesn't hold up as an entire characterization of autism, especially because it erases people who have both ASD and ID, which I don't want to do.

2. Some of this "social impairment" is not really social impairment and just comes from being different, or having impairments that aren't immediately connected to socialization, but affect socialization. For example, a person with schizophrenia may have trouble making friends because their speech is very difficult to understand--loosely connected, and full of references and word choices that only make sense to the speaker. This person's problem wouldn't be characterized first and foremost as "social impairment." However, when an ASD person has trouble making friends because they talk in an unusual way, or only like to talk about certain things, this is characterized as social impairment. It might make sense to say that the person talks in an unusual way because they have language problems, or because they get stuck on talking in a certain way; and that they only talk about certain things because they dislike change and transition. But these ways of looking at the situation are ignored.

I really think that if professionals who characterize large parts of autism as being about "social impairment" would actually look at the discrepancies between the way they characterize ASD people, and the way they characterize people who have somewhat similar disabilities like ID and schizophrenia, they would either have to admit that autism isn't as much about social impairment as they claim it is, or they would have to start characterizing a lot of disabilities as being primarily about social impairment.

Oh right. But about me being disingenuous. I guess I feel like when I talk/write about stuff that is going on with me, I try really hard to avoid looking at things through the "I'm socially impaired" lens? Even though, for whatever reason, that is obviously a part of my life. But I try to call it anxiety, or disabled/non-disabled person clash, and so on, partly because I guess I am just so angry about all the time I spent ignoring all these things I had problems with because I had been fed really incorrect ideas about autism, and I thought that my impairments could only be social, this really pure kind of social impairment that I sometimes imagine doesn't even exist. So I feel like I have a tendency to ignore my part in conflicts when I explain them to myself, or something like that.

It sort of reminds me of how I don't always engage very well with people who are being like "BUT WHAT ABOUT THE PARENTS!! BUT SOME KIDS HIT THEIR HEADS!!" And I mean, I really should--not everyone should, but I enjoy that kind of baseline conversation sometimes, and I think I can be good at it. But I'm just so tired of it that I just tend to be sort of a bitch. And maybe that is bad because the person on the other side can't see that the things they're saying are really cliched, and they don't see most of what I'm reacting to, so they're just upset or confused. I feel like sometimes I frame my life, and ASD in general, in a certain way almost as a political act or a way of creating new narratives that give ASD people more room? Does that make sense?

Please don't take any of this post out of context and try to say that I'm going around lying all the time. I mean we all have frames I'm just honest about it.

12 September, 2010

Our growing and shrinking island

I got weirdly depressed because my friend was talking positively about the head of disability services at our school, who I sort of loathe. (Way out of proportion to what she actually did to me, which was three years ago, but it just was really bad, and I've gotten the impression that she is really great to students with Real Disabilities and not so good to students with Fake Disabilities--to put it bluntly.) The stuff my friend was saying wasn't really different from what I'd expect for her; the two of them had basically been talking about physical accessibility issues and how they suck at school, and how it's even harder now to get the administration to make things accessible because the two students who were full-time wheelchair users graduated and can no longer be invoked as an obvious example of how shitty things are. And she (the head) has now made the administration promise to clean up ice and snow which my friend is really happy about because he had a lot of trouble getting around last winter. (He's ambulatory but has balance problems.)

I think I'm not good at holding two conflicting ideas at the same time, though. So knowing that she works really hard to make school more accessible for kids with mobility disabilities (which it is admittedly not at ALL) makes me feel bad about the fact that I resent her a lot. I also feel bad about the fact that I'm so into "disability stuff" but I didn't even think about the fact that ice would be a problem for my friend. I think that partly because we're going through the MR-->ID shift right now, and also because there are so many annoying euphemisms like "special needs," "developmental delay," "Down syndrome" (used to mean all ID), and "developmental disability" (used to mean only ID), I have a really bad habit of using the word "disabled" when I'm talking about the issues I am especially interested and entrenched in--the issues of people with intellectual disabilities and autism spectrum disorders.

I don't feel good about doing that because I feel like that's exactly what people with physical disabilities sometimes do to us. And it's what some people who identify as allies of disabled people, like the head of disability services, do as well. (In fact I wonder if it's non-disabled allies more than people with Real Disabilities who have such a sense of what a Real Disability is.)

The first time I went on FWD/Forward, I remember being surprised when I read the contributors' descriptions of themselves. Mental illnesses weren't disabilities! Physical disabilities that were invisible weren't disabilities! How could this website be called Feminists with Disabilities, when most of these people weren't Really Disabled? My confusion soon turned into excitement and happiness as I started to feel like maybe, just maybe, I didn't have to apologize four hundred billion times for identifying as disabled. I've really been changed by the disability blogosphere, because I now see issues of ableism, disability, and accessibility as being much bigger and broader and more complex than I thought they were. I know this sounds depressing, but it really isn't, because I can see that many things that I once thought were Problems With No Name are actually related to disability.

However, I guess I also worry that as the definition of "disabled" becomes more broad, there won't be enough attention paid to the needs of people who use wheelchairs. I mean, it makes me really frustrated that I have to depend on my professors' goodwill in order to be successful*, and that I feel like I have nowhere to turn if I have a professor who dislikes me or judges my work harshly because of things related to my disability. At the same time if I do poorly in a class it's not the end of the world. And an infinite number of nice professors can't make campus better for a student who uses a wheelchair. It just completely sucks. I can sort of scrape by in a lot of ways because my impairments clash with people not buildings.

[*I would never, ever go through the disability services office because I know it wouldn't work. On a basic level I need not to be judged for not being able to speak well or understand unspoken rules about what an assignment is supposed to be like--something I can't ask for because a professor is either the kind of person who is going to resent me, or they aren't. Last year when things were really terrible, I asked for some extensions (I've probably asked for fewer extensions than a non-disabled person in the time I've been at school) and I asked to take exams in a separate room on a computer to reduce panic/discomfort. Which is not something that's a stereotype of autism, so I don't think the disability office would support me in asking for that if a professor refused to give it to me.]

I think I just feel guilty sometimes for being so angry about being erased from the mainstream understanding of the word disability. It's funny because to the extent that there is disability stuff at my school, I feel totally erased by that too because it's mainly people with specific learning disabilities. I just go through life feeling there are many things that I'll never be able to do, and I think that something like dyslexia or dyscalculia can shut down certain parts of the world, but sometimes I feel like there's such a small area that I can actually safely move around in and aim for. So I totally find myself mumbling to myself, too, "yeah, come back when you have a Real Disability." Except. You know. Is that ever valid?

I want to develop this more but whatever

So one session at camp, two of my campers were named Mark* and David. They were both men in their forties who had Down Syndrome and had lived with their parents all their lives (well, David had just moved to what his parents called "a residence," a few days before camp started).

Mark's mom gave me a long talk about how slow Mark was, and so on. She stage-whispered that she had really spoiled him. But finally, she reassured me that Mark was "a fine young man."


David's mom said similar things, I guess, about him being slow, but she didn't make me uncomfortable the way Mark's mom did. And she didn't refer to her middle-aged son as a young man.

This was the session that my brain completely shat out because I was working with people too much like me. I guess that technically David and Mark had similar problems. But when David was getting dressed and he spaced out, it was because he started playing with his shoe or very slowly organizing all his '80s TV show theme song tapes. Mark was just sitting there, staring at nothing and waiting.

David didn't like swimming, and when I asked him if he wanted to go swimming, he would say no. Mark would sort of shrug and smile shyly to himself and eventually say something that sounded like an agreement. Then he wouldn't change into his bathing suit and would eventually tell me that he was going to go swimming tomorrow, not today.

I was really stressed because they were both people who required a lot of focus on my part, but emotionally, David was much easier to take. I mean we had problems about a lot of things, but they were the kind of problems you want to have, if you know what I mean. He wanted to stay up and listen to music instead of going to bed. He wanted to make a speech to the whole camp about the circumstances of Michael Jackson's death. He got pissed because he had a really specific idea of what he wanted his Halloween Dance costume to look like, and we couldn't find clothes that fit his requirements.

Like most people who have been alive for four decades, David had preferences and habits. He was a fan of many TV shows, including M.A.S.H. and Dark Shadows, and he would tell me all about them (at my request). He hated to put his head under the water when he was taking a shower. He needed to sleep with a light on. Some of David's personality traits clashed with mine (I find it really hard to sleep with a light on) but, you know, that's what people are like.

Mark just agreed to everything with a sweet smile. He would very occasionally have bursts of energy where he would make really elaborate jokes I didn't understand. I acted really excited about these things because I wanted to encourage him to express himself more, and in fact I did find this stuff enjoyable, but it didn't happen that much.

I also felt uncomfortable because Mark seemed really detached from reality. For example he seemed to think that if he wrote down a schedule of what activities he thought should happen every day, that's what would actually happen. Because of the fact that he was hard to understand, I feel like I could totally be wrong in how I'm interpreting this--maybe it was just another joke--but I know that I was once a person who was very confused about what was coming in from the outside world, and equally confused about how I could affect it. In retrospect that was a scary time and I'm really glad I understand things better now and feel more in control. So it is upsetting to me to think that maybe Mark was stuck in that kind of experience of not really knowing how to affect his life.

I really, really hated living with Mark. On a day-to-day level, I just was frustrated because it was so hard to do daily living stuff with him like getting dressed and brushing teeth, but much deeper than that was the fact that he seemed so distant and, sometimes, submissive to the point of blankness. He made me incredibly uncomfortable, and I felt guilty for being frustrated with him, and guilty that I couldn't help him.

I complained to other counselors about the fact that Mark's mom called him a fine young man. If he'd lived with someone who thought he was a child, that could be why he hadn't developed the strong personality that David had. "No," another counselor replied, "it makes sense for her to say that. They are children. Especially people with Down Syndrome--their faces look so young. How old do you think my camper Josh is?" I guessed that Josh was twenty and the other counselor replied, "He's thirty," as if that proved something. I think he also told me not to be so judgmental of Mark's parents.

However, if Mark was a child, I wasn't clear on why he was writing letters to women asking them to "sleep in my bed please," sneaking into my bed when I was out, showing me this picture in the middle of the night [NOT SAFE FOR WORK NOT SAFE FOR WORK and imagine what it's like to be shown that by someone you've just met when you are half asleep], telling me I had nice legs, trying to kiss female counselors and campers, and other stuff that I don't want to talk about here. All this really freaked me out. Mark was not the only camper who ever acted like that, but there's a difference between someone who's very outgoing, and sometimes crosses the line into sexually inappropriate behavior, and someone who rarely initiates any contact with other people except when they are sexually harassing them. It made me scared of being around Mark--not necessarily scared about what he might say or do, but just scared about the way he was, and feeling like I was failing him because I couldn't understand him or connect with him.

Mark's mom was the only parent or guardian who ever tried to give me a tip when she picked him up from camp. We weren't supposed to take tips, and maybe there were one or two campers I would have taken a tip for, but I gave the money back without hesitating. I didn't feel like I had done a good job with Mark. I felt like I'd done a really shitty job. Mark's mom got mad at me and told me that "the girl last year took it--why won't you?" I tried to say that I already got a paycheck, and I was just doing my job. Finally Mark's mom gave up, got in the car with him and his dad, and said, "Well, I'll just give it to charity then."

"You should give it to something Mark likes," I mumbled as she drove away.

high-functioning is dumb take one

in other news, I continue to hate the term "high-functioning" so much that I want to start some sort of google-bombing project or something so the first result for high-functioning is an explanation of what a dumb thing it is to call someone. I'm going to try to make a really short, simple list of reasons why it is such an insulting and inefficient term.

1. people who are labeled "high-functioning" are still disabled and therefore less "high-functioning" than people who aren't disabled. But referring to someone as high-functioning can cause the conscious or unconscious impression that the person's disability isn't significant or real.

2. describing a person's disability by comparing it to other people's disabilities is kind of messed up. If some people are "high-functioning," then other people are "low-functioning," which I think is a terrible way to describe a person. It makes it sound like the person contributes nothing to the world. But even setting aside how insulting these terms are to severely disabled people, describing mildly/moderately disabled people by saying basically "they're not like severely disabled people" does the same thing as #1--it encourages people to think that a mild disability shouldn't be taken seriously, because the disability is constantly being described in terms of "well it's not as bad as something else."

3. "high-functioning" and "low-functioning" are terms that are ridiculously broad. They imply that if someone is bad at one thing, they are bad at everything, and vice versa. A person ends up being labeled as hf or lf based on just a few things about them. And when (as is often the case) someone is labeled "high-functioning" based on the fact that they are a fluent speaker, or they can pass for someone without a disability, that feeds the already too prevalent belief that being able to speak, or being able to pass, is the same as being successful. This hurts speaking/passing people because our problems are ignored; and it hurts nonspeaking/nonpassing people because they end up receiving services that are way too overfocused on trying to get the person to speak or pass, instead of trying to promote independence, happiness, and communication in ways that are most immediately achievable to the person.

4. "high-functioning" is a term that is ridiculously broadly applied. Since most people who speak are labeled as high-functioning, it's a completely meaningless label that can cover, for example, a person who receives a lot of support in living and has a supported employment job, all the way to a person who lives independently, has a competitive employment job, and has never received any services for their disability.

5. and--most obvious to me, but I never hear people say this--it has always struck me that there is no widely used term "middle-functioning" or "moderate-functioning" (I know those terms are used, but not commonly). But there can't be just two kinds of people with Down Syndrome, or two kinds of people with autism. If you must divide people up by their ability level, you've still got to admit there are more than two ability levels in every disability.


Well, if you really have to divide disabled people up and compare us to each other--which I admit is sometimes necessary, for example when you are thinking about who needs what services, or if you are having a discussion about passing/speaking privilege--I think it is better to say mildly, moderately, severely, and profoundly disabled. Now I still think this is super blurry because again not everyone is at the same ability level for different things, but at least there are four options to choose from instead of just two, and at least the terms don't sound as ridiculously weighty and pervasive as high-functioning and low-functioning. "Mildly disabled" still has the word disabled in it so it doesn't imply that the person's life is awesome and easy. "Profoundly disabled" also has the word disabled in it so it makes it clear that the person's disability is all that is being talked about--it doesn't imply that the entire person, their soul, is "low-functioning." (Also, although I know this is silly, I enjoy using the word "profound" to describe people who are so often devalued.)

However, also try to avoid dividing disabled people up with these fuzzy terms at all. A lot of the time when people are running around saying "high-functioning" or "low-functioning" it would be a lot easier to say the person is good at math, or nonverbal, or something. You can best serve and support a person when you think very specifically about what their abilities are, instead of trying to categorize them in such a general way.

Yeah so I'm serious about wanting to google-bomb this and I would appreciate people's suggestions about what to add and subtract.

08 September, 2010

sound values

I wanted to write about my sensory problems because the way I experience them is pretty different from the conventional characterization (which I understand as: "people with sensory problems react to sensory information as if it's louder/brighter/harder, or quieter/duller/softer, than it actually is"). My sensory problems resemble my synesthesia, or what I somewhat inaccurately call my synesthesia, since it's not as simple as sound=color. For me most sounds are gray and white, or sometimes yellow and brown, and the color isn't as striking as shade, patterns, and texture. The image of the sound isn't something I literally see; I just know what it is.

My negative reactions to sound are caused by the same thing--multiple values. It's not just that sounds are loud, but that they're scary or embarrassing. This means that I don't necessary realize my feelings are about sound. When I was little (just kidding, always), I was scared of flushing the toilet, which in retrospect I understand was about the loud noise, but at the time I just had a vague idea that toilets were scary.

I recently realized that, between the ages of ten and about sixteen, I could probably have been diagnosed with OCD. When I was in a place that had a loud noise (an irregular noise that looks like gravel, like a crowd of people talking or pop music, not a solid noise like a very loud bell) and where I was fully in motion, I could easily get into a state where I was forced to force myself (FTFM) to think about the following things:

1. being caught lying, plagiarizing, or being insincere--for example, once I kept thinking about sending White Stripes lyrics to my friend who liked the White Stripes, and claiming that I had written them though he was bound to recognize where they were from. The White Stripes were actually a whole area of obsession for me when I was about fourteen. I didn't listen to them much--too emotionally taxing--but I associated them with this friend, who I had such a crush on I didn't exactly want to be around him, ever, so I had that same kind of crush on Meg White and would find myself FTFM to think about her, which brings me to

2. having sex with people, having a crush on them, or dating them. I should mention that this wasn't the same as having sincere fantasies, like you would have anywhere. The specific sex- and romance-related thoughts I had in loud places where I was moving often weren't even about people I was attracted to. See, I had this vague feeling that when I was in loud environments and was standing up and moving, other people could read my thoughts. I wasn't even thinking about any particular person's reaction to reading, but just generally becoming so consumed by the possibility that someone could read my thoughts that I would find myself compulsively thinking any thoughts that would be embarrassing. I would think about having sex with or dating elderly teachers, or characters from the Harry Potter books (I wouldn't think about a fandom that was more obscure, because the average person might not realize my thought was about a fictional character, and therefore wouldn't know my thought was embarrassing). Since I also thought I was super unattractive when this stuff was at its peak (when I was thirteen and fourteen), I could also embarrass myself just by mentally referring to any guy I knew as "my boyfriend," since I felt I didn't have the right to have a boyfriend and it was horrifying to even project that onto any guy.

When I was in seventh grade, my parents made me take tae kwon do lessons. My lesson always started with "conditioning," which meant that I had to run in place, holding weights, while my teacher played loud pop music on the radio. This was probably the most terrible thing that happened to me all week; it was even worse than walking through the loud crowded halls of my school, because at school I could make things slightly less awful by touching walls or briefly freezing in place or sticking out my arms stiffly, and I could shorten my journey through the halls by walking quicker. Quite a lot of my seventh-grade energy was devoted to memorizing or writing poems that were very rhythmic so I could recite them in my head when I was doing conditioning and distract myself from the thoughts. Even this didn't make the experience painless, just a little more bearable.

Although I guess I didn't think other people experienced these compulsive thoughts, I was so used to them that it didn't occur to me to ever tell other people about them. I don't know if I thought that conditioning was supposed to be as horrible as it was--I realized about a month ago, when I started writing this post, that maybe if I had explained to anyone how I felt about it, they wouldn't have made me do conditioning or at least would have turned off the music.

Even though sound and motion, or just loud sound, still makes me feel embarrassed, I don't have that much compulsion going on anymore. Which I think is normal--I know that for people with Tourette Syndrome, their symptoms are worst in their early teens and then often fade away. However, I do want to explain this other emotional thing that seems to be tied into all the noise and movement and compulsion stuff.

I don't like being around people I really like. I don't like hearing their voices, seeing them or having them see me, or having physical contact with them. If I have always had to see and hear the person, of course I am inured to it, but the idea of meeting an Internet friend, someone I haven't seen in a long time, or a celebrity is completely unbearable if I like the person very much. I remember once, when I was fifteen, physically running away from my friend who was trying to introduce me to her dad, a children's book writer of whom I had been extremely fond all my life. The idea of entering a contest to meet your favorite actor or musician is the weirdest thing I have ever heard. Why would you want to torture yourself that way?

It's different with Internet or long-distance friends in that there is so much more of a benefit to actually meeting them and getting used to their presence, so you can hang out more in the future. So my solution is just to try to train myself by doing more and more upsetting things, like looking at pictures of the person and talking to them on the phone, and then refraining from looking at the person or touching them when I first meet them. When I was trying to explain to an Internet friend why I wanted to meet him somewhere where I could sit down on the ground, I linked him to this MOM-NOS post, which describes a young ASD boy who gets to meet his favorite country singer. Despite loving the singer, the boy initially refuses to go meet him, and responds flatly and refuses to look at him until he gets used to the singer's physical presence. This really struck a chord with me and is really one of the only examples I have seen of a person like me who just has fundamentally different/crossed values. Really good things are just naturally somewhat painful for me.

07 September, 2010

hi kids, exciting development

so, because executive dysfunction is TERRIFIED of me and basically cries into its handkerchief when I'm around, I have finished putting new stuff on my website and reorganizing/writing some new bits for the disability section, something I've been planning on doing all summer, not one but ONE AND A HALF HOURS before my first class of my senior year. Come on you guys! Impressive!

Stuff is still uploading, so don't go to it right this minute that I'm posting it or you will be disappointed. But some possible things of note:

Difficult Cider (2010 musical odds and ends)

Lyrics for all the songs on the website

a terrible zine/diary thing I made two years ago, about something I'm trying to write a (somewhat more politicized) post about right now

On Speaking Badly: An Unintelligible Pop Opera

["It’s kind of, like, hard because, especially with speaking badly, because a lot of people speak badly who don’t have a disability, and I can’t really say that speaking badly is my thing, and that, um, it’s a hundred percent, that everyone who does it has a disability. I do think, though, that I can say that I think people have reactions to bad speaking that are unfair reactions, and I tend to think that those reactions come out of some kind of ableism, whether people can see it or not. Um...it’s analogous, I think, to, sort of, kids telling each other 'you’re so gay,' or sort of policing each other’s gender. And I think, you know, that can be going on in situations where all the kids are cis and straight kids, but there’s still this bogeyman. And I really remember, when I was a kid, that other kids seemed to not really even understand that a gay person was a real kind of person. It was just this sort of monster that we didn’t want to be. And, um, I feel like the same thing can be true with disability--even if people aren’t even outright saying, like, 'you talk like you’re retarded,' or something like that, or, like, 'you walk like a gimp,' I don’t know--but even if people aren’t saying those words, and even if people aren’t thinking about it as being about disability...I think that, um, we have a very deep sense that people who talk differently or move differently are not quite right. And, you know, whether that comes from not liking disabled people, or whether that results in not liking disabled people, I couldn’t really say, but, um, it’s definitely a problem."]

and last but not least, THE AWESOME DISABILITY SECTION, which is not that great actually, it only has like three things on it, but those things include:

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

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

this has already been up there for a year, but I still think it's like the best thing I've ever written, so: Pulling Rank and Involuntary Assimilation

also I have a suggested reading page which includes a transcript I made of Ari Ne'eman's awesome interview with Madness Radio, which as you may recall I love, cried about, became friends with him solely on the basis of, and so on and such forth.

Now it's 5:46, it's still not done uploading, except I think all the disability stuff is, but not the music. By six maybe it should be okay?

05 September, 2010

The Bible is always saying that you should hate the world and sometimes I feel like hating the world is a way of better loving it. And hating people is a way of loving them better. Being focused on your own pleasure from other people, being afraid of having conflict with the people you love if you don’t do what will make them like you in the short run, is really a way of guaranteeing that the love you experience with them is not real.

My dad and I got to go to my dad’s friend’s church which I really love. The priest was a gay person and he mentioned his coming out process in his sermon. I’m always disoriented when people assume that being queer and religious is some sort of conflict for me. And I am also disoriented I think when queer religious people hold opposing views, having relationships and being open in secular environments, but still kind of acting as though they think homosexuality is wrong when they’re in religious environments. I would not be with God if I was straight I think. And I really fear the loss of God now that I’m in an environment where my sexuality is not such a big issue, because being an oppressed minority breeds hatred—and by hatred I mean the disconnect from immediate gratification and easy connection that causes you to detach enough to treasure everything and try to be consistent and decent in your actions.

It is really frustrating that Christianity is so based in community because it makes it hard for me to do things like go to church because I have so much anxiety about groups. So I wouldn’t say that having autism is helpful to me in the way that being queer is, or if it is it equally helps and hurts me—because autism is a little like the kind of hatred I’m talking about, the tendency to focus seriously on details instead of being caught up in your impression of what’s really going on. And that is I think a gift. But the anxiety stuff is a huge problem and I just feel shitty when I think of all that people have gone through to be Christian when I can’t even talk to people and initiate actions enough to be baptized, which consequently makes it hard for me to make myself go to the church in Oberlin because I can’t take communion, blah blah blah. I pray a lot on it and all but I guess your own mind is the hardest thing to fight.

03 September, 2010


I know I don't really need to decide now (or ever, I can bounce around) but I think a lot about job stuff after college and what kind of things I want to do.

I think something I've been realizing is that I may not be equipped to be support staff for adults who have ID/ASD. This occurred to me during the third session of camp when my brain stopped dead after micromanaging three people's showers in a row. I am a person who is mentally able to shower, but it's only been in the past few years that I've been able to do it well, without becoming spaced or having to use timers and write directions on myself. Even though I can do it now, I guess the foundations are still shaky enough that I have a limit, and don't have enough of that type of function to spare on other people who have similar problems. I'm just not able to do that kind of job long-term, and that makes me angry and sad.

An obvious idea would be to work in a school because there would be a fixed schedule and I could help people in academic areas where I'm not impaired. But I guess what bothers me about that is I feel like so many (non-disabled) people get excited about "special needs" kids because they think they can just waltz in and make the kids not be disabled anymore, especially in the case of autism. Or because they think that kids with disabilities are really cute and interesting--while being creeped out by disability in adults. These kinds of attitudes have always made me want to work with adults and not kids or teenagers because I feel like adults with developmental disabilities are just erased and devalued and the people they end up having as staff are not serious about what they do.

At the same time, the fact that most people who work in special ed are all Nondisabled Person's Burden about it isn't really a good reason not to work in special ed. And my decision to work with adults or kids doesn't affect the stigma against adults so "I have to work with adults" is kind of a dumb principle to have.

I'd really like to end up working with people who have "multiple disabilities," which I think is a really weird term. Last spring I got to spend some time in a class of preteens and teenagers some of whom had that label, and I felt like there wasn't enough of an organized attempt to engage them and develop communication. I mean, I'm not denying that a lot of people with the label probably really do have mind disabilities as well as physical ones, but I just think it's ridiculous to act like you can assess someone's intelligence who doesn't have a communication system. If I had the choice I would really want to do nothing but work on AAC with people all day, because it's so important and I think I'd be good at it, but I think that's sort of a big deal job that you have to go to grad school for and make your own schedule which doesn't seem workable for me.

Obviously I write a lot about being a Disabled Staff Person but it's usually more about identity and about having movement and communication things in common with clients/students that the other staff don't have, and how that is a weird experience. But the other part is that sometimes I wonder if I just am too disabled to be much good to other disabled people. When the person I'm supposed to be supporting doesn't need much more help than I need, or needs kinds of help I wish I could get, it ends up being sort of disorienting and occasionally making me jealous since I'm "high-functioning" enough to be expected to direct myself in daily living when I sometimes barely can.

In Can the World Afford Autistic Spectrum Disorder?, Digby Tantum tries to say that people with ASD are more wise, or creative, or something, because we figure out pretty early on that there are some things we want that we will never be able to have. And sometimes I do manage to convince myself that it's some kind of spiritual gift, but, well, usually not.
I put this on my tumblr and it's my facebook default, but I just want everyone to see the best picture in the world (taken by Janet's counselor Kris):

Janet, a woman in her thirties, is sitting on a picnic blanket on grass in front of a swingset. Next to her is Amanda in a kneeling position. Janet has grabbed Amanda's arm and is trying to make her fall over. She seems to be succeeding and they are both laughing.

I don't miss dial-up and never sleeping but I do miss camp in my own way. Mostly I miss looking up from dinner to realize that Janet was picking her nose with her tongue. And having her pour a cup of water on my head and tell me I was "gross" when I wasn't doing anything.

02 September, 2010

addendum to explain why I'm being an asshole

I was badly affected by autism pop culture for several years. When I was 14 I received what I thought was my first ASD diagnosis. In some ways the diagnosis pissed me off because I felt like it meant people had a right to treat me badly because I thought the definition of Asperger's was being a person other people didn't like. But then I got interested in belonging or identifying with the diagnosis, which in its own way was just as bad.

Now I dislike armchair diagnostics but I do sometimes note to myself that a particular person seems kind of "DD," by which I mean there is something in their movement or emotions that I respond to. When I was 14 I was totally gay for armchair diagnostics but it didn't have anything to do with my own feelings, it just had to do with whether someone's behavior fit into an autism pop culture/autism pop science stereotype. I annoyed people by telling them they seemed "autistic" at the very slightest hint of social problems or rigidity. I also read books like The Curious Incident of the Dog in the Night-time and was convinced that I was just like the characters with autism, even though I wasn't like them at all. It was very important to me to identify things I did as being symptoms of autism, even when it didn't particularly help to do so and even when it meant denying my own experiences.

As I got older, I realized that I wasn't much like an autism stereotype and it was dumb to want to be one. I started working harder on talking to people, keeping myself out of messed-up situations, and doing things that I had anxiety about. The way I learned to do things was often different from the standard, and I certainly knew that I was working around or against something that made it hard for me to do them the conventional way. But I didn't think of that thing as autism or Asperger's. In fact, I felt guilty that I had even said I had either of those things. People with Asperger's were socially impaired in a different way from me, and people with autism couldn't talk or look after themselves.

Sometimes I found it necessary to explain to people why I was having trouble doing stuff or why I was different. I would say, "I used to have Asperger's" or "I was diagnosed with autism when I was a kid." It didn't occur to me that my impairments could be referred to as autism or Asperger's because I thought that there was only one highly specific way that verbal Autistic people could be, and I wasn't like that.

This wasn't useful. Eventually I found out it wasn't even true. I found that out by being with people with ASD, and reading books and articles that actually centered the experiences of people with ASD. All of which were pretty unpopular compared to The Curious Incident of the Dog in the Night-time.

Whyyyy did this happen

This post is the dumbest example of Oppression Olympics I've ever seen. I know that they come from a place of caring about their friend, but that isn't a reason to set up a weird competition between depression, eating disorders, and autism. This person is jealous of all the portrayals of autism in pop culture, because "so many more" people have depression and eating disorders, and every TV show and movie about eating disorders doesn't count because it's either too cheesy or not popular enough. "Don't let society get you down just because YOUR mental health issue isn't 'popular'," the person admonishes. Oh, the joys of having a "popular" "mental health issue."

Okay dude, I know the pull of Oppression Olympics is a strong one, but seriously? It's almost always wrong. God knows I find myself thinking, "Oh man, wouldn't it be cool if people thought about autism the way they thought about intellectual disability? Instead of thinking it just makes people be insensitive geniuses who do weird shit, who we should all crowd around and stare at like zoo animals, wouldn't it be cool if people just understood that autism makes you not be able to do things that most other people can do? Which sometimes seems to result in insensitivity, genius, and weird shit, but isn't really those things?" (Note that despite all the autism pop culture Southpaw has consumed, they haven't realized that autism is a disability not a "mental health issue.")

But then I remember that even though people with ID aren't treated like circus freaks, they have their own giant pop culture pile of shit. The fact that they're not seen as ~fascinating geniuses~ often means that they're not treated as present at all. Most references to intellectual disability in pop culture consist of making fun of people with ID or using words like "retarded," in a tone that implies people with ID don't actually exist except as the subjects of jokes. A little space is reserved for glorifying the non-disabled people who live and work with people who have ID. Since pop culture forgets that people with ID can be fun to be around, or even have unique personalities, they can think of nothing more saintly than spending time with one of those boring blank slates.

I think about Precious, and I think about Glee, and I totally stop feeling jealous of people with intellectual disabilities.

Similarly, I remember being a kid and watching a Lifetime movie about a girl with anorexia and bulimia. Lifetime movies are too cheesy according to Southpaw, but let's for a second ignore the implication that all eating disorder pop culture has to be good in order to count, since most autism pop culture sucks and therefore doesn't count either. I have never seen a Lifetime movie about someone like me. I have never in my fucking life seen any movie or TV show where a person with autism was the protagonist instead of a device to shock or burden the protagonist. (I know that at least two movies exist with Autistic protagonists, but a sitcom also existed where all the main characters had eating disorders. Being able to point out some exceptions doesn't disprove the overarching trend.)

I also feel really fucking scared and uncomfortable when I realize that a TV show or movie contains a character with ASD. It is so often that the character hurts or kills another person or is involved in crime. Even when the character doesn't do anything worse than unknowingly insult people (which is pretty much a constant factor in autism pop culture), that is still damaging to the lives of people with ASD. We are portrayed as more likely to hurt people than help them.

It is not very fun to talk to some person who has become "interested in autism" thanks to consumption of autism pop culture or the almost as deadly autism pop science. These lovely people will insist that a verbal person has Asperger's even if the person has a different ASD diagnosis (or simply doesn't identify as having Asperger's, which should be enough). They will patronize the fuck out of people with ASD and explain a bunch of basic shit to them because they mistakenly think we can't learn. Awesomest of awesomes, they will announce that someone is "claiming to have autism when they're just a little awkward." You see, based on the wacky, overdramatic behavior of Autistic fictional characters, APC consumers think that all ASD people act really weird in a very specific way, all the time. And since they'd rather listen to pop culture than real PWDs, these poor creatures never get better. They are truly trapped inside a shell of autism pop culture, which prevents them from connecting with other human beings.

However, I'm not saying it doesn't suck that depression and eating disorders aren't portrayed that much in pop culture. It sucks a lot. Good observation! But why can't you just write a post about that, instead of a post about how people with autism have it sooo easy with our "popular" "mental health issue" (a post which includes the bizarre caveat "I love discussing Autism"--well, good for you, I fucking don't)? Wouldn't that be nice?

(By the way, I was googling "Oppression Olympics" and I found this post on Racialicious about it. I really love comment #13, and the whole comment thread in general.)
I was just wondering, does anyone think that caring about language is sort of stupid? It's a genuine question--I mean, I write really long posts sort of dissecting different phrasings and totally obsessing over it, but is this just a distraction from what's actually important?

Like, I tend to like person-first language, but I feel like if you look at it for more than a second it becomes really offensive. At the place where I worked this summer we were always being told, "They are a person first and a disability or diagnosis second," but I don't know what that means. If you have a developmental disability then it affects your personality and your life experience a lot. Lots of people at camp did things that few if any non-disabled adults would do, and sometimes it was these things that made a person awesome. Saying "they are a person first" and shunting the disability to the side seemed like a way of saying that a large part of who someone was didn't actually matter.

However, just as I think it was silly to constantly say "They are a person first," I also think it's kind of silly for me to make a big post about the problematic nature of that phrase, because I don't think the other staff I worked with actually lived its implications. So it didn't really affect anyone.

Last summer I really enjoyed the YouTube videos of icecoldbath, especially a series where she talked about the implications of using certain words about trans people. She made a video explaining why you should say "trans woman" and not "transwoman," since trans is just an adjective and combining it with woman implies that a transwoman is a whole other kind of woman, instead of just a woman who is trans. Before watching this video I guess I wrote "transwoman" and "transguy" without spaces, and now I use spaces, but now that I think about it I don't know if this makes me a better ally in any real way.

I mean, obviously there is a point where language does matter, which I'd place around "cerebral palsy sufferer" and "retard" and using the wrong pronouns, but I think that at some point it may stop. I mean, I love dissecting it but I don't know if it's useful.