1. I can wear clothes that don't match (mismatched patterns, sneakers with a dress, pajamas in the daytime) and people will perceive this as an expression of my style rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.
5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.
(ETA: can someone explain lol_meme to me? I'm so confused right now.)
Showing posts with label adventures in looking okay. Show all posts
Showing posts with label adventures in looking okay. Show all posts
26 January, 2011
12 August, 2010
more thoughts about disability and presentation
(this is sort of part two of squandering slack)
I'll spare you a long description of my mom's problems with the way I look and dress. Besides, I write about them all the time. But it is just sort of a clusterfuck in the summer because my mom has logic on her side, i.e. it isn't reasonable to wear jeans in the summer, especially if you get easily overheated like I do and tend to throw up and have headaches. So my mom picks out the kind of pants she thinks I should wear, which are usually knee-length, and then puts me under pressure to wear them. And I go along with it sometimes even though I really want to keep wearing the same pants I wear all year. But I really don't like those other pants at all.
This summer the best thing ever happened though, because I got several pairs of athletic shorts to wear at camp, and I realized I liked them even better than jeans, and I also realized from observing other counselors that it is pretty standard to wear shorts in the summer and that's actually a more common thing to do than wearing knee-length pants. So I realized that I didn't have to feel awkward about not wanting to wear capris and they probably actually looked weirder than jeans.
You can spare me any shit about how I shouldn't care whether my clothes look weird or not. I can care if I want. And in a lot of ways I don't care, for example I could wear short shorts in order to look more standard but I like athletic shorts better. But it's just sort of galling to be wearing the capris and feel like I not only look different, but I look like I'm not in charge of how I dress.
It sort of reminds me of when I was younger and my mom would always try to tell me what I should say to other kids when problems arose. Even though the things I said really screwed me over, I wouldn't use her scripts either. I knew that her word choice was slightly off and would sound weird coming out of a 12-year-old's mouth. I feel like normal people don't think about word choice, but when they are kids they do pick out people with unusual word choice and make fun of them, so I was very aware that I already didn't use the right words all the time. If I used the wrong words I wanted them to be my own, even if they were catastrophic ones.
I was getting strangely and incoherently annoyed in an attempt to explain to my friend why it makes me mad to see a thirty-year-old disabled woman in the same high-waisted pants that her mother wears. Those pants look normal on the mother, but on the daughter they "look disabled." Except that when I say that, it sounds like I'm saying that the daughter should be dressed in order to pass, and that's not what I mean. I just feel like, whether or not a person is obviously disabled, there's a certain style of dressing that is prevalent among disabled people and makes the person look like they didn't pick out their clothes themselves. It can look very "nice"--very clean and neat--but it looks awful to me.
When I was 14, my mom forbid me to wear sneakers and skirts together, because she said it would make me look like I was mentally ill. I guess wearing combinations that aren't considered to go together, or doing other things that seem over-the-top, "looks disabled" in a different way, but to me, that way looks really good. I know a few people with ID who always wear a lot of necklaces and medals and to me that is the opposite of the other kind of looking disabled--disability is visible, but it's visible because the person is making different choices from the choices someone else their age would make, not because an authority figure is making those choices for them.
Am I making sense? I always feel embarrassed when this turns into a blog about arguing with my mom.
I'll spare you a long description of my mom's problems with the way I look and dress. Besides, I write about them all the time. But it is just sort of a clusterfuck in the summer because my mom has logic on her side, i.e. it isn't reasonable to wear jeans in the summer, especially if you get easily overheated like I do and tend to throw up and have headaches. So my mom picks out the kind of pants she thinks I should wear, which are usually knee-length, and then puts me under pressure to wear them. And I go along with it sometimes even though I really want to keep wearing the same pants I wear all year. But I really don't like those other pants at all.
This summer the best thing ever happened though, because I got several pairs of athletic shorts to wear at camp, and I realized I liked them even better than jeans, and I also realized from observing other counselors that it is pretty standard to wear shorts in the summer and that's actually a more common thing to do than wearing knee-length pants. So I realized that I didn't have to feel awkward about not wanting to wear capris and they probably actually looked weirder than jeans.
You can spare me any shit about how I shouldn't care whether my clothes look weird or not. I can care if I want. And in a lot of ways I don't care, for example I could wear short shorts in order to look more standard but I like athletic shorts better. But it's just sort of galling to be wearing the capris and feel like I not only look different, but I look like I'm not in charge of how I dress.
It sort of reminds me of when I was younger and my mom would always try to tell me what I should say to other kids when problems arose. Even though the things I said really screwed me over, I wouldn't use her scripts either. I knew that her word choice was slightly off and would sound weird coming out of a 12-year-old's mouth. I feel like normal people don't think about word choice, but when they are kids they do pick out people with unusual word choice and make fun of them, so I was very aware that I already didn't use the right words all the time. If I used the wrong words I wanted them to be my own, even if they were catastrophic ones.
I was getting strangely and incoherently annoyed in an attempt to explain to my friend why it makes me mad to see a thirty-year-old disabled woman in the same high-waisted pants that her mother wears. Those pants look normal on the mother, but on the daughter they "look disabled." Except that when I say that, it sounds like I'm saying that the daughter should be dressed in order to pass, and that's not what I mean. I just feel like, whether or not a person is obviously disabled, there's a certain style of dressing that is prevalent among disabled people and makes the person look like they didn't pick out their clothes themselves. It can look very "nice"--very clean and neat--but it looks awful to me.
When I was 14, my mom forbid me to wear sneakers and skirts together, because she said it would make me look like I was mentally ill. I guess wearing combinations that aren't considered to go together, or doing other things that seem over-the-top, "looks disabled" in a different way, but to me, that way looks really good. I know a few people with ID who always wear a lot of necklaces and medals and to me that is the opposite of the other kind of looking disabled--disability is visible, but it's visible because the person is making different choices from the choices someone else their age would make, not because an authority figure is making those choices for them.
Am I making sense? I always feel embarrassed when this turns into a blog about arguing with my mom.
10 June, 2010
squandering slack
It is a truth universally acknowledged that you probably can't write a really srs bsns post about having blue hair. Also I'm completely aware--well, as aware as I can be--that having blue hair and not "dressing nicely" are less risky things to do if you are rich and white. So even if I feel happy about looking the way I want to look, I don't mean to write about it in a way that implies that other people who would like to dye their hair and not dress nicely necessarily can/should do so.
That said, this is sort of a constant struggle I have with my mom (and by constant I mean it's now on a really low level just because my hair has been like this for a long time) which is summed up really well by something she told me two years ago. She told me that when I was a little kid, my speech therapist tried to reassure my parents by telling them that I was pretty, so people would cut me some slack.
I think you possibly know how I feel about the idea of people being "cut slack." Like a person, part three covers it a little. But to be specific, I just feel that I put in much more work with other people than they do with me, so I think they should be able to handle it that I'm slow or I don't talk very well or they think my expression looks nervous. And I don't really think anyone is being cut slack if I am not being--what, harshly judged, for not being as fast or talking as loudly and precisely? How is not being ableist cutting me slack?
Anyway, the context in which I was told the story about the speech therapist was that I was being told why I shouldn't dye my hair--the idea being, I need to make myself as conventionally pretty as possible, so that people will forgive me for being disabled.
I don't like this so much.
My mom and I also have some issues about me dressing nicely (which, you know, is difficult/undesirable for some of the same reasons that being femme would be). I was complaining about this to my friend's mom several months ago (my friend has CP) and she said that she always made an effort to dress my friend nicely when he was a little kid, so that his teachers could see that his parents cared about him and would make a big deal if anything bad happened to him. I've also heard a few times about people with ID and ASD whose parents were really really obsessed with having the person dress nicely. (You know what dressing nicely means, right? I don't know how specific I can be. Or if it makes sense to be specific about something like this.)
I understand why parents of disabled kids worry about their kids dressing nicely, but it's hard to want to dress nicely when dressing nicely feels like supplication. Even if there weren't real sensory and aesthetic reasons that I don't like to dress nicely or have my hair a normal color, it would leave sort of a bad taste in my mouth. Dressing nicely becomes a way of saying: please don't notice I'm disabled. Or, if you do, please forgive me.
24 February, 2010
the blog schism
so I always feel bad when I post about my dumb attempts to give myself a haircut or something, and/or evidence of Vincent Kartheiser possibly being a baby llama pretending to be a person--however, I never want to post anything on my 5-year-old livejournal, because there's way too much boring/annoying stuff on it, and even though the haircut stuff is not exactly important, I think it's too entertaining to be on the Awful Livejournal, so it has a new home:
[deleted 8/9/10, not doing that tumblr anymore]
in other news, my weird shutdown that started Monday is sort of coming and going. Is that even possible? My head just always seems to be hurting and sometimes I take such a long time to understand anything and can't think anything through. There have been some moments of not-shutdown, though.
I'm going to go to Student Counseling. I just feel stupid because I'm presumably traumatized from going to another country where I didn't talk to anyone? I just feel embarrassed because some people have real problems. But when I really think about it, as long as all the appropriate sensory factors are in place, I haven't really had sleep problems for several years. And now I wake up in the middle of the night on a regular basis, often feeling really freaked out.
Sorry this is navel-gazing. I actually am going to try to be pious/academic and not post on here. And when I do, thanks to the tumblr sublimation, it's always going to be these really serious and in-depth disability-related posts! It's going to be amazing!
[deleted 8/9/10, not doing that tumblr anymore]
in other news, my weird shutdown that started Monday is sort of coming and going. Is that even possible? My head just always seems to be hurting and sometimes I take such a long time to understand anything and can't think anything through. There have been some moments of not-shutdown, though.
I'm going to go to Student Counseling. I just feel stupid because I'm presumably traumatized from going to another country where I didn't talk to anyone? I just feel embarrassed because some people have real problems. But when I really think about it, as long as all the appropriate sensory factors are in place, I haven't really had sleep problems for several years. And now I wake up in the middle of the night on a regular basis, often feeling really freaked out.
Sorry this is navel-gazing. I actually am going to try to be pious/academic and not post on here. And when I do, thanks to the tumblr sublimation, it's always going to be these really serious and in-depth disability-related posts! It's going to be amazing!
23 February, 2010
reasons to have bangs/reading
I've never liked having eyebrows and today I decided to stop having them. There are kids at Oberlin who draw lines on their faces or grow half a beard, and I figure I won't be here forever. Maybe I won't even be able to have green hair when I'm older (that would be a tragedy but I'm slo-o-o-owly trying to adjust myself to the idea that maybe super-blond would look okay; red is definitely a trial and there's no way I'd ever go back to not dyeing it at all).
(I deleted the pictures because I think they're creepy.)
I'm also trying to give up makeup for Lent (to some extent). Although I just realized that drawing on eyebrows is going to take WAY more time. Argh.
Speaking of people who don't have eyebrows, I was thinking of writing about reading people. I mean, trying to figure out if people are Like Me (which means, I guess, ASD people, intellectually disabled people, and some people with mental illnesses, or people who are just sort of on the border of having something, but actually don't--well, if you know what I mean, you know what I mean, and if you don't, you don't). This is an activity that can be comforting and a lot of fun.
In Edinburgh there was this girl in my building who was also from America--an international student, a first year. I only talked to her a few times, but if you asked her a question, she would answer it and then say, "You?" I guess this is another thing that you either know what I mean or don't, but I wish I had tried to be friends with her. I wish I could have said, I know you plan out what you say before you say it, but you don't have to do that with me.
There is a way of being serious and concerned and planning things out, and if you pass to normal people, they fucking ride you about it. Don't be so serious! Don't get so upset! Why do you have to know exactly what's going to happen? Just be yourself! Just do whatever you feel like doing! Whatever I'm concentrating on is never as hard as hiding my look of concentration to calm the norms. Planning out what to say is not so bad, is even fun, but delivering it so it doesn't sound like a script is just--they frequently catch you, and if it's something that's supposed to be spontaneous, well--
What I'm trying to say is that even though I think Evelyn Evelyn is kind of a stupid idea, I wasn't that upset about it. I mean, I completely respected that other people were and admired them for saying so. However, then I saw this video (start at 2:20--however, a really good example is 4:10):
This video makes me feel upset because Amanda Palmer is using body language that isn't hers. I'm not into Jason Webley's music, so I don't know what his body language is usually like, but she doesn't move like that or make those kind of facial expressions or hold herself that way. There are lots of people who do have intense/scared/stiff/otherwise nonstandard body language who are musicians--like Jeff Mangum, Laura Marling, and Daniel Johnston. It's awesome that their fans like the way they move or don't move (in fact I'm a fan of all three of them, and love watching videos of them). But I've been a fan of AFP for years and her body language and expressions in that video are super fake.
It just kind of hurts my feelings as a person who actually moves/looks like that. Is that a weird thing to say?
ETA: I think when I shaved my eyebrows I was possibly in some kind of shutdown that I might still be in. I think I've been in it for like two days. The Longest Shutdown sounds like the title of a children's book or maybe something for the Guinness Book of World Records.
I think I might need to talk to someone, I mean I started doing this blog as a way of being absent because I didn't want to feel things that might make me hurt myself. For the past two months I've been returning, and that is an odd experience, like your blood coming back into your hands after you've been cold outside. I don't know. It would explain why I can't seem to get anything done, if there's actually something seriously wrong with me. When I think about the UK I almost can't remember being there. I think of time visually and it's just, August, Christmas. I know I was there but I can't see it.
(I deleted the pictures because I think they're creepy.)
I'm also trying to give up makeup for Lent (to some extent). Although I just realized that drawing on eyebrows is going to take WAY more time. Argh.
Speaking of people who don't have eyebrows, I was thinking of writing about reading people. I mean, trying to figure out if people are Like Me (which means, I guess, ASD people, intellectually disabled people, and some people with mental illnesses, or people who are just sort of on the border of having something, but actually don't--well, if you know what I mean, you know what I mean, and if you don't, you don't). This is an activity that can be comforting and a lot of fun.
In Edinburgh there was this girl in my building who was also from America--an international student, a first year. I only talked to her a few times, but if you asked her a question, she would answer it and then say, "You?" I guess this is another thing that you either know what I mean or don't, but I wish I had tried to be friends with her. I wish I could have said, I know you plan out what you say before you say it, but you don't have to do that with me.
There is a way of being serious and concerned and planning things out, and if you pass to normal people, they fucking ride you about it. Don't be so serious! Don't get so upset! Why do you have to know exactly what's going to happen? Just be yourself! Just do whatever you feel like doing! Whatever I'm concentrating on is never as hard as hiding my look of concentration to calm the norms. Planning out what to say is not so bad, is even fun, but delivering it so it doesn't sound like a script is just--they frequently catch you, and if it's something that's supposed to be spontaneous, well--
What I'm trying to say is that even though I think Evelyn Evelyn is kind of a stupid idea, I wasn't that upset about it. I mean, I completely respected that other people were and admired them for saying so. However, then I saw this video (start at 2:20--however, a really good example is 4:10):
This video makes me feel upset because Amanda Palmer is using body language that isn't hers. I'm not into Jason Webley's music, so I don't know what his body language is usually like, but she doesn't move like that or make those kind of facial expressions or hold herself that way. There are lots of people who do have intense/scared/stiff/otherwise nonstandard body language who are musicians--like Jeff Mangum, Laura Marling, and Daniel Johnston. It's awesome that their fans like the way they move or don't move (in fact I'm a fan of all three of them, and love watching videos of them). But I've been a fan of AFP for years and her body language and expressions in that video are super fake.
It just kind of hurts my feelings as a person who actually moves/looks like that. Is that a weird thing to say?
ETA: I think when I shaved my eyebrows I was possibly in some kind of shutdown that I might still be in. I think I've been in it for like two days. The Longest Shutdown sounds like the title of a children's book or maybe something for the Guinness Book of World Records.
I think I might need to talk to someone, I mean I started doing this blog as a way of being absent because I didn't want to feel things that might make me hurt myself. For the past two months I've been returning, and that is an odd experience, like your blood coming back into your hands after you've been cold outside. I don't know. It would explain why I can't seem to get anything done, if there's actually something seriously wrong with me. When I think about the UK I almost can't remember being there. I think of time visually and it's just, August, Christmas. I know I was there but I can't see it.
21 January, 2010
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.
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