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.


  1. Right on.

    I think this is probably on a continuum with the things you mention in your earlier posts about passing, and about the intense double standard of what constitutes Acceptable Behavior for normal vs. DD schoolchildren.

    It's like your being ASD, in your mother's and society's eyes, automatically obligates you to do everything you possibly can to erase your differences. Even when those differences have nothing to do with disability, but are just you having your own, somewhat quirky personality.

    The pressures might not be the same, or as strong, for you as they are for the children you describe in your essay "They hate you. Yes, you", but I do think it's all of a piece.

    Anyway, you're awesome and thank you for articulating this!

  2. I think you are pretty, but it doesn't matter. You shouldn't have to apologize for being autistic, and it's good that you're standing up for yourself. Your speech therapist has a lot of nerve talking like that. It's more than ableist, it's sexist and wrong. You need to do what's right for you, and if you have blue hair and don't wear "nice" clothes, that's okay.

    I wear nice clothes sometimes because I like looking pretty. But I make sure the clothes don't give me sensory issues. No scratchy materials and definitely no velvet (it makes my skin crawl). But if I'm having a bad day I just want to crawl into a T-shirt and not worry about it. And that is every human's right.

  3. I see the exact opposite in a lot of parents, at least in how they deal with their kid's clothing and "dressing nice." So many parents I know dress their kids with disabilities in really worn hand-me-downs and downright dorky outfits (even though their other nondisabled children dress very nicely), almost with the attitude "hey, they're retarded and don't care, why should I spend money on them dressing well?" I think I see this trend over-represented with kids with Down's syndrome versus autism/cp/etc... don't know why this is though.

    However, other parents do dress their kids nice almost to "cover up" for their disability. Such is the case with one of the families I work with, whose twin boys have autism. Their mother spends unholy amounts of money on them so they can have the most hip jeans, fashionable shoes, and cool t-shirts. It isn't really for their sake (in fact, they have sensory issues with half the clothes they wear), it is so that when she brings them out in public, people will be less likely to assume they have a disability or something and SHE won't feel awkward about it.

    My brother Kyle has made a point to choose much of his own clothing (at least what is bought for him, not necessarily what he wears every day). He loves picking out shoes, and usually gets really colorful, eccentric Vans slip ons. The first pair he picked out, when he was 11 or so, were neon green and pink, and were being sold as "girl's" shoes. But my dad, who is usually very rigid in his perception of gender roles, just rolled his eyes and bought them for him. "Looks like you're just going to dress weird like your brother and sister," he said.

  4. Lindsay: I don't know if anything is non-disability-related when you have a disability that affects your physical experience of wearing clothes, and your ability to deal with change. Which to me makes it even more frustrating that I would be expected to wear clothes I'm not physically comfortable in and am not used to emotionally. Also--although I admit this may seem like a stretch to other people--my hair feels like an expression of culture/identity. I don't like waiting for people to figure out something's wrong with me, so I try to give them a hint. And a lot of the time it is a good way to start conversations with more obviously developmentally disabled people, who will ask why my hair is like that, or tell me what they think of the way it looks.

    Kathryn: I do care about how I look (today was probably the first day this year I didn't brush my hair and put on makeup when I woke up, and I felt super unbalanced all day) but my idea of pretty isn't the same as my mom's or some other people's. I was really annoyed last summer because I accidentally got a haircut I hated (for both sensory and aesthetic reasons) and my mom protested that I looked more "pretty" than I had before because it suited my face better. As if my idea of the way I wanted to look wasn't important. This bugs me because I am seen as not taking care in my appearance (with attendant assumptions that I have low self-esteem or am sexually repressed, etc. etc.) when in fact I do take care, I just don't have the same goals that I'm expected to have.

    xine: Yeah, around the time I was having the conversation with my friend's mom about how she always dressed my friend nicely, my friend started going on a riff about how "kids with Down Syndrome always have those little jerseys and baseball caps." Now my life goal is to have a kid with Down Syndrome and dress him in a little tweed librarian outfit or something else really fancy. Although as soon as my kid will talk he'll probably be mad and refuse to dress like that anymore.

    I do think it's obviously shitty if someone puts their kid in ugly/messy clothes just because the kid is disabled. Joe always had nice corduroys and sweater vests and stuff, and I thought he looked really dapper (basically how I want to dress my future kids). But you should dress your kid in awesome clothes because the whole point of having kids is getting to force someone to dress the way you want them to dress! (In my opinion.) You shouldn't dress them that way to help them pass and/or show their submissiveness to Normal People. And you should stop wanting to be in charge once they start expressing opinions about how they want to dress.

    I like the Kyle story. How old is he now? Is he like my age, or older?

  5. Haha... glad I'm not the only one who has noticed the Kids-with-Down's-Syndrome-in-little-jerseys trend. Kyle is seventeen.

  6. At one point, my mom wanted to dress me up nicely as well, or better yet, in trend (since much of today's style actually is not "nice"). I had a very rough time in seventh grade and continuously hugged a boy that did not like me back, and of course got into trouble with the school. My mom was worried that this kid just thought I was really weird so he had no sympathy for me, and wanted me to get into trouble. She said something on the lines of "I am going to get you a new wardrobe of clothes so that all the boys and girls will think you are cool, and I will get you off of your numbers and excessive cat talk, since that will only make people think you are weirder." This pissed me off for obvious reasons. I got into trouble, because I bothered somebody, not because I was weird. Whether or not my autism may have caused me to do this, the day-long suspension was fully deserved; yet my mom thinks this kid and his mom were real assholes.

    Even though I disagreed with my mom on the subject of altering my quirks (which I always have and always will), I decided I might as well wear trendier clothes, because yeah, sometimes first impressions can make a huge difference when dealing with the neuromajority. If you recall the rhetorical triangle with the three: Ethos-ethics Pathos-emotions and Logos-logic. Ethos involves the idea of making yourself appear credible, and it usually does mean showing high college degrees all the way down to wearing appropriate attire for the discussion. To me, every day seemed to be a huge discussion on what is in my best interest.

    So I have started shopping around the fancy clothes stores and people have noticed my style change. I still had my quirks and I still wore things that agreed with my senses. After I went to a more open minded high school, I developed a strong interest in fashion design and decided, "why follow trends when you can create your own!" :D Now to this day, I wear lots of bright colors and handmade knits. I still enjoy looking nice, as it does make me feel more self-confident. But I have absolutely no problem with people who just want to dress comfortably or plainly.

  7. I didn't have a mom around to dress me, so I sort of figured out by myself that if I dressed to other people's standard of nice I was treated WAY better. I was too young to understand why but I caught on pretty quickly. So in a sense I did it to myself to hide my own disability. I pretty much dress how I want now, but I ALWAYS consider if my choice is too weird or will appear completely eccentric. I just try to stick with looking like an indie chick or something that is still a little rock n roll and relatable as opposed to super weird or total conformity. It's probably bad that I do this but it helps my self confidence to know that I am going to please the majority of people with my appearance. Not everyone mind you, but most. And there are still some people who would say I do not dress my age and some people who think I dress too much like a mom. Doing this is what makes me the most comfortable in my own skin, so for me it works.

    P.S. I like your blue hair and the way it is cut, that being said I would like your appearance no matter what. You should tell your mom that I have tried the whole "girl next door" conformity look and it honestly brings more attention to my eccentricities than if I were to just dress like myself which is slightly off. Because I am slightly off. If you dressed perfectly people would expect certain behavior of you and be more taken back if you didn't meet up to there stereotypes of really pretty and stylish girls, etc. Just a thought. You should never take me too seriously though. :)

  8. @Amanda,

    "I don't know if anything is non-disability-related when you have a disability that affects your physical experience of wearing clothes, and your ability to deal with change."

    Fair enough.

    I guess I was trying to draw a distinction between clothing choices that have really obvious, immediate origins in disability --- like, say, an inability to wear particular fabrics, or shirts with tags in them, due to sensitive skin, or a need to wear only slip-on or Velcro shoes due to an inability to tie one's own shoelaces, etc. --- and things that, while they might still have something to do with disability, are connected in less obvious ways --- more personal, aesthetic choices like the color, cut and fit of a garment. Obviously one's autism might also influence this --- we might perseverate on certain colors, or find fitted garments uncomfortably tight (or, alternatively, prefer a snug fit that other people might think is too tight to be "appropriate"!) --- but there are also other factors in play, too, like gender, subculture, and personal aesthetics. (Like, all else being equal, I will choose a shirt that's black, or sometimes a bold color like bright red or blue, over a white, beige, gray or pastel-colored one. There isn't anything inherent in my being autistic that accounts for this; it's just that I like bright colors, am performing some version of masculinity, which makes bold primary colors preferable to equally bold pinks, purples or floral patterns, and also like goth fashion, which means black is going to be very prominent in my wardrobe.)