Today at Walgreens I got my TB test, and I also got a COUPON for $3 off on any purchase above $15. Just like Walgreens wanted me to I immediately forgot what I was doing and wandered around the store trying to find $15 worth of worthy stuff.
In the toy aisle was a $15 FASHION FLUTTERSHY:
This is probably the most torturous thing that could happen. That is my authentic cell phone picture of the FF and you can see that she really wanted to go home with me. Forever.
My purse is like this:
I was also carrying/fumbling with other stuff. There was no way that I could bring Fashion Fluttershy to, on, and from the bus without dropping her and letting her be hit by a car. I was forced to use my coupon on lipgloss, batteries, and hand sanitizer, which are almost the only things I ever buy. Really hate my life. Stuff is miserable.
This is the only notable thing that happened to me today and I swear to God, I used to have a part of myself that would feel worried and guilty upon experiencing it. You guys! WHERE'S THE AUTISM?
Probs I should be reminded that I have a disability whenever I do anything, or my disability is not real.
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I don't think it's really surprising that I feel this way, because our society treats autism like some kind of super strict religion. Even people who think that autism is tragic still seem to think it's a lifestyle. It's just not the RIGHT lifestyle. Autism is characterized as "stealing" people because little kids are growing up with the wrong personality. It's basically like they're joining a gang where you don't look people in the eye or have the right feelings.
I would argue that this explains why most anti-autism rhetoric doesn't focus on the feelings of people with autism. If autism is so bad then they would have a lot to say about their suffering, right? Wrong. We wouldn't want to listen to what they say anyway, because they're in a gang!
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For some reason, I always find myself more annoyed by autism pop culture that pretends to be positive. Like, focus-grouped autistic memoirs and especially interviews and profiles by non-disabled journalists.
These interviews and profiles start out with pretty much the same question or concept every time.
"When did you realize you were different?"
This is the cue for the interviewee with autism to tell an exotic story about when they were a kid and used to line up all their sparkplugs/cow fetuses. It needs to be sparkplugs/cow fetuses, and not Transformers or Barbies, because non-disabled kids have those too. The interview can then develop into something that sounds like it was written by a barker at a Depression-era freakshow.
Like other people, I used to be a child. I did lots of interesting and boring things. But talking about those things isn't the most respectful way to do an interview with me as an adult. Actually, age aside, asking me about how different I am just kind of sucks.
Every single time I see an interview like this, I wish the person with autism would say, "You mean, when did I realize I was gay?"
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I am different from the norm in a lot of ways--just like everyone else. Like many people with my disability, I did and do love stuff that non-disabled people love too. This summer the New York Times wrote the most obvious article in history about how kids with autism really like trains. Anyone who doesn't live under a rock already knows this. Still, I doubt that my beloved toothbrush
(
)is being purchased only for autistic jaws.
In writing about this I deal with an obvious trap. If I try too hard to emphasize the normality of people with disabilities, I might feed into "disabled people are just like everyone else"--a 100% true statement that also happens to be the most annoying trope of all time.
Some fun facts are true about my recent trip to Walgreens. For example, if you sent a non-disabled person to choose $15 worth of stuff to buy I can guarantee they would be able to find those items in the store much more quickly than I did. Without causing me much grief on a case-by-case basis, my comparative slowness adds up. I'm really impressed that two girls in my nurse aide class go to work every day after class. After spending ten hours of my day in class and in transit, I find it hard to even eat when I get home and things like showering and laundry are tasks I can't always manage.
I forget why, but the guy who read my TB test remarked, "You must have a lot on your mind." I don't, but a little is a lot for me, which is fine--but an actual lot would be more than a lot and not really a fair expectation.
Disability adds up. That's the first thing. People don't need to be exotic cow fetus collectors for it to be true, though my lack of cow fetuses used to really wear on my soul.
to be continued
I have a teacher (a mostly well intentioned and helpful teacher) who used to keep going on about how I was the same as other people and he would be like "X had trouble with communicating in this instance (because he was talking about something new for him and complicated). You had trouble communicating in this instance (because of sensory issues). Therefore it's the same!"
ReplyDeleteNo, it's not the same. But I don't think "normal" people have to worry about this. If they can't talk because they got a cold and their throat hurts no one says that's like trying to talk about theoretical physics for the first time (and one person can have both problems even at the same time). So rather than playing into anything I think you're pointing out another way we're treated differently- by people reacting to our differences in ways they wouldn't react to other people's differences, including trying to make them into a more typical difference.
I got to the point where I wanted to say something to the teacher like "You must either think that I believe I'm totally unlike other people or you think I'm ashamed of being different than other people and that saying I'm like them will make me feel better. But neither are true."
Of course I'd never manage to actually say something like that- there are too many bits and pieces for me to hold in my head at once. But he hasn't done it for a while, anyway.
Amazing post. I am muchly looking forward to the rest.
ReplyDeleteYou've identified the central conundrum of explaining autism/developmental disability. We really are just human like everybody else...but we experience difficulties that, when added up, are quite different from what non-disabled people experience. It's really hard to explain this to most people. Hence the exotification that you mention.
And LOL, cow fetuses.
And again, you did a really good job of explaining ASD-related disabilities in a way that isn't often talked about. I hate how the focus is always social skills social skills social skills weird behavior repetitive behavior when that's not the issue for me, at all. The issue is that getting through the day tires me out so much that I need to nap when I get home and can't do things like cook a nutritional meal, do laundry, clean up after myself. But people look at me and see that I seem relatively okay socially and that's all they see. When really these issues are much more significant than so-called social skills.
ReplyDeleteGlad to see the new post. It was quiet in here. Too quiet.
ReplyDeleteI was thinking more (while I was asleep?) and one thing I thought about is why autistic people latch onto some of those narratives about us. And that is because it's simply so much closer than anything we've had before. And as someone who "came to autism" relatively later on I definitely had tried so many other ways to make things make sense.
ReplyDeleteI never "realized I was different," but I think I've always been aware I'm quite a lot of differents. I went to school with one person who thought I was trying to be special and purposefully do unusual things. I knew he was wrong but I didn't blame him for thinking that. So "autism" was a way of saying how all those unrelated things are actually related and make sense.
One thing that people like you do, though, is give another narrative for people to try to use, one that's hopefully a bit closer to what things are really like. When using that kind of paradigm it becomes less important to talk about, say, that I read nutrition labels as a child like that's some kind of defining thing about me.
This entry demonstrates why I like this blog so much (even if we disagree on some major issues sometimes). This blog and the asperger community on LJ were the things that made me realize I could be autistic, because they made me realize I didn't have to live up to a stereotype, which I originally didn't even know was a stereotype. I just thought that was how autism was (Spock-like, not needing people, super-smart, etc), so I never though it could possibly apply to me.
ReplyDeleteLike I loved when you talked about your IQ a long while back and admitted that it wasn't anything to write home about, because as it turns out, it's very close to my own. I'm so used to to aspies talking about how brilliant they are or just being being brilliant that I figured I couldn't be aspie without being brilliant. Which I'm very much not.
And yes, it would take me longer than the average person to find stuff for under $15 in a Walgreens that I wanted too. And I often have a hard time getting out of the house in time because it's so hard to 'get it all together.' I have little old lady problems like forgetting whether or not I've washed my face yet in the shower. But I didn't line up toys as a child and it bothered me that I couldn't make friends. And while I tend to interpret language strictly, I can comprehend commonly used metaphors. I'm sure I can pass a Sally/Anne test. You get the picture.
Anyway, I never found an autie-biography I could relate to, but I can relate to your blog.
Pleeeeaaaase let me know when I can link to this, because I HAVE to link to this. It has been too long a day for me to write anything insightful about it, but I love it.
ReplyDeleteYou're awesome.
ReplyDelete