31 July, 2010

Some screwing around about person-first language (written June 18 to July 30)

I know these posts are probably boring to everyone but me, especially because I never come to any real conclusion. I just like thinking about language more than I like doing almost anything else. In practice, I generally use person-first language, but that's for various reasons not worth talking about (especially because I talk about those reasons a lot anyway). However, I was thinking a lot and I feel like, at least when I look at it in theory, person-first language is kind of painful for someone like me.

Just kidding, I am going to talk about what I do in practice. Being called "autistic" or calling other people "autistic" makes me uncomfortable and so I don't do it, but that's very specific stuff about the word autistic and how it feeds into cultural connotations about ASD that make me incredibly upset. However, although I guess I don't have much occasion to identify myself as just disabled (and when I do it's to pretentious social justice people, so I throw the term PWD around because they like acronyms) there is this really nice place in my head that goes "I'm a disabled person, I'm a disabled person" and it's seriously just one of the nicest-feeling phrases in the world. I like the word disabled, it looks soft, and it fits me neatly, and I enjoy the part of me that just feels like "a disabled person" and not "autistic" or "a person with autism" which isn't that great either, or "a person with a disability" or "a person living with a disability"--like how far away from me can you get it, is my question? "Amanda is a human being who is currently at this moment in time making her way around the planet with, um, a disability." Oh boy! Poor Amanda!

Poor Amanda indeed. I certainly feel like Poor Amanda at school sometimes because it hits all my energy drains--planning tasks/transitioning/starting tasks, looking normal, and putting enunciation and loudness (two things that are somewhat painful) together with lots of words that are appropriate in style for what's going on. Also recently there have been really good times like taking a class where the professor insults people with your disability, and the TA gives examples of what people with your disability are like (I know this doesn't sound bad but it makes me feel sick), and then in your other class someone writes a story about their sibling with your disability basically acting like their sibling is some sort of tornado instead of a twelve-year-old person. All of this stuff made me spend last term with an ever-expanding belief that I had schizophrenia, anemia, multiple sclerosis, and lots of other illnesses that I would look up on Wikipedia--I had gotten to a point of being extremely exhausted all the time and having such an immense amount of trouble making decisions and tolerating small amounts of stress that it was hard for me to do anything.


Sometimes I have a running mental conversation with myself about how to describe autism to people if I have to disclose. A recent one goes: "Autism is like being born with a giant pile of shit on your face, and at first you don't realize it's there, but eventually you do and you start washing it off, but even after you wash it off you can still smell it and other people can smell it too but they don't always know what it is they're smelling but they know it's bad."


My current job is the opposite because it avoids all my energy drains. I am working at a summer camp where we have to follow a strict schedule. I am never just drifting in time. All the campers have developmental disabilities and our focus is on relating and engaging with them, not on looking normal. Talking in a complicated-sounding way is not seen as valuable at all.


It's funny because what I don't like about the way some professionals and laypeople use the term "autistic children" (or autistic something elses, but mostly children) is that they act like autism is about a preference and a decision to disengage from other people because you aren't interested. Or to be violent or something because you don't care about other people's feelings or are selfish or mean. However, what I'm saying about "person with a disability" is actually a somewhat analogous characterization--because saying that people with autism aren't interested in other people, and that's why they don't look at them, implies that everyone can look at other people if they just work hard enough, and so on and so forth. It places the entire burden of managing autism on the person with autism. You can be a good autistic person--that is, a person with autism, who keeps their autism in a place where no one can see it. Or you can be a bad person, which is to say an autistic person, who is selfish and disruptive because they express their feelings, don't hide stimming, don't force eye contact, and so on.


In my creepy disability studies class that I dropped, someone did say something sort of good--they said something about the burden that disabled people get saddled with to educate other people about disability, and the unfairness of it when the disabled person has a disability that makes it impossible for them to fulfill that role.

That resonates. Sometimes I have the spoons to be a person with autism--a person who has autism like I have a backpack or a phone. I can leave my backpack in my room when I go to the mailbox. Some people see me walking around in the winter when I can carry my wallet and keys in my jacket pocket, and they don't know that I'm a person with a backpack. And my greatest problem, I guess, is just that if I say "I have a backpack" people might not believe me, because I don't look like someone who has a backpack.

If I am visibly disabled, or even do things that might not even be read as markers of disability but I know that's what they are, or if I just straight out mention it, I fear becoming disabled/autistic instead of A Person With because the truth is people do perceive you as lesser if your disability can't be contained. I have a feeling that they will become ethically better than me in all situations thanks to PAE, or just that they will always think they're going over my head. But I can't avoid that forever. I can't really be A Person With--A Person Who Has--because having something implies ownership and competence and sometimes those aren't things that I have in great enough supply that I can just treat autism like a possession. Sometimes I drop my thermos of autism and spill it all over myself.


In my current environment, the disability has been moved to the front. I'm a disabled person. Instead of a regular person handling something, I'm just a different kind of person. It's funny because I feel that at this job, my disability is an asset. I certainly don't understand everything that all other disabled people feel and experience, but I am pretty familiar with sensory issues, trouble communicating and making decisions, not looking at people, being under- or over-affectionate, and so on. It's not something I have to read about, I can just relate to it and I respect it easily. So right now it's nice to be a disabled person, but when I have to send the disability away from myself it turns into shit.

No comments:

Post a Comment