07 May, 2010

On not being real

I'm too tired to write, but I feel uncomfortable because a girl in my writing class just turned in a story about her sister who has severe ASD. We previously had an exchange about ASD that was really uncomfortable for me and I'm dreading reading the story. A cursory glance reveals that it contains the line "she may never fall in love," which is all kinds of offensive to me, but I don't really know what to do or say in the workshop next week. I just tend to feel really shitty and fake-disabled in these situations.

A lot of the time I feel like it's not okay for me to be writing this blog or be into these things because I'm not really disabled. Like it's just an accessory for me and for some people this is real.

I try to calm myself by thinking "what if I had CP?" What if I was a walking, talking college student with CP and I had had some stuff to say about it in my writing, and then someone wrote a story about their sister with CP who was nonverbal and quadriplegic? I don't think I would feel like this. I think it's possibly something to do with the social construction of autism, in particular.

Or the idea that the thing that makes my thoughts difficult to organize and express isn't just less of what makes my classmate's sister the way she is. CP is just physical so you couldn't tell a person with mild CP that there is some complex thing about the being of someone with severe CP that they just don't understand. Of course, I don't have CP--maybe people do say things like that and I just don't know it. I assume that severity levels of CP aren't so extremely divided in the cultural messages about CP I've gotten in my life, just because, if they were, that analogy wouldn't actually make me feel like less of a huge faker using a disability as an accessory.

If you are on the mild end of a spectrum disability that isn't autism, I'd be curious to hear if you feel fake-disabled and/or like you don't have the right to talk about things. (Mild is relative obviously: the comments on this post prove that even a severely disabled person can be told they don't know what the Real Disability is like.)


  1. Oh god, what a stressful situation! It sounds like the story is buying into all of those ideas of "alas my child/sibling will never [do thing I everyone should do]".

    You mentioned how you were thinking about experimenting with alternative forms of communication -- maybe this would be a good time? You could write out your reaction to the story and print it out and pass it around instead of having to speak it out loud. Or you could type on a computer instead of talking, and then turn it around so people could see?

    I mean, obvioulsy the situation you were thinking about doing this in would be a lot more comfortable (among other ASD people, talking about ASD issues)than this one (having a stressful conversation with people who might not know a lot about ASD). So maybe my suggestions are kind of stupid.

    I mean, it's obvious to most ASD self-advocates at this point that being related to someone with ASD doesn't give one disability awareness. The stuff you talk about your mom saying really proves that. There's this idea, culturally, that you can't criticize what someone who's related to a disabled person says because they are suffering -- but doesn't that really just come from the idea that disability is tragic and it's tragic to live with a disabled person?

    I'm not making a great deal of sense here, but I wish you luck. Let me know how the discussion goes.

  2. I mean, it's SD. You know her. It's a real person. It doesn't feel appropriate. Also I haven't even read the story so I don't want to assume it's offensive. But I just feel nervous.

    I think I'm projecting and imagining she hates me or something. I just feel really awkward because I already wrote an Autism Story in the class and it's like...so everyone knows about me, and I guess I feel weird because I feel like I'm expected to say something...I don't know. I'm kind of drunk. And maybe I'm being narcissistic and imagining that people are more aware of me than they really are.

  3. Sorry I think I missed something there. What doesn't feel appropriate?

  4. It just feels like it would be really awkward to say in class and it seems like it would seem like I'm trying to take over her workshop and make it about myself and my political agenda.

  5. Oh, okay. I guess this kind of workshop is supposed to be more about improving someone's writing.

    I dunno, in one of my classes last semester we read a book where the main character had a disabled brother and was saying things like "I know he would choose a cure if he could" even though he never expressed that thought to her. It really bothered me but it wasn't the focus of our discussion on the book, so I felt awkward bringing it up. But I also felt awkward about not bringing it up, like I felt guilty for not challenging it. So I can see how you're in a bad situation is what I'm attempting to say.

  6. what I'm planning on saying (it turns out only one section of her story is about her sister): "just so you know a lot of people with disabilities find the construction 'so and so will never do such and such' to be cliched and maudlin. The idea is, the reader can already tell from context the kind of things that A. wouldn't be able to do. Listing the 'normal' life experiences she won't be able to have seems unnecessary, and seems like you're trying to compare her to some imaginary version of her without ASD. I don't know what your intended audience for this piece is, but if it includes PWD, you might want to keep stuff like that in mind.
    This kind of narrative makes me uncomfortable for personal reasons and I don't think I can evaluate it objectively, so I'm going to skip commenting on this section and just comment on the others."
    (except not as bitchy as that)

  7. That all sounds like very appropriate stuff to say. I don't think it sounds bitchy.

    I was at a party tonight with a bunch of people who I am related to but have never met, and I overheard two of them talking about nursing homes, and how it's so sad when people become wheelchair users. One of them was talking about a woman she knew who became paraplegic, and how tragic it was because she could never again ride a horse or parachute or hike or all that stuff she used to do. I really wanted to say something, but because I didn't know them and had just met them, I didn't. It made me think of this dilemma of yours though.