09 May, 2010

What is severe? (an experiment)

To be honest, my classmate's use of "severely disabled" to describe her sister kind of pisses me off. It reminds me of my feelings about certain autism rhetoric--about autism being The Worst Disability and nonverbal ASD people being "locked inside." I mean, I've been spending time with kids who have multiple disabilities (well in some cases I wonder if it's "they can't talk because of physical disability and we're not creative enough to figure out AAC, so we're going to diagnose them with intellectual disability"--but whatever). Scenes in the story involve my classmate's sister using language communicatively, kicking my classmate, and wandering off and getting lost. Joe can't do any of those things. He can make noises to get people's attention, and he can move around in his wheelchair or trainer--but he usually doesn't, because people often ignore his wishes no matter how clearly he expresses them. Kids like Joe are not troublesome to take care of like kids with ASD can be, because no matter how frustrated Joe gets, he can't kick anyone.

What a horrible way to use the word "severe."

Maybe I'm being nitpicky, because I can see that a possible response is, "Well, your classmate's sister has severe ASD, while Joe is severely physically disabled--the spectrums are different, so it's still okay to call them both severe--just like a severely dyslexic person is much less impaired than A. or Joe."

Okay but she used the term "severely disabled" not "severely autistic." So...wouldn't that mean she's on the severe end of all disabilities?

I don't know. Still nitpicking, I guess.

I'm not trying to set up some sort of "which disability is worse" contest. I mean, I don't know whether Joe is going around thinking, "man, I have the worst life." Probably not. He's a child. There are things going on he is interested in. Sometimes he gets to go outside, sometimes he gets to listen to music.

But I sometimes have a sense that he has mostly given up trying to express himself, and that horrifies me. When I saw my classmate call her sister "severely disabled," I was so offended it surprised me. I felt insulted on Joe's behalf. Which is maybe really weird.

In terms of me: I'm mildly ASD and mildly disabled--but I do sometimes feel pressured to say that I'm not even either of those things at all. And I think that's because I'm not troublesome. I don't do a bunch of obviously odd things. There are just a bunch of tasks most people are expected to do that are extremely difficult and tiring for me and sometimes I feel like I'm falling apart. Sometimes I feel like if I was more obviously odd, it would be easier for me to ask for help.

Would that make me more severely disabled?

5 comments:

  1. I don't think "severity" is an objective, neutral term, especially when talking about the incredibly vast variety of disabilities and neurological states. Its use has a lot to do with a person's individual experiences.

    What I find kind of irritating about your classmate using the word "severe" is that it demonstrates a lack of creativity and, well, sort of that they know little else about their sibling. Granted, I haven't read their story, but seems that your classmate is also focusing on the negative, going into that whole cliche "woe is me and my poor disabled [insert family relation here]" narrative.

    I suppose my brother's disability is "severe" in many ways, but I don't think I've ever really used that word to describe him, and certainly not in my academic writings about him. When applicable I describe his condition in more exact terms; that he has a diagnosis of cerebral palsy, is unable to walk or communicate without AAC, and has a quirky sense of humor and loves roller coasters.

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  2. In terms of me:

    "Sometimes I feel like if I was more obviously odd, it would be easier for me to ask for help."

    I got to the point where I concluded I needed to ask for help, even though I'm acutely conscious of not looking on the outside like somebody who needs it.

    When I went to the Office for Students with Disabilities. The outcome was:

    1. There seemed to be no understanding of a need for at least a little help with issues related to self-care or daily living challenges.

    2. I expressed a desire for connection with other people with ASD's - the idea seemed foreign - there was just a comment about none being interested in socializing.

    3. No help with keeping me on top of medical care management and making sure to stay on top of the bureaucratic stuff necessary to get fully set up there.

    Not only have my efforts to get help proved pretty much useless, the things I've done to try to get help (or at least find a single person at the university who understands the likely needs and circumstances and what sort of questions to ask and so on) have distracted me from my studies, taken up a bunch of time, and left me extremely frustrated.

    I agree about the limits of the word "severity."

    Lately I've been using the image of an equalizer (like on a stereo) to think about the alleged "spectrum." Focusing on ASD's here in particular, it would make more sense (and is still a simple easily visualized image) to have, say, five or ten or whatever different "frequencies" for each identifiable area in which people with ASD's may be impaired. There would then be a sort of profile (which of course for the same person might also change a lot in certain areas from day to day or year to year).

    Does that make sense?

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  3. I don't know, either, to be honest.

    I've used the word to describe my former self because I couldn't think of any other word to use. What other word could I have used? The word was used around me and used to describe me at the time as well.

    But..."severe" what? If you have a diagnosis of "autism" what is considered "severe?" Severe intellectual disability? Not in my case. Severe behavior problems? Yes, in my case.

    Can one part be "severe" and another part not be? What to make of a person with severe behavior problems but that is cognitively able?

    What to make of a person who is not cognitively able but who has no behavior problems and is perfectly compliant?

    Best to be individualized, I guess.

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  4. Yeah Todd, that makes a lot of sense.

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