Sunday, January 30, 2011

The whole thing about being/thinking of myself as an "-ic"...

When I hear people use words like "hydrocephalic" or "epileptic" as a noun, it makes my skin crawl. This is a means of labeling that, to me, is incredibly self-limiting. Maybe I feel that way because I haven't had serious problems with either condition, but it just seems that it means that's all we are. I am a wife, mother, daughter, sister, friend, and "amateur" advocate. In terms of its overall impact on my life, it actually ranks fairly low. I do have ongoing effects that most others do--memory, concentration, and other common deficits--but I have so much to keep me busy that thinking of myself as defined by my conditions drags me down and leaves me with no energy to deal with everything I have to, so there's no time for it, plain and simple. How much better would we all feel if we looked at it that way?

I have noticed that I say my son is "autistic," and of course, that sounds hypocritical, but I was very uncomfortable with it for a long time and actually refused to say it until I was actually corrected by some adults at an autism conference. They explained that there is no way to separate who they are from their autism, and therefore, it is completely okay, and even preferable to them, to be referred to as autistic. I would eventually come to see that in the way they talked and thought. There actually is an "autistic" way of thinking. It's very literal and "black and white," unlike my thinking is with hydro and epilepsy, which is much broader and more "neurotypical."

UGH...there's another word I grapple with: "neurotypical." To some, it means "normal." To others, it means "not ______ (whatever they're talking about)," but it has mostly come to mean, in my online roamings, "not autistic."

Okay, so I'm not autistic, but "neurotypical"?? Surely, you jest!!  I think not! Hydro comes with its own idiosyncratic way of thinking, to some degree, but not in as limited a way as autism. This is especially true with Nonverbal Learning Disorder, which is a very common effect of hydro, and of which I have some slight shades. The difference is that I know that not everyone thinks the way I do, and yeah, I know it's weird. Most autistic adults have told me that they don't have that ability.

So, if we have more prominent NLD, are we more able to see ourselves as "hydrocephalics"? I'm interested in any and all input. :)

1 comment:

  1. I hide having a brain tumor through school because I did not want to be labeled by kids plus kids can be really mean. It you notice I never use these words in my blog I hate and I mean HATE them myself. I try to reffer to my friends as hydro peeps to make it not sound as clinical. Plus it kinda is a warm fuzzy term to me instead of sounding like we have a disease.

    BTW had a close friend with a brain tumor ask me if hydro was a disease. I can't blog on it anytime soon but thought you might want to...

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