I'm glad I managed to get something across. I'm never entirely sure whether what I say makes any sense at all. Since I spent most of my life thinking of my immune disorder primarily as an illness, that unlike the flu never seemed to go away, and since I've been treating it aggressively since I was nine, and since it comes close to killing me with disturbing regularity, I never even considered not wanting it gone. On splitting disabilities, if I could split the part of my visual possessing problems that keep me from looking at my cousin, or make maps and graphs incomprehensible to me from the part that lets me zero in on auditory and verbal details, you can bet I'd want it gone, but I'm not sure I want the whole package gone.
Bizarrely enough, I have a perspective on autism I don't think anyone else who doesn't have it can. During the first part of the seizure halo, the part I remember, I act like someone with Aspergers or another form of high functioning autism. Then of course, my condition quickly worsen, but... Since I can say with a certainty that Fish with high functioning autism is a very different person from Fish most of the time, I don't have to imagine the kind of distaste the idea of losing one's autism would cause for an autistic person. The change in self that would involve would be the same as if I were suddenly forced to spend my whole life in the beginning of my seizure halo.
And yes, if you're wondering, I keep having doctors who have seen me before and during my halos ask if I wouldn't mind being studied. I tell them what they can do with that idea with varying levels of politeness.
There's a fantastic portrayal of a disabled character who has a cure available to him but doesn't want to take it for a number of reasons, and his brother, who can't understand this and forces said cure on him in The Demon's Covenant by Sarah Rees Brennan. The author doesn't identify as disabled to my knowledge (though she has pretty severe visual impairment) which just makes the portrayal that much more remarkable. If you like Urban Fantasy, check it and the first book in the series, The Demon's Lexicon out.
Of course the disabilities' effects on the non-disabled people in the person with disabilities' lives is never mentioned in fiction unless it's some sort of "learning experience" about how "people with disabilities are people too!".
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branchandroot
no subject
Date: 2010-06-18 07:57 am (UTC)Bizarrely enough, I have a perspective on autism I don't think anyone else who doesn't have it can. During the first part of the seizure halo, the part I remember, I act like someone with Aspergers or another form of high functioning autism. Then of course, my condition quickly worsen, but... Since I can say with a certainty that Fish with high functioning autism is a very different person from Fish most of the time, I don't have to imagine the kind of distaste the idea of losing one's autism would cause for an autistic person. The change in self that would involve would be the same as if I were suddenly forced to spend my whole life in the beginning of my seizure halo.
And yes, if you're wondering, I keep having doctors who have seen me before and during my halos ask if I wouldn't mind being studied. I tell them what they can do with that idea with varying levels of politeness.
There's a fantastic portrayal of a disabled character who has a cure available to him but doesn't want to take it for a number of reasons, and his brother, who can't understand this and forces said cure on him in The Demon's Covenant by Sarah Rees Brennan. The author doesn't identify as disabled to my knowledge (though she has pretty severe visual impairment) which just makes the portrayal that much more remarkable. If you like Urban Fantasy, check it and the first book in the series, The Demon's Lexicon out.
Of course the disabilities' effects on the non-disabled people in the person with disabilities' lives is never mentioned in fiction unless it's some sort of "learning experience" about how "people with disabilities are people too!".
Not incoherent at all, very lucid, I swear.