I just don't understand what's so hard for people to grasp about the idea that disability and health isn't static, and sometimes, it's worse than others.
That pool scene made my physically sick. I have had too many people attempt potentially lethal assaults on me to prove that I wasn't disabled to feel anything other than horror watching them do that.
And just because I can handle something, doesn't mean I should have to handle it. We're not in line to be martyrs, there's no prize for enduring unneeded pain. The "just try harder" trope hurts people. Yes, I can try harder, but at what cost?
So I can endure far too much noise, spend all my spoons and be unable to hang out with my friends, because I'm too exhausted. Or I can ask for a quiet room as is my ADA accommodation and be fresh as a daisy to sit on the beautiful esplanade with my pals and enjoy the evening.
This, just this. And if it's worth it to handle something one day doesn't mean it will be worth it to handle it the next. I have gotten so much crap for people because I ate something in front of them that I had refused to eat previously because of my allergies. If it's a mild reaction, and it tastes good, or my medication is near, or my allergen load is low, or whatever, maybe I'll do it and take the consequences, and that's nobody's business but mine.
I have an essay that wants to be written that isn't specifically about autism or cognitive disability, but your comment about non-autistic you being a fictional person reminds me of it. It's about the way a lot of parents of children with disabilities who push for cures at the expense of long term treatment and accommodations are in love not only with their child, but an idealized child, their wishes for their child, that the disability is getting in the way of. The problem is, that idealized child isn't real and focusing on them instead of the actual disabled child mean that the child suffers.
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branchandroot
no subject
Date: 2013-05-06 12:43 am (UTC)That pool scene made my physically sick. I have had too many people attempt potentially lethal assaults on me to prove that I wasn't disabled to feel anything other than horror watching them do that.
And just because I can handle something, doesn't mean I should have to handle it. We're not in line to be martyrs, there's no prize for enduring unneeded pain. The "just try harder" trope hurts people. Yes, I can try harder, but at what cost?
So I can endure far too much noise, spend all my spoons and be unable to hang out with my friends, because I'm too exhausted. Or I can ask for a quiet room as is my ADA accommodation and be fresh as a daisy to sit on the beautiful esplanade with my pals and enjoy the evening.
This, just this. And if it's worth it to handle something one day doesn't mean it will be worth it to handle it the next. I have gotten so much crap for people because I ate something in front of them that I had refused to eat previously because of my allergies. If it's a mild reaction, and it tastes good, or my medication is near, or my allergen load is low, or whatever, maybe I'll do it and take the consequences, and that's nobody's business but mine.
I have an essay that wants to be written that isn't specifically about autism or cognitive disability, but your comment about non-autistic you being a fictional person reminds me of it. It's about the way a lot of parents of children with disabilities who push for cures at the expense of long term treatment and accommodations are in love not only with their child, but an idealized child, their wishes for their child, that the disability is getting in the way of. The problem is, that idealized child isn't real and focusing on them instead of the actual disabled child mean that the child suffers.