I'm someone who, like davidgillon, has a life-long condition that does not cause pain or illness.
But, even though I have no desire for a cure, I understand the desire to recover an identity which has been lost to Disability -- especially if that previous life was free of pain and exhaustion.
I think (I hope) that both sides of the disability divide can come to an agreement about the harm of the "Cure Narrative" in our society as it exists, now, though, because that narrative makes the disabled individual out to be a burden to society, and that they must therefore be cured (of their outward differences) before they're allowed to participate in society.
Yes, you want a cure. And you deserve a cure (or at least, if you can't get all the way back to your life before your illness, effective treatment that makes life comfortable).
In the meantime, while working on that cure/treatment, you also deserve to have people look you in the eye and accept you as a fully human human being right now, and respect you as an adult who's capable of making her own decisions on which avenues toward cure you wish to pursue.
This is what I call the "Diversity Narrative;" it includes the search for cures as part of its vision. But the "Cure Narrative" does not include Diversity.
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Date: 2016-02-28 12:53 pm (UTC)But, even though I have no desire for a cure, I understand the desire to recover an identity which has been lost to Disability -- especially if that previous life was free of pain and exhaustion.
I think (I hope) that both sides of the disability divide can come to an agreement about the harm of the "Cure Narrative" in our society as it exists, now, though, because that narrative makes the disabled individual out to be a burden to society, and that they must therefore be cured (of their outward differences) before they're allowed to participate in society.
Yes, you want a cure. And you deserve a cure (or at least, if you can't get all the way back to your life before your illness, effective treatment that makes life comfortable).
In the meantime, while working on that cure/treatment, you also deserve to have people look you in the eye and accept you as a fully human human being right now, and respect you as an adult who's capable of making her own decisions on which avenues toward cure you wish to pursue.
This is what I call the "Diversity Narrative;" it includes the search for cures as part of its vision. But the "Cure Narrative" does not include Diversity.