Like a lot of social questions, attitudes toward disability remediation only start getting really nasty when they intersect with people’s identities—which is probably what writers are getting at much of the time when they talk about “disability culture”, although I think that’s a less than ideal choice of words since cultures intersect only imperfectly with self-image. Now, at this point I could link to “Keep Your Identity Small” and wash my hands of the problem. Certainly that’s the advice I’d give to anyone in the unlikely position of making conscious choices about their future relationship with disability. But that’s a dodge, and there’s enough situations where it’s inadequate that I think the question deserves a real answer.
I don’t think breaking our response to the identity construction of disability down in medical terms (“they’re sick; it’s our job to cure them”) is going to get us anywhere: the social architecture of medicine makes it poorly suited to navigating scenarios which the patient wouldn’t consider dysfunctional. Let’s consider our response in sociological terms instead: it has medical consequences when alternatives are or may become available, but people take on all sorts of identities with quality-of-life implications.
Looked at through that lens, choosing to accept a disability when remedial measures are available becomes largely equivalent to e.g. taking a vow of silence. Public choice issues make this trickier (enough so that I could probably devote a fairly long post to them), but if we leave those out it looks to be well within the scope of social variation: a little weird, sure, but not obviously destructive and perhaps handy on a society-wide level if problems come up where isomorphic coping skills would be useful.
But then there’s the issue of taking steps to spread disability identification: patients opting out of gene therapies which could resolve the disability for their children, campaigning against curative technologies, and so forth. To a certain extent this can be considered self-defensive, and it’s probably best to keep the distinction in mind. But insofar as it involves nonconsensual withholding of potential cures, it seems equivalent to (to borrow an Iain M. Banks phrase) aggressive hegemonization, and strikes me as rude. Identities do not have a right to exist independent of their carriers’ preferences, and attempts to render those preferences irrelevant should probably be discouraged.
The analogies to augmentive transhumanism are all fairly straightforward.
Like a lot of social questions, attitudes toward disability remediation only start getting really nasty when they intersect with people’s identities—which is probably what writers are getting at much of the time when they talk about “disability culture”, although I think that’s a less than ideal choice of words since cultures intersect only imperfectly with self-image. Now, at this point I could link to “Keep Your Identity Small” and wash my hands of the problem. Certainly that’s the advice I’d give to anyone in the unlikely position of making conscious choices about their future relationship with disability. But that’s a dodge, and there’s enough situations where it’s inadequate that I think the question deserves a real answer.
I don’t think breaking our response to the identity construction of disability down in medical terms (“they’re sick; it’s our job to cure them”) is going to get us anywhere: the social architecture of medicine makes it poorly suited to navigating scenarios which the patient wouldn’t consider dysfunctional. Let’s consider our response in sociological terms instead: it has medical consequences when alternatives are or may become available, but people take on all sorts of identities with quality-of-life implications.
Looked at through that lens, choosing to accept a disability when remedial measures are available becomes largely equivalent to e.g. taking a vow of silence. Public choice issues make this trickier (enough so that I could probably devote a fairly long post to them), but if we leave those out it looks to be well within the scope of social variation: a little weird, sure, but not obviously destructive and perhaps handy on a society-wide level if problems come up where isomorphic coping skills would be useful.
But then there’s the issue of taking steps to spread disability identification: patients opting out of gene therapies which could resolve the disability for their children, campaigning against curative technologies, and so forth. To a certain extent this can be considered self-defensive, and it’s probably best to keep the distinction in mind. But insofar as it involves nonconsensual withholding of potential cures, it seems equivalent to (to borrow an Iain M. Banks phrase) aggressive hegemonization, and strikes me as rude. Identities do not have a right to exist independent of their carriers’ preferences, and attempts to render those preferences irrelevant should probably be discouraged.
The analogies to augmentive transhumanism are all fairly straightforward.