Sunday, October 4, 2020

"genuinely afraid of where this could lead"

With a new, non-surgical, treatment for dwarfism advancing rapidly, who's to say whether or not it's a "disease" in the first place?  The Guardian takes a look at the medical, ethical, and social issues involved:
"There are, says Gillian Martin, a tutor and chair of the Restricted Growth Association, the British charity that supports people with dwarfism, 'people who are genuinely afraid of where this could lead'. Because about 80% of children with achondroplasia are born to parents without it, some 'adults with dwarfism in the community feel that average-height parents are being an advocate for a disability that doesn’t directly affect them. There is a fear – irrational in my view – that this research is leading the way to eradicate dwarfism.'

This view tends to be stronger in the US, where there is, says Joe Stramondo, a professor of philosophy at San Diego State University and a disability rights activist, 'a more robust dwarf culture and identity. With that kind of cultural context, you’re going to get a very different response to something like this than other areas of the world where people with dwarfism don’t associate with each other as often. We recognise our situation as being one of oppression, and of being subjected to stigma as being the main source of our difficulty in the world. When you have that community, that sounding board, you’re going to have more pushback to a drug like this.' But it’s far from the only view, he says. 'We have people who are very much against the use of the drug, and you have folks who are enthusiastic about it, and say: "Maybe it’s stigma, but it still makes my life harder. I don’t want that for my children." You have a lot of people who are somewhere in between, who are saying: "Let’s wait and see what the drug actually does. Let’s see if it has the capability of dealing with some of these co-morbidities such as sleep apnoea, or spinal stenosis." I think if it were shown to do some of that, there would be lots of people who would be pretty enthusiastic about it.'”

As medical science advances, it's interesting to think about "diseases" that really don't need to be cured.  (Autism as a sign of potential genius rather than an inability to function socially, for example.)  And of course, more conservative societies might even mandate these types of treatment rather than allowing parents and their children to decide if they want to be "fixed."

The future, if we make it past Trump, is going to be complicated as hell.

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