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I do not mean to say that the prospect of a cure for XLH [the genetic
illness] is a bad thing, only that for people like me, it is a complex
one. Certainly, the potential benefits to both individuals and society
are real: less struggle and suffering for individuals and families, espe-
cially those not financially and socially equipped to overcome them,
and perhaps the chance to direct medical attention and limited re-
sources to more life-threatening and debilitating conditions.
But that does not change the fact that to be human often entails find-
ing ways to make what appears a disadvantage a point of strength or
pride. XLH does not shorten life-span. It makes walking difficult, and
we XLHers suffer more aches and pains than most people. But the
main reason a cure is deemed necessary is that we look different. And
this is why I hesitate and wonder: Who would I be without my XLH?
Who would my children be?
I can’t predict where Crispr and the like will lead, but I do know that
ethics and lived experience must be important guides, and that the
very knowledge contained in the disability community is perhaps the
best place to start, for who better to consider such questions than
those of us who have lived with being different? (New York Times, p.
SR6, May 31, 2017).
Works Cited
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