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Born with disorders of sex development (DSDs), many had intermediate genitalia — an overlarge clitoris, an undersized penis or features of both sexes. And the decision of whether a child would be left with male or female genitalia was often made not on scientific evidence, says Vilain, but on practicality: an oft-repeated, if insensitive, line has it that “it's easier to dig a hole than build a pole”. “I was fascinated and shocked by how the medical team was making decisions.” Vilain has spent the better part of his career studying the ambiguities of sex.
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He is also a medical adviser for the International Olympic Committee, which about five years ago set controversial rules by which intersex individuals are allowed to compete in women's categories.
Our Mission: The Intersex Society of North America (ISNA) is devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.
There are no mechanisms are in place to foster implementation nor to evaluate to what extent these changes improve health care experiences and outcomes for persons and families affected by ’s dilemma: we ﬁnally have consensus on improvements to care for which we have advocated for so long, but we lack a consistent way to implement, monitor, and evaluate them.
At present, the new standard of care exists as little more than ideals on paper, thus falling short of its aim to improve the lives of people with is considerably hamstrung in being able to fulﬁll this role.