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People just don’t know what to do with that.”Caitlin, who was diagnosed with a DSD at age 15 (as if adolescence isn’t fraught enough), was old enough to have a say in how the medical establishment treated her, and successfully fought against being subjected to any sort of surgery.
Navigating the issue with her parents was another story.“Her initial emotional reaction was, ‘Oh, did I do something to cause this thing to happen?
But we are not our genitals, any of us, whether our bodies are ‘right’ or not.
Let parents bond with their baby, and don’t create this panic around the idea that your child isn’t right.”This focus on medical care, and building a holistic support network of family and knowledgeable medical professionals, grew out of a movement that has not hesitated to take to the streets.
But one movement intersex advocates are not sure they want to be automatically lumped in with is the gay-rights struggle.
For one thing, that all intersex people are gay is one myth intersex activists hope to dispel.
Conditions like congenital adrenal hyperplasia, an endocrine disorder in which the body has too many (or not enough) sex steroids, which can influence the appearance of genitalia.Every day in hospital maternity wards, intersex babies are born to freaked-out parents who’ve never even heard of such a thing, parents in a highly emotional state who are offered the immediate opportunity to surgically alter their child.Reducing the number of these surgeries is something intersex activists see as fundamental to their cause.“Sometimes the word intersex doesn’t help either,” says Janet, who has counseled confused new parents.The surgery has other lifelong impacts, as well—some research has shown that 20 to 30 percent of these surgeries have resulted in a dramatic loss of sexual sensation.“We’re trying to take a lot of the alarm out of it, just by saying to everybody—even people in the medical community—to slow down and not rush to ‘fix’ something right away,” says Green.“The classic case is for the child to be swooped up and put in neonatal care.