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This month, Oregon joined 34 other states that mandate routine infant screening for congenital adrenal hyperplasia (CAH), arguably the single most common condition associated with intersexuality, or "ambiguous genitalia." On the surface, this is a good news for children born with CAH, because children with the severe form of CAH experience "salt-losing shock" which at worst lead to death unless they are treated with medication.
However, some intersex activists are concerned that the mandatory early screening would result not just in the early detection and treatment of bona fide metabolic problems, but also in the more aggressive medical interventions to "cure" aspects of CAH that need not be medicalized, under the guise of "saving children." This is particularly important since females with CAH are associated with queerly different physiology (e.g. large clitoris) and relatively high frequency of lesbian, bisexual and trans identity formation.
For example, Save Babies Through Screening, an organization that lobbies for mandated newborn screening programs, states: "prenatal therapy with a synthetic hormone called dexamethasone throughout pregnancy can allow proper development of the external genitalia in female fetuses... [they] are then born with normal external genitalia and do not require corrective surgery." SBTS does not mention any potential risks of using the synthetic hormone throughout pregnancy, nor does it explain how having an "ambiguous genitalia" is a medical problem that "require[s] corrective surgery" on babies. In general, these surgeries do not serve any practical purposes except to prepare children to have "normal" heterosexual intercourse many years down the line.
Given the slew of studies that associate CAH females with typically male-gendered behaviors (playing with boy toys, seeking career over family life, sexual interest in other women, etc.), I fear that those girls found to have not so severe forms of CAH would be subjected to over-medication and increased parental pressure in the society's attempt to prevent not just genuine medical complications but also these gender and sexual transgressions.
Thirty years after homosexuality was officially de-pathologized out of "Diagnostic and Statistical Manual of Mental Disorders" by the American Psychiatric Association, queer bodies--intersex bodies--continue to be regulated by medicine. We ask our queer friends and supporters to embrace newborn screening of CAH even as we stay skeptical as to how it is implemented.
Posted by Emi on Jul 7, 2003