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II. Intimate Violations: Intersex and the Ethics of Bodily Integrity

When Cheryl Chase founded the Intersex Society of North America (ISNA) in 1993 by publishing a letter in the journal Sciences inviting people with intersex anatomies to contact her, one of her key criticisms of unwanted cosmetic genital surgery was that it has been ‘immensely destructive of . . . one’s sense of bodily integrity’ (p. 3). Chase’s letter is viscerally persuasive, I think: it would seem to be common sense that the destruction of bodily integrity is ethically objectionable. But I will argue that to ground a critique of medicine in the injurious experience of cosmetic genital surgery is to assume an alignment between two sets of oppositions – the bodily opposition between interior and exterior, and the ethical opposition between right and wrong. I don’t think these oppositions hold, and consequently I will suggest that their alignment doesn’t hold either. To explain why many critics of traditional intersex treatment regard the maintenance of bodily integrity as the ethical measure of medicine, I want to begin with the testimony of intersex activist and former ISNA secretary Esther Morris. ‘I feel invaded by pain and health concerns that never were addressed during treatment’, writes Morris, who received surgery at age thirteen for the congenital absence of a vagina (2004: 27). In a patient narrative of the kind valorized in recent years by medical ethicists such as Arthur W. Frank (1995), Morris is recording the negative effects on her personhood of the childhood genital surgery that intersex treatment reformists criticize. ‘I feel invaded by the ignorance of experts’, she continues; ‘I feel invaded by depression that takes too long to wane’ (2004: 27). It is clear that Morris, in concord with a general emphasis by ISNA on patient experience, seeks to reverse the usual power relations between doctors and patients by calling the ‘experts’ ignorant. Faced further by the fact that ‘quality of life and emotional support were never part of my care’, Morris berates the medicalization of intersex (2004: 25). Such medicalization has caused despair and discomfort, her testimony makes clear. The debilitating effects of medicalization lead Morris to privilege her lived experience as an individual with intersex over the medical approach to its treatment: the latter, she complains, ‘is focused on correcting intersex variations, not