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5 a Question of ethics as/or a Question of Culture The Problem of What Is and What Ought to Be trying to understand and to describe the nature of the ethical violation entailed by the standard of care for the treatment of atypical sex anatomies has been the focus of my analysis thus far. The aim of my project up to this point is much like those of others working in the humanities and social sciences who have criticized the practices associated with this standard. For all the power and cogency of that body of work, and for all the change that has occurred, the standard of care that makes normalization of the bodies of children with DSD the first and best option remains largely intact. The individual and collaborative work that has laid out ethical problems entailed by the standard of care—by Suzanne kessler, anne Fausto-Sterling, Cheryl Chase, and alice Dreger, and then by those working in their wake—has not resulted in making cosmetic normalization a problem of another time. trying to understand how it can be that the revelation of ethical violation has not resulted in change equal to that revelation is the focus of this chapter and the one that follows. already we have a good sense of some of the barriers to recognizing ethical problems that are salient in the standard of care: the apparently unassailable “fact” of sexual difference functions as a ground for social meaning and organization. it may be difficult now to appreciate that as late as the 1990s most physicians did not see themselves as “having a position” on atypical sex anatomies and the standard of care until activism made clear that there was even a possibility, or need, of doing so (S. J. kessler 1998, 119). in Lessons from the Intersexed, kessler writes that the 1996 american academy of Pediatrics’ “Position on intersexuality,” issued in response to the picketing of their annual meeting, was “intended to bolster the medical viewpoint that early genital surgery is necessary for the emotional and cognitive development of intersex/ed children.” That is to say, the statement was an assertion of the noncontroversial status of the standard of care; it reaffirmed the claim made by one specialist in DSD care that medical practice takes place within “the context of what is rather than what should be” (120; original emphasis). But as kessler sees it, the issuing of this statement marked a victory for activists who had, “for the first time, forced a medical group to publicly acknowledge that 110 a Question of ethics as/or a Question of Culture | 111 intersexuality was something about which a view could be taken” (159n62). Perhaps this is the moment at which the “conceptual, moral and practical messes” that hermaphroditism posed in the nineteenth century (Dreger 1996, cited in S. J. kessler 1998, 120) took root in the twentieth. twenty years after the founding of the intersex Society of north america, it appears that one of the biggest messes remains the persistent refusal of physicians to see the ethical problems posed by the standard of care as ethical problems. kessler diagnoses this problem as one owing to physicians’ views that their practices are “constrained by real world demands ,” that is, that they have no choice but to normalize anatomies that disrupt taken-for-granted notions of how things are in the world. But in so doing, physicians refuse to recognize that they are themselves “creators of that world” to which they belong and that their practices serve to reinforce such notions (1998, 120; emphasis added). recognition by specialists who care for children with DSD that their professional work is not only shaped by culture but also functions itself to shape culture may not be easily achieved, because the standard of care for the management of atypical sex anatomies has been formulated not with respect to what we might characterize as the “natural function” of bodies so much as with appearances of bodies, the standards of which are, as physicians acknowledge, determined by one’s location in a particular cultural context. But examination of questions such as these is typically not considered by physicians as part of their work. Most of what are considered to be ethical questions in medicine—by physicians themselves, as well as by bioethicists—do not challenge the goals of medical practice, namely, the “good health” of the individual or population. For the most part, the application of bioethical principles has focused on...

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