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6 neutralizing Morality Nondirective Counseling of Parents of Children with Intersex Conditions, 2006– among the most significant changes in the standard of care for children born with sex anomalies has been the definitive move away from what Cheryl Chase characterized in the late 1990s as a “concealment-centered model” of care for children with DSD (Chase with Dreger 2000). Before the publication of the Consensus Statement in 2006, physicians cautioned parents against open discussion of a child’s condition with extended family or friends in order to protect the child from potentially harmful comments that could damage her psychosexual development . The risk posed by such comments was understood as a threat to the “concordance ” a child ought to experience between the appearance of her body and her assigned sex. it was for this same reason that parents were also advised not to discuss the child’s condition with the child herself (B. Wilson and reiner 1998, 363). today there is little question that the revised standard requires physicians to honestly and forthrightly discuss with parents the nature of their children’s conditions. The paternalism that prevailed during most of the second half of the twentieth century in the experiences of the families i discussed in chapter 2 is increasingly a thing of the past. Having accepted that ambiguous sex is not the emergency it was taken to be twenty years ago, physicians’ understanding of their role has changed considerably . Prevailing practice does not entirely satisfy the requirements detailed in Bruce Wilson and William reiner’s “Management of intersex: a Shifting Paradigm ” (1998), an essay that marks the inauguration of a new view on the standard of care. Much of Wilson and reiner’s proposal, particularly with regard to the necessity of a mental health practitioner as a member of a treatment team (365), and the participation of the child in the treatment plan as he or she matures (366), has not been realized, although their proposal that parents be included as members of the team (365) could be understood to have been incorporated to some degree. Where in the past, surgery was undertaken by physicians who understood themselves to be acting in response to a crisis and indisputably in the best interests of the child, these same surgeries are performed today because physicians report that this is what parents want (e.g., rebelo et al. 2008, cited in Zeiler and Wickstr öm 2009, 360). Physicians’ justification of surgery as fulfillment of parents’ 133 134 | Making Sense of intersex wishes is not new, though its salience in these decisions appears novel. reflecting the views of specialists in the care of children with intersex working in the 1980s, Suzanne kessler wrote in her 1990 essay “The Medical Construction of gender” that “physicians ‘psychologize’ the issue [of genital correction and reassignment] by talking about the parents’ anxiety and humiliation in being confronted with an anomalous infant . . . [they] talk as though they have no choice but to respond to the parents’ pressure for a resolution of psychological discomfort” (25). a decade later Cheryl Chase recounted a conversation with an endocrinologist who said “he had never in his career seen a good cosmetic result in intersex genital reconstructions , but ‘what can you do? The parents demand it’” (1999, 150). Doctors practicing today would not likely see parents as members of the medical team precisely, but they do see parents, and not themselves, as the primary decision makers when it comes to normalizing interventions. rather than clear advice or the sort of outright prescription we expect in just about every other aspect of medicine, doctors working with parents of children with ambiguous genitalia report an increasing use of a kind of consultation that has come to be called “nondirective counseling.” a nondirective approach involves the provision of information a health-care provider believes to be important for weighing various possible interventions in a given medical situation and what is known of the outcomes without directing the person counseled to make a particular decision. nondirective counseling was first employed in the psychotherapeutic context following the Second World War and was adapted in the late twentieth century in the new field of “genetic counseling” (S. kessler 1997, 166). Under the model of nondirective counseling, decisions regarding treatment rest ultimately with the patient and not with the health-care provider. Because i wanted to understand how treatment decisions regarding care of children with atypical sex anatomies were being made following the 2006 Consensus Statement, i spoke with ten specialists...

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