- Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine by Ellen Feder
In the 21st century, why is the birth of a child with atypical sex still considered a social emergency? Moreover, why does this social emergency continue to be treated as a medical problem? Given the powerful testimony of intersex scholars and activists over the past several decades about the significant harms perpetrated by the standard medical treatments, including genital surgery on infants, what accounts for the persistence of these practices?
Ellen Feder’s important and impressively researched book, Making Sense of Intersex, makes a substantial contribution to these questions. By wading into the discussion on intersex treatment, Feder is well aware that she is entering a strange combination of well-worn territory and stubborn silences. Citing a litany of feminist theorists who have deployed intersex as a powerful example of the social construction of biological sex, Feder establishes early in the text that she seeks to recast the problem “not as one concerned with gender and genitalia, but as an ethical problem—that is to say, a problem located with those who find intolerable the variation that those with atypical sex anatomies embody” (2–3, emphasis added). By foregrounding ethics, in other words, Feder seeks to avoid a single-minded focus on sexual difference that she believes has dominated the conversation [End Page E-34] for too long. She takes inspiration on this front from a number of scholars and activists, such as Cheryl Chase and Suzanne Kessler, who have worked to resituate the “problem” of intersex as one of “stigma and trauma, not gender” (Chase quoted in Feder, 66).
As Feder develops her argument that the treatment of intersex should be understood as an ethical problem, she expects that the field of bioethics will be an obvious resource. To the contrary, however—and as detailed in a short history of bioethics in the opening pages of this book—she was surprised by the silence on the subject not only from philosophers in general but also from bioethicists in particular. Linking this silence to the ‘confinement’ of philosophy in the wake of the McCarthy era detailed by John McCumber in Time in the Ditch, Feder articulates both the promise of bioethics—as an applied field of philosophy that tackles concrete problems—and the limits of bioethics, limits that become especially apparent when bioethicists cast their primary aim as that of serving medical practitioners, or as “providing answers to questions that they [philosophers] are not permitted to pose themselves” (9).
In working to reinvigorate the philosophical creativity of bioethics, Feder argues that we should face the failures of conventional ethical frameworks (e.g. rights, autonomy, informed consent, enumeration of harms) to account for the prevailing models of decision-making and avail ourselves of different tools. In developing this toolbox, Making Sense of Intersex is distinctive (in the bioethics literature on medical issues and in the feminist literature on intersex) for at least three reasons. First, Feder draws on philosophy from the continental tradition. Many of these thinkers, such as Pierre Bourdieu (chapter 2), Friedrich Nietzsche and Sigmund Freud (chapter 3), and Maurice Merleau-Ponty (chapter 4), are not often present in discussions of medical ethics. Second, while Making Sense of Intersex is clearly indebted to the critiques of the medicalization put forward by intersex and feminist scholars and activists, Feder complicates a purely social reading of intersex conditions throughout the text. While she acknowledges that “the case [for demedicalization] is undeniably convincing […] there is an equally compelling case that some of the conditions with which genital variation are associated bring genuine health challenges that require not less, but substantially more, medical attention than has been afforded them” (21). Finally, her work relies on empirical research. “Talking to people had played no significant role in my training in philosophy” (11), Feder amusingly writes, and yet the lack of academic engagement with many of the topics driving her interest—such [End Page E-35] as the relationships between children, parents, and physicians, as well as the changing standard of care—led...