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Normalizing Medicine: Between “Intersexuals” and Individuals with “Disorders of Sex Development”

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Abstract

In this paper, I apply Michel Foucault’s analysis of normalization to the 2006 announcement by the US and European Endocrinological Societies that variations on the term “hermaphrodite” and “intersex” would be replaced by the term, “Disorders of Sex Development” or DSD. I argue that the change should be understood as normalizing in a positive sense; rather than fighting for the demedicalization of conditions that have significant consequences for individuals’ health, this change can promote the transformation of the conceptualization of intersex conditions from “disorders like no other” to “disorders like many others.” Understood in these terms, I conclude, medical attention to those with atypical anatomies should be recast from a preoccupation with “normal appearance” to the concern with human flourishing that is the proper object of medical attention.

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Notes

  1. See Foucault [13, pp. 155–156].

  2. Tuberculosis or “consumption” was historically associated with immigrants and the lower classes in Europe (see e.g., [3] and in US see e.g., [23]).

  3. This term has been in use since the mid-twentieth century, but it has never been a formal diagnostic term. For a historical summary of nomenclature, see [12].

  4. See e.g., [17, 25].

  5. The first official recognition of these abuses was dramatically rendered in a series of the 1999 decisions of the Supreme Court of Colombia (Sentencia SU-337/00; Sentencia T-551/99).

  6. These become more apparent when we focus on what should be routine medical care for adults who must manage sometimes critical metabolic imbalances resulting from Congenital Adrenal Hyperplasia or hypopituitarism. Other conditions might require hormone replacement therapies as a result of the removal of gonads, or because, as is the case with some conditions, gonads are absent, do not function at all, or their function is insufficient to prompt the pubertal changes that many individuals want. For some, hormone therapy might not be regarded as a “choice,” given the serious risks of osteoporosis for those without gonads; others might elect hormone replacement because the function of their gonads is at odds with their gender of assignment. In the latter case, there may be valuable comparisons to be made with those who are transgendered.

  7. For a discussion of “draeptomania,” the mental illness applied to slaves whose diagnostic feature was a penchant to flee his enslavement, see e.g., [30]. In “Imperatives of Normality,” which treats many of the themes I outline here, I discuss in detail the historical confluence of intersex and the making of “the homosexual,” a confluence which remains relevant to the treatment of infants and young children [11]. For an extended discussion of the “invention” of homosexuality, see [22].

  8. Cloacal exstrophy is a rare birth defect affecting 1 in 250,000–400,000 live births, and more common in males then females. This condition is not generally considered an intersex condition, but its treatment shares important features of treatment for intersex conditions. Because of a malformation of the structures of the lower abdomen responsible for elimination and sexual reproduction, surgical repair is necessary for survival, but in chromosomally typical males the standard of care has also included reassignment as female. William Reiner’s important research in this area has raised significant doubts about the standard of care with respect to boys (see e.g., [28]).

  9. See Diamond and Sigmundson’s germinal essay [8] that revealed what would come to be known as “The True Story of John/Joan” [6] as well as research by William Reiner (e.g., [27]. Consonant with Reiner’s research, the Consensus Statement does urge greater caution in matters of sex reassignment which more typically entailed sex reassignment of 46XY boys with micropenis or severe hypospadias, a condition characterized by the appearance of the urinary meatus on the underside or base of the penis rather than the tip.

  10. Perhaps the most well-known claim here is that of the physician Eryximachus in Plato’s Symposium [26], who speaks of health as harmony (Plato 187a–e). Polybus, Hippocrates’ son-in-law, writes in the Nature of Man that “Health is primarily that state in which [its] constituent substances are in the correct proportion to each other, both in strength and quantity, and are well mixed” [24]. In his history of Hippocrates, Jacques Jouanna writes that health “is defined both negatively, by the absence of suffering, and positively, by the balanced mixture of the constitutive elements of man. But insofar as this mixture holds together, the elements do not manifest themselves” [20]. Jouanna sums up the ancient conception of good health as “a precarious and fragile equilibrium” (331), a conception clearly at odds with the later understanding of “the model man.”

  11. The series of measures passed in the 2008 elections in the US preventing gay marriage testify to the multiple “directions” from which power operates according to Foucault (see e.g., [13], pp. 93, 95).

  12. The case of hypothyroidism may be a particularly apt comparison, as many individuals with the condition go undiagnosed despite manifesting (stigmatized) symptoms of depression and obesity which themselves become objects of questionable “treatment.” It is furthermore a disorder that requires lifelong management, and it is notable that most endocrinologists who treat adults receive scant training in management of patients with DSDs.

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Acknowledgments

The invitation to the symposium, “Self, Identities, and Bioethics” sponsored by the Division of Health and Society of Linköping University, prompted the argument that appears here, and I am grateful to the participants of the symposium for their challenging questions and generous support. Special thanks are owed Erik Malmqvist for his detailed remarks, as are readings of Eileen Findlay, Shelley Harshe, Katrina Karkazis, Andrea Tschemplik, and an anonymous reviewer.

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Correspondence to Ellen K. Feder.

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Feder, E.K. Normalizing Medicine: Between “Intersexuals” and Individuals with “Disorders of Sex Development”. Health Care Anal 17, 134–143 (2009). https://doi.org/10.1007/s10728-009-0111-6

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