Divergence or Disorder? The Politics of Naming Intersex

Women's and Gender Studies Program, 1298 University of Oregon, Eugene, OR 97403 USA.
Perspectives in biology and medicine (Impact Factor: 0.48). 02/2007; 50(4):535-43. DOI: 10.1353/pbm.2007.0054
Source: PubMed


The conditions once known under the umbrella terms intersex and hermaphroditism are now generally being called disorders of sex development in medical settings. The terms might seem synonymous, but in fact there are significant differences with controversial consequences. Hermaphroditism, an older term that can still be found in many medical writings, is vague, demeaning, and sensationalistic, conjuring mythic images of monsters and freaks. In the 1990s, activists advocated intersex to describe discordance between the multiple components of sex anatomy, but that word alienated many parents of affected children, as it suggests a self-conscious alternative gender identity and sexuality. Disorders of sex development also refers to intersex, but it deemphasizes the identity politics and sexual connotations associated with intersex, avoids the degradation associated with hermaphrodite, and instead highlights the underlying genetic or endocrine factors that cause prenatal sex development to take an unusual path. I argue that using disorder is problematic, because it implies medical conditions in need of repair, when some intersex anatomies, though atypical, do not necessarily need surgical or hormonal correction. I advocate a less pathologizing new term, divergence of sex development, that might reduce some of the conflict over nomenclature and satisfy intersex people, their parents, and their doctors.

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    • "These assumptions, drawn largely from the work of John Money and his colleagues, pressure doctors and families to select a normative sex assignment for intersex infants as early as possible, and to modify their bodies accordingly for fear of psychological distress (Money, Hampson, and Hampson 1955, 288-90 and 295-6). These practices persist in spite of the fact that historical and contemporary research provide "no consistent evidence" that having atypical genitalia causes psychological distress, or that any such distress is greater than that caused by the reduced sexual function and pleasure often associated with such medical interventions (Santos and Araujo 2008, 574; see also 3 For discussions regarding the political and social dimensions of this shift, including arguments for and against the retention of intersex as a medical term, see Lee et al. 2006, e488-e500; Diamond 2009, 172; Feder and Karzakis 2008, 33-5; Reis 2007, 536^1. "
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    ABSTRACT: In December 2012, Organisation Intersex International (OII) released an open letter to the United Nations High Commissioner for Human Rights . Delegates from six continents called for an end to human rights abuses of intersex persons, including the subjection of intersex athletes to degrading ‘gender verification’ tests, the continued use of harmful prenatal treatments to prevent intersex conditions, and the subjection of intersex infants and children to medically unnecessary surgeries. These concerns were well founded. Intersex individuals, whose bodies defy easy classification as male or female, pose a problem for states that adhere to a binary model of sex. The majority conflates intersex features with deformity and (dis)ability. This perspective justifies a ‘treatment’ regimen of surgical and hormonal intervention, along with rigid gender socialization, aimed at transforming the intersex person into a normative male-assigned man or female-assigned woman. The United Nations’ Convention on the Rights of People with Disabilities (CRPD) provides a strong foundation from which to challenge these approaches to intersexuality. CRPD embraces a fluid concept of disability with social and environmental dimensions; emphasizes relationships among disability, gender, and age; and offers safeguards in regards to the physical and mental well-being of disabled individuals. Unfortunately, uncritical adherence to the binary model of sex prevents the UN from effectively advocating on behalf of the intersex community. This chapter explores various avenues through which the UN might work more effectively on intersex issues, including (but not limited to) the application of CRPD.
    Disability, Human Rights and the Limits of Humanitarianism, 1 edited by Michael Gill and Cathy J. Schlund-Vials, 06/2014: chapter 10: pages 179-194; Ashgate., ISBN: 9781472420916
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    • "While it is debatable whether xenomelia is an illness of the mind, brain, or a culture-bound syndrome, its inclusion in DSM-V would undoubtedly present a Janusian face to the " transabled " community. On the one hand it might pave the way for legally sanctioned surgery in response to intolerable distress (Ryan, 2009), on the other hand it would contribute to further marginalize a form of bodily self-consciousness that may be viewed as a " non-normative form of embodiment " (Sullivan, in press) rather than an illness (a similar issue is central to disorders of gender identity and sexual development; Reis, 2007; Lawrence, 2009, 2010). A future social neuroscience of bodily self-consciousness will acknowledge that, as mighty as social processes like prosumption might be, they do not invalidate neurological findings that differentiate people with xenomelia from people without. "
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    ABSTRACT: Xenomelia, the "foreign limb syndrome," is characterized by the non-acceptance of one or more of one's own extremities and the resulting desire for elective limb amputation or paralysis. Formerly labeled "body integrity identity disorder" (BIID), the condition was originally considered a psychological or psychiatric disorder, but a brain-centered Zeitgeist and a rapidly growing interest in the neural underpinnings of bodily self-consciousness has shifted the focus toward dysfunctional central nervous system circuits. The present article outlays both mind-based and brain-based views highlighting their shortcomings. We propose that full insight into what should be conceived a "xenomelia spectrum disorder" will require interpretation of individual symptomatology in a social context. A proper social neuroscience of xenomelia respects the functional neuroanatomy of corporeal awareness, but also acknowledges the brain's plasticity in response to an individual's history, which is lived against a cultural background. This integrated view of xenomelia will promote the subfield of consciousness research concerned with the unity of body and self.
    Frontiers in Psychology 04/2013; 4:204. DOI:10.3389/fpsyg.2013.00204 · 2.80 Impact Factor
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    • "From its development as a term in 1917 by the biologist richard Goldschmidt (reis 2007: 536) until the early 1990s, 'intersex' existed as a diagnostic label and epistemological category that circulated only inside the confines of academic bio-medicine; it did not enter into use in conversations between clinicians and their patients or their care-givers. rather, the language of the clinic was— and remains, for the most part, as we shall see—evasive, and spoke of sex development, undifferentiated gonads and incomplete sex: Most doctors believe that an intersexual child is 'really' a boy or a girl. "

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