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psychosocial well-being and quality of life, and that interventions such as genital surgery ameliorate rather than cause suffering. Instead, critics advocate non-medical ways to help individuals and families adjust, such as, psychosocial and peer support that leave irreversible decisions about bodily intervention to the child when he or she is capable of participating in the decision. Socio-cultural perspectives point to how a focus on hormonal and surgical “fixes” for what might otherwise be viewed as human variation elides the ways in which intersex can be understood as much as a socio-cultural phenomenon as a medical one.

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Intersex is a term whose meaning and use is contested, but generally it refers to bodies that possess a combination of what are commonly considered male and female sex traits (genital, gonadal, or chromosomal, for example). For decades, the medical profession has assumed authority over intersexuality viewing it primarily as a physical abnormality requiring medical interventions. Although there are medical issues associated with some intersex traits, standard medical practice has been to implement interventions aimed at fixing so-called sex ambiguity. Twentieth-century developments in surgery and endocrinology, for example, have provided clinicians with tools to intervene in an attempt to give individuals with intersex traits more normative and concordant markers of sex via genital surgery, gonadal surgery, and hormonal interventions (Kessler 1990). Those advocating such interventions fear the suffering and ostracism children with intersex traits may face throughout their lives. They frame these interventions as benevolent acts uniquely capable of reducing the stigma and shame associated with having a sex atypical body. Others have pointed out, however, that these preemptive interventions are predicated on the assumptions that atypical sex traits per se are strongly correlated with poor

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Stanford University, United States University of Nevada, Las Vegas, United States

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Katrina Karkazis1 and Georgiann Davis2

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Intersex: socio-cultural perspectives

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Socio-cultural perspectives on intersex medical management In the 1990s, people with intersex traits began offering perspectives about intersexuality other than biomedical. Drawing on gender theory and critiques of medicalization, for example, as well as intersex adults’ criticisms of medical care, anthropologists, sociologists, and others in the humanities and social sciences also challenged medical responses to intersexuality. At their core, socio-cultural perspectives maintain that atypical

The International Encyclopedia of Human Sexuality, First Edition. Edited by Patricia Whelehan and Anne Bolin. © 2015 John Wiley & Sons, Ltd. Published 2015 by John Wiley & Sons, Ltd.

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example, when a child is born with a phallus that is considered too small for vaginal penetration, physicians have made a female sex assignment owing to an assumption that a penis of sufficient size is required to sexually function as a man. Similarly, reducing what is perceived as a toolarge clitoris or enlarging what is deemed a tooshort vagina has seemed appropriate although for different reasons: whereas the former is viewed as too similar to a penis to be left on a female, the latter is deemed necessary for sexual coupling (with males via penile-vaginal intercourse). As another example, girls born with testes often undergo gonadectomy early in childhood to make their bodies more female-typical. In so doing, doctors have often unwittingly sterilized these girls because they have failed to consider that their testes may allow them to reproduce. Socio-cultural perspectives have challenged the notion that sex is naturally dimorphic, that genitals are the essential sign of gender, that gender and sexuality derive from biology, and that physical sex traits, gender identity, and gender roles in an individual should align to either masculine or feminine norms—all of which were implicit in treatment recommendations.

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sex need not be construed as a medical problem: rather than change bodies to fit social norms, social norms should shift to accommodate sex and gender variance. Scholars and individuals with intersex traits have pointed out that many, if not most, instances of atypical genitalia do not require medical intervention. As a result, these procedures are especially problematic because they are irreversible, are performed for cosmetic reasons and when a child is too young to consent, and can cause, rather than ameliorate, feelings of shame, stigma, and abnormality (Dreger 1999; Preves 2003; Karkazis 2008). For example, adults with intersex traits who underwent genital surgery as children often express feelings of grave physical and emotional harm including severe struggles in intimate relationships. Some also feel violated by the medical community and betrayed by parents who consented to their medical interventions, however well-meaning these decisions might have been. Instead of approaching intersexuality from a biomedical framework, the socio-cultural perspective asks: Why are sexatypical bodies construed as abnormal and in need of treatment? Whom or what does this framework serve? Should medical professionals be allowed to make cosmetic interventions at all? Answers to these questions are complex, yet at their core, lies a critique of the authority medicine has over framing intersex as a medical, rather than a social, problem.

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Sex, gender, and sexuality

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A central contribution of socio-cultural perspectives on intersex has been to problematize the linkages between sex, gender, and sexuality—and the implicit presumption of heterosexuality in the medical treatment paradigm—noting that the relationships between these phenomena are neither innate nor natural (Kessler 1990). The biomedical treatment paradigm has long presumed a connection between being male or female and the “correct” form of erotic behavior, namely penilevaginal intercourse between a man and a woman. As a consequence, decisions about sex assignment and genital surgery have drawn on normative cultural frameworks about sex, gender, and sexuality—and their relationships—to produce norm-abiding gendered subjects. For

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The beginnings of intersex activism Angry about medical interventions that they felt had caused grave pain and harm individuals with intersex traits organized to change medical protocols in the 1990s (Chase 1998). The expansion of the Internet accelerated this development by facilitating the ability to share experiences and organize collective action against the prevailing treatment paradigm (Preves 2003, 2004). By the mid-1990s, intersex activists in the United States and elsewhere were organizing public protests at medical association meetings and garnering a surprising amount of sympathetic media coverage (e.g., Chase 1998). Activists articulated the movement’s goals forcefully in protests and the media: namely, to end the shame, secrecy, and stigma associated with intersexuality; to end cosmetic genital surgery without the child’s consent; to encourage full disclosure and to ensure psychosocial support for individuals and families especially before making irreversible medical decisions.

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The medical community rebuffed early critiques of medicalization and medical intervention, igniting a struggle over what intersexuality is and how it should be treated, and leaving the longstanding treatment paradigm largely unchanged (Holmes 2008; Karkazis 2008). In 2000, after nearly a decade of socio-cultural critiques and activist protests, the field was in a deep crisis. Providing a watershed moment in legitimizing the views and experiences of individuals with intersex traits, Cheryl Chase, a founder of the intersex rights movement, was invited to deliver a plenary address to the thennamed Lawson Wilkins Pediatric Endocrine Society, a group against which intersex activists had once protested (Karkazis 2008). During that same year, the American Academy of Pediatrics issued an official statement on the medical management of intersex that began to address activists’ criticisms of care (Committee on Genetics 2000). Although this statement encouraged open and honest disclosure with parents about their child’s diagnosis and questioned the necessity of early surgery on atypical genitalia, surgical modification of the child’s genitalia was still recommended in many cases (e.g., to reduce the size of a girl’s clitoris). Moreover, a female’s fertility and an individual’s capacity for penile-vaginal intercourse remained key considerations in sex assignment and “treatment” decisions. What’s more, the recommendations failed to address key criticisms such as avoiding medically unnecessary surgery, promoting disclosure, and improving access to psychosocial care and support. In 2006, international medical experts as well as two activists met to propose what would become the most substantive shift in medical protocols for intersexuality since they were first implemented in the 1950s (see Lee et al. 2006). This marked the first time in the United States that medical professionals and advocacy groups worked together to reconsider medical care for those born with intersex traits. The consensus statement that emerged from the meeting recommended several significant changes to medical care that demonstrated a marked shift in thinking about treatment including: integrating psychosocial support and professional mental health care

for persons with intersex traits and their families; advocating honest and complete disclosure with patients and their families; considering the potential for fertility for all infants (not just those female assigned); and curtailing genital examinations and medical photography. Evincing conceptual changes regarding gender and sexuality, the document stated, for example, that homosexuality should not be construed as an indication of incorrect sex assignment and that a person’s wish to change gender should be supported. After what had been a decade of debate over genital surgery, the authors of the consensus statement advised a more cautious approach to early genital surgery, including no vaginoplasty in infants (and no vaginal dilation before puberty) and clitoral surgery only in “severe” cases. While the authors acknowledged that there are minimal systematic surgical outcome data about genital surgery (whether on cosmetic appearance or sexual function), that orgasmic function may be harmed by surgery, and that there is little support for the belief widely held among physicians that surgery performed in the first year of life relieves parental distress about atypical genitals, surgical intervention was still presented as a viable option in some instances, specifically for girls with “severe virilization” (Lee et al. 2006:491). Nevertheless, the authors provided no rationale for why, given the problems they noted, it would still be advisable or acceptable to consider surgery for girls with enlarged clitorises. Genital surgery remains one of the most contested aspects of medical care for people with intersex traits. The consensus statement also formally promoted the new nomenclature of “disorders of sex development” (DSD), which the authors justified because “terms such as intersex, pseudohermaphroditism, hermaphroditism, sex reversal, and gender-based, diagnostic labels are particularly controversial” and “confusing to practitioners and parents alike” (Lee et al. 2006:488). Although the term DSD has replaced intersex in medical discussions and in the medical literature (Davis 2011), it continues to be debated in the intersex community. On the one hand, some welcome DSD language because of stigma around the term intersex, and physicians reluctance to use it with parents and patients, which has thwarted full disclosure and open discussion (Dreger and Herndon 2009). On the other hand, others resist

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Medical responses to socio-cultural critiques and intersex activism

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are usually exposed only to medical approaches to intersexuality and the related interventions. In situations where diverse perspectives on intersexuality are presented, the medical approach usually prevails because of medicine’s authority over intersex specifically and matters of the body more generally. This has the potential to jeopardize the well-being of individuals with intersex traits and their families, as it fails to provide them with a full repertoire of tools for learning about, responding to, and living with intersexuality.

SEE ALSO: Androgen Insensitivity Syndrome;

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DSD feeling it labels them as having a “disorder,” which they find pathologizing and dehumanizing (Holmes 2009). They prefer intersex, a term activists had reclaimed as an empowering identity component. Some scholars have argued the nomenclature shift has allowed medicine to reassert its authority over intersexuality, and in the process, justify the continuation of cosmetic surgical intervention at a moment in history where intersex activism and socio-cultural critiques were beginning to challenge the biomedical approach to intersex (Davis 2011).

References

Chase, Cheryl. 1998. “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism.” GLQ: A Journal of Lesbian and Gay Studies, 4(2): 189–211. doi:10.1215/10642684-4-2-189. Committee on Genetics: Section on Endocrinology and Section on Urology. 2000. “Evaluation of the Newborn with Developmental Anomalies of the External Genitalia.” Pediatrics, 106: 138–142. doi:10.1542/peds.106.1.138. Davis, Georgiann. 2011. “‘DSD is a Perfectly Fine Term’: Reasserting Medical Authority Through a Shift in Intersex Terminology.” In Sociology of Diagnosis, edited by P. J. McGann and D. J. Hutson, 155–182. Bingley, England: Emerald. Dreger, Alice D., ed. 1999. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group. Dreger, Alice D., and April M. Herndon. 2009. “Progress and Politics in the Intersex Rights Movement: Feminist Theory in Action.” GLQ: A Journal of Lesbian and Gay Studies, 15(2): 199–224. Holmes, Morgan. 2008. Intersex: A Perilous Difference. Selinsgrove, PA: Susquehanna University Press. Holmes, Morgan. ed. 2009. Critical Intersex. Farnham, England: Ashgate Press. Karkazis, Katrina. 2008. Fixing Sex: Intersex, Medical Authority, and Lived Experience. Durham, NC: Duke University Press. Kessler, Suzanne J. 1990. “The Medical Construction of Gender: Case Management of Intersexed Infants.” Signs, 16(1): 3–26. doi:10.1086/494643. Lee, Peter A., P. Christopher, S. Houk, Ahmed Faisal, and Ieuan A. Hughes. 2006. “Consensus Statement on Management of Intersex Disorders.” Pediatrics, 118(2): 488–500. doi:10.1542/peds.2006-0738.

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That intersex is conceptualized in such opposing ways by various groups generates conflicting approaches to it. The biomedical approach may justify cosmetic surgical interventions as benevolent acts that aim to minimize the stigma and shame of being differently bodied. The sociocultural approach sees the issues that surround intersex as the result of normative ideas about the appropriate relationships between bodies, gender, and sexuality. Only by understanding these phenomena as distinct and variable will we embrace, rather than intervene upon, intersex. This position coincides with broader social shifts in respect for diversity across sex, gender, and sexuality that have driven, for example, LGBT rights in workplaces, states granting same-sex couples the right to marry, and a broader interest in and knowledge of such variability across time and place. Ethical quandaries lie in how opposing ideas of intersex shape what is deemed beneficent medical care. If the problem of intersex is framed as “abnormal genitals,” surgery may feel like the only obvious alternative. However, if the problem is seen as restrictive and normative ideas about what male and female bodies should look like, the concern might be viewed as “potential for teasing” or “challenges of growing up with an atypical body,” concerns that open up a range of other options such as psychosocial and peer support. The problem remains that socio-cultural perspectives are often considered to be both outside the realm of medicine, but also secondary and inferior to medical imperatives. Consequently, individuals with intersex traits and their families

Diamond, Milton (1934–); Gender Identity and Role; Intersex; Intersex: Disorders of Sex Development; Surgery on Ambiguous Genitalia

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An ethical quandary

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Further readings

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Fausto-Sterling, Anne. 2000. Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books.

Greenberg, Julie A. 2012. Intersexuality and the Law: Why Sex Matters. New York: New York University Press. Malouf, Matthew A., and Arlene Baratz. 2012. “Disorders or Differences of Sex Development.” In Improving Emotional & Behavioral Outcomes for LGBT Youth: A Guide for Medical Professionals, edited by S. K. Fisher, J. M. Poirier, and G. M. Blau, 67–86. Baltimore, MD: Paul H. Brooks. Reis, Elizabeth. 2007. “Divergence or Disorder? The Politics of Naming Intersex” Perspectives in Biology and Medicine, 50(4): 535–543. doi:10.1353/pbm.2007.0054. Reis, Elizabeth. 2009. Bodies in Doubt: An American History of Intersex. Baltimore, MD: Johns Hopkins University Press.

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Preves, Sharon E. 2003. Intersex and Identity: The Contested Self. New Brunswick, NJ: Rutgers University Press. Preves, Sharon E. 2004. “Out of the O.R. and Into the Streets: Exploring the Impact of Intersex Media Activism.” Research in Political Sociology, 13: 179–223. doi:10.1016/S0895-9935(04)13006-4.

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Abstract

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Intersex has long been framed as a medical issue and socio-cultural perspectives on intersex have been viewed as secondary to biomedical ones. Consequently, recommendations for treating intersex traits include medical responses that commonly aim to give the child a body that conforms to sex and gender norms, including cosmetic genital surgery. The medical management of intersexuality has been critiqued by socio-cultural scholars and intersex activists alike for justifying intervention with sex, gender, and sexuality ideologies aimed at normalizing the “abnormality” under questionable informed consent. This narrow focus ignores the diverse needs of the intersex community and precludes the benefits of a more comprehensive approach to intersex care.

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Keywords: activism; gender; intersex; medicalization; sexuality

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