Bex, Med Techs, and Intersex: A Review of Contesting Intersex

In the Grey’s Anatomy episode “Begin the Begin” Bex, a fourteen-year-old, comes in for a biopsy on an enlargement of a pelvic lymph node. In the process, it is discovered that Bex has a benign tumor compressing, not an ovary, but a testicle: Bex is intersex. Her parents, in light of this discovery, request that the doctors remove her intersex trait without telling Bex. Appalled, the doctors refuse, forcing Bex’s parents to tell her the truth (see appendix for clips from the episode). In “Begin the Begin” the medical professionals are painted as the heroic advocates for intersex individuals while the parents appear insensitive and selfish. Contesting Intersex, the scholarly monograph by Georgiann Davis, offers a different view. In Contesting Intersex, Davis argues “that medical professionals have replaced intersex language with disorder of sex development nomenclature, a linguistic move designed to reclaim their authority and jurisdiction over the intersex body.”[1] Far from being the heroes we see in “Begin the Begin,” in her monograph, Davis paints the medical professionals as antagonists to intersexuality and those it affects.

Davis is uniquely qualified to author such a text in that she herself is an intersex individual who has experienced firsthand the negative impacts the medical field can have on intersexuality and those who experience it. When Davis was thirteen, she was diagnosed with complete androgen insensitivity syndrome (CAIS). Worried that knowledge of her condition would stunt her developmental trajectory, her parents and doctors concealed her diagnosis: “the doctors told me that I had underdeveloped ovaries that had a very high risk of being cancerous and would need to be surgically removed before my eighteenth birthday […] The purported ovaries were actually undescended testes […] and when I was seventeen, I had surgery to remove the supposedly dangerous organs.”[2] It was not until she requested a copy of her medical records when she was nineteen that Davis discovered the truth. Almost a decade later, liberated by her feminist studies in her sociology doctoral program, Davis felt empowered enough to have her first experience with the intersex community at a meeting of the Androgen Insensitivity Syndrome Support-Group- USA in Chicago. It was there that Davis decided she wanted to “pursue a sociological analysis of intersex in contemporary U.S. society”[3] and the idea behind Contesting Intersex was born.

Formally, Contesting Intersex resembles Anne Balay’s Steel Closets, parts of which we read in class. Like Balay, Davis compiled a collection of interviews to compose an oral history on the subject of intersexuality. Davis interviewed sixty-five individuals: thirty-six adults with intersex traits, seventeen parents of children with intersex traits, ten medical experts on intersexuality and two social movement organization board members. To preserve their anonymity, participants chose a pseudonym at the beginning of the interview and Davis assigned medical professionals letters, A through J. Davis then used what the interviewees told her to explore a host of issues surrounding intersexuality in an attempt “to understand the complexities of living outside sex, gender, and sexual binaries”[4] and “to elucidate how those binaries constrain all of us, whatever our genitalia.”[5] Davis’s argument is focused on three facets of intersexuality: Nikolas Rose and Carlos Novas’s theory of digital biocitizenship, sociologist Barbara Risman’s gender structure theory, and the shift from intersex language to the terminology of disorders of sexual development (DSD) as a result of the 2006 “Consensus statement on the Management of Intersex Disorders.”

Before we can understand how gender theory and the theory of biocitizenship (both of which later serve as lenses through which Davis does much of her analysis) intersect Davis’s argument, we must first understand DSD terminology and the tensions it has created within the intersex community. In 2006, the medical community switched from defining those with intersex traits as intersex to defining them as individuals with disorders of sexual development. Davis argues that “DSD terminology has heightened tension within the intersex community. Some individuals born with intersex traits are embracing the new nomenclature; others resist it, citing the pathologization that underlines the term disorder.”[6] Furthermore, from her interviews, Davis determined that those who embrace intersex language, rather than DSD, have more positive self-identities or ideas about themselves but, have troubled relationships with medical professionals and parents while those who embraced DSD nomenclature tend to report positive relationships with doctors and parents but have less positive views of themselves. Davis argues that this is because “Disorder of Sexual development implies that the sex binary system is natural”[7] and, thus, portrays intersex as a negative deviation or mutation from the “natural” system.

Davis uses Nikolas Rose and Carlos Novas’s idea of digital biocitizenship and sociologist Barbara Risman’s gender structure theory to explore how DSD terminology, and by extension the medical community, is detrimental to the intersex community. Digital biocitizenship (a term Davis uses interchangeably with biological citizenship) is the electronic connection of an individual to a specific community via “a support group website or email listserv.”[8] This is significant because Davis argues that “for intersex people, biological citizenship is accessible only to those willing to engage with DSD nomenclature.”[9]

While biocitizenship demonstrates the issues with DSD on one level, Davis uses Risman’s theory to show the pervasive detriments of DSD on all levels of society. Davis explains that the theory “conceptualizes gender as deeply embedded as a basis for stratification not just in our personalities, our cultural rules or institutions but in all these, and in complicated ways.”[10] By looking at intersexuality through this lens (that is, the idea that gender and sexuality affect three levels of society: the individual, the institutional, and the interactional) Davis is able to analyze her interviews for “the consequences of meanings of intersex at the institutional, individual, and interactional levels.”[11] This, then, is what the majority of her book is dedicated to: the exploration of intersexuality and the consequences of DSD terminology on all three levels. She concludes the text by highlighting “the possibility for social change in the form of practical actions that intersex activists and allies can take to decrease intersex stigma and the shame and secrecy that surround it”[12] and the need for “medical allies”[13] to the intersex community to help said change come about.

When evaluating Contesting Intersex, it is important to consider not just the strength of the book’s argument (which is well supported by a plethora of anecdotes and, further, compelling analysis of those anecdotes) but also its value in the greater context of queer theory. Because of the unique authorship of Contesting Intersex, it is more important to highlight the overall generic value of the text rather than a specific strength within the text itself. What makes Contesting Intersex remarkable in intersex scholarship, and queer theory in general, is that it is written by a member of the intersex community. Throughout the text, Davis highlights her unique perspective and how her “personal experience with intersexuality provided an inroad into the field and community.”[14]  Because she was an “insider” her interviewees trusted her and were willing to share, perhaps more willing than they would have been with someone approaching the same issue from the outside. As Peggy –on of the intersex individuals Davis interviewed- said to Davis: “I feel that you’re going to be on my side. You’re not like someone at the zoo saying, ‘well I’m a human being and I’m taking notes on monkeys.’ You’re the monkey in the cage with me.”[15] Contesting Intersex contains many very personal delicate anecdotes that offer eye-opening insight into intersexuality and it’s possible that these valuable contributions would have been censored, altered, or kept secret if the interviewees hadn’t felt that they could share with Davis because of their common struggle. Thus, a strength of Contesting Intersex is that it offers its readership valuable and obscure understanding of something most of us cannot experience firsthand and may not have access to secondhand.

In a somewhat paradoxical notion, the greatest strength of Contesting Intersex and the greatest limitation concern the same aspect of the text. Contesting Intersex is valuable and strong because it provides important, new, and normally inaccessible information to queer theory and the public in the form of its interviews but, just as the book is strengthened by the interviews, it is also limited. Davis contained her research to four intersex support organizations and, in doing so, homogenized the pool from which she was gathering information. In her own words: “because my recruitment was limited to the four organizations […] it was difficult to locate participants who did not have a formal higher education.”[16] Although the pool contained individuals of racial and ethnic diversity, there was very little diversity with regards to the education levels of the interviewees, which may have lead to a lessening in the diversity of experiences Davis, and by extension her readership, were privy to. “Given that the racial and ethnic minorities in my sample had completed at least some college and most held college degrees, it seems likely that the absence of racial/ethnic differences has more to do with common education backgrounds than with any potential claim that racial and ethnic minorities at large experience intersexuality in a similar way to white individuals.”[17]  Davis admitted in her introduction that, for the most part, those who attend support groups and actively seek out the intersex community have achieved a certain level of education. I felt that by not limiting her research to the support groups Davis would have been better able to see how diversity affects intersex individuals and come to some conclusions regarding the intersection of race, class, ethnicity and intersexuality.

I was diagnosed with Type One Diabetes when I was two years old and it was my wonderful medical team that got myself and my family through the tough diagnosis and the subsequent years (to this day, in fact, I am still heavily dependent on a multitude of medical professionals). Because of this, I have always idealized medical experts and seen them as everyday superheroes without the capes. Thus, the premise of Contesting Intersex was, for me at least, radically eye-opening and slightly horrifying. That being said, I value it for its bold exposé of the darker side of the medical world. Well-supported and convincing, Davis’s argument demonstrating modern medicine’s use of DSD terminology to commandeer intersex agency is engaging and well written and is a text that anyone looking to holistically understand today’s medical institutions (or the general challenges intersex individuals face in today’s society) should absolutely check out.

Appendix

Bibliography

Georgiann Davis. Contesting Intersex: The Dubious Diagnosis. New York: New York

University Press, 2015.

 Footnotes

[1] Georgiann Davis. Contesting Intersex: The Dubious Diagnosis. New York: New York University Press, 2015, 2.

[2] Davis, Contesting Intersex, 4.

[3] Davis, Contesting Intersex, 5.

[4] Davis, Contesting Intersex, 7.

[5] Davis, Contesting Intersex, 7.

[6] Davis, Contesting Intersex, 2.

[7] Davis, Contesting Intersex, 89.

[8] Davis, Contesting Intersex, 3.

[9] Davis, Contesting Intersex, 21.

[10] Davis, Contesting Intersex, 8.

[11] Davis, Contesting Intersex, 9.

[12] Davis, Contesting Intersex, 24.

[13] Davis, Contesting Intersex, 144.

[14] Davis, Contesting Intersex, 5.

[15] Davis, Contesting Intersex, 5.

[16] Davis, Contesting Intersex, 12.

[17] Davis, Contesting Intersex, 14.