Contesting Intersex

The Dubious Diagnosis

Georgiann Davis

• Publisher: NYU Press
• Year: 2015
• ISBN:
  9781479891993
• Topic: Social Sciences
• Subtopic: Gender Studies
• Index: Social Sciences

Watch Georgiann Davis in National Geographic's Gender Revolution documentary with Katie Couric A personal, compelling perspective on how medical diagnoses can profoundly hurt, or help, the lived experiences of entire communities Winner, 2017 Sex and Gender Distinguished Book Award, presented by theAmerican Sociological Association Winner, 2016 Donald Light Award for the Applied or Public Practice of Medical Sociology, presented by the American Sociological Association When sociologist Georgiann Davis was a teenager, her doctors discovered that she possessed XY chromosomes, marking her as intersex. Rather than share this information with her, they withheld the diagnosis in order to “protect” the development of her gender identity; it was years before Davis would see her own medical records as an adult and learn the truth. Davis’ experience is not unusual. Many intersex people feel isolated from one another and violated by medical practices that support conventional notions of the male/female sex binary which have historically led to secrecy and shame about being intersex. Yet, the rise of intersex activism and visibility in the US has called into question the practice of classifying intersex as an abnormality, rather than as a mere biological variation. This shift in thinking has the potential to transform entrenched intersex medical treatment. In Contesting Intersex, Davis draws on interviews with intersex people, their parents, and medical experts to explore the oft-questioned views on intersex in medical and activist communities, as well as the evolution of thought in regards to intersex visibility and transparency. She finds that framing intersex as an abnormality is harmful and can alter the course of one’s life. In fact, controversy over this framing continues, as intersex has been renamed a ‘disorder of sex development’ throughout medicine. This happened, she suggests, as a means for doctors to reassert their authority over the intersex body in the face of increasing intersex activism in the 1990s and feminist critiques of intersex medical treatment. Davis argues the renaming of ‘intersex’ as a ‘disorder of sex development’ is strong evidence that the intersex diagnosis is dubious. Within the intersex community, though, disorder of sex development terminology is hotly disputed; some prefer not to use a term which pathologizes their bodies, while others prefer to think of intersex in scientific terms. Although terminology is currently a source of tension within the movement, Davis hopes intersex activists and their allies can come together to improve the lives of intersex people, their families, and future generations. However, for this to happen, the intersex diagnosis, as well as sex, gender, and sexuality, needs to be understood as socially constructed phenomena. A personal journey into medical and social activism, Contesting Intersex presents a unique perspective on how medical diagnoses can affect lives profoundly. Ask us about setting up a Skype-in with the author for your class

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Introduction

“You’re in the Monkey Cage with Me”

Summer in Chicago is a time for exploring the city, visiting Lake Michigan, enjoying great food, and debating the causes of the Cubs’ inability to win. However, in the summer of 2008, a group of more than one hundred visitors chose to stay in their run-of-the-mill conference hotel rather than discover what Chicago has to offer. Mostly white middle-class women, young and old, from around the country, they had come to the Windy City for the annual meeting of the Androgen Insensitivity Syndrome Support Group–USA (AISSG-USA).

Unlike most other national conferences, this one had no posters with its name decorating the hotel. Instead, the signs that led attendees to their registration site displayed a colorful orchid and the words “Women’s Support Group” in bold letters, followed by “Please do not disturb.” Curious hotel employees and guests found the meeting mysterious. One employee asked me, “Why are all of you needing support?” I shrugged my shoulders, not sure how to respond.

In fact, the ambiguity of the signs was appropriate to the purpose of the meeting, whose attendees were distinguished by the fact that the sex they were born with had been deemed biologically ambiguous by the medical profession. To put it another way, almost everyone at the meeting had been born with an intersex trait (or accompanied someone born with an intersex trait). In many instances, the result was physical bodies incongruent with sex chromosomes.1 In the past, these individuals might have been considered hermaphrodites, a term that some—but not all—in the intersex community now consider derogatory. Terms less contentious today include intersex, intersex traits, intersexuality, and intersexual, which I will use throughout Contesting Intersex.

This book is about how intersex is defined, experienced, and contested in contemporary U.S. society.2 I argue 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. Ironically, this disorder of sex development (DSD) terminology was strategically introduced in 2005 by Cheryl Chase, a prominent intersex activist, and her allies, who had hoped the new nomenclature would improve medical care for those born with intersex traits.3 Instead, as I show here, 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 underlies the term disorder; a few are indifferent to diagnostic labels and think individuals should use whatever term(s) they prefer.4 My hope is that Contesting Intersex will tease apart the tensions over terminology in the intersex community, while also showing how power resides in diagnostic labels.

Although intersex is itself a term whose meaning is contested, in general it is used to describe the state of being born with a combination of characteristics (e.g., genital, gonadal, and/or chromosomal) that are typically presumed to be exclusively male or female. People with androgen insensitivity syndrome (AIS), for example, have XY chromosomes and testes “but lack a key androgen receptor”5 that consequently prevents their bodies from responding during gestational development and beyond to the normal amounts of androgens (an umbrella term for testosterone) their testes produce. Depending upon how much androgen the receptor blocks, some AIS individuals have ambiguous external genitalia (usually a larger clitoris that resembles a small penis) with either internal or external testes, while others have an outwardly “normal”-looking vagina with a shortened vaginal canal, no uterus, and undescended testes. Swyer Syndrome, sometimes referred to as XY gonadal dysgenesis, is another example of an intersex trait. Like individuals with AIS, people with Swyer Syndrome have sex chromosomes that are inconsistent with their phenotype (external appearance). Swyer Syndrome is characterized by the presence of streak gonads, but unlike those with AIS, individuals with Swyer Syndrome usually have a uterus, though it is generally smaller than usual. People born with traits such as AIS or Swyer Syndrome are sometimes referred to as “intersex,” meaning they do not fall into the binary of “male” or “female.” According to the Intersex Society of North America (ISNA), there are approximately twenty different intersex traits.6

There is no simple medical explanation for the cause(s) of intersex, no agreement on what defines intersex, and no formal record of those born with such “abnormalities.”7 All of these lacks presumably contribute to the challenge of establishing the frequency of intersex. Still, estimates have been made, with the most-used figure suggesting 1 in 2,000 people is intersex,8 but because estimates drastically vary across publications,9 I’m uncomfortable offering my own estimate. What I do know, however, is that intersex people exist all around the world.

Estimates of intersex in the population did not matter to the conference attendees, who shared a unique medical history and had a strong connection with one another. They were there to support one another in healing from what, for many, has been a life full of medical lies, deception, and unnecessary surgical intervention. Yet if you had happened to stumble into that Chicago hotel that summer weekend, you would have had no idea of what had brought the attendees together. Without the “Women’s Support Group” signs, you might have imagined that you were interrupting a meeting of sorority sisters or a family reunion. A group official told me that one reason for the secrecy was to prevent any attendees from feeling uncomfortable or “freakish.” This was also why the support group’s public website did not name the conference location.

I found AISSG-USA through that very website, as I searched the Internet for information about my intersex “abnormality.” As a twenty-seven-year-old individual with complete androgen insensitivity syndrome (CAIS), I had met only one other intersex person, a friend from work who was as private about her diagnosis as I was about mine. I wanted to know more about intersex, and I started my search for information online. Although I did not know it at the time, in doing so I was employing what Nikolas Rose and Carlos Novas (2005) label digital biocitizenship. To Rose and Novas, digital biocitizenship connects one electronically to a specific community via, for example, a support group website or e-mail listserv.

I was diagnosed with CAIS around the age of thirteen. I was experiencing abdominal pains, and my mother thought I would soon begin menstruating, a rite of passage for women in my family, as in many other families. However, my period never came. The abdominal pain went away, but my mother was concerned enough to seek medical advice. I soon found myself in an endocrinologist’s office, wondering why so many doctors were literally looking over—and within—my body. At the time, the doctors told me I had underdeveloped ovaries that had a very high risk of being cancerous and would need to be surgically removed before my eighteenth birthday. But the doctors were lying: The purported ovaries were actually undescended testes. Encouraged by medical providers, my parents went along with the lie, and when I was seventeen, I had surgery to remove the supposedly dangerous organs.

I would not see a doctor again, or discover that I had an intersex trait, until, at nineteen, I relocated to a new area far from my childhood medical providers, where I sought new doctors. As is customary, they requested that I bring my medical records with me to my appointment for a routine physical. When I finally got my hands on my surgical records, I read them in utter disbelief. That was my first encounter with the truth about my body and the medically unnecessary surgery I had undergone. At that time, it made me deeply uncomfortable to learn that I had XY chromosomes and testicular feminization syndrome—the label for my trait when I was initially diagnosed. I was in tears as I read what one gynecologist had written in my medical file: “After extensive discussion I feel pt [patient] needs surgery to have gonads removed. She is not aware of any chromosomal studies and most literature agrees it best she not be aware of the chromosome studies. She has been told she is missing her uterus, she does have a vagina. She has no tubes. She has been told she may have streaked ovaries and they should be removed because of the possibility of developing gonadal cancer” (personal medical records, November 26, 1997).

I was shocked and confused. Why had my medical providers and parents lied to me for so many years? I thought I’d had surgery because of a health risk.10 Was having an intersex trait that horrible? I remember thinking I must be a real freak if even my parents hadn’t been able to tell me the truth. I ran to the dumpster outside my building and threw my records away, not wanting to be reminded of the diagnosis or the surgery that couldn’t be undone.

Almost a decade later, I was finally emotionally ready to confront my medical past, and I requested another set of my records. I was exploring feminist theories and gender and sexuality scholarship in my sociology doctoral program, an incredibly empowering experience that positioned me to revisit my personal experience with sex, gender, and sexuality binaries. Our assigned readings and thoughtful classroom discussions encouraged me to delve deeply into my medical history, first with close graduate school friends and faculty, eventually with anyone who cared to listen. Finally feeling liberated, I sought others like me, which is how I ended up at my first intersex support group conference, which happened to be in Chicago that year.

This project was born during that emotional weekend, which will forever mark my first involvement with the intersex community. Although I entered the weekend as an individual with an intersex trait looking for peers, by its end I was determined to pursue a sociological analysis of intersex in contemporary U.S. society. Despite my personal experience with intersex, I was initially concerned that I would have difficulty gaining access to a community that hasn’t had the best experiences with researchers, notably psychologist John Money, whose work was discredited after the discovery of his falsified data and unethical research practices (see chapter 3).11 I was wrong: AISSG-USA was incredibly supportive of my research, as was each of the other organizations I studied. It became clear during data collection that my personal experience with intersexuality provided an inroad into the field and community that would eventually become my second home (see Figure 1.1). In the fall of 2013, I was elected president of the AIS-DSD Support Group, the new name of AISSG-USA, which had just started to allow men with intersex traits to attend their annual meeting (clearly, a lot had changed since I’d attended my first meeting).

As a result of the access, support, and assistance I received in connecting with intersex community members, I was able to collect a tremendous amount of data in a relatively short time. During this period, I formed friendships throughout the intersex community, to which I am now permanently connected. For I am not only studying the intersex community, I’m in it. As Peggy, a fifty-six-year-old with an intersex trait, said to me, “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 the monkeys.’ You’re in the monkey cage with me.”

Like that of many of my research participants, my experience with intersexuality has left me with some horrific physical and emotional scars. However, it has also become the core of my intellectual passion and academic commitment. On January 7, 2010, in the midst of my data collection, I met fifty-three-year-old Cheryl Chase, who was instrumental in the rise of the intersex rights movement nearly two decades earlier. As we finished our emotionally intense interview, Chase wrote on a piece of paper, “Georgiann, Finish your PhD and change the world!” That note, along with a framed picture of the two of us, greets me every time I sit down at my desk. It is not just memorabilia from the field; it is symbolic of my commitment to our entire community, no matter how divided—over medical terminology and how best to advocate for change—we are today.

Figure 1.1. A publicly available photo of individuals with intersex traits at the 2010 Annual Meeting of AISSG-USA. I am surrounded in this picture by a handful of AISSG-USA members who, like me, have an intersex trait. I am the one standing in the middle of the crowd wearing a dark button-down and glasses. Photo uploaded to Wikipedia by Ksaviano.

The remainder of this chapter introduces the theoretical and methodological underpinnings of my study. I begin with a discussion of gender structure theory, a framework I rely on to understand the complexities of intersex in contemporary U.S. society. I then turn to my efforts to develop trust with the community before collecting interview data, the process of participant recruitment, and an overview of my participants. I end this section by turning the methodological lens on myself. While I acknowledge that my insider/outsider status offered access and insight into the intersex community, I use the concept of the looking-glass self to explain how I unintentionally altered my appearance throughout data collection to match how I believed I would be perceived by those I was studying, regardless of whether such perception was warranted. This raises the concern that researchers may self-police their gender presentation. Studying the intersex community, I have been able to combine my personal and professional interests in an attempt to understand the complexities of living outside sex, gender, and sexuality binaries. My hope is that this understanding will help to elucidate how those binaries constrain all of us, whatever our genitalia.

Applying Gender Structure Theory

Contesting Intersex builds on the short history of sociocultural studies of intersex. For example, in 2003, sociologist Sharon Preves published Intersex and Identity, wherein she argues that intersex people confront through a series of overlapping stages of identity formation the stigma of being differently bodied. Preves documents how intersex support groups provide a venue for intersex people to connect with one another, resulting in the identity-based intersex rights movement. Preves’s work was groundbreaking, but subsequent events have turned it into social history. In 2008, medical anthropologist and bioethicist Katrina Karkazis introduced an impressive methodological approach to the study of intersex in her book Fixing Sex. She was the first scholar to bring together rigorously the perspectives of multiple stakeholders in the community: intersex people, their parents, and medical experts. Karkazis eloquently shows how the medicalization of intersex—and the ideologies of sex, gender, and sexuality that are at the core of that medicalization—perpetuate medical authority over the intersex body. Her focus on multiple stakeholders and ideology makes her work an important precursor to Contesting Intersex, which moves forward to focus on intersex after the formal introduction of DSD terminology. But my concerns also differ in two important theoretical ways. First, I consider how the social construction of diagnoses made it possible for intersex to be transformed into a DSD, and second, I ground my analysis of intersex in gender structure theory.

Intersex is a problem because it disrupts the traditional gender order. If our behaviors weren’t constrained by gender, if opportunities weren’t filtered through gender, and if gender weren’t tied to bodies and identities, it is doubtful that intersex would be as problematic throughout the world as it is today. Thus, I ground this study of intersex in gender theory, specifically in the idea that gender needs to be understood as a stratification system residing not only in individuals but also at the institutional and interactional levels of society (e.g., Butler 2004, 1993, [2006]1990; Martin 2004; Risman 2004, 1998; Ferree, Hess, and Lorber 1999; Lorber 1994; Connell 1987). To do so, I frame my analysis with sociologist Barbara Risman’s gender structure theory (2004, 1998), which I find particularly useful because it can be adapted to integrate other theoretical insights, such as the ideas of sociologists Nikolas Rose (2007, 2001) and Carlos Novas (Rose and Novas 2005) about the simultaneously individualizing and collectivizing nature of biological citizenship, Annemarie Jutel’s (2011, 2009) theoretical contribution about diagnoses, and philosopher Giorgio Agamben’s (2005, 2000) account of state of exception.

Gender structure 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” (Risman 2004, 433). The institutional dimension of gender structure dictates—through a variety of structural processes, including organizational practices and policies about behaviors (e.g., Giddens 1984)—a powerful conceptualization of gender that is tied to bodies. The individual level of gender structure is where the development of a gendered self emerges through the internalization of a male or female identity and its assigned personality attributes (e.g., Chodorow 1978). Within this individual level of gender structure, we come to see ourselves as male or female and masculine or feminine—as if doing so were that simple, achievable, and unchanging. Although we see one another’s genitals only in very intimate settings, we constantly make assumptions about whether one is male or female on the basis of gendered clothing, mannerisms, and hairstyles. This is the interactional dimension of gender structure and it is where people “do gender”: a function of social psychology that involves categorization by sex, which triggers stereotypes and gender expectations that ultimately influence how a person is treated, approached, and expected to behave in social circumstances (West and Zimmerman 1987; see also Garfinkel 1967 and Goffman 1976, 1959). Each of the dimensions of gender structure shapes and is shaped by the others. For example, our internalization of a gender identity occurs in relation to how the law defines us at the institutional level and how, at the interactional level, we are expected to...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgments
• 1. Introduction: “You’re in the Monkey Cage with Me”
• 2. The Transformation of Intersex Advocacy
• 3. Medical Jurisdiction and the Intersex Body
• 4. The Power in a Name
• 5. A Different Kind of Information
• 6. Conclusion: The Dubious Diagnosis
• Appendix A: Table of Research Participants
• Appendix B: Conference Agenda
• Notes
• References
• Index
• About the Author