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The Body/Secret Dynamic: Life Experiences of Intersexed People in Israel

The Body/Secret Dynamic: Life Experiences of Intersexed People in Israel Intersexed subjects experience their bodies through the repercussions of treatment policies implemented in their bodies at birth and throughout their lives. Secrets and secrecy comprise a major element of the treatment policy toward intersexed subjects in Israel and act as a disciplining and normalizing force in the life experience of intersexed subjects. This article presents case studies of intersexed adults, subjects through whom we can learn about both historical and contemporary treatment policy toward intersexed people as well as about the perpetual conflict between the particular corporeal existence of individuals and the experience of the secret and secrecy in their lives. The purpose of this article is to shed light on the dynamics that exist between the secret and intersexed bodies and the paradoxical consequences of body/secret relations. Keywords intersexed people, body, secret, min-guf process, Israel examined the ways in which the secret is a significant part of Introduction the medical treatment of intersexed people in Israel and other I have a secret, I have a secret. [cries] We don’t talk about it. . . . countries (Audi, 2014; Karkazis, 2008; Kerry, 2008) and It’s not diabetes where you need regular treatment, and it’s not explored the ways in which the secret is reproduced by par- TERT syndrome or any other known syndrome. The very fact ents of intersexed children and becomes part of family lives. that it’s not spoken about means that I have a secret—a secret In this article, I focus on the embodied particular experi- I’m aware of because it wasn’t repaired from birth and I had to ence of the secret in the narratives of three intersexed adults. live on pills. I’m telling you that from birth they hooked me up I chose to focus on only three narratives to explore in depth to a “respirator” that I can only be disconnected from when I’m 18. (Or, November 6, 2009) each individual’s experience of living with an intersexed body and the secret that surrounds it. While every participant Hearing this testimony represented a foundational, in this study experienced the powerful secrecy that surrounds insightful moment for me as a person who has been research- their bodies and is manifested in the complexity of the body/ ing the intersexed body for the past 7 years. This was the secret relationship, the narratives of these three participants moment at which I first understood the significance and pro- in particular highlight the complexity of living with the found power of the secret in the everyday living experience secret and secrecy as well as the practice of body/secrecy in of many intersexed people. I had known that intersexed peo- familial, medical, and personal relations. Hence, I chose to ple were told lies and lived with secrecy (Chase, 1998; Cote, focus on each of these narratives to reveal the particular, 2000; Ford, 2000; Harper, 2007; Holmes, 2002, 2008; unique living experiences that they portray. Preves, 2003), yet, even when for years the secret and secrecy In these narratives, the motifs of secrets and secrecy are surrounding intersexed people made it difficult for me to col- prominent, as they are in narrative studies and other kinds of lect research data and contact intersexed people and parents studies that focus on the life experiences of intersexed peo- of intersexed children and adults in Israel, I accepted this ple. Secrets and secrecy characterize both treatment policies situation as a given, assuming that the phenomenon itself and the behavior of the parents of intersexed people, thus was an extremely private matter, kept within the confines of comprising an integral element in their life stories. Secrets hospitals to maintain patients’ privacy. But when Or cried and explained how the secret controls and damages her social Ben Gurion University, Beer-Sheva, Israel and familial life and how suicidal thoughts ran through her Corresponding Author: head, I realized that I needed to reframe the secret as a force- Limor Meoded Danon, PhD, Ben Gurion University of the Negev, ful social agent that threatens the very being of intersexed Beer-Sheva, P.O.B 653, Israel. people. In my doctoral dissertation Meoded Danon, 2012), I Email: limormdanon@gmail.com This article is distributed under the terms of the Creative Commons Attribution 3.0 License Creative Commons CC BY: (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (http://www.uk.sagepub.com/aboutus/openaccess.htm). 2 SAGE Open and secrecy encourage stigma, shame, low self-esteem, lone- quickly as possible, which would allow “hermaphrodite” liness, lack of trust in others, difficulty in creating intimate children to be socially accepted and unstigmatized. In fact, relationships, and a host of other problems (Feder, 2006; Money et al. (1955) encouraged doctors to “talk frankly” Karkazis, 2008; Kerry, 2008, Meoded Danon, 2012, 2014; with hermaphrodite children, and claimed that “truth is sel- Lev, 2006; Preves, 2003). Paradoxically, treatment policies dom as distressing as the mystery of the unknown” (p. 294). have historically attempted to prevent these negative phe- Theoretically, they argued in their article that “hermaphro- nomena, so they have often attempted to normalize the body dite” children should not be kept in the dark regarding their through surgery and hormones, tailoring it to one of the two physical state, but, unfortunately, we revealed that only four typical sexes/genders: male/female, man/woman. decades later, there is a tremendous gap between their theory The moment of discovering the secret, that is, their par- and the actual realities of intersexed people. ticular “intersex” physical condition and their treatment his- Since the 1990s, much criticism has been voiced against tory, was perceived by intersexed people as a significant, the “Money Protocol,” especially regarding the problematic life-changing event that not only legitimized their emotions connection between gender identity and the “true sex” of both in the past and in the present but also opened many intersexed people. For example, Suzanne Kessler claimed questions and left them with a great deal of anger and frustra- that Money and his colleague evaluated penis size (“a good- tion toward their doctors and parents, who had concealed sized penis”) as the sole condition for raising a newborn as a information from them. Studies of the life experience of boy. Chromosomes and other physiological characteristics intersexed people, such as those of Sharon Preves (2003), were less relevant than penis size, so babies with penises Katrina Karkazis (2008), and Stephen Kerry (2008), have smaller than the ideal of the medical staff, with hypospadias, often related to the intersexed body as a discursive, medical with XY46 sex chromosomes and testes were forced to body, a passive product of biomedical science. Unlike previ- undergo “corrective” genital surgery and raised as girls ous studies, this one aims to demonstrate how the material (Kessler, 1990, pp. 12-13). Anne Fausto-Sterling (1993) intersexed body, like any other human body, is dynamic, and argued in her pioneering article “The Five Sexes: Why Male senses, experiences, and even opposes attempts to normalize and Female Are Not Enough” that the biomedical profes- it in its own unique ways. Moreover, this study describes the sionals at Johns Hopkins disciplined intersexed bodies complex relationship between the body and the secret and according to stereotypical gender norms, instead of seriously reveals how the secret is experienced as a foreign object that and deeply studying the many (at least five) sexes of the the body cannot tolerate. It also interrogates the ways in human body. In the summer of 1993, soon after the publica- which the secret is established in the body and its effects on tion of “The Five Sexes,” Sheryl Chase, an intersexed activ- the embodied subject, and explores what causes intersexed ist, established the Intersex Society of North America people to feel alienation from their lives in general and their (ISNA), the first organized group of intersexed activists. bodies in particular. Chase, like most ISNA members, had been treated and oper- The existence of the intersexed body and the act of keep- ated on according to the “Money protocol,” for 60 years, ing it secret have been linked, in an institutionalized manner, which was internationally recognized and followed. ISNA through the traditional protocol outlined by Johns Hopkins began to voice its criticism of this protocol on the Internet, in Hospital in the 1950s. At the time, John Money and his col- the popular media, and in literature. The writings presented leagues were conducting pioneering clinical and psychologi- in the book Intersex in the Age of Ethics (Dreger, 1999) cal studies on “hermaphroditism,” and were considered the brought to light the living experience of many intersexed leading authorities on the subject. The Johns Hopkins profes- people, revealing that they had grown up unaware of their sionals believed that gender role and gender identity (Gender physical diagnosis and the significance of their physical– R/I) should establish and guide the treatment policy of “her- surgical histories, as their physicians and families had lied maphrodite” children. According to this perception, the core and concealed this information from them, and they had to problem of “hermaphrodite” adults was being assigned to the discover it on their own. For most of them, this discovery “wrong gender,” which caused social alienation, stigma, and was traumatic. They felt that they had been living a lie for psychopathological problems. Hence, they claimed, her- years and were forced to cope alone with the consequences maphrodite children should be assigned a coherent gender both of the surgeries carried out on their bodies, which role as early as possible (no later than 18 months of age), and caused much physical and emotional damage, including lack raised in accordance with it, while those with ambiguous of genital–sexual sensation, and of the revelation of their external genitalia should undergo surgical correction. Money bodily secret. As more studies were published and an increas- and his associates asserted that normal looking external geni- ing number of intersexed people revealed their stories, the tals are more crucial than chromosomes, gonads, and internal secrets and secrecy surrounding their bodies have become and other sexual characteristics for establishing a “normal” known as a familiar feature of the dominant narrative and an gender role/identity (Money, 1955; Money, Hampson, & integral element of traditional treatment policy (Chase, 1998, Hampson, 1955, 1957). The Johns Hopkins medical team 2003; Dreger, 1999; Feder, 2002, 2006; Hillman, 2008; focused on diminishing and concealing bodily ambiguity as Holmes, 2002; Lev, 2006; Morland, 2001, 2009; Preves, Meoded Danon 3 1998, 2002, 2003; Sutton et al., 2006). The Chicago power relations and a heteronormative perception of gender, Conference of 2005, organized by the ISNA and other inter- so its research, gaze, and perception of the body are all fil- sex advocates and biomedical professionals, aimed to change tered through language, through a system of meanings that the traditional and problematic “Money Protocol.” The main mark the body as female-feminine or male-masculine. The changes of the medical treatment concerned clinical and paradox is that the normative sexual order is imaginary; pathological nomenclature, with the term Disorder of Sex physical-sexual reality is not organized into two unambigu- Development (DSD) replacing the old terms “hermaphrodit- ous sexes. Science, in its attempt to characterize or assess the ism” and “intersex conditions” (Lee, Christopher, Faisal, & factors or characteristics of the development of sex in the Leuan, 2006). The new guidelines are more centered on body, repeatedly encounters “undesirable” results in bodies patients and families. Experts advocate sharing information (whether those of mice or people) that challenge its on patients’ physical condition and treatment with parents, assumptions. and the optimal sex/gender of the newborn is determined by In contrast to poststructuralism, which perceives the multidisciplinary teams that consider the best interests of human body as “discursive,” a product of construction and patients and families. Interestingly, these teams do not social power relations, the phenomenological approach to include intersexed subjects who could talk about their expe- the body, established through the work of Maurice Merleau- riences and the consequences of treatment. Other changes Ponty (1978), relates to the “subjective” body, focusing on primarily involve improved biomedical diagnostic technol- corporeal, sensory experience. Merleau-Ponty claims that ogy and better surgical techniques (Ganka et al., 2010). our perceptions, consciousness, knowledge, and understand- Nonetheless, the new DSD guidelines are still motivated by ing of the world are manifested through our own bodies, concealing bodily ambiguity, especially ambiguous external which are situated in the world as the heart is in the organ- genitalia, and assigning “normal” sex/gender to “DSD” chil- ism, breathing life into it, carrying it inside itself, and shap- dren. The bodily autonomy of intersexed children is still in ing our perception and understanding of the world around us. great doubt under the terms of current treatments. In other words, our flesh, our material, sensual body con- Furthermore, the very term DSD, as Davis (2011) claimed, structs our living experience, our being in this world. A phe- “constructs ‘sex’ as a scientific phenomenon” in ways that nomenological approach allows us to analyze the experience maintain biomedical authority over intersexed bodies. of intersexed people through their own feelings, senses, and ways of adjusting to social norms through their own particu- lar bodies. Theorizing Intersexed Bodies and the A secret, like a human body, is difficult to define and Power of the Secret frame theoretically. It is elusive and hard to estimate accord- “Intersexed” bodies include a broad range of physical states ing to any measure, because it is multidimensional and mul- that challenge the significance, components, and develop- tihued. The secret depends greatly on the different contexts ment of the sexual body. They comprise various configura- and social interactions within which it exists. Sissela Bok tions of sex chromosomes and different structures of the notes that the Latin source of the word secrecy (secretum) is external and internal genitalia. Just as the body cannot be secernere, to separate, to create a kind of boundary between defined as male or female in a separate, stand-alone category, the external, those who do not know the contents of the and the one always depends on and is compared with the secret, and the internal, those who conceal it (Bok, 1984). other, so it is impossible to define and diagnose the inter- This word actually implies the kind of internal conflict inher- sexed body except in comparison and in relation to typical ent in all secrets. Evan Imber-Black (1998) described differ- female or male bodies. Male and female are sexes that were ent types of secrets, including positive ones, which strengthen established in the past continue to be established by the bio- interpersonal relationships; negative, toxic ones, which poi- social establishment and are not disconnected from cultural son relationships, limiting our lives and our ability to make biases and heteronormative perceptions of sex, gender, and clear and effective decisions; and dangerous ones, which sexuality. pose immediate physical or emotional danger and can cause Michael Foucault’s (1973, 1990, 1995, 2006) poststructur- damage to others and even lead to suicide (Imber-Black, alist discursive view of the human body, established through 1998). These toxic and dangerous secrets are the ones rele- power relations (especially the biopower of human science) vant to our context of intersexed people, because they poison and the discipline of knowledge, influenced writers such as bodily experience and make the existence and experience of Judith Butler (1990, 1993, 2004), Myra Hird (2004), Anne intersexed people extremely difficult. For Georg Simmel Fausto-Sterling (1993, 2000), and others, who challenge the (1906) and Erving Goffman (1963), secrets and secrecy are normative Western discourse on sex and gender categories. positive and essential in social life, and help to protect us Poststructuralism critiques the notion that sex categories are from stigma and keep us from harm while we interact with natural, claiming that, like other social categories, they are the others. Simmel describes what he calls the dialectic of the result of a discourse based on and formed through power rela- secret, in which, for example, the secret creates boundaries tions. Biomedical science is not disconnected from social and increases diversity among people, but, however, entails 4 SAGE Open the temptation to break down boundaries and blur differ- the moderator of this group, who had been born intersexed ences, especially when it is revealed. On one hand, the secret and would be happy to help. It took me 3 years to find other acts as a protective sheath that gives power to those who intersexed people for my study. After publishing calls for know it, but on the other, it produces the tension and danger participants on various Internet sites and forums, in particu- associated with its revelation (Simmel, 1906). Unlike lar endocrinology, parenting, and fertility forums, I eventu- Simmel, Bok (1984) claimed that holders of secrets experi- ally made contact with 11 intersexed adults and 7 parents of ence negative tensions and conflicts that are embodied in intersexed children and adults. All of the names of the par- everything they do. ticipants have been changed to maintain their anonymity, and The dynamics of power can be destructive, as Mark each of the participants signed a consent form, which Karpel (1980) explained with regard to family secrets, claim- described the purpose of the research, their right to stop and ing that holders of secrets have a sort of “nuclear bomb” that leave the study at any time, their right to secrecy and ano- is saved for later use, and the only way to be saved from the nymity, and my contact information, including phone num- cruel secret and its destructive repercussions is to reveal it (p. ber and email address. All the participants chose the locations 296). In a more particular, practical, embodied way, cogni- and times of their interviews, to ensure a relaxed and pleas- tive researchers such as Julie Lane and Daniel Wegner (1995) ant atmosphere. With seven of the intersexed adults, I con- describe the difficulty of keeping a secret, explaining how ducted follow-up interviews to learn more about the changes much energy and effort we need to expend to manage our in their lives and to examine many aspects and themes that thoughts, our behavior, and especially our body language were absent in the first interview. During the study, I realized when keeping a secret. Paradoxically, the more we try to that the secret and secrecy were integral parts of the treat- conceal it, the more we reveal the existence of the secret, ment policy and the life experience of intersexed people, so I because techniques for discovering secrets improve over played a role in keeping their secrets. I had to build their trust time and constantly threaten the shell of secrecy, and also in me and provide a comfortable and safe space in which because our own bodies struggle with the secret. To theorize they could expose their lives to me. To foster their trust, dur- the relationship between intersexed bodies and the power of ing the interviews I informed all the participants about the the secret, I embrace both the poststructuralist and the phe- various stages of the study, its purpose, and what I had nomenological approaches to the body and demonstrate the learned so far. tension that exists between them. While these two approaches During the research process, as I conducted the interviews differ from one another, combining them provides a theoreti- and analyzed my findings, I used the stages and ideas of cal perspective that focuses on the phenomenology of social grounded theory (Charmaz, 2006; Corbin & Strauss, 1990). power that describes how the subjective body experiences Grounded theory makes it possible to focus on the dynamics the power exerted upon it through the agents of social power and changes of the research field, and data from the field in general and the power of the secret in particular. This form the core of the theory. The processes of sampling and approach corresponds with that of Chris Shilling (2005), finding participants were actually part of the fundamental who coined the term “corporeal realism” to describe both the theme of this research. Only after several interviews with connection between body and society and the distinction intersexed people did I understand that the reason for the between them. Shilling’s approach ignores neither the estab- great difficulty involved in finding intersexed people in lished social forces, their influence on the experience of the Israel was the forceful social agent of the secret. In contrast body, nor the body’s unique power, development, and mate- to the public activism of intersex support groups in North rial traits. Therefore, this article adopts Shilling’s perspec- America, the United Kingdom, Germany, and other coun- tive, and both offer an analysis of the power relations that tries, in Israel this group and intersexuality in general are discipline the body, in our case the intersexed body, and con- shrouded in secrecy. There are few participants, not because sider the particular bodily experience of individuals and their of the number of intersexed people in Israel, but because the reactions to social power relations. secret surrounding intersexed bodies is reproduced and man- ifested beyond hospital walls, assimilated into and practiced in everyday social interaction. There are very few (closed) Method and Secrecy group meetings during the year, and there is no critical activ- This article is part of a comprehensive study conducted in ity that challenges the biomedical discourse. As in other Israel between 2005 and 2012. It examined the attitude and Western countries, the biomedical system in Israel is authori- treatment of intersexed people and the life experience of tative and asserts its power over intersexed people. intersexed adults. It included 22 semistructured interviews The term I coined to describe the whole treatment process with biomedical and other professionals in Israel. The most of intersexed people is “the min-guf process” (Meoded difficult task was to reach intersexed people. Fortunately, a Danon, 2012). Min in Hebrew means sex, kind, or type. Guf support group for intersexed people began to operate at the means body. My term, min-guf, implies both the separation same time that I started my research). One of the endocri- (the human body is more than the sum of its sexual organs) nologists gave me their brochure and suggested I speak with and the connection (intersexed bodies treated by the medical Meoded Danon 5 establishment as unfixed sexual bodies) between sex and attempts to obtain them. Before I introduce the contents of body. In English, it could be understood as “the sexing pro- the document, let us connect to Shai’s experience of child- cess” or the sexual transformation of the body. I chose this hood and adolescence: term to focus on the sex category and its various manifesta- I always felt unusual, different, let’s say, from infancy, but I tions in the human body and on the bodily consequences of didn’t understand why. I looked like a girl. . . . I was in the medical treatment. Rather than considering the gender cate- hospital all the time, sometimes for long periods, which gory as the main frame for normalizing and disciplining automatically makes you feel different. . . . To the outside world intersexed people, I claim that sex and gender categories, I showed that I was a boy in an extreme way, being the epitome much like the body and society (sex–body/gender–society), of what a bad boy was and pushing this to the limit, because I are intimately integrated and historically manifested in one felt different. . . . For example, from a very young age I felt another; that there is no actual, clear line between them. The attracted to boys, but I realized that it was forbidden, that you stages of the min-guf process that intersexed people undergo were not allowed to talk about it and no one should know. I used throughout their lives embody the blurring of the boundaries to play secretly with dolls. I loved playing with dolls. between sex/gender and body/society. These stages include diagnosing the sexual characteristics of the body, shaping the Social responses to Shai’s appearance sometimes led peo- body according to one of two typical sexes (female or male), ple to mistake him for a girl and treat him like one, which and performing clinical follow-up of the development of the caused him frustration, pain, and a counterreaction that man- body according to its new conditions. The secret is an insepa- ifested itself in a radicalization of his “boy” behavior. Thus, rable part of the min-guf process, as I will describe in the his behavior toward the world was extreme, extroverted, and following three case studies of intersexed adults. Each of interpreted by him and those around him as “boyish,” in con- these stories presents a unique example of the problematic trast to his behavior in his own world, without peer pressure, and paradoxical living experience engendered by the min-guf where he could express his feelings and desires. His physical process, which aims to conceal intersexed bodies. Despite appearance as a boy–girl caused a contradiction, a dialectic the fact that the experiences described in these stories took between his inner world and the outside world, as he explains, place decades ago, and biomedical technology in many countries, including Israel, has changed considerably in the You have to understand that all my life I’ve simply been acting, meantime, the secrets and secrecy surrounding intersexed and I’m a very, very honest person, so it always bothered me that I had to act. . . . Outside, I looked different. Even today, when bodies still have not changed and continue to exist alongside everyone knows me, they call me “Shai, a man with balls.” In urgent physical intervention at a very early age. point of fact, I have no balls at all [laughs], “Shai with the ostrich Through the stories of the intersexed subjects of this eggs” everyone calls me. study, I will explore the ways in which the secret is estab- lished in the body and examine the dynamics of the secret in Shai was unaware of the cause of the hospitalizations and each particular, embodied subject’s life. It is important to his physical characteristics, but he understood his body as emphasize that these stories are not intended to reflect the “sick.” The third important issue in the context of Shai’s life experience of all intersexed people; on the contrary, they sense of difference is his sexuality and attraction to boys, aim to expose the subjective embodied experience of indi- which was perceived as forbidden in his social environment vidual subjects to emphasize the particular struggles with the and never spoken of. Thus, Shai learned to conceal his sexu- social forces that act on each body. Bodily particularity ality and keep it secret. informs us, casting doubt on the existence of any universal or Secondary sex characteristics, the growth of the penis and unisexual physicality. pubic hair, appeared in Shai’s body at a very young age (5-6), and he was ashamed of them. His communication with his Shai: “A Hospital Child” (August 22, parents was minimal, and he did not ask questions about his physical condition or share with them the physical changes 2008) he was undergoing. This surprised me because parents are Shai was born in Israel in 1955. Despite his age, his body usually aware of physical changes in their children’s bodies, looks like that of a young boy. Large green eyes illuminate but Shai claims that he learned to be independent at a young his face, his hands and feet are small, and he is short. At the age, to shower alone, and take care of his own needs. beginning of our meeting, Shai showed me a 1958 medical During his childhood hospitalizations, he felt that his document that described his physical diagnosis and the deci- body was perceived by doctors as something rare, but he was sions his doctors made about his body. This is the only medi- not sure why: cal document Shai has obtained from his own medical file. Shai does not know about everything that happened to his You’re a little kid and all day they strip you and dress you and body during his childhood and is interested in reading his look at you; that’s how it was. I understood that mine was a rare, medical file, but the hospital where he was treated is conceal- special case, so they all wanted to see, they all wanted to touch, ing his records, despite his legal right to see them and his that’s how it was. Just like an exhibit in a museum. 6 SAGE Open Despite Shai’s otherwise excellent memory, his recollec- conditions in Israel at the time and the biosocial perceptions tion of the years when he was hospitalized has been erased. of Shai’s physicians. The document notes the following: During these years, a number of surgeries were performed on his body, including one to remove his uterus, ovaries, and Empty right scrotum. On the left side a small mass can be felt, fallopian tubes. large penis, uterus, ovaries are present. In conclusion, the child By the time he was 13, Shai’s body had developed in is genetically female, gonadal sex female with completely male accordance with its material terms (due to increased andro- external genitals, the penis is large, urethral tube inside the penis, a well-structured but empty scrotum. Regarding the gen secretion, he underwent puberty very early, but from age child’s future, of course he will have to live as a male, and this is 13, he stopped growing and remained quite short). Each due to the following: the external genitalia are completely male. month, Shai would arrive at the hospital for monitoring. He Constructing a proper vagina to allow a normal sex life as a describes how the doctor treated him like an object, without female is a complicated and difficult thing, and the results are asking how he felt. He would ask him to strip and check the doubtful. The condition of the ovaries cannot be determined length of his bones, limbs, and penis. For some reason, even with certainty. Will there be fertility? If he continues to live as a when it was obvious that his bones were not growing, the male it would be possible to stop administering cortisol. doctor ignored this fact. Increased androgenization will ensure the development of At 17, Shai received his first draft notice for compulsory menstrual periods. In the meantime, we will not perform any military service and underwent a physical examination, surgery, and if there is a need, we will perform the following including an examination of his scrotum. During the exami- required surgeries: partial or complete hysterectomy and removal of the ovaries. We see no justification for shocking nation, it became clear to Shai, through the body language of [words deleted from the document] the parents and telling them the doctors as they looked at one another, that something was about our findings. We released the child with a recommendation amiss with his genitalia. They said nothing to him. He to administer 25 mg of cortisone and instructed the parents to dressed and went home. One month later, he received a letter bring him back for a follow-up visit in 10 days. stating that he was exempt from military service (on grounds of being “permanently unsuitable”). He attempted to appeal Shai’s physical characteristics are described here in a way the decision and asked to volunteer, in any capacity, “just to that presents different kinds of sex: genetic sex, gonadal sex, wear a uniform,” but without success. In retrospect, Shai and external sex. His multisexual body shocked the doctors, says that he understands why the military doctors never told so they could not justify telling his parents about his physical him anything, as this would have been an extremely difficult characteristics. The medical document suggests that the doc- task and a great responsibility to assume, considering that the tors were being considerate of the parents and preventing doctors who treated him during his childhood had not told them from being shocked, but in the document that Shai read him anything. So the military doctors maintained his civilian and is now unable to obtain the doctor wrote that his parents doctors’ rules of secrecy. were “primitive Moroccans,” so the reason for concealing Two years later, Shai was surprised to receive a draft the information from them was the prejudiced perception of notice for 3 years’ service. He now refused to join both his doctors, who assumed that because of their ethnicity, his because the army had rejected him in the past and because he parents would not be able to understand and cope with Shai’s had continued with his life and now had a job and plans for physical condition. Keeping Shai’s intersexed body a secret the future, so he appealed the recruitment and was subse- caused his physicians to perform the min-guf process on him quently summoned to a meeting of the Medical Committee. without sharing it with his parents and without their permis- Before the meeting, he unexpectedly received a large pack- sion. Shai became a “hospital child,” a child who belonged to age containing all his medical documents. This is how Shai the world of those who treated him and its perceptions. describes his experience of discovering the secret: Shai was born with classical congenital adrenal hyperpla- 8 sia (CCAH), which involves a lack of salt in the body and It said “female pseudohermaphrodite,” but one sentence deeply hormonal imbalances that result from an increased secretion shocked me. I’ll remember it to my dying day. . . . It said they of androgens. Shai’s doctors sexed his body as masculine, were making me into a boy because my parents were primitive the reason for this decision being the appearance of his penis, Moroccans. . . . I remember that I went to the committee and like an idiot gave them all the documents. . . . I understood why I felt in particular its size. Shai’s uterus and ovaries were removed, different and what was different and what was wrong with me. . silicone testicles were implanted in his body, and cortisone . . I didn’t want to talk about it, I was ashamed. . . . I buried it in was administered to balance his hormones. some corner of my body and covered it with stones and didn’t In a conversation I had with Prof. B., one of Shai’s doc- want to talk about it. 9 tors, he related the following : Among all the medical documents in the package was the I remember a patient who came from Pediatric Surgery at age document Shai presented to me early in our meeting. It includes two and a half. In a general exam, the doctor said his penis was a description of the min-guf process that Shai underwent during large. The person who conducted the Barr body test [used for his childhood, and reflects both the medical–technological detecting the X chromosome] said, “You know, it’s female. Meoded Danon 7 What shall we do with him now? Cut him? He has a functioning and not female. . . . I had a somewhat feminine voice, but uterus, ovaries. If he’s treated with cortisone he’ll reach sexual relatively low. The hormones made my voice much lower. maturity and then what? The ovaries will wake up, estrogens will make breasts, and then there will be menstruation, he’ll Today, Shai undergoes hormonal monitoring in the adult ‘urinate’ blood. It has to drain into something. It will accumulate endocrinology department, with a kind new endocrinologist in the uterus. What can we do to remedy the problem?” So if you of whom he is very fond. She arranged for Shai to have sur- decide to raise the child as a male, you remove the uterus. . . . We gery to replace the small silicone testicles implanted when he told the parents there was an “incompatibility.” [long silence] At was a child with larger ones. the age of two and half, the child was already big—there was no As Shai began to deal with the secret of his life and learn choice. I believe we made the right decision. Here you have to about his medical past, he became severely depressed and decide whether to amputate this penis. I remember my boss said, required psychological and psychiatric treatment. The more “You don’t amputate a penis like this!” he investigated, the more new things he discovered, includ- ing flashes of negative experiences from the hospital and The doctor’s words indicate that treatment practices in physical and emotional abuse by his doctors. Shai’s coping Shai’s case—that is, the process of sexing him as mascu- alone with the discovery of the secret, while he continued to line—were carried out because of his large penis. This is in hide it from others, threatened his life to the point where he line with the Johns Hopkins University approach of the time, considered suicide, but he decided not to bury his secret with the phallocentric approach, according to Kessler (1998), him. Several years ago, he began to suffer extreme pain in his which related to penis size. However, there is ambiguity lower abdomen and underwent a series of tests that revealed regarding the process of the medical monitoring of Shai’s the stump of a uterus in his body, a kind of historical, mate- body, the ramifications of the surgery for his body, and what rial remnant through which the body signaled, in its own all the doctors did when they noticed during follow-up that way, the physical secret it held inside. Shai’s bones had stopped growing, his body had stayed the The bodily secret, that is, the social, material product of same size, and his “large penis” was now relatively small, as the min-guf process, caused Shai to live in a world divided he stopped growing at age 13. Shai is angry at his doctors, between the external and the internal. These divisions, the who prevented his body from growing and did not prescribe same separation that produces the secret, as Bok (1984) hormone replacement therapy for him. He realizes in retro- claimed, are experienced by the body. The differences spect that the reason for this was to keep the secret from him: between his internal and external worlds caused Shai to learn to become an excellent actor, especially in highlighting his In order not to reveal the truth, [the doctor] would not give me hormones so I wouldn’t ask questions. . . . If you decide to make so-called “masculine” features in his social environment as me a boy, let me look like a boy! For G-d’s sake, give me the opposed to his “feminine” features in private. Shai was seen hormones on time! Everyone in our family is tall, so if you see . by his friends as a “man with balls,” a kind of “bad boy” who . . that I have stopped growing, give me [the hormones], help me acted violently and stood out. My intention in pointing out grow. . . . So, you see that all the signs show that he simply did this behavior is not to distinguish between “masculine” and not want this secret to be revealed. “feminine” features and to perceive them as given, or to reproduce gender stereotypes, but rather to show how Shai At the age of 22, when Shai discovered the secret, he con- distinguishes between these two worlds and to demonstrate cealed it from his friends and family, maintaining the rules of how this separation establishes embodied negative emotions, secrecy and hoping that it would disappear. He did not share frustration, and loneliness. Here, the body itself undermined the discovery with his parents and was especially angry at his the concealment of the secret, especially in the external father because he thought that he (who had accompanied him “boy–girl,” appearance that caused people to mistake Shai to the hospital during his childhood) had known about every- for a girl. The more people mistook him for a girl, the more thing and been involved in the doctors’ decision making. extreme were his reactions—“bad boy” behavior and chang- Only in 1997, years after his father’s death, when Shai was ing his appearance as an adult, growing a beard, and having able to read all the medical documents, did he realize that his larger silicon testicles implanted. However, the concealment parents actually had not been informed. game is exhausting and frustrating. For Shai, the hormones Shai decided to tell Dr. H., the new endocrinologist who are “a sham,” not a part of him. He says that he would like to replaced the doctor who had treated him throughout his child- rest from his frustrating struggle with the bodily secret and hood, that he knew what had happened to him and that it both- social conservatism. ered him that people mistook him for a girl. Dr. H. never Shai’s min-guf process established a bodily secret that spoke to Shai about his physical history, but he was kind to transformed his body and poisoned its being. The treatment him, explains Shai, and prescribed testosterone, which Shai policy, together with the bodily secret, led to Shai’s body being has taken ever since. He describes the changes in his body: neither female nor male, but rather a different kind of body, a body without internal sex organs, with a small penis and sili- I started shaving, which made me very happy. [smiles] I also cone testicles, a body that depends on synthetic hormones. grew a beard. For years I had a beard to show that I was male 8 SAGE Open Shai physically experiences resistance to the bodily secret in She felt terrible and cried all night. Until that evening, she various ways. For example, the body remembers its missing had expected to menstruate—Menstruation was something organs, as evidenced by the experience of physical pain that everyone was talking about as teenagers. Later, Ronnie lied caused Shai to discover the stump of the uterus in his body. to her friends said she had gotten her period. She bought In addition, Shai has always experienced the bodily secret in sanitary pads and kept them in a cupboard. When her mother his own unusual nature and difference, through his frequent saw them she asked Ronnie why she had them, Ronnie was hospitalizations and through the way in which his doctors embarrassed and explained that if a friend needed a pad, she looked at his body as though it were an object in a museum. would have one. Ronnie lied to decrease the social pressure Thus, even when he was unaware of the contents of the around her, thus participating in the establishment of the secret, it was palpable and real in his life, like a foreign body. bodily secret. Ronnie began to undergo examinations by the gynecolo- gist who treated her older sister with no explanation about Ronnie: “I Once Had Testicles” Is the nature of the tests or the reason for them. She underwent Similar to “I Have Testicles” (October the examinations as part of her routine, asking no questions. 7, 2005, November 21, 2008) After examining her, the gynecologist told her mother that Ronnie could have normal sex—that is, heterosexual sex— Ronnie’s story is very different from Shai’s; they grew up in because she had a vagina. In some cases of CAIS, the vagina different environments, at different socioeconomic levels, is narrow and doctors recommend expanding it with with different cultural values and different intersex condi- surgery. tions. Yet, a similarity exists between them in terms of their Ronnie and her sister each experienced the min-guf pro- embodiment and their bodily experience, which are closely cess alone. Ronnie’s sister underwent surgery at this time to linked to the secrets that surround their bodies. The course of remove her testes. This process was not shared with Ronnie. Ronnie’s life intersects with that of her sister, who is 4 years When Ronnie began to mature, the physical examinations older. Both were born with Complete Androgen Insensitivity were geared toward surgery to remove her gonads. This is Syndrome (CAIS). Although her sister did not participate how she describes the experience: in the current study, her presence was felt in Ronnie’s story, because she experienced the min-guf process and the estab- lishment of the bodily secret first, and Ronnie later went In the summer between eighth and ninth grade, I had surgery. My mother told me to say that it was hernia surgery, and that’s through the same process. This is how Ronnie began her life what I said. . . . I was told that they were removing my residual narrative: ovaries, so I wouldn’t get cancer or something. I didn’t know it was something else. . . . I have scars on my lower abdomen I was twelve, and my older sister was sixteen and hadn’t gotten [from the surgery]. her period, and my parents took her to all kinds of tests because of this matter. Later, they also took me for tests. Everything she Ronnie’s parents lied, concealing the real reason for her went through, I went through, and they didn’t explain why and I didn’t ask too many questions. . . . They told me I had been born surgery; instead of telling her that testicles were being without a uterus and couldn’t have children and I wouldn’t removed, they told her that residual ovaries were being menstruate. They even took the trouble to tell me that studies removed to prevent them from becoming cancerous. Ronnie prove that the girls who have this syndrome are pretty, tall, and told her friends that she had hernia surgery, as her mother not hairy. I remember that I didn’t believe them and thought it asked her to. The scars from her surgery remain on her lower was nice of them to tell me this, but it was clear they had done it abdomen, a sign that her body remembers what happened to to be kind, to make me feel good after the blow they had just it, a mark of its physical history. Following surgery, Ronnie dealt me. began to take synthetic hormones. In this way, through medi- cal treatment and her parents’ cooperation with it, the secret When Ronnie describes the “matter,” and what she calls was established in Ronnie’s body. “this syndrome,” there is a sense of alienation, a certain dis- One day her sister sent her an email with a link to the tance—alienation that I feel as a listener and alienation and Androgene Insensitivity Syndrome (AIS) group in England. distance experienced by Ronnie. The common perception is Ronnie kept the email in a folder and did not open it. When I that androgen insensitivity syndrome produces “beauty”— asked her why, she replied, girls who are pretty, tall, and not hairy. This is how doctors present the characteristics of this physical condition to par- When I saw that in the initials “AIS” the first word was androgen, ents. This myth of “beauty” is also reflected in popular litera- my only familiarity with that word was that it had to do with ture, for example, in the novel Middlesex by Jeffrey someone whose biology and gender are undefined, something Eugenides (2002) and in the media (in one of the episodes of between a man and a woman, and it was very frightening to me. the television series House). . . . I put it in a folder and forgot about it. After about two years Ronnie cannot describe in words what she felt after her . . . I told my friend, a doctor. . . . I told her what I tell everyone, parents told her she would not menstruate or bear children. and then she asked me, “So when did have your testicles Meoded Danon 9 removed?” and I felt like I’d been punched in the stomach, just knew she was a woman and not a man in the existing social– ashamed that I didn’t know. So I told her at age fourteen, as if I gender dichotomy. suddenly had made all the connections to the surgery I had had Ronnie, like Shai, experienced the physical dialectic. This then. Then she left, and I went to the website that my sister had took place during the surrogacy process, 3 years after our first sent me . . . and only then did everything become clear to me. interview. Ronnie told me that she had married her partner and they had begun the surrogacy process, during which she was Ronnie experienced the moment of the secret’s revelation required to undergo general medical examinations and provide in her body as a punch in the stomach, a feeling directly con- medical documentation confirming her inability to conceive: nected to her abdominal surgery, which the body remembers through a scar. Ronnie immediately made the connection When I do an ultrasound there is something comfortable in the between her surgery at 14 and the removal of her testes. The doctor just writing “uterus and ovaries not detected” and not secret, now revealed, that her body had contained testes, and “but testicles were detected” . . . because there is still a not damaged ovaries, frightened and deeply troubled Ronnie, dissonance between the self-concept, the gender I chose, and the fact that I once had testicles. It’s a dissonance that needs to be because the organ she most associated with masculinity had dealt with, and this solves the problem of the need to deal with been part of her body. She explains, it. It doesn’t completely solve it because, bottom line, “I once had” is similar to “I have,” but it still allows me to deal with it The subject of the testicles was the most problematic for me then and explain myself to myself and not explain it to the ultrasound and has been ever since. I didn’t tell my boyfriend about the technician, let’s say. testes, but only that I don’t have a uterus, and he took it with indifference. I don’t want to tell him about the testicles, because Ronnie’s bodily secret continues to exist, even when there I think this would have been a sexual turn-off for him. are no testicles in her body. Ronnie says that she deals with the secret by keeping it to herself. Thus, she maintains the After uncovering the secret, Ronnie began to explore her dissonance—the bodily dialectic. In retrospect, Ronnie physical condition; she read studies and wrote an academic explains that the secret has affected her life, her social abili- paper on the different forms of AIS, which she gave to her ties, her interpersonal relations, and her trust in others. sister and parents to read. Ronnie also recognizes the bene- The min-guf process that Ronnie underwent created a fits of her physical condition, such as being tall and not being physical secret that, in turn, produced a dialectic in her life hairy. Ronnie expresses her discomfort with the term between her body and her gender. The bodily secret here is “intersex”: actually a family secret, shared by her older sister, their par- ents, and their doctors. The secret no longer depends on the I don’t think of myself as intersex. . . . I don’t have any problem material physical characteristics of the intersexed body; even with my sex. I also think it has to do with the form of the syndrome that one has. The physical appearance of those with after Ronnie’s testes were removed, she experienced the ten- complete AIS is that of a woman and it’s different from other sion produced by the bodily secret. The removal of the testes syndromes, where there are elements of both sexes. . . . Despite did not produce a blurring or disappearance of intersexed my condition, it’s clear to me that I’m a woman; my sex was corporeality, but rather strengthened it and preserved it as a confused, but my gender was not. I will elaborate. Yes, I had bodily secret. The body is the secret, but at the same time it problems when I was younger. I was flat-chested and had short also undermines the secret. The feeling that Ronnie describes, hair, so people would mistake me for a boy and I was very the self-dissonance, threatens to reveal the secret. In other insulted. My hands are not feminine either, but I cannot imagine words, on one hand, the physical secret, concealing the inter- living life as a man. sexed physicality, protects Ronnie from the threat and the response to the disturbing physicality associated with mascu- Ronnie’s “physical reality” is dialectical, expressed in the linity. But, on the other hand, the body cannot conceal the tension between her internal corporeality and the external secret, and leaves the physical scars of the min-guf process. corporeality resulting from her “syndrome.” The dialectic is There are also emotional scars that are experienced physi- between her internal “masculinity” (testes, XY46 sex chro- cally, for example, the sense that the testicles exist even in mosomes) and phenotypical femaleness (female external their absence. The secret provides power, presence, and exis- genitalia). On one hand, Ronnie says that her corporeality, tence to the particular intersexual corporeality. her outer appearance as a woman with CAIS, is that of a woman, unlike what outer appearance may be in other physi- cal conditions of intersexuality. On the other hand, she says Or: “I Was Hooked Up to a that her physicality as a child made people mistakenly think Respirator” (November 6, 2009, she was a boy, and that she had been offended by this. December 25, 2009) Similarly, she adds that her “sex” is confused, but her “gen- Or, 28, is an academic. She is interested in researching the der” is stable, clear, and decidedly feminine. When I asked genetics of her physical condition—congenital adrenal Ronnie to describe what it means to her to “feel like a hyperplasia (CAH). Or is active in the CAH community on a woman,” she responded that she had no idea, but that she still 10 SAGE Open well-known Internet site and often provides biomedical remember I asked why they hadn’t removed my uterus dur- information to parents of intersexed children and to inter- ing the first operation.” sexed people with CAH. She begins with the story of her Or was aware of her corporeality early on. Her response birth: to her mother’s news about the impending surgery can be seen as an attempt to resist ordinary life, a uterus, fertility, I was born prematurely, in the eighth month, and it was a breech the kind of life her mother wishes for her. Or traveled to the birth. I’ve always been kind of contrary. They noticed something United States with her mother to undergo the second opera- strange and my mother told me that there was a doctor who . . . tion. She does not remember pain, but recalls that she recov- recognized the syndrome. Actually I was, I am, a classically ered quickly and was released early. After surgery, she had to difficult case. The term is CAH due to 21OH deficiencies, which preserve the vagina in her body and to use different expand- means CAH due to damage to enzyme 21 accompanied by the ers to widen it. As this was very painful for Or and for her loss of salts. I have all the problems. Aside from that, he mother, who tried to help her, in time they stopped. After the recognized that I did not look normal and so they monitored me second surgery, Or increasingly shut out her friends. When I closely, so I did not become dehydrated. asked her why she thinks she isolated herself, she replied, Immediately after birth, Or underwent a series of tests to The main reason, I think, is that when I was born the doctors monitor levels of hormones and salts in her body. Her exter- advised my parents not to tell. They told the grandparents, aunts nal genitals included an “enlarged clitoris” and closed labia, and uncles, and that was it. I mean, they knew what I had, but it and this situation brought about the initiation of the min-guf didn’t come up. . . . The parents didn’t tell. You understand, they process and diagnostic tests to determine her physical condi- didn’t talk about it. My siblings don’t know. tion. She and her parents were referred to the best hospital available at the time—Johns Hopkins University, which spe- At age 17, Or had a third operation and later an additional cialized in these surgeries. She recalls, one to open and expand the vagina, which her body had closed over time. The purpose of the operations was to By age 5, I actually already realized that I was different. I didn’t encourage her sexuality, especially the act of penetration. Or go to change clothes in the locker room at the pool. At five I claims that, although she is not in a relationship and does not underwent the first surgery. And then they arranged the external want to be in one, she still preserves the opening of the form [of my genitals], arranged what needed to be arranged. vagina because it is threatening to close again. Or’s min-guf process and the establishment of her physi- Or reveals here that at an early age, she had become aware cal secret caused her alienation and self-hatred. She does not of the physical differences reflected in the appearance of her like to be photographed or to see herself in pictures, and is external genitals. She describes the difference she sensed at a very young age when she saw that the women in the locker revolted by psychologists. Her sense of alienation is increased room did not have the same organ as she did. Or explains and reproduced both by the expansion of her vagina and the how she experienced her difference: “From the day I first operations she underwent and through her bodily secret, knew who I was, I knew somehow that I was not normal. To which is not spoken of. This is a kind of vicious circle—a have surgery at age five pretty much establishes this fact.” bodily secret that is not mentioned, but which controls her Or’s statement attests to the fact that genital surgeries life and threatens its existence. themselves increase the sense of difference in intersexed Or attempted to escape this vicious circle. When she was children and do not facilitate their adaptation or sense of drafted into the army at age 18, she decided to stop taking the social belonging, as biomedical experts claim. Or does not dexamethasone (a type of cortisone) she had taken all her remember many details of the meeting with the psychologist life. Or decided to get, as she says, “off the respirator” to at the clinic before her surgery, but she recalls that her mother which she had been attached since birth, which meant break- talked with the psychologist, and she mainly played with ing free from her bodily secret. When her doctor called her in toys she defines as “boys’ toys”—tractors and trucks. During for a blood test, Or told her that she had stopped taking the her childhood, Or remembers, she had to take medications, pills. The doctor informed her parents at once, and they which increased her sense of difference and alienation asked her to resume taking the medication. Thus, the doctor regarding her corporeality. violated medical confidentiality, and Or claims that if she At 12, Or underwent a second operation to continue the had filed a complaint, the doctor would have lost her license. construction of her external genitals. While the first surgery But she did not file a complaint. The physical effects of stop- constructed the outer labia, corrected the urethra, and reduced ping her medication included fatigue, depression, and facial the size of the clitoris, the second was aimed at constructing hair growth. a vagina and allowing the passage of menstrual fluid from Or and her parents conceal the secret from her siblings, the cervix. Or reports her recollection of learning from her and thus the physical secret becomes a family secret that cre- mother about the second surgery: “I remember she explained ates a boundary between those who share it and those who do that I had to have surgery so I could lead a normal life. I not within the family system. The secret sabotages family Meoded Danon 11 relationships and communication between family members. internal genitalia, and the side effects of synthetic hormones, The relationship between Or and her siblings and her parents producing a kind of dialectical “corporeal realism” (Shilling, is cool and distant. 2005) experienced by the intersexed subject, according to When I asked Or about love and intimate relationships in which his or her body simultaneously exists/does not exist, is her life, she explained that she has never experienced love present/absent, is hidden/visible. This dialectical corporeal that it is impossible for her: realism produces a vicious circle; when intersexed subjects reveal the physical secret and become aware of the differ- How can I tell someone I was born different, that what you see ence between their bodies and social sex and gender norms, now is the result of a successful plastic surgeon, more or less? I they become its agents and reproduce the rules that conceal have no idea what I look like compared to someone normal. I it. Thus, Or, Shai, and Ronnie conceal their physical secrets would argue that the work they did wasn’t one hundred percent from their siblings and other relatives, just as individuals perfect, that I’m quite different. I don’t know, I mean they forgot with conditions such as CAIS, ovotestis, or gonadal digene- to tattoo an orientation map on my genitals [laughs]. sis may conceal their chromosomal and gonadal characteris- tics, or CAH individuals conceal their presurgery genital Or asks how she can develop a relationship with another characteristics, from intimate partners. But the body objects person when she is unable to accept herself. She has a great and responds in its own particular terms, a situation that cre- deal of anger that erupts dramatically when someone annoys ates tension and conflict with the rules of concealment and her. Or’s anger is directed at herself, and she often sinks into often leads to a continuation of the “normalization” of the depression and talks to no one. body into a particular sexual ideal. And yet, the more the Or’s most dominant conflict is the struggle between the bodily secret continues to operate in the lives of the inter- body and the secret. Throughout her life, the secret was sexed, the longer they try to conceal it from those around established in her body with the aim of concealing the body them and from themselves, the more they experience alien- and its physical history. It thus undermines and suppresses ation from the body, alienation caused by the body and expe- the particular experience of the body, its appearance, its rienced in the body. The bodily secret disconnects and being in the world, and particularly its interaction with its separates body and mind, and distinguishes between them as environment and with others. Throughout her life, Or learned well as between consciousness and being and between soci- that her body was a secret, something different, and therefore ety and its norms and the material body. Bodily secrets pro- everyone was concealing it. The medications she takes, the duce a constant conflict that makes the existence of embodied surgeries she has undergone, and keeping the secret all reaf- subjects impossible, as they are caught between conflicting firm and intensify her difficult feelings. The bodily secret worlds. The only way to escape the vicious circle in which poisons her existence and causes conflicts and alienation intersexed people are imprisoned is to end the paradoxical from herself and others. attempt to conceal the intersexed body in the public space in general and from intersexed subjects in particular. That is, the surgical practices and the secrecy that surround them, Conclusion whose goal is to reproduce some kind of typical sexual/gen- der ideal and not necessarily to save lives or prevent physical The min-guf process of intersexed people, the surgical, hor- danger (except in rare cases in which gonads become cancer- monal practices, the deliberate concealment of the intersexed ous), do not ensure the welfare and happiness of intersexed body, and the attempt to make it “disappear” all establish a subjects. On the contrary, they endanger their lives and bodily secret. The secret is embodied as an organic feature undermine their social, familial, and intimate relationships. through treatment practices. Over time, it becomes a foreign The intersexed body has existed since the dawn of history. object that undermines the body’s orientation and existence. Attempts to make it disappear or to conceal it are damaging The bodily secret is a force that surrounds the body and pro- not only to intersexed people and their families but also to duces stress, frustration, and the alienation of intersexed sub- biomedical science, which, instead of attempting to normal- jects from their bodies. Physical secrets, like other toxic and ize intersexed bodies, could learn much from them about the dangerous secrets, cause the subjects who experience them different ways in which the human body develops and the to occupy opposing worlds. On one hand, intersexed subjects many challenges that it presents. live in a world run and disciplined by the rules of the secret and its agents, a world whose social, gender, and sexual Declaration of Conflicting Interests norms are reproduced, filed under an imaginary sexual/gen- der ideal. On the other hand, they experience in their bodies The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. a world that opposes both the rules of the secret’s game and the secrecy and social norms regarding sex/gender. The body Funding does not “know” how to conceal the secret and treats it like a “foreign body,” causing tension and unease. Thus, it reveals The author(s) received no financial support for the research and/or the secret through pain, inflammation, scarring, residual authorship of this article. 12 SAGE Open Notes 9. I interviewed Shai’s endocrinologist to get a historical per- spective on treatment methods in cases of the intersexed in 1. I understood the difference between privacy and secrecy at Israel. Without being asked, the doctor began to tell me about a later stage of my research. While privacy and secrecy are a unique case that he had treated and I understood that he was similar in that they both include an element of concealment, talking about Shai. researchers who differentiate between these two concepts 10. This syndrome is attributed to people with XY46 sex chro- claim that privacy is legitimate and ethical because every per- mosomes. There are two forms of “androgen insensitivity son has a right to protect his privacy as long as it does not syndrome”—complete and partial. In the complete form, the harm others. While secrets and secrecy are supposed to be body does not respond to androgens and does not develop as concealed, this concealment is directed at people from whom male. The gonads—testicles—are undeveloped and remain in the secret is concealed, to whose lives the secret is connected. the groin (in some cases creating a hernia) or abdomen. The When information connected to the life, emotions, or body of phenotype appears “female,” with female external genitalia— another person is involved, the secret is unethical and damages external labia, vagina, and clitoris. Frequency is 1 in 13,000 to the lives of others, from whom it is kept and to whose lives it 20,000 births. In the partial form, the body responds to andro- is connected (Bok, 1984). genic hormones partially, testes develop, and the phenotype 2. This traditional protocol was also called the “Money Protocol” is integrated—“ambiguous genitalia.” The older term for AIS (Davidson, 2009, p. 63). was “testicular feminization syndrome” (Harper, 2007). 3. Hermaphroditism was the traditional clinical term for inter- 11. For example, Ronnie told me about a woman with Complete sexed patients and was replaced in 2005, following the Chicago Androgen Insensitivity Syndrome (CAIS) whom she met, who conference, to “Disorder of Sex Development” (DSD). told her she had vaginismus, a condition in which the vagina is 4. Intersex Society of North America (ISNA) fell apart follow- tight or shrinks during intercourse (with penetration), and that ing its support of the term “DSD” and Chase, now called Bo it caused her pain and discomfort. Laurent, became the head of Accord Alliance group, which is devoted to supporting research and clinical cooperation with References biomedical professionals. 5. Currently, various intersex and interdisciplinary groups are Audi, L. (2014). Past experiences of adults with Disorder of Sex acting to raise awareness of intersexed peoples’ rights and to Development. Karger: Medical and scientific publishers, 27, change medical treatment. Among these are the Organization 138-148. of Intersex International (OII), European Network for Bok, S. (1984). Secrets: On the ethics of concealment and revela- PsychSocial studies in Intersex/DSD (EUROPSI), Accord tion. New York, NY: Vintage Books. Alliance, and others. Butler, J. (1990). Gender trouble: Feminism and the subversion of 6. Joan Fujimura (2006) analyzed the protocols of genetic stud- identity. New York, NY: Routledge. ies and the attempt of science to determine which genes cause Butler, J. (1993). Bodies that matter: On the discursive limits of the formation of female and male sex. It was found that sci- “sex.” New York, NY: Routledge. ence is deliberately ignoring findings that are inconsistent with Butler, J. (2004). Undoing gender. New York, NY: Routledge. the dual sexual perception. For example, while scientists sug- Charmaz, K. (2006). Constructing grounded theory: A practical gest that SRY is the gene that causes the formation of male guide through qualitative analysis. London, England: SAGE. characteristics such as testicles, they ignored a fertile female Chase, C. (1998). Hermaphrodites with attitude: Mapping the emer- mouse with an XX chromosome bearing the SRY gene, pos- gence of intersex political activism. GLQ: A Journal of Lesbian sibly because they could not explain this finding. and Gay Studies, 4, 189-211. 7. Can we separate the human body from social forces, language, Chase, C. (2003). What is the agenda of the intersex patient advo- and norms? Examining and researching human bodies, the cacy movement? The Endocrinologist, 13, 240-242. medical discourse makes no separation between sex and gen- Corbin, J. M., & Strauss, A. L. (1990). Grounded theory research: der norms. How can we capture the gender category and its Procedures, canons, and evaluative criteria. Qualitative manifestation in the sexual body? Parents use gendered lan- Sociology, 13, 3-21. guage with their babies, but could they really predict that their Cote, A. (2000). Telling the truth? Disclosure, therapeutic privilege babies will grow up to be a sis-gender person? Where does and intersexuality in children. Health Law Journal, 8, 199-216. sex (body) begin and gender (socialization) end? Intersexed Davidson, R. (2009). DSD debates: Social movement organiza- people become “intersexed” immediately after integrating tions’ framing disputes surrounding the term Disorder of Sex with the biosocial gaze, which characterizes and defines them Development. Liminalis: Journal for Sex/Gender Emancipation according to normative sex/gender frames. I would like to and Resistance, 60-80. thank the reviewers for their insightful comments on this point. Davis, G. (2011). “DSD is perfectly fine term”: Reasserting medical 8. This is an outdated medical term that indicates a situation in authority through a shift in intersex terminology. In D. Hutson which the internal sex organs are “female,” and include uterus, & P. J. McGann (Eds.), Sociology of diagnosis (pp. 155-182). ovaries, and fallopian tubes, while the external physical char- New York, NY: Emerald. acteristics (phenotype) are male and the external genitals Dreger, D. A. (Ed.). (1999). Intersex in the age of ethics. appear “male.” In Shai’s case, this took the form of a penis Hagerstown, MD: University Publishing Group. with a “normative” urethral opening at the tip of the penis and Eugenides, J. (2002). Middlesex. New York, NY: Picador. not elsewhere as happens in similar conditions (adrenal hyper- Fausto-Sterling, A. (1993). The five sexes: Why male and female plasia) and the structure of a scrotum, but no testes. are not enough. Sciences, 33(2), 20-25. Meoded Danon 13 Fausto-Sterling, A. (2000). Sexing the body: Gender politics and the Kessler, S. J. (1998). Lessons from the intersexed. New Brunswick, construction of human sexuality. New York, NY: Basic Books. NJ: Rutgers University Press. Feder, E. (2002). Doctor’s orders: Parents and intersexed children. Lane, D. J., & Wegner, D. M. (1995). The cognitive consequences In E. F. Kittay & E. K. Feder (Eds.), Subject of care: Feminist of secrecy. Journal of Personality and Social Psychology, 69, perspectives on dependency (pp. 294-320). Boston, MA: 237-253. Rowman & Littlefield. Lee, P. A., Christopher, P. H., Faisal, S. A., & Leuan, A. H. (2006). Feder, E. (2006). In their best interest: Parents’ experience of atypi- Consensus statement on management of intersex disorders. cal genitalia. In E. Parens (Ed.), Surgically shaping children: Pediatrics, 18, 488-500. Lev, A. I. (2006). Intersexuality in the family: An unacknowledged Technology, ethics, and the pursuit of normality (pp. 89-210). trauma. Journal of Gay and Lesbian Psychotherapy, 10(2), 27- Baltimore, MD: The Johns Hopkins University Press. Ford, K. (2000). “First do no harm”—The fiction of legal parental Meoded Danon, L.(2012). Intersexuality and the MinGuf process: consent to genital-normalizing surgery of intersexed infants. the paradox of the sex development in the body. Doctoral Yale Law & Policy Review, 19, 469-488. Dissertation, Ben-Gurion University of the Negev: Israel. Foucault, M. (1973). The birth of clinic: An archeology of medical Meoded Danon, L.(2014).What kind of Body? The affects of the perception. New York, NY: Pantheon Books. Sexing Process on Intersexed Peoles’ Lives.Tel-Aviv: Resling. Foucault, M. (1990). The history of sexuality. New York, NY: Merleau-Ponty, M. (1978). Phenomenology of perception. London, Vintage. England: Routledge. Foucault, M. (1995). Discipline and punishment: The birth of the Money, J. (1955). Hermaphroditism, gender and precocity in hyper- prison. New York, NY: Vintage. adrenocorticism: Psychologic findings. Bulletin of the Johns Foucault, M. (2006). Madness and civilization: A history of insanity Hopkins Hospital, 96, 253-264. in the age of reason. London, England: Routledge. Money, J., Hampson, J., & Hampson, J. (1955). Hermaphroditism: Fujimura, J. (2006). Sex genes: A critical sociomaterial approach to Recommendations Concerning assignment of sex, change the politics and molecular genetics of sex determination. Signs, of sex, and psychologic management. Bulletin of the Johns 32(1), 49-82. Hopkins Hospital, 97, 284-300. Ganka, D., Axelrad, M. E., Brandt, M. L., Crabtree, E., Dietrich, J. Money, J., Hampson, J., & Hampson, J. (1957). Imprinting and E., French, S., . . . Sutton, V. R. (2010). Consensus in guide- the establishment of gender role. Neurology & Psychiatry, 77, lines for evaluating of DSD by the Texas children’s hospital 333-336. multidisciplinary gender medicine team. International Journal Morland, I. (2001). Management of intersex. The Lancet, 358, of Pediatric Endocrinology, 2010, 1-17. 2085.. Goffman, E. (1963). Stigma: Notes on the management of spoiled Morland, I. (2009). What can queer theory do for intersex? GLQ: A identity. Englewood Cliffs, NJ: Prentice Hall. Journal of Lesbian and Gay Studies, 15, 285-312. Harper, C. (2007). Intersex. Oxford, UK: Berg. Preves, S. E. (1998). For the sake of the children: Destigmatizing Hillman, T. (2008). Intersex: For lack of a better word. San intersexuality. Journal of Clinical Ethics, 9, 411-420. Francisco, CA: Manic D Press. Preves, S. E. (2002). Sexing the intersexed: An analysis of sociocul- Hird, M. (2004). Sex, gender and science. New York, NY: Palgrave tural responses to intersexuality. Signs, 27, 523-556. Macmillan. Preves, S. E. (2003). Intersex and identity: The contested self. New Holmes, M. (2002). Rethinking the meaning and management of Brunswick, NJ: Rutgers University Press. intersexuality. Sexualities, 5(2), 159-180. Shilling, C. (2005). The body in culture, technology and society. Holmes, M. (2008). Intersex: A perilous difference. Selinsgrove, Thousand Oaks, CA: SAGE. PA: Susquehanna University Press. Simmel, G. (1906). The sociology of secrecy and secret societies. Imber-Black, E. (1998). The secret life of families. New York, NY: American Journal of Sociology, 11, 441-498. Bantam Books. Sutton, E. J., Jessica, Y., Aideen, M., Carolyn, A. B., Sarah, E. G., Karkazis, K. (2008). Fixing sex: Intersex, medical authority, and & Barbara, B. B. (2006). Truth-telling and Turner syndrome: lived experience. Durham, NC: Duke University Press. The importance of diagnostic disclosure. Journal of Pediatrics, Karpel, M. A. (1980). Family secrets. Family Process, 19, 295-306. 148, 102-107. Kerry, S. (2008). Are you a boy or a girl? Intersex and genders: Contesting the uncontested: A comparative analysis between Author Biography the status of intersex in Australia and the United States of America. Saarbrücken, Germany: VDM Verlag Dr. Muller Limor Meoded Danon is a lecturer at Ben-Gurion University of Aktiengesellschaft. the Negev and Eilat Campus in Israel, her fields of interest and Kessler, S. J. (1990). The medical construction of gender: Case research are the sociology of the body, the sociology of knowledge, management of intersex infants. Signs, 16(1), 3-26. queer studies and phenomenology. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png SAGE Open SAGE

The Body/Secret Dynamic: Life Experiences of Intersexed People in Israel

Danon, Limor Meoded
SAGE Open , Volume 5 (2): 1 – Apr 10, 2015
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Abstract

Intersexed subjects experience their bodies through the repercussions of treatment policies implemented in their bodies at birth and throughout their lives. Secrets and secrecy comprise a major element of the treatment policy toward intersexed subjects in Israel and act as a disciplining and normalizing force in the life experience of intersexed subjects. This article presents case studies of intersexed adults, subjects through whom we can learn about both historical and contemporary treatment policy toward intersexed people as well as about the perpetual conflict between the particular corporeal existence of individuals and the experience of the secret and secrecy in their lives. The purpose of this article is to shed light on the dynamics that exist between the secret and intersexed bodies and the paradoxical consequences of body/secret relations. Keywords intersexed people, body, secret, min-guf process, Israel examined the ways in which the secret is a significant part of Introduction the medical treatment of intersexed people in Israel and other I have a secret, I have a secret. [cries] We don’t talk about it. . . . countries (Audi, 2014; Karkazis, 2008; Kerry, 2008) and It’s not diabetes where you need regular treatment, and it’s not explored the ways in which the secret is reproduced by par- TERT syndrome or any other known syndrome. The very fact ents of intersexed children and becomes part of family lives. that it’s not spoken about means that I have a secret—a secret In this article, I focus on the embodied particular experi- I’m aware of because it wasn’t repaired from birth and I had to ence of the secret in the narratives of three intersexed adults. live on pills. I’m telling you that from birth they hooked me up I chose to focus on only three narratives to explore in depth to a “respirator” that I can only be disconnected from when I’m 18. (Or, November 6, 2009) each individual’s experience of living with an intersexed body and the secret that surrounds it. While every participant Hearing this testimony represented a foundational, in this study experienced the powerful secrecy that surrounds insightful moment for me as a person who has been research- their bodies and is manifested in the complexity of the body/ ing the intersexed body for the past 7 years. This was the secret relationship, the narratives of these three participants moment at which I first understood the significance and pro- in particular highlight the complexity of living with the found power of the secret in the everyday living experience secret and secrecy as well as the practice of body/secrecy in of many intersexed people. I had known that intersexed peo- familial, medical, and personal relations. Hence, I chose to ple were told lies and lived with secrecy (Chase, 1998; Cote, focus on each of these narratives to reveal the particular, 2000; Ford, 2000; Harper, 2007; Holmes, 2002, 2008; unique living experiences that they portray. Preves, 2003), yet, even when for years the secret and secrecy In these narratives, the motifs of secrets and secrecy are surrounding intersexed people made it difficult for me to col- prominent, as they are in narrative studies and other kinds of lect research data and contact intersexed people and parents studies that focus on the life experiences of intersexed peo- of intersexed children and adults in Israel, I accepted this ple. Secrets and secrecy characterize both treatment policies situation as a given, assuming that the phenomenon itself and the behavior of the parents of intersexed people, thus was an extremely private matter, kept within the confines of comprising an integral element in their life stories. Secrets hospitals to maintain patients’ privacy. But when Or cried and explained how the secret controls and damages her social Ben Gurion University, Beer-Sheva, Israel and familial life and how suicidal thoughts ran through her Corresponding Author: head, I realized that I needed to reframe the secret as a force- Limor Meoded Danon, PhD, Ben Gurion University of the Negev, ful social agent that threatens the very being of intersexed Beer-Sheva, P.O.B 653, Israel. people. In my doctoral dissertation Meoded Danon, 2012), I Email: limormdanon@gmail.com This article is distributed under the terms of the Creative Commons Attribution 3.0 License Creative Commons CC BY: (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (http://www.uk.sagepub.com/aboutus/openaccess.htm). 2 SAGE Open and secrecy encourage stigma, shame, low self-esteem, lone- quickly as possible, which would allow “hermaphrodite” liness, lack of trust in others, difficulty in creating intimate children to be socially accepted and unstigmatized. In fact, relationships, and a host of other problems (Feder, 2006; Money et al. (1955) encouraged doctors to “talk frankly” Karkazis, 2008; Kerry, 2008, Meoded Danon, 2012, 2014; with hermaphrodite children, and claimed that “truth is sel- Lev, 2006; Preves, 2003). Paradoxically, treatment policies dom as distressing as the mystery of the unknown” (p. 294). have historically attempted to prevent these negative phe- Theoretically, they argued in their article that “hermaphro- nomena, so they have often attempted to normalize the body dite” children should not be kept in the dark regarding their through surgery and hormones, tailoring it to one of the two physical state, but, unfortunately, we revealed that only four typical sexes/genders: male/female, man/woman. decades later, there is a tremendous gap between their theory The moment of discovering the secret, that is, their par- and the actual realities of intersexed people. ticular “intersex” physical condition and their treatment his- Since the 1990s, much criticism has been voiced against tory, was perceived by intersexed people as a significant, the “Money Protocol,” especially regarding the problematic life-changing event that not only legitimized their emotions connection between gender identity and the “true sex” of both in the past and in the present but also opened many intersexed people. For example, Suzanne Kessler claimed questions and left them with a great deal of anger and frustra- that Money and his colleague evaluated penis size (“a good- tion toward their doctors and parents, who had concealed sized penis”) as the sole condition for raising a newborn as a information from them. Studies of the life experience of boy. Chromosomes and other physiological characteristics intersexed people, such as those of Sharon Preves (2003), were less relevant than penis size, so babies with penises Katrina Karkazis (2008), and Stephen Kerry (2008), have smaller than the ideal of the medical staff, with hypospadias, often related to the intersexed body as a discursive, medical with XY46 sex chromosomes and testes were forced to body, a passive product of biomedical science. Unlike previ- undergo “corrective” genital surgery and raised as girls ous studies, this one aims to demonstrate how the material (Kessler, 1990, pp. 12-13). Anne Fausto-Sterling (1993) intersexed body, like any other human body, is dynamic, and argued in her pioneering article “The Five Sexes: Why Male senses, experiences, and even opposes attempts to normalize and Female Are Not Enough” that the biomedical profes- it in its own unique ways. Moreover, this study describes the sionals at Johns Hopkins disciplined intersexed bodies complex relationship between the body and the secret and according to stereotypical gender norms, instead of seriously reveals how the secret is experienced as a foreign object that and deeply studying the many (at least five) sexes of the the body cannot tolerate. It also interrogates the ways in human body. In the summer of 1993, soon after the publica- which the secret is established in the body and its effects on tion of “The Five Sexes,” Sheryl Chase, an intersexed activ- the embodied subject, and explores what causes intersexed ist, established the Intersex Society of North America people to feel alienation from their lives in general and their (ISNA), the first organized group of intersexed activists. bodies in particular. Chase, like most ISNA members, had been treated and oper- The existence of the intersexed body and the act of keep- ated on according to the “Money protocol,” for 60 years, ing it secret have been linked, in an institutionalized manner, which was internationally recognized and followed. ISNA through the traditional protocol outlined by Johns Hopkins began to voice its criticism of this protocol on the Internet, in Hospital in the 1950s. At the time, John Money and his col- the popular media, and in literature. The writings presented leagues were conducting pioneering clinical and psychologi- in the book Intersex in the Age of Ethics (Dreger, 1999) cal studies on “hermaphroditism,” and were considered the brought to light the living experience of many intersexed leading authorities on the subject. The Johns Hopkins profes- people, revealing that they had grown up unaware of their sionals believed that gender role and gender identity (Gender physical diagnosis and the significance of their physical– R/I) should establish and guide the treatment policy of “her- surgical histories, as their physicians and families had lied maphrodite” children. According to this perception, the core and concealed this information from them, and they had to problem of “hermaphrodite” adults was being assigned to the discover it on their own. For most of them, this discovery “wrong gender,” which caused social alienation, stigma, and was traumatic. They felt that they had been living a lie for psychopathological problems. Hence, they claimed, her- years and were forced to cope alone with the consequences maphrodite children should be assigned a coherent gender both of the surgeries carried out on their bodies, which role as early as possible (no later than 18 months of age), and caused much physical and emotional damage, including lack raised in accordance with it, while those with ambiguous of genital–sexual sensation, and of the revelation of their external genitalia should undergo surgical correction. Money bodily secret. As more studies were published and an increas- and his associates asserted that normal looking external geni- ing number of intersexed people revealed their stories, the tals are more crucial than chromosomes, gonads, and internal secrets and secrecy surrounding their bodies have become and other sexual characteristics for establishing a “normal” known as a familiar feature of the dominant narrative and an gender role/identity (Money, 1955; Money, Hampson, & integral element of traditional treatment policy (Chase, 1998, Hampson, 1955, 1957). The Johns Hopkins medical team 2003; Dreger, 1999; Feder, 2002, 2006; Hillman, 2008; focused on diminishing and concealing bodily ambiguity as Holmes, 2002; Lev, 2006; Morland, 2001, 2009; Preves, Meoded Danon 3 1998, 2002, 2003; Sutton et al., 2006). The Chicago power relations and a heteronormative perception of gender, Conference of 2005, organized by the ISNA and other inter- so its research, gaze, and perception of the body are all fil- sex advocates and biomedical professionals, aimed to change tered through language, through a system of meanings that the traditional and problematic “Money Protocol.” The main mark the body as female-feminine or male-masculine. The changes of the medical treatment concerned clinical and paradox is that the normative sexual order is imaginary; pathological nomenclature, with the term Disorder of Sex physical-sexual reality is not organized into two unambigu- Development (DSD) replacing the old terms “hermaphrodit- ous sexes. Science, in its attempt to characterize or assess the ism” and “intersex conditions” (Lee, Christopher, Faisal, & factors or characteristics of the development of sex in the Leuan, 2006). The new guidelines are more centered on body, repeatedly encounters “undesirable” results in bodies patients and families. Experts advocate sharing information (whether those of mice or people) that challenge its on patients’ physical condition and treatment with parents, assumptions. and the optimal sex/gender of the newborn is determined by In contrast to poststructuralism, which perceives the multidisciplinary teams that consider the best interests of human body as “discursive,” a product of construction and patients and families. Interestingly, these teams do not social power relations, the phenomenological approach to include intersexed subjects who could talk about their expe- the body, established through the work of Maurice Merleau- riences and the consequences of treatment. Other changes Ponty (1978), relates to the “subjective” body, focusing on primarily involve improved biomedical diagnostic technol- corporeal, sensory experience. Merleau-Ponty claims that ogy and better surgical techniques (Ganka et al., 2010). our perceptions, consciousness, knowledge, and understand- Nonetheless, the new DSD guidelines are still motivated by ing of the world are manifested through our own bodies, concealing bodily ambiguity, especially ambiguous external which are situated in the world as the heart is in the organ- genitalia, and assigning “normal” sex/gender to “DSD” chil- ism, breathing life into it, carrying it inside itself, and shap- dren. The bodily autonomy of intersexed children is still in ing our perception and understanding of the world around us. great doubt under the terms of current treatments. In other words, our flesh, our material, sensual body con- Furthermore, the very term DSD, as Davis (2011) claimed, structs our living experience, our being in this world. A phe- “constructs ‘sex’ as a scientific phenomenon” in ways that nomenological approach allows us to analyze the experience maintain biomedical authority over intersexed bodies. of intersexed people through their own feelings, senses, and ways of adjusting to social norms through their own particu- lar bodies. Theorizing Intersexed Bodies and the A secret, like a human body, is difficult to define and Power of the Secret frame theoretically. It is elusive and hard to estimate accord- “Intersexed” bodies include a broad range of physical states ing to any measure, because it is multidimensional and mul- that challenge the significance, components, and develop- tihued. The secret depends greatly on the different contexts ment of the sexual body. They comprise various configura- and social interactions within which it exists. Sissela Bok tions of sex chromosomes and different structures of the notes that the Latin source of the word secrecy (secretum) is external and internal genitalia. Just as the body cannot be secernere, to separate, to create a kind of boundary between defined as male or female in a separate, stand-alone category, the external, those who do not know the contents of the and the one always depends on and is compared with the secret, and the internal, those who conceal it (Bok, 1984). other, so it is impossible to define and diagnose the inter- This word actually implies the kind of internal conflict inher- sexed body except in comparison and in relation to typical ent in all secrets. Evan Imber-Black (1998) described differ- female or male bodies. Male and female are sexes that were ent types of secrets, including positive ones, which strengthen established in the past continue to be established by the bio- interpersonal relationships; negative, toxic ones, which poi- social establishment and are not disconnected from cultural son relationships, limiting our lives and our ability to make biases and heteronormative perceptions of sex, gender, and clear and effective decisions; and dangerous ones, which sexuality. pose immediate physical or emotional danger and can cause Michael Foucault’s (1973, 1990, 1995, 2006) poststructur- damage to others and even lead to suicide (Imber-Black, alist discursive view of the human body, established through 1998). These toxic and dangerous secrets are the ones rele- power relations (especially the biopower of human science) vant to our context of intersexed people, because they poison and the discipline of knowledge, influenced writers such as bodily experience and make the existence and experience of Judith Butler (1990, 1993, 2004), Myra Hird (2004), Anne intersexed people extremely difficult. For Georg Simmel Fausto-Sterling (1993, 2000), and others, who challenge the (1906) and Erving Goffman (1963), secrets and secrecy are normative Western discourse on sex and gender categories. positive and essential in social life, and help to protect us Poststructuralism critiques the notion that sex categories are from stigma and keep us from harm while we interact with natural, claiming that, like other social categories, they are the others. Simmel describes what he calls the dialectic of the result of a discourse based on and formed through power rela- secret, in which, for example, the secret creates boundaries tions. Biomedical science is not disconnected from social and increases diversity among people, but, however, entails 4 SAGE Open the temptation to break down boundaries and blur differ- the moderator of this group, who had been born intersexed ences, especially when it is revealed. On one hand, the secret and would be happy to help. It took me 3 years to find other acts as a protective sheath that gives power to those who intersexed people for my study. After publishing calls for know it, but on the other, it produces the tension and danger participants on various Internet sites and forums, in particu- associated with its revelation (Simmel, 1906). Unlike lar endocrinology, parenting, and fertility forums, I eventu- Simmel, Bok (1984) claimed that holders of secrets experi- ally made contact with 11 intersexed adults and 7 parents of ence negative tensions and conflicts that are embodied in intersexed children and adults. All of the names of the par- everything they do. ticipants have been changed to maintain their anonymity, and The dynamics of power can be destructive, as Mark each of the participants signed a consent form, which Karpel (1980) explained with regard to family secrets, claim- described the purpose of the research, their right to stop and ing that holders of secrets have a sort of “nuclear bomb” that leave the study at any time, their right to secrecy and ano- is saved for later use, and the only way to be saved from the nymity, and my contact information, including phone num- cruel secret and its destructive repercussions is to reveal it (p. ber and email address. All the participants chose the locations 296). In a more particular, practical, embodied way, cogni- and times of their interviews, to ensure a relaxed and pleas- tive researchers such as Julie Lane and Daniel Wegner (1995) ant atmosphere. With seven of the intersexed adults, I con- describe the difficulty of keeping a secret, explaining how ducted follow-up interviews to learn more about the changes much energy and effort we need to expend to manage our in their lives and to examine many aspects and themes that thoughts, our behavior, and especially our body language were absent in the first interview. During the study, I realized when keeping a secret. Paradoxically, the more we try to that the secret and secrecy were integral parts of the treat- conceal it, the more we reveal the existence of the secret, ment policy and the life experience of intersexed people, so I because techniques for discovering secrets improve over played a role in keeping their secrets. I had to build their trust time and constantly threaten the shell of secrecy, and also in me and provide a comfortable and safe space in which because our own bodies struggle with the secret. To theorize they could expose their lives to me. To foster their trust, dur- the relationship between intersexed bodies and the power of ing the interviews I informed all the participants about the the secret, I embrace both the poststructuralist and the phe- various stages of the study, its purpose, and what I had nomenological approaches to the body and demonstrate the learned so far. tension that exists between them. While these two approaches During the research process, as I conducted the interviews differ from one another, combining them provides a theoreti- and analyzed my findings, I used the stages and ideas of cal perspective that focuses on the phenomenology of social grounded theory (Charmaz, 2006; Corbin & Strauss, 1990). power that describes how the subjective body experiences Grounded theory makes it possible to focus on the dynamics the power exerted upon it through the agents of social power and changes of the research field, and data from the field in general and the power of the secret in particular. This form the core of the theory. The processes of sampling and approach corresponds with that of Chris Shilling (2005), finding participants were actually part of the fundamental who coined the term “corporeal realism” to describe both the theme of this research. Only after several interviews with connection between body and society and the distinction intersexed people did I understand that the reason for the between them. Shilling’s approach ignores neither the estab- great difficulty involved in finding intersexed people in lished social forces, their influence on the experience of the Israel was the forceful social agent of the secret. In contrast body, nor the body’s unique power, development, and mate- to the public activism of intersex support groups in North rial traits. Therefore, this article adopts Shilling’s perspec- America, the United Kingdom, Germany, and other coun- tive, and both offer an analysis of the power relations that tries, in Israel this group and intersexuality in general are discipline the body, in our case the intersexed body, and con- shrouded in secrecy. There are few participants, not because sider the particular bodily experience of individuals and their of the number of intersexed people in Israel, but because the reactions to social power relations. secret surrounding intersexed bodies is reproduced and man- ifested beyond hospital walls, assimilated into and practiced in everyday social interaction. There are very few (closed) Method and Secrecy group meetings during the year, and there is no critical activ- This article is part of a comprehensive study conducted in ity that challenges the biomedical discourse. As in other Israel between 2005 and 2012. It examined the attitude and Western countries, the biomedical system in Israel is authori- treatment of intersexed people and the life experience of tative and asserts its power over intersexed people. intersexed adults. It included 22 semistructured interviews The term I coined to describe the whole treatment process with biomedical and other professionals in Israel. The most of intersexed people is “the min-guf process” (Meoded difficult task was to reach intersexed people. Fortunately, a Danon, 2012). Min in Hebrew means sex, kind, or type. Guf support group for intersexed people began to operate at the means body. My term, min-guf, implies both the separation same time that I started my research). One of the endocri- (the human body is more than the sum of its sexual organs) nologists gave me their brochure and suggested I speak with and the connection (intersexed bodies treated by the medical Meoded Danon 5 establishment as unfixed sexual bodies) between sex and attempts to obtain them. Before I introduce the contents of body. In English, it could be understood as “the sexing pro- the document, let us connect to Shai’s experience of child- cess” or the sexual transformation of the body. I chose this hood and adolescence: term to focus on the sex category and its various manifesta- I always felt unusual, different, let’s say, from infancy, but I tions in the human body and on the bodily consequences of didn’t understand why. I looked like a girl. . . . I was in the medical treatment. Rather than considering the gender cate- hospital all the time, sometimes for long periods, which gory as the main frame for normalizing and disciplining automatically makes you feel different. . . . To the outside world intersexed people, I claim that sex and gender categories, I showed that I was a boy in an extreme way, being the epitome much like the body and society (sex–body/gender–society), of what a bad boy was and pushing this to the limit, because I are intimately integrated and historically manifested in one felt different. . . . For example, from a very young age I felt another; that there is no actual, clear line between them. The attracted to boys, but I realized that it was forbidden, that you stages of the min-guf process that intersexed people undergo were not allowed to talk about it and no one should know. I used throughout their lives embody the blurring of the boundaries to play secretly with dolls. I loved playing with dolls. between sex/gender and body/society. These stages include diagnosing the sexual characteristics of the body, shaping the Social responses to Shai’s appearance sometimes led peo- body according to one of two typical sexes (female or male), ple to mistake him for a girl and treat him like one, which and performing clinical follow-up of the development of the caused him frustration, pain, and a counterreaction that man- body according to its new conditions. The secret is an insepa- ifested itself in a radicalization of his “boy” behavior. Thus, rable part of the min-guf process, as I will describe in the his behavior toward the world was extreme, extroverted, and following three case studies of intersexed adults. Each of interpreted by him and those around him as “boyish,” in con- these stories presents a unique example of the problematic trast to his behavior in his own world, without peer pressure, and paradoxical living experience engendered by the min-guf where he could express his feelings and desires. His physical process, which aims to conceal intersexed bodies. Despite appearance as a boy–girl caused a contradiction, a dialectic the fact that the experiences described in these stories took between his inner world and the outside world, as he explains, place decades ago, and biomedical technology in many countries, including Israel, has changed considerably in the You have to understand that all my life I’ve simply been acting, meantime, the secrets and secrecy surrounding intersexed and I’m a very, very honest person, so it always bothered me that I had to act. . . . Outside, I looked different. Even today, when bodies still have not changed and continue to exist alongside everyone knows me, they call me “Shai, a man with balls.” In urgent physical intervention at a very early age. point of fact, I have no balls at all [laughs], “Shai with the ostrich Through the stories of the intersexed subjects of this eggs” everyone calls me. study, I will explore the ways in which the secret is estab- lished in the body and examine the dynamics of the secret in Shai was unaware of the cause of the hospitalizations and each particular, embodied subject’s life. It is important to his physical characteristics, but he understood his body as emphasize that these stories are not intended to reflect the “sick.” The third important issue in the context of Shai’s life experience of all intersexed people; on the contrary, they sense of difference is his sexuality and attraction to boys, aim to expose the subjective embodied experience of indi- which was perceived as forbidden in his social environment vidual subjects to emphasize the particular struggles with the and never spoken of. Thus, Shai learned to conceal his sexu- social forces that act on each body. Bodily particularity ality and keep it secret. informs us, casting doubt on the existence of any universal or Secondary sex characteristics, the growth of the penis and unisexual physicality. pubic hair, appeared in Shai’s body at a very young age (5-6), and he was ashamed of them. His communication with his Shai: “A Hospital Child” (August 22, parents was minimal, and he did not ask questions about his physical condition or share with them the physical changes 2008) he was undergoing. This surprised me because parents are Shai was born in Israel in 1955. Despite his age, his body usually aware of physical changes in their children’s bodies, looks like that of a young boy. Large green eyes illuminate but Shai claims that he learned to be independent at a young his face, his hands and feet are small, and he is short. At the age, to shower alone, and take care of his own needs. beginning of our meeting, Shai showed me a 1958 medical During his childhood hospitalizations, he felt that his document that described his physical diagnosis and the deci- body was perceived by doctors as something rare, but he was sions his doctors made about his body. This is the only medi- not sure why: cal document Shai has obtained from his own medical file. Shai does not know about everything that happened to his You’re a little kid and all day they strip you and dress you and body during his childhood and is interested in reading his look at you; that’s how it was. I understood that mine was a rare, medical file, but the hospital where he was treated is conceal- special case, so they all wanted to see, they all wanted to touch, ing his records, despite his legal right to see them and his that’s how it was. Just like an exhibit in a museum. 6 SAGE Open Despite Shai’s otherwise excellent memory, his recollec- conditions in Israel at the time and the biosocial perceptions tion of the years when he was hospitalized has been erased. of Shai’s physicians. The document notes the following: During these years, a number of surgeries were performed on his body, including one to remove his uterus, ovaries, and Empty right scrotum. On the left side a small mass can be felt, fallopian tubes. large penis, uterus, ovaries are present. In conclusion, the child By the time he was 13, Shai’s body had developed in is genetically female, gonadal sex female with completely male accordance with its material terms (due to increased andro- external genitals, the penis is large, urethral tube inside the penis, a well-structured but empty scrotum. Regarding the gen secretion, he underwent puberty very early, but from age child’s future, of course he will have to live as a male, and this is 13, he stopped growing and remained quite short). Each due to the following: the external genitalia are completely male. month, Shai would arrive at the hospital for monitoring. He Constructing a proper vagina to allow a normal sex life as a describes how the doctor treated him like an object, without female is a complicated and difficult thing, and the results are asking how he felt. He would ask him to strip and check the doubtful. The condition of the ovaries cannot be determined length of his bones, limbs, and penis. For some reason, even with certainty. Will there be fertility? If he continues to live as a when it was obvious that his bones were not growing, the male it would be possible to stop administering cortisol. doctor ignored this fact. Increased androgenization will ensure the development of At 17, Shai received his first draft notice for compulsory menstrual periods. In the meantime, we will not perform any military service and underwent a physical examination, surgery, and if there is a need, we will perform the following including an examination of his scrotum. During the exami- required surgeries: partial or complete hysterectomy and removal of the ovaries. We see no justification for shocking nation, it became clear to Shai, through the body language of [words deleted from the document] the parents and telling them the doctors as they looked at one another, that something was about our findings. We released the child with a recommendation amiss with his genitalia. They said nothing to him. He to administer 25 mg of cortisone and instructed the parents to dressed and went home. One month later, he received a letter bring him back for a follow-up visit in 10 days. stating that he was exempt from military service (on grounds of being “permanently unsuitable”). He attempted to appeal Shai’s physical characteristics are described here in a way the decision and asked to volunteer, in any capacity, “just to that presents different kinds of sex: genetic sex, gonadal sex, wear a uniform,” but without success. In retrospect, Shai and external sex. His multisexual body shocked the doctors, says that he understands why the military doctors never told so they could not justify telling his parents about his physical him anything, as this would have been an extremely difficult characteristics. The medical document suggests that the doc- task and a great responsibility to assume, considering that the tors were being considerate of the parents and preventing doctors who treated him during his childhood had not told them from being shocked, but in the document that Shai read him anything. So the military doctors maintained his civilian and is now unable to obtain the doctor wrote that his parents doctors’ rules of secrecy. were “primitive Moroccans,” so the reason for concealing Two years later, Shai was surprised to receive a draft the information from them was the prejudiced perception of notice for 3 years’ service. He now refused to join both his doctors, who assumed that because of their ethnicity, his because the army had rejected him in the past and because he parents would not be able to understand and cope with Shai’s had continued with his life and now had a job and plans for physical condition. Keeping Shai’s intersexed body a secret the future, so he appealed the recruitment and was subse- caused his physicians to perform the min-guf process on him quently summoned to a meeting of the Medical Committee. without sharing it with his parents and without their permis- Before the meeting, he unexpectedly received a large pack- sion. Shai became a “hospital child,” a child who belonged to age containing all his medical documents. This is how Shai the world of those who treated him and its perceptions. describes his experience of discovering the secret: Shai was born with classical congenital adrenal hyperpla- 8 sia (CCAH), which involves a lack of salt in the body and It said “female pseudohermaphrodite,” but one sentence deeply hormonal imbalances that result from an increased secretion shocked me. I’ll remember it to my dying day. . . . It said they of androgens. Shai’s doctors sexed his body as masculine, were making me into a boy because my parents were primitive the reason for this decision being the appearance of his penis, Moroccans. . . . I remember that I went to the committee and like an idiot gave them all the documents. . . . I understood why I felt in particular its size. Shai’s uterus and ovaries were removed, different and what was different and what was wrong with me. . silicone testicles were implanted in his body, and cortisone . . I didn’t want to talk about it, I was ashamed. . . . I buried it in was administered to balance his hormones. some corner of my body and covered it with stones and didn’t In a conversation I had with Prof. B., one of Shai’s doc- want to talk about it. 9 tors, he related the following : Among all the medical documents in the package was the I remember a patient who came from Pediatric Surgery at age document Shai presented to me early in our meeting. It includes two and a half. In a general exam, the doctor said his penis was a description of the min-guf process that Shai underwent during large. The person who conducted the Barr body test [used for his childhood, and reflects both the medical–technological detecting the X chromosome] said, “You know, it’s female. Meoded Danon 7 What shall we do with him now? Cut him? He has a functioning and not female. . . . I had a somewhat feminine voice, but uterus, ovaries. If he’s treated with cortisone he’ll reach sexual relatively low. The hormones made my voice much lower. maturity and then what? The ovaries will wake up, estrogens will make breasts, and then there will be menstruation, he’ll Today, Shai undergoes hormonal monitoring in the adult ‘urinate’ blood. It has to drain into something. It will accumulate endocrinology department, with a kind new endocrinologist in the uterus. What can we do to remedy the problem?” So if you of whom he is very fond. She arranged for Shai to have sur- decide to raise the child as a male, you remove the uterus. . . . We gery to replace the small silicone testicles implanted when he told the parents there was an “incompatibility.” [long silence] At was a child with larger ones. the age of two and half, the child was already big—there was no As Shai began to deal with the secret of his life and learn choice. I believe we made the right decision. Here you have to about his medical past, he became severely depressed and decide whether to amputate this penis. I remember my boss said, required psychological and psychiatric treatment. The more “You don’t amputate a penis like this!” he investigated, the more new things he discovered, includ- ing flashes of negative experiences from the hospital and The doctor’s words indicate that treatment practices in physical and emotional abuse by his doctors. Shai’s coping Shai’s case—that is, the process of sexing him as mascu- alone with the discovery of the secret, while he continued to line—were carried out because of his large penis. This is in hide it from others, threatened his life to the point where he line with the Johns Hopkins University approach of the time, considered suicide, but he decided not to bury his secret with the phallocentric approach, according to Kessler (1998), him. Several years ago, he began to suffer extreme pain in his which related to penis size. However, there is ambiguity lower abdomen and underwent a series of tests that revealed regarding the process of the medical monitoring of Shai’s the stump of a uterus in his body, a kind of historical, mate- body, the ramifications of the surgery for his body, and what rial remnant through which the body signaled, in its own all the doctors did when they noticed during follow-up that way, the physical secret it held inside. Shai’s bones had stopped growing, his body had stayed the The bodily secret, that is, the social, material product of same size, and his “large penis” was now relatively small, as the min-guf process, caused Shai to live in a world divided he stopped growing at age 13. Shai is angry at his doctors, between the external and the internal. These divisions, the who prevented his body from growing and did not prescribe same separation that produces the secret, as Bok (1984) hormone replacement therapy for him. He realizes in retro- claimed, are experienced by the body. The differences spect that the reason for this was to keep the secret from him: between his internal and external worlds caused Shai to learn to become an excellent actor, especially in highlighting his In order not to reveal the truth, [the doctor] would not give me hormones so I wouldn’t ask questions. . . . If you decide to make so-called “masculine” features in his social environment as me a boy, let me look like a boy! For G-d’s sake, give me the opposed to his “feminine” features in private. Shai was seen hormones on time! Everyone in our family is tall, so if you see . by his friends as a “man with balls,” a kind of “bad boy” who . . that I have stopped growing, give me [the hormones], help me acted violently and stood out. My intention in pointing out grow. . . . So, you see that all the signs show that he simply did this behavior is not to distinguish between “masculine” and not want this secret to be revealed. “feminine” features and to perceive them as given, or to reproduce gender stereotypes, but rather to show how Shai At the age of 22, when Shai discovered the secret, he con- distinguishes between these two worlds and to demonstrate cealed it from his friends and family, maintaining the rules of how this separation establishes embodied negative emotions, secrecy and hoping that it would disappear. He did not share frustration, and loneliness. Here, the body itself undermined the discovery with his parents and was especially angry at his the concealment of the secret, especially in the external father because he thought that he (who had accompanied him “boy–girl,” appearance that caused people to mistake Shai to the hospital during his childhood) had known about every- for a girl. The more people mistook him for a girl, the more thing and been involved in the doctors’ decision making. extreme were his reactions—“bad boy” behavior and chang- Only in 1997, years after his father’s death, when Shai was ing his appearance as an adult, growing a beard, and having able to read all the medical documents, did he realize that his larger silicon testicles implanted. However, the concealment parents actually had not been informed. game is exhausting and frustrating. For Shai, the hormones Shai decided to tell Dr. H., the new endocrinologist who are “a sham,” not a part of him. He says that he would like to replaced the doctor who had treated him throughout his child- rest from his frustrating struggle with the bodily secret and hood, that he knew what had happened to him and that it both- social conservatism. ered him that people mistook him for a girl. Dr. H. never Shai’s min-guf process established a bodily secret that spoke to Shai about his physical history, but he was kind to transformed his body and poisoned its being. The treatment him, explains Shai, and prescribed testosterone, which Shai policy, together with the bodily secret, led to Shai’s body being has taken ever since. He describes the changes in his body: neither female nor male, but rather a different kind of body, a body without internal sex organs, with a small penis and sili- I started shaving, which made me very happy. [smiles] I also cone testicles, a body that depends on synthetic hormones. grew a beard. For years I had a beard to show that I was male 8 SAGE Open Shai physically experiences resistance to the bodily secret in She felt terrible and cried all night. Until that evening, she various ways. For example, the body remembers its missing had expected to menstruate—Menstruation was something organs, as evidenced by the experience of physical pain that everyone was talking about as teenagers. Later, Ronnie lied caused Shai to discover the stump of the uterus in his body. to her friends said she had gotten her period. She bought In addition, Shai has always experienced the bodily secret in sanitary pads and kept them in a cupboard. When her mother his own unusual nature and difference, through his frequent saw them she asked Ronnie why she had them, Ronnie was hospitalizations and through the way in which his doctors embarrassed and explained that if a friend needed a pad, she looked at his body as though it were an object in a museum. would have one. Ronnie lied to decrease the social pressure Thus, even when he was unaware of the contents of the around her, thus participating in the establishment of the secret, it was palpable and real in his life, like a foreign body. bodily secret. Ronnie began to undergo examinations by the gynecolo- gist who treated her older sister with no explanation about Ronnie: “I Once Had Testicles” Is the nature of the tests or the reason for them. She underwent Similar to “I Have Testicles” (October the examinations as part of her routine, asking no questions. 7, 2005, November 21, 2008) After examining her, the gynecologist told her mother that Ronnie could have normal sex—that is, heterosexual sex— Ronnie’s story is very different from Shai’s; they grew up in because she had a vagina. In some cases of CAIS, the vagina different environments, at different socioeconomic levels, is narrow and doctors recommend expanding it with with different cultural values and different intersex condi- surgery. tions. Yet, a similarity exists between them in terms of their Ronnie and her sister each experienced the min-guf pro- embodiment and their bodily experience, which are closely cess alone. Ronnie’s sister underwent surgery at this time to linked to the secrets that surround their bodies. The course of remove her testes. This process was not shared with Ronnie. Ronnie’s life intersects with that of her sister, who is 4 years When Ronnie began to mature, the physical examinations older. Both were born with Complete Androgen Insensitivity were geared toward surgery to remove her gonads. This is Syndrome (CAIS). Although her sister did not participate how she describes the experience: in the current study, her presence was felt in Ronnie’s story, because she experienced the min-guf process and the estab- lishment of the bodily secret first, and Ronnie later went In the summer between eighth and ninth grade, I had surgery. My mother told me to say that it was hernia surgery, and that’s through the same process. This is how Ronnie began her life what I said. . . . I was told that they were removing my residual narrative: ovaries, so I wouldn’t get cancer or something. I didn’t know it was something else. . . . I have scars on my lower abdomen I was twelve, and my older sister was sixteen and hadn’t gotten [from the surgery]. her period, and my parents took her to all kinds of tests because of this matter. Later, they also took me for tests. Everything she Ronnie’s parents lied, concealing the real reason for her went through, I went through, and they didn’t explain why and I didn’t ask too many questions. . . . They told me I had been born surgery; instead of telling her that testicles were being without a uterus and couldn’t have children and I wouldn’t removed, they told her that residual ovaries were being menstruate. They even took the trouble to tell me that studies removed to prevent them from becoming cancerous. Ronnie prove that the girls who have this syndrome are pretty, tall, and told her friends that she had hernia surgery, as her mother not hairy. I remember that I didn’t believe them and thought it asked her to. The scars from her surgery remain on her lower was nice of them to tell me this, but it was clear they had done it abdomen, a sign that her body remembers what happened to to be kind, to make me feel good after the blow they had just it, a mark of its physical history. Following surgery, Ronnie dealt me. began to take synthetic hormones. In this way, through medi- cal treatment and her parents’ cooperation with it, the secret When Ronnie describes the “matter,” and what she calls was established in Ronnie’s body. “this syndrome,” there is a sense of alienation, a certain dis- One day her sister sent her an email with a link to the tance—alienation that I feel as a listener and alienation and Androgene Insensitivity Syndrome (AIS) group in England. distance experienced by Ronnie. The common perception is Ronnie kept the email in a folder and did not open it. When I that androgen insensitivity syndrome produces “beauty”— asked her why, she replied, girls who are pretty, tall, and not hairy. This is how doctors present the characteristics of this physical condition to par- When I saw that in the initials “AIS” the first word was androgen, ents. This myth of “beauty” is also reflected in popular litera- my only familiarity with that word was that it had to do with ture, for example, in the novel Middlesex by Jeffrey someone whose biology and gender are undefined, something Eugenides (2002) and in the media (in one of the episodes of between a man and a woman, and it was very frightening to me. the television series House). . . . I put it in a folder and forgot about it. After about two years Ronnie cannot describe in words what she felt after her . . . I told my friend, a doctor. . . . I told her what I tell everyone, parents told her she would not menstruate or bear children. and then she asked me, “So when did have your testicles Meoded Danon 9 removed?” and I felt like I’d been punched in the stomach, just knew she was a woman and not a man in the existing social– ashamed that I didn’t know. So I told her at age fourteen, as if I gender dichotomy. suddenly had made all the connections to the surgery I had had Ronnie, like Shai, experienced the physical dialectic. This then. Then she left, and I went to the website that my sister had took place during the surrogacy process, 3 years after our first sent me . . . and only then did everything become clear to me. interview. Ronnie told me that she had married her partner and they had begun the surrogacy process, during which she was Ronnie experienced the moment of the secret’s revelation required to undergo general medical examinations and provide in her body as a punch in the stomach, a feeling directly con- medical documentation confirming her inability to conceive: nected to her abdominal surgery, which the body remembers through a scar. Ronnie immediately made the connection When I do an ultrasound there is something comfortable in the between her surgery at 14 and the removal of her testes. The doctor just writing “uterus and ovaries not detected” and not secret, now revealed, that her body had contained testes, and “but testicles were detected” . . . because there is still a not damaged ovaries, frightened and deeply troubled Ronnie, dissonance between the self-concept, the gender I chose, and the fact that I once had testicles. It’s a dissonance that needs to be because the organ she most associated with masculinity had dealt with, and this solves the problem of the need to deal with been part of her body. She explains, it. It doesn’t completely solve it because, bottom line, “I once had” is similar to “I have,” but it still allows me to deal with it The subject of the testicles was the most problematic for me then and explain myself to myself and not explain it to the ultrasound and has been ever since. I didn’t tell my boyfriend about the technician, let’s say. testes, but only that I don’t have a uterus, and he took it with indifference. I don’t want to tell him about the testicles, because Ronnie’s bodily secret continues to exist, even when there I think this would have been a sexual turn-off for him. are no testicles in her body. Ronnie says that she deals with the secret by keeping it to herself. Thus, she maintains the After uncovering the secret, Ronnie began to explore her dissonance—the bodily dialectic. In retrospect, Ronnie physical condition; she read studies and wrote an academic explains that the secret has affected her life, her social abili- paper on the different forms of AIS, which she gave to her ties, her interpersonal relations, and her trust in others. sister and parents to read. Ronnie also recognizes the bene- The min-guf process that Ronnie underwent created a fits of her physical condition, such as being tall and not being physical secret that, in turn, produced a dialectic in her life hairy. Ronnie expresses her discomfort with the term between her body and her gender. The bodily secret here is “intersex”: actually a family secret, shared by her older sister, their par- ents, and their doctors. The secret no longer depends on the I don’t think of myself as intersex. . . . I don’t have any problem material physical characteristics of the intersexed body; even with my sex. I also think it has to do with the form of the syndrome that one has. The physical appearance of those with after Ronnie’s testes were removed, she experienced the ten- complete AIS is that of a woman and it’s different from other sion produced by the bodily secret. The removal of the testes syndromes, where there are elements of both sexes. . . . Despite did not produce a blurring or disappearance of intersexed my condition, it’s clear to me that I’m a woman; my sex was corporeality, but rather strengthened it and preserved it as a confused, but my gender was not. I will elaborate. Yes, I had bodily secret. The body is the secret, but at the same time it problems when I was younger. I was flat-chested and had short also undermines the secret. The feeling that Ronnie describes, hair, so people would mistake me for a boy and I was very the self-dissonance, threatens to reveal the secret. In other insulted. My hands are not feminine either, but I cannot imagine words, on one hand, the physical secret, concealing the inter- living life as a man. sexed physicality, protects Ronnie from the threat and the response to the disturbing physicality associated with mascu- Ronnie’s “physical reality” is dialectical, expressed in the linity. But, on the other hand, the body cannot conceal the tension between her internal corporeality and the external secret, and leaves the physical scars of the min-guf process. corporeality resulting from her “syndrome.” The dialectic is There are also emotional scars that are experienced physi- between her internal “masculinity” (testes, XY46 sex chro- cally, for example, the sense that the testicles exist even in mosomes) and phenotypical femaleness (female external their absence. The secret provides power, presence, and exis- genitalia). On one hand, Ronnie says that her corporeality, tence to the particular intersexual corporeality. her outer appearance as a woman with CAIS, is that of a woman, unlike what outer appearance may be in other physi- cal conditions of intersexuality. On the other hand, she says Or: “I Was Hooked Up to a that her physicality as a child made people mistakenly think Respirator” (November 6, 2009, she was a boy, and that she had been offended by this. December 25, 2009) Similarly, she adds that her “sex” is confused, but her “gen- Or, 28, is an academic. She is interested in researching the der” is stable, clear, and decidedly feminine. When I asked genetics of her physical condition—congenital adrenal Ronnie to describe what it means to her to “feel like a hyperplasia (CAH). Or is active in the CAH community on a woman,” she responded that she had no idea, but that she still 10 SAGE Open well-known Internet site and often provides biomedical remember I asked why they hadn’t removed my uterus dur- information to parents of intersexed children and to inter- ing the first operation.” sexed people with CAH. She begins with the story of her Or was aware of her corporeality early on. Her response birth: to her mother’s news about the impending surgery can be seen as an attempt to resist ordinary life, a uterus, fertility, I was born prematurely, in the eighth month, and it was a breech the kind of life her mother wishes for her. Or traveled to the birth. I’ve always been kind of contrary. They noticed something United States with her mother to undergo the second opera- strange and my mother told me that there was a doctor who . . . tion. She does not remember pain, but recalls that she recov- recognized the syndrome. Actually I was, I am, a classically ered quickly and was released early. After surgery, she had to difficult case. The term is CAH due to 21OH deficiencies, which preserve the vagina in her body and to use different expand- means CAH due to damage to enzyme 21 accompanied by the ers to widen it. As this was very painful for Or and for her loss of salts. I have all the problems. Aside from that, he mother, who tried to help her, in time they stopped. After the recognized that I did not look normal and so they monitored me second surgery, Or increasingly shut out her friends. When I closely, so I did not become dehydrated. asked her why she thinks she isolated herself, she replied, Immediately after birth, Or underwent a series of tests to The main reason, I think, is that when I was born the doctors monitor levels of hormones and salts in her body. Her exter- advised my parents not to tell. They told the grandparents, aunts nal genitals included an “enlarged clitoris” and closed labia, and uncles, and that was it. I mean, they knew what I had, but it and this situation brought about the initiation of the min-guf didn’t come up. . . . The parents didn’t tell. You understand, they process and diagnostic tests to determine her physical condi- didn’t talk about it. My siblings don’t know. tion. She and her parents were referred to the best hospital available at the time—Johns Hopkins University, which spe- At age 17, Or had a third operation and later an additional cialized in these surgeries. She recalls, one to open and expand the vagina, which her body had closed over time. The purpose of the operations was to By age 5, I actually already realized that I was different. I didn’t encourage her sexuality, especially the act of penetration. Or go to change clothes in the locker room at the pool. At five I claims that, although she is not in a relationship and does not underwent the first surgery. And then they arranged the external want to be in one, she still preserves the opening of the form [of my genitals], arranged what needed to be arranged. vagina because it is threatening to close again. Or’s min-guf process and the establishment of her physi- Or reveals here that at an early age, she had become aware cal secret caused her alienation and self-hatred. She does not of the physical differences reflected in the appearance of her like to be photographed or to see herself in pictures, and is external genitals. She describes the difference she sensed at a very young age when she saw that the women in the locker revolted by psychologists. Her sense of alienation is increased room did not have the same organ as she did. Or explains and reproduced both by the expansion of her vagina and the how she experienced her difference: “From the day I first operations she underwent and through her bodily secret, knew who I was, I knew somehow that I was not normal. To which is not spoken of. This is a kind of vicious circle—a have surgery at age five pretty much establishes this fact.” bodily secret that is not mentioned, but which controls her Or’s statement attests to the fact that genital surgeries life and threatens its existence. themselves increase the sense of difference in intersexed Or attempted to escape this vicious circle. When she was children and do not facilitate their adaptation or sense of drafted into the army at age 18, she decided to stop taking the social belonging, as biomedical experts claim. Or does not dexamethasone (a type of cortisone) she had taken all her remember many details of the meeting with the psychologist life. Or decided to get, as she says, “off the respirator” to at the clinic before her surgery, but she recalls that her mother which she had been attached since birth, which meant break- talked with the psychologist, and she mainly played with ing free from her bodily secret. When her doctor called her in toys she defines as “boys’ toys”—tractors and trucks. During for a blood test, Or told her that she had stopped taking the her childhood, Or remembers, she had to take medications, pills. The doctor informed her parents at once, and they which increased her sense of difference and alienation asked her to resume taking the medication. Thus, the doctor regarding her corporeality. violated medical confidentiality, and Or claims that if she At 12, Or underwent a second operation to continue the had filed a complaint, the doctor would have lost her license. construction of her external genitals. While the first surgery But she did not file a complaint. The physical effects of stop- constructed the outer labia, corrected the urethra, and reduced ping her medication included fatigue, depression, and facial the size of the clitoris, the second was aimed at constructing hair growth. a vagina and allowing the passage of menstrual fluid from Or and her parents conceal the secret from her siblings, the cervix. Or reports her recollection of learning from her and thus the physical secret becomes a family secret that cre- mother about the second surgery: “I remember she explained ates a boundary between those who share it and those who do that I had to have surgery so I could lead a normal life. I not within the family system. The secret sabotages family Meoded Danon 11 relationships and communication between family members. internal genitalia, and the side effects of synthetic hormones, The relationship between Or and her siblings and her parents producing a kind of dialectical “corporeal realism” (Shilling, is cool and distant. 2005) experienced by the intersexed subject, according to When I asked Or about love and intimate relationships in which his or her body simultaneously exists/does not exist, is her life, she explained that she has never experienced love present/absent, is hidden/visible. This dialectical corporeal that it is impossible for her: realism produces a vicious circle; when intersexed subjects reveal the physical secret and become aware of the differ- How can I tell someone I was born different, that what you see ence between their bodies and social sex and gender norms, now is the result of a successful plastic surgeon, more or less? I they become its agents and reproduce the rules that conceal have no idea what I look like compared to someone normal. I it. Thus, Or, Shai, and Ronnie conceal their physical secrets would argue that the work they did wasn’t one hundred percent from their siblings and other relatives, just as individuals perfect, that I’m quite different. I don’t know, I mean they forgot with conditions such as CAIS, ovotestis, or gonadal digene- to tattoo an orientation map on my genitals [laughs]. sis may conceal their chromosomal and gonadal characteris- tics, or CAH individuals conceal their presurgery genital Or asks how she can develop a relationship with another characteristics, from intimate partners. But the body objects person when she is unable to accept herself. She has a great and responds in its own particular terms, a situation that cre- deal of anger that erupts dramatically when someone annoys ates tension and conflict with the rules of concealment and her. Or’s anger is directed at herself, and she often sinks into often leads to a continuation of the “normalization” of the depression and talks to no one. body into a particular sexual ideal. And yet, the more the Or’s most dominant conflict is the struggle between the bodily secret continues to operate in the lives of the inter- body and the secret. Throughout her life, the secret was sexed, the longer they try to conceal it from those around established in her body with the aim of concealing the body them and from themselves, the more they experience alien- and its physical history. It thus undermines and suppresses ation from the body, alienation caused by the body and expe- the particular experience of the body, its appearance, its rienced in the body. The bodily secret disconnects and being in the world, and particularly its interaction with its separates body and mind, and distinguishes between them as environment and with others. Throughout her life, Or learned well as between consciousness and being and between soci- that her body was a secret, something different, and therefore ety and its norms and the material body. Bodily secrets pro- everyone was concealing it. The medications she takes, the duce a constant conflict that makes the existence of embodied surgeries she has undergone, and keeping the secret all reaf- subjects impossible, as they are caught between conflicting firm and intensify her difficult feelings. The bodily secret worlds. The only way to escape the vicious circle in which poisons her existence and causes conflicts and alienation intersexed people are imprisoned is to end the paradoxical from herself and others. attempt to conceal the intersexed body in the public space in general and from intersexed subjects in particular. That is, the surgical practices and the secrecy that surround them, Conclusion whose goal is to reproduce some kind of typical sexual/gen- der ideal and not necessarily to save lives or prevent physical The min-guf process of intersexed people, the surgical, hor- danger (except in rare cases in which gonads become cancer- monal practices, the deliberate concealment of the intersexed ous), do not ensure the welfare and happiness of intersexed body, and the attempt to make it “disappear” all establish a subjects. On the contrary, they endanger their lives and bodily secret. The secret is embodied as an organic feature undermine their social, familial, and intimate relationships. through treatment practices. Over time, it becomes a foreign The intersexed body has existed since the dawn of history. object that undermines the body’s orientation and existence. Attempts to make it disappear or to conceal it are damaging The bodily secret is a force that surrounds the body and pro- not only to intersexed people and their families but also to duces stress, frustration, and the alienation of intersexed sub- biomedical science, which, instead of attempting to normal- jects from their bodies. Physical secrets, like other toxic and ize intersexed bodies, could learn much from them about the dangerous secrets, cause the subjects who experience them different ways in which the human body develops and the to occupy opposing worlds. On one hand, intersexed subjects many challenges that it presents. live in a world run and disciplined by the rules of the secret and its agents, a world whose social, gender, and sexual Declaration of Conflicting Interests norms are reproduced, filed under an imaginary sexual/gen- der ideal. On the other hand, they experience in their bodies The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. a world that opposes both the rules of the secret’s game and the secrecy and social norms regarding sex/gender. The body Funding does not “know” how to conceal the secret and treats it like a “foreign body,” causing tension and unease. Thus, it reveals The author(s) received no financial support for the research and/or the secret through pain, inflammation, scarring, residual authorship of this article. 12 SAGE Open Notes 9. I interviewed Shai’s endocrinologist to get a historical per- spective on treatment methods in cases of the intersexed in 1. I understood the difference between privacy and secrecy at Israel. Without being asked, the doctor began to tell me about a later stage of my research. While privacy and secrecy are a unique case that he had treated and I understood that he was similar in that they both include an element of concealment, talking about Shai. researchers who differentiate between these two concepts 10. This syndrome is attributed to people with XY46 sex chro- claim that privacy is legitimate and ethical because every per- mosomes. There are two forms of “androgen insensitivity son has a right to protect his privacy as long as it does not syndrome”—complete and partial. In the complete form, the harm others. While secrets and secrecy are supposed to be body does not respond to androgens and does not develop as concealed, this concealment is directed at people from whom male. The gonads—testicles—are undeveloped and remain in the secret is concealed, to whose lives the secret is connected. the groin (in some cases creating a hernia) or abdomen. The When information connected to the life, emotions, or body of phenotype appears “female,” with female external genitalia— another person is involved, the secret is unethical and damages external labia, vagina, and clitoris. Frequency is 1 in 13,000 to the lives of others, from whom it is kept and to whose lives it 20,000 births. In the partial form, the body responds to andro- is connected (Bok, 1984). genic hormones partially, testes develop, and the phenotype 2. This traditional protocol was also called the “Money Protocol” is integrated—“ambiguous genitalia.” The older term for AIS (Davidson, 2009, p. 63). was “testicular feminization syndrome” (Harper, 2007). 3. Hermaphroditism was the traditional clinical term for inter- 11. For example, Ronnie told me about a woman with Complete sexed patients and was replaced in 2005, following the Chicago Androgen Insensitivity Syndrome (CAIS) whom she met, who conference, to “Disorder of Sex Development” (DSD). told her she had vaginismus, a condition in which the vagina is 4. Intersex Society of North America (ISNA) fell apart follow- tight or shrinks during intercourse (with penetration), and that ing its support of the term “DSD” and Chase, now called Bo it caused her pain and discomfort. Laurent, became the head of Accord Alliance group, which is devoted to supporting research and clinical cooperation with References biomedical professionals. 5. Currently, various intersex and interdisciplinary groups are Audi, L. (2014). Past experiences of adults with Disorder of Sex acting to raise awareness of intersexed peoples’ rights and to Development. Karger: Medical and scientific publishers, 27, change medical treatment. 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Saarbrücken, Germany: VDM Verlag Dr. Muller Limor Meoded Danon is a lecturer at Ben-Gurion University of Aktiengesellschaft. the Negev and Eilat Campus in Israel, her fields of interest and Kessler, S. J. (1990). The medical construction of gender: Case research are the sociology of the body, the sociology of knowledge, management of intersex infants. Signs, 16(1), 3-26. queer studies and phenomenology.

Journal

SAGE Open – SAGE

Published: Apr 10, 2015

Keywords: intersexed people; body; secret; min-guf process; Israel

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