Intersexuality: On Secret Bodies and Secrecy

ABSTRACT

The article problematizes the treatment of intersex as a secret within the medical and family systems. Under the biosocial assumption that the “intersexual” body is pathological and requiring immediate surgical and hormonal regulation, intersex individuals are made to undergo a process of transforsexation, that is, the violent production of a normative masculinity or femininity by means of invasive clinical practices. In this process absolute secrecy serves as a central factor for the success of normalization. We argue that not only does “the secret” of intersex bodies become an active factor in the normalization of sex but also paradoxically it is counteracted by the body, which does not “speak” the language of “the secret” and continues to reproduce new forms of intersex combinations in response to ongoing medical intervention. Our analysis is based on case histories told by 6 mothers of intersex children and by 11 intersex adults, stories in which secrecy has been an essential theme in the process of transforsexation imposed by doctors and followed by the parents. Secrecy, even more than the surgery itself, was, in the experience of intersex adults, a great cause of confusion, anger, mistrust, and criticism. Because of secrecy, intersex children are thus deprived of a language to name their experience or interpret the sense of their body.

Notes

¹ For further information on birthrates, see www.isna.org/faq/frequency

² The numbers of intersex births are tricky. The Israeli Central Bureau of Statistics shows that in 2009 there were 625 births of babies with sex and urinary congenital defects. There is no mention of intersex as such.

³ David Reimer (born as a boy, raised as a girl named Brenda, and referred to in medical circles as “the Joan/John case) became a famous case of John Money’s controversial treatments of transsexual and intersex persons at Johns Hopkins University after a BBC documentary (aired in 2000) and a popular book As Nature Made Him by the journalist John Colapinto (2000). Butler (2004) extensively reviews and criticizes the case in her book Undoing Gender, chapter 3 (pp. 57–74).

⁴ Germany has passed a new law, which is meant to stop forced operations by letting parents assign a third sex to their newborn baby on the registration forms. There are also a few states in the United States that allow this.

⁵ The term DSD was established at an international interdisciplinary conference in Chicago in 2005.

⁶ There are various possibilities of intersex: Congenital Adrenal Hyperplasia (CAH) may include closed labia, a larger than normal clitoris (one centimeter at birth) or a smaller than normal penis (2.5 cm at birth), the lack of a vagina, or hypospadias (displaced urethral opening). CAH occurs when the body lacks certain enzymes, leading to a functional imbalance of the adrenal gland and increased secretion of androgens. In certain situations the genitalia may appear male or “ambiguous” (bonded labia, absence of vagina, and a penis/clitoris). This is a form of sensitivity to androgen, where the deficiency of the 5-alpha enzyme prevents the testosterone from turning into dehydrotestosterone (DHT), which is the active substance of the testosterone hormone that causes the development of “male” sexual characteristics (external genitalia) and the appearance, at puberty, of secondary “male” sexual characteristics: Adam’s apple, deepening of the voice, hirsuteness, growth of the penis, and secretion of semen. Partial Androgen Insensitivity Syndrome is a condition in which the body absorbs androgens only partially, leading to the partial development of internal and external genitalia with both male and female characteristics, for example, the development of testicles and a uterus. Complete Androgen Insensitivity Syndrome (CAIS) is a condition in which the body is unable to absorb androgens and develops phenotypically (externally) as female; the external genitalia appear female, but the internal morphology is male. Sometimes the testicles are in the groin or in the stomach. A lack of conformity between phenotype and genotype is also associated with the conditions called 5-alpha reductase deficiency and 17β dehydrogenase hydroxysteroid deficiency, in which the enzymes controlling the level of testosterone and its absorption in the body are missing, and the body usually undergoes a process of virilization (masculinization) at puberty, although at birth the phenotype is usually female. Sometimes the gonads develop partially, or there may be gonadal dysgenesis, ovotestis, or a lack of gonads, as in Turner’s syndrome. In certain conditions the karyotype varies from the “typical” sex chromosomes, as in Turner’s syndrome (45, X0), Kleinfenter’s syndrome (47,XXY; 48,XXXY), and mosaicism (XXXY).

⁷ All the practices we mention with regard to the process of transforsexation are based on the Israeli case. According to the doctors we interviewed, the follow-up protocols include only technical information about the body’s adaptation to the medical procedures but nothing about their well-being, happiness, or state of mind.

⁸ These recommendations appear in Money and Erhardt’s book Man and Woman, Boy and Girl (1972), which was very popular. Similar recommendations are made in earlier writings by Money and his associates. The methods of treatment were devised mainly in the 1960s when the surgical techniques also began to improve.

⁹ The study is part of the doctoral thesis of the first author, who also conducted the interviews with doctors, parents, and intersex subjects. The larger study included interviews with 22 medical experts including endocrinologists, geneticists, family doctors, gynecologists, urologists, social workers and psychologists, 11 intersex subjects, and 6 mothers.

¹⁰ Reaching intersex people and their families was a long journey that required sensitivity, patience, and deep commitment. The first author was able to enter a support group through Shacker, whom she met at an international conference on intersex in the United Kingdom, March 19, 2005. Shacker, who was the organizer of a support group in Israel, made the first connections for us. At some later stage the first author succeeded in making some connections on her own through the Tapuz website.

¹¹ All names were altered, identifying details (such as geographic locations) changed, and the interview files were secured in a coded system.

¹² New research on how transgender people in Israel use the Internet shows that some youngsters and adults reveal and share intimate fantasies and performances they don’t want their family and friends to know in order to manage their identity in secret. See Marciano (2014).

¹³ We thank the anonymous reviewer who suggested that “shame and authority are folded into the idea of secrecy making for a very interesting tension between maternal and medical anxiety.” We also thank the co-editor who further offered that “secrecy [could] be seen as a placeholder for shame as it travels back and forth between doctors and parents and children.” Our data show that this viable direction is indeed deserving of further inquiry and writing, which unfortunately we cannot pursue here.

¹⁴ One of the popular images regarding CAIS, which also came up among a number of doctors in this study, is that these girls are pretty and tall. It has also appeared in television series such as House and in popular literature such as the novel Middlesex by Jeffrey Eugenides (2002).

¹⁵ Shacker is a name in Arabic that means intersex. It is the alias chosen by this participant, whose life story the first author used in her doctoral dissertation. Shacker founded the support group in 2006 in order to create a place where intersex subjects could share their stories, frustrations, and difficulties in society and could also receive support from others experiencing similar hardship. Parents of intersex subjects also participate in the group, which holds meetings and get-togethers at irregular intervals of several months.

Additional information

Notes on contributors

Limor Meoded-Danon

Limor Meoded-Danon, Ph.D., lectures on gender and sexuality. She received her Ph.D. from the Department of Sociology and Anthropology at Ben-Gurion University, Israel. Currently she is writing on sexualities and identities in Israel.

Niza Yanay

Niza Yanay, Ph.D., is Associate Professor in the Department of Sociology and Anthropology at Ben-Gurion University, Israel. She is the author of the book The Ideology of Hatred: the Psychic Power of Discourse (Fordham University Press, 2012).