Intersex

Catherine Harper

• Publisher: Routledge
• Year: 2020
• ISBN:
  9781000213096
• Edition: 1
• Topic: Social Sciences
• Subtopic: Anthropology
• Index: Social Sciences

Intersex' is the condition whereby an individual is born with biological features that are simultaneously perceived as male and female. Ranging from the ambiguous genitalia of the true 'hermaphrodite' to the 'mildly or internally intersexed', the condition may be as common as cleft palate. Like cleft palate, it is hidden and surgically altered, but for very different reasons. This important book draws heavily on the personal testimony of intersexed individuals, their loved ones, and medical carers. The impact of early sex-assignment surgery on an individual's later life is examined within the context of ethical and clinical questions. Harper challenges the conventional and radical 'treatment' of intersexuality through non-consensual infant sex-assignment surgery. In doing so she exposes powerful myths, taboos, and constructions of gender - the perfect phallus, a bi-polar model of gender and the infallibility of medical decisions. Handling sensitive material with care, this book deepens our understanding of a condition that has itself only been medically understood in recent years.

CHAPTER 1
Introduction

Individuals frequently contact the Intersex Society of North America (ISNA) because they think they may be intersexed. The ISNA indicates that generally those who are intersexed do not need to look far for the evidence:

the evidence is in their own bodies ... women who do not have ovaries, men who don’t have testes, women who have no clitoris or inner labia, people who remember multiple genital surgeries during childhood and scars in their genital area and abdomen, people who have ambiguous genitalia ...

Sometimes people tell us that they have fairly typical genitals, but they think that they must have been born intersex and subjected to a sex change as an infant. Surgeons, even today, cannot create ‘normal’ looking genitals, and surgery was much poorer decades ago. Thus, if you have genitals that look like most women (or men), then you were surely born with these. (www.isna.org/book/print/716, accessed 13 March 2006)

The Uncanny 'Hermaphrodite'

The Observer newspaper’s article ‘In Ancient Greece, She’d Have Been a God. In Wales, They Spit on Her’ (Hugill 1998) detailed some of the life of Linda Roberts, born in London during the Second World War, and then living in a remote part of Wales. The author described Roberts as ‘born with a penis and a vagina’, and named her a ‘hermaphrodite’ (ibid.: 7). While the author was sympathetic to his subject, the reference to ‘dual genitalia’ is inaccurate. Roberts was probably intersexed, and – in all likelihood – exhibited genital ambiguity.

In 1933, Sigmund Freud acknowledged a significant human desire to know with certainty what sex a person is: ‘when you meet a human being, the first distinction you make is “male or female?” and you are accustomed to make the distinction with unhesitating certainty’ (1933: 113). Freud’s text continued by describing sex as a biological fact, with anatomy as stable, binary and indisputable (he subsequently distinguished between anatomical sex and the less fixed notion of gender). Freud’s articulation of cultural investment in the certitude and familiarity of male and female is important, and intersex represents a notable challenge to the ‘unhesitating certainty’ Freud described as customary.

Earlier, in 1919, Freud had introduced his concept of the uncanny as ‘that class of the frightening which leads back to what is known of old and long familiar ...’ (1919: 220). Is it the very familiarity and certainty of normative and exclusive male and female sexual anatomy that makes the genital ambiguity of intersex both uneasily familiar and sufficiently different to activate Freud’s uncanny? The ‘hermaphroditic’ body combines both male and female sex signifiers in what might be considered an uncanny merger. Freud further defines his uncanny as that which ‘ought to have remained secret and hidden but has come to light’ (ibid.: 241), and there is no doubt that this resonates with a cultural appreciation of intersex as taboo, a counter to ‘infant purity’. Uncertainty of sex – especially in the newborn – activates parental and cultural shame, guilt and panic. Faced with a ‘hermaphrodite’ baby, many parents find it intolerable that their child is neither boy nor girl. They fear for their infant’s future, and they fear for themselves. The drive to surgically ‘normalize’ the genitalia of those infant intersexuals whose genitals diverge from a familiar norm is arguably connected to a desire to dispel the force of uncanniness, with its associations of superstition, deathliness and negation.

'Hermaphrodites' and Intersexuals

[U]ntil recently no-one wanted to know about us; except for the quaint bit of mythology but certainly not as the living reality ...

Chris, correspondence 21 May 2004

The word ‘hermaphrodite’ arguably carries mythological and fetishistic associations that serve to dehumanize and stigmatize the living and real individual to whom the word is applied. If an intersexed newborn is considered uncanny, freakish, mythic or monstrous, as may be implied by the word, and labelled as and by ‘its’ genitals, then perhaps it becomes easier to advocate what is considered by some as ‘sexually mutilating’ (Chase 1998a) surgery on those genitals. Alice Domurat Dreger (1998b), for example, notes that the conventions of medical ethics become vulnerable in instances of ‘hermaphrodite’ births where infant genitals are ambiguous, and non-consensual, non-urgent treatment can rapidly be normalized. The secrecy and stigma surrounding intersex perpetuates the perception of monstrosity, indicating to intersexed people that their ‘defect’ is so monstrous it should be erased.

While ‘intersexual’ is now often preferred to ‘hermaphrodite’, the latter is adopted ironically in, for example, the Intersex Society of North America newsletter Hermaphrodites with Attitude: ‘it is time for us to counter physicians’ assertion that a life as a hermaphrodite would be worthless, by embracing the word and asserting our identity as hermaphrodite. This is the way to break the vicious cycle in which shame produces silence, silence condones surgery, and surgery produces more shame’ (Anon 1994: 6).

Interviewee Anja proudly wears a T-shirt proclaiming Schon mal mit nem Zwitter gesprochen? Hier ist die Gelegenheit (Ever talked to a hermaphrodite? Here is your chance). Anja reclaims the previously pejorative ‘Zwitter’ (German for ‘hermaphrodite’) to re-value herself as intersexed. And one of Roz Mortimer’s subjects, quoted on the Wonderdog website in relation to her film Gender Trouble (2002), finds ‘hermaphrodite’ ‘rather poetic’, using it particularly to dispel its traditional ‘hint of freakishness’ (Mortimer 2002). ‘Hermaphrodite’ continues to be used widely in medical literature, although ‘intersexed’ more accurately describes those with conditions and configurations neither wholly male nor wholly female. Unlike mythological ‘hermaphrodites’, intersexuals are present in this world. Variations in genetic formulation, hormonal effects before and after birth, and developmental atypicalities with unknown causes result daily and globally in the birth of ‘boys’ with tiny or absent penises and/or undescended testicles, ‘girls’ with enlarged clitorises or no vaginas, or infants whose chromosomes, organs and hormones are mixtures of those typical for girls or boys. In the face of intersexual evidence, however, medical science continues to insist on perpetuation of a two-sex system, determining that those babies who vary from easy definition still need to be defined within that system.

Just as developments in medical science in the nineteenth and early twentieth centuries resulted in a surge of reported ‘hermaphrodite’ cases, the development of intersex advocacy in the later twentieth and early twenty-first centuries has seen much wider exposure of intersex and the variety of its presentations. Estimations of intersex frequency vary in quality and exactitude (Blackless et al. 2000): firm guidelines for the definition and diagnosis of some intersex conditions do not exist; definitions of a typical male and female vary somewhat; and the frequency of some intersex conditions differs for different populations. These factors reinforce the elusive nature of the apparently mythical ‘hermaphrodite’.

Chase asserts that at least 1 in 2,000 births is sufficiently sex ambiguous ‘that professionals cannot easily determine what sex to label the baby’ (1998a: unpaginated). Blackless (Blackless et al. 2000) proposes deviation from the ‘ideal’ dimorphic body in the United States may be 1 in 50 of live births, of whom 1–2 in every 1,000 subsequently receive ‘corrective’ genital surgery, while Professor Milton Diamond of the John A. Burns School of Medicine, University of Hawaii, and the Pacific Center for Sex and Society, Hawaii, asserts that ‘the best stats on intersex conditions … are those in the work of Dr. Anne Fausto-Sterling’ (correspondence 2 April 2002), specifically referencing Table 3.2 in Fausto-Sterling (2000: 53). Fausto-Sterling (in Blackless et al. 2000) is also the source for statistics posted on the website of the Intersex Society of North America, and the ISNA synopsis simplifies what are complex and condition-specific figures:

If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1500 to 1 in 2000 births. But a lot more people than that are born with subtler forms of sex anatomy variations, some of which won’t show up until later in life. (www.isna.org/faq/frequency, accessed 13 June 2004)

If 1 in 2,000 infants exhibit noticeable genital atypicality, then around 320 such babies would have been born in England and Wales in 2004 alone (since there were 639,700 live births in that year). Sarah Creighton, Consultant Obstetrician and Gynaecologist at Elizabeth Garrett Anderson Hospital, University College London Hospitals, UK, is somewhat sceptical of these figures, but indicates that current statistical monitoring for intersex is in disarray, and there is an urgent need for formal collection of data before it is possible to say with any accuracy how frequent intersex is (interview 9 February 2006).

Orientation of the Subject

Dreger’s book Hermaphrodites and the Medical Invention of Sex (1998a) charts how scientists and medical practitioners historically encountered intersexuals in the nineteenth and early twentieth centuries. Dreger indicates how those encounters both informed the evolution of scientific understanding of human sex development and contributed to the development of surgical capabilities by which to define and shape sex ‘normality’. Tony Briffa, President of the AIS Support Group Australia, suggests that around 25 per cent of intersexed infants have visibly ambiguous genitalia (correspondence 3 April 2002). Since the 1950s, many of these infants born within Western medical culture have been subjected to early genital surgery, frequently reinforced by hormone treatment. Surgeries include: the removal of clitoral tissue perceived as overlarge; the reconfiguration of penises with openings other than at their tip; removal of ovarian or testicular tissue deemed inappropriate to the sex assigned; etc. These procedures sound like the reassuring correction of wrongs, but there have been many associated problems. A medical convention developed, for example, of non-disclosure of the details of their conditions and treatments to intersexuals as they matured. Some intersexed people discover only in adulthood that they are intersexed, that they were operated on in infancy, that their sex was determined surgically, and that there may have been other treatment options that are now no longer available to them as adults. Their own bodies become uncanny signifiers, at once familiar and unfamiliar. This ‘stigma of the self’, coupled with social-cultural stigmatizing, has led many to suffer psychiatric difficulties and sexual dysfunction. Others mourn the permanent loss of either an intersex identity or a sex identification opposite to that assigned to them.

Until recently, follow-up research to determine the long-term effects of such surgeries has been poor. More current research indicates that cosmetic (rather than life-saving) genital surgery in infancy is frequently not wholly successful (Creighton et al. 2001a), and the secrecy surrounding many such diagnoses has been described as damaging and destructive to the subject’s sexual, erotic and emotional health (Hendricks 2000 referencing Chase). While those who are dissatisfied are probably most vocal, and while those commenting on their own surgeries are describing procedures carried out years before (Ransley, interview 6 September 2005), there are significant numbers of adults who express rage and despair at their non-consensual loss of erotic sensation and self-determination: ‘having been one of the folks who got mangled (relatively lightly) in childhood – I can generally control my anger these days, but at times in the past (before I worked through it all), it could reduce me to a wreck if I dared think about it too much ... it’s a wicked business ...’ (Claire, correspondence 29 March 2002).

Sex of Rearing

An intersexed person is holistically defined as one ‘whose biology includes an identifiable mixture of male and female characteristics, regardless of the appearance of the genitalia at birth’ (Diamond 2004a: v). Professor Milton Diamond has long advocated a non-surgical route in the medical management and care of intersexed infants. He perceives recent significant changes in the US in respect of surgical treatment of intersexed infants: ‘about 75% of the pediatric surgeons would no longer follow the protocols they followed [in the 1990s] ... Currently they would be more in keeping with our recommendations’ (correspondence 2 December 2005).

Diamond acknowledges a ‘marked step forward’ (2004a: iv) in critical and ethical examination of this subject, and cites a range of shifts – including the formation in 2000 of the (now disbanded) North American Task Force on Intersex to collect data on long-term outcomes of intersex treatment and management – as evidencing growing concerns for reflection on progress to date. The recommendations of the late 1990s to which Diamond refers above are detailed in Chapter 4, but broadly he (1999) and colleagues Kipnis (Kipnis and Diamond 1998) and Sigmundson (Diamond and Sigmundson 1997a) advocated:

• holistic examination of the infant rather than solely visual examination of the genitalia which tends towards precipitous appearance-based diagnosis;
• expert multi-disciplinary team diagnosis rather than an individual professional deciding on sex assignment and treatment;
• honest disclosure of intersex diagnosis as opposed to obfuscation or denial with resultant secrecy, stigma and shame;
• clear information and specialist counselling for parents to help them come to terms with diagnosis and to prepare them to best support their child;
• total patient and family confidentiality, respecting patient privacy, and enabling parents to process information privately and disclose it as they deem appropriate;
• decisive and informed determination of sex of rearing, with a moratorium on infant genital surgery (except in instances of unavoidable hazard to the child).

While Diamond emphasizes the third recommendation regarding honesty (correspondence 13 January 2007), the last – sex of rearing – is also key to this author’s interest in his recommendations. Diamond held that, rather than permanently assigning sex to an intersexed infant via cosmetic surgery on its genitalia and associated hormone treatment, the child should be assigned sex without lasting changes to its body. The sex of rearing should be decided on the basis of a range of complex signifiers rather than solely on genital appearance:

• genetic sex (if that is straightforward);
• in utero and post-natal endocrine (hormone-related) events that will most likely affect development at puberty;
• genital configuration;
• the child’s potential for sexual and social development through and after puberty.

When these are all considered, Diamond argues, a reconciled decision informs which sex – male or female – the intersexed child should be raised as. Diamond recommends that cosmetic genital surgery and major prolonged hormone treatment (except, for example, for the essential management of Congenital Adrenal Hyperplasia, an intersex condition with some potentially life-threatening complications detailed later) should be avoided until after puberty. Following the substantial changes puberty delivers, the patient can make informed consensual choices about any treatment to be undertaken, and take responsibility for its consequences. Diamond indicates that his recommendations are beginning to be adopted by a significant number of paediatric surgeons in the United States (correspondence 2 December 2005). This signals the initiation of a potentially different culture of intersex management where some surgeons who previously advocated surgery and hormonal prescription to ‘correct’ the ambiguous sex of intersexed infants are rethinking their practices.

The Sex Binary

There continues to be strong adherence to the sex binary (male and female), and only marginal interest in more radical approaches to sex – as more than two; or as a male-to-female continuum with intersex somewhere in the middle. Anne Fausto-Sterling, for example, in Sexing the Body: Gender Politics and the Construction of Sexuality (2000), argues for allowance of significant variation in human sex and sex-behaviours. She synthesizes material from discourses within social science, feminism, biology to form a position tolerant of flexibility and evolution in relation to a person’s sex. Sharon E. Preves, in Intersex and Identity: The Contested Self (2003), examines the personal narratives of intersexed adults weighing up ‘sexual deviance’ against sexual conformity in their personal construction of sex identity, while Suzanne Kessler, in Lessons from the Intersexed (1998), concludes that it is unlikely that the exclusive sexual binary will be undone in the mainstream in the foreseeable future.

Kessler does, however, detect a gradual relaxation about genital variation (she prefers this term to genital ambiguity), and she welcomes this as potentially, eventually, unhooking genitals from signification of sex and therefore gender. Her thesis is that as long as a genital dichotomy is idealized, and surgery used to reinforce it, then ‘genitals mean gender [Kessler’s emphasis]’ (1998: 132). If variation – in the wide range of genitals understood as male, as female, as well as those that are ambiguous or intersexed – is accepted and normalized, then Kessler argues that we can let go of the ‘responsibility and [the] burden’ of gender (ibid.). She presses that we ‘must use whatever means we have to give ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Acknowledgements
• 1. Introduction
• 2. The 'Mythological Hermaphrodite'
• 3. Louise's Story and Others
• 4. David's Story and Diamond's Recommendations
• 5. Oluyemi's Story
• 6. Sarah-Jane's Story and Others
• 7. Changes in Standards of Care?
• 8. Lorna, Jessie, Sal and Congenital Adrenal Hyperplasia
• 9. Joanne, Ellen, Peggy and Androgen Insensitivity Syndrome
• 10. Severe Undervirilization in Genetic Males
• 11. 'Hermaphroditism' and Gonadal Dysgenesis
• 12. Sex Chromosome Variations: Klinefelter's Syndrome
• 13. Sex Chromosome Variations: Turner Syndrome
• 14. Conclusion
• Appendix 1. Correspondence and Interviews
• Appendix 2. Societies and Advocacy Groups
• Bibliography
• Index