30 August 2007

Intersex: The space between the genders

The West defines gender in two distinct categories. But gender may be a spectrum. Why does society, and even science, struggle to understand and accept those who are somewhere between male and female?
Intersex: The space between the genders

Credit: Getty

AFTER YOUR NAME, what’s the first thing you’re asked on most forms? It’s almost always whether you’re ‘male’ or ‘female’, right? Gender is so basic to our identity that few of us stop to even think about it. However, for a significant proportion of the population it’s not so black and white. Consider these real-life stories:

There once was a boy named Bruce. As a baby he lost his penis in an accident and was surgically transformed into a girl called Brenda.

Then there’s Kylie. She was told that she was born with deformed ovaries that were surgically removed at age four. As a young woman, she discovered she was actually born with testes and male chromosomes, though she has only ever considered herself female.

Tony was also technically born as a genetic male but, because of his atypical genitalia, the doctors at the time decided he would be better off assigned as a female. By the time he turned seven, his phallus had started to grow. Doctors subsequently removed his testes to prevent him from masculinising any further; but the truth was he had always felt like a man, not a woman. When he turned 30, he chose to live his life as a man.

Zoe was born a male but always felt like a female. She did her best to accept her male form and identity but found the effort to maintain the charade became increasingly difficult and stressful over the years. Then, aged 47, her body spontaneously began making the transition into a female … and the relief was enormous.

SO WHAT’S THE STORY? Is gender merely a state of mind, an attribute that can be switched over with a bit of surgery and positive thinking? We think of our gender as something ‘given to us by nature'; but could it have just as much to do with ‘nurture’?

The issue of gender is not as sharply defined as most people believe. As the stories of Bruce, Kylie, Tony and Zoe make clear, the boundaries that separate masculine and feminine can sometimes be difficult to delineate. And science attests to that.

In an idealised gender world, human beings are a perfectly dimorphic species represented by males and females. In this scheme, the male type has X and Y chromosomes, testes, a penis and a suite of secondary sexual characteristics including a muscular build and facial hair.

The female type has two X chromosomes, ovaries, a system to support foetal development and its own suite of secondary sexual characteristics such as developed breasts. Most of us know where we fit into this scheme even if a few of the details lie outside of the norm. Some women have facial hair, for example, while some men have none. Some women have deep voices, and some men don’t.

But these variations associated with gender go a lot further than most people realise. They extend to include chromosomes, hormones, internal sex structures, gonads and external genitalia. So we can still accept a woman with facial hair as a woman, but what do we call her if she also has a penis? And what do you call a man who is born with a small penis and a vaginal opening?

These days, people born outside of the idealised dimorphic mould are called intersexuals, and you might be surprised at the number of people who fall into this category. Anne Fausto-Sterling, a professor of biology and gender studies at Brown University in Providence, U.S., carried out an extensive survey of medical literature published between 1955 to 1998 that discussed the frequency of various categories of intersexuality, from additional chromosomes to mixed gonads, hormones and genitalia. She calculated that, for every 1,000 children born, 17 are intersexual in some way. That means an astounding 1.7 per cent of the population are born intersexual.

Other estimates range from 1 in 2,000 newborns to just 0.018 per cent of all births, depending on how rigorously one defines genital ambiguity. Some studies suggest some two per cent of children born with chromosomal or other non-genital features could also be considered intersex. Peter Koopman, a celebrated geneticist at the University of Queensland in Brisbane, suggests intersexuals may be surprisingly common. “About four per cent of live births are affected by these disorders, which can result in infertility, genital abnormalities, gender mis-assignment and long-term psychological trauma.”

Fausto-Sterling cautions that such estimates are ‘ball-park figures’. Even so, they will come as a surprise to many: it suggests that there are between 3,700 and 832,000 intersexuals in Australia. Yet many of us would be hard pressed to name someone who is an intersexual. So where are they? Are they invisible? Are they in hiding? Or are we so fixated by dimorphism that we don’t notice?

THE DEFINITION OF INTERSEX is elusive, but scientists and intersexuals themselves agree that genital ambiguities or atypical genitalia are a starting point. But this can take many forms: from having both ovarian and testicular tissue in one person to — most typically — possessing a micropenis on a male or an oversized clitoris on a female, as well as various discrepancies between chromosomal identity and the external genitals, where chromosomes indicate one gender but the genitals indicate another.

There’s so much uncertainty partly because it’s a topic that is so little discussed. If you’re born with ambiguous genitalia, it’s unlikely that your parents are going to broadcast the fact. More than likely they’ll keep the information to themselves, fearing the repercussions for themselves and for you. Even if the nature of your intersexuality doesn’t manifest itself in an obvious physical form, it’s something that marks you as different — even if you’re the only person who knows.

Concepts of gender norms and identity are so ingrained that those born outside the traditional definition of what it is to be male and female are often stigmatised and, in some cases, even demonised.

Historically, intersexuals with obvious genital differences were either labelled as freaks, or lived closely guarded lives. But from the 1950s, a third way emerged, with the belief that our medical technology and surgical mastery could rectify whatever it was that nature had left ‘unfinished’ or ‘ill-determined’.

One of the pioneers of this approach was the late John Money, a psychologist based at the Johns Hopkins University at Baltimore, U.S., from 1951 through to 2006. He was a specialist in the study of congenital sexual-organ defects, and hypothesised that gender identity is completely malleable for about 18 months after birth. He argued that when a medical team is presented with an infant who has ambiguous genitalia, they can effect a surgical gender assignment solely on the basis of what is physically most practical.

Along with psychiatrists Joan Hampson and John Hampson, also from Johns Hopkins, Money developed case management principles for the treatment of intersex infants. Following corrective surgery, the physicians were to encourage the parents to raise the child according to the surgically assigned gender. The rationale was that this would eliminate psychological distress for both the patient and the parents. Indeed, treatment teams were never to use words such as ‘intersex’ or ‘hermaphrodite’, but would rather tell the parents that nature intended the baby to be the boy or the girl that the physicians had created.

And so the Hopkins model — sometimes referred to as the ‘optimum gender of rearing’ model — spread throughout the developed world. Surgeons performed cosmetic genital surgeries on intersex children without their consent, believing it was necessary and appropriate, while endocrinologists manipulated patients’ hormones to try to get their bodies to perform more like the newly selected gender. Most clinics specialising in the treatment of intersex babies still rely on these case management principles, though in recent years there has been a growing chorus of protest regarding the wisdom of this approach.

Money went on to publish many detailed case studies of intersex children whom he said had adjusted well to their gender assignments. However, he held up one case in particular that he believed conclusively proved his theory, one that didn’t even involve intersexuality; rather it concerned a ‘normal’ baby boy called Bruce who had a terrible accident.

IN 1966, TWO BABY BROTHERS, identical twins Bruce and Brian Reimer, underwent a routine circumcision in hospital; but the operation went horribly wrong for Bruce and he lost his penis. The distraught parents consulted John Money, who advocated gender reassignment. The parents agreed and Bruce’s testicles were removed at 21 months. His parents were instructed to raise him as a girl and not to divulge details of his reassignment to anyone. Bruce became Brenda, who, according to his mother, “was a beautiful little girl” who grew to love wearing dresses and having her hair done.

Money pronounced the experiment — widely known in medical circles as the John/Joan case — a stunning success that validated his gender fluidity theory. Bruce, after all, began life as a ‘normal’ boy (not an ‘abnormal’ intersexual). And because he had an identical twin brother who remained a boy, Bruce’s ‘successful’ transition to Brenda was an emphatic demonstration of the power of medical science and the triumph of nurture over nature. Debate over!

But the debate wasn’t over at all. Indeed it hadn’t really even started. As far as Bruce was concerned, his life as Brenda was a lie. He simply never accepted the gender reassignment and always felt like a boy. Indeed, with time he grew ever more miserable. When Bruce reached puberty, Money encouraged the Reimers to put the boy through a final step and allow surgeons to create a vagina. Bruce rebelled and threatened to commit suicide if he was forced to undergo the operation. It was only then that his father broke down and told him what had happened to him as a baby.

Even without a functioning penis and testes (which had been removed as part of the reassignment) Bruce attempted to rebuild himself as a man. He renamed himself David, sought masculinising medication and underwent four rounds of reconstructive surgery to remake himself physically as a male. He married a woman with children (whom he adopted) and for a time it appeared that David Reimer had regained some sense of identity and happiness. Unfortunately, it didn’t last. After a few years, he separated from his wife and committed suicide in 2004. He was 38.

As the full story of David Reimer’s life has come to light, other individuals who were reassigned as males or females shortly after birth, but who later rejected their early assignments, also began to come forward. So, too, have cases in which the reassignment has worked — at least into the subject’s mid-20s. But even then, the aftermath of the surgery can be problematic, with the procedure often leaving scars that reduce sexual sensitivity.

“The acquisition of gender is far more complex than had previously been thought by the experts,” says Ann Stewart, director of the equity office at the University of Queensland. “Gender assignment through surgical intervention followed by hormone treatment and social conditioning has been performed on countless intersex children on the basis of the dominance of nurture over nature theory supported by Freudian theory, which propounded that healthy sexual development was related to the presence or absence of a penis.”

OVER THE YEARS, doubts about gender reassignment have continued to grow. Questions have been raised about the validity of the science on which it’s based, on the ethics of constraining a patient’s future without first gaining their informed consent, and even on the very nature of viewing intersexual conditions as being abnormal (as opposed to falling within the naturally occurring variations of sex and gender).

“In our culture, we tend to conflate people’s gender with their biological sex, gender identity and gender expression, and often gender expression with sexuality,” adds Stewart. “There is an expectation that individuals will be located at the extremes of the scales — men on the left and women on the right. The reality is, however, that people can be located anywhere along any of these four independent scales.”

While medical practitioners and scientists have made important contributions to this evolving debate, the shift in sentiment has largely been driven by the intersexual community itself which, for the first time in history, has spoken out as a group and begun demanding respect and acknowledgement for people with intersexual conditions.

The Intersex Society of North America (ISNA) is one of the biggest intersex lobby groups in the world, and it explicitly advocates a process of empowerment. That adds up to a mix of support, acknowledgement, sharing and counselling with surgery only used to sustain the physical health of the child.

However, that doesn’t mean the ISNA is against gender assignment. Indeed the organisation suggests that after a rigorous diagnostic analysis, intersex newborns should be given an assignment as a boy or a girl, depending on which of those genders the child is more likely to feel aligned with as she or he grows up. However, and most importantly, this gender assignment does not involve surgery. The organisation believes that genital ‘normalising’ surgery does not create or cement a gender identity; it just takes away tissue that the patient may later want. And in the years to come, it’s up to the individual to decide how they will be labelled: be that a ‘he’, a ‘she’ or an ‘intersex’.

The ISNA isn’t anti-surgery per se either. However, according to the ISNA website (www.isna.org), “surgeries done to make the genitals look ‘more normal’ should not be performed until a child is mature enough to make an informed decision for herself or himself. Before the patient makes a decision, she or he should be introduced to patients who have and have not had the surgery. Once she or he is fully informed, she or he should be provided access to a patient-centred surgeon.”

In other words, the group advocates acknowledging and supporting the individual with whatever choices they make over time. Unfortunately, this pathway of empowerment is still not part of mainstream practice when it comes to dealing with intersex babies.

ACCORDING TO Zoe Brain, a computer scientist studying at the Australian National University in Canberra, the question of how to respond, medically, to intersex babies is an ongoing issue. “Everyday — and it’s no exaggeration to say every day — there are infants and babies who are having their ambiguous genitalia corrected,” she says. “It’s believed gender ‘optimisation’ works in 60 to 70 per cent of cases, but in the other third of cases the outcomes aren’t so clear.”

Brain counsels people on intersex and transsex issues, and the debate is one that she’s been interested in her entire life, for good reason. It’s believed that Brain has a form of partial androgen insensitivity syndrome. This causes a variation in the development of the reproductive system as a result of a partial inability to respond to androgens (male hormones) during foetal development, although it’s not just one disorder but a broad range of conditions that often lead to an intersex state.

Brain was born as a genetic male with under-developed male genitalia. Her original name was Alan and, while having underdeveloped genitalia was stigmatising, the real problem for her lay in the fact that she always felt like a woman residing in the body of a man. This intensified already complex issues of identity, sex and gender because, while it’s easy to see and measure variations in genitalia, it’s more problematic to define what we mean by feeling and thinking like a man or a woman.

The Hopkins model of ‘gender optimisation’ suggests gender identity can be shaped if the physical form is surgically modified early enough and the child is then treated as being that gender. However, there’s increasing evidence to support the theory that gender is hardwired into the brain early in the development of the foetus. Brain’s experiences certainly seem to bear this theory out (see ‘Zoe’s story’).

Zoe Brain’s case isn’t common; there may only be a handful of people around the world with her specific condition. But the issues she’s been dealing with cut across the whole debate of identity and gender. And at the heart of this debate it’s clear that strict definitions of what it is to be male or female cannot be justified by science, and are meaningless for those born somewhere in between.

See our boxout that goes with this feature – Case studies, read the full article here.

David Salt is a science writer based in Canberra, Australia, and a former editor of the science magazines Newton and The Helix.

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