The Weekend Australian newspaper, 8-9 December, 2001.
By Christine Toomey
Imagine if you'd grown up thinking you were female and discovered at 20 that, genetically, you were a man. Imagine you are a happily married man of 29, whose only problem is that your wife is failing to conceive, and that tests reveal the problem lies with you - your genes are 100 per cent female. Or you discover your parents had been advised by doctors never to tell you there had been doubts about your gender, or that surgeons operated on you and did not tell you the real reason for the surgery. These people were born with a medical condition called intersex, and their stories are not as unusual as you might suppose. The large brown envelope that made sense of Melissa's troubled past arrived in the post shortly after her 18th birthday.
Melissa took the package to the privacy of her bedroom before breaking the seat on information she hoped would explain the feelings of shame and secrecy that had dominated her childhood, and the reasons for the repeated gynaecological surgery she had endured. She was shocked and angered by what she read.
As Melissa was growing up, she had been told that she suffered from a rare metabolic disorder that caused her body to lose excessive amounts of salt and led to her being placed on medication she would need for the rest of her life.
She knew she had been a small, sickly baby who had not been expected to survive. She knew the condition she was born with was called congenital adrenal hyperplasia (CAH). What she was not told, but discovered from the information sent to her, was that CAH is an "intersex" condition. She had been born of mixed gender, with ambiguous-looking genitalia, neither wholly female nor male.
"I was told as I was growing up that something was 'not quite right down there'. But I was also told not to ask too many questions. I thought it must be something horrible," recalls Melissa, now 33 and living in Britain. "My mother just told me that I should always use a cubicle to change at school and that nobody but a doctor was ever allowed to touch me."
When Melissa confronted her mother and asked her why she had never been told the truth, "She said she thought the truth would upset me," says Melissa. "She told me for the first time that doctors had thought I was a boy when I was born, and that she and my father had named me Nicholas."
But when doctors pumped dye through her genital tract when she was three weeks old, they discovered Melissa had a womb and ovaries. My parents were told I was a girl after all, but that I would need surgery to 'normalise' things. I was devastated. Not that I was intersex, but that I had been lied to."
After requesting her medical records, Melissa discovered that the operations she had undergone as a baby, and later at the ages of four, 12 and 14, involved a complete removal of the clitoris - hers was considered too large. She also underwent extensive reconstruction of her vagina. "The outcome," she says, "was a mess."
Those born with intersex conditions are often referred to, incorrectly, as hermaphrodites. True hermaphrodites (people born with both sets of genitalia) are comparatively rare. Intersex covers a much wider spectrum of medical conditions, including chromosomal abnormalities in which a person's genitals do not match the chromosomes, or do not conform to male or female norms.
According to some estimates, as many as one in 2000 babies is born with one of these conditions. If accurate, this means that more babies are born intersex than are born with cystic fibrosis, the incidence of which is one in 2500.
Some doctors prefer a stricter definition of the term, so argue that this figure is exaggerated. Others believe it is a conservative estimate, arguing that the condition may go undetected or unreported because of its delicate nature. Beyond doubt, however, is the culture of shame. In the past, and sometimes still today, doctors have preferred to draw a veil of secrecy around the treatment given to people with intersex conditions, on the grounds that the truth would be too traumatic for the patient.
In Britain, it is "still regular practice in some units not to tell patients their diagnosis", according to Sarah Creighton, a consultant gynaecologist at University College London Hospitals (UCLH), who specialises in the treatment of intersex patients.
"I see many letters sent from consultants to GPs - particularly concerning the treatment of women - saying, 'She is fine. She does not know her diagnosis and I do not feel it is appropriate for her to learn it, as it would be devastating' ."
Treatment of intersex conditions in Australia is, by comparison, enlightened, according to the medical community, and regarded as progressive by world standards. Professor Garry Warne, paediatric endocrinologist at Melbourne's Royal Children's Hospital, says full disclosure to patients is the norm. "If you asked all paediatric endocrinologists in Australia, I don't think you'd find one that would defend non-disclosure of intersex conditions, he says. "Since at least 1985, this has been the case." Growing pressure from patients who believe their lives have been ruined by surgery performed without their consent may change medical practices around the world. Angry patients have called for a moratorium on early intervention surgery.
The only circumstances in which early genital surgery should be performed, they argue, is if a condition leads to medical complications - undescended testes can, for instance, cause hernias, and testicular tissue can, in some intersex patients, become cancerous. Intersex individuals - and a growing number of doctors who treat them - argue that those born with such conditions should be allowed to decide which gender they most identify with when they mature. This has made intersex management the focus of heated debate. The British Association of Paediatric Surgeons recently set up a working party to look at new guidelines for the treatment of babies born with intersex conditions, and is expected to advise against early genital surgery.
An Australian study, soon to be launched by Warne, will collate the experiences of every intersex patient to have sought treatment at Melbourne's Royal Children's Hospital and learn from the outcome. "We don't believe there are very many patients who have experienced a poor outcome as a result of early surgery," he says. "But we could be mistaken, and we're prepared to wear that if it's the case and completely revise our policies."
Some of the controversy surrounding treatment is about what constitutes aesthetically acceptable genitalia. "Part of this debate is about how we can balance the rights of the individual against the pressures that will be brought to bear on that individual because of their appearance," says British endocrinologist Peter Hindmarsh. "Medicine does not usually accept the views of society if they are in conflict with the needs of the individual. But we seem to need a categorical statement about a person's sexuality. Anything to do with sexuality and the propagation of the species touches on a very deep nerve."
Sexuality and gender are so fundamental to our lives that some believe that if the distinction between male and female is called into question, society will be thrown into confusion.
Such attitudes start at birth when parents ask: 'Boy or girl?' If there is no clear answer, the medical establishment sets out to create one. When an intersex baby is born in Australia, surgeons, geneticists, endocrinologists and clinical psychologists form a team to decide, usually within days, what sex the child is to be designated.
The parents, says Warne, are provided with information and all the options that they could consider, including that of the body of advocacy for leaving the condition untreated for the time being. "If a family did choose that option, we would fully support them, and we would have to bring in a lot of extra supports to make sure that it was in the best interests of the child, particularly psychologically, in the longer term. But, personally, based on the experience I've had with children who have been allowed to grow up with ambiguous genitalia, I'm not convinced that that is always the right option." The traditional medical response has been based on the assumption that normality is essential for parental and social acceptance, and happiness. Such thinking is rooted in a history that has often been cruel to people born of ambiguous sex. The Romans put them to death to pacify the gods. The Victorians treated some as circus freaks, others as mentally ill.
In some Eastern and Caribbean cultures, however, they are revered as expressions of divine will. The arts have traditionally cloaked ambiguous sexuality with the Greek myth of Hermaphroditus, son of Hermes and Aphrodite. The nymph of the fountain of Salmacis considered him so beautiful that she begged the gods to merge her body with his, thus a being, half-man, half-woman, was born.
But in the West since the 1950s, the standard medical procedure for treating a child born with ambiguous genitalia has been to assign a gender quickly and perform whatever surgery is necessary to ensure as close as possible conformity to a norm. The criterion used is that if an infant's sexual anatomy protrudes away from the body by more than 2.5cm, the baby is considered male; if the protrusion is under 1cm, the baby is female. In cases that fall between these criteria, surgery is recommended, and babies are usually rendered female using the crude logic that, as described in one medical journal, 'it is easier to dig a hole than build a pole'.
The practice of assigning female sex to boys with small penises was pioneered in the United States in the 1960s by a psychology professor, John Money, who argued that nurture was more important than nature and that gender was so malleable in infancy that a male consistently raised as a girl would adapt well to life as a female.
He based his theory on the study of a highly publicised case of a boy whose penis was destroyed in a botched circumcision. The child was given rudimentary female genitals, renamed Brenda and subsequently raised, successfully, Money argued, as a girl. His thesis fell into disrepute when Brenda reached the age of 15 and threatened suicide if doctors refused to reverse the sex change surgery and prescribe him male hormones. He had always felt he was a boy, he told doctors. He is now married and a stepfather to three children. Since then, a growing number of doctors world-wide have begun delaying surgery until people are old enough to have a say in which gender they are assigned. In some instances, they argue surgery is not necessary. Support groups for those with intersex conditions believe there should be a network of specialist clinics offering advice on surgery and counselling.
Parents should be offered contact with a support group as soon as their intersex child is born, says Tony Briffa, president of the AIS (androgen insensitivity syndrome) Australia support group [website details were published at the end of the article - Ed] . "We had an example where a child was born with an intersex condition and a cleft palate," he says. "The cleft palate support group was contacted straight away, and a representative came to the hospital to talk through the problem and discuss the parents' options with them. The intersex condition was left to the parents to deal with alone." Sue Elford, who chairs a support group for those with CAH in Britain, believes parents too often come under pressure from doctors to allow surgery to be carried out on their child. If parents know they have the option to leave things alone and see how the child matures, a lot more would feel comfortable with this.
The culture of secrecy that surrounds intersex means that those not directly affected usually know very little about it. "People often confuse those with intersex conditions with transsexuals, which they are not at all," says Sarah Creighton. "Transsexuals are people who feel they should have been a male or a female but have no genetic or anatomical problem at all, whereas intersex people have medical problems caused by a mismatch in their genetic make-up."
Such confusion and prejudice means that those who do reveal they are intersex risk humiliation and discrimination; some report being beaten up, others have lost their jobs. "A common misconception people have when they hear about intersex is to think it means someone has something freakish or deviant about their sexuality," says Catherine Minto, a clinical research fellow at UCLH. "The more people know about what it means, the less they will react badly." Melissa is optimistic that society is slowly becoming more tolerant. She is hopeful of finding a partner and one day starting a family: "I grew up thinking I'd never be able to have children. Now I know that, with help, I might be fertile." The irony is that she sounds masculine. Melissa admits that her gruff voice has sometimes led others to make fun of her, and that her experiences as a child led to many problems as she was growing up. ?I was very shy. I'd rarely go out. I always felt out of place. Because of all the operations I had as a child, I could not bear to be touched for a long time. But I have always liked men.
"I have had a partner and a sex life." (Although she describes that experience as "atrocious".) "I just want a life," she says. "I do not feel as if I have had a life yet." Anna, 44, is sceptical of society becoming more tolerant. On the one occasion she explained her medical condition to an employer in Britain, she was met with extreme suspicion. "I was told that if I had been honest about my condition when I applied for the job, I would never have been taken on. After that, I leant to shut up." Anna was never told the truth about her condition or the real reason she underwent surgery at the age of 20. Years later she leant she was born with XY chromosomes, meaning she is genetically male. Anna discovered in medical journals that she had a rare genetic disorder called androgen insensitivity syndrome, also classed as an intersex condition. The lumps doctors removed when she was 20 were undescended testes. She has a feminine voice. She keeps her greying, curly hair short and swept back in a hair band. She never wears a skirt or dress. On the day we meet, she is dressed in jeans and a sweatshirt. She does not look masculine. She says she does not regard herself as either male or female but, rather, 'mixed gender', and has ended to avoid close relationships. "Society likes to categorise you, and I do not fit neatly with people's expectations. I just deal with it myself. I rarely talk about it. She then adds quietly, as if talking to herself. "It is like being continually punished for a crime I never committed."
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