The way we cope with Caster Semenya, the South African athlete of disputed
sex, is to tell ourselves that she is nothing like us, nor anyone we know,
nor anything we are likely to know. She is, in the court of public opinion,
a freak, no matter what the news is from the International Association of
Athletics Federations tomorrow.
So would it surprise you to know that every other day in Britain a baby is
born looking different enough that doctors cannot instantly tell its sex?
Would it make you feel less safe in your opinions if you knew that for 1 in
4,000 expectant parents a year, there is no answer to that first question:
is it a boy or a girl? That almost certainly someone you know has started
off his or her life like this? That, when you take into account the more
subtle disorders of sexual differentiation, it becomes apparent only at
puberty or later, as is the case for Semenya, and the rate doubles again?
That children with physical problems such as this are one of medicine’s
best-kept secrets?
Sit down and steady your nerves. Because after that first shock, there is
another one. The outrage over Semenya has got British doctors angry. For it
jeopardises one of the most progressive medical experiments of the 21st
century. Very quietly, very delicately, the NHS has become world pioneers in
this unexpected field. And what makes our team of specialist consultants so
radical, when faced with a baby of ambiguous genitals, is how little they
are doing to alter that, rather than how much.
Britain is the first to base treatment on the assumption that it should be
acceptable for boys and girls to look far from “normal”. That doctors may be
better off doing nothing to “fix” the kind of confusing genitals that incite
laddish, locker-room bullying. This approach asks provocative questions of
the rest of us. What makes us the sex we are, and what makes that so normal
in the first place?
“These conditions are relatively common,” says Professor Adam Balen,
consultant gynaecologist at Leeds General Infirmary. “I wouldn’t say they
are hidden because that is an emotive term, but we’re obsessed by sex, and
whenever sex is raised all of a sudden a prurient angle comes into it. We
are not open enough in our society to discuss the variations that come with
disorders of physical development.
“How do you define your gender? Is it defined by sex chromosomes? Not always.
Is it your sex hormones? Not necessarily. Then what?”
Victorian doctors studied “hermaphrodites”, but that term is outlawed now, not
only because of its offensive whiff of the circus freak but also because it
is medically inaccurate (they have male and female genitalia, whereas often
it is more complicated). Then, in the 1960s, the term “intersex” was coined.
It’s still championed by some today despite unhelpful associations with
“transsexual” (intersex conditions are biological rather than psychological
— genetic or hormonal, or both).
It was at this point in the 1960s that a US doctor called John Money, when
presented with a baby boy with a botched circumcision, decided to make
“John” into a “Joan”. It was, as surgeons put it, simply easier to “make a
hole rather than build a pole”.
Money’s experiment was fictionalised in the prize-winning bestseller Middlesex,
by Jeffrey Eugenides. Money’s theory — that the child would develop a sexual
identity that would fit whichever shape the surgeons fashioned its genitals
into — was to dominate the world’s medical establishment for the rest of the
20th century. Until it was challenged by UK doctors.
When Sophia, 45, from Brighton, was born with a genetic condition (called
5-ARD) that made her sex initially unclear, her parents were told nothing.
This secrecy by the medical teams was absolutely standard. “They didn’t know
what I was, but all they said to my parents was, ‘there’s a problem, we’re
doing some kind of repair’.”
She was sent home to an almost impossible life. Her parents were told she was
a boy, but they “picked up something strange was going on”. Meanwhile the
botched “repair” made life as a boy utterly miserable.
In adulthood Sophia now lives (“exists” is the word she uses) as a woman,
campaigning passionately against surgery to “normalise” babies. Wouldn’t it
be kinder, I ask, to make a child less different in the eyes of their peers,
to spare the taunts? “That argument is countered by the messiness the
surgery itself causes,” she says.
Laurence Rangecroft, a recently retired consultant paediatrician who
specialised in these cases at the Royal Victoria Infirmary in Newcastle,
remembers the days of the hush-hush operations. “Surgeons used to think,
‘There’s a problem, we need to correct it’, and that’s
what they, with the best of intentions, enthusiastically set out to do. But
with any operation that is complicated and difficult to perform, you’re not
always going to get good results.”
Then, in 1997, Money’s star patient, “Joan” went public with his story. Not
only had he reverted to his male identity as soon as he could, but his life
had been blighted by Money’s treatment. His male twin had died of an
overdose, and he himself committed suicide in 2004.
“In the US, surgeons got very scared,” Rangecroft says. Corrective surgery
looked risky, but so did the alternative. “With fears of litigation, with
either course of action, I had one surgeon say to me, ‘It’s reached a state
of paralysis, people don’t know what is the right thing to do any more’.”
Enter Sarah Creighton. As a gynaecologist at University College Hospital, she
was the first to set out to compare those whose doctors had, at birth,
attempted to “normalise” their genitals, and those who had no surgery.
Nobody had followed up on patients in the past, as, cloaked in secrecy,
doctors had concealed the truth from parents and child.
But she tracked them down and her groundbreaking study in The Lancet
found that those who were left as nature made them fared as well, if not
better, than those who had been normalised. Being yourself was more
important than being like others.
Take Gordon, a man who lives on the north coast of Britain, who “was a male
child with ambiguous genitals”. Unusually for his time, he escaped surgery.
He was raised as a girl until the age of 3, because of a genetic condition
that drastically lowers testosterone levels. Then he was brought up,
unhappily, because of changing-room bullying, as a boy. “I always had this
idea that I had sisters that I was detached from. It has occurred to me
that, since I was dressed as a girl as a baby, I was feeling detached from
myself.” His condition was diagnosed and treated only in his middle age,
after a lifetime of struggling to succeed in a macho family, school and
workplace — never “feeling or acting right”. “Typical males would consider
me a sad specimen. But my girlfriend thinks it’s great.”
So, on reflection, he is glad he was not “corrected” at birth. “I see a
society that doesn’t want to admit variation exists.”
Creighton’s findings were to start a British-led revolution: first, telling
parents the truth about their child’s ambiguous-looking sex and, even more
radical, saying that perhaps he or she could stay that way. Creighton backs
the statistic from the Scottish study: that one baby in 4,000 is sexually
ambiguous at birth. “It is difficult, as the first question any couple ask
at birth is, ‘what have we got?’” she says.
Now, instead of paternalistic bluster, the doctor is trained to reply, “We’re
not sure yet”, and refer to one of the major centres — University College
Hospital, London, for the South of England; Balen’s team in Leeds for the
North — for a battery of tests and genetic analysis.
This is a shocking time for parents — a 2006 survey by the Scottish Audit of
Genital Anomalies found that 95 per cent of parents were desperate for more
information on the condition after the birth. Most were extremely worried
about “ridicule and stigma” for their baby and the difficulty of discussing
it with friends or relatives.
“It can take days or weeks to determine the sex — the limit on naming a
child is six weeks and sometimes that has to be extended,” Creighton says.
What about relatives, clamouring to know the baby’s name?
“We advise parents to say the baby’s poorly, they are awaiting tests. All
children are then allocated boy or girl, but much more controversial is: do
you proceed to surgery? That is hard to undo. We tend to think that surgery
is all-powerful and by having surgery you have a cure. These aren’t
conditions that you can cure.”
So for the past ten years British parents have been discouraged from surgery
purely for reasons of social acceptability, thereby allowing the child a
decision when they are older. It’s not always easy. One surgeon said the
parents of a genetic girl, with an enlarged clitoris, were begging him for
surgery, “rather than the other way around”. Creighton says that the risks
have to be carefully explained — surgery will affect any future sex life,
for example.
“We are leaders in this field, worldwide, in terms of disclosure to the
parents and child, and challenging surgery,” she says.
So a generation of children, now coming up to puberty, are facing their own
choice about whether they want to look like a normal man or woman, or remain
as something far more unusual. They are pioneers.
“It is now as adolescents that they are getting the full information. It’s a
stormy time for all teenagers, but it’s really difficult for them,”
Creighton says.
Everyone I talk to believes that the new strategy is right, after many decades
of getting it wrong. But it is uncharted waters. A few years from now the
first of the new generation will be able to tell their own story. Are we
ready for what they will say?
At the end of the novel Middlesex, the mother of the hero tells her it
would have been easier to hide her condition, remain the way she was. “This
is the way I was,” is the hero’s reply. When I ask Sophia, in my blundering
way, which sex she is, genetically, she replies: “Genetically, I am me.”
When the sex changes
Three years ago Santhi Soundarajan, the Indian athlete, was stripped of
a silver medal at the Asian Games after failing a sex test. Later the
25-year-old was reported to have attempted suicide, although she denied the
claim. She has since set up her own youth sports academy. “A test cannot
take away from you who you are,” she said.
Erika Schinegger was preparing for the 1968 Winter Olympics when a
routine medical test determined that the Austrian skiing champion was
chromosomally male. He was disqualified. For Schinegger, the tests confirmed
doubts that had plagued him since puberty, and soon Erika became Erik. He
continued to ski, but has spoken of his feelings of isolation and depression
during the process of alteration. “Not one team mate visited me during the
six months that I was in hospital undergoing the operations. The federation
didn’t allow it. A lot of people ran away, best friends included.”
Fiore de Henriquez, the Italian sculptress, was brought up as a girl
but during her teens, as she began to menstruate and develop breasts, she
discovered that she also had male genitalia. She lived as a woman and only
revealed her secret near the end of her life. “My mother used to call me a
monster,” she said. “But I didn’t feel like a monster.”
She was the hard-drinking, cros — dressing, gun-toting frontier cowgirl — and
some scholars believe that Martha Jane Canary-Burke, better known as Calamity
Jane, was “intersex”. But the rumour has never been proved and as she
had two children, other historians say it is unlikely.
As a child, the writer Lady Colin Campbell preferred to play with dolls
but her malformed genitalia persuaded her parents to raise her as a boy
named George. She describes puberty as “like a glimpse into the bowels of
Hell”. At 21 she had corrective surgery and officially became Georgia.
Chloe Lambert
Your Comments
Order By: