Gênero e Esporte

Breaking down the myth of two sexes

http://www.vancouversun.com/health/Breaking+down+myth+sexes/2011849/story.html

Nicky Phillips never thought of herself as anything but a girl.

As a child, growing up in the 1940s and ’50s, she wore little-girl dresses, shiny shoes, and bobby socks. When she got a bit older, she started to wear lipstick and pearls and fuss about her hair.

Puberty brought with it the same uncertainty and awkwardness it brings most young women. But in Phillips’s case, her body wasn’t changing in the same ways it was for other girls.

She never got her period. She didn’t grow any underarm hair and had very little pubic hair. But she had an aunt who also never menstruated, so she never thought of it as anything out of the ordinary.

In her teens, she found out she didn’t have a uterus and would not be able to have children.

But it wasn’t until she was in her mid-20s that blood tests ordered by a doctor at Vancouver General Hospital showed Phillips was not the girl she thought she was.

"If you did a genetic test on me, you would find I’m 100-per-cent male," Phillips said this week from her home in Richmond.

"But to see me, you’d have no idea."

Phillips has a rare condition called Androgen Insensitivity Syndrome. It’s one of several conditions that fall into the wider category of disorders of sexual differentiation, or DSDs.

People with these disorders are commonly referred to as hermaphrodites, but the term is not only considered offensive by those with DSDs, it is also wrong. In some circles, they are called intersex, but that term, too, has been deemed inadequate because it indicates a state of genderless limbo. Nearly all people living with these disorders identify themselves as either male or female, even if their chromosomes and/or genitals say otherwise.

Caster Semenya, the South African runner whose gender has recently been questioned in headlines around the world, always thought of herself as a girl. She confidently insisted she was female after doubts were raised about her gender when she won gold in the 800-metre race at the 2009 World Championships in Athletics in Berlin.

THREAT OF PUBLIC RIDICULE

But early reports about the results of a gender test ordered by the International Association of Athletics Federations indicate Semenya may not have ovaries or a uterus, and may have internal testes. Those reports have not yet been confirmed by the IAAF or Semenya herself, but Phillips has sympathized intensely with the young athlete as she has been forced to endure public ridicule and misunderstanding during what should be a private medical process.

"My heart breaks for this young woman," Phillips said. "What really upsets me is there is so much shame and secrecy about all DSDs.

"It’s a societal thing. Everyone has this shock and horror attitude when they hear about it, so it’s not safe to come out."

Not only is there the threat of public ridicule -- and even violence -- against someone who is labelled hermaphrodite or intersex. But there are equally significant concerns about a person’s risk to themselves.

There have been reports in recent days that Semenya is on suicide watch.

Two years ago, an Indian 800-metre runner was stripped of her medal at the Asian Games after "failing" a gender test. The tests found she has Androgen Insensitivity Syndrome -- the same condition as Phillips -- and she reportedly attempted suicide after the ordeal.

Phillips, who is now 66 years old, doesn’t hide her frustration when she talks about society’s attitudes toward intersex people.

"It’s time society grew up about gender," she said.

"Gender is not an either/or. There is a continuum and somehow, we all fit along that continuum."

No hard statistics are kept on the number of people born intersex in Canada or the United States, but it is estimated that one in every 2,000 people is born with some type of DSD.

In British Columbia, it is estimated that about five babies are born each year with a DSD.

But Dr. Daniel Metzger, an endocrinologist at B.C. Children’s Hospital, says those figures depend on how you define intersex.

INTERNAL TESTES FOUND

There are five major types of DSDs, with several subtypes that vary widely in physical presentation. Some doctors might count a condition as a DSD, while others would not. For example, some doctors might count an unusually large clitoris or small penis as a DSD, while others would not.

Metzger also notes that not all DSDs show up immediately at birth, as Phillips is well aware. In her case, when she was born in Hamilton, Ont. in 1943, doctors thought she had a double hernia in her lower abdomen. They "repaired" the hernias by pushing the two lumps deeper into her abdomen and sent her home.

It wasn’t until Phillips was in her late 20s that doctors discovered -- through exploratory surgery, because ultrasound still wasn’t available -- that the two lumps were actually internal testes.

She is grateful the testes weren’t removed because, oddly enough, their presence in her body allowed her to develop breasts as a teenager.

"I’m really glad they left them in because it allowed me to feminize," she said.

Similar to what happens in some teenage boys who develop breasts, her body produced excess testosterone, which was converted into estrogen because people with AIS do not respond to androgen, or "male" hormones. Her testes have since been removed, as they posed a significant cancer risk.

Phillips’s condition is the result of an inherited genetic disorder, which explains why her aunt had it also. Her grandmother would have been a carrier, as would her mother.

But not all DSDs run in families.

Congenital Adrenal Hyperplasia, which is one of the most common DSDs, is the result of the body lacking a certain enzyme. Without that enzyme, the body cannot produce cortisone -- which is necessary for life -- and instead makes testosterone, Metzger said.

Babies with unusual genitals are routinely tested for CAH, as it is a life-threatening condition, but not all babies with CAH present with visible manifestations of it.

"Little girls are generally easy to figure out because their genitals look boyish. They’ll have a large clitoris, for instance," Metzger said.

"But little boys [with CAH] don’t necessarily look different from other little boys."

B.C. will soon start testing all newborns for CAH, Metzger said.

The term hermaphrodite is still widely used by the general public, but is technically wrong, as it suggests having both male and female genitals.

"What we used to call true hermaphroditism is an extremely uncommon condition," Metzger said.

"To have it, you basically had to have both testicular tissue and ovarian tissue and that’s very, very rare. But people would use the term hermaphrodite to mean anybody whose body is a little bit different.

"The connotation that you’re a little bit of everything is wrong because most of these people feel they’re either a man or a woman and they don’t have any confusion about that."

But gender identity is something entirely separate from sexual orientation, Phillips pointed out after openly discussing her own relationship.

SEXUAL FRUSTRATION

Phillips is married to her partner, Leslie, who is a transsexual woman. Leslie was born male, but "surgically became a woman" in 1992, before the two met. They consider themselves a lesbian couple, but Phillips notes that many women with AIS are in long-term heterosexual relationships with adopted children.

Their relationship developed slowly out of a friendship. Before meeting Leslie, Phillips’s dating experience was mostly with men, although she said she had always been attracted to both men and women.

It was at a lesbian support group meeting the couple attended back in 1998 that Phillips first came "out" to a group of strangers -- out of frustration, more than anything.

She revealed her genetic makeup after the group facilitator announced that the group was only for women who were born female. Outraged for her partner, Phillips first told Leslie’s story. And then summarized her own.

"My ears started to steam and I said, ’Let me get this straight. Are you telling me you’re not accepting someone who identifies as a woman, but wasn’t born that way?’" she recalled.

"I said, ’Look. This is my situation. I’m physically female, but genetically male. What do you want to do with that?’"

The couple did not stay for the rest of the meeting, but Phillips decided she would start to speak openly and honestly about her condition with hopes of reducing the shame, secrecy and ignorance that surrounds intersex conditions. She remains the only intersex person she knows of in Canada who is willing to be photographed and quoted with her full name.

NOT BLACK AND WHITE

Phillips is one of four intersex people featured in a new book by Gerald Callahan, Between XX and XY: Intersexuality and the Myth of Two Sexes.

Callahan, a professor in Colorado State University’s microbiology, immunology, and pathology department, says gender is not black and white, but more like a dimmer switch, with different shades of grey.

"If you look at the chemistry that’s involved in the process of giving a fetus a sex, that chemistry is really variable. There’s a little bit of an enzyme here or a lot of an enzyme there; there’s a little bit of a hormone here or there’s a lot of a hormone there," Callahan said in a phone interview.

"So the whole thing really comes together just like the length of our fingers, our fingerprints, the shape of our ears.

"It’s a little bit different in every person and in between what we think of as the all-male male and the all-female female, there is a whole spectrum of people with varying amounts of male-ness and female-ness mixed together."

Callahan acknowledges that society is still a long way from accepting intersex people, but says the intolerance is largely due to a lack of information.

"I think we need to change the way we teach biology to kids," he said.

And as unfortunate as the Caster Semenya case is, both Callahan and Phillips hope it sheds some light on the intersex issue and promotes understanding about a long-misunderstood condition.

aobrian@vancouversun.com

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