Opening up about intersex

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      When she was getting her bachelor of arts degree at UBC, Nicky Phillips had all of the usual preoccupations of students, like studying for exams and going on dates. The Hamilton, Ontario, native wasn’t at all prepared to get the biggest shock of her life at the age of 25.

      She knew by then that she’d never have kids; when she was 16, she was told she had been born without a uterus. In university, she started looking into reconstructive surgery for her “shallow” vagina. Routine blood tests led to the staggering conclusion that she was chromosomally male. Further medical examination proved the blood work was right.

      “I was just praying that it wouldn’t be that,” Phillips says on the line from her Richmond home. “I didn’t like the idea of being male or having male chromosomes.”

      She found out that she had been born with testes, which had never descended. Her body didn’t respond to the hormones they secrete; as a result, her body was feminized.

      “I adjusted to it—or at least I thought I had,” Phillips says. “It hit me on an emotional level when I was 29. I needed to do a lot of soul-searching and a lot of crying and healing.” She went to Cortes Island for three months and grieved.

      That was in the early ’70s. Today, the retired social worker is happily married to a woman. She works to raise awareness of her condition, which is called androgen insensitivity syndrome and is just one of many diagnoses that fall under the umbrella term “intersex”. Another name for them is “disorders of sexual differentiation”.

      With AIS, newborns have female genitals that appear normal, undescended or partially descended testes, and no cervix. AIS women don’t menstruate and lack pubic and underarm hair.

      Congenital adrenal hyperplasia, which can affect boys and girls, occurs when the adrenal gland lacks an enzyme it needs to make cortisol and aldosterone, without which the body produces excess androgen. Girls can have genitals that appear to be both male and female (sometimes referred to as “ambiguous” genitalia), and they usually have abnormal periods and excessive hair growth. Boys often experience the early onset of puberty, with premature development of pubic and underarm hair, and they can have small testes or an enlarged penis. At birth, CAH can be life-threatening.

      Other intersex disorders include aphallia (the absence of a penis), clitoromegaly (an enlarged clitoris), and mosaic Turner syndrome, in which some cells lack all or part of the second X chromosome in females.

      Together, intersex conditions occur in one out of every 2,000 births in the United States, according to the Rohnert Park, California–based Intersex Society of North America.

      Misconceptions related to disorders of sexual differentiation abound. People born with intersexual conditions do not necessarily question their sexual orientation, for instance, and the term intersex isn’t the same as transgender.

      However, medical understanding of intersex conditions—and how to treat them—has come a long way since Phillips’s university days. According to the ISNA, starting in the 1950s it was common for doctors to perform clitorectomies on babies whose clitorises were deemed too big, while boys with very small penises were surgically turned into girls through castration and the construction of a vagina. To make matters worse, doctors and parents routinely concealed intersex children’s medical history from them, leading to physical and psychological problems later on.

      Daniel Metzger, an endocrinologist at B.C. Children’s Hospital, explains that although people understand the combination of XX chromosomes to be female and XY to be male, the development of sex in utero isn’t necessarily so clear-cut. Rather, there’s a “very complicated cascade of events” that takes place and involves genetic, hormonal, neurological, and other factors. Even environment can play a role: the theory that endocrine-disrupting chemicals are linked to hypospadias (in which the urethral opening of a penis is displaced) is gaining ground.

      The most challenging intersex cases, Metzger says, are those in which babies can’t be immediately or clearly identified as male or female.

      “It can be extremely tough, because”¦when you’re looking at chromosomes and waiting for hormone tests—some of them have to be sent across Canada—it can take a week to get results,” he says in a phone interview. “It’s frustrating for the family; they have a baby and doctors can’t tell if it’s a little girl or a little boy. It’s a very stressful time for everybody.”

      Such cases are rare; by Metzger’s estimate, there are about five a year in B.C. A team of doctors—endocrinologists, medical geneticists, urologists, gynecologists, sexual-medicine specialists, and mental-health professionals among them—works together to treat intersex infants and help their families make medical decisions.

      In some cases, surgery is deemed necessary. It’s common to remove the testes of AIS patients, for instance, since they pose a cancer risk. The ISNA, however, states on its Web site that all surgeries should be postponed until people are old enough to be informed about their situation and make their own decisions. The organization also encourages parents to raise their child as the sex it’s most likely to identify with, rather than trying to match their kid’s gender to her genital appearance.

      “Generally, health professionals are being far more conservative about medical intervention than in decades past,” says Dr. Stacy Elliott, director of the B.C. Centre for Sexual Medicine. “It’s about letting kids find their own identity.”

      Elliott, who’s also a professor in UBC’s psychiatry and urology departments, says that many of her patients are people who had surgery when they were children and now have concerns about their sexual function and sensation, as well as questions about gender preferences and identity.

      “The truth is that with sexual preference, really, everyone has those issues,” Elliott says in a phone interview. “Some people feel more male than female.”

      Gerald N. Callahan, author of the just-released book Between XX and XY: Intersexuality and the Myth of Two Sexes (Chicago Review Press, $27.95), says that gender is essentially a label of convenience in a society that demands order.

      The professor in Colorado State University’s microbiology, immunology, and pathology department explains that intersex conditions occur in other species besides human beings. The chalk bass, a type of sea bass, for example, can go from releasing eggs to providing sperm within 30 seconds; it then reverts back to being female once a larger male comes along.

      “Not all of the animal kingdom is divided into male/female as we imagine humans to be,” he explains on the line from Fort Collins. “It’s not an on-off switch but more like a dimmer, just the way there are variations in eye colour.

      “In one sense, we’re all intersex,” he adds. “Where else in all of humanity do we demand that we fall into one of two spaces?”

      Many parents of intersex babies worry about whether their kids will feel comfortable in their own skin as adults, says Elliott, who also sees anxious moms and dads in her practice. She adds that adolescents with intersex conditions often struggle with issues such as feeling different and not knowing who among their peers they can tell, if anyone.

      “There are a lot of psychosocial stressors on this whole population that we have to be very compassionate about,” Elliott says, noting that the shame and secrecy surrounding the disorders only make them harder for people to deal with.

      There’s nothing Phillips would like to see more than for the stigma associated with intersexuality to be eradicated.

      “I’d really like people to understand it’s just a condition, a medical condition,” says Phillips, who’s the local contact for the Canadian AIS Support Group. “It’s something that happens. I’d like people to understand that, hey, gender is not one or the other. We have this myth that it’s got to be one or the other when, in fact, it’s a continuum.

      “In the AIS community, I’d like to get this secrecy out”¦so that it’s safe for intersex people to come out, to become comfortable enough to be open and aboveboard about this.”

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      4 Comments

      Dolly Dagger

      Jul 30, 2009 at 11:19am

      Why is Turner Syndrome listed as intersex?
      I'm more than familar with the condition, have been to many conventions. Intersex has never been a discussion topic although many other things have. People don't seem to be shy about anything, so I think it would be discussed at the very least. The only times I've seen TS and intersex together, has been stories about intersex. Stories about TS don't mention intersex.

      Joshua

      Jul 31, 2009 at 7:08am

      @Dolly Dagger: TS does sound like a disorder of sex development.

      "Turner syndrome encompasses several conditions, of which monosomy X (deletion of an entire X chromosome) is most common. It is a chromosomal disorder in which all or part of one of the sex chromosomes is absent. Typical females have 2 X chromosomes, but in Turner syndrome, one of those sex chromosomes is missing or has other abnormalities." Source: http://en.wikipedia.org/wiki/Turner_syndrome

      TinaSD

      Jul 31, 2009 at 9:44am

      Dolly,

      It is nearly impossible to discuss any matters of variations in sexual development without coming up against rigidly held belief in a binary-only classification system that only pays heed to people's innate gender identities when it serves that paradigm.

      In the case of Turner Syndrome, it affects the sex chromosomes, gonadal development, reproductive abilities, and some secondary sex characteristics...all hallmarks of an intersex condition.

      But since those affected are nearly unanimous in feeling an innate sense of being female, some activists have decided to declare it not an intersex condition regardless of the underlying science- and since that helps affirm an antiquated binary *only* sex/gender model that is losing credibility daily, those heavily invested in that model don't say anything.

      Contrast this with Klinefelter's syndrome, where people with an XXY karyotype are treated by medical professionals as being males with an extra X chromosome...even though many of them have a life long and pervasive innate sense of being female.

      Those individuals more often than not face strong resistance to that idea from mainstream medical types and are often left no choice but to declare themselves transsexuals should they not ID as male- even though by clinical diagnostic standards, an IS person cannot be a transsexual...again, when faced with a glaring contradiction to their own standards, the medical profession is happy to allow it as long as these people agree to calling themselves mental cases and help shore up that old gender binary.

      As you can see, when some IS people's gender ID matches their birth assignment and supports the prevailing binary model that says Turner Syndrome is a genetic defect in *females*, that gender ID is held up as trumping the genetic component of the binary model that says 'female = XX' chromosomes...

      but when an individual with KS doesn't agree with their birth assignment and defies the prevailing binary model that says Klinefelter Syndrome is a genetic defect in *males*, the genetic component of the binary model that says ' Y chromosome = male' is held up as trumping their innate gender ID.

      You can make anything be anything when the rules and definitions change based on how the wind blows...the Turner activists in question seem to believe that "intersex" carries with it some absolute requirement that one have a gender identity in conflict with their sex assignment at birth or else they aren't intersex, which is nonsense.

      Westcoastlife

      Oct 17, 2009 at 9:19pm

      Dolly, it was not Turners Syndrom, but Mosaic Turners. Turners is usually X0 or x (partial x). However Mosaic Turners is when part of the body is x(partial x)/ X0 while the rest is EITHER xx or xy, only Mosaic Turners with some of the body being xy would classify as intersexed.