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.”