- Intersex bodies are surrounded by a lot of misinformation and mythology
- Differences of anatomy may be evident at birth, later in life or not at all
- Intimate connections can be difficult due to shame, stigma or physical difficulty
- Experts advocate for early, honest communication with children born with intersex traits
There's a vocabulary of protection used around the intersex community -- of "escape" from sex assignment surgery to normalize their genitals, of PTSD and survivorship, of guilt from some whose bodies remain intact.
There's also a shared experience of shame, secrecy and disconnection borne of being treated like a physical mistake. They arrived in the world with genetic mutations that affect them at intimate levels, and were taught to believe, often since birth, that their very existence is a condition that needs to be corrected.
The path to romantic connection with another human can feel isolated and impassible. The risk, impossible.
But it doesn't have to be.
Activists like Bo Laurent, Jim Ambrose and Pidgeon Pagonis have made it their mission to guide people with intersex traits and differences of sex development, known as DSD, toward understanding their own worth in the world. They're demanding visibility and justice in a culture that has long mythologized, marginalized and misunderstood their bodies. And some of them are hoping to find love with someone who truly sees them.
"It's hard for people to wrap their head around what exactly is going on. It gets everywhere -- it's nothing but sprawl. It's not limited to the bedroom," says Ambrose, a writer and the co-founder of The Interface Project, a site that collects and shares personal stories of people living with an intersex condition or DSD.
So let's start in the classroom with a quick lesson on what intersex is not: transgender, though the two are often erroneously lumped together or the "hermaphrodite" of lore and porn, possessed of fully functioning (and physically impossible) male and female genitalia.
It's also not especially uncommon. A visible difference of sexual anatomy occurs in 1 out of every 1,500 to 2,000 births, according to statistics from the World Health Organization.
Medically speaking, intersex is defined as a congenital anomaly of the reproductive and sexual system. Katrina Karkazis, a senior research scholar at the Center for Biomedical Ethics at Stanford University, says that in most cases, people have a genetic mutation that affects development of sex organs. This might be evident at birth, later in life or not at all.
For example, in the case of people with complete androgen insensitivity syndrome, these women have XY chromosomes and testes. Their bodies produce testosterone, but because their bodies don't respond to it, the genitalia don't masculinize, and they don't develop masculine secondary sex characteristics such as increased muscle mass, a deeper voice and facial hair.
"They have XY chromosomes and testes and you wouldn't know that at birth because they are born with female genitalia," Karkazis says.
From the 1950s until recently, parents of babies born with atypical or ambiguous genitalia were generally presented one option: genital surgery. This is most often done to present the child as female because of doctors' beliefs that it's an easier outcome to achieve with available medical techniques. This often entails surgeries to remove testes, reduce organs that might present as a small phallus or an outsized clitoris, or add a vaginal cavity.
To parents -- shocked and confused by anatomy they don't understand, and envisioning a life of otherness and romantic rejection for their newborn -- surgery to "normalize" can seem like the most loving course of action.
In 1957, intersex rights pioneer Bo Laurent was born into a world of confusion. Medical professionals were "in a state of shock" for three days, unable to determine what sex she was, and her mother was kept sedated. Laurent was eventually labeled a boy, and her parents were dismissed from the hospital, unable to seek additional child care, lest their secret get out. When she was 1½ years old, another doctor decided to change her sex assignment so she could be raised as a girl.
"They performed a clitorectomy and they told my parents to move to another town and not tell anyone where they went and never tell me what happened," Laurent says. "All those things were so traumatizing, frightening and pain-producing for my parents that it made it hard for them to relate normally to me."
Alienated from her parents, withdrawn from her peers and deeply disconnected from her medically numbed and scarred body, Laurent avoided romantic and intimate connection with partners well into her 20s. Then, she started to seek answers.
The discovery of her intersex status finally offered a path into the world. Over the course of the past two decades, with her work as an activist, speaker and founder of the now-defunct Intersex Society of North America, Laurent has led others on a journey to connect body and soul -- their own and others'.
"One of the things I'm proud of is that I think that I've helped to provide frameworks to talk about it, narratives that are now available to other people," Laurent says.
Jim Ambrose is one of the people Laurent helped. Though he'd been surgically assigned as female as a baby, furthered by hormones and by additional surgeries his late teens, Ambrose, now 37, vividly recalls how different he felt from the other girls, even at an early age.
"I remember the first girl in my class wearing a bra and I reacted exactly as every other boy in the class did," he says. "I was enamored and fascinated."
Unconsciously, he knew that the interest didn't spring from girl-to-girl solidarity or a glimpse at his future. Watching a school-mandated sex-ed film about menstruation, he thought, "I don't think this is ever going to happen to me."
It didn't, of course. Ambrose's mother disclosed the reason when he was 12 and estrogen treatments soon followed.
Neither did he experience the sexual connections his peers were making.
At 16, Ambrose -- still perceived as female by his peers -- had a girlfriend ("by default," he jokes, rather than a drive to romantically bond). He studiously kept her away from his intimate parts. In retrospect, it was out of self-protection. While the girlfriend never argued, she did confess to mutual friends that the distance "weirded her out."