Zachary (not his real name) was born without a fully developed penis. Today, at age 32, he has the gentle look of an aging hippie, talks softly, and looks forward to his annual trips to Burning Man. He grew up in a small town in Oregon, went to college, traveled the world, and chose a profession in Portland as a provider of complimentary alternative medicine. Two years ago, he got married. But what makes Zachary's case so noticeable, is that he never had any surgeries in order to build him a more "normal" penis (though he has had several cosmetic surgeries to assist him in urination).
"Luckily, my parents were very open-minded, very resistant to conventional medicine," Zachary explained. "They always just thought, 'If he's doing okay, why change things?'"
According to the Intersex Society of North America (ISNA)--a non-profit, non-medically based organization of intersex individuals--the attitude of Zachary's parents is very unusual. The official purpose of ISNA is to bring about "systemic change to end shame, secrecy, and unwanted genital surgeries for people born with anomaly of the reproductive system"; basically, ISNA works to end unnecessary surgery on intersex children. Their solution? Assign the child an initial gender, wait until the child is older, explain the truth, and let them decide what gender they want to be, and if they want any surgeries or hormonal treatment.
"Most of the medical community works on a model that is concealment-centered, rather than patient-centered," says Emi Koyama, an ISNA activist. In short, doctors want to make abnormal genitals appear "normal." So they perform surgery and try to convince children that they're just like every other little boy or girl.
"Say you're born a girl with testes," explains Emi. "What doctors would probably advise is having the male gonads completely removed, and then giving the person estrogen. But who's to say that's right for the child?" she asks. "Many times these surgeries are done when the child is less than one year old. Why can't the child wait and make the decision?"
Often times, according to Emi, the surgeries are performed on men who are born with a penis that is too small--essentially an attempt to turn the boy with a small penis into a girl. Or, if one is born a girl with an extremely large clitoris, surgery is often performed in order to reduce the size. Not only do these surgeries often force people into an undesired gender, causing extreme psychological distress later on in life, but, ISNA argues, they can cripple the patient into reduced sensitivity and nerve damage--often times rendering them unable to achieve orgasm.
"The goal of the surgery is to give boys the ability to urinate standing up, and to give girls the ability to receive penis," says Emi. "It's ridiculously oversimplified."
As Emi explains it, no matter how much surgery intersex people have, they're never exactly congruous with their assigned gender. This often leads to severe psychological problems, problems that are made much worse when they have no idea of the cause.
But even if doctors could find a way to create perfectly functioning genitals, explains Emi, ISNA thinks surgery would still be a mistake. "The goal is not about changing the body," she says emphatically. "The goal is about accepting the body as it is."
That's not to say that being intersex is easy--even for Zachary. "I had a lot of shame about my body, growing up," he explains. "I hid in the locker rooms at school. I dreaded the showers. I ended up on the fringe of the social circles."
Even so, for Zachary, acceptance of his own body as intersex has informed almost every aspect of his life. In college, he studied medicine, and the way it's practiced in different cultures. That path led him to his career in alternative medicine. Because of his shame, Zachary didn't really discover his sexuality until he was in college. He was scared and repressed for a long time.
"I learned, slowly, to trust people, but intimacy came slow to my relationships," as he explains it. When he was 25, while visiting San Francisco, Zachary read an article in a local weekly about a woman named Cheryl Chase, one of the first intersex individuals and activists, who was reaching out to other people like herself.
"I had just never heard about anything like this," says Zachary. "I sat down and wrote her a five-page letter, told her my whole life story." Cheryl wrote back, and soon Zachary was talking with other intersexuals around the country. By the early '90s, there were only approximately 25 other intersexed people in touch with Cheryl. Even with that small number, it was the most organized intersexual movement in the world.
"The stories of abuse that I heard from those people, of the extreme shame that went along with them; people knew there was something different about them growing up, but never what it was--I couldn't believe it," says Zachary. "It was such an awakening."
To Cut or Not to Cut
Dr. Ron Rosenfeld works out of a spacious, mahogany-paneled office at OHSU. He's a confident, friendly man, who speaks with the slow articulation of someone who knows his work like a textbook. Rosenfeld is a pediatric endocrinologist, which means he deals with children with hormonal problems. There are only approximately 800 pediatric endocrinologists in the country, and less than 10 in Oregon. It's a very specialized practice--the kind that adheres to strict policies and can be significantly affected by as few as one or two published research articles. Rosenfeld is also the head of the department of pediatrics at OHSU.
"I think the Intersex Movement has certainly had an influence on my practice," he explains. "There are definitely occasions when I recommend surgery, but if someone asks me my opinion, I tell them, 'This is what I would do, but there's also this movement that recommends this,' and then I direct them to ISNA's website."
Mostly, Rosenfeld still lets the decision rest on the parents. "Some parents just want their child to be normal, and they don't want to tell them anything. I've never recommended that, but it's up to them." Likewise, Rosenfeld does not try to force parents into supplying their child with any kind of counseling as they grow up, even though he admits that no matter how many surgeries one has, it's likely they will always have to deal with hormonal and chromosomal imbalances. Because of this imbalance, "there is a higher likelihood of psychological problems in intersex individuals," he says.
But the mere fact that Rosenfeld is aware of ISNA is a major step for the movement; his respect for what they've done is a remarkable achievement.
"We understand this is hard for doctors," said Emi. "You can't look back on your career and say, 'It's all been a mistake,'" especially considering the nature of their practice.
Dr. Rosenfeld echoes Emi. "We had Cheryl [Chase] speak at one of our meetings," he explained. "And she gave an excellent speech. It wasn't dogmatic, wasn't preachy. She didn't tell us, 'Everything you've done is wrong,' she said, 'Maybe 9 out of 10 were right. Maybe you should consider this.'"
But to hear Emi talk about doctors, you wouldn't think she was treated by someone as thoughtful as Rosenfeld. "I'm very skeptical of doctors," she explained quietly. "I've never had a good experience with one. I just won't talk to them."
This summer, she's working as an intern at the first-ever organized center for intersexuals, where she and four other staff members are actually paid. Yet she only agreed to take the job on the condition that she didn't have to speak with any physicians.
However, a lot of the work going on at ISNA has everything to do with doctors. "We've been working with some doctors this summer," she explains. "But until we finish our work with them, there's no way we can tell you who they are or what exactly we're doing." The doctors that Emi is referring to are so concerned about the reaction of the medical community, that until their work is finalized with ISNA, their work must remain secret.
"If someone else in the medical community were to find out what we're doing, they might try to put a stop to it before we can publish our results," Emi explained. "We can't have that happen."
But what Emi can say, is that the individuals they're working with are helping write and advocate for changes to the medical treatment of intersexuals as a whole. Emi, Cheryl, and their four other co-workers have been at the ISNA center in California all summer long, in order to initiate this change. Hopefully, someday soon, they'll be ready to present it to the medical community with the support of at least some medical specialists.
I'm Not a Fetish
Put the word "hermaphrodite," into any search engine, and you'll get at least a dozen porn pages. A lot of them will be your average beaver and titty shots. But others are devoted to showing photographs of actual hermaphrodites--for the benefit of the hermaphrodite fetishist.
"That's a really scary thing, for me," says Zachary. "You're worried enough about people thinking you're different, and then you become this object to some people."
Encountering someone who's interested in using them as a sexual fetish is always a danger for intersex people who are out, and it doesn't help when some intersex people choose to show up on talk shows or pose for porn sites.
"Once I saw this show on Sally, and the topic was, 'I was born both male and female,'" says Emi. "I couldn't believe that an intersex person was willing to go on and talk about it in that context. I mean, for them, if they're comfortable, that's fine. But for us, well, it doesn't really help our cause."
The urge to objectify this difference in the public, and even within the intersex community, is strange, but in a way it's just an exaggeration of the attitude that the rest of the world has about hermaphrodites or any "gender deviance." But unlike other gender movements, embracing being intersex is often the last thing anyone wants to even think about.
"Coming out as a intersex is really, really hard," Emi explains. "For the queer community, there's a lot of incentive to come out, especially in the '80s, when there was the whole AIDS epidemic. You came out to save your friends' lives."
Plus, in the queer community, one's difference has a lot to do with whom they choose as a partner. For an intersex person, their condition doesn't necessarily have anything to do with sexual preference. Likewise, in the transsexual community, one needs the public validation just to feel recognized as a transsexual.
If you're intersex, what other people think about you really has no bearing on what your genitals look like. Moreover, one of the biggest enemies of the intersex community is shame. Even Zachary, who seems very well-adjusted and accepting of his situation, wasn't ready for the world to know of his intersex status in this article. "The problem is, people find out you're intersex, and that's all they see. I'm in the medical profession. I want people to know me for my position, not because I'm intersex."
While Zachary's parents and sisters know and understand, he still hasn't told his younger brother. "Someday I'll tell him," he says with certainty. "Just not now."
For this reason, says Emi, she and Cheryl have no official members, and no real count of the intersex people they service. Rosenfeld estimates one in 1000 children are born intersex, but the intersex society ISNA does claim, however, that there are five "harmful, medically unnecessary surgeries every day in the US."
Regardless of everything he's been through, Zachary has no doubt that his parents did the right thing by letting him decide what the best course of action would be. "Looking back as an adult, I realize, we all have our problems. They make us who we are. I can't say I would change things if I could. Who would I be then?"
Portlander Emi Koyama will speak August 23 at In Other Words Bookstore (3734 SE Hawthorne Blvd). The presentation will start at 7 pm, and is free and open to the public. For more information on ISNA, see www.isna.org.
