Eden Atwood crosses her long legs, settles her skirt and relaxes into the red couch that makes her northside Missoula recording studio homey.
“Intersex,” she says, “covers a wide spectrum, and in my case, my condition was discovered when I didn’t go through puberty like my friends when I was 14.”
Every day there are children born with any one of a variety of conditions that fall under the intersex umbrella, a term used to describe conditions where genital or reproductive anatomy or chromosomal patterns don’t seem to fit the typical definitions of male or female, the Missoula jazz singer and voice coach explains.
Atwood speaks with authority, for she is one of those people.
“It sounds so far-fetched – I know,” she says, but it is estimated that one in 2,000 children are born with these conditions.
In her case, a blood test taken at age 14 revealed that although Atwood was born looking every inch a girl, she had XY – or typically male chromosomes.
“It is called Complete Androgen Insensitivity Syndrome,” she says, “and it means that I was born without a uterus, and instead of ovaries, I had testes embedded in my abdomen.”
In many cases, intersex children are born with obvious ambiguous sexual anatomy, and are routinely subjected to nonconsensual surgeries, hormone treatments and other medical interventions aimed at normalizing their bodies, according to Advocates for Informed Choice, a legal advocacy group based in California.
“When a child is born with ambiguous genitals, panic sets in for the parents who wonder, ‘What are we going to say? How are we going to fix this? How are we going to raise this kid?’ ” Atwood explains. “And then the surgeon is called in, and the scalpel is raised to solve a social problem.
“But because it is easier to feminize the genitals, almost all of these babies are made to look like girls, which causes a lot of problems for many of these children down the road when they are older and identify as a being male.”
These surgeries, almost never medically necessary and usually kept secret from the child, often lead to a lifetime of genital scarring, painful or absent sexual response, incontinence, depression, sterility and a sense of indelible shame.
In Atwood’s situation, her parents and physician didn’t share the true nature of her diagnosis with her, for fear it would be too traumatic and damaging to her psyche. Without her consent or full knowledge of the situation, a surgeon removed her testes.
Once the testosterone-producing organs were removed, Atwood was put on an estrogen replacement regimen. A year later, she learned the truth of her condition.
Ironically, Atwood views the surgery and secrecy meant to protect her from shame and isolation as deepening her shame and leaving her to feel utterly alone.
Having dealt with being lied to about her anatomy, and having spent much of her adult life connecting with others who live with intersex conditions, Atwood is now ready to help raise public awareness of this complex topic.
With her boyfriend Jim Ambrose, who was also born intersex, Atwood has launched the web-based Interface Project from her home in Missoula.
The project’s mission, Ambrose says, is simply “to gather and share personal stories of people living with an intersex condition or difference of sex development (DSD), and to spread the message “No Body Is Shameful.”
Ultimately, Atwood and Ambrose hope to help change societal and medical attitudes toward children who are born differently, to offer support to their parents, and have a child’s right to their own body be understood and respected.
“It’s about protecting their right to self determination,” Atwood says. “Parents and surgeons can’t be allowed to just cut into children because they don’t like the way they look – even if their intentions are good.
You have free articles remaining.
“When you feminize the genitals of these babies, then you have to pump them full of hormones, and you create that condition for life. And that surgery is a bell you can’t unring.”
In August, the project’s launch will get a star-powered boost from rocker Huey Lewis, a longtime friend of Atwood’s and a Bitterroot Valley landowner.
Lewis and Atwood, backed by a full band, will perform a high-energy blues concert in Missoula, with proceeds benefiting the Interface Project.
While back home in Montana during a short break in his tour schedule for the 30th anniversary of “Sports,” the album that made him famous, Lewis says he was eager to lend his support to the cause.
“I love Eden, and I’ve known her for a long time. She’s a great friend and a great member of the community, and intersex is clearly an issue whose time has come to shine some light on – it’s way past time.”
Lewis explains he didn’t know anything about the condition until Atwood talked to him about it. The concert, he says, will hopefully help to bring the issues around intersex into the mainstream and help bring an end to the tragedy and trauma of children who are forced into surgeries and operated on before they know what is going on or why.
Says Lewis: “I had no idea what an intersex kid was and I didn’t know until Eden talked to me about it. I think there are a lot of people who don’t know, and what Eden and the Interface Project are doing – it’s a wonderful thing. You need to weigh the kids’ opinion in all of this and find out what they want with their life.
“Don’t operate on kids until they know what is going on and can tell you what they want – that needs to get out.”
For Atwood, she hopes the project – and the upcoming Aug. 2 concert – inspire compassion, education and healing.
“When I was diagnosed, there was no Internet to turn to for information, there were no support groups I could find,” Atwood says. “This project is a way to connect people, to get support, to share stories and to summon bravery.
“Hopefully, it will be a place for parents to turn to that will give them the courage to slow down, be patient and allow their kid to tell them who they are.”
The concert will be a significant step in publicly illuminating the challenges and understanding of intersex people and their experiences, Ambrose believes.
“It’s going to be a big night, and to have a celebrity like Huey Lewis speak publicly about this is huge,” he says as a smile of gratitude stretches across his face. “Nobody has been brave enough, and he is an international celebrity.
“There will be a huge ripple effect out from this, and I think everyone who goes to this concert will be able to say, ‘I was there, it was at a pivotal moment in this civil rights movement.’ ”
For certain, the event is going to be memorable, Atwood assures.
“It’s going to be fun, the music is going to be amazing, the stories inspiring and the food will be incredible.
“It’s going to be a night of celebration like no other.”