Even as a little girl, Betsy Driver knew her body was different.
It was only after she turned 35 and began poring over yellowed copies of her medical records that she uncovered the truth. When she was born, her anatomy did not fit the standard definitions of male or female, so doctors operated on her genitals to make her look more like a typical girl.
"One of the most basic things you're accustomed to hearing after having a baby is `Congratulations, you had a boy' or `Congratulations, you had a girl,' not `Congratulations, we'll have to get back to you,' which is what my mother heard," Driver said.
Hundreds of infants undergo genital surgery each year, but such procedures have grown increasingly controversial. Activists such as Driver are highly critical, saying children with ambiguous genitalia should forgo medical intervention until they are old enough to decide for themselves whether surgery is right for them. She helped form a group called Bodies Like Ours, which plans to stage its first protest at Connecticut Children's Medical Center in Hartford today to draw attention to its cause.
Some doctors agree. Dr. Philip Gruppuso, a pediatric endocrinologist at Brown University and Rhode Island Hospital, said genital surgery often isn't successful and sometimes leaves patients sexually dysfunctional.
"I just keep coming back to `First, do no harm,'" Gruppuso said, citing the physician's creed. "I'm far from convinced that the surgery does no harm. And it is permanent."
Other medical experts defend the practice of operating on intersex infants. In their view, allowing a child to grow up with ambiguous genitalia, and the schoolyard taunting and shaky self-esteem that often come with it, would be unethical.
"Intersex" is a broad term that encompasses a range of anomalies affecting the sex chromosomes, external genitalia or internal reproductive organs. Experts estimate that as many as 1 percent of all infants have some type of genital malformation, although the majority are relatively mild, such as
hypospadias, a misplaced urethral opening on the penis. The Intersex Society of North America, an advocacy and education group, estimates that one to two infants out of every 1,000 born have surgery to "normalize" their genital appearance.
In the not-so-distant past, surgery was the only option for parents of intersex infants. Dr. Paul H. Dworkin, physician-in-chief at Connecticut Children's Medical Center, credits activist groups such as Bodies Like Ours for changing that.
"There have been advances in understanding as a result of research and as a result of advocacy," Dworkin said. "I hope what we do at Connecticut Children's reflects best practice and would address many of the concerns that groups like Bodies Like Ours have raised."
The organization targeted the children's medical center after learning that a nationally known pediatric urologist was scheduled to deliver a lecture and perform surgery Friday. However, Dr. Richard Rink canceled his visit after hearing about the protest. He did not return a phone call seeking comment, but Dworkin said Rink was concerned about the patient's privacy.
Dworkin said he welcomes a dialogue with Driver and other activists. Connecticut Children's Medical Center performs genital surgery on young patients, although never with the intent of altering a child's gender.
"This, like so many things in medicine, is never black or white," Dworkin said. "It's never surgery or no surgery. It's always multifaceted. ... The key is enabling patients, or in the case of young children, families ... to assimilate all the information so they can make an informed decision. The answer for Child A is more than likely to be different for Child B."
For Bethany Hays Park, the answer was clear: Surgery for her intersex daughter was out of the question. The girl was born nine months ago with congenital adrenal hyperplasia, a genetic condition affecting girls that often results in an enlarged clitoris and other signs of "virilization."
"I was very much in denial that she had any type of medical disorder," said Hays Park, of Olympia, Wash. "I just didn't feel like there was anything wrong with her at all. ... I just feel like I would have to educate myself."
Driver said she wishes her mother had a similar view. But that was nearly four decades ago, and parents then were far more willing to bow to the medical establishment than they are today, she said.
"My mother feels lied to and misled," Driver said. "She feels parents need to know it's OK to have a baby like me."
A former assignment manager for an Atlanta television station, Driver, who lives in New Jersey, left her job two years ago to focus on her activism full time. Her aim, she said, is to end the shame, secrecy and isolation felt by people with intersex conditions. Bodies Like Ours, which has a mailing list of about 500, is contemplating similar protests elsewhere in the country.
"When we have diabetes, we don't hide it," Driver said. "But when we're intersex, we do. People are afraid; they believe all these myths, like we have two full sets of sex organs and we can have sex with ourselves."
She compares the nascent intersex movement to the gay rights cause 30 years ago. "We're not freaks," she said. "We're the people who live next door to you."
Copyright 2003, Hartford Courant
More about the goings on in Hartfort
from: http://www.bodieslikeours.org/hartford03.html
Hartford Action Wrap-up
--------------------------------------------------------------------------------
Despite the early hour and cold, damp weather, approximately two dozen social activists--IS and non IS--turned out to make a very public statement about intersex genital mutilation in front the Connecticut Children's Medical Center in Hartford on Friday, September 26, 2003.
The impetus behind this action was Bodies Like Ours being leaked an internal announcement from the hospital regarding the presentation, "Feminizing Genitoplasty and Total Urogenital Mobilization" at University of Connecticut Medical School Grand Rounds for CME credits on Thursday, September 25th. The presenter, Dr. Richard Rink of Indiana University School of Medicine, would then be conducting a "Total Urogenital Sinus Surgical Procedure" Friday morning which could be viewed "from a designated area within CCMC". The announcement was brought to our attention the Saturday before this mutilation was scheduled
Over the course of just a few days, we were able to mobilize our allies into joining us in protest against Rink's appearance. Our successes were many: the hospital went from ignoring us early in the week to inviting us in for a future date to share the adult survivor perspective. Dr. Rink cancelled his appearance due to the publicity surrounding our plans. Finally, we made the front page of the Hartford Courant that morning with a well-written article about intersexuality.
We also learned much. We learned how to quickly and effectively mobilize our local allies for their support, and we learned even grassroots protests take more money than our shoe string budget can afford. We've been approached by more than a few constituents who would like to see similar actions at their local hospitals, but unless we can raise the funds to help, we simply won't be able to. There's important work to be done but not all of it can be done cheaply or for free.
We understand how many worthy causes are in need of funding right now. As individual donors, we are also aware of how difficult it is to choose among the organizations that approach us. Intersex genital mutilation may not be at the top of your priority list, but we ask that it appear somewhere and that you donate whatever you can to help us end the shame, secrecy and isolation one out of every 2,000 people suffer from. We're asking because Bodies Like Ours has evolved as a leader in educating about intersex patient rights and intersex peer support but try as we might, we can't do it for free.
Our Connecticut allies invested their time and energy into making this event a success, and now we would like to ask you to make a financial investment in the important work of intersex advocacy and peer support. A donation now, whether large or small, can help support similar actions in the future when the need arises. Many of our supporters came through for us on an emergency basis last week (if you are one of them, thank-you and watch your mailbox soon for a small gratitude of our appreciation) but we still need more help. You can make an immediate donation securely online. Information about mailing or phoning in a tax-deductible donation may also be found on that page.
Our constituents want it to happen again, and with your financial support, Bodies Like Ours can make it happen for them. While our primary mission is peer support, we feel that opportunities like the one given us in Hartford is another part of our important work.
There were many other valuable lessons we learned on the fly in a few hectic and exhausting days. We learned that it takes only one brave, concerned person to start a freight train rolling. We also learned is that these Educational Demonstrations are a great way to reach healthcare providers and, equally importantly, the general public. We learned that only about half the people intending to show up with a sign actually do, but that the half that were there made an impression, educated strangers, and made a difference. We re-learned the importance of what one good reporter can accomplish by writing an article that gets it right without sensationalizing the obvious, and smart editors can make their morning readers choke on their coffee when our issue is put on their front page. Most importantly, we learned that open discussions with hospital administrators, even in an adversarial atmosphere, can lead to an invitation to present our case inside their building and we are expecting an invitation to speak at CCMC/UConn in the very near future.
The Hartford Courant news article, is above.
Thanks again to all of our supporters, both old and new, for getting behind us and this important action last Friday in Hartford. We are looking forward to the next educational demonstration, wherever and whenever it is needed.
We also have our hands full with upcoming speaking events around the country, but mostly on the east coast. There are simply too many list here but a couple of the highlights include Betsy Driver delivering the closing plenary at the Transcending Boundaries Conference next month at Umass Amherst and Bodies Like Ours Co-founder, Janet Green, will be a guest lecturer for Master's level counseling students in a Gender Issues in Counseling course at Rider University in NJ. Please visit our events page for a full listing that changes often.
Bodies Like Ours Board of Directors,
Janet Green
Dr. Nina Williams, PsyD
Deb Hartman
DaleLynn Sims
Betsy Driver
