Ref. :  000041687
Date :  2018-06-12
Language :  English
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Intersex kids are subjected to dangerous surgeries. California is poised to stop it.

"It was about my doctor and my parents and everyone feeling uncomfortable with how my body was ... But I want to be like nature made me.”

An intersex flag

Betsy Driver was born with congenital adrenal hyperplasia, one of the most common causes of intersex traits; intersex is an umbrella term to describe someone with internal or external sex characteristics that can’t be classified as typically male or female. So at three months old, Driver underwent a total clitorectomy.

The surgery wasn’t medically necessary; doctors suggested that she undergo the surgery so she wouldn’t grow up with gender identity problems, become a lesbian, or commit suicide. More surgeries followed in her teens; one left her incontinent; she contracted a venereal disease in another.

“All of the surgeries and attention taught her that her body was unacceptable and
something of which to be ashamed,” concluded a 2005 investigation by the San Francisco Human Rights Commission into the medical “normalization” of intersex people.

After investigating Driver’s experience — which the commission called genital mutilation — and investigating many others like hers, officials recommended that these surgeries be delayed until an intersex person can give meaningful consent. Now, more than 10 years later, a resolution is making its way through the California legislature, recommending this as well.

California is poised to become the first state to effectively condemn a decades-long practice in which children whose sex characteristics don’t neatly align with norms undergo surgery without their knowledge or informed consent. The resolution is also telling the intersex community, or roughly 1.7 percent of the total population (about the same number of people born with red hair), that California stands with them.

The resolution, SCR-110, is non-binding and doesn’t ban all surgical procedures. But advocates also don’t aspire to do this. If someone’s born with, for example, no urinary meatus, or opening, then their condition is clearly life-threatening and so advocates support surgery. Moreover, the resolution’s supporters hope for health professionals to delay medically unnecessary, non-urgent surgeries until the intersex individual can participate in the decision.

“The first goal is to get a resolution passed that will actually show that the state of California is making a strong statement in support of intersex rights and intersex people … that’s a big achievement,” said Kimberly Zieselman, executive director of interACT, the largest intersex advocacy group. The organization lobbied for the resolution. “We’ve never had a state or legislative body in the U.S. come to consensus on that and say that.”

Experts say doctors may recommend about one in every 2,000 newborns get surgery because they are intersex. Since the 1960s, the medical paradigm has been that doctors and parents make their best guess in assigning a child’s sex if they’re born with intersex traits. But in the 1990s, advocates began speaking out against this practice. There is no sufficient research that shows the benefits of such surgery or that suggests growing up with atypical genitalia is harmful. In fact, there’s growing evidence to suggest that coercive, non-consensual surgeries produce physical and psychological damage.

The Human Rights Watch (HRW) recently interviewed dozens of intersex adults who are reeling from this medical practice. One woman, under the pseudonym Ruth, told HRW that she developed post traumatic stress disorder and dissociative states after “[doctors] treated [her] like a lab rat, semi-annually.” She also didn’t know she was intersex until she was 32 years old. When Ruth confronted her childhood endocrinologist about why she wasn’t informed, he said her mother asked him to keep it a secret.

“That was when I realized that this way I was treated was never about me — it was about my doctor and my parents and everyone feeling uncomfortable with how my body was … But I want to be like nature made me.”

Another intersex woman who was 55 years old told HRW she didn’t provide informed consent to any of the six operations she underwent as a child but was forced to live with the consequences anyway.

“There was one operation when I was 16. The doctor told me the reason they were going to do it was so that I could become sexually active and also so that the opening of the urethra and vagina was more distinctive,” she said. “So the surgery was done so that some guy could enjoy himself. And really, I never ended up — with all the surgeries — ever having sexual gratification because basically all nerves were cut away.”

Most of the practitioners HRW interviewed said these medically unnecessary surgeries are becoming less common, but no one said their clinic has stopped altogether. No nationwide data exits on how prevalent these surgeries are.

“In cases where these surgeries may be also surgically assigning a gender or assigning a sex on assumed gender — that’s obviously even more crucial, there’s even more need for a wait-and-see approach because a baby or a young child cannot tell you what their gender identity is nor can they tell you what they want their body to look like,” Zieselman told ThinkProgress.

“Our hope is that it will then help push others in the medical community and society in general to really think a little bit harder about what’s happening to intersex kids,” she continued.

Currently, it’s customary for parental distress to legitimize the surgery, but the hope is for the medical community to recommend psychosocial support instead.

“Don’t rush medically unnecessary surgery,” is all that lawmakers are asking for said state Sen. Scott Wiener (D), who introduced the resolution. “Why we started with resolution is to put the issue out there, air the issue, and get feedback,” Wiener told ThinkProgress. He said California lawmakers may pursue legislation in the future.

While intersex and transgender people are very different — often, intersex advocates fight for surgeries they don’t need and trans advocates fight for surgeries they do need — the national dialogue on identity has made this resolution politically feasible right now.

“Society’s understanding of gender and the gender spectrum and the reality that kids express their own gender — that understanding has grown significantly in last five, ten years,” said Wiener. That’s why he’s cautiously optimistic it’ll pass in the assembly this summer; it already passed in the senate last month.

Pressure is mounting nationally to end medically unnecessary “normalizing” surgeries on intersex youth, and many medical stakeholders, including the American Medical Association and the American Academy of Pediatrics, are currently considering policy. While such surgeries have been condemned by the United Nations, World Health Organization and three former U.S. surgeons-general, obstacles remain. Members of the intersex community were shut out of the American Urological Association’s annual conference last month. Urology professionals were deeply critical of the recent HRW report, saying patients were treated before physicians began to specialize in pediatric urology and it’s no longer common.

“Our medical community needs to help families to take a more measured approach to surgery,” Wiener said, after the resolution’s introduction in March. “California has long been a leader for all people, and we can lead the way in supporting intersex children and their families.”

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