Over the past several decades, the intersex community has been working to pass legislation that would protect intersex infants from early surgical interventions, and right now, a step toward acknowledgement is on the horizon with California’s SCR-110.
In February, interACT, Equality California and Sen. Scott Wiener introduced SCR-110 — a resolution to acknowledge and celebrate intersex people.
The term “intersex” identifies an individual who is born with any of several variations in sex characteristics (including chromosomes, gonads, sex hormones or genitals) that do not fit medically rigid definitions of “male” or “female.” Intersex variations are not uncommon and occur in about 1.7 percent of the population. One in 2000 children have visible differences at birth, putting them at risk for early cosmetic surgical intervention. Intersex children born with genitalia that a doctor considers outside of typical male/female appearance frequently receive medically unnecessary surgeries to “normalize” their genitals, such as surgeries that reduce an “abnormally” sized clitoris. The intersex community argues these surgeries violate a child’s basic and inherent right to bodily autonomy, and activists advocate for the deferral of any such surgeries until a child can make a consenting decision on their own.
Hans Lindahl is the communications director for interACT, a nonprofit advocating for the rights of children born with intersex traits. As the sole member of the organization based in California, she’s been a key figure in the fight to pass SCR-110.
“This is something that the intersex community has been pushing for for probably 25 years,” Lindahl said. “This [SCR-110] is the furthest that legislation has ever come.”
Sen. Wiener represents District 11 in the California State Senate, which includes all of San Francisco and parts of San Mateo County. Elected in November 2016, the 48-year-old Democratic representative has made LGBT+ issues a cornerstone of his time in office, exemplified by resolution SCR-110.
“Sen. Wiener has been just incredible,” Lindahl said. “He’s really been a champion for our community.”
During the 2017 legislative cycle, Wiener worked alongside intersex advocacy groups to pass SB 179: California’s Gender Recognition Act. This process helped expose previously unaddressed challenges facing the intersex community and bring them to the forefront.
In a statement, Wiener said SCR-110 further recognizes that intersex people are “not an aberration to be corrected, but rather an important part of California’s diversity worthy of celebration.”
The resolution passed the full Senate in May and the Assembly health committee in June, meaning it has only two hurdles left before full passage — one before the Assembly judiciary committee and one before the full Assembly. Both hearings are expected to take place in August.
The opposition to SCR-110 has been spearheaded primarily by a small subset of urologists and medical groups that continue to promote such operations because they benefit both monetarily and “from being the authority and maintaining the status quo,” according to Lindahl.
These urologists and medical professionals have maintained one issue in particular as the cornerstone of their opposition: congenital adrenal hypoplasia (CAH), an intersex variation that affects stress hormones and can trigger an adrenal crisis. Given this risk, it is one of the only intersex variations that necessitates any kind of medical intervention, usually in the form of steroids to replace low hormones. Intersex advocates have no issue with medically necessary intervention as it relates to managing imbalances of stress hormones caused by CAH. However, CAH can also affect sex hormones and testosterone levels in particular, which frequently results in larger than average clitorises and consequent surgeries.
To ensure they can continue “normalizing” clitorises in infants with CAH, medical professionals are arguing that CAH is not in fact an intersex variation; therefore, it is not the subject of the resolution after all. Also, opposition claims that 90 percent of the subjects of such surgeries are patients with CAH, meaning they are trying to exempt 90 percent of all possible individuals at risk and null this almost completely.
Laurence Baskin, Chief of Pediatric Urology at University of California San Francisco (UCSF), testified at the California State Assembly, saying: “these [infants with CAH] are children who have congenital abnormalities like a cleft palate…we’re restoring normal anatomy.” He further asserted about their gender identities: “90 percent of the time, it’s a girl.”
However, UCSF’s own website lists CAH as an intersex variation, and activists and proponents of SCR-110 like Lindahl ask, “but what about the other 10 percent?” Even if 90 percent of the time, “it’s a girl,” that means 10 percent of the time, an infant’s genitals are permanently surgically altered to fit a gender identity other than their own. Furthermore, Lindahl said these operations also impact the 90 percent of individuals who do grow up to identify as girls.
“Doctors are telling children that their most sensitive parts need to be fixed, setting them up for feelings of shame and stigma, regardless of their gender identity,” Lindahl said. “Doctors are telling them their bodies are shameful and that they need to obey to feel ‘normal.’”
Beyond medical professionals, the CARES Foundation — a nonprofit working to support families and individuals impacted by CAH — has also been a vocal opponent of the resolution.
“We believe that limiting early surgical access has the potential to create negative outcomes for those in our community, so we are opposed to all legislation that broadly bans surgical options, as surgical decisions should be made between healthcare providers and families, not legislators,” said Dina Matos, executive director of CARES. “We believe that CAH is a unique, life-threatening, endocrine condition and should be looked at as such, not under an umbrella of other, unrelated conditions that result in genital atypia.”
Kimberly Zieselman, executive director of interACT, said SCR-110 is not a ban on surgeries like CARES is asserting.
“SCR-110 is not a ban and will not prevent surgery,” Zieselman said. “It is simply acknowledging the intersex community and our right to bodily autonomy and if passed will indicate strong support by the California Legislature for protecting intersex kids.”
Jonathan Leggette, an intersex activist based in Washington State, wrote a testimony for one of the hearings in the hopes of “personifying” the resolution and “bringing it to reality and giving it an actual story.”
Part of his testimony reads: “At 6, doctors operated on me without explaining anything to me, just leaving me to wake up, bandages around my genital areas and a pain I will never forget. I had never had the chance to be told the truth, to be given the chance to decide for myself how my body feels to me. My body was owned by the surgeons before I had a chance to lay claim to it. Learning that I could have lived a life that allows me to make decisions for MY self around MY health and wellbeing is something I wish every future intersex child may have.”
For Leggette, his voice and story are his contributions to this fight.
“I don’t have the legal background, I’m not a lawyer, I’m not anything like that.” Leggette said. “But I’m someone who has experienced this and has a story and has my voice.”
Leggette said he hopes both his testimony and the resolution will help bring awareness to these surgeries that are “happening every single day all over the U.S.”
“This isn’t something that’s happening to people you don’t know. It’s happening to people in your community, and you’re not removed from it,” Leggette said. “You’re a part of it.”