State Senator Scott Wiener (D-San Francisco) introduced a landmark bill on intersex autonomy on February 4th. Supported by a coalition of human rights and civil liberties groups including Equality California, interACT Advocates, Human Rights Watch, the Transgender Law Center, and the ACLU, Senate Bill 201 aims to prohibit medically unnecessary cosmetic surgery on infants’ genitals. The issue is far more complicated than it may appear at first glance.
SB 201 addresses surgery used to “normalize” infants’ genitals who were born as intersex. The Intersex Society of North America defines intersex as “a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.” This includes both outward physical characteristics of a person and their chromosomes. ISNA states that the term “intersex” refers to a broad spectrum of physical and genetic differences that are considered atypical by long-standing norms of a solely male-female gender binary. Before the advent of genital surgery, intersex people were simply assigned a gender based on the parents’ “best guess” and then were raised accordingly. Beginning in the mid-twentieth century, surgical procedures have been performed on countless individuals with ambiguous or atypical genitals since then.
Proponents of SB 201 argue that this type of surgery, known also as Intersex Genital Mutilation (IGM), is purely cosmetic and should be deferred until the child can fully form their identity and make a fully-informed decision before consenting to surgery that is irreversible. They also warn against harmful consequences of the surgery that they feel are ignored in favor of “normalization.”
Opponents say that early intervention prevents psychosocial issues that may stem from having atypical genitalia and that the bill infringes on doctors’ ability to treat patients and parents’ right to make medical decisions regarding their children before the child is able to decide themselves.
Senator Wiener said in an interview that he became aware of “talk of legislation” on intersex issues before he entered the legislature. In 2017, after his first year as a senator, he was approached by activists wanting to draft legislation. He looked more deeply into the issue and “became convinced that legislation was, in fact, needed.” With help from activists and numerous human rights organizations, Senator Wiener filed Senate Concurrent Resolution no. 110 (SRC-110) on September 11, 2018.
Acting as an impetus for SB 201, SRC-110 was intended to help the legislature understand and digest issues relating to intersex people. “We went back and forth and decided ‘let’s do a resolution’ because this is an issue where there’s not a lot of public awareness,” Senator Wiener reasoned. He also added that introducing legislation on medical issues is controversial, so a resolution would be a more palatable first step. There were four hearings in which senators and assembly members heard testimony of witnesses from both camps, and SRC-110 was read and adopted on August 23, 2018.
One witness was Hans Lindahl, an intersex cartoonist and advocate, and the Communications Director of interACT Advocates for Intersex Youth. Lindahl spoke with the Beacon about their role in helping along SRC-110 and the importance of SB 201.
Lindahl became involved with interACT originally through the youth advocacy collective and has “been with it ever since.” They actively supported SRC-110, participating in lobbying by handing out materials to legislative aides in the capitol, coordinating volunteers and telling anybody who would listen about intersex people and their fight against non-consensual surgery.
In discussing visibility of the intersex community, Lindahl noted that visibility is a double-sided coin: “Visibility is awesome and it is important and it is one step. Visibility is not necessarily a good thing…because you can be visible but still not treated well.” They note that intersex advocacy is relatively young and did not take root until the 90s. In that short time, the movement is taking great strides.
For example, interACT’s growth as an organization points to changing tides. Lindahl says that interAct’s youth program has gone from a handful of anonymous contributors 6 years ago to now: “60 youth members, many of whom are public, and writing articles, and starting organizations in their home countries...If a few people come out and start doing work, it makes it okay for more and more people to do that.”
This visibility is important because the intersex community has been largely misunderstood by the public. The point of ending surgery on intersex people has as much to do with avoiding possibly damaging surgery to infants as it does with validating intersex people as a gender minority that is “normal” and which does not need to change to fit society’s definition of gender. Deferring surgery also allows intersex people to discover who they are and make informed decisions before consenting to surgery, if they want to undergo it at all.
Lindahl explains that genital surgery on infants can have unexpected consequences later in life. “In the scenario that would take away tissue, the child grows up and identifies as female, then maybe there will be some people who [are fine with the fact that the surgery was done]. But there are proven risks of reduced sexual function,” Lindahl said. “It is a very sensitive area. There can be [painful] scar tissue, and increased risk of UTIs.”
Lindahl noted that some doctors in favor of early surgery will say that the opposite is true, that UTI risk increases if the surgery is not done early—which, Lindahl says, is simply not true. Additionally, what if the gender assigned to the individual is not one they identify with?
The psychological effects of the surgery are just as harmful. Lindahl argues that the root of the surgical practice on intersex people is trans- and homophobia. “It both is and is not about gender,” they said. “Of course your sex traits inform your experience with gender. That is true whether you are intersex or not. When you are assigning an intersex person’s most intimate body parts, what you are doing is you are sending a message that says, ‘something was urgent and we had to fix you. It was too shameful, or too urgent, to have you be left alone as you were.”
Children who do have surgery and do not identify with the genitalia and gender assigned to them then end up having an experience similar to that of a transgender child. That can be profoundly damaging. In a 2016 study done by the National LGBT Health Alliance Australia, “people with an Intersex variation aged 16 and over are nearly six times more likely” to attempt suicide. Of that group, “19% of people with an Intersex variation aged 16 and over had attempted suicide on the basis of issues related their Intersex status.”
Doctors, Parents, and Irreversible Decisions
Senator Wiener mentioned that some medical professionals are not in favor of SB 201. “The urologists are opposed: they fought us hard last year, we [think] they will do so again,” said Wiener. The California Medical Association has not taken a stance yet, but Wiener said he “wouldn’t be surprised if they opposed the bill.”
Dr. Peter Bretan M.D., a practicing urologist in Santa Cruz, president of the California Urological Association and president-elect of the California Medical Association, recently took to the radio program “Air Talk” on 89.3 KPCC to discuss SB 201 and his medical reasons for opposition.
Dr. Bretan focuses on surgery performed on individuals who have Congenital Adrenal Dysplasia (CAH), a condition the National Organization of Rare Disorders defines as “a group of rare inherited autosomal recessive disorders characterized by a deficiency of one of the enzymes needed to make specific hormones.”
Dr. Bretan is not necessarily against deferring surgery for intersex children. He conceded: “I think if you can delay surgery up to adolescence, then you can delay it after 18 and they can make their own decision.” However, he added that most people with CAH that are genetically female, meaning they have XX chromosomes, and they identify themselves as female, though they may have physical characteristics that are seen as typically male at birth. Most commonly, that is expressed as a clitoris that is larger and resembles a penis.
In defense of early surgery for CAH patients, he said the decisions are made by teams of “multidisciplinary” medical professionals, the surgery is safe, and that “there is far more psychological impairment if you don’t let genetic females be raised to their fullest potential and be identified as they identify themselves.”
Dr. Arlene Baratz disputed with Dr. Bretan’s assertion that chromosomes infallibly determine sex or gender. Baratz, a physician specializing in breast radiology, is the mother of two intersex daughters and has a long history of intersex advocacy.
She believes that CAH is used as a primary argument for early surgery, but that the science doesn’t support the stance. Baratz’s daughters have Complete Androgen Insensitivity Syndrome (AIS). People with AIS are resistant to male hormones (androgens) that occur naturally in their bodies resulting in a person that has XY chromosomes but develops typically female characteristics.
Dr. Baratz roundly rejects the claim that chromosomes determine gender identity:
People like my daughters who have [AIS], they were born with XY chromosomes and testes and those testes made male hormones called androgens, but their bodies are completely immune or insensitive to androgens so they developed as female, they identify as female. Clearly the presence of XY chromosomes or testes does not predict [a person’s gender identity].
In CAH side effect of the inability to make certain hormones is that their bodies make more androgens (hormones that make more typical male changes) so their bodies on the outside can look more typically male though internally they may have the uterus and ovaries and have two X chromosomes. In that case, just like in the case of my daughters, the chromosomes do not predict gender identity.
1 in 8 children who have CAH do not identify as females, and Dr. Baratz said that it is not a negligible figure. She believes it is “disingenuous” to tell people with children affected by CAH that it will be “rare” that they don’t identify as female.
Contrary to Dr. Bretan’s picture of a team making decisions on the behalf of the welfare of patient and family, Dr. Baratz says that doctors play a major role in the decisions that parents make in regard to their intersex child’s medical care. “Clinicians are very influential,” she said. “Even if there is a whole team [that supports delaying surgery] one person can walk in and say ‘well if we don’t do it now, then we will miss the window for it to work.’ That really sways parents.”
To prevent parents from being pushed to choose surgery at the onset, she advocates for the kind of affirming care that transgender children who postpone surgery get, with better education and stronger support from all angles. She emphasizes speaking with doctors, psychologists, other intersex individuals, anyone who can offer support and help them become more informed about having an intersex child. But that is easier said than done.
“In reality, it’s not happening,” she said. “There’s not a lot of access to that kind of support. So parents don’t get that kind of support, they end up making decisions about early surgery when they are frightened, and psychologically vulnerable.”
Dr. Baratz confirms that these irreversible decisions can harm a child in physical and comparable psychological ways.
Also in opposition to SB 201 is a nonprofit organization called CARES Foundation, which provides programs and services aimed at supporting individuals with CAH and their families through “support, advocacy, education and research.”
In a statement on the bill, CARES Foundation Executive Director Dina Matos called for protection for parental choice in making medical decisions for their children, citing worries about limitations on doctors to provide individualized care, and physical and emotional scarring as the main reasons for opposing SB 201.
“The best treatment options are unique to each patient, each having different needs and circumstances that cannot be limited by legislation without posing significant risks to children’s health,” Matos wrote. “Parents rely on doctors to provide their young patients and families with the treatment recommendations and individualized medical plans that are solely in their best interest...The current debate in California is an attempt to strip away the rights of parents to make medical decisions that are best for their children.
Senator Wiener was not having any of it.
“Nothing in this legislation in any way endangers the health of children born with intersex characteristics,” Wiener said. “Quite the contrary, SB 201 protects children’s health by not subjecting them to medically unnecessary and potentially harmful baby genital surgery.” He pointed out that the bill clearly refers to cosmetic surgeries that are to be delayed if they are not medically necessary.
Addressing parents rights, Wiener said, “Parents absolutely have a role to play in providing care and guidance, but for decisions as important as gender and bodily autonomy, the individuals impacted should be able to decide for themselves before undergoing life-changing, often irreversible, surgeries.”
He also warned against the argument for “parents’ rights,” recalling the “disturbing history” of “harmful conversion therapy.”
“We put an end to that practice by banning it. Similarly, it’s time to put an end to medically unnecessary, cosmetic genital surgery on intersex babies.”
The comparison drawn between conversion therapy and CARES’ emphasis on parental rights may be appropriate. Several key members of CARES have faced criticism for their views on the LGBTQIA+ community and controversial practices.
Matos is the ex-wife of former New Jersey governor Jim McGreevey, who famously came out in 2004 during his resignation speech after accusations of sexual harassment from his former aide Golan Cipel. In 2010, NBC Philadelphia reported a speech in which Ms. Matos stated publicly that she believed that marriage was between a man and a woman. Further, she told reporters that “she is glad the N.J. legislature did not pass [2010’s] gay marriage bill.”
Dr. Dix Poppas, a medical advisor to CARES Foundation and Chief of Pediatric Urology at the Children’s Hospital of New York, came under fire in 2010 when he was criticized for using “vibratory devices” to test clitoral sensation in young girls who underwent clitoroplasties in a study published in 2007. Weill Cornell Medical College defended him, stating that the experiments were “standard clinical procedure.”
In an article for Rewire.News, he insisted the tests were noninvasive and that he “should have videotaped it so someone could see what we’re doing...The degree of vibration is extremely minor. And again, that was for me to prove to myself that I wasn’t hurting these children."
Dr. Maria New, also a medical advisor to CARES, has caught some flak for giving dexamethasone (dex), an experimental drug, to pregnant women (who are not approved for its use) to prevent CAH in their children, as well as an attempt to prevent them from being lesbian.
This all comes as no surprise to Lindahl. They replied: “On the parents’ rights angle, CARES think it is the parents’ decision they want to preserve [and] the parents’ right to choose surgery, but the thing about CARES is that, frankly, their leadership has always been homophobic.”
Lindahl sees many parallels with the struggles of the other letters in the LGBTQIA+ community. “The reason intersex people face the societal issues that we do is because of homophobia, is because of transphobia,” they said. “Unlike the other letters, our differences are measurable on our bodies and that allows people in power to erase them like I am sure they wish they could do with other letters. We have seen things like transgender brain studies and the search for a gay gene, but with intersex people, it is right there.”
Where do we go from here?
SB 201 needs to go through 3 committees before it is put to a vote, which will happen sometime in April, according to Wiener’s Communications Director Victor Ruiz-Cornejo. Hans Lindahl reports that they have a tentative date of April 1st for the first hearing. Wiener said he is dedicated to seeing it all the way through—even if it doesn’t pass this time around.
“When I take on an issue, I like staying with the issue. Whatever happens with the legislation...we are not going to give up on the issue,” he said. “And I am more than happy to partner with the advocates to try and move society in a positive direction.”
Hans Lindahl has the same determination to see SB 201 through as someone directly affected by these issues: “They are always looking for a reason to make that decision...but it has...been something that the community has been asking for for decades, which is ‘just let us decide already.’”
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