Today, Senator Scott Wiener (D-San Francisco) and a coalition of civil rights, intersex, healthcare and LGBT advocates announced legislation to ensure intersex babies – “intersex” being a term used for people born with variations in their sex characteristics, including genitalia – can provide informed consent before undergoing medically unnecessary surgeries that can effectively assign them a gender (before they can decide for themselves) and that can irreversibly harm them. Senate Bill 201 would not prohibit treatment or surgery when it is medically necessary; it simply prohibits cosmetic surgeries on babies that are medically unnecessary and based on a desire to “normalize” a child’s genitals. Some of these surgeries include, reducing a clitoris, creating a vagina or removing healthy gonadal tissue.
This long overdue measure delays medically unnecessary, often irreversible and potentially harmful procedures until children have the ability to make informed decisions for themselves. SB 201, at its core, is about giving people born with variations in their sex characteristics autonomy over their own bodies and lives. Performing highly invasive genital surgeries on babies is risky, while waiting costs nothing and allows people to make their own decisions. Delay gives individuals and their families the most options, including access to future medical advances once the patient can understand the risks as well as allowing an individual to express their own gender and not have that decision made for them.
Approximately 1-2% of people are born with variations in their sex characteristics, referred to as intersex traits. A subset of these variations are recognized at birth, while others may go unnoticed until later in life or may never be recognized. Although a very small percentage of intersex infants may require immediate medical attention—for example some are born without the ability to pass urine—the vast majority are born perfectly healthy and able to live rich, fulfilling lives without any modification to their genitals. In other words, they have no medical problems – they simply have atypical genitalia.
SB 201 answers the questions: If someone is born perfectly healthy but with atypical genitalia, who should decide the person’s gender and who should decide whether the person should undergo highly invasive surgery with potentially significant and permanent side effects? SB 201’s answer is that the individual should decide, not a physician or parent.
Human Rights Watch, the World Health Organization and every other human rights organization to consider the issue has condemned the continued performance of these procedures. Dozens of United Nations entities have repeatedly condemned the practice of intersex infant genital surgery. Not unlike the victims of LGBT conversion therapy, intersex individuals living with the results of nonconsensual genital interventions often deal with the harmful emotional and physical consequences of medically unnecessary attempts at “treatment” for the rest of their lives.
“Everyone deserves autonomy about who they are and what medically unnecessary surgeries they undergo,” said Senator Wiener. “This legislation allows individuals to choose for themselves if and when they undergo life-altering medical procedures. Parents and doctors have a critically important role to play in the health and well-being of their children, but we should not deprive individuals of the right to choose whether to undergo invasive surgeries that are cosmetic, medically unnecessary and associated with long-term permanent health consequences. It’s particularly important to allow individuals to make their own healthcare decisions when a medical procedure makes potentially irreversible decisions about a person’s gender assignment – a decision that each person should be able to make on their own. I look forward to working with our broad coalition of intersex advocates, medical professionals, LGBT advocacy organizations, parents, civil rights organizations and affected individuals to pass this important human rights legislation.”
Beginning in the mid-twentieth century, physicians began modifying the genitals of infants they considered atypical, even if the surgeries were purely cosmetic and not medically necessary. These treatments and interventions include infant vaginoplasties, clitoral reductions,and removal of gonadal tissues, and may result in extreme scarring, chronic pain, incontinence, loss of sexual sensation, post-traumatic stress disorder and incorrect gender assignment. While a number of doctors continue to perform these often irreversible procedures in infancy based on the theory that they will help intersex people feel more “normal,” no research definitively proves that claim and all major groups led by affected adults condemn the practice when performed without the consent of the individual involved.
“SB 201 preserves options for families of children born with natural variations in sex characteristics and genitalia. Drastic cosmetic procedures, like reducing a clitoris or creating a vagina for an infant, have not been proven beneficial, compared to delaying for the individual’s informed consent—acting has high stakes, while waiting costs nothing,” said Kimberly Zieselman, Executive Director of interACT: Advocates for Intersex Youth, an intersex woman herself affected by the surgeries. “Attempting to erase these natural differences perpetuates a message of shame, stigma and homophobia. Medicine evolves alongside social acceptance, and this bill sends a clear message: there’s no rush to perform these surgeries on infants. interACT is proud to be a part of this historic human rights effort. ”
“When my daughter was born in 2012 with an intersex condition known as Congenital Adrenal Hyperplasia, we faced intense pressure to consent to cosmetic surgeries to reduce the size of her clitoris and create a vagina for heterosexual intercourse. I was surprised and angered by the fact that some did not agree that delaying cosmetic surgery until our daughter could decide for herself was the only ethical choice,” said Eric Lohman, a parent, author and PhD in Gender Studies.
“For too long, our society has denied intersex children and their families the ethical, compassionate health care they deserve,” said Equality California Executive Director Rick Zbur. “This is a critical human rights issue – and it’s one on which California should be leading the way. We’re grateful to Senator Wiener for his leadership and look forward to once again sending a strong message of support to intersex Californians.
“Instead of forcing conformity, we should celebrate our differences,” said Elizabeth Gill, Senior Staff Attorney with the ACLU of Northern California. “We must allow intersex individuals to embrace their identities and bodies, and to articulate who they are before doctors perform risky, irreversible and medically unnecessary surgeries.”
SB 201 builds on Senator Wiener’s Senate Concurrent Resolution 110, passed in 2018, which called on the medical community to delay performing medically unnecessary sex-assignment and genital “normalization” procedures until an individual can provide informed consent. The resolution was the first of its kind in the nation, and if passed SB 201 would make California the first state to mandate intersex patient participation in decision-making before procedures such a clitoral reductions are performed.
SB 201 is co-sponsored by interACT, Equality California, the American Civil Liberties Union of California, and is also supported by Human Rights Watch. It is co-authored by Senator Jim Beall (D-San Jose) and Assemblymembers David Chiu (D-San Francisco), Todd Gloria (D-San Diego), Kevin McCarty (D-Sacramento), Phil Ting (D-San Francisco) and Bill Quirk (D-Hayward).
The bill was officially introduced on January 28, and will be set for a committee hearing in the coming months.
Full bill text can be found here.