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by: Dynasti deGouville

In March 2021, Senate Bill 225 (SB 225) was introduced by Senator Scott Weiner (D-San Francisco) as an addition to the Business and Professions Code relating to medical procedures. SB 225: The Bodily Autonomy, Dignity and Choice Act details its purpose as follows: 

“This bill would prohibit a physician and surgeon from performing certain sex organ modification procedures on an individual born with variations in their physical sex characteristics who is under 12 years of age unless the procedure is a surgery required to address an immediate risk of physical harm, as specified. The bill would make any violation of these provisions subject to disciplinary action by the board, but not criminal prosecution.”

This legislation provides families and intersex patients alike the power to make informed decisions regarding how and when to make surgical or hormonal modifications to variant genitalia granted they decide to make them at all. It also allows parents and primary physicians the time to learn about the child and make the best decision for them as they continue to grow. While this bill is a landmark success for the intersex community, it comes after almost a century of medical mismanagement of gender binary non-conforming genitals. Suzanne J. Kessler in Lessons from the Intersexed greatly details the horrors and abuse of intersex patients throughout the 20th century. She juxtaposes both the physician and patient perspective on intersex care and demonstrates that people with intersex conditions have always been angry at their treatment, feeling seemingly at war with their medical providers. 

Mari, Bria, and Hans stand at the Sacramento capitol holding the intersex flag. (Eler de Grey)

According to InterACT: Advocates for Intersex Youth, “intersex” is an umbrella term for differences in sex traits or reproductive anatomy. Dr. Anne Fausto-Sterling, who has reviewed medical literature from 1955-1998, says about 1.7% of infants are born intersex.[1] To put 1.7% of infants into perspective, there is approximately a 0.4% chance of having identical twins, demonstrating the large proportion of people who are born intersex. Intersex people may be born with these differences and they may be immediately noticeable, or they may develop during early childhood and may not become noticeable until puberty. Most intersex traits are random and include chromosomal translocation or deletion of the SRY gene (testis-determining factor)[2], variations in the AR gene, which is an enzyme deficiency leading to increased hormone production[3], and exogenous hormone use during pregnancy.[4] 

Historically, on the occasion that physicians are faced with variant genitalia, they adopt one approach: correction. The medical point of view is that large clitorises, small penises, and otherwise disparate genitalia are wrong and need to be “corrected.”[5] This correction may entail several invasive and painful surgeries such as a vaginoplasty, labiaplasty, clitoroplasty, vaginal dilation, phalloplasty, and more. These procedures have been encouraged by healthcare professionals for infants under the age of 18 months, suggesting that this is before a child begins to form their gender identity and it becomes necessary to properly integrate them into society as either a man or a woman. 

Typically, medical professionals referred to non-categorizable genitalia as “ambiguous,” but intersex patients prefer the term “variant” to underscore the wide array of appearances that naturally occurring genitals may take. This reflects what intersex patients view as the compulsory normalizing of genitals for proper adult functioning and the intersex community’s push towards challenging preconceived notions of what should be considered natural. An intersexed form of resistance is the practice of referring to their corrective genital surgery as a “sex change,” or even “genital mutilation.” Once they are old enough to understand their genital expression and the implications, intersexed patients are often met with feelings of anger and betrayal towards their physicians and parents: “I have managed to calm down my murderous rage at [the] professional,” one person noted, “but i’ll probably never get over what my parents did to me by trying to kill me off.”[5] 

Intersex Justice Project co-founder Saifa Wall leads the crowd in a chant outside of the Societies for Pediatric Urologists conference in Chicago. | Michelle Zacarias / PW

Additionally, shame and stigma are forced onto the bodies of intersex people and play a large role in coercion into “corrective” surgeries for both patients and their families. Stigma is defined as a mark of disgrace associated with some identity, quality, or circumstance which has a detrimental effect on the stigmatized person either socially, mentally, emotionally, or even economically. Shame occurs when the stigmatized person internalizes the stigma. One intersexed adult woman describes her experience as “absolutely dishonest, embarrassing.”[5] Intersex people often cite feelings of shame surrounding their identity, but they actively combat these instances by forming support groups or advocacy organizations. One organization in particular, the Intersex Society of North America (ISNA), was founded in 1993 in an effort to advocate for the families and intersex patients who feel as if they have been victims of the brutality and biases of the healthcare system. They also serve as a reservoir for information and have worked to educate both those afflicted and those who provide care on intersex identities, offering improvements for healthcare and handling of disorders of sex development (DSDs). 

Today, the intersex community and other grassroots organizations have witnessed immense strides in recognition by the LGBTQ+ community and legislative changes that both protect and reaffirm their gender identities. As a result of ISNA’s lobbying, there is now widespread recognition of intersex identities within the realm of healthcare as several physicians acknowledge that now is the time to reform approaches to intersex patients. For example, the National Institutes of Health’s 2006 Strategic Plan for Urology describes the clinical management and treatment of DSDs as being in a state of emergency due to multiple issues with the traditional standard of care. Also in 2006, Pediatrics published a novel standard of care which incorporates many of the concepts long proposed by the ISNA. Additionally, there have been immense strides taken in implementing patient-centered care, cautious approaches to surgery, and the cessation of misleading or outdated language such as “hermaphroditism” in clinical settings.  

These changes have made intersexed lives much more bearable. One intersex man reaffirms his identity in a manifesto for a support group called Finding Our Own Way: “I am a complete person… If my genital anatomy is other than male or female, this is not a defect or a deformity; I am as I am meant to be.”[5] The ISNA recognizes that there are still advancements that need to be made, but progress is still underway and the lives of intersex patients continues to improve with increased support, advocacy, and education. 

References 

[1] Fausto-Sterling, A. (2000). Sexing the Body: Gender Politics and the Construction of Sexuality. Basic Books. 

[2] Cox, T. (2013). Sex-determining Region Y in Mammals. Embryo Project Encyclopedia. ISSN: 1940-5030 http://embryo.asu.edu/handle/10776/6887.  

[3] Gottlieb, B., Trifiro, M. (1999). Androgen Insensitivity Syndrome. GeneReviews. University of Washington, Seattle. https://pubmed.ncbi.nlm.nih.gov/20301602/

[4]Herbst, A. L. (1973). Exogenous Hormones in Pregnancy. Clin Obstet Gynecol, 16(4), 37-50. doi: 10.1097/00003081-197312000-00003.

[5] Kessler, S. J. (1998). Lessons from the Intersexed. Rutger University Press.