In late August of this year, California’s legislature took an unprecedented step that will change the lives of intersex individuals throughout the state and could set the stage for even larger and more ambitious reforms.
To begin, what does it mean to be intersex?
Intersex people are those born with sex characteristics that do not align with traditional binary notions of male and female bodies. The term is used to describe an extensive range of physical variations, and the most thorough existing studies of the intersex population estimate that approximately between 0.05-1.7% of the world population is intersex. Based on the higher estimate, being intersex is equally as common as having red hair or green eyes. While international human rights standards have risen to protect the universality and equality of human dignity, the deeply-rooted false dichotomy of sex and gender gave birth to taboo and stigma against intersex people. Because their bodies are perceived as different, intersex people are often marginalized, discriminated against, and exposed to a variety of human rights violations.
This has led to a common yet disturbing practice: intersex children being subjected to unnecessary medical “normalizing” surgeries. These often irreversible procedures can have serious side effects, included but not limited to permanent infertility, chronic pain, incontinence, loss of sexual sensations, nerve damage, and lifelong hormonal therapy dependence.
Frequently performed on children far too young to be part of the discussion regarding their own bodies, these operations clearly violate many basic human rights, such as the right to physical integrity. Additionally, the tales of these “normalizing” surgeries were more often than not ones of shame, lies, and stigma. In many cases, doctors and parents have hid the diagnosis and treatment received by the children, fueling a vicious cycle of shame and secrecy as well as concealing important medical information from the victims.
In recent years, perspectives inside the medical community regarding the ethics and safety of such procedures have evolved immensely. A steadily growing number of physicians have acknowledged the inconsistencies and controversies behind research suggesting that the invasive surgeries benefit patients and/or that growing up with atypical genitalia can be physically or psychologically harmful. Many have openly recognized the need to distinguish between truly medically necessary practices and cosmetic ones.
Regardless of this progress, there are still few institutional protections for intersex children and their rights.
So, how does California come into play?
On August 28, 2018 California’s senate passed resolution SCR-110, the first to ever formally condemn unnecessary surgeries on intersex children. Said resolution was authored and introduced by Sen. Scott Weiner, with the strong support of social justice groups such as Equality California and interACT. Among other things, it “calls upon stakeholders to foster the well-being of children born with variations of sex characteristics…through the enactment of policies and procedures that ensure individualized, multidisciplinary care that respects the rights of the patient to participate in decisions.”
This is the very first time a U.S legislative body has recognized the intersex community and their rights to dignity and integrity. Finally, the abuses, marginalization, and dehumanization of intersex people have been denounced at an institutional level. This is not only a major step towards acknowledging and respecting the right to physical integrity and bodily autonomy but also one towards finally accepting intersex people as what they are: people.
Now, where do we go from here?
Even though California has taken the first leap towards ensuring equality, that still leaves us with 49 states left to follow. The intersex experience remains characterized by invisibility, secrecy, and shame. The full, prior, and informed consent of patients to potentially life-altering procedures is still not guaranteed for all, and standards towards the recognition of non-binary sex and gender are currently shaky at best. To this day, ensuring access to justice and accountability is exceedingly hard when it comes to the intersex community, which often struggles to receive adequate reparations for its suffering. In turn, this makes it much harder to guarantee further human rights compliance, feeding into systematic mistreatment and oppression.
However, regardless of how many obstacles remain to be faced, moments like these remind us that progress is still on the horizon.