Forced genital surgeries on intersex children remain a commonly overlooked health and human rights struggle. Skirting individual consent, invasive procedures such as clitoral reduction and vaginoplasty can still be offered to parents—if justified by the judgement of a specialist that a child’s anatomy looks “too atypical.” The surgeries, which impact fertility and sexual function, are usually performed when a child is under two years old.
This practice of the 1950s, born behind closed doors and based on a few deeply flawed theories, saw its first domestic challenges when the internet enabled adult patients and activists to connect in the 1990s—but not before spreading to other medical cultures worldwide. The issue remains the foundation of international intersex rights movements for bodily autonomy.
To-date, only two US hospitals have confirmed that they do not perform such surgeries on infants—and both statements were released in 2020.
Activist organizations, including interACT: Advocates for Intersex Youth, a leader in the United States, have made numerous calls to human rights bodies over the decades. interACT submitted a 2013 report to the United Nations Special Rapporteur on Torture, which then classified infant intersex surgeries as a form of torture. In 2017, interACT and Human Rights Watch released a groundbreaking report exposing the extent of the practice in the United States. Despite a significant number of intersex-affirming policy statements from organizations including the World Health Organization and Amnesty International, attempts to legislate meaningful change and enforce delays on infant surgeries in the United States have been met with heavy resistance from powerful, niche medical industry groups. Legislation to mandate the protection of intersex children’s human rights has been filed in at least six states, though have yet to pass. California’s 2020 bill was denied in its first committee hearing shortly after the committee chair received a $50,000 donation from the California Medical Association.
Through it all, there is tremendous reason for optimism. interACT, State Senator Scott Wiener, and Equality California passed SCR-110 in California in 2018. This non-binding resolution set a bar by making California the first state to officially acknowledge infant surgery as a human rights issue in a piece of legislation.
In 2020, after decades of mounting pressure from advocacy groups including interACT and Intersex Justice Project, two premiere children’s hospitals issued moratoriums on some types of infant surgery. Lurie Children’s Hospital of Chicago and Boston Children’s Hospital each made policy statements in support of intersex bodily autonomy, setting the stage for others to follow. Lurie pledged to investigate while delaying some surgeries for a period of six months, while Boston Children’s announced an indefinite moratorium on infant vaginal and clitoral surgeries. These institutional commitments are not in and of themselves complete—groups such as Intersex Justice Project call for firmer statements as well as reparations in the form of compensation to intersex adults—but they do represent a serious cultural shift. These policies have empowered health workers in medical institutions who recognize the ethical problems related to forced infant surgeries to speak up.
This year also saw milestones in research. Without social resources or community centers, and with medicalized stigma still a barrier, gathering intersex people for research remains a challenge. Many people are never introduced to non-medical language, and may not even know that “intersex” is a community term that represents an umbrella of experiences. The largest study of intersex adults in the United States was released via The University of California, San Francisco and interACT, with online survey responses from almost 200 participants. The data showed respondents reported much worse physical and mental health than found in the general population, exacerbated for intersex people who also face discrimination due to racism and ableism. While its results are grim, the very existence of this data is reason for optimism. The study calls for investigation into, and funding for, intersex health disparities
Advocates for intersex bodily autonomy know that the medical sector is a slow moving ship. Transformation of medical practice in response to human rights or ethical concerns can take many years. But the events of 2020 have set the stage for more progress in 2021 and beyond. Contextually, the needle on intersex bodily autonomy moved from complete non-acknowledgement in 1950, to two hospital policies on infant intersex surgeries passed in 2020. While 70 years is far too long given the amount of suffering these medical practices have inflicted, the timeline still represents progress in a grassroots social change movement.
The resources to solve this problem already exist. After all, it must be an easier demand that an institution do less—that they do no non-consensual or unnecessary infant surgeries. interACT and Lambda Legal published an intersex hospital policy guide in 2018 with complete instructions for medical institutions. Following that, interACT and The National LGBTQIA+ Health and Education Center at the Fenway Institute released a first-of-its-kind compendium on intersex primary care in 2020. Lurie of Chicago and Boston Children’s have started the blueprint at an institutional level. California continues to lead at the policy level, with its passage of SCR-110 and continued efforts toward enforcement legislation.
The vision of equal bodily autonomy for those born with unique sex anatomy feels closer than ever. We continue to call on human rights bodies to drive their member-states to action, on legislatures to create enforcement mechanisms to uphold intersex human rights, on the research community to fund work related to intersex health disparities, and on the medical community to do no harm.
Hans Lindahl is Director of Communications and Outreach, interact, USA.