Recently two prominent children’s hospitals have made unprecedented announcements. Boston Children’s Hospital and Chicago’s Laurie Children’s Hospital announced that they would stop performing certain surgeries on children born with intersex traits. These announcements come after huge direct efforts by advocacy groups like The Intersex Jusice Project, lead by Sean Saifa Wall and Pidgeon Pagonis, and InterAct, a national intersex youth advocacy group.
Anatomical sex exists on a spectrum, and as many at 1.7% of individuals are born with intersex characteristics, or anatomy that are not on the extremes of the male and female spectrum. This can include gonads, internal or external genitalia. Ignoring this fundamental biological fact, physicians have surgically assigned children born intersex to be either male or female since at least the 1950s. In practice, this has meant the performance of one or many non-benign, invasive surgical procedures on non-consenting children meant to make their genitalia more ‘typical’ of societal expectations.
Multiple reports from individuals who underwent these procedures and outcome studies highlight significant long-lasting psychological and physical consequences. Calls for the cessation of medically unnecessary cosmetic procedures on children with intersex traits have been mounting and going unanswered for decades. Multiple healthcare organizations including the Gay and Lesbian Medical Association, American Academy of Family Physicians and the World Health Organization have called for deferral or cessation of these procedures on non-consenting children.
Laurie Children’s Hospital issued an apology and stated that their “emphasis on early genital surgery to make genitalia appear more typically male or female” was wrong. Boston Children’s Hospital specifically stated it would stop performing clitoroplasties and vaginoplasties, two particularly controversial cosmetic procedures, on patients too young to participate in the decision. Though these are prominent wins for the intersex community, leaders highlight more still needs to be done. In a statement detailing how decades of community activism and organization lead to these hospital policy changes Kimberly Ziselmann, the InterAct executive director, calls on Boston Children’s Hospital “to include all types of intersex surgeries in their protections, and to create programs to support the countless youth and adults who were already harmed.” Similarly, the Intersex Justice Project asks not only for the cessation of these surgeries but for reparations in the form of medical care and psychological support.
Though not passed into law, state legislatures in New York, California and Connecticut have proposed bills to defer surgeries on intersex children. Advocates continue to call for legislation that would limit medical or surgical intervention unless proven medically necessary. Physicians and surgical organizations such as the California Urological Society have opposed such legislation citing that these bills wrongly take a one size fits all approach to the heterogeneous set of conditions that comprise being intersex and claim more detailed knowledge of clitoral neurovascular anatomy has led to improved techniques and outcomes. They do not provide citations for these claims.
While it is true that intersex is an umbrella term for multiple phenotypes, the use of its heterogeneity as a justification to continue known harmful and medically unnecessary procedures is wrong. Empirical evidence that clitoral surgery has been shown to compromise future sexual function has existed for over a decade. Not to mention the numerous anecdotal accounts of just how harmful this practice is. The same is true for vaginoplasties. Both anecdotal and empirical evidence support the deferral of these medically unnecessary and often-times traumatic practices.
It is not surprising legislation is beginning as medicine’s approach toward intersex individuals has been slow to reconcile with these glaring truths, and the field continues to resist drawing lines between necessary and unnecessary procedures. Despite the rhetoric of this issue being “too complex” or “nuanced” to draw hard lines it is actually very simple. There is no medical need to cut or alter healthy genital tissue without consent. Hopefully hospitals will continue to listen to intersex individuals and activists who have been saying this for many years and work toward reconciliation with this population they have deeply harmed.