A poster by intersex activist Pidgeon Pagonis
© 2017 Human Rights Watch
The Massachusetts Medical Society (MMS) passed a resolution supporting the principle that intersex children should not be operated on until they are old enough to make the decision themselves.
This deferral of all medically unnecessary intervention is in line with medical evidence, bioethics, human rights standards, and every intersex-led policy organization in the US.
“Intersex” refers to the estimated 1.7 percent of people born with sex characteristics – such as chromosomes, gonads, or genitals – that differ from social expectations of female or male. Except in very rare cases when the child cannot urinate or internal organs are exposed, these natural variations are medically benign and do not require surgery.
But in the 1960s, surgeons in the United States popularized “normalizing” cosmetic operations on intersex infants, including reducing the size of the clitoris or increasing the size of the vagina. These procedures are not designed to treat a medical problem and there is no evidence such operations help children “fit in” or “function in society,” which some surgeons say is their aim. Every intersex-led policy organization in the world opposes the operations, which carry risks of scarring, loss of sexual sensation, incontinence, sterilization, and psychological trauma.
For decades, intersex advocates have asked governments and the medical community to defer these surgeries until the patient can participate in the decision about what will happen to their own bodies. but a small subset of surgeons who defend the practice have thwarted efforts to protect intersex people’s rights.
The United Nations have condemned the operations 48 times since 2011. They’re joined by the World Health Organization, three former US surgeons-general, Physicians for Human Rights, the American Academy of Family Physicians – the largest support group in the country for intersex people and their families – Lambda Legal, and the ACLU.
Massachusetts senator and presidential hopeful Elizabeth Warren tweeted in October that “Intersex people must have a say in decisions that affect their bodies.”
Kimberly Zieselman, an intersex woman and executive director of Massachusetts-based interACT: Advocates for Intersex Youth, testified in support of the MMS resolution when it was introduced in 2018. The resulting policy states that MMS: “Respects the rights of the patient to participate in decisions and, except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making.”
It’s an example of how centering patient autonomy can withstand bias against bodily diversity.