Unnecessary, Un-consensual Medical Interventions on Intersex Children Need to Stop

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A United Nations report released in 2013 referred to the medical interventions that intersex children undergo without their informed consent, or that of their parents, as torture. 

Since then, several human rights organizations and agencies of the UN, including the WHO (World Health Association), have questioned the medical necessity of such procedures and call for the end of these forms of ill-treatment.

Physicians for Human Rights, the American Medical Association, three former U.S. surgeons-general, ACLU LGBT Rights Project, and Amnesty International have also criticized unnecessary, un-consensus medical interventions on intersex children.

In 2014, the Society for Pediatric Urology of the United States recognized the UN’s classification of the practice as torture while arguing that the surgery could still be justified as a form “to restore more normal visible anatomy, and avoid ambiguity which is often the parents’ wish.” 

Despite continuous international and national condemnation, physicians in the United States continue to perform surgeries on intersex children, including intersex genitalia mutilation (IGM). 

Sean Saifa Wall, an intersex activist, and public health researcher told us that “in the U.S., there are no laws that explicitly protect intersex children [from medical interventions] and that provide reparations and care for people who have been harm by these interventions.”

Intersex is an umbrella term “used for variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male,” as defined by interACT

Saifa was born with one of several documented intersex variations called androgen insensitivity syndrome (AIS). As a Black, queer, intersex person, he has “fought for space to exist.” He was assigned female at birth because he had a small phallus and undescended testis, and, at the age of 13, he was castrated and put on feminizing hormones.

“As I became more politicized and learned more about what happened to me, I was determined that it would not –it should not– happen to other people,” shared Saifa.

This sentiment is what fueled the Intersex Justice Project, co-founded by Sean Saifa Wall and Pidgeon Pagonis. The grass-roots campaign aims to end cosmetic surgeries on intersex infants and children in the United States. 

Beyond stopping institutions like Lurie Children’s Hospital of Chicago from performing IGM and other unnecessary surgeries on intersex infants and children, the IJP’s demands a public apology that acknowledges the harm committed to generations of intersex people and reparations for those who are survivors of these surgeries.

As the former president of interACT: Advocates for Intersex Youth, Saifa said that “[he] is very impressed by the young people that are coming up as activists in the intersex movement.”

Amongst these young activists, there’s 23-year-old Mari Wrobi. They are a Latinx, nonbinary, queer, intersex person who works at a shelter for LGBTQ youth experiencing homelessness. As a social worker and case manager, they currently help folks who are at risk of losing their home.

Mari has also done lobbying for SB201 in California, which would have delayed non-consensual surgeries on intersex infants and children until the infant/child could consent to the procedure. Unfortunately, the bill died in committee in January of this year.

“There was some confusion that we were trying to ban these surgeries. The truth is that we just want people to be able to provide informed consent, especially because it’s about their bodies,” explained Mari.

Even though SB201 did not pass, Mari insisted that there were many benefits to the bill being lobbied for two years. This is still a win for the intersex community. One of the advantages to the law being discussed in the senate for an extended period of time is that “[intersex activists] increased the knowledge and education of intersex people in senators and the general public.”

This was one of the first bills of its kind in the United States, and the first one to get as far as it did. Along with all other intersex activists who advocated for the bill, Mari expects that SB201 will serve as an example for other states to follow. They are hopeful that their experience and work will be used by others to develop a similar, better bill that might get passed in the future.

As a Mexican, intersex person, Mari has struggled with their parent’s traditional views on some core Catholic teachings. The history of catholicism in Mexico and Latin America dates back to the Spanish colonization period. As a result, Mexican and Latinx households tend to be very conservative to this day.

In the Mexican-American communities they have been part of and Latinx culture in general, Mari has noticed that there’s often a belief that people should not change their bodies or do anything that would make alterations to “God’s creation,” such as getting tattoos or piercings. 

When it comes to intersex bodies, the expectations are different. There’s usually a positive experience associated with intersex people changing their bodies to fit binary categories of gender. “I think there’s some level of…I almost want to call it hypocrisy, but that might be too harsh of a term,” confessed Mari.

Arguments from people who want to continue the practice of these violent treatments include “alleviation of parent’s distress, normalization of a child’s appearance, and improvement of potential for adult sexual relationships.” 

These rationales are all tied to heteronormative assumptions and traditional ways of thinking. 

Additionally, as noted by a Swiss National Advisory Commission on Biomedical Ethics, “[a]n irreversible sex assignment intervention involving harmful physical and psychological consequences cannot be justified on the grounds that the family, school or social environment has difficulty in accepting the child’s natural physical characteristics … If such interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child’s welfare.”

Parents’ and doctors’ pressure for intersex infants and children to undergo medical interventions disrespect the intersex patient’s bodily autonomy, create psychological trauma, and, most of the time, result in negative health consequences.