Scalpels Down! Let Intersex Children Choose

It is estimated that nearly 2 percent of the world’s population are born with an intersex trait.

Why you should care

This New York City health official is tired of parents being led astray on surgeries for infants.

Twenty-five years ago, while doing an emergency room shift as a third-year pediatrics resident in Washington, D.C., I met a patient who has been seared into my memory.

My patient’s gender was not immediately apparent. I asked questions to narrow the potential reasons for their abdominal pain, including one about menstrual cycles. The response revealed that they had gone through genital reassignment surgery as a young child without their consent.

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Dr. Oxiris Barbot.

Source Getty Images

After completing the medical history, I tried to start the physical examination but didn’t get very far. The patient said, “No offense, Doc, but I am not going to let you touch me. I am tired of having residents parade through my room and my body to see what it looks like to be the aftermath of intersex surgery done during the ’70s.” In fact, the only person they would allow to touch them was the original surgeon, even if that meant waiting in pain for hours. What I learned that day was that decisions made by adults out of ignorance and fear can leave lifelong physical and mental scars.

This Pride Month, the New York City Health Department and the New York City Commission on Human Rights are joining forces as vocal and active allies for intersex people. Commissioner Carmelyn P. Malalis and I believe everyone should be able to access gender-affirming care and that no one should ever be forced to undergo genital surgery.

It is estimated that nearly 2 percent of the world’s population are born with an intersex trait — that’s as common as being born with red hair or green eyes or being born as identical twins. Yet, intersex people frequently live in the shadows, stigmatized because their sex characteristics — chromosomes, reproductive organs, genitals or secondary sex traits — are different from what we consider typical. More alarmingly, the health and safety of intersex people is an urgent issue, especially among children.

 

An estimated 1 in 2,000 American babies is intersex and at risk of being subjected to nonconsensual surgeries to “normalize” their body at birth. The operations are often done because parents are provided with no other option and they believe surgery is best for their child. The problem is, performing surgery at infancy can be damaging and traumatic. Side effects can include sterilization, urinary incontinence and scarring, and there is no way to know whether the choice made will be consistent with how that child understands their gender identity later in life.

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Rosie Lohman, 6, has congenital adrenal hyperplasia and is one of a growing number of intersex children whose parents are raising them without early genital surgery.

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To be clear, the procedures are extremely powerful when sought intentionally and used to affirm someone’s gender. The issue around surgeries is not that they are unnecessary for all. The key is self-determination and autonomy — no matter how scary the unknown of having an intersex child, it is far worse for children to cope with the devastating outcomes of surgeries that were not consensual. In recognition of these social and physiological concerns, progress is being made, with a growing consensus among medical providers to defer surgical interventions until a child is able to have a voice in the process. 

The New York City Health Department and the New York City Commission on Human Rights respect a person’s right to choose how they identify, and we recognize that gender is incredibly diverse.

Our anti-discrimination law protects all New Yorkers from discrimination and harassment in the workplace, in housing and in public spaces. In 2016, the commission released extensive guidance about discrimination on the basis of gender identity and gender expression. Earlier this year, the commission updated the guidance and published final rules codifying that these protections encompass sex characteristics. The rules now include more examples of discrimination against intersex people.

In January, the department changed its policy on birth certificates to affirm nonbinary people, including those who are intersex, by providing an explicit nonbinary gender option, “X.” This step shifts the conversation and grounds it in the reality that gender is fluid.

We also require all employees to complete a gender identity and expression awareness training that provides information on gender, legal considerations and best practices to affirm all people.

Now is the time for doctors to respect the rights of intersex people, use compassionate care with children and only perform surgery when the health of a child is at imminent risk or it is consensual. Parents deserve to be given resources for social and psychological support when their children are born with intersex traits, not pressured into having doctors operate. New York City will continue to support and advocate for intersex people, and we call on others to join us as allies.

Dr. Oxiris Barbot is the health commissioner of New York City. Carmelyn P. Malalis is the commissioner of the New York City Commission on Human Rights.

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