Doctors shouldn’t define the norm

BODY LANGUAGE

On October 26 1996, a small group of activists picketed outside an American Academy of Paediatrics conference in Boston to draw attention to the fact that cosmetic surgeries were routinely being performed on intersex children. Now, October 26 is Intersex Awareness Day every year.

To mark the occasion in 2017, intersex advocate Pidgeon Pagonis led a protest in front of the Ann & Robert H Lurie Children’s Hospital of Chicago. More than a decade ago, doctors at the hospital performed a medically unnecessary surgery to alter Pidgeon’s clitoris, vagina and gonads without Pidgeon’s consent. For Pidgeon and the others, the protest was both political and deeply personal.

In anticipation of the protest, the hospital issued a friendly public statement, saying: “We are committed to open communication with the intersex community and fully respect the diversity of opinions that exist in affected individuals.” And yet a leaked internal communiqué from the hospital struck a rather different note. In it, the hospital described the protesters as advocates of “an extreme position on the issues related to intersex individuals”.

These are two rather different messages. The first expresses openness to dialogue, whereas the second dismisses it. But, taken together, the conflicting messages reveal some of the underlying assumptions about surgery on intersex children. More to the point, they shed light on why doctors continue to perform medically unnecessary, high-risk procedures on intersex children too young to consent, even though the practice has been controversial for decades.

Surgery conducted on most intersex infants is cosmetic: its aim is to bring the appearance of the body into line with established gender norms. Some doctors justify these procedures in terms of psychological wellbeing. They argue that surgery is a humane intervention for children with ambiguous sex characteristics who might otherwise struggle to fit in. And they say they are helping parents, for whom they can produce a “normal-looking” child.

Intersex activists argue that social attitudes and medical practices — not their bodies — are the problem. In confronting harmful stigmas, they have common cause with their lesbian, gay, bisexual, and transgender counterparts. Not too long ago, “conversion therapy” for gay or lesbian people — sometimes involving electroshock procedures — was an accepted medical practice. And transgender people still commonly receive medical diagnoses that turn identity into pathology.

We already know that intersex bodies are a natural variation on a spectrum of body types. That being the case, we should not allow discomfort with ambiguity to be imposed on the bodies of children who are too young to speak or understand what’s going on. This applies especially to medical practitioners who perform cosmetic surgery on intersex infants. They need to take a step back and examine the cultural assumptions underpinning their medical opinions.

To understand how cultural change can take place, it helps to take an anthropological approach, which invites us to look at our own culture from a different perspective. When we do this, what once seemed strange about another culture becomes familiar, and aspects of our own culture that we took for granted can start to seem strange.

How cultures deal with ambiguity is a central question of anthropological inquiry. Intersex people’s bodies challenge fundamental cultural assumptions about sex and gender in many societies. But now that we have ample knowledge about the issue, we can either adjust these assumptions or we can insist that individuals conform to existing cultural norms.

The current medical paradigm does the latter. And yet it is not hard to read the tea leaves on this issue. Medical experts and a host of human-rights groups believe that only intersex individuals — not their parents or doctors — should decide whether to undergo surgery.

Outside that hospital in October, one placard read: “Our ‘extreme’ position: first do no harm.”

Respecting diversity is not extreme. The extreme position is that intersex bodies need to be made “typical” with surgical intervention without giving the people who inhabit those bodies a say in the matter.

Hospitals would do well to reconsider what they are doing. When we look back at this issue in the future, it will be clear who, the surgeons or the protesters outside the hospital, was standing on the right side. — ­© Project Syndicate 1995–2018

Graeme Reid is the lesbian, gay, bisexual and transgender rights director at Human Rights Watch and a visiting lecturer in anthropology and women’s, gender and sexuality studies at Yale and at the Institute for the Study of Human Rights at Columbia University

Graeme Reid
Graeme Reid works from Profile on LinkedIn. Professor of Science and Research Policy University College London Graeme Reid has over 1447 followers on Twitter.
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