The Same Clinics

Apologies, dear readers, for the long silence. Long story short – ELi’s board of directors finally replaced me as head of the local news organization I founded in 2014 and I had to help with the transition. Then I went off to two conferences about the news profession in D.C., took a hiking vacation in Colorado, went to a family memorial service in Washington state, and came back with Covid. Let’s just say Paxlovid is a great drug, but the FDA should really change the term “inactive ingredients” to “other ingredients.” (Hello, lactose!)

People keep asking me if I’ve seen “Every Body,” the new documentary about intersex rights. Not yet. But I’m a long-time fan of the work of Safia Wall, one of the three intersex people featured, and based on Wall’s participation and media reports, it sounds like an important and well-done work and I look forward to seeing it.

In the meantime, I keep thinking that someday a good documentary might be made about how the hospital-affiliated clinics managing children with gender issues started out as the clinics dedicated to hiding intersex.

Maybe the cultures of those clinics have changed radically since my days in the intersex rights movement. But I don’t think they have. And that’s concerning, because those clinical cultures would hardly be ideal for children brought to them because of gender.

To review, intersex is an umbrella term used to describe several dozen inborn conditions, all of which involve some blending of standard-male and standard-female genetic, anatomic, or physiologic elements. (Sexual “standards” are determined by implicit or explicit consensuses of medical experts. Often but not always, the standards have been informed by data.) The medical profession also refers to these conditions as DSDs – differences of sex development.

Historians (particularly Sandra Eder) have traced the origins of the contemporary multidisciplinary approach to pediatric intersex to Lawson Wilkins, pioneer in pediatric endocrinology at Johns Hopkins University. Wilkins and his colleagues in urologic surgery and psychology teamed up to try to rescue parents from the perceived psychosocial hazards of sexual ambiguity by trying to reshape their intersex children surgically and stabilize them hormonally and psychologically.

For pragmatic reasons, starting in the 1930s, these clinics purposefully made intersex primarily about gender – a patient’s sense of self and social presentation. In a world where everyone was expected to be simply a boy/man or girl/woman, intersex represented a danger at best and a disaster at worst.

Clinicians consequently framed intersex (the sexed body) as a problem to be solved in the service of attaining a “successful” gender. As I documented 25 years ago in Hermaphrodites and the Medical Invention of Sex (Harvard University Press, 1998), “successful” meant a convincingly heterosexual man or woman.

The clinicians who worked in these pediatric intersex treatment centers prioritized appearance and identity. Intersex activists have documented with their autobiographies and their flesh what was not prioritized: preserving their reproductive capabilities and their sexual function.

Genders were chosen based on highest odds of “success,” a methodology called “optimum gender of rearing,” one that generally favored making intersex children into girls, as girl genitals were seen as relatively easy to construct. Again, the focus was on appearance and gender identity – on passing – not on erotic function.

Many patients were deceived about their medical histories in a soft-pedal approach to help them settle into the genders chosen for them.

In the years I was active in the intersex rights movement – from about 1996 through 2006 and then again when special projects called – I got to know a fair number of the clinicians on these teams. There could never be any doubt that the vast majority was dedicated to their patients’ well-being. These were not bad souls. I still count only three, maybe four, who seemed to be terrible people – obsessed with their own advancement and genuinely unethical.

But these hospital-based clinics had all inherited a particular framework that did not value what in medicine is called “watchful waiting.” Valued, instead, was the elimination of ambiguity and uncertainty.

In the intersex rights movement, we asked for – but almost never saw – clinical conversations with intersex children and teens about the plethora of outcome possibilities, physical and in terms of identity, for their conditions.

I’m not aware of any clinic that ever purposefully tried to impart to intersex children the message their unchanged bodies were acceptable and “normal for them.” There were a small number of fantastic clinicians who worked on imparting these messages through support groups, but those people were seen by their colleagues as pretty radical.

We tried again and again in the early intersex rights movement to get clinicians to articulate the goal of intersex “treatment.” We tried especially when they objected to our claims – based on their own writing – that the real goal of their treatments was “believable” heterosexual men and women. Their practices were so often reactive to worries about parental anxieties, borne of disciplinary habits, it seemed impossible to move them to a discussion of patient-centered longitudinal care of the sort that would necessarily accept ambiguities and developmental unpredictability….

There have been moments where I’ve wondered if dealing with non-intersex children brought in for gender concerns might improve these clinics’ treatment of intersex children. Maybe the clinics could see the importance of putting off body-changing elective interventions until children are ready to participate maturely in their own care? Maybe they could acknowledge that gender development can be highly unpredictable, even for non-intersex children, and that that’s okay?

Instead, I fear the older culture persists.

What would the best care look like in these clinics?

First and foremost, it would be honest, including in its recognition of ambiguity and developmental uncertainty. Clinicians would be honest about this with parents, children, and teens, not speaking of ambiguity and uncertainty as tragedies or medical problems but as inevitable and often good parts of human life. Parents crave certainty from their pediatricians (and their children and the rest of the world). But it isn’t pediatricians’ job to promise or produce it.

It would recognize the importance of long-term self-determination – in terms of gender identity but also erotic and reproductive function. If there is one thing we have learned painfully well from intersex adults, it is that removal of healthy sexual tissue should be elected only by the patient and only after the patient is mature enough to engage in frank discussions of the erotic sensation that may be threatened, lost, or replaced with pain. (Here, I find it hopeful that some DSD clinics now include pediatric and adolescent gynecologists, who are likely to be attentive to erotic function.)

It would support generous understandings of sex and gender diversity and employ social workers and other counselors equipped to train parents and children to deal with bullies, jerks, sexual predators, and the overly curious. (We know from far too much history that many intersex children treated in these clinics ended up especially vulnerable to predation, including in clinics.)

It would forestall any attempt to treat parents via their children and see anxious parents as needing their own care.

It would encourage families, children, and teens to meet each other and talk with each other. Nothing addresses feelings of isolation, loneliness, and confusion like peer support.

It would engage patients in bodywork – learning mind and body exercises that help a person feel strong, centered, and in charge of her/his/their body.

And finally, it would stop losing patients to follow-up. At this point in history, we should know far more than we do about what has happened to the children who have gone through these systems. Longitudinal follow-up means honoring them and having more information to share with those who come next.

There’s no doubt that what it means to provide care for these populations is complicated. But, by now, we should be well past any fantasies that it should be decided via phobic legislation or insurance plans, and clinicians should be engaging each other and their patients – including especially their former, now-adult patients – in conversations about clinical culture.

Maybe there is still a chance that listening to intersex adults who have been through these clinics could mean improved care for every child in them.