Rejecting the Tranquilizing Drug of Gradualism in Intersex Care

Note: Tiger Devore and I have decided to release joint statements; read his here.

For twenty years now, I’ve been trying to help intersex people push for the rights of children born with intersex conditions. For twenty years, I’ve been saying pretty much the same thing—the same thing as most of them, the same thing Tiger Devore has been saying for thirty years:

Children born with intersex conditions and differences of sex development (DSD) should not be subjected to medically unnecessary surgeries and hormone treatments until they are old enough to decide for themselves if they want these interventions.

Conditions known to increase physical morbidity and mortality (e.g., cancers) should obviously be treated, but all elective endocrinological and surgical interventions should wait. Children’s sexual bodies should not be subjected to invasive, dangerous procedures because adults are worried about the future. The adults should deal with their own anxieties directly, not via the children in their care.

Children born with these conditions should be assigned a gender as boy or girl based on a “best guess” approach, using our best science, recognizing that gender assignment for all of us is preliminary. Gender assignment requires no medical intervention, except some tests to try to ascertain diagnoses and prognoses. Best-guess gender assignment, without surgical intervention, has been occurring for thousands of years throughout the world; it is not a radical innovation, even if today our science helps us guess better.

Children and their families should be supported with professional psycho-social care and given access by clinicians to peer support. Parents should be helped to rise to the occasion. We should try to fix our troubled minds, not children’s healthy bodies.

Does this honestly sound so radical? I don’t think so. Every month now, I meet another family that has decided this approach is not so radical. They get it. They get that children come in different flavors, and that some of those flavors require us adult parents to do some adapting of our brains, our lives, and our own identities. They get this is what it means to be a good parent—to sort out the difference between atypical and unhealthy, the difference between a medical need and a social norm, the difference between changing a little bit of the world around your child and changing your child’s body to be retrofitted to a conservative world.

These parents get that it is not the job of doctors to be apologists for and even tools of toxic cultures. Many even believe it is the job of their children’s doctors to challenge toxic cultures in order to help their children.

As a consequence, these sensible parents and I don’t get why some pediatricians say they are “advocates” for children and then encourage parents to change those children to fit oppressive, outdated norms about sex. We don’t get why these clinicians who are reasonably troubled by the history of “reparative therapy” for sexual orientation in America think it is okay to use “reparative surgeries” to try to create children who will meet cultural sexuality norms. We don’t get why these clinicians don’t ask more of these parents than signing off on consent forms for surgeries that risk function, health, and more.

One might expect, fully twenty years into a very active intersex patient rights movement, that we’d be closing in on a convergence of worldviews between us activists and the clinicians who treat these children and families. Instead, we seem to be hitting a major impasse, one I feel caught in.

We activists have spent decades educating people around the world about intersex. We’ve been aided by novels, major sex-testing cases in athletics, social media, and the LGBT rights movement. So many more people now know about it and “get it.”

As a consequence, in various locations outside the U.S., governments, governmental advisors, and NGOs are moving to protect the rights of intersex children. They understand this is a human rights issue (although, granted, they don’t always understand that there are sometimes genuine underlying medical issues that call for medical treatment). They have concluded it is the right of every individual to decide the fate of his or her own sexed body unless there is some dire medical situation that requires intervention for health or life. Any other approach is understood as sexual abuse.

But the clinicians continue to offer and to carry out these elective surgical and hormonal interventions on babies and young children. True, they now say it is not their decision but the decision of the “parents.” They talk of “shared decision making,” although they do not talk about why this decision making happens before the child whose body is being invaded with knives and sutures and exogenous hormones has any chance of sharing in that decision-making.

Clinicians tell me parents have to be “empowered” to make these decisions because the children are theirs to raise. Yet they know they do not “empower” parents to do whatever they want: they would not sex change a male-typical child into a girl because his father was hoping for a daughter; they would not shorten a boy’s penis because his mother decided his life would ultimately be better if his phallic organ were relatively smaller.

In fact, such scenarios horrify them. But in my experience, they don’t use such hypothetical scenarios to examine their own consciences and to understand why they are still willing to facilitate or do certain procedures on intersex children that they would never allow on non-intersex children. It is hard for me not to feel as if they are still using here what George Annas termed (in the case of conjoined twin separations) “monster ethics”—a different set of ethics for children labeled abnormal.

Clinicians have chosen to see these issues as, at most, interesting philosophical problems that are not theirs to struggle with. They have sometimes invited those of us pushing these issues to speak in their venues, but at this point I think it is safe to conclude this is functioning not to change medicine but to absolve clinicians of their responsibility: You bring in Alice Dreger or someone else to raise the issues, and you have therefore “thought about them” and done your moral duty. Back to business as usual.

For years now, I have tried with my colleagues to bring attention outrageous activities occurring around intersex children. The two most egregious examples are the immoral deployment of prenatal dexamethasone for intersex prevention that has occurred under the leadership of Maria New and the clitoral stimulation “studies” performed by Dix Poppas on young girls whose clitorises he has previously shortened for social reasons. While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent. They have protected their careers even while they have known the price I and others have paid for trying to stop these travesties. They have chosen to be essentially complicit, seeing trying to call out and to stop these ethical travesties as the job of “activists.”

I am fed up with being asked to be a sort of absolving priest of the medical establishment in intersex care. I am tired of physicians outsourcing discussions of morality and outsourcing the dirty work of stopping genuinely unethical and dangerous clinicians. Being asked to be the speaker, the writer, the helper, or the whistleblower is increasingly making me feel—even while my words may be challenging the status quo—that my presence is shoring it up, by being part of a pretense that we have made real progress on the human rights issues before us.

I’ve been trying in the last year to assist with two projects in American medicine aimed at ultimately improving the care of people born with differences of sex development (DSD). One is the NIH-funded Translational Research Network affiliated with Accord Alliance. The other is the Association of American Medical Colleges (AAMC) DSD medial education project affiliated with the Axis Committee.

The people leading these projects are decent human beings. I would highlight in particular David Sandberg, who has, I know, struggled as much as I have with being on the margins and tortured by the history and the failures of individuals and systems. David pulled me into the TRN and I pulled him into the AAMC. I feel I am letting him down by leaving, although I also feel as if he and I also can’t seem to reach the same understanding about the limits of parental and physician “rights.” I see his approach, the approach of the TRN and I am afraid also the AAMC committee, as constituting what Dr. King called “the tranquilizing drug of gradualism.”

So I am leaving these projects. I can’t continue to help develop “conversations” around “shared decision making” that allow decisions to be made that I believe violate the most basic rights of these children. Working from within was a major goal of our early intersex work—to get in the halls of medicine and change it from within. But the truth is that medicine has not really let in our most basic criticism, our most basic insight, and it looks as if it will not do so anytime soon.

Medicine is going to have to fix itself on this. It can’t be fixed by us historians, philosophers, lawyers, ethicists, and activists. It has to be fixed by clinicians waking up and realizing what they are doing is so past the point of being morally legitimate, they will have difficulty explaining to people in thirty years why they were part of this.

We need, for children born intersex and with DSD, a medical establishment that has a political consciousness around human sexuality and disability. Until clinicians interrogate their issues of shame and anxiety around human sexuality and disability, they will continue to enact that shame and anxiety on the bodies of children who deserve better—who deserve doctors that let their parents know unequivocally that, while life can be challenging, no body is shameful.

Alice Dreger, PhD

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