The Push to Ban Intersex Medical Intervention

Lane Palmer

Disclosures

Urol Nurs. 2019;39(3):147-149. 

In This Article

Focus on California

Last year, a resolution was passed in the California state legislature that declared non-consensual intersex medical interventions to be an abuse of human rights. Support for the bill was galvanized by political language decrying homophobia, patriarchal social orders, and heteronormative medical paradigms. Surgeries were characterized as forms of torture, violence, and genital mutilation.

Such language should have no place within the confines of this discourse. To characterize the surgeries as torture, violence, or genital mutilation is to diminish the cautiousness with which surgeons approach these procedures, insult the moral integrity of the surgeons, and cheapen the relief of those who have benefited from the surgeries. The sheer gravity of the issue behooves us all to treat this discussion with the language it deserves, as well as to acknowledge the difference that exist between all varied identifications common in discussion of sexuality in our current society.

In a state that has a history of being at the forefront of social progress, the intentions of well-meaning individuals have been coopted by a political agenda that has exploited a vulnerable class. Patients who qualify as "intersex" are a small minority of the population (about 1 in 1,500 to 1 in 2,000) (Intersex Society of North America, n.d.), with the variety of individuals who have one of the many conditions constituting even smaller classes of minorities. That reconstructive surgeries have proven to be highly successful in many cases simply does not fit the narrative of social progress; thus, these individuals have been silenced in the political arena.

For many in these intersex communities, it has been heartbreaking to see their medical conditions politicized. Patients with CAH generally regard their condition not as a political issue, but as a life-threatening medical one. For women with CAH, it is a matter of their ability to properly menstruate, a matter of their ability to safely have sex, and a matter of their ability to have children. It is not an issue to be exploited by a political agenda that gives little voice to those it purports to protect.

Right now, discussions are under way in California to draft a bill that would include an outright ban on any procedure performed in infancy deemed to be medically unnecessary. The consequences of such legislation would be disastrous.

A primary issue is that such legislation would completely ignore the distinctions and gradations between the various conditions labeled under the umbrella term "intersex." There are approximately 30 different conditions presently qualified as "inter-sex," each distinctly unique, each requiring its own specific treatment and set of considerations. It would be immensely foolish to imagine that such a wide variety of conditions could be singularly treated in any reasonable way, medically or legislatively. Unfortunately, the legislation would include groups almost certain to be negatively impacted.

To give one example, patients with CAH would find themselves subject to the dictates of such legislation despite their own strenuous objections to even being labeled as intersex. The proposed bill would make it illegal to perform genital reconstructive surgeries on babies born with CAH unless medically necessary. In a Finnish study on women who had undergone such surgeries in childhood, none of the women thought it was performed at too young of an age. Proponents of the legislation often speak of the psychological trauma done to infants through such surgeries, yet when questioned on their memories of the operations, most of the women either had positive memories of the experience or no memories of it at all. Of those who had distressing memories, their surgeries were generally performed at older ages after infancy. This research indicates that waiting to operate on patients with CAH only invites the possibility of psychological trauma.

This raises another issue with the legislation: Should this be a state decision? Activists have repeatedly made this an issue of human rights, and in many ways, it is. In cases where studies have shown it is better to wait, it would certainly be an egregious malfeasance to make the decision for the child. However, it would be equally egregious to hand that decision over to government officials and politicians. In cases like CAH, where the medical evidence is overwhelmingly in favor of early surgery, the proposed bill would have a limiting effect on parental choice, to the detriment of the children.

Such legislation would also have an unintended freezing effect. The medical field is constantly evolving. Surgical techniques are rapidly improving, psychological models are being enhanced, and medical professionals are regularly revising their understanding of the intersections between these various fields and how they affect patients. Legislative action would have the effect of locking the current paradigm in place, stymying future developments.

One of the most alarming aspects of the legislation has been the impetus behind it. Legislation on medical issues should be informed primarily by medical professionals and those directly impacted. Yet the movement in California has been driven in large part by people who have neither the medical expertise nor the personal stake to justify their continued outrage. Actual patients with CAH find themselves frustrated at seeing their own condition so poorly misrepresented. Many of them find it insulting to see their treatments referred to as "genital mutilations" and "torture," when for them, it was anything but.

In addition, many in the intersex community see a latent homophobia in the recent legislation. The preference for delaying surgery and taking the decision out of the hands of families belies a preference for children to grow up transgendered rather than homosexual. What should, in essence, remain a concern regarding the sex of an individual has become cast as a judgment against their sexuality. What's worse, activists and the legislation they're proposing would allow children to make decisions regarding surgery at their most vulnerable period of development. Research has consistently shown that the majority of children with gender dysphoria outgrow their feelings of dysphoria by puberty, and by their adulthood, identify as homosexual, not trans-gender. Another study has also detailed the prevailing attitudes on transgenderism, noting that in many ways, being transgender has even come to be seen as more acceptable than being homosexual (Littman, 2018).

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