IC4E Urges Dept of Health & Human Svcs: Depathologize Intersex Status


On September 20th, 2022, IC4E ED Hida Viloria spoke, by invitation, on a recorded zoom call with US Department of Health & Human Services (HHS) staff about ways in which the HHS can help foster equality for intersex American citizens. Viloria was joined by a small group of fellow intersex American activists on the call, which was held in response to President Biden’s June 15th Executive Order on Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals.

As Viloria acknowleged on the call, the President’s Executive Order is the first time that any US Administration has included intersex citizens in its fight for equality and human rights. They noted that, whereas a human rights based approach has been applied to L,G,B, and T citizens–resulting in the depathologization of homosexual and transgender status and the discreditation of Conversion Therapy by the American Medical Association (AMA)–intersex status is still pathologized by the AMA as a Disorder of Sex Development (DSD), and intersex minors are still routinely subjected to medical procedures in order to suppress or alter their intersex status.

Viloria noted that, in accordance with President Biden’s Executive Order, intersex status must be de-pathologized, and called on the HHS to help do so, as there can be no “equality” for intersex citizens while intersex status is deemed an inferior disorder. This has been the case since 2005, via the AMA’s “Disorder of Sex Development” (DSD) diagnosis of intersex status.

Viloria also called on the HHS to acknowledge forced or coerced intersex-erasing medical procedures as a form of Conversion Therapy, noting that they seek to suppress or alter intersex individuals’ intersex status, often irreversibly. They noted that this can be done by amending the Administration’s current definition of Conversion Therapy — efforts to suppress or change an individual’s sexual orientation, gender identity, or gender expression –to include “sex characteristics.” The revised, intersex-inclusive definition would thus read:

Conversion Therapy: efforts to suppress or change an individual’s sexual orientation, gender identity, gender expression, or sex characteristics.

Viloria called on the HHS to employ better methods for data collection on the intersex population, noting that–due to IC4E Associate Director Dana Zzymm’s groundbreaking lawsuit for X sex narkers on passports–intersex status is now acknowledged as a sex category by the federal government. However, intersex citizens are currently excluded from data collection of sex or gender, and a recent report on LGBTQI data collection continues this trend.

The report provides recommendations to the National Institutes of Health (NIH) for data collection of LGBTI populations, and states–at the very end, on p.108–that if data on the intersex population is sought, a separate question should be used. Viloria criticized the exclusion of intersex citizens from data collection on sex, noting that intersex people are defined by our sex characteristics, i.e. our sex, as intersex is a congenital variation of sex. However, the intersex population is excluded from data collection because questions currently ask which sex citizens were “assigned at birth,” but intersex citizens are not assigned intersex at birth. [We note that Colorado allows for infants to be assigned intersex at birth, so this may have already, or may soon, change.] In addition, Viloria pointed out that the socio-medical discrimination and abuses that intersex people face are based entirely upon the fact that our bodies do not adhere to male or female definitions of sex.

In order to be inclusive of these facts and obtain optimal, accurate data on the intersex population, Viloria recommended the use of an intersex-inclusive, two part question for data collection on sex. Tbe first part of the question would remain the same, asking whether citizens were assigned male or female at birth (as intersex citizens are not assigned intersex at birth), with an additional second question asking–“With or without a variation in sex characteristics?–Yes or No.

The HHS will be drafting a report based on findings resultant to their conversations with stakeholders om intersex issues. We are immensely grateful for their invitation to advocate for intersex equality, and extend our gratitude to President Biden and the HHS for listening and seeking to attain equality for the estimated 5.7 million intersex American citizens (based on the 1.7% prevalence statistic).