Commentary Human Rights

Why I’m Disturbed by Screening for Intersex Traits in Utero

Claudia Astorino

I strongly feel that safe, legal abortion must be accessible for everyone, including intersex folks like me. But I also want to question why our society is attempting to erase intersex people, either before or after birth.

As an avid proponent of reproductive rights, I strongly feel that safe, legal abortion must be accessible for everyone, including trans* people, gender-nonconforming people, and intersex folks like me. That being said, I’m concerned—disturbed, really—by an increasingly common feature of prenatal care that’s affecting my community: screening for intersex traits in utero, and making reproductive decisions based on that screening.

And I can’t help but feel that this simply isn’t OK.

Since the 1990s, intersex activists have advocated for the right to bodily autonomy, first in the United Kingdom, later in the United States, and now globally. We’ve been working to end the practice of using medical means to solve a social problem: that people are uncomfortable with intersex bodies. To this end, we’ve been educating others that intersex people exist, what intersex means, and why the routine medical practices used to alter our bodies without our consent must end. Recently, however, intersex activists have become aware that in addition to speaking out against how intersex people are treated after birth, we need to talk about the fact that intersex people are being prevented from being born in the first place.

Intersex people are those who have a combination of traits traditionally considered “male” or “female” in the same body—and sometimes additional traits uncommon for typical male or female individuals. While external genital form is the trait most commonly thought of by those unfamiliar with intersex people, being intersex is not specifically about genitals at all, and not all intersex people have atypical genital form. There are many different way our bodies look and function. Knowing that an individual is intersex actually tells you very little about who they are, what their bodies look like, and how they identify. Intersex is more of an umbrella term that encompasses all the variations in what people can look like in terms of sex anatomy. Intersex people are often seen as being outside of “normal” male and female bodies, but we’re really a part of the natural variation in biological sex.

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The harmful framing of intersex people as a problem to be “fixed” largely grew out work by the New Zealand psychologist John Money in the 1950s, who argued that children could be happily raised as boys or girls regardless of their biology at birth with a supportive environment that reinforced the child’s assigned (what we today call) gender. Additionally, Money advocated that physically altering intersex children’s bodies to conform more closely to their assigned gender identity would reinforce that they were “normal” boys and girls, and recommended that surgeries be performed when children were very young so they wouldn’t be negatively affected in adulthood by remembering childhood procedures.

Money’s most famous case supposedly supporting these ideas was that of David Reimer, who was not intersex, but whose parents raised him as a girl on Money’s recommendation. Reimer had a circumcision that did not proceed as planned and his family felt he could not be raised as a boy without a “normal” penis. When Reimer was socialized as female in his younger years, Money declared his philosophy and methods successful and recommended them to “fix” intersex people. While Reimer ultimately did not continue to identify as female (he lived as a man before tragically committing suicide in his 30s), the legacy of Money’s ideas are still often considered legitimate by clinicians—and by society.

When being intersex is framed as a medical problem, parents and doctors are given proxy consent to make decisions about our bodies—decisions they aren’t really entitled to make. This is why cosmetic surgeries and/or other medical “treatments” have continued to be routinely performed on intersex babies and young children. Parents and doctors make decisions to alter the bodies of intersex kids, even though these procedures aren’t for medical benefits and children can’t consent to them.

We deserve so much better.

While intersex activists are fighting mainly for bodily autonomy, many of us have noted that screening for certain forms of being intersex has become increasingly common, the outcomes of which are unsettling at best. Surgeries and other treatments after birth and post-screening abortion are both performed to prevent intersex traits, especially atypical genitals—but it’s more than that. They are both ways to prevent people who don’t clearly fall into male or female categories from existing, because the fact that this happens makes people uncomfortable.

First of all, fetal screening isn’t necessarily effective for many forms of being intersex: Typical males, typical females, and people who are intersex often share the same chromosome makeup, or karyotype. Even if a karyotype suggesting intersex traits is known, doctors may be unable to confirm intersex traits in a fetus when atypical genital form isn’t present (or simply can’t be confirmed) via ultrasound.

And when apparently intersex traits are detected in a fetus, clinical facilities often describe being intersex with stigmatized language that, again, automatically—and egregiously—equates having intersex traits with having a medical condition. For example, one form of being intersex that can more easily be screened for in utero is congenital adrenal hyperplasia (CAH), in which more testosterone than average is produced by the body. CAH individuals may have XX or XY chromosomes, and depending on testosterone production may exhibit traits such as atypical external genital form. Some CAH people may also exhibit “salt-wasting,” or excess salt and water loss in urine—which, unlike atypical genital form, is an actual medical concern and requires treatment. However, this does not mean that the CAH form of being intersex is itself a medical condition. After all, ovarian cancer is a medical concern that is mostly exhibited by typical women, but this correlation does not make being a woman a medical condition.

When learning their child or fetus is intersex, the information that prospective parents receive from doctors can vary substantially. Some doctors make it clear that people perceive intersex individuals differently: Some advocate that intersex people don’t have medical conditions that need to be “fixed,” while others think they do. Other doctors simply present being intersex uncritically as a medical problem. It all depends on the doctor and their viewpoints. It also depends on the parents themselves: They may not have heard about intersex people before, or may not have access to resources to learn more. Plus, if health-care providers are using a lot of scientific jargon to explain how development works, parents may wind up more confused and scared than they were before—and ultimately believe there is something wrong with their fetus or child.

After CAH is identified during pregnancy, the prospective parent or parents can make several choices. The fetus may be allowed to develop naturally, which is strongly recommend by intersex activists. Alternatively, the fetus may be treated with the enormously controversial drug dexamethasone, which may prevent the development of certain CAH characteristics like atypical genital form, but may be harmful for fetal development and is not recommended by some doctors.

The final option is to abort the fetus that would be born an intersex child.

Sadly, there are many reasons intersex children are considered undesirable by prospective parents. They may not understand what intersex means and are afraid to have a child that cannot be easily categorized as male or female. There are many scenarios parents fear where others may react negatively to their intersex child: when the baby-sitter changes a diaper, when company sees their child running around without pants on, when family or friends or strangers ask, “Is it a boy or a girl?” and they’re not sure how to answer that question. Parents also fear their baby may grow up be gay or gender non-conforming because of a fundamental misunderstanding about body parts, sex, gender, and sexual orientation—which are different things and can’t be conflated into a single mish-mashed category. Parents feel the pressure to make the best decisions to protect their child and offer them a safe, “normal” life. Parents may feel that without medical intervention, they can’t give this kind of life to a child. Maybe some feel like it’s too big a risk to bring them into the world at all.

Prospective parents of intersex kids are afraid of a lot of things.

As an intersex person, it’s difficult for me to understand why we’re perceived as so scary that we’re unwelcome to exist in the world. I have had, and continue to have, difficulty reconciling my strong belief that all pregnant persons must have the right to choose to obtain an abortion with my anger and sadness that someone who wants to raise a healthy, beautiful child would choose not to raise that healthy, beautiful child if they were intersex.

I want to protect the right to choose. I also want to question why our society is attempting to erase intersex people, either before or after birth. Both aborting intersex fetuses and cosmetically (often surgically) altering intersex children’s bodies are ways to make intersex people disappear, go away. The implied message is that acceptable people aren’t intersex: Don’t be intersex, or don’t be at all.

I can’t endorse this kind of thinking. I want to live in a world with intersex people like me in it, where our bodies and personhood are valued. We need to raise awareness that intersex people exist, accept that intersex people are not medical conditions that need to be “fixed,” and celebrate intersex people and bodies as we naturally are. I’m admittedly just a little bit biased, but I think we’re pretty great, if I may say so myself. But without more awareness of these things, I’m afraid there won’t be many of us in the future. That’s not a world I want to live in.

I encourage all reproductive persons to be open to having a fantastic intersex person in their lives. We are very much worth choosing.

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