Elsa Eckenrode | Staff Writer

The ways intersex individuals have been treated by medical professionals in the past has largely been influenced by the medicalization of gender identity. It can be understood clearly through analyzing the history of intersexuality’s medicalization that it was done deliberately to preserve America’s ideals of normative gender. Intersexuality is a breach in the biological, binary system of gender that we have come to rely on. Medical professionals work strategically in how they frame intersexuality to parents, as well as society as a whole, as a bad and dangerous condition that must be fixed. Studying the medicalization of intersexuality and how intersex births are handled shows that physicians care more about typical models of gender rather than the principle of “do no harm.” It is important to demystify intersexuality as a taboo topic that many are misinformed about. The only way this can be done is by understanding the damage caused by medicalization on the intersex community.

I am not intersex, but as a member of a marginalized group that has historically faced medicalization this is an important topic to me, as I hope to see a demedicalization of intersexuality in my lifetime. Because of this though, it is crucial for me to define the words that I will be using. Intersex is “a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.” While it is important to recognize that some clinicians and parents have adopted different language to create distance from the term intersex due to its highly politicized and sexualized stigma, I am working to destigmatize it, and will use it over variations that have been proposed. I will refer to the genitalia of intersex people as “ambiguous” in some cases, but will keep it in quotes to acknowledge the discomfort this has caused in a medical context.

Estimates of the frequency of intersexuality vary greatly and are even contingent on the definition used. Alice Dreger, an intersex activist, defines intersexuality as “a wide range of anatomical conditions in which an individual’s anatomy mixes key masculine anatomy with key feminine anatomy. She places her estimate based off of recent literature to be about 1 in 1,500 live births.  Other estimates are around 1 or 2 of every 2000 births, which is the rate at which Down’s syndrome and cystic fibrosis occur. It is fairly likely that most people know someone with either Down’s syndrome or cystic fibrosis, but because its frequency is downplayed, and because it is considered taboo to talk about, most people do not realize they likely know an intersex person. In making intersexuality seem novel, we also come to view it as unusual and abnormal, which lends itself to believing it is unhealthy and should be treated. “Ambiguous” genitals are not new, nor are they painful or harmful to health. Intersexuality only occasionally indicates any sort of medical problem, though medicalization inherently turns it into a medical concern. The basic misunderstandings of intersexuality show that its medicalization crafted it to seem like something freakishly rare and dangerous, which functions to make people feel fear around a body that cannot be easily read as male or female.

A background in gender theory and sex assessment is necessary for understanding how surgical interventions and medicalization began. All schools of gender theory in the early 1900s believed that sex was located in an anatomical structure of the body, though there was no definite consensus. At the time, an assessment of gonadal tissue was possible only after death during autopsy. With the rise of new technology came the ability to do biopsies on the living to discern sex using gonadal tissue. Physicians were disturbed when they were confronted with case after case of feminine-looking women who had testes instead of ovaries.  They believed that it would wreak havoc on society if such a person was assigned male. In response, they imposed surgical and hormonal treatment to make them appear more typically gendered. Thus came the rise of gender reconstruction.

John Hopkins University was at the forefront of developing these invasive surgeries. The theoretical foundations that the interventions were based on can largely be attributed to psychologist John Money. John Money was a prominent sex researcher in the field of sexology, the scientific study of sex. His theory relied on a few key concepts. For one, he believed that development of gender identity depended on psychosocial rearing over biology. Secondly, children must have their gender identity fixed very early for a successful gender identity to form, preferably in the first 48 hours of life. Lastly, the psychosocial formation of gender identity depends on “standard” anatomy, meaning boys must have a penis and girls must have a vagina. While Money’s theory asserted that nurture was more important than nature, he did not believe a child with “ambiguous” genitals could be raised successfully as one sex without the “standard” genitals of that sex. He believed that a medical surgery and “social” surgery would be necessary for intersex individuals to develop a healthy gender identity.

Beginning with surgery, we can see through analyzing how sex was assigned to intersex infants it was done to preserve the possibility of heterosexual relations and reproductive sex and not the health of the infant. XY chromosomes are associated with the genetic male sex, but when an infant with “ambiguous” genitalia has XY chromosomes the operative options are either to make the penis look more “typical” or remove it completely and construct a vagina. Its removal is dependent on whether or not physicians believe it is capable of penetrative sex. While there is no universally accepted standard for what this length is, a general estimate seems to be anything less than 2.5 centimeters will be removed. XX chromosomes, which are associated with the genetic female sex, are always assigned female, no matter what the genitals look like. Physicians do this in order to preserve potential reproductive capabilities. In these cases, an enlarged clitoris will be removed. Again, there is no universally accepted standard for what makes a clitoris too large, but generally anything over 1 centimeter is removed completely. In cases of infants with XX chromosomes that have no vagina, one will be constructed or lengthened to a size capable of being penetrated. Intersex infants are assigned female at disproportionate rates for two main reasons: physicians value the possibility of preserving fertility in females over males and, simply put, it is easier to make a vagina. Respectively, this shows that decisions are made with reproduction in mind and that in many cases it is almost arbitrary as physicians opt for the surgery they find easier to perform. In fact, physicians assign around 90% of anatomically “ambiguous” infants as female. A disturbing statement from Johns Hopkins, where much of these surgeries were developed, says “You can make a hole, but you can’t build a pole.” In order for the construction of a penis to be considered successful, it must be recognizable as a “real” penis by being believably shaped and colored, being capable of becoming erect, expelling urine, expelling semen, and have a urethral opening at the tip. On the other hand, a vagina only has to be a hole that is large enough for penetrative sex. This shows the genitals are altered to cater to heterosexual sex rather than health. Hormones were used to curtail secondary sex characteristics from forming. Because their surgical interventions required maintenance, it can be understood that it was not really a be-all end-all solution.

“Social” surgery, which was to be carried out in tandem with medical interventions, was meant to be carried out by the parents and family. Cheryl Chase, the founder of the Intersex Society of North America, has widely discussed her experience as someone who is intersex. Chase had been born with “ambiguous” genitalia and was originally assigned male after doctors spent 3 days deliberating. At a year and a half old, she was admitted to a hospital to have her sex determined. At this time, she was reassigned female and had her clitoris cut off. She also endured a “social” surgery as well. Her parents “changed [her] name, combed their house to eliminate all traces of [her] experience as a boy… changed [her] birth certificate, moved to a different town, instructed extended family members no longer refer to [her] as a boy.” Money and other sexologists at John Hopkins believed that if the child were to know about their intersex condition it would disrupt their development, meaning that most intersex people grew up without having any idea of being intersex.  

The complications of these surgeries and the lies people were told about their bodies has devastating effects. Because surgeries are not followed to check for satisfaction, the medical community has largely been able to get away with mutilating bodies. There are actually no documented cases of intersex people who are pleased with their surgical results. In Hermaphrodites With Attitude, Chase writes about the emotional turmoil she experienced, seeing suicide as the only option to end the suffering doctors had caused her, “I fantasized killing myself quite messily and dramatically in the office of the surgeon who had cut off my clitoris, forcibly confronting him with the horror he had imposed on my life.” Doctors would lie about medical procedures being performed before considering telling patients the truth. Deception in medical practice is unethical but occurs due to gender theory that has yet to be backed up with patient satisfaction. Even with the development of more precise surgeries, complaints from the intersex community have not dwindled.

Viewing the medicalization of intersexuality as a cultural practice will help lay-people come to see its absurdity. One way we can do this is comparing it to a similar traditional practice in Africa. It has been highly politicized in America as “female genital mutilation” (FGM). America views the mutilation of infant genitals in the case of intersexuality as scientific and correct in a western industrialized context but barbaric in Africa. These processes are essentially the same. Examining these treatments together highlights how colonialism and science interact to silence intersexuality while controlling how FGM is perceived in America. The difference in how we view intersexuality and FGM lies in how it is constructed by the medical community. We have assimilated the poor treatment of intersexual individuals into our culture. Another way we can see this is by examining cultural ideals of sexuality. Intersex bodies violate the ideas of sex that our society depends. Both FGM and the cultural dependence of ‘opposite’ can be used to highlight how ingrained our ideas of intersexuality are. Taking a step back and understanding it as a cultural practice rather than medical truth will be a crucial part in changing its treatment in America.

As a phenomenon, medicalization has been used as a form of social control and its consequences have been detrimental to the intersex community. Because the medical community works so quickly to mutilate the intersex body, and because they make the practice out to be normal, intersexuality is not known to exist as widely as it truly does outside of specialized medical practice. Even more unknown is the tragic history of how we have come to let this happen, and why it still persists today. Spreading awareness is the first step to seeing gender identity being demedicalized. Though the medical community may want people to believe intersexuality is sick and needs to be treated, it is society that must change how they view the intersex body. One of the first ways to do this is through education. Destigmatization relies on fully understanding intersexuality. Further, it is important to know that the “corrective” surgeries doctors perform do more harm than good. Doctors have ignored the intersex community for decades. The medical community needs to accept their faults and develop new ways to handle intersex births that focus more on the psychological well-being of the child.