art by Meghan Carlton
The Experiences of Intersex Individuals
by Florence Kwok
David Reimer was originally born non-intersex until the age of seven months, when he was diagnosed with phimosis, a condition where the foreskin is unable to fully retract over the penis. At twelve months, he was forced to undergo genital reconstruction. Unfortunately, the procedure did not go as planned.
As a consequence of the surgery, David’s penis was burned beyond repair. In a desperate measure, his parents sought the advice of psychologist John Money from Johns Hopkins Hospital in Baltimore. Money persuaded them that sex reassignment surgery would be in David’s best interests. With the appearance of female genitals, hormonal treatments and psychological support through annual checkups, David could be raised to believe he was really female. So, at 22 months, David underwent an orchidectomy (surgical removal of both testicles), followed by castration, reconstruction of a vagina and reassignment as a female by the name of Brenda.
For decades, the alleged success of David’s sex reassignment was widely reported by Money and several others as proof that physicians could essentially create any gender out of a child. Given that the cosmetic alteration was performed early, “Davids” could be transformed into “Brendas,” so long as the genitals looked “right” and all parties agreed on the assigned gender. Money used this case to bolster his “concealment-centered model of care,” emphasizing that individuals are gender neutral at birth and healthy development is dependent on the appearance of genitals. But, as it turns out, Money’s approach was misguided.
David never identified as a female. Despite of all the medical efforts, including urination through a surgical hole inserted in his abdomen and taking hormonal treatments for breast enlargement, David was constantly ostracized and bullied by his peers. Finally, his parents accepted the truth, and he decided to assume a male gender identity. He since had injections of testosterone, a double mastectomy and two phalloplasty operations to reverse the reassignment. However, years of betrayal and mistrust between his parents and his true gender identity, coupled with depression, caused him to deteriorate emotionally and physically. On May 4, 2004, David committed suicide by shooting himself in the head. He was 38 years old.
When a child is born, the first question we ask is: Is it a boy or a girl? Our gender is assigned to us at birth and society’s binary conceptualization of gender shames any categorization outside of these two options. However, studies find that an estimated one in 2000 births occur with atypical external genitalia. The term “intersex” is used for a variety of situations in which a person is born with a reproductive or sexual anatomy that does not seemingly fit the typical definitions of male or female, according to the Intersex Society of North America (ISNA). As an example, while some individuals may appear “male,” they may possess internal reproductive organs generally attributed to females. Others may show in-between characteristics of typical male and female organs, such as enlarged labia to resemble a phallus or a scrotum that is divided to appear as labia.
Recently, the term “intersex” has been embraced as a gender identity even though some intersex individuals also identify as “transgender.” These two terms, however, are not the same. Transgender individuals may have typical genitalia and possess an internal wish to affirm their gender identity, whereas intersex individuals receive medical attention because of their atypical genitalia. “Hermaphrodite” is another common term ascribed to intersex individuals, but the ISNA advises against using this term to describe intersexuality as many find it misleading, as well as derogatory, since it implies the physiological impossibility of being both male and female at once.
Intersex individuals may potentially have both ovarian and testicular tissue (though there has never been an instance where both gonadal tissues function fully), which can occur in a multitude of ways. According to the World Health Organization, genetic mosaicism, where some cells have XX chromosomes and others have XY, most commonly causes this phenotypic phenomenon. A female fetus may be exposed to excess male hormones, which could be the result of a hyperactive SRY gene that is responsible for male sex determination. On the other hand, one of the two X chromosomes may be inactive, allowing the testosterone produced to overpower the female-characteristic estrogen that is formed and dispersed as a result of the X chromosome. Male fetuses may likewise have a lack of testes formation, encounter problems with testosterone resistance (commonly caused by Androgen Insensitivity Syndrome) or possess an inability to convert testosterone by the 5-alpha reductase enzyme.
The wide variations in genitalia formation as well as fluidity of sexuality and gender identity do not prevent both society’s and the medical realm’s obsession with labeling and compartmentalizing individuals. But why is society determined to categorize a body as either male or female and neglect the implications for intersex individuals?
Philosopher and social theorist Michel Foucault calls this inclination scientia sexualis, rendering sex as no longer a subject of morality but of clinical systematization and falsehood. Historical discourse on sex justified discrimination towards the intersex community, claiming to ensure the moral cleanliness of the social body by eliminating defective individuals and degenerate populations. This established a societal idea of sexual “morality” as a medical norm, conducive to concealing. Intersex individuals were seen under such conceptions in the public, with acceptance of their supposed abnormality viewed as dangerous to all of society if it were made open. This confined the discourse on sex to a context implying that there is an existing, definitive idea of “normal” sexuality.
Any diagnosis outside of this realm was deemed explicitly wrong and warranting further scientific examination. The result has been human sexual and behavioral studies reduced to the level of systematic, biological investigations of plant and animal reproduction. However, it is much more complex than that. Intersex individuals do not present a medical or social pathology, but rather a reflection of real biological variation and gender identification. Society often fails to realize that just as skin and hair color vary along a wide spectrum, so does sexual and reproductive anatomy. How one physically appears and how one chooses to identify oneself in terms of gender are two separate entities that should be devoid of scientific categorization. Intersex issues today need to be approached with more consideration and focus on the patient rather than societal norms.
Nevertheless, most medical centers still practice Money’s “concealment-centered model of care,” pushing the false assumption that gender can be determined by nurture rather than nature. In other words, it advocates that any child can be nurtured to be a male or a female if their genitals look convincing. As it turns out, this is not true. People with intersex conditions should be treated with the same basic ethical principles as every other human being—with the same respect for their autonomy and self-determination, truth of their physiological makeup and freedom from shame, and a lack of discrimination.
Though it may appear that Money has influenced an entire mindset that encourages genital standardization, the larger society is as much of a factor in this trend. Most believe intersex genitals present a medical problem and that sex reassignment allows the child to feel more secure in a specified gender category. Furthermore, it has been purported that untreated intersex individuals are more likely to end up with depression, suicidal tendencies and possibly a homosexual orientation. Thus, they must be “normalized” to whatever extent possible in order to avoid these problems.
However, as seen in the case of David and many other such individuals, sex reassignment surgery can be extremely harmful and cause the very issues that we are trying to avoid. As additional consequences, patients may stop taking hormonal treatments and medical care needed to stay healthy, parents may hide medical records from their children and children may hide their health conditions, resulting in grave psycho-sociological harm. It is necessary to respect the autonomy of the child in all cases. Only when the intersex individual requests reassignment after being fully informed of the risks and likely outcomes is the procedure justified.
These surgeries carry substantial risks to life, fertility and sensation. Thus, intersex individuals should have the right to talk to others who have had treatments, gain their views and possess the liberty to decide for themselves. Others believe that parents should consent to “normalizing” surgery in order to fully accept and bond with their child. This, however, is not a sufficient reason to risk an individual’s life and fertility. Psychological distress is a legitimate concern and should be addressed by properly trained professionals. It is important to understand that the individuals themselves are not diseased, but are led to these symptoms by society’s imposed belief that it is shameful to be different.
While doctors continue to perform genital surgery on infants, which they believe is in the patients’ best interests, they may consequentially induce lifelong physical pain, psychological trauma, scarring and a mass of other disturbances. It is difficult to predict a person’s gender identity with absolute certainty. However, one can be certain that children who grow with shame, secrecy and lies will suffer at the hands of medical providers who believe they take action with the best intentions.
Rather than the “concealment model of care,” we need to advocate for a patient-centered approach that allows a consultation between the individual, their family and the doctors, encompassing comprehensive education and consent. In this model, the child is assigned a female or male gender only after thorough consideration, giving parents a chance to talk with other parents and family members of children with intersex conditions and offering peer support to the entire family.
Over time, doctors and parents will hopefully recognize that gender assignment of intersex infants is preliminary and that the child may identify with a different gender later in life. Intersex children have significantly higher rates of gender transition than the general population, with or without treatment, which is a crucial reason why surgical therapies should not be implemented without the individual’s consent. An intersex child may later want genitals (either the ones they were born with or surgically constructed ones) different from what the doctors had imposed. Surgically constructed genitals are extremely difficult if not impossible to reverse, and children altered at birth or in infancy are largely stuck with the decisions of doctors.
Even beyond the importance of a patient-centered approach, society and medicine need to put an end to the idea that difference equates disease. Instead, we should strive towards a united goal of progression and social acceptance of human diversity. Continued sex reassignment of infants will only perpetuate societal stereotypes—a penis must be large and a vagina must be small, or a male and female must behave a certain way to justify their gender. Our society is often so determined to categorize a body as either male or female that we neglect to see the real difference, which lies in the cisgender mind and not the transgender or intersex body. When we choose to “cut now and ask about quality of life later,” our primary concern is taken away from the psychological implications and focuses only on the preservation of fertility for girls or the size of the phallus for boys.
We need to foster a greater consideration. We need to focus medical attention beyond clinical systematization and falsehood. We need to view intersex individuals as human beings.