This is part of a series where I am publishing my writing from the last couple of years. This piece is my final research paper for my college composition class in fall, 2018.
Sex and gender are widely confused and misunderstood. Sex is a label (male or female) assigned to a person at birth that is based on the genitals as interpreted by the doctor. Gender is the social identity that an individual identifies with and demonstrates through their clothing, behavior, job, role in the home, and more. As misunderstood as these seemingly simple concepts are thought to be; intersexuality specifically is even more unknown among the general population. It has been estimated that 1 in 2,000 births are intersex babies, which is approximately .5- 1.7% (ISNA). Intersexuality is defined by Merriam Webster as “ The condition of either having both male and female gonadal tissue in one individual or of having the gonads of one sex and the external genitalia that is of the other sex or is ambiguous.” That is a simple and fair definition. The Intersex Society of North America (ISNA) explains a little differently: “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.” The American medical community has a history of projecting shame upon intersex patients and their families through normalization surgeries and encouraging parents to withhold information from their children. Concealment approaches have created a culture of shame surrounding intersex bodies. Openness and educating people is the best way to counteract this problem.
A common misnomer is that intersex is synonymous with hermaphrodite. The word comes from Greek myths about the offspring of Hermes and Aphrodite. At age 15, Hermaphroditus merged with a Goddess and spent the rest of eternity with full sets of both male and female attributes (Avise, xii). This language has carried over to biology mostly to plants, single-celled organisms, and fish. These species can reproduce as male and female over the course of their lifetimes (Avise). This is not the case with intersex humans. No human being has ever been born with two complete, functional, reproductive systems (Avise, 3–4). The medicalization of intersex people has resulted in a diagnosis of “true hermaphroditism” which means a person has been born with one ovary and one teste or gonads with mixed sex tissue (Secret Intersex). Not all intersex people have true hermaphroditism, nor are those that are diagnosed with true hermaphroditism literally true hermaphrodites. Intersex advocates have been attempting to correct this misinformation since at least the mid-1900’s and consider the use of the term hermaphrodite to be a slur, but its use persists (ISNA). In 2006 the medical community suggested the term disorders of sex development (DSD) as an umbrella nomenclature for intersex variations, however, this has not been without controversy(Tamar-Mattis, 17). Activists complain that DSD is just a replacement for hermaphrodite and insist that they not be forced into the binary of male and female. Naming these variations “disorders” assumes that something that gone wrong and needs to be fixed, whereas intersex folks attest that treating them as if they are broken has led to physical, emotional and psychological harm(Tamar-Mattis, 25+).
Dr. John Money is well known in the medical field for his groundbreaking research into sex and gender. He is most prominent for his theory that gender is learned rather than inborn as reported in his 1972 book: Man and Woman, Boy and Girl. This was mostly based on his experiments with the Reimer twins, which followed an infant who was the victim of a botched circumcision and as a result received an orchidectomy (complete removal of testicles) (Holmes, 2). The injured child was reared as if he were a female child, and his twin was the perfect control for this study. In August of 1965, Janet Reimer gave birth to twin boys. At seven months of age, one of the twins, David (for ease of reading I will refer to this child with his chosen name, and he/him pronouns throughout the paper), underwent routine infant circumcision, at which time the electrical equipment malfunctioned and the penis was almost entirely burnt off. The damage was too severe to be surgically corrected at that time. Dr. Money personally advised the Reimers to go forward with removing the baby’s gonads along with attempting to create a rudimentary vulva and raising him as a girl. The family was told to never reveal any of this to the child or others, as that would automatically ruin the experiment. When the twins were seven years old, the doctor published his findings and announced his study to be a success. The family was never informed that this information would be published and used to support the medical model of performing sex assignment surgeries on intersex children. In his early teen years, David was extremely depressed, socially isolated and hopeless. Around the age of 15, the twins were finally told by their parents about David’s biological sex, the injury, the surgeries and experimentation. David quickly decided to physically and socially transition back to life as a male. He switched from estrogen to testosterone hormone treatment, cut his hair shorter, adopted his new name and eventually had top and bottom surgery to reflect his correct gender identity. Although life was certainly improved once he could live as a man, there was still much undealt-with trauma. He and his twin, Brian, were confronted with their own troubling memories, which were at odds with the official success story. It was at this point that David managed to convince Brian that they needed to go public themselves. Soon after, Brian was diagnosed with schizophrenia, possibly in relation to chronic trauma and abuse, and on July 1, 2002, he died of a suspected intentional overdose of his antidepressant medications. Only two years later David- now broke, unemployed, and separated from his wife- also ended his own life (Dr. Money and the Boy). Dr. Money caused infant genital mutilation to be the accepted standard of care for intersex infants and children(Holmes, 2–3). Gender theory has entirely changed in the last fifty years. Specialists now know that gender is influenced many multiple factors, but that attempts to change a child’s gender identity is psychologically traumatic(Tamar-Mattis). However, society has not quite caught up with this understanding of sex.
When an intersex child is born, the doctors and parents often make the decision to use “normalizing” cosmetic genital surgery to fit the baby into a binary understanding of sex (Tamar-Mattis). Parents were, and sometimes still are, told to keep the truth a secret and thus intersex people would spend their lives suffering the physical and psychological of multiple surgeries that were not adequately explained (Holmes, 8). The types of surgeries performed on interesex children range from correcting hypospadias (a condition in which the urethra is situated away from the tip of the penis.) in boys in order that they may stand to urinate when they are older to clitordectomies, gonadectomies and vaginoplasty surgeries (Boyse). The reasons are not for medical necessity but for social expectation, gender norms, and heteronormativity. For example, if a baby is born with a clitoris that is larger than deemed acceptable for a girl, they may receive surgery to make it smaller. Babies that are assigned female that have undescended testicles may have a gonadectomy performed. Not only is this a medically unnecessary surgery, but it can result in the need for lifelong hormone replacement treatment. No one can predict with one hundred percent accuracy any other person’s gender identity or sexuality but these surgeries are performed on children often before one year of age based on an assumed gender and sexual desires they will have as an adult (Roen).
It is unknown exactly how many children are subjected to these types of surgeries due to the lack of regulations on reporting this information. A 2016 paper in the Journal of Steroid Biochemistry and Molecular Biology conducted a literature review of genital surgeries performed on intersex children between 2005–2012; the average age was 11.2 months. Papers in The Journal of Pediatric Urology and The Journal of Urology published papers reporting 35 of 37 and 25 of 26 cases respectively choosing cosmetic surgeries for intersex children (Tamar-Mattis,48). The Human Rights Watch (HRW) released a 186 page report in July of 2017 regarding the effects of surgery on intersex infants. They guesstimate that up to 40% of infant sex assignment surgeries could be incorrectly assigning sex (Tamar-Mattis). These surgeries can cause damage to tissues, organs, and nerves that cannot be replaced or repaired, and scarring can cause irreversible damage. Clitoroplasties, vaginoplasties, and phalloplasties can cause loss of sexual sensation (ISNA).
In July 2017, three former US Surgeons-General, wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.” They said: “These surgeries violate an individual’s right to personal autonomy over their own future.”(qtd. in Tamar-Mattis, 9). In September of 2018, Lambda Legal published the first policy guide encouraging hospitals and medical providers to delay cosmetic genital surgeries on intersex infants and children until they are old enough to make their own informed decisions (Fraser).
In the case of ambiguous genitalia at birth, the doctor will do a chromosome test in an attempt to determine the child’s “true” sex. Not every intersex person is recognized as infant. Often there is nothing noticeably different until the child reaches puberty at which time they may begin to develop characteristics of the “opposite” sex. People thought to be female may not menstruate and that is when it is discovered that they do not have a uterus and/or vaginal opening (Handbook). Brown University professor emeritus, Anne Fausto-Sterling, frequently cites the layer upon layer of human biology and psychology that determines sex. It begins with the chromosomes an embryo has and continues through early life when adults perceive a baby as a certain sex therefore teaching gender expectations (Why Sex is Not Binary).
If a fetus develops Androgen Insensitivity Syndrome (AIS) it will have XY (“male”) chromosomes but the body will not be able to recognize testosterone and therefore the child will not develop secondary male characteristics such as body hair and deepening voice. In this case although the chromosomes may be a layer of “male”, the gonads and external genitalia will be layers of “female” or nonbinary (Handbook, 92–93). There are at least fourteen sex chromosome variations that affect how sex organs and hormones develop and work. One example is 46XX/46XY otherwise known as chimerism. Chimerism occurs when zygotes that would have developed into a set of male/female twins combine to become one embryo. While the physical appearance of Chimeric people can vary widely, they may have gonads and genitals that do not fit into the male/female binary. They also may develop differently than expected at puberty.
Laura S. Brown describes how and why intersex people may experience trauma in her book, Cultural Competence in Trauma Therapy, and how that trauma is compacted by the layers of sexism and misogyny in our culture. She goes into detail about the case of Arlene, a woman with AIS, who received a gonadectomy and vaginoplasty at eighteen months of age. After the surgery her mother (and when she was old enough, Arlene herself) used a vaginal dialator to keep the vagina open (Brown, 143+). A dialator can also be used to slowly enlarge the created vagina. The child had a second surgery at age eleven to make the vagina deeper and wider. During her childhood, Arlene was unaware of her intersex condition. She did not understand what was being done to her, or why she was different from other girls. When she reached the age of puberty, she was not told why she was not menstruating. As a teenager, she began to engage in risky sexual and alcoholic behavior. Around the age of 18 her parents finally disclosed her medical history and diagnosis. Eventually Arlene began to work with a psychotherapist and learned how her behaviors were related to the way she had been treated due to sex and gender expectations. She says, “There’s the irony. They built me a vagina so I could have so-called normal sex, and that left me too traumatized to ever want that. If they’d just left me alone I would be having sex the same way I am now and not been traumatized.” (qtd. in Brown 145). The unexplained, repeated, and prolonged experiences of adults in authority touching and penetrating a child’s private areas is traumatic.
Consider the added expectations placed on a child based upon their assigned gender. Not only would an intersex person potentially be traumatized from nonconsensual genital surgeries and follow-up treatments; but also from sexism due to gender stereotypes (Brown, 146). An intersex assigned female that expresses anger due to traumatic surgery is at risk for the added trauma from sexism. Women are expected to be emotional, but anger is the only emotion acceptable for a man. Angry women are considered too masculine. An intersex person that has been assigned male at birth is more likely to keep their sadness and fear bottled up inside lest they be called a wuss. Gender roles are so powerful that they are trained into a person before they even begin to speak and affect behavior very early in life.
On October twenty-first, 2018, the New York Times reported the Trump administration has plans to request before the end of the year that the Department of Justice legally define sex as male and female. Specifically that sex is “unchangeable, and determined by the genitals that a person is born with…any dispute about one’s sex would have to be clarified using genetic testing.” (nytimes.com). This definition would be established under Title IX which is the civil rights law that bans discrimination based on gender in governmentally funded education programs. This move would give schools and other organizations the ability to ignore the needs and human rights of intersex individuals. People whose bodies do not fit into a binary understanding of sex have always existed and attempts to categorize them medically has fallen short due to the endless combinations of variations in external organs, internal reproductive organs, and chromosomes. Sean Saifa Wall, an intersex activist claims that “Intersex people who are identified at birth have already faced the physical and emotional impact [referring to cosmetic genital surgery]of doctors’ biases against intersex infants and children. If this…were codified into law, intersex people would be subject to further trauma and medical violence.” (pinknews.co.uk).
In September of this year, California became the first state to pass a resolution calling on the medical community to delay non medical procedures performed on intersex children. This legislation directly quotes intersex people speaking up about their experiences(Victory). This is an important first step towards equal treatment for non-binary sexes, as more states consider similar legislation. Another idea is to make a third non-binary sex marker available on birth certificates and other legal forms of identification. Recently the state of Colorado released a corrected birth certificate to Mx. Anunnaki Ray after medically proving that he is intersex. Making this available nationwide at birth would reduce an enormous amount of stress placed in parents and children in situations of ambiguous sex.
Social media has played a big role in allowing the average citizen to become more educated in regards to human differences. Intersex activists are able speak for themselves directly to each other, the medical community, and anyone willing to listen and learn. This is an extremely valuable and important way to create change. The more open, honest, and knowledgeable people are, the less shame and trauma exist.