by Alexandra von Klan from Inter/Act Youth
Within the vast realm of young adult novels, I’m an amateur reader. I’ve yet to devour the Hunger Games trilogy and, up until a week ago, I had zero point of reference to John Green (although, after looking him up, I sobbed during the trailer for The Fault is in Our Stars). I don’t claim authority on YA fiction. Even so, I respect the genre’s capacity to explore universal, relatable themes within diverse sub-genres, including the gradually increasing collection of LGBTQ YA fiction. As a feminist, it’s easy to side with YA lit groups calling for more diversity in books by increasing representation of teen protagonists abandoning white, male, straight, able-bodied cliches. Even so, intersex teen protagonists represent an even smaller fraction of the YA canon.
Ilene W. Gregorio’s None of the Above is changing that. And as an intersex woman (and temporary YA reader) that matters to me.
NOTA reveals compelling, “coming of age” story of Krissy, a seventeen year-old high school senior who seems to have it all. As far as popular girl stereotypes go, she fits the bill (almost) completely. Krissy’s the type of person I wanted to be at sixteen; popular, driven, liked by everyone. As homecoming queen and an all-star track athlete, she’s blessed with the three b’s: beauty, brains, and brawn. She’s not your typical high school mean girl, though, exemplified by her intense feelings of regret when she wins the homecoming title over her best friend, Vee. At one point, she even considers surrendering her tiara as a token of her loyalty to Queen Vee. Sam, Krissy’s jock boyfriend, is quick to remind her that she won honorably because she treats people like they exist.
Krissy’s seemingly flawless world is jolted, however, when she learns that she was born intersex–described as having sexual or reproductive anatomical traits that do not neatly fit with social expectations of maleness or femaleness. After winning homecoming queen, Krissy finds herself in the back of a limo with Sam, drinking champagne out of a sprite bottle, and consents to “go all the way” for the first time. A few days later, Krissy nervously visits an ob-gyn to rule out HPV contraction, but leaves with unexpected information about her physiology instead.
The ob-gyn expresses concern Krissy hasn’t started her period yet, a fact Krissy previously justified as a consequence of her intense track training. She also notices two small hernias protruding from Krissy’s lower abdomen, which are later confirmed as Krissy’s internal testes, instead of ovaries. A blood test indicates her chromosomal sex is XY and an ultrasound shows no presence of a uterus. These discoveries ultimately point to Complete Androgen Insensitivity Syndrome (CAIS), an intersex variation estimated to affect 2 to 5 per 100,000 people. CAIS is one of (at least) forty variations of sex anatomy affecting a person’s chromosomal, gonadal, genital, or reproductive development.
Like Krissy, my physiological make-up includes sex traits stereotypically understood as markers of male sex, even though my birth certificate reads the opposite. You can’t tell by looking at me, though, because my chromosomes aren’t visible and, unless we know each other well enough, you probably wouldn’t guess I was born without gonads! I grew up thinking that a woman makes estrogen and gets a monthly period, yet my body doesn’t do either of those things without help from…science!
Intersex traits are not new. As my Inter/Act friends have proclaimed, we are not rare, just invisible. Evidence of intersex traits in humans have been recorded for as long as Western science has sought ways to classify and categorize the sexes. This categorization inevitably resulted in a process of othering intersex bodies because we deviate from socially accepted,scientifically reproduced norms. Enough with the intersexplanations, though….back to the novel!
The ob-gyn initially generalizes Krissy’s biology by stating “I think that you may be what some people call a hermaphrodite.” At this point, I could feel my heart rate increase. Hermaphrodite, an antiquated term once widely used by the medical community, can be stigmatizing and dehumanizing to members of the intersex community. That point of view isn’t universally adopted by intersex activists, some reclaimed hermaphrodite as an empowering identity. The H-word, as Gregorio refers to it, is quite often the only point of reference people have when learning about intersex traits for the first time.
In my personal life, I’ve encountered a handful of folks who don’t know what intersex means, but when I give its definition they are quick to retort, “Oh, you mean hermaphrodites?” For me, this is a teaching moment. Unfortunately, the H-word has been historically used, inside and outside of medical lit., as a derogatory slur. Gregorio quickly corrects the ob-gyn’s characterization of Krissy’s biology by inserting, “…the better term to use is intersex”, into dialogue and, in later chapters, cites another contested term DSD, or Disorder/Difference of Sex Development.
What happens next is a common scenario among people newly diagnosed with CAIS. In a room with Krissy and her father, the doctor explains that Krissy’s otherwise healthy, sex hormone producing testes pose a significant cancer risk. In the novel, readers learn the incidence of cancer from AIS occurs in fewer than one in one hundred people. By comparison, the well known incidence of breast cancer is 1 in 8. Hearing the big C-word, Krissy and her father want to take immediate surgical action. In an attempt to mollify their trepidations, the ob-gyn characterizes the situation as “not technically a medical emergency” and provides a specialists referral to find more answers.
Kudos to Gregorio for weaving this interaction into Krissy’s story. There are reported cases of cancerous gonadal tissue in people with CAIS, but cataloguing a healthy body part as “pre-cancerous” isn’t enough to warrant immediate surgical removal. The unwarranted, irreversible surgical removal of functioning genital or gonadal tissue is at the core of intersex politics today. Personal autonomy over one’s body is often removed from intersex people and informed consent, the permission granted only after all risks and benefits of a medical procedure have been provided, is still being challenged. Unlike Krissy’s diagnosis, readers should also be aware that decisions to normalize and eliminate physically noticeable traces of intersex traits are often made at birth, a time when gender identity hasn’t fully developed, and obtaining informed consent from an infant poses unique challenges.
Without giving away major plot points, Krissy’s decision whether or not to remove her testes will hit home for many intersex readers, their friends, and families. There are many factors involved when considering irreversible surgery, first of which being a person’s access to viable, comprehensive medical care.
In the novel, Krissy has access to specialists who don’t immediately push surgery. She’s provided specialized information pertaining to her individual biology and is recommended to support groups. Dr. Cheng, the specialist overseeing Krissy’s care, endorses sessions with a psychologist to guide successful emotional processing, a service my endocrinologist failed to suggest when I was sixteen.
That being said, there are parts in the book that were triggering. Teenage cruelty, fueled by ignorance, sexism, and prejudice, shows it ugly face one more than one occasion. After Krissy’s “secret” spreads like wildfire within her high school’s gossip channels, she is treated like a pariah, dumped by Sam, and forced off the school track team temporarily due to complaints by competitors that she has an unfair genetic advantage. There’s a precedence for blatant misrepresentations of intersex characters referenced in morsels of popular culture, from Freaks and Geeks to House. While incredibly difficult to stomach, calling out intersex-based bullying and discrimination initiates critical conversations within the minds of young readers. Begging questions like, have I ever made sexist, intersex-phobic jokes? How can I respect and accept my intersex classmates? What’s my invisible privilege as a non-intersex person? For more on the topic, I highly recommend Inter/Act’s informational pamphlet “What We Wish Our Peers Knew”, due to be published later this year.
One of NOTA’s assets is the seamless integration of medical terminology into palatable dialogue a fourteen year-old could easily comprehend. This was not an easy feat and it’s understandable that the nuances of each and every intersex variation out there were left out. For readers unfamiliar with intersex, I emphasize this: there is no universal intersex body or experience. Krissy’s story is representative of a fraction of intersex people with Complete Androgen Insensitivity Syndrome (CAIS), as well as intersex people, like me, who become aware of their body’s unique, atypical sexual or reproductive anatomy during adolescence. It’s my opinion that Gregorio illustrates credible, realistic scenarios throughout Krissy’s journey; not only as a character with CAIS, but as a multi-faceted teen trying to navigate the waters of adolescence to adulthood.
Like many readers before me, I transposed elements of my own struggle towards self-acceptance and bodily appreciation on the pages of None of the Above. I, too, questioned my gender identity after being told by an endocrinologist I had male chromosomes and, at times, wondered if I were genetically engineered to be a teenage boy named Alex. Of course, as NOTA emphasizes, gender identity is much more complicated than chromosomes, gonads, or genitals alone.
It’s my sincere hope that NOTA encourages YA authors to explore the limitations of the (constructed) sex binary. I hope more YA novels represent intersex identities within the context of non-science fiction writing, debunking myths and half truths about intersex in the process. I applaud Gregorio’s courageous move to step outside the norms of YA writing, joining the small canon of YA fiction addressing the historically neglected internal struggles of intersex teens. Thanks to NOTA, I might just be an YA fan after all.