*Editor's Note: Some phrases in this article were corrected according to the suggestions from InterACT, in order to respect the language of intersex people.
Biology teacher Lora Lerner scans the dimly lit classroom, her eyes glossing over the students’ expressions. Some look bored, examining their hair tips or watching the clock. Others look uncomfortable, constantly shuffling around in their seat, an embarrassed smile plastered on their faces. And some look shocked, their eyes glued to the projector as they intently listen to the lecture.
It is mid-January, the period of time when Lerner’s students learn about genetics. Usually, the topic of the day revolves around a fundamental science concept, such as DNA replication or protein synthesis.
But today is different, for Lerner begins the lesson with an introduction to Santhi Soundarajan, an Indian athlete who won the silver medal in the women’s 800 meters race at the 2006 Asian Games held at Doha, Qatar. Lerner explains Soundararajan’s situation: how a sex screening test revealed hallmarks of atypical sexual characteristics, causing the Indian Olympic Association to strip the athlete of her medal and disbar her from further athletic competitions. She explains how Soundarajan returned to her impoverished village in South India, humiliated by her situation, and attempted suicide.
Lerner pauses, scans the room and proceeds on to the next slide. Displayed on the projector is a single word: intersex.
InterACT, an advocacy organization for intersex youth, defines intersex, or differences of sex development (DSD), as a “biologically/ physically not being strictly male or female sex.” While an intersex person may identify as a particular gender or express a certain sexual orientation, intersex only refers to the person’s biology or appearance. As both InterACT and Lerner state, biological sex does not determine one’s gender identity. Similarly, one’s assigned gender at birth is different from one’s gender identity.
Lerner makes a point of teaching her freshman biology classes the science behind individuals with intersex traits not only to abide by California State Standards, which require ninth grade health teachers to touch upon topics related to “fertilization, fetal development and childbirth” as well as “individual differences in growth and development, physical appearance, gender roles and sexual orientation,” but also to use intersex traits as a study case for genetics.
“[First], I talk about the obvious way to think about biological sex, [where] XX equals female and XY equals male, but we use this as an example to show that it’s not that simple,” Lerner said. “Because genes are the information to make [our] bodies, if you have instructions on the X chromosome to develop into a female and instructions on the Y chromosomes to become male, what happens if those chromosomes get jumbled up? The bottom line is, because there are so many things that have to happen, you can have almost an infinite assortment of [biological sex] outcomes.”
The bottom line is, because there are so many things that have to happen, you can have almost an infinite assortment of [biological sex] outcomes.
The diversity in chromosomal segregation and assortment, in addition to the complex interplay of genes, hormones and cell receptors, are what allow intersex traits to develop. In fact, at least one in 2,000 babies are born with ambiguous sex traits. For some, the trait is clear at birth, but others don’t discover that they’re intersex until puberty or later.
According to the ISNA, those who do discover their intersex trait early on in life are often faced with cultural and social discrimination, usually at the hands of medical professionals. In fact, since the 1910’s, medically unnecessary corrective surgeries have been performed on intersex infants in order to bind them under a two-gender classification system.
“Gender is a cultural concept, in that, we decide who we are,” Lerner said. “It is used to describe all the social concepts of what it means to be a man or a woman [based on] our conceptions of male behavior and female behavior. But, if we’re talking about people’s bodies, their genitals, then we’re going to use terms like biological sex — because it’s already there, already determined for you.”
Most experts in the field agree that sex comes in a spectrum; it is possible to be distinctly male, distinctly female or both at the same time. (This does not mean that one can have two sets of genitals, however. True hermaphroditism is not possible in humans.) Lerner makes note of this point, telling her students that biology is essentially the science of diversity. Each human body is different from the next, due to the large amount of biological variation that is present.
With this message, she concludes the lesson. As class ends, and the students, evidently overwhelmed by the information, try to piece everything together, some — the curious few — can’t help but wonder: is there more to being intersex beyond the physical difference, the apparent discrimination, and the never ending tribulations?
Intersex activist Jonathan Leggette still recalls his father’s words that cut through his childhood. “I didn’t raise no f******,” his father would say, often consumed by the drugs he abused.
“I didn’t raise no wimp.”
Growing up in Washington, Leggette never learned of his intersex trait as a child. His mother was no longer around, having died when Leggette was one, and his father wove in and out of his life from a young age.
Leggette describes his father as an abusive man, a man who often used derogatory terms to describe those that did not fit his definition of male or female and readily embraced the idea of binaries. Throughout his son’s childhood, he would remind Leggette to take his steroids, and constantly push for the doctors to remove his child’s breasts, a yearning Leggette merely thought was brought on by what he explained as a rigid, shallow character on his father’s behalf.
“Growing up, I tried to be the most masculine boy because I didn’t want to defy my dad who made it seem like I misrepresented him and all of his being, like all that I did fell back on him,” Leggette said. “[Once] I really started to solidify my thoughts, I realized that I don’t have to worry about what my father has to say, or what my family has to say. I’m just gonna live my life as a queer and intersex person.”
Leggette left his father in seventh grade and was homeless for the next five years, from couch to couch, friend to friend, sometimes on benches in Seattle. And once he turned 19, making his way to a doctor’s appointment about weight management, he unearthed the truth behind his body – one that his father never approved of.
After a few blood tests, all of which showed heightened levels of female sex hormones in his bloodstream, Legette realized that he had been an intersex individual all along. He was neither male nor female but somewhere on a long spectrum between the rigid binary walls.
More specifically, he had Partial Androgen Insensitivity Syndrome (PAIS), which, according to a report by the Human Rights Watch and InterACT, causes individuals to be born with XY chromosomes and genitalia that a surgeon does not consider male or female. For people with PAIS like Leggette, various characteristics that are typically male or typically female may develop after puberty, regardless of the XY chromosome makeup that has traditionally defined biological sex.
For decades, doctors have recommended a corrective surgery to newborns with PAIS, among other intersex traits, to make the child a binary sex, to correspond with a binary gender. The idea of consent becomes a tricky line, as parents typically decide that such surgeries will happen, but the child has to grow up with the irreversible repercussions — both physical and psychological. ISNA deems such surgery “unethical,” as they often serve only as cosmetic procedures, stigmatizing intersex traits.
To deepen his understanding of intersex traits, Leggette attended various doctor appointments, read all accessible literature on the topic and fiercely rummaged through his medical records. Little did he know how enlightening the endeavour would be, for Leggete made yet another hard-hitting discovery.
When he was a mere kindergartner, he had gotten a “corrective surgery” without his consent.
“[The doctors] had no reason to do what they did,” Leggette said. “When I read my medical records, it stated that they wanted to normalize my genitalia so I can live a typical male life and be able to go on and have a wife and possibly kids.”
It became clear to Leggette that his surgery had no real purpose other than to make him cosmetically aligned within the binary gender divisions — his health was not a priority, much less was his emotional well being.
Leggette felt various emotions all at once.
The term “intersex” had never crossed his mind. To him, it was nothing more than unknown territory, and to wake up one day knowing that he’d been denied this crucial information about his body, shocked Leggette.
“Everything just hit me at once,” Leggette said. “I went through a big time where I didn’t talk to anybody, it was rough, [I had to] accept it, move forward, and then really start doing research because everyone is taught there is only female and male sex there is no variation, there’s no middle ground, there’s nothing in between, and you are an abomination if you don’t have the typical male or female characteristics.”
After some time, and after a process of healing and rediscovery, Leggette was able to overcome the intense emotions that boggled his mind and weighed down his shoulders. Instead of living with insecurity, Leggette proudly claimed himself to be intersex, becoming an activist who speaks up for individuals like him, and against corrective surgeries which still threaten the intersex community daily.
Dr. Ilene Wong, a practicing adult urologist at West Chester County Hospital and board member of InterACT Advocates for Intersex Youth, recalls how briefly intersex had been covered in her time at medical school. An hour’s worth of lecture at most covered the entirety of the topic, defining intersex people under medical terms with no human touch to them.
“You’re never really taught how to care for the patient [or] care for them as a whole individual,” Wong said.
Wong realized this fact in her years of residency, when she participated in a surgery of gonadectomy on an intersex patient for the first and last time. While gonadectomy to remove dead streaks of gonads leaves no harm to the patient, removing functioning gonads puts patients on lifelong hormone replacement therapy. Doctors often recommend the surgery to intersex individuals in the latter case, despite it being medically unnecessary to “normalize” the sex.
Post-surgery, when she had talked to the patient, she entered a state of panic realizing she had little resources to offer, both physically and psychologically, due to her little knowledge about intersex individuals. It also became clear to her that her patient had not been informed of the entire surgical process and its effect. It was since then that she began her advocacy efforts for intersex people as a urologist, attending conferences across the nation and writing a young adult novel “None of the Above” to voice her support for the right to autonomy and consent.
Wong says that intersex people have been heavily medicalized, rather than being viewed as real human beings.
“There are many social issues that in many ways supersede the actual medical issue,” Wong said. “For a long time, intersex people have been invisible because [they] were in the shadows, because there has been a lot of shame and stigma associated with it. A large part of this is perpetuated by the medical community, who really medicalized intersex and made people feel like they were just subjects.”
While intersex individuals were subjected to dehumanizing photographs of their traits, as well as depersonalized terms in the past, only recently have doctors begun to humanize intersex individuals, according to Wong. One way was by realizing that no single doctor can treat an intersex child. Treating intersex individuals by nature involves a multidisciplinary approach, not just to examine the physical health of the patient, but making sure the patient and the family seeks psychological support.
To further protect human rights for intersex individuals, however, the Human Rights Watch and InterACT refute medically unnecessary surgeries that serve to normalize a child’s genitals. They state: “[A corrective surgery] sets up the false dichotomy of child autonomy versus giving the child a “normal” life — when there is no evidence that these surgeries deliver on that promise.”
The report states that assigning a gender on a child is largely “socio-cultural,” often informed by the wishes of both parents and doctors for a child to have a “normal” life. In many cases, doctors propose the surgery as an “urgent issue.” Not only is there no evidence that surgeries ensure this, but they also undermine intersex people’s autonomy over their own body. In fact, depending on the trait, there is up to a 40 percent chance that intersex children will grow up to reject their irrevocable, surgically assigned sex.
According to the report, the dynamic between the doctor and the parent of an intersex patient has continued to exempt intersex people from the discussion. While certain laws can be interpreted to prevent parents from wanting medically unnecessary surgeries on their children, corrective surgeries have still persisted under parental push. In other cases, doctors often recommend corrective surgeries as urgent, despite it being medically unnecessary, leaving the family in the dark regarding intersex traits.
Beyond psychological harms onto the patients, common cosmetic surgeries leave permanent damages on the body of the intersex individual. Such operations include: clitoral reduction surgeries (reducing the size of clitoris, which can induce “pain, nerve damage and scarring”) and gonadectomies (removal of gonads, which creates dependency on lifelong hormone replacement therapy).
According to Wong, proponents of corrective surgeries state that patients who have received corrective surgeries report back with positive feedback. However, Wong states that their sample excludes intersex people who have not had corrective surgeries and have “happy and healthy” lives. Furthermore, research shows that 80 percent of the patients who underwent the surgeries are lost on follow up, leaving no conclusive data for the supporters of corrective surgery. In fact, Wong has encountered multiple victims of such corrective surgeries herself, reaffirming the harms of corrective surgeries.
“I’ve met dozens of intersex patients who are avoiding doctors like a plague because of their experience [with doctors,]” Wong said
While the case stands that medically unnecessary surgeries leave irreversible harm on intersex individuals, Wong agrees that differentiating between when the surgery is necessary or not is a difficult choice doctors often face.
“In the case of intersex…[one form of genitalia] might be considered normal to some people, but you don’t know which way of abnormality it is,” Wong said. “If a child is born and you can’t tell, but you can sort of predict where they are, what’s the cutoff? if there’s a 10% chance that you can get it wrong is that okay? But if it’s a 30% chance?”
As such, recommendations differ from doctor to doctor, creating a gray area of the “correct treatment” for intersex patients.
“In surgery, there’s often this sort of maxim that you can convince anyone to do a surgery if you just use the right levers,” Wong said. “And it’s challenging, it’s difficult, as a doctor wanting to know what the right thing to do is. It is a challenging thing for some people to say they don’t know what the right thing to do is.”
From the moment of birth, intersex children are cast as outliers, their ambiguous traits often inciting fears and worries among family members. While a non-intersex child’s birth is accompanied with rounds of laughter and congratulations, an intersex child’s birth is followed by tears. And shame on the family’s part, as they often believe that their child will grow up to be an unloveable oddity bound to live alone on the fringes of society. Fear, because they do not know what’s to come next, if their children will be safe and secure, if they’ll cope with life experiences the same way others do.
No one knows this better than intersex activist Emily Brehob. Born with Swyer syndrome on Nov. 3, 1992, Brehob carries XY chromosomes, the typical genetic makeup of the male sex, but looks outwardly female. Instead of possessing fully developed sex organs such as the testes or ovaries, she possesses undifferentiated streak gonads that can neither produce sex hormones, such as estrogen and androgen, nor initiate the development of secondary sexual characteristics.
“I’m really lucky that I have an intersex condition where there are some internal differences in hormones and chromosomes, but I look like a typical female,” Brehob said. “Still, I was put on estrogen and progesterone when I hit puberty, so there [was] an expectation that I should fit the typical gender roles of a woman.”
Indeed, these societal norms of what it means to be a man or a woman plagued Brehob’s life, becoming especially influential as she grew up and transitioned into adulthood. During this time, a whirlwind of questions raged in Brehob’s head: Am I normal, am I fitting in, is everything alright with me — all examples of typical teen behavior. Yet she also found herself grappling with problems beyond the usual zits and mood swings, and the sex ed curriculum from high school didn’t help.
“My high school sex ed was better than others, in that, we talked about one or two intersex conditions,” Brehob said. “Although that is more than what most people get, we didn’t use the word intersex. We didn’t talk about many intersex conditions or how intersex people go through puberty, so I didn’t learn much about myself.”
For Brehob, the topics covered in sex ed were inapplicable to her sexual development, or the lack thereof. She discovered that in non-intersex females, the hormone estrogen works alongside progesterone to thicken the lining of the uterus, enlarge breasts and regulate the monthly menstruation cycle. But for individuals like her, who would otherwise evade the typical biological markers of female sexual development, these hormones had to be artificially inserted.
So, throughout the entirety of adolescence, Brehob found herself making periodic visits to a specialist clinic in Dearborn, Michigan, where she was put on hormone replacement therapy. Yet even then, even though her doctors repeatedly assured her that she’d undergo puberty like everyone else, Brehob was hesitant and doubtful, afraid of what awaited her on the other side.
“When most kids go through puberty, they have examples of what is going to happen, about what that’s gonna look like,” Brehob said. “But I had never met anyone with my condition back then so I — not that I didn’t believe my doctors — but I just couldn’t picture it.”
This uncertainty, along with the added pressures of woman and adulthood, breathed down Brehob’s neck, hounding her, making her feel as though she was weird in some form or another and finally convincing her to keep her intersex trait a secret ー at least from the majority of the population.
“I only told some of my close friends that I was intersex,” Brehob said. “When I went to summer camp, I often would tell my cabin because I felt like if they don’t react well, I’m never going to see them again anyway so it’s no big deal. But I would tell only my closest friends, and they were usually really accepting afterwards.”
Although immensely grateful that she was accepted and cared for by her loved ones, and that she had the necessary finances to receive adequate health care — two things many intersex individuals don’t have — Brehob nevertheless spent much of her young adult years feeling detached and slightly isolated.
After years of bullying, both at home and at school, Leggette felt the same way — secluded. Unlike his male-identifying peers, he grew breasts in middle school and never sprouted hair on his legs. He experienced sudden growth, but his voice never dropped three tones lower. Leggette was different, and for that, his classmates harassed him, saying that he had the “biggest boobs in middle school” and that his thighs were far too thick.
Though Leggette sauntered on with his life, paying no attention to the bullies who yelled at him across the room, the period of adolescence left him more confused than ever. He did not know what to make of his atypical physical characteristics, and he had no one to relate with, no one he could reach out to for help.
Encounters with the medical community didn’t help either. Finding an intersex specialist, who neither posed inappropriate questions at the patient nor was uneducated about the science behind DSD, was a challenge for both Brehob and Leggette.
In fact, Brehob recalls that a few years ago, a doctor at the hospital asked her: “Do you have a uterus? Do you get periods? What is your hormone replacement regimen?” Her medical records explained everything, but the doctor sought professional explanation from Brehob herself. With each question, her frustration escalated.
Such feelings only worsen when Brehob faces the “check M if you’re male or check F if you’re female” papers, as she identifies as non-binary, feeling neither male nor female.
“I am biologically different in a way that’s going to affect the kind of medical care I need, and not being able to make that clear on the intake form makes me feel like, they’re not going to know something about me that they need to know to give me good care,” Brehob said.
For this reason, Leggette and Brehob turn towards trans-friendly doctors for medical aid. Though the two agree that they are not the ideal resources, these doctors are at least knowledgeable about gender fluidity, which holds some connection to intersex traits. But even with trans-friendly doctors, Leggette says, finding the right one is trial-and-error.
“Some doctors don’t even know what intersex is,” Leggette said. “Some doctors just know that there’s a paragraph in their medical books about the condition.”
Leggette believes that this is one of the root causes of the stigma around intersex. He believes that people are often so caught up in the medicalized information surrounding intersex traits that they forget that underneath the genetic makeup, the hormones, the chromosomes — there is a living, breathing human, too.
Arlene Baratz is a breast radiologist at the Allegheny Health Network, an intersex activist as a board member of InterACT and a Medical and Research Affairs Coordinator at the AIS-DSD support group. For years, she’s worked in the field of healthcare, representing intersex families at medical centers.
Baratz herself comes from a family where the term ‘intersex’ is far from foreign. As a mother of three children, two of whom are intersex women diagnosed with complete androgen insensitivity syndrome (CAIS), she attempts to provide support to parents, who are often isolated when it comes to these matters.
Baratz can empathize with their emotions, as she experienced them too in the year 1990. She recalls feeling devastated when her older daughter’s surgery for a hernia inadvertently led to the discovery of testes.
Her daughter’s diagnose put Baratz in a strange position. Suddenly, she had become a loving mother of an intersex child, yet in the back of her mind sat a memory from the year 1980 when she was completing her medical residency. She was given one lecture on intersex individuals. According to Baratz, the message of that lesson, whether stated directly or not, was simple: intersex traits are disgusting
“We were shown pictures of naked [intersex] women with their arms outstretched and bars over their eyes,” Baratz said. “They were very depersonalized and medicalized, and it was generally portrayed as freaky, undesirable, not something you’d want to tell people about.”
Baratz and her children, however, were fortunate enough to have doctors who offered genuine support and acceptance. From the pediatric surgeon who discovered the intersex trait and explained in a kind, gentle manner to the endocrinologist working at University of Pittsburgh Children’s Hospital who offered words of encouragement, no one ever suggested corrective surgery. Instead, they advised Baratz to consider hormones when her daughters reached puberty.
Nonetheless, certain moments were hard for Baratz as a mother, just as they were for her children. Puberty, in particular, was a stressful time for the Baratz family. There were times when Baratz didn’t know what to say. While she made it a point to instill healthy ideas about self-esteem and confidence in her daughters, she often wondered if she was supporting her daughters to the best of her abilities.
When her daughters asked about menstruation, Baratz would calmly answer their questions, saying: yes, some girls do menstruate, but others don’t and that’s normal. When her daughters began to panic about being asked if they had gotten their periods or if they had any tampons with them, Baratz made sure they knew what to say, either “Not yet” or “The girls in my family get their periods a little late.”
Yet, when it came to her own well-being and mental health, Baratz often put them on hold. There were few support groups available to her at the time, just as there are few support groups available to parents now, according to the Human Rights Watch and InterACT.
“I really wanted to talk to people about it — parents who had actually gone through all this, because it’s one thing to tell your daughters ‘you will get through this, you’re a wonderful person, someone will really love you and you’re very special,’ but there are other things I just couldn’t teach [my daughters],” Baratz said. “I was desperate to have someone to talk to about it, which again gave me a sense of shame because none of the doctors had such resources available at the time.”
For a long time, Baratz and her husband did what they thought best for her children, without any outside help to guide them. It wasn’t until she reached out to her endocrinologist that Baratz was referred to an intersex support group.
From then on, questions Baratz had been asking herself for years were answered.
For Baratz, Leggette and Brehob, support groups serve as a sort of safe haven.
Baratz began to attend meetings for families with intersex children. It was reassuring to hear other parents experiencing similar difficulties that she had lived through; at once her feelings of insecurity and the worry that she might be doing something wrong, decreased. There, she met pediatric endocrinologist, Charmian Quigley, whose expertise regarding intersex traits gave Baratz a sense of comfort.
Eventually, when worried parents came in seeking the same answers she had once pondered, Baratz was also able to provide information.
Brehob, in a similar manner, reached out to InterACT, where she was able to meet and connect with another intersex person for the first time at the age of 21. Alongside fellow intersex activist, Pidgeon Pagonis, she gave a talk at Louis Children’s Hospital, advocating for intersex rights.
“I told [Pidgeon Pagonis] the name of my condition, and as soon as I said it, they [understood],” Brehob said. “I felt like the conversation just flowed very easily. Like there were all these things I couldn’t talk about that I was suddenly able to talk about with someone.”
Leggette has a similar experience. After discovering he was intersex, he reached out to InterACT with an application to work for the organization, and three weeks later, he was accepted. He then went on to meet InterACT board member, Emily Quinn, while traveling to Philadelphia for a conference. There, he met various intersex people for the first time.
“You feel like family the minute you meet,” Leggette said. “Even though we had just met, there hasn’t been anyone I’ve been able to relate to on that level, and we created change and it just happened organically. I didn’t do anything. I didn’t go out of my way to explain myself because these people just got it and it was wild.”
Brehob and Leggette have different stories, yet they both found solace in finding spaces where they were fundamentally understood without a need for excessive explanation. For them, understanding that they weren’t alone was important and crucial to their process of self-discovery.
Human bodies don’t all fit the binary system of male and female. The fact is straightforward, backed by science and sociology, but breaking the silence, dismantling the taboo and casting off the shame is not. As Baratz states, the silence can be overwhelming, affecting both the intersex individual and his or her family.
Yet the pieces to make change happen, to bring about a discussion of intersex rights, are beginning to come together. The movement is led by a wide assortment of individuals — activists, families, well-informed doctors, lawyers and legislators, who, despite their differences in race, gender and sexuality, are united in their goal to raise awareness of intersex issues.
For Leggette, who’s forced to deal with the effects of his non-consensual medical surgery every day, educating others, speaking with fellow intersex community members, students and staff on college campuses and attending talk shows and conferences, are ways for him to put his difficult past to good use.
“I’m showing people that I care,” Leggette said. “But I am also showing that others can do this too: there’s room for people like me in this room, there’s room for intersex people to be on top of things, to be in leadership roles.”
Through his advocacy efforts, Leggette aims to increase public knowledge of the intersex community. He seeks to humanize and de-medicalize members of the intersex community, to show society that medical surgeries performed on intersex infants are akin to female genital mutilation, that intersex people are deserving of human rights, for they are, after all, humans.
Similarly, Baratz, as a medical advisor to the Androgen Insensitivity Support Group and InterACT, as well as a contributor on the Handbook for Parents and the Clinical Guidelines, a publication that outlines guidelines for both families and healthcare providers, utilizes research to highlight intersex issues.
She focuses on educational outreach due to a lack of knowledge around DSD. In fact, when her older daughter was diagnosed with CAIS, Baratz spent much of her time scouring through medical literature. She found that while there was an abundant amount of information about breast cancer and its possible links to DSD, very few reports actually explained the science behind intersex and its possible effects on individuals.
In addition, Baratz discovered that the research papers often disagreed with one another, and that the citations didn’t match up with the facts of the report. This, in combination with the stigma and secrecy that often makes intersex traits a taboo topic to discuss, is why Baratz now works with clinicians to conduct community-based participatory research.
“We need to interview families, doctors, all kinds of people to really understand intersex,” Baratz said. “I think one of the areas that needs to be looked into is where these biases comes from, and that’s what underlines the push to do this surgery on young children.”
For Brehob as well, her advocacy efforts revolve around sex education, with particular emphasis on intersex traits. As part of InterACT, she reaches out to medical students, doctors and educators, offering to give a speech on intersex issues. She also works with journalists, providing them with feedback on their statements and writing. She does this so that intersex individuals, no matter how broken or lonely they may feel, have at least some representation and correct portrayal in society.
After all, Brehob points out, many sex ed programs in high school are so homogenous that even the more prominent parts of the LGBT community, such as gays and lesbians, are discarded. According to her, they are left alone with no resources or aide to help sort out their emotions — similar to the plight of intersex individuals.
Lerner recognizes this, the fact that Sex-Ed in high school — and even the reproductive curriculum in medical school — usually skims over the concepts of biological and cultural diversity. Taking it upon herself to highlight these topics, Lerner touches upon the subject of variation throughout the year, using science to teach her students that there is no such thing as normal and that almost all biological traits fall on a spectrum.
She uses sex and gender as prime examples of this phenomenon, hoping that her students will grasp the social applications of these terms and be open-minded to all individuals, intersex or not.
“Just because things are uncomfortable doesn’t mean we shouldn’t try to understand them and make things a little bit better, right?” Lerner said. “So is everyone comfortable with [the topic of intersex]? No, probably not. But I think that makes it all the more better to teach because we truly get comfortable as we talk about it, learn about it and evolve our thinking as human beings.”
Sophomore Tajin Syed, who had biology with Lerner during freshman year, feels that Lerner has succeeded in her goal, and that, in her own way, she is advocating for intersex rights by simply teaching the material objectively and scientifically.
“[In the beginning of the class], Lerner gave us a list of different types of genders and sexualies, [and] that really opened my eyes,” Syed said. “The way Lerner [taught] it is that biology has so much diversity, so instead of putting up standards and normalizing everything, we should accept the variation.”
*Editor’s Note: The story has been modified to clarify terminology regarding intersex people in India. While the story explains one belief on intersex, it is to be noted that intersex is an identity, not a pathology as it had been in the past.
Rajkumari Kinner belongs to a subset of the intersex international community, and as an Indian native, her experience of coming to terms with her intersex identity differed from other intersex individuals’ journeys.
Born in the year of 1952, Kinner was ostracized by those around her. Her parents, heartbroken to discover their child was intersex were not given the opportunity to hold their baby or collect their thoughts. As inhabitants of the conservative city of Sahatwar, where news of a birth or marriage proposal bounced from one household to the next faster than the speed of light, the midwives immediately instructed Kinner’s parents to keep their child a secret and to dispose of her as soon as possible.
Having had no time to come to terms with the magnitude of their situation and make a rational decision, the couple was hesitant, but when the time came and they could no longer tolerate the societal pressures imposed on them, the parents knitted their resolve and committed what is considered by many to be one of the most vile acts of humanity: abandoning the newborn.
Unable to call for help, Kinner stayed by herself along the banks of the Ganges river until Rurki Pasma, a member of the hijra community (consisting of both intersex and trans-women), took her in her arms and carried her off to a desolate location that would soon become her home, her family and her very reason for existence.
“I consider my father to be my late guruji, Rurki Pasma,” Kinner said. “And the rest of my family [consists of] my four girls, one boy and a few young babies, all of whom I took under my care after they were abandoned by their parents for being born intersex. My biological parents, I don’t even know them. Nobody here knows and nobody cares to know because we have only one home, and that is the hijra home, the hijra parent, the hijra family, the hijra temple.”
Time passed, people grew older, mindsets changed and soon Kinner learned to empathize with her biological parents. She learned to forgive them and learned to embrace their actions. Yet, unlike many other intersex individuals, Kinner never yearned to accurately determine her medical condition. To this day, she believes it to be an unnecessary waste of time, something that would only pillage her mind after delving into the science behind her identity. Rather, Kinner proposes that being intersex has little to do with biology, and more so to do with a service to society.
She arrives at this conclusion by drawing inspiration from the ideologies scribed in the Hindu epic, Mahabharata, of which the intersex, or Indian hijra, community are devout believers of. Written nearly 5,155 years ago, the narrative contains philosophical and devotional material, such as the discussion of the four goals of life. More importantly, however, it encompasses the rich tale of Shikhandi, an individual who is revered by hijra communities as the Almighty, the one who represents the unification of both female and male traits, and whom Kinner credits as the sole driver of the hijra philosophy.
“From the beginning of time, from the Mahabharata, from the rebirth of our god, Sikhandi, to the details contained in the love-book, Kama Sutra, it has become [the intersex people’s] destiny to serve as symbols as happiness, to not chase materialistic things,” Kinner said. “To serve humanity even if it doesn’t serve you — it is what Sikhandi teaches us to do.”
For Kinner, to be intersex means to abide by Shikhandi’s teachings and serve humanity. It does not matter if one has Klinefelter’s syndrome and the other has androgen insensitivity syndrome — what matters is that if an individual is born with ambiguous traits and does not fit the typical mold of male and female categories, then they are obliged to devote themself to a life of tradition and religion.
So on that day, sometime in the cold month of January, when students like Syed departed their biology class with only one question on their minds — what does it mean to be intersex — most people could not find an answer. For a large majority of them, it was the first time they had ever heard the term at all. The first time they had seen a video of self-identified intersex individuals freely talk about their experiences. The first time they realized that the medical community, despite their adage “Above all do no harm,” can indeed inflict pain upon their patients.
It was a day of firsts.
But for Leggette, who spends much of his time working on intersex advocacy, to be intersex is actually quite simple. It means being a human being. A person, who, no matter what others might say, is in his eyes, beautiful and powerful. A person who should embrace their identity as an intersex individual, who should never let the difficulties and the obstacles shove them off-track and who should recognize for themselves that no intersex man or woman needs to be fixed.
“We don’t need to be fixed; we are fine the way we are,” Leggette said. “There’s no reason. There’s nothing to fix. We’re just different. There’s variations of everything and just because we don’t fit your expectation or don’t follow the binary you want us to uphold so bad, you have no reason to fix us.”
For Brehob, being intersex means going through a wide variety of trials throughout childhood, adolescence and adulthood to finally realize that every biological trait is normal — and that intersex people, like herself, are normal.
“I just want people to try and understand that we’re not medical anomalies,” Brehob said. “And to doctors, it’s a great thing that you’re dedicating your life to medicine, but please talk to patients who’ve had these interventions to see how they feel. Don’t panic.”
And for Baratz, having an intersex child is not a tragedy. Yes, she admits, it will be difficult to come to terms with the child’s trait. Yes, it will be difficult to explain to family members. And yes, it will be some of the hardest times of a parent’s life.
But Baratz wants to clarify that intersex children have very few limitations in terms of what they can and cannot do. With love, nurture and proper care, Baratz sees no reason why they cannot go on to lead successful lives, just like her daughters have been able to do.
“Being intersex is actually very common even though people don’t talk about it often,” Baratz said. “But both parents and intersex people should realize that it is something that you can live with. It is possible to grow up and have wonderful and fulfilling lives without changing yourself. It really is.”