COVER STORY

Stuck in the middle

Society has to go beyond binary definitions of gender to support intersex individuals

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Even six months after the birth of their first baby, Anju and Tahir did not know if they had a son or a daughter. Every single day had been traumatic for the parents who live in a joint family. They lived in a close-knit community in Delhi's Lajpat Nagar area, and were desperate for privacy and isolation. They avoided meeting people, including their dear ones for the fear of having to answer the dreadful question, “Is it a boy or a girl?” At the time of birth, the parents, much to their shock and disbelief, were informed that their baby was born with ambiguous genitalia. They were asked to wait for six months after which the doctors would ascertain which sex “had to be assigned”.

The stereotyping of the sexes has a huge psychological impact on the minds of individuals who are born intersex. This becomes more pronounced as they move through life from infancy to adolescence and later, adulthood.
As per the United Nations Human Rights Commission, intersex individuals are those who are born with sex characteristics that do not fit the typical definitions of male or female.
The problem is not in being born intersex, but the problem is with the society which could not see beyond the binary definitions of gender, stereotyping people either as male or female. - Dr Firuza Parikh, renowned gynecologist and IVF expert
Mostly, it is at the time of puberty that real issues begin to develop and become visible, especially when one's phenotype (physical makeup) is not compatible with one's genotype (genetic makeup).
With the parents' consent, the sex can be reassigned as that of a male or a female with the help of surgeries and medicines. - Dr Meera Luthra, paediatric surgeon
According to experts, intersex babies must be allowed to remain in their neutral status so that they may have the freedom to choose their sex by themselves at a later date.

For six months, the parents told everyone who asked that it was a girl. It was a period of anxiety, struggle and depression. What if she turns out to be a boy? Is she neither? Why did this happen to us? Why couldn't our baby just be a normal boy or a girl? Numerous such questions messed up their already troubled minds. The baby, born healthy at 3.2kg, was pink and chubby with lovely brown eyes, and was an absolute attention stealer. Anju kept her fully covered at all times and made sure she never left home. She changed diapers alone, away from prying eyes. As the baby neared the six-month milestone, the couple approached the Holy Family Hospital in Delhi for an answer.

After four hours of investigation, consultant and paediatric surgeon Dr Meera Luthra, offered the parents a choice—they could make the baby either a boy or a girl. To the parents, it was like a sex switch. They were aghast. The baby showed both male and female sexual traits—a detailed observation pointed out that there was a phallus, palpable testes and just one orifice, which clearly indicated that his phenotype was that of a male. Then, a chromosomal test indicated his karyotype to be 46XY, which further established that the baby was a male—genetically, too. However, further tests indicated the presence of a small vagina and a uterus. “Such babies in normal parlance are termed intersex babies and with the parents' consent, the sex can be reassigned as that of a male or a female with the help of surgeries and medicines,” says Luthra. “In the case of Anju's baby, we could either create an ideal-sized penis by way of surgery or we cold make her female genitals more pronounced. But, upon reaching adulthood, the chances of the baby being fertile are dim in either case. There are no ovaries, nor is there a high level of testosterone,” she says.

As He is: Daniel Mendonca, who chose not to undergo a surgery to be a female | Janak  Bhat As He is: Daniel Mendonca, who chose not to undergo a surgery to be a female | Janak Bhat

According to global estimates, Anju's baby represents one in 1,000 babies who are born intersex. In India, the numbers may even be higher, says Dr Paras Kothari, head of paediatrics department at Mumbai's Sion hospital. “I myself operate on one to two intersex babies per month,” says Kothari. “This condition is not limited to the less privileged, such babies come from well-off backgrounds, too. Essentially, it is the result of a hormonal malfunction which leads to ambiguous genitalia, and thereby, indeterminate gender.”

As per the United Nations Human Rights Commission, intersex individuals are those who are born with sex characteristics that do not fit the typical definitions of male or female. Typically, there are three ways by which a baby's or an individual's sex characteristics are determined: One, the physical appearance of the external genitalia—if it fits into the typical male or female type; two, by the number and type of chromosomes—46XX in terms of females and 46XY in terms of males; and three, by the presence of hormones—whether the baby has ovaries or testes and resultant hormones (testosterone or oestrogen). Now, in the case of an intersex baby, one or two of these determinants may not fall in the typically binary mould of a normal male or female baby. For instance, chromosomal females (XX) with an overproduction of androgens in the womb will develop overly large penis-like clitorises, and maybe other typical male features such as facial hair, for instance. Likewise, chromosomal males (XY) who are insensitive to androgens (male hormones) may be born with tiny penises or even vaginas. Globally, the condition is referred to as Disorders of Sexual Differentiation (DSD)—which includes a number of intersex variations which are undiagnosed at birth, and often unreported, even if diagnosed.

Take, for instance, the case of 18-year-old Kamal from Hisar in Haryana, who was born intersex, and was brought up as a girl till the age of 15, when the family finally realised that he was a boy all along. At birth, Kamal's gonads remained hidden and the urethra was located towards the end of the penis, making it seem more like the genetalia of a female. “We sensed something was wrong by the age of 15, when he did not develop breasts and would complain of acute pain during urination,” says Kamal's father, 43-year-old Dara Singh, who works with the Haryana state police. “Upon investigation, it was found that he actually had palpable testes and was chromosomally XY. He then underwent four major surgeries to transform into a man.”

Singh has three children—two daughters and now, a son. Kamal says it did come across as a shock initially. All throughout his childhood and adolescence, he had behaved like a girl. “It was not easy at all,” he said. “But, I used to always feel boyish, somehow. My voice was like that of a boy, and I was more attuned to making friends with boys than girls. So, at times, I used to wonder if I was really a girl.”

In Haryana, where the society is patriarchal, he gained acceptance much sooner than expected. “I did not have to feel too embarrassed,” says Kamal. “I am sure if it had been the other way round, it would have been disastrous.” Now, Kamal has to take hormonal injections daily to develop secondary sex characteristics such as the moustache and beard.

Aberrant human chromosomes Aberrant human chromosomes

Dr Firuza Parikh, renowned gynecologist and In Vitro Fertilisation (IVF) expert at Jaslok Hospital, Mumbai, says the problem is not in being born intersex, but the problem is with the society which could not see beyond the binary definitions of gender, stereotyping people either as male or female. “The moment a baby is delivered, if the doctor notices that the baby's sex organs are indeterminant, he immediately senses a plethora of problems,” says Parikh. “First and foremost, what will he or she tell the parent? That becomes a hugely difficult task. It is a social emergency for us as we need to declare the sex of the child on the birth certificate. Especially, if the child is born pre-term at seven months, then the genitalia is extremely underdeveloped and disclosing the sex to parents and their families becomes an impossible task.”

Parikh says most of the time the parents were not ready to accept a baby born with genitals that did not clearly resemble that of either a male or a female. This is exactly why a baby was left abandoned in the cradle of the Holy Family Orphanage in Delhi. The next day, it was found that the baby was intersex with ambiguous external genitalia, and was put up for adoption. “We counsel parents on the day of the baby's birth and for days after that,” says Dr Fazal Nabi, a senior paediatric surgeon. “We ask them to come back in a few months with the hormonal and genetic tests, so that we can take a better look at how the baby is developing and then decide.”

Mostly, it is at the time of puberty that real issues begin to develop and become visible, especially when one's phenotype (physical makeup) is not compatible with one's genotype (genetic makeup). “We sometimes advise parents that it is easier to raise a child as a female because it is easy to create a vagina, but difficult to create a penis,” says Nabi. “Penile reconstructive surgeries are difficult, and even if it is done, erection is very difficult because of the implants. In either case, the individual will be infertile because all the sexual organs of either type are absent. So, in the Indian societal context we tell them that a single, infertile male is scarier than a single infertile female.”

The stereotyping of the sexes has a huge psychological impact on the minds of individuals who are born intersex. This becomes more pronounced as they move through life from infancy to adolescence and later, adulthood. Even today, as Vinay Gopal (name changed), who was born intersex, thinks of his days from his college, his eyes well up. “I have always been bullied throughout my school and college days,” he says. “And, that was because I did not exactly fit into the mould of a typical male or female. I was ridiculed at every step; a professor once asked me what kind of reproductive organs you have, and I asked should I open my zip and show you? Students from other departments would post humiliating pictures of me on Facebook; make weird sounds whenever I would cross the college chapel; call me by derogatory names whenever I passed by them. I felt like committing suicide and attempted it thrice, the first time being at the age of nine,” he adds.

Key players: Normal human chromosomes. Key players: Normal human chromosomes.

Gopal remembers spending days controlling his urge to urinate, and would relieve himself only at home after a long and grueling wait of over seven to eight hours—the time he would be in college.

Gopal was born with Klinefelter Syndrome (KS), a genetic disorder and one of the most common intersex variations. Unlike a normal male who is born with an XY chromosome, a Klinefelter male is born with an extra X chromosome (XXY). The extra X chromosome keeps the male from developing fully, while bringing in a few elements of female sexuality. So, a typical Klinefelter male may have larger breasts than normal, less facial and body hair, small penis, low testosterone levels and infertility issues. The impact of this condition is seen only after puberty. According to Sampoorna, a network of trans and intersex Indians across the globe, about 1 in 500 live births of male babies reportedly have this variation. “I always used to wonder why I was not fitting into a male or female stereotype and why I was in between,” said Gopal. “My voice was different from that of boys of my age, it was more feminine. I did not like hard physical activities, and I was more comfortable around girls. Because of all this, my mental trauma was severe. Also, by age nine, I used to wear my shirt as if I was trying to cover my chest. I have been conscious of my body all along.”

Gopal was raised by his grandmother as a girl for the first three years of his life because the midwife who delivered him, judged him as a girl. “But then my grandmother felt that something was not right and raised me as a boy,” he said. “Thank god, she did not get any surgery done on me. But, I never felt completely like a boy or a girl, and that made it all the more horrible because I could not get into a conventional relationship, although I have been sexually attracted to men,” says the 28-year-old student of religion, philosophy and sociology. He now works for the rights of intersex individuals and identifies himself as gender queer, like many other intersex adults, who lead perfectly normal, healthy lives and undertake varied professions, notwithstanding their sexual makeup.

Tirtha (name changed) works as a sub-inspector with the state police in a south Indian state. She has a genetic disease that causes Non-Classical Congenital Adrenal Hyperplasia (NCAH), that affects the adrenal glands. Tirtha repeatedly requests anonymity saying that if her condition were to be known, she would lose her job. “Although we are absolutely normal people, the system only understands the binaries—typically male and typically female. There is no place for anyone who deviate from this definition even by a [small] margin,” she says.

Luthra says, in a woman with NCAH, the adrenal glands tend to be overgrown. “Her clitoris will become so enlarged so as to look more male than female,” she said. “She will also possess more masculine characteristics such as facial hair, excessive body hair, a deep voice, and will have irregular or absent menstruation, leading to problems of infertility.”

Dr Firuza Parikh Dr Firuza Parikh

Tirtha, says that she has always been a female and was raised as a female, but she would rather call herself gender queer. “When I want to have sex, I want to be a man,” she says. “And, at other times I feel beautiful like a woman. I associate myself both as a man as well as a woman, but I am not bisexual at all. I have sexual relationship with women only.” During childhood, she was like any other girl but the changes began to show once she turned 13. “I never menstruated and did not marry, so people thought I was weird,” said Tirtha. “I never wanted to be put into sexual silos. I am a free person and want people to respect me and my sexual orientation, even if it is different from what they think as normal. It is just the way I am made.”

An intersex person can choose any gender identity—male, female, trans or gender queer, says Nadja Nadika from Sampoorna. Intersex persons often face discrimination from families—many intersex newborns are given up for adoption. As they grow older, intersex persons may be bullied for their appearance, may develop deep social anxiety and depression. Unnecessary medical intervention—such as genital surgery—can create further trauma for the person, leaving a lifelong effect. Daniel Mendonca, who has been working as an activist in the community, says that the society must get its definitions right. “Intersex is a biological condition, sometimes genetic in nature,” explains Daniel, who was born intersex. “For those who care to know, trans is about how a person feels about his or her own gender. It is a state of mind. There is a difference between the two. Some intersex persons do identify as trans. However, not all intersex persons are transgender, nor are all transgender persons intersex.”

He also points out the flaw in the Indian abortion law that allows parents to abort a baby which is androgynous, meaning intersex. “They do not understand that there can be many abnormal combinations of chromosomes in a human body like XXY and XYY, which are different from the normal XX (female) and XY (male) chromosomes.”

Dr Meera Luthra Dr Meera Luthra

Daniel was born a conjoined twin (one body, two faces). While his physical appearance showed male characteristics, all the internal sexual organs resembled that of a female. He had the abnormal chromosome condition of XXY, with an extra X chromosome. “My mother once told me that the day I was born, the doctor told them that a eunuch has been born into their family,” says Daniel. In his denims and a casual tee, he looked like any other 25-year-old guy. His father abandoned him soon after he was born, and one of his aunts brought him up. “I was more feminine and enjoyed the company of girls,” he says. “Somehow, I appeared different, I think. Even when I did not want to show it, it could just be felt, you know, that I was not like others.”

His mother would not encourage Daniel to mingle around because “she was conscious of me”. Even in high school, Daniel says he faced physical, verbal and sexual abuse and was bullied most of the time. “I do not use a public toilet at all now. It is important for me to close the toilet door to be able to use it,” he adds.

When he was four, his father told him that he was a eunuch. At nine, he menstruated for the first time. He attempted suicide four times because of depression. Once he turned 15, he had the option of undergoing a surgery to be a female or to accept himself as he was. He chose the latter.

According to experts, intersex babies must be allowed to remain in their neutral status so that they may have the freedom to choose their sex by themselves at a later date. However, doctors contest this line of thought. “What if the baby is raised as a boy and later in his teens finds out that he is actually a girl? That will be blasphemous, especially in the Indian society,” says Parikh. But, everyone agrees that society at large must accept intersex individuals, just as it accepts other genders.

Athlete Santhi Soundarajan was not fortunate to experience the kind of empathy and consideration she hoped she would get. Santhi was made to give up her silver medal in the 800m race in the 2006 Asian Games because she failed a gender test. “It was the most bizarre thing they could say,” says Gopal. “In her, male characteristics tend to dominate, but she is inherently a female, and has won several international sporting events as a female athlete.”

Geeta Luthra, a senior lawyer practising in the Delhi High Court, once came across the case of an intersex woman, who was born with ambiguous genitalia or rather mixed genitalia. It was the first such case in India. Faizan Siddiqui's phenotype was that of a man, but the genotype was that of a woman, says Geeta. “Of course, she cannot bear children, but she took the necessary hormonal injections to look very much like a woman and cleared the examinations of the Border Security Force (BSF). Yet, the government did not give her a job, saying she was physically unfit. She cleared the written exam, but could not clear the medical as she was asked to appear before the BSF medical board. They failed her on the ground that she will not be able to have children as her reproductive organs were not normal.” Geeta filed a writ petition in the High Court and won the case and Siddiqui got the job.

Meanwhile, Anju and Tahir still await the doctor's verdict, while their friends and well-wishers continue to ask them the question, “Is it a boy or a girl?”

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