Notes from the margins..

An expensive suite in an iconic seven-star hotel in South Mumbai is abuzz with activity. Anticipation and perfume mix in a thick cloud in the room outside where big names from the real estate industry, corporate heads and a film financier with his wife, pallu drawn over her head, wait eagerly for darshan. Inside the room is Jyoti Ma, the intersex person they have queued to seek blessings from. Ze is dressed in turquoise blue pajamas and a white kurta.

Shoulder-length curls frame zir face, coloured with dark lipstick, kohl-lined eyes and make-up. The visitors ask zir questions to which there are brief hushed answers, but mostly, just smiles. The main devotee coordinating the darshan is worth crores. "Earlier, a few of us would go to Benares for darshan, but now she makes an annual trip to Mumbai," he says. "Everybody contributes to fly her down and host her for 2-3 days. We have to restrict the number of visitors though. At the darshan, each of us makes an offering according to our capacity."

Apart from being born with both genitalia, in Jyoti's own words what makes the person special is being born under a special constellation. "My guruma who raised me knew this and began asking my opinion to people's questions when I was barely 10. Sometimes I wouldn't even understand the question and would instinctively respond. This helped many, and my fame grew. When not away on pilgrimage, people still flock in large numbers to my Benares home for darshan," she says. Money, silk saris and jewellery offerings are placed in front of the Goddess Bahuchara Mata at an altar set up in the corner of the room. "I worship her and Lord Shiva in his ardhanarishwar form."

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Over 35km away, equal rights activist Harish Iyer scoffs at attempts to either deify or heap scorn on individuals born intersex. "Just like being a straight man or woman or gay or lesbian by itself is not a bane or a boon, so is being intersex," he says. "Practices like these put these individuals in a box and reinforce their difference from the 'normal.' In the long run, that does little by way of both integration or taking away the otherisation." Many sections of society confuse between the transgendered, hijras and intersex individuals, according to Iyer. "Nothing can be further from the truth." He admits though that the intersex community faces its own set of problems. "Activists working with marginalised communities whether LGBTQ or otherwise need to remember this and address these with sensitivity."

Gopi Shankar Madurai, equal rights and indigenous rights activist, who in 2016 became one of the youngest, and the first openly intersex and gender-queer candidates to contest assembly polls in Tamil Nadu, feels the problem arises when as a society we grapple with something new. "We quickly try to homogenise that which we don't want to understand or which we fail to understand. That is one of the biggest problems of Indian society," he says. "In a sense, it is like modern Hinduism where community, sectarian and regional identities are sought to be subsumed in a homogeneity. With the intersex community too, we see society trying to do the same. Legislators who bring bills dealing with our rights and issues also come with a baggage of similar misinformation and continue the damage. Gender identity, sexual orientation, sex identity are different. Any attempt to conflate these has severe repercussions for marginalised groups like the intersex community within the larger LGBTQIA community. Given how we have 50 plus gender identities and more than 15 sexual orientations, we need to educate children at a very young age about their own bodies before they start looking at the world map to figure out where they are."

Madurai points out that the medical fraternity is the first to marginalise intersex individuals. "The infantilisation by constantly focusing on infants or very young children who can't speak for themselves and whose gender constitutes a medical emergency is the first thing one comes across in the approach of the medical fraternity." Ze points out how erasure is done with pathologising medical terminology. "A parent with an intersex infant is told the child has a Disorder of Sexual Development (DSD). The entire discussion then follows a top-down approach framed in the context of a deformity, or worse, an abnormality. Parents are then given the option of surgical correction and erasure.

Intersex is touted as a disorder, a pathology and newborns are labelled 'disordered' males and females rather than acceptably normal, healthy and fully intact. If this isn't a classic example of cisgendered prejudice, I don't know what is," says a livid Madurai. "Beyond that, the medical criteria used for 'success' in surgery on children with DSD is based on how their genitals will measure up for heterosexual penetration."

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Paediatric and adolescent endocrinologist Dr Abhishek Kulkarni, an honorary consultant with Mumbai's Jaslok and Hinduja hospitals, says, "Though we still have a long way to go particularly in rural and small-town India, sensitivities are growing rapidly in the metro cities, where most patients are referred by smaller hospitals." Apart from having sex chromosomes, sex hormones and sexual anatomy different than those we largely know, there is no need for intersex persons to be treated differently from others, he says. "There are more than 50 medically identified conditions that may make a person intersex because of variation in the human biological makeup."

No sooner than a baby is conceived, its sexual development starts. Chromosomes and genes, which help form the baby's testes, develop. These release male sex hormones that masculinise the brain. So both the genitals and the brain are influenced separately. "Any variation at any point of this development can't be controlled," points out Dr Kulkarni. "In some instances, there are no receptors in the brain for male hormones and the baby has male body parts but a feminine brain. Sometimes a baby can have male looking genitals and still be female. Or in extremely rare instances, an intersex baby can have both the ovary and the testes regardless of their ability to function.

Such intersex babies with ovotestes were considered to be true hermaphrodites, a word we now deem offensive." According to him, not all intersex traits are visible at birth. "Unlike babies born with ambiguous genitals or internal organs (testes and ovaries), one must countenance those who become aware they're intersex only after genetic testing at a later age because it does not show up in their phenotype."

Kolkata-based social psychologist Meghna Kashyap echoes Dr Kulkarni on the nomenclature used for intersex persons. "It is not only semantics in this case, but the language also reeks of severe prejudice and discrimination.

One could use the word hermaphrodite to talk about an invertebrate like the earthworm since it is a species with both sexes during the course of its typical life pattern. But in the case of human beings, where we have distinct sexes, which stay the same in a typical lifespan, it is obviously derogatory to call them hermaphrodites." According to Kashyap, language is finding ways of keeping abreast with political correctness when it comes to speaking of the intersex. "Instead of pronouns like s/he, we use ze and instead of her/his, we say zer," she says.

She also empathises with the feeling of being wronged among the intersex community. "The psycho-social and socio-cultural do not figure in the larger narrative, which doesn't go beyond the medico-legal. Look at the UN Office of the High Commissioner for Human Rights, which says that intersex people are born with any of the several variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that, 'do not fit the typical definitions for male or female bodies.' And this is a world body on human rights!"

Assigned gender

What is referred to as intersex and medically referred to as Disorder of Sexual Development (DSD) affects one in 25,000 people. "If the newborn has to be medically assigned a gender soon after birth, doctors generally look for the best quality of life, gender identity issues, fertility issues post-puberty and also the choice of parents. If the child is chromosomally xx then we suggest she is raised as a girl and if it is if xy, then as a boy," says paediatric and adolescent endocrinologist Dr Abhishek Kulkarni. "A urologist and geneticist work in tandem with the surgeon even if genital reconstruction is involved to see what is the best surgical feasibility." There are more than 50 medically identified conditions that may make a person intersex because of variation in the human biological make-up, he adds.

Understanding intersex

People whose characteristics are not either all typically male or all typically female at birth are intersex. They were previously referred to as hermaphrodites or congenital eunuchs. In Hinduism, Sangam literature uses the word pedi to refer to people born with an intersex condition.

Intersex is an umbrella term used to describe a wide range of natural bodily variations. In some cases, intersex traits are visible at birth while in others, they are not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all.

Surgeons pinpoint intersex babies as a "social emergency" when born. In many cultures, stigmatisation and discrimination from birth includes infanticide, abandonment and the stigmatisation of families.

Intersex Awareness Day is an internationally observed civil awareness day designed to highlight the challenges faced by intersex people, occurring annually on 26 October. It marks the first public demonstration by intersex people, which took place in Boston on October 26, 1996, outside a venue where the American Academy of Pediatrics was holding its annual conference.
Source: Wikipedia

More reading on LGBTQIA

The University of California, Davis has an online resource to understanding the LGBTQIA spectrum. It can be accessed at: https://lgbtqia.ucdavis.edu/index.html and has among other things a handy pronouns guide.
What are pronouns? Pronouns are linguistic tools that we use to refer to people (i.e. they/them/theirs, she/her/hers, he/him/his). We believe that it is important to give people the opportunity to state the pronoun that is correct to use when referring to them.
Example: Ze reminded zirself to pick up zir umbrella before going outside.