This article is the third in TNM’s ‘Access Denied’ series, which dives into the issues and needs of certain sections of society that are confined to the margins and denied access to the mainstream.
Sakthi SriMaya had only ever known life as a boy, until she got her first menstrual period in Class 9. “I was terrified,” she says. “I immediately informed my teachers and parents, who took me to various hospitals and doctors.” What followed for her was a horror story, featuring testosterone boosters and a surgery without her consent. “My parents wanted me to be a boy, so a surgery was performed on me. But I am a woman, I know that now. What was done to me was gender mutilation,” she says.
An intersex woman and co-founder of Intersex Human Rights India (IHRI), Maya says it took her a long time to realise she is an intersex person. There was a time when she thought she might be a gay man, she says. “Our society has gained at least a modicum of awareness about various genders and sexualities now, but most people are still oblivious to intersex variations. Even a majority of healthcare workers are not aware of the existence of intersex persons, or of intersex variations," she says.
An intersex person is someone with a range of biological features atypical of what are widely understood as male or female sex characteristics. These variations are congenital in nature, and may constitute differences in reproductive and sexual anatomy, hormones, or chromosomal variations among other factors. As per the United Nations for LGBTI equality, 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. According to experts, between 0.05% and 1.7% of the population is born with intersex traits,” says the UN manual. As of now, at least 30-40 intersex variations have been identified, and several others are still being added to the list. These variations, however, are not to be confused with a person’s gender identity (how a person defines their own gender), sexual orientation (a person’s attraction), or gender expression (how a person expresses their gender).
Right from childhood, intersex persons, especially those with visible variations, bear the brunt of the lack of awareness surrounding intersex identities. Vinodhan, a writer and Dalit intersex activist, says their parents always knew something was ‘different’ about their body, but they simply couldn’t figure out how to ‘fix it’. “My family thought I was a girl, and that I just happened to have puffed genitals with some extra growth, like an additional finger. When I was an infant, they tried to ‘correct this issue’ in their own traditional ways,” Vinodhan says.
Even after reaching Class 10, Vinodhan did not get their first period, which worried their family. “I was taken to many temples and several rituals were performed. They thought I was being denied my menstrual cycle as punishment for some sin we committed. It was psychological torture for me,” they recall.
After Class 12, Vinodhan enrolled in a diploma course in radiology, which opened them up to the world of health and medicine. Learning about anatomy, medical conditions, “ambiguous” genitalia, chromosomes and more, things began to finally fall in place for Vinodhan. “I realised nothing was wrong with me, that I had not committed any sin. I was just an intersex person,” they say. The epiphany was what pushed Vinodhan into activism.
In 2019, the Solidarity Foundation organised a meeting in Bengaluru with around 20 persons, including intersex persons and their supporters from India and Nepal. “The aim was to understand the realities, challenges, needs, and aspirations of intersex persons, and potentially launch a mutual support group of and by intersex persons in India,” says Ritash, associate director of the foundation. “The number might seem small but it is not, especially considering the scale of invisibility and rejection experienced by intersex persons,” says Ritash, who is also a gender, sexual and romantic minority (GRSM) peer counsellor.
One common concern shared by those who attended the meeting, Ritash recalls, was a feeling of alienation, that there was no one else who shared their experience. “But there were also some people who had other intersex persons in their family. Now I know of five biological families in India with more than one intersex person.”
Kavin (28) and Giri (27) from Coimbatore, for instance, are brothers who both have intersex variations. “I was 12 years old when my doctors realised that I had male reproductive organs inside my body,” Kavin says. The revelation happened after he was made to undergo multiple tests one day, due to a severe stomach ache.
Kavin was raised as a girl, and his parents wanted that to continue. “But a doctor in Chennai advised against that, and they asked me what I wanted. I had always felt that I was a boy. So a surgery was performed with my parents’ consent,” he says. Giri, on the other hand, did not have to undergo any surgery, he adds.
There is a lot of nuance and granularity within queer communities that often go unacknowledged, says Nadika, a writer and researcher. For instance, there is a fundamental difference between the intersex and transgender classifications, which is that intersex is a biological designation, while being transgender is about a person’s gender identity. It is possible for a person to be both intersex and transgender. For instance, an intersex person who was assigned female at birth and later identifies as a man is also, technically, a trans person. “‘Intersex’ is an umbrella term similar to the trans identity. But it is also important to realise that not all intersex persons are trans persons and vice versa,” says Duha, a community organiser.
Even our doctors and the medical system as a whole don't completely understand the difference between a trans person and intersex person, says Nadika. “There is also a lot of lumping together of these two categories, when the needs and requirements of trans and intersex persons are mostly different, with only a few overlaps,” she adds.
Chakravarthy, a 40-year-old actor and intersex activist, points out that because of this conflation of two entirely different identities, when a child is born with an intersex variation, the parents assume they are transgender children. “They misunderstand and the doctors are unaware, which leads to ‘corrective’ surgeries without the person's consent,” they say. After they came out as intersex, Chakravarthy lost their job, and was asked to stay away from certain places and people. “Many people have mistaken me for a gay person. All this because people misunderstand me and my identity," they say.
Vinodhan says they did not even have an inkling about the existence of intersex identities until they were an adult. “My family wanted me to be a woman, but I am a man. When I said this to my doctors and other people in my life, they said I must be either a trans person or a gay person. Some doctors told me that I should meet a psychologist,” they say. Kavin says his doctors still consider him a trans man. “Even I had assumed so, until I came to know that I am intersex through an activist,” he says. Maya too is still referred to by many as a trans woman.
“There was a time when I wondered if I was a trans person after all, even though I felt different from them in several aspects,” Vinodhan says. “Some of our genetic variations can even lead to other health issues, such as retinitis pigmentosa (a rare eye disease that affects the retina) in my case.” Vinodhan also got their testes removed at the age of 27, as it was diagnosed to have turned atrophic, with the threat of becoming cancerous.
Several intersex persons TNM spoke to strongly feel that problematic and outdated medical terminologies remain a huge barrier to accessing proper healthcare. “Our invisibility is further accentuated due to the existence of some of these usages,” says Vinodhan.
Duha says that most healthcare facilities an intersex person approaches use outdated and derogatory words, such as “hermaphrodites”, to refer to them. The Cambridge dictionary defines hermaphrodite as a plant or animal that has both male and female sex organs. “We had learnt at school that earthworms are hermaphrodites. That is how we know the word. Are we like earthworms?” Maya asks.
Vinodhan recalls the dehumanising experience of a doctor asking them if they were a ‘hermaphrodite’ four years ago. “I was not even a patient. My father was admitted to a hospital and I was just accompanying him,” they say. Even though the term ‘intersex’ has been included in newer medical textbooks, albeit without much detail or explanation, a majority of doctors refuse to learn or get updated, Duha says.
Another commonly misused term is ‘Disorders of Sex Development’ (DSD), Maya says, and asks why something as natural as a biological variation is considered a “disorder”.
Being intersex is not an inherent disability, Chakravarthy says. “It is a biological variation that society has turned into a social disability, by discriminating against us and denying us education and jobs. The world is simply not accommodative of intersex persons, which is what makes our lives difficult and miserable,” they say.
So the intersex community has instead come up with terminologies to reclaim the narrative, Duha says. “Words such as ‘disorders’ can be replaced with ‘variations’, ‘differences’, or ‘diversity’ instead,” they say. Some common terms used by intersex activists and others in the know are Difference in Sex Development (DSD), Diverse Sex Development (DSD), and Variations in Sex Characteristics (VSC).
“Many medical textbooks have now started replacing the term ‘disorders’ with ‘differences’, as is preferred by the intersex community,” says Vignesh Dhananjayan, a trans non-binary medical student. But while some authors are sensitive to this, there are still several books that address intersex persons as hermaphrodites, they add.
Vignesh says there is also little awareness or sensitisation among the medical community about intersex persons. “Intersex persons are generally just an abstract idea for many students and medical professionals until they meet them in person. Many of them also don’t understand why an intersex person may not align with their assigned sex. This often causes mental agony to the person concerned, having to constantly explain why they don't feel at ease with the sex that has been assigned to them by doctors,” he explains.
Duha also highlights another systemic problem — the lack of regional terminologies to refer to intersex persons — which impacts their lives at a foundational level. “In Hindi, intersex persons are called ‘antharlingi’. I have heard a similar word used in Tamil as well. Some regional terms used in this context are simply specific references to a person’s phallus. None of these reflect the meaning of the English word intersex, which means ‘in between sexes’, something that is atypical of or does not fit into the binary of sexes. The lack of a word to refer to us in our own mother-tongue is a problem, as our people do not even have the means to differentiate between intersex persons and, say, hijra or trans persons,” they say.
Last year, in a first-of-its-kind move in the country, the Tamil Nadu government published a glossary of LGBTQIA+ terms in Tamil in the government gazette. The glossary was adapted for the most part from the LGBTQIA+ glossary published by Queer Chennai Chronicles, The News Minute, Orinam, and several queer individuals, although the government's latest version has some changes. The glossary, which is currently being translated into other Indian languages, gives two translations for the word ‘intersex’ — ‘oodupaal’ which means intersecting sexes and ‘idaippaal’ which means in between sexes. Previously, the term ‘idaiyalingam’ was used.
Intersex genital mutilation (IGM), medically referred to as cosmetic genital surgery and commonly called ‘corrective surgeries’, are surgeries performed on intersex persons, especially children, who are born with variations in their genitalia. Once a child is found to have varied genitalia, parents and doctors decide to perform sex-selective IGM (selecting one sex and mutilating the genitals to make them align with the said sex) on the child, based on several factors. For instance, if parents want a girl child, the penile portion is removed. These surgeries are commonly performed without the consent of the person concerned — who are mostly infants or children at the time of the surgery — and for the sole purpose of getting them to conform to binary sex and gender norms.
Maya, who was made to undergo gender mutilation when she was in Class 9, says her life since has been excruciating. “I am still facing a lot of health issues because of the surgery and the testosterone boosters I was given,” she says.
“After the parents get their child to undergo ‘corrective’ surgeries because they want them to be a particular gender, the child may end up identifying with a different gender. This means they will have to undergo multiple surgeries later in life, like in my case. This is why individuals must be allowed to make their own decisions about their bodies,” Maya says, asserting that gender mutilation should not be carried out on children.
Maya dropped out of college due to the mental and physical harassment she had to face there. She eventually resorted to sex work, and even begged on the streets for a brief period, before joining a non-governmental organisation and then a boutique for a day job. After she finally realised she was an intersex woman, she underwent another gender affirmation surgery. “This was technically the second surgery performed on my body, after the mutilation. I am supposed to undergo one more surgery,” she adds.
“The medical fraternity across the globe has for long been making attempts to ‘fix’ intersex bodies to make us ‘normal’. All they want to do is put us in a box marked male or female and shut the lid on the conversation. They are not even ready to think beyond it,” Duha says.
There are some mechanics that parents and doctors usually employ to determine what gender they will assign to an intersex child, such as the length of the genital area, says Nadika. “But such procedures are usually medically unnecessary and will have long-lasting repercussions for the person at a physiological, psychological, and emotional level. It will result in both psychological and physical trauma and several other problems later on, and the doctors are most likely not aware of any of this,” they say.
“Terms used by many healthcare professionals such as ‘Disorders of Sex Development’, hermaphrodite, and ambiguous genitalia, are all just attempts to abnormalize and pathologise intersex persons. Any body that does not adhere to the binary norm is turned into a medical anomaly that requires ‘fixing’ or 'correction',” Ritash says. The system treats intersex individuals as lab rabbits to be tested on, Maya adds.
Speaking to TNM, a senior consultant paediatric surgeon says the situation is more complicated. “Performing a surgery is a complex decision taken by a group of specialists after analysing several factors. In emergency situations, especially when they are life threatening, we have to make decisions immediately. For instance, a bad gonad could become cancerous at a later stage in life. Sometimes early surgery also becomes mandatory to preserve the child’s gonadal function and renal (kidney) health, and to prevent urinary tract infections resulting from anatomical differences,” she says, adding that the risks and benefits have to be weighed before taking any decision.
The doctor also disagrees with the term ‘gender mutilation’, preferring to use the term ‘gender reconstruction’ instead. “Mutilation is just cutting off things, which is not what we do. A surgery such as this involves specialists from the departments of endocrinology, psychology, social work, and genetics, in addition to which several tests are also administered.”
She stresses that such surgeries, however, should only be performed in a multi-disciplinary hospital. “If a child is born with visible sexual variations, they should be referred to a hospital with all available facilities,” she adds.
But the issue arises when an intersex child’s autonomy is often completely negated by their parents and doctors, Vignesh says. “A child too has their own autonomy. Even medicolegally, they have the right to know what is happening with their bodies. But we have seen many parents, and even doctors, hiding from their child that they are an intersex person. When they discover this in a later stage of their life, they are traumatised,” he says.
Intersex persons may not trust healthcare professionals until they stop obsessively pathologising them, says Ritash. “A doctor who doesn’t know about intersex variations or is uncertain about a medical procedure must disclose that to the intersex person consulting them, and not experiment upon them without their prior and informed consent,” they say.
L Ramakrishnan from the NGO SAATHII, a public health professional who also volunteers as a peer counsellor with the Chennai-based LGBTQIA+ support group Orinam collective, says many medical professionals make decisions regarding the bodies of intersex persons almost as if they are experimental projects. “This is not only with regard to how they perform surgeries on children, but also extends to how they deal with intersex individuals who approach them with health issues later on in life. Many of them are not aware of the issues faced by intersex adults who have been subjected to surgical interventions as infants or children, so they may not really know what to do,” he says.
Medical professionals should be aware and respectful of a patient’s rights and autonomy, Ramakrishnan says. He suggests getting updated on the Consensus Statement, developed by a European multidisciplinary group of experts including patient representatives. The statement summarises “evidence-based and experience-based recommendations for lifelong care” of intersex individuals.
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According to Duha, many doctors also assume that intersex persons do not have enough knowledge about their own bodies, and hence ignore what they have to say. “Medical spaces have constantly made me feel unheard about my experiences or discomforts,” they say, adding that medical professionals often just directly connect any problem they face to their genetics or intersex variation.
“I have been asked to show my genitalia to doctors when I went to them for a skin issue. The dermatologist also questioned its appearance. They are curious about us, so they simply connect everything to our genitalia,” Duha says. They add that the privacy of intersex persons, as is the case with many others within the LGBTQIA+ community, is violated without any hesitation.
“If I disclose that I am an intersex person or that I am aromantic/asexual, they become alarmed and curious. We will be asked about our intimate relationships, even if it is not connected to our diagnosis. I might have gone to the doctor for a cough or cold, but we will be talking about my sexuality,” they say.
Chakravarthy was 31 years old when they found a doctor who said they knew how to resolve their ‘issues’. Chakravarthy didn’t know they were intersex then, and that the ‘issues’ they were facing was just urinary incontinence and periods. Instead, the doctor told them they had to undergo a surgery because their life was under threat. “Post the surgery, I was affected by an autoimmune disorder, and since then my health has not returned to normal. That doctor later stopped attending to me and asked me to go elsewhere,” they say.
It was at the age of 38 that Chakravarthy finally realised they were intersex. “They performed that surgery on me without informing me about my intersex variation, without giving me an option to choose what part of my body I wanted.”
Chakravarthy's horrible experiences with the medical field did not end there. “I once went for a cystoscopy scan (in which a small thin camera is inserted into the urethra and passed into the bladder, to scan both the organs). The doctors and health workers treated me terribly, as if I am a different specimen. Once during the scan, a doctor refused to touch me and started to behave aggressively, causing me physical pain. All of this made my parents think it was better for me to die than go for any treatment.”
Vinodhan too has had similar experiences at the hands of medical professionals. “Once, as I was under anaesthesia for a medical procedure, I could hear the doctors making fun of me. They were saying hurtful things about my private parts. It was a joke for them.”
Maya says the reason behind such behaviour is the absence of a proper protocol or procedure while caring for intersex persons. “The protocols and guidelines when it comes to medical procedures of trans persons are lacking in several aspects, but it is still something. But intersex persons are not even acknowledged, let alone get a protocol. We don’t even know how many intersex persons there are in India. Trans persons get a transgender identity card now, but there is nothing specific for intersex persons,” she says.
Chakravarthy had recently acquired an identity card from the Tamil Nadu Social Justice and Welfare department, which mentions that he is an intersex person. The card, however, is the same as the ones given to trans persons.
There are no specific policies or legislations focusing on the intersex community, Duha says. Even the landmark NALSA judgement and the controversial 2019 Transgender Persons (Protection of Rights) Act clubs intersex and trans persons under one category. “Intersex persons neither have civil protection nor any health-related aid catered to their needs. At best, some state governments and national authorities have issued orders regarding IGM,” Duha adds.
In 2020, the Tamil Nadu government passed a government order that mandates a set of guidelines to be followed for treatments and surgeries on individuals with differences in sex development. The guidelines were introduced to regulate sex-assignment and bring uniformity to medical interventions, so that the treatment and surgery are in alignment with standard medical protocols.
“The GO directs caregivers/parents to give their child individual autonomy, so that when they reach an older age, they can decide what gender they feel most comfortable in and then undergo a surgery, if they want,” says Ramakrishnan. Even in a potentially life threatening condition, like urosepsis or cancer risk to the life of the intersex child, the interest of the child is of paramount importance, he adds.
As per the guidelines, DSD will only be managed in hospitals with multidisciplinary committees that will have at least three specialists — (1) a neonatologist, paediatrician, or paediatric endocrinologist, (2) a paediatric surgeon, and (3) a psychiatrist. The government has also laid down standard treatment guidelines on medical and surgical management of DSD, which includes mandatory parental counselling. It has also explicitly said that a surgery is permissible only in a “life-threatening” circumstance, and that decision can be taken only after discussions with the multi-disciplinary committee.
This GO was passed after the Madurai Bench of Madras High Court passed an order in 2019 directing the Tamil Nadu government to ban genital mutilation surgeries on intersex infants and children. Justice GR Swaminathan, who passed the order, also said that intersex children must be given their time and space to find their true gender identity.
Following the HC judgement, the National Medical Commission also issued an advisory against any teaching that can be derogatory, discriminatory, or insulting to the LGBTQIA+ community in any manner. The advisory also instructs authors of medical textbooks to amend any information about virginity and LGBTQIA+ communities in the textbooks, “according to the available scientific literature, guidelines issued by government, and directions passed by the courts.” It also directs medical colleges not to approve any books that have “unscientific, derogatory and discriminatory information.”
The marginalisation of an intersex person is also influenced by factors such as religion, caste, location, and even mobility, says Nadika. “I have a certain amount of social privilege that allows me to assert that I am an intersex person, hold my healthcare provider accountable, and get at least my basic needs met. But not all people are like me, and many of them are further held back by language, accessibility, or social barriers,” she says.
Vinodhan, who is from a scheduled caste (SC), concurs. “Intersex is a marginalised community, so are scheduled castes. In my case, I also have a visual impairment. I worry about how I will fare during my old age. Often, people’s attitudes are such that those who are micro-marginalised in this manner don’t deserve to exist,” they say.
To bring any positive change, society needs grassroot-level awareness about the granularity within the LGBTQIA+ community, Nadika says, while also calling for an understanding of how privileges differ from person to person. “There has to be a lot more needs-based analysis of what intersex, trans, or queer persons want. For this, consultations with the community should be conducted at least at the state levels,” she says.
Nadika adds that it is important to build sensitivity, understanding, awareness, and knowledge about the community, but that it cannot be done by the community members alone. “The government should definitely intervene. It has to take multiple steps including issuing circulars to hospitals and other health facilities on how to interact with and treat an intersex person. Accountability has to be instituted at some level. The media, volunteers, and non-government organisations also have to be collaborators.”
Chakravarthy puts forth three primary demands — (1) gender-neutral bathrooms in schools and public places, (2) a special government insurance scheme for intersex persons, and (3) generation of awareness about LGBTQIA+ identities from school. “Awareness in school is crucial. If the school is accommodative of a person’s differences, they will be able to peacefully complete their education and get a job without being forced to depend on anybody else,” they say.
Also, society has to learn to speak to intersex persons, and queer persons in general, in a kind and respectful manner, Maya says. “I stopped talking to many people in my life because of their curiosity and questions that were disrespectful to my body. This kind of verbal harassment, which is usually normalised in close circles, should stop,” she says.
Maya further stresses on the need to institute support systems for individuals who disclose their identity and are not supported by parents. Any intersex person in need of help can contact IHRI, she says. The foundation can be contacted at intersexhumanrightsindia@gmail.com.
Watch: The pathologising of intersex bodies, and how it affects access to healthcare
This article is supported by the Health Systems Transformation Platform (HSTP), as part of its Health Journalism Fellowship 2022.
Part 1 of TNM’s Access Denied series, which explored how the Kerala government has failed sex workers, by seeing them only as vectors of HIV, can be read here.
Part 2 of the series, which delved into the lives of exclusion led by transgender women in Kerala, can be read here.