Beyond binaries: Why healthcare professionals need intersex sensitivity

"I thought I was the only one like this in the world" is the common refrain of most intersex persons in India, some of whom I have known closely for nearly eight years, as a supporter and peer counsellor of the LGBTQIAP+ (lesbian, gay, bisexual/biromantic/bigender, transgender, queer, questioning, intersex, asexual/aromantic/agender, pansexual/panromantic/pangender, and other queer identities) community.

'Intersex' is an umbrella term for people who are born with one or more traits in their chromosomes, genitals, hormones, or internal reproductive organs that don’t fit the typical male or female patterns.

Intersex persons having unique variations (presently, around 30 are known internationally) currently constitute about 1.7 per cent of the global population.

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They can have chromosomal differences, atypical genitalia, distinct hormonal development or other traits which may manifest in-utero, during infancy, early childhood, teenage or later. Some intersex persons may have endocrinological, gynaecological, mental or other health issues.

Maya's story

Sakthi SriMaya (called Maya), a 29-year-old asexual Dalit intersex woman, had a happy childhood until her seventh standard.

From then, she began to have a dilemma about who she was. "I wondered whether something was wrong with me or if I had any illness," shared Maya, who has movement disabilities.

Hailing from a Tamil family in Chinthalapattadai village, in Andhra Pradesh's Nagari district, Maya, who enjoys sketching, taught art at a school in her hometown. However, she left that job as the school's staff members ridiculed her sexuality.

Socialised as a boy, Maya faced familial rejection, too. She decided to undergo gender affirmation surgery (GAS is a series of surgical procedures that help people transition to their gender identity) in 2019. She chose a hospital in Puducherry since it was affordable.

Surgery gone wrong

Unfortunately, the surgery triggered orthopaedic issues including severe pain while standing or walking. Though the hospital’s surgeons were, on the face of it, trans-affirmative, their awareness regarding intersex persons seemed minimal.

In my view, experimenting with intersex persons is irresponsible and unacceptable

Amidst her multiple health, societal and financial challenges, Maya managed to get a computer science degree (studying remotely) while working in Bengaluru and Chennai in various private organisations.

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“While growing up, I was given many medications including hormone boosters due to which I hated the smell of medicines and lost my self-confidence,” said Maya.

Uninformed healthcare providers

One of the major challenges faced by intersex people is that they are often medically treated by uninformed healthcare providers.

Healthcare professionals '(mis) treat' intersex persons without knowing their realities and needs. In fact, family physicians, surgeons, psychologists and other healthcare providers pathologise (regard or treat as psychologically abnormal) intersex persons.

Dr Swathi SB, a public health physician, works with marginalised queer and transgender communities in Karnataka. She believes that many healthcare providers in India, especially paediatricians, believe that "corrective surgeries/medical interventions assigning the sex of intersex children" — which is presently outlawed in Tamil Nadu and pending affirmative interventions by the Kerala, Delhi and Indian governments — will help reduce their social stigma.

Severe gap

“Evidently, this is the cis-heteronormative or binary way of approaching sex and gender prevalent in the medical system and larger society. Practitioners, medical education and health systems hold great power in breaking some of these frameworks rather than reinforcing deviance/abnormality,” observed Dr Swathi.

Dr Saara, a junior resident in psychiatry in Visakhapatnam, remarked: ”After examining an intersex child who came to my notice, I realised the severe gap between intersex persons’ needs and healthcare providers’ understanding of them.”

She contacted Maya to ensure she was guiding the child’s parents appropriately.

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Few intersex affirmative psychiatrists

This is significant as India currently has minimal intersex affirmative psychiatrists, who have examined intersex children and counselled their parents successfully. Also, Dr Saara’s willingness to learn from intersex persons about their specific issues and requirements is exceptional though vital.

Sadly and outrageously, surgeons operate upon intersex children and adults with minimal knowledge, shared Suresh and Maran (names changed as requested), two financially marginalised Dalit-Bahujan intersex persons. These surgeons are hardly accessible and accountable after the surgery, especially if it fails or introduces other health issues, as happens with many intersex persons, they added.

Originally from central Tamil Nadu, both their siblings are intersex, too. Maran, aged around 30 years, revealed that cancelling their presumed gender affirmation surgery sometime back was among their life’s best decisions.

Creating support systems

India lacks reliable data on the number of intersex persons in the country. Few healthcare institutions record or report the existence of intersex persons.

Mohammed Ali Khan, a Bengaluru-based trans and intersex persons’ health researcher, remarked: “A common but incorrect notion is that intersex persons have both types of fully developed genitalia.”

This misconception stigmatises intersex persons, which then forces them or their families to hide that they are intersex.

Yashika, a Punjab-based Dalit transwoman from Uttar Pradesh, observed: “Intersex and transpersons have distinct lives, problems and requirements. But intersex persons are clubbed with transpersons, thereby rendering the former almost invisible. Some intersex children are even given away to hijras."

A postgraduate in human rights, Yashika advocates for intersectionally marginalized LGBTQIAP+ persons’ rights. She championed the establishment of inclusive hostels and an anti-discrimination cell for transpersons at her university.

Battling ostracisation

While handling institutional discrimination is tough, societal and familial ostracisation is worse.

“When leaving for the Bangkok Asian games as the Indian women’s football team member, I was suddenly excluded as I was neither a woman nor a man. I returned from the airport," revealed Boni Paul (they/them), a prodigious 47-year old footballer, sculptor and intersex person from a financially marginalised background in North 24 Parganas district, West Bengal.

"That hurt me immensely and I decided to create awareness about intersex persons. I left home since my family and various football associations rejected me and I lacked a safe space,” they added.

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Boni, whose life is chronicled in the documentaries The Front Runner and I am Bonnie, was a part-time sports coach at a government children’s home in Kolkata.

They have counselled intersex children’s parents, helped West Bengal government bodies rehabilitate abandoned intersex children from Bangladesh, Bhutan and Nepal and sensitised physicians and surgeons on providing intersex affirmative healthcare.

Yet, Boni and their life partner Sathi’s multiple and complex health issues prevent them from earning enough for their living and healthcare.

Intersex Human Rights India

In April 2019, Maya, Mohammed, Boni and nearly 10 other intersex persons from across India co-founded Intersex Human Rights India (IHRI), an informal, pan-India network of intersex persons providing emotional support and legal and healthcare referrals to intersex persons and their families.

Dr Swathi sums up the situation thus: “Currently, for intersex affirmative care, people rely on individual healthcare providers, who may be motivated to educate themselves and connect with relevant groups like IHRI or community-based organisations.

“But for our healthcare to become affirmative systemically, our medical education must move beyond the binary understanding of sex, gender and bodies and the needs and realities of intersex, trans and queer individuals should be respectfully represented.”

Further, the overall medical curriculum should be embedded in a rights-based approach that prioritises people and includes bodily autonomy, patient rights and pertinent social justice movements.