According to the United Nations for LGBT Equality fact sheet, intersex people are born with sex characteristics (including one or more of the following – genitals; internal reproductive organs, specifically the gonads; sex hormone levels; and chromosomal patterns) that do not fit typical binary notions of male or female bodies. The fact sheet says that 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 percent and 1.7 percent of the population is born with intersex traits. An intersex person may be straight, gay, lesbian, bisexual or asexual, and may identify as female, male, both or neither.

Children seen to be intersex at birth are often treated as having a disease or defect that needs to be ‘fixed’, instead of recognizing them as having different type of genitalia. Because the norm in society is to link sex with gender, and box people into male and female, who are then expected to later become men and women, and perform masculinity and femininity, respectively, the difference in sex characteristics that intersex persons have is often not recognized or respected.

Instead several steps are taken by the medical community and parents (who are often pushed by the medical community and societal pressures) to restructure the genitalia of intersex children through often medically unnecessary surgeries so that they might fit into the binary. The societal hostility to gender fluidity and gender non-conformity adds to this.

However, for the intersex people concerned, this external pressure to conform to the sex and gender binaries causes psychological problems, issues related to their sense of self, detachment from family, issues with finding a partner, distrust towards the medical community, and mental trauma.

Many forms of intersexuality can exist, some may be apparent prenatally, some at birth, some at puberty or when trying to conceive, and sometimes the trait may become apparent through random chance. Intersexuality is not about gender identity – it is about having non-heteronormative bodies. As mentioned earlier, intersex people may have a broad range of gender identities. The societal stigma against intersex people leads to a lot of mental health concerns. This is because a salient part of their identity is not discussed, or is considered an abnormality. Further, people often automatically assume that intersex people are trans even though they might not identify as such.

Quote: About the Bangalore consultation: To address the issues faced by intersex people in India and create greater awareness about them, Solidarity Foundation and the Child and Adolescent Psychiatry Department of National Institute of Mental Health and Neurosciences organized a public consultation in Bangalore on October 23, 2017. The consultation had around 80 participants working on a range of relevant areas like healthcare, human rights, legal and policy issues of the intersex community. The objective was to bring together intersex people who could share information and discuss the issues they faced, as well as develop strategies and action plans to overcome the problems. According to the consultation report, one of the first inspirations behind this historic event was Manjesh Shivagangaiah, who identified as an intersex person. He was a brave man who followed his dream to establish a home for children of sex workers. He passed away in December 2015 because of cancer, and the consultation was in many ways a tribute to his memory. The consultation report titled 'What if It Is Neither?' was published in mid 2018 and has been summarized in this article.

Historic seminar on intersex persons’ issues in India

To address these issues and create greater awareness about the intersex community in India, Solidarity Foundation and the Child and Adolescent Psychiatry Department of National Institute of Mental Health and Neurosciences (NIMHANS) organized a public consultation on the issues intersex people face on October 23, 2017 in Bangalore. Both organizations are also based in Bangalore. Solidarity Foundation works on issues focussing on sexuality and seeks to provide support to sex workers and sexual minority groups. The consultation was also supported by Heinrich Boll Stiftung India.

The consultation had around 80 participants working on a range of relevant areas like healthcare, human rights, legal and policy issues of the intersex community. The objective was to bring together intersex people who could share information and discuss the issues they faced, as well as develop strategies and action plans to overcome the problems. The consultation report titled What if It Is Neither? was published in mid 2018 and has been summarized in this article.

Consultation proceedings

The consultation started with a session where intersex people presented and discussed the challenges that they face, particularly in navigating the healthcare system, and their position within the queer (or LGBTIQA+) movements. This was followed by three panels. The first panel brought together experts from the field of health and they outlined how medical professionals understand ‘intersex’, the limitations of the current framework, as well as the progress that has been made. The second panel focused on social policy and legal activism. The third panel brought together human rights activists and researchers who work with sexual minorities.

The participants included, among others, intersex community members and activists Justina, Minal P., Vishwas (from India) and Ayan D. (from Nepal); child rights activist Sameer K.; transgender activists Delfina from Nirangal, Chennai, Amrita Sarkar from SAATHII, Delhi and Santa Khurai from AMaNA, Imphal; lawyer Siddharth Narrain from Ambedkar University, Delhi; psychiatrist Dr. Ranjita Biswas from Kolkata; counsellor Vinay Chandran from Swabhava Trust, Bangalore; Dr. Shekhar Seshadri from NIMHANS and Shubha Chacko from Solidarity Foundation.

The issues discussed were the harmful effects of ‘corrective’ surgeries at birth and the avoidance of these surgeries unless they were necessary to the life of the child or to prevent a physical discomfort. The participants also emphasized the need to educate the public, especially parents, children, activists and healthcare professionals. It is necessary for all to be aware that what is generally defined as a ‘normal’ body is very limiting. Instead of defining bodies and people as ‘normal’ and ‘abnormal’, the existence of diversity needs to be recognized, and terms such as ‘disorder’, ‘disease’ and ‘abnormal’ should be avoided. Globally, there is a growing demand to replace the term ‘disorders of sexual development’ with ‘differences in sexual development’.

The participants also discussed some of the practical issues that intersex people face, which greatly hamper their life chances and opportunities. Intersex foetuses are often aborted. They face ostracization and are forced to forgo their education and social life. They face high levels of unemployment because of rejection from employers. Their social and physical identities are questioned at every level and they find it difficult to secure even basic amenities like housing.

Some intersex people may also identify as transgender, but the two communities are often lumped together without recognizing the differences in the issues that are faced by each group. Intersex individuals also feel the need to hide that they are intersex because of the stigma surrounding them. Thus, they live in the constant fear of being ‘outed’.

Quote: Intersex persons speak: Ayan D., intersex rights activist, Nepal: “While LGBTIQA+ groups include the ‘I’, intersex persons seem invisible across Asia. In fact, I’ve been termed a cheat sometimes due to my original documents.” Vishwas, Tamil Nadu, India: “Being intersex is not my fault and I’m useful. I’m not seeking sympathy. I’m requesting societal introspection.” Minal P., Karnataka, India: “I was raised as a boy in a protective environment. Yet, I was a lady mentally and physiologically and underwent the necessary treatment. My family, friends and employers supported me. Studying life sciences helped me understand myself better. I updated my name and gender in most identification documents and am trying to streamline other documents. I wanted to be a woman but I feel like a superwoman and am keen on assisting intersex persons in whatever way I can!”

The psychosomatic realities of intersex children and adults are rarely understood by parents and other family members, friends, teachers, and employers. The pervasive heteronormativity of society only recognizes the male-female binary, and links gender to the assigned sex of a person, without acknowledging the possibility of intersexuality.

Even when LGBTIQA+ issues are discussed, very little is known about the ‘I’ in the movement. The queer movements in India need to be more inclusive and also push for the concerns of intersex people. Queer activists need to realize that intersex people also face some of the same obstacles as that of other gender and sexual minorities, like difficulty in updating identity documents, finding housing, employment, and accessing education and healthcare.

Intersex people face unique issues as well. Abortion of intersex foetuses is one such issue, as is intersex genital mutilation, where healthcare professionals often subject them to unnecessary ‘corrective’ surgeries at a very tender age when they are not in a position to give informed consent. Several measures are taken to force them to ‘fit’ the sex and gender binary, and these coercive measures often have a lasting impact on their mental health. Equally crucial is the need for clear guidelines for situations when medical interventions become necessary to tackle or avert health complications in intersex children.

Potential way forward

Recommendations for caring for intersex people were discussed at length in the consultation. Physicians should be required to make a full disclosure to parents regarding the nature of the intersex diagnosis, and if any medical intervention is actually necessary for the life of the child. There should also be an ongoing process of disclosure of the intersex status to the concerned child in an age appropriate way.

It should also be recognized that genital surgery is not needed for gender assignment, and parents and others involved need to be open to the gender identity chosen by the intersex person. Trained mental health professionals should be made available to parents and children in case of identification of an intersex condition. Parents and other family members of intersex children also need information and social support to deal with the stigma associated with a person having an atypical or non-normative body.

Quote: Extract from advocate Siddharth Narrain’s presentation on challenges faced by intersex sportspersons: “Intersexuality and fairness in sports has been a much-debated topic. Asian Games and Asian Youth Championships athletics medallists (respectively) from India, Santhi Soundarajan and Dutee Chand, and Olympic athletics medallist Caster Semenya from South Africa, were disqualified because they failed gender testing for women. Dutee and Payoshni Mitra, a gender rights researcher and activist from Kolkata challenged the decision and approached the Court of Arbitration for Sport [in 2015], which stayed the case for two years as it needed to establish if the ‘unfairness’ had a scientific basis . . .”

Key recommendations in the legal context included recognizing that the 2014 NALSA verdict of the Supreme Court of India, which upheld the right to gender self-determination, included a number of issues related to changing legal documents, which also apply to intersex persons. The Juvenile Justice (Care and Protection of Children) Act, 2015 and the corresponding state level rules should be expanded to include intersex and gender non-conforming children. It was also suggested that like Germany and Australia, India could also start issuing birth certificates without gender specifications, which could be included later when the child grew up and took a decision.

Creating a support network of researchers, lawyers, medical professionals, activists and media persons for issues related to the intersex community, and developing fellowship programmes for intersex individuals aimed at socio-economic empowerment and documentation of their lives were among some of the innovative ideas discussed.

The consultation also referred to the Malta Declaration, which was issued at the ‘Third International Intersex Forum’ organized at Valletta, Malta from November 29 to December 1, 2013. The declaration consisted of demands for rights of intersex people to bodily integrity, physical autonomy and self-determination. Among the key demands listed in the declaration was action at a global level to depathologise variations in sex characteristics in medical guidelines, protocols and classifications, such as the World Health Organization’s International Classification of Diseases.

The consultation served as an information sharing platform and the consultation report documents several resources on issues concerning the intersex community like sports, media representation, human rights and legal issues. Information was shared during the consultation about the Intersex Human Rights Fund established by Astraea Lesbian Foundation for Justice, New York in 2015. Their report WE Are REAL: The Growing Movement Advancing the Human Rights of Intersex People, also published in 2015, is a key information resource that provided motivation and momentum for the organizing of the consultation.

The consultation ended with the screening of a documentary Intersexion, directed by Grant Lahood in 2012. The film follows the journey of New Zealander activist Mani Bruce Mitchell who travelled to many parts of the world talking to other intersex people and exploring their lives. The documentary aptly raised the question, “Why is this relatively common condition so unknown?”

Readers can access a copy of the full consultation report here – Editor.

About the main illustration: Cover page of the consultation report What if It Is Neither?