3.1 Backdrop

Transgenders are individuals whose gender identity does not conform to gender norms and expectations traditionally associated with their sex assigned at birth [1]. It is an identity or expression when gender differs from sex. Those who have medical interventions to transition from one sex to another identify as transsexuals. The term transgender includes people who belong to the third gender. The terms transgender and transsexual are commonly based on distinctions between gender (psychological and social) and sex (physical) [2, 3]. Transsexuality may be said to deal more with physical aspects of one’s sex, while transgender relates more to one’s psychological gender disposition or predisposition [4].

According to WHO, transgender have lower access to health and HIV services due to a range of issues including legal barriers and stigma and discrimination. WHO works with international and country partners to address the varied health needs of transgender, including HIV prevention, diagnosis and treatment and also to address structural barriers which impact service access by transgender [5].

A lack of legal recognition of transgender in most countries contributes to their exclusion and marginalization. Transwomen are around 49 times more likely to be living with HIV than other adults of reproductive age with an estimated worldwide HIV prevalence of 19 percent. A 2008 synthesis of published US studies reported that HIV rates among Black, White, and Hispanic transwomen (assigned male at birth) was 56%, 17%, and 16%, respectively. HIV infection rates among transmen (assigned female at birth) have been difficult to determine [6].

In some countries, HIV prevalence in transwomen is 80 times more than the general adult population. The United States National HIV/AIDS Strategy notes that transgenders are at high risk for HIV infection and efforts specifically targeting transgender populations are minimal. Transgender adults and adolescents, regardless of HIV rates, have many individual, interpersonal, social, and structural factors contributing to HIV infection risk, not all of which are unique to their gender identity [6].

A comprehensive package of services is recommended to address HIV in transgender through health interventions for injected drugs, HIV testing and counseling, HIV treatment and care, and sexual and reproductive health [5].

In the early twentieth century, cross-dressing and transgender and gender nonconforming (TGNC) were medicalized. John Hopkins University started providing gender-affirming care followed by University of Minnesota and other medical centers across the USA [7]. In the 1980s and 1990s, clinical services were primarily provided in private practice. Some transgender health research was being conducted in the USA. A surge in research followed which revealed that TGNC people are disproportionately affected by HIV.

Many transgenders experience gender dysphoria and seek medical treatment such as hormone replacement, surgery, and psychotherapy [8]. All transgenders do not desire such treatment, but some who do cannot undergo sex reassignment surgery (SRS) because of financial or medical reasons [8, 9].

Many transgenders face discrimination in the workplace and in accessing public accommodations and health care. Also, in most places, they are not legally protected from discrimination [10,11,12]. Non-recognition of identity of transgender results in their facing extreme discrimination in all spheres of society, especially in the fields of employment, education, and health care.

Despite the discrimination between sexual orientation and gender, throughout history, the gay, lesbian, and bisexual subculture was often the only place where gender-variant people were socially accepted in the gender role they felt they belonged to, especially during the time when legal or medical transitioning was almost impossible.

3.2 Research on Transgender

Research was undertaken to study the values, preferences, and practices with regard to self-care for sexual and reproductive health and rights (SRHR) and HIV prevention and treatment in transgender. The objectives were to obtain an understanding of their views about self-care practices; how they obtained information on self-care interventions; what were their motivations to use them; what barriers they faced while using them; and what they did if self-care practices failed.

Research was undertaken in Delhi, Mumbai, Hyderabad, and Coimbatore. A qualitative study design was employed. In-depth interviews (IDIs), focus group discussions (FGDs), key informant interviews (KIIs), and workshops were conducted with transgender. Qualitative research methods allowed greater spontaneity and interaction with participants. They provided an opportunity to the participants to respond elaborately and in greater detail. The interviews were conducted using interview guides. The interviews were approximately 90–120 minutes in length. The interviews were recorded, and the recordings were transcribed and checked for accuracy. Two IDIs, two KIIs, and one FGD (8–10 participants) were conducted in Mumbai. Workshops were conducted with 10 participants each in Delhi, Hyderabad, and Coimbatore to understand their general health problems, sexual health, and HIV, and how they accessed information on SRH products and services on social media and other platforms.

For the key informant interviews, participants were selected on the basis of their experience. They were peer educators working with NGOs. For in-depth interviews, outreach workers with 4–5 years of experience were selected. Focus group discussions included peer educators, outreach workers, and other young people. During the workshop, participants were asked to depict their sexual practices in art form for which they were provided with colors and canvas.

Triangulation of data generated by KIIs, IDIs, FGDs, and workshops made it possible to obtain reliable information on complex issues. Ethical approval for undertaking the study was granted by the Ethical Review Board of the Humsafar Trust. Before initiating the study, participants were given consent forms which described the study. Consent of all participants was taken in writing and orally. Confidentiality of all participants was assured.

3.2.1 Research Findings

The findings include a discussion of the feelings and behaviors of transgender from childhood to adulthood; self-care interventions for SRHR; information sources for SRHR; risks and barriers faced by the community; and motivations for self-care.

3.2.2 Reflections of Transgender

Having the soul of a woman and body of a man… it is like a woman is trapped in a man’s body’ and it kills a person from the inside.

They had this feeling from their childhood but when they turned around seven, they began to perceive effeminate feelings. Most transgender started realizing that they were different from their brothers and other men around.

During our childhood, we liked to play with dolls and were more involved in household work with our mothers.

They were physically abused at an early age by family members and other men.

After abusing us physically, the older members of the family forced us to keep silent.

Some of them were very keen to undergo their sexual transition partly or fully. In this process, they faced many difficulties.

If we have soul of a woman, we want to look like a woman.

Some wanted to undergo sexual transition, but their families did not agree because of societal discrimination and status within their community.

After knowing my identity, my family wanted to hide it from society and forced me to behave and dress like a man.

Most of them eventually left their families and began living alone or among other transgender. Their “gurus” (teachers) and other transgender were their only support system. They were their only family.

Only the gurus support us and allow us to live as we are.

3.2.3 Self-care Interventions for Sexual and Reproductive Health

With respect to self-care interventions, they preferred to use condoms and gels. Either they got these free of cost from NGOs or their clients brought them along. The use of gels was very common among transgender. They sometimes purchased these from medical stores, although that was not always affordable.

Due to lack of money, sometimes we cannot even buy a condom.

The study indicates that earlier when they were not aware of the risks of unprotected sex they were ready to have sexual encounters without protection (Fig. 3.1). This is now not the case and most used condoms and gels during penetrative sex. However, transgender did not always use condoms during sex with long-term partners (“boyfriends” or “husbands”).

Fig. 3.1
figure 1

Unsafe sex with multiple partners painting by Ashu (Bips)

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They frequently had sex without protection for the sake of more money.

We easily get ready for sex without condoms for extra money.

They were reportedly violated by their clients and were forced to have unprotected sex.

It is more important for us to live than to insist on the use of condoms when a client is threatening.

The study showed that they required more comprehensive interventions for sexual and reproductive health. To treat common ailments (flu, aches, pains, diarrhea), the community often visited known pharmacists for medication. Those who could afford to visit private practitioners for HIV and STI treatment did so. Many who could not afford treatment from qualified medical practitioners visited quacks and untrained practitioners. This community visited the government hospital, as a last resort. This was because of the high levels of stigma and discrimination they faced at government hospitals, especially for treatment of sexually transmitted infections (STIs) and HIV. The hospitals and centers provided antiretroviral therapy (ART). There have been technological innovations and developments in medical technologies. Transgenders, however, feel deprived as they could not get these products because of their inability to pay for them. The study showed that because of lack of social support, limited resources, and fear of violence, transgenders had to compromise their sexual health.

3.2.4 Information Sources for Sexual and Reproductive Health

The data revealed that transgender had knowledge about sexual and reproductive health. They got information about protected and safe sex through the social media, mass media, television, radio, and peer educators and NGO outreach workers. NGOs organized workshops and undertook behavior change communication activities to enhance the communities’ knowledge and to make them better informed about sexual and reproductive health products and services.

NGOs provide us information through workshops and outreach workers.

After their association with NGOs, transgender became more aware of the importance of their sexual and reproductive health and the adverse effects of unsafe and unprotected sex. NGOs provided them services such as regular medical checkups and tests for syphilis, other STIs and HIV. NGOs also provided counseling.

3.2.5 Risks and Barriers Faced by the Community

Some transgender begged in local trains and at road intersections. They were given targets of earnings per day by their gurus.

We have to earn 1000 bucks a day.

They were often not allowed to enter the local trains and were beaten up or thrown out by the police if they found them begging.

Police beats us if they find us begging in the local trains.

There were different socio-economic levels among the transgender. Some did not have enough money to buy products such as condoms, creams, and gels, which compromised their sexual and reproductive health.

Sometimes we do not have enough money to buy food, condoms and gels are just a thought.

There were many transgender who provided economical and emotional support to their families and even to the families of their partners.

We are responsible for taking care of the needs of our family. It is a part of our struggle which we have accepted.

After their association with the NGOs, they became more aware of the adverse effects of unprotected sex and refused to have sexual encounters without protection.

We are well informed now. We do not have sex without using condoms.

A number of transgender opted to undergo transition partly or fully. Some used hormones without medical consultation and advice which led to complications and had adverse effects on their health. However, over time, they became more aware of the importance of professional services. They underwent the procedures for gender transition through medical channels.

The study showed that transgender faced multiple obstacles in accessing government health services. These included discrimination and refusal of treatment. They were stigmatized, so they preferred to take medicines from the pharmacies. Sometimes, they were not able to explain their sexual health problems to the pharmacist and so took inappropriate medications, which resulted in side-effects and other health problems.

We do not clearly explain our sexual health problems and sometimes take the wrong medication.

Breast enhancement

Peers suggested various drugs that had worked for them for breast enhancement. They obtained these drugs from known pharmacists. The risk of taking unprescribed medication (often in the wrong doses) resulted in complications, including kidney and liver disease. Their extreme gender dysphoria compelled them to transition, for which they needed surgery and hormones, at any cost. A critical factor when making decisions about transitioning was the cost of interventions. Though more expensive, those who could afford them preferred using silicone breast implants because they were reportedly safer. However, the community described several instances of silicon packing shifting out-of-place and leading to severe pain and other complications.

The community also went to great lengths to develop large nipples by using methods suggested by their peers and their gurus, which often resulted in severe complications. The community felt it lacked reliable information regarding its transitioning needs. Given the high costs of transitioning, they were often forced into sex work to raise the money to pay for hormones and surgery. They also spent a great deal of money on beauty products and treatment (Fig. 3.2). Based on advice received from their peers and gurus, they bought creams, jellies, and injections from pharmacists (they knew and regularly visited) to support their transition. They also bought products such as condoms, lubes, sex toys, and sex enhancement drugs online using the Internet.

Fig. 3.2
figure 2

Enhancing beauty painting by Ashu (Bips)

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Sex Reassignment Surgery

The community primarily sought information on sex reassignment surgery (SRS) from peers and gurus. There were only a few qualified medical practitioners who carried out SRS. Even among those who were qualified, many were unable to deal with postoperative complications.

I was left with a hanging tube and bag for urine, which required frequent intervention because the tube detached itself and professional help was needed to reinstate it.

Additionally, qualified doctors often charged prohibitive prices making them inaccessible to most members of the community. For those who could not afford expensive doctors, unqualified practitioners and quacks were the only option. Unqualified practitioners conducted procedures under unhygienic conditions, without sterilization which resulted in infections, other complications, and even death.

3.2.6 Violence Faced by the Community

Those infected with HIV often lacked information about their condition and how to treat it. Since many had little or no information about their condition, they frequently dropped out of ART treatment. They faced stigma and discrimination in government hospitals. The junior doctors were not experienced with treating STIs in the community. They were often stripped and used as specimens to demonstrate different STIs in teaching institutions. They were verbally abused. They were treated as “untouchables” and examined from afar.

Doctors take pictures of our genitalia and show them to the senior doctors for medical consultation and also use them for teaching purposes.

3.2.7 Mental Health Issues Faced by the Community

The study showed that transgenders were at high risk of mental health problems such as depression, anxiety, and isolation because of their different gender and physical identity. They were abused physically and emotionally. They were violated by their families and by society. They often left their home at an early age.

They were abused (physically and sexually) by partners, clients, police, communities, gurus, and others. As far as their gurus were concerned, however, even if they beat and abused them, the deep emotion that they felt for them did not change.

When our guru beats us, it feels like our father is beating us for our mistakes…we feel more like a family.

3.2.8 Motivations for Self-care

The study showed that when transgenders were unaware about the risks of unprotected sex they were at high risk of HIV and STIs (Fig. 3.3). With increased awareness in the community over time through NGOs and peers, they became more informed, aware, and concerned about their sexual and reproductive health. NGOs provided them regular medical checkups and counseling and also motivated them to follow self-care practices.

Fig. 3.3
figure 3

Addressing risk painting by Amit (Sanjana)

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At the end of the day, our livelihood and lives depend on our appearance and presentation. The more healthy we are, the more beautiful we will be and the more we will be desired. So, we will earn more money!

3.2.9 A Transgender’s Personal Narrative on Self-care

Documented By: Dr. Rashmi Pachauri Rajan

Anchal is a transgender who has lived among the transgender community for over 25 years. Anchal always felt that she was a woman trapped in a man’s body. Even as a small child, she was very effeminate and her friends, classmates, and even her teachers often commented on her effeminate mannerisms. When Anchal was in Class 5, she began to realize that she was “different,” and began to perceive her feelings of effeminism more starkly—she liked to dress in girls’ clothes, wear makeup, loved to dance, and perform in women’s roles.

When Anchal entered high school, she got physically involved with a boy her age who had been adopted by her parents and was living with them. And around this time, she was propositioned for sex by the physical instructor at her school. It was also at around the same time that her family, particularly her mother and brothers, began to notice the stark differences in her behavior as compared to that of her brothers. Anchal loved to dance and perform on stage during local festivals and special occasions, and was known for her dances and acting in women’s roles. And coming from an economically relatively weak background, more and more her mother began encouraging her to perform, as it supplemented the much-needed money requirements of her family. Looking back, Anchal feels that by then most people—her family, friends, and even people in her neighborhood—knew she was transgender. But she still did not quite realize it, mainly because she was not, at that time, aware of or informed enough about what transgender really was.

However, as this realization began to dawn on Anchal gradually and she began to identify herself with the transgender community, she began to spend more and more time with them. She started living with them (and visiting her family on occasion). She began working, in the first instance, as a beggar at major road intersections and on local trains, as a lot of transgender in India do. By and by, she started doing sex work, till finally sex work, in fact, became her regular occupation.

It was about 25 years ago that Anchal got to know of and then became involved with the Humsafar Trust (HST), when the organization started in Mumbai, India. The Humsafar Trust was initially founded to reach out to LGBTQ communities in the Mumbai Metro and surrounding areas. It began with conducting workshops on issues of HIV/AIDS and human rights of LGBTQ, and it soon became evident that the trust would also have to work aggressively on the health and human rights of the community.

Anchal and her transgender friends used to come to the area where the current HST office is located, for tea and snacks at a small stall below the office building. In this process, they often met with the then staff of the organization, who would invite them into the office, chat with them informally, and, at the same time, provide them with information on HIV prevention and safe sex. Anchal subsequently started working with HST as a peer educator. She was an avid and eager learner and took to heart everything she was taught.

Between what she learned at HST and what she picked up having worked for a short while as a compounder/helper for a local doctor when she was in high school, Anchal has become extremely health and hygiene conscious. Her awareness of and information about the various aspects of self-care are high, be it related to the use of condoms, gels, or medication, including the use of antibiotics. For example, she is adamant about using condoms during her sex work, even often in the face of threats of violence from clients. She gets regular medical checks provided by various NGOs, including HST, and has HIV testing done every six months. Anchal does not consider affordability of medication or self-care products an issue. Her view on this is that “if I am unwell and something has been prescribed by a doctor and is not available or provided by an NGO, I will buy and use it, regardless of the cost, because I consider my health and well-being of foremost importance.”

Her self-care practices also include healthy and hygienic nutrition (“I cook my own food and drink only boiled or bottled water”) she detoxes herself with a glass of hot water and Chavanprash (a well-known and popular Indian Ayurvedic tonic) every morning. She uses some of the best branded makeup products because she feels they will not harm her skin and will enhance her looks—something that is very important for her as a sex worker. She keeps herself, her clothes, and her surroundings clean and well kept, and keeps herself protected from physical harm.

Anchal realizes that in her profession as well as in her community, violence is rampant and almost a given. This violence takes the shape of physical and sexual abuse, often from within the family, client-related violence, partner violence (sexual, physical, and emotional), police violence, and sometimes violence from members of the society who view transgender as “different,” lowly or frightening. With respect to police-related violence, Anchal says it has to be “managed” in that she and other transgender within a given “territory” make themselves known to the police in that area and pay them an allotted amount per month for operating from that area. Once a mutually beneficial relationship has been established, then the police become “allies” to an extent and do not bother the community. In fact, they actively protect them at times.

Anchal is now 48 years old and is a respected “guru” (an influential leader or teacher among the transgender community in her locality). She treats her 16 “chelas” (disciples or students—who are other transgender) as her own children, looking after their needs, safety, and often even helping them financially with transitioning, if required.

Anchal herself took a decision not to transition, for a variety of reasons. She feels that, having lived among the transgender community, she knows what difficult lives they lead, more so she feels, if they have transitioned. But an even more important reason for her having decided not to transition is that she “wants to return to God in the same form as God sent (me) to this earth.” She visits her parents regularly, and by now they know, and even accept, that she is transgender as well as that she is a sex worker. She supports not just her parents, but even her two brothers and their families (as both her brothers are alcoholics and unemployed) financially and emotionally. But even though her parents are aware of her transgender identity, given the society they live in, their culture and conventions, they would be embarrassed and fall from grace were it publicly known that one of their sons is transgender. To keep intact her family’s reputation and standing in their community, Anchal makes sure she dresses and behaves like a man when she visits them. Needless to say, this puts enormous emotional pressure on her and has, at times, led her to depression and anxiety.

Anchal has been in a long-term relationship with a man for over 20 years. For reasons beyond her control, her partner got married a few years ago. Given the strength of her relationship Anchal has with her partner, his wife and children (he has two) know about his relationship with Anchal. In fact, Anchal is accepted as part of their family and is referred to as “Big Mummy” by the children.

She is invited to attend important family functions and contributes to the family as and when required, financially and with respect to their seeking health and other advice from her on occasion. However, “it would be a lie,” she admits, “if I said my boyfriend’s marriage did not affect me. I went into a deep depression for weeks after it took place.” Anchal says she did not seek counseling nor consult a doctor for her depression. Instead, she turned to religion—she spent long hours in temples and mosques, praying and introspecting. And her “chelas” who care about her deeply helped enormously to get her out of her depression. This is strong evidence of self-help—in the form of social support systems from within the community! Another example of mental health self-care that Anchal discussed (though she admits she has not yet participated in nor initiated this among her community) is the formation of a WhatsApp (or other suchlike) group of like-minded and similar people (in this case, members of the transgender community who are there for each other as and when needed or in times of crises). Anchal admits that she consumes alcohol everyday (“I take no more than two drinks ever”), but says she has never smoked nor taken recreational drugs, as those, she feels, are harmful to health. The one thing that Anchal included in her self-care practices is a life insurance policy, which she says is very important for a person like her, if ever the need for it arose. It keeps her secure and ensures that she will not have to depend on anyone if she were to get sick or, even after her death, to take care of her funeral. It will also take care of her family after she is no more.

Anchal’s self-care quotient is very high, especially given her background, education (she is a Class 10 passed student), and that she is transgender. She believes, “If one takes care of oneself, then that will automatically lead to good health, which will result in happiness. Life is precious and beautiful and should be thus valued. And for us, because our earnings depend on how we look and present ourselves, health is everything. One should strive to be a role model for others, no matter what walk of life one comes from.”

3.3 Discussion

Sexuality was once considered an unimportant issue in the Indian social sphere. But now it is vibrant and political. There is a fight for the legal and social rights of lesbians, gays, bisexuals, and transgender which is supported by healthcare NGOs, human rights activists, and feminists. Together, they form contemporary India’s queer movement. Once a derogatory word, today queer is accepted as an identity signifying a sexual orientation.

Transgender experience their identity in a variety of ways and may become aware of their transgender identity at any age. Some can trace their transgender identity and feelings back to their earliest memories. They may have vague feelings of “not fitting in” with people of their assigned sex. Others become aware of their transgender identities or begin to explore and experience gender non-conforming attitudes and behaviors during adolescence or much later in life. Some embrace their transgender feelings, while others struggle with feelings of shame or confusion. Those who transitioned later in life may have struggled to fit in adequately with their assigned sex only to later face dissatisfaction with their lives. Some transgenders, transsexuals in particular, experience intense dissatisfaction with their sex assigned at birth, physical sex characteristics, or the gender role associated with that sex. These individuals often seek gender-affirming treatments.

Transgender usually live or prefer to live in the gender role different to the one they are assigned at birth. The preferred gender role may or may not be related to their sexual preferences. Transgender is an umbrella term that includes transsexuals, cross-dressers, intersexed persons, and gender-variant persons. Transgender can be “male-to-female” (MtF) or “female-to-male” (FtM), and sometimes referred to as “transgender woman/transwoman” and “transgender man/transman,” respectively.

The term used for transgender in India is hijra. An older name for hijras is kinnar, which is used by some hijra groups as a more respectable and formal term. An abusive slang for hijra in Hindi is chakka [13]. Hijras in Tamil Nadu identify as “aravani.” Tamil Nadu Aravanigal Welfare Board, a state government initiative under the Department of Social Welfare, defines aravanis as biological males who self-identity themselves as a woman trapped in a male body. Some aravanis want the public and media to use the term “thirunangi” [13]. Globally, transgenders are referred to as the third gender.

Hijras make their presence felt at marriages and births where they bestow their blessings. They are, however, a highly stigmatized community. Hijras usually live in large communities. The head of such a community is the guru. This community has a hierarchical guru–shishya (teacher–disciple) structure and exists as a parallel society within the existing Indian culture [14,15,16]. The akwa hijras are not yet castrated but are in preparation for castration after specific rites. These hijras are males who cross-dress or wear female attire (khada-kothis) and have joined hijra gharanas (adopted families) after leaving their biological families. The nirvaan hijras are ritually castrated men who are a part of ritual housing called gharanas. Jogtas are Hindu hijras who are male temple prostitutes [17].

However, with increased urbanization and changing societal structures in India, the traditional roles of these transgender have lost their importance. Consequently, many of the male-to-female transgender have become sex workers, particularly in urban centers such as Mumbai. They experience a high prevalence of STIs including HIV and have significantly higher number of sex partners [14]. Their health-seeking behaviors are often limited due to stigmatization in healthcare settings [15].

Health Problems

A transgender health assessment should involve recognition of possible gender identity disorder, history-taking with respect to prior and current use of hormones or surgical interventions, as well as general physical, mental, and sexual health histories. Physical and screening tests need to be based on the organ systems present rather than the perceived gender of the patient. Physicians should be aware of common hormone regimens and their associated risks. Finally, patients can best explore transgender issues in a setting of respect and trust in which confidentiality concerns are addressed, and clinic staff are educated about transgender issues [16].

The link between mental health disorders and discrimination has been established. The coming-out process for an older LGBT person, who has lived most of his or her life in a hostile or intolerant environment, can induce significant stress and contribute to lower life satisfaction and self-esteem. Managing social stressors such as prejudice, stigmatization, violence, and internalized homophobia over long periods of time results in higher risk of depression, suicide, risky behavior, and substance abuse. LGBT populations, therefore, may be at increased risk for these and other mental disorders. There is a high lifetime prevalence of mental disorders in LGBT persons [18,19].

Education, Employment, and Legal Rights

In India, most transgenders have little or no education. Consequently, they are usually not formally employed and are often forced into sex work and begging. On April 2014, the Supreme Court of India passed a landmark judgment reaffirming individuals’ right to choose their identity, as male, female, or third gender. The Supreme Court judgment which cites a UNDP India study in its verdict also instructed central and state governments to develop inclusive social welfare schemes and ensure greater involvement of the transgender community in policy formulation [20].

In India, hijras now have the option to identify as a eunuch (“E”) on passports and on certain government documents. The Election Commission forms now have a separate column “O” for “others” (transgender or hijras) in the voter enrollment and registration forms. Following in the footsteps of the Election Commission, the Unique Identification Authority of India (UIDAI) also recognizes transgender. Enrollment forms of the UIDAI have a third column of “T” for “Transgender” along with “M” and “F” for “Male” and “Female,” respectively [21].

Self-care among transgender has an important place in improving their health and their lives. Self-care is practiced by many transgenders, but there is considerable scope for improvement. Research is needed to assess how and in which areas self-care can be enhanced to improve the lives of transgender. Growing access to the Internet has facilitated the process of increasing self-care to improve the health and well-being of transgender.