1a. Experiences started before reaching the health system.

Intersectional aspects of being a transgender person made it difficult to access healthcare even before reaching the health system. Many transgender people lost the support of their natal families. Where they did have support, it made a big difference in their access to care as well as in their general life choices. Within healthcare the use of correct pronouns by a parent made a positive difference.

I have never faced any sort of gender discrimination because my family has always supported me. There are many transgender people who don’t get family support or are thrown out of their homes or are treated very badly–P43, A transwoman from Central India

She would use the pronoun “they” in front of the doctor. That really took some burden off my shoulders. –P16, A transmasculine person from South India

For those who lived away from their natal families, friends, community-based organizations, and other kinship structures, such as the dera or gharana system, were their sources of support. For people living in the dera system, their access to care depended on the ability to get permission and support from the guru. Thus, the form of kinship support is a crucial aspect of each person’s intersectional identity.

Community support is something I really believed in since the time I was in college.–P23, A gender fluid person from Northeast India

If my friend wasn’t there, I wouldn’t have been able to access all these mental healthcare, trans healthcare options.–P20, A transmasculine person in an FGD

Yes, we get permission. They [Nayak/guru] never refuse and if there is any problem, they come along with us to the hospital, also.–P27, A kinnar person in an FGD

Decisions on which doctor or healthcare center to visit were made very carefully because there was hesitation to try new doctors who were not known directly or indirectly unless it was an emergency. And for many it was based on referrals by others trans persons in their social networks.

Other trans people said, “we go to him. And he’s okay. He’s fine. He’s cool.” And that’s how I heard his name… I always prefer visiting [health professionals] on the recommendation of fellow trans people”–P49, A transwoman from Eastern India

‘Travelling to the health center was also a challenge because of experiences of stigma en-route to the hospital. This stigma was felt not only by verbal remarks made by other people but also by the general body language of people that reflected their attitude. For example, many participants spoke about the way people look, stare, their ‘gaze’, and laugh, that made them feel uncomfortable. This was also determined by how ‘visibly trans’ someone is (explained later).

If you walk on the road, people will identify you as a trans person… a lot of people have myths and misconception. Either they are afraid of transgender, or they have pity, or sympathy.–P66, A transwoman from North India

1b. Experiences in cis-binormative health systems.

Within the healthcare system there were several positive and negative experiences. Almost all the participants we interviewed had at least one negative experience to share. Some of this was related to the health system, while others were with individual healthcare providers.

Many hospitals require service users to provide an identity card for registration. Despite recent legislative changes and numerous initiatives, transgender persons spoke of challenges in getting legal documents that match their gender identity. Lack of gender concordant identity documents resulted in problems at the registration. Gender discordant ID cards forced participants to share their trans identity to health professionals, some of whom were insensitive about it, for example, by laughing. Lack of ID cards sometimes led to denial of care. One participant shared about how she was asked for an ID proof only after the healthcare worker realized that she is a trans person.

I was asked for an ID proof. I said, “why do you need ID proof to provide a medical treatment?” … After arguing for 10–15 minutes the doctor plainly denied seeing me.–P18, a transwoman

When the [Nurse or Doctor] used to see that our identity proof is on a male name… they used to giggle among themselves. There used to be a lot of misgendering–P16, A transmasculine person from South India

The way hospitals and clinics are structured is often exclusionary to transgender people. Participants shared their feelings that the hospitals “don’t expect a trans person” to come. This is because most hospitals segregate most spaces based on the gender-binary of male and female, thus excluding people who are non-binary or don’t appear to fit within the norms of the gender expression in the binary. The spaces inside the hospitals include wards, outpatient clinics, waiting rooms, washrooms, and queues in registration. When transgender people arrive at such binary spaces there is confusion about which side to go to because of chances of being told they are in the ‘wrong place’ even when they identify in the gender binary. Registration forms are also usually limited to male and female without a separate transgender, non-binary or other column. Furthermore, specific specialties such as gynecology is normatively designated for cisgender female patients only. One participant spoke of hesitating to go to hospitals because of such issues.

If I go into the men’s washroom, I can’t go with a saree. If I go into women’s washroom, my voice gives it away–P40, a transwoman from North India

“One transman spoke about how a gynecologist joked that once he transitions completely, he won’t be allowed to the gynecology clinic which made him feel uncomfortable and unwelcome. This shows the deeply gendered norms within specific medical specialties.

I also informed [the gynecologist] that I am going to be transitioning and taking the injections. She laughed and made a joke about it and said, “Oh, so the next time you come here, you won’t be allowed, because then you will look like a man.” That just made me feel uncomfortable and unwelcome there.–P16, A transmasculine person from South India Some participants questioned this cis-bi-normative model and suggested alternatives such as asking the patient which ward they would be comfortable in, where it is binarily gender segregated. There have been few examples of hospitals and clinics where segregation based on gender is avoided, or there are separate queues for transgender persons or are exclusively for transgender persons. But in most places when a transgender person visits, there is confusion, neglect, and discrimination. The experience also depends on how ‘visibly trans’ someone is as seen earlier. Being able to pass as cisgender persons made it easier which is linked to one’s gender expression, body and social norms. This is another intersection in identity that is crucial to defining a transgender persons experience in healthcare.

In the in-take form itself hospital should ask, which wards they are comfortable in.–Transmasculine person in an FGD

I quite like the way that [name of a renowned institution] has structured the inpatient wards … there is no gender segregation of the washrooms–P64, a transwoman from South India

[Hospitals can have] segregated sections for every patient. [so that] every patient is guaranteed their privacy—whether it be using curtains or makeshift walls.–Transmasculine person in an FGD

However, one transwoman spoke about how her ability to pass as a cis woman made her more anxious as health professionals never realize she is a transwoman with unique health needs. Therefore, she felt it might be easier for her if she was not so cis-passing and looked more gender fluid or non-conforming.

If I was less passable as a woman and appeared more as gender fluid or as non-conforming, perhaps the level of anguish I would have gone through would have been lesser.–P1, a transwoman from Western India

1c. Experiences with individual practitioners, support staff and bystanders.

After crossing the hurdles in how hospitals are designed, then experiences with individual practitioners are a major challenge. This included neglect. While some trans participants were neglected by denial of care even before getting to see the health professional, another transwoman activist was asked to give sponge bath to a trans patient admitted because the nurse said that they are not comfortable “doing such things”. This indicates neglect and exclusion of trans persons by health professionals because of stigma.

The watchman never used to allow us to sit also. And they shoo away the people like that.–P66, a transwoman from North India

The nurse will not even touch your body because they feel it is obnoxious to touch a body of a trans person. So, they used to call me for some patient saying that “please come and give her the sponge bath” and I usually say “why can’t you give it? You are a nurse you should be giving”. Then they say “No, no, can you do it please? You will feel more comfortable doing it. People like us don’t feel so comfortable doing such things”–P66, a transwoman from North India

Consent while doing invasive procedures, such as per-vaginal examination, and privacy was a challenge for many participants. Many trans women spoke of experiences of being asked to undress without the presence of female doctors or nurses. A transman in an FGD spoke of how he felt uncomfortable undressing in front of male nurses but was forced to do it. This suggests the need for understanding of different trans identities and the need for sensitivity when during invasive examinations.

[When asking to undress] the [male nurses] would shout saying “You are a boy, aren’t you? Then why are you shy?” So, that was very uncomfortable for me. So, I didn’t do it. But they kept pushing saying “uthao, uthao, uthao… [lift, lift, lift]”. And there was no woman around. I was not very comfortable with it, but I had to do it.–Transmasculine person in an FGD

I was asked to undress in front of a male doctor. And it was very traumatizing experience for me. I kept asking for a female doctor. But they did not give me–P66, a transwoman from North India

Participants spoke of different forms of abuse: financial, verbal, and sexual. Trans persons were financially abused by overcharging. Another participant was denied care after being charged an unusually high consultation fee.

When the trans person comes to the hospital setting, there is always a fleecing of money. Like, immediately, another 500 rupees will be added”–P40, a transwoman from North India

Verbal abuse occurred during registration and other points of waiting. Sexual abuse was through inappropriate advances, remarks and touching. One participant spoke about how this made her feel that she was an ‘untouchable’ which is a word referred to Dalit persons who are an oppressed caste group in India. Transgender persons felt discriminated from cisgender patients.

There was an argument between the nurse who [said] “aap logon ka bhi insurance hota hai—kya chutiyapanti hai?” [Do people like you also get insurance—What atrocity is this?]–P12, transwoman, North India

There have been instances when I was physically abused, as well. There have been instances like people staring, passing weird comments, saying words [that are] derogatory, calling out names loudly, using physical [advances], or trying to take advantage. So, is it really like I’m an untouchable human being?–P18, a transwoman

There have been instances where I have been sexually given passes through winks, or through touches, which was inappropriate.–P12, transwoman, North India

Experiences at the individual level were not just limited to doctors and nurses but all the staff in the hospital. In addition, there were experiences from other patients and bystanders, especially in government hospitals.

We try to avoid public health systems because of the judgments that we face over there: how health care providers judge you, ask awkward questions right from the time when you enter the health system; including the watchmen, the nurse and ward boys.—P66, a transwoman from North India

While you are waiting in the line its quite an embarrassing situation where people are looking at you. They are passing comments, they are making gestures, which are not appreciable to you. [There’s] always this feeling that somebody is talking behind you, and you feel uncomfortable about it.–P66, a transwoman from North India

Participants shared about feeling surprised on realizing that health professionals did not understand transgender identities and the medical transition process. For example, one doctor did not understand the difference between a vagina created surgically (neovagina) and a vagina by birth (P66). This showed that the medical curriculum does not cover transgender health topics sufficiently. A transmasculine person shared about how it is expected that health professionals don’t know about transgender lives as society defines being cisgender and heterosexuality as the norm. A transwoman activist and public health professional spoke about how “it is not their fault as it is not there in the syllabus” (P12).

We all have grown up in a cis normative society, where cis is the “normal”, cisgenderism is normal, heterosexuality is the normal. So, people just don’t know better. We need more accessible, inclusive curriculum system for our future healthcare professionals. The doctor doesn’t know better because they didn’t study those things when they were students. Transmasculine person in an FGD

Since health professionals often did not understand what it means to be a transgender person, they tried to learn about transgender lives during their interaction with transgender patients which ended up dominating that interaction. Both of this resulted in communication that was often felt to be intrusive and insensitive by transgender patients. One transmasculine person shared about how they feel quite frustrated about having to explain their gender every time they share about their gender with a doctor.

When people realize your identity is that of a transgender woman or that of a transgender man, there is a certain level of, there is a high level of inquisitiveness. Now, whenever there is inquisitiveness, it always borders on your right to privacy.–P1, a transwoman from Western India

I don’t have to sit and explain to the doctor about what my gender is… So, every time I go to the doctor, it’s almost like I am doing a gender-sexuality session. And I don’t think that is something I want to deal with.–P50, a transmasculine person from North India

In all these experiences, other identities of the participants made a difference in the kind of experiences they faced within the health system. On one hand, some identities helped in accessing better healthcare such as high income, being English-speaking, educated and having connections with doctors. On the other hand, other identities made the experience worse such as having a disability, being of lower caste, minority religion and of being a migrant.

I can speak English and I am educated… [this] sort of makes it easier for me to navigate the power relationship between the doctor and patient–P15, A non-binary trans person from South India.

…My father is in defense. So, he had this respect that, “this is our officer”–Transmasculine person in an FGD.

3.1. At the interpersonal level.

Transgender persons navigated these negative experiences by taking up measures that are also across different levels. At the individual level many of them would visit healthcare centers without disclosing their trans identity (cis passing). This would make the experience gender dysphoric but would help avoid the negative experiences they would have faced as a ‘visibly trans’ person. The choice also depends on the urgency of the healthcare need; with people choosing to cis pass if it’s a more urgent healthcare need.

When I pass as cis-gendered, everyone is just like–‘don’t really care’. Everything goes on like for any other person… If it’s an urgency, then I pass off as a cis identity. But if it is not a life-threatening issue, I usually present myself as a trans identity–P18, a transwoman.

Others took an attitude of quite resignation and self-blame. Others avoid certain kind of health care facilities where the experiences may be worse. This response was also intersectionally determined. For example, trans persons who had digital access and networks spoke about how they feel more comfortable with accessing healthcare digitally and via telephone (P53). A trans person from ethnocultural community chose to endure the negative experiences.

Most of the doctors do argue with us. But we can’t say anything to them.–P55, a kinnar person from Central India

I completely avoid government healthcare systems now.–A transman in an FGD

To decide between avoiding, postponing, and enduring, transgender persons balanced between the possibility of discrimination at the healthcare setting with the potential of irreversible harm due to a worsened health condition.

I choose the possibility of discrimination over irreversible harm. I have to choose the lesser evil, although mentally it’s difficult.–P49, a transwoman from Eastern India

3.2. At the health system level.

At the health system level, the measures included taking action to demand attention, for e.g., by clapping loudly or raising one’s voice. The distinctive clapping of hands is a characteristic gesture of various ethnocultural transgender communities in India–often to announce presence [35]. In this context, the clapping was not just them speaking out about mistreatment, but an assertion and a demand as a kinnar person. Thus, the response to lack of access was also linked to the intersectional identity of belonging to an ethnocultural community and the need to bring attention to that identity to able recognition for health access.

If they ask me to stop and get in line, all I do is say “I will clap loudly” and after that they don’t stop me.–P5, a kinnar person in an FGD

Others navigated by going with a friend or as a group. In an FGD with kinnar transwomen, participants spoke about how they merely decide to go to another health facility if they don’t like the services.

They are clueless and so we go as a group.–P2, a transwoman from South India

If we don’t like the services received in a hospital, we go to another hospital.–a kinnar person in an FGD

Few trans persons spoke about the importance of making efforts to educate the health professionals, especially participants who were educated themselves. Some participants shared about how doing this is quite challenging as it takes time away from the health consultation.

But when there is an occasion to be able to explain to them what being a trans person is and what they should be addressing me as that I make that effort because I think it’s important to do that as well to bring about change.–P36, a transmasculine person from South India

If my community is misgendered, my community is the first person to lift their saris and to clap and abuse them rather than educating them.–P12, transwoman from North India

When you try to tell them “Don’t use that name”, or “don’t address me with those pronouns” instead of having the conversation about your illness, it turns into a moral policing conversation.–A transmasculine person in an FGD

3.3. Outside of the health system.

Outside of the health system, transgender persons, especially those who were activists themselves, resorted to advocacy using the Right to Information Act, 2005 (RTI), through the courts as well as by meeting specific senior health officers and policy makers. Under RTI Indian citizens can seek information from under the control of government authorities [36].

I’ll file an RTI somehow… And with two, three… we build pressure.–P2, a transwoman from South India who is an activist

So, we had to file a case against them–P2, a transwoman from South India

So, [a transgender person] had to do a lot of advocacies to try to meet multiple people, senior hospital staff, all the way to the health minister… after a lot of struggles one bed was allotted in a hospital for trans patients.–P36, a transmasculine person from South India