The first part of the findings describes participants’ unique gender experiences and how they anticipated, experienced and internalised gender identity-related and HIV-related stigma. We then present data on how transfeminine and gender diverse women experienced stigma related to different and intersecting parts of their identity. The final part of the findings describes how stigma affects HIV service access (including testing, treatment and adherence support and services) for the participants and potential ways in which participants were able to manage stigma.
The transfeminine and gender diverse women in our study
Table 1 shows a breakdown of the participants’ pseudonyms, their age, ethnic group, language, identity category, HIV and health status, employment, as well as housing type, household income and household member structure and setup.
All of the participants reported being assigned male sex at birth and having feminine gender identifications, with predominantly feminine gender expressions. They used various feminine pronouns and gender expressions to refer to themselves. During data collection, only one of the eight participants identified as a transgender woman (Owen). The other participants had diverse ways of expressing their gender and sexual identities. Some of the participants, such as Stacey, Steven and Curella, for example, used the term “femgay” and feminine pronouns to identify themselves. Stacey explained: “femgay is me, twenty-four-seven, female-looking, female-acting, female me” (6 June 2016). Sizwe distinctly uses the term “MSM”.
Participants described fluid and diverse ways in which their gender identifications functioned in different social settings. They expressed their gender as feminine in most spheres of their lives, including in romantic and sexual relationships. However, they reported being addressed at times by their masculine, birth given names, mainly by family members and people from the community. Participants often used terms connected to their sexual identity (see Table 1).
All our participants are from urban study communities on the periphery of Cape Town city. Some of them live in detached houses on open pieces of land, others in shared farm labourer houses or in informal township neighbourhoods. All but one of the participants were Afrikaans-speaking colouredFootnote 2 people.
Participants had diverse household structures. Steven, Curella, Girlie, Georgina and Sizwe live with their nuclear families that included at least one sibling and one parent. These households often included extended family members like aunts, uncles and cousins who lived inside the house, next door or close by. Stacey and Patricia had more transient household structures, as they would often move from one house to another and struggled with familial ties. Owen and her sister lost their parents and are now living together and sharing their house with friends and peers who socialise there often.
The participants shared income with their household members, with combined household earnings ranging from ZAR 1500 to ZAR 9000 (which is about 100 USD to 600 USD). According to Statistics South Africa , in 2015, 30,4 million South African, or about half of the total population were living under the national poverty line of just below ZAR 1000 (about USD 67) per person per month. Considering that participants stayed and shared income with household members of 5 to 10 people (and sometimes even more), all of the participants lived under the poverty line. All had financial constraints and had experienced times when they didn’t have enough food to eat for them and their households. Girlie and Patricia would revert to sex work, whereas other participants relied on family, friends and peers to share income and food in times of financial hardship.
Four participants (Stacey, Girlie, Owen and Steven) disclosed that they were living with HIV. Owen was the only one who was taking ART consistently. Stacey and Steven reported having initiated but stopped using ART regularly. Girlie had never started on ART because of her health worker’s concern about her drug use. Patricia was also a consistent drug user and Steven had been to a rehabilitation centre recently because of her drug addiction. Steven has experienced several TB disease episodes.
Participants did not necessarily use terms related to stigma. Instead, we identified and labelled forms of stigma implicit in the participants’ experiences and dialogue. Below we discuss instances of anticipated, experienced and internalised gender identity-related stigma.
Gender identity-related stigma
Participants anticipated that revealing aspects of their gender identity or the way they live their lives might lead to negative consequences. For example, Girlie, was very concerned about exposing her gender identity to her family, who might find out she cross-dresses, and to her sex work clients, who might find out she is assigned male sex at birth if they approached her on the premise of being a cisgender woman.
Some participants also anticipated negative reactions around specific sexual partners, identified as ‘after-niners’ – These are men who are known to some in the communities they live as cisgender men who present publicly as ‘straight’ during the day, but who secretly indulge in sexual encounters with feminine gay and transgender women at night . For Sizwe, ‘after-nine’ partners potentially put her at risk of being exposed to stigma and discrimination, and so she anticipated stigma related to her gender identity when interacting with these men:
“Most of them are my friends, but also [have sex with] others, yes. But then maybe it is dependent on me and then if I am satisfied maybe with sex, then I don’t mind we continue. Even at the club if I see you, there’s no need to make it obvious. I do my own things and you do your own things but don’t make people look at us”. (Sizwe, 8 November 2016)
In an earlier discussion she explained that people often recognise her as a woman:
“When I come through they see a lady, so not unless uh not unless I show my ID or something that shows I’m a male, then they will be shocked” (Sizwe, 8 November 2016).
Sizwe anticipated a negative reaction in terms of shock or surprise in someone’s demeanour. For other participants, this anticipated negative reaction to their gender identity might be fear of a verbal insult or physical attack, as Conry explained:
“But if you walk around here, then you’ll: “Aye look at THAT moffie and what and so and so”. (Conry, 29 August 2016).”
All participants could recall having had negative experiences of stigma and discrimination due to their gender identity and gender expression at some point during their lives. Girlie described experiencing stigma and discrimination from young men and gangsters who would emotionally and physically abuse her because she presented herself as a woman. For example, in one incident, she was assaulted by young boys in an open field. The boys hurled insults and threats at her, like “Look, there goes that moffieFootnote 3”, and “Let’s go and rob him”, and then they chased her and beat her up. The other sex workers (who are cisgender women) also got angry when clients were interested in Girlie, and she told us they would sometimes instigate assaults on her.
“Yes, then those girls maybe say: ‘I don’t like that thing [Girlie]. That thing takes all our ‘ways’ [potential partners] away from us and so and so’ ... then those [women] will probably stay down here and work other people up to hurt me” (Girlie, 4 August 2016).
Participants also described experiencing verbal abuse linked to their gender identity, including being called derogatory names and insults such as “moffie”, “moffie fuck”, “that thing”, “fucked through the ass” and “stabane”.Footnote 4 There was evidence that stigmatising terms participants were called affected them negatively. Steven, in particular, explained how her father would want to buy her a toy car instead of the doll she wanted when she was young. She seemed to connect some negative attitude to it, as she explained that she knew that she “wasn’t right” or normal.
In addition to gender identity-related stigma, participants’ narratives also included examples of HIV stigma. All four participants who disclosed they were living with HIV explained that they had anticipated and experienced stigma related to their HIV status. Many of the experiences of HIV-related stigma were interconnected with their gender or sexual identity. In a discussion about people who she has told about her HIV status, Girlie anticipated everyone to believe that she was living with HIV, although she had not told anyone except for one close friend:
“No I didn’t tell everyone, but you know how people are, right? They like to tell it over [gossip]” (Girlie, 31 August 2017).
Stacey said that her HIV status is a “state secret” that she only shared with a close friend. She reiterated the secrecy of her HIV status throughout the visits. Negotiating her undisclosed HIV status was always a challenge for the research team, as it was unclear who might know or who might not know her status. This meant that the research team had to keep her secret of living with HIV from others. Below we show an example of how Stacey anticipated stigma related to her HIV status (14 September 2017):
Researcher: Why don’t you yet want to tell people? [about your HIV status]
Stacey: [Breathes in deeply] Well, I think if you tell people then they l-look at you differently they treat you differently. You get your own plate, you get your own mug, your own fork, your own spoon, your own everything.
Three out of the four participants living with HIV (Steven, Girlie and Stacey) had disclosed only to one or two close friends or close family members and not to anyone else. Almost all the participants had experienced people in the community speaking in a negative and stigmatising manner about people living with HIV, as reflected in the following conversation with Georgina’s aunt:
“Because in the community it is just like this. If you are HIV positive, then you are bad” (Georgina’s aunt, 10 August 2017).
Curella also explained the different ways that a person living with HIV might be labelled and stigmatised by community members:
“There are these nicknames for HIV, it will be Aunty VeraFootnote 5or groot griep [“great
fluFootnote 6”]. Those are the names that are used” (Curella, 11 August 2017).
Multiple barriers to care
Our narrative analysis highlighted that our participants have intricate lives in which multi-layered social identities further complicate how they anticipate, experience and internalise stigma. HIV stigma and gender identity stigma often overlap, as Stacey explained:
“People think in general, uh, that people like us, my sort, are those people who spread the virus. And it’s not what I feel, but what I know; I have heard it. Not for me, obviously, but talking about someone else” (Stacey, 26 October 2016).
Apart from their gender identity, all of the participants were also faced with stigma and discrimination related to other parts of their social identities like same-sex sexual orientation and sex work. Girlie’s brother explained how, despite caring about her well-being, he doesn’t agree with her way of life. He also referred to her as a man and not a woman:
“It is almost like this, the way how he is, almost like this. I am not really turned against it, but the things he does isn’t right for me ... this that he now has ‘n “berg” [boyfriend] and what what. It isn’t right, I am turned against it” (Girlie’s brother, 24 January 2017).
Our interactions with participants over the duration of the cohort helped us understand the complexities of their stigmatised lives. Steven and Stacey had to navigate stigma related to their feminine gender identity as well as potential stigma related to living with HIV. For Girlie and Patricia, intersectional stigma could be very complicated. For example, they both are assigned male sex at birth but identify as women, identify and are stigmatised as homosexual men, do highly stigmatising work (sex work), have been incarcerated, use drugs and live very transient lifestyles. For Girlie, this intersects further with stigma she experiences related to her positive HIV status.
How stigma affects HIV service access for participants
All participants, especially the ones who disclosed to be living with HIV, described staff at the local health facility that were accepting and open towards their gender identity. Despite this, health facilities were highly stressful and potentially stigmatising spaces for participants, as people could see that they accessed specific HIV services, like counselling rooms or clinic pharmacy windows. Stacey, for example, was really distraught about accessing ART services at her local clinic:
“Because the silly/ridiculous fact that you have to walk to the clinic and have to go in at a specific room, is already a hold up for me. To stand caught up because then I must first look who else is at the clinic and who will now see in and that. (Stacey, 26 October 2016)
Owen avoided testing at the clinic initially, even though she felt sick at times,
“I was too scared of what they were going to say, what they going think of me and how my reactions would be when I get out of the clinic because most of the people will see on your face that ‘oh he’s HIV positive or oh no he’s not’, you see” (Owen, 5 September 2017).
Stacey and Steven have both been living with HIV for a couple of years and they often struggle with taking ART consistently. Both of these women experienced barriers to HIV services in terms of treatment uptake and sustained treatment because they anticipated experiencing stigma if their HIV status became known. Stacey and Steven struggled to stay on their medication, as none of their household members were aware that they are living with HIV. They therefore tried to secretly take their medications and hide their pills from household members, as Steven explained:
“My pills are in their original container but I once wanted to throw it in a bag so that it doesn’t make such a noise when I drink my pills in the evenings” (Steven, 14 September, 2017).
When Stacey was on medication, she used to hide her medication under her bed. She described that:
“Usually I pull off the sticker [label] with my name on, because if you throw the container away, everyone knows what this bottle looks like, right, and what pills go in it, so if they see my name on it then my secret is now out” (Stacey, 26 October 2016).
The personal and social lives of participants made it hard for them to stay on their treatment. For example, when Steven was out socialising and drinking, she would not take her medication, and similarly, when she was sleeping over or if she was away for the weekend with friends she would choose to not take her pills with her.
How participants coped with stigma
Participants mentioned becoming accustomed to experiencing stigma related to their gender identity. Below, Curella explained what it was like growing up identifying as different than her assigned sex at birth:
“Eh it was rather a bit heavy. Not heavy but [pauses] if I’m with children, especially when they make remarks. Then I did feel rather bad, because [pauses] they would call it [make remarks] like that non-stop. That’s why today I now, I don’t worry about it anymore, because I know this now already [have become used to the remarks]. It has been coming on for years now, but that time I did [worry] a bit, because I was in my shell, very quiet still [pauses] withdrawn (Curella, 29 August 2016).
Despite the participants becoming accustomed to negative reactions from people in their communities, we found that social support often counteracted negative reactions towards participants’ gender identity. This included social support and acceptance from a broader community, internal social networks like family and friends, support organisations and social support from peers and friends within their close communities. When it came to acceptance from the broader community, participants explained that, with time, community members were able to better accept them. In a way, people became used to and accustomed to the participants living in the community, as Georgina and Curella explained:
“As I became more involved in the community, people started to love me for what I am” (Georgina, 17 May 2017),
“They [the community] understand, And I realised that they are now used to me.” (Curella, 11 August 2017).
Apart from the community members in general becoming more accustomed to the participants’ gender identity, social support within the participants’ inner social networks also seemed constructive to their social well-being. Below, Georgina’s family member explained:
“It’s just plain and simple. He feels he wants to be that person. The lord created him ... the lord created us, right? He didn’t ask to ... he was like that from a young age. He didn’t ask to be a moffie. Like he has female hormones” (Georgina’s family member, 17 August 2016).
Sizwe explained that her mother supported her the most when she was still a child:
“Because she saw me from the start that I liked girl things. So she had to buy those things and when I said “mom, I want this” she would buy it .. whether a dress or ...” (Sizwe, 8 Novemebr 2016).
Steven also experienced positive support from her family:
“My parents were now very ... they had very open thoughts and they are very open-minded. They accepted me just as I am ... actually it was never necessary for me to tell them. They knew” (23 August 2016).
Other social support was also provided by organisations within the community regarding stigma related to gender and sexual identity. Two participants, Patricia and Simone, described receiving support from local non-profit organisations that offer emotional support and treatment services for the Lesbian, Gay, Bisexual, Transgender, Queer and Intersex (LGBTQI) community:
“I joined where everyone, where the lesbians and the gays and the bisexuals and the transgender people can meet each other and where we have a safe space here in this area/community” (Simone, 29 September 2016).
Participants also described the supportive nature of close relationships with peers and friends who also have fluid gender identifications. Curella, Stacey, Steven and Simone are all part of a small sub-culture of feminine-bodied men who take part in cross-dressing modelling shows. This community is supportive of one another and enables people to cope with shared experienced stigma related to gender identity. Curella explained that these modelling shows instilled courage in her to walk in front of others and show off her ‘true self’. She also explained that these shows created a sense of community amongst peers and friends who clearly are not always accepted for who they are:
“I think it’s a good thing tha’ more people can know [pauses] that, how can I say, that more people understand what it’s about. Because a lot of people don’t get used to the idea that gay people exist or so” (Curella, 11 August 2017).