Introduction

Thailand was the first country in Asia to respond to HIV as a public health issue and not as a moral one. In 2004, the Office of the Prime Minister incorporated HIV in to its portfolio and gave it a priority that allowed Thailand to avert a major epidemic among its general population. Yet, while the Thai government was mounting its 100% condom-use program for the general population, and targeting venues of sex workers, it largely overlooked rising rates of HIV among same-sex-attracted men and transgender people (Baxter 2006). There was reported government resistance in response to a Thai/US Centers for Disease Control Bangkok MSM Cohort study that provided proof of a rising Thai-to-Thai epidemic among same-sex-attracted men from 2003 to 2007 (van Griensven et al. 2010). The government remained adamant that HIV among Thais was caused by Western-Thai sexual activity, often in the context of sex work (Baxter 2006). This ambivalence, in addition to constant changes to elected or non-elected governments, is thought to have delayed an effective Thai response to HIV among same-sex-attracted men and transgender people (Baxter 2006).

By 2007, the Thai Ministry of Public Health initiated a programmatic HIV response to same-sex-attracted men but, congruent with the international trend, it largely excluded same-sex-attracted men and transgender people living with HIV (PLHIV) from HIV prevention programming through civil society. This meant that national policy architecture for same-sex-attracted men and transgender people embedded an inequity along HIV serostatus lines (Baxter 2006). Funding would be made available to HIV-negative same-sex-attracted groups to keep them HIV-free. But according to activists interviewed for this research study, very little, or no funding was provided for community-based programmes for same-sex-attracted men and transgender PLHIV. Note that national funding was available for HIV anti-retroviral treatment but not to fund community-based services for this particular group of PLHIV.

This programmatic inequity became the durable, defining signifier of difference and discrimination for networks and self-help groups made up of same-sex-attracted men and transgender PLHIV in Thailand. HIV serostatus stigma became deeply emblematic of the personal injustices they experienced in social and sexual contexts and in community groups and networks of same-sex-attracted men and transgender people that had been funded for HIV prevention or to keep HIV-negative people HIV-free. This shared experience of HIV-serostatus inequity became a catalyst for imagining same-sex-attracted men and transgender PLHIV as a group connected by shared challenges. They were facing a unique kind of indifference deeply threatening to their lives and health (Herzfeld 1992) and need to organise in groups to challenge it. This article investigates what study participants said about the ways they challenged these inequities and examines the deviance disavowal strategies they deployed to reduce them.

Literature

This section of our article presents the literature on stigma and on sex-, gender- and HIV-related stigma globally and in Thailand. It introduces the concept of deviance disavowal and explains it. Seminal work by Erving Goffman defined stigma as “the situation of the individual who is disqualified from full social acceptance” because of “an attribute that is deeply discrediting” (1963), which infers social disgrace and a “tarnished… place in society” (Genberg et al. 2008). Stigma is reported “at multiple levels, including the interpersonal, institutional… and legislative levels” and results in social “isolation, physical and verbal abuse, and denial of services and employment” (Pulerwitz et al. 2010; Parker and Aggleton 2003). Since HIV was first identified in the West in the 1980s it has been associated with disparaged social phenomena such as sex work, drug use and homosexuality, resulting in indifference to and inaction towards the plight of those living with or vulnerable to HIV (Kang 2015; Herzfeld 1992; Patton 2002). In recent international literature the focus has shifted to the social intersections of stigma, the aetiology of which emerges from the concept of ‘double stigma’ associated with having two illnesses such as HIV and TB (Daftary 2012), HIV and hepatitis C (Owen 2008), obesity and mental illness (Karasu 2011; Mizock 2012), HIV and being gay or a same-sex-attracted man (Grossman 1991), and HIV and transgender identity (Operario et al. 2014).

Important to this article is the published literature about stigma and the ways stigmatized people minimise the negative effects of perceived social disgrace (Meisenbach 2010) by means of stigma management (Goffman 1963). In the early literature about stigma, Fred Davis introduced the idea of “deviance disavowal and the possibility of breaking through social stigma” (1961). Breaking through was described as a series of social strategies deployed by a stigmatized individual to change the way others perceived the individual, to diminish the sense of difference that others perceived in the stigmatized individual (Davis 1961). Davis described the mechanism of breaking through as “a redefinitional process in which the handicapped [here, stigmatized] person projects images, attitudes and concepts of self which encourage the normal [here means the not disabled person] to identify with him [sic]” (Davis 1961). In this way, the stigmatized individual “disavows the deviancy latent in this status” and the ‘normal’ comes to normalize (i.e., view as more like himself [sic]) those aspects of the other which at first connoted deviance” (Davis 1961). We want to further explore this concept of deviance disavowal as it applies to same-sex attracted men and transgender PLHIV in Thailand. But first, we explore the literature on sex-, gender- and HIV stigma in Thailand specifically.

Social discourse about HIV in Thailand has positioned people living with HIV as bound up with corrupt and immoral external post-colonial forces, the anathema of Thai-ness, and a threat to “the ethical fabric of a [Thai] society” (Veijajiva 2011). In that discourse, the risk that HIV poses cannot be separated from its perceived risks to the purity and innocence of Thai culture and society itself (Douglas 2002). HIV, prostitution, drug use, homosexuality and biological Thai men living as or dressing as women have become subsumed in the Thai public discourse about moral and social corruption, in which urban tourist precincts, frequented by Caucasians, have become the focal point of Thai moral concerns (Staiff and Ongkhluap 2012). These discursive mechanisms produce a social indifference that acts as a barrier to health seeking for HIV (Herzfeld 1992; Plummer and McLean 2010). These narratives reveal some of the ways that nationalism is used to stigmatize same-sex attraction, transgender people, sex workers and other groups associated with HIV.

Nationalism and its uniformities took hold across Southeast Asia in the twentieth century, heavily influenced by Cold War-era politics (Anderson 2004). In multiple Southeast Asian countries, the good citizen/subject was constructed and presented as someone who obeyed law and order, respected family and community and observed the moral precepts of the national religion (Day and Maya 2010). At that time, the newly formed nation of Thailand required of its citizens a homogeneity and conformity to a long-standing yet newly articulated concept of Thai-ness, which was in stark contrast to the more diverse concepts that had been the hallmark of the Tai city-states that preceded it (McKinnon 2005; Terweil 2005). To be worthy of inclusion in the ‘we’ of Thai-ness, anyone aspiring to ‘good Thai-ness’ was required to conform to a set of prescribed ideals (McKinnon 2005). Thai nationalism demanded fidelity to a shared sociocultural, linguistic and spiritual unity; and subjection to the three pillars of Thai nationalism, which included race (in Thai: ชาติ or châat), religion (in Thai: ศาสนา or sasanãa) and King (in Thai: มหากษัตริย์ or mahakasat) (McKinnon 2005, 37, Alagappa 2004, Mulders 2000, Mulders 1997).

For example, the concept of a reified ‘good’ Thai citizen/subject is inculcated among Thai citizens from childhood onward (Hamilton and Mahalik 2009; McKinnon 2005; Mulders 2000). Being a ‘good’ Thai citizen/subject means respect for the King and the Thai royal family, which is replicated in attitudes toward one’s own father, mother and to family and social elders. It means compliance with Thai Buddhist precepts and rituals, as well as to following their religion through a commitment to ‘goodness’, morality and virtue. Doing good, caring for others and living a moral and virtuous life are essential characteristics of ‘good’ Thai-ness.

The impact of nationalist discourses for minority groups in Thailand has previously been investigated in the literature as it relates to ethnic minorities and hilltribes (Hamilton and Mahalik 2009, p. 82; McKinnon 2005). Katherine McKinnon argued that pejorative views of hilltribe people such as “the problematic troublemaker, the potential drug trafficker” and “the criminal” impeded success in seeking Thai citizenship (2005). “In the discourse” surrounding the seeking of Thai citizenship “one cannot be both Thai and a criminal” or Thai and engaged in activities considered to be morally reprehensible (McKinnon 2005). In response, hill-tribe activists sought a place for hill-tribe people “within the definition of the ‘good’ Thai subject position of nationalist discourses” (McKinnon 2005). But the literature has not explored nationalist discourses and their impacts on sex-, gender- and HIV-related stigma in Thailand.

The majority of participants who had been seriously ill from HIV in this study had delayed diagnosis even in the presence of significant illness, pain and disability. They experienced deep shame about HIV and were afraid to speak out or to access their rights to health within the Thai health system. One hypothesis about this is that HIV diagnosis, in the context of living as a same-sex attracted man or a transgender person, positions the PLHIV at odds with the concept of good Thai citizen/subject. It disturbs national identity and challenges an individual’s self-concept as a ‘good Thai’. HIV diagnosis while being associated with groups at odds with ‘good Thai-ness’ may dislocate Thai same-sex-attracted men and transgender PLHIV from their connection with other Thais. This means that the moment of diagnosis with HIV may be experienced as a point of disconnection from Thai social values that makes a Thai citizen a part of the ‘we’ of Thai goodness. HIV diagnosis can deeply disturb the personal lives and the Thai social worlds of people living with HIV (Howard 2014). Therefore, HIV diagnosis may lead same-sex-attracted men and transgender people with HIV to believe they are of less value to Thai society and unworthy of rights as Thai citizen/subjects.

Collective action in the international literature has revealed how HIV-affected communities or community action for HIV can have a positive impact on health outcomes and social attitudes about HIV (Beaglehole et al. 2004; Ghose et al. 2008; Friedman et al. 1987). The subsequent research on intersecting sex-, gender- and HIV-related stigma, aims to gather evidence about how people affected by multiple levels of sources of stigma can maintain their HIV health, their wellbeing and their human rights (STRIVE 2012; Zou et al. 2012; Parker and Aggleton 2003). Related to this is the literature on resilience and sense-making for chronic illness (Charmaz 1990; Bury 1991; Williams 1994). For example, Gareth Williams spent a considerable amount of his professional lifetime exploring the ways people living with arthritis understand and imagine the causes and make meanings about their arthritis. He demonstrated how people living with chronic illness create meanings about their condition through “narrative reconstruction” and a process he termed the “narratives of illness” (Williams 1994). This was important because his pioneering work presented a new way of seeing illness, beyond “risk factors” and beyond the dominant paradigms of research on illness of the time (Rees Jones 2018).

Finally, to bring all of the research in to context, there is a plethora of Thai research that investigates how Thais living people with HIV form self-help groups to learn, share knowledge and manage social problems (Liamputtong et al. 2009; Liamputtong and Haritavorn 2014; Tanabe 2008). This article has drawn from a broader research study that sought to answer the question “Why do Thai same-sex-attracted men and transgender PLHIV form collectives after diagnosis with HIV?” The goal of the study was to develop an understanding of the meanings and uses of collectives of same-sex-attracted men and transgender people living with HIV (PLHIV), based on the stories that participants told and the collective sense they made about living with HIV while being same-sex attracted or living as transgender people. The article fills a gap in the literature because there has been so little research on the lives of same-sex attracted men and transgender PLHIV in Thailand. It fills gap on sense-making through story-telling and collective action by focusing on same-sex attracted men and transgender PLHIV in Thailand. The article also fills a gap in the literature on nationalism in Southeast Asia by contributing to an understanding of nationalist discourses through the lens of HIV.

Below we examine the research methods adopted for the study. The article then moves on to present participants’ stories and analyse stigma reduction in relation to sex-, gender- and HIV.

Methods

The research adopted aspects of Grounded Theory Method (GTM) within a qualitative research paradigm of fieldwork and analysis. Grounded theory method is a sociological research method designed to discover new social theory ‘grounded’ in the stories that people tell (Glaser and Strauss 1967). This research study used in-depth, one-to-one interviews to collect stories and experiences and categorise emerging and dominant themes from these interviews. The research also used written texts from newspapers, magazine articles, research and academic articles to inform the dominant thematic categories emerging from interviews (Urgurart 2007). Ethics approval for the study of human subjects was received from the University of New England and approved again by the Queensland University of Technology.

Two cycles of in-depth interviews were conducted between 2012 and 2015. The study interviewed 22 participants in total. 12 participants identified as same-sex attracted men living with HIV while 10 participants identified as transgender people living with HIV. The participants viewed MSM and male-to-female transgender people with HIV as one group living with HIV. When asked for guidance on whether the researchers should treat them separately, as different identify groups, they requested that we consider them together. This is why this article puts MSM and transgender people with HIV together.

Nine participants were in their 30 s and ten participants were in their 40 s. The youngest participant was 24 and two participants were aged 50 and 51 years old. 14 participants were interviewed twice (i.e. in both cycles) while 8 participants were interviewed once only. When a participant was interviewed only once it was because (a) the participant was lost to follow-up in their group and didn’t respond to calls or emails from the researcher and (b) the person was new a new member of the self-help group and had no long-term experience with the group to share for the project, beyond their personal motivation for participating.

The organisations approached identified themselves as self-help or peer-based groups of Thai same-sex attracted men and transgender PLHIV who were offering peer support, guidance and referral information to other Thai same-sex attracted men and transgender PLHIV in their city. Some of these groups were registered as organisations with the Thai government (formal) and some were unregistered HIV groups (informal). A criterion for approaching a group was that the organization had to be led by same-sex attracted men and/or transgender PLHIV and be serving same-sex attracted men and/or transgender PLHIV. Being a paid or unpaid leader of a group, network or organization serving same-sex attracted men and/or transgender PLHIV was a criterion for interviewing individuals in each group. The researcher travelled to the participants in order to interview them. Interviews were held at the group’s offices where they existed or in a private hotel room where they did not. Three participants were interviewed in Bangkok. Six participants were interviewed in Chiang Mai and three in Chiang Rai (both in Northern Thailand). Three participants were interviewed in Khon Kaen (North-eastern Thailand) and seven participants were interviewed in Pattaya (Central Thailand).

Groups and organisations were approached in Southern Thailand but they all declined to participate—this may be due to religious and cultural issues that make Southern Thailand more problematic for same-sex attracted men and transgender PLHIV. Note that the names and general locations of organizations are withheld or ambiguously presented in this article and in the broader study. This is because there are so few of them—and they are easily identified. Related to this, is that some of the topics and themes arising from the study were highly political and contentious. It was important to protect the privacy of both the individuals and the organisations or groups participating in order to avoid potential negative repercussions from participation in this study.

What is revealed from the above description is that purposive and theoretical sampling were the major methods used to recruit participants. This involved first targeting leaders of specific organisations and groups already known to the researcher. Early participants in cycle one interviews were invited to recommend suitable new participants and organisations to add to cycle two—based on the study criteria. This participatory approach was deemed effective because it gave the power of selection to participants themselves—a potentially important strategy when investigating networks where people feel highly stigmatised by the social system (Liamputtong 2007). Theoretical sampling was used to determine whether to hold a second interview with a participant. Where they were simply saturating categories that already existed in their first interview they were not interviewed again—this applied to just four of the participants.

Microsoft Word was used to store and analyse interview data. Word search was used to identify common words and themes. Coding is an inductive process of transcribing categorising and interrogating data (Charmaz 2006) by developing thematic categories and properties from data (Corbin and Strauss 2008). Coding for this study involved transcribing and translating interviews, then categorizing the data and writing memoranda (2008). Coding supported the continuous comparative analysis process of themes and stories. One fact or viewpoint presented by one participant or group became the object for comparison with other participants or groups, which, then, validated or negated its accuracy (Glaser and Strauss 1967).

Coding, memo writing and analysis was based on simultaneous coding, which allows for categorizing interview segments across multiple themes (Saldana 2010). This was important because participants were telling complex stories that involved their own personal narratives as well as their motivation for taking collective action through their groups, networks and organizations. Glesne (2006) argues that simultaneous coding can be justified because “social interaction does not occur in neat, isolated units” and so meanings and experiences will be cross-cutting and need to be considered across multiple themes to make sense of them.

In the next section, we present the words of the participants themselves and analyse the meanings of participant stories as they relate to mechanisms of deviance disavowal for sex-, gender- and living with HIV.

Using Thai nationalist symbols for deviance disavowal

The goal of deviance disavowal is to appear ‘normal’, to be perceived as like other people and not different in ways that would lead to marginalisation or rejection from others. It also may allow individuals to feel themselves worthy of the health rights available to Thai citizens and to being able to live a meaningful life, according to Thai norms and expectations described in the literature above. By deploying Thai nationalist discourse for deviance disavowal individuals are able to feel closer to other Thais and a part of the ‘good’ social fabric of Thai society.

The first deviance disavowal mechanism deployed by groups in this study was the symbol of blood in Thai nationalism and its adoption by same-sex-attracted men and transgender PLHIV to reduce and minimise difference and strangeness. The second mechanism for deviance disavowal was related to the symbol of family in Thai nationalism and its use as a mechanism to build personal agency within self-help groups. The third mechanism for deviance disavowal was the concept of heart in Thai nationalism and it’s adoption by groups of same-sex-attracted men and transgender PLHIV to perform their own self-sacrifice for other Thais living with HIV and their families.

Blood, Thai-ness and HIV

We refer to blood first because it is the foundational metaphor in Thai nationalism. Blood is the dominant discursive symbol for collectiveness, for same-ness in Thai culture and nationhood, deployed in the Thai nationalist project (Mulders 1997). For example, the Thai national anthem represents “the flesh and blood that Thai people share”, and the colour red in the Thai flag represents the blood and body of Thai people. The concept of having the same blood—sharing a unity with others through blood—represents a well understood system of unity through race among Thai people. Blood is therefore a well-trodden discursive pathway for unity and for imagining a shared connection with others who identify themselves as Thai.

Adopting the metaphor of blood allowed same-sex-attracted men and transgender PLHIV to develop ‘a different system of morality’ that they could apply to their Thai sociocultural world (Maffesoli 1996). This is because the testing of one’s blood for HIV antibodies is the process that confirms one is living with HIV. The result of an HIV-antibody blood test precipitates the moment of crisis and life change that is a defining moment in the lives of participants in the study.

Len is a leader of a same-sex-attracted men and transgender PLHIV self-help group. He described how sharing a “common blood colour” was an important unifying symbol in his self-help group. He said it implied sensitivity to one another and taking care of each other, and he underscored how this was different to relations to those outside the group.

We belong to the common blood colour. This is a very important point of connection... The meaning of common blood colour is that we are all living with HIV. It implies sensitivity too, you know? We care for, feel concern, and worry about each other. We exchange our personal way of life. You can only talk about it here ... cannot talk about it outside. It is our secret. The way of life, about anti-virus drugs, sex, and all the dirty stuff [he uses the slang terms He Hag Tad Raberd], we talk about everything that we can’t do it outside. (Len, same-sex-attracted man)

As participants joined groups of same-sex-attracted men and transgender people living with HIV, they were taught that blood was the unifying symbol among them. They were taught that “we are the same bloodline: the HIV bloodline. We have that in common and can share experiences” (Fai). They were told, “You can only talk about that [means: HIV] here in the group” (Len). They inculcated in new group members the idea that having HIV in the blood made them the same as each other. Having the same blood colour meant that group members were blood siblings with HIV (Jay).

The Thai nationalist depiction of blood also involves the idea of “blood spilled”, and of the pain that Thai characters in the past endured as a sacrifice for Thais in the present moment (Mulders 1997). Study participants also used this concept of pain and sacrifice from the past to connote not only self-sacrifice but also the fidelity that group members now owed each other. Vee, a transgender participant, explained her role as a senior member in her group. She described how the process of role modelling was passed to new members in her group.

We can be models for new ones [members newly diagnosed with HIV] that come to get medicine ... like I’m living with HIV and I’m not dead, survive 8- 9 years now. So don’t think that once you’re infected you’ll die... You too can be role models for those infected and positive. Why aren’t we dead? Why are we strong? Still beautiful? It’s because we take the ARV medicine. It’s very helpful. I like this part [being a role model for others]. (Vee, transgender person)

Therefore, the concept of blood and a shared sense of pain from the blood test result created an intimate connection among group members. Thai nationalism, with its adoption of blood as a metaphor, appears to have assisted the building of this shared connection among group members. Helping others and sharing one’s own story transformed difficult experiences into something meaningful and useful to others. Thai nationalism and it’s use of the symbol of blood constellated a system of shared responsibility and fidelity that group members felt toward one another. It turned tragic events in to something meaningful and shared.

Family, Thai-ness and HIV

Family is a foundational metaphor in both Thai culture and nationhood in the Thai nationalist project (Mulders 1997). Thais are represented as a family of people, and it is within one’s family that one finds safety and protection from outside enemies and difficulties.

Family was one of the most common metaphors participants adopted in their community and within the self-help groups of same-sex-attracted men and transgender PLHIV. Family referents are common throughout Thai daily life. What is salient about the reproduction of Thai family systems and relationships in self-help groups is that the use of family metaphors mirrors this Thai sociocultural system and uses it to facilitate HIV health agency among group members living with HIV. The reports of study participants also confirm Shigeharu Tanabe’s conclusion that self-help groups for Thai people with HIV may function as communities of practice; i.e., as a site of “learning … a space for acquiring and preserving knowledge” (Tanabe 2008).

The current study suggests that this exchange of experience and knowledge, of assisting and teaching members how to access health service and treatment, is mediated through the concept of family and, through it, Thai family relationships are reproduced within the self-help group. Among its manifestations were references to each other in the family roles of parent, child, and older and younger sibling. For example, when someone was considered the leader or elder of the group, they were referred to as ‘father’ or ‘mother’. What is most striking about the participants’ evocation of family terms is their deliberate avoidance of terms such as ‘patient’ and ‘client’ to refer to each other. This was an important point of departure from the clinical and other government service systems around them.

Ang is a transgender participant who was 42 years old when interviewed. Ang described the group in the following way:

We live like a family. We give each other a chance to be strong and healthy enough to get back to the outside world again. We love and care each other just like at a hospital, to help caring for the patient who has no other place to go. We are a family that take care each other. I care for you; you care for me. When you are strong enough you have to leave and help yourself outside. (Ang, transgender person)

Ang recovered from her illness and accepted a place as a leader and supporter of newcomers in the group. She described her role as like that of a mother.

In the TG group I am a leader, like a mother. I am a mother who looks after them [other people in the group]. A new comer always asks me, ‘Mommy, what shall I do?’ It is like we are living in a family, there must be rule and regulation here for everyone to follow. (Ang, transgender person)

Family referents were used to emphasize the group’s difference to the formality of the clinical and government service system as well as to distinguish between the community group and the cultures of corporations. It was meant to underline the warmth and intimacy that characterized relationships and interactions among members of the self-help group.

There’s a foundation of being Thai but at the same time the work we do involves helping others therefore it is different from a corporation. If it were a company then there’s a boss and subordinates where they will exercise their power according to their duty, which is different from working as a group like ours. We are all siblings because we have no differences. If we work like siblings, when you do something wrong, I’ll teach you and give you advice and maybe reprimand you a little and teach you not to make the same mistake again. (Gai, same-sex attracted man)

Participants spoke of their groups and their meeting places as a home, of the leaders as parents and of themselves as children who needed to be guided and taught; and, as older siblings, they guided and taught the newer members. Noo said,

This group is like another home, a place to relax and make me happy. It’s like another home, the leaders are my parents, that allows me to grow and I can depend on them. If it were my parents, they can take care of me. (Noo, transgender person)

Lack of knowledge about how to access public health services was common at the time of diagnosis with HIV. The process of learning about HIV and the use of health services was sometimes compared to growing up as children in the family home, and the teaching of good virtues and morality to young children.

To say that when we were children we have parents to look after us, what they taught, what hopes do we have for the future and did we fulfil those dreams, why because we got HIV first [means: we have been living with the knowledge of having HIV longer than the newer member]... when we take the younger ones, we talk about heaven and hell, good and bad, why we exist and have to live this life path, talk about antiretroviral drugs about HIV, the reasons one, two, three, four including activities that build on the worthiness of oneself to Thai society, that is important. (Len, same-sex attracted man)

For Yai, it was normal to refer to new and older members of his group, or those just seeking assistance and advice at HIV diagnosis, as younger or older brothers.

This is what we mean to extend helping hands for friends. We want to help brothers who have health problems and nowhere to go to come here. There was a case of a brother last week whose blood test was found to be HIV positive in Bangkok. He was distressed ... he talked with me last Wednesday. (Yai, same-sex attracted man)

The idea of the group as a family was reinforced by the belief that the experiences and difficulties of living with HIV were not easily understood or accepted by others not living with HIV. The rejection, hostility and fear of the people outside the group were contrasted with the warmth and care of people inside the group. Lyn explained,

My friends from the old days ... saw me, but did not say hello. They did not want to talk fine. I would not talk to them either. No problem for me to be alone. (Lyn, transgender person)

Such rejection and hostility was compared with the warmth of the community or self-help group of same-sex-attracted men and transgender PLHIV.

The infected group at the hospital would say I’m worried about you. But sometimes doctors won’t go this far, but we’re all friends, we’re blood siblings with HIV, we have to take care of each other. (Lyn, transgender person)

Noo believed that self-help groups of PLHIV were special in ways that only people with HIV could comprehend. She believed a divide existed between those with HIV and those without. She said,

If I go with others who are not living with HIV it’s like I’m some creature, I won’t be happy. I can go but I won’t be happy. It’s not like our own group. There’s this understanding, loving relationship, like we’re siblings. (Noo, transgender person)

Noo also believed that HIV-negative people would always “feel a bit uneasy” about taking care of someone with HIV. There was a belief that those living with HIV would not have these negative reactions “in their hearts” (Noo). Instead, they would be fully prepared to embrace another person with HIV and take care of that person without reservations.

You might have learned from a handbook and all, but you are still scared a little anyhow. No matter what training you’ve passed if you are negative you’ll feel a bit objectionable toward a positive person whose body is full of lumps, and sores and rashes. (Noo, transgender person)

Family referents were important because, when outsiders looked inside the group, they saw familiar social relationships and structures that reflected broader Thai values of sacrifice and selfless care of others. Gai explained,

The people here in the local neighbourhood began to notice that a lot of people came in and went out to see us all the time, some were healthy and some were in poor condition. Some of our neighbours came to see me and asked what type of business we were doing. They saw some people who came to us were in terrible condition, some could not walk, some had to wear mask, and so forth. I told them these were the people who were at risk to the HIV infection and that it did mean they were already infected by it. My work was about public health, so it was not unusual that people came to see me for help. So, people were quite suspicious in the community. People came wearing masks and so neighbours asked what was going on. I described to the people of the community about what we had been doing. It would help the people in this community and nearby area to come here. The community understood us better. Besides, they all saw me working and I was never got sick [means wasn’t infected by others]. We were accepted by the community at last. (Gai, same-sex attracted man)

Gai described how his group adopted “family day”, a concept borrowed from rural Thai Buddhism, in which local temples would hold family days on special Buddhist holidays.

We have an activity called family day. The family day activity, everyone comes here as a family ... to sit and have meals together. Some friends influence each other to look after their health. They meet in a big group of friends like this each month. When they meet, everybody is laughing and full of smiles, no crying or resentment or despondency. Everybody is a counsellor. And this is the advantage of the family day. (Gai, same-sex attracted man)

Therefore, forming groups of mainstream people with HIV, or same-sex-attracted men and transgender PLHIV, became a strategy for solving the HIV-knowledge gap. Through self-help groups, participants heard the experiences of others about access to the health system, blood testing and treatment. Groups also helped participants see that they could be “happy and joyful” again after diagnosis with HIV.

An individuals’ need for the group, the exchange of experiences and information, relationships among members and the identity of the collective itself were presented as a re-creation of the caring and nurturing relationships within the traditional Thai family. This concept of family entailed the idea of care for others in the group and sacrifice through the system of older and younger siblings. Importantly, when outsiders looked inside the group, they saw traditional Thai values and relationships, which were recognizable as normal and valuable Thai social systems and values.

Heart, Thai-ness and HIV

Same-sex-attracted men and transgender people living with HIV demonstrated their goodness, their worthiness and capacity for self-sacrifice, through collective activities for other Thais living with HIV. Participants referred to their collective activities as demonstrating Thai ‘heart’ and ‘spirit’; they further linked their activities to the Thai concept of krèng jai. Krèng jai is literally translated as “[being] in awe of the heart” or “fear of heart”, but a practical translation yields meanings more like “consideration” or “being considerate of others”.

Krèng jai also encompasses respect and supplication to parents, elders and Thai authorities. It also reflects a commitment to the care of and compassion for others, as articulated in Thai Buddhism (in Thai: เมธากรุณา). Gai explained krèng jai as an important characteristic of Thai people.

It’s about the culture and traditions of Thai people which mainly entail respect for others, for older people and being respectful, kreng jai and includes being generous towards others as well. (Gai, same-sex attracted man)

Heart and spirit in the community or self-help group became discursive devices to express a “voluntary spirit for public service” (Jay, transgender person), a “true voluntary spirit” (Fai, transgender person) after HIV diagnosis. By taking care of others, participants also accrued good karma and merit [in Thai: ทําบุณ or tham boon] within the Thai Buddhist conception of accumulating virtue for present and future lives. Increased heart and krèng jai after diagnosis was often articulated through ‘before and after’ stories. Before-and-after narratives were about the personal transformation from being ordinary and generally selfish individuals to becoming traumatized and ostracized by HIV diagnosis—and then becoming ‘extraordinary’ persons through participation in the self-help group.

Yai talked about his work in the local hospital HIV ward and outpatient clinic on behalf of his group. He described the importance of his role was the way it complemented the work of the clinical staff, filling a gap in clinical-service delivery,

We receive nothing from [hospital name] but we work there with our heart. We help them a lot, from reading patient histories, pushing [relocating] patient beds, putting the patients to bed, and helping make the hospital services more efficient. We help coordinate the work. Most patients are not familiar with the hospital staff but with us only. Any day I am absent from the work, they would keep asking where I am. If they have anything in mind like concerns or problems in their minds, they would want to talk with me directly. I think this is one of disadvantages that the patients are not willing to talk to hospital staff but more willing to talk openly with us who are also HIV positive like them. (Yai, same-sex attracted man)

Oowan is a 36-year-old same-sex-attracted man who has been living with HIV for 10 years. For Oowan, the work of his self-help group conformed to his understanding of ‘good Thai-ness’ as he was taught in childhood. The work of the group actualized the virtuous religious precepts of Thai Buddhism.

Our group knows that this is very important. To reflect that we are Thai and so we’d like to help relieve the burden of our fellow Thais. Thais must be grateful. Suppose we could help relief his [means: a group member’s] family burden, provide advice and correct information; he may get better, feel relieved and less stressed. He may get back to work, to live normally at home. This is something that conforms to our religion. It is about gratefulness. We were taught about this as children and to help other people who are weaker and are having problem. (Oowan, same-sex attracted man)

One self-help group of same-sex-attracted men and transgender PLHIV incorporated the metaphor of heart into its description of service delivery and the linking capital it sought through partnerships with other service systems. They called this way of working the “three hearts” system (in Thai สามหัวใจ or saam hua jai). This triple-heart metaphor is reminiscent of the Buddhist concept of “the three gems” and also of the more nationalist Thai concept of “the three pillars”.

The group identified the first heart in their service system as the same-sex-attracted man or transgender person living with HIV. The second heart was the staff and volunteers of the group, while the third heart was the group of clinical-service providers in hospitals and clinics. Each heart brings the resources and spirit needed to be of benefit to others, and the goal of the group is to facilitate the deployment of the three hearts in service to same-sex-attracted men and transgender people with HIV. Gai gave a practical example of how the concept of three hearts works.

Say you are working in the hospital. I’m close to you and we are friends. Err personal. Then, someone else come to me and wants to have a HIV test. So, I take them to see you. But I have to build friendship with that person first, until we feel familiar to and trust in each other. First, we must trust in each other, and then I can take them to see you at the hospital. “Hey, this is my friend. He’s in here [means: works at the hospital]. You, err, he is very nice, he will be able to look after, take care of you. If you have any problems, he could give you good suggestions, not less than mine” something like this. And then, three of us become friends. Hmm yes, and so this is the model of the “three heart”. (Gai, same-sex attracted man)

Yai described the value of being seen by the community for people living with HIV in his group.

They [means: people in the local community] can see our value and the result of work we do with the community to disseminate information through the media for the benefit of the next generation of young people. (Yai, same-sex attracted man)

Yai also described how one of the transgender PLHIV in his self-help group was able to change the negative attitudes of one of the local village leaders in the community.

The head of the local government office did not know us before and even expressed aversion against MSM or TG who had long hair. But our role and ability for hard working for the community has produced good, tangible results. Later, the head of the government office gave us an opportunity by allocating part of the annual budget to continue our work. He can see what we accomplish through both prevention and care work in the area. He can see that we work really hard. But someone had to prove it by doing the work to get his attention. If he didn’t see it first, he wouldn’t give anything. After a number of years of working hard, they see our accomplishment, and then give us support. (Yai, same-sex attracted man)

Jack was first motivated to participate in mainstream networks and groups of people living with HIV in order to be of service to others. He highlighted the ways that giving to others accumulated merit in the Thai Buddhist understanding of that term, and this merit helped him to get well and stay well.

I can visit patients. Some of their relatives discriminated against them, won’t accept them. So I talked to the relatives to build an understanding that AIDS is not such a serious disease, it’s not easily contagious... I take care of them, touch them, hold their hands. The fact that I recovered from HIV-related complications is probably a part of my merit. I’m Buddhist so I believe that the merit in the good I do, helping others, will also make my life better. (Jack, same-sex attracted man)

Therefore, the participants used the metaphor of heart to describe the motivations behind their collective action in community and self-help groups. Doing so helped them shift the negative public discourse in Thailand about same-sex-attracted men, transgender people and people living with HIV. Heart and spirit signaled the group’s respect for Thai social, cultural and religious values. An important factor was that this compassion and demonstration of care for others could be seen by others in the community and, therefore, facilitated the change in public attitudes that same-sex- attracted men and transgender PLHIV hoped to catalyze and then sustain in Thai society.

Concluding discussion

The first key lesson from this study is that HIV diagnosis disrupted, not only same-sex or transgender lives, but national identities previously accepted and adopted by the Thai study participants. All study participants accepted the normative notions of Thai identity before their diagnosis and felt very little challenge to those national identities before HIV diagnosis. But the moment of HIV diagnosis appears to have disrupted the notion that participants were ‘good’ Thai citizen/subjects worthy of the rights of Thai citizens. They feared judgement from others and exclusion and in some cases experienced same. Previously manageable sex- and gender-related stigma and discrimination became unmanageable once HIV was added to the mix. There is a clear reason for this. In Thai people’s perception, sexuality is something to be kept a secret, not to be revealed, not to be discussed. Therefore, a disease that is acquired because of a sexual act is a serious matter, a bad thing. This is what makes HIV so profoundly disruptive. In the disclosure of HIV is also the disclosure of sex and associated differences in sex and gender norms and associations with sex work and drug-use. As McKinnon says, one can’t be associated with these themes and also be a good Thai citizen/subject.

The second key lesson is that local collectives can be deployed to challenge stigma experienced at local level and this may be required to foster fundamental change. Erving Goffman originally observed that stigmatizing attributes are in part symbolic and often endogenous because they rely on social or collective processes to sustain and replicate the belief systems associated with them (Goffman 1963). What that means is that stigmatising dynamics can be difficult to shift alone, i.e. as a lone individual. Collective action becomes necessary to challenge collectively generated processes of stigma and discrimination. The idea of the collective helped participants in this study to learn together, re-imagine together and to challenge social norms.

The third key lesson is that nationalism and its symbols can be deployed as a ‘deviance disavowal’ strategy. Nationalism can be used to both generate stigma toward different Thai citizens but, what is significant from this research, is that it can be used to challenge that stigma. Participants in this study used their local collectives to perform ‘good Thai-ness’ while living with HIV. They co-opted the words, symbols and metaphors of nationalism (symbols like blood, family and heart) and adopted them as technologies to change social norms.

This unique kind of deviance disavowal allowed participants to feel that their lives remain meaningful and respectable, even after diagnosis with HIV. It allowed them to feel they were valuable and honourable in terms that have been defined by Thai social norms and expectations and described in the literature above). Disavowing deviance in this way encouraged same-sex attracted men and transgender PLHIV to see themselves as worthy of participating in Thai society, as contributing and sacrificing after HIV diagnosis and therefore as worthy of access to the health rights provided to all Thai citizens.

The goal of this deviance disavowal was therefore to minimise the perceived differences to other Thais largely by demonstrating how their lives and their local groups embodied ‘good Thai-ness.’ By doing so, they were able to build a discursive bridge back to Thai society and to the health care services they needed to stay healthy and alive. By deploying Thai nationalism, same-sex attracted men and transgender PLHIV reposition ‘spoiled identities’ and break through the stigma they report after HIV diagnosis. Understanding the mechanisms of ‘deviance disavowal’ used in Thailand may provide an opportunity to deploy effective strategies to manage stigma that interferes with health care in Thailand, but also in other nation states, and may be applicable to other stigmatised groups and illnesses.