Moral injury and the struggle for recognition of women living with HIV/AIDS in Indonesia

Abstract

Spanish

French

HIV/AIDS is often considered a moral issue. Consequently, it causes a moral injury for people, including women, who live with HIV/AIDS. The feminization of HIV/AIDS over the last few decades has placed women in a group highly vulnerable to the experience of moral injury. Using Axel Honneth’s theory of moral injury and data collected from 33 women living with HIV/AIDS (WLWHA) in three cities in Indonesia, this article aims to analyze how these women deal with and survive moral injury due to their HIV/AIDS status. The study found that for many WLWHA, the experience of moral injury has destroyed self-confidence but at the same time also provided an impetus for struggle and collective action. These women were more likely to survive the negative impacts of moral injury when they received adequate support from three levels of interaction: interpersonal, the state, and society in general. Additionally, the level of participation in HIV/AIDS-related organizations contributed to different forms of recognition.

Keywords

HIV/AIDS Axel Honneth Indonesia moral injury recognition women

Introduction

The significant global increase of HIV/AIDS cases among women, especially those who are from non-key affected populations, over the last several years indicates a couple of issues, at least. First, the feminization of HIV/AIDS has been on the rise across the globe. A report by UNAIDS found that in 2015, 51% of the 36.7 million people living with HIV/AIDS were women (UNAIDS, 2017). In 2016, there were around 1.8 million women living with HIV/AIDS (WLWHA) in the Asia Pacific region (UNAIDS, 2016a). Second, HIV/AIDS transmission has been more complex than many people thought. The evidence shows that women are mainly infected with HIV/AIDS through heterosexual transmission rather than by any other means of transmission such as drug injection (Higgins et al., 2010), and they are primarily infected by their husbands or partners. According to the United Nations Population Fund (UNFPA, 2005), more than four-fifths of new cases of HIV/AIDS among women occurred in marriages or long-term relationships with a single sexual partner. In Africa, for instance, 60–80% of WLWHA were infected by their husbands, who were their only sexual partner. Similar trends can also be seen in contexts as diverse as India (90%), Mexico (30%), Thailand (75%), and Cambodia (42%).

While many have written about WLWHA, at least a couple of problems can be identified. First, most works on WLWHA were carried out in rich, industrial countries (Watkins-Hayes et al., 2012). Among developing countries research has been concentrated on the proliferation of HIV/AIDS in high-prevalence countries in Sub-Saharan Africa (Béné and Merten, 2008). There is a gap in current research on WLWHA in low-prevalence countries like Indonesia.

Second, the domination of moral perspectives in understanding HIV/AIDS has made it difficult to understand the specific problems faced by women in dealing with HIV/AIDS in developing countries. In Indonesia, for instance, HIV/AIDS has been conceptualized not only as a disease but also as a moral issue since its first discovery in 1981 (Liamputtong, 2013). It is considered a moral issue as HIV/AIDS is often associated with acts that violate social norms, moral standards or religion. The religious standard of morality strictly prohibits drugs, prostitution, and adultery. Consequently, the association of HIV/AIDS to these activities has led many people to assume that HIV/AIDS is ‘God’s Punishment for sexual sin’ (Crisovan, 2006: 22). Despite changes in the proliferation of HIV/AIDS, the stigmatization of people living with HIV/AIDS remains pervasive (Scambler, 2003). This stigmatization has created a notion that HIV/AIDS is a disease of the ‘other’ (Altman, 2001), or those that are vulnerable to ‘high-risk’ behaviors (Crisovan, 2006), such as homosexual men, sex workers, drug users, foreigners, and other high-risk groups. As a result, as scholarly and policy attention has been concentrated on high-risk groups, we lack sufficient knowledge about the proliferation of HIV/AIDS among non-key affected groups, such as married women.

This study aims to contribute to the discussion of the feminization of HIV/AIDS by exploring the struggle of WLWHA in dealing with the moralization of HIV/AIDS in Indonesia. In many important ways, the country provides an excellent case to study the struggle of WLWHA to deal with the negative impacts of the moralization of HIV/AIDS. First, although Indonesia can be considered a low-prevalence country, with an HIV/AIDS prevalence of around 0.2% (UNICEF, 2015), the incidence of HIV/AIDS cases has been on the rise, increasing from 859 total new cases in the period 1987–2005 to over 41,250 new cases in 2016 alone. This significant increase of new cases was partly due to the greater availability of HIV/AIDS prevention and treatment facilities, which enabled Indonesians to check their HIV status and health officials to report the new cases. Nevertheless, the surge was particularly alarming. In fact, Indonesia is one of four countries in Asia (Bangladesh, Sri Lanka, and the Philippines) that have all shown a 68% increase in the number of new HIV infections since 2010 (UNAIDS, 2016b).

Second, there has been a feminization of HIV/AIDS in Indonesia. Although initial cases of HIV/AIDS were mostly identified among homosexual men and sex workers, new cases are increasingly found among heterosexual men and women. Data from the Indonesian Ministry of Health (2017) showed that 67.8% of reported cases were identified among heterosexual men and women (see Figure 1), with most cases (12,302 cases out of 87,453 total cases) found among married women who were infected by their husbands or partners.

Figure 1.

Percentage of reported cases by risk factors.

Third, although there have been several studies on HIV/AIDS in Indonesia, little is known about how WLWHA deal with and survive the moralization and stigmatization of HIV/AIDS. The existing works on HIV/AIDS in Indonesia include the impact of mobility on seropositive women in Papua (Butt, 2015), the dynamics of spousal relationship among discordant and concordant HIV couples in relation to privacy and PMTCT (Prevention Mother-to-Child Transmission) in Karawang, West Java (Hidayana and Tenni, 2015), and the role of two motherhood organizations in socializing the PMTCT program in Jakarta (Imelda, 2011). While some of these studies explore the experience of stigma as well as the image of HIV/AIDS as a moral disease, they do not specifically examine how WLWHA deal with the moralization of HIV/AIDS. More importantly, most of these studies focus on a specific region in Indonesia.

By assessing the experience of WLWHA and their participation in HIV/AIDS-related organizations in several regions in Indonesia this study has two goals. First, the study aims to examine how WLWHA deal with the HIV/AIDS status. Second, the study also strives to assess the extent to which participation in HIV/AIDS-related organizations helps these women to regain self-confidence, self-respect, and self-esteem. My findings suggest that recognition in three spheres of interaction (interpersonal, state, and society) has helped WLWHA to recover from the experience of moral injury. Other than family support, the role of organizations, particularly peer support groups, is critical to empowering WLWHA. The level of participation of HIV-positive women in these organizations also influences the forms of recognition (love, right, and solidarity) that they use to manage the moral injury they experience as WLWHA.

Women living with HIV/AIDS: Contributing factors, well-being, and alleviation approaches

Despite the increasing scholarly interest in the study of women and HIV/AIDS, little attention has been paid to the WLWHA’s experiences of moral injury and their struggle to achieve recognition. Many studies on this subject often focused on contributing factors to women’s vulnerability to HIV/AIDS.

Emphasizing structural and socioeconomic factors, most of the existing works on women and HIV/AIDS have suggested that economic insecurity through unemployment plays an important role in women’s vulnerability to engage in transactional sex which increases their susceptibility to HIV/AIDS (Austin et al., 2017; Béné and Merten, 2008; Dunkle et al., 2004; Mojola, 2011, 2014). These studies have also showed that the increase of HIV prevalence among young women is more likely driven by transactional sex as a means to gain economic security and to fulfill their consumption and modern lifestyles (Austin et al., 2017; Mojola, 2014).

By emphasizing gender inequality in HIV prevalence, other works show that in addition to economic development, women’s empowerment and access to property, bank loans, health resources, as well as women’ secondary school enrollment, have contributed to preventing women’s vulnerability to HIV/AIDS (Austin and Noble, 2014; Burroway, 2010, 2012). While these studies have helped to understand general patterns of women’s vulnerability to HIV/AIDS on a global and cross-national scale, the use of the quantitative method has prevented these studies from providing a deeper understanding of WLWHA’s complex experiences.

Drawing from qualitative analysis, another line of research focused on the socioeconomic positions of WLWHA and their well-being as well as gender-sensitive spaces for HIV/AIDS alleviation approaches (Arrivillaga et al., 2012; DeMotts, 2008). However, despite the significant contribution of these works to the study of WLWHA, they say little about how WLWHA struggle with the moral injury of HIV/AIDS. In fact, research on this specific issue is important to understand how WLWHA struggle with and survive moral injury and how society and state could contribute to minimizing the difficulties faced by these women in dealing with HIV/AIDS. Therefore, by focusing on the experience of moral injury among WLWHA, this study will be a beneficial addition to the existing study on women and HIV/AIDS.

Moral injury and the struggle for recognition: A theoretical framework

This study uses the theory of moral injury and the struggle for recognition developed by Axel Honneth (1995). In many respects, Honneth’s theory of moral injury offers a new perspective in understanding the struggle of WLWHA in dealing with their health condition. The theory differs significantly from the dominant theoretical perspective in the study of HIV/AIDS, which often uses Goffman’s theory of stigma to frame the analysis. According to Goffman, stigma can be defined as ‘an attribute that is deeply discrediting’ (1963: 12), which implies two different categories depending on the level of concealability of the stigmatized attribute, whether it is visible or concealable: namely the discredited and discreditable, respectively. He emphasized the role of undesirable characteristics in shaping individuals’ spoiled identity (1963). Stigma, therefore, is seen as a negative marker attributed to individuals’ differences that are negatively valued in society. The concept of stigma, however, is often considered as implying static characteristics. It misses social and political questions about how it is possible to overcome inequality and injustice in society (Tyler and Slater, 2018).

Different from Goffman’s theory of stigma, Honneth’s concept of moral injury is more dynamic. Defined as the experience of disrespect (Miβachtung), denial of recognition, and the feeling of being unjustly treated, the idea of moral injury provides a basis for social critique. Moral injury may serve as a source of motivation for social confrontation and encourages people to engage in a struggle for recognition and collective action. Other than providing the motivation for social struggle, moral injury also contributes to the examination of the moral role that must be attributed to the development of relations of recognition (Honneth, 1995).

As further argued by Honneth, the development of mutual recognition – ‘self which is able to maintain itself in the community, that is recognized in the community in so far as it recognizes the others’ (1995: 78) – can be established in three interconnected spheres of interactions: interpersonal, state, and society. These three domains contribute to the development of self-confidence, self-respect, and self-esteem, respectively. While self-confidence is inherent to the experience of love, self-respect and self-esteem can be developed from the experiences of legal recognition (rights) and solidarity, respectively (Honneth, 1995).

First, love relationships are primary relationships established from strong emotional attachments among a small number of people, such as friendships, parent–child relationships within the family, as well as the erotic relationship between lovers (Honneth, 1995). According to Honneth, love relationships are the first step of reciprocal recognition, because they enable the development and maintenance of individuals’ physical integrity and basic relations to the self or basic trust, which he defined as self-confidence. The interpersonal experience of love is very important for relations of recognition as it provides ‘the psychological precondition for the development of all further attitudes of self-respect and self-esteem’ (1995: 107).

Second, legal relationships allow individuals both to feel recognized without consideration of any personal characteristics, and to share the same mutual responsibility as other members of society (Honneth, 1995). Legal recognition is necessary to prevent individuals being structurally excluded from certain rights within a society. Therefore, legal recognition is seen as society’s protection of the individual’s dignity from the experience of moral injury, as well as protection of individuals’ public participation in society as morally responsible persons (Honneth, 1995). Honneth believed that granting an individual equal rights as a member of the community is necessary to establish self-respect.

Third, solidarity relationships refer to an interactive relationship of mutual sympathy among various members of a social group (Honneth, 1995). Honneth further argued that the concept of solidarity not only refers to group relationships that emerge from the experience of collective resistance to political oppression, but also to mutual recognition between members of a social group regarding every individual’s traits and abilities. Solidarity relationships are important to the development of self-esteem – individuals’ sense that they are special and unique as they have traits and abilities valued highly by society. The sense that individuals have nothing of value to offer can influence the development of their identity, as individuality and self-esteem are closely related.

While the experience of social disrespect can give rise to the loss of personal self-esteem, as well as the loss of opportunity for their traits and abilities to be esteemed by others, the experience of social esteem and recognition enables individuals to achieve a feeling of group-pride or collective honor. In this context, individuals recognize that as a part of a social group, they can collectively make improvements for society, recognized by all of its members (Honneth, 1995).

Honneth’s theory has received wide scholarly attention. Nevertheless, many studies using his theory mostly focus on democracy, work, global politics, social justice, poverty, poor women and union membership, and motherhood issues (Hill, 2010; Schweiger, 2013; Smyth, 2012). To the best of my knowledge, there is no study that applies Honneth’s theory of moral injury to the study of HIV/AIDS. In fact, Honneth’s theory is relevant to such a study. Honneth’s argument about the interconnection between self, state, and society is very helpful to better understand the relationship between the experience of moral injury from being WLWHA and the positive change in their life. Applying Honneth’s concept, I argue that the forms of recognition associated with love, rights, and solidarity function as protection for WLWHA from the experience of moral injury. Table 1 shows the application of Honneth’s theory in the context of the experience of WLWHA in Indonesia.

Table 1.

The structure of relations of recognition.

	Forms of non-recognition/disrespect	Threatened component of personality	Organizational relations of recognition and respect	Dimension of personality	Mode of recognition	Forms of recognition	Practical relation to self
Interpersonal	HIV-positive status, low status in family and community	Physical integrity	Participation in organizations Training and education	Needs and emotions	Emotional support	Primary relationship (love, friendship)	Self-confidence
State	Denial of rights and exclusion from public policy	Social integrity	Advocate for government recognition and inclusion in public policy	Moral responsibility	Cognitive respect	Legal relations (rights)	Self-respect
Society	Stigmatized, insult, condemnation, exclusion	‘Honor’ dignity	Community participation and leadership	Traits and abilities	Social esteem	Community of value (solidarity)	Self-esteem

Source: Honneth (1995: 129); Hill (2010: 102).

The moral injury for being WLWHA has contributed to the experience of non-recognition in these three spheres of relations. In the interpersonal sphere, the non-recognition is driven mainly by their HIV-positive status, which degrades individuals’ physical integrity, self-confidence, and their status in the family and the society. Love relationships with their closest social groups provide the emotional support to overcome this form of non-recognition. In the state domain, non-recognition can be manifest in the form of denial of WLWHA rights and exclusion from public policy. This non-recognition can threaten WLWHA’s social integrity and legal relationships help to overcome these forms of non-recognition. Finally, at the societal level, the non-recognition can take the form of stigmatization, insult, and social exclusion. Solidarity relationships, however, offer mutual recognition between members of societies to counter this. I explore the WLWHA’s experiences of non-recognition at the interpersonal, state, and societal levels by analyzing qualitative data gathered from interviews and observations.

Research methods

This study uses a qualitative method that employs multiple data collection techniques as a form of ‘methodological triangulation’ (Arksey and Knight, 1999) to overcome the problems of validity and bias. First, I used interviews to explore areas of broad cultural consensus and particular understanding of people’s personal and private experiences (Arksey and Knight, 1999). The interviews were a combination of semi-structured and unstructured interviews. For the semi-structured interviews, I asked questions about informants’ social characteristics and probing questions leading to more in-depth information. I also used unstructured interviews, which allowed informants to further discuss their personal feelings and experiences. The interviews were conducted in various settings: individual interviews and joint interviews with two, three, or a small group of informants to gain more comprehensive perspectives. The average length of the interviews was approximately two hours. Second, data were also collected through participatory observation of the daily activities of these women, such as in their houses, workplaces, and during organizational activities and meetings. In total, there were 10 women observed and a total of approximately 25 hours of observation.

Data analysis was done concurrently with the data collection process, especially by analyzing what the informants had explained and connecting it to the theoretical framework indicated above. I transcribed the interviews using verbatim transcription. The transcription assisted me to identify common patterns and themes in the data. As part of my observation data, the use of reflexive notes or researcher’s memos that were incorporated into the transcriptions enabled me to provide more solid results and interpretation.

The fieldwork for this study was conducted from March to June 2014. The sensitivity of the topic investigated made it quite difficult to recruit participants at the beginning of data collection. Several key participants were identified from online media and the websites of NGOs whose work focuses on the HIV/AIDS population. From these key participants, access to other participants was much easier. In total, I interviewed 33 WLWHA in three regions: Bali, Jakarta, and Yogyakarta. These regions were chosen as they have significant numbers of people living with HIV/AIDS. According to the Ministry of Health (2017), these regions are three out of the 10 provinces (Papua, West Papua, Bali, Jakarta, Riau Islands, West Kalimantan, North Sulawesi, North Maluku, East Java, and Yogyakarta) that have higher rates of HIV/AIDS cases than the national average (28.46 per 100,000 persons). While Bali has a case rate of 149.58 per 100,000 persons, Jakarta and Yogyakarta have case rates of 66.15 and 32.54 per 100,000 persons, respectively.

The 33 participants I interviewed consisted of 10 women from Bali, seven from Jakarta, and 16 from Yogyakarta. Table 2 presents the participants’ social characteristics. Most participants were aged between 18 and 45 years old with an average age of 30. Most of these women learned of their HIV-positive status between the years 2007 and 2010. Due to Indonesia’s uncomprehensive policies and treatment for HIV cases, women who learned their status before 2008 were likely to experience AIDS symptoms. In 2008, the government of Indonesia launched a national health insurance scheme called Jamkesmas (Aspinall, 2014) that provided free treatment for HIV. This free treatment has been more extensive after the launch of the universal health coverage program in 2014. While some districts also implemented local health insurance called Jamkesda before 2008, the coverage was often limited and depended on local governments’ political will and fiscal capacity (Aspinall, 2014).

Table 2.

Social characteristics of informants.

Characteristics	Percentage	Number
Region
Jakarta	21.21	7
Yogyakarta	30.30	10
Bali	48.48	16
Age
18–25	12.12	4
26–35	45.45	15
36–45	42.42	14
Religion
Islam	75.76	25
Hindu	21.21	7
Kejawen (local religion)	3.03	1
Education
Less than junior high school	12.12	4
Junior high school	18.20	6
Senior high school	60.60	20
Diploma & university	9.09	3
Year of discovering HIV-positive status
2006–2007	42.42	14
2008–2010	36.36	12
2011–2014	21.21	7
How they were infected
Husband/partner	81.82	27
Had sex with other women	59.30	16
Are drug users	37.00	10
Has tattoo (the use of unsterile needle)	3.7	1
Other factors	18.18	6

Most of the participants in this study had only completed senior high school (20). Only one person had a diploma and two had a university degree. The vast majority of the participants were Muslim (75.76%), followed by Hindu (21.21%) and Kejawen/local religion (3.03%). Out of the 33 women interviewed, six (18.18%) had been infected due to commercial sex activities, human trafficking and rape, or blood transfusion. The remainder of the participants had been infected with HIV/AIDS by their husbands or partners who were either drug users or had had intercourse with other women. Among these 27 women, in most cases their husbands or partners had died (63%) before they learned of their positive status. The other women’s husbands or partners (37%) are still alive but the women are no longer in the relationship.

HIV/AIDS and moral injury of women living with HIV/AIDS in Indonesia

Government policies and social perception toward HIV/AIDS contributed to the development of moral injury among individuals living with HIV/AIDS in Indonesia. Particularly due to the dominant role of religion in Indonesian society, the religious standard of morality has dominated social discourses and responses to HIV/AIDS in the country. Accordingly, the government of Indonesia considered HIV/AIDS a disease caused by the violation of religious norms (Rahman and Faddad, 2012). Furthermore, the government conceptualized HIV/AIDS as a disease of the ‘other’ with ‘high-risk behaviors’. This partly results from the fact that it was a Dutch tourist who was the first case of HIV/AIDS to be officially identified in the country. This further strengthened the image of HIV/AIDS as an ‘imported disease’ (Wald, 2008: 123) that would not affect ‘us’ as the ‘not other’ (Hsu et al., 2004: 209). This assumption contributed to the government’s delayed response to addressing HIV/AIDS in Indonesia, which then mainly focused on prevention efforts for those who were considered as ‘high-risk’ groups.

Although government responses toward HIV/AIDS have changed, religious morality still plays an important role in defining HIV/AIDS in Indonesia. For example, in relation to the ‘ABC approach’ of HIV/AIDS prevention (Abstinence, Be faithful, and Condom use), the government focused more on A and B for the whole population by emphasizing family resilience and promoting sexual monogamy based on Islamic morality (Kroeger, 2000). The family is often used to promote the state agenda on development, national citizenship, and moral projects (Platt et al., 2018). In relation to marriage, although Indonesian men were encouraged to engage in monogamous marriage, the practice of polygamy remains relatively common and there was no guarantee that married men did not have extramarital relationships (Jacubowski, 2008). In contrast, C was targeted only at the key-affected populations. Campaigns for safe sex through the use of condoms have been commonly rejected by many religious groups that consider such a campaign as a promotion of free sex (Rahman and Faddad, 2012). These examples suggest that HIV/AIDS responses based on religious morality could weaken prevention efforts.

The domination of morally based interpretations of HIV/AIDS leads those living with HIV/AIDS such as WLWHA to be vulnerable to moral injury. The image of HIV/AIDS as a moral disease renders a positive HIV/AIDS status into a moral injury. WLWHA are often considered deviant from the ‘socially accepted standard of normality’ (Liamputtong, 2013: 3) and are often characterized as women with an immoral character (Mason et al., 2001). Furthermore, WLWHA are more vulnerable to stigmatization and moral injury because it is a sexually transmitted disease. Unlike the case with infected men, they are often considered as ‘vectors’, ‘diseased’ and ‘prostitutes’ (Ndinda et al., 2007: 93).

These dominant assumptions have led WLWHA to feel shame, guilt, and fear that they will experience stigma when others learn of their positive status. Although many women became infected through socially accepted behaviors (sex with their spouse), they still perceive their HIV-positive status as a moral injury. In the context of stigma, this condition can be considered as self-stigma or internalized stigma, which develops through self-blame and self-deprecation (Liamputtong, 2013). In this study, for instance, many of the participants blamed and devalued themselves for their HIV/AIDS status, since they too have been influenced by the dominant moral discourse on HIV/AIDS. One participant mentioned that she never imagined that she would have an HIV-positive status:

In the past, every time I saw information about HIV/AIDS on TV, radio, or in a magazine, I did not want to know about it, because I believed that it did not belong to me. It is a disease that I would not ever have as I am a good woman and I am only a housewife with one sexual partner, my husband. So, I never thought that I would have HIV/AIDS and I was very shocked the first time I knew my HIV status. (YK, Interview)

The women’s rejection of their HIV status and the association of HIV/AIDS with reprehensible activities have strengthened the image of HIV/AIDS as a disease of ‘others’ who engage in ‘high-risk behaviors’. Those who believe that their HIV status stems from their own misbehavior express self-blame in terms similar to that below:

I did not blame anyone for what happened to me. I blamed myself because I had this virus from my previous high-risk behaviors. I blamed myself because I did not listen to my mom’s advice. My mom had prohibited me from having a sexual relationship with my friend. (NR, Interview)

Due to the negative association attached to HIV/AIDS and their own self-blame, almost all of the women interviewed in this study hide their positive status from other people. They are afraid that their HIV status would be a source of further disrespect and non-recognition from others, such as family or society. Some of the participants in the study continued to keep their positive status hidden from their family, friends, and society in general, even after the completion of the interviews. In this context, their HIV status has degraded their self-confidence, self-respect, and self-esteem. Additionally, similar to the findings of Lee et al. (2002), this study also found higher levels of self-stigmatization among those women who had recently learned their HIV status, received less support from their family, knew fewer other people with HIV/AIDS, and had not participated in HIV/AIDS support groups.

The findings of this study also confirm women’s vulnerability to self-stigma, as suggested by Butt (2015). In her study, she found that women were likely to consider their positive status as ‘takut’ (afraid), which led to the experience of self-stigma. Similarly, WLWHA in this study considered their positive status in terms of being ‘afraid’. They often hid their positive status from others since they were afraid of being stigmatized and discriminated against. As best as they could, these women attempted to interact with others as if they were active and healthy individuals. They did not want to reveal their HIV/AIDS treatment to others. Consequently, there were no significant differences in the observable behaviors of these women and others.

My participatory observation reveals that the use of secrecy as a strategy to deal with the potential discrimination has been driven by the need of these women to maintain their domestic relations and public social role. The latter is especially important for those who were outside of HIV/AIDS organization networks and who actively participated in community activities. For these women, maintaining their public social role was the main reason behind the strategy to keep their seropositive status hidden from others.

Other than negatively affecting self-confidence, self-respect, and self-esteem, self-stigma has also contributed to depression, intention to commit suicide, and rejection of medical treatment among WLWHA. The last behavior often worsened these women’s physical health by increasing their vulnerability to HIV/AIDS-related symptoms, such as tuberculosis, diarrhea, and drastic weight loss. In contrast, those who did not experience self-blame and did not need more time to accept their positive status were likely to have better psychological and physical health.

Further exacerbating the problem of moral injury among my study participants was their low social and economic status. Although it cannot be generalized, similar to the global trend (Wojcicki, 2005), most women in this study are from low socioeconomic backgrounds. Regarding education, only a few have a university degree. Economically, they were housewives who depended on their husbands’ income when their husbands were still alive. After their husbands passed away, some were facing economic hardship. Additionally, their status as a widow can also be a source of moral injury, especially in rural areas where many people still apply negative stereotypes to widows, such as being perceived as flirtatious, sexually available and attractive, a threat to someone’s marriage, etc. (Parker, 2016).

In short, the religious standard of morality has shaped government responses to HIV/AIDS and the WLWHA’s experiences of moral injury. Their low socioeconomic status also contributed to these women’s vulnerability to moral injury. These experiences have led to self-stigma/self-blame which in turn contributes to further negative outcomes and non-recognition relationships.

Negative impacts of moral injury: Forms of non-recognition among women living with HIV/AIDS

The experience of moral injury led to several forms of non-recognition encountered by the study’s participants in interpersonal, state, and societal domains. In interpersonal relationships, for instance, due to their subordinate position in the family, some women experienced rejection and non-recognition from their family (mostly from their family-in-law). Some families even removed the women’s children from them as they thought their grandchildren were in danger of being infected. DS, one of the respondents from Bali, for instance, told me that:

My husband’s family-in-law still holds mystical beliefs. They believed that I was responsible for my husband’s death as they thought that I used black magic to make him sick. Nine months after my husband’s death, they drove me out from his family house. I’m now renting a room in Denpasar with three of my children while the youngest is still with my parents-in-law. (DS, Interview)

Evidently, the non-recognition in interpersonal relationships has threatened the WLWHA’s physical integrity, self-confidence, and their status in the family and society. On the state level, moral injury occurs through the denial of these women and their exclusion from public policy. In previous years, for instance, people living with HIV/AIDS had to buy their own medicine for their monthly ARV (antiretroviral) treatment. Recently, due to policy changes, the state has provided free medicine and treatment for those infected with HIV/AIDS (Schmitt, 2012). Previously, in some regions like in Yogyakarta, WLWHA received free ARV treatment through the local health insurance scheme, Jamkesda. However, several WLWHA mentioned that to access this free health care, they had an identification code that showed that they were people with HIV/AIDS. In the past, only a few hospitals had special units for HIV/AIDS medical check-ups and treatment. Those who went to these special units were easily identified as HIV-positive individuals. In 2012, the Ministry of Health implemented a continuum of HIV care to integrate prevention, treatment, and care for the whole population (Januraga et al., 2018). Additionally, my informants mentioned that when they have been prescribed certain free medicine and it causes side effects to their health, it is quite difficult to directly change their prescriptions.

Although these codes and designated spaces no longer exist, they contributed to continuing stigmatization and discrimination from health care staff, which contributed further to the negative impact on participants’ health conditions (Merati et al., 2005). One of the participants in the study, for instance, explained to me, and this was confirmed by several WLWHA during the interview, that she refused to receive any treatment from the hospital as she had experienced disrespect and discrimination from health staff. After her health condition worsened, and she was convinced that discrimination could be avoided, she finally agreed to start her medical treatment.

In the context of society, moral injury occurs in the form of stigma, insult, and exclusion. However, since most of the women in the study hide their positive status from society, they rarely experienced stigma and discrimination. Stigma and discrimination mostly came from self-stigma, fear that others would stigmatize them once their positive status was known, and from health care staff as people with access to their medical records. Only one of the participants in the study shared her experience of rejection and humiliation with others. She had been humiliated and exiled from her home after one of her neighbors who worked at her hospital saw her in the HIV/AIDS treatment section soon after her husband had died from HIV/AIDS. The lack of HIV/AIDS knowledge even among medical staff can lead to discrimination and non-recognition. In this case, the information that she was infected with HIV/AIDS became a rumor in her community. Several people suggested she move to another residence, as they were afraid they could become infected with the virus, and also suspected her of having the virus due to her morally deviant behavior.

The experiences of non-recognition in interpersonal, state, and societal relationships might endanger WLWHA’s well-being and identity. This non-recognition, however, can be the source of struggle to achieve more equal relationships.

Struggles for recognition: Regaining self-confidence, self-respect, and self-esteem

Although moral injury can have a negative impact on an individual’s psychological integrity, it can also be the source of a moral struggle to regain their identity. My interviews with WLWHA suggest that the experience of self-stigma typically abated when these women regained their self-confidence, self-respect, and self-esteem, which in turn form a sound basis for WLWHA to continue their life and survive the moral injury. One of the respondents in this study, who has been an HIV/AIDS counselor for several years, mentioned that:

I think the main challenge for people/women with HIV/AIDS is self-acceptance. When those who just learned of their HIV-positive status can accept themselves, they will be fine and continue their life. However, if they blame themselves and cannot accept what happened to them, it will worsen their psychological and physical health. (HT, Interview)

It is interesting to note that although HIV-positive status has been a moral injury for these women, most of them have recovered and survived from these injuries and decided to continue their life with love, rights, and dignity. This recovery process has contributed to the production of mutual recognition and respect in the three levels of interaction. First, in interpersonal relationships, for some women, the family has been the main reason and the greatest motivator for them to regain their self-confidence and continue their life. Besides supportive parents, many of the participants mentioned that their children were the main source of strength for them. They wanted to continue their life for the sake of their children. Additionally, due to their lack of understanding of HIV/AIDS before learning about their positive status, some of their children were also infected with HIV. Therefore, many of these women believed that their struggle for recognition was also their struggle for their children.

In addition to the family, friends also play an important role in re-establishing self-confidence for the WLWHA. All my participants were involved in HIV/AIDS peer support groups (KDS/Kelompok Dukungan Sebaya). Participation in these groups allowed them to get to know others who also had HIV-positive status. This community has helped these women to recover from the psychological problems that commonly develop on learning about their positive status. It has also helped them to deal with other complex problems that they have had to face after their husband’s death, such as the loss of economic support, lack of support from their husband’s family, or keeping their positive status hidden from family members. These peer support communities provided the place for these women to share their problems and be happy with others who have similar problems. These communities are mostly coordinated by local NGOs working in HIV/AIDS. Some women in this study were affiliated with more than one NGO. Additionally, most of these women also participated in the Association for Indonesian Positive Women (IPPI/Ikatan Perempuan Positif Indonesia), an organization for women with HIV/AIDS. This association was established by and for women who live with and are affected by HIV/AIDS. This association’s primary focus is to ‘empower women living with HIV and affected women to attain equality and well-being in their health, social, educational, and economic aspects’ (IPPI, 2017). This organization has community members in almost every region in Indonesia (25 out of 34 provinces).

Other than friendship, participation in the HIV/AIDS support groups benefits WLWHA in many different ways. They received more information and knowledge about HIV/AIDS, reproductive health and rights, gender empowerment, economic support, and, importantly, peer support that helped them survive and continue their future life as women with HIV/AIDS. Their interactions with others created mutual recognition and sympathy among group members, which helped them to regain their self-confidence as well as their self-respect.

Based on my observation and interviews, the level of women’s participation in these organizations or groups has contributed to different levels of self-development and forms of recognition. As part of the interpersonal relationship, participation in these organizations has helped WLWHA to gain emotional support and recognition in forms of love and friendship from others who also participate in the organizations. This emotional support has enabled them to regain their self-confidence. Therefore, those who actively participated in these organizations showed more self-confidence than those who were not active.

Additionally, active participation by these women in these organizations has enabled them to develop their self-respect. Their mutual recognition in the organizations and groups has encouraged them to develop moral responsibility and to struggle for equal treatment from the state. Women’s active engagement in various activities such as advocacy and campaigns for government recognition and inclusion in public policy has helped them to achieve legal/rights recognition. For instance, one of the participants in the study who was infected by her husband and went on to infect her daughter experienced discrimination in her workplace and decided to work and fight for the rights of people with HIV/AIDS:

We are working on monitoring and advocacy of ARV distribution and medicine-related problems in the field. We work with other communities (groups). We work as the mediator between these communities and the Ministry of Health. I have to be brave to fight for something that some of my friends cannot do, fight for our rights. (AY, Interview)

Similarly, the self-confidence and self-respect gained from their participation in support groups and organizations have enabled them to establish their self-esteem, which refers to an individual’s sense that they are special and unique. Self-esteem is commonly based on traits or abilities which are valued highly by society. The participation in these organizations has helped these women to believe that, as a part of society, they have something valuable to offer that could prove they are morally responsible even though they are HIV-positive women. Many of the participants mentioned their commitment to making a positive contribution to society. Therefore, many of them decided to be peer supporters (PS/Pendamping Sebaya) who help other people with HIV/AIDS to recover from their psychological problems, and help others from being victims of discrimination from health officials and others. Some other women even worked in public health centers as counselors for HIV/AIDS-related problems. This work in turn draws on the relationships of solidarity established through the mutual recognition that these women received from their participation in these organizations.

Besides their contribution to the HIV/AIDS communities, participation in the organizations has helped these women to remain connected to the broader environment by showing their commitment to improving society in general. These women, for example, have actively participated and initiated some religious and community development activities. This participation has helped these women to develop their self-esteem and be valued and accepted by society.

Conclusion

This article has explored the experience of moral injury among WLWHA and the ways they survive this moral injury. HIV/AIDS-positive status has been the source of moral injury among WLWHA, which, in turn, has been the source of their experience of non-recognition and disrespect, and has had a negative impact on the development of their psychological integrity in terms of self-confidence, self-respect, and self-esteem. The stories of the women in this study have shown that their seropositive status has indeed been a source of moral injury in their life. They often experienced self-blame, psychological and HIV health-related problems. Additionally, their subordinate status in their family and society led to forms of disrespect and discrimination such as rejection by their family, health officials, and others. Finally, these women’s low socioeconomic status and their economic dependence on their husband’s income as well as their status as widow have been other sources of moral injury.

Nevertheless, other than being the source of disrespect, moral injury can also be the source of social struggle for recognition, in interpersonal, state, and societal relations. The experiences of the WLWHA in this study have revealed that support from family such as parents and children as well as from friends can help them to regain their self-confidence and recover from self-stigma. Importantly, the transformation of moral injury into the struggle for recognition has been mediated by the role of peer support communities and HIV/AIDS organizations. These groups assisted women with HIV/AIDS to re-establish their interpersonal relationships with other people with HIV/AIDS (peer support interaction), as well as negative-status people, to regain their self-confidence; to build their legal relationship with the state through political participation and public policy advocacy activities, to improve their self-respect; and to forge a relationship of solidarity with other members of society in general, to achieve their self-esteem and dignity.

In short, using Honneth’s theory, the findings of this study have highlighted the importance of women’s (WLWHA) agency in surviving moral injury and transforming this moral wound into action for social and public policy changes. Nevertheless, Honneth’s theory has ignored the importance of structural factors that contribute to subordination, discrimination, and misrecognition. Therefore, I argue that it is also important for various stakeholders, such as state, religious figures, or society, to play an active role in transforming structural factors such as institutionalized standards of morality and values that subordinate women’s position in society.

This study is limited to few cases in western parts of Indonesia and lacks the experiences of WLWHA from Eastern Indonesia and from Christian and Buddhist religious backgrounds. Further research, therefore, would benefit from a comparative analysis of broader social, religious, and cultural contexts. It is also important for future research to address structural factors such as religious and state institutions and their contribution to prevent and reduce the experiences of HIV/AIDS-related moral injury in society.

Footnotes

Acknowledgements

I would like to thank Sirojuddin Arif and anonymous reviewers for their inputs and suggestions. I would like to dedicate this article to all strong women who have been the informants in this study. All errors and omissions are mine.

Funding

This study would not have been possible without generous funding from the Center for Research and Publication (LP2M) UIN Jakarta.

ORCID iD

Iim Halimatusa’diyah

Author biography

Iim Halimatusa’diyah is a faculty member at Department of Sociology at State Islamic University (UIN), Syarif Hidayatullah Jakarta. She was a Fulbright PhD Presidential Scholar and received her doctoral degree in sociology from Iowa State University. Her research analyzes the relationship between gender, ethnicity, health, and development. Her research has been published in Journal of Civil Society, Australian Journal of Asian Law, Southeast Asia Research, Journal of Rural Social Sciences, and Journal of Rural Studies.

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