Between the seen and the unseen: HIV in Indonesia
Part 1Session 5
Thu 11:00-12:30 Room 0.18
Part 2Session 6
Thu 14:00-15:30 Room 0.18
- Annemarie Samuels Leiden University
- Benjamin Hegarty University of Melbourne
- Teuku Ferdiansyah Thajib University of Leipzig
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HIV and Marital Deception: The Complex Story of HIV Transmission Among Women in South Sumatra, Indonesia
Najmah Najmah Sriwijaya University
Sharyn Graham Davies
Over the last decade in Indonesia, the largest group of new HIV cases, is women of reproductive age (15 – 49 years), at forty percent (Ministry of Health, 2018). This trend is underpinned by the broadly held and fallacious belief, that heterosexual, married women are not at risk of HIV. This study aims to challenge this misconception and investigate the complexity of HIV transmission, with a focus on HIV susceptibility among married women in Indonesia.
The “cascade of care” and the future of HIV in Indonesia
Benjamin Hegarty University of Melbourne
Since the early 2010s, Indonesian HIV programs have generally embraced a globalized concept of “treatment as prevention.” This model of public health prioritizes pharmaceutical interventions which target key populations (those populations both most at risk and who are positioned to respond to the epidemic) such as pre-exposure prophylaxis (PrEP) and the suppression of viral load through adherence to antiretroviral therapy. In reality, access to medical technologies like PrEP and viral load testing remain far out of reach for most Indonesians in the public health system. Nevertheless, the accompanying data infrastructure in the form of the “cascade of care” (a way of tracking progress by collecting data about individuals as they move from positive diagnosis, to testing and periodic screening for a suppressed viral load) is firmly in place and shapes many ordinary encounters with HIV treatment and prevention. In this paper, I draw on queer theorist Tim Dean (building on Preciado) to ask: How is the Indonesian subject of HIV prevention and sexual risk integrated within a global “antiviral paradigm”? Drawing on longterm fieldwork among poor men who have sex with men (MSM) and trans women, and about HIV policy, this paper is an ethnographic interpretation of the “antiviral paradigm.” I take issue with two assumptions: queer theory’s assessment that there is (or will inevitably be) a future global pharmaceutical empire that leads to greater control at the individual level, and public health’s “cascade of care,” a normalizing tool at the population level. In Indonesian national and global discourse of public health, MSM are most certainly imagined within the “cascade of care.” But for the majority of people who rely on the public health system, few of these technologies (ongoing monitoring through viral load testing testing) are available. I argue that rather than a linear trajectory towards greater influence of molecular surveillance or interiorisation of medicine, queer theory’s individualising discipline and public health’s population-level control both miss the fact that an antiviral paradigm is instead concerned with governing the future. Producing alternatives to this theoretical vocabulary means taking seriously what the future means for poor MSM and trans women in Indonesia.
Truths We See and Speak: Shortcomings of HIV-related Care for Gay Men and Waria in Bali
Sylvia Tidey University of Virginia
How successful are HIV-related prevention and care initiatives when members of its most vulnerable target populations routinely die premature deaths? If we look at such initiatives in Bali, Indonesia, we would answer that it depends on how we look at it. From one perspective, Bali’s abundant and stigma-free testing, counseling, and treatment possibilities suggest a success story. From another, the all too common tendency among otherwise healthy, young gay men and waria (transgender women) to stop taking life-saving antiretroviral (ARV) medications or refuse starting them altogether suggests a less triumphal story. The success of Bali’s HIV-related efforts, then, is closely tied to which of these “truths” one chooses to see – or unsee. Indeed, as phenomenological and existential anthropology teaches us, that which is seen (and unseen) is never a fait accompli, but an ever-unfolding event in which intersubjective interpretation, contestation, perspective and positionality lend an ambiguity to perception and the perceivable. This paper suggests that this ambiguity, or the need to maintain multiple modalities of visibility, is of crucial importance to understanding gay men and waria’s unwillingness to adhere to ARV regimens. For example, while “being out” and “opening up about one’s status” are encouraged in many institutional HIV- and LGBTQ settings, these same manners of being seen can pose serious relational risks in intimate settings of familial care. This paper will pay particular attention to the tension between seeing and speaking, or to the role of language in intersubjectively producing what is seen (and unseen, ignored, unrecognized). It argues for the importance of maintaining opacity between the seen and the unseen in gay men and waria’s pursuit of a good life. It will do so by closely attending to the “ordinary enactments” (Ochs 2012) and “pragmatics” (Duranti 2009) of language” in producing what can be seen and needs to remain unseen – and the ethical implications of this. By paying careful attention to the nuances and contexts of speaking/not speaking and seeing/not seeing, this paper ultimately aims to contribute insights to HIV-related care for members of marginalized communities in general, to whom not just one’s happiness (Ahmed 2010) but possibilities for life itself are often conditional on others. After all, to borrow from Jean-Paul Sartre (1968), should the truth of the success of HIV programs not be decided by asking how it looks in the eyes of the least favored?
Ageing with HIV in ten Indonesian cities
Teuku Ferdiansyah Thajib University of Leipzig
My presentation is based on the findings of the preliminary study around practices and experiences of ageing with HIV in Indonesia, which is conducted as peer-led research and initiated by Jaringan Indonesia Positif (JIP). JIP is a network of People Living with HIV (PLHIV) in Indonesia. Following the global advancements in antiretroviral treatment (ART), the life expectancy of PLHIV has increased dramatically. Due to its novelty, however, the full nature and consequences of ageing with HIV remain largely unknown, posing challenges for policy makers, medical professionals, and those directly affected. As a country that has one of the fastest-growing HIV epidemics in Southeast Asia but also with the lowest uptake of care and treatment, Indonesia provides a compelling case study for understanding how longer life spans for PLHIV have brought in diverse and complex social challenges and responses, specifically in managing their care and support. The burdens of care in later-life living with HIV in the country are configured by multiple health vulnerabilities, social inequalities, and the lack of policy concern.In general, HIV prevalence, including epidemic spread and disease burden, is closely monitored in Indonesia. Yet most epidemiological measures stop at the age of 49. Treatment and care programs that are made available nationwide are also exclusively provided for young adults and children, while older individuals tend to be left out. The discursive ‘silence’ on issues of ageing among Indonesians who are growing older with HIV is further reflected by the very scant literature on this matter, with a few exceptions such as the limited research conducted in medical studies (Pendet et al. 2020, Ainun et al. 2016) and online information pages provided by local HIV/AIDS NGOs such as Spiritia Foundation (2014) and Kebaya Foundation (2020). What remains largely misunderstood or invisible are the lived experiences of those who are ageing with HIV and their everyday struggle with the challenges that come with embarking on a “lifetime journey with antiretroviral therapy” (Mbonye et al. 2013). This mixed-method study is specifically designed to infer information about the wider population of people who are ageing with HIV in the absence of any other corroborating information. It uses a qualitative approach to analyse the data collected through purposive sampling survey and in-depth interview conducted between October 2021-February 2022. The survey involves 200 study participants from 10 Indonesian cities recruited based on the two criteria of inclusion: (1) people living with HIV/AIDS who are 50+ years old and people aged 18-49 who have lived with HIV and are on ART for at least 10 years. The in-depth interviews are conducted online with 20 participants selected from the survey participants based on their interest and availability. The study findings point to quality life issues that are entangled with biomedical and social dimensions of engagement with care, later-life living with HIV, and its related treatent.
HIV/AIDS in queer community zines from the New Order
Ben Murtagh School of Oriental and African Studies
Publishing of queer zines flourished in Indonesia in the 1980-90s. Some publications ran for just a few issues while others were published consistently for many years. This flourishing in the era before the internet corresponds with an increasing organisation and visibility of Indonesian lesbian and gay communities in several cities across the archipelago. These community magazines provided vital spaces for queer Indonesians to learn more about themselves and others like them, to read about ideas, stories, and news of interest from within Indonesia as well as overseas, to publish personal ads, and to find out about services aimed at or friendly to queer Indonesians.
Narratives of finitude and chronicity with HIV in Aceh
Annemarie Samuels Leiden University
This paper tells the story of one HIV-positive mother and activist, who I came to know during a year of fieldwork on HIV care in the Indonesian province of Aceh. The paper has two objectives. Firstly, by drawing on her story of becoming an activist, it aims to shed light on the development of HIV care and activism in Aceh. Secondly, by focusing on her ideas about the future in light of her past experiences, it theorizes how intersecting temporal orientations shape narratives of living with HIV. In particular, I show how future-oriented narratives reflect and refract aspirations of (national) belonging in light of personal experiences of death and Islamic orientations towards death and the afterlife. As the horizons of this one activist’s striving for political and social recognition of people living with HIV in Indonesia and her personal dream of a ‘normal’ family life were shaped by a religious orientation to fate, acceptance and divine judgment in the afterlife, her stories were also shot through with the recurrent experience of friends dying of AIDS and the unstable chronicity of living with HIV in the present. The silences and solitude in the interstices of her imagination of the future in the face of multiple endings – of others’ lives, her own life, the end of the world after life, and the end of HIV – point at the delicate and effortful work of nurturing hope in structures of social inequality. They moreover reveal how in strategizing visibility in HIV activist work, individual and collective moral demands come to intersect and conflict in ways that require a careful narrative navigation.
In Indonesian political and social life, HIV is both seen and unseen in different ways. Since the first cases were discovered in Indonesia in the 1980s, HIV has come to occupy a prominent role in public life; as a reflection of diminished morality of the nation, as a symbol of the triumph of modern medical science through the implementation of widespread anti-retroviral therapy, and the reflection of mobilisations of human rights premised on access to healthcare. Yet this has regrettably had only a limited effect on expanding forms of knowledge and care for those who live with HIV or care for them. Rather, cultural understandings of HIV and AIDS in Indonesia seem to rest on something of a paradox: an increase in knowledge about HIV, accompanied by increased forms of visibility in the mass media and on social media, has not necessarily resulted in more understanding about the epidemic or the virus. Similarly, global technologies for treating HIV in the form of testing, treatment and viral load testing have had only limited efficacy, as demonstrated by high numbers of people “lost to follow up” (Lazuardi 2019). The HIV epidemic in Indonesia is in these and other ways both seen and unseen. Correspondingly, the impact of this paradox is acutely felt both by people living with HIV and those people and communities that are most affected by the virus. This panel aims to investigate the breadth of meanings given to HIV in Indonesia, in order to forge new conceptual vocabularies which can pursue new visions of social justice, empathy and care.
Recent engagement in the United States has shown how a preoccupation with the visibility of HIV as a white, urban and gay male phenomenon obscures the ongoing impact of the pandemic on gender and sexual minorities (including trans women), people of colour, black and indigenous people in the context of historical legacies of colonial exploitation (Cheng, Juhasz, and Shahani 2020). The understanding of an “undetectable” viral load, now common as a measure in the global end of AIDS, relies on visibility at the microscopic level, eschewing community forms of care in favour of pharmaceutical solutions (Persson et al. 2016). Yet although shaped by globalised knowledge, understandings and interpretations of HIV—and their relationship to race, gender, sexuality and class—unfold differently in a post-authoritarian context where a dominant “regime of visuality,” is one in which “the compulsion to see and be seen is continually brought to crisis by the terror of seeing and being seen” (Steedly 2013, 262). In Indonesia, the HIV epidemic has become visible over the past three or so decades coinciding with a postauthoritarian context where “murkiness is itself a structural feature of politics” (Bubandt 2008, 812). The visibility of HIV in Indonesia thus emerges out of distinctive histories, including cultures of gender and sexual visibility and understanding of health and illness (Hegarty 2018; Thajib 2018; Samuels 2016). The papers on this panel will demonstrate how the experience of HIV specific to Indonesia in its socio-historical context, but also offers critical theoretical insights for the expansion of HIV care globally. We aspire for the panel to be both interdisciplinary and diverse, encompassing a wide range of researchers working in different geographical areas in Indonesia, disciplinary training, and institutional affiliation. To this end, we invite papers which address HIV in Indonesia, across fields of medical anthropology, history, cultural studies, and public health.