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The Power of Silence: A Medical Anthropological Approach to AIDS Care Narratives

Periodic Reporting for period 2 - AIDSsilences (The Power of Silence: A Medical Anthropological Approach to AIDS Care Narratives)

Reporting period: 2018-01-01 to 2018-12-31

"How do silences structure and surround narratives of illness and care? And how may understanding such silences improve healthcare practices? This project addresses these questions by developing theoretical and methodological tools for attending to silences in illness narratives. It does so by drawing on qualitative empirical data that concern one of the most haunting epidemics of our time: HIV/AIDS. As people with HIV/AIDS remain stigmatized in most parts of the world, and social scientific attention to their active uses of silence is emerging, it is crucially important to develop better knowledge of the different roles played by silence in AIDS care interactions. Increasing the attention to the unspoken, unspeakable and that which lies beyond articulation among social scientists, policy makers, and healthcare practitioners will therefore have huge benefits to society. The key objectives of this study are:
1. To conceptualize how silences shape AIDS care, by analyzing narratives of people living with HIV/AIDS and caregiving institutions
2. To theorize the relation between silence and narrative
3. To develop a qualitative methodology for recognizing, inquiring into, and understanding respondents’ silences
To attain these objectives, the project draws on ethnographic material gathered in AIDS care interactions in Indonesia as well as on interviews with policy makers in the field of Global Health. It particularly develops tools to theorize and interpret silences based on person-centered ethnography, narrative phenomenology, and a sustained ethical reflection on social scientific approaches of silences and care.

Conclusions of the action include:
1. theorization of the relation between policital and psychological silences (in peer-reviewed publications)
2. development of the concept of ""narrative navigation"" to study narratives and silences in health care (in peer-reviewed publications)
3. continuing reflection on the ethics and methodologies of studying the unknown, unspoken, unspeakable (in special issue in preparation, on popular weblog"
During this project, the researcher has achieved:
1. A significant theoretical grounding through the consistent participation in several graduate courses and seminars in the outgoing phase (Harvard University), and regular conversations with highly esteemed scholars in the field of narrative, public health, and phenomenology.
2. The launching of the website and weblog, which has generated broad interest and a number of excellent blogposts so far.
3. The co-organization of two well-attended panels on silences during the Annual Meetings of the American Anthropological Association in November 2017, and the European Association of Social Anthropologists in August 2018.
4. The co-organization of a panel on waiting and care at the Annual Conference of the Association of Asian Studies in March 2018 and a panel on temporalities at the Annual Meetings of the American Anthropological Association in November 2018.
5. New scholarly collaborations in the fields of silence, narrative and care, leading to co-writing, co-editing a special issue collection and organizing panels at academic conferences.
6. The co-organization of two academic workshops in August and November 2018.
7. Keynote at the University of Melbourne. Three other invited academic talks at US universities.
8. Participation in three academic workshops.
7. Publication of two single-authored peer-reviewed articles in top-tier academic journals, March and August 2018. A third article has been prepared for submission in a special journal issue. Submission of a edited volume book chapter.
8. Substantial writing of ethnographic monograph manuscript on AIDS silences. An ethnographic monograph manuscript based on previous research has been submitted to a prominent American university press and is under review.
9. Dissemination of knowledge through a weblog, academic workshops (including in Indonesia, the US, and the Netherlands), a policy brief, and a public lecture.
10. Submission of grant application.
"The topic of silence has started to attract major interest both within and beyond the field of anthropology, as attested by recent publications in the field and the attention for the public website and academic panel co-organized by the researcher. The scholarly experiences during the outgoing phase have led to novel insights into the ambiguities of silences in healthcare, the strategies with which people deploy silences, and the historical and political hauntings that silences may imply. A careful scholarly consideration of the ethics of writing and interpreting silences, dependent on the social context of research, is much needed. The researcher has developed the concept of ""narrative navigation"" to study narrative and silence in health care interactions. Results with a widely expected impact include two peer-reviewed articles published, a special issue with an individual article and introduction in preparation, a policy brief on HIV care in Aceh for governmental and non-governmental organizations. Societal implications are expected in the field of AIDS care in Indonesia and beyond, as well as the prioritizing of the topic of healthcare and silence in scholarly and healthcare debates.