(P30)
Social death by neglect in health and health systems
Location A4-004
Date and Start Time 06 Dec, 2018 at 09:00
Sessions 1

Convenors

  • Kristin McBain-Rigg (James Cook University) email
  • Stephanie Topp (James Cook University) email
  • Maxine Whittaker (James Cook University) email

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Short abstract

The theme for this panel is social death associated with neglect of disease and suffering in health and medical systems. This encompasses neglected tropical diseases, stigma, accessibility and navigation of complex systems, and neglect in forced relocation situations.

Long abstract

Disease and suffering have long been the attention of social scientists, and this panel seeks to gather contemporary studies of the 'social death' associated with neglect of disease and suffering in health and medical systems. Stigma is socially and culturally constructed and impacts upon people's and communities' ability and willingness to seek care, responses of health care providers to them, and scientific exploration of these "illnesses". Many, but not all, are neglected tropical diseases, causing major human, social and economic suffering in affected individuals and communities, but often not to a scale to "warrant" national and international attention when using constructs such as Disability Adjusted life years and resource availability to set prioritization. People living on the fringe of access to health services - due to location, mobility, racism, or gender, are often label "too hard to reach", "ignorant" or "non-compliant" and denied health services that could prevent, treat or manage deadly, disabling and disfiguring conditions. Discussions of stigma and hope, the slow death associated with lack of access or ability to navigate complex biomedical systems are considered. How much has really changed, in the face of modern pandemics and biosecurity measures? How should we deal with these threats in an increasingly mobile world (when much of the mobility is forced relocation)? How do people deal with these imminent threats in everyday practice - if at all - to ensure life goes on, in the face of death?

This panel is closed to new paper proposals.

Papers

'HIV is the least of my worries': social death by neglect in people living long term with HIV in Queensland Australia

Authors: Lisa Fitzgerald (University of Queensland) email
Allyson Mutch (University of Queensland) email
Chris Howard (Queensland Positive People ) email
Andrea Whittaker (Monash University) email
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Short abstract

Biomedical prevention is heralded as the 'game changer' in HIV. In this paper, we draw on findings of a qualitative longitudinal study to examine long-term positive people's experiences of social death arising within the contemporary biomedical HIV landscape.

Long abstract

As biomedical prevention is heralded as the 'game changer' to 'end HIV/AIDS', it is important to consider how diverse communities of people living with HIV grapple with discursive constructions of HIV citizenship, embedded in policy which increasingly focus on biomedical solutions. In this paper, we draw on Mendenhall's (2012) conceptualisation of syndemic suffering, the interactive relationship between forms of violence, social suffering and chronic disease, to examine long-term positive people's experiences of social death arising within the contemporary biomedical HIV landscape.

This paper draws on findings from the Living Positive in Queensland study, a qualitative longitudinal study of aging, place and social isolation involving in-depth interviews conducted over three time periods (commencing 2013) with 72 participants aged 35, who live in rural and regional Queensland. We explore how participants grapple with long term complex health issues, economic marginalisation, structural vulnerability and precarity arising from shifting HIV policy, funding cuts and the dismantling of psychosocial services. We conclude that the focus on biomedical prevention has the potential to reinforce and create new forms of social death by neglect, particularly among early generations of people living long- term with HIV. Policy makers and service providers must recognise that both chronic social/structural issues and chronic health conditions influence health and well-being and the social must be reimagined to negate the slow death by neglect emerging among some people living long-term with HIV.

Navigating local systems to stay alive: a study of engagement with HIV care in an era of decentralised healthcare in Indonesia

Author: Elan Lazuardi (UNSW Sydney) email
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Short abstract

HIV intervention programs are often designed with specific "target groups" in mind. Based on a study of everyday clinical practices in urban HIV testing and treatment services, this paper will unearth institutional processes which govern the localization of HIV intervention strategies in Indonesia.

Long abstract

In a socio-economically and culturally diverse country such as Indonesia, HIV intervention programs are often designed to give priority to specific groups in the community - often referred to as "target groups" or "key populations". However, with priorities set by government or international donor agencies in a top-down approach, local actors providing or accessing clinics are often left with little room to improvise.

Based on a study of everyday clinical practices in a number of urban HIV testing and treatment services, this paper will unearth institutional processes which govern the localization of early testing and treatment for HIV infection strategies in Indonesia, and explore the extent to which these processes are evident in accounts of providing and accessing HIV services.

Engagement with HIV care in health care settings is often characterised by a complex set of power relations between clients and healthcare workers, with those who have personal or peer-based connections doing much better at knowing how to navigate local systems effectively. With programs intended to target communities defined as "hard to reach" due in particular to their sexual identity (eg. 'men who have sex with men) or sexual practice (eg. 'sex workers'), there is little room for clients and healthcare workers to examine the way that their own values influence their interactions. As a result, clients' needs are often neglected with respect to the aspects of their lives which are associated with stigma, creating considerable barriers to good care.

Creating health inequity: political construction of statistical reality and institutional barriers to access to health services in Bali Province, Indonesia

Author: I Nyoman Sutarsa (Australian National University) email
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Short abstract

This paper explores the social and political construction of knowledge to illustrate the instrumentalist nature of the biomedical and public health approaches to knowledge production, and how the strategic use of this knowledge impedes access to health services among the marginalised group.

Long abstract

The non-conforming groups who are subjected to moral judgments in contemporary Bali receive inequitable access to health services leading to lower health outcomes and premature death. They face structural and institutional barriers to access the available health services. Drawing on my 10 months of fieldwork in five districts in Bali Province, this paper explores the political and social construction of evidence to produce legitimate reality on HIV epidemic in Bali Province, Indonesia. I draw explanations on how the political construction of knowledge and the strategic use of this knowledge contributes to inequity in access to health services. My point of departure is the stark contrast of lived experiences of the transgender population in two districts. By linking the analysis of their lived experiences and the macro-social processes, I discover that the moral pathology narrative driven by socio-religious values and biomedical construction of 'at risk population' could explain the structural and institutional barriers to access to care. This moral rhetoric will dictate priority areas and allocation of health resources. The exclusion of the marginalised groups is constructed by aligning moralistic rhetoric and the powerful and normative power of statistical realities. This paper argues that the political construction of statistical realities and strategic use of it will determine which areas should be prioritised and to justify which population groups are allowed to be left behind.

"Because so many people feel abandoned or they become somebody who is socially soundless": how healers in a remote Australian town are addressing social death

Author: Aqua Hastings (University of Newcastle) email
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Short abstract

Traditional, complementary and alternative healers are overlooked as a health resource. Stigmatisation of cultural medicine leads to social death of practitioners and those who need healing. In remote Australia, healers use contextually relevant practices to enhance social and cultural wellbeing.

Long abstract

Traditional, Complementary and Alternative Medicine (TCAM) is an under-utilised health resource worldwide, due to lack of structural recognition. One system of medicine - biomedicine - seeks to dominate by marginalising the practitioners and practices of all other systems, condemning them as 'unscientific'. The consequence appears to be social death of culturally-based healers. Dominant perspectives that view non-biomedical healers as 'unscientific' and therefore socially attenuated, also view remote health through a deficit lens. Such perspectives report notoriously poor health outcomes in remote areas, and access difficulties. Nevertheless, in a remote town in Australia, far from urban regulatory norms, TCAM practitioners are playing a vital role in community wellbeing. In this setting, healers use contextually relevant healing practices that are culturally-based, and adapt their methods to local needs. Despite the stigma attached to non-scientific systems, TCAM practitioners are engaging with concepts of health that fall outside of normative biomedical concepts. In contrast to 'the absence of disease', understandings of health and healing in this setting are inseparable from the living landscape, entwined in community networks, and imbued with spirituality. TCAM practitioners represent a form of resistance to the social death prescribed by dominating biomedical worldviews. Engaging with culturally relevant practices, local healers are providing contextualised health care and thereby enhancing social and cultural wellbeing.

Moral economies of healthcare: contested forms of value in Darwin renal services

Author: Stefanie Puszka (Australian National University) email
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Short abstract

New relations of care emerge in the spectre of death, between Yolŋu renal patients and health professionals. This presentation considers the contested forms of value that emerge from polysemic understandings of care in Darwin renal services.

Long abstract

Kidney disease has multiple impacts on the lives of Indigenous Australians. It is not only a significant contributor to the burden of disease, but through centralised health service delivery models, requires many sufferers to undertake permanent relocation to urban centres in order to receive life-sustaining treatment. In the Northern Territory over 80% of people requiring dialysis treatment leave remote communities to take up urban residences, the vast majority of whom are Indigenous. While some contend with the multiple moral economies that emerge in the giving and receiving of care, others ultimately decline or cease treatment, and return to their communities to commence palliation. Yolŋu (Indigenous Australians from north east Arnhem Land) have campaigned for many years to have renal services provided in their communities.

Based on a multi-sited ethnographic study with Yolŋu renal patients, health professionals and policymakers, I trace the emergence of new relations of care and new forms of community in Darwin renal services, in the spectre of death. I contend that disparate meanings and expectations of care, underscored by contested forms of value, shape the ways in which healthcare is rationalised, practiced, embodied and embedded in broader social relations. Conflicting notions of how obligation and power are exercised through care are mobilised by patients and health professionals within bureaucratic settings in coming to terms with difference and affecting value translations. 'Self care' regimes are a key site of contestation through which diverse forms of value are refracted.

This panel is closed to new paper proposals.