Social death by neglect in health and health systems

Kristin McBain-Rigg (James Cook University)
Stephanie Topp (James Cook University)
Maxine Whittaker (James Cook University)
Session slots:

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?