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VIDEO DOI: https://doi.org/10.48448/vft2-9d70

technical paper

AAA Annual Meeting 2021

November 18, 2021

Baltimore, United States

Staying True Retelling Truths: On Framing Contested Experiences of People with Severe Mental Illness


medical anthropology


research/research methods

Studying physically and socially marginalized groups of people forms an integral part of medical anthropology, and it has often been intertwined with questions of power (Foucault 1963). For good reason, ethnographic research can be seen as a form of politics of recognition (Taylor 1994). When seeking to study vulnerable groups, such as seriously or terminally ill people, the anthropologist faces a complex setting of ethical rules and regulations, many of which are aimed at protecting research participants. As Julia Lawton (2001) has pointed out, the lack of ethnographic research among terminally ill patients is most likely related to ethical issues; some scholars even suggest that due to their vulnerability, palliative patients might need to be excluded altogether from academic research (e.g., Kritjanson, Hanson & Belneaves 1994). To make an assumption that a person is too vulnerable to be part of research is problematic, however; it not only deprives seriously ill people of agency but also implies a practice of control of “what is said, how it is said, or if anything is said at all about the topic” (Corbin & Morse 2003). Various involved collaborators, such as funders, institutional bodies, medical staff, or colleagues from different academic fields, may understand their roles and the nature of the collaboration quite differently. Non-anthropological parties may voice suggestions, propositions, and even straight-out demands in regards to the research material, applied methods and theories, and/or written reports of the study. Regardless of one’s place on the academic path, such contestations and negotiations put the anthropologist in a difficult place. Yet, the principles of professional responsibility state that “anthropologists must not agree to conditions which inappropriately change the purpose, focus, or intended outcomes of their research” (AAA Ethics Forums 2012). How can one conduct ethically sustainable research if controversy is involved? To whom are we ultimately accountable? This session invites discussion on experiences of the various kinds of difficulties faced in regards to truth and responsibility as encountered in research on seriously ill or dying people. As scholars, we can help each other find better ways to navigate the challenges of doing ethnography in the sphere of medical anthropology. By sharing our methodologies and ways of working with contested realities in the field, we can contribute to this complex and shifting area of the field.


Transcript English (automatic)

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