The interstices of pain and relief: people, technology and governance in a palliative care social movement in india

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Authors
Kunnukattil Shaji, Nishanth
Issue Date
2024-08
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Electronic thesis
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en_US
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Science and technology studies
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Abstract
Kerala, a state in India, has garnered acclaim as one of the more successful palliative care social movements by highlighting its functioning through a mix of community and state action. Kerala’s palliative care movement is unique in that it is a grassroots initiative that provides palliative care, free of cost, to people through a network of volunteers, local self-governing institutions and civil society at large This dissertation investigates the palliative care movement, its formation, and constituent elements, through the lens of social movements as studied within the field of Science and Technology Studies. This is done by focusing on three major aspects of the movement: community, governance, and technology. ‘Community’ here refers to the local yet contested conceptions of the term as it exists within the palliative care movement and across different regions of the state in Kerala. Governance refers to the different national and transnational antecedents that have shaped healthcare in Kerala and in turn has shaped the palliative care social movement. Finally, the painkiller morphine, widely understood as the primary instrument of pain relief shall be studied through its position as the most salient technology of care within the movement. This refers to the different political configurations that its use engenders, constrained as it is by transnational and national laws of regulation. Through a re-articulation of the theory of affordances, I show how each of the aspects of community, governance, and technology brings about unique affordances that allowed the social movement to take shape and sustain itself. I define affordances as actions that enable or constrain, made available through a combination of the socio-material realities of place, ethical positions, institutional histories and people in their multiplicity. Volunteering within palliative care organizations allowed volunteers to reassess and reshape how medicine and care can be imagined and disbursed. I further delineate how the volunteers’ own ideas of care were shaped and transformed by their own histories of organizing, caregiving, religious morals all together to form complex heterogeneous sources of inspiration and knowledge that they fed back into palliative care. This dissertation also highlights how the State of Kerala instituted new collaborative modes of governance that developed from state-led decentralization in the mid-1990s, which produced new affordances that palliative care organizations, both public and private, have capitalized on. Finally, through archival research, I contextualize the history of morphine regulation in India which constrains the delivery of pain relief medication to this very day. Further this dissertation also highlights how allowing volunteers to disburse morphine under a licensed doctor frees up some of these regulations in ways that people who need morphine do get it without the risk of misuse. Here again, affordances of this practice reimagine palliative care in a fundamental way. Ultimately, through a mix of ethnographic and historical research, I show how a Science and Technology Studies analysis of social movements can be carried out by considering different vantage points through the heuristic of the multiple affordances that enable and constrain them.
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August 2024
School of Humanities, Arts, and Social Sciences
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Rensselaer Polytechnic Institute, Troy, NY
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