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The intimacy of collaboration and resistance: patient organizations, gynecological cancer and changing lives

Conference contribution
Authors Lisa Lindén
Published in ”Intimate entanglements in science and technology”, European association for the study of science and technology (EASST), Lancaster, 25-28th July
Publication year 2018
Published at Department of Sociology and Work Science
Language en
Keywords science and technology studies, patient organizations, patient activism, knowledge politics, gynecological cancer, gender, affect, intimacy
Subject categories Technology and social change, Gender Studies, Sociology (excluding Social Work, Social Psychology and Social Anthropology)


The experiential and local knowledge enacted by patient organizations (POs) is often contrasted with the scientific, universalistic and "abstract" knowledge enacted by biomedicine. However, in the light of how POs today establish intimate collaborations with scientists, policymakers and health care professionals, such distinction is difficult to hold (Rabeharisoa et al. 2014). In this presentation, I discuss the practices gynecological cancer (GC) POs participate in, and enact, in terms of intimate entanglements of collaboration, resistance, and affectivity. I present an ongoing ethnographic study on GC POs in Sweden and in the UK. The project's aim is to gain knowledge about how GC POs enact and negotiate ideas and practices concerning what it means to be a GC patient and how they enact their cause (what they are fighting for). GC is easily seen as a shameful low-status cancer and is often associated with stigmatizing ideas about sexual lifestyle. This stands in contrast to a prevailing cancer survivorship imaginary of the optimistic and heroic cancer survivor. POs work to change the lives of GC patients through better support and care, and by influencing health care, research and policy. I make use of feminist STS sensibilities towards affect and care (e.g. Martin et al. 2015) to explore the productivity of conceptualizing POs' work as not merely a politics of knowledge, but also a multilayered and relational politics of intimacy. Such approach attunes simultaneously to the affectivity of GC (e.g. its politics of shame), and the affectivity of POs's work and practices.

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