How to build a social movement for care in the 21st century?
This is the kind of title a social scientist comes up with, and to no surprise social science is what we do. We-- Gabriela A. Sanchez and Dana Mahr from the University of Geneva (https://twitter.com/citizensciences)–want to propose a session where we contextualize socially and historically how civil society has intervened and impacted biomedical knowledge and health care in Western societies. Cases such as the Women’s Health Movement in the 1970s, the Deaf Culture Movement, the Anti-vaccination Movement, and the Pro-anorexia Movement. These explorations helps us understand how social movements can challenge and alter the ways we provide definitions (scientifically and culturally) for things like expertise, health, disease, bodies, and care. The purpose of this reflection is to situate Health Social Movements (HSM) in 2017 and to sketch some of the potentials and pitfalls they face with current social and technological trends like: Big data driven medicine and care, the automatization of health care work, scientific citizenship, the re-emerging discourse of empowerment and participation, the right (or duty) to make individual lifestyle/medical choices, the growing medicalization of many aspects of modern life and its oppositional (but somehow complementary) trend of dissenting established medical practices (like vaccines and pharmaceuticals).
Against the background of these contemporary developments we want to discuss how OpenCare and the themes we discussed during the #openvillage gathering could be positioned in the continuous effort of HSM to alter both, the public discourse about care and its policies. We want to open up the debate with questions like: Why do we believe open science and citizen science are helpful in health care? Is participation, openness and choice inherently good? How do we envision shifting dynamics of power between physicians, care-givers, and (informed) patients? Who do they empower?
Format of Session
We propose to do a 15 min presentation introducing the session, present basic social concepts and analyze selected examples of HSMs to open a 45 min discussion about possible (un)foreseen failures of contemporary HSMs in creating an inclusive, participatory, individualized, and caring health care movement/infrastructure and develop strategies to properly address them. We believe participants in this session will gain valuable insights into how social movements work by changing the discourse, practice or policies in health care and effect real change. We hope this discussion will also raise new questions and concerns, as well as deep reflexivity of the roles and responsibilities we hold as activists, developers, patients, family caregivers, health-care professionals, policy-makers, etc.
health social movements (de)medicalization normalization of bodies and minds pseudo-medicine the ethico-politics of care othering intersectionality partaking vs dissent vs alternatives illness as a culture health as a lifestyle