From silence to evidence based-activism: the epistemic and political empowerment of the Portuguese Stuttering Association

Abstract

Science and Technology Studies have shown the virtues of moving from Public Understanding of Science to Public Engagement with Science. Experiences of collaborative participatory research and community-based participatory research reveal some of the complexities related to both science/society relations and science/democracy relations. These are characterized by the engagement of scientists and civil society organizations in the resolution of problems of common interest and in the development of innovative projects with social impact through the promotion of egalitarian and nonhierarchical epistemic relationships between them. This paper aims to put forward some reflections resulting from the collaboration between the Centre for Social Studies and the Portuguese Stuttering Association. The collaboration seeks to promote strong dialogues between people who stutter, speech-language pathologists, psychologists, experts in neuroscience, linguistics, among others, in order to foster a reflection on stuttering, its causes, possible coping strategies and different legal and clinical frameworks. More precisely, the purpose of this paper is to reflect on the potentiality of this collaborative device to promote the epistemological empowerment of people who stutter, allowing their emergence as "experts of experience" (Rabeharisoa & Callon, 2004) and owners of relevant knowledge about stuttering, giving them the legitimacy to participate in the collaboration, not as objects of research, but as active subjects of knowledge production, capable of developing an “evidence-based activism” (Rabeharisoa et al., 2013).