From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France

How, and to what extent, do patient organisations renew traditional forms of social participation and protest? This question is examined, drawing on a socio-historical case study of the Association Française contre les Myopathies—French Muscular Dystrophy Organisation (AFM). The originality of the AFM is that it has not been content to endorse the classic role of representation of people with muscular dystrophy (MD) and their families. It has also articulated and structured different social spaces that allow people suffering from genetic diseases and severe disabilities to be considered as fully-fledged human beings, persons, and citizens within those spaces. Based on quantitative data and methods, this paper aims to characterize this reconfiguration of social spaces that the AFM has undertaken. My contention is that it has given shape to a different form of collective mobilization, one in which the patient organisation is a mediator between different social actors, as much as a patients’ representative. It helps a new issue, here MD, to emerge so that the largest possible collective designate it as a general public concern. As we shall discuss, this renews the question of patients’ collective identity and citizenship.