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

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  • Rabeharisoa, Vololona

Abstract

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.

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  • Rabeharisoa, Vololona, 2006. "From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 564-576, February.
    • Handle: RePEc:eee:socmed:v:62:y:2006:i:3:p:564-576
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    References listed on IDEAS

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    1. Rabeharisoa, Vololona, 2003. "The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation," Social Science & Medicine, Elsevier, vol. 57(11), pages 2127-2136, December.
    2. Crossley, Michele L. & Crossley, Nick, 2001. "Patient' voices, social movements and the habitus; how psychiatric survivors 'speak out," Social Science & Medicine, Elsevier, vol. 52(10), pages 1477-1489, May.
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    2. Claire Edwards & Etaoine Howlett & Madeleine Akrich & Vololona Rabeharisoa, 2012. "Attention deficit hyperactivity disorder in France and Ireland: parents' groups' scientific and political framing of an unsettled condition," CSI Working Papers Series 024, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    3. Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
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