From Representation to Mediation : The Shaping of Collective Mobilization on Muscular Dystrophy in France  

Oleh:

Rabeharisoa, Vololona

Jenis: Article from Journal - ilmiah internasional
Dalam koleksi: Social Science & Medicine (www.elsevier.com/locate/sosscimed) vol. 62 no. 3 (Feb. 2006), page 564-576.
Topik: organizations; pstient organisations; social spaces; collective identity; muscular dystrophy; france; reseau lu

Ketersediaan

Perpustakaan Pusat (Semanggi) Nomor Panggil: SS53.1 Non-tandon: 1 (dapat dipinjam: 0) Tandon: tidak ada

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Isi artikel

How and to what extent, do patient organisations renew traditional for of social participation and protest ? This question is examined, drawing on a socio historicalcase study of the association francaise 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 is 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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