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"Rare disabilities" in a changing medical-social sector –Social-historical analysis of the construction and practical uses of this category between 1960 and 2013 (HARASOHI)

IRESP contract (2014-2017) | Cermes3
Coordinator: Myriam Winance, Cermes3

The goal of this project is to draw up a social-historical analysis of the construction and practical uses of the “rare disabilities” category.It aims to understand the transformations of an initial problem, that of persons affected by two or more disabilities for which no suitable care was available, into a political-administrative category, then into a concept.It also aims to describe the ways in which the actors involved constantly navigate to and from conceptual work intended to qualify the problems encountered in the field and the categorization of so-called rare disabilities, allowing reflection on the forms of care and the organization of care-taking procedures.

To do this, we explore three research lines:1) the transformations of the “problem of multidisabled persons for whom there is no suitable care available” and the construction, starting from this problem, of various categories including “rare disabilities” and “polydisability”; 2)therole of community-based organizations in defining “rare disability”; 3) the originality of national “rare disability” resource centers in the medical-social sector and their evolutions.

Cermes3 participants: Nicolas Henckes, Louis Bertrand

  • Winance M. and Barral C. (2013), "De "l'inéducable" aux "handicaps rares".Évolution et émergence des catégories politiques en lien avec la structuration du secteur médico-social français", ALTER - European Journal of Disability Research / Revue Européenne de Recherche sur le Handicap, 7(4), pp. e1-e16.
  • Winance M. and Barral C. (2013), "From ‘ineducability’ to 'rare disabilities'. Evolution and emergence of political categories involved in shaping the French medico-social sector", ALTER - European Journal of Disability Research / Revue Européenne de Recherche sur le Handicap, 7(4), pp. 244-259.
  • Inserm, Handicaps rares. Contextes, enjeux et perspectives. Collection expertise collective, Inserm, Paris, 2013. (Author of Chapter 1 "Contexte historique et politique" (pp.55-81).