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From “ineducability” to “rare disabilities”. Evolution and emergence of political categories involved in shaping the French medico-social sector

Abstract : In France, a notion is currently the focus of a number of political debates, that of “rare disabilities”, a notion that does not seem to be used, or to a limited extent, in other countries. The aim of this article is to return to the history of this notion in France: when and why did it appear? What issue and what population does this category designate? To set the issues related to “rare disabilities” in the context of the French disability policy, the first section of the article traces the development of the medico-social sector at the end of the 1940s, on the basis of the notion of educability, superseding that of incurability on one hand, and the categorization of the populations of disabled persons in terms of impairments on the other hand. The second part shows how in this context, the issue of children with several impairments emerges and how, under the impetus of parents and health professionals, distinctions are formed within the category of multiple disabilities between “multihandicap”, “plurihandicap” and “polyhandicap”. The third section traces the appearance of the term “rare disabilites” in the context of a political decentralization in 1986, the construction of a new political and administrative category and the fluctuations of its definition, which currently falls short of the challenges raised by this complex form of disability. The fourth section shows how this new category became from 1998 on, a performative and pragmatic category leading to the creation of specific and original modes of care that challenge the traditional institutional approach of disability in a context of reform of the French disability policy. The article is based on an exploratory research that has consisted in an analysis of grey literature (legal texts, associations and working groups reports) concerning the notion of “rare disabilities”.
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Submitted on : Friday, January 28, 2022 - 8:38:16 AM
Last modification on : Monday, May 9, 2022 - 12:06:55 PM

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Myriam Winance, C Barral. 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, 2013, 7 (4), pp.244-259. ⟨10.1016/j.alter.2013.08.002⟩. ⟨hal-03478563⟩



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