Accueil MSH-Alpes


Disability in turburlent times: between familiarization and collectivization of care"

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TitleDisability in turburlent times: between familiarization and collectivization of care"
Publication TypeConference Proceedings
AuteursBorelle, Céline
Autre titreESA
Lieu d'éditionGenève
Date détaillée2011/09

Bibliographie thématique / réponses institutionnelles


This paper is based on an ongoing PHD research on the trajectories of autistic children, in terms of care arrangements and problem qualification. This research consists in an ethnography of the autistic field on a local scale in France. This research aims at articulating the diffent logics of actions in various arenas (medical, administrative, associative, school and family) that determine the child’s trajectory. This paper focuses on an issue that emerged during the research concerning the schooling of disabled children in ordinary schools. In july 2010, the local autorities realized that all the funds for 2010 dedicated to employing people helping disabled children in classes had been used up and they decided to stop renewing expired contracts. For a lot of children, it meant being sent back home insofar as teachers would not accept them in classes without a person helping them. This paper shows how a given political context characterized by a lack of financial ressources has impacted on the different decision-making arenas by questioning or revealing their logics of action and judgement. A pragmatist approach of that crisis situation permits to understand that it becomes the parents’ responsability, individually or collectively, to make sure their childen access their right (since 2005) to be schooled in ordinary institutions. This process of parents’ being made responsible for their child’s future results in paradoxical trends according the level of analysis. From a case analysis, we may argue that making parents responsible as inviduals is notably conveyed in the medical arena and raises a major issue: the sharpening of social inequalities between disabled children. Parents don’t have the same capacity to claim their rights, the same ressources to intiate actions that require entering the register of public justification to get their child back to school or to compensate for the lack of public aid by privatizing the production of care. From the individuals’ point of view, that crisis reveals the tendency to privatize a public problem, and the changing equilibrium between State and family in social arrangements of care. But, if we consider parents as collectively organized in associations, this crisis has given place to a re-politicization of the schooling problem. It has been an opportunity for the associations of parents to denounce the persistent problem of lack of funds, by using media coverage and lobbying. This process found an echo in the administrative arena, as far as the experts analyzing the cases and allocating ressources started questioning the logic of their judgement: should they take the global context of financial crisis into account? Eventually, they redefined the logic of their action in political terms: to make local autorities conscious of existing needs and to prevent the production of a vicious circle, which would consist in underevaluating needs and hiding the lack of ressources devoted to disability.