Inserm, Cermes3 (Centre for Research on Medicine, Sciences, Health, Mental Health and Society)
coauthored by Louis Bertrand (INSERM, CERMES3)
From «Rare disabilities» to «rare care». Some preliminary analysis of the history of the French category “rare disabilities”
In my presentation, I will come back on the history and the use of the term « rare disabilities » in France. This term is related to the history of the French disability policies, more precisely to the way “care” for disabled persons has been organized in France all along the 20th century. In France, care for disabled persons has mainly been medico-social care provided by specialized institutions which
were category based. Those institutions were specialized according to the impairment of the people they take care of: physical disability / intellectual disability / deaf / blind. The term “rare disability” has been used by some associations of parents during the seventies and eighties to raise the problem of their children that had two or more different types of disabilities (for example, deaf-blind, or deaf with motor and cognitive impairments, etc.) and that were excluded from those specialized institutions because of this multiple disability (they were not entering the defined medico-social categories). They argued that those children needed very specialized care, a kind of care that was itself “rare”. In my presentation, I will analyze the way they have built up this new category as a political and administrative category that linked the definition of the persons with the definition of the care they needed. I will analyze the nature of this category which tries to combine the political need of categorization (of people and care) and the individual need of personalization (of the person and care). My presentation will be based on a current research which is a socio-historical analysis of the emergence of the term “rare disabilities” in France. It includes analysis of archives (administrative archives or archives from associations), interviews with administrative, political and associative actors, and an ethnographic inquiry in two “National centre for rare disabilities”.