The main theme of my research is the issue of disability. Using the tools of sociology, my objective is to analyse the way this notion is defined in our society, through policies and institutional facilities on the one hand, and through the practices and experiences of people on the other. These register at the crossroads of a socio-history of disability policy, the sociology of health and the sociology of sciences and techniques. They examine notions of care, of the person (concepts of the “person”), of the body, of disability.
In my earlier work, I was interested in the question of “prostheses” (logical basis for use and interactions with the wheelchair) and the evolution of disability policies (models of disability in international policy – debate concerning WHO’s international classifications, Universal Design. And in national policy, debate on the law of 2005: tensions between three disability policies – categorical, universal, and personalised). I also participate in a collaborative project, coordinated by J. Barbot (Inserm), on the question of compensation for medical accidents, in the context of the scheme of amicable agreement created by the law of March 4, 2002. My recent research has been on the history and competencies of persons living with several impairments, in two studies: 1/ the emergence of political categories in the medico-social sector; 2/ the ordinary production of families.
1/ The emergence of policy categories in the medico-social sector: Following my participation in Inserm’s collective expertise “Rare disabilities” (2013), I became interested in the history of care of persons living with several impairments, and the concomitant emergence of policy categories and of care schemes. I focused my attention on two categories, that of “rare disabilities” and that of “multiple disabilities”. I showed that, for these persons, they were linked to different conceptions of care and its organisation, defended by two different associations. Retracing this history enables an understanding of the structuring of the French medico-social sector (by exploring the dual tensions invading this sector: on the one hand between the medical and the social, on the other between categorisation and personalisation of care). It casts a new light on the history of the education of disabled children, by looking at its opposite: the uneducability of some children. This research thus makes visible the work of qualification produced by the actors to problematize this uneducability and redefines educability, not as an essential characteristic of the children, but as a relative quality, related to the relationship and to educational techniques. This research was part of a collaborative project, involving Louis Bertrand, and was funded by the Iresp and the CNSA (Research Contract: "’Rare disabilities’ in transformations of the medico-social sector. Socio-History of a political category, 1960-2012", coordinated by M. Winance, CNSA financing - Iresp, 2014-2017).
2/ The making of the ordinary by families, one of whose members has multiple disabilities. After having carried out the institutional history of multiple disabilities, I want to do a history of familial experiences, as told in a biographical narrative by the person concerned. This will also broaden my outlook and enable analysing – beyond the question of modes of care – the “the almost ordinary life of these families”. This project will also be collaborative, involving researchers (B. Bonniau, L. Velpry, P. Vidal-Naquet) but also a researcher-actor (C. Desjeux, Observatoire d’Handéo) and mediator-researchers (l’Atelier des Jours à Venir). In this project, we will examine what we call “the making of the ordinary” by families having a member living with multiple disabilities. This notion refers to two dimensions of the lives of the families. The first is the way that these families, like any family, construct a family order, give it a sense and a rhythm, and by doing this, belong to a common world. The second dimension is the work that these families carry out, “in addition”, to make ordinary something that could distinguish their life from an “ordinary” life. We seek to analyse the two dimensions of work in the making of the ordinary by these families, but also to highlight their evolution over time, by contrasting generations of families. Finally, we are committed to a methodology for defining and setting up modalities of participative research, involving the families and the professionals.
In relation to these research activities, I am developing methodological thinking concerning qualitative research in the field of health, and the issues presently emerging in this research. Notably, I am interested in the question of interdisciplinarity and that of participative research. It is important for me to explore the different forms of research by examining the political and scientific pertinence of each one. Finally, I combine these research activities with teaching activities (qualitative methods, sociology of health, sociology of disability) and activities directing research (Associate editor of the journal ‘Alter’, Directing a research network “Organisations and practices of the “medico-social”. A research network cutting across categories, actors, disciplines, Europe”).
