This Joint ENS-EHESP chair is funded by the CNSA.
It is part of the Centre for Disability Studies (MSSH) located at 236 bis rue de Tolbiac, 75013 Paris.
Team
Florence Weber, Chair, Professor at the Ecole Normale Supérieure, an anthropologist and sociologist, researcher at the Centre Maurice Halbwachs (CMH).
Nicolas Belorgey (CR CNRS, PRISME), Solène Billaud (CMH post-doc), Pauline Blum (CMH PhD), Baptiste Brossard (CMH post-doc), Elodie Hennequin (CMH PhD), Emmanuel Jeannet (Administrative Secretary), Samuel Neuberg (CMH PhD), Jingyue Xing (CMH PhD).
Steering Committee
Aude Béliard (Paris Descartes), Jean-Sébastien Eideliman (Lille 3), Séverine Gojard (INRA), Agnès Gramain (Paris 1), Delphine Serre (Paris 1).
Development team
Jean-Robert Dantou (Photographer), Joan Bardelet (Collateral Creations).
Aims
The chair is designed to answer the following scientific question: When and how is the point of view of a person with a mental disability taken into account in decisions concerning him or her?
This depend on several factors:
- The pathology;
- Family configuration (with its economic aspects);
- Support network configuration (family and professional support), including in institutions;
- The type of the support (financial support, assistance, ordinary or specialized environment, decision-making support, guardianship);
- Relationships with health, medical-social and social professionals.
Method
The team conducts a detailed study of the family and professional support network, once the pathology, type of care and place of residence have been determined. They then check the validity of their ethnographic results using statistics on public surveys (Handicap Santé) or administrative data. The Handicap Santé post-survey helps develop hypotheses about pathologies and different configurations.
Themes
The team is interested in both the domestic life decisions (residence, budget, daily life, leisure), and decisions about education, vocational training and employment. On the first theme, they can use the results of the MEDIPS team that have examined populations of elderly people with Alzheimer’s type disorders, schizophrenic adults and children with mental disabilities.
Public decision making tools
The team aims to use the results of their research to fuel public debate and clarify the impact of legislative, judicial and medical decisions, in cases where the balance between assistance to persons in danger and respect for individual rights is at stake.
Training of professionals
The last year of the Chair (2014-2015) will focus on developing a training program for mental disability professionals that reflects the advances in social science research.
Development of completed and ongoing research
Because the Chair aims to inform public debate, it has embarked on an original program of publishing the questions, results and scientific research methods as depicted by artists and designers. A “Disability and Dependence in Social Sciences” website is scheduled to go online in March 2012.
Projects
- The conditions for speaking out on the part of the cared-for and the caregivers in the Handicap Santé survey: post-survey under the supervision of Aude Béliard
- Social guardianship, financial guardianship: a collective survey under the supervision of Samuel Neuberg
- Neuropsychological tests and medical imaging: analysis of two diagnostic methods of Alzheimer’s disease (Baptiste Brossard, post-doc MHC)
- Mental disability and passage to adulthood: support systems and planning a future (Pauline Blum, CMH PhD candidate)
- Decision-making for others: professional practices and institutional processes in the case of recognized mental disability (Elodie Hennequin, CMH PhD candidate)
- The pricing of support activities: economic issues, political issues, (Jingyue Xing, CMH PhD candidate)
- Ethnography of professional networks and mobilities in the in-home care field and in institutions (Solène Billaud, CMH post-doc)
Partners
- Ecole normale supérieure
- Centre Maurice Halbwachs (CNRS, EHESS, ENS)
- PRISME (CNRS, Université de Strasbourg)
