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VSN-RAP: “The social Life of neurosciences”: The role of patients’ organizations

ANR contract 2009-2012
Coordinator: Brigitte Chamak (Cermes3)

Among the changes that have affected our societies, the transformations in the classifications of diseases, and more particularly of diseases known as “mental,” have had a major impact. By enlarging the diagnostic criteria of depression, hyperactivity, the bipolar syndrome, autism, phobias, etc., the boundaries between what is considered as normal and what is considered as pathological have changed. The relationships between health, disease, and sociality have changed and led to an unprecedented increase in diagnoses of these pathologies, the contours of which have been modified, especially in North America, the United Kingdom, and Australia. The development of organizations and self-support groups connected with these changes participated in redefining the contours of the categories. This project focused on the joint construction and explored several examples (autism, obsessive compulsive disorders) in order to analyze the interactions between scientific productions and their appropriation and/or transformation by the movements.

With brain imaging, molecular biology, genetics, and bioinformatics, neuroscientific researchers have acquired a confidence that has led them to develop a biology of the mind in which a great variety of mental functions are associated with the functioning of neural circuitry. We explored the entry of psychiatry into Big Science via neurosciences by analyzing the technique consisting in implanting electrodes in the brain to stimulate it (intracranial transplantations).

Identifying an individual’s functioning with that of his or her brain has pervaded our society. The concept of neurodiversity, forged in the context of autism in Australia, has spread among organizations of persons recognized as having a mental disability. This direction has taken much greater hold in Anglo-Saxon countries than in France. Associating special education with the concept of neurodiversity is more widespread there. We analyzed the genealogy of this concept and the backs and forths between research in the neurosciences, cognitive models, and social movements, comparing France and North America. The movements referring to neurodiversity being much more numerous in the United States and in Canada, we endeavored to describe and understand these differences.

As France has introduced, via the law of February 11, 2005 on disability, the possibility of helping to establish mutual-assistance groups (groupes d’entraide mutuelle, or GEMs), perceived as a means to reintegrate persons with mental disorders into society, our project also focused on the development of these GEMs. Data was collected on their number, their functioning, their demands, and their practices, and they were compared with the equivalent Anglo-American movements.