Les collectifs d’usagers dans les champs du sida et de la toxicomanie

Broqua, Christophe; Jauffret‐Roustide, Marie

doi:10.1051/medsci/2004204475

Cited by 5 publications

(3 citation statements)

References 9 publications

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“…However, the newly‐born associations of autistic individuals are starting to change the landscape by introducing new actors who sometimes reproach parents’ associations for speaking on their behalf. These new associations, such as self‐help groups (Barbot 2002, Broqua and Jauffret‐Roustide 2004, Jauffret 2000, Katz and Bender 1976, Pinell et al 2000, Rabeharisoa and Callon 2000, Room 1998) or disability movements (Albrecht et al 2001) have three claims: first, an epistemological claim, so that their experiences of autism can be considered as knowledge; secondly, a political claim, so that their problems are granted particular attention by public officials and professionals; and thirdly, an identity claim, to be recognised as true partners (Rabeharisoa 2006).…”

Section: Introductionmentioning

confidence: 99%

Autism and social movements: French parents’ associations and international autistic individuals’ organisations

Chamak

2008

Sociology Health & Illness

170

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The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. It is suggested that both the autism-category changes in the late 1980s, and the development of educational and behavioural methods in the United States, have given rise to a large-scale mobilisation around the changes in the definition of autism and interventions in many countries. The present paper highlights the historical dynamics of the mobilisation of French parents' associations and the engagement of autistic persons' organisations. The role of the French parents' associations has been studied over the last 40 years to show how they have contributed to shaping public policy in France and how they have favoured the American model of autism despite the French professionals' resistance. At the international level, the newly-born associations of autistic individuals have introduced new actors who sometimes reproach the parents' associations for speaking on their behalf. These new associations, such as self-help groups, have a political identity problem. Their members no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. Their actions can be analysed in the broader context of the disability movement. If the disability movement is considered as the latest generation of social movements, the action of autistic persons can be viewed as the latest generation of the disability movements.

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Section: Introductionmentioning

confidence: 99%

Autism and social movements: French parents’ associations and international autistic individuals’ organisations

Chamak

2008

Sociology Health & Illness

170

View full text Add to dashboard Cite

show abstract

“…Elle est au coeur des revendications des groupes et associations de malades ou handicapés, pour obtenir des droits ou des services, participer aux décisions, changer la représentation de la pathologie, sortir les malades du silence et de l'indifférence des autres. Elle trouve à s'exprimer dans divers lieux où la parole de l'usager est sollicitée : comités d'usagers, comités d'éthique, consultations publiques sur les services de santé… [15,18,20]. Elle trouve écho auprès des administrations, qui l'enregistrent et la comptabilisent au profit de la gestion des établissements et des services, comme un indicateur des besoins ou de la qualité des services [19].…”

Section: La Considérationunclassified

“…L'importance qu'elles prennent, et qui se manifeste à travers la demande toujours croissante de soins, de médicaments et d'espaces d'écoute, est liée à des transformations de la culture. Un profond mouvement d'égalisation des conditions et des statuts dans les sociétés démocratiques est à l'oeuvre, qui appelle cette parole que sollicitent les associations et les médias, qu'enregistrent les administrations et qu'interprè-tent les soignants [15,20]. Une profonde transformation de la subjectivité est simultanément à l'oeuvre, une individualisation de l'expérience, et la médecine scientifique, loin de toujours y faire obstacle, contribue à la renforcer, en centrant l'attention REPÈRES HISTOIRE ET SCIENCES SOCIALES sur le corps justement, devenu expression première de la singularité et de la subjectivité.…”

Section: Expérience Et Cultureunclassified