From disability to handicap: an inevitable response to social constraints?

Authors


  • *This research was funded by the National Health Research and Development Program of the Department of Health and Welfare, Canada. I wish to thank Hubert Guindon for suggesting this research; Michael Bury for reading earlier drafts of this paper and discussing them with me; Roberta Hamilton for her timely assistance; the two anonymous reviewers and the Sociology Editor of the CRSA for their comments and criticisms. This article was received in August, 1987 and accepted in June, 1988.

Abstract

La recherche sociologique et socio-psychologique sur la sclérose en plaques (SP) suggère que l'ajustement subséquent au diagnostic chez le patient se présente comme un choix entre deux stratégies: ‘normalisation’ ou ‘retrait’. Mais en postulant un tel choix de stratégies, on ignore les facteurs sociaux qui influencent la façon dont les individus frappés d'une telle maladie chronique réagissent. En fait, la recherche indique que les individus atteints de SP choisissent des stratégies d'ajustement, mais ceci dans un contexte social et culturel qui limite sévèrement l'éventail de choix disponibles et qui affecte la probabilité de faire un choix plutôt qu'un autre. Les données présentées ici ont trait à quelques-uns de ces facteurs sociaux: la réponse de l'époux à la transformation de la relation conjugate, et l'attitude des médecins et des employeurs face à la situation d'emploi de la personne chez qui SP a été diagnostiquée.

Previous sociological and social-psychological research on the chronic illness multiple sclerosis (MS) and post-diagnosis adjustment to the illness has posited a dichotomous patient response: ‘normalization’ or ‘withdrawal’. In this paper it is argued that the posited choice of strategies ignores the social factors that influence how individuals diagnosed with a chronic illness such as MS respond. In fact, the research findings indicate that people with MS choose adjustment strategies, but they do so in a social and cultural context that powerfully constrains both the range of choices available to them and the probability of making one choice rather than another. Data presented here pertain to the response of spouses to the marital relationship, and of doctors and employers to labor force participation of individuals diagnosed with MS.

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