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Conceptualizing autonomy in the context of chronic physical illness: relating philosophical theories to social scientific perspectives

Maastricht Care and Public Health Research Institute, Netherlands School of Primary, the Netherlands, gmxs{at}cbs.nl

Gertrudis I.J.M. Kempen

Maastricht Care and Public Health Research Institute, Netherlands School of Primary, the Netherlands

Guy A.M. Widdershoven

Maastricht Care and Public Health Research Institute, Netherlands School of Primary, the Netherlands

Peter P.M. Janssen

Maastricht Care and Public Health Research Institute, Netherlands School of Primary, the Netherlands

Jacques T.M. van Eijk

Maastricht Care and Public Health Research Institute, Netherlands School of Primary, the Netherlands

The aim of this article is to conceptualize autonomy in the context of chronic physical illness. To this end, we compare and contrast a selection of contemporary philosophical theories of autonomy with social scientific perspectives on chronic illness, particularly models of disability and symbolic interactionism. The philosophical theories mainly depart from a positive conceptualization of autonomy, which involves actively shaping one's life and identifying with fundamental values. This conceptualization is preferred over a negative conceptualization, which defines autonomy as non-interference, for its compatibility with social models of disability and with the assumption that people are interdependent. Interference may disable, but also enable people with a chronic illness to shape their lives. What matters is that people can realize what they want to realize. We suggest that, in the context of chronic physical illness, autonomy might be conceptualized as correspondence between what people want their lives to be like and what their lives are actually like. Disturbed autonomy might be restored either by expanding opportunities to arrange life or by adjusting how one wants life to be arranged. The grounds for the latter approach might be questioned, first, if people have not adjusted what they want carefully, and second, if reorganization of the material and social environment would have made it unnecessary to adjust one's arrangement of life.

Key Words: autonomy • chronic illness • conceptualization

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