Disability as Moral Experience: Epilepsy and Self in Routine Relationships

Abstract

This paper draws on depth interview data from an availability sample of 80 people with epilepsy to examine the moral experience of disability (cf. E. Goffman, 1959, “The Moral Career of the Mental Patient,” Psychiatry, 22, 123–135). This concept directs attention to how those who live in the social world of epilepsy, and of disability more generally, define themselves and others in both positive and negative ways. Most discussions of the moral aspects of disability turn on the concept of stigma, and epilepsy certainly is a prime area for such study. This paper, however, focuses on the consequences of disability for the distribution of work and responsibility in routine, everyday relationships and how, in turn, this affects the way people see, think about, and feel about themselves. Particular attention is given to family, parental, and employment relationships. The paper raises the question, If disability is a social construction and has such costs, how can we best construct it for all concerned?

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