Experience of stigma and the self-concept of people with a mild mental handicap

Abstract

Recently professionals and service planners have become increasingly aware of the consequences of stigma and of limited social experience for the self-concepts of people with a mental handicap. These issues have been central to the debate concerning the mainstreaming of children with special needs in ordinary schools and have become of major importance for those promoting the social integration of people with a mental handicap. However, there is little understanding of the relationship between the person's experience of stigma and his or her self-concept. Researchers have studied the self-concepts of people with a mental handicap using normative or standardised tests which produce quantitative scores. I argue that such studies provide little insight into 'handicapped' treatment and the participants' views of themselves. In contrast to these studies, the present research has followed the work of Edgerton (1967), who used intensive methods to study the relationship between the self-concepts of adult people with a mental handicap and their social circumstances. Three groups of adult people with a mild mental handicap took part in this research. The first group lived in their family home, the second group moved from their family home to liye more independently, and the third group came from a long-stay hospital. The instruments used in the research were open-ended interviews. In total 48 participants with a mild mental handicap were interviewed, and where possible, their mothers and staff were also involved. The interviews concerned the participants' experience of stigma and their views of themselves in relation to handicap and stigma. A longitudinal investigation with a sub-sample of the participants was also carried out to explore their pattern of social lives and networks. It was found that participants led socially rather segregated lives, had considerable experience of stigma and were often regarded by significant others in their lives as 'handicapped' as persons. Despite this, most of the participants in each of the three groups rejected a 'handicapped' identity. These findings are discussed with reference to several social theories of the self and previous research. The practical implications of the results for future policy and services for people with a mental handicap are also considered.