Self-advocacy and families: co-researching with people with learning difficulties

Mitchell, Paula Jane (1998). Self-advocacy and families: co-researching with people with learning difficulties. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.0000de1a

Abstract

This thesis examines how adults with learning difficulties experience self-advocacy in their families. I take a qualitative approach, using in-depth interviewing. My work explores participatory research with people with learning difficulties, involving a small group of people with learning difficulties as co-researchers. I use a dialectical materialist understanding of disability, based on the social model. The thesis adds to the recent theorising of learning difficulty. People with learning difficulties are discussed as an oppressed group. The social identity of adults with learning difficulties is that they need care and control, and are like children. Self-advocacy is shown to claim autonomy and adulthood. This thesis argues that self-advocacy challenges the social identity of learning difficulty, but that the oppression of people with learning difficulties is such that their attempts to self-organise are limited.

The thesis examines the challenge to family roles implicit in this. While the principles of self-advocacy apply to home life, in my research practice did not consciously transfer self-advocacy to home. Service influence and the role of advisers were significant. Nevertheless, for my respondents, self-advocacy did impact at home. Day-to-day control at home seemed to be allowed, with real control still resting with parents. The thesis uses models from family literature to illuminate control and autonomy at home. The traditional concept of the 'handicapped family is undermined by my research. Stereotypes of controlling parents holding back their adult children were not found, but the values of independence and separateness are not desirable to all families or adults with learning difficulties. My work links adult status to the identity of learning difficulty itself, exploring how people define themselves.

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