Appraising self-advocacy in the lives of people with learning difficulties
This thesis presents an appraisal of self-advocacy in the lives of people with learning difficulties ('self-advocates'). The study consists of thesis (volume I) and appendix (volume II). The thesis attempts to answer three questions: 1. What is the nature of the contemporary self-advocacy movement? 2. How do self-advocacy groups impact upon the lives of people with learning difficulties? 3. How do self-advocacy groups work? The first section of the thesis reviews the literature on self-advocacy of people with learning difficulties, introduces an inclusive social model of disability (the guiding theoretical perspective of this appraisal) and critically outlines the methods employed in this study. The next three sections present findings from the empirical work: • Section 2 - The nature of the contemporary self-advocacy movement - reports on the findings from a postal survey of 134 self-advocacy groups, highlighting the complexity within the movement, overlap of group types and variety of group affiliations. • Section 3 - Living self-advocacy - presents the life stories of five self-advocates who have had long-term involvement with self advocacy groups. Broad themes are drawn out from the stories, including life before self-advocacy groups, coming out as a self advocate and expert advice. Attention is also paid to the writing of life stories in collaborative narrative inquiry. • Section 4 - Self-advocacy in action - delves into the dynamics of four self-advocacy groups as gleaned through an ethnographic study. Each group is described and appraised, the self-advocacy literature is revisited in light of the observed workings of groups and the notion of support is considered with reference to models of disability. Finally, the doing of ethnography is explored with reference to subjectivity, method and analysis. The final section of the thesis revisits self-advocacy in light of the empirical findings. It is concluded that even when self-advocates are disabled by excluding barriers and stifled by the 'support' of others and the affiliations of their self-advocacy groups, their resilience shines through.