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.