Management, leadership and user control in self-advocacy: an English case study

Tilley, Elizabeth (2013). Management, leadership and user control in self-advocacy: an English case study. Intellectual and Developmental Disabilities, 51(6) pp. 470–481.

DOI: https://doi.org/10.1352/1934-9556-51.6.470

Abstract

This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disabilities, I seek to explore how one particular organization managed to survive and grow. In particular, the paper explores themes of management, leadership, and user control, linking these to external perceptions about self-advocacy organizations. The organization in my study developed an ‘interdependent’ governance model based on key organizational roles for non-disabled advisors and self-advocates which proved popular with external funders. Despite the organization’s notable achievements, their success raises questions for the wider self-advocacy movement, notably how leadership capacity can be developed amongst self-advocates.

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