Redefining self-advocacy: a practice theory-based approach

© 2020 The Authors. Journal of Policy and Practice in Intellectual Disabilities published by International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC. The disabled people's movements have successfully influenced public policies and laws. Self-advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores “practice theory” through the analysis of interviews with advocates and self-advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self-advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: “informing and being informed,” “using media,” “supporting each other,” “speaking up,” and “bureaucratic duties.” Contrary to several previous studies on self-advocacy that emphasized “speaking up” as the main activity in advocacy, this study found that most practices of advocates and self-advocates are “para-advocacy” practices that may or may not lead directly to “speaking up.” Practices of self-advocates are often embedded in other everyday activities people do. The line between practices that belong to self-advocacy and practices outside self-advocacy may not always be clear even to self-advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self-advocates.