50 Years of speaking up in England—Towards an important history

Abstract

The history of self‐advocacy in England has not been recorded, other than the stories of individuals and of some individual groups. We, therefore, decided to interview some leaders of the self‐advocacy movement and some people who were allies and supporters. Three researchers, two self‐advocates and one academic, interviewed 11 self‐advocate leaders on Zoom as the COVID lockdowns made it impossible to meet. Four allies and supporters wrote their answers to our questions, and we interviewed three others. We used the information people gave us to start writing the story of self‐advocacy from 1972 to 2002. There is a lot more to do.

Self-Advocacy in Inclusive Research

“…We wanted to write about this topic as we believe it is important for people with intellectual disabilities to be strong self-advocates and that being a self-advocate is important for being an inclusive researcher. While others have touched on the link between self-advocacy and inclusive research (Atkinson 2002;Henderson and Bigby 2016;Hopkins et al 2022;Walmsley and Johnson 2003;Walmsley 2014;Walmsley et al 2018Walmsley et al , 2022, these publications tend to do so only briefly and they do not provide much space for the perspective of a researcher with an intellectual disability. To contextualize the experiences of Courtney, we provide a discussion of the history of both self-advocacy and inclusive research.…”

“…The conferences organized by self-advocacy groups in the early stages of the movement were crucial for the development of international connections and the emergence of self-advocacy groups around the world. For example, after attending the International Self-Advocacy Conference of 1984 in the U.S., UK self-advocates started 'People First London' (Walmsley et al 2022).…”

“…Self-advocacy groups have had to grapple with a tension between building confidence among members and recruiting new members, and their collective action and representation. Additionally, issues of importance to self-advocacy groups have included the role of supporters without intellectual disabilities such as family members and staff, the inclusion of people with high support needs, their level of independence from organizations that provide services to people with intellectual disabilities, and having sufficient funding available (Walmsley et al 2022).…”

“…Finally, more research on self-advocacy should be conducted by people with intellectual disabilities to capture their experiences and perspectives. Walmsley et al (2022) argue that the general lack of research on self-advocacy might be caused by concerns about whether non-disabled people are allowed to write this history. However, researchers without intellectual disabilities can serve as important allies in supporting self-advocates in recording and accessing their own histories.…”

“…Though some literature has explored the life histories of self-advocates (e.g., Caldwell 2010; Goodley 2000;Traustadottir 2006) and the history of individual self-advocacy groups (e.g., Walmsley 2014;Frawley and Bigby 2015), a gap remains in the knowledge on the history of self-advocacy moments (Walmsley 2014;Walmsley et al 2022). Most research on the history of self-advocacy focuses on developments in specific countries (Bylov 2006;Callus et al 2022;Ferguson 2019;Henderson and Bigby 2016;Hutton et al 2017;Walmsley 2014;Waltz et al 2015), which does not necessarily provide insight into international self-advocacy movements.…”