Redefining Self‐Advocacy: A Practice Theory‐Based Approach

Abstract

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.

Perspectives on Humanizing and Liberatory Qualitative Research with Racially/Ethnically Minoritized Youth

“…Heeding Tuck’s [ 1 ] call to action from over a decade ago, we call on the research community, yet again, and specifically qualitative researchers, to permanently discontinue damage-centered research and to take action to remediate oppressive research ideologies and practices that dehumanize racially/ethnically minoritized youth and relegate them to the margins. Our work coalesces with and extends that of other scholars, e.g., [ 5 , 6 , 7 ], committed to humanizing and liberatory research [ 8 , 9 ].…”

Art Therapy for Psychosocial Problems in Children and Adolescents: A Systematic Narrative Review on Art Therapeutic Means and Forms of Expression, Therapist Behavior, and Supposed Mechanisms of Change

“…In clinical practice, art therapists base their therapy on rich experiential and intuitive knowledge. This knowledge is often implicit and difficult to verbalize, also known as tacit knowledge (Petri et al, 2020 ). Often, it is based on beliefs or common sense approaches, without a sound basis in empirical results (Haeyen et al, 2017 ).…”

‘<i>Even a Self-Advocate Needs to Buy Milk</i>’ – Economic Barriers to Self-Advocacy in the Autism and Intellectual Disability Movement

“…In fact, it seems a standard procedure in many disability organisations that self-advocates are expected to work for free. Internal hierarchies within the disability movement (i.e., Goodley 2012;Petri et al 2017;Petri et al 2020) are strongly influenced and maintained by the availability of funding (Meyers 2019) and resources allocation to selfadvocates. Findings suggest that many disability organisations that claim to be fighting for human rights, equality and emancipation are also maintaining or contributing to economic inequalities.…”

“…Yet, despite these achievements, most disability organisations and charities who speak for people with an intellectual disability and autistic people, are still controlled by parents or professionals. There are strong internal hierarchies within the intellectual disability and autism advocacy movement where autistic people and people with an intellectual disability are often 'locked out' of leadership roles and many other practices crucial to disability advocacy (Petri et al 2020). Indeed, the slogan 'nothing about us without us' seems to be rather symbolic in most disability organisations because it is still parents and professional advocates who control organisations and speak for people with intellectual disabilities and autistic people while the involvement of self-advocates usually remains tokenistic (Petri et al 2017).…”