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© 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.

Autistic people and people with an intellectual disability have been actively involved in disability advocacy; however, it is still often parents and professionals who lead organisations speaking on their behalf. Previous studies have found that autistic self-advocates and self-advocates with an intellectual disability have been systematically marginalised in the disability movement. This article appraises how economic factors influence self-advocates’ position within the disability movement, based on qualitative analysis of data collected in two countries, the UK and Hungary. The study found that lack of resources, poverty and unpaid positions at organisations strongly hinder self-advocates’ participation in advocacy/disability rights organisations speaking for them. Findings also suggest that practices of disability organisations may contribute to maintaining these barriers.

Background: Since the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), human rights have become central for disability advocacy. The CRPD requires that disabled people and their representative organisations (DPOs) have a prominent role in the implementation and monitoring of the Convention. However, the representation of people with intellectual disabilities or autistic people is still often indirect, carried out by parents or professionals. \ud \ud Methods: This is a qualitative research which looks at how self-advocates (SAs) with intellectual disabilities or autism participate in DPOs and how they see the role of human rights and laws such as the CRPD in their advocacy. Data was collected in the UK and in Hungary between October 2016 and May 2017. A total of 43 advocates (SAs and other advocates) were interviewed. For the analysis, thematic analysis was used. \ud \ud Results: findings indicate that most participants have limited knowledge of the CRPD and human rights. Human rights are usually seen as vague and distant ideas, less relevant to everyday lives. SAs may not feel competent to talk about the CRPD. The inclusion of SAs in DPOs is mostly tokenistic, lacking real participation. \ud \ud Conclusions: The CRPD can only bring meaningful change to SAs if they get full membership in DPOs.