Self-advocacy : New roles strengthen self-determination but also resistance

Aim: This study aimed to further understand the new forms of self-advocacy in Sweden by describing and analyzing the characteristics and organisation of the movement and its activities and by analyzing the meaning for the members and the influence for identifications, self-determination, relations and daily life. Method: A national mapping identified more than 60 self-advocacy groups. Case studies of four groups, selected to reflect organisational diversity, were conducted using interviews, focus-groups, observations and document review. Results: Self -advocacy groups can be everything from totally independent to controlled by parents or staff. Despite this, the self-advocacy groups have an important impact on the lives of their members through the value they experience by achieving independence, self-determination and social connections with each other and outsiders. The most independent groups have also mounted resistance to society´s views and treatments of people with ID and the ways of delivering services. Conclusions: Self-advocacy-groups in Sweden are important to their members daily life and are slowly beginning to influence attitudes towards people with ID and traditional ways to offer and organise support and service. © 2016 MENCAP, the International Association for the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.