Self-advocacy : organization and resistance in Sweden

Aim: In the last decade, young adults with intellectual disability (ID) have begun to self-organize in order to increase power over their own lives and remove barriers to their social participation in society. This study aimed to further understand the new forms of self-advocacy in Sweden by describing and analyzing 1) the characteristics and organization of the movement and its activities; 2) the influence of membership on self-identity, self-determination, social relationships and daily life; and 3) the influence of the movement on social attitudes and services to people with ID. Method: A national mapping exercise identified more than 60 self- advocacy groups. Case studies of four organizations, selected to reflect organizational diversity, were conducted using interviews, focus-groups, observations and document review. Results: Despite variability in organizational form and size, self-advocacy groups have an important impact on the lives of their members and have mounted resistance to society’s views and treatment of people with ID and the traditional ways of delivering services. Conclusion: The new self-advocacy movement in Sweden is beginning to influence the way Swedish society regards people with ID, and reshape support services to enable greater service user control.