1. A collaborative reflection on social justice and democracy Kristín Björnsdóttir Steindór Jónsson University of Iceland

2. The research Inclusive qualitative research Collaborative life histories (2004-2006) – 3 men and 3 women with learning difficulties – Born 1974-1984 Interviews with 23 young adults with learning difficulties Research on social participation Democracy and citizenship in relation to social participation

3. Who we are Kristín Known disabled people all my life Has mostly worked with children and youth with learning difficulties Research interest include: – Inclusive research – Intersectionality – Identity and culture We have know each other for 16 years Collaborated on research since 2000 Steindór A member of the integration generation Lived with my family as a child Got my education in mainstream settings I am a passionate advocate Research interest include: – Social equality – Icelandic welfare system Live on my own Work at a sheltered workshop

4. Democracy Democracy is equal shares of power and rights Common idea on democracy is equality and power All citizens should possess equal shares of power Civic duty – To vote – Obey the law – Pay taxes – Recognize other people’s rights

5. Democracy and social participation Private space – Home – family life Public space – Education – Work – Leisure – Politics

6. Segregation The research participants lacked access to social institutions Their social participation was most often within segregated activities organized for people with learning difficulties We did not evaluate these activities. We were surprised to see how much time they spent participating in segregated activities.

7. Segregation and democracy Segregation cannot be understood as democracy Segregation does not take place in the public space It takes place on the margin and is organized by professionals and policy makers People with learning difficulties are not voluntarily segregated Segregation is discrimination Segregation violates human rights Segregation is a form of oppression

8. Private space People with learning difficulties lack power in private and public space Had little control over their homes and their time and activities Support was often substandard Support was often not what was needed Sometime they lacked support

9. Democracy and private space The professionals and carers seemed to posses more power Their private space is not private Support often had institutional qualities Professionals need to recognize people’s privacy as human rights Everyone talked about lack of power in daily lives

10. Public space Lack power in public space They have limited access to mainstream education institutes It is difficult to get jobs Many people attend day care or work at sheltered workshops Many people forced to live in social housing or group homes Forced into a low socio-economic status Rely on disability pensions or minimum wages The Icelandic welfare system does not allow pensioners to save money

11. Public space and democracy Often segregated from society Do not take active part in public space They are not visibly active in political practice Few disabled people members of the parliament Few take actively part in political committees Few work for the government in the ministries Limited opportunities to inform on policy making Policy makers not visible or accessible People with learning difficulties have also been marginalized in the disability movement

12. Non-participation People with learning difficulties have a status of non-participation in society Non-participation becomes negative when it is the results of restrictions made by Others Non-participation can dominate people’s lives Some people internalize the non-participation Non-participation can threaten the idea of a true citizen

13. Self-advocacy Self advocacy alternative to the internalization of non- participation Individuals can be self-advocates and self-advocacy can also take place in formal groups Self-advocacy is a social strategy to gain access to society With self-advocacy we can create new knowledge about learning difficulties that can be used by others Self-advocacy can be understood as civic duty Self-advocacy will lead to better future for society

14. Conclusion Iceland is not a true democracy The government has not secured or actualized the right of people with learning difficulties to participate in society What kind of participation is relevant for being a full member of democracy? Are full members of democracy segregated, oppressed, and discriminated against?

15. THANK YOU!