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 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 • 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

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!