Inklusion en illusion? : Om delaktighet i samhället för vuxna personer med utvecklingsstörning

Sammanfattning: The background to this thesis lies in the great changes that have occurred in the disability field during the last threes decades. The purpose of this thesis is to describe, analyze and try to understand how these changes impact on life conditions for adult persons with mild intellectual disabilities. The main focus in this study is to listen to the experiences of people with intellectual disabilities themselves. The questions addressed in the study are; how do people with intellectual disabilities experience participation, citizen-ship, social exclusion and social inclusion in society? Where are their daily arenas and what characterizes those arenas in terms of citizenship, exclusion and inclusion? What type of experiences do they have from encountering people in the community, from encountering the organisations and staff that provide support and service and from the consequences of disability policies in practise? How do staff close to them work to reach the goals of participation? What role can professionals play in supporting participation? Which possibilities and barriers do the staff experience?Empirical data for the study has been gathered by qualitative methods, mainly participant observations and interviews but also from document analysis of local authority documents, official guidelines, laws and national and international disability policy documents.The theoretical framework is based on theories about citizenship and participation. Social exclusion and social inclusion are the sensitizing concepts in this study. For the interpretation and analysis theories about citizenship, participation and categorization were used.In the light of the empirical findings the results of the study show that three main themes were promi-nent. The first theme concerned the daily arenas, were there were both excluded arenas and included are-nas with various forms of interaction with the society. The arenas for support and service in housing and daily activities are described as excluded arenas with mainly internal social interaction. On the other hand the new arenas such as daily activity centres, located in the community, such as cafés, shops run by peo-ple with intellectual disabilities together with staff had frequent interaction with other people in the soci-ety. The second theme concerned the content in the encounters between respondents with intellectual disabilities and different actors in the community. The informants had both positive and negative experi-ences of these encounters. The encounter with the disability policy was, according to this dissertation, that the user informants hade many experiences of lacking social citizenship but also that they experienced structural inclusion when politicians listen to them and answered their questions. The third theme con-cerned how the staff works to reach the goals of participation where both possibilities and barriers exist on structural and individual levels. This study illustrates the user informants’ many experiences of citi-zenship and social exclusion but also examples of social inclusion.In the concluding chapter the results are discussed and analyzed in relation to the theoretical frame-work, where the concept of categorisation was very important. Finally, the description of the process clearly illustrates the difficulties for disability service organisations to develop support and services that are adapted to the actual disability policy. The results shed light on the gap between theory and practise.Some of the most positive changes towards inclusion in society for people with intellectual disabilities come from services run by users and staff close to them. Final conclusions and reflections of the results in the study are that support and service also can be discussed in terms of universalism in order to reduce the process of categorisation.