Any added value? Co‐constructing life stories of and with people with intellectual disabilities

Abstract

Accessible summary People with intellectual disability have often been involved in research, but not in the analysis of data. One reason might be that not many people with intellectual disability have received training in research. This paper describes a project in Austria. In this project, we have looked at the experiences of people with intellectual disability during transition from school to work and in working life. We have collected their life stories over a period of 2 years. To assist with the analysis, we have formed a reference group. In this group, twelve people with intellectual disability look and make sense of the life stories together with the non‐disabled researchers. We think that this helps the project to become more aware of things that are important to people with intellectual disabilities. This is because researchers with disabilities have the insider perspective. They know how it is to live with an intellectual disability In this paper, I show the life story of a woman who tries to hide her intellectual disability. I show how the reference group has worked with the life story and what they found out. SummaryDespite considerable achievement in inclusive research, people with intellectual disabilities have been largely excluded from the critical area of data analysis and theory development. Next to the undoubted complexity of these tasks, this can partly be attributed to higher demands of representativeness that are used to judge the validity of disability research as well as missing training opportunities for people with intellectual disabilities. The paper presents data from the first core research project in German‐speaking countries that was carried out within an inclusive framework. Within the FWF (Austrian Science Fund) financed project ‘Experiences of participation in the (vocational) biography of people with intellectual disability’ at the Department of Education at the University of Vienna, the research team aimed at involving people with intellectual disability in an accompanying reference group in the process of co‐construction of theory through the shared analysis of the collected qualitative data: life stories and narratives of people with intellectual disability. This paper seeks out to show the added value of this approach both methodologically and practically.