Discursive (dis)orders of Disability Research : A Critical Discourse Analysis of ’participation in research’ in Swedish Disability Research articles and overviews

Abstract: In this thesis my aim is to analyse and discuss discourses of Swedish disability research, with focus on participation in research by disabled people. My research question is based on an observation that research overviews and evaluations repeatedly argue for the importance of participation of disabled people. This request has been recurrent and more or less intact in its form for over 20 years. My question is why this request has not been fulfilled or altered in its form. I base my theoretical framework and methodology on Critical Discourse Analysis, and the power of language in a constructed and reconstructed social reality, with a semi-structuralist approach as developed by the British sociolinguist Norman Fairclough. In focus is the discursive construction of research participation and participants. My result after a systemic-functional grammar analysis of governmental research reports and peer-reviewed articles published in English, in international academic journals, by researchers with affiliation to Swedish universities, is that participation is discussed in terms of disabled people primarily as the source of information rather than as actual actors in a research process. The discursive construction of disabled participants rests on identification and representation connected to being disabled / having an impairment. A discourse of knowledge validation is based on a division of roles, tasks and labour, in which researchers and participants are constructed in opposing subject positions. Participant influence is constructed in terms of subjectivity and personal interest, as opposed to the objective expertise of the researchers. Discourses are, however, found to be contested and inconsistent, both in terms of conceptual definitions of disability and disability research, and as manifested in actual use of language. The most fixed discourse seems to be that of requests for increased participation, and the attributing of personal experiences to participants, in contrast to attributing professional expertise to researchers.