Days of our lives : people with intellectual disabilities describe their experience and viewpoints of services : a thesis presented in partial fulfilment of the requirements for the degree of Master of Social Work at Massey University

Abstract

This thesis is drawn from the experiences and viewpoints expressed by five individuals with intellectual disabilities. The objectives of the research in this thesis were to establish a view from below of disability services, and to identify an agenda for change. The main research question is; how can we improve the quality of daily lived experience in disability services for people with intellectual disabilities? In this research I developed a set of emancipatory principles on which the process was based. The participants voices were heard through individual interviews and group meetings. On analysis their viewpoints combined into ten themes that described their past and current experiences and gave clear direction as to how services should change. I set out to provide an opportunity for people with intellectual disabilities to speak safely outside of the service structure and create the agenda as to what was important for them to share. The issues raised by the participants revealed the power and control exercised by service providers and the lack of opportunity service users have to exercise choice over fundamental aspects of their lives; who they live with, where they live, how they are supported and how their daily environments are structured. The messages they give are simple and clear. They ask that people listen to them and include them in decisions made about their lives. The viewpoints that are reflected here place the participants as part of an oppressed group, within a service structure dominated by the principle of normalisation and an ideology of disability based upon personal tragedy. Through gaining an understanding of their oppression and also of their achievements, we can create a new set of goals based on emancipatory principles: namely reciprocity and empowerment. It is argued that we can move beyond the binary division of service provider and service user to services based on partnership.