Conceptualisations of what constitutes literacy for adults with intellectual disability are drawn from psychometric measures of dominant school-based literacies. Such conceptualisations do not recognise those literacies that are used by people with intellectual disability as they negotiate their everyday environments. This narrow view of literacy for this group may lead to marginalisation and devaluing of their literate abilities. So too, traditional methods of research in which the researcher undertakes research on individuals with intellectual disability as subjects of study, do not recognise their right to be integrally involved in research that concerns them. Thus, this project used participatory research in which a group of young adults with intellectual disability became research partners and investigated their literacy use as they negotiated their everyday community environments. As this thesis incorporates publications, this abstract is presented as chapters/articles rather than as a traditional abstract.
Chapter 1 (Prologue) explores personal perspectives that shaped the theoretical underpinnings of literacy and disability framing this project. The prologue highlights the need to put aside traditional teaching approaches in favour of a social practices approach to literacy. It also describes how personal experience of disability shaped the principal researcher’s understanding of models of disability and led to the selection of a phenomenological sociology of impairment, together with a Deleuzoguattarian rhizomatic view of becoming which underpin this research.
Chapter 2 (Introduction) introduces the context for the project, presenting the aims of this research and the approach to investigating the research questions. The significance of the research is outlined. The chapter concludes with an overview of the thesis.
Chapter 3 (article) draws on New Literacy Studies to argue for broadening conceptualisations of literacy to include those literacies that are used by individuals in negotiating their everyday environments. Using a phenomenological sociology of impairment, this chapter argues for the use of participatory research methodologies as ways of exploring everyday literacy use of individuals with intellectual disability.
Chapter 4 presents the possible approaches of ethnomethodology, participatory research and action research for undertaking this project within a qualitative research design. The research partners are introduced and the procedures for ethical approval, recruitment, and obtaining and providing informed consent are described followed by an outline of the project structure and research sessions. Reliability and validity methods used in this project are then overviewed. The final section of this chapter outlines data analysis procedures.
Chapter 5 (article) presents findings about the literacy strategies that the research partners used in negotiating their everyday community environments. Findings revealed that the partners engaged in many literacy events in their daily lives. They used multiple literacy strategies that combined dominant, school-based and context specific strategies.
Chapter 6 (article) presents findings about the development of research skills used by the research partners with intellectual disability in becoming researchers. Using Action Research (AR), a process was established through which research could be undertaken by the research partners. Three domains of research were identified –knowledge, conceptual understandings, and skills. Data related to these were collected using a range of qualitative instruments. Within these research domains, 18 subsets were identified and are discussed. Findings showed the importance of the interconnection and interplay of all three domains in the research partners becoming researchers.
Chapter 7 (article) presents the research story of the first research partner Emma, in her journey of becoming a researcher. Emma is the first author of this article, which was co-written with the principal researcher. Emma presents her perspective about this research project and becoming a researcher.
Chapter 8 (article) discusses unanticipated issues related to the ethics of participatory research that were encountered in undertaking and reflecting upon, this project. The purpose of this article is not to present solutions but to raise awareness of these issues for future research. Issues around conflicting views of disability, competing obligations, university requirements, and researcher disability were encountered and are discussed in this article.
Chapter 9 is the final discussion. The findings are synthesised and discussed in two sections, first using the research questions that guided this project, and second returning to the argument raised in Chapter 3 (article) about the need to reconceptualise literacy and research for young adults with intellectual disability. Novel contributions that this research adds to the current literature and understandings of intellectual disability, literacy, and participatory research drawn from the theories that were used to frame the project are discussed together with implications for education, community and future research. Limitations of this project are presented followed by concluding remarks.