Flexible and Responsive Research: Developing Rights-Based Emancipatory Disability Research Methodology in Collaboration with Young Adults with Down Syndrome

Abstract

This paper examines the development of the Emancipatory Disability Research (EDR) paradigm; principles defined by various groups and authors within the disability movement that are intended to ensure the integrity of disability research design and practice. It is argued that these principles are commensurate with the tenets underpinning the United Nations Convention on the Rights of Persons with Disabilities (2008). The paper then relates the principles of EDR to participatory research involving people with an intellectual disability, drawing both on existing studies and the author's ongoing research project, which is conducted in partnership with young adults with Down syndrome and other key stakeholders. The author advocates for the ongoing development and adaptation of the EDR ''model'' in respect of people with an intellectual disability. This requires the academic researcher to embrace their position as a Human Rights activist, and render the research process flexible and continuously open to diverse forms of participation by co-researchers who have an intellectual disability, if they are to influence the research process and outcomes and their voices are to be heard.The methodology of disability research and, in particular, research involving people with an intellectual disability, raises vital philosophical, political, and practical issues. As a non-disabled researcher, what is the moral justification in my undertaking this work? What ''standpoint'', framework, and principles if any, can guide me? How can I ensure participation in formulating research questions, gathering and analysing data, and presentation of findings? What conclusions can those with a disability draw and how can they and society benefit? The purpose of this paper is to explore the United Nations Convention on the Rights of Persons with Disabilities (which entered into force in May 2008), the Social Model of disability, the Emancipatory Disability Research (EDR) paradigm, and the work of other critical researchers in relation to how these might guide the position and practice of the non-disabled researcher and

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