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.

Abstract

Keywords:

• Disability
• Social Work Research
• Social Inclusion
• Social Justice

Acknowledgements

The author would like to acknowledge the Paramatta Lions Club in Sydney, Australia for generously funding her young co-researchers who have Down Syndrome to attend a conference and participate in data analysis.

Notes

¹This paper is concerned with the development of Emancipatory Disability Research, which is underpinned by the social model of disability (UPIAS, 1976; Oliver, 1990). Central to the political project of the social model is its claim that the term “disability” describes the “mechanisms of social oppression that all disabled people face”, rather than their impairment. This assertion impacts upon the language of disability. The social model recommends that in terms of disabled people as a group, irrespective of impairment, we should use the term “disabled people” (Carson & Davis, 1999). However, self-advocacy groups tend to prefer people-first language. In some (but not all) settings in the UK, self-advocacy groups use the term “people with learning difficulties” (e.g., People First and Values into Action), hence reserving the term “disability” to describe social oppression. In Australia, self-advocacy groups prefer the term “people with an intellectual disability” and so, in respecting their wishes, the term “people with an intellectual disability” is used in this paper. However, such linguistic inconsistency with the social model is problematic and I do have the concern that “people with an intellectual disability” simply translates as “people with an intellectual impairment”. Hence, impairment and disability, once again, can become synonymous and the social model definition of “disability” can be lost.