Talking it through: involving people with communication difficulties in research

2004 Conference

This paper describes an ethnographic research project that documented the social exclusion of people with severe aphasia (a communication disability that commonly follows stroke). Our project was intended to be as inclusive as possible of the people it was about, and was monitored by an advisory group comprising people with aphasia, some with very marked communication difficulties.

This paper focuses on the dissemination and implementation stages of the project. It explores some of the challenges, tensions and paradoxes raised in research that seeks to be inclusive of those people with aphasia it is about – particularly when language, the medium of research, is compromised. We describe the collaborative process of writing an accessible report on the project, and consider how this compares with the standard report.

We consider the power and potential of ethnographic stories from the project as the basis for dissemination to a wide audience, and training for health, social care and voluntary service providers. We ask whether and how people with communication disabilities can play an authentic part in research and outline some of the lessons we have learned in this endeavour.