Abstract

This paper discusses a number of ethical issues that arise in the context of ethnographic research with people with severe intellectual disabilities and mental health problems living in closed institutions. These very vulnerable people have tended to live emotionally and physically deprived lives in segregated and bleak environments, and because they cannot communicate through speech, and often have seriously challenging behaviour, they have tended to become socially and physically isolated from society. Most research with people who do not communicate verbally has been quantitative, or conducted through informal and formal carers. Ethnographic research, on the other hand, involves spending long periods of participant observation with people in their ‘natural’ settings, providing intensely qualitative material, in order to present data as far as possible from each individual's perspective. Such research provides rich and emotionally powerful material which is often distressing and even shocking. This raises a number of ethical issues in relation to the conduct of such research, including questions regarding consent – who can give consent for someone who does not have the capacity to give consent themselves? The ethics of publication of such research are also discussed. This paper outlines the reasons why such research, and its publication, is vital for the futures of institutionalized men and women with severe intellectual disabilities.