Concerns regarding the use of the vulnerability concept in research on people with intellectual disability

Abstract

Accessible Summary People with intellectual disability are often described as “vulnerable” or a “vulnerable group.” The paper focuses on vulnerability as part of an ethical discussion in research. The paper says that people with intellectual disability are not necessarily more vulnerable than others in all areas of life but, like everyone else, experience many social contexts that may or may not place them in vulnerable positions. The paper is concerned with how the negative attributes often related to the label intellectual disability and vulnerability affect the decisions and views of researchers. AbstractBackgroundPeople with intellectual disability are often defined as a vulnerable group. The feminist philosopher Jackie Scully argues that vulnerability is often associated with qualities such as immaturity, helplessness, victimhood, passivity and so forth. As research is a social activity, the qualities associated with vulnerability affect researchers’ decisions about who to include and exclude from their research project as well as influencing their interpretations of the research participants’ answers, behaviour and actions. This may result in excluding people with intellectual disability from research or that their ways of being becomes interpreted as mere symptoms of their diagnosis rather than subjective opinions and experiences.ConclusionBy addressing these issues through the work of Norwegian philosopher Hans Skjervheim, this paper contests traditional interpretations of vulnerability and instead argues that vulnerability should be related more specifically to each individual research project and prompt questions such as: How do we protect these particular participants from harm?