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. Abstract BackgroundPeople 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?

“It's not easy to change the mentality”: Challenges to sex education delivery for persons with intellectual disability

“…The lack of autonomy of people with intellectual disability is evidenced in the study through the professionals' claims that parents at times even stop services if their requests are not met. Yet, when shifting the argument of the nature of vulnerability from being intrinsic to being contextual, studies confirm that vulnerability arises from the lack of sex education and the inability to identify abusive situations rather than from the intellectual disability itself (Schaafsma et al, 2014; Snipstad, 2021). Snipstad (2021) further discusses the connection between vulnerability and dependency, and makes reference to ableist views, were non‐disabled people tend to assume that people with intellectual disability are intrinsically vulnerable also because of their dependency on others, in this case their parents and service providers.…”

“…Yet, when shifting the argument of the nature of vulnerability from being intrinsic to being contextual, studies confirm that vulnerability arises from the lack of sex education and the inability to identify abusive situations rather than from the intellectual disability itself (Schaafsma et al, 2014; Snipstad, 2021). Snipstad (2021) further discusses the connection between vulnerability and dependency, and makes reference to ableist views, were non‐disabled people tend to assume that people with intellectual disability are intrinsically vulnerable also because of their dependency on others, in this case their parents and service providers. The data reveals how people with intellectual disability who had no dependence on the family could access sex education, even though their families did not agree.…”

“…Nelson et al (2020), quotes a Swedish Report (2018) where teachers assert that their students, who had intellectual disability, were not 'mature enough' (p. 408) to hear about contemporary topics on sexuality, such as sexual and gender diversity. Such claim of immaturity is associated with the label intellectual disability, as it is defined in diagnostic manuals (Snipstad, 2021). This association can be said to have far reaching ramifications.…”

“…This association can be said to have far reaching ramifications. Snipstad (2021) claims that the mere definition of intellectual disability renders a person automatically 'immature in social interactions' and 'lacking general cognitive capacities ' (p. 3). Parents in this study, were also reported to believe that their offsprings did not have the required intellect to understand the content of sex education.…”

‘Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic

“…Fineman argues that this is best achieved by focusing on differences rather than equality, by understanding the way in which different subjects are constructed in political and legal discourse. In recent years, Fineman’s concepts have been increasingly applied to disability and learning disabilities ( Clough, 2017 ; Heikkilä et al, 2020 ; Scully, 2014 ; Snipstad, 2021 ).…”