Abstract
Law and the ethics of everyday care for persons with intellectual disability: Time for a rethink
This paper aims to consider what place should be given to legal considerations in ethics of everyday care, focusing on the case of persons with intellectual disability (Pwid). Rather than focusing on a fuzzy dichotomy between paternalistic protection from harm and greater autonomy, this analysis explores whether legal considerations can render the ethics of everyday care for Pwid more practical, as well as more protective of the rights of Pwid.
The recent Report of the Select Committee on the Mental Capacity Act 2005 (MCA) highlights that the empowering ethos of the MCA has not received wide recognition from care professionals and those entrusted with the everyday care of persons falling within the MCA’s scope. At the same time, recent incidents, such as the preventable death of Connor Sparrowhawk in a residential unit for Pwid, demonstrate that there is a darker undertow of disregard for the rights of Pwid. The claim of the paper is that fostering respect for the rights of Pwid is an issue where legal considerations must influence the reasoning and practice of the ethics of everyday care.
How can this be achieved? One way of looking at the issue is to go beyond the dichotomy of paternalism/autonomy by requiring carers to respect the dignity of Pwid. In Ronald Dworkin’s theory of moral individualism, people have experiential and critical interests: experiential interests are those we would associate with physical wellbeing, such as absence or cold or hunger. Critical interests on the other hand, are interests closely associated with personal decisions about what makes a person’s life worthwhile. Withholding or frustrating such critical interests would lead a person to believe that her life is not a success. Following Dworkin’s argumentation, dignity in the context of care means not to suffer indignity, which in turn can be understood practically as to respect a person’s experiential and critical interests. In the case of Pwid, their everyday care has to go beyond protecting their experiential interests, but serve their critical interests as well. The provision of support to Pwid has to be such, so as to empower them to make their own decisions about what is important in their lives. Focusing on advancing experiential and critical interests avoids the pitfall of simplistic considerations as to what is in the best interests of a Pwid. The carer has to engage in a moral reasoning as to what course of action will protect the experiential interests of the Pwid under care, as well as safeguard, or even better, advance the critical interests of the Pwid. Conflicts between the two kinds of interests are inevitable, and the carer should focus on the person’s wishes before reaching any conclusion as to what care she should give to the Pwid.
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 Biography
Andreas Dimopoulos is Lecturer in Law at Brunel University since 2011. His research interests focus on the intersection of human rights and disability, with an emphasis on intellectual disability. His monograph, Issues in the Human Rights Protection of Intellectually Disabled Persons, which was published by Ashgate in 2010, develops a legal argument for interpreting the human rights of persons with intellectual disability, particularly where autonomy is considered to be absent. A new monograph, The Human Rights Approach to Disability will be published by Routledge.
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