The Individualist Model of Autonomy and the Challenge of Disability

Abstract

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions-the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people's ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents' decisions indirectlythey structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decisionmaking, we need to pay attention to the social structure that frames people's decision.

Challenging Standard Concepts of ‘Humane’ Care through Relational Auto-Ethnography

“…Simultaneously, in recent decades, intertwining ideas of self-determination and well-being have received tremendous support in the disability movement and in bioethics, guaranteeing people with disabilities a voice and protecting them against any patronizing and unwanted paternalism. However, less attention has been paid to the ableist ideology which seems to underpin these ideas, including the social structures which influence any form of decision-making (Ho, 2008).…”

“…Nevertheless, modern care policies seem to presuppose an 'ideal(ized) client/patient', namely an able-minded, autonomous agent who seeks independence and appropriates care services as such. To be able-bodied and able-minded is indeed often the ideal on which meanings of a good life are constructed (Hertogh, 2010;Ho, 2008). These meanings underlie not only 'the social and professional structures within which discussions and decisions regarding various impairments are held' (Ho, 2008, p. 198) but also the aims and 'consumption' of (institutionalized) care services that coshape these structures.…”

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AbstractWhat is deemed 'good' or 'humane' care often seems to be underpinned by a standard ideal of an able-bodied, autonomous human being, which not only underlies those 'social and professional structures within which narratives and decisions regarding various impairments are held ' (Ho, 2008), but also co-shapes these structures. This paper aims to explore how a relational form of auto-ethnography can promote good care.

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Nudging and obesity: How to get rid of paternalism?

“…All of us are related to an outer world, to family and networks of friends, etc. Consequently, more and more patient autonomy is understood as a thick concept or as 'relational autonomy' leaving the idea of fully independent beings behind [6,7] .…”

Motivations for seeking experimental treatment in Japan

“…Some authors speak of the 'biotechnological illusion', questioning the idea that biotech enhancement or 'normalisation' can take place without considerable efforts and sacrifice, and that normalisation can fix 'the problem' (Winance et al, 2015). Others have criticised forms of health governance that define individuals as autonomous subjects expected to make 'responsible' choices among a narrowed down range of options (Callon and Rabeharisao, 2004;Davis, 2002, p. 30;Ho, 2008). On the other hand, there are also patient and health organisations that zealously engage in activities aimed at finding stem cell 'cures ' and 'treatment' (Sleeboom-Faulkner et al, 2016) and many patients participate in website forums on the internet (Song, 2017;Kim, 2012) in the hope to find innovative biomedical cures or means to raise their quality of life.…”