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‘You Say You’re Happy, but…’: Contested Quality of Life Judgments in Bioethics and Disability Studies

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Abstract

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience.

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Notes

  1. In this paper I use the term “disabled people” or “disabled person” rather than “people with disabilities” though both are common terms in the disability studies movement. In part, this language attempts to make clear that the disability is not an attribute inherent in the person (something she carries with her), but is rather a description of her social situation. She is dis-abled by oppressive circumstances or social structures. The disability studies movement has commonly relied on a distinction between impairment and disability (where the former is more objectively determined, part of a person’s body, and sometimes bad but sometimes neutral, while the latter is typically bad in that it involves unfair disadvantage imposed by society, though it can be a useful organizing concept that collects people who are similarly oppressed). I understand the historical need for this distinction, but am sympathetic to some critiques of the social model of disability regarding the clarity of and grounding for this distinction. I do not think impairment is a purely natural phenomenon; its identity and meaning are socially determined in many respects, and its use as a label, too, can be a form of oppression. Thus using the term “people with impairments” has its own problems. Nonetheless, in some instances I will use this term to refer to people whose bodies are currently labeled as impaired, a situation which may or may not give rise to the social phenomenon of disability. The debate over terminology is on-going [1, 2]. The social model’s distinction between impairment and disability is best stated in the work of Oliver [3]. For critiques of the distinction, see Tremain [4, 5] and Shakespeare [6].

  2. I don’t want to over-romanticize impairment. Although I talk about impairment quite generally in this paper, I realize that impairment covers a very wide range of bodily conditions with their social labels. People with very profound impairments will clearly have different sorts of experiences and needs than people with much less severe impairments, and may be less able (or even unable) to offer any “voice” about their quality of life. For the present, my thinking is centered on people with impairments that allow them to express their views about quality of life and to participate in social and work worlds if appropriate accommodations are made.

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Acknowledgments

I am grateful for the detailed comments from the anonymous reviewers for the special issue and its guest editor, Shelley Tremain, as well very helpful advice provided by Dennis Lang, my colleague in the University of Washington Disability Studies program.

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Goering, S. ‘You Say You’re Happy, but…’: Contested Quality of Life Judgments in Bioethics and Disability Studies. Bioethical Inquiry 5, 125–135 (2008). https://doi.org/10.1007/s11673-007-9076-z

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