Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

In this paper, I argue that disabled people have a right to assistive technology, but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the (...) theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society’s dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension. (shrink)

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a non-accommodating environment; (...) (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

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. (shrink)

Menschen mit psychischer Erkrankung sterben statistisch gesehen früher als die Allgemeinbevölkerung. Ein Grund hierfür ist, dass sie eine schlechtere somatische Gesundheitsversorgung erhalten. Wir argumentieren, dass ableistische Netzwerke sozialer Bedeutung zu einer Abwertung der epistemischen Kompetenz von Menschen mit psychischer Erkrankung führen. Diese Abwertung kann mit dem Konzept der testimonialen Ungerechtigkeit erfasst werden. Testimoniale Ungerechtigkeit bezeichnet das ungerechtfertigte Herabstufen der Glaubwürdigkeit einer*s Sprecher*in aufgrund eines Vorurteils gegen ihre*seine soziale Identität. Wir analysieren ethische und epistemische Folgen testimonialer Ungerechtigkeit als wichtige Ursachen der (...) schlechteren Gesundheitsversorgung von Menschen mit psychischer Erkrankung. Testimoniale Ungerechtigkeit kann zu medizinischen Behandlungsfehlern führen und für Betroffene schwerwiegende gesundheitliche Folgen nach sich ziehen. Zudem kann sie zu einem Vertrauensverlust von Menschen mit psychischer Erkrankung in das Gesundheitssystem führen. Daher trägt testimoniale Ungerechtigkeit zur strukturellen Diskriminierung von Menschen mit psychischer Erkrankung bei. Vor diesem Hintergrund diskutieren wir, wie die somatische Gesundheitsversorgung unter ethischen Gesichtspunkten verbessert werden kann. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)