How should we respond to individuals with disabilities? What does it mean to be disabled? Over fifty million Americans, from neonates to the fragile elderly, are disabled. Some people say they have the right to full social participation, while others repudiate such claims as delusive or dangerous. In this compelling book, three experts in ethics, medicine, and the law address pressing disability questions in bioethics and public policy. Anita Silvers, David Wasserman, and Mary B. Mahowald test important theories of justice (...) by bringing them to bear on subjects of concern in a wide variety of disciplines dealing with disability. They do so in the light of recent advances in feminist, minority, and cultural studies, and of the groundbreaking Americans with Disabilities Act. (shrink)
A feminist ethics that bases morality on dependence or vulnerability challenges the moral priority of uniform over disparate treatment. Persons with disabilities resist equality's homogenization of moral personhood. But displacing equality in favor of caring or trust reprises the repression of those already marginalized. The ethics of difference proves an ineffective remedy for the negative consequences attendant on how historically marginalized groups are different. An historicized conception of equality resolves the dilemma.
Disagreement about the properattitude toward disability proliferates. Yetlittle attention has been paid to an importantmeta-question, namely, whether ``disability'' isan essentially contested concept. If so, recentdebates between bioethicists and the disabilitymovement leadership cannot be resolved. Inthis essay I identify some of the presumptionsthat make their encounters so contentious. Much more must happen, I argue, for anydiscussions about disability policy andpolitics to be productive. Progress depends onconstructing a neutral conception ofdisability, one that neither devaluesdisability nor implies that persons withdisabilities are inadequate. So, (...) first, I clearaway the conceptual underbrush that makes usthink our idea of disability must bevalue-laden. Second, I sketch someconstituents of, and constraints upon, aneutral notion of disability. (shrink)
The article introduces readers to the study of disability, both with respect to the interdisciplinary field of disability studies and the field of philosophy of disability. We then offer an overview of three central areas of philosophical inquiry where feminist work in philosophy and disability has made significant contributions: (1) metaphysics and ontology, (2) epistemology and phenomenology, and (3) ethical, social, and political philosophy.
Elizabeth Barnes’s recently proposed value-neutral model for disability provoked a familiar storm of oft-made objections from philosophers who appear committed to equating being disabled with being intrinsically or inescapably disadvantaged. Their narrow framing of the options for disabled people is influenced, I suggest, by purposes to which “disability” now is put. But there are both epistemic and moral reasons to refrain from importing the normative narrowness imposed by these purposes into our philosophical investigation of disability. Barnes’s ontological account opens up (...) our framing options. Developing a full institutional theory of disability that both rests on and extrapolates from a social ontology of disablement is a promising direction for exploration at the intersect of metaphysics and public policy in the new field of Philosophy and Disability. (shrink)
End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on (...) a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel. Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed. (shrink)
Because medicine can preserve and restore health and function, it is widely acknowledged as a basic good that a just society owes its members. Yet there is controversy over the scope of what should be provided, to whom, how, when and why. This comprehensive and authoritative book - by well-known philosophers, doctors, lawyers, political scientists, and economists - lays a theoretical foundation for understanding the debate, assesses how health care is distributed in different countries and to various social groups, and (...) analyzes practical issues in constructing a socially just health care system. (shrink)
The potential power of predictive genetic testing as a risk regulator is impressive. By identifying asymptomatic individuals who are at risk of becoming ill, predictive genetic testing may enable those individuals to take prophylactic measures. As new therapies become available, the usefulness of genetic testing undoubtedly will increase. Further, when a person's family medical history indicates a propensity towards a particular genetic disease, a negative test result may open up otherwise denied opportunities by showing that this person has not inherited (...) suspect genes. In the latter type of case, a negative test result may reassure the individual that pursuing a particular course of action is worthwhile, or may convince prospective employers that the individual will be a serviceable employee. (shrink)
Giubilini and Minerva ask why birth should be a critical dividing line between acceptable and unacceptable reasons for terminating existence. Their argument is that birth does not change moral status in the sense that is relevant: the ability to be harmed by interruption of one's aims. Rather than question the plausibility of their position or the argument they give, we ask instead about the importance to scholarship or policy of publishing the article: does it to any extent make a novel (...) or needed addition to the literature? Giubilini and Minerva's argument is remarkably similar to one advanced by Michael Tooley in ‘Abortion and Infanticide,’ almost 40 years ago. There have been immense changes in the intervening 40 years: in the ability to diagnose conditions early in pregnancy, in genetics and in the availability of in vitro fertilization; in understanding of the capabilities of persons with disabilities; in law; in economic support and access to healthcare for pregnant women and their children; in social customs and arrangements; and even in philosophy, with developments in feminist thought, bioethics and cognitive science. Some of these changes have been for the better, but others, such as the unravelling of social safety nets, have arguably been for the worse. Any or all of these changes might give rise to moral reasons for the relevance of birth that were not available 40 years ago. These changes might also be relevant to the identification of cases, if any, in which ‘after-birth abortion’ might be considered. If context is relevant to the applicability of moral reasons—as for theorists of justice in the non-idealised world it surely should be—it is questionable whether a view of the birth-line that ignores contextualising change can be adequate. (shrink)
The potential power of predictive genetic testing as a risk regulator is impressive. By identifying asymptomatic individuals who are at risk of becoming ill, predictive genetic testing may enable those individuals to take prophylactic measures. As new therapies become available, the usefulness of genetic testing undoubtedly will increase. Further, when a person's family medical history indicates a propensity towards a particular genetic disease, a negative test result may open up otherwise denied opportunities by showing that this person has not inherited (...) suspect genes. In the latter type of case, a negative test result may reassure the individual that pursuing a particular course of action is worthwhile, or may convince prospective employers that the individual will be a serviceable employee. (shrink)
The 1990 Americans with Disabilities Act enacted a conceptual shift in the meaning of ‘disability.’ Rather than defining ‘disability’ as a disadvantageous physical or mental deficit of persons, it codifies the understanding of ‘disability’ as a defective state of society which disadvantages these persons. In contrast, the standard medical model incorrectly conceptualizes disabled persons as biologically inferior, and thus confines them to the role of recipients of benevolence or care. Turning to an ethic of caring yields counter-intuitive results that conflict (...) with the conceptual apparatus of the ADA. It is argued that in order to liberate social thought from this medical model and thus move the disabled from being socially marginalized to being socially enabled, one must re-conceptualize current practice by adopting the ADA's conceptual framework. Keywords: caring, disability, equality, ethics, health care polic CiteULike Connotea Del.icio.us What's this? (shrink)
(2001). A Neutral Ethical Framework for Understanding the Role of Disability in the Life Cycle. The American Journal of Bioethics: Vol. 1, No. 3, pp. 57-58.
This article argues that, under existing jurisprudence, the disability insurance business will be harmed, not benefited, from broad access to the results of genetic testing identifying people with higher than species-typical genetic propensities for illness.
The idea that disability insurers would benefit if the use of predictive genetic testing expands may seem little short of obvious. If individuals with higher than species-typical genetic propensities for illness or disease are identified, and barred or discouraged from participating in disability insurance programs, is it not obvious that the amount that disability insurers pay out will decrease? Is there any reason to doubt that insurers thus would gain advantage by promoting genetic testing? Writers on this subject typically have (...) taken on faith that advantage goes to whoever knows most about the genetic characteristics of the individual seeking insurance. They therefore have assumed, without proving, that insurers’ interests lie with proliferating genetic information about insurance seekers.Consequently, from a perspective that gives priority to commercial interests, denying insurers the freedom to obtain genetic information about insurance seekers or holders appears obviously damaging and even unfair. On the other hand, from a perspective that gives priority to the interests of citizens who may use insurance, the greater use of and access to predictive genetic testing sets off ethical alarms. (shrink)
Proponents of using medical technology for enhancement sometimes misunderstand how the biology of enhancement works. Appreciation of biological diversity supports a program of enhancement. Acknowledging a liberty right to be biologically different addresses worries abut enhancement’s being undemocratic. Doing so also suggests changes in emphasis to strengthen the case for enhancement.
Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective parents and other (...) care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child’s interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children’s vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child’s welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life. (shrink)
