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Added by: Rochelle DuFord
Abstract: I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child 'forever small.' The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay 'forever small' and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.Kittay, Eva Feder. When Caring Is Just and Justice is Caring: Justice and Mental Retardation2001, Public Culture 13(3): 557-580-
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Added by: Jamie Robertson
Summary: In this paper, Kittay advances a conception of justice that 'begins with an acknowledgement of dependency and seeks to organise society so that our well-being is not inversely related to our need for care or to care' (576). Her motivation for advancing this view is that ideals of citizenship in liberal society, including independence and productivity, perpetuate the victimisation, social exclusion, or stigmatisation of people with mental retardation and their carers. This is because liberal definitions of personhood do not provide resources for responding in a morally adequate way to the mutual dependence of people with mental retardation and their carers/advocates. People with mental retardation are inescapably dependent because of their central need for attentive care. And, carers' work is so deeply other-directed that they also do not fit the liberal model of the rationally self-interested actor. Thus, both carers and their charges are vulnerable and need to be advocated for so that they can be seen as having important entitlements to public resources and claims to justice. To this end, Kittay proposes a conception of personhood that is based on relationships. Although those with mental retardation are inherently dependent, they still count as persons because they are able to participate in relationships. This makes them entitled to the satisfactions that make life worth living. To achieve the twin goal of achieving justice for familial or paid carers, Kittay advances a new principle of justice, doulia, which calls for larger society to support those who care for the inexorably dependent. Kittay takes her relational conception of personhood and her principle of doulia to ensure that appropriate forms of social organization exist to support all those who become dependent. She claims her view is needed because principles of charity and beneficence are not adequate since they are consistent with the continued stigmatization of mental retardation and care work, and ground only low-priority social obligations.Comment: This paper, with it's helpful discussions of the elements of the liberal tradition with which Kittay specifically takes issue and the inadequacies of the Americans with Disabilities Act, would be an appropriate reading for courses about the philosophy of disability or about liberal political theory.
Kuhse, Hoyt, Singer, Peter. Should the Baby Live? The Problem of Handicapped Infants1985, Oxford University Press.-
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Added by: Clotilde Torregrossa, Contributed by: Simon Fokt
Publisher's Note: Few subjects have generated so many newspaper headlines and such heated controversy as the treatment, or non-treatment, of handicapped newborns. In 1982, the case of Baby Doe, a child born with Down's syndrome, stirred up a national debate in the United States, while in Britain a year earlier, Dr. Leonard Arthur stood trial for his decision to allow a baby with Down's syndrome to die. Government intervention and these recent legal battles accentuate the need for a reassessment of the complex issues involved. This volume--by two authorities on medical ethics--presents a philosophical analysis of the subject based on particular case studies. Addressing the doctrine of the absolute sanctity of life, Singer and Kuhse examine some actual cases where decisions have been reached; consider the criteria for making these decisions; investigate the differences between killing and letting die; compare Western attitudes and practices with those of other cultures; and conclude by proposing a decision-making framework that offers a rational alternative to the polemics and confusion generated by this highly controversial topic.Comment:
Nussbaum, Martha. Frontiers of Justice: Disability, Nationality, Species Membership2006, Cambridge, MA: Harvard University Press.-
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Added by: Simon FoktPublisher’s Note:
Publisher: Theories of social justice are necessarily abstract, reaching beyond the particular and the immediate to the general and the timeless. Yet such theories, addressing the world and its problems, must respond to the real and changing dilemmas of the day. A brilliant work of practical philosophy, Frontiers of Justice is dedicated to this proposition. Taking up three urgent problems of social justice neglected by current theories and thus harder to tackle in practical terms and everyday life, Martha Nussbaum seeks a theory of social justice that can guide us to a richer, more responsive approach to social cooperation. The idea of the social contract--especially as developed in the work of John Rawls--is one of the most powerful approaches to social justice in the Western tradition. But as Nussbaum demonstrates, even Rawls's theory, suggesting a contract for mutual advantage among approximate equals, cannot address questions of social justice posed by unequal parties. How, for instance, can we extend the equal rights of citizenship--education, health care, political rights and liberties--to those with physical and mental disabilities? How can we extend justice and dignified life conditions to all citizens of the world? And how, finally, can we bring our treatment of nonhuman animals into our notions of social justice? Exploring the limitations of the social contract in these three areas, Nussbaum devises an alternative theory based on the idea of capabilities. She helps us to think more clearly about the purposes of political cooperation and the nature of political principles--and to look to a future of greater justice for all.Comment: This excellent book is valuable in teaching for two main reasons: (1) it extends and expands on the application of the capability approach to non-human animals, the disabled and the global poor; and (2) it offers a valuable critique of Rawls' theory of justice.
Priest, Maura. Transgender Children and the Right to Transition: Medical Ethics When Parents Mean Well but Cause Harm2019, The American Journal of Bioethics. 19 (2): 45-59.-
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Added by: Chris Blake-TurnerAbstract:
In this article, I argue that (1) transgender adolescents should have the legal right to access puberty-blocking treatment (PBT) without parental approval, and (2) the state has a role to play in publicizing information about gender dysphoria. Not only are transgender children harmed psychologically and physically via lack of access to PBT, but PBT is the established standard of care. Given that we generally think that parental authority should not go so far as to (1) severally and permanently harm a child and (2) prevent a child from access to standard physical care, then it follows that parental authority should not encompass denying gender-dysphoric children access to PBT. Moreover, transgender children without supportive parents cannot be helped without access to health care clinics and counseling to facilitate the transition. Hence there is an additional duty of the state to help facilitate sharing this information with vulnerable teens.Comment (from this Blueprint): Priest argues that the state should provide puberty-blocking treatment (PBT) for trans youth, even if their parents are not supportive. Priest’s argument is important partly because it avoids the issue of whether adolescents and children can give properly informed consent. This is a point that some of Priest’s critics seem to have missed (see, for example, Laidlaw et al. 2019. “The Right to Best Care for Children Does Not Include the Right to Medical Transition”, and Harris et al. 2019. “Decision Making and the Long-Term Impact of Puberty Blockade in Transgender Children”). Priest’s conclusion is founded instead on a principle of harm avoidance.
Silvers, Anita. From the Crooked Timber of Humanity, Beautiful Things Can Be Made2000, in: Brand, Peg Zeglin (ed.), Beauty Matters, Bloomington: Indiana University Press, pp. 197-221.-
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Added by: Hans Maes
Summary: Starting from our appreciation of cubist portraits, asks why it to commonplace for us to contemplate distorted depictions of faces with eagerness and enjoyment but to be repelled by real people whose physiognomies resemble the depicted ones. Argues that the aesthetic process that permits our attraction to portrayed human anomalies can be expanded so as to offset the devalued social positioning of real people whose physiognomic features are anomalous. Presenting an anomaly as originality rather than deviance is crucial.Comment: Useful in discussing portraiture and depiction, beauty, as well as the links between aesthetics and ethics.
Artworks to use with this text:
Pablo Picasso, Maya with a Doll (1938)
Cubist portrait of a child. Silvers interestingly compares this to a photo of a child with osteogenesis imperfecta. Useful in discussing portraiture and depiction, beauty, as well as the links between aesthetics and ethics.
Artworks to use with this text:
Pablo Picasso, Maya with a Doll (1938)
Cubist portrait of a child. Silvers interestingly compares this to a photo of a child with osteogenesis imperfecta.
Silvers, Anita. From the Crooked Timber of Humanity, Beautiful Things Should Be Made!2011, APA Newsletter, 10(2): 1-5.-
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Added by: Hans Maes, Contributed by: Christy Mag Uidhir
Summary: Follow-up essay on her 'From the Crooked Timber of Humanity, Beautiful Things Can Be Made' (note the one-word difference in the title). Adds the idea that medical professionals have at least a mild duty to cultivate aesthetic judgment of individuals with biological differences. Also makes the case that beauty is not the same thing as attractiveness or normalcy.Comment: Useful in discussing portraiture and depiction, beauty, as well as the links between aesthetics and ethics.
Artworks to use with this text:
Riva Lehrer, Susan Nussbaum (1998)
This portrait of disability activist Nussbaum invokes Picasso's famous portrait of Gertrude Stein (1906). It is discussed in Garland-Thomson. Useful in discussing portraiture and depiction, beauty, as well as the links between aesthetics and ethics.
Artworks to use with this text:
Riva Lehrer, Susan Nussbaum (1998)
This portrait of disability activist Nussbaum invokes Picasso's famous portrait of Gertrude Stein (1906). It is discussed in Garland-Thomson.
Stark, Cynthia A.. How to Include the Severly Disabled in a Contractarian Theory of Justice2007, Journal of Political Philosophy 15 (2): 127-145.-
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Added by: Carl Fox
Content: Modifies and then defends a Rawlsian theory of justice from the charge that it cannot adequately account for the claims of severely disabled individuals who cannot participate fully in schemes of cooperation.Comment: Best suited as specialised or further reading on disability and Rawlsian theories of justice.
Tremain, Shelley. Reproductive freedom, self-regulation, and the government of impairment in utero2006, Hypatia 21(1): 35-53.-
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Added by: Simon Fokt
Abstract: This article critically examines the constitution of impairment in prenatal testing and screening practices and various discourses that surround these technologies. While technologies to test and screen (for impairment) prenatally are claimed to enhance women's capacity to be self-determining, make informed reproductive choices, and, in effect, wrest control of their bodies from a patriarchal medical establishment, I contend that this emerging relation between pregnant women and reproductive technologies is a new strategy of a form of power that began to emerge in the late eighteenth century. Indeed, my argument is that the constitution of prenatal impairment, by and through these practices and procedures, is a widening form of modern government that increasingly limits the field of possible conduct in response to pregnancy. Hence, the government of impairment in utero is inextricably intertwined with the government of the maternal body.Comment: Most useful in teaching on ethical issues at the beginning of life. It can be also used in teaching on the ethics of autonomy, freedom of choice, and feminism in general.
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Kittay, Eva Feder. Forever Small: The Strange Case of Ashley X
2011, Hypatia, 26 (3): 610-631.
Comment: This reading both introduces the controversial case of Ashley X and also provides a set of ethical considerations concerning altering the bodies of persons with severe cognitive disabilities. It would serve as an excellent introduction to a unit on disability, a unit on the ethics of care, or concerning the limits of parental paternalism.