The Limits of Choice

Inquiring into the relation between reproductive decision-making and the unexpected, this chapter claims that reproductive choices around disability bring out inherent paradoxes of choice in the face of uncertainty. Arguing that reproductive decisions around disability, like all reproductive decisions, must be left to the person carrying the child, this chapter also insists that reproductive choices attend to the role of chance and unexpected outcomes.

On What Matters/Not

Intertwining philosophical analysis with personal narrative on parenting a cognitively disabled child, this chapter provides an argument about the moral value of disabled individuals. Through an intimate case study of the author’s daughter Sesha, it argues that the flourishing of disabled persons should be assessed on the basis of those individuals’ own capacities and joys. It challenges the traditional philosophical emphasis on rationality as the defining faculty of human personhood, and indicates how concepts of justice, humanity, and dignity must be refashioned in light of what disability reveals about dependency, autonomy, and the desire for normalcy. Contra views that posit intrinsic rational capacities as central to personhood, this chapter defends a relational model of the self. From this it argues that cognitively disabled individuals require adequate care and resources to realize their capacities, which demands that communities recognize such individuals as worthy of moral parity.

Afterword: My Daughter’s Body—A Meditation on Soul

Sesha pushes my head to her neck. I find those sweet tender places at the crease of her neck, soft and warm. And she gurgles with pleasure. My daughter’s body. Its problems, its mystery, its soul. How very difficult it is to convey all that I experience when I am in her presence, the presence of that lovely, somewhat twisted, wheelchair-user body. It is through my daughter’s body that I come to know her....

How Not to Argue for Selective Reproductive Procedures

This chapter considers the moral status of various arguments in favor of reproductive selection, especially those that claim to accept the expressivist objection, especially that of the bioethicist Dan Brock. It argues that assuming that a disabled life is ceteris paribus a worse life is a poor way to make an argument for the permissibility of reproductive selection. Moreover arguing that we have a moral obligation to select against disability if we have a choice to select for a nondisabled child does not cohere with the acceptance of the expressivist argument. Instead it exemplifies the harmful and discriminatory attitudes toward people with disabilities that the expressivist argument objects to. Once again the author concludes that in the end, only the potential mother must make the choice. Whether or not the choice is a moral one depends on the woman’s motivation and intentions.

The New Normal and a Good Life

This chapter inquires into the relation between normalcy and the good life. Beginning from a parental desire for a “normal life” for one’s children, it asks in what this desire for normalcy consists, and whether normalcy is necessary for a good life. It argues that the desire for normalcy actually springs from love: one desires to be loved for the unique individual that one is, and normalcy provides a baseline against which one’s singularity can be perceived and appreciated. Attending to the pernicious aspects of normalcy, this chapter argues that the seeming impossibility of having a good life with a significant disability arises from an inadequate conception of normalcy as having a fixed set of norms. It calls for more capacious norms that include and support lives that depart from statistical norms.

Forever Small

This chapter analyzes the Ashley treatment (AT), named for a case where the parents of a six-year-old girl with severe cognitive impairment and global developmental deficits elected to have her undergo a procedure that involved growth attenuation (GA), along with removal of her breast buds, uterus and appendix. Acknowledging that AT is intended as care, Kittay argues that AT nevertheless fails to be ethical because it does not foster flourishing in critical ways. Kittay identifies four questionable presuppositions undergirding the arguments condoning AT: instrumentalization of the body; conflating apparent impairments with corresponding limitations to intellectual comprehension and emotional experience; positing severe cognitive disability and nonambulation as sufficient justification for these treatments even though they do nothing to cure or mitigate those conditions; and the notion that AT solves the problems of care of people with these conditions. Rather than pursue AT to handle the additional burden of care presented by nonabulating people with severe cognitive disability, we need social transformations that support the needs of severely disabled individuals and those who care for them.

An Ethics of Care

While care has been marginalized within much of the history of moral philosophy, care ethics insists that caring be understood as a form of moral conduct. Arguing that care is a normative rather than solely descriptive category, this chapter articulates care as a moral practice that, when performed in accordance with its regulative ideals, is morally good. This moral practice is unpacked via the normative concept of CARE, which includes care as labor, disposition, and virtue. This chapter articulates the features of what Kittay names an ETHICS OF CARE through its conceptions of moral agency, moral relations, moral deliberation, the particularity of some moral judgments, the aim of morality, and moral harm. This ETHICS OF CARE addresses the obligations and responsibilities that arise within asymmetrical relationships of situation and power between caregivers and those receiving care.

Dependency and Disability

Against the pervasive stigmatization of dependency, this chapter argues that dependence on others is crucial aspect of human life. In the realm of care, dependency can engender particular forms of relationality and closeness. While acknowledging the harms of imposed dependency on disabled people, Kittay insists that protecting disabled people’s demands for independence ought to go hand in hand with a refusal to stigmatize those disabled persons who cannot benefit from such claims. To this end, the chapter develops a normative concept of care, denoted as CARE, that respects the genuine needs and legitimate wants (the “cares”) of both those receiving and giving care. This care ethics attends to the needs and desires of people with disabilities while honoring the personhood and dignity of all involved in the relationships and work of care. Furthermore, it affirms that the rights of many individuals are realized only through caring work.

The Ethics of Prenatal Testing and Selection

This chapter focuses on the moral considerations involved in prenatal testing and selection. It addresses the expressivist objection from some segments of the disability community, which charges that prenatal testing for and selection against the birth of a disabled child perpetuates the view that a disabled life is not worth living. Highlighting important flaws in the expressivist objection, this chapter clarifies several views on the moral permissibility, impermissibility, or obligation to select for or against disabling traits, enhancing traits, or selection tout court. Against the expressivist view, it argues that it is possible to value disabled life, see disabled lives as worth living, and nevertheless engage in prenatal testing or selection. Such reproductive choices do not, on this view, have expressive force. Threaded through the argument is a dialogue between the author and her nondisabled son that considers the force of these moral arguments within a family that includes a disabled child.

A Meditation on Normalcy Inspired by Camus’s The Rebel

Camus writes: Art, at least, teaches us that man cannot be explained by history alone and that he also finds a reason for his existence in the order of nature. For him, the great god Pan is not dead. His most instinctive act of rebellion, while it affirms the value and the dignity common to all men, obstinately claims, so as to satisfy its hunger for unity, an integral part of the reality whose name is beauty. (...