Abstract

If no more children with disabilities were born, what, if anything, would be lost? Is it true, as has been suggested, that their lives are not worth living and not worth saving? We must ask ourselves what will become of disabled babies in an age of designer babies. In response to the suggestion that the lives of neurodevelopmentally disabled infants are not worth saving, this thesis presents a necessary re-conceptualization of best interests and quality of life assessments. As I show, a review of professional guidelines and literature reveals that disability is considered to be justification for optional intervention, and that these infants are viewed and treated differently. I argue that this disparity is rooted in philosophical ambiguity regarding the personhood of these infants, lack of relational contact, and an ethical system still wed to utilitarian principles. I present a relational care ethics approach as a viable and more truthful alternative to theories that define personhood based on requisite cognitive ability. I forge a view that does not deny the facts of medical diagnoses, yet displays humility in the face of human complexity and acknowledges that diagnoses do not tell the full story. A neo-Aristotelian view of flourishing strengthens care ethics by showing that flourishing is open to every human being, regardless of disability, and is not defined according to a normative, ideal human standard, but by a standard relative to the individual. Further, Aristotle's concept of phronesis harmonizes with Eva Kittay's description of the virtues of the caregiver and provides a model for how disability should be approached. Attentiveness to the model of a virtuous caregiver enables us to see disability not as justification for optional intervention, but an invitation to a relationship. Flourishing does not only happen in the absence of suffering, but alongside it as well. This view does not deny the presence of suffering, but invites us to find within or imbue it with meaning and transcendence to lead to its alleviation. Finally, I apply the original critique of current theory and practice and subsequent developed philosophical framework to best interests assessments. I conclude that in cases of neurodevelopmental disability, medical interventions should not be thought of as successful or unsuccessful in terms of their ability, to "cure" or "correct" disability itself, but should serve to facilitate the cognitively disabled infant's ability to function at full capacity, to flourish, whatever full capacity may mean for her.