Disability activists' redefinition of “disability” as a social, rather than a medical, problem attempts to reassign causality. We explicate the untenable implications of this approach and argue this definition is maleficent, unjust, and inconsistent. Thus, redefining disability as a socially caused phenomenon is, from a moral point of view, ill-advised.

In this paper, we offer a new account of disability. According to our account, some state of a person's biology or psychology is a disability if that state makes it more likely that a person's life will get worse, in terms of his or her own wellbeing, in a given set of social and environmental circumstances. Unlike the medical model of disability, our welfarist approach does not tie disability to deviation from normal species’ functioning, nor does it understand disability in (...) essentialist terms. Like the social model of disability, the welfarist approach sees disability as a harmful state that results from the interaction between a person's biology and psychology and his or her surrounding environment. However, unlike the social model, it denies that the harm associated with disability is entirely due to social prejudice or injustice. In this paper, we outline and clarify the welfarist approach, answer common objections and illustrate its usefulness in addressing a range of difficult ethical questions involving disability. (shrink)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

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. (shrink)

There is nothing more humbling to one’s inner moral compass than to realize that you do not initially know what is right or wrong! I found myself in just such a situation after reading the above case. Much has been written, both in the professional literature and the popular media, about the “Ashley Treatment” since Gunther and Diekema published their article in 2006. It is unclear if others in the United States or around the world have, to any significant degree, (...) adopted growth attenuation therapy and/or surgical intervention for children with severe neurological compromise, but the case quoted above suggests that hospital ethics committees may also be struggling with these decisions. An informal survey of pediatric endocrinologists, mentioned in a recent article on the topic, claims that many physicians are facing this dilemma as well. (shrink)

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as follows: thepotentiality principle, (...) whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

The enhancement debate in neuroscience and biomedical ethics tends to focus on the augmentation of certain capacities or functions: memory, learning, attention, and the like. Typically, the point of contention is whether these augmentative enhancements should be considered permissible for individuals with no particular “medical” disadvantage along any of the dimensions of interest. Less frequently addressed in the literature, however, is the fact that sometimes the _diminishment_ of a capacity or function, under the right set of circumstances, could plausibly contribute (...) to an individual's overall well-being: more is not always better, and sometimes less is more. Such cases may be especially likely, we suggest, when trade-offs in our modern environment have shifted since the environment of evolutionary adaptation. In this article, we introduce the notion of “diminishment as enhancement” and go on to defend a _welfarist_ conception of enhancement. We show how this conception resolves a number of definitional ambiguities in the enhancement literature, and we suggest that it can provide a useful framework for thinking about the use of emerging neurotechnologies to promote human flourishing. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)