Disability has been a topic of heightened philosophical interest in the last 30 years. Disability theory has enriched a broad range of sub-specializations in philosophy. The call for papers for this issue welcomed papers addressing questions on normalcy, medical ethics, public health, philosophy of education, aesthetics, philosophy of sport, philosophy of religion, and theories of knowledge. This issue of Essays in Philosophy includes nine essays that approach the philosophy of disability in three distinct ways: The first set of three essays (...) provide a careful analysis of John Rawls, and the application of his work in ethics and justice to societies in which persons with disabilities, especially cognitive disabilities, can take active part in the processes of civil society. The second set of three essays branch out into continental philosophy, and are especially engaged with issues of community membership, communication, translation, and hermeneutics. The third set of three essays address disability specifically through the arts and aesthetics; asking questions on the portrayal of disabled persons in the arts and its implications for normalcy, sexuality, beauty, and the sublime. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

This article articulates and defends a dissolution of the so-called repugnant conclusion, which focuses on the notion of life worth living figuring both in Parfit's formulation of the repugnant conclusion and in most responses to such a conclusion. The proposed dissolution demonstrates that the notion of life worth living is plagued by multiple ambiguities and that these ambiguities, in turn, hamper meaningful debate about both the issue of whether the repugnant conclusion can be avoided and the issue of whether the (...) repugnant conclusion is actually repugnant. This result does not exclude that some modified versions of the repugnant conclusion may yield valuable insights about the value of populations and the tenability of different axiological/ethical theories. Still, if the proposed dissolution is correct, then the repugnant conclusion rests on an ill-defined notion and we lack the information required to assess the merits of the repugnant conclusion. (shrink)

Neuroimaging studies of brain-damaged patients diagnosed as in the vegetative state suggest that the patients might be conscious. This might seem to raise no new ethical questions given that in related disputes both sides agree that evidence for consciousness gives strong reason to preserve life. We question this assumption. We clarify the widely held but obscure principle that consciousness is morally significant. It is hard to apply this principle to difficult cases given that philosophers of mind distinguish between a range (...) of notions of consciousness and that is unclear which of these is assumed by the principle. We suggest that the morally relevant notion is that of phenomenal consciousness and then use our analysis to interpret cases of brain damage. We argue that enjoyment of consciousness might actually give stronger moral reasons not to preserve a patient's life and, indeed, that these might be stronger when patients retain significant cognitive function. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, and that they should (...) be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

It seems that we should want to avoid becoming intellectually disabled. It is common for philosophers to infer from this that those of us without intellectual disabilities are intrinsically better off than individuals with intellectual disabilities, and that there are consequently stronger moral reasons for others to preserve our lives than to preserve the lives of intellectually disabled individuals. In this article, I argue against this inference from what states we should prefer for ourselves to how much moral reason others (...) have to maintain these states on our behalves. I argue that there is an important sense in which an outcome contributes to our well-being to a certain degree, namely the extent to which others should want it out of care for us, which plays a central role in determining the moral priority of ensuring the outcome for us over ensuring distinct outcomes for others. But an outcome's contribution to our well-being in this sense can come apart from the extent to which we should prefer it for ourselves. (shrink)

In the context of critically ill children, Baines contended that the best interests test was neither objective nor coherent, and thus of little applicability in making end-of-life decisions. In reply, Bridgeman attempted to refute these claims through legal analysis and contended that the doctrine allowed for responsive, fact-specific, context-sensitive and prudential reasoning. This paper is a response to Bridgeman, and argues that an examination of case law reveals the subjective and value-laden nature of the test. Courts must make decisions in (...) contested cases, but there is no reason to hold that a judge can divine the best interests of a critically ill child better than either parents or medical staff. This paper analyses a number of cases where judicial decisions appear at odds with the child's best interests, and argues that as the outcome depends upon the value system of the decision-maker the test is unhelpful in contested end-of-life cases. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has (...) seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? Third, if the life of (...) a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness. (shrink)

Most legal analyses of selective nontreatment of seriously ill children centre on the question of whether it is in a child’s best interests to be kept alive in the face of extreme suffering and/or an intolerable quality of life. Courts have resisted any direct confrontation with the question of whether the child’s death is in his or her best interests. Nevertheless, representations of death may have an important role to play in this field of jurisprudence. The prevailing philosophy is to (...) configure death as a release from a futile or painful existence and/or as a dignified end in an objectively hopeless situation. However, there can be disagreement about the meaning of death in these settings. Some parents object that death would be premature or that it represents a culpable neglect of their child. A closer examination of these discordant interpretations allows for a better comprehension of the cultural understandings that underscore clinical and legal accounts of death following end-of-life decisions. (shrink)

This article argues for the elimination of the concept of life worth living from philosophical vocabulary on three complementary grounds. First, the basic components of this concept suffer from multiple ambiguities, which hamper attempts to ground informative evaluative and classificatory judgments about the worth of life. Second, the criteria proposed to track the extension of the concept of life worth living rest on unsupported axiological assumptions and fail to identify precise and plausible referents for this concept. And third, the concept (...) of life worth living is not shown to serve any major evaluative or classificatory purpose besides those served by already available axiological concepts. By eliminating the concept of life worth living, philosophers will free themselves of the task of addressing ill-posed axiological questions and ground reflection about the worth of life on more rigorous conceptual foundations. (shrink)

Background: Lay persons’ judgements of the acceptability of the not uncommon practice of ending the life of a damaged neonate have not been studied. Methods: A convenience sample of 1635 lay people in France rated how acceptable it would be for a physician to end a neonate’s life—by withholding care, withdrawing care, or active euthanasia—in 54 scenarios in which the neonate was diagnosed either with perinatal asphyxia or a genetic abnormality. The scenarios were all combinations of four factors: three levels (...) of maturity or immaturity, three levels of severity of the health problem, three levels of parents’ preference concerning prolonging care and two levels of decision-making (with or without consulting the other caregivers). Analyses: Analyses of variance of the participants’ responses were performed to determine the importance of each factor; the interactions among factors, with methods of ending life and with other patient characteristics; and the differences between asphyxia and genetic abnormality. A cluster analysis was performed to look for groups with different patterns of responses. Results: Lay people assigned most importance to the parents’ request and to the severity of the problem. Except for a small group (12%) always opposed to ending life, they used a simple additive-type rule in integrating the information. Implications: Most of this sample of French lay people are not categorically for or against ending the life of a damaged neonate, but judge its degree of acceptability by adding up those factors that seem most salient to them. (shrink)

This article provides an understanding and defence of ‘best interests’. The analysis is performed in the context of, and is informed by, English law. The understanding that develops allows for differences in values, and is thus argued to be appropriate in a pluralist liberal system. When understood properly, it is argued, best interests provides the best means of decision-making for people deemed incompetent to decide for themselves. It is accepted that some commentators are cynical of best interests in practice. Following (...) an assessment of some of their principal concerns, it is suggested that best interests in fact provides a construct that is both defensible and desirable. (shrink)

IntroductionThanks to Dominic Wilkinson, a formidable clinician-philosopher, for his considered response, and especially for highlighting my work's translatability outside of an theological context. In part, because bioethics’ pioneers were theologians, the discipline misses something important when theology is not an integral part of the conversation. I do not have the space to do an in-depth response,i so the best I can do is use some assertions to gesture at a few key points.Relational anthropology and the best interests of the patientWilkinson (...) spends significant time critiquing my claim that the Social Quality of Life Model is consistent with a healthcare provider acting in the best interest of her patient. And though he notes that my general argument goes through without this claim, the idea that clinicians should always act in the best interests of their patients is so commonly held that this topic deserves sustained attention. Wilkinson highlights my relational anthropology as the foundation of my claims about the sQOL, but this anthropology is not founded, as he suggests, on a crude naturalism. Ultimately, it is founded on the first principle that human beings are made in the image of a Triune God who is intrinsically relational. Many different kinds of thinkers have a similar anthropology. We may see the interconnectedness and social nature of human beings as empirical evidence which supports our position, but it is not sufficient to produce the anthropology itself without the naturalistic fallacy Wilkinson rightly mentions.Much of Wilkinson's disagreement comes down to anthropological first principles. He appears to have an enlightenment view which begins with the person, an individual subject of benefits and burdens. Someone with …. (shrink)

Birth asphyxia is the most common single cause of death in term newborn infants. The majority of deaths in developed countries follow decisions to withdraw intensive care. Recent technological advances, particularly the use of magnetic resonance imaging (MRI) of the brain, may affect the process of prognostication and decision-making. There is little existing evidence about how prognosis is determined in newborn infants and how this relates to treatment withdrawal decisions.An exploratory qualitative study was performed using in-depth semi-structured interviews with a (...) sample of ten neonatologists from tertiary intensive care units in the UK. Participants were purposively selected to ensure a range of experience and type of unit. They were asked about the process of prognostication for infants with birth asphyxia and decisions about treatment withdrawal. Interviews were transcribed and thematically analysed.MRI played a significant role in decision-making about life-sustaining treatment for a number of clinicians. Clinicians did not identify particular ethical concerns related to MRI, though wider discussion revealed issues relating to uncertainty around predictions, the timing of prognostication and decision-making, and difficulty in predicting quality of life. (shrink)

The extremely well-known holiday television special Rudolph the Red Nosed Reindeer is deconstructed to expose an underlying philosophical paradigm towards people, especially children, with disabilities that is mechanistic and utilitarian. This paradigm includes a static and over-determined view of any disability a person may have, and can be erroneously supported by a philosophy of “radical freedom.” Examples of this philosophy of disability as applied to the K-12 realm of special education are also provided, showing how the lessons learned from the (...) children’s movie are mirrored in the static conceptualization of the notion of disability in the general society and educational system. (shrink)