This chapter contains sections titled: Introduction Conceptual Issues Decision Issues Conclusion References Further reading.

This paper argues that, with modification, Rawls's social contract theory can produce principles of distributive justice applying to the severely disabled. It is a response to critics who claim that Rawls's assumption that the parties in the original position represent fully cooperating citizens excludes the disabled from the social contract. I propose that this idealizing assumption should be dropped at the constitutional stage of the contract where the parties decide on a social minimum. Knowing that they might (...) not be fully capable of social cooperation, the parties will choose a social minimum that is as high and comprehensive as is compatible with the difference principle. This will ensure that the disabled have an adequate income. (shrink)

In Dependent Rational Animals, Alasdair MacIntyre attempts to ground the virtues in a biological account of humans. Drawing from this attempt, he also tries to answer the question of why we should care for the severely disabled. MacIntyre’s difficulty in answering this question begins with the fact that his communities of practices do not naturally include the severely disabled within their membership and care. In response to this difficulty, he provides four reasons for why we should (...) care for the severely disabled. I argue that three of these reasons are inadequate, and that the fourth is incomplete although it does point in a promising direction. I conclude that a more satisfactory answer requires a further extension of the central development from After Virtue to Dependent Rational Animals, and I draw from Wendell Berry, whose work MacIntyre admires, to provide an illuminating illustration of what such an answer might look like. (shrink)

The literature of bioethics suffers from two serious problems. (1) Most authors are unable to take seriously both the rights of the great apes and of severely disabled human infants. Rationalism—moral status rests on rational capacities—wrongly assigns a higher moral status to the great apes than to all severely disabled human infants with less rational capacities than the great apes. Anthropocentrism—moral status depends on membership in the human species—falsely grants all humans a higher moral status than (...) the great apes. Animalism—moral status is dependent on the ability to suffer—mistakenly equates the moral status of humans and most animals. (2) The concept person is widely used for justificatory purposes, but it seems that it cannot play such a role. It seems that it is either redundant or unable to play any justificatory role. I argue that we can solve the second problem by understanding person as a thick evaluative concept. This then enables us to justify assigning a higher moral status to the great apes than to simple animals: the great apes are persons. To solve the first problem, I argue that certain severely disabled infants have a higher moral status than the great apes because they are dependent upon human relationships for their well-being. Only very limited abilities are required for such relationships, and the question who is capable of them must be based on thick evaluative concepts. Thus, it turns out that to make progress in bioethics we must assign thick evaluative concepts a central role. (shrink)

The 2012 film The Sessions tells the story of a man with polio who loses his virginity by undergoing Surrogate Partner Therapy (SPT). In light of ensuing controversy surrounding the legal and moral status of SPT, this article uses Norman Daniels’ framework of fair equality of opportunity in health to argue that SPT is a legitimate form of treatment for sexual dysfunctions and should be evaluated alongside other such treatments. I begin by showing how sexual dysfunctions constitute deviations in normal (...) species functioning. I then show that sexual capacities are a matter of fair equality of opportunity because they affect the ability to cultivate the sexual intimacy that is crucial for forming a family and often necessary for maintaining a healthy one. Recognizing that some might object to SPT as a form of prostitution, I proceed by showing how the treatment might avoid some of the objections raised against prostitution, and conclude by affirming that societies committed to fair equality of opportunity in health should work to make SPT legal and safe. (shrink)

Martha Nussbaum has powerfully argued in Frontiers ofJustice and elsewhere that John Rawls’s sort of social-contract theory cannot usefully be deployed to deal with issues pertaining to justice for the disabled. To counter this claim, this article deploys Rawls’s sort of social-contract theory in order to deal with issues pertaining to justice for the disabled—or, since, as Nussbaum stresses, we all have some degree of disability—for the severely disabled. In this way, rather than questioning one by (...) one Nussbaum’s interpretive claims about Rawls’s view, one can simply see how the Rawlsian framework can work in application to this issue. Following Rawls’s lead, the paper utilizes the idealized “initial choice situation” as an analytic and comparative device for examining alternative principles of justice, developing three different interpretations of the initial choice situation that each correspond to a different set of principles that apply to people of all levels of disability. One of these sets of principles is a simple extension of Rawls’s, one is very close to what Nussbaum herself recommends, and the third is a kind of hybrid. In this way, it is shown not only that Rawls’s social-contract device can usefully be applied to these issues, but also that it is helpful for exploring the deep commitments underlying each of these competing sets of principles. (shrink)

Learning social studies content is important for all students, including those with severe disabilities. However, there is a limited amount of research that specifically examines teaching social studies to this population of students. Therefore, educators must look to research-based practices in other academic areas (e.g., English language arts) to determine new strategies to teach this important content. Using a multiple probe across participants design, three fifth-grade students with severe disabilities were taught to answer comprehension questions during read-alouds of social studies (...) text using a modified system of least prompts and graphic organizer. Findings indicate all students improved on the correct number of comprehension questions answered independently. Implications for practice and ideas for future research to teach social studies to students with severe disabilities are discussed. (shrink)

The human sensory system is continuously engaged in experiencing and interpreting every interaction with other living beings, objects, and the environment. The purpose of this article is to describe the impact limited opportunities for rich sensory experiences have on students with severe disabilities in two middle school classrooms situated in a public separate school in the southeastern USA. The study employed a postcritical ethnographic approach and grounded theory thematic analysis of fieldnotes gathered over a two-year period. Three major themes supported (...) by the data are presented and discussed in depth. They are: students are afforded limited sensory rich experiences, everyday routines make students passive recipients to school, and instructional approaches result in little interaction with extended periods of waiting. The implications of the findings for improved sensory experiences and possible future directions are described. (shrink)

I argue that Alasdair MacIntyre has important resources to provide in the debate over the moral status of severely disabled people. In contrast, Gregory Poore suggests that MacIntyre’s virtue theory cannot account for our responsibilities to severely disabled people. Given that MacIntyre bases his theory around community membership, this charge is made especially severe in the case of severely disabled strangers. I present an interpretation of MacIntyre that accounts for responsibilities to severely (...) class='Hi'>disabled strangers. I then argue that Poore is wrong to conclude that MacIntyre does not include severely disabled people in communities. (shrink)

The aim of this study was to generate knowledge about how parents who have been part of an ethical decision-making process concerning a son or daughter in a neonatal unit experience life with a severely disabled child. A descriptive study design was chosen using 30 hours of field observations and seven in-depth interviews, carried out over a period of five months with parents who had been faced with ethical decisions concerning their own children in a neonatal unit. Strauss (...) and Glaser’s constant comparative method was used for the analysis. The findings seem to indicate that these parents have an extremely tough life. Their relationships with their children are somewhat ambivalent. The children are very dependent on their parents, who in some ways both love and hate them. Too little rest and sleep and feeding the children are the most serious problems. The parents require respite facilities. The home can seem like a prison, from which it is impossible to escape. It is like having a baby who never grows up. (shrink)

This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of “best interests” but these have not yet been adopted. In particular, although courts have discounted assessment of “quality of life” as a legitimate component of determination of “best interests,” this remains a prominent component of clinical guidelines. In (...) addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective. (shrink)

Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality (...) of life is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

Rigorous attention has been paid to moral distress among healthcare professionals, largely in high-income settings. More obscure is the presence and impact of moral distress in contexts of chronic poverty and structural violence. Intercultural ethics research and dialogue can help reveal how the long-term presence of morally distressing conditions might influence the moral experience and agency of healthcare providers. This article discusses mixed-methods research at one nongovernmental social support agency and clinic in Rio de Janeiro, Brazil. Chronic levels of moral (...) distress and perceptions of moral harm among clinicians in this setting were both violent, following Nancy Scheper-Hughes’ use of that term, and a source of exceptional and innovative care. Rather than glossing over the moral variables of work in such desperate extremes, ethnography in these settings reveals novel skills and strategies for managing moral distress. (shrink)

Children like Baby G, born with complex chronic medical conditions that compromise function in the long term, are an increasing presence in tertiary-level neonatal intensive care units. The parents and health-care providers of these children are faced with profoundly difficult decisions. Whether severe congenital anomalies with poor prognosis are diagnosed antenatally or are discovered at the time of birth, the issues are vexing, and the impact decisions will have on everyone in the family is profound. What should such decisions be (...) based upon? What values and principles might guide the decision-making process? What moral justifications allow for pursuing.. (shrink)

Thousands of youth suffering from acquired brain injury or other early-life neurological disease live, mature, and learn with only limited communication and interaction with their world. Such cognitively capable children are ideal candidates for brain-computer interfaces. While BCI systems are rapidly evolving, a fundamental gap exists between technological innovators and the patients and families who stand to benefit. Forays into translating BCI systems to children in recent years have revealed that kids can learn to operate simple BCI with proficiency akin (...) to adults. BCI could bring significant boons to the lives of many children with severe physical impairment, supporting their complex physical and social needs. However, children have been neglected in BCI research and a collaborative BCI research community is required to unite and push pediatric BCI development forward. To this end, the pediatric BCI Canada collaborative network was formed, under a unified goal to cooperatively drive forward pediatric BCI innovation and impact. This article reflects on the topics and discussions raised in the foundational BCI-CAN meeting held in Toronto, ON, Canada in November 2019 and suggests the next steps required to see BCI impact the lives of children with severe neurological disease and their families. (shrink)

Social contract theories generally predicate the authority of rules that govern society on the idea that these rules are the product of a contractual agreement struck between members of society. These theories embody values, such as equality, reciprocity and rationality, that are highly prized within our culture. Yet a closer inspection reveals that these features exclude other important values, relations and even persons from the realm of contractual morality and justice, especially people with severe intellectual disabilities. Jonas-Sébastien Beaudry explores the (...) moral status of intellectually disabled people in social contract thought and argues that this tradition needs to be revisited to include the most vulnerable. Addressing this problem will have concrete repercussions in law and policy, because many issues that people with disabilities face are connected to deeply rooted assumptions about their status as full citizens or full members of our moral, political and legal communities. (shrink)

Consider: You can save either a human or a normal adult dog from a burning building (with no risk to yourself and at little cost), but not both. However, the human is a human with a severe intellectually disability (or, as we shall say, a “SID”). -/- Which one should you save? There is disagreement in the literature about which this issue. Two opposing camps exist, which we call “the intrinsic property camp ” and “the special relations camp.” Those in (...) the intrinsic property camp think that in most cases it is equally permissible to save either the dog or the human, and that in fact in some cases you should save the dog and not the human. Those in the special relations camp, by contrast, maintain that you should always save the human and not the dog. There is disagreement between these two camps about the answer to this question because there is disagreement between them about the moral significance of SIDs. Those in the intrinsic property camp believe that the moral value of a human with a SID is equal to (and in some cases less than) the moral value of a nonhuman animal such as a dog. (They thus believe that the value of a human with a SID is strictly less than the value of a normal adult human.) Those in the special relations camp believe that the value of a human with a SID is strictly higher than the value of a nonhuman animal. (But they are not thereby committed to, but may nonetheless believe, that a human with a SID has equal moral value to a normal adult human.) The questions we address in this chapter include: 1. Why do those in each camp hold the view that they do? 2. Which camp is right? (shrink)

I argue against Appel's recent proposal – in this JOURNAL – that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded – by thereby partially legalizing prostitution. I propose an alternative that does not need to pose a new positive human right; does not need public funding; does not need the legalization of prostitution; and that would offer a better experience to the severely (...) disabled: charitable non-profit organizations whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

The public discourse surrounding sex and severe disability over the past 40 years has largely focused on protecting vulnerable populations from abuse. However, health professionals and activists are increasingly recognising the inherent sexuality of disabled persons and attempting to find ways to accommodate their intimacy needs. This essay explores several ethical issues arising from such efforts.

Individuals with ‘severe’ cognitive disabilities are primarily discussed in philosophy and bioethics to determine their moral status. In this paper it is argued that theories of moral status have limited relevance to the unjust ways in which people with cognitive disabilities are routinely treated in the actual world, which largely concerns their relegation to an inferior social status. I discuss three possible relationships between moral and social status, demonstrating that determinate answers about the moral status of individuals with ‘severe’ cognitive (...) disabilities are neither necessary nor sufficient for defending the imperative that they be treated as our social equals. (shrink)

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's temperament. These generated (...) the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives. (shrink)

I argue that the right to sexual satisfaction of severely physically and mentally disabled people and elderly people who suffer from neurodegenerative diseases can be fulfilled by deploying sex robots; this would enable us to satisfy the sexual needs of many who cannot provide for their own sexual satisfaction; without at the same time violating anybody’s right to sexual self-determination. I don’t offer a full-blown moral justification of deploying sex robots in such cases, as not all morally relevant (...) concerns can be addressed here; rather, I put forward a plausible way of fulfilling acute sexual needs without thereby violating anybody’s sexual rights. (shrink)

IntroductionChildren with severe physical disabilities are denied their fundamental right to move, restricting their development, independence, and participation in life. Brain-computer interfaces (BCIs) could enable children with complex physical needs to access power mobility (PM) devices, which could help them move safely and independently. BCIs have been studied for PM control for adults but remain unexamined in children. In this study, we explored the feasibility of BCI-enabled PM control for children with severe physical disabilities, assessing BCI performance, standard PM skills (...) and tolerability of BCI.Materials and methodsPatient-oriented pilot trial. Eight children with quadriplegic cerebral palsy attended two sessions where they used a simple, commercial-grade BCI system to activate a PM trainer device. Performance was assessed through controlled activation trials (holding the PM device still or activating it upon verbal and visual cueing), and basic PM skills (driving time, number of activations, stopping) were assessed through distance trials. Setup and calibration times, headset tolerability, workload, and patient/caregiver experience were also evaluated.ResultsAll participants completed the study with favorable tolerability and no serious adverse events or technological challenges. Average control accuracy was 78.3 ± 12.1%, participants were more reliably able to activate (95.7 ± 11.3%) the device than hold still (62.1 ± 23.7%). Positive trends were observed between performance and prior BCI experience and age. Participants were able to drive the PM device continuously an average of 1.5 meters for 3.0 s. They were able to stop at a target 53.1 ± 23.3% of the time, with significant variability. Participants tolerated the headset well, experienced mild-to-moderate workload and setup/calibration times were found to be practical. Participants were proud of their performance and both participants and families were eager to participate in future power mobility sessions.DiscussionBCI-enabled PM access appears feasible in disabled children based on evaluations of performance, tolerability, workload, and setup/calibration. Performance was comparable to existing pediatric BCI literature and surpasses established cut-off thresholds (70%) of “effective” BCI use. Participants exhibited PM skills that would categorize them as “emerging operational learners.” Continued exploration of BCI-enabled PM for children with severe physical disabilities is justified. (shrink)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in (...) a way that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

This article is the result of a mutual interest in the radical philosophical dialogue discussed by Martin Buber. The radical dialogue is rooted in western European values of humanism, values that are challenged because they exclude women, people with disabilities, non-western, indigenous people and sexual minorities. With our basis in radical dialogue we are discussing flaws within the very concept of dialogue, how dialogue is challenged in encounters between people with severe disabilities and their helpers, and we are proposing a (...) new interpretation of dialogue in a posthuman area. To illuminate what might be at stake in relations where power is clearly imbalanced we use Pierre Bourdieus theory of the gift when asking ourselves: “How can we understand dialogue when there apparently is one dominant giver and one receiver unable to return the gift?” Discussing this question, we draw on Rosi Braidotti and her Posthuman Critical Theory to see if we can find new grounds to build dialogue on. (shrink)

This paper expresses wonder about how bodies in motion can lead towards an understanding of lived meaning in silent lifeworlds. In such lifeworlds, expressions are without words, pre-symbolic, and thus embodied. To address the wonder, phenomenological philosophy and phenomenological methodology were employed to frame an approach that acknowledges lives with disabilities as qualitatively different from, and yet not inferior to, nor less imbued with meaning than, lives without.The paper focuses on spatiality as decisive in determining possibilities for persons to express (...) their perspectives through a wide range of movements. Movements take place in the continuum between the spatiality of positions as objective bodily sensations and the spatiality of situations as embodied interactions with others and the world. Thus, in order to access the perspectives of students with severe and multiple disabilities, transitions between and movements within different spaces are examined.Approaching an educational everyday life where students are restricted in the possibilities available to them for moving in and out of spaces, the study reported points to the importance of recognizing the relationship between subjective movements and the spaces enveloping them as what creates a spatiality that is meaningful to the subject. It is accordingly suggested that choosing which spaces to include in educational contexts are formative choices that express a view of humanity. The paper also emphasizes the importance of recognizing temporality as a pedagogical resource when detecting and acting upon students’ changing expressions. (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)

The increasing focus on disability rights—as found, for instance, in the U.N. Convention on the Rights of Persons with Disabilities —challenges philosophical imaginaries. This article broadens the philosophical imaginary of freedom by exploring the relation of dependence, independence, and interdependence in the lives of people with disabilities. It argues that traditional concepts of freedom are rather insensitive to difference within humanity, and that the lives of people with severe disabilities challenge philosophers to argue and conceptualize freedom not only as independence (...) and interdependence but also as dependence. After tracing this need through a Hegelian understanding, via Julia Kristeva's work on disability, and finally the CRPD, it concludes that a unified solution might not be possible. Hence, it argues that disability issues necessitate philosophical modesty. (shrink)

Pandemics such as COVID-19 place everyone at risk, but certain kinds of risk are differentially severe for groups already made vulnerable by pre-existing forms of social injustice and discrimination. For people with disability, persisting and ubiquitous disablism is played out in a variety of ways in clinical and public health contexts. This paper examines the impact of disablism on pandemic triage guidance for allocation of critical care. It identifies three underlying disablist assumptions about disability and health status, quality of life, (...) and social utility, that unjustly and potentially catastrophically disadvantage people with disability in COVID-19 and other global health emergencies. (shrink)

Often advocates for persons with disabilities are resistant to what might appear to be the banal truism that, at bottom, disability is a decrement in health. Disability advocates have long objected to the “medicalization” of disability, when that means focusing entirely on a person’s underlying impairments and ignoring all of the manifold obstacles in his or her environment — e.g., physical, human-built, attitudinal, social, political, and cultural — that makes living with those impairments at least disadvantageous and socially devalued. Over-medicalization (...) is another and well understood problem that people with disabilities are justifiably concerned about. Yet it is somewhat of a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told, that their impairment is a health problem. Surely, people with disabilities are unhealthy, by virtue of their impairments and to the degree according to the severity of those impairments. How could it be otherwise? (shrink)

This chapter contains sections titled: Introduction Animals Fetuses Cognitive Enhancement Supra‐persons Acknowledgments References.

This paper argues against Appel's recent proposal—in this journal—that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded—by thereby partially legalising prostitution. An alternative is proposed that does not need to pose a new positive human right; does not need public funding; does not need the legalisation of prostitution; and that would offer a better experience to the severely disabled: charitable non-profit organisations (...) whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

In this chapter, we critique a concept of resilience that has emerged from contemporary positive psychology and its application to health education. We argue that the present popularity of “resilience” as a strategy for managing mental health discourages educational institutions from providing students with the mental health services they need. Using the tools of American pragmatism, especially the work of John Dewey, we criticize the paradigm of resilience and identify several concrete reformulations of disability studies which would make concrete differences (...) in the lives of those with mental disability. (shrink)