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)

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

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)

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)

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)

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of (...) disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. (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)

Children with complex medical conditions including those with severe intellectual disability are living longer. For some, support with medical technology such as Long-Term Ventilation can prolong their lives further. Such technological supports can have significant implications for the child and her family and consume considerable resources though they can also offer real benefits. Sometimes clinicians question whether children with very severe cognitive impairments should have their life prolonged by technology, though they would be prepared to provide the same (...) treatment in equivalent cases without cognitive disability. We describe and analyse four ways in which this view might be justified. Although it could be claimed that children with severe cognitive disability have lives that are not worth living, in most cases this view can and should be rejected. However, the burdens of life-prolonging technology may outweigh the benefits of such treatment either in the present or in the future. Consequently it might not be in their interests to provide such technology, or to ensure that it is provided as part of a time-limited trial. We also consider circumstances where medical technology could offer modest benefits to an individual, but resources are scarce. In the face of resource imitation, treatment may be prioritised to children who stand to benefit the most. This may in some circumstances, justify selectively withholding treatment from some medically complex children. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continueorwithdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (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)

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction (...) to HEC Forum’s special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate those with genetic (...) defects.1However, is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue (...) in this way have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (shrink)

This paper re-envisions the personhood of severely disabled children, who are often excluded from the category of human beings in the academic literature due to their perceived lack of mental faculties, based on Japanese philosopher Watsuji Tetsuro’s concept of human beings. It begins with Carl Elliott’s claim that personhood should be used as a thick ethical concept. This concept has two features. First, it represents a fusion of fact and value. Second, it is embedded in our rich (...) and culturally specific forms of life. This paper suggests that Watsuji’s concept of ningen also has these features. Watsuji criticizes how Western ethicists take individual consciousness or will as their starting point for determining personhood. Instead, he argues that neither a subject nor a community exists as an entity in itself, but that the relationality between them is essential to their identity and that our communication is embedded within rich and social contexts. Through his etymological study of Japanese word ari, Watsuji points out that in making statements, one both discloses the world and becomes aware of the attitude one should take toward other beings. Some commentators, such as Sakabe Megumi, have suggested that such self-awareness entails the transformation of our sense of relationality. This paper leverages Watsuji’s concept of ningen to re-envision the relationship between caregivers and severely disabled children as relationality-based and therefore open to complex and rich communication. (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)

Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or (...) disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability. (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)

In recent years there has been increased focus on supporting the safety and wellbeing of children and young people with disability. This paper reports on a study that asked children and young people with disability and adults who work with them about practices that support their wellbeing and safety, including barriers and enablers to ethical practice. We used the theory of practice architectures to unpack the practices. Findings point to a range of practices that both young people and (...) adults regarded as important in creating the cultural conditions for young people to feel happy, safe and well, albeit placing different emphases on particular practices. Several tensions within and between these practices and the evolving requirements of disability and safeguarding policy environments were also apparent. While often not well articulated, the inherent tensions have implications when considering what children and young people need, particularly those with higher support needs. Findings suggest closer attention needs to be given to the intersection between individual and systemic factors in shaping ethical practice aimed at supporting the wellbeing and safety of children and young people with disability. (shrink)

Executive functions measures of 27 asthmatic children, with general learning difficulties, were tested by using the Wisconsin card sorting test (WCST), and were compared to the performances of 30 non-asthmatic children with general learning difficulties. The results revealed that the asthmatic group has poor performance through all the WCST psychometric parameters and especially the perseverative errors one. The results were discussed in light of the postulation that poor executive functions could be associated with the learning difficulties of asthmatic (...) children. Neurophysiological framework has been suggested to explain the etiology of poor executive functions among children with moderate into severe asthma. (shrink)

From the standpoint of disability advocacy, further exploration of the concept of well-being stands to be availing. The notion that “welfarism” about disability, which Julian Savulescu and Guy Kahane debuted, qualifies as helpful is encouraged by their claim that welfarism shares important commitments with that advocacy. As becomes clear when they apply their welfarist frame to procreative decisions, endorsing welfarism would, in fact, sharply undermine it. Savulescu and Kahane's Principle of Procreative Beneficence—which reflects transhumanism, or advocacy of radical bioenhancement—morally requires (...) parents to choose the child who will, in all probability, have “the best life.” Assuming the emergence of potent biotechnologies, procreative decision-making would be highly standardized, for prospective parents would be morally obliged to maximize select capacities, including intelligence, self-control, and hedonic set-point, in their children. Welfarism, applied to reproduction, is staunchly objectivist about what course is incumbent on decision-makers, giving no credence to first-personal values, aspirations, and experiences. Though this dismissal of individual perspectives applies to everyone, its implications for disability advocacy are especially severe. With that advocacy in view, greater attention to “well-being” should, therefore, be severed from the welfarism of Savulescu and Kahane. (shrink)

Gender seems to be everywhere in the norms governing our social world: from how to be a good friend and how to walk, to children’s clothes. It is not surprising then that a difficulty in identifying someone’s gender is often a source of discomfort and even anxiety. Numerous theorists, including Judith Butler and Charlotte Witt, have noted that gender is unlike other important social differences, such as professional occupation or religious affiliation. It has a special centrality, ubiquity and importance (...) in social practices. This observation moves us away from the classic philosophical question ‘what is gender?’ towards a more underappreciated one: ‘what is the role of gender’? To answer this question, I introduce the notion of social standing, which refers to our ability to enter into social relations. Social standing distinctions are an important feature of human societies. However, our existing philosophical tools do not adequately capture this notion: it is neither a moral distinction, nor is it reducible to hierarchy. I offer a conception of our entry into social relations as always conditioned by various shared representational assumptions about social subjects. When individuals are anomalous with respect to those assumptions, their social standing is in doubt. This explains important forms of uncommon and peculiar treatment across societies. I argue that forms of social devaluation on the basis of severe and visible disability in our society are central examples of diminished social standing. In our social context, being hard to recognize through the matrix of gender makes one representationally anomalous and imperils one’s social standing. Gender plays a fundamental role because gender legibility is a precondition for full social standing. Gender norms parallel ‘ability norms’ in this respect, linking notions of normalcy in scholarship on gender and in scholarship on disability. Social standing also explains two key phenomena about gender. Firstly, it tells us why our social practices and norms are pervasively gendered. Given the performative and relational nature of gendered positions, this is necessary for constant gender legibility. Secondly, social standing recognition accounts for social anxiety phenomena around gender ambiguity. These phenomena are reactions to anomaly as a threat to our social systems of meaning. In the final part of my dissertation, I consider some political consequences of my view. Understanding this special role of gender allows us to identify a distinct type of backlash to feminist social change that is particularly insidious. It is not driven by the hierarchical investments of the most gender-privileged, but rather by our collective investment in gender as a system of social coordination. I explore 2000s ‘raunch feminism’ to argue for this hypothesis. Gender’s role as a conditioning parameter of social standing puts systematic pressure on all would-be social subjects to be gender legible. This requires that individuals position themselves in recognizably gendered ways within social practices. But when gender differentiation is eroded, this positioning becomes tricky. This gives rise to a disorientation I call ‘meaning vertigo’. Meaning vertigo prompts attempts at reinstating a clear gendered system. In the process, gender equality suffers a serious set-back. To make substantial feminist progress, we must unseat gender from its central position in social domains like sexuality. I suggest that the best way to do this may be by foregrounding other aspects of social identity as systems of social coordination, instead of working on gender directly. (shrink)

This article presents a novel set of ten play scenarios for robot-assisted play for children with special needs. This set of scenarios is one of the key outcomes of the IROMEC project that investigated how robotic toys can become social mediators, encouraging children with special needs to discover a range of play styles, from solitary to collaborative play. The target user groups in the project were children with Mild Mental Retardation,1 children with Severe Motor Impairment and (...) children with Autism. The play scenarios were developed against specific educational and therapeutic objectives that were discussed with panels of experts in various countries, during several user panel meetings for each of the above mentioned target user groups. These objectives were classified with reference to the ICF-CY, the International Classification of Functioning – version for Children and Youth. The article presents a detailed description of the play scenarios, each with its relevant educational and therapeutic objectives in five key developmental areas. While the play scenarios described in this paper originally were developed for and tested with the above user groups and with the IROMEC robot, the play scenarios can potentially be applied to other user groups and to a wide range of other applications involving human-robot interaction using different robotic toys. Keywords: human-robot interaction; assistive technology; play scenarios; autism; mild mental retardation; sever motor impairment; assisted play. (shrink)

The health of newborns has always been subject to the natural lottery. When in the past a severely disabled baby was born, nature provided the “solution,” and the child did not survive. Medical technology has brought about a change; fetuses who would have died during pregnancy or newborns who once would have had little chance to survive are now kept alive. Although these technological advances do benefit many children, the dark side is that more severely handicapped (...) babies are surviving.When a severely disabled baby is born, all persons concerned are faced with emotional difficulties as well as moral and legal dilemmas. Questions that arise include whether it is acceptable, morally and legally, to allow the severely handicapped newborn to die by forgoing treatment or by direct intervention. (shrink)

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (shrink)

The ‘Ashley treatment’ has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. (...) I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life, I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity, I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face. (shrink)

This article is written in response to the idea that selective termination may be eugenic. It points out that a mixture of motives and goals may inform screening programmes and selective termination for fetal abnormality without the intention being “eugenic”. The paper locates modern genetics within the tradition of humanist medicine by suggesting that parents who choose to terminate a pregnancy because of fetal abnormalities are not making moral judgments about those who are living with these abnormalities already. Rather they (...) are making judgments about their own lives and the lives of their children in relation to this genetic disorder. It concludes by introducing several caveats about the counselling that parents receive after the results of the testing and suggests that counselling inevitably contains a directive element because of the nature of the information covered. (shrink)

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how (...) the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children. (shrink)

: This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We (...) explore whether that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption. (shrink)

Definition of the problem Compassionate use is the use of unapproved drugs in groups of patients suffering from a disease that, in the absence of an alternative treatment option, is life-threatening or leads to severe disability. Physicians are not in charge because access to the drug is only granted by pharmaceutical companies, which comes along with many ethical issues. Launched in 2020, the program of Onasemnogenum abeparvovecum against spinal muscular atrophy in children reached a new dimension. The intent of (...) this drug is to stop the progression of the disease with just a single dose, but the company limited the doses in the program to only 100. The global allocation was by lottery, which was considered a novelty in compassionate use history and therefore widely criticized. This paper investigates alternative allocation principles. Arguments Each possible principle is accompanied by many aspects that need to be considered with regard to urgency and global distribution. This makes some principles like first-come-first-served seem negligible. Remaining principles are ordered hierarchically to derive an algorithm that can represent an alternative to a lottery. A combination of willingness to participate in research, urgency, and likelihood of success (relative to the availability of supportive treatment options) may be considered in similar cases in future global compassionate use programs with children. Conclusion Since universal algorithms are difficult to define, allocation criteria should always be discussed by an independent panel of experts. Both the constitution of such a panel and its mandatory consultation are necessary in order to decrease the burden for all those involved and to prevent arbitrariness. (shrink)

Decision-making regarding treatment for newborns with disabilities in resource-poor settings is a difficult process that can put parents and caregivers in conflict. Despite several guidelines that have helped to clarify some of the medical decision-making in Ghana, there is still no clear consensus on the specific moral criteria to be used. This article presents the case of a mother who expressed her wish that her child with Down syndrome should not have been resuscitated at birth. It explores the ethical issues (...) at stake in both her misgivings about the resuscitation and her unwillingness to consider surgical repair of an atrioventricular (AV) canal defect. Knowing that children born with Down syndrome are able to pursue life’s goals, should our treatment of complete AV canal defect in such children be considered morally obligatory, even in resource-poor settings like Ghana? (shrink)

A central question in contemporary ethics and political philosophy concerns which entities have moral status. In this article, I provide a detailed analysis of the view that moral status comes in degrees. I argue that degrees of moral status can be specified along two dimensions: (i) the weight of the reason to protect an entity’s morally significant rights and interests; and/or (ii) the rights and interests that are considered morally significant. And I explore some of the complexities that arise when (...) we link degrees of moral status to the weight of reasons to protect bundles and/or the content and size of these bundles, in particular regarding the attribution of moral status to nonparadigmatic entities (e.g. people with severe cognitive disabilities, children, embryos and foetuses, robots, non-human animals, ecosystems, and rivers). (shrink)

Children with developmental language disorder (DLD) have significant deficits in language ability that cannot be attributed to neurological damage, hearing impairment, or intellectual disability. The symptoms displayed by children with DLD differ across languages. In English, DLD is often marked by severe difficulties acquiring verb inflection. Such difficulties are less apparent in languages with rich verb morphology like Spanish and Italian. Here we show how these differential profiles can be understood in terms of an interaction between properties of (...) the input language, and the child's ability to learn predictive relations between linguistic elements that are separated within a sentence. We apply a simple associative learning model to sequential English and Spanish stimuli and show how the model's ability to associate cues occurring earlier in time with later outcomes affects the acquisition of verb inflection in English more than in Spanish. We relate this to the high frequency of the English bare form (which acts as a default) and the English process of question formation, which means that (unlike in Spanish) bare forms frequently occur in third‐person singular contexts. Finally, we hypothesize that the pro‐drop nature of Spanish makes it easier to associate person and number cues with the verb inflection than in English. Since the factors that conspire to make English verb inflection particularly challenging for learners with weak sequential learning abilities are much reduced or absent in Spanish, this provides an explanation for why learning Spanish verb inflection is relatively unaffected in children with DLD. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Propaedeutic to Walter BenjaminDavid Socher (bio)I took the picture—the Marines took Iwo Jima.—Joe Rosenthal (1912-2006)The Emerson College Web site on Walter Benjamin's essay The Work of Art in an Age of Mechanical Reproduction1 nicely animates some ideas of the essay. One such idea is the following: To an ever greater degree the work of art reproduced becomes the work of art designed for reproducibility. When Benjamin wrote this (...) essay and this maxim, Norman Rockwell had been illustrating magazine covers for both Boy's Life and the Saturday Evening Post for several years. Rockwell, who also made paintings for advertisements, said he didn't "want to paint for the few who can see a canvas in a museum." He wanted his "pictures to be published," exemplifying Benjamin's point.2 Wood engravings have been around for a thousand years and coins with portraits for two thousand. I don't mention these old examples to dispute Benjamin's point—certainly to an ever-greater degree the modern age designs for reproducibility. And Benjamin himself at the outset mentions the stampings, coins, and terra cottas of the Greeks as ancient cases of reproduction of a work of art. I merely intend to highlight the distinction between creating a print and painting a painting or drawing a drawing. In the latter cases the artist's goal is to produce one particular physical surface. We often imbue this surface with what Benjamin called an aura.3 Collectors of Rockwell Post covers don't have Rockwell's auras,4 and even less so those who have and hang reproductions of such covers. The making of prints has its own cachet, however. Although he is far from a typical printmaker, M. C. Escher here expresses a thought applicable to all printmakers: "The printmaker has [End Page 1] something of the minstrel spirit; he sings, and in every print … he repeats his song over and over again."5As is usual with such illustrations, Rockwell's paintings were put on magazine covers by photographic processes. Rockwell, of course, is not a photographer. His name will not be included in the history of photography. Why is it even worth stating such more-than-obvious observations? Because Benjamin seems to me to be mixed up about photography and the mix-up pervades his essay, even including his very title. Getting clear about exactly what photography is will help untangle things. Therefore, before turning to Benjamin's text, allow me a few words on photography.It is hard to overstate the importance of photography. About his own parents, whom he had never seen, Dickens's Pip says, he "never saw any likeness of either of them (for their days were long before the days of photographs)."6 Many school textbooks feature photos of children in a classroom, but often these are staged photos not actually taken in a classroom. At least one textbook publisher keeps props, including a wheelchair to take photos of "Able bodied children selected through modeling agencies [posing] in the wheelchair."7 Well, it's hard to get disabled children to serve as models, and in this way the publisher meets his disability quota. In such a case the photo is not doctored. It does picture the event in front of the camera, although unknown to the student, the picture is staged and the pictured student is neither in a classroom, nor disabled. This is a small deception; it is, however, a greater deception than is normal for, say, clothing catalogues. In such a catalogue all know that the model photographed is not actually skiing or chopping wood, although the model is so pictured. In the textbook an able-bodied child is presented as a disabled one, however, no direct falsehoods are being taught and no picture is falsely captioned. On the other hand, when a news agency doctors, falsely captions, or stages a picture, the deception is great.Newspapermen and newspaperwomen know well that photo-ops and managed news are cases where the tail wags the dog inasmuch as the event itself was only created for the sake of the picture. Somewhat similarly, staged wedding photos and other... (shrink)

The birth of a child with hearing impairment imposes more parentaldemands than having a child without a disability. Parents have little concernabout the holistic growth and development of their children with hearingdisability. This study aspires to delineate the parental practice and experience indealing with behavioural problems of their children with hearing-impairmentsin a Special School in Kano State, Nigeria. This study employed a qualitativecase study design in which interviews and observation were used to collectthe data. Purposeful sampling was utilised (...) in selecting three fathers and threemothers of children with hearing impairment. Data was recorded, transcribedand thematically analysed in which categories were identified and generated.The findings accentuated several major themes and categories of parentalpractice and their experiences, which have to do with counselling the childrenwith hearing impairment. Parental experience includes the judgment of othersin the family and based on the findings, the researchers provide discernments toparents, their children with hearing impairment, and the immediate communitywhere such children live. (shrink)

Much of the literature on basic equality has focused on the question of what grounds the equal moral status of persons, typically understood as fully competent adults. However, less has been said about what justifies the equal moral status of those human beings who do not hold a wide range of sophisticated cognitive capacities, such as severely cognitively disabled human beings and children. This chapter contributes to filling this gap by developing a novel theory of the basis (...) of children’s moral equality. Specifically, I argue that children’s moral equality is entailed by a commitment to a kind of respect which requires providing children with those social conditions that foster their development into well-adjusted adults who hold a proper and stable capacity for moral personality. This is because unequal consideration and treatment precludes, or at least is a significant obstacle to, the provision of some goods that are crucial to the cultivation of a proper and stable capacity for moral personality. Children’s moral equality, then, is a constitutive requirement of what is owed to them qua moral status-holders. (shrink)

Down syndrome (DS) impacts several brain regions including the hippocampus and surrounding structures that have responsibility for important aspects of navigation and wayfinding. Hence it is reasonable to expect that DS may result in a reduced ability to engage in these skills. Two experiments are reported that evaluated route-learning of youth with DS, youth with intellectual disability (ID) and not DS, and typically developing (TD) children matched on mental age (MA). In both experiments, participants learned routes with eight choice (...) point presented via computer. Several objects were placed along the route that could be used as landmarks. Participants navigated the route once with turn indicators pointing the way and then retraced the route without them. In Experiment 1 we found that the TD children and ID participants performed very similarly. They learned the route in the same number of attempts, committed the same number of errors while learning the route, and recalled approximately the same number of landmarks. The participants with DS performed significantly worse on both measures of navigation (attempts and errors) and also recalled significantly fewer landmarks. In Experiment 2, we attempted to reduce TD and ID vs DS differences by focusing participants’ attention on the landmarks. Half of the participants in each group were instructed to identify the landmarks as they passed them the first time. The participants with DS again committed more errors than the participants in the ID and TD groups in the navigation task. In addition, they recalled fewer landmarks. While landmark identification improved landmark memory for both groups, it did not have a significant impact on navigation. Participants with DS still performed more poorly than did the TD and ID participants. Of additional interest, we observed that the performance of persons with DS correlated with different ability measures than did the performance of the other groups. The results the two experiments point to a problem in navigation for persons with DS that exceeds expectations based solely on intellectual level. (shrink)

Testing embryonic cells for genetic abnormalities gives us the capacity to predict whether and to what extent people will exist with disease and disability. Moreover, the freezing of embryos for long periods of time enables us to alter the length of a normal human lifespan. After highlighting the shortcomings of somatic‐cell gene therapy and germ‐line genetic alteration, I argue that the testing and selective termination of genetically defective embryos is the only medically and morally defensible way to prevent the existence (...) of people with severe disability, pain and suffering that make their lives not worth living for them on the whole. In addition, I consider the possible harmful effects on children born from frozen embryos after the deaths of their biological parents, or when their parents are at an advanced age. I also explore whether embryos have moral status and whether the prospects for disease‐preventing genetic alteration can justify long‐term cryopreservation of embryos. (shrink)

Brain-computer interfaces (BCIs) have been successfully used by adults, but little information is available on BCI use by children, especially children with severe multiple impairments who may need technology to facilitate communication. Here we discuss the challenges of using non-invasive BCI with children, especially children who do not have another established method of communication with unfamiliar partners. Strategies to manage these challenges require consideration of multiple factors related to accessibility, cognition, and participation. These factors include decisions (...) regarding where (home, clinic, or lab) participation will take place, the number of sessions involved, and the degree of participation necessary for success. A strategic approach to addressing the unique challenges inherent in BCI use by children with disabilities will increase the potential for successful BCI calibration and adoption of BCI as a valuable access method for children with the most significant impairments in movement and communication. (shrink)

From a cultural-historical perspective, the impairments of a child with a condition like cerebral palsy have biological origins, but the disability evolves from the mismatch between the child and his/her social conditions for development. One example of this dialectical production of disability can be seen in the challenge of the 21st-century welfare state: How to provide economically feasible health and educational services anchored in evidence-based methods and practices. Standardized social service pathways for children with CP illustrates an attempt to (...) address this challenge and moderate the mismatch by acting in the intersection between impairment and society. The aim of the article is to analyze challenges in the practice of connecting research and practice-based knowledge with societal practices in order to diminish the disability of the child. A multidisciplinary group assembled by the Danish National Board of Social Services engaged in a practice of developing a guideline for a social service pathway. Agendas and minutes from their series of meetings provide insight in how the work evolved through conflictual discussions. Rather than a neutral transformation of knowledge into practice, the practice revealed itself as a value-laden process in which the needs of the child and family were at times decentred and the focus shifted to how social services could be realised in complex, structured social practices. While the group managed to overcome several conflicts and agree of a social service pathway, a socio-economic analysis was unable to argue for the comprehensive social service pathway as an economic sound choice for municipal decision-makers. The conflict between the welfare ideology and economic feasibility remains unresolved and can be expected to limit the extent that impairments can be remedied and the mismatch decreased. Overcoming or diminishing the mismatch might never become economic worthwhile. As the political pendulum oscillates between welfare and economic concerns, the experience of disability will likewise diminish or expand. (shrink)

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)

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When (...) professionals assess the resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition. (shrink)

The study reported in this paper utilised a qualitative approach to investigate the everyday lives of two children with cerebral palsy, as experienced by their carers. Analysis of the data collected through in-depth interviews with the girls’ teachers, mothers and therapists was informed by the reflective lifeworld research approach of Dahlberg et al.. The broader theme identified, negotiating motor in/capabilities, comprised the constituent sub-themes identity and difference, and living motor in/capabilities in a disabling/enabling environment. The phenomenological approach employed revealed (...) that, as experienced by their carers, the two girls, both of whom have quite profound forms of motor impairment, flourish by utilising their bodily and psychosocial resources towards experiencing enhanced autonomy and a sense of mastery. Overall, their respective carers served as resources for each of the girls, providing them with enabling social and physical environments that promote their optimal functioning. Theory-driven intervention efforts to promote social participation and well-being in children with cerebral palsy who have severe motor impairments would benefit from taking into account the nuances and complexities inherent in the everyday experiences of these children. (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)