This chapter contains sections titled: Why Philosophy and Cognitive Disability? Historical Overview Discussion of Themes and the Chapters Concluding Remarks References.

This chapter contains sections titled: Introduction: Liberalism and Inclusiveness Liberalism: Political and Metaphysical Collaborating on Ideas of the Good Powers of Self‐Control Conclusion References.

Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot (...) be sure whether their behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of “prosthetic” thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice. (shrink)

In the article, we consider the objections of the capability approach to Rawls’s theory of public justification. The objection is that Rawls’s theory is considered with an exclusive focus on reason and rationality as essential properties of justice, excluding from the domain of justice people who do not possess these properties (such as people with severe cognitive impairments). We point out the shortcomings of the alternative proposal to the capability theory, which is based on the (...) dignity of the species, because we claim that no valid normative conclusions can be derived from the concept of the species. We conclude by adopting a model of public justification according to which duties and rights are determined by reasonable people (ideal legislators). Reasonable people impartially judge the principles of justice even for those who do not participate in the process of justification but deserve the recognition of rights by universalizing these rights. Through universalization, they justified these rights for themselves and for those they represented by presenting adequate representatives in the process of justifying the principles of justice for those who do not have the capability to be reasonable and rational. (shrink)

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

People with cognitive disabilities are equal citizens, and law ought to show respect for them as full equals. To do so, law must provide such people with equal entitlements to medical care, housing, and other economic needs. But law must also go further, providing people with disabilities truly equal access to education, even when that is costly and involves considerable change in current methods of instruction. The central theme of this essay is what (...) is required in order to give such people political and civil rights on a basis of genuine equality. (shrink)

This chapter contains sections titled: 1. Frontiers of Justice and the Challenge of Disability 2. The General Approach of Frontiers of Justice 3. Equality and Adequacy 4. Social and Economic Entitlements 5. Equality in Education 6. Equality in Political Entitlements Acknowledgments References.

The phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor (...) that it might make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)

In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses (...) a procedural checklist to guide this process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, ‘strategic substitute decision-making’, paralleled the MCA’s legal and ethical framework, whilst the second process, ‘relational substitute decision-making’, was markedly different from these statutory procedures. In this setting, ‘relational substitute decision-making’ underpinned everyday personal and social interventions connected with residents’ daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed. (shrink)

This essay explores problems of consistency among commonsense beliefs about the comparative moral status of animals, fetuses, and human beings congenitally endowed with cognitive capacities and potential no higher than those of higher animals. The possibility of genetic cognitive enhancement exacerbates some of these problems, but also offers new resources for understanding the basis of our moral status as inviolable.

This chapter provides a roadmap of ongoing conversations about cognitive disability and moral status. Its aim is to highlight the political stakes of these conversations for advocates for the cognitively disabled while at the same time bringing out how a fundamental point of divergence within the conversations has to do with what count as appropriate methods of ethics. The main divide is between thinkers who take ethical neutrality to be a regulative ideal for doing empirical justice to (...) the lives of people with cognitive disabilities and those who reject this methodological precept as unduly restrictive. What results is a debate between, on the one hand, fans of various familiar forms of moral individualism and Kantian approaches in ethics and, on the other, a range of disability scholars and activists who implicitly or explicitly make use of philosophically more radical methods. (shrink)

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. (...) We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives. (shrink)

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. (...) We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives. (shrink)

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people (...) with intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed how (...) their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

The social and cultural model of disability has challenged the historically powerful perception of disability as a deficiency. Disability is no longer conceived of solely in terms of an individual lack of capacities but also considered as a structural effect of disabling social institutions and normalizing thinking. The UN Convention on the Rights of Persons with Disabilities (CRPD) from 2006 marks a decisive step towards the recognition of humans with (cognitive) disabilities as legal subjects (...) who are entitled to enjoy all human rights on equal terms with others. A central claim of the CRPD refers to full political participation of persons with (cognitive) disabilities. This paper argues for strengthening the political participation of persons with severe cognitive disabilities. The normative starting point is the claim that they are our equals, both morally and socially. In spelling out this status equality for the realm of the political, I focus on what political equality and inclusivity means concerning franchise. I will argue that the disenfranchisement of persons with cognitive disabilities, as practiced in many countries, cannot be justified. Furthermore, enfranchising persons with cognitive disabilities is deemed a central expression of their recognition as equals. Thus, it marks a crucial moment of emancipatory transformation towards a more inclusive political system. In cases where severely cognitive disabled persons cannot exercise the right to vote themselves, forms of assisted voting and supported decision-making must be available. (shrink)

The republican ideal of non-domination identifies the capacity for arbitrary interference as a fundamental threat to liberty that can generate fearful uncertainty and servility in those dominated. I argue that republican accounts of domination can provide a powerful analysis of the nature of legal and institutional power that is encountered by people with mental disorders or cognitive disabilities. In doing so, I demonstrate that non-domination is an ideal which is pertinent, distinctive, and desirable in thinking (...) through psychological disability. Finally, I evaluate republican strategies for contesting domination, focusing on the limits of contestatory democracy, and proposing a participatory alternative which better addresses problems of political agency in the mentally disordered and cognitively disabled. (shrink)

Background Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who (...) recruit people with dementia to research projects, to inform the future development of training resources. Methods A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents’ confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. Results 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling ‘very confident’ in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers’ confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. Conclusions Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families. (shrink)

Living organ donation will soon become the source of the majority of organs donations for transplant. Should mentally handicapped people be allowed to donate, or should they be considered a vulnerable group in need of protection? I discuss three cases of possible living organ donors who are developmentally disabled, from three different cultures, the United States, Germany, and India. I offer a brief discussion of three issues raised by the cases: (1) cultural diversity and cultural relativism; (2) autonomy, rationality, (...) and self-interest; and (3) the proper use and role for clinical ethics consults. (shrink)

Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. (...) The aim of this paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people (...) with cognitive disabilities are sometimes unable to make important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take (...) on what social inclusion for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

In asking scholars to reflect on the structures and practices of academic knowledge that render alternative knowledge traditions irrelevant and invisible, as well as on the ways these must change for the academy to cease functioning as an instrument of westernization rather than as an authentically global and diverse intellectual commons, the editor of this special issue of the Journal of Academic Ethics is envisaging a world much needed and much resisted. A great deal of the conversation about diversity in (...) higher education emphasizes, rightly, the need for an international and ethnically diverse population of scholars and students. Less attention is paid to the value of cognitive diversity—the diversity of cognition generated by cognitive disabilities. As one aspect of intellectual diversity, cognitive diversity promises novel ways of thinking and new understandings of what knowledge is, who makes it, and how it is made. The unique value of cognitive diversity is its insistence on a radical shift in our conception of who can know and who can produce knowledge. Insisting on the inclusion, as scholars, of persons with minds labelled disabled, an epistemology of disability pushes us to reform the much criticized but still dominant notion of the expert and scholar as able-bodied and hyper-rational. (shrink)

A leading cognitive scientist argues that a deep sense of good and evil is bred in the bone. From John Locke to Sigmund Freud, philosophers and psychologists have long believed that we begin life as blank moral slates. Many of us take for granted that babies are born selfish and that it is the role of society—and especially parents—to transform them from little sociopaths into civilized beings. In Just Babies, Paul Bloom argues that humans are in fact hardwired (...) class='Hi'>with a sense of morality. Drawing on groundbreaking research at Yale, Bloom demonstrates that, even before they can speak or walk, babies judge the goodness and badness of others’ actions; feel empathy and compassion; act to soothe those in distress; and have a rudimentary sense of justice. -/- Still, this innate morality is limited, sometimes tragically. We are naturally hostile to strangers, prone to parochialism and bigotry. Bringing together insights from psychology, behavioral economics, evolutionary biology, and philosophy, Bloom explores how we have come to surpass these limitations. Along the way, he examines the morality of chimpanzees, violent psychopaths, religious extremists, and Ivy League professors, and explores our often puzzling moral feelings about sex, politics, religion, and race. In his analysis of the morality of children and adults, Bloom rejects the fashionable view that our moral decisions are driven mainly by gut feelings and unconscious biases. Just as reason has driven our great scientific discoveries, he argues, it is reason and deliberation that makes possible our moral discoveries, such as the wrongness of slavery. Ultimately, it is through our imagination, our compassion, and our uniquely human capacity for rational thought that we can transcend the primitive sense of morality we were born with, becoming more than just babies. -/- Paul Bloom has a gift for bringing abstract ideas to life, moving seamlessly from Darwin, Herodotus, and Adam Smith to The Princess Bride, Hannibal Lecter, and Louis C.K. Vivid, witty, and intellectually probing, Just Babies offers a radical new perspective on our moral lives. (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)

The use of doll therapy for people with dementia has been emerging in recent years. Providing a doll to someone with dementia has been associated with a number of benefits which include a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with others. It could be argued that doll therapy fulfils the concepts of beneficence and respect for autonomy. However, some may believe that doll therapy (...) is inappropriate when applied to the concepts of dignity and non-maleficence. The absence of rigorous empirical evidence and legislative guidelines render this a therapy that must be approached cautiously owing to the varied subjective interpretations of Kitwood’s ‘malignant social psychology’ and bioethics. This article suggests that by applying a ‘rights-based approach’, healthcare professionals might be better empowered to resolve any ethical tensions they may have when using doll therapy for people with dementia. In this perspective, the internationally agreed upon principles of the United Nations Convention on the Rights of Persons with Disabilities provide a legal framework that considers the person with dementia as a ‘rights holder’ and places them at the centre of any ethical dilemma. In addition, those with responsibility towards caring for people with dementia have their capacity built to respect, protect and fulfil dementia patient’s rights and needs. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral and political considerations (...) play an essential role in setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention. (shrink)

Many people believe that all human life is of equal value. Most of them also believe that all human beings have a moral status superior to that of nonhuman animals. But how are these beliefs to be defended? The mere difference of species cannot in itself determine moral status. The most obvious candidate for regarding human beings as having a higher moral status than animals is the superior cognitive capacity of humans. People with profound mental (...) retardation pose a problem for this set of beliefs, because their cognitive capacities are not superior to those of many animals. I argue that we should drop the belief in the equal value of human life, replacing it with a graduated view that applies to animals as well as to humans. (shrink)

Robert George and Christopher Tollefsen argue that human beings have fundamental dignity and basic rights (“human rights”) in virtue of the kind of entity they are—creatures bearing a rational nature. The indicia of a rational nature are the basic natural capacities—which obtain from the point a rational creature comes into existence—for thinking, deliberating, and choosing, whether or not these capacities are immediately exercisable. All human beings, including those who are asleep, or under general anesthesia, or who (...) are in deep comas or persistent minimally conscious states, are bearers of a rational nature. The same is true of those suffering even severe cognitive disabilities. A person with advanced Alzheimer’s disease, for example, has not undergone a change of nature—he is not a creature different in species or otherwise different in kind from what he was before the onset of the disease. Bearers of fundamental dignity and basic rights, which includes all human beings, must not be treated as mere objects or instruments by, for example, subjecting them to damaging or deadly experimentation designed for the benefit of others. So the question at the heart of debates over human embryo research is the empirical one, fully accessible to inquiry using scientific methods of analysis: Is the human embryo, from the formation of the zygote forward, a human being, viz., a living member of the species Homo sapiens. George and Tollefsen assess the evidence and conclude that the answer to that question is unambiguously yes. (shrink)

Spearman’s Law of Diminishing Returns holds that correlation between general /fluid intelligence factor and other cognitive abilities weakens with increasing ability level. Thus, cognitive processing in low ability people is most strongly saturated by g/gf, whereas processing in high ability people depends less on g/gf. Numerous studies demonstrated that low g is more strongly correlated with crystallized intelligence/creativity/processing speed than is high g, however no study tested an analogous effect in the case of working (...) memory. Our aim was to investigate SLODR for the relationship between Gf and WM capacity, using a large data set from our own previous studies. We tested alternative regression models separately for three types of WM tasks that tapped short-term memory storage, attention control, and relational integration, respectively. No significant SLODR effect was found for any of these tasks. Each task shared with Gf virtually the same amount of variance in the case of low- and high-ability people. This result suggests that Gf and WM rely on one and the same cognitive mechanism. (shrink)

Law 49/2018, of August 14, created the Portuguese legal regime of the assisted decision-making (capacity), thus eliminating the legal institutes of interdiction and disqualification, provided for in the Civil Code (CC). The aim of this legal regime was to embed a new vision of disability based on a model of rights, that grants people with disabilities an independent and autonomous life and reflects the acceptance of the International Convention on the Rights of Persons with Disabilities (...) (CRPD) guidelines. This paper intends to discuss the ‘new’ Portuguese legal system regarding the legal capacity of persons with disabilities and its role in valuing the expression of the real will of people with disabilities. (shrink)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often (...) offer reassurance that such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

This article questions the reason behind ethics in caregiving services for people with serious intellectual disabilities, the reasons changes have taken place in medicine, in the kinds of illnesses, social changes and changes in how hospitality is envisioned, which lead us to reconsider the usual way of doing things, the traditional morals on which their treatment has been based. However, the traditional ways of dealing with those disabled individuals have also become obsolete and are ethically reproachable: (...) based on charity and beneficence, goodwill and paternalism, if not on ignorance and vulnerability. (shrink)

Euthanasia and assisted suicide have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: voluntary and well-considered request; unbearable suffering without prospect of improvement; informing the patient; lack of a reasonable alternative; independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees. The purpose of this (...) study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. The 416 case summaries available on the RTE website were searched for intellectual disability and autism spectrum disorder. Direct content analysis was used on these nine cases. Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. (shrink)

Background: Humor, both producing and appreciating, underpins positive social interactions acting as a facilitator of communication. There are clear links to wellbeing that go along with this form of social engagement. However, humor appears to be a seldom studied, cross-disciplinary area of investigation when applied to people with an intellectual disability, this review collates the current state of knowledge regarding the role of humor behavior in the social interactions of people with intellectual disabilities and (...) their carers. Method: A systematic review utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was completed which aimed to explore the current state of knowledge and quality of empirical evidence relating to humor in people with intellectual disabilities. Following this, articles were grouped thematically and summarized. A comprehensive search of four electronic databases (1954–2017) and additional search strategies yielded 32 articles which met the final inclusion criteria. Results: Humor played a significant positive and negative role in the social interactions of people with intellectual disabilities. Research had investigated humor in the classroom and humor expression in different groups including those with autism, Down syndrome, Angelman syndrome, Williams syndrome and Rett syndrome. Few investigations directly studied humor appreciation and comprehension hence themes did not focus solely on humor production/appreciation. Humor comprehension was reportedly supported by gestures. Some groups with intellectual disabilities found non-literal humor (e.g. sarcasm, irony) more difficult to understand which may affect social relationships. Various types of humor were found to be appreciated. The role of humor in relationship development, social facilitation, creativity and stigma had all received some limited attention. Humor also played a role for carer groups in coping with and enjoying the caring role. Research varied in quality with few experimental studies and mainly quasi-experimental and well-conducted qualitative studies. Conclusions: This review revealed the importance of humor behavior in many aspects of the social lives of people with intellectual disabilities. Limited disparate research exists pertaining to humor in this group, suggesting the need for further robust research in this area, including more high quality primary research in the areas of humor production, appreciation, comprehension and stigma. (shrink)

It is a popular view thatpractical deliberation excludes foreknowledge of one's choice. Wolfgang Spohn and Isaac Levi have argued that not even a purely probabilistic self-predictionis available to thedeliberator, if one takes subjective probabilities to be conceptually linked to betting rates. It makes no sense to have a betting rate for an option, for one's willingness to bet on the option depends on the net gain from the bet, in combination with the option's antecedent utility, rather than on (...) the offered odds. And even apart from this consideration, assigning probabilities to the options among which one is choosing is futile since such probabilities could be of no possible use in choice. The paper subjects these arguments to critical examination and suggests that, appearances notwithstanding, practical deliberation need not crowd outself-prediction. (shrink)

Political theory contains two views of social care for people with intellectual disabilities. The favor view treats disability services as an undeserved gratuity, while the entitlement view sees them as a deserved right. This paper argues that David Hume is one philosophical source of the favor view; he bases political membership on a threshold level of mental capacity and shuts out anyone who falls below. Hume’s account, which excludes people with intellectual disabilities from justice (...) owing to their lack of power, but includes them in charity, is morally deficient. The shortcomings of Hume’s theory underscore the necessity of having a view of justice which ensures that people with intellectual disabilities are not marginalized. In defending the entitlement view, I integrate philosophical analysis and concrete examples of policy issues. (shrink)

This paper considers the range of possible policy options that are available if we wish to attempt to treat people with cognitive disabilities as equal members of society. It is suggested that the goal of policy should be allow each disabled person to establish a worthwhile place in the world and sets out four policy options: cash compensation, personal enhancement, status enhancement and targeted resource enhancement. The paper argues for the social policy of targeted resource enhancement for (...) individuals with cognitive disabilities, in the form of providing cash with some limits on its use. Taking the example from the UK of ‘self-directed support’ it is argued that such policies can be cost-effective and advance the autonomy of people with cognitive disabilities, especially when compared with current policies of centrally provided services. (shrink)

Key commentators on person‐centred care have described it as a “new ethic of care” which they link inextricably to notions of individual autonomy, action, change and improvement. Two key points are addressed in this article. The first is that few discussions about ethics and person‐centred are underscored by any particular ethical theory. The second point is that despite the espoused benefits of person‐centred care, delivery within the acute care setting remains largely aspirational. Choices nurses make about their practice tend to (...) comply more often with prevailing norms than those championed by person‐centred care. We draw on elements of work by moral philosopher Løgstrup and Foucault to provide insight into nurses’ ethical conduct and ask why nurses would want to act otherwise, when what they think and do is viewed as normal, or think and act otherwise if doing so is seen within the organization as transgressive? To address these more specific questions, we discuss them in relation to the following constructs: the ethical demand, sovereign expressions of life and parrhêsia. We conclude by arguing that a ethical theoretical framework enables nurses to increase their perceptibility and appreciation of the ethical demand particularly those emanating from incommensurability between organizational norms and the norms invoked by person‐centred care. We argue that nurses’ responses to the ethical demand by way of parrhêsia can be an important feature of intra‐organizational reflexivity and its transformation towards the delivery care that is more person‐centred, particularly for older people with cognitive impairment. We conclude the article by highlighting the implications of this for nursing education and research. (shrink)

Many theories of moral status that are intended to ground pro-choice views on abortion tie full moral status to advanced cognitive capabilities. Extant accounts of this kind are inconsistent with the intuition that the profoundly cognitively disabled have full moral status. This paper improves upon these extant accounts by combining an anti-luck condition with Steinbock’s stratification of moral status into two levels. On the resulting view, a being has full moral status if and only if she has (...) moral status and has had advanced cognitive capacities, has the potential to develop such capacities, or would have had such capacities were it not for luck. I argue that modal accounts of luck provide a non-speciesist basis for attributing the lack of advanced cognitive capacities in humans to luck without doing the same for non-human animals. (shrink)

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. (...) However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)

It is commonly held that there are both cases in which there is a strong moral reason not to cause the existence of a disabled person and cases in which, although it would be permissible to cause a disabled person to exist, it would be better not to. Yet many disabled people are affronted by the idea that it is sometimes better to prevent people like themselves from existing, precisely because these people would be disabled. One of (...) their grounds for concern, which will be my particular focus in this paper, is that claiming that there are reasons to prevent the existence of disabled people may be expressive of a demeaning and hurtful view of the status of existing disabled people, a view that may encourage discriminatory attitudes towards and treatment of the disabled. I will contend that there can indeed be moral and prudential reasons for preventing the existence of a disabled person. But I will argue that it is less obvious than many people assume what, if anything, the recognition of these reasons expresses about disabled people. And I will contend that, even if the recognition of these reasons does express a perception of disabled people that is potentially hurtful, this effect could be offset by the social expression of a contrary view that I will claim is in fact compatible with and equally valid as the potentially hurtful view. Whether it may be morally objectionable to cause a disabled person to exist depends, in part, on whether the person’s life would be worth living. If it is ever objectionable to cause a disabled person to exist, the objections are surely strongest when the person’s life would be “worth not living” – that is, would have aspects or features that would be bad for the person and that would decisively outweigh those, if any, that would be good. Such cases are, however, quite rare. Indeed, some people question whether there are any disabilities so severe as to cause life to be worth not living. It can be argued that disability involves only the absence of certain abilities and that mere deficits.... (shrink)

In De ciuitate Dei (ciu.), Augustine famously calls people with disabilities created on purpose by an absolutely competent God (16.8). On the whole, however, Augustine's views on disabilities in ciu. are often misunderstood. The statement about the creation of people with disabilities is part of a discussion of the theodicy question that implies that the goodness of people with disabilities is not open to experience and must be accepted on faith. This negative background assumption (...) results from Augustine's view that dignity emerges from the embodied beauty, rationality, and utility of the ensouled body (22). Augustine gives several examples of how disabilities reduce dignity along with these dimensions, as “deformity defeats beauty” (19.4). In eternal salvation, however, disabilities will be removed (22). Martyrs will perhaps retain scars in heaven, but these particular scars will be of such a kind that there is “not deformitas in them, but dignitas” (22.19). If in the resurrection for eternal life God removes congenital disabilities that God created so competently, what is their purpose in the first place? Augustine regards disabilities as temporal embodied warnings of eternal corporeal punishment (21.8). As a concluding perspective, the alternative view of disabilities by the Apostle Paul will be considered. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study (...) was carried out at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

Many proponents of deliberative democracy expect reasonable citizens to engage in rational argumentation. However, this expectation runs up against findings by behavioral economists and social psychologists revealing the extent to which normal cognitive functions are influenced by bounded rationality. Individuals regularly utilize an array of biases in the process of making decisions, which inhibits our argumentative capacities by adversely affecting our ability and willingness to be self-critical and to give due consideration to others’ interests. Although these biases cannot (...) be overcome, I draw on scientifically corroborated insights offered by Adam Smith to show that they can be kept in check if certain affective and cognitive capacities are cultivated. Smith provides a compelling account of how to foster sympathetic, impartial, and projective role-taking in the process of interacting with others, which can greatly enhance our capacity and willingness to critically assess our own interests and fairly consider those of others. (shrink)

Rational beliefs and actions are typically evaluated against certain benchmarks, e.g., those of classical logic or probability theory. Rationality therefore is traditionally taken to involve some sort of reasoning, which in turn implies contentful cognition. Radically Enactive views of Cognition, on the other hand, claim that not all cognition is contentful. In order to show that rationality does not need to lie outside of REC’s scope of radicalizing cognition, I develop a Radically Enactive notion of Rationality, according to (...) which rationality is embodied, situated and contentless. For RER, an organism acts rationally insofar as it sustains a proficient interaction with its environment, which in turn requires the coordination of cognitive abilities in accordance with environmental constraints. Rationality is thus distinguished from reasoning, for reasoning is understood as a capacity to coordinate representational cognitive abilities. (shrink)

Background: There is a growing interest in using cognitive behavioural therapy with people who have Asperger Syndrome and comorbid mental health problems. Aims: To examine whether modified group CBT for clinically significant anxiety in an AS population is feasible and likely to be efficacious. Method: Using a randomised assessor-blind trial, 52 individuals with AS were randomised into a treatment arm or a waiting-list control arm. After 24 weeks, those in the waiting-list control arm received treatment, (...) while those initially randomised to treatment were followed-up for 24 weeks. Results: The conversion rate for this trial was high, while attrition was 13%. After 24 weeks, there was no significant difference between those randomised to the treatment arm compared to those randomised to the waiting-list control arm on the primary outcome measure, the Hamilton Rating Scale for Anxiety. Conclusions: Trials of psychological therapies with this population are feasible. Larger definitive trials are now needed. Declaration of Interest: None Trial Registration: ISRCTN 30265294, UKCRN 8370. (shrink)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap (...) and argues that all are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that (...) were put in place to protect the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia. (shrink)

To systematically compare welfare across species, it is first necessary to explore whether welfare subjects of different species have the same or rather a different capacity for welfare. According to what seems to be the dominant philosophical view, welfare subjects with higher cognitive capacities have a greater capacity for welfare and are generally much better off than those with lower cognitive capacities. Višak carefully explores and rejects this view and argues instead that welfare (...) subjects of different species have the same capacity for welfare despite different cognitive capacities. This book prepares the philosophical ground for comparisons of welfare across species. It will inform and inspire ethicists and animal welfare scientists alike, as well as a broader readership interested in wellbeing, animals, and ethics. (shrink)