Abstract:This essay criticizes recent trends in disability policy as restrictive of individual liberty and informed by too narrow a definition of what constitutes human flourishing. I defend the value of intentional community settings as one legitimate residential option for people with intellectual and developmental disabilities. Recent federal regulations (HCBS Final Rule) define intentional communities or disability-specific housing as presumptively institutional in nature, misunderstanding the positive, noninstitutional features of intentional, integrated communities created by and for people with developmental (...) disabilities. In addition, current disability policy, despite its stated concern for the autonomy of people with intellectual and developmental disabilities, limits individual liberty by strictly defining the types of settings eligible for Medicaid waiver funding, expressly excluding agricultural communities, disability-specific residential settings, and intentional communities. A robust commitment to the autonomy of people receiving Medicaid waiver services would allow them to choose to direct their program dollars, recognizing that some individuals may choose a life in intentional community or with others facing similar challenges to themselves over an illusory “integration” into a wider society that remains too often unwelcoming and difficult to navigate. (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 disability rights movement (DRM) has often been closely associated with the liberal values of individual choice and independence, or the ‘ethics of agency’, where enhancing the capacity to make autonomous decisions in various policy and practice-based contexts is said to facilitate disabled people's well-being. Nevertheless, other liberal values are derived from what will be termed here the ‘ethics of self-acceptance’. The latter is more disguised in liberalism and the DRM, as rather than emphasising the capacity to make (...) autonomous decisions, self-acceptance focuses on the positive acceptance of individual limitations, but again to enhance well-being. The further argument is that while the ethics of agency and self-acceptance often logically cohere and overlap, through promoting the values of self-respect and relational autonomy, dilemmas arise from our asymmetrical, or uneven, dispositions towards time, and present and future lives and experiences. For example, positively accepting individual limitations allows for a present-oriented immersion in ‘the moment’, but which often requires some suspension of future-oriented goals and aspirations. Understanding some of the implications of this asymmetry, and the dilemmas arising from it, provide important insights concerning approaches to physical and intellectual impairments and the subsequent debates within the DRM, social policy and welfare practice. (shrink)

As debate continues around the nature and values of education, it is important to ask the question of what factors motivate a student to engage with the ends of an educational institution. In this paper, a broad, holistic view of learner motivation, derived from Aristotelian ethics, is used to provide a model to drive institutional change. Focussing on the approach of one Higher Education institution to the particular accommodations required for students with disabilities, the paper identifies three factors which motivate (...) students, a failure to engage with the aims and ends of the educational project, a failure to see that a particular learning aim is worth attaining, and a simple lack of will‐power to attain it. To each of these failures a social cause is identified, and a change in both the institutional culture and the individual learner's approach to their education is suggested. (shrink)

In disability studies, social and medical explanatory models are seen as being conflicting or mutually exclusive, and as mystifying respectively bodily impairment and the agency of social and environmental factors. This article uses critical discourse analysis to discuss the relationship between such models in policy documents produced by The Norwegian Federation of Organizations of Disabled People. Analysis of key topoi in the policy documents shows that they display elements of both social and medical discourse, and that the (...) consequences of medically defined impairments are used as justifications for policy interventions in a framework of social justice. While a strict version of the social model is adopted in general programmatic documents, arguments about specific policy fields conceptualize disability as a property of individuals — traditionally, a medical model framing. Analysis of topoi is shown to be a useful tool when CDA is applied to policy texts. (shrink)

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model (...) and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. (shrink)

How should we respond to individuals with disabilities? What does it mean to be disabled? Over fifty million Americans, from neonates to the fragile elderly, are disabled. Some people say they have the right to full social participation, while others repudiate such claims as delusive or dangerous. In this compelling book, three experts in ethics, medicine, and the law address pressing disability questions in bioethics and public policy. Anita Silvers, David Wasserman, and Mary B. Mahowald test important theories (...) of justice by bringing them to bear on subjects of concern in a wide variety of disciplines dealing with disability. They do so in the light of recent advances in feminist, minority, and cultural studies, and of the groundbreaking Americans with Disabilities Act. (shrink)

For the last eighteen months, I have worked with a group of disability and health policy researchers. I began this interview-based project trying to learn how these researchers’ disability identities shaped their work. How did their disability standpoint contribute to the liberatory nature of their research? I found that the disability standpoint of these researchers was in fact hard-won and grew not just out of their own disability experiences but out of their connections with (...) the larger disability community. These connections, for the most part, helped researchers come to “claim crip,” and that later influenced their research. (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)

We propose six guideposts that states and hospitals should follow to respect disability rights when designing policies for the allocation of scarce, lifesaving medical treatments. Four relate to criteria for decisions. First, do not use categorical exclusions, especially ones based on disability or diagnosis. Second, do not use perceived quality of life. Third, use hospital survival and near-term prognosis (e.g., death expected within a few years despite treatment) but not long-term life expectancy. Fourth, when patients who use ventilators (...) in their daily lives (e.g., home ventilation) present to acute care hospitals, their personal ventilators should not be reallocated to other patients. Fifth, designate triage officers to assess patients individually on the basis of objective medical evidence, not stereotypes or assumptions. Sixth, include disability rights advocates in policy development and dissemination. (shrink)

It often appears that the most appropriate form of addressing disadvantage related to disability is through policies that can be called “status enhancements”: changes to the social, cultural and material environment so that the difficulties experienced by those with impairments are reduced, even eradicated. However, status enhancements can also have their limitations. This paper compares the relative merits of policies of status enhancement and “personal enhancement”: changes to the disabled person. It then takes up the question of how to (...) assess the priority of the claims of disabled people in the face of scarcity of resources for which there can be many competing social claims, arguing for the theory of “declustering disadvantage”. (shrink)

The World Health Organization (WHO) has identified mental health as a priority for global health promotion and international development to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements — in particular, disabled persons' organizations (DPOs). These tensions come into focus upon situating the WHO's mental health policy initiatives (...) in light of certain controversies arising under the Convention on the Rights of Persons with Disabilities (CRPD), particularly as it applies to persons with mental (psychosocial) disabilities. I examine two such controversies — concerning, respectively, the legitimacy of involuntary psychiatric interventions and the legitimacy of regimes of substitute decision-making. These controversies illustrate the radical challenges to global and domestic mental health policy that have gained new momentum through the participation of DPOs in the CRPD process. At the same time, they illustrate the need for ongoing, inclusive forums for deliberation at the nexus of mental health policy and human rights, aimed at enabling human flourishing within a framework of respect for diversity. (shrink)

Predictive genetic testing poses fundamental questions for disability insurance, a crucial resource funding basic needs when disability prevents income from work. This article, from an NIH-funded project, presents the first indepth analysis of the challenging issues: Should disability insurers be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How can we assure that private insurers writing individual and group policies, employers, and public (...) insurers deal competently and appropriately with genetic testing? (shrink)

One of the most significant economic challenges faced by people with disabilities in Turkey and globally is employment. Unfortunately, even in developed countries, the desired level of employment of the disabled individuals has not yet been measured up. The fundamental rights and freedoms of employment and labor have gained a basis of legitimacy through certain principles within the legal system throughout human history. As a matter of fact, in the main references of Islamic law, the principles of justice, rights, equality (...) of opportunity, merit, anti-discrimination, and social responsibility for all people in general and disabled people in particular have been a reference in the development of employment policies. In this regard, the main objective of Islamic economic policies has been determined as ensuring the happiness of the individual in this world and the hereafter since the early period. The study first includes active and passive employment models developed in modern legal systems. It can be stated in this framework that from the early period, both in the practices of the Prophet Muhammad and the Companions and in the later Islamic societies, institutionalization was provided according to the characteristics of the period in which disabled individuals were actively and passively employed, and it can be stated that the developments regarding the employment of disabled individuals in Islamic societies started much earlier than expected. However, we must admit that legal regulations in the modern sense were introduced later compared to the West. The study focuses on the phenomenon of disability, the problems and needs of the disabled, and the studies on employment in Islamic societies from the past to the present. It is determined that many disabled people in Islamic society are actively employed in state positions ranging from imam to judge, from commander to governor according to their abilities, and the disabled people who cannot be employed are compensated for their disadvantages through passive employment methods such as health, care, housing, salary binding, and tax reduction. Determining the principles of employment of disabled according to Islamic law is the main subject of the study, and it has been established that maslahah, custom, siyasa shar’iyya, merit, and sedd-i zerâi constitute the jurisprudential basis of the employment of the disabled in Islamic law. In this framework, it has been stated that the principle of maslahah plays a key role in the development of social responsibility policies, in resolving issues that are not included in verses and hadiths and furû fiqh acquis, in gaining the economic independence of disabled and ensuring the minimum standard of living. Maslahah is also beneficial for the individual, family, society and the state, too. It has been pointed out that the employment of disabled people has become one of the most significant matters of both national and international legal regulations today, and it has been determined that the employment of disabled people has transformed into customary practices in accordance with the criteria of being a source of Islamic law. In Islamic administrative law, active and passive employment policies, legal regulations, and institutional structures related to disabled are carried out by the authority delegated to public administrators under the siyasa shar'iyya. It has been emphasized that administrative and public service appointments in Islamic law are ordered to be made on the basis of merit, that nepotism and favoritism are prohibited, and that disability is not an obstacle to employment. In conclusion, the insufficiency of studies on employment of people with disabilities in Islamic law has been pointed out and it has been suggested that further studies should be carried out on these subjects and exploitation of disability according to Islamic law should be studied. (shrink)

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance (...) Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

Disability, like questions of race, gender, and class, is one of the most provocative topics among theorists and philosophers today. This volume, situated at the intersection of feminist theory and disability studies, addresses questions about the nature of embodiment, the meaning of disability, the impact of public policy on those who have been labeled disabled, and how we define the norms of mental and physical ability. The essays here bridge the gap between theory and activism by (...) illuminating structures of power and showing how historical and cultural perceptions of the human body have been informed by and contributed to the oppression of women and disabled people. (shrink)

Public health emergencies such as pandemics can put health systems in a position where they need to ration medical equipment and interventions because the resources available are not sufficient to meet demand. In public health management, the fair allocation of resources is a permanent and cross-sector issue since resources, and especially economic resources, are not infinite. During the COVID-19 pandemic resources need to be allocated under conditions of extreme urgency and uncertainty. One very problematic aspect has concerned intensive care medicine (...) and age discrimination has been among the most hotly discussed issues, as age has been touted as a probable criterion for selection. In this paper we analyse some documents originating from scientific societies and medical associations, mainly related to EU sphere and available in English, French, Spanish and Italian, concerning the criteria for admission to the intensive care units. We highlights how, in most of these documents, it is explicitly stated that “age itself” is not a criterion for patient selection. Our conclusion is that these criteria should be defined in advance of a crisis situation and be grounded in clinical indicators. Establishing “cut-off” policies with regard to criteria such as age or chronic disability is definitely an unjustifiable form of discrimination even in the context of a public health emergency. (shrink)

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, (...) though we cannot make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)

The “expressivist objection” argues that prenatal screening leading to termination of embryos or fetuses with disabilities sends a harmful message to people with disabilities, such as the message that their lives are not worth living. I first argue that whether it sends such a message depends on how a reasonable person would see the motives behind the screening. I then argue that a reasonable person would see a harmful message, not when individuals terminate embryos, and not for severe disabilities, but (...) when the state allows the screening and termination of embryos with less severe conditions, such as Down syndrome. This sends the message that it is permissible not to pay a higher cost to support people with disabilities, when there is an abled alternative. This attitude is harmful to the welfare, rights and self-worth of people with disabilities because it reinforces the refusal to provide them with equal opportunity. The state therefore has a strong pro tanto reason to ban prenatal screening for less severe disabilities. (shrink)

This Article explores the connections between disability and health justice in service of further tethering the two theories and practices. The author contends that disability should shift from marker of health inequity alone to critical demographic in the analytical and practical application of health justice. This theoretical move creates a more robust understanding of the harms of health injustice, its complexities, and, remedially, reveals underexplored legal and policy pathways to promote health justice.

This Essay explains why model policies proposed or adopted in response to the COVID-19 pandemic that allocate scarce medical resources by using medical evidence to pursue two core goals—saving more lives and saving more years of life—are compatible and consonant with disability law. Disability law, properly understood, permits considering medical evidence about patients’ probability of surviving treatment and the quantity of scarce treatments they will likely use. It also permits prioritizing health workers, and considering patients’ post-treatment life expectancy. (...) These factors, when based on medical evidence and not inaccurate stereotypes, are legal to consider even if they disadvantage some patients with specific disabilities. It then discusses the ethical advantages of triage policies that use medical evidence to save more lives and years of life, which I call “evidence-based triage,” focusing on the benefits of these policies for patients with disabilities. In doing so, I explain why recent critiques err by treating people with disabilities as a monolith, overlooking the political disadvantages of less-visible victims, and treating the social origins of scarcity as a justification for saving fewer lives. Evidence-based triage parallels other policy responses to the COVID-19 pandemic, like physical distancing and postponement of medical procedures, which may burden patients with specific disabilities or medical conditions but are nevertheless justified because they save more patients. (shrink)

This paper asks whether statutory social insurance programs, which provide contributory tax-based income support to people with disabilities, are compatible with the disability rights movement's ideas. Central to the movement that led to the Americans with Disabilities Act is the insight that physical or mental conditions do not disable; barriers created by the environment or by social attitudes keep persons with physical or mental differences from participating in society as equals.The conflict between the civil rights approach and insurance seems (...) apparent. A person takes out insurance to deal with tragedy, such as premature death, or damage, such as accidental harm to an automobile or home. Social insurance, for example, the United States Social Security old-age and disability programs, consists of government-run insurance to cover risks of advanced age and disability for which the private market has not provided affordable coverage. But the civil rights approach to disability posits that disability is not a risk, not tragedy, and not a damage or defect. Instead it is a maladaptation of society to human variation. This paper argues that a justification remains for social insurance under the civil rights approach to disability, and further suggests that expansion of social insurance for disability is both compatible with disability rights principles and supported by wise public policy. (shrink)

Is disability disadvantageous? Although many assume it is paradigmatically so, many disabled individuals disagree. Whom should we trust? On the one hand, pervasive mistrust of already underrepresented groups constitutes a serious epistemic injustice. Yet, on the other, individuals routinely adapt to mistreatment and deprivation and claim to be satisfied. If we take such “adaptive preferences” (APs) at face value, then injustice and oppression may not be recognized or rectified. Thus, we must achieve a balance between taking individuals’ preferences and (...) self-assessment as definitive, and ignoring them entirely. Furthermore, current accounts of APs suffer from an ambiguity: are APs an unreliable guide to individuals’ interests, or to just policy? This chapter argues that we should distinguish between those that are unreliable in the former sense (“well-being APs”), and the latter (“justice APs”). Although all APs are nonautonomous, only well-being APs are irrational. Thus, preferences may be diagnosed as unreliable from the perspective of justice without impugning individuals’ rational capacities. (shrink)

Genetic testing poses fundamental questions for insurance. Testing can predict a low probability of future illness and disability, which can help promote the insurability of individuals with a family history of genetic risk, but it can also invite insurers to reject applicants, increase premiums, exclude people with certain illnesses and disabilities, and otherwise adjust the underwriting processes for individuals with certain genotypes. In the workplace, these issues may cause employers who offer or pay for insurance to alter their hiring (...) behavior, either by selecting those with desirable genetic makeup or rejecting, dismissing, or reassigning those who carry an unwanted risk, ultimately threatening employability and the safety net that insurance is intended to provide. (shrink)

This chapter contains sections titled: Acknowledgments References.

Contemporary bioethics has been somewhat skewed by its focus on high-tech medicine and the resulting development of ethical frameworks based on an acute-care model of healthcare. Research and scholarship in bioethics have payed only cursory attention to ethical issues related to disability. I argue that bioethics should concern itself with the full range of theoretical and practical issues related to disability. This encounter with the disability community will enrich bioethics and, potentially, society as well. I suggest a (...) number of items that the bioethics agenda should include, such as the development of a casuistry of the right to healthcare and to community integration and an advocacy role in fostering an understanding among the public and policy makers of the need to reform research and treatment related to disability. (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability (...) over the last fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

The World Health Organization has in the last decade identified mental health as a priority for global health promotion and international development, to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements — in particular, disabled persons’ organizations. These tensions come into focus upon situating the WHO’s contributions to the (...) analysis of global mental health in light of the negotiation and early stages of implementation of the Convention on the Rights of Persons with Disabilities, particularly as it applies to persons with mental disabilities. (shrink)

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It (...) argues that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

This book defends a comprehensive new vision of what addiction is and how people with addictions should be treated. The author argues that, in addition to physical and intellectual disabilities, there are volitional disabilities – disabilities of the will – and that addiction is best understood as a species of volitional disability. -/- This theory serves to illuminate long-standing philosophical and psychological perplexities about addiction and addictive motivation. It articulates a normative framework within which to understand prohibition, harm reduction, (...) and other strategies that aim to address addiction. The argument of this book is that these should ultimately be evaluated in terms of reasonable accommodations for addicted people and that the priority of addiction policy should be the provision of such accommodations. What makes this book distinctive is that it understands addiction as a fundamentally political problem, an understanding that is suggested by standard legal approaches to addiction, but which has not received a sustained defense in the previous philosophical or psychological literature. -/- This text marks a significant advance in the theory of addiction, one which should reshape our understanding of addiction policy and its proper aims. (shrink)

The subject of the book is about attitudes and reactions to different kinds of disabilities as well as remediation policies in Nigeria. It covers a number of areas including disabilities studies, education and philosophy of education.