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The Disability Bioethics Reader is the first introduction to the field of bioethics presented through the lens of critical disability studies and the philosophy of disability. 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. Directly addressing this omission, this volume includes 36 chapters, most appearing here for the first time, that cover key areas pertaining to disability bioethics, such as: state-of-the-field analyses of modern medicine, bioethics, and disability theory health, disease, and the philosophy of medicine issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and minimally conscious states enhancement and biomedical technology invisible disabilities, chronic pain, and chronic illness implicit bias and epistemic injustice in health care disability, quality of life, and well-being race, disability, and healthcare justice connections between disability theory and aging, trans, and fat studies prenatal testing, abortion, and reproductive justice. The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades of empirical and theoretical scholarship in disability studies—scholarship that spans the social sciences and humanities—and gives serious consideration to the history of disability activism.
Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.
Intellectual disability is often overlooked within mainstream disability studies, and theories developed about disability and physical impairment may not always be appropriate when thinking about intellectual (or learning) disability. This pioneering book, in considering intellectually disabled people's lives, sets out a care ethics model of disability that outlines the emotional caring sphere, where love and care are psycho-socially questioned, the practical caring sphere, where day-to-day care is carried out, and the socio-political caring sphere, where social intolerance and aversion to difficult differences are addressed. It does so by discussing issue-based everyday life, such as family, relationships, media representations and education, in an evocative and creative manner. This book draws from an understanding of how intellectual disability is represented in all forms of media, a feminist ethics of care, and capabilities, as well as other theories, to provide a critique and alternative to the social model of disability as well as illuminate care-less spaces that inhabit all the caring spheres. The first two chapters of the book provide an overview of intellectual disability, the debates surrounding disability, and outline the model. Having begun to develop an innovative theoretical framework for understanding intellectual disability and being human, the book then moves onto empirical and narrative driven issue-based chapters. The following chapters build on the emergent framework and discuss the application of particular theories in three different substantive areas: education, mothering and sexual politics. The concluding remarks draw together the common themes across the applied chapters and link them to the overarching theoretical framework. An important read for all those studying and researching intellectual or learning disability, this book will be an essential resource in sociology, philosophy, criminology (law), social work, education and nursing in particular.
As prenatal tests proliferate, the medical and broader communities perceive that such testing is a logical extension of good prenatal care—it helps parents have healthy babies. But prenatal tests have been criticized by the disability rights community, which contends that advances in science should be directed at improving their lives, not preventing them. Used primarily to decide to abort a fetus that would have been born with mental or physical impairments, prenatal tests arguably reinforce discrimination against and misconceptions about people with disabilities. In these essays, people on both sides of the issue engage in an honest and occasionally painful debate about prenatal testing and selective abortion. The contributors include both people who live with and people who theorize about disabilities, scholars from the social sciences and humanities, medical geneticists, genetic counselors, physicians, and lawyers. Although the essayists don't arrive at a consensus over the disability community's objections to prenatal testing and its consequences, they do offer recommendations for ameliorating some of the problems associated with the practice.
Exploring issues of disability culture, activism, and policy across the African continent, this volume argues for the recognition of African disability studies as an important and emerging interdisciplinary field.
This book reconceives disability as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. The author looks at not only the biomedical understanding of impairment, but also its cultural representations and social organization.
Intellectual Disability: Ethics, Dehumanization, and a New Moral Community presents an interdisciplinary exploration of the roots and evolution of the dehumanization of people with intellectual disabilities. Examines the roots of disability ethics from a psychological, philosophical, and educational perspective Presents a coherent, sustained moral perspective in examining the historical dehumanization of people with diminished cognitive abilities Includes a series of narratives and case descriptions to illustrate arguments Reveals the importance of an interdisciplinary understanding of the social construction of intellectual disability
Kristien Hens succeeds in weaving together experiential expertise of both people with autism and their parents, scientific insights and ethics, and does so with great passion and affection for people with autism (with or without mental or other disabilities). In this book she not only asks pertinent questions, but also critically examines established claims that fail to take into account the criticism and experiences of people with autism. Sam Peeters, author of Autistic Gelukkig (Garant, 2018) and Gedurfde vragen (Garant, 2020); blog @ Tistje.com What does it mean to say that someone is autistic? Towards an Ethics of Autism is an exploration of this question and many more. In this thoughtful, wide-ranging book, Kristien Hens examines a number of perspectives on autism, including psychiatric, biological, and philosophical, to consider different ways of thinking about autism, as well as its meanings to those who experience it, those who diagnose it, and those who research it. Hens delves into the history of autism and its roots in the work of Leo Kanner and Hans Asperger to inform a contemporary ethical analysis of the models we use to understand autism today. She explores the various impacts of a diagnosis on autistic people and their families, the relevance of disability studies, the need to include autistic people fully in discussions about (and research on) autism, and the significance of epigenetics to future work on autism. Hens weaves together a variety of perspectives that guide the reader in their own ethical reflections about autism. Rich, accessible, and multi-layered, this is essential reading for philosophers, educational scientists, and psychologists who are interested in philosophical-ethical questions related to autism, but it also has much to offer to teachers, allied health professionals, and autistic people themselves.
This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics.
Does what we are capable of doing define us as human beings? If this basic anthropological assumption is true, where can that leave those with intellectual disabilities, unable to accomplish the things that we propose give us our very humanity? Hans Reinders here makes an unusual claim about unusual people: those who are profoundly disabled are people just like the rest of us. He acknowledges that, at first glance, this is not an unusual claim given the steps taken within the last few decades to bring the rights of those with disabilities into line with the rights of the mainstream. But, he argues, that cannot be the end of the matter, because the disabled are human beings before they are citizens. "To live a human life properly," he says, "they must not only be included in our institutions and have access to our public spaces; they must also be included in other people's lives, not just by natural necessity but by choice." Receiving the Gift of Friendship consists of three parts: (1) Profound Disability, (2) Theology, and (3) Ethics. Overturning the "commonsense" view of human beings, Reinders's argument for a paradigm shift in our relation to people with disabilities is founded on a groundbreaking philosophical-theological consideration of humanity and of our basic human commonality. Moreover, Reinders gives his study human vividness and warmth with stories of the profoundly disabled from his own life and from the work of Jean Vanier and Henri Nouwen in L'Arche communities.