Disability Ethics


Book Description

The social arrangements with which we are familiar work fairly well for most of us most of the time. We work, we earn, we pay taxes. We engage professionals when we need their advice. We expect that there will be doctors whose expertise can be relied upon if we are ill, that there will be schools staffed with knowledgeable teachers and courts presided over by fair judges. We vote for politicians who offer policies we favour. We require government to provide us with security, protect our freedom and assist those of us who cannot help themselves. These social arrangements rest on some shared assumptions and values. They assume that people are, by and large, free, self-determining persons who respect each other's rights and independence, and co-operate rationally and productively with each other. Our social arrangements are challenged when this assumption does not hold. What policies should government have in place for people who are not independent, or not rational, or not co-operative, or not productive? If, by some catastrophe, through accident, disability or mental illness, you became such a person, how should you be dealt with by professionals and government services? If, on the other hand, you are a professional, how should you go about making decisions for clients who are not well placed to make decisions for themselves? Are there standards of professional ethics that can deal with this situation? Are there ethical standards that can be applied by managers of service organizations, or by policy writers, or by government officials? Are there ethical standards that concerned citizens should demand of government, of service organizations and of professionals who provide for vulnerable people? Drawing on the stories of people with disabilities and their service providers, Paul Jewell explores ethical theories, tests their practical application, and offers strategies essential to practitioners, managers, policy-makers and professionals who provide services to people with disabilities.




The Disability Bioethics Reader


Book Description

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.




Prenatal Testing and Disability Rights


Book Description

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.




Disability, Health, Law, and Bioethics


Book Description

Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.




Disability in Africa


Book Description

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.




Intellectual Disability and Being Human


Book Description

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.




Intellectual Disability


Book Description

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




Towards an Ethic of Autism


Book Description

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.




Quality of Life and Human Difference


Book Description

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.




Disability Bioethics


Book Description

Jackie Leach Scully argues that bioethics cannot avoid the task of considering the moral meaning of disability in humans - beyond simply regulating reproductive choices or new areas of biomedical research. By focusing on the experiential and empirical reality of impairment, and drawing on recent work in disability studies, Scully brings new attention to complex ethical questions surrounding disability. Impairment is variously considered as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. In this way, disability is joined to the general late-twentieth century trend of attending to difference as a significant and central axis of subjectivity and social life.