In a readable and highly accessible ethnographic account that is shaped by the stories of families and the voices of parents, De Wolfe examines how parents of children with autism navigate the educational and medical systems, understand their own and their children's bodies, and support and educate one another.

Leutz and his colleagues offer the most practice-oriented and realistic assessment of how chronically ill elders are being served at the community level. They analyze options and opportunities open to policy makers and practitioners relative to long-term care in the community environment where so many elders want to be. In the process, the authors evaluate the range of needs, the importance of gender and cultural differences, and the effectiveness of Medicare and Medicaid as entitlement strategies.

Community care constitutes a major gap in the nation's health-care system. The authors show that there are many persuasive reasons to build, staff, manage, and pay for high quality community-care systems. Such programs are demonstrated to be affordable and to meet better the needs of a large percentage of elders who require long-term care. The authors set forth goals for community-care systems and criteria for assessment. This timely analysis, coupled with practical, socially compelling recommendations, responds effectively to the realities of an aging population and the great public policy and related fiscal concerns.

This collection explores the historical origins of our modern concepts of intellectual or learning disability. The essays, from some of the leading historians of ideas of intellectual disability, focus on British and European material from the Middle Ages to the late-nineteenth century and extend across legal, educational, literary, religious, philosophical and psychiatric histories. They investigate how precursor concepts and discourses were shaped by and interacted with their particular social, cultural and intellectual environments, eventually giving rise to contemporary ideas. Intellectual disability is essential reading for scholars interested in the history of intelligence, intellectual disability and related concepts, as well as in disability history generally. -- .

This volume addresses a range of philosophical and ethical issues in adapted physical activity and disability sports participation more broadly. It is comprised of a range of essays by international scholars whose backgrounds embrace different traditions of philosophy, pedagogy and adapted physical activity.

The principal aim of the symposium was to open up and critically explore a range of conceptual and ethical issues and perspectives that have arisen with respect to the engagement of persons with dis/abilities in a range of physical activity contexts including, but not exclusively located in, mainstream sporting activities.

This book was published as a special issue in Sport, Ethics and Philosophy.

This volume offers a comprehensive examination of current theory, research, and practice concerning people with serious mental illness and their families. There are presently many exciting developments under way, as professional practice is reformulated to emphasize the contributions of psychologists to the treatment of mental illness and the satisfactions that can accompany clinical work with the population. The current era is a transitional one in many respects, with significant changes in mental health policies and priorities, and in clinical training and practice. This work charts these new developments and explores their implications for mental health professionals.

Hoop Dreams on Wheels is a life-history study of wheelchair athletes associated with a premier collegiate wheelchair basketball program. The book, which grapples with the intersection of biography and history in society, situates the study in broader context with background on the history and sociology of disability and disability sports. It documents the development and evolution of the basketball program and tells the individual life stories of the athletes, highlighting the formative interpersonal and institutional experiences that influenced their agentive actions and that helped them achieve success in wheelchair sports. It also examines divisions within the disability community that reveal both empowering and disempowering aspects of competitive wheelchair athletics, and it explores some of the complexities and dilemmas of disability identity in contemporary society. The book is intended to be read by a general audience as well as by students in college courses on disability, sports, social problems, deviance, medical sociology and anthropology, and introductory sociology. It also will be of interest to scholars in the sociology of disability, sociology of sports, and medical humanities, as well as life-history researchers and professionals in the fields of physical education, therapeutic recreation, and rehabilitative counseling.

"Presenting a cartographic journey into the world of the production(s) of disability, this book examines embodiment, transhumanism, subjectivity, technology and jurisprudence. It concerns matters of order/disorder and the normal and pathological, and explores the way stories about wholeness, health, enhancement and perfection are told"--Provided by publisher.

This edited volume foregrounds Disability Critical Race Theory (DisCrit) as an intersectional framework that has informed scholarly analyses of racism and ableism from the personal to the global-offering important interventions into theory, practice, policy, and research. The authors offer deep personal explorations, innovative interventions aimed at transforming schools, communities, and research practices, and expansive engagements and global conversations around what it means for theory to travel beyond its original borders or concerns. The chapters in this book use DisCrit as a springboard for further thinking, illustrating its role in fostering transgressive, equity-based, and action-oriented scholarship. This book was originally published as a special issue of the journal, Race Ethnicity and Education.

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.

"A patient is standing in the middle of the river. He gazes across the water to the city and the mountain above where the sun is setting. His back is turned to the hospital. The nurses are waiting for him patiently on the river bank. He seems uncertain whether to cross the river or to return. There is no danger. He is on the edge, in an in-between space, as is the hospital where I have worked as a specialist psychiatrist for over twenty-five years."

For many of us, what lies beyond conventional portrayals of mental illness is often shrouded in mystery, misconception and fear. Dr Sean Baumann spent decades as a psychiatrist at Valkenberg Hospital and, through his personal engagement with patients’ various forms of psychosis, he describes the lived experiences of those who suffer from schizophrenia, depression, bipolar and other disorders.

The stories told are authentic, mysterious and compelling, representing both vivid expressions of minds in turmoil and the struggle to give form and meaning to distress. The author seeks to describe these encounters in a respectful way, believing that careless portrayals of madness cause further suffering and perpetuate the burden of stigma.

Baumann argues cogently for a more inclusive way of making sense of mental health. With sensitivity and empathy, his enquiries into the territories of art, psychology, consciousness, otherness, free will and theories of the self reveal how mental illness raises questions that affect us all.

Madness is illustrated by award-winning artist Fiona Moodie.

This collection centres on the experiences of disabled children and young people and aims to develop theories about their childhoods. The powerful first-hand accounts by disabled children, family members and reflections by disabled adults are aimed to inspire the reader to think and, perhaps, act in positive and productive ways about all children's lives. The authors oppose the historical global imposition of problematic views of disability and childhood and offer open discussion of responsive and ethical research approaches. New ways of thinking about disabled children's childhoods in a global context demand poverty reduction and approaches that support families and communities to recognise the contributions disabled children make.

'Patricia Lockwood is the voice of a generation' Namita Gokhale 'A masterpiece' Guardian 'I really admire and love this book' Sally Rooney 'An intellectual and emotional rollercoaster' Daily Mail 'I can't remember the last time I laughed so much reading a book' David Sedaris 'A rare wonder . . . I was left in bits' Douglas Stuart * WINNER OF THE DYLAN THOMAS PRIZE 2022 * * SHORTLISTED FOR THE BOOKER PRIZE 2021 * * SHORTLISTED FOR THE WOMEN'S PRIZE FOR FICTION 2021 * * A BBC BETWEEN THE COVERS BOOK CLUB PICK * ______________________________________________ This is a story about a life lived in two halves. It's about what happens when real life collides with the increasing absurdity of a world accessed through a screen. It's about living in world that contains both an abundance of proof that there is goodness, empathy, and justice in the universe, and a deluge of evidence to the contrary. It's a meditation on love, language and human connection from one of the most original voices of our time. ______________________________________________ 'An utterly distinctive mixture of depth, dazzling linguistic richness, anarchic wit and raw emotional candour' Rowan Williams A 2021 Book of the Year: Sunday Times, Guardian, Daily Mail, Telegraph, Evening Standard, The Times, New Statesman, Red, Observer, Independent, Daily Telegraph

Families of children with special health needs frequently cite difficulties in their communications with physicians and other medical professionals. Indeed, parents of high-risk, chronically ill, and disabled infants often regard interactions with health care providers as one of the most stressful parts of their early experiences with their children.

This volume was designed to present a variety of medical education approaches used to overcome this problem. After providing an overview of some of the difficulties faced by physicians and families of children with special health needs in their interactions with one another, the volume examines a number of useful medical education models. The models and viewpoints presented include those of physicians, early intervention professionals, professionals with backgrounds in education, psychology, and sociology, and parents. This volume is invaluable to those involved in designing and evaluating medical education approaches, and those developing public policy for children and the family.

Under the Americans with Disabilities Act, organizations that fail to provide reasonable accommodations to employees with mental disabilities may be subject to penalties and punitive damages. The Act does not, however, provide useful guidelines to help organizations comply--a gap that Dr. Fielder's book now fills. This manual shows that compliance is not difficult or expensive. In clear, concise language, it acquaints management with mental diagnoses, impairments, disabilities, the myths of mental illness and its affect on job performance, and provides samples of workplace accommodations and compliance plans. Practical and readable, the book is intended for management of organizations with 15 or more employees, their human resource staffs and employee assistance professionals, and legal counsel.

Brantlinger discusses the current medical and legal trends in sterilization with special emphasis on people with disabilities. She explores the issues surrounding sterilization decisions from the perspectives of judges, lawyers, social workers, doctors, family planners, as well as the families and individuals themselves. Woven throughout the book are case studies of individuals ranging from mild to severe retardation.

Brantlinger discusses the current medical and legal trends in sterilization with special emphasis on people with disabilities. She explores the issues surrounding sterilization decisions from the perspectives of judges, lawyers, social workers, doctors, family planners, as well as the families and individuals themselves.

Woven throughout the book are case studies of individuals ranging from mild to severe retardation. She illustrates how ethical issues related to sterilization are framed and which moral values are called upon during decision-making. She ends with guidelines for decision-making. As the most comprehensive and up-to-date work on the subject, this book will be invaluable to professionals in the social services and mental health fields as well as researchers in law, special education, social work, and public health. Individuals confronting these concerns will find the volume instructive as well.

Building on work in feminist studies, queer studies and critical race theory, this volume challenges the universality of propositions about human nature, by questioning the boundaries between predominant neurotypes and 'others', including dyslexics, autistics and ADHDers. This is the first work of its kind to bring cutting-edge research across disciplines to the concept of neurodiversity. It offers in-depth explorations of the themes of cure/prevention/eugenics; neurodivergent wellbeing; cross-neurotype communication; neurodiversity at work; and challenging brain-bound cognition. It analyses the role of neuro-normativity in theorising agency, and a proposal for a new alliance between the Hearing Voices Movement and neurodiversity. In doing so, we contribute to a cultural imperative to redefine what it means to be human. To this end, we propose a new field of enquiry that finds ways to support the inclusion of neurodivergent perspectives in knowledge production, and which questions the theoretical and mythological assumptions that produce the idea of the neurotypical. Working at the crossroads between sociology, critical psychology, medical humanities, critical disability studies, and critical autism studies, and sharing theoretical ground with critical race studies and critical queer studies, the proposed new field - neurodiversity studies - will be of interest to people working in all these areas.

A unique manual for managers in health care facilities, this volume contains model policies and procedures found through experience to be useful in helping managers manage their work force while at the same time enhancing the employee relations atmosphere. The policies and procedures are designed so that they can be incorporated into company personnel policy manuals as is or modified and adapted to meet the needs of individual organizations. Included are guidelines for promoting fairness and consistency, as well as those aimed at enhancing employee morale and effectiveness. Throughout, the authors have written the manual with a view toward preventing potential legal problems before they begin.

The volume begins with a section explaining how to use the various sections of the manual, how to customize where necessary to reflect organizational goals, how to develop an employee handbook, and how to add additional information such as organization history and structure. There follow comprehensive sections that deal with virtually every aspect of employment policies, wages and overtime, benefits policies, the employee and his or her job, employee conduct, and safety and security. Included are policies to deal with such increasingly difficult problems as drugs and alcohol abuse, sexual harassment and discrimination, terminations and layoffs, insurance, and employment of minors as well as basic employment policies ranging from recruitment and hiring to vacations and sick leaves.

Increase your awareness of the concerns facing the black disabled community! Disability and the Black Community addresses physical, mental, and learning disabilities experienced across age, gender, and ethics groups by the black race in the United States. This unique book works to increase understanding and awareness of those working with the disabled by mobilizing advocates, providing alternatives for successful intervention and planning, and encouraging research in disability and rehabilitation. A distinguished panel of researchers and practitioners provide commentary on topics that include selected physical disabilities, disabled children learning and program concerns, welfare reform, public housing issues, domestic violence, and disability curriculum contentall in accordance with the broadening of the definition of disability as supported by the American Disabilities Act. Disability and the Black Community raises the level of understanding and awareness of the complex and diverse concerns facing the disabled and their families in the community and the workplace. The book is at once motivational, influential, and empowering, examining social and political issues that compound the ordeals confronting the black disabled. Topics addressed include: learning disabilities, academic achievements, and mental health issues of children health disparities and access to care welfare reform, disability, and race practice, program, and curriculum models and much more! Disability and the Black Community is an essential resource for health professionals and advocates who work with the black disabled. The book keeps practitioners up to date on what is needed in terms of funding, facilities, and resources in order to keep the larger society and significant resource systems appraised of the needs of the disabled.

This is a comparative analysis of the micro and macro characteristics of self-help organizations of people with disabilities (SHOPs) in seven selected countries and territories in Asia, namely China Mainland, Hong Kong, Japan, the Philippines, Taiwan, Thailand, and Vietnam. Since the 1980s, SHOPs have prospered in this region and were given a major role in the United Nations' forum and the International Year of Disabled Persons in 1981. The analysis shows the differences among the SHOPs in terms of the complexity of their structure, government's affirmative policy, legislation, and leadership qualities. These differences are due to the complex interplay among factors at local, national, and international levels.

SHOPs in this region present a rather homogenous perception in their organization, leadership, social inclusion, and globalization, despite the marked differences in their societies. SHOPs tends to be domocratic and consensual in nature, and led by elected members with assistance from paid professional and clerical support. The self-help organizations are positively regarded in these countries.

This volume brings together two parallel fields of interest. One is the understanding among psychologists and other social scientists of the limits to psychometric measurement, and the challenges in generating information about quality of life and wellbeing that enable comparison across time and place, at both individual and population levels. The second is the interest among anthropologists and others in the lived experience of chronic illness and disability, including the unpredictable fluctuations in perceived health and capability. Chronic conditions and physical impairments are assumed to impact negatively on people's quality of life, affecting them psychologically, socially and economically. While some of these conditions have declined in prevalence, as a result of prenatal diagnosis, early successful interventions, and changes in medical technology and surgery, many of these conditions are on the increase as a consequence of improved life-saving medication and technology, and greater longevity. 'Quality of life' is often used as an indicator for successful and high quality health services, and good access to medical attention and surgery - for hip replacements or laser surgery to improve vision, for instance. But it is also used as an argument against interventions, when such interventions are seen to prolong life for its own sake. Yet we also know that people vary their idea of quality as a result of the context of fluctuations in their own health status, the presence or absence of pain or discomfort, and as a result of variations in social and economic contextual factors. In exploring these questions, this volume contributes to emerging debates related to individual health outcomes, but also to the social and other individual determinants that influence everyday life. Understanding these broader contextual factors will contribute to our knowledge of the kinds of services, support systems, and infrastructure that provide people with good 'quality of life' and a sense of wellbeing, regardless of their physical health, capability and functioning. The volume includes scholars from all continents who have been encouraged to think critically, and to engage with the descriptive, methodological, social, policy and clinical implications of their work.

How can families of children with disabilities plan for lasting financial security at every stage of life? Find clear answers in The Special Needs Planning Guide, a step-by-step companion for parents as they progress through the complexities of planning for the future of their family and their child. Written by two financial planning experts who are also a parent and a sibling of a person with disabilities, and including contributions from a nationally recognized advocate, this bestselling how-to guide is now in its second edition. Revised, reorganized, and carefully updated to reflect current law, this book gives families the real-world advice, strategies, and actions needed to plan for both their future and the well-being and security of their child. With clarity and compassion, the authors guide families in addressing five critical factors involved in special needs planning- family and support, emotional, financial, legal, and government benefits factors-at every stage of their child's life, from birth through adulthood. Throughout the book, readers will learn from the stories and advice of other caregivers, get helpful planning pointers and key questions to answer, and take action with the chapter lists of Next Steps. To help families customize the information in this book for their specific needs, this new edition also offers a complete package of online resources, including a fillable Special Needs Planning Timeline, easy-to-use financial planning worksheets, and an in-depth Letter of Intent template families can use to map out their vision for their child's life. Informed by decades of personal and professional experience, this reader-friendly guidebook will help families educate themselves about financial planning, create a complete action plan for their future, and provide the knowledge and the tools they need to work toward a secure and full life for their child. WHAT'S NEW: Fully revised chapters and online resources A 10-step process that breaks complex planning into manageable tasks Letter of Intent now available as a fillable PDF Excel worksheets for easy planning New chapters on Foundational Financial Strategies and Tools, and Advanced Strategies and Special Circumstances Helpful information on ABLE accounts, housing options, and military Survivor Benefit Plans New planning tips, pointers, and case stories Guidance on creating a Team to Carry On beyond the parents' lifetimes SELECTED TOPICS COVERED: special needs trusts funding * trustee selection * insurance strategies * investment guidance * estate planning * legal settlements * government benefits, such as SSI, SSDI, and housing benefits * goal-setting * advocacy * hiring financial and legal professionals * sibling considerations * contributions of extended support networks * retirement plans * guardianship and less restrictive alternatives

Eliza Fricker gets it. Describing her perfectly imperfect experience of raising a PDA child, with societal judgements and internal pressures, it is easy to feel overwhelmed, resentful and alone. This book's comedic illustrations explain these challenging situations and feelings in a way that words simply cannot, will bring some much-needed levity back into PDA parenting. Humorous anecdotes with a compassionate tone remind parents that they are not alone, and they're doing a great job. If children are safe, happy, and you leave the house on time, who cares about some smelly socks? A light-hearted and digestible guide to being a PDA parent covering everything from tolerance levels, relationships and meltdowns to collaboration, flexibility, and self care to dip in and out as your schedule allows to help get to grips with this complex condition. This book is an essential read for any parent with a PDA child, to help better understand your child, build support systems and carve out some essential self care time guilt free.