In this period of upheaval of our nation's health care system, this timely work serves to increase awareness of and knowledge about the problems of societal living among the chronically disabled elderly. To meet the goal of optimal social functioning of the chronically disabled, past and present attitudes and practices of education, health care, and social service providers need to be examined and in many cases changed or discarded. Focusing on macro and micro contexts--and using examples to highlight actual experiences and processes--the need for a comprehensive approach to chronic disabling conditions is illustrated. This work has important implications for institutions of education in health and social sciences, policy makers in health care and social services, advocacy groups for the elderly and disabled, and individuals and families facing the care of the chronically disabled.

This book examines how intellectual disability is affected by stigma and how this stigma has developed. Around two per cent of the world's population have an intellectual disability but their low visibility in many places bears witness to their continuing exclusion from society. This prejudice has an impact on the family of those with an intellectual disability as well as the individual themselves and affects the well-being and life chances of all those involved. This book provides a framework for tackling intellectual disability stigma in institutional processes, media representations and other, less overt, settings. It also highlights the anti-stigma interventions which are already in place and the central role that self-advocacy must play.

Uses literature to understand and remake our ethics regarding nonhuman animals, old human beings, disabled human beings, and cloned posthumans Literary Bioethics argues for literature as an untapped and essential site for the exploration of bioethics. Novels, Maren Tova Linett argues, present vividly imagined worlds in which certain values hold sway, casting new light onto those values; and the more plausible and well rendered readers find these imagined worlds, the more thoroughly we can evaluate the justice of those values. In an innovative set of readings, Linett thinks through the ethics of animal experimentation in H.G. Wells's The Island of Doctor Moreau, explores the elimination of aging in Aldous Huxley's Brave New World, considers the valuation of disabled lives in Flannery O'Connor's The Violent Bear It Away, and questions the principles of humane farming through reading Kazuo Ishiguro's Never Let Me Go. By analyzing novels published at widely spaced intervals over the span of a century, Linett offers snapshots of how we confront questions of value. In some cases the fictions are swayed by dominant devaluations of nonnormative or nonhuman lives, while in other cases they confirm the value of such lives by resisting instrumental views of their worth-views that influence, explicitly or implicitly, many contemporary bioethical discussions, especially about the value of disabled and nonhuman lives. Literary Bioethics grapples with the most fundamental questions of how we value different kinds of lives, and questions what those in power ought to be permitted to do with those lives as we gain unprecedented levels of technological prowess.

In this book we are interested in patterns of education, rehabilitation service, socialization, and ideas about blindness that in large part produce the above-mentioned distinct patterns. We will examine the economic interests of professional groups and the patterns of domination and subordination, which are present in most rehabilitation relationships. Our central tenet is that the behavior of blind people is not a product of the physical condition of blindness or the amount of residual vision a blind person has. Rather, the behavior of blind people in our society is governed by socialization. Blindness is a social problem arising from erroneous, socially constructed negative beliefs about the capacities of blind people involuntarily assimilated from the broader society by the blind. People learn to live independently or they learn to be dependent. The reactions of parents, teachers, peers, the health professionals, rehabilitation counselors and the general public have defined the choices available to blind people. This is the case in every culture and society around the world. Differences result from different cultural values, levels of economic development, and historical traditions.

The Story of My Life (1903) is the autobiography of Helen Keller. Written while she was an undergraduate student at Radcliffe College in Cambridge, Massachusetts, The Story of My Life was a joint effort between Keller, her teacher Anne Sullivan, and Anne's husband John Macy. "Gradually I got used to the silence and darkness that surrounded me and forgot that it had ever been different, until she came-my teacher-who was to set my spirit free. But during the first nineteen months of my life I had caught glimpses of broad, green fields, a luminous sky, trees and flowers which the darkness that followed could not wholly blot out. If we have once seen, 'the day is ours, and what the day has shown.'" After losing her hearing and sight as an infant, Helen Keller received a life-changing education from her dedicated teacher Anne Sullivan, herself vision impaired. As she learned to communicate through signs, she found an innate determination to surpass the expectations of those around her, eventually becoming the first deafblind person to obtain her Bachelor of Arts. Her autobiography is a rich retelling of the first twenty-one years of Keller's life, a period marked by tragedy and miracle alike, shaping her into one of the twentieth century's leading civil rights activists and public speakers. With a beautifully designed cover and professionally typeset manuscript, this edition of Helen Keller's The Story of My Life is a classic of American literature reimagined for modern readers.

"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.

Historically, interventions designed to impact the lives of disabled people were predicated upon deficits-based models of disability. This began to change with the introduction of World Health Organization (WHO) frameworks, particularly the International Classification of Function (ICF), that emphasized that disability could only be understood in the context of interactions among health, environmental factors, and personal factors and by examining the impact of such factors on a person's activities and participation. The ICF identified personal factors as among the elements of a social-ecological model of disability but did not provide an extensive taxonomy of what constitutes such factors. Understanding Disability examines personal factors that come from the field of positive psychology and, as such, to begin to identify and build strengths-based approaches to promoting the full participation, dignity, and well-being of disabled people.

Bringing together scholars from film and television studies, media and cultural studies, literary studies, medical humanities, and disability studies, Discourses of Care collectively examines how the analysis of media texts and practices can contribute to scholarship on and understandings of health and social care, and how existing research focusing on the ethics of care can inform our understanding of media. Featuring a critical introductory essay and 13 specially commissioned original chapters, this is the first edited collection to address the relationship between media and the concept and practice of care and caregiving. Contributors consider the representation of care and caregiving through a range of forms and practices - the television documentary, photography, film, non-theatrical cinema, tabloid media, autobiography, and public service broadcasting - and engage with the labour, as well as the practical and ethical dimensions of media production. Together, they offer an original and wide ranging exploration of the various ways in which media forms represent, articulate and operate within caring relationships and practices of care; whether this is between individuals, communities as well as audiences and institutions.

This volume provides an informed review of the accomplishments of the Washington Group on Disability Statistics (WG) in the provision of international data and statistics on disability. It does so within the context of the UN Convention on the Rights of Persons with Disabilities. The volume includes a description of the development and testing of a short set of questions for Censuses, now used in approximately 29 countries and recommended in the U.N.'s Principles and Recommendations for Population and Housing Censuses: The 2020 Round, which includes disability as a core topic to be collected in censuses. It discusses the experiences of several countries on the use of the WG questions and how this has impacted on national agendas in the area of disability. It follows the development and testing of an extended set of questions for use in national surveys other than censuses and examines the challenges of translation and the importance of generating comparable question sets in different languages and within different cultures. It studies the examination of cognitive testing techniques in a variety of countries, and presents the results of the first round of censuses in 2010 in countries using the six question set. The volume includes discussions of the new development of question modules on a broad range of child disability and functioning, and the environmental contexts of participation that are part of the current work of the WG. In addition, it contains a reflection on the use of the WG's functionality approach to identifying disabilities by humanitarian agencies to identify disabilities in populations of displaced persons. A thoughtful conclusion addresses what the development of cross-nationally comparable data can mean for the improvement of circumstances for all persons with disabilities.

This handbook questions, debates and subverts commonly held assumptions about disability and citizenship in the global postcolonial context. Discourses of citizenship and human rights, so elemental to strategies for addressing disability-based inequality in wealthier nations, have vastly different ramifications in societies of the Global South, where resources for development are limited, democratic processes may be uncertain, and access to education, health, transport and other key services cannot be taken for granted. In a broad range of areas relevant to disability equity and transformation, an eclectic group of contributors critically consider whether, when and how citizenship may be used as a lever of change in circumstances far removed from UN boardrooms in New York or Geneva. Debate is polyvocal, with voices from the South engaging with those from the North, disabled people with nondisabled, and activists and politicians intersecting with researchers and theoreticians. Along the way, accepted wisdoms on a host of issues in disability and international development are enriched and problematized. The volume explores what life for disabled people in low and middle income countries tells us about subjects such as identity and intersectionality, labour and the global market, family life and intimate relationships, migration, climate change, access to the digital world, participation in sport and the performing arts, and much else.

Childhood disabilities, particularly cognitive disabilities, are on the rise yet social programs and services to help US families respond to disabilities are not. Many families turn to grandparents for assistance juggling work, family responsibilities, and specialized therapies. This book is based on in-depth interviews with grandparents who are providing at least some care to grandchildren with disabilities. The analyses will help to better understand (1) under what conditions grandparents provide care and support, (2) what types and intensities of care and support grandparents provide, and (3) the impact of that care and support on grandparents' social, emotional, physical, and financial wellbeing. In this fascinating and provocative book, Madonna Harrington Meyer and Ynesse Abdul-Malak take readers on a deep dive into the complex lives of grandparents who care for their disabled grandchildren. In Grandparenting Children with Disabilities, their interviews reveal the joy, meaning, and purpose grandparents find in caregiving, the challenges and frustrations they encounter, and the many ways they compromise their own health and well-being for the sake of their grandchildren. Drawing from theories of cumulative inequality and from their deep knowledge of the US policy context, the authors lay bare the systemic failures that leave families of children with disabilities without adequate support and that place the most vulnerable among them at grave physical, emotional, and financial risk... Jane McLeod, Provost Professor, Indiana University Grandparents in the U.S. already take on far more parenting responsibilities as compared to their peers in other countries. Grandparenting Children with Disabilities demonstrates that the intensity of these responsibilities is compounded for those whose grandchildren have disabilities given limited policy supports and a society still largely unaccommodating to those with disabilities. This book beautifully navigates the tension between the love these grandparents have for their grandchildren and the challenges they face caring for them. Pamela Herd, Professor, Georgetown University Grandparenting Children with Disabilities offers important insights about the lived experience of older adults who care for and care about their grandchildren...The authors skillfully integrate the stories they tell with consideration of macro social structural influences and life course perspectives... I recommend it highly! Eva Kahana, Distinguished University Professor, Case Western Reserve

Using an autoethnographic approach, as well as multiple first-person accounts from disabled writers, artists, and scholars, Jan Doolittle Wilson describes how becoming disabled is to forge a new consciousness and a radically new way of viewing the world. In Becoming Disabled, Wilson examines disability in ways that challenge dominant discourses and systems that shape and reproduce disability stigma and discrimination. It is to create alternative meanings that understand disability as a valuable human variation, that embrace human interdependency, and that recognize the necessity of social supports for individual flourishing and happiness. From her own disability view of the world, Wilson critiques the disabling impact of language, media, medical practices, educational systems, neoliberalism, mothering ideals, and other systemic barriers. And she offers a powerful vision of a society in which all forms of human diversity are included and celebrated and one in which we are better able to care for ourselves and each other.

Disability and Disaster adds disaster research to the expanding area of disability studies. The book includes writings by international scholars and first-hand narratives from individuals with disabilities affected by disasters around the globe. Hazards described in these narratives include earthquakes, hurricanes, floods, fires, and war.

The formerly established medically-based idea of disability, with its charity-based approach to treatment and services, is being replaced by a human rights-based approach in which people with impairments are no longer considered medical problems, totally dependent on the beneficence of non-impaired people in society, but have fundamental rights to support, inclusion, and participation. This interdisciplinary book examines the diverse concerns that people with impairments face in the context of human rights, provides insights into new developments on important issues relating human rights to disability, and features new approaches and solutions to vital problems in the current debate.

Long Lives Are for the Rich is the title of a silent ominous program that affects the lives of millions of people. In all developed countries disadvantaged and, especially, poor people die much earlier than the most advantaged. During these shorter lives they suffer ten to twenty years longer from disabilities or chronic disease. This does not happen accidentally: health inequalities – including those between healthy and unhealthy life styles – are mainly caused by social inequalities that are reproduced over the life course. This crucial function of the life course has become painfully visible during its neoliberal reorganization since the early 1980s. Studies about aging over the life course, from birth to death, show the inhumane consequences as people get older. In spite of the enormous wealth that has been piled up in the US for a dwindling percentage of the population, there has been growing public indifference about the needs of those in jobs with low pay and high stress, but also about citizens from a broad middle class who can hardly afford high quality education or healthcare. However, this ominous program affects all: recent mortality rates show that all Americans, including the rich, are unhealthier and dying earlier than citizens of other developed countries. Moreover, the underlying social inequalities are tearing the population apart with nasty consequences for all citizens, including the rich. Although the public awareness of the consequences has been growing, neoliberal policies remain tempting for the economic and political elites of the developed world because of the enormous wealth that is flowing to the top. All this poses urgent questions of social justice. Unfortunately, the predominant studies of social justice along the life course help to reproduce these inequalities by neglecting them. This book analyzes the main dynamics of social inequality over the life course and proposes a theory of social justice that sketches a way forward for a country that is willing to invest in its greatest resource: the creative potential of its population.

From the disability rights advocate and creator of the #DisabledAndCute viral campaign, a thoughtful, inspiring, and charming collection of essays exploring what it means to be black and disabled in a mostly able-bodied white America. Keah Brown loves herself, but that hadn't always been the case. Born with cerebral palsy, her greatest desire used to be normalcy and refuge from the steady stream of self-hate society strengthened inside her. But after years of introspection and reaching out to others in her community, she has reclaimed herself and changed her perspective. In The Pretty One, Brown gives a contemporary and relatable voice to the disabled-so often portrayed as mute, weak, or isolated. With clear, fresh, and light-hearted prose, these essays explore everything from her relationship with her able-bodied identical twin (called "the pretty one" by friends) to navigating romance; her deep affinity for all things pop culture-and her disappointment with the media's distorted view of disability; and her declaration of self-love with the viral hashtag #DisabledAndCute. By "smashing stigmas, empowering her community, and celebrating herself" (Teen Vogue), Brown and The Pretty One aims to expand the conversation about disability and inspire self-love for people of all backgrounds.

Beckett's plays have attracted a striking range of disability performances - that is, performances that cast disabled actors, regardless of whether their roles are explicitly described as 'disabled' in the text. Grounded in the history of disability performance of Beckett's work and a new theorising of Beckett's treatment of the impaired body, Samuel Beckett and Disability Performance examines four contemporary disability performances of Beckett's plays, staged in the UK and US, and brings the rich fields of Beckett studies and disability studies into mutually illuminating conversation. Pairing original interviews with the actors and directors involved in these productions alongside critical analysis underpinned by recent disability and performance theory, this book explores how these productions emphasise or rework previously undetected indicators of disability in Beckett's work. More broadly, it reveals how Beckett's theatre compulsively interrogates alternative embodiments, unexpected forms of agency, and the extraordinary social interdependency of the human body.

The rising cost of illness and disability benefits are one of today's biggest social and labour market challenges. The promise of activation-oriented work disability policies was labour market engagement for all people, regardless of illness, injury or impairment. However, the reality has been more complex. The Science and Politics of Work Disability Policy addresses social and political economic contexts driving state work disability reform in 13 countries. In this first attempt to explain the history and future of work disability policy, this book asks new questions about work disability policy design, focus, and effects. It details how work disability policies have evolved with jurisdictions, why these take their current shape, and where they are heading. The well positioned authors draw on their insider knowledge and expertise in law, medicine, and social science to provide detailed case studies of their jurisdictions. This pathbreaking volume will be of interest to social security system policy makers, scholars, and students in the health and social sciences.

Drawing from long term ethnographic work and practice in Guatemala, this incisive and interdisciplinary text brings in perspectives from critical disability studies, postcolonial theory and critical development to explore the various interactions and dynamics between disability and extreme poverty in rural areas.

Phallacies: Historical Intersections of Disability and Masculinity is a collection of essays that focuses on disabled men who negotiate their masculinity as well as their disability. The chapters cover a broad range of topics: institutional structures that define what it means to be a man with a disability; the place of women in situations where masculinity and disability are constructed; men with physical and war-related disabilities; male hysteria, suicide clubs, and mercy killing; male disability in literature and popular culture; and more. All the authors regard masculinity and disability in the historical contexts of the Americas and Western Europe, with particular attention to the nineteenth and twentieth centuries. Taken together, the essays in this volume offer a nuanced portrait of the complex, and at times competing, interactions between masculinity and disability.

This book explores the intricate connections that link the current digitalization of manufacturing to our daily lives and identities as members of highly technologized societies. Based on extensive research on the prosthetics industry in Germany, the USA, Canada, and Haiti, the author demonstrates the socio-material construction of users, examining the ways in which the introduction of 3D printing changes how artificial limbs are designed, manufactured, distributed and used. Addressing questions surrounding the capacity of flexible production to afford greater diversity of user roles, and the likelihood of 3D printing allowing for open-source hardware and the democratization of production, the author presents a theory of digitalization that sheds light on the dynamics of industrial transformation and the future of use. An empirically grounded and conceptually informed study, The Socio-Material Construction of Users will appeal to researchers in the fields of sociology, science and technology studies and organization studies, as well as readers interested in 3D printing and the digitalization of society.

This edited collection explores the intersectionality of childhood and disability. Whereas available scholarship tends to concentrate on care-giving, parenting, or supporting and teaching children and young people with special educational needs and disabilities, the contributors to this collection offer an engaging and accessible insight into childhoods that are impacted by disability and impairment. The discussions cut across traditional disciplinary divides and offer critical insights into the key issues that relate to disabled children and young people's lives, encouraging the exploration of both disability and childhoods in their broadest terms. Dis/abled Childhoods? will be of interest to students and scholars across a range of disciplines including Special Educational Needs; Childhood Studies; Disability Studies; Youth Studies; and Health and Social Care.

The collective volume seeks to respond to these questions by exploring crip time in disability performance as both a concept and a phenomenon. Out of time has many different meanings, amongst them outmoded, out of step, under time pressure, no time left, or simply delayed. In the disability context it may also refer to resistant attitudes of living in "crip time" that contradict time as a linear process with a more or less predictable future. According to Alison Kafer, "crip time bends the clock to meet disabled bodies and minds." What does this mean in the disability arts? What new concepts of accessibility, crip futures, and crip resistance can be staged or created by disability performance? And how does the notion of "out of time" connect crip time with pandemic time in disability performance? The book tackles the topic from two angles: on the one hand from a theoretical point of view that connects performance analysis with crip and performance theory, on the other hand from a practice-based perspective of disability artists who develop new concepts and dramaturgies of crip time based on their own lived experiences and observations in the field of the performing and disability arts. The book gathers different types of text genres, forms and styles that mirror the diversity of their authors. Besides theoretical and academic chapters on disability performance the book also includes essays, poems, dramatic texts, and choreographic concepts that reflect upon the alternative knowledge in the disability arts.