Within the past two decades, dramatic advances in medical technology have led to a complete restructuring of medical care services for pregnant women and their newborns. Regionalization provides a full accountant of this new system known as regionalized perinatal care. Perinatologists, epidemiologists, public health administrators, and anyone involved with maternal-child care will find in this book, practical answers to their questions.

This book contains a series of articles, written by international experts in the fields of intellectual disability and quality of life, that explore a broad range of issues that impact on the quality of life of people with intellectual disabilities and their families. The book commences with a general discussion on defining quality of life and family quality of life and the appropriateness of using these constructs in the field of intellectual disability, and is followed by an analysis on the effects of living arrangements and employment on quality of life. The book concludes with discussions on the unique issues facing children with intellectual disabilities and people living in developing countries and the effect these issues have upon their quality of life.

The editors of this remarkable volume have collected 18 essays by humanists about Acquired Immune Deficiency Syndrome. AIDS seems to seek out as its victims the weakest and already victimized, writes Albert R. Jonsen, describing the inhumanity of this disease. Jonsen states that scientists have already fashioned a language for describing the disease in objective, clinical terms. What is needed now is a language to describe the human experience and instruct us on how to live humanely while AIDS is among us. To help construct this language, this collection examines AIDS from the perspective of the humanities: History can recall past experience for our instruction, Philosophy can define terms such as welfare, freedom, health, and disease, that guide our discourse, and Literature can reveal the images that shape the social reality of AIDS. Editors Eric T. Juengst and Barbara Koenig begin this study by delineating six interpretations of AIDS. Their aim is to demonstrate the many ways in which AIDS is viewed by society. The book is then divided into three parts. Part One examines how our current knowledge of AIDS was generated and how this knowledge is interpreted. Part Two explores the meaning of AIDS for health professionals and the ethical issues it can raise. Part Three examines public policy and AIDS. The contributors clarify and correct definitions, recall analogous incidents in our history and draw values and principles out of the obscurity of emotions and into the light of reason. divided into three parts. Part One examines the current knowledge of AIDS and how this knowledge is interpreted. Part Two explores the meaning and perceptions of AIDS in the medical community. Part Three examines public policy and AIDS. The contributors clarify and correct definitions, recall analogous incidents in our history and draw values and principles out of the obscurity of emotion and into the light of reason.

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.

This book traces the development of paid work for visually impaired people in the UK from the 18th century to the present day. It gives a voice to visually impaired people to talk about their working lives and documents the history of employment from their experience, an approach which is severely lacking in the current literature about visual impairment and employment. By analysing fifty in-depth face-to-face interviews with visually impaired people talking about their working lives (featuring those who have worked in traditional jobs such as telephony, physiotherapy and piano tuning, to those who have pursued more unusual occupations and professions), and grouping them according to occupation and framed by documentary, historical research, these stories can be situated in their broader political, economic, ideological and cultural contexts. The themes that emerge will help to inform present day policy and practice within a context of high unemployment amongst visually impaired people of working age. It is part of a growing literature which gives voice to disabled people about their own lives and which adds to the growing academic discipline of disability studies and the empowerment of disabled people.

This book recounts the dramatic story of the transformation of the Iowa Commission for the Blind from a verifiably ineffective service agency to perhaps the most outstanding and effective adult service program in the nation in the span of 10 short years. What happened in Iowa was revolutionary, and the character of work with the blind in America and around the world was altered forever - the alternative civil rights - based service model worked. Using Kenneth Jernigan's own writings of Board meeting minutes, reports, and letters, I present the details of the remarkable story from an activist's point of view.

Originally published between 1973 and 1990, this collection reissues twelve books that focus on the lives of children with mental and physical disabilities. Together, the books reflect research being done in the period and look at the challenges individuals, families, and professionals faced at that time. Topics covered include caring for children with disabilities, inclusion, and coping with particular disabilities.

This is the first book to challenge the concept of paid work for disabled people as a means to 'independence' and 'self determination'. Recent attempts in many countries to increase the employment rates of disabled people have actually led to an erosion of financial support for many workless disabled people and their increasing stigmatisation as 'scroungers'. Led by the disability movement's concern with the employment choices faced by disabled people, this controversial book uses sociological and philosophical approaches, as well as international examples, to critically engage with possible alternatives to paid work. Essential reading for students, practitioners, activists and anyone interested in relationships between work, welfare and disability.

This NIH-supported study of HIV's physical and psychosocial impacts offers both practical and inspiring accounts of how individuals living with HIV respond and cope with the disease and its progressive stages and impacts. The longitudinal approach of the research and the rich resources offered by extensive interviews with the persons with HIV and those closest to them avail the reader of insights and responses that should improve others' coping and caring abilities.

The author's professional experience and extensive research informs the work throughout and fashions a remarkable and moving synthesis of the themes that will help those living with AIDS as well as all who relate to them. From the first awareness of infection to coping with bereavement, this book honestly, sensitively, and substantively addresses the essential concerns that any and all who are touched by the HIV pandemic must reflect on.

Drawing upon qualitative material from parents and professionals, including ethnography, narrative inquiry, interviews and focus groups, this book brings together feminist and critical disability studies theories.

Who determines whether persons are disabled and eligible to receive the billions of dollars that are awarded in benefits under federal disability programs today in the United States? What kinds of standards are applied in making awards to millions of applicants? And how are disability determinations made and claims adjudicated? Frank S. Bloch provides a careful study of disability determinations in five major federal programs. His findings, models, and calls for reform, including the greater use of medical personnel, should interest those who want to know more about the medical-legal issues relevant to disability determination, the many factors that impact on disability decisionmaking, and the administrative process for making disability decisions. This survey covers the disability determination process in U.S. social security, railroad retirement, civil service, veteran, and black lung disability programs at the federal level. Dr. Bloch defines various standards, key issues, the current use of medical personnel and models for their fuller use and for reforming the disability determination process.

Disability and the Victorians brings together in one collection a range of topics, perspectives and experiences from the Victorian era that present a unique overview of the development and impact of attitudes and interventions towards those with impairments during this time. The collection also considers how the legacies of these actions can be seen to have continued throughout the twentieth century right up to the present day. Subjects addressed include deafness, blindness, language delay, substance dependency, imperialism and the representation of disabled characters in popular fiction. These varied topics illustrate how common themes can be found in how Victorian philanthropists and administrators responded to those under their care. Often character, morality and the chance to be restored to productivity and usefulness overrode medical need and this both influenced and reflected wider societal views of impairment and inability. -- .

Now students, general readers, advocates, rehabilitation professionals, and others seeking to learn more about the history and progress of the disability rights movement can turn to a valuable new reference book, The ABC-CLIO Companion to the Disability Rights Movement. The book is designed as a general introduction to the many varied influences on the growth of this movement, including notable individuals, some of whom will be familiar to general readers, while others remain virtually unknown outside of the communities they have affected. Here, through fascinating biographical narratives, their contributions are highlighted. Nearly 500 alphabetically arranged entries explore landmark laws and court cases, prominent figures, historic events, issues, notable programs, key concepts, and centers of disability culture and education. With a detailed chronology, extensive cross-referencing, illustrations, and a subject index, this volume is an exceptionally useful reference for anyone seeking to better understand the people and events shaping the American disability rights movement.

Disability is an increasingly vital contemporary issue in British social policy and particularly so in the area of education. "Education, Disability and Social Policy" brings together for the first time unique perspectives from leading thinkers including senior academics, opinion formers, policy makers and school leaders to explore these issues. Key issues included are: the implications of the law and international human rights frameworks; what these developments in policy will mean for schools and school leaders; how Governments can ensure that disabled children and young people are benefiting from wider efforts to tackle inequalities in the education system, such as widening access to higher education; what changes are needed in the design of the curriculum and qualifications; and, what needs to be done for children who are being failed by the current education system, including those with uncertain futures or children with Autism. The book is a milestone in social policy studies, of enduring interest to students, academics, policy makers, parents and campaigners alike.

The study of disability and its clinical treatment has become exponentially more complex as ever more interventions are developed that increase the life span. Consequently, developmental challenges facing people with disabilities and their families change throughout a lifetime.Unlike other texts, which concentrate only on the childhood years, "Disability and the Family Life Cycle" covers the entire life span within the family context, emphasizing maturational issues, with each chapter focusing on a different period of life. "Disability and the Family Life Cycle" is the only book to cover such topics as adult sons and daughters with disabilities, the developmental needs of the disabled elderly, and the needs of spouses and siblings.

At least one in seven people are thought to be neurodivergent. So what exactly is neurodiversity? What does 'executive functioning' mean? What are 'spiky profiles'? In this simple guide, expert speaker and trainer Daniel Aherne provides a clear introduction to neurodiversity and the four most common neurodivergent identities of autism, ADHD, dyslexia and dyspraxia. Using an analogy of a cactus needing a desert to grow in, he emphasises the importance of getting the environment right for neurodivergent people, rather than expecting them to adapt to the neurotypical world. Daniel, who himself has ADHD, also explains how neurodivergent people often have great strengths alongside areas of difficulty, and writes about the interplay between diagnoses, as well as unpacking tricky concepts such as working memory, sensory processing, communication differences and more. Busting common misconceptions and setting out simple tips and guidance for supporting the neurodivergent people around you, whether among your family, friends or at your school, college or workplace - or if you yourself are ND and want to improve the understanding of others - this essential guide will help us all celebrate neurodiversity and foster more inclusive communities.

This novel treats the two themes of incurable diseases and euthanasia at various levels to bring into focus a web of dense arguments legal and medical woven together that never tire the readers in their attempts to grapple with issues of human suffering, disease and death and its over-arching subject of sympathy, pity and humanity. To lend credence to all the impressive arguments, the novel draws parallels from real life situations and cases that made possible a debate on physician-assisted suicides and importance of human dignity and right to life and death.

View the Table of Contents. Read the Introduction.

"The writings of Rubin, Mukhopadhyay, and all of the contributors are testament to the need to embrace a 'disability consciousness' in seeking educational and therapeutic options for autistic persons so that they can achieve their full potential. While Biklen refrains from extensive analysis of his contributors' words, his book is truly valuable in its straightforward presentation of the voices of autistic persons speaking not only for but as themselves."
--"Disability Studies Quarterly"

"Disagrees with the common picture of autism, presenting chapters written by those with autism themselves--including those considered most severely disabled within the world of autism--to present a personalized view of how autism is experienced by those diagnosed. . . . A 'must' for any who understand the autistic experience."
--"Bookwatch"

"Biklen's tenacity is to be admired."
--"CHOICE"

aThe prevailing view of autism and disability is redefined in this beautifully written book. Can you ask for more than to inform, inspire, challenge, and help to create new ways of understanding? "Autism and the Myth of the Person Alone" forces us to confront misunderstanding, misperceptions, and lack of knowledge, and to rethink disability and autism. It demands that we embrace people who act, communicate, and socialize differently. I love this book!a
--Jan Nisbet, Director, Institute on Disability

aAustism and the Myth of the Person Alone is one of those rare professional books that causes one to pause and consider what it tells us about our literature, our field, and, perhaps, ourselves...Biklen has given us a fascinating, thoughtful and, most important, essential book by including insights, experiences, and perspectives of individuals with autism to add to the canon.a
--"American Association on Mental Retardation"

Autism has been defined by experts as a developmental disorder affecting social and communication skills as well as verbal and nonverbal communication. It is said to occur in as many as 2 to 6 in 1,000 individuals. This book challenges the prevailing, tragic narrative of impairment that so often characterizes discussions about autism.

Autism and the Myth of the Person Alone seriously engages the perspectives of people with autism, including those who have been considered as the most severely disabled within the autism spectrum. The heart of the book consists of chapters by people with autism themselves, either in an interview format with the author or written by themselves. Each author communicates either by typing or by a combination of speech and typing. These chapters are framed by a substantive introduction and conclusion that contextualize the book, the methodology, and the analysis, and situate it within a critical disability studies framework. The volume allows a look into the rich and insightful perspectives of people who have heretofore been thought of as uninterested in the world.

In this accessible introduction to the study of Disability Arts and Culture, Petra Kuppers foregrounds themes, artists and theoretical concepts in this diverse field. Complete with case studies, exercises and questions for further study, the book introduces students to the work of disabled artists and their allies, and explores artful responses to living with physical, cognitive, emotional or sensory difference. Engaging readers as cultural producers, Kuppers provides useful frameworks for critical analysis and encourages students to explore their own positioning within the frames of gender, race, sexuality, class and disability. Comprehensive and accessible, this is an essential handbook for undergraduate students or anyone interested in disabled bodies and minds in theatre, performance, creative writing, art and dance.

In Matthew, Disability, and Stress: Examining Impaired Characters in the Context of Empire, Jillian D. Engelhardt examines four Matthean healing narratives, focusing on the impaired characters in the scenes. Her reading is informed by both empire studies and social stress theory, a method that explores how the stress inherent in social location can affect psychosomatic health. By examining the Roman imperial context in which common folk lived and worked, she argues that attention to social and somatic circumstances, which may have accompanied or caused the described disabilities/impairments, destabilizes readings of these stories that suggest the encounter with Jesus was straightforwardly good and the healing was permanent. Instead, Engelhardt proposes various new contexts for and offers more nuanced characterizations of the disabled/impaired people in each discussed scene, resulting in ambiguous interpretations that de-center Jesus and challenge able-bodied assumptions about embodiment, disability, and healing.

'...this book makes a cogent yet impassioned argument that the discourse of care and caring is inappropriate...It deserves to be widely read, discussed and acted upon.' - Journal of Gender Studies;'The author...has produced a piece of research that not only needs to be read and acted upon by as many people as possible, but which is written in a style that is digestible and enjoyable to read.' - Jim Thomas, Nursing Times;'This is the clearest, most compelling book on what disabled people want from 'community care' that I have ever read,...it is destined to become one of the most influential pieces of writing in this area.' - S. Baldwin, Director, Social Policy Research Unit, York 'This is an important study which examines independent living both as the expressed wish of disabled people and as a central objective of Government policy...Let's hope all those involved in community care don't just read it but make sure it changes their provision and practice.' - Michael Oliver, Professor of Disability Studies, University of Greenwich 'This is quite simply a marvellous text. It will boost the morale of disabled people, and widen the thinking of non-disabled policy-makers and professional

The first volume presents a collection of exciting papers exploring several new areas of disability research. The contributions include: examination of the media representation of disability and coverage of disability policy issues which gives an understanding of the far reaching impact of the fourth estate; an historical analysis of the correspondence between the identifier of Down syndrome and Darwin that lends insights into the development of interpretations of mental retardation particularly Down syndrome as a throwback to the more primitive nature of man; analysis of hospital discharge data which demonstrates that persons with chronic conditions and impairments are more likely than those without to need hospitalization for injuries resulting from violence; and an overview of voting behavior among persons with disabilities. Subsequent volumes will focus on specific subjects related to disability issues.