Giving Voice To Profound Disability

Giving Voice to Profound Disability is devoted to exploring the lives of people with profound and multiple learning difficulties and disabilities, and brings together the voices of those best placed to speak about the rewards and challenges of living with, supporting and teaching this group of vulnerable and dependent people – including parents, carers and teachers. Along with their personal insights the book offers philosophical reflections on the status, role and treatment of profoundly disabled people, and the subjects discussed include: Respect and human dignity Dependency Freedom and human capabilities Rights, equality and citizenship Valuing people Caring for others The experience and reflections presented in this book illustrate the progress and achievements in supporting and teaching people with profound disabilities, but they also reveal the challenges involved in enabling them to develop their full potential. It is suggested, also, that these challenges apply not only to this group, but also to people who, through sickness, accident and old age, face equivalent levels of dependency and disability. Giving Voice to Profound Disability will be of interest to all those involved in the lives of severely and profoundly disabled people, including parents, carers, teachers, nurses, therapists, academics, researchers, students and policymakers.

Giving Voice to Profound Disability is devoted to exploring the lives of people with profound and multiple learning difficulties and disabilities, and brings together the voices of those best placed to speak about the rewards and challenges of living with, supporting and teaching this group of vulnerable and dependent people – including parents, carers and teachers. Along with their personal insights the book offers philosophical reflections on the status, role and treatment of profoundly disabled people, and the subjects discussed include: Respect and human dignity Dependency Freedom and human capabilities Rights, equality and citizenship Valuing people Caring for others The experience and reflections presented in this book illustrate the progress and achievements in supporting and teaching people with profound disabilities, but they also reveal the challenges involved in enabling them to develop their full potential. It is suggested, also, that these challenges apply not only to this group, but also to people who, through sickness, accident and old age, face equivalent levels of dependency and disability. Giving Voice to Profound Disability will be of interest to all those involved in the lives of severely and profoundly disabled people, including parents, carers, teachers, nurses, therapists, academics, researchers, students and policymakers.

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia. In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing literature with thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy. Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability.

Nearly twenty percent of adolescents have developmental disabilities, yet far too often they are marginalized within churches. Amplifying Our Witness challenges congregations to adopt a new, practice-centered approach to congregational ministry -- one that includes and amplifies the witness of adolescents with developmental disabilities. Replete with stories taken from Benjamin Conner's own extensive experience with befriending and discipling adolescents with developmental disabilities, Amplifying Our Witness Shows how churches exclude the mentally disabled in various structural and even theological ways Stresses the intrinsic value of kids with developmental disabilities Reconceptualizes evangelism to adolescents with developmental disabilities, emphasizing hospitality and friendship.

"Voices of thousands of American's with disabilities are hard to hear. Randy Russell shares how he is giving voice to those who cannot speak and how he came to stand tall for the rights of those with disabilities even as he himself is unable to stand-alone. Issues impacting the disabled are sorely ignored not from lack of sheer numbers, their population is larger than many minority groups. But, where other minority voice have mounted effective public policy, communication and advocacy programs the disabled community often lacks effective advocates. Randy Russell who was born with profound cerebral palsy has breached the highest offices in the land with his advocacy, both in Arizona and in Washington DC. An inspiration to so many, a congressman once exclaimed, "It's hard for anyone to turn Randy down." As a profoundly disabled individual, whose own grandmother advised the two year old be institutionalized, today Randy Russell's business card says he is an advocate and a motivational speaker. Read his story, meet Randy, his parents, siblings and the army of family members, teachers, therapists and health care experts who have aided him on his journey to independence."

Many people think that profound disability presents us with a real problem, often because it seems difficult to connect with someone who does not seem to think or act like us. Positioning profound disability in this way immediately sets up a ‘them’ and ‘us’, where the person with profound disability becomes the problematic ‘other’. Attempts to bridge the ‘them’ and ‘us’ risk reducing everyone to the same where disability is not taken seriously. In contrast to a ‘them’ and ‘us’, and negative connotations of the other found in the existentialist philosophies of writers like Sartre and Beauvoir, Pia Matthews argues for a return to a positive view of the other. One positive approach to the other, based on an ethics of relationship as championed by Levinas, seems to mitigate the other-ness of profound disability. However, this still makes the person with profound disability dependent on the ethical concern of the more powerful other. Instead, this book argues for return to a personalist philosophy of being offered by Mounier, Marcel, and Wojtyła, and deepened by participation, belonging, and the possibility of contributing to the good of all. This deepened philosophy of being gives a more solid foundation for people who are especially at the mercy of others. It will be of interest to all scholars and students of disability studies, philosophy and anthropology.

This book pushes the boundaries in the way we approach people with profound intellectual and multiple disabilities, and in how we work with them in education and research. While it is grounded in diverse theoretical frameworks and disciplines, the book coheres around a commitment to seeing people with profound intellectual and multiple disabilities as equal citizens who belong in our classrooms, research projects and community lives. Each section covers policy contexts, key ideas and recent research. Featuring contributions from around the world, the book incorporates established and new voices, different disciplines and experiences. Additionally, it includes pieces from family members of people with profound intellectual and multiple disabilities. Divided into three parts, the book explores three main topics: Belonging in education Belonging in research Belonging in communities Belonging for People with Profound Intellectual and Multiple Disabilities is an invaluable resource for scholars, professionals and postgraduate research students with an interest in children or adults with profound intellectual and multiple disabilities.

This unique resource book explores what wellbeing, community participation and independence mean to young people with profound and multiple learning difficulties (PMLD). Bringing together results of an extensive survey of more than 100 schools that teach young people with PMLD, the authors present many innovative ways in which schools are working to ensure young people with PMLD have lives of value that are as rich and meaningful as possible. Organised into three cohesive parts, this book provides a comprehensive insight into established theories and current perspectives on wellbeing and independence for people with PMLD before exploring the results from the Lives Lived Well survey and other international research, and then it helpfully illustrates best practice in action with a close look at an established, very successful specialist school. This book can be used as a guide, resource and inspiration for adults sharing their lives with young people with PMLD – whether practitioners or parents – and concludes by asking what we can learn from these young people to support us all in living life to the full.

Shared Musical Lives makes the case for the epistemological and ethical significance of musical experience. Music can be a source of self-knowledge and self-expression, and hence reveal important dimensions of the self to others. This knowledge--of both self and of others--has a moral force as well. Shared musical experience can transform and establish new modes of being with others, cultivate virtues, and expand the moral imagination. The term sonification (which means translating data into non-verbal audible tones) provides an organizing principle for the arguments in the book. Transposing the concept into a philosophical key, this book explores two forms of sonification: first, the process by which musical experience reveals dimensions of the self and relationships with others; and second, philosophical sonification, or the critical examination of philosophical concepts, arguments, and theories in view of what musical experience reveals. These two kinds of sonification are discussed specifically in the context of disability. In this book, author Licia Carlson brings the musical lives of people with cognitive and intellectual disabilities into the foreground in order to challenge and broaden existing conceptions of disability and music and provide new ways of thinking about the philosophies of music and disability.

This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services. The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning