Disability: social aspects Books

Book SynopsisArtists like Blind Arthur Blake, Sonny Terry, Arizona Dranes, and Art Tatum have appeared throughout the history of popular music in America - the list of visually impaired black musicians is long. This book examines the ways that blindness, like blackness, shaped both the music these artists produced and the way the nation received it.

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Book SynopsisDrawing on extensive fieldwork and a variety of original sources, Katharina C. Heyer examines three case studies - Germany, Japan, and the United Nations - to trace the evolution of a disability rights model from its origins in the US through its adaptations in other democracies to its current formulation in international law.

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Book SynopsisCharting the divergent paths of paranoid and reparative affects through illness narratives, academic work, queer life, noise pollution, sonic torture, and other touchy subjects, William Cheng exposes a host of stubborn norms in our daily orientations toward scholarship, self, and sound. Cheng contends that reparative attitudes toward music and musicology can serve as barometers of better worlds.Trade Review“Just Vibrations is without question a groundbreaking book, bothaccessible to a wide readership (including undergraduate students) andtheoretically nuanced. Cheng elegantly balances clarity of explanationwith a depth and breadth of scholarship that encourage the reader todive more deeply into the theoretical underpinnings of his readings andinterpretative approaches. All this is accomplished through a writing stylethat is eminently readable, borderline poetic at times.” - Andrew Dell’Antonio, the University of Texas at Austin

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Book SynopsisThrough an analysis of experimental theater, dance theater, performance art, and gallery-based installation art across eight countries, Analola Santana explores the theoretical issues shaped by the encounters and negotiations between different bodies in the current Latin American landscape.Trade ReviewSantana cleverly locates her study in defining and re-defining abject bodies within the heavy weight of colonization that Latin America has suffered from the time of the conquest to today . . . [She] finds how these ‘freak' bodies have encountered, resisted, and hoped for a better present and future."" - Paola Hernández, University of Wisconsin""An important contribution to the scholarly debates around colonialism, coloniality, and neoliberalism through the prism of aesthetics, performance, embodiment, abjection, race, gender, sexuality, and ableisms . . . a theoretically sophisticated and eminently readable analysis of how the ‘freak' comes to embody a broad range of deviant and non-normative positions: the queer, the colonial, the abject, the criminal, the neoliberal."" - Diana Taylor, New York University

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Book SynopsisExamines how gender and femininity are performed and experienced in everyday life by women who do not rely on sight as their dominant mode of perception, identifying the multiple senses involved in the formation of gender identity within social interactions.Trade ReviewRefutes the simplistic division of sight and blindness as separate worlds of meanings … the firsthand narratives of blind women provide a mirror where sighted assumptions are revealed and made clear. The book offers alternative conceptualizations of gender, visual culture, the gaze, and the sensorium, as well as new perspectives on central concepts within qualitative research, such as the researcher's gaze and research observation." - Elaine Gerber, Montclair State University"I like this book, which investigates sight as well as blindness … a significant contribution to anthropology, disability studies, and women and gender studies, and likely to be required reading in courses in those fields. It is also just a great book to read—by anyone." - Rod Michalko, University of Toronto

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Book SynopsisThe blind of Tokugawa period Japan were prominent across a wide range of professions, and through a strong guild structure were able to exert contractual monopolies over certain trades. Blind in Early Modern Japan illustrates the breadth and depth of those occupations, and the power and respect that accrued to the guild members.Table of Contents Table of Contents List of Illustrations List of Tables Map of Japan in the Tokugawa (Edo) Period (1600–1868) Map of Japan: Modern Regions and Prefectures Abbreviated List of Historical Periods A Note on Japanese Terminology and Names Acknowledgments Preface: A Personal Note Introduction Chapter 1 Japanese Ophthalmology: Medical Studies of Eye Conditions Chapter 2 Eye Medicines: The Popular Culture of Cure Chapter 3 The Blind Guild: Status and Power Chapter 4 Non-Membership and the Challenge of Authority Chapter 5 Texts and Performances: The Significance of One Blind Musician’s Career Chapter 6 Healing by Touch: Blind Acupuncturists and Masseurs Epilogue Onward to the Meiji Period Bibliography Index

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Book SynopsisBrings together scholars, musicians, and family members of people with disabilities to collectively recount years of personal experiences, research, and perspectives on the societal and community impact of inclusive musical improvisation.Trade ReviewImprovising Across Abilities is perhaps the only manuscript of its kind: one that explores the applications of one adaptive music technology, AUMI, in extraordinary depth through multivalent perspectives and scenarios via the words and metaphors of an extraordinarily varied collective of writers, students, teachers, social justice workers, technologists, community activists, group home directors, and creatives. While most scholarly essay collections feature chapters by academics from a narrow range of fields (if not a single one), this volume’s editorial team has consciously drawn writing from members of the public community who might not ordinarily contribute to such a collection, as well as from artists, scientists, and professors who write as part of their profession. The variation in writers and voices not only adds to the value of the book, but reinforces its argument that everyone, no matter what shape, size, or ability, should have a voice." - Stephanie Jensen-Moulton, Brooklyn College"The awe-inspiring creator and thinker Pauline Oliveros is recognized for her pioneering electronic compositions, the astonishing diversity of her musical creations, her multifaceted poetic and expository writing, and her dedicated teaching of Deep Listening over many years. Some of her best-known work, the Sonic Meditations and Deep Listening Pieces, offers brief verbal instructions to allow groups to create musical experiences together, regardless of the musical training or experience of the people involved. An extension of this inclusiveness came in her later years with the Adaptive Use Musical Instrument (AUMI), now a freely downloadable app that allows users, including people with limited physical mobility, to participate in music making in new and provocative ways. This well-conceived book makes available a stunning wealth of information about AUMI by writers from many different backgrounds." - Fred Maus, University of VirginiaTable of Contents Introduction Section I: Dreaming of AUMI Chapter 1 Going Deep: AUMI Since Before the Beginning Leaf Miller Illustrations by Ty Dykema Chapter 2 From Punk Philosophy to Musical Accessibility Zane Van Dusen Chapter 3 My Transformation into a Masterpiece Musical Instrument and Musician Clara Tomaz Chapter 4 The Gift of Expression: Playing AUMI with My Son Julie Brocklehurst Chapter 5 AUMI as a Model for Social Justice George Lipsitz Chapter 6 The Dream of AUMI IONE Section II: Software for All People: Improvising AUMI’s Development Chapter 7 AUMI in the Context of Adaptive Music Alex Lubet Chapter 8 AUMI Among the ADMIs: The Adaptive Digital Context Grace Shih-en Leu Chapter 9 AUMI Development and Developers: The DLI Years (2007-2012) Sherrie Tucker Chapter 10 AUMI Technology Development at McGill (2012-2019) John Sullivan, Ivan Franco, Ian Hattwick, Thomas Ciufo, Eric Lewis Chapter 11 How Adaptive, How Useful? Technological Design Solutions in AUMI for iOS Henry Lowengard Chapter 12 Pauline’s World of Virtuosos: Expanded Instruments, Deep Listening, and Stretched Boundaries Jonas Braasch Section III, Part 1:AUMI Communities Chapter 13 Exploring AUMI’s Potential in the Thunder Bay Community An Interview between Nicola Oddy and Lise Vaugeois Chapter 14 Building and Sustaining Ethical Communities Together An Interview with Rebecca Caines by Ellen Waterman Chapter 15 There’s No Place Like AUMI: Building a Community Partnership in Lawrence, Kansas Jim Barnes, Kip Haaheim, Ray Mizumura-Pence, Sherrie Tucker, and Ranita Wilks Chapter 16 Love, Actually: Using AUMI to Transgress Ableist Directing Habits Nicole Hodges Persley Chapter 17 Wooden Snapdragon Julie Unruh Chapter 18 Improvising Inclusive Communities: Shared Reflections on the Jesse Stewart Residency in Lawrence, Kansas Abbey Dvorak, Kip Haaheim, Ray Mizumura-Pence, and Sherrie Tucker Chapter 19 Sending and Receiving: AUMI Bodies and Dance Improvisation Michelle Heffner Hayes and Sherrie Tucker Chapter 20 Communities of Generosity and Gratitude: AUMI-KU InterArts’ First Decade Ray Mizumura-Pence Section III, Part 2:AUMI Performance Chapter 21 WAAM + AUMI: The We Are All Musicians Project and the Adaptive Use Musical Instrument Jesse Stewart Chapter 22 “To Me, Dance is a Home”: An Interview with Jessie Huggett Jessie Huggett Interviewed by Jack Hui Litster Chapter 23 “I Am Here”: AUMI Sings and Choral Participation Ellen Waterman, Laurel Forshaw, Gillian Siddall, Henry Lowengard, Gale Franklin, Teresa Connors, and Karen Berglander Chapter 24 AUMI, Theremin, and Sonic Witnessing Li Harris Chapter 25 AUMI in Practice: The Mills AIE Matt Robidoux Chapter 26 Knowing as Feeling: Five Meditations on the Planets Kip Haaheim Section IV, Part 1: AUMI Classrooms Jennifer Hurst and Grace Shih-en Leu Chapter 27 Working with AUMI in Classroom Settings in a Center School for Students with Severe Cognitive and Physical Challenges Deborah A. Nelson and Nancy Patterson Chapter 28 AUMI and ‘Improvise Approach’ Backing Tracks Carrie Lennard Chapter 29 AUMI and the Ethics of Technology: A Personal Encounter Eric Lewis Section IV, Part 2: AUMI and Music Therapy: Supporting Independent Musicking Abbey Dvorak and Nicola Oddy Chapter 30 Clinical Applications Using AUMI in Music Therapy Practice Abbey L. Dvorak, James Maxson, and David Knott Chapter 31 Use of AUMI in Clinical Music Therapy for Hospitalized Patients with Complex Neurological Disabilities Sergio Hazard Chapter 32 AUMI and Musical Empowerment in a Pediatric Environment John Mulcahy Section V: Dreaming AUMI Futures Chapter 33 Dream Music Julie Unruh Chapter 34 Dreaming AUMI’S Future IONE References Editorial Team and Chapter Contributors

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Book SynopsisAn exploration of disability in Germany, from the Weimar Republic to the fall of the Berlin Wall. This book examines a range of literary and visual depictions of disability, focusing particular attention on disability and Nazi culture. It reveals how central the notion of disability is to modern German cultural history.Trade ReviewAn important and path-breaking book...immensely interesting, it will appeal not only to students of twentieth-century Germany but to all those interested in the growing field of disability studies. - Robert C. Holub, University of Tennessee ""A major, long-awaited book. The chapter on Nazi images is brilliant - certainly the best that has been written in this arena by any scholar."" - Sander L. Gilman, Emory University

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Book SynopsisAlthough the theme of blindness occurs frequently in literature, literary criticism rarely engages the experiential knowledge of people with visual impairments. The Metanarrative of Blindness counters this trend by bringing to readings of 20th-century works in English a perspective appreciative of impairment and disability.

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Book SynopsisExplores textual representations of disability in the global Renaissance. Elizabeth B. Bearden contends that monstrosity, as a precursor to modern concepts of disability, has much to teach about our tendency to inscribe disability with meaning.Trade ReviewAn excellent, timely, and necessary book that upends the problematic assumption in contemporary disability studies that norming influences didn't exist in premodern societies. Highly interdisciplinary, Monstrous Kinds is an important contribution to both premodern and contemporary disability studies."" - Allison P. Hobgood, Willamette University""An innovative book that will significantly contribute to the growing body of knowledge of Renaissance disability. The variety of texts examined from different geographical areas and languages, and the in-depth analysis of the works and images, are outstanding."" - Encarnación Juárez-Almendros, University of Notre Dame

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Book SynopsisAn engaging, rigorously researched biography of popular 19th century novelist Dinah CraikTrade ReviewA readable and riveting literary and cultural biography that documents Craik's embeddedness in personal, professional, and literary relationships. The book fills a gap in literary studies while also exploring new questions for Victorian disability studies. A meaningful scholarly work and a frankly enthralling read."" - Martha Stoddard Holmes, California State University, San Marcos""An invaluable record of a fascinating life, and a real tour-de-force of both research and organization. Bourrier has synthesized an impressive amount of primary research: manuscript diaries, letters, photographs, even genealogical information. This book will make it possible to give Craik the scholarly attention she has long deserved."" - Talia C. Schaffer, Graduate Center, City University of New York

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Book SynopsisHuman variation has always existed, though it has been conceived of and responded to variably. Beholding Disability in Renaissance England interprets sixteenth- and seventeenth-century literature to explore the fraught distinctiveness of human bodyminds and the deliberate ways they were constructed in early modernity as able, and not.

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Book SynopsisThrough the work of Joyce, Beckett, Egerton, and Bowen, Colangelo examines ability, as a category of embodiment and embodied experience, and in the process opens up a new area of inquiry in the growing field of literary disability studies.Table of Contents Acknowledgements Abbreviations Introduction: Tempestuously Able Bodied Clear Indistinct Ideas: Narrative, Sensation, and the Diaphanous Body in Joyce's Ulysses Indolesco Ergo Sum: Language, Compulsion, and Beckett's Existential Pains Abling Self and Other: Self-Sufficiency and Gender in George Egerton Unhoused Capacities: Elizabeth Bowen's Colonial Agency Conclusion: COVID-19 and the Plagues of Absence Bibliography

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Book SynopsisExplores the global changes in disability awareness, technology, and policy from the viewpoint of disabled people and their families in a range of local contexts. This book reports on ethnographic research in Brazil, Uganda, Botswana, Somalia, Britain, Israel, China, India, and Japan. It addresses the definition of human rights in local contexts.

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Book SynopsisSacrificial Limbs chronicles the everyday lives and political activism of disabled veterans of Turkey's Kurdish war, one of the most volatile conflicts in the Middle East. Through nuanced ethnographic portraits,Açiksözexamines how veterans' experiences of war and disability are closely linked to class, gender, and ultimately the embrace of ultranationalist right-wing politics. Bringing the reader into military hospitals, commemorations, political demonstrations, and veterans' everyday spaces of care, intimacy, and activism, Sacrificial Limbs provides a vivid analysis of the multiple and sometimes contradictory forces that fashion veterans' bodies, political subjectivities, and communities. It is essential reading for students and scholars interested in anthropology, masculinity, and disability.Trade Review"An engaging, sophisticated contribution to the literature on conflict studies, political violence, medical anthropology, gender studies, and disability studies, Sacrificial Limbs: Masculinity, Disability, and Political Violence in Turkey is likely to put Turkey on the map of world anthropology as never before." * Conflict and Society *"Offers a timely, rare, and robust look at the making and unmaking of political subjectivities, communities, and the state through a profound analysis of conscripts’ experiences of war and bodily loss." * New Perspectives on Turkey *"Sacrificial Limbs brings a critical approach to the often Eurocentric field of disability studies and contributes to gender studies and masculinity studies in the Middle East. Açıksöz’s perspectives on sacrificial crisis, sovereignty, and authoritarianism will encourage debates about the anthropology of state and conspiracy, disappointment, and crisis and temporality." * American Ethnologist *"An elegantly woven narrative that goes well beyond its manifest ethnographic aim and reads as an astute commentary on the recent past and present of Turkish politics. Combining theoretical rigor with ethnographic finesse, Sacrificial Limbs is an essential read for scholars of gender, disability, militarism, and political violence." * Journal of the Ottoman and Turkish Studies Association *"The strength of Sacrificial Limbs is twofold: on one hand, it delves deeply into the history of Turkish politics, culture, and social life while at the same time it opens up to a broader sphere of applicability for those interested in gender, sexuality, disability, nationalism, and politics." * Disability Studies Quarterly *"The book is equally a work of political anthropology and medical anthropology and would easily be at home in upper- level undergraduate or graduate courses about either subject. With its careful attention to the sociocultural and political, and the embodiment of disabled masculinity, the book is also an exemplary contribution to the burgeoning field of disability anthropology, and one that clearly demonstrates how work on disability can push medical anthropology to attend to the political in new ways." * Medical Anthropology Quarterly *"Açıksöz effectively reminds us of how otherwise unmarked bodies in theories of sovereignty and biopolitics (and necropolitics) are already always gendered, classed, and ethno-racialized in specific ways." * Anthropology Book Forum *"Brings together meticulous ethnographic insight with rigorous conceptual analysis. . . . Açıksöz has written a beautiful ethnography that provides rare insight into the intimate lives of the protagonists of ultranationalist politics. It is a book that approaches its interlocutors with critical empathy, seeking to understand and lay bare what propels them to become protagonists in deadly violence." * Kurdish Studies *"Sacrificial Limbs weaves an extremely well-written and caring ethnography with important theoretical insights. It is a must-read for those interested in contemporary political dynamics in Turkey and the Middle East. . . . It is no surprise that this elegant ethnography has won several prestigious book awards including the 2021 New Millennium Book Award by the Society of Medical Anthropology and 2020 Fatema Mernisi Award by MESA (Middle Eastern Studies Association). It is highly recommended to political anthropologists." * Political and Legal Anthropology Review *"Moving in its description and insightful in its analysis, Sacrificial Limbs: Masculinity, Disability, and Political Violence in Turkey provides timely and important contributions to the study of nationalism, sovereignty, violence, masculinity, and embodiment. The author’s discussion of prostheses and their political significance is particularly fascinating." * Ethnos *"This is the kind of book one would point to as a textbook example of ethnographic description or, if you like, of ‘thick description’. But the thickness under consideration does not just mean a mass of statements lumped together by a certain thematic resemblance but rather indicates an eloquently weaved narrative that moves, unsettles, and affects the reader." * Cultural Studies *"Can we still understand the suffering of the people whose politics are offensive to our worldviews if they are simultaneously threatening us or the people sharing our political stance? In Sacrificial Limbs, an ethnography of the disabled veterans and martyrs’ families in Turkey, Salih Can Açıksöz asks and answers this question by inhabiting a ‘grey zone’ and by writing critically, tragically and beautifully from within it." * Social Anthropology *Table of ContentsIllustrations Acknowledgments Preface: Entering a Gray Zone Abbreviations Introduction 1 • Being-on-the-Mountains 2 • The Two Sovereignties: Masculinity and the State 3 • Of Gazis and Beggars 4 • Communities of Loss 5 • Prosthetic Revenge 6 • Prosthetic Debts Epilogue: Bodies and Temporalities of Political Violence Notes Bibliography Index

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Book SynopsisThe stories of fatherscaring for non-verbal children and how these experiences alter their understandings of care, masculinity, and living a full life. Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of normal when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of whoTrade Review“Anthropologist Jackson sheds light on the lives of ‘men caring for children with major cognitive and physical disabilities’ in his vulnerable and edifying debut.” * Publishers Weekly *"Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care undertakes an exploration of how men shape their identities in the context of caregiving." * Allegra Lab *"What makes Worlds of Care a compelling ethnography is its emphasis on relations, embodied interactions, and lived personal histories – making it a notable contribution to ongoing conversations on disability and caregiving. . . . The text’s combination of personal memoir and the phenomenologically oriented ethnography of care brings to fore the relatability of its narratives for not only men but for individuals and parents – beyond genders, sexualities, geographies, and generations, both within and outside academia." * Exertions *Table of ContentsAcknowledgments 1. The Practice of Care 2. The Depths of Time: Past Becomings and Habitable Worlds Interlude Gary’s Arrival Story 3. Between Bodies: The Fleshy Work of Caregiving 4. Conditions of Possibility: Fathering, Masculinity, and Moral (Re)Orientations Interlude Connectivities 5. Belonging and Being-for-Others 6. The Axiom of Equality Epilogue Notes References Index

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Book SynopsisThis vivid portrait of contemporary parenting blends memoir and cultural analysis to explore evolving ideas of disability and human difference. An Ordinary Future is a deeply moving work that weaves an account of Margaret Mead's path to disability rights activism with one anthropologist's experience as the parent of a child with Down syndrome. With this book, Thomas W. Pearson confronts the dominant ideas, disturbing contradictions, and dramatic transformations that have shaped our perspectives on disability over the last century. Pearson examines his family's story through the lens of Mead's evolving relationship to disabilitya topic once so stigmatized that she advised Erik Erikson to institutionalize his son, born with Down syndrome in 1944. Over the course of her career, Mead would become an advocate for disability rights and call on anthropology to embrace a wider understanding of humanity that values diverse bodies and minds. Powerful and personal, An Ordinary Future revealTrade Review"[A] moving meditation on difference, disability, and humanity. In 2015, when his newborn daughter, Michaela, was diagnosed with Down syndrome, [Pearson] and his wife were shocked. Soon, though, he asked himself whether that initial response was generated by ideas about normalcy deeply embedded in the culture. . . . Sensitive reflections on human value." * Kirkus Reviews *"In a new book, an anthropologist and father of three, including a daughter with Down syndrome, reflects on the pressures of parenting." * Sapiens *Table of ContentsContents Preface 1. Becoming 2. Features 3. Institutions 4. Potential 5. Belonging 1 6. Vulnerability Epilogue Acknowledgments Notes Bibliography Index

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Book SynopsisA deep dive into the spectrum of Autistic experience and the phenomenon of masked Autism,giving individuals the tools to safely uncover their true selves while broadening society?snarrow understanding of neurodiversity?A remarkable work that will stand at the forefront of the neurodiversity movement.??Barry M. Prizant, PhD, CCC-SLP, author of Uniquely Human: A Different Way of Seeing AutismFor every visibly Autistic person you meet, there are countless ?masked? Autistic people who pass as neurotypical. Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren?t seen as needy or ?odd.?In Unmasking Autism, Dr. Devon Price shares his personal experience with masking and blends history, social science research, prescriptions, and personal profiles to tell a story of neurodivergence that has thus far been dominated by those on the outside looking in. For Dr. Price and many others, Autism is a deep source of uniqueness and beauty. Unfortunately, living in a neurotypical world means it can also be a source of incredible alienation and pain. Most masked Autistic individuals struggle for decades before discovering who they truly are. They are also more likely to be marginalized in terms of race, gender, sexual orientation, class, and other factors, which contributes to their suffering and invisibility. Dr. Price lays the groundwork for unmasking and offers exercises that encourage self-expression, including:?Celebrating special interests?Cultivating Autistic relationships?Reframing Autistic stereotypes?And rediscovering your valuesIt?s time to honor the needs, diversity, and unique strengths of Autistic people so that they no longer have to mask?and it?s time for greater public acceptance and accommodation of difference.In embracing neurodiversity, we can all reap the rewards of nonconformity and learn to live authentically, Autistic and neurotypical people alike.

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Book SynopsisA parent’s guide to empowering children to embrace their visible and invisible differences    Meg Zucker was born with one finger on each hand, shortened forearms, and one toe on each misshapen foot, caused by a genetic condition called ectrodactyly. She would eventually pass this condition on to her two sons, and, along with her husband, raise them and their adopted daughter, who has her own invisible differences. Born of the family’s hard-won experiences, this book offers invaluable advice on raising confident, empathetic, and resilient children who succeed, not despite but because of their differences.    Born Extraordinary helps parents of children with differences and disabilities to relinquish their instinctive anxieties, embrace their new normal, and ultimately find joy in watching their children thrive. Often the subjects of unwanted attention—ranging from pitying stares to bullying—Zuck

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Book SynopsisThis Monograph presents a longitudinal investigation of child development and family well-being during the first decade of life for children with Down syndrome, motor impairment, or developmental delay of uncertain etiology. The findings suggest that changes in selected policies and practices can improve outcomes for children with disabilities and their parentsTable of ContentsAbstract. Part I: Introduction. Part II: The Development of Children with Disabilities and the Adaptation of their Parents: Theoretical Perspectives and Empirical Evidence. Part III: The Early Intervention Collaborative Study: Study Design and Methodology. Part IV: Results: Predictors of Functioning and Change in Children's Development and Parent Well-being. Part V: Discussion. Part VI: Implications for Research, Policy, and Practice References. Acknowledgments. Commentary. Authors and Contributors. Statement of Editorial Policy

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Book SynopsisOne of Us views conjoined twinning and other “abnormalities” from the point of view of people living with such anatomies, and considers these issues within the larger historical context of anatomical politics. This deeply thought-provoking and compassionate work exposes the extent of the social frame upon which we construct the “normal.”Trade Review[Dreger] questions whether difference has to be viewed as an impairment and whether impairment is tragic… Disability arises not from the impairment but from the response to it in those around, and so is socially induced… Dreger makes no claim to know all the answers but, by taking their side so eloquently, she invites us to see conjoined twins as ‘no more broken than the rest of us.’ This book is an eloquent and humane plea to see conjoined twins, and others with impairment and disability, as ‘us’ and not ‘them.’ -- Jonathan Cole * Nature *Conjoined twins serve as a metaphor for fundamental truths about what it is to be human. Much of the book’s power, much of its importance, derives from the ways in which the stories it tells resonate with the lives of those who are neither conjoined nor intersexual… Let’s hope the publication of this book leads to…a serious rethinking of all our rights to consent to treatment, to privacy and autonomy, and to life itself. It is because this book has something important to say to ‘normates’ about their own lives, as well as about the lives of conjoined twins, that it stands a real chance of changing how we think about those with atypical anatomies. -- David Wootton * London Review of Books *Part history of medicine, part consciousness-raising freak show, this surprisingly entertaining book examines cultural reactions to conjoined twins and other anatomical anomalies. Dreger argues that Victorians were more appreciative than moderns of people born ‘different,’ viewing them as ‘authorities on a unique and strangely attractive experience.’ Nowadays, pediatric surgeons so prize normalcy that they perform sexual surgery on infants without concern for adult function; they may also withhold information from parents, and even override their consent, when dealing with birth defects… [H]er examples persuasively make the case that the anatomically different feel normal to themselves. * New Yorker *Challenging widely held assumptions is never easy, but that is exactly what Alice Dreger does in this thought provoking and compassionate book… Dreger suggests that raising the political consciousness of all those with unusual anatomies will benefit them and help shift societal attitudes towards acceptance and integration rather than ‘normalisation.’ This discussion will become increasingly important as medical techniques offer more sophisticated means of detecting, eliminating or treating the ‘abnormal.’ * Bulletin of Medical Ethics *Alice Dreger brims with concern about social attitudes towards people who don’t fit the stereotype of what is ‘normal’ and how this is reflected in deformities in general and conjoinedness in particular. If we look beyond her message—that concepts of ‘normality’ are paradoxically both flexible and rigid (to suit a range of prejudices), notoriously artificial and therefore undesirable—we see she has a point. With copious references, she shows that many sets of joined twins were content with their duplex identity, caring deeply about each other and accommodating their often striking psychological and intellectual differences with an intimacy we singletons can hardly imagine. -- Bob Rickard * Fortean Times *In this thoughtful and provocative examination of conjoined twins and other unusual anatomies, Dreger argues that the medically invasive, almost invariably life-threatening separation surgeries are unnecessary and performed, usually, before the people involved are old enough to consent to them. She claims that, historically, most conjoined twins have preferred conjoinment to life as singletons, as Dreger calls those who aren’t conjoined. Rather than changing conjoined twins so that the rest of us can fit them into our construction of normal human anatomy, Dreger believes singletons ought to expand their understanding of anatomical normality to include conjoined twins—and people with cleft lips, intersex genitalia, and other unusual anatomical features. -- John Green * Booklist *Dreger has written a book that is insightful, compassionate, critical, and interesting. She shows how understanding the history of medicine is essential for critically developing current ethical medical protocols and reconstructing what is taken to be normal. -- N. A. McHugh * Choice *Providing historical and contemporary evidence that most adult conjoined twins do not desire to be separated, and that many surgeries are carried out on children too young to object, Domurat Dreger voices distaste for Americans’ failure to tolerate anatomical difference and instead fetishize individualism at all cost… This pithily provocative critique of medical paternalism and society’s blind spot vis-à-vis anatomical standards provides a valuable opportunity to ponder the high-profile surgeries on conjoined twins that most of us know only through the news headlines we habitually fail to question. * Publishers Weekly *Are we singletons simpletons? It may be so. The evidence Alice Dreger marshals in this impressively argued, immensely readable book, suggests that conjoined twins are often perfectly at home in their shared skin, a fact that stretches, if anything, only our assumptions about their double lives. In articulating the rights of the individual in the most intimate of corporations, Dreger makes a persuasive argument for changing society rather than people. Given the recent deaths of the Bijani sisters following separation surgery, Dreger’s contribution to the debate has become even more important. -- Jeffrey Eugenides, winner of the Pulitzer Prize for Fiction for MiddlesexOne of Us is a fascinating, reasoned, and marvelous exploration of a subject we can’t help being drawn to. Alice Dreger’s book has forced me to rethink my most basic assumptions about the issue of identity and seperateness, for which I am most grateful. -- Abraham Verghese, author of The Tennis Partner and My Own Country: A Doctor’s Story of a Town and Its People in the Age of AIDSNot simply a study of conjoinment, Alice Dreger’s book makes a complex and subtle argument for why we should trouble the notion of normal—perhaps the most unchallenged, seemingly commonsensical, foundational idea of our particular place and historical moment. Questioning such an accepted and unexamined concept as normal and the practices that enforce it requires careful rhetorical strategies, subtle arguments, and intricate complexity. Dreger has done this remarkably well, always keeping her writing accessible and lively. More important, she recognizes and acknowledges the cultural logic most of us have absorbed that supports our understanding of conjoinment as a personal tragedy to be undone by medical intervention at any cost and our view of conjoined people as suffering intensely because they are not singletons. One of Us marks an important and original contribution. -- Rosemarie Garland-Thomson, Emory University, author of Extraordinary BodiesDreger is a perceptive, warm, thought-provoking and at just the right times, humorous writer. Her goal—to transform the assumptions made about people born with unusual anatomies—is wonderful and essential, especially for a culture that wishes to embrace diversity. Although her focus is on the most extraordinary form of human anatomy, conjoined twins, she also explores intersex, dwarfism, gigantism and cleft lip in her effort to reform the ‘deformed’ narrative. She weaves these voices with her own, creating a powerful historical perspective on the intersection of anatomy, surgery and social identity. After reading this book, all readers will reflect on being ‘defective,’ on the myriad ways that the body is and is not our destiny. -- Jeanne McDermott, author of Babyface: A Story of Heart and BonesFrom the freak show to the talk show, from the operating theater to the courtroom, Dreger traces the history, ethics, and cultural meanings of our attitudes toward conjoined twins and other people with unusual anatomies. This compassionate and well-researched study is a fascinating and important contribution to medical ethics. -- Katharine Park, Harvard University, coauthor of Wonders and the Order of Nature, 1250–1750Table of ContentsIntroduction 1. The Limits of Individuality 2. Split Decisions 3. What Sacrifice 4. Freeing the Irish Giant 5. The Future of Anatomy Notes Acknowledgments Credits Index Illustrations 1. Eng and Chang Bunker as young men 2. The Bunker twins with two of their sons 3. Types of conjoinment 4. Laloo and his parasitic twin 5. Abigail and Brittany Hensel at play in the family home 6. Chang and Eng Bunker engaged in various pursuits 7. Lin and Win Htut before separation 8. Cover of AORN Journal, January 1982 9. The Two-Headed Boy of Bengal 10. Charles Byrne with two other giants and several people with dwarfism 11. Advertising pamphlet for Millie and Christina McCoy 12. Crouching Figure with Visible Skeleton, by Laura Ferguson

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Book SynopsisIn this absorbing story of the changing life of a community, the authors of Deaf in America reveal historical events and forces that have shaped the ways that Deaf people define themselves today. Inside Deaf Culture relates Deaf people's search for a voice of their own, and their proud self-discovery and self-description as a flourishing culture.Trade ReviewThis well-organized and clearly written book provides a fascinating inside look at the development of Deaf culture… Padden and Humphries’s presentation of these marvelous insights into the history and development of the language and beliefs of the Deaf should be viewed as a welcome step in the quest to inform the hearing world of the rich and fertile culture of the authors’ beloved community. -- Susan Waltzman * New England Journal of Medicine *Inside Deaf Culture is a fascinating account of the rise of group identity among deaf people… Padden and Humphries shed light on the rise of Deaf schools, social clubs and theaters from the mid-19th to the mid-20th centuries—a history that is unknown to many. -- Jeremy Funk * Christian Century *Carol Padden and Tom Humphries have done it again—and readers everywhere should be grateful. Almost twenty years ago, Padden and Humphries helped transform the nascent and promising field of deaf history with their path-breaking and still relevant book, Deaf in America: Voices from a Culture. In their current work, Padden and Humphries further explore formative ‘cultural moments’ in the deaf community—what they describe as the generative ideas and influences that shape how deaf people identify themselves… This book is a valuable exploration of the deaf community. -- Robert M. Buchanan * American Historical Review *What a bold and courageous book! Carol Padden and Tom Humphries shed light on significant moments in the history of the American Deaf community. They show how struggles for power and dominance have run through their experience for more than a century, from coercive methods of teaching language to efforts of modern science to ‘correct’ and possibly even eliminate deafness—and with it, Deaf culture. -- Glenn Anderson, Professor and Director of Training, University of Arkansas Rehabilitation Research & Training Center for Persons Who Are Deaf or Hard of HearingInside Deaf Culture is a valuable addition to the growing collection of historical material about the Deaf community in the United States of America. It will add much to a better understanding of who we Deaf people are. -- Jack Gannon, author of Deaf HeritageWith writing remarkable for its grace, simplicity, and clarity, Padden and Humphries hold Deaf culture before our eyes for many faceted inspection. This book will be enormously important to ASL teachers, to teachers of Deaf studies, and to Deaf and hearing people who want to understand the Deaf World. -- Harlan Lane, author of A Journey into the Deaf-WorldTable of ContentsIntroduction: The Lens of Culture 1. Silenced Bodies 2. An Entirely Separate School 3. The Problem of Voice 4. A New Class Consciousness 5. Technology of Voice 6. Anxiety of Culture 7. The Promise of Culture 8. Cultures into the Future Notes References Acknowledgments Index

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Book SynopsisThe authoritative statement on the deaf, their education, and their struggle against prejudice.

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Book SynopsisWhen a childhood illness leaves her blind and deaf, Helen Keller's life seems hopeless indeed. But her indomitable will and the help of a devoted teacher empower Helen to triumph over incredible adversity. This amazing true story is finally brought to the beginner reader level.

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Book SynopsisTrade Review"Winner of the Catholic Media Book Award, History Category""An excellent demonstration of what is possible when one marshals the skills of a historian of religion to 'make room for the creative apperception of sickness and disability beyond the measure of the norm'."---Mark Brians, Reading Religion

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Book SynopsisGeorgina Robinson was a mental health worker murdered by a patient. This work comes from the public enquiry investigating her death. Academics and practitioners, from a wide range of disciplines, contribute their views about psychiatric patient violence and its management.

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Book SynopsisA radical exploration of disability praxis from an experienced disability activistTrade Review'A masterful intervention in disability theory and praxis that is particularly pertinent for an age of austerity, pandemic, and rising living costs.' -- Robert Chapman, author of 'Empire of Normality: Neurodiversity and Capitalism''[A] brilliant and much needed contribution to current debates in Disability Politics - offering a timely corrective to the most recent approaches to disability that have taken a neoliberal turn'. -- Ioana Cerasella Chis, social researcher, University of Birmingham'An essential read for the activist and the lay person who is interested in disability. Bob offers a Marxist materialist critique, identifying the limitations of the movement's emphasis on decontextualised legal rights rather than a deeper resistance to wider oppression of disabled people within capitalist society.The book clarified a lot of the main issues for me.' -- Marian Brooks-Sardinha, carer and retired lecturer'Look no further for a comprehensive analysis of the disabled movement which also intelligently looks at how disability can fit into the modern world.' -- Josh Hepple, activist, writer, and Disability Equality TrainerTable of ContentsPart I: Are there four cornerstones of disability politics? 1. The first cornerstone: the fundamental principles of disability 2. The second cornerstone: the self-organisation of disabled people 3. The third cornerstone: self-determination, deinstitutionalisation and promotion of self-directed living 4. The fourth cornerstone: disability culture and identity Part II: Towards a new disability praxis? 6. Impairment and oppression: the battleground reviewed 7. Location of impairment effects within disability politics: interrogating impairment effects and impairment reality 8. Disability praxis: some unanswered questions 9. Developing a radical eco-social approach towards producing and sustaining community-based services 10. From the ashes: a new disability praxis?

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Book SynopsisSocial Work and Disability offers a contemporary and critical exploration of social work practice with people with physical and sensory impairments, an area that has previously been marginalized within both practice and academic literature.Trade Review �Simcock and Castle offer a critical but balanced account of the role, function and context of social work with disabled people. The book is clear in asserting that social workers have an important and often positive role in the lives of disabled people. Countering some earlier texts which tended to be anti-social work and anti-professional, the authors make plain the barriers to enabling social work and the way the policy environment makes life challenging for disabled people and social workers. Optimistic in tone and practical in orientation, I would recommend it for practice and policy audiences alike.�Alan Roulstone, University of Leeds �This book is a very welcome addition to the limited literature on social work practice with disabled people. Its strength lies in linking a social model discourse with contemporary challenges for social work practice in this area. As such it �bridges the gap� between theoretical concepts and practice realities. It will serve as an excellent resource for discussion and debate with social work students.�David Mercer, Leeds Beckett UniversityTable of Contents Introduction PART I Perspectives: Understanding Disability 1 Lived Experience of Impairment, Disability and Social Work 2 Theories and Models of Disability 3 Disability from a Life Course Perspective 4 The Legal and Policy Perspective PART II Diversity, Inequality and Disability 5 Inequality, Oppression and Disability 6 Disability and Diversity PART III Disability and Social Work Practice 7 Communication and Engagement 8 Working with Disabled Children 9 Working with Disabled Adults 10 Safeguarding, Social Work and Disability 11 Collaborative Practice Conclusion Bibliography

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Book SynopsisSocial Work and Disability offers a contemporary and critical exploration of social work practice with people with physical and sensory impairments, an area that has previously been marginalized within both practice and academic literature.Table of Contents Introduction PART I Perspectives: Understanding Disability 1 Lived Experience of Impairment, Disability and Social Work 2 Theories and Models of Disability 3 Disability from a Life Course Perspective 4 The Legal and Policy Perspective PART II Diversity, Inequality and Disability 5 Inequality, Oppression and Disability 6 Disability and Diversity PART III Disability and Social Work Practice 7 Communication and Engagement 8 Working with Disabled Children 9 Working with Disabled Adults 10 Safeguarding, Social Work and Disability 11 Collaborative Practice Conclusion Bibliography

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Book Synopsis''A book that''ll change your perspective on life. You''ll not be able to put it down.'' Fearne Cotton''Everyone should read this book. Sophie Morgan is the epitome of grit and determination. Her writing is thought provoking, honest and in parts hilarious.'' Katie Piper OBE''Wrenchingly honest...eye-opening and deeply moving. *****'' Mail on SundayAs seen on ''Living Wild; How to Change your Life'' a two-part prime-time series on Channel 4, Loose Women and The Great Celebrity Bake Off for SU2COn the precipice of starting her adult life, aged eighteen, Sophie, a rebellious and incorrigible wild child, crashed her car and was instantly paralysed from the chest down. Rushed to hospital, everything she had dreamed for her life was instantly forgotten and her journey to rediscover herself and build a different life began. But being told she would never walk again would come to be the least of her concerns.Over the next eTrade ReviewA book that'll change your perspective on life. You'll not be able to put it down. * Fearne Cotton *What I love about this book is it's not about "overcoming disability". Instead, it's about learning how to live a good disabled life - one full of friends, love, opportunities and fun. Disabled joy is so rarely seen, but Sophie Morgan has it in spades. * Lucy Webster, Political journalist, writer and disability advocate *Wrenchingly honest...inspirational, eye-opening and deeply moving * Mail on Sunday *

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Book SynopsisA dazzling performance (think Forrest Gump, think Curious Incident, think Anne Donovan''s Buddha Da) from one of Scotland''s brightest new talents.Adam Spark. Eighteen going on eight-and-a-half. Fast-food worker. Queen fan. Last in the queue for luck. On waking from an accident in which he saves a child, he has the distinct impression that all is far from right. What are these curious lights that seem to surround people? Why are animals and machines trying to speak to him? And can he really control time? Is it just his imagination, or has Adam Spark been chosen to become Scotland''s first, and only, superhero? This, however, is the least of his problems. The local gang is luring him into deeper and darker peril. His sister and lone carer, Jude, is giving all her love to another woman. And if Jude abandons Adam - or Adam drives her away - all the superpowers in the world won''t be able to save him.Trade Review'Bizarre, hilarious, moving' Big Issue in Scotland; 'Sparky is a terrific character' Sunday Herald; 'Sparky is a virtuoso literary creation... This is a fresh and exciting read' Scotland on Sunday * . *

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