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Examining mothers of newly diagnosed disabled children within the context of new reproductive technologies and the discourse of choice, this book uses anthropology and disability studies to revise the concept of "normal" and to establish a social environment in which the expression of full lives will prevail.
In recent decades, there has been a substantial turn towards narrative and life history study. The embrace of narrative and life history work has accompanied the move to postmodernism and post-structuralism across a wide range of disciplines: sociological studies, gender studies, cultural studies, social history; literary theory; and, most recently, psychology. Written by leading international scholars from the main contributing perspectives and disciplines, The Routledge International Handbook on Narrative and Life History seeks to capture the range and scope as well as the considerable complexity of the field of narrative study and life history work by situating these fields of study within the historical and contemporary context. Topics covered include: • The historical emergences of life history and narrative study • Techniques for conducting life history and narrative study • Identity and politics • Generational history • Social and psycho-social approaches to narrative history With chapters from expert contributors, this volume will prove a comprehensive and authoritative resource to students, researchers and educators interested in narrative theory, analysis and interpretation.
This groundbreaking text makes an intervention on behalf of disability studies into the broad field of qualitative inquiry. Ronald Berger and Laura Lorenz introduce readers to a range of issues involved in doing qualitative research on disabilities by bringing together a collection of scholarly work that supplements their own contributions and covers a variety of qualitative methods: participant observation, interviewing and interview coding, focus groups, autoethnography, life history, narrative analysis, content analysis, and participatory visual methods. The chapters are framed in terms of the relevant methodological issues involved in the research, bringing in substantive findings to illustrate the fruits of the methods. In doing so, the book covers a range of physical, sensory, and cognitive impairments. This work resonates with themes in disability studies such as emancipatory research, which views research as a collaborative effort with research subjects whose lives are enhanced by the process and results of the work. It is a methodological approach that requires researchers to be on guard against exploiting informants for the purpose of professional aggrandizement and to engage in a process of ongoing self-reflection to clear themselves of personal and professional biases that may interfere with their ability to hear and empathize with others.
Introduction: the consequences of newborn screening -- The expansion of newborn screening -- Patients-in-waiting -- Shifting disease ontologies -- Is my baby normal? -- The limits of prevention -- Does expanded newborn screening save lives? -- Conclusion: the future of expanded newborn screening
This volume seeks to answer the call for richer, more diverse understandings of disability through questions about narrative frameworks in disability research.Narrative is a omnipresent meaning-producing communication form in social life that is both cultural and personal.
Documents an important yet much neglected practice in prenatal medicine Provides a challenging new perspective on how ethically-challenging biomedical technologies are routinised and normalised in a contentious context Offers in-depth research for key debates in sociology, anthropology, bioethics, genetics, and STS Explores how ideas around disability are reproduced in the clinic and feed into wider discourses about disablement in Western culture
One of the great prophetic figures of our time was Jean Vanier, founder of the L'Arche communities, where those with and without disabilities share life together. This book tells the story of a new, practical development, inspired by Vanier, and taking further both his thought and the practice of L'Arche. Lyn's House is a small Christian house of hospitality and friendship in Cambridge, set in an open community of volunteers and supporters. Its story told here contains moving accounts of its origins and development, and of the friendships it enables. The contributors, all members of the wider Lyn's House community, also reflect on its meaning, and explore the implications for both church and society of this creative response to Vanier's call. Not only does the book convey the spirit of Lyn's House and its transformative effects on those who participate in it, it also offers inspiration and a practical guide to any who wish to begin something similar.
The Mother-Blame Game is an interdisciplinary and intersectional examination of the phenomenon of mother-blame in the twenty-first century. As the socioeconomic and cultural expectations of what constitutes “good motherhood” grow continually narrow and exclusionary, mothers are demonized and stigmatized—perhaps now more than ever—for all that is perceived to go “wrong” in their children’s lives. This anthology brings together creative and scholarly contributions from feminist academics and activists alike to provide a dynamic study of the many varied ways in which mothers are blamed and shamed for their maternal practice. Importantly, it also considers how mothers resist these ideologies by engaging in empowered and feminist mothering practices, as well as by publicly challenging patriarchal discourses of “good motherhood.”
In Disability Worlds, Faye Ginsburg and Rayna Rapp chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars. They situate their disabled children’s lives among the experiences of advocates, families, experts, activists, and artists in larger struggles for recognition and rights. Disability consciousness, they show, emerges in everyday politics, practices, and frictions. Chapters consider dilemmas of genetic testing and neuroscientific research, reimagining kinship and community, the challenges of “special education,” and the perils of transitioning from high school. They also highlight the vitality of neurodiversity activism, disability arts, politics, and public culture. Disability Worlds reflects the authors’ anthropological commitments to recognizing the significance of this fundamental form of human difference. Ginsburg and Rapp’s conversations with diverse New Yorkers reveal the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.
Based on years of careful ethnographic fieldwork in Hanoi, Haunting Images offers a frank and compassionate account of the moral quandaries that accompany innovations in biomedical technology. At the center of the book are case studies of thirty pregnant women whose fetuses were labeled ÒabnormalÓ after an ultrasound examination. By following these women and their relatives through painful processes of reproductive decision making, Tine M. Gammeltoft offers intimate ethnographic insights into everyday life in contemporary Vietnam and a sophisticated theoretical exploration of how subjectivities are forged in the face of moral assessments and demands. Across the globe, ultrasonography and other technologies for prenatal screening offer prospective parents new information and present them with agonizing decisions never faced in the past. For anthropologists, this diagnostic capability raises important questions about individuality and collectivity, responsibility and choice. Arguing for more sustained anthropological attention to human quests for belonging, Haunting Images addresses existential questions of love and loss that concern us all.