Down's Syndrome Screening and Reproductive Politics


Book Description

Nominated for the Foundation of Sociology of Health and Illness Book Prize 2018 In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it? Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood. The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.




The Politics of Down Syndrome


Book Description

Are we a more accepting society than ever before? Is there no longer a them and us division between the disabled and everybody else? The Politics of Down Syndrome looks at how we got to where we are today, from the racist roots of its identification to the rising number of abortions today. Down syndrome is the most common syndrome in the world, shared by all classes and races, yet it's one we rarely address our feelings about, head on. This book, although direct and questioning, takes a positive view about where we go from here and the opportunity for society to fully enjoy the benefits of being inclusive.




Unexpected


Book Description

What prenatal tests and down syndrome reveal about our reproductive choices When Alison Piepmeier—scholar of feminism and disability studies, and mother of Maybelle, an eight-year-old girl with Down syndrome—died of cancer in August 2016, she left behind an important unfinished manuscript about motherhood, prenatal testing, and disability. In Unexpected, George Estreich and Rachel Adams pick up where she left off, honoring the important research of their friend and colleague, as well as adding new perspectives to her work. Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing. At a time when medical technology is rapidly advancing, Unexpected provides a much-needed perspective on our complex, and frequently troubling, understanding of Down syndrome.




Testing Women, Testing the Fetus


Book Description

Rich with the voices and stories of participants, these touching, firsthand accounts examine how women of diverse racial, ethnic, class and religious backgrounds perceive prenatal testing, the most prevalent and routinized of the new reproducing technologies. Based on the author's decade of research and her own personal experiences with amniocentesis, Testing Women, Testing the Fetus explores the "geneticization" of family life in all its complexity and diversity.




Choosing Down Syndrome


Book Description

An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective. The rate at which parents choose to terminate a pregnancy when prenatal tests indicate that the fetus has Down syndrome is between 60 and 90 percent. In Choosing Down Syndrome, Chris Kaposy offers a carefully reasoned ethical argument in favor of choosing to have such a child. Arguing from a pro-choice, disability-positive perspective, Kaposy makes the case that there is a common social bias against cognitive disability that influences decisions about prenatal testing and terminating pregnancies, and that more people should resist this bias by having children with Down syndrome. Drawing on accounts by parents of children with Down syndrome, and arguing for their objectivity, Kaposy finds that these parents see themselves and their families as having benefitted from having a child with Down syndrome. To counter those who might characterize these accounts as based on self-deception or expressing adaptive preference, Kaposy cites supporting evidence, including divorce rates and observational studies showing that families including children with Down syndrome typically function well. Himself the father of a child with Down syndrome, Kaposy argues that cognitive disability associated with Down syndrome does not lead to diminished well-being. He argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome. Kaposy does not advocate restricting access to abortion or prenatal testing for Down syndrome, and he does not argue that it is ethically mandatory in all cases to give birth to a child with Down syndrome. People should be free to make important decisions based on their values. Kaposy's argument shows that it may be consistent with their values to welcome a child with Down syndrome into the family.




Assessing Genetic Risks


Book Description

Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.




Disability, Normalcy, and the Everyday


Book Description

Many critical analyses of disability address important ‘macro’ concerns, but are often far removed from an interactional and micro-level focus. Written by leading scholars in the field, and containing a range of theoretical and empirical contributions from around the world, this book focuses on the taken-for-granted, mundane human activities at the heart of how social life is reproduced, and how this impacts on the lives of those with a disability, family members, and other allies. It departs from earlier accounts by making sense of how disability is lived, mobilised, and enacted in everyday lives. Although broad in focus and navigating diverse social contexts, chapters are united by a concern with foregrounding micro, mundane moments for making sense of powerful discourses, practices, affects, relations, and world-making for disabled people and their allies. Using different examples – including learning disabilities, cerebral palsy, dementia, polio, and Parkinson’s disease – contributions move beyond a simplified narrow classification of disability which creates rigid categories of existence and denies bodily variation. Disability, Normalcy, and the Everyday should be considered essential reading for disability studies students and academics, as well as professionals involved in health and social care. With contributions located within new and familiar debates around embodiment, stigma, gender, identity, inequality, care, ethics, choice, materiality, youth, and representation, this book will be of interest to academics from different disciplinary backgrounds including sociology, anthropology, humanities, public health, allied health professions, science and technology studies, social work, and social policy.




The Tentative Pregnancy


Book Description




The Abortion Act 1967


Book Description

Biography of the Abortion Act, exploring how it was shaped by and shaped a changing UK.




An Ordinary Future


Book Description

This 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 disability—a 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 reveals why this call is still relevant in the ongoing fight for disability justice and inclusion, while shedding light on the history of Down syndrome and how we raise children born different.