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.




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.




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.




Count Us In


Book Description

Award winner: “Hearing about Down syndrome directly from these young men has a good deal more impact than reading any guide from a professional.” —Booklist This book is in Mitchell and Jason’s own words. . . . We wanted readers to have a true-to-life sense of their charm, their directness, their humor and warmth, and, yes, their intelligence. At ages nineteen and twenty-two, respectively, Jason Kingsley and Mitchell Levitz shared their innermost thoughts, feelings, hopes, dreams―and their experiences growing up with Down syndrome. Their frank discussion of what mattered most in their lives―careers, friendships, school, sex, marriage, finances, politics, and independence―earned Count Us In numerous national awards, including the EDI Award from the National Easter Seal Society. More important, their wit, intelligence, candor, and charm made for a powerful and inspirational statement about the full potential of people with developmental disabilities, challenging prevailing stereotypes. In this edition, with a new afterword, the authors also discuss their lives since then: milestones and challenges, and changes both expected and unexpected. “Their parents were told to expect nothing. But Jason Kingsley and Mitchell Levitz were lucky, because their parents didn’t listen. They gave their sons that chance to show how far they could go—and they’ve astounded everyone!” —Jane Pauley “This single volume will do more to change stereotypes about Down syndrome than any book I have read. These two young men steal our hearts and wash away generations of misconceptions.” —Mary L. Coleman, MD, Emeritus, Georgetown University “An excellent illustration of what it’s like to have Down syndrome . . . Most moving here are the portrayals of strong family relationships.” —Publishers Weekly “Will open eyes and touch the heart.” —Library Journal




Down Syndrome Across the Life Span


Book Description

This book promotes a positive message for people with Down syndrome across the world. Living with Down Syndrome is a positive experience for the majority of children and adults with Down syndrome, and for their families. Of course there are difficulties to be faced, but quality of life, from infancy to old age, is determined more by the quality of healthcare, education and social inclusion offered to individuals, than by the developmental difficulties that are associated with Down syndrome. The aim of this book is to bring the latest information on research and good practice to families, practitioners and policy makers in order improve the services available to individuals with Down syndrome in all countries.




Down Syndrome


Book Description

First identified in the nineteenth century, Down syndrome is one of the most recognizable genetic disorders, marked by characteristic facial features and mild to moderate intellectual disability. Since scientists discovered in the 1950s that people with Down syndrome have an extra copy of chromosome 21, there has been much more research into the disorder, how to screen for it, and how to treat individuals who have it. This informative book covers all aspects of Down syndrome and includes accounts from people who have it.




Greater Expectations


Book Description

Based on more than 60 personal interviews and supported by scholarly research, this book shows the varied attitudes and approaches that make up the rich experience of living with disability in a changing society. Covering Down syndrome from conception to old age, this historical analysis touches upon a variety of themes, including education, friendship, health, recreation, sexuality, employment, and independence. This moving, partly autobiographical account is a must read for all parents, teachers, health professionals, and policy makers who make choices that affect people with disabilities.




From Diagnosis to Legislation


Book Description

Embark on an inspiring journey of resilience, advocacy, and triumph with "Champion of Inclusion: The Inspirational Story of Spain's First Down Syndrome Parliamentarian María del Mar Galcerán." This compelling biography, titled "From Diagnosis to Legislation," unfolds the extraordinary life of María del Mar Galcerán, who defied societal expectations and became a trailblazer in the world of politics. From the moment of Mar's diagnosis with Down syndrome to her historic entry into Spain's political arena, this book navigates the highs and lows of her remarkable journey. Follow Mar's evolution from a child breaking educational barriers to a passionate advocate shaping legislative change. Discover the pivotal role her parents, Luis and Isabel Galcerán, played in nurturing her potential and spearheading a movement for inclusion. "Champion of Inclusion" goes beyond the legislative achievements, offering an intimate exploration of Mar's personal triumphs and the challenges faced in the public eye. As Spain's first parliamentarian with Down syndrome, Mar encountered skepticism, discrimination, and media scrutiny, yet her unwavering spirit prevailed. This book highlights the enduring impact of Mar's legislative contributions, examining the tangible changes in education, employment, and accessibility that she championed. It delves into the ongoing struggle for societal inclusion, challenging perceptions and paving the way for a more equitable future. María del Mar Galcerán's story is a testament to the transformative power of representation and the resilience required to break down societal barriers. Her legacy extends beyond legislation, inspiring future generations within the Down syndrome community and reshaping the narrative surrounding individuals with developmental differences. "Champion of Inclusion" is a captivating narrative that will leave you inspired, moved, and motivated to challenge your own perceptions. Whether you seek stories of triumph over adversity, advocate for inclusivity, or aspire to make a difference in the world, this biography is a compelling must-read. Join us on a journey from diagnosis to legislation and witness the indomitable spirit of a true champion of inclusion.




Down Syndrome


Book Description




Down Syndrome


Book Description