Download or read book Raising a Child with Albinism written by and published by . This book was released on 2008-01-01 with total page 199 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Beyond The Pale written by Emily Urquhart and published by HarperCollins. This book was released on 2015-03-31 with total page 268 pages. Available in PDF, EPUB and Kindle. Book excerpt: Like any new mother, Emily is thrilled when her first child, a daughter, is born. The baby, Sadie, is healthy and stunningly beautiful, with snow white hair and fair skin. Even the doctors and nurses can’t help a second look at this magical child. But soon a darker current begins to emerge—something is amiss. After three months of testing, Sadie is diagnosed with albinism, a rare genetic condition. Emily, a folklore scholar and an award-winning journalist, is accustomed to understanding and processing the world through stories. With Sadie at her side, Emily researches the cultural beliefs surrounding albinism and finds a curious history of outlandish tales of magic, and of good and evil reaching back through time, along with present-day atrocities. In some parts of the world, people with albinism are stalked; their condition is seen to bring luck and health as well as danger and death. Investigating the different reactions, in different cultures, to those with albinism, Emily begins to see her child as a connection between worlds. Part memoir, part cultural critique, and part genetic travelogue, Beyond the Pale is a brave, intimate investigation into the secret histories that each of us carries in our genes and an inspiring and beautiful memoir about parenting a child with a disability—and building a better future for that child.
Download or read book Golden Boy written by Tara Sullivan and published by G.P. Putnam's Sons. This book was released on 2013 with total page 370 pages. Available in PDF, EPUB and Kindle. Book excerpt: "A Tanzanian albino boy finds himself the ultimate outsider, hunted because of the color of his skin"--
Download or read book Then She Was Born written by Cristiano Gentili and published by . This book was released on 2017 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: 2017 Award Winning B.R.A.G. Medallion Honoree and Awesome Indies Seal of Excellence for Outstanding Independent Literature.Then She Was Born is more than a novel. It's an international human rights awareness campaign supported by eleven Nobel Peace Prize laureates, the Dalai Lama and Pope Francis. Based on an inconceivable reality for many in the world today, Then She Was Born combines the drama and redemption of Khaled Hosseini's The Kite Runner with the spirituality of Paulo Coelho's The Alchemist.A child is born and the joy of her parents turns to horror. The child is different, in a way that will bring bad luck to their superstitious community. The tradition should be for her to be abandoned, but Nkamba, the grandmother, is allowed to care for her.Naming her Adimu, Nkamba raises her as her own. Adimu is constantly marginalized and shunned by the community, although her spirit remains undiminished and full of faith. But when she encounters the wealthy British mine owner Charles Fielding and his wife Sarah, it is the beginning of something which will test them all.As Charles Fielding's fortunes wane, he turns in desperation to a witch doctor whose suggestion leaves him horrified. But as events begin to spiral out of control he succumbs to the suggestions and a group of men are sent on a terrible mission. The final acts, of one man driven by greed and another by power, will have a devastating effect on many lives.Cristiano Gentili's glittering prose and vivid imagery will have you captivated from the first page.
Download or read book A Different Kind of Perfect written by Cindy Dowling and published by Shambhala Publications. This book was released on 2006-09-12 with total page 282 pages. Available in PDF, EPUB and Kindle. Book excerpt: Every parent dreams of having a happy, healthy child. What happens when these dreams are shattered by a physical or cognitive disability? A Different Kind of Perfect offers comfort, consolation, and wisdom from parents who have been there—and are finding their way through. The writings collected here are grouped into chapters reflecting the progressive stages of many parents' emotional journeys, starting with grief, denial, and anger and moving towards acceptance, empowerment, laughter, and even joy. Each chapter opens with an introduction by Neil Nicoll, a child and family psychologist who specializes in development disorders.
Download or read book Truevine written by Beth Macy and published by Little, Brown. This book was released on 2016-10-18 with total page 496 pages. Available in PDF, EPUB and Kindle. Book excerpt: The true story of two African-American brothers who were kidnapped and displayed as circus freaks, and whose mother endured a 28-year struggle to get them back. The year was 1899 and the place a sweltering tobacco farm in the Jim Crow South town of Truevine, Virginia. George and Willie Muse were two little boys born to a sharecropper family. One day a white man offered them a piece of candy, setting off events that would take them around the world and change their lives forever. Captured into the circus, the Muse brothers performed for royalty at Buckingham Palace and headlined over a dozen sold-out shows at New York's Madison Square Garden. They were global superstars in a pre-broadcast era. But the very root of their success was in the color of their skin and in the outrageous caricatures they were forced to assume: supposed cannibals, sheep-headed freaks, even "Ambassadors from Mars." Back home, their mother never accepted that they were "gone" and spent 28 years trying to get them back. Through hundreds of interviews and decades of research, Beth Macy expertly explores a central and difficult question: Where were the brothers better off? On the world stage as stars or in poverty at home? Truevine is a compelling narrative rich in historical detail and rife with implications to race relations today.
Download or read book Reconstructing Motherhood and Disability in the Age of Perfect Babies written by Gail Landsman and published by Routledge. This book was released on 2008-08-18 with total page 289 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Pediatric Neuro Ophthalmology written by Michael C. Brodsky and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 692 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pediatric Neuroophthalmology details the diagnostic criteria, current concepts of pathogenesis, neuroradiological correlates, and clinical management of a large group of neuroophthalmic disorders that present in childhood. Surprisingly distinct from neuroophthalmic disorders afflicting adults, this set of diseases falls between the cracks of most ophthalmology training, and thus, warrants a practical, clinical guide for the practitioner in ophthalmology - the neuroophthalmologist, pediatric ophthalmologist, general ophthalmologist - as well as neurologists and for residents. The authors, leading pediatric ophthalmologists, have taken this difficult subject matter and developed an accessible, user-friendly manual with a detailed approach to the recognition, differential diagnosis, and management of pediatric neuroophthalmologic disorders.
Download or read book Your Genes Your Choices written by Catherine Baker and published by . This book was released on 1996 with total page 96 pages. Available in PDF, EPUB and Kindle. Book excerpt: Program discusses the Human Genome Project, the science behind it, and the ethical, legal and social issues raised by the project.
Download or read book Albinism in Africa written by Jennifer Kromberg and published by Academic Press. This book was released on 2018-01-02 with total page 362 pages. Available in PDF, EPUB and Kindle. Book excerpt: Albinism in Africa: Historical, Geographic, Medical, Genetic, and Psychosocial Aspects provides the first in-depth reference for understanding and treating patients of human albinism in Africa. Leading international contributors examine the historical, geographic, psychosocial, genetic and molecular considerations of importance in effectively and sensitively managing this genetic disorder. Foundational chapters covering the historical and psychosocial aspects of albinism are supplemented by discussions of the pathobiology of the disease, as well as a thorough analysis of the genetics of skin pigmentation, eye pigmentation, hair pigmentation, and incidents of skin cancer involved in the manifestations of this disorder. New prenatal diagnostics and genetic testing methods, genetic risk assessment for individuals, families, and communities, and novel genetic markers that may be used for developing new therapeutics for treating albinism are also discussed in detail. The book provides care management approaches that may be applied to instances of albinism in other regions, along with guiding principles for treating rare genetic disorders and stigmatized patient populations across the globe. - Includes contributions from leading international contributors who examine the historical, geographic, psychosocial, genetic and molecular aspects of importance in sensitively managing albinism in Africa - Discusses recent advances in our understanding of the pathobiology of albinism, while also offering a thorough analysis of the genetics of skin pigmentation, eye pigmentation, hair pigmentation, and rates of skin cancer - Highlights new prenatal diagnostics and genetic testing methods and approaches to genetic risk assessment for individuals, families and communities
Download or read book Community based Rehabilitation written by World Health Organization and published by . This book was released on 2010 with total page 452 pages. Available in PDF, EPUB and Kindle. Book excerpt: Volume numbers determined from Scope of the guidelines, p. 12-13.
Download or read book World Report 2019 written by Human Rights Watch and published by Seven Stories Press. This book was released on 2019-02-05 with total page 847 pages. Available in PDF, EPUB and Kindle. Book excerpt: The best country-by-country assessment of human rights. The human rights records of more than ninety countries and territories are put into perspective in Human Rights Watch's signature yearly report. Reflecting extensive investigative work undertaken by Human Rights Watch staff, in close partnership with domestic human rights activists, the annual World Report is an invaluable resource for journalists, diplomats, and citizens, and is a must-read for anyone interested in the fight to protect human rights in every corner of the globe.
Download or read book State of the World s Children 2013 written by UNICEF. and published by UN. This book was released on 2013 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: One in every seven children is disabled. Children with disabilities are among the most likely to be marginalized, poor and vulnerable. UNICEF is committed to improving the lives of children, particularly those who face the greatest disadvantages. The report will investigate the web of barriers disabled children face: discrimination, harmful norms and the lack of accurate information. The report will analyse and provide good-practice guidance on: inclusive health and education; prevention; nutrition; protection from violence, exploitation and abuse; emergency response; institutionalization; and the role of appropriate technology and infrastructure
Download or read book Prenatal Testing and Disability Rights written by Erik Parens and published by Georgetown University Press. This book was released on 2000-09-28 with total page 392 pages. Available in PDF, EPUB and Kindle. Book excerpt: As prenatal tests proliferate, the medical and broader communities perceive that such testing is a logical extension of good prenatal care—it helps parents have healthy babies. But prenatal tests have been criticized by the disability rights community, which contends that advances in science should be directed at improving their lives, not preventing them. Used primarily to decide to abort a fetus that would have been born with mental or physical impairments, prenatal tests arguably reinforce discrimination against and misconceptions about people with disabilities. In these essays, people on both sides of the issue engage in an honest and occasionally painful debate about prenatal testing and selective abortion. The contributors include both people who live with and people who theorize about disabilities, scholars from the social sciences and humanities, medical geneticists, genetic counselors, physicians, and lawyers. Although the essayists don't arrive at a consensus over the disability community's objections to prenatal testing and its consequences, they do offer recommendations for ameliorating some of the problems associated with the practice.
Download or read book Sorrowland written by Rivers Solomon and published by MCD. This book was released on 2021-05-04 with total page 368 pages. Available in PDF, EPUB and Kindle. Book excerpt: A TIME 100 Must-Read Book of 2021 A New York Times Best Science Fiction and Fantasy Book of 2021 The Stonewall Book Award winner of 2022 Named a Best Book of 2021 by NPR, The New York Public Library, Publishers Weekly and more! A triumphant, genre-bending breakout novel from one of the boldest new voices in contemporary fiction. Vern—seven months pregnant and desperate to escape the strict religious compound where she was raised—flees for the shelter of the woods. There, she gives birth to twins, and plans to raise them far from the influence of the outside world. But even in the forest, Vern is a hunted woman. Forced to fight back against the community that refuses to let her go, she unleashes incredible brutality far beyond what a person should be capable of, her body wracked by inexplicable and uncanny changes. To understand her metamorphosis and to protect her small family, Vern has to face the past, and more troublingly, the future—outside the woods. Finding the truth will mean uncovering the secrets of the compound she fled but also the violent history in America that produced it. Rivers Solomon’s Sorrowland is a genre-bending work of Gothic fiction. Here, monsters aren’t just individuals, but entire nations. It is a searing, seminal book that marks the arrival of a bold, unignorable voice in American fiction.
Download or read book Health Effects of Exposure to Low Levels of Ionizing Radiation written by National Research Council and published by National Academies. This book was released on 1990-02-01 with total page 436 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book reevaluates the health risks of ionizing radiation in light of data that have become available since the 1980 report on this subject was published. The data include new, much more reliable dose estimates for the A-bomb survivors, the results of an additional 14 years of follow-up of the survivors for cancer mortality, recent results of follow-up studies of persons irradiated for medical purposes, and results of relevant experiments with laboratory animals and cultured cells. It analyzes the data in terms of risk estimates for specific organs in relation to dose and time after exposure, and compares radiation effects between Japanese and Western populations.
Download or read book Raise High the Roof Beam Carpenters and Seymour An Introduction written by J. D. Salinger and published by Little, Brown. This book was released on 2019-08-13 with total page 143 pages. Available in PDF, EPUB and Kindle. Book excerpt: The last book-length work of fiction by J. D. Salinger published in his lifetime collects two novellas about "one of the liveliest, funniest, most fully realized families in all fiction" (New York Times). These two novellas, set seventeen years apart, are both concerned with Seymour Glass--the eldest son of J. D. Salinger's fictional Glass family--as recalled by his closest brother, Buddy. "He was a great many things to a great many people while he lived, and virtually all things to his brothers and sisters in our somewhat outsized family. Surely he was all real things to us: our blue-striped unicorn, our double-lensed burning glass, our consultant genius, our portable conscience, our supercargo, and our one full poet..."
