The Willowbrook Wars


Book Description

The Willowbrook Wars is a dramatic and illuminating account of the effort to close down a scandal-ridden institution and return its 5,400 handicapped residents to communities in New York. The wars began in 1972 with Geraldo Rivera's televised raid on the Willowbrook State School. They continued for three years in a federal courtroom, with civil libertarian lawyers persuading a conservative and conscience-stricken judge to expand the rights of the disabled, and they culminated in a 1975 consent decree, with the state of New York pledging to accomplish the unprecedented assignment in six years. From 1975 to 1982, David and Sheila Rothman observed this remarkable chapter in American reform of mental disabilities care. Would the state live up to its agreement without "dumping" residents into other nightmarish institutions? Would the lawyers prove as interested in meeting client needs as in securing client rights? Could a tradition-bound bureaucracy create a new network of community services? And finally, would a governor and a legislature tolerate such outside intervention, and if so, for how long? In answering these questions, The Willowbrook Wars takes us behind the scenes to clarify the role of the judiciary, the fate of the underprivileged, and the potential for social justice. In their new afterword, the authors bring the story up to date, describing the results of the closing of the institution in 1987 from the experiences of integrating the former residents into communities to the legal battles between the state of New York and advocates for the mentally handicapped.




The Rights Revolution


Book Description

The most dramatic change in American society in the last forty years has been the explosive growth of personal rights, a veritable "rights revolution" that is perceived by both conservatives and liberals as a threat to traditional values and our sense of community. Is it possible that our pursuit of personal rights is driving our country toward moral collapse? In The Rights Revolution, Samuel Walker answers this question with an emphatic no. The "rights revolution," says Walker, is the embodiment of the American ideals of morality and community. He argues that the critics of personal rights--from conservatives such as Robert Bork to liberals such as Michael Sandel--often forget the blatant injustices perpetrated against minorities such as women, homosexuals, African-Americans, and mentally handicapped citizens before the civil ights movement. They attack "identity politics" policies such as affirmative action, but fail to offer any reasonable solution to the dilemma of how to overcome exclusion in a society with such a powerful legacy of discrimination. Communitarians, who offer the most comprehensive alternative to a rights-oriented society, rarely define what they mean by community. What happens when conflicts arise between different notions of community? Walker concedes that the expansion of individual rights does present problems, but insists that the gains far outweigh the losses. And he reminds us that the absolute protection of our individual rights is our best defense against discrimination and injustice. The Rights Revolution is an impassioned call to honor the personal rights of all American citizens, and to embrace an enriched sense of democracy, tolerance, and community in our nation.




The Beautiful Unwanted


Book Description

Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents’ choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance. Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy’s personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the “discovery” of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology. We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.




Clearinghouse Review


Book Description




Useful Bodies


Book Description

Though notoriously associated with Germany, human experimentation in the name of science has been practiced in other countries, as well, both before and after the Nazi era. The use of unwitting or unwilling Subjects in experiments designed to test the effects of radiation and disease on the human body emerged at the turn of the twentieth century, when the rise of the modern, coercive state and the professionalization of medical science converged. Useful Bodies explores the intersection of government power and medical knowledge in revealing studies of human experimentation -- germ warfare and jaundice tests in Great Britain; radiation, malaria, and hepatitis experiments in the U.S.; and nuclear fallout trials in Australia. These examples of medical abuse illustrate the extent to which living human bodies have been "useful" to democratic states and emphasize the need for intense scrutiny and regulation to prevent future violations. Contributors: Brian Balmer, University College London; Miriam Boleyn-Fitzgerald, University of Wisconsin; Rodney A. Hayward, University of Michigan; Joel D. Howell, University of Michigan; Margaret Humphreys, Duke University; David S. Jones, Massachusetts General Hospital; Robert L. Martensen, Tulane University School of Medicine; Glenn Mitchell, University of Wollongong; Jenny Stanton, London School of Hygiene and Tropical Medicine; Gilbert Whittemore, independent scholar/attorney, Boston




Life and Death Decisions


Book Description

Issues of Life and Death such as abortion, assisted suicide, capital punishment and others are among the most contentious in many societies. Whose rights are protected? How do these rights and protections change over time and who makes those decisions? Based on the author’s award-winning and hugely popular undergraduate course at the University of Texas, this book explores these questions and the fundamentally sociological processes which underlie the quest for morality and justice in human societies. The Author’s goal is not to advocate any particular moral "high ground" but to shed light on the social movements and social processes which are at the root of these seemingly personal moral questions. Under 200 printed pages, this slim paperback is priced and sized to be easily assigned in a variety of undergraduate courses that touch on the social bases underlying these contested and contentious issues.




Who Lives, Who Dies, Who Decides?


Book Description

This second edition of Who Lives, Who Dies, Who Decides? has been updated to consider the rising stakes for issues of life and death. Abortion, assisted dying, and capital punishment are among the most contentious issues in many societies and demand debate. Whose rights are protected? How do these rights and protections change over time and who makes those decisions? Based on the author’s award-winning and hugely popular undergraduate course at the University of Texas and highly recommended by Choice Magazine, this book explores the fundamentally sociological processes which underlie the quest for morality and justice in human societies. The Author’s goal is not to advocate any particular moral "high ground" but to shed light on the social movements and social processes which are at the root of these seemingly personal moral questions and to develop readers to develop their own opinions.




Vaccination in America


Book Description

The success of the polio vaccine was a remarkable breakthrough for medical science, effectively eradicating a dreaded childhood disease. It was also the largest medical experiment to use American schoolchildren. Richard J. Altenbaugh examines an uneasy conundrum in the history of vaccination: even as vaccines greatly mitigate the harm that infectious disease causes children, the process of developing these vaccines put children at great risk as research subjects. In the first half of the twentieth century, in the face of widespread resistance to vaccines, public health officials gradually medicalized American culture through mass media, public health campaigns, and the public education system. Schools supplied tens of thousands of young human subjects to researchers, school buildings became the main dispensaries of the polio antigen, and the mass immunization campaign that followed changed American public health policy in profound ways. Tapping links between bioethics, education, public health, and medical research, this book raises fundamental questions about child welfare and the tension between private and public responsibility that still fuel anxieties around vaccination today.




The Two New Yorks


Book Description

Over the past eight years, a marked shift in the national political mood has substantially reduced the federal government's involvement in ameliorating urban problems and enhanced the prominence of state and local governments in the domestic policy arena. Many states and big cities have been forced to reassess their traditionally vexed relationships. Nowhere has this drama been played out more stormily than in New York. In The Two New Yorks, experts from government, the academy, and the non-profit sector examine aspects of an interaction that has a major impact on the performance of state and city institutions. The analyses presented here explore current state-city strategies for handling such troubling policy areas as education, health care, and housing. Attention is also given to important contextual factors such as economic and demographic trends, and to structural features such s the political framework, relationships with the national government, and the system of public finance. Despite its uniquely large scope, the drama of the new New Yorks parallels or presages issues faced by virtually all large cities and their states. This unprecedented study makes a vital contribution in an era of declining federal aid and pressing urban need.




From Snake Pits to Cash Cows


Book Description

Public institutions for people with developmental disabilities continue to operate within New York State, although their very existence has been condemned, and public policies directed their complete closure by the year 2000. From Snake Pits to Cash Cows investigates why these institutions persevere despite virtually universal predictions of their demise. Paul J. Castellani's provocative account spans the years 1935 to 2000, describing decades of conflict and confusion about the role of public institutions. This book demonstrates how and why a convergence of operational, fiscal, and political crises in the mid-1970s resulted in a series of agreements among adversaries that radically changed the political landscape, and reversed the plan to close all public institutions. He also shows why New York's experience has implications and lessons for the study of public policy in the area of developmental disabilities services and for understanding Medicaid policymaking, intergovernmental finance, and human services administration.