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Beginning with an exploration of the perspective of persons with disabilities, the essays demonstrate the extent to which the ...
Beginning with an exploration of the perspective of persons with disabilities, the essays demonstrate the extent to which the disability experience is affected by social and cultural values, attitudes, and policies. In addition to these first-person reflections, there are essays relating to such issues as:
-The disability rights movement
-Social policy relating to disability
Physician-assisted suicide, genetic testing, selective abortion, the moral status of handicapped newborns, and living and dying with dignity
Written in an engaging style with a focus on the concrete, this collection of essays includes contributions by John Hockenberry, Oiver Sacks, Peter Singer, and others. It is a marvelous resource for enabling the reader to comprehend the experience of disability and to explore contemporary issues involving the disability community.
The statue depicted Christopher Newport having two intact arms.
In 1590, while serving as an English mercenary in the Caribbean, Newport lost part of his right arm. In 1607 he commanded the Susan Constant, which brought settlers to Jamestown. The settlers saw that his right arm ended in a hook.
Controversy about the statue installed at the entrance to the university focused naturally on sculptor Jon Hair's representation of Newport as normally "armed." Mr. Hair was quoted by the Associated Press as saying, "I wouldn't show an important historical figure like this with his arm cut off." According to the same report, Paul Trible, the university's president, agreed with Mr.Hair's judgment, and a spokeswoman for the university said the university would have no further comment.
How should the statue of Newport have been sculpted? How should Newport have been represented? Is there an issue? Critics of the sculptor argue that Christopher Newport had been without his right arm for seventeen years before he helped to found Jamestown; the disabled Newport, they say, is the one they should honor at the entrance to the university. But Mr. Hair, the sculptor, believes in accord with the administration of the university that this hero should not be portrayed as "maimed."
Mr. Hair's judgment as sculptor is likely an aesthetic judgment of some kind, but if it was an aesthetic judgment, then it is certainly informed by cultural values about what constitutes beauty and physical fitness. Mr. Hair's concern was likely a judgment about how he might represent Christopher Newport in a pleasing and appealing way, a way that might engender or reinforce favorable sentiment toward the university and its namesake. Those who are displeased with Mr. Hair's representation of Newport argue that Newport was "maimed" or disabled-a fact that in no way diminishes his personal worth or historical achievements-and that the university's representation of him should acknowledge that fact. Mr. Hair's opponents find his representation of Newport morally defective. Mr. Hair's quasi-aesthetic judgment reflects social prejudices about appearance that reveal deep-seated attitudes regarding disability in the minds of the able-bodied. Is Mr. Hair, along with key university administrators, morally blind? For some critics of Hair's normally armed sculpture of Newport, the morally insensitive rendering of the university's namesake is inexcusable. One might think of them as adding emphasizing qualifiers, like "in this day and age," "in the twenty-first century," and so on. How might any morally sensitive person, especially in an American democratic context, consent to the demeaning of an individual, and perhaps by implication a whole class of individuals who are disabled?
Is the charge of moral blindness credible? How might any university president be unaware of, or blind to, a culturally significant moral issue? Are opponents of the Newport statue straining at a gnat in order to manufacture an issue that, apart from their clamor, would never arise? Is aesthetic sensitivity to the qualities of the work the bottom line in judgments about aesthetic quality? What exactly is the alleged moral offense of Mr. Hair and university president Trible? Is the allegation plausible?
AN ANALOGY WITH RACE
In 1848 Frederick Douglass published his famous memoir about his life as a slave and his struggles to become a free man. Had Douglass been recaptured before finding his way to Massachusetts, he probably would have been returned to his owner, for he was a piece of property. At the time of the publication of his memoir, the institution of slavery was controversial. Many people, many Northerners even, sympathized with Southern slave owners.
Harvard's own distinguished professor of mathematics, Benjamin Peirce, as well as his philosopher son Charles, sympathized with the Southern slave owners and counted them as friends. Were the Peirces morally blind about the institution of slavery? Many people in the twenty-first century would think so: How could well-educated, sensitive people consider slavery morally acceptable? In long retrospect, the Harvard professor of mathematics and his philosopher son seem not to have been morally sensitive to the desperate needs of people like Frederick Douglass; they seem not to have been morally sensitive to the depravity of the institution of slavery. And surely they, along with many other Northerners, did not fail to have relevant information about the institution or the plight of individuals who, like Frederick Douglass, suffered under it. Whatever opinion one might form about the moral sensibility or sensitivity of people like the Peirces, one must agree that "in this day and age" slavery is universally morally condemned.
The Civil War and the Emancipation Proclamation changed American culture. Did they change American morals?
Forty years after the Civil War, another black American wrote another definitive work about American morals. W. E. B. Du Bois, the prolific black author, published in 1903 The Souls of Black Folk. In his book Du Bois describes and assesses the condition of black people in the American South. There were no slaves in 1903. But neither, according to Du Bois, were there many free black people. The three hundred years of slavery preceding the Civil War had engendered and solidified a large-scale culture-a political, economic, religious, and moral culture-that had swallowed black folks' souls whole. The Emancipation Proclamation might have "freed" the slaves, but it could not recover their souls. Du Bois's accounts of the cultural and moral pathologies of the American South are wrenchingly poignant-forty years after the Civil War freed the slaves. How much time is required to recover the souls of a people from a three-hundred-year culture in which they have no souls and are only, like oxen, animals to use for economic gain? And how can those who were, and remain, morally blind recover from their moral pathology?
Is the moral pathology that infected many Americans during those three hundred years of slavery still with us in the twenty-first century? How might it be still with us? Many think the moral pathology of slavery is still swallowing the souls of black folk. Jena, Louisiana, was in 2007 the scene of controversy between black citizens and white citizens, as was Jasper, Texas, in 1998. In September 2007 a large demonstration against racial discrimination occurred in Jena in protest of the county's district attorney's decision to prosecute "the Jena six," six black teenagers who were charged with the attempted murder of Justin Barker, a white teenager. In 1998, in Jasper, Texas, John King and two other white men dragged behind their pickup truck James Byrd, a black man, until he died from the injuries he sustained; a film, Jasper, Texas, chronicles the event and its racially charged context.
Well-intentioned people, whether white or black, seem to fall prey to many subtle influences that undermine their moral characters, their moral sight. Three hundred years of cultural habit may not be overthrown simply by a four-year war, or by the chaotic efforts in its aftermath to engender new cultural habits.
We know our ideals. We can recite them. They are embodied in the slogan of the French Revolution, in our American Declaration of Independence, and in our Constitution. Living by those ideals is another matter. Seeing them in the concrete situations of our everyday lives is difficult.
BACK TO DISABILITY
Just as the Emancipation Proclamation freed slaves, officially giving them the rights of citizens enumerated in the Constitution, the Americans with Disabilities Act of 1990 sought to bring disabled citizens into equity with their normally abled peers. Before 1990 Americans had little legislative guidance focused on the need for equity in social, cultural, and commercial relationships involving disabled Americans. The Americans with Disabilities Act (ADA) provided grounds for equal treatment of disabled Americans.
The Americans with Disabilities Act has four titles. Title 1 prohibits discrimination against persons with disabilities in employment hiring and promotion and in employee benefits. Title 2 prohibits state and local government entities from discriminating on the basis of disability. Title 3 requires all public accommodations to which the general public has access also to be accessible to persons with disabilities. Title 4 requires all telecommunications to be accessible to persons with disabilities.
Just as the Civil War did not solve the problems of equal treatment for black Americans, the ADA also did not solve equal treatment problems for differently abled Americans.
To use an artistic pretense and change the likeness of the university's namesake, charge critics of sculptor Jon Hair and the Christopher Newport University administration, expresses a morally inappropriate attitude, not only toward Christopher Newport but also toward the disabled in general. The critics sense moral impropriety in the statue, and they sense also a kind of moral insensitivity, or moral blindness, in the sculptor and the administrators who approved his work.
A similar controversy arose in 1997 around the presentation of the Franklin D. Roosevelt memorial in Washington, DC. Roosevelt was the only American elected to four terms as president, and, as a victim of polio since 1921, he required a wheelchair for mobility during his last years in office. The memorial as originally designed, according to its critics, denied Roosevelt's disability. The memorial was revised-by an agreement among critics, the Roosevelt family, the memorial's designer, and the National Park Service-and the first thing visitors see on entering it is FDR sitting in his wheelchair.
THE MORAL ISSUE
How should we think about, or see, those among us who are not "normally abled"? Of course there are problems about what normalcy is, and there are questions about what kinds of inability constitute disability. But the central issue of this volume is evident in the cases of the Christopher Newport statue and the FDR memorial. Is disability a characteristic of individuals that, like race, should be morally irrelevant to understanding their worth or potential for contribution to our common life, and how should we, in moral propriety, think about those among us who are disabled? And if we believe that full inclusion in the American community of those who are disabled is our goal, how may we effectively move toward realizing that goal?
Part I of this collection, "Experiencing Disability," is a series of short vignettes intended to bring readers a vivid and concrete sense of what it is like to live with a disability in the context of societal values that define "normality" in terms of certain standards of physical fitness, sexuality, youth, appearance, and autonomy. The essays in this section reveal the attitudinal and physical barriers that make difficult the full inclusion of people with disabilities into mainstream culture.
Part II, "The Case of Christopher Reeve," focuses on the controversy about Christopher Reeve, especially about his advocacy of medical solutions, perhaps through stem cell research, for injuries that result in significant disability. Many readers who are not part of the disabled community may be stunned by the attitudinal response of that community to Reeve's determined advocacy of medical solutions for disability. Does Reeve's determined effort to focus financial resources on seeking a cure detract from the need to provide adequate funding to meet the needs of those who live with permanent disability? Does this emphasis also overtly perpetuate the cultural prejudice that it is impossible to live a full and meaningful life in the face of disability?
Part III, "The Disability Rights Movement: Historical Perspectives," provides accounts of the disability rights movement that has emerged during the last part of the twentieth century. Some of the essays in this section also address specifically what it means to be disabled. In describing the political activism of the deaf community at Gallaudet University, for instance, Oliver Sacks moves from a "medical" view of deafness (as a condition to be treated) to a "cultural" view in which the deaf are members of a community that has a complete language and culture of its own.
Part IV, "Disability, Social Policy, and Citizenship," focuses on the course of events that gave birth to the Americans with Disability Act of 1990 and also on the issue of whether that legislation is being adequately implemented. For instance, the essay here by Michael Bérubé raises the question of what our responsibilities are to those who have mental disabilities.
Part V, "Disability and Physician-Assisted Suicide," addresses the question of whether the pursuit of autonomy by those with disabilities should lead to support for physician-assisted suicide. Many within the disability movement believe that social acceptance of physician-assisted suicide puts people with disabilities at unique risk. How does the "right to die" plea for individual autonomy about one's own death specifically affect those with disabilities?
Part VI, "Values at Stake in Disability Debates: Moral and Religious Issues," engages philosophical and religious issues about those who are disabled. A prominent issue here is how we ought morally to treat individuals who are born with disabilities. Peter Singer, a prominent ethicist, argues that we should feel no compunction about putting defective, or disabled, infants to death. Harriet McBryde Johnson, a prominent activist for those who are disabled, engages Singer on behalf of those like herself whom she feels are at great risk from Singer's utilitarian moralist stance. In reflecting on her own experience as a person with multiple sclerosis who lives in a religious community, S. Kay Toombs explores ways in which different value systems both shape our responses to disability and also impact contemporary debates with respect to dignity and end-of-life decisions. Samuel Joeckel's "A Christian Approach to Disability Studies," in addition to providing an overview of disabilities studies, examines the Church's "neglect to do its homework in the area of disability and chronic illness with respect to biblical studies, systematic, historical, and practical theology, especially pastoral care, liturgy, and preaching." The essay is a challenge to the Church to utilize its intellectual and practical resources in responding to disability issues.
Many of the essays included in this volume address the issue of how disability should be defined and what counts as being disabled. Richard K. Scotch's "Models of Disability and the Americans with Disabilities Act" and Samuel Joeckel's essay detail a variety of definitions of disability, including sociopolitical constructs, medical models, and moral models. Gerald Goggin and Christopher Newell also discuss the social construction of disability in their essay on Christopher Reeve. The essays in the first two parts address social perceptions and constructions of disability, and some of the pieces in part IV address the definition of disability.
The issue of what special rights, if any, should be afforded the disabled is prominent throughout parts IV and V. These issues are also covered in such experiential pieces as Ruthanne L. Curry's essay about her disabled son and the difficulties of getting him into a normal school. "Who Lost the ADA?" by Douglas Lathrop, included in part V, addresses the issue of whether the rights of the disabled should trump those of the able-bodied.
The question of what constitutes discrimination against the disabled is addressed from social, political, and moral perspectives in many of these essays. In some cases that question is the specific focus of a particular essay, as in Carol J. Gill's essay on suicide intervention for people with disabilities and Diane Coleman's testimony on the consequences of legally assisted suicide. Several essays in part VI also address this issue.
Excerpted from DISABILITY Copyright © 2009 by Robert M. Baird, Stuart E. Rosenbaum, and S. Kay Toombs. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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I Experiencing Disability
1 Walking with the Kurds John Hockenberry 23
2 I Hate Tiny Tim William G. Stothers 37
3 The Exceptional Family: Walking the Edge of Tragedy and Transformation Ruthanne L. Curry 41
4 Young and Disabled Nancy Mairs 57
5 Touching the Rock: An Experience of Blindness John M. Hull 71
6 I'm Listening as Hard as I Can Terry Galloway 77
7 Expecting Adam Martha Beck 83
8 Jamie Michael Berube 95
II The Case of Christopher Reeve
9 Fame and Disability: Christopher Reeve, Super Crips, and Infamous Celebrity Gerard Goggin Christopher Newell 105
10 More Than an Inspiration Robert Molsberry 117
11 Christopher Reeve's Super Bowl Ad Scored a Touchdown: But It Has Provoked a Surprisingly Negative Reaction among Disabled Groups. Why? John Williams 123
12 Wishing for Kryptonite: A Response to Christopher Reeve's Pursuit of Cure William J. Peace 127
13 Christopher Reeve: 1952-2004 John Schatzlein 131
III The Disability Rights Movement: Historical Perspectives
14 The Disability Rights Movement: A Brief History 137
15 The Second Phase: From Disability Rights to Disability Culture Paul K. Longmore 141
16 Seeing Voices: A Journey into the World of the Deaf Oliver Sacks 151
17 A Psychological View of Disability Culture Carol J. Gill 163
IV Disability, Social Policy, and Citzenship
18 Models of Disability and the Americans with Disabilities Act Richard K. Scotch 171
19 The History of the Americans with Disabilities Act: A Movement Perspective Arlene Mayerson 185
20 Who Lost the ADA? Douglas Lathrop 195
21 Citizenship and Disability Michael Berube 205
V Disability andPhysician-Assisted Suicide
22 National Council on Disability Position Paper on Disability and Physician-Assisted Suicide Issued in 1997 and Reaffirmed in 2005: Executive Summary 217
23 Autonomy Board Position Statement on Physician-Assisted Suicide 221
24 Gallagher and Batavia on Physician-Assisted Suicide: An Open Letter to People with Disabilities Drew Batavia Hugh Gregory Gallagher 223
25 Physician-Assisted Death: Are We Asking the Right Questions? Barry Corbet 225
26 The Consequences of Legalized Assisted Suicide and Euthanasia: Testimony before the United States Senate Judiciary Subcommittee Diane Coleman 237
27 Suicide Intervention for People with Disabilities: A Lesson in Inequality Carol J. Gill 255
28 Freeing Choices Nancy Mairs 271
VI Values at Stake in Disability Debates: Moral and Religious Issues
29 A Defense of Genocide Cal Montgomery 285
30 Unspeakable Conversations Harriet McBryde Johnson 291
31 Shopping at the Genetic Supermarket Peter Singer 309
32 The Uncertain Rationale for Prenatal Disability Screening David Wasserman Adrienne Asch 333
33 Living and Dying with Dignity S. Kay Toombs 339
34 A Christian Approach to Disability Studies: A Prolegomenon Samuel Joeckel 355