ETHICS AND MENTAL RETARDATION

Transcription

1 ETHICS AND MENTAL RETARDATION

2 PHILOSOPHY AND MEDICINE Editors: H. TRISTRAM ENGELHARDT, JR. The Center for Ethics, Medicine and Public Issues, Baylor College of Medicine, Houston, Texas, U.S.A. STUART F. SPICKER University of Connecticut, School of Medicine, Farmington, Connecticut, U.S.A. VOLUME 15

3 ETHICS AND MENTAL RETARDATION Edited by LORETTA KOPELMAN and JOHN C. MOSKOP East Carolina University School of Medicine, Greenville, N.C., U.S.A. SPRINGER-SCIENCE+BUSINESS MEDIA, B.V.

4 Library of Congress Cataloging in Publication Data Main entry under title: Ethics and mental retardation. (Philosophy and medicine ; v. 15) Includes index. 1. Mental retardation-moral and ethical aspects. 2. Mental retardation-religious aspects. 3. Mental health laws. I. Kopelman, Loretta M., II. Moskop, John C., III. Series. [DNLM: 1. Mental retardation- Congresses. 2. Mental retardation Legislation and jurisprudence--congresses. 3. Ethics- Congresses. 4. Public policy- Congresses. 5. Human rights- Congresses. W3 PH609 v. 15) RC570.E ' ISBN ISBN (ebook) DOI / All Rights Reserved 1984 Springer Science+Business Media Dordrecht Originally published by D. Reidel Publishing Company, Dordrecht, Holland in 1984 and copyright holders as specified on appropriate pages within No part of the material protected by this copyright notice may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without written permission from the copyright owner

5 For Arthur and Ruth

6 TABLE OF CONTENTS ACKNOWLEDGEMENTS ix INTRODUCTION xi SECTION I I EXAMINING THE RIGHTS TRADITION JEFFRIE G. MURPHY I Rights and Borderline Cases 3 JOSEPH MARGOLIS I Applying Moral Theory to the Retarded 19 H. TRISTRAM ENGE LHARDT, JR I Joseph Margolis, John Rawls, and the Mentally Retarded 37 JEFFRIE G. MURPHY I Do the Retarded Have a Right Not to Be Eaten? A Rejoinder to Joseph Margolis 43 ANTHONY D. WOOZLEY I The Rights of the Retarded 47 CORA DIAMOND I Rights, Justice and the Retarded 57 SECTION II I RESPECT AND LABELING LORETTA KOPELMAN I Respect and the Retarded: Issues of Valuing and Labeling 65 STUART F. SPICKER I Person Ascriptions, Profound Disabilities and Our Self-Imposed Duties: A Reply to Loretta Kopelman 87 LAURENCE B. McCULLOUGH I The World Gained and the World Lost: Labeling the Mentally Retarded 99 ROBERT L. HOLMES I Labeling the Mentally Retarded: A Reply to Laurence B. McCullough 119 SECTION III I THEOLOGY AND PHILOSOPHY O F RELIGION ROBERT M. ADAMS I Must God Create the Best? 127 WILLIAM F. MAY I Parenting, Bonding, and Valuing the Retarded 141

7 viii TABLE OF CONTENTS JOHN c. MOSKOP 1 Responsibility for the Retarded: Two Theological Views. 161 LARRY R. CHURCHILL I Philosophical and Theological Perspectives on the Value of the Retarded: Responses to William F. May and John C. Moskop 177 SECTION IV/ LAW AND PUBLIC POLICY MICHAEL KINDRED I The Legal Rights of Mentally Retarded Persons in Twentieth Century America 185 BARBARA BAUM LEVENBOOK I Examining Legal Restrictions 0 0 ~ ~ ~ ~ ~ DAVID J. ROTHMAN I Who Speaks for the Retarded? 223 GERALD L. MORIARTY I Commentary on David J. Rothman's 'Who Speaks for the Retarded?' 235 ARTHUR E. KOPELMAN I Dilemmas in the Neonatal Intensive Care Unit 243 THEODORE KUSHNICK I Health Care, Needs and Rights of Re tarded Persons 247 NOTES ON CONTRIBUTORS 253 INDEX 255

8 ACKNOWLEDGEMENTS To the East Carolina University School of Medicine and the North Carolina Humanities Committee we express our deep appreciation for sponsoring the symposium which became the basis for this book. The symposium, entitled "Natural Abilities and Perceived Worth: Rights, Values and Retarded Persons", was held on October 1-3, 1981, in Greenville, North Carolina. We are grateful to the faculty of the School of Medicine and of the Department of Philosophy at East Carolina University for their support of this project. In particular we want to thank William Laupus, M.D., Dean of the School of Medicine, Thomas B. Brewer, former Chancellor of East Carolina University, R. Oakley Winters, former executive director of the North Carolina Humanities Committee, and the general editors of this series, H. Tristram Engelhardt, Jr. and Stuart F. Spieker, for their encouragement and assistance. A special debt of gratitude is owed to our contributors for their willingness to explore a subject that is doubly difficult because it is both uncharted and interdisciplinary. We wish to thank Robert M. Adams and Jeffrie Murphy for allowing us to include their previously published papers in this volume. (Adam's 'Must God Create the Best?' originally appeared in the Philosophical Review, 81, 1972, and Murphy's 'Rights and Borderline Cases' appeared in the Arizona Law Review, 19, 1977.) Many challenging and tedious tasks in preparing for the symposium and volume fell to our secretaries Diane Greer, Ramona Shannon and Joanne Stoddard. We thank them for their patience, care and dedication in working with us. LORETTA KOPELMAN JOHN MOSKOP

9 INTRODUCTION This volume offers a collection of writings on ethical issues regarding retarded persons. Because this important subject has been generally omitted from formal discussions of ethics, there is a great deal which needs to be addressed in a theoretical and critical way. Of course, many people have been very concerned with practical matters concerning the care of retarded persons such as what liberties, entitlements or advocacy they should have. Interestingly, because so much practical attention has been given to issues which are not discussed by ethical theorists, they offer a rare opportunity to evaluate ethical theories themselves. That is, certain theories which appear convincing on other subjects seem implausible when they are applied to reasoned and compelling views we hold concerning retarded individuals. Our subject, then, has both practical and conceptual dimensions. Moreover, because it is one where pertinent information comes from many sources, contributors to this volume represent many fields, including philosophy, religion, history, law and medicine. We regret that it was not possible to include more points of view, like those of psychologists, sociologists, nurses and families. There is however, a good and longstanding literature on mental retardation from these perspectives. We sought, rather, to address a neglected topic: How can we identify and evaluate the assumptions in our laws, religious, morals and mores which shape our judgments about retarded individuals? Are we kind and fair to them in the way we frame our theories and our laws? It would be easier and certainly less embarrassing to identify unwarranted assumptions of peoples or ages other than our own. It is not difficult, for example, to ridicule pretentious "scientific" claims about the retarded made by the "experts" of the early part of this century. Though they claimed to know that most mental retardation is hereditary along Mendelian lines, it is now held that less than 20% of it is. They claimed to know, moreover, that mental retardation is closely associated with deviant behavior, including crime, alcoholism and sexual promiscuity. The pompous trappings of their sweeping and unfounded claims might seem amusing were it not for the harm done by them. Whether people found the "facts" they wanted to find or were sincerely misled by faulty reasoning, it was too easy a step from this hard xi

10 xii INTRODUCTION "data" to eugenics movements with laws requiring sterilization and other restrictions of the freedoms of citizens whom society called 'retarded'. These movements, invoking the authority of science, encouraged the cruel devaluation of people who, through no fault of their own, were retarded or who had retarded relatives. Whatever burdens these people had were increased rather than diminishyd by society. It is not difficult to find the remnants of these views in our society. We believe that attention to the moral issues raised by retarded individuals will help us identify and overcome unwarranted attitudes and practices. The manner in which retarded members of our communities are viewed and treated, then, not only makes a difference in their lives but also tells us a good deal about ourselves. Some of the more practical issues (and there has been lively debate on these for some time) are: How should we allocate resources to help retarded citizens and their families? How well have institutions worked and what alternatives should be available? What are the motives for depopulation of our institutions: kindness, economics or expediency? On what basis do we ascribe handicaps? More theoretical questions can also be raised: What kinds of values are entailed by the ascription of handicaps to others? How do the rights shown retarded citizens square with current moral theories? These questions, addressed by our contributors, have important implications for our traditions and ourselves. They are difficult and uncomfortable questions, since providing better care and opportunities makes demands, even on an affluent society. Section I of the volume emphasizes the application of theories of rights and justice to retarded persons. Jeffrie Murphy in his " Rights and Borderline Cases" argues that autonomy rights must be supplemented by a notion of social contract rights, and to do this he draws on 1 ohn Rawls' theory of justice. Since autonomy rights presuppose agency, profoundly retarded persons could not exercise such rights. Murphy argues, however, that it is reasonable to establish certain minimum levels of security below which no one should fall. Social contract rights reasonably should be provided to those who have special needs, like infants or retarded citizens, for our sakes (to preserve our just institutions) as well as theirs (out of concern for what they feel). In contrast to Murphy, Joseph Margolis argues that no general doctrine of human rights or justice can convincingly be used to give specific shape to the rights of the retarded or any other group. All such general doctrines, Margolis argues, face the following dilemma: Either the principles are so abstract that no specific claims can be drawn from them, or, if specific claims can be derived, they may be incompatible with the actual resources

11 INTRODUCTION xiii or limitations of particular societies. Margolis himself prefers to ground special treatment for retarded persons on liberal principles actually held by particular societies. In a rejoinder Murphy ironically entitles "Do the Retarded Have a Right Not to be Eaten," he charges that without an appeal to rights, Margolis' "liberal principles" cannot justify a distinction between retarded individuals and non-human animals. Despite difficulties with theories of rights, then, Murphy still finds "rights talk" preferable to Margolis' alternative. In his commentary, Tristram Engelhardt underlines Margolis' admission that considerations of consistency can establish strong rights to procedural fairness. He also generalizes Margolis' criticisms of Rawls to all hypothetical choice theories of morality; all such theories, he claims, presuppose substantial moral issues in framing the hypothetical choice situation. He concludes that although we rely on moral traditions to illustrate different values and practices, the ultimate choice among them is not dictated by overarching principles. Anthony Woozley and Cora Diamond address a crucial question: Is our treatment of the retarded a matter of justice or of charity? In discussing this they, like Margolis, question the adequacy of the rights tradition. The preoccupation with rights, they argue, may cause us to neglect compelling needs of retarded persons as unique individuals. Woozley distinguishes between our regard for someone as an individual and as a member of some group each of whose members must be treated in a certain way. There are dangers in becoming so preoccupied with rights that good sense and charity are ignored. In her commentary, Cora Diamond cites examples of attitudes towards retarded persons in 19th-century Russia and the Indian subcontinent where treatment of the retarded was motivated by care and compassion, not out of regard for rights: Diamond concludes that the requirements of justice and charity are closely linked. In Section II Loretta Kopelman defends the view that all humans merit respect. But 'respect' cannot be understood here as 'esteem' or require any individual features (such as intelligence, or moral personality). Rather, we respect their status as fellow-beings for their sakes as well as ours. This kind of respect is illustrated by the moral obligation to justify ascriptions of handicaps. Fulfilling this requirement shows a respect we think rational whatever the capacity of the individual evaluated. Uke Woozley, she criticizes Rawls' discussion of the retarded. She argues that Rawls takes respect for persons as basic and fails to give a plausible account of why the severely retarded are rights-bearers. In his commentary, Stuart Spieker agrees that interpersonal relationships are crucial, but argues that an attitude of respect is

12 xiv INTRODUCTION always tied to a concept of reciprocal personal agency. Spieker distinguishes between a principle of respect and an attitude of respect, where the attitude of respect requires agency and reciprocity. Though severely retarded individuals cannot coherently claim a right to our attitude of respect, Spieker argues, one can act from a principle of respect and thus it may be argued that we have obligations to them nonetheless. Laurence McCullough questions whether special treatment for the retarded must be purchased at the costly price of a general loss of independence and respect for them as persons. He argues that this price need not be paid if we replace a "fixed state" definition of handicaps for a developmental or "process oriented" model, and if we determine competency less globally as related to specific tasks. By more clearly delineating kinds of disability included in mental retardation, McCullough claims, we can justify provision of special treatment without wide-ranging loss of moral status. In commenting on this essay, Robert Holmes questions whether McCullough has, as he claims, found a conceptual muddle at the heart of the definition of mental retardation. Holmes also argues that despite McCullough's concern to defend the interests of retarded persons, he has, in fact, committed himself to the mistaken view that diminished moral status (that is, loss of rights and responsibilities) is associated with mental retardation. Section III of the volume explores issues in theology and philosophy of religion. Robert M. Adams, in "Must God Create the Best?", confronts in a theoretical way a question that occurs to many families who first learn they have a retarded child. A first response of many is angrily to question why God has permitted this to occur. Adams rejects the principle, "If a perfectly good moral agent created any world at all, he would have to create the best world that he could create." Adams argues that from the Judaeo-Christian standpoint, creation of a less excellent world is consistent with perfect goodness, since it can be explained in terms of God's grace in freely choosing to love creatures who cannot merit his love. William May emphasizes an interpersonal or relational account of valuing retarded persons which is grounded in the significance of parenting and bonding. May rejects easy sentimentality in exploring the nature of "the ordeal" of detachment, transition, and attachment to a retarded child. His rich descriptions support his view that "acceptance", a word popular in the literature on retarded children, is too simplistic a notion to capture the complexities and ambiguities of the process. Praising May for the power and persuasiveness of his essay, commentator Larry Churchill calls it a portrait of, rather than an argument for, a position. This is meant less as a criticism

13 INTRODUCTION XV than as a call for further study, elaboration and justification. Churchill applauds May's effort to bring the experience of parents in caring for retarded children to the forefront of discussions about valuing the retarded. John Moskop reviews approaches to retarded persons offered by theologians Joseph Fletcher and Stanley Hauerwas. Moskop criticizes Fletcher's singleminded concern to prevent retardation for its insensitivity to the worth and needs of present and future retarded persons. Though more sympathetic to Hauerwas' conception of retarded children as gifts from God, Moskop is concerned about a question Hauerwas does not discuss, namely, "Why does God create retarded persons?" Reflection on this question leads him to suggest that God's special concern for retarded children can be affirmed without asserting that God wills that they be retarded. In response, Churchill claims that Moskop imposes the philosophical problem of evil on a foreign theological context. To support this claim, Churchill presents other approaches to this problem which he finds more congenial to Hauerwas' own confessional point of view. In Section IV, Michael Kindred reviews the legal treatment of mentally retarded persons during this century. He identifies three periods marked by different legal approaches. In the first, lasting well into the 1960's, legal rights for retarded persons were generally neglected by the courts. In the second period, the 1970's, the courts examined issues of due process and equal protection for the retarded. As part of civil rights reform, courts brought recognition of significant rights for the retarded in the areas of education, involuntary institutionalization and habilitation. More recent and restrictive rulings by the U.S. Supreme Court, however, suggest to Kindred that a third period has begun. These rulings, he argues, constitute a retreat from the sweeping reforms and regulations introduced in the 1970's. Barbara Levenbook examines possible philosophical justifications for restricting the legal rights of retarded persons, especially rights to freedom and self-determination. Though they have been frequently used, she argues that principles of paternalism and distributive justice are probably not adequate to justify such legal restrictions. David Rothman raises the fundamental question of who is best qualified to represent those more severely retarded persons unable to make their own decisions. Rothman argues that professional care-givers, families and lawyers have other interests which may interfere with advocacy for the retarded and concludes that special advocates are the best representatives for retarded persons. He is skeptical about relying too heavily on the good will of individuals and stresses the importance of entitlements to minimum standards.

14 xvi INTRODUCTION In his commentary, psychiatrist-neurologist Gerald Moriarty illustrates some of the different kinds of impairments suffered by retarded persons and notes how these interfere with their ability to control their lives. Moriarty is sceptical of the long-term value of court-ordered plans for the care of retarded persons. In place of adversarial processes, he stresses an atmosphere of cooperation among all those who provide services to the retarded. In the fmal essays of the volume, two physicians, Arthur Kopelman and Theodore Kushnick, raise urgent practical questions regarding the care of retarded persons. Dr. Kopelman points out financial obstacles to providing intensive medical care to seriously ill newborns. Dr. Kushnick stresses the importance of liberal diagnostic testing for the sake of handicapped infants and their families and also to prevent future tragedies. Both physicians lament the present lack of adequate medical and educational support services for the great majority of retarded persons. The essays in this volume thus explore conceptual and philosophical issues of language, attitudes, policies and practices regarding mentally retarded persons. A focus on the relationship between ethical theory and social practices has allowed our contributors to evaluate both theory and practice. We wish to thank them for exploring a largely uncharted area of ethics. February, 1983 LORETTA KOPELMAN JOHN C. MOSKOP