The Future of the Disabled in Liberal Society

Hans S. Reinders

Description

The Future of the Disabled in Liberal Society questions developments in human genetic research from the perspective of persons with mental disabilities and their families. Hans S. Reinders argues that when we use terms such as “disease” and “defect” to describe conditions that genetic engineering might well eliminate, we may also be assuming that disabled lives are deplorable and horrific. Reinders points out that the possibility of preventing disabled lives is at odds with our commitment to the full inclusion of disabled citizens in society. The tension between these different perspectives is of concern to all of us as genetic testing procedures proliferate. Reinders warns that preventative uses of human genetics might even become a threat to the social security and welfare benefits that help support disabled persons and their families. Reinders also argues that this conflict cannot be resolved or controlled on the level of public morality. Because a liberal society makes a commitment to individual freedom and choice, its members can consider the diagnostic and therapeutic uses of human genetics as options available to individual citizens. A liberal society will defend reproductive freedom as a matter of principle. Citizens may select their offspring in accord with their own personal values. Reinders concludes that the future of the mentally disabled in liberal society will depend on the strength of our moral convictions about the value of human life, rather than on the protective force of liberal morality. One of the most important aspects of this book is Reinder’s attention to parents who have come to see the task of raising a disabled child as an enriching experience. These are people who change their conceptions of success and control and, therefore, their conceptions of themselves. They come to value their disabled children for what they have to give. Even though disabled children and disabled adults present parents and society with real challenges, the rewards are just as real. This powerful critique of contemporary bioethics is sure to become required reading for those interested in human development, special education, ethics, philosophy, and theology.

Sujets

• Philosophie
• Éthique et morale
• Medical
• PHILOSOPHY
• Médecine
• Ethics

Informations

• Publié par: University of Notre Dame Press
• Date de parution: 15 août 2000
• Nombre de lectures: 0
• EAN13: 9780268178550
• Langue: English
• Poids de l'ouvrage: 10 Mo

Extrait

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Hans S. Reinders

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Notre Dame, Indiana

Copyright ©byÊUniversity of Notre DameÊ
Notre Dame, IN
www.undpress.nd.edu
All Rights Reserved

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Reprinted in

Library of Congress Cataloging-in-Publication Data

Reinders, Hans S.
The future of the disabled in liberal society : an ethical analysis / Hans S. Reinders.
p. cm.— (Revisions)
Includes bibliographical references and index.
ISBN(cloth : alk. paper) — ISBN (pbk.: alk. paper)
ISBN (pbk.: alk. paper)
1. Sociology of disability.. Handicapped—Social conditions.. Handicapped—
Government policy.. Eugenics—Moral and ethical aspects.I. Title.II. Series.
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Contents

Preface

Introduction
1.1 AParadigmatic Shift
1.2 Wideningthe Scope of the Debate I
1.3 Wideningthe Scope of the Debate II
1.4 TheArgument

P A R TO N E
. The‘Liberal Convention’
2.1 TheContext of the Debate
2.2 The‘Liberal Convention’
2.3 Implicationsof Starting with the ‘Liberal Convention’
2.4 Moralityamong Strangers
2.5 Instrumentalism,Formalism, or Conventionalism?
2.6 Beyonda Narrow Conception of Morality
. Geneticsand Prevention in Public Morality
3.1 InitialDistinctions
3.2 ‘MorallyPermissible’ and ‘Morally Required’
3.3 PreventingConception and Preventing Birth
3.4 ‘Impairment’,‘Disability’, and ‘Handicap’
3.5 ‘Disease’and ‘Disability’
3.6 ‘We’ as Individuals and ‘We’ as a Political Community
3.7 TwoQuestions

“The Condition, Not the Person”
4.1 TheCharge of Negative Evaluation
4.2 TheDPC Argument

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>

4.3
4.4
4.5
4.6
4.7

vi

Contents

Actual and Future People
Evaluating Other People’s Lives
Disability and Identity
The Fallacy of Geneticization
What Are Clinical Geneticists Doing?

Disability, Prevention, and Discrimination
5.1 NegativeSide Effects?
5.2 TwoTypes of Reasons
5.3 Discriminationand Exclusion
5.4 Discriminationand the Value of Life
5.5 TheSocial Position of the Disabled
5.6 TheFuture of Disability
5.7 NoWorld without Disabled People

Restrictions on Reproductive Choice?
6.1 ‘FreeChoice’ in Human Reproduction
6.2 Restrictionof Reproductive Freedom?
6.3 TheCharge of Discriminatory Attitudes
6.4 RestrictivePolicies against Selective Abortion
6.5 RestrictivePolicies to Control Genetic Testing
6.6 Degreesof Seriousness?
6.7 TheWeakness of the Liberal Convention

P A R TT W O

The Inclusion of the Mentally Disabled
7.1 TheMoral Standing of Disabled People
7.2 Personsin the Social Sense
7.3 Justiceand Beneficence
7.4 Recipientsof Justice
7.5 PublicMorality as Overlapping Consensus
7.6 TheParasitic Nature of Liberal Morality

Imperatives of the Self
8.1 TwoClaims
8.2 KenzaburoOë:A Personal Matter
8.3 AnInward Voyage
8.4 Himiko’sTheory
8.5 Constancyand Truthfulness
8.6 Accountabilityas Self-Narration

Contents

Responsibility for Dependent Others
9.1 OnAccepting Responsibility
9.2 ‘TheEthical Demand’
9.3 SocialNorms and Moral Judgment
9.4 ‘Lifeas a Gift’
9.5 Conventionand Commitment
9.6 AppropriateMotivations

P A R TT H R E E

vii

The Presumption of Suffering
10.1 ARemaining Question
10.2 ReasonsRegarding Quality of Life
10.3 Waysof Suffering
10.4 Enrichment?In What Way?
10.5 Identification,Not Resignation

The Transformation Experience
11.1 IncoherentViews?
11.2 TwoDifferent Perspectives
11.3 ACapacity for Alienation
11.4 “FromDevastation to Transformation”
11.5 Transformationand the Power to Respond

The Meaning of Life in Liberal Society
12.1 Discoveredor Made?
12.2 SomeConceptual Clarifications
12.3 BricoleursRather Than Engineers
12.4 Cultureas a ‘Context of Choice’
12.5 TheRedundancy of Choice
12.6 Caringfor the Disabled in Liberal Society
12.7 Conclusion

Notes
Bibliography
Index

Preface

Inthe Dutch Association of Bioethics invited me to write an essay on the
ethical implications of human genetics and its possible impact on persons with
mental disability, to be discussed at its annual conference that same year. The
question put before me was “Should we prevent disabled lives?” It was a timely
moment for a discussion of this question, given the extensive debate a few
months earlier in the national media in The Netherlands on the moral issue of
‘selective’ abortion.
A case had been widely publicized of a couple who decided to have a
pregnancy terminated because their future child would have suffered fromretinitis
pigmentosa,a genetic disease that causes severe visual impairment or complete
blindness at an early age. The focus of the debate in this particular case was
whether using genetic testing for reasons of preventing a disabled life implies a
negative evaluation of the lives of handicapped people. This issue of negative
evaluation was relatively new. The most prominent issues in the bioethical
literature thus far raised questions about the rights and duties of ‘primary
agents’ (researchers, doctors, patients, insurance companies, and employers),
agents who use genetic information because they are interested in risk
assessment with regard to health. Dominant themes were the issues of ‘eugenics’ (the
question of whether people may use genetic information for reasons of
enhancing certain desired features in their offspring), of ‘privacy’ (the question to what
extent doctors must respect the private lives of their patients’ families in case
they diagnose a genetic disorder), of ‘non-directivity’ (the question of whether
genetic counseling ought to be guided by particular values about responsible
reproductive choices), of “the right not to know” (the question of whether people
at risk of genetically affected offspring should seek information about possible
future risk for their children), and of “the right to health care provisions” (the
question of whether health insurance premiums may be adjusted for the carriers
of genetic disorders).
Much less attention has been paid to a different kind of question, namely,
how genetic testing affects our views of people whose lives may be indirectly

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Preface

implicated, i.e., whether genetic testing implies a negative evaluation of the
lives of disabled people. Apparently, the general opinion was that there is not
much to be discussed here. Who would like to be disabled anyway? One can
only speculate about reasons for the absence of serious discussion of this
question, but the influence of ‘free choice’ would be an important factor, together
with popular views on the burden of living a disabled life. Whenever the
disabled appear in the bioethical literature, their existence appears as part of what
seems to be the problem.
Having worked for a number of years in the area of ethics andmentaldisability—
which is the primary concern of the present book—I took the invitation of the
Dutch Association of Bioethics to be an acknowledgment of shifting interests. As
a matter of fact, for me, moving into that largely unexplored area meant moving
out of the field of bioethics as it has been understood over the last thirty years.
The medical paradigm that dominated the bioethical agenda not only renders
the existence of disabled people intrinsically problematic, it turns to ‘prevention’
as the obvious solution to the problem. It is this obviousness that I wanted to
question. In looking at the issue of genetics and prevention from the perspective
of the mentally disabled, I seek to press a different set of questions, for example,
to what extent mentally disabled are threatened by conceptions of the human
good that turn their existence into a ‘problem’, orwhether genetic testing paves
the way for a form of biological perfectionism that is dangerous to people whose
bodies are deemed imperfect. To raise such questions, I believe, is in itself an
important contribution to public debate.
The present text has many subtexts, however, not unlike other texts on
ethics, be they philosophical or theological. One subtext is the continuing
debate concerning the strengths and weaknesses of liberal morality that dominates
contemporary society. Another subtext, closely related to this one, is the debate
about how moral argument in the public sphere relates to conceptions of the
human good. Both of these subtexts determine the construction of the main
argument as well as the composition of the book. The main argument is that
people with mental disability and their families have reasons to be worried
about their future in liberal society. The rapid proliferation of genetic testing
may have discriminatory effects, I will argue, because it brings the birth of
disabled children within the focus of ‘reproductive choice’, which makes their
parents answerable to the charge of ‘irresponsible behavior’.
Although liberal democracy is often and widely applauded for its stance
against discrimination, its options for protecting disabled citizens against the
possibly discriminatory effects of medical genetics will appear surprisingly
weak. If anything, adequate moral support for disabled persons will depend on
a particular kind of moral life rather than on public policies installed by liberal
democracy. That is to say, the democratic state will be able to sustain adequate

Preface

xi

support