Philosophical Reflections on Disability

PHILOSOPHICAL REFLECTIONS ON DISABILITY

Philosophy and Medicine

For other titles published in this series, go to

www.springer.com/series/6414

VOLUME 104

Founding Co-Editor

Stuart F. Spicker

Senior Editor

H. Tristram Engelhardt, Jr., Department of Philosophy, Rice University,

and Baylor College of Medicine, Houston, Texas

Associate Editor

Lisa M. Rasmussen, Department of Philosophy, University of North Carolina

at Charlotte, Charlotte, North Carolina

Editorial Board

George J. Agich, Department of Philosophy, Bowling Green State University,

Bowling Green, Ohio

Nicholas Capaldi, College of Business Administration, Loyola University,

New Orleans, New Orleans, Louisiana

Edmund Erde, University of Medicine and Dentistry of New Jersey, Stratford,

New Jersey

Christopher Tollefsen, Department of Philosophy, University of South Carolina,

Columbia, South Carolina

Kevin Wm. Wildes, S.J., President Loyola University, New Orleans,

New Orleans, Louisiana

PHILOSOPHICAL

REFLECTIONS

ON DISABILITY

Edited by

D. CHRISTOPHER RALSTON

Rice University, Houston, TX, USA

and

JUSTIN HO

Berkeley School of Law, University of California

at Berkeley, Berkeley, CA, USA

123

Editors

D. Christopher Ralston

Rice University

Dept. Philosophy

6100 S. Main Street MS14

Houston TX 77005-1892

USA

[email protected]

Justin Ho

Berkeley School of Law

215 Boalt Hall

Berkeley, CA 94720-7200

USA

[email protected]

ISBN 978-90-481-2476-3 e-ISBN 978-90-481-2477-0

DOI 10.1007/978-90-481-2477-0

Springer Dordrecht Heidelberg London New York

Library of Congress Control Number: 2009929305

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Preface

This project draws together the various strands of the debate regarding disability in

a way never before combined in a single volume. The volume first of all seeks to

offer a representative sampling of competing philosophical/theoretical approaches

to the conceptualization of disability as such. This theoretical background serves

as a crucial backdrop to the remainder of the book, which addresses such themes

as (1) the complex interplay between disability and quality-of-life considerations,

(2) questions of social justice as it relates to disability, and (3) the personal

dimensions of the disability experience.

Consistent with these general themes, the primary goal of the volume is to bring

together a collection of essays by important scholars in the fields of moral theory,

bioethics, and disability studies to address such specific questions as the following:

• What is the best way to conceptualize disability or theorize about it? Should one

adopt either the “medical model” or the “social model” of disability—or take a

different approach altogether? What are the implications of adopting one model

of disability versus another?

• Are there any identifiable connections between disability and reduced quality of

life? Between disability and suffering? What are their moral implications? What

should we think of such practices as prenatal testing for disability, and/or abortion

on the basis of disability?

• What, if anything, is “owed” to persons with disabilities? Should they be “com￾pensated” for their disability? “Repaired” so as to restore them to a “normal”

level of functioning? Do the philosophically-dominant theories of social justice

(e.g., egalitarian and consequentialist theories that tend to emphasize questions

of distributive justice) offer sufficient resources for addressing the needs and

problems faced by those with disabilities? Or should we look elsewhere (e.g.,

to libertarian theories, virtue-oriented theories, and the like) for the conceptual

resources needed to adequately address questions of social justice and disability?

By explicitly locating the discussion of various applied ethical questions within

the broader theoretical context of how disability is best conceptualized, the volume

seeks to bridge the gap between abstract philosophical musings about the nature

v

vi Preface

of disease, illness and disability found in much of the philosophy of medicine lit￾erature, on the one hand, and the comparatively concrete but less philosophical

discourse frequently encountered in much of the disability studies literature. It also

critically examines various claims advanced by disability advocates, as well as those

of their critics. In this way, this volume is a unique contribution to the scholarly lit￾erature, and also offers a valuable resource to instructors and students interested in

a text that critically examines and assesses various approaches to some of the most

vexing problems in contemporary social and political philosophy.

Houston, TX, USA D. Christopher Ralston

Berkeley, CA, USA Justin Ho

Acknowledgements

We would like to extend our thanks to a number of individuals who were instru￾mental in bringing this project to fruition—in particular, the various contributors;

H. Tristram Engelhardt, Jr.; and the entire Springer team. Special thanks also goes

to Lisa Rasmussen for invaluable advice and guidance along the way.

vii

Contents

1 Introduction: Philosophical Reflections on Disability ........ 1

D. Christopher Ralston and Justin Ho

Part I Concepts and Theories of Disability

2 An Essay on Modeling: The Social Model of Disability . . . . . . . 19

Anita Silvers

3 Ability, Competence and Qualification: Fundamental

Concepts in the Philosophy of Disability . . . . . . . . . . . . . . . 37

Lennart Nordenfelt

4 Disability and Medical Theory . . . . . . . . . . . . . . . . . . . . 55

Christopher Boorse

Part II Disability, Quality of Life, and Bioethics

5 Utilitarianism, Disability, and Society . . . . . . . . . . . . . . . . . 91

Torbjörn Tännsjö

6 Too Late to Matter? Preventing the Birth of Infants at Risk

for Adult-Onset Disease or Disability . . . . . . . . . . . . . . . . . 109

Laura M. Purdy

7 To Fail to Enhance is to Disable . . . . . . . . . . . . . . . . . . . . 123

Muireann Quigley and John Harris

8 Rehabilitating Aristotle: A Virtue Ethics Approach to

Disability and Human Flourishing . . . . . . . . . . . . . . . . . . 133

Garret Merriam

Part III Disability, Social Justice, and Public Policy

9 Equal Treatment for Disabled Persons: The Case of Organ

Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

Robert M. Veatch

ix

x Contents

10 Disability Rights: Do We Really Mean It? . . . . . . . . . . . . . . 169

Ron Amundson

11 Dignity, Disability, Difference, and Rights . . . . . . . . . . . . . . 183

Daniel P. Sulmasy

12 Public Policy and Personal Aspects of Disability . . . . . . . . . . . 199

Patricia M. Owens and Eric J. Cassell

13 Disability and Social Justice . . . . . . . . . . . . . . . . . . . . . . 211

Christopher Tollefsen

14 The Unfair and the Unfortunate: Some Brief Critical

Reflections on Secular Moral Claim Rights for the Disabled . . . . 229

H. Tristram Engelhardt, Jr.

Part IV Personal Voices

15 Neither Victims Nor Heroes: Reflections from a Polio Person . . . 241

Jean Bethke Elshtain

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Contributors

Ron Amundson Department of Philosophy, University of Hawaii, Hilo, Hawaii,

USA, [email protected]

Christopher Boorse Department of Philosophy, University of Delaware, Newark,

DE, USA, [email protected]

Eric J. Cassell Department of Public Health, Weill Medical College, Cornell

University, New York, USA, [email protected]

Jean Bethke Elshtain Divinity School, University of Chicago, Chicago, Illinois,

USA, [email protected]

H. Tristram Engelhardt, Jr. Department of Philosophy, Rice University,

Houston, TX, USA, [email protected]

John Harris Institute for Science, Ethics and Innovation, School of Law,

University of Manchester, Manchester, UK, [email protected]

Justin Ho Berkeley School of Law, University of California at Berkeley,

Berkeley, CA, USA, [email protected]

Garret Merriam Department of Philosophy, University of Southern Indiana,

Evansville, Indiana, USA, [email protected]

Lennart Nordenfelt Department of Medical and Health Sciences, Linköping

University, Linkoping, Sweden, [email protected] ˝

Patricia M. Owens Department of Public Health, Weill Medical College, Cornell

University, New York, USA, [email protected]

Laura M. Purdy Department of Philosophy, Wells College, Aurora, New York,

USA, [email protected]

Muireann Quigley Institute for Science, Ethics and Innovation, School of Law,

University of Manchester, Manchester, UK, [email protected]

D. Christopher Ralston Department of Philosophy, Rice University, Houston,

TX, USA, [email protected]

xi

xii Contributors

Anita Silvers Department of Philosophy, San Francisco State University, San

Francisco, California, USA, [email protected]

Daniel P. Sulmasy, MacLean Center for Clinical Medical Ethics, University of

Chicago, Chicago, Illinois, USA, [email protected].

Torbjörn Tännsjö Department of Philosophy, Stockholm University,

Stockholm, Sweden, [email protected]

Christopher Tollefsen Department of Philosophy, University of South Carolina,

Columbia, South Carolina, USA, [email protected]

Robert M. Veatch Kennedy Institute of Ethics, Georgetown University,

Washington, DC, USA, [email protected]

Author Biographies

Ron Amundson, Ph.D. is Professor of Philosophy at the University of Hawaii at

Hilo. His research is in the history and philosophy of evolutionary biology, and the

concept of biological normality. His book The Changing Role of the Embryo in

Evolutionary Thought was published by Cambridge University Press in 2005.

Christopher Boorse, Ph.D. is Associate Professor of Philosophy at the University

of Delaware. He is best-known for his work on concepts of health and disease and

on biological function. Besides philosophy of medicine and philosophy of biology,

his research interests are in ethics and law.

Eric J. Cassell, M.D., M.A.C.P. is Emeritus Professor of Public Health at Weill

Medical College of Cornell University and Adjunct Professor of Medicine at

McGill University. His writings center on moral problems in medicine, the care of

the dying and the nature of suffering. He is married to Patricia M. Owens, an

expert on disability policy.

Jean Bethke Elshtain, Ph.D. is Laura Spelman Rockefeller Professor of Social

and Political Ethics in the Divinity School at the University of Chicago. A political

philosopher whose task has been to show the connections between our political and

ethical convictions, she also holds appointments in the Department of Political

Science and on the Committee on International Relations. She is the author, most

recently, of Sovereignty: God, State, and Self, her Gifford lectures.

H. Tristram Engelhardt, Jr., M.D., Ph.D. is Professor of Philosophy at Rice

University and Professor Emeritus at Baylor College of Medicine.

John Harris, D.Phil. is Lord David Alliance Professor of Bioethics at the School

of Law of the University of Manchester. He is joint Editor-in-Chief of The Journal

of Medical Ethics, the highest impact journal in medical and applied ethics. He is

also Research Director for the Institute of Science, Ethics and Innovation, which

focuses on the ethical questions raised by science and technology in the 21st

century.

Justin Ho, M.A. is a law student at the Berkeley School of Law of the University

of California at Berkeley.

xiii

xiv Author Biographies

Garret Merriam, Ph.D. is Assistant Professor of Philosophy at the University of

Southern Indiana. He holds a Bachelor of Arts degree from the University of

California-Davis, as well as a Master of Arts degree and a doctoral degree from

Rice University. Prior to his appointment at the University of Southern Indiana,

Merriam was employed as an assistant professor at Lone Star College in

Kingwood, Texas.

Lennart Nordenfelt, Ph.D. is Professor of Philosophy of Medicine and Health

Care in the Department of Medical and Health Sciences at Linkoping University. ˝

He was also President of the European Society for the Philosophy of Medicine and

Health Care (ESPMH) from 2001–2005. His principal scholarly contributions have

been to action theory, theory of medicine and the theory of health and welfare; his

theory of health draws upon concepts central to action theory.

Patricia M. Owens, B.S., M.P.A. is an expert on disability policy. She was

formerly the Associate Commissioner of Social Security, responsible for the

United State’s Social Security Disability Programs. She has been a senior officer in

the private disability insurance sector, is an advisor on disability issues to both

governmental and private organizations, and serves on the Board of the National

Academy of Social Insurance.

Laura M. Purdy, Ph.D. is Professor of Philosophy and Ruth and Albert Koch

Professor of Humanities at Wells College. Her research encompasses bioethics,

applied ethics, and political philosophy, with particular emphasis on feminist

bioethics. Her work looks especially at new technologies and issues concerning

families and children, focusing on the ethics of sexuality and reproduction.

Muireann Quigley, B.Sc., MB Ch.B., M.A. is a medical doctor and Lecturer in

Bioethics in the Centre for Social Ethics and Policy, and the new Institute for

Science, Ethics, and Innovation, at the University of Manchester. She previously

worked as a Research Fellow in Bioethics and Law at the University of

Manchester. She is working toward a Ph.D. degree, with a focus on the question of

property rights in human tissue.

D. Christopher Ralston, M.A., Ph.D. (cand.) is a doctoral candidate in the

Department of Philosophy at Rice University and an Assistant Managing Editor of

the Journal of Medicine and Philosophy. His research interests include ethics,

bioethics, and the philosophy of medicine. He is currently writing a dissertation on

concepts of disability.

Anita Silvers, Ph.D. is Professor of Philosophy at San Francisco State University.

Daniel P. Sulmasy, O.F.M., M.D., Ph.D. is the inaugural Clinton-Kilbride

Professor of Medicine and Medical Ethics, Professor of Divinty, and Associate

Director of the MacLean Center for Clinical Medical Ethics at the University of

Chicago. He previously held the Sisters of Charity Chair in Ethics at St. Vincent’s

Hospital–Manhattan and served as Professor of Medicine and Director of the

Bioethics Institute of New York Medicine College. He was appointed by

Author Biographies xv

Gov. Pataki to the New York State Task Force on Life and the Law in 2005. He

serves as Editor-in-Chief of the journal Theoretical Medicine and Bioethics, and is

the author of four books: The Healer’s Calling (1997), Methods in Medical Ethics

(2001). The Rebirth of the Clinic (2006) and A Balm for Gilead: Meditations on

Spritiuality and the Healing Arts (2006).

Torbjörn Tännsjö, Ph.D. is Kristian Claëson Professor of Practical Philosophy at

Stockholm University, director of Stockholm Bioethics Centre, and Affiliated

Professor of Medical Ethics at the Karolinska Institutet. During the fall of 2008 he

was a research fellow at The Swedish Collegium for Advanced Study. He is a

Member of the medical ethics committee of The National Board of Health and

Welfare (the Swedish Government agency responsible for the supervision,

evaluation and monitoring of social services, health care and medical services,

dental care, environmental health, and control of communicable diseases).

Christopher Tollefsen, Ph.D. is Professor of Philosophy in the Department of

Philosophy at the University of South Carolina. He has published articles in ethical

theory and medical ethics and is the series editor of Springer’s Catholic Studies in

Bioethics.

Robert M. Veatch, Ph.D., is Professor of Medical Ethics and the former Director

of the Kennedy Institute of Ethics at Georgetown University, where he also holds

appointments as Professor of Philosophy and Adjunct Professor in the Department

of Community and Family Medicine at Georgetown Medical Center. He is the

Senior Editor of the Kennedy Institute of Ethics Journal and a former member of

the Editorial Board of the Journal of the American Medical Association. He served

as an ethics consultant in the preparation of the legal case of Karen Ann Quinlan,

the woman whose parents won the right to forego life-support (1975–76) and

testified in the case of Baby K, the anencephalic infant whose mother insisted on

the right of access to ventilatory support.