Valuing Profoundly Disabled People: Fellowship, Community and Ties of Birth

170 Pages·2018·1.047 MB·English

by  John Vorhaus

Valuing Profoundly Disabled
People
In this clearly and crisply written work on significant cognitive disability and
philosophy, John Vorhaus lays out the central issues in an accessible manner
without sacrificing philosophical precision. Along with his keen observations
and insights, he gives us real cases to learn from as we debate the core philo­
sophical issues raised by cognitive disability. He thereby provides a sort of
“empirical philosophy,” one that disengages from empty speculation and bases
its arguments on the actual voices of carers who must speak both for themselves
and those who simply cannot speak for themselves.
—Eva Feder Kittay, Distinguished Professor of Philosophy,
Stony Brook University, NY, USA
Vorhaus’ book affirms the importance of taking seriously the complex, embod­
ied lives of people with profound cognitive disabilities. In exploring the mean­
ing of dignity, respect, dependency, and citizenship, Vorhaus places disability
at the center of fundamental questions about justice and the moral commu­
nity. Against a philosophical backdrop that has too often marginalized and dis­
counted people with profound disabilities, this book serves as an invitation and
an exhortation to reflect upon what it means to share in a common, human life.
—Licia Carlson, Professor of Philosophy,
Providence College, Providence, RI, USA
In this “must­read” monograph, John Vorhaus examines important philosoph­
ical arguments bearing on whether profoundly disabled people can benefit
from the growing public policy effort to extend ordinary social opportunity
to disabled persons. In addition to his strong grasp of the relevant literature in
ethics, political philosophy, and ontology, Vorhaus brings evidence, insight, and
commitment from his empirical work with profoundly disabled individuals to
this philosophical project. The pioneering picture that emerges acknowledges
a variety of philosophical approaches, including a carefully and insightfully
crafted one that is Vorhaus’ own original contribution.
—Anita Silvers, Professor and Chair, Philosophy Department,
San Francisco State University, USA
Growing numbers of human beings live with profound and multiple learning
difficulties and disabilities. Exploring the moral, social and political implications
of this trend, Valuing Profoundly Disabled People addresses questions that are high
on policy and practice agendas in numerous regions around the world, includ­
ing the UK and the EU, the USA and Australasia.
In this important work Vorhaus examines fundamental moral and social ques­
tions about profound disability, and each chapter combines a comprehensive
review of existing literature with thought­provoking and original philosophical
arguments. Vorhaus argues that there is a pressing need to consider the moral
and political claims of people whose lives are characterised by extensive impair­
ments, dependency and vulnerability. The book prompts readers to reflect on
complex issues relating to the practices of caring, teaching and treating people
with profound disabilities in contexts such as education, health care and social
policy.
Providing a much­needed contribution to the field, this book will be of
interest to postgraduates, academics and researchers in a number of distinct and
interrelated fields, including disability and impairment, human rights, philoso­
phy, sociology, health and social policy and education. The book will also be of
great interest to practitioners and policy makers seeking to promote the aims of
realising human potential and respecting disability.
John Vorhaus is Professor of Moral and Educational Philosophy at University
College London, Institute of Education, UK. His research focuses on the moral
and political status of vulnerable groups of people, including people with dis­
abilities and dementia. He published Giving Voice to Profound Disability in 2015
(Routledge).
Valuing Profoundly Disabled
People
Fellowship, Community
and Ties of Birth
John Vorhaus
First published 2018
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
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Routledge is an imprint of the Taylor & Francis Group, an informa
business
© 2018 John Vorhaus
The right of John Vorhaus to be identified as author of this work
has been asserted by him in accordance with sections 77 and 78
of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted
or reproduced or utilised in any form or by any electronic,
mechanical, or other means, now known or hereafter invented,
including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from
the publishers.
Trademark notice: Product or corporate names may be trademarks
or registered trademarks, and are used only for identification and
explanation without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
A catalog record for this book has been requested
ISBN: 978-1-138-88800-5 (hbk)
ISBN: 978-1-315-71375-5 (ebk)
Typeset in Bembo
by Apex CoVantage, LLC
Dedicated to people with profound cognitive
impairments and to those who look after, care for,
teach and nurse them.

Contents
Acknowledgements viii
1 Introduction 1
2 Our fellow creatures 12
3 Sharing in a common life 33
4 Respect and identification 49
5 Human dignity 69
6 Capability, functioning and freedom 84
7 Dependency 97
8 Citizenship: the right to vote 118
9 Our fellow creatures revisited 134
10 Afterword 143
Appendix 147
Bibliography 149
Index 157
Acknowledgements
All writers have a large debt to those who have gone before them. In my case,
I doubt I would have embarked on this study were it not for the pioneering
efforts of numerous women, and in particular Paula Boddington, Licia Carlson,
Eva Kittay, Martha Nussbaum, Chrissie Rogers, Anita Silvers and Lorella Terzi.
My friend and colleague Sarah Richmond would doubtless be surprised were
she to know how often I asked myself, of some argument I was working on,
whether she would ever give it the time of day. I have learned a good deal from
the work of male philosophers too, notably Adam Cureton, Raymond Gaita,
Logi Gunnarson, Stephen Mulhall, Amartya Sen, Simo Vehmas and David Was­
serman. I have perhaps learned most from the writing of Jeff McMahan, whose
views on people with profound disabilities are often a long way from my own,
but whose pellucid writing and imaginative, remorseless pursuit of argument
provides a formidable and inspiring example to anyone writing about ethics
and disability.
I received helpful suggestions from philosophers and students at the National
and Kapodistrian University of Athens, University of Birmingham, University
College Dublin, University College London, University of New South Wales,
University of Roehampton, University of Southampton and Syracuse Uni­
versity; and from Alice Baderin, John Baker, Ruth Cigman, Lucy Series, Paul
Standish, John White, Patricia White and Rowan Williams.
This book is about people whose profound cognitive impairments would
prevent them from understanding one word of what is written here. Although
I rarely discuss individual cases,1 I have learned far more than might be appar­
ent from observing fragments of their lives, in homes and classrooms, and from
talking with many kind and good people who provide round the clock loving
and devoted care.
My wife, Jennifer, and my children, Elise and Liesel, have good­naturedly put
up with the many hours I have given to this book rather than to them. One
hopes it was worth it, although that is one enquiry it might be better not to
pursue very far. In any case, not much would ever have been written were it not
for the constant love and support of my family.
Acknowledgements ix
Finally, I would like to express my gratitude to Jennifer Dixon, Michael Reiss
and Sarah Richmond for their insightful comments on the entire draft, which
should contain many fewer errors and infelicities as a result of their generous
efforts.
Permissions
Some parts of the book are developed from material that I have published pre­
viously, although much of this material has been extensively revised. I am grate­
ful to Routledge for kind permission to use extracts from my 2016 monograph,
Giving Voice to Profound Disability: Dignity, Dependence and Human Capabilities,
and to editors and publishers for kind permission to reprint revised versions of
the following articles:
‘Sharing in a common life: People with profound and multiple learning dif­
ficulties’, 2015a, Res Publica, 22: 1–19.
‘Dignity, Capability and Profound Disability’, 2015b, Metaphilosophy 46:
462–478.
‘Capability, Freedom and Profound Disability’, 2013, Disability and Society,
28: 1047–1058.
‘Disability, Dependency and Indebtedness’, 2007, Journal of Philosophy of Edu-
cation, 41: 29–44.
‘Respecting Profoundly Disabled Learners’, 2006, Journal of Philosophy of
Education, 40: 313–328.
‘Citizenship, Competence and Profound Disability’, 2005, Journal of Philoso-
phy of Education, 39: 461–475.
Note
1 I do so in a separate volume: Vorhaus 2016.