Intellectual Disability and the Right to a Sexual Life: A Continuation of the Autonomy/Paternalism Debate

193 Pages·2018·1.172 MB·English

by  Simon Foley

Intellectual Disability and
the Right to a Sexual Life
One of the perennial political/philosophical questions concerns whether
it is ever justifiable for a third party to paternalistically restrict an adult’s
freedom to ensure their own, or society’s, best interests are protected.
Wherever one stands on this debate, it remains the case that, unlike their
non-impaired contemporaries, many intellectually disabled adults are
subjected to a paternalistic regime of care. This is particularly true regarding
members of this population exercising more control of their sexuality.
Utilizing rare empirical data, Foucault’s theory of power and Kristeva’s
concept of abjection, this work shows that many non-disabled people—
including family members—hold ambivalent attitudes towards people with
visible disabilities expressing their sexuality. Through a careful examina-
tion of the autonomy/paternalism debate, this is the first book to provide an
original, provocative, and philosophically compelling analysis to argue that
where necessary, facilitated sex with prostitutes should be included as part
of a new regime of care to ensure that sexual needs are met.
Intellectual Disability and the Right to a Sexual Life is essential reading
for scholars, students and policy-makers with an interest in philosophy, so-
ciology, political theory, social work, disability studies, and sex studies. It
will also be of interest to anybody who is a parent or a sibling of an adult
with an intellectual disability and those with an interest in human rights and
disability more generally.
Simon Foley of QUB Belfast has taught Sociology in various universities
throughout the United Kingdom and the Republic of Ireland for the past
10 years. He has published widely on issues of sexuality, social theory, and
social change, and is an acknowledged international expert on the sociology
of disability.
Routledge Advances in Disability Studies
www.routledge.com/Routledge-Advances-in-Disability-Studies/book-series/
RADS
Changing Social Attitudes Toward Disability
Perspectives from Historical, Cultural, and Educational Studies
Edited by David Bolt
Disability, Avoidance and the Academy
Challenging Resistance
Edited by David Bolt and Claire Penketh
Autism in a De-centered World
Alice Wexler
Disabled Childhoods
Monitoring Differences and Emerging Identities
Janice McLaughlin, Edmund Coleman-Fountain and Emma Clavering
Intellectual Disability and Being Human
A Care Ethics Model
Chrissie Rogers
The Changing Disability Policy System
Active Citizenship and Disability in Europe Volume 1
Edited by Rune Halvorsen, Bjørn Hvinden, Jerome Bickenbach, Delia Ferri
and Ana Marta Guillén Rodriguez
Intellectual Disability and the Right to a Sexual Life
A Continuation of the Autonomy/Paternalism Debate
Simon Foley
The Changing Disability Policy System
Active Citizenship and Disability in Europe Volume 2
Edited by Rune Halvorsen, Bjørn Hvinden, Jerome Bickenbach, Delia Ferri
and Ana Marta Guillén Rodriguez
Intellectual Disability and
the Right to a Sexual Life
A Continuation of the
Autonomy/Paternalism
Debate
Simon Foley
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 Simon Foley
The right of Simon Foley 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
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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
Names: Foley, Simon, author.
Title: Intellectual disability and the right to a sexual life: a
continuation of the autonomy/paternalism debate / Simon Foley.
Description: Abingdon, Oxon; New York, NY: Routledge, 2017. |
Series: Routledge advances in disability studies | Includes
bibliographical references and index.
Identifiers: LCCN 2017013294
Subjects: LCSH: People with mental disabilities. | People with
mental disabilities—Sexual behavior. | Sexual ethics. | Sociology of
disability.
Classification: LCC HV3004 .F75 2017 | DDC 306.7087/4—dc23
LC record available at https://lccn.loc.gov/2017013294
ISBN: 978-1-138-62824-3 (hbk)
ISBN: 978-1-315-21073-5 (ebk)
Typeset in Times New Roman
by codeMantra
Contents
Acknowledgements vii
Introduction 1
What is an intellectual disability? 2
The focus on Down syndrome 4
1 The who, the what and the why 9
Research methodology 9
The research populations 10
Interviewing people with intellectual disability 13
The focus group method 14
The contested politics of researching disability 17
My conceptual framework 24
Ideological affiliations 27
2 The autonomy/paternalism debate 36
Introduction 36
The autonomy/paternalism debate 36
Historical and cultural discourses of sexuality 41
The focus on genital sex explained 42
The dangerous discourse of sexual expression 43
Liberal society and changing sexual mores 44
The parental perspective 46
Facilitated sex 48
Conceptualising disability 51
Normalisation/SRV 54
My conceptual framework 60
The Foucauldian framework 60
The psychoanalytical framework 63
vi Contents
3 Research findings and analysis: the parental perspective 67
Introduction 67
Interviews with the mothers and analysis of the findings 70
Interviews with adults with Down syndrome 113
Conclusions 128
4 Third-rail sexual politics under scrutiny: the question
of facilitated sex 131
Focus group findings 131
Focus group analysis 135
5 A modest proposal regarding the normalisation of facilitated sex 142
Introduction 142
Ideological critiques in form and content 144
The three faces of power debate 149
Conclusion 155
6 Conclusions 157
References 165
Index 179
Acknowledgements
As with most nominally individual achievements, the writing of this book
did not take place within a social vacuum. To this end, I would like to thank
the following people for their contribution to its completion. First among
equals in this regard is the vital emotional and intellectual succour provided
by Dr Jen Goddard of QUB. I am also deeply grateful to the respondents
who gave so generously of their time and insights and without which this
book would have obviously not taken the form it does. Last but not least,
I want to acknowledge the supportive role played by my family—both that
which I was born into and that which I have since had a hand in creating.
Regarding the former, the fact that I have a sister with Down syndrome and
the fact that my mother has spent most of her adult life fighting to improve
the quality of life led by people with Down syndrome remain constitutive
factors in shaping my professional academic trajectory. Regarding the latter,
I want to especially thank my very young, and very demanding, children for
unwittingly providing me with the stimulus to meet the very rigid writing
deadlines they, again unwittingly, effectively put in place.
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Introduction
Why another academic book on the issue of intellectual disability and sex-
uality? Hopefully, the prospective reader will not be asking themselves this
question. However, if they are, my response takes multiple forms. Firstly,
I do not think one can have enough books on this vital, and still, from certain
perspectives, underexplored subject matter. This is especially the case in ob-
serving the nature of the current sexual status quo for intellectually disabled
adults. In contemporary western society, to be intellectually disabled is to
be infantilised and to be infantilised is to be desexualised. Amongst all the
populations subsumed under the intellectual disability umbrella term, one
of the most common to be ascribed the ‘Peter Pan’ (or perennial child) sub-
ject position by third parties is adults with Down syndrome. The prevalence
of this ‘Peter Pan’ meme has bestowed adults with Down syndrome with an
essentialist identity that positions them as disembodied, desexualised legal
subjects. Consequently, the need to challenge this state of affairs is, from a
certain ideological perspective at least, a self-evident affair.
Secondly, there are in fact very few sociological/philosophical books that
specifically focus on the autonomy/paternalism debate as it relates to the
sexuality of intellectually disabled adults. Thirdly, there are in fact very few
such books that care to collect the views of both the intellectually disabled
adults and their parents regarding this matter. Fourthly, as far as can be
established, there are no such books that argue for a normalisation of the
facilitated sex mechanism to ameliorate some of the autonomy/paternalism
dilemmas identified by the respondents I interviewed. Fifthly, there are in
fact very few such books that are not explicitly written from a social model
perspective. As will be explained in detail in the following chapters, the cash
value of such scholarly work usually entails blaming, at some level, the third
party—such as all the mothers I spoke to—who privileges paternalism over
increased freedom for the individual with an intellectual disability. As an
extension of the last point, there are in fact very few such books written
by a professional sociologist who has a sibling with an intellectual disabil-
ity. Such intimate, all-consuming, experiential knowledge of the dilemmas
thrown up by the autonomy/paternalism debate provide, I would suggest,
more realistic insights than some of those proffered by the ‘usual subjects’.