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Learning Disability and Inclusion Phobia

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Learning Disability and Inclusion Phobia Downloaded by [New York University] at 04:41 12 August 2016 Learning Disability and Inclusion Phobia The social position of learning disabled people has shifted rapidly over the last twenty years, from long-stay institutions, first into community homes and day centres, and now to a currently emerging goal of ‘ordinary lives’ for individuals using person-centred support and personal budgets. These approaches pro- mise to replace a century and a half of ‘scientific’ pathological models based on expert assessment, and of the accompanying segregated social administration which determined how and where people led their lives, and who they were. This innovative volume explains how concepts of learning disability, intellectual disability and autism first came about, describes their more recent evolution in the formal disciplines of psychology, and shows the direct relevance of this historical knowledge to present and future policy, practice and research. Goodey argues that learning disability is not a historically stable category and different people are considered ‘learning disabled’ as it changes over time. Using psychological and anthropological theory, he identifies the deeper lying pathology as ‘inclusion phobia’, in which the tendency of human societies to establish an ingroup and to assign outgroups reaches an extreme point. Thus the disability we call ‘intellectual’ is a concept essential only to an era in which to be human is essentially to be deemed intelligent, autonomous and capable of rational choice. Interweaving the author’s historical scholarship with his practice-based experience in the field, Learning Disability and Inclusion Phobia challenges myths about the past as well as about present-day concepts, exposing both the historical continuities and the radical discontinuities in thinking about learn- Downloaded by [New York University] at 04:41 12 August 2016 ing disability. C. F. Goodey is Honorary Fellow at the Centre for Medical Humanities, University of Leicester, having previously held teaching and research posts elsewhere in the UK at Ruskin College, the Open University and University College London Institute of Education. He is also an independent consultant on learning disability services for local government and national organizations. He is the author of A History of Intelligence and ‘Intellectual Disability’: The Shaping of Psychology in Early Modern Europe. Routledge Advances in the Medical Humanities New titles Medicine, Health and the Arts Approaches to the medical humanities Edited by Victoria Bates, Alan Bleakley and Sam Goodman Suffering Narratives of Older Adults A phenomenological approach to serious illness, chronic pain, recovery and maternal care Mary Beth Morrissey Medical Humanities and Medical Education How the medical humanities can shape better doctors Alan Bleakley Learning Disability and Inclusion Phobia Past, present, future C. F. Goodey Doing Collaborative Arts-based Research for Social Justice A guide Victoria Foster Downloaded by [New York University] at 04:41 12 August 2016 Forthcoming titles The Experience of Institutionalisation Social exclusion, stigma and loss of identity Jane Hubert Digital Stories in Health and Social Policy Listening to marginalized voices Nicole Matthews and Naomi Sunderland Learning Disability and Inclusion Phobia Past, present, future C. F. Goodey Downloaded by [New York University] at 04:41 12 August 2016 First published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2016 C. F. Goodey The right of C. F. Goodey 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 Goodey, C. F., author. Learning disability and inclusion phobia : past, present, future / C.F. Goodey. p. ; cm. -- (Routledge advances in the medical humanities) I. Title. II. Series: Routledge advances in the medical humanities. [DNLM: 1. Intellectual Disability--history. 2. Community Integration-- history. 3. Education of Intellectually Disabled--history. 4. Intellectual Disability--classification. 5. Social Marginalization--history. WM 11.1] RC570 362.3--dc23 2015006452 ISBN: 978-0-415-82200-8 (hbk) ISBN: 978-0-203-55665-8 (ebk) Typeset in Times New Roman by Taylor & Francis Books Downloaded by [New York University] at 04:41 12 August 2016 ‘Ahab had cherished a wild vindictiveness against the whale … He at last came to identify with him, not only all his bodily woes, but all his intellectual and spiritual exasperations. … As in his narrow-flowing monomania not one jot of Ahab’s broad madness had been left behind; so in that broad madness not one jot of his great natural intellect had perished. … Now in his heart Ahab had some glimpse of this, namely: all my means are sane, my motive and my object mad.’ Herman Melville, Moby Dick, Chapter 41. Downloaded by [New York University] at 04:41 12 August 2016 This page intentionally left blank Downloaded by [New York University] at 04:41 12 August 2016 Contents A note on terminology viii Acknowledgement ix 1 Introduction 1 2 Exclusion 7 3 Intelligence 32 4Difference 54 5 Causes 79 6 Development 96 7 Assessment 109 8 Autism and its creation 128 9 Autism in context 147 10 Conclusion 163 References 167 Index 179 Downloaded by [New York University] at 04:41 12 August 2016 A note on terminology Several dozen different terms have been used even within the last century. This book employs three of them, occasionally even on the same page. If that seems complicated, it is not my fault. It reflects the real world. In many English-speaking countries the term ‘learning disability’ is restricted to spe- cific issues such as dyslexia or attention deficit, as distinct from more general terms such as ‘intellectual disability’,or‘developmental disability’ which overlaps with physical impairment. However, in the UK where this book was written, all three phrases are for everyday purposes synonymous. Learning disability is the one most often encountered, and is therefore used in the title, and throughout the book wherever the context is neutral. As for ‘intellectual disability’, this tends to be confined to university departments. If I walked into a roomful of people and their families or even local practitioners in this country and asked ‘Is this the intellectual disability session?’ they would think I had stumbled into the wrong room. It is a parti- cularly loaded label. It comes from cognitive psychology, a sub-discipline that has the temporary privilege of telling doctors, other professionals, the academy, and via them the rest of us, what intelligence is and therefore who we are. It encourages us to think that human beings, as a species, are defined exclusively by the capacity for information processing, logical reasoning and abstraction (categories whose basis in reality is, as we shall see, less certain than might be thought), rather than their capacity for, say, beauty, morals, or personal authenticity. I use the term ‘intellectual disability’ in places where those particular categories, or something like them, are being discussed. Downloaded by [New York University] at 04:41 12 August 2016 Finally, when I have actual individuals in mind here, they are ‘people with learning difficulties’. In the self-advocacy movement that is the term they most often want to be known by. If we are going to put people in boxes for the time being, it is the worst label apart from all the rest. Acknowledgement I am grateful to Ingrid Clark, Wilf Clark, Laura Davis, Linda Jordan and Pen Mendonça for supplying vital information, as have many people with learning difficulties and their families who over the years have contributed selflessly (and, it must seem to them, endlessly) to research, and/or who have directly pioneered change. Downloaded by [New York University] at 04:41 12 August 2016 This page intentionally left blank Downloaded by [New York University] at 04:41 12 August 2016 1 Introduction What is learning disability? Any textbook will tell you. What is its place in the broader picture human beings have of each other? That is another question, and answers are needed. Doctors, psychologists, teachers, social workers, advocates, researchers, students, and last but first the people who currently carry the label, their families and friends: all of us need that bigger picture, and the longer view. We can understand practice, policy and research only in the context of time and place. Knowing where we all stand in that picture, where the idea of learning disability came from and where it may be going, is crucial to improving the lives of all of us. Without such an understanding, we operate in the dark. Yet learning disability, as a concept, is usually spoken about as if what it is and what causes it can be taken for granted. Consider mental illness, by way of contrast. Currently its experts are in one of their periodic upheavals about what causes anomalies in the way people think and behave, and how to classify them. Genetic explanations, which have prevailed for a generation or more, are being challenged by a new wave of researchers who are once again doubting whether disorders such as neurosis, paranoia or bi-polar are something that is ‘wrong’ with people in a medical sense, rather than the result of what has happened to them over the course of their lives in society.
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