Human Rights and Disability Advocacy PENNSYLVANIA STUDIES IN HUMAN RIGHTS Bert B. Lockwood, Jr., Series Editor A complete list of books in the series is available from the publisher. Human Rights and Disability Advocacy Edited by Maya Sabatello and Marianne Schulze UNIVERSITY OF PENNSYLVANIA PRESS PHILADELPHIA Copyright © 2014 University of Pennsylvania Press All rights reserved. Except for brief quotations used for purposes of review or scholarly citation, none of this book may be reproduced in any form by any means without written permission from the publisher. Published by University of Pennsylvania Press Philadelphia, Pennsylvania 19104- 4112 www .upenn .edu /pennpress Printed in the United States of America on acid- free paper 10 9 8 7 6 5 4 3 2 1 Library of Congress Cataloging- in- Publication Data Human rights and disability advocacy / edited by Maya Sabatello and Marianne Schulze — 1st ed. p. cm. — (Pennsylvania studies in human rights) Includes bibliographical references and index. ISBN 978-0-8122-4547-9 (hardcover : alk. paper) 1. People with disabilities—Civil rights—History. 2. People with disabilities—Legal status, laws, etc.—History. 3. Human rights advocacy—History. 4. Convention on the Rights of Persons with Disabilities and Optional Protocol (2007 March 30) 5. Non- governmental organizations—Political activity. 6. Civil society. I. Sabatello, Maya. II. Schulze, Marianne, 1975–. III. Series: Pennsylvania studies in human rights. HV1568.H855 2013 323.3—dc23 2013020966 Worse than not seeing and not hearing is not to be seen and not to be heard. —Helen Keller This page intentionally left blank CONTENTS List of Abbreviations ix Foreword xi Don MacKay Preface xv Ron C. McCallum AO Introduction 1 1. A Short History of the International Disability Rights . Hodgson Movement 13 Maya Sabatello 2. Our Lives, Our Voices: People with Intellectual Disabilities and Th eir Families 25 Anna MacQuarrie and Connie Laurin- Bowie 3. Living in the Community, Access to Justice: Having the Right Makes All the Diff erence 45 Tirza Leibowitz 4. Inclusion or Choice? Securing the Right to Inclusive Education for All 58 Belinda Shaw 5. An Eye Toward Eff ective Enforcement: A Technical- Comparative Approach to the Draft ing Negotiations 70 Tara J. Melish viii Contents 6. Children with Disabilities 97 Gerison Lansdown 7. Women with Disabilities: Th e Convention Th rough the Prism of Gender 113 Mi Yeon Kim 8. Including Deaf Culture and Linguistic Rights 131 Liisa Kauppinen and Markku Jokinen 9. Imagine: To Be a Part of Th is 146 Lex Grandia 10. Indigenous People with Disabilities: Th e Missing Link 157 Huhana Hickey 11. At the United Nations . . . “ Th e South Also Exists” 170 Pamela Molina Toledo 12. Voices Down Under: An Australian Perspective 188 Heidi Forrest and Phillip French 13. Monitoring the Convention’s Implementation 209 Marianne Schulze 14. Th e Role of National Human Rights Institutions 222 Andrew Byrnes 15. Th e New Diplomacy 239 Maya Sabatello Notes 259 List of Contributors 289 Index 295 Ac know ledg ments 303 ABBREVIATIONS AHC/Ad Hoc Ad Hoc Committee on a Comprehensive and Integral Committee International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities APF Asia Pacifi c Forum of National Human Rights Institutions Bangkok Draft Bangkok Draft : Proposed Elements for a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities . Hodgson CAT Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment CEDAW Convention on the Elimination of All Forms of Discrimination against Women CICC Co ali tion for the International Criminal Court CESCR UN Committee on Economic, Social and Cultural Rights CRC Convention on the Rights of the Child CRESOR Corporation of Real Citizenry of the Deaf in Chile CRPD / Convention on the Rights of Persons with Disabilities the Convention CSIE Centre for Studies on Inclusive Education CSO(s) civil society or ga ni za tion(s) DPO(s) disabled people’s organizations DRI Disability Rights International ECOSOC United Nations Economic and Social Council GA United Nations General Assembly GRULAC Group of Latin American and Ca rib be an Countries ICBL International Campaign to Ban Landmines