Intellectual Disability and Stigma: Stepping Out from the Margins PDF
Preview Intellectual Disability and Stigma: Stepping Out from the Margins
INTELLECTUAL DISABILITY AND STIGMA Stepping Out from the Margins Edited by KATRINA SCIOR & SHIRLI WERNER Intellectual Disability and Stigma Katrina S cior • Shirli Werner Editors Intellectual Disability and Stigma Stepping Out from the Margins Editors Katrina Scior Shirli Werner Department of Psychology Paul Baerwald School of Social Work University College London and Social Welfare London , United Kingdom Hebrew University of Jerusalem Jerusalem , Israel ISBN 978-1-137-52498-0 ISBN 978-1-137-52499-7 (eBook) DOI 10.1057/978-1-137-52499-7 Library of Congress Control Number: 2016950063 © Th e Editor(s) (if applicable) and Th e Author(s) 2016 Th e author(s) has/have asserted their right(s) to be identifi ed as the author(s) of this work in accordance with the Copyright, Designs and Patents Act 1988. Th is work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfi lms or in any other physical way, and t ransmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Th e use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specifi c statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use Th e publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Printed on acid-free paper Th is Palgrave Macmillan imprint is published by Springer Nature Th e registered company is Macmillan Publishers Ltd. London Foreword Th e stigma of intellectual disabilities is as troubling for people with these disabilities as the impairments that accompany them. Disabilities are socially constructed, representing the interface between dysfunctions that result from disease and obstacles in the community that combined pre- vent people from attaining personally meaningful life goals. Consider the irony: people who learn to master challenges and are ready for work or independent living only to have their community say “no” to their aspira- tions. Stigma, particularly public beliefs that people with intellectual dis- abilities can’t…, is among the greatest of obstacles to self-d etermination. Stigma teaches that people with intellectual disabilities can’t work com- petitive jobs, so why should employers hire them. Th ey can’t develop mature and intimate relationships so should not be allowed to date, marry, or have children. Th e benefi ts of rehabilitation and independent living programs grind to a halt when confronted by community preju- dice promoting can’ts. Just as advocates and experts in rehabilitation have developed innovative ways for people to overcome their dysfunctions to meet personal goals, so they need to develop eff ective strategies to tear down community barriers to these goals. S cior and Werner have assembled a masterful team of scientists and advocates to summarize the state of research on the stigma of intel- lectual disabilities. Parts I and II begin by focusing on what I call the basics, understanding conceptual foundations of stigma and its egregious v vi Foreword impact. Th ey ground their discussion in research methods to make sure prescriptions are based on evidence. Part III segues into the practical. What are eff ective strategies for erasing the stigma? Focusing on the practical refl ects the advocates’ imperative in stigma research. Th e ulti- mate value of investigations on stigma is their utility in tearing down stigma and replacing it with affi rming attitudes (such as hope and self- determination) and affi rming behaviors (reasonable accommodations and community supports). What role does research have in stigma change? After all, neither Mahatma Gandhi in India nor Martin Luther King Jr in the USA had social scientists at their right hand when envisioning and actualizing their journey towards social justice. Th e social inequities wrought by stigma stir the progressive emotions of many. As a result, advocates plunge head- long into eff orts to change stigma. Plunging evokes purpose and energy which is needed to sustain the righteous goals of these eff orts. But plung- ing also reminds us of risk, of what happens when someone dives into the deep end to fi nd it is only three feet deep. Research humbly has the role of guide to the optimism of progressives. Th e interaction between impairments and disabling environments peo- ple with intellectual disabilities face signifi cantly hamper their ability to participate in anti-stigma eff orts, especially when compared to the articu- late leadership of people pressing for civil rights around the globe. As a result, one might ask, “How can a person with an intellectual disability, who may have trouble understanding or communicating about stigma, have an eff ective role in stigma change?” Th is question is NOT meant to promote research that identifi es who can and who cannot participate in this kind of eff ort. Such research in itself is stigmatizing, presupposing that some people lack what’s necessary to pursue social justice for them and their group. Rather, this question refl ects the advocate’s imperative. What reasonable accommodations are necessary so the person with an intellectual disability can fully participate in anti-stigma eff orts? Who therefore drives that anti-stigma agenda? Th ere are many stake- holders: people with disabilities, their family members, service provid- ers, and other progressive members of one’s community. A theme of the chapters in Scior and Werner suggests who should be leading this charge: people with disabilities themselves. As a white male living in the USA, Foreword vii I absolutely endorse African American rights agendas. However, I need to take the back seat in these eff orts. Only African Americans themselves fully know the injustice and must be empowered to correct it. Hence, research on the stigma of intellectual disabilities must be community- based and participatory (CBP). According to principles of CBP research, the most impactful research relies on partnership between the commu- nity aff ected by the phenomenon of concern and experts in methods and analyses. CBP research is especially important for disenfranchised groups—people of color, those with low income, and individuals with intellectual disabilities—who are traditionally left out of the kind of research-based, social decision-making that leads to education, health, and social policy. CBP research changes the scope of research relation- ships. People with lived experience participating in CBP research are full partners in the research enterprise and not relegated to being subjects of study. Th e same should be the case for research in the intellectual dis- ability fi eld. Patrick W. Corrigan Contents Part I Th eory and Concepts 1 1 Toward Understanding Intellectual Disability Stigma: Introduction 3 Katrina Scior 2 Measurement Methods to Assess Intellectual Disability Stigma 15 Shirli Werner Part II Th e Consequences of Intellectual Disability Stigma 29 3 How Stigma Aff ects the Lives of People with Intellectual Disabilities: An Overview 31 Nicole Ditchman, Kristin Kosyluk, Eun-Jeong Lee, and Nev Jones 4 How Stigma Aff ects Us: Th e Voice of Self-advocates 49 Dana Roth, Dorit Barak, and Heli Peretz ix
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