Intellectual Disability E-Book

Heather Keith

• Herausgeber: John Wiley & Sons
• Kategorie: Geisteswissenschaft
• Sprache: Englisch

Seitenzahl: 434

Veröffentlichungsjahr: 2013

Beschreibung

Intellectual Disability: Ethics, Dehumanization, and a New Moral Community presents an interdisciplinary exploration of the roots and evolution of the dehumanization of people with intellectual disabilities. * Examines the roots of disability ethics from a psychological, philosophical, and educational perspective * Presents a coherent, sustained moral perspective in examining the historical dehumanization of people with diminished cognitive abilities * Includes a series of narratives and case descriptions to illustrate arguments * Reveals the importance of an interdisciplinary understanding of the social construction of intellectual disability

Leseprobe

Contents

Cover

Dedication

Title Page

Copyright

Acknowledgements

Prologue

Why an Interdisciplinary Approach?

Models of Disability Studies

The Roots of Dehumanization

Out of the Darkness

Disability Ethics for a New Age

Part I: The Roots of Dehumanization

Chapter 1: Intellectual Disability

Thinking in Categories

Perceiving People in Context

Why People Act as They Do

Labeling Individuals with Disability

Effects of Labels

Effects on Individuals with Intellectual Disability

Social Construction of Intellectual Disability

Summary

Chapter 2: The Social Construction of Purgatory

In the Beginning

The Growth of Institutions

The Social Menace of Intellectual Disability

Dehumanization

Reflecting on Purgatory: The Danger of Certainty

Chapter 3: A Failure of Intelligence

Individual Differences

Intelligence Testing: The Measurement of Mind

The Mismeasure of Men, Women, and Children

Intelligence Testing on a Mass Scale

Intelligence and Human Nature

Intelligence in Perspective

Chapter 4: The Consequences of Reason

Philosophy and Intellectual Disability

Rational Value and the Birth of Philosophy

Reason and Ethics in the Modern Era

Current Movements in Ethics: Utilitarian Trends and Marginal Cases

Part II: Out of the Darkness

Chapter 5: Defining the Person

The Self in Isolation

Philosophies of Relationality: The Social Self

The Self as Culturally Construed

Chapter 6: Alternative Views of Moral Engagement

American Pragmatism and the Social Nature of Moral Life

Moral Engagement Based on Habit and Character

Moral Engagement Based on Emotion

Moral Engagement Based on Care

Moral Engagement Based on Intelligent Growth

Moral Engagement Based on Capabilities

Caring Capabilities and Disability

Chapter 7: Culture and Intellectual Disability

Race, Ethnicity, Gender, and Disability

Intellectual Disability, Language, and Contemporary Culture

Cross-Cultural Perspectives

Comparative Philosophy and Intellectual Disability

Disability and Academic Culture

Part III: Disability Ethics for a New Age

Chapter 8: Quality of Life and Perception of Self

Defining Quality of Life

A Multidimensional Construct

Measuring Quality of Life

Results of Quality of Life Measurement

Speaking for Oneself: Proxies, Self-Advocacy, and Quality of Life

Quality of Life in Perspective

Chapter 9: Application and Best Practices

Engaging Moral Community

Chapter 10: Epilogue

Changing Public Perceptions

Living in Community: New Orientations for Services

Public Policy and an Improved Quality of Life

Benefits for Research and Scholarship

Valor and Values for a New Age

References

Name Index

Subject Index

For Jamie

This edition first published 2013 © 2013 John Wiley & Sons, Inc.

Wiley-Blackwell is an imprint of John Wiley & Sons, formed by the merger of Wiley’s global Scientific, Technical and Medical business with Blackwell Publishing.

Registered Office John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK

Editorial Offices 350 Main Street, Malden, MA 02148-5020, USA 9600 Garsington Road, Oxford, OX4 2DQ, UK The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK

For details of our global editorial offices, for customer services, and for information about how to apply for permission to reuse the copyright material in this book please see our website at www.wiley.com/wiley-blackwell.

The right of Heather Keith and Kenneth Keith to be identified as the author(s) of this work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher.

Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.

Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought.

Library of Congress Cataloging-in-Publication Data applied for

Hardback ISBN: 978-0-470-67432-1

A catalogue record for this book is available from the British Library.

Cover design by Simon Levy Associates.

Acknowledgements

For introducing me to the humane possibilities of philosophy, I would like to thank Thomas Alexander, Larry Hickman, Eugenie Gatens-Robinson, Charlene Haddock Seigfried, the late Michael Eldridge, Mark Johnson, and other members of the Society for the Advancement of American Philosophy. Thanks to Todd Lekan and Micah Hester for conversations, responses, and enlightening work about philosophy and disability, and to Mag. Cathrin Dorner, of the Schloss Hartheim memorial and education center in Alkoven, Austria, for helping me to understand the complex roots of dehumanization. The philosophy department at Dartmouth College was gracious in hosting me as a visiting scholar during the early stages of this research. I am a better teacher and researcher thanks to my students and colleagues at Green Mountain College, and I especially appreciate the help of library staff members and my enthusiastic undergraduate research assistant, Pragatee Dhakal.

I also thank Ken Keith for introducing me, inside and outside of a classroom, to the diverse nature of humanity and the importance of respect and care for all people, and for continuing to be an important influence on my professional life. And I thank Connie Keith for instilling a desire to be my best self. Steven Fesmire will always have my gratitude for his seemingly undying interest in my intellectual life (as well as our family life), his imaginative work in philosophy, and his patience.

H.E.K.Poultney, VT

First and foremost, my life has been enriched, since the time I was a child, by the friendship and good company of congenial people, too numerous to name, with intellectual disability. I will, however, single out Nancy Ward, whose unabashed honesty deserves unabashed admiration. I will never forget the courage and integrity of the late Shirley Dean, Sara Kramer, and Mark Rapley, who gave their lives to the welfare of people with intellectual disability. Bob Schalock has been a valued friend, collaborator, and sounding board for more than four decades, and for that I will always be grateful. Larry Hinman provided encouragement, good ideas, and congenial conversation, all helping to shape our perspective. I also owe thanks to David Braddock and the Coleman Institute for Cognitive Disabilities at the University of Colorado for access to a wealth of archival material, and to the University of San Diego for support of research leading to this project. Our editor, Matt Bennett, encouraged this project, and we thank him for that. And, as always, Connie Keith continues to make my work and my life better in ways she will never know.

K.D.K.Omaha, NE

Prologue

Why Study Disability?

Any student of history, culture, or science might wonder whether it is anachronistic to study something that may seem to be a shrinking concern. With medical technology, industrialization, state of the art tools for genetic testing, and wider availability of education, we might forecast that disability is, or soon will be, a thing of the past. However, it is these very social goods that require us to continue to investigate what it means to be disabled in our time. For example, one benefit of modern medicine is a longer lifespan, but with an increasingly elderly population come physical and intellectual impairments such as dementia (Halpern, 2008). Susan Wendell (2008) noted that “unless we die young, we are all disabled eventually” (p. 828).

Some educational tools, such as literacy and technology, are increasingly a cause of lower social functioning for individuals who cannot read or manage complicated tasks. In medieval times, an inability to read was not disabling, nor was surfing the Web an essential skill 50 years ago. Today, however, reading and technology use are essential to most kinds of employment and many facets of citizenship, creating disabilities where none may have existed before. New methods of genetic testing during pregnancy beg many ethical questions about what choices parents have regarding the potential for raising children with intellectual challenges. And physical impairment due to wars, such as those in Afghanistan and Iraq, also heightens the importance of studying the effects of disability on quality of life and functioning in society. Though we will primarily discuss intellectual disability in this book, our theoretical frameworks will be interdisciplinary and will also incorporate some work from the broader and appropriately growing field of disability studies. Our aim will be twofold: to present a pluralist, social constructivist view of intellectual disability and its history; and to develop a contextual, pragmatist moral response to complex ethical questions surrounding disability that are increasingly relevant to us all.

Why an Interdisciplinary Approach?

Many authors have written books on intellectual disability. From clinical textbooks to education manuals to historical analyses, there is a wide range of research on disability from both individual and social perspectives. However, most of this work represents fairly specialized approaches within the disciplines of psychology, psychiatry, sociology, or education. Philosophers (appropriately) have very recently begun to consider intellectual disability within fields such as applied ethics and political theory.

Previous work has provided valuable empirical data and theoretical and philosophical perspectives that have illuminated many of the important issues affecting the lives of people with intellectual disability. An interdisciplinary approach, we believe, can extend our understanding and contribute in important ways to scientific and philosophic study and to the development of humane practice and policy. Working together and using research from a variety of disciplines, we suggest that the partnership of psychology and philosophy (which are, of course, only recently distinct fields) provides an interesting and useful approach that values both scientific and ethical analysis. Though we appreciate that specialization is essential to the deep study of any field, issue, or practice, we also believe that bringing specialized work back to a more human level is needed to create positive change in the world. In the introduction to his final work, The Conquest of Mental Retardation, the late social theorist Burton Blatt (1987) argued that specialization without a wider context causes isolation, allowing the public, as well as specialists, to believe that “only a specialist can understand anything about a mentally retarded person” (p. 8), which may lead others in society to assume they have nothing to do with disability. Specialization, then, “causes far greater and more widespread problems than the very ‘difference’ that sets the isolation mechanisms in motion” (p. 8). Blatt believed that making the study of intellectual disability a more natural part of the continuum of human relationships was needed, in addition to more skilled clinical services, in order to improve quality of life. We hope that this volume contributes to a social consciousness and theoretical foundation that integrates rather than isolates.

Three concepts in particular impel us toward an interdisciplinary approach with foundations in psychology and philosophy (both of which are integrally tied to education). First, an approach from multiple disciplines prevents reductionism. Reductionistic approaches are characterized by relying on only one perspective to explain the vast diversity of human experience. For example, some theorists use Freud's work to reduce all, or most, human motivation and behavior to a fairly specific description of the mind. Likewise, some geneticists exclude the influences of cultural experience when claiming that human behavior can be reduced to genetic makeup. In studying ethics, some philosophers limit themselves to one theorist or one theoretical approach, such as deontology (the idea that morality is a matter of intention) or utilitarianism (the idea that morality is a matter of consequences) to address a vast universe of moral questions. Although these varied approaches may be useful to understanding particular aspects of psychology, morality, or education, and you will see some of them explored in depth in this volume, we hope with our approach to create a pluralistic, nonreductionistic understanding of intellectual disability. Studying disability from multiple perspectives makes it less likely that we will have just one or a very few theoretical tools with which to respond to the complexity of human experience.

This perspective has important consequences for the field of disability studies. For example, many theorists and practitioners debate the very concept of “disability” as either something internal to the individual (“impairment”) or external and social, such as a person being made “disabled” by lack of accessibility to buildings or to education. Activists have long argued that a strictly “medical” model of disability (focused on genetics and biology) ignores social structures as they contribute to the inability of individuals to thrive (e.g., Silvers, Waserman, & Mahowald, 1998). On the other hand, Shakespeare and Watson (2001) criticized some aspects of the “social” model of disability, prevalent in British activist movements, which emphasizes social structures that create disability (as opposed to physical impairment as disabling) in individuals, a model which they believe leaves out our embodied nature. Although we will often use a social constructivist approach in our theoretical work here, reducing disability almost entirely to society opens otherwise interesting ideas to a claim of reductio ad absurdum (argument from the absurd), a fallacy which might assume that human embodiment makes little difference to one's ability to function in the world. This claim is obviously problematic. One's genetic structure, biology, and physical nature all combine with one's family, culture, and society to determine one's experience of the world. We hope to explore more pluralistic approaches that avoid a simple choice between the dueling medical and social models, allow for social criticism while also considering the possible contributions of medicine, biology, and education, and appropriately consider the vast and varied influences on our experience of the world.

Second, an interdisciplinary approach between philosophy and psychology ensures a foundation in empirical data. Although theories, stories, and personal perspectives are essential to the study of any aspect of human experience (e.g., Coles, 1989), and will be important in an account of the social construction of disability, the kind of story that we can tell with a foundation in research and data will be more useful in its relevance and persuasiveness. Without empirical evidence, we cannot be sure that even our best theories adequately touch human life. This is especially true in the study of intellectual disability. While our approach will explore theoretical ideas such as social construction and ethics, it will be grounded also in the empirical study of individual ability and quality of life, social policy, history, and culture.

Finally, we suggest that theories, stories, and personal perspectives are essential partners to even the most specialized research. Born out of the desire to know more about our world, philosophy is often characterized by the method of one of its first Western proponents. The Socratic method of asking questions and cultivating virtues of inquiry is the starting place of the most rigorous scientific study. Blatt (1987) noted the importance of social theory to science, which he says “follows rather than leads to the dominant beliefs of an age” (p. 10); and “the data of the clinical field are inextricably bound to the values and beliefs of society as a whole” (p. 7). No course of study, including science, is done in a vacuum. Knowing this in advance, and allowing for the creative interaction of philosophy, history, and culture, will make the empirical study of humanity, as Blatt suggested, a more reasonable and responsible endeavor. Otherwise, we might commit what psychologist and philosopher William James (1950/1890) called the “psychologist's fallacy,” which occurs when we falsely impose our preconceived concepts onto human experience, rather than using critical thinking in our research to explore new possibilities and practices in trying to understand the experiences of others. We will see unfortunate examples of this fallacy in our exploration of the history of intelligence testing. On the other hand, the scientific method, in starting with hypotheses and then trying to falsify them, is the Socratic method.

Socrates, as recorded by Plato (1981/c. 399 BCE), in his philosophical pursuit of wisdom, also knew that the admission of not knowing was as important to research as claims of knowledge. About the politicians of his time, who eschewed both theoretical and empirical foundations to their claims of wisdom (they were more interested in prestige and power), he said that his wisdom was greater because he knew that he did not know everything. Intellectual humility is an essential part of any study of human behavior, nature, and experience. We know that we do not know, but we also know that we are willing to learn diverse and empirically and theoretically rich ideas. Eva Kittay (2010), in her writing on cognitive disability, has argued that we need more “epistemic modesty,” because arrogance about what we think we know impedes our ability to develop responsible theories and practices.

The work of American philosopher, psychologist, and champion of progressive education John Dewey is a prime example of a partnership among disciplines aspiring to solve the problems of his time with both empirical and theoretical study. In the spirit of Dewey (1985/1917), we believe that education, as a social process, emerges out of our best-informed beliefs about human nature and growth. As such, themes in education regarding intellectual disability are integrated throughout the chapters, and not consigned to just one chapter or section.

About philosophy, Dewey (1985/1917) wrote that it “recovers itself when it ceases to be a device for dealing with the problems of philosophers and becomes a method, cultivated by philosophers, for dealing with the problems of men” (p. 46). We hope that what we are embarking on here becomes useful for dealing with the problems of humanity, as well as pointing the way toward progressive practices and policies that will make for a brighter future, not only for people with intellectual disability, but for a society that is also impaired as a result of its own construction of disability.

Models of Disability Studies

The 1990 Americans with Disabilities Act is important not only for its groundbreaking legal protection for individuals in their access to social goods such as political involvement, education, medicine, and the logistics of ordinary life. It also underscores, at least in our best practices, that disability is not merely a matter of individual health or impairment; rather, one's ability to function well in society and have a good quality of life is also a matter of concern for government and other institutions—of society itself. This is something of a change from earlier views of disability based on traits native to the individual. In the case of intellectual disability, the idea that intelligence was a gift from genetics, unchangeable, and therefore easily measured by intelligence testing, allowed doctors, caretakers, and families to assume that patients' impairments could or could not be fixed, an idea which we will explore in depth in Chapter Two. This medical model was contested, especially in the UK, in the 1970s and 1980s by the “social” model of disability, whose proponents assert that the root of disability is not in individuals, but in society itself. In a sense, it is society that disables people through inaccessibility, exclusion in education, and other forms of oppression based on perceived difference. As Blatt (1987) suggested, this model concludes that it is society that is disabled.

Our aim here is influenced by the social model, though we take something of a modified social constructivist view. We fully accept that disability is in part created by social norms and practices, but we also allow that any one model can be reductionistic and limiting. Though the social constructivist model that influences much of our approach obviously involves the study of culture, history, and institutions, we understand that “the social” is itself constructed of individuals in relationships and that sometimes it makes sense to discuss disability (or impairment) on a more individual level. On the other hand, while we concur that individual abilities or impairments are important factors in determining how to help people function more effectively, we will argue that sometimes disabilities are made worse, or even caused, by society's inability to adjust to the complexity of human existence and to create environments where diverse people can thrive. Our attempt to balance the individual and the social will be integral to our development, throughout the volume, of a view of moral community that is flexible, relational, and evolving in accord with our best theories and practices.

Our interdisciplinary, relational approach is philosophically pragmatic, in the fashion of Dewey. While we have a critical view of much historical and some contemporary work in psychology and philosophy, we will also mine this work for rich wisdom about the humane treatment of others and intellectual humility in our own approach. Dewey's (1988/1922) method was to develop a pluralistic moral theory, eschewing reduction to just one set of principles or values (many of which exclude people with intellectual disability, as we will discuss in Chapter Four), while using the best social science research of his time toward democratic politics and education. As we will see in several recent movements in ethics, Dewey believed that the complexity of human nature required that we explore how we ought to behave based on how we do behave. Thus, our best moral theory should emerge from our best practices. Here, we aim to merge good research in psychology with great moral theories, applying both to issues of practice and policy affecting people with intellectual disability and our social environment.

Thus, in this volume, you will find language that highlights a variety of disciplinary, theoretical, and practical approaches. We will discuss disability and impairment, as well as social institutions and individual health and well-being. We will also use a variety of terms for intellectual disability, reflecting and depending on historical eras and conceptions of individuals. Thus, the appearance of such labels as people with disabilities, mentally retarded, mental deficiency, feeble-minded, idiot, imbecile, and moron reflects and conveys the language and understanding of the culture and the authors of various times and places. Though there is some contemporary debate (Shakespeare, 2010) about language regarding individuals (“people with disabilities”) versus some proponents of the social model's use of “disabled people,” we tend to be in accord with the “people first” ideals of recent social movements and their focus on what all humans have in common, first, rather than what divides us. Therefore, we will frequently use “people with disabilities” or “individuals with disabilities,” but also acknowledge that at times it is important to emphasize the “disabled” characteristic of individuals, especially in unpacking social causes of disability. Our goal is thus to investigate the threshold of individual and society, through psychology, moral theory, and educational philosophy, with the aim of creating a better understanding of how our historical and contemporary institutions and thinking have shaped our views of disability, and how those views can be enhanced to be more humane and constructive.

The Roots of Dehumanization

The first four chapters of the book illustrate the nature and scope of dehumanization and its origins in Western culture. We explore how societies have historically viewed intellectual disability, labels, and their effects, and more contemporary understanding of the construct of disability. We examine the ways the culture has viewed the social and treatment needs of individuals with intellectual disability, and the sometimes shameful role of institutions as reflections of social values. Philosophy has also played its role in dehumanization, sometimes, for example, defining as subhuman those whose ability to use language or reason does not meet the threshold philosophers have used to define what it means to be human. And of course traditional conceptions of intelligence and the intelligence testing movement in psychology have played a significant role in the marginalization of people with disabilities and, for a time, relegating them to the dark shadows of eugenics.

Out of the Darkness

The middle section of the volume discusses philosophical and cultural approaches to selfhood with the aim of developing a conception of the moral person that is helpful to ethical theories which embrace diversity and serve more than just a population graced with traditional, testable intelligence. We put forth more expansive and pluralistic moral and political theories from perspectives such as pragmatist ethics, and explore the possibility that such theories are strengthened by, and are fluid enough to grow with, our understanding of an increasingly intellectually diverse population. With these inclusive approaches in mind, we will also explore the intersection of disability with theories of race, gender, popular culture, and cross-cultural experience and philosophy.

Disability Ethics for a New Age

Finally, we will apply our theoretical work to issues such as multidimensional quality of life, genetic testing, our increasingly technological society, and new images of intellectual disability. In the spirit of scholars like Blatt and Dewey, our great theories and best research agendas are worthwhile only if they touch real lives and change society for the better. It is our hope that a new age will bring not only greater complications from technology, genetics, and social norms, but also greater resources in our struggle to rehumanize us all.

Part I

The Roots of Dehumanization

1

Intellectual Disability

History and Evolution of Definitions

Our friend Clyde was a man, according to his case records, with moderate mental retardation. Although he worked in a sheltered employment center, Clyde slipped away from work to smoke cigarettes as frequently as possible, despite his doctor's warnings about their danger to his health. In his free time Clyde liked to visit with relatives who lived nearby, and to ride horses. One of his greatest pleasures was to eat dinner and drink coffee at a truck stop café, where he could imagine himself traveling the open road in a cross-country truck. Clyde was one of those people who can spot an old friend in the crowd nearly anywhere they go; and if he didn't see an old friend, it didn't take Clyde long to make a new one. He always lived near the boundaries of socially acceptable behavior, often taxing the ingenuity and the patience of his family, friends, and caretakers. Yet, despite life's challenges, including myriad health problems and frequent conflict with program staff, friends, neighbors, and others, Clyde never thought of himself as a person with mental retardation. He was just a man trying to get along, to live as well as he could in the circumstances of his own life.

We talk today about people with intellectual disability, at least in part as a departure from former labels that individuals and their advocates came to see as demeaning or dehumanizing (Parmenter, 2011). This reflects a fairly recent change; for example, until 2006 the American Association on Developmental and Intellectual Disabilities (AAIDD) was known as the American Association on Mental Retardation (AAMR), and before that the American Association on Mental Deficiency. That same organization came into existence in 1876 as the Association of Medical Officers of American Institutions for Idiotic and Feeble-minded Persons. As Berkson (2006) observed, the terminology describing what we now call developmental disabilities or intellectual disabilities has typically changed once or twice in each generation. Times change, and so does language—in ways that can be critical to people who are categorized and labeled. So, we might ask, what does it mean to talk about people with intellectual disability, how have we arrived at the words we use to describe them, and how do these words affect our thinking?

Thinking in Categories

The penchant for organizing things (including people) into groups is a natural, universal human tendency. Even when the differences between and among people or objects are subtle or gradual, we tend to draw lines and place them into groups (Macmillan, 1987). Although some categories (e.g., colors, emotional expressions, or geometric shapes) may be universal, the ways people group many other things vary, depending on context or culture. Categories may include objects that possess common characteristics or attributes—the kind of groups that we call concepts; or categories may be used to group people, based on perceived common characteristics—the kind of groups that we call stereotypes. Thus the objects constituting a concept like “chair” have features such as: furniture; has a seat, legs and a back; and useful for people to sit upon (e.g., Matsumoto & Juang, 2008). These characteristics of chairs are the common attributes that define the concept. Similarly, we may group people and form stereotypes according to our perceptions of their salient attributes (e.g., race, sex, abilities, religion, intelligence, nationality).

Categorization results in a tendency to consider each member of the category as equivalent to other members, and different from nonmembers (Rosch, 1978); and stereotypes, according to Allport (1954), are characterized by oversimplified generalizations about the people who belong to the category and may play a role in justification and rationalization of behavior directed toward people who are members of the stereotyped group. Further, categories may be based on taxonomic classification (defined by similar attributes of members of the class) or thematic classification (defined by relations among class members; Markman & Hutchinson, 1984). The latter distinction is key to understanding the foundations of categorization in differing cultural contexts, which, as we will see, is a critical issue for people with intellectual disability.

People with different cultural experience have different grouping styles and they pay attention to different things in their perceptions of groups (Ji, Nisbett, & Zhang, 2004). In Western cultures (such as the US), individuals are likely to group according to perceived specific attributes of group members (taxonomic classification), whereas people of Eastern cultures may be more likely to group members of a class according to their relationships to one another (thematic classification). Chiu (1972), for example, in a study of American and Chinese children, found that the Americans grouped according to such common characteristics as size, while the Chinese grouped according to relationships, such as parent and child. Easterners (e.g., Asians) are also more inclined than people of Western cultures to use external referents and context in their perceptions (Choi, Dalai, Kim-Prieto, & Park, 2003; Chua, Boland, & Nisbett, 2005; Miyamoto, Nisbett, & Masuda, 2006). The latter tendency (external vs. internal referents) also plays a role in how people perceive others in their environmental context, how they judge the behavior of others, and how they think of themselves.

Perceiving People in Context

Do we think of people with intellectual disability in terms of a single defining feature (e.g., intelligence or physical aspects) or do we think of them as they exist as people in relation to family, community, or other aspects of their environmental context? Research on human perception may shed some light on this question. For example, Norenzayan, Smith, Kim, and Nisbett (2002) studied the perceptual patterns of European Americans, Asian Americans, Koreans, and Chinese people whom they asked to identify common characteristics among groups of 20 visual stimuli. European Americans were more likely to make unidimensional judgments (similarity based on a single common characteristic) than were the Asian Americans and East Asians, who made more complex judgments based on patterns of similarity. Kitayama, Duffy, Kawamura, and Larsen (2003) used a different test (a line-drawing task) to evaluate the tendencies of American and Japanese students to attend to specific or whole aspects of a stimulus, and drew a similar conclusion: Americans more often made judgments based on absolute characteristics of the stimulus, and Japanese students were more likely to focus on the relational characteristics of the task.

These findings are interesting, but do they apply to people? Masuda, Gonzalez, Kwan, and Nisbett (2008) provided at least a partial answer in a study involving Caucasian American, African American, Chinese, Japanese, Taiwanese, and Korean participants. The researchers provided instructions in use of the focus and zoom controls on a digital camera, and asked people to take portrait photographs of a model. The Americans made portraits that were more object-oriented and individual-focused, with significantly larger depictions of the face of the model; on the other hand, the Asians' portraits were more context-inclusive, showing the person in relation to the larger contextual background. In previous research Masuda and Nisbett (2001) compared Japanese and American perception and memory using video clips of a complex scene involving objects and background. The Japanese participants were much more likely to be influenced by the background, and they were able to provide much more contextual information than were the Americans. Taken together, these studies suggest that perceptual judgments are intimately related to both immediate context and cultural backdrop—facts that may constitute an important foundation for our judgments of people.

These studies, consistent with many others, suggest that the US, like numerous other Western countries, is a low-context culture, and others, including East Asian and some South American cultures, are high-context. In high-context cultures people tend to be more deeply involved with each other (Hall, 1976), with strong bonds among family members, community, friends, and the general society (Kim, Pan, & Park, 1998). In a low-context culture, people are more highly individualized, relatively less involved with others, and more likely to withdraw or move away from others when things are not going well (Kim et al., 1998). In other words, in the low-context setting the focus is on the individual; in the high-context culture, the focus is on connection to the group. This individual-oriented vs. other-oriented distinction is also apparent in views of the self. People of Western, individualistic cultures view the person as an independent, separate entity; in non-Western collectivistic cultures the self is seen as inseparable from, and interdependent with, important others—family, friends, co-workers (Markus & Kitayama, 1991). We will see this distinction, and its consequences for moral relationships, again in later chapters.

Why People Act as They Do

Perceptions of people and their characteristics are related to the attributions individuals make for the behavior of others. If we think in high-context, interdependent ways, we are likely to emphasize the relation of people to their environment, and the power of the situation, to account for their behavior. On the other hand, if we think in a low-context, independent way, we will be more prone to see the behavior of others as a product of their individual dispositional characteristics—the kinds of characteristics that lend themselves to formation of stereotypes.

The tendency to disproportionately attribute others' behaviors to characteristics of the person (dispositional attributions), even in the face of obvious situational constraints, is pervasive in Western cultures and is known as the fundamental attribution error (also called the correspondence bias; Jones & Harris, 1967; Ross, 1977). However, people of interdependent Eastern cultures are less likely to make the fundamental attribution error, and are instead more inclined to use situational (contextual) attributions to account for the behavior of others (Gilbert & Malone, 1995; Miller, 1984). For example, Americans may describe people whom they know as “irresponsible” or “proud,” while Hindus are more likely to use situational explanations such as social roles or duties (Miller, 1984).

Some evidence suggests that caregivers are more likely to make dispositional attributions for challenging behavior of people with intellectual disability if the disability is mild (as opposed to severe; Tynan & Allen, 2002), and caregivers who perceive individuals to be in control of their own challenging behavior may experience negative emotions toward those individuals (Wanless & Jahoda, 2002). Weisz (1981) found that university students were more likely to attribute failure or low expectancy for success to “insufficient ability” in children identified as “mentally retarded” than in an unlabeled child. And interestingly, Palmer (1979) reported that classroom teachers' attributions for the success of “normal achieving,” “educationally handicapped,” and “educable mentally retarded” children were not affected by background information about the students; however, the teachers' attributions for student failure did show the influence of background information. Information about the students, Palmer suggested, may have led teachers to expect that handicapped and intellectually disabled students would experience academic difficulties.

It should not be surprising therefore, that in American culture individuals may form stereotyped views of groups of people based on perception of salient characteristics of the person, independent of relationships or context. In nineteenth-century America, for example, a common stereotype of the Irish characterized them as obese, violent, and wasteful (Heine, 2012). People with intellectual disability have similarly experienced stereotyping, and the list of labels they have worn is lengthy (e.g., childlike, defective, incompetent, dumb, immature; Beirne-Smith, Patton, & Ittenbach, 1994). When people are labeled, others of course view them differently (Farina, 1982), and the effects of the labels can be powerfully stigmatizing (e.g., Page, 1977), taking on a life of their own (Rosenhan, 1973). What are the labels, popular and professional, that have described individuals with intellectual disability? We recognize, of course, that “individuals with intellectual disability” is also a label that we are choosing to use in this discussion.

Labeling Individuals with Disability

The history of the field of intellectual disability has long included reports of the ancient Greeks' practice of “allowing the mentally deficient to perish, or, as was done in Sparta, of directly exposing them to death—peril” (Barr, 1904, p. 24). However, although the Greeks may have chosen not to rear some infants with physical anomalies (and the evidence for this practice is not as clear as some may presume; Edwards, 1996), we cannot assume that people of the early Greek era would have recognized intellectual disability in the modern sense, especially in infancy (Goodey, 2011). Nevertheless, such scholars as Aristotle and Hippocrates recognized such conditions as epilepsy, and probably mental deficiency (e.g., Whitney, 1949). The vocabulary used by the Greeks to describe the types of infants exposed to death was vague and imprecise (Edwards, 1996), and they thus left no clear labels for intellectual disability. In the Roman era, Latin had several words that have been translated as “mental disability” or “cognitive disability,” and the Roman physician Galen apparently associated what would later be known as “idiocy” with big ears (Evans, 1945). By the end of the second century CE the Mishnah (a gathering of Jewish oral law) used the Hebrew word shoteh to mean “imbecile,” although it has also been translated as “mentally defective” or “mentally deficient” (Berkson, 2006). The practice of labeling people with intellectual disability had been established.

The construct of intellectual disability diverged from the generic idea of mental illness sometime prior to the thirteenth century (Neugebauer, 1996; Stainton, 2001a), although centuries later both “idiots” and “lunatics” still lived in the same asylums (Race, 2002). Thirteenth-century British legal doctrine distinguished between “idiots” and “lunatics” (the former unable to inherit property due to supposed mental deficiency; Clarke, 1975; Rushton, 1988). By the seventeenth century, case reports in Wales sometimes referred to those considered mentally deficient with such labels as “idiot,” “fool,” “not compos mentis” [not of sound mind], and “innocent” (Rushton, 1988, p. 37). Itard (1962/1801), in his account of the storied “wild boy” of Aveyron, discovered at the end of the eighteenth century, referred to the child as a “savage.”

“Idiocy” was recognized in both the law and the religion of Puritan colonial New England (Wickham, 2001), and the colonists also used other terms—“incapashous, simplish, and natural fool” (p. 148)—to refer to idiocy. The term “idiot” was well entrenched from the middle (Howe, 1851) to the end of the nineteenth century (e.g., Bateman, 1897). “Cretin,” sometimes used synonymously with “idiot,” probably dates from the eighteenth century, and was also a French word for Christian—perhaps as a reminder that those with disabilities are nevertheless Christian or human. The British Parliament, in the Mental Deficiency Act of 1913, wrote the term “idiots,” along with “imbeciles,” “feebleminded persons,” and “moral defectives,” into law (Race, 2002). At about the same time Tredgold (1914) proposed use of the term “amentia” (a, without; mens, mind; p. 1) to denote those whose minds had never attained normal development, and American psychologist Henry H. Goddard (1912, 1927) added “moron” to the litany of words used to describe those considered “dull.” The term “retarded” seems to have first occurred in the work of Ayres (1909), who used it to denote children who failed to progress in school, and who simply meant it to refer to intellectual slowness.

Sometimes labels have been idiosyncratic, developed by administrators or professionals to suit their own unique circumstances or time. Blatt and Kaplan (1966), for example, reported a curious misunderstanding that occurred when they could not comprehend an assistant superintendent's discussion of “materials” and “items.” Eventually they realized that, in this particular facility, people with disabilities were “materials” and staff members were “items.” These state administrators used labels to dehumanize not only patients, but paid professionals as well. What, we might ask, are the effects of these labels, for those who are labeled and for those who apply the labels?

Although the term “mental retardation” was in common use in the US for a half century or more (Wolfensberger, 2002), in the early twenty-first century the AAIDD changed the term to “intellectual disability” (Schalock et al., 2007). According to Schalock et al., the construct of disability involves limitations of individual functioning that are a disadvantage to the person and that occur in a social context, and intellectual disability exists within the broader notion of disability. These authors describe an evolution of understanding of disability that recognizes the social construction of disorders, the blurred distinction between social and biological causes of disability, and the multidimensional nature of human functioning. This approach reflects a changing perception of disability from a person-centered trait (“deficit”) to a social-ecological concept reflecting the interaction between person and environment, the role of individualized supports to enhance individual adjustment to environment, and efforts to develop “disability identity” based on such attributes as well-being, pride, and self-worth (Schalock et al., 2007). Current use of the term intellectual disability denotes a changing recognition of the locus of the disability; earlier terms (e.g., mental retardation, mental deficiency) saw the disability as a defect lying within the individual, whereas the current conception suggests that intellectual disability is a state of functioning reflected in the relation between individual and context (Wehmeyer et al., 2008). This recent development reflects a potentially significant departure from labeling as it has existed for most of the history of concern with intellectual disability, and has been incorporated into the most recent procedures for definition and classification (Schalock et al., 2010).

Effects of Labels

Sticks and stones, according to the old saw, may break my bones, but words can never hurt me. Or can they? Consistent with the processes by which humans label all kinds of concepts and people, labels applied to such groups as “retardates” connote generalizations about the people to whom we apply the labels (Goffman, 1963). And labeling has typically suggested deviance (e.g., Becker, 1963; Memert, 1951) and stigma (Edgerton, 1993). People with intellectual disability identities acquire the label because others see them as differing from a culturally defined standard of “normal” intellect (Manion & Bersani, 1987). Investigators have often viewed people with intellectual disability as objects of study, sometimes overlooking the fact that these “objects” are humans with all the feelings, thoughts, opinions, and complexities of experience that characterize any humans (Castles, 1996).

Effects on Individuals with Intellectual Disability

The field of mental retardation, Blatt (1985) argued, has too long perseverated on the “educability” issue, with assignment of labels driving expectancies about the abilities of individuals. Although the categories to which we assign people may be important, they are nevertheless, Blatt asserted, inventions—individuals are retarded because someone (e.g., an agency or organization) said so. The result, according to one person receiving such a label, may be devastating:

The problem is getting labeled as being something. After that you're not really as a person. It's like a sty in your eye—it's noticeable. Like that teacher and the way she looked at me. In the fifth grade—in the fifth grade my classmates thought I was different, and my teacher knew I was different (Bogdan & Taylor, 1976, p. 48).

In a review of literature on the social identity of people with intellectual disability, Beart, Hardy, and Buchan (2005) concluded that the label “intellectual disabilities” is powerful and dominant, over-riding such other identities as gender (Burns, 2000). This is also a label that is likely to stay with the person for a lifetime (Harris, 1995), and that may be accompanied by awareness of the stigma connected to it (Rapley, Kiernan, & Antaki, 1998), although there is some evidence (e.g., Beart, Hardy, & Buchan, 2004) that self-views may be to some extent malleable in response to such activities as self-advocacy. Some writers have assumed that people with intellectual disability are unaware of the effects of their own labels, but interviews with these people have suggested otherwise (e.g., Lea, 1988).

Wolfensberger (2002), writing about what he called the “language wars” centered on the words used to describe those with intellectual disability, identified 10 principles for selection and use of language. These principles suggest that those using disabilities language should: respect longstanding meanings of words; use terms to communicate (and not for other purposes, such as political correctness); be clear (i.e., not euphemistic) when referring to devalued people; observe the rules (e.g., grammatical principles) of the language spoken; not unnecessarily or deliberately degrade people's images; not resort to “term-hopping,” abandoning old terms for new ones that may be no better; adopt new terms only if they are clearly an improvement; analyze new terms with an eye to the amount and relevance of the information they communicate; avoid coercive means to change language conventions; and recognize that language and communication are imperfect processes. Realistically, Wolfensberger (2002) concluded, no term is likely to meet his ten criteria; nevertheless, his plea was for clear, honest communication about people and their characteristics.

The use of language intended to be politically correct or euphemistic may actually harm individuals with disabilities Wolfensberger (2002) contended, because if descriptors do not accurately characterize a person, others may expect more or less of the individual, make poor decisions, or even become angry with those providing poor information, and generalize their negative emotions to the person with disabilities. Thus there is danger of exacerbating the already existing tendency to blame victims for their own circumstances (e.g., Finerman & Bennett, 1995), a phenomenon known as defensive attribution (Shaver, 1970). There is an element of defensive attribution, for example, in the phenomenon Wolfensberger (1975) termed “the retarded person as a menace”—resulting in a tendency to blame people with intellectual disability for social and genetic problems and in response to treat them with vindictiveness or persecution.

Despite modern efforts to escape the limitations of labeling, labels have made life difficult for many people with intellectual disability. They have attributed defective traits, often medical in nature, to individuals, creating limiting self-fulfilling prophecies (Dunn, 1969). But the effects of labels are evident not only in the lives of the individuals carrying the labels. They also affect others in the cultural context surrounding individuals with disabilities.

Effects on others

Contemporary authors have recognized the connection between conceptions of intellectual disability and public policy (Shogren & Turnbull, 2010). However, the idea that perceptions of people with disability can influence the actions of others is not new. For example, Édouard Séguin, the French-American physician known for his pioneering work in educational techniques, was generous in his attitudes toward “idiots,” but harsh in his views toward “imbeciles” (whom he saw as more capable; Trent, 1994).

Wolfensberger (1975) detailed the ways in which perceptions of individuals with disabilities served historically to determine institutional models of care. These perceptions (and their accompanying labels) included the retarded person as “sick,” “subhuman,” “menace,” “object of pity,” “burden of charity,” “holy innocent,” and “developing individual” (pp. 5–17).

The retarded person as sick

It is noteworthy that the organization that would later become the AAIDD was known, at its founding in 1876, as the Association of Medical Officers of American Institutions for Idiotic and Feeble-Minded Persons. The superintendents who gathered to establish the group were all physicians, and they had been denied membership in the Association of Medical Officers of American Institutions for the Insane—a group that limited itself to the superintendents of lunatic asylums (Trent, 1994). So from its beginning, the major professional organization concerning itself with intellectual disability was responding to intellectual disability as a disease or illness—labels that persisted well past the middle of the twentieth century (e.g., American Medical Association, 1965). As Wolfensberger (1975) noted, facilities responding to individuals as sick were marked by a medical ethos, as evidenced by the pervasive use of medical language (e.g., “hospital,” “infirmary,” “nursing care,” “patients,” “disease,” “diagnosis,” “patient charts”) and procedures (medical-style staff uniforms, hierarchical relations between types of staff, physicians as decision makers, medically related disciplines and treatments taking priority over non-medical approaches). As we will see later in the stories of affected individuals, one consequence of this approach in institutions was that there was little time or concern for residents' emotional and psychological well-being (e.g., Sienkiewicz-Mercer & Kaplan, 1989).

The retarded person as subhuman

Wolfensberger (1975) related an anecdote in which Martin Luther, apparently referring to a child with severe or profound mental retardation, considered the child a changeling (the offspring of some sort of legendary creature, left in place of a human child) and advocated the child's drowning. When this failed, Luther prayed for the child's death. Vail (1967) described the kinds of dehumanizing practices associated with the subhuman expectation. These included emphasis on indestructible environments (unbreakable glass, heavy-duty furnishings, shielded light fixtures, heavy locked doors, barred windows), environmental control (inaccessible control of water temperature, lights, room temperature), and efficient management of people (drug-based behavioral control, large dormitories, soil- and stain-proof floors and walls, mass showers). Individuals seen as subhuman were not, of course, expected to develop or learn sufficiently to become fully human.

The retarded person as menace

Humans have long tended to denigrate or fear the “other,” those people who are different in customs, appearance, language, or other salient characteristics. Sumner (1906) coined the term “ethnocentrism” to describe this practice, and noted that it involves not only elevating one's own group, but also seeing the other group as inferior and threatening. In institutional care for people with intellectual disability, such attitudes have resulted in segregated facilities and perceptions of individuals as violent, criminal, or otherwise socially menacing. The label of menace creates in others the perception of individuals with disabilities as an out-group. Further, Gelb (1995) argued that degeneracy—a perspective shaped by Christian religious views—was a contributing factor to the view of the “feeble-minded” as a public menace. According to Gelb, this view arose from two assumptions: first, that humans and animals were different creations, leading to the notion that “primitive” and “savage” people were less than human; and second, that sinful living produced degenerate people. Individuals with intellectual disability were, of course, considered degenerate, and therefore the kind of menace that Goddard (1912) described in The Kallikak Family (about which we will hear more in Chapter Three). In Chapter Two we will discuss in more detail the changes that produced the evolution of the “menace” perspective.

The retarded person as object of pity

Labeling a person as an object of pity may cause others to see the person as a child who never grows, is not accountable for his or her behavior, and who “suffers” from his condition (Wolfensberger, 1975). Other people may be prompted to behave in paternalistic ways that protect the person and make minimal demands. People may also create environments free of the risks of normal life, with a focus on trying to make the person happy.

The retarded person as burden of charity

This label appealed to people whose conscience dictated that individuals with disabilities should receive basic care and shelter, but little enrichment or stimulation. Individuals should be grateful to these people, who would expect (perhaps begrudgingly) to provide basic subsistence needs, with nothing that could be considered a luxury. This view of persons with disabilities comes naturally from the history of some institutions as outgrowths of earlier homes for orphans, paupers, and others (Bartlett, 1967).

The retarded person as holy innocent