Intellectual Disability

Ethics, Dehumanization, and a New Moral Community

Heather Keith, Kenneth D. Keith

• Publisher: Wiley-Blackwell
• Year: 2013
• Print ISBN: 9780470674321
• eBook ISBN: 9781118586440
• Edition: 1
• Topic: Éducation
• Subtopic: Difficultés d'apprentissage

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

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 i...

Table of contents

• Cover
• Dedication
• Title Page
• Copyright
• Acknowledgements
• Prologue
• Part I: The Roots of Dehumanization
• Part II: Out of the Darkness
• Part III: Disability Ethics for a New Age
• References
• Name Index
• Subject Index