The recent World Report on Disability (World Health Organization and World Bank 2011) concluded that 15 %, more than a billion people, around the world experience some form of disability. Eighty percent of these live in developing countries. Wherever they live, people with disabilities generally have poorer health, lower educational attainment, fewer economic opportunities, and higher rates of poverty than people without disabilities. A very prominent but often invisible form of disability is intellectual disability, which affects around 2 % of the population. Intellectual disability, like disability in general, is more common in developing countries due to poorer health and maternity care, and increased risk of exposure to diseases, toxins, and severe malnutrition. Persons with intellectual disabilities experience the same sources of disadvantage and inequities as people with other types of disabilities, but often face the additional disadvantage of having their needs inadequately understood and met and having limited recourse to assert their rights.
Historically, the category of âintellectual disabilityâ as a discrete entity was created and defined through a medical model that used labels such as âfeeblemindedâ, âmental defectiveâ, âsubnormalâ, and âretardedâ. Such terms became generic insults, as well as insults specifically aimed at this population. The characterization of people with intellectual disabilities as less worthy, subhuman, found its most extreme advocates in the Eugenics movement, resulting in the forceful sterilization of tens of thousands of persons with intellectual disabilities and later under the Nazi regime experimentation on them and their extermination (Grenon and Merrick 2014; Wolfensberger 1981). While we may think such sentiments belong to some other âdarkâ era, of note the American Association on Intellectual and Developmental Disabilities, one of the worldâs foremost scientific organizations focused on intellectual disability, only abandoned use of the term âmental retardationâ as recently as 2006, having referred to itself until this time as the American Association on Mental Retardation. The word âretardâ and other highly pejorative terms are still commonly used in many parts of the world (Scior et al. 2015).
The very concept of intellectual disability presumes that it is possible to draw a clear demarcating line between intellectual ability and disability. This notion is rooted in Western classificatory systems but is of little relevance in many other parts of the world, not least as such a label would result in few if any additional resources being provided outside of the family. Having noted this qualification, in this book we have adopted the most prominent current definition of intellectual disability as (1) significant impairment of intellectual (cognitive) functioning, indicated by a full-scale IQ below 70; (2) alongside significant impairment of adaptive (social) functioning that affects how a person copes with everyday tasks; (3) both of which must have their onset during childhood (before age 18) (American Psychiatric Association 2013; World Health Organization 1994). Rather than concern ourselves with impairment (a problem in body function or structure), though, in this book we very much focus on intellectual disability (the interaction between features of a personâs body and features of the society in which they live), as it is at the point of interaction between individual and society that the oppressive consequences of disability stigma are experienced. Importantly though, as several of the authors in Part II of this book note, a frequent failure to recognize impairment and make adjustments to accommodate the needs of persons with intellectual disabilities is in itself disabling and closely related to stigma.
What Is Intellectual Disability Stigma?
Intellectual disability elicits mixed reactions. While many respond to visible disability with compassion, sympathy, and a desire to help, intellectual disability also elicits many negative responses including pity, anxiety, avoidance, hostility, and even hatred and disgust. Such negative responses arise from stigma, a term that originates in ancient Greek and was reintroduced into common parlance by Goffman (1963), who defined stigma as the process by which the reaction of others spoils normal identity. A prominent current conceptualization defines stigma as the co-occurrence of labeling, stereotyping (negative evaluation of a label), and prejudice (endorsement of negative stereotypes), which lead to status loss and discrimination for the stigmatized individual or group (Link and Phelan 2001). Widely endorsed negative stereotypes about people with intellectual disabilities are that they are invariably severely academically and socially impaired (McCaughey and Strohmer 2005), lack the potential to change (Jahoda and Markova 2004), and are childlike (Gilmore et al. 2003).
Importantly, for stigmatization to occur, power must be exercised; that is, members of the stigmatized group are disempowered by having their access to rights, resources, and opportunities determined by those invested with more power in the social hierarchyâa condition that is clearly met for this population. The attention paid to power in social processes that continue the subjugation of people with intellectual disabilities is one of the key reasons why we have adopted the term âstigmaâ, in preference over the term âattitudeâ, which dominates research and discussion in the intellectual disability field. Furthermore, contemporary psychological theorizing on attitudes draws attention to three aspects of attitudes: a cognitive component (how we think about X), an emotional component (how we feel about X), and a behavioral component (how we act toward X). However, in common parlance the term âattitudeâ continues to be mostly used to refer to the cognitive component alone and less so to emotions and actions or behaviors, which after all are most likely to negatively affect people with intellectual disabilities. In contrast, stigma more clearly draws our attention to negative outcomes such as devaluation and discrimination.
Why Is Intellectual Disability Stigmatized?
While in many parts of the world attitudes to people with intellectual disabilities have undoubtedly improved over time, evidence suggests that their position near the bottom of the social hierarchy remains largely unchanged. Studies consistently find that the general public rate social interactions with people with intellectual disabilities as much less desirable than contact with people with physical or sensory disabilities (but contact with individuals with severe mental health problems is viewed as at least equally undesirable). To answer the question why intellectual disability is stigmatized we need to look to social psychology. Although generally thought of in negative terms, social psychologists stress that stigma meets some important human needs. It allows people to reduce potentially overwhelming complexity and to feel better about themselves or their groupsâfunctions that have evolved from a need for humans to live in effective groups to assure their survival (Major and OâBrien 2005; Neuberg et al. 2000). As a flipside, it also allows them to justify their preferential status in society. Stigma has been theorized both as a social construction, as in the labeling theories referred to above, and in evolutionary terms. The fact that intellectual disability appears to be stigmatized across cultures yet stereotype contents and the extent of discrimination associated with intellectual disability vary across historical, social, and cultural contexts suggests that both types of theories should be borne in mind to advance our understanding of intellectual disability stigma.
Evolutionary theorists have proposed that disability has been stigmatized as it prevents individuals from contributing (equally) to the groupâs effective functioning, efforts, and resources (Neuberg et al. 2000). As societies evolve and the most valued tasks shift from physical to cognitive, people with physical disabilities are able to contribute in alternative, valued ways; consequently, physical disability becomes less stigmatized. However, as long as i...