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II. How did the Topic of Disability Become a Matter of Interest?
III. Sociology and the Study of Disability
A. Adjusting to Disability
B. Disability as Deviance
C. The Minority Group Model of Disability
IV. Disability Movements
V. Managing the Experience of Chronic Illness/Disability
A. Recent Perspectives in the Sociology of Disability
VI. Prospects for Future Development
Disability is a phenomenon that is socially defined, has pervasive social consequences for individuals, and has significant impact on societies (Barnartt 2005). The social reality of disability is characterized by “considerable variation in the experience of impairment by large numbers of people who nonetheless share common conditions of exclusion, marginalization, and disadvantage” (Williams 2001:141). At the same time, in spite of exclusion, marginalization, and disadvantage, the symbolic meaning inherent in disability may be expressed in a strong and positive sense of identity. Disability can also be viewed as a political privilege, in the sense of carrying permission to be exempt from the work-based system, military service, debt, and criminal liability (Stone 1984).
In the medical literature, disability is considered to be “a physical or mental impairment that substantially limits one or more of the major life activities” (Fried et al. 2004). In this context, disability is viewed as a medical entity. Diagnosis of disability is based on either (a) a self-reported difficulty or need for assistance in carrying out activities and/or performing usual roles or (b) performance-based tests of functioning. While impairment is a precondition for disability as a medical entity, disability does not necessarily have to result from a physical or mental impairment.
The demography and epidemiology of disability vary depending on how persons with disability are defined (Verbrugge 1990; LaPlante 1991, 1993; Ing and Tewey 1994; Kaye et al. 1996; La Plante and Carlson 1996). The Social Security Administration defines persons with disabilities as those who have a physical or mental condition that prevents them from engaging in paid employment. Other definitions of disability include having a defined condition assumed to be disabling (e.g., deafness); using assistive devices; self-identifying as a person with a disability; and being regarded by others as having a disability. Irving Zola (1993) insightfully argued that the conception, measurement, and counting of disability differ validly depending on the purpose for which this information is needed. In addition, disability is a status that may or may not be applicable at different times in an individual’s life. Zola maintained, therefore, that disability is best conceived as fluid and continuous rather than as fixed or dichotomous. The relevance of the latter point is assuming increasing importance in the context of population aging.
II. How did the Topic of Disability Become a Matter of Interest?
After World War II, social scientists working in social medicine, social policy, and rehabilitation began to focus on social aspects of chronic illness and disability relating to injury. Most of this work focused on the prevalence of disability but lacked agreement on definitions or approaches to measurement. Pressures for measurement clarification emerged from different sources, in turn representing different interests. An early British report, seeking to document the numbers of persons with impairments, showed that terms such as impairment, disability, and handicap were not clearly defined. The World Health Organization (WHO) undertook the task of developing a clear set of definitions, which culminated in publication of the International Classification of Impairments, Disabilities, and Handicaps (WHO 1980). In the interest of rationalizing allocation of Social Security benefits in the United States, Saad Nagi (1979) produced similar definitions as he attempted to reconcile contradictions between definitions of “medical impairment” and “ability to work.”
Although Nagi and colleagues contributed to the sociology of disability as early as 1965, there was little follow-up on their concepts until reports were issued in the 1990s by the Institute of Medicine (IOM) and the National Academy of Sciences (Pope and Tarlov 1991; Brandt and Pope 1997). Terminology originally specified by Nagi (1965) provided a basis for the IOM’s differentiation among pathology, impairment, functional limitation, a potentially disabling condition, and a disability. The IOM reports strongly endorsed use of a conceptualization of disability that incorporates environmental factors as primary contributors to the creation of disability and recommended shifting the focus from the individual and the impairment to the interaction between the impairment and the environment. Importantly, in this view, the cultural category of “disabled” is socially, rather than medically, constructed (Higgins 1992), in part by cultural definitions and in part by the demands and constraints of social and physical environments. This conceptualization challenges the medical model of disability, in which the focus is on an impairment- related limitation in need of remediation.
Social scientists’ collective contributions to a “sociomedical model of disabling illness” (Bury 1997:138) helped to stimulate new ways of looking at disability. For example, the work of Goffman (1963) on stigma influenced views of the nature of mental and physical illness and legitimacy of conceptual and research approaches. Economists focused on national issues associated with disability benefits and employment, many of which were sociological as well as economic in nature, for example, the structure and function of disability programs, costs associated with vocational rehabilitation (VR) and with particular types of disability such as mental retardation, analyses of public programs such as Social Security, and effects of disability on the labor supply. In 1956, enactment of Social Security Disability Insurance formalized a policy connection between medical prognosis and employment potential, establishing a guarantee of benefits for persons deemed at risk, that is, vulnerable, due to their health. The policy was aimed at reducing these persons’ economic risk, but the legislation effectively provided a context for discussion of rights among persons with disabilities. Politicians proposed the concepts of targeted help and individual self-reliance as alternatives to universal entitlement, reflecting concern about the ability of the welfare state to assume care for persons with disabilities— illustrating contrasting viewpoints that have framed a continuing debate about appropriate societal responses to the needs of disabled persons.
In the late 1960s and early 1970s, the combined impetus provided by the civil rights movement, an increasing number of persons with disabilities attending college, and skilled leadership among persons with disabilities contributed to the beginning of the independent living movement (Scotch 1989). This movement was premised on a sociopolitical model of disability, that is, disability arising from interaction of a person with a particular environment, as opposed to a medical model in which disability is linked with physical or mental impairment. In the sociopolitical model, disability is viewed as an outcome of person-environment interaction rather than as an individual trait. This view, in turn, implies that the disability equation can be modified by modifying a person’s ability through rehabilitation or environmental change. The social model of disability developed by British theorists essentially discounted individual functional limitations and focused instead on the effects of an “oppressive” environment and social structure.
In the United States, the independent living and disability rights movements contributed to the framing of the 1973 Rehabilitation Act.
Against the dominant biomedical model, it was argued that the differences between the impairments arising out of clinically different diseases or accidents were less important than what they shared in terms of their psychological, social, and economic consequences. In part, this was a recognition of the limited impact that much disease-based rehabilitation had on the lives of those people going through long periods of treatment. What was important . . . it was argued,was not so much the nuanced variation of the unfolding of disease in different cases but the broad impact of living with such symptoms on global areas of social life: work, education, family, sex, identity, self-esteem, etc. (Williams 2001:128)
Section 504 of the Rehabilitation Act of 1973 was the first major civil rights legislation for disabled persons, prohibiting discrimination by the federal government and private and governmental entities contracting with the federal government, such as educational institutions. In contrast to earlier legislation that had provided or extended benefits, Section 504 established full participation as a civil right. The legislation represented the convergence of two trends in public policy: (a) extending the nondiscrimination language of the 1964 Civil Rights Act to persons with disabilities and (b) broadening the scope of social programs benefiting disabled persons (Scotch 2001). The second of these objectives called for increased funding and led to two presidential vetoes of the bill, distracting attention from the first objective of the legislation—that is, preventing discrimination. One motivating factor for Section 504 was that persons served by the VR system frequently encountered difficulty entering the job market after completing their training, due to structural and attitudinal barriers. Therefore, without structural modification and protection from discrimination, VR funds were not accomplishing the goal of returning individuals to gainful employment. Section 504 provided a basis for passage, in 1990, of the more comprehensive Americans with Disabilities Act (ADA).
III. Sociology and the Study of Disability
Sociological research on chronic illness, impairment, and disability originated in an effort to understand the relationship between experiences of symptoms or impairment, the social situations within which people live, and the combined effect these have on people’s lives. Major themes that have been developed include adjusting to disability through socialization processes and assumption of a sick role, understanding disability as a form of deviance, the minority group model of disability, emergence of disability movements, and management of illness and disability in people’s everyday lives.
A. Adjusting to Disability
For much of the twentieth century, disability was primarily defined by a biomedical framework and understood as a property inherent in individuals who were “different from normal.” The medical model largely equated disability with dependency, implying individuals’ need for welfare and other forms of social insurance. Thus, much early sociological and social psychology research focused on individuals’ adjustment to a dependent status. Disability onset was viewed as requiring a redefinition of one’s situation and a reconstruction of roles and social interaction patterns (Albrecht 1976). Scholars focused on adjustment to, and coping with, impairment (Cohn 1961; Kelman, Miller, and Lowenthal 1964; Ludwig and Collette 1970; Safilios-Rothschild 1970; Ben-Sira 1981, 1983), morale and motivation in rehabilitation settings (Litman 1966; Starkey 1968; Brown and Rawlinson 1976), and the importance of social support from family and community (New et al. 1968; Tolsdorf 1976; Petersen 1979; Smith 1979, 1981).
In her exploration of the complexity of individuals’ interactions with the administrative system of welfare, Blaxter (1976) maintained that disability is best understood within the framework of a career, in which the final outcome is always in the future. Patients’ definitions of self and needs are continually being developed and negotiated, in turn shaping their help-seeking behavior. Blaxter, like Roth (1963) and Scheff (1965), observed that the way that individuals present themselves is shaped by the agencies with whom they interact, setting in motion a continuous process of adjustment. Julius Roth (1963) saw timetables developed by the medical profession as structuring the patient’s career in ways congruent with the agenda of the medical organization. Scheff (1965, 1966) proposed that organizations use stereotypes of the “proper client” as a device for handling uncertainty. The more marginal the clients, the less precise and valid the stereotypes will be. Safilios-Rothschild (1976) noted that there was striking similarity in attitudes toward the disabled and women, both of whom have an understood need to accept and adjust to a stereotyped role to receive approval.
How definitions of disability are socially created (Higgins 1992; Goode 1994) or sustained through interaction (Gerschick 1998), and through attitudes of others toward persons with disabilities (Yuker, Block, and Campbell 1960; Siller and Chipman 1964; Yuker, Block, and Younng 1966; Richardson and Royce 1968; Shears and Jensema 1969; Richardson 1970, 1971; Schroedel 1978; Altman 1981), has been a theme in the work of many sociologists. Comer and Piliavin (1972) proposed that the able-bodied display less variability in verbal output, less smiling behavior, less eye contact, and greater motor inhibition with the disabled. This, in turn, limits types of social interaction for disabled persons and provides them with fewer opportunities for trying out roles and behavior. Davis (1964) maintained that the more clearly defined and visible the disability, the greater the ease with which the disabled individual and the group adjust to each other. Ambiguity surrounding degree of impairment, conversely, has a negative impact on interpersonal relationships (Zahn 1973), resulting in confused expectations, goals that are unclear, and roles that are contradictory. Thus, according to Gove (1976), societies such as the United States, which have developed formal processes for dealing with the disabled, tend to be more tolerant of disability than those that have no such processes.
The opportunity for legitimate exemptions from usual role obligations, consistent with Parsons’s (1951) concept of the sick role, was regarded by some sociologists as almost synonymous with disability. For example, Gordon (1966) used the notion of an “impaired role” to describe the exclusion of disabled persons from social activities and responsibilities. David Mechanic (1959) focused on disability as an organic problem, stating that “blindness, paraplegia, deafness, or some other condition . . . renders [the] ability to occupy normal social roles either limited, doubtful, or impossible” (p. 38). Mechanic (1968) later acknowledged the critical role of the environment, however: “the operating principle of . . . rehabilitation attempts is to change the skills and environment of a person so that his condition results in the least possible disability and disruption of life patterns” (p. 410). Hahn (1994) notes that this recommendation could have placed medical sociology at the center of the emerging field of psychosocial rehabilitation. Mechanic’s focus on individual functioning and on the supposedly inherent effects of an impairment appeared to stem from the medical model of disability, although his later acknowledgment of the importance of the fit between individuals’ characteristics and the environments in which they functioned (Mechanic and Aiken 1991) illustrated a shift away from the implications of the sick-role concept.
B. Disability as Deviance
Theories of deviance also influenced sociological studies of disability, beginning with Goffman’s (1963) work on management of stigma. Davis (1964) examined the impact of stigma on interpersonal perceptions of disability, and Safilios-Rothschild (1970) concluded that the position of disabled persons could be best analyzed using a general theory of deviance. Freidson (1965) and Scott (1965, 1969) also considered disability within a deviance or “societal reaction theory” framework (Gove 1976).
The societal reaction theorist attaches little significance to primary deviance except insofar as others react to it. For example, according to Erikson (1964),
Deviance is not a property inherent in certain forms of behavior, it is the property conferred upon these forms by the audiences which directly or indirectly witness them. The critical variable in the study of deviance then is the social audience which eventually determines whether or not any episode of behavior or any class of episodes is labeled deviant. (P. 11)
Similarly, Becker (1963) argued that social groups create deviance by making rules where infractions constitute deviant behavior and by applying those rules to particular people and labeling them as outsiders, that is, “offenders.” Thus, individuals are processed by government and private agencies and found to be either disabled or not disabled. The disabled are often channeled into an institutional setting, where there is a disability subculture the person is expected to fit into. Scott (1965) described welfare agencies for the blind as engaged in a socialization process, “the purpose of which is to prepare a disabled person to play a type of deviant role” and “make blind persons out of people who cannot see” (p. 135).
The literature on disability as deviance argued that, like other stigmatized groups, disabled persons tend to be evaluated as a category rather than as individuals. Two predominantly negative stereotypes are likely to be applied: one stereotype of the particular impairment (blind, spastic, etc.) and one that is attached to the general label of “disabled” (Blaxter 1976). Freidson (1965) maintained that labeling, segregating, and feedback processes apply to the disabled as to other deviants; the disabled person is so defined because he deviates from what he himself or others consider normal and appropriate. Individuals may, therefore, develop a wide variety of concealing techniques to avoid the stigmatized label (see, e.g., Goffman 1963; Davis 1964; Hunt 1966).
Gove noted that both societal reaction theorists and rehabilitation theorists see disability behavior as largely a product of role relationships. Societal reaction theorists see the social system as creating and stabilizing deviant behavior, however, while rehabilitation theorists see the same processes as helping the disabled individual lead a “normal” life. This may be a labeling difference between the two to some extent, but the differences are also quite real to a large extent. Whether the processes are primarily beneficial or detrimental is an empirical question.
The greater the individual’s resources, the greater the likelihood of avoiding being channeled into the role of the impaired and disabled (Gove and Howell 1974). Similarly, Safilios-Rothschild (1976) noted that high social status is likely to be an overriding characteristic whose desirability can outweigh the undesirability of several other characteristics, including disability. Persons considered to have high social status are most likely to be able to retain their majority status rights and to become rehabilitated on their own terms.
C. The Minority Group Model of Disability
The passage of the Rehabilitation Act of 1973 contributed to a civil rights perspective and, in turn, to a minority perspective in which disability was seen as generated by a disabling environment (DeJong 1979; Gliedman and Roth 1980; Stroman 1982; Hahn 1982, 1983, 1985a; Christiansen and Barnartt 1987). Within the framework of the minority group model as discussed by Hahn (1982, 1984, 1985b), people are categorized as disabled because of stigmatizing or prejudicial attitudes about discernible bodily differences rather than because of their functional impairments. The minority group model of disability includes three important postulates:
- The source of major problems for persons with disabilities is social attitudes.
- Almost every facet of the environment has been shaped by public policy.
- In a democratic society, policies reflect pervasive attitudes and values (Hahn 1986).
Thus, both the sources and the solutions for problems of disability are external, and attitudinal discrimination is identified as the major barrier for disabled persons. The minority group model of disability can include alternative theoretical perspectives, for example, a labeling-interactionist perspective, as discussed by Conrad and Schneider (1992), can help investigate social meanings of disability in the context of historical changes in deviance designations.
Hahn (1985a, 1993a, 1993b, 1994, 2000) argued that disabled persons lack a sense of “generational continuity” that might enable them to transmit information regarding means of combating prejudice from one cohort of disabled people to the next. Thus, disabled persons can be termed a “unigenerational minority,” reacting to perceived social oppression at a particular period. Hahn (1994) also noted that conceptual frameworks applied to the study of disability may embody quite different policy implications. For example, a sick-role perspective, in which the interpretation of disability entails exemptions from usual social obligations, is likely to be associated with analysis of welfare. The minority group model, on the other hand, calls attention to the investigation of antidiscrimination legislation and social movements.
According to Gill (2001), there are important differences between disabled persons and other minorities, however. One difference noted by Gill is that negative ascriptions based on disability can be linked, at least superficially, to “real” human differences. Another important difference, she argued, is that unlike members of race and ethnic groups, most disabled persons identify as typical, unless they have developed a political or cultural consciousness that centralizes difference.
IV. Disability Movements
In the 1970s, deaf persons protested outside telephone companies around the country because of anger at having to pay for special equipment and spend more to make long-distance telephone calls. This demonstration was interpreted as an emotional response to the shattered hope that years of volunteer effort to achieve telecommunications access would be successful. Exclusion, illustrated by the exclusion experienced by deaf persons from telephone access, came to play a positive role in the evolution of a “disability community,” serving as a catalyst for a sense of shared identity and identifying a target for collective action (Scotch 2001). In a similar way, black power, feminist, and other social movements of the 1960s stressed a positive self-image rooted in the collective identity of an excluded group demanding greater participation.
Scotch (2001) argues that a number of factors helped to nurture a social movement of disabled persons:
- Medical technologies, including prosthetics, medications, and surgical techniques, enabled longer life, survival of injuries, and fuller participation in everyday life activities.
- The popularization of an ideology of deinstitutionalization and normalization, especially in the mental health field, encouraged the growth of noninstitutional support systems and greater participation in community life.
- With the changing age structure of the larger society, an increasing number of elderly persons had physical disabilities and shared service needs.
- The Vietnam War produced a large number of disabled veterans who were activists, and the war itself generated widespread protests that helped to legitimate social activism.
It is also important that during the 1960s and early 1970s a number of major programs were enacted that promoted more complete participation by persons with disabilities: the Architectural Barriers Act of 1968, expanded funding for vocational and independent living services under the VR program beginning in 1968, the Developmental Disabilities Services and Facilities Construction Act of 1970, the Education for All Handicapped Children Act in 1974, and Project Head Start in 1974. These programs represented a logical extension of a pattern of expanding entitlements and services provided by the federal government based on broadly held social and political values, a pattern referred to by Daniel Bell as a “revolution of rising entitlements” (Scotch 2001). This pattern, more than vocal advocacy by disabled persons, is thought to have fostered the adoption of Section 504 of the 1973 Rehabilitation Act. Consumer groups did, however, subsequently protest the delayed implementation of Section 504 at offices of the Department of Health, Education, and Welfare, which contributed to disability groups becoming empowered to participate more actively in the political arena.
The problems faced by persons with different types of impairments, and the proposed solutions for these problems, may be quite different, making the development of a shared consciousness problematic (Scotch 1989). Barnartt and Scotch (2002) studied “contentious political actions” within disabled communities from 1970 to 1999. They concluded that demands for desired changes and actions were most often impairment specific. “Cross-disability” protests, involving demands that potentially apply to people with all types of impairments, were found to occur only 28 percent of the time. This analysis by Barnartt and Scotch suggested that, because persons with different impairments may not have a shared collective consciousness, concerted advocacy by large numbers of persons with disabilities is likely to be infrequent.
V. Managing the Experience of Chronic Illness/Disability
Analyses that attempt to understand how people manage illness in their everyday lives represent an effort to illuminate an “insider’s” perspective: What is the subjective experience of illness? The experience of disability is one focus within the subjective experience of illness as discussed by Conrad (1987). Interestingly, Conrad attributes an emerging interest in the illness experience in part to the disability movement that had its origins in the 1970s: “These self-help and advocacy groups took experiential data seriously, since they were in a sense ‘experts’ in it, and fostered a new social awareness of the problems of living with disability” (pp. 3–4).
A sociology of illness experience is concerned with how people live with and in spite of illness. It is based on systematically collected and analyzed data from a number and variety of persons with a particular illness, as in Schneider and Conrad’s (1983) study of living with epilepsy and O’Brien’s (1983) study of living with chronic hemodialysis. The focus is on the meaning of illness to the individual, the social organization of the individual’s world, and the strategies the individual uses in adaptation.
This perspective is qualitatively different from the notion of adjusting to a disability status defined by others (an “outsider’s” rather than an “insider’s” view). It recognizes that individuals creatively manage their illness in their everyday lives, defining and redefining who they are and how they relate to others. Corbin and Strauss (1985) argued that illness experience can be valuably conceptualized in terms of work that must be accomplished. Because work is a concept central to the lives of individuals who do not have chronic illness, this conceptualization indicates shared experience for people who are ill and people who are well—a different interpretation from the sick-role conceptualization. Conrad (1987) cautions against overconceptualizing the illness experience as types of work, however, maintaining that managing various aspects of illness has other meanings as well.
The concept of career, used by Blaxter (1976) in her study of disabled individuals’ interactions with social agencies, is relevant to understanding the illness experience. Conrad notes that the concept of illness trajectory (Corbin and Strauss 1985) may be even more appropriate to studies in the experience of illness because it encompasses process and change and does not assume linearity or orderliness in illness progression. Other focal concerns from research on the experience of illness include the need to manage uncertainty and stigma (see, e.g., Schneider and Conrad 1983) and the need for biographical work and reconstitution of self (see, e.g., Corbin and Strauss 1985; Charmaz 1987).
A. Recent Perspectives in the Sociology of Disability
The growth of the disability rights movement and political efforts to achieve social rights in the 1970s and 1980s were important elements in an emergent change in the conceptualization of disability. The disability rights movement had the goal of changing both the self-concepts and societal conceptions of participants (Anspach 1979). After the emergence of the disability rights movement, disabled persons were seen as shaping negotiated outcomes (“nothing about us without us”) rather than passively adapting to labels imposed on them (Hanks and Poplin 1981). After passage of the ADA in 1990, disability was increasingly viewed as a diversity, inclusion, and civil rights issue.
For persons with physical impairments and chronic illness, however, negotiated outcomes in medical care are often challenging, despite increased popularizing of self-help and self-care strategies in the context of a “consumer movement” in health care. To a large degree, the curative model of medical care continues to be the dominant model in the United States, a situation that has been labeled a “residual problem” in our system of health care (Fox 1997). Health promotion and rehabilitation models can make important contributions to outcomes for persons with chronic or disabling conditions. Better-informed patients are more likely to become involved in health-promotion behaviors, and the more individuals are willing to actively pursue strategies to improve their health status and manage their own rehabilitation, the better their health outcomes are likely to be. Combining different models of care in actual practice is challenging, however, because each model has its own inherent assumptions, attitudes, and values— that is, the different models represent different paradigms. An important difference between the cure paradigm and health promotion or rehabilitation paradigms in medical care is that these paradigms are centered on different responsible agents. The physician is the agent credited with achieving cure, but the patient-actor must be ultimately responsible for health promotion and rehabilitation achievements. Clinicians, understandably, want to preserve their role as the owners of expert knowledge about cure-focused, or at least symptom-managing, treatment. Clinician monopoly over expert treatment knowledge is challenged by a patient-actor who defines and pursues health promotion and rehabilitation goals as an active partner in the care system (Kutner 2003).
In a sample of disabled activists, Hahn and Belt (2004) found that self-identity related to a personal affirmation of disability was a significant predictor of refusing medical treatment for disabling conditions. Age of onset of the individual’s disability was also a predictor. Persons with earlier age of disability onset were more likely to reject curative treatment. Hahn and Belt suggested two potential explanations for the latter finding. First, early disability onset is likely to lead to a stronger personal sense of disability identity. Second, early disability onset gives longer exposure to medical interventions that often prove disappointing because they do not provide cure. In addition to affirmation of disability identity, communal attachments were strong values among the activists who were studied.
A recurring theme in the literature on disability, evident in discussions of isolation, invisibility, and struggle (see, e.g., Zola 1982), is disabled individuals’ desire for connection with others. A central feature of the disability “insider” experience is described as a persistent and disquieting sense of mistaken identity. Tension between the desire to be viewed as “typical” versus the desire to be able to be comfortable affirming one’s personal disability identity (this is who I am) is at the heart of the social experience of disability discussed by Carol Gill (2001). The identity that the individual struggles to present to the world is commonly dismissed, with stereotypical identity ascriptions substituted for this identity. In one individual’s words, “my disability is how people respond to my disability” (Craig Vick, cited in Gill 2001:352). Thus, disabled persons must critique and continually expand the concept of “normality” and work to bridge the gap between their self-views and public perceptions and between their inner and outer worlds. Bogdan and Taylor (1987, 1989), however, argue that severely disabled people can have moral careers that promote inclusion rather than exclusion and that a sociology of acceptance, rather than rejection, merits study.
The development of disability movements facilitated disabled persons’ acceptance of self, their “pride,” and a focus on positive identity (Hahn and Belt 2004). At the same time, disability identity conflicts with economic and cultural imperatives of a highly normalizing society that pursues the goal of “bodily uniformity” as measured by criteria such as beauty, health, fitness, and intelligence. An ideology of “able-ism” has exclusionary social functions (Turner 2001), as privileged designations of the body are preserved and validated, providing cultural capital to those who can claim such status (Garland-Thomson 2004). Hahn (1994) argued that the dynamics of capitalism and “commodity fetishism” encourage people to emulate virtually unattainable physical ideals. The environment, therefore, remains a powerful influence as disabled persons strive for integrity in self and in social relations (Gill 2001).
The sociology of disability can benefit from focusing not only on the “politics of identity” but also on the “politics of structures,” according to Williams (2001). Developments in social security systems and the entire “disability business” in Western societies can significantly affect the societal meaning of disability (Stone 1984; Albrecht 1992). A minority group perspective on people with disabilities can have political uses, calling attention to inequities in services and opportunities. Zola (1991), however, explicitly rejected use of an “us and them” framework. He recognized that aging societies with growing numbers of persons with chronic illness had great significance for the development of the disability movement, creating shared challenges for the “able-bodied” and the “disabled” and the opportunity to effectively partner to achieve broadly applicable objectives such as available transportation systems and assisted living options.
Where high economic costs are involved, such as in mass transportation and long-term care, there may well be a decided disadvantage for the needs of people with disabilities to be thought of as “special” and “restrictive” rather than general, if not universal. (Zola 1993:30)
VI. Prospects for Future Development
Williams (2001) argues that the study of disability lacks a unifying theory or perspective and that conceptual issues are at the core of the sociology of disability. Because there are “seemingly infinite permutations of the experience of being physically different in a highly normalizing society” (p. 130), he maintains that much more study should be focused on the real effects of different impairments and how these translate into complex negotiated aspects of everyday life. Williams explicitly refers to being physically different, but presumably he would also include the experience of being mentally different as well.
There have been few efforts to analyze parallels and differences in the experience and negotiated outcomes of persons with different impairments. The degree to which a shared sense of community develops among persons with a particular condition is likely to vary markedly. Having a shared, distinctive language is a very important aspect of membership in the deaf community. Whether or not persons with a particular potentially disabling condition have social contact on a regular basis significantly influences the opportunity for forming peer relationships, as illustrated by the emergent “social world” of the renal dialysis clinic (O’Brien 1983; Kutner 1987).
As modern medicine prolongs life in persons with serious diseases and injuries, an increasing number of persons have a wide range of potentially disabling conditions. As public health knowledge becomes increasingly sophisticated, a condition such as obesity that is associated with reported physical limitations may be defined as a disability (Gilman 2004). Paradoxically, therefore, disability may be more prevalent in more highly developed societies than in less developed societies.
The worldwide phenomenon of population aging also has far-reaching implications for the continued development of the sociology of disability. With aging, every life virtually evolves into disability, making disability perhaps the essential characteristic of being human (Garland- Thomson 2004). Changes associated with the aging process thus represent another sense in which disability and “normality” form a continuum (Blaxter 1976). Because every individual will inevitably age and is likely to experience one or more physical challenges commonly considered chronic illness or disability, the acceptance of disability is the acceptance of an inevitable part of oneself. Recognizing population aging in Western societies, the growing prevalence of chronicity, and the globalization of health risks, Zola (1989) argued for a necessary universalizing of disability policy.
Barnartt (2005) has identified a number of additional opportunities for research that can enlarge sociological understanding of disability:
- Demands for inclusion and needs for planning the distribution of scarce resources generate questions about the appropriate conceptualization of disability and its subsequent measurement (Altman 2001).
- Examination of variation across cultures in the definition, treatment, and experience of disability could increase understanding of the processes by which social barriers arise.
- Physical and social environments are pivotal in understanding all aspects of disability, including the development of impairments and functional limitations as well as the emergence of disability from functional limitations.
- There has been little study of factors that affect access to rapidly advancing technology and assistive devices that can change people’s lives and, subsequently, the importance of these devices for individuals’ social roles, integration, and participation.
- Little is known about the impact of transitioning from a disabled to a nondisabled status, as opposed to the usual focus on transitioning from a nondisabled to a disabled status. What meaning does this have for the person’s roles, identity, and behavior?
- Positive aspects of family functioning with disability (care-receiving, family adaptation) have received little attention. An important dimension may be family members’ involvement in emergent communities that have a shared disability focus, for example, childhood disorders such as autism or rare medical conditions. Electronic communication may be a central means of community emergence and linkage, facilitating sharing of information and support.
- The ethical and legal issues that affect persons with disabilities, illustrated by decisions about end of life, genetic research, and transplantation, are a rich area for study, as discussed by Asch (2001). Hahn (1994) notes that efforts to prevent disability, for example, through genetic counseling, convey a message that impairments are so undesirable that no one would want to accept living with such a condition— a message that is in direct opposition to positive acceptance of disability as a defining feature of one’s identity.
- Social movements among persons with disabilities have been increasing in many parts of the world, potentially contributing to tension among disability subgroups in the population.
- The interrelation of disability and socioeconomic variables merits continued study, especially in the context of a life course perspective.
Although disability is a fundamental facet of human diversity, it has received much less critical analysis within sociology than have race, gender, ethnicity, sexual orientation, and social class. Irving Zola advocated for “bringing our bodies back in” to develop an adequate sociology of disability (Turner 2001). Zola, however, made it clear that he did not argue for a new, separate sociology of the body or for a separate paradigm. Rather, he maintained that what sociology has claimed for age, gender, race, and social class needs to be done for bodily experiences. Placing these experiences at the center of analysis is the first, important step (Zola 1991).
- Albrecht, Gary L. 1976. “Socialization and the Disability Process.” Pp. 3–38 in The Sociology of Physical Disability and Rehabilitation, edited by G. L. Albrecht. Pittsburgh, PA: University of Pittsburgh Press.
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