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Towards a Critical Theory of Disability in Social Work

By

Vanmala Hiranandani, Ph.D, M.Phil., MSW
Assistant Professor
University of Northern Iowa
Department of Social Work
Cedar Falls, Iowa

 

 

Abstract

The dominant discourse on disability in social work has been that of an individual/medical model, which largely relegates the ‘problem’ of disability to a deficit within the individual. This paper calls for re-visioning disability: notions of disability in social work are contrasted with alternative frameworks, such as social and cultural constructions, materialist and political economy perspectives, and critiques of disciplinary power and the discourses of normalcy and measurement. These alternative conceptualizations drawn from humanities, social sciences, and disability studies can form the foundation of a dynamic critical theory of disability that questions impairment as necessarily a personal tragedy, and asserts that the notion of individual inadequacy is socially reproduced.

Introduction


Throughout history, individuals with disabilities have struggled to live full and productive lives as independently as possible in a society laden with stigma, discrimination, and attitudinal and environmental barriers. Most legislation, policies and practices have regarded persons with disabilities as unfit for society, as sick, as functionally limited, and as unable to work (Brooks, 1991; Brzuzy, 1997; Hahn, 1983; Mackelprang & Salsgiver, 1996; Quinn, 1995a). In recent years, the notion of disability as an individual problem has been contested as being inadequate and fallacious conceptualization of the lived experiences of people with disabilities (Asch & Fine, 1988; Barton, 1988; Davis, 1997a; Fleischer & Zames, 2001; Oliver, 1983; Pfeiffer, 1992, 1998; Priestley, 1999; Sapey & Hewitt, 1991). The growth of self-organization of people with disabilities since the 1970s has led to a re-definition of disability as a social construct: social, cultural, political, and environmental barriers have been emphasized as more disabling than physical or cognitive disabilities (ex. Oliver, 1996; Priestley, 1999). In keeping with social work’s mission of social justice, empowerment, self-determination, and commitment to marginalized populations, a critical social theory of disability is needed to question the monolithic view of disability as individual inadequacy. Emerging disability scholarship in humanities, social sciences, and the growing field of disability studies has put forth alternative frameworks that view the construction of disability from a critical lens. These developments challenge traditional perspectives of disability in social work, and call the profession to examine alternative analyses of disability.

Social work and the meaning of disability


The dominant view of disability in social work and social services has been the medical model, which views disability as a functional limitation, as individual ‘problem’, ‘pathology’, ‘dysfunction’, or ‘deviance’ (Brzuzy, 1997; Finkelstein, 1991). Oliver (1996) emphasized that the individual/medical model locates the “problem” of disability within the individual and considers functional limitations or psychological losses to arise naturally from the individual deficit. This view is also called the personal tragedy theory of disability, which posits that disability is a natural disadvantage suffered by disabled individuals when placed in competitive social situations. Instead of viewing disability as inextricably linked to social, cultural and political milieu, the medical or personal tragedy framework infers that the disabled individual is plagued by deficits and is in need of medical fixing (Quinn, 1995b).

Social work also addresses the issue of grief, loss and bereavement associated with mental and physical disability. Disabled individuals are commonly depicted as suffering subjects, characterized by the devastating changes and crises for both themselves and their families. Recognizing, accepting and coming to terms with the disability are viewed as the targeted outcomes of social work intervention (e.g. Hartman, Macintosh, & Engelhardt, 1983; Krausz, 1988; Parry, 1980).


Social work has also addressed disability from an ecological or psychosocial perspective. For example, Mackelprang and Hepworth (1987) suggested the importance of extending the medical perspective of disability to social factors such as stigma, architecture, and awareness of a social structure constructed by the able-bodied. Under this framework, the extent of disability is reciprocally determined by transactions between people and their environments rather than within the individual alone. Social workers have, indeed, articulated the importance of inclusion and accommodation for individuals with disabilities; however, they have largely stayed away from active involvement in the disability rights movement that has been initiated by people with disabilities and their advocates.

In recent decades, social work has moved towards empowerment, strengths, and resilience perspectives (Burack-Weiss, 1991; Saleebey, 1997). Drawing on the work of Solomon (1976), social work adopted the empowerment framework which concerns itself with the increase in the social, economic, and political influence of oppressed groups in relation to privileged sections of society (Hahn, 2005). In recent decades, the empowerment perspective has encouraged social workers to develop collaborations with oppressed groups such as persons of color and persons living in poverty (May, 2005); however, empowerment theory has had little impact on practice with people with disabilities who are more affected by the mainstream medical model than other vulnerable populations (Felske, 1994; Linton, 1998; Morris, 1991; Moxley, 1992; Zola, 1989). Empowerment has tended to revolve around temporary interventions that are assumed to produce lasting effects; however studies (ex. Gillam, 1998; Hiranandani, 1999) suggest empowerment of disadvantaged groups may be relatively temporary in a hegemonic socio-political milieu of skewed power relations.

The strengths perspective assumes that strengths, such as talents, capacities, knowledge, and resources exist in all individuals and communities. With regard to disability, strengths perspective takes the view that disability is an opportunity for growth as well as a source of impairment. As such, practice with people with disabilities attempts to take into account their abilities instead of disabilities in service planning, delivery, and assessment (Raske, 2005). The resiliency model upholds the inherent strengths in individuals and families who have overcome environmental, social, and personal barriers despite oppression and discrimination (Bernard, 1991). However, the resiliency perspective poses a danger, in that people with disabilities who “overcome” their disability are seen as “disabled heroes.” While disabled heroes can be inspiring to people with disabilities and comforting to the able-bodied, they may perpetuate the false notion that anyone can “overcome” the disability and accomplish unusual feats. As Wendell (1997) pointed out, most disabled heroes have exceptional social, economic, and physical resources that most people with disabilities do not have access to. The image of the resilient disabled hero creates an ideal which most disabled people cannot achieve, thereby increasing the “otherness” of the majority of people with disabilities.

Although empowerment, strengths, and resiliency perspectives have advanced the field of social work in the direction of its core mission, yet no social work perspective to date has the transformational power to change social and individual views about disability (Raske, 2005). Raske writes none of the above perspectives “have incorporated the notion that disability must be redefined to sever its socially constructed link with functional impairment and subsequently, with discrimination” (2005, p. 99). Citing Pfeiffer (2001), Raske points out if the social system is truly flexible and fully accommodates people with disabilities, disability would disappear.

Overall, despite the positive developments in social work, the profession has done little to promote disability rights; social work literature, research, and practice on disabilities have lagged behind other topical areas dealing with oppressed groups (Gilson, Bricout, & Baskind, 1998; Mackelprang, 1993; Mackelprang & Salsgiver, 1996; May, 2005). Notwithstanding the move towards ecological, empowerment, and strengths perspective in social work, the impact of the medical model of disability is evident in policy analysis research, which is synonymous with a lack of consultation with people having disabilities, the lack of emphasis on the social and political forces impacting the lives of people with disabilities, and a reduction of disability to simplistic “objective” criteria that measure functional limitations. To the extent, disability policies rely on disability-as-individual-problem framework, they marginalize the possibility of more enabling methods of human welfare that are based on participation, social integration, and equal citiz enship (Priestley, 1999).

Alternative perspectives on disability

In recent years, challenges to the traditional medical model of disability have emerged from various fields of study in humanities and social sciences, such as anthropology, political science, rhetoric, history, literary and cultural criticism, and disability studies (Barnes, Mercer, & Shakespeare, 1999). This section of the paper will highlight salient critical themes emanating from these arenas which have the potential to inform social work practice, pedagogy and research on disability. Key theoretical standpoints examined are the role of social and cultural factors in the development of the category of disability (ex. Ingstad & Reynolds-Whyte, 1995; Priestley, 1999; Stiker, 1982); the emergence of a social model of disability in United Kingdom (ex. Barnes, Mercer and Shakespeare, 1999; Oliver, 1996; Priestley, 1999); Marxist and political economy perspectives that discuss the relationship between disability and the emergence of industrial society (ex. Oliver, 1990, Stiker, 1982); the growing field of disability studies (ex. Linton, 1998); professional domination experienced by people with disabilities (ex. Foucault, 1973, 1977; Sapey & Hewitt, 1991); a critique of the discourse of normalcy (Amundson, 2000; Davis, 1997b) and the discourse of measurement (Cintron, 1997; Witkin, 2001); feminist theories (Garland-Thompson, 1997a; 1997b; Wendell, 1996; 1997); and disability arts and culture (Barnes, 2003; Oliver, 1996). It should be noted that the histories and experiences of people recognized to have different disabilities, such as various physical disabilities, developmental disabilities, and mental health problems, are not homogeneous. Nevertheless, once a human condition is labeled as “disabled”, many similarities emerge that comprise the overall experience of disability.

1. Social and cultural constructions of disability

In recent years, there has been a move towards the application of a social constructionist framework to disability (Borden, 1992; Brzuzy, 1997; Ringma & Brown, 1991). Witkin (1990) described constructionism as a theory that seeks to “elucidate the sociohistorical context and ongoing social dynamic of descriptions, explanations, and accountings of reality” (p. 38). Rather than taking theory and the dominant forms of understanding as definite conclusions, implicit in social constructionism is the idea that knowledge is not an objective entity, but rather a social creation (Levine, 1997). Constructionism devotes particular attention to the ways in which knowledge is historically situated and embedded in cultural values and assumptions, sociocultural norms, and language (Patterson, 1997). From the constructionist perspective, language serves as a method for producing meaning and generating knowledge rather than a representation of an objective “truth”. Constructionism as an epistemology, therefore, contributes a liberating quality to the social sciences by way of alteration to the monolithic landscape of positivism and scientific inquiry (Witkin, 1990).

Social constructionism can offer significant insight to contemporary conceptualizations of disability. Most individualistic (personal-tragedy) accounts of disability fail to recognize that even the most objective of disorders, such as visual impairment, do not exist independent of culture and society. The contemporary language of disability, with its individualistic representations of personal tragedy suggests that disability and impairment exist independent of cultural, historical, or other contexts (Brzuzy, 1997). While the emphasis on the influence of society and culture on human behavior has been widely accepted in several academic arenas (ex. anthropology, cultural criticism, sociology), social workers and other human service professionals seem to unquestioningly believe the objective “truth” of disability and impairment, thereby neglecting environmental factors (Raske, 2005). The constructionist perspective asserts that a disability-related impairment comes from the relationship of the person with a disability to the socio-cultural environment; thereby the environment is seen as the primary target of intervention. This framework stands in sharp contrast to the position taken by social work education regarding disability, where the emphasis is on rehabilitation, adaptation, and mitigation (Gilson & DePoy, 2002).

Drawing from cultural studies, the cultural construction of disability questions the enlightenment idea of a rational, progressive human actor in society. It scrutinizes extant knowledge to deconstruct the unstated assumptions about disability and people with disabilities. The subjective experience of disability and both the explicit and implicit assumptions that shape the disabled experience have been suggested by a large number of ethnographic studies undertaken by anthropologists (e.g. Groce & Scheer, 1990; Ingstad & Reynolds-Whyte, 1995; McDermott & Varenne, 1996). Social work in an increasingly multicultural North America poses the question of how disability is understood in different cultures. How are deficits of the body and mind interpreted and dealt with in different societies? How is an individual’s identity as a person affected by the cultural connotations of disability? How do processes of cultural transitions shape the local understanding of disability? Definitions of disability in terms of measurable functional limitations fail to recognize that culture permeates the variations of the human condition with consequences much deeper than the simple ability to perform a given task (Ingstad & Reynolds-Whyte, 1995). Objective criteria of functional limitations do not answer the question of how important is individual ability as a source of social identity in different cultures.

The experience of disability, too, varies across cultures. For example, Edgerton (1985) showed attitudes toward people with impairments varied greatly in non-Western cultures, from negative discrimination, to acceptance, and to positive attribution of supernatural powers. Locust (1985) explores the differences in Native American beliefs about “unwellness” across cultures such as the Hopi, Apache, Yagui, and Navajo. One telling case example is that of Piki Maker, an expert bread maker whose physical differences in back structure and arm length are promoted by her community as assets that allow her to produce bread at a more efficient rate than anyone else in the tribe.

Disability is, therefore, hardly a unitary concept: in many cultures one cannot be “disabled” because “disability” as a distinct category does not exist. The term “disabled” does not translate into many languages, although there are terms for people with visual, hearing and cognitive impairments (Ingstad & Reynolds-Whyte, 1995). The lack of a universal definition of disability throughout history indicates a tenuous relationship between the disabled individual and society.

Understanding disability as a socially and culturally constructed phenomenon, rather than as an inherent objective “reality” calls into question the presuppositions of the medical model that form the foundation of social work practice with people with disabilities. Most of the theoretical leanings that under gird social work assumptions and practice with disabled populations at the levels of treatment, counseling, rehabilitation, service provision, case management, research, and policy analysis have been borrowed from medicine and psychiatry; as such they often lack conformity between social work code of ethics and an agenda of human rights/social justice (Brzuzy, 1997). In this regard, constructionism provides a theoretical framework to rethink disability in liberating and empowering terms.

2. A social model of disability

The social model of disability was first put forth in the United Kingdom in a 1976 statement by the Union of the Physically Impaired Against Segregation (UPIAS, 1976). It was later discussed in detail by Corker (2000), Finkelstein (1980), and Oliver (1983, 1990, 1996). Instead of a narrow focus on functional limitations, the problem, according to the social model, is “society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organization” (Oliver, 1996, p. 32). Disability, according to the social model, encompasses all factors that impose restrictions on people with disabilities, ranging from negative social attitudes to institutional discrimination, from inaccessible public buildings to unusable transport systems, from segregated education to exclusion in work arrangements, and so on.

While it is acknowledged that the relationships of people with disabilities to their bodies involve elements of pain and struggle that perhaps cannot be eliminated or mitigated, yet many of the barriers that people with disabilities face are the consequences of having those physical impairments under existing social and economic arrangements, especially the means of industrial production. These social and economic systems could but do not accommodate disabled people’s physical conditions or integrate their struggles into the cultural concept of everyday life (Asch & Fine, 1988). The UK social model approach to understanding disability is a sociological one with a Marxist emphasis, wherein people with disabilities are viewed as “oppressed,” a standpoint which is not often found in the United States (Pfeiffer, 1996).

3. Marxist analysis of disability

Karl Marx believed any understanding of human societies must begin with the material conditions of human existence, or the economics of producing the necessities of life. The economic mode of production, due to its importance, influences other aspects of life, such as political organization, ideology, religion and culture: “the ideas of the ruling class are in every epoch the ruling ideas: that is, the class which is the ‘ruling material force’ of society, is at the same time its ruling intellectual force” (Marx & Engels, 1994, p. 15).

Marxist writers analyze disability as a social problem that is directly linked to the changing mode of production: definitions of disability and other social problems are influenced by both the economic and social structures and the core values of particular modes of production existing in a historical time period (Oliver, 1990; Priestley, 1999). For Oliver (1990), the individualized and pathologized approach to disability emerged due to the functional necessity of a workforce that is physically and intellectually able to meet the demands of industrialization. Oliver further posited


“historical materialism is not just about placing social relationships within a historical setting. It also attempts to provide an evolutionary perspective on the whole of human history, and of particular relevance here are the transitions from feudal through capitalist to socialist society” (1990, p. 26).

Oliver asserted feudal society did not exclude disabled people from participation in the process of production; even in cases where they could not fully participate, their contributions were still included and they were not segregated from the rest of society. The development of capitalism led to economic changes in the organization of labor, leading to profound implications for social relations, family life, and attitudes. While disability, of course, did not emerge with the rise of capitalism, it clearly took a different form of social relations: industrial capitalism excluded disabled people from equal participation in the labor force (Priestley, 1999).

4. The growth of welfare capitalism: A political economy perspective

World War I led to the development of rehabilitation efforts in Europe and United States. It is at this point that a broad paradigm shift occurred in dealing with disability, as Western societies attempted to cope with large numbers of those mutilated by war (Stiker, 1982). Disability, in modern times, raised technical problems to be dealt with by medical and legal specialists, social workers, and vocational trainers with the underlying concern to “integrate” disabled people into “ordinary” life and work. These circumstances led to the growth of institutional welfare arrangements to serve the new needs of disabled people.

Habermas (1987) argued that welfare capitalism leads to new forms of domination and subordination as the “life world” becomes increasingly “colonized” under the control of rationalized bureaucracies. The emergence of rehabilitation as a medical and paramedical specialization, beginning in the struggle for professional control over damaged bodies of the First World War led to the development of disability as a concern of the state (Gritzer and Arluke, 1985). Rehabilitation implied the general notions of replacement, substitution, and compensation, which over time were applied to all congenital and acquired impairments. The development of rehabilitation and intervention by the state has been accompanied by legislation, administrative procedures, welfare institutions, medical diagnoses, professional specializations, and business interests (Ingstad & Reynolds-Whyte, 1995). State assigned to medical professionals the task of determining who is entitled to the rights of financial support and services. The political issue of redistribution, that involves separating the deserving from the undeserving, thereby, became a clinical problem.

In an analysis of the history of disability in United States as an administrative classification, Stone (1984) examined the dispositions towards expanding the category. Flexibility in disability definitions and incorporation of new conditions (e.g. chronic fatigue syndrome, fibromyalgia) reflects various interests. Although cast in bio-medical terms, the determination of disability involves political decisions about the distribution of social goods. However, as Stone suggests, ongoing discourse in most disability research and policy is about ‘objective criteria’ and measurements of incapacity that leads to the perception that the state is distributing ‘scarce goods’ in a ‘fair’ and ‘systematic’ way.

With the expansion of federal legislation on disability, an aging population, an increase in chronic diseases, and the growth of the health insurance industry, disability has become big business (Albrecht, 1992; Finkelstein, 1991). Disability has been institutionalized and rehabilitation goods and services have become commodified in an ever-expanding market. As a result, people with disabilities have become consumers, who now have an identity and have formed groups as users of services.

In sum, it can be argued that “in late-capitalist countries disability exists and is produced by the state, legal, educational, economic and biomedical institutions. A person’s identity, notions of citizenship, value lost through impairment and added through rehabilitation are shaped by these institutions” (Ingstad & Reynolds-Whyte, 1995, p.10). The meaning of disability must therefore be understood as a construct related to prevailing economic organization, institutions, bureaucratic structures and political contexts in a particular historical period.

5. The growing field of disability studies

The social and political focus on disability has attracted increasing attention across a range of academic disciplines, resulting in an unprecedented growth of disability studies courses and journals in Canada and United States (Linton, 1998; Pfeiffer and Yoshida, 1995). This new humanities-oriented approach to disability draws from many fields and movements, including cultural studies, literary studies, area studies, feminist studies, race-and-ethnic study, art history, post-colonial studies, and so on. It is extensively informed by literary and cultural criticism insofar as it pulls apart concepts about disability to critically examine what cultural politics, antagonisms, and insecurities went into shaping them. Many writers have advanced the approach known as “body criticism”, the study of the ways in which cultures impose various meanings and conditions on the human body (Woodill, 1992). A hallmark of the field of disability studies is that it is both an academic field of inquiry as well as an arena of political struggle against social oppression (Davis, 1997a). Disability studies raises rich intellectual and political issues that are brought to our attention by experiences of disability.

Disability studies gained momentum as a result of the disability rights movement (Pfeiffer, 1993) and the political victory as a result of the passage of the Americans with Disabilities Act of 1990, which guarantees the civil rights of people with disabilities (Davis, 1997a). The achievements of social movements of people of color and the women’s rights movement as well as an emerging cadre of well-educated, assertive people with disabilities in the social environment of the 1960s provided a strong impetus for the emergence of the disability rights movement (for a detailed history of disability rights movement and civil rights legislation for people with disabilities, see Scotch, 1984 and Shapiro, 1993). This new social movement defies the assumptions of the biomedical model, which categorizes and divides people with disabilities on the basis of functional limitations.

The philosophy of disability studies and disability rights movement are, in fact, similar to social work principles: all three arenas work for equal rights, equal opportunities, social justice, self-respect, and self-determination. The problems for people with disabilities are seen as controlling attitudes on the part of professionals, inadequate support services, and attitudinal, architectural, and economic barriers. It is emphasized that solutions to these problems consist of self-advocacy, system advocacy, elimination of barriers, and outcomes chosen by the person with disability (Pfeiffer, 2005).

6. Disciplinary power and control

Foucault’s version of social constructionism gave fresh impetus to recent studies to examine the medicalization of social problems and the impact of professional power. Foucault (1977) emphasized the power of scientific knowledge, inherent in the medicalization of illness and impairment, creates a contrast between sovereign and disciplinary power. In modern societies there is not necessarily an easily identified, single authority, or oppressive sovereign power. Instead, liberal institutions such as education, health and welfare services, and the production and distribution of consumer goods are all instruments of domination (Foucault, 1980). Disciplinary power is about hierarchical observation, or the ways in which bodies are understood, monitored, and regulated. In tracing the history of “madness”, Foucault argues that the reasons underlying the development of a more humane medicine were less progressive than imagined (Foucault, 1973). While, psychiatry was viewed as a key part of the apparatus of regulation and control, new specializations, such as rehabilitation medicine and epidemiology, emerged and claimed chronic illness as their domain of authority. The significance of discourses in various disciplines such as medicine, psychiatry, social work, and rehabilitation is that it legitimizes the ability of professional elites to maintain relationships of power and gaze over disabled people in the production of welfare policies and services. These relationships of power and surveillance, that are inconsistent with social work principles of social justice, client empowerment, and self-determination, call for critical reflections on social work practice and pedagogy.

7. Discourses of normalcy and measurement

Under Foucault’s influence, medical concepts of disease and “madness” have been analyzed in terms of historically specific ways of viewing the body (Foucault, 1970, 1973, 1977). Foucault argued that the new scientific medicine, which took root in the eighteenth and early nineteenth centuries assumed a “normalizing gaze” of the human body, defining new boundaries between the “normal” and the “abnormal”. Medicine served a moral as well as a clinical function:

“it claimed to ensure the physical vigor and the moral cleanliness of the social body; it promised to eliminate defective individuals, degenerate and bastardized populations. In the name of biological and historical urgency, it justified the racism of the state…It grounded them in “truth”” (Foucault, 1977, p. 54).

Value-laden normalizing gaze of biological sciences became a device for the scaling and measuring of physical and mental capacities against standardized norms. A critical analysis of the discourse of normality and measurement, therefore, would serve to illuminate and expose power inequities.

Davis (1997b) pointed out that disability was viewed in a different way before eighteenth century. Disability, as we know it, entered public discourse with industrialization in the late eighteenth and nineteenth century. The words “normal,” normalcy,” normality,” “norm,” “average,” “abnormal” – all entered the English language over the period 1840-1860. In seeking an explanation for these changes in the conceptualization of disability, Davis logically turns our attention to statistics, the branch of knowledge that deals with the “norm” and “average”. The concept of a norm suggests that the majority of the population falls under the standard bell-shaped curve or the normal distribution. Any bell-shaped curve will also have outliers or extremities, whose characteristics deviate from the norm. So, the concept of the norm cannot exist without the concept of deviations. With regard to human bodies, a society that operates on the concept of the norm will view people with disabilities of as deviants (Davis, 1997b).

Solomos and Back (1996) explained during the late eighteenth century, the obsession with measurement and statistics generated a conception of hierarchies of physical, psychological and cultural differences: “people could be conveniently divided and classified not merely in terms of geographical origin or color but equally by virtue of cranial capacity and shape” (p. 34). More specifically, the measurement of bodies relative to biological norms became the primary mechanism through which social norms of acceptance were also defined. Garland-Thomson (1997a) demonstrated how there are hierarchies of embodiment which decide valued and devalued identities: “In this economy of visual difference, those bodies deemed inferior become spectacles of otherness while the unmarked are sheltered in the neutral space of normalcy” (p.8).

Cintron (1997) posited the discourse of measurement is concerned with the creation of precise orderings and emergence of an expert class that is skillful in applying these ordering schemes to individual and social life in order to better manage both spheres. Discourses of measurement, thus, are “practices but also ways of speaking and thinking that create order, coherence, and sets of rules to organize the otherwise random motions of daily life” (p. 211). Consequently, specific disciplines of knowledge and technologies have emerged that have the ability to monitor, control and, in certain cases, change the conditions of the bodily organ. This has led to the emergence of the ‘expert’ class that wields the power of that knowledge and technology.

Davis (1997b) also brought to our attention that almost all early statisticians, including Sir Francis Galton, Karl Pearson, and R. A. Fisher, were eugenicists, which points to the connection between measuring humans on several statistical dimensions and then improvising humans so that deviations from the norm get reduced:


“Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard – the aim of eugenics” (Davis, 1997b, p. 14).

Charles Darwin’s (cousin to Sir Francis Galton) notion of survival of the fittest and the idea of a body undergoing progressive improvement to reach perfection laid the foundation for eugenics. In Darwin’s theory, people with disabilities were seen as evolutionary defectives with undesirable characteristics that will be eliminated by the process of natural selection (Baynton, 1997). Consequences of this view have included withholding life-saving surgical interventions from disabled infants, sterilization and eugenic euthanasia in the United States and mass killings of “defective” individuals in Germany (the first to die in Nazi Germany were people with disabilities) (Baynton, 1997, p. 85). While it is true that eugenics is usually associated with Nazi-like supremacy, Davis (1997b) emphasized that it is important to realize that eugenics became the common practice of many European and American citizens: “we have largely forgotten that what Hitler did in developing a hideous policy of eugenics was just to implement the theories of the British and American eugenicists” (Davis, 1997b, p. 19).

Eugenics had a powerful influence well into the twentieth century. Since the rebellious 1960s, the concept of normality has been vigorously contested in most areas of popular culture. Yet, the idea of normality, as applied to people with disabilities, is still represented as binary oppositions, with one side upheld as a universal norm and the other side as a deviation from that norm (May, 2005); the norm being ambiguous, neither agreed upon nor clearly defined. As Amundson (2000) noted, the idea of “normal” is a fiction. According to him, the concepts of “normality” and “normal function” inherent in the medical model are neither objective nor their use scientific; they are simply the catchphrases of the dominant class of society which uses these concepts to preserve their power and position. The disadvantages experienced by people who are evaluated as “abnormal,” therefore, originate not from biology, but from unspoken societal judgments about the admissibility of certain kinds of biological variation (Amundson, 2000). Just as recent scholarship on race (e.g. Hartigan, 1999) suggests, instead of focusing on the person of color in the study of race, we must turn our attention to whiteness in order to understand how race works in specific contexts, contemporary disability theorists (e.g. Amundson, 2000; Davis, 1997b) assert, instead of focusing on disabled person as the object or subject of study, it is necessary to focus on the construction of normalcy in order to understand the ways in which the ubiquity, power, and value of the normative image resonate in our culture.

8. Feminist theories

Feminist theories emerged out of a need to understand how gender had marginalized women (Cummerton, 1986; Fraser & Gordon, 1994; Harding, 1997). Just as being biologically female is a disadvantage because of the socio-cultural context that makes it a disadvantage, from the perspective of a disabled person, disability is a disadvantage due to social, cultural, attitudinal, and environmental barriers. Femininity and disability are, in fact, inextricably linked. Both disability and gender are not biologically given; they are socially constructed from biological reality (Wendell, 1996). Both the female and the disabled body are cast within cultural discourse as deviant and inferior; both are excluded from full participation in public as well as economic life; both are defined in opposition to a valued norm of the male, white, upper class, able-bodied, which is assumed to possess natural corporeal superiority (Garland-Thomson, 1997b). These hierarchies of bodily value underwrite political, social, and economic arrangements.

In a society which idealizes physical and mental capacities, people with disabilities are marginalized. Wendell (1997) explained the disabled are not only devalued for their bodies that are different from the norm, they are also constant reminders to the able-bodied of the negative body – of what the able-bodied are trying to avoid, forget and ignore. Feminist theory has illuminated that the causes of our culture’s desire for the control over the body arise from the fear of losing control, fear of pain and dependence, and the fear of death. Western medicine perpetuates the cultural myth that the body can be controlled (Wendell, 1996, 1997; Zola, 1983). While the consequences of this cultural myth for women have been widely discussed in feminist literature, the consequences for people with disabilities have yet to be fully studied (Wendell, 1997). In a culture that places a high value on the “ideal” body and control over the body, those who cannot control their bodies are seen as the “other”.

A feminist analysis of disability is important because more than half of disabled people are women (Wendell, 1997; Asch & Fine, 1988) and because the feminist movement has questioned the most deep-seated issues about cultural representations of the body. Feminist theory offers an analytical framework that can take into account the personal and social realities of disability and elucidate how experiences of disability and the social oppression of people with disabilities interact with sexism, racism, nationalism, and class oppression. Such a theory can dislodge the persistent assumption that disability is a self-evident condition of bodily inadequacy and private tragedy whose politics concern only a limited minority – just as femaleness so easily seemed before feminism. A critical theory of disability can be liberating for both disabled and able-bodied people, since the theory of disability is also the theory of the oppression of the body by the society, political economy, and culture (Wendell, 1997).

9. Disability art and culture

Whereas images of disability, historically produced by non-disabled people, have been rooted in paternalism, prejudicial stereotypes, a charitable ethos, and assumptions of the dependency of disabled people, disability arts and culture contest the dominant meanings of disability in contemporary society and produce new images and art works that reflect the experiences and voices of people with disabilities (Oliver, 1996; Barnes et al, 1999). Disability art is a forum for critiquing dominant forms of cultural representation: it fosters pride in one’s disabilities, creates positive self-images, and envisions a society, which not only accepts, but also celebrates, diversity. Disdainful of pity, disability arts and culture – a major focus of disability studies – celebrates bodily differences and a sense of community, using the various forms of expression common to other cultures, such as film, poetry, literature, dance, sculpture, theatre, and painting.

Disability arts must not be confused with art therapy which is based on paternalism. People with disabilities have often been given art as therapy in the context of special schools, day centers, and segregated institutions. Barnes (2003) argued that such activities have not only individualized and depoliticized creativity; art therapy has been used for commercial purposes, such as charity Christmas cards. While there is a place for art therapy, disability art is about individual and collective empowerment and pride: it redefines disability as a positive source of identity. It exposes disabling imagery and social processes and develops cultural and political identity. Morrison and Finkelstein (1992) aptly stated:


“Arts practice should also be viewed … as a tool for change… To encourage the growth of a disability culture is no less than to begin the radical task of transforming ourselves from passive and dependent beings into active and creative agents for social change” (p. 11-12).

Thus, disability art has the potential to be educative, transformative, expressive, participative, and liberating (Barnes, 2003). Although disability arts are still young, they are a way to celebrate the resistance and strength, which the collective movements of disabled people have demonstrated in the last few decades.

Conclusion

Alternative frameworks drawn from humanities, social sciences, and disability studies can form the foundations of a dynamic critical theory of disability that questions the entrenched notion of disability as an inherent personal tragedy, and reveals how the category of disability is socially reproduced. This paper calls for re-thinking disability: specifically social work should endeavor to challenge existing notions of disability, to re-narrate disability, and to re-vision it as a part of human experience and history. Further, social work needs to contest existing “expert” discourses on disability by actively collaborating with people with disabilities and their advocates. To this end, social work and people with disabilities that it serves can benefit immensely by developing interdisciplinary collaborations with humanities, social sciences, and disability studies in which the new disability scholarship is more vigorous.


References

Albrecht, G. (1992). The disability business: Rehabilitation in America. London: Sage.

Amundson, R. (2000). Biological normality and the ADA. In L. P. Francis, & A. Silvers (Eds.), American with disabilities: Exploring implications of the law for individuals and institutions (pp. 102-110). New York: Routledge.

Asch, A., & Fine, M. (1988). Shared dreams: A left perspective on disability rights and reproductive rights. In M. Fine & A. Asch (Eds.), Women with disabilities: Essays in psychology, culture and politics (pp. 297-305). Philadelphia: Temple University Press.

Barnes, C. (2003). Effecting change: Disability culture and art? Paper presented at the Finding the Spotlight Conference, Liverpool Institute for the Performing Arts, May 28-31, 2003. Retrieved November 25, 2004, from http://leeds.ac.uk/disability-studies/archiveuk/Barnes/Effecting%20Chang...

Barnes, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability: A sociological introduction. Malden, MA: Blackwell.

Barton, L. (Ed.) (1988). The politics of special needs. Brighton: Falmer Press.

Baynton, D. C. (1997). Disability: A useful category of historical analysis. Disability Studies Quarterly, 17(2), 83-86.

Bernard, B. (1991). Fostering resiliency in kids: Protective factors in the family, school, and community. San Francisco: Western Regional Center.

Borden, W. (1992). Narrative perspectives in psychosocial intervention following adverse life conditions. Social Work, 37(2), 135-141.

Brooks, N. (1991). Self-empowerment among adults with severe physical disability: A case study. Journal of Sociology and Social Welfare, 18(1), 105-120.

Brzuzy, S. (1997). Deconstructing disability: The impact of definition. Journal of Poverty, 1(1), 81-91.

Burack-Weiss, A. (1991). In their own words: Elders’ reactions to vision loss. Journal of Gerontological Social Work, 17(3/4), 15-23.

Cintron, R. (1997). Angels’ town: Chero ways, gang life, and rhetorics of the everyday. Boston: Beacon Press.

Corker, M. (2000) The U.K. Disability Discrimination Act: Disabling language, justifying inequitable social participation. In L. P. Francis, & Silvers, A. (Eds.), Americans with disabilities: Exploring implications of the law for individuals and institutions (pp. 357-370). New York: Routledge.

Cummerton, J. M. (1986). A feminist perspective on research: What does it help us see? In N. Van Den Bergh & L. B. Cooper (Eds.), Feminist visions for social work . Silver Spring, MD: National Association of Social Workers.

Davis, L. J. (1997a). Introduction. In L. J. Davis (Ed.), The disability studies reader (pp. 1-8). New York: Routledge.

Davis, L. J. (1997b). Constructing normalcy: The bell curve, the novel, and the invention of the disabled body in the nineteenth century. In L. J. Davis (Ed.), The disability studies reader (pp. 9-28). New York: Routledge.

Edgerton, R. B. (1985). Rules, exceptions, and social order. Berkeley: University of California Press.

Felske, A. W. (1994). Knowing about knowing: Margin notes on disability research. In M. H. Rioux & M. Bach (Eds.), Disability is not measles (pp. 181-194). North York, Ontario: L’Institut Roeher.

Finkelstein, V. (1980). Attitudes and disabled people. New York: World Rehabilitation Fund.

Finkelstein, V. (1991). Disability: An administrative challenge? In M. Oliver (Ed.), Social work: Disabled people and disabling environments. London: Jessica Kingsley.

Fleischer, D. Z., & Zames, F. (2001). The disability rights movement: From charity to confrontation. Philadelphia: Temple University Press.

Foucault, M. (1970). The order of things. New York: Random House.

Foucault, M. (1973). Madness and civilization: The history of insanity in the age of reason. (R. Howard, Trans.). New York: Vintage Books.

Foucault, M. (1977). Discipline and punish . New York: Vintage Books.

Foucault, M. (1980). In Colin Gordon (Ed.), Power/knowledge: Selected interviews and other writings 1972-1977 . Brighton: Harvester Press.

Fraser, N. & Gordon, L. (1994). A genealogy of dependency: Tracing a keyword of the U.S. welfare state. Signs: Journal of Women in Culture and Society, 19(2), 309-336.

Garland-Thomson, R. (1997a). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.

Garland-Thomson, R. (1997b). Feminist theory, the body, and the disabled figure. In L. J. Davis (Ed.), The disability studies reader (pp. 279-292). New York: Routledge.

Gillam, K. L. (1998). Is there an empowerment life cycle? Urban Affairs Review, 33, 741-766.

Gilson, S. F., & DePoy, E. (2002). Theoretical approaches to disability content in social work education. Journal of Social Work Education, 38(1).

Gilson, S. F., Bricout, J. C., & Baskind, F. R. (1998). Listening to the voices of individuals with disabilities. The Journal of Contemporary Human Services, 79(2), 188-196.

Gritzer, G., & Arluke, A. (1985). The making of rehabilitation: A political economy of medical specialization, 1890-1980. Berkeley: University of California Press.

Groce, N., & Scheer, J. (1990). Introduction. Social Science and Medicine, 30(8), v-vi.

Habermas, J. (1987). The theory of communicative competence: Vol. 2. Life world and system . Boston: Beacon.

Hahn, H. (1983). Paternalism and public policy. Society, 20, 36-46.

Hahn, H. (2005). Academic debates and political advocacy: The U.S. disability movement. In G. E. May & M. B. Raske (Eds.), Ending disability discrimination: Strategies for social workers (pp. 1-24). Boston: Pearson Education, Allyn & Bacon.

Harding, S. (Ed.). (1997). Feminism & methodology. Bloomington, IN: Indiana University Press.

Hartigan, J. (1999). Racial situations: Class predicaments of whiteness in Detroit . Princeton, NY: Princeton University Press.

Hartman, C., Macintosh, B., & Englehardt, B. (1983). The neglected and forgotten sexual partner of the physically disabled. Social Work, 28, 370-374.

Hiranandani, V. S. (1999). Participatory action research with women with disabilities: Community collaboration in Ontario, Canada. Unpublished thesis, Tata Institute of Social Sciences, Bombay, India.

Ingstad, B., & Reynolds-Whyte, S. (1995). Disability and culture: An overview. In B. Ingstad, & S. Reynolds-Whyte (Eds.), Disability and culture (pp. 3-31). Berkeley: University of California Press.

Krausz, S. (1988). Illness and loss: Helping couples cope. Clinical Social Work Journal, 16(1), 52-65.

Levine, J., (1997). Re-visioning attention deficit hyperactivity disorder. Clinical Social Work Journal, 25(2), 197-211.

Linton, S. (1998). Disability studies: Not disability studies. Disability and Society, 13, 525-541.

Locust, C. (1985). American Indian concepts concerning health and unwellness . Unpublished manuscript.

Mackelprang, R, & Hepworth, D. (1987). Ecological factors in rehabilitation of patients with severe spinal cord injuries. Social Work in Health Care, 13(1), 23-38.

Mackelprang, R. W. (1993). Social work education and persons with disabilities: Are we meeting the challenges? Paper presented at the annual program meeting of the Council of Social Work Education, New York.

Mackelprang, R., & Salsgiver, R. (1996). People with disabilities and social work: Historical and contemporary issues. Social Work, 41(1), 7-14.

Marx, K., & Engels, F. (1994). History as class struggle . Excerpts reprinted in R. Collins (Ed.), Four sociological traditions . New York: Oxford University Press.

May, G. E. (2005). Changing the future of disability: The disability discrimination model. In G. E. May & M. B. Raske (Eds.), Ending disability discrimination: Strategies for social workers (pp. 82-98). Boston: Pearson Education, Allyn & Bacon.

McDermott, R. P., & Varenne, H. (1996). Culture, development, disability. In R. Jessor, A. Colby, & R. A. Shweder (Eds.), Ethnography and human development (pp. 101-126). Chicago: The University of Chicago Press.

Morris, J. (1991). Pride against prejudice. Philadelphia: New Society Publishers.

Morrison, K. & Finkelstein, V. (1992). Culture as struggle: Access to power In S. Lees (Ed.), Disability Arts and Culture Papers. London: Shape. Retrieved November 27, 2004 from http://leeds.ac.uk/disability-studies/archiveuk/index

Moxley, D. (1992). Disability policy and social work practice. Health and Social Work, 17(2), 99-103.

Oliver, M. (1983). Social work with disabled people. Basingstoke: Macmillan.

Oliver, M. (1990). The politics of disablement: A sociological approach . New York: St. Martin’s Press.

Oliver, M. (1996). Understanding disability: From theory to practice. Basingstoke: Macmillan.

Parry, J. (1980). Group services for the chronically ill and disabled. Social work with groups, 3(1), 59-67.

Patterson, K. A. (1997). Representations of disability in mid twentieth-century southern fiction: From metaphor to social construction (Doctoral dissertation, University of California at Santa Barbara). Dissertation Abstracts International, 38, PS 261.

Pfeiffer, D. (1992). Disabling definitions: Is the World Health Organization normal? New England Journal of Human Services, 11, 4-9.

Pfeiffer, D. (1993). Overview of the disability movement: History, legislative record, and political implications. Policy Studies Journal, 21, 724-734.

Pfeiffer, D. (1996). Understanding disability policy: [A review of] Michael Oliver, Understanding Disability: From Theory to Practice (New York: St. Martin’s Press, 1995). Policy Studies Journal, 24 , 157-159.

Pfeiffer, D. (1998). The ICIDH and the need for revision. Disability & Society, 13, 503-523.

Pfeiffer, D. (2001). The conceptualization of disability. In S. N. Barnartt & B. M. Altman (Eds.), Exploring theories and expanding methodologies: Where we are and where we need to go (pp. 29-52). New York: Elsevier Science.

Pfeiffer, D. (2005). The conceptualization of disability. In G. E. May & M. B. Raske (Eds.), Ending disability discrimination: Strategies for social workers (pp. 25-44). Boston: Pearson Education, Allyn & Bacon.

Pfeiffer, D., & Yoshida, K. (1995). Teaching disability studies in Canada and the USA. Disability & Society, 10, 475-500.

Priestley, M. (1999). Disability politics and community care. London: Jessica Kingsley.

Quinn, P. (1995a). Social work education and disability: Benefiting from the impact of the ADA. Journal of Teaching in Social Work, 12(1), 55-71.

Quinn, P. (1995b). Social work and disability management policy: Yesterday, today, and tomorrow. Social Work in Health Care, 20(3), 67-82.

Raske, M. (2005). The disability discrimination model in social work practice. In G. E. May & M. B. Raske (Eds.), Ending disability discrimination: Strategies for social workers (pp. 99-112). Boston: Pearson Education, Allyn & Bacon.

Ringma, C., & Brown, C. (1991). Hermeneutics and the social sciences: An evaluation of the function of hermeneutics in a consumer disability study. Journal of Sociology and Social Welfare, 18(3), 57-73.

Saleebey, D. (Ed.). (1997). The strengths perspective in social work practice (2nd ed.). New York: Longman.

Sapey, B., & Hewitt, N. (1991). The changing context of social work practice. In M. Oliver (Ed.), Social work: Disabled people and disabling environments. London: Jessica Kingsley.

Scotch, R. (1984). From good will to civil rights: Transforming federal disability policy . Philadelphia: Temple University Press.

Shapiro, J. (1993). No pity: People with disabilities forging a new civil rights movement . New York: Times Books/Random House.

Solomon, B. B. (1976). Black empowerment . New York: Columbia University Press.

Solomos, J., & Back, L. (1996). Racism and society. New York: St. Martin’s Press.

Stiker, H. (1982). A history of disability . Paris: Aubier Montaigne.

Stone, D. (1984). The disabled state. Philadelphia: Temple University Press.

UPIAS (1976). Fundamental principles of disability. London: Union of the Physically Impaired Against Segregation.

Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability . New York: Routledge.

Wendell, S. (1997) Toward a feminist theory of disability. In L. J. Davis (Ed.), The disability studies reader (pp. 260-278). New York: Routledge.

Witkin, S. L. (1990). The implications of social constructionism for social work education. Journal of Teaching in Social Work, 4, 37-48.

Witkin, S. L. (2001). The measure of things. Social Work, 46(2), 101-104.

Woodill, G. (1992). Independent living and participation in research: A critical analysis. Discussion paper. Toronto: Center for Independent Living.

Zola, I. K. (1983). Medicine as an institution of social control. In I. K. Zola (Ed.), Socio-medical inquiries (pp. 247-268). Philadelphia: Temple University Press.

Zola, I. K. (1989). Toward the necessary universalizing of a disability policy. The Milbank Quarterly, 67(2), 401-428.

 


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