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Interpreting Conceptualizations of Health among Persons with Disabilities through Critical Social Theory

Beth A. Marks and Jasmina Sisirak

Introduction 1

The arts and humanities have long benefited through the "troubled" geniuses of artists throughout many parts of the world. John Milton, an English poet and prose polemicist (1608–74), lost his sight at age forty-three and went on to create his most famous epic in 1663, Paradise Lost (Williams 2006). While the "voice" of many artists has been incorporated into the visual, literary, and performance arts, we often fail to appreciate how their unique perspectives as artists with disabilities stimulates their artistic richness (Williams 2006).

     In this paper, we examine some contemporary definitions of health and discuss the utility of broadening our conception in ways that will facilitate the empowerment and participation of people with disabilities. Although we are highlighting societal issues in America, the issues pertain globally because institutions like the United Nations are increasingly including people with disabilities in their mandates. Anthropologists, medical scholars, and practitioners, among others, have long observed that notions of "health" and "illness," like notions of "personhood," vary widely across cultural and linguistic borders, as well as within subcultural groups and communities. We propose that understanding divergent views of what counts as "health" among American persons with disabilities can shift us from a prevailing societal paradigm that defines people with disabilities as "sick," "ill," or "afflicted" to a more inclusive model that perceives disability as a natural part of human experience, like race and gender. Likewise, critical attention to oppositional categories such as able/disabled or healthy/sick can broaden our understanding beyond a view that people with disabilities are objects of pity or in need of fixing. We can instead perceive of people with disabilities as capable citizens whose skills and talents are needed and valued by the community.

     Our focus on disability contributes to the anthropology of human movement and the theme of this conference by including persons whose capacities for using their bodies and bodily movement are extraordinary in ways not previously considered within this field. We suggest that redefining concepts of 'people with disabilities,' in turn, provides for an expansion of the usual boundaries that exist around the categories 'art,' 'artist,' 'dancer,' and 'dancing.'

Conceptions of Disability

Today, the World Bank and other authorities estimate that as many as 600 million people with disabilities1 live around the world--approximately 10 percent of the world's population. Although they represent one of the largest minority groups, people with disabilities worldwide still struggle to be accepted on equal, independent terms without being patronized, segregated, or victimized in an antiquated social-services system and a prejudiced society (Shapiro 1994). The societal norms that views disabilities as barriers to be overcome and sources of pity not only objectifies people, but it minimizes the intrinsic capacity that people with disabilities have in realizing their full potential as human beings.

     Older assumptions2 that conceptualize disability only as a "limitation," a "weakness," or a "barrier to be overcome" are increasingly being challenged. People with disabilities frequently state that they are treated as a "diagnosis" and not as people (Gill 1996). As people with different types of disability come together to form a cross-disability community and redefine the roles and impact of people with disabilities within American communities, they no longer want to be viewed merely as a "pathological" condition. As noted by disability-rights activist and writer Sarah Triano, "[T]he barrier to be overcome is not my disability; it is societal oppression and discrimination based on biological differences (such as disability, sex, race, age, sexuality, etc.)" (1997: 3). Moreover, disability has been defined "as a natural and beautiful part of human diversity that people living with disabilities can take pride in" (Triano 1997: 3).

     To understand the unique perspectives that the experience of disability may bring to individuals requires a disentangling of definitions constructed by mainstream American society. Viewing people with disabilities as deficient, abnormal, or sick and in need of prevention, correction, or assimilation is a widespread attitude experienced by many people with disabilities (Gill 1997). This one-dimensional, medicalized definition often stigmatizes people with disabilities and restricts their ability to express themselves fully and participate as members of a cohesive and proud sociocultural group.

     A need exists to examine conceptualizations and definitions of health within the context of the unique lives of persons with disabilities, thereby providing an understanding of the meaning of health from their perspective. We have found that this process in itself serves to emancipate people with disabilities through reclaiming a sense of individual identity and empowering a sense of group identity.

Cultural Minority

Many societies have made significant strides toward overcoming a long history of fear, prejudice, and exclusion of people with disabilities (Marks 2000). There was a time when people with disabilities were kept at home or in institutions. There was a time when the prevailing view of disability was based on the medical model--people were seen as objects in need of repair. There was a time when we assumed that people with disabilities could not fully participate in life activities, hold jobs, or become leaders--Franklin D. Roosevelt, thirty-second president of the United States, even hid his disability out of fear that people would deem him incapable of leadership because he could not walk (Block 1998). Since the end of World War II, we have increasingly moved away from segregating people with disabilities from the general population and from viewing them as a group in need of care, philanthropy, and charity (GLADNET 1999).

     As people with all types of disabilities began to share their experiences of social stigma, isolation, and second-class citizenship, they began to view themselves as part of a disability community.3 The 1998 National Organization on Disability (NOD)/Harris national survey data documented that, in the United States, 84 percent of disabled people feel some sense of identity with others who have disabilities (compared to 81 percent in 1994 and 74 percent in 1986) and that 52 percent of those have either a somewhat strong to a very strong sense of common identity (Louis Harris & Associates, Inc. 1998).

     Additionally, in 1986, 45 percent of disabled people surveyed felt that people with disabilities are a minority group in the same sense as African-Americans and Hispanics (Louis Harris & Associates, Inc. 1998). However, unlike other minority groups, because people with disabilities have frequently grown up in isolation from each other, disabled people often do not have an opportunity to develop a sense of subculture or shared experiences (Johnson 1987). Although parents, siblings, and other family members often do not share their disability status, people with disabilities are beginning to identify as members of a sociocultural group that crosses diagnostic boundaries. In the process of forming a community, people with disparate disabilities discovered a common identity and with it a need to claim their human rights.

     In 1990, the passage of the Americans with Disabilities Act (ADA), similar in many ways to the United States's Civil Rights Act of 1964, ended discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, bringing fundamental rights and equality to all Americans. As a civil-rights law, the ADA opened new possibilities for people with disabilities through its focus on outmoded societal attitudes and practices that prohibit and/or restrict access for people with disabilities. Moving beyond the typical view of disability as a pathological medical condition or physiological impairment, the concept of disability is now increasingly seen as being derived from the interaction between individual and society--an environment that can either be welcoming or excluding. For many people with disabilities, architectural and attitudinal barriers are seen as central to disablement (Block 1998). Additionally, as a "normal part of life," disability may be experienced by almost everyone. For some, disability may be perceived as a shift from the norm; nonetheless, the presence of persons with disabilities often gives meaning and purpose, along with enriching the lives of families, friends, and communities.

     Similar to other minority groups across the world, people with disabilities are gaining more control over definitional issues by renaming themselves in accordance with their own perspective. On March 30, 2007, for example, eighty countries signed the United Nations Convention on the Rights of Persons with Disabilities. The document's preamble states that "disability is an evolving concept and that disability results from the interaction between persons with impairments and the attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others" (United Nations 2006). Expanding the definition of disability beyond "illness" shifts the perception of individuals with disabilities to that of being healthy and active participants in their communities.

Reclaiming Identity: Moving beyond Pathology

The legal changes that have occurred over the past thirty years continue to have a dramatic impact on the lives of individuals with disabilities. Unfortunately, however, despite the creation of laws protecting their rights, disabled persons are still deprived of many opportunities due to unnecessary barriers and fears. The NOD/Harris survey found that Americans with disabilities continue to lag well behind Americans without disabilities in many key areas of community life, such as securing jobs, pursuing postsecondary education, and obtaining accessible public transportation and health care (Louis Harris & Associates 1998).

     Worldwide, statistics show that 80 percent of persons with disabilities live in low-income countries, the majority are poor and cannot access even basic services, and they reportedly have twice the rate of nonparticipation in the labor market compared to persons without disabilities (United Nations 2006). However, the rise of the Internet and computer-related technology in the 1990s has enabled people with disabilities around the world to form alliances with each other. Those living in different cultures are now radically altering their attitudes and beliefs about themselves by deconstructing the experiences that truly limit them.

     Emerging technology also began to change disabled people's conceptions about the boundaries of their bodies--and their thinking as well. For example, Simi Linton, codirector of the Disability Studies project at Hunter College, New York, proclaimed, "[W]e are all bound together, not by this list of our collective symptoms, but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning" (Linton 1998: 4). Looking back, we can see that The World Programme of Action concerning Disabled Persons adopted by the United Nations in 1982 marked the beginning of a systematic worldwide adoption of the sociopolitical model of disability in contrast to the biomedical model.

     As with other minority groups in American society, the continued disparities that exist between people with disabilities and their nondisabled peers have meant that the former are gaining more control over definitional issues by renaming and redefining themselves in accordance with their own perspective. For example, social, political, and economic barriers are considered a large part of daily concerns, not just intrinsic limitations of disability. This process reclaims a sense of individual identity and empowers group identity.

     People with disabilities often state that people's reactions toward them are more difficult to cope with than their disability. Ironically perhaps, many of these reactions come from health-care professionals who are often the first point of contact for people with disabilities across the lifespan. Because such professionals are trained to define health for people with disabilities based on etiology, diagnosis, physical changes, and treatment, people with disabilities often do not have the opportunity to construct their own explicit definitions that include influences from daily life, as is done in the general population (Hornsten, Sandstrom, and Lundman 2004). Understanding how people define their own health is critical, however, since not taking this into consideration can result in conflicting expectations about one's achievement of goals, priorities, and full humanity.

Divergent Views of Health

Scientific research over the past century has generated a tremendous increase in medical discoveries and with them a social context in which health came to be defined as the freedom from disease. In the discipline of medicine in the Western world, for example, a definition of health continues to be used whereby absence of the word health, by default, indicates the presence of 'illness' and vice versa (Tripp-Reimer 1984). Another view extends this dichotomous view of health (as 'not illness') into a continuum that places health and illness at either end of a line. Both of these conceptualizations, however, define health negatively from a disease/illness perspective, as a model of deficiency rather than a positive perspective. During the twentieth century, as individuals became more health-oriented and dissatisfied with the fixation on disease, conceptualizations of health began to shift from a negative to a positive view. By 1959, Dunn proposed that good health was not a single amorphous condition but a complex state comprised of multiple dimensions of wellness.

     For people with disabilities, however, health as the absence of disease or impairment--a one-dimensional domain--is still commonly applied to them by health professionals. Unfortunately, while American health professionals often receive less than three hours of education on disability-related issues during their professional training, their views have a tremendous impact on how people with disabilities define themselves and their position within the society in which they live. Restricting definitions of health to this one-dimensional medical definition rather than incorporating a multidimensional definition of disability limits a full understanding of the disability experience and completely disregards the impact of attitudes and environment.

     For health-care providers, the one-dimensional paradigm translates into a perception that, if a person has a disability, he or she is 'sick,' and therefore in need of ongoing medical care according to the traditional disease model. Thus, a person with a disability is seen as not being 'healthy' or even having the capacity to be 'healthy.' A residual effect of this paradigm is the narrow conceptualization of health for people with disabilities within the disease model, even though research data in the United States suggest that people with disabilities, like people in the general population, have multidimensional views of health--as more than not having aches and pains (Marks 1996). This perspective conflicts with the predominant one-dimensional definition of health as one extreme of the aforementioned health-illness continuum that is held by many health professionals practicing within the medical model (Smith 1981).

Multi-Dimensional Views of Health

Although a common, agreed-upon definition of health does not exist currently, conceptualizations among particular groups have been examined. Studies among the general population have consistently shown that individuals other than health professionals have multidimensional views concerning health. The World Health Organization also legitimizes a broad definition of health by emphasizing positive qualities and including factors beyond absence of disease and infirmity. In contrast, as mentioned above, many American health professionals define health for persons with disabilities using the one-dimensional domain--as the absence of disease or impairment.

     Ambiguity surrounding definitions of health may relate to several factors: (1) attributes of health are undetermined, (2) health concepts vary across cultures, and (3) concepts of health are partially derived from broader cultural concepts and ideas. A uniform definition is difficult to obtain because such ideas are informed by messages from one's social environment, including cultural beliefs and practices regarding health, parental and sibling behaviors and ideas, and messages from peers about health.

     Since people with disabilities often do not have family members or peers that share their disability status, understanding their conceptualizations of health is imperative. These may differ from their peers without disabilities by virtue of variations in physical, social, cognitive, and emotional abilities. Studies of the concept of health across persons with a variety of disabilities show that they hold multidimensional views of the kind that parallel their nondisabled peers but also incorporate their life experiences with disabilities (Marks 1996).

Critical Social Theory

We have found that an approach to research known as critical social theory (CST)4 provides a useful framework for understanding health conceptualizations. CST is a multidisciplinary knowledge base similar to general social theory but with the implicit goal of advancing the emancipatory function of knowledge (Leonardo 2004). CST seeks to liberate individuals from both conscious and unconscious constraints that interfere with balanced participation in social interaction (Wilson-Thomas 1995). Critical social theorists, thus, seek to deconstruct so-called objective (i.e., positivist, value–free) science and challenge ideologies that are potentially oppressive and coercive. By examining underlying social relationships and social conditions, critical social theorists aim to uncover hidden power structures and critique and challenge ideologies that perpetuate social injustice.

     Assuming that societal attitudes as well as individual concepts and values influence perceptions of health, concepts of health can be analyzed by either (1) incorporating data about the reactions of the individual and the social group or (2) using externally derived criteria to examine and compare objective, observable, and quantifiable terms. While what counts as 'disability' may be defined from a biomedical perspective in objective, observable, and quantifiable terms, we maintain that analyzing health conceptions among people with disabilities requires an understanding of the reactions of the individual and the social group toward the disability. Critical social theory has allowed us to uncover and deconstruct the many cultural factors influencing the definitions of health, including perceptions and labeling. We use it to challenge traditional norms and to reveal hitherto undiscovered meanings and constraining sociopolitical barriers (Wilson-Thomas 1995).

     Extending health conception beyond a biomedical perspective incorporates two fundamental concepts (Cardus and Thrall 1977). The body is first conceived as a system, which must then adapt to a certain environment. Within this framework, an individual with a disability can define health across multiple domains and then attempt to achieve and maintain equilibrium across these domains. For example, such domains might include the organism or bodily system's ability to adjust and adapt, along with having the physical capacity to fulfill personal expectations and also perform social roles and tasks within the environment.

Critical Consciousness for Understanding Definitions of Health

We have found that applying CST to understanding concepts of health among persons with disabilities fosters an emancipatory spirit of "wide awakening" to persons with disabilities through the following activities: (1) generating new knowledge as it challenges previously established ideologies, (2) rejecting positivist notions of "scientific objectivity" as the sole mediator of rational thought and validating the unique perceptions and experiences of people with disabilities, and (3) understanding lived experiences of people with disabilities in the context of their day-to-day experiences to move beyond rigid societal norms and expectations.

     In general, across studies, most people with a variety of disabilities rate their overall health as good or excellent (70–85 percent), which is similar to the general population. For people with disabilities, however, health conceptualizations often provide a foundational structure that may limit community and societal engagement. Understanding the ways one is oppressed enables one to take action to change oppressive forces. We find that the knowledge that is created through our application of CST empowers people to understand how they may act to realize their best interests and thereby bring about social change.

Definitions of Health

As mentioned earlier, studies among persons with a variety of disabilities show that they hold multidimensional views concerning the concept of health, views that, in fact, parallel their peers without disabilities. These include such things as eating healthy foods, being physically able to do things, having intimate relationships, not being in pain, being able to deal with negative remarks, being able to express thoughts, having plenty of people who love them, doing things for themselves (Marks 1996). People also incorporate their own life experiences as persons who have disabilities and/or health conditions. For example, a person with a disability may say the following: "I'm healthy when I use my wheelchair" or "I'm not healthy when I'm not using my wheelchair," and "I'm healthy when I take my pills for my diabetes" or "I'm healthy when I don't have to take pills." Adults with disabilities may also state that they are healthy even though they have a chronic condition or disability (Marks 1996). People with disabilities also note that they are healthy when they are able to help others, receive care from others, take medications related to disability or health condition, or have the capacity to "use a wheelchair," which promotes independence for mobility.

     Like their peers without disabilities, people with disabilities cite similar influences on their definitions of health, although specific features may vary. In general, definitions of health can be viewed from several different domains--physical, social, emotional, spiritual, and intellectual. For example, some people feel perfectly healthy when they are not sick. That is, they are thinking of not being sick in terms of physical definitions, such as having no aches or pains, feeling strong, or not having any illness or disease. These definitions are used to define physical health. Other people define health using a social health definition. They will say that they are healthy when they feel comfortable where they live and work and have close relationships with others. Emotional definitions of health can include things such as liking yourself, being able to do the things that you want to do, or handling stressful events. Spiritual health definitions include feelings of satisfaction, happiness, and sense of purpose with life. Finally, some people also define being healthy using an intellectual health definition, which includes an ability to learn and use knowledge.

     In sum, what health means to each of us depends not merely on our physical and/or mental condition or capacities but on our needs, goals, and life experiences, as well as where we live, work, and have fun. For American individuals with disabilities, health concepts may differ from their peers without disabilities due to differences in physical, social, cognitive, and emotional abilities, but people with disabilities may report views of health similar to those expressed by their peers without disabilities.

Loss of 'Self' and Representation

A lack of exposure to valued self-images has the effect of subverting one's essence. Bury (1982) refers to this as part of "biographical disruption," a combination of disabling symptoms and the cultural imagery surrounding particular health conditions. The realization that medical knowledge is incomplete and that treatment is based on practical trial and error often throws individuals back on their own stock of knowledge and biographical experience. Disruptions can occur when the values of health professionals overshadow those of lay persons (Zola 1991) and do not account for the unique experiences associated with having a disability. Moreover, oppression occurs when one's human essence is subverted.

     The lack of representation of people with disabilities in the visual, literary, and performing arts contributes further to their sense of a 'loss of self.' For example, the media routinely have nondisabled artists portraying disabled people5 and depicts people with disabilities in stereotypical views that do not challenge assumptions (Barnes 1992). Paul Longmore, a historian and disability activist, notes that, if stereotyping of people with disabilities has prevailed in both fictional and nonfictional television programing, people with disabilities, until recently, have been virtually excluded from potential acting roles (Longmore 2003: 144). Pamela Walker's essay titled "Artists with Disabilities: A Cultural Explosion" describes the systematic exclusion of her participation in the visual and performing arts while growing up as a child with a disability:

Art did not become a major part of my life until I reached my thirties. This was not because I lacked creativity, nor because I wasn't interested, it was because this was an area that I just accepted belonged to the non-disabled world--a lifetime of experience had taught and reinforced this perception. During my school years I had not been able to take art classes because I lacked shoulder muscles and no one thought to move the drawing paper from the easel to the table-top. I was unable to take music classes because a few times a year the group would travel to give concerts and the school had no accessible means of transportation for me. I was unable to get involved in theater and drama because the stage had no ramp. (Walker 1998: 2)

Stereotypical views of people with disabilities portrayed in the media and widely circulated consist of the following: pitiable and pathetic, objects of violence, sinister and evil, super cripple (overcomer), an object of ridicule, their own worst and only enemy, a burden, sexually abnormal, and incapable of participating fully in community life. Jenny Morris (1991) argues persuasively that portrayals of disability are usually about the feelings of nondisabled people and their reactions to disability. In many portrayals, disability becomes a metaphor for the message that a nondisabled writer wishes to convey.

     Oftentimes, the writer presents the prejudice, ignorance, and fear directed toward disabled people. Wheelchairs are an iconic symbol of disability and are frequently used in both film and dance works; however, the majority of the actors and dancers playing the part of a disabled person are not disabled. Use of the wheelchair allows characters to have an obvious disability, while maintaining the appearance of normalcy. The assumption is that this allows the audience to identify more readily with the character (Roper 2003). Conversely, using disability as a metaphor for evil or to induce a sense of unease confirms the cultural stereotype (Morris 1991: 93).

Transformative Expressions

Artistic expression through the literary, visual, and performing arts is generally viewed as a hallmark of self-expression and signifies engagement with community and society. For people with disabilities, self-expression in the arts empowers them to become engaged as full citizens within their communities and, in the process, redefines how we all perceive art and the potential of the human body. New questions emerge such as, "What is 'dancing' when performed by artists who use wheelchairs?"

     World-renowned artists of the performance, visual, and literary arts are currently changing perceptions about disability and what it means to be disabled. For example, Evelyn Glennie is a deaf percussionist from Scotland. Esref Armagan is a Turkish painter who, blind from birth, has never been able to see nor understand colors as seeing people do, yet Armagan considers that he has "the eyes to see with" in terms of expressing a powerful visual imagination.

     Likewise, Tekki Lomnicki is artistic director of Tellin' Tales Theatre, a company that includes adults and children with and without disabilities dedicated to building community through storytelling and bringing diverse people together. A primary aim is to assist the audiences and performers to recognize their commonalties and build a sense of community where none existed before. And recently, Bodies of Work: The Chicago Festival of Disability Arts and Culture took place in Chicago, Illinois, showcasing disability artists and their work over a ten-day period. The festival was the first disability arts-and-culture festival in the country and brought together more than fifty arts, educational, health-care and social-service organizations dedicated to recognizing the value of disability arts.

The Arts and Challenging "Ways of Knowing"

Our views on health come from our personal as well as cultural points-of-view, and we take it for granted that our minds and bodies work together to keep us healthy. If individuals do not perceive the importance of the relationship between multidimensional definitions of health and overall health status, they may not embrace lifestyle behaviors that enhance health status. A growing body of literature voicing the experiences of people with disabilities suggests a need to create new spaces for self-expression in the performing, visual, and literary arts. More than this, however, integrating performing, visual, and literary arts within health care can transform and humanize care. Creative expression of life, emotions, and experiences challenge established "ways of knowing" and present new paradigms for health and the arts.

Empowerment, Emancipation, and Community Participation

Freire (1970: 90) suggests that critical consciousness is the key ingredient in realizing empowerment. Nurtured through group dialogue in a process known as 'conscientization,' it aims to uncover the political roots of people's individual experiences of powerlessness and oppression. Dialogue is fundamental to empowerment and emancipation and can foster different ways of knowing, emphasize the subjective, lived experience, and encourage respect for diversity. While empowerment can be considered both a process and/or an outcome, many theorists have described empowerment primarily as a process. A series of experiences in which individuals learn to see a closer correspondence between their goals and a sense of how to achieve them, gain greater access to and control over resources, is a means for people to gain mastery over their lives. Increasing personal, interpersonal, or political power enables individuals, families, or communities to take action to improve their circumstances.

     Creative expression of life challenges, emotions, and experiences is critical for people with disabilities to achieve emancipation and community participation. Changing definitions of health requires active inclusion of people with disabilities in the performance, visual, and literary arts. Many of the changes that viewers and listeners would like to see take place can be described as 'respect' issues, including the following:

  • respecting the diversity of disability and portraying those varied experiences

  • incorporating the views and abilities of people with disabilities and consulting with them to provide more authentic and credible portraits

  • engaging media professionals with disabilities in all aspects of production across all genres

By including people with disabilities in all forms of art, we can begin to question all our assumptions about the possibilities of art and movement, subsequently expanding and enriching the art form itself. Instead of viewing people with disabilities as objects of pity or fear, we can gain new perspectives of the 'ideal' (Axis Dance Company 2009).

     While the promotion of human rights for people with disabilities is a fundamental criterion for achieving community engagement, the portrayal of disability as a part of daily life through media and the arts is the only way to make it an 'ordinary' experience. We have found that using critical social theory to interpret new meanings of health among persons with disabilities allows us not only to accept the reality of oppression but also articulate the possibility of a less oppressive condition (Leonardo 2004). Irving Zola, internationally known activist and writer in the fields of medical sociology and disability rights, states,

If one has been oppressed for thousands of years, one does not gain a voice overnight. One of the features of oppression is the loss not only of voice but of the tools to find it. . . . It will take us time to speak out, to learn what we have lost, to articulate what we need. But as I have tried to state here and elsewhere, the numbers trying to speak out are ever growing and the chorus of voices is increasingly diverse. (Zola 1994: 65)

By engaging individuals to tell their own stories, we will, in turn, create a more accurate reflection of societal discrimination and provide an opportunity to improve public attitudes.

Concluding Remarks

The majority of Americans still tend to view people with disabilities from a pathological perspective. We have indicated how critical social theory challenges these perspectives and allows us to consider the unique perspectives of persons with disabilities. As we redefine our conceptualizations of health for people with disabilities, we learn that, in fact, they view their own health from a multidimensional perspective similar to the general population and that the majority see themselves as healthy and interested in the range of activities available (Marks 1996). We find that, as people with permanent disabilities incorporate their disability into everyday life, they find that there is no pity or tragedy in disability; rather it is society's myths, fears, and stereotypes that make being disabled difficult (Shapiro 1994). We have proposed that, through active inclusion and participation in the performing, visual, and literary arts, people with disabilities as healthy members of society can neutralize the tragedy-centered portrayals assigned to them with a representation that reflects their own unique perspectives. By deconstructing experiences and challenging oppressive and coercive ideologies in ways described above, we can begin to illustrate the influence that disability experiences exert in redefining concepts of health.


1 This article will use the three-part definition of disability from the American with Disabilities Act (ADA) of 1990. Under the ADA, an individual with a disability is a person who (1) has a physical or mental impairment that substantially limits one or more major life activities--that is, the nature and severity, how long it will last or is expected to last, and its permanent or long-term impact or expected impact; (2) has a record of such an impairment--this protects people who have a history of a disability from discrimination, whether or not they are currently substantially limited in a major life activity; or (3) is regarded as having such an impairment. The ADA stands with women's suffrage and the Civil Rights Act of 1964 in its effort to bring fundamental rights and equality to all Americans. The ADA defines physical impairment as "Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine." A mental impairment is defined by the ADA as "any mental or psychological disorder, such as intellectual disability, organic brain syndrome, emotional or mental illness, and specific learning disabilities." Neither the statute nor the regulations list all diseases or conditions that make up "physical or mental impairments" because it would be impossible to provide a comprehensive list, given the variety of possible impairments. A physical condition that is not the result of a physiological disorder (e.g., pregnancy) or a predisposition to a certain disease is not an impairment (Disability and Business Technical Assistance Center 2008).

2 Northway (1997) notes a common perception: people with disabilities are often considered incapable of participating in community life and are in need of constant medical care because of their impairments. Smeltzer (2007) delineates several models that are used in "developed" countries to understand disability, ranging from the "medical model," "rehabilitation model," "social model," "interface model," and "biopsychosocial model." Health-care providers frequently use the medical model to develop treatment approaches for people with disabilities. Within the medical model, being disabled is inherently negative in that it is a deficiency and/or abnormality. The disability is thought to reside within the person, with the remedy for disability-related problems focused on cure or normalization of the individual, and the agent of the remedy is the professional (Gill 1994). This is not to denigrate the value of the care that is provided in this framework but to illustrate the point that this model views people through the lens of a medical diagnosis.

3 Disability activists and scholars have achieved many successes in the disability-rights movement over the last century. The emergence of Disability Studies as an interdisciplinary field of study on the history, contributions, experiences, and culture of people with disabilities is growing worldwide. A primary aim of Disability Studies is to challenge the way in which disability is constructed in society through the development of theoretical, research, educational, and advocacy models to remove the legal, physical, policy, and attitudinal barriers that exclude people with disabilities from society. Disability Studies can benefit people with disabilities, as well as members of the rest of society, by increasing the participation and presence of people with disabilities in our schools, neighborhoods, workplaces, and our lives.

4 Zeus Leonardo (2004) notes that critical social theory finds its lineages in at least three areas of inquiry: (1) philosophy and literature--critical theory engages debates in aesthetic as far back as Greek thought; (2) the Frankfurt School's programmatic study of a Kantian theory of knowledge coupled with a Freudian-Marxist theory of modern society, and (3) critical theory is related to social theory, which is a broader category of theoretical production than critical theory that includes subsets like sociological and anthropological theory, race and ethnic theory, cultural theory (see Lemert 1993). Its multidisciplinary knowledge base is typical of both critical and social theory.

5 This is akin to the popular blackface practice during the 19th century, where whites routinely portrayed the black characters in the United States in minstrel shows, vaudeville, and around the world. Today, blackface has become associated with racism worldwide.

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