Harrison, Tracie C. MSN, RN CS, FNP; Kahn, David L. RN, PhD
DISABILITY: CULTURALLY CREATED AND DEFINED
Disability is defined through the social and bodily experiences of persons within their culture. Disability is based on physical impairment, but also evolves beyond the strict biomedical definition of cellular or organ damage. It is an experience of the impaired body within society. 5–6 Disability reflects knowledge constructed within society 7 to provide a means for understanding the experience of physical difference and how it influences the human capacity to function within a specified environment.
According to Olkin, 8 there are multiple reasons for why persons may develop disabilities. The most common are heart disease, back problems, arthritis, diabetes, and orthopedic impairment of the upper or lower extremities, 8 such as those caused by polio infection or traumatic injury. Some causes of disability are not clear, such as fibromyalgia and chronic fatigue syndrome. Other persons have impairments related to cognitive or mental illness. Moreover, most people have more than one disease that impairs their bodies and causes a disability, 8 and the longer they live with a disability, the more likely they are to develop secondary conditions or co-morbidities.
There are multiple factors within and around individuals that influence their psychological and physical reactions to impairment. The course of the disease, outcome of the disease, degree of incapacity, degree of uncertainty, the individual's perceived health, the phase of disability, family environment, and individual development all influence the effect of the disability for each person. 8 Livneh and Antonak 9 reviewed the literature surrounding ecological views of adaptation to disability and created a synthesized framework. Within this framework, four classes of variables were proposed for the understanding of persons with disabilities. Variables associated with disability (such as age at onset and type of disability) and variables associated with the sociodemographic characteristics of the individual (such as chronological age, developmental stage, and job history) are included. Also included are variables associated with personality of the individual (such as coping strategies, personal meaning of the condition, and perceived control) and variables associated with the characteristics of the physical and social environment (such as the social support system, economic support, and attitudinal barriers). 9 These four classes of variables influence the individual's adaptation over time. Researchers have recognized that disability is an individual, dynamic process with multiple external influences that are not predictable for each disease or impairment. 8,9
Multiple factors influence the adjustment process for persons with disabilities, partly because of the numerous cultural influences regarding how a person perceives the body. The biological impact of the disability upon the person is never without the impact of the culture, since the culture consists of the meanings assigned to the function and appearance of the body. 10 For example, wheelchairs, bedpans, and altered bodies have specific meanings in Western culture. Wheelchairs are seen as devices to transport those who are sick or unable to transport themselves—a symbol of inability. The impaired body has been a sign of destruction or failure and is often used by the medical community to convey a message of achievement, as when presented as “before” and “after” pictures that indicate a repaired or cured body as the end result. 11
Culture influences people's perceptions of the body. Goffman's 12 classic work on stigma describes the perceptions of persons with disabilities—visible or invisible. Goffman's description of the social barriers experienced by a girl without a nose is an exemplar of how the social experiences can be much worse than the physical experiences. The girl was able to live with her impairment, but found people's reactions to her to be the most difficult part of her life. This type of social experience, shared by many persons with disabilities, is the resultant from interactions with local culture.
Cultural influences on perceptions of disability are also found in the language used to describe the body. Signs of negative attitudes toward people with disabilities are seen in the Western culture through the language used to describe those who have been labeled as disabled. 13 Linton 14 has described how language reinforces the cultural practices of those without disabilities. Some language describing persons with disabilities is intended to be nice, such as “physically challenged” and “special people/children,” 14 but it can also be characterized by negative words, such as “cripple,” “vegetable,” or “retard.” Language, whether intended to be helpful or hurtful, can segregate persons into an “abnormal” or “other” group. The attitudes reflected in the language influence life-course achievements and can limit the person's ability to lead a fulfilling life. 15 These attitudes also influence legislation and economic programs that provide needed services. 16 Given the importance of shared cultural meanings, it is imperative to start the study of the disability experience with an understanding of culture.
People with disabilities can develop a distinct local culture based upon a shared web of meaning. 3 A web of meaning is the shared discourse that enables people to function and communicate in a social manner, and certain groups of people with disabilities have shared meanings unique from those without disabilities. It is a disability culture because the shared meanings are derived out of the social experience of being a person with an impairment that limits the ability to function in the dominant or mainstream culture. Evidence for a disability culture can be drawn from at least three examples of disability-related experiences.
First, evidence for a disability culture can be found in the deaf community. The deaf community is composed of a group of individuals with unique rules, language, and behaviors that are best explained by currently deaf adults to the newly deaf. 17 The deaf culture is important because it enables these individuals to function in the dominant culture. When persons from the deaf culture enter into the hearing society, they become bicultural. They do not give up their original deaf culture that had provided the skills needed to communicate, which allowed their foundational understanding of the world. The hearing culture for them becomes manageable through the skills used within the deaf culture. 18
Second, evidence can be found in Brown's 19 report of investigating a culture of disability in which interviews with 7 people with disabilities from the San Francisco Bay area are discussed. All 7 had been active in the disability movement, and at least 4 were artists contributing to the aesthetic culture of disability. These individuals discussed the hardships and the joy gained from uniting with other people with disabilities. They explained their active involvement as being people who were contributing to the reduction of social barriers and to the building of a disability culture. They had attended similar meetings regularly, and they understood their friends' problems with speech, physical impairments, and access encounters. They represented a group who shared the meaning of their impairments with each other, within a local culture.
Third, Murphy 1 noted evidence of a disability culture in the variations of experiences between impaired and non-impaired people. According to Murphy, 1 it is not uncommon for persons without disabilities to feel awkward when interacting with persons with disabilities, because the meaning of the physical or mental impairment is not shared. 1 The culture of the person with a disability is often not understood by the person without a disability; questions arise about how to interact. What is the appropriate reaction to a man speaking to himself in a corner? Should you look at a person in a wheelchair and try to assess the difference between your legs and his? Are you expected to help a person with crutches carry her bags? Do you help or do you go about your business? What actions or words will offend them? Geertz 3 described the reaction to a person from an unfamiliar culture as a feeling of not being able to find one's feet with them, which is often the experience when persons with and without impairments meet.
Disability culture has been analyzed from a postmodern perspective, focusing upon the process of identity formation as mass culture developed from multiple worldviews. 20 Peters 20 argued that disability culture is a composite of history, linguistics, politics, and personal aesthetic. She described the common social experiences of identifying oneself as disabled as a unifier for people of differing disabilities across nations. The identification of oneself with pride as a person with a disability is a political position in which a person locates himself or herself.
To add support to Peters' argument, 20 there are disability movements in other countries. For example, Japan experienced change as a result of political activism by persons with cerebral palsy and through the establishment of independent living centers for people with disabilities. 21 Activists from Japan currently visit other countries with the aim of starting more independent living centers. 21 The goals, which are similar to all independent living centers, are to provide persons with disabilities the knowledge and skills to live in communities, to protect the rights of those who are institutionalized, to decrease the social and environmental barriers, and to expand services. 21
The problem with Peter's 20 analysis and conceptualization of disability culture, however, is that it relies on an assumption that a belief in the struggle is the same as the means and end result of the struggle. In other words, the belief and identification with an ideology is not the same thing as living it day-to-day and sharing those meanings with a group of people. Persons with disabilities in Japan and in the United States may be united in a battle with similar demands and conceptions of the body, but the common meanings of functioning within their local areas are different, so the ways the people express these beliefs are different. Moreover, people within the United States may unite due to a common cause that is communicated through the Internet, disability art, and literature, but the meanings behind the behaviors for communicating within their environment, as persons with disabilities, may be different. And the meaning behind the activities is what defines the culture.
A CULTURAL MODEL FOR UNDERSTANDING DISABILITY: RITES OF PASSAGE AND THE LIMINAL STATE
This section describes the anthropological origin of the work on rites of passage, and is followed by a synopsis of Murphy's work 1 applying rites of passage to disability. Finally, the rites of passage and liminal state will be expanded as a model for understanding disability culture and the creation of barriers to health.
The rites of passage were first described by Gennep 22 and later by Turner 23 to illustrate how cultures transform their young members to adult status—they move from lower status, through an ambivalent status, to a higher status within a culture. In other words, it is a cultural transformation from one social position in a culture to another position within that local culture.
The rites of passage are made of three phases: (1) the phase of initial cultural status, (2) the phase of liminality, and (3) the phase of remote cultural status. 23,24 In this process, the person experiences a separation from his or her present state and enters into an ambiguous state called liminality, which is a “midpoint or transition in a status-sequence between two positions.” 25(p.237) The liminal phase is defined by feelings of ambiguity; the person is perceived as neither dead nor alive and is often referred to in generic terms with an abstract body. 23 The person has no gender and is considered raw material waiting to be formed—with no status, property, rank, or kinship position, nothing to indicate a structural hierarchy. During the liminal phase, time is focused upon communication; the history of the culture is shared. 23 Elder leaders guide the person through a state of reflection, allowing for a questioning of the culture that encourages the personal restructuring of the culture, which brings about new meaning and makes sense of the new status. 26 Often, this is the time the person gains freedom to question his or her existence because when the rites are completed, the known cultural expectation is to stop questioning and participate in social structures. 23 During the final phase, the person reenters into society as a new member, one who earned their rites of passage.
The transformation of the body from a state of no disability to a state of disability is a rite of passage between social positions in a culture. 1 Murphy 1 used the rites of passage as a means to understand the transition in becoming a person with a disability. When individuals shift from being persons without disabilities to persons with disabilities, they realize their bodies and positions in society have changed. 24,27 For example, in an ethnographic study of heart failure, the initial realization was a disruption, which ranged from small confusion to overwhelming physical and psychological sensations. 28 The disruption of life in response to impairment is common and is often followed by feelings of anger, depression, hostility, and anxiety as the person realizes the significance of the change. 9
The realization of a change in physical status is followed by a state of ambiguity, and these persons may question their position within their culture. 23 This is the phase of liminality within the disability experience. They may experience decreased self-esteem, increased preoccupation with being disabled, and feelings of anger and of having an undesirable identity. 1 They are asked to follow the directions of health care providers without question and are stripped of their rank in society. When persons enter into an institution for treatment of their impairment, they are labeled patients and discussed as generic diseases. Upon entering hospitals, people of both genders are placed into nongendered gowns. Thus, they are gender neutral and given no privileges based on rank or social status prior to entering the hospital.
The rehabilitation setting is where most individuals with severe physical impairments learn to function after their initial disability. 27 This setting is full of rituals and nonflexible rules. The physical therapists and nurses give direct orders and expect compliance, while the physician represents authority. The common physical situations that people with impairments share unite them, while others guide their daily routine and teach them the necessary information to survive as a person with a disability. 27
During the liminal phase the person is allowed to wonder about the meaning of existence. Many debates have occurred over the ethics surrounding euthanasia for people with disabilities, 29 indicating that the liminal phase of disability is a phase that society recognizes as appropriate for wondering about the meaning and futility of life. The transition to being a person with a disability is a time for digesting the impact of the events and examining the deeper meanings of life for the individual and family. 30,31
Two studies were found that approached the study of disability as a rite of passage. In an ethnographic study of persons with paraplegia and quadriplegia in a New York metropolitan area, Murphy and colleagues 27 described the liminal state for persons with disabilities. The life of the disabled person was described as indeterminate with no specific state for the person or the family to embrace. The wheelchair was a symbol of impairment, but the person was no longer sick; they could no longer occupy that role. They were in a perpetual state of ambiguity that was characterized by physical isolation and poor communication. 27
The second study was a grounded theory study of cancer survivors. Little and colleagues 24 argued that persons with chronic illnesses remain in a liminal state without a transition and become permanently marginalized by the culture. The chronically ill were tied to the medical model through use of terms, such as remission, 32 that were used to convey a sense that the state will never improve; it would worsen if the disease was left unchecked. People continued to report narratives consistent with the liminal period long after the acute phase of the illness. 24
Building upon the works of Murphy, 1 Murphy and colleagues, 27 and Little and colleagues, 24 the authors propose that persons with disabilities should be understood within their culture as moving through the rites of passage and beyond the liminal state. The previous work was limited because it did not advance the understanding of disability culture beyond the liminal phase. While people with disabilities may stay in a liminal state indefinitely, 1,24 they may also advance out of the liminal phase.
The transition out of the liminal phase is marked by a transformation into a new status within the culture, 22,23 which may occur after a battle has been fought and won. For example, cancer must be defeated; the person must fight to walk again and must follow the doctor's orders. This liminal phase, characterized by a fight over an enemy, is over when the person has won a battle. People win when they are free of disease, which is a state of independence from impairment. The person then re-enters into a position of higher status, as one who has beaten the enemy. Lance Armstrong, the cyclist, is an example of a person who went through this transition when he beat cancer. He not only won the Tour de France, but also won the battle against cancer. This was a physical battle fought to win an opposition to impending impairment.
Some people are left with residual impairments and cannot leave the liminal phase. The residual impairments indicate that they are not winners against their disease; this leaves them to hide their impairment. For example, during the 1950s some polio survivors overcame paralysis in order to reenter society; however, many were left trying to hide their impairments, which would have placed them back into a liminal state if discovered. These people may be labeled as passers for trying to hide their impairment from the dominant culture. 32
Existential battles can also be fought and won in response to impairment. These may result in psychological growth. For some persons with impairments, the enemy is not the body or the disease. It is the attitudinal barriers that marginalize the person with the disability. This process is often communicated in narrative form, a story of mental triumph over disease after the individuals experienced social or psychological difficulties in adjusting to their bodies. In an analysis of the stories of persons with multiple sclerosis, Monks and Frankenberg 33 found that illness narratives begin with accounts of how the diagnosis disrupted the taken-for-granted meanings that accompany being an able-bodied person. The narratives would change to stories of dealing with the illness, treatment, or the body after a key exacerbation places the person in a reflective state. This results in the body and the self coming closer together—a time of acceptance of the new body. The person often discusses how the physical disease brought them mental and spiritual growth.
The liminal phase may also be left when a person enters into a disability culture. There may be a disability culture within certain local areas that help the person to view their impairment in a positive light. During this time, a new meaning for physical, cognitive, and emotional changes are provided that allows the person to become a member of a disability culture. This group shares strategies for existing and becoming a self-satisfied member of society.
In summary, persons with disabilities face four options after they begin the rites of passage. First, if they interact with other people with disabilities who support, understand, and embrace their impairment, they may enter into a disability culture. Disability cultures exist within local areas that have perpetuated the rituals and values supportive of persons with disabilities. Second, they may re-enter the culture of origin as winners of their battle with impairment. Third, they may hide their impairments in order to re-enter their culture of origin. Their final option is to continue their existence in the liminal phase.
Kleinman 34 provided the reason that measures should be taken to understand a disability culture. In his study of the Taiwanese health care system with cross-comparisons to the Western system of health care, he described how the popular, folk, and professional sectors combined to influence the choices, decisions, beliefs, roles, and relationships of those seeking health care. Kleinman 34 recognized that health care providers were resistant to accept the explanations of others for the conditions they were treating, which led to an inability to understand and treat people within their culture. The misunderstanding of disability culture may lead to similar barriers in the care of persons with disabilities.
Health care providers and researchers should understand that a person's position within a culture might be changed because of impairment. The person may not experience the same interactions and hold the same values as before he or she became a person with a disability. Assuming that the body should be changed to resemble bodies without disabilities is not always a culturally appropriate assumption. This response was seen in the deaf culture when confronted with cochlear implants, which were designed to help persons who are deaf to hear. Some persons who were deaf and used American Sign Language to communicate felt they had no physical disability and did not need an implant. Their physical bodies were not impaired and did not need to be fixed. The cochlear implant was offensive to those who felt the device was a misunderstanding of deaf culture. 18 If a person with an impairment has entered into a supportive disability culture, health care provider interventions should be tailored to support that person within their culture.
Grounding the understanding of disability within a local culture may lessen the confusion that arises when practitioners try to treat a person with a disability based upon disease instead of their experience within their culture. Health care researchers could assist practitioners by providing studies of disability cultures. This could be done by using ethnographic research methods to capture the cultural meanings experienced by those living with disabilities. The goal should be to understand how groups of people make cultural meaning out of impairment and how these may or may not lead to barriers to health.
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© 2004 Lippincott Williams & Wilkins, Inc.