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The process of body appropriation among the disabled

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Title:
The process of body appropriation among the disabled
Creator:
Bronson, Julie Marie
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Language:
English
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vii, 146 leaves : ; 29 cm.

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Subjects / Keywords:
People with disabilities -- Rehabilitation ( lcsh )
Body image ( lcsh )
Body image ( fast )
People with disabilities -- Rehabilitation ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Thesis:
Thesis (M.A.)--University of Colorado at Denver, 1994.
Bibliography:
Includes bibliographical references (leaves [126]-146).
General Note:
Submitted in partial fulfillment of the requirements for the degree, Master of Arts, Anthropology.
General Note:
Department of Anthropology
Statement of Responsibility:
by Julie Marie Bronson.

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University of Colorado Denver
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All applicable rights reserved by the source institution and holding location.
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31250688 ( OCLC )
ocm31250688

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THE PROCESS OF BODY APPROPRIATION AMONG THE DISABLED by Julie Marie Bronson Ferris State College, 1977 A thesis submitted to the Faculty of the Graduate School of the University of Colorado at Denver in partial fulfillment of the requirements for the degree of Master of Arts Anthropology 1994

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This thesis for the Master of Arts degree by Julie Marie Bronson has been approved for the Department of Anthropology

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Bronson, Julie Marie (M.A., Anthropology) The Process of Body Appropriation among the Disabled Thesis directed by Associate Professor Craig Robert Janes ABSTRACT This thesis evolved from a personal interest in the abrupt transformation in appearance that occurs among the disabled. Such an event involves the disruption of the individual's body image. This thesis examines the process by which the individual is able to recover from such a abrupt change in physical appearance. Since the body is both anatomically and culturally determined, this transformation from a relatively "standard" physical state to one more marginal calls into question previously held cultural understandings about the body. Unless the disabled are able to 11appropriate11 their new physical appearance into a positive self image "recovery" remains incomplete. By recovery I mean the ability of the individual to contain the negative effects of impairment and accept their more marginal physique as non-devaluating. This abstract accurately represents candidate's thesis. I recommend its Signed the

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ACKNOWLEDGMENT I would like to express my most sincere thanks to my committee without whose academic counsel, and support, l this theses would not have been possible. I would also like to thank all the people and organizations that gave their assistance to this project. First Ms. Jeanne Elliott who allowed me access to all the available resources at the Denver Center for Independent Living including its wonderful staff whose support has been ongoing. A special thanks to the Conrads, Galen and Jasmine whose work has been an inspiration to watch. Second to Ms. Lynn Finer Karlson of the Lupus Foundation, who from the beginning encouraged me to pursue this project. A very sincere thanks to Mr. Fred Frech at Craig Hospital for he's time and guidance. Finally, I wish to express my appreciation to my family in particular my brother Karl the original inspiration for this subject.

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CONTENTS CHAPTER I INTRODUCTION .... G 1 Public Image ...................... D 3 Shared Understandings ... 5 The Disabled as a Group a 8 Socio-cultural Understandings 11 II. DESACRALIZATION OF THE BODY 18 Cultural Views of the Body 22 Body Appropriation ... 24 III. FORMATION OF SELF .. 27 Self Concept and Attractiveness 28 Principle of Integration 31 Self-Image and Self-Esteem 33 IV. IMAGES OF THE BODY 37 v. Central and Peripheral Theories .... 38 Body Schema . . . . . . . . . . . . 41 Body Image 0 g 0 43 THEORIES OF DISABILITY . . . . . . . 53 Implicit Theories .... 53 Motivational Theories .. 55 Psychoanalytic Theory .. 56 Body Image Theory .. 58

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Anthropological and Sociological Theories oo 59 Intergrative Theories m 61 Behavioral Theories ... 62 VI. ROLE THEORY am 66 Role of the Disabled m 70 Socialization and Disability oo 75 VII. ATTITUDES AND BELIEFS 81 Sources of Negative Attitudes . 83 Sociocultural Sources 84 Affective-Cognitive . 85 Conscious-Unconscious Sources 86 Past Experiences-Present situation ................... 86 Internally Originated-Externally Originated .................... 87 Theoretically Based-Empirically studied Sources 88 Attitudes Among the Disabled 90 Attitudes Cross CUlturally . 92 VIII. THE SOCIOLOGY OF SPOILED IDENTITY 95 Spoiled Identity m 96 Labeling . . . . . . . . . . . . . 99 Social Control m 103 vi

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IX. STRATEGIES FOR ADJUSTMENT 107 Adjustment to Loss . 109 stages of Adjustment 113 X. CONCLUSIONS 120 REFERENCE LIST 126 vii

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CHAPTER I INTRODUCTION Social theorists have been aware for a long time that the body is not only anatomically but culturally determined (Cash and Pruzinsky 1990; Kasulis, Ames, and Dissanayake 1993). As a result, individual understandings of the body and what it represents, reflect the cultural and cosmological beliefs of a groupo This thesis examines the body and its representations in a particular group, the physically disabled. My interest is in the 11body images" held by those who are physically impaired. The term 11body image11 is used freely throughout this examination. It originated with Paul Schilder (1935) one of the first to undertake an analysis of the body's experiences outside of a restricted neurological focus. This was done in an attempt to broaden previous understandings by combining biological, psychological, social and cultural elements into an analysis of physique. Theorists insist that this type of framework brings into focus important cultural influences (Fisher 1986; Cash & Pruzinsky 1990). Body image as an expression however has become problematic in that it carries different meanings within the various disciplines. Presently the term implies different representations with no singular definition

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able to capture its complexity. Throughout this thesis I employ the more general usage presented by Cash and Pruzinsky (1990) who define 11body image11 as any and all experiences affecting the body as a whole. Others argue that a more inclusive expression like 11body experience11 better recognizes this multi-dimensionality of the body (Lipowski 1977; Cash 1990a; Fisher 1990). This examination utilizes the more widely used term 11body image" but acknowledges the admonition by others that "body experience" is more accuratea As a care provider for someone who has suffered a spinal cord injury, I have had contact with the disabled community for over a decade. This community is one of the largest minority groups in the u.s. and recent data shows that people living outside of institutions with motion limitations or a long term reduction in activity makeup approximately 14% of the population. It was an interest in the abrupt transformation of the body's image resulting from spinal cord injuries that first started me thinking about the body and what is represented by it. I wanted to understand the recovery process following such a severe dis-ordering of physical appearance. 2

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Public Image It became apparent early in this analysis that the individual is the primary interpreter of personal imageo Ultimately, the individual must decide what the body will represent and whether or not it is something to be rejected or embraced. But society plays an important role in guiding this interpretation. For most, our physical appearance creates an opportunity for developing a positive personal and cultural identity. This identity is built collectively out of the relationships we maintain with family, peers and community. Others, as represented by the disabled find this to be a more burdensome tasko Individuals finding themselves abruptly and permanently excluded from achieving the ideal body image, find the re-construction of a personal identity very painfulm For them this abrupt transformation from a relatively normal0 physical state to one more marginal calls into question previously held cultural understandings of identity, person-hood, and self worth. The disabled individual realizes that in order to maintain a successful and positive self image there must be a re-examination of the cultural and personal beliefs previously held. Otherwise, attempting to appropriate what the culture has defined negatively (disability) will 3

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be met with considerable resistance. In order to understand the conflict that accompanies this process of re-evaluation we must examine the differences in shared understandings that exist within this group and the culture at large. The individual is forced to contend with a disordered appearance in a society that has set standards of health and beauty difficult to achieve even for the non-impaired. At this point it becomes clear that disability is not only an impairment of the motor functions of the individual, but also of the individual's behavioral and social abilities (Battle 1974). Studies show that social attitudes and expectations are crucial to the overall health of any individual. This is particularly true of the disabled (Roehrer 1961: Centers & Centers 1963: Yamamato 1971). The generally negative depiction of this community in print and the electronic media has contributed to their image of a marginal group. Weinberg and Santana (1978) reviewed 290 comic book characters and found 63 of the characters were represented as physically deformed. From that group over half (57%) were characterized as evil. This was in contrast to the 20% considered evil among non-disabled characters. Such characterizations contribute to the prejudices held of the disabled as socially in-valid and 4

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non-productive. Upon closer examination this portrait of the disabled as unproductive is more often a function of the cultural stereotypes perpetuated rather than any real constraints posed by the actual disabling condition. Such stigmatization inevitably and seriously affects the life choices made available to this community. Subsequently, I am concerned with the social and psychological consequences of disability, particularly in regards to its effect on relationships with the larger abled-bodied community. Understandings between these two groups form the basis for their interaction. In an examination of the theories on disability, stigma, socialization and role formation I explore ways to increase the interaction between the two groups. Shared Understandings The way in which we interact with each other depends in part on how we define ourselves, which in turn impacts how others see us. No single individual is given complete control over this process. How individuals define themselves ultimately stems from cultural expectations existing between the individual and the larger community. Our expectations arise out of the perceptions we have of each other. such perceptions are the result of the cultural interplay between the group 5

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and the individual and provide the guidelines for both individual and group behavior (Swartz and Jordan 1980). These rules of interaction are easily observed. The shared understandings between abled-bodied and the disabled directly effect their comprehension and treatment of each other, influencing the ways in which they arrange and structure their personal experiences. Studies show that the individual's physical appearance is integral to this social interaction and a fundamental source of the non-verbal information that flows between people in any interactive setting. As individuals we continually rate and compare ourselves to others. This might explain why cross culturally the tolerance level for substantial deviations in appearance remain low. Descriptions like small, tall, heavy, attractive, etc. contribute to our sense of identity and set the parameters for public performance. Our public image is one we are able to either accept and appropriate into a personal identity or, like the newly impaired, find ourselves rejecting. The appearance of the disabled violates a basic social norm regarding a healthy body. The physiologically 11normal11 majority uses their cultural dominance upheld by the sheer size of their membership, to set the physical standard for physique. Their demand for conformity can be compelling. 6

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The majority standard in no way resembles the atypical form of the disabled. Since those individuals of the majority retain the position to dictate standards, they hold greater influence on the formation and regulation of relationships. This kind of leverage results in severe consequences for the disabled. Feeling their public image is outside of their control they find it difficult to integrate easily into the surrounding social environment. Physical appearance of the disabled can deviate substantially from cultural standards. Frequently the whole individual is devalued for this departure even though his position is an involuntary one. As a direct result of this devaluation the individual often comes to be regarded as deviant (Goffman 1963; Birenbaum 1975). An inability to physically conform and the culture's demand for uniformity keeps the individual in a permanent state of deviancy. In order to reject this spoiled identity and recover self worth, particular labels and attitudes codified in the culture must be rejected by the impaired person. One focus throughout this examination is the underlying assumption of normality" and its effect on the balance of power between groups. 7

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The Disabled as a Group There are numerous groups in every society and each of us are affiliated with several at any one time. Classifications range from large regional sub-divisions such as 'southerner' to smaller and even more temporary groupings such as 'businessmen' or 'anthropologist'o The most well known subgroups are the various racial, ethnic, and class categories. These groups are characterized by their broad, normative cultural differences from the majority culture. By norms I refer to the routine and agreed upon behavior exhibited by the individual on a daily basis. Specifically, patterns of dress, social etiquette, language usage, etc. These norms are designed to regulate and govern the individual so that behavior appears similar throughout the culture. Among these large cultural categories are smaller groupings which vary slightly from the dominant norms. Such groups are often referred to as subcultures. They enact normative systems that may differ in language patterns, values, and styles of life from the larger culture, of which the individual is also a membero Some have suggested that these subcultures have emerged in response to unique conditions in a group's surroundings. John Gillen (1955) argues that every culture in part is a set of customary adaptations to the natural environment 8

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and available resources. He states that subcultures exist because they provide viable responses to various conditions and problems the majority culture either has not or cannot provide solutions for. This idea of subculture as a 11response" is not unique among social scientists (Lewis 1961: Gans 1962: Spergel 1966} each subculture is an organized set of related responses that has developed out of people's efforts to cope with the opportunities, incentives, and rewards, as well as the deprivations, prohibitions, and pressures which the natural environment and society-that complex of coexisting and competing subcultures-offer to them (Gans 1962:249} The most significant role played by sub-cultures is their ability to regulate activity in the same way norms and values regulate behavior in the majority culture (Arnold 1970}. The individual's immediate proximity, coupled with their daily interaction, is sufficient for reinforcing the slightly different normative systems. At one end of the continuum we can have sub-cultures which share few elements with the larger culture while at the other extreme there exist those sub-cultures that differ in no way significantly from the majority. Affiliation with these smaller groups contributes as much to the individual's personal and cultural identity as does their membership in the larger culture. While normative conflicts are inherent to any social 9

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structure, many of the role and behavior conflicts experienced by members of the disabled community are the result of "enforced deviance.'' Their deviancy is due primarily to their violation of norms pertaining to physical well being and wholeness. They do not fit the normative expectations of the society. SafiliosRothchild (1970) contends that this is not due to their being "intrinsically deviant because of their disability, but because those around them label them 'deviant' since they impute to them an undesirable difference". This tendency by the majority to label as deviant individuals who violate established social norms is strong. The disabled, like any other marginalized group, experience the same rigidity of interaction in their relationship with the majority culture. Attitudes directed towards them parallel those displayed toward other racial minorities (Barker et al. 1953) This results in their experiencing some of the same negative reactions of these other groups who have also been assigned a devalued status. Similarly, the disabled are relegated to the same position of isolation and segregation (Wright 1960; Safilios-Rothchild 1968). That this thesis takes to examine the disabled population within the context of a sub-culture is not surprising seeing as research shows the formation of 10

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subcultures enables the individual to better manage their difference, in this case disability (Clinard 1963). Like any other sub-culture the disabled have been forced to adopt strategies that address specific problems in their physical and social environment. The biggest of which is their devalued status. Socio-cultural Understandings Public and private attitudes toward the disabled profoundly affect their perception of self. The stigmatization accompanying a body image altered by disease or trauma creates an environment that can be extremely restrictive. As a group the disabled are forced to maneuver around numerous physical and social barriers. The stigmatization is almost impossible to change because those responsible for it (i.e., the majority) often receive something of value from the process. Eisenberg (1982) contends that the disabled serve a useful purpose in society by helping the ablebodied individual feel healthy and superior and thus more competent. Anthropologists have been interested in the relationship between the body and society for some time. Chapter II looks at the ways in which western concepts have.influenced our ideas on the body. Jantzen (1981) 11

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believes every culture offers an ideal of health that can be applied metaphorically to the body. A discussion of what the disabled body represents in society provides clues to the various conflicts played out between the individual and society. While every culture shows variation in individual behavior, the common experiences of childhood provide much of the similarities in the motivation and restraints we observe in behavior (Swartz and Jordan 1980). Chapter III looks at some of these shared understandings and its impact on self concept. Obviously, there is great similarity between the disabled and able-bodied communities. We find that as children our relationships are first formed using a framework heavily influenced by individual perceptions as to the body's role (Fisher 1986). Our initial bonds with others revolve around issues of satisfaction, arousal, and inhibition of feeling. Some of our earliest judgements about the social situation are derived from these early body experiences. For example what was good, bad, or pleasing can be traced to the initial relationship between child and caretaker. Fisher (1986) argues that the individual uses information gathered from these early nonverbal contacts to determine whether or not individual social participation is to be pursued or avoided. He insists 12

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that eventually researchers will be able to make the correlation between current decisions of the individual and these earlier 11coded messages" from infancyo In Chapter IV I look at ways in which the individual views and assigns meaning to the body. Our first awareness of self is as a body, an object appraised by others as well as self. This section concentrates on the ability of the body to process both physical and social stimuli, in an effort by the individual to form a personal body image. I also review some of the integrative themes that have emerged out of the past two decades in body image research. Chapter V provides an historical evaluation of psychological theories of disabilityD These theories give some insight into the cultural understanding of the mental workings and personality constructs of the disabled. Some of these theories explain the psychological adjustments of the individual in terms of social and environmental influences. Others are more interested in the effect of the clinical setting, focusing on the function of rehabilitation in the process of adjustment. Chapter VI is a more generalized analysis of role theory and its application in the normalization and integration of the disabled in society. The section 13

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looks at the transition between earlier roles and the changes that occur after impairment. Talcott Parsons' (1951) ideas on illness and its relevance to deviancy underscore the difficulty the disabled have in adjusting. Beliefs about illness and agreements between the individual and society help us better understand the position of the chronically impaired persono I also take into account Edwin Thomas's (1966) notion of "role strain", which is described as that discord which occurs whenever an individual attempts to reconcile two conflicting sets of expectations within the same role. Chapter VII summarizes the literature on prejudice, deviance and stigmatization and applies it to disability. An examination of stigma finds that it provides society with a simple means of classification that can be applied uniformly to any situation marked by deviance. Once a condition has been defined as deviant by the society, mechanisms for control are activated. The ideology behind many of the social agencies which have been sanctioned by the society has resulted in the management of substantial segments of the population. These agencies are given considerable power to define what is and is not deviant. Of interest are similarities between the methods of control for voluntary (criminal) and involuntary (disability) deviance. 14

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Surprisingly, the disabled acquiesce to much of their own depreciation of self, attesting to the strong effect of prejudice. These attitudes prove to be an effective method of control in and of themselves. Chapter VIII looks at the various sources within the society that generate such attitudes. These attitudinal sources range from those the observer is fully aware of to those which are relatively unconscious. By examining these sources we get a clearer understanding of how stereotypes are generated and maintainedD Chapter IX looks at adjustment and adaptation to loss. Often successful adaptation involves not only a broadening of one's original values in life, but an increased ability to balance the demands of disability with individual daily requirements. Finding a balance enables the individual to participate in the culture more fully. Thus ways in which individuals are obstructed are central to any discussion of adaptation. The disabled face serious social barriers that negatively impact participation, often complicating their adjustment to loss. We all possess bodies and have to some extent been defined by them. But the impaired physicality of the disabled individual has the effect of restructuring their social reality. In the final section (Chapter X) I 15

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discuss this shift in reality and the effect it can have on ones' choices in life. The isolation from society experienced by this community has taken its toll. As alluded to earlier it is the social barriers which marginalized this group more than the physical reality of their limitation. They often find themselves forced into a position of what Zola (1982) describes as "social invalidation"g This state of invalidation is fostered by the majority culture in an effort to make the disabled less threatening as a group, essentially negating their membership in the culture as equal and competent constituents. Fortunately, through a new social movement for independent living, this community is discovering new ways of breaking the bonds of social control that restrict their daily lives. This new advocacy position has been modeled after the earlier civil rights movements of women and blacks and is resulting in the same consciousness raising among the public. In an effort to facilitate demands for greater and more equal participation, their activities have centered around pushing for legislation that increases services and benefits to their community. As a result there is no reason to believe these efforts will not culminate in some of the same positive gains of other stigmatized 16

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groups, where being disabled will no longer imply the automatic acceptance of a spoiled identityD 17

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CHAPTER 11 DESACRALIZATION OF THE BODY Group cultural beliefs are always reflected in the social system, and these beliefs are particularly visible within the medical system. Without this thorough comprehension of the culture's schemata on the body, Nagatomo (1992) contends it is impossible to comprehend the strict physicality of western medicine. Until the seventeenth century no one questioned Christianity's position that science and religion were separate disciplines. The religious realm centered around man and his spirituality with the church tolerating no interference from lay personnel in matters it considered within its own jurisdiction. Requests for examining the physicality of man were rejected based upon the belief that the soul resided in the body. Any dissection of the body was viewed as intrusive and demanded justification. This dilemma was eventually circumvented by the philosopher Descartes through his treatise in 1644, Heditationes de prima which argued for the separation of mind and matter. Descartes furnished the means by which unfettered inquiries into the physicality of man could be made. He asserted that the soul was a "thinking11 being, without spatial characteristics

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allowing the self to exist independently from the body. This argument helped to release scientific inquiries from the restrictive conditions previously set down by church doctrine. Science had been freed from theology. His treatise help to separate the issue of spirit from the ordinary physical concerns of the individual. Man's spirituality now dealt with matters involving the soul or the mind, not the body. This 11desacralization" set the stage for the western duality of mind and body that followed later. From the beginning the mind was assumed to be of primary value compared to man's physicality. Social theorists often dwelt on the idea of the body as subservient, and displayed almost an indifference to its physical role (Durkheim 1961; Mead 1962). Often the body was represented as merely a machine. This is a uniquely western idea traced to this legacy of Christianity and seventeenth century mechanistic science. One of the implications of adopting such a view was the infiltration of engineering terms such as stress" into discussions of body functions (Kugelmann 1992). Dissanayake (1993) argues that the resulting marginalization of the body was due not only to the legacy of Christianity and mechanistic science, but also to a rejection of biological determinism. In the 19

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nineteenth century there were new attempts at explaining the nature of human interaction through biology. As biologism became more prominent, modern social theorists countered with a new sociological determinism. This neglect of the body in favor of society operated at both the macro and micro levels according to Dissanayake. Rejected at the micro level because the individual was seen as "a social agent socially constructed", and at the macro level, when theorists gave all their attention to the social system. Western social theorists have maintained that human beings have bodies and therefore are a part of nature; they have minds and therefore are a part of society. The way in which many social theorists have sought to approach this problem is by maintaining that as rational beings, men are called upon to enter into various contracts with society. This means that in the interest of society they have to give up certain natural rights and submit to the authority of prevailing social norms. The net result is that the body is always placed in an ancillary position to the mind. (Dissanayake 1993:22) Bryan Turner (1984) observes that even as philosophers rejected the duality, sociologists did not. This ambivalence regarding the body is reflected in many of the writings of social theorists. This Designation of the body as subordinate to the mind marginalized its role from the beginning. Like a machine, the human body was viewed as an object that could be divided into several different parts, with each component vulnerable to 20

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disrepair. Western physicians saw disease as a localized condition of the body. If a particular part was injured then that area only was targeted for treatment. This had the effect of reducing the body to another apparatus for examination. While embodiment is a central theme in social existence, the position of the body in .social theory was relegated to minor status. Theorists such as Weber (1949,1950,1968), Parsons (1942,1964) and Durkheim (1961) de-emphasized the biological aspects of human interaction. Interactionists like G. H. Mead (1962) viewed the self "as a symbolically constructed phenomenon" that resulted from interactions with others. He determined that this self was fundamentally social rather than Like others, absent from much of his writings was any recognition of the somatically felt body, the one feeling anger, joy, and despair. Dissanayake (1993) contends these tactile abilities were ignored because western science had no way of objectifying such emotions in any discussion. It was a deficiency that added to the duality of Western perspective. John O'Neill (1985) argues that future interests in the human body by social theorists must incorporate "the complex relationship between persons, nature and social institutions. Only then can a more 21

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comprehensive picture emerge as to the integrative relationship between self and body. Cultural Views of the Body Until recently anthropologists have not attempted to incorporate the body into social theory. Mary Douglas (1966, 1986) was one of the earliest showing an interest in the biological and somatic underpinnings of man's social construction of reality. She argues that the interaction of body and society gives valuable insight not only into the social life of the culture, but also into basic attitudes held about "spirit and matter." She reasons that a greater emphasis on the body would help to unlocking the symbolic codes and meaning behind various social structures. The social body constrains the way the physical body is perceived. The physical experience of the body, always modified by the social categories through which it is known, sustains a peculiar view of society. There is a continual exchange of meaning between the two kinds of bodily experience so that each reinforces the categories of the other. (Douglas 1986:65) By adopting a more integrative approach one is less likely to fall prey to the cartesian legacy. Such a perspective is particularly important in reviewing the various dimensions of illness. One of the consequences of western mind-body duality is its capacity to fracture the 22

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illness experience. In recognizing illness as a cultural experience anthropology is provided with a more comprehensive model from which to evaluate. The reductionist model used by western medicine tends to mask the social, cultural and political aspects of disease. Focusing on the body as a machine obscures the cultural and historical constructions of illness. Medical anthropologists have recognized this relationship between cultural beliefs and disease and argue this prevailing dichotomy between mind and body results in our misinterpretation of the disease process as it relates to the social, and political representation of the body. It is a form of communication-the language of the organs-through which nature, society and culture speak simultaneously. The individual body should be seen as the most immediate, the proximate terrain where social truths and social contradiction are played out, as well as a locus of personal and social resistance, creativity, and struggle. (Lock and Scheper-Hughes 1990:71) The point is crucial to the discussion of disability and body image. A reductionist perspective that separates the ills of the body from social, psychological and cultural factors distorts any conclusions made about the chronically impaired individual. Problems faced by the disabled are not only biotic but social and cultural in nature. Any restoration of body image by the disabled individual must address social and cultural barriers. 23

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Body Appropriation Merleau Panty (1962) asserts that the social world is the product of human interaction, and that individual interpretations of the environment are socially constructedo Like others, Panty saw the interplay between the body and society as essential to our understanding of its function. He recognized that at any one time the individual is regulating several different facets of his body, whether that of motility, spaciality or changes in size. Any or all of these aspects can be independent of one anothera Some of these experiences are observable by direct means, where as others are found to operate only at the subconscious levelo Panty observed that the individual's ability to monitor different stimuli included various perceptions about their appearance. Fisher (1986, 1990) found in his studies a divergence among men and women in modes of perception involving the body, although he argues this may be the result of differences in socialization rather than in any actual differences among the genders. Recent feminist writings tend to support Fisher's contention about socialization. An examination of the historical processes among institutions and power structures show 24

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them to be instrumental in the cultural constructions of body. In their discussions of the female body, issues of power, submission, marginalization and the social order lead feminists to conclude institutions cannot help but impact the personal construction of self identity (Oakley 1972: Mies 1986). They argue that beliefs held by women about their bodies and their effect on relationships demonstrate the importance of underlying social structures in the defining process. However most differences between individuals are believed to be merely a reflection of the body's "appropriation" processo This involves the incorporation of individual physical attributes into a larger image of It is a highly flexible process vulnerable to numerous changes and altercations throughout the individual's lifetimea Body appropriation begins in infancy and for the most part is unconscious. By means of the continued affirmation and integration of physicality the individual is allowed a sense of self fluid enough to accommodate the myriad of changes both positive and negative encountered throughout life. How the individual "appropriates" depends upon the cultural context, as it is affected by variables such as race, ethnicity, class, and gender. Obviously, disability profoundly effects "appropriation". 25

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The disabled individual understands that any recovery involves the re-integration of a dis-ordered physique into a new sense of self. The social and cultural barriers an individual faces takes on new significance when placed within the context of shared understandings about the body. Their ability to construct a new and positive self image depends in part on their awareness of these shared understandings about health, and beauty. After the next section on self formation we may be able to appreciate the disruption disability brings to this sense of self. 2,6

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CHAPTER III FORMATION OF SELF Since no one is born with a sense of self, the individual must learn to differentiate between themselves and others. This process of differentiation has been well documented in the new-born infant (Piaget 1926, 1932; Gesell and Ilg 1943; Sherif and Cantril 1947). Theorists contend that this self-schema includes the baby's own sensory experience as well as the attitudes, beliefs and ideas of others. All these aspects operate within a framework that allows the individual to integrate every experience. other key aspects in the development to adulthood would be age, sex, marital status, kinship, occupational role etc. It has been shown that perception of self functions as a frame of reference which mediates judgements of other persons, attitudes toward social issues, and the cognitive processing of all sorts of material. (Fisher 1986:637) This process of differentiation begins with a maturation of the nervous system and the accompanying recognition by the infant of its' surroundings. As distinctions are made, a sense of self emerges. This self-identification is accelerated through the recognition of unmet needs and their consequences. As

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self awareness increases so too the search for available means to fulfill those demands" This drive toward selfgratification propels the process of differentiation. During this time attitudes, ideas and feelings about the self begin to materialize. Wright (1960) defines this emerging self concept as a 11social looking glass11 through which ideas and feelings about the self surface. These body attitudes tend to reflect and are the result of the individual's interpersonal relationships. So ideas carried about the body, .what is good, bad, proper and improper are formed early. Attitudes in children toward the self have been found to connect positively with feelings they hold about their bodies. Speer (1969) found in adolescents a significantly positive correlation between selfacceptance and favorableness of feelings toward one's own physique. Similar results have also been found among adults. Such attitudes, whether conscious or unconscious, have a direct bearing on the individual's handling of change as well as his level of proficiency in adjusting to disabilityg Self Concept and Attractiveness While there are physical ideals of beauty in every culture, there are no universal standards. 28

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Attractiveness is defined differently in each culture and judged to provide its own rewards. Shontz (1975) found that the admiration of others for attractiveness has the effect of controlling behavior towards the attractive individual. The attractive person knows people will respond in predictable ways and as a result physical attributes are used as a means to further personal ends. Various examinations have upheld the persistent belief that attractive people are judged to have a more positive self concept than unattractive persons. Several empirical studies attest to this advantage of attractive over unattractive individuals (Cash 1981, 1985; Noles, Cash and Winstead 1985; Hatfield and Sprecher 1986; Burns and Farina 1990) Equally supported by studies were the higher levels of anxiety and rejection among the unattractive than the attractive individual (Cash and Begley 1976; Cash and Burns 1977; Abbott and Sebastian 1981). Other studies report findings indicating physically unattractive subjects experience higher vulnerability to psychological disorders involving interpersonal conflict and anxiety (O'Grady 1982; Cash 1985). While there are many studies to suggest that the self esteem of the disabled individual is negatively affected by his appearance, this does not mean methods do not exist that compensate for the disadvantage. 29

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Schilder (1935) contends that disfigurement or disability presents a direct threat to society's idealized image of the body. He argues that merely seeing the disabled individual creates feelings of disquiet among the able-bodied; an linease born of the viewer's own unconscious and somatic body image11 being challenged (Menninger 1949). He contends that disability symbolizes that which is diseased, repulsive and unhealthy. As a reminder of our own mortality, literally and symbolically, Bakan (1968) theorizes that these reactions may be due to the able-bodied community equating a loss of body part or physical function with the death of a part that at one time was central to the individual's identity. Several analyses compare these reactions with many of the same feelings, generally reserved for those dying or dead (Parkes 1975; Enders 1979; Livneh 1980). Such attitudes obviously impact the disabled, but it is not clear how; particularly since the appearance of a positive correlation between self-concept and body image tend to disappear in individuals suffering disfigurement or disability (Wright 1960; Fisher 1986; Cash and Pruzinsky 1990). This lack of correlation may be explained by the nature of the integration process. 30

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Principle of Integration Initial reaction to impairment may be maladaptive, but if the disabled individual is to eventually accept a new self identity he must initiate and accept a series of value changes. This is accomplished by either adopting new ones or revising and expanding old values he holds about himself. This can only be accomplished after the disabled individual comes to terms with his new physical deviation and realistically assesses the personal and social impact it will have on his transition back into society. Since beliefs and attitudes are not formed or gathered indiscriminately, the disabled individual must make a conscious choice as to which self-attributes he will collect and incorporate, synthesizing the old with the new. The ability to incorporate new attributes pleasant or unpleasant so that it does not significantly change the existing self concept is explained by the "principle of integration.11 Subjectively, the person may feel a strangeness about himself, a kind of unfamiliarity, and more extremely he may feel like a different person. Ordinarily, however, he still recognizes himself as the same person in spite of remarkable changes. The property of integration, which requires that the new feelings and notions about the self be absorbed within the old ones, makes possible the feeling of continuity between the past and the present in a life history. It is this property 31

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which cautions us against the generalization that a physical trauma, even a major one must create a violent upheaval in the self concept. (Wright 1960:153-54) In one study on life satisfaction, researchers (Neugarten, Havighurst, and Tobin 1968) found that among the elderly experiencing loss and grief, those rated highest in life satisfaction were often found to be those most open to change. The study revealed that individuals with "integrated" personalities appeared more open to the many variations that occur in life and less likely to fight against change. When faced with barriers or loss this group tended to make realistic assessments about their situation and adjusted by readily substituting new behavior in place of the old. As a result self esteem remained high. Those individuals who resisted change by becoming preoccupied with their loss were labeled as armored-defended". This group tended to rate lower on the life satisfaction scale due to an inability to restructure their lives to the same extent as the "integrated" group. This study provides clues as to which individuals would have an easier time making the transition from able-bodied to disabled. The principle of integration was also demonstrated in a study done by Haire and Grunes (1950) where college students given a list of traits attributed to factory 32

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workers, were asked to impart an impression. They found that ascribing the trait of 11intelligent" to factory workers disturbed most students. Their established belief systems found it difficult to reconcile such a trait with factory workers. As a result most students either ignored the trait, modified its definition or were forced to reorganize their beliefs about factory workers. one asset of the of the integration process is its ability to minimize the level of disruption in a belief system thereby assisting the individual in maintaining a sense of equilibrium (Goldstein 1939; Lecky 1945). Self-image and Self-esteem Each of us holds a view of ourselves involving a judgement of our physical and mental abilities. This self picture becomes the mirror by which the individual along with significant others decide individual self wortha How the individual feels about himself in relationship to how he believes others feel about him will attest to this level of self esteem. Ones' level of esteem rests not only on ones' own evaluation of self, but on other factors such as physique, character, personal accomplishments, and intimate relationships formed with others. Exactly which personality traits are important varies from one individual to the next, but 33

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those considered most important by the individual are referred to as the 11core11 dimension (Coughlan 1988). Categories within the 11core dimension11 tend to be bipolar and include such traits as attractive-unattractive, strong-weak, interesting-dull, etc. Most of us have a positive self-esteem regardless of our awareness of traits we wish to change. In general however, the consequence of abrupt disability upon the individual is a spontaneous de-evaluation of ones' intrinsic worth. Esteem is lowered particularly if the individual affected previously held a concept strongly negative of the disabledo However even if the individual held no strong opinions about disability they still experience an altered self-image. The extent to which self esteem is affected depends on whether or not the disability involves attributes associated with the individual's 11core11 dimension it is an idiosyncratic matter as to which physical and cognitive attributes contribute most to a person's sense of worth, and so individuals will vary as to how any particular disability affects the self image and self esteem. For example, if a person places high value on verbal skills because they imply for him cleverness, competence and strength, then a mild dysphasia, causing hesitancy in speech and occasional muddling of words, will give rise to feelings of stupidity, incompetence and weakness, and may cause him more distress than the loss of the use of a hand. (Coughlin 1988:41) 34

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studies show that with the able-bodied, self esteem correlates highly with body esteema The disabled however, were found to 11exclude the negative body elements from their overall evaluations of self and therefore isolate them" (Fisher 1986). By restructuring their list of core values to exclude physical appearance the disabled are able to mitigate some of the damaging effects on self esteem. Sometimes significant others help in this restructuring of core values by the disabled. Researchers found considerable encouragement by family members of the disabled to ignore or deny their physical appearance, and instead to place renewed emphasis on intellectual or social skills as a way of compensating for the loss. Sometimes the effect of the disability is more indirect. Physical and cognitive attributes may work to only "interrupt" another attribute which indirectly effects a 11core11 trait. For example since male athletes often associate their prowess with masculinity, their loss of mobility is then seen to interfere with their beliefs about maleness. This often leads indirectly to a loss in self esteem. Their esteem is attacked also because impairment automatically disrupts any aspirations the individual has towards fulfilling their goal of being an athlete. 35

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While low self esteem is not an exclusive condition of the disabled, they are consistently forced to confront this aspect as a consequence of their physical impairment. Often this group finds themselves having to either give up or modify specific goals and aspirations as a direct result of their limitations. These issues of self esteem are central to any attempts at recovery. Disabled individuals in an attempt to obtain favorable judgement for compensation, or obtain public benefits, are often forced to attest to their stigmatized role. By emphasizing their impairment the individual is placed in the unfortunate position of legitimizing their own devaluement. In fact, Blood and Blood (1982) found that disabled individuals who acknowledged their impairment and demonstrated self acceptance by their willingness to discuss their limitations with others, were viewed more positively by the public than those who refused. Individuals who refused were seen less sympathetically by the public under the belief they had not realistically assessed or accepted their predicament. 36

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CHAPTER IV IMAGES OF THE BODY Although self concept and body-image are not equivalent they are closely related. Wright (1960) described body image as that part of the self concept "absorbed in integrating attitudes and experiences about the body." The perceptions individuals hold about their bodies often are reflected in the feelings they hold about themselves (Wapner and Werner 1965). The fascination of the scientific community with distorted body-images had its inception with neurology. Early neurologists were fascinated with the phenomena and determined to locate the central control for such distortions. They were convinced that the brain was the controlling mechanism responsible for regulating normal patterns of perception and any disturbances were assumed to correlate with injury to the brain. This collection of patient accounts, assisted neurologists in categorizing numerous perception disorders. Little consideration was given at this point to psychological factors. Before discussing the concept of body image any further, however, we must examine its beginnings. Some of the earliest accounts of bizarre distortions in body

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perception come from the examinations of brain damaged patients. Physicians observed patients rejecting various parts of their body, in the belief that such body parts were foreign and belonged to someone else. Others refused to acknowledge paralytic parts, insisting no impairment existed. One of the more unusual experiences were patients suffering from "autopagnosia" an inability to distinguish the left and right sides of the body. The following excerpt by neurologist Paul Schilder (1935) describes one of these patients: Patients of this kind are helpless when they are asked to show parts of their own body. the patient first sought her left ear on the table. Only upon the repetition of the order did she grasp her left ear. She did not succeed in finding her left eye and finally said: 11I don't know, I must have lost it. When she was asked to show her hands, she tried to find them on the table and said: "nowhere, for heaven's sake; I have lost them, but they must be somewhere." But the orientation of right and left was also lost. She did not know if there was right or left on her own body. (Schilder 1935:40) Such accounts illustrate the fallibility of the body's system of perception. Central and Peripheral Theories One of the more common perceptual disorders were that of phantom limbs, notably high among amputees and spinal cord injuries. There had been descriptions of 38

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these occurrences in the medical literature dating back to the sixteenth century. It was neurologist WeirMitchell (1872) who coined the phase "phantom limb". He had been interested in learning the extent to which peripheral and central aspects of the nervous system determined perception and cognition in the body. Two camps rose out of the discussion concerning 'phantom' symptoms. Arguments arose as to whether or not they were the result of central or peripheral influences. Those subscribing to the peripheral theory believed the phenomenon to be the result of irritation and sensations arising out of the stump after surgery. Centralist on the other hand believe the phantom limb sensation to be the result of a cognitive system designed to maintain images of the body already in place before the loss of a limb. The peripheralists argued that the disruption of normal neural pathways from irritated nerve endings distorted individual tactile sensitivity due to the creation of scar tissue. They believed phantom sensations were simply the result of continued discharging of nerves which no longer served a useful purpose. Proponents of peripheral theory supported their argument with the observation that there were lower incidences of phantom limb occurring among young 39

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children. They also noted the slow disappearance of these symptoms generally occurring after the fitting of a prostheses. Challengers pointed out however the persistence of the phenomenon under spinal anesthesia. Weir-Mitchell recognized the role for peripheral influences but argued that there had to be a psychological aspect as well, as evidenced by the cases where 'phantom limbs' had failed to appear. Others agreed, feeling phantom experience also involved attempts by the individual to restore equilibrium to the body's image through an unconscious distortion in stimuli in an attempt to deny loss (Gueniot 1861; Charcot 1892). Pursuing an explanation for this phenomenon WeirMitchell sought out French neurologist Gueniot (1861) who had presented the idea of an 'elementary notion of the mutual distances of our organs in 'instinctive' operations of judgement. This idea insinuated an implicit knowledge of the body, obtained early in life. Gueniot argued that 'elementary notion' was required for any movement by the individual attempted without using sight and in an effort to perceive touched objects. Elementary notion provided a blueprint for regulating movement within a psychological framework. Influenced by both Weir-Mitchell and Gueniot, Charcot (1892) also argued for a psychological and 40

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cognitive aspect to phantom phenomena. He felt that the experience of movable phantom fingers in the absence of finger muscles and the experience of gross movement could not be explained simply by irritation of single nerveends in the stump. Like Weir-Mitchell and Gueniot he advocated a centralist view of perception. The landmark concepts of body schema and body image were yet to be envisioned. Full development of these ideas would come later but Weir-Mitchell, Gueniot and Charcot's early assumptions were considered the precursors. Simmel (1956) later lent credence to centralist theories. He found that if the missing part was never integrated into the individual's body image, (for example those born with missing parts or if body parts are gradually eliminated such as the absorption of digits in leprosy patients) there was no disruption in the body image of the individual. While central and peripheral theories are not mutually exclusive and both views have been sustained by several observations, most subscribe to centralist ideas. Body Schema Although neurologists Henry Head (1926) and Paul Schilder (1935) are credited with providing the foundation for subsequent discussions of body image, 41

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their ideas were merely the culmination of the many observations recorded by earlier neurologists. Head is generally given recognition for coining the term 'body schema.' Using the observations of others before him he attempted to explain how body perceptions were integrated. He argued that everyone builds a picture of himself comprising a standard by which body movements were reviewed and appraised. This was needed in order for the individual to move from one physical position to another in a coherent manner. This picture held by the individual of self was called the 'schema' and provided the model to appraise activity. Every recognizable change enters into consciousness already charged with its relation to something that has gone before, just as on a taximeter the distance is presented to us already transformed into shillings and pence. So the final products of the test for the appreciation of posture or passive movement rise into consciousness as a measured postural change. For this combined standard, against which all subsequent changes of posture are measured before they enter consciousness, we propose the word 11schema.11 By means of perpetual alterations in position we are always building up a postural model of ourselves which constantly changes. Every new posture of movement is recorded on this plastic schema, and the activity of the cortex brings every fresh group of sensations evoked by altered posture into relations with it. Immediate postural recognition follows as soon as the relation is complete. (Head 1926:605) 42

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Head concludes that postural recognition is largely unconscious. Our understanding of posture comes through our recognition of a current impulse and a resulting 'schema' from previous movements and postures. This 'schema' is not a visual image but a standard against which subsequent movements are made. It provides information to the individual about previous postures. It's a flexible model with the ability to constantly change. Head postulates that the destruction of this 'schema' makes it impossible to recognize the position or location of various body partsa Perception at this level gives the individual information about topographical stimuli on the body surface and about the arrangement and spatial alignment of the body. It is the 'schema' which dictates what is pleasurable and painful. Shontz (1990) points out that although it is influenced by learning it remains relatively stable over time and through various changes in an individual's psychological state. Body Image The term body image has come to signify any analysis dealing with how the individual views and assigns meaning to the body. There has been considerable confusion surrounding the difference between body schema and body Image. Both tend to overlap and then diverge from each 43

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other when used by different disciplines. Little attention has been given to any integration of terminology (Fisher 1990). Different disciplines working in isolation have made no attempt to cross reference or acknowledge work done by others. From the beginning, neurologists failed to clearly distinguish between the physiological and psychological aspects to their observations. Head had described in neurological terms., 'body schema,' but psychological interpretations often resulted in a meaning almost identical to that given by Schilder (1935) for body image, 'the picture of our own body which we form in our mind.' In its most common usage body image has come to signify a subconscious awareness of one's own body. This knowledge is used while moving in a room with things and people, without a focal awareness of the routes to take and of the dimensions of the body, and in scratching the right spot on the body. (Tiemersma 1989:1) Because of the overlap and inexplicit use of language, many remain skeptical that any effective usage of the terms body image and body schema are possible. There has been a marked decline in body image research since the 1960's directly attributed to the confusion surrounding application of terminology. Some challenged any further usage of such doctrines arguing that any real 44

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distinctions have been lost, and the concepts functionally unproductive (Poeck and Orgass 1971). Others have suggested that 'body image should be replaced with a more generic term such as 'body experience' (Lipowski 1977). As a result only in a few areas are scholars willing to concede that progress has been made in formulating useful theory which can be applied uniformly across disciplines. It is obvious from past research that from the beginning body image has been treated as a multi-faceted concept. The research has included several areas of focus: perception of and attitude toward one's appearance, body size, body spatial position, body boundaries, body competence and even gender related modes of perception towards the body. These studies have yielded valuable insight into individual perceptions, thoughts and feelings about the body experience. While individual beliefs are highly subjective and personal, this does not mean correlation exists between the subjective evaluations and physical realityD Often the individual's personal evaluation is more negative than actual reality. This is because feelings about self are assimilated into the individual's body image and how they perceive and experience the body affects their view of self. The infant's sense of self begins with its 45

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experience of tactile and kinesthetic sensations (Pruzinsky 1990)o Researchers find the child's ability to recognize himself in a mirror by age two is indicative of an emerging sense of self (Amsterdam 1972; Gallup 1977; Schulman and Kaplowitz 1977). The body schemata, if viewed as a primary cognitive structure, affects every aspect of the self, controlling individual perceptions (Markus 1977; Striegel-Moore, McAvay, and Rodin 1986). Various cues pertaining to food, body size, and attractiveness can activate a negative body schemata generating a sense of devaluation (Cash, Cash, and Butters 1983). Consequently, negative experiences of the self help produce a negative body imageD Since one's body image is in development throughout a lifetime we can conclude body images are socially determined. Socialization figures heavily in its formation. From the beginning caretakers interact almost exclusively in terms of body functions. Fisher (1986) believes that how the infant is handled early in life sets the emotional tone for how the individual feels later about body and selfo Many feel that various forms of body disturbances such as eating disorders and hypochondria give clues as to early relationships with care providers (Krueger 1990; Pruzinsky 1990; Rosen 1990). 46

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Research reveals that as the individual progresses through life, reaction to their appearance influence how they feel and think about themselves (Alley & Hildebrandt 1988; Cash 1990b; Lerner and Jovanovic 1990) and how we think and feel about the body in turn determines how we view the world (Markus and Smith 1981; Schlundt and Johnson 1990). If the individual has become self conscious about a particular facet of their body, enormous attention is focused upon it. The individual may spend a great deal of time comparing the affected body part for similarity and differences in an attempt to reassure the self as to its appropriateness ("mine isn't so bad as that or 11 I wish mine was more like that"). Kleck and Strenta {1980) provide some interesting findings on individual perception, personal appearance and social interaction. They contend that if there is self consciousness about the body or a body part, individuals tend to blame the defect for any perceived social slight. Public disregard by others is taken to be the result of ones own personal faults (i.e. the defect) and not associated with the bad behavior of another. This altering of information is such that it causes the individual to experience what they have essentially trained themselves to expect. In general females are affected by negative body images more than males. Fisher 47

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(1986) reports that women are more critical in regards to weight gain hence experiencing more eating disorders. He also found they had a tendency toward more somatization disorders and were more likely to undergo cosmetic surgery (American Psychiatric Association 1987; Cash & Pruzinsky 1990; Fallon 1990; Freedman 1990; Rosen 1990;). Since body images are so fluid, how we feel about ourselves changes. Different moods alter how we see ourselves. A more optimistic outlook makes our evaluation of ourselves more positive than if we were less optimistic. These changes in image can be both gradual and abrupt. Generally gradual change is psychologically.easier to accommodate than those which are more abrupt. For example it is the slow change in appearance accompanying the aging process that helps one to adjust to the process, despite the negative connotations connected with aging. One study on clients undergoing plastic surgery found that too drastic a change in appearance even though perceived to be pleasant was psychologically too disruptive to the individual (Pruzinsky and Edgerton 1990). The idea of "phantom fat11 is another example of individuals being unable to adjust to sudden changesQ Formerly overweight individuals who lose large amounts of weight in a short period of time continue to retain images of themselves as overweight 48

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(Cash and Pruzinsky 1990). Pertschuk (1990) compares the sudden onset of impairment versus those defects occurring with birth. In a clinical observation of burn victims he talks about the emotional adjustment that has to be made when faced with sudden disfigurement. This transformation from unremarkable appearance to one that is frightful and horrifying is abrupt. But the psychological adaptations that must follow are not as quick. There is a shock phase, a period of depression, gradual inventory of personal resources, and moving forward-to cope and to find people who stand by, people who aren't frightened, and people who are still able to react to the burn disfigured individual in terms of the person within. He has to cast around and try to move to construct a "new self11, an altered image that still affords some bearable level of self-esteem, in spite of the way the public reacts. (Pertschuk 1990:240) Obviously, body images influence our behavior& Fisher (1986, 1989) found that, particularly in our interpersonal relationships, the conscious, preconscious and unconscious body images the individual carries with them influences their behavior. Whether or not one is perceived or perceives themselves to be attractive or homely dictates whether or not one is viewed as confident or socially withdrawn (Clifford 1987; Cash and Pruzinsky 1990; Bernstein 1990; Pertschuk 1990). The development of defense mechanisms by the socially self conscious individual is done in general to conceal features of the body which cause concerno The stress involved in this 49

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behavior leads to reduced social interaction and in turn negatively impact the individual's self concept (Harris 1982; Cash and Pruzinsky 1990). This is especially true in this culture where there is a worship of the body beautiful and physical attractiveness is emphasized so heavily by popular media. studies show it is difficult for the able-bodied to develop a positive and comfortable body image with high self esteem. For the disfigured and disabled this can be even more difficult particularly since the minimum standards set have already alluded themg This thesis is concerned primarily with the psychology of appearances as it relates to disability. In order to give the body image concept any useful role relating to disability it has to be expanded to include subjective and objective portrayals of body experience. Meaning must contain concepts which include development, deviance and change in order to represent the diversity of body image concepts (Cash and Pruzinsky 1990). It is towards that end I choose to employ the concept of 'body image to include the experiences of the body as a whole. Even though the body can be experienced as a unified whole, Shontz (1975) identifies four qualitatively different types of body experiences: (1) the awareness of the body as an object in space; (2) the 50

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experience of the body as the locus of the self; (3) the appearance of the body in fantasy; and (4) the body as a functioning object where information is accumulated and expressed in symbols. All these experiences can be analyzed differently according to the functions they serve for the Physical impairment can affect and disturb any of these functions. During such disturbances the individual becomes acutely aware of the body's importance. This paper examines the process by which disabled individuals are able to re-assign meaning to their bodily experience through the experience of impairment. The correlation between physical disturbances and damage to the body is not as simple as it might seem however. A common assumption would be that a positive relationship should exist between the extent of body damage and the amount of disturbance to the body image. Surprisingly, MacGregor et al. (1953) found that individuals with less obvious defects sometimes suffered more from their appearance than those with more obvious defects. He argued that obvious defects appeared to expedite the adjustment process, pushing the individual to institute adaptation strategies sooner. Individuals with small blemishes seem to be caught up in the dilemma of psychological versus objective reality, where the belief in a spoiled identity 51

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appears to cause as much harm to self-confidence and self esteem as would an actual defect (Kleck and strenta 1980). The ambiguity of a borderline body defect may paradoxically intensify attention upon one's own body in order to define how apparent the defect is and whether it is of real consequence. But people with obvious defects can perhaps move at once to institute containing strategies. (Fisher 1986:265) As this passage indicates, some of our most basic assumptions are challenged by the research done in the last two decades. There is obviously an interrelatedness of physical and psychological functioning which is not always visible. Later sections will discuss this physical and psychological interplay in more detail. So far this discussion on the body has concentrated more on processes that affect both the unimpaired as well as the disabled. From this here I want to narrow the discussion to just the disabled community and examine the social, psychological and cultural impact on this specific group. To do that I need to review various psychological theories on disability that have evolved over the past few decades. These theories document the evolution of cultural beliefs about disability. Understanding how our beliefs originated help us to understand the various attitudes on impairment that exist and help explain the subordinate status of the disabled. 52

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CHAPTER V THEORIES OF DISABILITY The best summary of psychological theories on physical disability has been done by Richard Duval (1982). He explains that not all of these theories are equal, some have greater utility than others, and the major differences between them is in emphasis. There are seven major theories which can be divided into two camps a) those designed to explain the impact and consequences of impairment, and b) those discussing treatment in an effort to affect the adjustment process by the disabled. Neither focus provides by itself the most efficient formulation of theory. The most effective theory of course would be one that integrates both explanation and clinical treatment aspects into a single hypothesis. Duval contends that this has yet to occur. Reviewing the seven major theories a pattern appears, as each theory emerged it became apparent that there was an increasing recognition in the social as well as individual aspects to disability. Implicit Theories These were the earliest of the psychological theories on disability. They reflected the overriding

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concern of the medical caretaker, which was to save and eliminate the suffering of the injured person. The problems of psychological adjustment were seen as marginal and often considered outside the domain of the medical staff. It was widely believed during this time that once an injury was healed all psychological distress would disappear. For those left impaired or disabled, eventual acceptance of one's condition was assumed to occur after a so called "period of adjustment.n The problem with implicit assumptions about behavior was that people holding such ideas about what 11should11 occur often had no empirical information that was what in fact did occur. This had serious consequences for treatment. The axiom "heal thy in body, heal thy in mind 11 provides an example of this implicit or common-sense approach. Such a simplistic conviction equated a physical and psychological dualism that didn't exist. There might be a strong correlation when considering the acutely ill but not all individuals recovered psychologically after their physical wounds were healedo Some remained psychologically maladjusted even after a full and complete physical recovery. Eventually implicit theories were judged to be inadequate due to their inability to account for the wide range of human behavior and complexities of psychological adaptation. 54

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Motivational Theories Motivational theories proved to be not much better. These theories argued that all actions were driven by internal forces which were motivational by nature. swartz and Jordan (1980) define motivation as that mental process which encompasses drive, means and goals. 'Drive' is defined as that part of the process which initiates and maintains action with 'means' as the review by the individual of things learned in their attempt to find an appropriate response to situations. Both drive and means influence the goals selected by the individualo The difficulty comes in trying to identify the motivations of the individual due to different motives manifesting themselves within the same behavior. Imagine a person who is experiencing a sensation of hunger and feeling impelled to do something to reduce this drive. He reviews the knowledge he has about responses to hunger and decides that the means he will adopt is going to a restaurant and buying food. This is likely to accomplish his goal of eating and feeling full. At the same time, a self-esteem drive is operating, and he combines responding to his hunger drive with responding to his self-esteem drive and selects not just any restaurant, but an expensive one . In this example, two different motives are involved in a single sequence of behavior, and although they have different goals and different means, the two motives are both directing the persons' actions in going to the restaurant. (Swartz and Jordan 1980:131-132) 55

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Individuals attempting to apply motivational theories to the disabled generalized that poor motivation resulted in poor rehabilitation. Any positive outcome witnessed by the rehabilitation staff was attributed to the high motivational drive of the patient. The obvious flaw being the argument is circular. The amount of motivation could only be inferred from the outcome. All failure ultimately fell on the patient allowing the rehabilitation team to escape responsibility. A major flaw in this approach was its inability to incorporate other influences that might explain success or failure. Motivation alone is inadequate when trying to encompass the emotional, intellectual and social behavior of the individual. The only advantage these theories held over implicit theories was in their specificity on the effects of disability. Now, physical disability is seen as inducing a specific result: a lowering of motivational energy for proper goals. How "proper" goals are defined is not questioned. At this early period in rehabilitation efforts, the disabled individual's competence to decide what was proper or desirable has not been considered. (Duval 1982:178) Psychoanalytic Theory Around the turn of the century Sigmund Freud postulated that human behavior was not only influenced by the conscious mind but also by hidden thoughts lying in 56

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the unconscious. He argued that these unacknowledged wishes and desires of the individual at times would lash out in dramatic fashion. This theory seriously challenged the widely held belief of man being essentially a rational being. Psychoanalysis attempted to bring into the "consciousness" of the individual any hidden impulse operating within the individual's mental structure. Treatment involved breaking through hidden "resistances" in order to bring hidden impulses into the conscious awareness of the individual. This enabled the individual to reorganize their life and helping them avoid those emotional conflicts leading to obstructive and damaging behavior. The idea of hidden and damaging impulses provided an explanation for the irrational behavior of some individuals who continued to reject the advice and counsel of rehabilitation staff. What the motivational theories attempted to explain as a lack of incentive, had now been re-interpreted. Adjustment or the lack of it, now involved the mental health of the individual. Individuals refusing to face the reality of their condition were seen to be interfering with their own recovery. Any denial by the individual with staff assessment of their situation was interpreted as maladaptive behavior. Only when the patient agreed with the staff's definition was individual recovery possible. 57

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Duval explains that much like the motivational theories, psychoanalytic theory ignored environmental influences. Its focus was cognitive with no real treatment solutions developed. In fact, studies show that there were no significant behavior changes between those disabled individuals undergoing psychoanalysis, and those who didn't (Bandura 1969; Rachman 1971; Rachman and Wilson 1980). Body Image Theory The premise that feelings held by the individual about the body heavily influence behavior were introduced through body image theory by Schilder (1950). He saw the process of developing a healthy body image operating similar to the development of the individual's self concept. Like Fisher (1970) Schilder credited self concept theory with provided a foundation for integrating concepts about the body into psychological theory. Body Image theory attempted to explain the impact of loss in terms of its effects on ones' personal image. The actual formation of this theory was discussed earlier. Its subsequent development is undertaken in more detail in the following chapters, but for now the theory as it was originally proposed operated much like the motivational and psychoanalytical theories. Like other mentalistic 58

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theories it failed to address environmental influences on the individual. Duval criticizes another aspect: Although it appears that changes in self-perception do occur following disability, the exact type or direction of these changes is difficult to specify with body image theories. Different people change their self-perceptions of their bodies in different ways after disablement. Also, it is difficult to know the cause-and-effect relationship in these changes: Which comes first, the changed body image or the other cognitive and affective changes following disability? (Duval 1982:181) Questions raised by Duval are central to this discussion and this thesis attempts to outline the nature of the physical and psychological exchange in the development of a positive self image. Schilder's original hypothesis appears very general, but subsequent research has addressed some of the specific questions raised about cause and effect. Later sections will outline various available strategies used by individuals as they attempt to appropriate new physical realities into previously held images of the body. Anthropological and Sociological Theories A decline in popularity of mentalistic theories followed the recognition of more practical barriers to rehabilitation efforts. More so than the mental problems assigned to the individual was the identification of extensive social barriers to recovery. Up until this 59

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time the approach had been primarily on cognitive forces, with little recognition of social factors. With the arrival of anthropological and sociological theories there was renewed interest in explaining adjustment to disability in terms of the social and environmental pressures on the individual. Disability was seen as an event occurring within a cultural framework. Theorists sought to examine the individual within the context of sick roles as defined and sanctioned by the larger society. Illness behavior theories placed new emphasis on environmental factors and adjustment was no longer something occurring strictly in the mind (Mechanic 1962; Parsons 1964). Illness and disability were now socially defined statuses, not just an objective physical state. This change in emphasis helped to balance previous discussions about disability. But as Duval points out these theories under extreme conditions tended to commit the same mistakes as mentalistic theories. By focusing on an area formerly neglected, the external environment, they often emphasized external aspects to the exclusion of internal ones. Although each type of theory provides a needed counterpoise for the other, neither presents a comprehensive view of the psychological relationship between personality and illness or disability. (Duval 1978:252) 60

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Integrative Theories Integrative theories attempted to incorporate both cognitive and environmental aspects by stressing both the social and interpersonal influences effecting behavior (Wright 1960; Meyerson 1971). Such theories did not recognize environmental influences as having a direct effect, but as a mediator of internal mental processes. This was accomplished through a series of cognitive processes designed to assign meaning and value to the experience. One example was Wright's (1960) somatopsychological theory. It is seen as unique due to the way it combines both environmental and mentalistic factors. Wright was the first to debunk a common bias depicting all aspects of impairment as negative. She argued that the diversity of reactions among the disabled was the result of each individual's own response to personal internal and external realities. Meyerson (1963) also hypothesized that adjustment was determined by internal and external variables, but he placed even greater emphasis on the social factors in comparison to Wright. Meyerson felt that the authority of the larger society to define what and who is disabled was more coercive than internal pressures. Society was seen as the primary force behind devaluation, cognitive orientation by the individual secondary. 61

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While Wright and Meyerson both supplied encompassing theories combining environmental and intrapsychic factors, Duval questions their claims at being truly integrative. He is critical of Wright's somatopsychological theory because he feels it lacks overall congruence. She has introduced a sophisticated psychological framework in which to deal with somatopsychological relationships, but the actual canvas has been left empty, remaining to be filled. Many intervening mental variables have been proposed [but] she has not even attempted a complete organization of all the concepts she has reviewed. (Duval 1982:185) He is less critical of Meyerson feeling that his theory's capacity to explain is at least as powerful as its ability to provide treatment goals. In the end, however, neither Wright's or Meyerson's attempts were able to integrate cognitive and environmental factors so that they both explained the impact and consequences of impairment as well as discussing treatment methods as it applied to the adjustment process in the disabled individual. Behavioral Theories Behavioral theories originated out of the experimental learning laboratories. These laboratories attempted to measure observable behavior, and examine 62

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environmental-behavior alliances as opposed to relationships between attitudes and behaviorG Adjustment to disability was seen as no different than adjustments made to any other phenomenon. The same psychological principles were seen as applying both to normal and abnormal behavior. These theories recognized no special personality type, thereby acknowledging no specific theories of disability. Learning was considered a fundamental component in the development and management of behavior. The most well known of the behavioral theories was Bandura's (1969, 1977) social learning theory in which neither environmental or cognitive factors weighed any heavier than the other. Instead the relationship was seen as the reciprocal interaction between the two. Behavioral, cognitive and environmental influences were all considered equal sources of motivation. These theories had a distinct advantage over integrative theories in that cognitive and environmental variables were incorporated equally within the explanatory and treatment aspects providing encompassing explanations as well as therapeutic techniques for treatment. However, Duval (1986) argues, that the flaw in their approach was a lack of concentration on internal psychological processes. Because there was a lack of understanding in 63

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how the individual organized their reality, treatment staffs found themselves alienated from the patient often impeding any constructive change (Dembo, Leviton, and Wright 1956; Neisser 1967). Since the 1950's there has been a tendency to attribute psychological maladjustment of the individual to environmental factors. Recent trends, however, indicate that both the mentalist and environmental theories have something to offer in trying to understand disability. For those patients with obviously neurotic behavior the early mentalistic theories do provide valuable insight into human behavior. Whereas the integrated social-psychological theories of Wright and Meyerson are more constructive in trying to understand broader psychological aspects to disability even though they're more conceptual than technological and fail to produce specific recommendations for treatment. Operant methods represented by behavioral theories prove to be worthwhile when trying to understand individual behavior under a controlled environment (such as sheltered workshops and therapy rooms) but like psychoanalysis and the integrative theories lack the ability to produce specific solutions to concrete problems. Obviously the goal of future theoretical development will be to find a truly comprehensive approach that will incorporate all 64

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these methods, mentalistic, integrative and behavioralistic alike, in ways which will be mutually supportive. 65

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CHAPTER VI ROLE THEORY Role theory deals with the organized performance of the individual in accordance with a status or position. Biddle and Thomas (1966) contend that individual behavior should be examined in terms of how it is shaped by these external rules and demands. This shaping is accomplished primarily through expectations and sanctions the culture places on conforming and nonconforming behavior. This is not to minimize personal differences between individuals, only to emphasize the social determinants that regulate behavior. Those expectations associated with a status as it applies to relationships with individuals of other statues are called "roles" (Swartz and Jordan 1980). Such expectations are learned through both direct and indirect experiences. For the disabled individual a particular type of behavior is anticipated and a reciprocal expectation is held by society. By focusing on these social determinants clues are provided as to which conditions in the society have a greater influence on individual performance. Within society the individual occupies many different positions. Performance in a position is determined by several things: the social norms, cultural

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requirements and rules; the performances of others in their positions; spectators reacting to a performance; and finally the individual's own capabilities and personality. Roles develop from the interaction that takes place between the individual and their environment. It is this environment that influences behavior and coerces the individual to adopt a particular role. It is because as individuals we are role-players that behavior appears to be so uniform. Numerous scholars contributed to the formation of role theory. Some of the precursors included James (1890), Baldwin (1891,1897,1899) and Cooley (1902,1909) who provided insightful discourses on the concept of self. Dewey (1899,1922) examined habits and conduct; Sumner (1906) held discussions on mores and folkways. Maine (1861) was the first to present the idea of status; Simmel (1920) contributed with his essays on interaction and finally Durkheim (1893,1894,1897) and Ross (1908) are credited for their contributions regarding various social forces. Although the word 'role' was used collectively by these authors it was not commonly used to designate a precise concept. Not until the 1930's was there was a serious attempt to come up with a more precise definition. Nevertheless most definitions have emphasized the 'positional' aspect within the social 67

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structure, the 'content' of the role where goals are identified, and the 'exchange' aspect which delineates the relationship between the performer and others. G.H. Mead (1934) was one of the first to call attention to the individual's ability to capture the thoughts and feelings of others and then imagine ourselves in their place. He has been credited with the idea of 'role taking', a process of 'looking at or anticipating another's behavior by looking at the role assigned to that person'. Without the ability to predict what others will do, social life is viewed as impossible. This type of social empathy increases as the individual moves from infancy to adolescence. Mead was preoccupied primarily with the origin and function of "socially reflective behavior" as well as problems of maintaining order within continuously changing social organizations. Heavily influenced by his colleagues at the University of Chicago, his ideas were considered instrumental to the ideology and growth of symbolic interactionism in sociology. Around the same period Jacob Moreno was carrying out experiments with groups of role players in the theaters of Vienna. His 1934 publication Who Shall Survive is considered a classic on the use of role playing in psychodrama and socio-drama and the inspiration for a 68

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specialization called sociometry. 11Role-playing11 involves imitating activities in an attempt to produce proficiency at a particular performance. The imitator practices an assigned role using real-life or symbolic models for behavior. The different responses are then available for transfer to real life situations. It was seen as a particularly effective means of propagating behavior change. Moreno characterizes three different types or roles; psychosomatic, psychodramatic, and social. His insights made important contributions to our understanding of human behavior. Unlike Mead's idea of taking the role of the other, Moreno saw role-playing as an instinctive act, a type of spontaneous playing. He saw Mead's role-taking as a finished outcome, a 11role conserved.11 Role-taking may be considered as an experimental procedure, a method of learning to perform roles more adequately In contrast with role-playing, role-taking is an attitude already frozen in the behavior of-the person. (Moreno 1960:84) Finally, anthropologist Ralph Linton was instrumental in separating the concept of "status from that of "role" which up until that time had often been used interchangeably. 69

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A status, as distinct from the individual who may occupy it, is simply a collection of rights and duties A role represents the dynamic aspects of a status. The individual is socially assigned to a status and occupies it with relation to other statues. When he puts the rights and duties which constitute the status into effect, he is performing a role. (Linton 1936:113) The relationship between the two, role and status, is admittedly a close one. But the works of theorists such as Mead, Moreno and Linton provided the necessary foundation in which understand individual behavior as a role performance. This provides a link between individual behavior and the social structure. We are able to use such a framework to further analyze society. Role of the Disabled Kutner (1968) contends that the formation of roles depends on the needs of the society as well as the individual. When disability occurs it is accompanied by several disorders such as social disarticulation, severed relationships, and fractured associations (Weissman and Kutner 1967). In general the disabled individual must be exempted from former obligations. The disability changes not just their behavior but also the way in which they perceive self and others. Changes in perspective are essentially due to difficulties faced when trying to find and keep a job, resume old relationships and assume 70

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normal household responsibilities. The individual is faced with the task of resuming old roles where impairment impedes the normal demands placed on them. Disability interrupts these established roles forcing them to reconstruct new ones. Looking at disability from a role perspective helps us to predict and explain some of the adjustments the individual is forced into making. Thomas (1966) provides a valuable outline of five new roles the disabled often found themselves performing: the disabled patient, handicapped performer, helped person, disability co-manager and public-relations man. The titles were reflective of the behavior of the disabled and others surrounding them. Not all the roles applied to every individual but Thomas argues that at least one of the new roles are familiar to any disabled person. The first was that of the 11disabled patient11 According to Parsons (1951) sickness depicts a deviant status for the individual whereby one is relieved of their normal role obligations and excused from previous responsibilities. Illness is legitimized on the condition that the individual will cooperate and abandon the sick role as soon as possible. Expectations placed upon the injured were directly related to their sick role. The role carried with it the expectation that the 71

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patient be dependent, and compliant to the rules of the hospital setting. The individual is expected to give up all previous role responsibilities and relinquish outside positions of power and prestige as a prerequisite for fitting into the hospital setting. This is accomplished primarily through the hospital's ritual removal of all clothing connected to the outside and issuing nondistinct clothing for the purposes of sublimating individuality. There was an implicit understanding between staff and patient that suffering and pain were to be expected and endured gracefully. And finally, the patient must agree to want to recover by doing everything in his power to accomplish that goal. critics point out that the sick role concept was created in response to acute illnesses and provides a difficult fit when dealing with permanent physical impairment (Mechanic 1959). Chronic illness differs from acute in that it is not a temporary condition so motivations to "get well11 often are inapplicable. A second problem is the disabled are generally ambulatory so total performance is restricted only partially, not totally. As a result deviancy becomes a chronic situation with the permanently impaired. This permanent deviancy was not anticipated in the original sick role concept. For these reasons trying to apply 11sick role11 72

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and deviancy models to explain the behavior of chronically impaired individuals is risky. The second role described by Thomas was of the 11handicapped performer.11 Here disability implies a permanent loss in one's physical efficiency, referred to by Thomas as a 'handicapping of performance'. This impairment can range from minimal loss to total denial of movement. Consequently, the normal routines of the disabled are altered or transformed in some way. For one the individual is less able to care for himself physically. Occurring also are major modifications in the sex role. Another handicapping of performance involves the diminishment of employment opportunities. In short changes occur in almost every role previously played by the individual (daughter, son, mother, father, spouse, etc.). The behavioral repertoire of the disabled person is not merely less complete than that of his non-disabled counterpart; it is also a partial collection of behaviors which are substitutes for those lost due to the impairment or for those which the person never had in the first place (Thomas 1966:5) The third role was that of the 11helped person." Impairment automatically results in an increased need for help. The individual must emotionally and psychologically adjust to a role which makes them an 73

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'object of aid.' As a helped person, they are bared from an important cultural achievement, that of being independent and self reliant. This can be a major source of conflict for many of the disabled, particularly in an achievement oriented society like ours where individual accomplishment rather than process is a principal goal. Differences in achievement norms between societies certainly impact how well the individual adjusts to this more limited role developed countries are characterized by the prevalence of achievement norms, universalism and specificity, whereas underdeveloped countries are characterized by ascriptive norms, particularism and diffuseness. That is, in developed countries people are evaluated in terms of what they can do (achieved status) rather than in terms of who they are (ascribed status); and the relationship of one man to another is typically more specific, or limited to the labor contract, rather than diffuse as in a traditional society where economic relationships are tied intimately to all sorts of other relationships involving kinship, political, religious and other social structures. (McClelland 1961:16-17) The fourth role was "disability co-manager and describes the added responsibility placed on the disabled where suddenly they are required to become active participants in major decisions about treatment, medications, routines and therapies affecting their lives. The last role Thomas identified as that of "public relations man." Most of us know what the role of 74

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a wife, mother, or teacher involves. We have a good idea of the behaviors appropriate to the roles. The role of the disabled however, is not a common experience hence the disabled person often finds themselves involved in explanations about their appearance able-bodied individuals rarely are. The disabled complain that this 'burden of explanation' consumes a lot of their time. The kinds of information repeatedly dispersed by the individual to curious strangers, friends or even a potential employer run the gamut. There are repeated questions of: What's wrong with you? How did you get this way? Do you need any help? How does your condition affect how you perform certain task? This lack of privacy can extract a high emotional toll. Socialization and Disability Benedict (1938) argued that abrupt changes in cultural role training produce a state of 11role discontinuity... To the extent that continuity was the degree of similarity between requirements for achievement between two different situations, dis-continuity accompanies the situation where sudden change attends the transition between one position to another. Thomas (1966) argues that dissension arises when the individual is exposed to conflicting sets of role expectations. 75

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Discontinuity, ambiguities, conflict between individual norms with the demands of others, all produce conflict between the individual and their role, resulting in "role strain" (Thomas 1966). The impossibility of fulfilling these expectations results either in a compromise or an abdication of the role description. While some frictions in role expectations are ego-driven, most are the result of conflicting expectations on the disabled individual imposed by the social system itself (Parsons 1951). The roles assigned the disabled themselves are a source of contention because they represent a stigmatized status in society. In a protracted review of the problems of disability and the difficulties of role adjustment Thomas (1966) found that certain elements of role theory helped to explain the stresses and alteration of disability. Thomas saw this sudden onset of impairment often accompanied rapid re-socializationo Particularly with adults, the individual finds themselves involved not only in learning new behaviors, but in the "unlearning" of old ones. Since role behavior in general is learned behavior, much of what is known about the learning of roles stems from our understanding of the "socialization" process, a process whereby the individual acquires sensitivity to various social stimuli and learns to 76

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interact with and behave like others in the group. Socialization is concerned mainly with learning socially relevant behavior at various stages throughout life or the process of becoming a social being. Generally this terminology is applied when discussing childhood experiences. However adults are continually being 11re-socialized11 in regards to the internalization of values and norms in the society. Disability modifies existing roles in the individual and at the same time introduces new ones obligating the individual to re-socialize. In this society the fact that disability is seen as a social stigma complicates the course of re-socialization for the paraplegic. Their new role requires that they accumulate whatever physical and social skills that will reduce the stigmatizing effect of impairment. Positive changes in identity occur as problems are negotiated and mastered. Frequently, social encounters are avoided until a successful level of accomplishment is possible: Paraplegics, seemingly unaware of the long-range process, order their course of socialization in response to day-to-day problems by avoiding social situations where negative social response can destroy positive definitions of self, by seeking out social situations where demands are not beyond their current level of competence, and by manipulating social encounters to emphasize positive and minimize negative aspects of self. (Cogswell 1984:159) 77

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After the disabled leaves the hospital, there is little assistance with learning the new social skills needed to negotiate successful relationships with family and friends left back in the community. The individual is required to reassemble roles on their own through a process of trial and error. In one study, newly released paraplegics were interviewed at various intervals following hospitalization about what they did, whom they saw, and how they responded and were responded to by others. The study revealed that each person had designed their own program for reentry into the able-bodied community. Most of the problems they encountered had been handled and solved with little or no help from the professionals (Cogswell 1968) Using data collected at a general teaching hospital, Cogswell found that the average paraplegic needed a little more than a month after leaving the hospital to practice newly acquired physical skills to function adequately. Most however, took anywhere from one to several years before they found themselves ready to resume work roles. Upon their return to the community they found that intimate relationships as well as casual contacts along with a variety of other roles had been notably restructured. 78

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Few friendships prior to the trauma were maintained. The continuation of old friendships was difficult. Friends were reluctant to let go of old identities. Enormous distress attended the process of re-establishing relationships that were accompanied by sudden changes in social positions and identity. Paraplegics had difficulty integrating and adjusting to the reactions exhibited by old friends. They found that prior identities exacerbated the re-socialization process and hindered their ability to adapt to a new situation. As a result paraplegics felt compelled to procure new friendships often with individuals of a lower social and socioeconomic status than those they were leaving behind (Davis 1963). The most prominent challenge is acquiring the skills of stigma management. For example some segments of the disabled population attempt to minimize the level of stigmati-zation by the larger society so as to lower their degree of deviancy. This sometimes includes the avoidance of others who have been similarly stigmatized. Attempts at not becoming overly involved with other disabled individuals is the stigmatized person's way of managing the stigma placed upon himself. An observation made by Saragin (1975) involved the apparent attraction of 11overconformity" found among some disabled. He found 79

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that just like the immigrant who becomes the superpatriot, some disabled tend to overcompensate for their physical difference by restricting their deviation in appearance. Many tended to avoid flamboyant dress, colors and hair styles. For instance accoutrements such as beards that don't uphold conventional attitudes and identities were avoided. Many of these individuals try to conceal any political or religious beliefs that don't represent mainstream views under the belief social interactions would be more strained. This conventionalization of relationships is a way of dealing with the stigmatization associated with unconventional physical appearance. The next section discusses some of these stigmas and their impact on this population. 80

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CHAPTER VII ATTITUDES AND BELIEFS Allport (1954) insists that an adequate definition of prejudice contains two key elements: an attitude of favor or disfavor; and an overgeneralization (and therefore erroneous) belief. He states that prejudiced statements may contain either an attitudinal or belief factor, and gave as an example 11I can't abide negroes vs. negroes are smelly." It is imperative that we understand the difference between an attitude and belief. Beliefs to some extent can be changed whereas attitudes less so. Since attitudes are derived through experience they are an integral part of the socialization process. Thomas (1980) contends that the study of attitudes might enhance our understanding of this process and contribute to our comprehension of prejudice formation. While it is reasonable to assume that increased contact with a group and greater access to information about the group results in a more accurate set of beliefs, this does not necessarily involve attitude change. One study showed a significant difference in information concerning minority groups between individuals with higher levels of education compared to those with much lower levels (Allport 1954). Answers to questions between the two

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groups resulted in a difference on the order of 30-40 percent. But attitudes were found to be considerably less related to the individual's level of education. While education-especially specific intercultural education-apparently helps engender tolerance, we note that it by no means invariably does so. The correlation is appreciable but not high. Therefore we cannot agree with those enthusiasts who claim that "the whole problem of prejudice is a matterof education". (Allport 1954:434) Even though there is a tendency for individuals found to be more conservative and rigid to be less tolerant, prejudice exists among all socioeconomic, political and educational categories (Adinarayaniah 1941; Adorno et al. 1950). Bethlehem (1985) discusses several principles which he maintains explain and predict prejudiced behavior and thinking. He argues that there are two interacting types of prejudice: one is based on personality structure and needs, and the other on misinformation. As labeling theories have suggested, most of this is based upon a cultural "need to keep the cognitive load light.11 When groups are in competition or conflict, and members of one group fear those of another, individuals recognize that they belong to one group versus another. Under these circumstances there exists a preference for those individuals of the so called 11ingroup.11 This 82

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preference is often accompanied by unfavorable attitudes towards those of the 11outgroup. n Members of the ingroup group tend to identify not only with their group but also with its values. It is difficult to identify with one's culture or values without coming to regard them as best. This tendency to judge the behavior of others on the basis of ones own value system is known as "ethnocentrism." As a result the less information individuals have about other groups, the more likely they are to respond in terms of stereotypes. Negative attitudes towards various ethnic groups are widely held within the society having sweeping effects on individual behavior within ingroup and outgroup members. Frequently, these prejudices are self-fulfilling. Beliefs that various groups have certain characteristics and cross values from one's own group identity tend to support the so called evidence" that these groups are deviant. In part these prejudices are a reflection of the societal norms associated with the ingroup. Consequently, they remain relatively stable as long as norms remain stable, and rarely change unless governing relationships between the two groups do. Sources of Negative Attitudes Livneh (1988) outlines six different sources 83

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responsible for the negative attitudes directed towards the impaired. None of the six categories are mutually exclusive of each other, and all overlap to some extent. They are presented only to offer some indication of the complexity of negative attitudinal sources. Sociocultural Sources This perspective says that beliefs about others are collected the same way beliefs are acquired about anything, through direct experience and from interactions with others. Sociocultural sources of negative attitudes range from those associated with social and cultural values and norms to psychodynamic and developmental experiences. Beliefs about the disabled are transmitted primarily through parents, the media and by any other socializing medium. Social and cultural norms would include societal emphasis on physical integrity, the individual's personal appearance, health, athletic achievement, etc. (Wright 1960). Included also would be one's personal achievements and the ability to be gainfully employed (Safilios-Rothchild 1970). Psychodynamic factors would include such things as Wright's (1983) observation of 11spread,11 where additional negative attributes are attached to and generalized from one specific limitation, to ideas that the disabled are 'evil and dangerous' individuals and 84

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'disability is a punishment for sins.' The sociocultural perspective tries to explain how false assumptions originate and are transmitted through the society. By taking selective experiences out of context it's easy to arrive at incorrect conclusions. Limited and unrepresentative exposure to the disabled lead to many erroneous beliefs. This is particularly true when there is no recognition of how behavior is affected by the context of the situation or how role relationships have been affected (Jones et al. 1984). Allport (1954) contends that traits assigned to minorities tend to be the same ones assigned to any group that exhibits insufficient political power, calling such attributes the "traits of victimization.0 Affective-Cognitive This source represents the emotional reactions of anxiety and guilt at one end to abstract reactions like individual lack of insight. Sources of negative attitudes from this perspective include aesthetic aversion at the sight of body deformity (Siller 1963; Siller et al. 1967), and the concerns of the individual at being disliked due to perceived abnormalities (Heider 1958; Yamamato 1971; Weinberg 1973). Negative attitudes also emerge from individual anxiety connected to their perceived threat to the body image. For example one 85

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belief frequently documented is that of 0distressed identification", the fear that a similar impairment can befall oneself simply by being in the company of a disabled person. Conscious-Unconscious Sources Attitudinal sources within this dimension range form those the observer is fully aware of to those the observer is presumed to be unconscious of. Conscious attitudes include identifying moral responsibility with the etiology of disability, fear of social ostracism and contamination or inheritance through interaction with the disabled (distressed identification). Unconscious, generally involve attitudinal sources from early childhood relating to childrearing practices and experiences as observed by Wright: When a child sees someone condescendingly toss a dime into the cap of a beggar, he is learning something. When the child sees a child with a disabled foot participating in the classroom, he is learning something. Such experiences, whether verbal or behavioral, can be crucial in the development of attitudes toward disability. (Wright 1983:269) Past EXPeriences-Present Situation Negative attitudes stemming from this source come from early childhood as well as current situational influences. Early life experiences typically refer to parental beliefs about health and normalcy during which 86

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time children collect numerous biases on the nature of disease and impairment. Bethlehem (1985) found that even though children are capable of discriminating at an early age between members of different ethnic groups and may develop ethnic attitudes at an early age it takes time to develop consistent attitudes and preferences. Typically children develop similar attitudes and prejudices held by parents and other primary agents of socialization. Internally Originated-Externally Originated This category includes negative attitudes of the observer (able-bodied) and the observed (disabled) individual. Variables associated with the observer (able-bodied) include such demographic characteristics as sex, age, socioeconomic status and education levels. Studies show that females demonstrate more favorable attitudes than males toward disability, and young adults display more favorable attitudes than adolescents or the elderly (English 1971; McDaniel 1976; Schneider & Anderson 1980; Ryan 1981). Other personality variables would be ethnocentrism, authoritarianism, rigidity and aggressiveness. One study found that people expressing ethnocentric attitudes toward an "out11 group tend to express the same attitudes toward any other "out" group, for example the disabled (Chesler 1965). 87

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At the other extreme, internally originated sources include characteristics associated with the actor, the disabled individual. Behavior would include such things as over-dependence, avoidance of gainful employment, withdrawal from social contact etca Other sources include attributes affecting type and degree of disability, such as body parts deformed or functions diminisheda Studies find that socially, mentally or psychiatrically affected individuals are generally perceived more negatively than physically or sensorially disabled individuals ( Safilios-Rothchild 1970; Furnham and Pendred 1983). Theoretically Based-Empirically studied Sources A growing body of research seems to suggest that, in general, negative attitudes correlate with specific situations and personality factors. Theoretically based sources include all the theories formulated from observations of childhood experiences, parental influences, threats to body integrity etc. Empirical findings consist of relationship studies of negative attitudes towards the disabled using psychometrics. Two important measurements have been the Attitude Toward Disabled Persons scale (ATOP) and the Opinions about Mental Illness (OMI). sa

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While these sources of negative attitudes are helpful to understanding the persistence of such attitudes there is always some dissension between the expressed attitude and individual behavior. Bethlehem (1985) asserts that measures of attitude which correlate with prejudice and social distance can predict overt behavior even if the fit is less than perfect. In general attitudes toward the disabled tend to be negative, but difficult for researchers to measure (Roessler and Bolton 1978; Wright 1983). Respondents are even more reluctant to express negative attitudes about the disabled than they are about racial, religious or ethnic groups (Katz, Bass, and Bailey 1988). In a study by Heinemann et al. (1981) a group of German students were questioned about their attitudes towards the physically impaired. The students consistently expressed only positive attitudes. Later under hidden observation, researchers judged them to be much more uncomfortable around the disabled than able'bodied when forced to physically interact. Students consistently sat further away and interacted less with the disabled informant than informants. Such prejudices greatly influence our reasoning process. Several studies show that fallacious reasoning runs parallel with prejudices. Janis and Frick (1943) 89

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designed a study whereby postgraduate students were asked to judge syllogisms as to whether or not they were logically sound. The authors found that students were more likely to judge an unsound argument as sound and a sound argument as unsound when the conclusion agreed with their own preconceived notions. Feather (1964) corroborates this tendency for people to evaluate arguments as sound when conclusions agree with their own prejudices. He observed that students with positive attitudes toward religion tended to make fallacious conclusions in conjunction with their own religious bias. This was especially true among students judging themselves to be strongly pro-religious. Attitudes Among the Disabled Weinberg (1988) found that feelings of the disabled on being impaired "varied along a continuum." At one end was expressed extreme bitterness and tremendous regret, at the other end were people who considered their situation enjoyable and appeared to embrace their disability. The vast majority neither liked or disliked their condition and simply accepted it as a condition of life. The study also found that during different phases in their lives individuals shifted their position along this continuum and did not appear to be fixed. 90

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Weinberg discloses that the first group, which was very bitter, fit society's impressions about how the disabled 0should0 feel. Individuals in this group felt disability was the worst thing that had happened to them and they were obsessed with their limitationsm They felt impairment prevented them from accomplishing and achieving their goals. The loss dominated all their emotions and permeated every area of their life. At the other end of the scale were those individuals who embraced their situation. These individuals felt that who they had become was due primarily to their disability. They liked who they were and felt that without the disability their new self identity would be threatened. For this group disability was considered an opportunity to grow and enhance their life experiences. They viewed their impairment as a challenge that gave them satisfaction and confidence in their ability to overcome life's difficulties. This was the kind of challenge they thought they would have undertaken on their own if the disability hadn't occurred. The majority of the disabled however, were found to lie in between these two extremes. This group saw disability as neither a fortunate or unfortunate event, simply a fact of life. They saw impairment as an obstacle to be overcome in order to continue on with 91

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their life. Most saw their limitations as no different then other challenges faced by able-bodied individuals. In fact, most listed other events in their lives as more stressful or requiring greater adjustment than their impairment. Overall they seemed to imply that disability was a struggle like any other and "not the worst thing that's ever happened." Attitudes Cross Culturally Anthropologists see culture as a uniquely human achievement through which ideas and values are passed from one generation to the next. Cultural norms influence the type and similarity of behavior found in every society. In fact the predictability of behavior is due in part to this sharing of similar cultural conditioning. There is a high correlation between prejudice towards the disabled and cultures that place high value on the health and physical appearance of the individual (Jaques and Linkowski 1968; Schneider and Anderson 1980). cross culturally there is considerable variance but a preponderance of negative attitudes towards the disabled continues to be documented in virtually every type of society, "traditional" or "modern." 92

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In one study done in Israel, it was found that Israeli Arabs had a more negative attitude towards the disabled than did Israeli Jews. There may be several extenuating factors (level of religious belief, age, gender, education) but a compelling argument has been that the more non-industrial the culture the greater the degree of negativity compared to more modern cultures (Tseng 1972; Florian 1977). Israel provides an excellent environment in which to study cross cultural attitudes towards the disabled. According to several studies, Jews of Eastern origin (those born in Balkan, Middle-Eastern or North African countries) take a fatalistic approach to physical disability. Disability among this group in general is seen as a punishment from god (Chigier and Chigier 1968). Jews of Western origin (North and Central America, Europe) by contrast appear to have a more positive attitude toward the physically impaired. Rofe, Almagor, and Joffe (1980) believe this may be due largely to a greater exposure to western values of equality and equal opportunity, where the value of human life is emphasized over individual imperfection. While it looks as if Jews of Eastern origin have a more negative attitude towards disability, others argue that factors such as socioeconomic and educational levels are more indicative of the differences seen in attitude. 93

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The Israeli study showed that by comparison Jews of Eastern origin had a lower socioeconomic and educational level than Western Jews (McDaniel 1976; Florian and Katz 1983) and that this explained the differences seen between the two groups. Such conclusions compare favorably with another study done by Hanks and Hanks (1948) who insist that conditions which give rise to cultural attitudes towards disability can be found within the economic structure of a society. This would mean protection of the disabled increases in relationship to a tendency for greater social inclusion. Hanks and Hanks conclude that these conditions are found in cultures where the level of productivity is higher in proportion to the population and where distribution is nearly equal. Under such conditions the criteria for achievement are less formal than those found in hierarchical societies and weighted more with concern for the individual. This is because in such societies competitive factors between the individual and the group have been minimized. 94

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.CHAPTER VIII THE SOCIOLOGY OF SPOILED IDENTITY Heider's (1958) balance theory of sentiments states there is an interdependence between a person's liking for someone (sentiment relation) and the feeling of belonging with that person (unit relation). Although there are several factors giving rise to the feeling that two individuals belong together in some way, the strongest influence is that of similarity. This would include individuals with similar beliefs, religions, nationality, etc. By contrast, dissimilarity and unfamiliarity tend to provoke negative affiliations. This applies directly to the prejudices toward the disabled where the resistance to include may be due to the differentness of the situation. The caution implied in 11may0 is due to the inconsistency in Heider's theory. The idea that similarity and familiarity tends to induce liking is a well supported proposition. However dissimilarity and unfamiliarity do not always induce negative reaction. Sometimes differentness provides its own allure, where perceived dissimilarity simply leads to the absence of a unifying force instead of operating as a force to separate people. The observer is seen as being

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indifferent to the dissimilarity, or dissimilarity is seen as complementing the individual, providing a positive response. Finally, dissimilarity can be perceived as disturbing, particularly when it arouses fear or loathing. When this occurs then the differentness is likely to produce alienation and dislike. Many believe that attitudes toward the disabled parallel those directed toward minority groups in general (Barker et al. 1953; Wright 1960). Because the physically impaired have been marginalized by the society several of the same stereotypical attitudes exist towards this group as with other stigmatized racial, ethnic and religious groups. As these other groups have been segregated and isolated, so have the disabled (Wright 1960; Safilios-Rothchild 1970). Spoiled Identity In Goffman's (1963) discussion of spoiled identity, he outlines three different kinds of stigma. Represented by (1) deformities of the body (2) defects of character which he equated with a weak will, unnatural passions, rigidity of beliefs and dishonesty and finally (3) tribal stigmas involvingrace, nationality and religion. He argues all three categories illuStrate the same 96

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sociological feature of 11spoiled identity.11 Individuals that have been marked find that except for a single trait they might have been readily admitted into customary social gatherings. But the possession of this stigmatizing trait by itself overshadows all other positive attributes. Even if an individual rejects a stigmatizing label the reactions of others force a change in their social environment, transforming every interaction. This is due in part because society often views impairment not only as a loss of function, but also as the loss of an essential part of ones' humanity. Longmore (1987) contends that society tends to attribute a range of imperfections on the basis of this one 11spoiling11 aspect which has defiled the entire social identity of the individual. This stigmatization operates as a defense against the anxiety that results from contact with unfamiliar situations. By labeling any situation that varies from the cultural norm and allocating it to a category with preassigned behavioral responses the anxiety of the situation is greatly reduced. Once a label has been applied, there is no need to process additional information. So pre-classification accomplishes three things: tensions are reduced, the environment is simplified, and the need to examine in more depth a 97

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situation labeled deviant is alleviated. The unfamiliar has been made familiaro The way in which impairment effects the individual's perception of self and those around them depends largely on the various social and psychological factors both within the individual and the social groups to which they belong (Sussman 1965). Stigma is an important component in this process of labeling. It identifies the individual as flawed, marginal and ineligible for normal participation. One of the earliest references to the stigmatization of the physically disabled appears in the bible. The idea of "just retribution" provided an ethical defense for open discrimination. Numerous biblical references allude to this connection between sin and disability. The idea of sickness or disability as divine retribution for sin is still prevalent. such beliefs were documented by Sommers (1944) in a survey of parents with blind children. He found distinct attitudes reflecting the societal view of disability and its connection to personal wrongdoing. Blindness was viewed as symbolic of punishment from God brought on by some violation in the moral and social code. Parents expressed concerns about the neighbors' views on their personal habits. The survey indicated that attributing various social diseases to parents of handicapped children was 98

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widespread. Feelings of shame, personal disgrace and negligence surfaced when parents realized that such beliefs might be attributed to themselves. Most parents confessed to feelings of guilt in having blind children. Labeling The problem with most labels of course are the stigmas attached to them. Most conjure up negative implications causing self-doubt and conflict within the targeted individual. In the 1960's labeling theorists started looking at labeled individuals more as victims than as society's victimizers. Identifying with deviants of all sorts, they instead began to question the stereotypes of the larger society and started to review the so called norms. Many conceded that the labeling of an individual essentially locked the individual into deviancy. As the individual learns to fulfill the expectations of their label they eventually became fixed in the role. Saragin (1976) observes "after being treated by society as if he actually were what he was supposed to be, he eventually becomes just that". Several theorists suggest that the treatment and rehabilitation programs implemented by society are merely social processes used to analyze the "selection, negotiation and treatment" of behavior labeled deviant by 99

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the society (Friedson 1966; Scott 1967; Safilios-Rothchild 1970)& Since each society reserves the right to decide who is deviant the deflnition of what is and is not varies. Edwin Schur's (1971) definition is widely recognized: Human behavior is deviant to the extent that it comes to be viewed as involving a personally discreditable departure from a group's normative expectations, and it elicits or collective reactions that serve to 'isolate', 'treat', 'correct', or 'punish' individuals engaged in such behavior. (Schur 1971) What Schur's definition doesn't address is the question of intent on the part of the individual. Although he does recognize that individuals who willfully participate in deviant acts are held more responsible for their predicament than others. By grouping the disabled in with other voluntary deviants, conceptual and normative problems are created. The disabled have not deliberately broken any rules. Their choice was not an intentional one. This means that the disabled have been labeled deviant primarily due to their condition and not their behavior. Conrad and Schneider (1980) point out that the concept of deviant behavior as well as the agencies mandated to control such behavior have changed over time. As the medical profession has come to dominate every areas of health care, there has been an 100

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expansion in their jurisdiction. The change in the definition of deviancy from willful behavior to involuntary medical states has been the result of that expansion. Once a condition has been defined as deviant various :mechanisms for rehabilitation are instituted. Medical redefinitions of various conditions have increased the need for :more treat:m.ent and rehabilitation progra:m.s. This in turn empowers medical institutions to exercise increasing social control over various groups of people for:m.erly ignored. For exa:m.ple, the blind often voluntarily seek out agencies for rehabilitation, but soon discover people who have been labeled blind are prevented from having any say about their disability. Those individuals with residual vision, the :most common form. of blindness, find that the ideology of the agency is such they are forced to think of themselves in the way the agency defines it. At so:m.e agencies the blind are compelled to act inco:m.petently and totally dependent in order to accommodate the agency's definition of blindness as an illness and life-long debilitating disability (Scott 1969). Other agencies dealing with the blind adopt the ideology that blindness is "emotional" crisis where one's personal and self-esteem. have been lost. 101

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Stress, then, is on psychological rather than physical adaptation to poor vision. This total psychological change" ideology contrasts with a third sort of ideology, represented by the Veterans' Administration, in which re-training of the blind is limited in time and the agency's expectation is that the individual will return to the normal community with the help of physical devices and some income maintenance. (Waxler 1981) Either way, from society's definition of impairment as a form of deviance, various social agencies find themselves functioning as agents of control. Both public health and psychiatry traditionally were concerned with the management of social behavior and found themselves functioning as such agents early on (Foucault 1965; Rosen 1972). Just as the prison and court systems exercise considerable control over the life path of criminals, agencies and rehabilitation programs influence the direction of and career choices of the disabled. This tendency to sanction deviancy through treatment as opposed to punishment increasingly contributes to the medicalization of behavior (Illich 1976; Conrad and Schneider 1980; Scheper-Hughes and Lock 1986). As a result, the disabled are viewed as people needing to participate in social organizations designed to 'rehabilitate' them. These agencies tend to exercise full autonomy when defining the disabled's role, generally one of deviancy. Such "treatment11 processes 102

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authenticates stereotypical behavior, and encourages the individual to behave in ways they have been defined. Friedson (1966) tends to agree with early labeling theorists that these rehabilitation institutions seem to be "organizing and stabilizing deviant behavior" rather than eliminating it. Such institutions gather marginal people into segregated groups, give them the opportunity to teach one another the skills and attitudes of a deviant career, and often provoke them into employing-those skills by reinforcing their sense of alienation from the rest of society (Erikson 1964:16). Social Control Sociologist Irving Zola (1982), himself impaired by childhood polio, points out that attitudes put forth by the able-bodied community label the disabled as socially in-valid. This attitude helps bar the disabled from full participation and membership within the society. Zola argues that when it comes to "the right to act sexy, get angry, be vulnerable, and have possibilities 11 the disabled are impeded by the larger society. Typically, the attitude concerning sex and the disabled is "they should have better things to do with their time". There is no recognition of sexuality as an important aspect of humanity. Zola contends that this may be because society feels uncomfortable picturing weak, sick or dying people 103

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having a need for sexual intimacy. Anger is another emotion denied the disabled. Zola associates this with socialization. The role of a disabled person is marked by two things: dependency and gratitude to care providers. Disabled people do get angry just like anybody else but we suppress our anger, I think, ten times more How often have you really seen a disabled person get super angry, compared to able-bodied? Now I'm talking about a disabled person that needs the dependency of -an able-bodied person for them to survive. (Anderson 1977:49) Obviously6 there are adverse consequences to being denied such a powerful emotion. Unable to vent ones' anger openly results in it either being dulled or turned inward. Anger which has been dulled shows up in that person appearing to be slightly distant. For those who turn their anger inward it can take the form of depression. Zola argues that depression may in -fact be a "socially induced defense" for those persons unable to express their anger. Besides being an effective means of social control, society is relieved from dealing with the depressed state of the individual because it has been deemed the personal responsibility of the individual. 104

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Society's gain by this process is obvious. since depression is considered the result of one's inadequate adaptation and resources, it can be more easily ignored as the individual's problem. (Zola 1982:222) The disabled are also constantly on guard against appearing to be too defenseless or weak. Unfortunately, their condition of dependence reminds them of their weaknesses. Zola admits that help is rarely refused the disabled, but each and every time its asked for they feel compelled to justify receiving it. Every request for help reminds them of their weakness, which in turn reminds them of their impairment effectively keeping them in their place. Not only are they dependent, but their dependence has been socially sanctioned. Finally, Zola asserts that there are two very different predicaments the disabled find themselves in. At one end of the spectrum there is the view by society that these individuals show little promise of success and should be institutionalized. The other end views the individual just like anyone else with unlimited possibilities. Both extremes create problems. Success stories about Wilma Rudolf and Franklin Roosevelt are used to show the disabled that hard work and perseverance are all they need to overcome and achieve any goal. The implication is that failure is the result of personal deficiency. These stories also are an effective means of 105

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control by the larger society by transferring all responsibility for failure to the individual. While some of the problems confronting the disabled are socially induced, the burden of deal ing with these problems is often placed squarely on the shoulders of the disabled. They are 'transformed from social problems to psychological problems. (Seidel 1984:48) Saragin (1975) contends that the amount of self depreciation and self-hatred should not be underestimated as an important means of social control. These public attitudes and beliefs are effective for keeping the individual in line, particularly since as outsiders they are eager to conform. The prejudice faced by the group operates to discredit them as socially relevant by excluding them from full participation. Kept from full participation and membership, they are "socially invalidated." The next section examines the formation and source of these public beliefs and attitudes. 106

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CHAPTER IX STRATEGIES FOR ADJUSTMENT There are many different strategies for adjusting to the stigma of disability. As revealed earlier, some embrace the role by making it the center of their identity, what Turner (1972) calls "deviance avowal. Others try to hide as much of their affliction as possible in an effort to project a more normal image. Most believe that until the individual stops denying and trying to conceal their impairment, normalization of relationships is impossible. This denial or 11disavowal11 is seen as a sign of maladjustment. Such behavior implies the individual has failed to recognize the reality of their situation. Such attitudes prevent them from recognizing genuine limitations or capabilities (Davis 1961). The competence of the individual is questioned because their behavior appears inconsistent with society's idea of reasonable conduct. Another fairly conventional adaptation is choosing to socialize only with other disabled individuals, finding comfort in an environment where their situation and appearance is no longer unusual. This strategy is useful in reducing some of the overpowering effects of

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disability. Most disabled however use a combination of strategies fitted to their own personal needs. While all these strategies are effective to some extent, it is not until the disabled individual starts to redefine who they are that the journey toward recovery truly begins. First they must realize that physically deviant does not necessarily mean socially deviant. Fighting the role society has given them however is no small task. The stigmatized individual is asked to act so as to_imply neither that his burden is heavy nor that bearing it has made him different from us; at the same time he must keep himself at that which ensures our painlessly being able to confirm this belief about himo Put differently, he is advised to reciprocate naturally with an acceptance of himself and us, an acceptance of him that we have not quite extended him in the first place. (Goffman 1963:122) The ambivalent signals society_sends often force them to confront both conscious and unconscious ''rules" of behavior designed to coerce the individual into admitting their stigmatized position in society. Saragin (1975) refers to this as the "routinization of deviance." The process facilitates the removal of any uncertainty in both the able-bodied and disabled individual's position within the culture. Such "routinization" also allows the disabled to ease into their designated roles thereby minimizing the amount of "role strain" discussed earlier. 108

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Adjustment to Loss Regardless of the trauma experienced by the disabled there are no findings to suggest that 11as a group11 they differ in their ability to adjust overall compared to any other group faced with similar losses. In general, the physically impaired make as healthy an adjustment to loss as do abled-bodied. The onset of disability does not automatically mean the individual will experience permanent psychological maladjustment. Shontz (1975) argues that the less complicated the causal link is between the impaired body part and the adaptive behavior adopted by the individual, the more predictable the behavior. For instance it is easier to predict that the paraplegic will experience great difficulty walking than to predict they will become embittered by the experience. As previously noted, there is a tendency for the abled-bodied to see the disabled as bitter and disappointed with their life prospects. Studies however show that most disabled reject this belief (Wright 1960: Cameron et al. 1973: Freedman 1978: Weinberg and Williams 1978). In one study by Cameron et. al. (1973) on populations of disabled and abled-bodied individuals an attempt to measure differences between the two groups, on life satisfaction, frustration levels and level of 109

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happiness, the only area of variation found was in levels of difficulty. The disabled group believed their lives to be more difficult and more likely to continue to be so. However, researchers found that difficulty did not increase the feeling of frustration with life, nor did satisfaction decline with an increase in difficulty. Freedman (1978) found similar results, that there was no connection between levels of physical limitation and happiness. When Weinberg and Williams (1978) posed the question: 11If you were given one wish, would you wish that you were no longer disabled?11 They found that only 49% of their study population responded in the affirmative. The remaining 51% said they would not want to eliminate their disability. In response to how they perceived their disability, 60% felt it was simply a fact of life, 50% saw their condition as inconvenient, 19% felt their impairment was a source of frustration 11% saw their situation as a terrible thing that had happened to them, and only 7% felt it was the worse thing that had ever happened in their life. Weinberg and Williams discovered that this belief that disability was riot the worst thing that had ever happened was felt by a ma1prity. This feeling was particularly strong when individuals felt their condition in no way interfered with their personal goals. Most individuals liked their 110

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"personal identity" and worried that any change in their condition might interfere with their personal progression. To date there exists no known evidence that various types of impairment correlate with particular personality characteristics (Barker and Wright 1954). This not to say that disability does not have a profound effect on the individual. But, as Wright contends, its effect is "not of a direct, consistent kind." Cash (1990a) concurs and points out that in general, disability affects the individual's body image, but this occurs at several different levels. Reactions to changes in the body appear to be more from the level of anxiety induced by the ordeal than from the location, severity or type of disability (Fisher 1986). Shontz (1975) argues that it would be more appropriate to view disability as facilitative rather than causal to psychological adjustment. While it is true that physical impairment influences individual body image, people react in numerous ways most of which has little to do with their particular disability. Theorists contend that how the individual perceives and interprets the environment influences behavior. This is one reason why many of the earlier theories on disability focused so strongly on the mental processes and personality constructs of the 111

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person. It was assumed that the greater the fit between psychological assessment and external reality, the better the adjustment; the poorer the fit, the poorer the adjustment. In recent years researchers have begun to examine causes of psychological maladjustment within the social and physical environment of the disabled. It is now recognized that external influences carry as strong an impact on behavior as internal ones and that environmental factors are just as important as the internal state of the individual. Differences in personality and role performance do occur among the disabled but again these differences are more likely to arise out of the social environment. Favorable adjustment demands that individual perceptions and interpretations be supported by external realities in order to bolster individual attempts at constructive behavior. Regardless of repeated attempts to adapt to their disability, if the social climate is such that it creates barriers that are impossible to overcome, the individual is still barred from making a healthy adjustment. Shontz (1975) contends that constructive adjustment demands that internal and external realities conform and are integrative. 112

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Stages of Adjustment In trying to understand the adjustment process that accompanies disability, we need to look at the work done by Kubler-Ross (1969). Although her discussion of grief centers around death and dying, theorists point out that the sy:m.pto:m.s of grief appear wherever there is loss. Orfirer (1970) hypothesized that individuals suffering loss of physical functioning have greater difficulty working out their grief due to loss than individuals facing death. She suggests this :may be due in part to death being a common experience shared by all of USo Disability on the other hand is m.uch less common. While physical i:m.pair:m.ent :may invoke sympathy most have no personal experience with it. This :makes the experience difficult to share. Kubler-Ross outlines several stages in the grief process which parallel the reactions a:m.ong the disabled to their loss. Grief is a reaction to loss as well as an integral part of the recovery process. Before the individual can accept loss they must first negotiate the grief which accompanies it. 0Repressed :m.ourning11 where the individual refuses to allow himself to grieve, keeps them. in a continued state of hostility and depression (Pincus 1974). One study by Heinemann and Shontz (1984) 113

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found that some form of expressed mourning is necessary in order for personal growth to take place following any "profound life crisis". After the initial shock, the terminally ill patient, much like the newly disabled, finds himself in a state of denial. There is disbelief that "this could have happened to me." Death like disability is seen as that which happens to others and "not to me." Frequently, the disabled find that they are encouraged to deny their grief and not to dwell on their loss. There is evidence that the medical community participates in this ritual of pretense (Blacher 1970). Adams and Lindemann (1974) argue that when family friends and the medical community hold out false hopes to the disabled, patients will cling to past lifestyles, making it even more difficult to develop coping strategies. After the initial shock wears off, however, there is anger. It is not unusual for the impaired individual to direct considerable hostility toward the able-bodied during this phaseo The third stage is followed by an interval of bargaining in which the patient attempts to negotiate a better "deal" with a higher power to correct or extend life. Finally, the entire process culminates in depression, where an overwhelming sense of loss dominates the life of the patient. Only after the successful manipulation of these 114

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four stages does the process of acceptance begin. This does not mean that the disabled individual prefers their new state or is resigned to it. Wright (1960) defines acceptance as the ability to see one's condition as The person may still strive to "improve the improvable" where improvement will facilitate certain aspects of his life. He may exercise daily to graduate from crutch-walking to cane-walking, but he will not abandon his crutches prematurely in order to be as much like a normal person as possible. He will not feel debased as a person and suffer the strains and shame of hiding and pretense. (Wright 1960:108) Accepting one's disability frees the individual of the resulting devaluation and allows them to pursue those activities in life which will allow them to grow and see themselves as valued and productive members of the society. Dembo, Leviton, and Wright (1956) outlined a process involving one's "acceptance of loss" in which loss referred to the absence of a valued possession. They concluded that in order to overcome the feelings of devaluation, four changes in the individuals value system has to occura The first involves an expansion of values. The disabled individual has to analyze and recapture values that at first seem to be missing. Through a process of realignment they come to understand their old value system by re-examining and maybe re-incorporating those values previously ignored. 115

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Faith, for example, may begin to make sense to the person; or he may begin to appreciate the value of brotherhood and service to others; or in case of asocial perceptions, he may begin to feel the value of selfishness, revenge, power. In any case, his horizon becomes structured with things that matter in one way or another. Although the lost values may still be important, a necessary condition toward overcoming devaluation has been realized. (Wright 1960:113) The second development involves a willingness to subordinate the significance placed on physique. The problem of a disordered physical appearance is helped by their efforts towards enlarging the scope of values. As mentioned before, this society places a high value on physical health and beauty. The impaired individual must re-evaluate this. The disabled must learn to value physical appearance less than their abilities. When values other than those of phys_icality are elevated in the life of the individual like kindness, tolerance, wisdom, cooperation, appearance is subordinated to issues of character. Third, the individual must find a way to contain the effects of disability. Much of the theory formulated on physical impairment has addressed the individual's inability to adjust in interpersonal relationships, such as Wright's theory of spread" where a single disabling attribute begins to affect other aspects of the 116

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individuals' physical and mental makeup. Suddenly the blind person who cannot see is perceived as being hard of hearing also. This tendency toward spread also appears when assigning traits to various groups. In one experiment two groups of high school students were given a photograph of the same individual with the exception that one group saw the individual portrayed as able-bodied and the second group saw a disabled person pictured in a wheelchair (Ray 1946). Both groups were asked to. list personality traits that might apply to their individual. Ray argues that the stereotypes expressed by the students evaluating the disabled individual reflected not only their views on disability but also their understanding of what it must be like. The students reasoned that the impaired individual would be more conscientious and get better grades but also feel more inferior and in general was more unhappy than the able-bodied individual. Katz and Braly (1933) reported similar effects in college students who endeavored to characterize racial groups by selecting traits from a list. He found that the students were comfortable in assigning characteristics even to groups with which they had no previous contact. Finally, the disabled individual must transform comparative values into asset values. Dembo, Leviton, 117

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and Wright (1956) define comparative values as those based on a comparison with a standard. The standard of judgement is often arbitrary. But within the judgement is an implied norm, as in the statement she is a good parent." If the individual is judged on how well the situational demands are met, not on a pre-determined standard, then the evaluation is said to be based on asset values. Wright illustrates with the example of a musical performance. If an individual is able to enjoy the performance of a friend without comparing it to the performance of another but relishes the performance for itself, they are said to be enjoying the performance based on the assets of the performance. Others may be more comparison minded, unable to enjoy the performance because it does not compare favorably to another's performance or measure up to a particular standard. If the disabled individual is able to see their atypical physique in the positive light of what they are able to do, not what they are unable to do, a psychological advantage is gained when physique has the function of an asset value, the person is able to appreciate those inherent satisfactions that are but disappointments the moment physique is taken as a comparative value. (Wright 1960:130) 118

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Generally, research and clinical practices are concerned with the effects of disability and the individual's immediate reaction impairment. Less time has been spent on documenting the insider's perspective. Researchers need to spend more time trying to understand just how the change in physique effects the total life situation of the individual (Shontz 1990). Because humans are remarkably resilient, reactions to anything can be both favorable or unfavorable. As we can see disability does impact the life satisfaction of the individual but less than previously realized. Positive adjustment appears to depend more on whether or not the individual feels their life has meaning. If they do, then.body disorder becomes and eventually stops overshadowing the individ1J.al's life (Shontz 1982). 119

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CHAPTER X CONCLUSIONS This thesis began with an interest in the abrupt transformation of the body. I wanted to understand the strategies used by the individual in adjusting to a disordering of physical appearance and its impact on body image. My focus was broadened after it became clear impairment involved not only physical disruption but a disruption of the cultural, social and psychological environment as well. Because personal identity and body image are so closely related disability often culminates in a crisis of personal identity. This state of crisis generally triggers a re-evaluation on the part of the individual of personal identity and self worth. The negative attitudes they encounter surrounding their appearance forces them to confront and question the public's attitude. More importantly, many of the public's assumptions result in barriers that severely affect the disabled's ability to interact socially. Since we all tend to define part of our self worth by personal appearance our appraisal is highly subjective. Most of us are unaware however how large a role the culture plays in this assessment. As we now realize both the self and the body are socially

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determined and association with others from the beginning was almost exclusively through the body. Hence body image is shaped throughout our lifetime. These first relationships have set the emotional tone we carry about self and body. The way in which the disabled view and assign meaning to their bodies ultimately informs their personal identity. Their physical impairment requires that they abruptly restructure a reality already in place. Trying to comprehend their difficulties is done best within a sociocultural context. By examining the ways in which they appropriate various physical and social attributes into a personal identity, we are given valuable insight into the effects of various cultural messages. This is true because while the individual is the primary interpreter of image, their interpretation has been informed by the culture. As the disabled individual progresses through life, others will continue to react to their appearance and influence feelings of self worth. Various cues pertaining to the body and its attractiveness can always activate a negative body schemata and generate a sense of devaluation. such cues contribute to the overall negative experiences in self image. Fortunately self image like the body image remains fluid and always subject to change. As we have seen for the disabled, the cultural 121

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messages received can be extremely debilitating. Generally the public's estimate of individual limitations and abilities are lower and more negative than is actually the Eventually the disabled come to understand there is little correlation if any between the public's evaluation and their own physical reality. Unfortunately, as an outsider how the disabled are allowed to interact with others is not always at their own discretion. Kreigel (1969) argues that the voyeurism various 11outgroups11 are subjected to is merely a method used by society to create distance from that which it considers aberrant. The intense scrutiny outsiders are often subjected to is an effective method of control. Who society scrutinizes and how individual groups are portrayed is central to the issues of power. In a sense, the type of attention we focus on groups labeled deviant highlight those aspects which reinforce our prejudices. Assumptions about what the deviant must feel like, what they should want, and who they are, support these preconceptions. Public reaction can be especially rigid and the disabled expend a considerable amount of their time and effort resisting such negative attitudes and beliefs. Like other stigmatized groups, they are faced with the same rigidity of interaction in their relationships and find themselves similarly excluded. 122

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Many of their problems stem from the ''disabled role" imposed by the culture, a role that carries with it the presumption of dependency and helplessness. The stigma attached to these assumptions contribute to their devaluation. By far these problems of social interactions are the worse. As a group they face serious social barriers which reduce their ability to participate fully in the community. Such barriers force them into a position of 0social invalidation" effecting their status as equals in the society. Many of the role and behavior conflicts they experience are the result of this culturally enforced deviance. While the disabled are intent on pushing for greater acceptance, they understand that change must first begin among themselves. Ultimately they will be held responsible for finding solutions to the problems of personal and social rejection. To reduce the effects of being disabled they must actively reject the assumption of limited ability espoused by the culture. This will be impossible until they re-order many of the values they themselves hold. Such changes are essential to re-integrating their dis-ordered physique into a viable personal identity. The recovery process demands it. Re-evaluation begi-ns with an examination of'their spoiled identity. For the most part 123

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this identity is due to set standards of health and beauty they no longer are able to achieve. Because their disfigurement represents a direct threat to society's ideals of proper appearance their isolation will continue until there is a change in the culture's understanding of this community. Critical to the control of self image is gaining access to public discussions. First the disabled must challenge the deviant role they find themselves in. Second they need to reduce the level of social isolation and awkwardness the 11disabled role11 has traditionallr imposed upon them. Like other stigmatized groups, they will find an improvement in image correlating with an increase in political power. Until such time they will continue to be portrayed by the 11traits of victimization associated with other minority groups (Allport 1954). This push for increased power has already begun. New self help organizations have sprung up all around the country for the expressed purposes of increasing the civil rights of the disabTed in housing, and education. These organ'izations help by offering explanations that reduce the self-blame and denigration and provide the needed social interaction which lowers the sense of l'ielplessness and despair. The tactics to fo_rce change are similar to those used by women and other 124

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racial and ethnic minorities in their moves for greater participation. Not surprisingly it is the fellowship with others like themselves that has done the most for raising the self esteem of the disabled individual. Many have found new leadership roles that have empowered them to organize and push tor the legislation needed to shape new.cultural understandings about their place in society.

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