Bryan S Turner. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
Introduction: Two Sociological Traditions
The issue of disability had been until recently somewhat neglected within both mainstream sociology (Ingstad and White 1995) and the humanities (Mitchell and Snyder 1997). In addition, classical studies of the cultural meanings of the body and disability, such as Henri-Jacques Stiker’s Corps infirmes et societes (1982), have not received the attention that they deserve in the conventional sociology of health and illness. Apart from influential works by Erving Goffman (1959, 1964) and Irving Zola (1982, 1988), sociology has contributed surprisingly little in terms of systematic theory and research to the study of disability. With respect to the study of mental health and social deviance, the tradition of symbolic interactionism has produced an influential literature that gave rise to radical criticism of taken-for-granted notions of normality and questioned the conventional division between norm, normal, and deviance (Williams 1987). Grounded theory has of course addressed important issues in the analysis of chronic illness (Strauss and Glaser 1975). In these studies, there is a common assumption that the human body can be read as a text that can disclose important facts about the person, and these corporeal texts provide significant information about the inner life of the individual (Skultans 1977).
Against conventional criminology, which accepted a narrow legal definition of crime and deviance, deviancy studies argued that deviance is “in the eye of the beholder,” and as a consequence, sociological research concentrated on the processes of stigmatization and institutionalization. If sociologists had an interest in the sociology of disability, it was somewhat submerged in studies of stigma and stigmatization (Goffman 1964). Symbolic interactionism developed an array of useful concepts around the idea of “discredited” and “discreditable” identities and studied the management of interaction between “normals” and the chronically sick and disabled (Davis 1963). In a similar fashion, disability in medical sociology has not been a major research interest. Studies of disability typically appeared in research on aging, where it was represented under the heading of “dependency” (Hocking and James 1993). In this setting, disability became associated with negative “images of ageing” (Featherstone and Wernick 1995).
However, this situation of relative scientific neglect changed in the 1980s with the growth of the disability movement and the political quest for social rights. As a result, there is greater public awareness that the prejudicial assumptions of the media and the deployment of a “disabling language” have the consequence of reinforcing negative stereotypes (Auslander and Gold 1999). It is now recognized that there is an ideology of “ableism” that has exclusionary social functions. As a result, writers such as Wendy Seymour (1989, 1998) have more systematically analyzed the negative consequences of the medicalization of patients and the medical model in rehabilitation in medical sociology. This emphasis on ability as an assumption of the dominant culture may be particularly true of American society, where, in the twentieth century, the “youth complex” (Parsons 1999) gave a salient position to individualism, achievement, and success. Youthfulness became the principal criterion for aesthetic judgments of the body. As a result, “ableism” underpins more general values about the cultural importance of sport, athleticism, and masculinity; that is, the notion of physical dexterity becomes an index of more general distinction. In contemporary consumer societies, the youthful and powerful body has increasingly become a sign of social worth; the body has become a principal theme in the notion of the self as a project (Giddens 1991). Against a background of relative neglect, there has been an emerging critical literature on disability that has had an effect on the social sciences for which the notions of disability, handicap, and impairment are now thoroughly contested (Barnes, Mercer, and Shakespeare 1999). These intellectual changes were indicated, to some extent, in disability studies by Zola’s (1991) critical lecture on “bringing bodies back in.” In this chapter, I attempt to show that, both politically and analytically, there is a growing appreciation of the body and embodiment in modern sociology and that the sociology of the body can make important contributions to the study of impairment and disability.
This chapter has three specific aims. The first is to develop a sociology of the body that combines both an appreciation of the phenomenology of the body in the everyday world and an awareness that the body is constructed as an object of professional concern. The chapter examines both the subjectivity of the “lived body” in the phenomenological tradition (O’Neill 1972) and the external social and political structures that regulate, produce, and govern bodies and populations in the tradition of Michel Foucault (Burchell, Gordon, and Miller 1991; Jones and Porter 1994). The term embodiment attempts to describe the subjectivity of the lived body in the life-world in the phenomenological tradition, whereas the term governmentality attempts to describe the production of the body as an object of professional practice in the poststructural tradition. The second aim is to examine the notions of vulnerability and contingency in relation to the idea of the embodied self to further disrupt the idea of “natural” disability. Finally, the chapter considers how a sociology of the body can provide an analysis of human and social rights that is grounded in an understanding of the social ontology of human beings as both frail and vulnerable. These three objects can be regarded as in fact one: to undertake a critique of the Cartesian dualism of mind and body to situate the sociology of the body at the center of disability debates.
In exploring the relevance of sociology to an understanding of disability, we should therefore examine two versions of the sociology of the body in contemporary social thought. The first is the debate opened up by the critical writings of Michel Foucault (1926-1984) about the social production of the human body that leads into an analysis of how disability is socially constructed. Such an approach is radical in the sense that it treats, for example, the rehabilitation process as normalization, which is how the “disabled body” is discursively produced, governed, and regulated. This Foucauldian approach has in recent years been increasingly summarized as the study of “governmentality” (Rose 1989:5). This concept refers to the development of micro-systems of social regulation that exercise normative control over individuals and populations. In this sense, rehabilitation is a form of governmentality that orchestrates various medical and welfare practices that aim to create the rehabilitated person. Another illustration is the spread of dietary practices in which “diet” as a “government of the body” brings about a detailed self-regulation of the body to exercise more control over the self (Turner 1982). More broadly, this “social constructionist” approach avoids the difficulties of “essentialism.” There are many versions of the constructionist argument, some of which converge with philosophical pragmatism in which scientific facts are produced rather than discovered. As Richard Rorty (1999:xvi) has argued, relativists are people who believe that truths about the world are produced for pragmatic reasons and not discovered. For example, social constructionist approaches to the body argue that the ways in which we categorize and classify bodies are characteristically products of political struggles within the field of the medical professions. For example, Foucault (1980) has shown that the absolute binary division between the sexes emerged from bureaucratic and political conflicts between professionals, where individuals of indeterminate sex nevertheless have to be unambiguously ascribed to a specific category, either male or female. The history of gender classification shows that the allocation of individuals to positions within the gender map is arbitrary and that the map itself changes and evolves over time (Laqueur 1990). In a similar fashion, social constructionism challenges the assumption that there is a fixed and unchanging essence of human disability and asserts, by contrast, that disability is a not a phenomenon with shared characteristics across cultures and across time but is a product or consequence of medical classification. The paradox of the social constructionist position is that the specific character of embodiment in the everyday lives of people who are regarded as disabled disappears because the “body” appears as only a phantasm that is produced by the discourses and practices of “ablement.”
The second possibility is the elaboration of the phenomenology of the body through the study of embodiment in everyday life. This perspective has its intellectual origins in the philosophical tradition of Maurice Merleau-Ponty (1907-1961). The phenomenology of the body keeps the body in focus as an object of intellectual inquiry, but it treats as problematic the relationship between the official objective body of rehabilitation and the subjective body of personal experience. It recognizes the complex interplay between the objectified body of medical discourse, the phenomenal body of everyday experience, and the body image that, as it were, negotiates the social spaces between identity, experience, and social relationships. Chronic illness presents specific interactional problems in which the individual must negotiate a new set of everyday practices that can manage the tensions between the self, the experience of embodiment, the biological changes, and the medical appropriation of the body. These issues have been subtly explored by Monks and Frankenberg (1995) in terms of the experience of multiple sclerosis in which the expectations of time for the self have to be adjusted to the temporal demands that are imposed by the biological body. Erving Goffman’s (1964) study of stigma might be a useful additional illustration of this line of argument. A stigmatized and stigmatizing body has to be managed in everyday life in terms of managing a body image in an interactional context, in which a negative body image gives off information that may be damaging to the self. The presentation of the self in everyday life (Goffman 1959) requires successful management of the body and, more critically, management of the body image if the self is to avoid the existential damage that follows from embarrassment. The interactional problems that arise with stigma are carefully explored by Goffman, who recognized that individuals may or may not invest in action; there are always opportunities of “role distance” that involve subjective withdrawal from interaction.
There has been much debate as to whether Goffman’s approach involved a cynical assumption that there is no true or continuous self, only an endless and playful presentation of masks. The phenomenology of the body assumes that the continuity of the self across space and time requires the continuity of embodiment. Without this continuity of embodiment, how could we be effectively recognized over time? For phenomenologists, the notion of a continuous self is thus predicated on the idea of embodiment, and therefore it argues that any sharp differentiation of mind and body is inadequate as a basis for understanding the self in society. Who I am cannot be separated from how I am embodied, and thus any traumatic disruption of my body through accident or disease brings about disruptions to the self. Parkinson’s disease threatens to disrupt the self in everyday life because the victim of the disease may be inadvertently classified as an alcoholic.
The phenomenological approach is a crucial challenge to the assumptions of the medical model, which assumes a clear division between mind and body, rejects the subjective experience of the patient as irrelevant to treatment, and approaches the body as simply a collection of parts. One crucial problem with the medical model is that in the case of amputation, for example, it treats limbs as merely parts of the physical organism rather than as components of the embodied self. In response to patients who suffer from phantom limb experiences, the medical model provides a criticism of the patient’s “failure” to adjust in terms of the dominant values of American society—namely, individualism and pragmatism (Deegan 1978). Contemporary philosophers, inspired by the work of Martin Heidegger, have argued that to transcend existing dualities and develop a more adequate understanding of the embodied self, we need “a conception of a single entity that is at once a self and a body” (Olafson 1995:199). In this chapter, I propose that the idea of “embodiment” is such a conception.
These two traditions (poststructuralism and phenomenology) are normally regarded as mutually exclusive. Foucault rejected both phenomenology and existentialism to develop an understanding of social and cultural relationships as products of discourses. The result was to expunge an interest in the actual phenomena of the experience of everyday life. Foucauldian poststructuralism has examined the enormous variety of discourses by which “bodies” have been produced, categorized, and regulated (Foucault 1981, 1987, 1988). At the same time, it denies the sensuous materiality of the body in favor of an “antihumanist” analysis of the discursive ordering of bodily regimes. Such an approach rejects the commonsense assumption that the body (in the singular) can have any unitary coherence or uniform significance. Foucault’s work is briefly summarized in his own words from Technologies of the Self (Martin, Gutman, and Hutton 1988:11)—“All of my analyses are against the idea of universal necessities in human existence. They show the arbitrariness of institutions.” His legacy has produced a range of historical inquiries into the government of the body resulting from institutionalization. By contrast, the phenomenology of the body examines the ways in which the everyday world is organized from the perspective of the embodiment of human beings. Merleau-Ponty’s (1962) approach to perception and understanding argued against any separation of mind and body; our perceptions of the world are always grounded in the relationship between our embodiment and the world.
Although these two traditions are typically regarded as incommensurable, this chapter develops an interpretation of the body that seeks a theoretical rapprochement between Foucault’s poststructuralism and Merleau-Ponty’s phenomenology to bring out the positive political and theoretical benefits of combining both positions for an analysis of disability (Turner 1992, 1995a, 1996). An adequate sociology of the body in disability studies must examine different levels of disability—namely, how individuals experience disability, the social organization of disability in terms of sociocultural categories, and the macro or societal level of welfare provision and the politics of disability (Barnes et al. 1999:35). On one hand, Foucault’s idea of normalization is useful in understanding how medical interventions standardize human experience. On the other hand, a phenomenology of the body provides a basis for a better appreciation of the actual experiences and subjectivities of embodiment. This chapter is consistent with the position taken by Susan Reynolds Whyte (1995), who has criticized the tradition of Foucault and Stiker as frameworks for analysis of individuals’ experiences of misfortune, disease, disability, and so forth because “discourse analysis does not leave much room for their subjectivity and agency” (p. 276). She makes the important point that the ethnographic tradition of anthropology has therefore much to offer to the exploration of an issue (the subjective experiences of the everyday world) about which discourse analysis is wholly silent.
The argument here claims that it is possible to combine (what we can call) ontological foundationalism with cultural constructionism, and such a combination, particularly in medical sociology, can have a number of theoretical benefits. It is important to distinguish between epistemological questions that relate obviously to questions about knowledge and understanding and ontological questions that relate to problems about the nature of the existence of things. By combining these two questions—namely, foundationalism and constructionism—we can recognize a number of logical possibilities. The two extreme positions assert either that the body is socially produced (radical constructionism) or that it is biologically given (positivism). In contemporary social theory, the most commonly held position is that of radical constructionism. This tradition has been significantly influenced by the writings of Foucault, postmodernists, feminists, and epistemological relativists. It has also been attractive to political activists in the disability movement, precisely because it recognizes the contingencies of social responses to disability—namely, the arbitrariness of institutions.
It is possible, however, to identify some traditions in social theory when social construction is combined with ontology. For example, in sociology, the work of Peter Berger and Thomas Luckmann was particularly important in the development of the theory that the social world is constructed by the endless activities of social agents. Indeed, their book, The Social Construction of Reality(Berger and Luckmann 1966), was a major development in the modern sociology of knowledge and was welcomed as a particularly radical turn in the history of sociology. Their sociological position was actually based on the work of Arnold Gehlen, who attempted to integrate biology and sociology. Gehlen (1980, 1988) argued that human beings are “not yet finished animals”; that is, human beings are biologically ill equipped to deal with the world because they have no specific instinctual basis and depend on a long period of socialization to adapt themselves to the world. Gehlen argued that to cope with this “world openness,” human beings had to create a cultural world to replace their instinctual world or at least to supplement their instinctual world. Berger and Luckman developed this perspective to argue that because human beings are biologically underdeveloped, they have to construct a social canopy around themselves to supplement their biology. Because human beings are “unfinished,” they are vulnerable and require the support and protection of institutions to cope with the exigencies of life.
It is important to note, therefore, that one of the most useful contributions to the debate about social constructionism was in fact based on a foundationalism ontology. This theoretical combination may explain why the reception of Berger and Luckman’s (1966) approach was characterized by a profound ambiguity. Ontological foundationalism often appeared to point to a rather conservative theory of institutions, while the social constructionist position in the sociology of knowledge implied a profound criticism of the taken-for-granted nature of social institutions. This ambiguity in the work of Berger and Luckman should help us identify the political nature of constructionist theories. They arise in contexts within which certain categories of behavior, such as homosexuality, have become highly politicized. They make the somewhat obvious point that while individuals may not fully accept the application of a stigmatized identity, such individual discrepancies only become politically important once a group of individuals presents a counter definition of social reality. This is evident in the historical case of the emergence of leper colonies (Berger and Luckmann 1966:184-90). Through such collective redefinition of deviance, individual cases of abnormality are transformed by acts of collective reorganization of social definitions of normality. Similarly, the idea that anorexia is socially constructed typically arises when feminists want to deny the importance of physiology in social behavior. The same issue is at stake in the political debate around disability, in which the social construction of disability is emphasized (in the words of Foucault) to show the arbitrary nature of the institutions that surround, produce, and maintain disability as an exclusionary device. “Disability” is, in terms of the sociology of knowledge, not unlike “gender” in that its very existence has been questioned by the politics of constructionism. It is for this reason that the UPIAS (Union of the Physically Impaired against Segregation) model, which defines disability in terms of citizenship (as a loss of opportunities), is appropriate for advocacy purposes. In this perspective, it is society that “disables people with impairments; disability is imposed on people” (Bickenbach et al. 1999:1176).
Social constructionism is probably best regarded as a historical and sociological account of how certain conditions (disease, sickness, impairment, or disability) become accepted over time by the medical profession and the wider society and how that historical process is shaped by political struggles and economic interests. The historical reception of repetitious strain injury is probably a particularly good illustration of the idea that a nonspecific discomfort or condition can be transformed over time into a distinctive medical condition (tenosynovitis) as a result of a successful political lobby by the victims of the condition against employers and insurance companies (Turner 1995a:14-15). Phenomenological studies offer a rich tradition of research that can provide a detailed understanding of the everyday experiences of disability (Nettleson and Watson 1998; Toombs 1995; Williams 1984). As I have suggested, the main problem with constructionism is that it is either unable or unwilling to give an account of the experience of the condition, which is socially constructed, and the subjective consequences of disabling labels. Finally, an understanding of this shared phenomenology of human embodiment can transcend the trap of cultural relativism and suggest how a human and social rights discourse can overcome the able-disable dichotomy.
These examples from the work of Berger and Luckmann (1966) are intended to demonstrate two (possibly obvious) issues: (1) that a concern for the phenomenology of individual experiences of illness does not preclude the development of a political agenda for collective responses to inequality, and (2) as a result, it is a short step between the phenomenological description of chronic illness to an account of social rights. My concern for a sociology of ethics and politics is connected with a desire that sociology might make a contribution to the study of human rights through the concept of embodiment (Turner 1993, 1997a, 1997b, 1997c). The ontological theory that lies behind this discussion of embodiment attempts to develop a general sociology that has three components—the frailty (of human beings), the precariousness (of institutions), and the interconnectedness (of social life). In this respect, my approach has been influenced by the existentialist reflections of Oliver Sacks (1986) in A Leg to Stand On and by the notion of “the pain of vulnerability” in the social philosophy of Arthur Kleinman (Kleinman 1988; Kleinman and Kleinman 1996). The analytical goalis to produce an ethics of embodiment through an understanding of the debates on chronic illness, impairment, and disability.
Impairment and Disability
Many of the philosophical issues discussed above have been effectively identified by Hughes and Paterson (1997) in a valuable article titled “The Social Model of Disability and the Disappearing Body.” Their argument is that the disability movement has been based on the creation of a “social model” of disability, which is a direct challenge to the medical model. A medical model regards both disease and sickness as medical conditions that are produced by specific entities (such as a virus) and assumes that the role of medical intervention is to control the symptoms of a disease and, where possible, remove their causes. It does not attend, therefore, to the subjective worldview of patients as constitutive of the condition and does not recognize the role of politics and culture in shaping human suffering (Turner 1995b). Hughes and Paterson note that by “focusing on the ways in which disability is socially produced, the social model has succeeded in shifting debate about disability from biomedically dominated agendas to discourses about politics and citizenship” (p. 325). However, this displacement is made possible by a division between the concepts of impairment and disability that is not satisfactory. By defining disability as a social and political condition of exclusion and impairment as a medical category to describe an absent or defective limb, organism, or mechanism of the body, the social construction of the disabled body confines impairment to a medical framework. While a constructionist interpretation of the body liberates disability, the medical model still dominates the field of impairment.
The result of postmodern and poststructuralist theories is that the palpable, living body disappears because postmodern perspectives preclude the possibility of an “ethnography of physicality” (Shakespeare and Watson 1995:16) that would be highly valuable to the disability movement. Indeed, one can argue that it would be difficult to imagine what, in general, a postmodern ethnographic methodology would look like. At best, it would be concerned to decode the images of disability in modern societies, and in that respect it is simply a branch of cultural studies. By contrast, one illustration of an ethnographic approach to the physicality of the impaired body can be found in Wendy Seymour’s moving account of the experience and consequences of spinal cord injury. Her research represents an intellectually creative approach to the injured body that transcends the separation of the objective and subjective body in the clash between the legacy of Foucault and Merleau-Ponty. Remaking the Body (Seymour 1998) and Bodily Alterations (Seymour 1989) are two studies of trauma that open up creative directions in the study of disability. Her analysis of disability closely follows the distinction between the experience of embodiment, the physical body, and the medical or objective body (Frankenberg 1990). Employing qualitative data from interviews, Seymour examined the social construction of the body in a literal sense—namely, how bodies are remade following trauma, whether by accident or disease. The posttraumatic rebuilding of the body also involves, in the language of Anthony Giddens (1992), a “second chance” at refashioning the self. This remaking is not merely a discursive process; it involves, following Merleau-Ponty, the reconstruction of the lived, sensual body. This remaking of the body also takes place within the professional “gaze” of rehabilitation, which holds out the typically false promise of normalization, that is, the production of a socially “normal” body—young, athletic, and sexual. It is not enough to return to society via rehabilitation; the rehabilitated body has to be discursively normal. Seymour’s ethnographic study shows how, through endless medical encounters in the everyday world, these individuals are coached and coaxed into the vestiges of normal and routine social roles.
One solution to these conceptual difficulties with both the medical and the social model of disability has been to propose a synthesis of the medical and social processes—namely, a biopsychosocial model. Such a model has been incorporated into the ICIDH-2 (International Classification of Impairments, Disabilities, and Handicaps) proposals of the World Health Organization (1997), in which every dimension of disablement is analyzed in terms of an interaction between the individual and his or her social and physical environment. The model assumes that different types of intervention are appropriate at different levels. While medical intervention may be appropriate in relation to the specific features of impairment, sociopolitical action is appropriate at the level of the disability. Although the model has been criticized by movement activists because it labels individuals in terms of an official and professional system of classification, it is claimed that the model transcends the limitations of both the social and the medical models and holds out the promise of a more universalistic approach (Bickenbach et al. 1999). Although the idea of a synthesis is attractive, to argue that the biological should not be dismissed is quite separate from an account of human embodiment. From the perspective of sociology, “the body” is not in some elementary framework “the biological.” The point of the sociology of embodiment is to go beyond a Cartesian medical framework in which mind-body dualism is replaced; there is little advantage in substituting a psychology-biology dualism for the traditional mind-body dualism.
Embodiment, Self, and Society in Western Cultures
Contemporary studies of the phenomenology of impairment and disability serve to further question the legacy of Cartesian dualism. The sociology of disability demonstrates the limitations of a simple mind-body dualism and takes us into a discussion of the embodied self and the disruptions of everyday life. The nature of corporeality and embodiment leads directly into the question of the self and the social actor (Charmaz 1994; Deegan 1978; Oberg 1996). The characterization of the social actor has been an issue that has dominated the entire development of the social sciences. It involves questions about the rationality of social action, the importance of affective and emotional elements, and the role of symbol and culture in the constitution of the social self. Disability, while socially produced by systems of classification and professional labels, also has profound significance for the self because who we are is necessarily constituted by our embodiment. Because our biographical narratives are carried in our embodiment, disability has to be mediated by its meaning for the self. The day-to-day difficulties of mobility and autonomy are not, as it were, merely accidental features of everyday life of the chronically ill, the disabled, or the elderly; they actually constitute selfhood by transforming the complex relationships between the self, body image, and environment. These disabilities, for instance, impinge on the everyday capacity of individuals to make and sustain intimate partnerships; in this respect, the problems of sexual intimacy in old age and in chronic illness are not dissimilar (Riggs and Turner 1999).
This issue of the embodiment of the social actor has also to be cast in a distinctively historical context; we are obliged to explore the historical setting of the corporeality of the social self. Sociologists are not only concerned with the phenomenology of the embodied self but also must be aware that in certain historical periods, the relationship between body and society is very different. Therefore, the debate about the relationship between selfhood and disability can take very different forms in different cultural and historical settings. In contemporary Western societies, there is, within the context of an individualistic and hedonistic culture, an emphasis on youth, youthfulness, and activity. For example, in critical gerontology, there is an important emphasis on activity and engagement against the idea that successful aging requires disengagement (Phillipson 1998:15-16). This emphasis on the youthful, active, and slim body is connected with the importance of reflexivity as a component of modernity. Recent writing on the body has indeed associated the emergence of the debate about the body with the growing importance of the postmodern or reflexive self in high modernity. For example, Anthony Synnott (1993) has asserted that “the body is also, and primarily, the self. We are all embodied” (p. 1). In a similar fashion, Chris Shilling (1993), following the approach of Anthony Giddens (1991, 1992) to contemporary forms of intimacy, also argues that the project of the self in modern society is in fact the project of the body; “there is a tendency for the body to become increasingly central to the modern person’s sense of self-identity” (p. 1).
The transformation of medical technology has made possible the construction of the human body as a personal project through cosmetic surgery, organ transplants, and transsexual surgery. In addition, there is the whole panoply of dieting regimes, health farms, sports science, and nutritional science that are focused on the development of the aesthetic, thin body. Both Synnott (1993) and Shilling (1993) have noted that modern sensibility and subjectivity are focused on the body as a representation of the self, such that the body is a mirror of the soul in contemporary society. This involves a profound process of secularization whereby diet is transformed from a discipline of the soul into a mechanism for the expression of sexuality, which is in turn the focus of modern selfhood (Turner 1996). Whereas traditional forms of diet subordinated desire in the interests of the salvation of the soul, in contemporary consumer society, the diet assumes an entirely different meaning and focus—namely, as an elaboration or amplification of sexuality. The project of the self is intimately bound up with these historical transformations of the nature of the body, its role in culture, and its location in the public sphere. Although sociologists have invested much effort into understanding cosmetic surgery as a technique for refashioning the self through body transformations, there is, as we have noted in the work of Wendy Seymour (1989, 1998), an important system of rehabilitation in contemporary medicine and social work that contributes both to rebuilding the self and to normalizing the body. Given this emphasis on the body beautiful in the commercial culture of contemporary capitalism, there is an important “aestheticization of everyday life” that puts considerable social pressure on conformity with these health norms. Both old bodies and impaired bodies need rehabilitation to conform to the values of youthfulness, beauty, and athleticism (Featherstone 1991:15). In contemporary America, even smallness has become a medical condition, thereby preventing the election of small men to the presidency; the size of the presidential role requires the presence of a large and handsome body. The word ailment is derived from the Old English egl(i)an, indicating “troublesome” (egle) and, in its Gothic form, “disgraceful” (agls); an ailing body is therefore without grace (charisma). A charismatic leader should be, whenever possible, equipped with a graceful body thatas a result indicates the existence of a charismatic power.
To clarify these debates, we need to develop an adequate definition of embodiment or at least to list its necessary components. It is interesting that despite the enthusiasm for the development of the sociology of the body, we do not as yet possess any adequate definition. First, following Norbert Elias’s (1978) notion of the social as process, it is important not to reify the term but to treat embodiment as a process—namely, the social processes of embodying. Embodiment is the effect or consequence of ongoing practices of what we might call “corporealization.” In this respect, it requires the learning or mastery of body techniques (Mauss 1973)—walking, sitting, dancing, eating, and so forth. Embodiment is the ensemble of corporeal practices, which produce and give “a body” its place in everyday life. Embodiment locates or places particular bodies within a social habitus. In this respect, embodiment could be readily described in terms of Pierre Bourdieu’s (1990) notions of practice, disposition, and habitus. Embodiment is an accomplishment by which a social actor embraces a set of dispositions, practices, and strategies and, as a result, comfortably occupies a unique habitus. Second, embodiment is about the production of a sensuous and practical presence in the life-world. Embodiment is the lived experience of the sensual or subjective body, and it is, in this sense, very close to the notion of practice (praxis) in the early philosophical anthropology (Csordas 1994). The sensual, lived body is a practical accomplishment in the context of everyday social relations, but it is also the active shaping of the lived world by embodied practices. Third, embodiment is a social project in the sense that it takes place in a life-world that is already social. Embodiment is not an isolated or individual project; it is located within a social and historical world of interconnected social actors, within a social network. The phenomenology of the lived body is not grounded in any individualistic assumptions; on the contrary, it treats the body as necessarily a social product. Finally, while it is the process of making and becoming a body, it is also the project of making a self. Embodiment and enselfment are mutually dependent, interdependent, and reinforcing projects. The self involves a corporeal project within a specific social nexus where the continuous but constantly disrupted self requires successful embodiment, a social habitus, and memory.
Body and Time
Although embodiment is a social project that is routinely accomplished (with comfort or ease), it also has its own specificity (Turner 1998a). My embodiment is uniquely accomplished within wholly routine and predictable contexts. We can express this paradox of particularity and uniformity in terms of the relationship between sociology and ontology in a formulation taken from Martin Heidegger’s (1958) The Question of Being. On the social or horizontal plane, an individual is routinely defined by a series of social roles that specify a standardized position in the public world of the economy and society. There is also an ontological plane, which forms a vertical axis, that is defined by the finite and unique embodiment of a person. The horizontal social plane is the precarious world of the social system; the vertical plane is the world of embodied frailty. In this sense, we might argue that sociological (horizontal) analysis is concerned to understand the contingent and arbitrary characteristics of social being, while philosophical (vertical) analysis attempts to grasp the necessities of our human being. This formulation can be adopted as a further perspective on Foucault’s notion of the arbitrariness of institutions. The horizontal planes of social relations are indeed arbitrary; they are also precarious. The institutions of disability and rehabilitation have been radically transformed in the late twentieth century, and the traditional systems of rehabilitation no longer hold sway. However, on the vertical plane of human existence, certain necessities are concerned with aging, disability, and dependency.
In many respects, Gay Becker’s (1997) Disrupted Lives perfectly captures the relationship between these vertical and horizontal relationships; it addresses a carefully formulated theoretical problem, which concerns the relationship between the body, metaphor, and personal identity. The notion of “disruption” leads us toward a reflexive uncovering of the frailty of our lives and the precarious character of the institutions that underpin them. Becker’s book is composed of five separate but interconnected studies of infertility, midlife crisis, strokes, old age, and chronic illness. Disrupted Lives can be understood as a further reflection on the problems of the Cartesian legacy of the mind-body dichotomy. Both sociology and anthropology have demonstrated that identity is fundamentally embodied because subjective and objective identity cannot be easily separated from embodiment. It follows that “self” is not an enduring or stable fact but changes with aging, the life course, and the disruptions of illness. Hence, radical disruptions to self occur as a result of traumatic illness, which often breaks our relationship with significant others, reorganizes our life-world, and threatens to destroy the comfortable relationship between self, body, and others. In North America, where there is an important emphasis on youth fulness, activism, and independence, disruptions to everyday life from accident, chronic illness, and aging represent a profound challenge to the sense of self-identity. Talcott Parsons’s (1951) sick role defined sickness in terms of inactivity; to be sick was essentially not to be at work. In a society that values activism, chronic illness and impairment are in this sense deviant. Parsons’s model of the sick role was implicitly about the occurrence of acute illness and does not easily fit the experience of chronicity. As such, the Parsonian model implies that disability is a form of more or less permanent sickness and thus of permanent stigmatization. When the disruptions of life from sickness and disability transform the body image, then other social actors experience disruptions to the social routines of interaction. According to Goffman’s (1964) analysis of stigma, impairments create systematic representational ambiguities.
Becker (1997) argues that metaphors of illness and impairment play an important part in helping people to make sense of these unwanted discontinuities. Metaphors help us to understand, but they also have therapeutic qualities; as a result, narratives of disruption constitute moral accounts of people’s lives. Metaphors are the cultural vehicles that express the values that make life meaningful and coherent. Thus, narratives of healing are part of the process of healing. Given the importance of activism and individualism in American culture, healing narratives are typically structured around themes of disruption and the assumption of personal responsibility. Power relationships are crucial to the negotiation of these narratives. The interaction between therapist and patient in the rehabilitation process also involves power. The hierarchical structure of power in relation to medical knowledge is fundamental to questions such as the following: What metaphors are available to patients, and how are they legitimized? Can deviant narratives of illness subvert medical power? Because meanings and metaphors are negotiated in medical settings where resources are unequal, the critique of the medical model has been central to the disability movement.
There is a submerged theme to Becker’s (1997) study that requires special attention and suggests a radical alternative to the conventional perspective on the body-self relationship. The stability of everyday life requires the presumption of a continuous and reliable self, and hence we assume that disruptions are exceptional interventions within this normality. For interaction to take place at all, one must be able to make assumptions about the continuity of an embodied self through time and space. Toward the end of her study, Becker came to the conclusion that “continuity is an illusion. Disruption to life is a constant human experience. The only continuity that has staying power is the continuity of the body, and even that is vulnerable” (p. 190). Hence, the everyday world involves a constant struggle to sustain the illusions of order and continuity against a backdrop of persistent and ineluctable disorder. Metaphors, which mediate between the self and chaos, provide the building blocks of cultural meaning. The social world has to be constantly socially constructed against the disruptions that threaten the continuities of the identities of social actors.
Any account of disruption has to take into account the biography of the individual in terms of whether trauma occurred to a person previously regarded as whole and healthy or whether impairment has its origins in the fetus—namely, whether a person is born with an impairment. In the medical history described by Geyla Frank (1984, 1986), Diane DeVries was born without fully developed limbs and therefore had no memory of the “missing limbs.” This fact explains why she responded to the notion of being an amputee with amazement. In fact, she came to think of herself as an image of beauty—an embodiment of the limbless Venus de Milo. Similar experiences of the phenomenology of the body would characterize people who are thalidomide victims because they have no experience of a different type of body. We need to make an important distinction in studies of disruption to life involving impairment at birth, accident, and processes such as aging. These three contrasting situations have an importance for any sociological understanding of disruptions to the self.
In conclusion, the diseases and discomforts of human beings have their own peculiar temporalities and rhythms—onset, duration, crises, and terminations are different for different diseases in relation to different patients. Some are slow and insidious, others confronting and quick. Oliver Sacks (1976) has given us poetically inspired accounts of the rhythms of chronic sickness and the capacity of drugs to bring about personal awakenings. The temporal dimensions of disease have different implications for the self. The same is true for different impairments and disabilities. We need to distinguish between people who are born with impairment and who have no pre-impairment experience of the embodied self. Second, we can identify a range of disabilities that are consequences of a traumatic event, such as a traffic or sporting accident. In this case, the assault on the integrity of the embodied self is massive. An individual with spinal injury has a clear phenomenological experience of a pre- and post-traumatic personality. The rhythm of disruption is total and abrupt. In Seymour’s (1989, 1998) terms, such accidents require a reconstruction of self and body. Third, we may distinguish a slow and crippling ailment such as rheumatism, in which the transformations of embodiment are painful but uneven and unpredictable; however, the long-term outcome may be immobility and marginalization. Finally, forms of disability and impairment accompany the aging process in which the loss of mobility, independence, and status is profound and inevitable. However, with aging, the loss of mobility and autonomy is an expected, anticipated, and possibly normal outcome of aging (Schieman and Turner 1998).
Conclusion: Vulnerability and Rights
My discussion has involved an account of how the notion of embodiment can contribute to the phenomenology of disability to provide a sociology of rights that is grounded in the notion of a shared frailty. To pursue this line of argumentation, I need to provide an elaboration of the idea of ontological insecurity, which has the following components. First, there is the assertion that we are biologically frail. Both impairment and aging are important illustrations of this position. While of course age and aging are culturally defined, it is also the case that we are subject necessarily to an aging process. This process is individually variable, but our immune systems tend to decline with age, and we are more exposed to physical dangers as we grow older. Most people will experience some form of disability in old age, and there is a definite experience of a loss of mastery after 60 years (Mirowsky 1995). Because there is a scarcity of resources, there is a social conflict over the allocation of resources to the elderly and the impaired, which, in a state of nature, means that life is “nasty, brutish, and short.” In this Hobbesian world, the state is the product of a contract between rational actors to protect their collective security. In my sociology version of social contract theory, embodiment for human beings creates insecurity because we are all prone to illness, aging, and disability. We can derive the need for (protective) human rights from this Hobbesian notion that human beings are biologically frail, they are socially vulnerable, and their lives are politically precarious. Human beings as embodied creatures are subject to illness and disease, aging and disability, and suffering and mental decay (through dementia, Alzheimer’s disease, Parkinson’s disease, etc.). Human beings have to manage the problem of their “ontological security” (Giddens 1991:44) through the development of everyday routines, but in my argument, these routines are prone to fail because our social and political world is precarious. Daily routines and norms are constantly disrupted because our embodiment means that we are exposed to physical risks that cannot be easily predicted.
In addition to being biologically frail, we are also vulnerable at a social level. Once more, the aging process provides a clear illustration of the issue. As we age, in biological terms, we are exposed to social vulnerability because old age is, particularly in modern society, a period of increasing isolation and loneliness. We cannot provide easily for our own wants and needs, and we become dependent on the family and kinship networks. With growing longevity in societies where traditional family systems have broken down, the elderly become increasingly dependent and exposed to marginalization and social abuse. Biological frailty and social vulnerability tend to reinforce the problems of marginality and isolation that the sick, disabled, and elderly experience.
In addition to the human body being fragile and frail, we live in a societal environment that is essentially precarious, and this precariousness is an inevitable consequence of the nature of power and its investment in the state. Powerful institutions such as the state, which are set up according to social contract theory to protect the interests of rational actors, can of course function to terrorize and dominate civil society. While strong states may protect society from civil wars, they can, for that very reason, be a danger to the very existence of citizens. By precariousness, I also mean that institutions, which are rationally designed to serve certain specific purposes, may evolve in ways that contradict these original charters. Social life is essentially contingent and risky; individuals, even when they collect together for concerted action, cannot necessarily protect themselves against the vagaries of social reality. Following through with the theme of aging, we are precarious at the societal level because we cannot effectively control macro-policy decisions about issues such as compulsory retirement, mandatory superannuation contributions, inheritance taxation, health coverage, and so forth.
While social theorists might grant that social reality is precarious, the argument that human beings are universally frail may appear to be controversial and contentious. There are a number of problems here. If human beings are frail by definition, then frailty is variable, and my argument could easily be converted into a Darwinistic theory of the survival of the fittest. Those who are least frail may combine to dominate and subordinate the vulnerable and fragile. The disposition of the strong to support and protect the weak must be based consequently on some collectively shared sympathy or empathy for human beings in their collective frailty and weakness. Following Richard Rorty (1998), one can derive a theory of human rights from certain aspects of feminist theory, from a critical view of the limitations of utilitarian accounts of reason, and from an interest in notions of sympathy, sentiment, and emotionality. Insofar as the strong protect the weak, it is through recognition of likeness, which is itself a product of affective attachment and sentiment. People will want their rights to be recognized because they see in the plight of other human beings their own (potential or actual) unhappiness and misery (Turner 1994, 1998b). Because individual aging is an inevitable biological process, we can all anticipate, in principle, our own vulnerability and frailty. We can anticipate our own impairment. More important, sympathy is crucial in deciding to whom our moral concern might be directed. Sympathy derives from the fundamental experiences of reciprocity in everyday life, particularly from the relationship between mother and child.
However, if this argument is to prevail, we need a more elaborate notion of human frailty. For example, the argument could be made more sophisticated by developing a distinction between pain and suffering. Human beings can suffer without an experience of pain; conversely, they can have an experience of pain without suffering. Suffering is essentially a situation in which the self is threatened or destroyed from outside, for example, through humiliation. We can suffer the loss of a loved one without physical pain, whereas a toothache may give us extreme physical pain without a sense of loss of self or the humiliation of self. While suffering is variable, pain might be regarded as universal. This is closely related to a position adopted by Richard Rorty (1989) in Contingency, Irony and Solidarity, where he argues that
the idea that we have an overriding obligation to diminish cruelty, to make human beings equal in respect of their liability to suffering, seems to take for granted that there is something within human beings which deserves respect and protection quite independently of the language they speak. It suggests that a non-linguistic ability, the ability to feel pain, is what is important, and the differences in the vocabulary are much less important. (P. 88)
There is an additional claim that can be made here, namely that while pleasures are variable, human misery is universal. Although we find it difficult to agree about a common definition of happiness, there is little disagreement as to the nature of human suffering (Moore 1970).
This claim about the unity of suffering can provide a universalistic foundation for human rights: Frailty is a universal condition of the human species because pain is a fundamental experience of all organic life. Such an argument runs counter to the conventional anthropological view of cultural relativism, but the notion that there is an organic foundation to pain and suffering could be compatible with the idea of cultural diversity. Such a position finds strong support in Irving Zola’s (1989) defense of universalism with respect to disability and impairment. Zola was acutely aware of the paradox or “dilemma of difference” (Goffman 1964) that political demands to end various forms of discrimination require a social analyst to identify those who are experiencing discrimination. This identification of a minority requires a special focus on their difference, but to ignore the difference delays the development of positive policies against discrimination. Against a “special needs approach,” Zola argued that, in the long term, we need to support universal policies that recognize that the entire population is in some sense “at risk” in terms of chronic illness and disability. He took this universalistic stance because
only when we acknowledge the near universality of disability and that its dimensions (including the biomedical) are part of the social process by which the meanings of disability are negotiated will it be possible fully to appreciate how general public policy can affect this issue. (P. 406)
The aging of the populations of Western society, the growing prevalence of chronicity, and the globalization of health risks are important demographic and sociological aspects of Zola’s (1989) view of the universality of disability. The basis of his view (the need to universalize policy responses to disability) rested on the claim that only by “bringing bodies back in” could an adequate sociology of disability be finally created. The challenge of Zola’s view of embodiment for the social sciences should remain a permanent feature of both disability studies and policy formation.