Gareth Williams. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
And there stirs in me a little of the same anger as the Negro writer James Baldwin reveals in The Fire Next Time when I remember the countless times I have seen disabled people hurt, treated as less than people, told what to do and how to behave by those whose only claim to do this came from prejudice and their power over them.
The most persuasive sociological writing emerges from a personal feeling. Whether it be of anger or delight, it forms into a conviction about something good or bad in society. It unfolds into a story of loss and change, protest or revolution, and then develops into something more abstract, ecumenical, and systematic but recognizably spoken nonetheless, by a voice still breaking with the emotion that first fired it into the world. Such writing is often driven by a desire to proclaim the truth in situations in which power demands “lies, secrets, and silence” (Rich 1995). The first step is the recognition of something unjust, and while people may not always be in a position to articulate common concerns, let alone develop political strategies, they may nonetheless be profoundly “sensitive to inhibitions, prohibitions, and threats to their freedom” (Kaye 1996:198).
Although the disability movement and studies of disability have traveled a long way since Paul Hunt’s anger stirred in him—and new languages and theories have proliferated in response to economic, social, and cultural change—the ability to think about disability as both a “personal trouble” and a “public issue,” as hurt and prejudice, and to write about it with a vivid sociological imagination marks out the most interesting work in the field, by both medical sociologists and disability theorists. The trick is to see the thing non dualistically, to recognize impairment/disability not as something that is either-or but as simultaneously and ontologically both personal and public—to see it, therefore, as something that requires methodological lenses to help us change focus easily, without feeling that talking about one excludes or even betrays the other. Much of the literature on disability is angry literature, and it is also replete with guilt, shame, betrayal, and a well-intended desire to say the right thing.
“Theorizing disability” is no longer a dry intellectual or technical task. Long gone are the days when an interest in something called “disability” signaled only a concern with the clinical effectiveness of particular prosthetic interventions or drug therapies or a passion for the changing rules for accessing welfare benefits. Although in the view of some scholars working in the burgeoning field of disability studies, “disability has continued to be relegated to hospital hallways, physical therapy tables, and remedial classrooms” (Davis 1997:1), the existence in Britain and the United States, in particular, of 30 years of movement in disability politics has ensured a strong platform from which the academic discipline of disability studies was able to take off in the 1990s (Shakespeare 1998:1). Moreover, if disability studies has opened up a space for reconceptualizing disability in more social terms (Thomas 1999), it is important to recognize that it has done this dialectically with those working within medical sociology and elsewhere. Between medical sociology and disability studies in Britain, years of frosty silence and occasional abuse have evolved into something more like a constructive argument.
The growing field of disability studies has many facets and numerous styles, including Marxist, feminist postmodern, and poststructuralist. Some of these styles emphasize the social oppression of disabled people; others focus on the cultural and ideological construction of impaired bodies (Barton and Oliver 1997; Davis 1997; Shakespeare 1998). However, all this work has as its common root a rejection of the medical model as the foundation for any effective understanding of impairment or disability. As disability has become politicized and the body has become a domain of theorization, the challenge for sociological writing has become one of how to embrace structuralist and poststructuralist work in disability studies while continuing to remain alert to the shape-shifting powers of orthodox biomedicine.
Nearly all work in disability studies explicitly rejects conventional medical, administrative, welfare, or other “property definitions” of disability (definitions in which disability is seen as the property of the person with an impairment) (Thomas 1999). Insofar as epidemiologists and policymakers emphasize social aspects only while continuing to elaborate their positions in language, which makes disability the property of individual people (see, e.g., Chatterji, Üstün, and Bickenbach 1999), they will remain profoundly antagonistic to people working within the field of disability studies. However, it remains the case that developments in rehabilitation medicine, state social security systems, and the entire “disability business” in Western societies can have a profound impact, not only on the lives of disabled people but also on what disability in society is taken to be (Albrecht 1992; Stone 1985).
Insofar as the social reality of disability is in part constructed by the activities and discourses of powerful professional and political interests, without engagement with them (as well as resistance to them), it is not possible to take any effective part in discussions about how many “disabled people” there are, what “problems” they face, or how (as they say in the United Kingdom now a days) “joined up policies for a national disability strategy” might be developed (Howard 1999). While “relational” definitions of disability might be more powerful components of sociological and political theories of disability (Thomas 1999), the property definitions found in both welfare and medical categorizations are part of the “historical materialism” of disability, without which neither personal nor collective experiences of disability can be understood.
Medical sociological writing on both chronic illness/impairment and disability has generally been less antagonistic to the medical model but has emphasized the importance of seeing the experience of impairment and disability from the disabled person’s point of view. The theoretical perspectives used in this work derive from symbolic interactionism and phenomenology (Williams 1996a, 1998). While much of this work developed is in opposition to medical dominance, it has recently found itself in the curious position of being lambasted for covertly supporting the biomedical model (Williams 1996a). What such work often produces are complex lay accounts or narratives of experiences of impairment and disability (Booth 1996; Frank 1995; Williams 1984), not dissimilar from those self-authored autobiographical accounts that are also increasingly visible on the intellectual landscape of disability studies (Couser 1997). These narratives or stories—often personal, sometimes political, occasionally religious or spiritual—offer their own definitions of disability of which professionals in the “disability business” need to take into account. Such narratives of experience are dealt with more fully elsewhere in this volume, but they are touched on here as important contributions to the continuing theoretical exploration of disability.
One consequence of this Babel of discourses is that the study of disability lacks any unifying theory or perspective. However, this absence of theoretical coherence is not necessarily a bad thing. A unifying theory of disability constructed out of the different terms of diverse disciplines would depend on the resolution of enormous problems of translation, and any claim to success would quite rightly give rise to considerable suspicion. Moreover, in the wake of the postmodern turn in sociological theory and social philosophy, not having a unifying theory may, paradoxically, be regarded as evidence of theoretical sophistication. Perhaps this greater pluralism will also make people more relaxed about terminology that has been the focus of intense discussions about words and their meanings (Oliver 1993; Zola 1993a). Although Abberley (1998) is right to suggest that “the most fundamental issue in the sociology of disability is a conceptual one” (p. 79), it is important not to allow the history of words as bearers of ideology to prevent us from thinking creatively about the use of words in the contemporary situation, however limited our control over language may actually be.
This chapter makes the argument that both medical sociology and disability studies have had a critique of the medical model at their core. It looks at the different ways in which something called “disability” has been defined and theorized, and it considers the way in which the medical model of disability has developed from one that looks solely at biological impairment to one that recognizes the multidimensionality of the consequences of disease. Alongside this movement of medical thinking from the body to society—which some see as a welcome sign of medical progress and liberalization, while others see it as imperialistic medicalization—activists and theorists from within the “disability movement” have forged their own definitions that are rooted in their self-defined struggles and conflicts in what is regarded as an able-bodied world. What is called the “social model” in the United Kingdom and the “minority group model” in the United States has been the guiding framework of disability theorists since the 1970s, pushing with increasing strength for disability to be seen as a form of social oppression, and the appropriate response is one of civil rights rather than medical or social care. In recent years, a number of theorists within sociology and disability studies have tried to develop more systematically pluralistic approaches to disability and break away from what I would argue is a theoretically sterile and rather contrived distinction between a social model and a medical model. This chapter concludes with a discussion of some of this work and the possibilities for future development.
The medical model that informs traditional approaches to disability takes the presumed biological reality of impairment as its fundamental starting point. This biological reality is taken to be the foundation of all forms of illness and impairment, whether “mental” or “physical.” Although ill health may arise from sources in the environment surrounding the individual person, it is the individual body within which illness is situated. In relation to the rehabilitation of disabled people, the focus of the analysis and the intervention is on the functional limitations that an individual has, the effect of these on activities of daily living, and attempts “to find ways of preventing, curing, or (failing these) caring for disabled people” (Marks 1997:86). This property definition of disability has been the foundation of all developments in rehabilitation, the epidemiology of disability, and much of the social science-orientated work on the consequences of chronic disease and the quality of life of disabled people. Examples of such work can be found in the medically defined fields of rheumatology, neurology, and elsewhere where a number of medically orientated social scientists have found a comfortable home developing various kinds of measures of outcome and health status (Yelin 1992).
In the period immediately following World War II, health and social welfare for disabled people were characterized by a mixture of formal, institutional neglect and charitable, humanitarian concern, related to national attitudes to those who had been maimed in war (Bury 1996). In this context, assessments of function were oriented toward simple arithmetic calculations regarding the effect of damage and deficit in particular limbs. In this work, the assumption was that measuring the impairment was a sufficient basis to assess the needs of a disabled person. However, as chronic disease emerged as a major public health problem, a variety of different medical specialties emerged to deal with impairments, and assessments of medical and social need became more complex. Much of the initial sociological interest in disability emerged from this context and involved social scientists working alongside rehabilitation specialists and public health physicians.
In response to the changing nature of disability in individuals, rehabilitation models and assessment techniques became more complex, with an emphasis on the multidimensionality of the whole person and the person in his or her “environment” (Gritzer and Arluke 1985). Since the early 1970s, those who were professionally engaged in rehabilitation recognized the need to move away from the highly reductive conceptions of functional limitations focusing on deficits in limbs and organs, which had traditionally characterized physical medicine and physical therapy. This holism was enshrined in official reports, with the promulgation of broader definitions of rehabilitation as the restoration of patients to their fullest physical, mental, and social capability (Tunbridge 1972).
Increasingly, broader definitions of health status in patients with chronic illness and disability were used for two main reasons (G. H. Williams 1987): first, to assess needs for treatment, therapy, services, or benefits and, second, to provide a baseline from which to perform more realistic evaluations of change in the health and functional status of patients, both informally and as part of research and evaluation. The focus of these evaluations was still very much on the individual but with a recognition that it was the person who could or could not perform certain kinds of activities rather than the organ, the limb, or the body conceived abstractly as a bundle of capacities and incapacities. The idea of individual deficit continued to have a profound influence on policies, notwithstanding the influence of some other models of disability and associated reforms.
New types of descriptor (developed by sociologists, among others) consisted of assessments of performances in daily living stressing those activities that are purportedly carried out habitually and universally (G. H. Williams 1987); thus, their measuring of a range of daily activities does extend the conventional clinical measures of “functional capacity.” However, the fact that they are deemed to be universal rather than context bound implies that they can be used across multiple settings without any substantial reconsideration of their validity and without consideration being given to the meaning of the items for the person with the impairment. The Barthel Index, for example, asks only whether a person can walk 50 yards on level ground regardless of whether he or she wants to, needs to, or has any where to walk to (Granger, Albrecht, and Hamilton 1979). Although rehabilitation practitioners have increasingly made reference to the way in which disability affects the “whole person” or “all aspects of an individual’s life,” the nature of this wider context is rarely built systematically into analysis or recommendations for intervention (College Committee on Disability 1986; Gloag 1985).
More recently, disability policy has changed, and definitions have had to alter too. To some extent, these policy changes have incorporated new definitions, but they are also a response to wider changes in economy and society, and they in turn inform conceptual thinking about the nature of disability. However, whether in medicine or social security, there is a continuing emphasis on defining “the problem” as within the individual, albeit as something amenable to change by interventions outside the individual in the wider environment. As far as some disabled commentators are concerned, therefore, fundamental premises have remained unaltered (Dalley 1991), and changes in social and economic policy as they affect disabled people are still imprisoned by their exclusive emphasison some form of “property definition” (Thomas 1999). In the words of one critic, head counts of numbers of disabled people as the basis for policy have failed because “they have focused on the wrong thing; that is they have tried to measure the numbers of disabled people rather than the effects of disabling environments” (Oliver 1998:13).
In line with the positivistic underpinnings of medical science, the emphasis of traditional assessments is on some universal definition and measure that can be applied by appropriately qualified people without reference to disabled people’s own perspectives, the roles they occupy, the relationships in which they are embedded, the circumstances of their milieux, or the wider political context of barriers, attitudes, and power. However broad their frames of reference, measures of health, disability, well-being, and quality of life continue to be driven by classical positivist concerns with universality and generaliz ability. In other words, such assessments provide a picture of “activities of daily living” devoid of any phenomenological grasp of the individual’s own experience or any political analysis of the structures and contexts within which the activity takes place.
As Michael Bury (1996), one of the leading medical sociologists in the United Kingdom, has argued, the field of disability research and policy in the immediate postwar period was conspicuous largely by its absence. Social scientists working within the growing fields of social medicine, social policy, and rehabilitation in this period began to make a contribution to researching the social aspects of chronic illness and disability relating to injury. Most of this work was concerned with the prevalence of disability, but it was hampered by a lack of any clearly agreed definition or approach to measurement. Since the mid-1970s, there have been a number of attempts to clarify the meaning of disability and associated concepts. The pressure to clarify comes from a number of different sources representing very different interests. In Britain, following the government reports of Amelia Harris (Harris, Cox, and Smith 1971), which documented for the first time the numbers of people with impairments, it was recognized that the use of terms such as impairment, disability, and handicap was very confused. On behalf of the World Health Organization (WHO), Philip Wood and his colleagues attempted to develop a set of definitions that was clear and acceptable to different groups (WHO 1980). In the United States, the work of Saad Nagi was driven by the system imperative of reconciling contradictions between definitions of medical impairment and ability to work as a way of rationalizing the allocation of Social Security benefits. He came up with definitions that were similar but not identical to those produced by Wood (Nagi 1979).
Over the same period, various movements of disabled people in Britain and the United States had been adding their own voices to arguments that had previously been conducted in the studious calm of seminars and rehabilitation clinics. In the United States, as early as 1973, the independent living and disability rights movements have made an important contribution to the framing of the Rehabilitation Act, but the problem of definition was circumvented, if not wholly resolved, by an emphasis on people with disabilities. It was in Britain that the Union of the Physically Impaired against Segregation published its own definitions of disability (UPIAS 1976). At the same time, Wood produced the first version of his definitions (Wood 1975), which were picked up and used by others who were concerned with the wider economic and social costs of disability (Taylor 1976).
It is not my intention to recapitulate the history of these different definitions and their conceptual characteristics. The point is that disability can be placed within a number of different frames. These frames can be seen as methodological: tools for helping us to understand what is there in the world. They can also be seen as ontological: mechanisms or practices whereby things that we cannot see because they are taken for granted, or things that are too blurred to see are brought into being, created, or constructed. This ontogenetic capacity of the frames we employ also makes those frames political because they have the power to make us see disability in one way rather than another. Disability is something—if it actually is anything at all—that is framed in a number of different ways with very different implications for our knowledge, policies, and practices. For most of the twentieth century, disability has been understood to be the property of individuals who are “different from normal,” whether cultural “anomalies” or institutionalized “chronic patients” (Arney and Bergen 1983). Biomedicine has been at the heart of defining and managing the meaning and implications of this on behalf of governments and societies.
Definitions and Classifications
At the time that the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) was published, many sociologists worked happily alongside medical and other scientists working within this scientific orthodoxy. It was this Enlightenment-style concern with clearer, sharper definitions that drove the work that culminated in the development of the ICIDH published by the World Health Organization in 1980. A number of features of this model have made it attractive to some clinicians and repellant to many within the disability movement: its continuing use of bodily impairment as the apparent “first cause” in a causal chain, its emphasis on things lacking or restricted in an individual’s abilities, and its dependence, for all the sociological relativism of the concept of handicap, on assumptions about the normal human being. Nonetheless, it is certainly the case that in relation to the history of rehabilitation and epidemiological surveys of disability, the ICIDH, particularly the concept of handicap, was an attempt to break away from an obsessive focus on impaired bodies and limited human beings to a perspective that emphasized the emergence of disadvantage from the individuals’ interaction with the social world. In the context of independently developing sociological work on the experience of chronic illness and disability, this kind of definition made a lot of sense.
Arcane as some of the discussions about definition may seem, they provided the basis for a much more realistic assessment of the prevalence of disability and an argument for increases and shifts in forms of provision. Until 1979, disability was part of the wider discussions about the strengths and weaknesses of the welfare state. This was very much a reformist program, informed by some input from disabled people themselves, situated within either a medical or welfarist framework. While beginning to develop a larger picture of the social ontology and consequences of disability, disability itself was ultimately situated within individual lives and experiences.
For a whole range of epidemiological, economic, and policy reasons, the attempt to find a satisfactory “socio-medical model of disabling illness” (Bury 1997:138) underpinned this enterprise. Against the dominant biomedical model, it was argued that the differences between the impairments arising out of clinically different diseases or accidents were less important than what they shared in terms of their psychological, social, and economic consequences. In part, this was a recognition of the limited impact that much disease-based rehabilitation had on the lives of those people going through long periods of treatment. What was important for someone with multiple sclerosis, it was argued, was not so much the nuanced variation of the unfolding of disease in different cases but the broad impact of living with such symptoms on global areas of social life: work, education, family, sex, identity, self-esteem, and so on.
The growing involvement of social scientists in this area also began to open up different ways of looking at disability. Although many of the social scientists working in the area shared the dominant interests and assumptions of the experts in rehabilitation and public health with whom they worked, they also brought with them a set of theoretical and empirical approaches to thinking about social phenomena that were radically different. The work of Goffman (1968) on stigma, in particular, had a significant impact not just on what social scientists thought mental and physical illness were but also on the legitimacy of different ways of researching and writing about them. The “symbolic interactionist” approach in which Goffman can be located included a notion of individual roles and identities that was seen to be highly relevant to the way in which sociological research on disability might be conducted (S. J. Williams 1987).
These debates between various lay and professional experts all take place in the context of global economic and social change. While theorizing disability develops its own logic, it is necessary for those who engageinit to move back and forth between their experience and concepts to the realities of power and interest in the modern world (Stone 1985; Williams 1991). In most Western societies, politicians are increasingly scrutinizing the claims made on their welfare states and moving away from notions of universal entitlement toward various forms of targeted help underpinned by an emphasis on individual self-reliance. In view of these developments inside and outside disability studies, this debate is not one that can be finally resolved at the conceptual level because the intellectual terrain in which the debate takes place is contested by an increasingly wide range of intellectual and political stakeholders. The terrain is multiparadigmatic, and the development of and relationships between different paradigms need to be seen in a historical context (Oliver 1996) if the analysis is to avoid the kind of standoff across a divide that badly needs bridging (Barnes and Mercer 1996).
In this fecund theoretical environment, Marx, Foucault, and Goffman, at the very least, are required to explain why disabled people “have been isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to adegree probably unequal to that experienced by any other minority group” (Davis 1997:1). Disabled people and their bodies have been framed, intellectually and politically, in a wide variety of ways. Indeed, one important component of our understanding of the way in which disability is to be understood is through an appreciation of the history of disabled people themselves, a complex subject that is covered elsewhere in this volume. These histories themselves are, of course, written within particular theoretical frameworks, but they also help to reveal to us the way in which the categories we use for making sense of human differences have changed over time.
Theorizing disability, therefore, involves the analysis of a number of dimensions of experience and the relationships between them. These dimensions include theorizing the bodily or mental processes that someone experiences; theorizing the relationship and context in which they are placed; theorizing the meanings that emerge, for the person, from the relationship between the two; and theorizing the oppression or disadvantage that arises out of this, particularly social and historical circumstances. In other words, there are multiple on to logies of disability. These on tologies exist in the biomedically constructed body, in the person’s relationship to the “lived body,” between the person and the people with whom he or she comes into contact, and between the historically formed society (encompassing political economy, social welfare, culture, and ideology) and the person as a member of that society.
Meaning and Interaction
As the pseudonymous W. N. P. Barbellion illustrates in an entry in his journal of a disappointed man, the experience of symptoms, or what Thomas (1999) suggests we refer to as “impairment effects,” is de facto a social experience:
The numbness in my hand is getting very trying…. The Baby puts the lid on it all. Can’t you see the sordid picture? I can and it haunts me. To be paralysed with a wife and child and no money—ugh! (Barbellion 1984:253)
The development of sociological research on chronic illness, impairment, and disability since the mid-1970s has been characterized by an attempt to understand the relationship between experiences of symptoms or impairment, the social situations in which people live, and the combined effect of these on the kind of life someone has. Concepts such as representation, trajectory, and career have been developed to make sense of the experience of illness and impairments and the way in which they are shaped (or even “constructed”) by social interaction and organization. It is this quality of human experiences of symptoms, illness, impairments, suffering, and how they are formed by things outside personal experience that characterizes the main thrust of sociological theorizing about disability.
This work focuses on meaning in one or other of two senses of meaning identified by Bury (1991). Bury argues that the meaning of an illness can be defined in terms of its “consequences,” which refers to the impact it has on practical aspects of the person’s roles and relationships in everyday life or in terms of its “significance,” which relates to the cultural connotations, symbols, and significations surrounding different sorts of illness and disability. Both these forms of analysis of the meaning of chronic illness and disability have the notion of embodied experience at their center, but rather than attempting to define functional incapacity or activity restriction in biomedical terms, they explore the ramifications of the experience from the point of view of the person affected. In other words, while the biomedical model has disease or dysfunction at the center of its picture, sociological approaches focus on illness as something whose meaning and reality vary depending on the biography of particular individuals and the circumstances in which they find themselves. Stigma and deviance are the processes of societal definition and framing in social interaction.
The quote from Barbellion’s (1984) journal illustrates very well how important both senses of meaning are in theorizing chronic illness and impairment and how the two kinds of meaning merge within an individual’s experience. The numbness in his hand is upsetting for him because of what it might signify about him, and what it might signify about him is dependent on his circumstances—a new father with financial responsibilities in the context of British society prior to the development of a health service and a welfare state. Taken together, these represent a “sordid picture” in his mind. Regardless of the fact that his symptoms at the time he was writing were limited in the sense that he was not restricted in most activities of daily living, from his point of view and situation, the symptoms were highly significant and consequential.
The attempt to understand the meaning of experience by looking at it in its context lies at the heart of the medical sociological project. The focus on chronic illness and the experience of disability associated with it can be seen as an attempt to move away from the rehabilitation models that were rather static, reductive, and focused on the mechanics of functional limitations and activity restriction. While the experience of “adaptation” to a limb amputation or some other trauma-induced impairment clearly has its own dynamics, influenced by personal, situational, and treatment factors, chronic illness introduces new problems of enormous variability and unpredictability (Bury 1982; Strauss and Glaser 1975). While disability might have certain unifying features, sociologists have been interested in both subjective variation in response to the “same” illness and impairment and variation in the meaning (in the second of Bury’s senses) of different kinds of symptoms in society. Explorations of breathlessness, itching and weeping skin, painful joints, heart problems, end-stage renal failure, and many others have allowed sociologists and anthropologists to explore the seemingly infinite permutations of the experience of being physically different in a highly normalizing society (Anderson and Bury 1988; Strauss and Glaser 1975).
Some of these sociological analyses are phenomenologically “deep” or “thick”; others are more inclined to skate over the surfaces of meaning but nevertheless deal with the interaction between symptoms and situations. The hallmarks of this kind of work are, therefore, its focus on the symbolic and material interaction between the individual and society and the interpretive processes whereby individuals construct meaning from their experiences. The environment focused on is that which emerges in the meaning-giving processes of interaction between the individual, the individual’s milieux, and the wider society. It therefore follows from this that disability (or “handicap”), in the World Health Organization’s (1980) definition, is the product of complex processes of interaction between an individual with an impairment and the discriminating, disadvantaging, stigmatizing, and prejudiced wider society. It is neither in the individual nor outside the individual in society:
The extent to which functional limitations and activity restrictions constitute a problem, or are otherwise handicapping, is not only variable historically and culturally but is also somewhat dependent upon more immediate contexts; their meaning is not the same across different social and environmental settings. (Locker 1983:5)
The point for Locker (1983), therefore, is that “disability” or “handicap” (he makes use of the WHO schema) as a social reality of people’s experiences is caused neither by the externalities of the environment nor by any “facts” of biological trauma or deterioration. This kind of analysis is primarily concerned with meaning as consequences rather than meaning as significance, though it may, as Locker does, explore at some level the “significance” of symptoms to individuals in terms of some notion of “felt stigma” (Scambler 1989). The traditions of sociological theorizing about “disability,” therefore, have tended to focus on two of the ontologies to which I referred earlier: the lived body and the everyday relationships between the person with impairment and family, friends, and professionals.
Theorizing Bodily Experience
Much of the early work theorized the disabling consequences of impairments by way of a very specific empirical focus on the management of symptoms, the organization of medical regimens, and the handling of interactions with people known and unknown. In that sense, it was work that provided a complement to, rather than direct criticism of, the biomedical model. More recently, however, with the growing interest in relationships between the body and identity, analysis of the experience of illness or impairment has turned more and more toward the meaning of embodied experience. These analyses may also concentrate on the interactions within the mundane world, but there is a sense in which the purpose of these interactions can be interpreted as having rather more transmundane qualities. Such a path leads us away from the empirical features of the impaired individual’s interaction with the material world back into the “self” and “body.” The focus of the problem shifts from interactionism to the exploration of the lived body, the body incarnate in which the meaning of illness is revealed.
There are some skilful examples of this mode of analysis, such as the work of Kathy Charmaz, who has written of the process of “immersioninillness,” which “means experiencing the vulnerability of one’s body” (Charmaz 1991:80). It is possible to see how this kind of work is attempting to do more than descriptively report on the empirical dimensions of the consequences of illness and impairment. It is somehow trying to touch that place in which loss, suffering, pain, degradation, and humiliation are actually felt and offer witness to the truth of the human condition. It is at this point that the dividing lines between sociology, phenomenology, and a kind of nonspecific religiosity become very difficult to find. The “existential-ontological language” of theology and the more theological forms of philosophy and literature (Macquarrie 1967) are powerful resources for meaning, and some sociologists have drawn on these in trying to interpret the experience of illness and impairment.
Some of the more powerful phenomenological analyses come from individuals, usually middle class and often academics or writers themselves, who have tried to explore autobiographically the depths of their own experiences of cancer, neurological disease, heart attack, or whatever else (Couser 1997; Frank 1991; Murphy 1987). The best of this work gives preeminence to the ill person’s perspective, emphasizing the “illness” (the social experience) above the “disease” (the physiological processes). However, the aim within this project “to consider illness stories as embodied also deconstructs the distinction: the illness experience is an experience in and of a diseased body” (Frank 1995:187). In much of this work, the storied or narrative nature of illness and disability is emphasized (Hyden 1997). Although most of the sociological work on this theme would not admit to what is criticized from within the disability movement as a “personal tragedy” view of disability, it does take as axiomatic the importance of bringing the tragic dimensions of human experience to the forefront of discussion and debate. The exploration of the experience of illness becomes a vehicle or location for exploring basic questions about the nature of the self in the world and the fundamental meaning structures in a person’s life. The concept of a narrative is a powerful framework for analyzing “tragic” experiences of illness for a number of reasons. It provides a temporal framework for thinking about illness, it describes a life both as a sequence of events and as unified around some purpose or purposes, and it moves back and forth between the subjective experience and the world in which the experience is lived out.
Theories in Narratives
Narratives are epistemic concentrates of experience in place and time. If impairment and disability can be seen as disrupting “biography,” making problematic the relationship between the individual and the environment, it makes sense to regard the experience of having a chronic illness or disability as part of a process of “narrative reconstruction” (Bury 1982; Williams 1984). Some of this work is explored in other chapters. The point for our purposes is to recognize that theorizing disability is not merely about abstractly conceptualizing the relationships between impairment and situations—it is about how those relationships work for people in dynamic and complex personal and social processes. It is a body of work that has many origins. It partly originates in a growing interest in narratives or other first-person accounts, across a range of disciplines and beyond the specific issues of illness and disability (see Hinchman and Hinchman 1997 for examples). It is also a form of discourse about illness that has been given a high public profile by the history of HIV/AIDS, in which the intersections of personal identity and the history of a societal response to disease, disability, and death have, of course, been particularly sharply defined (Couser 1997). While some of this work emphasizes the materiality and the historicity of such narratives—the political economy of illness (Radley 1993)—other research engages more and more deeply with the subjectivity of the experience—the negotiation and renegotiation of identity through talk, the rediscovery of self in the chaos of illness, and so on (Sacks 1985). Some have explored with great skill and empathy the different kinds of narratives that can be constructed about the experience of chronic—often terminal—illnesses (Frank 1995; Mathieson and Stam 1995).
In much of this narrative-based work, what started as a sociological analysis becomes part of a quasi-religious or spiritual quest for the truth, which illness is supposed to reveal. So profound is the truth of illness that even the person experiencing the illness is merely a vehicle for allowing the body to speak of its suffering. This is truly the body incarnate:
The body is not mute, but it is inarticulate; it does not use speech yet begets it. The speech that the body begets includes illness stories; the problem of hearing these stories is to hear the body speaking in them. (Frank 1995:27)
Some (but by no means all) of this work can shed a bright light on “human” conditions. However, there is a danger that the process of living with chronic illness becomes represented as so idiosyncratically idiographic that it leads us further and further away from any sense of the society in which the anguish of experience is embedded and, indeed, shaped. As a consequence, the processes through which the response to chronic illness and disability emerges become less and less social and collective and more and more rooted in the psychological, cognitive, and existential world of the individual. There is less exploration of the interaction between the person and the “environment” in the presence of the disruptive effects of chronic illness and more searching the constitution of the self in the presence of a disordered body.
While Christian theology and the learning of other world religions certainly provide rich languages for exploring questions of ultimate concern (life and death, suffering, guilt, and redemption), they can also—if we are not very careful—reduce the individual to a body and limit the experience of illness and disability to a personal quest for meaning and truth. The politics and history of illness and disability become marginalized, and medical sociologists begin to “reproduce the disablism that sociology exhibits everywhere else” (Barnes 1996:19), and the realities of health and social care become forgotten. All that is left is the individual engaged in some abstract process of overcoming bodily “failure” and “coming back” to normality. Even when there is no specific reference to a religious or spiritual interpretation, the language suggests suffering, redemption, and resurrection.
Coming back is the process of returning to a satisfactory way of life, within the physical/mental limitations imposed by a disabling condition…. To come back is a very personal experience. Although others can provide assistance, only the individual can come back. (Corbin and Strauss 1991:138–39)
I have tried to show in this section how sociologists have responded to the limitations of traditional rehabilitation perspectives and theorize disability in a more holistic way. They have done this by emphasizing the need to move away from professional definitions of impairment and disability to explore the ways in which people with chronic illness and disability defined the relationship between their symptoms and situations. Using various forms of qualitative methods, they have attempted to reconstruct from people’s own accounts of their experiences the reality of chronic illness and disability as something that emerges out of the relationship between the person and the environment. The World Health Organization’s (1980) classification illustrates at a conceptual level what most of these studies attempt to accomplish at an empirical level.
However, I have also indicated how the relational can at times slip into a phenomenological analysis in which the individual or even the body returns to the center of attention, albeit constructed in a discourse somewhat different from that employed within rehabilitation medicine. While explorations of the lived body can illuminate experiences of extreme situations, once detached from the political economy and history of disability and its relationship to state and society, they can become an unhelpful form of self-analysis. The coming back or overcoming is not seen in relation to a collective response to societal barriers but rather in terms of some kind of individual self-transformation.
In the end, so seduced is such theorizing by the voyeuristic delight and horror of looking in on the dark secrets of the self that it loses sight altogether of the structures—of society, policy, and organization—that provide the inescapable framework of experience. History and even biography are dissolved in ever-deeper phenomenological penetration into the interstices of self and world. The politics of the life writing Couser (1997) describes are cultural: a politics of representation and discourse rather than a politics of resources and structures. An AIDS narrative is interpreted as counter hegemonic in that the “sickroom” becomes “a battlefield, a scene of struggle, rather than a site of isolation and invalidity, passivity and despair” (Couser 1997:166). And although Couser (1997) acknowledges the increasing politicization of disabled people and the existence of the “social model,” his definition of disability seems caught between seeing it as “a physical and existential condition” and as something created by the “cultural site” in which it is located.
It is certainly not the intention of this sociological analysis to produce a prescription for what is to be done that denudes the situation of its politics and material basis. Indeed, the point of taking a “sociological perspective” for most practicing sociologists is precisely that “it provides an alternative perspective in which individualized, homogenized, and disablist conceptions of policy and practice are subject to critical analysis” (Barton 1998:54). Nonetheless, the consequence of this has been that what began as an attempt to see chronic illness and disability as the product of the complex relationships between individuals, milieux, and social structures becomes a picture in which the illness is portrayed as something that causes certain social consequences.
The central criticism from within disability studies of sociological approaches is that they fail to retain a sharp enough understanding of the politics of both the experience of disability and the construction of the categories we use to speak about it. In short, the sociological imagination has not been exercised sufficiently robustly by sociologists, and it is argued that it is more evident in those engaged in praxis at the heart of the disability movement (Oliver 1996). In addition, what passes for the “sociology of disability” is unreservedly condemned for being “both theoretically backward and a hindrance rather than a help for disabled people” (Abberley 1987:5).
In these terms, it is not surprising that those working from within the disability movement should want to distance themselves from sociological contributions to the study of chronic illness and impairment. Insofar as medical sociological work retained a key interest in clinical conditions, even if seen from the point of view of the person with the condition rather than the doctor, it is “destined to lead to a partial and inhibiting view of the disabled individual” (Brisenden 1998:20). In contrast, within much work in disability studies, the prime mover, in causal terms, is most certainly not the “clinical condition” or the individual in a state of tragic adaptive “failure” but the oppressive society in which disabled people live. If disability is seen as a personal tragedy, disabled people are treated as the victims of circumstance. If disability is defined as social oppression, disabled people can be seen as the collective victims of an uncaring, discriminatory society (Oliver 1990).
The object on which many of the conceptual knives of the disability movement have been sharpened is the WHO’s ICIDH, partly because this classification was developed outside the disability movement (albeit, pace Barnes 1995 in consultation with disabled people), but mostly because it is seen to place impairment at the center of its taxonomic efforts. It has been rejected by people involved in the disability movement in Britain and the United States. It has continued to be less objectionable in Europe, perhaps because non-English-speaking people recognize the enormous philosophical and linguistic difficulties that the authors of the ICIDH grappled with in coming to a settled view on the definitions of impairment, disability, and handicap that also made sense in other languages. It is unfortunate that the debate over terms got rather mired in etymological issues. For example, much has been made of the origin of handicap in the nineteenth-century Poor Laws in England, even though the historical evidence for such a claim is not clear (Devlieger 1999).
However, the rejection of the ICIDH is an important historical moment, marking the divide between those who see disability as an emergent property of the interaction between person and society and those who see it as an expression of social oppression. For these latter, medicine, social security, charity, social work, occupational therapy, and so on are all engaged in an ideological practice that defines disability in ways in which it becomes—in the final analysis—a property of the individual rather than a feature of the society. So profound is the assumption of individual property and properties within the Western ideology of “possessive individualism” (Macpherson 1962) that it is difficult to hold conceptually to this, even when it is supported politically. Individualism, as Steven Lukes (1973) argued, has political, economic, religious, ethical, epistemological, and methodological manifestations.
There are different versions of the social model of disability. In the United States, it is more commonly referred to as the “minority group” model of disability, the basic thrust of which is that
disabled men and women have been subjected to the same forms of prejudice, discrimination and segregation imposed upon other oppressed groups which are differentiated from the remainder of the population on the basis of characteristics such as race or ethnicity, gender and aging. (Hahn 1997:174)
This fundamental position is that which underpins most of the writing by disability theorists in Britain too. However, while in Britain the theoretical driver of the early statements of principle (UPIAS 1976) was a neo-Marxism that defined itself in opposition to welfare-Fabianism and well-meaning liberal-functionalist sociology, in the United States, much of the work has combined a subtle Marxist analysis with a political perspective derived from concepts of civil and constitutional rights. In the United States and in the United Kingdom, however, the arguments developed by people who saw themselves as activist-academics sought to “turn the world upside down” in a tradition of popular revolt that would upset structures of both power and knowledge. It is a position that leads to a very different picture of, for example, the nature of dependency when compared with sociological perspectives. Let me contrast two quotations to highlight this difference between medical sociology (or one example of it) and the work of one very influential disability theorist:
Certainly physical dependency, if not also social and economic dependency, can result from illness. (Charmaz 1991:80)
Dependency is created amongst disabled people, not because of the effects of functional limitations on their capacities for self-care, but because their lives are shaped by a variety of economic, political and social forces which produce it. (Oliver 1990:94)
The problem to be overcome is not anything within the individual’s body, mind, or soul. There is no personal road to redemption and salvation. It is, as some of the sociological work indicates (Locker 1983), to do with resources in society. However, in this case, the relationship between the individual and society is much more clearly stated. Disability and dependency are caused by society. On this analysis, “hostile environments and disabling barriers—institutional discrimination” are seen as the “primary cause of the problem” (Barnes 1992:20). Proponents of this “social model” turn the conventional models of those working in rehabilitation on their heads, arguing that if you change society, disability will disappear.
The causal relation is reversed, and, as a consequence, the traditional theories and practices of those engaged in rehabilitation come to be seen as part of the problem. If the dominant ideology of the medical model informing rehabilitation defines the focus as what has happened to an individual and what can be done “for the patient,” attention is distracted from the primary structural causes, and the medical profession and those working next to them become key figures in the perpetuation of oppression. In view of the overwhelmingly political impulse in much of this work, sociologists who concede any primary role to the bodily disorder or impairment can be criticized for participating in an oppressive ideological practice, and the WHO classification that, in my judgment, was put forward to socialize and collectivize our understanding of “disablement” becomes transformed into an extension of the medical model. Sociological analysis of what disability is like, from the point of view of someone with an impairment or disability the phenomenological or interactionist exploration of the construction of reality—becomes another ideological justification for the oppression of disabled people.
I have developed my arguments against this position in a number of publications (Williams 1983, 1988, 1991, 1996a). It seems to me that the oppressive quality of everyday life for many disabled people is indubitable, and the origins of much of this oppression lie in the hostile environments and disabling barriers that society (politicians, architects, social workers, doctors, and others) erects. However, to theorize disability wholly in terms of “social oppression” seems to me to be profoundly limited for three reasons. First, most disability in modern societies emerges from chronic illness, and illness, unlike ethnicity or gender, emerges slowly over time. Second, someone who is able-bodied is only temporarily so. Disability is therefore a category theoretically open to everyone and, as populations age, one that becomes a more likely end point for any given individual. Third, notwithstanding the socially constructed nature of embodied experiences, phenomenologically, disability has, at some level undeniably to do with the pain or discomfort of bodies, and this is a dimension of the oppressive quality of chronic illness and disability for large numbers of people. To say that disability is social oppression and that the body has nothing to do with it is curiously solipsistic and clearly not the whole story, and among those who otherwise support the broad viewpoint, there has been an attempt to bring impairment back into the picture (Crow 1996; Thomas 1999).
Nonetheless, the social model or the minority group perspective is a powerful story, supporting a theoretical perspective that needs to be argued and justified because on a number of grounds—empirical, political, cultural, epistemological—the dominance of medical knowledge in this area has to be challenged and turned upside down. But having turned the world upside down, it is then necessary to rearrange the pieces. It can be seen, therefore, that while both medical sociology and disability studies stand in contrast to the biomedical model of disability, the interest of medical sociologists in subjective experiences of symptoms and impairments places them in a complementary position in relation to the medical model. Disability studies, on the other hand, rejects the medical model on the grounds that it defines disability primarily in terms of things that have gone wrong with an individual’s body. As Davis (1997) points out, “We live in a world of norms,” and both medical and welfare definitions of disability define people in their relation to “the norm.” Yet, as he goes on to point out, “the idea of a norm is less a condition of human nature than it is a feature of a certain kind of society” (p. 9).
Moreover, the perpetuation of the norm, as well as the cultural dichotomization of normal and abnormal, is inscribed in photographic and cinematic representations of disability (Darke 1998; Hevey 1997) and in architectural assumptions about the normal human body (Imrie 1998). If norms are a product of society, and disability is defined as a departure from the norm, then disability is a social construct. If disability is a social construct, changing the dominant construct, biomedicine, and the practices undertaken in its name will transform or eliminate disability. While many sociologists writing about disability would agree with this, they stop short of a full revolution of the epistemological sphere. The conflict that emerged between the “medical model” and the “social model” during the 1970s and 1980s has become, to this author at least, less clear-cut in recent times. While the medical model has become more social in response to sociological criticism, political protest, and the limits of medical interventions, the social model has become less unitary as it has been exposed to debate inside and outside disability studies. The politics of the social model are as fragmentary as the cultural politics in which they are embedded. Inrecent times, the post-Foucauldian focus on the nature of the body has made a number of adherents of the social model search for new ways of theorizing impaired bodies without losing the political edge of the social model. Most people writing within the tradition of the disability movement have treated disability as if it had nothing to do with illness.
More recently, however, disabled writers and others have written of impairment as an inescapable part of the politics of disability, and this provides a place of common ground with much of the sociological writing on chronic illness and disability. There are now signs of hope that the rather sterile divide between disability studies and medical sociology can be bridged or at least acknowledged with greater openness than has been the case in the past (Barnes and Mercer 1996). The sources of this new enthusiasm for collaboration and partnership have many sources. Some of these sources include the following:
the increasing diversity and differentiation within the disability movement itself and the need to bring impairment and the body back in (Crow 1996; Williams 1996b);
the recognition of the similarities and differences of experience among those with physical impairments, learning difficulties, and mental health problems (Barton and Oliver 1997);
the continuing need in government for some kind of “individual” head count of people eligible for benefit, whatever the social definitions of disability may be;
within sociology and cultural studies, the growing interest in the body and new forms of political resistance that lie outside or across the conventional dividers of gender, race, and class.
In the next section, I will examine the implications of this new pluralism for theorizing disability.
Polyphony or Cacophony?
To recapitulate, sociological perspectives on disability have been criticized by disability theorists on a number of different (and sometimes seemingly contradictory) grounds: for not paying attention to disability, for enhancing rather than rejecting the medical model, and for becoming obsessed with the details of illnesses and impairments. All these concerns contain some truth: Disability has not excited the same interest in mainstream sociology as class, gender, or race. Early work on disability by social scientists was undertaken in collaboration with rehabilitation specialists and epidemiologists who took the reality of individual impairments as a starting point (Bury 1996). Some of the more phenomenologically orientated work on chronic illness has attempted to reach the deepest interiors of people’s subjective experiences to a point where the connection between those experiences and the outside world is not easy to see.
However, these criticisms contain a truth that depends to a large extent on the setting up and knocking down of straw men and women and on a tendency to theorize anachronistically. Mainstream sociology may have neglected disability, as Barton (1996) and others have argued, but the sociology of health and illness—a large and growing constituency—has not, even if the conceptualization of its interest has not been to everyone’s taste. Social scientists’ work on the conceptualization and measurement of need among disabled people was, to some extent, individualistic, medically orientated, and “paternalistic.” Yet much of this work was important politically in drawing attention to large numbers of people whose needs were not being met by the health service or the welfare state more generally.
Moreover, the work of sociologists such as Blaxter (1976) in the United Kingdom and Strauss and Glaser (1975) in the United States did start an important process of using laypeople’s own accounts of life with symptoms and the difficulties they experienced with professionals as the basis for developing an understanding of chronic illness and disability and making recommendations for how doctors, health services, and society should be educated, organized, or constituted. While such studies may be criticized from the viewpoint of the social or minority group model for having looked at social aspects of chronic illness and disability with the individual, who uses illness or disability as his or her starting point (Oliver 1996), when individuals with chronic illness or disability are allowed to speak, they will start with themselves, autobiographically, and the virtue of this kind of work is that it allows that to be possible.
Increasingly, knowledge and frameworks developed by sociologists are interrogated, interpreted, and made use of by groups who were formerly its objects. More recent critiques of sociology by disability theorists point to the assumptions that have framed much of the research agenda, with the methods that are used producing answers that reinforce predominant models of disability (Barnes and Mercer 1997). Taking as his example some of the questions used in the U.K.’s Office for Population Censuses and Surveys (OPCS) to ascertain “levels” of disability, Oliver (1990) suggests how questions that ask about an individual’s “difficulty in holding, gripping, or turning things” could be reframed as a question about defects in the design of everyday equipment that limit a person’s activities, or how a question about an individual’s “scar or blemish” could be reframed to ask about difficulties caused by other people’s reactions to any such blemish.
While the extent to which these questions offer any practical alternative to current survey items is debatable (Bury 1996) and is being exposed to some empirical examination (Zarb 1997), they do turn the world upside downinamanner that requiresus to question our framing of the relationship between individual experiences and social circumstances. Oliver’s (1990) satire also raises questions about the relationship between lay and professional expertise within the processes whereby knowledge about “disability” is produced. However, we need to be sensitive to the way in which methods and research questions are embedded in the political economy and culture of a certain time and place—be it postwar collectivism, the individualism and consumerism of the 1960s, 1970s corporatism, or That cherite and Reaganite monetarism and are the outcome of particular decisions by politicians, civil servants, and, to some extent, researchers to ask questions in one way rather than another (Abberley 1996a).
The critique of the dominant methods used in the social sciences for understanding disability goes beyond a replacement of one set of survey questions by another. It seeks to contextualize the concept of disability within “knowledge which arises from the position of the oppressed and seeks to understand that oppression. Such sociology requires an intimate involvement with the real historical movement of disabled people if it is to be of use” (Abberley 1996b:77; see also Barnes and Mercer 1997). However, to imply that the position of disabled people is uniquely oppressive replaces one kind of exclusivity with another. It defines disabled people as an undifferentiated class in itself without the differences of body and identity, which clearly have cultural significance for disabled and able-bodied people (Hughes and Paterson 1997). This strategy leaves disabled women, for example, “perennial outsiders” in both disability studies and feminism (Begum 1992:73; see also Meekosha 1998; Morris 1996; Thomas 1999).
Recent poststructuralist, neo-Foucauldian analysis attempts to bring the body back in by conceptualizing it as the object of knowledge and the target of power. In Hughes and Paterson’s (1997) terms, “Post-structuralism can be useful in the orising impairment out with a medical frame or reference” (p. 333). In this way, it is argued, the embodied experience of different impairments and their relationship to identity can be part of a more inclusive disability politics. Theorizing disability as fluid and continuous rather than permanent and dichotomous would help to open things up epistemologically and politically (Zola 1993b). If this were to be developed, some of the current difficulties involved in including people with learning disabilities, mental health problems, and other less visible forms of impairment into theoretical frameworks and policy discussions might be reduced, thus allowing an understanding of politics that is as much about aesthetics as economics (Hughes and Paterson 1997). It would also allow for “the near universality of disability” and the diverse “chorus of voices” that disability represents to be part of the movement in the manner advocated by Zola (1989, 1994).
Marginalization of debate about the body has been characteristic of the disability movement, perhaps for good reasons. As Benoist and Cathebras (1993) point out, closure of “the body” is characteristic of most systems of thinking underpinning utopian projects and visions. Pinder’s (1995) work about how fixed definitions of disability may have obscured the experiences of some disabled people at work draws attention to some of the consequences of excluding the dimension of lived experience. Pinder argues that many fall into “no-man’s land” between definitions of able and disabled and that these have done some disservice to the task of promoting the interests of disabled and differently abled people at work. Similarly, Zola has argued that the ex-clusivist leaning of some of the writing about disability has led to the marginalization of the growing numbers of older people whose bodies will slowly, but surely, let them down (Zola 1991).
Increasingly, poststructuralist, postmodernist, and feminist analyses have argued that all encompassing theories of disability and oppression can never encompass the diversity of lived experiences (Crow 1996; Hughes and Paterson 1997). As Radley (1995) argues, being disabled involves distinctive bodily experiences, but such experiences cannot be seen as unique in a smuch as they “symbolize and are symptomatic of social contradictions and struggles sited on the body” (p. 19). Peters (1996) draws on the postmodern perspective for what she calls critical pedagogy—working toward a critical understanding of the world and one’s relation to the world—with disabled people and others. In Peters’s interpretation of postmodernity, one implication is that different insider voices can be articulated and heard and can challenge those of the academy (in this case, professional sociologists). For her, as for other feminists, making private experience speak to public policies is a radical act.
For those who hold firmly to the “social model,” however, it is argued that these revisionists do not seem to realize that experience was what drove the disability movement in the first place, as I indicated by reference to Hunt (1998) at the start of this chapter. Also, much of the apparently new work, which tries to bring impaired bodies back in, is really going over old ground rather than building on what has gone before. The consequence of too much emphasis on diversity and difference in impairment, it is argued, is that the boundaries between impairment and disability as social oppression become blurred. In addition, much of the new wave of work in disability studies stands in danger of replicating the sentimental autobiography or disease-based analyses found in medical sociology (Barnes 1998).
Cutting across sociology and disability studies, the work of Irving Zola, a sociologist and disability activist, represents an important attempt to link the material, social, and cultural dimensions of disability (Thomas 1999; Williams 1996b). During the early 1980s, Zola recognized that while his politics had to be unwavering in the articulation of demands for independence and an end to discrimination, there was more to a sociological analysis of disabled people’s oppression than an empirical identification of environmental barriers conjoined with a conspiracy theory regarding the interests of professionals engaged in rehabilitation. In line with many other activists in both Britain and the United States, Zola recognized the undermining power of the dominant ideology of disability that regarded “it”—that is, the thing from which the individual “suffers”—as a personal tragedy. It is, perhaps, his ability and willingness to combine the personal and the political, subjectivity and materialism, that makes adherents of the orthodoxy of the social model, with their denial of the structured silence of subjective bodily experiences (Meekosha 1998; Zola 1991), uncomfortable with him.
Zola resisted the temptation to allow his sociology to be reduced to political ideology. This allowed him to avoid a rigid “us and them” theorization of disability and helped him recognize, for example, the enormous implications of aging societies peppered with chronic illnesses for the development of the disability movement (Zola 1991). Zola pointed out that the processes of aging linked the interests of “the able-bodied” to those of “the disabled.” However imperative it may be politically to define people with disabilities as a minority group, it is a curious minority that includes us all—if not today, then tomorrow, or the day after—and that
only when we acknowledge the near universality of disability and that all 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. (Zola 1989:420)
In addressing the debate on the words used about disability, Zola preferred to talk about “people with disabilities,” putting people first. He emphasized that in choosing certain terms, he was “not arguing for any politically correct’ usage but rather examining the political advantages and disadvantages of each” (Zola 1993a:171). In Zola’s view, there was no single, unequivocal authentic voice of disabled people (Zola 1988), nor is there any set of definitions of the universe of disability that can or should be adopted as a standard. A similar argument has been developed in Britain by Corker (1998) and Shakespeare (1996), who see in postmodern and poststructuralist analysis a way of remaining critical in relation to biomedicine while also challenging the tendency to essentialism in the “metanarrative” of the social model.
In place of the monochrome languages of the “medical model,” on one hand, and the “social model,” on the other, we find in Zola a willingness to examine disability from many points of view and adesire to underst and the contribution the growing polyphony has to make to our discussions about disability. Zola’s work was a bold attempt to hold firm to the politics of disability while remaining free to explore its darker phenomenological waters. He wanted to place at the forefront of any discussion of disability the bleak realities of economic deprivation, disenfranchisement, and marginalization while insisting on the continuing need to find a place for research in clinical rehabilitation and an interpretive phenomenology of the personal worlds of people with disability and chronic illness. Within this context, the ontological reality of the impaired body was central to the development of any social theory of disability. It could be argued that when some of the more recent writing in disability studies is examined, Zola was an avant-garde poststructuralist. As Corker (1998) argues,
Post-structuralist discourse on disability does not “reject” the social model. Rather it suggests that, since disability is now located in a postmodern world, it is appropriate to begin to look at the relationship between the individual and society rather than to focus on the individual or society. (p. 232)
This brings us back to some of the central problems currently facing social theory and the social sciences as we attempt to develop better ways of understanding the relationships between agency and structure. While much of the attempt to bring the body back into the sociology of disability can overemphasize self-authorship of possibilities, work on the lived body has the potential to respond to some of these challenges. Thinking about the lived body forces recognition of the constraints as well as the possibilities of interpretation. As Nussbaum (1995) argues, “We all live our lives in bodies of a certain sort, whose possibilities and vulnerabilities do not as such belong to one human society rather than another” (p. 76). There are, of course, other ways of situating knowledge and praxis in relation to disability that cut across this poststructuralist conceptualization. For example, it has recently been argued that a more productive way to think of the oppression of disabled people is to see it as part of the history of disabled people across the world, one that is grounded in a materialist analysis of oppression that exists outside disability perse (Charlton 1998). Charlton (1998) argues that we need to see the oppression experienced by disabled people as a global phenomenon—80 percent of the world’s 500 million disabled people live in “developing countries.” This oppression, argues Charlton, results from structures of domination and subordination and ideologies of superiority and inferiority. The oppression—exploitation, marginalization, and powerlessness—of disabled people cannot be understood within a poststructuralist framework. While there are cross-cutting identities and relationships of disability, gender, race, age, and class, these cannot be understood in a nonstructural way. As Charlton puts it, “The oppression of individual disabled bodies is not the basis for the oppression of people with disabilities, it is the oppression of people collectively that is the basis for the oppression of their bodies” (p. 57).
Such an analysis allows impairment and disability to be situated within a framework that encompasses disabled people and others whose relationship to the means of production, distribution, and exchange is disadvantaging. In this context, challenging “disablist oppression is a necessary step in the struggle to eradicate all forms of oppression” (Barton 1996:10). Both Marx and Foucault, at the very least, are required to explain why disabled people “have been isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to a degree probably unequal to that experienced by any other minority group” (Davis 1997:1). Charlton recognizes the importance of acknowledging the oppression of the body within sickrooms dominated by professional experts and developing points of resistance to it, but it is impossible to do this effectively without understanding it in the context of the distribution of power and status in the broader society.
Placing too much emphasis on the politics of exclusion may be regarded as a way of underplaying the real effects of different impairments and the complex, “negotiated” aspects of everyday life, thereby creating a spurious homogeneity. Crow (1996) has written with feeling about the discounting of the experience of impairment resulting from “keeping our experiences of impairment private, and failing to incorporate them into our public analysis” (p. 66). Others have begun to point out the need to explore the nature and status of impairments, without being restricted by seeing them as purely biological or purely social (S. J. Williams 1996). However, as we have indicated, focusing too much on impairment is seen to deflect attention from the systematic way in which the social and material environment excludes people from participation in civil society.
Any theory, whether expounded by sociologists or by disability theorists and activists, that over determines social control risks paralyzing the possibilities for change. The anger that originally fired Hunt and others gets doused with an overdose of theorizing—structuralist or poststructuralist. Within sociology, we see the turn toward “the body” as representing a longing for community, for connection, and for meaningful participation (Kirkmayer 1992)—a turn away from some of the more sterile territories of critical theory. However, if theory is not to in capacitate meaningful politics altogether (Hallsworth 1996), then it must use the insight of lived experience as grist for its development, and closure of the subject of the body is no longer possible. As Smart (1992) reminds us, “Postmodernism signifies incredulity towards meta-narratives in general, and towards the grand narrative of emancipation in particular” (pp. 176–77), with the attendant dangers of slipping into a politics of hopelessness. However, a focus on the politics of identity alongside the politics of structures might provide the basis for the development of the liberative theory of disability called for by Abberley (1998), which would assert “the rights of the human being’ against the universalization of the human doing’” (p. 92). Without a continuing incorporation of subjective experience into structuralist theories, they become impoverished and meaningless for the lives of those who they are supposed to explain (Thompson 1978).
Where next for theorizing disability? This has been a long but necessarily partial tour through what I see as some of the key issues emerging from the fields of disability studies and medical sociology and the effects of the growing willingness to exchange ideas and perspectives between them. My own perspective is one that I would characterize as “materialist phenomenology”: a commitment to understanding other people’s experiences in the context of what used to be called the objective conditions in which they find themselves. It could be argued that considerable political mileage has been clocked up by holding to a fairly tough and uncompromising definition of the “social model” or the “minority group” approach. However, the social reality of disability is one of considerable variation in the experience of impairment by large numbers of people who nonetheless share common conditions of exclusion, marginalization, and disadvantage.
Like Zola, we need to resist the temptation to allow our sociology to be reduced to political ideology. Zola (1991) avoided an “us and them” theorization of disability, and this helped him recognize the enormous implications of aging societies peppered with chronic illnesses for the development of the disability movement. He pointed out that the processes of aging link the interests of “the able-bodied” to those of “the disabled.” However imperative it may be politically to define people with disabilities as a minority group, it is a curious minority that will include us all—if not today, then tomorrow, or the day after that.
While it is clearly possible to theorize disability with medical categorization, poststructuralist theorizing about disability will reproduce the methodological and political individualism of the medical model unless it retains in its analysis a connection of the material forces that produce poverty, powerlessness, and discrimination. It is clear how work in both sociology and disability studies attempts in different ways to retain that connection.