|6 Pain and Resistance The Delegitimation and Relegitimation of Local Worlds|
|图书名称：Writing at the Margin: Discourse between Anthropology and Medicine|
图书作者：Arthur Kleinman ISBN：
出版社：Berkeley: University of California Press 出版日期：1995年
of care. Are these millions of sufferers responsible for their conditions? Should their care be rationed because it is not "really" necessary? Are they malingerers? Because most workers disabled by chronic pain earn considerably less from disability support than from their job, because many have taken years to grudgingly receive even the limited, stigmatized compensation they do win, and because many are seriously depressed by their disabled condition, it is hard to accept the standard claim of political conservatives that rewards for illness behavior directly encourage malingering (Osterweis, Kleinman, and Mechanic, eds. 1987). Psychodynamic, behavioral, and most social psychological conceptualizations, though they may at times help in the care of a particular patient or even a special group of patients, also appear seriously inadequate when applied to the broad, multiform class of chronic pain patients.
Social science research on chronic pain syndromes has in the past emphasized the obvious economic costs of these conditions—costs to the health care and disability systems and to industry and the economy generally. The professional discourse of economists and political scientists—both constructing the terms for political debate over disability compensation—dominate policy analyses of chronic pain (ibid.). Sociologists who have studied the institutional settings where pain is treated, such as hospitals, clinics, and rehabilitation units, have drawn attention to the negative consequences of the medicalization of pain: professional misuse and abuse of dangerous and expensive tests and treatments, patient experiences of enforced dependency and alienation, and the transformation of human experience into a bureaucratized object and even standardized commodity: the pain patient, for whom countless drugs and all sorts of standard and off-beat interventions are marketed as pain relievers (Kotarba 1983; Strauss 1970). Studies have repeatedly documented that pain patients feel biomedical practitioners routinely delegitimize the experience of their illness, pressing them to believe that it is not real or, at least, not as serious as they fear it to be (Hilbert 1984). Their subjective reports of distress are challenged and disconfirmed. They feel violated by practitioners, betrayed by biomedicine. And that enervating and deeply angering sensibility carries over into their family and work settings (Corbett 1986; Kleinman 1988a: 56–99).
The questions for anthropologists, then, are perforce diverse. They overlap with the topics that other social scientists have seized upon, yet reflect abiding interests in medical anthropology: the influence of the political economy on social construction of illness categories; the cultural patterning of the course of illness as a form of experience; the biocultural interactions between family, work, and the psychophysiology of the person in pain; the micropolitical use of symptoms as idiom of distress and rhetoric for conducting interpersonal negotiations; the ethnography of differing reactions to care across gender, ethnic, and class lines. The chapters in Pain as Human Experience (Good et al., eds. 1992) attest to this diversity of interests, exemplifying how even members of the same anthropological research group construct the subject of anthropological enquiry into chronic pain in rather different ways. Pain's sheer inexhaustibility as a subject for conceptualization and empirical study is a statement about how deeply its roots tap the sources and express the forms of human conditions. Pain cludes the discipline's organized explanatory systems as much as it escapes the diagnostic net of biomedical categories.
Against this background, I choose to address two sides of chronic pain: (1) how different intersubjective experiences of suffering get constructed, and particularly, in the case of pain in North America and China, how that construction turns on experiences of delegitimation and relegitimation; and (2) how one particular cultural interpretation—conceptualizing the experience of chronic pain as the embodiment of resistance —can represent the possibilities but also the limitations of anthropological interpretation of suffering.
I will draw on the illness experiences told to me by several of the patients in the Harvard study of chronic pain patients in urban North America to illustrate these aspects of chronic pain. Elsewhere (Kleinman 1988a), I have written extended illness narratives of three of the patients I interviewed in order to understand the varieties of suffering as moral experience. Here I sketch the outlines of several exemplary narratives in order to demonstrate how pain emerges in the micropolitics of social relations that have come under larger, menacing societal pressures as resistance to the flow of interpersonal experience. To further develop this line of analysis, I draw a comparison with chronic pain patients I interviewed in China (Kleinman 1986).
Local Moral Worlds and the Intersubjectivity of Experience
In his evocative, if enigmatic, thesis The Normal and the Pathological, Georges Canguilhem (1989), the middle link in the intellectual chain of remarkably influential French philosophers of science from Gaston Bachelard to Michel Foucault, argued that the central task for a cultural analysis of science is to disclose how a particular scientific practice constructs the object of its enquiry. Canguilhem reasoned that for biomedicine, at best only a partial science, this construction must begin with the determination of the normal from the pathological. In his formulation, this determination had to reflect two conditions: the norms that the dominant social group establishes to evaluate and, therefore, control behavior, and also the vital condition of abnormality in the biological processes that participate in experience. Thus, for Canguilhem, the question of disease/illness is simultaneously a violation of the normative (the moral structure of society) as well as of the normal (the enfolding of that sociomoral structure into the body of the individual—its embodiment ). The dialectical processes mediating the socially normative and the biologically normal are, for Canguilhem, the epistemological and ontological grounds for understanding health and disease.
I wish to rephrase this position to bring it in line with an emerging anthropological theory of human suffering, its sources, and its consequences (Kleinman and Kleinman 1991). What distinguishes the anthropological theory from Canguilhem's approach, and also from that of phenomenologists such as Helmut Plessner (1970) and Maurice Merleau-Ponty (1962), who have addressed a similar question, and from Bourdieu (1977, 1989), who has explicitly called for a dialectical resolution to opposing subjectivist and objectivist accounts of social reality, is its emphasis on the central importance of the microcontexts of daily life. This anthropological approach to the study of human suffering also emphasizes the crucial work of ethnography to describe how microcontexts mediate the relationship between societal and personal processes.
In the ethnographic perspective, those contexts of belief and behavior are moral worlds, where, inter alia, the experience of illness is constructed (Kleinman 1980, 1986, 1988a). Be they an East African village (a classical ethnographic context), an inner-city neighborhood in Istanbul, or a social network in North America's universe of plural life settings—these micromoral settings are particular, intersubjective, and constitutive of the lived flow of experience. They are not simply reflections of macro-level socioeconomic and political forces, though they are strongly influenced by such forces. The micro-level politics of social relationships, in the setting of limited resources and life chances, underwrite processes of contesting and negotiating actions. Yet microcontents are not for the most part so greatly fragmented or disorganized as to be lacking distinctive forms or coherence. What unifies divergent statuses and conflicting interests are the symbolic apparatuses of language, aesthetic preference, kinship and religious orientation, rhetoric of emotions, and commonsense reasoning, which, to be sure, derive from societal-level cultural traditions, yet are reworked to varying degrees in local contexts (Cassirer 1953–1957). These symbolic forms work through individual and collective involvementin community activities to construct the flow of experience. Hence, universal types of loss and menace—death, disease, disaffection—are made over into particular forms of bereavement, pain, and other experiences of suffering. For example, in a sensitive ethnography of the Kaluli of New Guinea, Steven Feld (1982) describes the construction of bereavement out of the memory associations of deceased persons with local places, the cosmology with its charter for teleology, the psycho-physiological resonance of culturally marked sounds with similarly shaped sentiments. The outcome is a world of bereavement that is experientially greatly distinctive, yet is not so completely foreign as to lose all resemblance to what is shared in human conditions.
I emphasize the moral processes in these worlds because it is the construction of what is most at stake for persons and families which assembles from contested preferences and differing priorities a sociosomatic linkage between symbol systems and the body, between ethos and the person. This linkage allows cultural meanings to provide structure for attention, memory, affect, their neurobiological correlates, and ultimately experience. Experience, seen in this structured way, is only in part subjective. A developing child in her or his cultural context is part of an ongoing flow of intersubjective feelings and meanings; in a sense, the child awakens cognitively and affectively within that flow. How to orient him- or herself, what to orient to, the child's sense of what is most relevant result from the development of moral sensibility to this social space. Ethnic as well as personal identity emerge in this process of entering into and finding a structured place within the flow of experience. Social status, gender, and the micropolitical ecology will inflect those identifications, as will personal temperament. We will become ourselves as well as participants at home in the world. And this plurality of influence is the basis of the novelty and indeterminacy of experience. But learning to live within and through the vital medium that emerges when symbolic forms interact with psychobiology places our lives squarely in the flow of things, bound to others and to the moral meanings that define a world of exigency and expediency.
And here, where persons encounter pain, is where we need to center the study of its sources and consequences. Thus, studying chronic pain patients means that each must be situated in a world. That world must be described, and the description must include an account of the experience of pain in the wider context of experience in family, workplace, and community. To understand what chronic pain signifies, what its experience is like, ethnographers must work out a background understanding of local knowledge and daily practices concerning the body and the self, and misfortune, suffering, and aspiration generally. And they must relate this background understanding to episodes of pain, courses of pain, and other aspects of the world of patients, families, and practitioners who are responding to the constraints of pain. They must also interpret pain in the trajectory of a unique life course as it is told to them in a narrative of suffering that emerges from their positioned engagement with a person in pain. And therefore they must include in the analytic focus pain both as a culturally constituted (biological) object for researchers as well as a biological heritage that constrains cultural meanings. This agenda, though daunting, should sensitize the researcher to the generative matrix of ordinary processes through which chronic pain becomes experience and contributes to the further "becoming" of experience.
Resistance and Its Modes
I must narrow the focus of this analysis because of the requirements for a chapter-length treatment of a still-too-large subject. I discuss chronic pain only with regard to how the relationship between pain and moral world is illumined by two rather different aspects of resistance, a current interest of many anthropologists that I find both promising and problematic. I employ the notion of resistance in the widely shared political sense of resistance to authority and in another somewhat special sense that emerges from my own theorizing about suffering.
Resistance as an Existential Process
In the course of experience, people come up against resistance to their life plans and practical actions (Scheler 1971:46). Resources are limited, often desperately so. The mobilization of force is inadequate, insufficient to achieve success in critical negotiations. And most predictable of all, misfortune strikes. Loved ones die; others fall seriously ill or become incapacitated. Crops or businesses or marriages fail. Aspirations give way gradually or, following a catastrophe, in a moment. Demoralization becomes desperate and poisons relationships. Loss, fear, menace derail life projects. For many, too many, vicious cycles of deprivation and oppression make misery the routine local condition. For those in the lowest socioeconomic strata, life is brutal. Persons are rendered wretched as a normal, day-to-day condition.
Bearing afflictions of the body, of the spirit, and of the social network and working through their distressing consequences are the shared existential lot of those whose life is lived at the edge of resistance. To this dark side of experience we give the name suffering, with all its moral and somatic resonances. Suffering, then, is the result of processes of resistance (routinized or catastrophic) to the flow of experience. Suffering itself is both an existential signifier of human conditions and a form of practical and, therefore, novel experience that undergoes extensive social elaboration (Kleinman 1988a, 1986).
Resistance to Political Power
In its more usual sense, resistance has the rather different meaning of resisting the imposition of dominating definitions (diagnoses), norms defining how we should behave (prescriptions), and official accounts (records) of what has happened. We resist, in the micropolitical structure, oppressive relationships. Such resistance may take the form of active struggle against dominant forces or a more passive form of noncompliance. The historical idea of resistance, such as that of the struggle of subordinate social groups with superordinate ones, conveys images of hidden motives, false compliance, malicious gossip, passive hostility, even sabotage (see Scott 1985:xvi, 290–291). I believe this idea of resistance, though seemingly greatly distant from the domain of health, can be, with appropriate modifications, applied to less dramatic daily experiences of suffering, including that of chronic pain patients. Most patients with chronic illness, which by definition cannot be cured but must be endured, do not comply entirely with their doctor's prescription. There is little doubt that this "weapon of the weak" may be at times one of the few forms of resistance to medical authority that is feasible, even though it is often self-defeating.
With this discussion as background, I turn to examine both types of resistance among patients with chronic pain who were interviewed in the Harvard chronic pain research projects. My purpose is to see how useful this approach is in deepening our understanding of the experience of chronic pain as human suffering.
The Delegitimation and Relegitimation of Experience
Stella Hoff is a thirty-one-year-old Ph.D. biochemistry researcher in medicine who has suffered severe pain for four years following a car accident.
Dr. Hoff is tall, angular, intense. A woman of few words, clipped accent, she is often bitingly sarcastic about others and herself. Dr. Hoff is elegantly but simply dressed; her movements represent her persona: quick, controlled, assured. In her white laboratory coat, surrounded by her research equipment and assistants, she looks the very epitome of precision and efficacy. A competent and conscientious scientist, she has also something distant, formal, even cold in her bearing. You need to meet her only once to appreciate a fixed expression of tension in her hyperalert eyes and thin, drawn mouth. The intensity of expression seems contentless: it could be fear, it could be hurt, it could be vulnerability. Once you know her story, there is little question what the intensity is about, however. It is her pain—constant, severe, dominating. Dr. Hoff is fighting each moment to remain in control, fighting not to give in, not to scream.
The words she uses to describe her pain are "exhausting, wretched, unbearable, agonizing." Nothing relieves this continuous pain. It is usually a five on a scale of ten in the morning, gets to seven of ten in the late afternoon when she leaves the laboratory, and in the evening is "at least" an eight. When the pain is greatly exacerbated, "it can be a twelve out of ten." The pain is much worse than any pain she experienced before and is regularly "excruciating." For her pain symptoms and the related problems, Dr. Hoff sees a primary care physician once every ten days on the average and specialist surgeons and pain experts. She has also consulted psychiatrists and several practitioners of alternative healing systems.
The pain and associated weakness affect most of her activities. It is extremely painful to work in the laboratory, though she does it. It is too painful to do yard work, clean the house, or cook anything involved or elaborate; she cannot play sports; and because of pain she avoids social activities. Pain keeps her in bed for most weekends each month. Over the eighteen months of follow-up interviews, Dr. Hoff's pain waxed and waned. On one occasion she had "very little pain" and reported "it is not interfering with my life very much." On another occasion the pain was "torturing and grueling," though it lasted at this intensity only a few days.
Dr. Hoff has insight into the personal meaning of her pain: "It has been totally devastating to me. Losses and what they have meant to me." She recognizes the pain has made her irritable, fearful, and overly attentive to bodily change.
Formal psychological testing showed Dr. Hoff to be experiencing considerable anxiety, irritability, and fear. She felt blocked in getting things accomplished, joyless, and she experienced rage, a desire to smash things, and a strong suspiciousness that others treated her badly, could not be trusted, and would take advantage of her if she did not exercise vigilance. Her psychiatric assessment was consistent with recurrent major depressive disorders for the past three years, for which she had received clinical trials of various antidepressants and psychotherapy, which had, in her words, "improved the depression but scarcely affected the pain."
Dr. Hoff's primary care physician felt frustrated by her care. He estimated seeing her a hundred times or more over the previous four years. He regarded her as a "classical chronic pain syndrome" patient, and noted that her marital life, work, and problematic experiences with the medical system had placed her in a situation of chronic stress, depression, and "self destructive" anger. He thought there was a strongly psychosomatic component to her pain. He thought of her as one of the most difficult patients he had treated in a very busy practice. He took that to be the reason that led doctors to "drop her." "Let's face it, Arthur," he said, "she is a problem patient. She's just extremely demanding, and she doesn't get better. I feel I need all my skills and then some to stay in the office with her when things are bad. Also being a biological researcher doesn't help."
Other physicians she consulted complained of the same problems. "You know," said one of the pain specialists,
Dr. Hoff, in contradistinction, sees herself as the almost silent bearer of a misery only she and her husband know. "I have worked when the pain is a ten," she states emphatically through lips drawn tightly together.
Dr. Hoff's anger at her professional colleagues is the other side of her anger at the pain and at herself.
Dr. Hoff is a laboratory researcher, an academic who does full-time medical research, who says she likes her work and is good at it,
She describes lab life as hectic, pressured.
Because of the time she has missed, Dr. Hoff has not received the promotion she believes she deserves, and she feels she has also missed out on professional opportunities, getting her name on papers coming out of the lab, traveling to meetings, and that even her salary has lagged behind.
Dr. Hoff is presently negotiating a more stable position:
Accomplished in academic studies, Stella Hoff expected success at a high level. "I had very romantic fantasies of being world famous." The harsh realization set in and was intensified after the accident.
Regarding her family, Dr. Hoff says with a mixture of sadness and bitterness:
In the course of many hours of interviews, Stella Hoff told me about another side of her illness experience, a side she said she had never spoken about with her practitioners.
Dr. Stella Hoff's experience of chronic pain spills over the frame of any single analytic focus. The richly human echoes and protean complexities quite obviously can (and probably should) be analyzed from a number of different perspectives. From the one advanced in this chapter, I note that the catastrophic onset of her misfortune delegitimates a world of experience that she associates with confidence, control, and success. It is a standard suburban, North American upper-middle-class world of academic achievement and promising professional career. Ambition, competition, and competence are personal dispositions structured within a moral terrain in which progress is regarded as only natural and the actual range of life choices in fact appears almost limitless. (Dr. Hoff came of age in the 1960s and 1970s, before the invention of the new tradition of American decline.) In this post-World War II era of great American wealth and empire, the social reality of the "people of plenty" structures the habitus (embodied cognition, affect, facial appearance, stance, and movement) of expectation of great success which reaffirms and recreates a social world preoccupied with winning—all components of the American upper-middle-class cycle of self-improvement and self-promotion. Winsome personality, speed of movement, blemishless skin, directness in speech, "standing tall," and gestures of power define this cultural habitus as an icon of the American way.
Yet, there is also the hidden fear of "falling from grace," which helps to focus attention on what is culturally most at stake: economic advancement and social mobility, a secularized soteriology (Newman 1989). Not to rise is a threat to social persona and social esteem; it is often experienced by members of the American middle class as a shameful moral weakness. Dr. Hoff, even before her catastrophic accident, had a gnawing uncertainty about whether she would in fact make it in the high-pressure, high-status stakes of science. She had looked into an alternative applied career as a technician, even though it was close to unacceptable to her disposition and the actual values of her world.
The accident, the injuries, the awful pain, and even the iatrogenic and frustrating medical care turned that world of experience on its head. In this single sense only, hers is like the experience of the multi-generational, inner-city poor, whose intersubjective world is structured by vicious, brutalized cycles of misery, where dispositions of hopelessness and hatefulness recreate and normalize the on-the-ground social reality—though her far greater resources and memory of a very different background augur for a vastly different future. Nonetheless, Stella Hoff does descend into a world of suffering whose bodily and affective processes become, and structure the further "becoming" of, painful social relationships in workplace and family setting. She exchanges a world of aspiration for a world of despair, but unlike the truly disadvantaged, she retains the possibility of reemerging. Stella Hoff loses one world to enter another. Her experience of delegitimation is intensified by the responses of practitioners, who contribute to the disconfirming sense that the symptoms are somehow too extreme, too troubling, too difficult to control. There is the suspicion of amplification or exaggeration owing to psychological problems and "stress." This latent, and at times even voiced, accusation challenges the validity of her illness experience and threatens to add the stigma of mental illness or even malingering. To demonstrate the serious burden of her suffering, the desperate desolation, Stella Hoff, like most other chronic pain patients, feels pressed to dramatize her symptoms. Her pain is twelve out of ten. This patently melodramatic device in turn confirms the suspicions of practitioners. The outcome is a poisoned clinical atmosphere in which trust and support—so central to the healing process—are replaced by suspicion, accusation, and ultimately a pervasive, mutually frustrating resentment that makes empathetic care virtually impossible.
The reverberations of this downward spiral include notably Dr. Hoff's literal experience of a spiritual fall from grace. Demoralization as an intersubjective process of suffering shared by patient, family, and practitioners eventually resonates in existential and teleological language. Here the technical rationality and scientific intellectual devices of biomedicine cannot contain the participatory reasoning of the patient who seeks to understand not how but why, not causal mechanism but ultimate meaning, not reason for treatment failure but chance for salvation (see Tambiah 1990:101–110). Thus, Dr. Hoff's story underlines the capacity of suffering as a transpersonal experience to cross the artificial divides between values and practice, religion and medicine, which have become so dysfunctional in the American health care system. Pain, then, almost becomes an icon of cultural delegitimation of our society's priorities and practices. Perhaps this is why the image chronic pain patients present is viewed as so menacing, why pain patients are cast so often as modern pariahs.
Can we fit the image of resistance into this analysis too? Resistance, in the sense of barrier or opposition to the flow of lived experience, clearly applies to Stella Hoff's traumatic injury and its desperate consequences. Yet I would argue that the other meaning of resistance—active or passive counterresponse to micropolitical dynamics and the macro-level forces that either intensify or moderate their effect—also can be made to apply. The trajectory of Dr. Hoff's pain, a particularizing social course of illness experience that is inimical to the biomedical claim of a natural course that unfolds from the disease process itself, spirals around her research work and the pressures of her academic career. Once in place, complaints of pain are readily absorbed into a language of complaint about the enormous pressures and perceived injustices of academic life. Pain is experienced as bridging somatic and social space. To a certain, limited extent, embodied pain sanctions opposition to the way the research experience is constructed, which provides an incremental gain in time and autonomy. Yet obviously these "gains" are small compared to the losses that Dr. Hoff experiences on account of her chronic pain. More impressively, her chronic pain offers Dr. Hoff an occasion to oppose medical practices that routinely disaffirm her experience of complaints as genuine and serious. And taking up an oppositional stance to authority also obviously resonates with her Huguenot heritage and her personality style. She has become, in the eyes of her professional caregivers, a "problem patient": a derogatory, even stigmatizing label, that in my experience often means the patient is making demands that the practitioner will not or cannot meet. In Stella Hoff's case, more than one hundred visits to a primary care physician over four years may well be so extensive a resort to medical care that few would see her needs as reasonable. But the source of the problem, notwithstanding the claims of her practitioners to the contrary, may well be the system of care and the actual experience of the care they provide. Dr. Hoff is insistent that her pain, including the fullness of her experience, be taken seriously. Her demands confront the inadequacy of the biomedical, including the psychiatric and psychological, approach to chronic pain. The recipient of iatrogenic treatment, she fights back, mobilizing knowledge and professional and financial resources that most pain patients do not have available. She turns even her spiritual crisis into an assault on the dehumanizing language of a treatment system that addresses neither ethical nor teleological questions. She resists the inappropriate extension of biomedicine's rational technical manipulations into the domain of deeply intimate human experience that calls for compassion and witnessing. And ultimately her suffering challenges simplistic American cultural orientations about youth, health, and freedom.
And yet, as much as the metaphor of resistance reveals those sides of the chronic pain experience that are often hidden under other social science rhetorics, other aspects of suffering seem obscured or perhaps even distorted by this analytic schema. There is a definite limitation to the applicability of this perspective, and that limitation indicates a more general problem with the anthropology of suffering. Before I examine that problem, however, I will provide a brief account of another exemplary experience of chronic pain from the Harvard study. I will then adumbrate, again briefly, chronic pain patients' experiences from the research I have conducted in China, to draw a cross-cultural comparison.
Mary Catherine Mullen is a thirty-year-old married woman from a poor Irish American family in Boston's South End, a bastion of Irish working-class culture. She has suffered from severe "migraine" headaches for five years. Greatly overweight, with a strong family history of headaches and diabetes, Mrs. Mullen fears that her headaches are not getting better, in spite of various medical treatments, and that she will have to endure them for the rest of her life, as has her mother. Her headaches are associated with a depressed and angry mood for which she sees a counselor weekly, and which has transformed her, she holds, into someone quite different from the shy, smiling, self-effacing person she was as a child and adolescent. Mrs. Mullen attributes the onset of her headaches to her husband's alcohol abuse and the subsequent verbal and physical violence he directed at her, which made him, in her words, "a real Jekyll and Hyde."
When the headaches began, Mrs. Mullen was contemplating divorcing her husband. She was desperate to protect herself, and her then five-year-old daughter, from her husband's violence. She also felt trapped by her lifelong diffidence and incapacity to express her needs. Her husband's inability to find or hold good employment meant that they "lived from one paycheck to the next." The feeling of financial insecurity infiltrated other aspects of their life. There were no medical benefits; they were forced to stay in a room in her mother's house, which was undesirable to all, and Mrs. Mullen had to continue to work in a low-level, dead-end job in a local department store which she detested. Finally, she had the terrible apprehension that her husband would end up physically abusing their daughter, just as she had been abused by her own mother.
Her response to this intolerable life situation was a cycle of dysphoria, from desolate depression to explosive anger. When depressed, usually at a time her husband was drunk, she became deeply hopeless and virtually immobile—unable to speak out or even act preventively to protect herself or her daughter. When angry, usually when her husband was sober, she would "lose control": scream, throw things, and shout out a litany of wrongs that oppressed her. She even feared that she herself would eventually batter her daughter, thereby copying her own mother, for whom she had come to have an inexhaustible well of anger.
Mary Catherine Mullen was the illegitimate first child of Maggie O'Leary, described by Mary Catherine as an "irresponsible, rebellious" teenager who had run away from a large family of hard-drinking Irish immigrants, and a much older man, who passed through Maggie's life in several intense weeks and then disappeared utterly. Her mother, whom Mary Catherine claims vehemently was "incompetent to care for me," virtually abandoned Mary Catherine, placing her with her own mother, while she wandered in a near alcoholic delirium from man to man. Finally, when Mary Catherine was six, Maggie O'Leary reappeared suddenly, without prior notice, one evening and demanded that her child be returned to her. Despite Mary Catherine's pleas that she remain with her grandmother, whom she had come to regard as her mother, she was forcibly repossessed and immediately entered into her mother's unstable, peripatetic life. She remembers these years of childhood and early adolescence as lacking in all security. She felt unloved and dangerously threatened by her mother's physical abuse. From this time onward, Mary Catherine felt a deep hatred for her mother. At age fifteen she had a sexual affair with an older laborer, which resulted in an abortion, about which she continues to feel guilt. She now believes that she undertook this relationship and dropped out of school in order to break away from her mother and at the same time "to get back at her for all she had done to me." Soon after the abortion, she began to date and quickly married her current husband.
It is an abiding source of shame for Mrs. Mullen that the young couple eventually had to "beg" her mother to permit them to move into her house because of lack of funds to live on their own. At the time she felt trapped in her marriage, her work, and in her mother's home. She watched impotently as her mother took advantage of the situation, treating her like a maid and allowing Mary Catherine and her family no privacy. In spite of her growing anger, she felt incapable of defending herself by talking back to her mother or husband. "If something is on my mind, I can't say it, fear hurting someone's feelings. Can't say no to people."
Over the course of months, Mrs. Mullen descended into despair. She thought of her life as hopeless, and increasingly she felt inadequate and worthless. At one point she thought seriously of suicide. Then the headaches began. So severe were they that she felt compelled to withdraw to her bedroom, where she locked the door, lay on her bed, and remained in the dark until sleep obliterated her pain. Because of her pain, and in spite of the serious financial repercussion and in the face of angry protests from her husband and her mother, Mrs. Mullen quit her job. Within weeks, she determined that the headaches were so severe that she could no longer do housework or cook for her family either. Her husband took over these activities grudgingly, but over time he became more solicitous and helpful. Despite the absence of health insurance, Mrs. Mullen insisted on visiting physicians, including pain experts, who diagnosed migraine, tried her on various treatments, none of which has controlled the pain, and prescribed bed rest and avoidance of "stressful" activities. She further insisted that her husband and mother assume financial responsibility for these medical visits.
As Mrs. Mullen's pain experience deepened, her mother, like her husband, became sympathetic and began to help with the housework. Her husband quit drinking. Her mother showed her affection, Mary Catherine asserts, "for the first time in my life."
Although the headaches have continued over the five years, they have slowly begun to diminish in intensity and to become more "tolerable," though at times, particularly when Mrs. Mullen is "under stress," they return to the former level of severity. The depression has lightened, but the sense remains of a deep pool of hate that erupts into angry outbursts. At these times, Mrs. Mullen will "throw up" to her mother accusations about the past. This is the first time in her life, she says, that she has been able to say the things she always needed to say to her mother but couldn't: namely, how she grew up terrified, feeling unloved, and greatly vulnerable. When, at the times she is not in pain, she tries to discuss these problems, her mother still turns away from her, "she can't handle it." But during Mrs. Mullen's explosions of rage, her mother is forced to listen.
The analytic language of delegitimation, relegitimation, and resistance in the interpersonal world of experience seems particularly apt in interpreting Mary Catherine Mullen's experience of chronic pain. Of course, the literature on chronic pain contains numerous accounts of the influence of family processes on the onset and course of symptoms. In fact, this is arguably the major causal pattern that behavioral psychologists diagnose and treat (Sternbach 1978; Turk et al. 1983). Psychoanalytically oriented practitioners and family researchers speak of the "gains" of illness and include in that category the explanation that pain and other chronic symptoms can restructure family relations and communication patterns, which clearly has taken place in Mrs. Mullen's household. Yet, the implication is often that either the circumstances are determinative as behavioral operants conditioning individual behavior, out of awareness of the sick person, or that there is a rational calculus by means of which individual decisions are made that reflect a shift in cost/benefit, a kind of malingering (see relevant chapter in Burrows et al. 1987 and also Turk et al. 1983). I find these implications unsatisfactory and am disturbed by the behaviorist language that would have us believe that Mrs. Mullen is either an ingenuous automaton or a blatant manipulator. Ten hours of interviews with Mrs. Mullen, corroborated by research and clinical work with many patients with chronic pain, make me greatly suspicious of the behaviorist discourse, which I find stereotyped, overly focused on pain as a problem of an individual , and dehumanizing.
In the perspective I have advanced in this chapter, Mary Catherine Mullen is born into a delegitimated world. Illegitimate, abandoned by her mother, raised by her grandmother in a family setting where she was viewed as tainted by her mother's sinful ways, Mary Catherine's early socialization disaffirmed her person and placed her in an anomalous relationship with her grandmother and others. She bore a sense of shame and also carried the idea that she was not good enough to receive her mother's love. When her mother precipitously removed her from her grandmother's home, she experienced a major loss and second transformation of her world. That transformation again encouraged an experience of delegitimation. Her mother abused her emotionally and physically. She also forced Mary Catherine to accept the name of the man to whom her mother was then married. For a while Mary Catherine had two family names: her mother's and her stepfather's. The confusion in identity was a simulacrum of her growing sense of tangentiality to her world. In that world, she repeatedly heard her mother excoriate her origin and personality. Disaffirmed and disaffected, she grew into adolescence feeling worthless. She felt a lack of efficacy with others and alienated from her family.
A common idiom of distress was her mother's headache. When her mother had headaches, which were frequent, Mary Catherine was expected to take care of the other children and her stepfather. Her mother's withdrawal and lack of affection were justified by the headaches, as were her irascible disposition and angry outbursts. Thus, Mary Catherine experienced headaches as a rhetoric of complaint for expressing hostility and controlling others.
The experience of delegitimation was reproduced in her relationship, in the early part of the marriage, with her husband. She seemed unable to control his drunken behavior and its violent consequences. She also seemed unable to effectively negotiate with him over their limited resources, much of which supported his alcohol abuse. After the birth of their daughter, she felt more intensely still the disaffirmation of her experience as wife and mother. Forced to move into her own mother's home, owing to her husband's failure as a provider, she saw herself as coming full circle in a lifelong cycle of despair. Mary Catherine's great obesity, about which she felt helpless and ashamed, became a bodily index of her alienated social status, a habitus structured out of the stigmatized position, poor self-esteem, and a self-defeating sense of inefficacy in her world. This alienation of habitus in turn creates the negative dispositions and interactions that perpetuate that world.
The experience of pain in a world without security (in family, job, finances, or neighborhood) is what distinguishes chronic pain among the poor and the oppressed. When one cannot marshal resources, symbolic and instrumental, because they do not exist or one's access to them is obstructed, the very idea of control becomes untenable. The normal, everyday routinization of misery, furthermore, can be experienced as bodily pain. As a result, the confluence of this source of pain and bodily pathology makes it impossible for the afflicted person to determine what "causes" pain to worsen and what will limit or remove it. Pain cannot be made meaningful any more than can the rest of life. The absence of control as well as legitimacy means that to survive, those patients who lack resources yet are exposed to great pressures must conduct the moral equivalent of a life-and-death struggle. Pain becomes the bodily component of so fundamental an experience of suffering that the local world is in effect a world of suffering. Pushed up against the limits of control and meaning making, poor and oppressed patients may take up whatever is at hand to respond to adversity that can no longer be easily assigned to either medical or nonmedical sources. Thus, Mrs. Mullen's pain also represents a kind of solution, albeit compromised, to the consequences of dwelling in a world of suffering.
The development of chronic pain, whatever its sources, sanctions a transformation in her experience. The pain becomes a means of resisting her husband's irresponsibility and her mother's cruel manipulations. Her sense that her world is not her own, that she has no central, secure place in it, is replaced by illness behavior through which Mrs. Mullen, with surprising energy and efficacy, moves to the center of that world and even comes to dominate its flow. The severe migraine headaches authorize a relegitimation of intersubjective experience. They are in fact emblems of a new way of engaging in the stream of experience. Mary Catherine Mullen's episodes of headache might even be thought of as a kind of social dissociation, from a hesitant, marginal orientation to her world, in which she is absorbed into the flow of practical actions effected by others, toward an assertive, central orientation, from which she reorients the flow of aggrieved sentiments and practices. The relegitimation of the world authorizes her access to the moral devices of accusation and restitution. Of course, there is also evidence that Mrs. Mullen's resistance has certain negative effects, real and potential, such as expensive medical bills, unemployment, and perpetuation of a cycle of somatized distress and greatly disruptive explosions of rage into which her daughter may become the next conscript. Also, it is unclear how long such a newly invented ritual of behavioral reversal can keep going without straining the social ethos to the point of breakdown. For these reasons, it is difficult to know, at this point, if Mrs. Mullen's form of resistance in the politics of family should be regarded as effective. What is more certain is that for poor working people from deprived backgrounds with few life chances and greatly limited resources, who lack reserves to respond to crises, even the dubious efficacy of embodied resistance may mean the difference between enduring and succumbing. In the exigency of routinized hurt and grievance and demoralization, simply to continue not to be overwhelmed may be a kind of desperate victory. Pain, like other forms of suffering, is resisted (Scott 1990).
An even clearer example of the possibilities, and limits, of the moral efficacy and practical uses of resistance via chronic illness is provided by the research I have conducted in China among those deeply affected by the Cultural Revolution (Kleinman 1986; Kleinman and Kleinman 1991). In this research, Joan Kleinman and I encountered such frequent examples of neurasthenia symptoms sanctioning major changes in work and family, in relation to the local Communist authority structure, that we concluded that chronic, disabling bodily complaints were a source of power in Chinese work units. But it was also obvious that social categories of individuals—those with bad class backgrounds, women, youths who had been Red Guards and had been "sent down" to remote rural areas—strongly influenced who had need for such power and who could exercise it under particular conditions. Moreover, delegitimation meant something very different in the Chinese context. Our research subjects, like tens of millions of their Chinese compatriots, experienced the moral delegitimation of Communism in the fiery chaos of the Cultural Revolution. Their communities, and the societal political system of which these are part, had lost moral legitimacy, and even the sources of social efficacy were undergoing dramatic change.
The ancient spine of Chinese society, the bureaucratic order, dislocated; factions fought each other in large and small work units, sometimes creating civil wars in the cities; families were broken; systems of communication, transportation, justice, public safety, health, and welfare fragmented. Parents were attacked by children; teachers were assaulted by students; Red Guards broke into homes, looted their contents, beat their occupants, at times to death, and destroyed precious objects such as ancestral tablets, heirlooms, and books. By the late 1970s, though order was restored by the army and the party, cynicism, demoralization, and alienation were widespread. Delegitimation spread from a crisis of confidence in the political system to a wholesale questioning of indigenous cultural institutions.
From the end of the Cultural Revolution until the beginning of the 1980s, the state allowed expression of public loss and anger. Yet, when these popular expressions began to coalesce into the early phase of a movement for democratization, they were attacked. Thus, the social memory of the Cultural Revolution was silenced or reworked in an authorized version, a "public transcript" that located blame in the Gang of Four and their ultra-leftist associates, while exonerating the party, the state, and their local representatives. Each urban work unit, each rural village was left to rebuild its tattered social structure. Bitter memories, hatred of leaders and coworkers, burning grievances, and inflamed traumas were all officially suppressed. A single authorized version of the past was fabricated, collective grieving was brought to an end, and the people were ordered to get on with the projects of socialist reconstruction and, later on, economic reform.
By 1980, the delegitimation crisis in China had reached epidemic proportions; it challenged the social organization of communalized work, the foundational Confucian code, even the family—the cultural grounds of trust and achievement. This political and cultural crisis of delegitimation intensified during the economic reforms of the 1980s, especially with the brutal suppression of the Democracy Movement at the end of the decade. Underneath the rosy picture of China's economic successes, the crisis persists up to the present as the dark and dangerous side of China's "modernization."
Between the late 1970s and 1980, there was a brief period of national preoccupation with victims' accounts of their trauma—a brief literary flowering that is called the literature of wounds or scars. As noted, by 1980, China's political leaders had determined that these morbid stories, many of which had a critical edge, had gotten out of hand. Yet another campaign was initiated, and the crackdown ended expressions of social criticism through biographies of the traumatic effects of terror and loss. Thus, in the early 1980s when we were conducting our research, we were impressed by the way that retelling narratives of sickness, especially of neurasthenia—a common syndrome of chronic pain, sleeplessness, fatigue, dizziness, and related physical symptoms, as well as sadness, anxiety, and anger—authorized social memory and thereby enabled oblique criticism of the Cultural Revolution and the political process generally, which our informants regarded to be the origin of the complaints.
In their narratives of illness, patients' remembrance of bodily complaints broadened into more general stories of suffering that integrated memories of menace and loss with their traumatic effects (demoralization, fear, desperation) and with their sources (criticism sessions, beatings, prison, exile). Bodily memory, biography, and social history merged. The bodily axis of moral processes of social experience aggregated historical event, symbolic meaning, and social situations. The memory of bodily complaints evoked social complaints that were not so much "represented" as lived and relived (remembered through experience) in the body.
Relegitimation has failed at the macrosocial level in China, both through the brutal repression of the Democracy Movement and in the failure of the Chinese Communist Party to reform. Yet, at the regional and local levels, various kinds of relegitimation efforts have occurred, with varying degrees of success. Hence, in Guangdong and Fujian provinces, and elsewhere along the coastal edge, "market reform" has continued virtually unchanged, substituting material success, "getting rich," for erstwhile values, whereas in other, poorer, more violated provinces a Communist counterreformation was under way in 1992. Most notably, in many work units and villages, there is a unified opposition to central and regional directives, and informing on others and collaborating with the entrenched political leaders are much less prevalent than during the Cultural Revolution. This is the case, it seems, even within the Communist Party itself. In this sense, the breakdown of moral authority is so pervasive that China, even in the midst of enormous economic growth, can be said to be in an advanced stage of a cultural delegitimation crisis, and it is uncertain what will follow. Yet what is certain is that resistance through somatic symptoms and disability has not been an effective means for either expressing collective opposition or ushering in new forms in the moral order. Even on the personal level it has been more self-defeating and socially unavailing than effective in reconstructing the order of experience.
For example, a middle-aged teacher in a rural town in Hunan had withdrawn into reclusive existence, mourning her losses in the political devastation of the whirlwind, under the authorization of her neurasthenic complaints. Her withdrawal had no effect on the local political situation, but in fact worsened her family problems and deepened her own feeling of desolation. Another neurasthenic patient, a very competent Hunanese school administrator, carried her neurasthenic depression and pain as publicly recognized scars of her personal losses in the Cultural Revolution. Because of her complaints, she had been engaged in negotiations with the leaders of her work unit to either take early retirement or have removed an old cadre who blocked her administrative reforms. Yet her symptoms only made her situation more desperate and did not alter the political impasse in the work unit. A third sufferer of headaches, Hu Chengyeh, responded to a lifetime of discrimination because of his stepfather's landlord status, worsened for him personally by the Maoist political campaigns, by developing a defiant isolation and irascible persistence in seeking retribution for his chronic pain. Behind the physical pain the sense of bitter injustice was so strong as to be unmistakable. While his obsessive quest for "remedy" ultimately improved his work situation, it greatly worsened his family life and his hatred. The result was a corrosive political silence replaced by louder and louder physical complaints that deepened his alienation. (These and other stories of Chinese survivors of the Cultural Revolution who suffered from neurasthenia are described at greater length in Kleinman 1986:105–142.)
The Limits of Resistance as an Anthropological Interpretation of Suffering
Perhaps I have not done full justice to the model of resistance. Because the research I conducted in Boston involved the elicitation of personal and family narratives of pain and did not include participant observation in their communities, my access to worlds of pain was constrained. This is an important constraint for an interpretation of intersubjective experience, inasmuch as I have had to assemble that interpretation from personal accounts and brief home visits with family members. In spite of this methodological restriction, I do feel this chapter contains evidence of the utility of the analytic framework in the anthropological study of the social experience of chronic illness. Its chief value is as an operational device, which, as I have tried to illustrate, can facilitate analyses of the local mediation between microsocial psychological processes and the macrosociopolitical context. Johnathon Parry and Maurice Bloch (1989:1–32) contend that the short-term cycle of transactions that individuals undergo parallels the long-term cycle of transactions at the societal level: together they reproduce cultural forms and social structures. In the perspective that I am advancing, the connection between these short- and long-term cycles occurs within the medium of intersubjective space where moral order, affective ties, and bodily processes are integrated into a form of experience. The model of resistance, and the closely related concepts of moral delegitimation and relegitimation, offers only one perspective on this psychocultural mediation. Yet the limitation of this model, I believe, can be generalized to other anthropological approaches to the study of human suffering.
I characterize that limitation in the following terms. Just as anthropological accounts fault biomedicine for its failure to respond to the teleological requirements of suffering—those existential and spiritual questions of what is most at stake in human experience which query the ultimate purpose of living—so, too, do culturalist accounts, which are so effective in diagnosing the inadequacy of natural science renditions of human conditions, fall prey to a type of social scientific appropriation of suffering. Thus, interpreting chronic pain as resistance, or for that matter as discourse, gives primacy to the search for meaning over the rest of experience. The interpretive requirements of suffering for theodicy—namely, the struggle of rebuilding a coherent account of why misery should exist in the world (see Weber 1978:518–529)—are viewed by many anthropologists as the core reality of suffering. But, as Veena Das (1994) demonstrates in accounts of the tragedy-filled lives of Indian survivors of the Hindu-Sikh ethnic conflict and the Bhopal disaster, most of those who encounter deep suffering experience a chaotic, aleatory world. The wrenching process of having to bear the awful consequences of loss, menace, and the brutality of everyday deprivation are experienced not as theodicy but as terror and desolation and, for all too many, as the abulia of alienation. Whatever its particular features, the intersubjective experience of suffering is so various, so multileveled, so open to original inventions that interpreting it solely as an existential quest for meaning, or as disguised popular critique of dominant ideology, notwithstanding the moral resonance of those foci, is inadequate. It may distort this most deeply human of conditions.
For an ethnography of experience, the challenge is to describe the processual elaboration of the undergoing, the enduring, the bearing of pain (or loss or other tribulation) in the flux of intersubjective engagements. The ethnographer needs to fasten onto the overriding practical relevance of experience for those who engage in it, for whom something (though not necessarily the physical complaint) is almost always exigent. At the same time, the ethnographer must struggle not to dehumanize the stream of experience through professional deconstructions that are totalistic and thereby claim an authoritative knowledge of determinants and effects. Such an interpretation must be invalid because it denies the uncertainty and indeterminacy and sheer novelty of human engagements. Experience is emergent, not preformed. It changes. It goes on and on. The ethnographer must be cautious about creating an end that is artificial, an illusion of a finality that is not to be found in intersubjective space, where the echoes of embodied memories reverberate even after a death. The cultural constructionist's icon can be as inhumanely artifactual a characterization of experience, then, as is the pathologist's histological slide.
Properly deployed, the model of resistance must avoid these misuses and abuses of anthropological interpretation. That means that it probably can never be entirely satisfying as an explanatory account of human suffering. And perhaps that is as it should be. For when pain is configured as suffering, it evokes intractable, inexhaustible existential questions. These questions are worth pursuing to the extent that we can better understand human conditions or provide assistance to sufferers but are as vulnerable to reductionist social scientific accounts as to biomedical ones. And here anthropologists of pain find themselves in an ethical position roughly similar to that of the clinician. For both, it is essential first to do no harm. For both, the moral requirement of engaging people who suffer is to struggle to transcend limited and limiting explanatory models so as to witness, to affirm their humanity. Anthropologists, of course, are professionally trained to engage religious themes; clinicians are not. Yet that professional training can also distance the ethnographer from this existential obligation of human conditions. For both anthropologists and clinicians there may come a time when, like the grieving author of the ancient Lamentations over the Destruction of Sumer and Ur (Mintz 1984:22), they need to admit, "There are no words!" It is in this spirit that I adumbrate resistance, delegitimation, and relegitimation of local worlds—admittedly inelegant yet useful words—as figures to bring forward aspects out of the complex, collective ground of chronic pain that have heretofore been obscured. This is yet another side of a subject that is best dealt with, not by insisting on a single "objective" interpretation, but by juxtaposing multiple, positioned, intersubjective perspectives.
|【字体：大 中 小】【打印】【关闭】|