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Health, Risk & Society

Health, risk and social suffering

University of Kent, Canterbury, UK Version of record first published: 23 Aug 2006.

To cite this article: Iain Wilkinson (2006): Health, risk and social suffering, Health, Risk & Society, 8:1, 1-8 To link to this article: http://dx.doi.org/10.1080/13698570500532256

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Health, Risk & Society, March 2006; 8(1): 1 8

Editorial

Health, risk and social suffering

IAIN WILKINSON
University of Kent, Canterbury, UK

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Abstract This editorial provides a summary account of research and writing on social suffering. Some of the ways in which this body of work might be approached within the eld of health risk research are outlined. Some of the criticisms that might be directed towards the paradigm of risk on the occasions when this is used to account for lived reality of human suffering are reected upon. In this context, further lines of inquiry into the ways in which social scientist venture to write upon, and bear witness to, experiences of pain, misery and distress are initiated. Each of the contributions to the special issue in terms of their distinctive approaches to these concerns is introduced.

Keywords: Health, risk, social suffering, sociology, methodology

Introduction The topic of social suffering incorporates a wide range of interests. In the sociology of health and medical anthropology this is associated with efforts to broaden the biomedical conceptualization and treatment of pain so as to include the socio-cultural components of this experience (Kleinman 1988, Kleinman and Kleinman 1991, Morris 1991, Delvecchio Good et al. 1992, Bendelow and Williams 1995a, 1995b, Frank 1995, 1996, Benatar 1997, Bendelow and Williams 1998, Morris 1998, Frank 2001, Bendelow 2000). In this context, researchers work to make the cultural form and social signicance of human suffering a part of the diagnostic language of Western medicine and thereby an object of clinical and caring concern. However, interest in social suffering extends beyond conventional domains of health research and medical practice into wider arenas of sociological controversy and political debate. In France, social suffering is perhaps more likely to be recognized as a key point of reference for the ethnographies conducted by Pierre Bourdieu and colleagues into the everyday miseries suffered by individuals immersed in processes of fragmenting social and economic change (Bourdieu et al. 1999). Here the term is offered as part of the groundwork for a distinctive approach to social research; one that actively seeks to bear witness to the cumulative sufferings of everyday life that so often elude the conceptual grasp of disciplines in thrall to the scientic authority of objective terms of measurement (Bourdieu 1999a). This concern to devise sociological and anthropological scripts for bearing witness to lived experiences of suffering is also to be found in the works of the Indian
Correspondence: I. Wilkinson, School of Social Policy, Sociology and Social Research, University of Kent, CT2 7NF, UK. E-mail: [email protected] ISSN 1369-8575 print/ISSN 1469-8331 online 2006 Taylor & Francis DOI: 10.1080/13698570500532256

I. Wilkinson

sociologist Veena Das and American anthropologist Nancy Scheper-Hughes; albeit with a focus on more acute forms of afiction derived from war, apartheid, death, dying and extreme poverty (Scheper-Hughes 1992, Das 1995, 1997a, 1997b, Scheper-Hughes 1997, 1998). Here, research and writing on social suffering is heavily associated with attempts to align the conduct of social science with the politics of humanitarianism. Indeed, it is through the work of the Harvard physician, anthropologist and human rights activist, Paul Farmer, that reference to social suffering has acquired some politically forceful associations. For Farmer, it is by dwelling on the embodied experience of people suffering from diseases of poverty that grounds are uncovered for engaging in public debate over the morality of the structural conditions that systematically reproduce the material and social deprivation of the so-called Third World. By concentrating upon the brute facts of social suffering, he works to bring a human face to the structural violence experienced as a result of the logic in the design of a global capitalist economy (Farmer 1997, 1999, 2005). The scholarly and public debates inspired by these developments have gathered to a point where social suffering has been adopted as a trans-disciplinary heading for a movement to reform the language and practices of social science, so that a fuller acknowledgement is given to the means by, and extent to which, conditions of modernity are liable to exacerbate the hurts we inict upon one another (Graubard 1996, Kleinman et al. 1997, Das et al. 2000, 2001, Wilkinson 2005). It is now possible to identify a distinct set of research areas as comprising the major developments in the eld. First, discussions have focused on the relative merits of ethnography as the research method best suited to give voice to the lived experience of people in suffering; and for this to be regarded as a core component of the critical praxis of research and writing on social suffering (Bourdieu 1999b, Kleinman 1999, Forbes and Wainwright 2001, Wacquant 2004). Second, a considerable amount of attention has been directed towards the role played by mass media within the cultural production and reproduction of ethical frameworks for interpreting the social/moral meaning of the suffering of distant others (Tester 1994, Kleinman 1995, Kleinman and Kleinman 1997, Ignatieff 1998, Boltanski 1999, Moeller 1999, Tester 1999, Cohen 2001, Tester 2001, Sontag 2003). Finally, researchers have been particularly interested to explore the potential for some manner of emotional healing and social recovery to take place in the aftermath of events of extreme suffering through people being equipped with the cultural resources to express and/ or revise the meaning of their experience; indeed, here it is even suggested that narratives of social science might be designed to play a positive role in this process (Kleinman 1988, Kleinman and Kleinman 1991, Scheper-Hughes 1998, Skultans 1998, Das et al. 2001, Hurwitz et al. 2004, Das and Kleinman 2001). All these researchers share in an elemental point of understanding; namely, that we are living under social and cultural conditions that provide no adequate sense or sufcient meaning for human suffering. While at every point immersed in debate over the many contrasting ways in which social circumstances and cultural meanings moderate experiences of pain and at the same time condition our imagination for the afictions for others, it is generally acknowledged that there is something inherently unspeakable and beyond representation in suffering (Frank 2001). There is no agreement as to the character of the social and cultural processes that give rise to this shared understanding and sensibility. Nevertheless, it is generally assumed that it is through a pronounced decit of cultural meaning that suffering acquires a great deal of its power to damage and harm human life; and that it may be via some process of cultural reformation that people arrive in a position to live with and beyond this experience. Indeed, with regard to this particular matter, some of the most emotionally charged and morally laden disputes take place. While some maintain that we should be alarmed by the extent to which all forms of cultural expression are

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Health, risk and social suffering

ultimately bound to trivialize the reality of suffering to a point that is morally objectionable, others are inclined to emphasise the ways in which an attitude of silence can be even more degrading for those desperate to gain public recognition for extreme experiences of pain, damage and loss (Wilkinson 2005: 16 45). There appears to be no end to these dilemmas. Here it seems that the problem of suffering amounts to a terminal aporia for human thought and moral behaviour (Ricouer 1995); at the same time, this appears to be a potent force of cultural, social and technological innovation. Max Weber worked hard to highlight the extent to which the evolution of religious ideas was dynamically related to questions of theodicy; indeed, at various points he identies this as being more signicant than any other factor within the cultural development of the forms of rationality that intensify modern processes of secularization (Weber 1948a: 123, 1948b, 1948c, 1966: 139). In Webers account, the problem of suffering is an historical constant within the social formation of cultural worldviews and different courses of rationalization (Tenbruck 1989). If this is the case, we may well nd that as social science engages with questions of sociodicy that researchers become more forcefully engaged with fundamental questions of origins, meaning and purpose (Morgan and Wilkinson 2001). In literature on social suffering, writers often make explicit their concern to radically modify and/or transcend conventional forms of expression and understanding. In this, as in every other context, the problem of suffering appears to precipitate a crisis of personal and social meaning. Indeed, both Arthur Kleinman and Vieda Skultans bear testimony to the extent to which the very attempt to write about the lived experience of human suffering serves to intensify an attitude of critical reexivity towards their own role within the research process as well as their principle terms of inquiry (Kleinman 1999, Kleinman and Kleinman 1991, Skultans 1998: 17 34). Accordingly, we might anticipate that any movement to develop a sociology of suffering will also inspire critical debate over the presiding values and interests of this discipline (Wilkinson 2001a, Wilkinson 2005). What does all this imply for the sociological study of risk and, more specically, research concerning the conjunction between health and risk? My own research interest in social suffering was initiated by the observation that, more often than not, many of the problems, panics and alarms that are framed for sociological attention in terms of risk involve people being made vulnerable to experiences of suffering. More directly, matters of risk tend to be presented for public attention via graphic portrayals of bodies in pain and images of people in acute states of distress. In this context, I argue that the social meaning of risk is more intimately related to the harms caused by taking risks, rather than risk per se. I am troubled by the suspicion that, when accounting for the human signicance of risk, we would do better to concentrate upon the multiple ways in which problems of suffering are culturally expressed and socially represented rather than focus on individual aptitudes for probabilistic thinking and relative capacities for processing technical information. Accordingly, one might begin by approaching research and writing on social suffering as a resource with the potential to enhance our understanding of how people, perceive, experience and respond to risk in everyday life. While writers such as Mary Douglas have already raised the suggestion that contemporary usage of the language of risk is essentially akin to age-old matters of theodicy, this has yet to inspire much scholarly interest on how the problem of suffering is constituted as forms of social experience (Douglas 1992). In this respect, I suggest that by engaging with the phenomenon of social suffering, we are presented with opportunities for sociological understanding that have the potential to serve as a major compliment to current research on risk in society. Arguably, it is already in the context of health research that the language of risk has been adopted as a surrogate means to bring public attention to human suffering. For example, in

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her study of the ways in which sex workers manage health risks at work, Teela Sanders uses this as a means to elaborate upon the range of harms and forms of violence experienced by female prostitutes (Sanders 2004). Accordingly, the analysis of risk is identied as a means to bring sociological attention to matters of physical danger as well as those of emotional trauma. In a similar vein, where Nina Hallowell works to expose the affective dimensions of risk, her intention is to emphasise the extent to which the biomedical labelling of a person as at risk of dieing of cancer is liable to cause a great deal of personal suffering (Hallowell 1999, Hallowell et al. 2004). Once again, by exploring the ways in which women aged 35 and over interpret and respond to the ways in which health professionals communicate the risks of pregnancy, Mette Henriksen and Bob Heyman aim to draw our attention to the high levels of distress experienced through this process (Henriksen and Heyman 1998). These are all examples of where reference to social suffering rather than risk could serve to advance both the analytical and moral concerns with which these writers account for their research. Rather than address human suffering as a latent effect or unintended consequence of risk, why not give explicit attention to the problem of human suffering in its own terms? Is it really worth stretching the analytical domain of risk to the point where knowledge of risk becomes a pseudonym for the experience of suffering? Perhaps the study of risk as well as the recognition of human suffering would be greatly augmented by the effort to maintain each as analytically distinct from the other? I would suggest that, once again, the answers to such questions require that we reect upon the social meanings of the concept risk as well as the cultural signicance of its widespread adoption as a category of analysis in contemporary social science and health research (Skolbekken 1995). What should we make of the multiple analytical investments that are now placed in this term? Certainly, there is (at least) one disturbing answer to this question to be found in the literature in social suffering, where writers tend to be particularly sensitive towards the negative impacts of rational-technical discourse upon our grasp of human experience. Here it is argued that we should be particularly wary of the extent to which the cultural grammar of social science works to remove the painful realities of human suffering from its terms of analysis. For example, Arthur and Joan Kleinman claim that while economic indicators of suffering, such as the World Health Organizations metric of Disability Adjusted Life Years (DALYS), may have their uses as a tool for identifying those most at risk of suffering damaging levels of material and physical deprivation, nevertheless, all too often these lead to populations being treated in purely instrumental terms as no more than a technical problem to be addressed in terms of efciency and cost. At no point do such measurements convey the distress of poverty and social degradation in lived experience (Kleinman and Kleinman 1997). Similarly, Pierre Bourdieu (1999b) argues that rational vocabularies of social science frequently amount to a form of symbolic violence when used to account for the many sufferings experienced in everyday life. A major concern here is that the genuine voice of suffering people is effectively silenced by the translation of their experience into the language of science and technical expertise. Through this process, politicians and policy makers nd it easier to turn away from what suffering does to a persons humanity (Das 1997b). Indeed, following Alvin Gouldner, it is argued that, by adopting a morally dispassionate and cold-calculating style of writing, social researchers may even nd themselves unwittingly allied to the interests of those whose positions of power and privilege are maintained at the cost of doing violence to large numbers of people (Gouldner 1968). On this understanding, by engaging with the topic of social suffering, risk research (particularly in the domains of health care) is bound to fall into debate over the question: when does the language of risk serve to conceal more than it explains about the painful social realities of human experience?

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In face of this dilemma, it may be worth reecting upon Hannah Arendts struggle to nd a style of writing to debate the peculiar character of the evil of totalitarianism. In some passages of her writing she openly complains about the ways in which the efcient language of technical experts serves to cover up and explain away human suffering to the point where it is regarded as no more than a meaningless triviality (Arendt 1968: 7 8). However, on other occasions, we nd her complaining about the ways in which more poetic and mythological genres of writing might also work to this effect (Arendt and Jaspers 1992: 69). In particular, she appears to be wary of the extent to which works of lamentation, by encouraging readers to re-experience suffering via personal feelings of anguish and remorse, enable a salving of conscience to take place whereby the original social meaning of catastrophic events is lost (Arendt 1968: 27 31). When confronted with these possibilities, Arendt maintains that our task should be to develop a style of writing that solves no problems and assuages no suffering so as to keep events such as the Holocaust alive in historical memory; for she holds to the view that, it is only insofar as we remain painfully perplexed by the difculty of understanding how our world could be made so inhuman that we might be drawn to engage with the political project of building more humane forms of society (Arendt 1994). This is not the point at which to embark upon a elaborated analysis of Arendts peculiar method of writing, or bring judgement to the many interpretations of work; I can only go so far as to sketch out some of the analytical parameters for debate that feature in the articles that follow. My intention here is to provide readers with questions for thinking about (and beyond) the topics of concern raised by this special edition of Health, Risk and Society. This has been devised more for the purpose of initiating inquiries into the possible conjunctions and disjunctions between research on health risk and the phenomenon of social suffering than for the advancement of any denitive points of view. The contributors were asked to critically appraise the conceptual and analytical merits of the risk paradigm in light of recent developments in research and writing on social suffering. In returning to reect further upon her interviews with women who have a family history of ovarian cancer, Nina Hallowell enters into debate with the problem of authenticity in articulating suffering. Here we are presented with a strong example of the potential for engagements with social suffering to heighten the self-critical reexivity of a researcher to a point where they are troubled to question the moral value of the research process and its contribution to the social recognition of the pain of others. This theme also features in the work of Marja-Liisa Honkasalo, albeit with a much stronger endorsement of the value of research on social suffering for advancing our understanding of health risk in lived experience. Honkasalo is inclined to identify the discourse of health risk with a limited conception of human agency and social experience that not only obscures the ways in which a population responds to health promotion campaigns, but also lends itself to a highly restricted account of suicide in terms of psychiatric morbidity. In both cases she maintains that, with a focus on social suffering, we might better appreciate the variety of cultural meanings that people acquire and create for critical events in their lives and, further, the signicance these hold for their social and existential well-being. In Andy Alaszewskis exploration of the ways in which personal diaries can be interpreted as narratives of risk, we are provided with a valuable addition to methodological debates in the eld. Once again, Alaszewskis terms of debate draw upon the claim that many of ways in which individuals deal with their everyday experiences of pain and suffering tend to be airbrushed from the ofcial record of health risk. In this context, he outlines an analytical framework for the incorporation of diaries within research and therapeutic processes by examining stroke survivors diary accounts of the ways in which they look back upon their illness experiences

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and face up to an uncertain future. Finally, one might approach the contributions of Gillian Bendelow and David Wainwright as an invitation to debate the signicance of research and writing on social suffering for the development of medical practice, particularly in so far as this relates to the diagnosis and treatment of bodily pain. While elaborating upon some of the arguments presented in earlier works that criticize biomedicine for its narrowly positivistic and excessively Cartesian account of bodily pain, Bendelow provides us with a wholly positive account of the value of research on social suffering for advancing a more holistic conception of the pain experience that has the potential to greatly augment the practice of patient care. By contrast, Wainwright argues that, under the effort to build a greater acknowledgement of the cultural and social components of the pain experience within their practice, doctors risk conating physiological and social/psychology problems to a point where scientic terms of medical diagnosis are rendered socially illegitimate and culturally devalued. Accordingly, in these two papers, each author works to oppose the arguments presented by the other. I leave it for readers to judge the relative merits of each case.

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