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Contesting Illness

Contesting Illness: Process and Practices

Copyright Date: 2008
Pages: 368
  • Book Info
    Contesting Illness
    Book Description:

    The relationship between power and illness is the subject of limited discussion despite it being one of the most important issues in health-related policies and services. In an effort to correct this,Contesting Illnessengages critically with processes through which the meanings and effects of illness shape and are shaped by specific sets of practices. Featuring original contributions by researchers working in a number of disciplines, this collection examines intersections of power, contestation, and illness with the aid of various critical theoretical frameworks and methodological approaches.

    The contributors explore experiences of illness, diagnosis, and treatment, and analyse wider discursive and policy contexts within which people become ill and engage with health care systems. Though each essay is unique in its approach, they are linked together by a shared focus on contestation as a conceptual tool in considering the relationship between power and illness. Rather than focus on a single example, the contributors address different contested illnesses (chronic fatigue syndrome and environmental illness, for instance) as well as the contested dimensions of illnesses that are accepted as legitimate such as cancer and autism. Contesting Illness offers valuable insights into the assumptions, practices, and interactions that shape illness in the twenty-first century.

    ContributorsJan AngusPia H. BülowPeter ConradJoyce DavidsonHelen GremillionMaren KlawiterJoshua KelleySteve Kroll-SmithKatherine LippelPamela MossMichael OrsiniMichael J. PrinceAnnie PottsMary Ellen PurkisSharon Dale StoneCheryl StultsKatherine TeghtsoonianJane M. UssherCatherine van Mossel

    eISBN: 978-1-4426-8773-8
    Subjects: Health Sciences

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-x)
  4. Contributors
    (pp. xi-2)
  5. 1 Power and Illness: Authority, Bodies, and Context
    (pp. 3-27)

    As the twenty-first century unfolds, we are witnessing important changes in, and vigorous debates about, the ways in which people in the industrialized West understand and experience illness. These changes include a significant increase in the number of people diagnosed with chronic illness (see World Health Organization, 2005), the development of policies promoting fuller patient participation in the management of their own health (Badcott, 2005; Wilson, 2001), widespread support for treatment protocols that depart from conventional norms (e.g., alternative and complementary medicine; see Chaffin, Thoennes, Boucher, & Pronk, 2003; Ng, Wong, Hong, Koh, & Goh, 2003; Snow, Hovanec, & Brandt,...

  6. 2 Claiming a Disability Benefit as Contesting Social Citizenship
    (pp. 28-46)

    In her book,Illness as Metaphor, Susan Sontag (1978: 3) calls illness ‘the night-side of life, a more onerous citizenship.’ Continuing the imagery, she adds: ‘Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place’ (ibid.). This figure of speech resonates with prevailing beliefs regarding chronic illnesses and a great many experiences in accessing disability benefits (Prince, 2001...

  7. 3 Workers’ Compensation and Controversial Illnesses
    (pp. 47-68)

    Workers in Quebec have the right to compensation if they become incapable of working because of illness attributable to a work ‘accident’ or considered to be an ‘occupational disease.’ When the etiology of disease is controversial, as in the case of many musculo-skeletal disorders (MSDs), or when the existence of a disease is questioned by the medical establishment, as in the case of Chronic Fatigue Syndrome (CFS), Fibromyalgia, Sick Building Syndrome (SBS), and Multiple Chemical Sensitivity Syndrome (MCSS), it becomes difficult to access economic support from workers’ compensation systems in the event of disability. In this chapter, I examine the...

  8. 4 Managing Workplace Depression: Contesting the Contours of Emerging Policy in the Workplace
    (pp. 69-89)

    It is difficult not to notice the heightened profile that has been achieved in the Canadian context by the issue of ‘mental illness in the workplace,’ reflected as it has been in government discourse, reviews of relevant research literatures, and discussions within the business community (B.C. Business and Economic Roundtable on Mental Health, 2006; Bilsker, Gilbert, Myette, & Stewart-Patterson, 2004; Global Business and Economic Roundtable on Addiction and Mental Health [hereafter Global Roundtable], 2006;HealthCarePapers, 2004; Ministry of Health Services, 2002 and 2003; Senate Standing Committee, 2004a and 2004b). Almost invariably across these contexts, mental distress among employees has been...

  9. 5 Contesting Coronary Candidacy: Reframing Risk Modification in Coronary Heart Disease
    (pp. 90-106)

    Risk discourse, as a central component of health promotion, emphasizes the alignment of factors that may contribute to a range of potential negative outcomes for individuals or populations (Lupton, 1999; Petersen & Lupton, 1996). The emphasis on risk obviates the requirement for demonstrable signs or symptoms of disease and creates the possibility of a newly medicalized subjectivity: that of the person who is ‘at risk’ for disease or its recurrence (Petersen & Lupton, 1996). The ‘at risk’ body is the locus of personal and professional surveillance and is the site where people practise elaborate repertoires of risk-modification activities. Neoliberal rationalities...

  10. 6 Hepatitis C and the Dawn of Biological Citizenship: Unravelling the Policy Implications
    (pp. 107-122)

    Adriana Petryna describes biological citizenship as ‘a massive demand for but selective access to a form of social welfare based on medical, scientific and legal criteria that both acknowledge biological injury and compensate for it’ (2002: 6). As she explains in her examination of the aftermath of the Chernobyl disaster two decades ago, ‘The damaged biology of a population has become the grounds for social membership and the basis for staking citizenship claims’ (ibid.: 5). In this chapter, I discuss the implications of a shift to new forms of ‘biological citizenship’ for how we understand health policy and politics, using...

  11. 7 Tracing Contours of Contestation in Narratives about Chronic Fatigue Syndrome
    (pp. 123-141)

    Throughout the past four decades, social scientists have been studying how chronic illness affects people’s sense of self. The British sociologist Michael Bury (1982) described chronic illness as adisruption of biography, and this has become a model for conceiving crucial life events as markers dividing life history in terms of before and after.¹ This image of disruption involves the need for reconstruction. Similarly, Kathy Charmaz (1983 and 1987) writes aboutloss of selfas a social consequence of chronic illness – an experience that leads to the struggle for a (new) self.

    Other research about the self and illness includes...

  12. 8 Cancer as a Contested Illness: Seeking Help amid Treatment
    (pp. 142-157)

    Cancer is a dreaded disease. The ready availability of professionals and treatments designed tofight cancer¹ support its categorization as a ‘legitimate’ illness. So what could there be to contest about cancer?

    Curious about the relationship between diagnosis and treatment for cancer and processes of identity formation, we undertook a field study of people’s experiences in a cancer clinic. Although the professional literature often draws on narrative accounts to underscore how devastating a cancer diagnosis is (e.g., Bailey et al., 2005; Bradley, 2005; Mathieson & Stam, 1995), our study revealed the extensive and convoluted nature of the work people engage...

  13. 9 Edging Embodiment and Embodying Categories: Reading Bodies Marked with Myalgic Encephalomyelitis as a Contested Illness
    (pp. 158-180)

    Arguably the most compelling mechanism for defining ill bodies within biomedical practice is diagnosis. Despite attempts to put into place practices that are reproducible over time and across space by professionals working within a biomedicine paradigm, the practice of diagnosis is greatly influenced – to the extent of being constituted – by the social relations embedded within the relationships of those engaging with medicalized knowledge. The people and practices comprising sites of health care provision, health and medical financing, workplaces, and home environments use various and multiple discourses to make sense of medicalized knowledge, expressed in a diagnosis, to describe an ill...

  14. 10 Managing the Monstrous Feminine: The Role of Premenstrual Syndrome in the Subjectification of Women
    (pp. 181-200)

    Throughout history, and across cultures, the reproductive body of woman has provoked fascination and fear. It is a body deemed dangerous and defiled, the myth of the monstrous feminine made flesh, yet also a body that provokes adoration and desire, and enthralment with the mysteries within. We see this ambivalent relationship played out in mythological, literary, and artistic representations of the feminine, where woman is positioned as powerful, impure, and corrupt, a source of moral and physical contamination; or as sacred, asexual, and nourishing, a phantasmic signifier of threat extinguished. Evidence of this dread is present in representations of the...

  15. 11 Resisting an Illness Label: Disability, Impairment, and Illness
    (pp. 201-217)

    Particularly in academic texts devoted to explaining the scope of the sociology of health and illness, the termsillness and disabilityare often used in the same breath (e.g., Freund, McGuire, & Podhurst, 2003; Weitz, 2004). Even though such texts usually point out that the two terms are not coterminous and that there are different issues involved in understanding the experience of illness and the experience of disability, the very fact that the terms are discussed together creates the impression that disability is a particular kind of illness.¹ This is not to say that the conflation of disability and illness...

  16. 12 The Race and Class Politics of Anorexia Nervosa: Unravelling White, Middle-Class Standards in Representations of Eating Problems
    (pp. 218-238)

    Until quite late into the twentieth century, anorexia nervosa (hereafter referred to as anorexia) had been described almost exclusively as a white, middle-class phenomenon. Consider the following popular 1978 book titles, written at a time when the incidence of anorexia was increasing so dramatically that it was no longer considered an obscure illness (indeed, it was soon to obtain what some would call a ‘quasiepidemic’ status): pioneer therapist Hilde Bruch (1978) wroteThe Golden Cage; and prominent therapist Steven Levenkron (1978) pennedThe Best Little Girl in the World. These titles conjure up familiar stereotypes of young women and girls...

  17. 13 ‘More Labels Than a Jam Jar’: The Gendered Dynamics of Diagnosis for Girls and Women with Autism
    (pp. 239-258)

    Sharon wrote this excerpt in a letter to autism specialist, Peter Szatmari, who has since authored a popular text (2004) for those who care for and work with children with Autistic Spectrum Disorders (ASDs). Szatmari reproduces Sharon’s letter in this text, wherein she articulates her reasons for writing in a way that is clear, insightful, and moving. The clinician includes a lengthy description of his subsequent meetings with Sharon, and his interpretations of her stories of a life lived on the autistic spectrum.

    The unusually ‘fuzzy’ characteristics of autism (Hodge, 2005; Wing, 1997) are increasingly familiar to a lay population,...

  18. 14 The Female Sexual Dysfunction Debate: Different ‘Problems,’ New Drugs – More Pressures?
    (pp. 259-280)

    Women’s sexuality in Western culture has historically been constructed as problematic (Tuana, 1993), and women’s bodies continue to be ‘a site of struggle for definition and control’ (Braun & Wilkinson, 2001: 17). The contemporary debate around women’s sexual problems – their causes and remedies – centres on the increasing influence of the biomedical model of sexuality and provides the latest example of such a struggle for meaning and control. In this chapter, I examine the key contributors to and perspectives in the Female Sexual Dysfunction (FSD) debate: those who endorse biophysiological explanations for sexual difficulties and promote the use of new sexuopharmaceuticals...

  19. 15 Moving from Settled to Contested: Transformations in the Anatomo-Politics of Breast Cancer, 1970–1990
    (pp. 281-303)

    In the late 1980s and early 1990s, new forms of cancer organizing and activism mushroomed across the United States. Over the course of the next few years, a politically powerful, patient-led social movement emerged that challenged and changed many of the practices through which breast cancer had been discursively represented, scientifically investigated, medically managed, and publicly administered. Breast cancer thus joined a growing number of health conditions politicized by those who directly suffer from them. Unlike many contested illnesses, however, whose sufferers struggle for medical legitimacy and recognition, breast cancer was a ‘routinely diagnosed condition’ (Brown, 1995) long before it...

  20. 16 Environments, Bodies, and the Cultural Imaginary: Imagining Ecological Impairment
    (pp. 304-322)

    This chapter is written as a gloss, an all-too-brief tour of several complex and nuanced topics held together by a thin thread that we are calling thecultural imaginary. Imagining, to paraphrase Wittgenstein, is an act of human creation (1967: 7 and 23). It is a mindful form of life rooted in language and, more deeply, in a cultural fabric of the actual and the possible. The cultural imaginary expresses itself in characterizations, figures, perceptions, and reflections; in mental images of ourselves, others, and the social and biophysical worlds that we inhabit. Our interest is in how, over time, popular...

  21. 17 Contestation and Medicalization
    (pp. 323-336)

    Contestation of illness can have numerous meanings. In social science it is most frequently considered as contested illness, with patients and advocates challenging medical perspectives. But contestation is perceptible in a number of ways with illness, including negotiation between physicians and patients over diagnosis or treatment, patients attempting to bring conditions or etiologies to medical notice, challenges over the meaning of illness, and even as the utilization of alternative medicine. Rarely do we see various representations of contestation collected in a single volume (for an exception, see Kroll-Smith, Brown, & Gunter, 2000).

    In this final and reflective chapter of this...

  22. Index
    (pp. 337-347)