Portal de Periódicos da CAPES

WORDLESS PAIN

2005; Routledge; Volume: 19; Issue: 6 Linguagem: Inglês

10.1080/09502380500365655

1466-4348

Rita Struhkamp,

Education, Leadership, and Health Research

Abstract Current health care discussions often deal with issues such as self-determination, consumer orientation, civil rights and choices for patients and people with disabilities. Other experiences of illness and disability, such as pain and suffering are often avoided in these discussions because these expressions seem to confirm the public prejudice of tragic victimhood of people with disabilities. Various scholars have sought to reintroduce the enactment of the sick and disabled body into the discourses around disability. This essay is a part of that endeavour. Drawing on ethnographic fieldwork from a centre for physical rehabilitation, this article questions the idea that suffering turns people into passive victims of their bodies. By articulating the ways in which participants deal with suffering during the day-to-day activities of rehabilitation practice, the paper seeks to demonstrate that people do not passively sink into their suffering, but actively deal with it in the multiple settings and conditions of their embodied living. Three different ways in which rehabilitation participants deal with suffering will be unravelled. First, suffering is translated in the sense that it is transformed and transferred. Second, people actively manage their situation and balance different kinds of misery. Finally, people create a space where suffering is allowed to exist. Keywords: sufferingactivitiesrehabilitation practicesdisability An earlier draft of this paper appeared in Dutch (Struhkamp et al. 2004 Struhkamp, Rita M., Mol, Annemarie and Swierstra, Tsjalling E. 2004. 'Laten is moeilijk om te doen: Lijden in de praktijk van het revalidatiecentrum'. Krisis: Tijdschrift voor empirische filosofie, 1: 23–37. [Google Scholar]). I warmly thank all the people in the rehabilitation centre who welcomed me to share in this rich and puzzling world that includes their powerlessness and their suffering. I am also very grateful to Hans Achterhuis, Petra Bruulsema, Ute Bültmann, Gerard Goudriaan, Petra Jorissen, Loes Kater, Marta Kirejczyk, Petran Kockelkoren, Carola Kruijswijk, Irma van Slooten, Dirk Stemerding, Lara Tauritz Bakker, the guest editors and reviewers of Cultural Studies, and the participants of the workshop 'Biopolitics' in November 2003 in Hannover, Germany, for their valuable suggestions on earlier drafts of this paper. I particularly wish to thank Annemarie Mol and Tsjalling Swierstra for their ongoing inspiration as well as for their active support in writing this paper. Notes 1. See, for some early examples, Becker (1963 Becker, Howard S. 1963. Outsiders: Studies in the Sociology of Deviance, New York: The Free Press. [Crossref] , [Google Scholar]) and Goffman (1963 Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs: Prentice Hall. [Google Scholar]). 2. See, for example, Davis (2001 Davis, Lennard J. 2001. "Identity Politics, Disability, and Culture". In Handbook of Disability Studies, Edited by: Gary, L. Albrecht, Seelman, Katherine D. and Bury, Michael. 535–545. Thousand Oaks: Sage Publications. [Crossref] , [Google Scholar]) and Oliver (1990 Oliver, Mike. 1990. The Politics of Disablement, London: Macmillan. [Crossref] , [Google Scholar]). 3. See also Illich (1975 Illich, Ivan D. 1975. Medical Nemesis: The Expropriation of Health, London: Calder and Boyars. [Google Scholar]). 4. Contrary to health care and disability studies discussions, there is an increasing representation of suffering in the popular media. See Luc Boltanski (1999 Boltanski, Luc. 1999. Distant Suffering: Morality, Media and Politics, Cambridge: Cambridge University Press. [Crossref] , [Google Scholar]) for an elaborate analysis of the relationships between suffering, media and politics. 5. Many scholars have signalled the difficulty to express and articulate pain or suffering. Elaine Scarry aptly wrote in her influential analysis of the political consequences of the inexpressibility of physical pain: 'Physical pain has no voice' (Scarry 1985 Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World, New York: Oxford University Press. [Google Scholar], p. 3). Various contributions to the special issue on 'Social Suffering' in Daedalus formulate questions of social suffering in relation to language (Kleinman et al. 1996 Kleinmann , Arthur , Das Veena , & Lock , Margeret (1996) 'Introduction to the Special Issue 'Social Suffering' , Daedalus , 125 , V–XX . [Google Scholar]). See also Virginia Woolf's impressive literary search for words to describe embodied experiences of illness: 'English, which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver of the headache' (Woolf 1967 Woolf , Virginia (1967) 'On Being Ill' . In Virginia Woolf (Ed.) , Collected Essays Vol. 4 . New York : Hartcourt . [Google Scholar], p. 194). 6. Richard Sennett elaborates on these fears, which he called the 'shame of dependence'. He notes that in western societies, people feel it is demeaning to publicly expose weakness, dependency and suffering. He demonstrates the liberal roots of this shame and develops a theory in which respect and inequality can go hand in hand (Sennett 2003 Sennett, Richard. 2003. Respect in a World of Inequality, New York: W.W. Norton. [Google Scholar]). 7. For an overview of studies that articulate experiences of disabled living, see Gill (2001 Gill, Carol J. 2001. "'Divided Understandings: The Social Experience of Disability'". In Handbook of Disability Studies, Edited by: Gary, L. Albrecht, Katherine, D. Seelman and Bury, Michael. 351–372. Thousand Oaks: Sage Publications. [Google Scholar]). 8. This question resonates with the quest for suffering in contemporary theology. Some theologians encourage the acceptance of human suffering in a mystic embrace of reality (Sölle 1984 Sölle, Dorothee. 1984. Suffering, Augsburg: Fortress Publishers. [Google Scholar]). They support the idea that suffering requires some form of active engagement. However, theologians often deal with suffering in general rather than with the lived experiences of real people, who engage with their suffering in concrete situations of day-to-day life. 9. This essay is based on ethnographic research in a Dutch rehabilitation centre. During several months in 2000 and 2001, I conducted participant observations on a ward for people with spinal cord injuries or extended multiple sclerosis (MS). I also held semi-structured interviews with health professionals and with disabled people, some of whom I later visited in their own home environment after they had moved to their home. All field notes and interviews have been translated from Dutch into English and all names are invented; in the usage of first or last names, I follow the conventions of the ward. 10. For a study on the enactment of a disease through multiple practices and activities that departs from practicalities, physicalities and materialities of events see (Mol 2002 Mol, Annemarie. 2002. The Body Multiple: Ontology in Medical Practice, Durham and London: Duke University Press. [Crossref] , [Google Scholar]). 11. For accounts of their own disabled embodiment, see for example, Murphy (1987 Murphy, Robert F. 1987. The Body Silent, New York: W.W. Norton. [Google Scholar]) or Toombs (1992 Toombs, S. Kay. 1992. The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient, Dordrecht: Kluwer. [Crossref] , [Google Scholar]). 12. The entanglement of multiple consequences of a condition demonstrates the difficulties of classification systems in medicine, psychiatry and rehabilitation, such as the International Classification of Functioning and Disability (ICF) by the World Health Organization (WHO 2001 World Health Organization (WHO). 2001. International Classification of Functioning, Disability and Health, Geneva: WHO. [Google Scholar]). For an exceptional analysis of classifications and their consequences in medical and other settings, see Bowker and Star (1999). A spinal cord injury may entail consequences that are often separated as 'physical', 'psychic' or 'social'. However, in the day-to-day living of a spinal cord injury, the complex interactions between these dimensions are most demanding. I attempt to demonstrate these complexities and crossovers rather than categorizing them. For other work that seeks to demonstrate complexities rather than categories see Law and Mol (2002a Law , John and Annemarie Mol (2002a) 'Complexities: An Introduction' . In their Complexities: Social Studies of Knowledge Practices . Duke University Press , Durham and London , 1 – 22 . [Google Scholar]). 13. Moving beyond the physical disease towards the functional consequences of a physical impairment is the basic philosophy of rehabilitation (Barnes & Ward 2000 Barnes, Michael P. and Ward, Anthony B. 2000. Textbook of Rehabilitation Medicine, Oxford: Oxford University Press. [Google Scholar]). Rehabilitation medicine formulates its overall aims primarily at the level of activities and participation, rather than at the level of body functions and structures. 14. Bruno Latour introduced the notion of translation in his studies on the production of scientific facts and technological artefacts (Latour 1987 Latour, Bruno. 1987. Science in Action: How to Follow Scientists and Engineers through Society, Cambridge: Harvard University Press. [Google Scholar], 1988 Latour, Bruno. 1988. The Pasteurization of France, Cambridge: Harvard University Press. [Google Scholar]). He develops the two different meanings of the word translation, which are also relevant for an understanding of suffering. Translation means transformation in a linguistic and transfer in a geographic sense. 15. A few decades ago, critics of medicine regarded medical technologies as the most important sources of human suffering, rather than as means to deal with such suffering (Illich 1975 Illich, Ivan D. 1975. Medical Nemesis: The Expropriation of Health, London: Calder and Boyars. [Google Scholar]). However, more recent approaches in the philosophy of technology assume that technology is part of our daily lives. The consequences of technology, or so these scholars argue, are to be assessed in the concrete situations of its use. For an overview, see Achterhuis (2001 Achterhuis , Hans J . (Ed.) (2001) American Philosophy of Technology: The Empirical Turn . Bloomington : Indiana University Press . [Google Scholar]). 16. Contrary to clinical rehabilitation, rehabilitation research does attempt to find interventions into the bodily impairment in spinal cord injury, such as research on nerve regrowth or electric nerve stimulation of paralysed muscles (Holsheimer 2001 Holsheimer, J. 2001. "'Technological Innovation in Spinal Cord Stimulation'". In Surgical Management of Pain, Edited by: Burchiel, K.J. 933–947. New York: Thieme Publishers. [Google Scholar], Kenney et al. 2001 Kenney , L. P. J. , Bultstra , G. , Buschman , R. , Taylor , P. , Mann , G. E. , Hermens , H. J. , Holsheimer , J. , Verloop , A. J. , Nene , A.V. , Aa , H. E. van der & Hobby , J. (2001) 'A Novel Two-channel Implanted Drop Foot Stimulator: Initial Clinical Results' , Conference Biomechanics Lower Limb in Health, Disease, and Rehabilitation . Salford , UK , 62 – 63 . [Google Scholar]). 17. Bruno Latour indicates that each translation is always a transformation: 'We cannot speak properly, moving from the same to the same, but only roughly, moving from the same to the other. […] If a message is transported, then it is transformed' (Latour 1988 Latour, Bruno. 1988. The Pasteurization of France, Cambridge: Harvard University Press. [Google Scholar], p. 181). 18. From its beginning, the disability movement has strongly emphasized the distinction between impairment and disability. While impairment is a biological condition, disability is a social construction, situated within the larger social, political and economic context, including our built environment. See for example Oliver (1990 Oliver, Mike. 1990. The Politics of Disablement, London: Macmillan. [Crossref] , [Google Scholar]) and Davis (1997). 19. Time has been analysed extensively in chronic disease and disability. For a classical sociological study of the ways in which time structures medical treatment and hospital routines, see the ethnography of tuberculosis treatment by Julius Roth (1963 Roth, Julius A. 1963. Timetables: Structuring the Passage of Time in Hospital Treatment and other Careers, Indianapolis: Bobbs-Merrill. [Google Scholar]). For the difficulty to structure rehabilitation treatment over different time frames, see Struhkamp (2004 Struhkamp, Rita M. 2004. 'Goals in Their Setting: A Normative Analysis of Goal Setting in Physical Rehabilitation'. Health Care Analysis, 12: 131–155. [Google Scholar]). 20. The instability of preferences in decision-making processes is problematic, particularly in ultimate decisions such as in euthanasia, which is legal in the Netherlands. The participants in euthanasia decisions also address this problem by taking time and consulting a second physician. See Robert Pool (2000 Pool, Robert. 2000. Negotiating a Good Death: Euthanasia in the Netherlands, New York: Haworth Press. [Google Scholar]) for a worthwhile and vivid ethnography of euthanasia in a Dutch hospital. 21. In their analysis of train accidents, John Law and Annemarie Mol emphasize that managers often deal with more than two interests (Law and Mol 2002b Law, John and Annemarie, Mol. 2002b. "'Local Entanglements or Utopian Moves: An Inquiry into Train Accidents'". In Utopia and Organization, Edited by: Parker, Martin. 82–105. Oxford: Blackwell Publishers. [Google Scholar]). Management-in-action goes beyond the classic management style of balancing good against bad. It can be better described as tinkering along with a series of different and often clashing forms of good and bad. 22. The difficulty of letting oneself go is also described by Emilie Gomart and Antoine Hennion in their excellent analysis of the 'active passions' music amateurs and drug users pass through (Gomart & Hennion 1999 Gomart, Emilie and Hennion, Antoine. 1999. "'A Sociology of Attachment: Music Amateurs, Drug Users'". In Actor Network Theory and After, Edited by: Law, John and Hassard, John. 220–247. Oxford: Blackwell Publishers. [Crossref] , [Google Scholar]). The authors seek to go beyond oppositions like agent/structure, subject/object, active/passive or free/determined by investigating the attachments from which subjects emerge. 23. See Murphy (1987 Murphy, Robert F. 1987. The Body Silent, New York: W.W. Norton. [Google Scholar]) for an account of his first session with the physical therapist that he describes as an exhausting, challenging and shocking experience of reaching his own limits. 24. In a nursing rehabilitation handbook, Mary Ann Solimine and Shirley Hoeman explore how nurses deal with suffering in clinical rehabilitation. They indicate that rehabilitation nurses try to listen carefully, reassure, or be sympathetic in situations of despair (Solimine & Hoeman 1996 Solimine, Mary Ann E. and Hoeman, Shirley P. 1996. "'Spirituality: A Rehabilitation Perspective'". In Rehabilitation Nursing: Process and Application, Edited by: Shirley, P. Hoeman. 628–643. St. Louis: Mosby. [Google Scholar]). 25. Asymmetry in patient-professional relationships has been a major concern in medical anthropology and medical sociology for several decades. One scholar who has analysed and criticized unequal power relations in medical practices is Arthur Kleinman (1981 Kleinmann, Arthur. 1981. Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry, Berkely: University of California Press. [Google Scholar]). More recently, the general criticism has been replaced by raising questions such as how these differences in the position of the carer and the person cared for take shape in concrete medical practices, when this difference becomes important, and what its consequences are and for whom. Some of these studies include Akrich and Pasveer (1996 Akrich, Madeleine and Pasveer, Bernike. 1996. Comment la Naissance Vients aux Femmes, Paris: Les Empecheurs du Penser en Rond. [Google Scholar]) Casper (1998 Casper, Monica J. 1998. The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery, New Brunswick: Rutgers University Press. [Google Scholar]), Cussins (1998 Cussins, Charis M. 1998. "'Ontological Choreography: Agency for Women Patients in an Infertility Clinic'". In Differences in Medicine: Unraveling Practices, Techniques, and Bodies, Edited by: Berg, Marc and Mol, Annemarie. 166–201. Durham: Duke University Press. [Google Scholar]) and Singleton (1996 Singleton, Vicky. 1996. 'Feminism, Sociology of Scientific Knowledge and Postmodernism: Politics, Theory, and Me'. Social Studies of Science, 26: 445–468. [Crossref], [Web of Science ®] , [Google Scholar]).