Praticidades de tirar o fôlego

Uma política de posições do paciente corporificadas

Autores

  • Jeannette Pols University of Amsterdam

DOI:

https://doi.org/10.48006/2358-0097/V9N1.E9108

Palavras-chave:

corpo, teoria social, doença/enfermidade, etnografia, política

Resumo

Ao declarar a Biomedicina como o seu contradiscurso apolítico, as teorias sociais, incluindo os estudos da deficiência, encontram problemas ao discutir os corpos e os seus padecimentos. Este artigo explora as possibilidades de “trazer os corpos de volta” de formas politicamente relevantes, ao mesmo tempo que evita reduzi-los a “dados” singulares e naturais. Isto é feito explorando algumas das práticas em que pessoas com Doença Pulmonar Obstrutiva Crônica (DPOC) tentam viver com a sua doença crônica e em conjunto com outras. Torna-se claro que o que elas experienciam como problemas físicos e sociais importantes são a invisibilidade da sua doença, combinada com a visibilidade dos recursos utilizados para lidar com os seus problemas. Esta combinação leva a comportamentos incompreensíveis para os outros. Demonstra-se que alguma forma de presença da doença é necessária para criar posições sociais que permitam aos doentes viver com os outros de uma forma aceitável. O artigo prossegue explorando formas em que os corpos são tornados presentes de modo proveitoso. Estas encontram-se onde as pessoas com DPOC: (1) criam comunidades de corpos partilhados que permitem uma multiplicidade de presenças visíveis e invisíveis de DPOC; (2) desenvolvem formas de educar os seus corpos de diferentes maneiras para criar novas presenças; (3) utilizam os seus corpos como fontes de conhecimento sobre viver com falta de ar; e (4) criam corpos transportáveis para levar presenças de DPOC para outros lugares, utilizando o argumento da “demonstração por números”, do passar do tempo e do descarte das características excepcionais dos seus corpos e de suas situações. O artigo conclui com uma discussão sobre as possibilidades relativamente inexploradas de criar e partilhar “conhecimentos do paciente” e sobre as áreas que isto abre para uma nova política de inclusão social.

Biografia do Autor

Jeannette Pols, University of Amsterdam

University of Amsterdam

Referências

BARBOT, J. 2006. “How to build an ‘active’ patient”. Social Science and Medicine, 3, p. 538-51. DOI: https://doi.org/10.1016/j.socscimed.2005.06.025

BARBOT, J; DODIER, N. 2002. “Multiplicity in scientific medicine: The experience of HIV- positive patients”. Science, Technology and Human Values, 27, p.404-40. DOI: https://doi.org/10.1177/016224390202700304

BARNES, C; MERCER, G; SHAKESPEARE, T. 1999. Exploring disability. Cambridge: Polity Press.

BOEVINK, W. 2006a. Stories of recovery. Working together towards experiential knowledge in mental health care. Utrecht, The Netherlands: Trimbos-instituut.

BOEVINK, W. 2006b. From being a disorder to dealing with life. Schizophrenia Bulletin, 1(2), p. 17-19. DOI: https://doi.org/10.1093/schbul/sbi068

DAVIS, L.J. 1997. The disability studies reader. New York: Routledge.

DEPARTMENT OF HEALTH. 2001. The expert patient: A new approach to chronic disease management for the 21st century. London: Department of Health.

DIXON, L; HACKMAN, A; LEHMAN, A. 1997. “Consumers as staff in assertive community treatment program”. Administration and Policy in Mental Health, 25, p.199-208. DOI: https://doi.org/10.1023/A:1022243106341

EDGAR, A. 2005. “The expert patient. Illness as practice”. Medicine. Health Care and Philosophy, 8, 165-171. DOI: https://doi.org/10.1007/s11019-005-2277-5

ELIAS, N. 1976. Über den Prozess der Zivilisation. Soziogenetische und psychogenetische Untersuchungen. Baden-Baden, Germany: Suhrkamp Taschenbuch Verlag.

EPSTEIN, S. 2008. “Patient groups and health movements”. In: HACKET, E.J; AMSTERDAMSKA, O; LYNCH, M; WAJCMAN, J (eds) The handbook of science and technology studies, p.499-539. Cambridge, MA: MIT Press.

GOFFMAN, E. 1968. Stigma. Harmondsworth, UK: Pelican.

GREENHALGH, T. 2009. “Patient and public involvement in chronic illness: Beyond the expert patient”. British Medical Journal, 338, b.49. DOI: https://doi.org/10.1136/bmj.b49

HABRAKEN, J.M; POLS, J; BINDELS, P.J.E; WILLEMS, D.L. 2008. “The silence of patients with end-stage COPD: A qualitative study”. British Journal of General Practice, 58, p. 844-849. DOI: https://doi.org/10.3399/bjgp08X376186

HENDRIKS, R. 1998. “Egg timers, human values and the care of autistic youths”. Science, Technology and Human Values, 23(4), p.399-424. DOI: https://doi.org/10.1177/016224399802300403

HUGHES, B. 2009. “Wounded/monstrous/abject: A critique of the disabled body in the sociological imaginary”. Disability and Society, 24(4), p.399-410. DOI: https://doi.org/10.1080/09687590902876144

HUGHES, B; PATERSON, K. 1997. “The social model of disability and the disappearing body. Towards a sociology op impairment”. Disability and Society, 12(3), p 325-340. DOI: https://doi.org/10.1080/09687599727209

LAW, J. 2002. Aircraft stories. De-centering the object in techno-science. Durham, NC: Duke University Press.

MEAD, S; HILTON, D; CURTIS, L. 2001. “Peer support: A theoretical perspective”. Psychiatric Rehabilitation Journal, 25(2): 134-141. DOI: https://doi.org/10.1037/h0095032

MOL, A. 1998. “Missing links, making links. The performance of some atheroscleroses”. In: BERG, M and MOL, A (eds) Differences in medicine, p. 144-165. Durham, London: Duke University Press. DOI: https://doi.org/10.2307/j.ctv1220pvr.11

MOL, A. 2002. The body multiple. An ontology of medical practice. Durham, NC: Duke University Press. DOI: https://doi.org/10.1215/9780822384151

MOL, A. 2008. The logic of care. London: Routledge DOI: https://doi.org/10.4324/9780203927076

MOL, A; LAW, J. 2004. “Embodied action, enacted bodies. The example hypoglycaemia”. Body and Society, 10, p.43-62. DOI: https://doi.org/10.1177/1357034X04042932

MOL, A; POLS, J. 1996. “Ziekte leven: Bouwstenen voor een medische sociologie zonder disease/illness-onderscheid [Living disease: Building blocks for a medical sociology without the illness/disease distinction]”. Kennis en methode. Tijdschrift voor wetenschapsfilosofie en wetenschapsonderzock, 20(4), p.347-361.

MOSER, I. 2000. “Against normalisation: Subverting norms of ability and disability”. Science as Culture, 9, 201-240. DOI: https://doi.org/10.1080/713695234

MOSER, I. 2005. “On becoming disabled and articulating alternatives: The multiple modes of ordering disability and their interferences”. Cultural Studies, 19, p.667-700. DOI: https://doi.org/10.1080/09502380500365648

MOSER, I. 2006. “Disability and the promise of technology: Technology, subjectivity and embodiment within an order of the normal”. Information, Communication and Society, 9(3), p 373-395. DOI: https://doi.org/10.1080/13691180600751348

MOSER, I. 2009. “A body that matters? The role of embodiment in the recomposition of life after a road traffic accident”. Scandinavian Journal of Disability Research, 11(2), p.81-96. DOI: https://doi.org/10.1080/15017410902830520

MOSER, I; LAW, J. 1999. “Good passages, bad passages”. In: LAW, J and HASSARD, J (eds) Actor network theory and after, p.196-217. Oxford: Blackwell Publishers. DOI: https://doi.org/10.1111/j.1467-954X.1999.tb03489.x

MOWBRAY, C.T; MOXLEY, D; COLLINS, M.E. 1998. “Consumers as mental health providers: First person accounts of benefits and limitations”. Journal of Behavioral Health Services and Research, 25, p.397-411. DOI: https://doi.org/10.1007/BF02287510

OLIVER, M. 1996. Understanding disability: From theory to practice. Basingstoke, UK: Macmillan.

POLS, J. 2005. “Enacting appreciations: Beyond the patient perspective”. Health Care Analysis, 13(3), p.203-221. DOI: https://doi.org/10.1007/s10728-005-6448-6

POLS, J. 2006. “Washing the citizen: Washing, cleanliness and citizenship in mental health care”. Culture, Medicine and Psychiatry, 30(1), p.77-104. DOI: https://doi.org/10.1007/s11013-006-9009-z

POLS, J. 2008. “Which empirical research, whose ethics? Articulating ideals in long-term mental health care”. In: WIDDERSHOVEN, G; HOPE, T; SCHEER, VD; MCMILLAN, J Empirical ethics in psychiatry, p.51-68. Oxford: Oxford University Press. DOI: https://doi.org/10.1093/med/9780199297368.003.0005

POLS, J. 2009. “Burgerschap in relaties. Over zichtbaarheid, onzichtbaarheid en het belang van lotgenoten [Citizenship in relations. About visibility, invisibility and the importance of fellow patients]”. Maandblad Geestelijke volksgezondheid, 64(9), p.760-774..

POLS, J. 2010a. “Telecare: What patients care for”. In: MOL, A; MOSER, I; POLS, J (eds) Care in practice, p.171-193. Bielefeld, Germany: Transcript Verlag.

POLS, J. 2010b. “Wonderful webcams. About active gazes and invisible technologies”. Science Technology and Human Values. DOI: 10.1177/0162243910366134. DOI: https://doi.org/10.1177/0162243910366134

POLS, J. 2011. “Breathtaking practicalities: A politics of embodied patient positions”. Scandinavian Journal of Disability Research, v. 13, n. 3, p. 189-206. DOI: https://doi.org/10.1080/15017419.2010.490726

SHAKESPEARE, T. 2006. Disability rights and wrongs. London: Routledge. DOI: https://doi.org/10.4324/9780203640098

SHERLOCK, J. 1996. “Dance and the culture of the body. Where is the Grotesque?” Women’s Studies International Forum, 19(5), p. 525-533. DOI: https://doi.org/10.1016/0277-5395(96)00047-7

SORENSEN, E. 2009. The materiality of learning. Technology and knowledge in educational practice. Cambridge: Cambridge University Press.

STRUHKAMP, R; MOL, A; SWIERSTRA, T. 2009. “Dealing with in/dependence: Doctoring in physical rehabilitation practice”. Science, Technology and Human Values, 34, p. 55-76. DOI: https://doi.org/10.1177/0162243907312954

TAYLOR, S; SHOULTZ, B; WALKER, P. 2003. Disability studies: Information and resources. http://thechp.syr.edu/disability_studies_2003_current.html#Introduction

THOMSON, R.G. 1997. “Feminist theory, the body and the disabled figure”. In: DAVIS, J.L (eds) The disability studies reader, p.279-292. London: Routledge.

TRAPPENBURG, M. 2008. Genoeg is genoeg. Over gezondheidszorg en democratie [Enough is enough. About health care and democracy]. Amsterdam: AUP. DOI: https://doi.org/10.5117/9789053568194

VELPRY, L. 2008. “The patient’s view: Issues of theory and practice”. Culture, Medicine and Psychiatry, 32, p.238-258. DOI: https://doi.org/10.1007/s11013-008-9086-2

WINANCE, M. 2001. The`se et Prothe`se. Le processus d’habilitation comme fabrication de la personne. Paris: ENSMP, CSI.

WINANCE, M. 2007. “Being normally different? Changes to normalisation processes: From alignment to work on the norm”. Disability and Society, 22(6), p.625-638. DOI: https://doi.org/10.1080/09687590701560261

WORLD HEALTH ORGANIZATION. 1980. International classification of impairments, disabilities and handicaps. Geneva: WHO.

ZOLA, I.K. 1991. “Bringing our bodies and ourselves back in: Reflections on a past, present and future ‘medical sociology’”. Journal of Health and Social Behavior, 32, p.1-16. DOI: https://doi.org/10.2307/2136796

Downloads

Publicado

17.06.2024

Como Citar

Pols, J. (2024). Praticidades de tirar o fôlego: Uma política de posições do paciente corporificadas. Novos Debates, 9(1). https://doi.org/10.48006/2358-0097/V9N1.E9108

Edição

Seção

Traduções