Breathtaking practicalities: a politics of embodied patient positions

By declaring biomedicine as its apolitical counter-discourse, social theory, including disability studies, experiences problems discussing bodies and their ailments. This paper explores possibilities to ‘bring bodies back in’ in politically relevant ways, while avoiding reducing bodies to singular, natural ‘givens’. This is done by exploring some of the practices in which people with severe Chronic Obstructive Pulmonary Disease (COPD) attempt to live with their chronic disease and together with others. It becomes clear that what they experience as important physico-social problems are the invisibility of their disease, combined with the visibility of the aids used to deal with its problems. This combination leads to behaviour that is incomprehensible to others. It is demonstrated that some form of presence of the disease is needed to create social positions that allow patients to live with others in an acceptable way. The paper continues by exploring ways in which bodies are made present in useful ways. T...

[1]  Ingunn Moser,et al.  AGAINST NORMALISATION: Subverting Norms of Ability and Disability , 2000 .

[2]  J. Pols.  WASHING THE CITIZEN: WASHING, CLEANLINESS AND CITIZENSHIP IN MENTAL HEALTH CARE , 2006, Culture, medicine and psychiatry.

[3]  A. Edgar,et al.  The expert patient: Illness as practice , 2005, Medicine, health care, and philosophy.

[4]  L. Velpry.  The Patient’s View: Issues of Theory and Practice , 2004, Culture, medicine and psychiatry.

[5]  B. Ford.  International Classification of Impairments, Disabilities and Handicaps , 1984, Releve epidemiologique hebdomadaire.

[6]  Annemarie Mol,et al.  Embodied Action, Enacted Bodies: the Example of Hypoglycaemia , 2004 .

[7]  Annemarie Mol.  Missing Links, Making Links: The Performance of Some Atheroscleroses , 2020, Differences in Medicine.

[8]  J. Sherlock.  Dance and the culture of the body: Where is the grotesque? , 1996 .

[9]  A. J. Pols.  Telecare; What patients care about , 2010 .

[10]  E. Srensen.  The Materiality of Learning: Technology and Knowledge in Educational Practice , 2009 .

[11]  K. Paterson,et al.  The social model of disability and the disappearing body , 1997 .

[12]  T. Greenhalgh.  Patient and public involvement in chronic illness: beyond the expert patient , 2009, BMJ : British Medical Journal.

[13]  Lennard J. Davis,et al.  The Disability Studies Reader , 2013 .

[14]  Steven Epstein,et al.  Patient Groups and Health Movements , 2008 .

[15]  H. Harbers,et al.  Book Review: Putting Science in Its Place: Geographies of Scientific Knowledge; The Body Multiple: Ontology in Medical Practice , 2005 .

[16]  Ingunn Moser,et al.  Disability and the promises of technology: Technology, subjectivity and embodiment within an order of the normal , 2006 .

[17]  J. Pols,et al.  The silence of patients with end-stage COPD: a qualitative study. , 2008, The British journal of general practice : the journal of the Royal College of General Practitioners.

[18]  Myriam Winance,et al.  Thèse et prothèse : le processus d'habilitation comme fabrication de la personne. L'Association Française contre les Myopathies face au handicap , 2001 .

[19]  Ingunn Moser.  ON BECOMING DISABLED AND ARTICULATING ALTERNATIVES , 2005 .

[20]  Jeannette Pols,et al.  Wonderful Webcams: About Active Gazes and Invisible Technologies , 2011 .

[21]  M. Trappenburg.  Genoeg is genoeg , 2008 .

[22]  M. Trappenburg.  Genoeg is genoeg : over gezondheidszorg en democratie , 2008 .

[23]  J. Pols.  Which empirical research, whose ethics? Articulating ideals in long-term mental health care , 2008 .

[24]  I. K. Zola.  Bringing our bodies and ourselves back in: reflections on a past, present, and future "medical sociology". , 1991, Journal of health and social behavior.

[25]  R. Menninger.  Administration and policy in mental health , 1993, Administration and Policy in Mental Health and Mental Health Services Research.

[26]  D. Hilton,et al.  Peer support: a theoretical perspective. , 2001, Psychiatric rehabilitation journal.

[27]  Nicolas Dodier,et al.  Multiplicity in Scientific Medicine: The Experience of HIV-Positive Patients , 2002 .

[28]  A. Mol.  The Body Multiple: Ontology in Medical Practice , 2003 .

[29]  John Law,et al.  Good Passages, Bad Passages , 1999 .

[30]  D. Moxley,et al.  Consumers as mental health providers: First-person accounts of benefits and limitations , 1998, The Journal of Behavioral Health Services & Research.

[31]  T. Shakespeare,et al.  Disability Rights and Wrongs , 2009 .

[32]  L. Dixon,et al.  Consumers as Staff in Assertive Community Treatment Programs , 1997, Administration and Policy in Mental Health and Mental Health Services Research.

[33]  R. Hendriks,et al.  Egg Timers, Human Values, and the Care of Autistic Youths , 1998 .

[34]  B. Ford.  International classification of impairments, disabilities and handicaps. , 1984, The Medical journal of Australia.

[35]  Michael Oliver,et al.  Understanding Disability: From Theory to Practice , 1995 .

[36]  Per Hetland,et al.  The Materiality of Learning , 2012 .

[37]  Janine Barbot,et al.  How to build an "active" patient? The work of AIDS associations in France. , 2006, Social science & medicine.

[38]  Norbert Elias,et al.  Über den Prozess der Zivilisation : soziogenetische und psychogenetische Untersuchungen , 1940 .

[39]  B. Hughes.  Wounded/monstrous/abject: a critique of the disabled body in the sociological imaginary , 2009 .

[40]  Ingunn Moser.  A body that matters? The role of embodiment in the recomposition of life after a road traffic accident , 2009 .

[41]  M. Winance.  Being normally different? Changes to normalization processes: from alignment to work on the norm , 2007 .

[42]  P. Wood,et al.  Appreciating the consequences of disease: the international classification of impairments, disabilities, and handicaps. , 1980, WHO chronicle.

[43]  J. Pols.  Enacting Appreciations: Beyond the Patient Perspective , 2005, Health Care Analysis.