Breathtaking practicalities: a politics of embodied patient positions

Abstract

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. These are found where the people with COPD: (1) create communities of shared bodies that allow for a multitude of visible and invisible presences of COPD; (2) develop ways to educate their bodies in different ways to create new presences; (3) use their bodies as sources of knowledge about living with breathlessness; and (4) create transportable bodies to take COPD presences elsewhere, by using the argument of ‘demonstration by numbers’, the workings of time and by playing out the exceptional characteristics of their bodies and situations. The paper concludes with a discussion of the relatively unexplored possibilities for creating and sharing ‘patient knowledge’ and the areas this opens up for a new politics of social inclusion.

Keywords:

• body
• social theory
• disease/illness
• ethnography
• politics

Acknowledgements

I want to thank the patients and professionals for their support for this research, and Dick Willems, Amade M'Charek and Ingunn Moser for comments on earlier drafts. I also thank Annemarie Mol for a long history of thinking about matters of disease and illness, Sabine Ootes and Evelien Tonkens for our work together on citizenship, the VSBfonds and the EU (EFORTT) for funding my research.

Notes

1. Using the concept of ‘subject position’ provides pointers to analyse how the subject is embodied within particular practices. This would not be possible with a concept of, say, ‘social role’. Furthermore, the concept makes space for empirically establishing the character of the agency of the subject in a particular situation. It situates this agency by linking it to particular arrangements and practices. Unlike a concept of the ‘patient perspective’ (see also Velpry 2008), it makes space for observing non-verbal activities, or ways in which particular positions are enacted or ‘done’, without those enacting it being explicitly aware of it (Mol 1998; Pols 2005).

2. See: Involve, as part of NICE in the UK; in France INSERM does the same thing; and in the Netherlands there is a participation programme by the major research funding agency, Zonmw, see http://www.zonmw.nl/nl/onderwerpen/alle-programma-s/patientenparticipatie in-onderzoek-kwaliteit-en-beleid/

3. In this paper I want to foreground bodies and illness, hence, I will boldly speak of ‘patients’.

4. http://www.rivm.nl/bibliotheek/digitaaldepot/FactsheetCOPD.pdf

5. Fellow patients rarely show up in texts about emancipation of patients; patients are supposed to be part of society and deal with ‘normal’ people rather than their fellows in fate. This has unintended discriminatory effects and makes the importance of fellow patients for social integration invisible. See Pols 2008.

6. See for the move towards daily life and the connection of this knowledge to clinical knowledge: Struhkamp, Mol, and Swierstra 2009; Osborne 1992; Mol and Pols 1996; Mol and Law 2004; Winance 2001, 2007; Moser 2005; Pols 2010a).