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.

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