How to live with a taboo instead of ‘breaking it’. Alternative empowerment strategies of people with incontinence

Abstract

Many people throughout the world live with incontinence; however, they infrequently make themselves heard. In the current discourse regarding patient empowerment, this poses a dilemma as empowerment is usually believed to emerge from an individual or collective voice. A common response is that the existing taboo needs to be confronted. However, the metabolic functions of the body are a private affair for most people and ‘coming out’ as being incontinent is not necessarily empowering. Hence, solely focusing on the breaking of taboos to improve empowerment will not suffice. On the basis of nine biographic interviews with Dutch people with incontinence, we examine alternative forms of empowerment in everyday practices. Three strategies are detected: creating predictability; learning how to hide incontinence products; and confronting the incontinent body in encounters with others. Above all, it appears that sharing experiential knowledge on all these matters with peers can lead to more promising forms of empowerment for this group of people than the more usual discourse on voice and taboo.

Keywords:

• sociology
• knowledge utilisation
• empowerment
• taboo
• practices

Acknowledgements

We would like to thank all interviewees for sharing their personal stories and experiences with us. We would like thank all members of the Inco-site for letting us read and use fragments of their conversations for this research. Without their involvement our research would not have been possible. We would also like to thank the reviewers, the members of the Philosophy of Care group at the Academic Medical Centre, Jeannette Pols and the site manager of the Inco-site for giving us feedback on an earlier version of the article. This article is the result of a research project financed by Disability Studies in The Netherlands (DSIN) and The Netherlands Organisation for Health Research and Development (ZonMw) [grant number 416020006].