Academic journal article Health Sociology Review

How to Live with a Taboo Instead of 'Breaking It'. Alternative Empowerment Strategies of People with Incontinence

Academic journal article Health Sociology Review

How to Live with a Taboo Instead of 'Breaking It'. Alternative Empowerment Strategies of People with Incontinence

Article excerpt


The taboo surrounding impairments encompassing the umbrella term 'incontinence' is powerful. The topic is seldom addressed in mass media, revealed to friends or even discussed with care professionals. Worldwide, only 50% of people with urinary and/or faecal incontinence seek professional help (Norton, 2004; Shaw, 2001). In the field of disability studies such a taboo is generally considered a social barrier that disables a person and rather than attempting to hide or repair the impaired body itself energy should, in this perspective, be directed at diminishing such a barrier. The taboo should be challenged.

Scholars in disability studies oppose the medical model and argue that disability does not originate in an individual dysfunctional body, but in the ill-adapted social and material situations surrounding it. According to this social model, disability and deviance are not a bio-medical but a social, cultural, and political phenomenon (Albrecht, Seelman, and Bury, 2001; Davis, 1997; Shakespeare, 2001). Improving the situation of people with impairments then is not to be achieved by 'repairing' the body or making it look 'as normal as possible'. Improvement will be achieved by organising an emancipating, collective voice that confronts existing social and material barriers. Such an approach challenges taboos and strives for normalisation (Hughes, 2009).

There is one important disadvantage to this social model. Foremost, it is a generalising strategy. Striving for autonomy and having a voice might work for some situations and for some impairments, but not for all (see also Hendriks, 1998; Pols, 2005). As such, the strategy ignores the specificities of impaired or diseased bodies. Moreover, the political potential of people's unique, embodied knowledge is not recognised or explored in the social model (Pols, 2010a).

In response to this reductionism that downplays the impaired or diseased body, a number of scholars now contend that everyday embodied experiences should be more involved in the academic and political ambitions of disability studies (Gill, 2001; Hughes & Paterson, 1997; Zitzelsberger, 2005). Alternative approaches can be found in the practice-oriented work of Pols and Winance. Their research demonstrates that distributing and sharing specific embodied knowledge on how to live with a disease or impairment can induce significant potential for empowerment (i.e., COPD (Chronic Obstructive Pulmonary Disease) patients) (Pols, 2010a, 2010b; Winance, 2007).

In accordance with the practice-oriented studies, we focus on what people with incontinence do in daily life. We unravel their tacit skills and knowledge of living with a condition that is mostly hidden from view. We study how empowerment emerges in everyday situations. In this way, we examine whether empowerment for this group should be sought solely in an overwhelming task of 'breaking the taboo' or in having multiple and heterogeneous methods of dealing with the taboo.

Methodology and approach

This article is based on the life stories of nine persons with urinary incontinence in the Netherlands. Three of them also dealt with faecal incontinence. The group consisted of both women (3) and men (6) between the ages of 24 and 65 years old. With the exception of one participant, all respondents resided at home. For some of them, incontinence was only one part of a larger complex of impairments; for example, as a result of prostate cancer or spinal cord injury. For others, incontinence was their main impairment.

Most qualitative research regarding the topic of incontinence is limited to the experiences of older people who tend to consider incontinence to be a 'normal' part of their lives (Bradway & Barg, 2006; Garcia, Crocker & Wyman, 2005; Mitteness & Barker, 1995; Ostaszkiewitcz, O'Conell & Dunning, 2011). Relatively few of the elderly seek assistance from professionals. Incontinence is considered problematic but not a medical issue. …

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