‘We are the canary in a coal mine’: Establishing a disease category and a new health risk

Abstract

This paper analyses the process of establishing a risk object – electromagnetic fields. This example will be used to examine risk categorisation as such, and to explore how individual and collective attempts to establish a new risk interact with health policy. We studied people who claim to suffer from electro-hypersensitivity. We conducted participant observation and repeated interviews with 18 electro-hypersensitivity sufferers, and interviewed representatives of ‘patient’ organisations and health policy-makers in the Netherlands. In their attempts to trace particular outcomes (electro-hypersensitivity) to a specific risk factor (electromagnetic fields), we observed electro-hypersensitivity sufferers assembling complaints and complainants into a single illness category, distinguishing ‘real’ from ‘fake’ cases, and turning to measurement and experiments in order to show that others are at risk. Although electro-hypersensitivity sufferers mimic scientific practices, they have thus far failed to have their illness recognised. To non-sufferers, electro-hypersensitivity remains a psychosomatic condition. This position entails a dual failure for electro-hypersensitivity sufferers – they suffer from medically unexplained symptoms while identifying with a politically and medically unrecognised label. This very failure, however, provides perceived legitimacy for political activism. Although those who categorise themselves as having electro-hypersensitivity have failed to establish electromagnetic fields as a risk, their suffering is increasingly recognised. This partial recognition, we argue, is an attempt to depoliticise the issue.

Keywords:

• categorisation
• risk
• health
• medically unexplained symptoms
• electromagnetic fields

Acknowledgements

We would like to thank all of our respondents, without whose willingness to share their experiences this research would not have been possible. We are grateful for the comments made by Monica Greco, Bob Heyman and Annemarie Mol on earlier drafts. Takeo David Hymans edited and fine-tuned the final version of the article.

Notes

1. See http://www.gezondheidsraad.nl/en (Accessed 12 January 2012).

2. Quotes translated from Dutch by the first author.

3. In the Dutch language, the first relevant hit on Google with the term ‘UMTS' (Universal Mobile Telecommunications Systems, the common standard for the third generation of mobile phone technology) is StopUMTS! (www.stopumts.nl). One participant referred to this up-to-date database on electromagnetic fields and health information and protest as his ‘Bible'. Most view it as the most important Dutch source of information.

4. See http://www.baubiologie.de/site/english/about.php (Accessed 11 January 2012).

5. The standards applied by these specialists are the German Building Biology standards (SBM2008), which are well below the limits set by the Dutch Health Council and the International Commission on Non-Ionizing Radiation Protection. See http://www.verband-baubiologie.de/pdf/RICHTWERTE-2008-ENGLISCH.PDF (Accessed 16 November 2011).

6. See www.kennisplatform.nl (Accessed 12 January 2012).