‘We are the canary in a coal mine’ Establishing a disease category and a new health risk
M.B. de Graaffa* and C. Bröerb
aAmsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, The Netherlands; bDepartment of Sociology, University of Amsterdam, Amsterdam, The Netherlands
Health, Risk & Society, 14(2), 129-147, DOI: 10.1080/13698575.2012.661040
This paper analyses the process of establishing a risk object – electromagnetic fields (EMF). This example will be used to examine risk categorization as such, and to explore individual and collective attempts to establish a new risk interact with health policy. We studied people who claim to suffer from electro-hypersensitivity (EHS). We conducted participant observation and repeated interviews with 18 EHS sufferers, and interviewed representatives of ‘patient’ organizations and health policy-makers in the Netherlands. In their attempts to trace particular outcomes (EHS) to a specific risk factor (EMF), we observed EHS 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 EHS sufferers mimic scientific practices, they have thus far failed to have their illness recognized. To non-sufferers, EHS remains a psychosomatic condition. This position entails a dual failure for EHS sufferers – they suffer from medically unexplained symptoms while identifying with a politically and medically unrecognized label. This very failure, however, provides perceived legitimacy for political activism. Although those who categorize themselves as having EHS have failed to establish EMF as a risk, their suffering is increasingly recognized. This partial recognition, we argue, is an attempt to depoliticize the issue.
Keywords: Categorization, risk, health, medically unexplained symptoms, electromagnetic fields
*Corresponding author: firstname.lastname@example.org