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

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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.

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