Cultural conformity and cannabis care in the wake of intractable pediatric epilepsy.

Abstract

Biomedicine controls seizures for many children with epilepsy - but not all. In such cases, parents struggle in the wake of various structural, cultural, and corporeal ruptures. Continued use of ineffective medications can lead, iatrogenically, to frightening and serious symptoms and debilitations whose effects, along with those of uncontrolled seizures, ripple outward in challenging ways. Using data from 25 Californian (US) parents who favored providing cannabis to their ill children to meet the iatrogenic burdens of biomedical epilepsy treatments in 2015, well before cannabis's present destigmatization, this paper explores parental refiguration of the effects of clinical iatrogenesis as inevitable - and as productive of evidence necessary to finding better options. In attending to the generative dimensions of iatrogenesis, this paper strives to help clarify the dilemma for parents who critique biomedicine's isolating, materialist, and sometimes apparently haphazard approach to their children, but depend on biomedical and associated systems for their family's well-being nonetheless. Along the way, this paper underscores raced and gendered dimensions of their experiences. Rather than rejecting biomedicine, most hung on tightly, blaming the uncontrolled seizures and their aftermath on a lag in 'the science' and pointing to the cultural idea that every child is unique in explaining their own children's non-responsiveness to treatment thus far. Likewise, they worked to determine effective cannabis regimens with scientised rigour. However, in the end - and in keeping with a culture of (male) Whiteness - stigmatisation, fatigue from chronic care provision, faith in science, and a need for a biomedically-mediated form of social belonging underwrote a majority desire for cannabis's incorporation into the official biomedical pharmacopeia.