Experience as knowledge : disability, distillation and (reprogenetic) decision-making

‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its permanent state of flux and its inferiority to (medical) knowledge. This paper explores some of these critiques through an analysis of the nature and uses of experiential knowledge within the context of reproductive decision-making. Seventeen women with Spinal Muscular Atrophy (SMA) or with SMA in their family living in the UK took part in two in-depth interviews: one in 2007-9 and the second in 2013-4. By comparing and contrasting these women’s accounts at two time points, the stark contrast between ‘lived experiences’ of SMA and the various way(s) these experiences came to be transformed into, and presented as, ‘knowledge’ by and through reproductive decisions is demonstrated. Through so-doing, this paper highlights the contrasting- and sometimes competing- experiential frameworks for understanding SMA that emerge from this process across time and context. However, rather than presenting this as evidence of fallibility, this paper argues for a move away from the notion that ‘knowledge’ is an appropriate vessel with which to understand, capture and transfer the experiential. Rather, we need to consider how to value such insights in ways that harness their inherent strengths without leaving simultaneously leaving them vulnerable to the epistemological critiques attracted by the label of ‘knowledge’