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

Abstract

a b s t r a c t 'Experiential knowledge' is increasingly recognised as an important influence on reproductive decisionmaking. '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 impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007 e9 and the other in 2013e4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between 'lived experience' of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, 'knowledge' through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that 'knowledge' is an inappropriate vessel with which to capture and transfer 'experiential knowledge'. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it 'knowledge'.

Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives

“…Several qualitative studies have provided varying perspectives of the reality and quality of life for patients and carers living with SMA, which may be dependent on individual lived experiences, SMA type and level of appropriate resources. 9–11 Understanding the range and extent of unmeasured costs incurred by families caring for a child with SMA is important for identifying gaps in the provision of care, informing cost-effectiveness analyses and providing a comprehensive account of the economic burden of disease. Such information is timely, with the first regulatory approval of nusinersen for the treatment of SMA and the likely transformation of treatment options over the next few years, to be able to make a case for new therapies and to evaluate their impact.…”

‘They don't know themselves, so how can they tell us?’: parents navigating uncertainty at the frontiers of neonatal surgery

“…The experiential knowledge they shared became ‘authoritative knowledge’ that they could draw on to bolster their confidence as parents and advocates for their children. Boardman's more recent work on experiential knowledge of disability () in the context of pre‐natal screening tackles head‐on the tension also experienced by several of the parents in our study, that of the challenge to ‘experiential knowledge’ as inferior to medical knowledge. Boardman makes the distinction between the ‘lived experience’ and the ‘experiential knowledge’ and argues that experiential knowledge can have multiple and often competing frameworks.…”

“…). We also draw on examinations of the development and use of experiential knowledge (Abel and Browner , Boardman , Borkman ); that gained through either ‘embodied’ (direct bodily experience) or ‘empathetic’ (knowledge gained through close emotional ties with others) experience of a phenomenon (Abel and Browner ).…”

“I didn’t take it too seriously because I’d just never heard of it”: Experiential knowledge and genetic screening for thalassaemia in the UK

“…Although Mahila had previously described her experiential knowledge as being instrumental to the way she and Haneef approached reprogenetic decision‐making, allowing them to feel more comfortable with the idea of having a thalassaemic child than they might otherwise have been, her experiences of growing older with thalassaemia also highlighted to her the parts of the thalassaemia trajectory that Mahila's experiential expertise could not yet reach. The shifting nature of her experiences brought into critical relief the intrinsic limitations of this type of knowledge when used as a measure of disease severity and projected quality of life for future generations (Boardman, ). While on the one hand giving them privileged insight into the disorder, experiential knowledge also emerged from Mahila's account as a bounded form of insight, both limited, and contoured, by the unique set of circumstances through which it was generated.…”