experience-as-knowledge-disability_boardman-felicity-k.md

title	authors	external_url	source_url	drive_links	course	tags	year	month	journal	volume	pages	publisher	openalexid
Experience as Knowledge: Disability, Distillation and (Reprogenetic) Decision-Making	Felicity K. Boardman	https://wrap.warwick.ac.uk/91991/9/WRAP-experience-knowledge-disability-distillation-making-Boardman-2017.pdf	https://doi.org/10.1016/j.socscimed.2017.09.013	https://drive.google.com/file/d/1UJNp0knk73yDq94g1pvOO2bfMM1favj7/view?usp=drivesdk	perception	medical-communication	2017	oct	Social Science & Medicine	191	186--193	Elsevier BV	W2753199387

By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between ‘lived experience’ of Spinal Muscular Atrophy 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’.