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Experiential knowledge of disability informs reproductive choices, but is often dismissed. This study shows lived experience of Spinal Muscular Atrophy (SMA) is a valuable resource, not flawed knowledge.

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Decision-makingDisabilityExperiential knowledgeGeneticsReproductionSpinal Muscular AtrophyUnited Kingdom

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Area of Science:

  • Reproductive Health
  • Disability Studies
  • Sociology of Knowledge

Background:

  • Experiential knowledge, particularly of disability, influences reproductive decisions and prenatal screening.
  • This 'lived experience' is often critiqued for being subjective and less valid than medical knowledge.

Purpose of the Study:

  • To explore critiques of experiential knowledge in reproductive decision-making.
  • To analyze how lived experience of Spinal Muscular Atrophy (SMA) is transformed into 'knowledge' for reproductive choices.

Main Methods:

  • Qualitative study involving 17 UK women with Spinal Muscular Atrophy (SMA) or family history of SMA.
  • Two in-depth interviews conducted between 2007-2009 and 2013-2014, comparing accounts over time.

Main Results:

  • Demonstrates a contrast between the visceral reality of living with SMA and its presentation as 'knowledge' for reproductive decisions.
  • Identifies multiple, distinct, and sometimes competing experiential frameworks for conceptualizing SMA across time and contexts.

Conclusions:

  • Labeling lived experience as 'knowledge' is inappropriate and exposes it to epistemological critique.
  • Advocates for valuing experiential insight for its inherent strengths without vulnerability to such critiques.