This chapter explores how measuring lived experiences of breathing through creative methods can resituate disabled people within their own medical narratives and provide vital information guiding treatment decisions. The chapter takes as its starting point Hale’s account of observing and quantifying a decline in their lung function through its impact on their experience of performing the same text over time. Through examining poetry as a measure, control, and diagram of breath, we explore creative and patient-led alternatives to standardized clinical measures. Representing a range of artistic, academic, and patient perspectives, as well as breathing subject positions, we offer an interdisciplinary take on respiration and the clinical encounter. We draw on image studies, ethnographic methods, and literary theory to historicize statistical norms and re-examine medical imaging. By centering the human role in the interpretation of medical imaging, patient testimony, and examination procedures, the authors problematize the boundaries between subjective and objective in the medical measurement of breath. The critical questions we seek to address include: What other measurement scales exist for embodied experiences of respiratory illness? How is expertise derived from lived experience in tension with treatment plans, diagnostic testing, and medicalization in general? How might art and art-making center first-person narratives of respiratory illness and produce new knowledge in clinical settings? Ultimately, the chapter argues that incorporating rich, experientially informed, metaphorical (yet fundamentally embodied) data into the diagnostic process affords clinicians a more holistic and co-produced approach to patient care.

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Instruction Manuals for Breathing: Measuring Respiration Through Text and Image

  • Grace Joseph,
  • Jamie Hale,
  • Louise Atkinson,
  • Kirsty Liddiard

摘要

This chapter explores how measuring lived experiences of breathing through creative methods can resituate disabled people within their own medical narratives and provide vital information guiding treatment decisions. The chapter takes as its starting point Hale’s account of observing and quantifying a decline in their lung function through its impact on their experience of performing the same text over time. Through examining poetry as a measure, control, and diagram of breath, we explore creative and patient-led alternatives to standardized clinical measures. Representing a range of artistic, academic, and patient perspectives, as well as breathing subject positions, we offer an interdisciplinary take on respiration and the clinical encounter. We draw on image studies, ethnographic methods, and literary theory to historicize statistical norms and re-examine medical imaging. By centering the human role in the interpretation of medical imaging, patient testimony, and examination procedures, the authors problematize the boundaries between subjective and objective in the medical measurement of breath. The critical questions we seek to address include: What other measurement scales exist for embodied experiences of respiratory illness? How is expertise derived from lived experience in tension with treatment plans, diagnostic testing, and medicalization in general? How might art and art-making center first-person narratives of respiratory illness and produce new knowledge in clinical settings? Ultimately, the chapter argues that incorporating rich, experientially informed, metaphorical (yet fundamentally embodied) data into the diagnostic process affords clinicians a more holistic and co-produced approach to patient care.