Human experience in disablement: the imperative of the ICIDH

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Abstract
Summary The ICIDH recognizes that the perspectives of people whose lives are personally shaped by disablement are critical to improving our understanding of disease consequences. However, this ‘insider's perspective’ has received comparatively little attention in medical research. This article suggests that the weight of medical history mitigates against human experience as a focus of investigation, traces the history of the International Classification of Diseases (ICD) from this perspective, and suggests that these historical influences are still operative in disablement studies. The ICIDH's inclusion of the insider's perspective represents a significant departure from traditional ways of thinking in medical science, and allows for important changes in the discourse about disablement. This article uses phenomenological theory to show how the insider's perspective might be more fully integrated into clinical research and theory development. Finally, this article suggests modifications to the ICIDH that would help to include more explicitly the insider's perspective in its structure.