The process of self-report of impairment in clinical research

This paper examines how labels for impairment are negotiated by people with disabilities during clinical assessment. It builds on Robert Murphyʹs (1987) explanations of the disability experience as rooted in the individualʹs sense of having multiple past, present and intended future body-selves. Using transcripts of five consecutive daily clinical research assessments, it describes the conduct of clinical research assessments with an older man with stroke-related motor impairments and dysphoria. It also examines how the researcher as Other shapes a personʹs sense of identity, experience and quality of life by regulating the medical labels for personal experience, and by authoring socially authoritative scientific models of disabilities. Points of dissension (regarding identity, discourse and time perspectives) and collaboration are identified and then illustrated with excerpts from the transcripts. Analysis reveals how salient personal experiences are locally asserted in discourse, and selectively misrepresented in the clinical research record.