LAUSR

When we met as graduate students at the University of Pittsburgh, both of us pursuing an MA in bioethics concurrently with a PhD in communication, we often found ourselves together in courses and colloquia. As mutual concerns and interests arose through classroom encounters, we recognized that many of our most dissatisfying—and often most heated—discussions with peers and professors circled around questions of what constitutes a particular quality of life (QoL) or health, from whose perspective QoL or health is assessed, and what values or measurements QoL or health is based on. We recall several early seminar-style conversations about disability and quality of life in which the second author (J.B.) would ask of our readings and of the group, “Where are the patient perspectives? Where are the voices of people with this condition?” In communication studies and in bioethics—but especially in bioethics—the insights of persons affected by a condition or a medical intervention were in many cases elided, replaced by less descriptive, “sanitized” medical terminology or ruled out by academic research journals’ preference for objective, quantitative data.