Laura Cupples

For the last eighteen months, I have worked with a group of disability and health policy researchers. I began this interview-based project trying to learn how these researchers’ disability identities shaped their work. How did their disability standpoint contribute to the liberatory nature of their research? I found that the disability standpoint of these researchers was in fact hard-won and grew not just out of their own disability experiences but out of their connections with the larger disability community. These connections, for the most part, helped researchers come to “claim crip,” and that later influenced their research.

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through particular interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system...

I examine the dynamics of measure development using two case studies: temperature, and health-related quality of life. I argue, following Bas van Fraassen and Leah McClimans that in each case these dynamics have a hermeneutic structure. Measure development is plagued by epistemic circularity, as is the task of interpreting a text, and similar strategies can be used in both measure development and hermeneutics to overcome that circularity. I show that Hans Georg Gadamer’s philosophical hermeneutics in particular are an effective lens through which to examine the development of the temperature standard as described by Hasok Chang. Despite similar grounding in hermeneutics, I note an important difference between measure development for temperature and for health-related quality of life. Namely, while the meaning of temperature can be standardized, the meaning of health-related quality of life cannot. This standardization of meaning for the temperature concept represents a limit to the analogy with hermeneutics. Finally, I argue that the indeterminacy we find in health-related quality of life measurement is a result not only of analogy with the hermeneutic task, but of full-fledged participation in it.