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focus groups stated that they would just get five references for a term paperany fivesince that is what the professor wanted, and references had better be ones that are listed electronically and available without walking across campus. |
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The ICD classification is in many ways an ideal mirror of how people designing global information schemes struggle with uncertainty, ambiguity, standardization, and the practicalities of data quality. Digging into the archives, and reading the ICD closely through its changes, reveals some of the upstream, design-oriented decisions informing the negotiated order achieved by the vast system of forms, boxes, software, and death certificates. At the same time, we have been constantly aware of the human suffering often occasioned by the apparently bloodless apparatus of paperwork through which these data are collected. |
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Part II:
Classification and Biography |
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The second part of this book looks at two cases where the lives of individuals are broken, twisted, and torqued by their encounters with classification systems. This often invisible anguish informs another level of ethical inquiry. Once having been made, the classification systems are applied to individual casessometimes resulting in a kind of surreal bureaucratic landscape. Sociologist Max Weber spoke of the "iron cage of bureaucracy" hemming in the lives of modern workers and families. The cage formed by classification systems can be constraining in just this way, although cage might be too impoverished a metaphor to describe its variations and occasional stretches. In chapters 5 and 6 we look at biography and classification. We chose two examples where classification has become a direct tool mediating human suffering. Our first case concerns tuberculosis patients and the impact of disease classification on their lives. We use historical data to discuss the experience of the disease within the tuberculosis asylum. |
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Tuberculosis patients, like many with chronic illness, live under a confusing regime of categories and metrics (see also Ziporyn 1992). Many people were incarcerated for yearssome for decadeswaiting for the disease to run its course, to achieve a cure at high altitudes, or to die there. They were subjected to a constant battery of measurements: lung capacity, auscultation, body temperature and pulse rate, x-rays, and, as they were developed, laboratory tests of blood and other bodily fluids. The results of the tests determined the degree of free- |
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