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Keywords:

  •  breast cancer;
  • comparative historical;
  • culture;
  • disease regime;
  • gender;
  • illness experience;
  • narrative;
  • sexuality;
  • social movements;
  • social structures

Abstract

This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. This article explores the impact of social movements on the regime of breast cancer and makes four contributions to the scholarship on illness experience. First, it offers the concept disease regime as a way of conceptualising the structural shaping of illness experience. Second, it demonstrates the value of incorporating social movements more thoroughly into the study of illness experience. Third, it proposes that social movements change illness experiences in two ways: (1) by changing the sufferer or her relationship to the regime's practices; and (2) by changing and expanding the regime's actual practices. And fourth, it demonstrates how gender and sexuality are constituted within disease regimes and are challenged by social movements. This article is informed by four years of ethnographic research conducted in the San Francisco Bay Area between 1994 and 1998, supplemented by historical research and more than 40 taped interviews and oral histories with current and former breast cancer patients, activists, educators, scientists, support group leaders and volunteers.