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11. The Role of the Concept of Alzheimer Disease in the Development of the Alzheimer’s Association in the United States
- Johns Hopkins University Press
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11 The Role of the Concept of Alzheimer Disease in the Development of the Alzheimer’s Association in the United States Patrick J. Fox Biological, clinical, and epidemiological characterizations feature prominently in social scientific analyses of human disease and infirmity. In some instances, these conceptualizations are viewed critically as sociohistorically derived representations of biomedical phenomena (cf., Lock and Gordon 1988; Nicolson and McLaughlin 1988; Wright and Treacher 1982). Analytic attention is focused on social processes within which the ontological status of disease comes to be characterized, altered , and accepted by medical and nonmedical groups within specific social and historical conditions. In other instances, biomedical constructs are viewed as part of the ‘‘background’’ or context for explaining the conditions and factors that lead to the development of organized social and policy responses to disease entities (e.g., Rettig 1977; Strickland 1972). Such studies approach biomedical conceptualizations as having social utility because they are depictions of reality. In this chapter, I depart from these analytic approaches to biomedical constructs of disease. Instead, I examine ways in which the biomedical characterizations of Alzheimer disease (AD) are strategically related to the emergence of a social movement dedicated to the eradication of 210 Patrick J. Fox the disease. This line of inquiry explores the link among cultural apparatus (e.g., systems of ideas, rhetoric, symbols), the structure and goals of the movement, and the mobilization of efforts to achieve policy change (cf., Laruna, Johnston, and Gusfield 1994). In particular, it stresses the ways in which cultural forms are used as ideological resources for transforming personal troubles into shared grievances, and the processes that result in organized social and political responses to alter these grievances (McAdam 1994). By examining the emergence of this disease-based social movement, I highlight the importance of what have been termed ‘‘cognitive frames,’’ ‘‘ideological packages,’’ ‘‘cultural discourses’’ (Tarrow 1994), or ‘‘strategic frames’’ (Zald 1996) in generating collective representations that are a basis for participation in social movements and identification of political opportunities. A second level of inquiry emphasizes the centrality of social structural conditions and the mobilization of various political, economic, and organizational resources toward the advancement of social and institutional change (McCarthy and Zald 1987). This approach links social institutions with ‘‘resource mobilization’’ strategies to explain the factors that facilitate the emergence, growth, and accomplishments of collective action. Bringing the two lines of inquiry into focus is one way to account for processes that give rise to the emergence of disease-based social movements, as well as to illuminate the public and institutional policy outcomes of movement formation (McAdam 1994; McCarthy and Zald 1987). I draw on these insights to illustrate how biomedical conceptualizations of AD provided a strategic framework for social movement structures and goals, and for the development of public policies to deal with the consequences of this disease. Although the line that separates social movement activity from interest group activity is rarely clearly demarcated empirically, organized collective activity focusing on AD began as a social movement that was organized in response to the perception that inadequate societal resources were available to assist people affected by the disease. As Walker (1991) argued, the entrenched interest-group system generally does not allow for the expression of concern about emerging new problems. But shifts in biomedical conceptualizations of AD allowed it to be characterized as an emerging new problem in American society that justified organized social and political action. I narrow my analysis to conceptualizations advanced in the late 1970s and early to mid-1980s because it was in these years that the modern medical meanings of AD in the United States took shape and came to be publicly understood. It was also during this time that groups [54.205.179.155] Project MUSE (2024-03-19 04:36 GMT) The Role of the Concept of Alzheimer Disease 211 of people began to publicly identify the disease’s effects on their personal lives and to collectively organize a social movement and then interest groups as a response to these experiences. Biomedical conceptualizations of AD served as resources for defining clinical and epidemiological dimensions of the disease, as well as for cognitive frames to identify common interests around which to organize group action among participants. At the end of the 1980s, federal policy responses to AD favored biomedical research and disfavored the health and social service needs of affected groups. The AD movement generally can be characterized as having followed a ‘‘grassroots’’ model (Rucht...