7_Epstein - Lay Expertise - / Epstein AIDSActivism 413...

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Unformatted text preview: / Epstein AIDSActivism 413 intimateaspects of humanlife," their organizationstend to be "segmented, diffuse, and decentralized,"and their theatricalprotest tactics emphasize civil disobedience and a politics of representation(Johnston,Larana,and Gusfield 1994, 6-9). o Centralto the self-understanding f such movements is a focus on the values of autonomyandidentity.Yet as Cohen(1985, 694) argues,the salient featureof the new social movementsis not so much that they assertidentih ties-something all movementsdo-but that the participants ave become reflexively awareof theirown active involvementin contestedprocesses of identity construction.Although the constitutionof identitymay sometimes become an end in itself, Gamson (1992, 60) argues that it also serves an instrumentalfunction in the mobilization process, influencing not only people's willingness to "investemotionally"in the fate of the movementand "take personal risks on its behalf"but also their choices of strategiesand f organizational orms. This emphasis on identitypolitics has, in certaincrucialrespects, facilitated the capacity of AIDS activists to engage with scientific knowledge r A production. s Wynne(1992, 301) has noted,"theunacknowledged eflexive capability of laypeople in articulatingresponses to scientific expertise"is cruciallydependenton theirconstructionand renegotiationof a social idenb tity. Furthermore, ecauseidentitypolitics arepreoccupiedwith nonmaterial a a issues-with questionsof representation nd meaning-its practitioners re A inclined to wage struggles over the definition of reality.m? nd precisely becauseidentitypolitics standin oppositionto whatFoucault(1983, 211-12) s has called "normalization," uch movements are highly sensitive to the imposition of norms, categories, and interpretations y outside authorities. b A Understanding IDS activism as a new social movementhelps explain why i these activists might have a greaterinclinationand capacityto participate n the constructionof social meanings,includingforms of knowledge. The AIDS movementis broadbasedanddiverse,rangingfromgrassroots t activistsand advocacyorganizations o healtheducators, ournalists,writers, j service providers,people with AIDS or HIV infection,andothermembersof the affected communities.The membersof this movement are not the first group of laypeople to put forwardclaims to speak credibly on biomedical matters(see Dutton 1984; Shapiro1985;von Gizycki 1987). Canceractivists i in the 1970s, for example,providean interesting ounterpointn an analogous c andMarkle1981), while the feministhealthmovementis situation(Petersen perhapsthe clearestcase in point (Fee 1982). Patientself-help groups, now a common andrapidlyproliferating henomenon(Stewart1990), also somep times engage in the evaluationof scientific knowledgeclaims. But the AIDS movement is indeed the first social movement in the United States to ...
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