8_Epstein - Lay Expertise - 414 Science,...

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Unformatted text preview: 414 Science, Technology,& HumanValues into accomplishthe mass conversionof disease "victims"11 activist-experts, and in thatsense the AIDS movementstandsalone, even as it begins to serve as a model for others.Its distinctiveapproach owardscientific and medical t questions owes to a specific constellationof historicaland social factors. To some extent, the uniquefeaturesof the clinical pictureof AIDS have shapedthe developmentof an activistresponse.AIDS andHIVhave affected many young people in theirtwenties andthirties-a groupfor which thereis little social expectationthat they will passively await death. Indeed, those who test positive on HIV antibodytests (availablesince 1985) are likely to be told by medicalauthorities o expect some numberof years of outwardly t normalhealthbeforethe onset of symptoms.Duringthis period,activism not only is feasible from a physical standpoint,but seems eminently practical from a political and psychological standpoint. t Even more fundamentally, he distinctive social epidemiology of AIDS has shaped the characterof the public engagementwith science. From the start and up to the present day, AIDS has been understood, both in epidemiologicaland lay parlance,as a disease of certainalready-constituted social groups distinguishedby their lifestyle, their social location, or both. As a result, the very meaning of AIDS is bound up with the cultural o understandings f what such groups are like, while the very identityof the groups is shaped by the perceptionof them as "the sort of people who get this illness." If AIDS were not deadly, if it were not associated with taboo topics such as sex and druguse, and if the groupsaffectedwere not already stigmatizedon othercounts,suchlinkagesbetweenidentityandillness might be of little consequence.As it is, the AIDS epidemichas engenderedfearand prejudiceand has sparkedthe necessity,on a mass scale, for what Goffman o (1963) once called "themanagement f spoiled identity." Gay men, the groupwhose identityhas been shapedmost thoroughlyby a the confrontation nd associationwith the epidemic,enteredthe eraof AIDS equippedwith a whole set of crucialresourcesto engage in the struggleover social meanings.In the recentpast,gays andlesbiansin the UnitedStateshad achieved a singularredefinitionin social status, challenging the dominant frames of homosexualityas illness or immoralityand reconstitutingthemselves as a legitimate"interest roup"pursuingcivil rightsandcivil liberties. g m With the limited successes of the "homophile" ovementof the 1950s and 1960s andthe moresubstantial mpactof the gay liberationmovementof the i 1970s, gay men andlesbiansrecastedsocial norms,constructed rganizations o and institutions, and established substantialand internally differentiated subculturesin urban centers throughoutthe United States (Adam 1987; Altman 1982; D'Emilio 1983). ...
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