11_Epstein - Lay Expertise - Epstein/ AIDS Activism 417 a...

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Unformatted text preview: Epstein/ AIDS Activism 417 a Yet,while demonstrations ndstreettheaterremainedthe signaturetacticsof groups such as ACT UP and attractedthe attention of the media, such techniquesdid not lend themselves to nuancedcritiqueof specific research practicesor priorities.Althoughsome activistsopposed "sittingat the table" with representatives f the scientific and governmentalelite (Wolfe 1994), o most treatment ctivists favoreda strategyof directnegotiation: a I mean,I wouldn'texaggerate ow politewe were.... I wouldjust say thatit was h clearfromthe verybeginning, s MaggieThatcher aidwhenshe metGorbachev, a s "Wecan do business." e wantedto makesome moralpoints,butwe didn'twant W to wallowin beingvictims,orpowerless, roppressed, ralwaysright. ewanted o o W to engageandfind out if therewas commonground.(Hamngton1994)12 But to engage fully with the project of biomedical research, treatment activists needed to undergoa metamorphosis,to become a new species of T expertthatcould speakcrediblyin the languageof the researchers. his was the agendathattreatment ctivistspursuedover the next several years. a Credibility Tactics As Shapin(1990, 993) has noted in an analysis of the historicalconstitution of the expert/laydivide, the questionof who possesses culturalcompetence is "oneof the most obvious meansby which we, andpeople in the past, discriminatebetween 'science' and 'the public.'" The most crucial avenue a o pursued y treatment ctivistsin the construction f theirscientificcredibility b has been precisely the acquisition of such competence by learning the language and culture of medical science. Througha wide variety of methr ods-including attendingscientificconferences,scrutinizing esearchprotocols, andlearningfrom sympathetic rofessionalsboth inside andoutsidethe p movement-the core treatment ctivists have gained a working knowledge a of the medical vocabulary. hile activists have also insisted on the need to W bring "nonscientific"language and judgments into their encounters with researchers,they have nonetheless assumed that the capacity to speak the languageof the journal article and the conferencehall is a sine qua non of theireffective participation.13 In a learning approach that one such activist characterizes frankly as "ass a backwards," ctivistsoften begin with the examinationof a specific research a protocolin which patientshave been askedto participate nd, fromthere,go on to educate themselves aboutthe mechanismof drug action, the relevant "basicscience"knowledge base (such as considerationsof the viral replication cycle of HIV or the immunopathogenesisof AIDS), and the inner ...
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This note was uploaded on 10/10/2010 for the course ENG 000121 taught by Professor Mcgrand during the Spring '10 term at Cornell University (Engineering School).

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