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患者行动主义的政治转变:从生物社会性到生物数字公民身份。

The shifting politics of patient activism: From bio-sociality to bio-digital citizenship.

机构信息

Monash University, Australia.

University of Plymouth, UK.

出版信息

Health (London). 2019 Jul;23(4):478-494. doi: 10.1177/1363459318815944. Epub 2018 Dec 7.

Abstract

Digital media provide novel tools for patient activists from disease- and condition-specific communities. While those with debilitating conditions or disabilities have long recognised the value of collective action for advancing their interests, digital media offer activists unparalleled opportunities to fulfil their goals. This article explores the shifting politics of 'activism' in the increasingly digitally mediated, commercialised context of healthcare, asking: what role have digital media played in the repertoire of activists' strategies? And, to what extent and how has the use of such media impacted the very concept of activism? Building on sociological ideas on emergent forms of 'biological citizenship' and drawing on findings from an analysis of available media, including television and print news reportage, online communications, published histories and campaign material and other information produced by activists in HIV/AIDS and breast cancer communities, we argue that digital media have profoundly shaped how 'activism' is enacted, both the goals pursued and the strategies adopted, which serve to broadly align contemporary patient communities' interests with those of science and business. This alignment, which we characterise as 'bio-digital citizenship', has involved a fundamental reorientation of 'activism' from less of a struggle for rights to more of a striving to achieve a public profile and attract funding. We conclude by calling for a reconceptualisation of 'activism' to more adequately reflect the workings of power in the digital age, whereby the agency and hopes of citizens are central to the workings of political rule.

摘要

数字媒体为来自特定疾病和病症的患者活动家提供了新颖的工具。虽然那些患有衰弱性疾病或残疾的人早就认识到集体行动对推进其利益的价值,但数字媒体为活动家提供了前所未有的机会来实现他们的目标。本文探讨了在日益数字化、商业化的医疗保健背景下,“行动主义”政治的转变,问题是:数字媒体在活动家策略的范围内扮演了什么角色?以及,此类媒体的使用在何种程度上以及如何影响了行动主义的概念本身?本文借鉴了关于新兴形式的“生物公民身份”的社会学思想,并利用对现有媒体的分析结果,包括电视和平面新闻报道、在线交流、出版历史和运动材料以及艾滋病病毒/艾滋病和乳腺癌社区活动家制作的其他信息,我们认为数字媒体深刻地塑造了“行动主义”的实施方式,无论是追求的目标还是采用的策略,都广泛地将当代患者群体的利益与科学和商业的利益保持一致。我们将这种一致性描述为“生物数字公民身份”,它涉及到“行动主义”的根本重新定位,从争取权利的斗争更多地转变为争取获得公众形象和吸引资金的努力。最后,我们呼吁重新概念化“行动主义”,以更充分地反映数字时代权力的运作方式,即公民的代理和希望是政治统治运作的核心。

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