摘要
本研究通过对京郊地区异地就医白血病患者家庭的网络众筹文本和实践进行调查和分析,发现筹款者在众筹的文本叙事和实践中以极高的主体性叙事来获取社会支持。这种主体性具体表现在意志坚强、关系家庭、以“借”还“帮”三种策略维度,本研究将之定位为“过三关”。家庭成为叙事的核心,家庭为中心、孩童为无价之宝的信念成为叙事者最重要的自我意识,这种自我意识超越了公开筹款所带来的对面子和尊严的“损伤”。面对重大疾病所带来的打击,白血病患者家庭将坚持和坚强作为一种正义准则,并内化为自身的德性。在道德自证的实践中,“好心人”的“回报”不仅体现在众筹文本的叙事当中,更体现在家庭成员对患者永不放弃的照护、对病友群体的微小支持以及对陌生“好心人”的感恩和热爱等方面。通过众筹文本和日常实践,白血病病友及家属自证了内心的良知和德性。
Through an investigation and analysis of the online crowdfunding texts and practices of leukemia families in suburban Beijing,this study found that these families demonstrate a high degree of subjectivity in their crowdfunding narratives and strategies to gain support.This subjectivity is expressed in three strategic dimensions:strength of will,the relationship with family,and"borrowing"to"help."These dimensions are framed as"passing three hurdles,"in which the fundraiser showcases the patient's resilience,identifies the self through the lens of family,and seeks support by invoking discourses such as"what I mean to the family"and"what the family means to me"This relational self-consciousness,centered on family identity,becomes the most crucial aspect of the fundraiser's selfidentity.First,the family is positioned as the narrative subject,with the belief that the family is central and children are invaluable,fostering a relational self that transcends the loss of face and dignity often associated with public fundraising.Second,when faced with the devastation of serious llness,leukemia families turn perseverance and strength into a code of justice and a personal virtue.Finally,the practice of demonstrating virtue includes the belief in"family as self,"which becomes the most vital self-identification for the fundraiser.In the practice of proving their virtue,the concept of"return"to well-wishers is not only reflected in the crowdfunding narrative but also in the family's relentless care for the patient,their support for the patient's friends,and their gratitude toward ordinary strangers in the community.Through their crowdfunding texts and daily actions,leukemia families prove their inner conscience and virtue,achieving self-validation through these concrete practices.
作者
杨娇
苏春艳
陈爱茹
YangJiao;Su Chunyan;Chen Airu
出处
《传媒观察》
CSSCI
2024年第9期99-109,共11页
Media Observer
基金
2019年国家社科基金项目“互联网医疗平台上的医患关系研究”(19BSH178)的研究成果之一。
关键词
互联网众筹
疾痛叙事
“回报”
道德自证
Crowdfunding on the Internet
Narratives of Pain and Suffering
"Payback"
Self-Evidence of One's Moral Integrity
