我生病,丢了谁的面子?以“脸面”为路径的叙事分析与病耻感的转化机制

宫贺, 刘子聪, 熊慧, 林一洲

国际新闻界 ›› 2023, Vol. 45 ›› Issue (7) : 93-113.

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国际新闻界 ›› 2023, Vol. 45 ›› Issue (7) : 93-113.
研究论文

我生病,丢了谁的面子?以“脸面”为路径的叙事分析与病耻感的转化机制

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I Am Ill, But Whose Mianzi is Lost: Narrative Analysis of the Internalization of Stigma Based on the “Face-Mianzi Model”

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摘要

本研究以“深度疾病”患者的叙事分析为方法,以中国本土社会学的“脸面”模型为框架,尝试从面子折损与获得的社交情境出发,探究以白化病为代表的这类“被看见”的病症,其患者从感知污名到污名内化为耻感的转化机制。研究发现,“月亮孩子之家”微信公众号的患者叙事呈现了“脸面”传导的三种效应:一致效应,家庭对“面子”的无视成为污名内化为耻感的重要“防线”;混合效应,白化病患者在获得社会支持后努力通过个人进取、为自己“挣脸”的方式以“回馈”帮助者、维护帮助者的“面子”,社会支持在一定程度上阻滞了病耻感的内化;异质效应,社会关系中的他人要求患者维护“面子”时,来自家庭与社会他者的双重压力使患者陷入习惯性自我怀疑与否定,污名转化为病耻感。在理论与方法层面,本研究尝试勾连中国本土面子理论与健康叙事的内容与结构分析;在应用层面,希望藉此唤起健康干预对患者因面子问题而陷入社交、失业等恶性循环困境的关照,亦探讨了研究对患者群体的意义、局限性以及可能进路。

Abstract

Adopting the method of narrative analysis and the theoretical framework of “Face-Mianzi Model”, this study investigates the mechanism of how stigma is internalized and transformed into shame by albinos. Through the analysis of the life stories posted on the official WeChat account of the “Chinese Organization for Albinism”, three kinds of transmission effects of Face-Mianzi were found: the consistency effect, in which family members are brave enough to face the challenge of “mianzi-saving”, can prevent the stigma experienced by patients from internalizing into shame; the hybrid effect, in which patients strive for better performance after receiving support from others to save mianzi for themselves and their supporters, can effectively alleviate patients’ shame; the controversy effect, when patients feel that significant others “lost mianzi”, can cause a feeling of “losing face”, with the result that stigma is internalized as shame in patients. Practical implications, research limitations, and future approaches are also discussed.

关键词

污名 / 耻感 / 脸面异质性 / 深度疾病 / 白化病 / 疾病叙事

Key words

stigma / shame / Face-Mianzi Model / deep illness / albinism / illness narrative

引用本文

导出引用
宫贺, 刘子聪, 熊慧, . 我生病,丢了谁的面子?以“脸面”为路径的叙事分析与病耻感的转化机制[J]. 国际新闻界. 2023, 45(7): 93-113
GONG He, LIU Zicong, XIONG Hui, et al. I Am Ill, But Whose Mianzi is Lost: Narrative Analysis of the Internalization of Stigma Based on the “Face-Mianzi Model”[J]. Chinese Journal of Journalism & Communication. 2023, 45(7): 93-113

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注释 [Notes]

1. 人民网. 国家卫生健康委员会等五部门联合制定《第一批罕见病目录》[EB/OL].. http://health.people.com.cn/n1/2018/0611/c14739-30050014.html. 2018-06-11.

2. 中国青年网. 2019年中国罕见病大会在北京开幕[EB/OL]. http://news.youth.cn/jsxw/201910/t20191019_12098095.htm. 2019-10-19.

3. 网易新闻. 非洲“白人”:血液被称作“液体黄金”,警察24小时保护不离身[EB/OL]. https://www.163.com/dy/article/FU4F1E7J0543L1FT.html. 2020-12-18.

4. 同注释2。

5. 同注释2。

6. 人民日报海外版. 让罕见病患者走上自助和助人之路[EB/OL]. http://paper.people.com.cn/rmrbhwb/html/2021-07/16/content_3058324.htm. 2021-07-16.

基金

中国人民大学“双一流”建设马克思主义新闻观创新研究(MXG202308)

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