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“只要有一线希望,我就愿意尝试”:城市中国父母为自闭症治疗而追求的道德体验。

"As Long as There's a Glimmer of Hope, I'm Willing to Try": The Moral Experiences of Parental Pursuit for Autism Therapy in Urban China.

机构信息

School of Ethnology and Sociology, Yunnan University, Kunming, Yunnan, China.

出版信息

Med Anthropol. 2024 Jul 3;43(5):455-468. doi: 10.1080/01459740.2024.2376005. Epub 2024 Jul 24.

DOI:10.1080/01459740.2024.2376005
PMID:39046334
Abstract

In today's China, countless parents embark on a journey of moral peril in search of treatment for their children with autism, navigating a bustling yet chaotic market of therapies. Based on 13 months of fieldwork in the Pearl River Delta, this study examines how the boom of China's autism therapy industry has plunged parents, who are relentlessly striving for their children's futures, into deeper vulnerability. I view the "ethics of trying" as parental enactment of their moral agency in seeking therapy and reveal how it serves as a moral engine for the industry's growth in the early 21st century, as well as how it leads to moral tragedies for parents as new norms of therapeutic choice emerge with government and professional guidance compelling them to make optimal therapeutic choices within a critical developmental window. Although parental efforts to avoid "agent-regret" can paradoxically lead to significant remorse, the moral tragedy they encounter can also prompt reflection and reevaluation of their approach to their child's condition.

摘要

在中国当下,无数家长为孩子寻求自闭症治疗,在纷繁复杂的治疗市场中冒险前行。本研究通过在珠三角地区为期 13 个月的实地调查,探讨了自闭症治疗行业的繁荣如何使那些为孩子的未来不懈努力的家长陷入更深的脆弱境地。我将“尝试的伦理”视为家长在寻求治疗时发挥道德能动性的表现,并揭示了它如何在 21 世纪初成为该行业发展的道德引擎,以及随着政府和专业指导的介入,促使家长做出最佳治疗选择,而新的治疗选择规范又使他们陷入道德悲剧。尽管家长们为避免“代理后悔”而付出的努力可能会带来巨大的悔恨,但他们在面对孩子病情时所遭遇的道德悲剧也会促使他们对自己的治疗方法进行反思和重新评估。

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