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Silence at the end of life: Multivocality at the edges of narrative possibility
American Anthropologist ( IF 3.139 ) Pub Date : 2023-09-12 , DOI: 10.1111/aman.13922
Annemarie Samuels 1
Affiliation  

“If God wants her to get better, she will get better,” Nila said in a comforting way.1 We were in a major public hospital in the city of Banda Aceh, standing at the bedside of a young woman suffering from AIDS-related toxoplasmosis, and talking to the mother who nodded acquiescingly while gently rubbing her unconscious daughter's cold legs. Back in the hospital corridor, Nila whispered that it was extremely rare that anyone would recover from such a grave condition. Nila was one of the HIV-support-group workers with whom I conducted participant observation during my ethnographic fieldwork on HIV care in the Indonesian province of Aceh. Her soothing religious words were exemplary of a way of talking that characterized interactions and stories of end-of-life care. Rarely would caregivers directly refer to the end of life as nearby, or dying as a process one needed to start preparing for. Life and death, people in Islamic Aceh cautioned, are in God's hands, so one could never know with certainty whether the last phase of life had started.

In recent decades, there has been a growing societal and academic interest in silence around death and dying. With the growing medicalization of death, social scientists argue, dying has become at once further postponed and more difficult to discuss, giving rise to countertrends that encourage an open discussion of dying.2 Yet, if the unspeakability of dying is increasingly thought of as a problem, anthropologists have also nuanced the emphasis on speech in end-of-life care models, showing how people may care in and through silence (Shohet, 2021), how different cultural and ethical notions of (not) discussing death and dying meet (Arkin, 2020; Aulino, 2019; Stonington, 2020) and how nondisclosure of terminal illness may be a way to cope with social and psychological demands, by temporarily living “as if” healing would still be possible (Banerjee, 2020). As processes of dying are culturally diverse and always socially situated, so are the affects, experiences, and moral evaluations of the silences that permeate the social worlds people navigate at the end of life.

Extending this line of inquiry, in this essay I attend to modes and moralities of (not) articulating dying in situations of advanced illness, highlighting the multivocality of narrative praxis in silent reverberations. Drawing ethnographically on the narrative of one HIV-positive Acehnese mother caring for her two critically ill children, I explore expressions in between articulation and nonarticulation, the affordances and limits of such multivocal expressions, and the histories that they reverberate. Zooming in on end-of-life caregiving as a practice in which the ethical work of articulation and nonarticulation is particularly salient, this exploration of silent reverberations also underscores ethnography's potential for broadening narrative horizons by listening to silences in a way that, as Dragojlovic (2023) suggests, neither celebrates silent agency nor assumes speech to be “the only pathway for achieving equality and empowerment.” As Mary Steedly (1993, 2013) has shown in her work on Sumatran Karoland, attending to expressions beyond dominant narrative conventions helps us hear ephemeral stories, stories that are at the limits of narrative possibility but also reshape those limits. Hearing silent reverberations within and beyond narratives requires, as this collection suggests, an affective and relational practice of attuned listening (see introduction, 2023). As narratives entangle personal and socio-historical silences, an attuned listening to narrative expressions may help us attend to the silent reverberations paradoxically present in words, sentences, and gestures that reconfigure—if ever so slightly—narrative possibilities, even, or perhaps particularly, at the end of life.



中文翻译:

生命尽头的沉默:叙事可能性边缘的多声性

“如果上帝希望她好起来,她就会好起来,”尼拉安慰地说。1我们在班达亚齐市的一家大型公立医院,站在一位患有艾滋病相关弓形体病的年轻妇女的床边,与这位母亲交谈,她一边默许地点点头,一边轻轻地揉着昏迷不醒的女儿冰凉的双腿。回到医院走廊,妮拉低声说道,如此严重的情况下能康复的人是极其罕见的。尼拉是艾滋病毒支持小组的工作人员之一,我在印度尼西亚亚齐省进行艾滋病毒护理民族志实地考察期间与她一起进行了参与观察。她舒缓的宗教话语是一种以临终关怀互动和故事为特征的谈话方式的典范。护理人员很少直接将生命的终结视为即将到来,或将死亡视为一个需要开始准备的过程。伊斯兰教亚齐省的人们警告说,生与死掌握在上帝的手中,因此人们永远无法确切地知道生命的最后阶段是否已经开始。

近几十年来,社会和学术界对死亡和临终保持沉默的兴趣日益浓厚。社会科学家认为,随着死亡的医学化程度不断提高,死亡立即变得进一步推迟,也更难以讨论,从而引发了鼓励公开讨论死亡的反趋势。2然而,如果死亡的难以言说越来越被认为是一个问题,人类学家也对临终关怀模型中对言语的强调进行了细致入微的研究,展示了人们如何在沉默中或通过沉默进行关怀(Shohet,2021 , (不)讨论死亡和垂死的文化和伦理观念相一致(Arkin,2020;Aulino,2019;Stonington,2020),以及不披露绝症如何可能成为应对社会和心理需求的一种方式,通过暂时生活“好像“治愈仍然是可能的(Banerjee,2020)。由于死亡过程在文化上具有多样性,而且总是具有社会背景,因此人们在生命结束时所经历的社会世界中弥漫着的沉默的影响、经历和道德评价也是如此。

延伸这条探究路线,在本文中,我关注在晚期疾病情况下(非)阐明死亡的模式和道德,强调无声回响中叙事实践的多义性。我以一位艾滋病毒呈阳性的亚齐母亲照顾她的两个危重孩子的叙述为基础,从民族志的角度出发,探讨了清晰表达和非清晰表达之间的表达方式、这种多声表达的可供性和局限性,以及它们所产生的历史影响。聚焦临终关怀作为一种实践,其中清晰表达和不清晰表达的伦理工作尤为突出,这种对无声回响的探索也强调了民族志通过倾听沉默来拓宽叙事视野的潜力,正如德拉戈伊洛维奇(Dragojlovic)所言:2023)表明,既不庆祝沉默的机构,也不认为言论是“实现平等和赋权的唯一途径”。正如玛丽·斯蒂德利(Mary Steedly,1993,2013)在她关于苏门答腊卡罗兰的作品中所表明的那样,关注主流叙事惯例之外的表达有助于我们听到短暂的故事,这些故事处于叙事可能性的极限,但也重塑了这些极限。正如本集所暗示的那样,听到叙事内外的无声回响需要一种情感和关系性的协调聆听实践(见简介,2023)。当叙事将个人和社会历史的沉默纠缠在一起时,对叙事表达的协调聆听可能会帮助我们关注在单词、句子和手势中矛盾地存在的无声回响,这些回响重新配置(如果有那么轻微的话)叙事的可能性,甚至,或者也许特别是,在生命的尽头。

更新日期:2023-09-12
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