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The Doxa of Dignity: Dying Well with Susan Sontag and Maria Gerhardt.
IF 0.2 4区 文学 0 LITERATURE Pub Date : 2024-01-01
Tobias Skiveren

This essay questions the hegemony of "dignity" in contemporary bioethical debates about good deaths. It does so by exploring how cultural ideals organize the affective setting of death in David Rieff's memoir, Swimming in a Sea of Death (2008), and Maria Gerhardt's novel, Transfer Window [Transfervindue] (2019/2017). In depicting the emotional turmoil of terminal cancer, these pathographies reveal that the very ideals adopted to ensure a sense of dignity (autonomy and family involvement) may sometimes make an impending death even more unbearable. Recognizing lack of affective stability as death's ultimate problem, I utilize the utopian imaginaries of Gerhardt's fiction to suggest "anesthetic deaths" as an alternative bioethical ideal that channels intellectual resources from the Nordic welfare regimes into discussions otherwise marked by liberalism and conservatism.

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引用次数: 0
Race, Gender, and Genetic Privacy in Kay Redfield Jamison's An Unquiet Mind and Meri Nana-Ama Danquah's Willow Weep for Me.
IF 0.2 4区 文学 0 LITERATURE Pub Date : 2024-01-01
Sarah Hagaman, Jay Clayton

This essay analyzes two 1990s memoirs of women struggling with hereditary mental illness, who express anxiety about revealing their conditions and about whether their revelations will violate the privacy of their close relations. Midcentury confessional poetry influences the modes of self-disclosure in Kay Redfield Jamison's An Unquiet Mind (1995) and Meri Nana-Ama Danquah's Willow Weep for Me (1998), though the memoirs feature concerns about genetics and biological psychiatry absent from the 1960s confessional poetry. As we show, the language surrounding mental illness structures women's privacy in clinical settings and contains gendered and racial barriers to authentic self-representation. Intersectional language allows women to give voice to their conditions and to access a private identity on their own terms.

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引用次数: 0
The Insult Is in the FAQ.
IF 0.2 4区 文学 0 LITERATURE Pub Date : 2024-01-01
Samantha Barrick

There is a buzzing insurgence of interest in medical humanities, narrative medicine, and related arts-based programming aimed at ameliorating some of the tragic failings of our contemporary medical complex and the capitalistic grip it struggles within. This paper examines popular questions posed at the intersections of medicine and arts/humanities* to reveal underlying relationships of power, economy, and malappropriated™ imaginative labor in medical education and clinical settings. To do so, the author presents responses to three exemplary FAQs in unabashedly subjective manifestations of language including sarcasm, lyric, lament, defiance, and poetic wit, then organizes this data into four separate categories: Reframing Retorts, Analogies, Stage Whispers, and Apologetics.This method was not informed by a desire to forge a common language (we can each keep our own TYVM), but rather to place meaning halfway between these systems of knowledge production as a temporary compromise both enterprises can learn from; a sort of consensual linguistic drag, if you will. The results of this probe and analysis are presented in easy-to-skim charts for those even marginally interested in uncovering what is at stake in these imperfect, albeit inspiring, unions.Finally, the author proposes a new form of validating instrument to collect further data and seeks to transmit generalizable knowledge that can deepen our relationships to those around us at these intersections and beyond. A question emerges: is the way humanists and artists are treated in medical institutions analogous to the ways the internal lives of physicians are treated?*Can one really conflate art = humanities? Are they really in the same boat? The author acknowledges this uneasy melding, and asserts that the balance of similarities vs. differences is "context dependent." Read on.**Nota bene, the author is a poet and her biases towards, and knowledge of, poetics are disproportionately represented in her discussion of "the humanities."

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引用次数: 0
Editor's Foreword. 编辑前言
IF 0.2 4区 文学 0 LITERATURE Pub Date : 2024-01-01 DOI: 10.1353/lm.2024.a935824
Michael Blackie
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引用次数: 0
Irrecoverable 不能挽回的
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911444
Margarita Saona
Irrecoverable Margarita Saona (bio) "We'll get you back to that," the cardiologist said with a wide smile, pointing to a photo posted on the wall of my room in the Adult Surgical Heart Unit. It was a picture of me breaking a board with a sidekick from the floor of my karate school. I had suffered what a member of the cardiac team called a "fatal arrhythmia." At that point, my heart was being supported by extracorporeal membrane oxygenation and the doctors were pondering the viability of my lungs and kidneys. Doctors, as much as patients, dream of recovery. They want to heal. They want to succeed. According to the Oxford English Dictionary, recovery is "the process of becoming well again after an illness or injury." That definition is close to the etymological sense of the word when it entered the English language in the mid-fourteenth century. Now we use the word in a broader sense to talk about getting back something that has been lost, and thus, we say things like "she recovered her stolen car" or "she already recovered all the money she invested." This shift in meaning is deceitful, however. When we think of lost objects, recovery implies complete restitution: we lose something, but then it returns to our possession. It's gone and then it's back. Not here/now here. But we humans do not recover in this sense from the kinds of loss produced by illness and other forms of trauma. Illness experiences leave marks that reveal the illusory nature of restitution narratives. The use of the active participle, so prevalent among those who struggle with addiction ("I am a recovering X") could apply to many health conditions in which life must be lived one day at a time. We might never regain all that we have lost, a particularly poignant reality for people who suffer from chronic or degenerative diseases. People who have met me in recent years react with a mix of incredulity and elation when they learn that I received a heart transplant five years ago. I don't look any different from most women in their late fifties. I give the appearance of enjoying a full recovery: I work full time, I still practice karate, I travel, I take care of my family. [End Page 61] But I am immunocompromised and, like many others in recovery, at a much higher risk of contracting diseases. My medications have already caused predictable side effects, like carcinomas big enough to require surgical interventions and osteoporosis, which resulted in a fractured vertebra. There are plenty of things that I will never recover. I am thankful that I recovered some of my strength and my muscle tone, after being unable to support my own weight. I can stand up by myself, I can walk, I can exercise some. I am glad I recovered my voice, after having to use an acrylic board and markers to communicate after long periods of intubation, but singing has become harder. I regained several things I now see as great gifts, like the pleasure of taking a shower or sleeping in my own bed. There are, however
不可挽回的玛格丽塔·绍纳(传记)“我们会帮你恢复的,”心脏病专家笑着说,指着贴在我成人心脏外科病房房间墙上的一张照片。那是一张我在空手道学校的地板上和一个伙伴一起摔板的照片。我患上了心脏病小组的一名成员所说的“致命性心律失常”。那时,我的心脏依靠体外膜氧合来维持,医生们也在考虑我的肺和肾的生存能力。医生和病人一样,都梦想着康复。他们想要愈合。他们想要成功。根据《牛津英语词典》的解释,康复是“生病或受伤后恢复健康的过程”。这个定义接近这个词在14世纪中期进入英语时的词源学意义。现在我们在更广泛的意义上使用这个词来谈论找回丢失的东西,因此,我们会说“她找回了她被偷的车”或“她已经找回了她投资的所有钱”。然而,这种意义上的转变具有欺骗性。当我们想到丢失的物品时,恢复意味着完全恢复:我们失去了一些东西,但后来它又回到了我们的拥有。它消失了,然后又回来了。不是在这里/现在在这里。但我们人类并不能从这种意义上从疾病和其他形式的创伤所造成的损失中恢复过来。疾病经历留下的痕迹揭示了康复叙事的虚幻本质。主动分词的使用,在那些与成瘾作斗争的人中非常普遍(“我是一个正在康复的X”),可以适用于许多必须一天一天过下去的健康状况。我们可能永远无法重新获得我们所失去的一切,对于患有慢性或退行性疾病的人来说,这是一个特别痛苦的现实。近年来见过我的人得知我五年前接受了心脏移植手术时,他们的反应既有怀疑,也有欣喜。我看起来和大多数50多岁的女人没有什么不同。我给人一种完全康复的感觉:我全职工作,我还在练习空手道,我旅行,我照顾我的家人。但我的免疫系统有缺陷,而且和许多康复中的人一样,感染疾病的风险要高得多。我的药物治疗已经产生了可预见的副作用,比如癌症大到需要手术干预,骨质疏松症导致椎骨骨折。有很多事情我永远无法恢复。我很感激,在无法支撑自己的体重之后,我恢复了一些力量和肌肉张力。我可以自己站起来,我可以走路,我可以做一些运动。我很高兴我恢复了声音,在长时间插管后不得不使用丙烯酸板和马克笔进行交流,但唱歌变得越来越困难。我重新获得了一些我现在认为是伟大礼物的东西,比如洗澡或睡在自己床上的乐趣。然而,有些东西已经永远消失了,比如疤痕周围皮肤的敏感性,这些疤痕记录了我的手术历史,对我来说,这段历史是无法恢复的,被麻醉和其他失去意识的经历所掩盖。事情已经过去了,从来没有在我的脑海里留下过记忆。我请别人告诉我在某些日子里发生了什么。我在一家医院接上了一台Impella,然后由一辆特殊的救护车送到另一家医院,接上了体外膜氧合机。这些事都给我讲过了。它们可以给我事实,但永远不能给我在自我的黑暗中所经历的经历。西班牙语中表示记忆的一个常见单词是recuerdo,来自拉丁语recordari,意思是回到心脏。从词源学的角度来看,这种诗意的转变对我来说是讽刺的,因为我的初心已经无法恢复,无法修复,永远消失了。我已经是移植后存活的第六年了。平均存活时间在5…
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引用次数: 0
The Case of the Peculiar Story: Medical Investigation and the Detective in Edgar Allan Poe and Marguerite Duras 《离奇案件:埃德加·爱伦·坡与玛格丽特·杜拉斯的医学调查与侦探
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911453
Iro Filippaki, Lakshmi Krishnan
Abstract: In "The Murders in the Rue Morgue" (1841), Poe invents the detective story in English, introducing his gentleman sleuth Auguste Dupin as he solves the locked-room mystery of two women found brutally murdered in a Paris apartment. In L'Amante Anglaise (1967), Duras revisits the detective form, fictionalizing the true 1949 crime of a woman murdering and dismembering her cousin in Viorne, France. These literary detective stories highlight the powerful but unspoken role of affective experience in driving what appears, on the surface, to be a forensic medical or psychological investigation. In both tales, peculiarity is an affective and cognitive force that, contrary to what the majority of affect literature argues, inherently moves toward resolution and closure. Using peculiarity as an analytical concept, we argue that the concealment / discovery binary must acknowledge its affective origins, breaking a barrier between narrative scholarship and medical practice.
摘要:在《莫尔格街谋杀案》(1841)中,爱伦·坡发明了英语侦探小说,他笔下的绅士侦探奥古斯特·杜邦揭开了巴黎一间公寓里两名女子被残忍杀害的密室之谜。在1967年出版的《英国人》(L’amante Anglaise)中,杜拉斯再次以侦探的形式,虚构了1949年发生在法国维奥纳(Viorne)的一桩真实案件:一名妇女谋杀并肢解了她的堂兄。这些文学侦探故事强调了情感体验在推动表面上看起来像是法医或心理调查的过程中所起的强大但不言而喻的作用。在这两个故事中,独特性是一种情感和认知的力量,与大多数情感文学所主张的相反,它本质上是走向解决和结束的。以特殊性为分析概念,我们认为隐藏/发现二元必须承认其情感根源,打破叙事学术与医学实践之间的障碍。
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引用次数: 0
Better Medicine: Shared Suffering and Chronic Vulnerability in Brian Teare's The Empty Form Goes All the Way to Heaven 更好的医学:共同的痛苦和长期的脆弱在布莱恩·蒂尔的《空虚的形式通向天堂》中
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911448
Tana Jean Welch
Abstract: A posthumanist understanding of the body does not view "illness" and "health" as properties of the individual body, but as emergent features of the relationships between bodies. As such, a relational view of health opens up avenues for the betterment of both human bodies and their social and physical environments. Drawing on posthumanism and the ethics of vulnerability, this article demonstrates how Brian Teare's The Empty Form Goes All the Way to Heaven (2015) provides a different way of thinking (and doing) illness, death, and vulnerability. With his acceptance and promotion of the body's dynamic materiality and chronic vulnerability, Teare advances a posthuman ethics based on our shared embodied condition.
摘要:后人类主义对身体的理解不认为“疾病”和“健康”是个体身体的属性,而是身体之间关系的突现特征。因此,健康的关系观为改善人体及其社会和物质环境开辟了途径。本文借鉴了后人文主义和脆弱性伦理,展示了布莱恩·蒂尔的《空的形式通往天堂》(2015)如何提供了一种思考(和处理)疾病、死亡和脆弱性的不同方式。通过他对身体的动态物质性和慢性脆弱性的接受和促进,蒂尔提出了一种基于我们共同体现条件的后人类伦理。
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引用次数: 0
Foreword to Front Matter: Recovery 《前沿问题:恢复》前言
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911438
Michael Blackie
Foreword to Front Matter:Recovery Michael Blackie We all know something about recovery. The return of a lost object, like health or dignity, maybe a cherished memento, or a talisman from another time. It is a narrative driven experience, propelled by expectation, a story we tell to make sense of what can be recovered or to put into perspective that which remains beyond reach. In either case, getting there or not is the story. In this time of Covid, many of us can now describe recovering from an infection, an idea that seemed frighteningly uncertain before vaccines became available. And for too many, recovery doesn't come, like for my dear mentor Carol Donley, who died this past April from complications of Covid, or for those enduring symptoms of long Covid, like the author whose relapse prevented her from completing her contribution to this issue's Front Matter. There are even grimmer realities, like when a search-and-rescue mission becomes a recovery operation. Yes, we all know something about recovery and we're drawn to stories about someone, even a stranger, who has triumphed over illness, adversity, or injustice. The six contributions that follow tell stories about recovery or challenge the narrative conventions upon which they are told. Here is mine. Each spring I teach a session on close reading to nursing students in a seminar on hospice care. The literary text I assign is Sherman Alexie's "Blankets," told by a narrator who is the son of an elderly Indian man who has just undergone a surgical amputation of his right foot and several toes from his left, the consequences of alcoholism and diabetes.1 Most of the story takes place in what the son calls a "recovery hallway" in a busy urban hospital in Washington state (44). The story's rich descriptions and metaphors reward close reading, but it's an odd story for a class on hospice care because no one in it dies or enters hospice. The focus is, rather, on becoming a caregiver. The son's growing awareness of what his father's recovery will demand [End Page 5] from him as his caretaker illuminates the dynamics of informal care- giving for these future nurses. The recovery ahead promises to be daunting. The son knows his father will continue to drink once he is discharged, that he will likely put his disfigurement to work in the local bar, winning bets doing wheelies in his new wheelchair. As the son begins to see traditional roles reversing, with the adult child now caring for the ill parent (the "circle of life" he calls "poetic bullshit"), students inevitably begin sharing their own experiences with caregiving (47). They will differ in the details, but where we get to is mostly the same: how the idea of recovery can become oppressive when it seems always out of reach, when one realizes recovery's narrative expectations will go unmet. It is at this point in the discussion when I draw students back to the text, back to the "recovery hallway" specifically, to highlight its liminality and ask them
《前沿问题:恢复》的前言迈克尔·布莱基我们都知道一些关于恢复的事情。失去的东西的回归,比如健康或尊严,也许是珍贵的纪念品,或者是来自另一个时代的护身符。这是一种叙事驱动的体验,由期望推动,我们讲述的故事是为了让人们明白什么是可以恢复的,什么是无法企及的。无论哪种情况,能否达到目标都是一个故事。在疫情期间,我们中的许多人现在可以描述从感染中恢复的情况,在疫苗问世之前,这个想法似乎非常不确定。对于太多人来说,康复并没有到来,就像我亲爱的导师卡罗尔·唐利,她在今年4月死于新冠肺炎的并发症,或者对于那些长期患有新冠肺炎的人来说,就像作者的复发使她无法完成对本期《前沿问题》的贡献。甚至还有更严峻的现实,比如搜救任务变成了恢复行动。是的,我们都知道一些关于康复的事情,我们被一些人的故事所吸引,即使是陌生人,他们战胜了疾病、逆境或不公。接下来的六篇文章讲述了关于康复的故事,或者挑战了讲述这些故事的叙事惯例。这是我的。每年春天,我都会在临终关怀研讨会上给护理专业的学生讲授一门关于细读的课程。我指定的文学文本是谢尔曼·阿列克谢(Sherman Alexie)的《毯子》(blanket),叙述者是一位印度老人的儿子,由于酗酒和糖尿病的后果,这位老人刚刚接受了右脚和左脚几个脚趾的截肢手术故事的大部分发生在儿子所说的华盛顿州一家繁忙的城市医院的“康复走廊”(44)。这个故事丰富的描述和隐喻值得仔细阅读,但对于一个关于临终关怀的课程来说,这是一个奇怪的故事,因为里面没有人死亡或进入临终关怀。更确切地说,重点是成为一个照顾者。作为父亲的看护人,儿子越来越意识到父亲的康复对他的要求[End Page 5],这说明了这些未来护士非正式照顾的动态。未来的复苏前景不容乐观。儿子知道他的父亲出院后还会继续酗酒,他可能会把他的毁容放在当地的酒吧里工作,在他的新轮椅上做轮滑赢得赌注。当儿子开始看到传统角色的转变,成年的孩子现在要照顾生病的父母(他称之为“诗意的胡扯”的“生命循环”),学生们不可避免地开始分享他们自己的照顾经验。它们在细节上有所不同,但我们得出的结论大多是相同的:当复苏似乎总是遥不可及时,当人们意识到复苏的叙事期望将无法实现时,复苏的想法是如何变得压抑的。正是在讨论的这一点上,我把学生们拉回到文本中,特别是回到“康复走廊”,以强调它的局限性,并要求他们考虑在这样的空间里发生了多少护理。叙述者的父亲,他在走廊的位置让他“没有隐私,甚至没有薄窗帘”,所以“他几十年的健康状况不佳和糟糕的决定被照亮了”(45),并不孤单。叙述者就在他身边,同样暴露在其他人的评判之下,这些人“认为医生应该停止从自我毁灭的冲动中拯救人们”(46)。他向我们,他的读者承认,他“不能反对”这样的判断,但他坚持认为,他也应该能够“要求最基本的舒适”,尽管他的父亲吸毒成瘾,健康状况不佳(46)。任何因健康、虚弱或丧失独立性而患病的人都会经历和分享这种暴露。对毒瘾的深入了解,它是如何让一个家庭既和睦又分离,这意味着我对判断力有所了解——以及它是如何巧妙地与希望联系在一起的。在一个复苏的故事中,希望是多么令人陶醉;如何……
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引用次数: 0
Becoming-Amazon: Femininity, Embodiment, and Sexuality in a Photographic and Digital Breast Cancer Project 成为亚马逊:女性气质,体现和性在摄影和数字乳腺癌项目
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911446
Katja Herges
Abstract: In recent decades, digital and photographic life narratives by women living with breast cancer and mastectomy have gained public visibility. This article examines how a documentary and fashion photography project in contemporary Berlin rethinks normative concepts of femininity, embodiment, and sexuality through the performance of the breast cancer patient as Amazon warrior. Based on feminist theory, disability studies, media studies, and in particular Gilles Deleuze's concept of becoming , I coin the term "becoming-Amazon" for the process of relational subjectivity formation that the project opens up. Uta Melle's project shifts notions of post-mastectomy bodies as unfeminine, incomplete, or asexual and envisions and celebrates a multiplicity of relational femininities, embodiments, and erotic zones with difference. By combining digital cancer activism and an aesthetics and politics of visibility, difference, and intercorporeality, Melle's project intervenes in contemporary cancer discourse and unsettles what has been considered as redemptive cancer culture.
摘要:近几十年来,乳腺癌和乳房切除术患者的数字和摄影生活叙事已经得到了公众的关注。这篇文章探讨了当代柏林的一个纪录片和时尚摄影项目是如何通过扮演亚马逊战士的乳腺癌患者来重新思考女性气质、体现和性的规范概念的。基于女性主义理论、残疾研究、媒体研究,尤其是吉尔·德勒兹的“成为”概念,我创造了“成为-亚马逊”这个词来描述这个项目所开启的关系主体性形成过程。Uta Melle的项目将乳房切除术后的身体转变为不女性化,不完整或无性的概念,并设想和庆祝关系女性的多样性,体现和不同的色情区域。通过将数字癌症行动主义与可见性、差异和身体间性的美学和政治相结合,Melle的项目介入了当代癌症话语,并扰乱了被认为是救赎的癌症文化。
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引用次数: 0
Are We Ever Really Recovered? 我们真的恢复了吗?
4区 文学 0 LITERATURE Pub Date : 2023-03-01 DOI: 10.1353/lm.2023.a911443
Gianna Paniagua
Are We Ever Really Recovered? Gianna Paniagua (bio) [End Page 51] Click for larger view View full resolution [End Page 52] Click for larger view View full resolution [End Page 53] Click for larger view View full resolution [End Page 54] Click for larger view View full resolution [End Page 55] Click for larger view View full resolution [End Page 56] Click for larger view View full resolution [End Page 57] Click for larger view View full resolution [End Page 58] Click for larger view View full resolution [End Page 59] Click for larger view View full resolution [End Page 60] Gianna Paniagua Gianna Paniagua is a two-time heart transplant recipient of 30+ years, papercutting sculptor, and graphic medicine artist who is from and based in NYC. She utilizes her lifetime of experiences in medicine to create artwork about the dualities of the human body, as well as comics that ask questions about the chronic illness patient experience. The core of her practice is trying to find a visual vocabulary when there is loss of language due to medical trauma. Her lifelong goal is to find solutions to problems that exist in the field of transplantation for young adult patients. Copyright © 2023 Johns Hopkins University Press
我们真的恢复了吗?Gianna帕(生物)(51结束页)点击大图查看完整的决议(结束52页)点击大图查看完整的决议(结束页53)点击大图查看完整的决议(结束页54)点击大图查看完整的决议(结束页55)点击大图查看完整的决议(结束56页)点击大图查看完整的决议(结束页57)点击大图查看完整的决议(结束页58)点击大图查看完整的决议(结束页59)点击Gianna Paniagua是一位30多年的两次心脏移植接受者,剪纸雕塑家,以及来自纽约的图形医学艺术家。她利用自己一生的医学经验创作了关于人体二元性的艺术作品,以及关于慢性疾病患者经历的漫画。她的实践的核心是试图找到一种视觉词汇,当有语言丧失由于医疗创伤。她的终身目标是为年轻成人患者寻找移植领域存在的问题的解决方案。版权所有©2023约翰霍普金斯大学出版社
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引用次数: 0
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