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“Our Blood Itself Is Disabled!”: Haemoglobinopathy, Certificate Anxiety, and Contested Constitutionalism in Disability Legislation in India “我们的血液本身被破坏了!”血红蛋白病、证书焦虑和印度残疾立法中有争议的宪政
Pub Date : 2022-08-04 DOI: 10.17157/mat.9.3.5770
Sanghamitra Das
On 28 December 2016, the Government of India passed a national disability act which for the first time recognised genetic blood disorders—thalassemia, sickle cell disease, and haemophilia—as disabilities, entitling affected individuals to affirmative action. While it was welcomed by patient communities, this policy decision also sowed seeds of collective anxieties regarding the assessment of the required degree of disability in affected individuals. Thirteen months later, a set of national guidelines were published that dictated the procedures for determining whether a patient meets this ‘benchmark disability’ standard, thus materialising the collective anxieties of blood disorder patient communities. Utilising ‘patchwork ethnography’ as a methodology, in this article I focus on haemoglobinopathy (thalassemia and sickle cell disease) patient communities in India to investigate the ‘certificate anxieties’ that stem from the difficulties of certifying disability percentage for those with genetic blood disorders. These anxieties arise from the tensions between a (bio)constitutional reordering of disability categories and the contestations of these categories, which are rooted in articulations of citizenship rights. I argue that such contested constitutionalisms give rise to productive tensions in State–(disabled) citizen relations that have the potential to realign institutions with citizens’ accounts of social justice.
2016年12月28日,印度政府通过了一项国家残疾法,首次承认遗传性血液病——地中海贫血、镰状细胞病和血友病——为残疾,受影响的个人有权享受平权行动。虽然受到患者社区的欢迎,但这一政策决定也播下了集体焦虑的种子,即对受影响个人所需的残疾程度进行评估。13个月后,公布了一套国家指南,规定了确定患者是否符合这一“基准残疾”标准的程序,从而使血液病患者群体的集体焦虑成为现实。在这篇文章中,我利用“拼凑人种志”作为一种方法,重点关注印度的血红蛋白病(地中海贫血和镰状细胞病)患者社区,以调查“证明焦虑”,这种焦虑源于对遗传血液疾病患者的残疾百分比进行证明的困难。这些焦虑源于(生物)宪法对残疾类别的重新排序与这些类别的争论之间的紧张关系,这些类别根植于公民权的表达。我认为,这种有争议的宪政在国家与(残疾的)公民关系中产生了富有成效的紧张关系,这种关系有可能根据公民对社会正义的描述重新调整制度。
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引用次数: 0
‘Medicine in Name Only’: Mistrust and COVID-19 Among the Crowded Rohingya Refugee Camps in Bangladesh “名不虚传的医学”:孟加拉国拥挤的罗兴亚难民营中的不信任和COVID-19
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5424
Sadaf Islam, N. Mookherjee, Naveeda Khan
This article is an anthropological examination of the health-seeking behaviours of Rohingya refugees living in crowded camps in Bangladesh, in the context of the COVID-19 pandemic. One international organisation providing medical care in the Kutupalong camp has found non-cooperation among the residents regarding the health facilities on offer to them. This ethnography highlights the Rohingya refugees’ active ‘mistrust’ (Carey 2017) of these medical services. We argue that these prevalent forms of mistrust provide a lens through which their individual life trajectories and politics can be understood in the context of the history of their systemic oppression by the Myanmar government. We reflect on the precarity and vulnerability of the Rohingya refugees, within which they identify mistrust as a source of resistance and protection. The mistrust of the Rohingya communities also highlights their attempts to communicate with a global public (Canetti 1960) and exhibits the ‘crowd politics’ (Chowdhury 2019) within a continued statelessness which is engendered by the Bangladeshi and Myanmar governments. This article makes an original contribution to the discussion of trust, mistrust, and rumour in society, identifying ‘the crowd’ as a site of resistance, and providing an account of the distinctive experience of the Rohingyas as refugees, and their health-seeking behaviour in the camp.
本文从人类学角度考察了在2019冠状病毒病大流行背景下,居住在孟加拉国拥挤难民营的罗兴亚难民的求医行为。在库图帕朗难民营提供医疗服务的一个国际组织发现,居民对提供给他们的医疗设施不合作。这种民族志突出了罗兴亚难民对这些医疗服务的积极“不信任”(Carey 2017)。我们认为,这些普遍存在的不信任形式提供了一个视角,通过这个视角,可以在缅甸政府系统性压迫的历史背景下理解他们的个人生活轨迹和政治。我们反思罗兴亚难民的不稳定性和脆弱性,在这种情况下,他们将不信任视为抵抗和保护的根源。对罗兴亚社区的不信任也凸显了他们试图与全球公众沟通(Canetti 1960),并在孟加拉国和缅甸政府造成的持续无国籍状态下展示了“群体政治”(Chowdhury 2019)。本文对社会中的信任、不信任和谣言的讨论做出了原创贡献,将“人群”确定为抵抗的场所,并提供了罗兴亚人作为难民的独特经历,以及他们在难民营中寻求健康的行为。
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引用次数: 2
Social Distancing, Interaction, and (Un)crowded Public Space in Mass Transit in Ho Chi Minh City, Vietnam 越南胡志明市公共交通中的社会距离、互动和(非)拥挤的公共空间
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5375
Catherine Earl
Vietnam’s national response to the COVID-19 pandemic is informed by its past experiences of fighting endemic disease. This response involves an emerging biosocial paradigm of long-term adaptation to living with the co-presence of viral infections. Moving beyond traditional anthropological work, this article issues an invitation to (re)think crowds and COVID-19. I offer a path forward by engaging in an interdisciplinary dialogue, drawing inspiration from a wide range of sources to understand this unfolding problematic. Through the lens of its public transport service Saigon Bus and environmental protests, I examine how the 2020–21 ‘pandemic season’ (mùa dịch) in Ho Chi Minh City, Vietnam’s largest city, has transformed consciousness about crowds, ways of being in (un)crowded public spaces, and the regulation of networked public space. In doing so, this article explores existing and emerging shifts in policymaking and transformations of urban Vietnamese social relations, in the context of the emerging biosocial paradigm. The article contributes to medical anthropology by analysing the impact of pandemic prevention policies on the transformation of crowds—from being viewed as anti-state assemblies requiring social control into a form of pro-state participatory citizenship, exemplified by public engagement with networked activist communities in a ‘more-than-human’ world.
越南过去抗击地方病的经验为其应对新冠肺炎疫情提供了信息。这种反应涉及一种新兴的生物社会范式,即长期适应与病毒感染共存的生活。这篇文章超越了传统的人类学工作,发出了重新思考人群和新冠肺炎的邀请。我通过参与跨学科对话提供了一条前进的道路,从广泛的来源中汲取灵感来理解这一正在发展的问题。通过其公共交通服务西贡巴士和环境抗议的镜头,我审视了2020-2021年的“疫情季节”(múa dịch)已经改变了人们对人群的意识、在(非)拥挤的公共空间中的生活方式以及对网络公共空间的监管。在这样做的过程中,本文探讨了在新兴的生物社会范式的背景下,越南城市社会关系的政策制定和转型中现有和新兴的转变。这篇文章通过分析疫情预防政策对人群转变的影响,为医学人类学做出了贡献——从被视为需要社会控制的反国家集会转变为一种亲国家的参与公民身份,在一个“超越人类”的世界中,公众与网络活动家社区的接触就是例证。
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引用次数: 0
Assisted Reproductive Technologies: A Grey Zone in the Zika Epidemic in Brazil? 辅助生殖技术:巴西寨卡疫情的灰色地带?
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5141
H. Prado
In this article, I address an issue that emerged during my ethnographic fieldwork in Brazil in 2018, which received little attention during the Zika virus outbreak that took place in the country during 2015–17. My fieldwork revealed that, interestingly, despite the epidemic and its associated risk of birth defects, some couples who were attending a fertility clinic (most of whom came from a middle- or upper-class background, with access to private health care) chose to take the risk of a pregnancy instead of delaying their plans. I argue that this case study of assisted reproductive technology (ART) is a ‘grey zone’ whose investigation aids understanding of how the Zika epidemic was managed in Brazil. By looking at the potentiality of pregnancies and prospective babies for (infertile) couples, we can analyse how fertility clinics influenced the ability of couples to engage in ART during the epidemic and explore which kinds of reproductive services were offered to patients during this time. More broadly, this case study permits the examination of how the specific case of ART sheds light on the issue of risk/reward in wider reproductive decision-making during the epidemic. In many ways, I conclude, one can say that the Zika virus epidemic came to challenge both the timing of reproduction and the choice to become pregnant.
在这篇文章中,我谈到了2018年在巴西进行民族志实地调查时出现的一个问题,该问题在2015-17年寨卡病毒爆发期间几乎没有受到关注。我的实地调查显示,有趣的是,尽管疫情及其相关的出生缺陷风险,但一些在生育诊所就诊的夫妇(其中大多数来自中产阶级或上层阶级背景,可以获得私人医疗保健)选择冒怀孕的风险,而不是推迟他们的计划。我认为,这项辅助生殖技术(ART)的案例研究是一个“灰色地带”,其调查有助于了解寨卡病毒在巴西是如何控制的。通过观察(不孕)夫妇怀孕和未来婴儿的潜力,我们可以分析生育诊所如何影响夫妇在疫情期间进行抗逆转录病毒治疗的能力,并探索在此期间为患者提供了哪些生殖服务。更广泛地说,这项案例研究可以检验ART的具体病例如何揭示疫情期间更广泛的生殖决策中的风险/回报问题。我的结论是,在很多方面,人们可以说寨卡病毒的流行对繁殖的时机和怀孕的选择都提出了挑战。
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引用次数: 0
The Tyranny of Numbers: How e-Health Record Transparency Affects Patients’ Health Perceptions and Conversations with Physicians 数字的暴政:电子健康记录透明度如何影响患者的健康感知和与医生的对话
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5529
B. Kristensen, J. Brodersen, A. B. R. Joensson
All Danish adults have access to their electronic medical records on the e-health platform Sundhed.dk, which is intended as a means to empower patients. But what happens when patients see their paraclinical test results presented as numbers which are flagged as either ‘normal’ or ‘abnormal’? Based on fieldwork in general practices and consultations, and on observations of individuals living with chronic illnesses, we investigated how patients and physicians interpret and interact with such numerical values, creating, as we argue through the words of Gregory Bateson, ‘epistemological errors’. We show how health record transparency blurs the patient’s senses and understanding and makes it harder for them to interpret their state of health and to trust the clinical judgement of health professionals. We argue that the immediate access to test results triggers a runaway process in which numerical values (be they normal or abnormal in comparison with a standard point of reference) transform into a threat to life itself. As such, our ethnography underlines the intricate contradiction between the trust placed in biomedical sciences and the uncertainty involved in testing, diagnosing, and treating. Patients’ access to all test results leads to a quest for certainty—one never fully obtainable, which thus instead mobilises new uncertainties.
所有丹麦成年人都可以在电子保健平台Sundhed上查阅他们的电子医疗记录。Dk,这是一种赋予患者权力的手段。但是,当患者看到他们的临床测试结果被标记为“正常”或“异常”时,会发生什么呢?基于对一般实践和咨询的实地调查,以及对慢性疾病患者的观察,我们调查了患者和医生如何解释和互动这些数值,正如我们通过格雷戈里·贝特森(Gregory Bateson)所说的那样,创造了“认识论错误”。我们展示了健康记录的透明度如何模糊了患者的感觉和理解,使他们更难解释自己的健康状况,并相信卫生专业人员的临床判断。我们认为,对测试结果的直接访问触发了一个失控的过程,在这个过程中,数值(与标准参考点相比,无论它们是正常的还是不正常的)转变为对生命本身的威胁。因此,我们的人种志强调了对生物医学科学的信任与测试、诊断和治疗中涉及的不确定性之间复杂的矛盾。患者对所有检测结果的接触导致了对确定性的追求——一种永远无法完全获得的确定性,从而引发了新的不确定性。
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引用次数: 0
Urgent Priorities, Slow Scholarship 当务之急,缓慢的奖学金
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.7138
Mat Editorial Collective
Editorial to the April issue of 2022.
2022年4月号的社论。
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引用次数: 0
The Innovation Imperative in Global Health: Gendered Futurity in the Sayana® Press 全球健康创新势在必行:Sayana®出版社的性别未来
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5765
M. MacDonald, Ellen E. Foley
In this Position Piece, we explore the hegemony of innovation and the construction of gendered futures in global health through the Sayana® Press, a device that delivers a version of the contraceptive drug commonly known as Depo-Provera. The device has generated tremendous enthusiasm amongst global family planning advocates for its effectiveness and ease of use, including administration by community level providers and self-injection. Claims about its potential are compelling: advocates hope it will dramatically increase access to contraceptives, and thereby unlock the social and material emancipatory promise of family planning. We offer preliminary observations about Sayana Press as an ethnographic and discursive object and further the scholarly conversation on humanitarian design by considering the gendered dimensions of global health technologies. The advent of Sayana Press reflects several significant trends in global health including the intensification of the innovation imperative and the bypassing of investments in infrastructure—both bolstered by the recent rise of the ‘self-care agenda’. Further, we suggest that global health technologies are also techniques in the Foucauldian sense—scripting new subjectivities and bodily norms towards gendered futurities. Finally, we note the dual role of the state in sexual and reproductive health as both source and object of reproductive governance.
在这篇文章中,我们通过Sayana®Press探索了创新的霸权和全球健康中性别未来的构建,Sayana™Press是一种提供避孕药物的设备,通常被称为Depo Provera。该设备的有效性和易用性在全球计划生育倡导者中引起了极大的热情,包括社区级提供者的管理和自我注射。关于其潜力的说法令人信服:倡导者希望它将大大增加获得避孕药具的机会,从而释放计划生育的社会和物质解放承诺。我们对Sayana Press作为一个民族志和话语对象进行了初步观察,并通过考虑全球卫生技术的性别维度,进一步推动了关于人道主义设计的学术对话。Sayana Press的出现反映了全球卫生的几个重大趋势,包括加强创新的必要性和绕过基础设施投资——这两个趋势都受到了最近“自我保健议程”兴起的支持。此外,我们认为全球卫生技术也是傅科意义上的技术——为性别化的未来编写新的主观和身体规范。最后,我们注意到国家在性健康和生殖健康方面的双重作用,既是生殖治理的来源,也是生殖治理的对象。
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引用次数: 0
​Disease X and Africa: How a Scientific Metaphor Entered Popular Imaginaries of the Online Public During the COVID-19 Pandemic 疾病X与非洲:在COVID-19大流行期间,科学隐喻如何进入在线公众的流行想象
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5611
Kelley Sams, C. Grant, A. Desclaux, K. Sow
In 2018, the World Health Organization (WHO) announced the addition of Disease X, a hypothetical infectious threat, to its blueprint list of priority diseases. In the construction of discourse that circulated following this announcement, conceptions of Disease X intersected with representations of Africa. In our article, we share a broad strokes analysis of internet narratives about Disease X and Africa in the six months before the onset of the COVID-19 pandemic (July–December 2019) and during its first six months (January–June 2020). Our analysis focuses on how the scientific concept of Disease X was applied by ‘non-experts’ to make meaning from risk, uncertainty, and response. These non-experts drew in parallel upon more general representations of power, fear, and danger. This research is particularly relevant at the time of writing, as online narratives about COVID-19 vaccination are shaping vaccine anxiety throughout the world by drawing upon similar conceptions of agency and inequality. Because Disease X in Africa still looms as a perceived future threat, considering the narratives presented in this paper can provide insight into how people create meaning when faced with a scientific concept, a global health crisis, and the idea that there are other crises yet to come.  
2018年,世界卫生组织(世界卫生组织)宣布将X病(一种假定的传染病威胁)列入其优先疾病蓝图名单。在这一宣布后流传的话语结构中,X病的概念与非洲的表现相交。在我们的文章中,我们分享了新冠肺炎大流行开始前六个月(2019年7月至12月)和前六个月中(2020年1月至6月)关于X病和非洲的互联网叙事的大致分析。我们的分析重点是“非专家”如何应用疾病X的科学概念来从风险、不确定性和反应中获得意义。这些非专家同时借鉴了权力、恐惧和危险的更普遍的表现。这项研究在撰写本文时尤其重要,因为关于新冠肺炎疫苗接种的在线叙事正通过借鉴类似的机构和不平等概念,在世界各地塑造疫苗焦虑。由于非洲的X病仍然是一种被视为未来威胁的疾病,考虑到本文中的叙述,可以深入了解人们在面临科学概念、全球健康危机以及其他危机即将到来的想法时是如何创造意义的。
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引用次数: 3
Harm Reduction⁠— And What Keeps Us From Embracing It Fully 减少伤害——以及是什么阻止我们完全接受它
Pub Date : 2022-04-28 DOI: 10.1163/2210-7975_hrd-9709-2015030
Eana Meng, J. Lenhard
In this Review essay, we examine some of the latest and needed scholarship on harm reduction: Travis Lupick’s Fighting for Space: How a Group of Drug Users Transformed One City’s Struggle with Addiction (2018); Jarrett Zigon’s A War on People: Drug User Politics and a New Ethics of Community (2019); Kimberly Sue’s Getting Wrecked: Women, Incarceration, and the American Opioid Crisis (2019); and Nancy Campbell’s OD: Naloxone and the Politics of Overdose (2020). Our authors present us with intimate windows into a diverse array of geographies, peoples, and technologies—from women’s jails, prisons, and community treatment programmes in Massachusetts to Vancouver’s downtown; from Copenhagen’s safe injection sites to prisons in Scotland. While varied in methods and approaches, these works unequivocally push for alternative imaginings to what one of Campbell’s protagonists dubs the ‘North American disaster’. Harm reduction is front and centre to these authors’ envisioning of a kinder, more loving, and more accepting future. Embracing harm reduction both requires and initiates a radical rethinking of how drug use is viewed, and our authors have given us crucial insight and analyses into how such reorientations are possible. We encourage continued scholarship on this topic, especially on non-Western options. 
在这篇评论文章中,我们研究了一些关于减少伤害的最新和需要的奖学金:特拉维斯·卢皮克的《为空间而战:一群吸毒者如何改变一个城市与成瘾的斗争》(2018);贾勒特·西贡(Jarrett Zigon)的《对人民的战争:吸毒者政治和新的社区伦理》(2019);金伯利·苏的《崩溃:女性、监禁和美国阿片类药物危机》(2019);南希·坎贝尔的《吸毒过量:纳洛酮和吸毒过量的政治》(2020年)。我们的作者向我们展示了一扇亲密的窗户,让我们看到不同的地域、民族和技术——从马萨诸塞州的女子监狱、监狱和社区治疗项目到温哥华市中心;从哥本哈根的安全注射场所到苏格兰的监狱。虽然方法和方法各不相同,但这些作品毫不含糊地推动了坎贝尔的主人公之一所称的“北美灾难”的另类想象。减少伤害是这些作者设想一个更善良、更有爱心、更能接受的未来的前沿和中心。拥抱减少伤害既需要也引发了对如何看待毒品使用的彻底反思,我们的作者为我们提供了重要的见解和分析,说明这种重新定位是如何可能的。我们鼓励继续研究这一主题,特别是非西方的选择。
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引用次数: 1
Becoming a Mother During COVID-19: Adjustments in Performing Motherhood 新冠肺炎期间成为母亲:履行母亲职责的调整
Pub Date : 2022-04-28 DOI: 10.17157/mat.9.2.5310
Clémence Jullien, R. Jeffery
Based on online semi-structured interviews with middle-class women who were pregnant or had recently given birth in Western Europe (France, Spain, the United Kingdom, and Switzerland), this study analyses how motherhood has been experienced and performed during the COVID-19 pandemic. The article reflects on the specific new risk assessments and responsibilities that emerged during the pandemic by showing women’s coping strategies concerning lockdowns and other public health measures. Using a COVID-19 lens also allows a broader analysis of middle-class families’ concerns about performing ‘good motherhood’. By highlighting the discrepancies between women’s expected and actual experiences, the prescriptive aspects of pregnancy, delivery, and the postpartum phase are revealed and analysed, prompting us to consider parenting as a form of doing and proving. By underlining the importance attached to the expectant mother’s wellbeing, the partner’s involvement, the support of relatives, and the future socialisation of the baby, we argue that women face a myriad of imperatives to ensure a meaningful experience of motherhood.
本研究基于对西欧(法国、西班牙、英国和瑞士)怀孕或最近分娩的中产阶级妇女的在线半结构化访谈,分析了在COVID-19大流行期间母亲的经历和表现。这篇文章通过展示妇女在封锁和其他公共卫生措施方面的应对策略,反映了大流行期间出现的具体的新风险评估和责任。使用COVID-19镜片还可以更广泛地分析中产阶级家庭对表现“好母亲”的担忧。通过强调女性期望和实际经历之间的差异,揭示和分析了怀孕、分娩和产后阶段的规范方面,促使我们将育儿视为一种实践和证明的形式。通过强调准妈妈的健康、伴侣的参与、亲戚的支持和婴儿未来的社会化的重要性,我们认为女性面临着无数的必要条件,以确保有意义的母亲体验。
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引用次数: 0
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