Disabling Discourses and Down's Syndrome: A Critical Analysis of the Representations of Down's Syndrome within Documentary

禁用话语和唐氏综合症：对纪录片中唐氏综合症表现的批判性分析

• 批准号: 2277633
• 金额: --
• 依托单位: University of Leeds
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2019
• 资助国家: 英国
• 起止时间: 2019 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2277633
• 关键词: Disabling; Discourses; Down; Syndrome; Critical

This project investigates the representation of people with Down's syndrome in documentary films and television from the 1990s to the present within a largely Anglophone context, focusing on texts from Europe, the Americas and Australia, with a view to explore the role and significance of these cultural representations to public debate, the formation of social attitudes and the personal experiences of people living with Down's syndrome. It also considers the relationship between these cultural texts and the formation of policy, information provision and practice in health, education and social care contexts. This research takes place at a critical moment for the Down's syndrome community. The development of less invasive and safer pre-natal testing including the blood-screen NIPT due to be rolled out by the NHS this year means that fewer and fewer babies with Down's syndrome are being born. In this sense, people with Down's syndrome face increasing social and cultural marginalisation as a consequence of what some activist groups, such as Saving Downs, describe as eugenic policies. Given that the decision to terminate a pregnancy based on the results of genetic screening is a choice in the United Kingdom (excluding Northern Ireland), the significance of societal attitudes towards and beliefs about Down's syndrome and learning disability cannot be overstated. The factors that influence a parent's decision to undergo prenatal tests and terminate foetuses that have Down's syndrome in 90% of cases (Gee (2016), have been widely researched (Huang et al, 2015; Reid et al, 2009; Bryant et al, 2006). However, such research rarely stems from a cultural or disability studies perspective and cultural representations of people with Down's syndrome are not typically recognised as one of the determining factors in the decision-making process. This research proceeds from the claim that cultural texts mediate and shape ideas, attitudes and affective responses to particular conditions (Sontag, 1991) and, therefore, that these texts demand investigation if we are fully to understand the choices people make. Like all media, documentaries have the power to shape citizen attitudes and responses towards not only people with Down's syndrome, but the very concept of pre-natal testing and selective abortion. Ethical debates and societal responses can be influenced by media and therefore can have a direct impact on the human rights afforded to people with Down's syndrome. The project focuses on documentary films because these are often looked upon (by audiences and filmmakers alike) as an authoritative source of knowledge, or purveyors of "truth" or "actuality" despite the fact that they are just as constructed as fictional texts (Ellis and McLane, 2006; Nichols, 2001; Burke, 2012). In so doing, the project draws upon the substantial and growing body of scholarly literature on literary and cultural representations of disability (Davis, 1995; 2013, Garland-Thomson, 1996; 1997; 2009, Quayson, 2007, Murray, 2008, Hall, 2016 and Bolt, 2014), and sets out to contribute to this body of work through its focus on Down's syndrome, an impairment category that has received relatively scant attention. Notions of ableism (discrimination in favour of able-bodied people) and disablism (the oppressive societal practices and structures that result in the exclusion, eradication or invalidation of non-normative bodies, minds and communities (Goodley, 2014) will be explored as part of this project and will play an integral role in the analysis of discourse and narrative. The project also draws upon scholarship in the critical medical humanities in order to provide a sustained analysis of how these cultural representations influence contemporary medical practice, government policies and legislation, as well as people with Down's syndrome sense of self in an essentially inhospitable culture. Research Questions In light of current bioethical debates surrounding prenatal screen

该项目调查了 20 世纪 90 年代至今在以英语为主的纪录片和电视中对唐氏综合症患者的表征，重点关注来自欧洲、美洲和澳大利亚的文本，旨在探讨这些文化表征对公众辩论、社会态度的形成以及唐氏综合症患者的个人经历的作用和意义。它还考虑了这些文化文本与健康、教育和社会关怀领域的政策、信息提供和实践之间的关系。这项研究是在唐氏综合症社区的关键时刻进行的。随着 NHS 今年推出的侵入性更小、更安全的产前检测（包括血筛 NIPT）的发展，意味着患有唐氏综合症的婴儿越来越少。从这个意义上说，唐氏综合症患者面临着日益严重的社会和文化边缘化，这是一些激进团体（例如“储蓄唐斯”）所描述的优生政策的结果。鉴于在英国（不包括北爱尔兰）根据基因筛查结果决定终止妊娠，社会对唐氏综合症和学习障碍的态度和信念的重要性怎么强调也不为过。在 90% 的病例中，影响父母决定接受产前检查并终止患有唐氏综合症胎儿的因素（Gee (2016)）已得到广泛研究（Huang 等人，2015；Reid 等人，2009；Bryant 等人，2006）。然而，此类研究很少源于文化或残疾研究的角度，并且唐氏综合症患者的文化表征通常不被认为是一种文化表征。 决策过程中的决定因素。这项研究的出发点是，文化文本可以调节和塑造思想、态度和对特定条件的情感反应（Sontag，1991），因此，如果我们要充分理解人们所做的选择，就需要对这些文本进行调查。与所有媒体一样，纪录片不仅有能力塑造公民对唐氏综合症患者的态度和反应，还可以塑造产前检测和产前检查的概念。 选择性堕胎。道德辩论和社会反应可能会受到媒体的影响，因此可能对唐氏综合症患者的人权产生直接影响。该项目重点关注纪录片，因为它们经常被（观众和电影制片人等）视为权威的知识来源，或“真理”或“现实”的传播者，尽管事实上它们与虚构文本一样构造（埃利斯和麦克莱恩， 2006年；尼科尔斯，2001；伯克，2012）。在此过程中，该项目借鉴了关于残疾的文学和文化表征的大量且不断增长的学术文献（Davis，1995；2013；Garland-Thomson，1996；1997；2009；Quayson，2007；Murray，2008；Hall，2016；Bolt，2014），并着手通过其关注唐氏 综合症，这是一种相对较少受到关注的损伤类别。体能主义（有利于身体健全的人的歧视）和残疾主义（导致非规范身体、思想和社区被排除、根除或无效的压迫性社会实践和结构（Goodley，2014）的概念将作为该项目的一部分进行探讨，并将在话语和叙事分析中发挥不可或缺的作用。该项目还 借鉴批判医学人文学科的学术成果，对这些文化表征如何影响当代医疗实践、政府政策和立法，以及在本质上不友善的文化中唐氏综合症患者的自我意识进行持续分析。研究问题鉴于当前围绕产前筛查的生物伦理学争论