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

这个项目调查了从20世纪90年代到现在唐氏综合症患者在主要以英语为母语的背景下的纪录片和电视中的表现，重点是来自欧洲、美洲和澳大利亚的文本，以期探索这些文化表现对唐氏综合症患者的公共辩论、社会态度的形成和个人经历的作用和意义。它还考虑了这些文化文本与卫生、教育和社会关怀背景下的政策、信息提供和实践的形成之间的关系。这项研究是在唐氏综合症社区的关键时刻进行的。NHS将于今年推出侵入性更小、更安全的产前检查，包括血液筛查NIPT，这意味着出生的唐氏综合症婴儿越来越少。从这个意义上说，唐氏综合症患者面临日益严重的社会和文化边缘化，这是一些激进组织(如Saving Down)所称的优生政策的结果。鉴于根据基因筛查结果终止妊娠的决定在联合王国(北爱尔兰除外)是一种选择，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都不为过。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的胎儿的因素(Gee(2016)，已被广泛研究(Huang等人，2015；Reid等人，2009；Bryant等人，2006)。然而，这类研究很少从文化或残疾研究的角度出发，唐氏综合症患者的文化表征通常不被认为是决策过程中的决定性因素之一。这项研究源于文化文本对特定条件的思想、态度和情感反应的调节和塑造(Sontag，1991)，因此，如果我们要充分理解人们所做的选择，这些文本就需要调查。与所有媒体一样，纪录片不仅能塑造公民对唐氏综合症患者的态度和反应，而且能影响他们对产前检查和选择性堕胎的观念。伦理辩论和社会反应可能会受到媒体的影响，因此会对唐氏综合症患者享有的人权产生直接影响。该项目的重点是纪录片，因为它们通常被(观众和电影制作人)视为权威的知识来源，或“真相”或“现实”的提供者，尽管它们与虚构的文本一样被构建(Ellis和McLane，2006；Nichols，2001；Burke，2012)。在这样做的过程中，该项目利用了大量和不断增长的关于残疾的文学和文化表现的学术文献(Davis，1995；2013，Garland-Thomson，1996；1997；2009，Quayson，2007，Murray，2008，Hall，2016和Bolt，2014)，并开始通过对唐氏综合症的关注来促进这一工作，唐氏综合症是一种相对较少受到关注的损害类别。作为该项目的一部分，将探讨能力主义(有利于健全的人的歧视)和残障主义(导致非规范性机构、思想和社区被排斥、根除或无效的压迫性社会习俗和结构(古德利，2014)，并将在话语和叙事分析中发挥不可或缺的作用。该项目还利用关键医学人文学科的学术知识，以持续分析这些文化表现如何影响当代医疗实践、政府政策和立法，以及唐氏综合症患者在基本上不友好的文化中的自我意识。从当前围绕产前筛查的生命伦理学争论看研究问题

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