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

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