Un/inhabitable worlds: the curious case of Down’s syndrome

In her superb exposition of staring, Garland-Thomson (2009) draws attention to Chris Rush’s artistic piece Swim 2 which depicts a woman with Down’s syndrome in a regal pose. She continues: "The portrait invites us to stare, engrossed perhaps less with the “strangeness” of this woman’s disability and more with the strangeness of witnessing such dignity in a face that marks a life we have learned to imagine as unliveable and unworthy, as the kind of person we routinely detect in advance through medical technology and eliminate from our human community" (2009: 83). Garland-Thomson appears to make two separate ‘orientations’ (Friedner 2015): one in which Down’s syndrome is afforded a positive social imaginary marked by dignity and worth, and another in which this condition is categorised as an existence without value. Likewise, I see two different and competing ways of enacting Down’s syndrome, that is, as both a negative pregnancy outcome (via prenatal technology) and as joyous, enlightening, and not the misfortune one may initially imagine on receipt of a diagnosis (via parental accounts)

Prenatal screening for down’s syndrome: parent and healthcare practitioner experiences

This article reviews research on both parent and healthcare practitioner experiences of prenatal screening for Down’s syndrome. Whilst studies on Down’s syndrome screening are broad in scope and diverge in theoretical and epistemological foundations, their core focus can be classified into two main and intertwining categories: 1) the decision-making practices of expectant parents and why they do/do not participate in screening; 2) the interactions between parents and practitioners, particularly the discrepancies of knowledge and the pursuit of “informed choice” and “non-directive care.” To conclude, I highlight current knowledge gaps and the areas of substantial interest for future critical sociological engagements

Un/inhabitable worlds: the curious case of Down’s syndrome

In her superb exposition of staring, Garland-Thomson (2009) draws attention to Chris Rush’s artistic piece Swim 2 which depicts a woman with Down’s syndrome in a regal pose. She continues: "The portrait invites us to stare, engrossed perhaps less with the “strangeness” of this woman’s disability and more with the strangeness of witnessing such dignity in a face that marks a life we have learned to imagine as unliveable and unworthy, as the kind of person we routinely detect in advance through medical technology and eliminate from our human community" (2009: 83). Garland-Thomson appears to make two separate ‘orientations’ (Friedner 2015): one in which Down’s syndrome is afforded a positive social imaginary marked by dignity and worth, and another in which this condition is categorised as an existence without value. Likewise, I see two different and competing ways of enacting Down’s syndrome, that is, as both a negative pregnancy outcome (via prenatal technology) and as joyous, enlightening, and not the misfortune one may initially imagine on receipt of a diagnosis (via parental accounts)

‘It’s not that bad’: stigma, health, and place in a post-industrial community

This article highlights the importance of dissecting the complex relationship between stigma, health, and place. Drawing on qualitative research with young people in a post-industrial town in the UK, I explore how these young people reflect on their broad sense of health in a stigmatized community. I capture the multiple senses of place experienced by young people and how they come to imagine, negotiate, resist, and accommodate this stigmatization. I conclude by unpacking what implications place-based stigma has for policy as well as for studying young people's health and wellbein

Beyond tagging, poking, and throwing sheep: Using Facebook in social research

Much excitement, public and scholastic, surrounds the ascent of Facebook, a social-networking website attracting over 500 million users since its inception in 2004. Facebook has been increasingly integrated into the public sphere, proliferating media activities, communication practices, and social experiences. It has become a glowing reference to the mounting centrality of internet technologies in our everyday existence. A burgeoning phenomenon showing no immediate sign of exhausting the interest of the current populace, Facebook offers its users various functions including, but not limited to, requesting ‘friends’, chatting among peers, playing games, uploading and ‘tagging’ photos, creating events, posting on a user’s ‘wall’, ‘poking’ or ‘throwing sheep’ at other users, and sharing media with other users. Academic attention on Facebook has identified its importance as a communication tool for users to support existing offline connections (Bumgarner 2007), together with how it contributes to the experience of jealousy in romantic relationships (Muise et al. 2009), how it provides university students with a backstage area where role-conflict is worked through (Selwyn 2009), and how it presents a risk to privacy invasion by prompting users to disclose personal information (Debatin et al. 2009). Overwhelming coverage within the social sciences has been dedicated to the relationship between Facebook and privacy issues, online friendships, and building social capital. Given much less attention, however, is the methodological profits it has for our field. Referencing a qualitative study exploring how mothers adapted to their child being diagnosed with Down’s syndrome (Thomas 2010), this paper takes issue with the capacity of Facebook to be employed as a methodological tool and its role in the development of both the research topic and the methods facilitating an investigation of this topic. As well as being identified and approached using Facebook, mothers participated in online interviews via the social-networking site. The paper is best described as a reflexive account as opposed to a piecemeal compendium detailing each ‘correct’ course of action for achieving the methodological potential of Facebook. Rather than tendering a how-to guide, thus, the paper is, au fond, a how-I

An elephant in the consultation room? Configuring Down Syndrome in British antenatal care

This article is based on an ethnographic study of prenatal screening for Down syndrome in two British healthcare institutions. Drawing on observations of everyday hospital life and interviews with healthcare professionals, I identify how a discussion of Down syndrome is avoided within prenatal screening consultations. This relative silence is created and upheld owing to three observations: 1) the British public is interpreted as “knowing” what Down syndrome is; 2) the organization of care dictates that the condition is not classified as important enough to justify an explanation within consultations; 3) professionals frequently admit to holding minimal knowledge of Down syndrome. This absence, together with the condition being categorized as a “risk” or “problem,” helps produce and uphold its status as a negative pregnancy outcome. I conclude by highlighting the contributions that this article has for anthropologically exploring how ideas around disability intersect with the proliferation of reproductive technologies

The everyday work of healthcare professionals: an ethnography of screening for down's syndrome in UK antenatal care

This thesis reports on a UK-based ethnography of prenatal screening for Down’s syndrome across two hospitals. By studying the mundane and routine practices of the clinic, I initially capture how Down’s syndrome screening is organised and how its sedimentation as a taken-for-granted aspect of pregnancy contributes to the procedure being ‘downgraded’. This downgrading accomplishes hierarchies of valued/valueless work and professional specialities and also, therefore, of certain professional identities. In what follows, I explore the conduct of care and how professionals detach from Down’s syndrome screening by assigning responsibility for decision-making to parents-to-be. Professionals’ devotion to the rhetoric of ‘informed choice’ and ‘non-directive care’ also naturalises screening as a ‘normal’ part of pregnancy, this routinisation being extended by parents-to-be (often with professionals) privileging the ‘social’ rather than ‘medical’ dimension of ultrasound scanning. I continue by analysing how Down’s syndrome itself is constituted both inside and outside screening encounters. During consultations, the condition is rarely discussed and is substituted with dominant discourses of ‘risk’, ‘problem’, and ‘abnormality’. The condition is subsequently constructed as a negative pregnancy outcome. This intersects with the production and reproduction of ideas around perfection in the social practices and cultural materials of the clinic and how, if a diagnosis is established, the unborn ‘baby’ is recast as a ‘foetus’. By making this move, the unborn baby is denied personhood and a termination of pregnancy is made possible. To conclude, I highlight how the routine practice of prenatal screening for Down’s syndrome has transformed antenatal medicine, invigorated parental expectations, shaped issues around reproductive politics, and cultivated certain body-society relations

Playing pregnancy: the ludification and gamification of expectant motherhood in Smartphone apps

Like other forms of embodiment, pregnancy has increasingly become subject to representation and interpretation via digital technologies. Pregnancy and the unborn entity were largely private, and few people beyond the pregnant women herself had access to the foetus growing within her (Duden). Now pregnant and foetal bodies have become open to public portrayal and display (Lupton The Social Worlds of the Unborn). A plethora of online materials – websites depicting the unborn entity from the moment of conception, amateur YouTube videos of births, social media postings of ultrasounds and self-taken photos (‘selfies’) showing changes in pregnant bellies, and so on – now ensure the documentation of pregnant and unborn bodies in extensive detail, rendering them open to other people’s scrutiny. Other recent digital technologies directed at pregnancy include mobile software applications, or ‘apps’. In this article, we draw on our study involving a critical discourse analysis of a corpus of pregnancy-related apps offered in the two major app stores. In so doing, we discuss the ways in which pregnancy-related apps portray pregnant and unborn bodies. We place a particular focus on the ludification and gamification strategies employed to position pregnancy as a playful, creative and fulfilling experience that is frequently focused on consumption. As we will demonstrate, these strategies have wider implications for concepts of pregnant and foetal embodiment and subjectivity. It is important here to make a distinction between ludification and gamification. Ludification is a broader term than gamification. It is used in the academic literature on gaming (sometimes referred to as ‘ludology’) to refer to elements of games reaching into other aspects of life beyond leisure pursuits (Frissen et al. Playful Identities: The Ludification of Digital Media Cultures; Raessens). Frissen et al. (Frissen et al. "Homo Ludens 2.0: Play, Media and Identity") for example, claim that even serious pursuits such as work, politics, education and warfare have been subjected to ludification. They note that digital technologies in general tend to incorporate ludic dimensions. Gamification has been described as ‘the use of game design elements in non-game contexts’ (Deterding et al. 9). The term originated in the digital media industry to describe the incorporation of features into digital technologies that not explicitly designed as games, such as competition, badges, rewards and fun that engaged and motivated users to make them more enjoyable to use. Gamification is now often used in literatures on marketing strategies, persuasive computing or behaviour modification. It is an important element of ‘nudge’, an approach to behaviour change that involves persuasion over coercion (Jones, Pykett and Whitehead). Gamification thus differs from ludification in that the former involves applying ludic principles for reasons other than the pleasures of enjoying the game for their own sake, often to achieve objectives set by actors and agencies other than the gamer. Indeed, this is why gamification software has been described by Bogost (Bogost) as ‘exploitationware’