Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook

Discourse, Context & Media xxx (2018) xxx–xxx

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Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook Ranjana Das Department of Sociology, University of Surrey, United Kingdom

a r t i c l e

i n f o

Article history: Received 12 July 2017 Received in revised form 21 November 2017 Accepted 21 November 2017 Available online xxxx Keywords: Charlie Gard populism Social media Patient Campaign Facebook Twitter

a b s t r a c t This article analyses discourse on a new and ongoing online patient-support community to demonstrate how it performed populism. It demonstrates how the more than sixty thousand strong social media ‘Army’ formed around a terminally ill baby at the centre of a parent-judiciary-hospital legal battle, used key tropes and devices of populist rhetoric to establish lay-expertise in its performance of support for the ordinary patient and their family, de-recognizing and vilifying medical expertise and publicly funded healthcare systems built on socio-democratic ideals. The article shows how users’ mobilization of populist rhetoric to reject professional expertise and public institutions, made use of established architectural features of the online community’s socio-technological design, such as immediacy, remediation and protective gatekeeping. The paper argues that this fed into and out of an environment of disdain for public services and expertise in contemporary UK. Ó 2018 Elsevier Ltd. All rights reserved.

1. Introduction This article draws from an ethnographically motivated nonparticipant observation of an ongoing and very young online patient support community in the UK, to present an analysis of its discursive practices. It demonstrates how it performs populism (c.f. Canovan, 1982, 1999; McRae, 1969), and both draws upon and contributes to a climate of opinion fuelled by what has recently been described as media populism (Krämer, 2014). Using the theoretical lens of populism and climate of opinion, it demonstrates how the more than sixty thousand strong social media ‘army’ (61,337 members at the time of writing this paper) formed around a terminally ill baby at the centre of a parent-judiciary-hospital legal battle in Britain in 2017, uses key tropes and devices of populist rhetoric to establish lay-expertise in its performance of support for the ordinary patient and their family, de-recognising and vilifying medical expertise and publicly funded healthcare systems built on socio-democratic ideals. The article also demonstrates how ordinary users’ mobilization of populist rhetoric to reject both professional expertise and public institutions, make use of established architectural features of the online community’s sociotechnological design (c.f. Escobar et al., 1994; Ley, 2007), such as immediacy, remediation and protective gatekeeping. Populism has, till now, been used largely for the study of politics and medi-

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ated political communication (c.f. Meyer, 2006; Hameleers & Schmuck, 2017). By drawing upon this body of work to inform the analysis of a patient-support community (see also Loader et al. 2002; Preece, 2010; Armstrong et al., 2011 on online patient communities), this paper also discusses the public implications of these findings, calling for considerations of the impact of digitally mediated populist ideologies, campaigns and rhetoric on public perceptions and expectations of healthcare systems and professionals. The patient support group in question is called Charlie’s Army – the official, family-created Facebook support page for a terminally ill baby who was born in the UK in summer 2016 and was in the care of the UK’s leading Great Ormond Street Hospital for children (henceforth GOSH). Charlie had an extremely rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) and was left with severe brain damage and an absolute inability to perform any normal physiological functions including breathing on his own or crying. Doctors at GOSH declared it in his best interests to turn off his life support (see The Guardian, 2017 for an overview of the case). His parents claimed it in his best interests to take him abroad for an experimental treatment for which they have crowdfunded vast amounts of money but for which there is very scant and dubitable evidence. A legal battle ensued between the parents and the hospital over the child’s ‘best interests’, and the parents lost their case three times to argue for experimental treatment for the baby, at the British High Court, the Supreme Court and the European Courts, who all agreed

https://doi.org/10.1016/j.dcm.2017.11.005 2211-6958/Ó 2018 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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with medical teams that Charlie’s life support needed to be switched off to prevent any further suffering for him. The Pope, President of the USA, a Republican Senator from the USA and a controversial pro-life faith preacher also from the USA became involved in arguing for extending treatment for Charlie, with a Facebook group called ‘Charlie’s Army’ (maintained by the Gard family) organising a variety of demonstrations, protests and sale of merchandise across the UK and other countries like Spain and Italy. The ‘Charlie’s Army’ Facebook page opened up in spring 2017. Membership of the group and activity within the group increased manifold in the months of June and July 2017 as the legal battle between the parents and GOSH (the hospital Charlie is at) progressed. At the time of analysis in early July 2017, there were 61,337 members, 10,150 posts, 3454 authors, 12,893 commentators, and 31,183 reactors. The group seamlessly connected with on and offline media, and its actions spilled across the online and the offline. In the short period since its inception, the group has seen approximately 3500 photos, 610 videos, 436 links, 5500 new statuses and the organization of 84 events. These numbers continued to grow as this paper was written. While the membership and administration of the group is predominantly British, and the moderators include the Gard family members, occasional contributions can be found from other countries, especially those where public figures have spoken out in support of Charlie’s continues medical treatment, such as the USA and Italy. Since Charlie Gard’s death, the group has continued to survive, but primarily as a memorial site which is, first, continuing to fundraise, and second, continuing to witness digitally produced artefacts of outpouring of anger, sorrow, love and other similar strong emotions, from posters. The primary purpose of fund-raising, having already raised a huge amount of money, is no longer relevant, but the fundraising attempts continue on the group. At the time of concluding this paper, the group is arranging the sale of Charlie Gard themed Christmas baubles, to ‘raise money for Charlie’s Foundation’ (see Fig. 1). The legal, medical or ethical decisions involved in this complex case are outside this paper’s remit, as are the causes or potentially far-reaching consequences of the discourses analysed in this paper. Rather, this paper focuses on the nature of discourse and the rhetorical strategies employed by a 61,337 strong online patientsupport community, analysing the production and maintenance of populist rhetoric by using the architectural features of social media. Online patient-support communities have been at the centre of attention over the past decades in fields as diverse as medicine and communication studies, showing rich findings on the supportive and empowering aspects of their rhetoric (van UdenKraan et al., 2009; Bartlett & Coulson, 2011), the role of wellinformed participants in renegotiating relationships between expert knowledge and lay experience (Loader et al., 2002), these

communities’ impact on patients’ health and social outcomes (Eysenbach et al., 2004), patterns of sociability, usability (Preece, 2010), identity and authority (Armstrong et al., 2011) and the often smooth interfaces between face-to-face and online support (c.f. Turner et al., 2001). The community is question has a specific role that is different from most support communities, in that it is formed and maintained as a campaign, in support of a single patient who is unable to speak for themselves and who is constantly produced as a nearly mythical figure – with a range of affective frameworks ascribed to him, and used of when manufacturing artefacts which aim to speak on his behalf. Contributing to, but offering a different focal point to this body of literature above, this paper analyses discursive practices in this online community in the context of a steady rise of populist ideology and rhetoric in the UK and other Western countries, and draws attention to the complexities of the unfolding relationships between public institutions and private individuals in a digitally mediated age. This paper is organised into four major sections. The first constructs a triangular conceptual framework bringing together theorisations of populist rhetoric and media populism, the relationship between populism and theorisations of the climate of opinion in the context of remediated communication, and theorisations of the material, architectural features of networked communities. The second section presents an account of the methodology pursued in this paper. The third presents findings in three analytical strands, each mobilising different aspects of the framework proposed. The final section discusses the implications of these findings, in the context of a range of interlinking fields in communication studies and suggests areas for future research. But equally, I note here, that the group and its dynamics are fascinating, from a social scientific perspective, and many potential inroads into analysing it are possible. How, for instance, is a very specific image of motherhood and the mother figure produced and maintained here, through the use of strongly affective frameworks? How do group members seek to conform, and selfrepresent themselves? How does dissent and silence operate here? Where, given the nature and purpose of this group, and the discourse it produces, does the group sit within communication studies’ longstanding interests in activism and what Marichal (2013) has recently called micro-activism? Surely, the lens of populism is one of many possible inroads into what has opened up as a complex site of inquiry, and as such, this paper offers one of many possible insights into the site. 2. The mediated architectures of populism In what follows I bring together three strands of theory to produce a fruitful intersection which is mobilized later to present findings. The first strands draws from the theorizing of populism,

Fig. 1. The sudden rise in activity (posts, reactions and comments) in Charlie’s Army.

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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populist intention and rhetoric in contemporary Western democracies (c.f. Laclau, 2007; Albertazzi and McDonnell, 2008). The second strand links this discussions with the theorization of the climate of opinion (c.f. Gunther et al., 2001, Salmon and Neuworth, 1990) fuelled by and fuelling populism, and the third brings to these, a discussion of the architectural affordances of social media spaces. 2.1. Populist rhetoric and its discursive markers Populism has long been discussed as an ideology (McRae, 1969; Mudde, 2004) which posits an image of the forgone, or left-behind as the opposition to ‘the establishment’ peopled by ‘the elites’. In contemporary times, as witnessed during the recent American electoral campaign, the Brexit Leave-EU campaign in the UK, or in the 2016–17 presidential campaign in France, this mythical and idyllic image of the left-behind has been mobilized in mediated political discourse as varyingly – ‘the ordinary folk’, or ‘people outside the parliamentary bubble’, who are placed against ‘the elite’ – a term used not just for politicians, but also for professional experts in any sector, for whom a range of terms from ‘jobsworths’, to ‘the air police’ (for environmental protection agencies) are often reserved (see Canovan, 1982; Priester, 2011). The rhetoric itself of course does not fall neatly into a particular political stance on the left-right spectrum, but rather represents a set of attitudes and markers which all position ‘the common people’ against ‘the Establishment’ from whom redemption must be sought by any means possible, with the core spirit of populism falling across right and left political boundaries (see Stavrakakis and Katsambekis, 2014 on left-wing populism), and encompassing a range of sociopolitical positions from progressive to the far-right (see Ionescu & Gellner’s ground-breaking volume on populism, 1969). While populist movements in Western democracies recently have aligned with far-right nationalist politics, De Cleen & Stavrakakis (2017), in their attempts to disentangle populism and nationalism, provide a useful contemporary definition of populism as ‘‘Populism is a dichotomic discourse in which ‘‘the people” are juxtaposed to ”the elite” along the lines of a down/up antagonism in which ‘‘the people” is discursively constructed as a large powerless group through opposition to ‘‘the elite” conceived as a small and illegitimately powerful group. Populist politics thus claim to represent ‘‘the people” against an ‘‘elite” that frustrates their legitimate demands, and presents these demands as expressions of the will of ‘‘the people”. (p 10). In this context, Stanley’s (2008) reminder is useful, that populism is ‘‘a ‘thin’ ideology which, although of limited analytical use on its own terms, nevertheless conveys a distinct set of ideas about the political which interact with the established ideational traditions of full ideologies” (p 95). 2.2. Remediation and the climate of opinion Media and communications scholars have paid attention in recent years to the relationships between the media and populism (c.f. Meyer, 2006; Krämer, 2014; Hameleers & Schmuck, 2017) amidst growing focus on the mediation of politics and political communication (Bennett and Entmann, 2000). Krämer’s (2014) theorization of media populism defines it as the use of ‘‘stylistic and ideological elements by some media, viz. the construction and favouritism of in-groups, hostility toward, and circumvention of the elites and institutions of representative democracy, sentiments (thus on an emotionalizing, personalizing, and ostentatiously plainspoken discourse)” (p 48). This definition, which Krämer suggests shapes the manufacturing of a ‘climate of opinion’

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proves most useful in the context of this paper, when placed against Bolter and Grusin’s seminal work on remediation (1999). Krämer’s claim that the manufacturing of a climate of opinion is one of the outcomes of media populism, whereby there is a mutually reinforcing relationship between a communicator’s representativeness and the perceived validity of his or her message, finds particular meaning in Bolter and Grusin’s account of the ‘collision’ of old and new media, where one form of mediated communication, in overt and covert ways, remediates what went before. As will become apparent from this paper’s focus on the use of hyperlinks in the manufacturing and maintenance of populist consent on an online group, the coming together of legacy and niche media, on and offline media, and a blurring of boundaries between all forms of mediated communication, all work to contribute to the maintenance of both the nature of discourse and the heightened level of immediacy and emotive response within it. Of particular relevance here is Krämer’s (2014) reminder of the more qualitative aspects of the climate of opinion rather than its quantitative measurements ‘‘the status of one attitude as the legitimate, ‘‘natural,’’ ‘‘reason able,’’ commonsense’’ orthodoxy, the structure or construction of the camps (elite or non-elite, social identities and boundaries), and, as a consequence, the form of political legitimation implied by these properties of the respective positions (charismatic, plebiscitary, representative, etc.)” (p 57). Blumler and Kavanagh (1999) also pay attention to the range of mediated devices through which populist rhetoric enters public discourse. As is evident also from the discursive and hypermediated practices on this support group as outlined below, ‘‘the identities and styles of these efforts are extraordinarily diverse, ranging from the combative to the reflective and from glossy voyeuristic to the ultra-Athenian” (p 220). 2.3. Socio-technological features of social media spaces To make sense of how populist rhetoric constructs and maintains itself in social media requires an understanding of the materiality of technological artefacts (Hutchby, 2001) looking into the affordances of social media spaces, and noting how their social and technical design (Escobar et al., 1994) creates an architecture within which practices underlying populism can be crafted and pursued. A large part of work on online communities has sought to focus on the relationship between site design and site discourse (c.f. Orgad, 2005; Worthington, 2005; Ley, 2007), and the key outcomes of this work has been a recognition of their simultaneously resourcing and constraining, enabling and disabling features, in line with developments within science and technology studies around the materiality of technologies (Siles and Boczkowski, 2012) which recognize the role of technologies as texts, which are shaped by and shape contexts around them. Siles and Boczkowski’s work (2012) on online spaces as ‘texto-material assemblages’ theorises from a long and rich body of work to note that ‘‘users are able to transform the materiality and meaning of artefacts, but the affordances and features of these artefacts also affect their agency” (p 231). They go on to develop their theorization of texto-material assemblages to stress that user agency in this context cannot be understood as either there, or not, and that it is better understood as a fluid and shifting interaction between users and technologies. While this paper is unable to provide the temporal extension that is needed for a true account of user agency in interacting with these spaces, their focus on placing materiality of online spaces at the centre of discussions of user agency is critical to the way populism is maintained as the default narrative in the group in question. Equally key here, is what Ley (2007) calls the architecture of commitment in her work on an online mother-

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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ing group. She draws attention to how ‘‘site design does not necessarily possess meaning and significance in itself. Rather, the impact that it has on commitment depends partly on the social and historical contexts in which members produce and use a site.” (p 1403). Her attention to the mutuality of ‘group norms’ (a component of the socialities arising on the site) and architectural norms (the techno-logics of its design) and the mutual shaping between the two is of particular relevance here. 3. Methods My methods for this paper draw much from the principles of virtual ethnography (Hine, 2000) although I qualify this statement below. The group and all discussions on it are publicly visible but membership is contingent upon answering ‘yes’ to three questions about one’s allegiance to supporting Charlie’s parents’ desires to give him experimental treatment. I did not apply for membership and was therefore precluded from participating in the group. Throughout, I was inspired by the long history of virtual ethnography, including work by Baym (1995) and Markham (1998), in the early years, to the work within cyber-culture studies in more recent years (c.f. Silver, 2000) and to Hine’s theorization of the principles of virtual ethnography (Hine, 2000). However, I draw attention to the fact that I did not take my research offline, for instance, to interview participants, and approached the site itself as a discursive space shaped by as much by textual norms as by regulatory gatekeeping and moderation. As such, therefore, I describe this work as ethnographically motivated, rather than as a virtual ethnography which might arguably include relationship building between participants and researcher, and even extending the context of the ‘site’ from online to offline (c.f. Hine, 2000). I observed the group daily, since its inception, reading every post and every comment chain arising on each post, since inception, making detailed notes as days progressed, setting aside time at a specific time each day to check in on the group. I worked primarily with pen and paper, and maintained hand-written records of my thoughts, and collected screenshots of relevant exchanges which I annotated in pen and paper over the months the group has been active. The theoretical framings emerged halfway through this period, with the conceptual lens of populism becoming clearer as the legal battle progressed between the state healthcare services and private actors (Charlie’s parents). I paid particular attention to the design of the site and the kinds of engagement that were allowed at the intersection of site design and moderation and gatekeeping approaches. I was also inspired by Whiteman’s (2012) account of her work on publicly accessible bulletin boards which discusses in detail the ethical considerations behind her decisions to not participate on the forums, to not seek informed consent, and to acknowledge that not seeking informed consent and conducting covert analyses of publicly available data often invites looks of surprise (Whiteman, 2012). Her argument that ‘‘obtaining consent in online environments can be both difficult and disruptive” (p 19) is particularly relevant in a group where an application for membership is contingent on a pre-declared allegiance to taking sides in a complex legal interface between state healthcare bodies and parents. Concurring with Whiteman’s assessment that behaviour in the public domain can be analysed without consent, I too concluded, that since the content posted on the group analysed here is publicly visible, and as content from it had started to appear regularly on other discussion forums, websites and indeed the popular press, I would not be seeking consent. Posters on the group demonstrate awareness that their posts are publicly visible and often hyperlink to other websites where their discussions are cited. As posters on Facebook are not anonymous, I have anonymized them when direct quotes have been used in this paper for illustrative purposes.

4. Findings 4.1. Lay mobilization of populism in the public performance of patientsupport In keeping with the theorization on how populism works as rhetorical practice (c.f. McRae, 1969; Canovan, 1982; Priester, 2011, and De Cleen & Stavrakakis, 2017), Charlie’s Army displayed a range of ‘markers’ of populism, producing and maintaining ingroups and out-groups. In this strand, I provide instances of three key findings, all of which, taken together outline the lay mobilization of long-standing populist devices in the public performance of patient support. These four markers include (1) the creation of ethical-moral distinctions between a vulnerable in-group and an evil out-group, (2) blame attribution to produce professionals as evil and generate a rhetoric of vulnerable ordinariness, (3) and the rejection of expertise with ‘common sense’. In what follows I expand on these findings using illustrative instances from the data. 4.2. Moral distinctions between in and out-groups Displaying one of the classic markers of populist rhetoric, discourse was used on the group to produce ‘the Establishment’ (state healthcare systems, doctors, nurses, the judiciary and most politicians) as evil and damaging – the out-group; and ‘ordinary’ people as the wronged and vulnerable in-group whose voices must be heard. Heightened emotions ran through the selection of words on the group, with calls to offline action, to take down the outgroup who are portrayed as being involved in the ‘killing/murder’ of a baby. One of the rhetorical devices used was to mis-spell the abbreviation of Great Ormond Street Hospital (GOSH) as GOSP (Great Ormond Street Prison) or as GOSH (Great Ormond Street Hell). There were frequent cries that the out-group (GOSH and the judiciary) are ‘‘holding Charlie hostage”, ‘‘condoning murder” and ‘‘disposing of the disabled”. The manufacturing of experts and professionals as motivated to ‘finish off’ a baby provided a strong, coherent and convincing narrative which resulted in many participants, on most occasions mothers, sharing emotional accounts of alternating helplessness ‘against the system’ and hundreds of posts expressing acute fear, suspicion and anxiety regarding British doctors. As one mother said – ‘‘never in hell will I be found dead with mine anywhere near GOSP. First sign my bubba is ill we move to America”. 4.3. Blame attribution to maintain the vulnerability of ordinariness These moral distinctions functioned through and produced blame appropriation on ‘the elites’. This was voiced clearly by a poster who followed up a discussion celebrating populist media content with these words ‘‘you don’t have to believe what they tell you. These people has (sic) no qualms. They are the new Nazis. They want to reduce the number of sick, practicing culture of death! We have to be awake, alert! The world has too many inhabitants. They want to decrease the number. Who does not produce income, dies. The best way to hide something, put it well in view. They are bad. They don’t have feelings. Look out! Careful. Because what happens to charlie, to happen to (sic) thousands of others.” A variety of blames were attributed on the hospital, ranging from very specific allegations of administering morphine to Charlie solely to win a court case to prove that he was in pain, or allegations that GOSH were so focused on winning the legal battle so as to keep their many untold crimes against sick babies covered up, to vague and wide-ranging allegations like the ‘system’ was

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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handing out the ‘death penalty’. Blame attribution in this case worked through the use of linguistic markers of heightened emotion to maintain us-versus-them boundaries - as one poster said she thought GOSH should be attacked with a ‘‘bazooka”. This was one of many instances of the use of often violent and heightened emotive terminology to maintain strong us-versus-them boundaries between public institutions and private individuals. 4.4. The rejection of expertise with ‘common sense’ The rejection of expertise has a long acknowledged role in populist discourse (c.f. Zimming, 1996). Charlie’s Army demonstrated this through the constant use of personal anecdotes and opinion to reject professional assessments and expertise. A few instances of these included responses to a July 2017 decision by the High Court that there was no evidence that Charlie’s head has grown, by people photo-editing social media pictures of Charlie for the judiciary to ‘‘see from photos how he has grown”; group members insistence that what the professionals recognise as swelling and oedema on the terminally ill baby is just that ‘‘he is a chunky monkey”, whose ‘‘weight will drop off once he is walking xxx”; and allegations that the baby ‘‘should have just been given paracetamol” instead of morphine to manage pain. These were attendant with many declarations of the strength of maternal and parental ‘instinct’ which apparently invalidated medical opinion. As notes, such anti-Establishment spirit gives populist rhetoric an immediate and palpable entry to self-presenting itself as democratic and representing the will of the people – the people, especially parents, who possess anecdotes and instinct which must trump expertise and scientific knowledge. Many parents on the group posted photographs of their own children’s ‘Red Books’ – a British system of maintaining 0–5 years weight and height records amongst other things – to potentially use as ‘evidence’ in court that the baby in question was perfectly normal and growing healthily. This ties in also with the use of heroic illness narratives (c.f. Page, 2012) which I touch upon in what follows. 4.5. Remediation of populist rhetoric within a climate of opinion Building on the work on media populism and its contributions to a climate of opinion (c.f. Krämer, 2014; Gunther et al., 2011), I demonstrate in this section how Charlie’s Army both remediated populist elements from a range of other media sources and contributed to the climate of opinion through multi-level opinion leadership within it to lead the moral and ethical tones of the discourse. In this section, I provide instances of three key findings, all of which, taken together demonstrate the remediation of populist rhetoric from a range of sources to draw upon and contribute to a climate of opinion. These include (1) the justification of populist rhetoric through the selective use of certain right-wing tabloid press sources, and right wing media commentators on television and radio, (2) the mediation of personal stories of parenting through childhood illnesses to support and establish heroic illness narratives (3) and drawing upon scant, sporadic but nonetheless critical social media interventions from populist political and public figures. 4.6. The remediation of media populism Krämer (2014) succinctly defines media populism as ‘‘the use of [..] stylistic and ideological elements by some media, viz. the construction and favoritism of in-groups, hostility toward, and circumvention of the elites and institutions of representative democracy, reliance on charisma and (group-related) common sense, and appeal to moral sentiments (thus on an emotionalizing, personalizing, and ostentatiously plain- spoken discourse).” (p 48). These pre-

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cise characteristics were mobilised by Charlie’s Army through the regular circulation of headlines and stories from well-known populist media sources such as Fox News and the Daily Mail. Here too, stories were mediated selectively, filtering out accounts that aligned with the judiciary or medical professionals’ views. The ideological elements and political underpinnings of the remediated populist media content that the group shared usually had to do with placing responsibility for this situation on a socialist healthcare system which seemingly works to fail the populace. Populist media content which was recirculated supported a range of theories of conspiracy voiced in the group, each aligning politically and ideologically, against socialist systems of healthcare, each manufacturing a consumer interest in healthcare, framing citizens as customers/clients of the NHS. When legacy media content was off-track as far as the interests of the group were concerned, for instance when a usually populist news source published an opinion piece that seemed to, at least at first glance from the headline, align with the hospital’s views, comments flooded in either to dismiss these as one-offs and aberrations, or to remove them from the group on grounds of being ‘unsupportive’. As one poster said about an article in Mail Online (the online version of the right wing tabloid the Daily Mail) which carried the views of a mother urging Charlie’s parents to ‘‘let him go” – ‘‘Finally – why only now ?! They publish it . . .5 min before possible death penalty.” This selective use of media sources to only circulate populist content taking a strong stance against socialist healthcare systems, and filtering out ‘aberrant’ content through the use of heavily emotive terminology such as ‘‘the death penalty” was a strategy through which media populism was made use of within the group to maintain a climate of extreme like-mindedness and heightened emotion. 4.7. The selective mediation of illness narratives This climate of extreme like-mindedness was fuelled by the ongoing maintenance of heightened emotional registers on the group, deriving energy from the mediation of countless stories of personal struggles, shared by parents of critically ill children, or children who have been critically ill in the past. Critical research on the use of narratives in social media shows how ‘‘recency is prized over retrospection and updates are distributed within a multidimensional web of connections between Facebook Friends [. . .] and archived in reverse chronological order” (Page, 2010, p 423). As research on illness narratives demonstrates, the power of stories (c.f. Bamberg et al., 2007) makes use of narrative to present, produce, maintain and reproduce oneself and one’s own identity by creating a coherent story to tell. Illness narratives (c.f. Frank, 2000) are of particular relevance here as all the personal stories permitted and allowed to remain on the group are ‘coherent narratives with a positive outcome, hence favouring restitution’ (Page, 2012, p 50). What was striking however, was that none of the children whose stories were shared as heroic narratives with positive outcomes, had the disease that Charlie had. Whatever be the illness in question, positive visual imagery and celebratory text accompanied these narratives to generate a host of comments about why Charlie ‘deserves’ the ‘same chance at life’, drawing focus away from the specific complexities of his rare mitochondrial disease, and feeding in again, to a representation of doctors and healthcare systems as taking chance away from someone they have deemed to be undeserving. On the rare occasion however, that an illness narrative argued for palliative care and an acceptance that the end of life was near, group members made the case that these circumstances were different, and that Charlie’s illness was a different one. As a poster commented on this rare case – ‘‘This other woman’s story is so not relevant to Charlie, her baby pretty much was bought back from death, starved of oxygen so had no hope of anything, Charlie is different.”. This dichotomous response to ill-

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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ness narratives revealed a deep-seated preference for positive narratives within a climate of extreme like-mindedness. 4.8. Sporadic participation from populist figures As the literature on populism reveals, charismatic leadership styles have usually been attendant with populist discourse (c.f. Mudde, 2004). The Charlie’s Army campaign has been fuelled by the occasional tweet or soundbite from populist political leaders. The US president’s tweet supporting Charlie’s treatment, the Pope’s comment along the same lines, the UK Independence Party leader’s support of the same sentiment, certain Republican senators’ attempts to get Charlie American residency, and right-wing commentators such as Katie Hopkins, Piers Morgan and Sarah Vine were used multiple times on the group as support for the group’s case, support against the actions of Britain’s state healthcare system, and a construction of the us-versus-them narrative (see Fig. 2). As the figure above illustrates, these figures were repeatedly approached, often in a coordinated ‘thunderclap’ of tweets (discussed later), also called e-bombing, or mail bombing, to reach out once again, to tweet once again, in support of Charlies’ parents. This scant, distant and sporadic but nonetheless transformational support from public personalities lent both legitimacy and reassurance to the group that their ‘cause’ is not futile, and that their grievances against an evil Establishment are shared more widely. This resulted in discourse on the group which took to painting countries such as the UK which have free-at-the-point-of-use health-care within a socialised system as autocratic and damaging, with other countries such as America portrayed as liberating and freeing, notwithstanding the ongoing debates around health-care provision in the USA, or its poor record of maternity leave for instance. 4.9. The architectural contexts of populist patient-support Drawing upon work on the relationships between site design and site use and moderation (c.f. Orgad, 2005; Worthington, 2005; Ley, 2007), especially Ley’s attention to the mutuality of ‘group norms’ (a component of the socialities arising on the site) and architectural norms (the techno-logics of its design) in this section I demonstrate how Charlie’s Army maintained on and offline markers of populist discourse through a combination of technological affordances (Hutchby, 2001) and site management through the use of top-down management, gatekeeping and censoring strategies. In this section, I provide instances of two key findings, both of which, taken together demonstrate the user-

Fig. 2. One of many mediated strategies to draw from and reach public figures.

technology interface which provide the architectural contexts within which this populist rhetoric works. These include (1) the use of gatekeeping strategies to define and maintain groupings of very like-mindedness, including the use of top-down, heavy handed censoring strategies of opinion-leadership, (2) the production of new tactics and artefacts of impact generation using hyperlinks. 4.10. Gatekeeping and moderation strategies to define and maintain very like-mindedness The group displayed a strongly monitored entry policy which discursively made evident its social media intentions on the one hand, and sought very like-mindedness and allegiance on the other. Three questions popped up automatically when a ‘join group’ button was clicked – (1) how did you hear about Charlie’s Army? (2) Do you support Charlie’s case? (3) Will you share, like, and help promote Charlie’s fight on social media? As is evident here, the second question demands very like-mindedness and the third question places responsibilities of mediation on the shoulders of every member, thereby also inviting a sense of camaraderie and belonging, invoking these same sensibilities through the very use of the word ‘army’ in the group name. Over the course of time, gatekeeping was performed publicly within the group by group administrators as well as by group members ‘tagging’ administrators to highlight the presence of people the group feels are straying from their positive responses to questions 2 and 3 above. Throughout, anybody who expressed an opinion that aligned with professional expertise, or with the National Health Service, was ‘‘flagged to admin” by tagging an administrator and the concerned poster was promptly removed from the group. Gatekeeping was an ongoing project in this case, and one which demanded the participation of all members, including filtering out all ‘‘angry” faced reactions (one of the many reactions to Facebook posts that the site affords) on like-minded posts, and identifying lurking non-likeminded posters through that route. Removal from the group is accompanied by posts such as ‘‘the non-supporters only care for their own lot in life, they have no compassion and possibly not charitable people and don’t want to see outside of their cosy little box”. Moderators in this group seemed to operate at two levels - the formal, officially identified moderators with the power to contact the Gard family, arrange donations, and pass on any gift items being sent by the ‘army’ on the one hand, and a constant flow of moderation in disagreement and debate, from ‘ordinary’ members of the group. One such instance of unofficial moderation is from a poster who says – ‘‘This page is a place for support!! Could you NON SUPPORTERS remove yourselves!! You are allowed to have your opinions. Just not on this page. Please and thank you!!” This worked to lead opinion within the group by creating climates of extreme like-mindedness and also by setting a continuous stream of priorities – for instance, requesting group members to ‘bombard’ public figures such as the American president with tweets, urging fellow members to tweet and share the pages of Republican politicians in the USA who have supported the parents, asking for coordinated mass sharing and tweeting of supportive articles by columnists in right-wing tabloids, amongst others. These priorities manufactured a constant agenda for the group, and created ‘work’ for each individual to perform to stay true to the group’s motto – ‘‘if he’s still fighting, we are still fighting!” These became the digitally mediated replacements for the offline charismatic leadership that has long been said to accompany populist discourse and ideology (c.f. Mudde, 2004). Appreciation for such leadership followed as well – ‘‘I always respected them(the admin) but once u see how pages can be run so wrong then u see this admin team control run and help and do not allow bullies well admin again thank you”.

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

R. Das / Discourse, Context & Media xxx (2018) xxx–xxx

4.11. Socio-technical artefacts of hyperlink management The vast majority of posts on the group used hyperlinks to likeminded media, arising most often from LBC Radio, the Daily Mail or Fox News. The group was encouraged by moderators and by individual members to create new social media artefacts, such as infographics curating photographs on a timeline, alternative FAQs to replace the publicly available FAQs from the hospital, animated graphics including the group emblem of the blue heart, the digital editing of Charlie’s photos with those of other children who have gone on to improve from unrelated medical conditions, a vast range of merchandise sold in the Charlie’s Army shop, like air fresheners, wristbands and shirts which have been photo-edited to convert into photo products, amongst others. These devices are heavily multimodal (Kress, 2003), demand and reflect a certain level of technical expertise and literacy, and the group exhibited a keen awareness of the ‘power of tweets’ as one member put it (see Fig. 3). The figure above presents a selection of the mediated artefacts produced and mobilised by this group. A few artefacts in particular stand out in this process. The first is what the group termed a ‘‘thunderclap”. A thunderclap occurs when an administrator announces on the discussion feed that an announcement will shortly be posted, and members should be ‘‘ready”, and the moment it is posted, like a thunderclap in nature, members will hit ‘‘share” on the announcement on all their social media channels, to maximise impact. The thunderclap has been Charlie’s Army’s own socio-technical device, then, that makes use of hyper-

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linked architecture and mass allegiance with a pre-planned aim to bombard news feeds. Religion was invoked frequently in the group through the use of video-sharing, and Facebook’s ‘‘a member is live” functionality. These live videos emerged from churches, many in Italy, or from pastors saying words in prayer to support the parents’ case against the hospital. These public leaders, digitally mediated into the group by the many leaders of group opinion, then worked to lead opinion within the group using both religious fervour and the site’s ability for live-casts. These took the form of video artefacts as here when a member posts – ‘‘a video message in Italian and English for little Charlie and his family by the Friars and the community of the Sanctuary of San Francesco da Paola.”

5. Discussion and implications In this paper I have argued that the Charlie’s Army online community has attempted to intervene in a complicated legal battle between state healthcare services and private individuals by producing and maintaining populist discourse at the intersect of the materiality (Siles and Boczkowski, 2012; Hutchby, 2001) of social media, and the creative, multimodal and agentic work performed by a carefully selected and monitored group of users, on a social media patient-support forum. I have argued that this was achieved through the creation of moral and ethical distinctions between an evil outgroup (state healthcare and the judiciary) and a wronged in-group (private individuals and parents of ill children) and a

Fig. 3. A selection of the group’s multimodal digitally edited creations.

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

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rejection of professional expertise with ‘common sense’. These distinctions were maintained I pointed out, through blame attribution using emotive language and descriptors of violence (for instance, describing healthcare providers as ‘murderers’ and ‘scum’), all of which served to maintain us-versus-them boundaries which associate ordinariness with vulnerability. I have shown how these markers of populism involved the remediation of populist discourse from specifically right-wing legacy media, including the tabloid press, television news programmes and radio talk shows featuring right-wing populist leaders and commentators, populist public leaders’ social media comments, as well as the telling of many personal accounts of (often unrelated) illnesses. These discourses emerged, I have argued, at the intersection of site design and site management in a publicly visible, but closely policed, heavily censored platform which only offered entry to the very like-minded who were then constantly subject to review, and it used a specific language of social media strategies to maximize the hearing of voices (for instance, the ‘thunderclap’). It is important to note that the group has been reaching out to the parents of other very ill, often terminally ill children with complex and rare medical conditions, and similar groups are emerging on social media, each arguing against medical expertise and each mobilizing a moral distinction between private parents who are presented as having been purposefully wronged on the one hand, and intentionally harmful and misguided public services on the other, with these polarised conversations punctuated by interventions from populist figures such as preachers, pro-life pastors and activists and psychic mediums see (see Fig. 4). I argue that this discussion of mediated populist discourse on a patient-support campaign, is of public relevance because it is both symptomatic of and potentially impactful for the kind of relationship that is unfolding in the UK, and potentially other Western democracies, between public institutions and private actors. Underlying populist rhetoric in the UK, is an ongoing climate of critical opinion against the public services including the National Health Service. In the context of three successive electoral victories for the Centre-right, a series of austerity measures have been instituted over the past decade, impacting public health services and the services they are able to offer (see BBC, 2017). For instance, the primary port of call for new parents with children under the

age of 5 – the Health Visiting services – are struggling (Health Visitor Implementation Plan (2011–15) owing to public funding cuts. This is legitimized in popular discourse, such as in the tabloid press, as failings on the part of socialized healthcare systems, which is free at the point of use. This rhetoric of suspicion and disdain for public services, at popular culture and policy levels, works simultaneously to undermine those very services which have being subjected to budget cuts, which both brings out and contributes to an atmosphere of apathy towards public institutions created towards social-democratic aims see (see Fig. 5). As is evident from the figure above, the Charlie’s Army online group practiced rhetorical strategies that could be read to be an outcome of this climate of opinion, as well as feeding into it – and this feeding in beckons even more careful attention as it involves the terminal illness of a baby and is therefore an emotive topic for parents. Setting aside the ethical considerations arising out of this case around public perception of what was commonly termed ‘parental rights’ versus the reality of the state’s support of the rights of the child, critical intellectual attention is required on these sorts of social media campaigns in the realm of healthcare because these have a bearing on the kind of relationships emerging between private individuals and public healthcare providers, with a bearing on questions of parental anxiety, trust and risk management. The obvious limitations of the methodology adopted in this paper is that the virtual site remained in isolation from the lived practices out in the offline world, and equally, that populism was one of many lenses through which this might have been approached. Further work that explores the rise of intensely digitally mediated populist rhetoric in the relationships between healthcare providers as experts, and ordinary citizens as lay users, would benefit from the rich diversity of methods available to communication scholars. Surely, being present at the small but nonetheless relevant offline protests happening across the country, spending time and resources through in-depth face-to-face fieldwork exploring public perceptions of safety, security, risk and fear in patient-healthcare relationships in the context of parental anxiety (c.f. Gong, 2016), and expanding the site of ethnographically motivated online research to spill into the offline, would yield as

Fig. 4. An infographic from Charlie’s Army showing subsidiary groups developing.

Fig. 5. An instance of literary artefacts emerging out of the group.

Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005

R. Das / Discourse, Context & Media xxx (2018) xxx–xxx

many findings about the unfolding roles of mediated populism in lay health communication, as would more quantitative, data scraping, multi-sited methods in the world of the online. This kind of work, I suggest, bears direct implications for a range of fields, including the study of mediated populism in the context of a rapid rise of the right in Europe and America, health communication including e-health studies which has a long and rich history of investigating the supportive role of online patient communities which are increasingly at the centre of attention in terms of providing patient support in times of austerity, and computer-mediated communication as it advances its scholarship on mediated parenting and parental anxiety in an increasingly digitally mediated world. Author note Ranjana Das is a senior lecturer at the University of Surrey and Director of the research consortium CEDAR, funded by the Arts and Humanities Research Council, UK. She writes about audiences and users in the context of media transformations and has parallel research interests in digital media, maternity and parenting. Her research has been funded by the AHRC, the British Academy and the Wellcome Trust. References Albertazzi, D., McDonnell, D., 2008. Introduction: The sceptre and the spectre. Twenty-first Century Populism. Palgrave Macmillan, London, pp. 1–11. Armstrong, N., Koteyko, N., Powell, J., 2012. ‘Oh dear, should I really be saying that on here?’: issues of identity and authority in an online diabetes community. Health (London) 16 (4), 347–365. https://doi.org/10.1177/1363459311425514. Bamberg, M., De Fina, A., Schiffrin, D., 2011. Discourse and identity construction. Handbook of Identity Theory and Research. Springer, New York. Bartlett, Y.K., Coulson, N.S., 2011. An Investigation into the Empowerment Effects of Using Online Support Groups and How This Affects Health Professional/Patient Communication. doi: 10.1016/j.pec.2010.05.029. Baym, N., 2000. Tune in, Log on: Soaps, Fandom, and Online Community. SAGE Publications, Inc., Thousand Oaks: United States, California, Thousand Oaks. doi: 10.4135/9781452204710. Bennett, L., Entman, R., 2001. Mediated Politics: Communication in the Future of Democracy (2001). Cambridge University Press, Cambridge. Blumler, J.G., Kavanagh, D., 1999. The third age of political communication: Influences and features. Polit. commun. 16 (3), 209–230. Bolter, J.D., Grusin, R., 1999. Remediation: Understanding New Media. MIT Press, Cambridge, Mass, London. Canovan, M., 1982. Two strategies for the study of populism. Pol. Stud. 30 (4), 544– 552. https://doi.org/10.1111/j.1467-9248.1982.tb00559.x. Canovan, M., 1999. Trust the people! populism and the two faces of democracy. Pol. Stud. 47 (1), 2–16. https://doi.org/10.1111/1467-9248.00184. De Cleen, B., Stavrakakis, Y., 2017. Distinctions and articulations: a discourse theoretical framework for the study of populism and nationalism. Javnost Public, 1–19. Escobar, A., Hess, D., Licha, I., Sibley, W., Strathern, M., Sutz, J., 1994. Welcome to Cyberia: Notes on the Anthropology of Cyberculture [and comments and reply]. Curr. Anthropol. 35 (3), 211–231. Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., Stern, A., 2004. Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. BMJ 328 (7449), 1166. https://doi. org/10.1136/bmj.328.7449.1166. Frank, A.W., 2000. Illness and autobiographical work: dialogue as narrative destabilization. Qual. Sociol. 23 (1), 135–156. Gong, Q., 2016. Children’s Healthcare and Parental Media Engagement in Urban China: A Culture of Anxiety? Palgrave MacMillan, Basingstoke.

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Please cite this article in press as: Das, R. Populist discourse on a British social media patient-support community: The case of the Charlie Gard support campaign on Facebook. Discourse Context Media (2018), https://doi.org/10.1016/j.dcm.2017.11.005