This article by Ranjana Das, senior lecturer at Surrey University.
A social media patient support group called Charlie’s Army on Facebook (#CharliesArmy on Twitter) has been in operation for the past year as the support page for a terminally ill baby with incurable mitochondrial disease at the centre of a legal battle between the Great Ormond Street Hospital and Charlie’s parents. As the court heard on 24th July, the parents have withdrawn their case for experimental treatment and accept that their son should be allowed to die with dignity, but their statements, and much of the tabloid press continue to blame the NHS, and GOSH for apparent delays but for which Charlie would apparently have had ‘a chance at life’.
The social media furore around the Gard case has been startling, and offers much to reflect on, in terms of the kind of public discussion and debate that has occurred around medical ethics, healthcare and the very role of the NHS in British public life. By employing some classic markers of populism, the ‘army’ has demonstrated a kind of ‘networked populism’ which has co-opted evidence-based debate into the territory of heightened, emotive responses between and across strangers. These have ranged from genuine anguish and expressions of sorrow, to the use of terminology from the Third Reich to characterise doctors, lawyers and clinicians, and to displaying overwhelming emotions of feeling at one with and attached to the real-time tweeting of court hearings, almost as though these were televisual narratives unfolding.
My research on the social media presence of this community has shown up some pretty classical markers of populist politics which individuals, most of whom very emotionally affected by Charlie’s case, have been displaying, and I argue that these findings hold implications for public relationships to healthcare that we now need to consider in a constantly mediated society. Populism has long been discussed as an ideology which posits an image of the forgone, or left-behind as the opposition to the establishment peopled by ‘the elites’.
The role of the media is key here of course. Kramer’s use 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.”
It is precisely this that the social media campaign around Charlie Gard has demonstrated.
First, the discussions show clear moral distinctions between in and out-groups, producing ‘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, often terming GOSH as Great Ormond Street Hell, rather than hospital. There have been frequent cries that the out-group (GOSH and the judiciary) are “holding Charlie hostage”, or condoning the “disposing of the disabled”
Second, there has been a sustained and often evidence-free blame attribution to maintain these moral distinctions, ranging from accusing clinicians of administering morphine through callous design, to vague and general allegations of meting out ‘the death penalty’.
Third, there has been a consistent use of anecdotes to reject professional expertise. In response to complex conversations around head measurements and brain scans, people who have never met the baby have photo-edited social media pictures of him for the judiciary to “see from pics how he has grown”; group members insisting that what the professionals recognise as swelling and oedema on the terminally ill baby is just that “he is a chunky monkey”.
Fourth there has been a steady circulation of headlines and stories from well-known populist media sources, other sources being dismissed as ‘hate’. Here too, stories are mediated selectively, filtering out accounts that align with the judiciary or medical professionals’ views.
Fifth, the sporadic but nonetheless critical involvement of populist public figures in the form of sound bites or tweets have been repeatedly mobilised by the group to aid a case ‘against the stripping of parental rights’. These interventions have supported the idea that the NHS system of healthcare, and GOSH’s commitment to put the rights and interests if the child ahead of the parents, or indeed separate from the parents, makes NHS hospitals a frightening and terrifying places to be at.
Sixth, a climate of extreme like-mindedness has been fuelled by the ongoing maintenance of heightened emotional registers deriving energy from stories of personal struggles, shared by parents of critically ill children, or children who have been critically ill in the past – in the vast majority of cases from completely unrelated medical contexts. These personal anecdotes have had little if any scientific bearing to the case but have had monumental emotive significance.
And finally, the core architecture of social media platforms like Facebook has been appropriated through strict gatekeeping strategies so that even signing up to the Facebook group is contingent on answering positively to 3 questions about supporting and circulating this very specific stance on the case. Dissenting comments are branded trolling and the poster blocked.
So, what are the implications of this? The demonising of social-democratic institutions and free at the point of use healthcare seems to have fed out of and fed into populist politics as we have seen unfolding for the past years on both sides of the Atlantic.
Underlying populist rhetoric in the UK, is an ongoing climate of critical opinion against the public services including the National Health Service, 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.
Setting aside the ethical considerations arising out of this case around parental rights versus 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.
This article by Ranjana Das, senior lecturer at Surrey University.