Public Engagement and Events Officer, Sarah Hall, writes about facetransplant patients and social media. In this blog, Sarah explores the familiar narratives that circulate in the media, and argues that the primary voice should be restored to the patients themselves, giving them control over their own narratives.
Diminishing their Voices: Face Transplants, Patients, and Social Media
A video showing a woman inside a spider monkey enclosure at El Paso Zoo, Texas, started circulating on social media in late May 2021. The woman allegedly broke into the enclosure to get a video of her feeding the monkeys Flamin’ Hot Cheetos. She did so for her social media channels. The video predictably gained a lot of attention, much of it negative. Commenters decried the woman’s reckless disregard for her own and the animals’ safety. These reactions are familiar to those of us on social media. Whether because of the relative anonymity that it affords, or because we are so strongly encouraged to share our opinions on any given issue, we are used to witnessing, feeling, any maybe even contributing to waves of collective outrage. But such moments are fleeting, and the outraged crowd will flock to a new issue before long.
Social media is core to my work on AboutFace. The Institute of Historical Research’s History Labs+ recently invited me to speak about my work in this area. Namely, on how we present sensitive histories on our social media channels. Over the past six months I’ve come to realise that social media is capable of being far more than a tool for disseminating research. Additionally, it can be a space in which to conduct research. A valuable place to connect with trends, conversations, and public feeling.
It was while looking for recent tweets mentioning face transplants that I came across the video of the woman in the spider monkey enclosure, and the vitriol that followed it. I noticed that a number of angry responses mentioned Charla Nash. Nash (pictured) received a face transplant in 2016, after being brutally attacked by her friend’s pet chimp in 2009. Tweeters drew parallels between the real life attack and the potential for a repeat occurrence. However, few actually named Nash. Comments instead mentioned ‘the woman overseas who needed a face transplant’. One referenced what happened to Nash indirectly, writing ‘I see a face transplant in her future’.
Unusually, a number of replies came from British authors, who may have recently been reminded of, or learned about the event for the first time in a recently published Daily Star article. The article presented a graphic description of the attack, including audio of the 911 call made by Nash’s friend.
The news of Nash’s attack circulated widely in the US when it happened. And follow up coverage shared news of her face transplant. But coverage in the UK was limited to a few sensationalist pieces in the tabloids, while the broadsheets focused on surgical innovation. There is likely a link between the publication of the Daily Star article and the references to Nash’s attack in tweets from British authors. Tweets largely focused on the event, on the chimp, not on Nash herself, echoing the tone of the article.
Face transplants receive diverse treatment in social media. From flippant remarks to government conspiracies, fascination to condemnation and mockery of the aesthetic outcomes. Stories such as Nash’s circulate in public discourse according to familiar scripts. They are presented like films, featuring protagonists and antagonists, and readers treat them accordingly. Both social and news media present a fragmented view of reality, distancing audiences from the actual trauma of events. This process is exacerbated by the fact that most face transplant recipients are rarely the protagonists in their own stories. For Nash, people remember the chimp, Travis, before they remember her. They remember the attacker, not the attacked. If you Google ‘Charla Nash,’ the first result is the Wikipedia page for Travis, which remembers him both as perpetrator of the attack and tragic ‘child star.’
Contributing to this is the plurality of online discourse. Nash’s story, no longer simply her own, has been hi-jacked by multiple different parties. Just as some news outlets have used it to hail the victories of the surgeon leading her treatment, others have used it to mourn the tale of a wild animal raised in captivity. On social media, it circulates as a warning, a lesson against reckless contact with animals. Not long ago, it was employed to mock the people who had responded to a YouGov survey, claiming that they would beat a Chimpanzee in a fist fight. 17% of respondents answered that they would win. In these public spaces, Nash’s story is not her own, despite her efforts to present her own narrative.
A fixed moment?
When the media, hospitals, and surgeons share news of completed face transplants, naming the patients, they catapult them onto the world stage, and directly into the public eye. Instantly, these patients’ stories are available to be picked up, claimed, shared, and transformed by others. Patients become supporting characters in other stories. I even find myself asking: were they were ever presented as something more? At AboutFace, we are concerned about this process.
Face transplant patients are patients for the rest of their lives. There is no final ‘healed’ state, where they will no longer need medical care to monitor the donated tissue for signs of rejection. They may even have to undergo further surgeries to improve the function of their new face. But these are not the stories that are presented to the public. The people who continue to make passing, flippant remarks about face transplant, are presumably not aware of the ongoing challenges that transplant patients face. But there is no good reason that they should not be made aware.
There is a sense, almost, that the moment the patient was presented to the media, their story became fixed in time. And it is that moment, that memory, that holds pride of place in the public consciousness. That is the moment that circulates periodically on social media, sitting below the surface until familiar details emerge in current events or conversations. Even then, it is sensationalised. These patients, who did not choose the spotlight, have been given it nonetheless.
It’s notable that the people referring to Nash’s story online rarely know more than the most basic details of her story, and even these details are not always accurate. As these narratives are picked up and reframed to suit the story being discussed, they take on new life. But what happened to the patient’s story in the process?
With the distance afforded by the internet, social media users are removed from the reality of the people whose stories they co-opt. Face transplants can, in this space, continue to exist as both medical miracle and science fiction, and everything in between. The patient almost becomes irrelevant in the effort to prove a point, make a joke, or impress with a display of knowledge. But these narratives are still important to AboutFace, because they provide insight into public perceptions of face transplant. As an experimental procedure, where fewer than 50 have been performed worldwide, face transplants are still not common knowledge. We seek to understand what people know, what they want to know, and how we might contribute to more productive narratives.
In this process, social media becomes an important research tool. We can quickly tap into the swift moving debates, opinions, and currents of public opinion. In few other spaces are people so willing to share their innermost thoughts. The anonymity afforded them provides a safety net. The nature of social media means that thoughts are shared instantaneously, without the pressure of, say, an online survey where people may seek to impress or please a reader, rather than honestly sharing their thoughts. Social media remains a performance, but it is a performance to which we have a front row seat.
Providing a Voice
When face transplant patients are not the protagonists in their own stories, something is wrong. They do not have control over the way that their narratives are told. It is time for that to change. At AboutFace, we believe that restoring the patient to the centre of the narrative is essential if we are to fully understand face transplantation and its outcomes. We speak to patients, as well as the medical teams who work with them. In doing so, we seek to place greater attention on patient reported outcomes. This means identifying ways in which medical teams can more effectively record what it means to live with a transplanted face, and what success looks like. In doing so, we will give a voice to the people who are actually at the centre of the story.
Sarah is Public Engagement and Events Officer on the AboutFace project. She is an experienced events manager with significant experience in the Higher Education sector, and is interested in engaging with creative methods for disseminating academic research to different audiences. She manages the social media profiles for the AboutFace project, and offers training in social media use for ECRs. Sarah is a passionate believer in the benefits of interdisciplinary research and collaboration. She is also interested in academic outreach, and is committed to making research widely accessible to non-specialist audiences. Using a combination of qualitative and quantitative methodologies, Sarah’s research is interdisciplinary and engages closely with digital humanities.