Going Public: Performing Dying in the Second Decade of the 21st Century

Abstract

It is now more than a decade since the death of celebrity television personality Jade Goody – a high water mark in public dying comparable to the watershed moment in public mourning marked by the death of Diana, Princess of Wales, a decade or so earlier. As Walter has noted in this journal, Goody’s very public and highly mediated dying will not be the last. With that in mind, this article analyses the sociological significance of public dying in the decade following Goody’s death – the ‘tens’ of the 21st century. It does so chiefly by focusing on a number of high-profile instances which gained significant media traction, using these to examine the ways in which dying is both performed and made meaningful in contemporary 21st century culture. The argument presented operates on the assumption, following Goffman, of life – and by extension, dying – as performance.

‘I’m stuck with that – “look at me, I’m over here, I’m dying.” It’s a performer’s attitude’.

(Clive James, BBC Front Row, 2018)

Introduction

Since the very public dying of Jade Goody from cervical cancer in 2009, first-person narrative accounts of living with, and dying from, cancer have continued to proliferate. Beyond published pathographies in book or epistolary form documenting lived experiences of illness and dying, there now exists a rich variety of first-person accounts available in a range of media – radio, television, podcasts, popular magazines, blogs, video diaries, and social media. As Walter (2009) has observed, this seemingly challenges the sequestration thesis within sociology, rooted in the assumption that death and dying in modernity have been comprehensively pushed behind closed doors and out of public view.

It also seemingly challenges sociological assumptions that illness and dying are a cause for embarrassment (Elias, 1985) and stigma (Goffman, 1963). More than this, it suggests that where confessional accounts of private and deeply personal experiences, including illness and dying, were once shocking and revelatory, they are now so widespread and commonplace as to appear almost banal, even trite. The cultural dynamics of contemporary culture are now such that the injunction to conceal has been inverted and replaced by the impulse to put ‘everything out there’, whether on reality television or through social media. In the ‘new normal’ of the 21st century, it now seems creditable to put the most discreditable information about ourselves into the public domain in the service of impression management.

Too extensive to list in full, the second decade (hereafter ‘tens’) of the 21st century has given rise to a plethora of first-person accounts of illness and dying. These chiefly include mediated accounts by well-known public figures and celebrities but also extend to ordinary people who achieve notoriety through their public sharing of experiences on social media. Having tracked pathographies over the last decade, this article analyses the sociological significance of a number of high-profile cases, examining what they tell us about contemporary culture. It does so by weaving these cases (from Christopher Hitchens at the start of the decade, through Jenny Diski in the mid ‘tens’, to Clive James at the end of decade, and others besides) into a thematic discussion based on emergent ‘family resemblances’ between the cases considered. This is followed by a discussion of the power implications resulting from the structural (in)ability of certain groups to curate their own dying and cultural afterlives.

Perhaps a measure of the banality of public dying in the 21st century is the shock generated by the deaths of celebrities whom we did not know were ill/dying because they did not reveal their diagnoses publicly. Singer-songwriter David Bowie, comedian Victoria Wood, and actors Alan Rickman and Helen McCrory are recent, UK born, exceptions to the tendency towards public dying.

New public dying

Public dying, much like public mourning (Walter, 2008), can be distinguished, ‘new’ from ‘old’. The latter refers to traditional, duty-bound public expressions of grief for a monarch or figure of authority, often based on hierarchy and deference; the former to spontaneous grieving for celebrities or public figures with whom members of the public have identified, and forged an affective relationship, but not necessarily met in person. Like grieving, dying in public is not new. Elias (1978), for example, has reminded us how common death was in the middle ages, taking place openly, in public; the dying routinely mocked by their survivors. Traditional deathbed scenes and ars moriendi tradition of devotional Christian literature instructing the dying on how to die well remind us also of a time when dying was both visible and publicly accessible. It is thus only in the modern age that death, like violence and other animal impulses, has been ‘confined to barracks’ as part of a civilising process (Elias, 1982: 238)

After a prolonged period of absence, theorised sociologically as sequestration (Mellor, 1993; Mellor and Shilling, 1993), and against which Jade Goody’s dying provided a hypothetical test (Walter, 2009), death, and indeed dying, are back, and appear to be ‘having a moment’ (Clark, 2018). Pushed out of sight and out of mind, medicalised, and confined to private spaces in modernity, death and dying in late/post/reflexively modern, information-based, consumer societies are highly visible and hugely accessible (Woodthorpe, 2010). What helps make them so is modern media, providing the tracks on which public dying runs and the platforms by which it is viewed. In this respect, a more precise term for describing the images, narrative accounts and representations of people in the throes of terminal illness is ‘public mediated dying’ (Penfold-Mounce, 2020a).

Technology in the 21st century has changed the way people mourn (Walter et al., 2012). It is also changing the way people die. The increased accessibility and portability of media have opened up new possibilities for sharing one’s experiences, extending inclusion to individuals and groups otherwise excluded from the traditional means of literary production, including those whose health is severely compromised but whose condition is sufficiently ambulatory so as to allow them to share their experiences using social media. Cancer dominates accounts of public mediated dying. With an extended, and sometimes very long dying trajectory, blogs, video diaries, and social media sites such as Twitter, Facebook, and Instagram provide unprecedented opportunities for sharing deeply personal experiences: from initial diagnosis, through daily updates on pain/pain management, treatment regimens and their side-effects, to valedictory messages to followers, friends, and people within a person’s social network.

While media interest in death, and dying in particular, is not necessarily new, what is new are the niche possibilities opened up by the proliferation of media. Sociological references to ‘the’ or ‘mass’ media now appear rather quaint in light of the ‘narrowcasting’ opportunities made available through the social media outlined above and video sharing platforms such as YouTube, which also permit online sharing and social interaction in the form of comments posted beneath videos by viewers.

The contemporary media ecology is marked in particular by a symbiosis between various media, new and old, mainstream and niche. In the context of public mediated dying, mainstream media may provide the major platform from where a person’s illness and dying are first announced – as, for example, in the case of UK journalist Steve Hewlett, who used his cancer diary in the Observer newspaper and BBC Radio 4’s PM programme to talk openly about his cancer. ¹ This is often then picked up and shared on other, less mainstream media (especially social media), which in turn may generate further traffic and ‘trending’ on social media sites. Alternatively, in the symbiosis between contemporary media, mainstream media increasingly report instances of public dying that have their genesis and primary locus in more ‘narrowcast’ social media, which, once picked up and reported by mainstream news media, may generate further public interest as part of an ongoing reciprocal news cycle. The instances of UK vlogger Emily Hayward, who shared her dying on YouTube and Instagram, and US broadcast journalist Scott Simons, who charted his mother’s dying from her ICU (Intensive Care Unit) bedside via Twitter, are two examples that fit this category. Aspects of social life, including dying (and the experiences surrounding it) that were, in modernity, once experienced largely ‘backstage’ are clearly now increasingly performed ‘frontstage’ (Goffman, 1959).

Methods and rationale

The cases that form part of the analysis in this article are not exhaustive. They are nevertheless made up of instances of public mediated dying that gained significant media traction in the UK (and Anglophone world) in the decade spanning 2010–2019. Global media are today such that stories – including instances of public dying – that originate, or are first reported, in one national jurisdiction, often cannot be contained within it but are diffused and/or accessible to media users worldwide. Writing as a UK-based academic, the accounts considered here are taken from within the media orbit within which I reside. While media are today global, often transcending national boundaries, our ‘media surround’ is still, nevertheless, circumscribed by national jurisdiction (turning on my TV or radio will still, in the 21st century, provide nationally inflected news stories in ways that extend to the focus given to particular public figures who have ‘gone public’ with their dying).

Significance here is understood as accounts of public dying which, as media events, possess a certain magnitude by virtue of their intensity and ability to speak across temporal and locational boundaries (Kear and Steinberg, 1999: 2). Selected on the basis of their magnitude and media take-up, the cases considered here should not be mistaken as representative or reflective of all communities and nationalities’ experiences of (public mediated) dying – though they do nevertheless approximate representativeness of coverage, drawn as they are from a wide range of well-established media sources. Instances of public mediated dying in the UK in the 21st century – especially those reported in conventional/mainstream media – lack ethnic diversity: they are overwhelmingly white, predominantly female and reflect historic and continuing inequalities of power and resources (Hamilton et al., 2022).

The cases discussed below come from the author’s own research and collection of news (and social) media stories of public dying archived over the last decade (2010–2019). Some of these (including Christopher Hitchens, Jenny Diski, and Steve Hewlett) are drawn from previous research using detailed and ‘granular’ textual analysis (e.g. Brennan, 2018, 2022). Others are discussed using a combination of secondary media reporting of persons who have shared their experiences of dying publicly, their first-person interviews with mainstream media, and their direct messaging via social media. Taken together, they provide a panoramic sweep as part of a socio-cultural analysis of public dying in the second decade of the 21st century. To be clear, this article does not deploy standard sampling techniques but is a qualitatively oriented/theoretically framed article in which the cases considered are interwoven within a thematic discussion.

The cases considered are also deliberately limited to persons who died within the ‘tens’, even though their illness trajectory – and point at which they first began narrating their experiences of illness/dying publicly – may have begun before the turn of the decade. In many cases, the discovery of symptoms/onset/diagnosis of illness (often reported shortly thereafter) marks the beginning of public mediated dying and culminates either in death or inability to ‘perform’ one’s dying publicly due to weakness/ill health. Even where the discovery of symptoms/onset/diagnosis of illness does not mark the point in time at which the public performance of dying begins, in accounts told retrospectively, it often provides a significant ‘moment’; a transitional/transformational point within the narrative by which one passes from the ‘kingdom of the well’ into the ‘kingdom of the sick’ (Sontag, 1978: 3).

Time (and the selection of cases from the ‘tens’) is significant here because it allows us to track changes in the mediated forms by which people narrate and perform their dying in technological-culturally calibrated conditions. While many of the instances of public mediated dying discussed below do not necessarily originate in, or have social media as their chief locus, they nevertheless rely upon social media for their circulation and distribution within other media such as TV, radio, and newspapers. The ‘tens’ are significant here because, while social media platforms such as Facebook, Twitter, and YouTube were launched in the ‘noughties’ (2000–2009), they came of age, achieved peak popularity/usage, and have undergone upgrades in functionality – such as the capacity for live streaming – in the ‘tens’ (only Instagram and Tiktok of the current crop of major social media platforms were launched in the ‘tens’).

Identity, the body and performance of self

Serious, long-term illness (including dying) disturbs our sense of self, our assumptions about the world, and our place within it. In sociological terms, such disturbance has been theorised as ‘biographical disruption’ (Bury, 1982) provoked by a ‘critical situation’ (Giddens, 1979) in which a person’s taken-for-granted expectations about the life course and the social roles they are expected to play have been cast into doubt. Illness and dying disturb our ‘ontological security’ (Giddens, 1991), and with it our ability to find meaning in the world, often in ways that are directly related to identity. Added to the sense of ‘social fading’ that often accompanies serious illness and dying, as a person’s participation and presence in everyday social life becomes diminished (and potentially erased from public memory), is the risk that a person’s identity may itself become ‘mortified’ (Goffman, 1961, 1963), subsumed under a new master status or metanarrative in which a person comes to be defined by their illness/dying.

‘Going public’ with one’s illness/dying (especially by those already in the public domain) may help resist such victim status by normalising illness/dying as an everyday part of life. It may also provide an antidote to social fading by enabling continuing bonds (Klass et al., 1996) between the famous and their publics, delaying/preventing a ‘second death’, while allowing for their lives (and deaths) to live on as part of the cultural afterlives of death (Englund, 2022; Penfold-Mounce, 2018, 2020b). ² The extent to which one’s posthumous identity is secured is not, however, universal but clearly indexed to one’s access to various forms of capital (symbolic or otherwise) that reflect inequalities of gender and class in ways related to the body (Penfold-Mounce, 2020b).

Sociological discussions of illness and dying are prefigured by considerations of the body. Not only does the body place material limits on human experience (Seale, 1998), but the illness and pain sometimes visited upon it threaten a separation of body and mind in ways that are perceived as enemies of the self, having betrayed a person’s biography founded upon good health and wellbeing (Howarth, 2008: 181). Writing, talking about, and what we might call collectively, ‘performing’ (Goffman, 1959) illness and dying in public – albeit in mediated ways – are part of cultural discourse (they are by their very nature, discursive) and may help restore and even enhance a sense of self and identity imperilled by ontological insecurity. Public performance (as discursive practice) in the face of illness/dying may also serve as an attempt at asserting agency, mastery, and control when both are in short supply, for resisting a loss of self (Charmaz, 1983). Aggressive treatments like chemotherapy are notorious for robbing the body of energy and diminishing a sense of self.

Understood as performance, public mediated dying of the sort discussed here can be seen as an attempt to close-up the gap between a person’s identity and others’ perception (and designation) of them as cancer victims, following a diagnosis of cancer. Performance as it is understood here does not simply amount to narcissistic or self-obsessed bids for attention or publicity – characterised caustically by Julie Burchill as the ‘I’m dying I am’ genre or by Decca Aitkenhead as ‘emotional pornography’ (Small, 1998), but can be understood as part of the ‘body work’ (Shilling, 1993) required to resist the separation of self and social identity precipitated by illness/dying. This fragmentation of identity precipitated by cancer may lead to attempts to preserve the fabric of social identity threatened by illness or lead to attempts to refashion identity in the face of annihilation.

The case of Clive James, Christopher Hitchens, Jenny Diski, and Steve Hewlett (among others) represent the former: attempts at ‘writing’ or ‘speaking through’ the pain of cancer in ways consistent with their personal and professional identities as writers; while the cases of UK family doctor, Kate Granger, and UK personal trainer and vlogger, Emily Hayward, suggest that cancer served as a stimulus to the refocusing of goals and repurposing of identity.

Granger, a general practitioner (GP), from East Ardsley in Yorkshire, used the liminal period between her diagnosis with a rare form of cancer and eventual death in 2016 to not only speak publicly about her experiences but also to fundraise for a local cancer charity (raising £250,000 for Leeds Cancer Charity Centre) and launch a campaign, ‘Hello, my name is’, to help reform and improve ways healthcare professionals treat patients with terminal conditions. ³ Granger was treated brusquely by a doctor who informed her that her cancer had spread but did not introduce himself or make eye contact with her. Granger’s campaign and public dying gained significant traction via social media, where, using the hashtag ‘Hello my name is’, she garnered 47,000 followers, winning the backing of 400,000 doctors, nurses, therapists, and porters across 90 National Health Service (NHS) organisations (BBC News, 2015).

Chronicling her cancer journey by posting videos on YouTube and Instagram, Hayward shared her intimate experiences of diagnosis, treatment, and wider experiences of pain mixed with positivity – of medical appointments, chemotherapy, and regular updates for followers on social media. ⁴ Hayward’s overriding message in approaching illness/dying was one of positivity and defiance; her Twitter bio was ‘Full time cancer fighter, vlogger, fitness fanatic’ (https://twitter.com/emilyhaywardpt).

Frames and discourses

A useful framework for understanding public mediated dying in the 21st century lies in the sociology of Erving Goffman and social theory of Michel Foucault. Goffman’s (1974) development of frame analysis helps to understand the ‘frame’ through which public dying is experienced and perceived; namely, in this respect, the public dying frame. As a means of organising social experience, ‘frames’ serve as both guide to action and framework for understanding a social phenomenon, event or form of social interaction, telling us how to perceive, and behave within, a particular social situation. Performance in the public dying ‘frame’, again using Goffman’s ideas, is always reliant upon a supporting cast of others – in this instance, journalists, TV and radio interviewers (who engage the person occupying the dying role in a dyadic relationship), as well as the wider public audience who support the performance through positive feedback and messages on social media.

Foucault’s work on the other hand helps us to understand the linguistic tropes associated with the public dying ‘frame’; to situate the death talk underpinning narratives of public dying within a particular linguistic genre or discourse. Discourse of this sort is, in a very literal sense, a conversation (Thompson and Owen, 2017); and conversations like this, about the end of life, have been encouraged in the last decade or so as part of a policy agenda in which talking about death and dying have been actively promoted by charity/campaign groups such as Dying Matters: as ‘good for our wellbeing, [. . .] good for those around us, and [. . .] good for society’ (www.hospiceuk.org). ⁵

Discourse of this sort, in a Foucauldian sense, can also be seen to operate in a more insidious way, serving to regulate and authorise particular styles of dying while disavowing others. Could it be that certain styles of dying are discursively established – normatively – as if representative of all dying, thereby creating a ‘regime of truth’ around dominant forms of public mediated dying? Many of the instances of public mediated dying in the ‘tens’ speak explicitly about ‘normalising’ death and dying, about removing the stigma, silence, fear, and misapprehensions surrounding it. But could it also be, that in attempting to ‘normalise’ dying, other forms of less heroic and sanguine dying – that is, dying that does not conform to these ideals – are marginalised and closed down as possible alternatives? ⁶

There is a parallel here with the danger identified by Walter (1996) in terms of grieving: that particular styles of grieving, at particular moments in historical time – whether involving a detachment from or ongoing relationship with the deceased – become established as ‘clinical lore’ in ways that dictate how people should grieve; and in this instance, how they should die. There is another sense in which Foucault’s ideas are useful here – and that is in helping us to understand writing, talking about, and performing dying publicly as a technology of the self; a means for achieving better self-understanding and self-care.

Confronting cancer

First-person accounts of illness and dying in the ‘tens’ are dominated by cancer. My analysis of public mediated dying in this period reveals a recurrent theme: namely, an explicit attempt to confront cancer and the status it has acquired in contemporary culture. Much of this clusters around resistance to the prevailing imagery of cancer, the fears it generates in the public imagination, and sense of passivity associated with it – especially that of cancer victimhood. In performing public mediated dying, we can see here how the dying role – as distinguished from the sick role (Parsons, 1951) from which people are expected to recover (but in the dying role cannot) – is reframed in ways both positive and consistent with the dying person’s identity. Public dying functions here as inspirational example and transferable public duty (Steinberg, 2016b).

In lieu of religious frameworks to interpret the meaning of death and dying in contemporary society (Walter et al., 1995), media continue to play a significant role in helping to frame how these deaths should be understood. But they do not do so alone. Rather, in the new media ecology, media (both new and old) work in combination with the performative agency of individuals themselves who, like the ‘citizen journalists’ that new mobile technology first helped usher in the ‘noughties’ of the 21st century, contribute and shape media content.

Several of the pathographies considered here from the ‘tens’ make confronting cancer an explicit part of the way their dying is performed. In a valedictory interview given to the BBC in 2010, writer, journalist, and well-known controversialist, Christopher Hitchens, told Jeremy Paxman that, against the bogus cures and myths with which it has been propitiated, ‘he had set his face to demonstrating’ that cancer is ‘a malady like any other that will yield to reason and science – and that’s what I’m trying to spend my time vindicating’ (BBC Newsnight, 2010). ⁷

Hitchens takes issue with the term ‘battle’, a well-worn media trope used to describe people suffering from (‘battling’) cancer. Instead, Hitchens insists that cancer feels more like it is battling him (and for the most part, not like fighting at all), describing the passivity that comes from the ‘kill or cure’ venom of chemotherapy mainlined into his veins every few weeks. Like Hitchens, who expressed his frustration with the hackneyed terms for describing living with cancer, many others who performed their dying publicly during the ‘tens’ share their frustration with the language and discourse surrounding it.

Kate Granger, who published two pathographic books before her death in 2016 (The Other Side and The Bright Side), used Twitter to confront cliched metaphoric talk around cancer, tweeting, for example, about how ‘cancer is a journey not a battle or fight’. ‘Dark’ (or ‘gallows’) humour provided another tactic by which Granger confronted cancer, using it to disarm the terror surrounding cancer and the fear of dying. In common with other instances of public mediated dying in this period, Granger’s confrontation with cancer involves reframing it by attempting to remain positive throughout her cancer ‘journey’.

Death positivity is also evident in the public mediated dying of former UK New Labour strategist, Philip Gould, who, in a short 8 minute film ‘When I Die’ and pathographic book, When I Die: Lessons from the Death Zone, spoke candidly about freeing himself (and by extension, others) from the fear of death by reframing its meaning as something positive. ⁸ American-based British neuroscientist, Oliver Sacks, also spoke publicly and in positive terms, about his dying, reframing the loss of sight in one eye following his diagnosis with uveal melanoma as – quite literally – giving him a new perspective on life. ⁹

We also find ‘confrontation’ with cancer in the public mediated dying of UK journalist and broadcaster, Rachael Bland, who, in chronicling her experiences of breast cancer over a 2-year period, claimed that her chief aim in talking about cancer was to help demystify it: ‘to punch it square in the face’ (Hayward, 2018). ¹⁰ The BBC Radio 5 podcast ‘You Me and the Big C’ she co-hosted with Deborah James ¹¹ and Lauren Mahon (both of whom have also had cancer) was part of an attempt to normalise cancer by creating a safe and supportive space for talking about it in ways that might help others re-frame it in more positive ways, and in so doing, change wider perceptions and the public conversation about it. Attempts at ‘normalisation’ here extend to the aim of creating ‘a space where you feel like you’re sitting down with girls like you, having a cup of tea, talking about it like it’s Eastenders’ (Hayward, 2018).

‘Normalisation’-as-confrontation is also evident in the public mediated dying of UK actress, Lynda Bellingham, who in TV appearances, newspaper interviews, and her pathographic book, There’s Something I’ve Been Dying To Tell You, sought to challenge the stigma surrounding colorectal cancer (with which Bellingham was diagnosed) and wider inflammatory bowel diseases. ¹² Here again, humour, this time scatalogical, is used to confront the stigma and embarrassment that lead to silence around the subject.

Like Rachael Bland (on whose podcast she appeared as a guest), personal trainer and blogger, Emily Hayward, sought to confront cancer by remaining defiant in the face of her illness, helping ‘to put two fingers up to cancer’ (Moore, 2019). Her informal, matter-of-fact, and ‘up close and personal’ approach to cancer helped generate a community of followers, many of whom were themselves living with or had survived cancer, and were seemingly able to take inspiration from her predominantly upbeat messages posted on social media.

Helping others, helping oneself

The language used by pathographers who have narrated their experiences of illness and dying in the ‘tens’ is frequently that of helping others. New Labour architect, Philip Gould, spoke of facing down his fear of dying by writing/talking about it in ways that might help others going through a similar plight. Kate Gross, also a UK political advisor, who died from colon cancer in 2014 aged 36, shared her experiences of dying in The Times, via her blog, and in her book, Late Fragments: Everything I Wanted to Tell You About This Magnificent Life, with the express intention of helping others understand what it means for a person to ‘die before their time’ and how to engage with people (and their families) who are dying. ¹³

Steve Hewlett’s candid accounts of his experiences of esophageal cancer, especially his experiences of cancer care, can be understood as an attempt to help others navigate the labyrinth of NHS care. Listeners to Hewlett’s interviews with presenter Eddie Mair on BBC Radio 4’s primetime news programme, PM, learned valuable lessons, including advice that active involvement in one’s own treatment produces better care. Hewlett’s interviews appeared – if only anecdotally and in the short term – to produce an equivalent of the so-called ‘Jade Goody effect’ (Casey et al., 2013; Marlow et al., 2012), helping encourage an uptake of middle-aged men presenting themselves for medical attention with gastrointestinal symptoms in much the same way as Goody’s public dying from cervical cancer in 2009 helped see an uptake of cervical smear tests among young women.

Taken together, the net effect of these pathographers may be, as Goody before them, to serve as informal death educators (Walter, 2009), providing valuable insight into what dying is like for people with no experience of it, while simultaneously validating experiences that resonate with people who are themselves dying or may be caring for people who are dying.

Many of those who have narrated their dying publicly have couched their experiences as imparting valuable ‘life lessons’ to others (in ways perhaps not lost on publishers keen to monetize their experiences in the form of book sales). Such life lessons include the tweets (and later book, Unforgettable: A Son, A Mother, and the Lessons of a Lifetime) of US writer, broadcaster, and National Public Radio (NPR) host, Scott Simon. ¹⁴ Simon made headline news when he tweeted from the bedside of his 84 year-old mother, Patricia Lyons Simon Newman, following her admittance to the ICU of a Chicago hospital in 2013. Simon’s tweets included ‘life lessons’ on the importance of spending time with the dying and accompanying them on their ‘journey’, both of which appear to serve as an antidote to the loneliness and sense of embarrassment of being in the company of the dying described by Norbert Elias (1985) as a feature of the civilising process.

Such ‘life lessons’ also include the encouragement and advice to reach out to people who are dying by writing to them, because, as Christopher Hitchens put it in his valedictory interview with Jeremy Paxman for a BBC Newsnight ‘special’, ‘you’d be surprised . . . how much difference it can make [and it’s something] . . . I regret not doing . . . more often myself’ (BBC Newsnight, 2010).

Helping others is also manifest in campaign work (such as Kate Granger’s efforts to transform the ways in which dying people are treated by healthcare professionals), in attempts to normalise attitudes towards stigmatised conditions (in, for example, Lynda Bellingham’s openness around colorectal cancer), and in efforts to create a ‘safe space’ in which to talk freely about cancer, pain, and (the fear of) dying (as Rachael Bland attempted to do in her podcast ‘You Me and the Big C’).

In helping others, one may also be helping oneself. Publicising one’s own illness (and dying) may be part of an attempt to find a donor (as in the case of UK journalist Sue-Lloyd Roberts, whose public dying was also an appeal to find a stem cell donor as a cure for her myeloid leukaemia). ¹⁵ Talking about one’s own experiences by people facing death or caring for others who are dying may also bring opportunities for self-reflection; opportunities that arise not simply through vocalising one’s experiences but in and through dialogue with others (and the opportunities this provides for reflection). Third-party reflection on others’ dialogue (such as Steve Hewlett’s radio interviews) may also provide insight into one’s own experiences in ways that cannot necessarily be found in intimate relationships in which we are involved (see Brennan, 2022). More than this, talking candidly about one’s own dying can perhaps also be understood, in Foucauldian terms, as parrhesia (or frank-speech), in ways that reveal both the intimate connections between self-understanding and self-care (Foucault, 1986), but also the moral and social obligations to speak the truth (Foucault, 2001) – in this instance, about the lived experience of illness/dying.

Dying with purpose

We have seen already how illness and dying disturb biographical continuity (Bury, 1982) and threaten ontological security (Giddens, 1991). In ways that are of profound sociological interest, the liminal period between a terminal diagnosis and death can be understood as providing a crisis of meaning by disrupting everything a person may have taken-for-granted, including one’s health, sense of identity, and general purpose in life. Religion was once, and for many still is, a primary source of meaning in the face of death, helping to transform it from an event that negates meaning into something meaningful. For sociologists like Max Weber, religion was understood for its capacity to both generate and sustain meaning (Woodhead, 2001) as part of the ‘theodicy of suffering’ (Berger, 1963).

For those considered here who, in the second decade of the 21st century, have given public voice to their experiences of dying, religion features very little in their accounts. What does, however, appear to give meaning to their experiences is writing, speaking about, and performing their dying. For those already in the public domain (as writers, journalists, actors, senior political advisors), performing one’s illness/dying in this way is not only a means of attempting to exert agency and control in the face of a diagnosis and treatment marked, overwhelmingly in the case of cancer, by passivity and loss of control, but a way of maintaining a thread of continuity with one’s personal/professional identity. Work, like religion and health, provides an ‘anchor point’ for biographic continuity (Pascal and Sagan, 2017).

As a vocation, the professional identity of writers (and atheists), like Jenny Diski and Christopher Hitchens, appears as a guiding force that is drawn upon to help give meaning to an event that, for them (as atheists), is utterly devoid of meaning. In her public mediated dying, Diski spoke about her use of humour as a means of dealing with the banality of death and the existential rage generated by the meaninglessness of non-existence. ¹⁶ In an interview with David Schneider for the BBC Radio 4 programme One to One first broadcast in November 2015, Diski explained how she understood the comfort provided by religion for people of faith but found it ‘bloody distressing’ that she herself could not make sense of it as a non-believer. Instead, Diski claimed that her writing provided a ‘solution’ to the anxiety generated by the thought of death (BBC, 2015). For a writer like Hitchens, who had forged a reputation as a celebrity atheist (one of the ‘four horsemen’ of ‘militant’ atheism, together with Richard Dawkins, Daniel Dennett, and Sam Harris), his public mediated dying provided the opportunity to reaffirm his atheism in face of the ultimate test, death itself; going on public record (notably in interviews with Anderson Cooper for CNN and Jeremy Paxman for BBC Newsnight) to dismiss any rumours of last-minute deathbed conversion.

For those already in the public eye, the prospect of illness and dying raises the spectre of social fading and social death; a mortification of the self that, in philosophical terms, threatens their Being-in-the-World (Heidegger, 2000 [1927]). Dying publicly, in the full glare of media publicity is, for showmen like Clive James (whose extended period of dying between diagnosis and death spanned almost a decade), entirely consistent with the ‘performer’s attitude’ he himself identifies and ‘owns’ in a BBC Front Row Special interview with Professor Mary Beard broadcast in December 2018. ¹⁷ Together with lesser known individuals, such as Kate Granger and Emily Hayward, dying is repurposed (as ‘death positivity’) in ways that give strength and inspiration to others, while at the same time giving new meaning and purpose to pathographers in their being-towards-death (Heidegger, 2000 [1927]).

An analogue of more recent existentialist thinking on dying – not as an ending but as a purposive beginning – can be found in Ricoeur (2009). In the existentialist philosophical tradition, self-knowledge is born in the realisation of one’s own mortality. Seen in this light, the intense creative activity of those who – in the liminal period between terminal diagnosis and death – perform their dying publicly, speaks to a rejection of a moribund existence in favour of living fully, in the now, and up to the moment of death. It reflects not only a ‘jouissance for life in the face of death’ (Putt, 2011: 240) but a more clearly defined sense of purpose in which life is experienced more vividly in the firmament provided by knowledge of one’s own non-being. Those who narrate their experiences of dying publicly routinely talk of feeling more alive in dying than in life itself; as if giving testimony to the metaphoric notion of how a candle burns brightest just before it is extinguished.

Community, support and online pushback

By virtue of being openly shared, personal experiences of illness and dying become public property. In so doing, they invite the possibility of support, but also risk inviting criticism and abuse, especially online. Among those who have shared their experiences publicly, Christopher Hitchens, Steve Hewlett, and Rachael Bland have all spoken of being overwhelmed (and gratified) by messages of support from well-wishers, contributing to a perception of community – whether imagined (Anderson, 1983) or real. By the same token, they have also been subject to online criticism and abuse, sometimes vitriolic. Bland (2018), for example, was the victim of online trolls who berated her for not fighting her cancer hard enough.

Messages of support from well-wishers can provide comfort, solace, and strength upon which people in the throes of illness can draw. The support provided to individuals whose dying is publicly mediated comes often from individuals whom the dying person does not know and has never met. There are again clear parallels here between public dying and public mourning, not least the social connections and networks that extend over and beyond face-to-face relationships, but also in terms of the antipathy and pushback that public dying, like public mourning before it, generates.

In its milder forms, criticism of public mediated dying may stem from antipathy towards the de-privatisation of emotion and de-sequestering of issues once closeted, including personal experiences of illness, dying, and grief. Such opposition to public displays of emotion, especially for those not known to us personally through a face-to-face relationship, was relatively widespread, though not particularly well represented in media discourse, following two watershed moments in public mourning in the UK towards the end of the 20th century: the Hillsborough disaster of 1989 and death of Diana, Princess of Wales, in 1997.

Public reaction to Scott Simon’s tweets during his mother’s lingering death in a Chicago ICU in 2013 provides a particular example of such pushback. Simon’s deathbed tweeting provoked the ire of many, especially in the comments sections of online newspapers in which his tweets were reported. In the talkback sections of online newspapers, many readers objected, claiming that Simon’s tweets were ‘selfish’, ‘exploitative’, and ‘narcissistic’, accusing him of turning a sacred and deeply private moment into public spectacle. One reader asked sarcastically: ‘Couldn’t he have kept a private diary?’ (Mail Online, 2013). Others doubted how someone so involved in providing a running commentary on his mother’s dying on Twitter could be fully present in the moment of her dying/death.

In its more extreme forms, opposition to public dying is directed less against detraditionalization, and the tendency towards the public sharing of things once considered private, than it is towards the individual doing the sharing. Online trolling of this sort accompanied Christopher Hitchens’ public dying. As controversialist, contrarian, and public atheist, Hitchens’ dying attracted the unwanted attention of Christian conservatives (especially in the USA), whose messages to him suggested his cancer of the oesophagus was divine punishment for his atheism – direct punishment visited upon the organ with which he was perceived to have blasphemed.

While it is not within the scope of this article to provide explanations for the online trolling of individuals who share their experiences of dying using various media, it is enough to offer a few preliminary observations. First, that some of the opposition to public mediated dying comes from a lag in public sensibilities outpaced by wider societal shifts and changes in technology that alter how we die and mourn (Walter et al., 2012). Second, that some trolling of the dying, while by no means justifying it, owes much to the politics or position that they may have taken on various different issues during their lifetime. As in the case of Hitchens, as atheist, the dying are spared little compassion by their detractors. Third, that people who publicly share their experiences of dying, especially from cancer, may invoke criticism and trolling for a perceived failure to tackle the cancer aggressively enough using conventional medicine or from a failure to adopt alternative remedies and ‘cures’.

Narratives of illness and dying

First-person, public mediated accounts of illness and dying are typically organised along narrative lines. As a medium and genre of communication, the formal properties of narrative have been comprehensively theorised, including the tendency to recapitulate past experiences in and as a temporally sequenced order of significant events (Labov, 1972; Ricoeur, 1984). Stories are always told for a reason and with particular intent. This may be to persuade or create a particular impression in others or – as a technology of the self (Foucault, 1997) – to achieve coherence (Bruner, 1987; Nash, 2005), biographical continuity (Bury, 1982), and for creating and maintaining personal identity (Linde, 1993). Storytelling may also serve as a vehicle of meaning-making, helping make sense of traumatic experiences and what might otherwise be encountered as ‘an unbearable sequence of sheer happenings’ (Arendt, 1968: 104).

As a genre, most of the instances of public mediated dying discussed here share ‘familiar conventions of story and characterization’ (Cohan and Shires, 1988: 77). These typically include descriptions of falling ill and feeling that something was wrong (or ‘not quite right’); an epiphanic moment of diagnosis/receiving bad news; experiences of aggressive treatment (such as chemotherapy) and clinical trials; followed by the cessation of treatment and shift to palliative care once all others treatment pathways have been exhausted. Such narratives are routinely accompanied by humour and metaphor – as both coping mechanism and defence, and means of making sense of the senseless. Jenny Diski’s response to receiving a terminal cancer diagnosis, for example, was to quip that it was time to start ‘cooking the meth’ – a cultural reference to the popular television series Breaking Bad, and one, according to Diski, entirely lost on the consultant delivering the bad news to her. Metaphor, on the other hand, was deployed by Christopher Hitchens to describe his illness journey as a form of deportation and border crossing: from the land of the well to the land of malady (c.f. Sontag, 1978).

As we enter the third decade of the 21st century, we have reached a point now where the proliferation of narratives of public (mediated) dying has achieved critical mass. This is only possible in cultural conditions in which certain stories become permissible and where there is an audience willing to hear such stories. It is a far cry from the cultural conditions that gave rise to secrecy, collusion, and veiled exchanges between terminally ill patients, their loved ones, and healthcare professionals analysed in Glaser and Strauss’ (1965) ethnographic study of awareness contexts that shaped the experience of dying for many in the mid-20th century. For such stories to be told and heard requires both a fertile environment and support reflective of particular social and historical conditions (Plummer, 1995). There are perhaps parallels to be drawn here between the emergence of narratives of public dying and the ways in which the idea of the ‘homosexual male’ could only be inhabited as a lived identity because of new discourses of sexuality that surfaced towards the end of the 19th century (Bristow, 1995; Sedgwick, 1985).

In post-structuralist terms, discourse and narrative clearly have performative implications. For it is in telling, in the declarative speech act (Austin, 1976), that subjectivity is realised, bringing into being that which is spoken or named. Language in this sense is not neutral but helps produce rather than simply describe everyday life (Barthes, 1981). By extension, narrative and storytelling help summon and create a sense of self (Riessman, 1993). Here in the public dying narratives analysed in this article we see the realisation of identities through the performance of dying; in attempts to ‘own’ and ‘stand-up to’ cancer, and thereby create a new reality and conditions in which cancer can be talked about. Kate Granger and Emily Hayward provide examples in which identity is realised in and through the performative ritual of telling; while for writers and celebrities already in the public domain, performing dying provides the affirmation of identity and a bulwark against anonymity and social fading.

Attempts to exert mastery and control over cancer in the performative agency of the actor who speaks but is also spoken reveal pathagraphers’ indebtedness to the cultural conditions that help give rise to such narratives. As Butler (1990) reminds us, the repertoires and performative matrix in which speech and doing are located are always fashioned from pre-existing discourse. Seen in this light, their act ‘becomes a citation [as] they repeat an established protocol’ (Butler, cited in Gleeson, 2021). If, as Butler suggests, performative speech-acts help to create a new reality, then the contemporary narratives of public mediated dying of the sort discussed here may well reflect but also help to cultivate new ways of being in the face of illness and dying.

Discussion: capital, legacies, vanishing points

While access to the platforms by which one is today able to reach a wider public audience has opened up due to the advent of social media, public mediated dying of the sort discussed here remains, for the most part, culturally bound – the preserve of social groups whose power and privilege is manifested in forms of capital (social and cultural) that enable them to articulate their dying in ways that others cannot. Alert to the possibilities that performances at the end of life might contribute to how the dead are remembered, public mediated dying may be utilised to help to frame the posthumous identities of those with the social/cultural capital and the wherewithal to do so – often in ways that may contribute to their cultural afterlives (Penfold-Mounce, 2018). Those already in the public domain before their public dying, and with the resources to secure their cultural afterlives, are less likely to fade from public memory than those who came to wider public attention (but were not famous before) through their public dying. In attempting to secure their posthumous futures, those in positions of power/privilege able to publicly choreograph their dying may also be contributing to the perpetuation in death of inequalities that exist in life (Penfold-Mounce, 2020b).

Within death/bereavement studies of late, there has been growing acknowledgement of the need to decolonise its practices/focus in ways that resist ethnocentrism and recognise the complexity of people’s histories/situations (Hamilton et al., 2022). As indicated above, the instances of public mediated dying discussed in this article, while not representative of the UK population as a whole, are nevertheless representative of instances of public dying that have achieved ‘critical mass’ and been widely reported within/across mainstream UK media. Despite antecedents in the United States (Kalanithi, 2017; Lorde, 1980), those from global majority backgrounds in particular are conspicuously absent from public dying narratives in the UK.

This may perhaps reflect cultural distinctiveness in how particular communities ‘do’ dying, though this seems less plausible an explanation for the absence of Black and Caribbean voices in public dying narratives, especially given the well-established oral/storytelling tradition within African culture. Much more plausible an explanation lies in the underreporting of instances of minority ethnic public dying by mainstream media; and/or the underrepresentation of people from global majority backgrounds among the literati and those from the arts/entertainment industries from where the majority of those who share their experiences of dying publicly hail – though this too is less convincing given the diversity of voices in contemporary music, drama, and the wider arts. A third explanation may lie in the possibility that instances of public dying among individuals from a global majority background may remain ‘stuck’ at the level of media serving particular minority ethnic communities in ways that do not ‘cut-through’ to mainstream media/audiences. Either way, minority ethnic voices remain a vanishing point within contemporary instances of public mediated dying requiring further investigation in ways that are beyond the scope of this article.

Conclusion

Motivations underpinning a person’s decision to ‘go public’ with their experiences of dying vary and, even within a given social actor, are likely to be multiple. Such motivations may include: a desire to help others (by offering a usable template – of fortitude and resilience); to help oneself (as a form of self-care and/or distraction from one’s own precarity, predicament, and pain (Steinberg, 2016b)); to challenge prevailing discourses (of the cancer patient as metaphor of hopelessness, tragedy, and shame, or of the unremitting tyranny of positivity of cancer memoirs – and the portrayal of cancer as redemptive/transformative (Ehrenreich, 2009; Segal, 2007)). They may also be motivated by an interest in monetising the public sharing of one’s experiences to secure the futures of intimate survivors (as Jade Goody did by selling her story to benefit her sons (Woodthorpe, 2010)); and/or to secure one’s own legacy by helping to craft an enduring legacy of how one will be remembered within public memory.

Public performances of the kind considered in this article are performative by virtue of the ‘dramatic engagement’ they invite between the dying self and wider public audience. Any performance demands an audience and is oriented towards others. In the context of public mediated dying, it is in the space between performers (who are dying) and spectators (as participants to the performance) that intersubjectivity is born; a co-production facilitated by global (social) media that enables empathy, compassion, and companionship – a shared experience of ‘suffering-with’ (Ricoeur, 2009: 17) the dying person as they journey towards death.

As the counterpart to life itself, dying has always been performative. Deathbed scenes of the late middle ages were also performances, the ars moriendi tradition of which they were a part motivated as much by an attempt to create a favourable impression (and legacy) among survivors as they were by a plea to God for clemency in the afterlife. How dying is ‘done’ has clearly changed (and will continue to evolve), shaped by and in accordance with wider socio-cultural and technological changes that influence our performances.