A fortnight ago, a friend sent me a light-hearted reminder that it was her birthday in a few days. She does this every year. The problem is that she died a couple of years ago, and I simply cannot bear to block her (and her digital messages) from my account. I wouldn’t want to either: her satirical messages still make me smile. Like millions of other people, her continued digital life serves as a reminder of her unique identity. Her messages from the grave are a profound example of a contemporary revolution in dying and death.
This revolution even precedes an individual’s death. In their final weeks, days, and hours, people with fatal illnesses have begun to enthusiastically tweet and blog about this most significant experience. The process of dying, as opposed to the ‘event itself’, has once again moved into public view. After death, the deceased’s Twitter feed or Facebook page is often taken over by relatives and friends – using the same picture and profile the deceased had control of when alive. Friends, family, and even acquaintances scattered throughout the globe can therefore participate in the creation of an afterlife on behalf of the deceased person, engaging emotionally – and creatively – with what used to be the ultimate taboo. Social media websites have become the new memorial books.
These dramatic changes could affect all of us. Every year, 525,000 people in England and Wales draw their last breath. Some die peacefully in sleep; others seethe with indignation until their last breath. Friends and family who witness the demise of someone they love feel helpless and distressed. Worlds are turned upside-down. The manner in which we die, and the way survivors grieve, is a marker of our individual character and collective culture.
The latest revolution—the digital afterlife—follows three earlier disruptions to death and dying over the past century.
Secular ways of death
The first is secularisation, which is the easiest to exaggerate. In a poem entitled ‘Aubade’ (1977), Philip Larkin claimed that religion is a ‘vast moth-eaten musical brocade/ Created to pretend we never die.’ Pretending that we are immortal is one fantasy: a more invidious illusion is that God has died. Remember: prayers are still murmured over dying and dead bodies; most funerals continue to take place in places of religious worship.
Nevertheless, there has been a waning in the efficacy of appeals to dying people that they should fear God’s omnipresence and omnipotence, and especially in the potency of the warnings about the literal existence of hell-fires. Fewer people currently call on a deity when dying or watching a loved one die. Fear of God’s judgement has been replaced by the metaphor of journeying into an unknowable abyss—a chilling ‘nothingness.’ Faced with extinction, modern commentators are more likely to recite those other lines in Larkin’s poem, which recognise ‘the total emptiness for ever,/The sure extinction that we travel to/And shall be lost in always. Not to be here,/Not to be anywhere.’ Death has become an existential void of non-existence, the ultimate denial of the modern self—and therefore a taboo we struggle to deal with.
Medical Ways of Death
Into this void steps the white-coated physician. This is the second great twentieth-century development in the culture of dying. While in the mid-nineteenth century, less than one-tenth of deaths took place in hospitals, public lunatic asylums, or workhouses, in the UK today over half of people die in a hospital bed or corridor. Pharmacology, the professionalisation of medicine, and the rise of end-of-life specialists were partly responsible for driving this change. In addition, smaller families, an ageing population, the greater propensity of women to work outside the home, and increased mobility of familial members have reduced the resources necessary for the efficient management of a domestic death. Relatives and friends also prefer experts to take responsibility for their dying loved ones. A recent National Survey of Bereaved People carried out on behalf of the Department of Health found that 74 per cent of 49,000 people surveyed believed that the right place for a person to die was a hospital. Yet, only 3 per cent of these respondents stated that the dying person him- or herself would want to die in such a setting.[3] Bluntly stated: hospital and hospice deaths are considerably more convenient for the family than the patient.
The removal of the act of dying from private homes and into hospitals worked—paradoxically—to make it an increasingly private event. Denied access to the intimacy of a domestic deathbed, fewer people witnessed the death of other people first-hand: they were increasingly uncertain about how they should comport themselves in the face of death or what ‘feeling rules’ should apply. Death’s script became mysterious and, consequently, more frightening. With medical personnel, rather than clerics, presiding over death’s terrors, questions relating to the meaning of life also tend to be sidelined. The medicalised gaze depicts human subjectivity as residing primarily in the corporeal body: death becomes a decisive event of the flesh, as opposed to a process involving the interaction between body and soul. Consciousness is nothing more than a physiological process.
According to this medical model, the gravest insult to both the dying person and the physician is pain. One of the consequences of the embargo on physical distress is the more intensive use of effective painkillers for the dying patient. Selling end-of-life pharmaceutics has become incredibly profitable. As a business model, it grew dramatically from the 1980s and, within a decade, had been institutionalised. According to one American survey, sales in this niche market (the drugs are likely to be administered to an individual for only a few days) had reached $1.5bn by 2005. The establishment of hospices contributed to this shift. It has happened remarkably recently. In 1967, Cicely Saunders opened St Christopher’s Hospice, the first one in London, dedicated to ‘total care’ of the terminally ill. It was at the crest of a movement that set out purposefully to improve the quality of life for the dying. As it spread, fear and pain among the terminally ill has come to be regarded as a sign of medical incompetence.
This shift in the meaning of pain was part of a seismic adjustment in the dying person’s understanding of the meaning of their own suffering. Christian interpretations of pain in terminal illness could be relentlessly upbeat: the person who endured agonising flames of pain in this world would be spared them in the next one. Bodily distress was seen as a mechanism for drawing people into God’s embrace, and thus ensuring salvation. A sudden death was feared because it did not give people time to purify their heart and soul in anticipation of the Great Judgment in the hereafter. Stoicism was an integral part of the ‘good death.’ Crucially, death’s agonies would also provide spiritual and moral guidance for observers as well as patients. Physicians, family members, preachers, and even strangers would take heed, turning off the highway of iniquity on to the path of goodness.
Nothing could be further removed from the meaning of dying the late twentieth century where, for many people, a sudden death is the preferred variety. Perversely, though, organ transplants, life-support systems, intravenous nutrition, dialysis, and resuscitation techniques have dramatically prolonged the process of dying. Fear of the excessive prolongation of life, or being obliged to stay alive after all pleasure has been removed, has become more dominant than the fear of death itself. ‘Quality of life’ trumps the advantages that might be achieving by purging the soul. Freedom from pain has become a fundamental right. We all deserve to ‘die with dignity.’
The medicalisation of death not only altered ideas about pain: it also changed ideas about whether death was (or should be) frightening. For many theologians of the early twentieth century and earlier, it had been considered appropriate to fear death. In the words of William Booth, revivalist preacher and founder of the Salvation Army, ‘Nothing moves people like the terrific. They must have hell-fire flashed before their faces, or they will not move’ towards the altar of salvation. Fear is the rock upon which Christ built His church.
In contrast, physicians set themselves the opposite task: reassurance. In the words of the great Edwardian clinician William Osler, four-fifths of people on their deathbeds were emotionless: ‘like their birth, their death was a sleep and a forgetting,’ he informed his students. Since consciousness relied on adequate quantities of healthy blood reaching the nerve centres, and because the brain was the first organ to be deprived of blood, seriously ill individuals rapidly lost all apprehension of pain or fear. According to such ways of thinking, once the corporeal ‘self’ weakened, the spirit had already departed.
The commodification of the body
The corporeal self that dies, however, is also increasingly fragmented and commodified. New medical technologies and ways of thinking view the body as a jigsaw-like entity consisting of interchangeable parts. Evidence of ‘malfunctioning’ leads to calls for replacement (organ transplants, for example); faulty bodily processes can be replicated by machines (such as dialysis). Individuals are no longer unique, indivisible. Indeed, at the very end, their bodies can be kept (sort-of) ‘alive’ just long enough to become the source of life for other bodies that are ‘dying’ (more slowly).
The dualistic separation of the ‘self’ from the ‘body’ allows for the marketing of those ‘parts.’ Procuring, preparing, and replacing bodily organs is extremely expensive, as are the technologies for imitating healthy physiological activities. Left to its own devices, the neoliberal marketplace is an insatiable taskmaster. In the affluent west, professional bodies and governments impose some strictures. But there are, nonetheless, rising concerns with the regulation of bodily parts by national health regulatory groups, biotechnological industries, and trans-national corporations. When Health Secretary Jeremy Hunt recently launched plans for an ‘opt-out’ system of organ donation (meaning that it would be presumed that everyone would be happy to donate their organs on their death, unless they had explicitly registered dissent), concerns were raised. Might the organs, tissues, and blood of certain groups of people (minorities, for example) be ‘harvested’ with undue haste? Thousands of (other) lives would undoubtedly be saved, but where were the safeguards? The commodification of human organs represents the ultimate in biopolitics—or the political control of populations at the biological and species level.
The Digital Way of Death
My first three transformations—secularisation, medicalisation and commodification—can all be thought of in terms of the old Cartesian idea of life—resting on the distinction between mind (res cogitans) and body (res corpus). More recently, however, technology has begun to gnaw away at this understanding of life, replacing it with a more informational conception. This, in turn, disrupts the old mechanical conception of dying and dead bodies with something new—res digitalis.
In the digital age, humans are defined by their web of digital connections, including online data storage and communication systems. In sharp contrast to the period before the 1990s, res digitalis has catapulted death once again into a dominant position—with one major difference: dying and death is exposed within a vastly extended public sphere.
Email, blogs, photo-streaming, and social-media accounts allow dying to be shared, as casually as we share the more banal areas of life, such as what we enjoyed on a ‘night out with the gals’. This has some negative aspects. Cyberspace is awash with corporate interests. Digital-age dying has reinforced consumerism: ‘alternative’ therapies turn out to be expensive and exploitative of people’s fears and anxieties. It can also encourage digital narcissism and the imposition of conservative gender norms. Breast cancer websites, for example, exhort women to put on a ‘brave face’ and, above all, never lounge about the house in a shabby dressing gown. ‘Victoria’s Secret’ must continue to be shared with one’s lover or spouse.
Nevertheless, ill and dying people, as well as their relatives and carers, have enthusiastically embraced new media and new forums, in order to write about their hopes, fears, fantasies, and plans for the future, including their own memorials. Digital sites not only allow them to communicate intimately with (potentially) millions of people all over the globe, but also to provide a space where self-reflection is fostered and creativity is positively encouraged. The fundamentally interactive nature of these communications makes them quantitatively and qualitatively different from print-based pathographies, or sickness narratives. They are also fundamentally anti-elitist, defiantly claiming that the experience of ‘ordinary sufferers’ is of greater validity than that of the ‘expert’ priest, physician, psychiatrist or counsellor.
Not only have the physical limits to our identities have been extended spatially (it is as simple for me to share my fears of a new tumour to someone in Sierra Leone as to a friend in the next room—indeed, it might be easier), but our identities also extend post-death, beyond the grave. Like my dead friend who continues to remind me to buy her a birthday present, the longevity of our digital selves partly explains the popularity of memorial websites and Facebook pages. The dead are not forgotten. The emotions engendered by such encounters in cyberspace weave into and out from the everyday sociability of our lives.
The power of this new afterlife can be seen in the aftermath of Guardian journalist Michele Hanson’s death on 1 March. Hanson could be seen reporting her own death on her titter feed (which had been taken over by her daughter). Her twitter account then served as a forum for thousands of heartrending memories of and memorials to Hanson’s life from all over the word including Sierra Leone. Hanson appeared to be retweeting tributes to herself – from another afterlife.
Digital futures have also undermined the earlier secular twist on dying. After all, a spiritual sense of a paranormal ‘Other’ never really disappeared—it simply went underground: dying people continued to pray privately, while publicly submitting to the best treatments that a highly technological, medicalised profession could offer them. Today, institutional religions have become enthusiastic users of Facebook and other social media not only to share information about spiritual activities, but also to provide reassurances of an afterlife for the dying members of their congregation and those people mourning the death of a loved-one or friend. More commonly, dying-blogs attest to non-denominationally spirituality, often in highly idiosyncratic ways, but sincere nonetheless.
Res digitalis has been important in encouraging people to re-engage with the ‘big questions’ of the meaning of life and death. It has caused a shift in the processes of dying and grieving, enabling us to transcend the anxieties of previous centuries. It also emphasises that permeable border between the dead and the living, and therefore points the way to new and more creative way of being human.
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