By Eleri Fowler
In a time of widespread illness, many of us have been confronted with the labour of caring for the vulnerable. As Anne Boyer declared in April: ‘We now have to live as daily evidence that we believe there is value in the lives of the cancer patient, the elderly person, the disabled one’. While we have performed care as an act of political resistance, the same forces of state negligence have meant we have also had to navigate how to look after those whose lives are ending. However, in an unprecedented situation, social distancing measures have often meant this care had to be provided digitally. We’ve messaged sequestered friends, FaceTimed relatives in care homes and attended virtual funerals. This has left us with a stark contradiction: the only way our vital caring labours can be delivered is via the mediation of private companies like Zoom who are profiting from the crisis and our care.
Oreet Ashery’s 2016 work Revisiting Genesis – a surreal mockumentary-come-experimental art film, derived from interviews Ashery conducted with palliative care nurses and their patients – is remarkably prescient of the current situation due to its exploration of care for the dying and the appropriation of this work in the contemporary ‘death online’ industry. The film follows nurses who assist people who are ‘actively preparing for death’ using a new breed of digital technologies such as memorial jewellery (made from a loved one’s ashes) and augmented reality tombstones (which ‘combine the physical and virtual’ by featuring curated playlists and videos).
Care is normally understood as the provision of what is needed to maintain and preserve someone or something. In her work, social reproduction theorist Tithi Bhattacharya introduces the concept of ‘life-making’; although life is first made by giving birth, life must be consistently made and remade to keep it going. Due to the ongoing state of life, to care for someone is to enact the processes that sustain and continue their existence. Thus, care has an underlying temporal logic: it is performed in the present to facilitate life’s progression forward from that moment, to extend it into the future. How then do we approach caring for those whose lifespan is limited?
One answer is provided by Audre Lorde. Feminists often bemoan how the concept of self-care, which was figured by Lorde as an ‘act of political warfare’, has been co-opted into discourses of an individualist self-sustenance that upholds productivity. However, there is another aspect to Lorde’s influential account that is overlooked and misunderstood: her reflections on care were engendered by her experience of living with terminal cancer. In ‘A Burst of Light’, Lorde explains how this situation alters the temporality of care. She ‘turn[s] away from any need to justify the future—to live in what has not yet been’. Care is not provided to project her life into the future, on behalf of a subsequent version of herself. Consequently, the temporal logic of care is curtailed and circles back to be directed at the present: ‘these days are not a preparation for living … They are my life’. Care in this sense is not facilitating the continuance of her faculties, but a conservation of the resources she already possesses (she resists ‘the devastating effects of overextension’ not as ‘self-indulgence’ but rather ‘self-preservation’) so that she can live ‘fully in the present now’.  Care when dying is then a practice of cultivating an attachment and attentiveness to the present moment: ‘Time in this place is speedy, rich, and stark’.
Similarly, in Revisiting Genesis, a nurse tries to start a conversation about the patient’s legacy, asking ‘what’s important about being represented posthumously’? The patient, an artist, begins to talk about the body of work she has produced throughout her life but then quickly switches tracks, saying, ‘I’m interested in the now. The future at the moment doesn’t matter’. This is not simply a time of accumulation for posterity. A truncated temporality can be generative; the present excites her intellectual and aesthetic curiosity.
The film’s form also reflects the temporality of this care. It is a miniseries, each episode itself composed of discrete vignettes depicting conversations between different nurses and patients. These scenes reverberate in intensity with each other rather than build towards a narrative conclusion. Although there are different plot lines and we see nurses and patients at subsequent visits, the scenes emerge detached from a story arc; the focus instead is on the significance of the present moment, the present conversation.
Delivering care to the dying therefore necessitates remaining in this temporal space with them, or as Sophie Lewis describes ‘a willingness to learn the labor of holding; staying; witnessing’. This shift in the temporality of care means that the process has less of a rationale or end goal. Lewis, reflecting on her own recent experience of bereavement, has offered pertinent thinking around this. In an interview with Conner Habib, she describes ‘the logic of the hospice’ as ‘making comfortable and meeting desire rather than health’.
Acts of care are not performed to maintain a good physical condition in service of the perseverance of life. Instead, this form of care-work is more fluid, creative and spontaneous; it compels the cultivation of a finely attuned responsiveness to what is being asked for in the immediate instance. It is the radical act of giving people what they want in that moment with no motive for the future. For example, Lewis recounts when her mother’s ‘ability to eat and drink failed, the hospice facilitated her imbibing of wine by providing a wine-sponge on a stick’. Indeed, in a moving episode in Revisiting Genesis which depicts the nurses discussing their work over a tea break, one nurse recalls a time where ‘a woman called me into her room … she just said “sit down” … I held her hand … and she just talked about her life… I didn’t say anything … she finished her story, she let go of my hand and she went to sleep and I just left the room … she died the day later’.
This is the character of palliative care-work: listening, holding, being there. It can be hard to see this as an effortful labour because it is so reactive (indeed, the nurse says ‘there was half of me thinking: should I be doing something on the other side?’). It simply responds to the present, alleviating perhaps, but solving nothing and making nothing happen. Lewis names this converse form of care without a final purpose, that simply eases and soothes, ‘lubricating the … ends of human life-forms’, ‘death-doula-ing’. She notes that ‘the skills in question sprout up in the cracks throughout human societies, yet, under capitalism, there is next to no incentive for universalizing them’. Unlike the conventional activities of care, which provide the sustenance that reproduces a ready workforce daily and generationally, ‘the fact of departing, or arriving, or undoing life, remains (for now) of limited market use’.
We know that capital, reluctant to invest in caring activities (often conferring them upon the feminised population for low or no wages), undervalues and systematically undermines the socially reproductive processes on which it depends. However, it is keen, at least rhetorically, to have dominion over relations of care. In their recently published Care Manifesto, the Care Collective elucidate a process of ‘carewashing’ in which ‘powerful business actors are promoting themselves as “caring corporations” while actively undermining any kind of care offered outside their profit-making architecture’. This has only been exacerbated by new configurations of capitalism centred around digital technologies or ‘platforms’ that serve to extract and control data. As platforms are ‘digital infrastructures that enable two or more groups to interact’, the machinations of care as an inherently relational activity, premised around one individual caring for another, have been ripe for this technological ‘disruption’.
Furthermore, just as Uber profited from conditions of austerity by ‘exploiting gaps in underfunded public transport infrastructure’, these platforms have capitalised on ‘the care deficit created by the dismantling of public services–people working longer hours for less money–and a housing crisis that has ripped apart neighbourhood networks of care’. Indeed, the unique character of care as a material labour which often entails affective investment means it is able to span different types of platforms and both its paid and unpaid permutations can be appropriated. Care becomes a ‘capitalist service labour’ and the organisation of social reproduction has been altered from direct employment or casual, unpaid caring arrangements within communities by ‘a growing industry of digital platforms (including Care.com, Handy, Taskrabbit and Helpling)’. Similarly, communication platforms such as Facebook and Twitter liaise in our mediatised relations of care across ‘affective publics’. None of these platforms actually fund or provide care, rather they mediate and monetise existing relations of care between people. In this way, they ‘treat our data, our labour, our love as a resource of extraction’, latching onto existing patterns of care work and manipulating our desire to take care of each other as a way to extricate our personal information and ‘map an individual’s relational intensities’ which can then be sold for advertising purposes.
In Revisiting Genesis, the nurses’ care is filtered through a roster of digital platforms which claim they can ‘[improve] quality of life, [reduce] depressive symptoms and [encourage] meaning and social interaction’. One nurse even describes herself as ‘becoming a salesperson’ for ‘another stage of our lives’. While this might have seemed bizarre in 2016, the film’s exposure of the co-optation of care by digital technology in the death industry (all of the products exist in real life) has become even more pertinent in 2020.
In ‘Mutual Aid Inc’, Josie Sparrow identifies a rise of ‘tech-mediated, state-mediated corporate co-options of mutual aid’ which have endeavoured to take advantage of new formations of care which have sprung up in the face of widespread vulnerability to illness and governments’ neglect to support people to survive pandemic conditions. These digital technologies seek to commandeer these spontaneous relations of care ‘as something that is constricted, that flows upward’ to be ‘distributed outwards, like a resource’.
Sianne Ngai argues the smiley ‘confronts us with the radically alienated status of sociality itself under conditions of generalized commodity production’. In turn, its descendant, the emoji, has itself become an arbiter of capitalist sociality: affect ‘captured by capital through proprietary cultural representations’ circulates between individuals to represent and structure their interactions before being ‘recaptured through new technocultural forms’ to organise and elicit more nuanced affective data (than, for example, the simple ‘like’).
The new care reaction goes one step further in actively depicting a social relation. Care as a ‘reaction’ is grammatically strange; it exploits the intersection of affect and action implied by care. While it could represent ‘the feeling of concern or interest’, the reaction depicts an emoji face hugging a heart, actively giving care. Yet this is not something an ideogram can deliver to us – encoded characters cannot attend to our needs. The care reaction might thus represent the logical endpoint of this digital usurpation of care. It does nothing to actually supply care, but rather regulates our caring relations in order to extract our data (advertisers can now be privy to knowledge of what we ‘care about’).
Kylie Jarret suggests that on these platforms, users’ production of content and generation of saleable data represents a new model of digital labour. Influenced by early Marxist Feminist discussions of domestic labour, she identifies ‘the figure of the Digital Housewife, whose cognitive and affective efforts in building and sustaining interpersonal relationships online, in communicating and coordinating activity with others, in producing and sharing content, is at the heart of the collective intelligence of digital media’s commercial properties’. Similarly, the interventions of ‘Wages for Facebook’ riff on Federici’s famous 1975 polemic: ‘We are seen as users or potential friends, not workers in struggle … By denying our Facebook time a wage while profiting directly from the data it generates and transforming it into an act of friendship, capital has killed many birds with one stone’.
Throughout their lifetime, each individual will amass a body of data they have contributed via their use of these platforms. While some platforms intercept existing relations of care as a means of siphoning data, the technologies depicted in Revisiting Genesis comprise a way of continuing to monetise (store, process or transmit) the very set of data the individual has deposited for free after they have died. This is sold back to them as a form of care. Care for the dying is difficult and complex because it comprises supporting someone facing the fact they won’t be alive any more. This care does not sustain life, nor can it heal these emotions; all it can do is alleviate, respond, be there.
The companies featured in Revisiting Genesis claim they can short-circuit these messy, subtle caring labours by harvesting a person’s digital footprint and converting it into products that memorialise the individual and can be passed down or promising to safely store this information. For them, the trickiness of caring for the dying is just another problem that technological innovation can solve.
Anne Boyer notes that in her experience of undergoing treatment for life-threatening illnesses in the capitalist medical-industrial complex, ‘the work of care and the work of data exist in a kind of paradoxical simultaneity: what hold both in common is that they are done so often by women’. However, I want to argue the data-administering activities offered by the technologies in Revisiting Genesis should not be rightly called care but management. Marina Vishmidt notes that in ‘the space of ‘immaterial’ upkeep, that is, of brand equity or a public profile; corporate, personal, or the often vanishing border between the two’, these two processes can converge.
The digital death industry promises to look after the subjective profile the individual has cultivated via their activity online. In Revisiting Genesis, a nurse named Jackie tries to goad her patient, Bambi, into engaging with the platforms by asking ‘Do you care about your legacy?’ and ‘Do you want to be misrepresented?’. One such technology is the biographical slideshow which patients make to leave behind, fossilising a narrative of who they were and what their life was (an example is shown of the owner of a biscuit factory which concentrates on ‘eleven different kinds of biscuits’). Consequently, these technologies reinforce a situation in which ‘the self is hived off into a portfolio of assets, and the subject-brand controls its investments, like a shell company’. Under this dynamic, proposing to oversee the preservation of an individual’s idiosyncratic portfolio of data (‘the intellectual value of your digital assets’) can easily become a form of management.
Vishmidt describes management as ‘a (conjunctural) frame for containing uncertainty’. Dying presents the problem of not knowing what will happen after you are gone. By promising to continue and uphold the individual’s digital selfhood, the platforms claim they can control this issue (for example ‘password managers’ and ‘digital wills’ ‘store digital assets in designated virtual safes’ so that ‘data is all stored in one place so that relatives can access them easily’).
Death also engenders concern about how loved ones will deal with you no longer being around. Another type of technology purports to be able to ‘manage’ your feelings surrounding this and moderate the impending grieving process of those close to you. Nurse Jackie introduces Bambi to ‘digital sites for mourning’ that ‘can prove useful in helping the bereaved cope with their loss’ by ‘continu[ing] your relationship in some way’. There are ‘avatars’ of the deceased where ‘consciousness is fed as data along with some DNA samples and texture mapping into artificial intelligence robotic avatars’ (Jackie claims ‘the more data they process now, the more accurate and advanced its going to be’). There are also ‘emotional wills’ which ‘ensure your presence [will] be there when it counts’ by ‘storing video messages you’ve already recorded for loved ones to be released in the future’.
All the interactions mediated by these platforms turn towards what will happen in the future, after the patient has passed. This is not really palliative care, whose focus is on responding to what is needed in the present, supporting the individual through the emotions around dying. The technologies on offer circumvent the work of the nurses by asserting that what is troubling you in the present can simply be ‘taken care of’ in the future.
Indeed, in Revisiting Genesis, Nurse Jackie begins to stop noticing and reacting to Bambi’s needs, ignoring his desire for meaningful conversation; he comments on her outfit, wistfully reflecting on his desire to go to a party and she cuts him off to get down to business. She willfully disregards his obvious scepticism – he doesn’t want these products, he wants someone to listen to his confusion, sadness and rage – yet every issue is met with the introduction of a new product. The camera’s constant motion, never settling on a subject and repeatedly flicking in and out of focus, reflects this loss of connection.
Vishmidt notes that ‘nowadays management is concerned to be seen to care’. When care is a directive imposed from above, ‘taking care’ becomes a repressive, disciplinary obligation. Nurse Jackie’s care for Bambi becomes a form of coercion to participate in the technology’s machinations of ‘care’. She repeatedly pushes him to select his ‘digital legacy contact’, warns him he must make his digital assets available while he’s ‘still in control’ and even scolds him for his tardiness in getting his digital assets in order: ‘You mentioned your archive is in a complete mess and your blog is way out of date’.
It is clear the technologies provide little comfort. As Bambi protests, ‘you can’t really ease pain: grief is grief’. Finally, as well as revealing the encroachment of digital technologies on relations of care, the film depicts strategies of resistance. In Glitch Feminism, Legacy Russell uses the ‘glitch’ as a model for liberation in an increasingly digital world. She argues that ‘the notion of glitch-as-error … can be reapplied to inform the way we see the AFK [‘away from keyboard’] world, shaping how we might participate in it toward greater agency for and by ourselves.’ Rather than an accident, ‘glitching,’ can be ‘a pointed and necessary refusal’ of a society that fails us.
he doesn’t want these products, he wants someone to listen to his confusion, sadness and rage
In Revisiting Genesis, Bambi is repeatedly recalcitrant, failing to comply with the platforms’ mode of care: ‘It’s the professionalism of it all, I can’t stand it … the good thing about dying is that things are less and less professional, less and less linear, more and more murky and grey’. When care is warped into protecting your resources to optimise their usefulness for capital, neglecting to perform this upkeep is a powerful form of defiance. Indeed, the titular character displays a more extreme form of refusal. Genesis is not dying but ‘disappearing’ or ‘withdrawing’, refusing to sustain herself or participate, resulting in ‘long periods of silence’ and ‘stillness’ or ‘not moving much’. While Genesis’ friend protests ‘We’re all overstretched, we’re all overworked but you can’t just give up because you feel like it’, Boyer states ‘there is a lot of room for a meaning inside a “no” spoken in the tremendous logic of a refused order of the world … poetry’s no can protect a potential yes – or more precisely, poetry’s “no” is the one that can protect the “hell yeah”’.
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Eleri Fowler writes on gendered labour, care and social reproduction. Her work has previously appeared in SPAM and Notes from Below.