“Our society is set up for everything to be quite predictable and controlled, and the fact that caving can be completely different than that, I think, is what’s super addictive about it.”

– Extract from an interview with a caver

‘Self-care’ is a multi-billion dollar industry, encompassing vast markets pertaining to wellness, cosmetics, diet, and more. This commercialised idea of self-care connects the idea of consumption to the act of care. I aim to offer a novel alternative to the idea of ‘self-care’, in relation to the ways British caversenter into uncertain environments, amongst other things, as an act of ‘self-care’.

In the summer of 2023, I conducted my undergraduate dissertation fieldwork on a caving research expedition in the Austrian Alps. Made up of mainly students and working professionals from the UK, the cavers were all volunteers who funded and planned the project themselves. The expedition aims to map the cave system which lies underneath the Loser limestone plateau. The cave system – at present – stretches over 150km long and over 1100m deep, and is the focus of surveying carried out by the expedition. Each summer for six weeks, cavers are involved with recording the dimensions of passages they travel through, as well as writing up their surveys and producing 2D and 3D maps of the cave system. Caving as a practice straddles the categories of sport and science, with elements of it being physically demanding and recreational, yet also having research and scientific endeavours as central. These scientific endeavours include producing cave surveys, and researching the cave environment itself (speleology, or ‘cave science’). 

My own dissertation research initially focused on attitudes to mapping, ‘nature’, and the idea of new spaces while caving. Risk was never something that I set out to focus on, and yet it quickly became clear that this was an axis around which many cavers understood their relationship to the cave environment as a way to construct their sense of self. For this article, I will focus on the latter. Through acquiring technical competence and interpersonal trust, cavers cultivated an embodied feeling of self-assuredness, manifesting in positive affective feelings that they were caring for themselves. This could be characterised as self-care, which is one of the terms that my interlocutors used, alongside ideas of meditation and groundedness. For many of the cavers I spoke to, caring for oneself meant being able to trust oneself to be safe in an environment of heightened uncertainty and risk. Though various terms were used, the understanding was thus: engaging in practices in uncertain environments, like caving, allows people to cultivate embodied competence which isn’t usually required in their day-to-day lives characterised by predictability. Taking a cue from Lefebvre’s work on the purpose of leisure pursuits, we can see these musings on risk and competence as ‘a critique of daily life’ (Lefebvre 1979: 140); a way of conjuring opposing images to the lives people usually lead. 

For many working professionals living in the UK, pursuits with a level of unpredictability and risk offer an alternative way of actively relating to one’s environment that they feel is missing. It is in this environment of uncertainty that one can cultivate certainty in themselves. Being confident in one’s ability to navigate an unknown situation safely – drawing on a myriad of technical competencies of oneself and others – means a particular certainty in oneself. These feelings of self-confidence and trust in others were described by my interlocutors as a form of ‘self-care’.

One of the first things I’m asked when I tell people I do caving is usually along the lines of, “Why do you do that when it’s so risky?”. Between fears of getting lost, getting stuck, and getting trapped through flooding, it is a pastime which certainly makes you aware of bodily vulnerability.

When caving, awareness of risk is front and centre. Caving is a group endeavour, typically carried out in parties of three or four. Before going underground, one leaves a ‘callout’ – a message to a trusted person detailing the intended route and estimated time to be out of the cave; if this time comes and goes, the person calls the local cave rescue organisation. Caving in Austria specifically involved temperatures below freezing, vertical shafts over 100m deep, loose boulders and a risk of flooding – to name a few. Some of my interlocutors went on trips lasting over 48 hours, sleeping and eating underground. The physical distance from potential assistance, as well as the unknown qualities of the cave passages to be surveyed, meant an environment where trusting groupmates, maintaining an awareness of risk, and ensuring personal technical competence was key.

Another example of the relationship between outdoor pursuits, risk, and modernity is Neil Lewis’s 2004 article on the embodied ethics of British traditional (trad) climbing. In the piece, he explores traditional (‘trad’) climbing as a practice of resistance to rationalisation, specifically utilising George Ritzer’s concept of ‘McDonaldization’ as an oppositional framework to understand the ‘massification’ which trad climbers actively seek to avoid. Ritzer’s massification supposes an extension of Weber’s ‘rationalisation’ in which modernity creates experiences which are efficient, calculated, packaged, and – crucially for understanding the oppositional ethics of trad climbing – predictable. Lewis details the strict conventions of trad climbing, crucially the prohibition of bolting fixed anchor points into the rock, which would serve as a reliable safety mechanism to catch a climber should they fall. Instead, trad climbers opt for temporary anchor points which can be inserted into cracks in the cliff, and then removed after the climb. Lewis argues that the ethical underpinning of trad climbers’ aversion to bolting technology lies in part in a commitment to the embodied experience of risk. Having the cliff as a ‘falling-off place’ (Lewis 2004: 85) means the climb is experienced as a visceral form of ‘deep play’ ⁱ (See Geertz 1973). 

Taking a cue from Lewis, we can conceptualise risk in outdoor pursuits not as an unfortunate obstacle to be avoided, but as an element crucial to the embodied ethics of the pursuit. This purposeful cultivation of an uncertain environment – often through the eschewing of certain technologies (see Lorimer and Lunde 2003 for a discussion of GPS devices in Scottish hillwalking) – enables an embodied experience of risk, and crucially, competence.

The quote at the beginning of this piece is pulled from an interview I conducted with a caver about his experience of caving on the Austrian expedition. In an explanation that looked straight out of Reitzer’s ‘McDonaldization’ thesis, he discussed the predictability and standardisation of day-to-day experience for many working professionals in the UK. He goes on to contrast this to the unpredictability and risk one experiences whilst caving, especially on the expedition. In a ‘McDonaldsized’ world where risk is largely absent, ‘edgework activities’ (Lyng 1990) which carry the risk of extreme harm to oneself allow for the cultivation of embodied competence, interpersonal dependence, and self-assuredness. My interlocutors variously described this as ‘self-care’, as a way to feel ‘grounded’ and as a practice of ‘mindfulness’.

It is in this environment of high level of uncertainty that cavers cultivate a subjectivity which embodies technical competence, trust in others, and an ability to stay calm in the face of unanticipated risk. The ‘McDonaldzified’ environment of everyday predictability actually creates an uncertainty within oneself: an uncertainty of one’s own competence. Yet through purposeful exposure to uncertain environments, cavers engage in this embodied form of ‘self-care’.

Endnotes

i. ‘Deep play’ references a concept by Jeremy Bentham referring to a game or practise with stakes so high that it is irrational to engage in it.

Evelyn Surman is a third-year Social Anthropology undergraduate at Newnham College, Cambridge. In her free time, she helps to run NerdHerder, a student journal for pop culture, as well as serving as Access Officer on Newnham’s JCR. She also enjoys hiking, climbing, and caving.

References

Lefebvre, H. (1979) ‘Work and Leisure in Daily life’ in A. Mattelare and S. Siegelaub (eds) Communication and Class Struggle: Capitalism, Imperialism.

Lewis, N. (2004). Sustainable Adventure – Embodied experiences and ecological practices within British Climbing. In B. Wheaton (Ed.), Understanding Lifestyle Sports.

Lorimer, H., & Lunde, K. (2004). Performing Facts: Finding a Way over Scotland’s Mountains.

Lyng, S. (1990). ‘Edgework: A social psychological analysis of voluntary risk-taking.’ American Journal of Sociology, 95, 851–86.

Ritzer, G. (1993). The McDonaldization of society: An investigation into the changing character of contemporary social life. Pine Forge Press.

Weber, M. (1946 [1919]). Science as a Vocation. In H. H. Gerth and C. Wright Mills (Eds.), From Max Weber: Essays in Sociology, pp.129-156. 

Growing up, every Singaporean recalls belting out the lyrics of NDP (National Day Parade) songs at some point in their lives. These are patriotic songs commissioned annually by the Singaporean government for the country’s National Day celebrations. For most of us, these songs are simply good fun—a catchy tune reminiscent of our school years and a channel for our patriotism on National Day every year. As pragmatically minded people, we are not often inclined to consider deeper contemplations about the cultural and societal roles of these songs. Yet, my foray into anthropology this past term has spurred some reevaluation of the more mundane aspects of life. This has turned my attention to the role of Singaporean patriotic songs (colloquially known as “NDP songs”), commissioned by the government, in constructing narratives of care which shape our national identity and foster loyalty amongst citizens whose duty of care to one another is affirmed by these tunes. As care is a powerful force that affects our conceptions of identity and the bonds that hold us together, this article examines care as a tool in constructing identity and in engendering a sense of duty; that Singaporeans who have reaped the benefits of communal care must play their part in reciprocating.

Origins of the NDP Song—A Mobilising Cry

The historical prevalence of patriotic songs used to mobilise soldiers (Hamer 2018) is testament to the potential of music where harmonies paired with lyrics inspire a strength of feeling that words alone cannot match. Governments have consequently not been shy to employ music to further their cause. Singapore’s NDP songs have a similar origin and were engineered by the state to promote a sense of national identity which spurs people to come to the defence of the nation in times of peril as part of the country’s total defence strategy (Kong 1995). The NDP song is therefore a deliberate and conscious construction that builds our sense of nationhood and duty.

While Singapore has fortunately never been at war and has never had to use NDP songs for this purpose, the mobilising role of patriotic songs in bringing Singaporeans together in the face of adversity was apparent in the release of the song, “Everything I Am” (Wan 2020), at the height of the country’s fight against the Covid-19 Pandemic where Singapore politicians frequently used the language of war to describe the country’s response to the pandemic (Rajandran 2020). A slow and poignant tune set against images of frontline workers and Singaporeans adjusting to the new norms of “social distancing” and “work from home” measures, the song emphasises the resilience of a people whose individual demonstrations of care for one another represent unifying and motivating forces that sustains the nation in times of hardship:

I want you to understand

Because of you, I am who I am

Because of who you are

I can be everything I am

A Uniquely Singaporean Identity

In a diverse country comprising members of different racial backgrounds whose forefathers came from disparate lands, NDP songs endeavour to forge a uniquely Singaporean identity, in line with the state’s policy of multiracialism, where its people are defined, not by their diverse backgrounds, but by their shared status as citizens. NDP songs thus seek to establish a new kind of bond that redefines a uniquely Singaporean identity founded on the solidarity of its people through the exercise of care for their country. “One People, One Nation, One Singapore” (Monteiro 1990) emphasises that “every creed and every race, has its role and has its place”. Despite our origins as “strangers when we first began”, “now we’re Singaporeans” where the “toil of a people from distant lands” has “built a nation with [their] hands”. The success and forging of a distinctly Singaporean nation is attributed to care dispensed by Singaporeans for their fellow countrymen, regardless of their background. Subsequently, the song calls upon Singaporeans, now united by a common nationhood, to reciprocate that care, “to reach out for Singapore, and join our hands forever more”.

NDP songs therefore play a critical role in the government’s nation building strategy. It is a conduit for the creation of a uniquely Singaporean identity and culture. As founding prime minister of Singapore, Lee Kuan Yew, remarked, the state aims to produce a community that feels together and come together on certain things, motivated by a sense that “this is my country, this is my flag” (Kong 1995), words later invoked in the lyrics of the song, “We are Singapore” (Harrison 1987):

This is my country, this is my flag

This is my future, this is my life

This is my family, these are my friends

We are Singapore, Singaporeans

To be Singaporean, is to be part of a family, likewise observed in the song, “Song for Singapore” (May 2010), that refers to fellow Singaporeans as “brothers” and “sisters”. In constructing narratives of care, Singapore patriotic songs often evoke the language of familial bonds. Narratives of caring for fellow Singaporeans therefore impose kinship standards upon citizenship, which engender greater patriotism by strengthening the bond of common nationhood, and, thereby, place the duty of care and the onus of reciprocity to contribute to the nation upon them. As blood is thicker than water and so binds us more strongly to our country, the state is only too keen to conflate the relationship between kin and polis in these narratives.

Success as Products of Care

Besides the potent symbol of kinship employed to strengthen a sense of national spirit, NDP songs are replete with other forms of symbolism, tied to notions of care, to engender greater feelings of identity and loyalty. In appealing to care as pivotal to Singapore’s prosperity, these songs evoke the imagery of buildings and iconic landmarks of the city as material representations of the nation’s success, whose impressive scale and grandeur signify the collective strength of our care. This is apparent in the song, “Singapore Town” (The Sidaislers 1997), where the imagery of iconic Singapore landmarks is evoked:

You could take a little trip around Singapore town

In Singapore city bus

To see Collyer Quay and Raffles Place

The Esplanade and all of us

This imagery of physical structures is subsequently tied to our hopes and aspirations:

The buildings are climbing all the way to the sky

And there’s a hundred other people who are striving

For people like you and I

Within the song’s narrative, the spatial forms of buildings in Singapore and their development run parallel to the aspirations of its citizens whose strivings “for people like you and I” are metaphorically manifested in the way our buildings climb to the sky. Care, as the song attributes, is at the root of this development. The landmarks of Singapore are, therefore, physical examples of the potential inherent in our care—of what care has given us and what our care can yield us. When speaking of Singapore’s transition from third world to first, the imagery of a backwater fishing port which develops into a thriving metropolis is frequently invoked. The symbolic purpose of national structures as markers of prosperity and progress is thus firmly embedded into our national consciousness.

The role of these spatial forms is likewise observed in what is arguably the most iconic of Singapore’s patriotic songs: “Home”. NDP songs have assumed a variety of styles from the upbeat to the contemplative. All patriotic songs are naturally celebratory, but ‘Home’ (Lee 1998), assumes a quieter celebration of Singapore. As the song’s title suggests, Singapore assumes a position which transcends its physical status as a place of residence. It is home, a place of belonging, where notions of care and communal support are tied to its spatial forms. The physicalities of the Singapore city serve as symbolic reminders that immerse citizens on their metaphorical journey through the city and its winding landmarks. Contrasting the hustle and bustle of Singaporean life and the grand and triumphant tone of previous songs, ‘Home’ is slow and urges its listener to take a contemplative ‘sail’ down a river winding through Singapore, reflecting that:

There is comfort in the knowledge

That home’s about its people too

So we’ll build our dreams together

Just like we’ve done before

Just like the river which brings us life

There’ll always be Singapore.

The impressive physical structures we encounter on this “sail” constitute material reminders of how a people, tied by mutual care, have forged, in unison, a more successful country. Structures, besides being physical manifestations of prosperity, are also symbols of our identity, hopes and dreams. Thus care, represented by the building of structures and dreams are critical to the formation of a successful Singapore. Through evocations of spectacular buildings as symbolic manifestations of success, hopes and dreams, the government encourages its citizens, not just by evoking notions of duty but by the potential present in their care, to forge a better future for themselves. The spatial forms of Singaporean landmarks are therefore signifiers of success that cement the importance of care in the country’s continued success. Aligned with the communitarian sensibilities of the Singapore Government, NDP songs perpetuate state narratives that communal care and individual responsibilities to the state are at the heart of its success. In invoking the imagery of impressive buildings and iconic landmarks, the government essentially says: look at what has come of your care. NDP songs ultimately aim to encourage Singaporeans to “look where we are”, see that “we’ve come so far”, “and [that] there’s still a long, long way to go” (Lee 2002).

A common theme of NDP songs is the role of the individual. Images of impressive landmarks are invoked as symbolic demonstrations of what care, even small acts by ordinary individuals, can achieve. The juxtaposition between the scale of our success, represented by large and impressive structures, and small and mundane actions of care, invoked in NDP songs signify the potential and power of communal care. The strength and role of the individual, by the smallest act of his care, plays a part in constructing a more prosperous Singapore:

One man on an island

One drop in the sea

All it takes to set a wave in motion (Lin & Low 2021).

Conclusion—The NDP Song in Singaporean Lives

Anthropologists study the phenomena of culture and customs whose motivations and origins are often obscured. As “clinically engineered” (Koh 2021) forms of music to serve the state’s purpose of nation building, the NDP song provides a unique opportunity to examine a deliberate and conscious endeavour to create a distinctly Singaporean culture and identity. Singaporeans, however, have not always been responsive to NDP songs (Lai & Chia 2013) and their narratives of care. Dismissing these songs as state-fed propaganda and a perception that songs in recent years have declined in quality, the NDP song has faced numerous trials in gaining acceptance by the Singaporean people.

Cynical as we are, however, the ubiquitous nature of these tunes and the role they have played in the Singapore experience makes it hard to deny their impact on our sense of identity and the Singapore experience. Few Singaporeans can grow up without being able to recall a few lines of these iconic tunes. The success of a song in appealing to Singaporeans has been posited to be linked to the role it played at certain points in a person’s life, from dancing and singing to songs in primary school celebrations (Tan & Chng 2021) to ties with contemporary events, as with “Count On Me Singapore”, written as a response to the 1985 recession and the pessimism of its youth (Koh 2023). 

Just as Singapore has grown in the years since its independence, the NDP song’s style and structure has changed across the years (Koh 2021). From rousing tunes (“Stand Up for Singapore”), to reflective songs (“Home”), to the modern, more experimental songs (“Tomorrow’s Here Today”), these narratives of communal care, engineered to spur patriotism and their attempts to adapt to the preferences of a changing populace, are also reflective of the stories and aspirations of a people that changes from generation to generation (Tan & Chng 2021). What unites these songs, that have differed across generations, is a common theme that care for Singapore and its people has, is, and will continue to be integral to the success of a nation.

You and me, we’ll do our part

Stand together heart to heart

We’re going to show the world what Singapore can be

We can achieve, we can achieve (Harrison 1986).

Fabian Chan is a first-year undergraduate at the University of Cambridge, studying Human, Social and Political Sciences. Having never heard of anthropology prior to his time in Cambridge, his trials and tribulations in his first term adjusting to the rigours of this new subject has since developed into a deep passion for the discipline which challenges our normative understanding of culture and society. Seeking to apply this new subject to gain a fresh perspective of his native culture, Fabian is keen to reevaluate the cultural role of his favourite form of music, Singaporean patriotic songs, which he plays incessantly when studying, jogging and staring into space. 

References

HAMER, P. 2018. Patriotic Songs as a Means of Mobilization in Besieged Sarajevo, Bosnia-Herzegovina from 1992 to 1995. Lied und populäre Kultur/Song and Popular Culture 63:6, 111-128.

HARRISON, H. 1986. Count On Me Singapore. Singapore: Hugh Harrison. (Available online: https://youtu.be/wDHjb91wvW0?si=42edDkjdXlTZpCN4)

HARRISON, H. 1987. We Are Singapore. Singapore: Hugh Harrison. (Available online: https://youtu.be/RjKf10MS4JI?si=GKWrdQUl9IYWrbi1)

KOH, G. 2021. How and Why National Day Songs are Created, Explained. (Available online: https://thekopi.co/2021/08/09/how-and-why-are-national-day-songs-created-explained/)

KOH, N. 2023. It’s Not ‘Home’: What Makes a National Day Parade Theme Song Iconic? (Available online: https://www.ricemedia.co/what-makes-national-day-parade-song-iconic/)

KONG, L. 1995. Music and Cultural Politics: Ideology and Resistance in Singapore. Transactions of the Institute of British Geographers, 2:4, 447-459.

LAI, L. & S. CHIA. 2013. National Day song hits a few sour notes. (Available online: https://www.straitstimes.com/singapore/national-day-song-hits-a-few-sour-notes)

LEE, D. 1998. Home. Singapore: Ocean Butterflies. (Available online: https://youtu.be/gYSlRv0uwdg?si=14XL24_sQY-xZJxK)

LEE, D. 2002. We Will Get There. Singapore: Dick Lee. (Available online: https://youtu.be/HYiSWDbvM60?si=OX2AAokBvPCNHCa2)

LIN, Y. & E. LOW. 2021. The Road Ahead. Singapore: Linying & Evan Low. (Available online: https://youtu.be/II_5jBaYmGQ?si=U-U54pLRb_08j9uE)

MAY, C. 2010. Song for Singapore. Singapore: Eq Music. (Available online: https://youtu.be/oGY5ff831B8?si=cfoFAzz-PYOUCqze)

MONTERIO, J. 1990. One People, One Nation, One Singapore. Singapore: Jeremy Monteiro. (Available online: https://youtu.be/HVxk2SK4Wmg?si=pGQrPShxY_YrSbnz)

RAJANDRAN, K. 2020. ‘A Long Battle Ahead’: Malaysian and Singaporean Prime Ministers Employ War Metaphors for COVID-19. GEMA Online Journal of Language Studies. 20:3. 261-267.

TAN, Y. X. & S. CHNG. 2021. Striking a Chord: Investigating Singapore’s Beloved National Day Songs. (Available online: https://lkycic.sutd.edu.sg/blog/investigating-singapores-beloved-national-day-songs/)

THE SIDAISLERS. 1997. Singapore Town. Singapore: The Sidaislers. (Available online: https://youtu.be/UI_dTDxTf7w?si=NKZNKjAS2Jyub01E)

WAN, J. 2020. Everything I Am. Singapore: Joshua Wan. (Available online: https://youtu.be/7qetsLTxml0?si=wc1cL_bFOfelTRyg)

I am picking my way over rough ground with Ellie. We are being careful to avoid the thistles and the many holes that invite rolled ankles. To our left is open ground with a mix of grasses, heather, pine saplings and bracken. To our right is an electric fence and then beyond that is a heaped mass of gorse. It’s so densely thrown together it reminds me of a great pile of waste. Apparently, the needles of a gorse bush narrow down to a point sharper than a hypodermic needle. From one perspective, gorse is barbed wire that can photosynthesise and a strangling weed to be removed.

Ellie’s eyes move between scanning the gorse for any movement and then checking the ground for solid footing. We’re looking for five Exmoor ponies. Ellie explains to me that ponies like to disappear deep in the gorse. Their hides are thick enough to move through the gorse. Over time, these ponies create tunnels through the gorse. Ellie believes they disappear into the gorse for two reasons. First, it protects them from the elements. The Ashdown Forest is the highest land for twenty miles so the weather varies from glaring sun to harsh winds to persistent rain. Secondly, Ellie speculated that these ponies have a preserved prey instinct. Exmoor ponies are strong horses and have no predators on the Ashdown Forest and yet they seem comfortable hidden in the gorse. From the Exmoor pony’s perspective, this gorse is safe and sheltering.

Eventually, at the bottom of the fence, Ellie spots the brown flank of an Exmoor pony. Not long after it has slipped back into the gorse, we spot the heads of three more ponies. Ellie tries to assess how healthy each pony is. She wants to see them walking naturally and check their hind areas for infections. This activity is known as lookering. This is an invented term for conservationists going out and ‘checking in on’ their grazing animals. Now, I can understand why it got this name. As Ellie lookers each pony for disease and discomfort, the ponies are staring back at her. They almost seem to be asking ‘who are you to gaze at me?’ I find it harder than expected to break their gaze. Both human and pony are uncomfortable. No one quite knows how to respond.

The tension breaks when Ellie clicks her tongue and calls out to find the final pony. Now the ponies recognise who these visitors are. They lower their heads and wheel round to nuzzle each other. This sudden resolution of tension allows the fifth pony to reveal itself from the gorse background. Ellie is satisfied with this pony’s health, and we turn to walk back up the hill. Just a moment after we turn away, we hear a thundering behind us. Three spooked ponies canter down the hill and along the front of the fence. I don’t understand why they so unexpectedly bolted, but I can feel the weight of their movement. For a herbivorous animal kept behind an electric fence, I’m more intimidated than I should rationally be.

Ponies as mowers

Why have the conservationists ringed these ponies into three hectares with electric fencing? The short answer is: ponies eat the gorse. The longer answer is: Historically, gorse would have been cut back by humans and may have been used for firewood. In the Victorian period, gorse flowers were picked and then transported to London to make soap. Today there’s far fewer people making a living harvesting the Ashdown Forest’s natural resources. This allowed invasive species such as gorse to proliferate. Gorse is different to other ‘undesirable’ plants. It degrades the heathland environment by cramping out the heather.

So, the conservationists instrumentalise ponies to remove invasive species. The conservationists do possess tractor towed mowers that can strip a twelve foot wide patch down to the bare earth. However, ponies and grazing animals are far less destructive. I later asked Mitch, who is very active in caring for the animals, how selective the ponies could be. He pointed to an individual pine sapling. He said that the ponies would take the sapling out and leave heather around it.

Interestingly, conservationists wouldn’t say that the grazing animals are actually deliberately caring for the environment. Rather, conservationists believe that the grazing animals are performing their natural function. Whilst we stomping through long grass to look for a flock of fourteen ponies, Paul drew a comparison between grazing animals and other intrusive methods. Paul said the three strategies for managing invasive species are chemical poisons, towed mechanical mowers and animal grazing. Paul described animal grazing as ‘intimate’. He draws a metaphorical link between animal grazing and other instruments of conservation. The grazing animals are intimate mowers that do what they are naturally programmed to do. They are not directly caring for the environment.

This instrumentalization means that the Exmoor ponies have become ‘sacrificial populations’. (Van Dooreen 2014: 91) Their lives are degraded, so that the fragile heathland ecology can thrive. We should note that the animals are well treated by the standards of contemporary agriculture. However, these animals are still vulnerable to diseases that result from settled human agriculture. These are what Scott calls ‘the diseases of crowding’. They have a strong link to concentrations of faeces (Scott 2017:103). A few weeks prior to lookering with Ellie, a sheep had died from Pasteurella. Pasteurella is also known as shipping fever. It is far more likely in animals kept in stressful and over-heated environments, such as the transport trailers. It can become fatal if this stress is followed by bacterial exposures when co-mingling with other populations (Bagley 1997). This combination of lifestyle and bacterial exposure was enough to kill. Conserving this man-maintained environment requires violent and brutalising interventions. But, correctly enacting these interventions requires care.

Fundamentally, the conservationists know that these animals have their own agency. These are independent animals that conservationists cannot totally control. Conservationists use the animals’ knowledge that they are being cared for to alter their behaviour. I saw this when Alex tried to get a herd of Highland cattle to come to his call. He did not want the cattle to come ‘for the wrong reasons’. Alex shook a bucket of feed and deliberately held back his sheep dog. Alex didn’t want the cattle to be forcibly herded by his dog. In a Pavlovian manner, he wanted the cattle to associate the sound of the bucket with feed so they’d come to him. Whilst recognising that these are independent animals, Alex uses care to ensure certain behaviour from the grazing cattle. The relationship between human and animal gets formed by care. 

Care also makes humans distinct from animals through their ability to care for the whole Ashdown Forest’s ecology. Douglas repeatedly said, ‘I belong to the place, I’m part of the place, I serve the place.’ This sentiment encompasses the landscape of the Ashdown Forest. There’s a profound sense that the conservationists were caring for the Forest as a whole ecosystem. Ultimately, this view stems from how dependent the forest is on human interaction. Without humans (and their animals) removing the alkaline and nutrient-rich invasive plants, the heathland ecology would become a woodland. Paul illuminated this by saying that the Ashdown Forest is a ‘man-maintained place’. Again, he was discussing caring for the whole landscape and its rare ecology. While grazing animals have their natural instincts instrumentalised, conservationists serve the higher purpose of caring for the whole ecosystem.

Articulating a nature/culture division in the Ashdown Forest means accepting some rather contradictory truths. The conservators are deeply aware that the Ashdown Forest isn’t a pastoral, unspoiled wilderness and would regularly question the point of conserving a specific ecology. At the same time, saying something ‘wasn’t natural’ is a common way to disparage a practice. There was a sense of something being natural, even if it couldn’t always be found in the contemporary Ashdown Forest. The best way to demonstrate this is through an example.

On a warm but cloudy afternoon, I was having a cup of tea with Freddy and Paul behind the conservationists centre. We had been discussing tearing out the common wildflower, ragwort, an activity I had been taking part in that morning with Freddy. The seeds of ragwort can be toxic to horses if they get blown into their feed. As we were leaning against the wall, Paul made a comment that I kept turning over in my brain for the next few months. He said ‘I wish I could float between the human world and the natural world’ and I wish to ‘be in the natural world with a conservation mind’.

Paul’s first statement implies that presently, he can’t enter the natural world. He just wishes he could. Even if he could become part of nature, his second statement implies that he would retain a human character because he has a ‘conservation mind’. Within all these statements, humans are separate from the natural world. Humans have a certain inherent character that means they can’t become part of nature. So, what forms this division between human and natural? What makes a human?

It was only later that I thought perhaps care underpins this division between ‘the human world and the natural world’. The ability to care for the environment as a whole is experienced as a profound difference between the natural and the human. Care is a material to build the division between nature and culture. The Ashdown Forest’s conservationists don’t believe that grazing animals are caring for the ecosystem as a whole. They are simply fulfilling their evolutionary niche. Conservationists can get awfully close to this natural world, but they aren’t truly entering it. These conservationists might want to transgress this boundary, but they believe they can’t. So, conservationists deeply care for the nature that they see themselves as separate from nature.

Brian Short writes that if you stand on a hill and look across the Forest, you can read the history of human alterations to the soil pH. One can see patches were land owners heaped manure to create nutrient rich grass lawns around their manors (Short 2022:17). In a similar way, we can look across the landscape and see care. In the Ashdown Forest, care flows like a stream. It carves itself onto the landscape and simultaneously provides a space for multispecies communities to thrive. The nature of care shapes the landscape. Care is also used to construct a recursive ideology. Without the idea of care for the whole landscape, the specific nature/culture division found among the conservationists would be impossible.

Patrick Thomson is a third year HSPS student at the University of Cambridge. He is interested in the study of nature, time, ethics and government. He enjoys country music and hockey.

References

Bagley, C. 1997. Bovine Respiratory Disease. Utah Sate University Extension.

Scott, J. 2017. Against the grain: a deep history of the earliest states. Yale University Press.

Short, B. 2022. ‘Turbulent Foresters’: A Landscape Biography of Ashdown Forest. Boydell and Brewer.

Van Doreen, T. 2014. Flight Ways: Life and Loss at the Edge of Extinction. Columbia University Press.

Affirmation, Transformation, Freedom

My 2021 fieldwork explored mind–body dualisms among transmasculine (female-to-male and non-binary) young adults in urban Finland. On the basis of the material collected, I argued that the malleability of the Finnish term sukupuoli (which can mean ‘biological sex’, ‘gender’ or ‘gender expression’) informs contingent experiences of bodily distress or ‘dysphoria’. I described how my informants oscillated, sometimes within the space of a single sentence, between defining sukupuoli as a state of mind-over-matter, as separately informed by mind and body, and, in some instances, as a series of cultural signifiers through which femininity, masculinity and androgyny are enacted (Franklin 2022). A focus on ‘care’ – to which the Finnish terms hoitaa (‘to provide care’), hoito (‘care provision’), hoiva (‘“non-medical” care’) and välittää (‘to care about’) are roughly equivalent – augments these findings. The conceptions are, I suggest, informed by three distinct and often contradictory interpretations of when and how ‘care’ qualifies as beneficial and humane. In turn, these logics inform and are informed by dualistic understandings of the relationship between mind and body, all of which shapes my informants’ navigation of friendship, healthcare and family life. Scholarship involving typologies of care-related “repertoires” or “logics” (see e.g., Pols 2006; Mol 2008) has often focused on how to ‘best’ facilitate care. By contrast, my interest here is in pinpointing the ways in which discrete ontological understandings of care might generate interpersonal and internal dissonance.

The three clashing logics of care that correspond to three conceptions of sukupuoli were particularly visible in my conversations with Niko, a trans student in his late teens. In the first case, defining sukupuoli as a matter of psychological self-definition, as advanced with particular vigour by Seta (LGBTI Rights in Finland) and other activist bodies (Seta 2023), presupposes that ‘care’ for transgender people entails affirming sukupuoli-identity (sukupuoli-identiteetti) independently of medical transition or aesthetic performativity. When discussing his experience of “coming out”, Niko presented his grandparents’ willingness to call him by his chosen name (pre-medical transition) as proof that they “really truly cared about me” (ihan oikeesti välitti musta) despite the generational divide between them making the change “a lot to swallow”. Similarly, for Niko, whenever his friends linguistically affirm his status as a ‘man’, they are enabling him to maintain a healthy social life both ensuring that he need not “prove myself to them” and also demonstrating that “their views on sukupuoli are much like my own.”

In the second case, defining sukupuoli as formed by minds and bodies – which, for trans people, do not align with one another, hence the necessity of medical transition – assumes that transgender care is a facilitation of the process of ‘fixing’ (korjata) one’s physiology. Medical transformation, then, is not what is ultimately meant by ‘care’ in this context. Rather, hormonal and surgical interventions serve as a means to the end that is mind/body alignment. The notion of needing to heal a mismatch between mind and body would, in turn, not be conceptually possible without implicit reference to Cartesian dualism. This understanding of care was as central to Niko’s account as was his focus on verbal affirmation. Before being given the diagnosis of Gender Dysphoria (GD, sukupuolidysforia) required for government-funded medical treatments, Niko was first diagnosed with Moderate Depression and Generalised Anxiety Disorder, both of which he views as “linked to my sukupuoli” because “my mental wellbeing degenerated when I experienced bad dysphoric days.” However, the doctors and psychologists deliberating whether or not to prescribe him masculinising hormones entertained the possibility that Niko’s discontent in his body might be informed by his depressive symptoms. For Niko, their initial hesitancy to encourage bodily transformation constituted a failure to provide adequate care: “They just wanted a so-called medical explanation for my transness, rather than to actually care for me.”

Finally, on the occasions that sukupuoli is equated with a series of performative gestures and products encompassing, for instance, clothing, cosmetics and mannerisms, transgender ‘care’ becomes a form of negative liberty centred around the freedom to engage in acts often broadly termed ‘self-expression’ (itseilmaisu). Niko invoked this definition in reference to his behaviour as a child, stating that “I was already different in many ways from the other ‘girls’ my age – I liked to play and dress the way I liked […] I was never very girly.” After grappling with doubts about his sukupuoli at the age of twelve, Niko started identifying as trans within the following year, as it was only by resisting the “societal norm” to adopt feminine gendered signifiers such as long hair and makeup that he was able to reign in his feelings of “extreme anxiety”. While some peers and strangers made their scorn for his masculine presentation known, his immediate family and friends did not interfere with his preference for a short haircut and clothing designed for men. This freedom to detach his looks and behaviour from contemporary Finnish notions of ‘girliness’ was, for Niko, a signal that he was lucky to have loved ones who cared about his “wellbeing” (hyvinvointi).

In each facet of Niko’s account, we see that ‘care’ is construed as a means to a somewhat different end. If sukupuoli is an innate state of mind unrelated to sexed physiology or gendered performance, ‘care’ for transmasculine youth is a series of practices that affirms a fundamental separation of the self from womanhood. The use of chosen names and (English) gendered pronouns (often displayed on social media and discussed with friends even in Finnish, in which no pronouns are gendered) becomes highlighted as a means to care for a trans friend or family member. If sukupuoli is a dual composite of minds and bodies, it is by assuming that it is the latter that may require transformation that medical providers can ensure care. If sukupuoli rests on performativity, care is a facilitation of negative liberty centred around the freedom to adopt the gendered signifiers of one’s choosing.

Contradictions of Care

My informants’ social lives and medical negotiations were heavily informed by the contradictions between these three logics of care. Firstly, the logic of care-as-affirmation conflicts with that of care-as-transformation. Where the former severs sukupuoli from bodies, the latter assumes that a trans person’s sukupuoli is realised through corrective processes enacted on the flesh of a patient. The resulting conundrum is apparent in the fact that while Niko’s frustration with his healthcare providers was based on their expectation of a “medical explanation for my transness”, his own expectation that testosterone injections would salvage his mental health implies a need for bodily change inconsistent with care-as-affirmation. When I asked Niko if his decision to start injecting testosterone involved a sense of being “born in the wrong body”, he grew visibly uncomfortable, stating in an apologetic tone that “I really can’t come up with anything sensical for that”. In an attempt to reassure him, I mentioned that many other informants had also struggled with the question, a pattern which in itself indicates an overarching interpersonal and internal clash between a sense of care as metaphysical affirmation and care as transforming parts that are, by implication, in need of ‘fixing’.

Care-as-affirmation also sits in some tension with care-as-freedom. For Eina, a non-binary activist, entering a new social circle of artists in 2020 brought with it a freedom to experiment with androgyny that contrasted with the sanctions of their religious upbringing. Eina has particularly vivid memories of getting a buzzcut: “I felt so strongly that my femininity fell to the floor along with my hair… it’s funny, how powerful that was, because it’s only hair… if hair is all it takes, it really didn’t take much.” Equally central to this period was the company of a friend who, in the past, had introduced Eina to the basics of feminine care. As young adults, ‘care’ took on a different form, with the friend, now a Gender Studies undergraduate, reassuring Eina that desiring medical care and experiencing “distress” at being “misgendered” is not the only “valid” way to be trans. However, Eina simultaneously presents their parents’ ongoing habit of referring to them as a “daughter” as a failure to give care: “My mum misgenders me every fucking time, and when I correct her, she’s like, I’ve seen you as a girl for 21 years… it’s really embarrassing that my mum can’t bring herself to care about this […] I cut [my family holiday] short last year, that’s how much this was pissing me off.” Ultimately, by juggling the view of sukupuoli as defined by performativity with that of sukupuoli as psychically innate, Eina must also juggle conceptions of care as an individual freedom to self-style, and care as entailing external validation for which loved ones are particularly responsible.

Let us now turn to the relationship between care-as-transformation and care-as-performance. Miro, a trans man in his thirties, began his medical transition in 2013 after several years of confusion: “What scared me the most was the idea of ending up as an interminable hybrid… but the effects of trans care [transhoidot] seemed desirable, and being sometimes read as a man when I dressed like one felt good. Eventually I realised that if I want the care, I have the right to the care, whether or not I fit the mould of a trans person that doesn’t despise their body.” In the wake of receiving ‘trans care’ (testosterone injections and surgical chest masculinisation) Miro realised that “being trans is mostly a medical thing for me”. Despite his view of himself as ‘trans’ being catalysed by his delight at being read as male on the basis of masculine stylistics – not by any intense need to modify his body – Miro believes that his brain chemistry is “different from the majority of people”. On one hand, his nod to performativity is logically inconsistent with his eventual emphasis on care-as-transformation. Nonetheless, it is also worth noting that Miro’s experience with sukupuoli-related care has primarily been a positive one. He is, in his own words, “in better health on testosterone”.

Understanding the significance of logics of care to Finnish gendered language, common-sense Cartesianism and transmasculine embodiment shows that the overlapping tensions involved are implicated in my informants’ pursuits of bearable bodiliness and ‘caring’ social relationships. Two concluding remarks are appropriate here, the first of which concerns contestations over trans identity and healthcare. On one hand, political debates between transactivists, medical professionals and party politicians have declined in fervour following the reform of Finnish transgender legislation last April, which separated the legal recognition of sukupuoli from medical transition. However, the question of whether the same can be said of more intimate conflicts over care and sociality in the lives of transgender youth is a far more open one, and should not be subsumed into discourses of legal case-closure. Secondly, anthropological studies of gender diversity are poised to exceed their current contributions to the anthropology of care. In turn, existing awareness of the relevance of care to the articulation of hierarchy and belonging (see e.g., Mulla 2014; Yarris 2017; Mody 2020) is a worthwhile resource for a field of anthropology that would do well to approach queer activist logics as one potential facet of transgender life among many.

Tarina Franklin is an MPhil student in Social Anthropological Research at the University of Cambridge, whose current research is centred on body modification. She has previously written on transmasculinity and embodiment in Finland, and on discourses on race and the far right. Beyond the academy, she has worked in publishing and political consultancy in Helsinki, as well as in clinical consultancy in London, and contributed to projects such as the Uralic Languages and Peoples Website and the Festival of Political Photography.

References

Franklin, T. Z. 2022. “Divide and Conquer: Mind-Body Dualisms in Language and Body Image among Transmasculine Young Adults in Urban Finland.” Cambridge Journal of Human Behaviour 1(1): 67–75.

Ministry of Social Affairs and Health 2023. Act on Legal Recognition of Gender enters into force on 3 April 2023 [Press Release] (available online: https://valtioneuvosto.fi/en/-//1271139/act-on-legal-recognition-of-gender-enters-into-force-on-3-april-2023, accessed 20 December 2023).

Mody, P. 2020. “Care and Resistance.” Anthropology and Humanism 45(2):194–201.

Mol, A. 2008. The Logic of Care: Health and the Problem of Patient Choice. London: Routledge.

Mulla, S. 2014. The Violence of Care: Rape Victims, Forensic Nurses, and Sexual Assault Intervention. New York and London: New York University Press.

Pols, J, 2006. “Washing the Citizen: Washing, Cleanliness and Citizenship in Mental Health Care.” Cult Med Psychiatry 30(1): 77–104.

Seta. 2023. LGBTI Rights in Finland – Seta (available online: https://en.seta.fi/, accessed 18 December 2023).

Yarris, K. 2017. Care Across Generations: Solidarity and Sacrifice in Transnational Families. Stanford: Stanford University Press.

Sex worker agency is fundamentally shaped by networks of care: both between workers and clients, and between workers themselves. Sex workers are placed in a uniquely challenging position in terms of worker agency, facing state criminalisation and societal stigma alongside the challenges to collective organisation faced by informal sector workers more generally. Consequently, the agency of sex workers manifests in ways that stretch beyond traditional understandings of worker collective action. This article will first establish theoretical understanding of sex work’s affective nature and its position on the spectrum of worker agency. It will then explore how care shapes sex worker agency through responses to criminalisation and relationships with clients. This discussion will make reference to three ethnographic works: Vijayakumar et al’s 2015 study of the Karnataka Sex Workers Union (KSWU) in India; Gutiérrez Garza’s 2022 study of gift exchanges between Latin American sex workers and their clients in London; and Jackson’s 2013 work on a US sex worker rights organisation, the Desiree Alliance. Ultimately, it will argue that, due to sex work’s affective nature and the influence of state criminalisation, sex worker agency is deeply influenced by networks of care. A consideration of care is therefore crucial to understanding how sex workers can (and do) advocate for themselves and each other.

Sex work sits at the intersection of many categories of labour: it is informal service work as well as being immaterial and affective. Sex work’s informal nature refers to the fact that it sits outside of the formal economy. As it is criminalised in many countries, it is therefore not regulated. Though created through physical effort, the product of sex work is largely immaterial. The work is simultaneously enacted through interaction between the worker and client, and also produces further relations (Lazar 2023:96). Sex work is ultimately a service, providing sexual – and to some degree emotional, romantic or therapeutic – satisfaction. It is therefore understood as affective labour (Lazar 2023:90), as it seeks to produce a particular affect in the client, such as sexual arousal, emotional intimacy, or simply entertainment (Vijayakumar et al 2015:82). Although people of all genders are engaged in sex work, this labour is deeply feminised, as with affective labour more broadly (Vijayakumar et al 2015:82). Sex work’s position as affective labour has significant implications for the expression of both individual and collective agency.

Worker agency sits on a spectrum, ranging from more traditional and formal collective organising such as unions, to more individualised and fragmentary forms of agency. Despite the prevalence of traditional industrial unions falling due to neoliberalism, austerity, and financialisation (Lazar 2022:95), sex workers are now officially unionised in many countries (Lopez 2015:158). The influence of affect and networks of care, however, influence where sex worker agency manifests on this spectrum. Vijayakumar et al offers an account of the Karnataka Sex Workers Union (KSWU), an organisation of approximately 2500 sex workers in India (Vijayakumar et al 2015:85). This represents a manifestation of sex worker agency that aligns more closely with traditional unionisation, yet KSWU directs its main efforts towards the state: demanding decriminalisation, social services, and legal protection (2015:90). Similarly, Jackson’s (2013) exploration of the Desiree Alliance (DA), a US sex worker rights organisation, demonstrates how sex worker unionisation often blurs the lines between traditional unionism and social activism. She describes how the DA has characteristics of “social movement unionism”: uniting community building through collective identity formation, and political advocacy (2013:4). Due to the criminalisation of sex work in the US, the task of the union extends to include contesting criminalisation, fighting for citizenship rights, and building community (2013:5). The DA relies upon a small dedicated group of activists who provide a network of social support, and immediate relief from the effects of criminalisation (2013:iii). These examples demonstrate how the nature of sex work often dictates how sex worker agency can manifest.

The impact of criminalisation is a challenge quite unique to sex work. Sex workers often face the challenge of navigating repression from the state and the criminal justice system alongside fighting for recognition as legitimate workers. Due to such criminalisation, sex workers are “scattered and hidden” (Vijayakumar et al. 2015:80), working on the streets and in private locations, and organising with clients through word of mouth or phone contacts, all of which make collective organising a challenge. The influence of criminalisation makes networks of care and support between sex workers a crucial part of survival. KSWU provides a poignant example of this. As Vijayakumar et al explain, KSWU, out of necessity, transcends the boundaries of the traditional union (2015:87). Its driving force is to “forge bonds of empathy and solidarity”, maintaining strong elements of fun and laughter (2015:86). Union members support each other in addressing violence, emotional support and civil rights, and operate a 24/7 helpline (2015:87). They share food and housing, offer childcare, and support each other to access healthcare. This central network of care provides members, who are likely isolated and marginalised from wider society, with a community of support. In the midst of stigma and criminalisation, this community care is an act of resistance in itself.

Care also shapes sex worker agency through the influence of strong and enduring attachments between workers and their clients. These relationships can both enable and prevent collective mobilisation (Lazar 2023:90). Affective labourers are often precariously employed, isolated from one another, and feel a sense of responsibility for their clients and the relationships they have formed, all of which stand in the way of traditional forms of labour mobilisations such as strikes and legal challenges (2023:104). Emotional attachments may prevent sex workers collectively demanding better conditions, as they are caught between their own needs and the needs of their client. As sex work (and care work more generally) involves building intimate relationships with long term clients, sex workers may understandably hold mixed feelings about organising for improved conditions. On the other hand, interactions within these very same relationships can also be seen as instances of individuals negotiating the terms of their work on a day to day basis (2023:107). These enduring relationships may in fact form a part of what improved working conditions truly look like.

Gutiérrez Garza (2022) provides a case study of how sex workers individually navigate their own autonomy within their position as workers. She describes how, for her interlocutors, in the context of precarious, stigmatised, criminalised, and dangerous work, receiving gifts from clients becomes an important means to invest in “imaginative futures” (2022:3). Gift giving conceals, in part, the precarity of the sex workers situation, and allows clients to conceal attempts to exploit these workers for their time, emotional and sexual labour (Gutiérrez Garza 2022:9). Regular clients, over time, built up relationships that clouded the “sexual commercial transaction”(2022:2), entangling sex workers up in relationships that essentially involved giving clients the “girlfriend experience” for free (2022:5). These affective relationships are of course deeply tied into the feminisation of sex work: the emotional and therapeutic service the sex worker provides were not recognised as legitimate work that requires payment. These gifts allowed clients to “take advantage of the commodification of intimacy” (2022:9), but at the same time, provide sex workers with a “breadth of agency”, allowing them to imagine a future where they were economically independent, free from criminalisation (2022:6). These affective entanglements between sex workers and their clients therefore reflect complex forms of agency moulded by the pracarity of sex work as a form of affective and criminalised labour.

Support networks formed to cope with the influence of criminalisation, as well as deep emotional ties and feelings of obligation towards clients, are instrumental in the formation of sex worker agency. This agency can look relatively similar to traditional industrial workers unions, can be more explicitly oriented towards social change and community care, or can simply involve individual sex workers taking the time to build relationships with their clients, to make their work day more pleasurable. Ultimately, sex worker agency is shaped by the ongoing process of people navigating complex relationships of care with both their clients and their community.

Oscar Sharples (he/they) is a final year Human, Social and Political Sciences student specialising in Sociology and Social Anthropology. He is a proud member of Lucy Cavendish College. 

References

Gutiérrez Garza, A. 2022. The intimacy of the gift in the economy of sex work. American Anthropologist, 124: 4, 767-777.

Jackson, C. 2013. Sex Worker Rights Organizing as Social Movement Unionism: Responding to the Criminalization of Work [Thesis]. University of Nevada.

Lazar, S. 2022. Labour organisation: ‘Traditional’ trade unions and beyond. In The Routledge Handbook of the Anthropology of Labor. 95-106. Routledge.

Lazar, S. 2023. How We Struggle: A Political Anthropology of Labour. Pluto Press.

Lopez, A. 2015. ‘Talking and acting for our rights: the interview in an action-research setting’. In Extraordinary Encounters: Authenticity and the Interview. 157-174. Berghahn Books.

Vijayakumar, G., Shubha, S., & Panchanadeswaran, S. 2015. ‘As Human Beings and As Workers’: Sex Worker Unionization in Karnataka, India. Global Labour Journal, 6:10, 79-96.

Last year, when the Department of Education announced a review into the Relationship, Sex and Health Education (RSHE) curriculum in English schools, Prime Minister Rishi Sunak expected that the review would ensure schools were not teaching “inappropriate and contested content” (Busby 2023). The RSHE curriculum review was prompted by a petition from more than fifty Conservative MPs, concerned that “children are being indoctrinated with radical and unevidenced ideologies about sex and gender” (Sex education review announced after MPs raise concerns 2023). Contested content is an apt description of the uneasy politics of sex education, in which the veracity of sex and gender identities, the role of caregivers, parents and the education system; diversity, inclusivity and ‘traditional family values’ are all implicated.   

In a post-Trumpian world of alternative facts and post-truths, divisive debates about sex education have thoroughly contemporary ring to them, but high stakes and grave risks in how states and societies govern sexuality are nothing new. Western institutionalised sex education has been shaped by societal consternation for grave but incalculable risk since its origins in turn of the century America. In this article I will apply the concept of incalculable risk to the two most prominent sex education models of early 20^th century America, Comstockery and social hygiene, revealing an uneasy intersection of state care and intimate citizenry, not dissimilar to the sex education discourse today.

What is incalculable risk? The concept is likely to be more familiar to students of security studies than anthropology. The incalculable risk paradigm holds that pre-emptive measures must be taken to prevent potentially catastrophic consequences (Arnoldussen 2009: 260). These risks to society may be hard to calculate and predict, but they are always imminent (Diprose 2008). In the post-industrial period, the ‘momentum of innovation’ in society increasingly evades the control of institutions which previously gave security to public life (Beck 1995). The acceleration of technological and scientific capabilities mean that outcomes may not be knowable before they occur. Due to this perpetual unknowability, in which scale and proximity is unpredictable, incalculable risk demands a perpetual state of alertness and pre-emption (De Goede 2008). Human fallibility is a liability which requires governance and care.  ‘In the absence of a single cause of harm (such as God, or a single external enemy) the salient cause of harm is now taken to be unpredictable human agency,’ (Diprose 2008: 141). Disciplinary governance whether institutional or self-surveillance is fundamental to incalculable risk paradigms and inherently linked maintaining order (Rabinow & Rose 2006). Lastly, in incalculable risk scholarship, societal anxiety is heightened around risks of low probability but high consequence, meaning that risks less likely to happen but which present the greater threat to humanity are considered of greatest concern (Giddens 1999: 134).

Incalculable risk has been analysed in varied domains, from legal and philosophical (Baker & Simon 2002; Elward 2002), criminal (Ericson 2007) and public health (Diprose 2008), to biosecurity, the war on terror (Cooper 2006) and international security (Collier & Lakoff 2008). Scholarship has often located the origins of incalculable risk paradigms within the late 20th or early 21st centuries (Cooper 2006). I argue, however, that considering incalculable risk as central to public sex education in early 20^th century America suggests a pervasive sense of alarm about the disintegration of societal morality, citizenship and familial roles. Applying a framework of incalculable risk to these two competing sex education philosophies illustrates how the concept of care and governance was very closely linked to preventing imminent catastrophe; in other words, in pre-emption of risks that were hard to predict, imminent and the result of human agency left untended. 

The dominant sex education discourses at the turn of the century were the Victorian ‘Comstockery’ campaign and the social hygiene movement. Although both ideologies were founded on competing approaches to sex education, both sought to remedy the concerns of the day in response to near apocalyptic outcomes if the state’s care for its adolescent sexual citizens was mismanaged. Anthony Comstock promoted the idea that sex for anything other than reproduction was an immoral temptation and any sex education information would irreversibly corrupt society. Comstock was a postal inspector, founder of the New York Society for the Suppression of Vice, and later politician who became known for his determination to suppress any public discourse around sexuality. Comstock successfully campaigned for The Comstock Act of 1873 and subsequent ‘mini-Comstock’ anti-obscenity legislations. These laws criminalised the dissemination of any information relating to sexuality, including pornography, contraception and sexual health publications (Tone 2001:254). Comstock’s rhetoric aligned with prevalent Victorian thought on purity and perversion. Corrupting the purity of youth could be disastrous and immediate, ‘the imagination is defiled and perverted, thoughts are corrupted, the conscience is seared, the heart is hardened and the soul damned,’(Comstock 1909: 404).

A rival to the prudery of Comstock was the social hygiene movement, which campaigned for scientific sex education and awareness programs to prevent venereal diseases. Established by medical doctor Dr Prince Morrow in the early 1900s, it sought to eradicate the ‘conspiracy of silence’ around sexuality through education (Hall 1904: 24–25). Morrow argued that educating citizens about venereal disease would be the most effective way to halt its seemingly unending spread, and to protect the institution of marriage (Moran 2000). The movement was lent legitimacy by scientific breakthroughs, the development of syphilis detection and treatments, and, thanks to advances in rubber production, more widespread adoption of condoms (Hall 1904; Jensen 2010: 26–27). 

In the imaginary futures of Morrow and Comstock, societal dangers resulting from unregulated sexuality were difficult to reliably predict and imminently damaging to society. The acceleration of urbanisation and immigration in early 20^th century America meant that traditional family dynamics, Anglo-Saxon race hegemony, and scientific understanding of stages in human development were shifting and evolving. Sex education ideologies, despite their opposing motives and juxtaposing visions, sought to organise and remedy many of the dangers that the new millennium presented. Questions of race and the role of the adolescent were key areas of concern which both Morrow’s social hygienists and Comstock’s supporters sought to address. 

The ‘invention’ of the adolescent as a new type of agent created a need for sexual regulation in early 20th century American society and highlighted the fallibility of the human condition. American society at the turn of the century saw the creation of adolescence as a distinct phase in human development in the western imaginary (Moran 2000: 15). Mass schooling presented an effective means to provide responsible state care and cultivate social mores in young populations. To draw from Foucault, the classroom enabled disciplinary technologies which controlled not only processes of normalisation but also regulated time and bodies (Foucault et al. 2010). As nutritional outcomes improved, children experienced puberty and reached sexual maturity earlier than ever before. The median age of marriage in the USA rose to 26 years old, which created a lengthy sexual probationary period of potential temptation between puberty and marriage (Hall 1904; Moran 2000). Young people’s sexuality urgently required governance and care (Tait 1993). The cause of potential catastrophe was not God, or the state, but that youth might receive the wrong guidance. 

Underlying the social silence around sexuality was a Victorian assumption that children were naturally innocent, and only ‘became interested in sex after exposure to outside influences’ (Jensen 2010: 4). This was central to Comstock’s belief that all sexual materials should be purged from society. For Comstock, obscene materials could drive a child towards a life of debauchery and excessive masturbation, ultimately resulting in insanity or death (Jensen 2010: 6). Adolescent agency was completely at the whim of a virile force and the youth must be sheltered from it to prevent moral catastrophe. Social hygienists also believed that adolescents would respond to their developing sexuality in dangerous and perhaps catastrophic ways if not managed. Fears that promiscuous young men would pass on venereal diseases to their wives and unborn children prompted growing concern that marriage was in decline. As the most malleable social group, adolescents, particularly male adolescents, were critical to raising awareness of venereal disease and halting its spread. Adolescent fallibility remained a prominent threat, but, given the right instruction, reason might prevail. Fear of adolescent fallibility were driving forces for both social hygienist and Comstockery campaigns. 

White racial purity in American society was also under threat to the social order by both Morrow’s social hygienists and advocates of Comstockery. Comstock praised the notion of a traditional, European nuclear family which nurtured childhood innocence. He feared their demise if sex education and rampant sexuality became widespread. His reverence for these institutions has been read as a covert call for the preservation of a white hegemony (Beisel 1998: 39). For Morrow, the sexual literacy of a rational, educated public was very much linked to the so-called science of eugenics. Then-President Theodore Roosevelt’s speech on the ‘New Woman’ was widely distributed and encapsulates many popular eugenic sentiments of the time. Roosevelt lamented that Anglo-Saxon American women were committing ‘race suicide’ by failing to have large families. Roosevelt implored white women to ‘bear and bring up … healthy children, sound in body and in character, so that the race shall increase and not decrease’ (Jensen 2010: 19). To Morrow’s social hygienists, reproduction was implicitly linked to preventing the decline of white citizens in a country experiencing mass multicultural immigration (Hall 1904). Social anxiety over risks of low probability but catastrophic consequences, made worse by the unpredictable state of being that was adolescence, could amount to the decline of the Anglo-Saxon race and the deterioration of motherhood and social order. 

Early public sex education in the United States demonstrates a pervasive sense of alarm about the disintegration of social morality, of white hegemony, and the socialisation of young people into upright citizens. Societal care for its citizens’ wellbeing, in both Comstockery and the social hygiene movement, was inextricable from governance and control; risk and responsibility. Ideologies of societal guardianship in the face of these incalculably devastating and potentially imminent risks reveal the centrality of care to moral citizenship and visions of a ‘good society’ (Thelen 2015). As has been explored by many anthropologists, these structures of governance and care are often embedded within systems which reproduce state violence and gendered, racial or generational inequalities (Amrith 2017; Buch 2013; Cook & Trundle 2020; Diamond 1995; Drotbohm 2022; Rivas 2003). Whether it is within ideologically opposed visions of sex education in early 20^th century America, or the language of catastrophe surrounding RSHE curriculum in current debates, incalculable risk paradigms illuminate valuable questions about ideologies of care. What do they protect and construct, and for whom? Sex education remains contested content indeed. 

Samantha Hartley is studying an MPhil in Social Anthropological Research at the University of Cambridge. Her research focuses on the intersection of reproductive governance and ‘fem tech’ medical technologies. Samantha previously worked for the Australian Department of Foreign Affairs and Trade.

References

Amrith, M. 2017. Caring for Strangers: Filipino Medical Workers in Asia. NIAS Press.

Arnoldussen, T. 2009. Precautionary logic and a policy of moderation. Erasmus Law Review 2, 259–286.

Baker, T. & J. Simon 2002. Embracing risk. In Embracing Risk, the Changing Culture of Insurance and responsibility (eds) T. Baker & J. Simon, 1–26. Chicago, IL: University of Chicago Press.

Beck, U. 1995. Risk society and the provident state, vol. 40. In Risk, Environment and Modernity: Towards a New Ecology (ed) B. S. Scott Lash, 27–43. (1st edition). (Theory, Culture & Society). London: SAGE Publications.

Beisel, N. K. 1998. Imperiled Innocents: Anthony Comstock and Family Reproduction in Victorian America: 67. (Revised ed. edition). Princeton, NJ: Princeton University Press.

Buch, E. D. 2013. Senses of care: Embodying inequality and sustaining personhood in the home care of older adults in Chicago. American ethnologist 40, 637–650.

Busby, E. 2023. Government to review sex education amid concerns about ‘inappropriate’ lessons. Evening Standard (available on-line: https://www.standard.co.uk/news/politics/conservative-rishi-sunak-government-relationships-prime-minister-b1065719.html, accessed 16 December 2023).

Collier, S. J. & A. Lakoff 2008. Distributed Preparedness: The Spatial Logic of Domestic Security in the United States. Environment and Planning D: Society and Space 26, 7–28.

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Cook, J. & C. Trundle 2020. Unsettled Care: Temporality, Subjectivity, and the Uneasy Ethics of Care. Anthropology and Humanism 45, 178–183.

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Sitting up front in a bumpy minibus, I watched the landscape change as I looked at the hedges hemming rolling fields with villages dotted across them, church spires and clusters of houses scattered throughout. We bundled round the lanes and passed a bus stop, pausing 100 metres further on in front of a small bungalow. The driver stepped out, opened the door, and helped an elderly lady board with her shopping bags, not yet filled with the week’s provisions. As the lady joined her friends in the back of the bus, I asked Bert, the driver, about the caring role he took on. He replied:

“I’m a driver: I don’t help people that much. I’m not a carer or anything like that. I don’t do things for free.”

Bert’s quote contains remnants of many discursive tropes that surround caring and working in Britain. Care and work are placed in opposition to one another, as evidenced by the foregrounding of Bert’s job title, ‘driver’, with the role of ‘carer’ commonly associated with ‘doing things for free’. Using the context of research I carried out with a community transport charity, I will explore the tensions that caring and working can bring in practice, and consider how dependency stigmas are experienced by the users of the service. I will consider gifting as a mediation of these issues and propose the concept of ‘caring-work’ as a way of emphasising the dynamic relationships involved in the network of care I observed.

I embarked on my research with a community transport charity in the south of England, which I shall call Forest Green Community Transport through an interest in rurality and mobility, stemming from a place of personal concern and frustration. Having grown up in a rural area in England with much of my adolescent socialising at the mercy of the one bus that ran through my village, I knew all too well the difficulty of life in the countryside for those that do not drive. Over the last decade more than 25% of rural bus routes have been cut^[i] meaning that county councils or community initiatives step in. Forest Green Community Transport (FGCT) provides mobility to elderly, rurally isolated, and disabled people across the area it serves. One type of key service offered is demand-responsive ‘DART’ services, that function as a bus route based on demand – often running once or twice a week, they make a route through villages towards a town centre. This allows users to go to the shops, visit the post office or bank, or meet up with their friends. There are also ‘dial-a-ride’ services, where individuals or small groups can arrange a trip like a taxi – for example, to take them to a doctor’s appointment, go to the hairdressers, or to go to a social club. Groups such as an Alzheimer’s society or an AgeUK lunch club could also hire the bus to pick up members and bring them to their events. 

When I first turned up at the abandoned airfield where the buses are kept, I was anticipating talking to the passengers about the freedoms that the bus afforded them, the places they could go, and their experience of rural isolation and life. Although this was a key topic of conversations, with passengers commonly invoking the terms ‘lifesaver’ or ‘lifeline’ to describe FGCT, I was much more struck by the way in which people valued the experience of the journey itself more than the destination they could reach. This was in part due to the social connections forged between passengers who often lived alone or were isolated from friends. The journey was an opportunity to chat, talk about life, and complain about the issues of the day. It was also a way to be involved in a network of care in which the drivers played a key role.

I saw drivers taking shopping up to third floor flats, spending ten minutes helping a nervous and frail woman down from the bus on the motorised platform for wheelchair users, and calling family members to find spare keys of people who had forgotten where they put them. I heard about people whose grave illness or even death had been discovered by the drivers of GFCT when they didn’t turn up for their lift, and the drivers noticed and cared, alerted families, investigated themselves, or called the police. Drivers routinely deviated from the official routes so they could drop people on a less busy part of the road, and often stopped at people’s houses instead of the allocated bus stop. They joked, sympathised, and listened with all passengers, remembering the details of their grandchildren, previous careers, or medical issues. Conversations that I assumed to be banal, like Len arriving at Brian’s house five minutes early to chat and ask if he went to boules last week turned out to be motivated by care: Len told me that he sees a detachment from activities like these as a warning signal for a possible decline in elderly health. He asks his father-in-law, who attends the same boules club, to let him know whether Brian goes the next week.

When I asked about these forms of care and community making I observed driver Nish told me ‘drivers don’t come into it, they’re just doing their job’. The next day as we pulled into the town centre bus station and passed a public bus, driver Len said ‘those bus drivers won’t get up and help. That’s the difference between us and them. If people struggle, they watch them struggle’. Nash and Len’s statements demonstrated two attitudes I found at GFCT – that it was ‘just a job’, and a recognition that there was an added layer of care and expectation of providing help.

There has been long-standing debate on the nature of care and attitudes to care in work, where it is asserted that ‘true care cannot be performed in the context of paid work’ (Lane, 2017: 4). GFCT’s position as a charity opened questions about the relationship between service, charity, and paid employment. It is often assumed that people engage in charity work, particularly volunteering, out of the ‘goodness of their heart’ and motivated by their care for the people or cause that the charity represents. Rosie Read has written about tensions between volunteers and waged workers at a charity providing online and telephone counselling in the UK (Read 2021). Volunteers harboured a worry that waged workers would not do it for ‘the right reasons’, displaying the attitude ‘if one is being paid to do it (…) is it really care’ (Lane 2017: 4). Does Bert’s statement that he ‘wouldn’t do it for free’ mean that he is incapable of showing true care to his passengers? Bert had gone ‘viral’ (in the modest sense of circulating the cyber-space of the local area and culminating in around 200 likes on Facebook) for a video posted that showed him waiting at a train station for a train to go past as he knew that the 8-year-old grandson of one of his regular passengers loved trains. As the boy was spending the holidays with his granny, Bert made an effort to deviate from schedule to watch the train go by, much to the enthusiastic delight of his young passenger. A comment on the video said it was ‘rare to see this kind of care nowadays’.

This comment touches on a long-standing attitude in Britain that care and community is deteriorating. This is coupled with steady cuts to services such as rural transport meaning that charities are increasingly being relied upon to provide services previously provided by the state (Read 2021). This can cause anxiety given the stigma often associated with receiving charity or being part of seemingly one way exchanges. In a study of UK rural car use, Shergold et al. found amongst elderly people without cars or who were unable to drive that ‘the use of lifts from friends and neighbours was often limited, as people might feel they were abusing friendship to seek lifts’ (2012: 77).  This demonstrates the difficulty that people can have navigating the intersections between sociality and dependency. The community transport model alleviates this anxiety around commodification of friendship by offering a clear service, yet within this service passengers also struggled with dependency dynamics. Shergold’s study found that using a car was an important measure of independence for their elderly interlocutors, and that feeling independent contributed highly to their well-being. Ethel, an elderly lady in a wheelchair caught me watching her as she wistfully watched cars going round a roundabout and said that she greatly missed having a car – ‘I was independent, you see’. While all passengers were extremely complimentary of, and grateful for, the service GFCT provided, they strove to assert independence within what could be a perceived reliance on charity or a lack of autonomy. Ethel, for example, refused to be helped while clipping the straps of the bus to her wheelchair, and male passengers, in particular, refused help carrying their shopping even if they appeared to be struggling. Despite the legal requirement for passengers on the minibus to wear seatbelts, Bert explained that he only made ‘little kids’ put them on as ‘people like to be responsible for themselves’.^[ii] 

Passengers often brought gifts for the drivers – I saw sweets, chocolates, home-made cakes, and apples from someone’s garden being presented to the drivers throughout my time there. On one particularly memorable day, when it was so hot my legs were stuck to the seat and opening the window only made it hotter, Fred hove into view in the wing mirror carrying a box of choc-ices that he presented to me and Nish, the driver I was with that day. The choc-ice was made even sweeter as I remembered how proudly frugal Fred was, with one of his favourite conversation points being just how crazy prices were getting and exactly how he was budgeting. Perhaps it is the stereotypical anthropologist that can’t help but look the gift horse in the mouth, but it felt as though people sometimes offered these gifts as an alternative form of payment. Possibly a way of mediating the service they received from the charity (which was free to them) and inserting a sense of exchange that made it closer to a normal public bus service. This has some parallels to the way that disabled communities in Kinshasa issue contractual documents when receiving money from begging, earning them the name ‘documentaires’, as a way of legitimating the one-way exchanges they engage in (Devlieger 2018). From this point of view, the fact that the drivers were paid, rather than volunteers, was helpful as it meant that passengers did not feel that they were unduly dependent on someone’s good nature, but that instead they were legitimate users of a service. While drivers were ‘just doing their job’, passengers were also reassured that they could rely on the drivers to care for them when needed.

There are many ambiguities and potentials for contradiction within the relationships that made up GFCT and the communities it both served and created. Drivers sometimes bemoaned the limitations that ‘just doing their job’ created – with Nish lamenting that ‘you want to do everything you can for these people, but in the end you are just the driver’.  This limitation, however, did not prevent them frequently going above what would be expected in the comparable role of a public bus driver. They consistently provided levels of care for their passengers which facilitated networks of care, community and friendship that made isolated individuals confident in the service and helped maintain their independence. However, this independence could also be felt as a stigmatised dependency on charity which passengers and drivers mediated by emphasising the paid nature of the drivers’ work and by creating a sense of fair exchange and compensation through gifting. These ambiguities are underlined by popular opposition between care and work and the associated idealisation of independence within the same ideologies at the root of the service cuts, paradoxically creating new dependencies on charity and community services. If I was that archetypal anthropologist, I could blame it all on neoliberalism, but so as not to be, I will let Carrie Lane do it for me: ‘neoliberal reforms have fostered levels of insecurity that dictate increased reliance on others to compensate for the withdrawal of government and corporate support’ (Lane 2017: 5)!

Tracing some of the caring dynamics at play in Green Forest Community Transport draws attention to the webs of dependency, ideology, labour and care that are present in many workplaces, charities, and even friendship networks. The troubling juxtaposition of care and work feeds into the ways that explicit care work is devalued in the United Kingdom, and across the globe, whether through low wages, or the expectation that those working in jobs associated with forms of care are doing it for something other than financial reasons. This has manifested in the critical reception to recent nursing and teaching strikes in the UK. While it is true that the care aspect of work is often rewarding, this does not pay rent, or put food on the table.^[iii] These discourses can also stigmatise those that receive care, which passengers may look to mediate by emphasising their receipt of service, rather than care. To do justice to these tensions, and those that the drivers felt in navigating their role at the intersection between service and care, I suggest that we embrace the framework ‘caring work’ to describe work that is of a caring nature but is not typical care or charity work. The ‘ing’ of caring emphasises the dynamic and active role that drivers have in shaping community and providing care, and highlights it as an intrinsic part of ‘just doing the job’.  I hope that this may provide a framework for considering the ways in which our work is caring, yet still work, and allows people to embrace being cared for, while still maintaining feelings of independence and autonomy.

Endnotes

^[i] https://www.countycouncilsnetwork.org.uk/rural-bus-services-at-a-historic-low-as-new-report-reveals-urban-locations-received-two-thirds-of-flagship-government-funding/

^[ii] Some drivers were stricter about this, and would put seatbelts on for passengers if they judged them to be particularly frail.

^[iii] Consider MP Simon Clarke’s comment that nurses who had to use foodbanks were simply not budgeting properly. https://www.bbc.co.uk/news/uk-england-tees-64317593

Flora Cooknell is a graduate student in the department of Social Anthropology funded by the ESRC. Her research is focused through the core question of how experiences of rurality intersect with and compound inequality and poverty in England. Through research in a village in the south of England, she hopes to bring together themes of landscape, belonging, kinship and (dis)connection to push against an idealised vision of life in the English countryside. By dissecting England’s ‘green and pleasant land’ she will provide critical insight into contemporary experiences of rurality as people maintain and navigate life.

References 

Devlieger, C. (2018). Contractual dependencies: American Ethnologist, 45(4), 455–469. https://doi.org/10.1111/amet.12701

Lane, C. M. (2017). The Work of Care, Caring at Work: An Introduction. Anthropology of Work Review, 38(1), 3–7. https://doi.org/10.1111/awr.12107

Read, R. (2021). Unwaged labour intensified: Volunteer management and work targets at a UK charity. The Sociological Review, 69(1), 223–239. https://doi.org/10.1177/0038026120938291

Shergold, I., Parkhurst, G., & Musselwhite, C. (2012). Rural car dependence: An emerging barrier to community activity for older people. Transportation Planning and Technology, 35(1), 69–85. https://doi.org/10.1080/03081060.2012.635417

To see myself as in a story, or a series of stories, is to see my life in time as stretching out toward possibilities (both hopeful and fearful) which I have some influence in bringing about (Mattingly 1994: 817).

If any of our readers have experienced someone unwell, be it a broken bone or long-term illness, we may too have found ourselves asking them questions which relate to their future possibilities. What happened? How long will recovery take? Get better soon! While these may often feel like instinctive questions to ask in the face of illness, in this essay I examine the role and significance of temporal narratives. To avoid derailing into a philosophical argument on existential theories of temporality (see e.g. Heidegger 1962 or Ricoeur 1980), for the purposes of this essay I understand time as a measurable period of existence (in its loosest sense). As Ricoeur (1980) hypothesised, I too take narrative and time to be reciprocal.

Care trajectories in biomedical discourses frequently work chronologically, by addressing patients’ pasts, to help them understand their present, to then support them in building a successful future. Through reference to two ethnographies covering addiction recovery and dementia, I briefly expose the challenges of illness narratives which are past-oriented and focus on the assumption of time as a tripartite past/present/future sequence. I then hope to offer a useful alternative in the form of ‘illness as many narratives’ (Bolaki 2016: 212).

Mattingly’s concept of ‘therapeutic emplotment’ theorises the relationship between a head-injured patient and occupational therapist in ‘clinical time’ (Mattingly 1994: 811). In Mattingly’s focus on clinical time, the patient is not a passive voice in their storyline but one who actively negotiates and creates the narrative they employ with therapists because ‘if the patient does not view therapy as valuable, it will not be valuable’. Mattingly refers to the storyline as a tool for social action, with one’s ‘series of stories’ aimed at building coherence in their care trajectory (ibid: 814-817). While ‘emplotment’ appears important to explore in clinical time, the analytical primacy of ‘storytelling’ places undue emphasis on talking as a means of constituting relations. As explored in what follows, ‘talking’ is often the most challenging of all. The paradox of narrative time emerges here because the dominating focus on a ‘movement toward endings’ may be impossible to envision for those in which illness becomes a permanent adaptation to their life. Therefore, life may not be ‘stretching toward possibilities’ one can ‘influence’ at all. While Mattingly acknowledges that ‘improvisation and revision are necessary’ in care trajectories (ibid: 811), I believe creating a narrative which prioritises ordering the past and future, with hope placed on said future of possibilities, partially neglects the fluctuating nature of recovery and people’s varying conceptions of the structure of time.

We witness the struggles of agency in past-oriented care trajectories in Garcia’s (2008) essay on chronicity, which focuses on Alma, a heroin addict living in Española Valley, New Mexico, and her attendance at the New Mexican clinic rehabilitation program.

Alma’s account of being ‘pushed’ into remembering that she is at perpetual risk of relapsing into ‘past’ addictive behaviour provides a powerful critique of the model of chronicity, an approach that began, in part, as a well-meaning attempt to dispel the moral implications of being a drug addict (Garcia 2008: 737).

Alma’s account exemplifies the complexity of narrative time highlighted in Mattingly’s theories, since ordering people’s ‘series of stories’ (Mattingly 1994: 817) results in seldom more than a ‘well-meaning attempt’ of care (Garcia 2008: 737). The rehabilitation programme’s chronologically oriented narrative focuses on addicts’ pasts and their sequence of personal stories which led them to addiction, to try and prevent their relapse. Popular ‘talking therapy’ techniques at the clinic worked through getting attendees to gain peace with their past traumas. This proved complicated for Alma and her fellow clinic attendees, many of whom were conflicted by traumatic childhoods and tried to erase said memories. Alma’s violent domestic past meant ‘The clinic didn’t work because its focus on the past made life unbearable’ (ibid). The force in which Alma had to resurface past stories continually plagued her present and, combined with her insomnia, life became so treacherous she quit the rehabilitation program despite knowing that noncompliance could result in prosecution. She struggled to stay clean because ‘it’s not that I wasn’t ready … it’s that there’s nothing to be ready for.’ (ibid: 733), implying an inability to forecast a future of hope. Alma shows, therefore, that it is not ‘possibilities (both hopeful and fearful)’ (Mattingly 1994: 817) that motivate one’s care trajectory, as Alma’s fearful future hindered her ability to remain clean. Consequently, for those suffering from addiction, emphasising narratives of the past in care appears ethically ambiguous. Alma ultimately fatally overdosed and her memorial provided greater ambiguity over her past-oriented care trajectory. At her descanso, her father placed a wooden cross with ‘no te olvides [never forget]’, whereas her husband placed a syringe cross, ‘expressing her need to forget’ (Garcia 2008: 741)ⁱ In the face of Alma’s struggle to see her ‘life in time’ (Mattingly 1994: 817), the clinical practice of using temporal narratives, with an emphasis on ‘the past’, appears to flounder as an appropriate therapeutic framework. The story-like nature of emplotment did not emerge here as an effective healing method; on the contrary, the necessity to relive traumatic pasts to ‘comply’ with the rehabilitation programme seemed to neglect her care entirely.

Alma’s fatal overdose unfortunately demonstrates the adverse effects of Mattingly’s theory that care is only valuable with and relies upon emplotment. The chronological nature of therapy management in biomedical discourses creates unintended consequences for those who desperately want to forget their past, like Alma, but also for those who cannot always remember their past, such as Charlene, who is living with dementia. Taylor (2008), the author and Charlene’s daughter, rejects narratives of the past to feel that she is caring responsibly for her mother. Care would theoretically then be non-valuable for Charlene because dementia warps her ability for social engagement. Taylor argues, however, that focussing on Charlene’s inability to engage and reciprocate in her care instead reflects far greater on the ‘others’ (such as Charlene’s close friends) in her care narrative as it instead concerns whether ‘we grant her recognition?’ (Taylor 2008: 315). Despite Taylor demonstrating that name recognition is a ‘narrow sense of remembering’, it highlights how socially valued exchanges are dependent on recognition memory and lacking this ‘correct’ form of social exchange means you are not recognised ‘as fully social persons and members of a community’ (ibid). As this ‘correct’ form of receiving care emerges, it becomes ‘wrong for a person to forget’ (ibid: 318), since recognition memory (involving dialogue and exchange) becomes a metonym for caring for others. In past-oriented care trajectories, Charlene and Alma’s struggle to contend with the past causes neglect of their care. Recognition, memory, and care subsequently develop a complicated relationship, since here, recognition constitutes memory, and remembering implies caring for others. Chronological modes of recognising personhood are thus limited, and an abandonment of past narratives is paramount in caring for those with dementia. We must adapt our understanding of recognition, reciprocity, and memory in caring for people with dementia, because a focus on the past focuses on the ‘others’ at the expense of the person requiring care.

Online methods of narrating illness are increasingly becoming popular forms of self-help, such as through social media or blogging. I welcome this alternative to chronological structures of illness and care trajectories, meaning instead of people having to order their ‘series of stories’ (Mattingly 1994: 817), they can promote their ‘illness as many narratives’ (Bolaki 2016: 212). Bolaki explores how Salvatore Iaconesi hacked into the medical data on his cancerous brain tumour in 2012 to gain agency in his illness. This was to open-source a cure by uploading the data to his website, La Cura, resulting in over 500,000 people interacting to create ‘co-authored narratives’ for his care (ibid). Digital forms of expression and the fast-paced communication methods they entail promote agency by removing the ‘patience’ from being a ‘patient’, with Iaconesi explaining in his TedTalk this meant he no longer had to be ‘the one who waits’ on medical officials in his care trajectory (2015: 2:00). Open sourcing his medical information invited a host of global collaborators from artists to oncologists, enabling a trajectory for concurrent emotional, spiritual, and medical cures (ibid: 5:00). Iaconesi recalled the comfort of one collaborator commoditising a 3D printed version of his brain tumour, ‘Now you can have my cancer too! Which is a nice thing, if you think about it, we can share our cancer’ (ibid: 5:36). Sharing his illness in a micro-blog style on his website creates ‘no considerable temporal distance’ (Bolaki 2016: 212) in his narrative, thus subverting the emphasis on chronological care trajectories. As Heidegger theorises, ‘now’ articulates a ‘making-present’, and the phenomenological interpretation of this is ‘what we call “time”’ (Heidegger 1962: 469, 460; Ricoeur 1980: 72). Perhaps Iaconesi’s present-oriented focus on the ‘now’ through concurrent cures and care trajectories can be considered as a more ‘caring’ narrative time for those experiencing illness. Some view this transparency of illness as a ‘gruesome exhibitionism’ (Bolaki 2016: 220), but I believe Bolaki and Iaconesi demonstrate how moving from narratives of the past to digital narratives of the present reinstate patients’ agency by enabling collective healing and the sharing of suffering.

People experiencing illnesses are frequently stuck in a nexus of time, having to calculate their next appointments, medications, or even lifespan (Morris 2008). Past-oriented care trajectories thus appear so commonly because notions of recovery and healing entrench discourses of harmful pasts and hopeful futures. However, we must pry from the naturalisation of temporal discourses in care trajectories because, for many people, time is simply out of their control. Rather than prioritising narratives of the past, instead, I hope to have shown that focusing on the opportunities that lie in present-oriented narratives can reinvigorate the ‘care’ in care trajectories.

‘Get better soon!’ might not, after all, be the best way to respond to illness.

Endnotes

i. Alma’s passing was unexpected, and the conclusion was that Alma accidentally overdosed on prescription painkillers and heroin. Alma confided in Garcia that heroin was the only way she knew how to restfully sleep as a lifelong insomniac (2008: 739). A descanso is a cross placed in a public area near someone’s resting place, normally depicting an unexpected or violent death.

Marni Owen is an MPhil student in Health, Medicine and Society at the University of Cambridge, and a member of Darwin College. Before this, she graduated from the LSE with an undergraduate degree in Social Anthropology and worked in NHS management. Marni is currently pursuing her dissertation on technologies of care and caring relations among care home workers, and her research interests lie in caregiving, the ‘digital’, temporality, and especially anything concerning all three! 

References

BOLAKI, S. 2016. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University Press.

GARCIA, A. 2008. THE ELEGIAC ADDICT: History, Chronicity, and the Melancholic Subject. Cultural Anthropology 23:4, 718-746.

HEIDEGGER, M. 1962. Being and time (trans. J. Macquarrie & E. Robinson). Oxford: Blackwell Publishers Ltd.

IACONESI, S. 2015. ‘Salvatore Iaconesi: What happened when I open-sourced my brain cancer’ (available online: https://www.ted.com/talks/salvatore_iaconesi_what_happened_when_i_open_sourced_my_brain_cancer, accessed 12 January 2024).

IACONESI, S. & PERSICO, O. 2008. LA CURA (available online: https://la-cura.it/, accessed 12 January 2024).

MATTINGLY, C. 1994. The concept of therapeutic ‘emplotment’. Social Science & Medicine 38:6, 811-822.

MORRIS, D. 2008. Diabetes, Chronic Illness and the Bodily Roots of Ecstatic Temporality. Human Studies 31:4, 399-421.

RICOEUR, P. 1980. Narrative Time. Cultural Inquiry 7:1, 169-190.

TAYLOR, J. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22:4, 313-335.

In writing about the anthropology of health and illness, there is a danger of assuming, perhaps more so than in other aspects of the discipline, that we are writing about something universal: that we all experience or understand something about human frailty or flourishing; that is, beyond the specificities of a particular context, we understand something fundamental about the human condition. The anthropology of care is a great example of this – what kinds of assumptions do we hold about the nature of care? That it is freely given? That it comes from a ‘caring’ intention? Or is it informed by positive emotional states such as compassion, altruism, and so on? Perhaps that some people are naturally more caring than others, women for example, or at the very least, mothers? 

One of the most striking things about care is that, when you start to look for it– it’s everywhere. Carers UK, a national support charity, estimates that there could be as many as 10.6 million unpaid carers across the UK (Carers UK 2022a), with one in seven people in the UK workplace juggling work and care (Carers UK 2019). And care is integral to human experience: we all benefit from it, at one time or another, and many of us give it. Arthur Kleinman, for example, described his experience of caring for his wife, Joan, as an ‘odyssey of becoming more human’ (2009). As he writes, care is a “defining moral practice . . . of empathic imagination, responsibility, witnessing and solidarity with those in great need” that makes us “more present and thereby fully human” (2009: 293). 

I’m with Kleinman up to a point. If caring makes us more human, I think it is because care reveals our vulnerability and our dependence on each other. Care erodes any fantasies we might have of control or autonomy. But, while care might sometimes be understood as a ‘moral experience’ (Kleinman 2012), characterised by a ‘selfless attitude’ (Margalit 2002), or might reflect ‘devotion to the other’ (Kleinman and Van der Geest 2009), it also often involves a host of unpretty emotions. Care is often coloured by loneliness, resentment, and impatience, to name just a few. For example, Carers UK found that over a quarter of carers (29%) feel lonely often or always (Carers UK 2022b). And care work is hard. Even people who care in the best of circumstances often find it challenging. Not always, but often. In many cases, to care well involves attentiveness to another, exhaustion, and emotional ambivalence. 

It is this ambivalence in the ‘backstage’ of care work that my friend, Catherine Trundle, and I wanted to capture in our account of care as ‘unsettled’ (Cook and Trundle 2020). In our own research, and in dialogue with anthropologists working on care in diverse contexts, a picture emerged of care as a morally ambiguous and relationally unstable set of practices. Care is often unsettled by the transforming dynamics of relationships across time and often entails a multiplicity of competing affects and aspirations, such as hope and failure, love and resentment, pragmatism and utopianism, and connection and disconnection. We wanted to know whether anthropology could allow the compromised, shifting, and ambiguous dimensions of care practices to take centre stage. In our effort to address this, we argued that care doesn’t have to be theorised as either morally suspect or morally virtuous, but that we might account for care relationships transforming over time in ways that are often unpredictable and complicated. In my research with Mindfulness-based Cognitive Therapists in the UK (Cook 2020; 2023), for example, I found that effective care necessitated the experience and recognition of uncomfortable affective experience on the part of therapists. In both their professional and personal lives, therapists’ care required an on-going commitment to ‘being with’ forms of uncomfortable self-experience. To care for others, therapists learned to develop a caring relationship with their own experiences of stress and anxiety, and to encourage therapy participants to do the same. 

Recognising the affective complexity of care is important, I think, because ‘good’ care is not necessarily characterised by an uncomplicated ‘core sincerity’ (see also Aulino 2016). An anthropology of care might account for messy grown-up emotions like shame, guilt, or resentment, alongside more virtuous sentiments like selflessness and compassion in care relationships. Catherine and I argued that both the dark and the light might be integral to how carers navigate their relationships with others and themselves. Rather than theorising unsettled and unsettling emotions as a failure of either the moral person or of caring practices, we sought to highlight the affective complexity of care as it unfolds over time. As Bo Kyeong Seo argues, care is often an “ambivalent act that can entail risk and trade-offs…Care is a relation of co-activity, constantly being remade by those who participate in it” (2020: 6; see also de la Bellacasa 2017). This challenges the valorisation of caregiving (as ‘natural’, ‘good’, or ‘rewarding’) and highlights the ongoing, intersubjective nature of care relationships. Theorising care as ‘unsettled’ allows us to spotlight the complex enactments of care that can both nurture and harm, that unsettle, yet also work to ensure the vitality of, relational life. 

Joanna Cook is a Reader in Anthropology at UCL. She is the coeditor of Unsettling Anthropologies of Care (Anthropology and Humanism 2020), and the author of Meditation in Modern Buddhism: Renunciation and change in Thai monastic life (Cambridge University Press, 2010) and Making a Mindful Nation: Mental health and governance in the 21^st century (Princeton University Press 2023). 

References 

Aulino, Felicity 2016 “Rituals of Care for the Elderly in Northern Thailand: Merit, Morality, and the Everyday of Long-Term Care.” American Ethnologist 43(1):91–102. https://doi.org/10.1111/amet.12265 

Carers UK 2019 ‘Juggling work and unpaid care: A growing issue’. Accessed January 11^th 2024. https://www.carersuk.org/media/no2lwyxl/juggling-work-and-unpaid-care-report-final-web.pdf 

Carers UK 2022a ‘Carers Week 2022 Report: Making care visible, valued and supported’. Accessed January 11^th 2024. https://www.carersweek.org/media/qf0p5u4t/carers-week-2022-make-caring-visible-valued-and-supported-report_final.pdf 

Carers UK 2022b ‘State of caring 2022: A snapshot of unpaid care in the UK’. Accessed January 11^th 2024. https://www.carersuk.org/media/p4kblx5n/cukstateofcaring2022report.pdf 

Cook, Joanna 2020 “Unsettling care: Intersubjective embodiment in MBCT”. Anthropology and Humanism 45 (2): 184-193. 

Cook, Joanna 2023 Making a Mindful Nation: Mental Health and Governance in the Twenty-First Century. Princeton: Princeton University Press. 

Cook, Joanna & Catherine Trundle 2020 “Unsettled care: Temporality, subjectivity, and the uneasy ethics of care”. Anthropology and Humanism 45 (2): 178-183. 

de la Bellacasa, María Puig 2017 Matters of Care: Speculative Ethics in More than Human Worlds. Minneapolis: University of Minnesota Press. 

Kleinman, Arthur 2009 “Caregiving: The odyssey of becoming more human”. The Lancet 373 (9660): 292-293.

Kleinman, Arthur 2012 “Caregiving as Moral Experience.” Lancet 380 (9853): 1550–1551. https://doi.org/10.1016/S0140-6736(12)61870-4 

Kleinman, Arthur and Sjaak Van der Geest 2009 “‘Care’ in Health Care: Remaking the Moral World of Medicine.” Medische Anthropologie 21 (1): 159–168. 

Margalit, Avishai 2002 The Ethics of Memory. Cambridge, MA: Harvard University Press. 
Seo, Bo Kyeong 2020 Eliciting Care: Health and Power in Northern Thailand. Madison: University of Wisconsin Press.

I have spent the last year conducting qualitative research about patients facing kidney failure. As such, I have spent a lot of time investigating what kidney care is and how it happens.  How do conversations about care happen in clinical spaces between doctor and patient? And how can we improve patient care through these conversations? 

The word ‘care’ and the concepts tied to it have been so closely situated to the worlds I live and work in. Palliative care, hospice care, medical care, emergency care, kidney care, healthcare, models of care: all describe a particular kind of thing that is transmitted, given, and received. I too influence this thing; my work lives within it. 

But care in this context is not only an action transmuted. It is also a feeling, and a very essential one at that. This kind of care, the feeling of care, feeling cared for, is also very closely situated to these worlds. Over time, I have come to see that demonstrating care is often synonymous with providing care. 

The discussions I have with patients and their family members, doctors, and caregivers have shaped my understanding of the ambiguous realm commonly referred to by healthcare professionals as ‘care,’ often used synonymously with ‘treatment’. This essay will play with the term as both verb and noun, describe and reflect on the interventionist work I do around kidney care, and interrogate the concept as an example of how my background as an ethnographer has led me to a richer understanding of this work.

Upon my graduation from the University of Cambridge, I accepted a job offer in Seattle as a research coordinator in the Division of Nephrology at the University of Washington Department of Medicine. On a daily basis, I interact with patients and their family members, nephrologists, health administrators, staff and other scientists. I have been leading a new study about how medical decisions are made between patients and their nephrologists. We are pilot testing a new communication tool, and investigating how this tool may support patients and providers in having those tricky, intimate, and often awkward conversations about kidney failure —a fatal condition but one for which patients can choose among several extraordinary therapeutic measures: Patients can receive dialysis, a form of artificial life support, that might prolong their lives for additional months to years but requires that they spend many hours each week attached to a machine. There is also kidney transplantation, though it can be extremely difficult for patients to obtain and requires a lifetime of anti-rejection medications if patients are successful in obtaining one. Finally, there is conservative kidney management, which is a palliative approach to care in which patients do not receive dialysis but instead use medications, lifestyle and social supports to manage the symptoms of kidney failure, accepting that they will eventually succumb to their illness. 

Decisions about which kind of treatment is right for a person involve thinking through difficult trade-offs between gains and burdens of each. Indeed, these conversations are fused with medical, ethical, and social issues, posing questions to provider and patient about quality of life, longevity, wishes, values and lived realities. 

The management of chronic health issues like kidney failure is very complex, and conversations about them in an outpatient clinic setting are too. Previous qualitative studies emphasise a need to strike a balance between patient and clinician expertise; although health professionals have more formal understanding of clinical implications, bringing a patient into the fold of decision-making by understanding their lived experiences with illness and their individual needs and wishes for treatment are important and essential to determining what is the right treatment for a patient. 

However, providers are not usually accustomed to eliciting their patients’ story or having intimate conversations about personal values. For this study, I survey enrolled patients about their healthcare values before their next clinic visit with their nephrologist. Then, I use their responses to generate a customised one-page communication tool that I then give to their provider to use on the day of the appointment. On the page are tips on having the conversation, words they might consider trying, and other pointers that might be helpful in discussing patients’ values and incorporating this information into medical decision-making about their kidney disease. In very simple terms, we wonder if this communication tool might improve the care of patients with kidney disease by fostering more goal-concordant care (Allen, Wainwright & Hutchison 2011).

Part of my work also involves interviewing patients after their appointments. ‘Did you talk at all about your values in your care?’ I asked one patient. She replied, ‘We discuss a lot of things, but I can’t say values.’ While it is our hope that conversations about treatment involve discussing what is most important to a person, often they do not. Instead, they are usually discussions about those things that make up care-as-noun. Care-as-noun involves ‘things’ – things like medication, immunizations, biopsies, ultrasounds, blood and urine tests, assessments, appointments, and treatment options. These elements make up the procedural and material aspects of care. Care-as-noun means the practical and explicit ways in which people become patients, and are treated as such. 

As I continued to conduct interviews, asking about care-as-noun afforded me the opportunity to explore other understandings of care. One patient described his ‘professional friendship’ with his nephrologist and how she ‘cares’ about him. This is care-as-verb. He feels that his doctor truly cares about him. She looks him in the eye, asks about his family, and in some ways, feels like a friend. Here, care takes on a different quality. Her care can be described as a sentiment, a ‘subjective and internal state of mind and feeling of a discrete individual’(Taylor 2008:318). That genuine sense of concern, that interest, that lack of indifference characterises what it means to ‘care’, which is not only a feeling, but also a characteristic of a relationship that imbues trust and respect within the delivery of care itself. The patient continued: “And she’s a good person, as well as being a good doctor, she’s a good person. And that to me is actually more important than maybe somebody that’s more technically proficient. Not that she’s not. I’m just saying, if you have two people and one of them is technically proficient and as cold as a fish, which one do you want to be with? Which one do you want to have handling your care?” 

Care and the way it is done, distributed, and managed whilst also shaping life and the end of life has been written about extensively. Sharon Kaufman’s work …And A Time to Die: How American Hospitals Shape The End of Life stands out to me in this regard, tracing the works of medicine, dying, prognosis, and decision-making. She writes, ‘It is an exceptional doctor who talks about death straight on, before visible signs of dying are even evident, even when patients or family members start to ask questions about it’ (2005:47). This is not to say that the conversation tool is designed to bring nephrologists closer to a conversation about death or dying or even kidney failure per se; rather, we wonder if when given the opportunity and some support, when, how and why a provider might step into a conversation around their patient’s values as it relates to their treatment options. On a surface level, I am giving a doctor a piece of paper and asking questions about it. But fundamentally, I am exploring the anxieties, habits, attitudes, and beliefs that are entrenched in the care-worlds of nephrologists and their patients. 

I have also spent time this year interviewing patients for another study about understanding the barriers and facilitators of the kidney transplant evaluation process. Receiving a kidney transplant involves a formal and rigorous evaluation process, which can be burdensome and complex for those who wish to proceed with this kind of treatment (Butler et al. 2021:215).

In one interview, a patient shared how she found out that she was ineligible for a kidney transplant. When she shared how devastated she was with her nephrologist, he asked if she would be interested in getting a second opinion. In the interview, she said, “That made me feel good. I felt like he really cared. He could tell it was depressing for me. He said, ‘We’re going to see what we can do’. And it just felt good to know somebody cared enough to say, ‘We’re going to see what we can do, let’s get this second opinion’…That was showing me that he did care, to ask me about a second opinion. Because I didn’t even think about it, I didn’t even think about getting a second opinion until he mentioned it. So I was happy when he mentioned it, it seemed like he did care, he was somebody that was trying to help. And I did, I started feeling better, not so depressed. You know, as time went by.”‬‬‬‬‬‬

Another patient described to me the ‘really good feeling’ that she had with her `nephrologist. “You can see that he’s listening. He’s not thinking about what they’re going to have for dinner or something. He’s kind of with the program when he’s talking to you. I’ve seen other people that aren’t, you can tell that they just really don’t care. They’re just there to do the job and then go home. But there’s something else about Dr [Redacted]. He’s very different, very, very kind.” That ‘something else’, that difference, that kindness, is something about care that I have come to understand as thicker than caring as a noun or a verb. The ‘thicker’ nature of care is underscored by this patient, who experienced her doctor’s kindness as something beyond the conventional definitions of care-as-noun or care-as-verb. It is both of those things and more. Thick care is an elusive quality that encompasses both the practicalities of medical treatment and the depth of human connection, weaving a tapestry of care that goes beyond the sum of its parts. It is where care’s tangible and intangible elements coalesce to form a holistic and meaningful experience. Meaningful care, thick care, emerges from within the intricate web of relationships and emotions that characterise these experiences. 

I did not anticipate how studies of care like these call forward other definitions of care; indeed, how care-as-verb might share its essence with care-as-noun to create something thicker than both. What has emerged for me this year truly lies underneath the flowchart or systems map of how care is done, where it goes, and how it moves. I am always striving to witness something that isn’t quite here nor there; trying to capture something evasive, find it, follow it, and understand how it transforms from one thing into another, and why. Recognizing and emphasising this mysterious thickness of care opens avenues for a more comprehensive understanding of care in both its practical and emotional dimensions, especially ethnographically.

In reviewing medical records, dropping into clinical spaces, and interviewing participants, I have been witnessing the reflections of those who do and receive and feel this care. Experiencing and living in the care-worlds of Seattle medical systems in work like this has shown me how important it is to care about the research you do and the subjects of that research, especially when investigating care itself. I find within my line of research a striking sense of care as feeling, attitude, value, and virtue. Despite its clinical and medicalized context, my work has been revealing to me a detailed and intimate understanding of the social context in which kidney care is demonstrated and provided, and the feeling-worlds such care elicits. An attention to care in this way may further elicit distinct theoretical perspectives that are rooted in the nature of care itself, and also in the way we study it.

In the words of Carolyn Smith-Morris, the research I do solicits providers and patients to think about the ‘philosophical questions about defining the good, and about how to create structures in which the good can be pursued’ (2018: 430). I suppose this is why I have come to really care about this work, especially as I increasingly understand myself as part of this web of relationships and emotions. Because of the thick feeling underneath the care, the care I feel, where my values about what matters and why live and breathe.

I never imagined I would be working in hospitals, let alone in nephrology. This article is my first real attempt to write coherently about what I do, as I have just myself started to truly understand what that is. People often look surprised when they learn I earn a living by spending time with people and learning about their experiences. Yes, anthropologists do get employed! Reverting to buzzwords like ‘qualitative research’ or ‘storytelling’ is a tempting shortcut when explaining my work but doing so gives only fractured glimpses into the way these days add up into years that change me from the inside out. 

Witnessing the resilience of patients facing the complexities of kidney failure in this way is both natural and unnatural for me. I still cry when they cry. I pause interviews, hand over tissues, and listen carefully as people describe some of their most essential human experiences. I do not always ask every question on my interview guide; meeting the human in front of me comes first. I think about these people all the time. Balancing objectivity with empathy is a delicate, difficult dance – the trial-by-fire for any thoughtful anthropologist.  

This work has made me think about the concept of ‘readiness’. How does a provider gauge if a patient is ready for a conversation about treatment, values, decisions…or the future? Murky concepts like readiness, intuition, embodiment, instinct, and agency float to the top of my attention as I listen to providers and patients discuss their experiences with each other. One patient withdrew from the study after a difficult conversation with his provider about his treatment options. Even though he had consented to the conversation, this patient realised in the moment that he was not ready to discuss these topics with his nephrologist. He could not really articulate to me why he was not ready – just that he wasn’t. I understood the feeling.

I’ve been so extraordinarily lucky to be part of a research team made up entirely of brilliant women, each of whom are patient, understanding, and supportive of me as I come to know the richness of human connection and the complexities of care in this setting. The profound interplay between the tangible and intangible dimensions of care never cease to make my heart ache, a classic mark of caring deeply. I am looking forward to the next few years during which I will continue to step into this line of research as an ethnographer and lead a new multi-year ethnographic study on patients, caregiver and provider experiences with conservative kidney management as it is delivered in clinics, hospitals and patients’ homes.

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The interviews quoted in this article were conducted as part of studies that have undergone Institutional Review Board (IRB) review at the University of Washington and are funded by the Doris Duke Foundation (PI, Wong) and the National Institutes of Health (PI, Butler).

Olivia Gaughran is a writer, anthropologist, and youth soccer coach. As a Mexican Irish immigrant to the United States, she endeavours to cultivate a global, interdisciplinary perspective throughout her personal and professional life. She graduated with a Master of Philosophy in Social Anthropology from the University of Cambridge in 2022 and currently works as a medical anthropologist in Seattle. 

References

Allen, D., M. Wainwright & T. Hutchinson. 2011. ‘Non-compliance’ as illness management: Hemodialysis patients’ descriptions of adversarial patient–clinician interactions. Social Science & Medicine (1982) 73(1), 129–134. 

Butler, C. R., Wightman, A., C.A. Richards, et. al. 2021. Thematic Analysis of the Health Records of a National Sample of US Veterans With Advanced Kidney Disease Evaluated for Transplant. JAMA Internal Medicine 181(2), 212–219. 

Kaufman, S. R. 2005. …and a time to die: How American Hospitals Shape the End of Life. Chicago: Scribner. 

Smith-Morris, C. 2018. Care as Virtue, Care as Critical Frame: A Discussion of Four Recent Ethnographies. Medical Anthropology 37(5), 426–432. Taylor, J. S. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly22(4), 313–335.