All posts by CUSAS Administrator

Oscar Sharples, ‘Care, Criminalisation, and Sex Worker Agency’

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.

Bojan Cvetanović. Retrieved from https://commons.wikimedia.org.

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.

Charlotte Cooper. Retrieved from https://commons.wikimedia.org/wiki/File:Unionize_Sex_Workers.jpg

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.

Samantha Hartley, ‘Risk and care in sex education ideologies of early 20th century America’

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 20th 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 20th 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 20th 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. 

A group of people in a room

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Free Social Hygiene Exhibit, 1924. Photograph retrieved from the Library of Congress, retrieved from: https://www.loc.gov/item/2016849009/

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 20th 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.

Comstock, A. 1909. The Work of the New York Society for the Prevention of Vice, and its Bearings on the Morals of the Young. The Pedagogical Seminary 16, 403–420.

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

Cooper, M. 2006. Pre-empting Emergence: The Biological Turn in the War on Terror. Theory, culture & society 23, 113–135.

De Goede, M. 2008. Beyond Risk: Premediation and the Post-9/11 Security Imagination. Security Dialogue 39, 155–176.

Diamond, T. 1995. Making Gray Gold: Narratives of Nursing Home Care. University of Chicago Press.

Diprose, R. 2008. Biopolitical technologies of prevention. Health Sociology Review 17, 141–150.

Drotbohm, H. 2022. Care Beyond Repair. In Oxford Research Encyclopedia of Anthropology (available on-line: https://oxfordre.com/anthropology/display/10.1093/acrefore/9780190854584.001.0001/acrefore-9780190854584-e-411, accessed 15 December 2023).

Elward, F. 2002. The return of Descartes’s malicious demon: an outline of a philosophy of precaution. In Embracing Risk: The Changing Culture of Insurance and Responsibility (eds) J. Simon & T. Baker, Tom. Chicago, IL: University of Chicago Press.

Ericson, R. V. 2007. Crime in an Insecure World. (1st edition). Cambridge: Polity.

Foucault, M., A. I. Davidson & G. Burchell 2010. The Birth of Biopolitics: Lectures at the Collège de France, 1978-1979. Basingstoke: Palgrave Macmillan.

Giddens, A. 1999. Risk and Responsibility. Modern law review 62, 1–10.

Hall, G. S. 1904. Adolescence: Its psychology and its relations to physiology, anthropology, sociology, sex, crime, religion, and education, vol. I. New York: D. Appleton & Company.

Jensen, R. E. 2010. Dirty Words: The Rhetoric of Public Sex Education, 1870-1924. (1st edition). Champaign: University of Illinois Press.

Moran, J. 2000. Teaching Sex – The Shaping of Adolescence in the 20th Century: The Shaping of Adolescence in the Twentieth Century. (1st edition). Cambridge, Mass.: Harvard University Press.

Rabinow, P. & N. Rose 2006. Biopower Today. BioSocieties 1, 195–217.

Rivas, L. M. 2003. Invisible Labors: Caring for the Independant Person. In Global Woman: Nannies, Maids, and Sex Workers in the New Economy (eds) B. Ehrenreich & A. R. Hochschild. Granta Books.

Sex education review announced after MPs raise concerns 2023. BBC News, 8 March, UK Politics (available on-line: https://www.bbc.com/news/uk-politics-64892868, accessed 16 December 2023).

Tait, G. 1993. Sex education: some political ambiguities. In Child and citizen: genealogies of schooling and subjectivity (eds) Denise Meredyth & D. Tyler. Queensland: Griffith University.

Thelen, T. 2015. Care as social organization: Creating, maintaining and dissolving significant relations. Anthropological Theory 15, 497–515.

Tone, A. 2001. Contraceptive consumers: gender and the political economy of birth control in the 1930s. In American Sexual Histories (ed) E. Reis, 251–268. Malden, Mass.: Wiley–Blackwell.

Flora Cooknell, ‘‘Just a driver’: caring contradictions at a community transport charity in England.’

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.

By Oliver Beelaerts van Blokland (@o___bvb).

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.

By Oliver Beelaerts van Blokland (@o___bvb).

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] 

By Oliver Beelaerts van Blokland (@o___bvb).

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

Marni Owen, ‘What is the effect of past-oriented care trajectories?’

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.

Salvatore Iaconesi & La Cura @ TEDGlobal 2013” by xdxd_vs_xdxd is licensed under CC BY-SA 2.0.

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.

Joanna Cook, ‘Care: ubiquitous, complicated, and anthropologically fascinating.’

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. 

‘Unsettling Anthropologies of Care’ (see Cook & Trundle 2020).

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 21st 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 11th 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 11th 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 11th 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.

Olivia Gaughran, ‘‘I felt like he really cared’: Care as Noun, Verb, and Value for Those Living With Advanced Kidney Disease in Seattle’

A city skyline with a mountain in the background

Description automatically generated
By Zhifei Zhou on Unsplash.

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).

A room with green chairs and a tv

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By Greg Rosenke on Unsplash.

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. 

Credit to author.

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.

__

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.

Paula Saravia, ‘Care struggles: the role of Indigenous health activists in the fight against HIV in Chile.’

Health Activism: from citizenship to radical care

“An indigenous person in Chile is born with stigma and discrimination – if we add Aids, there is a double discrimination”

Willy Morales, president of RENPO

Lampa, August 2016

In October 2015, I attended the first “Futa Trawun Che, kutran VIH/SIDA” (Large meeting of indigenous peoples who are ill of HIV/Aids) held at the Mapuche indigenous health center “Meli Lawen Lawentuchefe” in Lampa, Chile. The meeting was organized by Red Nacional de Pueblos Originarios en Respuesta al VIH/Sida (RENPO) – National Network of Original Peoples in Response to HIV/Aids in English. Following the indigenous protocol, the meeting opened with a ceremony that included greetings and acknowledgments to the spiritual leaders, past and present, and setting the intention to bring well-being to those present. Representatives from Lampa municipality, the Chilean Ministry of Health, the Joint United Nations Program on HIV/AIDS (UNAIDS), and the Pan-American Health Organization (PAHO) also participated in this meeting and introduced themselves. I was surprised to see them actively listening to the words of Willy Morales, the president of RENPO, who narrated his struggles as an indigenous diagnosed HIV patient.

After completing my doctorate, I returned to my home country and began my postdoctoral position. At the time, I was focusing on patients’ organizations in Bolivia (Saravia 2019, 2015) and had just started exploratory research about the role of patients’ organizations in generating new legislation in Chile. In this precarious context, Foucault’s theoretical framework of biopolitics and the concept of biological citizenship, as proposed by A. Petryna (2013), appealed to me. I thought these perspectives would help me to understand the sociopolitical dynamics and the subjectivities that emerged through the work of indigenous and non-indigenous patient activists and advocates who navigate the precarious spaces of neoliberalism. However, after listening to the indigenous leaders presenting at the meeting and their work in pushing for changes at the national level that could help access culturally informed treatment and more accessible testing for HIV, I began to question whether the political engagements were just about reclaiming rights and what was the content of the relationships being built within RENPO. Since then, I have become an advocate for this organization and have collaborated with them throughout the years. 

In this short essay, I examine the work of RENPO, an indigenous organization of patients and advocates, as an example of collective care that disrupts current notions and structures of political engagement in health education and activism. Historically, coloniality has placed indigenous movements at the margins of health policymaking. However, RENPO is shifting that reality through local and community-based actions and influencing the discourse on HIV prevention and control in Chile.  

My friend and colleague Jorge Tibor Gutierrez, whom I met during my undergraduate training in anthropology, had shared with me some of his experiences working along an organization of indigenous peoples from diverse communities and peoples all along Chile, including the Aymara, Rapa Nui, Mapuche, and Huilliche. RENPO had been organizing several advocacy campaigns, including one led by the International Labor Organization (ILO) in 2010 related to the education of truck drivers, who are particularly vulnerable to HIV infection. RENPO assisted the ILO with HIV information materials written in indigenous languages and developing “The Road to Respect” education manual.

RENPO was formally constituted as a non-profit “corporacion” (civil association) in 2012, and their name was “Encuentros de Vida” (my translation: “Life Gatherings”). Their mission is guided by the principle of health and healthy life, preventing and curing catastrophic illnesses that affect persons and their environments. With this holistic goal, the association started working closely with the Ministry of Health, organizing campaigns and assisting the intercultural health program and other health interventions beyond infectious diseases. In their way of responding to the HIV pandemic, RENPO has developed several strategies, some of which I was able to observe firsthand as part of our collaboration these past seven years. 

Members of RENPO holding a meeting at the Meli Lawen Lawentuchefe healing center. Picture: Jorge Tibor Gutiérrez.

Health Activism as Radical Care

Besides the formal meetings with health authorities, conferences, and international alliances with other Latin American Indigenous organizations (including a recent meeting with the Latin American coalition of Indigenous Peoples in November of 2023), most of the work of RENPO focuses on nurturing indigenous knowledge and embodied practices at the local level. The healing center in Lampa, attached to a public primary care clinic, is at the core of RENPO’s everyday forms of care. Ruth Antipichun, one of the founding members of RENPO, leads the healing center as a Lawentuchefe (Mapuche herbalist), performs healing rituals, and prepares educational sessions and training for local non-indigenous providers and students. Ruth Antipichun and her team of intercultural facilitators care for the medicinal garden adjacent to RENPO’s community center and concoct the required plant-based treatments. At the Meli Lawen Lawentuchefe Center, Ruth performs what anthropologists have referred to as care as processes of world-making and engagements with the world of medicine that includes more-than-human agents (de la Bellacasa 2017, 2010). Ruth’s care work connects to the rest of RENPO’s entanglements of care for each other, for example, holding listening sessions during meetings where members share experiences and emotional responses to failures or successes in their work. For many members, the organization has helped them reconnect with their indigeneity, as one man told me, “Now, I can dress like a Mapuche man and speak my language proudly; I could not do that before” (Santiago, June 2018). In this sense, through continuous and cohesive social actions, RENPO also disrupts established definitions of patients’ organizations or even what is understood as an indigenous organization. The fact that RENPO and its members identify themselves in response to the HIV pandemic is also evidence of their willingness to produce a change in how public health officials see indigenous peoples in Chile.

Moreover, at the core of it all, using Murphy’s (2015) framing of decolonizing care, there is an explicit indigenous intention and understanding of how to care. In contrast to hegemonic racialized and authoritarian framings in which indigenous health initiatives operate, RENPO actively unsettles such framings of care by connecting relationships of care for indigenous HIV/Aids patients to other claims for community well-being, such as sustainable food systems and environments. One example was the role of RENPO activism in Chiloé during the toxic red tide event of 2016, where its leaders played an important role in the broader social movement against salmon farming industries-driven environmental crises and Chile’s permissive legislation that allows unchecked ecological disasters.

In their 2020 essay, Hobart and Kneese argue that we should think of care as part of social movements and collective strategies that provide hope (possibilities) in precarious contexts. Thinking about the therapeutic landscape built by RENPO in Lampa, as well as the solid alliances and coalitions built throughout Chile and beyond, a concept of radical care provides more substantial ways of understanding RENPO’s political work. 

In this short essay, I have described the work of RENPO as a way to unsettle our understanding of indigenous health activism, seeing collective action as radical care that has been crucial in negotiating alternatives for reclaiming and de-centering biomedical models of care.

Acknowledgements

This work would not be possible without the generosity of RENPO’s leaders and members in sharing their experiences and knowledge with me. I especially thank Willy Morales, Ruth Antipichun, Elba Huinca Meliñir, Doraliza Millalen, and Jorge Tibor Gutierrez.

Paula F. Saravia studied social anthropology at Universidad de Chile (1995-2000), where she specialized in medical anthropology. She worked on poverty reduction programs in Chile and taught at Universidad de Chile as a Lecturer. In 2006, she received an Erasmus Mundus grant from the European Union to study in the interdisciplinary Master’s program “Phoenix Dynamics of Health and Welfare.” Her dissertation research focused on understanding modes of engagement and tuberculosis illness experiences within Aymara communities in Bolivia and Chile. Her current research is oriented toward understanding the mental health impact of environmental precarity among indigenous communities in Northern Patagonia, Chile. She joined the Department of Anthropology at the University of Washington in June of 2021 and is currently an Assistant Teaching Professor in Medical Anthropology and Global Health. 

References

de La Bellacasa, Maria Puig. Matters of care: Speculative ethics in more than human worlds. Vol. 41. University of Minnesota Press, 2017.

de La Bellacasa, Maria Puig. 2011. Matters of care in technoscience: Assembling neglected things. Social studies of science41(1), 85-106.

Hobart, Hi’ilei Julia Kawehipuaakahaopulani and Tamara Kneese. 2020. “Radical Care: Survival Strategies for Uncertain Times.” Social Text 38 (1), p.1-16 

Murphy, Michelle. 2015. “Unsettling Care: Troubling Transnational Itineraries of Care in Feminist Health Practices.” Social Studies of Science 45 (5), p. 717–737.

Saravia, Paula F. “Tuberculosis, involucramientos políticos y espacios biosociales en Bolivia.” estudios atacameños 62 (2019): 297-310.

Saravia, Paula Francisca. Ujuk Usu. Medicine, Tuberculosis and Race among the Aymara of the border between Bolivia and Chile. University of California, San Diego, 2015.

Editors’ Welcome

Dear Reader,

We welcome you to the 3rd edition of the Cambridge University Social Anthropology Society (CUSAS) Magazine, organised by the 2023-24 CUSAS Committee. We have entitled the Lent 2024 edition: ‘Care’. In selecting this focus, we hoped to allow room for a variety of inquiries and contexts of exploration within our Department’s scholarly community.

CUSAS’ vision is of a Department wherein students and staff are exposed to challenging and diverse views which further their anthropological interest and facilitate both academic achievement and social change. The pieces in this edition reflect a variety of perspectives on care and offer new perspectives on how our anthropological contexts stretch and morph the term, thereby challenging our own preconceptions about what lies within the interactions taking place in our world. We wanted to allow space for our members to reflect based on personal experience, research context, and histories and current events. We believed that creating this space for reflection would allow for further rumination within our community.

CUSAS has, throughout the year, forefronted our own thinking about care and how this shapes our anthropological community. We have hosted events such as the “Health and Wellbeing Discussion Group”, where our members have engaged in a ‘reimagining of medical anthropology, in which wellbeing, not merely illbeing, becomes a primary focus of inquiry’. Likewise, we have hosted events where undergraduate and one-year MPhil students could speak with those who have fieldwork experience about addressing one’s mental health in the field. As we continue through this academic year, we are mindful that our mentorship scheme and attention to EDI highlights our role, or our care, in supporting students on their journey within this discipline.

This edition seeks to highlight anthropology’s grappling with care and its capacity for providing a new lens through which we can self-reflect about our role as researchers and human beings alongside our findings within our fieldwork.  Professor Iza Kavedžija’s and alumna Olivia Gaughran’s pieces, included in this edition, provide self-reflection on how we can define care in relation to our work and our environment. Also featured in this edition are comments from Dr Joanna Cook and Dr Paula Saravia, who discuss the complicated nature of how anthropologists make sense of care and the obligations that come with caring relationships in the field.

We would also like to thank our student contributors for undertaking the topic of care in imaginative ways. Their work considers the nuance of care in various contexts around the world and suggests extensions for anthropological analysis to aid our discipline’s conceptualisation of the term. You can read all the pieces here.

We invite you to read this newest edition of the magazine and to challenge your own notions of care and its value to advancing our discipline’s understanding of our work and the world around us. 

Sincerely,

The CUSAS Magazine Co-Editors

Adaiah Hudgins-Lopez, PhD Social Anthropology

Edurne Sosa El Fakih, PhD Social Anthropology

Adaiah Hudgins-Lopez is a writer, dancer, and creative pursuing a PhD in Social Anthropology at the University of Cambridge. She is a 2021 and 2022 Gates Cambridge Scholar and a member of Trinity College. Her writing and creative work centres Afrofuturist musings, narratives of migration, and explorations of community and movement building. 

Edurne Sosa El Fakih is mostly a stubborn and intense writer pursuing a PhD in Social Anthropology at the University of Cambridge. She is a member of Newnham College and Menca de Leoni Scholarship recipient. Her book, Al borde de un viaje, is a creative project that speaks about uprooting, death, and childhood nostalgia.

Iza Kavedžija, ‘Repair as Care: Fragments’

A drawing of a chair

Description automatically generated
Repair (detail), 2024, by Iza Kavedžija. Charcoal and chalk on paper, tissue, thread. 

Bending backbreaking, struggling sight 

Sagging seat brought back to comfort

Held by string and love

Better than before

In a classic definition of care, Tronto and Fisher include ‘everything that we do to maintain, continue and repair our “world” so we can live in it as well as possible. That would include our bodies, ourselves and our environment, all of which we seek to interweave in a complex life-sustaining web’ (Tronto and Fisher 1990: 40). Through such work, worlds are left liveable. On the other hand, disrepair and ruination (Navaro-Yashin 2009) create atmospheres of abandonment and disquiet. In this short essay I would like to consider some of the qualities and affective discharges of the opposite processes: mundane maintenance and humble repair.  

Last summer, writing at my table in the shade, I fidgeted time and again. My old armchair no longer seemed comfortable, so I got up to stretch my legs and make a cup of coffee. When I came back, the chair was upturned like a helpless insect, safe in the hands of my father, who was winding and weaving smooth blue string under the seat, rebuilding its strength. 

If what gets valued in the predominant paradigms of late capitalism is productivity and creativity, it is no wonder that repair holds relatively little appeal. Yet I much prefer the old armchair to any new one that could have been offered to me as a replacement. Traces of the inalienable undergird the seat.

Sitting in the armchair more recently, I was reminded of numerous times when something I liked got broken or damaged – in childhood or just last month (a hairclip, a necklace or the sole of a favourite worn-out boot) – and I was knocking on my father’s study door with the damaged object in tow, knowing he will mend and make things good, one way or another.  These days, I could often do it myself, but I still prefer to ask for help, to be taken care of once again.

Describing the labour of people in a waste sorting facility in Jamshedpur, India, Sanchez (2020) draws attention to the satisfaction they are able to take from their work as they sort waste into still useable objects and useful parts, effecting a transformation of value. Sanchez argues that those activities that entail making something new, some form of creative action – which have long been related to a sense of meaningful work in the literature on craft (Sennett 2008; Marchand 2016) – should best be understood as a part of a broader category of transformative work. This allows him to attend to work satisfaction as a form of transformation of value, and opens up a possibility for understanding the appeal and satisfaction of labour that is less easily presented as creative. Value is a helpful framework for understanding repair as a form of care, and points to the reasons for the relative disregard of the non-transformative labour of maintenance in our social worlds. 

The aesthetics and politics of mending

Neither care nor repair are by default ‘good’ or positive (Graziano and Trogal 2019); both can be unstable and morally ambiguous (Cook and Trundle 2020). But they might also offer a basis for reconfiguring politics and ethics in the Anthropocene (Chatzidakis et al. 2020). How we decide what is worth repairing and maintaining (Puig de la Bellacasa 2017: 44), what can be left to fall into disrepair, and what objects and relationships are best replaced with something different, are all important political and ethical questions. 

At times, by mending things in visible ways (see also Bond et al 2013), objects are given a new lease of life. Good examples include visible stitching, patching and mending, and pottery repair like the Japanese art of kintsugi – fixing broken pottery with gold, not aiming to hide the imperfection. Kintsugi has gained international popularity and recognition in recent years, not least because of what it is taken to signify, in a broader, metaphorical sense, drawing attention to the aesthetics and ethics of repair: ‘breaking and mending can be an important part of the life of an object, adding to its beauty and meaning’ (De Silvey and Ryan 2018). New value is thought to emerge in visible mending, emphasising the creative aspects of repair. 

Not only are there different kinds of repair, ranging from ‘re-making’ or ‘up-cycling’ to the more mundane varieties, repair and maintenance have also been discussed as distinct, particularly with respect to their temporal orientations. ‘Repair is retrospective: it traverses the ground between past and present, seeking to restore order and function in the face of breakdown. Maintenance on the other hand is anticipatory and future oriented. It is concerned with what might go wrong, and what needs to be done so that function is preserved and future disruption is minimised.’ (Carr 2023: 226). I find this temporal distinction interesting and helpful, but at the same time, I find myself most interested in those forms of repair that closely resemble maintenance in their scale and inconspicuousness and intention: to make things as they were; to preserve. 

Humble repair, close to maintenance, is not so transformative, to return to Sanchez’s terms. It is possible, no doubt, to understand the qualities of care and maintenance, in their attempts to keep ‘entropy and chaos at bay’, as a kind of transformation (cf. Sanchez 2020); but I am interested in those cases when they are felt to be restorative, keeping the ‘transformation’ at arm’s length, as it were. Care and repair can be truly creative and transformative, the interventions unusual and outright flamboyant, leading to a sense of satisfaction. But the affective qualities of humble repair processes seem somewhat different. The joy (or relief) of humble repairs is in keeping things as they are, just a little bit longer. 

The value of keeping things going

My fathers’ eyesight has been failing, his retinas repaired several times. As I write this, he just came out of surgery again. His vision has been restored once more. 

For the women in a Mexican village with whom Julia Pauli worked, a key aspiration, particularly for many of the elders, was to keep things as they are a little longer, un poco más, striving to live a tranquil life (Pauli 2023:129, 138). The need to keep things going often feels imperative, urgent, much as care has been described as pressing (Held 2006: 11). Yet the efforts involved in maintaining social worlds are easily overlooked and undervalued. Maintenance ‘reminds us that a state of well-being is not so much accomplished as continually worked at and towards. Put another way, to maintain is not only to keep things as they are but also to keep them going’ (Hall and Smith 2011: 34). Care has long been compared to a form of repair and ‘tinkering’ (Mol, Moser and Pols 2010), requiring constant tweaking and maintenance. Repair, on the other hand, has been described as a ‘regime of practice’ (Graziano and Trogal 2019: 203) with potential for political transformation. It could also be argued that it is a practice which fosters a form of care-ful attunement to the world, based on the understanding that lives and worlds are fragile and in need of our constant attention and maintenance. 

A piece of paper with a hole in it

Description automatically generated
Repair (detail), 2024, by Iza Kavedžija. Charcoal and chalk on paper, tissue, thread. 

Iza Kavedžija is Associate Professor of Medical Anthropology at the University of Cambridge. She specialises in the anthropology of Japan and has written on topics including meaning in later life, wellbeing and creativity. Recent book publications include Meaning in Life: Tales from Aging Japan (University of Pennsylvania Press, 2019); Values of Happiness: Toward an Anthropology of Purpose in Life (University of Chicago Press, 2016); and The Process of Wellbeing: Conviviality, Care, Creativity (Cambridge University Press, 2021).

References

Bond, S., DeSilvey, C. and Ryan, J.R., 2013. Visible mending: Everyday repairs in the Aouth West. Uniformbooks.

Carr, C., 2023. Repair and care: Locating the work of climate crisis. Dialogues in Human Geography13(2), pp.221-239.

Chatzidakis, A., Hakim, J., Litter, J. and Rottenberg, C., 2020. The care manifesto: The politics of interdependence. Verso Books.

Cook, J. and Trundle, C., 2020. Unsettled care: Temporality, subjectivity, and the uneasy ethics of care. Anthropology and Humanism45(2), pp.178-183.

DeSilvey, C., Ryan, J.R. and Bond, S., 2018. Everyday Kintsukuroi: Mending as making. In Geographies of Making, Craft and Creativity (pp. 195-212). Routledge.

Tronto, J. C., & Fisher, B. 1990. Toward a feminist theory of caring. In Abel, E. & Nelson, M. (Eds.), Circles of care (pp. 36–54). Albany, NY: SUNY Press.

Graziano, V. and Trogal, K., 2019. Repair matters. Ephemera: Theory and politics in organization19(2), pp.203-227.

Hall, T., and Smith, R. 2011. Walking, Welfare and the Good City. Anthropology in Action 18, 3, 33-44

Held, V. 2006. The ethics of care: Personal, political, and global. Oxford: Oxford University Press.

Marchand, T.H. ed., 2016. Craftwork as problem solving: Ethnographic studies of design and making. Ashgate Publishing, Ltd.

Mol, A., Moser, I. and Pols, J. eds., 2010. Care in practice: On tinkering in clinics, homes and farms. transcript Verlag.

Navaro‐Yashin, Y., 2009. Affective spaces, melancholic objects: ruination and the production of anthropological knowledge. Journal of the Royal Anthropological Institute15(1), pp.1-18.

Pauli, J., 2023. Before It Ends. In Amrith et al. (eds.), Aspiring in Later Life: Movements across Time, Space, and Generations. 129-144.

de La Bellacasa, M.P., 2017. Matters of care: Speculative ethics in more than human worlds (Vol. 41). U of Minnesota Press.

Sanchez, A., 2020. Transformation and the Satisfaction of Work. Social Analysis64(3), pp.68-94.

Sennett, R., 2008. The Craftsman. Yale University Press.

Xintian Ma, ‘Object Study as a Decolonisation Method in Museum: A Reflection from Cambridge MAA Digital Lab’

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The “World Cultures” gallery of Cambridge University Museum of Archaeology and Anthropology (MAA). 
Credit to the author.

The origin of collections in the museum is deeply colonial. Since the 16th century, ‘exotic’ things were collected by European explorers who placed them in cabinets of curiosity (Amsel-Arieli 2012). Later, museums were created to gather and showcase those objects, creating an ‘expression of the Western conviction in the onward march of the rational’ (MacKenzie 2017). Today, as a result of such a legacy, many objects in museums have been parts of collections through the colonial process. Therefore, to further advance the trajectory of decolonisation, understanding the colonial past of museum collections is an integral part of the effort. Objects situated as the trophies of colonialism, become a means for us to unpack the process in reverse. Methodologically, how can we utilise museum objects as a tool of decolonisation? The recent launch of the digital lab at Cambridge University Museum of Archeology and Anthropology (MAA) offers an insight into such a possibility. In the digital lab, museum objects are carefully catalogued and analysed to reach a wider audience while revealing their colonial history. By reflecting upon the MAA Digital Lab, I try to comment on the possibility of focusing on objects as a method for decolonising museums. I argue that object study helps us to understand the context of how collections have travelled, and in some cases been misidentified within the colonial context. By adding an object’s historical context back into its story, the dichotomy between provenance and collection is broken down, thus enriching our knowledge of both objects themselves and missing details from their colonial history.  

What is MAA Digital Lab? 

See MAA Digital Lab website: https://maadigitallab.org/.

The MAA Digital Lab was launched in late 2022 as an online platform aiming to create public digital engagement and access to its collections. It has a particular focus on the ‘transparency regarding legacies of colonialism, pushing towards greater dialogue, equality and change in our thought and practice, and diversifying the narratives and voices that speak to and about the collections’ (Elliott 2022). By doing so, the Digital Lab offers an extensive object catalogue of museum collections, a constantly updated section of blog posts, research notes, and online exhibitions. Furthermore, university staff, students, and external researchers are all openly invited to contribute to the blog-making. They are invited to start with an object from the museum catalogue and discuss the history of how those objects have connected to their source communities and how they arrived at the MAA. Currently, the blog posts are arranged according to two themes: 1) Object Diasporas that trace ‘the journeys by which artefacts have reached Cambridge, from complex local trajectories of production and use to the power relationships of colonial era collecting’, and 2) Substances of Wellbeing and Intoxication, objects related to drinks and other substances in “the social and cultural contexts in which they were consumed, the journeys they took and the interpretations offered by collectors and curators” (Elliott 2022). In short, the MAA Digital Lab is a comprehensive tool and source of knowledge, with detailed information about museum objects, and a place for constantly updated blog posts to reveal the travels and histories of objects in its collection. 

What makes the MAA Digital Lab distinctive, and how does it help us with decolonisation? First, the Digital Lab offers a rich catalogue of objects collected in museums. In the catalogue, the introduction does not only explain the provenance and visual appearance of each object but also provides a detailed context of how they have been treated before and after becoming a museum collection. For an instance, my current research focuses on the Tibetan Buddhist statues collected in MAA. When I look into an object in its digital archive, the context section provides a detailed description of how an object has travelled, been used, and physically changed across different periods. Taking an example, a Gilt lacquered wooden figure of Guanyin (MAA 1960.400.1-3) gives information about how its donor, John F. William, acquired the statue from the purchase of his grandfather, and how the votive deposit was removed before arriving. The votive offerings of the statue were taken out by Williams and are now separately collected by the MAA. By searching the descriptions from catalogues, we can add a new dimension to an object’s history not only through its physical appearance but also through the story both before and after it was placed in the museum. 

Gilt lacquered wooden figure of Guanyin from the Digital Catalogue (1960.400.1-3).

Moreover, the blog post and research note section also invite researchers to discover stories of colonial history by highlighting the diaspora of objects through their past misinterpretation and attribution. For example, one of the blog entries focuses on the figure of Guanyu, a warrior and a Taoist deity made in a southern Chinese Taoist temple during the early 19th century (Griffin 2022). The statue was presented to the Fitzwilliam Museum by Isaac Bernard, a British Captain serving a company involved in the Opium trade during the 1850s. The blog highlights the past misattribution of the statue from its British donor and the possibility of a renewed providence emerging from the context of the Opium War. Opium was valued as a medicine in China and British traders would exchange it for tea. However, opium became an addictive drug to millions of people in the country and China’s effort to end the opium trade sparked military conflicts with Britain, ending the war with two treaties ceding Hong Kong, giving more privileges to British traders, and forcing China to pay reparations (Griffin 2022). During such a historic period, this statue was brought to Cambridge. It was first considered by the donor as a “Pirate King and his Wife” when it was initially brought into the Fitzwilliam Museum, while another note on the statue misidentified the statue as a “Buddha” when it was transferred to the MAA (Griffin 2022). The blog posts, as the discussion of the Guanyu statue exemplifies, offer a discussion of how museum objects were interpreted in different ways under different ownerships. By looking at the process of interpretation, we can gain an insight into how an object was misinterpreted during the past, thus informing the colonial history each object has embodied. In summary, both the object catalogue and blog post sections from the MAA Digital Lab provide details of objects beyond their appearance by exploring contexts between provenance and museum collection. By looking at those contexts of objects as a research method, we can understand the colonial process of which an object may have been through. 

Blog Post on the figure of Guan Yu (Griffin 2022).

MAA Digital Lab and Decolonisation in Object Research 

Reflecting on the MAA Digital Lab, it offers a dialogue in the ethnographic approach of making an object’s biography. Through anthropological inquiry, an object is considered to have a social life, as it moves through different contexts of exchange, and acquires different identities and values (Appadurai 1986). To map an object’s social life, Kopytoff (1986) argues for the making of an object biography by highlighting the changes in its cultural value. Furthermore, Drazin (2020) also advocates for the use of object biography as an ethnographic method: we choose one object to follow and describe its changes, direction of travel, and finally create a biography that helps us ‘raise the critical perspective and alternative frameworks for understanding culture’ (63). Lastly, applying object biography to the museum, Alberti argues for objects as a relational site of the museum. As Alberti (2005) describes, the value and significance of things are imbued by people, and the life of an object in a museum reflects its contemporary social relationships through attributions of different meanings (561). Therefore, Alberti (2005) suggests that objects gather meanings ‘through associations with people they encountered on their way to the collection, thus linking the history of museums to broader scientific and civic cultures’ (559). 

Linking object biography as an anthropological method to the MAA Digital Lab, we can see how the Digital Lab allows us to engage with objects and their social relations through both digital catalogue and blog-making. On the one hand, the digital catalogue provides detailed descriptions of the source of an object and the context to which it may have been attributed, physically changed, or identified. On the other hand, those detailed descriptions then provide a resource for researchers to trace an object’s biography and learn about the processes of how they were possibly misattributed as a part of colonial history. The use of the Digital Lab thus echoes Drazin’s (2020) suggestion, where object biography enables us to raise such a ‘critical perspective’ in understanding culture by exploring the changes and contexts of an object’s colonial history. Moreover, resonating the Digital Lab with Alberti (2005), objects become a site where their colonial meanings were gathered through past social relations. By studying those relations, the history of the museum in broader topics such as the history of colonialism is discussed. Therefore, I suggest the Digital Lab integrates the decolonisation process by focusing on an object’s social life as a site of research in and of itself. By looking at past misattributions, identities and interpretations of objects, the Digital Lab can fill in the knowledge gap between an object’s origin and its placement in the museum. Those highlight how research into object biography may thus shed new light on colonial history, revealing contexts once made invisible by the forces of colonialism. 

Finally, as the MAA Digital Lab highlights the biographical context of an object, it provides an opportunity to discuss aspects which other museums may have overlooked. In many museums, objects are recorded with a description of their visual analysis and a brief information of their origin (in many museums, object databases only record each collection’s visual and physical aspects and the place of origin, accompanied by a legal note. A close example can be seen is the Fitzwilliam Museum database: https://www.fitzmuseum.cam.ac.uk/objects-and-artworks). However, the context of how objects have travelled and been misidentified in the process of becoming a part of the museum is often easily ignored. The in-between moment from origin to collection, as the MAA Digital Lab has demonstrated, becomes an important space to understand the colonial background of museum objects more broadly. Therefore, I suggest to further advance the decolonisation effort, we should take each object’s social life seriously. By breaking down the black box between provenance and collection, the MAA Digital Lab offers an opportunity for a research method where an object’s colonial history can be rediscovered and readdressed. Lastly, object study becomes a method of decolonisation by breaking down the duality between a museum’s provenance and collection. By paying attention to those liminal moments between origin and accession, the often overlooked details of an object’s colonial history come to life. 

Xintian Ma is from Guizhou province in Southwestern China. He is currently a MPhil student in Social Anthropological Research at the University of Cambridge. He recently graduated from the University of St Andrews with an undergraduate degree in International Relations and Social Anthropology. With research interests in politics, heritage, museums, religion and ethnicity, his MPhil dissertation focuses on the social life of Tibetan Buddhist statues collected in Cambridge University Museum of Archaeology and Anthropology.

Bibliography

Alberti, S. J. M. M. 2005. Objects and the Museum. Isis, 96(4), 559–571. 

Amsel-Arieli, M. 2012. “Cabinets of Curiosity (wunderkammers)”, History Magazine, 13, 40-2. 

Appadurai, A. 1986. “Toward an Anthropology of Thing”, in The Social Life of Things: Commodities in Cultural Perspective. Cambridge: Cambridge University Press. 1-2

Drazin, A. 2020. “The Object Biography”, in Lineages and advancements in material culture studies. Routledge. 61-74.

Elliott, M. 2022. “Introducing MAA’s Digital Lab”, MAA Digital Lab. https://maadigitallab.org/2022/12/06/introducing-maas-digital-lab/ 

Kopytoff, I. 1986. “The Cultural Biography of Things: Commoditization as Process”, in The Social Life of Things: Commodities in Cultural Perspective. Arjun Appadurai, ed. Cambridge: Cambridge University Press. 64-92. 

MAA. 2023. “Welcome to the MAA Digital Lab”, MAA Digital Lab. https://maadigitallab.org/about/ 

MAA. 2023. 1960.400.1-3: “Gilt lacquered wooden figure of Kwan Yin [Guanyin], God(dess) of Mercy”. https://collections.maa.cam.ac.uk/objects/494491 

MacKenzie, J. M. 2017. “Introduction”, in Museums and Empire. Manchester, England: Manchester University Press. 
Griffin, A. 2022. “The Buddha, the War God and the Pirate King”, MAA Digital Lab. https://maadigitallab.org/2022/12/06/the-buddha-the-war-god-and-the-pirate-king/