Combined Book Review: Care and Its Discontents: Two Ethnographic Cases

Aulino, Felicity. 2019. Rituals of Care: Karmic Politics in an Aging Thailand. Cornell University Press.

McKearney, Patrick. 2018a. Receiving the Gift of Cognitive Disability: Recognizing Agency in the Limits of the Rational Subject. Cambridge Anthropology 36(1):40-60. 

__________. 2018b. The Weight of Living: Autonomy, Care, and Responsibility for the Self. Journal of Disability and Religion 22(3):266-282. 

__________. 2021a. What Escapes Persuasion: Why Intellectual Disability Troubles ‘Dependence’ in Liberal Societies. Medical Anthropology: Cross Cultural Studies in Health and Illness 40(2):155-168. 

__________. 2021b. The limits of knowing other minds intellectual disability and the challenge of opacity. Social Analysis 65(1): 1-22.

__________. 2022. Disabling violence: intellectual disability and the limits of ethical engagement. Journal of the Royal Anthropological Institute 28(3):956-974.

The precarity of the human condition makes care a vital fabric of social life and acts of care a driving force of our moral engines. Despite how there is so much care work to be done and how often such acts are received with awe and gratefulness, no care work, arguably, is straightforward or without an issue. Every act of care bears with it various structures and assumptions and cannot be isolated or freed from political platforms, religious/spiritual ideologies, moral frameworks, elusive underlying intentions, and many of our deeply-help assumptions about the subjects (or, at times, objects) of care. The thought-provoking works of two anthropologists, Felicity Aulino and Patrick McKearney, present two different contexts in which care is carried out in rather special ways with distinct motives. Aulino, in her book Rituals of Care: Karmic Politics in an Aging Thailand, looks into the ritualized acts of care in Thailand where care work is pushed to volunteering networks, allowing the state to legitimize privatization while providing caregivers opportunities to accumulate merit in their Buddhistic understandings. McKearney, in his set of published articles that this writing tackles, presents ethnographic material on L’Arche in the UK, which is a state-funded Christian charity “that provides care for adults with intellectual disabilities in the context of a religious community” (2018b: 269). While both the context of their work may have very little similarity, the arguments and ethnographic details that emerge out of their research present various striking elements related to the necessity and ethics of care, understandings of agency in care relationships, and issues beneath care frameworks which will be discussed below. In this writing, I will attempt to analyze both works while identifying ways that the materials may speak to one another and hope to present some novel insights that can be drawn from their work in light of the aforementioned themes and topics.

Why Care?

One of McKearney’s main depictions of L’Arche suggests that caregivers in this institution are trained to “recognize those with cognitive disabilities not as humans who lack autonomous moral agency, but as people who inhabit the world in a different way” (2018a: 41). McKearney contrasts this understanding to the utilitarian philosopher Peter Singer’s contention that people with cognitive disabilities are of limited worth to others because they lack the sort of autonomous moral agency that prevents them from adhering to moral norms, giving care, having political discussions, and so on. Instead, caregivers learn to see people with cognitive disabilities as “surprising, eccentric and charismatic agents who can powerfully affect the ethical lives of others” (ibid.: 41). To achieve this, caregivers live together with people with cognitive disabilities to foster a community of interdependence in which people work to cultivate friendship with one another. In the process, caregivers learn to become more dependent and vulnerable themselves through communal practices such as washing each other’s feet—signifying interdependence rather than independence. Such interdependence then generates inspiring encounters for the caregivers. An example is how Maden, a caregiver, describes Rachel, one of her friends with cognitive disabilities, as always being able to sense her sadness or tiredness, despite how much Maden may try to hide it, and responding by hugging Maden. Another caregiver describes people with cognitive disabilities as being very gifted in the heart while those who are not are gifted in the head but are often poor in the heart. Such heroic and dramatic stories are often told at dinner tables, turning people with disabilities into the protagonists—making them the agents. As McKearney also explains, these stories imply that it is precisely “because those with disabilities are incapable of comprehending social norms and ethical ideals that they can be particularly honest, perceptive or welcoming” (ibid.: 51)—making them excel at the face-to-face aspect of morality. And, as the author further argues, it is also because people with cognitive disabilities can be ‘anethical agents’ that they charismatically depart from both our cognitive and ethical norms—becoming distinctly different agents whom caregivers can be affected by and learn from. The presented picture then counters Singer’s argument and suggests that people with cognitive disabilities can and do contribute to and affect the ethical lives of others in valuable ways—making them very much worthy of care.

In the case of Thailand, as Aulino describes it, we face a more mundane and ritualized form and practice of care. The author, in the book, repeatedly emphasizes the significance of conceptualizing care as ritual and how doing so “allows us to pay attention to what caregivers do rather than just what they say they do” (p.23-24)—bringing us closer to the heart of anthropology “where discursive analysis is less important than ‘being there’” (p.24). The attention to the possibility of perceiving care also as ritual arises due to how her interlocutors, family members, and volunteers who care for the elderly, carry out mundane—yet, at times, toilsome—caregiving tasks without much thought or emphasis on the interiority and sincerity of such acts. This can be understood in a Thai Buddhist framework that puts forward beliefs of reincarnation, karma, and merit. Individuals’ actions generate karma that carries on to their next lives, shaping their life encounters accordingly in the cycle of rebirth and suffering. The ill effects of past actions are cleared out by accruing merit through actions. In the case of Aulino’s interlocutors, suffering that illnesses care-receivers experience and the difficult caregiving situations that caregivers go through might be the result of past misdeeds. People engage in acts of care to gain merit: repetitive practices achieve effects through their correct performance (p.21). To further elaborate, Aulino turns to fifth-century Pali philosophy to argue how intention is karmically and interpersonally conditioned while the path to enlightenment and joy is paved not with positive intention but with restraint and discipline (p.50). Hence, “little emphasis is placed on an agreement between inner orientation and external actions” (p.66). In this sense, ‘what counts’ as care “stems from bodies communicating and performing without a conscious cognitive component” (p.39).  

The contrast between the two settings is rather thought-provoking. On the one hand, in McKearney’s work, there are caregivers whose care work allows them to explore the moral worth and agency of the other. Such understanding also cultivates interpersonal bonds that generate friendships, open up vulnerabilities, and deepen the idea and will to care. The case almost suggests a direct relation between intersubjectivity and the effectiveness of care. To care is to give voice and agency to the other. This is done through mainly exploring the inner worlds of the other and seeking ways to connect and learn. On the other hand, in the Thai case, interiority is of lesser regard and what impels care is an ethical endeavor that shapes one’s existential being and reincarnation cycle. While caregivers in L’Arche put active effort in not turning people with cognitive disabilities into passive objects of care but rather subjects with a different kind of agency, the issue is rather irrelevant in the Thai case. This is not to say Aulino suggests that her interlocutors do not care about their loved ones and turn them into objects of care as part of their own spiritual journey—as interpersonal sentiments of care may also be involved in their rituals of care. Instead, as I understand it, it is to present a particular theory of mind, underlying these individuals’ actions, in which both social configurations and one’s state of being are heavily preconfigured and shaped by karma. The expected and aimed ‘authentic desire’ (to care and find meaning in doing so) in the former case is regarded as belonging to a domain that is to be transcended with repetition, discipline, and embodiment of appropriate forms in Aulino’s ethnography. Thus, such understanding of personhood and mind re-configures relations of care in such a way that the tension-bearing discourse on ‘object or subjects of care’ melts and breaks down to its fundamental element: the act of care itself. This point will become especially important toward the end of this writing. 

Locating Agency

As was mentioned, L’Arche’s practice and philosophy of care towards cognitively disabled adults portray them as subjects with a distinctive moral agency who partake in the care relationship and acts of care—thus becoming subjects of care with a voice. Yet, in McKearney’s other writings, we learn more about how such understanding generates tensions between the caregivers’ practices of care and the cognitively disabled individuals’ agency, autonomy, and desires. We see, through ethnographic examples, how a cognitively disabled individual’s agency may not only resist the caregivers’ acts that supposedly aim for the cognitively disabled individual’s well-being but also—at times—contradict the care-recipient’s own desires. As an example, Martha, a cognitively disabled adult in L’Arche, enjoys going to pubs and restaurants but may often want to not go out. In such cases, the caregivers had to “persuade Martha that she wanted to go out” (2021a: 156). In other words, they expressed these desires, such as not wanting to go out, as contradicting the person’s more deep-seated and long-term preferences—requiring persuading. Such dynamics of persuasion also played a role when caregivers had to talk Martha into taking a bath every day regardless of who bathed her on that day, as the institution hoped Martha would eventually acknowledge the health-maintaining need itself regardless of who the caregiver was and not get attached to specific individuals in the process. In such attempts, it could be said that consent of a hypothetical kind is assumed in which if the cared-for could understand, then they would endorse such acts of persuasion. Yet, their mental capacity prevents them from acknowledging, understanding, and managing their dependence. The caregiving acts, in these cases, also suggest that “the current self that does not want to be cared for has less authority than a hypothetical self that would” (ibid.: 162). This, as McKearney explains, implies that such a hypothetical self would be content to be cared for by anyone, and it is Martha’s responsibility to become such a self. Thus, the strategy of using persuasion is an attempt to turn the care-recipient into a person who would eventually acknowledge her dependence, manage how one relies upon others, and ‘graciously’ receives care. This is also an attempt “to get another to care for themselves by getting them to accept one’s caring impulses as their own” (ibid.: 163). Interestingly enough, in L’Arche, “persuasion fails all the time” (ibid. 161). Martha and her housemates often may ignore such attempts, actively undermine them, or even erupt emotionally during acts of persuasion. More interestingly, Martha’s sister, Sue, explains such resistance to care as a sign of agency and even virtue as, in the case of refusing to get bathed by certain caregivers, the resistance “implies a healthy respect for her body and who becomes intimate with it” (ibid.: 163). Sue also sees Martha as refusing to accept her dependence. Therefore, a conflict arises in which there is a contest of two different conceptions of independence: “acknowledging dependence and overcoming it, or internalizing care and resisting it” (ibid.: 164). This then leads McKearney to argue that people with intellectual disabilities ‘misfit’ in relations of care “not because they are too dependent and incapable, but because they are too independent in the sense of being agentive, insubordinate, and unruly” (ibid.: 165). 

The presented argument of McKearney, though intriguing, must be taken with caution by contextualizing it in so-called ‘Western’ notions of self, agency, and personhood. The conflict portrayed by him, which is that between internalizing care or resisting it, already suggests and assumes an understanding of autonomy which consists of pursuing activities that aligns with one’s desires. In other words, the mentioned conflict only arises or becomes problematic when we equate autonomy with a desiring authentic self. This becomes apparent when contrasted with many other ethnographies in which freedom or autonomy is achieved precisely through overcoming/defeating/transcending the sort of desires that are deemed to be part of the authentic self that certain liberal notions may stress. And, as could be inferred from the above section in which there was an emphasis on transcending intentions and desires and performing ritual, Aulino’s ethnography is one of such ethnographies that contrasts taken-for-granted notions of the self, agency, and autonomy. To expand on this contrast and also bring insights to the case of Thailand, one should pay attention to how Aulino makes use of the concept of the “social body” (p.71) in describing how every person in Thailand has a place in the world and in the social hierarchy that karma generates. This is a social body in which social harmony is of utmost priority. In it, the Thai society at large is likened to a body in which some social groups serve as the ‘face’, being in charge of making decisions and directing the actions of the body; and others occupy other ‘parts’ of the social ‘body’—fulfilling other needs of society and keeping it intact. Roles in the social body are inherently unequal. And “karma and merit are the invisible roots of stations in life” (p.82). In my understanding then, many of such positions in the social body are pre-configured and given to individuals through a karmic allotment. In this form of social harmony, health is also vital (as government biopolitical campaigns suggest) to the social body, calling for volunteers (who are often from lower socioeconomic classes) to take up the task of care for the elderly. Thus, the lack of discourse on agency and autonomy becomes apparent in this social framework. Such discourse would perhaps prove to be barren when much of both personal encounters and social configurations are the work of karma and the best response, in this framework, to what life offers is to accrue merit through action and ritualized behavior. Hence, the discussions, dilemmas, and arguments surrounding personhood and agency that are present in L’Arche and McKearney’s work become rather irrelevant in this way of life. Piecing together various pieces in Aulino’s ethnography, one could perhaps conclude that, to the Buddhists of Thailand, the ‘self’ is simply both a given and a transient entity—or even a product of the mind—that ought to be overcome and transcended to find joy and harmony. The ritualized acts of care are merely a means of the desired process that reaches out to enlightenment.  

Despite All, Care is There to Do

When social harmony becomes intertwined with social hierarchy and when life circumstances are often traced to “unknowable or unspecified antecedents of one’s own doing rather than to systematic inequalities or forms of societal segregation” (p.120), then, Aulino argues, “care works hand in glove with systematic oppression” (p.114). In the karmic social framework, which is also constituted by much of volunteering care work, “karma does the heavy lifting for hegemony” (p.123)—aiding in internalizing and policing while spreading the effectiveness of the dominance of a few over the many. The discrimination that occurs and the links of oppression that become obscured then give way to violence. This is a rather tricky argument and ground in which, as Aulino acknowledges, it would also be another form of violence to bring about a dogmatic analysis in which a felt reality by Thai people is delegitimized and the moral/ethical commitments behind such framework are dismissed (p.123). At the same time, arguing for a logic of care in social structures “brings with it a danger of being read as an apologist for repressive regimes” (p.123). Therefore, she stresses the importance of understanding the context of “Thai-ness” (p.126) before running towards such dismissive conclusions. Yet, she also cannot help but point out the social problems and inequalities that such karmic understandings generate. She brings some more sophistication to the issue by raising ongoing debates among Thai people which open new potential interpretations to certain elitist Buddhist practices and by bringing in some voices from social activists—urging for a reconsideration of the relationships among state propaganda, religious ideology, and lived experience. Still, she finds herself unable to offer any solutions to these deeply held and self-perpetuating structural mechanisms that may obscure oppression. I will soon return to this.

In one of McKearney’s more recent articles, he asks the question of what happens to L’Arche’s ethical project of cultivating reciprocal friendships when care-recipients are violent to their caregivers. As McKearney presents in various ethnographic accounts, people with cognitive disabilities may at times resort to physical force in reacting or resisting. In such potential scenarios, caregivers, in their training, are encouraged and expected to charitably reinterpret such transgressive behavior not as a result of malice but as an unusual way of expressing understandable emotions. At times, such violent expressions of ill intent were read as a form of communication that required understanding. None of this institutional attitude hinted that people with cognitive disabilities are to be held responsible for the breakdown in the caring relationship while it was expected for caregivers to read such violent acts as opportunities to transform their caring relation and understanding through reinterpreting. When any attribution of malice to care-recipients was blocked off, it denied caregivers both the opportunity to detach from people with cognitive disabilities or hold them accountable for wrongdoing. This situation disabled “other mechanisms of detachment or reciprocity through which violence can be dealt with in other social settings” (2022: 965). This pushed caregivers into an even deeper engagement with the cognitively disabled individuals’ ill actions, giving caregivers simultaneously “more vulnerability and more obligations” (ibid.: 965) without providing caregivers any way of discharging them. Although this ethic of care was derived from the philosophy that departed from mainstream organizations’ policies of professional detachment that neither prevented instances of violent abuse for the intellectually disabled nor offered any sophisticated way to understand them, one could also see the dire problems that caregivers may face in L’Arche in these asymmetrical caring friendships. What caregivers in L’Arche faced as a problem was insufficient involvement, responsibility, and reciprocity. The paradox that emerged is how, as can be seen above, L’Arche wished to make cognitively disabled subjects of care with distinct agencies while not fully respecting or engaging people with disabilities as intentional subjects. The thought that people with disabilities might be held to account for their actions only comes to the surface in good actions but not all actions. When things went wrong in L’Arche, the only question managers directed to caregivers was ‘What are you doing wrong?’ instead of questioning whether individuals with cognitive disabilities “might want something beyond the frame of this kind of engagement” (ibid.: 967). This led some caregivers to feel not only shame at their incapacity to fulfill their responsibilities but also paranoid at the prospect that care-recipients were constantly and deliberately directing malice at them. This, in turn, transformed into a deep resentment “at their managers, at their fellow carers, and most devastatingly of all, at those they had come to support” (ibid.: 968)—which only were encountered by the author in his interviews. Thus, McKearney argues, this kind of direct, hopeful, and caring ethic, when applied to violence, “ended up producing the very ghosts it was meant to banish: those of people with intellectual disabilities as problematic presences to be contained and blamed” (ibid.: 968).

The presented set of pictures of L’Arche leaves one—at least me—speechless and disturbed by the fact that care without such deep problems, in this case, almost becomes an impossibility. The romantic and positive image, along with novel attitudes of care, of L’Arche too cannot escape from the limits of engagement with and care for cognitively disabled individuals. When unsettling feelings that bring despair of care emerge at this point, I would like to return to Aulino’s ethnography. Despite her pessimistic outlook on the overall situation in Thailand, she especially wishes to point out how there are, within the very patterns of domination, “the means and mechanisms by which people are providing for one another” (p.142). Hence, instead of committing the violence of failing to recognize the care people show for their world, victimizing her interlocutors through proclamations of false consciousness, and denying them any creative possibility to use old forms in new ways, “one must bear witness to care” (p.142). Perhaps, as the problems and issues are present in both L’Arche and Thailand, “the way to work toward the alleviation of disenfranchisement and systematic oppression is to offer care” (p.142). One could see how action and doing is necessary, and transformative—even when repetitive without a particular focus on sincerity. The thought that acting can make and change the world compels people to show up: “Care is there to do. And what we do matters” (p.150).

Image: Care Worker Helping Elderly Woman by Ikon Ikon Images