I want to talk about three quotations that I admire and consider right in one sense, but that have implications that raise problems. Pursuing these problems leads, eventually, back to illness narratives, why they seem necessary, and at least some of the problems of both writing and receiving such narrations. I am trying to work something out for myself and for those interested in following the process—I don’t begin from a completed thought, and I what I get to…you can judge for yourselves. I apologize in advance that this process is going to involve referring to a lot of authors; this is one of my more scholastic posts. I think that way, when I have to.
My title adapts Bruno Latour’s Reassembling the Social (2005), in which he argues that “the social” is not a thing or substance. Instead, the social refers to multiple processes of reassembling: putting together and holding together together different sorts of groups and affiliations: families, clans, clubs, congregations, and nations. Human life consists in perpetually claiming and reclaiming the social; it takes work, in Harold Garfinkel’s sense, but I won’t pursue the genealogy of Latour’s useful conceptualization. I want to think of selves the way he imagines the social, as on-going works of reassembling.
My first quotation is the title of Judith Butler’s 2005 book, Giving an Account of Oneself. Butler doesn’t begin with the idea of the self; she doesn’t seem much interested in the self until fairly late in the book, when she’s talking about Foucault. Butler’s discussion proceeds by nuances. I want to say something simpler. My problem with this phrase, giving an account of oneself, is that it implies there already is something called a self that “one”—you and I, each of us—is in at least tenuous possession of, and we then give accounts of it. At least that’s how I think many people would hear Butler’s title, because it’s how many people experience themselves, as having a self. We readily observe people making frequent use of reflexive pronouns and stock phrases that presuppose having a self of one’s own.
I want to reverse Butler’s title phrase. I want to consider how giving various accounts is the work of claiming a sort of self, or more radically, bringing a self into existence, albeit an existence that is never more than processes, or work, of perpetual reassembling. Foucault remains behind what I’m saying: self-claiming subjects must use discourses that are available according to their historical positioning. But I’m more influenced by Erving Goffman, who never chose to clarify just what he meant by the self that is presented in everyday life.
Goffman’s self is constituted in reciprocally dependent acts of displaying demeanour to others and claiming others’ deference. Demeanour comprises acts that include grooming, appropriate manners, wearing uniforms and insignia, and utilizing distinctive speech. My writing as I have been doing, casually assuming that everyone knows who Butler, Foucault, and Goffman are, is work of scholastic demeanour. Writing this way displays me as a certain sort of person, who knows how to throw those names around and expects others to recognize what that ability entitles me to, which is their deference.
Deference comprises acts in which we give others their due, recognizing what their demeanour entitles them to. At some point, demeanour and deference become difficult to disentangle; each depends on the other. For my purposes, displaying demeanour and claiming deference are ground-zero of reassembling the self. The original accounts of the self are presented in the media of bodily posture, how the arms and legs are positioned and moved, and perhaps most of all, facial expression. My key point is that giving these originally embodied accounts, later elaborated in verbal accounts, is the initial assembling and then perpetual reassembling of the self. What we talk about and what we experience as our self comes to be and is maintained in works of reassembling. Those works include giving what Butler, following numerous others, calls accounts.
The second quotation is one I read only recently, although I now find out that it’s well enough known to be available on a tee-shirt, if you want to get one. In a 1961 interview (the full text of which I have not been able to recover; it was with Tom Driver and appeared in The Columbia Forum, 4:3, Summer, 21-24), Samuel Beckett said: “To find a form that accommodates the mess, that is the task of the artist now”. Here I’ll finally get to illness narratives. The problem of narrating an illness is that mess is central to what we’d call experiencing illness, whereas, narrative cleans up by ordering mess in multiple ways: temporal, spatial, causal, moral, existential. But—to give form to the mess is to lose what’s messy, which is to lose the essence of the experience being represented—to lose its truth. That problem of ordering the mess is shared by healthcare workers and ill people, mutually. Among various healthcare workers, I’ll focus on, or pick on, physicians.
For me—on my account—physicians solve the problem of the mess not wisely but too well; their institutional placement requires that of them, often at considerable cost to themselves. Physicians get paid to reduce the mess to diagnoses, treatment plans, standards of care, and other textual devices that do give the mess a form. But in cleaning up the mess, physicians (as the well if not best paid front-persons for the medical-industrial complex) frustrate their patients, who feel the denial of what makes their experience so difficult, which is all the mess that cannot be cleaned up, that falls outside medical narrations and finds no acknowledgement in institutional medicine. For one expression of patients’ alienation, here’s Anne Boyer writing about surviving cancer: “and if I live another forty-one years to avenge what has happened it still won’t be enough” (The Undying, 167). [Guilty note to self: does The Wounded Storyteller go too far, without sufficient self-qualifying cautions, in cleaning up the mess of how illness is narrated? Does healthcare research generally follow medicine too far in cleaning up whatever mess is the subject of its research, reducing that mess to the coherence of so many themes, or causal associations, or types of whatever as required by granting councils and scholarly journals?]
Here’s another understanding of the theme of this series of blogs: narrative medicine seeks to acknowledge the mess and give it a recognizable place within healthcare practice, an honoured place. Narrative medicine seeks to empower ill people to express the messiness of their lives, without having to give that form. Narrative medicine seeks to give healthcare workers the multiple capacities needed to acknowledge their own mess and even go so far as to share its anguish with patients. That’s a big ask.
Here’s a quotation to place in juxtaposition with Beckett. “The common struggle gets pushed through the sieve of what forms we have to make its account, and before you know it, the wide and shared suffering of this world is narrowed and gossamer, as thin as silk and looking as special as the language it takes to tell it” (Anne Boyer, The Undying, p. 129). Beckett’s principal solution to the problem he expresses is what we now call theatre of the absurd, exemplified in his greatest hit, Waiting for Godot. It’s a theatrical form that calls attention to life’s more essential formlessness, written in language that continually deconstructs its referential capacity. I don’t think it’s right to call The Undying narrative-of-the-absurd, but Boyer is always aware of the sieve that she’s pushing her experiences through—both the absolute necessity and the irreparable danger of that sieve. Boyer’s sieve is a neat metaphor for what Foucault described as the effects of discourses. A discourse (medical, spiritual; generally institutionally backed for Foucault) is a sieve, and discourses become dangerous to the extent people treat what the sieve filters out as if it didn’t exist, or at least didn’t matter. The work I’d call critical is reclaiming recognition of what preferred sieves filter out.
My third quotation is from Dante, near the end of the Purgatorio, after the poet/pilgrim has climbed the mountain and been at least provisionally cleansed of his sins (he will have to return later, after his death, for full purgation). He encounters Beatrice, who instigated his journey to save his soul, and she prescribes the work he must do upon his return to life, as witness: “Once back there, make yourself write what you see” (Mary Jo Bang, translation, XXXII, 105). That is the self-assigned task of the writer of an illness narrative: once back in a condition of sufficient health, make yourself write what you have seen.
I understand the task that Beatrice assigns Dante as having two complementary goals: first, he must write so that he continues to live with the memory of a journey that he must work to hold in memory, if it is to save his soul. Second, by Dante’s telling what he has seen, others might share this journey and participate in its effect. In my preferred language, The Divine Comedy is a work of reassembling the soul: in reading it and living with it, we acquire what Dante seems to assume is already there by divine gift, whatever is called soul. Going through Purgatory is the ultimate version of giving an account of oneself/soul. For Dante, I think, the soul that already is is purified on the mountain; for me, by going up the mountain, the traveler becomes a soul. I don’t think Dante would find that right, but I live in different times from his, with different presuppositions.
Narrative medicine, in the account I’m trying to cobble together from these fragments, is the work of finding in the scene of illness, people’s capacity for reassembling their selves in ways we can begin by called responsible, in the sense of reflectively chosen. Student doctors are given white coats, and patients are told to put on hospital gowns. Putting those costumes creates the risk of irresponsible, or at least a-responsible, accounts of self. The costumes risk being inauthentic, in what I think Sartre’s use of that word implies: those clothes mark acceptance of a system of demeanour and deference; or in Foucault’s terms, we’re inserting ourselves into a discourse, and assuming that discourse as our mode of speech. But what we put on is from elsewhere, a default solution and thus a-responsible, which is how institutions want people, either as workers or clients: docile bodies, in Foucault’s sense.
But Foucault always recalls that we are never outside discourses, never auto-nomos in what we think, speak, or claim. Any authenticity is a mirage, always receding. There are only degrees of inauthenticity, and that’s how life is, its tension or dilemma. Or, instead of Foucault, read Sophocles, especially Antigone. Whose dress does Rosalind puts back on at the end of As You Like It? At the end of Twelfth Night, there’s a problem finding Viola’s proper clothes; that is problem.
The problem that Butler, Beckett, and Dante all point to—with a supporting cast including Goffman, Anne Boyer, and Foucault—is that narrations can and will reassemble a self, but what self is that? Is it the self we have defaulted into, or can it be a self worth calling, in the most tenuous and even contradictory way, never entirely our own, never fully chosen but aspiring to being, responsible?