Body Language

Narrating illness and disability

G. Couser

• Publisher: Routledge
• Year: 2019
• Print ISBN:
  9781138693081
• eBook ISBN:
  9781315531236
• Topic: Literature
• Subtopic: Literary Criticism
• Index: Literature

As much as we may like to evade them, illness and disability inescapably attend human embodiment – we are all vulnerable subjects. So it might seem natural and inevitable that the most universal, most democratic, form of literature – autobiography – should address these common features of human experience. Yet for the most part, autobiographical writing expressive of illness and disability remained quite uncommon until the second half of the twentieth century, when it flourished concurrently with successive civil rights movements. Women's liberation, with its signature manifesto Our Bodies Ourselves, supported the breast cancer narrative; the gay rights movement encouraged AIDS narrative in response to a deadly epidemic; and the disability rights movement stimulated a surge in narratives of various disabilities. Conversely, the narratives helped to advance the respective rights movements. Such writing, then, has been representative in two senses of the term: aesthetic (mimetic) and political (acting on behalf of). It has done, and continues to do, important cultural work.

This volume explores this phenomenon using the latest critical theories and from the perspectives of patients and creative writers as well as academics. It attends to the problematic intersection of trauma and disability; it encompasses graphic narratives, essays, and diaries, as well as full-length memoirs; and it examines the ethical as well as the aesthetic dimensions of narrative. This book was originally published as a special issue of Life Writing.

The Illness Essay

Ann Jurecic

ABSTRACT

Montaigne invented the essay genre in response to a near-fatal injury. He produced a flexible, wandering form that was especially well suited to confronting illness, injury, and mortality. Literary critics, however, have focused attention on illness memoirs to the exclusion of the illness essay. Given the publication of a number of extraordinary book-length illness essays in 2013–2014, among them Leslie Jamison’s The Empathy Exams, Eula Biss’s On Immunity: An Inoculation, and Rebecca Solnit’s The Faraway Nearby, critics should pay attention to the illness essay. Following Montaigne, these essayists examine the workings of the writers’ minds, explore tangents, and make unexpected connections. At the same time, they take advantage of the hybrid essay, blending memoir, contemporary journalism, and cultural criticism. Their projects overlap in notable ways. They all contemplate how people conceive of their own suffering and the suffering of others. And at the core of their work is a shared interest in the complexity of empathy, which they recogniSe as a felt response, a social practice, a philosophical conundrum, and a writer’s tool. In the end, they affirm Montaigne’s commitment to using the essay to contemplate how to live a good life.

The essay was born out of suffering, injury, and recovery—the consequence of a near-fatal riding accident. One day in 1569 or 1570, Michel de Montaigne was riding on his estate in the French countryside with a small group of men and he decided to travel ahead on the trail without them (Bakewell 25). One of the riders behind Montaigne decided to show off his horse’s speed and, coming around a turn, hit him and his horse with full force. Montaigne was thrown from the horse and lost consciousness:

There lay the horse bowled over and stunned, and I ten or twelve paces beyond, dead, stretched on my back, my face all bruised and skinned, my sword, which I had had in my hand, more than ten paces away, my belt in pieces, having no more motion or feeling than a log. (‘Practice’ 269)

As Montaigne’s servants carried him back to his home, he was bleeding internally and he thrashed about and tore at his doublet, appearing to be in great pain. His memory of that journey was quite different. He recalled a feeling of calm and ease. It seemed, he said, that ‘my life was hanging only by the tip of my lips; I closed my eyes in order, it seemed to me, to help push it out, and took pleasure in growing languid and letting myself go’ (269). Once he was resting in his own bed, he refused pain medication, accepting what he expected to be ‘a very happy death’ (272).

On its own, this account from Montaigne’s essay, ‘Of Practice’, is a mere anecdote. But as the piece progresses, Montaigne shifts his focus from what happened, to what he learned, and then to his writing practices. ‘This account of so trivial an event’, he says about ‘Of Practice’,

would be rather pointless, were it not for the instruction that I have derived from it for myself; for in truth, in order to get used to the idea of death, I find there is nothing like coming close to it. (272).

Before his injury, Montaigne was no stranger to death. In the five years before he began to write essays in 1572, his father died, as well as his brother, his first child, and his closest friend. He had also read a good deal of philosophy on the topic of death. He knew well Cicero’s argument that studying philosophy ‘is nothing else but to prepare to die’ and understood its reasoning—that one could not simply disarm death’s strangeness by repressing or ignoring one’s human frailty (‘That to Philosophize is to Prepare to Die’ 56). Paying attention to mortality, the argument goes, deprives death of its greatest power: to make one afraid.

But Montaigne had other ideas. Rather than accepting the reasoning of philosophers, he wanted to understand the workings of his own mind, how he thought about death and life. He developed a new practice of self-study, enacted through reading, contemplation, and writing. To accommodate this new mode of thought, he required a form of writing flexible enough to allow for mental wandering and exploration of the unknown and unknowable. He called his writings essais, meaning attempts, a name that suggests their speculative quality. They were not arguments or proclamations, but personal reflections that posed variations of the question, ‘What do I know?’

Montaigne recognised that his writing might appear to be an exercise in vanity, but he resisted such judgments. Although his primary objective was to study the workings of his own mind, he also looked outward. He turned to his library, a collection of roughly a thousand books of literature, philosophy, history, politics, and religion that was extraordinary in its day. And he looked to his experiences—material, embodied, political, and social—as he touched on topics as varied as the fear of death, vanity, the preferences and workings of his body, and the variety of human experience as he knew it, including an essay on cannibalism (a ritual practice that he found honourable in contrast to the barbarism of European wars). In ‘Of Practice’, he defends himself against the charge of self-indulgence, explaining that his work is both an intellectual endeavour in the tradition of Socrates and a literary challenge. His project, he writes,

is a thorny undertaking, and more so than it seems, to follow a movement so wandering as that of our mind, to penetrate the opaque depths of its innermost folds, to pick out and immobilize the innumerable flutterings that agitate it. (273)

In his efforts to portray the self, the body is as important as the mind ‘I expose myself entire’, he declares: ‘my portrait is a cadaver on which the veins, the muscles, and the tendons appear at a glance, each part in its place … It is not my deeds I write down; it is myself, it is my essence’ (274).

Montaigne’s sense of the unity of mind and body may seem surprisingly modern. The body, for him, is not a mechanical object of knowledge; he recognises that it contributes to experience, and thus to knowledge of the whole self. Montaigne’s essays may appear to position themselves against Cartesian dualism, but Descartes’ The Description of the Human Body would not be written for more than 70 years. It is the case, however, that Montaigne challenged pre-Cartesian dualism. In ‘Of Presumption’, he maintains,

Those who want to split up our two principal parts [soul (or mind) and body] and sequester them from each other are wrong. On the contrary … [w]e must order the soul not to draw aside and entertain itself apart, not to scorn and abandon the body … but to rally to the body, embrace it, cherish it, assist it, control it, advise it, set it right and bring it back when it goes astray; in short to marry it and be a husband to it so that their actions may appear not different and contrary, but harmonious and uniform. (484–5).

From a distance of nearly 450 years, critics can more fully appreciate the broad cultural and political significance of Montaigne’s radical experiment, and his work is currently enjoying a resurgence in popularity. An anonymous essay in the New Yorker, ‘Me, Myself, and I’, identifies Montaigne as ‘the “first modern man”’ because he portrays the self as a protean consciousness:

His belief that the self, far from settling the question ‘Who am I?’, kept leaping ahead of its last convictions was in fact so radical that for centuries people looking for precedents had to resort to a few fragments of Heraclitus on the nature of time and change. (n. pag.)

Montaigne engaged questions of justice and morality with what feels to the New Yorker writer like a contemporary scepticism about truth. For Montaigne, she or he writes, ‘there may be no truths, only moments of clarity, passing for answers’ (n. pag.). Philosopher Kwame Anthony Appiah, offers a different label for Montaigne: ‘the first liberal.’ Appiah finds evidence of Montaigne’s liberalism a century before John Locke began to formulate his political philosophy. Montaigne’s liberalism, Appiah writes, ‘is not so much a doctrine as a disposition, a habit of mind … compounded of two principle elements: An abhorrence of cruelty and a sense of the provisional nature of human knowledge’ (n. pag.). He points out that ‘Montaigne was urging toleration at a time when you could be burned at the stake for an error in theology.’ Montaigne’s examination of himself as ‘a free individual, engaged in the making of a life of his own’ was not, Appiah observes, ‘a retreat from politics, but a form of it.’ Together Appiah and the New Yorker writer make clear that Montaigne began to write essays as a literary experiment, but that his presentation of selfhood and his conviction that self-reflective writing constituted a way of knowing diverged radically from how the self and knowledge were typically understood in the sixteenth century. Montaigne’s essays marked the emergence of an egalitarian, open-minded, deliberative, and demystifying liberal self.

Although we live in a fundamentally different world than Montaigne did when he was inspired by injury and fear of death to invent the essay, writers are still motivated to compose meditative essays by such experiences. In the tradition of Montaigne, contemporary essayists such as Eula Biss, Leslie Jamison, Claudia Rankine, David Shields, and Rebecca Solnit put the workings of their minds on display and question received ways of thinking about illness, embodiment, and mortality.¹ And yet, the illness essay has not garnered much attention from critics in literary studies and the medical humanities. Despite the influence of Virginia Woolf’s On Being Ill and Susan Sontag’s Illness as Metaphor, the focus has been on other genres: the novel, poetry, and more traditionally autobiographical forms of life writing.

It’s time for critics to pay attention to the illness essay.

The twenty-first century essay

For scholars of life writing who have focused primarily on memoir and autobiography, it’s worth pausing to examine what the contemporary essay is, what it does, and how it differs from the work of Montaigne. Among today’s essayists, John D’Agata has distinguished himself as practitioner and a historian of the form, and as a vocal advocate for the genre. In his brief introductions to each of the 30 pieces collected in The Next American Essay, works written between 1975 and 2003, D’Agata reflects on the confusion and uncertainty that is the genre’s focus and its inspiration. He begins by offering three epigrams about the essay, each of which stands alone on a page.

‘These are the facts, my friends, and I have much faith in them. ~ Cicero

‘What do I know?’ ~ Montaigne

‘So I shall essay myself to be.’ ~ Emerson

Although composed by masters of the essay, these lines hardly seem to describe the same genre, and D’Agata delights in their contradictions. The essay, he suggests, can be made to serve a range of purposes, depending on the time and place, the writer and reader. So in his headnotes for each of the selections in The Next American Essay, D’Agata repeatedly draws attention to the genre’s malleability. He writes, for instance, that, ‘Some essays are bastards of the mind’s indecision. Some essays are poured, molten, from a pure ore of information’ (317). He wonders, ‘Maybe the essay is just a conditional form of literature—less a genre in its own right than an attitude that’s assumed in the midst of another genre’ (41). He also suggests, ‘Maybe every essay automatically is in some way experimental—less an outline traveling toward a foregone conclusion than an unmapped quest that has sprung from the word question’ (95). Later he considers yet another alterative: ‘Maybe we’re wrong; maybe the essay really is just a philosophical investigation that, masked as it sometimes is by the infusion of other forms—by story or memoir or lyric or fable[,] we’re just ignoring [in] its most basic form’ (219).

D’Agata’s descriptions of nonfiction in general and the essay in particular tend toward the allusive and elusive; nonfiction, after all, is named for what it is not. He comes closest to defining the essay when he describes the ‘lyric essay’ as an amalgam of ‘the principle strands of nonfiction’:

It takes the subjectivity of the personal essay and the objectivity of the public essay, and conflates them into a literary form that relies on both art and fact, on imagination and observation, rumination and argumentation, human faith and human perception. What the lyric essay inherits from the public essay is a fact-hungry pursuit of solutions to problems, while from the personal essay what it takes is a wide-eyed dallying in the heat of predicaments. (436)

As D’Agata’s description suggests, he is less concerned with naming the formal conventions of the genre than with describing the acts of essaying: ruminating and arguing, pursuing and dallying, thinking and writing. At the foundation of the genre, in other words, he has located a set of practices that take precedence over any particular expectations about form.

D’Agata’s notes to the reader at the beginning of The Lost Origins of the Essay are especially valuable for a discussion of essays about illness and mortality. The first entry in the collection—D’Agata’s candidate for the essay’s earliest ancestor—is ‘The List of Ziusudra’, written around 2700 BCE in ancient Sumer after a catastrophe far greater than the one that inspired Montaigne more than 3000 years later. Sumerians, D’Agata says, invented civilisation itself: they developed agriculture, the wheel, the city, government, law, and accounting, and they also brought nonfiction into being by using writing to record information. Then came a great flood, and in the aftermath, Ziusudra, who was the last king of Sumer before the disaster, recorded a list of the problems he had faced and the advice he had to offer. He began,

Back in those days—in those far remote days—back in those nights—in those far away nights—back in those years—in those long ago years—back at that time when the wise ones were wise, the wisest of them all had given up hope. (7)

D’Agata sees in Ziusudra’s list an alternative version of nonfiction, writing whose purpose is not recording information, but rather expressing thoughts that are compelled ‘by inquiry, by opinion, by wonder, by doubt’ (4). Ziusudra’s list, he says, is ‘a mind’s inquisitive ramble through a place wiped clean of answers. It is trying to make a new shape where there previously was none’ (4).

D’Agata’s account of this early essay as a response to anguish and destruction appears, like Montaigne’s ‘Of Practice’, to be a precursor to contemporary essays about illness, injury, and human vulnerability. Illness is a disaster on a scale different from Ziusudra’s. And yet it, too, transforms the world for the sick and their, families, friends, and communities. It disrupts the order and assumptions of everyday life, wiping the everyday world clean of answers. If uncertainty and the unknown are the foundation of the essay as a genre, then illness is a fitting subject. The disruptions of illness inspire the practices that D’Agata identifies as foundational to the essay, among them questioning, contemplation, deliberation, and, of course, writing.

Embodiment in the contemporary essay

Some of the most powerful nonfiction books from 2013 and 2014 are illness essays: Leslie Jamison’s The Empathy Exams, Eula Biss’s On Immunity: An Inoculation, and Rebecca Solnit’s The Faraway Nearby. In these book-length essays, the writers echo Montaigne, asking in their own ways, ‘What do I know?’ and ‘What do I feel?’ They all begin with physical crises—their own or other people’s—that bring questions about mortality to the fore. Like Montaigne, they also carefully observe the workings of their own minds. Formally the essays are less digressive than Montaigne’s, but they still explore tangents and make unexpected connections between personal experience and the larger world. They also ...

Table of contents

• Cover
• Half Title
• Series
• Title
• Copyright
• Contents
• Citation Information
• Notes on Contributors
• Introduction – Body Language: Illness, Disability, and Life Writing
• 1. The Illness Essay
• 2. View from the Sickroom: Virginia Woolf, Dorothy Wordsworth, and Writing Women’s Lives of Illness
• 3. Mindful Skin: Disability and the Ethics of Touch in Life Writing
• 4. Life Writing and Graphic Narratives
• 5. Interactions: Disability, Trauma, and the Autobiography
• 6. Life Writing and Dementia Care: A Project to Assist those ‘with Dementia’ to Tell their Stories
• 7. ‘Ah, but I was so much older then, I’m younger than that now’: Cancer and a Virtual Relationship
• 8. ‘But That’s Just What You Can’t Do’: Personal Reflections on the Construction and Management of Identity Following a Late Diagnosis of Asperger Syndrome
• Index