Cognitive Disability in Contemporary Fiction

The Pennsylvania State University

The Graduate School

College of the Liberal Arts

SURVIVING THE NARRATIVE SELF:

COGNITIVE DISABILITY IN CONTEMPORARY FICTION

A Dissertation in

English

Sarah Birge

Submitted in Partial Fulfillment of the Requirements for the Degree of

Doctor of Philosophy

August 2012

The dissertation of Sarah Birge was reviewed and approved* by the following:

Susan Squier Julia Gregg Brill Professor of Women’s Studies, English, and Science, Technology, and Society Dissertation Adviser Chair of Committee

Michael Bérubé Paterno Family Professor in Literature and Science, Technology, and Society

Janet Lyon Associate Professor of English, Women’s Studies, and Science, Technology, and Society

Chloe Silverman Assistant Professor of Science, Technology, and Society

Garrett Sullivan Professor of English Director of Graduate Studies, English

*Signatures are on file in the Graduate School.

iii

Abstract

This dissertation is a study of narrative disruption and non-narrative identity formation in “neurofiction,” or neuroscience-themed novels, by contemporary authors including Umberto Eco, Mark Haddon, Jonathan Lethem, and Richard Powers. Telling stories is often described as part of being human, so much so that a coherent narrative has effectively become a requirement for selfhood. This description of self, however, cannot account for people with cognitive disabilities such as Alzheimer’s disease or autism, which often impair one’s ability to construct and communicate a traditional life narrative. As a result, caregivers, legal authorities, and medical professionals frequently assume an absence of selfhood in these individuals, leading to discriminatory treatment and demeaning stereotypes that diminish their dignity and deprive them of social justice. My project evaluates the narrative components of three central criteria for self—continuity, agency, and integrity—through the lens of contemporary fiction. I argue that although each of these criteria is dependent on narrative according to selfhood theories, characters with cognitive disabilities demonstrate selfhood despite their narrative difficulties. Literature, through its imaginative representations of otherwise inaccessible minds, allows us to capture crucially important aspects of self such as embodied memory and non-cognitive agency. My project furthers literary criticism’s history of attention to issues of consciousness while providing current selfhood theories with a much-needed disability studies perspective.

Table of Contents

Acknowledgements ...... v

Chapter 1: The Narrative Identity Thesis ...... 1

Chapter 2: Non-cognitive Continuity: Bodily Memory, Amnesia, and Alzheimer’s Disease ...... 19 Memory, Disability, and The Novel ...... 22 Embodied Memory in The Mysterious Flame of Queen Loana ...... 28 Self-Continuity through Object Interaction in Out of Mind...... 40

Chapter 3: Intelligible Cognition: The Agency of “Ongoing Response” ...... 57 The Narrative Intelligibility Requirement ...... 60 Detective Novels and the Search for Self ...... 65 Spatial Agency in The Curious Incident ...... 67 The (Un)Intelligibility of Autism...... 70 Motherless Brooklyn and the Assumption of Agency ...... 76 The Agency of Touch ...... 81

Chapter 4: Where is Alice? Extended Cognition as a Model for Selfhood ...... 91 Cognitive Integrity as a Requirement for Self ...... 93 Extended Mind ...... 97 The Echo Maker ...... 102 Surrogacy and the Extended Self ...... 109 Still Alice ...... 114

Conclusion: Narrativity in Medical Care ...... 129

Bibliography ...... 139

Acknowledgements

This dissertation could not have been written without the support and encouragement of many people. First and foremost, I am incredibly fortunate to have had the opportunity to work with such an inspiring committee. To Susan Squier, Michael Bérubé, Janet Lyon, and Chloe Silverman: I can’t thank you enough. From my decision to study at Penn State to my introduction to disability studies to my completion of the graduate program, your academic and personal guidance have been truly invaluable.

I would also like to thank my parents and the rest of my family. They have always stood behind my convoluted career path, which they learned about with interest and occasional skepticism but never tried to direct.

This project has been supported by the generosity of a number of programs and individuals. I am grateful for the kindness of Josephine and Barry Weiss, who sponsored the Weiss Fellowship to foster collaboration between the sciences and the humanities. Additional support was contributed by several of the university’s interdisciplinary initiatives, including the Rock Ethics Institute, the Science, Medicine, Technology, and Culture group, and the WPSU-SMTC Public Service Media group.

Lastly, I would like to express my appreciation and love for the many friends and mentors who have supported me through the ups and downs of graduate school and dissertation writing. To Dan Threet, Liz Kuhn, Leah Warner, An Trinh, Matt Weiss, Alex Stehn, Shannon Walters, Angela Ward, Todd Penner, Andrew Evans, Dan Haggerty and the many others who helped me along the way: thank you all.

This dissertation is dedicated to my grandmothers.

Chapter 1: The Narrative Identity Thesis

“Each normal individual of this species makes a self. Out of its brain it spins a web of words and deeds.” —Daniel Dennett1

In the past three decades, scholars in disciplines ranging from neuroscience to psychology to philosophy have increasingly emphasized what is known as “the narrative identity thesis,” which states that people organize their experience of the world and construct their selfhood2 through narrative. In these theories, narrative does not describe the self; it creates it. Historically, the self of Western culture has not been seen as a norm so much as a natural given: the self is “coherent, bounded, individualized, intentional, the locus of thought, action, and belief, the origin of its own actions, the beneficiary of a unique biography.”3 However, this “unique biography” requires a very particular form in order to count as a narrative of coherent selfhood, and while there are many other theories of self in academic research,4 the theory of the narrative self carries a surprising degree of legal, political, and cultural weight. As I will demonstrate, the narrative requirement that results from this common definition of self dominates our understanding of identity, preventing many people with cognitive disabilities from being afforded the social and legal status accorded to persons.

This emphasis on a narratively-constructed self has gone relatively unchallenged across the varied fields that examine and attempt to define selfhood. Narrative psychologists, for example, study how humans construct meaningful identities through narrative. As Sean O’Connell writes, to create identity through narrative is to “engage in

2 the process of integrating the past, present, and future into a coherent whole in both thought and action.”5 In “Life as Narrative,” Jerome Bruner argues that we achieve this coherent whole by constructing ourselves autobiographically, using narrative scripts to both shape and create our experience.6 According to Dan McAdams, although narrative identity is not exclusive to Western society, it is particularly characteristic of it; he argues that the Western emphasis on individuality has created “a veritable cultural imperative” to create coherent, unified selves and make narrative sense of life.7 Other scholars emphasize an inability to distinguish an “authentic” self that pre-exists any narrative formulation. For example, unlike psychologists who seem to see narrative as a framework for retelling the self, Roy Schafer believes that selves do not exist before they are told through narratives; the self is a story.

Investigations of the self in philosophy frequently describe a similar process of meaning-making through narrative. For example, Alasdair MacIntyre argues that personal identity is meaningless unless interpreted in a narrative and that the “unity of a human life is the unity of a narrative quest.”8 Marya Schechtman further defines the specifics of narrative self-construction while emphasizing that persons must conceive of their lives as having the form and logic of a “conventional, linear narrative.”9 She writes,

“At the core of [the narrative self-constitution view] is the assertion that individuals constitute themselves as persons by coming to think of themselves as persisting subjects who have had experience in the past and will continue to have experience in the future, taking certain experiences as theirs...it is their doing so which makes them persons.”10

Whether the construction is seen as intentional or unconscious, narrative unifies the subject, situating the self temporally in a coherent and cohesive story that makes sense of

3 the chaotic sensory inputs and experiences of the embodied life. Scholars describe this narrative self as necessary for subjectivity, personhood, agency, and autonomy. Simply put, to have a self at all is to have a narrative self. As Fireman, McVay and Flanagan explain in their introduction to Narrative and Consciousness, “Narrative does not merely capture aspects of the self for description, communication, and examination; narrative constructs the self.”11

Like the narrative psychologists and philosophers just mentioned, several neuroscientists, including V.S. Ramachandran, Antonio Damasio, and Owen Flanagan, suggest that consciousness itself is a narrative process with biological underpinnings

(which are currently only partially understood). Daniel Dennett explains that the narrative conception of self is consistent with the neuroscientific understanding of the brain, which contains distributed processing systems rather than one neurological center that would produce a stable organization of experience. To analyze the intersection of these systems, the place where stories told about and by the self intersect, he writes that the self is a

“center of narrative gravity,” a useful fiction allowing us to compose a coherent model of ourselves.12

In each of these fields, proponents of the narrative identity thesis appear to use the term “narrative” in the most limited sense—that of a narrated event or sequence of events; in other words, they use it as a description of linearity or causality. Philosopher

Daniel Hutto, for example, defines narratives as “complex representations that relate and describe the course of some unique series of events, however humble, in a coherent but selective arrangement.”13 He explains in a footnote that there is no agreed upon definition, and that we are no worse off when using our “pre-theoretic, unanalyzed—

4 ordinary—understanding of narratives” than we are when we “make free use of notions of such ‘knowledge’ or ‘causation.’”14 Of course, many philosophers who would never be content to leave “knowledge” or “causation” unexamined have been quite willing to let

“narrative” operate without further interrogation. However, the unexamined use of the term is much more problematic than Hutto claims, as the reduction of narrative to its most basic and traditional forms subtly develops into a requirement for specific elements to be present in order for selfhood to exist. As philosopher Anthony Kerby explains, “In the same way that a story traditionally demands followability and closure, we tend to expect unity and continuity in other people’s lives and in our own.”15 In other words, we strive to impose a kind of narrative coherence on our experiences following a very basic narrative trajectory of progress in which events are given meaning based on those that precede and follow them. Narratives focusing on temporal emplotment, sequences of events, create a “readable self” that experiences continuity through time, according to

Kim Worthington, who contends that texts that fail to conform to these narrative norms result in “the abolition of any possibility of coherent personhood whatsoever.”16 By proving “unreadable,” those with certain cognitive disabilities are thus cut off from

“coherent personhood” and the social and legal standing attached to it.

From Aristotle to Kant, the philosophical tradition has long emphasized rationality as a basis for human rights.17 The shape of the narrative self is thus a reflection of the cognitive abilities and motivations of the teller, two more specific requirements for the production of genuine personhood in these theories. Rationality is expressed in a particular form, that of the biographical narrative, as seen in Locke’s conception of the person as someone who can narrate their experience, and it is demonstrated in particular

5 in the ability to shape that narrative, to choose one’s own story. Historian Roy Porter traces this concept back to Locke’s belief that the self stems from both experience and education as well as Enlightenment ideals of man as the “author of his own destiny.”18

Narrative and selfhood, on this well-established view, should be whole, individual, and biographical, representing an achievement that Porter argues “still carries a powerful appeal, and it squares with other values—democracy, freedom of speech, equal opportunities—which we all hold dear and to which all Western regimes at least pay lip- service.”19

All of these academic fields delineate a self that is consciously produced through what Nikolas Rose terms “therapies of normality,” procedures for shaping our identities using “precise ways of inspecting oneself, accounting for oneself, and working upon oneself in order to realize one’s potential, gain happiness, and exercise one’s autonomy.”20 While the process of self-making involves a series of deliberate choices,

Rose argues that to engage in this process is no choice at all but rather an obligation we are required to fulfill in order to establish and maintain our personhood. Human beings

“must interpret their past, and dream their future, as outcomes of personal choices made or choices still to make yet within a narrow range of possibilities.”21 In the end, narrative selfhood becomes a goal of biomedical citizenship in which individuals are responsible for their own self care and obligated to optimize their health in narrowly defined ways.

On the common view that I am describing, the self is an active and evolving project that one engages in, rather than a fixed object. As McAdams maintains:

People select and interpret certain memories as self-defining, providing them with

privileged status in the life story….To a certain degree, then, identity is a product

of choice. We choose the events we consider most important for defining who we

are and providing our lives with some semblance of unity and purpose. And we

endow them with symbolism, lessons learned, integrative themes, and other

personal meaning that make sense to us in the present as we survey the past and

anticipate the future.22

To be a self in this view is therefore not a matter of merely having narrative capacity; we must also exercise that capacity to shape a story of our lives in a specific, biographical, and culturally interpretable format. Producing such an identity becomes an individual responsibility, and those who are not seen as up to the task may fail to count as persons.

In other words, this cultural imperative on the individual, self-made man is particularly exclusive of those who have difficulty with telling and understanding narrative. The narrative self is a marker of psychological health; disorders of the self are diagnosed through difficulties in language, with a coherent narrative representing a healthy brain and mind and a disorderly story invoking “the transition from person to patient.”23 As literary theorist Peter Brooks notes, “mental health is a coherent life story, neurosis is faulty narrative.”24

English professor Kay Young and neurologist Jeffrey Saver further equate the breakdown of story with disease by providing a taxonomy of specifically narrative disorders that result from brain trauma.25 Describing the loss of narrative ability as

“dysnarrativia,” Young and Saver study correspondences between brain damage (using functional imaging) and narrative impairment. Amnesia, for example, results in the inability to form new long-term memories, meaning that the patient’s life story can only include experiences preceding the brain injury. Such patients experience “arrested

7 narration,” in which an individual becomes “frozen in time,” unable to frame their present circumstances within a linear story from past to future. The other three types of

“dysnarrativia” Young and Saver identify include “unbounded narration,” in which the stories created are unconstrained by actual occurrences and patients fill in gaps in memory with fabricated (and often contradictory) events and explanations;

“undernarration,” in which individuals fail to mentally narrate potential responses and choose between them (that is, they fail to choose between one narrative and another); and

“denarration,” in which individuals fail to temporally organize and extract meaning from sensory input experiences, unable to narratively describe their lives. While amnesic patients “offer an unrivaled glimpse at the power of the human impulse to narrative,” patients who experience denarration “illustrate the inseparable connection between narrativity and personhood.”26 Those who cannot construct narrative “have lost their selves.”27

Considering this study in terms of the narrative identity thesis, we see that the

“disorders” of these individuals with brain damage are largely defined by their inability to consider their actions as part of a coherent narrative that encompasses their entire life and by their inability to choose their self-shaping. Memory and storytelling are inseparable, according to Young and Saver:

Not only does the activity of story production prompt then the production of

memories, but it as well encourages an arranging of events into a state of

coherence, consecution, and consequence—features of what constitute a narrative.

We come to see our lives as understandable because of their apparent integration,

logic, even order: our narratives and their consequent memories tell us that our

lives were so.28

The drive to narrate, they argue, reflects a “deeply human” need to organize experience through a coherent story. Bruner reemphasizes this claim, writing that the emerging view in studies of narrative identity is that “dysnarrativia is deadly for selfhood.”29 He underscores the element of choice and deliberate action in self-construction, writing that a life story is “always a cognitive achievement rather than a through-the-clear-crystal recital of something univocally given. In the end, it is a narrative achievement.”30

The narrative-based definition of selfhood is particularly harmful to people with cognitive disabilities, which frequently involve impairments in narrative formulation, cognition, and communication. These impairments often lead to the perpetuation of stereotypes about the loss or lack of self, identity, and personhood in those without

“normal” brain function. For example, historian Jesse Ballenger notes that in America increasing anxiety about the stability and agency of the self often leads to poor treatment of people with dementia.31 Those with Alzheimer’s are usually not understood as having an intact self, but instead are considered by their loved ones to be different persons that have only remnants of the self that Alzheimer’s destroyed. Even more troubling, individuals with advanced Alzheimer’s and other severe cognitive disabilities may be seen as having no selves at all and are often treated as less than human. From adults deprived of any form of autonomy, decision-making, or social justice to eugenic programs that purportedly ease the “burden” of caring for these individuals, the ethical implications of arguments about selfhood are severe. The normative implications of emphasizing the importance of narrative (which is usually vaguely defined and yet

9 seemingly very specific in its form) in producing the self are seldom critically examined.

This in turn leads to reductive and limiting conceptions of selfhood (and thus, of the value of persons who cannot narrate themselves in the traditional form).

In this project I consider how the impairment or alteration of narrative structure due to changes in brain function results in different constructions of self rather than the destruction of selfhood that these writers assume. In summary, narratives become markers for “healthy” individuals, and those who are unable to narrate become seen as diseased. However, unlike diseases that can be cured by the biomedical establishment, disorders in narrative are often permanent.32 This is particularly problematic when narrative comes to be seen as a sign of humanity, resulting in those who cannot narrate being viewed as less than human, and certainly therefore not persons or citizens. As a result of this equation of “human” with “narrator,” a lack of narrative can be used to justify deprivation of the rights and respect given to persons.

Anne Basting considers and begins to combat these real-world effects through her

TimeSlips Project, which uses group storytelling to explore possibilities for selfhood in those who are assumed to lack selves and are therefore needlessly excluded from many forms of participation in society. In an article on autobiography and selfhood Basting explains, “understanding how Alzheimer’s is perceived and represented can help interrupt and change the experience of the disease for those who suffer, those who anticipate suffering, and those who care for its victims.”33 Although Basting’s article examines three autobiographies of individuals with early onset Alzheimer’s, she also inadvertently lends support to a case for fictional studies of cognitive disability. Basting explains that although these narratives are told as mostly coherent stories by a single “I”

10 narrator, the nature of the disease makes it impossible for the authors to fully “perform” their experiences in narration, thus necessitating co-authors and other support to help them construct their narratives. To different extents depending on the author, the narrative is “cleansed of any evidence of the disease in the form of the writing itself” and is told in descriptive, non-garbled speech.34 According to Basting, the majority of these autobiographical narratives are traditional in form:

They fight to gather up the fragments of self into a recognizable whole as part of

the battle against the disease. The autobiographies that tell their stories in

chronological form contradict the disease itself and undermine the full potential of

expressing the uniqueness of the ‘‘I’’ of someone with Alzheimer’s. Instead, they

create a reflective ‘‘I’’ who looks back on the course of the disease from a place

where cohesive sentences are, in the real life of the disease, impossible.35

While autobiographies represent an important contribution to disability studies, providing a powerful first-person perspective that is often missing from the discussion, their emphasis on narrative as proof of personhood or of worthiness of participation or consideration reveals just how ingrained the association between narrative and self is in our culture.

Building upon work like Basting’s, my work follows the perspective of disability studies scholars such as Eva Kittay, who argues that our rational capacities are not significant criteria for determining personhood; our capacity for connection with others and characteristics such as the ability to give and receive care are just as important in defining us.36 Dependence, described by disability studies theorists as “integral to the human experience,” is largely absent from narrative theories of self, which privilege the

11 individual construction of coherent narrative.37 This elision promotes an inaccurate view of selfhood as something intentional that should be accomplished by any “normal” human, as indicated by Dennett in my epigram. Making this conflation apparent is an important step in remedying the impossible goals and harmful scripts that influence the way we view those with cognitive disabilities.

This dissertation considers how the impairment or alteration of narrative structure due to changes in brain function results in different constructions of self as opposed to the presumed destruction of selfhood. My exploration expands on work such as that of Paul

John Eakin, who expresses skepticism at the definitive correlation between identity and narrative proposed by Young and Saver and calls for further investigation into the regulation of identity that occurs through the “steady monitoring of narrative practices” for “familiar signs of healthy identity.”38 Any theory of ethics for the treatment and value of people with cognitive disabilities requires an understanding of our definitions of the concept of self and the ways in which those definitions are used to deny autonomy, value, and social justice to particular individuals. Assuming that individuals with cognitive disabilities have no selves can contribute to harmful practices, including stigmatization, depersonalization, and infantilization, that deprive them of dignity and respect and position them as less than human.39

I examine several of the most frequently cited criteria for selfhood—memory, agency, and integrity—as they are disrupted and adapted in the context of cognitive disability. The main body of texts I consider is comprised of a genre I call neurofiction, novels featuring main characters who have cognitive disabilities. The novels highlight the constructed nature of the self through characters that are often seen as one person before

12 their injury or the onset of their disorder and another person after they lose cognitive abilities or skills that allow them to define themselves (and be defined) as “normal” persons. These texts reveal minds that do not produce neurotypical narratives; instead, they allow for new forms of techniques, compensatory mechanisms, and creative frameworks that produce possibilities for alternative narratives and scripts that do not strictly regulate, categorize, and ultimately diminish the selfhood (and value) of people with disabilities.

I suggest that fiction can offer a complementary strategy to examinations of self through autobiography because the fictive mode is ideally suited to proposing hypothetical identities, opening possibilities for considering the operation of unusual narratives. Rather than focusing on the narrative of one particular life as a person comes to terms with their history and explicitly shapes their self-presentation, fiction can more easily question the methods through which self is constructed at all; the constructed nature of the narrative is a primary interpretive concern in the study of fiction. One way in which our approach to fiction differs from our approach to nonfiction, as Dorrit Cohn notes, is that nonfiction contains a referential level of narrative, a documentable stable of events from which the story is constructed, whereas fiction is bound by no such constraint.40 In the case of narrators with cognitive disabilities, novels can explore the narrative construction of self without being limited by faithfulness to diagnostic assessments or to a real person’s life history or self-narrative. Beyond the important presentation of minds that are seldom offered in readable narratives—books that attempt to tell us “what it’s like” to experience the unusual forms of perception and cognition that stem from particular cognitive disabilities—novels in their explicitly constructed nature

13 can highlight the fiction that is all narrative self-making. These goals may be met in autobiography as well, but as readers of fiction we run no risk of misinterpretation or running roughshod over a fictional character’s autonomy by questioning their story of self-construction. Self-making is about storytelling, in the theories under consideration, and fiction offers a forum for explicit questioning of what stories get told and who does the telling.

I argue that people may be selves even when they cannot narrate. Our interpretation of our self may be shaped through language, but our experience of selfhood occurs through encounters with the world: people, places, and things that we interact with make us who we are. This project challenges three assumptions of the narrative identity thesis in particular: that narrative and self must be based on a linear plot that moves from past to present to future, that a self story must be told in terms that are consistently intelligible to others, and that the self narrative must represent an integrated, cohesive unit that shores up the boundaries of the individual, its independent author. I argue that the emphasis on cognition disregards the important contributions to selfhood that stem from the body and its ongoing engagement with its surroundings, including objects, animals, people, and texts. Narrative is not insignificant for selfhood theory, as it does enact a familiar and useful process for self-situating, but it need not be the only means by which people can be considered selves at all.

One of the most important criteria for any definition of self is continuity, the persistence of the self through time. The loss of memory strikes a blow to selfhood that is often seen as obliterating or at least severely compromising the self. For example, Marya

Schechtman writes that individuals who do not conceive of themselves in a linear

14 narrative, “whose sentience is focused always in the present and never extends—either cognitively or affectively—to the past or future,” are not persons.41 In my second chapter

I consider narratives of cognitive disability—specifically stroke and Alzheimer’s disease—that involve drastic memory loss. Using texts that include Umberto Eco’s The

Mysterious Flame of Queen Loana and J. Bernlef’s Out of Mind, I ask how we might revise our limited conception of continuity based on individual memory. In these novels, selfhood is enacted through embodied experience with the world as much as it is through explicit recollection and organization of memory. Despite their cognitive disabilities, the main characters are able to maintain continuity through interaction with familiar objects and environments, like furniture and houses, that help them establish a stability of self that is not reliant on narrative.

For people to be considered selves, they must also be considered agents, a requirement that I argue is based on the intelligibility of the explanations they give for their actions rather than considered evaluation of the actions themselves. The requirement for an intelligible narrative relegates many people with cognitive disabilities to the category of non-agent, and therefore non-person. In my third chapter I consider novels that feature cognitive disabilities often associated with a lack of agency: autism, in Mark

Haddon’s The Curious Incident of the Dog in the Night-Time, and Tourette syndrome, in

Jonathan Lethem’s Motherless Brooklyn. By considering how these authors make use of the detective genre to reconsider agency in terms of space rather than time, I argue that the characters in these novels demonstrate agency through movements and sounds like repetitive touching or groaning. These actions appear unintelligible but actually help the characters manage temporal chaos by engaging them tactilely and spatially in the

15 immediacy of the present. Despite their inability to always narrate that embodiment in the strict requirements put forth by the narrative identity thesis, such as a tightly controlled linear narrative of cause and consequence, these characters position themselves in response to people and surroundings using agentive actions that demonstrate selfhood.

Although contemporary research on the self typically rejects simplistic Cartesian dualism and examines the self as embodied in any number of ways, the “body” of the embodied self is still often limited in its implied characteristics. The fourth chapter considers ways in which new understandings of the embodied self extend beyond the individual person, allowing for adaptations of selfhood that more accurately represent the plasticity of the brain and the flexibility of the self narrative. Philosopher of mind Andy

Clark, for example, believes that cognition goes beyond neural circuitry and must be considered in relation to the mind’s bodily, social, cultural, and technological surroundings. According to Clark and other scholars of extended cognition, objects in our environments that we use to help us think actually become part of our cognitive processes, creating an “extended mind” that changes the way we understand ourselves, altering our sense of location, ability, and mental functioning.42 The texts I use to explore this extended mind include Richard Powers’ The Echo Maker, in which the main character suffers a brain injury as the result of an automobile accident, and Lisa Genova’s

Still Alice, in which a professor with early-onset Alzheimer’s must learn to renegotiate her intellectual and familial identities as she becomes more and more dependent on those around her. By exploring how characters construct their self identities through relationships, texts, and other aspects of their environment, I consider how these novels in

16 conjunction with contemporary studies of the brain might help us better understand the social and environmental nature of the narrative self.

To conclude the project, I consider the language of narrative identity as it is used in the field of narrative medicine. This field performs the important work of training physicians to incorporate tools of listening and analysis from the humanities into the scientific and medical frameworks of healthcare. However, practitioners of narrative medicine frequently make use of restricting descriptions of selfhood defined primarily through narrative. I argue that this tragically limits the ability of medicine to understand and care appropriately for those who have difficulty with narrative and communication.

An incorporation of disability studies perspectives and a de-emphasis of narrative expression as a stringent requirement will help create stronger theories of identity that more adequately account for the multitude of ways for enacting selfhood. This revision of the selfhood theories utilized by narrative medicine would promote a vision of self that is expansive rather than exclusive when considering who should count as a person worthy of dignity, rights, and respect.

1 Daniel Dennett, Consciousness Explained (New York: Back Bay Books, 1991), 416. 2 In contemporary discourse, the terms “selfhood” and “personhood” are often used interchangeably, as they will be in this dissertation, though more frequently I will refer to “self,” the term more commonly used in popular and academic literature to discuss the construction of identity. Although “personhood” is used more frequently in philosophical parlance to denote an ethical evaluation (“persons” are beings with the rights of citizenship, for example), I argue that the refusal to acknowledge selfhood operates just as the denial of personhood does, stripping an individual of value by denying equal rights of membership in society. 3 Nikolas Rose, Inventing our Selves: Psychology, Power, and Personhood (Cambridge, UK: Cambridge U. Press, 1996), 3.

4 Neisser outlines ecological, interpersonal, extended, private, and conceptual selves. Strawson points out no fewer than twenty-one distinct concepts of self (Dan Zahavi, Subjectivity and Selfhood: Investigating the First-Person Perspective, Cambridge, MIT Press, 2005, 103.) 5 Sean O’Connell, Outspeak: Narrating Identities that Matter (Albany: SUNY Press, 2001), 99- 100. 6 Jerome Bruner, “Life as Narrative,” Social Research 54.1 (1987): 11-32. 7 Dan McAdams, “Identity and the Life Story,” in Autobiographical Memory and the Construction of a Narrative Self: Developmental and Cultural Perspectives, edited by Robyn Fivush and C. Haden (Hillsdale, NJ: Erlbaum, 2003), 202. 8Alasdair MacIntyre, After Virtue: A Study in Moral Theory, 3rd ed. (Notre Dame, IN: Notre Dame University Press, 2007), 203. 9 Marya Schechtman, The Constitution of Selves (Ithaca, NY: Cornell University Press, 1996), 96. 10 Ibid., 94. 11 Gary D. Fireman, Ted E. McVay and Owen J. Flanagan, eds., Narrative and Consciousness: Literature, Psychology, and the Brain, (Oxford University Press , 2002), 5. 12 Daniel Dennett, Consciousness Explained (New York: Back Bay Books, 1991), 410. 13 Daniel D. Hutto, Narrative and Understanding Persons. (Cambridge University Press, 2007), 1. 14 Ibid. 15 Anthony Paul Kerby, Narrative and the Self (Bloomington: Indiana UP, 1991), 56. 16 Kim Worthington, Self As Narrative: Subjectivity and Community in Contemporary Fiction (Oxford University Press, USA, 1996), 166. 17 E. Frank Fitch, “Moral Philosophy, Disability, and Inclusive Education,” Philosophical Studies in Education 40 (2009): 169. 18 Roy Porter, ed., Rewriting the Self: Histories from the Renaissance to the Present (London: Routledge, 1997), 4-5. 19 Ibid., 1. 20 Rose, Inventing Our Selves, 17. 21 Ibid. 22 McAdams, “Identity and the Life Story,” 196. 23 Lindsay Holmgren et al., “Terminology and Praxis: Clarifying the Scope of Narrative in Medicine,” Literature and Medicine 29.2 (Fall 2011): 253. 24 Cited in Shlomith Rimmon-Kenan, “The Story of ‘I’: Illness and Narrative Identity,” Narrative 10.1 (2002): 49. 25 Kay Young and Jeffrey L. Saver. "The Neurology of Narrative." SubStance 94/95 (2001). 26 Ibid., 78. 27 Ibid. 28 Ibid., 79. 29 Jerome Bruner, "Self-Making Narratives," in Autobiographical Memory and the Construction of a Narrative Self: Developmental and Cultural Perspectives, ed. Robyn Fivush and C. Haden (Hillsdale, NJ: Erlbaum, 2003), 223. 30 Bruner, “Life as Narrative,” 13. 31 Jesse Ballenger, Self, Senility, and Alzheimer's Disease in Modern America: A History (The Johns Hopkins University Press, 2006), 3. 32 In some forms, the practices of narrative medicine may be seen as attempting to “cure” broken

or absent narratives, a point I will address in my conclusion. 33 Anne Basting, "Looking Back from Loss: Views of the Self in Alzheimer's Disease." Journal of Aging Studies 17.1 (2003): 88. 34 Ibid., 92. 35 Ibid., 98. 36 Eva Kittay, Love's Labor: Essays on Women, Equality, and Dependency, (New York: Routledge, 1999). 37 E. Frank Fitch, “Moral Philosophy, Disability, and Inclusive Education,” Philosophical Studies in Education 40 (2009): 167. 38 Paul John Eakin, How Our Lives Become Stories: Making Selves (Cornell University Press, 1999), 141. 39 Tom Kitwood, Dementia Reconsidered: The Person Comes First (Buckingham: Open University Press, 1997), 52. 40 Dorrit Cohn, “Signposts of Fictionality: A Narratological Perspective,” Poetics Today 11.4 (Winter 1990): 778. 41 Marya Schechtman, The Constitution of Selves (Cornell: Cornell University Press, 1996), 101. 42 Andy Clark, Natural-Born Cyborgs: Minds, Technologies, and the Future of Human Intelligence (New York: Oxford UP, 2003), 34.

Chapter 2: Non-cognitive Continuity: Bodily Memory, Amnesia, and Alzheimer’s Disease

“Bereft of memory, a person becomes the prisoner of an illusory existence; falling out of time he is unable to seize his own link with the outside world—in other words he is doomed to madness.” —Andrei Tarkovsky1

“Every memory we have is, finally, of ourselves. If the memory of an experience is flawed, there is a rift in the continuity of self.” —Don DeLillo2

Is memory a requirement for selfhood? According to narrative theories of the self, the answer is unequivocally yes; it is impossible for a person to construct a life story without the ability to recall that life. In these theories, the memory criterion for selfhood is dependent upon the idea that one must use the memory to “build” a self, a precondition that requires conscious narration of one’s past in order to unify past memories with the narrator’s present self. This idea is rooted in the philosophical conception of the modern individual, perhaps most famously exemplified in John Locke’s Essay Concerning

Human Understanding, where he defines a person as “a thinking intelligent being, that has reason and reflection, and can consider itself as itself, the same thinking thing, in different times and places.”3 He further goes on to write that the identity of a person reaches only as far backwards as they can consciously remember. The close relationship of identity and memory has also been repeatedly taken up through and interrogated by the genre of the novel, the history of which Ian Watt’s The Rise of the Novel connects to

Locke’s philosophical tenets. As Watt notes, “many novelists, from Sterne to Proust,

20 have made their subject the exploration of the personality as it is defined in the interpenetration of its past and present self-awareness.”4 The novel emphasizes the construction of consciousness through time, and explores various means by which both cultural and individual memories compose identity.

Although novels both reflect and shape cultural constructions of memory and self, often providing important challenges to unquestioned assumptions, most contemporary philosophical, political, and public understandings of the self have more rigidly adhered to traditional definitions such as those noted above by Locke, largely ignoring the potential contribution of literature on these matters. Many novels written in traditional formats contribute to social discourses that enforce particular norms of self, but the extensive history of narrative innovation and experimentation in the genre provides a necessary counterpoint to narrative theories of selfhood that rely on a notion of the self as an entirely cognitive and linguistic project.5

The relationship of conscious or explicit memory to selfhood is a particularly exigent question for scholars of disability studies, as memory loss in various forms often leads to the stigmatization or isolation of people who have cognitive disabilities such as acquired brain injuries, dementia, or other amnesia-inducing disorders of the brain.

Because they often result in difficulties of both memory and narrative, the cognitive deficits resulting from brain trauma or Alzheimer’s disease may make the coherent story of the narrative self impossible. As neurologist Antonio Damasio explains, “When the loss of memory for past events is marked enough to compromise autobiographical records, the autobiographical self is gradually extinguished,”6 a prospect philosopher

Marya Schechtman finds “horrifying and depressing.”7 Without the ability to narrate a

21 coherent story of their memories, people with cognitive disabilities such as Alzheimer’s disease are often described by caregivers and even family members as empty shells, ghosts of their former selves, or even the living dead, a collection of nightmarish stereotypes that leads to degrading treatment with little recourse to social or legal remedies.

In this chapter I argue that contemporary theories of narrative selfhood are unnecessarily restrictive in their definitions of what constitutes a self. In particular, I would like to reconsider the criterion of continuity as narrative theories of self define it.

Building on a rich tradition of narrative complexity, recent novels provide the opportunity to consider non-narrative bases for self-continuity that are not eradicated with the loss of conscious memory. Two novels whose narrators have suffered severe memory loss, Umberto Eco’s The Mysterious Flame of Queen Loana (2004)8 and J.

Bernlef’s Out of Mind (1984),9 challenge the lingering Cartesian dualism of purely cognitive notions of selfhood, revising accounts of memory that require specific types of mental functioning to connect one to one’s history. Both novels engage with the late 20th and early 21st century multidisciplinary fascination with the brain, incorporating research on memory, stroke, and dementia into their storylines. By working through emergent theories of brain function and consciousness in the complex scenarios of lived experience, the novels offer a challenge to narrative-based definitions of self by demonstrating forms of self-continuity that are possible in the face of memory loss.

Juxtaposing research from cognitive science and the philosophy of mind with literary readings, I demonstrate how these novels flesh out nuances of selfhood that are clearly though tentatively gestured towards by theories of the brain. After elaborating on

22 the connections between temporality, selfhood, and fiction, my investigation will focus on how the novels offer alternative forms of continuity through embodied experiences, including implicit memories, habits, and object interactions. I contend that the characters in these novels reveal selfhood through embodied rather than linguistic experiences, demonstrating alternatives to explicit memory that are becoming increasingly important as more people are diagnosed with amnesia-inducing cognitive disabilities and face living in a society that has little understanding of these disorders or how best to respond to them.

Memory, Disability, and The Novel

In Western society, the fear of memory loss has come to be closely tied to anxieties about identity loss. Not only is memory increasingly associated with intelligence, but new medical technologies enable longer life spans and increase the likelihood that we will survive when we experience memory-damaging events such as stroke, dementia, or traumatic brain injury. As the difficulties of maintaining a stable memory-based selfhood have been intensified by cultural conditions of spatial and temporal disconnection, 10 the stigmatized image of senility, as Ballenger notes, “has been one of the most prevalent stereotypes for managing anxiety about the coherence, stability, and moral agency of the self.”11

In order to protect us from this “temporal precariousness of the self,”12 we rely on narratives. A self-narrative protects one from the insecurity of living only in the present, surrounded by a past that no longer exists and an unpredictable future. We stabilize ourselves against the flow of “real time” through our memories, and “we reorganize and

23 reconstruct these memories within the continuity of a life narrative as a way of maintaining a sense of self-continuity that in the real order does not exist.”13

Autobiographical memories, memories of our personal past experiences, are noted in theories of narrative identity as essential for constructing meaningful life narratives, which are in turn understood as necessary in order to construct and maintain selfhood.14

These memories give a person the subjective experience of living through recall of events that happened to her (as opposed to facts or other information learned but not necessarily experienced).

Contemporary theories of narrative identity often rely on reductive assumptions about narrative, defining it as a linear sequence of events and taking little account of the myriad possibilities for self-exploration available in literary fiction. According to these theories, the continuity required for narrative selfhood is achieved through the construction of a linear narrative that explains a person’s memories in relation to one another and his past in relation to his present and future. Schechtman, for example, believes that "constituting an identity requires that an individual conceive of his life as having the form and the logic of a story—more specifically, the story of a person's life— where ‘story’ is understood as conventional, linear narrative.”15 In this view, self- conceptions that do not follow traditional form and logic are therefore considered inadequate for personhood. More specifically, continuity of identity over time is reliant on this basic conception of narrative; individuals understand themselves as “persisting subjects” through a narrative of past experiences that defines the present and future self.16

Narrative, in the theories of self under consideration, is responsible for the sense of continuity formed through memory; self-narrative is defined as “the individual’s

24 account of the relationships among self-relevant events across time. In developing a self- narrative the individual attempts to establish coherent connections among life events.”17

Theorists emphasize the importance of “directionality” of narrative, through which events are “seen to move in an orderly way across time.” Memory provides a sense of temporal progression as well as a basis for connecting temporally disparate moments.18 Under the narrative identity thesis, then, explicit memories and the narrated connections ordering them are the building blocks of the continuous self.19 Despite changes in personality or identity, people usually understand themselves to be one constant entity from childhood through old age. This self can be narrated through a linear story that demonstrates the significance of memories of past events for present identity. The narrative self is a continuous self because it is a remembering self, where “remembering” involves conscious reflection on the events of one’s past.

The understanding of narrative assumed in these theories, however, does not correspond to the “variable and complex” selves of real people, whose lives cannot always be neatly condensed into a well-ordered tale, as philosopher John Christman notes: “Theorists who utilize narrativity as a condition of selves often write as if

‘narrative’ refers to those canonical story structures, such as tragedies, comedies, satires, and the like, familiar from the world of fiction….we are not all fortunate enough to live lives that are the stuff of legends.”20 A narrative requirement for selfhood is normative, reducing the self to a strictly delineated concept that many actual, lived selves cannot meet. Narrativity cannot be an all-encompassing condition for the unification of self over time, according to Christman. Noting that accounts of narrative identity rely heavily on a pre-theoretic understanding of narrative that reduces it to standard linear forms,

Christman outlines three sets of connections between events in a sequence that would define that sequence as a narrative (as the term is used by theorists of narrative selfhood).

These connections include relations of causality, in which earlier events in a linear chain explain later ones; relations of function or teleology, where events are explained in terms of their contribution to an overarching telos or final purpose; and relations of theme, in which events in a narrative may suggest some general idea or moral. None of these types of connections are sufficient descriptions of what forms continuity of self as they do not necessarily correspond with real lives. Connections of causality are not adequate cause for requiring a condition of narrativity because the events of a life are not necessarily causally connected; not only may there be unconnected events occurring in different areas and times of a person’s life, the self-interpretive activity of narrative is partial and cannot account for all events in a person’s life (many of which are quickly forgotten).

Furthermore, it is very rare for a person’s self-narrative to have a single telos (although someone may explain all events in their life as culminating in a single purpose, this is not a plausible condition for unity for most people). The third type of narrative connection, thematic unity, may be used to describe many narratives and many lives but is not an adequate criterion for unity of self, as almost any series of events may be coalesced under a general theme or have a unifying idea imposed upon them.21

Under this view, narrative becomes “a placeholder for whatever organizing principle describes the pattern of experience and action produced by the person and interpreted by her with the use of socially produced and embedded rules of meaning.22

Although Christman seems to base this “organizing principle” in linguistic and cognitive self-reflection, he also claims that such reflection need not have one particular form or

26 other. He does not elaborate on other potential forms of interpretation, but philosophers such as Roderick Chisholm suggest that bodily awareness should be taken seriously as a form of introspection, following Hume’s definition of the self as a “bundle or collection of different perceptions.”23 For people with cognitive disabilities who cannot form cognitively constructed narratives, the body becomes an especially important basis for continuity that is non-cognitive in nature. The dominant conceptions of memory and narrative frame self-continuity as a cognitive achievement, leaving little room for understandings of selfhood that stem from the disabled body or the disabled brain.

Narrative, when understood in the basic sense used by these theories, attempts to neutralize the disruptive force of disability in a person’s life by treating the disability as a momentary interruption to be smoothed over. In disability studies, an understanding of the “medical model” for responding to disability neatly corresponds with this basic plot structure. Under this model, an individual who becomes disabled must find a way to cure the disorder or resolve their deficits through other means. This emphasis on cure is reflected in the basic structure of narrative plots, in which a disruption is eventually resolved through a conclusion that “fixes” the problem, repairing the narrative. Narratives of disability are often influenced by this cure-centric perspective. In these stories, narrative closure allows for a satisfactory containment of disability, a protection against our own anxieties about autonomy. The narrative of disability, for example, is often concluded with a cure or repair in the form of: a) a newly healthy body, b) a “supercrip” performance in which the individual has “overcome” his disability, or c) the death or other removal of the disabled person from the story.24 Disability scholar Lennard Davis, arguing that “the novel as a form relies on cure as a narrative technique,” claims that the

27 genre of the novel revolves around a narrative arc based on a requirement of normativity:

“the situation had been normal, it became abnormal, and by the end of the novel, the normality, or some variant on it, was restored.”25 While this plot structure indeed represents a large percentage of novels which adhere to traditional forms, other novels, such as those I discuss here, present a more complex challenge to this normative emphasis on narrative closure through erasure of disability plots. They parallel the concerns of contemporary disability studies arguments, which demonstrate that there is no pre-determined “normal” narrative of a life and that teleological models based on eradicating disability are harmful and strengthen negative stereotypes about disability in our society.

The novels discussed in this dissertation challenge the normative emphasis on narrative closure through erasure of disability, demonstrating the importance of literature to debates about the self. In contrast to the basic view of narrative commonly espoused in selfhood theories, novels have the ability “to deal specifically with the impossibilities, the paradoxes and problems, of our human efforts to order experience.”26 Disorders of memory are particularly disruptive of strictly linear narratives. In the novels under consideration in this chapter, the central narrators have experienced severe memory loss and can no longer create the expected linear narratives to form their self-identities.

Fiction offers alternative strategies for these explorations of self through orderly stories because of its environment of hypotheticals that provides opportunities for the operation of unusual narratives. In the case of narrators with disorders of memory, novels allow imaginative access to minds that would otherwise be difficult to access, narratives that might not otherwise be narrated due to our restrictive definitions of selfhood. Although

28 autobiography has also been an important genre for studies of cognitive disability, the nature of the disability often makes it impossible for the authors to fully “perform” their experiences in narration, thus necessitating co-authors and other support to help them construct their narratives. As these novels show, fiction is the realm of the impossible, rendering otherwise unattainable representations of interiority and selfhood in vivid complexity, representing subjective sensations and negotiations of cultural norms from a first-person perspective.

In these novels of damaged memories and disrupted narratives, the process of fiction becomes inseparable from the process of self-making. Basic narrative structures of both self-narrative and novel-narrative attempt, as outlined above in Davis’s account, to impose continuity and resolution of disruptions. This formal integrity is no longer possible, however, in the narrative of memory loss. Although non-normative elements such as resistance of closure and shifting temporal frames do characterize Eco and

Bernlef’s novels, I claim that these elements do not eliminate the possibility of selfhood but instead enact the tension that is inherent in any self-telling: while we may constantly struggle towards a continuity of self, life is not a smooth, linear narrative.

Embodied Memory in The Mysterious Flame of Queen Loana

“My name is Arthur Gordon Pym.”

“That isn’t your name.”

[….]

“Call me…Ishmael?”

“Your name is not Ishmael. Try harder.”27

If we are what we remember, Giambattista “Yambo” Bodoni has been reduced to a patchwork of literary names and phrases. Stripped of his personal history by a brain damaging stroke, this 59-year-old narrator of Umberto Eco’s The Mysterious Flame of

Queen Loana (2004) can only name himself and make meaning of events in his life through fragments of the many books he has read in his career as an antiquarian book dealer. As his neurologist Gratarolo explains, Yambo has retrograde amnesia. He has lost his episodic or autobiographical memory, which consists of personal memories of specific events of one’s life and, for Gratarolo, “establishes a link between who we are today and who we have been.”28

In The Mysterious Flame of Queen Loana, Yambo attempts to recover his former sense of self after his stroke causes him to forget all personal memories formed before the incident. His first attempts at retrieving his life narrative involve questioning his family and friends and reading the newspaper, but he quickly realizes that the stories he pieces together from these external sources are hollow and artificial. For example, after his wife tells him that he has cheated on her in the past, he imagines the affairs he might have had.

This forced invention is useless in understanding himself, he thinks, as he might as well be summarizing the plot of a movie or a romance novel, a story that everyone knows but without personal meaning for him.29 His doctor tells him that amnesiacs often invent false histories, merely to “have the sensation of remembering.”30 Yambo tries to make his life conform to the external narratives of newspapers or that family tells him, but he feels no emotional response for these “memories,” which only affect him as the story of another person might. Although he is able to enact the process of memory by attempting to

30 connect pieces of his history that he reads or others tell to him, the lack of a personal connection to these narratives leaves him feeling alienated from himself.

In an attempt to spark his memory through the narratives of his childhood, Yambo travels to the country home in Solara where he grew up and begins examining all of the documents and books he can find in storage, a salvage operation to which more than a third of the novel is devoted. He discovers stories of history and fantasy in French and

Italian magazines, dusty gramophone records, Fascist propaganda, his old schoolbooks, science fiction novels, vinyl records, American comic books, sheet music, colorful magazines, and advertisements in several different languages. As he reads these documents, he learns more about the many texts he may have read as a child, but he does not remember the boy who read them:

I felt more confused than I had when I arrived. At least before I remembered

nothing, absolute zero, Now, I still could not remember, but I had learned too

much. Who had I been? The Yambo shaped by school and by the kind of ‘public

education’ carried out through Fascist architecture, propaganda postcards, street

posters, and songs, the Yambo of Salgari and Verne, of Captain Satan, of the

savagery of The Illustrated Journal of Voyages and Adventures, of the crimes of

Rocambole…Or all of them?31

Although he has re-read so many documents from his childhood, Yambo realizes that without the filter of his personal memory he cannot recreate his past: “it was a figment, a hypothesis formed at the age of sixty about what I could have thought at ten.”32

Yambo’s stroke completely disrupts his personal narrative by isolating him from his past. His inability to know himself except through a mediated and detached

31 construction is comparable to research on trauma survivors who are unable to access their past experiences through language. Descriptions of traumatic events without affective registers are described as external memories by anthropologist Roberta Culbertson, who explains that these memories are “socially constructed, skating along the surface of words and engaging the intellect—not the body’s reexperience, which because it is a recapitulation of the past, cannot be spoken about or related at the moment, just as it could not be originally. It is not known in words, but in the body.”33 Yambo’s fragmented self is similarly superficial after his stroke. His history feels external to him, and he cannot incorporate the many stories he reads into his own self-constituting narrative. For

Yambo, as it does for many trauma victims and sufferers of severe illness, the disruption of memory produces a drive toward narrative, a desire to bridge the disruptive gap and reestablish continuity.

The missing component of Yambo’s memory seems to involve a phenomenological perspective that narrative alone cannot recreate.34 He is distanced from his own experience largely because the stories he learns about his past trigger no emotional responses beyond those of a detached observer; he cannot recall his own first- person experiences of his emotional history. As Gratorolo tells him, without episodic memory “when we say I, we’re referring only to what we’re feeling now, not to what we felt before.”35 Yambo mourns his unfamiliar state, saying “I don’t have feelings, I only have memorable sayings”36 and after seeing his grandchildren and experiencing only detachment he cries and tells us “whatever feelings I once had were no longer mine.”37

Comparing himself to a cat with an injured nose who can no longer recognize things

32 because it depends on its sense of smell,38 Yambo seems at a loss to find a meaningful connection to his past without memories that have a physical register.

Although he continues to search for the only form of memory he knows, explicit memory, the reader can see that Yambo is in fact deeply connected to his past self through his body, which is rarely recognized as contributing to selfhood. As he recovers from his stroke, he seems to gain respite from the anxiety of his search for self as he immerses himself in the world around him, describing the qualia of his sensory explorations such as the “exquisite sensation” of squeezing toothpaste. For example, he tells us: "I spent the afternoon testing things, feeling the pressure of my hand on a cognac glass, watching how the coffee rises in the coffee-maker, tasting two varieties of honey and three kinds of marmalade (I like apricot best), rubbing the living room curtains, squeezing a lemon, plunging my hands into a sack of semolina." The experiences of the body in the world do not require interpretation or reflection to be self-constituting.

Scientist Pia Kontos argues that selfhood “emanates from the body’s power of natural expression, manifesting in the actual movements of the body.”39 In her study of a care facility, Kontos observes what she sees as signs of self in the residents:

when Dora held Bertha’s hand and sang her a lullaby to comfort her, when

Florence would peel for herself a boiled egg at breakfast, when Molly would

reach behind her neck to pull from beneath her bib a string of pearls she wore so

that they could be seen, or when Sam clapped his hands and tapped his feet in

excitement as music would play – they would intend a certain outcome by their

actions and the enabling actions were spontaneously distributed amongst the

appropriate parts of their bodies…The movements of their bodies were perfectly

suited to the circumstances, disclosing a practical competence in their engagement

with the world.

The unthinking movements of the residents reveal “a unity in their directedness towards the world....that, at a fundamental level, allows them to grasp external space and engage in mutuality with others.”40 Embodied memory forms a basis of continuity with our pasts through our lived experience. The past is maintained in the body through actions performed unconsciously such as gesturing, specific processes (e.g. riding a bike) or other habits. Through embodiment people with severe cognitive disorders such as dementia remain engaged with the world rather than becoming the empty shell of so many descriptions of Alzheimer’s. In fact, embodied memories can be described as a more intense engagement than events consciously remembered, as psychologist Thomas

Fuchs asserts:

autobiographic memory only represents the past as the past. The memory of the

body, on the contrary, mediates the real, living presence of the past. Thus it also

the essential basis of the self…even when dementia deprives a person of all

explicit recollections, she still retains her bodily memory: the history of her life

remains present in the familiar sights, smells, touching and handlings of things,

even when she is no more capable to account for the origin of this familiarity and

to tell her history. Her senses become carriers of personal continuity, of a more

felt than known recollection, a silent, but faithful memory—the tacit, but enduring

memory of the body.41

If embodied memories can sustain continuity with the past, then there is no need to eliminate selfhood when narrative is absent: we cannot forget ourselves.

Embodied selfhood reveals a fundamental continuity of self that is complemented by recent memory research in the cognitive sciences. Discussing Alzheimer’s disease,

Daniel Schachter writes that “even in the most profound cases of amnesia, the past never fully relinquishes its grasp on the present. When explicit memory is destroyed, the past continues to affect the present through subtle influences that operate outside of awareness.”42 Schachter, who first developed the terms “implicit memory” and “explicit memory” with colleague Peter Graf, has repeatedly seen that patients with amnesia have the ability to learn and their decision making is affected by their past experiences even when they do not consciously remember those experiences. By using their understanding of implicit memories, memories stored and used without our conscious awareness,

Schachter and his colleagues were able to teach complex computer vocabulary to a patient with profound amnesia, helping her to gain employment.43

Implicit memories play an important role in our sense of self: they affect our ways of walking, talking, thinking, holding our bodies, perceiving, and experiencing emotion.44

Although many psychologists “minimize the importance of the unconscious components of the mind in favor of the notion of a self as an active agent in the control of mental states and behavior,” the self cannot be separated from particular parts of experience; it is composed of both explicit and implicit memory. 45 When describing his mother, who has

Alzheimer’s disease and cannot consciously recall many experiences but can play flawless tunes on her accordion, LeDoux states that implicit memory is reflected “in the way we act more than in what we consciously know.”46

Yambo Bodoni reveals continuity of self through both the primordial being-in- the-world that Kontos and Fuchs identify and the implicit memory of LeDoux and

Schachter’s research. For example, Yambo says that “while singing without thinking I was actually myself for the duration of my memory, which in that case was what you might call throat memory, with the before and afters linked together, and I was the complete song, and every time I began it my vocal cords were already preparing to vibrate the sounds to come.”47 Somatic rather than cognitive response to the world allows him to become “himself” as his body pre-reflectively remembers former experiences of singing. In a descriptive scene of outdoor defecation in his vineyard, Yambo extends his bodily memory even further, explaining that the “ancient satisfaction” he is feeling seems to summon his past: “I was in that instant reuniting with my old, forgotten self, undergoing the first experience capable of merging with countless previous experiences, even those from when I did my business in the vineyards as a boy.”48 His body remembers and reenacts previous experiences despite the fact that he has no conscious recollection of those events.

Yambo’s body brings his past alive in a way that his explicit memories cannot.

Although he does not recover his memory in his paper excavations at Solara, from time to time he is struck by a sensation he names “the mysterious flame of Queen Loana,” a phrase he later discovers is the title of a childhood story he read and forgot. Significantly, the mysterious flame guarded by the story’s queen grants immortality, just as Yambo’s flame grants him a selfhood that is connected through past, present, and future.49

Responding bodily to his environment in such a way that invokes his past habits and beliefs and also positions him for future action (as when his vocal cords prepare to vibrate the sounds to come), Yambo demonstrates that his stroke did not result in a death of self. The mysterious flames he experiences seem to be a visceral response to familiar

36 objects; he describes them alternately as tachycardia, a flutter in his chest, or a tickling of the pylorus (which is the connection between the stomach and small intestines). The flames provide additional information about the personal importance of a particular object as they vary in frequency and intensity, occurring in crescendos, bursts, or “slight twinges.” At times Yambo is able to hypothesize about the significance of the event that produces a mysterious flame, such as when he understands that one particular tremor means the story he has found provided his first vision of death as a child.50

Other parts of Yambo’s body remember as well. When he easily provides his signature after awaking from the stroke Gratarolo tells him “your head doesn’t know who you are, but your hand does.”51 Yambo later describes turning to a page in a book “as if my fingers knew what they would find there,”52 and a song he sings without knowing why makes his eyes tear up.53 When hearing the sound of a car in Solara, he feels “a hint of tachycardia” and says, “It’s Pipetto!” but tells us “it was just my lips that remembered…something in me knew, but that something was simmering slyly in the injured region of my brain.”54 And in a particularly resonant passage, he is physically impacted by the sound effects in old comic books he finds:

that crack [of the rifle] must somehow have imprinted itself in the most secret

recesses of those frontal lobes I was trying to unhinge, because I still felt those

sounds as an exotic promise, a finger pointing me toward a different

world…Noises. I saw all of them, paging through comic after comic…Among the

various noises, sffft came to mind, and my forehead beaded with sweat. I looked

at my hands: they were shaking. Why? Where had I read that sound? Or perhaps it

was the only one I had not read, but heard?55

It is in the final section of the novel that Yambo is able to answer his question, discovering that the sound that produced the shaking and sweating was indeed associated with a formative and traumatic event in his life: as a child he assisted eight men in escaping German capture. During the event two German soldiers were killed, after which his friend Gragnolo, who planned the escape, committed suicide by cutting his own throat. “Sffft” is the sound that thereafter haunts Yambo’s dreams as the sound of a throat being slit.

Through these embodied responses to evocative texts which Yambo closely associates with his childhood identity formation, we are able to add implicit memory to the descriptions of embodied selfhood. Unlike the primordial being in the world, which is unlearned, and the repetition of socially dictated protocols that lead to habit, Yambo’s mysterious flames reflect his learned bodily responses to individually occurring significant events. His flames, which are physically manifest through shaking, tachycardia, stomach pain, sweating, and the like, represent memories that are both irretrievable and unavoidable. Even when his mind can no longer recall the memories that generated such emotion as a child, his body remembers and responds, demonstrating that he is still himself.

By taking advantage of the narrative play that the form of the novel allows, the last pages of Eco’s book enact the instability of memory and the elusiveness of a selfhood constructed through explicit memories. In this section, the narrator has undergone another stroke and narrates his experience from inside what appears to be a coma. Although during the consciously narrated part of his story Yambo is determined to arrange his past in a neat narrative ordering, retracing “year by year” his formative experiences, in the

38 final section he realizes that he cannot force his memories to line up for him. He must wait and experience them in the order they come to him, “following their own logic.”56

He finds this freedom from control liberating, explaining, “Now I do not live in the stream of time. I am, blessedly, in the eternal present…I can move from one memory to the other, and I experience each as the hic et nunc.”57 He does still have a sense of chronology, and can recognize different periods of his life as he regains some memory, but now he “can travel through them in both directions, having done away with time’s arrow—the advantage is that I can now relive it all, no longer encumbered by any forward or backward, in a circle that could last for geological ages.”58 As characters from the books he has been reading parade before him, igniting many flames of recognition as well as memories of childhood experiences, Yambo eagerly awaits the memory of Lila, an unrequited crush from his teenage years.

In keeping with his disorderly consciousness of unordered “paper memory” (as he calls his memory based on books rather than experiences), however, the narrative resists a final closure. The last flame of book is indistinguishable from his body, from himself:

“I do not know whether it is the mysterious flame of Queen Loana that is burning in my crumpled-parchment lobes…or whether it is I who am trying to drive my nerves to the point of unbearable exertion.”59 He feels something in his brain getting ready to explode, and at the moment of epiphany when he will finally see Lila, his vision is obscured by a fog and in the last line of the novel he writes, “Why is the sun turning black?” Although the obscured sun has been read as Yambo’s death by some readers of the novel, its meaning is unclear. Both the text of the self and the text of the novel remain open, demonstrating the impossibility of a continuous and structured narrative based on

39 memory loss.

Many reviewers of The Mysterious Flame of Queen Loana found the book unsatisfactory, citing its lack of progress and rambling narrative collections of other texts.

For example, a San Francisco Chronicle review states that Eco does not have the “knack for narrative” of authors like Swift, Voltaire, Joyce, and Borges,60 while another review described Yambo as having insufficient character to give shape to the narrative.61 In his

New York Times review, Thomas Mallon challenges the book’s status as a novel, writing

“it must be said: the plot thins.” He identifies a few “standout” moments in the book which “provide intermittent propulsion, but the novel mostly progresses from literary notebook to Everyboy's memoir, full of marbles and tops and harmless digressions.”62

These reviewers do not seem to recognize that the form of Eco’s novel is just as significant to its interpretation as its content. The disorderly narrative of the novel, full of lengthy descriptions and little progress or plot, represents the disorderly narrative of

Yambo’s selfhood. The disruption of an expected plotline as well as the refusal to provide readability and closure deemphasize the failing narrative formation of selfhood and draw our attention to Yambo’s bodily manifestations. A narrative based on memory maintains a comprehensible, linear framework; while life stories may not be exactly placed into specific date order, they are generally sorted accurately according to major periods in one’s life (for example early childhood or the teenage years) and kept separate in the life narrative from the here and now. Yambo, on the other hand, has no linear past against which to position his present identity, making a narrative of progress impossible; if he cannot order his memory he cannot order the events of his life to move towards any specific narrative goal. While he constantly pushes himself to recover a smooth, linear

40 narrative, the breakdown of chronology and profusion of cultural symbols represents a chaotic mass of mini-narratives and independent sensations that more accurately reflects his loss of memory. The emphasis on coherence, both in fiction and in self-narratives, overlooks the value in the non-narratable or anti-narrative elements that may also serve to communicate experience or manifest selfhood. Narrative coherence is only one method of providing continuity; embodied memory is equally important to recognize as a basis for selfhood.

Self-Continuity through Object Interaction in Out of Mind

The unstable nature of the human body can complicate our understanding of embodied selfhood, which seems to require a consistent physical response to the environment even when explicit memory is impossible. Maarten Klein, the 71-year-old narrator of J. Bernlef’s novel Out of Mind, experiences his rapidly progressing dementia as a betrayal of his body: he is excluded from the temporal world he knows as he grows increasingly confused about the day of the week and the time of day, misinterpreting environmental cues such as the gray light of dawn, confusing it for the dusk of evening.

Entire stretches of time disappear as his memories come and go, at times making him believe he is reliving his past. When an assistant asks how he is feeling, he attempts to explain: “Everything happens in jolts and jerks. There is no flowing movement any longer, as there used to be. Nowhere. The day is full of cracks and holes. So to speak.”63

Although he attempts to narrate his disorderly experience, moving the reader through his mental time travel, he often immediately forgets what he has been doing or thinking shortly afterward, creating the disjunctive experience of a day full of “cracks and holes.”

The project of forming continuity of self through embodied memory is complicated for Maarten, who has what appears to be rapid-onset Alzheimer’s disease or a similar form of dementia. The progressive decline of the body through Alzheimer’s disease often entails a loss of sensation, difficulty with motor skills, disrupted autonomic functions such as hunger or thirst, and many other physical manifestations of the disrupted brain and nervous system. Damage to memory also involves damage to chronology, as neurologist Antonio Damasio explains: “people who sustain damage to regions of the brain involved in learning and recalling new facts develop major disturbances in their ability to place past events in the correct epoch and sequence.

Moreover, these amnesiacs lose the ability to estimate the passage of time accurately at the scale of hours, months, years and decades,” suggesting that the processing of time and memory must share common neurological pathways. 64 Damasio describes the sense of time disrupted in brain disorders like Alzheimer’s as “mind time,” which refers to the experience of the passage of time and organization of chronology (for example, the ability of time to feel fast or slow is an aspect of “mind time”).65 This disruption of time is apparent in both the form and content of Maarten’s narrative as he becomes increasingly unable to place his memories into a linear sense of time. I argue that if

Maarten’s failing memory disrupts his “mind time,” one potential avenue of reconnection with his past is to use his relationships with external objects to replace the narrative continuity that his disordered temporality can no longer achieve.

Objects have the potential to stand in for our pasts: “personal possessions can act as the repositories of memory, standing as a tangible record of personal achievements, successes, relationships with others and shared biographies with others.”66 Familiar,

42 everyday objects like furniture are particularly important in their role as a record of memory, as Mihaly Csikszentmihalyi and Eugene Rochberg-Halton describe in The

Meaning of Things: Domestic Symbols and the Self. After interviewing eighty-two families about their most cherished household objects and the meanings associated with them, the researchers observed that chairs, sofas, and tables were most often mentioned as being special to the interviewees. Although younger respondents emphasized the usefulness of furniture, older respondents emphasized connections with the past: memories associated with buying, making or using the furniture, ties to important relationships or events that involved the furniture. Additionally, older respondents frequently described a concern with the future, “about the object becoming a link with the younger generations; a sign representing the owner to be passed on.”67 Not only do objects represent the characteristics of the person who made them, selected them, gave or received them as gifts, through their continued use they also serve as a locus for embodied interaction with the world in the sense of habit or implicit memory. Moreover, the persistence of solid objects provides a sense of safety in an ever-changing and chaotic environment, a familiarity that provides an opportunity for recognition of both the object and the self which engages it.

A recent novel demonstrates the importance of object stability to an ordered sense of self. In Jonathan Franzen’s 2001 novel The Corrections, Alfred Lambert’s relationships with objects reflect the anxiety-provoking oscillation between a stable identity and Parkinson’s-induced dementia. The world is unstable for Alfred, and objects take on an organic fluidity as his mental state declines. While having lunch at his son’s apartment, for example, he gazes at the snacks he is given, which “were holding about

43 ninety percent steady as food, flickering only occasionally into objects of similar size and shape.”68 His gaze does little to stabilize the objects, and without being stable referents the objects cannot stabilize him: he is unable to situate himself in a world that he cannot grasp even visually. Some objects, on the other hand, do remain constant for Alfred, and by attaching himself to these for as long as possible he is able to keep himself anchored to the real world for a time. One of these is his favorite blue chair, which perhaps remains a stabilizing force for him because it connects him so directly to his sense of his healthier self. He had chosen the piece, “a chair of permanence,” upon retirement, his only major purchase that did not have his wife’s approval. The chair is both a symbol of Alfred’s independence, “the only sign he’d ever given of having a personal vision of the future”69 and a familiar object with which he can activate the same proprioceptive, cognitive, and affective linkages he had experienced in the chair many times in the past. Unsurprisingly, these relationships with objects seem stabilizing or comforting in direct proportion to the emotional significance attached to the objects themselves: Alfred’s beloved chair helps him retain a sense of selfhood that temporally fleeting items, such as food, cannot.

Objects, and particularly furniture, play a similar role for Maarten as he attempts to retain his selfhood in the face of severe memory loss. As they do for Alfred, objects seem to embody the instability of his self as his mind degenerates. The world requires interpreting, an activity he is increasingly unable to perform without his memory.

Maarten explains this in terms of the difference between “looking” and “seeing.” When describing his experience of photographs, for example, he says that anyone can look at a photograph and understand the “universal language” of nature, but “seeing” a photograph involves “being able to read it…people, buildings, roads, coffee cans and the like can be

44 read only in a specific context, in time.”70 External objects, then, can only be “seen” in their contextual specificity—if they are not personally significant to the viewer, they are only glimpsed in a detached manner. In an earlier passage, Maarten uses the same terms when describing the function of memory, explaining that “to see something you must first be able to recognize it. Without memory you can merely look, and the world glides through you without leaving a trace.”71 The world “glides through” Maarten more and more as he loses his memory and his ability to “read” the people and things around him.

He can no longer recognize their shared history: his wife becomes an elderly woman, his bedroom a hotel room. Just as Alfred’s instability of self prevents him from carefully reading/recognizing objects around him, Maarten’s declining abilities of memory prevent him from anchoring himself in time; unrecognizable life does not position him in his own history.

Certain objects in Maarten’s surroundings do seem to play a self-stabilizing role despite his gradual loss of recognition. Although photographs reveal no meaning or historical connection for him, he seems to associate his sense of self with his furniture and his home throughout the book. The personal, temporal connection to his belongings is apparent long before the severe stages of his dementia disease. Describing how he and his wife “putter” around the house now that they are retired, Maarten explains his feelings about his furniture:

You see the room, the familiar furniture as it is arranged, the portraits and

trinkets, the gleaming glass panes of the dresser in the corner of the room which

always remind me of Grandma’s and Grandad’s living room….I look around me.

Everything has received its own immutable place. You don’t throw things away

so easily any more, and if you break something you have a feeling other than

indifference. You look around you and you know that pretty well all these objects

will survive you. They surround you and sometimes you feel: They are looking at

me, almost as equals.72

Maarten’s surroundings connect him to his past through the memories the furniture inspires, through the familiarity with an “immutable” arrangement that withstands the vicissitudes of time and temperament and the importance that these pieces have come to hold for him. He attempts to convey what his father’s desk means to him, explaining

“some pieces of furniture from your childhood remain important to you in some way.

You feel a kind of link with them, it’s hard to say exactly why.”73 He goes on to tell Vera how he was allowed to draw on the desk on Sundays, copying the Rorschachian inkstains on his father’s blotter. As his memory continues to deteriorate throughout the novel, this memory does not leave him, but instead is rekindled every time he comes in contact with the desk. Knowing these objects will survive him, Maarten constructs a sense of permanence of self through the contents of his home, which have a durability that he himself does not.

The use of furniture, and in particular his kitchen table, is especially important for Maarten’s hold on his identity. In part because Maarten rarely leaves his house, the table becomes his primary means of ordering his reality. Household objects provide opportunities for repetitive behaviors that organize time, a non-narrative lived performance of continuity through habits, as Brown notes: “By doing the same thing with the same things you create the illusion of sameness and continuity over and against the facts of disorder and change.”74 Habit and embodiment provide the basis for a sense of

46 security in recognition: “The emotional attachment we have to our homes and surrounding landscapes develops from everyday, embodied interactions with objects in these environments, with their smells, their textures, their sounds and their colours.”

These embodied interactions, or “sensory experiences repeated over time” 75 grow more important for Maarten as he becomes increasingly unable to temporally anchor himself through the cognitive methods of explicit memory and narrative self-construction. In attempts to explain his experiences, Maarten alternately describes himself as “sinking through everything and there is nothing to hold onto”76 and as floating away, a spatial disorientation he attempts to remedy through contact with familiar objects. Small gestures demonstrate the security that his furniture (when recognized) produces in him. Before going to bed, he looks at the furniture in his living room: “Tomorrow it will still be there in the same position. And the day after. That is good. I switch off the light.”77

The animation of things in the familiar relationships we develop with them

(talking to them, or perhaps seeing them as equals, as Maarten does) is dependent on an intimate and engaged relationship that in turn relies on the subject retaining control of himself.78 Without the subject to position the objects as friends or relations, they become objects once more. As the close familiarity Maarten feels with his house begins to dissipate along with his memory, for example, rooms become unstable, the house is unpredictable as he moves through it. He does not know when he will recognize the things around him and when he will be transported into past memories or have no recognition of his surroundings at all. He feels

as if inside me there were someone who remembers another house, the interior

arrangement of which sometimes cuts across that of this house. Rooms ought to

be absolute certainties. The way in which they lead into one another ought to be

fixed once and for all. You should be able to open a door as a matter of course.

Not in fear and anxiety because you don’t have the faintest idea of what you may

find behind it.79

Maarten’s anxiety about losing his sense of his house is indistinguishable from that regarding his self. This symbiosis becomes clearer when he later writes, “Under this life stirs another life in which all times, names and places whirl about topsy-turvy and in which I no longer exist as a person.”80 As his cognitive processes become confused, his mental representations of his house dissolve along with the temporal stability of his self.

Maarten’s memory disjunctions cause him to be simultaneously the Maarten he always was in a familiar house and the Maarten who no longer is, navigating doors and passageways that can lead to no goal, frustrating any temporal ordering of his life. When

Vera tells him it is dangerous for him to stay home alone, she confirms his suspicions:

“Dangerous in the house, it echoes in my head. It confirms my idea that there is indeed something wrong about this house sometimes. As if shifts occur in the interior arrangements, as in an office with movable partitions.”81 As Maarten’s sense of time breaks down, he loses his grounding in familiar surroundings, generating an inexplicable

“wrongness” that causes further stress and confusion about reality.

The anxiety produced by Maarten’s condition is clarified by Brown: “if the apprehensible self is an effect of doing the same thing with the same things (hence preserving continuity over time), then the loss of things spells not a physical but an existential crisis.”82 Things break down the dualism between subjects and objects, interior and exterior, a liminal space Brown refers to as the “slippage between having (possessing

48 a particular object) and being (the identification of one’s self with that object)…the indeterminate ontology where things seem slightly human and humans seem slightly thing-like.”83 This is most apparent when objects stop working: “The story of objects asserting themselves as things, then, is the story of a changed relation to the human subject and thus the story of how the thing really names less an object than a particular subject-object relation.”84 Citing Hannah Arendt’s description of a man achieving his

“sameness,” his identity, by sitting at the same durable table, Brown says that “we use the

‘object world’ to stabilize human life”: furniture becomes more psychologically valuable the longer we use it.85

Read in this way, Maarten achieves his identity through continual interaction with his house, which stands in for Maarten himself as he describes his loss of memory as it is manifest in his sense of his surroundings: “Another person would see only a house, but everything is there: all the gestures, all the smells, all the words of my life. But now it’s gone wrong. Every day something disappears, every day there’s something gone. It leaks everywhere.”86 He maintains his interactions with his most familiar objects, rubbing the kitchen table or squeezing the arms of his chair. When asked why he does this, he explains that otherwise he cannot see or feel his hand,87 and later tells us that the rubbing is a “movement which prevents emptying.”88 Maarten frequently describes a loss of sensation in his body that worsens as his dementia progresses. Sometimes he does not recognize his body parts as his own until he touches them, while in other instances his proprioception is numbed—he literally cannot feel the world when he reaches out and touches things or walks on the floor. The tactile sensation of rubbing his hand on the

49 table seems to both allow him to spatially orient the own parts of his body and to strengthen a boundary between self and other that shores up his “leaky” mind.

Despite his disorientation, Maarten retains the embodied habits through which he interacts with his furniture, attempting to stabilize himself through tactile connection with the objects that have played such an important role in his past. In particular, his kitchen table, which has long been a site of connection with Vera, remains a steadying piece for him. For example, after he confuses Vera with a past lover and she says she doesn’t know what he is talking about, Maarten balances his mental anxiety with tactile reminder of his body as he “desperately” grabs the edge of the table.89 Even after he loses the ability to name the object, Maarten clings to his kitchen table and the habits of posture and use through which he has come to constitute the table and himself: “Don’t take your eyes off now, follow now, until a large, flat area of wood comes into view, a smooth, gleaming expanse, in front of which you are set down, seated, bent double. Hold on to wood, this thick wooden edge. Otherwise you will rise or capsize.”90 The compulsive rubbing, grasping, and touching of furniture that Maarten engages in helps him to compensate for his loss of memory that prevents him from recognizing his surroundings. Knowing the dimensions of his body tactilely rather than cognitively, he is able to engage in a connection to objects that clearly held very specific meanings for him in his past.

The narrative disruption that gradually occurs as Maarten’s memory affects his experience with his house is drastically intensified when Vera decides to place Maarten in a care facility. Carried out of his home on a stretcher while “Furniture, piano, an entire interior, a whole room totters and tilts past me,”91 he might well be speaking of his own selfhood, which seems to slide beyond reach along with list of objects in the room. Once

50 removed from his house, Maarten’s narrative grows increasingly fragmented, shifting from paragraphs to short strings of word separated by ellipses. Without his familiar furniture to connect to, his feelings of being lost in space and time increase: “Out of here…don’t know from which side the world is coming towards me…there must surely be a direction?...every space must have an entrance and an exit, mustn’t it?”92 As

Maarten’s ability to narrate deteriorates, he has an increasingly difficult time using language to enable self-recognition and continuity. This cognitive difficulty is reflected in the text as the narration alternates among first, second, and third person as Maarten describes himself as “he,” writes to “you,” and finally, on the penultimate page, explains a sequence of events that happen to “it”: “They take it to a space where there are beds…they make it sit on the edge of a bed…they undress it.”93

Although he appears to lose the ability to represent (and perhaps recognize) himself as himself or even as human, the paragraphs that follow contains moments that emphasize that Maarten still has a body, experiences emotion, and is connected to his past. As he reaches out in the dark and grabs a hand (it is difficult to tell whose hand he grasps; it may even be his own), we read: “take it gently…calm him…now you no longer need to hold anything yourself…she will do that from now on…she carries you…I carry you…little boy of mine….”94 Whether the hand he grasps inspires memories of his wife or his mother, it is clear that Maarten is still able to generate the sense of self and security through holding that has sustained him throughout the decline of his conscious memory.

Earlier in his time at the care facility, Maarten suggests his caregivers, who do not recognize his need of stabilization through touching things external to him, contribute to his instability: “things keep being taken away in order to prevent one from settling down

51 here…complete disorientation, that is the aim…deliberately refuse to understand that this plate is a prop, an anchor for his fingers.”95 Maarten’s object descriptions reveal the discrepancies in his understanding of his behavior and his caregiver’s reactions to his activities. By evidencing selfhood through object interaction, the novel encourages us to recognize that the “seemingly bizarre and aimless activities” of people with Alzheimer’s may be purposeful.96 Although he does not explicitly mention memory, the reasons Tobin provides for these behaviors all indicate an attempt to connect with the past. For example, although wandering is often interpreted as aimlessness or emptiness, the person may be using life-long patterns of coping such as walking to relieve stress, searching for security through the familiar (his example is a woman with Alzheimer’s speaking to her long- dead mother), or carrying out a former role (such as a job or errand done in the past).97

Cary Henderson, a university professor who recorded thoughts about his experience with

Alzheimer’s disease, identifies his own reasons for wandering: “Very often I wander around looking for something which I know is very pertinent, but then after a while I forget all about what it was I was looking for. When I’m wandering around, I’m trying to touch base with—anything, actually.”98 Although these behaviors may appear strange, especially when they differ from the personality traits the person had before the onset of the disease, Tobin argues that they are likely helping the person to retain their sense of self.

His caregivers may not recognize the importance of his connection with objects, but for Maarten physical interactions with his surroundings literally help him “touch base” with the external world and the movement of time which he cannot reproduce internally. Maarten loses his explicit memory of the things around him, but he seems to

52 retain an embodied connection with objects that allows him to achieve the recognition necessary for a more stable interaction with the world and a more stable self. Tobin’s argument points to a crucial observation about our current understanding of selfhood: requiring narrativity for continuity essentially means requiring one to “prove” their selfhood through external manifestations. As these novels demonstrate, our selves extend beyond the limits of our conscious memories. Selfhood is maintained in and through the body, and exists as much in tacit memory, immediate experience through which the body physically recalls its past, as it does in verbal recollection of the past. Through an embodied recognition of their previous experiences, both Maarten and Yambo are able to create a continuity of self that is not reliant on narrative structures and therefore does not require explicit memory or cognitive awareness; their selves are demonstrated, in

LeDoux’s terms, through the way they act more than in what they consciously know. The purportedly marginal cases of disability experience are shown not to be unusual at all; instead, they demonstrate the difficulty of any person, disabled or not, to meet the criteria of an organized narrative selfhood. The limits of the brain to produce narrative need not determine the limits of self. By abandoning the criterion of narrativity, theorists of selfhood can expand our current definitions to be more inclusive of the diversity of minds and forms of possible interaction with the world.

1 Andrey Tarkovsky, Sculpting in Time: The Great Russian Filmmaker Discusses His Art, trans. Kitty Hunter-Blair (Austin: University of Texas Press, 1989). 2 Don DeLillo, "That Day in Rome: Movies and Memory," New Yorker October 20, 2003, 76–8.

3 John Locke, An Essay Concerning Human Understanding (London: William Tegg, 1859), 2:222. 4 Ian Watt, The Rise of the Novel: Studies in Defoe, Richardson, and Fielding (Berkeley: University of California Press, 1957) 21. 5 For example, Jerome Bruner writes that the narrative telling of a life “is always a cognitive achievement.” ("Life as Narrative," Social Research 54.1 (1987): 692. 6 Antonio R. Damasio, The Feeling of What Happens: Body and Emotion in the Making of Consciousness (New York: Harcourt, 1999), 209. 7 Marya Schechtman, The Constitution of Selves (Ithaca, NY: Cornell University Press, 1996),147. 8Umberto Eco, The Mysterious Flame of Queen Loana. Translated by Geoffrey Brock. (Orlando, FL: Harvest Books, 2006). 9J. Bernlef (pseudonym for Hendrik Jan Marsman), Out of Mind. Translated by Adrienne Dixon. (Boston: David R. Godine, 1989). 10 See David Harvey, The Conditions of Postmodernity: An Enquiry into the Origins of Cultural Change (Oxford: Blackwell, 1990), Fredric Jameson, Postmodernism, or, The Cultural Logic of Late Capitalism (Durham: Duke University Press, 1991), and François Lyotard, The Postmodern Condition: A Report on Knowledge, 1979, trans. Geoff Bennington and Brian Massumi (Minneapolis: University of Minnesota Press, 1984). 11 Jesse F. Ballenger, Self, Senility, and Alzheimer’s Disease in Modern America: A History (Baltimore: Johns Hopkins University Press, 2006), 9. 12 William W. Meissner, Time, Self, and Psychoanalysis (Plymouth, U.K.: Jason Aronson, 2007), 258. 13 Meissner, Time, Self, and Psychoanalysis, 258. 14 Robyn Fivush and Catherine A. Haden, eds., Autobiographical Memory and the Construction of A Narrative Self: Developmental and Cultural Perspectives (Hillsdale, NJ: Lawrence Erlbaum, 2003). 15 Schechtman, The Constitution of Selves, 96. 16Ibid., 94. 17 Kenneth Gergen and Mary M. Gergen, “Narratives of the Self,” in Memory, Identity, Community: The Idea of Narrative in the Human Sciences, eds. Lewis P. Hinchman and Sandra K. Hinchman, (Albany: State University of New York Press, 1997), 162. 18 Stephen Crites, “The Narrative Quality of Experience,” in Memory, Identity, Community: The Idea of Narrative in the Human Sciences, eds. Lewis P. Hinchman and Sandra K. Hinchman, (Albany: State University of New York Press, 1997), 34. 19 While scholars such as Antonio Damasio and Shaun Gallagher do distinguish between the autobiographical self and a separate minimal self that does not disappear with the loss of memory, it is only the autobiographical or narrative self that is described as extending the subject across time and creating the continuity required for selfhood as we commonly conceive it. 20 John Christman, “Narrative Unity as a Condition of Personhood,” Metaphilosophy 35, no. 5 (2004): 701. 21 Ibid., 706. 22 Ibid., 709. 23Quassim Cassam, “Introspection and Bodily Self-Ascription,” in The Body and the Self, eds. Luis Bermúdez, Anthony J. Marcel, and Naomi Eilan, (Cambridge, MA: MIT Press, 1998), 310. 24 Lennard Davis, “Identity Politics, Disability, and Culture,” in The Handbook of Disability Studies, eds. Gary L. Albrecht, Katherine D. Seelman, and Michael Bury, (Thousand Oaks, CA: Sage, 2001), 542.

25 Ibid. 26 Petra Tammi, “Against Narrative (‘A Boring Story’),” Partial Answers 4.2 (2006): 29, emphasis in original. 27 Eco, The Mysterious Flame of Queen Loana, 6–7. 28 Ibid., 13. 29 Ibid., 50. 30 Ibid., 63. 31 Ibid., 212. 32 Ibid., 178. 33 Roberta Culbertson, “Embodied Memory, Transcendence, and Telling: Recounting Trauma, Re-Establishing the Self,” New Literary History 26, no. 1 (Winter 1995): 170. 34 James M. Lampinen, Timothy N. Odegard, and Juliana K. Leding, “Diachronic Disunity,” in The Self and Memory, eds. Denise R. Beike, James M. Lampinen, and Douglas A. Behrend, (New York: Psychology Press, 2004), 230. 35 Eco, The Mysterious Flame of Queen Loana, 13. 36 Ibid., 18. 37 Ibid., 21. 38 Ibid., 27. 39 Pia C. Kontos, “Embodied selfhood in Alzheimer's disease: Rethinking person-centred care.” Dementia 4, no.4 (2005), 561. 40 Ibid. 41 Thomas Fuchs, “The Memory of the Body,” presentation for ‘Time, Memory and History’, the 7th International Conference on Philosophy, Psychiatry and Psychology, (Heidelberg, Germany, Sept. 23-26, 2004). 42 See notes in Daniel L. Schachter, Searching for Memory: The Brain, the Mind, and the Past, (New York: Basic Books, 1996), 160. 43 Ibid., 178. 44 Joseph LeDoux, Synaptic Self: How Our Brains Become Who We Are (New York: Viking Adult, 2002), 117. 45 Ibid., 27. 46 Ibid., 98. 47 Eco, The Mysterious Flame of Queen Loana, 37. 48 Ibid., 86. 49 Ibid., 252. 50 Ibid., 208. 51 Ibid., 22. 52 Ibid., 129. 53 Ibid., 67. 54 Ibid., 177. 55 Ibid., 237. 56 Ibid., 325. 57Ibid., 315. 58 Ibid. 59 Ibid., 448.

60 Tamara Straus, “Eco's amnesiac disappears into all the books he's read.” San Francisco Chronicle, June 5, 2005. 61 Tim Martin, “Tell me, is that a signpost back to myself?”Sunday, The Independent, June 26, 2005. 62 Thomas Mallon, “The Book of Forgetting,” New York Times, June 12, 2005. 63J. Bernlef, Out of Mind: a Novel (Boston: David R. Godine Pub, 1989), 107. 64 Antonio Damasio, “Remembering When,” Scientific American Special Edition: A Matter of Time, 2006, 36. 65 Ibid. 66 Deborah Lupton, The Emotional Self: A Sociocultural Exploration, 1st ed. (Sage Publications Ltd, 1998), 148. 67 Mihaly Csikszentmihalyi and Eugene Halton, The Meaning of Things: Domestic Symbols and the Self (Cambridge University Press, 1981), 61. 68 Jonathan Franzen, The Corrections (Farrar Straus Giroux, 2001), 66. 69 Ibid., 10. 70 Bernlef, Out of Mind, 62. 71 Ibid., 48. 72 Ibid., 10-11. 73 Ibid., 55. 74 Bill Brown, A Sense of Things: The Object Matter of American Literature, illus. ed. (Chicago: University of Chicago Press, 2003), 64. 75 Ibid., 159. 76 Bernlef, Out of Mind, 64. 77 Ibid., 69. 78 Brown, A Sense of Things, 64. 79 Bernlef, Out of Mind, 36-37. 80 Ibid., 63. 81 Ibid., 91. 82 Brown, A Sense of Things, 65. 83 Ibid., 13. 84 Ibid., 4. 85 Penelope Green, “Biodegradable Home Product Lines, Ready to Rot,” New York Times, May 8, 2008. 86 Bernlef, Out of Mind, 98. 87 Ibid., 116. 88 Ibid., 133. 89 Ibid., 30. 90 Ibid., 133. 91 Bernlef, Out of Mind, 137. 92 Ibid., 139. 93Ibid., 149. 94 Ibid., 150. 95 Ibid., 142-143. 96 Sheldon S. Tobin, Preservation of the Self in the Oldest Years: With Implications for Practice, 2nd ed. (Springer Publishing Company, 1999), 226. 97 Ibid. 98 Cary Henderson, Jackie Henderson, and Ruth D. Main, Partial View: An Alzheimer’s Journal, (Dallas: SMU Press, 1998), 24.

Chapter 3: Intelligible Cognition: The Agency of “Ongoing Response”

In a recent study of Traumatic Brain Injury (TBI), nurse Diane Chamberlain argues that TBI damages one’s agency by disrupting the link between will and action, thereby interfering with one’s sense of control. TBI often affects executive brain functions such as awareness, organization, and creativity, and it also impedes the ability to start, stop, and maintain deliberate actions. Loss of these functions, Chamberlain notes, is associated with decline and failure to recover from head trauma. She argues that an important means of recovering this lost agency is the reconstruction of one’s narrative of self. In order to study survivors’ “pathway to recovery,” Chamberlain asked them to

“describe in narrative form what it was like to recover from TBI.”1 In her article she maps the healing process through reoccurring themes in the survivors’ narratives: recognizing and grieving for loss, expressing awareness of reality (e.g., by discussing the insensitivity of health professionals and feelings of isolation), and demonstrating an

“ability to do psychological work” as evidenced by their narratives of progress and self- recovery.2

Progress, in Chamberlain’s framework, is heavily dependent on communication.

Because they could not communicate self-narratives during the interview sessions, severely injured subjects were excluded from the healing process as Chamberlain defines it. Briefly noting that brain scans of severely injured subjects show “the potential for cognitive and sensory function despite their inability to follow simple instructions or communicate reliably,” Chamberlain claims that she observed a “process of complicated grief and suffering” in these individuals. She does not, however, describe her evidence

58 for these conclusions, nor does she attempt to fit those survivors with severe injuries into her study of healing; instead, she merely notes that “a limitation in verbal expression hinders their resolution and recovery” and that “if narration is to be used for recovery assistance, further investigation is needed to facilitate this process.”3

Chamberlain’s argument is based upon a series of common cultural assumptions about the self: that it is dependent upon some form of agency, which involves individual autonomy and a notion of uncomplicated free will, and that narrative formulation and expression are crucial components of a healthy self that can adapt to changing circumstances. Describing her interviewees as “recovering selves,” Chamberlain writes that narrative is “a unique human endeavour, which [for the subjects of the study] involved self-reflection, provided meaning and restored self-hood. Thus, narratives can be an emancipatory exercise. They assert subjectivity and agency, and transform recovery into a more autonomous self.”4 Despite the fact that sufferers with the most severe injuries were unable to describe their experiences in narrative, Chamberlain does not consider alternative expressions or modes of selfhood; instead, she suggests that more research is needed to determine how best to facilitate the narrative expression of these individuals.

Chamberlain’s unstated emphasis on narrative as the best way, perhaps even the only way, to maintain the agency that is required for selfhood reflects popular views of agency. The most common definition of agency in contemporary culture—the ability to have an effect on one’s surroundings—becomes obscured in many selfhood theories by the terms required for that agency to be understood by others. In this project I will examine the heavy emphasis on a specifically narrative form of agency that is evidenced

59 in many selfhood theories. I argue that the ostensible requirement of agency is superseded in these theories by a requirement of narrative intelligibility, an ability to narrate one’s agency and thereby demonstrate that one is indeed a self.

In the case of people with cognitive disabilities, this narrative requirement may be as disabling as any biological impairment. When expression of agency is limited to a particular form such as narrative, those who cannot narrate are deprived of the opportunity to express agency in any form at all. In this chapter I argue that such a limited framework for expression of self constitutes an inattentive reading of agency in individuals who cannot narrate intelligibly. The normative focus on resolving or re- suturing the narrative gap created by illness or injury elides the role of the interpreter in constructing agency: the burden of intelligibility is placed solely on the actor rather than on the interaction between actor and audience. My position calls for a recognition of the cultural constructedness of agency and the fact that it is always the interpretation of agency that stands in for agency itself.

In order to demonstrate this revised form of agency for people with cognitive disabilities, this chapter will focus on two recent detective novels: Mark Haddon’s The

Curious Incident of the Dog in the Night-Time (2003) and Jonathan Lethem’s Motherless

Brooklyn (1999). The detective novel may at first seem to be a genre that further disables narrators with cognitive disabilities, as the form relies on adept users of language to navigate and solve a crime. In popular (mis)understanding, the cognitive disabilities experienced by the narrators in Haddon’s and Lethem’s novels—autism and Tourette syndrome, respectively—are often associated with a lack of agency due to the difficulties with language that they entail, an assumption that would seem to make solving crimes

60 impossible for the main characters. However, these revisions of the typical detective novel highlight the fact that detection is just as much about navigating space as it is about writing a temporally organized narrative, a feature that marks one potential avenue for a different conception of agency that moves away from the narrative requirement.

Examining some of the behaviors in these novels that seem to represent an inability to control narrative self-presentation, I consider how we might examine the characters’ disorderly movements and language as examples of an alternative version of agency that is expressed not through narrative, but through embodied interaction with the world. I argue that the agency displayed in Haddon and Lethem’s novels is more spatial than temporal, situating the agent in response to his or her environment rather than positioning him or her within a narrative of progress. These novels underscore how we might reconsider actions that are difficult to interpret, seeing them as the result of an embodied agency rather than insanity or instability. By finding agency in the narrators’ seemingly non-agentive moments, we can begin reconsidering the manifestations of selfhood in those for whom many, or even all, moments are non-narratable.

The Narrative Intelligibility Requirement

Agency, like other components of self such as memory and autonomy, is based in narrative, according to many contemporary theories of identity. Whether one is seen as an agent is largely dependent on how convincingly one tells a story to explain his or her reasons for acting. As it is described in these theories, agency inheres in the ability to create a coherent self-narrative, controlling one’s explanation of actions to indicate intention and explain reasoning. A person must have a narrative self-conception “in order

61 to be an agent at all,” according to philosopher Marya Schechtman, a requirement which excludes groups such as “infants, the insane, or sufferers from dementia” from agency and selfhood due to their “inability to see their lives unfolding in an intelligible manner.”5

Schechtman goes on to connect this agency to control over oneself and one’s identity:

At a more specific level, we can see that the inclusion of a particular action in a

person’s self-narrative situates it in his life in such a way that he has agency with

respect to it. What it means for an action to be part of someone’s narrative is for it

to flow naturally from the rest of her life story—to be an intelligible result of her

beliefs, values, desires, and experiences….The more an action seems to stem from

a coherent and stable pattern of values, desires, goals, and character traits, the

more it seems under a person’s control.6

This narrative conception of agency appears to be related to the ability to produce a story that one actively creates from a mere collection of events: agency “enables us to articulate the difference between being the subject of a life that one leads and merely undergoing a chronologically sequenced series of experiences.”7 More specifically,

“proof” of agency is seen to lie in reflection and expression of intention, the demonstration of clearly stated reasons for action.

For Alasdair MacIntyre, the ability to provide this proof is what separates humans from other beings:

Human beings can be held to account for that of which they are the authors; other

beings cannot. To identify an occurrence as an action is in the paradigmatic

instances to identify it under a type of description which enables us to see that

occurrence as flowing intelligibly from a human agent’s intentions, motives,

passions, and purposes. It is therefore to understand an action as something for

which someone is accountable, about which it is always appropriate to ask the

agent for an intelligible account.8

The primary factor used to assess agency in another is intelligibility, what MacIntyre calls “the conceptual connecting link between the notion of action and that of narrative.”9

When we encounter others, we read them for signs of agency. However, this reading is usually restricted to language: do they explain their behaviors, express intentions, and so forth? And, equally importantly, are their explanations satisfactory? Do they make sense?

Are they intelligible according to our understanding of the situation? Even when someone is able to narrate their actions, whether they are considered agents is not solely based on the story they tell: narrative is interpreted by the listener, who may decide the teller was not acting under their own power, and therefore did not have agency. Evaluation is always part of the process of attributing agency. In everyday situations, our first

“reading” of others generally assumes agency in people that can readily explain their actions. This assumption also goes the other way—cognitively disabled people who cannot describe their reasons for acting are often assumed not to be agents and are therefore excluded from political participation and deprived of respect. This revisiting of the basis for and interpretation of agency is a crucial foundation for the readings in this chapter. If we understand agency as collaboratively constructed rather than merely demonstrated, we can better understand the role of the collaborator—that is, the person assessing (and in that assessment co-creating) the agency of another. Although agency itself is defined as the purview of an individual, its interpretation and validation occurs communally.

The agency of a person to control the understanding of their disability is therefore reliant on two major factors: the “reading,” or interpretation of agency by another and the

“writing,” or expression of agency by the agent him- or herself. This is where intelligibility comes into play. When we cannot identify an action as intended, according to MacIntyre, we deny agency:

We do not know how to respond; we do not know how to explain; we do not even

know how to characterize minimally as an intelligible action; our distinction

between the humanly accountable and the merely natural seems to have broken

down. And this kind of bafflement does indeed occur in a number of different

kinds of situation; when we enter alien cultures or even alien social structures

within our own culture, in our encounters with certain types of neurotic or

psychotic patients (it is indeed the unintelligibility of such patients’ actions that

leads to them being treated as patients; actions unintelligible to the agent as well

as to everyone else are understood—rightly—as a kind of suffering), but also in

everyday situations.10

MacIntyre’s statement that “it is indeed the unintelligibility of such patients’ actions that leads to them being treated as patients” is a crucial one: the stigma of mental deficiency and the rights and regard that are withdrawn because of it are directly related to the ability to express oneself through an understandable narrative that explains behavior in relation to one’s past and future actions. MacIntyre provides an example of an “everyday situation” that demonstrates the interpreter’s role in deciding who is or is not an agent (or even who is or is not sane). In the example, a man at a bus stop suddenly says “The name of the common wild duck is Histrionicus histrionicus histrionicus.” If a bystander

64 overheard such sentences, he might take them as a sign of madness. However, the sentence could be rendered intelligible if it fit into an explanatory narrative, for example if the bystander had yesterday asked the man the name of the wild duck, if the man’s therapist had recommended talking to strangers, or if the man was a spy speaking in code.11

Schechtman’s and MacIntyre’s accordance of agency to those who self-narrate takes us some way toward an explanation of the fact the people with cognitive disabilities are frequently seen to be without agency. In our culture, discourse, and particularly language, is all too often equated with intelligence and becomes the basis for a normative standard of cognitive function that mistakenly equates self-narratives with selves.

Although it is not always specifically listed as such, narrative reflection appears to be a criterion for agency even in theories that are not explicitly narrative-based. For example, the “core features” of agency, according to psychologist Albert Bandura, are

“intentionality for shaping future plans and courses of action, temporal extension of agency through forethought, self-regulation of motivation, affect, and action through self- influence, and self-reflectiveness concerning one’s functioning and the meaning and purpose of one’s life.”12 Whether or not narrative is explicitly mentioned in descriptions of agency, the implication is the same: agency requires a reflection on action that is narrative in nature. Action must be temporally situated, contextualized in terms of the agent’s past and future behavior: “the process of becoming an agent is the process of both cognitively and behaviorally transcending the present moment, of grasping and acting upon reasons which extend over time.”13 But what of agents who do not “transcend” the present or who are not always able to tell a coherent narrative of their actions? Why must

65 lack of control over one’s narrative or reflective capacities automatically imply an absence of selfhood?

The answer to this question lies in the nature of the relationship between narrative and self. In narrative-centric theories, the self comes into being only through the enaction of narrative, through the formation of a life story that meshes one’s experiences into a coherent, primarily linear, construction that is constantly adapting to incorporate new information about one’s past and present. Similarly, agency is not inherent in the decision to act; it is effectively called into being through the representation of that decision and the subsequent action. Self-construction, then, is primarily a form of narrative control that occurs when actions are made meaningful through language, which is used to place them into a coherent story of intention, decision, and action. This “vocabulary of motives”14 must be recognizable in order to count as evidence of a person’s agency and selfhood.15

As we will see in the following sections, however, this formulation of agency is problematic in that it excludes those for whom coherent narrative formulation of past and present actions is difficult, if not impossible.

Detective Novels and the Search for Self

Detective novels foreground narrative agency by emphasizing the connection between rational modes of thinking and the ability to construct stories. The detective investigates and deciphers a story (the story of the crime) and constructs his own (the story of the solution). The genre emphasizes a restoration of society’s stability through storytelling and cognition, as Peter Huhn notes:

The constitutive role of secrecy for the narrative organization of detective fiction

implies an underlying intellectualist ideology that ascribes decisive importance to

cognition, to the gaining and withholding of knowledge as the prime regulating

factors of social life. In other words, secrecy and cognition tend to function as

instruments of power.16

Narrative is seen in these novels as a means to restore order to a chaotic environment.

The detective imposes order on chaos by eradicating the disruptive force of the crime, containing fragmented events within a coherent narrative. Control of narrative through the intellect is particularly important; the detective’s status depends on his ability to decipher, author, and conceal stories. The agency of the detective lies in his ability to use his mental acuity to both read and write narratives of disruption and reconstruction. If he can correctly read the clues and narrate the solution effectively, he can regain control of the wayward narrative of society, suturing the rupture caused by the crime.

The traditional detective story appeals to our most rational ways of thinking: it is unemotional and invites readers to follow a logical series of linked clues to solve a puzzle, usually involving a murder. Emotion (such as the passion or rage of the murderer) serves a highly disruptive function in the orderly world of detective fiction, where problems are solved by learning to use the intellectual tools of deductive reasoning and ratiocination. I argue that this logical “reading” of the puzzle (which is encouraged in both the actual readers and the fictional detectives of the stories) also privileges spatial understanding of clues in ways that traditional narratives do not: readers must keep track of clues that they collect from the pages and chapters of the physical novel, and fictional detectives must not only remember sequences of events, they must be able to visualize

67 many different clues from different times, people, and places side by side in their mental reconstructions. The reproduction of signs, charts, and other physical symbols is therefore very important to the solution of detective story crimes. Language itself becomes a region to be navigated, charted, and graphed in the pursuit of the solution, both physically

(through the words on the page) and symbolically as the readers and characters attempt to order their sleuthing experiences and the pieces of the puzzle they have collected into an orderly description of the crime, its implementation, and their path to solution. The emphasis on spatial understanding in detective fiction makes the genre an ideal medium for conveying the possibility of an agency that gains its meaning not from the temporal relationships between events, but through constant connections between people and objects that need not be ordered through language.

Spatial Agency in The Curious Incident

Mark Haddon’s novel The Curious Incident of the Dog in the Night-Time explores the experiences of 15-year-old Christopher Boone as he attempts to solve the murder of his neighbor’s dog, Wellington. Although no label of disability is explicitly mentioned in

The Curious Incident, Christopher displays a combination of characteristics that most readers (and Haddon himself) identify with autism spectrum disorder. Christopher has difficulties with communication and interpreting others’ behavior, doesn’t like to be touched, has numerous rules for his life, and hates all lies, a category in which he includes most metaphors and stories. He likes facts and numbers, and performs mathematical calculations in his head when he is upset. Christopher, like others with disorders on the autism spectrum, also finds the challenges of narrative difficult. He

68 cannot accurately “read” the body language and facial expressions of those around him, and his own actions are often misinterpreted by others who cannot understand his thought processes. Even in his written narrative in The Curious Incident, endings are sometimes told before beginnings, and series of events are (seemingly unintentionally) described out of order.17

One particularly salient feature of The Curious Incident that allows us to explore the intersection of Christopher’s disability and his status as a detective is his relationship with time, a “mystery” which he seems to fear more than anything else. Literary critic

J.K. Van Dover argues that the detective’s mission is to know an intangible past world of certainty, “an archived world of the unchangeable and thus knowable past,” by investigating the present, “a visible, ephemeral world of present experience, which is unstable and unknowable—a battlefield littered with meaningless or misunderstood corpses and broken swords.”18 Because it is not in constant flux like the present, the past can be known, and its truth consists of narrative, “a temporal sequence of causally related actions—a story….Phenomena may vanish, but the narrative can be reconstructed, even after decades, even after centuries. The true story can always be told.”19 For Christopher, however, the true story cannot always be told, especially if the detective is required to establish a coherent linear narrative of the past, and for this reason Christopher cannot achieve the detective’s mission “to know an intangible past world of certainty.”

Many of Christopher’s concerns can be traced to a fear of time or of an unknown present or future. Early in the novel, for example, he tells us that he does not like shouting: “It makes me scared that they are going to hit me or touch me and I do not know what is going to happen.”20 His difficulties in understanding the connection

69 between people’s faces and their mental states lie in the fact that he cannot work out these connections in the space of a few seconds.21 Explaining his problem with lies,

Christopher reveals that his mental representations of events do not move fluidly through a linear timeline, instead becoming bogged down with fear of the unknown:

A lie is when you say something happened which didn’t happen. But there is only

ever one thing which happened at a particular time and a particular place. And

there are an infinite number of things which didn’t happen at that time and that

place. And if I think about something which didn’t happen I start thinking about

all the other things which didn’t happen.22

Christopher arranges temporal events in his mind spatially, so that Van Dover’s past world of certainty becomes clouded by all of the past narrative trajectories that did not take place. The possibilities associated with lying cause an infinite proliferation at one particular point, which Christopher finds overwhelming. Considering all of these possibilities, he tells us, makes him feel afraid: “like I do when I’m standing on the top of a very tall building and…I’m afraid that I’m going to forget to stand up straight and hang on to the rail and I’m going to fall over and be killed.”23 Later in the book when he gets upset while waiting for his A level test results he tells us that “whenever I thought about the future I couldn’t see anything clearly in my head and that made a panic start.”24 For

Christopher, a simple narrative consisting of an event happening at a particular time and place is not simple at all, for he cannot narrow down the number of events that did not happen at that time or place.

The (Un)Intelligibility of Autism

The obstacles to narrative for people with autism have been well researched.

Cognitive psychologist Uta Frith explains that people with autism have weak central coherence, meaning that they have difficulty combining fragments into a larger whole; instead, they tend to disregard context, focusing on details rather than using situational cues to give meaning to individual experiences.25 Neuroscientist Matthew Belmonte suggests that all three of the primary diagnostic criteria for autism (impairments in social interaction, difficulty with communication, and repetitive and stereotyped behaviors) are due to this disrupted narrative ability. Because of their abnormal neural connectivity, according to Belmonte, people with autism have impaired associative processes, “those that automatically and fluidly extract structural similarities and draw attention to those features most relevant to scene and story.”26 Psychologists have also noted that when telling stories, children with autism have difficulties with specific narrative components, such as managing changes in point of view, understanding the difference between I/you pronouns, using pragmatic markers such as time and place, and narrating rather than describing a sequence of events.27

Because of such difficulties with using traditional narrative forms to explain their actions and express their thoughts, people with autism and other cognitive disabilities are often subject to paternalism, ostracization, and abuse. Disability rights advocates call for more consideration of narratives written by (rather than just about) those with cognitive disabilities, but the privileging of traditional narrative formats and easily interpretable language reinforces a problematic slippage between coherent narrative and agency. Many popular depictions of autism feature an extreme detachment from society that while

71 described as a lack of narrative is actually interpreted as a lack of agency or even a lack of self. As theologian and historian James Fisher writes, “autism is widely understood as a disorder of selfhood in which persons fail by virtue of their condition to fulfill the birthright of developing, disclosing, and searching for an individual identity. The presence of autistic persons thus constitutes a kind of scandal in a culture where the subject in search of self is virtually equated with what makes us human.”28 Note that there is no indication that people with autism do not develop or search for identity

(autobiographies in fact point to the contrary); the difficulty is in the disclosing. If someone cannot coherently explain their identity, then their selfhood is seen as disordered as well. The problematic slippage between coherent narrative and agency creates a standard for “proving” one’s humanity which many people with autism may never meet.

The creation of narrative is dependent on change, something many people with autism and characters like Christopher find incredibly distressing and which contributes to their perceived lack of agency, as Russell contends:

autism is invariably associated with an excessive desire for sameness and routine,

accompanied by the so-called ‘catastrophic’ reactions to change and by a lack of

spontaneity….and coping with novelty is surely one of the hallmarks of

successful agency given that novel situations force the subject to improvise,

instead of relying on routine schemas.29

These catastrophic reactions, sometimes described as “meltdowns” by parents of children with autism, are often attributed to extreme sensitivity to sensory stimuli. A newsletter for educators of special needs children describes an autistic meltdown as “a total loss of

72 behavioral control” that may involve behaviors that injure the child or others.30 This definition again assumes that when a person behaves in a way that is incomprehensible to the observer, they are suffering from a loss of self-restraint, an assumption that leads to their actions being considered as irrational, unstable, and non-agentive.

In Haddon’s novel, Christopher frequently experiences these extreme reactions, which might be interpreted as a failure to cope with change if not for his reinterpretations.

Christopher becomes overwhelmed whenever he is questioned aggressively, whenever he cannot make sense of the things he sees, and when he is surrounded by images, sounds, and smells that are too great in number or intensity. His responses to this overstimulation include screaming, moaning, banging his head on things, losing awareness, curling into a ball, and withdrawing from interaction. Christopher describes such a moment in his childhood, when his mother offered a ride home to other children from his school, but he could not deal with the additional stimuli: “I started screaming in the car because there were too many people in it and Jack and Polly weren’t in my class and Jack bangs his head on things and makes a noise like an animal, and I tried to get out of the car, but it was still going along and I fell out onto the road and I had to have stitches in my head.”31

Although in real life a person with autism might not be able to recount motivations for such behavior, the fictional and high-functioning Christopher is able to indicate that there were too many people (and specifically, strangers) in the car. Rather than seeing them only as an uncontrollable response to being overcome by panic, his actions could be read as a decision, self-injuring though it was, to remove himself from intolerable stimuli.

In other moments of extreme overstimulation (usually involving unfamiliar spaces or changes in his routine), Christopher experiences the disruption of change physically:

73 for example, when furniture in the living room is moved he becomes dizzy and sick.32 He responds to this trauma by “doing groaning,” usually while confining himself to a small space such as a closet or corner.33 At these moments, Christopher seems to shift his focus away from the painful sensory stimuli to more stable aspects of his environment, such as his own voice (by humming or groaning) or by pressing his head to the ground. At the beginning of the novel, for example, his neighbor screams, and Christopher reacts by shifting his perceptual experience: “I put my hand over my ears and closed my eyes and rolled forward till I was hunched up with my forehead pressed onto the grass. The grass was wet and cold. It was nice.”34 This confinement and physical pressure (most often produced by pressing his head against the ground or a wall) seems important in this coping process for Christopher, appearing to serve a similar function to Temple

Grandin’s squeeze machine. This device, which Grandin developed to manage hypersensitivity to touch and sound stemming from her autism, uses compressed air and two side-boards to apply continuous pressure to the body of the user within it, producing a relaxing effect.35

To the outsider, Christopher’s autistic reactions—screaming, groaning, curling into a ball, pressing his face into the ground—may appear to indicate a loss of control that prevents his actions from “counting” as those of an agent. If we move beyond the notion of agency as dependent on language and narrative, however, Christopher’s non- narrative impulses (movements or thoughts that disrupt a particular narrative trajectory) demonstrate alternative means of agency, an agency that is defined not by reasons for acting but by orientation to the world, by the immediacy of the body interacting with its environment. This form of what Stuart Murray calls “autistic presence” is evidenced not

74 in visibly “meaningful” movements that are easily analyzed and interpreted, but in sensory experiences and tactile focusing that cannot necessarily be explained using typical cause-and-effect storytelling techniques.

Amanda Baggs, an autistic woman who has written and blogged extensively about her experiences, illustrates my point that autistic agency is not immediately recognizable by normative standards. In 2007 Baggs posted a video on YouTube titled “In My

Language,” the first half of which shows her interacting with objects (e.g., rubbing and touching things, flicking her hands through water) and making noises (by humming or flapping paper, for example). In the second half of the video, using captioning and computerized voiceover, Baggs calls these sounds and movements her “native language,” what Murray refers to as “her daily sense of her articulated self.”36 This language, Baggs writes, is not about producing symbols for interpretation; it “is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings….Far from being purposeless, the way that I move is an ongoing response to what is around me.”37 Describing a series of photographs of Baggs apparently “lost in her own world and unable to care for herself,” Murray notes that when viewed in light of

Baggs’ own descriptions of the photos, she “is seen to be curled up in a ball not as some indicator of a ‘retreat from the world’ but because it provides sensory pleasure for her; sitting immobile is not evidence of ‘retardation’ but of preference.” As Baggs herself notes, “‘There’s nothing to understand, nothing to figure out, nothing to figure out, nothing to fix.’”38

Viewing Christopher’s actions in light of Baggs’ “constant conversation” with the environment helps us understand his self-positioning as a detective, a role which allows

75 him to shape his agency in a way that helps him manage change and the unknown. For

Christopher, space, rather than temporality and narrative, forms order from the chaos around him. Language is unstable for Christopher, and therefore it can never be an adequate organizer of reality. Christopher prefers maps and numbers because they represent a particular and containable moment, and he likes timetables even though they are not absolute maps but only diagrams of events that may or may not happen. James

Berger questions why Christopher seeks to anchor himself in time through timetables and watches rather than narrative, which is “precisely the mode of knowledge that, in general, situates the human subject in time.”39 The answer to this question lies in Christopher’s view of his own narrative, which he sees as a puzzle to be solved rather than a figurative tale. As Berger notes, “Christopher wishes for a form of knowledge and expression that is spatial, not temporal; and that therefore can be certain, not contingent.”40 Christopher’s desires for certain and specific knowledge are likely related to his inability to understand the temporal and causal connections that make up traditional narratives. Because he is not able to adequately navigate the affective and emotional aspects of social interaction, he prefers to view himself as a detective, situating himself within a puzzle that is just as much spatial as it is temporal. The detective novel genre itself becomes a map for

Christopher, delineating specific events that should happen (interviews with neighbors, exploration of the scene of the crime) and a familiar vocabulary (for example, “red herring” and “prime suspect”) that allows Christopher to both establish his credibility as a detective and spatially organize the events around him in a map of the crime scene.

Motherless Brooklyn and the Assumption of Agency

Motherless Brooklyn, Jonathan Lethem’s 1999 novel about a detective with

Tourette syndrome, provides another example of “ongoing response,” to use Baggs’ terminology, presenting an often misidentified form of agency that relies more on space than on narrative ability. Lionel Essrog, the narrator of the novel, presents a second neurological disorder commonly associated with a loss of agency. Tourette syndrome is known as the “cursing disease” because of the coprolalia, or compulsive use of obscenities, it causes in some of its sufferers. Despite the prevalence of cursing in popular portrayals of Tourette, only a small percentage of people with the syndrome experience uncontrollable vocalizations, which may be comprised of echolalia (repeating spoken words), whistles, grunts, or other short sounds in addition to cursing or inappropriate statements. The most common tics that people with Tourette experience are physical, repetitive gestures in simple or complex patterns that may include clenching of particular muscles, facial expressions, neck or head movements, blinking, or touching things or people.41

In Lethem’s novel, Lionel is a detective attempting to solve the murder of his employer, small-time Brooklyn gangster Frank Minna. Minna recruits Lionel and three other boys from a local orphanage as teenagers, eventually taking them in full-time when he sets up an undercover detective agency. Directed by Minna, the detectives complete odd jobs of surveillance and physical force, including destroying a carnival Ferris wheel, stealing electronic equipment, and moving instruments and furniture for unknown clients.

Unlike Haddon’s manipulation of the classical detective whose logical reasoning prevails over the trickiest of puzzles, Lethem plays with elements of the hardboiled genre.

Hardboiled detective stories (of which Dashiell Hammett and Raymond Chandler are perhaps the most notable authors) gained popularity in America in the 20s and 30s, featuring often violent, masculine, tough-talking detectives.

Nicknamed “freakshow,” Lionel deviates from the typical hardboiled detective mostly in terms of his Tourettic language, a focal point in the novel that allows Lethem to use the combination of the detective genre and a narrator with Tourette to comment on the limitations of narrative while exploring the experience of cognitive disability.

Lionel’s uncontrollable words and sounds make his job as the confident, laconic, wise- cracking detective difficult, as they constantly undermine any possibility of stability. The narrative of his detection is inundated with anti-narrative elements, strings of nonsense words, descriptions of twitches, and tangents describing the constant connections he makes in his mind. For example, while listening to Minna speak, Lionel tells us that he gritted his teeth while his brain strung together recent pieces of conversation and phonic associations such as “guy walks into the ambulance ramp stabs you in the goddamn emergency gut says I need an immediate stab in the garbage in the goddamn walk-in immediate ambuloaf ambulamp octoloaf oafulop yells oafulope!”42 The teleology of the detective narrative is impossible when Lionel is the detective, and in a metatextual moment he indicates that he likes it that way. We are told on the very first page of the novel that when Lionel’s words “find too much perfection” they seek to disrupt it: “my little army rebels, breaks into the stores. Reality needs a prick here and there, the carpet needs a flaw. My words begin plucking at threads nervously….It’s an itch at first.

Inconsequential. But that itch is soon a torrent behind a straining dam….That itch is my

78 whole life.”43 Lionel’s response to this “itch” is the primary means through which he deliberately seeks agency in the novel.

Descriptions of Tourette syndrome often portray a person without individual agency, a passive sufferer at the mercy of uncontrollable urges. Tics are associated with a lack of control, as Cheshire Calhoun notes: “We fail to act as agents when impulses that we do not authorize move us rather than our own reasons. Because they typically cause us to act against our better judgment, obsessions, compulsions, irresistible urges, overwhelming aversions, addictions, and weakness of will are paradigm instances of states that impair agency.”44 The Stanford Encyclopedia of Philosophy uses a person with

Tourette syndrome as an example of “someone whose behavior does not even qualify as an action…whose verbal outbursts and bodily movements are not even voluntary.”45 Tics are “meaningless movements” that can “appear to be purposive” and can be “confused with goal-directed behavior,” as psychiatrist James Leckman and his cowriters note in

“Tourette syndrome: The Self Under Siege.”46

Although to outsiders tics may only “appear to be purposive,” many people with

Tourette believe that their tics actually are purposive to some extent. Tics are frequently described as having a voluntary or intentional component. The person with Tourette often feels a “premonitory sensory urge” to tic which creates a state of inner tension as he struggles against yielding. The urge often becomes greater (in volume or in degree in the case of gestures) if suppressed, and when the tic escapes or is released, it is usually accompanied by a sensation of relief. One man with Tourette describes the urge as

“irresistible, calling for an almost inevitable response.”47 The “almost” is key in this statement, as many patients describe being able to temporarily suppress or redirect their

79 tics. Efforts of control over tics most often occur as an attempt to shape social perceptions of the person with Tourette. This active shaping indicates that to some extent people with

Tourette are agents in the most traditional sense, as anthropologist Andrew Buckser argues:

TS sufferers are not passive victims of social stigma, ground between the gears of

a misperceiving society and an oppressive physical symptomology; they are

central agents in determining how their illness will be perceived and understood.

Nor is such agency the preserve of a few hardy and independent-minded souls—

such action is a basic feature of life with the disease for the great majority of those

who have it. To have TS is to be an agent in its cultural construction, an active

participant in the way that passersby see and make sense of it. Such agency is,

itself, in a real sense a symptom of Tourette.48

Lionel does have some control over his tics; he says he “squelched dozens” for every tic issued. He redirects some verbal outbursts into barks, grunts, and twitches, as when he begins shouting in the hospital while he waits for the report that Minna has been killed: “I modified the words into a growling sound, along the lines of whrywhroffsinko—but the effort resulted in a side-tic: rapid eye blinks.”49

Despite first-person descriptions of Tourettic movements as voluntary, the fact that people with Tourette are frequently described as lacking control demonstrates once more that the interpretation of behavior by others has just as much, if not more, weight as intention in social determinations of agency. For example, philosopher Valerie Hardcastle claims that although people with Tourette may report voluntary movements, “we can clearly see that the tics, or at least the urges to perform them, are not under the patients’

80 control. They are easily triggered by external events. Tourette patients quite often copy the behavior and speech of others (and themselves) in their tics. In a very real sense,

Touretters’ thoughts and actions are alien.”50 Rather than encourage this understanding of

Tourette syndrome as “alien,” I suggest that we attempt to dissociate the overarching concept of agency from the particular concept of narrative agency. The latter, which refers specifically to the agency one has over one’s own narrative, need not be the determining factor for establishing any agency that serves as a basis for selfhood.

As I have described, agency as control over one’s thoughts or actions does not necessarily correspond to control over one’s story. Understanding agency necessitates that we also understand the constructed nature of the narrative forms that are so commonly used as criteria for defining it. Many types of thought, movement, and expression may create an agentive stance, a position from which one orients oneself to the world, a shaping of existence that may not rely on linear emplotment, causal chains of action, or narrative consistency. A requirement for these elements of story, which sociologist Clive Baldwin argues constitute the central structural features of our understanding of narrative, leads to the “narrative dispossession” of people with dementia who cannot follow or create traditional narratives.51 This dispossession entails a loss of control over their lives, as decisions are made for them in their presumed absence of agency. Although Baldwin’s solution to this isolation is to emphasize ways people might narrate their lives through other forms of expression (such as dance or art), I would like to suggest that we might also attempt to read agency in actions that may not seem to be narratable at all.

We constantly read others, which is to say we constantly interpret them. And with this interpretation comes the unavoidable possibility of misinterpretation. Amanda Baggs, with her ability to engage with the world both narratively and non-narratively, emphasizes that her everyday interactions with people and objects is indeed a form of engagement, not separation. Although it might be difficult to infer a story from her movements and sounds, this should not suggest that her actions are any less purposeful or meaningful than anyone else’s. Of course, in the absence of assuming agency in any object, animal, or person, it is difficult to imagine how we might practically assess an action that does not fit into familiar frameworks. However, it is not so difficult that it cannot be done. While it is extremely likely that an interpreter/reader of another will resort to narrative to explain the behavior that he sees, an understanding of the possibility for multiple and unusual forms of agency will go a long way toward influencing the stories that he tells, or “writes,” about the person with a cognitive disability. Motherless

Brooklyn can help to illustrate an example of this alternative interpretation of apparently non-agentive behaviors. Rather than merely noting all the ways that Lionel’s language excludes him from his community and makes him a passive sufferer rather than an agent of meaningful action, we can begin our encounter with Lionel from a position of assumed agency, asking instead what kinds of meaning and engagement are made possible by his

Tourette syndrome.

The Agency of Touch

Attempts to regain agency once one has lost control over one’s story reflect a narrative desire for continuity and coherence. Illness memoirs often follow specific

82 trajectories of rupture and restoration that help the sufferer to cope with the instability caused by the disease. This disruption involves a disconnect between past and present.

The self that once was no longer exists, a dissolution of the narrative prior to illness that causes a kind of trauma due to the failure of the life story to adhere to cultural expectations for smooth, linear narratives. As Shlomith Rimmon-Kenan notes, this narrative disruption may be exacerbated by a “blocking” of the future, described as an

“evaporation” as uncertain prognoses or terminal illnesses force the person to live in the present without the security of long-range plans. This blocking, according to Rimmon-

Kenan, results in a restructuring of narrative, “bridging the gap by creating a new kind of continuity, or a continuity governed by different emphases.”52 For example, the narrative restitution of self might involve renarrating the past to more accurately line up with one’s present self, emphasizing experiences of earlier disruption that mark one as a survivor and indicate that this situation, too, will be overcome.53

In contrast to this focus on the past, Lionel’s Tourettic utterances in Motherless

Brooklyn constantly shift the focus of the narrative to his immediate present. He constantly disrupts his own story of detection: he frequently spends paragraphs or pages explaining how he has “meta-Tourette,” relating everything around him to his disorder:

“Thinking about ticking, my mind racing, thoughts reaching to touch every possible symptom. Touching touching. Counting counting. Thinking thinking. Mentioning mentioning Tourette. It’s sort of like talking about telephones over the telephone, or mailing letters describing the location of various mailboxes.”54 The “variants of Tourette”

Lionel notes include: insomnia (“the waking brain races, sampling the world after the world has turned away, touching it everywhere, refusing to settle, to join the collective

83 nod”55); guilt (“it has a touchy quality, I think, a hint of sweaty fingers. Guilt wants to cover all the bases, be everywhere at once, reach into the past to tweak, neaten, and repair”56); assertions (“assertions and generalizations are, of course, a version of Tourette.

A way of touching the world, handling it, covering it with confirming language”57); and conspiracies (“the making and unmaking of unexpected connections [is] a kind of touchiness, an expression of the yearning to touch the world, kiss it all over with theories, pull it close.”58). The emphasis on touch is essential to Lethem’s presentation of Tourette syndrome and, I argue, an unexplored site for understanding Tourettic agency.

Although the effects of Tourette are rarely so drastic as to eliminate long-range planning, I would like to suggest that the disruption of narrative created by Tourette syndrome functions similarly to the blocking or disruption Rimmon-Keenan notes in illness memoirs. In fact, individuals with Tourette syndrome may experience “blocking tics,” which create a “brief interference of social discourse and contact.”59 The person does not lose consciousness, but is unable to speak for a time either because prolonged verbal tics are strong enough to interrupt motor acts (including speech) or because the motor acts are inhibited or blocked by a non-verbal tic phenomenon that occurs without evidence of simultaneous motor or vocal tics.60 Even in situations where motor acts and speech are not prevented, tics of speech and movement effectively block the narrative of the person with Tourette, who cannot control the immediate future of their narrative nor predict its long-term specificities in any reliable fashion when experiencing tics.

In the case of Tourette syndrome, however, the disrupted story of self is not repaired through a reconstructed narrative. Rather than bridge the gap temporally as

Rimmon-Kenan argues, the individual with Tourette tries to compensate for this block

84 spatially, making up for the inability to connect through behaviors that are possible, like compulsive touching. Observing the way that “Touretters” feel the need to reach out impulsively and touch people in certain situations, Oliver Sacks explains this bridging:

The sense of personal space, of the self in relation to other objects and other

people, tends to be markedly altered in Tourette syndrome. I know many people

with Tourette who cannot tolerate sitting in a restaurant within touching distance

of other people and may feel compelled, if they cannot avoid this, to reach out or

lunge convulsively toward them.61

Sacks notes that Dr. Carl Bennett, one of his patients, repeatedly touches a glass lampshade as they talk. When asked if this would be necessary if the lamp were moved,

Bennett responds: “No. It depends entirely on how I’m situated. It’s all a question of space. Where I am now, for example, I have no impulse to reach over to that brick wall, but if I were in range I’d have to touch it perhaps a hundred times.”62

This touching, a positioning through what Lionel calls “confirming language,” reestablishes the self that is called into question by the unavoidable impulse to tic, substituting confirming spatial situatedness for the disrupted temporal position. Citing a definition from the OED that describes voice as “the vehicle of human utterance or expression,” Kate Brown and Howard Kushner emphasize the importance of voice for establishing selfhood: “voice is a concept that hovers between the literal and the metaphorical, and this instability of reference underlies its conceptual appeal: the distinct phenomenal properties of a particular voice go to imply the uniqueness and autonomy of a self that preexists its communications, a self that is made present by yet also exceeds the physical body.” The voice, from this perspective, is an affirmation of one’s

85 selfhood—the self determines the narrative and the means of communication. With

Tourette syndrome, this self is disrupted: “the voice becomes eruptive rather than expressive, something that happens to a subject….Cursing thus divides temporal from spatial "presence": an utterance issuing here, from a spatially material body, speaks from a now that cannot be referred to a self or to a particular historical moment, a now that remains devoid of immediacy.” 63 Uncontrollable utterances do not stem from a self that bases its present on its past to plan its future; instead, they leave the speaker “on the brink of a future that is not the determined or predictable consequence of the past.”64

In order to compensate for this loss of temporal self-understanding, Lionel’s tics constantly affirm his spatial relationships to the people and objects that surround him.

Lionel interprets his Tourette syndrome as a means to create links between himself and the world. More specifically, the “touchiness” of his syndrome responds to an internal impetus the world produces, reaffirming myriad connections that are always already there, whether recognized or not. He calls this constant connection a “lifetime of tag,” explaining that “the world (or my brain—same thing) appoints me it, again and again. So

I tag back. Can it do otherwise? If you’ve ever been it you know the answer.”65 If the temporality of Lionel’s existence is perpetually disrupted, touching constantly reaffirms his present self by creating a space from which to position himself toward the world.

Rather than merely enacting the impulse of the detective genre itself to restore order,

Lionel’s constant touching seems to simultaneously acknowledge a need for stability and embrace non-orderly ways of being in the world.

The detective novel, as critics often note, is a story about storytelling. It begins with a disrupted story—the tale of the crime which the detective must piece together by

“filling in spatial or temporal gaps in the community or family history disrupted by the crime, restoring order to chaos.”66 This restoration occurs through the narrative agency of the detective, who uses the power of his keen intellect to tell the story of the crime and its resolution. The detective novel is finished, according to Slavoj Zizek, not “when we get the answer to ‘Whodunit?’ but when the detective is finally able to tell ‘the real story’ in the form of a linear narrative.”67

The concerns of the traditional detective story are reflected in Lionel’s description of his Tourettic utterances in the opening paragraph of Motherless Brooklyn: “They placate, interpret, massage. Everywhere they’re smoothing down imperfections, putting hairs in place, putting ducks in a row, replacing divots.”68 The detective similarly smoothes the narrative of the crime by filling in missing gaps, a process that Huhn calls a

“succession of attempts to ascribe meaning to the sign by finding the missing links to the accepted patterns of reality.”69 In the face of an already orderly story, however, Lionel has the urge to reveal its flaws: “Reality needs a prick here and there, the carpet needs a flaw. My words begin plucking at threads nervously, seeking purchase, a weak point, a vulnerable ear.”70 Orderly narrative is a fiction, a “reality-knitting mechanism people employ to tuck away the intolerable, the incongruous, the disruptive.”71 This anxiety over the fiction of orderly narrative is also mirrored in the development of the genre, which critics have noted is marked by a movement from faith in the independent hero to resolve society’s instability through his detection to “growing doubts about the possibility of telling the story.”72 The classic detective novel is often read as a social commentary in which “the vaguely perceived threats to society’s stability are invariably reduced and averted by means of storytelling: the concluding narration of the crime, revealing the

87 origin of the disruption, identifying its individual agent(s), and predicting as well as entailing the proper ending may be taken as a powerful confirmation of the significance of stories and, indeed, of traditional literature, as fundamental social ordering structures.”

In later forms, on the other hand, the reader is more cynical about “curing problems by narrating their stories.”73

In Haddon’s and Lethem’s novels, the anxiety over traditional storytelling reflects the tension between our impulse to slot others into convenient narrative scripts and the impossibility of doing so. “The intolerable, the incongruous, the disruptive” are sites of agency for both Lionel and Christopher. Rather than a narrative agency which consistently explains away, they demonstrate an embodied agency that cannot easily be interpreted. In their moments of disruption, both characters constantly negotiate the world through their bodies in an agentic orientation that affirms connection rather than merely producing isolation as a result of others’ difficulties in understanding. What is defined as lack of control or loss of agency may be more productively seen as an engaged interaction, a form of existing that responds to and influences the world without trying to cure its fundamentally chaotic nature.

1 Diane Chamberlain, “The Experience of Surviving Traumatic Brain Injury,” Journal of Advanced Nursing 54.4 (2006): 409. 2 Ibid., 414. 3 Ibid., 415. 4 Ibid., 416. 5 Marya Schechtman, The Constitution of Selves (Cornell: Cornell University Press, 1996), 159. 6 Ibid.

7 Cheshire Calhoun, “Losing One’s Self,” in Practical Identity and Narrative Agency, eds. Catriona Mackenzie and Kim Atkins, (New York: Routledge, 2008), 193. 8 MacIntyre, Alasdair, “The Virtues, the Unity of a Human Life, and the Concept of a Tradition,” in Memory, Identity, Community: The Idea of Narrative in the Human Sciences, eds. Lewis P. Hinchman and Sandra K. Hinchman, (Albany: State University of New York Press, 1997), 247. 9 Ibid., 251. 10 Ibid., 247. 11 Ibid. 12 Albert Bandura, “The Changing Face of Psychology at the Dawning of a Globalization Era,” Canadian Psychology 42.1 (2001): 12. 13 Jeanette Kennett and Steve Matthews, “The Unity and Disunity of Agency,” PPP 10.4 (2003): 226. 14 James A. Holstein and Jaber F. Gubrium, The Self We Live By: Narrative Identity in a Postmodern World (Oxford University Press, USA, 1999), 12. 15 John Christman, “Narrative Unity as a Condition of Personhood,” Metaphilosophy 35.5 (2004): 700. 16 Peter Huhn, “The Politics of Secrecy and Publicity: The Functions of Hidden Stories in Some Recent British Mystery Fiction,” in Theory and Practice of Classic Detective Fiction, eds. Jerome Delamater and Ruth Prigozy, (New York: Doubleday, 1997), 42-43, emphases in original. 17 This becomes most apparent when Christopher becomes exhausted and upset near the end of the novel. He has returned to Swindon with his mother and decided to take his A level math exams after all. When he writes about taking the exam, however, he describes the middle of the test before the beginning: He tells us that the invigilator, Reverend Peters, went to smoke a cigarette in the middle of the exam, but in the very next sentence he describes the beginning of the exam, telling the reader that “when I opened up the paper and read through it I couldn’t think how to answer any of the questions,” and in the same sentence he tells us that Reverend Peters was there with him (212). On the next page, he writes that he slept that night and then he tells us what he had to eat that evening (before going to sleep) (213). On the second day of his exams Christopher writes about taking the test and what Reverend Peters was doing, and in the second half of the same sentence tells us that Siobhan made him go into the toilets to do relaxation techniques before the exam (213). Although his narrative is certainly still understandable, it does not fall into the linear format that readers might expect to find. 18 J.K. Van Dover, We Must Have Certainty: Four Essays on the Detective Story, (Selingrove: Susquehanna UP, 2005), 153. 19 Ibid., 152. 20 Haddon, The Curious Incident, 4. 21 Ibid., 14. 22 Ibid., 19. 23 Ibid. 24 Ibid., 216. 25Uta Frith, Autism: Explaining the Enigma, (Malden, MA: Blackwell Publishing, 2003), 152-54. 26 Matthew Belmonte, “Human, but More So: What the Autistic Brain Tells Us about the Process of Narrative,” in Autism and Representation, ed. Mark Osteen, (New York: Routledge, 2008), 168. 27 Simon Baron-Cohen, Helen Tager-Flusberg, and Donald J. Cohen, eds., Understanding Other Minds: Perspectives from Autism, (Oxford: Oxford UP, 1993), 248. 28 James Fisher, “No Search, No Subject? Autism and the American Conversion Narrative,” in Autism and Representation, ed. Mark Osteen, (New York: Routledge, 2008), 51.

29 James Russell, Agency: Its Role in Mental Development, (Erlbaum (UK) Taylor & Francis Ltd., 2006), 244. 30 Educator’s Heartbeat 14.1, August 2009, 4. 31 Mark Haddon, The Curious Incident of the Dog in the Night-time, (New York: Doubleday, 2003), 158. 32 Ibid., 47. 33 Ibid., 50, 53. 34 Ibid., 4. 35 Temple Grandin, “Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder, College Students, and Animals,” Journal of Child and Adolescent Psychopharmacology 2.1 (1992). 36 Stuart Murray, Representing Autism: Culture, Narrative, Fascination (Liverpool: Liverpool University Press, 2008), 34. 37 Ibid. 38 Ibid., 35. 39 Ibid., 275. 40 Ibid. 41 Andrew Buckser, “Before Your Very Eyes: Illness, Agency, and the Management of Tourette syndrome,” Medical Anthropology Quarterly 22.2 (2008): 172. 42 Jonathan Lethem, Motherless Brooklyn, (New York: Doubleday, 1999), 27. 43 Ibid., 1-2. 44 Calhoun, “Losing One’s Self,” 195. 45 Sarah Buss, "Personal Autonomy," The Stanford Encyclopedia of Philosophy, (Fall 2008 Edition), italics in original. 46James Leckman et al., “Tourette syndrome: The Self Under Siege,” Journal of Child Neurology 21 (2006): 643. 47 Ibid., 645. 48 Buckser, “Before Your Very Eyes,” 184. 49 Lethem, Motherless Brooklyn, 31. 50 Valerie Hardcastle, Constructing the Self, (Amsterdam: John Benjamins Publishing Co. 2008), 138. 51 Clive Baldwin, “Narrative, Ethics and People with Severe Mental Illness,” Australian and New Zealand Journal of Psychiatry 39 (2005): 1023. 52 Shlomith Rimmon-Kenan, “The Story of ‘I’: Illness and Narrative Identity,” Narrative 10.1 (2002): 13. 53 Ibid., 17. 54 Lethem, Motherless Brooklyn, 192. 55 Ibid., 246. 56 Ibid., 284. 57 Ibid., 307. 58 Ibid., 178. 59 Roger Kurlan, ed. Handbook of Tourette's Syndrome and Related Tic and Behavioral Disorders, 2nd ed. (New York: Marcel Dekker, 2005), 9. 60 Ibid. 61 Oliver Sacks, Anthropologist on Mars: Seven Paradoxical Tales, ( New York: Alfred A Knopf, Inc., 1995): 83. 62 Ibid., 82.

63 Kate Brown and Howard Kushner, “Eruptive Voices: Coprolalia, Malediction, and the Poetics of Cursing,” New Literary History 32.3 (2001): 539. 64 Ibid. 549. 65 Lethem, Motherless Brooklyn, 6. 66 Peter Messent, cited in Philippa Gates, Detecting Men: Masculinity and the Hollywood Detective Film (Albany: SUNY Press, 2006), 85. 67 Slavoj Zizek, Looking Awry: An Introduction to Jacques Lacan through Popular Culture, (Cambridge: MIT Press, 1991). 68 Lethem, Motherless Brooklyn, 2. 69 Peter Huhn, "The Detective as Reader: Narrativity and Reading Concepts in Detective Fiction," Modern Fiction Studies 33.3 (Autumn 1987): 454. 70 Ibid., 2. 71 Ibid., 43. 72 Ibid., 451. 73 Huhn, “The Detective as Reader,” 465.

Chapter 4: Where is Alice? Extended Cognition as a Model for Selfhood

“How do you know when you are communicating with a real person when you cannot talk to them?” In answering this question, Professor John Harris, director of the

Institute for Science, Ethics and Innovation at the University of Manchester, offers the problematic criterion of narrative selfhood to determine which people are “real.”

Considering our obligations to evaluate consciousness in humans who cannot communicate, Harris discusses recent discoveries of recorded brain activity in patients thought to have none, cases which sound much like the Locked-in Syndrome that has recently risen in public awareness after the publication of Jean-Dominique Bauby’s The

Diving Bell and the Butterfly, a memoir Bauby recorded through the service of aides and a system of eye blinks, describing his experience of being aware yet unable to move. For

Harris, this storytelling was crucial in determining Bauby’s personhood status: it is not merely the evidence of consciousness through brain scans or even the ability to interact with outside observers that allows us to “know whether or not there is really someone in there”; communication must take a specific form if it is to be taken as a mark of personhood:

What's special about people is their capacity for what is sometimes called a

"biographical life". Someone with a biographical life is aware of himself or

herself, has hopes, fears, memories: he or she is someone with a past and a future

of which they are aware, who can experience happiness and misery, and who

wants to choose between them.

That's the sort of person we want to return to being if we suffer brain

damage and the person that those who care about us want to welcome back.

If I was in a vegetative state I wouldn't want to come back without coming

back to a biographical life. I would want those who were keeping my body going

to know whether my brain was active or merely activated, whether I was living a

life in there or whether my brain was simply responding to external stimuli. That

is the question that still remains to be answered.1

A central component to the personhood Harris outlines is the importance of an intact biography: he believes a person is someone who experiences life as a linear progression, who remembers the past and looks forward to the future. When that capacity for self- narration is lost, under this model the life worth living is no longer possible. But what does it mean to live a life “in there”? The language of something happening “inside” points to a fundamental assumption about the self: that it is contained within the body (or, more accurately in light of the contemporary focus on neuroscience, within the brain) as a singular unit. The intact biographical life occurs within an individual brain.

Previous sections of this study have gestured toward an understanding of self as intimately connected with the environment beyond the body: in Out of Mind, for example, we saw Maarten stabilizing his sense of identity through grasping furniture, and in The Curious Incident and Motherless Brooklyn, seemingly nonpurposeful movements and sounds created an ongoing connection between self and world. In this final chapter I consider the possibilities for a definition of self that is not contained within the physical body: what (or who) marks the boundary between self and other? Is the self merely supported through external artifacts (such as those that remain triggers for memory, for

93 example), or does the self actually comprise objects and people in the environment in addition to biological structures such as the brain? As I will demonstrate, theories of narrative selfhood rely on a definition of cognition based wholly in the brain that is insufficient for understanding the relationship between self and environment. In particular, arguments for an extended cognition that takes place both inside and outside of the body offer the basis for a model of selfhood that is more easily able to describe those for whom an intact self-narrative is difficult or impossible. Furthermore, a consideration of extended cognition impels a necessary reconception of social and political agency, a move away from the autonomous self that is seen as sole creator of the life narrative. I argue that this view disregards the role of other people in the construction of self, a role that becomes increasingly important in cases such as Alzheimer’s disease where the impossibility of a seamless narrative of coherent and unitary selfhood becomes apparent.

Cognitive Integrity as a Requirement for Self

Closely related to the idea of a self persisting continuously through time is the requirement of integrity, a term often used interchangeably with unity, which narrative theorists cite as foundational for the establishment of a stable self. Because we associate selfhood with a singular, contained, independent unit that largely corresponds with the physical body, our intuition tells us that there must be a final processor, an ultimate arbiter of self, that corresponds to the central character in the self-narrative. While many postmodern theories of identity explore the dismantling of this idea and account for a fragmented self or a multiplicity of selves as the subjects of experience, in everyday life we still persistently encounter an understanding of “person” based on this conception of a

94 continuous unitary identity: as in Harris’ article above, we view the person as a single entity contained within and represented by the physical body. Of course, no one would challenge the idea that bodies inevitably change over time, but a sense of wholeness seen as a prerequisite for selfhood is intimately connected to our sense of our bodies as manifestations of or containers for our inner selves. The current emphasis on narrative selfhood reinforces this view. Though allowing for changes to the self over a lifetime— new characteristics are taken up, old ideas are discarded—and even for a multiplicity of narratives that describe the self in different contexts, the creator and creation of the narrative self often seems disconcertingly similar to the long-discarded idea of a homunculus residing in the head, something that withers and dies without narrative, leaving the “empty shell” that is often used to describe those with severe cognitive disabilities.

This goal of autonomous selfhood, an assumed physical and mental integrity that distinguishes self from world, operates as the currency with which we identify ourselves as unique persons in society. Our individual bodies, delineated largely by our skin, separate what is “us” from what is “outside.” As Cultural Studies professor Nick

Mansfield claims, “we draw an imaginary line around the perimeters of our bodies and define our subjectivity as the unique density of matter contained within that line….we front up for interviews, check-ups and interrogations as the content of our bodies.”2 Our bodies are only the first marker of the person within, however; a physical presence alone is not enough to establish “content”: we must prove the existence of self through communication.

The mind, then, is the final seat of identity in common understanding. For example, in a thought experiment used by philosophers to exemplify this point, person A and person B prepare to undergo a “body swap”: they will enter a machine that switches their psychological lives from one body to the other. They are told that one body will subsequently be tortured and the other will receive a large sum of money. Upon being asked to choose which consequence will be given to which body emerging from the machine, person A, believing that he will be in the body belonging to B, will choose that the B-body be given money and the A-body pain, and person B will choose the opposite.3

Persons switch bodies in this hypothetical; they do not switch minds, because the mind is seen as coterminous with the person while the body is not. Physical continuity may serve as evidence for psychological continuity, but selfhood depends on the latter.

In recent years, the search for neurological substrates for psychological states locates the boundary between self and environment even more specifically, as mind becomes synonymous with brain. Arguing that we live in a “neuroculture” where all components of self are seen to have neurological bases, historian of science Fernando

Vidal describes our current understanding of selfhood as “brainhood,” which he defines as the condition of “being, rather than simply having, a brain.”4 Whether we see the physical limits of the self at the borders of the body or of the brain, it is this notion of bodily boundedness I want to question in my discussion of integrity. The body is seen as the medium whereby the narrative self meets the world, a limit I argue is artificial and not representative of the lived experience of selfhood.

If selfhood is brainhood, then the intuition that persons are unitary and the requirement for integrity shifts from physical integrity to cognitive wholeness, as

96 delineated in the self-narrative. The integrity I describe is a requirement for narrative integrity, a narrative of self that is based on an assumption that mind is bounded by the physical body, from whence a self-narrative generates an individual, internal locus of control (“person”) that does not extend beyond the skin. Narrative becomes the final boundary, the gatekeeper to the integrity of the body, the cognition, and the self. Bodily changes over time may be mediated through narrative, but alterations in narrative function do not find such recourse in the conventional linear plotlines described in narrative selfhood theories. A popular practice for managing the fluidity of the physical body is to use self-narrative to contain and manage the changes, incorporating aspects of illness into a story of selfhood that aims at wholeness and coherence. Illness narratives describe a rupture not only in the integrity of the body, but in one’s identity, and the restoration privileged in these stories occurs through a reconceiving of the body and self through the telling of a seamless narrative that describes both the rupture and the person’s recovery or life beyond it. As Thomas Couser notes, “If the threat of meaninglessness is the most profound threat posed by illness, disability, or other bodily injury, by organizing the experience of bodily dysfunction in coherent ways narratives of illness promise to restore or shore up our sense of the integrity and value of our lives.”5 In the case of cognitive disabilities like Alzheimer’s, though, this narrative self-integration is not possible, as the ability to narrate becomes more and more difficult through the progression of the disease. People with advanced Alzheimer’s who cannot narrate the changes that are happening to them are thus often no longer seen as integrated selves that are valued and treated with respect and care.

Extended Mind

While stable self-narratives serve the practical functions of establishing a predictable history, set of values, and personality which we use to make decisions and interact with others, the “self” that those narratives represent is not solely dependent upon the brain of one individual, an assumption that leads to the requirement of cognitive integrity for recognized personhood and the subsequent exclusion of those who do not demonstrate a stable narrative of self. One avenue for reconsidering the source of selfhood is the theory of extended cognition or extended mind (where “mind” refers to the processes of cognition and consciousness rather than personal identity), a field of tremendous recent interest in the cognitive sciences and philosophy of mind. As exemplified by the work of philosopher Andy Clark, who wrote with David Chalmers a seminal paper in the field titled “The Extended Mind,” 6 this theory of cognition as uncontained by the boundary of the body attempts to move away from the traditional psychological, philosophical, and neurological focus on what Sutton et al. term

“internalist individualism.”7 This emphasis on the mind as something that occurs only within the brain, what I have previously described as a requirement for cognitive integrity, is termed the “brainbound” model by Clark.8 Contrasting this view with what he sees as a more accurate representation of cognition, Clark and Chalmers posit a model of mind they call “extended,” in which “the actual local operations that realize certain forms of human cognizing include inextricable tangles of feedback, feedforward, and feed-around loops: loops that promiscuously criss-cross the boundaries of brain, body, and world.”9 In the extended model, cognitive processes may occur in the world, and brains are only one component of cognitive systems that may include any number of

98 environmental, social, and technological resources. According to Clark, the traditionally discussed “mind-body” problem is really a mind-body-scaffolding problem: “It is the problem of understanding how human thought and reason is born out of looping interactions between material brains, material bodies, and complex cultural and technological environments. We create these supportive environments, but they create us too.”10 This scaffolding, the objects and processes we use to think (which might include anything from calculators to wristwatches to gesturing), creates a mind which might better be described as an extended or distributed cognitive system.

Clark and Chalmer’s most frequently cited example explaining the concept of extended mind is that of a notebook constantly carried by Otto, a person with mild

Alzheimer’s disease. Clark speculates that persons with Alzheimer’s who commit facts to and recall them from their notebooks are using their notebooks in an identical way to that of an unimpaired person using his or her memory. In this example, the notebook literally becomes a part of the cognitive process, compensating for Otto’s faltering biological memory. Clark explains that “certain aspects of the external world, in short, may be so integral to our cognitive routines as to count as part of the cognitive machinery itself.”11

Taking the example of Otto’s notebook beyond a type of prosthetic memory aid,

Clark argues that not only does the notebook allow for cognitive processing to occur in the world (as Otto “remembers” through the use of the notebook), it also presents an example of beliefs being partly constituted by environmental features. He compares Otto to Inga, a woman with a “normal” memory, who believes that the Museum of Modern

Art is located on 53rd street and so walks to that address to visit the museum. When Otto decides to go to the museum, he consults his notebook, which says that the museum is

99 located on 53rd street, so he walks to that address. According to Clark, both Otto and Inga believe that the museum is on 53rd street and there is no functional distinction between the ways they act on that belief.12

Several important features are consistently cited as criteria for extended mind: external constituents of a cognitive system must be accessible, reliable, and transparent.

As Clark notes, in both Inga’s and Otto’s cases “the information is reliably there when needed, available to consciousness and available to guide action, in just the way that we expect a belief to be.”13 Note that this information does not have to be constantly accessible; just as Inga is not conscious of many beliefs at any given moment or she may not have access to her memory while asleep or unconscious, neither does Otto’s information need to be available at every moment to count as cognitive. Under most circumstances, we can say that both Inga and Otto believe the museum is located on 53rd street, and they do not need to consciously think about accessing that belief (though Otto does need to physically access his notebook, Clark is referring to a tool that Otto uses so frequently it has become an ordinary part of his routine).

It is important to note that despite the language of “extension” and “scaffolding,” theories of extended mind do not simply refer to a mind situated in our bodies that then extends out into the world through tool use; instead they claim that our minds are already both in our bodies and out in the world. In fact, there is no “in” or “out” when it comes to mind: mind is composed of the brain, the body, and the components of the world we use to think, including, I would argue, the narratives we use to describe ourselves and others.

If we consider the mind to be the result of many cognitive players, we can imagine that narrative might not be a necessary input for the creation of self, or a necessary output for

100 demonstrating it to others. If we consider extended selves to be based on extended minds, the self is not equivalent to or limited by our brain or physical body, but is composed of all the aspects of our environment, such as material objects and relationships with loved ones, that contribute to our identity. In this sense, a person with a cognitive disability who could not communicate a self-narrative might still be said to be a “self”; values could be represented through familiar objects the person interacted with, for example, or meaningful relationships with family members would be considered as important parts of that person’s identity.

Two points have been made here that are worth emphasizing when considering why extended selfhood might better represent the array of cognitive functions we describe as self-constituting. The first is that theories of extended mind account for the fact that there is no stable self. A self-narrative that attempts to gloss over the inherent instability in human cognition will be at best a useful fiction. The “mind” does not refer to a static biological feature but a constantly coupling and uncoupling array of shifting resources that include brain, body, and environment. We do not extend a stable mind by attaching onto it a notebook and pen; instead, the mind is the notebook, the brain, the body holding the pen, and the process of writing. Pieces of the system may be removed or new ones may be added, functions may shift, and environmental resources may play a greater or lesser role in cognition at different times.

A second feature of extended mind that is essential for this argument is that there is no final arbiter of self, no locus of control within the brain (and mediated by narrative).

As Clark and Chalmers describe, Otto himself is a cognitive system:

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What, finally, of the self? Does the extended mind imply an extended self? It

seems so. Most of us already accept that the self outstrips the boundaries of

consciousness; my dispositional beliefs, for example, constitute in some deep

sense part of who I am. If so, then these boundaries may also fall beyond the skin.

The information in Otto's notebook, for example, is a central part of his identity as

a cognitive agent. What this comes to is that Otto himself is best regarded as an

extended system, a coupling of biological organism and external resources.14

Considering the self in these terms reveals the limited nature of a final coherent self- narrative; in fact, such a narrative may elide other important contributors to cognition at any given time. Clark challenges an opposing idea that restricts the self to the source of final decision-making: “To treat all that falls beyond the mechanisms of ultimate choice and control as external to my cognitive mechanisms is to divorce my identity as an agent from the whole body of memories, skills, and dispositional beliefs that guide, shape, and characterize my behaviors.”15 To say that selfhood is only generated through narrative looks at the entire construction of identity as a conscious decision, when in fact cognitive scaffolding at any given moment is often preconscious, not dependent upon choosing to use external tools, adopting particular beliefs, or framing one’s story in any particular way. Any number of historic and contemporary couplings of body and environment may inform and shape our feelings, beliefs, perceptions, and other aspects of cognition and selfhood.

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The Echo Maker

The potential dangers of ignoring these unconscious contributors to selfhood are explored in Richard Powers’ 2006 novel The Echo Maker. The novel focuses on the story of Mark Schluter, a young man who experiences a serious car accident and suffers brain injury causing Capgras syndrome, a disorder in which one fails to recognize (to feel familiarity in response to the sight of) loved ones, places, and things. In addition to focusing on the narrative difficulties Mark encounters when recovering from brain trauma, Powers creates a specialist in narrative whose self-questioning parallels Mark’s attempts at narrative reconstruction. Mark’s inability to connect with his environment results in a dismantled identity that even narrative cannot suture, while a neuroscientist attending his case, Gerald Weber, gradually becomes aware of the falsehood of his own story of who he is.

Reminiscent of Oliver Sacks, Weber has built his career through popular case histories describing patients with various brain disorders: he “compiled a travelogue of every state that consciousness could enter.”16 Upon reading his books, Mark’s sister

Karin notes that “even when Dr. Weber wrote about people stripped of words, stuck in time, or frozen in premammalian states, he seemed to treat them all like his nearest kin.”17 This familial care is a misrecognition, however, as Weber’s utilization of his patients’ stories only converts them to perceptual tools rather than active relationships.

Weber has incorporated the stories of his patients so much into his everyday understanding of the world that he finds himself constantly thinking in terms of his work, using his case studies to frame and decipher the people around him. At a conference, for example, he “fought the urge to assign a five-digit Diagnostic and Statistical Manual

103 code to everyone who came up to shake his hand,” and we later learn that “everyone he met fit into one of the thirty-six available physiognomic templates.”18 As he eats dinner after his talk, the “entire room developed Kluver-Bucy: popping things in their mouths like babies, carrying on a little too manically, mewling nonsense syllables to each other.”19

Despite this intimate integration into his perceptual processes, Weber does not in fact treat his patients “like kin.” After he interviews them, they almost cease to be selves at all for him, becoming rather more like entries in the statistical manuals used for diagnosis: fixed, categorized according to symptom, and impersonal. After a terrible review which says his stories “border on privacy violations and sideshow exploitation,” capitalizing on “unfelt suffering,”20 Weber slowly comes to realize that his strategy of writing the stories of others as he saw them trapped him in a harmful form of understanding that erased his subjects’ identities. We are told, for example, that Weber has left one of his former subjects “deep inside the narrative mirror.”21 The young man in question, Neil, could not perceive objects in the left half of his visual field and had been asked to view objects on his left in a mirror held above his right shoulder. Rather than believe the projected image existed in the space on his left, the more reasonable explanation to him was that they were appearing in the mirror itself.22 The “narrative mirror” of Weber’s case study has similarly entrapped this man’s true self: while the narratives of his patients help him make meaning of things beyond basic visual perception, he is unable to acknowledge their existence in the world beyond the mirror.

We read that “after the last set of examinations, Weber never saw Neil again. He had no idea what became of the man. Some other neglect wiped him out, reduced him to story.

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The man Weber had met and interviewed at length passed into the man he described in the pages of his book.”23 Weber has forgotten the real man, abandoned in favor of a static narrative serving as a cognitive tool.

Weber’s relationship with his wife Sylvie represents another unacknowledged component of his extended cognition, a fact of which he gradually becomes aware through the course of the novel. Like Otto’s notebook, conversations with Sylvie are reliable and so predictable that he uses them to respond to the world even when she is not with him. For example, when considering how he feels about something, he knows just what Sylvie would say. When he attempts to work out his anxiety over the review of his most recent book, Sylvie feeds back the information he has given her in the past, just as he knows she will. And when Weber suggests that the reviewers might have a point about the exploitative nature of his work, Sylvie confirms his own perspective by saying

“Piffle. You’ve been telling the story of people whose stories don’t get told,” which was

“just what he’d told her he was doing, all these years.”24 She stores information about earlier trips, the buildings they see, and social dates that he can’t remember, serving as an external memory source he knows he can rely upon.25

For Weber, however, it is not clear that the narrative self-construction with Sylvie is mutual; instead, he seems to incorporate only partial narratives of Sylvie into his thinking. He knows his version of Sylvie better than he knows her own. He does not pay attention to the person in front of him. Though they speak about their days while preparing dinner, for example, by the time they sit down to eat “Weber could recall exactly none of her stories.”26 He doesn’t remember information that is important to his wife, for example, that she used to perm her hair and that she loves Renaissance opera.

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When she tells him “You know that,” he “didn’t ask how long she’d loved it. He couldn’t afford the answer.”27 When they are traveling in Rome, he watches her, thinking “Still her, still his traveling companion, despite the years,” but we begin to get the sense Weber feels that he is losing his certainty about knowing her. He takes hundreds of pictures of

Sylvie, “dozens of them from the same angle, as if both woman and monuments were in danger of disappearing.”28

Extended selves are constantly changing, and when considering how we are partially constituted by our relationships we have to take the autonomy of those loved ones into account. In the case of Weber we see that while his wife’s beliefs and desires are incorporated into his own, it is his story of Sylvie that predominates as he bases his understanding of himself and the world on an unchanging understanding of his wife.

When she does not act in accordance with the fiction he has created, his sense of identity begins to unravel. For example, as Weber continues to obsess over his reviews with

Sylvie, she eventually quits feeding back his own lines and tells him to stop obsessing.

When she refuses to help construct the thoughts he is looking for, Weber has difficulty thinking: “Her composure maddened him. He found himself saying absurd things in increasingly incomprehensible fragments. Finally he got up and left.”29 Over the course of the novel Weber comes to realizes that he knows neither himself nor Sylvie. He wonders, “What did he know of his own wife’s life? Who she was when she wasn’t his wife,” and he has no answers.30

It takes the breakdown and reconstruction of Weber’s “self” throughout the novel to make him fully aware of the external components of his self-narrative: he realizes not only is his “self” a story hiding the processes of the myriad networks of the brain, he also

106 understands that his narrative construction is dependent on other people. With horror he acknowledges that he has been integrating his subjects into his consciousness through his anecdotal case studies, reducing them to sketches and completely ignoring them as people afterwards. He has lost track of many of the patients he mentions, and often he can no longer remember details of their lives other than what he wrote in his books. Realizing that the subjects he’d used as case studies were part of him as well, he thinks, “Back home, hundreds of subjects awaited him, real people he’d used as mere thought experiments. Every one of them throbbed in him and could not be cut out.”31 Although people may provide, and cannot help providing, cognitive scaffolding through which selves are co-constituted, when this process involves one self completely projecting onto and erasing the other, or passive self-effacement and reflection of the other, then one person becomes devalued, seen more as an unchanging object than a dynamic human being.

In this sense, considering self-narratives as constituents of extended mind is both beneficial and problematic. While extended minds must, by definition, shift as their array of environmental and biological resources changes, the only resources that “count” as cognitive are those which are reliable and stable. Generic models might well give us insight and shape our perspective, but a useful awareness of extended mind must also entail the acknowledgement that those around us are not merely cognitive resources; they are enveloped in their own shifting cognitive systems that must be taken into consideration if we are to respect their selfhood. The overlap between one creature and another marks a crucial component of Weber’s realization over the course of the novel:

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Some part of us could model some other modeler. And out of that simple loop

came all love and culture, the ridiculous overflow of gifts, each one a frantic proof

that I was not it…We had no home, no whole to come back to. The self spread

thin on everything it looked at, changed by every ray of the changing light. But if

nothing inside was every fully us, at least some part of us was loose, in the run of

others, trading in all else. Someone else’s circuits circled through ours.32

And this, finally, is Weber’s consolation. If the self as we know it is a fiction, a smoothing over of the jumble of disintegrated components, then we do not have to be the ultimate makers of meaning for our own lives. Through inherited physiologies, cultures, and narratives, we are already connected to the living things around us.

This unbounded system of shared knowledge and culture extends from individual selves to more global scales through Powers’ descriptions of Nebraska’s annual migration of endangered sandhill cranes, whose simultaneous kinship and strangeness represent a model for relations between self and other. Powers writes the inherited processes of perception and recognition through the cranes’ migration: “This year’s flight has always been. Something in the birds retraces a route laid down centuries before their parents showed it to them. And each crane recalls the route still to come.”33 The extended cognitive system of the cranes comprises physical landmarks, inherited migratory patterns, and symbolic representational abilities. Powers explains that they “follow landmarks—water, mountains, woods—places recovered from previous years, by a crane map, inside a crane’s head. Hours before the onset of bad weather, they will stop for the day, predicting storms on no evidence. By May, they find the nesting spots they left the previous year.”34 Mark’s journey back to consciousness mirrors the bodily components of

108 knowing: “Once he looks down and sees himself, his hand, throwing. So he has a hand, and the hand can catch. His body, formed through the flung ball. Knows repeats. Even without him, or anyone thinking so.”35 His hand comes into being for him through the interaction with the ball, movements that he does not need to plan because they are ingrained through habit and activated through tactile connection. The conscious self- narrative, the story that tells others about “Mark,” is only one component of identity: cognitive processes and ways of engaging our surroundings are passed to us through genetics and culture, silent contributors to our thoughts and behavior that relate us to, rather than distinguish us from, other animals.

Powers focuses on the evolutionary origins of our brains in order to compare the cognitive anatomy of humans and animals, more similar than they are different. Our

“selves,” based on our abilities to think and communicate using our neural systems and cultural inheritances such as language, make use of brain structures that have resulted from millennia of evolution, a shared history that makes animals more kin than not. The novel emphasizes our reptilian brain, a “record of the long way here.”36 When describing the intimate relationships between people and animals, Powers focuses on the human aspects of the cranes, describing their crowding into “dense bird cities,”37 calling them

“tall as children,”38 and describing the sense of kinship that leads crane parents to sacrifice their lives to protect their young. Mark, on the other hand, is described as having

“animal eyes,”39 “animal sexuality,”40 his ears have “animal precision,”41 and he displays

“animal alarm.”42 The cranes in the novel seem like kin because they are, relations so close that part of them exists within us, developed through shared ancestry, and to treat them otherwise would be to deny part of ourselves.

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But what, then, of our accountability to others? If the self is not contained within the body but circulates in the world, does this heighten our awareness of need, of dependence? The novel points out that humanity itself suffers from a sort of Capgras; we

“selectively reject [our] next of kin, in the face of all evidence.”43 From other species to those closest to us, we refuse to acknowledge the shared construction of our environment and of ourselves. Becoming aware of how one person’s narrative may problematically dominate another’s may be especially important in cases like Mark’s where one’s ability to self-narrate is questioned, or when a person loses the ability to communicate entirely.

Surrogacy and the Extended Self

Returning to the question of how memory functions in an extended mind, we can see how external components of the cognitive system become essential for the maintenance of self in cases such as those of Alzheimer’s disease, where a reliance on one’s own memory becomes increasingly difficult. This everyday functioning of memory through social interaction is less problematic in cases such as that of Weber and Sylvie described above, where an exceptionally close couple essentially remembers for each other. As we saw with Weber, one spouse may misrepresent the other, but when Sylvie can interrupt and redirect this process her ability to construct her own narrative of events based on shared memories is preserved. This is not the case, however, if one member of the distributed memory system can no longer relate his or her own perspective. Situations of impaired narrative skill often require surrogate decision-makers to determine the best course of action concerning another’s life.

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This ethical navigation of extended self is particularly apparent in cases of cognitive disability that require surrogate decision making in cases of life or death. If we are to take the idea of extended mind seriously, then we might consider that an

Alzheimer’s sufferer has not lost selfhood simply because he can no longer create a unified story if he has objects from his past and loved ones through which or whom his self is revealed. Consider the case of advance directives, which often serve as the focal point of arguments over whether a person remains the same before and after the onset of dementia. Advance directives, instructions for the care that should be given or withheld in the case of future illness or injury, often result in a difficult dilemma for proxy decision makers. Should the cognitively disabled person’s earlier wishes be respected, even if this would potentially mean death? Or, if the person in her current state appears to be healthy and happy, should it be assumed that she would have changed her mind about her former assessments of the disease?

Philosopher Ronald Dworkin advocates upholding decisions made in advance directives no matter the circumstances of the person’s life after they become incapacitated. Dworkin takes as his primary example a patient named Margo described by medical student Andrew Firlik in the Journal of the American Medical Association.1

Margo lived at home (with an aide) and seemed to enjoy reading, listening to music, and painting. Although Margo’s Alzheimer’s disease led her to repeat activities seemingly without remembrance (such as listening to the same song and painting the same painting over and over), Firlik reported that “despite her illness, or maybe somehow because of it,

Margo is undeniably one of the happiest people I have known.”44

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To make his point that advance directives should determine the outcome of medical decisions, Dworkin describes a hypothetical situation in which Margo develops a chest infection and will die without antibiotics. Dworkin asserts that if before the onset of the disease Margo had issued instructions as to her care in the event of Alzheimer’s (such as withholding treatment in the case of serious illness), these earlier wishes should be respected despite the apparent happiness with which she currently lives her life. Dworkin argues for an “integrity” view of autonomy, which is based on a narrative view of identity: this argument holds that a period of incapacity is part of the narrative thread of one’s life, and we have the right to manage our own narrative as we see fit. Terming this

“precedent autonomy,” Dworkin claims that the wishes of the pre-dementia person should supersede the post-dementia wishes of that person even if he or she later changes his or her mind, arguing that we should allow people to make decisions based on their own critical interests, to “lead their lives out of a distinctive sense of their own character,” a stance that positions the patient with dementia as one who no longer has the authority to change his or her story.45

Dworkin’s emphasis on a narrative basis for determining what “counts” as a life worth living is similar to the argument made by John Harris described at the beginning of this chapter: only certain kinds of activity count as meaningful enough to be accounted for in identifying personhood. Dworkin distinguishes between experiential interests and more weighty critical interests. Activities fall within one’s experiential interests if one feels pleasure doing those activities (e.g. cooking, playing sports, or listening to music); those actions that cause discomfort, boredom or pain are counter to one’s experiential interest.46 Acting according to one’s critical interests, on the other hand, involves

112 behaving in a way that helps one achieve the “good life,” a moral assessment that involves acting in accordance with one’s own interests. Critical interests promote particular types of meaning and coherence for our lives: raising children or achieving career success are activities that are undertaken because we believe they will improve our lives.47

This moral or good life is based on an integrated narrative, the attainment of which philosopher Christine Korsgaard describes as self-constitution. The moral life, she argues, does not involve a struggle “to be rational or to be good. It is, instead, the ongoing struggle for integrity, the struggle for psychic unity, the struggle to be, in the face of psychic complexity, a single unified agent.”48 In the case of surrogate decision making, according to Dworkin we must attempt to determine what actions would best maintain this unified self-narrative for another. When making end-of-life decisions we consider how that death might affect a person’s life as a whole, “as we might worry about the effect of a play’s last scene or a poem’s last stanza on the entire creative work.”49 In this framework, people should be able to choose their entire narrative, including the ending, and if they are no longer able then others should refer back to the self-narrative that was related before the cognitive disability impacted their cognitive ability. This ignores two important considerations: that people frequently change their self-narratives, and that the assumptions that underlay our decisions may prove to be inaccurate, putting the weight we should give those decisions into question.

These philosophical conceptions of a self based on a coherent story have significant real-world reverberations that can shape the life (or death) of a person with a cognitive disability. Narrative understandings of selfhood are taken up in medical and

113 legal models that have direct impact on policy, cultural stereotypes, and models of care.

In particular, the emphasis on narrative integrity reflects a cultural emphasis on individual self-making in which “self-care” is prioritized, an obligation through which a person works to increase their autonomy by taking responsibility for their health, a practice that creates active and independent citizens.50 Under this “biological citizenship,” decisions regarding optimal health and identity are not just possible but obligatory as “our somatic, corporeal, neurochemical individuality now becomes a field of choice, prudence, and responsibility.”51 The self-narrative of identity, with its emphasis on restoration and closure, serves as a tool of this self-care, a means by which individuals regulate their lives.

The goals of individual health management and active self-construction carry with them an imperative for managing and demonstrating cognitive health that excludes members of the population with cognitive disabilities. The self-care of people with

Alzheimer’s and other forms of dementia, for example, “ends at the moment they enter a stage which is perceived as the termination of being able to act independently.”52 This stage is mediated by communication, as we see in current Texas documents of advance directive, which include statements for the patient to sign such as “My physician and I will make health care decisions together as long as I am of sound mind and able to make my wishes known”53 and instructions for surrogate decision makers in the case of a patient who is “incompetent, or otherwise mentally or physically incapable of communication.”54 While these forms require competence for decision-making on one’s own behalf, failure of the communication requirement may stand as evidence of a lack of

“sound mind.” Legal personhood is determined by cognition, largely based on self-

114 communication. The self-less body of the medical model then becomes the subject of legal declarations where “personhood is retracted,” including the rights, protections, and respect accorded to legal persons.55

Margo’s Alzheimer’s disease and her resulting loss of cognitive and communicative abilities deny her the rights of legal personhood in Dworkin’s view. If we consider Margo’s case in terms of extended mind, however, she is very much still a self in the absence of memory, participating in relationships, experiencing continuity of interests and skills, and expressing desires and values; she is simply not a unified self as

Dworkin describes it, a competent person describing their choices as the singular author of their life story. For Dworkin, compassion “toward the whole person” requires that we respect Margo’s attempt (before the onset of disease) to create (and control) the integrated narrative of her life. But this implies a singular source of narrative identity based on a unified, “internal” self when in fact, her narrative is co-constructed by many others, such as her family and caregivers in addition to her previously-competent self.

What does it mean, then, to respect her wishes? Her current interests, those prepared to make decisions on her behalf, and her past decisions are conflicting. It is by no means apparent that the desires of the pre-dementia Margo should be assumed to take precedence in this life or death decision.

Still Alice

A 2007 novel demonstrates that competing interests are not restricted to those of patient versus caregiver, or to the interests of the same person before and after the onset of a cognitive disability. Instead, as closer attention to fictional models will attest,

115 concurrent narratives may intermittently dominate an individual’s interests at any given time. The central character in Lisa Genova’s novel Still Alice, a Harvard professor with early-onset Alzheimer’s disease, is faced with the challenges of having decisions made for her, allowing Genova to consider the difficulty of decisions when one’s self narrative is challenged not only by family members, but by the fluctuating dissipation and resurgence of once-primary concerns in the face of progressive dementia. As Alice’s husband John determines to move her away from her daughters, the family is caught in the struggle to decide amongst competing wishes: should John, who knew the pre-

Alzheimer’s Alice best and believes she doesn’t want to live at all, be allowed to move her to advance his career, as he believes she would have wanted? Should Alice be allowed to carry out the instructions for suicide she left herself when she was more competent? Should her current wishes, which seem to be for a simple life without tension, be taken into account?

In Genova’s novel, Alice is greatly distressed upon learning about her disease and decides that she will kill herself when her life is no longer worth living. To determine what that point would be she makes a list of things she wants, which include significant moments with her family (such as seeing her son fall in love) but that also include simple pleasures like “more sunny, seventy-degree days and ice-cream cones.”56 She believes that “when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die. But would she quite literally have the presence of mind to recognize it when those curves crossed?”57 Alice’s musings at this point represent one of two contradictory threads of self-narrating that are crucially important for evaluating her post-Alzheimer’s quality of life. Here she considers the proprioceptive pleasures of tastes and temperature

116 as significant factors in determining what kind of life is worth living to her. When she makes plans to kill herself if the disease progresses too far, however, the diagnostic questions she sets up as a daily alert in her Blackberry represent concerns that are very different from the momentary pleasures of ice cream and sunny days:

Alice, answer the following questions:

1. What month is it?

2. Where do you live?

3. Where is your office?

4. When is Anna’s birthday?

5. How many children do you have?

If you have trouble answering any of these, go to the file named “Butterfly” on

your computer and follow the instructions there immediately.58

In the corresponding computer file she writes a letter to herself containing instructions for where and how to take the pills that would kill her. She explains to her future self:

You have Alzheimer’s disease. You have lost too much of yourself, too much of

what you love, and you are not living the life you want to have. There is no good

outcome to this disease, but you have chosen an outcome that is the most

dignified, fair, and respectful to you and your family. You can no longer trust

your own judgment, but you can trust mine, your former self, you before

Alzheimer’s took too much of you away.59

Alice finds the file with little understanding of its import, but compliantly attempts to follow its instructions. However, she cannot remember what she is looking for by the

117 time she gets upstairs, where her husband finds her emptying the contents of the bedside drawer. Seen from Alice’s increasingly confused perspective alone, it is unclear whether the pills have been moved or she simply no longer has the recall to carry out her own instructions, but Alice does not kill herself, avoiding the fulfillment of one possible conclusion to the storyline of “Alice” while allowing Genova to indicate that this was not the only story to be told.

Importantly, Alice’s life after Alzheimer’s is not the horror she imagined it to be when she made the decision to kill herself. Many people have little information about life with a cognitive disability and assume that it would be valueless to them, leading them to plan for a scenario that might bear no resemblance to reality. When Alice is diagnosed with the disease she imagines complete isolation in her future, lamenting the fact that

while a bald head and a looped ribbon were seen as badges of courage and hope,

her reluctant vocabulary and vanishing memories advertised mental instability

and impending insanity. Those with cancer could expect to be supported by their

community. Alice expected to be outcast. Even the well-intentioned and educated

tended to keep a fearful distance from the mentally ill. She didn’t want to become

someone people avoided and feared.60

These concerns belong to the same narrative thread in which Alice felt being able to answer “where is your office?” was essential to her very self-worth, a value system that

Alice finds herself increasingly questioning.

As her disease progresses, Alice finds that she is not alone as she had feared she would be: she establishes support networks with others who have Alzheimer’s, and she maintains rich relationships with family members. At a presentation she is asked to give

118 at an Alzheimer’s Association conference, she tells the audience about the worth she has found in her new life:

I am not what I say or what I do or what I remember….I am a wife, mother, and

friend, and soon to be grandmother. I still feel, understand, and am worthy of the

love and joy in those relationships. I am still an active participant in society….My

brain no longer works well, but I use my ears for unconditional listening, my

shoulders for crying on, and my arms for hugging others with dementia.61

The loss of narrative, as Alice tells it here, does not entail a loss of meaning. Narratives may help us construct meaning out of our experiences over time, but at any given moment Alice is still a part of relationships, is still able to physically interact in meaningful connections with other people, and is still able to experience joy.

Of course, as much as Alice fears losing narrative, in this speech she reestablishes her competence as a narrator, implying through narrative that yes, she is still valuable—after all, she can tell you exactly why. In this regard Genova appears to undermine a project emphasizing the non-centrality of narrative as a measure of human worth.62 However, this stage in Alice’s life clarifies an important difficulty in using narrative competence as a diagnostic criteria for selfhood: narrative abilities often do not disappear instantly—cognitive abilities may seem absent one moment but acutely present the next—but once memory is seen as unreliable then patients are deemed incompetent and denied a voice in the decisions regarding their own care. In a short span of pages

Genova presents four different characterizations of Alice displaying varying degrees of narrative competence:

1. Alice, who writes and delivers an eloquent conference speech.63

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2. Alice, who cannot answer her own diagnostic questions but who feels happy at

the park and whose observations are dominated with sensory details such as

“the sky was clear now, and the heat from the sun and the dry bench warmed

her bones” and “pink and white blossoms from the crab apple tree next to

them were scattered across the ground like party confetti.”64

3. Alice, who is narratively adept enough to read suicide instructions she doesn’t

remember writing but unable to retain them long enough to carry them out.65

4. Alice, who no longer recalls people’s names, but who clearly enjoys being

alive: “She didn’t need to go anywhere. She felt lucky about this….[The

singer] had a lovely voice and big, happy teeth and a lot of skirt with flowers

all over it that Alice admired. Alice hummed along to the music. She liked the

sound of her hum.”66

Alice’s fluctuating narrative abilities67 and the varying weight she places on those abilities demonstrate that experiential interests (such as the ability to delight in flowers or companionship) are inseparable from her critical interests (such as a desire to continue to see herself as an intellectual, capable of producing a sustained and thoughtful self- narrative); in fact both sets of interests are seen by her at different times as reasons for continuing to live. Genova’s novel itself is not a straightforward representation of a coherent story of narrative selfhood; instead, it demonstrates that while important for assessing the viewpoint of the person with Alzheimer’s disease, a singular narrative cannot reveal the entirety of a person’s identity. To adequately assess Alice’s best interests, all of her self-narratives, as well as those of her family and caregivers, must be taken into account.

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The integration of external cognitive resources through family members becomes even more important for those with decreased cognitive function such as the memory loss due to Alzheimer’s. At the end of an essay considering advance directives themselves as part of an extended cognitive system, James Lindemann Nelson points out that in decision-making for dementia patients, “we would do well to bear in mind that we may have real-time access to some of the very same deliberative resources by which those undergoing the disease habitually achieved and sustained mature values, and sorted out their tangled practical consequences.”68 Others are not extensions of the person, but parts of a cognitive system the person herself has helped create. That is, surrogate decision makers do not uphold a person that once was; they did and do serve as cognitive constituents in the system that makes up that person’s identity. In their work on extended memory systems, Barnier et al. study the role of people as components in distributed cognitive systems, pointing to the fact that “encoding, storage, and retrieval in real-world contexts all frequently involve the cognitive activities of more than a single individual.”69

Referring to the necessity of reliability for socially distributed cognition, they claim that

“a partner or a lifelong friend holds more of my past, and can often help me negotiate it more appropriately, than a new acquaintance.”70 It seems a natural choice to turn to a spouse or other particularly close family member to make decisions for someone who cannot communicate her wishes. However, when that family member holds the past narrative in a frozen and unalterable grip, this does not necessarily represent the person’s current best interests even if that narrative focused on the wishes of the person before their cognitive decline.

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The narratives of Alice’s loved ones represent an important feature of her cognitive system: used to think, act, and feel, the interactions of a person with their physical and social environment can have a tremendous impact on their quality of life.

This broad scaffolding points to a significant consequence of extended mind for people with cognitive disabilities: if minds exist in the world, then removal or alteration of those external components of cognition might be as devastating as physical brain damage itself.

Recognizing the extent to which the mind is extended matters because it “drives home the degree to which environmental engineering is also self-engineering. In building our physical and social worlds, we build (or rather, we massively reconfigure) our minds and our capacities of thought and reason.”71 As Clark puts it, if mind is extended, then in some cases “interfering with someone’s environment will have the same moral significance as interfering with their person.”72 Moving a person with a cognitive disability out a familiar environment would decrease their ability to function, to remember, to think. Removing them from social support networks would have similar impact, as Alice’s daughters try to convince their father, telling him that a home health aide in another state “isn’t going to know her history and memories like we do. We can sometimes fill in her holes and read her body language, and that’s because we know her.”73 John argues that Alice would not be able to tell the difference between New York

City and Harvard Square, despite the fact that Alice herself has repeatedly told her family members that she wants to stay. When his daughter argues that “just because she has

Alzheimer’s doesn’t mean she doesn’t know what she does and doesn’t want,” John explains that if Alice had gotten what she wanted, she wouldn’t even be there.74

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A primary tension in surrogate decision-making exists between respecting the autonomy of the individual (for example, her right to die when her life no longer fulfills the criteria she set out when she was able or, in this case, her request to stay in Boston) and caring for her welfare, including listening to and assessing what she might want in the present. In a moment of clarity, Alice tells John directly that she doesn’t want to move to New York, and he is faced with the task of whether to follow her present wishes while believing that she is not acting according to the cognitive or narrative integrity she expressed before Alzheimer’s. If we consider Alice’s wishes in light of extended mind, we might consider her beliefs (that not knowing her daughter’s names indicates a loss of appreciation for that relationship, for example) to have already changed: her earlier beliefs were based on an assumption that no longer holds true. John’s understanding of

Alice is based on an earlier narrative of her that he refuses to alter, but that doesn’t adequately represent the woman in front of him. He chooses to believe her pre-

Alzheimer’s narrative of herself, which includes the belief that her life will not be meaningful to her no matter where she lives.

The disconnect between past and present values becomes apparent in a conversation where John attempts to frame Alice’s understanding according to her critical interests (following Dworkin’s schema), while she expresses satisfaction in experiential interests. John asks Alice her list of diagnostic questions but ends up answering each one for her when she cannot. Unable to explain where her office is, Alice tells John that she doesn’t go there anymore, adding “Then it doesn’t really matter where it is, right? Why don’t we focus on the things that really matter?” She is untroubled by her inability to answer the very questions she had set up to determine the value of her life,

123 instead amusing herself by watching geese, enjoying her ice cream cone, and in response to his asking “Alice, do you still want to be here?” replying, “Yes. I like sitting here with you. And I’m not done yet.”75 Ultimately deciding to take the job in New York and leave

Alice with their children, John follows Dworkin’s view that the “things that really matter” in Alice’s integrated narrative were those she dictated before her Alzheimer’s disease. But in light of her clear vocalization of pleasure with her current situation, this view inadequately values Alice’s competing desires for stability and connection.

The multiplicity of concurrent interests expressed through the characterizations of

Margo and Alice helps to challenge narrow characterizations by philosophers like Marya

Schechtman. In her description of people that due to disease or trauma only experience short-term memories and therefore cannot construct a life narrative, Schechtman portrays this narrative loss as unarguably tragic: “This inability has proved devastating. These people are unable to engage in close, intimate relationships with others. They cannot remember people they meet for more than a few minutes and see them as strangers over and over again. There is thus no possibility of building up a history with another person, learning from mistakes (or triumphs), developing skills, or evolving as a person.”76 This description does indeed sound terrifying. Schechtman’s description corresponds to the contemporary teleological imperative for individual progress, self-care, and personal management of health and identity that dominates medical and legal representations of personhood. The assumed project of self involves learning, improving, healing, self- advocating, and seeking narrative closure through choices that correspond to the singular, independent narrative trajectory we have created for ourselves. Theories of extended mind help to outline an understanding of self that is less restricted by what Stephen Post

124 calls our “hypercognitive” culture, in which nothing “is as fearful as AD because it violates the spirit (geist) of self-control, independence, economic productivity, and cognitive enhancement that defines our dominant image of human fulfillment.”77

If we were to take seriously the concept of extended selfhood, the notion of incapacity through dementia and other severe cognitive disabilities might become less terrifying, thereby affecting the decisions people make on behalf of their future selves. If we understand selfhood as something not lost, but changed, something connected to our past selves through familiar surroundings and relationships, perhaps cognitive disability would not be represented as the living death that so many people currently fear. There is no reason to think that the people in our lives become strangers just because we cannot remember them. Those “strangers” may remember for us, developing ways of interacting, registering our preferences, and establishing meaningful relationships that, while they may not be part of our life narratives, are unquestionably part of our selves.

Extended selfhood does not necessarily entail a disregard for all previous self- narratives of a person’s existence. These must be weighed in consideration of the extended cognitive system as a whole, however. While advance directives or expressed wishes may allow a person to offload those beliefs into external environmental features

(paper, computers, people), the context under which they are being used must be considered: do those directions rely on earlier beliefs about life conditions or circumstances that are no longer relevant? For instance, if a person is afraid of losing her memory of her daughter because she fears that connection will be severed forever and they will become strangers to one another, but later still engages in a relationship that is

125 meaningful to her daughter and brings the woman herself joy, we might consider previous decisions dependent on that early fear to be of less consequence now.

This will not be true in every case, however, and decisions of surrogacy remain at times impossibly complex. If self is extended, which components receive the most weight? Earlier wishes, present life circumstances, or decisions of family members? For practical purposes, there must at times be an ultimate decision-maker, but those decisions would be most thorough and respectful if they accounted for the fact that the person in question still had a self, extended through internal and external cognitive resources, despite the inability to narrate or to communicate a narrative of selfhood. Narratives might better be considered one constituent of a cognitive system; they can be useful cognitive tools for considering and enacting identity, but the absence of narrative need not imply the absence of mind entirely. Extended mind denotes a cognitive system that contains narrative, but does not hinge upon it nor privilege it above other components contributing to the means by which humans feel, think, and act.

1 John Harris, “The Consciousness of These People Remains a Closed Door,” The Independent, February 4, 2010. 2 Nick Mansfield, Subjectivity: Theories of the Self from Freud to Haraway, (St. Leonards: Allen & Unwin, 2000), 82. 3 Marya Schechtman, The Constitution of Selves (Ithaca, NY: Cornell University Press, 1996), 16-17. 4 Fernando Vidal, "Brainhood, Anthropological Figure of Modernity," History of the Human Sciences 22.1 (2009): 6. 5 Thomas Couser, Recovering Bodies: Illness, Disability, and Life-Writing, (Madison: U of Wisconsin Press, 1997), 295. 6 While here I primarily trace the representative examples of Andy Clark and David Chalmers,

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theories of extended mind have been developed through the work of a great many researchers, including Richard Menary, Alva, Noe, John Sutton, Daniel Dennett, Mark Rowland, and others. 7 John Sutton et al., “The psychology of memory, extended cognition, and socially distributed remembering,” Phenomenology and the Cognitive Sciences 9 (2010): 533. 8 Andy Clark, Supersizing the Mind: Embodiment, Action, and Cognitive Extension, (Oxford University Press, 2008), xxvii. 9 Ibid., xxviii. 10 Andy Clark, Natural-born Cyborgs: Minds, Technologies, and the Future of Human Intelligence, (New York: Oxford University Press, 2003): 11. 11 Andy Clark, “Where Brain, Body, and World Collide,” Daedelus 127.2 (Spring 1998): 274. 12 Clark, Supersizing, 226-27. 13 Ibid., 227. 14 Andy Clark and David Chalmers, “The Extended Mind,” Analysis 58.1 (1998): 18. 15 Andy Clark, “Memento’s Revenge: The Extended Mind, Extended,” in The Extended Mind, ed. Richard Menary, (Cambridge: MIT Press, 2010), 56. 16 Richard Powers, The Echo Maker: A Novel, (New York: Farrar, Straus & Giroux, 2006), 93. 17 Ibid., 94. 18 Ibid., 159. 19 Ibid., 232. 20 Ibid., 221. 21 Ibid., 126. 22 Ibid., 125. 23 Ibid., 126. 24 Ibid., 225. 25 Ibid., 226. 26 Ibid., 103. 27 Ibid., 224. 28 Ibid., 226. 29 Ibid., 227. 30 Ibid., 367. 31 Ibid., 260. 32 Ibid., 384. 33 Ibid., 4. 34 Ibid., 97. 35 Ibid., 33. 36 Ibid., 17. 37 Ibid., 97. 38 Ibid., 3. 39 Ibid., 7. 40 Ibid., 20. 41 Ibid., 37. 42 Ibid., 115. 43 Ibid., 102. 44 Andrew Firlik, cited in Rebecca Dresser, "Dworkin on Dementia: Elegant Theory, Questionable Policy," Hastings Center Report 25.6 (1995): 32. 45 Ronald Dworkin, Life's Dominion: An Argument about Abortion, Euthanasia or Individual Freedom, (New York: Alfred Knopf, 1993), 224. Ibid, 201.

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47 Ibid., 201. 48 Christine Korsgaard, Self-Constitution: Agency, Identity, and Integrity, (Oxford: Oxford UP: 2009), 7. 49 Dworkin, 199. 50 Ursula Naue, “‘Self-care without a self’: Alzheimer’s disease and the concept of personal responsibility for health,” Medicine, Health Care and Philosophy 11.3 (2008): 322. 51 Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty- First Century, (Princeton: Princeton UP, 2007) 40. 52Naue, 322. 53 State of Texas, “Directive to Physicians and Family or Surrogates,” October 26, 1999, available at http://www.dads.state.tx.us/news_info/publications/handbooks/LivingWill-English.pdf, accessed March 28, 2012. 54 State of Texas, “Procedure When Person Has Not Executed or Issued a Directive and Is Incompetent or Incapable of Communication,” October 15, 1999, available at http://www.dads.state.tx.us/news_info/publications/handbooks/SURROGATE-English.pdf, accessed March 28, 2012. 55 Susan Behuniak, “Toward a Political Model of Dementia: Power as Compassionate Care,” Journal of Aging Studies 24 (2010): 233. 56 Lisa Genova, Still Alice, (New York: Simon & Schuster, 2009), 118. 57 Ibid. 58 Ibid., 119. 59 Ibid., 271. 60 Ibid., 117-18. 61 Ibid., 252. 62 In fact, this tension between formal and thematic content exists in any novelistic representation of narrative breakdown. While other books in this project include more anti-narrative elements (like sentence fragments or nonlinear events, for example), all must be seen as what may well be inadequate representations of a state of cognition that cannot be accounted for in intelligible language. This paradox in turn points to a bigger conflict between the necessity of mediation for any understanding of cognitive disability and the impossibility of knowing whether that mediated version might do justice to the disabled individual’s own assessment of their condition if they cannot communicate in traditional ways. One possible approach to addressing this difficulty is to embrace as many forms of expression as possible, as I will discuss in my final chapter on narrative medicine. 63 Ibid.,254. 64 Ibid., 266. 65 Ibid., 272-73. 66 Ibid., 288-289. 67 Drawing attention once more to the impossible but necessary mediation of the experience of cognitive disability (see note 62), it is worth noting that these moments of weakening narrative competency are still as a whole well-narrated, a point that might seem to undermine them as evidence of selfhood in the face of narrative loss. However, the narrator of the book is not Alice and these moments are not written in the first person. Though the story is focalized through her perspective, the words are those of an external narrator, someone whose representation might not necessarily be any more accurate than the perspective of Alice herself.

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68 James Lindemann Nelson, “Alzheimer’s Disease and Socially Extended Mentation,” Metaphilosophy 40, nos. 3-4 (2009): 473. 69 Barnier et al., “A Conceptual and Empirical Framework for the Social Distribution of Cognition: The Case of Memory,” Cognitive Systems Research 9 (2008): 34. 70 Ibid., 37. 71 Clark, Supersizing, xxviii. 72 Clark and Chalmers, “The Extended Mind,” 18. 73 Genova, 261. 74 Ibid., 263. 75 Ibid., 268. 76 Schechtman, 147. 77 Stephen Post, "The concept of Alzheimer disease in a hypercognitive society," in Concepts of Alzheimer Disease: Biological, Clinical, and Cultural Perspectives, eds. Peter J. Whitehouse, Konrad Maurer, and Jesse F. Ballenger (Baltimore: Johns Hopkins, 2000), 245.

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Conclusion: Narrativity in Medical Care

As a final reflection on the restrictive nature of the narrative identity thesis, I wish to consider one further arena in which narrative theory problematically privileges cognition in descriptions of self identity, thereby potentially limiting the usefulness of the field for supporting selfhood in people with cognitive disabilities. In the past decade, narrative medicine has become a popular branch of the medical humanities, which aim to promote personal and subjective forms of knowledge alongside medico-scientific data gathering in healthcare. These fields aim to humanize medicine and reduce alienation of the clinical encounter in which the doctor assesses and diagnoses the patient rather than seeing or listening to him or her as a complex person with a life beyond the disease.

Largely credited to the efforts of Rita Charon, who in 2000 began a program for health care workers at the Columbia University College of Physicians and Surgeons, narrative medicine emphasizes the need for doctors and caregivers to have “narrative competence,” defined by Charon as “the ability to absorb, interpret, and respond to stories.”1

Narrative medicine is a “framework for clinical practice” in which narrative competence is necessary to understand the patient’s perspective in order to best treat him or her. Becoming narratively competent includes the development of practical skills

(understanding metaphor), creative skills (imagining possibilities for the storyline), and emotional skills (experiencing empathy). In narrative medicine programs, these skills are developed primarily through reading and interpreting literary texts and through reflective writing.2 By strengthening their narrative skills, doctors will use “emplotment and metaphor and voice” to “see beyond” facts and improve patient care.3

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The goals for the practitioner of narrative medicine range between listening and actively interpreting another’s narrative. For example, Charon explains that narrative medicine helped her understand that patients wanted her to listen and then construct a story of both the person and the illness: “I came to understand that what my patients paid me to do was to listen expertly and attentively to extraordinarily complicated narratives— told in words, gestures, silences, tracings, images, laboratory test results, and changes in the body—and to cohere all these stories into something that made provisional sense, enough sense, that is, on which to act.”4

The reframing of medicine to incorporate the patient’s perspective has enormous potential for improving the lives of people with disabilities by including them as participatory subjects rather than objects to be fixed in the clinical encounter. This shift is particularly important since the current practice of medicine itself may be seen as disabling, as doctors and medical students report equating disability with suffering and

“feeling deskilled” in their work with disabled patients.5 When following the medical model of disability as a pathology to be cured, physicians (often alongside patients and insurance companies) are expected to “identify damage or disease as the cause of pain and disability although often there is no damage or disease that can be identified. Doctors can fall hostage to the predictive frameworks of assessment instruments.”6 If self- narratives, as I noted in my introduction, are also drawn from a cultural bank of acceptable stories, integrating the perspectives of disability studies into narrative medicine can help identify and redefine disabling narrative scripts. For example, the accepted narrative of a dementia patient as someone for whom death may be a preferable option to the exclusion by society and loss of selfhood that many envision would benefit

131 from the promotion of more varied accounts of the experience of cognitive disability.

However, medical practitioners need to take care not to replicate those disabling scripts at a higher level. To frame this caution as a question: in using narrative, are we dictating a particular form of storytelling? Narratives of progress, of cure, or an impetus to fix the narrative itself or reestablish identity through narrative coherence run the risk of becoming yet another assessment instrument used to control a patient’s story and determine the outcome. As I have discussed throughout this project, despite its great flexibility as an interactive tool, narrative as it operates in narrative theories of self— which is largely that model followed by narrative medicine as well—cannot be used as a one-size-fits all corrective for interpreting the personhood of individuals.

Megan Alcauskas and Charon argue that neurology in particular uses language to diagnose disorder: “Neurologists are the custodians of speech and language within the medical community….Not only do details and subtle nuances frequently make the diagnosis, but how the patient tells a story, including word choice, sentence structure, and prosody, takes on clinical significance.” 7 Language becomes “a matter of professional competence.” 8 For example, doctors are expected to repair illness through narrative: “the goal of the physician is to relieve the mystery and its attendant suffering by helping the patient craft a new or amended narrative that can explicate the symptom or sign, provide a plausible causal chain, and begin to demystify the future.”9

As I have shown in other chapters, the use of language as a diagnostic category remains potentially harmful if space is not made for non-narrative forms of selfhood as well. Although narrative medicine research claims that the field embraces multiple forms of communication and expression, a 2011 essay in Literature and Medicine reveals that

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Charon’s emphasis remains on language: “Retrieving things from formlessness with words is what we on either side of the clinical relationship are training ourselves to do.

Form holds things, makes them visible.” 10 She explains that the goals of narrative medicine are to provide “ways of training doctors, nurses, social workers, and therapists how to approach, elicit, interpret, and act on stories.”11

My focus here is the third goal Charon lists, that of interpretation. Interpretation of another’s narrative is inevitable, and it is important to do it with care and engage the narrator as well as other contributors to their narrative (such as family members). This seems to be a goal of narrative medicine, but often an open-ended exploration of another’s experience becomes yet another symptom to be diagnosed and treated. For example, professor of medicine Terrance Holt says that the first goal of medical care is understanding patients’ stories, but this knowledge impels action; as he writes, “[doctors] drop into the middle of patients’ stories and try to change the plot for the better.”12

Training physicians to “read” patients may obscure the ways that by attuning themselves to particular forms of narrative they are also writing those patients’ stories.

The interpretive aspect of narrative medicine relies heavily on the traditional narrative form: Charon defines narratives as “stories with a teller, a listener, a time course, a plot, and a point.”13 Like other narrative identity theorists, Charon identifies key aspects of narrative that contribute to our selfhood, including temporality, which provides

“those who live amid illness with the urgency and the patience to claim our numbered days and to see forward and backward toward their meaning” and emplotment, which we use “to make causal sense of random events or humbly acknowledge the contingent nature of events that have no cause, enabling us both to diagnose disease and to tolerate

133 the uncertainty that saturates illness.”14 These strict interpretations of the form of narrative conducive to selfhood limit the number or types of narrative that can be considered as contributing to identity.

Charon is conscious of the constructed nature of narrative; in fact, this is one of its positive attributes in the context of narrative medicine. An important function of fiction is to “force readers to recognise the storied shape of reality, to understand in the most basic way that there is no meaning outside of the plots into which one weaves the fragments of life, and that one must choose one’s plots. We make it up; in the most primal and primitive and primary way, we make it up.”15 Who we are is not something objectively determined through scientific knowledge nor through a story of selfhood; it is constructed and reconstructed through experience, reflection, and telling, and merged with cultural scripts. However, Charon makes this conscious editing a requirement rather than a possibility for enacting selfhood: “Telling and listening to stories are as organically necessary as are the circulation of blood or the respiration of oxygen to establish and maintain a self by metabolising into it that which is non-self and then contributing products of the self back into that alien domain, thereby making it home.”16 If stories are an “organically necessary” contributor to self, then the breakdown of story becomes a site for medical intervention. As pediatrician Perri Klass argues, “If stories make us human, a medical encounter that subtracts narrative might as well subtract liver, heart, and respiratory system.”17 Part of the difficulty in avoiding restrictive self-narratives that focus on concepts such as “health” and “cure” stems from the fact that unlike disability studies, which proffers a view of disability and illness as socially constructed rather than a pathological condition of the individual needing to be cured, narrative medicine

134 attempts to promote more comprehensive forms of care from within the medical system, with its established focus on diagnosis and treatment.

Physicians attempt to make meaning out of disjointed symptoms, writing a story of illness that Kleinman compares to the process of diagnosis.18 Diagnosis, however, implies a final conclusion, a sense of closure in the process of discovery. Klass, for example, says she views every person as a story, explaining that she starts “writing the endings” in her head when admitting a new patient. 19 If this is the view of narrative used to interpret patients’ lives, a framework used to return patients to a predetermined story of self through the “attribution of causality that demystifies the symptoms and signs and helps repair the breach in the patient’s narrative,”20 then the techniques of narrative medicine will be more limiting than they are expansive in actual medical use. As I have described, illness narratives often seek to smooth over rather than embrace discontinuities, fragmented perspectives, and chaotic experiences. Narrative

“symbolically corrects the disintegration or disorder represented by bodily illness.”21 This focus on narrative control, on “curing” the sickness represented by a faulty narrative, reads onto rather than with patients, potentially forcing them into scripts that do not best meet their needs. As Worthington notes, “Reading [of texts and selves as texts] is never apolitical or ‘irresponsible’; it is always a narrative activity of appropriation and control….As long as we continue to perform the interpretative acts which constitute all conceptual activity, we will continue to make the objects/characters/texts we apprehend into the ‘subjects’ of our interpretative narratives, dependent on our reading for their comprehended identity.”22 To avoid these dangers of oppressive narrative reading onto the patient, narrative medicine must continue to expand the range of methods it employs

135 by including disability studies perspectives. These tools will prevent what is at root a genuine goal of improving people’s lives from being overshadowed by a drive toward cure that may emphasize damaging narrative scripts.

There has been some work in narrative medicine that begins to acknowledge the importance of considering a diversity of texts. Bioethicist David Morris, for example, states that “narrative tellings are not necessarily verbal. Visual, musical, kinetic, and mixed-media forms of storytelling spin their familiar sagas from country songs and are- you-ready-for-some-football to The Nutcracker Suite. The body language that accompanies many spoken narratives is sometimes indispensable to full understanding.”23

Ultimately, however, the emphasis of narrative medicine is on the fact that “words matter,” and even if that expression is translated more generally to mean symbols, narrative medicine still looks for a very specific arrangement of those symbols for meaning-making. For example, an article reviewing the scope of the field of narrative medicine states that “for something to be labeled a narrative, it must stress sequence, causality, and even teleology. Through whatever media—linguistic, visual (static or dynamic)—narrative must place the represented phenomenon in a serially linked, temporally ordered chain, whose culminating end point is in a position to control what came before it.” As I have argued throughout this dissertation, this emphasis on linearity, teleology, and communication through language presents a limited toolbox for understanding selfhood through narrative.

Cognitive disability, as I have demonstrated, provides a particular challenge to caretakers who want to support or engage the selfhood of those who may have difficulty with narrative. Neurofiction, novels like those considered in this dissertation that feature

136 narrators or main characters with cognitive disabilities, provides one means of exploring the processes of selfhood and understanding the dangers of an overreliance on narrative theories of identity. Neurofiction may be particularly useful due to the fact that cognitive disability in fiction both estranges the reader yet enacts the process of self-making that many people struggle to perform in culturally acceptable ways. Marco Roth, editor of literary journal n+1, critiques the unusual cognition presented in these novels, claiming that in their specificity and therefore difference they frustrate a “readerly meaning impulse,” preventing the reader from identifying with the cognitively disabled characters.

What Roth fails to acknowledge, however, is that the frustration of interpretation serves to underscore the effort required by the constantly mediated process of narrative self- making in any person. These novels draw attention to the crucial fact that narrative is just as much about what is unknown as what is known and to the fact that narrative alone cannot adequately account for or convey the breadth of self-making processes that represent the variety of cognitive abilities.

Neurofiction is only one means by which to study the self in individuals with cognitive disabilities, however, and proponents of narrative medicine must take care to avoid an overly restrictive view of narrative that requires a predetermined linear form to be considered worthy of study. In particular, this interpretation of narrative, while certainly useful in many studies of identity, should not be taken to stand in for all selves, creating a goal of a linear, coherent story of identity that some people cannot accomplish.

Variability is inherent in the narrative form, which often includes features that may challenge its very definition. In order to better analyze the range of possibility for self- expression, narrative medicine programs could broaden their current curricular texts to

137 include more hybrid genres that avoid reliance on text alone but also incorporate image, movement, or sound to study the creation of self. Perhaps the emphasis of analysis should be on narrativity, or more broadly on the process rather than the categorization of expression. In Anne Basting’s storytelling work described in my introduction, for example, the telling and interacting is what becomes important for people with dementia, rather than any particular form or product. Other potential avenues of possibility might include comics, which avoid privileging the linear narrative of language, visually depicting the importance of components of self like embodiment, gesture, stillness, and social interactions. As I have attempted to show throughout this project, language may provide one means of understanding the interpretive processes we engage in every day as we interact with others. Taken uncritically, however, language may just as easily prove a barrier to connection, a means by which others are excluded as selfhood constructed through narrative becomes the only selfhood that is possible.

1 Rita Charon, cited in Holmgren et al., “Terminology and Praxis: Clarifying the Scope of Narrative in Medicine,” Literature and Medicine 29.2 (Fall 2011): 251. 2 Megan Alcauskas and Rita Charon, “Making a case for narrative medicine in neurology,” Neurology 70.11 (March 11, 2008). 3 Rita Charon and Sayantani DasGupta, “Editors’ Preface: Narrative Medicine, or a Sense of Story,” Literature and Medicine 29.2 (Fall 2011): viii. 4 Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford. University Press, 2006. 5 Fiona Kumari Campbell, “Medical Education and Disability Studies,” Journal of Medical Humanities 30 (2009): 222. 6 Ibid. 7 Alcauskas and Charon, “Making a Case,” 826. 8 David B. Morris, “Narrative Medicines: Challenge and Resistance,” The Permanente Journal 12.1 (2008): 94. 9 Lindsay Holmgren et al., “Terminology and Praxis: Clarifying the Scope of Narrative in Medicine,” Literature and Medicine 29.2 (Fall 2011): 254.

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10 Charon and DasGupta, “Editors’ Preface,” vii. 11 Ibid., ix. 12 Lynn Neary, "Story Specialists: Doctors who Write," "All Things Considered," National Public Radio, November 17, 2009. 13 Charon, Narrative Medicine, 3. 14 Ibid., 236. 15 Ibid., 212. 16 Ibid., 212. 17 Perri Klass, cited in David B. Morris, “Narrative Medicines: Challenge and Resistance,” The Permanente Journal 12.1 (2008). 18 Holmgren et al., “Terminology and Praxis,” 260. 19 Klass, cited in Morris, “Narrative Medicines.” 20 Holmgren et al., “Terminology and Praxis,” 254. 21 Ibid., 258. 22 Kim Worthington, Self as Narrative: Subjectivity and Community in Contemporary Fiction (Oxford University Press, USA, 1996), 251. 23 Morris, “Narrative Medicines.”

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VITA

Sarah E. Birge

Education

Ph.D. in English, Pennsylvania State University Expected August 2012 M.A. in English, Pennsylvania State University May 2005 B.A. in English and Biology, Austin College January 2002

Publications

“Brainhood, Selfhood, or ‘Meat with a Point of View’: The Value of Fiction for Neuroscientific Research and Neurological Medicine.” The Neuroscientific Turn: Transdisciplinarity in the Age of the Brain. Jenell Johnson and Melissa Littlefield, eds. Ann Arbor: University of Michigan Press, forthcoming summer 2012. “No Life Lessons Here: Comics, Autism, and Empathetic Scholarship.” Disability Studies Quarterly 30.1 (2010). Review of Art Spiegelman’s In the Shadow of No Towers. Journal of Medical Humanities 28.3 (2007): 181-183.

Selected Conference Presentations

“Wrong Bodies, Wrong Minds: Bodily Integrity as an Unstable Basis for Self.” Society for Literature, Science, and the Arts 25th Annual Conference. Kitchener, Ontario, September 22-25, 2011. “It’s not Brain Science (or is it?): The Influence of Contemporary Fiction on Neuroscience.” Society for Literature, Science, and the Arts 24th Annual Conference. Indianapolis, IN, October 28-31, 2010. “Reading Memory: Brain Damage and Selfhood in Umberto Eco’s The Mysterious Flame of Queen Loana.” Northeast Modern Language Association Convention. Boston, MA, February 2009. “Visual (Re)Narrations of Disability: Comics, Autism, and Human Rights.” Society for the Study of Narrative Literature, International Conference on Narrative. Austin, TX, May 2008.

Selected Awards

• Weiss Graduate Fellowship, Pennsylvania State University • Northeast Modern Language Association Graduate Caucus Essay Award • Rock Ethics Institute Dissertation Fellowship, Pennsylvania State University