The Work of Life Writing: Essays and Lectures [1 ed.] 0367620782, 9780367620783

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“The Work of Life Writing collects several of the most important essays of G. Thomas Couser’s exemplary career at the forefront of life writing scholarship. Reminding us that life writing deserves our attention for its social significance as much as its artistic strength, these dozen pieces treat the many varieties of life writing as unique literary forms that enact relationships and identities, especially under-represented ones. It was Couser who reminded us that memoir is our most democratic of genres, and who brought the study of life writing to bear on disability and illness representation—one of the most important shifts in literary disability study in the past twenty years. This is a book for students and scholars alike, and will appeal to anyone compelled by the important cultural work of auto/ biographical texts.” Susannah B. Mintz, Professor of English, Skidmore College “G. Thomas Couser is a central figure in the field of life writing. His lively and accessible prose enters into conversation with scholarship in a variety of fields, including disability studies, narrative medicine, pedagogy (literary studies, creative writing), cultural studies, and sociology. Readers will appreciate having some of his harder-to-find pieces, along with some of his best-known essays, collected in one volume. This book demonstrates the ways in which memoir and autobiography, even those forms that are unlikely to garner critical acclaim, should be taken seriously as forces with the potential to shape our everyday lives. I appreciate the personal touches in his writing—his work feels urgent because, as a reader, I have the opportunity to learn about the life experiences that inspired it.” Megan Brown, Professor of English, Drake University

The Work of Life Writing

Life writing, in its various forms, does work that other forms of expression do not; it bears on the world in a way distinct from imaginative genres like fiction, drama, and poetry; it acts in and on history in significant ways. Memoirs of illness and disability often seek to depathologize the conditions that they recount. Memoirs of parents by their children extend or alter relations forged initially face to face in the home. At a time when memoir and other forms of life writing are being produced and consumed in unprecedented numbers, this book reminds readers that memoir is not mainly a “literary” genre or mere entertainment. Similarly, letters are not merely epiphenomena of our “real lives.” Correspondence does not just serve to communicate; it enacts and sustains human relationships. Memoir matters, and there’s life in letters. All life writing arises of our daily lives and has distinctive impacts on them and the culture in which we live. G. Thomas Couser received his doctorate in American Civilization at Brown University in 1977. After teaching English at Connecticut College, he moved on to Hofstra University, where he founded and directed a Disability Studies Program. From his dissertation on, his scholarship has been concerned with autobiography and memoir, especially with life writing stimulated by disability and illness and the ethics of life writing.

Routledge Auto/Biography Studies Series Editor: Ricia A Chansky

Inscribed Identities: Life Writing as Self-Realization Joan Ramon Resina Research Methodologies for Auto/biography Studies Edited by Ashley Barnwell and Kate Douglas The Autobiography Effect Writing the Self in Post-Structuralist Theory Dennis Schep Multilingual Life Writing by French and Francophone Women Translingual Selves Natalie Edwards A Poetics of Arabic Autobiography Between Dissociation and Belonging Ariel M. Sheetrit Writing Life Writing Narrative, History, Autobiography Paul John Eakin The Birth and Death of the Author A Multi-Authored History of Authorship in Print Edited by Andrew J. Power Américanas, Autocracy, and Autobiographical Innovation Overwriting the Dictator Lisa Ortiz-Vilarelle The Work of Life Writing Essays and Lectures G. Thomas Couser For more information about this series, please visit: https://www.routledge.com/Routledge-Auto-Biography-Studies/book-series/AUTO

The Work of Life Writing Essays and Lectures G. Thomas Couser

First published 2021 by Routledge 52 Vanderbilt Avenue, New York, NY 10017 and by Routledge 2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 Taylor & Francis The right of G. Thomas Couser to be identified as author of this work has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging-in-Publication Data A catalog record for this book has been requested ISBN: 978-0-367-62078-3 (hbk) ISBN: 978-0-367-62081-3 (pbk) ISBN: 978-1-003-10784-2 (ebk) Typeset in Sabon by SPi Global, India

Contents

List of Illustrations Acknowledgements   1 Prologue: Death and Life Writing: Reflections on My Morbid Career

ix xi

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  2 Introduction: The Work of Memoir

10

  3 Quality-of-Life Writing: Illness, Disability, and Contemporary American Memoir

22

  4 Is There a Body in This Text? Embodiment in Graphic Somatography

35

  5 Genre Matters: Form, Force, and Filiation

62

  6 Memoir and (Lack of) Memory: Filial Narratives of Paternal Dementia

77

  7 Paper Orphans: Writers’ Children Write Their Lives

94

  8 Filiation in Barack Obama’s Dreams from My Father

113

  9 Disability, Depression, Diagnosis, and Harm: Reflections on Two Personal Scenarios

123

10 Vulnerable Subjects: Caveat Scriptor

139

11 The Shape of Death in American Autobiography

149

viii Contents

12 On “Freedom Writing”: Expression and Repression

162

13 Life in Letters: Letters as Life

170

Index

190

Illustrations

4.1 Al Davison, The Spiral Cage, Blind and Sighted Drawing. (Artwork © Copyright Al Davison-TAG! Reprinted by permission of Al Davison.) 4.2 “Graphic Continuum.” Excerpt from p. 29 from Understanding Comics by Scott McCloud. (Copyright © 1993, 1994 by Scott McCloud. Reprinted by permission of HarperCollins Publishers.) 4.3 “Cartoon as Vacuum.” Excerpt from p. 36 from Understanding Comics by Scott McCloud. (Copyright © 1993, 1994 by Scott McCloud. Reprinted by permission of HarperCollins Publishers.) 4.4 Eugene Richards, “After chemotherapy, Dorchester, Massachusetts, 1979” (© 1979 Eugene Richards, courtesy of the artist.) 4.5 “Chemo Nausea.” Excerpt from p. 34 from Cancer Made Me a Shallower Person by Miriam Engelberg. (Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.) 4.6 “Pre-surgery Breasts.” Excerpt from p. 97 from Cancer Made Me a Shallower Person by Miriam Engelberg. (Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.) 4.7 “Visible Tumors.” Excerpt from p. 107 from Cancer Made Me a Shallower Person by Miriam Engelberg. (Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.) 4.8 Brian Fies, Mom’s Cancer, “Told You So What.” Mom’s Cancer. (© 2006 Brian Fies.) 4.9 Julia Wertz, The Infinite Wait, Self-infantilization. (Reprinted by permission of Judith Wertz and Koyama Press.)

40

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43 45

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48 49 50

x Illustrations 4.10 Excerpts from Tangles: A Story about Alzheimer’s, My Mother, and Me. (Copyright (©) 2010 by Sarah Leavitt. Used with the permission of Freehand Books [Calgary, AB] and Skyhorse Publishing [US], and by permission of Samantha Haywood [international].) 52 4.11 Al Davison, The Spiral Cage, Realistic Nude Selfportrait. (Artwork ©️ Copyright Al Davison-TAG! Reprinted by permission of Al Davison.) 54 4.12 Judith Vanistendael, When David Lost His Voice, Diagnostic Sketch. (Reprinted by permission of Judith Vanistendael.) 55 4.13 Judith Vanistendael, When David Lost His Voice, Diagnostic Interview. (Reprinted by permission of Judith Vanistendael.) 56 4.14 Judith Vanistendael, When David Lost His Voice, Subjective Reaction. (Reprinted by permission of Judith Vanistendael.) 57 4.15 Judith Vanistendael, When David Lost His Voice, Therapeutic Regimen. (Reprinted by permission of Judith Vanistendael.) 58 13.1 My father’s Wesleyan College yearbook photo, 1927 171 13.2 Letter of recommendation for Isaac Couser from Bessbrook Spinning Company, 1910 172 13.3 Rosalind Parker Manchester Central High School yearbook photo, 1923 174 13.4 Note to Dad from Rody 175 13.5 Hand-drawn Map of Aleppo 177 13.6 Wedding day photo of my parents, August 1941 180 13.7 Letter from Theodore Nutting to his mother and sister, 1863 181 13.8 Dad on Navy ship in PTO, 1945 185

Acknowledgements

For a book like this, coming at the end of my career and surely my last, acknowledgments must be especially capacious and inevitably incomplete: so many colleagues and friends have assisted and encouraged me for so many years. But here’s at least a partial list of those whom I wish to thank, in no particular order: the late James M Cox, for interesting me in autobiography when I was still an undergraduate at Dartmouth College; John Eakin, for the example of his work and for opportunities to speak at Indiana University; Susan Merrill Squier and Irmela Marei Krüger-Fürhoff for inviting me speak at “PathoGraphics” in Berlin; Neil Vickers and Brian Hurwitz for the opportunity to deliver “Quality-of-life Writing” at Kings College, London; Craig Howes for welcoming my work at Biography; Becky Hogan and Joe Hogan for nurturing a/b: Auto/Biography Studies for so many years; Ricia Chansky Sancinito and Emily Hipchen for continuing to develop that journal (and more); Maureen Perkins for welcoming my work at Life Writing; Julia Watson for the nudge that led me to propose this collection; Stephen Mansfield for his interest in my work on patriography; Sarah Brophy for her skillful editing of “Is There a Body in This Text?”; Willard Spiegelman, for welcoming “Freedom Writing” at Southwest Review; my Hofstra colleagues Lee Zimmerman and John Bryant for their supportive friendship; Megan Coyer, for the invitation to deliver “Vulnerable Subjects” at Glasgow University; Mel and Cindy Yoken, for inviting me to deliver “Life in Letters: Letters as Life” at Brown University; Sophie Vallas and Claire Sorin, for the invitation to write “Death and Life Writing: Reflections on My Morbid Career”; Rosemarie-Garland Thomson, for welcoming me into the field of Disability Studies in mid-career; Susannah Mintz, for collaboration and counsel. Reaching much further back, I am indebted to my parents, Ann Van Stelten and William Griffith Couser, both public school English teachers, for encouraging my interest in reading when I was a child and adolescent. And reaching back through half of my life, Barbara Zabel for sharing and shaping it into a fulfilling existence.

1 Prologue: Death and Life Writing Reflections on My Morbid Career*

The editors of this special issue honored me greatly by citing early work of mine in their call for papers: “The Embodied Self,” my introduction to a 1991 special issue of a/b: Auto/Biography Studies on “Illness, Disability, and Lifewriting”; and “The Shape of Death in American Autobiography,” which appeared in the Hudson Review in 1978.1 Their doing so has prompted me to reflect on my long-term interest in the complex relations between life writing and death. When I published the Hudson Review essay, I was in my early thirties, a recently minted PhD in American Studies and a beginning professor of English. The essay grew out of my dissertation, American Autobiography: The Prophetic Mode, which traced a distinctive mode of autobiography from the Puritans to (then) contemporary life writers like Norman Mailer and Malcolm X. Although it discussed many of the same texts as the dissertation, the essay’s focus was different; it explored the vexed relation between the limits of autobiography as a form of life writing and the limits of life itself—i.e., a relation between a medium and mortality. The sole distinction, by definition, between (allo)biography and autobiography is that the former can be written by anyone other than the subject, while the latter is written only by the subject. That distinction entails another: autobiography is inherently incomplete. No matter how long or comprehensive, an autobiography can never contain the whole chronological extent of a life: it cannot include the death of its subject, much less conclude with it, as biography often does. But the fact that autobiography cannot “contain” the death of the author literally, as its final event, does not mean that it is not shaped by death—not “about” the death of the subject in some way. Indeed, one might argue that thoughtful, reflective autobiography (or memoir) is often haunted, even impelled, by the authors’ awareness of the * This essay served as a foreword to a special issue of Revue Electronique d’études sur le monde anglophone in 2017: “Narratives of the (Un)self: American Autothanatographers, 17th–21st Centuries.” Reprinted here by permission.

2  Prologue: Death and Life Writing inevitability of their own deaths and of the genre’s inherent incompleteness. Even when it is not written in the expectation of imminent demise, then, it may be written in the (fore)shadow of death. To demonstrate this in my essay, I explored ways in which a selection of well-known American writers—Jonathan Edwards, John Woolman, Benjamin Franklin, Henry Thoreau, Walt Whitman, Henry Adams, and Malcolm X—addressed their own deaths in one fashion or another in their life writing: rehearsing it (as Edwards did, by seeking to be “swallowed up in God”), substituting for it (as Woolman did, by using the death of another Friend to stand in for his own), embracing it (as Franklin did, by playfully characterizing writing his life as re-living it), transcending it (as Thoreau and Whitman did, by dissolving themselves in nature and others, respectively), pre-empting it (as Adams did, by narrating his story in the third person as history), and memorializing himself (as Malcolm X did, by accelerating his narrative to register a Muslim persona to survive him). To probe beneath the surface of a serious autobiography, I argued, is to expose the author’s recognition of mortality. As I wrote at the time, Many classic American autobiographies betray the pressure of a profound concern with death. The expectation of death may impel the writer, as though the composition of an autobiography might help him to compose himself in the face of death. Or he may hope that the finished narrative will endow him with a kind of immortality. More importantly, the form and content of the narratives are often significantly shaped by the writer’s preoccupation with death, even though the event itself eludes direct treatment. Two problems overlap here in an interesting way. As a mortal, the writer may seek to come to terms with death. As an autobiographer, he may want to write a conclusion which, in its finality and significance, will somehow be equivalent to his own death. (Couser, “The Shape of Death,” 53) Rather than reexamining those texts further here, I wish to reflect on the preoccupation with death that seems to pervade my academic writing. The origin of this preoccupation is not far to seek, and I was certainly aware of it when I composed my Hudson Review essay; what remained obscure to me for a long time was its lasting effect. Looking back now, however, I can see that my scholarly corpus (pun intended) may seem quite morbid. And I am struck by the fact that over the course of my career, without setting out to do so, I have explored how a number of lifewriting genres stand in different relations to death and thus offer quite different responses to what may be the most important of the so-called “facts of life”—that we all die.

Prologue: Death and Life Writing  3 The genesis of this morbidity was the successive deaths of my parents in a short period of time: my mother’s, in the fall of 1974; my father’s, the following spring. I was in my late twenties. My mother had survived breast cancer in her fifties only to be diagnosed ten years later with the ovarian cancer that took her life within a year. Though far from painless, her dying was a gradual, graceful decline during which the family had time to say our goodbyes and to grieve in advance. My father’s dying was of a different order. He had become deeply and chronically depressed in his early sixties; one way he coped was to drink secretly and self-destructively—behavior that is known, euphemistically and paradoxically, as “self-medicating.” No treatment, not even electroshock administered at Boston’s acclaimed McLean Hospital, alleviated his pain. His death was the shocking, but not surprising, denouement to his binges. I found the circumstances of his death not only distressing but shameful. As far as I knew, his drinking had been a closely held secret: how was I to explain to extended family, colleagues, and friends the seemingly sudden death of an otherwise fit and youthful sixty-nine-year old? More than distress and shame, I felt some responsibility—I lived not far away and thought I should have interceded. Worse, I felt guilty: I feared that a frank letter I had written him as an epistolary “intervention” had sent him into a downward spiral. He had told my mother that if I ever found out about his drinking, it would “destroy” him. I did find out; I confronted him, and our relationship was never the same. Clearing out my family home after my father’s death, I discovered a cache, a trove, of documents stored in a closet behind his bed; mostly personal correspondence from friends and romantic partners, they shed light on aspects of his life that I had not been aware of—e.g., he had romantic friendships with several gay male friends—or gave me intimate access to aspects of his life of which I had been aware, like his service in the Navy during World War II and a stint as a missionary-teacher in Aleppo, Syria, in the 1930s. This discovery, a consequence of my father’s death, gave me unexpected posthumous access to his life, through his and others’ life writing. (The archive, an accumulation of documents, some official—marriage licenses and passports—most not, itself constitutes an ill-defined “genre” of life writing—not quite a scrapbook but a consciously chosen and retained set of documents.) At the time, I was too traumatized by his death to explore them in depth; I was not ready to plunge into his life at the time. I sorted them, boxed them, and stored them, knowing that the time would come for me to reckon with them. In the next academic year I wrote my dissertation, which gave rise in turn to my essay. Occurring just at the outset of my career as a scholar of life writing, then, my parents’ deaths, particularly my father’s, profoundly affected my approach to life writing, first by prompting my thoughts on “the shape of death” in American autobiography. For the next decade, however, the only evidence of a thanatological orientation in my work

4  Prologue: Death and Life Writing was the Hudson Review essay. That changed in the early 1990s, when I began to focus on the representation of embodiment in contemporary life writing. On the conscious level, this turn was a response to an upsurge in memoirs of illness and disability, which foregrounded the body. No one I knew of was studying this phenomenon, and I set out to do so primarily (or so I thought) out of intellectual curiosity: what does it mean that this kind of life writing is appearing now? What are its sources, its implications? If I had been asked at the time, then, whether this turn to pathology and pathography had a source in my own family, I would have denied it. This despite that the fact that my mother’s diabetic sister had died of insulin shock in her thirties, when I was a child, causing my parents to take in her daughter temporarily; this despite the fact that my father’s mother had been an invalid, due to Parkinson’s disease, nearly as long as I knew her; this despite the fact that my mother needed to use a wheelchair during her terminal illness; this despite the fact that both my father and my sister had been hospitalized for depression. And this despite the fact that my wife and I had recently failed to conceive a child through in-vitro fertilization. I was deep in denial of the pathology permeating my immediate family. That was largely, I suppose, a matter of categorizing and of resisting stigma: I didn’t think of these conditions as disabilities or think of these people as “other.” One of the somatic conditions I focused on in Recovering Bodies: Illness, Disability, and Life Writing (1997) was breast cancer, to which I devoted a long chapter: “Self-Reconstruction: Personal Narratives of Breast Cancer.” Such narratives are always written in the shadow of death—most obviously, those by bereaved partners, or children: these are posthumous and elegiac. But even those written by “survivors” are informed by a sense of mortality. After all, survival (really, remission) is defined by years without recurrence; it is never definitive—until the survivor dies of something else. So survivors write in the knowledge that the disease may return to claim them. When writing that chapter, I was certainly aware of my personal stake in the topic: my mother had had a radical mastectomy in the 1960s, when it was unheard of for a woman to narrate her illness experience, and a cousin to whom I was quite close died of breast cancer in 1990. The only explicit acknowledgment of this in the book was its dedication to my dead cousin. I suppressed my own sense of involvement and loss, but I was evidently engaged by the contemporary expression of a story that had gone untold in my own family. In America in the 1990s, the HIV/AIDS epidemic was a major stimulus to thanatological life. No one I was very close to had had AIDS, and I was not at risk; I had no personal stake in the topic. But the epidemic inevitably manifested itself in life writing, as well as in more literary genres, and I devoted a chapter of Recovering Bodies to “HIV/AIDS and its Stories.” The

Prologue: Death and Life Writing  5 course of the epidemic can be traced in the succession of life-writing genres that registered it. First, there was the obituary, one of the most common and widely read of life-writing genres. In the Anglophone world, obituaries typically provide the age at, and cause of, death up front. In the case of closeted gay men, however, to name AIDS as their cause of death would have been to out them, which survivors and news media were reluctant to do. As a result, early in the epidemic, AIDS was often concealed under the vague rubric “a long illness.” That changed, of course, and the outing of many gay men by AIDS had a significant impact on public awareness of both homosexuality and AIDS. Thus, a most commonplace life-writing genre played a role in the gay rights movement. Other life-writing genres also registered the epidemic. Early on, when AIDS was not survivable, first-person narratives were limited to the diary (and there were not many of those) and the memoir by a grieving relative or partner. Eventually, however, new treatments made possible firstperson narratives by survivors. With AIDS, as with breast cancer, then, autopathography played a powerful role in a minority rights movement. Prompted by death, or by life-threatening illness, memoir was revitalized by marginalized groups. So death by disease powerfully shaped American life writing in the last decades of the twentieth century. My interest in “vulnerable subjects” led me to scrutinize other genres of life narrative. Vulnerable subjects are individuals who are liable to harmful representation to which they are unable to respond. For the most part, these are people with disabilities that prevent or impede selfrepresentation—such as severely autistic children, whose parents may represent them in memoir; or parents with dementia, whose children may assume authority over their life narratives. But my concern with vulnerable subjects prompted a critique of another type of life writing, narratives of assisted suicide, which is illegal in most of the United States and controversial throughout the States. These are typically written by family members who accept the decisions of their loved ones to end their lives and may even have collaborated or assisted in the suicides. As a result, such narratives belong to the genre of the apologia: they defend and justify an act or course of action taken by the author. In chapter 6 of Vulnerable Subjects, “Life Writing as Death Writing: Disability and Euthanography,” my objection is not to assisted suicide as such. Rather, what I find problematic about the narratives is the message of the medium: that death is better than disability. While these narratives honor choices of the deceased, they are inimical to the interests of people with serious disabilities, a very vulnerable population, by reinforcing the all-too-common assumption that they’d be better off dead. As assisted suicide gains more adherents and becomes legal in some jurisdictions, the significance of such narratives is all the greater. In my estimation, the dead also qualify as vulnerable subjects; they are susceptible to harm insofar as they have an interest in their posthumous

6  Prologue: Death and Life Writing legacies. A case in point is the New York Times obituary of Lucy Grealy, author of Autobiography of a Face, an account of growing up with a face disfigured by treatment for Ewing’s sarcoma. Grealy died in 2002 of a heroin overdose, a cause of death that is often elided or disguised behind the phrase “died unexpectedly” or hinted at by reference to “a struggle with addiction.” Instead of either formulation, the Times obituary stated that Grealy had “died at a friend’s house. . . . She was 39. No cause of death was announced. Friends said she had been despondent over operations she underwent two years ago” (Lehmann-Haupt B7). Presumably, the editors thought they were doing her and her family a favor by not mentioning the cause of death. But by linking her death at such a young age to despondency over cosmetic surgeries, the obituary hints at suicide (another stigmatized and often concealed cause of death) impelled by shame about her appearance. In the U.S. today there is a trend toward candor about deaths by overdose, in the face of an epidemic of opioid abuse, and by suicide, at a time of troubling frequency among young and middle-aged people (so-called “deaths of despair”). Absent a suicide note, deaths by overdose are inherently ambiguous: unless the dosage is grossly excessive, it is impossible to know whether it was intended to kill. In Grealy’s case, she had resumed using heroin after a period of abstinence; at such times, it is common for users to overestimate their tolerance, so her death was almost certainly an accident. Although Grealy was in some sense a public figure, by virtue of the success of her memoir, the cause of her death is not really a matter of public interest. In this case, however, editorial media restraint about her drug use led to the implication of suicide. This is highly problematic because it conflicts with the thrust of her autobiography, which was that Grealy had come to terms with her face. That is not to say that she was content with her appearance—hence the repeated operations—but rather that she did not consider it a measure of her worth. In “Lucy Grealy and the Some Body Obituary” (chapter 8 of Signifying Bodies), I argued that her obituary overwrote her self-authored narrative when she had no opportunity to respond. In writing her death the way it did, the obituary contradicted her own “life.” The issue is larger than Grealy. Harriet McBryde Johnson, a disabled lawyer, activist, and advocate, suffered a similar injury. She had publicly debated the utilitarian philosopher Peter Singer, challenging his view that it is permissible for parents to kill a disabled infant, and in her memoir Too Old to Die Young, she had written lyrically of the special pleasures of her disabled life—for example, being bathed by her care-giver. Yet when she died, the New York Times commissioned Singer to write her obituary, which was titled “Happy Nevertheless.” As Elizabeth Barnes points out, in The Minority Body, “McBryde went to great lengths . . . during her life to explain that she was not happy nevertheless. She was just happy, like so many other flourishing disabled people. But she wasn’t

Prologue: Death and Life Writing  7 believed just as she predicted—in the very same paper—she wouldn’t be believed” (Barnes 138). Barnes refers to this conventional discounting of disabled individuals’ claims of good quality of life as a form of “testimonial injustice.” It is exacerbated in the case of obituaries: as post-mortem life-writing, obituaries are always at risk of violating the principles and values of those they presume to honor. Like the obituary, another thanatological life writing subgenre has been mostly overlooked by academics. This last death-related genre is far less common (thankfully) than the death notice, and it rarely appears in print. I am referring to the suicide note—the ultimate form, I suppose, of autothanatography and the closest that autobiography comes to including the death of the author. Like the narrative of assisted suicide, the suicide note defends and justifies the act; it, too, constitutes an apologia. Unlike the assisted-suicide narrative, however, the suicide note may also function as an apology to survivors, such as family and friends—expressing regret for causing them pain. Here again, life writing, understood inclusively, contains an overlooked subgenre focused on the death of its author. I can’t claim to have studied this subgenre. But I have some personal experience with an instance of it. When my father died, in addition to cache of documents I discovered in his closet, I found a number of notes written on scraps of paper scattered around the house. When I finally worked up the courage, thirty years after he died, to review the documents and use them as the basis for a memoir, these texts were most resistant to interpretation. They were obviously written by my father; his handwriting is unmistakable. But unlike the correspondence in his closet, they lack any addressee: evidently he wrote them to and for himself alone. They were undated and so sketchy in their references that I cannot construct a sequence out of them, the way I can with his letters. Some consist only of lists—for example, of people he had admired; others contain quotations he found comforting. So they defy incorporation in a narrative. But they are distinctly autothanatological in two senses—or directions: some look backward, reflecting on my mother’s recent death; others look forward, reflecting on my father’s anticipated demise. There is no single “suicide note” here. But I read the scraps collectively as notes toward a suicide— an expression of what I describe as a slow-motion suicide with plausible deniability. That is, the notes confirm to me that my father knew that his drinking would end his life and he had resigned himself to that outcome, without quite admitting that he was actively committing suicide—not because he considered it a sin, but because it would have amounted to giving up. Reading them as acknowledging his desire to die makes them painful for me to read. But there is some comfort in them, as well: insofar as he takes some responsibility for his death, he absolves me of my own responsibility, my guilt. My work, as reviewed here, has touched repeatedly, perhaps obsessively, on death; it would appear that my career has indeed been morbid.

8  Prologue: Death and Life Writing Though I never intended to focus on mortality, I cannot deny that there is a mortiferous thread running through my work. But there is another way to understand this preoccupation with death, other than as a way of my working through personal issues by intellectualizing: as a function of a more conscious concern for what I call the “work” of life writing. I address this most explicitly in “The Work of Memoir,” the final chapter of my last book, Memoir: An Introduction. The notion of “the work” of life writing has to do with my sense that, as non-fiction, life writing has a different relation to reality than fiction. I like to say that it exerts a kind of leverage, or traction, on the world that fiction lacks. Americanists who study life writing may be particularly attuned to work it does because of the importance of genres like the slave narrative in our literary tradition and our history. The project of slave narrative was simply to bring about the abolition of slavery. Once that “work” was done after the Civil War, the genre lost its raison d’être and dwindled to extinction, even though, ironically, all ex-slaves were at liberty to write their stories: the genre’s fulfillment was also its own annihilation. But life writing has continued to perform important cultural and political work. Although narratives of breast cancer and of HIV/AIDS illnesses were prompted in part by the authors’ awareness of mortality, they also were concerned with practices that marginalized women and gay people, respectively. Most, then, constitute what we call counterdiscourse, and collectively these narratives helped to destigmatize the illnesses that provoked them. Memoirs have also been vital to other rights movements, such as the Civil Rights movement and the Disability Rights movements. Much, if not all, of my death-related work, then, can also be looked at in terms of the work that the life writing does—from “prophecy” in my dissertation, to defying death (in “The Shape of Death”), to harming the dead (in the case of Grealy’s obituary), and reinforcing ableism (in the case of euthanography). It is not always the case, then, that I endorse the work of life writing. But I have long been arguing convinced that it is crucial to understand what American life writing is doing. Often, and ideally, it is advocating for minority rights and human rights more generally.

Note 1 It appears in this volume as Chapter 11.

Bibliography Barnes, Elizabeth. The Minority Body: A Theory of Disability. Oxford: Oxford University Press, 2016. Print. Couser, G. Thomas. “The Shape of Death in American Autobiography.” The Hudson Review 31(1), Spring 1978: 53–66. Print.

Prologue: Death and Life Writing  9 Couser, G. Thomas. American Autobiography: The Prophetic Mode. Amherst: University of Massachusetts Press, 1979. Print. Couser, G. Thomas. “Introduction: The Embodied Self.” Special Issue. “Illness, Disability, and Life-Writing.” a/b: Auto/Biography Studies 6(1), Spring 1991: 1–7. Print. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Print. Couser, G. Thomas. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press, 2004. Print. Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009. Print. Couser, G. Thomas. Memoir: An Introduction. New York: Oxford University Press, 2012. Print. Lehmann-Haupt, Christopher. “Lucy Grealy, 39, Who Wrote a Memoir on Her Disfigurement.” New York Times, 21 December 2002, B7. Print. Singer, Peter. “Happy Nevertheless.” New York Times Magazine, 24 December 2008, 34. Print.

2 Introduction The Work of Memoir*

In 2011, approaching my last sabbatical before the big sabbatical (my retirement), I noticed a number of books being published—by prestigious trade presses—with titles like How Fiction Works (Wood), How Novels Work (Mullan), How to Read Novels Like a Professor (Foster)—and I found myself wondering why no one had written a similar book on memoir. After all, memoir was supposedly the hot genre. According to various cultural commentators—critics, scholars, and reviewers—this was an age, if not the age, of memoir. Memoir had eclipsed autobiography as the term of choice for a certain kind of life narrative. More significantly, memoir rivaled fiction in popularity and critical esteem and exceeded it in cultural currency. As evidence, consider this statistic: “According to Neilsen BookScan . . . between 2004 and 2008, total sales in the categories of personal memoirs, childhood memoirs, and Parental Memoirs increased more than 400 percent” (Yagoda 7). That was phenomenal growth, and I suspect the trend has continued. Now, I suspect that nearly everyone who buys a book with a title like “how to read a novel like a professor” has already been shown how to read fiction by a professor—or at least a high school teacher—whereas nearly none of them has been taught how to read memoir. Because until recently, memoir didn’t get much respect as a literary genre. So after thinking that someone should write such a book, I decided to take advantage of my leave to do it myself. And I did. If I could have gotten away with it, I’d have called it Memoir for Dummies. But that domain name, so to speak, was not available to me. I thought of calling it Memoir: A User’s Manual, where “user” refers to writers as well as readers. But my publisher, Oxford University Press, preferred the more academic-sounding Memoir: An Introduction. So be it. My talk today is not “from” the book, exactly. That is, little of it actually appears in it. Rather, it’s an attempt to explain why the culminating chapter has the title, “The Work of Memoir.” What’s up with that? * I gave this talk as a Distinguished Faculty Lecture at Hofstra in 2011. In the years since I have given variants of it under the title “Why Memoir Matters.”

Introduction  11 My two key words, work and memoir, are familiar to all of you. But I’ll need to define both in the sense that I use them in order to elucidate what I see as the distinctive relation between them. Memoir first. Such a common word these days, and yet I admit that I have written a whole (if short) book about a genre I cannot easily and simply define. The problem—however—does not lie with me. Oh, no. The problem never lies with me. (Ask my wife.) Rather, the problem lies in the term’s history and its inconsistent and confusing usage. For one thing, the term is used in both the singular and the plural to refer to a single text: so “my memoirs” can denote one book, whereas “my novels” would necessarily refer to more than one. Consider, too, that in French the term has been both masculine and feminine in gender. We’re dealing, apparently, with something that is indeterminate in number and in gender. More to the point, though, the term has distinct meanings that actually conflict. We make a sharp distinction between autobiography and biography, as follows: Autobiography is about its author, whereas biography is about someone else. Seems clear enough. But if you look up memoir in a standard dictionary—I mean, not a dictionary of literary terms—you’ll find definitions like these, from the American Heritage Dictionary: . An account of the personal experiences of the author. 1 2. An autobiography. [Pretty much the same as (1), wouldn’t you say? Seems redundant rather than inconsistent.] 3. A biography or biographical sketch. [Whoops!] According to the dictionary, then, memoir is either two distinct things, or it’s one indistinct thing that straddles the line between autobiography and biography. There’s just no getting around the fact that one of my key terms can refer either to a species of autobiography or a species of biography. But what kind of each? That’s not so easy to say, either. According to some dictionaries, when memoir refers to a species of autobiography, it denotes a relatively objective account of the author’s experiences. Tell that to James Frey, whose “memoir,” A Million Little Pieces, was discovered to be quite unreliable, full of self-aggrandizing exaggerations. (He extended a stay of a few hours in jail to one of several months—hardly a rounding error.) Now, I wish—I really do—that I could resolve all of these contradictions for you—between the masculine and feminine, the plural and the singular, the objective and the subjective, the biographical and the autobiographical senses of memoir. My life as a scholar and teacher would be much simpler. But I can’t. But again, it’s not my fault. What I can do is to remind you that the term’s root is French for memory. Therein lies a helpful mnemonic. (That’s Greek for memory.) If we think of memoir, then, as memory writing, the term’s ambiguity may be less troubling. So while you can write a biography of anyone, living

12 Introduction or dead, you can only write a memoir of someone you’ve known and remember. And, similarly, one way to think about memoir as a species of autobiography is to think of it as relying primarily on memory rather than, say, documents or research. Since memory is a notoriously selective and fallible faculty—and in my case, becoming more so with each passing day—I think it’s helpful to think of memoir as subjective life writing, whether about the author, about someone known to the author, or about the relationship between them. That’s the best I can do for now. Before I address the relationship between memoir and work, however, I need to place memoir in a larger context—that of what we in the field call “life writing.” Unfortunately, “life writing” is another problematic term. When I meet strangers socially and they ask what I do for a living, I sometimes admit to being an English professor. When I do, a common follow-up is, “What’s your specialty?” If I respond, “life writing,” I am almost always met by blank stares. So I’m not going to assume that you all are familiar with this term, which has only recently become the standard designation for what I have been studying since the 1970s. Before I attempt to define it, let me list some things that constitute it, and you’ll see the problem. My colleagues in the field and I consider all of the following to count as life writing: autobiography, biography, and memoir, including graphic memoirs like Maus (Spiegelman), Fun Home (Bechdel), and Persepolis (Satrapi); diaries, journals, and letters; biopics and bio-dramas—that is, movies and plays about real people, like The King’s Speech; documentary films about individuals or groups of people, like the recent Babies and Restrepo; birth announcements, marriage announcements, death notices and obituaries; college application essays, personal ads, and résumés; scrapbooks (I hadn’t thought of the scrapbook as a life-writing genre until a cousin of mine brought to a family reunion the first three of ten bound volumes of his scrapbook, grandly entitled “The Life and Times of William G. Couser”); personal anecdotes and family stories—of which I just gave you an example; family albums and home movies; magazines like People and Us; the NPR radio show This American Life, hosted by Ira Glass; StoryCorps©; anything shown on the Biography channel, much of what is shown on the Discovery Health channel, shows like Big World, Little People (TLC), Hoarders (A&E), and Biggest Loser (NBC);

Introduction  13 personal email; tweets; Facebook pages; last but not least, gossip—the original social medium. This list is not exhaustive. It cannot be exhaustive. New forms are springing up all over. After a recent talk, I was asked if there was any musical life writing. At the time, I couldn’t think of any. But I was recently reminded that the 1975 Maysles brothers documentary Grey Gardens was adapted into a musical play in 2006. Voila: the bio-musical. I trust my list demonstrates why the term life writing is problematic. Some of my items—like memoir—are literary genres; most are not. Some are written for publication; others, like diaries and letters, are not. Some, like photo albums, are not even written. So I prefer the more inclusive term life narrative. But even that is too restrictive; portraiture, which is not really narrative, is now considered life writing. Life narrative is not even limited to human subjects: Seabiscuit (Hillenbrand), a biography of the celebrated race horse, and Marley and Me (Grogan), a memoir of a bad dog, are both considered life writing. In fact, memoirs of pets are currently multiplying like . . . gerbils. So what we call life writing we should really call life representation. Whichever term we use, it denotes anything that represents the identity of actual (usually human) beings. The key criterion is that the subjects are not invented. I make this point emphatically early on in the book, and I quote: “Memoir is not fiction. Memoirs are not novels.” This is the premise of my book. It’s not my thesis, because I don’t intend to argue it. I consider it to be true by definition. But it’s my point of departure. One reason I start there is that so many of my students— even bright, serious students—will casually refer to memoirs as “novels.” Which they are not. In my life-writing classes, novel is the other N-word, never to be used to refer to the texts under discussion. To repeat, as a nonfiction genre, memoir depicts the lives of real, not imagined, individuals. But the line between fiction and nonfiction, novel and memoir, is sometimes fuzzy, and it is sometimes purposely crossed. One issue is what counts as “reality.” For example, there are in print a number of memoirs of alien abduction, and there are at least two memoirs in bookstores today recounting visits to heaven and back. We should not be taken aback at this. For the memoir as we know it developed in tandem with the novel; in English, at least, the two genres have enjoyed a symbiotic relationship for some two hundred years. And they remain intertwined. Today memoirs often incorporate invented or enhanced material, and they often use novelistic techniques. Indeed, they are themselves a form of literary art, and their artifactuality—the sometimes uneasy relation between their artfulness and their presumed factuality— sometimes gets their authors into trouble. (Again, James Frey.)

14 Introduction Conversely, novels often take the form of memoirs. In practice, it’s not always easy to tell whether a particular narrative is realistic fiction or memoir; there is no bright line between them. And of course, sometimes fiction masquerades as—pretends to be—nonfiction. Loosely speaking, both the novel and the memoir are “mimetic.” That is, they imitate life in the sense that art is said to imitate nature. Nevertheless, an important conceptual distinction obtains: memoir “presents”—and is therefore read—as a nonfictional record or re-presentation of actual humans’ experience. Fiction does not; it creates its own lifelike reality. And that makes all the difference. Memoir’s commitment to the real doesn’t just limit its content (what it can be about); it also limits its narrative techniques (how the content can be presented). Thus, narrative omniscience is generally not found in memoir. The rootedness of memoir in reality has ethical consequences, too. The ethical obligations of the novel are few: not to plagiarize, and not to libel. In contrast, the memoirist has complex ethical obligations: to the historical record and, more important, to collaborators or subjects who are represented in the text. This special relation to the real affects what memoir can do, too, not just what it is. In short, this distinction is fundamental both for how memoir works (the craft of it) and for the work it does. What I mean by the work of memoir, then, is not work as in “the work of art”—meaning the product of the writer’s labor, nor that labor itself. Rather, it is work in the sense of an act or deed, the effect of an agent or agency—the impact of memoir on the world. When I discuss this, I find myself resorting to physical metaphors, like leverage and traction. The reason that I deferred the matter of work until I had placed memoir in the larger category of what we call life writing is this: while memoir and realistic fiction are often so similar as to be indistinguishable on the basis of internal evidence, memoir—unlike the novel—is the literary form of something (life writing) that, in modern Western culture at least, most people are immersed in much of their lives. We write our lives—or they are written for us—from birth to death and in some cases beyond. Along the way, we produce, consume, or are represented in many of the forms of life writing that I listed earlier. Facebook has more than half a billion members worldwide; more than half of these members log in every day. Twitter allows individuals to follow others’ lives in real time. Or so I’m told. I’m a Facebook and Twitter virgin. The media and the genres available to us are proliferating faster than I, at least, can keep up. Life writing is not just some discrete thing(s) we do; it is a good part of what defines us—how we become persons, develop and maintain our identities. We live our lives by representing them. We grow up embedded in, and inscribed by, a whole range of life-writing practices. And we do so in more and more ways.

Introduction  15 So I would argue that the most significant thing that distinguishes memoir from the novel is precisely this: memoir is the literary (or the most literary) manifestation of a much larger set of practices that are quite common—indeed, virtually unavoidable—in our daily lives today. We are all sentenced for life, you might say. Have you seen the bumper sticker that proclaims, “No Farms, No Food”? I’m tempted to make one up that says, “No Life Writing, No Life.” Having set memoir in this much larger context, I want to approach the notion of the work of contemporary memoir with reference to some earlier life-writing genres. I come to the study of memoir as an Americanist. My doctorate is in American studies, rather than English, and I often feel somewhat odd identifying myself as an “English professor.” It’s true that I am a member of an “English Department,” but I’m not English and I don’t teach British literature. I’m an American professor of American literature. And the American back story of contemporary memoir is very different from its British counterpart. In Britain, in the eighteenth century, the novel and the memoir emerged and developed side by side. I like to say that they grew up like siblings constantly borrowing each other’s clothes—to the extent that they were sometimes hard to tell apart. Eighteenth-century British fiction not only resembled memoir—true life stories; it was often presented as if it was such. On this side of the Atlantic, the novel developed much later for various reasons. As a result, if you examine an anthology of pre-Revolutionary American literature, most of what you find is what we now call life writing. There are narratives of exploration—firsthand accounts of voyages sent back to Europe to encourage further exploration and settlement; subsequently and consequently, there are narratives of settlement, like William Bradford’s Of Plimoth Plantation; subsequently and consequently, there are narratives of Indian captivity. In New England, Puritanism produced lots of conversion narratives. In areas colonized by the Spanish, there are eyewitness accounts of the ruthless conquest and exploitation of the natives. And so on. By comparison with seventeenth- and eighteenth-century British literature, much of this doesn’t look very literary; there is no drama, no fiction. And most of it, by later standards, is not “literature”—that is, it’s not “imaginative” writing. By the standards of the day, however, it was literature. More to the point here, it was doing important and necessary work. Most of these life-writing genres are utilitarian and instrumental. They are written to have a relatively direct effect on the world. Most advance the project of colonizing the New World; some resist it. Either way, they were not written for aesthetic ends but for practical ones. These genres grow out of distinctive conditions of colonial life. And each is dedicated to one task. Some, like the conversion narrative, are built into particular institutions; for a time American Puritanism required aspiring church members to present a compelling narrative of

16 Introduction their conversion. It was a way of preserving the sanctity of the sacrament of communion. To move on to the nineteenth century, the work that the slave narrative did was to witness and indict the injustice of the “peculiar institution”; its purpose was to destroy the institution that gave rise to it. It is thus that rare thing: an ad hoc genre. If successful, it puts itself out of business, so to speak. And in fact, it went into steep decline after the Civil War as the number of potential slave narrators—who of necessity had to be free—skyrocketed. I’d like to move from these early, instrumental life-writing genres to the contemporary memoir, using as a pivotal figure Henry David Thoreau. Thoreau was not exactly a memoirist, but he was first and foremost a lifelong life writer. He was a faithful keeper of a journal, and his posthumously published journals run to sixteen printed volumes. He scoured those journals for material for his essays, another form of life writing. And also for his longer narratives, which took two complementary forms: the journey (The Maine Woods, Cape Cod, and A Week on the Concord and Merrimack Rivers) and the sojourn, Walden. To call Walden a sojourn—an account of a temporary residence—is accurate but inadequate. When I teach it, I am at pains to read it as revising and updating colonial life-writing genres with which Thoreau was familiar. First, the narrative of exploration: Thoreau literally surveyed his surroundings but, significantly, with no commercial designs on the land. Second, the narrative of settlement: he clears land to erect his dwelling and plant crops—ironically, only a short walk from a bustling town center. However, the indigenous genre that he is most pointedly revising is the slave narrative. The most radical gesture of this multidimensional narrative is his presenting it as a white slave narrative: I sometimes wonder that we can be so frivolous, I may almost say, as to attend to the gross but somewhat foreign form of servitude called Negro Slavery, there are so many keen and subtle masters that enslave both north and south. It is hard to have a southern overseer; it is worse to have a northern one; but worst of all when you are the slave-driver of yourself. This audacious claim, potentially offensive in its seeming dismissal of Negro slavery, comes just before his oft-quoted line: “The mass of men lead lives of quiet desperation.” It is well to remember that Thoreau was in fact an ardent abolitionist. But he saw that the abolition of “Negro slavery” would leave in place a far more common form of slavery: that of everyman to his material possessions. And his experiment at Walden was meant to test ways of escaping that common institution, which of course persists to this day. The work of Walden was to model a way of life that Thoreau believed was truer to American ideals than that surrounding him in antebellum America.

Introduction  17 What is most innovative about Walden as life writing is the element of self-experimentation. Walden is the first book I can think of that involved the deliberate, temporary modification of the author’s life with the intention of writing up the experiment afterward. This involves a quantum leap in life writing: a new kind of life is imagined, tried out, then recounted and justified. There is creativity in the very conception of a life truly worth living. And with Thoreau, we have a life writer who married the highest literary art to ambitious goals. With Thoreau, I would say, American life writing reaches parity with literary genres like the novel. We may now fast-forward 150 years from the publication of Walden in 1854. Around the turn of the millennium, there was a resurgence of life writing involving short-term living experiments. Some of it is devoted to carrying out rather odd and extreme experiments—reading the entire Encyclopedia Britannica, or cooking your way through Julia Child’s classic French cookbook, in a year, for example. Because these projects are sometimes arch and trivial, this niche genre has been dubbed “shtick lit.” I prefer to call it stunt memoir. But I don’t mean to dismiss these narratives, which can be transgressive and transformative. In their attempts to live green lives, some of these memoirists are direct descendants of Thoreau. A notable example is Colin Beavan’s No Impact Man: Adventures of a Guilty Liberal Who Attempts to Save the Planet, and the Discoveries He Makes About Himself and Our Way of Life in the Process (2009). Similarly, Morgan Spurlock’s documentary film, Supersize Me, recounts his self-imposed regimen of eating McDonald’s food for breakfast, lunch, and dinner for a month, supersizing each meal when invited to. Examples like this hearken back to Thoreau in their eschewal of materialism and mass consumerism. Indeed, I have come to think of Walden retrospectively as Minimize Me. What we consider literary memoir today is rarely this instrumental. But a key criterion distinguishing discrete subgenres of memoir is precisely what they do. And there is more instrumentalism in even literary memoir than you might think—especially if we consider the personal as well as the social work; the private as well as the public functions. Critics today like to distinguish between the somebody memoir and the nobody memoir, where the distinction is between memoirs by people who are already famous, like George W. Bush and Donald Rumsfeld—to name two contemporary memoirists—or movie stars or athletes, and memoirs by hitherto anonymous individuals, like Frank McCourt, author of Angela’s Ashes (1996). Let’s take the somebody memoir first. It has become de rigueur for contemporary candidates for high office to write memoirs, to co-write them, or to have them ghost-written to advance their campaigns and their political careers. These are clearly instrumental memoirs. If they are successful, the candidates’ careers in office are often—pardon the pun—bookended by memoirs: today, government officials—from the President on down at least to the Cabinet

18 Introduction level—are pretty much guaranteed fat memoir contracts once they leave office, pretty much regardless of their performance in office. Such memoirs universally take the form of apologia, the Latin term for what we call apology in English. One reason to use the Latin term is that, contrary to our everyday use of the English word, in lit-crit terminology, an apology is not an admission of wrongdoing (that’s another genre, the confession). Rather, apology trades in self-defense and self-justification. Recent examples are former President George W. Bush’s Decision Points (2010) and Donald Rumsfeld’s Known and Unknown (2011). Jon Stewart wittily opened an interview with Rumsfeld by preemptively declaring, “Apology accepted”—the point being that of course Rumsfeld had hardly apologized in his memoir. On the contrary. He moved directly from the Department of Defense to that of self-defense. Like W., he vigorously sought to justify his policies and decisions. Mistakes may have been made, but not by them. In Decision Points, however, President Bush went so far as to acknowledge that he had authorized waterboarding—which is considered torture under international law. This prompted a Facebook movement encouraging people to go to bookstores and move the book from the Biography/ Memoir section to the True Crime section—political protest in the form of genre reassignment. This segment of the public seeks to obstruct, or subvert, the work that Decision Points is trying to carry out. It may be an unusual circumstance, but it reminds us that genres are implicit agreements between writers and readers; they are interactive, and readers are not compelled to accept the terms of the generic pact. With nobody memoirs, the agenda of the memoir may be less obvious, and utilitarianism may vary inversely with aesthetic ambition, but it is hardly absent. Based on a sample of more than 200 recent nobody memoirs, the novelist and critic Lorraine Adams claimed that almost all fall into one of three types: The largest by far is the childhood memoir—incestuous, abusive, alcoholic, impoverished, minority, “normal,” and the occasional privileged. The second largest type is the memoir of physical catastrophe—violence, quadriplegia, amputation, disease, death. The third is mental catastrophe—madness, addiction, alcoholism, anorexia, brain damage. (Adams 2002) My own contribution here has been to point out that the nobody memoir is often the memoir of some body (two words). That is, it is often concerned with what it’s like to inhabit, or to be, a particular body. Note that Adams’s latter two categories—physical catastrophe and mental catastrophe—are more or less congruent with two kinds of disability. Nobody memoirs are often odd body memoirs—or, if you prefer, odd-body-ographies.

Introduction  19 Although this has generally not been acknowledged by mainstream critics, the memoir boom has coincided with, if not been impelled by, the rise of the disability memoir. Lucy Grealy literally embodied the nobody/some body memoirist. Starting out as a poet, she was little known before she published Autobiography of a Face in 1994. From its title on, Autobiography of a Face is concerned with living with a body disfigured initially by cancer of the jaw, which Grealy suffered as a child, and later by dozens of reconstructive surgeries, which required transplanting bone and flesh from other parts of her body to her face. Perhaps more than any other, Grealy’s book established the commercial and literary potential of the disability memoir. One aspect of the emergence of the some body memoir is that many diseases or disabilities, some quite obscure, have generated small numbers of narratives. Some of these conditions are of relatively recent vintage, as modern biomedicine continues to generate diagnostic labels and to pathologize human variation; others, though long known, have never before been represented in nonscientific nonfiction, i.e., in life writing. In this latter category of conditions are amputation, amyotrophic lateral sclerosis or Lou Gehrig's disease, anorexia and other eating disorders, asthma, bipolar illness, borderline personality disorder, cerebral palsy, chronic fatigue syndrome, cystic fibrosis, deformity, diabetes, epilepsy, insomnia, locked-in syndrome, multiple sclerosis, Munchausen syndrome by proxy, obesity, obsessive-compulsive disorder, Parkinson’s, prosopagnosia (or face-blindness), schizophrenia, stuttering, stroke, and Tourette syndrome. A complementary aspect of this trend is that a few conditions have generated large numbers of narratives. In my 1997 book Recovering Bodies: Illness, Disability, and Life Writing, I surveyed four such conditions—breast cancer, HIV/AIDS, deafness, and paralysis. I could easily have included three more: blindness, depression, and autism—four, if you consider addiction a medical illness or a disability. One way to understand the sudden surge in accounts of these conditions is against the background of civil rights movements of the last quarter of the twentieth century. Just as what we sometimes call the civil rights movement was accompanied by the proliferation and prominence of African American autobiography, the women’s liberation movement had much to do with the emergence of breast cancer narratives. When my mother had breast cancer in the early 1960s, not a single published narrative was available to instruct or comfort her; the same would have been true a decade later. But narratives of breast cancer proliferated in the 1980s; this was a function not of medical, but of political, progress: women began to assert control over their own bodies and over their stories. Similarly, HIV/AIDS narratives have both reflected and advanced the gay rights movement; a disease that simultaneously killed and outed so many gay men in the U.S. inevitably manifested itself in life writing as well as in more overtly political forms.

20 Introduction It should be obvious that the emergence of the disability memoir is related to the disability rights movement, but it’s rarely acknowledged, for the movement has gone unnoticed by much of the public. Nevertheless, it has been enormously significant. Its landmark accomplishment in the United States was the passage, in 1990, of the Americans with Disabilities Act (ADA), a civil rights law that banned discrimination against people with disabilities. (After nearly two decades of erosion by legal challenges, its original intent was reaffirmed by Congress in the ADA Amendments Act in 2008.) As disabled people have become more visible in the public sphere, increasing publication of their lives should come as no surprise. And the work that these memoirs do collectively is to demystify and to destigmatize the conditions they represent. I want to conclude by suggesting that we compare the set of the subjects of memoirs to the set of subjects contained in a reference work like the Dictionary of American Biography. Subjects included in such dictionaries are by definition somebodies—people who played meaningful roles on the public stage. As such dictionaries grow older and are revised and updated, the diversity of their subjects increases—more women, for example—but the criterion of inclusion remains the same. In comparison, the set of subjects of memoirs is far more diverse, because they do not have to be somebodies to begin with. And this suggests to me that, collectively, memoir can play a democratizing role in our culture, bringing more and more lives—and kinds of lives—to light. And so I would say it deserves the accolade William Dean Howells gave it late in the nineteenth century, when he dubbed it “the most democratic province in the republic of letters.”

Works Cited Adams, Lorraine. “Almost Famous: The Rise of the ‘Nobody’ Memoir.” Washington Monthly, April 2002. Print. Beavan, Colin. No Impact Man: Adventures of a Guilty Liberal Who Attempts to Save the Planet, and the Discoveries He Makes About Himself and Our Way of Life in the Process. New York: Farrar, Straus and Giroux, 2009. Print. Bechdel, Alison. Fun Home: A Family Tragicomic. New York: Mariner, 2007. Print. Bradford, William. Of Plimoth Plantation. Boston: Wright and Potter, 1901. Print. Bush, George W. Decision Points. New York: Crown, 2010. Print. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Print. Couser, G. Thomas. Memoir: An Introduction. New York: Oxford University Press, 2012. Print. Foster, Thomas C. How to Read Novels Like a Professor: A Jaunty Exploration of the World's Favorite Literary Form. New York: Harper, 2008. Print. Frey, James. A Million Little Pieces. New York: Doubleday, 2003. Print. Grealy, Lucy. Autobiography of a Face. Boston: Houghton Mifflin, 1994. Print.

Introduction  21 Grogan, John. Marley and Me: Life and Love with the World’s Worst Dog. New York: Harper Collins, 2005. Print. Hillenbrand, Lauren. Seabiscuit: An American Legend. New York: Random House, 2002. Print. McCourt, Frank. Angela’s Ashes. New York: Scribner, 1996. Print. Mullan, John. How Novels Work. New York: Oxford University Press, 2006. Print. Rumsfeld, Donald. Known and Unknown: A Memoir. New York: Sentinel, 2011. Print. Satrapi, Marjane. Persepolis: The Story of a Childhood. New York: Pantheon, 2003. Print. Spiegelman, Art. Maus I: A Survivor’s Tale: My Father Bleeds History. New York: Pantheon, 1991. Print. Spiegelman, Art. Maus II: A Survivor’s Tale: And Here My Troubles Began. New York: Literary Guild, 1991. Print. Thoreau, Henry David. Cape Cod. 1864. Reprint. Ed. Joseph J. Moldenhauer. Princeton: Princeton University Press, 1988. Print. Thoreau, Henry David. The Maine Woods. 1864. Reprint. Ed. Jeffrey S. Cramer. New Haven: Yale University Press, 2009. Print. Thoreau, Henry David. Walden. Boston: Ticknor and Fields, 1854. Print. Thoreau, Henry David. A Week on the Concord and Merrimack Rivers. 1849. Boston: Houghton Mifflin, 1961. Print. Wood, James. How Fiction Works. New York: Farrar, Straus and Giroux, 2008. Print. Yagoda, Ben. Memoir: A History. New York: Riverhead, 2009. Print.

3 Quality-of-Life Writing Illness, Disability, and Contemporary American Memoir*

Let me begin at the beginning, with my title. “Quality-of-life writing” is a term I coined around 2007 for an essay I wrote for an MLA volume, Teaching Life Writing Texts (Couser). Obviously, I simply fused two existing terms, life writing and quality of life, to form a new one. In what follows, I’ll explain why I thought this might be a useful addition to the critical lexicon. I don’t need to define “life writing” for you. But I want to say a little about the term from the perspective of someone who’s been in the field for a long time; some of this may be news to those starting out. My doctorate is in American studies, and my 1977 dissertation was titled “American Autobiography: The Prophetic Mode.” Autobiography was the term of art then; in fact, autobiography was just beginning to be studied and analyzed as a significant literary genre. Biography had long been studied, mostly by students of history and by biographers themselves. The still premier journal in the field, founded in 1978 at the University of Hawai‘i, is called, somewhat misleadingly, Biography. Of course, etymologically, biography means life writing, but most of us think of the term as referring to a single genre, the flagship of the fleet, so to speak. In the 1970s biography was the prestigious lifewriting genre, and the journal focused on it. This was so much the case that after a pioneering conference at Louisiana State University in 1984, hosted by James Olney, a group of young scholars decided that autobiography needed its own journal. The founders hedged their bets a bit, deciding to call it a/b: Auto/Biography Studies. It was begun on a shoestring but is now mature and wellrespected. As the field developed, even this hybrid title seemed too restrictive: scholars began to broaden their inquiries from long-form published life narratives to shorter, less formal genres. The name of the Australian journal Life Writing, founded in 2004, reflects this. Indeed, in the age of the selfie, the very term “writing” has become obsolete. New journals,

* I gave this lecture to a group of faculty and graduate students in Medical Humanities at Kings College, London, in May 2019.

Quality-of-Life Writing  23 some online only, have been created to serve the increasing interest in non-, pre-, or post-print modes of life narrative. So much for literary terminology (for now). The term “quality of life” comes from a different context, the field of medicine, especially public health. In that field, the term is qualified thus: health-related quality of life, abbreviated as HRQOL. The website of the US Center for Disease Control (or CDC) has this to say about HRQOL: The concept of health-related quality of life (HRQOL) and its determinants have evolved since the 1980s to encompass those aspects of overall quality of life that can be clearly shown to affect health— either physical or mental. On the individual level, HRQOL includes physical and mental health perceptions (e.g., energy level, mood) and their correlates—including health risks and conditions, functional status, social support, and socioeconomic status. The passage goes on to discuss HRQOL of groups and communities and to affirm the value of “surveilling” whole populations with an eye to preventing disease and optimizing public health. (https://www.cdc.gov/ hrqol/concept.htm#3 accessed 8 October 2019) In medicine, the notion of quality of life is supposed to shift the focus from merely objective data, what can be observed through various medical technologies, to subjective values that elude such devices. In practice, however, common instruments for assessing HRQOL often constitute questionnaires that look like this: By placing a tick in one box in each group below, please indicate which statements best describe your own health state today. Mobility I have no problems in walking about □ I have some problems in walking about □ I am confined to bed □ Self-Care I have no problems with self-care □ I have some problems washing or dressing myself □ I am unable to wash or dress myself □ Usual Activities (e.g. work, study, housework, family or leisure activities) I have no problems with performing my usual activities □ I have some problems with performing my usual activities □ I am unable to perform my usual activities □ Pain/Discomfort I have no pain or discomfort □ I have moderate pain or discomfort □ I have extreme pain or discomfort □

24  Quality-of-Life Writing Anxiety/ Depression I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed

□ □ □

This form then asks participants to mark their QOL on a scale from 100 (best imaginable health state) to 0 (worst imaginable health state). You may already see the problem with such questionnaires. They may be of use in surveying the QOL of large populations. But for individuals, I think they are woefully inadequate, even insidious. Why so? For starters, while they purport to assess something qualitative, the instruments are implicitly quantitative. The boxes are not assigned scores, but they are obviously ranked. One could assign values to each (1, 2, 3, or 0, 1, 2); totaling the answers would yield what might be regarded as a single numerical index of one’s HRQOL. Furthermore, such questionnaires imply that these are the only factors to be considered in locating oneself on the continuum. Finally, although the “perceptions” elicited are those of the individuals surveyed, subjects are given only a limited number of aspects of their lives to rate. I’ll return to the importance of this later, but if we compare this survey to the text from the CDC above, we can see that the focus here is only on “functional status.” “Social support” and “socioeconomic status” are omitted. In any case, well into my decades-long study of narratives of illness and disability, I coined the term quality-of-life writing to describe narratives that challenge this very narrow view of quality. I’ll explore this more fully in a bit. But first, let me explain the “disability paradox.” In survey after survey—presumably not using instruments like the one I just analyzed—disabled people rate their quality of life almost as highly as nondisabled people rate theirs. That, in short, is the disability paradox: that disabled people report their QOL nearly as highly as nondisabled people report theirs. Such reports simply defy “common sense.” Don’t disabled people know their QOL is lower than that of otherwise similar individuals? Are they in denial, self-deluded, ignorant? Lying to save face? Now, although there’s a very small gap between the subjective reports of QOL by nondisabled and disabled people, there is a significant gap between the estimates by nondisabled people of disabled people’s QOL and their own reports of it; in other words, there’s a significant discrepancy between the inside and the outside views of the QOL of disabled people. (It would be misleading to describe this as a discrepancy between the subjective and the objective, for reasons I hope to establish.) Furthermore, nondisabled health care professionals render even lower estimates of the quality of life of disabled people than the general nondisabled population. And one of the major obstacles to the delivery of health care to disabled people is this well-established disparity between

Quality-of-Life Writing  25 the reports of their quality of life by disabled people and the estimates of their quality of life by medical professionals. I will refer hereafter to this discrepancy between high first-person reports and low third-person estimates of the quality of life of disabled people simply as “the gap”. Since medical professionals are after all—or above all—dedicated to the improvement of physical and mental wellbeing, they might be expected to devalue states of impairment and illness. So the gap may not be surprising. But it is disturbing; more than that, it’s dangerous. For example, I have heard reports of DNR (“do not resuscitate”) orders being inscribed on the charts of people with disabilities without their knowledge, much less their permission. My late friend and colleague William Peace, an anthropologist and longtime paraplegic, was informed soon after his admission to a hospital for complications of a pressure wound that his physician could “make him comfortable” if he wished to decline aggressive treatment. Bill’s response was to make sure that his physician knew that he had a PhD and to ensure that he had frequent visitors—which is to say, he sought to establish that he had intellectual and social capital his physician assumed he lacked. Bill was fortunate to be able to attest in this way to his QOL. One worries, though, about people who lack such collateral assets to offset their disability in the eyes of their “care-givers.” So the gap can have life-or-death consequences in the delivery of health care to people with disabilities. At the beginning of life, the gap may create a bias toward the selective abortion of fetuses with detected abnormalities. Indeed, a number of bioethicists, the most notorious of whom is Peter Singer, have used presumptions of low quality of life to justify biomedical programs to reduce the population of disabled individuals (Amundson 3). At the end of life, this gap may create a bias toward assisted suicide for the disabled. In order to explore the troubling implications of this gap, let me introduce the fundamental, if somewhat counterintuitive, distinction made in disability studies between impairment and disability. Traditionally, disability has been viewed under the “medical paradigm,” which pathologizes anomalies in the body (even when, as with short stature, they are not health-related or functional problems). Medicine seeks to identify, diagnose, explain these anomalies to prevent or correct them. Disability studies deploys a complementary paradigm; under the “social paradigm,” somatic anomalies are not seen as inherently problematic, inferior, or pathological. Rather, they are understood as culturally constructed; moreover, the focus is not on the individual body but on the fit between the body and the environment. The social paradigm thus supports activism aimed at reforming society to minimize disadvantages posed by the environment to people with unusual bodies. Under this paradigm, “impairment” is found in the body, “disability” in the often-hostile environment.

26  Quality-of-Life Writing The classic example of this distinction is that paraplegia, found in the body, is an “impairment.” Unable, as yet, to cure spinal-cord injury, the medical paradigm offers prosthetic devices like wheelchairs, which enable mobility. A paraplegia’s “disability,” however, is found in an environment lacking elevators or ramps, which limits the mobility of the wheelchair user. The social paradigm addresses that deficiency by advocating for an accessible environment. As I said earlier, the two paradigms are complementary, rather than opposed. I hope you can see already how this applies to the HRQOL instrument discussed earlier. While it invites the perspective of the respondents, it addresses only their bodies. And it limits the criteria for quality of life to a few basic considerations. It thus reflects the medical, rather than the social, paradigm. My thinking about all of this has been stimulated and shaped by an article called “Quality of Life, Disability, and Hedonic Psychology,” by a disabled philosopher, Ron Amundson. Hedonics is the study of the subjective experience of pleasure or happiness. It may sound touchy-feely, but it is an experimental field yielding empirical results. The results of hedonics studies are sometimes quite counterintuitive, which makes them all the more interesting. It finds, for example, that most people are not very good predictors of what will make them—or others—happy. For example, most people think that a major positive life change, like hitting the lottery, will make them very happy. It may, but not as much as they expect, and not for long. Hedonics explains this in terms of various psychological mechanisms. Hedonics finds that the psyche is remarkably resilient: it generally maintains an emotional homeostasis through life’s ups and downs, adjusting to radical changes in personal circumstances. The bad news is that winning the lottery doesn’t make you very happy for very long; the good news is that suddenly acquiring a significant impairment, like paralysis, need not make you unhappy for long, either. What matters here is that hedonics helps to validate and explain disabled people’s surprisingly high reports of their quality of life. That is, it resolves the “disability paradox.” In my view, this corroboration constitutes a real advance in the study of disability—a truly big deal. Ideally, dissemination of these findings would reduce the gap between nondisabled people’s estimates of the QOL of disabled individuals and their own reports of that QOL. We now return to life writing—because these findings provide a new argument for the value of nonclinical narratives of illness and disability. This argument hinges on a psychological phenomenon called the focusing illusion (Amundson 8–9). This comes into play when experimental subjects have their attention directed to a single factor when rating quality of life. For example, one experiment asked students to rate their quality of life and their recent dating frequency. Half were asked about dating

Quality-of-Life Writing  27 first; half were asked about their overall quality of life first. For the group focused on dating, quality of life was strongly correlated with dating frequency. For the other group, the two results were quite independent. The implication, of course, is that the first group overestimated the relevance of dating to their overall quality of life because their minds had been focused on that single factor. Hence, the term focusing illusion. Similarly, when nondisabled people are asked to estimate the quality of life of a disabled person, the very question supplies a focus that skews the result: they are asked to rate the quality of life of someone about whom they know only that they are disabled. In contrast, when a disabled person is asked to report their own quality of life, the response is multifactorial, holistic, and thus more positive. Significantly, the same is true when the estimator is a friend, a partner, or a close relative of the disabled person. The focusing illusion also applies to our HRQOL survey form. When individuals fill out this form, they are led to evaluate their QOL only in terms already presented to them, perceptions of their somatic state. Nothing is asked about their social, cultural, and political environment, which can profoundly affect their overall QOL. The researchers cited by Amundson concluded, “the less you know about paraplegics, the worse off you think they are” (Schkade and Kahneman, qtd. in Amundson 386). Now, the next best thing to knowing someone with a disability may be knowing their story. Hence the value of what I call quality-of-life writing, narratives by people with significant illnesses and disabilities that render their experience subjectively and holistically and which, increasingly (in the US, at least), deploy the social paradigm. Until quite recently in Western culture, high or low, the subjectivity of disabled people has rarely been foregrounded, rarely understood in depth and in full context. But if we turn from poetry, fiction, drama, and film to nonfiction, especially to life writing, we find a counterdiscursive movement over at least the last half-century, culminating in the current “memoir boom.” Like other marginalized groups, disabled people have much to gain from taking the means of literary production into their own hands. But this is a fraught and precarious move. In everyday life, disabled people are considered responsible for self-narration as examples of misfortune, and are often asked bluntly by complete strangers: “What happened to you?” To this question, the desired answer is one that offers a medical diagnosis or a story somehow reassuring to the inquisitor. Like other minorities historically represented largely by members of dominant groups, disabled people come to literary production from within the same culture that marginalizes them; they are vulnerable to infection with the very prejudices that oppress them. Thus, disabled people come to life writing from a position of pre-inscription: they are already known as defective, deficient, interpellated as fundamentally other. In life

28  Quality-of-Life Writing writing, their charge is to undo, and/or overwrite, their prior representation: to offer compelling counter-representation. The challenge is to do this without deploying rhetorics already in circulation that simply reinforce stigma or condescension. Furthermore, unlike other marginalized statuses, disability may interfere with, or even preclude, self-narration; for disabled people, self-representation may involve obstacles not faced by gender, racial, or ethnic minorities. In North America, successive rights movements—the civil rights movement, the women’s liberation movement, the gay rights movement—were accompanied by discrete memoir booms. These memoir booms did not merely parallel the rights movements; they advanced them. There was a reciprocal relationship between the political and the literary. As rights movements expanded the audience for minority memoirs, counterdiscursive life writing reinforced the political critiques being made by rights advocates. In the 1990s, there was an upsurge in narratives of HIV/AIDS and of breast cancer—each niche genre being linked to a respective rights movement. Similarly, a spike in the number of disability memoirs accompanied the disability rights movement, whose major achievement was the passage of the Americans with Disabilities Act in 1990. The critic Lorraine Adams observed a fundamental distinction between “somebody memoirs” (written by celebrities) and “nobody memoirs” (written by individuals who were not hitherto public figures). Somebody memoirs have the advantage of a preexisting audience: the narrative is a consequence of and a capitalization on their fame. In contrast, nobody memoirs have to earn their audiences on their own merits: if their previously anonymous authors achieve fame, it is a function of their stories attracting readers. Piggy-backing on Adams’s distinction, I coined the term “some body memoirs” to denote nonfiction narratives of living in, with, or as an anomalous body. (A more technical term for these would be autosomatographies.) These can be sorted roughly into two categories. On the one hand, a few conditions—such as breast cancer, HIV/AIDS, blindness, deafness, and recently depression—have generated many narratives. The cultural “selection” of these conditions is worth investigation, because it is not the case that the most deadly and dangerous conditions produce the most narratives. If it were, women would write more narratives of lung cancer than of breast cancer. Similarly, there are relatively few narratives of common conditions like heart disease or diabetes. Obviously, other factors are at work: breast cancer in women is memoir-worthy because it affects an organ closely associated with beauty, sexual desirability, and female identity. And it was not merely the virulence of HIV/AIDS but its association with early death in gay men that accounted for so many narratives being written. On the other hand, numerous conditions have generated a few narratives each. Over the years I kept an ever-lengthening list of conditions, some quite rare, that produced small numbers of memoirs. The literary

Quality-of-Life Writing  29 marketplace seems to have room for a vast array of such conditions. Recently, I co-edited a two-volume reference work entitled Disability Experiences: Memoirs, Autobiographies, and Other Personal Narratives (Couser and Mintz). It contains individual treatments of 200 such narratives of nearly 100 distinct conditions. And the book does not claim to be exhaustive. So, today, at least in North America, having an unusual impairment or illness is considered an appropriate basis for a full-length memoir. In the internet age, the ease, decreased cost, and increasing respectability of self-publishing all encourage such testimony. And of course, beyond the realm of print, there is cyberspace, which hosts blogs, online support groups, and other forms of self-representation. As a result, disability life writing proliferated dramatically around the turn of the millennium. In addition to mirroring the disability rights movement, however, the incidence of disability narrative also reflects the public’s fears: a distinguishing feature of disability is that it constitutes the only minority that members of the majority can join at any time. Disability is often treated as though it were communicable in the medical sense: kept at a psychological distance for fear that it might contaminate the “healthy” and unimpaired. Insofar as it may disarm irrational fears of disability, the contemporary boom in disability life writing should be welcomed. But the relation between disability memoir and the impulse to “quarantine” disability is somewhat problematic. The production of their own first-person nonfictional narratives is certainly a key development in the history of disabled people, but it is far from an uncomplicated phenomenon. As I have suggested earlier, pre-inscription challenges disabled memoirists to undermine common preconceptions about disability; unfortunately, some disability memoirs seem instead to offer (false) reassurance to the nondisabled. In Signifying Bodies, my book on disability and contemporary life writing, I identified several common rhetorical patterns in disability memoir that do just that, or mostly that (Chapter 3). One is what I call the rhetoric of triumph, as manifested in the popularity, and thus the prevalence, of narratives of overcoming. Whereas disabled protagonists in Western drama and fiction are often subjected to scorn, destruction (including self-destruction), and/or sentimental condescension, disabled memoirs tend to have comic plots that recount their protagonists’ triumph over adversity. Narratives that offer up unlikely supercrips (a disparaging term for disabled people who overcompensate for their supposed deficiencies) are often referred to disparagingly by disabled people as “inspiration porn” because in life, as distinct from life writing, such triumph is the exception rather than the rule. But narratives of overcoming disability are particularly valued in the literary marketplace. Narratives of overcoming are insidious not only because they grossly misrepresent the real world, in which poverty and unemployment are endemic among disabled people, but also because they suggest that the

30  Quality-of-Life Writing environment is not so hostile that an impaired person cannot succeed through sheer determination. After all, what is overcome in such narratives is usually not what disability scholars call disability, but rather impairment. The protagonist/narrator manages to achieve something thought unlikely or impossible for a person with a particular condition: the blind person climbs Everest; the one-armed boy grows up to be a major league baseball pitcher. The plot of overcoming seems calculated to reassure, not others with the same impairment, who know all too well what they are up against, but rather the nondisabled, whose fear of disability may be somehow assuaged, at least temporarily, by best-case scenarios. In short, the overcoming memoir is not counterdiscursive: its message is that things are all right as they are. The disabled can succeed like the nondisabled if only they have sufficient grit. One of the significant developments of the last several decades has been the development of more subversive narrative methods in disability memoir. One, borrowed from gay and lesbian narrative, is the story of coming out, of owning and affirming one’s identity as a disabled person. This scenario appeals to those whose status may be liminal: those with impairments invisible to casual observers, or mild enough to be hidden or masked. Here, the link between disability narrative and the disability rights movement is evident, in a couple of ways. First, as the movement asserts that disabled people merit equal rights, it implicitly encourages openness about one’s identity. Second, the public-ation (literally, the making public) of one’s story alters the dynamic between the disabled and the nondisabled. Coming out, making oneself “visible” as disabled, troubles the easy division of people into two distinct categories. Making nondisabled readers realize that they already live comfortably among people with quite significant, though imperceptible, impairments can thwart the othering of disabled people. Contrary to narrative patterns that remove stigma from the individual while leaving it in place for the condition, the coming-out story in effect exposes the arbitrariness of the stigma by affirming the condition that it is attached to. The coming-out story changes the landscape in which most of us live. Further, emerging in print from the disability closet can encourage others with disabilities to come out. As it happens, among recent coming-out memoirs have been narratives by significant figures in disability studies: for example, Georgina Kleege’s Sight Unseen (1999) and Stephen Kuusisto’s Planet of the Blind (1997). In these narratives, life writing and advocacy merge. Another counterdiscursive pattern is the narrative of emancipation. Here, coming out may be literal rather than figurative, as in leaving a custodial institution. One such is I Raise My Eyes to Say Yes (1989), by Ruth Sienkiewicz-Mercer, a woman so severely disabled by cerebral palsy that she has never been able to walk, feed herself, or speak. Institutionalized by a family unable to afford a private hospital, she was

Quality-of-Life Writing  31 assumed by medical staff to be cognitively impaired and, in effect, warehoused. She eventually succeeded in communicating nonverbally to the extent that the staff recognized her intelligence and, after a long struggle, she was able to move out of the institution and to live on her own with assistance—autonomously, though not independently—and to marry. As my term emancipation suggests, this subgenre has much in common with slave narratives. There, inequality is ascribed on the basis of race; here, on the basis of impairment. What makes stories like SienkiewiczMercer’s particularly valuable is that they assert equality and demand freedom despite the undeniable dysfunction of the bodies in question. Her freedom and autonomy depend on the recognition that her impairment does not justify unequal treatment, let alone involuntary confinement. The production of this narrative illustrates an issue alluded to earlier: cognitive, neurological, and physical impairments may make it difficult or impossible for disabled people to speak for themselves, much less to represent themselves in print. In cases like Sienkiewicz-Mercer’s, however, assistive technology and human collaboration can empower the aspiring memoirist. The production of her narrative involved an advocate, Steven B. Kaplan, who prompted her with questions; she responded with the help of word boards, and he would then sketch out a narrative and submit it to her for her approval. Methods like these, while complicated, labor-intensive, and time-consuming, do not compromise the validity of the narrative: as long as the “author” can “authorize” their text by reading and approving it, the narrative should be worthy of trust. It is unfair to subject memoirists with impaired communication to more scrutiny than is applied to nondisabled memoirists; after all, celebrity memoirists often deploy ghostwriters (typically with far less transparency). Significantly, during the current memoir boom, a period characterized by several highly publicized fraudulent memoirs involving false claims of victimhood—usually that of a Holocaust survivor—I am not aware of the discrediting of a single published disability memoir. That is not to say, however, that disability memoir entails no ethical problems. To the contrary, disabled people are among the subjects most vulnerable to exploitation when the text is not in their control and they are not able to assess and respond to their representation. In everyday life, the term “memoir” is often used interchangeably with “autobiography,” but as the prefix suggests, autobiography must be self-authored, whereas memoir can be written by anyone acquainted with the subject. And therein lies an ethical issue. Before the current memoir boom, one of the most common forms of disability memoir was the parental memoir of the disabled child, and this genre continues to be popular. Obviously, no child is in control of a parental memoir, but few nondisabled children are the subjects of such memoirs. Disabled children are doubly disadvantaged, by their junior status and by their disability; they are especially vulnerable subjects. Parents’ motives are usually

32  Quality-of-Life Writing noble: to “raise awareness” of a disability, to influence public policy, to celebrate a life lived in adverse circumstances. But there is always the danger that the disabled child will be presented as a parental nightmare. Such was the case, I have argued, with Michael Dorris’s The Broken Cord (1989), which recounts the celebrated novelist’s difficulty raising an adopted Lakota son with Fetal Alcohol Syndrome: “He avoided work whenever possible, refused to pay attention to his appearance, was slow to motivate, and only occasionally told the truth” (200). In his fervor to limit the incidence of this syndrome, Dorris—apparently a supportive parent in everyday life—inadvertently but inevitably devalued his own son’s life by presenting him as the poster child for a preventable disability. A more positive scenario involving a subject with a cognitive impairment is Rachel Simon’s Riding the Bus with My Sister (2002). After having grown somewhat distant from her cognitively impaired sister, Rachel reacquainted herself with Beth, immersing herself in her daily routine of riding public transportation around her hometown. In the process, Rachel came to see what Beth finds gratifying in what might appear to most nondisabled people a pointless and vacant activity, literally traveling in circles. Beth relished the companionship of the drivers, most of whom welcomed her presence aboard. Rachel credits her sister with having a life—indeed, quite a lively social life—that she created in her own idiosyncratic way. Rachel enters that life not only as a sister, but also like an ethnographer, watching her sister negotiate the demands of independent living, learning what support services she uses, and reconciling herself to Beth’s aversion to boring jobs. The result is a kind of rare disability (auto)ethnography. Crucially, Beth had sufficient literacy to be able to read and endorse the story. William Dean Howells once referred to autobiography as “the most democratic province in the republic of letters” because it is by far the most accessible of literary genres (Howells 795). That assessment is far truer now than when he uttered it over a century ago. The memoir boom has seen a marked increase in the number of published (and self-published) narratives and heightened respectability for memoir as a literary genre, which is now taught under the rubric “the fourth genre” in creative writing programs. More important, it has also entailed a significant change in the demographics of memoir writers. Many are female, and many write their memoirs at relatively young ages—and sometimes more than one. More to the point here, however, it is common today for people with disabilities—even ones that once seemed to preclude the writing of memoir—to produce narratives published by trade presses. The most remarkable example of this has been the proliferation of memoirs by autistics—rather than about them by parents or siblings.

Quality-of-Life Writing  33 Not so long ago, it was “common knowledge” that autobiography and autism were incompatible. If you were autistic, you were incapable of writing your own story; if you wrote your own story, you were not truly autistic. But today, in the wake of Temple Grandin’s Emergence: Labelled Autistic (1986), there exists a substantial and rapidly growing corpus of autistic memoirs: indeed, the genre has been given its own name: “autiebiography.” To date, self-written narratives of (early) Alzheimer’s are few, but they are no longer unheard of; a notable example is Thomas DeBaggio’s Losing My Mind (2003). The difficulties attendant on impairment are very different with dementia, but here, too, the medium is the message. Such memoirs are “performative utterances.” Their very creation is the point: there is a person in here. Respect must be paid. When I entered disability studies from the field of life-writing studies in the early 1990s, I encountered palpable suspicion, if not hostility, to disability life writing. Several influential scholars had dismissed such narrativization as inherently individualizing and thus in conflict with the social model’s agenda of highlighting the oppression of disabled people as a cohort. The fear seemed to be that disability memoir would emphasize impairment, rather than disability, or that it would evoke sympathy for the individual, rather than support for the cause. The situation has changed drastically. And that has been as much a credit to disability memoirists as to scholars. Over the last three decades or so, the body of disability memoir has grown not just in volume but in sophistication; early dismissals of disability memoir, never fair, seem in retrospect even more misguided. It is also true that as the field has come to recognize the limitations of the “social model,” it has made more room for narratives that focus on impairment, on sheer bodily suffering and pain. To censor that is to deny the reality of disability for many. Overall, then, the flowering of life writing—though not without obvious problematic aspects—has been a significant development in disability literary history. As disabled lives are lived more and more in the open, thanks to legislation creating greater access, disabled lives are being more frequently written—and especially self-authored. Moreover, new ways of representing disability bid to change the way disability is understood by the public at large. Given the devaluing of disability by the general population (and, to a greater degree, by medical professionals) and at a time of increasing access to prenatal and genetic testing and increasing enthusiasm for legalization of physician-assisted suicide—both of which threaten the existence of people with disabilities—there is a pressing need today for disability life writing to function as what I call “quality-of-life writing”: testimony affirming the value of living with disability.

34  Quality-of-Life Writing

Works Cited Adams, Lorraine. “Almost Famous: The Rise of the ‘Nobody’ Memoir,” Washington Monthly, April 2002. http://www.washingtonmonthly.com/features/2001/0204.adams.html (accessed October 31 2014). Amundson, Ron. “Quality of Life, Disability, and Hedonic Psychology.” Journal for the Theory of Social Behavior 40(4), November 2010: 374–392. Print. Couser, G. Thomas, and Susannah Mintz, eds. Disability Experiences: Memoirs, Autobiographies, and Other Personal Narratives, 2 vols. Detroit: St. James, 2019. Print. Couser, G. Thomas. “Quality-of-Life Writing: Illness, Disability, and Representation.” Teaching Life Writing Texts. Eds. Miriam Fuchs and Craig Howes. New York: MLA, 2008, 350–358. Print. Couser, G. Thomas. Signifying Bodies: Disability and Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009. Print. DeBaggio, Thomas. Losing My Mind. New York: Touchstone, 2003. Print. Dorris, Michael. The Broken Cord. New York: Harper Perennial, 1990. Print. Grandin, Temple, with Margaret M. Scariano. Emergence: Labelled Autistic. Novato: Arena, 1986. Print. Howells, William Dean. “Autobiography, A New Form of Literature.” Harper’s Monthly 119, October 1909: 795–798. Print. Kleege, Georgina. Sight Unseen. New Haven: Yale University Press, 1999. Print Kuusisto, Stephen. Planet of the Blind. New York: Dial, 1997. Print. Sienkiewicz-Mercer, Ruth, and Steven B. Kaplan. I Raise My Eyes to Say Yes. Boston: Houghton Mifflin, 1989. Print. Simon, Rachel. Riding the Bus with My Sister: A True Life Journey. Boston: Houghton Mifflin, 2002. Print.

4 Is There a Body in This Text? Embodiment in Graphic Somatography*

As a long-time advocate of personal narratives of illness and disability as venues for “recovering bodies”—i.e., taking back the experience of somatic dysfunction from medical authority and talking back to medical discourse—I welcome the advent of graphic somatography. I’ve long valued autobiography as what William Dean Howells called “the most democratic province in the republic of letters”—that is, the most accessible literary genre. So I see the extension of its realm into the graphic medium as highly desirable. For one thing, graphic memoir makes autobiography accessible to a different set of potential authors—those whose primary, or preferred, mode of expression is drawing, rather than writing; it thus expands the population of what is already an inclusive “province” of literature. (Admittedly, this is not a large group of people, because far more people can write their lives than can draw them. In any case, the graphic medium is more labor-intensive.) In addition to making memoir accessible to more authors, the graphic medium makes it accessible to more readers. Its primary reliance on images rather than words can entice and engage consumers who are not habitual readers. It may have special significance, then, in a post-literate era, especially for younger readers, with the potential to broaden the audience for memoir, whether somatographic or not. In addition, and not coincidentally, a visual medium may appeal especially to consumers who “think in pictures,” as the renowned autistic Temple Grandin says she does. So the medium may recommend itself as more accessible to a marginalized group. Moreover, in his discussion of Keiko Tobe’s With the Light: Raising an Autistic Child, Chris Foss claims that manga may be particularly well suited to the representation of autistic experience: “Tobe employs many compelling combinations of motion and sound to communicate how [her son] Hikaru experiences his environment; these scenes not only strikingly render the sensation of the sound and motion but also powerfully pull readers into Hikaru’s own point of view (providing * This article originally appeared in a/b: Auto/biography Studies (Special issue on Embodiment) 33.2 (2018): 347–373. Reprinted by permission of Taylor & Francis.

36  Is There a Body in This Text? an acute awareness of what precisely is so arresting for him about these particular combinations)” (120). And, as Christina Maria Koch notes in a discussion of David Small’s Stitches, disability is subject both to a kind of hyper-visibility (insofar as it deviates from a visual norm), on the one hand, and to political erasure, on the other, but subtle, self-aware visual representation can counter both of these liabilities (47). So graphic narrative has the potential both to augment and to enrich the narrative representation of disability. By referring to the medium’s relative accessibility, I do not mean to deny its sophistication. Its visuality may be uniquely attractive and initially seductive, but, as I discovered in teaching it, “reading” graphic memoir is a very different, and far more complex, process than consumers may assume. Julia Wertz makes this point in The Infinite Wait, her graphic narrative of living with lupus. Seeking some mindless reading (comics relief?) while she undergoes nauseating and tiring treatment, she borrows some graphic narratives from her local library: “If it’s mostly images, I won’t have to strain to focus on text. My eyes and brain can just go on autopilot.” However, “instead of lighthearted fare, the comic books blew my fucking mind.” If their apparent simplicity drew her to them initially, as a consumer, it was their complexity that attracted her to them as an expressive medium: “The comics of my childhood had been transferred into my adulthood . . . and I knew that comics were going to be my thing” (142). In this crucial moment, the illness narrative reveals itself as a Künsterroman as well; lupus—or rather, treatment for it—makes Wertz a comics artist. The medium becomes her medicine, engaging her mind and body in healing ways: “During treatment, when I wasn’t reading or making comics I was sleeping or trying to” (143). Hence the term “graphic medicine,” a term coined by Ian Williams to suggest the therapeutic power of the medium—for its readers as well as its authors. For me, the main advantage of the graphic medium, and the reason it has special potential for somatography, is that it admits the body into the narrative in new ways, both literally and metaphorically. As Drew Leder has pointed out, “While in one sense the body is the most abiding and inescapable presence in our lives, it is also essentially characterized by absence. That is, one’s own body is rarely the thematic object of experience” (1). Part of what has always interested me about somatography is that in it, the body, which is taken for granted when it performs normally, comes to the fore, thematically and otherwise: the occasion for writing, and central concern, is a somatic aberrancy, and the narrative arc typically involves somatic changes—or attitudes toward them. And yet, in the print medium, the body is not “there” on the page to be seen. It may be described in some detail, and the reader may form a mental image of it,

Is There a Body in This Text?  37 but that image is not literally inscribed by the author. So it is not always available for inspection to the consumer. What Peter Mendelsund has said of fictional characters I would say is also true of the subjects of text memoirs: [They] are physically vague—they have only a few features, and these features hardly seem to matter—or, rather, these features matter only in that they help to refine a character’s meaning. . . . These features don’t help us truly picture a person. . . . [They] are [thus] ciphers. (30–31) But while, according to Mendelsund, fictional “narratives are made richer by [the] omission [of bodies],” one could argue that this omission impoverishes written somatographies. In contrast, as Elisabeth El Refaie says, “Graphic memoirists are in the unusual position of having to visually portray themselves over and over again, often at different ages and stages of development, and in many different situations. Thus, all autobiographical comics artists are in the course of their work, constantly being compelled to engage with their physical identities” (62). Autobiographical comics artists are of necessity also self-portraitists. Graphic narrative, then, promises to fill in a lacuna that is striking even in written autosomatography: the absence of (the image of) the affected body. Of course, what’s anomalous about an impaired body is not always apparent to the eye, and even when it is, it can be disguised. Ian Williams has astutely addressed this aspect of the visual depiction of illness, distinguishing among conditions that are manifest (like deformity), concealed or concealable (like STDs), and invisible (like depression) (121–129). So the graphic medium affords the self-portraitist greater control over selfimage than verbal text, on the one hand, or photography and video, on the other. Textual memoirists cannot show their bodies; photographic or video self-portraitists cannot hide theirs. There are, of course, circumstances when it may be advantageous for the body to be invisible, or scrubbed of some detail in graphic somatography. Some conditions, like Kaposi’s sarcoma and facial deformity, are so hard to look at that visual images might be too distracting, too off-putting, for maximal reader engagement. But graphic memoirists have great discretion about selfdepiction; they may minimize or disguise a manifest anomaly, or they may literally picture an impairment that is not apparent in real life. As numerous critics have noted, the medium is particularly well-suited to the depiction of mental states—like anxiety, anger, fear, sorrow—not only through facial expressions but also through emanata. The medium offers disability memoirists enormous creative freedom and potential power. The key distinction of graphic narrative, its ability to show the body, puts it somewhat at odds, however, with a major tenet of critical disability studies: the “social model,” which distinguishes between

38  Is There a Body in This Text? impairment, which is found in aberrant aspects of the body (paralysis, say, or blindness) and disability, which is found in environments (social, legal, architectural, or attitudinal) that disadvantage those with impairments (a lack of ramps, say, or of Braille texts). The thrust of the social model has been to divert attention from the anomalous body—as not in need of “fixing”—to the disabling environment—as in need of alteration for accommodation. So, while there may be nothing inherently problematic about the visual depiction of impaired bodies, graphic memoir might seem inconsistent with the aim of deflecting attention from supposedly defective bodies and highlighting disabling aspects of the environment. Recently, however, some disability theorists have begun to criticize the social model for eliding (and implicitly denying) the embodied experience of impairment—for example, pain and the fear of degeneration. The social model, they say, may silence those who suffer, discouraging candid testimony and inhibiting autosomatography. For these reasons, I see graphic somatography as emerging at a significant moment. I believe that the medium has a great deal to offer precisely because of its inherent inclusion of the image of the body. In the graphic medium, the body cannot be omitted, and it cannot be ignored. As Amelia De Falco has said, “While all somatography may attend to bodily experience, the visuality of graphic narrative creates powerful opportunities for exploring and communicating embodiment and its repercussions” (225). Moreover, according to Susan Squier, “In their attention to human embodiment . . . comics can reveal unvoiced relationships, unarticulated emotions, unspoken possibilities, and even unacknowledged alternative perspectives” (cited in De Falco 225). Therein lie the importance and the promise of the medium. But although I welcome the advent of the graphic medium and am enthusiastic about its potential, I am not altogether keen about its actual achievement so far. I realize that this puts me at odds with leaders in the field, which is growing rapidly as measured by published scholarship and conferences, so I have tried to interrogate my mixed response to graphic memoir. Some of my reservations may be extrinsic to the medium. Consider the following as “Confessions of a Textist.” Although I grew up a reading comic strips—funny ones, at least, like Peanuts, Pogo, Calvin and Hobbes—and still read them, I did not grow up reading comic books. A salient fact here is that both of my parents were secondaryschool English teachers. I don’t remember that comic books were explicitly banned from our house, but we certainly didn’t have them around. So my experience of comic books was limited to what I read at the homes of friends, or at the barber shop while waiting to be shorn—mostly, things like Archie and Nancy rather than superhero comics. In the 1960s and 1970s, when I was in college and graduate school, I was aware of, but not really attracted to, underground comics. (I was always rather turned off by R. Crumb.) So, unlike many in the field, I have not been a lifelong

Is There a Body in This Text?  39 fan of comics. Other personal characteristics—my gender and my age (seventy)—may also come into play. But I attribute some of my disappointment to the medium itself. And one central concern issue is precisely how bodies are depicted. To develop an earlier point, the body is present in graphic narratives in a number of ways. Most obviously, as El Refaie says, graphic memoirists must depict their body in the text. Less obviously (assuming selfauthorship), the body of the memoirist is on the page in trace form as well, in the drawn line itself. Usually, we don’t think about the line in comics (unlike in high art) as a reflection of the artist’s body. But the medium is digital in the now neglected etymological sense: hand-made, produced with the fingers. And this feature may be particularly salient in somatography, wherein a medical condition may affect the drawn line: palsy and tremor would be obvious examples. Indeed, Peter DunlapShohl’s My Degeneration. A Journey through Parkinson’s illustrates just this dynamic. In addition to depicting Parkinson’s as its own monstrous body, it exposes his condition through a quavering graphic line. The narrative traces his “degeneration” quite literally, then. Blindness can come into play in a similar way. On this page of Al Davison’s The Spiral Cage, he draws attention (pun intended) to the potent body-image nexus with a demonstration of technique that interrupts the narrative and gives the reader rare glimpses of his hand(s) at work, as it were (Figure 4.1). Davison was born with spina bifida and suffers from ME, or myalgic encephalomyelitis (chronic fatigue, to Americans). The latter condition sometimes causes temporary blindness. Here he juxtaposes a self-portrait drawn while blind (upper left) with an image of his left hand drawn after regaining his sight. Next to those are images of his childhood self, which are far less realistic than his images of his adult self in the middle of the page; he thus cleverly adjusts his graphic style to the age of the body being represented; form enacts content. In turn, these images in the middle panel differ from most of those of his adult self in the text because they were drawn with his left hand in an attempt to recover his earlier remarkable ability to draw and write (simultaneously) with both hands. So this page nicely depicts—and I would say somatically enacts—a repudiation of the culture that tried to normalize him in childhood. It is a bravura demonstration of graphic somatography. (I would not be surprised if the literature is someday enriched by an amputee memoir drawn not by hand but by foot.) In addition to representing the body, and manifesting the hand of the artist, we could say that the graphic medium also reflects the eye of the artist. By that I mean only that a graphic memoir’s style is inherently visual and, ideally, recognizably distinctive of its author’s “vision.” Of course, writers also have individual styles, but we apprehend those through our intellects rather than through our eyes. A given text may be printed in any of a number of fonts, and book design is important in reception, but

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Figure 4.1  Al Davison, The Spiral Cage, Blind and Sighted Drawing. Source: Artwork © Copyright Al Davison-TAG! Reprinted by permission of Al Davison.

Is There a Body in This Text?  41 these aspects of the material object generally do not reflect the taste, the hand, or the eye of the author. In any case, our eyes merely decode print, whatever the font. Graphic memoir is different in this way: it directly reflects the body of the memoirist and his “vision”—his way of seeing and representing the world—and it appeals to “readers” through their eyes. It is an inherently sensuous, and thus somatic, medium. Indeed, it is likely that our brains process graphic narrative differently from text narrative. Our eyes certainly do. For better or worse— I would say, better and worse—I am able to read very fast, so fast that when I read written texts, I have to make a conscious effort not to skim and skip. But with the graphic medium, skipping and skimming are not really possible. Granted, the writing in graphic memoirs is relatively uncomplicated; captions and dialogue generally consist of short, simple sentences, which we can consume quickly. So the textual dimension of graphic narrative may be less demanding of readers than written narrative. But its visuality requires careful scrutiny and attention. Our eyes cannot simply track a continuous stream of words; each panel requires our eyes to stop and scan it before moving on to the next. And the relation between text and image is often not as simple as it first seems. So graphic narrative makes unique demands on our minds and our bodies. But the most important of these reflections of the author’s body is no doubt the first: its graphic depiction. In Understanding Comics, Scott McCloud helpfully illustrates a continuum of styles of representation from the quasi-photographic to the highly abstracted or stylized (28–29) (Figure 4.2). (Note that Davison’s page contains images from quite a large swath of this continuum.) McCloud claims that simplification amounts to amplification, and further, that abstraction entails universality (31), which maximizes reader identification. “The cartoon is a vacuum into which our identity and awareness are pulled . . . an empty shell that we inhabit which enables us to travel in another realm. We don’t just observe the cartoon, we become it” (36). To illustrate this, he points out that his self-image in the text— his avatar—is quite stylized; for contrast, he inserts a realistic image of himself (36). I quite agree that in this critical work, the details of his appearance are irrelevant and might be distracting (Figure 4.3). McCloud may be right when he says, “When you look at a photo or a realistic drawing of a face, you see the face of another . . . When you enter the world of the cartoon you see yourself” (36). But I would argue that genre matters, and in memoir generally, and in graphic somatography particularly, “universality” is not the point. Quite the contrary: visual abstraction may be counterproductive to reader engagement with memoir subjects. I think that what the reader should encounter in memoir is exactly the face—and the body—of another, of a particular other. Notice how, in the shift from “realism” to “cartoon,” characteristics like race, age, and

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Figure 4.2 “Graphic Continuum.” Excerpt from p. 29 from Understanding Comics by Scott McCloud. Source: Copyright © 1993, 1994 by Scott McCloud. Reprinted by permission of HarperCollins Publishers.

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Figure 4.3 “Cartoon as Vacuum.” Excerpt from p. 36 from Understanding Comics by Scott McCloud. Source: Copyright © 1993, 1994 by Scott McCloud. Reprinted by permission of HarperCollins Publishers.

44  Is There a Body in This Text? even gender are minimized or erased. I certainly find myself more engaged with texts in which bodies are detailed and relatively realistic. (I’ve been told that this amounts to a genre[d] bias for “adult auteur” comics; that is, comics intended for adults and drawn with care by talented graphic artists.) So while we can answer my titular question, “Is there a body in this text?” in the affirmative for all graphic memoirs, for me the more salient question is, “Is there a particular (human) body in this text?” I add the word “human” because of the possible use of avatars or visual substitutes, which I find also counterproductive. The example of Art Spiegelman’s Maus comes to mind; I confess that I find its use of animal stand-ins for humans, species for nationalities, somewhat problematic. I recognize that there are circumstances in which it may be appropriate and uniquely expressive in graphic narratives to ascribe animal characteristics to, or to use animal avatars in place of, human characters. For example, in The Story of My Tits, Jennifer Hayden draws her mother with antlers to signify how alien she seemed after her breast cancer diagnosis. But this depiction seems to reflect unfortunate, if understandable, self-protective distancing. Similarly, Kaisa Leka’s self-presentation as a mouse in I Am Not These Feet demonstrates the graphic medium’s ability to screen the actual body (her malformed feet) from readers’ eyes. But in this case, the graphic veiling of her actual legs seems to obviate the amputation that she chose to undergo. What her prosthetics replace, then, are not deformed human feet but normal-looking, if stylized, cartoon feet. Rather than removing the stigma from her condition, then, Leka releases herself from it, leaving the stigma in place—in fact, arguably strengthening it by suggesting that her legs had been too horrid to be seen, even in this flexible medium. So I suggest that if the great advantage of the graphic memoir of illness and disability is that it features the body in the text, for greatest effectiveness—and affectiveness—the body ought to be recognizable as a particular human’s— manifestly a thing of flesh, blood, and bone, a truly corporeal body. To put my observations in a larger context, just as McCloud locates imagery along a continuum from quasi-photographic to highly abstract depictions, so when I read graphic narratives, I situate them between written texts, on the one hand, and photographic texts, on the other. It may be my textism that sometimes makes me think, “This graphic memoir is fine, but I know of a more effective written narrative of the same condition.” But I don’t think bias accounts for my sometimes thinking, “This graphic memoir is adequate, but I know of, or can imagine, a more effective photographic depiction.” So, for example, I am struck by the lack of visual images of post-surgery breasts in the graphic narratives of breast cancer I am familiar with. In contrast, consider Exploding into Life, a breast cancer narrative that supplements diary entries by the cancer patient Dorothea Lynch with photographs by her partner and survivor, Eugene Richards. It is perhaps the most haunting breast cancer narrative I have read. For me, Richards’

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Figure 4.4 Eugene Richards, “After chemotherapy, Dorchester, Massachusetts, 1979”. Source: © 1979 Eugene Richards, courtesy of the artist.

photo of Lynch huddled on the floor of her bathroom is more powerful than any reference to, or depiction of, nausea in the graphic cancer memoirs I’ve encountered (Figure 4.4). To turn to the graphic medium, Miriam Engelberg’s Cancer Made Me a Shallower Person is engaging on a certain level; as its title suggests, it mocks the idea that mortal disease should deepen or ennoble us (an idea that adds insult in the form of moral obligation to the injury of illness). And it is refreshingly irreverent on a number of topics: e.g., cancer etiquette, the language of eulogies (in which the dead are always “full of life”), the cheery illness brochure, and the problematic term “survivor” (with its implicit qualifier “so far”). Her deliberately naïve visual style—with characters depicted sketchily, in two-dimensions—may be appropriate for her light take on her experience. But consisting as it does of a series of short comic strips, Engelberg’s book constitutes “comics” in the sense of “the funnies.” I can’t take it very seriously as a memoir because of the way her humor distances her (and thus the reader) from her somatic experience. Perhaps more to the point, it reflects the unfortunate tendency of some graphic somatography to sanitize illness. For example, in her multi-panel depiction of chemo nausea, the changes in her condition barely register graphically; without the captions (e.g., “frozen muscles in face”), one would have no idea what she was going through (Figure 4.5).

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Figure 4.5 “Chemo Nausea.” Excerpt from p. 34 from Cancer Made Me a Shallower Person by Miriam Engelberg. Source: Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.

Similarly, the book’s only image of her breasts is a pre-surgery one in which they are drawn as two-dimensional U-shapes (Figure 4.6). Finally, the only image of a tumor occurs in a strip critiquing the tendency of nonpatients to compliment her on how good she looks (Figure 4.7). Brian Fies’ memoir about his mother’s lung cancer, Mom’s Cancer, is far more creative in its use of the repertoire of comics. But consider his

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Figure 4.6  “Pre-surgery Breasts.” Excerpt from p. 97 from Cancer Made Me a Shallower Person by Miriam Engelberg. Source: Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.

representation of an experience that may be traumatic for many cancer patients—even though it is a function not of the cancer but of the treatment—losing one’s hair, which may be especially unpleasant for women. The process may be gradual, but the end-result is a drastic change. In a one-page chapter called “Told You So What” (39), Fies’s mother rationalizes her smoking in a monologue that takes six panels to complete; from panel to panel, her hair gets shorter until she is egg-bald in the last one.

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Figure 4.7 “Visible Tumors.” Excerpt from p. 107 from Cancer Made Me a Shallower Person by Miriam Engelberg. Source: Copyright © 2006 by Miriam Engelberg. Reprinted by permission of HarperCollins.

For me, Fies’s depiction of this progression as a gradual shortening of his mother’s hair is problematic both for being false to the reality and for entirely lacking shock value. Memoirs like this, which minimize the

Is There a Body in This Text?  49 unpalatable aspects of illness and sanitize the illness experience, fail to realize the potential of the medium (Figure 4.8). I find another phenomenon in some graphic somatography both puzzling and disappointing: what I can only call self-infantilization. By this I mean the depiction of the adult self as a child, or at least as visibly younger than we know the depicted self to be. I find this in a number of texts. One is Jeffrey Brown’s Funny Misshapen Body (which hardly ever depicts his body as misshapen, or even visibly changing as his weight fluctuates—another of its shortcomings as somatography). But I’ll illustrate it in Julia Wertz’s The Infinite Wait (Figure 4.9). On this page, she includes an image of herself vomiting into a toilet, then slumped on the bathroom floor with a flushed face. I find the vomiting panel quite anodyne, in part because of the graceful curve of her back. Nothing here conveys the convulsiveness and unpleasantness of actual vomiting. But what I refer to as self-infantilization is found in the panels above, which feature a conversation between her and her physician. Her physician is depicted with sufficient detail to render her a particular person, and an adult. In contrast, Wertz appears to be a girl,

Figure 4.8  Brian Fies, Mom’s Cancer, “Told You So What.” Mom's Cancer. Source: © 2006 Brian Fies.

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Figure 4.9  Julia Wertz, The Infinite Wait, Self-infantilization. Source: Reprinted by permission of Judith Wertz and Koyama Press.

an effect created by the button nose, oversized eyes, and stylized hairdo. This disparity prevails throughout the book: the other characters are always drawn in far more detail, more mimetically, than she. As a result, they appear to be “people,” whereas, though her expression changes somewhat (mostly having to do with her eyes), “Wertz” remains to me a mere cartoon character, rather than a distinct individual, much less an

Is There a Body in This Text?  51 anguished adult. Oddly, the use of such images is sometimes defended as labor-saving, avoiding the tedium of drawing oneself in every panel. That may be true, but here, Wertz draws everyone but herself in more detail, not saving that much labor. In any case, “labor saving” is hardly an aesthetic or ethic justification. In short, I just don’t see Wertz’s body in this text. Narratives like this make me wish that “comics” would be more serious—not unfunny, much less solemn, but possessing gravitas—and that graphic somatography would be, well, more graphic (in the sense of vivid and even explicit). Far more affecting to me are those graphic memoirs that depict recognizable individuals rather than self-caricatures. Graphically, this is a function of more detail, shading, and three-dimensional modelling, which endows bodies with literal (i.e., three-dimensional) depth. Realistically rendered, detailed backgrounds help, as well. Examples would include Paul Karasik and Judy Karasik’s The Ride Together, Judith Vanistendael’s When David Lost His Voice, David Small’s Stitches, Joyce Farmer’s Special Exits, and Al Davison’s The Spiral Cage. Amelia De Falco argues that graphic memoir is especially conducive to the depiction and validation of caregiving. She makes the excellent point that graphic somatography may be uniquely equipped to render not just human embodiment but our resultant embeddedness in intimate personal relations—whether chosen or not. I would suggest that the medium best represents caregiving when it frankly addresses its sometimes-messy corporeality, and I think that is better done by texts in a high-mimetic register. Of her examples, Joyce Brabner and Harvey Pekar’s Our Cancer Year qualifies, especially since it includes rare and quite shocking images of physical abuse by a caregiver (admittedly not drawn by either “author,” as the graphic element was outsourced). So does Joyce Farmer’s Special Exits, though she sometimes depicts her carers with somewhat implausible smiles. I am less sure about De Falco’s final example, Sarah Leavitt’s Tangles. There’s much that I like about Tangles, including its candor about incontinence. But I find her images of intimate care somewhat sterile and sanitary. I am not arguing for the inclusion of scratch-and-sniff decals to make graphic memoir multisensory, but I would like to see more in the way of distinguishing detail. For me, Leavitt’s style is a bit too delicate and, well, sketchy to have real power.1 One could justify the sketchiness of the mother’s image as an expressive view of Alzheimer’s, but her depiction does not differ significantly in this respect from that of the other characters—until she is near death. For me, a revealing moment occurs when Sarah and the family gather around her dying mother, and Leavitt depicts herself drawing her mother and her sister (Figure 4.10). Notice the difference here in the visual style used to depict her mother on the opposite sides of the two panels. The differences are quite subtle— a bit more modeling to give the image on the right more depth, a bit more detail to move the face from cartoon to portrait. Only at this point

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Figure 4.10  Excerpts from Tangles: A Story about Alzheimer's, My Mother, and Me. Source: Copyright (©) 2010 by Sarah Leavitt. Used with the permission of Freehand Books (Calgary, AB) and Skyhorse Publishing (US), and by permission of Samantha Haywood (international).

does her mother’s image draw me in; only at this point does she become a particular person. Only at this point, then, am I emotionally engaged. Indeed, I am moved by the literally pains-taking effort involved in rendering her mother as fully alive and present, just as she is about to die. As discussed earlier, Davison draws in more than one mode or register, some quite mimetic, some quite fantastic. But the memoir is always grounded in a candid depiction of a visibly disabled and at times enfeebled

Is There a Body in This Text?  53 masculine body—in the following image not even able to get back into bed. The highly detailed self-images fully expose the author’s misshapen body, his well-developed torso barely supported by spindly, knock-kneed legs (Figure 4.11). Although Vanistendael’s When David Lost His Voice is apparently a graphic novel,2 I conclude with it because it uses the graphic medium so creatively to convey the experience of cancer diagnosis and treatment. Its opening sequence is brilliant. The first panel shows a disembodied hand beginning to draw a shape; in the successive panels, the shape becomes the outline of a human head, with the nasal cavity, the trachea, the esophagus, and the larynx exposed and labelled, as in a medical textbook. Finally, the hand endows the larynx with a tumor, highlighted by a red arrow. At that point it becomes apparent that the hand is that of a doctor drawing an explanatory picture for a patient to whom he is giving a dire diagnosis—stage-three cancer. In the page’s last panel, hair and facial features are superimposed on the outline, individualizing the image; it becomes the head of a particular person—this patient, the protagonist, David. Because no doctor would complete the sketch in this way, we can say that here the graphic artist takes over from the physician, as it were. This panel thus depicts the patient’s projection of his image onto the abstract head, and thus his recognition of the head as his. (Not incidentally, it also reverses McCloud’s sequence from the quasi-photographic to the abstract.) Here, the patient owns his diagnosis (Figure 4.12). The next two pages depict David’s emotional reaction to the diagnosis—his progressive assimilation of it. As such, they also demonstrate the ability of the graphic narrative to compel the reader to slow down, to dwell on what is happening. On the first of these pages, panels alternate between those that show his doctor conveying additional information and those that depict David wordlessly absorbing his doctor’s words— or not: the dichotomy between the spoken medical discourse and the patient’s silent response is quite stark, reinforced by the reader’s being alternately put in the doctor’s position, as he looks at David, and David’s, as he regards his physician (Figure 4.13). Despite what is no doubt meant to be a reassuring prognosis—“That means you can make it”—the top of the next page has a single, centered panel in which David grips his face in dismay and fear, perhaps squeezing back tears. Below, we see his physician as David “sees” him; his face and his query, “David?” are blurred, attenuated, and devoid of color—as though David has begun to faint. On the following page, focus and color return, as David gently and tentatively touches his own throat, newly diagnosed as containing a cancerous tumor (Figure 4.14). Later in the narrative, we get quite graphic images of David’s throat opened up by a surgeon; at this point, his self-protective gesture is

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Figure 4.11  Al Davison, The Spiral Cage, Realistic Nude Self-portrait. Source: Artwork © Copyright Al Davison-TAG! Reprinted by permission of Al Davison.

sufficient to convey his anxiety. But when David learns he will have to undergo chemo followed by radiation, his image fades away as he absorbs the implications of his treatment regimen. Here the graphic

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Figure 4.12  Judith Vanistendael, When David Lost His Voice, Diagnostic Sketch. Source: Reprinted by permission of Judith Vanistendael.

medium powerfully conveys the shock of a cancer diagnosis and prognosis (Figure 4.15). As an inherently sensuous medium, graphic narrative maximizes its effect when it employs color, which David gorgeously does. Vanistendael’s color is subtly graduated, like watercolor painting, to endow figures with some three-dimensional modeling, rather than solid across a given shape, as is the case with most popular comics and many graphic narratives (e.g. Cancer Vixen by Marisa Acocello Marchetto). Moreover, in this short

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Figure 4.13 Judith Vanistendael, When David Lost His Voice, Diagnostic Interview. Source: Reprinted by permission of Judith Vanistendael.

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Figure 4.14 Judith Vanistendael, When David Lost His Voice, Subjective Reaction. Source: Reprinted by permission of Judith Vanistendael.

58  Is There a Body in This Text? sequence she first fades the image of the physician, suggesting David’s inability to process his distressing news, then fades David’s image, anticipating the penetrating effects of chemo and radiotherapy. All of this helps readers to empathize with the patient.

Figure 4.15 Judith Vanistendael, When David Lost His Voice, Therapeutic Regimen. Source: Reprinted by permission of Judith Vanistendael.

Is There a Body in This Text?  59 Moreover, like cinema, graphic narrative benefits from its ability to move the reader from one perspective and point of view to another, at least virtually. Thus, in David’s first few pages the shifting point of view requires that its readers adjust, as if we are moving in space. Indeed, reader response to graphic memoir is more complicated somatically than to text narrative; it engages the readers’ eyes and even proprioception more actively. It is thus all the more appropriate for the engaging depiction of bodily experience, especially those of illness and disability. The visual “reception” of disabled bodies has been a vexed issue, at least in Western culture. Susan M. Schweik has documented efforts made to effectively ban obviously disabled people from public spaces by means of “ugly laws.” Such laws militated against the public presence of such people on the grounds that they were unsightly, like blighted buildings, offensive to others’ senses and sensibility. Rosemarie Garland-Thomson has explored how, even when not banned from public spaces, disabled bodies may be disciplined by the gaze of others. She has produced an anatomy of staring—its various types and motives and interpersonal dynamics. Whereas “ugly laws” sought to banish the disabled, hide them from sight, GarlandThomson explores what happens when they are allowed to circulate publicly: her scenarios are interactive, allowing for some staring back and for more humane, mutually respectful engagement between the parties. Graphic memoirs may illustrate encounters between starers and starees: staging such interactions is one way of recruiting the graphic medium in a campaign to challenge to heteronormative gazing and oppressive behaviors. But the relationship within the graphic medium between readers (who are also viewers) and characters (who are viewed) is not interactive in the same way. Here, the responsibility is upon the graphic artist to do the work of subverting or interrupting normative ocular habits. The medium has considerable potential for liberatory representation. But my position is that the graphic medium is not necessarily, not inherently counterdiscursive. It offers a range of graphic styles (well encapsulated by McCloud’s continuum) not all of which are advantageous. There is a place for stylized representation, even the avatar: stylization may serve to highlight a particular trait or, conversely, to minimize one, as the artist sees fit. And we’ve seen that stylistic representation can effectively communicate what is in real life not visible, such as disordered moods or states of mind. But visual distortion may also imply or convey monstrosity. In this essay, I have advocated for disabled bodies to be represented in considerable detail, as distinct three-dimensional individuals, and inflected for emotion from panel to panel. To put it simply, I find disabled characters more engaging and empathetic when drawn as fully human, their bodies rendered realistically. Indeed, I was heartened to read that the disabled portraitist Riva Lehrer requires her medical-humanities students “to depict the specifics of every inch of the bodies [of specimen anomalous fetuses],” then locate and research a living person with the

60  Is There a Body in This Text? same condition, in order to help “these future doctors to stop seeing the specimens as historical artifacts or tragic medical problems.” At its best, graphic medicine can do the same for the larger population. Anything less risks reinforcing marginalization and objectification.

Notes 1 I have similar reservations about Roz Chast’s memoir of dealing with her aging parents. Her use of her signature New Yorker cartoon style troubles me somewhat in this context: it’s one thing to use it to depict generic neurotics, another to use it to depict her own parents. For me there is a disjunction between her characteristic style and her subjects—and the genre of graphic somatography. 2 “The narrative is deliberately and completely fictional. My first book was autobiographical and that was so intense that I decided to make only fiction” (Vanistendael, “Permission”).

Works Cited Brabner, Joyce, and Harvey Pekar. Our Cancer Year. New York: Four Walls Eight Windows, 1994. Print. Brown, Jeffrey. Funny Misshapen Body. New York: Simon & Schuster, 2009. Print. Chast, Roz. Can’t We Talk about Something More Pleasant? New York: Bloomsbury, 2014. Print. Davison, Al. The Spiral Cage: An Autobiography. Los Angeles: Active Images, 2003. Print. De Falco, Amelia. “Graphic Somatography: Life Writing, Comics, and the Ethics of Care.” Journal of Medical Humanities 37, 2015: 223-240. Print. Dunlop-Shohl, Peter. My Degeneration: A Journey through Parkinson’s. State College: Pennsylvania State University Press, 2015. Print. El Refaie, Elizabeth. Autobiographic Comics: Life Writing in Pictures. Jackson: University Press of Mississippi, 2012. Print. Engelberg, Miriam. Cancer Made Me a Shallower Person. New York: Harper, 2006. Print. Farmer, Joyce. Special Exits: A Graphic Memoir. Seattle: Fantagraphic Books, 2014. Print. Fies, Brian. Mom’s Cancer. New York: Abrams Image, 2006. Print. Foss, Chris. “Reading in Pictures: Re-visioning Autism and Literature through the Medium of Manga.” Disability in Comic Books and Graphic Narratives. Eds. Foss, et al. London: Palgrave Macmillan, 2016, 111-126. Print. Garland-Thomson, Rosemarie. Stating: How We Look. New York: Oxford University Press, 2009. Print. Grandin, Temple. Thinking in Pictures, and Other Reports from My Life with Autism. New York: Doubleday, 1995. Print. Hayden, Jennifer. The Story of My Tits. San Diego: IDW, 2015. Print. Howells, William Dean. “Autobiography: A New Form of Literature.” Harper’s Monthly 119, October 1909: 795–798. Print.

Is There a Body in This Text?  61 Karasik, Judy, and Paul Karasik. The Ride Together: A Brother and Sister’s Memoir of Autism in the Family. New York: Washington Square, 2003. Print. Koch, Christina Maria. “‘When You Have No Voice, You Don’t Exist’?: Envisioning Disability in David Small’s Stitches.” Disability in Comic Books and Graphic Narratives. Ed. Foss et al. London: Palgrave Macmillan, 2016, 45–59. Print. Leavitt, Sarah. Tangles: A Story about Alzheimer’s, My Mother, and Me. New York: Skyhorse, 2012. Print. Leder, Drew. The Absent Body. Chicago: University of Chicago Press, 1990. Print. Lehrer, Riva. “Where All Bodies Are Exquisite.” The New York Times. The New York Times Company, 9 August 2017. Web. Leka, Kaisa. I Am Not These Feet. Helsinki: Absolute Truth, 2008. Print. Lynch, Dorothea, and Eugene Richards. Exploding into Life. New York: Aperture, 1986. Print. Marchetto, Marisa Acocello. Cancer Vixen: A True Story. New York: Pantheon, 2009. Print. Mendelsund, Peter. What We See When We Read. New York: Vintage, 2014. Print. McCloud, Scott. Understanding Comics. Harper Perennial, 1994. Print. Schweik, Susan M. The Ugly Laws: Disability in Public. New York: New York University Press, 2010. Print. Small, David. Stitches: A Memoir. New York: Norton, 2009. Print. Squier, Susan. “So Long as They Grow Out of It: Comics, the Discourse of Developmental Normalcy, and Disability.” Journal of Medical Humanities 29, 2008: 71-88. Print. Vanistendael, Judith. When David Lost His Voice. Trans. Nora Mahony. London: SelfMadeHero, 2012. Print. Vanistendael, Judith. “Permission to Quote Vanistendael.” When David Lost His Voice.” Received by Author, 2 August 2017. Wertz, Julia. The Infinite Wait and Other Stories. Toronto: Koyama, 2012. Print. Williams, Ian. “Comics and the Iconography of Illness.” MK Czerwiec et al., Graphic Medicine Manifesto. University Park: Pennsylvania State University Press, 2015, 115–152. Print.

5 Genre Matters Form, Force, and Filiation*

“Genre” has long been a troublesome term in literary studies generally, and it is no less so in the late-blooming field of life-writing studies. And yet it would be ill-advised to abandon it. This essay will argue that for all its inadequacies, a notion of genre is indispensable in analysis of life writing, whether historical or contemporary. The key may be to emphasize function over form in reconsidering genre. The first stage of my argument presents an overview of some problems built into the notion of genre. Next, I focus on the value of genre analysis in a range of cases. Finally, I demonstrate the utility of the concept of genre in my current research project, an analysis of recent memoirs of fathers. The problems inherent in genre analysis are evident even in handbook definitions of the term; according to the entry on genre in M. H. Abrams’s Glossary of Literary Terms, “the genres into which works of literature have been classified at different times are very numerous, and the criteria on which the classifications have been based are highly variable” (75–76). To put it less positively, not only have generic terms proliferated over time; they have often been vaguely or inconsistently defined and applied. Indeed, the very criteria for determining membership differ in kind from genre to genre. Some genres are identified primarily in terms of their formal features. (The sonnet is defined in terms of its length, metre, and rhyme scheme.) Others are distinguished by reference to content as well as form. (The epic is associated with a serious tone and elevated style but also a certain kind of hero.) Still others are defined primarily in terms of their subjects. Life-writing genres generally fall into this third category. Indeed, autobiography is conventionally distinguished from biography as follows: a biography can be about anybody (living or dead) other than its author, while autobiography can only be about its singular—indeed, presumably unique—subject, its author. The term “genre” is also confusing because it can apply both to very broad categories of writing (such as the tripartite division—bequeathed to us by classical rhetoric—of all literature into lyric, narrative, and dramatic * Published originally in LifeWriting (Australia) 2.2 (2005): 123–140. Reprinted by permission of Taylor & Francis.

Genre Matters  63 modes) and to very small categories, such as haiku. As a result, it is not always clear whether a particular form constitutes a “genre,” a “subgenre,” or a “sub-sub-genre.” (The prefix necessarily carries negative connotations that may be resented by devotees of particular forms: one critic’s genre is another’s subgenre.) Moreover, and more important, definitions that may once have seemed clear have become blurred; boundaries that once seemed distinct have been breached. This may be particularly the case with life-writing genres; perhaps the most significant recent paradigm shift in life-writing studies has been to acknowledge that one person’s autobiography is inevitably someone else’s biography. That is, it is generally admitted that one cannot write about oneself without representing others: hence the contemporary valorization of “relational narrative.” Not surprisingly, then, just as the prestige of particular literary forms has waxed and waned in the millennia since Aristotle, so has the reputation of the notion of genre itself. Issues of genre get less attention and respect than they once did; genre analysis is far less prominent in literary studies than it was when the Chicago critics roamed the campus. (Indeed, recent genre analysis typically focuses on non-literary writing and issues in teaching writing.) In any event, the notions that genres are pure, stable, rule-bound, and distinct compel little credence today. Rather, as Aviva Freedman and Peter Medway have observed, “We . . . need to see genres as . . . shifting, revisable, local, dynamic and subject to critical action” (15). Contemporary students of genre tend to see literary forms, then, as plastic, fluid, and perhaps inherently hybrid entities that may emerge, evolve, and eventually die out. Further, the study of genres today tends to situate them in historical, social, cultural, political, and—especially in the case of non-literary genres—institutional contexts. The prevailing impulse is to tie linguistic and substantive similarities to regularities in human spheres of activity. In other words, the new term “genre” has been able to connect a recognition of regularities in discourse types with a broader social and cultural understanding of language in use. (Freedman and Medway, 1) In sum, then, the contemporary emphasis is on “understanding genre as social action” (2)—genre as function rather than form (or form as function). In life-writing studies, as in literary studies generally, the notion of genre has been not so much sustained as modified and rehabilitated. Consider this assessment of the state of genre study in 1994 by Aviva Freedman and Peter Medway in their introduction to Genre and the New Rhetoric: In general, there has not been much critical analysis of questions such as the following. How do some genres come to be valorized? In whose interest is such valorization? What kinds of social organization are

64  Genre Matters put in place or kept in place by such valorization? Who is excluded? What representations of the world are entailed? The absence of such questions is the ideological limitation we see as most needing to be addressed in the next stage of genre studies. (11) In life-writing studies, these questions—though they can perhaps never be definitively answered—have been searchingly addressed in the last decade. Traditionalists, in fact, might argue that this has been true to a fault—that is, that critical emphasis has shifted from the “literary” to the political and ideological. In any case, genre’s social, political, and ideological implications have certainly not escaped scrutiny in life-writing studies of late. In my view, attention to genre in life writing is at once insufficient and indispensable; it doesn’t always serve our purposes fully, and yet we can’t, and shouldn’t, do without it. Various phenomena attest to the continuing pertinence and usefulness of genre terms in the field. Insofar as the current critical preference for the umbrella terms “life writing” and “life narrative” is a function of the increasing diversity of texts studied by scholars and the impulse to deny any hierarchy among them, the ascendancy of the terms may seem to reflect the decline of the notion of genre, as if contemporary critics see life writing as a large, undifferentiated body of texts. On the contrary, I would argue that the ascendency of the umbrella term reflects the vitality of life writing generally and the recognition of hitherto overlooked kinds of life writing (and new forms, like weblogs). Most obviously, perhaps, feminist critics have reevaluated forms of life writing associated with women—such as the diary. Less obviously, an upsurge in writing about bodies in crisis has drawn attention to personal narratives of illness and disability. The use of the terms “life writing” and “life narrative” does not deny generic distinctions but rather reflects an impulse toward catholicity and toward reconsideration of traditional definitions and distinctions. Critical attempts to reckon with new or ignored forms of life narrative have led to a proliferation of new terms for sub-genres, as documented by the twenty-five page appendix of Sidonie Smith and Julia Watson’s Reading Autobiography that defines “Fifty-two Genres of Life Narrative.” Among these are a significant number of recent coinages devised to describe new phenomena: for example, autoethnography, autogynography, autothanatography, autotopography, biomythography, periautography, relational autobiography, scriptotherapy, testimonio. One of these neologisms, “autopathography,” was my own coinage. Recovering Bodies: Illness, Disability, and Life Writing was prompted by my interest in an emerging autobiographical discourse centered on medical conditions and impairments once considered stigmatic. Exploring this new development, I felt a need to mark off a particular set

Genre Matters  65 of narratives with its own single-word term (and not just for convenience in writing about it). In devising one, I simply substituted the more specific morpheme “patho” for the generic “bio” in “autobiography.” I have come to regret that particular coinage, however. As I conceive of it, autopathography is typically, if not essentially, “anti-pathography”; that is, those who wrote about their illnesses and disabilities in the late 20th century challenged the medical scripts and/or the cultural constructions attached to their conditions. And in the term “autopathography,” the “auto” was meant to suggest the counter-discursive, and even postcolonial, implications of defining one’s condition in one’s own way. But various individuals, including Arthur Frank (who has written, as well as studied, illness narrative), have convinced me that the “patho” root carries gratuitously negative connotations and thus fails to convey my understanding of the genre—a case of life writers speaking back to literary critics who have retroactively labeled their writing. Despite my regret at having created what I have come to see as a misnomer, I think this example attests both to the vitality of life writing and to the inescapability and (ideally) the utility of genre terms and genre analysis. The universe of life writing texts has expanded dramatically in two distinct ways over the course of my thirty-year career. First, ignored or obscure texts have been recovered and reevaluated; second, the contemporary literary marketplace has been very receptive to life narrative. Indeed, a good deal of the proliferation of genre terms in lifewriting studies is a function of critics and scholars investigating and analysing new “niche” genres, such as recovery narratives and narratives of troubled childhoods. A further illustration of the rehabilitation of the notion of genre in lifewriting studies is the tendency to explore non-literary phenomena as life writing. A compelling illustration of this trend was the publication in 1996 of Getting a Life: Everyday Uses of Autobiography, which explored genres (or sub-genres) as diverse and humble (and in some cases as utilitarian) as “personals,” c.v.’s, talk shows, genealogy, twelve-step narratives, and even DNA testing. This attests not only to the ingenuity of critics and their careful scrutiny of life narratives but also to the continual evolution of life writing in response to social, cultural, and historical change—indeed, to its pervasiveness in contemporary Western culture, at least. To study life writing today, then, is to come to (generic) terms with it in a literal way; often a necessary early step is to determine what to call a text in question. For that matter, the notion of generic hierarchies, though somewhat unfashionable, is not without contemporary adherents. One powerful impulse in the “memoir backlash” seems to have been to privilege the novel on the grounds that fiction is more “imaginative,” “literary,” and “artistic” than non-fiction—a response that suggests that all genres are not created equal. One of the bases of that impulse, though not always manifest, was the notion that “writers” write novels while “anyone” can

66  Genre Matters write a memoir (or, worse, have one written); scorn for the memoir has been partly motivated by professional writers’ sense of competition from amateurs in the critical and economic marketplace. Hence the dismay at the success of the so-called “nobody memoir” produced by a person, hitherto obscure, with the audacity to write a life that lacks the sort of distinction that once might have justified that act. One irony of this response is that it reflects a nostalgia for a nonexistent golden age of “meritocratic” autobiography. Another is that a good many of the successful memoirs in recent years have in fact been written by “writers,” as evidenced by their possession of MFAs (Lucy Grealy, for example). Increasingly, the “creative” writer’s first book, which once might have taken the form of an autobiographical novel, is now presented as autobiography proper (though often highly novelistic in technique). Today the challenge of the second book in a writer’s career, which used to be to write a “real” novel, may be how to write a sequel to a memoir while still quite young. (Lucy Grealy, whose Autobiography of a Face took the form of a full-life narrative, never solved this problem, while Mary Karr followed her popular childhood memoir The Liar’s Club [1995] with a sequel, Cherry: A Memoir [2000], that dealt with her years as a “tween” and teenager.) Rather than making genre analysis obsolete, the tendency on the part of contemporary writers to fuse once distinct genres requires an equivalent flexibility on the part of critics. Thus, although individual life narratives are increasingly seen as blending elements from various genres, comprehension of their hybridity depends on naming and identifying the various sub-genres in play. So abandonment of a notion of pure genres does not mean an abandonment of sensitivity to generic distinctions. In fact, the notion of generic hybridity can help to illuminate classic as well as contemporary works. Consider Thoreau’s Walden. There is not, and there may never be, critical consensus on the genre of Walden; indeed, some critics would say the text is “sui generis” (literally of its own genre, which is tantamount to saying of no genre). Yet I find it useful, even necessary, to teach Walden in terms of its relation to earlier genres. I often start with the observation that Thoreau’s narrative prose (as distinct from his poetry, essays, and journals) can be divided into two genres: the journey—an account of travelling through a particular landscape (The Maine Woods, A Week on the Concord and Merrimack Rivers, Cape Cod)—and the sojourn—an account of living temporarily in a particular place (Walden). To call Walden a sojourn, however, is obviously insufficient, for the complex volume includes some of Thoreau’s poems, draws on his extensive journals, and contains chapters that read like essays; it is quite literally multi-generic. Still, thinking of the book as a sojourn helps to demonstrate its connection to colonial genres—such as narratives of exploration, captivity, settlement, and conversion—that Thoreau knew well and was evidently updating and transforming. When teaching Walden, then, I encourage students to think of it as partaking of

Genre Matters  67 a number of colonial and early 19th century American genres. In other words, in order to help students understand it in context I find it helpful to teach Walden as something. This is not to deny but rather to explore, and attempt to account for, its generic richness. The larger point is that a sense of the distinct genres that Thoreau was mixing, altering, and extending helps to illuminate how his masterwork attempts to intervene in history. For my pedagogical purposes, then, to quote John Swales, “genre analysis is valuable because it is clarificatory, not because it is classificatory” (37). The point is not to find the “right” or even “best” pigeonhole into which to place Walden; it doesn’t fit neatly into any. Indeed, the point is less to determine what it is—it isn’t any one particular thing—but rather what it’s doing, by showing that Thoreau was drawing upon forms various forerunners had used to shape their experience. The point is to interrogate literature’s form as a means of understanding its function and its force: how particular genres encode or reinforce particular values in ways that may shape culture and history. In this case, Walden’s connections with earlier genres help Thoreau restage (on a microcosmic scale) crucial episodes in American history to suggest that they might have, or still could, “come out” differently. So whereas in colonial captivity narratives, a white settler is forced to live among and like Native Americans, in Walden Thoreau moves voluntarily into the woods to demonstrate that the desirability of emulating indigenous people (in the simplicity of their housing, for example). To grapple with the genre of Walden is to begin to understand it as social and political action. Indeed, I would argue that one cannot understand its ideological implications without some sense of its generic complexity. Notions of genre are still indispensable to life-writing studies in at least two ways. First, genre terms are necessary if we wish merely to reconstruct and understand the history and development of life writing. Second, the boundaries between genres, though not marked by bright lines, still matter in a number of ways—not the least of which are legal and ethical. Admittedly, life writing is undeniably “fictive” (inventive) even when it is not “novelistic” (characterized by direct dialogue and implausibly specific descriptions of remembered scenes). Thus, as Smith and Watson note in Reading Autobiography, “the boundary between the autobiographical and the novelistic is . . . exceedingly hard to fix.” And much of the time, neither authors, nor publishers, nor readers wish to insist on this boundary. Yet the difference between life writing and pure fiction continues to matter. Smith and Watson insist that there is a distinction, in principle if not always in practice: A life narrative is not a novel, although calling life narrative “nonfiction,” which is often done, confuses rather than resolves the issue. Both the life narrative and the novel share features we ascribe to fictional writing: plot, dialogue, setting, characterization, and so on.

68  Genre Matters Further complicating matters, many contemporary writers are interested in blurring the boundary between life narrative and narration in the first-person novel. Yet differences that have historically arisen between them are crucial to understanding how autobiographical writing is a self-referential mode. (Reading, 7) To articulate the latter proposition they cite Philippe Lejeune’s notion of “the autobiographical pact.” For Lejeune, they note, two things indisputably distinguish autobiography and, by implication, a wide range of life narratives, from the novel: the “vital statistics” of the author, such as date and place of birth and education, are identical to those of the narrator; and an implied contract or “pact” exists between author and publisher attesting to the truth of the signature. (Reading, 8) There are times when the line between the novel and life writing, however indistinct, cannot be crossed with impunity; the consequences can be severe. This is the case with the autobiographical hoax, which is typically perpetrated across racial or ethnic lines: someone falsely claims, in autobiography, an ethnic or racial “identity”—such as indigeneity—once stigmatized but now valorized in some quarters precisely because of its history of oppression. (Because the former stigma now provides cachet, there can be advantages to claiming, or faking, certain identities.) A classic instance of this phenomenon is the case of the “Holocaust memoir” Fragments: Memories of a Wartime Childhood. Its author, who calls himself “Binjamin Wilkomirski,” is a Swiss man who claims to have been incarcerated, as a Jewish child in Poland, in Nazi concentration camps. Initially, the book was highly praised; it was even awarded a prize for Holocaust literature. Yet questions about its authenticity eventually led to its being withdrawn, investigated, and disavowed by its publisher. The agency that initially placed the book arranged for a formal inquiry by a historian, Stefan Mächler. The result of his scrupulous and exhaustive research, The Wilkomirski Affair, unmasked the author as an illegitimate child of Swiss parentage who apparently became convinced, by “memories” recovered in the process of psychotherapy, that he was a Jewish Holocaust survivor before being adopted by middle-class Christian parents in Switzerland. Had this man, Bruno Dössekker, presented his narrative as a novel, he would have avoided the scrutiny that ultimately exposed his (self)deception. On the other hand, had he presented his story as fiction, his narrative would have generated far less interest and earned far less praise (and money) than it did as Holocaust testimony. Whether his narrative was

Genre Matters  69 presented to the reading public as a novel or as an autobiography was not a matter (merely) of classifying it and determining where it should be placed in bookstores (or on best-seller lists); it involved a claim about the text’s ontological status, its rhetorical power, and its value as testimony (which proved to be nil). As a genre, Holocaust testimony performs a certain kind of valuable cultural “work,” and false testimony undermines that project. Genre matters because it entails (moral and political) force as well as form. My current research project also suggests both the inadequacy and the utility of genre terms. For a variety of reasons—as much personal as academic—I have recently become interested in the large number of memoirs of fathers produced during the last twenty years in North America. When I initially turned my attention to this phenomenon, which seems to have escaped sustained scholarly notice, I quite quickly amassed a bibliography of about 100 published book-length narratives (and one documentary film). This body of work may not be unprecedented, but if an equal number of such narratives was produced in the preceding two decades (1965 to 1985), when my interest in life writing was taking shape and assuming a professional dimension, I was unaware of it, and few pre1985 narratives have turned up in my searches of databases. (Nor have there been nearly as many memoirs of mothers, although there have been some memorable ones, mostly by daughters.) I like to think, then, that I may have identified a cultural phenomenon of some significance. In order to isolate, assess, and analyse it, however, I need a critical vocabulary. When possible, I draw upon existing genre terms; if they prove insufficient, I try to devise useful—that is, clarificatory—new ones. Before proceeding further, let me say that I find my initial formulation “memoirs of fathers” accurate but inadequate. First, I am inclined to add what ought to be redundant: by their sons and daughters. (That is, I am not interested solely in what Richard Freadman refers to as “The Son’s Book of the Father” [15].) Although sons greatly outnumber daughters as memoirists of fathers, I am interested in memoirs by both sexes, in part because of what comparison along gender lines may yield. More important for my purposes here, I am not sure that it is appropriate to call what I have isolated a “genre,” or even a “subgenre.” As I have already noted, one entry is a film, not a book. But more than that, I find it insufficient to regard this set of texts as a single entity. Because there is so much variety within it, I think of it as a category or class or set of texts. What I am suggesting, then, is that not all significant categories of texts warrant the term “genre.” In any case, I am inclined to divide this body of work into more manageable, and perhaps more significant, categories by bringing other life-writing terms to bear on it—for example, the distinction between “full-life” and “single-experience” narratives. Most biographies and many autobiographies are, or aspire to be, full-life narratives, beginning with the subject’s birth and, in the case of biography, ending with the

70  Genre Matters subject’s death. In the category of single-experience narratives are found subgenres like the sojourn or the slave narrative (which significantly, but ironically, ends with the narrator’s achievement of freedom). Thus, while a spiritual autobiography (even a short one like Jonathan Edwards’s Personal Narrative) is a full-life narrative, a conversion narrative is a single-experience narrative. Part of what interests me about the memoir of the father is the difficulty (or to put it differently, the presumption) of narrating the life of someone who may have “had a life” before giving life to the memoirist; that is, I am interested in the problem of narrating that part of the father’s life to which the memoirist has no immediate access. Perhaps wisely, not all memoirs of fathers attempt this. Among the many narratives in my bibliography are those that attempt to narrate the father’s entire life course and those that confine themselves to the author’s lifetime or, even more specifically, the author’s childhood. Further, some books about fathers take the form of “portraits” rather than either of these two sub-genres. Portraits tend to be essayistic and impressionistic; rather than narrating the father’s life, or even the course of the author’s relationship with the father, they limn the character of the parent through representative, but not sequential, stories. (Calvin Trillin’s Messages from My Father, exemplifies this category; there is some unobtrusive chronology in its structure, but it is essentially organized as a series of chapters devoted to different paternal traits.) Though useful for initial triage, these distinctions leave much unsaid and unexplored. As I survey the material initially, I find myself assigning works to additional categories or groups which do not line up neatly with the tripartite division already suggested, which involves a distinction in scope. For example, many memoirs of fathers have to do with famous fathers. Having a celebrated father may not be a blessing—indeed, the evidence of this testimony is that it is more likely to be a curse— but it presents an opportunity to write a marketable memoir. Thus, both Patti Davis (The Long Goodbye) and Maureen Reagan (First Father, First Daughter: A Memoir) have written memoirs of their father, Ronald Reagan. Conversely, being a well-known writer affords an opportunity to write a marketable memoir of one’s otherwise anonymous father, as Sue Miller, Philip Roth, Paul Auster have done. But I am inclined to call these two sets of texts categories rather than genres unless I discover some commonality beyond the pre-existing celebrity of the subject or the author. This is not to say that these are not significant clusters of texts, just that I am not sure that they are sufficiently distinct to be considered genres. More interesting to me are distinctions that may cross these somewhat superficial boundaries. Here I am thinking of what seems to be the driving impulse behind the generation of the texts because it makes little sense to speak of genre without at some point addressing the purposes, utility, and politics of the forms in question. When I described my project to her, a friend of mine remarked, “Well, everyone has a father.” (I think

Genre Matters  71 she meant to assure me that my new project might have more popular appeal than my previous ones.) That’s true, but very few people take the time and trouble to write books about their fathers. Interesting questions then arise. Why do those who write write (aside from the aforementioned factor of celebrity)? Are the memoirists’ motives as various as the literature might suggest at first glance? Are the fathers whose lives get written different from the rest? Are the children who write their fathers’ lives different in some way from those who don’t? Or is the salient difference to be found not in the fathers or in the memoirists but in the relations between them? My initial perusal of the literature suggests (not surprisingly, perhaps) that memoirs of fathers tend to emerge from relationships that were experienced (by the writers) as deficient in some way or other. Indeed, of the several dozen narratives that I have read so far, perhaps the only one that seems to describe anything approaching an ideal father-son relationship is Paul O’Neill’s My Dad and Me: A Baseball Memoir, in which the former New York Yankees outfielder recounts a stereotypically “All-American” boyhood—lots of sports played in a Midwestern backyard and strong bonding between father and son, two generations of professional baseball players. The limitations of such a story, however, are suggested by the fact that once the narrative reaches O’Neill’s professional career, which began when he was eighteen, his relationship with his father necessarily becomes attenuated and recedes into the background: father and son are together only during the off-season or when his father can attend a game. This narrative of a close and mutually gratifying fatherson relationship—however appealing and sincere the book may be—is difficult to sustain even for the length of a short volume. What I am suggesting, then, about this literature is that it seems predominantly driven not by the desire to memorialize a beloved or admired father but by the impulse to shore up, repair, or compensate for a flawed relationship. That is, the books are best read not as static representations of fathers, whether favourable or not—indeed, very few are successful at rendering their subjects as complex human beings—but rather as attempts to claim or even fashion a relationship with a father who is somehow absent, because of death, geographical distance, or emotional reserve. I am not suggesting that the narratives are addressed to those fathers; in some cases, the fathers’ death prevents that. Rather, the narratives make public claims to, and about, the relationships between the authors and their fathers (and in the works I have read so far, the fathers are all biological fathers). For this reason, I have invented the term “narratives of filiation” for the texts in which I am interested. The term “filiation” has two distinct but related meanings that are pertinent here. First, it refers to “the condition or fact of being the child [not necessarily the son, though the root is the Latin filius, son] of a particular parent” (not necessarily a father); second, in law, it refers to “judicial determination of paternity” (American

72  Genre Matters Heritage Dictionary). By calling the texts in question narratives of filiation, rather than merely memoirs of fathers, I seek to highlight their relationality, their rootedness in a sense of entitlement and their intent to enact some kind of engagement with the father, whether living or dead. Not all memoirs of fathers, then, constitute narratives of filiation— only those written out of a certain sense of need or lack—yet the impulse to claim a filial relationship accounts for the vast majority of the texts in what I believe is a significant development in late 20th century life writing. In other words, while the umbrella term “memoirs of fathers” accurately names what these narratives are (and the tripartite division among full-life narrative, single-experience narrative, and portrait addresses aspects of their form), the term “narratives of filiation” gets at what most of them seem to be trying to do. I take this to be in the spirit of Carolyn Miller’s approach to genre as social action: A genre [is] a complex of formal and substantive features that create a particular effect in a given situation. Genre, in this way, becomes more than a formal entity; it becomes pragmatic, fully rhetorical, a point of connection between intention and effect, an aspect of social action. (25) The notion of genre as social action is more obvious and easier to substantiate with non-literary genres, which are more rule-bound. Literary texts tend, by definition, to be less “generic,” but that is not to say that we can overlook their pragmatic and ideological effects. What accounts for the emergence of father memoirs generally and the filiative impulse particularly is another matter, which my project will attempt to address. The demography of the North American “baby boom” generation is an obvious factor. As the parents of this large and influential cohort age, become ill or disabled, and die, baby boomers ponder their parents’ lives and, not incidentally, their own mortality. When parents require care from their children, it is women who provide most of it and who write the narratives of that process. Indeed, an incipient sub-genre of memoirs of fathers is the dementia narrative, which is typically written by a daughter who becomes the designated caregiver. (Examples are Sue Miller’s The Story of My Father and Elizabeth Cohen’s The House on Beartown Road.) But most memoirs of fathers have been written by sons. This may reflect the emotional dynamics of the post-war middle-class nuclear family, often characterized by an absent bread-earning father and an available home-making mother. In any case, the genre has obvious roots in patriarchy and in patrilinearity. (One of the glaring ironies of this is that often the authors’ mothers are

Genre Matters  73 literally more present, if not more prominent, in the narratives than their fathers, the narratives’ nominal subjects.) Although my project is still in an early stage, it has become apparent to me that it may comprehend two distinct subgenres corresponding to two conflicting impulses. The first I call the narrative of affiliation, because the driving force of the form seems to be to assert or strengthen a connection with the father. The dynamics of this subgenre may be best illustrated by two admittedly extreme cases, narratives by children whose illegitimacy is the primal source of their assertion of filiation. These narratives are not merely about the fathers; rather, they are narratives in which the children claim what has been denied, their fathers’ paternity. One example is the film already alluded to: in My Architect: A Son’s Journey, Nathaniel Kahn, the illegitimate son of the renowned architect Louis Kahn, does not so much celebrate his father’s work—although he takes advantage of his visual medium to do just that—as make a public claim that he is his father’s son and that therefore Louis Kahn is in some sense his architect. A similar case is the contemporary memoir by Essie Mae WashingtonWilliams, the illegitimate, mixed-race daughter of former US Senator Strom Thurmond. Thurmond was famous not only for his longevity—he died at the age of 100 after serving as one of South Carolina’s US senators for some fifty years—but also for his strong opposition to desegregation in the South. His racism notwithstanding, he fathered a daughter with an African American woman who was a servant in his parents’ household. That daughter, whom he privately supported but never publicly acknowledged, published Dear Senator: A Memoir by the Daughter of Strom Thurmond only after he died. (Despite its title it is not couched as a letter to Thurmond.) Although one of its manifest purposes was to “out” him as her father, it was not necessary to write a memoir to do so. But the memoir powerfully attests to the disparity between their emotional investments in each other. As she grew up, Thurmond arranged to see her occasionally (and secretly) and provided her with intermittent, but substantial, financial help, while she followed his public career attentively on an ongoing basis (though with understandably mixed feelings). After his death, then, she felt entitled, even compelled, to claim her place in his family with an act of collaborative life writing. The second sub-genre is driven by a contrary impulse, that of disaffiliation. This motive is most obvious in the sub-genre of narratives by survivors of incest and abuse. Typically, overwhelmingly, these are written by women who were sexually abused by their fathers, but I have come across one example by a sexually abused son (In My Father’s Arms, by Walter A. de Milly, III), and numerous sons have claimed physical or emotional abuse by their fathers. In the larger category of narratives of disaffiliation are narratives in which the authors accuse their (usually deceased) fathers

74  Genre Matters of wrong-doing against others. An extreme case may serve to exemplify this phenomenon. In a recent book, a retired Los Angeles homicide detective, Steven Hodel, makes the case (and I use the phrase advisedly) that his deceased father was the notorious “Black Dahlia Avenger”—the perpetrator of a unsolved series of killings of women in and around Los Angeles after World War II. Indeed, Hodel believes his father guilty of murders never officially ascribed to the Black Dalhia Avenger. Although the impulse here seems to be to condemn, even to disown, the father, it is important to note that the author is not content to deny his paternity by remaining passively silent. Rather, he seems to believe it is morally incumbent upon him to expose and condemn his father. And there is a powerful sense of filiation implicit in this belief; children feel personally responsible for censuring their fathers. In any case, they feel that their testimony has particular authority (significantly, not just in cases in which they were directly victimized). So the narrative of disaffiliation is a function of, rather than a denial of, filiation, “the condition or fact of being the child of a certain parent.” Affiliation and disaffiliation, by definition, may seem to involve “work” that is primarily psychic, relational, and self-referential—identification and dis-identification. And yet that does not dictate that a critic’s approach should be psychoanalytical. For a daughter (or a son) to accuse a father of incest or sexual abuse is not merely to denounce a parent who may have seemed to others a paragon of paternity but also to interrogate the function of patriarchy in the nuclear family. Psychic work may be inseparable from social and cultural work. The body of work I am now exploring is far more various and complex than I have been able to suggest here. I do not claim that it could not be approached in ways that did not foreground generic terminology. And I certainly do not claim that all of the works in question can be placed in one subgenre or another; often affiliative and disaffiliative impulses are found in the same work. But I hope that this account of how genre terms have been of use to me in the initial stages of a new project may demonstrate the continuing utility of a notion of genre in the study of life writing. I have tried to show how deploying existing terms and inventing new ones as called for has helped me sort through and think about what may be a significant new set of life narratives. Thus, having come across a critical mass of texts that share some similarity, I find it useful to isolate it by naming it and to analyse it by sorting it out into subdivisions. At the same time, I do not want to ignore its connections with adjacent or prior forms. (Indeed, it occurs to me that this particular project by its very nature tends to mirror the enterprise of generic analysis insofar as both are concerned with genealogy, with formative influences and resistance to them.) What is important is not classifying but clarifying life writing, exploring what genres are in order to understand they do.

Genre Matters  75

Works Cited Abrams, M. H. “Genre.” A Glossary of Literary Terms, 5th ed. Fort Worth: Harcourt Brace, 1993, 75–78. Print. Auster, Paul. The Invention of Solitude. New York: SUN, 1982. Print. Cohen, Elizabeth. The House on Beartown Road: A Memoir of Learning and Forgetting. New York: Random House, 2003. Print. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin, 1997. Print. Davis, Patti. The Long Goodbye. New York: Knopf, 2004. Print. de Milly, Walter A, III. In My Father’s Arms: A True Story of Incest. Madison: University of Wisconsin Press, 1999. Print. Edwards, Jonathan. “Personal Narrative.” The Norton Anthology of Literature, 5th ed. Vol. 1. Gen. Ed. Nina Baym. New York: W.W. Norton, 1998, 441–452. Print. Freadman, Richard. Shadow of Doubt: My Father and Myself. Northcote, Victoria: Bystander, 2003. Print. Freedman, Aviva, and Peter Medway Eds. “Locating Genre Studies: Antecedents and Prospects.” Genre and the New Rhetoric. London: Taylor and Francis, 1994, 1–20. Print. Gosse, Edmund. Father and Son: A Study of Two Temperaments. New York: Oxford University Press, 1974. Print. Grealy, Lucy. Autobiography of a Face. Boston: Houghton Mifflin, 1994. Print. Hodel, Steve. Black Dahlia Avenger: A Genius for Murder. New York: Arcade, 2003. Print. Kahn, Nathaniel, director. My Architect: A Son’s Journey. HBO, 2003. Karr, Mary. Liars’ Club. New York: Viking, 1995. Print. Karr, Mary. Cherry: A Memoir. New York: Viking, 2000. Print. Mächler, Stefan. The Wilkomirski Affair: A Study in Biographical Truth. Trans. John E. Woods. New York: Schocken, 2001. Print. Miller, Carolyn. “Genre as Social Action.” Genre and the New Rhetoric. Freedman and Medway, 23–42. Print. Miller, Sue. The Story of My Father: A Memoir. New York: Knopf, 2003. Print. ONeill, Paul. Me and My Dad: A Baseball Memoir. New York: Morrow, 2003. Print. Reagan, Maureen. First Father, First Daughter: A Memoir. Boston: Little, Brown, 1989. Print. Roth, Philip. Patrimony: A True Story. New York: Simon and Schuster, 1991. Print. Smith, Sidonie, and Julia Watson, eds. Getting a Life: Everyday Uses of Autobiography. Minneapolis: University of Minnesota Press, 1996. Print. Smith, Sidonie, and Julia Watson. Reading Autobiography: A Guide for Interpreting Life Narratives. Minneapolis: University of Minnesota, 2001. Print. Swales, John. Genre Analysis: English in Academic and Research Settings. Cambridge, England: Cambridge University Press, 1990. Print. Thoreau, Henry David. Maine Woods. Ed. Joseph J. Moldenhauer. Princeton: Princeton University Press, 1972. Print.

76  Genre Matters Thoreau, Henry David. A Week on the Concord and Merrimack Rivers. Ed. Carl Hovde et al. Princeton: Princeton University Press, 1980. Print. Thoreau, Henry David. Cape Cod. Ed. Joseph J. Moldenhauer. Princeton: Princeton University Press, 1988a. Print. Thoreau, Henry David. Walden. Ed. J. Lydon Shanley. Princeton: Princeton University Press, 1988b. Print. Trillin, Calvin. Messages from My Father. New York: Farrar, Straus and Giroux, 1996. Print. Washington-Williams, Essie Mae and William Stadiem. Dear Senator: A Memoir by the Daughter of Strom Thurmond. New York: Regan Books, 2005. Print. Wilkomirski, Binjamin. Fragments: Memories of a Wartime Childhood. Trans. Carol Brown Janeway. New York: Schocken, 1996. Print.

6 Memoir and (Lack of) Memory Filial Narratives of Paternal Dementia*

After a recent visit with her parents, one of whom is beginning to show signs of dementia, my wife exclaimed, “I hope I never lose my memory!” To which I replied, “No, you hope I never lose my memory.” My point was, of course, that the lot of the caregiving partner may be more difficult than that of the person with dementia. After all, the very losses that ravage people with dementia in some ways cancel themselves out. In his recent book, The Forgetting: Alzheimer’s: Portrait of an Epidemic, David Shenk points out that, despite the fickle nature of the illness, in which moments of startling lucidity can punctuate a long decline, its course can be divided loosely into the awareness stage and the post-awareness stage. Those in the post-awareness stage may be said to suffer less than those in the preceding stage, who are haunted both by what they’ve already lost and what they dread losing. Caregivers, however, never progress to a post-awareness stage. Shenk concludes that the best they can do is to try to find significance in their ordeal and that of their loved one: While scientists [do] battle with this disease, victims and their families [have] the opposite task: to make a certain peace with it, to struggle to understand the loss, come to terms with it, create meaning out of it. (32) As indicated by Shenk’s subtitle, it is common to refer to Alzheimer’s disease as an “epidemic.” Because Alzheimer’s is not communicable, it is not an epidemic according to the strict definition of the term, “an outbreak of a contagious disease that spreads rapidly and widely,” but it certainly qualifies as an epidemic in the looser sense of “a rapid spread, growth, or development.” The present and anticipated costs of Alzheimer’s have made it a high priority for clinical and drug research. But barring a medical miracle—the sudden development of a vaccine or an effective * First published in New Essays on Autobiography and the Body. Ed. Chris Stuart and Stephanie Todd. Newcastle: Cambridge Scholars Press, 2009, 223– 240. Reprinted by permission of Cambridge Scholars Press.

78  Memoir and (Lack of) Memory treatment—Alzheimer’s awaits half of those who reach their late 80s. Although its progressive shutting down of brain function does eventually cause death, the condition is survivable for long periods of time; indeed, among late-life diseases, Alzheimer’s threatens to disable the largest number of people for the longest period of their lives—especially in countries, like the U.S., where life expectancy is high and rising. “The stay of Alzheimer’s sufferers in a nursing home is, on average, twice as long as that of other patients” (Shenk 66). And that is only part of the picture. As Shenk points out, The unique curse of Alzheimer’s is that it ravages several victims for every brain it infects. Since it shuts down the brain very slowly, beginning with higher functions, close friends and loved ones are forced not only to witness an excruciating fade but also increasingly to step in and compensate for lost abilities. (87) The burden of caregiving is such that it is sometimes said to precipitate a kind of dementia in caregivers themselves (91). The role of the caregiver can be devastating, for reasons Shenk concisely enumerates: The caregiver must preside over the degeneration of someone he or she loves very much; must do this for years and years with the news always getting worse, not better; must every few months learn to compensate for new shortcomings with makeshift remedies; must negotiate impossible requests and fantastic observations; must put up sometimes with deranged but at the same time very personal insults; and must somehow learn to smile through it all. The work shift in this literally thankless job lasts for twenty-four hours a day, seven days a week. . . . (87) Even this account of the caregivers’ lot may minimize its challenges, since it confines itself to emotional demands, eliding the logistical and financial dimensions of the process. Shenk may also be too optimistic in positing the love of the caregiver for the recipient of care. This may obtain in the best-case scenarios, but even there, love may be severely tested, and one suspects that many caregivers occasionally, or ultimately, fail the test. A Newsweek article on caregiving by adult children (referred to as “reverse parenting”) notes that “care is hardest for those whose parents did not parent well; that is, children are more likely to accept the role when they see it as reciprocal” (Kantrowitz and Springen 6). Like the proportion of the populace affected by Alzheimer’s, the amount of media attention devoted to it is constantly expanding. Countless articles on the condition have been published in medical

Memoir and (Lack of) Memory  79 journals and in mainstream newspapers and magazines; in 2004, the Alzheimer’s Foundation of America (AFA) launched a free quarterly publication, Vantage, aimed at caregivers. As Denise Grady noted in a New York Times op-ed piece, “It is telling, maybe a tacit admission of defeat, that a caregiving industry has sprung up around Alzheimer’s. Books, conferences and Web sites abound.” We should not be surprised, then, that in addition to clinical and journalistic writing about Alzheimer’s, life writing about it is also suddenly “on the radar” and very much on the rise. The least likely author of such narratives, of course, is the person with Alzheimer’s, because the condition would seem to preclude self-narration (and does, in its later stages). Nevertheless, several such memoirs have been published, notably Diane Friel McGowin’s Living in the Labyrinth: A Journey through the Maze of Alzheimer’s and Thomas DeBaggio’s Losing My Mind: An Intimate Look at Life with Alzheimer’s. Indeed, DeBaggio has published a sequel to his first account, When It Gets Dark. And in the last decade a new class of memoirs has also sprung into being: narratives of Alzheimer’s by family members, usually caregivers. Among the relatives of those with Alzheimer’s, who actually provides this care? In some cases, of course, partners, but spouses of the same age as those with Alzheimer’s are often disqualified by their own impairments. And many persons with Alzheimer’s (hereafter, for convenience, PWAs) lack living partners; typically, then, the onus falls on the offspring of the PWA. The extant personal narratives offer an interesting window on the epidemic as a cultural phenomenon, because the scenario represented by what I will call the visible (i.e., widely known) narratives (still relatively few in number) is not representative of larger demographic trends. In September 2007, an unscientific survey of the extant literature using the databases of Amazon. com and other on-line booksellers turned up more than forty published memoirs of Alzheimer’s written by a family member and prompted by, if not entirely concerned with, the intrusion of dementia into an otherwise ordinary life. This is a very recent phenomenon: the earliest of these dates from the early 1990s, and most were published after 2000. Publication of such memoirs is clearly a growth industry. The vast majority of these, however, have been in effect self-published (issued by outfits like Infinity, iUniverse, PublishAmerica, and AuthorHouse) or published by small presses with niche specialties, such as religion (Augsburg Fortress and Faithwalk), self-help (Authority), or large print (Thorndike). So while Alzheimer’s may be generating more and more memoirs, most such narratives are never reviewed nor widely advertised and therefore do not reach large audiences. Many have astronomically low Amazon. com sales ranks. (Interestingly, however, judging from reader comments and reviews, some nevertheless reach appreciative readers and serve to create a kind of virtual supportive group on the internet.) The demographics of the subjects of these memoirs are what would be expected in view of the fact that life expectancy (and thus the risk of

80  Memoir and (Lack of) Memory developing Alzheimer’s) is higher for women than for men: of the forty narratives, more than half (23) concern women. An analysis according to who writes the memoir—whether a partner or an adult child—reveals that more women (10) than men (8) had their stories told by their partners; similarly, more women (14) than men (9) had their stories told by adult children. Among the adult children writing about their mothers, there were twice as many daughters as sons; among adult children writing about their fathers, there were also twice as many daughters as sons. Thus, women are in the majority both as subjects (which would be predicted by the demographics of the epidemic) and as narrators (which would be predicted by the gendering of caregiving, the bulk of which is provided by women in contemporary American society). The titles of these narratives attest, on the one hand, to the losses caused and demands made by the condition—i.e., Where Is Jack?, Through the Wilderness, Into the Shadows, A Curious Kind of Widow, The Last Childhood, Death in Slow Motion—and, on the other, to a powerful impulse (more explicit in caregiving partners than in children) to find some element of hope or redemption in the experience—i.e., You Too Can Survive, Everything Will be Alright [sic], I’ll Never Wander Away, An Enduring Love Affair. The thrust of many of the narratives self-published by surviving spouses, male or female, is encapsulated in the poignant title of one: Love Conquers Alzheimer’s. The first memoir of someone with Alzheimer’s to come to my attention—and to achieve wide recognition—was Elegy for Iris, John Bayley’s memoir of his wife Iris Murdoch, which appeared first in the New Yorker in 1998, then as a slim volume a year later, and subsequently as a film (starring Judi Dench and Jim Broadbent) in 2002. But although Bayley’s remarkable memoir may have inspired Americans to produce Alzheimer’s memoirs (and presses to publish them), his contribution to the literature remains unusual in the amount of attention it garnered, which had a good deal to do with the fame of both its subject, a professional philosopher better known as a novelist, and its author, a well known literary critic and, like Iris, an Oxford don. It is also unusual (among visible memoirs) in its being written by a husband about his wife. Remarkably, almost ten years after the advent of Iris, not a single Alzheimer’s memoir published by a major American press and recognized by mainstream reviewers in the U.S. concerns a female subject. (Admittedly, they are still few in number.) On the contrary, all of the Alzheimer’s memoirs to have achieved substantial sales and media attention concern male subjects, and they are all written by their adult children, usually a daughter, who is usually the primary caregiver. Thus, there is a significant disparity between the demographics of the epidemic as a whole (and of its representation in all published life writing) and the demographics of what might be called its literary representation. The scenario typified by the literary memoirs is not at all indicative of the

Memoir and (Lack of) Memory  81 incidence and impact of the condition in the general population. (I suspect that this is true of much life writing concerning illness and disability.) With that important caveat, I wish to examine a small selection of memoirs of paternal dementia: Jonathan Franzen’s “My Father’s Brain,” Elizabeth Cohen’s The House on Beartown Road, and Sue Miller’s The Story of My Father. All of these are visible memoirs, and all are of some literary quality. The scenario presented in these American narratives is radically different from Bayley’s: all of the book-length accounts are written by daughters about their fathers. Given the gendering of caregiving, perhaps we should not be surprised at the domination of this category of memoir by women writers; still, the fact that nearly all these narratives are by daughters may give us pause. For these women are typically middle-class members of the baby boom generation, who experienced firsthand, if they did not participate in, the Women’s Liberation Movement. The preponderance of female authors in visible Alzheimer’s memoirs is such that I have been tempted to call the phenomenon “demented dads and devoted daughters.” The alliteration highlights a dimension of the American literary life writing about Alzheimer’s that some will find appealing, others appalling. Some will view these daughters’ dedication to their senile fathers as touching reciprocation of paternal love; others will view it as troubling evidence of an unreconstructed patriarchy. The full significance of these narratives emerges only when they are seen not only as a subset of the memoir of illness and disability, which has burgeoned in the U.S. in the last twenty-five years, but also as a subset of a seemingly unrelated, but also new and growing category of narratives, which I refer to as filial narratives—that is, memoirs of parents by their sons and daughters. These are mostly written by members of the babyboom generation, who are being forced to confront their own mortality as they enter their sixties and their parents enter old age or die. And as many assume increasing responsibility for dependent parents—as they assume, that is, quasi-parental roles toward them—they are stimulated to reflect on the way they were parented and the extent to which they identify with their parents. Moreover, just when these baby boomers may seek to confirm, supplement, and investigate their memories of growing up, irreplaceable repositories of those memories become fallible and eventually unavailable, either through senility or through death. Simultaneously, but conversely, adult children may come to serve as surrogate memories for ailing parents. So memory and the loss of it are especially important motifs in this life writing. In this larger set of narratives, filial memoirs, there is also a gender imbalance: considerably more are devoted to fathers than to mothers. This stems from the fact that in the parental generation in question it was far easier for men than for women to “have a life”—that is, a life narratable according to conventional criteria of visible accomplishment or worldly success. In addition, my research suggests that when adult

82  Memoir and (Lack of) Memory children write memoirs of a parent, they tend to write about the absent or unavailable parent; this tendency also favors memoirs of fathers. In dementia narratives, of course, the issue is not the fathers’ absence from the household of the growing child; it is the fathers’ presence in the household of the adult child, which is a function of their disappearance into dementia. In any case, the complex renegotiation of family dynamics and the relational (re)construction of identity in these fraught circumstances are at the heart of the best of Alzheimer’s narratives. Although they may reflect the general concerns of an entire generation (perhaps uniquely inclined to think of itself as forever youthful), Alzheimer’s memoirs reflect the particular challenges of the Alzheimer’s caregiver. Indeed, typically, the narration is stimulated by, arises from, and may extend the project of giving care. Certainly, it is the performance of caregiving that usually authorizes the narrative—providing the narrator with an intimate perspective on the ailing parent and a privileged (if demanding) relationship with that parent. That is one reason that it is usually daughters who write memoirs of paternal dementia. Although the writing sometimes originates during the process of giving care—in the form of diary entries—it is typically not pursued in a consistent way until after the death of the subject—partly for lack of time, partly for lack of perspective. (John Bayley is again an exception; he not only wrote but published his account of his wife’s dementia while she was still alive.) Writing the narrative, then, is a way of grieving, of achieving—or at least approaching—emotional closure on a painful chapter of one’s own life, and of memorializing the dead father. Which is to say that although such narratives grow out of the process of caregiving, they also differ in nature and in purpose from the process that first impels them. One difference between providing care and narrating Alzheimer’s (and between narrating Alzheimer’s and narrating other disabling conditions in the third person) stems from what is generally regarded as the most threatening and tragic aspect of the illness: the way in which it seems to strip those affected of their memories, their personalities, their identities, and in the end their humanity. As Shenk points out, Alzheimer’s seems to destroy brain functions in the reverse order of their initial development, a process referred to as “retrogenesis.” It is thus common—and Shenk claims, not only inescapable but appropriate—to compare adults with advanced Alzheimer’s to children: The child analogy understandably rankles many caregivers. They are deeply offended at the suggestion that their mother or father or husband or wife is now to be regarded as a mere child. It feels like the ultimate insult. . . . But the comparison is a valid, and even necessary, one to make. Here is an instance where scientists fighting disease and caregivers trying to make peace with a human tragedy can come to some common ground: the science of retrogenesis can help caregivers

Memoir and (Lack of) Memory  83 forge a new understanding and appreciation of what their loved ones are going through. . . . By viewing their loved ones as reverting back to childhood abilities and mentalities, caregivers can establish a more humane formula for their care. Whether or not it feels demeaning, retrogenesis can be instructive. (126–127) This regression can be extremely discomfiting to observe and frustrating to deal with; the role of the adult child caring for a parent (especially a male parent) who behaves like a child is at the very least awkward. To narrate such a development obviously poses ethical challenges: how much of a parent’s decline into senility is it decent to reveal? How does an adult child avoid gratuitously patronizing—and infantilizing—a demented parent? A related issue has to do with the matter of memory. When filial narrative is undertaken—or at least anticipated—before the death of the parent in question, there is often an active engagement of the parent’s memory to evoke stories predating the child’s existence. (Think of Art Spiegelman’s Maus.) One decision to be made by any filial narrator is the extent of the parent’s life to be covered by the narrative. More than caregiving itself, the writing of a narrative can compensate for the loss of memory by inscribing a lasting, if not permanent, account of a life and a personality even as that individual’s personality and memory are eclipsed by Alzheimer’s. (One of the not inconsiderable effects of even the largely neglected self-published narratives is to put the lives of otherwise anonymous individuals on record.) This active countering of the loss of the parent’s identity by narrating at least some of the parent’s early life is a feature of the most rewarding narratives. It also serves an important rhetorical purpose in this class of narratives: it is one thing for an adult child to record the loss of a parent to Alzheimer’s; it is another for an Alzheimer’s narrative to give its readers some appreciation of what is being lost. Narratives that memorialize their subjects quite fully preempt the question that sketchier narratives sometimes raise: what makes this parent worthy of such devotion? Most dementia memoirs, visible or not, display certain conventional topoi or commonplaces. These include incontinence, incoherence, and aggression on the part of the parent; concern on the part of the caregivers about the parent’s driving, house-keeping, and diet (while the parent is still living independently); agonizing over whether, when, and where to institutionalize the parent; fear of inheriting Alzheimer’s and living the nightmare oneself; and anticipatory grieving for a person not yet dead. At the same time, the visible narratives are far from formulaic; there is considerable variety in approach. The sole narrative by a son, that by Jonathan Franzen, is distinct not only in the gender of its author but also in its genre, a New Yorker “Personal History” piece that is more essayistic than narrative. This may

84  Memoir and (Lack of) Memory have something to do with the fact that Franzen was not his father’s caregiver; his mother performed that role until her husband went into a nursing home. Franzen not only expresses little appreciation of her role; he takes her caregiving as an opportunity to ally himself with his father against his mother: his memoir is the site and occasion of considerable male bonding. Significantly, it takes its title, “My Father’s Brain,” from what Franzen portrays as an act of monumental insensitivity on his mother’s part: in a packet with her annual Valentine to her son, she sent along the autopsy report on his father’s brain. Opening the memoir with this gesture serves double duty. First, it aligns Franzen with his father as a victim of his mother’s tactlessness; second, it associates her with a kind of problematic contemporary materialism—according to which what matters is the brain, rather than the mind, let alone the soul. Not incidentally, the agenda of Franzen’s memoir involves rebutting that point of view. Despite its patriarchal gender politics, Franzen’s piece has merit as a kind of meditation on the New Yorker rubric under which it appeared, “Personal History,” insofar as it focuses on what, if anything, remained of his father’s distinctive personality as his Alzheimer’s “progressed.” Franzen is determined not to take the postmortem as the last word on his father’s fate. He acknowledges that during a five-week stay with his father while his mother was hospitalized he, Jonathan, was largely oblivious to what his mother had already identified as symptoms of his father’s dementia. But he insists that this was not solely a function of denial on his part: One of the basic features of the mind is its keenness to construct wholes out of fragmentary parts. . . . I think I was inclined to interpolate across my father’s silences and mental absences and to persist in seeing him as the same old wholly whole Earl Franzen. I still needed him to be an actor in my story of myself. (4) (italics mine) Thus, the son’s response to his father’s Alzheimer’s is characterized as the very antithesis of the condition—indeed, almost its remedy: the active restoration of the fading father by an act of filial mentation. This insistent quest for traces of the father’s essence also underlies Franzen’s close scrutiny of his father’s last hours, which yields one of the most (to me, at least) affecting deathbed scenes of this literature: Hour after hour, my father lay unmoving and worked his way toward death; but when he yawned, the yawn was his. And his body, wasted though it was, was likewise still radiantly his. Even as the surviving parts of his self grew ever smaller and more fragmented, I persisted in seeing a whole. I still loved, specifically and individually, the man who was yawning in that bed. And how could I not fashion stories

Memoir and (Lack of) Memory  85 out of that love—stories of a man whose will remained intact enough to avert his face when I tried to clear his mouth out with a moist foam swab? I’ll go to my own grave insisting that my father was determined to die and to die, as best he could, on his own terms. (13) This compulsion to find evidence of his father’s persistence is the key to Franzen’s memoir; it links the son’s early response to his father’s condition (the reconstruction of the whole from residual fragments) with the author’s later textual challenge to a claim about Alzheimer’s made by Shenk. Influenced by Morris Friedell, a retired sociologist with Alzheimer’s, who has argued that there may be something delicious in oblivion, Shenk suggests that in some ways it may actually be desirable to live in an eternal present (97). If there’s a silver lining in the cloud of Alzheimer’s, this is it: no memory, no nostalgia; no memory, no regrets; most important, no memory, no boring repetition. Rather, eternal novelty, surprise, and wonder—a second childhood, indeed. For Franzen, however, personality, selfhood, individual identity—all depend on the perpetuation, if not the awareness, of distinctive traits over time; for him, living in an eternal present is tantamount to suffering the erasure of selfhood. And so he unabashedly continues to seek—and to find—signs of the perseverance of paternal traits despite the corrosive effects of Alzheimer’s. There’s something masculinist in this response, and no doubt, given the heritability of Alzheimer’s, Franzen has a personal stake in his belief in the persistence of the essence of Earl. Franzen fils argues that his impression that his father’s condition was not serious during his five-week sojourn with him may have been partly a function of his father’s willful suppression of symptoms. Together, then, father and son collaborated to defy Alzheimer’s, to deny its losses. And in his memoir, the son carries on this somewhat quixotic quest. In the rest of the narratives to be discussed, all written by women, the narrative stance is typically more accepting of the father’s decline. Elizabeth Cohen is a journalist; she had written a domestic weekly column (“Close to Home”) for a local paper, and her book, The House on Beartown Road, grew out of columns devoted to her caring for her aging, failing father in her own home. In this role, Cohen—despite having an infant daughter and having been abandoned by that child’s father—did what her sister and her mother had separately not been able to manage. The House on Beartown Road is structured as a series of titled chapters covering a year during most of which Sanford Cohen lived with his daughter and granddaughter. Cohen did not have sole responsibility for her father the entire year. At times, a nanny came in to oversee both child and parent, giving Elizabeth time to write; at others, she sent Sanford to adult daycare (which he tolerated only as long as he misunderstood his role there: as soon as the former professor realized he was not there to

86  Memoir and (Lack of) Memory instruct the others, he refused to return); and eventually, his wife joined him in an assisted living facility nearby. Still, the year was punctuated with challenges large and small: the flight of Cohen’s young husband; episodes of paternal incontinence; his accidentally starting a fire in the house, as a result of which he was sent back to New Mexico; his reappearance on Beartown Road, after caring for him proves beyond his wife and his other daughter. Sanford Cohen had been a professor of economics and, as such, took great pride in his intellectual prowess; for individuals like him—and their families—dementia may be particularly difficult: My father’s intellect had defined him as a man. It also defined him as a husband. The loss of Daddy’s mental acuity was confounding to my mother. If he no longer knew who he was, who was she? What then, when he no longer knew her? It was beyond unthinkable. (19) This may shed some light on the asymmetrical gendering of filial dementia narrative: mental deterioration seems more threatening for those who do intellectual labor, and among the parents of the baby-boomers, most of these were men. At age 40, Cohen is exactly midway between her daughter’s and her father’s ages; she thus nicely embodies the predicament of the “sandwich generation.” Her memoir’s most distinctive feature is the odd ménage on Beartown Road, which juxtaposes the demented grandfather with his infant granddaughter, who is in some ways his intellectual peer. Obviously, this presents a strong risk of patronizing the father. But Cohen deftly avoids this pitfall. Granted, Sanford Cohen’s decline is particularly sad when seen against the backdrop of Ava’s rapid learning. (For much of the narrative, he cannot name her nor even remember her sex: he usually refers to her as “the little guy,” occasionally as “the one that fills the room with hurricanes” [55].) And yet, sad as it may seem, their intellectual parity makes them good companions, and their relationship is far less fraught than his relationships with his daughter or his wife. Having never known him without Alzheimer’s, his granddaughter has no standard against which to measure him and can regard him without pity or regret; his intellectual decline is no tragedy to her. Nor does Ava tire of her grandfather’s stories or repeated questions. So while being caught between two generations needing care might seem to impose a double burden on Cohen, it doesn’t always work that way. The presence of her daughter gives Cohen access to a redemptive vantage on her deteriorating father, and it can function similarly for the reader, as well. In this way, her narrative simultaneously realizes and disarms the parent-as-child trope. Still, a major concern of Cohen’s book is the inverse relation between her daughter’s intellectual growth and that of her father’s intellectual

Memoir and (Lack of) Memory  87 decline. Ava’s mind is developing fast, soaking up knowledge; Sanford’s is steadily losing capacity. One is accumulating, the other losing, memory. One is building selfhood, laying down the narrative line that is identity; the other is forgetting both his narrative and the identities of those around him, if not his own. Cohen’s sweet conceit, with which she ends the book, is that, as her daughter’s increasing mental skills surpass her father’s declining ones, his mental abilities are not vanishing but rather being transferred to the little one, as though by some law of the conservation of intellectual energy: The brain of my father and the brain of my daughter have crossed. . . . They look upon each other with fond familiarity. And they see each other heading to the place they have just come from. On his way out of this life, Daddy has passed her the keys. Instead of thinking about him losing the abilities to speak, to walk, and to negotiate the world, I like to think he has given them to her. (267) This is not literally true, of course, but Cohen takes comfort in her sense that in creating a structured learning environment for her daughter, she has also provided a supportive one for her father. When, toward the end of the year, he finally gets Ava’s name and sex right, Cohen takes pleasure and pride in his simple accomplishment. Perhaps more gratifying, he finally identifies Cohen correctly as his daughter, not his wife or a potential sexual or romantic partner. In achieving this identification, he re-identifies himself as well, reclaiming, if only temporarily, his place in the family unit. Understandably, Cohen takes some credit for, as well as great gratification in, this surprising development. Cohen’s narrative is also distinguished by its recurrent meditation on memory as a constituent of family relations and family history. This motif recurs in different keys. One has to do with Alzheimer anxiety; like many entering middle age, she fears that little failures of information retrieval are signs of early onset Alzheimer’s. Another has to do with the pain caused by her husband’s sudden departure and her learning of his infidelity from friends. She finds that, given all that she has to cope with, she quite easily forgets about Shane, and she is not altogether pleased when he decides to return to the household. Her painful experience of abandonment has made her see some advantage in forgetting—if only she could choose what to forget. Another has to do with establishing family memories, ensuring that they are passed down. One of her strategies for dealing with her father’s memory loss is what she calls “the memory project”; each night she asks him to relate a particular memory to her. She does not pass these along to her readers, but she insists that, whatever his own powers of recall,

88  Memoir and (Lack of) Memory his mere physical presence functions as a memory-stimulant in her; it helps to keep her rooted in an ongoing family narrative (189). One after another, these memories coincide with and evoke her own: “It is as if his life has been boiled down to these few, singular experiences, and they have come to stand for everything in between” (256). The confluence of his memories and hers is an affirmation of a shared history, whatever the future may bring. This may be the basis of Cohen’s claim that “the memory project is what saves me” (192). Cohen astutely identifies one of the reasons dementia is so threatening to family members: being forgotten by a living parent is a different—in some ways more severe—loss than that parent’s death. While still physically present, a demented parent is unable to remember shared history and appreciate filial achievements (194). Family members, especially children, can no longer gain gratification from the demented member’s pride. What compensates for this in Cohen’s case is her sense that she is being prepared for the eventual death of her father; thus, the lot of the caregiver is seen as a rehearsal of the fate of most children, to be predeceased by their parents. In admitting, poignantly, after her husband returns, that “on a certain level I realize I would rather have my father come home,” Cohen articulates a revised understanding of family: It feels like an unhealthy thing, to prefer your father to your husband. But it is true. The meaning of family for me has shifted entirely. Now I think of family as the people who stick by you, the ones who are there when you go through things. (250) This is meant mostly to contrast her disloyal husband to her father, but its application to her father is consciously ironic: he has stuck by her in large part as a function of his dysfunction. In a sense, of course, both Shane and Sanford have abandoned her, but only her husband does it deliberately, and the narrative is devoted to ways in which she feels she can slow down, or learn from, the inexorable eventual departure of her father. Again, the odd ménage gives her a rare but redemptive perspective on the losses of Alzheimer’s. My last example of this class of texts is the most impressive overall: Sue Miller’s The Story of My Father: A Memoir. Like Jonathan Franzen, Miller is a novelist, and her book benefits from her skill with narrative. But it is not particularly novelistic in technique; it trades more in summary than in scene, and it contains very little direct dialogue. Indeed, it is relatively conventional in form; it proceeds more or less chronologically from the first signs of her father’s dementia, not long after his wife’s sudden death (her father gets lost while driving a familiar route), through his diagnosis to his eventual institutionalization and death. But more than any of the narratives discussed above, this one includes sufficient

Memoir and (Lack of) Memory  89 interpolations of back story to warrant its title: it is not merely the story of her father’s dementia; it is the story of his life. Like Cohen, Miller is the daughter of a professor, and the loss of paternal mental prowess is a major issue; however, her father’s discipline, religious history, gives an interesting twist to the topos of loss of self. As I’ve suggested earlier, the literary memoirs do not simply track the inexorable degeneration of the parent; as Shenk implies all caregivers and families of those with dementia must, they seek not merely “closure” but also meaning. Like Franzen, Miller seeks and detects some continuity between her healthy and her diseased father; in that, perhaps paradoxically, she finds something redemptive. This pursuit of continuity follows a couple of threads. One is her meditation on the topos of absence. As I’ve suggested earlier, most, if not all, filial memoir is stimulated by a sense of the father’s absence; often, writing the memoir constitutes a posthumous attempt to redress that absence, to fill in a large hole in the writer’s universe. Missing the living father, the memoirist attempts to conjure his ghost. Miller’s approach is particularly complex here. She notes that, when her father was at home, he was a more stable and reassuring parental presence than her rather high-strung mother. Yet a formative experience was her father’s absence from the household in her early childhood while he did research in church history in Germany, leaving her mother alone with three young children for six months. As an adult, Miller understands how hard this must have been on her depressive mother; she also notes the effect of this early abandonment on her own relation to her father. Significantly, her earliest memory of him is of his absence: “My memory, then, is not really of him but of the effort of trying to reconstruct him in my mind, of struggling to imagine him, of missing him. My memory is of memory, working to find its object.” She goes on to note that he was, despite his stability, an emotionally distant father all of her life, owing to his temperament and professorial preoccupation. And his later pathological absence hurts in part because it intensifies—and seems to finalize—the sense of distance between them. In a passage that will resonate with most family members of those with Alzheimer’s, she remarks on the effects of his dementia: I felt very distant from him, even angry at him—for his otherness, for what seemed his unconsciousness of the strangeness of what he was going through and what he’d done. I wanted him restored to himself. I wanted my father back. This old geezer made me mad. (15) Yet rather than attempting to close the gap between them, Miller comes to accept it and let that be part of the meaning of his Alzheimer’s. In a wonderful afterword—a kind of meta-memoir—she reflects on the

90  Memoir and (Lack of) Memory process of writing her book. Here she explains how her new understanding (achieved in part by writing the memoir) of his characteristic and perennial absence from her life in some ways diminishes the pain of the new kind of absence attendant on his Alzheimer’s: [I concluded] that his Alzheimer’s disease in a sense merely exacerbated a lifelong feeling of loss I had about my father. My father was not his own. Therefore he couldn’t be anyone else’s—and he wasn’t. He couldn’t be my mother’s, he couldn’t be mine or my siblings’ . . . An abstract father. A father who might forget you if what he was thinking about at the moment was more compelling to him. This, I had thought, must be what gave Alzheimer’s disease its peculiar emotional potency for me, even beyond the tremendous power it exerts in every family’s life where someone suffers from it. It took my father away, yes. But it reminded me that my father had long since been taken. He’d been gone, claimed elsewhere—by his beliefs, by his convictions, by the way they dovetailed with whom he’d become, growing up with the peculiarly Victorian and religious upbringing he’d had. (165) Miller comes to believe that her father suffered less than others from Alzheimer’s because of the kind of man he was. Never having been his own, but always in some sense God’s, he did not suffer the loss she did when he developed Alzheimer’s; he was more easily resigned to, and even became intellectually interested in, his own deterioration. With little ego to begin with, he had less ego to lose. In saying this, she is not attempting to beatify him; by her account, he wasn’t so much self-effacing (because that implies will and effort) as just lacking in self to efface (169). As compensation for his daughter’s suffering, this may seem meager stuff. But by her own account, it brings her some degree of comfort. What distinguishes Miller’s memoir most is its astute insights into how the process of dementia alters not only her father but also her; in this regard, it is a particularly relational and self-reflexive memoir. Like many dementia narratives, this one contains scenes involving the most disconcerting symptom of the condition, lack of or mis- recognition of family members: more than once her father tells her of his wish to get in touch with “Sue.” Her first response is indignant: she is Sue! But she comes to realize that, from his point of view, perhaps she is not any longer the Sue with whom he had been familiar: It seemed to me, thinking about it afterward, that what had happened was that his memory of me and the person he saw and recognized as me when I visited him had somehow sheared off from each other. . . . Oddly, sadly, I also felt he was getting at something else, a deeper reality,

Memoir and (Lack of) Memory  91 in his confusion. For in my treatment of him, I had become another Sue—a caretaker Sue. A cheerful, dismissive Sue. A Sue who, from his perspective, was grossly insensitive to the shocking and astonishing and sometimes painful things that went on daily in his universe. If he was altered, I thought, so was I—and strangely, in some of the very same ways he was: made bland and callous, reduced by Alzheimer’s disease. (137) This is a shrewd perception and a brave admission. It is conventional in filial memoirs of dementia for the narrator to lament and mourn the loss of the parent; Miller’s distinction lies in her empathetic identification with the parent. As he seems lost to her, she understands that she may seem lost to him. Her gesture reveals the extent to which many such narratives, ostensibly focused on the parent, are largely a function of the emotional needs of the adult child. The reversal of perspective achieved by her consideration of how she, and his perception of her, may have been changed by the new dynamics of their relation is all the more impressive for its rarity in Alzheimer’s narratives. Like many caregivers, Miller learns to accede to hallucination (when it is benign) rather than to deny it; in the face of an often hostile staff, she makes a conscious decision to let her father occupy a kind of parallel universe (123). But more than any other dementia memoirist—perhaps uniquely—rather than merely lamenting the absence of the other and seeking comfort in restoring that other in memory and preserving him in print, Miller recognizes, understands, and embraces the concomitant altering of her own ego: He changed, and changed again. And in response, often lagging a step or two behind him, I changed also. Slowly, reluctantly, I learned new ways to behave, and I too was transformed, at least with him as his illness deepened. (119) To admit that a loved one’s disability or diminishment reshapes oneself is a rare but salutary insight, and insofar as it shapes the narrative, rather than merely being stated in it, it gives the book real distinction. And it is Miller’s thoughtfulness about the project that may make it the most appealing to those in her position. She notes that for those who witness the degeneration of a loved relative, the project of memoir-writing is partly one of exorcising “the final haunting images” and “reconstructing my father again . . . imagining him whole, putting together the pieces that slowly disintegrated and broke off . . . [to] bring him home in my own memory from the faraway land of his disease” (40–41). More self-aware

92  Memoir and (Lack of) Memory than most narrators, too, she explicitly addresses the problem of performing this reconstruction without gratuitous invention and without misrepresenting her own fallible memory. But in the end, she comes to an almost contrary realization—that the work accomplished in the long and fitful process of memoir-writing is not the re-calling of her father, the recreation of the man before the disease: her father, she came to realize, “didn’t need me to rescue him, to make sense of his life” by writing it as a coherent narrative (170). Rather, while she never renounces her desire to produce a narrative useful to others in a similar situation, she accepts, in the end, that her work is primarily concerned with her own comfort, which is found in the messy, simultaneously painful and pleasurable process of writing, rather than the literary product: “it is by the making of the story, and by everything that changed in my understanding of him and of myself as I made it, that I have been, as the writer that I am, also consoled” (171). Miller’s conclusion brings to mind Shenk’s assertion—cited at the outset—that the task of the caregiver is not to battle Alzheimer’s but “to make a certain peace with it, to struggle to understand the loss, come to terms with it, create meaning out of it” (32). This endeavor need not take narrative form, of course. But when it does, the narrative may bid to reconstitute in words the personality distorted, obscured, or effaced by Alzheimer’s. Alzheimer’s narratives are life writing in a particularly literal and urgent sense, as they seek to perpetuate personality threatened with erasure even before death. One motive fundamental to such narratives is to create a sort of surrogate parent to replace the one disappeared by dementia; thus, the most compelling narratives are those that succeed in conveying precisely who is being lost. At the same time, as Miller sees, narrative cannot repair Alzheimer’s damage or replace the missing parent. What it can do is faithfully register the losses suffered both by the afflicted and their survivors; the aim (and potential gift) of such narrative is recognition of the other, in a number of senses: acknowledgment and acceptance, certainly, but also knowing again and anew under great duress.

Works Cited Bayley, John. “Elegy for Iris.” New Yorker, 27 July 1998. https://www.newyorker. com/magazine/1998/07/27/elegy-for-iris (web June 11 2020). Cohen, Elizabeth. The House on Beartown Road: A Memoir of Learning and Forgetting. New York: Random House, 2003. Print. DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer’s. New York: Free Press, 2003. Print. DeBaggio, Thomas. When It Gets Dark. New York: Free Press, 2007. Print. Franzen, Jonathan. “My Father’s Brain: What Alzheimer’s Takes Away.” New Yorker, 10 September 2001. https://www.newyorker.com/magazine/2001/09/10/my-fathers-brain? (Web June 11 2020).

Memoir and (Lack of) Memory  93 Grady, Denise. “Zen and the Art of Coping with Alzheimer’s.” New York Times on the Web, 14 August 2007. http://www.nytimes.com/2007/08/14/health/14seco. html (Web July 21 2008). Iris. Dir. Richard Eyre. BBC Films, 2002. Kantrowitz, Barbara, and Karen Springen. “Confronting Alzheimer’s.” Newsweek on the Web, 18 June 2007. http://www.newsweek.com/id/34002 (Web July 21 2008). McGowin, Diana Friel. Living in the Labyrinth: A Journey through Alzheimer’s. New York: Delacorte, 1993. Print. Miler, Sue. The Story of My Father: A Memoir. New York: Knopf, 2003. Print. Neergard, Laura. “Training Helps Alzheimer’s Caregivers.” Washington Post on the Web, 13 August 2007. http://www.washingtonpost.com/wpdyn/content/ article/2007/08/13/AR/2007081300352.html (Web July 23 2008). Shenk, David. The Forgetting: Alzheimer’s Portrait of an Epidemic. New York: Doubleday, 2001. Print.

7 Paper Orphans Writers’ Children Write Their Lives*

For most of my life, I have felt precisely as I did at my father’s openings: invisible until recognized as his daughter, cloaked—no, masked—in that comfortable, curiously eclipsing sense of self which is not me at all. Again and again, it seems, I have to remake the same discovery—that reflected glory yields little warmth. Musa Mayer (210) In the last decade, for reasons as much personal as academic, I have been intensely interested in memoirs of fathers, which I have dubbed “patriography”—as distinct from “matriography,” memoirs of mothers. As it happens, a substantial number of such texts have been published over the last two decades in North America. When I initially turned my attention to this phenomenon, I quite quickly amassed a bibliography of about 100 published book-length narratives. Thus, it seems fair to claim that this no mere fad but a cultural trend of some significance. In North America this development is in part a function of the demography of the “baby boom” generation (those born from 1946 to 1964). This large and influential cohort is just turning 65, the conventional age of “seniority” and retirement in the U.S. As their parents become ill or disabled, and die, baby boomers confront their own mortality and ponder their parents’ lives; in turn, some are moved to write those lives. When it comes to writing parental memoir, however, the preferred subject is usually, if unfairly, the absent or distant parent. As a result, far more of these narratives concern fathers than mothers. This reflects the emotional dynamics of the post-war middle-class nuclear family, typified by an absent bread-earning father and an available home-making mother. Furthermore, most memoirs of fathers have been written by sons. A significant exception is a niche genre, narratives of fathers afflicted with dementia, which are generally written by daughters who have served as care-givers (Couser, “Memory”). This genre, then, is rooted in patriarchy and patrilinearity. * First published in Life Writing 9.1 (2012): 259–267. Special Issue on Patriography, edited by Stephen Mansfield. September 2013. Reprinted here by permission of Taylor & Francis.

Paper Orphans  95 Such memoirs are, obviously, a subset of “relational life writing.” Within such narratives, the focus may shift from father to child, but the deep subject, if not the explicit topic, is the relationship between them. My initial perusal of the literature suggested (not surprisingly, perhaps) that memoirs of fathers tend to emerge from relationships that were experienced (by the writers) as deficient in some way or other. While these narratives may serve to memorialize their paternal subjects, they seem impelled by the desire to shore up, repair, or compensate for a flawed relationship. That is, the books are best read not as static representations of fathers (i.e., biographies), whether favorable or not, but rather as attempts to claim or even fashion a relationship with a father who is absent—because of death, geographical distance, or emotional reserve. I am not suggesting that the narratives are addressed to those fathers; in most cases, the fathers’ death prevents that. Rather, the narratives are attempts to alter an existing relationship, or even effect a new one, with the author’s father. Two conflicting impulses, affiliation and disaffiliation, may generate these narratives. Of these, the former is more common. Affiliation and disaffiliation are distinct by definition, yet in both cases the author situates him- or herself as embedded in a defining relationship with a father, rather than as an autonomous agent. Paternity is a powerful identity marker and, as such, a strong stimulus of memoir. The first critic to pay sustained attention to memoirs of parents was Nancy K. Miller, with Bequest and Betrayal: Memoirs of a Parent’s Death, in 1996. In Bureau of Missing Persons: Writing the Secret Lives of Fathers, Roger Porter’s emphasis is on paternal secrecy and filial sleuthing, which characterize a significant set of memoirs in which an adult child explores something hidden, withheld, or misrepresented in the father’s life. In such texts, the impulse may be affiliative or not, but the driving force behind the memoir-writing is curiosity about some concealed aspect of the father’s life.1 Although, as we’ll see, there is some overlap between Porter’s focus and mine, my primary concern here is with the relationship of the writer to the father’s body of work in the public realms of thought, literature, and art. One might say that here the issue is over- rather than under-exposure of the parent. Rather than revealing what had been hidden, the narrator attempts to repossess what has been public. It may not be surprising that a significant cluster of patriographies is devoted to famous public figures: celebrity is catnip to publishers. What may be surprising is that so many of these figures are intellectuals: critics or academics (e.g., A. J. Ayer, Anatole Broyard, and Erik Erikson) or artists, architects, and writers (e.g., Kingsley Amis, John Cheever, James Dickey, Philip Guston, Dashiell Hammett, Joseph Heller, Ernest Hemingway, Louis Kahn, Ring Lardner, Jr., Ross Lockridge, Bernard Malamud, William Matthews, J. D. Salinger, Rod Serling, William Styron, and Orson Welles). Some narratives use the perspective of the child to illuminate the life of the father—“my take on my famous father”; others

96  Paper Orphans use the father’s fame as a pretext to recount their own lives—“what it was like to be my famous father’s child.” But the categories overlap, and both trade heavily on paternal fame. What distinguishes them from other patriographies is that the parentchild dynamic pivots around the father’s creative work. This scenario is problematic, for several reasons. For one thing, that work is what removes the father from the house (or, in some cases, sequesters him within it); it thus puts distance, literally as well as figuratively, between them. Indeed, insofar as the father’s intellectual labor produces a species of progeny, it can be perceived by a child as tantamount to betrayal; it may provoke a kind of virtual sibling rivalry. Thus, Alexandra Styron reports that she and her siblings knew that fiction, not his children, “owned [her father’s] heart” (quoted in Schillinger). Furthermore, the work is generally available to a wider public, with whom the child may feel competitive. So the predicament of the child of the intellectual can be fraught in distinctive ways. Narratives by sons of celebrated male writers who are themselves writers often have their own emotional dynamics; not surprisingly, there is often a subtext involving competition and rivalry. Such Oedipal struggle seems to characterize Christopher Dickey’s Summer of Deliverance and Sebastian Matthews’ In My Father’s Footsteps. The son of the poet James Dickey, Christopher Dickey is a journalist by profession and a novelist by avocation; the son of the poet William Matthews, Sebastian Matthews is himself a poet. Neither son has achieved, or is likely to achieve, his father’s degree of celebrity as a creative writer. Thus, patriography becomes an extension of, or supplement to, an existing professional competition. In the cases of both Dickey and Matthews, however, the father’s fame was tainted with excess or transgression such that the son could assume moral high ground, a narrative vantage from which he can condemn or forgive his father; either way, the son can present himself as not merely having outlived but having outgrown an overbearing father. Thus, the struggle does not the take the form of open competition or hostility; rather, the son’s victory is manifest in his coming to the father’s rescue or offering to reconcile with him, enabling him to assume a parental role in patriography. Unable to match the father’s fame and creative productivity, the son can at least pose as having achieved greater maturity than his deflated father figure. In the case of Chris and James Dickey, the titular “summer of deliverance” is not the summer during which the father’s novel Deliverance was adapted into the film starring Burt Reynolds and Ned Beatty, but rather a later summer during which Chris helped to rescue his father from his catastrophic drinking. The filial victory lies in becoming a parent to his father, whose abundant talent is linked with arrested development. In his memoir, Sebastian Matthews admits to following too closely in his father’s footsteps—the mixed legacy of being the son of a celebrated poet and womanizer. While Sebastian was still in high school, William let him choose which of his graduate students would “baby-sit” him in William’s

Paper Orphans  97 absence; predictably—and, Sebastian suspects, with his father’s blessing— Sebastian and his sitter have a brief fling. While this is highly gratifying to the horny teenager, as an adult who suffers bouts of impotence, Sebastian suspects that his initiation into sex was far from healthy. Indeed, he finds himself repeating his father’s pattern of seducing and abandoning women: In fact, I’ve transferred his bad-boy behavior into my own life. Drinking, womanizing, leaving without saying goodbye. I’m sharing the world he invited me into when he helped me select that baby-sitter. But now, instead of Dad introducing me to women, I am searching them out myself. (139) His impotence seems an overdetermined and ironic manifestation of his inability to fully measure up to his father’s manly example. A turning point of sorts comes when a therapist remarks to him, “You are not your father.” What Sebastian first takes as a reminder of his shortcomings he eventually comes to appreciate as a liberating indication of his individuality; he does not need to try to measure up to alien paternal standards. He can only move beyond his impasse, however, after his father dies. At first, his father’s death seems to block him creatively, but eventually he redecorates his study with his father’s old desk, and by writing about his father’s death, he manages at once to resume writing and to lay his father’s ghost: It was all strangely cathartic, as if writing about the facts of his death helped me recover from it. Over time, a portrait of my father—of my relationship to him—rose to the surface, a negative in its pan of developer. . . . (265) Inheriting his father’s chair, the son is able to take his place in it literally as well as figuratively; ironically, the son manages finally to get past his over-identification with his father by literally occupying his seat and there summoning up his father in prose: in effect, engendering him. Only by patronizing the father does the son come into his own as a man. And writing a filial memoir is apparently an integral part of this process; in the cases of Dickey and Matthews, the writing of filial memoir enables the son to re-affiliate himself with his father from a position of power and vitality—on his own terms, in his own write (sic). Children of famous writers can rarely outwrite them. A less competitive way to reckon with the literary father is to assert a public claim on his work. In the case of the minor or forgotten figure, one can become his champion, reversing the father-child dynamic by promoting his oeuvre. An example of this is the case of Larry Lockridge, the son of Ross

98  Paper Orphans Lockridge, Jr. Now obscure, Lockridge père was famous in his day as the author of the novel Raintree County (1948), which became a Book of the Month Club Selection and was later adapted as a movie starring Montgomery Clift, Elizabeth Taylor, and Eva Marie Saint (1957). Larry Lockridge had little direct experience of his father, who committed suicide in 1948, when Larry was only five. As an adult, Larry Lockridge was in no position to write a memoir of his father: he had only a few vague memories of him. But as a professor of English, he was in a position to write a literary biography that would supplement and, ideally, supersede an earlier one. Thus, in Shade of the Raintree, Larry Lockridge attempts to rehabilitate his father’s literary reputation, presenting him as a case study of an American writer who sought fame and was destroyed by it. (Ross Lockridge’s suicide came as he was in the process of revising his novel for the Book of the Month Club and trying to sell it to a movie studio.) In a sense, then, rather than elevating himself to the status of the father’s virtual child, his novel, the son legitimates his father’s intellectual offspring; he deploys his authority as a literature professor to bestow honor on literary creations that some had deemed bastardized by commercial motives. In resurrecting his father and attempting to convey a degree of immortality on him, he also of course conveys a degree of reflected fame and literary prestige on himself. Obviously, this is a highly affiliative memoir. But what distinguishes it is its focus on his literary patrimony. The son makes his claim on (and for) his father’s legacy by using his own professional talents; he bonds with his father as a man of letters. The case of Josephine Hammett (Marshall), daughter of Dashiell Hammett by a woman to whom he was married only briefly, evinces a similar impulse to connect with an absent father through a posthumous claim on his work. Jo was largely deprived of her father’s company as a young girl: Dashiell lived apart from Jo, her siblings, and her mother at first in part because he had tuberculosis; after he fell in love with Lillian Hellman, he spent the rest of his life with her. Although Hellman realized that it would be counterproductive to discourage or interfere with Dashiell’s relationship with his children, after he died she tightly controlled his estate, his legacy, and his public image; thus, Jo Hammett felt inhibited from writing about her father as long as Hellman lived. After she died, however, Jo felt empowered to publicize her relationship—and by implication her mother’s—to Dashiell. At that time, Jo was permitted by Hellman’s executor to co-edit a volume of his letters; writing the introduction to that volume led her to produce a full-length memoir: Dashiell Hammett: A Daughter Remembers. Like Lockridge, Jo Hammett wrote very belatedly; and like his, her narrative serves not only to compensate for a lack of paternal company but to compete with incomplete biography—inserting herself into his life narrative. For both,

Paper Orphans  99 a prime motive was the desire to claim their fathers as their fathers; in Hammett’s case, this involved demonstrating, after Hellman was gone, that she, Jo, was intimately related to him before Hellman came along. Patriography is used, then, to trump the marital bond. Children of celebrities always have to reckon with their parents’ fame and compete with their fans. But, because intellectuals may become public figures without leading public lives, their sons and daughters have more freedom to define their subjects than the children of other celebrities; their memoirs do not need to compete with pre-existing representations to the same degree as memoirs by children of fathers who lived their lives in the public eye. But their fathers’ fame may be problematic as a basis for memoir precisely because it accrues from private rather than public action; the core activity of the creative life, even if its products are available to visual inspection, may defy representation, or at least narration, in biography. The memoir of the creative father may thus foreground a key issue in patriography in general—the accessibility of the father. Ironically, the fact that the creator-father may work at home may exacerbate the issue of his availability: children conditioned not to violate the sacrosanct home study or studio may feel the father’s inaccessibility more acutely than children whose fathers leave home to go to work and who may appear in public media like television. Furthermore, writing the story of the creative life usually entails a degree of public exposure that the father may not have desired and may resent and resist. This is most obvious in the case of J. D. Salinger, who managed nearly to squelch (and greatly to alter) a biography by Ian Hamilton—by denying him the right to quote personal correspondence— but could not prevent his daughter from publishing her memoir, which is ipso facto in part a memoir of him. Thus, although these fathers are public figures, their memoirs raise questions as to the seemliness of breaching their privacy. It is one thing for a professional biographer to do this; it’s another for a son or daughter. The children of creative intellectuals may feel a particularly strong urge to “claim their paternity”—that is, to assert a public claim on their fathers as their fathers. Especially in the case of architects and writers, their fathers’ oeuvre is in some sense public property; the work of the former is often literally open to the public, and the published work of the latter is available to all readers. (The status of visual art, such as paintings, is more complicated; the more successful the artist, the less likely that his children will be able to control or possess the art in question, and the greater the likelihood that it will end up in museums in public view or in private collections not accessible to them.) Thus, the child of the celebrity artist may suffer a sense of exclusion not only from the site of creation but from the work created there. The memoir of a paper orphan often seeks to re-claim the father from the public, to privatize him, by restoring him to the family unit. Ironically, however, this can only

100  Paper Orphans be accomplished by publication, which threatens to further dilute the author’s sense of ownership by rendering the private life public. Thus far, my examples have concerned patriography by “legitimate” children—those born in wedlock and acknowledged by both parents. For obvious reasons, illegitimacy may serve as an added stimulant to patriography; in such cases the child may claim paternity over against the father’s tacit or outright denial of it. A visual example of this scenario is found in My Architect, a documentary film whose director, Nathaniel Kahn, asserts his filial claim on the architect, Louis Kahn, who was his biological father but who never married his mother (he was married to another woman) and who spent little time with his son. Kahn fils takes advantage of his visual medium to possess his father’s buildings as in some sense his own, inserting himself into them in a distinctive and memorable way. For example, he films himself skateboarding solo around a plaza at his father’s Salk Institute in La Jolla California (see Porter, 133). A variant of this fraught scenario is found in One of the Family (1992), a memoir by the illegitimate daughter (Wendy Fairey) of a famous intellectual (A. J. Ayer). Fairey’s initial claim to fame was being the daughter of Sheilah Graham, a Hollywood gossip columnist famous in her own right but better known as the companion of F. Scott Fitzgerald at the time of his early death. Like Fitzgerald’s Gatsby, Sheilah Graham had reinvented herself: born to Jewish parents and raised in an orphanage in London’s East End, she occluded or disguised her modest, ethnic origins in her autobiography, Beloved Infidel (1958, written with Gerold Frank), only to be outed by one of her brothers after its publication. By itself this might have made her, in Porter’s term, a “missing person,” one who had intentionally obscured her heritage. But Graham’s account of the paternity of her daughter proved equally misleading. Fairey grew up thinking that she had been fathered by Trevor Westbrook, to whom her mother was married when she was born. Only when Fairey was 46 (and her mother was dead) was she told that her biological father might have been the British philosopher, A. J. Ayer, with whom her mother had had a brief affair. (She was told this by Dee Wells, a friend of her mother whom Ayer subsequently married.) In a day before DNA paternity testing, Fairey scanned Ayer’s autobiography for photographic evidence of family resemblance and thought she found it; when she confronted him, he acknowledged his paternity. Fairey readily admits that it was enormously gratifying to learn that her father was not her mother’s husband (who had never acted particularly paternal) but rather a handsome, brilliant English academic. Trevor was ten years dead and Freddie was alive. Trevor was a man in whose company I had never been at ease; I had always felt the stress of trying to be his daughter. Freddie was the blithe sparkling

Paper Orphans  101 hero of my childhood, who had bought me Tess of the D’Urbervilles, walked with me through the Tate looking at the Turners, introduced me to London buses and to small French restaurants in Mayfair and Soho. As I got into bed late that night, I allowed Dee’s revelation a final moment of unreserved magic. “Freddie Ayer is my father.” The sentence reverberated in my head—a question, an exclamation, and something close to a prayer. (45) As a child, she had entertained the fantasy that Fitzgerald was her real father: “If [Sheilah] was Scott’s [second] wife [as Edmund Wilson had called her], we by extension were his children” (111). The discovery that Ayer was her father was thus a fulfillment of what Freud termed the “family romance”—the idea that one’s true parents are more glamorous and sophisticated than those who share one’s household. As it happened, however, Ayer did not live long enough for father and daughter to establish a meaningful relationship. Moreover, she realizes that, although he had known all along what she had only just discovered, he had never divulged it or sought contact with her; this sense of being shut out of his life was reinforced when she read his two-volume autobiography, which contains no mention of her: I suppose that I was looking not only to understand the life that had occurred so largely apart from me but also for hints of my existence. There were none to be found, though their absence gave a peculiar resonance to Freddie’s life when, had he chosen to include me, I would most likely have been mentioned. (189) She realizes, too, that her mother was complicit in that exclusion, perhaps fearing (plausibly) that her academic daughter might favor her intellectual father. Fairey craved intimacy with Ayer, but could approach it only vicariously, by reading his autobiography (which, from her perspective, significantly misrepresents his life). Her memoir is, not least then, her means of inserting herself into his story: in part by writing it, she becomes publicly one of his family and he one of hers. In the end, after his death, she realizes what a fantasy she had lived since learning of his paternity. I think I knew Freddie; I think I loved him. I know I am his daughter and thus know better who I am. Yet he too, in the last analysis, was a father manqué, joining with the famous dead writer and the respected English engineer as figures who hovered on the edge of my life, shadowy fathers, fathers of air, fathers who evaporated, more symbol than substance. It is an irony that the only person who ever

102  Paper Orphans really sought to be my father, the only person who ever truly played the role, was my mother, Sheilah Graham. (269) Fairey’s patriography is quite unusual in reaching this conclusion; her quest brings her back to her starting point: her real father was her mother all along. Thus Fairey’s memoir, like Mayer’s, is notable for the way that it complicates and ironizes the ground it stands on: the sense in which both women are the offspring of the fathers whose fame justifies their narratives. Both memoirs have to do with paternity not only as biological fact but as social experience.2 Among the seventeen cases of “paper orphans” I listed toward the beginning of this article, women outnumber men almost two to one (11 to 6, see Works Cited). I make no claim that the imbalance in this somewhat arbitrary sample typifies this genre as a whole. However, there seem to be gender differences between the stances of daughter and sons toward creative fathers. For example, even when the daughter, like Susan Cheever, is herself a professional writer, the relationship is less overtly competitive than it is with a son. Thus Home Before Dark: A Biographical Memoir of John Cheever by his Daughter stands in stark contrast to those filial narratives by male writers who are the offspring of famous writers; according to her testimony the relationship between this writer father and his writer daughter was not particularly competitive. Indeed, her memoir is rather exceptional among memoirs by those I am referring to as paper orphans. One of John Cheever’s eccentricities was that he did not require a private retreat in which to create (100–01). In more than one family house, he would use whatever room, or even part of a room, could be commandeered; he did not seem to resent being observed or interrupted while he worked. And he and Susan seemed to have managed to coexist as writers without much jealousy or competition. (This may be easier with a daughter than with a son, and it was achieved in part by benign neglect of each other’s work.) While he was alive, their personal relationship was often combative, but as a memoirist she writes with great equanimity about his extra-marital affairs (including homosexual ones), his depression, and his nearly suicidal alcoholism. Nevertheless, her memoir (which is not as biographical as its subtitle suggests) exposes the peculiar dynamics that may obtain when the offspring of a famous writer is a writer him- or herself. The obvious desire of the second-generation writer is to be recognized on his or her own. At the same time, there may be a strong temptation to take on the father as a subject and thus capitalize on the intimate relationship with the famous man. Writing the memoir of the writing father threatens to undermine one’s separate stature as a writer; indeed, it risks invidious comparisons by reviewers. Susan Cheever resolves this conflict, and justifies her book, by claiming that it wrote itself, or that she wrote it

Paper Orphans  103 in spite of myself. I had always been proud of my independence from my father, and I never intended to become his biographer. Nevertheless, I found my memories and his stories taking a rough narrative shape, and that was how I began to write this book. (x) Like a novel, then, the book took on a life of its own. But it’s also, undeniably, not a novel but a memoir; as such, it is more dependent on his testimony (and his journals, which he shared with her) than on biographical research. If anything, she tends to soft-pedal the pathographical—his drinking and his extramarital sex. Susan Cheever does not exploit these aspects of his life, nor does she unearth any new skeletons. Indeed, in one episode she presents herself as fending off what sounds like a blackmail threat from a drunken writer who possesses letters from her father that say “awful things, about his brother, and about Mary [his wife]” (44). Rather than offering the reading public an intimate exposé, she claims that she wrote his life merely, or mostly, as a way of extending it: “I wanted to keep my father alive” (x). And ultimately, she insists, writing the memoir became a way of knowing him: I wanted to tell a writer’s story. But each memory had layers of reality and fantasy, and unraveling them became a way of discovering who my father really was. I don’t think I would have started this book if I had known where it was going to end, but having written it I know my father better than I ever did while he was alive. (x) In the end, then, her book characterizes the filial memoir as less a document that aims to publicize the private than one that serves to extend and deepen an already existing relationship (beyond its seeming terminus). Daughters who are not themselves intellectuals may find themselves struggling with traditional gender patterns and negotiating a new relationship in writing patriography. One of the most self-aware and thoughtful accounts of what it’s like to be a paper (or, in her case, canvas) orphan is Musa Mayer’s Night Studio: A Memoir of Philip Guston. Mayer’s memoir is particularly interesting for its gender bind: Mayer is aware that it may seem retrograde for a self-proclaimed feminist to devote a book to memorializing her patriarchal father. Of relevance here is that her book is dedicated to her mother,3 Musa McKim, an artist who sacrificed her career to raise her daughter and be “the consummate artist’s wife—gracious and uncomplaining, amazingly tolerant of her husband’s unpredictable working habits, his neglect, his black moods, but at the same time an aesthetic companion who understood in the most intimate way what he was striving for” (113). (Guston repaid her by leaving her, for a time, for a young photographer, adding insult to injury by insisting that his wife give her blessing to the affair.)

104  Paper Orphans Although her mother took up poetry after giving up painting, Musa became her mother’s primary creative project. Mayer notes that, although she didn’t make the connection at the time, in early adulthood she repeated this pattern, marrying an artist and giving up her own art to raise their children. (It didn’t help that her father had been a devastating critic of her incipient attempts at art [76–77].) And Mayer is keenly aware of the irony of her devotion to her father: Like any child in my predicament, I became attached to the depriving parent. Sadly, in the economy of my emotions, my mother didn’t count—or didn’t seem to at the time. But it was clearly my mother who was with me during all the years of my childhood. She was so immediate a loving presence from the beginning that she became largely invisible. In the act of embracing, the loved one disappears; such devotion seems almost to preclude knowing. My mother’s keen sense of her own relative unimportance was also incorporated by me, swallowed without question as an article of faith—as the obverse, perhaps, of my father’s genius. I didn’t have to long for her; she was there. Available as my father was never to be. (35–36) Her book is valuable in part because she sees so clearly, and states so explicitly, the nature of her dilemma. On the one hand, she is aware how much, and for how long, she benefitted from a kind of reflected fame: “that simple—by now habitual—transfer of worth from father to daughter, that seductive fool’s gold of borrowed importance I’ve known and traded on all my life” (7). On the other, she is excruciatingly aware of the fact that, as a public figure, her father is better known by many who are strangers to her: So many people—biographers, art critics and historians, even librarians preparing chronologies for catalogues—know more than I do about my father’s life. I should be grateful that so much has been preserved and recorded, and I suppose I am; yet I am jealous, too. These writers have asked him so many things, personal questions I hadn’t thought of or wouldn’t have dared to ask. The notion that I could have interrupted his complicated thoughts simply to satisfy my curiosity was inconceivable. So I am forced to look elsewhere, aware that there is something more than a little pathetic about my turning to these secondary sources—like some doctoral student researching her dissertation—

Paper Orphans  105 to learn about my own father’s life. Nevertheless, it is what I have to work with. Perhaps then, through reading all this, I will know him at last. (9) Only when, after his death, she saw a documentary film that shows Guston painting did she realize that, for all her familiarity with his studio, she had never actually observed him in the creative act. Predictably, she resents having access to this private act only through a public medium, but she cannot refuse it.4 In some ways, she feels these outsiders have had a privileged relationship to him—a byproduct of their expertise in art—so that, ironically, her relationship to him needs to be mediated through theirs. A turning point of sorts came when her father became ill enough to foresee and plan for his own death. With his wife incapacitated by a stroke, he confided in his daughter and transferred much responsibility to her at last. Knowing how little I understood of Philip’s life in the art world, and sensing, perhaps, the role that I might be called upon to play when he died, my father educated me that day in the Coronary Care Unit, making me privy for the first and only time to his intentions. This conversation was something I have been grateful for many times since, in moments of doubt. In a weak voice, pausing frequently for breath, he made sure I knew about the people he trusted, about their loyalty to him. (192) At that time, he also executed a painting of her. Although she describes it as “affectionate,” she acknowledges that it is “far from flattering,” “clearly more caricature than portrait” (198): Only recently have I understood that what disturbs me about this painting is its precise, ruthless statement of the relationship between the painter and his subject. It is a companion piece to one of the same size he called Nurse . . . With her, I was cast in the role of caretaker. That was who I was, to him. No more, no less. And I knew it then; wasn’t that why I had come to Woodstock, after all—to take care of him? But still, it hurts to know that he saw it too, so clearly. It cruelly punctures my fantasy. Deflated, I can no longer entertain the hope that somehow, through taking care of my father, I had come to mean more to him, not as his nurse, but as his daughter. (198) This passage reveals that, in addition to occupying time that he might have spent with her, her father’s art functioned to distance him from her even when they were together and she was its subject.

106  Paper Orphans Still, following his death, she seems finally to resolve her relationship to him and to his art in a complex and ironic way. The late acclaim for his work (and of course the fact of his death) increased the value of his art to the extent that Mayer, as his heir, did not need to work to support herself. With her options open, at the suggestion of his dealer she undertook a complete catalogue raisonné of Guston’s oeuvre. Mayer seems to have resolved her sense of having been abandoned by her father—displaced by his creative offspring—by becoming, after his death, the cataloguer of his work. This uniquely privileged, but posthumous, relationship to his work seems to have substituted for a special relationship to its creator while he was alive. As an ongoing archival project, the catalogue raisonné has given me a medium through which, it seems, I can continue to distill indefinitely the nature of my connection with my father and his work. . . . At the time the work seemed—as it still does—a useful emotional bridge, a way of both having my father and letting him go. . . . And strangely—or perhaps it is not so strange—I feel more legitimate, more secure in my role as archivist and caretaker of my father’s paintings than I ever did as his daughter. (232) But ultimately more important than the cataloguing was writing the memoir; for it was during that process, and because of it, that she became fully aware of the complexity and contradictions of her paternal legacy, and it was only then that she could address them directly. She remains mightily conflicted about her relationship to him—and to his myth. Her feminism makes her aware that she is probably playing into the romantic myth of the artist who channels transpersonal energies. And yet at some level, she believes in that myth; and she concludes her memoir with the notion that, although perhaps the children of great creators do have special relationships to them, in the end they can’t, or shouldn’t, claim them exclusively: What [artists] give is given to the whole world, not only to their families. Though we may love them, we can never really claim them. They are not ours to claim. . . . For me and those who know Philip Guston, two things remain—his art and the memory of his passion for it, a commitment as absolute as he, given his quite human failings, could make it. Now that he is really gone, and not in hiding, pursuing his “sacred foolishness,” now that it is no longer his hunger for painting that keeps me from him, but death itself, now that I can at last give up trying to get his attention, I find myself welcoming that passion at last, for what it has left of him for me, for the world. (246–247)

Paper Orphans  107 It’s a touching, painful conclusion, and yet of course it is reached through the process, and expressed in the product, of a daughter’s claim on a father: her patriography. Erik Erikson’s daughter, Sue Erikson Bloland, similarly felt overshadowed by her celebrity father and came to terms with him by engaging with his work. Her older brother Kai became quite a well-known intellectual in his own right as a professor of sociology at Yale University. But as suggested by the title of her memoir, In the Shadow of Fame: A Memoir by the Daughter of Erik H. Erikson, Sue felt burdened by their father’s fame. Thus her memoir is not so much an intimate biography of her father as a memoir of growing up as the offspring of a famous father. As with Porter’s examples, Bloland reveals some unpleasant truths about her famous parent, including one significant secret: that she had a younger sibling with Down syndrome who was institutionalized immediately after he was born. At the time, the other Erikson children were told that Neil had died at birth; a few years later the oldest sibling, Kai, was told the truth; Sue found out about her baby brother only decades later. Although it was not unusual at the time to institutionalize children with Down syndrome, and the Eriksons could truthfully claim that they had followed expert advice, there are two troubling aspects of this instance. The first is that it was done without the consent of the mother; the second is the sheer denial of the child’s very existence—as though it was inconsistent with the public image of the famous psychotherapist. Although this scenario pretty much precluded patriography from one source (Neil), it eventually served to provoke it from another (Sue). In therapy, Bloland reflected on the family legacy of secrecy and denial: The importance of secrecy and of maintaining a public image had been so paramount in my family life that talking openly (and to someone in my father’s own profession!) about my experience of my parents felt deeply disloyal. Unconsciously, and to some extent consciously as well, I feared that I had the power to destroy them and that my revelations about them to an outsider were a callous form of murder. I’m sure this fear lay behind many lapses in memory on my part . . . Ultimately, it may have been a relief and a disappointment to discover that my words were not nearly as powerful as I had imagined. (126–127) But like Musa Mayer, she eventually came to a new relationship with her father through her profession; in Bloland’s case, it was a consequence of her becoming a psychotherapist in her own right. Fortunately, her father welcomed and supported this decision; in addition, it gave her a new

108  Paper Orphans relation to him—through his thought and theory. It is as if only when she was put in direct contact, as a peer or colleague, with the basis of his fame that she could put his fame in perspective; only, ironically, by following in his footsteps could she step out of his shadow. The writing of the memoir is not just the record of but a stage in that ongoing existential process. My final example illustrates a different aspect of the predicament of the child of the creative intellectual, foreshadowed in the discussion of Night Studio: the possibility that the child will feel that she has been objectified, exploited as “material,” in her father’s work. In this case, the patriography may manifest a disaffiliative impulse as the child “writes back” against perceived parental abuse. One irony of this is that responding to one’s exploitation entails pointing out what may not have been evident to the general reader; this risks compounding the hurt. As a therapist and writer of non-fiction, Janna Malamud Smith certainly did not feel the same sense of competition with her father as the sons who have followed more closely in their father’s footsteps. And despite the objectifying title of her memoir of her father, the novelist Bernard Malamud—My Father Is a Book—she does not seem to have suffered as much of a sense of being orphaned by her father’s work as most of the other children discussed in this chapter. As a child, she did not feel excluded from her father’s study; on the contrary, she felt welcomed, at least on a limited basis: I figured I had one free billet d’interruption any morning I was at home, though I did not daily use it. If I did knock, he would almost always look up from his page, smile, welcome me, ask about my day, and wait to hear what I wanted from him or had to say. A second interruption required good cause, and, of course, his receptivity depended on his mood and how deeply he was into his work. When I wanted his companionship, I was adept at finding ways to visit with him without raising his ire. (257) So although she knew she had to be careful not to wear out her welcome, her father’s study was hardly off limits to her. Indeed, she and her father shared some of their best moments there: I found him then, at his quiet best. They were moments of deep compatibility; easy, comfortable closeness; conversations with a friend. His study is still where I cherish him most; where he is exactly my loving, beloved father. To this day, I find it difficult to return there in my thoughts without entering thick emotion, an incommunicable mix of sadness and sustenance. (259)

Paper Orphans  109 This is a distinctly atypical account of the life of the writer’s child. Nevertheless, she does report feeling a sense of alienation from her father as a writer. It comes not from any exclusion from the site of his writing but rather from her experience, as a young woman, of reading the writing done there. Her disquiet as a writer’s daughter, then, comes not in childhood but in young womanhood, when she becomes uncomfortably aware that she had been not only been used as fictional fodder but in an odd way virtually violated. When she was a young woman, her father had become emotionally, and eventually sexually, involved with one of his Bennington students, a woman not much older than Janna herself. It is in her candid but tactful exploration of this aspect of his career that her own misgivings about her relations to him surface. My father’s passion for someone so close to my age enacted a kind of quasi-incestuous symmetry, which raised bad feelings within me—though I’m not sure they surfaced into full consciousness until Dubin’s Lives was published. (208) The closeness in age was compounded by the fact that both her father’s mistress and his daughter became carers, Janna a clinical social worker, Arlene a psychoanalyst. Janna spells out her discomfort most clearly in this passage: “Lately, as I reread it for the first time, I felt again a vague nausea, and the notion of ‘virtual incest’ came to mind” (241). While I don’t deny that it must be unpleasant to sense that one’s father has an undue interest in one’s sexuality, I confess I don’t know quite what to make of the idea of “virtual incest”: that it occurs only on the page, through a fictional surrogate, would seem to make all the difference. Thus, this particular accusation mars an otherwise sensitive portrayal of her relationship with her father. Nevertheless, Malamud’s testimony here speaks to writers’ children who recognize versions of themselves in parental fiction: Reading a parent’s fiction is rarely simply a literary experience; it is, or can be, much more bizarre. The characters often share intimate truths but then go off on their own. That’s the more recognized truth, and the easier one. But the underlying themes possess an uncanny, sometimes creepy familiarity: they are the spooks of the familial unspoken returning to haunt. They know no walls and can invade with ease across years or decades. (241) In some cases, it is not merely the “familial unspoken” that returns: reading a chapter of Joseph Heller’s autobiographical novel Something

110  Paper Orphans Happened, his daughter Erica was shocked and sickened to come across “years of verbatim conversations” attributed to her fictional equivalent (quoted in Schillinger). This acute, if hard-to-pin-down, sense of being used is hardly inconsistent with a sense of exclusion from the scene of writing. If anything, however, it might leave a more lasting hurt insofar as it seems to be a matter partly of feeling consumed or subsumed in the fiction and partly of feeling exposed in it. Malamud eloquently testifies to a sense of being used that borders on being abused. So in her case, the thrust of her memoir is in part to insist on her own separate personhood, apart from her liminal existence as fictive material. In addition to writing her father’s biography (and exposing some family skeletons in the process: his extramarital affairs, his mother’s attempted suicide and later institutionalization), Janna Malamud is asserting her own independence by writing her own life, establishing its extraliterary existence. In effect, she seeks to write herself out of her father’s work, which she feels makes illegitimate use of her. Her mother had to a large extent sacrificed her ego to her father’s, living the life of the writer’s wife: As I understand the template, it describes a woman who sees her husband as an exceptional creative talent, someone who must be protected from the everyday tasks that fall to the rest of us and completely supported in his pursuit of genius. My mother discharged many such duties. (73) Thus, like Musa Mayer, in writing her father’s memoir, Smith needs to guard against taking her mother’s place and reenacting her sacrifice. Realizing that her father had insisted that she favor him (over her mother) and realizing that she had absorbed some of his sexism, Janna Malamud needs to guard against becoming the daughter he wanted her to be: I was acutely aware of the part of my father that longed for such a grown daughter, intelligent, cultivated, who would devote herself to tending him and his achievement. And at moments, I longed to be her, or at least to have her prerogative, to exist unassailably chosen and empowered. I also understood the endpoint of such intense love: some part of me would be forever subsumed. (25) Her father may have been a book, but in writing the book that makes that claim, she becomes in some sense his author. Such motives and ends are of course not limited to memoirs of writing fathers. What distinguishes this genre seems to be that it seems doubly dependent on the father. First, and more obviously, the father’s fame

Paper Orphans  111 supplies the springboard, the economic rationale, for the memoir. But second, and more interestingly, each child seems to need to establish him- or herself by engaging in some way with the father’s creative output. In some cases, like that of Nathanial Kahn, the child needs to insert himself into it, in order to claim it as his legacy; in others, like that of Malamud Smith, the child needs to respond to having been subsumed into the work against her will. Others, like Lockridge and Mayer, seek a proprietary relationship with their father’s work, making a personal claim over work they cannot control. My examples demonstrate that the motives of memoirs by paper orphans can be various and the dynamics of written responses to creative father complex and intriguing. Such narratives are shaped by many factors: the degree of the father’s success and celebrity, the status of the child (legitimate or not), the discipline of the father (critical or creative; if the latter, literature or visual arts), the child’s profession (whether the same as the father’s), the intimacy of the relationship (the nature of the child’s access to the father), and the child’s gender. But beneath these various dynamics lies perhaps the deepest motive of the filial memoir: to achieve a kind of knowledge—and intimacy—through life writing that often eludes children in life itself. For children of public intellectuals, that endeavor often involves negotiating or fashioning a special relationship to the father’s creative work, lest it should eclipse his actual, mortal offspring.

Notes 1 According to Porter, “there are narratives about difficult mothers, but relatively few about maternal secrecy”—partly because mothers have less privacy, partly because children may be more protective of them (3). 2 Ayer’s celebrity has stimulated, and underwritten, as it were, another patriography, this one by Gully Wells, Dee Wells’ daughter and Ayer’s stepdaughter, The House in France. 3 The maternal dedication is itself an interesting feature of the filial memoir of the famous father. Often the implied message is: “To Mother, for putting up with Father,” or “To Mother, without whom Father would not have been Father.” 4 Apparently, Guston experienced the filming as a kind of violation, and he destroyed the painting in question (88).

References Amis, Martin. Experience. New York: Hyperion, 2000. Print. Bloland, Sue Erikson. In the Shadow of Fame: A Memoir by the Daughter of Erik H. Erikson. New York: Viking, 2005. Print. Cheever, Susan. Home Before Dark. Boston: Houghton, 1984. Print. Couser, G. Thomas. “Genre Matters: Form, Force, and Filiation.” Life Writing (Australia) 2(2), 2005: 123–140. Print.

112  Paper Orphans Couser, G. Thomas. “Memoir and (Lack of) Memory: Filial Narratives of Paternal Dementia.” New Essays on Autobiography and the Body. Eds. Chris Stuart and Stephanie Todd. Newcastle: Cambridge Scholars Press, 2009, 223–240. Print. Fairey, Wendy W. One of the Family. New York: W. W. Norton, 1992. Print. Feder, Chris Welles. In My Father’s Shadow: A Daughter Remembers Orson Welles. New York: Algonquin, 2009. Print. Graham, Sheilah, with Gerold Frank. Beloved Infidel: The Education of a Woman. New York: Holt, 1958. Print. Hammett, Jo. Dashiell Hammett: A Daughter Remembers. Ed. Richard Layman, with Julie M. Rivett. New York: Carroll and Graf, 2001. Print. Heller, Erica. Yossarian Slept Here: When Joseph Heller Was Dad, the Apthorp Was Home, and Life Was a Catch-22. New York: Simon and Schuster, 2011. Print. Hemingway, Gregory H. Papa: A Personal Memoir. Boston: Houghton Mifflin, 1976. Print. Kahn, Nathaniel, director. My Architect, 2003. Lardner, Kate. Shut Up, He Explained: The Memoir of a Blacklisted Kid. New York: Ballantine, 2004. Print. Lockridge, Larry. Shade of the Raintree: The Life and Death of Ross Lockridge, Jr. Author of Raintree County. New York: Viking Penguin, 1994. Print. Matthews, Sebastian. In My Father’s Footsteps: A Memoir. New York: Norton, 2004. Print. Mayer, Musa. Night Studio: A Memoir of Philip Guston. New York: Knopf, 1988. Print. Porter, Roger. Bureau of Missing Persons: Writing the Secret Lives of Fathers. Ithaca: Cornell UP, 2011. Print. Salinger, Margaret. Dreamcatcher: A Memoir. New York: Washington Square, 2000. Print. Schillinger, Liesl. “Literary Lions, by Their Cubs.” New York Times, 10 August 2011. E1. Print. Smith, Janna Malamud. My Father Is a Book. Boston: Houghton Mifflin, 2006. Print. Styron, Alexandra. Reading My Father: A Memoir. New York: Scribner, 2011. Print. Wells, Gully. The House in France. New York: Knopf, 2011. Print.

8 Filiation in Barack Obama’s Dreams from My Father*

Barack Obama’s Dreams from My Father was written in the wake of his election in 1990 as the first black president of the Harvard Law Review: the publicity attendant on that event led to his being offered a contract for a book on contemporary race relations, which morphed in draft into a memoir subtitled A Story of Race and Inheritance. Although it was conceived, written, and published (in 1995) before his career in electoral politics got underway, Dreams owes its genesis to Obama’s historic election to one presidency; more than a decade later, it served ipso facto as a campaign autobiography during his historic candidacy for another, far more important presidency: it is thus a kind of proto-Presidential memoir. It interests me primarily, however, as an example of an emerging type of American life writing, which I call patriography: life writing about fathers by their sons or daughters. Like its companion subgenre, matriography, patriography is inherently relational and intersubjective life writing; it grows out of and attempts to represent an intimate human relationship. It is also, of course, intergenerational: it attempts to negotiate or understand a family legacy as passed on from father to son, an act I call filiation.1 Obama’s book takes its title, and its conception, from a father who was unavailable to him by virtue of early abandonment (when the son was only two) and geographical distance. This is an extreme example of a factor that typically stimulates patriography: the absence of the father. An even more extreme scenario shaped the life of his Democratic predecessor; Bill Clinton never met his biological father, who died before Bill was born. Nevertheless—or perhaps therefore—Clinton devoted the entire first chapter of his post-Presidential memoir, My Life, to forging a posthumous relationship with his inaccessible father—out of scraps of others’ memories and testimony. Clinton’s memoir thus illustrates the power of father-hunger, the extent to which children will go to write filial memoir in the absence of any actual memory of the father. * First published in Life Writing (Australia), 2012, 9(3): 259–267. Reprinted here by permission of Taylor & Francis.

114  Filiation in Barack Obama’s Dreams from My Father Unlike Clinton, Obama did meet his father, but he can hardly claim to have known him. (He knew his Indonesian stepfather, Lolo, his mother’s second husband, much better.) As is quite well known, Barack Hussein Obama, Sr., a Kenyan, met and married Ann Dunham, a Caucasian Kansasian, in Honolulu, where both were students at the University of Hawai‘i. The two separated, however, when their son was only two years old. Thereafter, father and son met only once before the senior Obama was killed in a car accident in 1982, when his son was just 21. Because Obama père had been married and had children in Africa before marrying Ann Dunham, and went on to marry again and have more children back in Africa after they divorced, and because Ann Dunham also remarried and had more children, Obama fils eventually became part of an extended tricontinental family—a kind of mini-Rainbow Coalition: multi-racial, multiethnic, and multi-faith. Still, young Obama spent most of his youth in a single-parent household headed by his white mother, with help from her parents, who relocated to Hawai‘i to be with her. So it is all the more significant that Obama names and orients his memoir as he does, as though his father had been a major presence in his life, rather than a conspicuous absence. In his case, the choice has unmistakable racial, as well as gender, implications. Like anyone of such biracial parentage, Obama was destined to be perceived and identified as black, rather than white or racially mixed. In the conception of his memoir, however, Obama did not merely accept but highlighted his identity as an African American, making a virtue of necessity. This was an act of conscious affiliation with an attenuated African heritage. At the same time, not incidentally, it identified Obama fils as African American who is not a descendant of slaves in the U.S. When it came to his campaign for the national Presidency, however, this was less helpful than it might have been: consider the opposition’s attempts to deny his claim to American birth and thus his political legitimacy. In his preface to the 2004 reissue of Dreams, Obama acknowledged the irony of his aligning himself with his father rather than his mother, but not in racial terms. Apologetically and poignantly, in a gesture that is a common feature of patriography, he took the occasion of writing a peritext to honor his mother, who had died of ovarian cancer not long after the book’s initial publication: I think sometimes that had I known she would not survive her illness, I might have written a different book—less a meditation on the absent parent, more a celebration of the one who was the single constant in my life. (xii) But if patriographies have a common sub-text, it is that fathers need not be present to be influential in their children’s lives. Thus, in the introduction

Filiation in Barack Obama’s Dreams from My Father  115 to the original volume, Obama discusses how the book shifted from its initial topic, “the current state of race relations” (xiii), to “a record of a personal, interior journey—a boy’s search for his father, and through that search a workable meaning for his life as a black American” (xvi). Evidently, then, the mixed-race Obama felt that, despite the very slight involvement of his African father in his life, it was that father’s legacy that required expression and examination in a memoir of a “black American.” It is one of the ways in which the biracial Obama identifies with his minority heritage. What ensues, however, is a narrative in which his father is present only quite briefly and sporadically. Only a small fraction of the book’s 400plus pages directly concern him, and only in the last of its three sections, “Kenya,” does he come to the fore in a sustained way. Even then, the vast majority of the pages devoted to him convey second-hand accounts of his life supplied by African relatives after Obama fils has reached adulthood, either when they visit the U.S. or when he visits Kenya. Nevertheless, Obama père is the titular father, and he matters even when he is not literally present on the page. The narrative proper opens in medias res with an abrupt announcement of his father’s death in an automobile accident. The story of the son’s life thus begins with his learning that his father’s life had ended; the knowledge that they would never meet again sets in motion the quest for the missing father. A few pages later, the son acknowledges that his knowledge of his father had been not only largely vicarious but heavily and selectively mediated: At the time of his death, my father remained a myth to me, both more and less than a man. He had left Hawaii back in 1963, when I was only two years old, so that as a child I knew him only through the stories that my mother and grandparents told. They all had their favorites, each one seamless, burnished smooth from repeated use. (5) Obama then assembles these nuggets into a brief narrative of his father’s trajectory from his youth in Africa through his marriage to Ann Dunham in the U.S. and back to Africa in order to put his education to work (9–10). Contrary to my earlier claim that Obama didn’t know his father, especially in childhood, here he claims a kind of knowledge, that provided by oral family tradition. This is a significant gesture, because even as he acknowledges having no personal memory of his father, he insists that he had some acquaintance with him. Granted, his father was more a myth than a man, and granted, the stories were carefully constructed and cherished heirlooms. But it is significant that Obama

116  Filiation in Barack Obama’s Dreams from My Father cites oral tradition here as a medium of access to his father when he was still alive; because oral tradition is so important in African culture, these early stories seem to honor, transmit, and perpetuate his father’s cultural heritage as well as to recount specific episodes in his life. Moreover, they anticipate and prepare for the stories he will later be told by his father’s African relatives. For the Dunham oral narratives are complemented at the end of the narrative by their Obama equivalents; thus, the son’s self-written life is bracketed by oral narratives of the father’s life from two distinct cultural perspectives. At the same time, this section helps establish his desire to get behind the myth to the man, if possible. By Obama’s own account, the Dunham stories about his father were less about the man himself than about the changes that had taken place in the people around him, the halting process by which my grandparents’ racial attitudes had changed. The stories gave voice to a spirit that would grip the nation for that fleeting period between Kennedy’s election and the passage of the Voting Rights Act: the seeming triumph of universalism over parochialism and narrowmindedness, a bright new world where differences of race or culture would instruct and amuse and perhaps even ennoble. (25) They were less about Obama senior as an individual than about Hawai‘i as a kind racial and ethnic melting pot and thus a zone where it seemed possible to escape or transcend insidious racial boundaries and demarcations. Obama junior regards this as a useful fiction. But he also acknowledges that he needed more of, and from, his father’s story than such feel-good morals: There was only one problem: my father was missing. He had left paradise, and nothing that my mother or grandparents told me could obviate that single, unassailable fact. . . . My father became a prop in someone else’s narrative. An attractive prop—the alien figure with the heart of gold, the mysterious stranger who saves the town and wins the girl—but a prop nevertheless. (26) A subsequent passage hints at the meaning of his title (which refers not to dreams of, but from, his father): For an improbably short span it seems that my father fell under the same spell as my mother and her parents; and for the first six years of my life, even as that spell was broken and the worlds that they

Filiation in Barack Obama’s Dreams from My Father  117 thought they’d left behind reclaimed each of them, I occupied the place where their dreams had been. (27) Thus it is not just that Obama fils inherits, and affirms, the dreams of racial harmony and progress that united his parents in Hawai‘i; rather, he is literally the embodiment of the dreams. If they are dreams from his father more than from his mother, it is perhaps because she was present to her son in reality, while his father’s absence created a vacuum that only myths and dreams could fill—perhaps because, identified and identifying as black, young Obama privileged his African father’s contribution to what was, after all, a joint legacy. The fate of Obama fils, then—his patrimony, in a sense—is to try to live his father’s dream of transcending the limits of race. This was also, not incidentally, the dream of another absent mythic father figure, Martin Luther King, Jr. Contrary to the right-wing insinuations that Obama was somehow indoctrinated in Islam while in Indonesia (where he spent two years in a Muslim school, then two in a Catholic one [154]), his account of these years suggests that living there reinforced, rather than diluted, his American heritage. As his mother became disillusioned with authoritarian, corrupt Indonesian culture (and her new husband’s ethical temporizing), she sought to counter that influence on her son with her own secular humanism and liberalism. Significantly, however, she also invoked his biological father’s example in this endeavor: She had only one ally, and that was the distant authority of my father. Increasingly, she would remind me of his story, how he had grown up poor, in a poor country, in a poor continent; how his life had been hard, as hard as anything that Lolo might have known. He hadn’t cut corners, though, or played all the angles. He was diligent and honest, no matter what it cost him. He had led his life according to principles that demanded a different kind of toughness, principles that promised a higher form of power. I would follow his example, my mother decided. I had no choice. It was in the genes. (50) In her resistance to Indonesian values she conveniently conflated the values of Obama père with those of the American civil rights movement (51)—thus in a way naturalizing her departed husband. At the same time, her son’s spectacular political trajectory was probably possible in part because he is African American in something other than the usual sense of the term: his patrilineage eclipses the history of American enslavement and oppression of blacks. (On the other hand, it inscribed his father’s Muslim heritage literally in his name.)

118  Filiation in Barack Obama’s Dreams from My Father Eventually, Barack, his mother, and his stepsister Maya, Lolo’s daughter, moved back to Hawai‘i, without Lolo, rejoining her parents. Shortly after their move, Obama père came to visit for a month. Ironically, rather than savoring his father in the flesh, young Barack found himself at times longing for the hero in the myth: “I decided that I preferred his more distant image, an image I could alter on a whim—or ignore when convenient” (63). In any case, after making a memorable appearance before his son’s class at school, Obama père returned to Africa. Although he was an imposing, sometimes charismatic, presence, his son found that even while present “he remain[ed] opaque . . . a present mass” as though the two lacked shared codes and modes of being (70). After college, the images of the Civil Rights movement “became a form of prayer” for Obama and inspired his career as a community organizer, which he characterizes in part as the attempt of a mixed-race American to place himself in a larger minority community, in which membership would have to be actively earned, rather than passively inherited (135). At first Obama felt that, rather than providing him with entrée to the world of inner-city Chicago, his exotic racial heritage and life narrative might alienate the locals. But as he progressively disclosed his background, he found them receptive. In any case, the “race and inheritance” of his subtitle are far from essentialist; indeed, they are not even constructionist in the academic sense of that term. Rather, they are performative, forged in struggle and communication. The son needed to create his own significant community, rather than derive it from his genes or his upbringing. During his time in Chicago (after his father’s death), he was visited by one of his African sisters. She provided a detailed account of his father’s complex marital and paternal history (after returning to Africa, he married a white American he had met at Harvard and had two children with her, but continued to “visit” his first wife, and may have fathered another of her children) and career (because of his status as a member of an ethnic minority, the Luos, his prospects dwindled and his income dried up). In the end he became alcoholic and abusive toward his third wife, taking comfort in occasional letters from his second wife, Ann. This news is disappointing and disillusioning but also may have obviated any Oedipal father-son rivalry: To think that all my life I’d been wrestling with nothing more than a ghost! For a moment I felt giddy . . . . The king is overthrown, I thought. The emerald curtain is pulled aside. The rabble of my head is free to run riot; I can do what I damn well please. For what man, if not my own father, has the power to tell me otherwise. Whatever I do, it seems I won’t do much worse than he did. (220–221) There’s loss here too, of course: “The fantasy of my father had at least kept me from despair. Now he was dead, truly. He could no longer tell me

Filiation in Barack Obama’s Dreams from My Father  119 how to live” (221). His father’s legacy seems far less clear, less useful, less inspirational, as a result of this deluge of information from an intimate inside source. It is only in the last third of the book, “Kenya,” that the narrative confronts his father’s legacy in any direct way, and as it happens, it is a difficult one for Obama to embrace. Reaching Africa, the apparent destination of the narrative, is a mixed blessing for the young community organizer seeking his roots. On the one hand, in a place where his patronym is not merely recognized but venerated and where his skin does not mark him out for attention—where he does not have to be constantly concerned about being taken as a confirmation of, or an exception to, a racial stereotype—he has a strong and welcome sense of belonging. On the other, his father proves to have been a complex man whose life turned out unhappily for him and his children: the children and wives he left behind are hardly one big happy family. In addition to exploring lateral branches, Obama traces the trunk of the family tree: at a climactic point he is introduced to his father’s mother, Granny, who provides a linear chronological narrative of his father’s descent and history. This is conveyed, implausibly, as one long speech— almost thirty printed pages (or approximately 8,000 words)—with only short interjections or interruptions. Obama may have tape-recorded the original story and edited it into its seamless shape, but no account is given of the process by which it moves from oral narrative to the printed page. Whatever its genesis and manner of mediation, it is unique in my experience of patriography as a narrative of the father in question. More typically, hidden or obscure back stories are researched by the author and presented piecemeal; here a single-sourced story is inserted whole into the larger narrative as if simultaneously heard, memorized, and accepted as authoritative. In the manner of folk genealogy the narrative begins with much begetting: First there was Miwiru. It’s not known who came before. Miwiru sired Sigoma, Sigoma sired Owiny, Owiny sired Kisodhi, Kisodhi sired Ogelo, Ogelo sired Otondi, Otondi sired Obongo, Obongo sired Okoth, and Okoth sired Opiyo. (394) In sharp contrast to the female-headed household in which the American Obama was raised, the African lineage traced here is explicitly and exclusively patriarchal: “The women who bore them, their names are forgotten, for that was the way of our people” (394). Obama’s ancestors were migratory herders, and some were polygamists: one of his namesakes had four wives (395) and his father had three, with two of whom he cohabited simultaneously.

120  Filiation in Barack Obama’s Dreams from My Father The family saga is in other ways not what Obama had imagined or hoped for: he is disappointed to learn that, far from being anti-colonialist, his grandfather Onyango was the first in his family to adopt European customs and attire, as a result of which he was ostracized (498). Similarly disillusioning is the narrative of his father’s life after his return from America. Either oblivious or resistant to Kenya’s clannishness, Obama senior failed to recognize that his personal merit and impressive credentials did not guarantee his success. And many of his descendants and dependents still resented his failure to cultivate those in power; his children embraced the values of the system that marginalized their Old Man, whose nonconformity cost him his livelihood and eventually his self-respect. Ironically, then, Obama fils discovers in Kenya that his father had not provided for his numerous African relatives any more than he had for his single American son. As an African patriarch he was an utter failure. If anything, his mythic legacy was of more use, as inspiration, to his abandoned American son than his presence was to his African family members, who relied on him for patronage that he could not provide and who fought bitterly over his estate after his death. On the one hand, then, the real man, the object of his son’s quest, proves a disappointment as characterized by those who knew him best; on the other, his American son had at least been insulated from the corrosive effect of witnessing his father’s decline into alcoholism. More to the point, he is forced to recognize that his patrimony no longer consists, if it ever did, in his father’s personal example (or that of his grandfather, Onyango) but rather in the fact that his paternity embeds him in a family that transcends national and racial boundaries. Through that legacy, he is given access to a rare and valuable African perspective on African American life. The narrative climax of the book comes with Obama’s empathetic—and emotionally cathartic—visions of his father and his grandfather at their gravesite. Obama senses that his legacy lies not in the traditional wisdom of his African father and paternal grandfather, but rather in the knowledge that each of these forefathers had to invent himself in radically new circumstances. That neither was completely successful is beside the point (427–428). The other element that he isolates from the complex multigenerational saga of his African forebears is perhaps the ultimate reward of this quest-a sense of being part of a global family, for better or worse: I saw that my life in America—the black life, the white life, the sense of abandonment I’d felt as a boy, the frustration and hope I’d witnessed in Chicago—all of it was connected with this small plot of earth [ancestral land] an ocean away, connected by more than the accident of a name or the color of my skin. The pain I felt was my

Filiation in Barack Obama’s Dreams from My Father  121 father’s pain. My questions were my brothers’ questions. Their struggle, my birthright. (430) Exactly what Obama makes of his paternal legacy in this characteristically eloquent passage—and indeed throughout the book—is not entirely clear; perhaps some ambiguity is not surprising in a man who eventually became a professional politician. Indeed, it is possible now to see and say that what we witness in this narrative is the construction of what would eventually—and improbably—become a usable past for a man who aspired to the American Presidency. The epilogue bears this out with its allusions to self-evident truths: “the spirit of Douglass and Delany, as well as Jefferson and Lincoln; the struggles of Martin and Malcolm and unheralded marchers . . . [interned] Japanese families, . . . Russian Jews, dust-bowl farmers,” and so on (438–439). The implication is that his father’s history holds some answers to his perpetual questions: “What is our community, and how might that community be reconciled with our freedom? How far do our obligations reach?” (438). What does seem clear and instructive is that, unlike the filial quest of Bill Clinton, which seems driven by an emotional hunger and a quest for personal validation—all the more remarkable in a post-Presidential memoir—Obama’s seems driven more by an intellectual curiosity as to who his father was and what his life meant. He does not, like Clinton, seek emotional comfort as compensation for being deprived of his “real” father and having grown up without a proximate father figure. Rather, he seems to want to understand, and learn from, the reality of his father’s complicated history. From it, he draws not emotional sustenance, much less reassurance, but rather a sense of global connectedness, personal responsibility, and (not incidentally) a sense of independence from a father he realizes could not serve as a model for his own life. And while he alludes to “Martin and Malcolm,” he does not adopt either as a father surrogate. The obvious connection to Malcolm, Islam, would be dangerous to emphasize as a legacy; with Martin, the connection to Civil Rights might seem forced for someone of Obama’s generation and background. So rather than situating himself squarely in the African American struggle, Obama looks beyond the shores of the U.S. to create an identity that is, if not postracial, multi-racial and multi-ethnic, and to fashion out of his father’s African legacy a more global and forward-looking heritage.

Note 1 I first used the term ‘filiation’ in print in ‘Genre matters: form, force, and ­filiation’, Life Writing 2.2 (2005): 123–40. The American Heritage Dictionary has it as a condition; that of being the child of a certain parent. I tweak it slightly to mean an act of identifying oneself as the child of a certain parent.

122  Filiation in Barack Obama’s Dreams from My Father

Works Cited Clinton, Bill. My Life. New York: Knopf, 2004. Print. Obama, Barack. Dreams from My Father: A Story of Race and Inheritance. New York: Random House, 1995. Print.

9 Disability, Depression, Diagnosis, and Harm Reflections on Two Personal Scenarios*

“What’s the use of their having names,” the Gnat said, “if they won’t answer to them?” “No use to them,” said Alice, “but it’s useful to the people that name them, I suppose.” —Lewis Carroll, Through the Looking Glass1

The Diagnostic Scenario Nancy Mairs has adroitly sketched the generic scene of diagnosis from the patient’s perspective: You sit in a tiny room, probably white, probably without windows, the walls decked with posters showing parts of your anatomy you might rather not contemplate. With luck you’ve got your clothes back on; otherwise you’re wearing a scanty smock that bares anatomical parts you’d definitely prefer no one else to contemplate. . . . Something is amiss, you know, or else you wouldn’t be here; unless you’re a doctor or a hypochondriac, you have no idea what the problem is, but you’re inclined to believe that the wonders of modern medicine will soon make it go away. Then the doctor raps once, slips through the door, and speaks your doom. (ix) Even when the patient initiates the process, the diagnostic scenario casts the patient in a subordinate position, rhetorically and politically. Moreover, as new diagnostic technologies have emerged and been refined, patients find themselves in an increasingly passive position in physicianpatient interactions: * Published first in Journal of Medical Humanities. 40(2), December 2019. DOI 10.1007/s10912-016-9420-6. Reprinted here by permission of Springer Nature.

124  Disability, Depression, Diagnosis, and Harm [The role of patients] in discourse has shifted profoundly; no longer the sources of invaluable testimony to their symptoms and suffering, patients are subjected to oral interrogation or technological screening or scanning. Patients have moved from a position of unique and privileged subjectivity to one of quantified objectivity, from the source of personal testimony to the source of bodily specimens. However impressive the technologies of detection, diagnosis, and treatment developed by modern clinical medicine, they have been accompanied by shifts in discourse and in the position of the patient in that discourse, such that medical ‘care’ has sometimes been purchased at the cost of the silencing or disenfranchisement of the patient. (Couser 23) Thus, “discourse between patient and doctor occurs in a way that may be at odds with the root meaning of communication, the making common of information: professionalism shapes [medical discourse] to serve physicians’ needs more than those of patients” (Couser 20–21). Biomedicine is a discipline in two related senses of the word: an academic/professional field and a form of control. Among academic fields, it exerts a large and increasing amount of power over human affairs. And in the clinic, physicians wield power in a mild form of what Foucault referred to as disciplinary power. As a figure of credentialed authority, the physician pronounces diagnosis to an initially passive partner, the “patient,” who may struggle to understand, much less to assimilate, the news. Let’s assume the best case here: the patient has requested a diagnosis, and that diagnosis is accurate. Ideally, identifying the patient’s condition will lead to effective treatment, if not an outright cure; as Mairs puts it, “the wonders of modern medicine will soon make it go away.” Even when the condition diagnosed is dire, stigmatic, or life-threatening (Mairs’s “doom”), diagnosis may offer some comfort insofar as it provides an explanation for bothersome symptoms, a measure of clarity to one’s life narrative. Indeed, in the case of disability, though the diagnosis may be considered “bad news” by definition—nobody wishes to be disabled—the medical confirmation of disability status may be welcome insofar as it promises access to accommodation or special services. Consider the contemporary “epidemic” of autism. The apparent increase in the rate of autism is a function not of its increasing incidence but of changes in its definition and heightened alertness to its signs and symptoms. This in turn has in part to do with availability of special programs for affected children. Thus, for very different reasons, parents may at the same time dread and welcome a diagnosis of autism. So I do not mean to suggest that the power of diagnosis is a bad thing. Obviously, diagnosis can be beneficial. But diagnosis does not always occur in ideal scenarios, and even when it is accurate, it may have deleterious effects. Diagnosis is most helpful when the condition is acute and

Disability, Depression, Diagnosis, and Harm  125 curable, or at least treatable; diagnoses of chronic illness and disability are less beneficial. For example, Mairs’s diagnosis was multiple sclerosis, for which biomedicine offers no cure and little in the way of effective treatment; hence her “doom.” With chronic illness and other disabilities, the benefit of diagnosis is more psychological—knowing what ails one— than practical—attaining relief. In any case, diagnosis and its partner, prognosis, are speech acts with significant consequences beyond the purely biomedical realm: they affect—and indeed may effect—the patient’s identity and can (re)write the patient’s prospective life narrative. The thrust of this essay is to encourage physicians to recognize, and fully reckon with, the ramifications of diagnosis and prognosis as “declarative speech acts”—that is, speech acts that can create new states of being.

Post-partum Diagnosis of Disability The power of diagnosis at the beginning of life was recently brought home to me quite literally and unexpectedly. In early December, 2015, my 39-year-old niece Maria delivered her first child. As a mother of “advanced maternal age,” Maria had had her fetus screened for various conditions. In mid-pregnancy, her fetus tested positive for Tetralogy of Fallot (ToF), an abnormality that involves four separate heart defects—a daunting diagnosis. Fortunately, these defects are surgically correctible in the first few months of life, and Maria and her partner set about arranging for the eventual operation. Not long afterward, the parents were told that ToF might be a marker for DiGeorge syndrome, a chromosomal irregularity with far more serious and widespread effects, including cognitive deficits and elevated risk of schizophrenia. Indeed, the prognosis for DiGeorge is so dire that the parents decided that they would terminate the pregnancy if the fetus tested positive. After a few weeks of torturous uncertainty, the test result was negative, to the parents’ great relief. ToF babies are sometimes delivered in distress, with poor circulation— so-called “blue babies.” For this reason, there was a pediatric cardiologist available in the delivery room when Maria delivered her son, Jack. Labor went smoothly, and upon arrival Jack appeared healthy, his complexion normal. Though exhausted, his parents were thrilled. Only a few hours later, however, in the neonatal ICU a pediatrician took Maria aside and informed her that Jack displayed signs of CHARGE syndrome. CHARGE is a somewhat unfortunate acronym for a set of deficits in various organ systems—cardiac, gastro-intestinal, genito-urinary, and especially sensory (vision, hearing, balance, and smell). CHARGE babies are generally classified as “deaf-blind” and may be subject to developmental delays. CHARGE is not only rare (occurring in perhaps one of ten thousand births), it is extremely difficult to detect. There is a chromosomal marker,

126  Disability, Depression, Diagnosis, and Harm but the test for it is so expensive and so unreliable—yielding lots of false positives—that it is rarely performed during pregnancy. Indeed, even after birth, the condition is tricky to diagnose even after birth without the chromosome test. One sign is an anomalous configuration of the ears; the NICU pediatrician had probably noticed this in Jack. On that basis alone, however, she was in no position to make a definitive diagnosis— much less to ambush a new mother with it. The only way I can make sense of her volunteering this unsolicited diagnosis is to imagine that this was, to her, a once-in-a-career occurrence, and she wanted to “own” it professionally.2 This diagnosis was given to my niece when she was alone and vulnerable, without any explanation, elaboration, or context; she was left to share the news with her partner. Looking up CHARGE on the internet, they were devastated by what they learned. They found themselves in the very situation they thought that they had avoided: parents of a significantly disabled newborn. (Indeed, had they known the fetus had CHARGE syndrome, they likely would have terminated the pregnancy.) In the next few days, specialists bombarded them with bad news about Jack’s vision and hearing; they found these consultations so painful that they called a short moratorium on further briefings, which not all parents might feel empowered to do. Obviously, this diagnostic scenario was far from ideal. Although newborn babies are routinely scrutinized and evaluated (and assigned an “APGAR” score)—and Jack’s heart had been of particular concern—his parents had not presented him for diagnosis, nor were they anticipating one; furthermore, none of the several medical professionals in the delivery room had detected any anomalies. So the news was particularly shocking when delivered. (The parents filed a complaint with the hospital about the initial pronouncement but did not “pursue” it—i.e., seek compensation for the unnecessary suffering.) When this news was relayed to me, I shared the parents’ shock, their pain, and their grief. I realized that the newborn baby, Jack, was the same person after this devastating diagnosis that he’d been before it. His condition hadn’t changed; he’d been born with it. Yet his situation—his circumstances, his identity—had changed suddenly and radically. Consider that, while a diagnosis of cancer does not give a person the disease, it confers a new identity on her—that of cancer patient—and, in worst-case scenarios, may radically alter her life expectancy, with all that that entails. Similarly, so much is altered by a diagnosis like this—the parents’ emotions, their expectations for their child, their projected narrative of their lives together—that it qualifies as a declarative speech act, an utterance that creates a state of affairs merely by announcing it, as when a qualified official declares a couple to be married. His diagnosis categorized Jack adversely at a crucial moment in his and his parents’ lives: suddenly,

Disability, Depression, Diagnosis, and Harm  127 shockingly, this adorable baby was determined to be seriously disabled; his prospects, though very uncertain—CHARGE syndrome has a wide spectrum of effects—seemed quite grim, so much so that his parents initially kept his diagnosis a secret from all but family and close friends—not out of shame or embarrassment but in order to preempt pitying responses at a sensitive time and to preserve their privacy while they absorbed the news. Their announcement of Jack’s birth was overshadowed by what they knew but weren’t saying—a dreadful situation for new parents. There may be no good time for such a devastating diagnosis. And sooner may be better than later. Absent the gratuitous and premature diagnosis, Jack’s deficits would have eventually become evident; perhaps the parents were spared a long period of confusion and uncertainty about their baby’s capacities. Moreover, there are advantages to having deficits identified sooner rather than later. Early diagnosis can mean early intervention—a practical as well as a psychological benefit. However, the timing of this diagnosis deprived Jack’s parents of all but the briefest post-partum honeymoon. Indeed, after a few hours of euphoria, it plunged them into a period of real pain and despair, some of the worst days of their lives. One aspect of diagnosis that I hadn’t previously thought much about is the matter of its “ownership.” To whom does diagnosis belong? Most obviously, diagnosis belongs to the patient: after all, it purports to identify a condition of his or her body and only that body. It announces the patient’s fate, first and last.3 But in this case, the party most directly affected is also the least concerned; CHARGE will determine much about Jack’s life, but he is so far blessedly oblivious to his diagnosis. Indeed, in his first months of life, he looked, and acted, much like any other newborn. His lack of hearing was not immediately apparent. At the same time, even as specialists warned his parents that he might lack ocular nerves, it was quite obvious to anyone who interacted with him that he was responsive to faces, and later tests revealed that his vision is 20/130 or so. (But his colobomas render him legally blind.) As Simi Linton reminds us, “The noun patient is a role designation that is always relational. A patient is understood to belong to a doctor or other health care professional, or more generally to an institution (29, emphasis added). And, as should already be evident, there’s a sense in which diagnoses belong to the physicians who make them. In my niece’s case, as I’ve suggested, the physician may have wanted to be the first to make the diagnosis—perhaps to follow it up later for clinical purposes (and career advancement). Priority would stake her claim to her diagnosis. In the short term, however, the diagnosis of CHARGE belongs not to Jack, who “has” CHARGE but is unaware of it nor to the pediatrician who pronounced it and the specialists who confirmed it but to Jack’s parents, for whom it is immediately and drastically life-changing. In fact, the initial effect on them was so traumatic that I feared that Jack might

128  Disability, Depression, Diagnosis, and Harm sense, and suffer from, their anguish over his diagnosis. How much, I wonder, might their understandable sadness affect him? To what extent could he be buffered from their grief? Would they inadvertently confer their pain onto him? Would this diagnosis complicate their bonding with him at this crucial time? As someone versed in Disability Studies, I am aware that some of their anguish reflected both the outright stigma of disability and common, but mistaken, presumptions about disability and quality of life. The notion of presumption introduces a consideration left out of the discussion thus far: prognosis. Conceptually, diagnosis and prognosis are distinct—the former declares what is, the latter what is likely to be—but in practice the two are linked. To be diagnosed is in effect to have one’s future predicted, if not pre-scripted. And therein lies more potential for damage—and a distinction according to the kinds of conditions diagnosed. The prognoses of treatable illnesses change with the state of the art of biomedicine; for example, survival rates for some cancers have improved significantly with advances in treatment techniques. But with conditions that are not amenable to treatment (like disabilities and some illnesses), prognoses are affected more by social, legal, and cultural than by biomedical factors. Thus, in the 1950s and 1960s, when I was growing up, the prognosis for a child with a developmental disability like Down syndrome or autism might have been life-long dependence and institutionalization; today, it should indicate “mainstreaming” or inclusion—i.e., education alongside typical children in the same schools and classrooms. Since the passage in 1974 of the Individuals with Disabilities Education Act (IDEA, initially known as the Education for All Handicapped Children Act), all children have been legally entitled to an education in the “least restrictive environment” (LRE). So the improvement in the quality of these children’s lives is not a function of new treatments for these conditions, which are intractable; rather, it has to do with greater awareness of their potential, on the one hand, and provision for reaching that potential, on the other. It thus reflects the “social model” of disability, which distinguishes impairment, which is located in the individual’s body, from disability, which is found in aspects of the environment— attitudinal, social, cultural, architectural, and legal—that disadvantage people with impaired bodies. This linkage between diagnosis and prognosis reinforces my earlier point that diagnosis can function as a “declaration,” bringing into being a new state of affairs. In 1960, a child with a diagnosis of Down syndrome would have been declared ineducable, and, as a result of that presumption, would not have been educated—a negative feedback loop and a selffulfilling prophecy. The diagnosis, and not Down syndrome itself, would have condemned the child to isolation and marginalization. In teaching the issue of disability-selective abortion, I have long advocated for generosity in estimating quality of life for children expected

Disability, Depression, Diagnosis, and Harm  129 to have genetic or congenital impairments. When I heard Maria’s news, however, I realized that these issues look very different close up, within one’s own family circle. It is hard, especially without sensitive preparation, to react with unreserved joy to the birth of a newborn family member who has a significant, incurable disability. Indeed, I was initially as devastated by Jack’s diagnosis as his parents and grandparents were (mostly by the prospect of the difficulty of communicating with a deafblind grandnephew). At the same time, I was immensely reassured when I had the opportunity to see and hold Jack, who happens to be a very resilient and cheerful baby. The encounter confirmed the distinction between the diagnosis and the person: the former is abstract and generic, the latter tangible and unique. Before I met him, I confess, Jack was his diagnosis; afterward, he was this precious child. A distinction been pain and suffering is also pertinent here. As a result of CHARGE, Jack has been subjected to a great many medical procedures—open-heart surgery, the insertion (and re-insertion) of naso-gastric and intestinal feeding tubes—and a plethora of tests and examinations. Obviously, then, his having CHARGE has entailed a good deal of pain and discomfort for him even after his release from the NICU. But, unlike the rest of his immediate family members—parents and grandparents, uncles and aunts—he does not seem to have experienced much suffering (emotional distress). In contrast, his parents have experienced no physical pain but a good deal of suffering. His diagnosis and prognosis come with a long list of things he may “never” do: communicate orally, play sports, read print, drive a car, have children. His parents suffer, as their expectations for Jack are dashed. But Jack has no expectations, and at present he seems to enjoy his life. His limitations cause suffering to his parents, but not, so far, to him. For obvious reasons, newborns are not capable of assessing and reporting their own quality of life. (And the checklists used by medical professionals focus on observable, measurable capabilities rather than the inward experience of the subject; as such, they seem inherently biased— indeed, quite beside the point.) However, there is every reason to believe that, like most people born disabled, as Jack grows up, and is able to do so, he will rate his quality of life as quite good. Indeed, one of the major obstacles to the delivery of health care to disabled people is the well-established disparity between their reports of their quality of life and the estimates of their quality of life by medical professionals. In survey after survey, disabled people rate their quality of life as about as high as nondisabled people rate theirs. This is known as the “disability paradox.” And nondisabled health care professionals render even lower estimates of the quality of life of disabled people than the general nondisabled population. Presumably, this reflects their professional investment in, and commitment to, “health” as a state of being, but it may have deleterious implications for patients with disabilities.

130  Disability, Depression, Diagnosis, and Harm If we probe this bias a bit, we may be able to reduce or minimize it. One approach to understanding the underestimation of the quality of life of people with disabilities hinges on a psychological phenomenon called the focusing illusion (Amundson 2010). This comes into play when experimental subjects have their attention directed to a single aspect of a larger phenomenon. Thus, when nondisabled people are asked to estimate the quality of life of a disabled person (in the abstract), the very question provides a focus that skews the result: they are asked to estimate the quality of life of someone about whom they know only that he or she is disabled. Similarly, in an encounter with a patient, a visible anomaly may focus a medical professional’s attention of a factor that may be irrelevant to their interaction. In contrast to theses outsiders’ estimates, however, when disabled individuals are asked to assess their own quality of life, their response is multi-factorial and holistic and thus more positive overall. Significantly, the same is true when the rating is done by friends, partners, or close relatives. Amundson quotes two researchers who concluded, “The less you know about paraplegics, the worse off you think they are” (2010). With these things in mind, in the aftermath of Jack’s birth, I have done what I can—with help from colleagues in Disability Studies—to disabuse Jack’s parents of the most negative presumptions about his possible deficits. Indeed, a query I posted to a list-serv immediately yielded multiple helpful (and non-pitying) responses—referrals to institutions like the Perkins School for the Blind; to organizations like the CHARGE foundation; and to families with CHARGE children. The disparity between the biomedical diagnosis and these responses suggests one reason that medical education should incorporate Disability Studies—so that diagnosis of congenital disability may be less injurious and that parents of newborns with birth defects may greet them more equably. Indeed, parents of such children should be immediately referred to the real experts on their condition—other parents, who usually have bonded with their children and seen beyond their diagnoses. More to the point here, this discrepancy demonstrates that the act of diagnosis can be fraught with ethical dangers, that diagnosis—even when it is correct—can cause harm.

Late-life Diagnosis of Depression Let me turn now from diagnosis at birth to diagnosis in late middle age, from my grandnephew to my father, and from disability to depression. In his late sixties, my father, a seemingly contented husband, father of two, and respected high school English teacher, became deeply depressed. This led to intermittent binge drinking, presumably as a form of selfmedication. When outpatient psychotherapy failed to help, he reluctantly agreed, in 1973, to enter McLean Hospital, one of the United States’ premier mental health facilities. In researching a memoir of him, long after

Disability, Depression, Diagnosis, and Harm  131 his death, I obtained his McLean records in the hope that they would shed some light on this troubling final phase of his life. For my sake, for his sake, for the sake of his physicians, I wish that they had. But his medical records revealed less to me about the cause and course of his depression than about the fallibility of such records and indeed of diagnosing mental illness. There’s a sense in which all illnesses are socially and culturally constructed, but this is particularly apparent with mental illnesses. Indeed, the evolution of definitions and categories through the five editions of the “bible” of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders (hereafter DSM) reflects—or perhaps enacts—the process of social construction. And this is one basis of a Disability Studies critique of psychiatry. The fundamental “move” of the social model of disability is to reverse figure and ground, deflecting attention from the individual anomalous body (or psyche) to the culture that surrounds, labels, and marginalizes that body. (This does not entail claiming that there is no such thing as mental illness, only that what is understood as such is subject to social and cultural preconceptions.) The depathologizing of homosexuality, which was removed from the third edition of the DSM (DSM-III) published in 1980, is perhaps the most striking example of how what is thought to constitute mental illness is subject to changing mores and cultural values, and thus always fungible, contingent, provisional. A subtler example is found in Susanna Kaysen’s Girl, Interrupted, her popular memoir of a lengthy sojourn at McLean in the late 1960s. Kaysen devotes an entire chapter to the DMS-II entry on Borderline Personality Syndrome; in the following chapter, she interrogates “My Diagnosis.” She quotes her psychiatrist as confessing its cultural and generational bias— “That’s what they call people whose lifestyles bother them” (151)—and goes on to expose the gender bias underlying some diagnostic criteria, like “casual sex,” which is disproportionately diagnosed in female patients. Referring to the removal of homosexuality from the DSM-III, she declares, “Maybe in another twenty-five years I won’t be in there either” (152). The social construction of psychiatric disorders means that the specialty wields a particularly potent, and potentially insidious, kind of disciplinary power: “The . . . [DSM] provides the official justification of psychiatry’s expanding control over what some have labeled the ‘medicalization of deviance’” (Kirk and Kutchins 8). At the same time, it exposes psychiatry’s fundamental insecurity, for the DSM’s changes rarely reflect “progress” as it is usually measured in biomedicine. “Although the value of diagnosis is rarely questioned in most branches of medicine, it has been disputed in psychiatry for decades, because the therapeutic and prognostic implications were viewed as weak and the diagnoses themselves as unreliable” (Kirk and Kutchins 22–23). The psychiatric profession has been sensitive to this conundrum. Indeed, the adoption of “descriptive

132  Disability, Depression, Diagnosis, and Harm nosology” in DSM-III (1980) was intended to stabilize and regularize definitions and diagnoses of mental illnesses. My father was treated and diagnosed under the DSM-II, and his case points up the kind of shortcomings that the third edition was meant to address. After a stay of nearly four months—interrupted when he took a brief leave against medical advice—he was discharged on May 1, 1973, without discernible improvement. Two years later, he was dead. In clinical terms, his death was a result of organ failure due to sustained alcohol abuse. Without denying that, I attribute it to depression. Because of his unauthorized leave, my father was discharged twice within a three-week period. To my astonishment, his two discharge summaries have almost no diagnostic terms in common. Granted, the summaries were written weeks apart by different physicians; still, the two physicians were consulting the same records about the same patient. The lack of consistency is quite striking. In early April 1973, the discharge diagnoses were: 1. Alcoholism, alcoholism [sic] addition, medically improved. [read: detoxed] 2. Involutional depression, Involutional melancholia, moderately improved 3. Obsessive compulsive personality, unchanged. Three weeks later, the discharge diagnoses were: 1. Depressive reaction 2. Passive aggressive personality and alcohol addiction 3. Simple drunkenness, improved [read: detoxed]. In the most general terms, the summaries are in agreement: my father was alcoholic and depressed. At this time in his life, despite his vehement, defensive denial, Dad was undoubtedly an alcoholic. Still, I take exception to the term “simple drunkenness” in the second summary—not because it is not a clinical term (it does not appear in the DSM-II’s quite extensive list of Alcoholic Psychoses [291.0-291.9])—but rather, because my father’s alcoholism seemed far from simple. In my experience, he had never abused alcohol before his sixties. (I have no way of knowing how he used it as a young man.) His drinking in mid-life was apparently not an exacerbation of an earlier tendency but a quite sudden and surprising irruption. He would start to drink surreptitiously, at night, after my mother fell asleep and continue until he was incapacitated—a pathological and self-destructive pattern. So even on this seemingly obvious matter, the McLean doctors seem to have missed the mark. Also troubling is that the two summaries ascribe different personality disorders to him: Obsessive Compulsive (301.4) in the first, Passive

Disability, Depression, Diagnosis, and Harm  133 Aggressive (301.81) in the second. In my view, Dad was neither rigid nor perfectionist. At the time of his hospitalization, he may have seemed obsessive in his tendency to dwell on the negative—a trait of depressives—but I would attribute “excessive concern” with conscience to guilt over his drinking, rather than a preexisting trait. According to the DSM-II, passive-aggressive “behavior commonly reflects hostility which the individual feels he dare not express openly. Often the behavior is one expression of the patient’s resentment at failing to find gratification in a relationship with an individual or institution upon which he is over-dependent” (44). At this time in his life, Dad had become pathologically dependent on my mother, who initially covered for him; to protect his reputation, she became his enabler. No doubt he resented his dependency on her. But I suspect that the McLean diagnosis of “passive-aggressive personality” also has do with his resistance to treatment protocols. (A contingent behavior has again been generalized to a personality type.) Although Dad certainly needed psychiatric help—and I wish he had been a more compliant patient—I sympathize with his resistance to the regimen of what Erving Goffman refers to as “total institutions.” The entire set-up of such institutions seems inherently, and counterproductively, infantilizing: patients’ days are regimented; therapeutic activities and appointments are scheduled; meds are doled out at prescribed intervals; meals and maid service are provided. At the same time, paradoxically, patients are urged to take responsibility for their recovery. The institution seems to send mixed messages, placing patients in a kind of double, disabling, bind. Obviously, Dad was depressed: always mildly, at times acutely, and in late middle age, deeply and chronically—indeed, terminally. But here, too, the diagnoses differ significantly. “Involutional depression” (Major Affective Disorder 296.0, “Involutional melancholia,” in DSM-II), refers to endogenous depression, brought on by the deterioration of the body that occurs naturally with ageing. But that’s a description, not an explanation: why is ageing accompanied by depression in some people but not in all? And Dad’s admission physical showed that, aside from his depression and alcoholism—indeed, in spite of them—he was in remarkably good condition for his age. “Depressive reaction” may refer to Psychotic Depressive Reaction (Psychosis 298.0) or, more likely, to Depressive Neurosis (Neurosis 300.4). Both terms refer to depression triggered by some life event. But no one—not Dad, not his referring therapist, and not McLean’s psychiatrists—identified any developments in his life that might have precipitated his depression. The point of diagnosis is to direct successful treatment: “Making a diagnosis is a pivotal clinical decision that summarizes the practitioner’s understanding of the disorder and guides the clinician to select a disorder-specific treatment” (Kirk and Kutchins 23). In view of the fact that

134  Disability, Depression, Diagnosis, and Harm Dad’s treatment at McLean ran the gamut—from talk therapy and a slew of psychotropic meds to electro-shock—without lasting benefit, perhaps misdiagnosis was not the whole problem; his depression proved to be highly “treatment-resistant.” But the McLean diagnoses not only failed to lead to effective treatment; they seem deficient in narrative terms. From my perspective, as his son and memoirist, McLean personnel seem more concerned with classifying Dad than with understanding him. What I seek is causation, explanation, and understanding, rather than categorization. And I think he could have benefitted from more attention to his story than to diagnostic categories. My father’s case certainly illustrates what the professionals call lack of “interrater reliability,” and this may have been in part a function of the methodology of the DSM-II. But I rather doubt that he would have fared better if diagnosed under the next edition, with its shift to “descriptive nosology.” In Manufacturing Depression, Gary Greenberg observes that this change in methodology meant “that diagnosis is focused not on personalities or causes of mental illnesses but on lists of symptoms . . . [observable] criteria, . . . designed to meet statistical standards like interrater reliability (my emphasis 63). But reliability from practitioner to practitioner is not the same as validity. For one thing, the DSM’s many disorders are not discrete entities: their symptoms overlap. For another, there are (as yet) few, if any, known biomarkers for the disorders, so questions and checklists take the place of scans and tests of bodily fluids. Diagnoses of mental illness, while not completely free-floating and arbitrary, are at best lightly grounded in physiology. As a result the DSM-III creates an anomalous biomedical specialization, psychiatry, in which “the symptoms constitute the disease and the disease comprises the symptoms.” According to Greenberg, diagnosing someone with depression is like diagnosing them with chest pain. When a patient presents with chest pain, no competent physician would consider “chest pain” an adequate diagnosis; the patient would be tested for various conditions that might be causing the chest pain. But with depression, the symptom is considered to be the disease and vice versa. In Moving Beyond Prozac, DSM, and the New Psychiatry: The Birth of Postpsychiatry, Bradley Lewis had analyzed how and why the supposedly theory-neutral, non-narrative “new psychiatry” inscribed in the DSM-III displaced its predecessor. Of course, there are economic factors in the concurrent shift away from psychotherapy to psychopharmacology: prescribing drugs is less labor-intensive and more “efficient” than face-toface talk therapy. Indeed, it is “scalable.” More to the point here, Lewis has sketched out a post-empirical “postpsychiatry” that is more sensitive to cultural and social factors such as gender, age, and ethnicity, more democratically interactive in its administration, and more attuned to narrative. Thus, just as “narrative medicine” is gaining adherents among general practitioners, so there is a movement to reinstate narrative therapy

Disability, Depression, Diagnosis, and Harm  135 in contemporary psychiatry. As a psychotherapist, Greenberg favors a narrative approach to mental illness, especially neuroses. As he puts it, psychotherapy (as distinct from psychopharmacology) is “the only profession built on the idea that changing the story we tell about our suffering can relieve it” (24). Several other therapists also argue for the restoration of narrative to prominence in psychiatry: notably the aforementioned Lewis in Narrative Psychiatry: How Stories Can Shape Clinical Practice (2011) and SuEllen Hamkins in The Art of Narrative Psychiatry (2013). Indeed, as reported by the New York Times science writer Benedict Carey (“An Alternative Form of Mental Health Care Gains a Foothold”), new holistic approaches are emerging that eschew diagnostic labels, at least initially. I can’t help thinking that had Dad and his therapists been able to construct a better narrative of his life, that endeavor might have been more therapeutic than the pharmacopeia and ECT he was subjected to. My father’s therapists did not succeed in helping him understand, much less change, the story of his suffering. In researching his life and writing his memoir, however, I have arrived at an explanation of his late-life depression that I find compelling. It has to do with a trauma he suffered at the age of two, when an older and a younger sibling died within a month. I believe he was too young to comprehend this sequence of events when it happened, and thus was never able to address it in therapy. I believe, too, that the emptying of the domestic nest when his two children (my sister and myself, like his dead siblings an older girl and a younger boy) went away to college in quick succession reenacted his earlier trauma and triggered his depression. This seems so obvious to me that I wonder how his therapists could have overlooked it. But, as my father evidently did not consciously register (or “remember”) his infantile trauma, his therapists would have no way of relating it to his late-life psychological collapse, unless they had carefully inspected his family tree, as I did. I have no way of knowing whether my father might have benefitted from seeing his depression the way I do, as the detonation of a long-latent time-bomb in his psyche; it might have made no therapeutic difference. But I think it would have made narrative sense to him, as it does to me. And it might have helped him see himself not as pathological, a deviant personality, but as someone suffering from a long-term trauma for which he bore no responsibility. It might have made his suffering understandable—and thus more bearable—as an integral part of a coherent, if painful, life narrative. Let me acknowledge here significant differences between my two scenarios of diagnosis. My niece did not solicit her son’s diagnosis, whereas my father did seek treatment for his depression. Also, Jack’s diagnosis was explicitly (if inappropriately) pronounced to his mother, whereas my father’s diagnoses may never have been directly delivered to him. I

136  Disability, Depression, Diagnosis, and Harm rather doubt, for example, that he ever saw the discharge summaries that I obtained long after his death. But let’s consider how he might have registered these diagnostic terms, had they been conveyed to him in any way. (A smart man, he must have had some sense of how his physicians saw him.) Even leaving aside their (to me) glaring inconsistencies, is it possible that they could have provided him with any insight into himself? Or do they rather render an unflattering appraisal of him (as passive-aggressive, or obsessive compulsive)? Despite the fact that diagnosis is supposed to be a medical, rather than a moral, assessment, how could he not feel diminished by these terms, when he was in such a fragile state? And is this a particular danger of the diagnosis of mental illness generally? As with diagnoses of disability, the generic quality of psychiatric diagnoses can be counterproductive, as least from a patient’s point of view. In an incisive critique of contemporary narratives of depression, Lee Zimmerman has noted that depression narratives frequently offer .  .  . reassurance by evoking depression as a medical condition, and while this can be a useful construction, if its limits are not appreciated, it can backfire. I was told by a prominent psychopharmacologist, for instance, that I had “garden-variety depression.” Such a pronouncement is likely meant to reassure both patient and doctor—to imply that we know just what is going on here, there’s nothing “wild” about it—but to me it also suggested a profound, and depressing, failure to acknowledge the intensity, the wildness, of my experience. He could reach his conclusion only by misunderstanding me, by translating my halting, obviously inadequate attempts to articulate my experience into a graspable list of straightforwardly defined “symptoms.” This helped him decide on a “treatment,” but it also reinforced my sense of intense isolation and left me wondering: which is worse, utter isolation or being reduced to a type? (466–467) Obviously, psychiatric diagnosis raises ethical issues peculiar to the specialization. My concern here is primarily with the possibility of iatrogenic damage to patients. And I am troubled by the power of labels—in and of themselves—to hurt people in the exercise of psychiatry’s disciplinary power. In researching this piece, I was interested to learn from Kirk and Kutchins that psychiatry has acknowledged the danger of harm to patients: Ironically, in making diagnoses, clinicians frequently want to use “the least noxious diagnosis,” acknowledging the well-recognized negative effects of psychiatric labeling. Clinicians do this to minimize communicating damaging, confidential information to insurance companies and others, to avoid the labeling effects of more severe

Disability, Depression, Diagnosis, and Harm  137 diagnoses, and to limit the adverse impact on the client’s self-esteem if the client becomes aware of the diagnosis. (emphasis mine 232). Of course, while contemporary privacy laws serve to protect patients from dissemination of their diagnoses to third parties, they do not allow physicians to withhold diagnoses from patients themselves. This is another reason to favor narrative in therapy, clarification over classification. Ideally, the diagnostic encounter will initiate a more collaborative, meaning-seeking relationship between clinician and patient.

Conclusion: Diagnosis and/As Harm It would be silly to argue “against” diagnosis, which is a clinical necessity and ideally beneficial to the patient, even when the news is grim. But despite their evident differences, these two scenarios involving people close to me have both caused me to wonder whether sometimes the mere act of diagnosis may violate the bioethical principle of doing no harm. Ideally, physicians will take into account the impact of diagnostic labels on their patients, in the long, as well as the short, term, remembering that they categorize and generalize and that they may not just be hurtful (painful for patients to internalize) but harmful (affecting how they are perceived and treated by others). Recognizing that diagnosis can be damaging, physicians may be better equipped to anticipate and avoid any harm. Ideally, the process of diagnosis and prognosis should engage the patient and clinician in a truly communicative encounter, a sharing of perspectives that transcends the merely biomedical, that renders the diagnostic “names” beneficial to those that “have” them, as well as to those who name them. After all, diagnosis is never an end in itself but rather a means toward the provision of care attentive to the individual’s needs.

Notes 1 I have borrowed this epigraph from Kirk and Kutchins. 2 Months later, a test confirmed the diagnosis. 3 Sometimes, of course, they are merely “provisional,” necessary for bureaucratic, rather than clinical, reasons: i.e., to justify tests. As such, there’s a sense in which they “belong” to the insurance agencies that require them. But they may also shock a patient who carries away a form that inscribes a diagnosis that has not been mentioned by her physician.

Works Cited American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders II. Washington: American Psychiatric Association, 1968. Print. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders III. Washington: American Psychiatric Association, 1980. Print.

138  Disability, Depression, Diagnosis, and Harm Amundson, Ron. “Quality of Life, Disability, and Hedonic Psychology.” Journal for the Theory of Social Behaviour 40(4), 2010: 374–392. Print. Carey, Benedict. “An Alternative Form of Mental Health Care Gains a Foothold.” New York Times, 9 August 2016. http://www.nytimes.com/2016/08/09/health/ psychiatrist-holistic-mental-health.html. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Print. Goffman, Erving. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Chicago: Aldine, 1961. Print. Greenberg, Gary. Manufacturing Depression: The Secret History of a Modern Disease. New York: Simon and Schuster, 2010. Print. Hamkins, SuEllen. The Art of Narrative Psychiatry. New York: Oxford University Press, 2013. Print. Kaysen, Susanna. Girl, Interrupted. New York: Random House, 1993. Print. Kirk, Stuart A., and Herb Kutchins. The Selling of DSM: The Rhetoric of Science in Psychiatry. New York: Aldyne de Gruyter, 1992. Print. Lewis, Bradley. Moving Beyond Prozac, DSM, and the New Psychiatry: The Birth of Postpsychiatry. Ann Arbor: University of Michigan Press, 2006. Print. Lewis, Bradley. Narrative Psychiatry: How Stories Can Shape Clinical Practice. Baltimore: Johns Hopkins University Press, 2011. Print. Linton, Simi. Claiming Disability: Knowledge and Identity. New York: New York University Press, 1998. Print. Mairs, Nancy. Foreword. Recovering Bodies: Illness, Disability, and Life Writing. Ed. G. Thomas Couser, ix–xiii. Print. Zimmerman, Lee. “Against Depression: Final Knowledge in Styron, Mairs, and Solomon.” Biography 30(4), 2007: 465–490. Print.

10 Vulnerable Subjects Caveat Scriptor*

Before I launch into my real subject, some moral hazards of writing about illness and disability, let me affirm the value of this enterprise. I have devoted the latter half of my career to reading and writing about illness and disability; I would not have done so unless I found such narratives compelling and significant. Since I began noticing them in the early 1990s, narratives of illness and disability have continued to proliferate—first in the U.S., and now beyond. And today, even as psychiatry moves away from narrative therapy toward drug therapy, narrative competence is being emphasized—at least by some (notably Rita Charon)—in the treatment of non-mental illness. This is all to the good. In her introduction to Depression and Narrative: Telling the Dark, Hilary Clark said it well: We should listen to personal narratives of illness and disability— really attending to them on their own merits, as opposed to using them in order to come to diagnoses and impose regimes of treatment—because such narratives give voice to the ill, the traumatized, and the disabled, those trying to make sense of catastrophic interruptions or shifts in their lives and help them navigate the bewildering, impersonal context of medical diagnosis and treatment. (3) Of course, such narratives are hardly limited to the clinic. Indeed, I have argued that in the U.S., the “memoir boom” coincided with, and to some extent was driven by, the rise of what I have dubbed the “some body memoir.” Not the “somebody memoir”—the story of a celebrity. Rather, the story of a hitherto unknown person—a nobody—who has an anomalous somatic condition. I have compiled a long list of conditions, from anxiety and autism to Tourette’s and vitiligo, that have generated memoirs in the last twenty years. Indeed, illness narrative has been something of an American literary epidemic of late. Whether inside or outside the * I gave this lecture at the Conference: Attentive Writers: Healthcare, Authorship, and Authority” at Glasgow University, Scotland, August 2013.

140  Vulnerable Subjects clinic, such narratives can be in and of themselves restorative, if not healing. So please do not misunderstand me. Nothing I say today should be construed as intended to discourage writing about illness and disability. My concern is to alert writers to pitfalls inherent in this endeavor. Hence my subtitle, “Caveat Scriptor”: writer, beware. “Vulnerable Subjects” is the title of a book I published ten years ago. The subtitle, “Ethics and Life Writing,” implies a very broad scope, but my primary concern was with subjects vulnerable to exploitation or misrepresentation by virtue of their being ill or disabled and sometimes, as a result, not able to represent themselves. In Vulnerable Subjects, I sought to adapt to the practice of life writing an approach to biomedical ethics known as Principlism, set forth in a classic text, Principles of Biomedical Ethics, by Tom Beauchamp and James Childress. I was concerned, then, primarily with biographical life writing: texts whose subjects’ are rendered vulnerable by their relation to those who write about them. One category of such individuals is disabled children, frequent subjects of parental narratives. Another category is located at the other end of life: aged and demented parents, whose predicament is the focus of a fast-growing niche narrative, the Alzheimer’s memoir, typically written by a child who has served as a carer. Here we see a common linkage among healthcare, authorship, and authority; the writer claims authority on the basis of caregiving. This is an obvious and legitimate basis of authority, but it is not without problems. According to my approach to ethics, just as physicians are charged with not harming their patients, life writers should be concerned not to harm their subjects. And just as physicians are obliged to honor their patients’ autonomy, life writers should honor their subjects’ autonomy, involving them in the process to the greatest extent possible. And just as physicians are urged to be open with patients, so life writers should be transparent about their methods, processes, and personal benefits. In Vulnerable Subjects I spent a good deal of space surveying the oeuvre—already quite considerable—of Oliver Sacks, offering a mild critique of his writing, which is rarely informed by the insights of disability studies. I also examined what I call “death-writing”—euthanasia narratives, which typically justify it on the grounds of poor quality of life. And I branched out from such obvious scenarios to the way we all may be “written” by our DNA, which can reveal potentially harmful and costly genetic anomalies. To date, most of us are not compelled to submit our DNA to anyone, but it can be easily accessed without our permission or even our knowledge. In that sense, we are all vulnerable subjects. Perhaps keeping that in mind will help us respect the autonomy of those who are rendered especially so by dint of the anomalous condition of their bodies and minds. What I want to offer today, then, are some thoughts about dangers inherent in writing about illness and disability. What may compromise it? When and how might it backfire?

Vulnerable Subjects  141 Consider the following narrative about a case study. When I was speaking at an American university on an unrelated topic a couple of years ago, a graduate student I’ll call Julia approached me with her story. At the age of seven, Julia was operated on for a significant physical anomaly that required ongoing medical attention. To help her cope with this regimen, she was sent to a therapist. Nearly two decades later, learning that the therapist had been appointed to a prestigious academic post, Julia looked her up online, out of curiosity. The therapist’s résumé listed an article Julia thought might be about her. Reading it confirmed her suspicion. And she found it deeply unsettling. This anecdote illustrates, for starters, how the internet has shrunk our world. We all have less privacy than we used to, and it is ever easier to trace others and references to ourselves. Scenarios such as Julia’s, however, do not require the internet: in 2001 a psychotherapy patient queried the New York Times ethics columnist after discovering what he believed to be his case narrative while randomly browsing in a bookstore. These stories reveal that even when authors of case studies may think they have concealed the identity of their patients, there is no guarantee that patients will not recognize themselves should they happen upon their own narratives. And this recognition is very likely to cause them discomfort. These therapists presumably thought they had done everything required by professional ethics. Perhaps they had. Julia was far too young to grant consent; rather than seeking it from her parents, the therapist concealed her identity behind a pseudonym. And Julia’s youth may have led her therapist to discount the likelihood of her reading the article. But against all odds, she did, and she readily recognized it as her case. And she felt somehow violated. The adoption of narrative medicine may increase the likelihood of scenarios like this. With a narrative approach—which, according to Rita Charon, elicits “accounts of self . . . that include emotional, familial, aspirational, creative aspects of the self”—a physician’s relation to her patients moves closer to that of a psychotherapist. As I said earlier, this may serve the patients’ interests; that is the aim (and claim) of narrative medicine. But greater knowledge of patients’ lives also facilitates and encourages the writing of case studies that are more likely to result in self-recognition. Indeed, at the 2011 MLA convention, Charon herself noted the danger inherent in narrative medicine. Her title—“Listening, Telling, Suffering, and Carrying On: Reflexive Practice or Health Imperialism?”—indicates the prospect that, rather than empowering patients, this approach may only extend the power of clinicians. It may also increase the risk of what I call “deferred iatrogenic pain”—suffering inflicted on patients not by their treatment but by the narratives of that treatment. The point is that ethical guidelines do not guarantee that case histories may not cause pain to their subjects. Such pain may not rise to the level of

142  Vulnerable Subjects manifest “harm,” and thus the clinicians may not have violated the precept to do no harm. But in Julia’s case, the pain was far from negligible, despite being long delayed. More to the point, it may have been avoidable. Or maybe not: it may not always be possible to conceal patients’ identities from them. The rarer the case, the more publishable it is. And the very details that warrant writing it up may enable patients to recognize themselves. In any event, among the potential readers of case studies, patients are uniquely equipped to know all the identifying details and, of course, who provided treatment. They may resent the presumption of authorship. Even if their rights have not been violated, the question is whether their discomfort is outweighed by the benefits of the narrative. The question then becomes, cui bono? To whose benefit? Presumably, the goal of writing case histories is to advance the understanding of particular conditions and improve their treatment. In principle, the case history serves the welfare of all—the public health. At the same time, there are undeniable benefits to the author in committing a case to print. Doing so can build a reputation and advance a career—and lead to monetary gain. Consider Oliver Sacks, the world’s most famous neurologist, whose fame and fortune are based not on his clinical practice or original contributions to neurology but on his nonclinical case studies of unusual syndromes. The writing of case studies may entail a conflict of interest: authors stand to gain from them in a way that is not true for their subjects. This may affect their judgment of the medical benefits of such projects. So medical professionals are not in the best position to judge the ethics of writing up a case. I cannot speak for Julia; indeed, she herself is not sure just why she was so troubled by reading her case. But my sense is that a patient’s discomfort may be a function of the intrinsic disparity between the patient’s and the clinician’s relations to a case. The patient comes to the clinician in hope of help—of care, if not of cure. To the professional, however, the patient represents an instance of something beyond herself, perhaps a disease or impairment in which the professional has an intellectual interest, or even a research program. The hurt caused by a patient’s self-recognition may arise from the feeling that one has been reduced to one’s condition and thereby objectified. What disappoints and offends a patient who reads her own case narrative, then, may be the discovery that she is not just a person, or even a patient, but also a case—indeed, a case of—to her therapist or physician. The psychotherapist Ruthellen Josselson has acknowledged this. Confronted with negative reactions by her patients to their case histories, she came to this realization: I [had], in a sense, been talking about them behind their backs and doing so publicly. Where in the interview I had been responsive to

Vulnerable Subjects  143 them, now I [was] using their lives in the service of something else, for my own purposes, to show something to others. I am guilty about being an intruder and then, to some extent, a betrayer. (4) Thus, the patient who reads her own case may make the uncomfortable discovery that, in the therapeutic relationship, her well-being was not an end in itself—or at least, not the only end: she has also been a means to an end. Whether she values that end may depend on what she takes it to be. If she sees her case as being used to advance knowledge of her condition, she may decide her discomfort is justified. If she sees the end as careerist, she may not. I would advise those who write about illness and disability, then, to err on the side of caution. It may not be enough to take the precaution of concealing a patient’s identity—or obtaining consent. The patient who gives consent may have no idea what it will be like to come upon her story in alien discourse. It may be advisable to assume that one’s patient will in fact read the narrative of her case and recognize it as her own. And to write accordingly, if one writes. And not to write, if one imagines it will cause undue discomfort. As it happens, that story has an instructive kicker, as we say in the U.S. With Julia’s permission, I cited her story in an op-ed in Virtual Mentor, the online ethics journal of the American Medical Association; I called my essay “The Case History and Deferred Pain.” Not long ago, Julia wrote to me to say that she now felt ready to write about her situation. Could she see what I had written? I thought I had sent her my op-ed when it was published. Apparently, I had not. I sent it to her, and she replied (in part) as follows: I think that [your] article captures that invalidation of my feelings rather perfectly, but not in a way that is self-aware. In other words, [your] article unconsciously replicates the same single focus on an external goal, and lack of attention to internal processes and family dynamics, that I felt during the therapeutic process. (personal communication) I’m not entirely sure what she means about “internal processes and family dynamics,” since, unlike her therapist, I was not privy to those nor to any of the details of her case. In fact, I don’t even know what her original condition was. But in writing my piece, I was uncomfortably aware that I, too, was treating it as a kind of case and putting it to my purposes. I saw no way around that, and I don’t regret what I did with it. But I understand how Julia may feel I somehow reenacted her therapist’s appropriation of her experience. My point is that writers cannot always foresee how far their words will travel and how they may return to haunt them.

144  Vulnerable Subjects In writing Vulnerable Subjects, it occurred to me that the various “principles of biomedical ethics” might be boiled down to one precept, known in the Judeo-Christian tradition as the Golden Rule: do unto others as you would have others do unto you. That seems unobjectionable. But it’s not. The trouble with the Golden Rule is that it encourages a very dangerous ethical practice: assuming one knows what the other wants. Not only do individuals vary in what they want, but desires may be inflected by gender, race, ethnicity, and other cultural attributes. This is one reason that diversity in the medical profession is so desirable. No longer is healthcare a function of white males in white coats. But it may be that the bias hardest to overcome in medicine—and in the writing about illness—is that against illness itself. Wait, what? Why call this a bias? you may say. Isn’t the point of medicine to heal the sick? Shouldn’t physicians be “against illness”? In a sense, yes, of course. This preference—to name it more neutrally— is inherent in medical practice, and rightly so. At the same time, it is increasingly obvious, to those paying attention, that medicine operates within, rather than outside, cultural contexts. Much of the time, medicine’s constructs work well enough. But medicine often encodes, and thus reinforces, common prejudices against certain kinds of bodies. Good evidence of this, if we needed it, appeared in a recent TED talk by Dr. Peter Attia, who, according to a New York Times story, admitted to something he believes many doctors may in fact be guilty of. That compassion for overweight and obese patients often is not quite as deep as it is for those who are sick for other reasons—the “unlucky” ones, for instance, who develop cancer or another disease through no apparent fault of their own. (O’Connor) Many viewers were moved by his apology to a diabetic patient he admitted blaming for her condition. (I would be more impressed by his apology had it not been prompted by Dr. Attia’s being diagnosed with diabetes despite what he considered a very healthy lifestyle.) The larger point here has been a theme of my work beginning with Recovering Bodies: Illness, Disability, and Life Writing: certain somatic conditions carry stigmatizing narratives. In my lifetime the most obvious example of this is, of course, HIV/AIDS. Initially, HIV/AIDS was considered a death sentence, and the AIDS narrative implied that many patients deserved their sickness and their death. Hence the distinction between “innocent” and not-so-innocent victims, depending on how the virus was acquired. This stigma has been greatly diminished—fortunately, but not fortuitously. One factor was drug therapies that have made HIV/AIDS a survivable chronic condition. This changes the narrative and reduces fear and stigma. But those advances were impelled in part by gay activists:

Vulnerable Subjects  145 such is the interplay among culture, politics, and science. My point may be fairly obvious, but let me restate it: many illness and disability narratives are pre-inscribed by culture. Attentive writers—and readers—need to be aware, and to be wary, of these preexisting scripts, which have great power and inertia. Hitherto, I have been using the terms illness and disability in tandem. Now, having raised the question of a medical preference for health, I want to distinguish disability from illness. Admittedly, in practice the two often overlap; they often coexist in the same bodies. Indeed, illness and disability have reciprocal relations: each may cause the other. Moreover, for legal purposes, many “physical” illnesses—like HIV/AIDS, cancer, and diabetes—and “mental” illnesses—like schizophrenia and bipolar syndrome—count as disabilities. Thus, while illness and disability are conceptually distinct, the ill and the disabled are not distinct populations, and the line between disability and illness is not always clear. But while it is very difficult to draw a sharp line between them—or even to articulate the difference—there is a distinction, and it matters. It matters in part because the all-too-common conflation of disability with illness necessarily engages the medical paradigm (with its preference for “health” and wholeness). This paradigm “hails,” or interpellates, disabled people as sick and defective; it constructs their conditions as requiring medical intervention, which is not always helpful or desired. This conflation tends to pathologize disability, willy-nilly. It may project a desire for cure where it does not exist. A related danger of conflating disability with illness lies in undervaluing the lives of disabled people. Numerous studies have established that people with significant disabilities rate their own quality of life nearly as high as that of nondisabled people. Many disabled people are surprisingly well adjusted to their conditions, especially if their impairments are congenital or acquired early. In contrast, nondisabled people, especially those who are medical professionals, typically estimate the quality of life of disabled people as quite poor. Here, I think, we can begin to see the danger of the medical bias in favor of health. Disabled people do not share, cannot understand, and are justifiably offended by the attitude of nondisabled people that their lives may be of poor quality—or even not worth living. So there is always a danger in writing about someone’s disability that the writer will project onto a subject his or her own imagined response to being in that condition. The Golden Rule falls short. The New York Times Magazine recently ran a cover article (Henig) about an English professor, Brooke Hopkins, who became a high quadriplegic as a result of a terrible bicycle accident. The story’s hook was that he was married to a prominent bioethicist, Margaret Pabst Battin, who had long been an advocate of assisted suicide: now her beloved husband was an apparent candidate for that final solution. I always dread reading these stories, as they generally conclude that, for the severely disabled,

146  Vulnerable Subjects suicide is justified. This article reserved judgment; Hopkins was still alive and apparently holding his own when it was written. (He has since died.) I was heartened, however, by his testimony that he loved his life—mostly (not every day)—and that “You never know what you can get used to.” Developments in the relatively new field of psychology called hedonics—the study of what pleases us—lend the authority of behavioral science to disabled people’s reports of their quality of life. Medical professionals should respect these reports—whether they agree with them or not—and to treat disabled people accordingly. Life writers should heed them as well. According to hedonics, successful adaptation to a new and negative condition, such as an acquired impairment, is possible only within a limited time frame and depends on acceptance of the permanence of that condition (Amundson 16). Thus, if one holds out unrealistic hope of recovery—as newly disabled people are often encouraged to do—one’s quality of life may be permanently compromised. This suggests that stories of overcoming disability serve the needs of the nondisabled population, rather than those of the disabled population. Again, writers need to be wary. So do readers. The thrust of my talk today may seem rather negative. It certainly has been primarily cautionary, a series of caveats. Let me repeat them here. Be wary of the hurt your story can cause if it is consumed by the subject, even years in the future. Be wary of violating the privacy of your subject. Be wary of appropriating a subject’s story for purposes the subject may not share. Be wary of projecting onto an ill or disabled subject the emotions you think you would feel in their situation; that is, be wary of identification. Be wary of conflating illness and disability. I realized in advance that I might well come across as a wet blanket, speaking last at the end of the conference. Obviously, I have been willing to run that risk. But let me close with a different slant, drawn from my own life and life writing. I was initially drawn into the field of disability studies by the proliferation of memoirs by and about people with anomalous bodies. I was not consciously impelled by any personal experience. Had you asked me twenty years ago, I would have said that neither I nor any member of my immediate family was disabled. But I see now that in fact my family was riddled with disability; I just hadn’t thought of it as such. I’ll spare you the details except for this: my father died of depression—by way of self-medication with alcohol. And for the last five years or so, I have been working on a memoir of him—an entirely unanticipated culmination of years of working in the fields of life writing studies and disability studies. The memoir was provoked mainly by personal documents I found in my father’s closet that revealed dimensions of his premarital life of which I knew very little, and which I found fascinating. For example, several chapters reconstruct early

Vulnerable Subjects  147 romantic relationships—with men as well as women—from correspondence. To complete the narrative, however, I felt I needed to tell the sad story of my father’s final years. To that end, I requested his medical records from McLean Hospital in Belmont, Massachusetts, where he had been treated. (Yes, that is the hospital where Susannah Kaysen spent 18 months, the basis of her memoir Girl, Interrupted.) After filing all the requisite forms, I received a batch of documents more than an inch thick. Much of this consisted of graphs of his electroshock therapy. These pages were of course totally inscrutable, entirely useless to me. More promising were the written observations by healthcare workers—social workers, nurses, and physicians. For over four months in his mid-sixties, my father received the very best inpatient care that medicine could provide and that money could buy at the time. Alas, there was no discernible improvement in his condition, and a year after his discharge, he died. What I learned from perusing his records several times is something I should perhaps have known all along: the answer as to why my bright, accomplished, vigorous father should succumb to a devastating depression in his early sixties was not to be found in his medical records. Indeed, the psychiatrist who referred him to McLean admitted he found no precipitating events. Nor did those who treated him while he was there. I like to think that, using the documents and records available to me, and my personal knowledge of him, I have come to a better understanding of his late-life depression than his carers did. I did this by paying careful and sustained attention to the whole of his life course, with the benefit of documents not available to his physicians. Obviously, in doing so, I have been writing about a vulnerable subject. Doing so, I see the ethics of this from a new perspective. The end of my father’s life involved some very messy scenes. There is no question that he would not want these stories told. So I am somewhat perplexed about how much of the mess is fair to include. There’s a vivid scene in Philip Roth’s Patrimony in which he describes—contrary to a promise to his father—cleaning up after his father had an episode of explosive diarrhea—shit everywhere. I sympathize with Roth’s predicament: I’ve witnessed some awful messes myself, and I feel they are part of my story, too; mine to share. So I sometimes question my own pronouncements about the ethics of life writing. Or at least, I recognize how easy it was to render them from a critic’s, rather than a writer’s, perspective. The pen is in my other hand, now. Toward the end of the multi-year process of writing this narrative—a process that was both painful and therapeutic for me—I had a brainstorm. For a number of reasons, it occurred to me that it might be appropriate to cast my entire memoir as a long letter to my father—to address it to him explicitly, referring to him in the second, rather than the third, person. So I rewrote the manuscript accordingly. I have since abandoned this

148  Vulnerable Subjects approach. But writing the memoir in the second person was an edifying experience. For one thing, it gave me the sensation of being in a new and direct relationship with my dear, dead dad. It thus endowed the memoir with a degree of intimacy earlier drafts lacked. The second-person address also helped me gauge what I was doing insofar as it made me acknowledge, to my father’s face, as it were, just what I was revealing about him to anonymous readers. It feels different to address your narrative to your vulnerable subject. It’s a good “reality check,” which may cause you, the author, to change your tone or even your content. I recommend this strategy to anyone writing about a vulnerable subject. Don’t put yourself in their position; try telling their story to them. It may help you question your own authority.

Works Cited Amundson, Ron. “Quality of Life, Disability, and Hedonic Psychology.” Journal for the Theory of Social Behaviour 40(4), December 2010): 374–392. (My page numbers refer to the pdf copy available at this website: http://www.uhh. hawaii.edu/~ronald/pubs/2010-Hedonics.pdf.) Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics, 5th ed. New York: Oxford University Press, 2001. Print. Charon, Rita. “Listening, Telling, Suffering, and Carrying On: Reflexive Practice or Health Imperialism?” Narrating Illness and Disability: Risks and Rewards, MLA Annual Convention, Los Angeles, 7 January 2011. Clark, Hilary. Depression and Narrative: Telling the Dark. Albany: SUNY Press, 2008. Print. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Print. Couser, G. Thomas. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press, 2003. Print. Couser, G. Thomas. “The Case History and Deferred Pain.” Virtual Mentor, 13 July 2011, 503–506. http://virtualmentor.ama-assn.org/site/current.html Henig, Robin Marantz. “A Life-or-Death Situation.” New York Times Magazine, 17 July 2013. Print. Josselson, Ruth. “On Writing Other People’s Lives: Self-Analytic Reflections of a Narrative Researcher.” Ed. Josselson, Ethics and Process in the Narrative Study of Lives. Thousand Oaks: Sage, 1996, 60–71. Print. O’Connor, Anahad. “Blaming the Patient, Then Asking Forgiveness.” New York Times, 12 July 2013. http://well.blogs.nytimes.com/2013/07/12/ blaming-the-patient-then-asking-forgiveness/?ref=health

11 The Shape of Death in American Autobiography*

Birth, the beginning of life, offers a convenient starting point for an autobiography, but death is necessarily unavailable as a conclusion. Barring unusual circumstances or a suicidal act, the narrative is unlikely to end simultaneously with the writer’s life; barring some sort of miracle, the narrative cannot include an account of the writer’s death. Of all the significant events of a person’s life, then, his own death would seem to be unique in lying beyond the scope of autobiography. Yet many classic American autobiographies betray the pressure of a profound concern with death. The expectation of death may impel the writer, as though the composition of an autobiography might help him to compose himself in the face of death. Or he may hope that the finished narrative will endow him with a kind of immortality. More importantly, the form and content of the narratives are often significantly shaped by the writer’s preoccupation with death, even though the event itself eludes direct treatment. Two problems overlap here in an interesting way. As a mortal, the writer may seek to come to terms with death. As an autobiographer, he may want to write a conclusion which, in its finality and significance, will somehow be equivalent to his own death. A surprising number of our major autobiographers anticipate or offer a substitute for their own deaths; some even point beyond it, offering intimations of their own immortality. Each solution is original and reflects the autobiographer’s vision of life as well as his conception of death. A concern for death and immortality pervades Puritan spiritual autobiography, for its composition was ultimately a devotional act which served as preparation for death. The saint could not claim absolute certainty about his status and hence about the fate of his soul after death. Nor could he conceive of himself as achieving personal immortality by writing an autobiography, any more than he could imagine himself earning grace. Nevertheless, since his spiritual autobiography was often intended as a parental model for his children after his death, his narrative stressed the positive. While * This essay was originally published in the Hudson Review 31(1), Spring 1978: 53–66.

150  The Shape of Death in American Autobiography his diary served as a medium for ongoing self-examination and characteristically expressed uncertainty and anguish, his full life narrative provided an opportunity to assemble and review the evidence of divine favoritism toward him. Jonathan Edwards deviated somewhat from the norm by omitting any reference to posterity and by focusing on saving rather than common grace. Thus, as evidence of his election, he cited his intense inner experience of grace itself rather than examples of providential interference in his life. His variation on the Puritan practice resulted in an especially pure expression of the essence of Puritan piety concerning death and immortality. For Edwards, conversion was like conception; it was not the climax of a sequence of preparatory stages but a mysterious, nearly imperceptible transformation which initiated a gradual growth in grace. One manifestation of this change was a “calm sweet abstraction of the soul from all the concerns of the world” (84). The narrative conveys this by veering repeatedly from a specific time and place to a timeless sensation of mystical rapture. Instead of portraying himself as an active servant of God in history, Edwards shows himself being drawn passively from the world to God, from the temporal to the eternal—a progression which points toward the ultimate mystical union with God after death. This progress was not without apparent reversals, however, for Edwards’ new sense of himself was a paradoxical one which made for an unstable emotional life. Even if the self could be completed and perfected in God, it was still corrupt and worthless in itself. The wish to be “swallowed up in God” (84) invoked the obverse side of Calvinist self-consciousness—the need to be “emptied and annihilated” (93). Edwards’ suggestion that true self-fulfillment comes only through the annihilation of individuality is simply an expression of a paradox of Puritan piety; Edwards accepted this paradox and seemed to welcome the progressive loss of selfhood which growth in grace entailed. Far from fearing self-annihilation, Edwards seems to rush eagerly toward it in his Personal Narrative. To a modern reader, the narrative may seem to betray a strong death-wish, but in Puritan terms it simply expresses an unusually intense yearning for complete sanctification. In any event, the structural principle of growth in grace points toward the resolution of the paradoxes of Edwards’ piety beyond death, and his description of moments of mystical absorption conveys his sense of what death must be like. Sanctification and death lay beyond autobiography, of course, but his narrative clearly anticipates events it could not include. In form and content, it is oriented toward an ultimate and ineffable experience. Quaker spiritual autobiography in general is concerned less with the matter of election than with the problem of enacting divine truth in a sometimes hostile world. Thus, John Woolman’s Journal, the Quaker classic which corresponds to Edwards’ Personal Narrative, is characterized by an acutely conscientious involvement in the world rather than a mystical abstraction from it. Still, like any spiritual autobiographer, Woolman was concerned with spiritual crises, like conversion, which

The Shape of Death in American Autobiography  151 were analogous to death and rebirth and with the lifelong process of selfsubmission to the divine impulse. Woolman’s growth in grace takes the form of the progressive refinement of the essential Quaker testimonies of simplicity, equality, peace, and community. This process involved him in a deepening identification with the brotherhood of man rather than an exclusive intimacy with God. The last and most dramatic of his visions, which occurred during a severe illness, epitomizes this process and reflects the way in which his Quakerly consciousness dealt with the prospect of self-annihilation: I was brought so near the gates of death that I forgot my name. Being thus desirous to know who I was, I saw a mass of matter of gloomy colour between the South and the East, and was informed that the mass was human beings in as great misery as they could be and live and that I was mixed in with them and henceforth might not consider myself as a distinct or separate being. I then heard a soft, melodious voice, . . . and I believed it was the voice of an angel who spake to other angels. The words were, “John Woolman is dead.” (185) This vision can be interpreted in several ways—as a confirmation of Woolman’s conversion, which involved a sense of the death of his will; as a mystical intuition of the oneness of humanity; and as an anticipation of his death. Significantly, his vision suggests that his sanctification is contingent on his acceptance of his involvement with the mass of sinful and suffering humanity. The way to God is not out of the temporal world, as it was for Edwards, but through identification with his fellow man. Like Edwards, however, Woolman does tend to prophesy his death and to envision his eventual union with God. Such a vision would have made an appropriate conclusion to the narrative, but the Journal does not end with that passage. Rather, it ends in various ways in different editions. Each is fitting in its own fashion, but two in particular reflect the impulse to complete an autobiographical narrative with a reference to death. In the most authoritative edition, the final passage consists of Woolman’s account of a friend’s death. After describing his deathbed vision of the evil of slavery, Woolman wrote: “He appeared calm . . . , death in about one hour appeared evidently upon him, and I believe about five hours from my going in he quietly breathed his last; and as I believe he left no more memorandum in writing of that dream or vision of the night, at this time I believe it seasonable for me to do it” (192). Here, by substituting this Friend’s exemplary death for his own, Woolman gives his conclusion an effective finality and achieves, as an autobiographer, a last example of the kind of selfless act the Journal was intended to encourage.

152  The Shape of Death in American Autobiography In another edition, the supposedly impossible happens: the narrative ends with an account of Woolman’s death. This was achieved not by a miraculous agency but rather through a kind of communal ghostwriting: the Quaker editorial committee decided to conclude their edition of the Journal with an account of Woolman’s final illness and death in England written by the Friends who had attended him (Appendix H, 301–306). Although this addition cannot be considered part of the text itself, it is an appropriate conclusion to a narrative that focuses on communal concerns. Furthermore, it is faithful to the impulse, if not to the text, of the most authoritative edition, for the English Friends simply did for Woolman what he had done for another Friend. In the Autobiography of Benjamin Franklin, a contemporary of both Edwards and Woolman, we encounter a resolutely secular mind which treats death and immortality very differently. The context of the autobiography is no longer an orthodox faith; rather, it is a mature deism—a “natural religion” organized around the most useful tenets of the many religions with which Franklin was familiar. Part of this personal religion was a belief in an afterlife in which the individual would be treated according to his conduct on earth. However, Franklin seemed more confident of the social utility of this belief than of its truth. He was by nature skeptical, and while he was willing to believe in a system of posthumous rewards and punishments, he would have preferred to have empirical verification of it. Thus, in apparent earnestness, he made an agreement with a friend that the first of them to die should visit the other and “acquaint him how he found things in that Separate state” (52). Franklin’s deism went far toward lodging will, initiative, and responsibility with man rather than God. The implications of such a religion for the autobiographical treatment of death and immortality are best approached through a consideration of his conception of his autobiography as a revised edition of his life. As a young man, he had composed an epitaph for himself employing a similar metaphor: “The Body of B. Franklin. Printer; Like the Cover of an Old Book, Its contents torn out, And stript of its Lettering and Gilding, Lies here, Food for Worms, But the Work shall not be wholly Lost: For it will, as he believ’d, appear once more, In a new and more perfect Edition, Corrected and amended by the Author” (Labaree 44n). Except for his confidence in his own sanctification, there is little here to alarm an orthodox Calvinist, and much of the wit would have pleased a Puritan elegist. However, the ruling metaphor in the opening passage of the autobiography has radically different implications. For in playfully begging the advantage, in writing his autobiography, that “Authors have in a second edition to correct some Faults of the First” (16), Franklin assumes the role he previously assigned to God, and the book takes the place of the immortal soul as the revised edition of the man’s life. For the traditional spiritual autobiographer, God was ultimately the Author of the autobiography even as he was the

The Shape of Death in American Autobiography  153 Creator of the saint; here, Franklin boldly claims full responsibility for his autobiography and by implication for his life. Thus, while Franklin seems to retain a fairly conventional notion of the afterlife, his conception of autobiography is a novel one which implies that the autobiographer can create or guarantee a kind of immortality for himself. Having lived, as he believed, a life of social utility, Franklin sought to extend his usefulness beyond death by creating an autobiographical model worthy of imitation. Instead of anxiously scanning his experience for evidence of his election, he confidently nominated himself for immortality. This notion of autobiography as self-preservation derived from Franklin’s exploitation of the latitude allowed him by his deism. In writing his autobiography, then, Franklin was not rehearsing for death in the manner of Edwards and Woolman; rather, he was replaying and recreating his life. Although his method was sometimes analytical and always didactic, he did not allow his great vitality or his sense of his value and consequence as an individual to be obscured. Indeed, more than it is a story of success or upward mobility, his autobiography is the story of the steady extension of his sphere of influence. Yet, ironically, as the power of the autobiographical character increased, the power of the narrator diminished: toward the end of the narrative, the writing becomes dull and drained of wit and individuality. The result is as though Franklin had sacrificed the personal dimension of his life when he took his place on the public stage. Because of age and infirmity, Franklin fell far short of bringing his narrative up to date, but once his interests and those of the restless colonies had become identical, autobiography became history and there was no need for Franklin to continue his story. While the narrative trails off inconclusively, the effect is sufficiently final. Having identified himself not merely as a public servant but as the representative of the American colonies, Franklin disappeared into history. Thoreau and Whitman both felt very acutely the pressure of time’s inexorable passage to death. However, their Transcendentalism offered at least a partial solution to this problem, for it suggested that they could somehow live above time and individual identity. While Walden and Cape Cod, “Song of Myself” and Specimen Days, are not conventional autobiographies, they can be read as Transcendentalist versions of the spiritual autobiography or as installments in ongoing autobiographical narratives. These works vary significantly in their treatment of death, but they share a strong impulse to defy it. Walden is the story of Thoreau’s attempt to escape the spiritual death suffered by most Americans by seeking union with a divine spirit. Essentially, his strategy was to step out of society and history to immerse himself in Nature. In this endeavor, he discovered a solution to an autobiographical problem as well, for by substituting the cycle of the seasons for historical time in Walden, Thoreau arrived at a structural device which both marks the passage of time and suggests

154  The Shape of Death in American Autobiography his transcendence of it. Because it is the season which most threatens living creatures, winter stands for death, but Thoreau takes advantage of the forced asceticism of winter life to achieve a richer spiritual life. Then, having identified himself with the pond, Thoreau, too, comes alive again when the ice goes out. Thus, the cycle ends with the season of rebirth and redemption—a conclusion which provides an ecstatic climax. Equally important, the seamlessness of the cycle, which is not only selfrenewing but endlessly repeatable, enables the narrative to suggest all the transcendent possibilities of life even as it achieves a sense of an ending rare in autobiography. While Walden warned against death by suffocation in civilization, Cape Cod seems more concerned with death by drowning in the ocean. To Thoreau, Cape Cod was another country—not a pastoral inland landscape but a barren and forbidding seascape. There he confronted a violent and impersonal environment which challenged man’s ability to adapt and survive. His narrative opens with a scene of shipwreck, where Thoreau’s attention focuses on “the livid, swollen, and mangled body of a drowned girl, . . . the coiled-up wreck of a human hulk” (6–7). This corpse epitomizes the ocean’s death-dealing power, its ability to destroy humans and their fragile constructs—whether physical, like the brig, or intellectual, like Thoreau’s faith in Nature’s harmony and benevolence. Thoreau’s travels on Cape Cod seem to have constituted a kind of temptation in the wilderness, and Cape Cod takes the form of a pilgrimage in which Thoreau seeks to temper and reaffirm his Transcendentalism. The first chapter is filled with false starts, including a pious assertion that sympathy for the shipwrecked Irish immigrants is unnecessary because they have simply “emigrated to a newer world” (12). This resolution of the problem is unsatisfactory because it depends on supernatural compensation for a natural disaster; it “solves” the problem at the cost of heretically separating God from Nature. A truly Transcendental resolution is not achieved easily or early; Thoreau reaffirms his faith only after a painstaking process of acclimating himself to an environment which confounds all his preconceptions. In his investigation of the landscape, Thoreau makes two saving discoveries. First, he learns to recognize the processes of compensation at work within Nature to maintain a dynamic vital equilibrium. The ocean is a creator as well as a destroyer of life. Erosion in one place means the extension of land elsewhere, as at Hog Island, where the “wrecks of isles were being faithfully arranged into new shores” (15). Secondly, he discovers the possibilities of human accommodation to the landscape. If shipwreck and death are facts of life on the Cape, so are salvage and survival, for where there are wrecks there are “wreckers”—ingenious natives who salvage usefulness from disaster. A lighthouse becomes a symbol of salvation and stability in a world of flux, and the keeper, who struggles “to keep his light shining before men” (170), a model of an indigenous faith.

The Shape of Death in American Autobiography  155 The affirmative climax of the narrative comes with Thoreau’s discovery of a successful communal project to prevent Princetown from being inundated by the sandy tide of the dunes. The natives’ strategy was simple: they used beach grass to anchor sand hills which in turn held back the dunes. Though the anchor cables were slender, they were strong, and Thoreau chose to believe in their tenacity. Here Thoreau found redeeming evidence of Nature’s readiness to cooperate with man, and this example of human resourcefulness allowed him to reaffirm his faith in man and Nature. There is no mention here of transcendence or universal redemption; Thoreau had come a long way from the confident conclusion of Walden. Death remained an incontrovertible fact; immortality, a distant hope. But Thoreau’s affirmation, however tentative, however long in coming, indicated that he had learned to live not only in proximity but in peace with death. Even more than Thoreau, Whitman was plagued by insecurity and anxiety. In compensation, a sense of transcendence and a hope of immortality pervade his poetry. “Song of Myself” is even further from conventional autobiography than Walden and Cape Cod, but it is so because Whitman took Emersonian ideas about the self even more literally than Thoreau and because Whitman was bolder in creating formal equivalents for those beliefs. After all, the poem purports to be a representation of an actual mystical experience, and while there is no hard external evidence that Whitman had such an experience, the poem itself is compelling testimony. If we think of the poem, which recounts a kind of conversion experience and its consequences, as a kind of Transcendentalist spiritual autobiography, we can see how it was shaped by Whitman’s concern with death. For Whitman’s vision carried him not only out of history but out of time altogether. The poem begins as a retrospective narrative, but the mystical experience of section 5 annihilates the past and initiates a present timeless existence. Henceforth, the loose associational structure and the constant flow of present participles express Whitman’s confidence in his transcendence of time and mortality. Whitman replaces literal chronology with a loose, symbolic chronology—from the conception of the poet in the sexual imagery of the mystical experience, to his gestation, birth, death, and rebirth. Even this symbolic progression is implied only to be disrupted by Whitman’s compression and expansion of normal temporal sequences. Now he projects himself backward beyond birth to identify with the entire process evolution; now he propels himself forward beyond death with the promise to wait and welcome the reader to eternity. Taking advantage of his visionary medium, Whitman includes an account of his own death (described as though he willed it): “I effuse my flesh in eddies and drift it in lazy jags./ I bequeath myself to the dirt to grow from the grass I love” (Section 52, ll. 8–9). The ultimate effect is paradoxical, that of an autobiography written in the present tense, one which conveys not

156  The Shape of Death in American Autobiography only Whitman’s confidence in his eventual triumph over death but also a sense of immediate victory over time itself. Specimen Days, which is closer to conventional autobiography in its use of prose and its chronological structure, was written partly for the purpose of simple self-preservation, as Whitman admitted. But linked to this motive was a desire to verify the existence of the self he had envisioned in “Song of Myself.” So the major thrust of the narrative is to capture, in the medium of prose non-fiction, the timeless existence of Whitman’s transcendent self. Only the first section is written retrospectively; after that Whitman presents the reader with a succession of concrete and immediate impressions of the Civil War, of Nature, and of the American landscape. In his attempt to document the ineffable, Whitman intuitively arrived at a technique which both grounds his existence in history and hints at his transcendence of time: the spontaneously jotted notes are all dated, but they are written in the present tense. The effect is of a past preserved as a continuous present, an “eternal now.” The succession of present instants, and the style, with its seemingly endless sentences and its proliferation of present participles, convey a sense not of growth in chronological sequence but of the ability to live deeply in the moment. Whitman witnessed much death and suffering during the Civil War, but his role as a nurse and his identification with the quasi-divine cause of “Unionism” helped him to maintain a sense of equilibrium. Later, like Thoreau, he retreated from history and its wounds into Nature in search of health. Finally on July 22, 1878, his efforts at self-regeneration succeeded, and he was rewarded with a renewed sense of transcendence and a promise of immortality: “As if for the first time, indeed, creation noiselessly sank into and through me its placid and untellable lesson . . . the visible suggestion of God in space and time” (174). Realizing perhaps that in “Song of Myself” his vision of triumph over death had carried him beyond the limits of autobiography, in Specimen Days Whitman created an autobiography which managed to express, using somewhat more conventional forms, the same Transcendentalist vision of the self. As an autobiographer, Henry Adams professed to be somewhat intimidated by the failure of other autobiographers to create self-images which were at once accurate and heroic. Indeed, the apparent impossibility of the task led Adams to think of the writing of autobiography as the literary equivalent of suicide. However, this did not mean that he was entirely opposed to it. Possibly, through some unconscious process, his literary suicide may have helped to relieve the emotional burden of the actual suicide of his wife—an event conspicuous by its omission from his autobiography. More consciously, he urged the writing of autobiography on friends as the only alternative to leaving the task to biographers, whom he regarded as literary assassins. Thus, far from being an act of despair and self-destruction, the composition of an autobiography represented, for Adams, a gesture of self-protection and self-assertion. Certainly,

The Shape of Death in American Autobiography  157 Adams committed his own literary suicide with great verve and supreme skill. With the simple gesture of adopting the third person point of view, Adams was able to treat himself as a biographer might—as though his life had ended. By characterizing himself as a failure, he could forestall criticism of his egotism while implicitly indicting a social system which excluded such a talented man from power. Thus, his pervasive irony is perhaps more self-serving than self-deprecatory. Clearly, the composition of the Education of Henry Adams was a complex and highly charged act, and Adams may have found his greatest satisfaction and self-fulfillment in his literary self-annihilation. In the narrative, Adams’ most direct confrontation with death comes with his sister’s premature and painful death from lockjaw. This incident probably acquired additional significance in the narrative from the fact that it served as an outlet for his unexpressed grief for the loss of his wife. At any rate, it had on Adams the effect the shipwreck had on Thoreau: it shocked him into a recognition that death could threaten his entire system of belief as well as his emotional stability. This event obliterated any vestige in him of a belief in a personal God. Furthermore, his witnessing of his sister’s suffering brought into sharp focus his vision of nature as “a chaos of anarchic and purposeless forces” (289)—an intuition he was to grapple with for the rest of his life. Like Adams’ point of view, the structure of the narrative also reflects his conception of autobiography as literary suicide, for he arbitrarily separated his “education,” the material of the narrative, from his “life,” which he confined to the twenty year period omitted from the book. The bipartite structure serves to contrast two phases of education—one passive and accidental, the other active and purposeful—but it also imitates the splintered quality of his life. Failure may have seemed a fate worse than death to an Adams, but by admitting to the failure of his education, Adams sought to protect both the success and failure of his life from public scrutiny. Thus, Adams closed the first section with his “failure” as a Harvard professor and then omitted both his personal achievements (as a historian) and his personal tragedy (as a husband) from the narrative. Then, as the narrative resumes with the year 1892, Adams portrays himself as a dead man struggling to adjust to his resurrection—fighting off the urge to return to the Orient “to sleep forever in the trade-winds under the southern stars” (316) and trying to overcome the inertia of “drifting in the dead-waters of the fin-de-siècle” (331). In fact, of course, Adams was a man of remarkable vitality, and the writing of Mont-Saint-Michel and Chartres and the Education was a crucial accomplishment of this second phase of his life and education, for it was only in those books that Adams formulated, in the Dynamic Theory of History, an answer to the problem of death. While the implications of this theory are apocalyptic, it keeps open several possibilities for the future of man, and there is evidence that Adams prophesied disaster in the

158  The Shape of Death in American Autobiography hope of provoking a response vigorous and economical enough to avert it. In any event, the theory served him as a useful fiction, for it struck an equilibrium between the chaotic forces of nature and the resilience and power of his own mind. Indeed, upon close examination of the theory, we find that in spite of his habitual self-deprecation, Adams put his own consciousness squarely at the center of his own cosmology. In a manner reminiscent of the Transcendentalists, his formula for the universe and his account of himself were aspects of the same vision. The death of the individual and the death of the universe were connected in Adams’ thought. Both forms of the dissipation of energy fascinated him, and he displayed at times the tendency of the spiritual autobiographer to anticipate the ultimate synthesis with a certain eagerness. However, he chose, in the end, to separate these elements. His Dynamic Theory was his own final intellectual synthesis; with that, his education ended. But his life and his autobiography continued. Unable to escape time, he slowed its passage in his narrative by covering less time per chapter, as if in defiance of his own Law of Acceleration. Knowing that his theory could be neither verified nor disproved in his lifetime, he began to contemplate the future with a new equanimity and prepared to assume his proper posthumous stance outside of history. In the final chapter, he approached the inevitable renunciation of life and selfhood with remarkable serenity. Unable to include his own death in the narrative, he substituted for it the exemplary death of a friend, John Hay. Adams portrayed Hay as dying with a sense of accomplishment after having engineered a new international order. Because Adams had been involved, as an adviser, in Hay’s success, his use of Hay’s death is not entirely a gesture of deference. In addition, Hay was an appropriate surrogate because his diplomatic achievement was analogous to Adams’ intellectual one. Unable, as a skeptic, to offer a vision of his sanctification in the manner of the spiritual autobiographer, Adams imagined his afterlife as a kind of posthumous education, to be accomplished by periodic returns to history with his friend Hay. In concluding, Adams dared to hope that they might someday discover “a world that sensitive and timid creatures could regard without a shudder” (505). This final passage, though playful, is free from irony. Its optimism and the serenity of the final chapter surprise many readers, but they derive from an earned sense of triumph—both thematic and formal—over the forces of chaos and death. Concern with death is probably more prominent in The Autobiography of Malcolm X than in any of the autobiographies discussed above. Within the first few paragraphs, Malcolm informs us that violent death had decimated his father’s family and that he himself expects to die by violence. Perhaps the incident which most crucially shaped his entire life was the death of his father, who Malcolm believed was killed by white bigots enraged by his organizational work for Marcus Garvey. The

The Shape of Death in American Autobiography  159 removal of the head of the household resulted in the slow disintegration of the family, and the story of Malcolm’s childhood and adolescence became one of growing alienation from the standards of the white society whose institutions, in his eyes, hastened the destruction of his family. After his escape from the midwestern society which thwarted his middleclass aspirations, Malcolm found illegitimate outlets for his ambition in the underworld of Roxbury and Harlem. Although this subculture seemed to provide an alternative to a fate like his father’s, on the one hand, and a life of menial subservience, on the other, Malcolm’s existence continued to be overshadowed by violence. In fact, his growing status and power in the underworld were accompanied by an increasing risk of a violent and sordid end. Drugs provided a temporary escape from the fear of death and the terrible irony of his life, but only his eventual arrest and imprisonment removed him from the escalating spiral of crime and violence. A new but welcome irony characterized his life in prison; there he underwent the most liberating experience of his life—a complete conversion to the Black Muslim faith. “Laying dead” had been underworld slang for lying low; with Malcolm’s conversion came the realization that he had been spiritually dead throughout his career as a hustler. He saw that his value system had been merely a cruel caricature of the white man’s selfish economic individualism. Thus, Malcolm’s conversion represented a double triumph; it rescued him from a suicidally dangerous lifestyle and accomplished his spiritual rebirth. Malcolm’s career as a Black Muslim minister was relatively free from violence and concern with death, but his excommunication from the Nation of Islam put his career, his sanity, and his life in danger all at once. His rejection from the church which had given him a new sense of identity challenged his emotional stability, and the continued jealousy of the orthodox posed a threat to him and his family. Unable quickly to resolve the paradoxes of his predicament, Malcolm often felt trapped and overwhelmed. But this new (and final) phase of his life proved to be one of rapid growth as Malcolm sought to refashion his ideology and his identity simultaneously. Although Malcolm had to juggle various new projects in his attempt to maintain religious authority and to establish a new power base, he did not abandon the writing of his autobiography in order to save them. Rather, as the threats against him escalated, he devoted more energy to the book, which he sensed would be the most reliable surrogate for him after his death. Although he realized that his autobiography could not keep up with the danger in his life, he desperately wanted the book to record a second conversion, which occurred on a pilgrimage to Mecca and which gave him a new vision of race relations. In the expectation of death Malcolm struggled to complete his self-development and his autobiography, and the last chapters acquire a moving sense of urgency from Malcolm’s

160  The Shape of Death in American Autobiography attempt to maximize the validity and authority of the book. His apprehension of a premature and violent death was reminiscent of his days as a hustler, but his courage was no longer drug-induced. Rather, it derived from his faith and his self-resignation. His assassination realized his prediction that he would not live to read the published autobiography, which was finished only through the work of his collaborator after his death. Thus, the circumstances of his death were such that his life and his autobiography very nearly ended simultaneously. The narrative acquires a certain symmetry from the conversion at its center and from the fact that its end recalled its beginning, for Malcolm, like his father, died a martyr’s death. Although his death lay beyond the reach of the narrative, Malcolm accurately foreshadowed it, and our knowledge of the historical event inevitably and rightly informs our reading of the text. In a sense, the book’s structure and meaning were completed by the assassination. These autobiographers faced death differently. Eager for their eventual sanctification, Edward and Woolman seemed to welcome death. Franklin viewed it with curiosity and even complacency. Thoreau and Whitman looked to Nature for salvation from their sense of vulnerability. Stung by personal tragedy and afflicted by apocalyptic intuitions, Adams constructed intellectual battlements and loopholes of irony for his self-protection. And Malcolm X, living in the shadow of death, learned to see through it with a martyr’s vision. None of the autobiographers have been unconcerned with death, and their expectations of it—whether fearful, resigned, or hopeful—have strongly influenced their narratives. To a surprising degree, then, the one event which eludes direct autobiographical treatment has proven to be a significant factor in the shaping of these autobiographies. In some way, each of these writers sought in his autobiography a solution to the problem posed by his mortality, and in that sense the composition of the autobiography has been a death-defying act.

Works Cited Adams, Henry. The Education of Henry Adams: An Autobiography. Boston: Houghton Mifflin, 1918. Print. Edwards, Jonathan. Personal Narrative: Jonathan Edwards: Basic Writings. Ed. Ola Elizabeth Winslow. New York: New American Library, 1966. 81-98. Print. Franklin, Benjamin. The Autobiography. Benjamin Franklin: The Autobiography and Other Writings. Ed. L. Jesse Lemisch. New York: New American Library, 1961. 15-181. Print. Franklin, Benjamin. The Autobiography of Benjamin Franklin. Ed. Leonard W. Labaree et al. New Haven: Yale University Press, 1964. Print. Malcolm X, with Alex Haley. The Autobiography of Malcolm X. New York: Grove Press, 1965. Print. Thoreau, Henry David. Cape Cod and Miscellanies: The Writings of Henry David Thoreau, IV. Boston: Houghton Mifflin, 1904. Print.

The Shape of Death in American Autobiography  161 Thoreau, Henry David. Walden. Ed. J. Lydon Shanley. Princeton: Princeton University Press, 1971. Print. Whitman, Walt. Prose Works 1892. I. Specimen Days. Ed. Floyd Stovall. New York: New York UP, 1963. Print. Whitman, Walt. “Song of Myself.” Leaves of Grass: The Comprehensive Reader’s Edition. Eds. Harold W. Blodgett and Sculley Bradley. New York: W. W. Norton, 1965. Print. Woolman, John. The Journal and Major Essays of John Woolman. Ed. Phillips P. Moulton. New York: Oxford University Press, 1971. Print.

12 On “Freedom Writing” Expression and Repression*

In the last twelve months I have sent letters to Nicholae Ceaucescu, Andreas Papandreou, Gustav Husak, Augusto Pinochet, Fidel Castro, and P. W. Botha (three times); to high officials in the Soviet Union (not including the charming and charismatic Gorbachev); and to the heads of state of Kenya, Uganda, the Syrian Arab Republic, Somalia, Ethiopia, Turkey, Afghanistan, Pakistan, Yugoslavia, Czechoslovakia, Haiti, Ecuador, and Nepal. Some of these men are called “Premier,” some “President,” some “Prime Minister”; one is called “King.” Some, like Castro and Botha, are world-famous; others are, at least in America, relatively obscure. All are enormously powerful. Not one of them has written back. But then, I did not expect any written response or acknowledgement. I was not hoping to become pen-pals with potentates, nor was I seeking the autographs of autocrats. Rather, I wrote on behalf of people who are strangers to me, and whose names are hardly household terms, even in their native lands; people whose names I find difficult to spell and impossible to pronounce; people like Norman Kikhali, Kostadin Kalmakov, Im Tong-gru, Jiri Wolf, Smangaliso Mkhatshwa, Hind Qahwahji, Maina wa Kinyatti, Mauro Ochoa, Wang Xizhe, Reinalda del Carmen Plaza, and Fadil al-Fadil. The connection between the virtually anonymous subjects of my letters and their celebrated addressees is at once remote and vital: the former are prisoners of conscience in states headed by the latter. (One would say that the former are at the mercy of the latter, if the latter could be described as merciful.) For the last year, I have been a “freedom writer” for Amnesty International. Each month, I receive a bulletin containing a sample letter for each of three prisoners. The prisoners come from a great range of countries—from Afghanistan to Zimbabwe—but the sample letters are much the same. Each is addressed politely to the appropriate official— usually, but not always, the head of state. Each recapitulates, concisely * This essay was first published in Southwest Review 73.4 (Autumn 1988): 515–24.

On “Freedom Writing”  163 and matter-of-factly, the significant details of its case—the age and occupation of the prisoner, when the prisoner was arrested, whether the prisoner has been tried (or even indicted) for his or her alleged “crimes,” where and how long the prisoner has been held, and any known details of the prisoner’s condition. Each letter makes the same crucial assertion: that its subject is a prisoner of conscience, imprisoned—and often physically mistreated—solely for the nonviolent expression of political beliefs. Whenever possible, the letter cites national laws or international agreements violated by the prisoner’s treatment. It concludes by “respectfully requesting” the prisoner’s “immediate and unconditional release.” Exceptions to this pattern are the letters concerning the “disappeared,” persons suspected to have been abducted and murdered by police, military, or security forces. Obviously, the task of these letters is more complex. The point of “disappearing” dissidents is not merely to silence but to obliterate them, leaving no incriminating evidence of their fate—only a painful and conspicuous absence. (The transitive use of a normally intransitive verb exposes the perversity of the act, the state’s visible demonstration of its power to render its opponents invisible with impunity.) It is difficult, if not impossible, to “prove” a “disappearance”; Amnesty International gets involved only in those rare cases where some evidence is available: an eyewitness account of the abduction, say, or documentation of an illegal arrest. Since it makes no sense to request the “immediate release” of a person presumed to be dead, letters concerning the “disappeared” ask instead that the case be investigated and the findings announced. In the absence of realistic expectation of the individual’s release, it is hoped that the government may acknowledge the victim’s “disappearance” and perhaps confirm his or her death. This serves humane as well as political purposes. As one letter says of its subject, “his family must be allowed to have him returned to them if he is still alive, or they must be allowed to mourn for him if his death is officially confirmed.” I have probably never sent such important letters. Yet I do not post them in the anticipation, much less the knowledge, that they will actually reach, or be read by, their addressees. After all, each of my letters is part of a mass mailing by a network of some thirty thousand freedom writers. Presumably, only the first few monthly letters—if those—are actually read; even those would be opened and read by subordinates of their addressees. The rest are probably disposed of as soon as their nature is known. Like all mass mailings, these letters are more likely to be counted, or weighed, than read. Though not, strictly speaking, “dead letters,” they are in a sense dead on arrival, stillborn. Nevertheless, I mail them with conviction and gratification, for a number of reasons. First—and least—there may be satisfaction in expressing oneself even when there is little expectation of response to, or even reception of, one’s message. In any case, I take some small pleasure,

164  On “Freedom Writing” each month, in the very act of registering my concerns on paper and sending three letters off to different parts of the globe. My doing so may be a vestige of the Protestantism from which I have lapsed; at least, it gratifies an anti-authoritarian impulse and may serve a quasi-religious function. Prisoners of conscience are my martyrs, and sending letters is a way of paying homage to them—keeping a vigil for those brave enough to express their beliefs at almost unimaginable cost. My letters are, among other things, votive offerings. Admittedly, sending three monthly letters involves little effort or sacrifice on my part, and like more conventional religious practices, it may serve mainly to affirm my sense of my own significance in a larger scheme of things. No doubt it answers my needs more effectively than those of the prisoners; it certainly serves mine first. Moreover, like any religious practice, freedom writing may become an opiate, easing my conscience—and thus inducing complacency—rather than changing the circumstances it challenges. But participation in this rite has tended, I think, to raise my political consciousness. Sending the monthly letters not only puts me in mind of isolated and abused prisoners; it also helps me to imagine the predicament of those living in political systems in which such injustices are routine, in which the expression of certain ideas is dangerous, even suicidal. Even as this makes me grateful that I live where I may speak and write without risk to my life or liberty, it also reminds me that such relative freedom and empowerment carry responsibility, not just to condemn the brutal repression of political dissent in exotic places but to be alert to subtle forms of repression closer to home. Of course, even this consciousness-raising function of freedom writing may be dismissed as self-centered or even self-deluding. There is, however, some evidence that my letters may actually do some good in practical terms. Amnesty International periodically reassures its correspondents that the letters are effective, in a couple of ways. At the very least, prisoners aware of letter writing campaigns may find some comfort in them. Such campaigns may also serve to deter the imprisonment of other dissenters. But there are also cases in which the letters seem to have brought about improvement in the treatment of the prisoners on whose behalf they are written; occasionally, Amnesty International even reports that a prisoner on its list has been released. Indeed, it claims that between forty and fifty percent of the prisoners it adopts are treated better, or released, after campaigns on their behalf. It is difficult, of course, to tell whether, and how, freedom writers have influenced the treatment of such prisoners, and the organization never claims a simple cause-and-effect relationship. (Naturally, the regimes in question are loath to admit the organizational influence.) In any case, the percentages are far more encouraging than the absolute numbers: fewer than two hundred prisoners in ten years have benefited. This is a minority of those on Amnesty International’s list; those in turn probably comprise

On “Freedom Writing”  165 a minuscule fraction of political prisoners worldwide, many of whom are unknown to any human-rights organization. Still, the adoption of a prisoner by Amnesty International can apparently embarrass or move to action even some very oppressive regimes; the “cost” of bad publicity may suddenly seem higher than the “cost” of releasing the prisoner, or at least of treating him or her more humanely. Where one letter might be ignored, the sheer number of Amnesty International letters evidently gives them force, even though the bulk of them may go unread. While the letters may never reach those most responsible for the fates of their subjects, someone at the receiving end may get the message; the tidal wave of paper engulfing his desk means there are those on the outside who are aware of, and concerned about, those hidden deep inside the political maze. The letters I send are part of a low-tech, labor-intensive surveillance network whose purpose is not to create or keep, but to expose, secrets, and which seeks to protect individuals against abuse by the state. Purely coincidentally, some of the U.S. Mail airletters I have used were adorned with miniature satellite pictures captioned “Landsat views the earth.” I like to think that this stationery reinforced the message it carried, for Amnesty International letters tell repressive regimes that the whole world is watching them. Outsiders cannot see everything they do, but occasionally they can detect—and publicize repression. This way, even the “disappeared” may be made, in a sense, visible. So, while freedom writers lack authority within the nations to which they write, they do in fact exercise a form of political power—power they can assert only as writers. In spite of my commitment to freedom writing, I have sometimes been troubled by certain aspects of my role. For one thing, it conflicts (or appears to) with my professional ethics as an English professor. I have been careful thus far to say that I have “sent,” rather than “written,” three letters a month because my function is to transmit rather than to compose letters. Amnesty International provides its volunteers not with the raw facts of a case, but with letters ready to be sent—complete from address and salutation to closing. Official policy is ambiguous on the role of individual writers. On the one hand, the organization encourages a variety of formats in the belief that “the diversity of methods which naturally occurs when 30,000 people are writing is the best guarantee of showing widespread support for human rights protection.” On the other, it sets forth quite restrictive guidelines on content and tone, and it permits verbatim transcription as well as paraphrase of the sample letters, stating that “the fact that someone has taken the time and trouble to send a letter pressures government authorities and effects change.” Indeed, it recently removed its logo from the samples, making it easier to simply photocopy, sign, and send them. When I signed up as a freedom writer, I planned to modify each letter, giving it a personal touch; I thought the letters might be more effective

166  On “Freedom Writing” if they were not identical. But I generally resort to more or less verbatim transcription. This is easier, of course, and I soon realized that no one was likely to read the letters in sufficient numbers and detail to discover, or be affected by, individual variations of the model. Moreover, altering them proved to be trickier than I had anticipated. The sample letters are already at several removes from firsthand knowledge of the prisoners; they are summaries of information passed along a chain of communication that reaches from the prisoner through anonymous relatives, friends, and loyal supporters, to Amnesty International (which verifies the facts). Ideally, if I do my part, the information returns to the country of its origin in a form that may actually modify the circumstances it describes. But, as in any chain of communication, loss of information is inevitable—as the game “telephone” demonstrates—and I am in the position of the potentially weakest link. Without firsthand knowledge of the facts, I risk introducing error if I take too many liberties with the originals. Thus, there seems as much to lose as to gain by paraphrasing the sample letters, which state the facts clearly, efficiently, and more important, accurately. My letter’s effectiveness depends finally not on its distinctive voice—much less on the force of my signature—but on its accuracy and its participation in a chorus of protest. Still, I am not inclined to accept blindly the conclusions of someone else’s research. Indeed, doing so conflicts sharply with what I preach, and try to practice, professionally: to reach one’s own conclusions and take responsibility for them. It troubles me even more to sign my name to a document someone else has written. The term for this in my profession is plagiarism, and paraphrasing rather than transcribing the letter would not wholly eliminate the transgression. I am acutely aware that my position with regard to these letters is analogous to that of a student plagiarist, who exposes his ignorance—and thus his plagiarism—when he attempts to paraphrase a secondary source without reference to the primary sources on which it is based. So as I transcribe my Amnesty International letters each month, I am conscious that what I do is neither “free” nor “writing” in the senses in which I usually employ those terms. After all, “my” monthly letters are in effect ghost-written. In writing them, I take dictation—a term whose political sense refers to precisely the kinds of authority structures the letters purport to challenge. Of all the writing that I do, then, my “freedom writing” is uniquely constrained, uniquely determined by the authority of another. I am haunted by the suspicion that the means by which these letters are produced is somehow at odds with their avowed purposes. But of course I am being too fastidious, applying a narrow, professional— worse, “academic”—ethic in inappropriate circumstances. Certainly, a defense, or rationalization, of my practice lies readily to hand in the peculiar nature of the “genre” in question. Though my letters do not always

On “Freedom Writing”  167 mention Amnesty International, it is clear enough that they are part of an institutionally sponsored letter-writing campaign. In effect, the tens of thousands of letters amount to a kind of serial petition. Instead of one sheet passed around for multiple signatures (which would be impractical and inefficient), tens of thousands of separate sheets containing virtually the same message are simultaneously sent to a single destination. The practice of petitioning by mass mailing is pervasive and widely accepted in America today; it is a favorite device of all sorts of interest groups, whose members are not expected to craft individual letters to their senators and representatives. In this context, not originality and style, but accuracy, pertinence, and timing matter; not quality, but quantity counts. Still, copying someone else’s prose goes against strongly ingrained habits and values; much of my identity and self-esteem is invested in what and how I write. Surely I could alter the letters significantly, without danger of misstating the facts, by brightening up their nondescript style. Perhaps, too, I could repair the troubling disparity between the facts of the cases and the dispassionate tone in which they are generally reported. The facts themselves are always appalling, but the tone of the letters never betrays a trace of anger. The lack of outrage seems itself a kind of outrage. While transcribing the letters, 1 occasionally fantasize sending “poison pen” letters—or even letter bombs. I wince as I address despots as “Your Excellency” and subscribe myself “Respectfully and sincerely.” It occurs to me that I have never sent such well-meaning, important, but, in a sense, insincere letters. But while the gulf between the facts and the tone of the letters may appear absurd—even offensive—from one perspective, it is eminently sensible from another. And while I continue to find the posture of the respectful supplicant somewhat uncomfortable, I have come to appreciate the logic of the letters’ rhetoric. After all, messages do not merely, or even mainly, transmit information, and the point of these letters is not to convey facts to those ignorant of them: their addressees are presumed to be already cognizant of the cases. Rather, the most important part of the message is communicated implicitly: that Amnesty International also knows these facts, construes them differently, and has mobilized its volunteers on behalf of the prisoner in question. This point is conveyed entirely apart from rhetorical considerations, narrowly conceived; the very arrival of quantities of letters makes it unmistakable. But the rhetoric of the sample letters’ texts is more subtle and self-conscious than I at first appreciated. In addition to conveying information, all messages also characterize (or “construct”) their senders, their receivers, and the relationship between them. If Amnesty International letters are to be effective, they should—and they do—characterize their addressees as reasonable men, willing and able to correct their mistakes. The letterwriting guide is quite clear on this point and on the matter of tone: “Do not be concerned about appearing overly gracious—high-ranking government

168  On “Freedom Writing” officials expect to be addressed in this manner. . . . Never forget the person to whom you are writing is responsible for the well-being and, ultimately, the fate of the prisoner on whose behalf you are writing. Alienating the official could endanger the prisoner.” The tone I might spontaneously assume to express my own outrage or indignation would do just that (exactly that and only that). At best, it would ventilate my emotion, registering at the other end as an impotent outburst; at worst, it might harm the prisoner, serving my needs at his or her expense. To construct myself as outraged would be to construct my addressee as outrageous; to do that would be self-defeating, since it would characterize him precisely as someone incapable of responding to my demands. It lets him off the moral hook. Instead, the restrained tone of Amnesty International sample letters gives its addressees the benefit of the doubt. The letters do not accuse, insult, threaten, hector, or plead. In effect, they simply state that a particular individual is imprisoned solely for the expression of political beliefs, and they ask for the prisoner’s release. Obviously, such requests may be construed as impertinences—or even indictments—but they can also be taken seriously, at face value. Each letter holds its addressee, because of his position, personally responsible; it characterizes him as someone who, upon receipt of the relevant facts, is morally capable of investigating and resolving the problem in a reasonable and expeditious way. Thus, it invites the recipient to view the imprisonment of dissenters in an alternative moral framework to that of Realpolitik, and to act within that more liberal framework. It attempts to situate him in a world where the toleration of dissent and the correction of injustice are possible, if not desirable. To some, such tactics will seem either distressingly naive or disingenuous. And surely the effectiveness of the letters—when they are effective— has more to do with their numbers and the prestige of the sponsoring institution than with their rhetoric. But it is not necessary to assume that the rhetoric alone is effectual to see its point—that the only effective rhetoric will construct its audience as amenable to its concerns. And where other means are unavailable, or unavailing, rhetoric may help to do the job. It’s not mere “rhetoric”; sometimes, it truly is “freedom writing.” Though formulaic, Amnesty International letters are not form letters. Each attends carefully to an individual’s particular circumstances. Indeed, one of the distinctive features of the letters is the reiteration of the names of their subjects; full names are used where pronouns would normally be employed. This redundant, even ritualistic, repetition of the subject’s name is a reminder of what matters: the distinctive (and threatened) identity and dignity of the prisoner in question. A recent book on torture, Elaine Scarry’s The Body in Pain, argues that its object is neither to elicit information (which the torturers usually already possess) nor merely to inflict pain, but rather to annihilate the

On “Freedom Writing”  169 world of the victim—and thus to assert the absolute power of the state. (Imprisonment on false or illegitimate charges also serves those ends.) The repetition of the subject’s name in Amnesty International letters is one device that reaffirms the integrity of the imprisoned individual. The overall effect of the letters’ apparently restrained rhetoric is forcefully to assert the value of the prisoner to those outside the prison and beyond the reach of the repressive regime. The letters politely remind their addressees of the limits of their worlds, and of their power. There is a final reminder about rhetoric here, too: that it often calls for the modification, or even minimization, of what we may think of as our distinctive or “authentic” selves. Because they are mass mailings, Amnesty International letters are an extreme example, but not an illegitimate one. For the self-effacing style of the letters is part of a rhetorical strategy that gives the individuality of its subject precedence over that of its “author.” Its moral authority lies in its collectivity and in its incorporation of the prisoner in a world that transcends the repressive regime and offers it a model of more liberal behavior. Any assertion of my own agenda or interests, any attempt to introduce an individual tone, a trace of my distinctive self, threatens to detract attention from the needs of the prisoner at the other end. Knowing this, I more willingly subscribe myself to the words of another.

Works Cited Scarry, Elaine. The Body in Pain. New York: Oxford, 1985. Print.

13 Life in Letters Letters as Life*

I want to begin with a confession: although I’ve devoted my entire academic career to what scholars call “life writing,” beginning with my dissertation, I became interested in letters only quite recently—when I finally came to terms with documents I found in my father’s closet after his death. Indeed, it took me so long to come to value this kind of life writing that I could have called this lecture “Finally Getting Letters.” But these documents, mostly personal letters, enriched, even transformed, my understanding of my father, especially of his premarital life, when most of them were written. They also enhanced my understanding of epistolary communication. In the mid-1970s, when I was in the middle of my doctoral studies, both of my parents died in rather quick succession. My mother died of ovarian cancer in the fall of 1974, and my father succumbed to depression about eight months later. After his death, the dismal task of cleaning out the family home fell to me. Early on, however, my labors were rewarded by the unexpected discovery of a trove of personal documents in my father’s closet. At the time, too traumatized to really absorb them, I skimmed and sorted them, boxed and stored them; I did not look at them again for more than thirty years. But the delayed rediscovery of the letters has changed my relation to my academic field in two ways. For one thing, it prompted me to write a memoir of my father. So, after a career of writing about memoir, I have become a practitioner of it. For another, having long favored published life writing, I have at last become a student and fan of a private genre, correspondence (Figure 13.1). From his birth in Northern Ireland in 1906 to his death in New England in 1975, my father’s life was inflected by many world-historical events: the Armenian genocide and diaspora, when he taught English in Aleppo, Syria, in the early 1930s to Armenian refugees; the Depression, which coincided with his early adulthood; World War II, during which he served on Admiral Bull Halsey’s staff in the PTO; the Cold War, when he was a * I gave this talk as the annual Mel and Cindy Yoken Lecture at Brown University in April 2015.

Life in Letters  171

Figure 13.1  My father’s Wesleyan College yearbook photo, 1927.

high school English teacher in the home town of Herbert Philbrick, counterspy and author of I Led Three Lives; and the war in Vietnam, when he was the father of a son subject to the draft and of a daughter who worked in Vietnam for the American Friends Service Committee. Some of his letters comment directly on these events. But on that basis alone, they don’t have much claim to “historical value.” But far more than I had realized while he was alive, Dad prized correspondence, and he cultivated friends who shared that passion. Writing letters was not a mere pastime; it was a way of life for him and his close friends, male and female. To reflect this, about half of the chapters of the memoir focus on single sets of correspondence. Some of the letters in Dad’s archive were merely utilitarian, composed and deployed to achieve material ends. As a reminder of how such letters pervade and inscribe our lives, let me list some epistolary genres so mundane we take them for granted: letters of introduction, letters of application, letters of recommendation, letters of complaint, thank-you notes

172  Life in Letters (which my mother referred to as “bread-and-butter” notes), letters of resignation, letters of apology, and last, but not least, letters of condolence. Such letters are generally not interesting as texts. And the utilitarian letters in Dad’s archive are of value to me largely as biographical evidence rather than for their own sakes. For example, my father saved the letters of recommendation that his father Isaac, who was skilled in Jacquard weaving, used to find employment in the American linen industry when he brought his family here from Northern Ireland in 1910. This one from his Irish employer, Bessbrook Spinning Company, attests tersely to my grandfather’s skill, knowledge, and character (Figure 13.2). Significantly, it was complemented by one from his Presbyterian pastor, attesting to Isaac’s regular attendance at Sabbath services and to his membership in the Men’s Protestant Total Abstinence Union. Isaac was careful to procure these letters before embarking for America. So while these letters are not rhetorically complex, they would have been some of his most valuable assets in his transatlantic migration—capital letters, pardon the pun.

Figure 13.2  Letter of recommendation for Isaac Couser from Bessbrook Spinning Company, 1910.

The only personal letter in the archive that originated in Ireland is in another category entirely. It’s a brief note written to Isaac by his aged mother Jane. August 15 My Dear Son, I write you a few lines to let you know I am breathing[?] I wish I could see you

Life in Letters  173 I would tell you more than I could write I am all alone today only [Mrs. Brown?] is with me I feel it very much to be alone but it will come to an end some day They are all good enough to me You said when you went away you would come to see me in two years Many a time I wonder will I ever live to see you again Remember me to wife and children May god bless you all I feel tired and can write no more You can barely be able to read this So goodbye from your loving mother to death Jane Couser God bless you all. I find this scrawled letter very affecting—all the more so when I consider how many versions of it, in various languages, must have been sent to American immigrants over the centuries. In a memoir of her Irish Catholic family, The Family Silver, Sharon O’Brien remarks, I think that we inherit our ancestors’ emotional histories, particularly their unexpressed stories of suffering, exile, and yearning. . . . From what we know of trauma now, it’s clear that both those who stayed in Ireland and those who left, never to return to their homeland, were marked emotionally and psychologically, and that inheritance has to have marked their children and grandchildren. (80) My great-grandmother Jane’s letter, written one hundred years ago, certainly testifies to the emotional toll of immigration on both sides of the Atlantic. Let me turn now to the next generation, correspondence written by or to my father. Personal letters transcend the tidy categories I enumerated earlier. Not task oriented, they express emotion rather than convey information or ideas. But they have their own work to do, and for that work, execution—style, tone—matters more. By definition, personal correspondence connects parties known to each other—friends, relatives, lovers. Obviously, it can constitute a very useful biographical source. But far more than just offering evidence of the whereabouts and actions of the author, it implicitly characterizes the relationships between the correspondents—what they are understood to be, how much is invested in them. Moreover, the correspondence enacts these connections. This is especially true of the most intimate of epistolary genres, the love letter. I was startled to find in my father’s archive a considerable number of love letters from a woman I’d never heard of, called “Rody”

174  Life in Letters

Figure 13.3  Rosalind Parker Manchester Central High School yearbook photo, 1923.

(Figure 13.3). They were written from the late 1920s, when she and Dad graduated from college, to the mid-1930s, when Dad finally ended their relationship. To my surprise, most of the surviving correspondence was written when Rody and Dad were living mere blocks from one another in Manchester, New Hampshire, in the late 1920s—he in a rooming house, she at home with her family. For matter-of-fact communication, they presumably used the telephone; for romance, correspondence was the medium. Sometimes Rody commandeered the family automobile to hand-deliver her notes or just to drive by my father’s place: Very late (Ha! Ha!) tonight I had an errand at the drug store for “pills”—& I drove by to pay my respects to your lamp light—it was burning & it blinked for me.

Life in Letters  175 Darling—I know I’m a fool to write you all this. Please telephone me at home tomorrow evening—or be there. I do so want to be sure everything is right with you—as it is with me when you are with me. Rody’s correspondence is typically very brief and lyrical, written in a spidery script; here is a mere note that accompanied her gift of a miniature amaryllis (Figure 13.4).

Figure 13.4  Note to Dad from Rody.

176  Life in Letters Rody may have chosen the plant partly for its name, amoretta, a feminine diminutive of the Italian word for love. More than that, though, I take her verbal characterization of the flower to be a sly, playful, even suggestive self-portrait: “Very active even without sunlight, she is forever posturing.” Rody’s letters are first and foremost love letters, written mainly, usually solely, to express longing for Dad. As a result, they convey very little information about either of them or their lives. They refer to others—family members and a few friends or acquaintances—but only occasionally, and only in passing. So they don’t supply much in the way of specifics of his life and habits. In that way, they are frustrating to me as a memoirist. But their biographical significance may lie precisely in their neglect of the mundane; Rody wrote to attract my father and bind him to her. She knows him, and the letters not only rely on, but demonstrate, that knowledge; they enact emotional intimacy—or seek to. I admit to being so charmed by Rody’s prose that, when reading her letters, I find myself rooting for her to succeed in winning Dad. But then I catch myself, thinking it’s disloyal to my mother. For that matter, rooting for Rody is rooting against myself; I wouldn’t be, or I wouldn’t be me, had Dad married Rody. But Rody had a romantic sensibility and a gift for written expression that were not so apparent in Mum. In any case, her letters are not mere evidence of their relationship, biographical data; they are the very stuff of that relationship. And it must mean something that Dad kept them for the rest of his life. Not long after his graduation from Wesleyan in 1927, my father taught English for three years at a high school in Aleppo—a city more often in the news today than ever before in my lifetime. Aleppo College, as the school was called, was the successor to Central Turkey College, which had been established in 1874 in Aintab (now Gaziantep) by the American Board of Commissioners for Foreign Missions to educate Armenian Protestants. That school was closed during World War I but reestablished in Aleppo to serve Armenian refugees who had fled the genocide perpetrated by the Turks—just marking its hundredth anniversary (despite Turkey’s ongoing denial and President Obama’s refusal to pronounce the word “genocide”). My father’s absence from home prompted many letters. He reported periodically to his church; more important, he could maintain relationships with friends and family only via the mails. As a result, his sojourn in Aleppo is the best documented period of his life (Figure 13.5). Oddly, no letters from Rody survive from this period. But Dad received tender love letters from another source—an older male friend, Edgar Hawthorne, proprietor of an antiques shop in Concord, New Hampshire,

Life in Letters  177

Figure 13.5.  Hand-drawn Map of Aleppo.

where my father had taught English in the years immediately preceding his departure for Aleppo. Their relationship constituted what social

178  Life in Letters historians call a “romantic friendship,” a passionate relationship between members of the same sex—of a sort that supposedly ceased to exist after homosexuality was medicalized and stigmatized in the late 19th century. This was another dimension of his life that was entirely unknown to me. Edgar wrote regularly and at length throughout Dad’s absence, beginning soon after his departure. Indeed, he made sure Dad would have a letter awaiting him when he arrived: Dear Grif:— I want a few words from me to be here in Aleppo, waiting to greet you upon your arrival. . . . I have trailed you across the “Big Pond.” You must have had some wonderful moonlight nights. The first few evenings after you had sailed, I saw the moon come up out of the East and wondered if recently you had been appreciating it. . . . In your mail you will find this “God Bless You” from me—not in stentorian bass but whispered like the last, soft mute of the organ. And now good night, Edgar [Edgar’s characteristic sign-off] I like Edgar’s “here in Aleppo”; if Edgar can’t be there in the flesh, he’ll be there in his prose, a very thoughtful gesture of self-projection, virtual travel before the internet. In all, Edgar sent Dad more than two dozen letters in less than three years, some well over a thousand words long. Most of the correspondence is decidedly subjective; indeed, its main topic is the relationship itself, their feelings for each other. Each says that the other is often in his thoughts and that the letters represent only their verbal communion. Here’s Edgar: Frequently . . . my mind has been instantaneously directed to thoughts of you. I would be surprised to hear myself speak your name and my mind would then carry on a sort of conversational monologue. At other times I have had the impression of hearing my name spoken. . . . Through these experiences I feel that we can have moments together without the stimulus of a stated schedule of letters on your part. Edgar was as appreciative of natural as of artistic beauty, and his letters often contain lyrical descriptions of New England scenery in changing seasons, which he knew Dad would miss. His prose is romantic, but never cloying, much less clichéd. Two letters contained actual bits of nature: a pressed bit of vetch, which survives; and a milkweed seed, which Edgar suggested Dad should “try out in the sunlight” (i.e., toss in the air on a sunny day) as Edgar had done before dispatching it. Indeed, his description of the seed makes it a metaphor for their correspondence:

Life in Letters  179 The floating, irised threads of gossamer resemble the fanciful thoughts and desires we have that are unutterable; the little brown seed [is] like the word we attach to that thought or wish. Dad shared Edgar’s sense of this nonverbal communication. In a sense, then, the letters represent only the occasional verbal distillate of a relationship that was of constant concern to both. But in another, important sense, the letters themselves constitute the friendship: for the duration of Dad’s time in Aleppo, they were the medium through which this friendship was sustained and developed. In Yours Ever: People and Their Letters, Thomas Mallon makes the nice point that whereas “a telephone call or instant message actually conveys one place to another, . . . letters always conveyed not only a place but a time as well, one that had already passed” (13). Reading Dad’s letters transports me in just that way. Though they have nothing to do with me, having been written more than a decade before I was born, they make me feel present in Dad’s early life, as Rody’s do. There is a voyeuristic element to this, but that doesn’t bother me much: I am immensely grateful for this window into his life. I have an embarrassing tendency to choke up when I read them aloud in lectures. I have concluded that this is because Edgar was able to express love for my father to my father in a way I was never able to myself. My father’s archive contained not a single letter from my mother. One reason for this is that they met as colleagues in the English Department at Manchester Central High School in the late 1930s and were not separated until World War II—indeed, not until late in the war. My parents were married in the summer of 1941 (Figure 13.6). Dad enlisted in the Navy soon after war was declared but was stationed in New England until early in 1945, when he was assigned to Pearl Harbor. By that time my sister Jane had been born. The separation must have been difficult for Mum and Dad as relative newlyweds and as new parents; it is fortunate for me, however, for it meant that, with the rare exception of a pre-scheduled phone call, they could communicate only by correspondence. This generated a significant set of personal letters from him to her. When I first came across them, I thought of them as the “war letters.” I expected to learn what ships Dad had been on, where and when they sailed, and so on. My initial response to reading these letters, however, was disappointment: they contained very little information about the war. They did not provide the long-deferred answer to the question he was no longer alive to answer: “What did you do in the War, Daddy?” The first of the ten surviving letters is dated February 5, 1945; the last, June 19, 1945. Dad seems to have written to Mum almost every other day, and his letters were quite long, averaging almost 1,000 words apiece. Ten letters over a five-month period does not constitute a very

180  Life in Letters

Figure 13.6  Wedding day photo of my parents, August 1941.

full record, but those are the months I am most curious about—the period of his active service in a war theater. More frustrating than the gaps between them is their vagueness about his duties. This is primarily a function of censorship. For fear that mail would be intercepted and used by the enemy, service members were forbidden to reveal details of their whereabouts and activities. This was not left to self-censorship on the honor system; letters were screened to be sure they were discreet. Indeed, one of Dad’s duties as an officer was to vet mail sent home by those of lower ranks; in turn, his letters would have been read by someone of higher rank. So the military hierarchy functioned as a tiered system of surveillance. Forbidden to trade in the hard facts of war, combatants also might have been somewhat constrained in their expression of fear, anger, low morale. They might have held back from expressing their most powerful emotions. It was not always so. I know this because among the other surprises in Dad’s personal archive was a set of Civil War letters written by a Union soldier, Theodore Nutting of Plymouth, New Hampshire. (I believe Dad acquired this correspondence from his friend Edgar’s antiques shop.) Nutting’s letters are strikingly different from Dad’s in their indiscretion. Whereas Dad’s return address is always the same and always opaque (Fleet Post Office, SF), Nutting not only discloses his current location, he often divulges exactly how his unit got there.

Life in Letters  181 We left Newport News the 25th of last month; went to Baltimore— from thence by Rail to Pittsburgh Penn, from thence through Columbus Ohio to Cincinnati and from there we crossed the Ohio river into Covington Kentucky; from thence we proceeded to Lexington after stopping at this place about a week we left and marched to Winchester where we are now doing Provost guard duty in the Village. (April 12, 1863) Evidently, Civil War letters were not screened or censored. Had they been, Nutting’s letters would surely not have recorded his concerted efforts to get medical leave; his indifference toward the issue of slavery—“I shall not fight a great deal more for Niggers” (January 13, 1863); and his lack of respect for officers (Figure 13.7): I should have finished this letter last night, but while we were at supper the Steward came in and announced that Gen. Rosecrans would

Figure 13.7  Letter from Theodore Nutting to his mother and sister, 1863.

182  Life in Letters pass in the next train and that all who wished to go to the Depot could do so without a pass: so there was a great rush to see the distinguished leader of the “Army of the Cumberland.” . . . I had a fair view of him, but I did not cheer for him as the others did; . . . cheering these Military men “played” out with me a long time ago. I am not going to tear my throat and lungs out cheering and hurrahing for a man because he wears two stars on his shoulders. (October 26, 1863; emphasis in original) Letters connect two places, the point of origin and that of delivery, giving the writer a kind of virtual presence with the reader. But while they also unite two moments—that of composition and that of consumption—a gap remains between them. That gap can be excruciating in wartime: thus, while each letter home reassures his family that Theodore survived to write it, it does not guarantee that he has not died since. The letters are reminders of what may happen—and in Theodore’s case, eventually did happen. Such are the complex space-time dynamics of epistolary relationships. While Nutting’s letters may have little historical value, they do put his short life on record. However petty and understandably self-serving his concerns, his letters were his lifeline to his family, and through them we have access to a life that otherwise would be entirely absent from the historical record. His letters were his way of reaffirming his identity at a time when his life was threatened and of maintaining an all too tenuous connection with people at home on whom he depended for emotional support. When I learned that he had died in a Confederate prison camp, I felt a genuine pang of grief; I had never felt the cost of the Civil War so immediately. I suspect that the expression of analogous sentiments by combatants in World War II was strongly discouraged—if not explicitly, then by the knowledge that letters were subject to censorship. And that is a significant loss to free expression and to the historical record. Dad clearly chafed under the constraints on correspondence. In midFebruary, he wrote: “At sea again and en route to my original destination (getting tired of that phrase—wish censorship would allow me to vary it).” Apparently, not only did censorship preclude naming his destination; he was required to use a stock phrase for it, to defeat any attempt at encoding it. Initially I had (naively) thought that this correspondence between him and Mum would involve his telling her about the war and her telling him about the home front. As it turned out, his letters reveal almost nothing about the war, but a great deal about the home front. At least I have that: sadly, none of Mum’s letters to him have survived. The military discouraged combatants from keeping correspondence to prevent personal details from being used coercively in case of capture. This seems unlikely in the case of seagoing personnel. But that was the policy.

Life in Letters  183 A larger phenomenon gets exposed here: the gender imbalance in the records of the period. Service members’ letters (mostly written by men, of course) have been archived and anthologized in great numbers, while letters from the home front (mostly by women) have not. The relative dearth of surviving letters from home is particularly ironic considering that the writing of such letters, however heartfelt, was not entirely spontaneous: the government strongly encouraged civilians to write to service members. Posters proclaimed: “You write. He’ll fight!” Knowing that mail from home was a morale-booster, those in command made it a very high priority. And letters reached combatants with impressive speed and regularity. While in the Pacific, Dad speaks of receiving letters from home in less than a week. (For that matter, so did Theodore Nutting.) In the very first surviving letter, Dad reflected on the death of someone he and Mum knew, a Marine lost in the invasion of an island Dad had visited (probably Midway Atoll): 5 February 1945 Dear Ann, There is a strong urge upon me to talk to you today. Talking would be so much better than just writing. There would be your comments to meet, your mind, your clearness and good sense to steady my own thinking. But there is no help for that so you will have to put up with my soliloquy. So near to where Roger died, I cannot help but think much of him these days and of the significance of his death. I have stood on the beach where he fought and looked at the atoll which became ours because he and his fellow Marines gave their lives for it. Physically, it is so little—a few acres of coral sand and broken palms barely rising above the level of the sea. In the strategy of the Pacific war, however, it was very important. Symbolically it may have great and far consequences in the sort of world that will resolve out of this war and the peace to come. For reasons I’ve already suggested, Dad’s letters to Mum do not constitute a war diary. Nor could they have. After my initial disappointment, however, I have come to value them for what they are: a moving testament of his love for her (and for my newborn sister) and to the happiness of the early years of marriage, during which they began to create the family I was to join soon after the war ended. The letters were his means of engaging vicariously (or virtually, as we would say today) with his distant wife and child, his medium for shaping those relationships from afar. For me—a secondary and unanticipated audience—the letters offer invaluable insight into the relation that engendered me and my nuclear

184  Life in Letters family before I joined it. Reading them, then, is an odd experience. Insofar as the letters are intimate and not intended for me, reading them feels somewhat voyeuristic. Insofar as they are very much concerned with the development of my infant sister, reading them might also arouse retrospective jealousy of the attention lavished on her. But for the most part, I’m grateful for access to this world: if not for the war, which separated Dad and Mum, it would be utterly hidden from me. Under what other circumstances do children have entrée to the world in which they were conceived? So despite my initial disappointment with the “war letters,” I have come to treasure them. I share the sentiments of Blake Morrison, who used his parents’ letters in writing memoirs of them: How did I feel reading their letters? . . . I felt excited, guilty, lucky, furtive, amazed. What did I think? I thought it was miraculous to encounter my parents like this—when they weren’t my parents, before they married or even knew they’d be together. (94) Needless to say, as objects, rather than texts, the letters also function as tangible, but legible remains. As such they perform a different sort of work, that of memorializing their authors. While Dad relished certain features of life in Hawai‘i, his letters reveal growing impatience with his duties there and his desire for a more active role. On March 23, 1945, on the eve of his 39th birthday, he voiced his dissatisfaction: You ask many times how I like what I am doing. The answer is that I don’t, Ann. It is tolerable and I am not making myself unhappy, but I do feel wasted in this sort of thing. . . . So I am trying to look the situation over very carefully before I make a move, though my greatest unrest comes from holding back in this way. . . . I haven’t spoken very cheerfully about my duty but don’t you worry. Things will break right, I know. Eventually, he requested, and was assigned to, sea duty. One clue is that his return address changed, from Service Squadron 8, in Pearl Harbor, to Service Squadron 10, which was located thousands of miles to the west. Another clue: in a letter of June 18, he refers explicitly to leaving “Pearl” and expresses satisfaction at having a more active role as the war winds down (Figure 13.8). I believe that this reassignment came in April. One piece of evidence is an extraordinary—indeed, unique—letter, one that stands out from the rest in three ways. First, it is typed, on official Navy stationery. Second,

Life in Letters  185

Figure 13.8.  Dad on Navy ship in PTO, 1945.

it is addressed not to Mum, or to her and Jane (as a few are), but to Jane alone. Third, its tone is entirely unprecedented. 28th April 1945 My very dear Jane, If so much of my time had not been taken up advising Admiral Nimitz and General MacArthur, I would have written you sooner to explain my long absence from home and honorable duties as your father. You have probably missed me at 6:30 in the morning when you had just about given up hope that anybody in the house was ever going to wake up. Perhaps you are having some difficulty with your mother in this respect at present. But about mothers you will soon discover like most wise children that you will have to take them as they are. One mustn’t wait too long in life to learn tolerance, you know, and like charity it begins at home. As for my absence, well, it seems that your rich Uncle Sam, who is sometimes a haughty and provincial old codger, decided that the gangs of hoodlum Heinies and Nips who were pushing our neighbors around, were working up to him as the next victim, and decided to do something about it. He is rather a determined and

186  Life in Letters fierce old guy when his temper is up. So one day he said to me, “You know, it’s time we went out and got those guys.” It has taken a little longer than we expected so you will have to wait a bit longer for me to come home and tell you how I won the war. We’ll have fun, though, when I do come home, your mother, you and I. Besides, I have been collecting some nice pets for you. Pass the word to your mother that she will have to make room for a tiger and an elephant (just a small elephant). Had rather a rough time talking Rufus (that’s the tiger) into coming stateside with me, but when he heard that you were such a nice, smiling little girl and that there were some lady tigers in the U.S., it changed his outlook entirely. He is all for becoming a citizen right away and settling down with us. The two of them will make nice playmates for you, and useful too. On cold nights the tiger can sleep at the bottom of your bed and keep you warm; and if there is ever anything you need to remember, like your mother’s birthday, you can always tell it to the elephant because they never forget. There is also a crusty old parrot with a lot of experience in the Navy who should make a good tutor and confidential advisor for you. He is a real “sea lawyer,” has seen an awful lot of life in Navy ports and speaks a colorful language. Perhaps a little too colorful for your mother’s taste, but of course your mother has lived a very sheltered life, and for the last four years has been out of the rain entirely. . . . Don’t mention it to your mother, as I want to surprise her, but I will also bring home a couple of cute native girls with rings in their noses and grass skirts on their hips. She has always wanted a couple of helpers around the house, and in this way you and I can probably get out of washing the dishes. And for myself I will bring a little Philippine houseboy because I will need someone to keep my dress clothes in order so that I can take your mother out dancing every night. . . . So be a good girl until I come home with all my war trophies, and be sure to keep your mother well-humored. You’ll find that a smile and a little Blarney will go a long way. But don’t let her begin this business of saying, “I love you still,” the way she does. That will put you at a disadvantage from the start. Your Sea-Daddy Griffith Couser P. S. Don’t breathe a word about those native girls. Remember, at this time, Jane was years away from being able to read. Dad was having a lot of fun here, imagining an idyllic home life after a hero’s return—with a wife he missed hugely and a daughter he barely knew. He was also, I think, hinting at some of the temptations, dangers, and habits

Life in Letters  187 of military life—the blue language—that would require adjustment to a domestic regimen. He gently ribbed Mum about her conditional expressions of love (I love you still). I find all of this very charming and affecting— a side of him I rarely saw as his son. This aspect of the letter reflects his confidence that the war will be won in the foreseeable future. So he can begin to invest in a vision of a post-war family life that is domestic, but also somehow exotic, stocked with reminders of his far travels and adventures. Indeed, he imagines quite a complex ménage, not to say menagerie. But the most unusual part of the letter is its mock-boastful rhetoric. On one level, this is clearly a joke. Dad knew he was only a small cog in a large war machine. At the same time, this letter hints, by exaggeration, at his pride that he was about to assume a more significant role in the real business of the war. Hidden in the mock-heroic rhetoric is his pleasure in having obtained a new assignment, such that, as he said in a letter of June 18, 1945, after the war “I know I can look anyone in the face and say that I did my part, that I have not avoided what other men have been called upon to do.” He might still be in a service squadron, rather than a battle squadron, but he would be much closer to actual fighting. Indeed, for his exemplary service in support of the invasion of Okinawa, he was awarded a Bronze Medal. In any case, having been assigned to sea duty, he could imagine returning a hero (at least in his own mind) and enjoying a peace he had helped to bring about. I can sense here his feeling that he will have earned the pleasure of post-war family life. But I do wonder what the censors made of this fantasy. I could go on—and on—quoting and discussing his letters, but this is the last period of his life that produced letters, and I need to conclude. I want to end my remarks with two pop culture references that attest to current interest in old-fashioned correspondence, which, since the advent of email in the 1990s, many have thought of as a lost art. The first of these is the 2013 Spike Jonze film, Her. The protagonist, Theodore Twombly, is paid—evidently very well—by a firm called BeautifulHandwrittenLetters.com to compose personal letters for clients. There are many ironies here, beginning with the company’s name, whose “dot-com” seems at odds with its celebration of the handwritten. Moreover, Theodore’s letters are neither beautiful—his prose is quite pedestrian—nor handwritten—he dictates them, then they’re printed in cursive script. Indeed, the letters’ ghost-authorship seems to be an open secret; their recipients are not fooled. In this not-too-distant future, “when you care enough to send the very best,” you don’t send a Hallmark card; you commission a “handwritten letter” the way you might send FTD flowers that were handpicked, just not by you. Despite these ironies, I think Jonze intends a tribute to the enduring stature of the analog letter (which we now know by the dismissive

188  Life in Letters retronym “snail mail”) and of handwriting itself, which should function as a sign and seal of authenticity, uniqueness, and individuality—but in the film is the mere simulacrum of those things. The film accords surprising respect to handwritten letters—even if that respect is tinged with misplaced nostalgia, as if they were obsolete—dead letters, pardon the pun. In searching for comment on this feature of the film I stumbled on a website called “handwrittenletters.com.” I guess I shouldn’t have been surprised. This site allows people to post photos of handwritten letters, and it provides encouragement in the form of instructional videos on topics like “How to Write a Love Letter.” (Tip #3: Use your own voice!) I also came across references to an artist, Ivan Cash, who has organized an international art project that involves transcribing and illustrating emails and posting them. The project, snailmailmyemail.org, has really taken off; to date, volunteers have converted tens of thousands of emails into tangible form. Samples are now available in book form. Like Her but without the irony, these phenomena speak to the enduring appeal of the handwritten letter. (Which, my inner pedant can’t help pointing out, is actually digital in a literal sense—made with one’s one digits.) My other example of surprising pop culture testimony to the value of written correspondence is a song called “We Used to Wait” on Arcade Fire’s Suburbs album (2010). The lyrics express wonder at having had to wait for a written message to arrive. And they lament the present period, when people no longer write down their “true heart[s].” Finally, they marvel that something as small as a letter could “keep you alive.” The lyrics are a significant expression of nostalgia for the era before email and other forms of electronic social media. Here the handwritten letter is associated with authentic self-expression in the context of a romantic relationship—superior to supposedly personal contemporary digital media like email and texting. The song highlights two significant aspects of written correspondence: one temporal—the delay between sending and receiving—and one material—the disproportion between a letter’s physical insubstantiality and its potential emotional power. I was initially surprised to come across this sentiment in a contemporary song, but, insofar as the members of Arcade Fire reached puberty before the advent of email, I realized they’re not so different from my generation. My father’s letters certainly were worth my waiting to get—first when I found them, some fifty years after the earliest of them were written, and then some thirty years later, when I was finally able to attend fully to them. They continue to keep Dad alive and in relationship with me.

Life in Letters  189

Works Cited Arcade Fire. “We Used to Wait.” Suburbs. Mercury. 2010. Mallon, Thomas. Yours Ever: People and Their Letters. New York: Pantheon, 2009. Print. Morrison, Blake. Things My Mother Never Told Me. London: Chatto and Windus, 2002. Print. O’Brien, Sharon. The Family Silver: A Memoir of Depression and Inheritance. Chicago: University of Chicago Press, 2004.

Index

Page numbers in italic indicate figures. Page numbers in bold indicate tables.

a/b:Auto/biography Studies 22 Abrams, M.H.: Glossary of Literary Terms 62 Adams, Henry 2, 156–158 Adams, Lorraine 18, 28 Aleppo 176–178; map of 177 Alzheimer’s disease 33; see dementia Americans with Disabilities Act 20, 27 Amnesty International 162–169 Amundson, Ron 26–27, 130 apologia 7, 18 Arcade Fire 188 Armenian genocide 176 assisted suicide 25; narratives of 5, 7 Attia, Peter 144 autism: and memoir 32–33; “epidemic of” 124 autobiography 10, 11, 22 autonomy 140 autopathography 64–65 Ayer, A.J. 100–102, 111n2 Barton, Maria (author’s niece) 124–130 Battin, Margaret Pabst 145–146 Bayley, John 80, 82 Beauchamp, Tom, and James Childress 140 biography 22 Biography (journal) 22 biomedical ethics 140, 144 Bloland, Sue Erikson 107–108 Braebner, Joyce, and Harvey Pekar: Our Cancer Year 51 breast cancer narratives 4, 8; and women’s rights movement 19, 28

Brown, Jeffrey: Funny Misshapen Body 49 Bush, George W.: Decision Points 18 caregiving 78–92, 140; see also dementia case studies 139, 141–143; conflict of interest in 142 CHARGE syndrome 123–130 Charon, Rita 139, 141 Chast, Roz 60n1 Cheever, John 102–103 Cheever, Susan 102–103 Civil War 180–182 Clark, Hilary 139 Clinton, Bill 113–114, 121 Cohen, Elizabeth 72, 81, 85–88 conversion narrative 15 Couser, Ann Van Stelten (author’s mother) 133, 170, 180, 182–187 Couser, William Griffith (author’s father): death of 3, 7, 171, 180; depression of 130–136, 146–148; as letter-writer 170–189; in WWII 179–180, 183–187, 185 Davis, Patti 70 Davison, Al: The Spiral Cage 39, 40, 51–53, 54 death: and life writing 2–8, 140, 149–160 DeBaggio, Thomas: Losing My Mind 33, 79 De Falco, Amelia 38, 51

Index 191 dementia 77–92; demographics and gendering of narratives of 79–82, 86; motives of narratives of 82, 90–92; role of memory in 86–88 De Milly, Walter A. 73 depression 130–137; and trauma 135–136 diagnosis 123–137; of CHARGE syndrome 123–130; as declarative speech act 126–130; of depression 130–137; and harm 123–137; ownership of 127–128; and narrative 123–137; vs. prognosis 128; reliability of 134; validity of 134 Diagnostic and Statistical Manual of Mental Disorders (DMS) (various editions) 131–137 Dickey, Christopher 96 Dickey, James 96 Dictionary of American Biography 20 disability 123–137; and abortion 126, 128–129; vs. illness 145; see also quality of life Disability Experiences (reference volume) 29 disability memoir 19–20; as comingout story 29; and the disability rights movement 20; as narrative of emancipation 30–31; rhetorics of 29–31; and stigma 29, 44 “disability paradox” 24, 26, 129 Dorris, Michael: The Broken Cord 32 Dössekker, Bruno, aka “Binjamin Wilkomirski 68–69 DNA 140 Dunham, Ann 114–118 Dunlap-Shohl, Peter: My Degeneration 39 Edwards, Jonathan 2, 70, 150 El Refaie, Elizabeth 37, 39 emanata 37 embodiment in life writing 2 Engelberg, Miriam: Cancer Made Me a Shallower Person 45, 46–48 Erikson, Erik 107–108 ethics, of life writing 139–148 Fairey, Wendy 100–102 Farmer, Joyce: Special Exits 51 Fies, Brian: Mom’s Cancer 46–49, 49

Fitzgerald, F. Scott 100–101 focusing illusion 26–27, 129 Frank, Arthur 65 Franklin, Benjamin 2, 152–153 Franzen, Jonathan 81, 83–85 Freadman, Richard 69 “freedom writing” 162–169; rhetorical considerations in 167–169 Freeman, Aviva 63–64 Frey, James: A Million Little Pieces 11 Garland-Thomson, Rosemarie 59 gay rights movement 5, 19 genre 62–74; epistolary genres 171–172 Getting a Life 65 Goffman, Erving 133 Golden Rule 144–145 Graham, Sheilah 100–102 “graphic medicine” 36 graphic memoir 35–60; and autism 35; avatars in 44; difficulty of reading 36; expanded authorship of 35; expanded readership of 35; vs photography 37, 44; vs print 36–41, 44; as self-portraiture 37, 39; three-dimensional modeling in 51 Grandin, Temple: and autistic memoir 33 Grealy, Lucy 6, 19, 66 Greenberg, Gary 134–135 Griffith, Jane (sister of author) 183–187 Guston, Philip 103–107, 111n4 Hammett, Dashiell 98–99 Hammett, Josephine 98–99 Hawthorne, Edgar (friend of William G Couser) 176–179 Hayden, Jennifer: The Story of My Tits 44 hedonics 26, 146 Hellman, Lillian 98–99 HIV/AIDS narratives 4, 8; and gay rights movement 19, 28 Hodel, Steven 73 Holocaust testimony 68–69 Hopkins, Brooke 145–146 Howells, William Dean 20, 32, 35 HRQOL (health-related quality of life) 23–24, 26–27

192  Index IDEA (Individuals with Disabilities Education Act) 128 “impairment” vs. “disability” 25–26, 29, 33, 37, 128 Jonze, Spike 187 Josselson, Ruthellen 142–143 Kahn, Nathaniel 72, 100, 111 Karasik, Paul, and Judy Karasik: The Ride Together 51 Karr, Mary 66 Kirk, Stuart A. and Herb Kutchins 131–133, 136–137 Kleege, Georgina: Sight Unseen 30 Koch, Christina Maria 36 Kuusisto, Stephen: Planet of the Blind 30 Leavitt, Sarah: Tangles 51–52, 52 Leder, Drew 36 Lehrer, Riva 59–60 Lejeune, Philippe 68 Leka, Kaisa: I Am Not These Feet 44 letters (correspondence): as life writing 170–188 Lewis, Bradley 134–135 life writing 12–20; defined 12; in colonial America 15–16, 22–33 Life Writing (journal) 22 Linton, Simi 128 Lockridge, Larry 97–98, 111 Lockridge, Ross, Jr. 97–98 Lynch, Dorothea 44, 45 Mächler, Stefan 68 Mairs, Nancy 123–125 Malamud, Bernard 108–110 Malamud Smith, Janna 108–111 Malcolm X 2; Autobiography 158–160 Mallon, Thomas 179 Matthews, Sebastian 96–97 Matthews, William 96–97 Mayer, Musa 94, 103–107, 110, 111 McBryde Johnson, Harriet 6 McCloud, Scott: Understanding Comics 41, 42–43, 44

McKim, Musa 103–104 McLean Hospital 130–134, 146–148 medical paradigm 25; see also social paradigm Medway, Peter 63–64 Mendelsund, Peter 37 memoir 10–20; defined 11; of fathers 69–74; and memory 12; of mothers 69; and the novel 13–15; as narrative of filiation 71–74, 113–121; as portrait 70 memoir boom 19, 32; backlash against 65, 139 Miller, Carolyn 72 Miller, Nancy K 95 Miller, Sue 72, 88–92 Murdoch, Iris 80, 82 narrative medicine 134–135, 141 nobody memoir 17, 18, 28, 66 Nutting, Theodore 180–182 Obama, Barack Hussein, Jr. 113–121; African-American identity of 114–115, 117–118, 121; African heritage 118–121; and Islam 117, 121 Obama, Barack Hussein, Sr. 113 obituary 5–7 O’Neill, Paul 71 Parker, Rosalind (aka Rody) (girlfriend of William G Couser) 173–176 patriography 77–92, 94–111, 113– 121; gendering of 94; and illegitimacy 100–101; motives of 95, 97, 102–103, 111 Peace, William 25 Porter, Roger 95, 100, 107, 111n1 quality of life 23–33, 129–130, 145–156 “quality-of-life writing” 22–33 Reagan, Maureen 70 Richards, Eugene: Exploding into Life 44, 45 Roth, Philip 147

Index 193 Rumsfeld, Donald: Known and Unknown 18 Sacks, Oliver 140, 142 Salinger, J.D. 99 Scarry, Elaine 168–169 Schweik, Susan 59 Shenk, David 77–78, 82–83, 85 Simon, Rachel: Riding the Bus with My Sister 32 Singer, Peter 6, 25 Sienkiewicz-Mercer, Ruth: I Raise My Eyes to Say Yes 30–31 slave narrative 8, 16, 31 Small, David: Stitches 36, 51 social paradigm 25, 26, 33, 37–38, 128; see also medical paradigm somebody memoir 17–19, 28 “some body” memoir 17, 18, 28, 139 Smith, Sidonie 64, 67 Spiegelman, Art: Maus 44, 83 Spinelli, Jack (grand-nephew of author) 124–130 spiritual autobiography: Puritan 149–150; Quaker 150–151 Squier, Susan 38 stunt memoir 17 suicide note 6, 7

Thoreau, Henry David 2, 153–155; and captivity narrative 67; genre of 66–67; Walden: as white slave narrative 16 Trillin, Calvin 70 Vanistendael, Judith: When David Lost His Voice 51–59, 55–58 Van Stelten, Ann (author’s mother): death of 3 “Vulnerable subjects”: defined 5, 31–32, 139–148 war letters 180–189; gendering of 183 Washington, Essie Mae 73 Watson, Julia 64, 67 Wertz, Julia: The Infinite Wait 36, 49–51, 50 Whitman, Walt 2; “Song of Myself” 155–156; Specimen Days 156 Wilkomirski, Binjamin; see Dössekker, Bruno Williams, Ian 36–37 Woolman, John 2, 150–151 work of memoir 10–20; defined 14 Zimmerman, Lee 136