Read an Excerpt
Signifying bodies
Disability in Contemporary Life Writing
By G. Thomas Couser THE UNIVERSITY OF MICHIGAN PRESS
Copyright © 2009 University of Michigan
All right reserved. ISBN: 978-0-472-05069-7
Chapter One
Introduction The Some Body Memoir
In April 2002, in a lively review-essay entitled "Almost Famous: The Rise of the 'Nobody' Memoir" in the Washington Monthly, Lorraine Adams distinguished, usefully but also invidiously, between the "somebody memoir" and the "nobody memoir," according to whether the author is known before its publication or becomes known only through its publication. Thus, Hillary Clinton's Living History is a somebody memoir while Lucy Grealy's Autobiography of a Face is a nobody memoir. This difference entails another, of course: somebody memoirs have preexisting audiences created by the eminence of their authors, whereas nobody memoirs have to create their readership from scratch by means of marketing, reviews, and word of mouth. One could say, then, that although nobody memoirs may be new, they earn their readership the old-fashioned way-on their merits.
Based on a sample of more than 200 recent memoirs, Adams drew up a taxonomy of the nobody memoir; according to her, the most popular types are "in order of popularity" "the childhood memoir-incestuous, abusive, alcoholic, impoverished, minority, 'normal,' and the occasional privileged ... [;] the memoir of physical catastrophe-violence, quadriplegia, amputation, disease, death[;] ... and [the memoir of] mental catastrophe-madness, addiction, alcoholism, anorexia, brain damage" (para. 8). Note the emphasis on dysfunction in the first type of memoir, with normal and privileged childhoods trailing traumatic ones, and the fact that the other two types are characterized as narrating distinct kinds of catastrophe. If you're not somebody, it seems, your claim to public attention as a memoirist is strongest if you have had a tragic childhood or a past visited by traumatic injury, impairment, or illness.
The demographics of the nobody memoir shed a good deal of light on the memoir boom and the backlash against it. For these new, nobody memoirists are often young, female, and highly educated; many have earned MFAs in creative writing. It has become possible, even trendy, for women to produce memoirs before they reach the age of forty (or even thirty). Lucy Grealy is typical: after graduating from Sarah Lawrence, she was trained at the Iowa Writers'Workshop, and her first book was a memoir, Autobiography of a Face. Lauren Slater represents an extreme instance of this phenomenon: as we'll see in chapter 7, before turning forty, she had written four memoirs.
Another, less obvious demographic dimension of the nobody memoirist, however, may be more significant than these: two of Adams's three categories-what she terms physical and mental catastrophe-are, in effect, constituted by disability. Indeed, I would argue that those two are really one: while it may make intuitive sense, Adams's distinction between physical and mental "catastrophe" is difficult to maintain at a time when mental illness is increasingly seen as primarily a function of biochemistry. While Adams's distinction between the somebody and the nobody memoir helpfully illuminates the memoir boom, I wish to point out that, ironically but significantly, the new nobody memoir is also often the memoir of some body. Far more than the somebody memoir, the nobody memoir is often about what it's like to have or to be, to live in or as, a particular body-indeed, a body that is usually odd or anomalous. Less often, it's about living with, loving, or knowing intimately someone with such a body. (I will refer to the latter as somatography, the former as autosomatography, and the two together as auto/somatography.) And that means that the much-ballyhooed "memoir boom" has also been a boom in disability life writing, although publishers and reviewers rarely, if ever, acknowledge it as such.
In this regard as well, Lucy Grealy personified-literally embodied-the nobody/some body memoirist. From its title on, Autobiography of a Face is concerned with what it was like to live with a particular bodily configuration. Grealy had cancer of the jaw as a child; the initial treatment was significantly disfiguring, and over the course of her too-short life-she died in her late thirties-she had dozens of reconstructive surgeries. Her condition thus demonstrated both the potential and the limitations of contemporary medicine, which could save her from a cancer with a very high mortality rate but could never fully repair the damage to her face. Indeed, her facial disfigurement was largely iatrogenic, caused not so much by her cancer as by the medical treatment for it; moreover, cosmetic surgery on her face scarred other parts of her body, from which it scavenged tissue. So while biomedicine saved her life, it exacted a price literally in pieces of flesh.
Before the memoir boom, memoirs that foregrounded the life of the body were written mostly by movie stars (about their sex lives) or by sports stars (about their athletic feats), often with the help of collaborators. In the case of movie stars, the memoirists typically embody ideals of physical beauty; in the case of professional athletes, ideals of physical fitness or athletic skill-in short, the very sorts that people with disabilities (PWDs) sometimes refer to as "severely able-bodied." Such memoirs serve not merely to associate success and celebrity with outstanding beauty or coordination but also to suggest that exceeding physical norms is a reliable route to iconic cultural status. More to the point here, both sets of memoirs are by definition somebody memoirs, not some body memoirs. Only in the last quarter of a century or so have memoirs by anonymous individuals with anomalous bodies been widely read and critically acclaimed. This development powerfully contravenes the implicit message of the somebody memoir and of our popular culture generally.
Thus, the rise of the nobody/some body memoir represents a subtle but significant shift in the demographics and body politics of American life writing. Indeed, I consider the emergence of the some body memoir the most important development in American life writing in the last three decades or so and thus a cultural and historical phenomenon of great significance. Although it is not often recognized as such, eluding most critics' radar, disability has become one of the pervasive topics of contemporary life writing. This is especially true if we look for "life writing" beyond the most obvious site, literary memoir-for example, in that most ubiquitous and overlooked life-writing genre, the obituary (see chapter 8), and in documentary film (see chapter 4). Largely unheralded, auto/somatography has become one of the primary venues through which disability authorship has spread through North American public culture at the turn of the century. Its dissemination presents a new opportunity for enhancing disability literacy in the body politic.
This phenomenon of the some body memoir has two major dimensions, which are distinct but complementary. The first is that a few conditions-diseases or disabilities-have generated large numbers of narratives, in effect, literatures of their own. In Recovering Bodies: Illness, Disability, and Life Writing, I surveyed four such conditions-breast cancer, HIV/AIDS, deafness, and paralysis. I could easily have added three more: blindness, depression, and autism-four, if you consider addiction a medical condition or disability. (It qualifies as a disability under the Americans with Disabilities Act; that is, people with a history of substance abuse are part of the class protected against discrimination by the law.)
This surge in auto/somatography should be understood in the context of the civil rights movements of the last quarter of the twentieth century. Just as what we sometimes call the civil rights movement was paralleled by the proliferation and prominence of African American autobiography (e.g., by Claude Brown,Angela Davis, Eldridge Cleaver, and Malcolm X), the women's rights movement was accompanied by the emergence of breast cancer narratives. When my mother had breast cancer in the early 1960s, not a single published narrative was available to give her comfort, support, or guidance, but narratives of breast cancer proliferated in the 1980s (in the wake of Betty Rollin's 1976 book First, You Cry)-a function not of advances in the medical treatment of breast cancer, alas, but of women's assertion of control over their own bodies. Such control may not protect women from cancer, but their authorship of cancer narratives is related to their claiming autonomy as patients in determining their own treatment (and as citizens more generally).
Similarly, HIV/AIDS, a disease that simultaneously killed and outed so many gay men in the United States, inevitably manifested itself in life writing as well as in more overtly political arenas. The currency of AIDS narratives (and memoirs of gay lives generally) obviously benefitted, and benefitted from, the gay rights movement.
Accounts of deafness are clearly related to the assertion of Deaf Pride and Deaf Power by people who are Deaf with a capital D-that is, those whose primary language is American Sign Language and who consider themselves not disabled but culturally distinct from those who communicate primarily through spoken language. Accounts of paralysis are similarly related to the disability rights movement, whose major legal manifestation in the United States was the passage of the Americans with Disabilities Act in 1990, a civil rights law that made it illegal to discriminate against people with disabilities on the basis of those disabilities; in fact, the law requires public facilities to be accessible to PWDs and requires employers to accommodate their special needs. As PWDs have become more visible in the public sphere, public-ation of their lives is an apt, perhaps inevitable, cultural corollary. (Chapter 9, "Life Writing and Disability Law: Undoing Hardship," explores the complex and reflexive relations between the ADA and disability life writing.) The larger point, however, is that disability life writing has not sprung up in a cultural or legal vacuum but rather responded to, and helped to create, greater opportunity and access to public life.
Narratives of blindness, depression, and autism are less closely linked to particular minorities with distinct political agendas. But depression has become the paradigmatic mental illness of the postmodern period, and autism has become the paradigmatic developmental disability. All three conditions have been the focus of substantial numbers of narratives. Although initially autism was more often narrated by a parent (or sibling) than by the person with autism him- or herself, there have been so many recent first-person narratives by people with autism that they have been granted, or have claimed, their own generic term: autie-biography.
The other major aspect of the rise of the some body memoir is complementary to the first: many conditions-again, diseases, disabilities, or minor anomalies-have produced small numbers of memoirs. Some of these conditions are of relatively recent vintage, as modern biomedicine continues to proliferate diagnostic labels and to pathologize human variation; others, though long known, have never before been represented in nonscientific nonfiction, in particular in life writing. In this latter category of conditions are amputation (Andre Dubus), amyotrophic lateral sclerosis, or Lou Gehrig's disease (Albert B. Robillard), anorexia and other eating disorders (Marya Horn- bacher), Asperger's syndrome (Liane Holliday Willey), asthma (Timothy Brookes), bipolar illness (Terri Cheney), borderline personality disorder (Susanna Kaysen), cerebral palsy (Ruth Sienkiewicz-Mercer), chronic fatigue syndrome (Floyd Skloot), cystic fibrosis (Laura Rothenberg), deformity (Kenny Fries), diabetes (Lisa Roney), disfigurement (Lucy Grealy), epilepsy (Teresa McLean), locked-in syndrome (Jean-Dominique Bauby), multiple sclerosis (Nancy Mairs), Munchausen syndrome by proxy (Julie Gregory), obesity (Judith Moore), obsessive-compulsive disorder (Amy Wilensky), Parkinson's (Michael J. Fox), stuttering (Marty Jezer), stroke (Robert McCrum, May Sarton), and Tourette's syndrome (Lowell Handler).
More remarkable, conditions that might seem to preclude verbal self-representation have recently been given autobiographical expression: for example, aphasia (lack of speech, Helen Harker Wolf), Down syndrome (Jason Kingsley and Mitchell Levitz), and even early-stage Alzheimer's (Thomas DeBaggio, Diane Friel McGowin).
Auto/somatography also responds to recent scientific developments. In particular, the decoding of the human genome has made possible more definitive testing for risks of hereditary conditions. Thus, following the example of Alice Wexler's pioneering Mapping Fate: A Memoir of Family, Risk, and Genetic Research, which chronicles her mother's decline and demise from Huntington's disease and explores the questions that her lineage raises for her and her sister, others have explored these same issues with regard to other genetic conditions, including some types of breast and ovarian cancer (e.g., Jessica Queller). Such life writing, which we may call auto/genography, is notable for the way in which it inscribes a particular kind of biological relationality, exploring the way certain somatic conditions may be passed along from generation to generation-or not: such memoirs are often spurred by the hope that the genetic transmission can be arrested.
What links these books is the fundamental endeavor to destigmatize various anomalous bodily conditions. Disability memoir should be seen, therefore, not as spontaneous self-expression but as a response-indeed a retort-to the traditional misrepresentation of disability in Western culture generally. One can see why autosomatography is a particularly important form of life writing about disability: written from inside the experience in question, it involves self-representation by definition and thus offers an opportunity for personal revaluation of that condition. Disability autobiographers typically begin from a position of marginalization, belatedness, and pre-inscription. Long the objects of others' classification and examination, disabled people have only recently assumed the initiative in representing themselves; in disability autobiography particularly, disabled people counter their historical objectification (or even abjection) by occupying the subject position. The representation of disability in such narratives is thus a political as well as a mimetic act-a matter of speaking for as well as speaking about.
Not everyone welcomes the rise of the auto/somatography. In a review of my Recovering Bodies, a physician, A. M. Daniels, attributed the recent proliferation of narratives of illness and disability to "the death of humility as a social virtue"; he went on, "at one time, after all, only people of great or exceptional achievement, or with an extraordinary or exemplary tale to tell, would have written an autobiography." (The latter point may sound plausible, but it certainly has not been the case for the last couple of hundred years that only those of exceptional accomplishment have written autobiography; from its origins, modern memoir has always attracted scoundrels as well as paragons.) Daniels unapologetically favors the somebody memoir over the some body memoir. Notice, however, that Daniels does not frame his judgment in literary terms. In fact, he hadn't read the books in question; he just knew that he didn't want to. To Dr. Daniels, sick and disabled people are to be seen-preferably in the clinic-and not heard, and certainly not read. Conservative cultural critics like him may be quite outspoken in their efforts to perpetuate the silence of people with aberrant bodies. But autobiography can be an especially powerful medium in which disabled people can demonstrate that they have lives, in defiance of others' commonsense perceptions of them.
Indeed, disability autobiography may be regarded as a postcolonial-indeed, an anticolonial-phenomenon, a form of autoethnography, as Mary Louise Pratt has defined it: "instances in which colonized subjects undertake to represent themselves in ways that engage with [read: contest] the colonizer's own terms" (7). A text that demonstrates this particularly well is Susanna Kaysen's Girl, Interrupted, an account of her sojourn in a mental hospital. Kaysen astutely avoids ready-made narrative formulas and plots; instead of offering a linear account of her experience, she produces a collage of short chapters of distinct and very disparate types. Some are brief vignettes of herself or other patients; others are meditations on the inadequacy of medical terminology and hence the diagnosis of mental illness. (In her riff on her diagnosis of "borderline personality disorder," she makes the point that, as defined by the Diagnostic and Statistical Manual of Mental Disorders [DSM], many of its symptoms are features of adolescence as experienced by many young women, and I have found that reading the DSM definition aloud in class invariably stimulates nervous laughter.) Still others incorporate and interrogate the actual documents that effected her diagnosis, supervision, and discharge. Taken together, they challenge medical discourse and destabilize the commonsense distinction between the mad and the sane. Similarly, in chapter 6, I discuss Rachel Simon's Riding the Bus with My Sister, a memoir that, among other things, performs an act of autoethnographic advocacy for people with developmental disabilities.
(Continues...)
Excerpted from Signifying bodies by G. Thomas Couser Copyright © 2009 by University of Michigan . Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
