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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 rela-
tionships 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 repre-
sentation—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 (liter-
ary 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 expres-
sion 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 signifi-
cant 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 rela-
tionships. 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
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 ix
Acknowledgements xi
Index 190
Illustrations
For a book like this, coming at the end of my career and surely my last,
acknowledgments must be especially capacious and inevitably incom-
plete: 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 autobiogra-
phy 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 dis-
sertation, 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 mem-
oir) is often haunted, even impelled, by the authors’ awareness of the
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*
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 dis-
ability. 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 crit-
ics, 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 pub-
lished 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 recon-
structive 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 num-
bers of narratives. Some of these conditions are of relatively recent vin-
tage, 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, prosopag-
nosia (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 con-
ditions—breast cancer, HIV/AIDS, deafness, and paralysis. I could eas-
ily 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 func-
tion 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 sub-
jects of memoirs to the set of subjects contained in a reference work
like the Dictionary of American Biography. Subjects included in such dic-
tionaries 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, col-
lectively, 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*
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 quali-
tative, 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 impor-
tance 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 sig-
nificant 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 non-
disabled 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 well-
being, 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 abnormali-
ties. 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 intro-
duce the fundamental, if somewhat counterintuitive, distinction made in
disability studies between impairment and disability. Traditionally, dis-
ability has been viewed under the “medical paradigm,” which patholo-
gizes 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, infe-
rior, 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 activ-
ism aimed at reforming society to minimize disadvantages posed by the
environment to people with unusual bodies. Under this paradigm, “impair-
ment” 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 comple-
mentary, 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 sub-
jective 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 main-
tains an emotional homeostasis through life’s ups and downs, adjusting
to radical changes in personal circumstances. The bad news is that win-
ning 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 dis-
abled people’s surprisingly high reports of their quality of life. That is, it
resolves the “disability paradox.” In my view, this corroboration consti-
tutes a real advance in the study of disability—a truly big deal. Ideally,
dissemination of these findings would reduce the gap between nondis-
abled 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 focus-
ing illusion (Amundson 8–9). This comes into play when experimental
subjects have their attention directed to a single factor when rating qual-
ity of life. For example, one experiment asked students to rate their qual-
ity 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 fre-
quency. 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 dis-
abled 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 move-
ment over at least the last half-century, culminating in the current “mem-
oir 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 mis-
fortune, and are often asked bluntly by complete strangers: “What hap-
pened 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 domi-
nant groups, disabled people come to literary production from within
the same culture that marginalizes them; they are vulnerable to infec-
tion 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 representa-
tion: to offer compelling counter-representation. The challenge is to do
this without deploying rhetorics already in circulation that simply rein-
force 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 move-
ment, 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, counterdiscur-
sive 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 accom-
panied 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 previ-
ously 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 “selec-
tion” of these conditions is worth investigation, because it is not the case
that the most deadly and dangerous conditions produce the most narra-
tives. If it were, women would write more narratives of lung cancer than of
breast cancer. Similarly, there are relatively few narratives of common con-
ditions 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 narra-
tives 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 narra-
tives of nearly 100 distinct conditions. And the book does not claim to be
exhaustive. So, today, at least in North America, having an unusual impair-
ment 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 distin-
guishing 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 psy-
chological 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 fic-
tion 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 nar-
ratives 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 mak-
ing 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 nondis-
abled 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 cere-
bral 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, ware-
housed. 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 Sienkiewicz-
Mercer’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 sub-
mit it to her for her approval.
Methods like these, while complicated, labor-intensive, and time-consum-
ing, 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 com-
munication 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 “autobiog-
raphy,” 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 non-
disabled children are the subjects of such memoirs. Disabled children
are doubly disadvantaged, by their junior status and by their disabil-
ity; 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 rais-
ing 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 deval-
ued his own son’s life by presenting him as the poster child for a pre-
ventable disability.
A more positive scenario involving a subject with a cognitive impair-
ment is Rachel Simon’s Riding the Bus with My Sister (2002). After hav-
ing 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 travel-
ing in circles. Beth relished the companionship of the drivers, most of
whom welcomed her presence aboard. Rachel credits her sister with hav-
ing 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 indepen-
dent living, learning what support services she uses, and reconciling her-
self 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 mem-
oir 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 com-
mon 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.
Random documents with unrelated
content Scribd suggests to you:
healthy contrast to the sordid sensuality of some of his successors,
his wife contrasts no less luminously with later Empresses, and is no
less unjustly accused of cunning. How far she developed ambition in
later years we shall consider later. In the fullness of his manhood, at
least, she was content to be the wife of Octavian. With her own
hands she helped to spin, weave, and sew his everyday garments.
She carefully reared her two boys, tended the somewhat delicate
health of Octavian, and cultivated that nice degree of affability which
kept her husband affectionate and the husbands of other noble
dames respectful. Dio would have us believe that her most useful
quality was her willingness to overlook the genial irregularities of
Octavian; but Dio betrays an excessive eagerness to detect frailties
in his heroes and heroines. We have no serious evidence that
Octavian continued the loose ways of his youth after he married
Livia. The plainest and soundest reading of the chronicle is that they
lived happily, and retained a great affection for each other, even
when fate began to rain its blows on their ill-starred house.
But before we reach those tragic days, we have to consider
briefly the years in which Octavian established his power. His first
step after his marriage with Livia was to destroy the power of the
Pompeians. Livia followed the struggle anxiously from her country
villa a few miles from Rome. Sextus Pompeius was experienced in
naval warfare, and, as repeated messages came of blunder and
defeat on the part of Octavian’s forces, she trembled with alarm. Her
confidence was restored by one of the abundant miracles of the
time. An eagle one day swooped down on a chicken which had just
picked up a sprig of laurel in the farm-yard. The eagle clumsily
dropped the chicken, with the laurel, near Livia, and so plain an
omen could not be misinterpreted. Rumour soon had it that the
eagle had laid the laurel-bearing chick gently at Livia’s feet. As in all
such cases, the sceptic of a later generation was silenced with
material proof. The chicken became the mother of a brood which for
many years spread the repute of the village through southern Italy;
the sprig of laurel became a tree, and in time furnished the
auspicious twigs of which the crowns of triumphing generals were
woven.
Whether it was by the will of Jupiter, or by the reinforcement of
a hundred and fifty ships which he received from Antony, Octavian
did eventually win, and, to the delight of Rome, cleared the route by
which the corn-ships came from Africa. Only two men now remained
between Octavian and supreme power—the two who formed with
him the Triumvirate which ruled the Republic. The first, Lepidus, was
soon convicted of maladministration in his African province, and was
transferred to the innocent duties of the pontificate, under
Octavian’s eyes, at Rome. Octavian added the province of Africa to
his half of the Roman world, and found himself in command of forty-
five legions and six hundred vessels. Fresh honours were awarded
him by the Senate, in which his devoted friend Mæcenas, who
foresaw the advantage to Rome of his rule, was working for him.
Then Octavian entered on his final conflict with Mark Antony. I
have already protested against the plausible view that Octavian was
pursuing a definite ambition under all his appearance of simplicity.
Circumstances conspired first to give him power, and then to give
him the appearance of a thirst for it. He really did not destroy
Antony, however: Antony destroyed himself. The apology that has
been made for Cleopatra in recent times only enhances Antony’s
guilt. It is said that she used all that elusive fascination of her
person, of which ancient writers find it difficult to convey an
impression, all her wealth and her wit, only to benumb the hand that
Rome stretched out to seize her beloved land. The theory is not in
the least inconsistent with the facts, and it is more pleasant to
believe that the last representative of the great free womanhood of
ancient Egypt sacrificed her person and her wealth on the altar of
patriotism than that her dalliance with Antony was but a languorous
and selfish indulgence in an hour of national peril. But if it be true
that Cleopatra was the last Egyptian patriot, Antony was all the more
clearly a traitor to Rome. The quarrel does not concern us. Octavian
induced the Senate to make war on Egypt; and we can well believe
that when, in a herald’s garb, he read the declaration of war at the
door of the temple of Bellona, the thought of his despised sister
added warmth to his phrases. The pale, patient face and outraged
virtue of Octavia daily branded Antony afresh in the eyes of Rome.
Livia and Antonia followed the swift course of the last struggle
from Rome. They heard of the meeting of the fleets off Actium, the
victorious swoop of Octavian, the flight of Antony and Cleopatra.
What followed would hardly be known to Livia. It is said that
Cleopatra offered to betray Antony to Octavian, and such an offer is
in entire harmony with the patriotic theory of her conduct. While his
able but ill-regulated rival, deserted by his forces, drew near the
edge of the abyss, Octavian visited Cleopatra in her palace. Her
seductive form was displayed on a silken couch, and from the slit-
like eyes the dangerous fire caressed the young conqueror. Cleopatra
probably relied on Octavian’s weakness, but his sensuous impulses
were held in check by a harder thought. He felt that he must have
this glorious creature to adorn his triumph at Rome. Cleopatra saw
that she had failed, and she went sadly, with a last dignity, before
the throne of Osiris. Octavian returned to Rome with the immense
treasures of Egypt, to enjoy the triumph I have already described
and to await the purple.
The domestic life of Livia and Octavian lost none of its plainness
after the attainment of supreme power. Some time after the Senate
had (27 B.C.) strengthened his position by inventing for him the title
of “Augustus”—a title by which he is generally, but improperly,
3
described in history after that date —he removed from the small
house which his father had left him to a larger mansion, built by the
orator Hortensius, on the Palatine. This was burned down in the year
6 B.C., and the citizens built a new palace for Livia and Octavian by
public subscription. At the Emperor’s command the contribution of
each was limited to one denarius. If we may trust the archæologists,
it was modest in size, but of admirable taste, especially in the
marble lining of its interior. On one side it looked down, over the
steep slope of the hill, on the colonnaded space, the Forum, in which
the life of Rome centred. On the other side it faced a group of public
buildings, raised by Octavian, which impressed the citizens with his
liberality in the public service. The splendid temple of Apollo, the
public library and other buildings, adorned with the most exquisite
works of art that his provincial expeditions had brought to Rome,
stood in fine contrast to his own plain mansion, of which the
proudest decoration was the faded wreath over the door—the
Victoria Cross of the Roman world—which bore witness that he had
saved the life of a citizen.
In this modest palace Livia reared her two children in the finer
traditions of the old Republic, while Octavian made the long journeys
into the provinces which filled many years after his attainment of
power. Livia was no narrow conservative. She took her full share in
the decent distractions of patrician life, and, like many other noble
women of the period, she built temples and other edifices of more
obvious usefulness to the public. A provincial town took the name
Liviada in her honour. We have many proofs that she was consulted
on public affairs by Octavian, and exercised a discreet and
beneficent influence on him. One of the anecdotes collected by later
writers tells that she one day met a group of naked men on the
road. It is likely that they were innocent workers or soldiers in the
heat, and not the “band of lascivious nobles” which prurient writers
have made them out to be. However, Octavian impetuously
demanded their heads when she told him, and Livia saved them with
the remark that, “in the eyes of a decent woman they were no more
offensive than a group of statues.” On another occasion she
dissuaded Octavian from executing a young noble for conspiracy. At
her suggestion the noble was brought to the Emperor’s private
room. When, instead of the merited sentence of death, Cinna
received only a kindly admonition, an offer of Octavian’s friendship,
and further promotion, he was completely disarmed and won. We
shall see further proof that the wise and humane counsels of Livia
contributed not a little to the peace and prosperity which Rome
enjoyed in its golden age.
LIVIA AS CERES
STATUE IN THE LOUVRE
I
N tracing the further career of Livia we enter upon the opening
acts of the tragedy of the Cæsars, and we have to consider
carefully if there be any truth in the charge that Livia herself
initiated the long series of murders that now make a trail of blood
over the annals of Rome. With the coming of the Empire we more
rarely find legion pitted against legion in the horrors of civil war, but
we have nerveless ambition stooping to the despicable aid of the
poisoner, autocracy paralysing the best of the nobility with its
murderous suspicions, and folly growing more foolish with the
increasing splendour of the imperial house. We already know that
the germs of this disease were found in the quiet home of Livia and
Octavian on the Palatine. Scribonia had received her letter of divorce
a few days after the birth of her daughter Julia. As Livia bore no
direct heir to the Emperor, while Julia became the mother of many
children, we have at once the promise of a dramatic struggle for the
succession. When we further learn that the strain of Imperial blood,
which takes its rise in Julia, is thickly tainted with disease, we are
prepared for a bloody and unscrupulous conflict. And when we
reflect that on this unstable pivot the vast Empire will turn for many
generations, we begin to understand the larger tragedy of the fall of
Rome.
NOTE
For the guidance of the general reader it is advisable to
add a few words on the Latin authorities, whom we now
constantly quote. Tacitus, the chief source of our knowledge
down to the year 70 A.D., is not only weakened as an historian
by the very strength of his morality, but he has too lightly
followed the memoirs in which the later Agrippina defamed
the rival Imperial family. Suetonius, who takes us as far as
Domitian, is no less honest, but he has too genial and
indulgent a love of anecdotes to discard any on the mere
ground that they are untrue or improbable. Dio Cassius, who
covers the first two centuries, is usually described as
malignant; but one may question if he does more than
indulge still further the same amiable preference of piquancy
to truth. The “Historia Augusta,” which is our chief authority
for the greater part of the Empresses and the richest source
of scandal, has been much and profitably discussed since
Gibbon placed such reliance on it. It is now thought by some
experts that the original writers of this series of biographical
sketches of the Roman Emperors lived at the beginning of the
third century, and had a comparatively sober standard of
work. Toward the close of the third, or beginning of the
fourth, century the work was written afresh by the group of
less scrupulous writers whose names, or pseudonyms,
actually stand at the head of its chapters. But a still later
writer once more recast the work, and lowered its authority.
He wrote frankly from the point of view of the piquant
anecdotist, omitting much that would interest only the prosy
student of exact facts, and filling up the vacant space with
such faint legends of Imperial vice or folly as still, in his time,
lingered without the pale of history, or arose in the field of
romance. The question is fully discussed by Otto Schultz,
“Leben des Kaisers Hadrian” (1905), and Professor
Kornemann, “Kaiser Hadrian” (1906).