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Collection Highlights

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Managing Diabetes
Biopolitics: Medicine, Technoscience, and
H ealth in t he T w e n t y - Fi r st Cent u ry Seri es
General Editors: Monica J. Casper and Lisa Jean Moore
Missing Bodies: The Politics of Visibility Men at Risk: Masculinity, Heterosexuality,
Monica J. Casper and Lisa Jean Moore and HIV Prevention
Against Health: How Health Became the Shari L. Dworkin
New Morality To Fix or To Heal: Patient Care, Public
Edited by Jonathan M. Metzl and Health, and the Limits of Biomedicine
Anna Kirkland Edited by Joseph E. Davis and
Is Breast Best? Taking on the Breastfeeding Ana Marta González
Experts and the New High Stakes Mattering: Feminism, Science,
of Motherhood and Materialism
Joan B. Wolf Edited by Victoria Pitts-Taylor
Biopolitics: An Advanced Introduction Are Racists Crazy? How Prejudice, Racism,
Thomas Lemke and Antisemitism Became Markers
The Material Gene: Gender, Race, and of Insanity
Heredity after the Human Genome Project Sander L. Gilman and James M. Thomas
Kelly E. Happe Contraceptive Risk: The FDA, Depo-
Cloning Wild Life: Zoos, Captivity, and the Provera, and the Politics of
Future of Endangered Animals Experimental Medicine
Carrie Friese William Green

Eating Drugs: Psychopharmaceutical Personalized Medicine: Empowered

Pluralism in India Patients in the 21st Century
Stefan Ecks Barbara Prainsack
Phantom Limb: Amputation, Embodiment, Biocitizenship: On Bodies, Belonging, and
and Prosthetic Technology the Politics of Life
Cassandra S. Crawford Edited by Kelly E. Happe, Jenell Johnson,
and Marina Levina
Heart-Sick: The Politics of Risk, Inequality,
and Heart Disease Toxic Shock: A Social History
Janet K. Shim Sharra L. Vostral
Plucked: A History of Hair Removal Managing Diabetes: The Cultural Politics
Rebecca M. Herzig of Disease
Jeffrey A. Bennett
Contesting Intersex: The Dubious Diagnosis
Georgiann Davis
Managing Diabetes
The Cultural Politics of Disease

Jeffrey A. Bennett

NEW YORK UNIVERSIT Y PRESS

New York
NEW YORK UNIVERSIT Y PRESS
New York
www.nyupress.org
© 2019 by New York University
All rights reserved
References to Internet websites (URLs) were accurate at the time of writing. Neither the
author nor New York University Press is responsible for URLs that may have expired or
changed since the manuscript was prepared.
Library of Congress Cataloging-in-Publication Data
Names: Bennett, Jeffrey A. (Jeffrey Allen), 1974– author.
Title: Managing diabetes : the cultural politics of disease / Jeffrey A. Bennett.
Description: New York : New York University Press, [2019] | Includes bibliographical
references and index.
Identifiers: LCCN 2018041801| ISBN 9781479830435 (cl : alk. paper) | ISBN 9781479835287
(pb : alk. paper)
Subjects: LCSH: Diabetes—Treatment.
Classification: LCC RC660 .B386 2019 | DDC 616.4/62—dc23
LC record available at https://lccn.loc.gov/2018041801
New York University Press books are printed on acid-free paper, and their binding materials
are chosen for strength and durability. We strive to use environmentally responsible suppli-
ers and materials to the greatest extent possible in publishing our books.
Manufactured in the United States of America
10 9 8 7 6 5 4 3 2 1
Also available as an ebook
For Isaac,
who keeps life sweet
Contents

1. Critical Conditions 1

2. “HIV Is the New Diabetes”: Analogies of Apathy 42

3. Lethal Premonitions: Fatalism and Advocacy 77

4. Containing Sotomayor: Narratives of Personal Restraint 112

5. Troubled Interventions: “Epidemic” Logic and

Institutional Oversight 142

6. Cyborg Dreams 173

Acknowledgments 203

Notes 207

Index 239

About the Author 247

vii
1

Critical Conditions

Besides, I think that the cicadas, who are singing and carry-
ing on conversations with one another in the heat of the day
above our heads, are also watching us. And if they saw the two
of us avoiding conversation at midday like most people, di-
verted by their song and, sluggish of mind, nodding off, they
would have every right to laugh at us, convinced that a pair of
slaves had come to their resting place to sleep like sheep gath-
ering around the spring in the afternoon. But if they see us
in conversation, steadfastly navigating around them as if they
were Sirens, they will be very pleased and immediately give us
the gift from the gods they are able to give to mortals.
—Socrates, Plato’s Phaedrus, 259A–259E

As soon as you awake, the familiar pressure is there: Should

you write or not? Yes, no, maybe. You heave your body out of
bed, prick your finger, and squeeze a drop of blood onto the
glucose meter. You shoot insulin into your stomach, eat, go
for a walk. You concentrate on your feet touching the ground,
on the blue stretch of sky, the roar of crashing waves, the pun-
gent odor of guano. You listen to the environment as Don Juan
urged Castaneda to do. Searching for analogies to your bud-
ding ideas, you scan cypress trees with twisted trunks, a flock
of pelicans flying low over the water, breakers shooting up
the cliff walls like geysers.
—Gloria Anzaldúa, Light in the Dark/Luz en lo Oscuro

The song of the cicadas murmured through the streets of Bloomington,

Indiana in the summer of 2004. After 17 years hibernating under-
ground, the creatures extolled in Plato’s ode to rhetoric, madness, and
love trumpeted their return with harmonious fervor. I vividly remember

1
2 | Critical Conditions

walking past the trees that lined the path from Ballantine Hall to the
parking lot behind the Kinsey Institute, distracted by their rapturous
hymn. The cicadas’ ubiquitous and ethereal orchestration crescendoed
from a subtle whisper to an intense reverberation in a matter of steps.
They animated the branches by giving them a pulse, enlivening the
atmosphere with an energy that was somehow both electrifying and
soothing. The hum from the trees was nothing short of overwhelming,
imparting the feeling that at any moment they might conspire to over-
take the walkway and whoever happened to be occupying it. Though
invisible, they loomed large, effortlessly altering the scene with their
euphoric chorus.
In ancient Greece cicadas represented spiritual ecstasy, rebirth, and
immortality. Plato invokes the image of the cicadas in the Phaedrus
to symbolize both restraint and honor, narratively crafting a link be-
tween personal control and dignity. Plato’s protagonist Socrates tells his
companion, the book’s namesake Phaedrus, that they must resist the
song of the cicadas, not succumbing to laziness, but practicing restraint
against the pleasure-inducing cadence of the insects. Those familiar with
the text know that Socrates is obsessing over his libido more than he is
lauding some bugs in a plane tree. The storied philosopher reels in his
desires for the titillating youthfulness of Phaedrus as he advocates for
a disciplining of the passions and the virtue to be cultivated as a result.
Socrates hopes that the cicadas will relay to the Muses his moderation
and chaste disposition, and that he will be rewarded by Erato, the muse
of love, and Calliope, the muse of rhetorical eloquence. Desires con-
stantly encroach on Socrates, and he reproaches these temptations with
overt gestures of self-control.
The relationship between duty and pleasure, what scholars frequently
denote as hedonics, is a recurring theme in this book, which is dedicated
to the manifestation and circulation of diabetes rhetoric. The tension
between earthly desire and the platitudes of well-being is one I learned
firsthand when I was diagnosed with type 1 diabetes the same summer
the cicadas were resurrected in southern Indiana. Just a few weeks after
defending my dissertation (a study about the relationship between blood
and politics no less), the droning from the cicadas continued to stir as
I was hospitalized suddenly after lower-back pain left me unable to sit,
stand, or lay down comfortably. The pain was unlike anything I had ex-
 Critical Conditions | 3

perienced up to that point in my life and it still haunts me when I have

the slightest backache. Because I was unaware that I had onset diabetes,
my blood sugar was unregulated, inciting a condition known as ketoaci-
dosis. In short, my kidneys had begun shutting down. I was immediately
admitted to the ICU and spent a dizzying 48 hours immersing myself in
a new language, a new routine, and a new way of life.
There were plenty of signs that trouble was on the horizon in the
weeks leading up to my hospitalization, but they were not yet intelligible
as something that might signify disease, illness, or however we want
to classify diabetes in the medical order of things.1 For starters, I suf-
fered perpetual exhaustion. Having just finished a dissertation, landed
a job, and started the emotionally taxing task of finding a new home in
a distant city while saying good-bye to my grad school kin, including
my partner of just over a year at the time, I wrote off the fatigue as a
by-product of stress. I was also terribly moody. Although I am a reli-
ably easygoing person, I found myself regularly irritated. The hormonal
changes that accompanied diabetes’s awakening left me undone, conjur-
ing emotions that generally remained dormant in otherwise mundane
situations. I had also lost a good bit of weight, but I tended to exer-
cise frequently and was conscious of the scale, so again I attributed the
weight loss to stress. When the doctors told me that I weighed a mere
120 pounds as a 5-foot,10-inch-tall man approaching age thirty, I was
taken aback. The Greek word for diabetes translates to “siphon,” and the
disease was living up to its etymological signifier.
The weeks and months that followed diagnosis were accompanied by
a steep learning curve about diabetes care, but also a newly found ap-
preciation for gauging my body’s response to fluctuating circumstances.
Like all people with diabetes, I learned how to count carbohydrates, test
my blood sugar, and administer shots. The finger pricks and shots were
especially confounding, as I had lived for years with a pronounced pho-
bia of needles. So strong was this aversion that I refused local anesthetics
at the dentist’s office before having my teeth drilled for fillings. One of
the nurses working with me early in my diagnosis quipped, “A diabetic
who doesn’t like needles—how’s that working out for you?” Of all the
medical conditions that I could have landed, this one seemed decidedly
cruel, as if I was the butt of some cosmic joke. Clearly, the cicadas had
delivered bad news to the wrong muse.
4 | Critical Conditions

There were other complications that I could not foresee. Early on, my
pancreas was still producing trace amounts of insulin (a normal phe-
nomenon for those with type 1 diabetes) and when it interacted with
the insulin I was manually injecting, it caused me to have unusual bal-
ance problems. I remember on one job interview shortly after diagnosis
having a difficult time focusing on a senior scholar’s face as she posed
a question. Although I was supposed to be answering her inquiries
thoughtfully, I recall struggling to maintain composure and not embar-
rass myself during a dizzy spell. Driving and public speaking both be-
came precarious endeavors because any mild change in heart rate or
nerves left me unsure of whether my sugars were spiking or dropping
rapidly. A friend from graduate school warned my partner to monitor
me for depression, knowing that the first year after being diagnosed with
a disease, chronic or otherwise, can leave a person despondent. I never
pursued treatment or clarity about depression, worrying that any trace
of flexibility in my concept of self would suggest that I was unable to
contend with the multitude of changes I was juggling. Still, that first
year I slept more than was normal, I lost time in ways I never had, and
I became preoccupied with the life-altering ailments that awaited me.
Assurances that “there are worse diseases you could have” or “things
aren’t like they used to be” only made matters worse. In the years prior
to the Affordable Care Act, I also worried that formal recognition of
depression might be used against me in future health insurance mat-
ters. I grappled with the fallout of the diagnosis for years, consuming as
much information as I could about cures (and some scientist is always
curing some poor mouse of something), technological innovations, and
the prospects of a long and healthy life.
But what caught me most off guard in those first months were the
disturbing ways people in every realm of my life, from close friends
to complete strangers, communicated about diabetes. Even the most
well-intentioned conversations about diabetes quickly devolved into
recitations about the need to “take care” of myself, a variation of a
conventional narrative about personal responsibility and hard work.
The number of people who told me stories about relatives who had
diabetes, always in the past tense, was legion. On airplanes, in restau-
rants, during office hours, and at the gym (!) people implored me to
be attentive to my body. Although I rarely engaged with those who
 Critical Conditions | 5

attempted to discipline what I ate, what some people with diabetes call
“hand slapping,” I commonly heard about death, folks who went blind
from sugar irregularities, and the trope of the irresponsible diabetic who
threw to the wind any thought of deliberate management. Sometimes
the subjects of these cautionary tales were older men who had lost a foot
to diabetes. At other times they were teenagers who died while in high
school. One well-meaning relative told me the story of an acquaintance
who had gone blind before dying from diabetes-related complications.
Noticing the look of dismay on my face, she quickly added, “He was
a crack addict too, though.” Of course, these stories of loss are gener-
ally heart-wrenching for the people sharing them. They disclose their
experiences in the hopes that my loved ones and me might avoid the
pain they endured and the misfortunes they witnessed. Still, it is little
wonder that depression hits hard in the first year after diagnosis. On
the one hand, people with diabetes are told their disease is not so bad;
on the other hand, it is conveyed repeatedly as fatal. Deciphering which
messages are pertinent to the immediacy of one’s livelihood can be a
daunting undertaking when attempting to stay well.
Along with these dispiriting exchanges I was fast learning that vigi-
lance did not always produce the results that I presumed and most
certainly did not ensure the consistency narrativized about diabetes
by others. I’m about as predictable as a human being can be. And yet,
repetitive practices did not engender the effects typically described in
medical literature. Early in my diagnosis I discovered that the same rou-
tine could produce glucose readings that were 100–150 points apart.2
I found that diabetes management is not merely about counting carbo-
hydrates and administering insulin but is complicated by factors such as
a lack of sleep, stress, exercise, caffeine, and a host of idiosyncratic cir-
cumstances. As Annemarie Mol notes, in the logic of diabetes care, “no
variable is ever fixed.”3 People with diabetes can mind these variations,
but the plasticity of the disease is readily glossed over by those who have
rigid predispositions about its effects. Even worse, these personal com-
plexities can be dismissed as merely anecdotal.4
The inconsistent outcomes that emerged from my daily activities
stood in sharp contrast to the facts I was cultivating about diabetes.
Methodical patterns were supposed to produce steady results. When
that did not happen, I found myself internalizing feelings of shame for
6 | Critical Conditions

not having an appropriate amount of self-control. But, even more signif-

icant, I realized that while I was suffering a degree of mortification about
my increasingly unchecked numbers, I also had the sneaking suspicion
that this narrative about a lack of personal restraint would inevitably be
used to blame me for my own demise. I mean, how many of you have
attended a funeral where someone uttered the words, “he just didn’t
take care of himself.” I’ve been to more than a few. Couple that with the
fact that I have never been averse to sin and the recipe for scapegoating
was ripe. I could just picture the bereaved whispering at my wake, “You
know how much fast food he ate, don’t you?” “If Facebook is any indica-
tion, he always seemed to be drinking with friends.” “He was diagnosed
the day after eating at a Cheesecake Factory, what does that tell you?” It
is the casualness of dismissal that haunts me most when thinking about
diabetes rhetoric, the assumption that the care of the self is easily ex-
ecuted, even as nuanced understandings about the contours of “man-
agement” are elided. This paradigm is at best wickedly deceptive and at
worst callously malicious—just “take care of yourself ” and everything
else will fall into place. I find this discourse resoundingly dubious be-
cause lurking just below the surface is an acknowledgment that control
is achievable only after bracketing some of the most byzantine factors
related to healthy living—the sociality of eating, the high cost of fresh
food, the dark side of well-being regimens, and the mammoth and im-
penetrable nature of the healthcare system.5 The almost compulsive urge
to guide people’s behavior reveals that the constructed nature of “health”
can be just as diabolical as any disease.6
And I’ve got type 1 diabetes—the kind that supposedly lives free of
blame because it is technically an autoimmune disease and not attrib-
uted to diet or “lifestyle” choices. People with type 2 diabetes are damned
constantly by moralizers who insist their condition is one of their own
making. It is regularly assumed that people with type 2 diabetes ate too
much, exercised too little, and ultimately initiated their own downfall.
Although this is sometimes true, it is an oversimplification of a dynamic
chronic condition that is best addressed free of persecutory accusations.
Even among some type 1 communities there is a desire to rename one of
the two diseases and do away with the guilt by association that accom-
panies such noxious public judgments. If only the language that consti-
tutes diabetes could be made more transparent, the thinking goes, then
 Critical Conditions | 7

certainly we could escape disparaging glares and indelicate remarks, not

to mention make medical strides to cure both diseases.
This book argues against such thinking, contending that the sym-
bol system guiding diabetes rhetoric is, to borrow a phrase from Paula
Treichler, marked by a crisis of signification.7 Disparate visions of dia-
betes and its management circulate unceasingly and inharmoniously
in public culture, contributing to a confusion, if not opaque mystifica-
tion, about the disease. Depending on the source, diabetes might be
imagined as an “epidemic” that necessitates government interference
and multilevel task forces. For others, it is not so much a biopolitical
question of state regulation, but the failure of individuals to exercise
self-discipline. In some outlets, diabetes is positioned as thoughtlessly
managed by swallowing a pill or programming a pump. In still other
locations the disease is conceived as a dire state-of-being, a slow death
that imperceptibly foments bodily decay. Diabetes is a banal and gradual
disease, but couched recurrently in metaphors stressing war, natural di-
saster, addiction, and criminality. It is sometimes heralded as a product of
nature, sometimes nurture, and sometimes both. In the medical literature,
diabetes’s catalyst is itself unknown, attributed to everything from viruses
to gut bacteria to hormones to environmental toxins to some combina-
tion thereof.8 Healthcare workers extol the promise of new innovations,
such as insulin pumps, but also expend much energy worrying that people
will attach such devices without reflection and abandon their duties of
self-care. These contradictions occlude the fact that the paths to making a
better life with diabetes are as diverse as the people who live with it.
This text does not strive to solve the inherent contradictions that
organize diabetes’s strange public life. Rather, I look to the trope of
management as an instance of condensation, in the rhetorical sense,
that helps to smooth over the discrepancies that mark the ways diabe-
tes is made intelligible.9 Put another way, management operates as a
shorthand for multiple rhetorics that deal with sociality, relationality,
food consumption, institutional support, ideologies of health, medi-
cal directives, and, perhaps most important, moral worth. Entering
the labyrinth of diabetes management reveals its contours to be more
serpentine than transparent, riddled with discrepant messages and in-
commensurable impulses. Giving attention to diabetes’s puzzling inco-
herencies can trouble visions of self-sovereign subjects endowed with
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