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Sick cinema: illness, disability and the moving image

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Sick cinema: illness, disability and the moving image

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Content SICK CINEMA:
ILLNESS, DISABILITY AND THE MOVING IMAGE
by
Emma Ben Ayoun
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(CINEMATIC ARTS (CRITICAL STUDIES))
August 2022
Copyright 2022 Emma Ben Ayoun
ii
Acknowledgments

First, I would like to acknowledge my profound gratitude to my dissertation committee. Thank
you endlessly to the brilliant and kind Akira Mizuta Lippit, who invited me into his office in
2015 and convinced me to attend USC. I have found myself so enriched and energized by every
one of our office meetings since. Thank you to Tania Modleski, whose work thrilled and inspired
me at the very start of my studies, who taught the most wonderful seminar I ever took part in,
and whose lasting friendship and support has been one of the great gifts of my graduate career.
Thank you to Ellen Seiter, whose brilliant teaching and thoughtful reading of my work in its
earliest stages have been immeasurably helpful, and to Michael Renov, whose singular mind and
great warmth have helped me bring this project into places I never would have imagined it could
go. Thank you also to Kara Keeling, who served on my qualifying exams committee, and whose
brilliant questions, then and elsewhere, have deeply shaped my work. To have felt trusted and
supported in my work by people I so admire, intellectually and personally, has been a true
blessing.

I thank JD Connor for his incredible helpfulness, humor, and patience; Lan Duong, Aniko Imre
and Julie Van Dam for their great mentorship in teaching; Priya Jaikumar for her thoughtfulness,
warmth, and support; Christine Acham and Luci Marzola for their ongoing and often life-saving
assistance; and the entire USC Cinema and Media Studies Department for supporting my work
and being such an exciting and welcoming space in which to learn these past 7 years. I extend
my thanks also to Vanessa Schwartz and the Visual Studies Research Institute, as well as Karen
iii
Tongson and the Department of Gender and Sexuality Studies. It has been a great honor to be in
community with you.

I am very grateful to Cory Elizabeth Nelson and Roger Anderson, my supervisors at USC’s
Writing Center, who have made me a better teacher, writer, and thinker in so many ways, and
whose joyful, caring presence has made so many of the challenging parts of this process
bearable. I am grateful to Andrew Klevan and Reidar Due, my wonderful supervisors during my
master’s degree at Oxford, as well as Ara Osterweil, Ned Schantz, and Hasana Sharp, three
brilliant professors at McGill, without whom none of this would have happened. Every time I
walk into my own classroom, I feel their presence. I hope one day to teach with such wisdom,
clarity, and grace. I thank the many wonderful people I met at LA’s Feminist Center for Creative
Work and Pieter Dance Space for allowing me the opportunity to teach, think, and work outside
of the academy, to share my work with others and to grow creatively.
*
In personal acknowledgments, I would like to begin with my grandmother, 99 years old at the
time of this writing, who stayed up until extremely far past my bedtime with me as a child
watching movies from the 1930s and 40s that she had recorded herself onto blank VHS tapes,
when they aired on cable television, and painstakingly organized into a vast personal collection
that filled the front room of her house in the Bronx. My love of cinema started there, in those late
nights together, and I feel so lucky to share this milestone with her.

Everything I do is for my parents, who have supported me through every step of this process, as
they would have through any process, and as they do and have done every day of my life.
iv
Among endless other things, they taught me that learning is an end in itself, that teaching, like
living, is first and foremost an act of service, and that a curious, open and loving mind can keep
things interesting forever. To thank them is to barely skim the surface of my feeling, but it will
have to do for now. I am also so grateful to my brother, Julian, whose intelligence and wit are
matched only by his uniquely big heart. I feel so fortunate to have grown up talking to (and
debating with) you three, and can’t wait to keep talking, as we all tend to do, forever.

I also want—need—to thank my friends, who make everything meaningful and worthwhile. I
could not have asked for a better collaborator and co-conspirator (and frequent commiserating
partner) than Eszter Zimanyi, whose brilliant, honest, inquisitive mind inspires me always, and
whose generosity—whose deep instinct to share with those she loves, to lift up those around her
alongside her own ever-rising star—is unparalleled and incredibly special. In order to avoid
making my acknowledgments the same length as my dissertation itself, I will try to be brief, to
my great chagrin: I thank Alex Hack, a true kindred spirit, for many long and perfect evenings in
Playa Vista, Ana Howe Bukowski, who is the text man, and who truly understands the
importance of talking about the weather, Haley Hvdson for her perpetual thoughtfulness and
grace and perfect playlists, Nicholas Beck, Sayantan Mukhopadyay, Sasha Crawford-Holland,
and Adam Gill for their great friendship, love, care, humor, and intellectual companionship (and
walks, phone calls, martinis). Knowing you are there has made graduate school not only
survivable but great fun. I thank Madeline Meyer, Dan Colanduno, Martha Orchard and Gleb
Wilson for, among other things, the stimulating and joyful conversations that have sustained me
in my writing and thinking more than I could ever express. I am forever grateful to Adrian
Merrick, Maia Sanchez-Acero and Mariana Veras, my beloved friends and daily interlocutors for
v
twenty years now, whose weird and wonderful minds have indelibly shaped my own, and who
have been a true lifeline, every day, in every way.

I thank Connie, a cat quite unlike any other, for her perfect companionship throughout this entire
process. Connie reminds me both that the world is always bigger than my own temporary
anxieties and that, at the same time, the entire universe can be contained in the love between any
two of its creatures. I know she will never read this, but I hope she will sit on it.

To Jacob Goldman, who has changed my life completely: your mind and your heart are the most
beautiful and generous I have ever known. Thank you for thinking with me, for sitting across
from me, for writing to me, for unlocking so much in my thinking and writing, for making this
project and the whole world feel possible and alive; thank you for the thrill of your presence that
fills my every moment, that fills these pages, too. I write to you, as I do everything else.

And to Claire Jelinek, my best friend in the whole world and the funniest, most giving, most
insightful person alive, who has been with me from the start of this process, who has held me
through tears big and small, who has taught me more than anyone else ever could about
friendship, about care, about patience, about home, about love: I dedicate this to you. I love you.

vi
Table of Contents

Acknowledgments ............................................................................................................... ii

List of Figures .................................................................................................................... vii

Abstract ................................................................................................................................ x

Introduction ......................................................................................................................... 1

Chapter 1: Suddenly, I find myself feeling sick ................................................................ 31

Chapter 2: Bodies in water: disability cinemas and creatures of the sea ........................ 103

Chapter 3: In the absence of light, did they hear the blast of trumpets? ........................ 152

Chapter 4: The helpless longing of a ghost .................................................................... 224

Conclusion ...................................................................................................................... 278

Bibliography .................................................................................................................... 282

vii
List of Figures

Figure 1. Carol at the hair salon (Safe, 1995, Todd Haynes) ............................................ 31
Figure 2. Carol's hair (Safe) ............................................................................................... 32
Figure 3. Carol's perm (Safe) ............................................................................................. 33
Figure 4. Carol sees herself in the mirror (Safe) ............................................................... 34
Figure 5.Carol's nosebleed begins (Safe) ........................................................................... 34
Figure 5. Carol notices her nosebleed (Safe) ..................................................................... 35
Figure 7. Back in Carol’s bedroom (Safe) ......................................................................... 35
Figure 8. Detectives Takabe and Sakuma discuss the case (Cure, Kurosawa, 1997) ....... 37
Figure 9. Mamiya at the hospital (Cure) ........................................................................... 38
Figure 10. Mamiya meets a young doctor (Cure) ............................................................. 39
Figure 11. Mamiya turns from the doctor (Cure) .............................................................. 39
Figure 12. Water spills across the floor (Cure) ................................................................. 40
Figure 13. The doctor is entranced (Cure) ........................................................................ 41
Figure 14. The water continues across the floor (Cure) .................................................... 41
Figure 15. Carol sits at the psychiatrist’s office (Safe) ..................................................... 56
Figure 16. Carol sees herself in the mirror (Safe) ............................................................. 57
Figure 17. Carol touches her hair (Safe) ............................................................................ 58
Figure 18. Carol slides open the door (Safe) ..................................................................... 58
Figure 19. Takabe visits Mamiya in the hospital (Cure) ................................................... 67
Figure 20. Mamiya talks back (Cure) ................................................................................ 68
Figure 21. Mamiya and Takabe talk (Cure) ...................................................................... 69
Figure 22. Takabe’s outburst (Cure) ................................................................................. 70
Figure 23. Takabe enters the chamber (Cure) ................................................................... 70
Figure 24. Dirty water leaks across the table’s surface (Cure) ......................................... 71
Figure 25. An empty beach (Cure) .................................................................................... 73
Figure 26. A stranger sees someone (Cure) ...................................................................... 74
Figure 27. It is Mamiya (Cure) .......................................................................................... 74
Figure 28. The young doctor sees the ominous X (Cure) ................................................. 79
Figure 29. Carol in her home (Safe) .................................................................................. 82
Figure 30. Carol in the couch store (Safe) ......................................................................... 83
Figure 31. Carol visits a friend (Safe) ............................................................................... 83
Figure 32. Carol in the front garden (Safe) ........................................................................ 84
Figure 33. Carol inhales fumes (Safe) ............................................................................... 86
Figure 34. The view from Carol’s car (Safe) ..................................................................... 87
Figure 35. A flier at Carol’s gym (Safe) ............................................................................ 90
Figure 36. The view from Carol’s car at night (Safe) ........................................................ 92
Figure 37. Takabe’s wife at the doctor’s office (Cure) ..................................................... 93
Figure 38. Carol sleepwalks in her backyard (Safe) .......................................................... 94
Figure 39. Takabe in the interrogation room (Cure) ......................................................... 95
Figure 40. A polaroid of Takabe (Cure) ............................................................................ 95
Figure 41. Takabe considers his own image (Cure) .......................................................... 96
Figure 42. Carol rises from the bed in her cell (Safe) ..................................................... 100
Figure 43. Carol gazes out at us (Safe) ............................................................................ 101
Figure 44. Stephanie faces the orca (Rust and Bone, Jacques Audiard, 2012) ............... 106
viii
Figure 45. Stephanie gestures to the orca (Rust and Bone) ............................................. 107
Figure 46. Blood on the floor of the government facility (The Shape of Water, Guillermo del
Toro, 2017) ...................................................................................................................... 108
Figure 47. Elisa meets the amphibian man (The Shape of Water) .................................. 109
Figure 48. Shapes in the sand (The Piano, Jane Campion, 1993) ................................... 112
Figure 49. Elisa signs (The Shape of Water) ................................................................... 120
Figure 50. Zelda reacts to Elisa’s signing (The Shape of Water) .................................... 120
Figure 51. Elisa’s bedroom, filled with water (The Shape of Water) .............................. 131
Figure 52. Elisa and the amphibian man make love (The Shape of Water) .................... 135
Figure 53. Stephanie is projected on the screen at Marineland (Rust and Bone) ............ 140
Figure 54. Stephanie’s accident (Rust and Bone) ............................................................ 142
Figure 55. Ali helps Stephanie float (Rust and Bone) ..................................................... 144
Figure 56. Stephanie rides on Ali’s back (Rust and Bone) .............................................. 145
Figure 57. Stephanie practices her hand signals (Rust and Bone) ................................... 147
Figure 58. Elisa lines up eggs for the amphibian man (The Shape of Water) ................. 149
Figure 59. A promotional image for Derek Jarman's Blue, featured on the website of the Getty
Center in Los Angeles, 2016 ........................................................................................... 153
Figure 60. A performance of a segment of Alison O'Daniel's The Tuba Thieves at Los Angeles
Nomadic Division, 2018 .................................................................................................. 156
Figure 61. The Tuba Thieves at the Hammer Museum, Los Angeles ............................. 179
Figure 62. From “The Kaleidoscopic Window” .............................................................. 182
Figure 63. From “The Kaleidoscopic Window” .............................................................. 183
Figure 64. From “The Plants are Protected” ................................................................... 201
Figure 65. From “The Plants are Protected” ................................................................... 202
Figure 66. From “The Plants are Protected” ................................................................... 202
Figure 67. From “The Plants are Protected” ................................................................... 203
Figure 68. From “The Plants are Protected” ................................................................... 204
Figure 69. From “The Plants are Protected” ................................................................... 204
Figure 70. From “The Plants are Protected” ................................................................... 208
Figure 71. From “The Plants are Protected” ................................................................... 208
Figure 72. From “The Plants are Protected” ................................................................... 209
Figure 73. From “The Plants are Protected” ................................................................... 209
Figure 74. From “The Plants are Protected” ................................................................... 210
Figure 75. From “The Plants are Protected” ................................................................... 210
Figure 76. From “Hearing 4’33”” ................................................................................... 214
Figure 77. From “Hearing 4’33”” ................................................................................... 214
Figure 78. From “Hearing 4’33”” ................................................................................... 215
Figure 79. From “Hearing 4’33”” ................................................................................... 216
Figure 80. From “Hearing 4’33”” ................................................................................... 216
Figure 81. From Mel Baggs’ “In My Language” (2007) ................................................ 220
Figure 82. The protagonist of Ikiru has died (Ikiru, Akira Kurosawa, 1952) ................. 226
Figure 83. Watanabe's stomach, seen in an X-ray (Ikiru) ............................................... 230
Figure 84. The narrator speaks of Watanabe’s stomach (Ikiru) ...................................... 231
Figure 85. A message from Tom to Mark (Silverlake Life, Peter Friedman, 1993) ........ 233
Figure 86. One of Tom’s X-Rays (Silverlake Life) ......................................................... 234
Figure 87. An intertitle at the start of Modesty and Shame (Modesty and Shame, Hervé Guibert,
ix
1992) ................................................................................................................................ 235
Figure 88. A second intertitle announces Guibert’s death (Modesty and Shame) ........... 236
Figure 89. Hervé’s friend carries him on the beach (Modesty and Shame) ..................... 245
Figure 90. Hervé feeds his elderly aunt her dinner (Modesty and Shame) ...................... 251
Figure 91. A suicide attempt (Modesty and Shame) ........................................................ 254
Figure 92. Waiting (Modesty and Shame) ....................................................................... 255
Figure 93. We meet Watanabe (Ikiru) ............................................................................. 257
Figure 94. Mark looks at the medical form (Silverlake Life) .......................................... 258
Figure 95. The medical form (Silverlake Life) ................................................................ 258
Figure 96. Hervé sits by the phone (Modesty and Shame) .............................................. 259
Figure 97. Hervé touches his papers (Modesty and Shame) ............................................ 260
Figure 98. Photos of Mark’s lesions (Silverlake Life) ..................................................... 262
Figure 99. Mark photographed in the doctor’s office (Silverlake Life) ........................... 263
Figure 100. Hervé’s surgery (Modesty and Shame) ........................................................ 264
Figure 101. Watanabe realizes he has cancer (Ikiru) ....................................................... 265
Figure 102. Mark holds Tom’s ashes (Silverlake Life) ................................................... 267
Figure 103. Tom next to a photograph of himself with Mark (Silverlake Life) .............. 269
Figure 104. Watanabe’s new hat (Ikiru) .......................................................................... 270
Figure 105. The hat after Watanabe’s death (Ikiru) ........................................................ 271
Figure 106. Hervé reads outside in his hat (Modesty and Shame) .................................. 272
Figure 107. The hat on the dining room table (Modesty and Shame) ............................. 273
Figure 108. The empty swings (Ikiru) ............................................................................. 274
Figure 109. A clothesline in the wind (Modesty and Shame) .......................................... 275
Figure 110. A marathon seen from above (Modesty and Shame) ................................... 276
Figure 111. A marathon seen from the ground (Silverlake Life) ..................................... 277

x
Abstract
Across this dissertation, I investigate the connections between sickness and bodily
difference, and more specifically physical illness and physical disability, and the mysteries of the
cinematic image. I understand this project as a critical intervention in several fields—particularly
film theory, visual studies, and disability studies—that allows me to investigate their shared and
mutually useful interest in the way that the ailing or aberrant physical body both represents, that
is, its metaphoric functions, and is represented, is turned into an image and a site of knowledge.
What I argue is twofold: first, that disability-studies approaches have elucidated the relationship
between the material and the semiotic in ways that offer new nuances to some of film theory’s
foundational questions; and second, that certain films—films I call “sick cinema”—reveal the
extent to which representing illness or disability requires a self-reflexive engagement with the
very act of representation. In constructing a canon of “sick cinema,” I aim to connect and
emphasize those films that, whether or not they explicitly depict disease/disability (and they
largely do), also work to evoke a kind of bodily anxiety, a reorientation to time and space, that
speaks to the phenomenological, affective, visual, and ontological aspects of sickness and
disability. Historically, film theory has made much of the categories “life” and “death,”
“material” and “immaterial,” without sufficient attention to the innumerable fluctuations of the
body-in-between, the banality and incommunicability of pain and loss, and the diversity and
mutability of human embodiment itself. Sickness and cinema each, in their own way,
simultaneously turn the body into a text, an experience, and a kind of machine. I focus on
cinematic depictions of the deterioration of the body through disease, injury, amputation, loss of
mobility, pain, sensory disability, disfiguration, and abjection: in forms of sickness and bodily
otherness that are represented or imagined as somehow external to or separate from the self, as
disruptions or impediments to the achievement and expression of subjectivity rather than its
constitutive elements (artificial though this distinction may be). When the camera’s gaze
intersects with the clinical, diagnostic, and fearful gazes that surround the sick or disabled
subject, the relationship between cinema, embodiment, and representation must be thought anew.
If the body becomes most known to us in its moments of failure and distress, in the moments
when we confront its very unknowability, its frailty and its autonomy, how might cinema be
capable of telling these moments? And what might those moments help us better understand
about cinema’s most foundational questions?

1
Sick cinema:
illness, disability and the moving image

Introduction
Considering how common illness is, how tremendous the spiritual change that it brings,
how astonishing, when the lights of health go down, the undiscovered countries that are
then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to
light, what precipices and lawns sprinkled with bright flowers a little rise of temperature
reveals, what ancient an obdurate oaks are uprooted in us in the act of sickness, how we
go down into the pit of death and feel the waters of annihilation close above our heads
and wake thinking to find ourselves in the presence of the angels…

-Virginia Woolf, On Being Ill
1

We will all get sick; that much is nearly certain. When I first conceived of this project, in
2014 as I was applying to a Cinema and Media Studies doctorate at the University of Southern
California, I, like most people on earth, had never heard of Covid-19. I have written and
rewritten the opening paragraphs of this introduction many times: first, in a world that, despite its
innumerable health inequities, was not being ravaged by a global pandemic; then, from within
my apartment during what I thought might be several strange weeks or months of communal
isolation; and now, from a world that feels (at least within the scope of my own lifetime)
permanently changed, one in which the movements of a contagious, airborne virus profoundly
dictate the course of political and cultural events. In 2014, although activists and scholars in
disability and illness studies had been calling for greater attention to their cause for decades,
disability was still regularly left out of (increasingly mainstream) conversations about diversity
and inclusion in academia and elsewhere, and was certainly not a topic of central consideration

1
Virginia Woolf, “On Being Ill,” The New Criterion, vol 4. no. 1 (1926): 32.
2
in film studies. The relevance and urgency that this project has taken on in light of Covid-19 is
not one I or anyone else would ever have predicted or wished for.
The economic and social impacts of this pandemic will reverberate long after the health
crisis is over, and we do not yet know when that “over” will really be. It is, undeniably, an
uncanny experience to be consolidating seven years’ reading and viewing on cinema’s
relationship to virality, contagion, and death right now. As a well person, writing from the
“inside” of a historical moment, I know that only time will give me or anyone else the distance
we purportedly need to make any of this cohere, or, perhaps more importantly, the distance we
will need in order to be able to resist and undermine the narrative that inevitably coalesces
around the virus. It has been a bit over a year since vaccines became widely available. As of this
writing (spring 2022), it has been several months since Californians began a “return to
normalcy,” though many disabled and immunocompromised people would dispute that account,
since the virus is far from eradicated, and public gatherings remain tense. It is never clear when
another lockdown may come. Surgical masks have become a part of my everyday visual field.
Like everyone else I knew, I spent the first year and a half of the pandemic largely at
home, public life having been mostly shut down. It was an exhausting and bizarre time. Our
collective isolation and anxiety paradoxically connected us; we felt a new kind of common
ground with strangers, a newfound certainty about our shared experience, at the same time as we
had cut off all interaction with them. We were, to use one of the most ubiquitous disability
metaphors, paralyzed in our shared feelings of urgency, of need, of frailty. But—whatever. I
cannot, productively, write about the pandemic. It’s all simply too much, too on-the-nose, too
obvious and too meaningless and too predictable and too endless. And in many ways this is the
challenge that sickness presents, the challenge that I write about in this manuscript, that the
3
artists whose work I read in this project have tried in varying ways to confront: in our world, at
least, sickness and disability mean nothing, come seemingly out of nowhere, remind us of our
profound interconnectedness at the same time as they isolate and excavate us. Illness and
disability live at once deep inside and far outside our bodies, amplify and accelerate every
existing social inequity that never signified anything except our devastating capacity for cruelty,
force us to attempt to alter our bodies—and the world—while they stall and inhibit processes of
change in our bodies as in our communities. We must do something, and we cannot. These
polarities, these opposed and simultaneous truths, are themselves exhausting. This is the working
function of sickness from which I begin: that the threat it poses is a threat to form, because it
collapses the distinctions that form the basis of so much of our knowledge, our feeling, our sense
of time and space. For that reason, I will argue here, films that attend to the experience of illness
and disability are always in some way in dialogue with questions of form, questions that harken
back to film theory’s earliest days.
Across this dissertation, I investigate the connections between sickness and bodily
difference, and more specifically physical illness and physical disability, and the mysteries of the
cinematic image. I understand this project as a critical intervention in several fields—particularly
film theory, visual studies, and disability studies—that allows me to investigate their shared and
mutually useful interest in the way that the ailing or aberrant physical body both represents, that
is, its metaphoric functions, and is represented, is turned into an image and a site of knowledge.
What I argue is twofold: first, that disability-studies approaches have elucidated the relationship
between the material and the semiotic in ways that offer new nuances to some of film theory’s
foundational questions; and second, that certain films—films I call “sick cinema”—reveal the
4
extent to which representing illness or disability requires a self-reflexive engagement with the
very act of representation.
In constructing this preliminary canon of “sick cinema,” I aim to connect and emphasize
those films that, whether or not they explicitly depict disease/disability (and they largely do),
also work to evoke a kind of bodily anxiety, a reorientation to time and space, that speaks to the
phenomenological, affective, visual, and ontological aspects of sickness and disability.
Historically, film theory (and Woolf, in the essay I cited in this introduction’s epigraph, makes
the same accusation of literature) has made much of the categories “life” and “death,” “material”
and “immaterial,” without sufficient attention to the innumerable fluctuations of the body-in-
between, the banality and incommunicability of pain and loss, and the diversity and mutability of
human embodiment itself. Sickness and cinema each, in their own way, simultaneously turn the
body into a text, an experience, and a kind of machine.
I focus here on cinematic depictions of the deterioration of the body through disease,
injury, amputation, loss of mobility, pain, sensory disability, disfiguration, and abjection,
afflictions that are socially, visually and narratively designated “physical,” rather than mental or
developmental. I am interested in forms of sickness and bodily otherness that are represented or
imagined as somehow external to or separate from the self, as disruptions or impediments to the
achievement and expression of subjectivity rather than its constitutive elements (artificial though
this distinction may be). The split between mind and body is an important rhetorical point of
departure for my project, not because I subscribe to it but precisely because this project is
centered around the ways illness and disability destabilize all of the binaries that follow from the
5
Cartesian one:
2
sick/well, alive/dead, infected/clean, self/other, real/imagined, fact/fiction,
doctor/patient.
When the camera’s gaze intersects with the clinical, diagnostic, and fearful gazes that
surround the sick and abjected subject, the relationship between cinema, embodiment, and
representation must be thought anew. If the body becomes most known to us in its moments of
failure and distress, in the moments when we confront its very unknowability, its frailty and its
autonomy, how might cinema be capable of telling these moments? Sharon Snyder and David
Mitchell’s seminal literary studies work Narrative Prosthesis: Disability and the dependencies of
discourse (2000) argues for a consideration of disability representation beyond the rubric of
“accurate” and “inaccurate” representation, suggesting that “disability’s representational ‘fate’ is
not so much dependent upon a tradition of negative portrayals as it is tethered to inciting the act
of meaning-making itself.
3
Following from Snyder and Mitchell, one of my central guiding
questions is thus: what is at stake in cinematic representations of disease and disability—both for
the embodied subjects, fictional or real, being represented. and for our understanding of
cinematic representation (and meaning-making) itself?
In choosing to use the term “sickness,” with its colloquial and pejorative overtones, rather
than amore specific or scientific (i.e. “neutral”) term, I am consciously directing myself towards
two things: first, I am guided in my thinking by the structure of the colloquial phrase, whose
meaning already appears to be self-evident and which circulates readily in discourse without

2
Drew Leder writes that the Cartesian project inaugurates the modern age in which we achieve,
however temporarily, conquest over death—by turning the body into an object for the mind’s
investigation and, subsequently, intervention through medicine, we prolong its life. See: Drew
Leder, The Absent Body (University of Chicago Press, 1990), 142.
3
Sharon Snyder and David Mitchell, Narrative Prosthesis: Disability and the Dependencies of
Discourse (Ann Arbor: University of Michigan Press, 2000), 6.
6
necessarily requiring explication or justification; second, I am also interested in the vagueness of
“sickness,” its multiple meanings and ambivalent relation to the subject (sickness can mean both
an embodied experience and its cause, a scientific and clinical category or an individuated set of
sensations). It is precisely in that elusive duality, the immediacy with which the term is
understood and the ways in which it always gestures towards all that it leaves out, towards its
own empty center (sickness is always waiting to be attached to (and to diminish) something, to
an image or to a body) that I understand my own methodology and imperatives. Sickness
indicates difference qua difference more than it does anything else; the nature and form of that
difference, and the judgments inherent in the construction of difference.
I ground my work in close reading, both of the film texts that ground this project and of
the critical theory that supplants that reading. Snyder and Mitchell, among many others, remind
us that the ill or different body is a site of constant, often unasked-for reading: the disabled
subject, out in the world, is subjected endlessly to medical analysis and testing, but also staring,
gawking, invasive questions; the disabled character is subjected to metaphor, freakery, asked to
serve as an avatar for fear, death, the failures of the social world. My own close reading, which
emerges from a disability-studies ethos, is undertaken in the hopes of a more nuanced approach,
one that meets these texts on their terms—and their terms, I will note, are not always the terms
we might like.
***
However, despite my insistence on “sickness” as a key term here, I must acknowledge the
centrality of disability studies to this project: disability studies, which might be characterized as
the study of being sick or of sick beings, has already begun the work of thoroughly excavating
the messy, multiple spaces between the body and language, sensation and representation, the
7
phenomenological and the ontological. I believe that it is only once I begin to reframe and
reorient my critical thinking in terms of disability’s challenges to representation—its challenges
to language, politics and identity, and the visual—that my study of cinematic representations of
sickness can begin in earnest.
Disability studies is an interdisciplinary and continually evolving field, and one whose
central object of analysis can be extremely difficult to define. As an identity-based discipline that
has been intertwined with advocacy work from its inception, disability studies has always been
expansive. This is coherent with the concept of disability itself, which comprises a vast array of
physical and cognitive conditions and experiences, some permanent, some temporary, and each
necessarily experienced differently at different moments, in different contexts (here the most
basic example might be, to draw from British disability scholarship, the ways in which use of a
wheelchair only becomes prohibitive in the absence of a ramp; we might also think about the
inherently mutable and fluctuating nature of pain, and the myriad other factors—physiological or
social—that exacerbate certain symptoms and sensations in the body at certain moments).
But this capaciousness is also a necessary guiding principle of disability studies’ central
political aim: expanding legal, political, social, and cultural conceptions of what constitutes a
body, a subject, a citizen, and a self. The social model of disability, which is key to my study,
emerged in the United Kingdom in the 1970s through the efforts of an advocacy group known as
the Union of Physically Impaired Against Segregation (UPIAS). It insists on a distinction
between impairment, which is the particular condition of an individual body, and disability,
which is imposed on non-normative bodies through a set of structural and public barriers to
access. In this model, disability is “a relationship between people with impairment and a
8
disabling society,” rather than an individual deficit.
4
Notably, the social model also calls for the
use of “disabled person,” as opposed to what American activists have called “person-first
language”—“person with disabilities.” Despite certain critiques of the social model that have
emerged in recent years—specifically for the ways it fails to account for embodied experience
and leaves little room for intersectional approaches—the term “disabled person,” which draws
attention towards that which is disabling rather than to the subject herself, has become
increasingly commonplace in academic and activist spaces. The social model helps elucidate the
ways that disability is contingent, contextual, embedded in language, and subject to change: its
boundaries regularly and eagerly drawn and redrawn, from the outside (for example, by
institutions that determine people’s rights to social benefits, by built environments that impede
access to education or participation in public life, etc.) as well as from within disabled
communities.
While both legal and social sciences approaches to disability studies have provided many
of the discipline’s defining texts, my own work unsurprisingly takes its cues from the rich body
of disability studies work in the humanities, work that has proliferated from the 1980s to the
present, although its focus has largely been on literature and visual art. Jay Dolmage and Ato
Quayson have both offered significant readings of the rhetorical and aesthetic crises provoked by
“imperfect” bodies in the face of power’s homogenizing reach. Eli Clare and Margaret Price
have written extensively on the relationship of disability to cure and pain, as both private and
public phenomena. Robert McRuer and Alison Kafer’s work at the intersections of queer theory
and disability studies helps us understand the degree to which, as Lennard Davis has also argued,

4
Tom Shakespeare, “The Social Model of Disability,” in The Disability Studies Reader, 2nd
edition, ed. Lennard J. Davis (New York: Routledge, 2006), 197.
9
disability studies is in many ways the study of norms and normativity, the imposition and
enforcement of these norms. Sharon Snyder and David Mitchell, whom I cited above, have been
particularly great influences on my work. Their continued interrogations of physical difference,
representation, and signification have much to offer contemporary film studies, far beyond my
project.
This dissertation aims to extend beyond the cataloguing impulse—a vital one, to be
sure—that has thus far characterized much of the film-critical work that deals with disease and
disability. While I am indebted to the work of scholars like Paul K. Longmore, Martin Norden,
or Sally Chivers and Nicole Markotic, who have painstakingly combed the archives in search of
these characters and narratives so often suppressed (and vilified or ostracized as soon as they do
appear on screen),
5
this project attempts to expand upon their work and reanimate more
theoretical questions—in particular the question of form—that have already received some
attention in literary disability studies. When we speak of “deformity,” what are we implying
about the relationship between the body and the idea of form? How can the crisis of
representation that sickness seems to invoke time and again teach us about the nature of that
representation, whatever its moral or ethical implications might be?
At the same time, we cannot ignore the fact that the difference between “good” and “bad”
representations can have serious political and social ramifications with major effects on the lives
of people with disabilities. It is hardly surprising that mainstream cinema, in the United States
and abroad, has provided no shortage of reductive and harmful representations of disability that

5
See: Paul K. Longmore, Why I Burned my Book and other Essays on Disability (Temple
University Press, 2003); Martin Norden, The Cinema of Isolation: A History of Physical
Disability in the Movies (New Brunswick: Rutgers UP, 1994), and Sally Chivers and Nicole
Markotic, eds., The Problem Body: Projecting Disability on Film (Columbus: Ohio State
University Press, 2010).
10
serve to further marginalize and exploit an already socially vulnerable group. My own scope of
interest is admittedly vast: I examine some of these films closely alongside experimental films; I
engage documentary alongside narrative cinema, though I prefer to linger in the interstices
between them; I look at work that is created by artists and directors with disabilities, and work
that is not; I take even the definition of “sickness” loosely, which, as I indicated above, is a
conscious and key decision, one that emphasizes the arbitrary and unfixed nature of the term
itself. I do not mean to suggest that my project has no political valence merely because I am not
as invested as I might be in deciding which narratives do the most or least harm to people living
with diseases and disabilities; on the contrary, I hope that my political contribution here will be
to insist that the connection between film studies and disability studies is in fact an absolutely
vital one, that film theory’s continued role in reifying the normative body requires sustained
revision, and that many central questions in film studies—about form, identification, and the
nature of the real—are (and ought to be) given new life by the bold interventions that disability
studies scholars have made in the humanities over the past twenty years. If we can characterize
much of twentieth-century critical theory as a set of questions about identity, subjectivity, and
desire, a disability studies framework offers us an interruption and a corrective: what of people
who are not merely treated as lesser or monstrous, but have a productive and embodied relation
to abjection, to mutability, lack, contagion? How are subjectivity and desire different for bodies
that are figured as somehow closer to birth or death than others (the developmentally “behind,”
the terminally ill)? How does the insistent literality and materiality of the (oft-abstracted) ailing
body help us understand the relationship between screen and image, spectator and film, in a new
way?
11
This manuscript is split twice over. The first half of the text considers films that are
(relatively) mainstream and that are made by non-disabled directors and feature non-disabled
actors. Their representations of illness and disability are of interest to me for what they reveal
(beyond the reductive ableism that is present in so many mainstream representations) about the
relationship of illness and disability to practices of signification, from the vantage point of the
(imagined) normative viewing subject. That is, these first films all seem to me to be formed in
the wake of an anxious gap, a gap that erupts when the ill and disabled subject appears before us:
a sudden uncertainty about the terms of the visible, the knowable, the whole, about the relation
of body to mind, self to other, human to nonhuman. The second half of the text turns (primarily)
to films that are made by artists and filmmakers who are, themselves, sick and/or disabled.
Again, it is not merely the inarguable cultural value of these marginalized voices that interests
me here. Rather, it is the way that these films engage disability and disease as sites for
experimentation. They refuse the terms of the ableist gaze through a self-conscious play with
language, time, image. They understand disability as aesthetically rich, as full of possibility, and
most importantly as a rubric that touches and corresponds to all human life. But there is another
split in this text: that between illness and disability. My first and final chapters consider illness,
the viral, contagion, mortality; my second and third chapters attend to amputation, deafness,
blindness, muteness. This symmetrical structure, which moves from the site where the human
body’s vulnerability first makes itself known, through variously imagined and represented forms
of bodily difference, and all the way to body’s greatest and final act of difference—its death—
helps me connect these films clearly to one another despite my many movements across concepts
and media forms.
12
Before I continue I want to make clear the stakes of my investment in film theory and
how I perceive its connection to disability studies. One of the founding contributions of disability
studies is an insistence that the distinction between embodiment and ideology (we can also
conceive of this as the mind/body split) is both a politically suspect and erroneous one. This goes
two ways: on the one hand, bodies are made and unmade through language and other systems of
representation, and a great deal of the oppression and marginalization of people with disabilities
is derived from these systems; and on the other hand, it would be dangerous to collapse the body
into mere abstraction, to ignore the material and physical realities that form the basis for
individual and collective lived experience. Rosemarie Garland-Thomson’s “Misfits: A Feminist
Materialist Disability Concept” offers the concept of “misfit” as a particularly productive way of
thinking disability. The notion of misfit as noun – one who does not fit—and as verb—the act of
not fitting—becomes important for understanding disability as a process of incongruity rather
than an identity, one that is rooted not in the disabled individual’s body but in the dynamic
relationship of that body to a (physical and social) world that cannot always accommodate it. The
misfit allows us to understand disability’s social construction while avoiding a reliance, as she
writes, on a “theoretical generic disabled body.”
6
It names a widespread phenomenon while it
also accounts for the particularities of individual lived experience. The misfit suffers not because
of some bodily “failure” but because she finds herself out-of-sync with her built environment
and, as a result, forcibly cast out of social space. The student who cannot physically enter the
classroom, for example, or who cannot see or hear her instructor, will suffer losses to her
education that extend far beyond the moment of misfitting.

6
Rosemarie Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept,” (Hypatia
vol. 26 no. 3, Summer 2011): 591.
13
Garland-Thomson writes: “fitting and misfitting denote an encounter in which two things
come together in either harmony or disjunction…the problem with a misfit, then, inheres not in
either of the two things but rather in their juxtaposition.”
7
Ultimately, Garland-Thomson suggests
that misfitting allows us to grasp “disability as a way of being in an environment, as a material
arrangement.”
8
This framework recognizes the extent to which environments are constructed
without falling prey to a structuralist logic that removes agency and specificity from the disabled
individual. Moreover, it allows for a fluid and shifting sense of identity that recognizes the
mutual engagement of body and environment. Garland-Thomas continues: “fitting and misfitting
extend the concept that shape carries story” (emphasis mine), a phrase she borrows from
Caroline Walker Bynum’s work on “the philosophical question of continuity in human identity,”
which is, for Garland-Thomson, at its heart a disability theory question: “how can we maintain a
continuous sense of self as our bodies change over time?”
9
Misfitting “fuses a materialist with a
constructivist identity formation,”
10
understanding identity as performative and narrative, a
process of becoming in time that is in ongoing dialogue with “the thingness of the world.” The
idea that “shape carries story” is not especially radical in media studies—as the wealth of
research on form, content, and context attests—but Garland-Thomson reminds us that this is an
embodied concept that is lived particularly by misfits, whose form is consistently at odds with
the physical and social structures around them.
Garland-Thomson and many of her peers in disability studies thus articulate both the
political stakes of thinking about embodiment and the politics inherent in longer-standing

7
Garland-Thomson, 593.
8
Ibid., 594.
9
Ibid., 595
10
Ibid., 596.
14
debates around form, time, experience, and medium specificity. Film theory, for its part, has long
been concerned with continuity's relationship to identity and the material conditions that either
produce or disrupt it. Jean-Louis Baudry’s seminal work on the apparatus provides us a
surprising and significant place from which we can begin to untangle the connections between
cinema's material basis and the materialist-constructivist strain in disability studies. One of the
most important elements of Baudry’s argument, rooted though it may be in the specificity of the
celluloid film strip, is that the illusion of continuity (and we could say of liveliness, of
movement, of motility) so painstakingly achieved through cinematic projection is predicated on
both the minute differences between individual frames (necessary to make the image “come to
life”) and their subsequent concealment, the smoothing-over of the flicker from one frame to the
next in the service of creating a seemingly unified whole. “Film,” he writes, “lives on the denial
of difference: difference is necessary for it to live, but it lives on its negation.”
11
Any breakdown
of this process, any so-called failure of the cinematic apparatus, becomes a moment “when the
spectator is brought abruptly back to discontinuity—that is, to the body, to the technical
apparatus which he [sic] had forgotten.”
12
Where much work that attends to Baudry has
contextualized it alongside other work on film and ideology, or focused on his essay’s
contributions to conversations in film semiotics or medium specificity, I am curious about the
bodies that swell in the shadows of this text. What becomes of the bodies replaced and displaced,
fractured, put back together, captive and captivated, transcended and abandoned but never fully
escaped? Is there not, to use Smith and Morra’s key phrase, a prosthetic impulse
13
being worked

11
Jean-Louis Baudry, “Ideological Effects of the Basic Cinematic Apparatus,” Film Quarterly,
vol. 28 no. 2 (Winter 1974-75): 46.
12
Ibid., 46.
13
See: Marquard Smith and Joanne Morra, The Prosthetic Impulse : from a Posthuman Present
to a Biocultural Future (MIT Press, 2006).
15
out through this ideological-materialist approach? Baudry writes, as I will elaborate later in this
text: the “search for narrative [and formal] continuity…is a question of preserving at any cost the
synthetic unity of the locus where meaning originates,”
14
that is, the synthetic unity of the subject
herself.
The notion of the subject’s “synthetic unity” in Baudry’s work takes on new significance
in light of Garland-Thomson’s notion of the misfit. If the disabled artist’s sense of self is already
(in)formed by a consistent feeling of rupture, of disjunct with the surrounding environment, then
the apparatus can come to function as a way of smoothing over that discontinuity—as a kind of
prosthesis. On the other hand, the apparatus’s ability (through those formal flourishes that
announce its presence) to jolt the spectator into an unproductive

relation with her body, and, in so
doing, disrupt the process of meaning-making and the illusion of continuous and easeful
embodiment, can be mined (as it is in a number of these films) for its singular potential. A
disability approach helps us better understand the connections between technology, embodiment,
identification, and perception: how might a body constituted by difference, already subjected to a
kind of “breakdown” and “transformation,” disrupt or recalibrate Baudry’s configuration? How
do seeing, forgetting, and the body converge at the site of the cinematic screen? How is bodily
difference construed through the visual (whether the visual act or the visual object)? I will follow
Garland-Thomson’s notion of fitting and misfitting, via the kind of mutuality between spectator
and film evoked by Baudry, throughout this text, as a way to consider more deeply the
disjunctures and “failed encounters” that occur between the viewer and the screen, between the
subject and the body. I should note that in my turn to the apparatus, I follow Mary Ann Doane’s
argument that the arrival of the digital and of “media studies” has not somehow rendered

14
Baudry, 47.
16
apparatus theory null and void. Doane, following Miriam Hansen, argues that even if the cinema
as Kracauer or Bazin theorized it is, perhaps, dead, even if the days of celluloid and projector are
long gone, “the intense and privileged relation to contingency, assured by photographic
indexicality in the abstract”
15
remains present in our relationship to all film forms, digital or
otherwise. I also follow Eugenie Brinkema’s lead in suggesting that the so-called “turn” to affect
and phenomenology in film studies did not necessarily succeed in casting away the ghosts of
early film theory.
16
Indeed, I would argue, recognizing the limitations of apparatus theory,
psychoanalysis, and theories of realism does nothing to undermine their usefulness or their
relevance, and the way they continue to shape even those approaches that purport to see film
differently.
Disability studies, like film studies, has always on some level been linked to questions
about the nature of visibility. Disability activists often note that disability is the least publicly
visible identity category (frequently given less legal, institutional, and cultural attention than
categories like gender, race, and class), in no small part because the kinds of actions required to
“become visible” in the public sphere (protest, public speech, performance, etc.) are especially
difficult in the face of the many barriers (architectural, linguistic, and otherwise) disabled
individuals face in an inflexible and discriminatory world. Within a disability studies framework,
much has also been made of the difference between visible and invisible disabilities, and the
benefits and consequences of each. Garland Thomson’s work on the gaze, in Staring: How We
Look as well as the edited collection Freakery, helps connect the objectifying practices, both
positive and negative, associated with the gaze to disabled subjects (here we might think about

15
Mary Ann Doane, “The Object of Theory,” in Ivone Margulies, ed., Rites of Realism: Essays
on Corporeal Cinema (Duke University Press, 2003), 85.
16
Eugenie Brinkema, The Forms of the Affects (Duke University Press, 2014), 32.
17
gawking, averting the eyes, or even documentary photography in the style of Victorian freak
shows or the work of Diane Arbus).
I consider also the role of narrative, and language, in the figuration of sickness, and in the
ways it is “seen.” Diseases and disabilities can provoke new narrative strategies in film at the
same time as they disrupt and force us to rethink the narrative strategies that have already
crystallized around the (pathologized) body. Social and cultural narratives of illness intersect
with cinematic narratives in ways that can be alternately harmful and generative, and thus
deserve a closer look. As Lisa Cartwright’s work in Screening the Body indicates, the history of
pathology is always a history of a search for a narrative, for the emergence of a narrating or
narrated subject, and for a causal and teleological structure, a set of origins and possible endings,
that contains—even quarantines—the “threat” of illness within its shape. It is also a history of
looking, both in the sense of surveillance and power (I turn to Canguilhem and Foucault’s
important work on normality, health, and medical epistemologies) and in the various
technologies that recalibrate our experience of the visual world. Cartwright explores in great
detail the ways in which cinema and film technology has been used historically “to analyze,
regulate, and reconfigure the uncontrollable fields of the body.”
17
She suggests that “the
cinema’s emergence cannot be properly conceived without acknowledging the fascination with
visibility that marked the preceding decades of nineteenth-century Western science” and that
film theory is defined in part by its “complex sliding between the psychological and the
technological.”
18
Akira Mizuta Lippit, in his study of the X-ray, the cinematic image, and
psychoanalysis, similarly interrogates the parallels between nineteenth- and twentieth-century

17
Lisa Cartwright, Screening the Body: Tracing Medicine’s Visual Culture (Minneapolis:
University of Minnesota Press, 1995), xiii.
18
Cartwright, 7.
18
anxieties about the body—its knowability, its boundaries, its interiors, its wholeness, its affinities
(or lack thereof) with the “self”—and the emergence of cinema, as well as all of the anxieties
about the cinematic image (and its indexicality, its “aliveness” and its “deadness”) that would
follow soon thereafter. In Cartesian and post-Cartesian epistemologies alike, the body—and
especially the medicalized, pathologized body—is a central site of contestation. Is to see a body
to know it? If we understand pathology itself as a way of making sense of the sensible, and
making intelligible the unintelligible (i.e. the felt, the symptom), then its own semiotics—which
bear a great deal in common with the cinema’s—merit further attention.
And this requires us to unpack the relationship between knowledge, the sensory, and the
body a bit further. Laura U. Marks opens her chapter “The Memory of Touch,” in The Skin of the
Film: Intercultural Cinema, Embodiment, and the Senses, with an epigraph by Deleuze, from his
Cinema 2: cinema, he writes, “affects the visible with a fundamental disturbance, and the world
with a suspension, which contradicts all natural perception. What it produces in this way is the
genesis of an unknown body.”
19
Marks will go on to elaborate, at length, the way cinema might
invoke the tactile, or the memory of touch: memory, she suggests, “is encoded in objects through
contact,”
20
and it is often at its most intimately experienced beyond the audiovisual, in the senses
that hew more closely to the body, like (or even, most of all) touch. Although cinema in its
conventional form can never literally be a medium of touch, Marks writes, it can nevertheless
traffic in a form of visuality that “yields to the thing seen…is not merely cognitive but
acknowledges its location in the body, [and thus] seems to escape the attribution of mastery” so

19
Laura U. Marks, The Skin of the Film: Intercultural Cinema, Embodiment, and the Senses
(Duke University Press, 2000), 127.
20
Marks, 129.
19
commonly associated with the visual.
21
Marks’ work in this text and elsewhere has offered film
scholars a language with which to describe all kinds of cinematic images that defy
straightforward visuality and produce what she calls “tactile epistemologies,”
22
some of which I
will engage later in this text. But what I want to consider for a moment here is the epigraph: the
way cinema, in its more tactile, ambiguous, unclear moments, might be capable not of producing
new forms of knowledge, but of producing a specifically and continuously unknown body,
hovering and unfolding alongside our own in space and time. In Drew Leder’s The Absent Body
(1990). which Marks briefly cites in this same chapter, Leder writes, of disease: “when the body
is rendered opaque through loss of function, we become aware of it as alien presence…the alien
presence of the body expands until can threaten the entirety of one’s world.”
23
Illness, too, in its
onset, inaugurates the being of an unknown body—our own—and complicates our relationship to
the visible, the body newly “opaque” in its refusal to clearly signify, to reveal what is beyond its
surface even when we most acutely know that there is something there. Moreover, as Leder
reminds us, this sense of estrangement often extends beyond the “body” as such and transforms
the entirety of lived experience, alienating the subject from her own life in turn.
And so sickness cleaves the body from the subject, splits that newly-estranged body into
two: something that is and something that does. Margrit Shildrick, in her 2015 article “Why
Should Our Bodies End At The Skin?”, cites Deleuze and Guattari: “we know nothing about a

21
Marks, in The Skin of the Film, offers strategies for reading film through its materiality,
prioritizing a haptic relationship over an optical one; she suggests that the film’s “‘skin”’ might
be less a screen than “a membrane that brings its audience into contact with the material forms of
memory.” (243)
22
Marks defines tactile epistemologies as forms of knowledge gained “through physical
contact…[and through] a relationship to the world of mimesis, as compared to symbolic
representation.” (138)
23
Leder, 82-83.
20
body until we know what it can do, in other words, what its affects are, and how they can or
cannot enter into composition with other affects, with the affects of another body.
24
The disabled
body is constrained by what it is (purportedly) incapable of doing. The sick body is always
already figured as a site of potential: possible cure, possible contagion, possible death, but
always something looming on the horizon. And it is always connected to other bodies (human or
institutional), measured by and against them, thrust into either extreme closeness (by requiring
care, contact, examination) or extreme isolation. Shildrick’s work provides a useful bridge
between phenomenological theories of time and the realms of emotion, sensation, and affect. A
consideration of the role of affect here—both in the sense of “feeling sick,” the physical and
psychical discomfort that that connotes, and the many other feelings associated with one’s own
sickness as well as the sickness of others—is key to my investigation. I turn several times to the
work of Sianne Ngai on non-cathartic affects (boredom, irritation, anxiety). These are affects
that, she writes, mediate between the aesthetic and the political, and are often partially
experienced or read as a kind of passivity: they are responses to the inevitable, painful imposition
of the social world upon the individual subject, the frustrating and always-incomplete encounter
between the two.
25
I read, in particular, the unsettled affects of the onset of illness, as well as the
particular tedium of terminal illness, as key non-cathartic affects of sick cinema. It may seem
strange to focus on affect when I am otherwise clearly working to revive a film-theoretical
tradition that takes seriously questions of realism, the gaze, the apparatus. I am inspired by
Brinkema’s suggestion in her 2014 book The Forms of the Affects that “arguing for affect as

24
Gilles Deleuze and Felix Guattari, A Thousand Plateaus (1987) 284, quoted in Margrit
Shildrick, ““Why Should
Our Bodies End at the Skin?”: Embodiment, Boundaries, and Somatechnics.,”(Hypatia 30.1,
2015), 19.
25
Sianne Ngai, Ugly Feelings (Cambridge: Harvard University Press, 2005).
21
having form and reading for affect as it inheres in form does not empty the word of its forceful,
striving meaning…it is only because one must read for it that affect has any force at all.”
26

Brinkema’s insistence on a correlation—rather than a contradiction—between semiosis and the
kind of phenomenology typically associated with affect-based approaches allows me to situate
sickness at that same point of convergence.
In her 1991 book Simians, cyborgs and women: reinventing nature, Donna Haraway
famously defined bodies as “material-semiotic generative nodes.”
27
The generative convergence
of the material with the semiotic, or, put in Brinkema’s terms, the (cinematic) inseparability of
reading from feeling, is an important point from which to begin my own readings of the films I
examine here, precisely because work on sickness reminds us of this duality at every turn.A
consideration of reading and feeling, not merely as phenomena but as acts undertaken by a
subject, brings us then to phenomenology, to the sensing-of and making-sense-of the world.
Disability studies and phenomenology have both (at times unclearly) emphasized the
significance of hybridity and fusion. By emphasizing the unbounded and relational nature of the
body and of the screen, they expose “unwholeness” as a categorical fantasy, as a product of
relation rather than an ontology; the insistent wholeness of the cinematic image, like the insistent
wholeness of the body (no matter its impairments, its prostheses or its “missing parts”), is not a
product of its discrete existence but of its ability to fuse with the world, to function

26
Brinkema, 38.
27
Donna Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (London:
Routledge, 1990). She writes: “[B]odies as objects of knowledge are material-semiotic nodes.
Their boundaries materialize in social interaction. Boundaries are drawn by mapping practices;
'objects' do not pre-exist as such. Objects are boundary projects. But boundaries shift from
within; boundaries are very tricky. What boundaries provisionally contain remains generative,
productive of meanings and bodies. Siting (sighting) boundaries is a risky practice" (595).

22
intercorporeally. Vivian Sobchack’s work, to which I refer throughout this manuscript, draws
heavily on the work of Maurice Merleau-Ponty to argue for cinema as an embodied and somatic
experience. Where her earlier scholarship emphasized the relevance of a phenomenological
approach to theories of reception and viewership, in later texts Sobchack more specifically
considers what she calls “the carnal foundations of cinematic intelligibility,”
28
the ways that the
spectator’s body, understood as lived materiality and sentience instead of as text or machine,
makes meaning; this works on two levels at once. Where are the ends of the body, and what
precisely does the “wholeness” of a body (a body of water, a human form, a screen, an oeuvre)
have to do with its seenness, its visibility, as well as its status as more or less “acceptable” (i.e.
normative)? Is wholeness a question of singularity (one thing) or of multiplicity (or hybridity –
the simultaneous working of many parts)? What kinds of bodies defy or disrupt the very
foundations of wholeness? How can wholeness be thought in relation to flatness and depth, to
questions of inside and outside, questions which are so foundational to medical approaches to
technology?
Whereas Merleau-Ponty’s Phenomenology of Perception, and much of the work that
follows (including Sobchack’s) situates the subject as wholly “in” the world (in opposition to a
Cartesian mind that can somehow achieve separateness from its body and environment), Leder
takes Merleau-Ponty’s work as a starting point from which to investigate the various
“disappearances” of the body: the ways in which we “forget” about our body when we are
engaged in thought or absorbed in contemplation, the foreignness of our own body parts to us,
the seeing eye’s inability to register itself in the visual field, the even deeper mystery that

28
Vivian Sobchack, Carnal Thoughts: Embodiment and Moving Image Culture (Berkeley:
University of California Press, 2004), 59.
23
surrounds the internal organs. Following Derrida’s critique of the metaphysics of presence, Leder
is interested in the ways that a phenomenology of embodied perception, which asserts the body’s
ongoing presence in space and time, is in fact undergirded by myriad forms of absence. Leder is
a physician and phenomenologist whose work has been cited by Vivian Sobchack and, briefly,
elsewhere but remains, to my surprise, relatively obscure in the world of film phenomenology.
Leder’s text serves a simple but vital purpose: to draw attention to the significance of absence to
the embodied subject so central to phenomenological inquiry. For Leder, in order to understand
the enduring power of the Cartesian body-mind split (such that we might truly move beyond its
grasp), we must first understand the degree to which corporeality entails and requires absence.
And why move beyond its grasp? In part because the privileging of mind over body is so
clearly linked to ableism. The disabled subject, understood in the terms of the medical gaze as a
failed body, is also seen as primarily embodied. Because physical impairment is (incorrectly, per
social model thinking) understood as the source of the disabled subject’s social limitations, the
disabled subject is often identified as body first, mind second. This is especially acute in cases of
visible disability (when a person’s physical difference is the first thing others perceive about
them, thus taking precedence) as well as in cases of cognitive disability (as, for example, in the
Mel Baggs film to which I refer in my third chapter, wherein the nonverbal autistic subject is
perceived as unthinking and, by extension, less human). In a Cartesian framework, then, the
disabled subject is always doomed to be less-than, to be on the wrong side of the mind-body
divide. Only once we have understood how constitutive absence is of embodiment, Leder argues,
will we be able to resolve the particular dualism to which phenomenology, with its emphasis on
lived experience and the body’s immersion in the world, can fall prey, despite its supposed anti-
dualism: between the body as lived and the body as physical, that is, as object, an object that is,
24
importantly, as constituted by absence and recession as it is by presence and extension.
Considering the centrality of absence to film theory since its earliest days, Leder has much to
offer us.
A phenomenology of bodily absence has significant implications for visual studies,
psychoanalytic conceptions of lack and for the study of disability and disease; it helps us build a
counternarrative to that of deficit or deficiency that so often accompanies descriptions of alterity.
In uncovering the lack that constitutes the present, enfolded subject, Leder’s work troubles the
binary that distinguishes whole from unwhole bodies. This binary is also a cinematic one. Alanna
Thain writes, in her 2017 book Bodies in Suspense: Time and Affect in Cinema, that a sustained
attention to cinematic temporality and corporeality, or, more specifically, to time as the invisible
dimension of embodiment, can help reveal the ways film produces ongoing “anotherness,”
alerting us to “the consistency of the self becoming (an)other”
29
in ways that are as affectively
intense as they are narratively intriguing. The mutable, elusive, “other” film subject to which
Thain refers again takes on new resonance in light of disability and disease. The films I read here
play in various ways with the temporalities of sickness: the sudden, rupturing moment of
infection, of contagion, of the accident; the “progress” of disease, its stops and starts, rushing
down a path towards cure or death; the acceleration or deceleration of “development,” the
stalled, static slowness of the invalid. At the same time, a more social, diffuse, and disembodied
form of time infiltrates discourses of disease and disability: for example, “flu season,” the
historicization of certain diseases (and populations), the rise and fall of epidemics, or debates
about vaccination and the tenuous ethics and parameters of “early life.” I bring Thain’s project,
which helpfully reanimates some of the dustier film-theoretical approaches to temporality, into

29
Alanna Thain, Bodies in Suspense (Minneapolis: U of Minnesota Press, 2017), 12.
25
conversation with work by Shildrick, Ngai, Sobchack, Leder, and contemporary disability
studies theorists. We can agree that cinema and sickness invoke liminal, non-linear, fluid
experiences of time, of the self. But how?
***
I take four colloquial and common phrases (all of which appear variously through a number
of the films I intend to read here) as a starting point: feeling sick, which allows us to think
through the intersection of the physiological and the affective, the field of sensation and those
forms of experience we understand to be personal and subjective (and always slightly outside of
language); getting sick, which brings us towards questions of phenomenology and time (the
stages of disease, its rise and fall, symptoms, cure, the permanent and the temporary) as well as
proximity and intersubjectivity (i.e. contagion, risk, and contact, those things that bring us into
disease and disease into us); looking sick, in which we turn to the question of visuality and
visibility, the image of the human (and the norms that constitute that image), practices and
technologies of looking, surveillance, and the porous surfaces of the human body; and, finally,
being sick, that is, the ontology of sickness and the subject-formation that occurs in its wake, the
ways sickness construes identity and community, is prescribed, communicated, evoked, and
represented. Each of my chapters explores a different condition of sickness and attends in some
way to these phrases.
My first chapter, entitled Suddenly, I find myself feeling sick, focuses on two films I deem
“cinemas of contagion”: Todd Haynes’ Safe (1995) and Kiyoshi Kurosawa’s Cure (1997). Both
tell ambling, haunting stories of inexplicable bodily compulsions, infections, bodies out of
control or under the control of another. Neither is quite a horror film, but both are fraught with
suspense, a suspense that leads nowhere. In a 2001 interview, Kurosawa offered his vision of the
26
horror film: “I just want to give the generic name ’horror films’ to that family of films that take
as their subject matter the fear that follows one throughout one’s life.”
30
The fear that follows
throughout one’s life, I argue throughout this chapter, is at least in part the fear of contagion, of
contamination: the recognition that we are always susceptible, always affected by bodies outside
our own, and that, to return to Deleuze via Shildrick, we are also always, unwittingly, affecting
others. I argue that both of these films take as their subject the elusive and complicated
phenomenon of contagion itself, rather than its causes or effects. Contagion far exceeds the
bounds the of physiological: it is the site where we work out the distances between ourselves and
others, but also the way that we locate something like common experience. I take seriously
Priscilla Wald’s argument that contagion, at least in our contemporary understanding of it, is in a
way constitutive of the identity of the modern subject, a subject that is paradoxically reliant on
that which threatens its integrity.
31
Both Cure and Safe have been read as broad allegories for
global health crises (the residual effects of the atomic bomb, HIV/AIDS), and I agree that this is
key to our understanding of them, but I read them here for the ways they convey contagion’s
paradox of subjectivity—through their affects, their moods, their manipulations of time. In
examining their central characters’ inscrutability and flat affect, I argue, we come to better
understand how contagion is connected to bad feeling, to troublesome contact, to negative
emotion, to unclear intuition. And in so doing, I argue, we can see contagion at work in the

30
Cited in Marc Yamada, “The post-Aum films of Kurosawa Kiyoshi,” Japan Forum, vol. 27
no. 4 (2015): 484.
31
In Contagious: Cultures, Carriers, and the Outbreak Narrative (Duke University Press, 2008),
Priscilla Wald writes that “both [Durkheim and Freud, in Elementary Principles and Totem and
Taboo] found in the concept of contagion the principle through which to describe how the
mystical force of the sacred inexorably spills into the profane through physical contact or
through symbolic association…Contagion was a principle of classification that displayed the
rationale of social organization and was, therefore, the force that bound people to the
relationships that constituted the terms of their existence.” (14)
27
films’ formal qualities, in their temporal disruptions, their evocations of the metacinematic, their
frustrated play with the edges of the frame.
Thinking about cinematic identity and the edges of the frame brings me to my second
chapter, entitled “Bodies in water: disability cinemas and creatures of the sea.” In this chapter, I
focus primarily on two films, Guillermo del Toro’s The Shape of Water (2017) and Jacques
Audiard’s Rust and Bone (2012), though I also briefly consider Jane Campion’s The Piano
(1991). These films each tell, in very different ways, a familiar story: a disabled, female
protagonist is rehabilitated by romance, restored in her role as the object of heterosexual desire.
Stephanie, in Audiard’s film, has both her legs amputated after an accident at her job training
orca whales. The mute Eliza, in del Toro’s, falls in love with an amphibian creature held captive
in the laboratory where she works as a cleaner. Why these invocations of the sea and its
creatures? What makes marine life such a compelling metaphor in disability narrative?
In this chapter, I consider the ways that water and aquatic animals trouble the boundary
between life and nonlife, gesture towards the always-uninhabitable space of the other, and
become points of contact between the visual and the material. In both films, these images, I
argue, reveal cinema's fantasies of weightlessness and containment, ableist fantasies that are
always steeped in the desire to preserve the spectator's imagined bodily integrity. But these
metaphors also reveal cinema's ability to confound space and visibility, to make mixtures: to
produce discontinuous and immaterial forms of life, and, in so doing, to challenge dominant
notions of embodiment and wholeness. Drawing on contemporary work in disability theory as
well as the writings of John Berger, Maurice Merleau-Ponty, and Gilles Deleuze, I offer a
reading of these films that both lays bare the extent of their ableism and locates the moments in
which they offer us ways of thinking otherwise.
28
My third chapter, entitled In the absence of light, did they hear the blast of trumpets?,
takes its (serendipitous) title from the text of Derek Jarman’s Blue (1993). In this chapter, I read
Blue alongside two contemporary works—Alison O’Daniel’s The Tuba Thieves (2019-ongoing)
and Mel Baggs’ In My Language (2007)—three films wholly committed to thinking otherwise.
All three are nonfiction films that engage with a different sensory-motor disability—blindness,
deafness, muteness—but none follow the conventions of disability documentary. They are all in
some ways deeply personal, made by, respectively, a blind, a hard-of-hearing, and a nonverbal
filmmaker, but they are not in any real sense autobiographical. Instead, I argue here, these films
each work towards an abstracted horizon of documentary cinema that, rather than promising
clarity and certainty, is always and necessarily partial and contingent. Through their experiments
with absence and excess, in both the visual and aural fields, these films become documents of
encounter, documents that reveal the imagination’s vital role in producing the so-called “real.”
Theirs are logics of non-sense, logics that reveal the precarity and disunity of cinema’s sensory
field. In this chapter, I heavily engage with the writing of Vivian Sobchack, Hito Steyerl, and
Laura U. Marks, alongside work by Alison Kafer and other disability theorists. I lay the
groundwork, I hope, for a theory of disability documentary that interrogates not only the nature
of “information” but its modes of representation. Theirs is a documentary tradition that sits, yet
again, at the intersection of the material and the semiotic: actively engaged with the constraints
and experiences of the body, and the forms of knowledge that produces, while also playing with
the medium’s ability to disorganize the sensory field, to make and remake meaning.
My final chapter is also concerned primarily with documentaries, though it gets there
circuitously, stopping first at Akira Kurosawa’s Ikiru (1952), a narrative film about a lonely man
whose diagnosis of terminal stomach cancer profoundly changes his relationship to living. I stage
29
an encounter, in this chapter, between Ikiru and two AIDS video diary films of the early 1990s:
Peter Friedman and Tom Joslin’s Silverlake Life and Hervé Guibert’s La pudeur ou L’impudeur.
Silverlake Life: The View from Here pushed back against mainstream narratives about
HIV/AIDS by focusing on the tedium, small joys, and great tragedies of daily life in the throes of
disease. Joslin, his partner, and his friends used home video technologies to record, with an
extreme and heartbreaking intimacy, Joslin’s final months—in Peggy Phelan’s beautiful terms,
giving “the dwindling materiality of the AIDS body an awesome ocular weight.”
32
Guibert’s
film, also filmed in the final months of his life, takes a somewhat starker look at the realities of
living with, and towards, death. As documentaries, and as autobiographical films, what are these
two films’ relationships to knowing, to the truth-claims made by the documentary image? How is
this particularly complicated by the tenuous and complex relationship between the image, seeing,
and knowing that is foundational to Western medicine? All three of these films, I argue, attempt
to answer the impossible question of what it means to die, and what it means to know one’s
death, and what it means to die with or alongside the camera. I argue that these films’
explorations of grief and community give rise to a kind of reciprocal and caring gaze, one that
posits death as a shared horizon, and in so doing opens the subject to a kind of intercorporeality
in life, and to a new relationship with the image. These films, too, work against the “objectivity”
of the medical or documentary gaze, choosing instead to represent the sick and dying body as a
kind of time traveler, an opened-up being. Susan Sontag famously argued against the
metaphorization of illness, which she saw as moralizing and dehumanizing. I do not disagree, but
the films I explore throughout this project offer an important corrective to her work: they allow

32
Peggy Phelan, Mourning Sex: Performing Public Memories (London: Routledge, 1997), 154.
30
us to understand illness and bodily difference as originary to meaning, and thus as sites for new
meaning, for revised meaning, for ways to face the meaninglessness that ever bounds our being.
***
In “On Being Ill,” from which the epigraph to this chapter is taken, Virginia Woolf laments
language’s inadequacy in the face of illness. “It is not only a new language that we need,” she
writes, “primitive, subtle, sensual, obscene, but a new hierarchy of the passions.”
33
I consider
Sick Cinema my humble attempt to find flashes—little glimpses—of this new language, this new
hierarchy of the passions, in these films, in their most subtle, sensual, obscene moments.

33
Woolf, 34.
31
Chapter 1
Suddenly, I find myself feeling sick
Early in Todd Haynes’ Safe (1995), the film’s protagonist, Carol White, goes to the hair
salon. The film is set in 1987, and the salon looks the part, with mirrored paneling along all of
the walls. Carol, like all of the other women there, is duplicated, refracted, (partly) visible
everywhere. Light bounces off a seemingly infinite number of sheeny surfaces. Scissors and
blow-dryers click and whirr.
Figure 6. Carol at the hair salon (Safe, 1995, Todd Haynes)

Carol, who has recently begun feeling strange, has come to get her straight hair permed. It’s
time for a change. After a short conversation with the stylist, she gets into her chair, and a
haunting, wordless sequence begins. First, liquid chemicals from a bottle are squeezed into
Carol’s hair, stretched taut over rollers. Carol is spun around in the chair, her eyelids drooping,
the air dense with chemical fumes.
32
The different parts of the process cross-fade into one another; Haynes’ ominous, industrial
score pulses beneath, swelling and rhythmic behind each step, like the making of a weapon in an
action film.

Figure 7. Carol's hair (Safe)
33

Figure 8. Carol's perm (Safe)

Finally, the perm is over. The hairdresser spins Carol around to see her new self in the
mirror. As she gazes, open-mouthed and bleary, upon her reflection—a slowness to her face, as
though emerging from sleep—her left nostril begins to fill with blood, blood that quickly begins
to drip towards her mouth. Carol rises abruptly into consciousness. She gasps, cries out for a
tissue, throws her head back. Then we cut: Carol is back at home, in her mirror-paneled
bedroom, with her husband (and his own faint, relentlessly duplicated image).
34
Figure 9. Carol sees herself in the mirror (Safe)

Figure 10. Carol's nosebleed begins (Safe)
35

Figure 11. Carol notices her nosebleed (Safe)

Figure 12: Back in Carol's bedroom (Safe)
36

This short scene marks the beginning of the end for Carol, who will spend the rest of the film
in the grips of an illness she cannot name or understand.
*
About a quarter of the way into Kiyoshi Kurosawa’s 1997 film Cure (released under the title
Kyua in Japan, but henceforth referred to here by the English word to which the Japanese title
refers), we find ourselves outside a hospital. Detective Takabe Kenichi, of the Tokyo police
force, is waiting to speak to his colleague Sakuma Makoto, a psychiatrist. The two men have
been trying to uncover the relationship between Mamiya, an inscrutable young man who claims
to have lost his memory, and a string of totally inexplicable violent murders around Tokyo. They
are on the brink of figuring it out. As the two men sit on a bench, wondering how everything
might be connected, the steam from Sakuma’s drink rushes from his paper cup, clouding the air,
vanishing into nothing. Takabe and Sakuma start to piece together a theory, one that the film will
soon reveal to be correct: Mamiya has been hypnotizing his victims, one by one. After being
hypnotized, each person goes on to kill someone else, seemingly at random—a stranger, or
someone they love.
37

Figure 13. Detectives Takabe and Sakuma discuss the case (Cure, Kurosawa, 1997)

Suddenly, we cut away from the two men on the bench, to Takabe’s wife, with whom we
began the film and to whom I shall return shortly. But just as abruptly we find ourselves inside
the hospital as Mamiya gets wheeled down a long hallway. He is in the hospital because has
recently jumped from the rooftop of a small building, injuring himself, for no apparent reason.
38

Figure 14. Mamiya at the hospital (Cure)

He enters a tiled room where a young doctor waits. We have met her before, briefly: in one of
the film’s many unsettling narrative detours, we saw her examine a young man, without context
or explanation, several scenes prior. She quickly scans Mamiya’s body, and concludes: “there’s
nothing physically wrong. So how’s your memory?” Mamiya admits that he has none—he
remembers talking to her, but not much else—and she then asks him if he has any worries.
“You’re the one with worries,” he says, unsettling her.
39

Figure 15. Mamiya meets a young doctor (Cure)

Figure 16. Mamiya turns from the doctor (Cure)
By this point in the film, we know what he is about to do, because he has done it twice
before: he quickly thwarts the doctor’s attempt to evaluate him and begins to interrogate her
instead—and not just to interrogate her, but hypnotize her. As he speaks, he numbly knocks over
40
a glass of water. She stares, eyes downcast, mouth slightly open, as the liquid makes its way
across the linoleum floor. “Doctor, may I tell you something?” he asks, flatly, by way of
beginning. “All the things that used to be inside me are now on the outside.”

Figure 17. Water spills across the floor (Cure)
41

Figure 18. The doctor is entranced (Cure)

Figure 19. The water continues across the floor (Cure)
*
42
I open with these two scenes because they so vividly encapsulate what interests me in these
two films and in this opening chapter. Haynes and Kurosawa use these moments of spill, of a
liquid’s languorous, unpredictable spread—down the face, across the floor—to signify what is
precisely impossible to signify about contagion: its status as at once autonomous and non-
agential. Safe and Cure do not follow the conventions of the outbreak narrative, because what
they are interested in, what structures their narratives, is not actually illness: it is contagion.
Contagion is a doing that is not predicated on being, but that nevertheless requires and threatens
being. Contagion names the movement of a disease from one subject to another, a movement that
is necessarily unwilled and unpredictable, but is also structured from without—contingent on
contact, some kind of co-presence. Everything that was inside (the body, the vessel) is outside.
Per Mamiya’s logic, this makes it possible to see within the other; to enter the other’s body.
Rather than “outbreak,”
34
with its suggestions of escape and danger (and the implication of a
kind of agency on the part of that which is broken-out, let-loose), spill immediately invokes
something irreversible, uncontainable, a process that once begun cannot be undone precisely
because it attaches itself so wholly to its environment. In hewing to the surfaces around it, a
spilled liquid’s trajectory becomes entirely determined by, and inseparable from, its
surroundings. The liquid rises from the cup and disappears, or it seeps into the hair, altering it,
permanently, mysteriously. The blood that leaves the nose cannot be properly inhaled back in.

34
Bill Albertini writes: “Outbreak narratives trace a process that begins with a disease’s
appearance—its emergence—and ends with its enclosure. Public health and popular narratives
follow this pattern, often deeply invested in the process of making visible, and thus avoidable or
containable, the invisible threat of contagion.” Bill Albertini, “Contagion and the Necessary
Accident,” Discourse vol. 30 no. 3 (2008): 443.

43
That which has been spilled stubbornly refuses any possible return to the source—the moment
spill begins, so too does the disappearance of the spilled, its absorption into surfaces (the hair,
the floor), its dissipation into the air. We can mop it up at best, but something lingers, sometimes
briefly, sometimes forever.
***
Cure’s story is on one level straightforward: a series of seemingly random, violent murders
are taking place in and around Tokyo, and our detective, Takabe, is intent on finding the
perpetrator. His search soon brings him into contact with a haunted, enigmatic, and apparently
amnesiac young man, Mamiya, whom we quickly discover is using an obscure form of
mesmerism and hypnosis to compel the people he encounters to kill, seemingly at random. The
central problem, then, becomes not of revealing who is committing the crime or even, really,
why, but how he can be contained: how to stop him from infecting others. We enter the story as
an unknown man bludgeons a prostitute to death, presumably under Mamiya’s influence; we
then see Mamiya exercise his powers on a young schoolteacher, whom he lures into killing his
wife, then on a policeman and the young doctor I have just mentioned, and then on Sakuma.
Detective Takabe, as we might expect, becomes increasingly obsessed by the details of the case
and, eventually, contaminated. In the end, following a shootout in which Mamiya dies, Takabe
(seemingly) takes on his powers.
Meanwhile, in Safe, a wealthy and bored—or, more aptly, boring—Southern California
housewife and stepmother, Carol White, develops a mysterious illness that seems to be provoked
by the chemical toxicity of the world around her. In the early parts of the film, we see her move
through her mundane life–listlessly being made love to by her doltish husband, making inane
calls on the telephone, ordering a new couch, attending an aerobics class–often dwarfed by her
44
environment, easy to miss. After inhaling the exhaust from a truck in traffic, and the unexplained
nosebleed at the hair salon, Carol begins to experience a series of increasingly dire symptoms:
vomiting when her husband touches her, sleepwalking in the night, an asthma attack at a baby
shower, a seizure at the dry cleaners’. Carol is shy, awkward, bad at communicating, which
proves especially challenging for her doctors’ visits. Specialists tell her, as the young doctor told
Mamiya, that nothing is wrong. After seeing fliers at her local gym and, eventually, an
advertisement on television for Wrenwood, a retreat for people suffering from environmental
illness, she moves out of her San Bernardino home and into the retreat, a New Age space where,
unsurprisingly, both paranoia and dubious positive-thinking talk reign. At Wrenwood, Carol does
not “get better,” nor does she locate much by way of community, though she is affirmed
somewhat by those there who believe in the fact of her illness; instead, she becomes more and
more isolated as she grows increasingly frail, ending the film in a tiny, sanitized pod deep on
Wrenwood’s property, totally alone.
It may seem strange to examine these two films as ways of thinking about contagious
illness, because Cure is hardly about illness in the traditional sense and Safe is about an illness
that does not, within the film’s narrative, really seem to pass from one person to another. But
both films are deeply concerned with the way that time and space are reconfigured by the
revelation of the body’s precarity, its openness. Safe and Cure explore the ways that sickness,
and more specifically the threat of transmission, makes the body strange, creates duplicate and
duplicitous temporalities; and the ways that sickness, felt and read in the body, exists in its
earliest stages as a physical feeling, a psychical or intuitive feeling, and an emotional feeling all
at once. Dread, frustration, and uncertainty are not merely the feelings elicited by these films;
they form their backbone, seeping out of the narrative and into every frame.
45
Rather than mining contagious disease’s narrative potential to create a network of cause and
effect, these films take contagion itself as their focus: contagion as an affective and temporal
phenomenon, characterized by ambivalence, delay, anticipation, and suspense. Contagion—a
transmission of something formless and invisible from one open subject to another, a
transmission that is contingent on physical proximity and narrative continuity but irreducible to
any pattern or shape—becomes these films’ governing principle, both narratively and formally.
Neither film leads us to a satisfying conclusion; instead, they themselves come to feel
contaminated, thrown irreparably off course.
35
Cure and Safe grapple not only with the
challenges of visually representing contagious disease but of visually representing the feelings
contagion induces, feelings that are always about what is missing: the not-yet-here, the in-
between, the irrevocably lost. In so doing, this chapter will argue, they become curiously self-
reflexive documents: Cure and Safe reveal that the affective mechanisms of contagion work
much like those of the cinematic image, made legible only in and through the body in time.
For this reason, I organize this chapter around a phrase written by Carol White to the staff at
Wrenwood before her arrival: Suddenly, I find myself feeling sick. Innocuous and uncomplicated
though this phrase may be, it contains within it the three elements of contagion I want to explore:
its complex relationship to time, to identity, and to feeling. I offer some rephrasings: Suddenly
sick, I find myself feeling—in illness’ disruptive force we come face-to-face with sensation,
affect; or perhaps, Feeling sick, suddenly, I find myself—as we feel our way through illness, we
come to see ourselves more clearly.

35
Eli Clare describes the fantasy of cure as a fantasy of time travel; I will return to this in my
final chapter.
46
Contagion: the tear in our being
36

Before I can turn to the films, I must first attend to contagion, to better understand its
significance in terms of illness and disability studies as well as film theory. Conceptions of
contagion in the 20
th
and 21
st
centuries are inseparable from the development of modern
medicine writ large. Peta Mitchell has written extensively about the way that the development of
“medical history” as a modern field of inquiry produced an interest in the history of individual
diseases. Thinking of diseases as themselves having histories leads us to contagion: to tracing
illness’s movement and spread backwards in time and place.
37
This already begins to clue us into
the curious temporality of contagion: it is only ever apprehensible after-the-fact, but it is also
always on the move forward, away from the subject. The swell of infectious disease across the
20
th
century, and the arrival of HIV/AIDS at the end of it, certainly played a key role, too, in both
a growing scientific interest in understanding contagion and the increasingly commonplace use
of contagion metaphor in other fields, such as economics and literature.
38
Cynthia J. Davis
reminds us that “contagion is itself both a content and a method,” that is, both connotative of a
disease and its spread.
39
Contagion is at once an attribute and a process. The same can be said of
the sickness that hovers just beneath the word contagion: it, too, is both an attribute and a
process. That is, sickness only comes to be insofar as it is housed, attached to a subject; and yet,
in the case of the viral and otherwise contagious, it has a life of its own, a name of its own, a
history of its own. And it is in part for this reason—this collapse of two seemingly incompatible

36
I draw here from Henri-Jacques Stiker, who writes: “the disabled…are the tear in our being
that reveals its open-endedness, its incompleteness, its precariousness.” Henri-Jacques Stiker, A
History of Disability, trans. William Sayers (Ann Arbor: University of Michigan Press, 1999), 9.
37
Peta Mitchell, Contagious Metaphor (Bloomsbury, 2014), 17.
38
Mitchell, 18.
39
Cynthia J. Davis, “Contagion as Metaphor,” American Literary History vol. 14 no. 4 (2002):
830.
47
modes of being—that thinking about contagion leads to the question of signification. Mitchell
writes:
contagion is interesting not simply because it oscillates between the medical and the social
and the material and the cultural, but also because it highlights the problem of language: the
problem of communication and dissemination.
40

Contagion is at once meaningless—random, unpredictable—and meaningful, creating linkages
between people and communities, between symptoms and syndromes. Notably, the more
meaningless it appears to be, the more meaningful it becomes: Susan Sontag suggests that any
“disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in
significance.”
41
The more questions the disease leaves unanswered, the more the disease itself
takes the form of a question, the more it appears to mean—or rather, the more it creates a kind of
vacuum, a blank surface upon which all kinds of meaning might be projected. Contagion is
predicated on an understanding of the individual, bounded body, but also makes it impossible to
conceive of the body as ever totally discrete. These paradoxes—of time, of embodiment, of
signification—are what constitute contagion as a phenomenon and as an idea. They are
paradoxes that interest me because they lead us, time and again, to thinking about surface, about
traces and points of contact, about how something emerges into visibility and how visibility at
once leads to and confounds meaning—in short, cinematic questions.
Disability studies has also taken up the question of contagion as a way of thinking both about
human interdependence and vulnerability and as a way of understanding the fears and stigmas

40
Mitchell, 22.
41
Susan Sontag, Illness as Metaphor and AIDS and its Metaphors (Farrar, Strauss and Giroux,
1989), 58. She writes: “First, the subjects of deepest dread (corruption, decay, pollution, anomie,
weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the
name of the disease (that is, using it as a metaphor), that horror is imposed on other things. The
disease becomes adjectival...feelings about evil are projected onto a disease. And the disease (so
enriched with meanings) is projected onto the world.”
48
that accompany bodily difference. Kelly Fritsch and Anne McGuire put the connection between
disability studies and contagion quite beautifully: “which forms of embodiment are incorporated
into life,” they ask, “and which are put into quarantine or driven out of this vital fold?”
42
To
think about contagion is to think about what we necessarily share (in spaces, as species) and
what we refuse to. Margrit Shildrick, in Embodying the Monster: Encounters with the Vulnerable
Self, asserts that contagion is never just a material effect, never just a biological process.
Contagion in Western contemporary thought, per Shildrick, serves a discursive function that is
ultimately about the construction of the modern subject, a subject who is “ideally closed and
invulnerable”
43
but, failing to ever actually be so, is in need of protection at all times. She writes
that
“the normative construct of the self's clean and proper body is under constant threat, on the
one hand from the potential of internal leakage and loss of form, and on the other, from the
circulation of all those dangerous bodies—of women, of racial others, of the sick, of the
monstrous—who both occupy the place of the other and serve to define by difference the
self's own parameters…what may be menaced is not just the singular self, but a normative
category as a whole”.
44

The threat to bodily (and, by extension, subjective) integrity and unity is always twofold:
it comes from within and from without. Both are uncontrollable, unknowable, even as both are
constitutive of the self. Shildrick’s work, here and elsewhere, is particularly useful for the ways it
clearly illuminates the connections between disability theory and a great deal of twentieth-
century critical theory on the subject of difference and normativity.
45
Disability is not inherently

42
Kelly Fritsch and Anne McGuire, “The Biosocial Politics of Queer/Crip Contagion,” Feminist
Formations vol 30, no 1 (2018): ix.
43
Margrit Shildrick, Embodying the Monster: Encounters with the Vulnerable Self (London:
SAGE Publications, 2001), 76.
44
Shildrick, 75.
45
Here we can turn to Foucault in The Birth of the Clinic who is himself drawing on the work of
Georges Canguilhem, who, in The Normal and the Pathological (London: D. Reidel, 1978),
49
contagious—indeed, many disabilities are not, though many contagious diseases are, temporarily
or permanently, disabling—but, as Shildrick points out, the strong negative emotions it arouses
in the non-disabled point to social conceptions of the contagious that far exceed the bounds of
what is scientifically deemed threatening. Any condition that reveals the body’s vulnerability and
its susceptibility to change can thus be understood within the broader umbrella of a contagious
discourse, one in which, Shildrick writes, “our well-being, our very lives, are dependent then on
the maintenance of a self-protective detachment, an interval not only between ourselves and
evidently dangerous others—be they microbes, parasites, or infected human bodies—but also
between ourselves and the mere potential of risk.”
46
This interval, this protective gap, is a way of
sustaining the self/other binary, a way of sustaining a fantasy of bodily purity, but it is also,
perhaps, a site for possible play: a space marked as in-between, as necessarily indeterminate.
In an essay on Safe, Rose-Ellen Lessy wonders what might be gained by reading Safe as
producing or even residing in an impasse, in the directionless and irresolvable gap between
symptom and cure where knowledge and certainty fail (or fail to matter).
47
In an interview
released on the DVD of Cure, Kurosawa says: “what’s visible is definite, but the invisible part of

describes one of modern medicine’s key interventions as the establishment of a norm against
which all bodies were to be measured. For Canguilhem, the abnormal is in fact prior to the norm,
even if it appears as its effect; the subject of modern medicine is subjected to the search for
difference.
46
Shildrick, 76.
47
Lessy draws a comparison between the “impasse” invoked in Safe, the moments where
identity and knowledge prove insufficient, and arguments in feminist psychoanalysis: “Safe,” she
writes, “gives those of us thinking about physical suffering what Jacqueline Rose (1986) argued
psychoanalysis brings to feminism through “the concept of a divided subjectivity”: "the right to
an impasse” (p. 15). If the messiness of fantasy and the unconscious can be used to argue for the
right to identify incompletely, ambivalently, or not at all with particular forms of gender and
desire, perhaps diagnoses might be experienced with similar forms of ambivalence. Insofar as
diagnostic status can function as a vector of identification, why wouldn't it be possible to argue
for the right to a diagnostic impasse?” Rose-Ellen Lessy, “Feminist Treatment: Illness and
Impasse in Todd Haynes’ Safe,” Studies in Gender and Sexuality vol. 7 no. 4 (2006): 291.
50
space outside the frame should have some effect on the visible part captured in the frame. It may
be very subtle or it may be very strong.”
48
Bill Albertini writes that “outbreak narratives..[tend to
be] chock full of fascinating narrative holes—spaces that signal leftover anxieties incapable of
being allayed by the outbreak narrative’s teleology of containment.”
49
Emptiness is everywhere.
Contagion and the viral produce a particular form of absence, of non-being: they create and
demand spaces between living beings at the same time as their existence is predicated on
closeness and mutual exchange. And this necessary interplay between closeness and distance
helps us turn back towards film theory, towards the relationship of the spectator to the
contaminated body on the screen, always at “arm’s length,” so to speak. Shildrick identifies
practices of looking, in particular, as crucial to sustaining the illusion of safety:
“In view of…[its] potential leakiness across borders, the monstrous body is not just
deviant in itself, but is characteristically metaphorised [sic] as dangerously contagious,
capable of spreading its own confusion of identity. The function of the gaze, then, is in
part to arrest such a process by fixing the other at a safe distance, but even so, the
monstrous is no respecter of boundaries.”
50

For Shildrick, the gaze here is not primarily concerned with objectification, but with
containment: with creating a distance between the seer and the seen, and in so doing, fixing the
other as other and confirming the subject’s identity.
51
This is in many ways a foundational
argument in film theory: looking, or the thing seen, confirms the looker as the one who confers
meaning. In “Ideological Effects of of the Basic Cinematic Apparatus,” Jean-Louis Baudry,
drawing in part from Lacan, puts forth the thesis, as I discussed in my introduction, that the

48
Cited in Marc Yamada, “The post-Aum films of Kurosawa Kiyoshi,” Japan Forum, vol. 27
no. 4 (2015): 488.
49
Albertini, “Contagion and the Necessary Accident,” 443.
50
Shildrick, 73.
51
See also Rosemarie Garland-Thomson’s Staring: How we Look (New York: Oxford University
Press, 2009).
51
effect of wholeness produced by the cinematic apparatus itself produces a coherent viewing
subject. “Between the imaginary gathering of the fragmented body into a unity and the
transcendentality of the self, giver of unifying meaning,” he writes, “the current is endlessly
reversible.”
52
In conventional looking relations, therefore, there is a kind of contract in play: the
wholeness of the one sustains the wholeness of the other. There must always remain a clear
difference between them. And there is also a contagious relation between them: a possibility of
exchange.
53

But one of contagion’s dominant effects is a troubling of identity, a troubling that is central
to both Cure and Safe. Priscilla Wald, in her 2008 text Contagious: Cultures, Carriers, and the
Outbreak Narrative, considers the figure of the “carrier”—the one who, often unknowingly,
houses a contagious disease. She writes:
“Carriers were the dangerous strangers one encountered with alarming frequency in an
increasingly interdependent world, and they were the most precious intimates dangerously
estranged by the discovery of their carrier state. They made visible the contact that people did
not necessarily know they had had—items shared, spaces frequented—as well as those they
may not have wished to make known…. when carriers unwittingly caused an outbreak of a
communicable disease, the nature of the violation was as uncertain as the locus of blame.
They represented the question of culpability in the absence not only of intention but more
fundamentally of self-knowledge.”
54

Wald is interested in the ways that, historically, notions of contagion have given rise to a sense
of emergent community in the modern, globalizing world, and to people’s experience of
themselves as part of a population (even as that population is then fractured by the introduction
of risk). But I am specifically interested in what she says here about the carrier, who is always

52
Baudry, 46.
53
As Peter Wollen writes in Signs and Meaning in the Cinema (Bloomington: Indiana University
Press, 1969): “There is no pure cinema, grounded on a single essence, hermetically sealed from
contamination.” (153)
54
Wald, 16.
52
either the inescapable stranger or the familiar figure made strange, who makes contact—and not
just contact, but past contact, and thus in a sense, the past itself—visible where it would
otherwise have gone unseen. In the case of these two films, the “possible carriers”—Mamiya and
Carol—are figures whose lack of self-knowledge is literalized, as I will show throughout this
chapter: they are ambivalent, half-realized figures, uncannily passive, profoundly confused and
confusing. The lack Wald speaks of is in some sense universal—we cannot and do not know
what goes on inside our bodies as it happens, and contagious diseases show us that we are always
catching up to our bodily interior in some way—and Mamiya and Carol, totems of contagion and
illness itself, take this to an extreme: they are so diseased that they are not only blameless but,
over the course of the narratives, become increasingly unknowable. The more we see them, the
less we can understand them. By the end of the film, both have become completely
incomprehensible. Baudry writes: “both specular tranquility and the assurance of one’s own
identity collapse simultaneously with the revealing of the mechanism.”
55
The more we know
about the virus, the less we trust the image, and the less we know ourselves.

Feeling sick: feeling bad / bad feeling
What does it mean to feel unwell? I begin with this phrase because it allows me to think
about feeling in the two intertwined ways that sickness, in its earliest stages, provokes: physical
feeling—pain, discomfort, what have you—and emotional feeling (“I don’t have a good feeling
about this”)—dread, disgust, fear. Feeling, when it comes to sickness, evokes intuition, affect,
and bodily sensation, all at once, each type of feeling informing the others. Feeling unwell is
something that takes place in the present, but it has a complex temporal dimension: it announces

55
Baudry, 46.
53
a beginning, an onset, and thus points to the possibility of a future in which one feels worse. In
the production of that beginning, subject and body meet: the sensations of the body are
apprehended, named. And to feel unwell—to not feel well—might also suggest a different kind
of relation, a psychic one, which is to say, a failure or inability to feel, a lack of access to feeling.
Thus understood we have the opposite of the first kind of feeling unwell, in which feeling
dominates, overtakes the subject. Here, instead, we cannot quite feel. Or is it that we cannot
know what we feel? Because feeling itself is always positioned before—before speaking, before
knowing. And so in a way the syntactical paradox of not feeling well is particularly accurate in
that it names both illness’s physical dimension—a bad bodily sensation—and its emotional and
intellectual one—a state of uncertainty and a sense of distance between self, body, and language.
But then there is yet another kind of feeling—the sensorial one—which is the most present of all,
the moment of contact, the moment also at which I come into the fullest and cleanest articulation
of bodily boundaries, the surface of whatever I am not announcing to me whatever and wherever
it is that I am. Cinematically speaking, feeling is also complicated: where is it? In the spectator,
embodied, or in the narrative? Is feeling that which fills and activates the necessary space
between screen and subject, alive in the moment of viewing, or is it always-already there, held in
the narrative to which the screen image endlessly gestures?
To return more precisely to the topic at hand: what does contagion feel like, and what does
that feeling look like? Mamiya and Carol might best be described as vectors: hardly agential,
they serve as the films’ empty centers, the sites around which other objects are endlessly
repositioned, the carriers of a psychical and physical force much larger than themselves. These
are characters who do not become ill or infected: they become illness, become infection. This
manifests, in the films, as feeling bad and bad feeling: moments of unease and discomfort that
54
are also failures of feeling, failures to respond appropriately, failures to make contact. And this
will bring us into thinking about these films’ curious, unsettling affects, and the affects that
contagion induces; and it will, by this chapter’s end, bring us back to the unknown and unfelt self
that illness reveals. Susan Potter writes that in Safe, Haynes suggests that “identity can be
regarded in some sense as illness…[it is] an attempt to provide coherence to and explanations for
a body of symptoms…identity is produced from a kind of vacuum, a fantasy of the mastering of
a space that threatens to annihilate.”
56
In illness (to recall Sontag above), as in identity, as in the
apparatus, the task is of somehow rendering coherent the inherently incoherent. It is of covering
over a deeply threatening emptiness with an equally threatening surface, like a sheet thrust over a
corpse.
Much has been made, among other things, of Safe’s status as AIDS allegory, of its racial
and class critique, of its satirization of Western medicine’s misogynist history.
57
But I am
interested here in Carol’s blankness, her blandness, and her illegibility, which I take not as a
simple reduction of the sick subject (this is not uncommon in more mainstream narratives, in
which to be sick is to lose all other qualities) but instead as a symptom in itself. Lessy writes:
“[In Safe] the filmic machinery cannot use illness to provide Carol with psychic interiority. And
here, Safe departs radically from the predictable disease melodrama: disease does not provide

56
Susan Potter, “Dangerous Spaces: Safe,” Camera Obscura, vol. 19, no 3. (2004): 148.
57
See: Julie Grossman, “The Trouble with Carol: The Cost of Feeling Good in Todd Haynes’
Safe and the American Cultural Landscape,” Other Voices, vol. 2, no. 3 (2005); Cüneyt, Çakirlar
“Cinephilic Bodies: Todd Haynes’ Cinema of Queer Pastiche,” Kult no. 1, vol. 1 (2011); Joan
Faber McAlister, “Unsafe Houses: The Narrative Inversion of Suburban Morality in Popular
Film,” Liminalities vol. 4 no. 1, 2008; Anat Pick, ““No Callous Shell”: The Fate of Selfhood
from Walt Whitman to Todd Haynes,” in James Morrison, ed., The Cinema of Todd Haynes
(London: Wallflower Press, 2007); Amy Taubin, “Nowhere to Hide,” Sight and Sound vol. 6, no.
5 (1996), and José Esteban Muñoz, “Dead White: Notes on the Whiteness of New Queer
Cinema,” GLQ, vol. 4 no. 1 (1998), among many others.
55
depth; diagnosis does not confer meaning. For in Safe, illness and interiority are coextensive not
in their elaboration of meaning but in their resistance to representation.”
58
Disease does not
reveal depth: in fact it reveals surface, produces surface. Illness allows the surface to come into
being through its inscription of it, through its slow spill across it. The impulse—whether
scientific or narrative—to read illness as a revelation of interiority (both physiological and
psychic) is not incorrect so much as it reveals, in its inevitable shortcomings, the surface — the
membrane, the barrier, to return to these films’ visual obsessions—that, as the site of
representation and of reading (the skin, the screen), cannot itself be represented. This is one of
the ways that contagion cinemas produce a meta-cinematic object: they become, perhaps even
against their will, studies of the limits of representation by becoming studies of the sites of
representation.
Carol does not quite know how she feels, or at the very least, she cannot articulate it. After
several months of symptoms, she visits a psychologist. Haynes frames her dead center, primly
seated on the couch: here, finally, we may think, is the confessional moment.

58
Lessy, 296.
56

Figure 20. Carol sits at the psychiatrist's office (Safe)
The doctor’s first question is: “do you work?” He clearly means are you employed, but there is a
sense that the question is more fundamental: are you functioning, how do you work, what in you
doesn’t work as it should? “No,” Carol stammers, “I’m a house…I’m a homemaker?” Carol
might as well be a house, animated only by what enters her.
“How long have you been feeling…unwell?” he continues. Carol continues to flounder, long,
dead pauses between her words. Slowly, the camera zooms towards her. “What’s going on in
you?” he tries, again. She stares politely ahead. We long for her to say something, but we do not
know what. The camera’s movement, like the psychologist’s question, does nothing to break past
the surface of either Carol or the image itself. Seeing does not mean more knowing. It just means
more seeing.
The scene that follows is the first in which Carol’s illness becomes truly visible, truly public.
The camera continues its slow creep forward, but now we are at a baby shower,
59
Carol and the

59
The irony of this particular choice of setting should not be lost on us: not only have we just
seen her actively distance herself from motherhood, in the previous scene when she is asked
57
other women in flouncy dresses on a cream-colored leather couch, opening gifts and exchanging
small talk so small it barely registers as language. Carol excuses herself to go to the bathroom,
and for the first of two key instances in the film, she stares at her own reflection. (Despite the
many mirrors in her bedroom, which hint at her own viral qualities—an endless multiplication of
self—we have not yet seen her truly gaze upon her own image, except for the brief moment in
the hair salon; she is, much like Mamiya, relatively uninterested in herself, which makes sense if
we understand her own being as viral—as entirely relative.) She stares, glumly, at her face in the
mirrored door, and then slides it open, erasing herself completely—a kind of live wipe transition.
Her own flattening, her own transformation into pure cinematic image, has truly begun.

Figure 21. Carol sees herself in the mirror (Safe)

about her child and explains only that he’s “her husband’s little boy,” but the baby shower also
occupies the strange gap between life and nonlife: between conception and birth, when the baby
exists as an idea, but little else. It is a celebration of the future that is already, presumably, on its
course.
58

Figure 22. Carol touches her hair (Safe)

Figure 23. Carol slides open the door (Safe)
Eventually, she makes her way back to the party. The women gather to open a particularly
large gift. Carol sits at a slight remove, someone else’s child on her knee. Amid the crinkling of
59
wrapping paper and the appropriate oohing and ahhing, the camera begins, again, its creeping
zoom towards her. Carol’s mouth is half-open, suspended somewhere between a smile and a
grimace. It is, as always, hard to read. Her breathing, we soon come to hear, has gone ragged,
strained; she is gasping, long, rasping hiccups. She cannot breathe. A note on hiccups: in Plato’s
symposium, Aristophanes, importantly (or—I should say—unimportantly), has the hiccups. In
The Forms of the Affects, Eugenie Brinkema takes us through the ways these hiccups have been
interpreted:
60
she cites in particular Mladen Dolar’s assertion, following Kojève, that the having
of the hiccups “means that it means.” This is a reading in which the hiccups have a discursive
significance, understood as “the hole in the Real around which signification is organized.”
61
In
not meaning, for Dolar and others, hiccups (or retching, or any other involuntary vocalized act)
provide the “zero-point” that allows the meaningful (in language) to be somehow ordered. In this
wordless, arrhythmic bursting-forth of Carol’s symptoms, which will be misread throughout the
story as signs of something else, what we actually see is the meaningless in action, announcing
itself, unsettling everyone.
To return to the scene: The little girl on her lap looks increasingly terrified: it is not just
Carol’s illness, then, that we are witnessing, but for the very first time, her effects on others.
Eventually, the other women take note, and run to her side. The screen fades to black as Carol’s
choked gasps get louder; then, to our great surprise, a voiceover, the film’s first, begins. “I am

60
Brinkema writes: “A rush of air that chokes, a rush of choking air. Aristophanes’ eructating
hiccups constitute the most famous bodily discharge in the history of philosophy…much has
been written about Aristophanes’ spasmodic glottal upset in Plato’s Symposium, the intaking
releases so violent that he is incapable of making his speech in the prescribed order of
philosophical declamations, and those interpretations are much focused on giving an account in
relation to the twin pillars of philosophical reflection: either the cause of the coughs or the effect
of the involuntary breaths.” (117)
61
Brinkema, 119.
60
Carol White,” she speaks, as the camera pans across photographs of her, many flat Carols patient
in their frames. She is writing her first letter to Wrenwood. Suddenly, she explains, she finds
herself feeling sick.
*
In Cure, Mamiya clearly feels no remorse for his actions (and though we may feel he
should, to return to Wald’s notion of the carrier, he has technically inflicted violence on no one).
But, more importantly, Mamiya is deeply, endlessly infuriating. Of course, he is responsible for
horror of the highest order—not only for bloody, gruesome murders but for making murderers of
those who would not otherwise be (and several of his victims, upon realizing what they’ve done,
attempt to take their own lives, saddled with guilt)—but he is not a diabolical, scheming figure,
taking pleasure in his crimes or his cleverness. Quite the opposite. He is difficult in the tradition
of the adolescent boy: slumped over, rolling his eyes, exasperated and exasperating. Indeed, he is
infuriating in a similar way to one of Western literature’s most iconic figures: Melville’s
Bartleby, whose “I would prefer not to” famously drove those around him to the edge. Mamiya’s
inexplicable and lasting presence, his simple refusal to provide clarity for anyone around him, his
insistent inaction, provokes a chain of reaction that escalates quickly from irritation to insanity.
When Mamiya refuses, for example, to answer detective Takabe’s questions in the interrogation
room or the prison cell, we get the sense that it isn’t because he’s trying to hide something; he
simply seems uninterested.
Even once more of his past becomes clear—his interest in rarely-studied theories of
mesmerism, his past as a psychology student—Mamiya’s motives never come to light. We may
be able to compile information about him, the film suggests, but we can not know him. Learning
more about an illness does little to allay its symptoms; learning about the history of disease does
61
not revive the dead. Mamiya’s inscrutability is the flat, penetrating affect of the virus itself.
Sianne Ngai opens her book Ugly Feelings, which I will turn to in more detail in just a moment,
with a lengthy discussion of Bartleby and his “powerful powerlessness,” the way that his
illegibility “foreclose[s] the possibility of sympathetic identification altogether,”
62
but most of all
what she deems his (and his story’s) “suspended agency”: for it is his inaction that operates on
the world, his lack of discernible interiority that provokes violent emotion and, importantly, the
urge towards expression in those around him. Melville’s story, for Ngai, is the key in to
understanding “ugly feelings,” feelings that are “explicitly amoral and non-cathartic, offering no
satisfactions of virtue, however oblique, nor any therapeutic or purifying release.”
63
Unlike grief,
fear, elation, etc., these are affects that linger, that are out of proportion, that lead nowhere. They
are, Ngai argues, affects that bring us into direct confrontation with our social and bodily
powerlessness.
In an article published in Parallax in 2005, Dorian Stuber suggests that Carol White’s
repeated inability to respond appropriately to her circumstances (we might say, to feel it
correctly)—he cites, in particular, an early scene when, already beginning to feel a little “off,”
Carol fails to laugh at her husband’s co-worker’s lewd joke at an intimate dinner—make her a
Bartleby-esque figure: Bartleby and Carol’s refusals, he writes, “are refusals beyond compare,
refusals that eschew resistance, but, through that passivity, are all the more subversive,
particularly of habitual notions of what it means to be.”
64
A passive refusal turns all being

62
Ngai, 33.
63
Ibid., 6.
64
Dorian Stuber, “Patient Zero? Illness and Vulnerability in Todd Haynes’ Safe,” Parallax, vol.
11, no. 2 (2005): 89.
62
outward, forces us to reckon with being as becoming, as effect. A being defined by refusal is a
being that is always in relation.
What to make of these three vastly different Bartlebys? What I want to argue here is that
Cure and Safe traffic in the ugly feelings particular to contagion, which, despite its proximity to
illness, is not quite illness: it is its before and after, its life beyond the body and the subject. It is
felt as anxiety, as frustration, as waiting, as regret. The viral, famously, does not discriminate.
Contagion poses questions whose answers bring no great relief. In these films, then, the lack of
satisfying narrative closure or even of narrative direction is inevitable. To be any other way
would be to betray the subject at hand. These films could have been simple whodunits, refusing,
as so often happens, to face the reality of illness in all its complexity, all its uncertainty.
Fortunately (or unfortunately), they would prefer not to.
*
Roddey Reid considers Safe’s likely “irritated viewer,”
65
perpetually scanning the film’s
surface, and Carol’s body, for signs that will never quite appear. In Ugly Feelings, Ngai explores
irritation as a mood that undermines the ideal of “total intelligibility,” because it is either
objectless or has an undifferentiated, total object (everything becomes irritating).
66
Irritation, per
Ngai, is flat and ongoing: it is defined in part as a duration. Moreover, citing Aristotle, Ngai
notes that irritation is always felt in the wrong amount: it is either a failure to become truly upset,
or a once-righteous anger that has long overstayed its welcome. Either way, Ngai notes, it is
superficial, which is to say several things at once: that it lacks depth, and by extension, meaning;
that it has something to do with the world of appearances; and, most importantly, that it takes

65
Roddey Reid, “UnSafe at Any Distance: Todd Haynes’ Visual Culture of Health and Risk,”
Film Quarterly, vol. 58, no. 3 (1998): 38.
66
Ngai, 180.
63
place at or on the surface, that is, on the outside, at the point of contact. And to speak of irritation
as a physiological occurrence is nearly always to speak about the skin, and more precisely, a
sensation produced by contact—either an inappropriate or excessive contact.
67

Carol is presented to us as deeply superficial, in that first and most colloquial sense, from
the film’s start. Her only concern is the color of her new couch; when she visits her friend, who
is grieving her brother, it doesn’t take long for the conversation to shift to the benefits of an all-
fruit diet; her only activities, it seems, are going to the gym and the hair salon, and
accompanying her husband to his business dinners. Carol’s whole world is about the careful
maintenance of appearances. But her flatness is also almost immediately irritating, to us and to
others: to the woman who says, her voice sour with frustration, “You know, Carol, you just don’t
sweat,” in the locker room after their aerobics class; to her husband, who only shows concern for
Carol’s health when she cannot fulfill her “wifely duties” (having sex with him, charming his
colleagues at dinner). Carol may not be as straightforwardly irritating as Mamiya, but she, too,
remains an unblemished (un-sweaty)
68
surface, shallow, made real to others only through
contact—through her relation to them, which is tenuous, at best.
Ngai’s “ugly feelings” are affects that are often experienced partially or passively, and that
are thus inconclusive, potentially endless: feelings like irritation, anxiety, stupor—responses, she
says, to the perceived encroaching of the world. For Ngai, these feelings—which she also terms
“minor affects”—are characterized by a “systematic problematization of the distinction between

67
Ngai notes that irritation is “defined…by its very liminality as an affective concept (weak or
mild anger), [as well as its] unusual proximity to a bodily or epidermal one (soreness,rawness,
inflammation, or chafing).” Ngai, 22.
68
And sweat, of course, is a movement of the body’s interior moisture outwards: it is both a
physiological response (to exertion, heat) and a psychological one (to nerves, terror).
64
subjective and objective enunciation,”
69
a tension between “psychological interiors and bodily
exteriors”
70
that produces both political and aesthetic ambiguity–these are feelings that sit at the
surface of the self, at our points of contact. They mediate, she writes, between the personal and
the political: between the subject and the world into which the subject has been thrown. Why is
this relevant? First, because this problematization—the making-vague of the subject, the
evacuation of the interior/exterior split and all of its ontological and epistemological
implications—is, I would argue, at the heart of any representation of mysterious and contagious
illness, and also, at least where cinema is concerned, because it is a problem of form and of
representation: that is, a semiotic problem.
I want to pause for a moment here to think about the words “cure” and “safe”. All language
requires other language for its definitions, but these are words that immediately point to this
fact—one is cured of, one is safe from. They both gesture towards a danger and to an emergence
from it—one temporally (cure as endpoint) and one spatially (safe as haven)—and thus
immediately point to practices of separation, demarcation, or difference. Notably, in the films
themselves, the impossibility of this separation is the primary narrative force: in Cure no
character is ever clearly unwell enough to become clearly cured or curable; in Safe there is no
location far enough outside of the world to be safe. Curedness and safety also require a subject,
but they are not located within the subject. A cure is given (if one “gets well” of one’s own
volition one is not cured), safety is obtained (to be safe is to recognize at all times the possibility
that one can become unsafe).

69
Ngai, 20.
70
Ibid., 21.
65
This complex relation to the subject takes on new light in terms of thinking about feeling.
Sianne Ngai notes, following Grossberg and Massumi, that some studies of affect have
distinguished between affect and emotion by suggesting that where emotion requires a subject,
affection does not.
71
The same can be said of the distinction between sickness and disease. To be
sick is to experience one’s own body, its limitations, its secretions, its sensations; a disease
exists, diffuse, in the world of medicine and objectivity, in the water, in the air, in the natural
world, in one body or another. Cure and Safe are full of straightforwardly subjectivized
characters (which, ironically, makes them flat too, in their own ways—easy to read, clearly
motivated), except–vitally–those right at their center, mysterious, unsatisfying figures who only
seem to exist in relation. And that emptiness leaks out, touches everyone around them.
Brinkema begins The Forms of the Affects with an interrogation of the droplet that rolls down
Marion Crane’s face immediately after her death in Psycho. Is it a tear, or merely the last of the
water from the shower? If it is a tear, it is an impossible one (much like Stiker’s tear in our being,
also an impossible reality): “a tear,” she writes, “that does not have a body.”
72
Either way, what
it is and what it means are insistently unclear. All we can know is that the tear/not-tear is there, is
present, and that it glides along the surface of the face and the screen—that it is animate.
Brinkema goes on to wonder if the tear can be read in terms of a Deleuzian “auto-affection,” as
dwelling in the fold where the meeting of interior and exterior allow for the emergence of a
relationship of self to self.
73
For Brinkema, Deleuze’s framework is a useful way for thinking
affect not as a release from within nor an incursion from without but instead as “a self-folding

71
Ngai, 26.
72
Brinkema, 22.
73
Ibid., 23.
66
exteriority that manifests in, and as, textual form.”
74
The tear, much like the moments of spill in
Safe and Cure, signals a moment of happening that is voided of a subject at its center. I want to
propose, here, that contagious illness can also be thus understood: sitting as it does at the exact
point where the body’s inside turns into its outside, and vice versa, it has a kind of life that is
somehow both attached to and independent of the subject, and for this reason to depict it is
necessarily to enter into a kind of self-conscious formalism, a play with the image itself.
If Carol was able to wipe herself out of the image, Mamiya, too, is coded as explicitly
cinematic. Near Cure’s end, in Mamiya’s locked hospital room, somewhere between sickroom
and jail cell, Takabe comes to visit him in search of further answers, but also to let him know
that they have finally figured out who he is (since, as a purported amnesiac, he has not offered up
any identifying information just yet). The room is dim and sparse, save for a small room to the
side with a bathtub and sink, which is brightly lit; it has no door, and its wide entryway,
combined with the stark contrast in lighting, gives it the visual texture of a screen, an image
projected against the wall. Takabe faces the room, and tells Mamiya that they now know his
name.

74
Ibid., 25.
67

Figure 24. Takabe visits Mamiya in the hospital (Cure)

As in the case of Haynes’ slow zoom, however, this new information reveals nothing. Mamiya
is, as usual, unmoved, which makes Takabe increasingly anxious. Eventually, he crosses the
threshold of the little room, and as he does, he asks Takabe a question that reveals that he knows
a great deal more about the detective than the detective does about him: he asks about his wife’s
illness. Takabe’s ambiguously sick wife, to whom I shall turn in the next section of this chapter,
is the character we first meet in the film, and though she is not technically central to the
narrative, she is a key part of it, a structuring force whose absence haunts the film’s every frame.
68

Figure 25. Mamiya talks back (Cure)

Having thus unsettled Takabe, Mamiya begins another attempt at hypnosis. As in the other
instances of hypnotism we have seen him enact so far, Mamiya begins by asking questions,
questions whose answers are already contained or implied in their structure (your wife’s ill, isn’t
she? Isn’t it difficult, caring for her? Which are you really, the husband or the detective?). In this
way, he takes on the role of the doctor, the diagnostician I have already discussed. Takabe is, of
course, better prepared for this process than the others were; he is able to avoid falling entirely
under Mamiya’s spell. But nevertheless, Mamiya gets under his skin, so to speak: “there is no
real you,” he says, wryly, which, ironically, is Takabe’s most vulnerable trait—the real him,
then. Takabe quickly becomes hysterical, pacing back and forth.
69

Figure 26. Mamiya and Takabe talk (Cure)

Pounding his fist on the table, he confesses in frustration: “I was taught never to show emotion,
even with my family.” Mamiya’s flat, unchanging affect has sent Takabe into throes of emotion
unlike any we have seen the typically stoic detective display thus far. Telling Mamiya his own
name led nowhere; there is no way to classify him, and in classifying him contain him, and in
containing him destroy him (this is the fantasy of modern medicine); and so all that happens is
that the contours of those around him are more and more clearly defined in contrast. Mamiya’s
refusal to be reducible to information turns everything into image. By the end of the scene, it is
Takabe who is standing in the little room.
70

Figure 27. Takabe's outburst (Cure)

Figure 28. Takabe enters the chamber (Cure)

71
The screen-room here becomes a site of unfulfillable desire, of failure to communicate. Takabe’s
own suppression of his emotions is summoned to the surface by Mamiya’s unflinching calm.
Identities here are changeable, exchangeable. To put it in Baudry’s terms: the revelation of the
mechanism leads to a collapse of the self. There is no real Takabe; there is no real Mamiya.
Albertini suggests that our pleasure, in watching films about contagion, is an “ambivalent
pleasure produced not through the containment offered by intact borders but by way of the
exploration of borderlessness.”.
75
The fantasy and fear provoked by this movement in and out of
the image is analogous to the shuddering affect of contagion: the body extends beyond itself,
mutable, fluid, vulnerable on all sides. At the end of the scene, water begins to leak from the
rooftop onto the table, and Kurosawa’s camera lingers again on the spill, this time blackened
with soot, contaminated.

Figure 29. Dirty water leaks across the table's surface (Cure)

75
Albertini, 446.
72
Albertini continues: the outbreak narrative “pulses with anxiety over the porous body in part
because it locates the porous body within a complex system over which the epidemiological gaze
struggles to establish control.”
76
This was true of Carol and is true of Mamiya. In Cure’s final
moments (once it is clear that there will be no answers), which foreground the experience of
looking-nowhere—the camera lingers in empty rooms, flickers across time, and eye-lines fail to
meet—the radically destabilized gaze that has been encroaching on the film bit by bit has finally
come to swallow it whole.

Suddenly: contagion and confounded time
This metacinematic turn, the way that films about illness and disability become films
about filmic signification, is what I am in essence arguing across this project, but perhaps most
specifically in this chapter. Disability scholars Sharon Snyder and David Mitchell have argued
that “deficiency inaugurates the need for a story”
77
; for them, ill and disabled characters—
characters with marked bodily difference—effectively materialize the “problem” that drives
narrative writ large, the lack, put otherwise, that storytelling of any kind seeks to resolve. I want
to consider now how these films are driven: how they are spatiotemporally structured.
In Cure, what appears, on the surface, to be a networked, cause-and-effect story—both
for the characters, as the detectives struggle to understand the relationship between Mamiya and
his victims (and their victims), and more structurally, in terms of the film’s omniscient, multi-
pronged plot, that brings us at different times into Takabe’s professional life, his personal life,
and Mamiya’s nightmarish, leaky world—turns out to be concerned primarily with the flows and

76
Albertini, 449.
77
Sharon Snyder and David Mitchell, Narrative Prosthesis: Disability and the Dependencies of
Discourse (Ann Arbor: University of Michigan Press, 2000), 56.
73
spaces in between its characters, the passage (or jump) from one to the next and back again.
There is no sense to be made of the big picture; there is only movement, only the flimsiest of
contact, only transit. This network, both of narrative and of infection, is anti-directional: just a
big cluster of connections hovering in an eternal present. In the film, we are shown endless
scenes of hallways, passages, movement. And yet, as in a dream, the characters persistently
appear and disappear, here and there, robbed of befores and afters. Take, for example, our first
introduction to Mamiya in Cure, on a beach.

Figure 30. An empty beach (Cure)
74

Figure 31. A stranger sees someone (Cure)

Figure 32. It is Mamiya (Cure)
75
The shot-reverse-shot allows him to appear as if by magic, although the film wryly
undercuts its own visual trickery by showing us, seconds later, that Mamiya himself has no idea
where or who he is. He wanders, confused, towards a seated stranger, whom he will eventually
hypnotize into murdering his wife. He asks where he is, twice, mere seconds apart; “I don’t
know who I am,” he proclaims, and then immediately collapses. His blankness is his disease and,
as we will soon discover, the source of his power. Mamiya’s spectral, eerie ability to appear with
no sense of a past—“tell me about yourself,” he begs of his victims, before he fuses his mind to
theirs—is, I think, itself a play on cinema’s ability to present us with a moment divorced from its
past and its future; the metonymic implications of the cinematic image are laid bare in the
construction of a character whose defining trait is his inability to extend intelligibly beyond the
confines of the image, either in the sense of a remembered history or a possible future, and thus
points incessantly to a constant and unstable now. Amnesia, like contagion, names something
that is necessarily invisible, necessarily lost; it, too, is a content and a method. Here, as
throughout the film, form and content align precisely in their refusal to signify neatly. Both
Mamiya and the image insist on their own blankness, their own openness. Contagion is thus
reframed not as the passage of some invisible entity from one stable body to the next but, taking
from Albertini, a revelatory exploitation of the holes and empty spaces that hide within our
wholeness, our materiality, and that keep the body endlessly vulnerable, endlessly in wait,
suspended in time.
It is because of this suspension that the two films function as what Deleuze calls the
“cinemas of the body,” films that present us with what he, citing Simondon, describes as “space
before action…which does not point to an indecision of the spirit, but to an undecidability of the
76
body.”
78

⁠
But before I get to Deleuze and the undecidable or unknown body, which will lead me
back to sick cinema via not only to the question of time (suddenly) but eventually of identity (I
find myself) and affect (feeling), I must first make clear what this temporality is, what is specific
to illness about it, and how it comes to mean in the ways that it does.
Contagion produces two intertwined temporalities. First, there is the timeline of the
contagious illness itself, the process of its movement over time across bodies and space. This is
an unpredictable and erratic temporality, but it is also, to an extent, linear, genealogical: the
illness moves from body 1 to bodies 2 and 3, from 2 and 3 to 4, 5, 6, and 7, and so on. Second,
there is the timeline of the illness as it manifests within each individual body. Showing up first as
symptom with cause unknown, and becoming illness upon being thus named, the contagious
illness (like non-contagious illnesses) has a more complex and heterogeneous temporality. The
symptom hints at, but does not reveal, both what has already begun and what is to come.
Residing, therefore, at once within an individual body and in what surrounds it, in the present,
past, and future simultaneously, always on the move but only traceable after-the-fact, visible
only in its effects (on the body) and its origins (the microbial), contagion reveals a deeply
ambivalent relation to time and to image.
Cure and Safe both traffic in this strange, uneasy, recursive temporality, one full of
overlapping beginnings, a present that only appears as vanishing point, an endlessly mutable
past. Where did Mamiya come from? When did Carol’s illness truly begin? They also each, in
different ways, exploit the film image’s ability to confound through (and not despite) its
literality. By literality, I mean the way that the film image at once demands interpretation and

78
Gilles Deleuze, Cinema 2: The Time-Image, trans. Hugh Tomlinson and Roberto Galeta
(University of Minnesota Press, 1989), 203.
77
fails to readily signify. To return to another foundational work of film theory: as far back as 1969
Peter Wollen concluded, near the very end of Signs and Meaning in the Cinema, that a film text
was “a material object whose significance is determined not by a code external to it,
mechanically, nor organically as a symbolic whole, but through its own interrogation of its own
code.”
79
There is, to return to Shildrick, a threat in the text, always, of “internal leakage,” of loss
or reconfiguration of form. And in these films, we can see how the disease-body is the undecided
body par excellence: the body made aware of its unending changes, its endless foreignness to
itself and its urgent, fruitless search for its own meaning.
A turn to the temporal dimensions of illness is well served by Foucault’s historicizing eye.
In The Birth of the Clinic; An Archaeology of Medical Perception, Foucault, drawing heavily
from Canguilhem, suggests that one of the key transformations that produced modern medicine
as such is the turn towards what he calls “totalization”—the shift away from the encyclopedic
model, in which scientific knowledge about one thing or another, lacking though it may be, is
always understood as “exhaustive and closed.”
80
Diseases went from existing in an enclosed,
mappable schema, separate from one another, to being understood as phenomena that fit into a
larger chain of signification, a set of rules of nature that governed all things. The production of
medical knowledge became, primarily, the act of placing events in relation to one another.
Rather than referring to a specific circle of knowledge, the medical gaze, Foucault suggests, now
found cohesion in an “open, infinite, moving totality, ceaselessly displaced by time,”
81
a phrase
that is itself strikingly cinematic.

79
Wollen, 162.
80
Michel Foucault, The Birth of the Clinic (Routledge, 1997), 28.
81
Ibid., 29.
78
This parallels the move Foucault traces from a medical practice rooted in concepts of
health–in which the primary aim of the doctor is to restore a feeling of well-being in the ailing
patient–to one in which the doctor’s role is to measure the body of the patient against a set of
established norms and locate sites of deviance. Foucault notes that in this second shift, “the sign
no longer speaks the natural language of disease; it assumes shape and value only within the
questions posed by medical investigation…it is no longer that which is spontaneously stated by
the disease itself; it is the meeting point of the gestures of research and the sick organism.”
82
In
the same way as Ngai’s ugly feelings, clinical knowledge sits uneasily between the subjective
enunciation—doctor, I am feeling unwell—and the external, objective one that legitimizes it (i.e.,
the prognosis). For a body to be properly ill or well is thus not a question of how that body feels;
it is simply about whether the body, in its examination, corresponds correctly or incorrectly to a
preexisting rubric. (Both Haynes and Kurosawa pointedly critique this: in both Cure and Safe,
doctors tell their patients that nothing is wrong, when we know quite the opposite to be true.)
There is a third shift I want to consider alongside these first two. Foucault argues that the
invention of the autopsy fundamentally changed the medical understanding of illness. If the body
could be opened up and examined in a way that was never possible while a patient was alive, and
if traces of the illness could be uncovered in the dead body—that is, the body that was no longer
ill, illness belonging to the kingdom of the living—then, Foucault writes, two things happen:
first, the ill body comes to take on a new association with death;
83
and second, the body begins to
be understood as a surface and a depth. Rather than mapping time (connecting symptoms to one

82
Foucault, 162.
83
Foucault continues on the subject of the autopsy: “disease,” he writes, “loses its old status as
an accident, and takes on the internal, constant, mobile dimension of the relation between life
and death (155). The corpse, once understood as the end of information, is now its beginning. If
that is so, then all of the bodily states that precede being-corpse are a part of its construction.
79
another), the contemporary physician must also map “a volume,” Foucault says, the volume of
the body as something material that can be surfaced, excavated.
84
Here I want to recall that each
murder in Cure, however it is carried out, involves the carving of an X shape into the corpse
once it is dead. This carving is as a baseless, unmotivated act, one that serves only to confirm the
deadness of the corpse and remind us of its fragility: a search for form, an imposition of form, in
the formless void of death. Occasionally, Mamiya’s victims see or draw Xs before they kill. The
X here is a symptom, the visible trace left by the invisible ailment, but it is also an omen of what
is yet to come.

Figure 33. The young doctor sees the ominous X (Cure)

The X, Akira Mizuta Lippit writes in his work on Cure, is “a signature of sorts, an operation that

84
Foucault addresses the way that the introduction of the body’s volume changes not just the
practice but the nature of the doctor’s reading: “The problem, then, is to bring to the surface that
which is layered in depth; semiology will no longer be a reading, but the set of techniques that
make it possible to constitute a projective pathological anatomy.” (162).

80
opens the body of the other surgically, and also an erasure.”
85
The X, like the symptom, has a
phatic quality, but it is also an interruption of the body’s integrity, of visibility and signification.
In a relatively little-cited essay called “Semiology and Medicine,” first published in 1972 in
Les sciences de la folie, Roland Barthes turns his attention to the question of semiology in the
medical field. Drawing in part on The Birth of the Clinic, Barthes investigates the connections
between the linguistic sign and the medical sign, which requires him to begin with the
deceptively simple question: what is the sign, in the world of medicine? Is it, as one might think,
the symptom, which itself has two component elements—the symptom as indicated by the
patient, and the symptom as it is read by the physician? The symptom, he suggests, is in fact
merely an “apparent reality, or a real appearance”;
⁠ it is thus phenomenal, not yet semantic,
having not yet “reached the nature of signs.”
86⁠ Put simply, the symptom in and of itself resides
somewhere prior to meaning, even if we often find ourselves jumping ahead, metaphorizing it,
imbuing it with a semantic function. Barthes describes the symptom as “the morbid phenomenon
in its objectivity and its discontinuity.”
87
He draws further on Foucault’s work to argue that “the
physician…transforms, by the mediation of language…the symptom into a sign,”
88
meaning here
that in the process of being read by the physician, the symptom acquires an exterior (its
materialization in or on the body) and an interior (the disease to which it points). Barthes goes on
to claim—and this is of particular interest for me—that the medical sign “has a triple function: it
is anamnestic, it says what has happened; it is prognostic, it says what will happen; and it is

85
Akira Mizuta Lippit, Atomic Light (Shadow Optics) (University of Minnesota Press, 2005),
144.
86
Roland Barthes, “Semiology and Medicine,” in The Semiotic Challenge (Hill & Wang, 1988),
204.
87
Ibid., 204.
88
Ibid., 205.
81
diagnostic, it says what is happening.”
89
This triple-function
90
for Barthes means that the medical
sign shares something with syntax, which he describes as a way of dominating time through
form. Rather than signifying on its own terms, the medical sign signifies through its
transformation of the temporal, through its position in time.
Barthes, like Foucault, informs Paula Treichler’s oft-quoted assertion (in How to Have
Theory in an Epidemic, her key work on HIV/AIDS) that “no matter how much we desire, with
Susan Sontag, to resist treating illness as metaphor, illness is metaphor.”
91
Processes of reading
and naming illness are what constitute it as such, what bring it out of the individual body, out of
experience, and into the space of the social, of treatment, of visibility. Moreover, illness is a
semiotic process, one of conferring signification by comparison. I have taken this rather lengthy
detour to demonstrate, or begin to demonstrate, that disease disrupts the flow of time by
disrupting the flow of meaning, and vice versa. When a disease is contagious, this disruption is
experienced doubly: as a destabilizing of identity and of relation, a revelation of the
interior/exterior fold, of a being outside of the body, action without subject. When the contagious
phenomenon is depicted cinematically, then, it necessarily leads, to return to Wollen, to an
interrogation of its own code.
*
Before any suspect—cinematic, microbial, or otherwise—can be interrogated, it must
first, of course, be found. Carol and Mamiya are not quite on the lam, but they are still strangely

89
Barthes, 205.
90
Wollen notes that the cinematic sign also has a triple function: “the aesthetic richness of the
cinema springs from the fact that it comprises all three dimensions of the sign: indexical, iconic
and symbolic.” (141)
91
Paula Treichler, How to Have Theory in an Epidemic: Cultural Chronicles of Aids (Duke
University Press, 1999), 15.
82
hard to pin down. Haynes plays with this a great deal on the level of the image, dwarfing Carol
in her surroundings to the point of creating a veritable Where’s Waldo:

Figure 34. Carol in her home (Safe)
83

Figure 35. Carol in the couch store (Safe)

Figure 36. Carol visits a friend (Safe)
84

Figure 37. Carol in the front garden (Safe)
Carol is almost microbial: like the virus itself, tiny but inextricable from her environment, always
there, but barely. The stillness around her dwarfs her. She is always almost on the verge of
eluding us, and her smallness is indeed what forces us to hunt for her. There is ultimately no
difference, it seems, between this Carol and the one we saw planted squarely in the center of the
image, or the Carol we saw multiplied thrice over in the bathroom mirror. Much like a magnified
image of bacteria, or an X-ray of the body, these images show us Carol but don’t necessarily
make her clearer. They do not fulfill the autopsy’s fantasy of seeing within, of seeing not only
beneath the surface but across time.
Potter writes that “rather than removing obstacles to knowledge, desire, and vision…Safe
continually defers or blocks our view of Carol’s illness by, paradoxically, letting us see
85
everything.”
92
Reid makes a similar argument: he writes that that what makes Safe so uncanny is
not that the image or the narrative is hiding something. It is that it presents us with everything,
and thus thrusts us, as viewers, into a direct confrontation with our presumptions, cinematic and
otherwise, about the relationship of looking to knowing.
93
Of course, our disappointment reveals
to us the ways that visibility is not inherently clarifying; but more significantly, Reid argues, that
very disappointment shows us that our practice of looking is already shaped by a set of desires.
94

In this way the film not only “enacts a very Foucaultian reticence”
95
around the visible, as Reid
writes, but makes manifest Foucault’s argument about the way that the body at the heart of
modern medicine has already, before-the-fact, been summoned into legibility via a very specific
terminology. To look at the ill body is thus always to look for a set of answers to pre-written
questions, and not for the questions the body itself might be asking.
Potter’s description of Safe is also useful here: she writes that “all of Carol’s symptoms
are configured…as physical reaction to social confinement and implied surveillance.”
96
Potter
reads the film, as have many feminist critics, as an indictment of suburbia and of the stifling
constraints of housewifely white femininity. She goes on: “It is as if the restrictive environment
in which she finds herself, and that she increasingly seeks out, is the cause of her malaise…Carol
is unable to maintain the necessary safe boundary between her body and her surroundings.”
97
I
certainly do not disagree that the film is structured around Carol’s fruitless attempts to find the

92
Potter, 135.
93
Reid writes that Safe “repeatedly confronts viewers with the very “thereness” of things and
social relations that shapes White's world, and invites, almost dares us to find our way through
the thicket of their materiality.” (33)
94
Reid continues: “the film eschews the all-knowingness of the populist epistemology of
visibility and articulates…our need to see, to know, and thus our desire to draw boundaries” (34)
95
Reid, 33.
96
Potter, 135.
97
Ibid., 136.
86
right place to be. (Soon after the onset of her symptoms, Carol leaves an aerobics class early.
When her friend asks if she’s okay, Carol vaguely and confusedly replies, “Yeah—I just have to
get somewhere.” This tiny interaction is, in a way, the film’s entire plot.) Moreover, the only
diagnosis that (very loosely) sticks is one of environmental illness—Carol is literally under siege
by her surroundings, which, as we see in the images above, have all kinds of power over her. Her
first coughing attack is in her car, as she weaves through Los Angeles traffic behind a truck
whose exhaust pipe is releasing particularly heavy fumes.

Figure 38. Carol inhales fumes (Safe)
87

Figure 39. The view from Carol's car (Safe)

This image, as Reid argues, is neither coded as omnipotent (clearly taken from the inhuman
vantage point of a distant, powerful camera) nor as subjective (intended to convey the world seen
“through Carol’s eyes,” via whatever clichés of shaky camerawork that might entail). Instead, it
is between the two: the camera hovering just outside Carol, next to her looking out, not totally
sure of what for. We see the truck that is (presumably) making Carol cough, but her coughing is
clearly disproportionate to the situation. Increasingly panicked, Carol veers wildly into an
underground parking lot, finally slowing the car to a halt as she catches her breath. Carol is on
the go—though her errand has already been framed as totally inconsequential and futile: she has
gone to complain about her newly-delivered couch being the wrong color—and her movements
are both disrupted and provoked by her newly uncontrollable body, itself ambiguously
vulnerable to the outside world. The scene is rich with suggestion. The car, classical emblem of
the American suburban fantasy of privacy and autonomy, is unable to fulfill its promise, to
88
remain hermetically sealed from contamination. Carol’s journey from pristine suburbia into the
smoggy urban space of the city turns out to be unsafe as imagine she imagines it to be. Carol,
also, is notably more expressive here than she has been at any point in the narrative thus far,
though of course the content of her expression is itself illegible. As we will soon see in the film
(as in the scene I discussed earlier), it is Carol’s nonverbal, bodily expressions —her coughing,
her convulsing, her hiccups—that really tell us something, or, more specifically, that incur the
telling of something itself. Carol “herself” has nothing to say.
But what I am interested in here is not just Carol’s inability to locate a safe space, or the
film’s ironic look at American upper-middle-class life, or even the ways sickness launches her
towards simultaneous erasure of self and self-expression, so much as the way this transitory
moment allows us to think about the film’s liminal, transitory spaces, its lack of clear forward
movement. Sickness forces Carol (permanently) off course, and dutifully, we follow. Much like
Mamiya’s sudden appearance on the beach, Carol’s sudden symptoms make chains of cause and
effect impossible. Christopher Kilgore describes virality thus: it “moves from organism to
organism; it remains imperceptible, though not undetectable…it occupies an ambivalent
ontological category, the hitherto “excluded middle” between the categories life and nonlife.”
98

Beth Ferri writes that “microbiologists have long debated whether viruses are living or nonliving.
Not exactly micro-organisms, viruses occupy a liminal space between living and nonliving—
more than mere strings of chemical notations, but not quite life—perhaps a kind of borrowed
life.”
99
The debate here is less interesting than the fact that viruses themselves, for those who

98
Christopher Kilgore, “Bad Networks: From Virus to Cancer in Post-Cyberpunk
Narrative,” Journal of Modern Literature 40, no. 2 (2017): 167.
99
Beth A. Ferri, “Metaphors of Contagion and the Autoimmune Body,” Feminist Formations,
Volume 30, Issue 1 (Spring 2018: 7.
89
study them, give rise to the boundary between life and nonlife. In their work on animacy, the
lifely quality that extends beyond so-called “living beings,” Mel Y. Chen writes that viruses
seem living, though they are not, because they “require living cells for their own continued
existence.”
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The virus lives through others, not in them. It lives in between, both in space and
in time. Carol and Mamiya are here one minute, gone the next. They are transported, diminished.
They both experience their condition, in part, as disorientation; but over the course of both films,
we soon come to discover that there is no orientation to be found. And so it follows that when
they find themselves somewhere, it’s never quite clear how they got there, or, more distressingly,
who they are.
I find myself: unsatisfying encounters with the (empty) self
In Raymond Bellour’s “From Hypnosis to Animals,” first published in Le corps du
cinema in 2009, he considers the ways that the “strange reality” engendered by scenes of
hypnosis on screen (rather than “hypnotic images” themselves) oscillates between the literal and
the metaphoric, positioning the spectator between the first and third person. These scenes alert us
to an “influence operating from body to body...that multiplies its most somatic effects many
times over in the human organism.”
101
Bellour goes on to suggest that clairvoyants and
hypnotists, much like animals, “are instructed by their instinct concerning what is able to cure
them” (emphasis mine).
102
For Bellour, the “cure” is a kind of felt, magnetic, and unknown force,
rather than an authoritative or objective prescription. Hypnosis and cure for Bellour, as in both
these films, are more about a transcorporeal, incontrollable exchange of “influence,” then, than

100
Mel Y. Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect (Duke University
Press, 2012), 167.
101
Raymond Bellour, “From Hypnosis to Animals,” trans. Alistair Fox, Cinema Journal 53 no. 3
(Spring 2014), 13.
102
Ibid., 18.
90
the wielding of power over one body by another. (For example, Safe leaves a key question open:
is the flyer about environmental illness that Carol sees—is drawn to, zombie-like, at her gym—
the solution to her mystery, or just another influence that leads her to see her condition in its
terms? That is, is the diagnosis an answer, or does it reveal the mere power of suggestion?)

Figure 40. A flier at Carol's gym (Safe)
On a narrative level, like microbes, Cure and Safe move quietly from body to body, from
moment to moment, inhabiting one and then the other with only the vaguest, most dreamlike of
instincts to guide them.
And it is, of course, key that Mamiya is a hypnotist, someone who can make others act
against—rather, without—their will. Cure opens in a doctor’s office, though this is not
immediately clear. A woman sits in a chair, at a white table, reading aloud from a slim blue
book. Seconds later, a doctor crosses the frame in a white coat. He comes to sit across from her,
hands folded in his lap, observing. She is reading from the opening lines of Perrault’s Bluebeard;
after just a few lines, she tosses the book down. “What is it?” The doctor asks. “Nothing,” she
replies, an embarrassed smile on her face, and then the table begins, of its own accord, to
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tremble, lifting from the floor. Quickly, the doctor takes the book away. A dazed look in her
eyes, the woman begins to speak: “I know how the story ends: in the end,” she says softly,
gazing into the camera, “the daughter kills Bluebeard.”
The doctor writes a few notes down in his book, a surprisingly jaunty piano score begins,
and we cut to a shot of a young man walking briskly down a Tokyo street. In the montage that
follows, we see him walk down a flickering tunnel; a hand, presumably his, pulls a lead pipe
loose from a water main; a man, presumably the same, walks across a dimly lit hotel room in
which a woman sits naked on the bed; he picks up the metal pipe from the corner of the room
and strikes her with it; he showers; blood and water slide down the plastic of the shower curtain;
a police siren flashes; we see the driver of the police car (Detective Takabe), and the letters of
the film’s title slide across the screen.
In many ways, the second half of this opening sequence is deeply generic crime-thriller
stuff: a sudden, contextless, violent murder, the arrival of the world-weary detective on the
scene. But the brief, unsettling scene prior shows us that we are not quite in that world, twice
over: first, because the trembling table tells us that something else, something between the
medical and the supernatural, will linger at the film’s periphery; and second, because the sudden
cut tells us that the film itself is ready to toy with its spectator, ready to jolt us from one place to
another, willing to ask us to string together paltry evidence, stingy with context or explanation.
Eventually, we will learn that the woman in the doctor’s office is Takabe’s wife, who is
mentally ill, and we will learn that the man who committed the first murder in the film was under
Mamiya’s hypnotic influence and had no idea what he was doing as he did it. But what I am
interested in here is the way these opening images show us a kind of empty action: the table that
lifts itself up and shakes, the flow and separation of water and blood, the body in a trance. These
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are bodies that “know how it ends,” that are driven towards something (and Safe famously begins
with a long, figureless tracking shot out of the front window of a car, another visual instance of
doing without being), and that in their fatedness come to occupy a kind of total present, which is
to say, a present that could not be otherwise. The hypnotized body, like the droplet of water and
like the film itself, seems to move along a fixed and unknown track (the suburban road, cloaked
in night) that cannot be disrupted: by the time we apprehend it, it is too late.

Figure 41. The view from Carol's car at night (Safe)

Takabe’s wife returns to the doctor’s office later, during the scene with which I opened this
chapter. As Takabe and Sakuma debate the merits of their hypnotism theory, the film suddenly
cuts to her, walking briskly down a street. Just as quickly, she stops walking, looks nervously
around, changes direction. She is lost. Then, another cut: to the police station where Mamiya last
exercised his hypnotic powers. His lastest victim, a police officer, putters around the office, steps
outside, and then pulls out his gun and, without flinching, shoots his partner. And then just as
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quickly, we are at the doctor’s office again: Takabe’s wife walks in, flustered. “Sorry I’m late,”
she says. “I got lost.” “How did you get here, then?” the doctor asks. She cannot offer a
satisfying answer. Like Mamiya, she has simply arrived.

Figure 42. Takabe's wife at the doctor's office (Cure)

At the end of the scene, the doctor will show her the same copy of Bluebeard with which we
began. She will say she has never seen it before. And so all we can know of her sickness is that it
leads her places unwittingly, that it allows her to intuit the future (I know how it ends) while it
also erases her past. Like a sleepwalker, she moves through the world with great intention but
without any agency. Sleepwalking, like spill, is a kind of movement without life, a body without
subject. And sleepwalking will prove to be one of Carol White’s early symptoms, too.
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Figure 43. Carol sleepwalks in her backyard (Safe)
*
We are taught not to wake sleepwalkers, lest the psychic shock of their sudden displacement
prove too much, the cinema’s sharp cut made real, the locus of meaning permanently severed;
instead, we are told to guide them back to sleep, to join them in their trance, and to contain them
somehow, lift the blankets, shut the door. The sleepwalker is not just in literal danger, unaware
of her real surroundings: she is at risk of a deeper splintering of self. In Cure, once Mamiya has
been formally arrested, the police, led by Takabe, start to show Mamiya photographs of his
victims; he claims not to recognize them. Takabe then shows Mamiya a polaroid of himself; his
reaction is equally blank, and only upon holding the photograph up to his own reflection in the
mirror does he admit a resemblance.
95

Figure 44. Takabe in the interrogation room (Cure)

Figure 45. A polaroid of Takabe (Cure)
96

Figure 46. Takabe considers his own image (Cure)

Mamiya is framed and reframed here, both in a criminal and a visual sense: he recognizes his
own image, but, he says, he “does not know” the man in the picture, though, he admits, “it looks
like me.” He is being interrogated, not medically assessed, but there is a kind of diagnosis at
play: he is being reminded of his body, his body made strange through imaging and discourse: he
is being told both who and what he is (and this will happen again, as in the scene I described
earlier). Rather than producing knowledge or coherence, this produces an endlessly fractured and
duplicable subject (like Carol in her mirror-paneled bedroom). The hermetically sealed space of
the interrogation room, the window, the Polaroid—he is unable to correctly fill these clinical,
documentary, foreclosed spaces, and they cannot quite contain him, either. In Mamiya we have a
character who, like spreading water, resists form, bends and shapes to its container—like disease:
resisting linearity, cause or effect.
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And in the moment of touching his own image, much like Carol touching her face in the baby
shower bathroom, he comes not into a closer knowledge of himself but instead, to use Karen
Barad’s terms, into “an encounter with the infinite alterity of the self.”
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For Barad, touch, more
than any other sense, incurs a deeply embodied sense of cause and effect; it opens us up to the
other, including, importantly, the other within. Hence Shildrick’s invocation of the gaze as a
necessary gap that keeps us from being affected. Shildrick writes that because we live in “a
specular economy that privileges separation,” touch is “the very thing that signals potential
danger.”
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Too much touch or the wrong kind, as Ngai writes, can chafe, irritate, contaminate;
but not enough leaves us undernourished, unable to properly emote, to care for others.
As I come to a close, I want to suggest that Mamiya’s misrecognition of himself is what
brings us back to disability studies’ insistence that we are not so neatly and discretely bodied as
we might want to believe. Following Grosz’s reading of Lacan, Shildrick reminds us that “the
closure and distinction of normative embodiment pivots on a (mis)recognition, which, whilst
apparently inaugurating wholeness, in fact relies on a splitting at the heart of subjectivity.”
105

Shildrick notes that in psychoanalytic theory, the subject’s entry into the symbolic is necessarily
incomplete, because there is always a “before” that remains. She turns to Lyotard, who describes
the pre-linguistic self through the notion of the “first touch”:
“It is, in short, the corporeal ambiguity of touch that disrupts the distinction between self
and other, that institutes and perpetuates an indifference [emphasis mine] that is deeply
alien to the notion of a disembodied subject. That ambiguity figures an uncanny such that
it is not simply that monsters are always there in our conscious appraisal of the external
world; they are the other within.”
106

103
Karen Barad, “On Touching—The Inhuman That Therefore I Am,” differences, vol. 25, no. 3
(2012): 214.
104
Shildrick, 104.
105
Ibid., 106.
106
Ibid., 107.
98

I am especially compelled here by Shildrick’s use of the term “indifference” to signify a kind of
non-differentiation: indifference here meaning that touch, which both precedes us (in the
maternal bond that exists, in the Lacanian schema, before the subject’s arrival to consciousness)
and also requires or instantiates a particular kind of now (to be touching is to be conterminously
present), conjoins subjects, and in so doing transcends the necessary distance between self and
other (even when that other is the self itself!) in a way that threatens to pull back the lid on the
repression at the root of the “unified subject” (i.e. the subject seen in the mirror). As I have
considered via Baudry since the start of this chapter, the tenuously unified viewing subject is
always held in tension with the held-togetherness of the film image. And this is a Deleuzian
auto-affection, too: a fold, an indifference between interior and exterior.
Yet indifference in its more common usage would suggest not caring—which brings us all
the way back to feeling. Emotionally speaking, indifference is hard to describe—a kind of flat
affect, a sense of being unperturbed, or more precisely, unperturbable. To be indifferent is to be
un-affected, to be untouched. Indifference is an oft-cited quality of the viral itself: the virus does
not care in whose body it resides. And it is, after all, indifference that most strongly unites
Mamiya and Carol as characters—indifference or, at least, a seeming indifference that makes
them inscrutable, passive, difficult to know. Mamiya agrees that the man in the photograph looks
like him, he gladly accepts the photograph he has been handed, but it doesn’t really matter to him
one way or another.
At the end of Cure, following a final confrontation in which Takabe shoots Mamiya, we find
ourselves in a restaurant. For a moment it is not clear if we will be oriented at all—if there is a
familiar face to be found amid the diners. But then we see Takabe, eating alone, who has just
99
ordered his meal. Something is amiss. He calls a waitress over to his table; he lights a cigarette,
opens his newspaper. The camera begins to follow the waitress, who walks back to her station,
performing her duties—and then, suddenly, her walking takes on just a hint of the sleepwalker’s
deadened intention, and she picks up a big knife and starts to walk towards someone. Then, just
as quickly, the credits begin. Cure’s unnerving ending suggests that Takabe has, in a way,
become Mamiya. How? Mamiya, the film has just spent all its time showing us, is nobody, is
nobody himself. But he is also, diegetically speaking, dead—shot dead, his vital organs no longer
at work, his body limply rotting, we can imagine, on the damp and cold floor of the warehouse
where he and Takabe finally faced one another. And so in fact, discursively speaking, it makes
perfect sense that he should continue to be, because in being nothing, he cannot be eliminated;
like Aristophanes’ hiccup, Mamiya represents the absence upon which presence rests, upon
which the film itself makes its meaning. He can be, as he is here, encountered without being
present in the image, just as he could be present in the image without being meaningfully
encountered.
Safe’s famous ending also involves an unsatisfying visual encounter with the self. In her pod
at Wrenwood, Carol walks over to the tiny mirror and stares at herself. Her face is pale, the
outline of her mouth chalky, her hair matted and dull in its low ponytail. She has become one
with the room itself, which is white like her outfit, and evokes the strange blend of the sterile and
the infested that is so particular to medical space. This scene runs parallel to the earlier encounter
with herself in the mirror at the baby shower where her symptoms first became fully visible—in
the form of long, rattling hiccups. In that scene, she tucked herself into the bathroom as a refuge
from the concerned, probing, disgusted gazes of the other women, and stared, mouth dully open,
at herself—her hair permed, her body sheathed in pink brocade, an absurd, cartoonish armor of
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girlishness beneath which her endlessly-aging and newly fragile body shuddered and strained.
But now she is here, ostensibly out of harm’s way, with nowhere to go and nobody to see. She
touches her own face, again. Her jaw set, she looks hard at herself and whispers: I love you. The
film is not, certainly, suggesting to us that Carol has gone on an empowering journey of self-
love. I refuse to accept also that Haynes is asking us to believe that this desiccated version of
Carol is somehow more authentic than the one we met at the film’s start, even if that Carol was
hardly anyone at all either.

Figure 47. Carol rises from the bed in her cell (Safe)
101

Figure 48. Carol gazes out at us (Safe)

What, then, do we make of this? Like a virus, Carol can be suppressed, contained even, but
she will not die: she will duplicate, endlessly, she will remain mostly out of sight. Her utterances
will be at once legible and sort of meaningless. She is both the subject–the I–and the object–the
you–and the film’s final image positions us either as the mirror or as Carol herself.
Reid describes Carol’s journey as one of her body’s “becoming other…to herself and to her
family and friends.”
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That is, what happens is neither the simple loss of her healthy status nor
the arrival of some danger, but instead, an irrevocable change that yields the paradox of
“becoming other.” For Carol to be newly other requires her to still be Carol, but somehow not to
be, at the same time. This is true for everyone, but it is only in sickness that we stare straight in
the face of our body’s disjointed temporality, its elusiveness. Reid suggests that the film

107
Reid, 37.
102
“approaches the affect of becoming other” formally, through its various distancing mechanisms,
distances, to return again to Shildrick, that both compel us to look and keep us away.
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I return
here to Deleuze’s cinemas of the body, which I invoked at greater length in my introduction:
Alanna Thain, echoing Shildrick, argues that when Deleuze writes of “giving a body,” what he
means is the giving of “a capacity to affect and to be affected…the incorporeal dimension of the
body is its felt becoming, [and so] the indetermination of a cinematic body restores an
ambiguous status to matter itself.”
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For Thain, in moments of suspense, we become aware of
the body’s “becoming (an)other…[experiencing] neither displacement nor alienation, but an
infidelity to the self.”
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Thain suggests that when a narrative’s central transgression is the
passage of time, as it necessarily is in illness, the image becomes unreliable: it demands seeing
double, seeing twice. Cure and Safe reveal that for the viral, contaminating body, no image, no
number of images, will ever truly satisfy. The alienness of the body is inalienable.
Sickness makes the body’s form—its parts, its mechanisms—into its content, forces us to
reckon with our unknown insides. How is it possible that texts about contagion might invoke
their own rupture, might invoke formlessness or emptiness? In Cure and Safe, the mechanisms of
contagion are uncannily close to those of the cinematic image, the mirror image, the photograph,
blurring past, present and future, made legible only in and through the body, vision, contact.
These films hold us at a perpetual distance, breathlessly imploring us—like the taunting, elusive
Mamiya himself, like Carol in her room—to come just a little closer.

108
Reid, 39.
109
Thain, 39.
110
Ibid., 12.
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Chapter 2
Bodies in water: disability cinemas and creatures of the sea

Mixtures are in bodies, and in the depths of bodies: a body penetrates another, and coexists with
it in all of its parts, like a drop of wine in the ocean.

-Gilles Deleuze, The Logic of Sense
111

The addition of a drop of blue dye to a glass of water results not in blue dye plus water, but in
blue water: a new reality.

-Paul Levinson, The Skin of Culture
112

All water has a perfect memory and is forever trying to get back to where it was.

-Toni Morrison, “The Site of Memory”
113

I find a surprising transition from my last chapter to this one: the folktale of Bluebeard.
114

Bluebeard is a horrible, murderous man who kills his wives, and keeps their corpses in a
forbidden chamber in his castle—it is not totally clear why, though one theory suggests that
Bluebeard himself is a leper, hoping to cleanse himself of his own monstrosity (visible via his
blue beard) in the blood of others—until one soon-to-be victim finds him out sooner than
expected. Depending on the version of the folktale, the woman who finally escapes him either
finds a key, stained with blood that will not wash off, or a chopped-off finger, still gruesomely

111
Gilles Deleuze, The Logic of Sense, trans. Mark Lester (New York: Columbia UP, 1990), 6.
112
Paul Levinson cited in Derrick de Kerckhove’s The Skin of Culture: Investigating the New
Electronic Reality (London: Kogan Page, 1997), 35.
113
Toni Morrison, “The Site of Memory,” in Inventing the Truth: The Art and Craft of Memoir,
ed. William Zinsser (Boston: Houghton Mifflin, 1995), 99.
114
The best-known version of this is Charles Perrault’s 1697 version, but references to the tale
abound. For this chapter’s purposes, I draw in part on the work of Bruno Bettelheim in The Uses
of Enchantment: The Meaning and Importance of Fairy Tales (Thames & Hudson, 1976).
104
bearing a ring—evidence that will quickly unravel her murderous husband’s well-oiled scheme.
Either way, there is a moment at which the trace, the stain, the left-behind, cannot be contained:
when the unguent materiality of the body comes into contact with something hard, something
made, it provides a kind of liberatory evidence.
Bluebeard, as I mentioned in my first chapter, is part of Cure’s opening scene: it is the
book Takabe’s wife is reading at the psychiatrist’s office. She says, eyes unfocused, as her doctor
gazes smilingly upon her: “I know how the story ends.” That is, she, a character who we will
soon learn suffers from, among other things, amnesia—itself indeed a kind of perpetual jumping-
ahead-to-the-end, an experience of effect whose causes are lost—already knows about the grisly
realities that lie ahead. Later, she will look at the same book and claim never to have seen it
before.
And in Jane Campion’s 1991 film, The Piano, a performance of the Bluebeard tale by a
group of children becomes the unsettling mise-en-abyme that also serves a premonitory function:
specifically, the chopping off of the wife’s finger by the axe, which is precisely what will happen
to the film’s mute protagonist, Ada, herself. The disabling act of violence is explicitly framed in
the film as a patriarchal attempt to punish her for the sexual pleasure she has sought outside of
her marriage, which has since the film’s start been inseparable from her deep attachment to her
piano. Ada, who is voluntarily mute, nevertheless “makes noise” within the diegesis through her
piano. In literally cutting off her access to the piano, her frustrated husband wants two things at
once: to silence her and to force her, in pain, to speak.
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So: why Bluebeard? The story is frequently invoked as a parable about the danger and
potency of feminine curiosity, about the way cruelty replicates itself.
115
Campion’s work has a
clearer feminist agenda than Cure; I am not convinced that either of the films makes a
particularly radical statement, here or otherwise, about marriage or its inherent violence. It is true
that both films feature forms of violence that need to be unearthed, brought out into the open,
and it is also, always, too late. But what I think interests me is the way that the Bluebeard tale
speaks to a particular (and harmful) fantasy of containment, of an impermeable boundary (the
locked door, the hidden chamber), a tucking-away of the monstrous that the feminized body
might be capable of undermining.
***
About halfway through Jacques Audiard’s Rust and Bone (France, 2012), one of the
film’s protagonists, Stephanie, returns to Marineland, the aquarium where she once worked as an
orca whale trainer. She has not been back inside the park since an accident during a performance
that led to the amputation of both her legs from the knee down. Stephanie makes her way down
the stadium bleachers using her newly-acquired prosthetics; she comes to stand before a vast
tank, where she pounds her fist to the glass. Soon, an orca whale emerges from the deep blue.
Slowly, Stephanie begins to communicate with the whale, using a set of hand signals
familiar to them both. She nods, and the whale nods back; she leans her body in one direction,
then another, and the whale moves according to her hand, exhaling gentle streams of bubbles
through its nose. As the scene progresses, we cut ever closer to the glass, until the aquarium’s
surface fills the whole of the frame. Stephanie and the whale are mere centimeters apart,

115
See: Diane Long Hoeveler, “Silence, sex, and feminism: An examination of The Piano's
unacknowledged sources,” Literature/Film Quarterly, vol. 26, no. 2 (1998).

106
separated by a pane of glass that cuts between their mutually exclusive worlds: she cannot live
long in its space, nor can it safely remain in hers.

Figure 49. Stephanie faces the orca (Rust and Bone, Jacques Audiard, 2012)
107

Figure 50. Stephanie gestures to the orca (Rust and Bone)

This scene marks a turning point in the film. Stephanie has just begun a sexual
relationship with Ali, a down-on-his-luck single father whom she met at a nightclub shortly
before her accident. Now, as she stands before the whale, we are meant to believe that Stephanie
is beginning to come to terms with her new identity as disabled, to recover from her trauma, and
to reenter the social (and sexual) world. In reestablishing a shared language with the animal, in
this moment of mutual recognition, the film suggests, the disabled woman heals and finds
herself.
Guillermo del Toro’s fantasy film The Shape of Water (2017, USA) contains a strikingly
similar scene of woman-sea creature encounter. The film tells the story of a mute woman, named
Elisa, who falls in love with a fish-man hybrid creature (described in the film’s credits, and
henceforth here, as “the amphibian man”) being held in the Cold War-era government laboratory
where she works as a cleaner. Elisa and her coworker Zelda are summoned to the room where
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the creature is being kept, to clean up after a gruesome accident. Their boss, who is violently and
cruelly attempting to tame the creature (for reasons that are never made fully clear), has lost two
fingers, presumably at the creature’s hand. Blood, mixed with water from the tanks, spills
beneath the heavy surface of the bolted metal door. Elisa, mop at the ready, pours a bucket of
water onto the floor, which sends the blood splashing outwards and reveals the two cut-off
fingers; she places them gingerly into a paper bag.

Figure 51. Blood on the floor of the government facility (The Shape of Water, Guillermo del
Toro, 2017)

Suddenly, she hears a wailing sound, and warily approaches the amphibian man’s tank,
placing her hand lightly on the surface: his silhouette appears and he floats towards the glass,
echoing the orca whale’s slow emergence into visibility. The two gaze, in mutual awe, at one
another, shot from slightly below like the stars of a golden-era romance. They are quickly
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interrupted by the opening of a door, and the amphibian man hurtles backwards into an unknown
beyond.

Figure 52. Elisa meets the amphibian man (The Shape of Water)

This fish tank, unlike the Marineland aquarium, is shaped like a tall cylinder. It allows the
amphibian man to appear in an upright position, emphasizing his bipedalism and immediately
approximating his form to that of a normative human body. Notably, the outward curvature of
the glass also works to establish him (and stereotypically gender him) as a desiring and active
(and virile, masculine) subject, already on the verge of bursting out of what constrains him. If
Stephanie’s encounter with the orca evokes, mirror-like, an encounter with the self, Elisa’s is a
more erotically charged shock: a disruption, an intrusion, a fleeting thrill.
These two films, along with The Piano, each traffic in the familiar (and ableist) trope of
the traumatized, disabled woman who is rehabilitated, or who “finds her place,” through a
110
heterosexual romance.
116
These three are not, however, merely films about disabled women, of
which there are many; they are two remarkable examples within a wider network of
contemporary films
117
that portray disability alongside a sustained engagement with motifs of
water and/or underwater animals. What is it about the particular qualities of the ocean and its
ecologies that holds a special appeal, both formally and narratively, for the representation of
bodily difference in the cinema?
***
Campion’s celebrated 1993 film, about a mute woman who is brought to New Zealand in
the mid-19
th
century to marry a gruff, abusive man she has never met, and who goes on to an
affair with another man on the island, has also received a great deal of criticism—perhaps most
of all for its deployment of Maori characters in deeply stereotypical ways (as, to put it very
simply, avatars for all that is natural and wild) but also for the ways its resolution appears
surprisingly conservative (Ada finds her domestic bliss, her picket fence, simply with the other
man). And it must be said that Ada’s muteness is explicitly framed within the narrative as
voluntary, as a trauma response,
118
and is repeatedly undermined by her voiceover throughout
the film. Is she, then, disabled? Can we comfortably say this? I would argue that the case of
Campion’s Ada allows us to more fully see the way disability is not so easily defined: that it is
contingent, contextual. If we continue to follow the line of social-model thinking, we can see

116
Martin Norden catalogues this particular trope at length in The Cinema of Isolation: A History
of Physical Disability in the Movies (New Brunswick: Rutgers UP, 1994), to which I also
referred in my introduction.
117
See also: Breaking the Waves (von Trier, 1996), The Diving Bell and the Butterfly (Schnabel,
2007), The Sea Inside (Amenábar, 2004), among others.
118
In the film, her daughter, Flora, explains that her mother’s muteness is the result of a horrible
(and also watery) accident: Ada and her then-husband were singing together in a rainstorm, and
lightning struck, killing Ada’s husband instantly. “At the same moment my father was struck
dead,” Flora says, “my mother was struck dumb.”
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how Ada’s muteness might be understood as a disability, but not an impairment: an impediment
in a world that expects her to speak, even if it is not somehow inherent to her body. But perhaps,
as I will explore further in my next chapter, we can also see her muteness as a particular form of
self-expression, as a resistant identity that brings her into greater communion with other ways of
being.
The water in The Piano serves several important functions. The film opens with the
arrival of Ada and her daughter, Flora, in New Zealand on a small boat, their belongings (and the
eponymous piano) in large trunks, being handled by a group of men. It is the sea, here and
throughout the film, cuts Ada off from the rest of the world but which also presents her with the
perpetual horizon of possible escape and death. Mother and daughter are in this instant “born” at
the same time (which of course they always are, mother only becoming-mother at the moment of
the child’s birth)—but theirs is not an easy or joyous baptism. It is instead a tumultuous and
unsteady journey in which a great deal is already lost. The ocean’s steady roar is framed as a
kind of parallel to Ada’s insistent silence. Water, as I discussed in my previous chapter, absorbs
itself into what it touches: but it also, itself, absorbs, sound, things, and people, quieting
everything. Water is present across the swampy, dense landscape that men like Ada’s husband
are so desperate to tame, to turn into solid ground. It makes the earth pliable—open to
inscription—at the same time as it carries only a promise of impermanence, of erasure. The
tentacular animal Flora draws on the beach—to hint at what is to come in this chapter—will not
stay.
112

Figure 53. Shapes in the sand (The Piano, Jane Campion, 1993)

At the film’s end, Ada wears a prosthetic on her hand to play the piano, but the original
piano lies at the bottom of the ocean, silent forever. I will focus my attention on The Shape of
Water and Rust and Bone in this chapter, but I began with a brief turn to The Piano because it,
too, allows water to stand in for the unspoken, the unspeakable, the visible but unseen; for that
which is somehow alive and threatens life. In many ways all of these films participate in a
retrograde politics around disability, entrenching its status as painful difference to be smoothed
over. But something laps at their edges.
*
In the early 1990s, disability studies in the humanities saw something of an efflorescence; in
the academy,
119
disability was newly in dialogue with feminism, with Marxism, with art history.

119
I mention this in part because disability studies, as a discipline, is deeply indebted to a great
deal of activism that takes place far outside of academia, and it is in those activist spaces that
many, though not all, key concepts in disability studies have first taken root; there are also some
113
In The Rejected Body: Feminist Philosophical Reflections on Disability (1996), Susan Wendell
drew parallels between emergent lines of thinking of queer theory and disability studies. In her
view, “the social response to and treatment of biological difference constructs disability [and
gender] from biological reality.”
120
While I, and many others, would challenge her belief in a
knowable or stable “biological reality,” the recourse to “the biological” as a way of both
producing and legitimizing these binary oppositions—abled/disabled, man/woman, life/nonlife—
persists. Yet the fundamental instability and impossibility of these categories, and their
inadequacy in accounting for the diverse realities of human experience, means they require
constant policing, and that they exist primarily in the imagination: “the disciplines of normality,
like those of femininity,” Wendell notes, “are not only enforced by others but internalized.”
121
In
part, the films I explore in this chapter are thematically oriented around the enforcement,
internalization, and embodiment of norms for women. The Piano is about a woman who cannot
fulfill her supposed obligations as a wife and mother; Rust and Bone’s Stephanie must learn how
to live in, and with, her newly amputated body and the shift in social and sexual status that
accompanies it; The Shape of Water’s Elisa, who is from the film’s start familiar with her
“othered” body, must grapple with the consequences of her transgressive, bestial desire, a desire,
the film tells us, that arises from her disability.
In Rust and Bone as in The Shape of Water, disability functions primarily as a marker of
difference, of outsideness; this, too, falls neatly in line with a number of narrative clichés that

key points of divergence between academic disability studies and activist organizing online and
elsewhere. Within the academy, Robert McRuer and Alison Kafer have written extensively on
this subject.
120
Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New
York: Routledge, 1996), 42.
121
Ibid., 88.
114
have been identified and catalogued at great length (see Longmore 2003, Norden 1994, Chivers
and Markotic 2010, among others). It is also worth noting that these films participate in a lineage
of ableist production practices: they feature able-bodied actresses (Marion Cotillard and Sally
Hawkins, respectively) in the roles of disabled characters, and The Shape of Water, despite its
emphasis on American Sign Language and the challenges of communicating nonverbally in a
world that prioritizes sound, was not broadcast in theatres in an accessible way for the hearing
impaired. In many ways, the two films do little to disrupt a long history of disability narratives
that depict disability as tragic, grotesque, pitiable, and—not in spite of, but for those reasons—
attractive. It is, of course, worth remembering that one film involves a much more taboo
relationship—between disabled woman and animal—and the other merely uses human-animal
relationships as both a narrative and metaphoric device.
My reading of these two films is, in some ways, a straightforward reading of their aquatic
and ecological metaphors; but, as Alison Kafer reminds us in her vital Feminist, Queer, Crip,
“our metaphors, our tropes, our analogies: all have histories, all have consequences...part
of the work of the critic is to explore the effects texts and images have on people’s lives.
The blurring of boundaries, the permeability of bodies, the porousness of skin––all take
on different meanings depending on whether they are viewed through the prism of
institutionalization or as part of a strategy of feminist analysis.”
122

A disability approach demands that, among other things, we leave no metaphor unexamined, take
no abstract invocation of “the body” for granted. Across this chapter, my insistence on taking

122
Alison Kafer, Feminist, Queer, Crip (Indiana University Press, 2013), 128. This is articulated
in her work as a way of emphasizing the relevance of theory to activism; it is also, I would argue,
an extension of disability scholarship’s investment in the ways media—and here I think of
metaphor both in media and also as media, as a way of transforming a concept by connecting it
to something else—directly and tangibly affect our thinking and our lives.
115
literally the metaphors present in both the theory and the films I engage arises from this kind of
praxis.
From the start, disability theory has been in conversation with, and often indebted to,
feminist scholarship, particularly in its insistence on complicating the notion of (and
weaponization of) the biological. In his work on the social model of disability, Tom Shakespeare
notes that its early proponents made analogies to distinctions between sex and gender (which
have, I should note, been challenged and complicated by many scholars of queer theory, but
which are nevertheless briefly useful here): “like gender,” he writes, “disability [needed to be
redefined as] a culturally and historically specific phenomenon, not a universal and unchanging
essence.”
123
Broad though this assertion may be, it is useful in allowing us to see some of the
connections between gender and disability as categories of identity, especially when it pertains to
the ways both are relational, formed and sustained within environments, and in a constant
process of becoming. Feminist scholars have made key amendments to this social model,
124

emphasizing the importance of embodiment, emotion, and personal experience without
disregarding the structural contingencies of disability.
I turn now to the specific evocations of aquatic space and marine life in The Shape of Water
and Rust and Bone, alongside their representations of disability. Although only one goes so far as
to suggest that a nonhuman animal is an appropriate sexual partner for its disabled protagonist,
both films participate in a longstanding and harmful tradition in which disability, in

123
Shakespeare, 198.
124
See: Barbara Fawcett, Feminist Perspectives on Disability (Routledge, 2000); Nick Watson,
Linda McKie, Bill Hughes, Debra Hopkins, and Sue Gregory, “(Inter)Dependence, Needs and
Care: The Potential for Disability and Feminist Theorists to Develop an Emancipatory
Model.” Sociology (Oxford) 38, no. 2 (2004): 331–350; Susan Wendell, The Rejected Body:
Feminist Philosophical Reflections on Disability (Routledge, 1996).
116
representational art, serves as a quick and easy way to signify Otherness, aberration, deficiency.
In this tradition, the presence of the disabled Other produces a sense of bodily stability, in the
normatively abled characters who populate the narrative as well as in the abled spectator who
looks on from a place of presumed superiority.
125
What interests me most, however, and what I
claim here is most interesting about the films themselves, is the way they deploy ecological
metaphors, and more specifically those of the sea and sea creatures, as a way of evading the
challenges that disabled women pose to the cinematic gaze. Are cinematic fantasies about
gender, disability and animality always, on some level, fantasies about their containment? What
crises of meaning, form, and visuality are engendered by disability and animality, and how do
those play out in the immaterial, bounded, and endlessly expansive space of the film screen?

Creatures of the deep
Sally Chivers and Nicole Markotic have written extensively about the relationship between
disability and cinema: on screen and off, disabled bodies, they write, “both materialize and
symbolize moments of interaction between the social and the physical.”
126
One of disability
theory’s key interventions is to insist on this inextricability of discourse from embodiment.
Disability theorists, and in particular feminist and ecocritical disability theorists, have developed
concepts of disability as a material-semiotic practice; that is, disability as a particularly acute
iteration of the (always) open-ended dialogue between flesh and world, between the physical

125
Sharon Snyder and David Mitchell, in Narrative Prosthesis: Disability and the Dependencies
of Discourse (University of Michigan Press, 2000), write: “The deficient body, by virtue of its
insufficiency, serves as baseline for the articulation of the normal body” (7).
126
Chivers and Markotic, 11.
117
body’s always-elusive presence and the semiotic structures that make embodiment legible.
127
A
feminist disability approach can offer us ways of understanding our embeddedness in the world,
our presences on the screen, and the ways our collective and individual desires—whether for
connection or disconnection, for mixture or separation—are always part of a broader set of
negotiations around our bodily limits. Disability approaches refuse to distinguish between the
literal and the figurative, between object and representation, in a way that brings us to some of
film theory’s most foundational questions, questions about realism, presence and identification—
about the cinematic image’s unique relationship to “life” and the living.
The connections between disability and animality are myriad and complex. Sunaura
Taylor, in her work on disability and animal rights, has put it quite frankly: if, for example, “an
ape who stands upright…[is] seen as more human, what happens to humans who do not or
cannot stand upright?”
128
Disability, socially construed as a lesser form of life, is negatively
entwined with animality; the disabled person is called upon in various ways to “prove” her
humanness, to approach its impossible limit. Historically, constructions of animality and
disability have had a long and painful relationship to one another, and perhaps nowhere is this
connection more explicit than in the realm of the visual. Situated, much of the time, in the space
of metaphor and the fantastical, in both an elusive, evolutionary past and an imagined future (one
in which both are, often, eradicated or extinct), and regularly called upon to represent otherness,
disabled and animal bodies throw key tenets of both Enlightenment and modernist thought into
question. They complicate the distinction between the universal and the individual; the relation

127
Joshua Kupetz, “Disability Ecology and the Rematerialization of Literary Disability Studies,”
in David Mitchell and Sharon Snyder, eds., The Matter of Disability: Materiality, Biopolitics,
Crip Affect (University of Michigan Press, 2019), 54.
128
Sunaura Taylor, Beasts of Burden: Animal and Disability Liberation (The New Press, 2017),
87.
118
of lived experience to the body’s status as visible object; the notion of bodily wholeness and
autonomy; the existence of the “natural” body or the “natural” world; and the contours of the
human itself.
And to close this triangulation—disability, cinema, animal—what of the relationship
between animals and looking? In “Why Look at Animals?” John Berger writes of the
disappointment commonly experienced at the zoo: “What do you expect? [The animal is] not a
dead object you have come to look at, it’s alive. It’s leading its own life. Why should this
coincide with being properly visible?”
129
At the same time, he notes, this isn’t the whole of it:
“however you look at these animals...you are looking at something that has been rendered
absolutely marginal.”
130
That marginality, Berger goes on to say, is directly related to their
confinement in the space. I would like to linger on this for a moment: first, with Berger’s
important suggestion that “leading one’s own life” is on some level antithetical to “being
properly visible”; and second, his assertion that confinement is intrinsically marginalizing, which
seems straightforward enough, but becomes more complicated when it comes to the screen and
its confines, the neither-alive-nor-deadness of both the filmed image and its subjects. For the
history of disability imagery in mainstream cinema is also one of confinement and
marginalization: perpetually relegated to the realm of the metaphoric, the disabled cinematic
subject is overburdened with signification,
131
ever-present but ultimately unseen, visible but not
properly so.

129
John Berger, “Why Look at Animals?” in About Looking (London: Writers and Readers,
1980), 24.
130
Berger, 24.
131
For more on the relationship between disability and signification, see Sharon Snyder and
David Mitchell’s Narrative Prosthesis: Disability and the Dependencies of Discourse
(University of Michigan Press, 2006).
119
Berger describes animal looking thus: when the (human) subject “is being seen by the
animal, he [sic] is being seen as his surroundings are seen by him.”
132
In sum, for Berger, when
we try to “see” animals, we become acutely aware of what we are missing, and when animals
look at us, we are, however briefly, confronted with a gaze that we recognize as a gaze but which
does not necessarily recognize us as human. Much like Narcissus,
133
we are brought back,
frustrated, to the act of our own looking. But in the case of the animal gaze, we are undone.
In The Shape of Water, soon after their first meeting, Elisa begins to covertly visit the
amphibian man in the laboratory, bringing him food, playing him records, and teaching him Sign
language. Soon, she is in love, despite (or because of) the fact that their relationship seems to
collapse two forms of connection: human-to-pet and sexual partnership. Mel Y. Chen has noted
that in many cultural narratives, “animal-human boundaries are articulated in terms of sex and
gender…[via] perhaps the most consistent missing morphology in cultural representations of
animals: the genitalia.”
134
No genitals are immediately visible on the amphibian man, though the
characters all gender him masculine immediately; when Elisa finally confesses her liaison to her
coworker Zelda, curiously, the first question Zelda asks is: “does he have a…thing?” Elisa,
noddingly, reveals his genitals through a series of interesting signs:

132
Berger, 5.
133
In recent work, Akira Mizuta Lippit has suggested that, much as Narcissus’ reflection is what
constitutes him as a subject, “cinema exposes the originary disunity of the body...which the film
phantom reverses.” See: Akira Mizuta Lippit, Cinema Without Reflection: Jacques Derrida’s
Echopoiesis and Narcissism Adrift (University of Minnesota Press, 2016), 44.
134
Animacies, 128
120

Figure 54. Elisa signs (The Shape of Water)

Figure 55. Zelda reacts to Elisa's signing (The Shape of Water)
121
First, a shape that evokes the vaginal canal; from it, a phallus emerges, and in emerging reveals
itself as always otherwise hidden. This moment is glossed-over in the narrative, but the
amphibian man’s double-hybridity here—he is both fish and man, but perhaps also both man and
woman—is important: his status as mutant makes him neither deficient nor excessive: it makes
him capable of blending, of being both at once.
The film itself does not always follow this radical line of thinking. Elisa begins to
equivocate his non-normative body with her own, telling (in Sign) her best friend, who is
skeptical of her affections: “I move my mouth like him. I make no sound like him…[and] when
he looks at me…he does not know what I lack.” She, and the film, remain firmly within the
ableist and misogynist paradigm that sees her as lacking, as needing to be filled in order to be
fulfilled. According to the film’s logic, it is the amphibian man’s vulnerability, his own and very
different (i.e. nonhuman) muteness, the opacity of his desires in conjunction with his malleability
and his apparent innocence, that makes him a viable sexual partner for Elisa. Like Berger’s zoo
animal, the amphibian man does not see her difference, and in so doing, grants her access to a
humanity, a wholeness, and a desirability that the social world does not.
To return to Stephanie’s moment of re-encounter with the orca in Rust and Bone: the loss
from which she is healing in this moment is not the loss of her legs but her loss of trust in this
human-animal relationship, which is, most of all, a trust in the security of enclosures, in forms of
containment: the aquarium’s glass pane, but also the enclosures of her own body, the hierarchies
that place abled life above disabled life above animal life, boundaries which have all been
revealed to be tenuous, unstable, fragile. The central narrative problem for Stephanie is not
actually one of maintaining her autonomy; on the contrary, it is of learning how to encounter the
world, learning how to love. The film’s primary narrative concern is with her emergence from
122
isolation and her growing bond with Ali. But it is only through a certain maintenance of
difference, the fantasy of separation and limits, that the fantasy of boundary-crossing, of relating
across difference, is made possible.
*
Berger reminds us that “animals are always the observed…what we know about them is
an index of our power, and thus an index of what separates us from them.”
135
Animals serve as
the conceptual limit at which we often draw the contour of the human (a contour also drawn and
redrawn at the thresholds of “ability”), but they are never so neatly cast aside as we might wish:
they escape us always, threaten at every moment to undermine our sense of centrality, and, more
significantly, our sense of superiority. I offer here a brief example from outside of these films:
double-amputee Paralympian Aimee Mullins, in Matthew Barney’s The Cremaster Cycle (1994-
2002), is depicted with a number of non-anthropomorphic prostheses: these include legs that end
in tentacles and the furry legs of a cheetah. In her TED talk, described by Luna Dolezal in recent
work on disability and malleability, Mullins “cites animals and superheroes as inspiration to
create ‘super-abled’ bodies which move ‘away from the need to replicate human-ness as the only
aesthetic ideal.’”
136
Mullins’ perspective here refuses the schema that places humans below
superheroes but above animals, and in so doing deftly reveals the contingency and arbitrariness
of “ability” as a rubric or fixed idea. By depicting, variously, nonhuman life as threatening,
healing, necessary and yet never quite graspable, Rust and Bone and The Shape of Water can

135
Berger, 16.
136
Luna Dolezal, “Disability as Malleability: The Prosthetic Metaphor, Merleau-Ponty and the
case of Aimee Mullins,” in Denisa Budnaru, ed., Medial Bodies Between Fiction and Faction:
Reinventing Corporeality (Columbia University Press, 2020), 137.
123
offer, in spite of their many faults, representations—and perhaps even refusals—of the
hierarchies implicit in classifications of forms of life.
Among animals, the sea creature occupies a singularly cinematic realm: suspended
forever behind a flat surface (the endless sea, the aquarium’s glass pane), it is legible to us as
something living—mobile, temporal—and yet its mode of existence bears little resemblance to
our own. Underwater life cannot but be apprehended, first and foremost, as image, an image that
is always—at least a little—reflective.
***
Sea creatures, even more than mammals, also put us into direct confrontation with “life”
outside of its human forms: forms of breathing, of moving, sensory experiences of the world that
exist at a vast remove from (normative, abled) human life and that necessarily elude us. By living
in a world in which (most) humans cannot, creatures of the sea coexist with us in a kind of
necessary mystery, always at a certain (physical and visual) remove, even in captivity.
Merleau-Ponty writes of the starfish, an echinoderm that can digest food outside its own
body and that can reproduce sexually or asexually, shedding and regenerating limbs when
necessary, that it has “no unity of the living being which unfurls itself towards the outside…it is
a collective animal.”
137
Its total, seemingly seamless immersion in its environment makes it a
particularly compelling subject for phenomenologists; from an ecological perspective, the
starfish, like other sea creatures, is so explicitly (to us) in a constant material engagement with its
environment that it reveals our own immersion in turn. Eva Hayward has also turned to the
starfish as a way of addressing the “phenomenological experience of reshaping and reworking

137
Maurice Merleau-Ponty, Nature, trans. Dominique Seglard (Northwestern University Press,
2003), 169.
124
bodily boundaries,”
138
and places the starfish (and its representation) at the center of a network of
thought about the simultaneous fungibility and unflinching completeness—what she terms
“coherent transformation”
139
—of the body, which she applies to questions of trans and disabled
embodiment. Hayward cites disability theorist Robert McRuer’s call for “a resignification of
cutting and amputation as forms of becoming that are not located in morbidity, fetishism, or
wholeness.”
140
This is key: in the “regeneration” so characteristic of the starfish, we encounter
forms of amputated and shifting embodiment that do not pose threats to bodily integrity but
dissolve the notion of bodily integrity itself.
The syrupy and shimmering element
Marine spaces and life forms also expand our understanding of “body” as a formal concept:
we can recognize them as bodies, or as embodied, despite their vast visual and physical
dissimilarity to us, their fluidity, their unknowability. Here, a closer look at Mel Y. Chen’s work
in Animacies: Biopolitics, Racial Mattering, and Queer Affect is helpful. Chen argues that
“matter that is considered insensate, immobile, deathly, or otherwise “wrong” animates cultural
life in important ways…the fragile division between animate and inanimate—that is, beyond
human and animal—is relentlessly produced and policed and maps important political
consequences of that distinction.”
141
For Chen, the many basic binaries that sustain difference
along the lines of human/inhuman fail to attend to the complex relations and interconnections
between forms of matter and disregard what they call animacy: a kind of agency or liveness

138
Eva Hayward, “More Lessons from a Starfish: Prefixial Flesh and Transspeciated Selves”
(Women’s Studies Quarterly, vol. 36, no. 3-4, Fall/Winter 2008): 76.
139
Hayward, 73.
140
Ibid., 71.
141
Mel Y. Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect (Duke University
Press, 2012), 2.
125
outside of the formally “living.” Lead, rocks, water, viruses—these, as I signaled in my first
chapter, act upon the world regardless of their status as subjects in the human (or even animal)
sense. Thinking about animacy, Chen writes, “has the capacity to rewrite conditions of
intimacy.”
142
The kinds of bonds that form in both The Shape of Water and Rust and Bone rely
on animate forces beyond the human: water, animal, prosthetic.
Water, like the creatures that reside within it, not only troubles the distinction between
life/nonlife and material/immaterial, but, in the context of the film screen, makes evident the
kinds of fantasies that are at play in cinematic representation: fantasies, as I mentioned at the
start of this chapter, of weightlessness and containment, of both boundedness and an immaterial
wholeness, for whom the figure of the disabled woman presents a formidable and singular
challenge. In her compromised body, her non-body, a body stripped of its ability to perform
“normal” functions both social and sexualizing, the disabled woman’s negative embodiment
becomes the primary marker of her personhood, the first thing we see about her, her defining
trait. The excess and hypervisibility of “lack” in the instance of the disabled woman makes it
difficult to read her straightforwardly as an object of the classical Hollywood gaze; and so other
gazes—the water’s gentle, flickering distortions, the oblique eyes of the nonhuman animal—
necessarily come in to play.
Water in both of these films oscillates between that which is easily enclosed, a reflective
medium for looking and for encountering oneself, a depth that obeys the laws of surface, and a
kind of boundless entity, a dissolver of form.
143
For our two protagonists, water is, importantly, a

142
Ibid., 3.
143
Formlessness is a key feature of the oceanic. Erika Balsom writes: “The formless is, in the
words of Yves-Alain Bois, an operation of ‘declassification, in the double sense of lowering and
of taxonomic disorder’—a matter of…[embracing] entropy, horizontality, and a collapse of
126
space in which their impairments are not disabling. For Stephanie, after her accident, it is the
only space where her movement is not obstructed; she is freed not only of the constraints posed
by an inaccessible built environment, but the social norms––of a bipedal, upright body––that
mark her as other. For Elisa, the silent space of the water renders her muteness irrelevant; and, at
the film’s end, the cuts that rendered her mute in the first place transform into gills, openings in
the flesh that now offer her access instead of impeding it. In the water, we can imagine life
otherwise.
But this is not just a question of imagination: it is also one of seeing. Merleau-Ponty, in The
Eye and the Spirit, writes of the particular strangeness and beauty of looking through water:
“When through the water’s thickness I see the tiled bottom of the pool, I do not see it
despite the water and the reflections; I see it through them and because of them. If there
were no distortions, no ripples of sunlight, if I saw, without this flesh, the geometry of the
tiles, then I would stop seeing the tiled bottom as it is, where it is, namely, farther away
than any identical place. I cannot say that the water itself––the aqueous power, the syrupy
and shimmering element––is in space; all this is not somewhere else either, but it is not in
the pool. It dwells in it, is materialized there, yet it is not contained there…”
144

I include this lengthy citation here because it helpfully evokes the way that water is both a
substance and a medium: something seen and seen through, entirely subjected to the structures
within which it is contained while also irrevocably shaping both its environment and the images
it produces. Materialized but not contained, that which is seen through water echoes the peculiar
case of the lived body itself, which Merleau-Ponty describes elsewhere as “not in space like

ontological categories.” Erika Balsom, An Oceanic Feeling: Cinema and the Sea (London:
Govett-Brewster Art Gallery), 31.
144
Merleau-Ponty, Maurice, trans. Carleton Dallery. “Eye and Mind.” In The Primacy of
Perception: and Other Essays on Phenomenological Psychology, the Philosophy of Art, History
and Politics (Northwestern University Press, 1964), 182.
127
things,” but rather, that which “inhabits or haunts space.”
145
And this haunting in turn recalls the
liminality of the camera, present but unseen, bonded to the world it captures and inevitably
manipulating it in turn.
146

Cinema, like the sea, is a medium of surface, a flatness whose depths we see—and
believe—but cannot probe. For Freud, the oceanic feeling is the sensation, or revelation, that
“out of this world, we cannot fall”
147
—that is, a sense of inextricability or of belonging “to the
whole”—a certain dissolution of boundaries. As Erika Balsom has recently written, the cinema,
which bears a similarly “indissoluble connection” to the reality it captures and traces in time, is
also oceanic in its character, embedded in and bonded to the world. Balsom suggests: “the ocean
and the cinema—united by inhuman animus and a penchant for flux—conspire to dislodge man
[sic] from his pedestal.”
148
The camera, like the ocean, provokes and produces types of
perspective and scale that are not readily accessible to the (normative) human sensorium. Much
like Berger’s animal, the ocean, living but not human, seen but never totally, threatens
humankind’s sense of dominance. And here is where disability, as a phenomenon, begins to enter

145
Maurice Merleau-Ponty, (1964) An Unpublished Text by Maurice Merleau-Ponty: A
Prospectus of His Work, (Arleen B. Dallery, Trans.). In The Primacy of Perception (Evanston:
Northwestern University Press,)5, cited in Dolezal: 130.
146
Both of these films made remarkable use of CGI. Rust and Bone relied on CGI to digitally
remove the lower halves of Marion Cotillard’s legs—and occasionally add convincing
prosthetics—in almost every scene in which she appeared. For The Shape of Water, del Toro’s
team used a combination of in-camera techniques and computer-generated imagery for both the
underwater sequences and the amphibian man himself (a performer in a latex suit and makeup),
adding elements in post-production that the film’s technicians referred to, interestingly, as
“digital prosthetics.” Richard Trenholm, “How ‘Shape of Water’ mixes digital effects with
monster makeup,’ CNET, March 2018. https://www.cnet.com/news/how-guillermo-del-toros-
shape-of-water-mixes-cg-and-monster-movie-makeup/. Accessed July 2021.
147
Christian Grabbe cited by Sigmund Freud, Civilization and its Discontents, trans. Joan
Riviere (London: Hogarth Press, 1930), 9, cited in Balsom, 1.
148
Balsom, 19.
128
the picture yet again: it, too, complicates a worldview that imagines the “human” as a stable,
discrete entity, as readily definable and classifiable in the order of all things.
Disability studies offers us ways to think about difference without binaries; it offers us
ways to think about continuity and wholeness without denying difference and absence. Media
studies offers a vital articulation of continuity's relationship to identity and the material
conditions that either produce or disrupt it. Baudry reminds us that for Freud, the unconscious
“manifests itself as continuity destroyed…as the unexpected surging forth of a marked
difference”
149
and so cinema’s work—of suppressing discontinuity—is thus a work of restoring
“both meaning and consciousness”
150
to the viewing subject. In other words, the unity (physical
and ideological) of the subject herself is at stake. And here we might think also of Barthes, cited
in the previous chapter, who notes the physical symptom’s particular “objectivity and
discontinuity,” its resistance to connection and meaning. To be “brought back abruptly” to the
body, to have the experience of synthesis and transcendence disrupted, is here a discomfiting and
disorienting experience. Rather than provoking a sense of plenitude, or grounding the subject in a
physical form, the “failure” of the cinematic apparatus reveals a discontinuity inherent to the
embodied self. For Baudry, cinema, like other post-Enlightenment (i.e., perspectival) Western art
forms, works to transform the fragmented subject into a unified and coherent whole, while
necessarily concealing the work of that transformation. Baudry uses a striking metaphor to
describe this process: it is as if “the subject himself being unable…to account for his [sic] own
situation, it [is] necessary to substitute secondary organs, grafted on to replace his own defective

149
Jean-Louis Baudry, “Ideological Effects of the Basic Cinematic Apparatus,” Film Quarterly,
vol. 28 no. 2 (Winter 1974-75): 42.
150
Ibid., 43.
129
ones, instruments or ideological formations capable of filling his function as subject.”
151
This is a
disability metaphor par excellence, an understanding of cinema, or representational art more
broadly, not as a way of exceeding the body’s limitations but as a way of making up for its
deficits.
Yet it suggests, in keeping with its broader psychoanalytic grounding, that these deficits
are universal rather than situated in specific, marginal bodies. It implies that any experience of
identification through which subject-formation is possible is necessarily undergirded by a feeling
of insufficiency or gap. Baudry continues: what is or feels “disturbing” cinematically always
signifies “the arrival of the instrument ‘in flesh and blood.”
152
The use of “flesh and blood” here
is both figurative and literal: it signifies the instrument’s solidity and materiality, its felt
presence, its ability to arrive, its likeness to a body, which makes it disturbing; and it also
signifies the inseparability of the bodily from the mechanical, the intertwining that occurs when
the machine “sees” and we ourselves see its seeing. And it is indeed this sense of process, of
work, not merely of the manipulation of objective reality but of the changes required to make it
legible, that leads, for Baudry, to a profound destabilizing effect in the viewer.
If we accept that “the eye which moves is no longer fettered to a body,”
153
that is, if the
camera takes on the functions and operations typically associated with the human eye, then it
would seem that cinema would allow for the transcendence of subjectivity, would instantiate a
way of seeing that is fundamentally distinct from that of an operational consciousness. Yet this is
not the case for Baudry. It would appear that “the world’s transfer as image” in cinema
accomplishes the phenomenological reduction by “putting into parentheses…[the world’s] real

151
Baudry, 46.
152
Ibid., 46.
153
Baudry, 43.
130
existence”
154
in order to create the illusion of filmic reality. But, turning to Husserl’s various
elaborations on the phenomenological reduction, he notes that in this very process—the willful
attempt to separate phenomena or their perceptions from states of being in order to finally
apprehend the operations of the consciousness that bring us to the world—what we are left with,
as the central “attribute” of the subject, is continuity itself, the continuity that “supposes the
subject and circumscribes its place,” that allows us as subjects to make meaning out of our
perceptions. And so, while the camera may appear to offer us the possibility of transcendence, its
product—cinema—is unable to escape the sheer force of the ego. The “search for narrative [and
formal] continuity…is a question of preserving at any cost the synthetic unity of the locus where
meaning originates,”
155
that is, the synthetic unity of the subject herself.
In recent work, Joshua Kupetz has proposed a “disability ecology,” one that draws from
both materialist feminisms and queer phenomenology to consider disability’s embeddedness
within a network of human and non-human actors and environments as well as its orientations in
physical and social space. Kupetz argues for a “reimagination of disability as a material-
semiotic
156
artifact and social identity”
157
that is fully embodied, produced in relation, and
capable of transforming the relations that produce it. This is significant, Kupetz writes, because
disability ultimately “reveals the ontological precarity of so-called bounded humans and inert
substances.”
158
In Rust and Bone and The Shape of Water, the supposed bodily “disunity” of the
protagonists is resolved and reversed through their engagement with the murky, unstable space

154
Ibid., 43.
155
Ibid., 44.
156
Here Kupetz is drawing also from Donna Haraway’s use of the term in The Companion
Species Manifesto: Dogs, People, and Significant Otherness (Chicago: Prickly Paradigm Press,
2003).
157
Kupetz, 55.
158
Kupetz, 49.
131
of the water, whose own complex, shifting status, its flows and leaks and spills, reveals the
contingencies that produce and delimit the human body.
In The Shape of Water, the water that overwhelms the film (and nearly every scene is, in
some way, wet, whether through images of rainfall, puddles, mist, bathtubs, buckets, fish tanks)
is constantly shot through with a sparkling light: it has a magical, transcendent quality—put
simply, it is the space of fantasy. The film opens underwater: the camera moves forward easily,
floating, unencumbered, through the floorboards and doors of an apartment building. We drift
alongside algae and rocks and then down a hallway, the lamplight pebbled and refracting much
like the bottom of a pool, and finally into an apartment, furniture and objects floating gently, fish
hurrying past the large windows, Elisa fast asleep a foot above her floating bed.

Figure 56. Elisa's bedroom, filled with water (The Shape of Water)

Slowly, Elisa and her surroundings begin to drift downward, pulled by an improbable
gravity. The film thus immediately makes clear its interest in taming the wildness of the aquatic
132
space, its fantasy of return—to return to my epigraph, “all water has a perfect memory”—of
undoing what water does, of reinstating and re-inscribing boundaries on and around the human
body. Suddenly, we are back on earth––more precisely, Cold War-era Baltimore, cast in a green-
and-black color palette that looks like a photo-negative, traces of the opening scene’s dampness
visible everywhere, misting up the bathroom glass, glimmering on the dark roads.
In my last chapter, I considered the way sickness produces an unsatisfying, incomplete
enounter with the self. And to discuss water is necessarily, also, to think about seeing oneself,
often oneself distorted or even unrecognized. Early in Understanding Media: The Extensions of
Man, Marshall McLuhan turns to the myth of Narcissus. McLuhan is eager to remind us that the
myth has long been misread: it is Narcissus’ ignorance of the image as himself that brings him to
his stupor, not his self-recognition. Regardless, he suggests, Narcissus’ “numbness”
159
in the face
of the image is the direct result of his having become a “closed system,” locked in a perpetual
back-and-forth between his own body and its reflection (i.e., its mediation).
Citing medical researchers, McLuhan argues: “all extensions of ourselves, in sickness or
in health, are attempts to maintain equilibrium. Any extension of ourselves [is an]
‘autoamputation,’”
160
a way of not only extending the body beyond its physical limits but
attempting to remove our “selves” from their fleshly containers. McLuhan goes on to suggest
that this is a mutually constitutive process: “man [sic] in the normal use of technology (or his
variously extended body) is perpetually modified by it and in turn finds ever new ways of
modifying his technology…[he] becomes, as it were, the sex organs of the machine world, as the

159
McLuhan notes that Narcissus derives from the Greek word narcosis, meaning “numbness.”
160
Marshall McLuhan, Understanding Media: The Extensions of Man (Cambridge: MIT Press,
1994), 42.
133
bee of the plant world, enabling it to fecundate and to evolve ever new forms.”
161
Narcissus, also
mentioned briefly in McLuhan’s introduction, only enters the text once later, in the section
entitled “Challenge and Collapse”: McLuhan warns of “the Narcissus attitude,” our dangerous
tendency to regard “the extensions of our own bodies as really out there and really independent
of us.”
162
What about this particular myth brings McLuhan to the language of illness and
disability, of bodily severance? Why is it that this watery reflection, an image which is at once
real and not-real, trustworthy and distorted, not only provokes a crisis of embodiment, but, if we
take him at his word, brings us into a technological relationship with the world and/as image, a
relationship which, in turn, has a reproductive, sexual, and perhaps animal drive, “fecundating,”
as it were, the machine world via the mutable body? We can perhaps read Narcissus’ desire for
his reflection as a practice of mutual modification, wherein his transformative encounter with the
image produces a new reality, which in turn generates new forms of desire.
Near the film’s end, after discovering that the amphibian man is going to be euthanized,
Elisa orchestrates a complex getaway heist, stowing him away in a laundry truck and bringing
him back to her apartment. (His relationship to breath is the inverse of the normative human one:
he can live above water, but only briefly before he begins to suffer.) Elisa rushes him home and
into her bathtub, which she fills with salt, attempting to recreate his ocean home; she nurses him
back to stability. Under constant threat of discovery, as the government officials and scientists
home in on the fugitive creature’s location, Elisa and the amphibian man are finally free to
communicate without barriers, without any enclosures or sheets of glass between them. One
evening, she shyly touches his chest, which lights up; he purrs, and then, suddenly, reaches out

161
Ibid., 46.
162
McLuhan, 68.
134
and strokes her in return, indicating (apparently undoubtedly) his own desire. This is the moment
when Elisa must decide which boundaries she is capable of crossing; flustered, she runs out of
the bathroom and closes the door, only to return moments later, disrobe, and join him in the
shower. Their sexual relationship has begun. A few days later, Elisa attempts the impossible: to
turn her bathroom into a kind of aquatic tank, to enter his world more completely. She runs the
faucet of her sink, cramming the gap beneath the door with towels; she signs to him: “you and
me together.” The room, of course, begins to flood, water leaking through the floorboards and
down below (and, unsubtly, onto a cinema screen—Elisa lives above a movie theater), pouring
fast out the bathroom door, across the apartment and into the hall. Yet in the midst of all this
bursting-forth, all this noisy gushing, Elisa and the amphibian man are suspended in total,
dreamlike stillness, floating in their impossible pool––the water nearly reaches the ceiling, and
Elisa seems to have no trouble breathing––briefly able to coexist with one another in all of their
parts, to create a new reality that transcends the sum of their bodies. Is the amphibian man
becoming human (as we saw hinted at in his virile, bipedal stance upon our very first meeting),
or is Elisa becoming animal? Or is it neither? Chen writes:
“it is by interactions of substance with human countervalences—(trans)substantiation—
that animals may achieve their final form (for humans) or, more significantly, by
interacting with animal countervalences that humans achieve their final form. This
transsubstantiation has repercussions outside an intellected analogy. It extends beyond
intimate coexistence in that it is not only substantive exchange, but exchange of
substance, and thus cannot be understood in terms of pure ontological segregation. In
some sense, the animate leakage within the strictest hierarchy is what paradoxically
enables that hierarchy to become what it is imagined to be; biopolitical governance,
conspiring with the “rehoming” assertions of those who traffic wrongly, steps in over and
again to contain these leaky bounds.”
163

163
Chen, 129.
135
In this moment of leaky, intimate coexistence, of quite literal exchange of substance, it is their
differences that come into their fullest articulation.

Figure 57. Elisa and the amphibian man make love (The Shape of Water)

Elisa and the amphibian man are not engaged in a normative “sex act,”
164
per se, but rather,
the film suggests, fulfilling the fantasy that provokes it, a fantasy of boundlessness and of mutual
recognition—a fantasy that, if we follow Chen, underlies its exact opposite, that is, the
reinforcement of difference and separation. Their own stupor, their blissful unawareness of the

164
It is also worth noting here what Chen says about water: “Both air and seawater are the stuff
of blends, the stuff of human, animal, and godly mattering. If lungs no longer critically matter for
breathing, then the material difference between air and water also dissolves. The air-seawater is
also the stuff of sex, of the sensuous, sensible exchange of breath, fluids, and parts; of meetings
and interpenetrations which may be “actual” or “virtual,” within which we need feel no
particular responsibility to any exceptional organs; of reproduction, of penetration, of reception,
of animacy itself. (Animacies, 230).
136
rapidly encroaching outside world, suggests a total dissolution of the boundaries between self
and other; an unsustainable fantasy made possible at least in part via its mediation, the camera’s
ability to live and see in this nonhuman space. Nothing is audible save for the film’s sweeping
score; the camera here, as in the opening sequence, moves back and forth impossibly through
walls and floors, revealing and reveling in the set’s artificiality, no boundary impermeable to it.

Misfitting and flux: feminist readings of disability
Citing Merleau-Ponty’s suggestion that the blind man with a walking stick is no less
aware of his “posture in the world” than the sighted one, Margrit Shildrick argues that “to have a
disability, whether congenital or acquired, varies, but does not break, one’s immersion in the
flesh of the world.”
165
No amount of “bodily difference” can take the living subject out of the
world, even when bigoted socio-political structures, and the imaginaries they engender, try their
hardest to do so. From a more materialist angle, Rosemarie Garland-Thomson has offered the
concept of “misfitting” as another way of understanding the relationship between the disabled
subject and her built or arranged environment: Garland-Thomson understands the relationship
between body and world to be a dynamic one which produces “misfits” (here she also puns on
the word “misfit” as both a denomination and a phenomenon) when one half of the equation––
body or world––fails to meet the other on its terms. For Garland-Thomson, misfitting “focuses
on the disjunctures that occur in the interactive dynamism of becoming,”
166
and in so doing
emphasizes the encounter between the subject and her environment, successfully bridging the
theoretical gap between an embodied and a social model. Much as Shildrick’s emphasis on

165
Margrit Shildrick, Dangerous Discourses of Disability, Subjectivity, and Sexuality (London:
Palgrave MacMillan, 2009), 37.
166
Garland-Thomson, “Misfits,” 594.
137
immersion and experience is rooted in a feminist insistence on the significance of the corporeal
to subject-formation, Garland-Thomson’s concept of misfit is also derived, in part, from the
work of material feminists such as Karen Barad, Elizabeth Grosz, and Donna Haraway.
A turn to these thinkers brings us, perhaps surprisingly, not only to thinking about
environment but back to the question of desire—of Eliza’s shy “you and me together.” What
does a material-semiotic understanding of the body have to do with feeling, romance, wanting
(and in this case, a bestial, transgressive, doomed wanting)? Kafer has argued against the
pervasive notion that the “natural environment” is somehow free from “builtness” or social
arrangements. She proposes “a feminist/queer/crip ecology [that entails] approaching nature
through the lenses of loss and ambivalence,”
167
one that recognizes the irrevocable and harmful
impact of social structures on the natural world but seeks out affinities and interactions
nevertheless. In Volatile Bodies: Towards a Corporeal Feminism, Elizabeth Grosz writes:
“Desire is an actualization, a series of practices, bringing things together or separating them,
making machines, making reality.”
168

Understood in this way, desire is thus the fantasy of total mixture or its corresponding
fantasy, of total separation; it is not just embodied, but equally a technological fantasy, a media
fantasy (as McLuhan would have it), that produces reality itself. Desire is also integral to these
films in a more literal sense, for the simple fact that they are both narratively organized around
romantic and sexual relationships. The disabled woman’s forced exclusion from the sphere of
sexuality is also a key concept for feminist disability studies. Alexa Schriempf (2001) has written
about some of the paradoxes inherent in this subject position: unlike the abled woman, she

167
Kafer, 142.
168
Elizabeth Grosz, Volatile Bodies: Towards a Corporeal Feminism (Theories of
Representation and Difference) (Indiana University Press, 1994), 165.
138
argues, the disabled woman may not always want to resist sexual objectification, because the
alternative is not social or sexual equality but rather, a patronizing attitude that imagines her as
childlike and sexless.
169

Moreover, her exclusion from certain conventions of femininity means that she may have other
divergent political aims from her fellow feminists, particularly white, abled, cisgender and
heterosexual feminists who have repeatedly been given the broadest visibility: fighting against
forced sterilization rather than the imperative to bear children; seeking accessible government
benefits rather than the right to enter the workforce. Schriempf argues for an “interactionist”
paradigm of disability and a model (rooted in these divergent aims) she describes as “re-
fusal,”
170
a pun that illuminates the doubt she casts on “impairment” and “disability” as stable or
separable categories as well as her desire to connect them, or more precisely, to form a prosthetic
relation between them.
171

Both The Shape of Water and Rust and Bone very explicitly suggest that their heroines’
disabilities are directly related to their desirability and their sexual viability, and their choices in
romantic and sexual partnership. Moreover, the fantasies they engage are fantasies of blending,
of mixture: in Rust and Bone, both Ali and Stephanie have experienced major ruptures—for Ali,

169
“Because disabled women are seen as being helpless, childlike, or defenseless, they are
denied the “choices” that trap able-bodied (white) women.” Alexa Schriempf, “(Re)fusing the
Amputated Body: An Interactionist Bridge for Feminism and Disability” (Hypatia vol. 16 no. 4,
fall 2001): 60.
170
Schriempf, 69.
171
By “prosthetic relation” here I mean, broadly, in the colloquial sense of a hybrid relationship
in which two entities come together to form one body; however, I also consider this in terms of
David Wills’ concept of the prosthetic as that which “mediates between the realm of the literary
and the realm of the body” (cited in Snyder and Mitchell, Narrative Prosthesis, 7), as well as
Bernard Stiegler’s definition of the prosthesis as “not a mere extension of the human body; it is
the constitution of this body qua ‘human’” (Stiegler, Technics and Time, 152-3). Each of these
definitions points us in a different way to the way prosthesis is connected to legibility, to
mediation, and to the category “human.”
139
a painful jolt into single fatherhood, for Stephanie, of course, her accident—and must learn to
bring their new lives together; and in The Shape of Water, in a much more extreme move, a
blending of habitats, a blending of species.
In order to blend, the films seem to suggest that we must first be cut in some way. “What is
more intimate or essential to bodies,” Deleuze asks at the start of The Logic of Sense, “than
events such as growing, becoming smaller, or being cut?”
172
The heroines of both these films are
marked by cuts: Elisa has a set of deep cuts across her throat that render her mute, and her
encounter with the amphibian man, as we have seen, is precipitated by his biting-off of two of
his captors’ fingers; and Stephanie is a double amputee, her legs cut off below the knee.
Schriempf offers a dual meaning of amputation, as both a biological and social process. The
amputee, she writes, is defined by her physical cut, by her body’s purported lack, and, more
broadly, she is herself “cut off” from her “richly interwoven social, cultural, psychological,
physical, and biological environments” via a lack of access.
173
These linguistic turns exemplify
the feminist disability studies commitment to encounter and interactivity, to the inherent
mutability of meaning, a mutability that is both embodied and metaphorized in these films.
174

Boundary crossings
I turn now to the scene of Stephanie’s accident in Rust and Bone. She is the head of her team
at Marineland; as the scene begins, the whale trainers move briskly around the “backstage” area
while cheerleaders warm up the crowd. People are seated on risers around a vast, deep pool, and

172
Deleuze, The Logic of Sense, 5.
173
Schriempf, 58.
174
As Garland-Thomson and others have noted, this is a political move: it is the basis for a
feminist ethics of care, which emphasizes dependency, not autonomy, as the basis for a
collective morality (see “Misfits,” 599).
140
a large screen is mounted over the platform where the trainers perform. We are privy to both the
scene unfolding and the screen within the frame, which displays fuzzy, close-up images of what
is happening right below. As the trainers take the stage, their faces are amplified above them.

Figure 58. Stephanie is projected on the screen at Marineland (Rust and Bone)

The inclusion of the screen is significant here. The cinema screen has an unimpeded
wholeness—it is fixed, both temporally and spatially. That is, the screen itself does not shift or
change shape as a film plays, is not made more or less whole by the images projected onto it; and
the film itself is necessarily a temporal whole, a mechanized recording of something which has
always already passed by the moment of viewing. At the same time, the camera necessarily
fragments the world and the body. It always sees only what it sees and nothing else. The film
image always has boundaries, always cuts off and is cut off from the world. The ongoing and
irresolvable tension between this wholeness and this cutting renders irrelevant, in a sense, the
possibility of mis-fitting. Everything fits in the cinematic frame, even while all presence in the
141
cinematic frame is necessarily partial, photographic, a trace. Thus the inherently misfit encounter
between the world and the apparatus that produces the cinematic image yields something that,
like the regenerating starfish, like disability, muddles the boundary between whole and unwhole.
As the show begins, the music mounts: the trainers begin a choreographed routine with the
whales, giving them food in exchange for tricks, which the animals execute in perfect unison.
For a brief moment, the fantasy of total control is sustainable: in this enclosed space, these
massive creatures appear to have been entirely bent to human will, and, to recall Berger’s
terminology, they are correspondingly “properly visible,” perfectly suspended between the
audience and the screen that reflects them. The scene begins to shift in tone before anything new
has taken place: the music of the arena, Katy Perry’s empowerment-pop anthem “Firework,” is
replaced by a somber score, and suddenly the camera comes closer to the whales, in slow
motion. It lingers on the water flung off their bodies and the pool’s surface, foamy and sharp.
This is a different world: the animal world, slow and silent; but also the cinematic world,
capable of manipulating time, space, scale. The camera plunges underwater: pure haptic imagery,
all bubble and blue. Only the thinnest film––the water’s surface––separates all of the chaos
above from this vast quiet. Once underwater, the camera begins to lose its sense of orientation:
with nothing else visible in the frame, we see only color, texture and movement, faced with the
awkward clunkiness of the underwater machine, its own loss of stability and grounding, not at all
like the smooth, uninterrupted flow of del Toro’s underwater image. The image bounces almost
playfully back and forth, above and below.
Suddenly, though, one of the whales jumps up onto the platform and hurtles forward, its body
crashing toward the trainers. The camera appears to fall into the water alongside the surrounding
objects as the body of the orca, and then huge pieces of debris, come crashing into the pool; there
is total silence. One such piece of debris fills the frame as it floats by, drifting away to reveal a
silhouette––Stephanie’s, we quickly understand––limply suspended in the water, a shock of
blood pouring from her form, bright red against the blue. The next we will see of Stephanie is in
142
her hospital bed, awakening to discover that both of her legs have been amputated below the
knee. In this moment of rupture, Stephanie becomes briefly unbounded, her body and her blood
disintegrating into the water.

Figure 59. Stephanie's accident (Rust and Bone)

Much like the mixture of blood and water that precipitated Elisa’s meeting with the
amphibian man, this moment represents an instance of contamination that catalyzes the rest of
the narrative. I think here of the first two epigraphs with which I started this chapter, of the ways
water troubles our sense of difference, and of the ways that water reminds us of the paradoxical
permanence of fluid processes, the irreversible diffusion of matter across space––the drop of
wine lost forever to the ocean, the ongoing formation of the new body. What caused this accident
exactly––a breakdown in communication between woman and animal, a transgression on the part
of the sea creature who tried, however fleetingly, to join mammals on land? In this moment the
animal switches instantaneously from a compliant captive to an unknowable and unpredictable
force, a source of fear, capable of upending human life and embodiment. The ambiguity of the
143
orca’s “fault” in this moment, too (and here we might also return to Wald’s notion of the carrier),
speaks to a set of philosophical questions that have been raised about the agency and desires of
animals, a set of questions that are treated quite differently in The Shape of Water.
After her accident, Stephanie is traumatized and suicidal. She eventually calls Ali, who is
enough of a stranger to her that his possible judgments feel, perhaps, irrelevant. Ali insists on
taking Stephanie outside for some fresh air; when he asks how long she has been in the
apartment, she can’t confirm whether it has been two months or four. Her confinement has
warped her sense of time, pulled her out of the cycles of social life. Her wheelchair is unwieldy
on the pavement outside her apartment, her kitchen table uncomfortably high; these are, very
patently, environments that were not built with her in mind.
Ali brings Stephanie to the beach. He carries and lowers her, unsteadily, into the sea:
although the sound—water, wind, gulls—remains continuous as she begins to swim, the scene is
punctuated with a series of jump cuts, a stark contrast to the smooth flow of what is contained
within the frame (the lapping of the waves as well as Stephanie’s own graceful breaststroke). A
negotiation is already at play between the sharpness of the cinematic cut and the smooth whole
(narrative, visual, temporal) into which it is inevitably subsumed, between the marked
“difference” of Stephanie’s body and the ways her impairments seem to pause, or to vanish, the
moment she enters the water. As viewers, we remain at a slight remove—lifted above the action,
never puncturing the water’s surface.
175
We never venture into the depths.

175
As a counterexample, we might think of the swimming lesson sequences in Barry Jenkins’
Moonlight, where the camera is half-submerged and splashed-on, to great effect.
144

Figure 60. Ali helps Stephanie float (Rust and Bone)

Unlike the accident sequence, in which the camera’s materiality was—ironically—
foregrounded by its clunky movements in the smooth, immaterial space of the water, here the
camera conceals its presence in a more conventionally cinematic way, suspended at an inhuman
angle. The jump cuts become fewer, farther between. We have, in short, reentered the visual
economy of heterosexual relations. A subtle eroticism is already at play. As Stephanie tries to
remove her long-sleeved shirt, she begins to sink, her body’s center of gravity still unsteady and
new to her. Ali rushes to her side, lifts her up, and helps her to undress. Soon, the gurgling and
splashing of the water is joined by Stephanie’s breath, her gasping, her moans of pleasure as she
finds her way to floating. She summons Ali to transport her back onto dry land: the image of her
on his back as they return to the beach chairs evokes, simultaneously, the cliché of the
hypermasculine hero carrying his damsel to safety and, more sweetly, the kind of
145
interdependence—a sharing of limbs, a non-transactional gesture of care—celebrated by feminist
scholars and disability scholars alike.

Figure 61. Stephanie rides on Ali's back (Rust and Bone)

In the water, Stephanie’s body does not affect her experience in the same way as it does
on land; she is able to successfully indulge her own fantasy of return––not just in an
anachronistic sense, considering the ocean’s many associations to the womb, to formlessness, to
the pre-discursive––but also to the place where, we can imagine, as a diver and whale trainer, she
would have spent the majority of her time prior to her accident. But most importantly the water
serves to re-shape her environment, because sitting and standing are not water categories: she is
not a misfit here.
Over the course of the film, Stephanie and Ali’s narrative arcs begin to intertwine via
their regular meet-ups at the beach. Their lives are otherwise very different. Ali, struggling to
adapt to the demands of single fatherhood, has begun a new job installing security cameras, but
146
makes extra money on the side as a street fighter. Stephanie, who is not employed, begins the
grueling physical and emotional work of adapting to her prosthetic limbs and to her new identity
as disabled. Their relationship eventually turns sexual; after inquiring about her dating life, Ali
offers, nonchalantly, to have sex with her one afternoon “to see if it still works.” Despite her
initial ambivalence, she accepts his offer and they have sex; afterwards, he extends his offer:
whenever he’s available and opé (operational), he’ll come by. Ali’s move to objectify both of
their bodies in this way, via their ability to “work” or “operate” (and the medical pun is also not
lost on us here), is what allows him to transcend the abled/disabled distinction between their
bodies in this moment. He leaves, and Stephanie wheels herself out onto her balcony to gaze
upon the harsh, industrial (and, notably, inaccessible and inhospitable) landscape beneath her.
“Firework” swells again in the score. She begins to practice the hand signals from her whale-
training routine, slowly, at first, and then with increased confidence, for an inanimate audience
this time, an absent animal. The camera focuses on her hands, sending signals out to nowhere;
what matters is not the meaning of what she signs but the motility and liveliness of her body, her
renewed understanding of its operationality and capacity for expression. It is immediately
following this scene that Stephanie returns to Marineland to see the orca.
147

Figure 62. Stephanie practices her hand signals (Rust and Bone)

While I disagree with Ruth Kitchen’s suggestion that what she deems Ali’s “social disability”
(i.e., his low/outsider socioeconomic status) is what allows him to emotionally connect with
Stephanie after she becomes disabled, I am compelled by her assertion that the film’s central
interest lies in “the moving of bodies in and out of their ‘natural’ habitats and the negotiation of
environments and interactions with and without prostheses…[toward] new sensorial
experiences.”
176
Where Kitchen’s interest lies in the social critique offered by Audiard’s
narrative deployments of disability,
177
I am drawn instead toward the concepts of natural habitats

176
Ruth Kitchen, “The disabled body and disability in the cinema of Jacques Audiard,” Studies
in French Cinema (vol. 16 no. 3, 2016): 237.
177
Kitchen writes: “Jacques Stiker’s notion of returning (retournement), where disability
functions as shorthand for social problems or the monstrous side of human nature, and by which
the disabled character is restored to ‘normality’ through the recognition of a common human
fate, does not apply here (Stiker 2003, 130). Equally, I do think these films conform with the
comfort narratives I discussed in the introduction. Although disability in these films is shown to
relate to and indeed create social exclusion, and although the problem of employing able-bodied
148
and environments she invokes here, concepts that bring us back to thinking about the film’s
interest in aquatic life, in spaces (like Marineland) where that life is rendered visible—and,
importantly, threatening—through its (unnatural) containment, and, in contrast, spaces where its
presence merely haunts, unseen, beyond (like the beach). If disability in visual art so often
functions, narratively and visually, as a reminder of the fragility and contingency of human life,
here it also reveals the imbrication of body and environment.
In The Shape of Water, this imbrication is pushed one step further. Early in the film, we
see Elisa enact her “morning routine” (it is technically evening, because she works the night
shift, in another one of the film’s gestures towards the under-side, the unseen and other, and the
space of dreams and illicit yearnings): she gets up, fills both her bathtub and a saucepan with
water, hard-boils eggs while she washes her body and masturbates in her nearly-overflowing tub,
leaves the bath as soon as her egg-shaped timer tells her her food is ready, gets dressed, brings a
snack to her disheveled neighbor, and heads to work on the bus.
The egg will, importantly, become the catalyst for Elisa’s relationship with the amphibian
man: after becoming aware of his presence in the lab and his abuse at the hands of the scientists,
she offers him part of her lunch and teaches him the Sign word for “egg.” Shy at first, the
amphibian man begins to trust Elisa, and then, slowly to communicate back to her. The montage
that follows (rather heavy-handedly) indicates their growing love through an ever-increasing
number of eggs, brought by Elisa, laid out as a kind of offering on the surface of the amphibian
man’s pool. Her desires are made plain: if wetness materializes a vision of feminine desire, the

actors remains, the characters do not ‘return’ to social integration or acceptance, thus providing
comfort. Instead, their alliance presents and promotes non-conformity to the status quo. Through
the exposure of their vulnerabilities, the characters learn that interdependence and collaboration
are in fact more empowering than independence.” (Kitchen, 240.)
149
egg—shared biological feature of woman and animal, figured here as both an object of
communication and consumption—stands in for the (taboo) mixture of the two, their site of
convergence. I want to pause on the egg: its promise of a nonhuman future, its own liminal life-
nonlife status, its particular goopiness that places it squarely between the liquid and the solid, its
connotations of fertility and femininity, and its associations with shattering, with the
irretrievable. The egg is at once ecological––an element of the natural world––and un-ecological,
enclosed, separate, a tiny ecosystem all its own, much like the snow globe-like, irreal world that
Elisa and the film appear to inhabit. In The Brothers Grimm’s version of Bluebeard, the plot
turns on neither a stained key nor a ring-bearing finger: it is an egg, given to the newest bride to
hold and never lose.
178
The egg’s fragile boundary is the boundary between life and death.

Figure 63. Elisa lines up eggs for the amphibian man (The Shape of Water)

178
Bettelheim, 299.
150
And there is another fragile boundary here, between woman and animal (monster?), that
is being tested. Berger describes the human-animal relationship as one of “unspeaking
companionship,”
179
one that can just as easily be understood through the lens of the human’s
failure to understand the animal as through that of the animal’s inability to speak our language.
Elisa and the amphibian man bond over their muteness, a muteness which renders them at once
mysterious and marginal. In the introduction to A Thousand Plateaus, Deleuze and Guattari
wonder: “is it not first through the voice that one becomes animal?”.
180
In my first chapter, I
considered the ways Carol White’s wordless vocalizations—as well as her inability to properly
vocalize her experience—paradoxically made her into an object-to-be-read while also flattening
her into meaninglessness. In my next chapter, I will also consider the implications of the voice
when it is displaced and disembodied by non-normative sensory-motor experiences of the world.
Here, in the watery screen space where everything is all mixed up, the voice—just as potent in its
absence as in its presence—allows woman and animal to become more like one another, to
become towards one another, to encounter one another wholly and in depth.
I wonder what kinds of “new reality” are produced when the cinema explicitly attempts
to represent the formless, the (so-called) deformed, that which refuses total fusion. Put otherwise,
how do we reconcile the fact of our total and shared immersion in the world with the material
realities that produce difference, marginality and exclusion? Disability approaches force us to
think critically and seriously about the relationship of form to content in and on our bodies. The
fact of disability—which is at its root simply the fact of the diversity, complexity, and
malleability of human life—makes it clear that any “totality” we encounter (cinematically or

179
Berger, 6.
180
Gilles Deleuze and Felix Guattari, A Thousand Plateaus, trans. Brian Massumi (University of
Minnesota Press, 2005), 4.
151
theoretically), any system that presents itself as whole, is always heterogeneous and multiple, no
matter how impossible it may be to separate out its parts.
181
In the narratives of these films, we
can begin, however tentatively, to locate a perspective which takes loss and bodily unwholeness
not as inherently negative, but as a starting point for engagement with the environment—
something like Kupetz’s disability ecology, open to the “slippage between animate and
inanimate materiality”
182
that both disability and sea creatures reveal. And water persists
throughout: the slippery, translucent substance in and through which otherness becomes,
ripplingly, visible.

181
In an important corrective to ecocritical work that overemphasizes our enmeshment in the
world, Sharon Betcher has suggested that the “reification of wholeness…territorializes life
without recognizing its powers of disorganization, rupture, disjointedness or incommensurate
goals.” Sharon Betcher, “The Picture of Health: Nature at the Intersection of Disability, Religion
and Ecology” (Worldviews no. 19, 2015): 13.
182
Kupetz, 49.
152
Chapter 3

In the absence of light, did they hear the blast of trumpets?
183

I decided to make Blue without images - they hinder the imagination and beg a narrative and
suffocate…the admirable austerity of the void.

-Derek Jarman, Smiling in Slow Motion

I wanted to…introduce the experience [of being hard-of-hearing] to a hearing audience so that
they conceptually and physically have to reconcile with missing information as a productive
method for encountering stories.

-Alison O’Daniel, interview with Anne Ellegood for BOMB Magazine

The first time I saw Derek Jarman’s Blue (1993) was at The Getty Museum in Los
Angeles, on an evening in late 2016. The film, which was Jarman’s final completed work before
his AIDS-related death in 1994, famously features, in lieu of a moving image, a still blue screen
accompanied by an hour and sixteen minutes of spoken word, music, and sound, much of which
directly recounts Jarman’s experience of disease and the deterioration of his vision in the final
years of his life.
A film screen had been mounted outdoors; we sat on folding chairs set up on the
museum’s garden terrace, surrounded on all sides by the building’s stone in its gentle shades of
white and cream, alternately rough and gleaming. From my seat, near the back of the crowd, I
could only see the whole screen if I tilted my head. As dusk turned to night, the glowing blue of
the film came into sharper and sharper focus, the rest of the apparatus—the black edges of the
screen, the beams holding it up—dissolving into the dark. Along with the fifty or so other
attendees, I sat spellbound, entranced by the gently flickering blue, shivering as the film’s audio
track—choral music and church bells, Jarman’s singular and beautiful speaking voice—rose up

183
From Blue dir. Derek Jarman, Zeitgeist Films, 1993.
153
around us and floated into the tile. An image posted to the Getty Museum’s website in advance
of the screening haunts me still:

Figure 64. A promotional image for Derek Jarman's Blue, featured on the website of the Getty
Center in Los Angeles, 2016

What is so thrilling and strange to me about this image is the way that it is at once a clear
digital collage—Jarman’s blue screen overlaid on an image of the terrace at sundown—and yet
in some ways a totally accurate rendering of the film screening (which had not yet taken place)
itself, more accurate, I would argue, than any photograph taken that night would have been. The
flat blue of the screen here turns the rest of the world into a thick, deep, changeable (moving)
frame. Blue is the void at the center of seeing, the constant against which time becomes visible.
The image is of, at once, any moment from the film, and the whole film, and yet in its stillness
154
and silence is entirely different from the film. And of course the format of this outdoor
screening—an HD digital transfer of a 35mm print—is also at once entirely different from the
film’s original format and perfectly consistent with it: Blue premiered as a Channel 4/BBC Radio
3 TV/radio simulcast and as a film screened in a London movie theater, but it existed before
then, too, as painting, as journal entry, and would go on to exist as CD and published text, and
later still, to be posted on streaming platforms online.
184
The image on the Getty’s website is thus
perhaps not of the film so much as it is in the tradition of the film: at once site-specific and
unchanging, a surface that calls forth everything it is not.
Derek Jarman’s life and career can hardly be summed up in a paragraph, but I will try.
Jarman was, among other things, a prolific writer, filmmaker, and set designer. He was openly
gay and an activist for LGBTQ rights in the UK from the 1970s onwards. By the time of Blue’s
release, Jarman was quite a well-known figure in the UK and abroad. The text for Blue is in part
drawn from diary entries in what would later become Chroma, Jarman’s meditation on color.

184
In a 2021 essay on Jarman published in Art Papers, Christopher Robert Jones makes the
salient point that Blue’s multiple and variable formats model a kind of accessibility: “The
formats in which Blue existed before its formal release, and the various modes in which it was
made available simultaneously, decentralize its content and resist simplistic interpretations. Blue
provides multiple points of access that are not indexed by a “primary” or “intended” format
through which to experience the work. Modes that would typically be considered supplemental
in a film-based interpretation—where text is “script,” and audio is “soundtrack”—actually reveal
how Blue deals with notions of sensory loss. For example, the writing for/text of Blue can be
found across numerous publications, including Jarman’s memoirs and journals, the booklet that
accompanies the CD version, and as a chapter in Jarman’s last book, Chroma. These text-based
formats, which predate the film version, disrupt our understanding of a script as text that needs to
be vocalized or externalized to be fully instantiated. This multiplicity draws our attention toward
the text’s function as a space of Queer or Crip interiority. Blue’s formal variants allow us to
reflect upon the ways that art leverages a series of ability-based assumptions (read requirements)
to construct an interpretive space for the work to be parsed or understood. Blue complicates
singularly formatted work and reveals the degree to which that singularity relies upon willful
inaccessibility.” Christopher Robert Jones, “Blue Cripistemologies: In and Around Derek
Jarman,” Art Papers, Summer 2021. [https://www.artpapers.org/blue-cripistemologies-in-and-
around-derek-jarman/]
155
So much has been written about Blue that it feels both daunting and futile to attempt to add
my own voice to this conversation. But not only do I understand my work here in the terms of
Leo Steinberg’s delightful assertion, in his essay on Las Meninas, that to write about something
that has been discussed ad nauseam ought to be understood less like getting in a long line at the
supermarket and more like playing a famous and difficult piece of music
185
(and indeed, as I
have just indicated, a sense of reproducibility and contingency is an essential element of Blue
itself), but I also want to consider some of the ways the film has not as often been discussed: as a
piece of disability media, and as a documentary. A great deal (and rightly so!) has been made of
Blue’s status as a key work of New Queer Cinema, as a deeply influential experimental film, as
part of the multimedia oeuvre of an extraordinarily prolific and inventive artist, as a turning point
in the history of AIDS media. But I am curious also about Blue’s relationship to knowing, to the
knowable and known, to blindness understood not as merely the absence of vision but as a
particular mode of encountering the world. I am curious, more specifically, about what it can
offer to the study of disability documentary. I can do this, perhaps, by bringing Blue into
conversation with a much lesser-known work.
***
A 2018 exhibition of a new segment of Alison O’Daniel’s as-yet-unfinished nonfiction film,
The Tuba Thieves, saw the screen mounted in the middle of an enormous industrial space. The
exhibition took place in downtown Los Angeles and was organized by Los Angeles Nomadic
Division, a local arts nonprofit. O’Daniel’s twenty-minute film segment looped while two
musicians, Helga Fassonaki and Omar Corona
186
wandered around the room playing the score on

185
Leo Steinberg, “Velazquez’s Las Meninas,” October Vol. 19 (Winter 1981): 45.
186
Corona is an alumnus of one of the high school marching bands featured in the film
(Centennial High School Marching Band) and is also featured in several scenes of the film.
156
trumpet; as the physical distances between their instruments, and their proximity to us as
audience members (who were also encouraged to move throughout the warehouse), shifted, so
too did the relationship between image and sound.

Figure 65. A performance of a segment of Alison O'Daniel's The Tuba Thieves at Los Angeles
Nomadic Division, 2018

In a recent interview with me, O’Daniel, who is hard of hearing, noted that the shifting
geolocation of sound is, for her, an important element of her experience; she cannot always
immediately match a sound to its source in space around her. In mining this experience for its
performative potential, O’Daniel not only alerts us to its aesthetic richness but to the hearing
audience’s typical inaccess to this experience of space and sound, a move she performs over and
over throughout her work. The Tuba Thieves asks how different forms of access—to space,
language, knowledge, and visibility—produce a knowing and known cinematic (and social)
subject.
157
O’Daniel is a hard-of-hearing filmmaker and visual artist. She has been working on the film,
a project sparked by a real-life string of tuba thefts at Los Angeles high schools, since 2013.
187

The Tuba Thieves is a multi-screen, mixed-media film project
188
composed of multiple short
segments, loosely organized around the production and reception of sound. Among others, these
segments include imagined stagings of the tuba thefts, the practice sessions of a deaf drummer
named Nyke Prince, walks with deaf high school students and community members, abstract
meditations on plant and sea life, and re-enactments of the final punk show at San Francisco’s
famed Deaf Club as well as the inaugural performance of John Cage’s 4’33” in Woodstock, New
York. Like Blue, The Tuba Thieves is not exclusively about sensory-motor disability, but it is
shaped by it at every turn.
To write about each of these films is necessarily to write about one’s own experience of
viewing them. This can, of course, be said of any films, but these are experimental films that
work to explicitly jolt the spectator into a particular self-awareness, an experience of viewing
whose object is, in part, the experience of viewing. Like Bergson’s moving mirror,
189
we, as
spectators, find ourselves beside ourselves in these films, negotiating our position and our
understanding relative to them in time and in space—not in spite of, but because of their
absorptive, mesmerizing qualities. In this way, Blue and The Tuba Thieves and In My Language
are not all that different from other experimental films (Stan Brakhage’s opaque surfaces, for
example, produce a similar effect to Blue) or, even, from any number of contemporary

187
“Tuba Thefts Plague California Schools,” The New York Times, February 10 2012.
https://www.nytimes.com/2012/02/10/education/tuba-thefts-plague-california-schools.html
188
Certain exhibitions of The Tuba Thieves have incorporated sculptural objects and live
performance alongside screened media (see fig. 2 for an example).
189
Henri Bergson, Matter and Memory, trans. Nancy Margaret Paul and W. Scott Palmer
(London: MacMillan, 1912), 135.
158
documentaries that actively question their own forms of knowledge-production as they unfold.
So a phenomenological approach—one rooted in thinking of the embodied experience of
spectatorship—and a documentary-theory approach both feel warranted, if individually
insufficient, in this case. But it is in the intersection of the two, and their connection to sensory-
motor disability, that I locate something more unique.
In this chapter, I primarily read The Tuba Thieves alongside Blue as significant interventions
in disability nonfiction, and In My Language, at the chapter’s end, as a key adjunct to both. In
recent work on phenomenology and documentary time, Malin Wahlberg has suggested that
“documentary films are commonly driven by the incentive of a quest, because many of these
narratives hope to provide a revelatory insight into a social or historical realm.”
190
This “quest,”
Wahlberg argues, gives rise to a particular temporality in documentary cinema that is produced
by, simultaneously, the forward movement towards knowledge with the movement backwards,
into historical and social memory. But these documentaries, as well as the film I will examine
more briefly at the chapter’s end—Mel Baggs’ 2007 In My Language, a short film about Baggs’
experience of language as a nonverbal autistic person—dwell in a very different temporal space,
one that does not guide us towards its object but around it, drawing our attention time and again
to documentary cinema as a form of encounter. As documents of and about, respectively,
blindness, deafness, and muteness, these films engage productively with the relationship of
knowledge to absence—absence of image, absence of sound, absence of language. They are
invested in a kind of knowledge production; but knowledge here is produced through a series of
encounters, through imagination and metaphor.

190
Malin Wahlberg, Documentary Time: Film and Phenomenology (University of Minnesota
Press, 2008), 40.
159
I conceive of metaphor here not merely as a linguistic tool or symbolic function but as the
point of contact between representation (authorship, image) and interpretation (understanding,
reading), a site of co-constitutive, transformative, and partial encounter. The metaphor enacts a
kind of mutual transformation, in which both halves of a comparison are altered by the presence
of the other. What goes necessarily unspoken in the metaphoric structure is what is actually
shared. Whatever is shared thus serves as the empty center around which difference is
established and can flow back and forth. This understanding, I argue, allows us to understand
these films as metaphorical without imagining that they are necessarily symbolic.
To be a bit more grounded: in no way do I want to suggest that these films “recreate” the
experience of blindness or deafness in sighted or hearing viewers. Not only is this kind of
analysis a patent erasure of blind and deaf viewers, but it is limiting and reductive in myriad
ways. Beyond the fact that I do not think it possible to genuinely simulate an experience of
disability for an abled spectator (and experiences of disability are as varied as there are people
and circumstances), but these films rely on both the visual and aural. The so-called “absence of
image” in Blue does nothing to undo its status as visual object (and its clear allusion to Yves
Klein’s International Klein Blue connects it to painting, an inarguably visual medium). The
sound and score in The Tuba Thieves, while flexible and often surprising, nevertheless
interpellate a hearing spectator. It is also important to note that neither Jarman nor O’Daniel will
be read here (nor, significantly, have they presented themselves) as representatives or
“spokespeople” for blind or deaf communities or histories. Indeed, their own highly specific and
partial relationships to sensory disability cannot be ignored. Jarman was sighted for most of his
life, and O’Daniel, who is hard-of-hearing (not deaf) and does not sign, has been adamant in
160
interviews with me that while she feels deeply indebted to, and connected to, her peers in deaf
artist and activist communities, she does not herself identify as deaf.
These works are also at a pointed remove from the autobiographical. Though Jarman’s
more directly engages with his own life, his failure to appear on screen, his voice’s commingling
with other voices and noises, and his insistently non-linear and digressive narration works
against the creation of a consistent or unified subject. O’Daniel herself is entirely absent as a
character in her own work, although she draws heavily from her immediate community and
environment in Los Angeles. I draw attention to the filmmakers’ complex, tenuous relationships
to both disability and autobiography here to suggest that these films are particularly well
positioned to complicate notions of the cinematic self and the spectatorial body in documentary
cinema.
*
Although documentary is arguably the dominant representational mode of disability
media, the connection between documentary cinema and disability remains undertheorized. The
latter third of the twentieth century, and the first decades of the twenty-first, have seen an
exciting efflorescence of disability scholarship in the humanities, as well as an increase in
disability-focused mainstream media.
191
However, disability and nonfiction media have an
intertwined history that goes back considerably further—back to the earliest days of the
cinema.
192
The scientific desire to see and, by extension, to know (and control) the human body

191
Television has proven an especially exciting frontier for this. Some recent examples include
Netflix’s reality docuseries “Deaf U,” the scripted series “Special” and “Atypical,” and network
shows such as “Speechless” (ABC) and “The Good Doctor” (ABC), although many of these
shows have received some criticism about their depictions of disabled or neurodivergent
characters.
192
See Cartwright, Screening the Body.
161
led to the development of visual technologies of which the film camera was but one among
many. Conversely, as a social and medical category, “disability” is inextricable from its
mediation and representation: in their introduction to the edited collection Documentary and
Disability (2017), Catalin Brylla and Helen Hughes suggest that “the photographic
documentation of the body has been an integral part of defining what it means to be disabled,”
and, perhaps unsurprisingly, that “the documentary genre…[has] tended towards the inhuman in
its objectifying gaze at the disabled body.”
193
Nonfiction media about disabilities has been
largely characterized by either the medical-surveillance model or the construction of
dehumanizing shock-and-awe spectacles described by disability theorists (Hevey 1992, Garland-
Thomson 1996) as the practice of “enfreakment”
194
(and its not-so-distant cousin, “inspiration
porn”
195
).
A great deal of nonfiction media about disability in the United States has been made by
able-bodied filmmakers; this is due in no small part to the ongoing lack of financial and
institutional support for disabled artists, as well as the persistent ableism across both clinical and
cinematic spaces that imagines disabled subjects as fundamentally incapable of representing their
own realities in a clear or compelling way. A number of media scholars (Norden 1995, Chivers
and Markotic 2010, Ellis and Goggin 2015) have rigorously catalogued representations of

193
Catalin Brylla and Helen Hughes, eds., Documentary and Disability (London: Palgrave
MacMillan, 2017), 2.
194
David Hevey defines “enfreakment” in part as an image-making process whereby “the
impairment of the disabled person [becomes] the mark, the target for a disavowal, a ridding, of
the existential fears and fantasies of non-disabled people.” [from “The Enfreakment of
Photography,” in The Creatures Time Forgot: Photography and Disability Imagery, London:
Routledge, 1992, 73].
195
The term “inspiration porn” was made popular by disability activist Stella Young to describe
images or narratives of disability meant to “inspire” an abled audience at the objectifying
expense of their subjects.
162
disability (and their correspondent stereotypes) across mainstream media, fictional and
otherwise. Disability rights activists and advocates have stressed the importance of more
nuanced, intersectional, and expansive (and most significantly, self-authored)
196
representations
of disability in the twenty-first century. “Life-writing,” as G. Thomas Couser has called it, has
become a powerful tool for resisting hegemonic narratives of disability.
197
My next and final
chapter will attend more closely to experiments in life-writing, to ill and disabled artists’
attempts to recount and record their own experiences and visions of the world. But the films I
look at in this chapter are not quite so easily classified, although they are, ironically, vitally
concerned with both life and writing as shifting, complex categories.
Defining disability is as uneasy and historically contingent a task as defining nonfiction
media. Both rely, at least on the surface, on a normative sense of the “objective” and move
continuously from the particular to the general, from lived experience to the social world. By
framing hearing (and hearing impairment) as a matter of positionality, perspective, and relation,
The Tuba Thieves, as I will show in the pages that follow, makes a compelling argument for
disability as something lived (subjective, in process) not had (objective, static)
198
and as a

196
Here it might be worth turning to Alisa Lebow’s work on the role of the first-person in
documentary film. She writes: “In truth, first person film goes beyond simply debunking
documentary’s claim to objectivity. In the very awkward simultaneity of being subject in and
subject of, it actually unsettles the dualism of the objective/subjective divide, rendering it
inoperative.” While The Tuba Thieves is not quite a first-person film in a conventional sense, its
complex, collaborative, and shifting modes of production and exhibition echo this move away
from the objective/subjective divide (see footnote 28 for further clarification). Alisa Lebow, ed:
The Cinema of Me : The Self and Subjectivity in First Person Documentary (New York:
Columbia University Press, 2012), 5.
197
In his essay “Body Language: Illness, Disability, and Life Writing” (Life Writing vol. 13 no.1,
2016), Couser defines lifewriting as “not the mere expression of experiences of illness and
disability but the active reclaiming of them from medicalization.”
198
Susan Wendell, Lennard Davis, Sharon Barnartt, and Rosemarie Garland-Thomson, among
others, have compellingly argued for the limitations of “disability” as an identity category and
have emphasized instead the ways that disability names a set of experiences that shift over time.
163
phenomenon that implicates all embodied subjects. I argue that The Tuba Thieves functions, in
Brylla and Hughes’ terms, as disability “counter-cinema,”
199
not because it explicitly refutes
harmful representations of disability, but because it lodges a broader critique of ableist
epistemologies and favors a dynamic, open-ended, and contingent format that stands in direct
opposition to the pathologizing and reductive gazes that have historically formed around disabled
individuals and groups. In the case of Blue, Jarman’s exploration—or even exploitation—of the
possibilities opened up by the suppression of the visual field makes clear the ways that disability
can be a site of singular creativity and play—a conduit, as I put it in my previous chapter, to
imagining life otherwise.
As experimental films that orbit around tenuous realities—lives that are about to end,
histories that only might have happened, concepts of language beyond the paradigm of
signification—Blue, The Tuba Thieves, and In My Language offer us what we might, in Jacques
Rancière’s terms, deem a (re)“distribution of the sensible”—that is, a revision of “the system of
divisions and boundaries that define, among other things, what is visible and audible within a
particular aesthetico-political regime.”
200
That aesthetico-political regime is, in this instance,
both the ableist social world in which the filmmakers find themselves and the regime of
documentary cinema itself.

199
Brylla and Hughes define disability counter-cinema as independent work that forms “an
inherent critique of past and present disability representations in mainstream films, news and
entertainment media.” Documentary and Disability, 2.
200
Jacques Rancière, The Politics of Aesthetics: The Distribution of the Sensible, trans. Gabriel
Rockhill (Continuum, 2004), 1. Rancière elaborates further on p. 12: “I call the distribution of
the sensible the system of self-evident facts of sense perception that simultaneously discloses the
existence of something in common and the delimitations that define the respective parts and
positions within it.”
164
Over the past three years, I have maintained contact with O’Daniel, who has graciously
invited me to her studio and allowed me to conduct interviews with her in person and over the
Internet. She also invited me to participate in and observe a more recent shoot for a scene in a
feature-length version of The Tuba Thieves, which is still in post-production at the time of my
writing. In our interviews, O’Daniel has emphasized her openness to ongoing variations in
presentation format
201
while noting that she hopes to eventually offer the film a more
conventional wide theatrical release; although it has primarily been exhibited in museum and
gallery spaces thus far, in 2019, the film was accepted into the Sundance Creative Producing
Labs in the documentary category.
202
Echoing Blue’s many formats, The Tuba Thieves’
components have been rearranged and exhibited in a wide variety of formats since the early
stages of the project: excerpts of various lengths have been presented and/or performed in
galleries and museums (including the Gallatin Gallery in New York, the Hammer Museum in
Los Angeles, and the Centre Pompidou in Paris), in experimental art/film spaces (such as the Los
Angeles Nomadic Division or Cincinnati’s Mini-Microcinema), and elsewhere.
I will offer close readings of several sections of The Tuba Thieves and Blue which each, in
different ways, engage with documentary as a sensory or haptic form that produces knowledge
through a confrontation with what is “not there”—an encounter that, rather than reifying
deafness as merely a failure to hear, mines absence (sonic and otherwise) for its creative and
epistemological potential. In her work on the figure of the Black femme, Kara Keeling has

201
The film’s various segments have been exhibited in different orders and combinations, as well
as in different spatial configurations (sometimes involving multiple screens) in a variety of
gallery spaces, museum spaces, and experimental exhibition spaces.
202
My own decision to read the film as a documentary began before I had learned of this recent
development; O’Daniel expressed some surprise to me that the film had been received as a
documentary, though she agrees with this characterization of it, and despite the film’s
experimental and fragmented nature, she resists calling it “video art.”
165
argued, following Gramsci, that “shared conceptions of the world are inseparable from sensory-
motor functions”;
203
in this paper, I consider what it might mean to think about certain un-shared
conceptions of the world (that is, marginalized sensory-motor experiences), as, to use Keeling’s
terminology again, key sites for producing, across difference, a “common sense” oriented
towards a more just world. These films, in their instability and playfulness, reveal the complex
triangulation of sense, absence, and knowledge that nonfiction necessarily entails. O’Daniel,
Jarman, and Baggs tell disability stories that are not about learning to know difference, but
learning to know differently.
Disability aesthetics and documentary form
The Tuba Thieves, Blue, and In My Language, in depicting (and thematizing) the sensorium
not as a mode of access to the real but, rather, as a way (among many) of interpreting it, refuse to
participate in what Trinh T. Minh-ha has called documentary’s “quest for totalized meaning.”
204

Trinh’s seminal essay reveals the ways that so-called objectivity in documentary cinema is, in
effect, merely a set of reified aesthetic conventions, “persuasive techniques”
205
that signify the
real either by attempting to erase the apparatus or foregrounding it explicitly. In either case, the
imperative to evidence necessarily obscures the practices of interpretation—political and
aesthetic—that produce evidence as such. Trinh argues that any aesthetic intervention is itself
political in that it “allows one to experience life differently…to give it ‘another sense.’”
206
A
consideration of the relationship between aesthetics and disability can help clarify the stakes of

203
Kara Keeling, The Witch’s Flight: The Cinematic, The Black Femme, and the Image of
Cmmon Sense (Durham: Duke University Press, 2007), 20.
204
Trinh T. Minh-ha, “The Totalizing Quest of Meaning,” in Michael Renov, ed., Theorizing
Documentary (Routledge: 1993): 90-107.
205
Ibid., 99.
206
Ibid., 100.
166
these films’ sensory interventions—the way they quite literally give their viewers ‘another sense’
rather than a diminished one. Aesthetically speaking, they are quite different: Blue is, of course,
a sustained blue image accompanied by a text (across all its formats); The Tuba Thieves deploys
a number of different visual styles, but to speak broadly, it is a lush, varied, and vivid visual
experience, glossy, shot on digital; and In My Language uses a lo-fi home-video format that
gives it a characteristically grainy and muted look. But what I intend here is more in line with
Rancière’s concept of aesthetics, drawn in part from Kant’s work in The Critique of Pure Reason
and Anthropology from a Pragmatic Point of View, among others. I quote Rancière here at
length:
aesthetics can be understood in a Kantian sense—re-examined perhaps by Foucault—as the
system of a priori forms determining what presents itself to sense experience. It is a
delimitation of spaces and times, of the visible and the invisible, of speech and noise, that
simultaneously determines the place and the stakes of politics as a form of experience.
Politics revolves around what is seen and what can be said about it, around who has the
ability to see and the talent to speak [emphasis mine], around the properties of spaces and the
possibilities of time.
207

Rancière is not writing within a disability studies framework, but his reference to “the ability to
see and the talent to speak” ought to be briefly taken at face value here. The privileging of
certain sensory experiences, and the epistemologies they produce, over others lies both at the
core of the Cartesian dualism that has persisted in so many corners of documentary theory and at

207
Rancière, 13.
167
the root of many acts of discrimination against disabled people.
208
If aesthetics, the shared sense
of form around which a society takes shape, is what makes sense experience possible and
knowable (and transmissible), and in so doing produces the spatial and temporal configurations
along which power is organized, then it is not just the case that our sensory experience informs
our politics—in the terms of a Bourdieusian habitus—but that what is understood as sensory is
also political. It certainly is true that sensory-motor disability is regularly socially construed as
an inability to participate fully in the political or public sphere; beyond its most obvious
manifestations (the general inaccessibility of most public spaces), I think here of the uses of
sense-motor metaphor: to be blind to something (a tragic ignorance), to fall on deaf ears (a
willful avoidance), for example, linguistic terms that reveal a belief in blindness and deafness not
just as personal limitations but as failures of and barriers to knowledge.
To return to the question of documentary: if media forms, as Rancière suggests, “appear
to bring forth…figures of community equal to themselves,”
209
and the cinema, broadly defined
as an audiovisual medium (to use Rancière’s terms, one that engages with the “properties of
spaces and the possibilities of time”), imagines (or produces) a spectator who is normatively
sighted and hearing, how might formal experimentation bring forth a different kind of
community? For subjects whose sensory field is explicitly framed as non-normative, what kinds
of political experience are possible and how can they be articulated (particularly when, as I also
explored in the previous chapter, articulation in dominant terms is not possible)? Does cinema’s

208
Lennard Davis and Douglas C. Baynton have written extensively about the historical
relationship, in the West, between the concept of citizenship, the nation, and the construction of
the normative, abled subject.
209
Rancière, 17. Here Rancière is suggesting that each historical development of form in the
west—the arrival of depicted signs, the chorus, the theater—redistributes what he calls “shared
experience,” the imagined community, as it were, upon which politics relies.
168
own manipulation and distribution of the sensible provide a pliable space for the reconsideration
of our more insidious aesthetic hierarchies?
Disability theorist Tobin Siebers’s art-historical notion of disability aesthetics offers an
important supplement to Rancière. For Siebers, aesthetics is vitally concerned with the effects of
bodies on other bodies. By “disability aesthetics,” he does not term a tendency or mode of
visuality that emerges from artwork about disability. Rather, he writes, “Disability is not…one
subject of art among others…[it] is properly speaking an aesthetic value, which is to say, it
participates in a system of knowledge that provides materials for and increases critical
consciousness about the way that some bodies make other bodies feel.”
210
Reading disability as
an aesthetic value, rather than as an identity or an experience, allows us to more clearly take an
epistemological approach to artworks about disability. If disability gives rise to its own form of
knowing, a knowing that (like all other forms of knowing, per Siebers) is rooted in the felt
exchanges between bodies, how might this map onto both Rancière’s conception of aesthetics
and documentary’s truth claims? Rancière suggests that aesthetics provide the “sensible”
backdrop for what is permissible as truth. Siebers is interested in the ways that modern art (he
writes primarily about painting and sculpture) is always concerned with the making-strange of
lived realities and, in that way, needs disability in order to exist. Much as Trinh argues that
documentary cinema’s imperative to signify the real leads it to develop a language of social
realism that, in effect, only cements existing power relations, Siebers suggests that contemporary
and experimental art’s fascination with difference, trauma, and embodiment keeps the disabled
subject firmly in the realm of the symbolic, metaphorized to the point of meaninglessness.

210
Tobin Siebers. Disability Aesthetics (University of Michigan Press, 2010), 20.
169
He writes that modern art regularly “turns to disability…as a new and powerful resource
for promoting aesthetic variation, self-transformation, and beauty…disabled bodies possess an
aura that seems to satisfy the artistic desire for new, varied, and beautiful forms of
appearance,”
211
and that, furthermore, colloquial perceptions of modern art as “sick” or “ugly”
are directly linked to fear and disgust surrounding disabled bodies.
212
He is, notably, not
convinced that the increasingly non-normative bodies depicted in contemporary art mean that
more people find disability beautiful.
213
Rather, he suggests, disability becomes a way for
modern art to invoke difference in a general sense. This invocation—this reliance on the disabled
subject as a site of creative meaning and possibility—“remains unacknowledged,” he writes, and
because of that, “disability can be used to disqualify and oppress human beings.”
214
Siebers
deems this gap—between disability’s exalted (but covered-over) status in modern art and its
continual debasement in nearly all facets of public life—“a function of the aesthetics of human
disqualification.”
215
But he locates a hopeful alternative in the work of disabled artists whose
work refuses that elision, work that sees disabled embodiment not as lacking but as possessing “a
beauty and an amplitude previously ignored.”
216
Disability in each of the films I explore here is
precisely a site of amplitude, of extension: Blue, Jarman famously says, transcends the solemn
geography of human limits. And of course, so does Jarman himself, appearing as he did to me in
the courtyard of the Getty Museum nearly twenty-five years after his death, and to innumerable

211
Siebers, 40.
212
Ibid., 40.
213
As I discussed in my introduction, disability theorists across disciplines have noted that
disability is not underrepresented in art and media—it is, rather, called upon time and again to
bear a disproportionately heavy burden of signification, to stand in for human vulnerability writ
large.
214
Siebers, 44.
215
Ibid., 44.
216
Ibid., 139.
170
others, and, fleetingly, in every blue I see: the blue that is ever-present, the blue image, the blue
after-image.
These are also portrayals of disability as a kind of multiplicity—as a site of possible
excess, rather than lack. Jarman’s unseen, disembodied narrator has not one, but four voices;
O’Daniel’s uncanny juxtapositions and historical re-imaginings open up space for a dizzying (to
hint towards a later portion of this chapter, kaleidoscopic) array of possibilities; Baggs’ film
posits the possibility of an unfinished and, indeed, unfinishable language at the periphery of our
own. That these films are also beautiful is perhaps more difficult to evidence, though I hope to
do so in the pages that follow. But what is clear is that each work is also deeply invested in
testing the particular capabilities of documentary film form for communicating their imaginative
and radical visions of disability.
***
Why documentary? Benjamin Bennett-Carpenter has suggested that Blue is a
documentary because it traffics in memory, the documentation of the past;
217
Vivian Sobchack
suggests that the film is “charged with documentary realism” in light of Jarman’s passing.
218
I
argue that Blue is legible as a documentary primarily through the absence of the signifiers that
would make it otherwise—that would connote a conventional cinematic narrative—as well as
through its connection to Jarman’s actual life and death. And I understand Blue primarily as a
document(ary) of absence, on multiple registers: the absence of sight, the absence of image, the
absence of narrative and (literally, painfully) narrator, to be sure, but equally: the myriad

217
Benjamin Bennett-Carpenter, Death in Documentaries: The Memento Mori Experience (Brill
Rodopi, 2018), 135.
218
Vivian Sobchack, “Fleshing out the Image: Phenomenology, Pedagogy, and Derek Jarman’s
Blue.” New Takes in Film-Philosophy (London: Palgrave MacMillan, 2011), 196.
171
structuring absences that constitute documentary spectatorship as both an experience and a
system of knowledge. In making-sensible those absences, Jarman’s work does more than merely
push at the limits of documentary form and remind us of cinema’s qualities of threshold, of
portal, of intermediary between worlds; it muddies the boundary between the abled and disabled
in politically fruitful ways. Jarman leads us to this impasse and, pointedly, does not offer us the
tools to cross it.
A documentary approach to The Tuba Thieves is also useful, in part due to—rather than
in spite of—the challenges posed by any attempt to categorize the film as a documentary. The
film derives its nonfiction status, at least in part, through its visible meta-stagings and allusions
to historical events that are predicated on absence: the loss of the tubas and their deep, anchoring
sound, the continued irresolution of that trivial mystery, John Cage’s silent performance and its
notably absent original score (which remains lost to this day), the San Francisco Deaf Club’s
short but fabled 18-month run. The film offers an epistemology formed around partial or
incomplete knowledges, uneasy encounters with the past and present. In so doing it evades
disability documentary’s historical connection to the purported objectivity of the medical image.
Rather than regulate, pathologize, or otherwise attempt to “know” the disabled body, the film
challenges the preconditions for that knowledge.

In the absence of light, did they hear the blast of trumpets?
In his work on queer AIDS media, Roger Hallas asks, following the work of Bill Nichols:
“When may the deliberate visual inscription of corporeal absence prove more effective in
172
sustaining that embodied experience than the visual inscription of the body?”
219
Sharon Snyder
and David Mitchell write that “the closeting of disabled people from public observation exacts a
double marginality: disability extracts one from participation while also turning that palpable
absence into the terms of one’s exoticism.”
220
Absence is a key characteristic of the disability
experience in an ableist society: perceived from the start as not-having-something, the disabled
subject is then forcibly excluded from participation in the social space.
Activists both within and outside of academia have worked for decades to distance
disability from its pervasive colloquial associations with absence, lack, deficiency, and failure—
and with good reason. Yet O’Daniel, Jarman, and Baggs all work in a key tradition of disability
art and theory, one that, rather than focusing on asserting the presence or legitimacy of the
disabled subject, emphasizes absence not only as a social space—the space of death, of the
margins
221
—but as a prerequisite for both documentary narrative and documentary form. In a
2018 interview with Anne Ellegood for BOMB magazine, cited in one of the two epigraphs to
this chapter, O’Daniel noted that when making The Tuba Thieves, she “wanted to…introduce the
experience [of being hard-of-hearing] to a hearing audience so that they conceptually and
physically have to reconcile with missing information [emphasis mine] as a productive method

219
Roger Hallas, Reframing Bodies: AIDS, Bearing Witness, and the Queer Moving Image
(Durham: Duke University Press, 2009), 16.
220
Sharon Snyder and David Mitchell, Cultural Locations of Disability (University of Chicago
Press, 2006), 158.
221
Jasbir Puar’s “Prognosis Time: Towards a Geopolitics of Affect, Debility and Capacity”
(Women & Performance: A Journal of Feminist Theory vol. 19 no. 2, 2009, 161-172) offers a
useful framework for understanding disability as both an effect and producer of social
marginalization, particularly in terms of what she terms “risk coding” as an element of identity-
formation.
173
for encountering stories.”
222
An epistemology of missing information offers us rich possibilities
for thinking about the ways knowledge is transmitted and contextualized in nonfiction film.
O’Daniel’s telling use of the term “encounter” here reveals her own understanding of her
spectator as an active participant in narrative, one who shares space with, rather than masters or
understands (or is subsumed by), the world of the film. In lieu of conventional spectatorship,
O’Daniel’s film offers, instead, a series of meetings between two (or more) bodies, predicated on
chance, mutual recognition, and co-constitutive presence. Margrit Shildrick, writing about what
she deems “an alternative ethic of relationality” that would recognize the “instability of the
disabled body…[as] simply a more acute instance of the instability of all bodies,” suggests that
“what is at stake in every encounter between self and other” is inevitably a “mix of uncertainty,
emotional and psychic investment…and sensation.”
223
Read in this way, the encounter incites an
open-endedness that enfolds all of its participants, in both body and mind, and lays bare the
limitations of ableist beliefs in the “autonomy of the singular, detached and self-complete
subject.”
224
As a woman who is hard of hearing, who is not fluent in American Sign Language
(henceforth referred to as Sign) and uses a hearing aid, O’Daniel has an experience that she has
described to me, in interviews, as definitively in-between: occupying, in turn, the deaf and
hearing worlds, largely contingent on her context and her relationships to the people around
her.
225

222
“Generative Misunderstanding: Alison O’Daniel interviewed by Anne Ellegood,” BOMB
Magazine, August 14 2018. https://bombmagazine.org/articles/generative-misunderstanding-
alison-odaniel-interviewed/
223
Margrit Shildrick, Dangerous Discourses of Disability, Subjectivity and Sexuality (London:
Palgrave MacMillan, 2009), 35.
224
Shildrick, 35.
225
The encounter produces and is ignited by a special kind of collaboration. While the process of
filmmaking is almost inevitably collaborative, the forms of collaboration practiced by O'Daniel
are nevertheless significant. For example, O’Daniel has a practice of, as she describes it,
174
Shildrick’s broader project is ultimately to highlight the ongoing epistemological
indeterminacy of the encounter and its central role in producing the subject, both conceptually
and physically.
226
The disabled subject, in particular, regularly encounters the world, and is
encountered by others, from a starting point of difference, a difference that is perceived or
imagined as bodily and is then cemented through a set of barriers to (physical, epistemological,
social, political, cultural) access. In the sphere of nonfiction cinema, encounter and access take
on yet another valence: an encounter occurs between the apparatus (as well as the filmmaker)
and the world, inaccessible as the latter may remain. The document that follows—whatever
editing or other manipulation it may undergo—is always on some level a document of that
encounter. The disability documentary is thus uniquely positioned to produce knowledge via the
encounter, an encounter which is always a kind of mismatch, a perpetual horizon. Agnieszka
Piotrowska has suggested that the documentary encounter “offers the lure of a momentary escape
from the dominant system…a kind of reverse ‘suture’”
227
wherein the subject(s) of documentary
glimpse the possibility of a form of existence outside of the structures that shape their lived
reality. If we take seriously the social model of disability, we can begin to see why this un-
suturing is particularly attractive.

“working backwards,” wherein she asked three composers, Steve Roden, Christine Sun Kim, and
Ethan Frederick Greene (to whom she had given short, abstract lists for inspiration, whose
contents ranged from “love scene” to proper names to architectural structures) to write scores for
The Tuba Thieves prior to the start of screenwriting or shooting. These encounters—and sounds
produced in the service of an image that does not yet exist and has not yet been imagined—are
not inherently productive encounters, not organized towards the construction of a coherent
whole. Instead, they open up and complicate the space of the present.
226
Sally Chivers and Nicole Markotic, in their introduction to The Problem Body: Projecting
Disability on Film (Columbus: Ohio State University Press, 2010), describe disability as a status
that is necessarily “both discursive and material” (9).
227
Agnieszka Piotrowska, Psychoanalysis and Ethics in Documentary Film (London: Routledge,
2013), 90.
175
The significance of the encounter—embodied and metaphorical—is even more explicit when
it comes to Blue. The film’s flatness—its insistently present and unyielding surface—means that,
as spectators, we become acutely aware of its effects on us, our own drifting away from it and
back to it as the film plays. The color blue has many associations, but perhaps its two most
colloquially pervasive are sea and sky, vast and distant; in bringing these faraway things into an
explicitly shallow, two-dimensional visual realm, Jarman represents blindness not as a blue
screen but as a reconfiguration of the spatial, a slow erosion of distance (including the distance
between self and other). At the same time, however, we must not imagine that there is no space
at play in Blue; leaving aside the image (which, in its very flatness, would seem, unlike most
narrative cinema, to announce primarily and continuously its concrete physical distance from the
spectator, there being no other depth or spatial relationship to be found), the layering and
manipulation of sounds, voices, and echoes throughout the film’s duration do indeed create
oscillating waves of far and near, although their source and direction remain unknown and
unknowable, unseen and invisible. In her work on affect, Ranjana Khanna suggests that Blue’s
blue screen functions as a kind of interface that, in its refusal to allow us the fantasy of
projection and identification, in its flatness and untouchability, opens up the possibility of “ethics
as an opening to the other,”
228
an ethical relation formed through (a necessarily risky) encounter.
(In the context of AIDS media, the notion of the risky and transformative encounter carries
special weight.) Khanna argues that the film’s faceless/bodiless autobiography enacts “a giving
presence momentarily to [Jarman], but demonstrated through the technology and textuality of
doing so,”
229
allowing us to understand the mediated, multiple, and incomplete nature of the self.

228
Ranjana Khanna, “Touching, Unbelonging, and the Absence of Affect,” Feminist Theory no
13. vol 2 (2012): 221.
229
Khanna, 221.
176
She further suggests that “all somatic and physical manifestations, including senses…[are]
something felt…an auto-affection of sorts, an implicit questioning of self-sameness.”
230
An
explicit engagement with the sensorium, therefore, leads us to encounter not the coherent or
primary self but the self made strange, which in turn makes it possible to engage alterity not as
the inalienable quality of the other but as what is common to self and other.
Jarman and O’Daniel’s films require a capacious phenomenological approach, one that
recognizes the ways that discontinuity and absence are also key elements of embodiment and
lived experience. This allows us, ultimately, to understand disability on a spectrum, as one form
of diversity and difference among many, produced and sustained through environment and
encounter (that is, through sense-making and world-making), rather than as an aberration or an
individual failing. In Cultural Locations of Disability (2006), one of the first of very few
disability-studies texts to engage with documentary theory, Sharon Snyder and David Mitchell
make a provocative connection between the continuity editing associated with mainstream
American fiction film and disability’s mediated connection to both spectacle and the formation
of knowledge.
231
Continuity, in nonfiction as well as fiction, actively produces and sustains
forms of looking and knowing that have historically marginalized the disabled subject on screen.
Disability disrupts fantasies, onscreen or otherwise, of a singular, normative, and indeed
continuous form of embodiment, communication, movement, perception; it blurs the boundaries
between the human body, its environment, and the practices of looking and speaking that shape
it. Alison Kafer, drawing on the work of Irv Zola and Carol Gill, who have written about “crip
time,” describes the “reorientation to time” that is frequently a part of disabled experience; crip

230
Ibid., 217.
231
Snyder and Mitchell 2006, 157.
177
time, she asserts, “poses a challenge to normative and normalizing expectations of pace.”
232
If a
contemporary disability perspective in general is less invested in representation than it is in
“decentering the physically and cognitively ‘normal’ character, the ‘normal’ viewer…and so
on,”
233
a theory of disability cinema must also take into account the implications of continuity in
the formation of the subject, both onscreen and off.
I suggested earlier that Blue can be read as a documentary in part because of the absence of
material that would make it otherwise. But it is also worth emphasizing that Blue has
documentary qualities, as does The Tuba Thieves, because it engages in a form of knowledge-
production that gestures toward the world beyond it. Vivian Sobchack’s phenomenology of
nonfiction film offers a key alternative to the fiction/nonfiction binary that is useful here.
Following the work of Jean-Pierre Meunier, she suggests that while the fiction film occurs within
an enclosed space-time, marked as distinct from the spectator’s world but whose “reality” is not
necessarily up for debate, and its counterpoint, the “home-movie” or “film-souvenir,” presents its
viewers (who are often its makers) with a highly specific and identifiable world (my family, my
cat, my house), the documentary sits roughly in the middle, offering us access to knowledge that
is (largely) impersonal: the events of history, the inner lives of other people—all of the truths
that pulse around (and make possible) our own, believed from a distance, felt beneath (and
instrumental to) the surfaces of lived experience. This distance or beneath-ness, too, is
experienced as a structuring absence: “the documentary,” she writes, “entails not only our
existential and cultural knowledge, but also our partial lack of it—a lack that modifies the nature
of our identification with the image…[our understanding of, or familiarity with, what we see on

232
Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 75.
233
Elizabeth Ellcessor and Bill Kirkpatrick, “Studying Disability for a Better Cinema and Media
Studies,” Journal of Cinema and Media Studies, vol. 58 no. 4 (Summer 2019): 140.
178
screen is] always in a way qualified by our lack of personal knowledge.”
234
For Sobchack, these
three categories (fiction, souvenir, documentary) are themselves shifting, subjective, and rooted
in the encounter between the film and the spectator.
Hito Steyerl has similarly suggested that this paradox, of recognition predicated on a lack of
knowledge, is at the heart of both documentary images and documentary theory. Of the news
image, for example, she writes: “the closer to reality we get, the less intelligible it becomes…the
perpetual doubt, the nagging insecurity—whether what we see is ‘true’, ’real’, ’factual’ and so
on…this uncertainty is not some shameful lack, which has to be hidden, but instead constitutes
the core quality of contemporary documentary modes as such.”
235
For Steyerl, for an image to be
read as non-fiction, it must inherently be doubtable, precisely because it is in the nature of non-
fiction to confuse, to demand interpretation and translation (much like the medical image), to be
connected to the larger fabrics of space and time and therefore to be only accessible in
incomplete glimpses, to create a distance between itself and its spectator.
*
O’Daniel describes herself as a filmmaker and sculptor, and spatial configurations are key to
her work. When I first saw an hour of The Tuba Thieves on display at the Hammer Museum’s
Made in L.A. exhibition in 2018, two of the three screens the film required were on one wall and
one was on the wall opposite, making it impossible to watch all three at once.

234
Vivian Sobchack, “Toward a Phenomenology of Nonfiction Film Experience,” in Michael
Renov and Jane Gaines, eds., Collecting Visible Evidence (University of Minnesota Press, 1999),
243.
235
Hito Steyerl, “Documentary Uncertainty,” Re-visiones, 2011 http://re-
visiones.net/anteriores/spip.php%3Farticle37.html
179

Figure 66. The Tuba Thieves at the Hammer Museum, Los Angeles

O’Daniel’s use of closed captioning and Sign, as well as her use of exhibition space, works
pointedly to simultaneously invoke accessibility and inaccessibility. In this work and others,
O’Daniel sometimes elects not to closed-caption the scenes of her characters using Sign; she
always, however, provides captions for all of the sounds on screen that do not have visible
sources. In this way, she clearly and expressly makes her work accessible to a deaf audience over
a hearing one. At the same time, she makes intense and expressive use of musical score, and
takes a playful approach to her closed captions, allowing them to drift into poetic reverie. There
is no “right audience” for this work. Any spectator, be they deaf, hard-of-hearing, or hearing, is
at least occasionally excluded from the “full experience” of the film.
Before I explore O’Daniel’s work in greater detail, I should also note some of the
specificities of hearing impairment and deaf culture in particular. While some hearing-impaired
individuals make the choice to identify as disabled and others do not, a number of deaf activists
180
have lobbied extensively for recognition as a cultural and linguistic minority.
236
As Kafer has
noted, the “linguistic-cultural model of deafness shares a key assumption of the social model of
disability—namely, that it is society’s interpretations of and responses to bodily and sensory
variations that are the problem, not the variations themselves.”
237
Sensory-motor impairments
provide particularly strong evidence for the usefulness of a social model of disability, a model
often credited to the work of Michael Oliver and Tom Shakespeare. These scholars and others
have insisted on a distinction between impairment—a personal and specific condition
experienced within a physical body—and disability, which is structural and public, an
impediment to access that is produced by political, cultural, social and architectural norms which
are themselves continuously subject to change.
238
That is, in this view, disability is not innate or
specific to a body; to be disabled
239
is to be acted upon by ableist forces from without, forces that
touch all subjects, impaired or otherwise, and interpolate all subjects into a single normative
ideal of embodiment. This model insists that disability is an experience, not an identity;
suffering, when it is shared across community, is a consequence of ableism, not of one’s
individual body.

236
Harlan Lane provides a useful overview of this history in “Construction of Deafness,” in The
Disability Studies Reader, 2
nd
edition, ed. Lennard J. Davis (New York: Routledge, 2006), 79-92.
237
Kafer, 75.
238
See: Tom Shakespeare, “The Social Model of Disability,” in The Disability Studies Reader,
197-204. Elizabeth Ellcessor has more recently offered a summative definition of the social
model, writing: “scholars in disability studies understand disability as a condition of difference
that has been produced through discourse, by the built environment, and through social
relations.” In Ellcessor and Kirkpatrick, 140.
239
This phrasing is a strategic, syntactical move away from person-first language (in this case,
“people with disabilities”). Person-first language was introduced by activists who wanted to
resist the dehumanizing and reductive language that identified the disabled subject as the
disability itself (e.g. “the cripple”); advocates of the phrase “disabled people” argue that person-
first language, while it was historically useful, did not do enough to reveal the degree to which
disability is located, reinforced, and produced outside of the individual.
181
The social model, though imperfect,
240
helps highlight the ways deaf communities are
marginalized without detracting from this vision of deafness as a culture unto itself. Carol
Padden and Tom Humphries describe the world of deafness as a world of meaning with “a
different alignment, toward a different center” than that of the hearing community.
241
H-Dirksen
L. Bauman urges readers to understand deaf culture as one “flourishing beyond the reaches of
logocentrism.”
242
The Tuba Thieves does not presume a hearing spectator; it documents a wide
range of disparate experiences, each of which, in different ways, works towards a “different
center” of nonfiction epistemology. Sensory disability, figured as a non-normative or alternate
(rather than diminished, or otherwise inferior) way of experiencing, understanding, and
interacting with the world, offers its own rich aesthetic possibilities;
243
it also makes possible
new forms of encounter with the nonfiction media object.
The first section of her film I read here, entitled “The Kaleidoscopic Window,” contains
arguably the film’s most overt engagement with deafness and, more specifically, the semiotics of

240
Tobin Siebers summarizes this turn thus: “Disability scholars have begun to insist that strong
constructionism either fails to account for the difficult physical realities faced by people with
disabilities or presents their body in ways that are conventional, conformist, and unrecognizable
to them. These include the habits of privileging performativity over corporeality, favoring
pleasure to pain, and describing social success in terms of intellectual achievement, bodily
adaptability, and active political participation. The disabled body seems difficult for the theory of
social construction to absorb: disability is at once its best example and a significant
counterexample.” Tobin Siebers, “Disability in Theory: From Social Constructionism to the New
Realism of the Body,” American Literary History, vol. 13 no. 4 (2001): 740.
241
Carol Padden and Tom Humphries, “Deaf People: A Different Center,” in The Disability
Studies Reader, 332.
242
H-Dirksen L. Bauman, “Toward a Poetics of Vision, Space, and the Body,” in The Disability
Studies Reader, 357.
243
Kafer considers the ways utopic visions of future worlds have tended to imagine an
eradication of disability, without questioning the eugenicist impulses this belies; she warns that
“to eliminate disability is to eliminate the possibility of discovering alternative ways of being in
the world, to foreclose the possibility of recognizing and valuing our interdependence.” Feminist,
Queer, Crip, 83.
182
Sign. Against a black backdrop and filmed in black and white, deaf sound artist Christine Sun
Kim tells, in Sign, a brief story about two of the film’s characters, Nyke and Nature Boy, in
direct address to the camera.

Figure 67. From "The Kaleidoscopic Window”

Throughout, closed captions accompany the movements of Kim’s hands, torso, and face.
The very first caption we see on screen points us to an accompanying audio track, which we are
informed is the voice of sound artist Steve Roden. His voice then accompanies us through Kim’s
performance. He translates her signing into spoken English. The effect, however, is jarring,
because unlike the closed captions, which share a syntax and grammar with English, his
translation is literal, hewing to the grammatical structure of Sign. He translates each gesture into
its corresponding word; the outcome shares more with poetry than prose. This is a reversal of
Sign’s most visible function in the hearing world—as a form of interpretation or translation
during a live event, such as a news broadcast or theatrical performance. Here, however, it is
spoken English, not Sign, which must attempt to adhere to the structure and rhythm of another
language.
183
To illustrate: Sign that is captioned as “The sun is going down. A small cabin sits perched in
the woods” is spoken by Roden aloud, based on Kim’s signs, as “sun / down / dark woods / trail /
far / point to small / cute cabin.”

Figure 68. From “The Kaleidoscopic Window”

This continues throughout the scene. The effect is one of triangulation, the sign-signifier-
signified paradigm animated anew: somewhere between the act of Sign, the written text, and the
spoken word, the story (and the film) itself unfolds. O’Daniel effectively untethers speech, text,
and sound from one another in this scene. I am made immediately aware that my experience of
this is deeply informed by my being a hearing speaker of English who is not quite fluent in
Sign.
244
My reading, listening, and watching feel braided to one another: close, sharing a shape,
and yet never quite forming a unified whole. In their triangulation, these language systems each
come up clearly against their own limits, taking shape through what each clearly lacks. Bauman
has suggested that because the signer in Sign gestures facing away from her own body, “there is

244
This is a fact O’Daniel disclosed to me in interviews, and she has mentioned it in her
correspondence with other interviewers as well.
184
always a trace of nonpresence in the system of signing.”
245
This, he argues, stands in direct
opposition to the kinds of presence presumed by “the voice” in a phonocentric, logocentric, and
normatively ableist society.
The politics of ASL in public, and in mediation, are complex. Elizabeth Ellcessor has
written about the ways ASL interpretation in the public sphere lays bare the paradoxes inherent
in a visibility framework: while the figure of the interpreter “poses a challenge to the invisibility
of access and marginalization of disability…[and] shows alternative arrangements of language,
bodies, mediated communication, and public engagement,”
246
the interpreter can also be
perceived by hearing audiences as a kind of performer, one whose capacity for spectacle and, by
extension, for public consumption “as entertainment, with its attendant racial and gendered
politics of representation”
247
only reify existing hierarchies. If visibility “is often figured as a
prerequisite to political voice,”
248
if, as Rancière reminds us, its parameters are determined by
the political, it can also become, all too easily, a conduit for surveillance, gawking,
objectification.
249
In the context of “The Kaleidoscopic Window,” the fact that Kim is the only
visible performer/speaker, coupled with the fact that none of the three language-systems present
ever establishes supremacy, dislodges Sign from associations with subordination (to spoken
English) without having to abandon the cinematic beauty of its performative elements. Ellcessor
also notes translation’s fluency bias, in which, she writes, “the seamlessness of the translation –

245
Bauman, The Disability Studies Reader, 357.
246
Elizabeth Ellcessor, “Is There a Sign for That?: Media, American Sign Language
Interpretation, and the Paradox of Visibility,” Perspectives: Studies in Translatology, vol. 23 no.
4 (2015): 587.
247
Elcessor, “Is There A Sign for That?”, 594.
248
Ibid., 590.
249
Rosemarie Garland-Thomson’s Staring: How We Look (Oxford University Press, 2009) offers
a comprehensive breakdown of the relationship of disability to the gaze.
185
its similarity to native language, its invisibility – is [considered] a mark of quality.”
250
“The
Kaleidoscopic Window” resists this seamlessness; it offers Piotrowska’s “reverse suture,” lingers
instead on the unbridgeable gap.
Deaf activists have long pushed back against popular misconceptions of Sign that
imagine it as primarily a form of translation and, by extension, an impoverished or
underdeveloped language. Sign, they argue, is “not simply a collection of iconic gestures but a
linguistic system capable of all the symbolic, abstract content of spoken languages.”
251
As such,
its relationship to film and the moving image ought to be taken as seriously as scholars have
taken the relationship between other written/spoken languages and visual culture
Christopher B. Krentz cites the linguist William Stokoe’s assertion that Sign shares
certain characteristics with cinema:
252
“The essence of sign language is to cut from a normal
view to a close-up to a distant shot to a close-up again, and so on…exactly as a movie editor
works.... [Signing is] arranged more like edited film than like written narration.”
253
Sign is not
only a language that, like any other, can be mediated; in both its performance and its poetics, it is
distinctly cinematic. As an embodied and gestural language system,
254
Sign is inherently spatial
and perspectival; it is a medium of the moving image.
255
Unlike other non-cinematic moving

250
Ellcessor, “Is There A Sign for That?”, 589.
251
H-Dirksen L. Bauman, ed., Signing the Body Poetic: Essays on American Sign Language
Literature (University of California Press, 2006), 110.
252
William Stokoe made this claim in a 1989 interview with Oliver Sacks.
253
Stokoe quoted in Christopher B. Krentz, “The Camera as Printing Press: How Film Has
Influenced ASL Literature,” in Bauman, Nelson, and Rose, Signing the Body Poetic, 64.
254
Bauman notes, tracing a further connection between Sign and cinema: “ASL is at all times
composed of lines, invisible and kinetic; they are the paths that etch out a particular ‘direction of
course or movement.’ In fact, one could say that signed discourse is composed from an
assemblage of lines drawn in space through the body’s movements.” (Signing the Body Poetic,
104).
255
In “Notes on Gesture,” Giorgio Agamben, following Deleuze, argues that gesture, rather than
image, is the “element of the cinema.” Agamben’s work on gesture has been taken up recently by
186
image media, like dance, Sign operates on the register of a language-system, with a codified set
of signs and grammatical rules. Syntactically, because Sign does not (as seen in the example
above) deploy auxiliary verbs in the same way as English, its production of meaning warrants an
analogy to montage. For me, as a hearing listener, even the small silences between Roden’s
halting, slow words are striking: they attune me both to the fluid movements of Kim’s signing
body, which is constantly in motion throughout the scene, and to the work I, as a reader and
listener, must do to connect each of his words—work that makes the more readily legible (to me)
English captioning at the bottom of the screen feel alien, insufficient, and limiting. The “full
sentences” offered by the captions are suddenly much less interesting; more significantly, they
feel more fictive, that is, more immediately narrative and, consequently, less present. Here, a
brief turn to earlier theories of film semiotics is useful for unpacking the relationship between
s/Sign, narrative, and representations of reality.
In the early parts of Film Language: A Semiotics of the Cinema, Christian Metz anticipates
Vivian Sobchack’s work on the phenomenology of the nonfiction film, to which I referred earlier
in this chapter: narrative, he suggests, offers us a “closed sequence, a temporal sequence”
256
that,
by virtue of its existence as narrative, “[renders] the recited object unreal.” That is, narrative
places the “recited object” (whatsoever its truth-value may be) at a discursive and temporal
remove from both speaker and listener in whatever shared present they occupy; this
“margin…[that] separates it from the fullness of the here and now,” for Metz, is what allows an

a number of film theorists, perhaps most notably Nicholas Chare and Liz Watkins. Considered in
terms of a gestural language like Sign, and alongside Metz’s work on the language-system and
reality as it is invoked in this essay, Agamben’s assertion takes on new meaning for Deaf
documentary cinema. See: Means Without Ends: Notes on Politics, trans. Vincenzo Binetti and
Cesare Casarino (Minneapolis: University of Minnesota Press, 2000), 42-60.
256
Christian Metz, Film Language: A Semiotics of the Cinema, trans. Michael Taylor (University
of Chicago Press, 1974), 21.
187
account to be legible precisely as an account, rather than an experience. “The Kaleidoscopic
Window” is a narrative of narration; it expands, and resides in, this margin between here and
elsewhere. O’Daniel’s camera in this segment is largely still. Kim faces the camera directly.
Sitting in the exhibition space, with screens both in front of me and behind me, I am acutely
aware, even before this section begins, of what I am missing at all times. The story being told is,
and is not, the one being represented. The recited object is unreal; its recitation, though equally
mediated, feels closer, truer.
I do not mean to suggest that this kind of distancing is inherent to Sign in any way. Rather, in
this scene O’Daniel (along with Sun Kim and Roden) exploits Sign’s cinematic properties in a
way that is emblematic of her broader interrogations of the nonfictive. The section’s title also
provides a useful metaphor for the cinematic effect she produces in this segment: the
kaleidoscope creates its patterns by reflecting reflections back onto one another, producing
images that are at once directly predicated on the object being reflected and also bear no
immediate resemblance to it. “The Kaleidoscopic Window” has no originary, “correct” source
text beyond the performance being staged and filmed. I think here of Trinh’s critique of
documentary theory and filmmaking in which interpretation “is not viewed as constituting the
very process of documenting and making information accessible; it is thought, instead, to be the
margin all around an untouched given center.”
257
In this scene, which features nothing but the
interplay of interpretations, O’Daniel reveals the fallacy of the untouched center, or perhaps the
emptiness of it. Trinh continues: “meaning can be political only when it cannot be easily

257
Trinh, 98. For Trinh, as I will explore further in the final section of this chapter, the idea of an
unmediated or a priori real to be located is not only incorrect but politically dangerous, because
it leads the filmmaker in search of subjects whose perceived authenticity is a result of their
seeming voicelessness; this concept is explored in far greater detail in Pooja Rangan’s recent
book Immediations, which I will also turn to briefly later.
188
stabilized and when it does not rely on any single source of authority, but, rather, empties it, or
decentralizes it.”
258
This is quite literally the case in this sequence (as in Blue’s multivocal
narration as well as its textual interweaving of recorded memory, fact (so-called), and fantasy); a
story is told, in the end, but in its telling becomes dispersed, mutable.
What makes O’Daniel’s political intervention significant for thinking sensory-motor
disability is not just its diegetic use of Sign; it is also its destabilizing invocation of the
spectatorial body. The “narrative content” of “The Kaleidoscopic Window” (the story of Nyke
and Nature Boy) is insistently offscreen in a way that brings us, as viewers, perpetually back to
the unfolding, ever-shifting present, and to an acute awareness of both our spectatorial positions
and our spectatorial enmeshment: the ways that we are both sensing and making sense of the film
object, or what Sobchack has described as the way “the spectator and the film…imaginatively
reside in each other—even as they are both discretely embodied and uniquely situated.”
259
The
real, in this case, is produced by a direct confrontation with the limits of both language and
image. In a disability context, this kind of mutuality, understood as both embodied and imagined,
has straightforward political implications: it emphasizes our interconnectedness without
imagining or requiring a sense of sameness.
260
The abled viewer is called in, reminded, in this
moment, of their own ongoing participation in the production of ableism and their responsibility
to work against it.

258
Ibid., 100.
259
See: Vivian Sobchack, The Address of the Eye: A Phenomenology of Film Experience
(Princeton University Press, 1992), 261.
260
I have written elsewhere about the ways that this kind of coalitional thinking is a key element
of disability theory and activism: in lieu of shared experiences of embodiment and oppression,
disability activists tend to focus on shared dreams for liberation.
189
If The Tuba Thieves is concerned with missing information, Blue asks us what information
itself is missing, what eludes the sphere of the knowable, what cannot be accounted for. Much of
the film’s script is comprised of diaristic renderings of Jarman’s experiences: he and others
narrate detailed accounts of the day-to-day, the bizarre blend of melodrama and tedium that
characterizes the endless hours in doctor’s offices, waiting rooms, hospitals. That tedium bleeds,
too, into opaque torrents of medical information, as in one moment when the narrator archly
describes Jarman’s medication:
The side effects of DHPG, the drug for which I have to come into hospital to be dripped twice a
day, are: Low white blood cell count, increased risk of infection, low platelet count which may
increase the risk of bleeding, low red blood cell count (anaemia), fever, rush, abnormal liver
function, chills, swelling of the body (oedema), infections, malaise, irregular heart beat, high
blood pressure (hypertension), low blood pressure (hypotension), abnormal thoughts or dreams,
loss of balance (ataxia), come, confusion, dizziness, headache, nervousness, damage to nerves
(peristhecia), psychosis, sleepiness (somnolence), shaking, nausea, vomiting, loss of appetite
(anorexia), diarrhoea, bleeding from the stomach or intestine (intestinal haemorrhage),
abdominal pain, increased number of one type of white blood cell, low blood sugar, shortness of
breath, hair loss (alopecia), itching (pruritus), hives, blood in the urine, abnormal kidney
functions, increased blood urea, redness (inflammation), pain or irritation (phlebitis).

Retinal detachments have been observed in patients both before and after initiation of therapy.
The drug has caused decreased sperm production in animals and may cause infertility in
humans, and birth defects in animals. Although there is no information in human studies, it
should be considered a potential carcinogen since it causes tumours in animals.
190

If you are concerned about any of the above side-effects or if you would like any further
information, please ask your doctor.

It takes little time for this language to dissolve into near-meaninglessness, each symptom
evoking its own world of possible sensation and immediately swallowed up by the next, attached
to a Latinate word that both legitimizes the experience as medical and alienates the listener
further; concurrently, each listed symptom becomes increasingly severe, effectively blurring the
line between the so-called “side effect” and the disease itself. Retinal detachments, a cause of
Jarman’s blindness, become but one of many outcomes of treatment. Several times in the film,
Jarman addresses the audience, much as he himself is addressed under the glare of the doctor’s
opthalmoscope: Look up. Look down. Look left. Look right. These moments of spatial and
subjective orientation—the eye exam’s imperative to look in order to be properly (clinically)
seen—are transferred from Jarman to us, in our own half-focused gaze at the blue rectangle
before us. The sheer volume of the side effects listed, and the wry direct address to us from
beyond the grave (and ventriloquizing, for a moment, the position of medical authority Jarman
views with such skepticism), together evoke a logic of non-sense: the loss of the sense (sight),
the subsequent loss of a stable position in space, and finally the disintegration of that space and
its boundaries.
To return again to Trinh here: she suggests that there are ways to work outside the paradigm
in which the documentarian (typically from a site of privilege) goes in search of “the true
referent that lies out there in nature, in the dark, waiting patiently to be unveiled and
191
deciphered.”
261
This is an apt descriptor for the traditional disability documentary as described
by Brylla and Hughes, and for the medical image writ large—an authoritative gaze that imagines
both the body’s interior and bodily difference as stores of hidden knowledge to be read and
understood from the outside. The corrective move here is not one of looking more deeply for the,
somehow, truer truth; it is about refusing the suggestion of totality. And how might this be
accomplished? Perhaps by, she writes, via “the play of nonsense (which is not mere
meaninglessness) upon meaning,”
262
Lingering in the space of nonsense, of the inexplicable, of
the magical and irrational makes room for a kind of documentary practice, a kind of
documentation, that makes new visions of the world possible.

Acts of imagination: it’s a film about you
To speak of “new visions of the world” is necessarily to speak of the imagination, and to
speak of the imagination, I will argue here, is at least in part to speak of and in the space of
metaphor. Jarman, in one of my two epigraphs to this chapter, writes that images hinder the
imagination by “begging a narrative.” Sobchack posits that if Blue contained specific visual
representations,
“not only would the viewer/listener’s intense sense of their lived-body’s material immanence
(whether experienced negatively and/or positively) be greatly diminished but also diminished
would be the film's invitation (whether accepted or not) to transcendence — to perceptive
and expressive acts of imagination, reverie, and thought that, in dynamic concert with the
blue screen and Jarman’s own voiced imagination, reverie, and thought, are rooted in our
lived-body’s immanence but also exceed its corporeal limits.”
263

261
Trinh, 107.
262
Ibid., 107.
263
Sobchack, “Fleshing Out the Image,” 202.
192
Sobchack’s argument helps clarify the way I read all three films in this chapter: as cinematic acts
of imagination that do not tell us about disability but instead manifest visions of the world from a
subject position that takes nothing for granted, that is radically open.
Disability’s relationship to the image and the imagination is not secondary, but primary.
Images, medical and cultural, of the body produce the norms against which forms of bodily
difference are measured and understood. Tobin Siebers writes that “bodily differences become
images—that is, acquire the power of representation—when they are construed as
disabilities.”
264
The image here refers to visual representations but also to imagination. Tanya
Titchkosky suggests that “disability is always formed from an imaginative relation between us,
between culture and bodies, minds, senses…the body [is] an imaginative structure.”
265
Gabriele
Griffin, who writes extensively about Blue in her 2000 book Representations of HIV/AIDS:
Visibility Blue/s, notes that HIV/AIDS is itself a visually under-determined” illness,
266
that is,
one whose visual formations, whose markers of visible evidence, so to speak, are themselves
ambiguous and unstable; symptoms are variable and often invisible, only some (KS lesions, for
example) rising to the surface of the skin, and due to the nature of the syndrome it is equally
difficult to provide a kind of diagrammatic imaging that corresponds universally to the inner
workings of the AIDS patient’s body. For Griffin, Blue’s refusal to “show us” HIV in the form of
a visibly ailing body or a medical image is Jarman’s way of gesturing towards HIV’s own
invisibility (both in this embodied sense and in the larger, social sense). And Jarman does
address this social invisibility, several times, in the film’s text: How are we perceived, if we are

264
Siebers, 133.
265
Tanya Titchkosky, “Disability images and the art of theorizing normality,” International
Journal of Qualitative Studies in Education, Vol. 22 No. 1 (2009), 78.
266
Gabriele Griffin, Representations of HIV and AIDS: Visibility Blue/s (Manchester University
Press, 2000), 8.
193
perceived at all? He asks. For the most part, we are invisible…if the doors of perception were
cleansed then everything would be seen as it is. Jarman characteristically offers no further
instructions for this cleansing, beyond, perhaps, the film itself. I want to take a slightly different
route, here, and consider the ways that the “visually under-determined” might allow us to think
about the role of the imagination in the construction and experience of both illness and disability,
and to see these films as experiments also in the cinematic imagination.
Susan Sontag writes of the dual temporality engendered by AIDS, and by diagnosis more
broadly: “There is what is happening now. And there is what it portends: the imminent, but not
yet actual, and not really graspable, disaster. Two kinds of disaster, actually. And a gap between
them, in which the imagination flounders.”
267
Blue and The Tuba Thieves dwell precisely in this
imaginative gap, this subjunctive space between what is and what might be, what was and what
might have been. Blue does so both in its form—in narration and sound without corresponding
image, which explicitly demands imagining from its viewer—and in content (and I am struck by
how little has been made of the content of Blue in the seemingly endless amount of scholarship
on it). Jarman and his co-narrators tell us, over and over, about the process of imagining: for
example, here is Jarman describing the process of having his infected retina photographed at the
doctor’s office:
The camera flash / atomic bright / photos / the CMV / a green moon, then the world turns
magenta
My retina is a distant planet / a red Mars / from a Boy’s Own comic
With yellow infection bubbling at the corner
I said: this looks like a planet.
The doctor says — Oh, I think it looks like a pizza.

267
Sontag, 90.
194
Or we might look at one of the text’s many flights of fancy, jumping (in a way that is resonant
with so much of Jarman’s previous work) across and through time:
Marco Polo stops and sits on a lapis throne by the River Oxus while he is ministered to by the
descendants of Alexander the Great. The caravan approaches, blue canvasses fluttering in the
wind. Blue people from over the sea ― ultramarine ―have come to collect the lapis with its
flecks of gold.

I will return, from a slightly different perspective, to the question of the imagination, AIDS, and
death in my discussion of Silverlake Life in this text’s fourth chapter. But what I am interested in
here is the way that within this film that so directly already asks its viewer to see, in the mind’s
eye, that which is not provided on the screen, Jarman appears to take repeated pleasure (or we
might say refuge?) in poetry, in metaphor and in imagined corners of history, in references to
images that are unstable and untrue by design. The world changes color for an instant; one
person sees a pizza where the other sees a planet; the Marco Polo that Jarman imagines is both
the same one and not the same one that I, listening, call forth.
In The Tuba Thieves, imagination is similarly key to the three segments I highlight in this
chapter. In “The Kaleidoscopic Window,” the section of the film that bears the most in common
formally with Blue, the narration also gestured towards the unseen, the offscreen; the section I
am about to examine more closely is among the film’s most fantastical, layering human voices
over the subtle quivering of plants in a way that suggests a kind of communication; and the third
sequence, a historical reenactment, imagines both what did happen and what might have
happened, at once.
And in these exercises of the imagination, we can begin to see something like metaphor
at work; a comparison between the present and the possible, each given equal weight, each
195
endlessly transforming the other. Vivian Sobchack argues that “Blue is not image-less; it is
figure-less.”
268
Perhaps it is figureless, but it is insistently figurative. Early in Blue, the narrator
laments: all that concerns life or death is all transacting and at work within me. What is a
transaction if not a dynamic process of encounter and exchange? Blue and The Tuba Thieves
occupy a metaphorical space, not in the sense of comparison or symbolism, but as enclosed but
dynamic sites of imaginative encounter, enacted upon and through a body that is not present but
whose absence instantiates them. Why, thus understood, are metaphor and imagination so key to
understanding these films, and to thinking about sensory-motor disability? Because in their
explicit references to the imagination, to the sites where imagination becomes necessary in the
absence of the senses, these films provide disability’s rejoinder to documentary knowledge, a
rejoinder that is not only borne from a clear political need for recognition and personhood but
also a rejoinder to the terms of that knowledge that I am not sure any other self-reflexive or
experimental documentaries, in the many decades since Nanook, have accomplished so well.
I take this detour back one step further, to Kant, invoked in the Rancière passage I
invoked earlier, whose work on the imagination can help us clarify the connection to media,
image, the senses. As documents of the experience of sensory disability, these films, I argue,
complicate Kant’s understanding of the imagination as a kind of media form, one predicated on
absence.
The status and significance of the imagination recurs across Kant’s oeuvre. In
Anthropology from a Pragmatic Point of View, Kant describes the imagination as “a faculty of
intuition without the presence of the object.” It is either “productive…which thus precedes
experience,” or “reproductive…[bringing] back to mind an empirical intuition that it had

268
Sobchack, “Fleshing Out the Image,” 197.
196
previously.”
269
That is, imagination for Kant calls into presence the object or event which is not
actually there, either in advance of it—essentially, by making something up—or after the fact, in
the space of memory. Kant argues in The Critique of Pure Reason that the imagination (and here
he is specifically arguing against the empiricist view of his time) is a “necessary ingredient of
perception itself”
270
because the senses do not, in and of themselves, give us the whole picture.
When we see, for example, we see beyond the immediately visible. What we see is not just seen
but perceived, which is to say, apprehended or made sense of, and thus requires the imagination:
I imagine that the side of an object I cannot see is there, for example, or I understand what an
object is because I have seen it before. It is through imagining, then, that sensory experience
becomes knowable. And this is because sensory experience is always, necessarily, lacking. The
whole is never present. To return to Rancière, then: the distribution of the sensible is always
already implicated in a system of mediation and representation.
Kant suggests that the imagination is the grounding of all experience, because it allows us not
only to apprehend the sensible but to connect and reproduce our perceptions across space and
time. Indeed, he argues, apprehension and reproduction are inseparable from one another in the
mind; they are what lends the perceptible world its apparent continuity.
“If cinnabar were now red, now black, now light, now heavy, if a human being were
now changed into this animal shape, now into that one …if one and the same thing
were sometimes called this, sometimes that, without the governance of a certain rule to
which the appearances are already subjected in themselves, then no empirical synthesis
of reproduction could take place.”
271

269
Immanuel Kant, Anthropology from a Pragmatic Point of View, vol 7: (Berlin: Reimer, 1907),
167.
270
Immanuel Kant, The Critique of Pure Reason, trans. Paul Guyer (Cambridge University
Press, 1998), 120.
271
Ibid., 229.
197
This is in a sense a semiological argument; for Kant the signifier (and the appearances invoked
by it) must remain relatively stable in order for its significations to function, to become
reproducible. Approximately halfway through Blue, the narrator reflects upon suicide and
euthanasia, and speaks bitterly of morphine, saying: We were lulled into believing morphine
dispelled pain, rather than making it tangible, like a mad Disney cartoon transforming itself into
every conceivable nightmare. This “mad cartoon” (which itself shares a kind of flatness and
screen-ontology with the two-dimensional blue space of the film) seems to provide a
counterpoint to Kant’s amorphous cinnabar. Endless transformation, discontinuity and
unpredictability, becomes the primary characteristic of pain. Pain is not deep here but flat, and in
its flatness it defies meaning and constancy, becomes endlessly re-imaginable. And considering
that blue, like the cinnabar’s red, is itself an attribute, an adjective, a relational and descriptive
word, it becomes clear that fluidity, flux, and adjectival meaning—meaning that is neither
wholly unfixed nor, in itself, complete or isolable—are the primary forms of meaning-making at
work, forms of meaning-making that connect us to Jarman’s understanding of disease, of
identity, of history.
I think this ontology of transformation, of presence-absence, endless change and empty
signification, is not only what a disability aesthetic can provide to documentary but can also be
read alongside both Kant’s notion of imagination and representations —“determinations,” he
calls them, “of the inner sense”
272
—and metaphor, or at least the Aristotelian definition provided
by Sontag at the start of her essay: “metaphor…consists in giving the thing a name that belongs
to something else.”
273
Jarman has done precisely this: Blue is indeed blue, but it is also both

272
Kant, The Critique of Pure Reason, 230
273
Sontag, 5.
198
more and less than the color blue, and its name necessarily belongs to something else–to an
infinite number of other things. In “Out of the Blue (Ex Nihilo),” Akira Mizuta Lippit turns to
Peirce’s work on color, which the linguist describes in terms of firstness—phenomena, like color
and feeling (Peirce includes pain in this category), that present themselves, it would seem,
immediately, without question.
274
Lippit notes that “the totalizing force of firstness” for Peirce is
disrupted by the arrival of sensation. He quotes Peirce: “Suppose I had nothing in my mind but a
feeling of blue, which were suddenly to give place to a feeling of red; then, at that instant of
transition there would be a shock, a sense of reaction, my blue life being transmuted into red
life.”
275
Here we have a different version of the imagination from Kant’s, framed through a
strikingly similar supposition: here we come to understand the imagination as dialectical,
transforming objects in and through relation. Jarman, mere minutes before the film’s end,
narrates an appointment with an eye doctor, whose treatments help stabilize his diminishing
eyesight:
The shattering bright light of the eye specialist’s camera leaves that empty sky blue after-image.
Did I really see green the first time? The after-image dissolves in a second. As the photographs
progress, colours change to pink and the light turns to orange.

Color at the edge of the sensible: color for the near-blind man, color here not as firstness but as
lastness, the last thing captured, or is it seen, or is it felt—changing, dubious, haunting—before
the end, before the dark, the dark of blindness, the dark of the film’s fade into black, Jarman’s
soon-to-come and already-past death.

274
Lippit quotes Pierce: firstness is “all that is immediately present, such as pain, blue,
cheerfulness.” In Akira Mizuta Lippit, Ex-Cinema: from a theory of experimental film and video
(University of California Press, 2012), 27.
275
Ibid., 27.
199
In giving life and eventually death to a concept as intangible, apparently ahistorical, and
diffuse as color, Jarman complicates the question of what can and ought to be alive, be seen, be
considered human – and whether a body is necessary at all. If sick and blind are terms which
themselves require some imagination, terms that are as “there and not-there” in their meanings
and visualizability as the color blue or history or death, Jarman’s cinema can be itself considered
a cinema of imagination, not in its flights of fancy or experimentation but in its bounded
openness, the dialectics it demands, its continuous gesturing towards the space between now and
not-now. In Blue, the ill body is plucked from time and brought into the realm of the figurative—
not in order to diminish or repress its materiality, but rather to open it up to endless possibility, to
life beyond death. I pray to be released from image, asks the nearly-blind narrator of Blue; and
Jarman’s film grants this dying wish both to the imaginary, lost, and longed-for bodies—In
roaring waters I hear the voices of dead friends—at the center of its narratives and to his
spectators, to those of us who stare time and again intently at the screen, transported, looking at
what is there and seeing what is not-there. Rather than metaphorically or symbolically
representing HIV/AIDS or queerness writ large, the disorienting, anti-metonymic, and self-
contained world of Jarman’s film becomes a catalytic site for the intersections of multiple
imaginaries, flat and vast surfaces upon which metaphors can take shape, the blurred and
contested limits of the sick and blind body in space and time projected, given form and life.
O’Daniel’s play with the imagination is, unsurprisingly, less mournful. I will now move back
to one of the earliest sections of The Tuba Thieves, entitled “The Plants are Protected,” which is
approximately 8 minutes long and was completed in 2013. This section engages less explicitly
with absence than either “The Kaleidoscopic Window” or “Hearing 4’33”,” the historical
reenactment I will explore shortly. However, like “The Kaleidoscopic Window,” it deploys
200
direct address and mismatch in order to provoke a complex and incomplete encounter between
sound, image, and language. It does so through one of the film’s other most commonly used
strategies: haptic visuality, an approach to image and sound that prioritizes closeness and texture
over clarity and legibility. In recent work on the sensory turn in queer documentary, Jeffrey
Geiger considers the implications of haptic and gestural images in nonfiction film, particularly
when these images are of or about marginalized subjects: “linking the sensate self to the world,”
he insists, “means perceiving the singular body within the social and ecological body in which it
is imbricated and constituted.”
276
Laura U. Marks describes the haptic image as provoking “a
visual erotics that offers its object to the viewer but only on the condition that its unknowability
remain intact.”
277
The haptic image, as I have indicated in previous chapters. neither subsumes
nor is mastered by the spectator; rather, it shifts the conditions of viewership, reframing the body
as both a sensory field and a social relation—Lippit writes that in the moment of feeling, “blue is
now no longer only blue, but a blue relation.”
278
The haptic image calls upon the faculty of
imagination twice over—both in its evocation of the senses that are not actually being deployed
and in its gesture towards the “bigger picture,” so to speak, that cannot be apprehended all at
once.
“The Plants Are Protected” opens inside of a car in motion. The leaves of succulents unfurl
from the air vents and the driver’s hand adjusts the dial on the radio.

276
Jeffrey Geiger, “Intimate Media: New Queer Documentary and the Sensory Turn,” Studies in
Documentary Film vol. 14. no. 3 (Summer 2019): 195.
277
Laura U. Marks, Touch: Sensuous Theory and Multisensory Media (Minneapolis: University
of Minnesota Press, 2002), 20.
278
Lippit, 27.
201

Figure 69. From "The Plants are Protected"

We are immediately thrust into a world of haptic visuality, too-close, sensual. It is
raining; soon we are glued to the outside of the white van, watching raindrops scuttle along the
metallic surface, looking not unlike a cluster of microorganisms, hurried and thoughtless. I think
back here to both the aesthetic of spill that I elaborated in my first chapter and the myriad leaky
bodies of water that populated my second: to water’s alien and vitally important being, its many
inaccessible presences (the clouds, the deepest ocean, the inside of the body), its non-shape.
Closed captions flit across the screen: first a transcription of the words coming from the
car radio, then [LOUD THUNDERCLAP], then [THE RAIN BEATS AGAINST THE TRUCK
EXTERIOR], then, a good twenty seconds later, [CARS PASS].
202

Figure 70. From "The Plants are Protected"

Figure 71. From "The Plants are Protected"
203

Figure 72. From "The Plants are Protected"

The captions—here too we can recall Ellcessor’s work on translation—do not “translate”
the sounds and images of the screen; they gesture specifically to whatever lies beyond the frame
and enters it aurally. And in this way they become agents of the narrative, markers not of sound
but of time, ways to refocus our attention across the layers of sound and image. So it is at once
jarring and inevitable that, moments later, as the camera pans across the opaque stillness of a
painted wall, the captions seem to come alive: [W H AT IS THIS FILM ABOUT?],
279
and
seconds later, as plant stalks enter the frame again, [IT’S A FILM ABOUT YOU…].

279
In the BOMB interview, O’Daniel says: “When I copied and pasted this quote from a PDF to
a Word document, all of the formatting broke, adding extra spaces between letters. I thought it
was an apt parallel for the way we were working, so I included the abnormal spacing. Nowhere
in the work is it made clear for a Deaf audience that these captions do not have an unseen voice
saying them, but my hope is that the words breaking apart signifies an entire breakdown in the
usual system of describing sound.”

204

Figure 73. From "The Plants are Protected"

Figure 74. From "The Plants are Protected"

205
The captions that follow become the human center of the segment, which has no visible
people nor any audible dialogue. Following Khanna, we might think of the absence of face as the
production of interface: it is only without bodies or voices that the film can truly speak to us.
Closed captions, here, escape their typical association with (frequently faulty) transcription of the
human voice (and, by extension, with sensory disability) and function more like silent cinema’s
intertitles, narrating through disruption. The connection to silent cinema is worth excavating
further. Marks locates haptic cinemas’ historical precedent in the earliest days of film: “the early-
cinema phenomenon of a ‘cinema of attractions’ describes an embodied response…[and] an
immediate bodily response to the screen.”
280
Technological advances and the acclimatization of
the filmgoing public to cinema’s “attractions” shifted both artistic and critical attention away
from the “feeling” of cinema as an experience

and instead toward the construction of narrative
and semiotic systems. For Marks, the late-twentieth-century revival of interest in bodily response
requires us to reconsider the work of early cinema theorists, “bridging the decades in which
cinema theory was dominated by theories of linguistic signification.”
281
“The Kaleidoscopic
Window” enacted an unraveling of cinematic signification; “The Plants Are Protected” brings
language more explicitly into the fold of the senses, one stimulus among many. Like the image,
the captions retain their unknowability through an elastic, dynamic relation to the spectator. Like
the imagination, they take what is relatively stable—language—and open it to new meaning.
O’Daniel’s poetic use of captions alongside her sensuous imagery asks us which kinds of
reading, of meaning-making and translation, shape sensory experiences. And it is here that
disability studies becomes, yet again, a particularly useful critical framework. [IT’S A FILM

280
Marks, 7.
281
Ibid., 7.
206
ABOUT YOU] is direct address without a speaker/gaze and, consequently, without an Other
who might permit identification. It produces and inscribes difference upon the spectatorial body;
again, it makes-strange the act of reading itself, simultaneously drawing our attention to the
film’s surface and the myriad invisible depths beyond it, collapsing the distinction of
inside/outside (of the image, of the body) in favor of a different coconstitutive pair:
present/absent.
The captions continue, a slightly altered and condensed paraphrasing of the words of an
unnamed Russian film critic cited by Andrei Tarkovsky, from Sculpting in Time: Reflections on
Cinema (this is something I know only because the artist herself has told me and others in
interviews; it is not formally attributed to Tarkovsky in the visual space of the film). Tarkovsky’s
critic’s words, in their context, are a response to viewers and critics who found themselves
unable to “make sense” of his film Mirror (1975), who, finding it absent “characters” or
“narrative,” demanded to know “what it was about.”
282
The passage, intercut with the occasional
captioning of the sound,
283
operates on multiple registers. It “speaks” to us without voice, face,
or body; it describes itself as it offers up suggestions for its own viewership. In written language,
which flickers across the bottom corner of the screen, in sharp contrast to the camera’s steady
pan, O’Daniel (via Tarkovsky’s critic) asks us to “watch this film simply,” that is, to look
without expectations, to look without desire, or without a desire for intelligibility; to watch the
film “as one watches the stars, or the sea…”. What is the nature of this gaze? A kind of
absorption, looking without anticipating an event, or a singular object; the gaze demanded by the

282
See: Andrei Tarkovsky, Sculpting in Time: Reflections on the Cinema, trans. Kitty Hunter-
Blair (University of Texas Press, 1987), Introduction.
283
The rain from the first part of the scene continues here, but the occasional thunderclap is
closed-captioned.
207
vast, the unbounded, the inhuman; by celestial bodies, bodies of water, Jarman’s holy blue.
O’Daniel instructs us away from the conventions of cinematic looking, towards a looking that is
not about knowing, a looking that is about meeting, about mutuality. It is a looking that makes
space for imagination—I think here also of Jarman’s “admirable austerity of the void”—and
requires it. To look at the stars and the sea is to see the surface of a great, deep, unseen and
unseeable beyond.
The camera continues its gentle glide across the surfaces of leaves and stalks, rain and
thunder crisp in the background. After a few more moments, the camera zooms out slightly and a
new sound enters: a plant is humming, with a human voice. It is not immediately clear which;
slowly, however, my attention is directed to one of the plants near the center of the frame, which
is quivering in tandem with the swelling humming sound. Soon, a different plant begins to quiver
and hum, and then another. The closed captions perform a key move here: first, they attribute
sounds directly to plants 1, 2, and 3. Then, they too begin to drift, into vaguer descriptions of the
layered sound, of the act of humming.
208

Figure 75. From "The Plants are Protected"

Figure 76. From "The Plants are Protected"
209

Figure 77. From "The Plants are Protected"

Figure 78. From "The Plants are Protected"
210

Figure 79. From "The Plants are Protected"

Figure 80. From "The Plants are Protected"
211
The bioacoustics of plants
284
are not audible within a “normal” human hearing range;
moreover, the humming sounds in this segment are distinctly human, and the captions allude to
their origins in a mouth with lips and teeth. This is an imaginative act—obviously—but it is not
the case that O’Daniel is “giving the plants a voice” and by extension a human interiority here.
Nor is she really imagining what it would be like to hear the sounds that plants make, or the
terms of their communication. Rather, in a similar move to “The Kaleidoscopic Window,” we
are asked to hold three things in tension—what we see, what we hear, and what we read—and
see what emerges when they collide, what each element has to offer and what each leaves out.
Whereas “The Kaleidoscopic Window” worked to create narrative-as-absence, “The
Plants are Protected” asks us to cleave sense from sense-making. It prioritizes forms of
communication that do not imply a normative sense of “speaking” and embodiment—text
without a single source, the fantasmatic buzzing of the natural world. It is nonfiction only in that
it is not quite fiction; it reveals that the technologies used by deaf film viewers (in this case,
closed captioning) are not “mere” prosthetics, making up for a bodily deficit, but modes of
communication and knowledge-formation with their own possibilities for experimentation and
play. As the scene closes, the plants’ hums begin to layer atop one another. As a viewer, I receive
no context, no translation of this plant-song. Instead I am, again, acutely aware of my own
attempts to read, to match sound to image, to hear, to find myself in an image that insistently
does not include me.
I turn now to a final section of The Tuba Thieves, entitled “Hearing 4’33,”” which is a
playful retelling of one of American cultural history’s most infamous absences/silences: John

284
See: Monica Gagliano, “Towards Understanding Plant Bioacoustics,” Trends in Plant Science
Vol. 17 No. 6, June 2012, 323-325.
212
Cage’s 4’33”, which was performed for the first time in 1952 in Woodstock, New York by David
Tudor. As a reenactment, this is the most explicitly “fictive” section I have explored so far, but
ironically (or perhaps, as this chapter indicates, inevitably) also the one that hews most closely to
the conventions of mainstream documentary cinema.
Unlike the previous two sections I have explored here, there are no closed captions in
“Hearing 4’33,’” since all of the sounds on the audio track match up with a visible source
onscreen. In this scene, two channels play simultaneously: we begin with two close pans over the
outside of the building (O’Daniel shot this segment on location at the actual building where the
piece was first performed), the wood grain, glass tiles, and surrounding leaves damp with spring.
Texture and touch are at the fore. As we move into the space, a sudden symmetry flickers across
the screen: the curve of (an actor portraying) Tudor’s back mirrors the slope of the building, and
the air quivers and rustles around them both.
As Marks writes, images of this kind, despite their ability to incite sensory reactions not
typically associated with the filmed image, do not provoke “a ‘sensurround’ fullness of
experience...to mitigate the thinness of the image. Rather [they] point to the limits of sensory
knowledge.”
285
The sensory overwhelm that floods this scene—the two busy screens, the
lingering on the leaves and dirt—produces a marginal encounter, not a simple plenitude.
O’Daniel’s insistence on this tactile closeness and her play with symmetry and shape serves not
only to remind us of the levels of fantasy at play in this reenactment, but of the film’s overall
commitment to understanding (filmed) history as a question of space and form, a set of attempted
arrangements around/of the absent that are nevertheless insistently filled in by the present (much
like 4’33” itself, which is always necessarily altered by the space and site of its performance, as I

285
Marks, 20.
213
will explain further below). Here I think back to the image of Blue at the Getty Museum with
which I opened this chapter. Jarman’s blue screen, suspended, at once flickering and still (and
this, too, calls back to mind Alanna Thain’s evocations of suspense I described in the first
chapter), similarly calls forth what surrounds it, produces a gap around which the frame itself can
finally emerge.
*
In his work on the reenactment, Bill Nichols writes that reenactments “foil the desire to
preserve the past in the amber of an omniscient wholeness.”
286
They instigate a collapse of past
and present, animating both with “the embodied perspective of the filmmaker and the emotional
investment of the viewer”
287
; they draw our attention to the past’s lostness, undermining
documentary’s associations with objectivity or facticity. Reenactments emphasize the ways that
documentary is a (necessarily incomplete) process of retrieval. In so doing, they become indexes
of embodied perception, signifiers of the act of narration itself. O’Daniel’s split screen only
emphasizes this further. The two screens, which initially appear to show the same temporal event
from different angles, sometimes reveal a mismatch in time. The “present” invoked here is shaky
and multiple; occasionally, it is easy to apprehend the two screens as one image, but at other
moments, I find myself without a clear sense of how to direct my gaze.

286
Bill Nichols, Speaking Truths With Film: Evidence, Ethics, Politics in Documentary
(University of California Press, 2016), 41.
287
Ibid., 49.
214

Figure 81. From "Hearing 4'33""

Figure 82. From "Hearing 4'33""
215
The ticking of Tudor’s stopwatch is only audible when our Tudor stand-in is visible in
the frame. When we cut back to the audience, rustling patiently in wait, the ticking stops; this
move also echoes that of “The Kaleidoscopic Mirror,” reinstating the sensory as a precarious and
partial experience rather than a mode of access to what is happening around us. The punch line
of 4’33” is that, rather than producing silence, it produces a performance of sound—the sounds
provoked in the audience by the performance of absence and the frustration and unease that that
absence instigates. Here, however, even that initial, imaginary silence is interrogated. Shortly
after the scene opens, a middle-aged man in the audience rises: we see him on both screens, from
two slightly different angles. He exits the room, and the camera begins to wander—up the
building’s wooden beam on one screen, out into the surrounding woods on the other.

Figure 83. From "Hearing 4'33""
216

Figure 84. From "Hearing 4'33""

Figure 85. From "Hearing 4'33""
217
He begins to make his way through the brush, cracking leaves and branches with his feet.
Here the uncanniness of the scene comes into its fullest articulation: we are watching a
reenactment of a famous surprise, a reconstruction of an already-unachievable silence that is only
legible (or audible) through its announcement of itself, through its purported distinction from all
of the other silences that stir beneath the noise of lived experience. The man here is “silent”
insofar as he does not speak, but he makes other, unwitting noises as he comes into contact with
the earth. What makes his silence materially different from the one being reenacted inside the
building, and what makes that silence different from Tudor’s original act? We know nothing of
this man, of whether or not any such man did get up in protest during that afternoon, but he
replaces Tudor here in his own performance of non-performance: more specifically, he succeeds
in surprising us, leading us wordlessly out of our expectations, into the elusive and always-silent
past.
Blue, too, leads us across time. Through the uniformity of its visual field, Blue may resist
narrative but is not atemporal. Rather, it becomes pure sequence; each statement, each sound or
song, is contextualized and given (some, if not all, of) its meaning by what precedes it and what
follows. This is not unlike Sontag’s description of the temporality of AIDS, defined more by
being a sequence of progressively worse symptoms than by having a universal and recognizable
trajectory. In this way Blue’s trajectory of movement, from distance (outside or deep within the
body) to closeness (me, my skin, my eyes), past to present, and present to foreboding, empty
future, opens up a visuality that is ontologically analogous to the metaphoric and imaginary. At
one point, a speaker proclaims: fight the fear that engenders the beginning, the middle, and the
end. The film is filled with axiomatic statements of this kind; here, perhaps most explicitly,
Jarman makes a distinct value judgment about the strictures of normative narrative and
218
normative time. This is not an Edelman-esque disavowal of the future—indeed, it seems that
upon the encounter with bodily deterioration and imminent death the question of futurity,
reproductive or otherwise, loses some of its salience—but instead a resistance to teleology and to
the kind of imagining that organizes both the visual field of the cinematic, the semiologic, and, I
would argue, the embodied self into a cohesive and consistent singular whole, marching in a
straight line (so to speak) from birth to death as from signifier to signified.
How can we think wholeness relative to Blue? Space in this context is just as important as
time. Faced with the unflinching blue, with the distant voice and the (doubly) absent body, we
experience what Merleau-Ponty (and following him Vivian Sobchack, and more recently Slava
Greenberg in their work on disability and documentary) describes as the sensible/sentient or
objective/phenomenal body: an ongoing and visceral exchange between the world as it is
apprehended and the world as it is experienced, between the non-visible (rather than invisible)
depths that fill the space of Jarman’s blue screen and the similarly non-visible machinations of
the fleshly body.
Nichols suggests that reenactments enact a vivification of the past which is “neither evidence
nor explanation…[but] a form of interpretation, an inflection that resurrects the past to reanimate
it with the force of a desire.”
288
“Hearing 4’33”” exemplifies O’Daniel’s desire to resist evidence
and explanation. Some of documentary’s oldest formal tropes, in this context, become new ways
to gesture continuously towards that which can never be fully known.
This return to the notion of interpretation, via Nichols, brings me to the final film I explore
here, a coda of sorts to Blue and The Tuba Thieves: Mel Baggs’ short film In My Language,
uploaded by Baggs to YouTube in 2007. Baggs, who passed away in 2020, was a prominent

288
Ibid., 50.
219
disability justice activist in many online spaces. (Because Baggs was non-binary, I will use
they/them pronouns to refer to them henceforth.) Baggs was multiply disabled and chronically
ill, but their autism is of primary interest here. Often described as a nonverbal autistic person,
they did not speak aloud, though they did communicate in written English. For this reason, I
would contest the uncomplicated use of the term “nonverbal” to describe Baggs, because unlike
a number of other nonverbal autistic people, they did communicate using words in the dominant
language of their environment; so it is not so much language as voice, in the Aristotelian
sense,
289
that is not present here. Pooja Rangan suggests that “autistic accounts of language and
communication locate the voice in a space between the body and language.”
290

In My Language is deceptively simple. The first three minutes or so show Baggs, or parts
of Baggs’ body (a hand, an arm), performing repeated and simple gestures and humming:
wiggling fingers around under a running faucet, rocking back and forth in a chair, feeling the
textures of a window. And then, suddenly, the screen goes dark, and text appears: A Translation.
The following five minutes, which include both more of the same and some new images, are
narrated using text-to-voice technology typed by Baggs (we see them typing at one point). The
text begins, in both narration and captions at the bottom of the screen:
The previous part of this video was in my native language.
Many people have assumed that when I talk about this being my language, it continues,
Baggs’ fingers making circular motions under the running faucet we saw previously, that means
that each part of the video must have a particular symbolic message within it designed for the
human mind to interpret. But my language is not about designing words or even visual symbols

289
Pooja Rangan, Immediations: The Humanitarian Impulse in Documentary (Duke University
Press, 2017), 126. Rangan paraphrases Aristotle here: “voice is sound with a meaning.”
290
Rangan, 108.
220
for people to interpret. It is about being in a constant conversation with every aspect of my
environment. Reacting physically to all parts of my surroundings. In this part of the video the
water doesn’t symbolize anything. I am just interacting with the water as the water interacts with
me.

Figure 86. From Mel Baggs' "In My Language" (2007)

Baggs goes on to elaborate the terms of their native language. They consider it ironic that
although their language is, as they say, about a “constant conversation” with the environment, it
is perceived from without as “being in their own world,” as being outside of the world rather
than totally enmeshed in it. They note, too, that they are only legitimated in the eyes of others
when they communicate via English—what they call “your language”—but that abled speakers
of English are never called upon to learn their language. This is a polemic, clearly addressed to
an abled, speaking audience; it is a call to face the degree to which normative linguistic
expression is tied to personhood, and to recognize, by extension, the kinds of abuses that are
221
inflicted on those deemed somehow less than human. In this way it is quite clear what the film is
trying to do.
Trinh warned against the way that a documentary ethos bent on locating the (never-
localizable) real would inevitably send the social documentarian in search of his ideal subject:
“man, simple man, who has never expressed himself.”
291
The documentarian can then easily take
on the role of “the almighty voice-giver…whose position of authority in the production of
meaning continues to go unchallenged.”
292
Baggs’ film is an explicit rejoinder to this in many
ways: as someone who is regularly perceived as “never expressing themselves,” they reveal, over
the course of the film, not only a fluency in “our language” but access to another language, a
more haptic and unfixed language, one that is entirely produced in the moment of encounter, one
that, they suggest, accounts for what is made marginal in a phonocentric and logocentric society
(here I think back to Bauman and sign language’s “non-presence” noted earlier). This is, in a
sense, an imaginary language, always on the horizon. What interests me here is the way the
film’s two-way transformative structure enacts the kind of linguistic intervention Baggs makes
within the narration. The first half of the film is transformed retroactively, in relation to the
second half, so that what meaning is there is produced via the encounter, within and on the terms
of its environment. Much like Peirce’s transition from firstness to secondness, the film begins by
presenting us with what is immediately there, and then in the shock of transition—the arrival of
language—we come to understand those images newly, in relation. Each half of the film thus
transforms the other, but both rotate around the silent center. Baggs’ “translation” of the film’s
first half does not give us access to their language or even to some kind of meaning. Rather, it

291
Trinh, 96, citing Pierre Perrault.
292
Ibid., 96.
222
reveals the limitations of our language, its inherent partiality, what it cannot account for. In this
way it also functions like a metaphor: a site of mutual transformation, always, around an empty
center that is necessarily shared and necessarily absent.
Muteness here is disentangled from its associations with silence, absence, and erasure
(indeed reaffirmed as a form of hyper-presence; each shot is either of Baggs or filmed from a
point on their body, with some part of their body in the frame, or the sound of their voice in the
background), rendering the relationship between pathology and narration—and the character
and/or translator who must work between the two—more complex. Baggs’ film subverts the
explanatory, causal logic of conventional medical discourse—and the documentary “quest” I
described at the start of this chapter. Baggs’ film plays with the temporal cliché of the medical
narrative—the fantasy of return to the past, the search for explanation, for something (literally, in
this case) legible—and instead takes situates the problem in our reading and not in their
pathology. Baggs sees their film as a challenge to “what gets considered thought, intelligence,
personhood, language, and communication.”
293
It is equally a challenge to what constitutes
interpretation and narrative, to what constitutes continuity and the production of meaning.
***
Nonfiction film’s connection to truth has as much to do with the suggestion of missing
information as it does with the presentation of socio-historical or individual facts and lives. In its
connection to a tangible, pluralistic, and expansive spatiotemporal world outside of itself,
nonfiction media always inherently suggests—and relies on—a living incompleteness that
anchors the onscreen sounds and images. By resisting stability and enclosure, The Tuba Thieves

293
Baggs’ description of the video on YouTube
[https://www.youtube.com/watch?v=JnylM1hI2jc&t=1]
223
(which, as of May 2021, has yet to be screened publicly in full) not only reclaims the “missing”
but reminds us that the missing, the absent, the marginal and incomplete are what support our
individual and collective structures of belief. These are documentaries that make space for the
imaginative and the dreamlike, in the quite literal sense: an elusive imagery that accompanies
lived experience and yet is not quite a part of it, that is viscerally experienced and yet not easily
assimilable to the real. O’Daniel, Jarman and Baggs resist disability documentary’s clichés
(medical mysteries, empowering narratives of “overcoming”) and engage disability as a space of
openness and play. The “truth” of disability is complex; it imbricates the medical, the social, and
the personal. “The sensible,” Merleau-Ponty writes, is “nothing but a vague beckoning.”
294
These
experiments in cinematic absence, accessibility, and address open up new possibilities for
theorizing nonfiction media by disabled artists and/or about disabled communities; like the stars,
or the sea, they beckon us, gently and powerfully, towards a different center.

294
Maurice Merleau-Ponty, Phenomenology of Perception, trans. Colin Smith (London:
Routledge, 1962), 214.
224
CHAPTER 4

The helpless longing of a ghost
295

Like death, love must be experienced and cannot be represented (it is not called the little death
for nothing) without violating its nature. This violation is called obscenity. The representation of
a real death is also an obscenity, no longer a moral one, as in love, but metaphysical. We do not
die twice.
-André Bazin, Death Every Afternoon
296

Illness often takes on the disguise of love, and plays the same odd tricks, investing certain faces
with divinity, setting us to wait, hour after hour…
-Virginia Woolf, On Being Ill
297

50 minutes before Akira Kurosawa’s Ikiru (To Live) (1952) ends, its protagonist, Kenji
Watanabe, dies. We have known since the film’s start that he will, but his death nevertheless
takes us by surprise, as all death does, impossibly, inevitably. In some ways Ikiru’s narrative is
extremely conventional: Watanabe is a lonely, quiet bureaucrat at the high end of middle-age, a
widower who spends his days mindlessly stamping city paperwork and his nights at home with
his son and his daughter-in-law, who care little for him. A nagging stomachache brings him to
the doctor; the doctor’s excessively polite diagnosis of a “mild ulcer” is understood for what it is,
which is terminal stomach cancer; Watanabe sinks first into a great despair, and then a search for
meaning and identity that takes him, perhaps predictably, first to empty debauchery, then to new
friendship, and finally to a sense of purpose in his work, a desire to make a lasting mark on his

295
I take this title from Hervé Guibert’s To the Friend who Did Not Save My Life (Editions
Gallimard, 1990), in a passage where he writes of writes of his changing relationship to
attraction following his diagnosis with HIV: looking from afar at young men, he writes of “from
now on feeling for them an incorporeal attraction, the helpless longing of a ghost, and never
speaking of desire ever again” (63).
296
André Bazin, “Death Every Afternoon,” in Ivone Margulies, ed., Rites of Realism: Essays on
Corporeal Cinema (Duke University Press, 2003), 30.
297
Woolf, On Being Ill, 34.
225
community. He heeds the long-unmet demands of a group of local women concerned about a
contaminated pool and pours his energies into the building of a new playground on the land. But
this last part—what Watanabe does once he finally summons the wherewithal to act—vanishes
from the narrative along with him, told only in halting flashbacks during the film’s extended
final sequence, which is set entirely at Watanabe’s funeral.
Impending death’s singular ability to jolt the complacent man from his perch is hardly
untrod narrative territory. What interests me, however, is the way that Kurosawa’s decision to
end his protagonist’s life long before ending the film itself allows us to think more capaciously
about what death means, or rather, how death functions as a locus of meaning, how death—
specifically, death by illness—is always both a producer of a singular identity and a social,
interpersonal act, both a single moment
298
and a drawn-out process. Unlike, say, Marion Crane’s
death in Psycho, Watanabe’s death does not propel the narrative forward (or we might say
backward) towards locating its origin;
299
we know what led to it—and so the rest of the film is
doomed to remain trapped in the present, to stay in the funereal room nearly in “real time,” to
simply sit, quite literally, with what has happened. There is nowhere to go; all that is left to do is
acknowledge what has taken place, to mourn. Attempts to interpret Watanabe’s death by a
chorus of secondary characters—who wonder whether he knew he had cancer, what his last
moments were like—prove futile and frustrating. To return to Aristophanes’ hiccup, invoked in
my first chapter: the death in this film means that it means. But how? And to whom?

298
Bazin writes, in Death Every Afternoon: “Death is nothing but one moment after another, but
it is the last.” (30)
299
For more on this, see: C.J. Combs, Deathwatch: American Film, Technology, and the End of
Life (New York: Columbia University Press, 2014.
226
Ikiru is both about a long, slow death and a sudden one. And I should be clearer about
how, exactly, Kurosawa represents this death. Watanabe has returned to his office after taking a
few weeks off (the first of his career). His newfound energy confounds his coworkers. He
decides not only to take action about the playground but to act now—“get me a bicycle,” he
commands a subordinate, “I’m going out to survey the site”—and marches briskly out the door
as his colleagues look on. And then we cut, suddenly:

Figure 87. The protagonist of Ikiru has died (Ikiru, Akira Kurosawa, 1952)

Rather than arriving at death—the end—as a final darkened screen, or even as a visible
spectacle (the deathbed, the hospital room)—Kurosawa’s insistence on representing death twice,
through the cinematic cut and the photograph, thematizes the relationship between image,
language and time—a particularly cinematic relationship, this chapter will argue—that takes
227
shape in the world of the terminally ill, or to use a more colloquial and evocative phrase, the sick
and dying.
***
The three films I examine in this chapter may seem an unlikely grouping. The first, Ikiru,
is, as I have just described, a fictional film, an existential parable that is deeply of its (postwar,
post-Hiroshima) time: faced with terminal cancer, the anguishing certainty of his own finitude, a
man comes to fully recognize his responsibility, his accountability for his own choices and his
ability to construct the terms of own life.
300
Watanabe has been living in classically bad faith,
allowing his duties—as a civil servant, as a father—to absolve him of any agency of his own.
The other two films, which bear striking resemblances to one another in a number of ways, take
us forty years into the future, during another twentieth-century event of mass death—the AIDS
crisis.
Begun as a camcorder video diary by filmmaker Tom Joslin, and completed and edited
by his good friend Peter Friedman per his request following his death in 1990, the 1993
documentary Silverlake Life: The View from Here tells the story of Joslin and his partner Mark
Massi, who have both been diagnosed with AIDS, as they navigate the final months of Joslin’s
life. The film’s footage, shot by Joslin, Massi, Friedman, and their friends and students over the
course of several years (and intercut with decades-old home video and one of Joslin’s earlier

300
In invoking existentialism I mean here that the film is deeply aligned with the kind of
thinking we find in the work of Jean-Paul Sartre, who defines responsibility as “consciousness
(of) being the incontestable author of an event or of an object…it is simply the logical
requirement of the consequences of our freedom. What happens to me happens through me, and I
can neither affect myself with it nor revolt against it nor resign myself to it.” When the “what
happens” is sickness, this takes on further nuance. Jean-Paul Sartre, Essays in Existentialism,
trans. Wade Baskin (New York, Citadel Press, 1993), 64.
.
228
films, Blackstar), comes to form a set of interconnected portraits: of the inquisitive, sharp Joslin
himself; of his loving relationship with the witty, cynical Massi; and of a community trying to
hold itself together in moments of unbearable fracture. The film was released on PBS in 1993,
which was a key year for HIV/AIDS media, and its impact was vast and immediate. Meanwhile,
in France, the prolific young writer and photographer Hervé Guibert shot his only documentary,
La pudeur ou l’impudeur (as many have noted, this title is nearly impossible to translate
accurately, but is most commonly translated in English as Modesty and Shame, and so I will
follow this lead) between June 1990 and March 1991 as he was dying of AIDS. He was invited
to make the film by Pascale Breugnot, a producer for the French television channel TF1, and the
film was released in January 1992 on television, although it was postponed by several weeks due
to TV executives’ concerns about its subject matter.
301
Guibert’s body of literary work has
recently received more attention in the United States,
302
and he is best known, in France as well
as abroad, for his final book, To the Friend who Did Not Save My Life, a fictionalized account of
his own experience of AIDS as well as the AIDS death of Michel Foucault, who largely kept his
disease (and his sexuality) from being public knowledge, and with whom Guibert was very close.
La pudeur ou l’impudeur has received relatively little attention in English-language AIDS media
scholarship; I have not been able to locate a version of the film subtitled in English, and
throughout this chapter I have translated any of the spoken content of the film (which is mostly
voiceover) into English myself. I find myself surprised by the lack of scholarly interest in this
film, not only because it is a powerful document in its own right, but because of how closely it

301
For a detailed account of the film’s postponement, see Jean-Pierre Boulé, “The Postponing of
La pudeur ou l’impudeur: modesty or hypocrisy on the part of French television?” French
Cultural Studies, vol. 3 no. 3 (1992): 299-304.
302
For more on this, see Parul Sehgal, “A French Writer Who Blurred The Line Between Candor
And Provocation,” The New York Times Books, June 8, 2020.
229
mirrors Silverlake Life, though I have no reason to believe that the filmmakers knew much (if
anything) of one another or of one another’s projects. Both films are intimate video diaries, shot
on camcorder, set almost entirely within the home; both move through the strange, uneasy, both
long and short period of time between receiving the news that one is going to die and actually
dying.
303
Both track their subjects’ increasing frailty, their emaciation,
304
their unending physical
pain; their interactions with doctors and other medical specialists; both are deeply thoughtful
films by lifelong experimental and independent artists who are clearly curious and self-conscious
about the political and artistic potential of their projects, and struggling to fit AIDS into their
larger bodies of work. Both Guibert and Joslin make a final voyage home to see relatives whose
history of homophobia only compounds the pain of their goodbyes. Both films are devastating
and, at times, nearly unbearable to watch. An important difference is that Silverlake Life is as
much the story of a couple as it is of one man’s death; and Modesty and Shame is, above all, a
document of deep solitude.
And so why stage this encounter, between Ikiru and these two AIDS films? I do so here
because I think that we can see each film differently through the others: as ways of
understanding terminal illness and death as intersubjective, as producing a kind of mutual gaze

303
James N. Agar writes that in Guibert’s novel Incognito, the author reflects: “three years on, he
has discovered that AIDS gives you plenty of time to die.” James N. Agar, “Self-Mourning in
Paradise: Writing (about) AIDS Through Death-Bed Delirium,” Paragraph vol. 30 no. 1, 2007:
68.
304
Ross Chambers suggests that the liminal life/nonlife status of the cinematic image can be
understood as having a kind of “thinness,” a lifely quality that is nevertheless not “robust,” so to
speak, and that thinness is thematized in La pudeur et l’impudeur as a kind of death made visible
twice over, through the literal emaciation of the AIDS patient’s body that itself signifies a
coming death. Ross Chambers, Facing It: AIDS Diaries and the Death of the Author (University
of Michigan Press: 1998), 40.

230
that reveals the subject’s “true self” not as singular or discrete but as endlessly transformable. In
their tender portraits of the dying, these films open up the question of what, precisely, it means to
live.
***
All three films begin with the end. That is, each begins by announcing, however
differently, its protagonist’s fate. Ikiru opens with two X-ray images, and the voice of an
anonymous narrator speaks:

Figure 88. Watanabe's stomach, seen in an X-ray (Ikiru)
231

Figure 89. The narrator speaks of Watanabe's stomach (Ikiru)

The next shot, to which I will return later in this chapter, is of the man (Watanabe) in whom this
stomach resides, seated at his desk at his government job. The X-ray image serves several
important functions here. Technically, it is a source of information—privileged information,
even. Though it would not (at least to the lay person) be clear from the image that the stomach in
question has a cancer, the X-ray stands in for a kind of certainty, for scientific knowledge, but
also for a specialized knowledge that is now shared between spectator and physician, who are
both able to see inside and, as a result, ahead of our subject. The X-ray photograph merits brief
further consideration. Lisa Cartwright describes the X-ray (famously discovered in 1895, the
year cinema was “born”) as enacting “a pervasive disciplinary gaze—a truly radiant gaze—that
threatens to perform a quite literal disintegration of the body...[it yields] a system of visual
knowledge that has made good…the threat of corporeal annihilation metaphorically posed by
232
medical imaging in other contexts.”
305
The X-ray is relatively unique as an imaging technology
in that its production entails a process that is also destructive, at least partially, of its subject. And
so to see an X-ray image is to see not only the body’s interior: it is to see the traces left on the
photographic plate by a light that “physically penetrates its object, stripping away its concealing
surface to lay its structure bare.”
306
It is perhaps no surprise that Ikiru begins this way, because
Watanabe’s cancer functions, narratively speaking, in much the same way as the X-ray itself: in
its destruction it lays bare the true nature of things—the failures of Watanabe’s life, the small-
mindedness of those around him, the futility of his job and of his entire workplace. Akira Mizuta
Lippit, in “Phenomenologies of the Surface: Radiation-Body-Image,” makes the X-ray’s
connection to knowledge both more abstract and more explicit: “the absolute radiance unleashed
by the X-ray,” he writes of the technology’s early days, “now absorbed the subject, enveloped it
in a searing light. The Enlightenment subject had become the focus of its own penetrating
look.”
307
The X-ray presents a kind of limit-point of knowledge, an all-consuming illumination
that not only brings the inside outside but collapses the seer and the seen. And, importantly,
Kurosawa’s camera, always a step ahead of Ikiru’s narrative, mimics this knowing and this life
beyond death: its own “penetrating look,” as I indicated at the start of this chapter, cuts straight
through Watanabe’s life and to the other side.
Silverlake Life begins not with an image of Tom Joslin, but with the camera trained on
his partner, Mark, who is resting on a couch in their home. Slowly, the camera pans around the
room, and comes to rest on a television set, where part of Tom’s footage is playing.

305
Cartwright, 108.
306
Ibid., 113.
307
Akira Mizuta Lippit, “Phenomenologies of the Surface: Radiation-Body-Image,” Qui Parle
vol. 9 no. 2 (1996): 34.
233

Figure 90. A message from Tom to Mark (Silverlake Life, Peter Friedman, 1993)

We know, from the start, that the doubly-mediated Tom in this image—on his television, on our
television—is speaking from beyond the grave, or more aptly, speaking from before the grave in
order that his message might arrive to Mark once he can no longer deliver it in person. We know,
too, that Mark will outlive Tom (and, watching the film in the present day, we watch it knowing
that Mark only outlived the film by a few years). Then a series of images roll across the screen,
including, also, an X-ray:

234

Figure 91. One of Tom's X-Rays (Silverlake Life)

Here, rather than gesture toward medical knowledge or the future, the X-ray becomes an
alternative mode of portraiture (and indeed, all three of these films are portrait films, portraits of
the subject whose identity is changed—or, to use the language of the X-ray itself, revealed,
thrown into relief—by illness). The skull cannot but evoke death, but also a kind of loss of self,
even in life: to be shown one’s insides in this way is to confront not only the unknowability and
foreignness of those insides but also what one shares with others, an alien and deindividuated
structure. Cartwright describes the X-ray photograph as “icon and fetish, a frozen moment of
death in life.”
308
By showing us what resides within, these images show us the corpse waiting to
emerge: “Though none of us has ever experienced our own death,” Drew Leder writes, “it ever
seeds our body, waiting to blossom.”
309
Much like the images I invoked in the first chapter of

308
Cartwright, 131.
309
Leder, 141.
235
this manuscript, these X-rays fail to deliver much by way of information, though here in the
opposite way: we see, presumably, the illness, but not the subject.
Guibert takes a different approach: he begins his film simply, with two subsequent
intertitles. The first reads: This film was shot by Hervé Guibert with a Panasonic camcorder
between June 1990 and March 1991. The second: Hervé Guibert died on the 27
th
of December
1991. Here, too, the subject’s absence is made immediately palpable, in a slightly different sense:
the second intertitle cannot have been put there by Guibert himself. He shot and edited the rest of
the film, but this moment, brief as it is, unsettles not only because of its content but because it
reveals a second voice present in the text: not just a second voice that is present, but a second
voice that is the present, that names the moment in which we are watching and Guibert is gone.

Figure 92. An intertitle at the start of Modesty and Shame (Modesty and Shame, Hervé Guibert,
1992)
236

Figure 93. A second intertitle announces Guibert's death (Modesty and Shame)

The first image after these intertitles is of Guibert at home, on the phone, talking to someone—a
friend, presumably—about a recent round of medical testing and his upcoming appointments.
“Also,” he adds near the end of the call, “you’ll have to come over, because there’s a bottle—a
serum I need—that I can’t open.” And soon, we see him at the doctor’s office, and a voiceover
begins, Guibert’s voice: The process of deterioration initiated in my blood by AIDS accelerates,
day by day. Long before my illness had been confirmed by medical analysis, I felt my blood
suddenly exposed, half-naked, as if some garment had always covered it without my knowledge.
Guibert is a fractured subject, splintered across time: dead now; alive and in need of help now;
accelerating towards the future, his past laid bare before him.
In Ikiru, we meet Watanabe in the days prior to his fateful doctor’s visit, then we
accompany him to the doctor, and we linger on past his dying; in Silverlake Life and in Modesty
and Shame, we enter the story only after the diagnosis has been confirmed. “Diagnosis,” writes
237
Eli Clare, “projects the concept and practice of disorder onto us.”
310
Clare means, here, that in
the moment of diagnosis one becomes aware of one’s body as aberrant, in need of fixing; that to
be “diagnosed” means to be deemed somehow out of order, broken-down. But Clare, who has
cerebral palsy and whose book Brilliant Imperfection asks us to think seriously about the
implications of the desire to “cure” disability rather than live with it, is talking here about a very
specific form of diagnosis, one like his own: a diagnosis that is a kind of starting-point for a new
identity (going from merely different, symptomatic, etc. to disabled, autistic, contagious). In the
case of chronic illness, however, things are a little different. Indeed, diagnosis introduces
disorder alongside a kind of macabre order: a clear trajectory towards death—a predictable,
knowable death. “I know how it ends,” Detective Takabe’s wife said, in Cure’s first scene: and
these films do too. Put simply, they mirror the terminal diagnosis: they begin by confirming the
end. They begin by showing us something—someone—who we know is also already gone.
I find myself, in this final chapter, back at questions of illness and absence, of the ways
illness and absence can be imaged and imagined, though I am now on the other end of it. Where
I began this text thinking about contagion—about onset, symptom, contamination, the moment
when the well become ill—here I am thinking about when the living become dead, chronic
illness’s slow creep towards death, and the unhealable wound left in death’s wake. I am thinking
of the ways that people like Jarman, who knew they were dying as they were dying, attempted to
articulate this dying, and how the people around the ill and dying subject are always necessarily
reoriented in their own experience through this particular form of drawn-out loss. If, as Snyder
and Mitchell wrote, “deficiency inaugurates the need for a story,” what does death inaugurate?
How does one tell the story of one’s own disappearance? Rosemarie Garland Thomson, in her

310
Eli Clare, Brilliant Imperfection: Grappling With Cure (Duke University Press, 2017), 43.
238
work on feminist disability studies, writes that “the body haunts the subject.”
311
In this chapter I
take that haunting quite literally. What happens when the cinema’s reconfigurations of time and
space collide with the reconfigurations of body and subject produced by terminal illness—when
the body lives, reads, and writes its own expiration?
The connection between death and film theory (as well as film history)
312
is foundational
and vast. I will not attempt to cover it in its entirety here; but it is well worth some consideration.
Bazin’s suggestion that cinema “embalms time” is perhaps the most enduring reference to death
across his oeuvre
313
(and it is worth noting that the metaphor of mummification, of the
preserved-dead or the living-dead, comes up in Ikiru’s narrative—Watanabe’s young, exuberant
coworker, with whom he strikes up a brief friendship after his diagnosis, reveals with some
regret that she had nicknamed him “The Mummy” at work), but I am especially interested in
what Bazin has to say about death in a short essay called “Death Every Afternoon,” written about
Pierre Braubenger’s 1949 documentary The Bullfight, which shows the goring of a toreador.
Bazin here realizes that death is uncapturable on film because film renders it repeatable—and, as
he writes in the first epigraph to this chapter, this very unrepeatability is precisely the nature of
death. Because, he writes, death is “the qualitative instant in its purest form,”
314
because it cannot
be undone and because it is the only act that cannot be remembered by the one who performs it,
to film death is inherently to violate it: “I imagine the supreme cinematic perversion,” he goes

311
Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” in in
The Disability Studies Reader, 2nd edition, ed. Lennard J. Davis (New York: Routledge, 2006),
268.
312
In Deathwatch, C. Scott Combs traces cinema’s fascination with death to the 1895 The
Execution of Mary, Queen of Scots, by the Edison Company (2).
313
Quite famously: with the advent of the cinema, Bazin writes, “for the first time, the image of
things is likewise the image of their duration, change mummified as it were.” André Bazin, trans.
Hugh Grey, What is Cinema? (Berkeley: University of California Press, 1967), 15.
314
Bazin, “Death Every Afternoon,” 30
239
on, “would be the projection of an execution backward like those comic newsreels in which the
diver jumps up from the water back onto his diving board.”
315
In Ikiru, we see nothing of death
nor even of bodily deterioration as it approaches: in a way that Bazin would, perhaps, have
approved of, Watanabe’s death is made all the more palpable for its omission. First, as
spectators, we find ourselves in a world with Watanabe in it; then, in one without him. His death
is thus the only part of the film that cannot be repeated. In Modesty and Shame, although the film
ends with Guibert still living (the film’s final shot is of him seated at his desk, writing), there is
an extended sequence near the film’s end during which he attempts suicide, and lives. In
Silverlake Life, we come closest to the moment of death: though we do not see it “happen,” Mark
films Tom’s dead body mere moments after he has passed in one of the film’s most emotional
and disturbing sequences. I will turn more closely these two latter scenes shortly. But the
question of what it means to die on screen—and of what death has to do with perception—
remains open.
For Bazin, then, death is what gives life its temporal structure, a temporal structure that is
ontologically distinct from that of cinema.
316
Merleau-Ponty reminds us that death, as that which
cannot be experienced by the dying subject, shares with other forms of sense experience a
complex relationship to the subject, one in which neither is primary to the other: like the
sensible, death only comes into being through the subject, but it does not inhere in the subject. “I
am no more aware of being the true subject of my sensation than of my birth or my death.
Neither my birth nor my death can appear to me as experiences of my own, since, if I thought of

315
Bazin, “Death Every Afternoon,” 31.
316
Bazin writes: “For every creature, death is the unique moment par excellence. The qualitative
time of life is retroactively defined in relation to it. It marks the frontier between the duration of
consciousness and the objective time of things.” “Death Every Afternoon,” 30.
240
them thus, I should be assuming myself to be pre-existing to, or outliving, myself,” he writes in
Phenomenology of Perception.
317
Moreover, he goes on, birth and death “belong to a natality and
mortality which are anonymous.”
318
That death is the (or an) endpoint of the subject is relatively
obvious. But there are two complex relations here I want to unpack a bit further: first, that my
death is mine and can happen only to me, but is also anonymous, that is, a process that precedes
and surpasses me; and that this paradox is not unique, but is true of many other kinds of
embodied perception and experience during life. And this may help me further understand why,
beyond mere cultural taboo, death and its representation (whether narrative or documentary)
have fascinated and confused both filmmakers and critics for so long. In Deathwatch, C. Scott
Combs writes: “As I look for death in the moving photograph, I cannot find it either in the body
onscreen or the fixity of the image. Instead, I can trace its reverberations outside the body, in
external space, related faces…and in the spectator’s own body.”
319
And so, strangely, the death
onscreen, despite whatever omniscience distance would seem to provide, mirrors my own very
real death: it eludes me, and where, exactly it resides is unclear—not exclusively in the dead
body, nor in the image of the dead body, nor in my own apprehension of it, but somewhere in
between. It is for this reason, too, that, counterintuitive though this may seem, death becomes the
strange site of convergence where my analysis of narrative and documentary cinema can meet.
Of course these are technically different deaths. But cinematic death’s relationship to the real and
fictional is not so clear cut. Because death, despite our certitude, is always in some sense irreal,
its representation always in some sense imaginary, always doomed to reside, unsatisfyingly,
painfully, in the living.

317
Merleau-Ponty, Phenomenology of Perception, 215.
318
Ibid., 216.
319
Combs, 12.
241
Of the three films I explore in this chapter, only one goes so far as to show a dead
body—and this brings me to the particular ethical implications of filming death. Vivian
Sobchack’s “Inscribing Ethical Space: Ten Propositions on Death, Representation, and
Documentary” remains a central text for contemporary scholarship on death in the cinema.
Sobchack argues that because, once the moment of death has passed, the body itself passes into a
thingness from which it cannot return—a non-being that is not lived, an object outside of time—
the corpse itself cannot signify death as transformation. That transformation can only,
paradoxically, occur in and around the living body. She makes the case that death, as nonbeing,
is never actually visible; what troubles us about its representation is the fact that dying is a kind
of bodily transformation, a moment when the mysterious semiosis of the body reveals itself.
Naming death, excretion, birth, and the sex act as examples of bodily transformation, Sobchack
writes that what the modern subject fears is
“those particular bodily signs which indexically point to and foreground the essential
mystery of bodily being and nonbeing…the deformed living body and the human corpse
serve as radical signs of human ‘matter’ transformed ‘from one state to another.’ The
body is thus the primary indexical sign of what Langer calls ‘the universal dilemma of
dealing with one’s ‘creatureliness.’”
320

I am struck here by Sobchack’s pairing of the deformed living body and the human corpse, as
well as her mention, via Langer, of “creatureliness.” This reveals not only the conceptual linkage
between disability and death—two phenomena wherein the body’s ongoing “anotherness” to
itself, to return to Thain, become particularly acute—but also the way that, to briefly recall my
second chapter, nonhuman life suddenly becomes less distinguishable from human life when we
are faced with our materiality, our mutability, our thingness and, to return to Merleau-Ponty, the

320
Vivian Sobchack, “Inscribing Ethical Space: Ten Propositions on Death, Representation, and
Documentary,” Quarterly Review of Film Studies, vol. 9, no. 4 (1984): 286.
242
anonymity that bookends our being. In Ikiru, Watanabe’s young colleague remarks, of his
strange new behaviors post-diagnosis: “it’s like you mutated.” And this mutation, in Ikiru, has
the effect of turning Watanabe outward: driving him to affect others. If, as Adam Smith writes,
feeling is how we become another,
321
I want to argue here in part that death in these films is how
we become other(s): how we become in the most final way possible other to ourselves but also
how the possibility of any meaning whatsoever to our existence—not in the colloquial sense of
emotional fulfillment, but in the strictest semiotic sense—becomes entirely displaced: to others,
and to the image, and to their intersection. So much early cinematic discourse around film’s
relationship to death has to do with the notion of preservation, the dead subject newly alive or the
living subject newly spectral in the space of the screen-image. But I want to argue that film’s
privileged relationship to death has at least as much to do with the particular forms of
intercorporeality and enmeshment that death via illness provokes. In his writing on Modesty and
Shame, Ross Chambers writes that Guibert, as “a dying subject, through facing death—
confronting it as close as representation will permit—might hope to outlive that
experience…through a transformation of subjectivity (from authorial to textual, say), that is,
through a becoming other.”
322
Unlike Bazin’s cinematic reverse-execution, then, this vision of
cinematic death is one in which the subject is transformed (mutated, even) from a physical body
into an image and a text, and in that transformation outlives death, not in the endlessly-
replayable image, but in the still-living spectator.
Death-writing and life-writing: a reciprocal approach

321
I draw here from Brinkema’s citation of Adam Smith in The Theory of Moral Sentiments: he
writes that in moments of strong sympathetic feeling, “we conceive ourself enduring all the same
torments, we enter as it were into his body, and become in some measure the same person with
him” (12).
322
Chambers, 43.
243
I ought to clarify the connection between Silverlake Life, Modesty and Shame, and
disability theory further. Unlike the documentaries I explored in the previous chapter, these are
straightforward accounts of individual experiences with illness. Their self-authorship (and
refusal to grant “expertise” to the medical arena), in particular, is important here. Disability
scholars G. Thomas Couser and David Mitchell have, among others, written compellingly about
the genre of the disability autobiography (or, as Couser calls it, the “life-writing” of disabled
subjects).
323
It is important to note the distinction between disease and disability; however, as
Susan Wendell and others have argued,
324
chronic illness is not only often accompanied by
symptoms that manifest as disability in a variety of ways, but is also in itself disabling, both
physiologically and socially. That is, to be chronically ill is often to experience the kinds of
impediments to mobility, access, and normative forms of embodied presence that characterize
disability (as an experience, rather than an identity). Moreover, as Emily F. Nye has noted, the
physical and emotional stigmas particular to HIV/AIDS bring the experience of that particular
illness closer to the experience of disability (and here we might also think of Shildrick, cited in
my first chapter, and the body that is perceived by others as risky, leaky).
325

Both films are also particularly invested in representing models of dependence and care.
Dependence and interdependence are particularly key concepts for disability studies.
326
Over the

323
See: G. Thomas Couser, “Body Language: Illness, Disability, and Life Writing” (Life Writing
vol. 13 no.1, 2016).
324
See: Susan Wendell, “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities,”
Hypatia vol. 16 no.4 (2001): 17-33.
325
Emily F. Nye, “The Rhetoric of AIDS: A New Taxonomy,” in James C. Wilson and Cynthia
Lewiecki-Wilson, eds., Embodied Rhetorics: Disability in Language and Culture (Southern
Illinois University Press, 2001).
326
The idea that human beings are fundamentally dependent certainly allows disability studies to
stand outside of a neoliberal, individualizing way of thinking, but also sometimes puts disability
activism at odds with other identity struggles (such as, for example, liberal feminism, for which
independence and self-sufficiency have been central organizing concepts). Even within disability
244
course of both films, Joslin and Guibert become increasingly fragile, in need of more and more
assistance. By the end of Silverlake Life, Tom cannot leave his bed, and Mark feeds him his daily
meals, soft enough that they won’t require chewing; near the end of Modesty and Shame, Hervé
visits the beach with an unnamed friend—the only friend we really see present in the film—and
needs help putting his clothes on. As they leave the beach, his friend carries him back up the
rocky path on his back, in a scene strikingly reminiscent of Ali and Stephanie’s seaside walk in
Rust and Bone. “Disabled people,” Barbara Hillyer Davis writes, “force us to face the problem of
reciprocity, the investment in a relationship by both participants.”
327
This scene depicts a
moment of misfitting—the rocky shoreline simply too strenuous for Guibert’s dying body—but
it is also a moment of mutuality. Guibert’s friend, we can imagine, needs him, needs his time, his
love, his presence; and Guibert needs hands and feet that are not his own.

activism, the tension between the right to self-determination (in the face of institutionalization
and forced care) and the idea of mutuality, intercorporeality, and interdependence has been a
historical site of contention.
327
Barbara Hillyer Davis, “Women, Disability, and Feminism: Notes toward a New Theory,”
Frontiers: A Journal of Women Studies, vol. 8 no. 1 (1984): 4.
245

Figure 94. Hervé's friend carries him on the beach (Modesty and Shame)

To return now to Couser: he writes that “the cultural representation of disability has
functioned at the expense of disabled people, in part because they have rarely controlled their
own images.”
328
This leads him to suggest that “disability autobiography should be seen,
then...as a response—indeed a retort—to the traditional misrepresentation of disability in
Western culture generally.”
329
This applies somewhat differently to Silverlake Life than Modesty
and Shame: by 1993, the year Philadelphia took the box offices by storm, representations of
HIV/AIDS had certainly entered the American mainstream, though very few of those
representations were authored by people living with the disease and many relied on homophobic,
fear-mongering clichés. In 1990s France, on the other hand, media representations of AIDS and

328
Couser, 456.
329
Ibid., 457.
246
even of homosexuality were still relatively few and far between on the national stage, which
explains, in part, TF1’s initial reticence about screening the film.
Couser also notes, however, that disability is connected to autobiography in a more
profound way: “deviations from bodily norms,” he writes, “often provoke a demand for
explanatory narrative in everyday life.”
330
That is, whether the narrative is personal, social, or
medical, the sick body—the body perceived as different, and as different in a pejorative way—is
always accompanied by a set of questions, by an epistemological imperative imposed from the
outside. How did this happen? When did you become this way? How will you live? Will you die?.
To assert the primacy of one’s own self-knowledge in this context becomes a radical act. But at
the same time, it can easily fall prey to a dangerous set of myths and presumptions about the
nature of that selfhood, as David Mitchell suggests in his retort to Couser’s argument. Mitchell
writes:
“Instead of serving as a corrective to impersonal…representations, disability life writing
tends toward the gratification of a personal story bereft of community with other disabled
people. Even the most renowned disability autobiographers often fall prey to an ethos of
rugged individualism that can further reify the longstanding association of disability with
social isolation.”
331

Silverlake Life, in particular, manages to resist this ethos without falling prey to a kind of utopian
communitarianism: the film focuses on human networks of support, care, and trust without
shying away from the more painful and alienating elements of life with chronic illness. Mitchell
continues: “people with disabilities find their lives...inextricably tethered to the lives of
others...their lives help expose the lie of the age-old masculine fantasy of singularity.”
332
In the

330
Couser, 457.
331
David Mitchell, “Body Solitaire: The Singular Subject of Disability Autobiography,”
American Quarterly, vol. 52 no. 2 (2000): 312.
332
Mitchell, 314.
247
case of AIDS, in particular, a contagious illness that both destroyed and galvanized the
communities it most affected,
333
the fantasy of singularity is wholly destroyed. To have the virus
is to be connected, both in the most literal sense (the contact trace) and in more spiritual ways.
Community here is neither optional nor sufficient, but it is vital; it is what sustains and preserves
life.
To tell one’s own story can also be understood as a mode of confession. In a February
1975 lecture at the Collège de France, one in a series surrounding the question of the abnormal,
Foucault traces the genealogy of the confession as it relates to sexuality and its corresponding
norms (specifically within a Christian, European context). He refers to a late seventeenth-century
treatise by Habert on the nature of the sin and its consequent confession, concluding: “the
confession no longer unfolds in terms of the degree of importance of the laws of relationships
that can be broken, but follows instead a sort of cartography of the sinful body.”
334
Foucault goes
on to suggest that the “moral physiology of…the body made flesh”
335
would eventually be
incorporated (so to speak) into an emergent political and cultural model of discipline, and that
the act of confession would become the discursive site of their convergence. Put otherwise, the
confession in modern life, per Foucault, now occurs at the site where the body is read as an index
of its own morality, as bearing the traces of its sins. The AIDS body, with its extreme thinness
(in Guibert’s case) and its visible Kaposi sarcoma lesions (for both Tom and Mark), is the
confessional body par excellence, surfacing its past. And even in Ikiru, Watanabe’s experience of

333
I have chosen not to go into great detail about the history and context of HIV/AIDS here, for
the simple reason that this has already been done quite a bit, but Douglas Crimp’s “Mourning
and Militancy” (October, vol. 51, 1989) quite beautifully lays this particular truth out.
334
Michel Foucault, trans. Arnold I. Davidson, Abnormal: Lectures at the College de France,
1974-1945 (New York: Picador, 1999 187
335
Ibid., 194.
248
self-awareness through his diagnosis often takes the form of quite literal confessions: he blurts
out his news to a stranger at a bar; his friendship with his young colleague is comprised of long,
nervous silences, followed by forceful eruptions of feeling, in which Watanabe cannot but
confess his regrets, his shortcomings. But in the video-diary format of the two AIDS films,
where the cartography is of a dying body, voiceover narration and direct address bring out the
phatic element of confession, rather than its moral one. And of course, the title of Guibert’s film
clearly alludes to confession—to what can be shown, what is to be concealed, what it feels like—
as Guibert says—to be exposed. The confession, here, is not a way of admitting sin; it is a way to
assert the material reality of one’s existence, an existence in a body that has been apprehended as
sinful and disposable. And the confessions that pepper both films are confessions of struggle, of
frustration and unhappiness—I think of several scenes in Silverlake Life in which Tom, stuck in
the car because he is too weak to join Mark on their daily errands, speaks his anger directly into
the camera—but also confessions of love and longing (as in the film’s very first image). If these
are bodies whose cartographies are, literally, unstable—Mark and Tom constantly point out new
lesions to one another, the two of them as well as Guibert repeatedly have their bodies inspected,
positioned and redrawn by doctors of all kinds (and by the cameras they are constantly, visibly,
passing around and repositioning)—then their confessions, not of sin but of pain, shame, and
love, become ways of transcending and resisting the “moral physiology” of a sick and dying
body rather than confirming it.
***
In their essay “Love, Death and Videotape: Silverlake Life,” Beverly Seckinger and Janet
Jakobsen consider the forms of self-making and relation that the camera engenders in Silverlake
Life: “even beyond death,” they write, the camera “becomes a sort of magical instrument through
249
which Massi continues to speak with Joslin.”
336
If the film’s dominant technology is the
handheld camera, its techne–the ways it shapes and makes sense of the harsh and unjust world in
which it is set–is, correspondingly, one of holding: holding dear, holding on, passing around,
passing down. Seckinger and Jakobsen note: “Massi reports experiencing Tom's (spiritual)
presence a few times, but when Friedman asks why Joslin doesn't come back more often, Massi
concludes, ‘Because he's dead, and he knows he's dead.’”
337
The film dwells in the lover’s
fantasy of remaining, of crossing (and caressing) through time, but it does not allow us to forget
the great loss that gapes at its center. The subject who knows he’s dying, and the ghost who
knows he’s dead: the “hard truth,” the facticity of the clinical diagnosis, is infused with an
imaginary and magical possibility, a form of knowing that has (and needs) no basis in truth or
reality. This is what these films share with the disability documentaries I explored in my
previous chapter, despite their vast stylistic differences. Phelan notes: “a fundamental drive of
moving photography is to create a cinematic memory. The very ‘presentness’ of the image, the
full visual field that fills the screen, threatens to become dislodged from the previous image.”
338

Of course Silverlake Life is subject to the same structures of time and signification as any other
collection of edited, filmed footage, but its desire to see the invisible, the lost, the spaces between
people and the world transform the camera’s operations into something relational, a tool that
connects and communicates, that sustains a fantasy of mutuality even when it seems impossible.
To confess is also to encounter and reproduce oneself, backwards across time. And the
encounter, as I emphasized in my first and third chapters—the encounter with the self made alien

336
Beverley Seckinger and Janet Jakobsen, “Love, Death, and Videotape: Silverlake Life,” in
Chris Holmlund, ed., Between the Sheets, in the Streets (University of Minnesota Press, 1997),
151.
337
Ibid., 154.
338
Phelan, 384
250
through illness, the encounter of camera with world—is key to both of these films.
339
In
Silverlake Life Joslin encounters himself as sick subject; Massi encounters Joslin as ghost;
Friedman encounters them both as image, as videotape, as document. Each of these encounters is
fraught and confusing, suffusing the seen and known world with doubt; but the style of address
remains steadfastly kind, loving, patient. Phelan writes: “the uncanny achievement of Silverlake
Life is the creation of a cinema for the dead. What the film suggests is that the cinema for the
dead contains images of the past that flow and unfurl in the vast expanse of a time that no longer
moves.”
340
Phelan is not arguing for Silverlake Life as mere elegy; this is a film that anticipates
both the gaze of the subject who is dying and knows he is dying (Massi) and the one who is dead
and knows he is dead (Joslin), for whom normative structures of time have ceased to apply.
Joslin’s death and Massi’s escalating sickness here are never experienced in isolation from one
another, nor in isolation from the work of filmmaking itself. Like the confession, and like life-
writing, these are modes of knowing that are relational and political: they are formed in the wake
of what disciplinary, clinical gazes cannot locate or convey, they are expressions of self and of
truth that only exist in the space between speaker and listener.

339
And it is worth remembering that because of its sexual transmission (and in spite of the fact
that there are many other ways to contract the virus), HIV/AIDS (particularly during the first
decade or so of the crisis) connotes another, previous, irreversible encounter. In To The Friend
Who Did Not Save My Life, Guibert looks back, attempting to trace the origins of his own illness.
So little information is yet available to him that he must do this piecing-together on his own,
back through his memories, his memories both of illness and of sexual history. In one section of
the book, he works from 1980, “the year of the hepatitis Jules passed on to me from an
Englishman named Bobo,” until 1989: “In this chronology summing up and pinpointing the
warning signs of the disease…the physiological accidents are no less decisive than the sexual
encounters, the premonitions no less telling than the wishes that try to banish them. That’s the
chronology that becomes my outline,” he writes, “except whenever I discover that progression
comes from disorder.” (51)
340
Phelan, 383.
251
In Modesty and Shame, Guibert repeatedly interviews two of his elderly relatives, Louise
and Suzanne, on the subject of both his HIV and their own impending deaths. I am struck by his
choice not to set the camera down and include himself in the frame. Instead, he speaks to them
from behind the apparatus, allowing the camera to become the object that connects them, across
space and time.

Figure 95. Herve feeds his elderly aunt her dinner (Modesty and Shame)

This move is not simply an evocation, a premonition, of his own absence. This is the camera as
arm, as telephone, as portal: as an apparatus that is notably not voyeuristic and powerful—indeed
it is limited, limited by the body’s diminishing capacity to hold it, limited by a lack of resources
(these are not slick, high-production documentaries), limited, most importantly, by time that is
quickly running out. The camera here is a way of animating and preserving the particular
connections to others that remain after death, that allow death to be known, if it is to be known at
all.
252
Phelan writes: “the movie camera’s greatest technological achievement is that it can ease
our dying. It allows us to see what our busy vital eyes are too blind to see, and what our closing
eyes most fear losing as they cease to see.”
341
Silverlake Life opens with Mark describing, to
Friedman, the pain of being unable to slide Tom’s eyelids shut easily at the moment of his death,
admitting that he does not quite remember it; in the near-final moments of the film the camera
trembles in Mark’s hands as he sings “You Are My Sunshine” to Tom, who has died moments
before. It is impossible to watch this scene and not feel Mark’s grief, the immensity of his pain.
Tom’s physical pain has finally ended, and Mark’s psychic pain is what constitutes the image,
shaky and blurred, the choking sobs behind the camera seeming to practically dampen its edges.
This is not, cannot be, a moment of preserving life. It is a way of documenting the transfer,
evoked by Chambers, that I wrote of earlier—the moment when Tom comes to exist through
Mark, through the image, and through us. Sobchack notes that the corpse is always “physically
passive, semiotically impassive”
342
: stripped of its ability to act or to look, it becomes an object
of interpretation, a site for the projection of meaning. She also suggests that when a death is
gradual or “natural,” “the filmmaker’s ethical relation to the event of death, the function of his or
her look, is open to slow scrutiny…as the filmmaker watches the dying, we watch the filmmaker
watching.”
343
But this is not quite what is happening here. Tom’s death is not being watched,
really, or even imbued with meaning from any real distance. It is simply happening—to Mark, in
this very moment, as he becomes the bearer of Tom’s life and of his death. Tom and Mark are
the filmmakers, and they are the film; their intimacy with one another is the film’s intimacy with
its subject. There is no separation, here, to be found. What makes this scene so hard to watch is

341
Phelan, 163.
342
Sobchack, “Inscribing Ethical Space,” 287.
343
Ibid., 291.
253
not just the fact that, in showing what is so rarely shown, it brushes against the limits of realism;
it is that there is no outside, no distance. There is only pain.
Drew Leder suggests, following Elaine Scarry’s work in The Body in Pain, that “pain is
marked by an interiority that another cannot share.”
344
That is, pain is where we become aware of
what is unique to us, what is uncommunicable, what necessarily cannot be evidenced. For
Scarry, pain’s limited visibility and its subsequent unknowability are directly connected:
“‘having pain’ may come to be thought of as the most vibrant example of what it is to
‘have certainty,’ while for the other person it is so elusive that ‘hearing about pain’ may
exist as the primary model of what it is to ‘have doubt.’ Thus pain comes into our midst
as at once that which cannot be denied and that which cannot be confirmed.”
345

Pain, for Scarry, moves furtively through two fundamentally incompatible spaces: one’s own
body and the bodies of others. And the “bodies of others” can, in the most extreme instance,
expand to the nameless victims of genocide, tortured civilians in distant wars; when those bodies
are marked by racial or sexual difference, or when their pain itself is viewed as threatening or
unlikely (as it was and still is with AIDS), this unbridgeable abyss, between the felt and the
represented, between the seen and the believed, only grows. It is hard to argue with Scarry’s
account: physical pain, and perhaps even emotional pain (and the two are not so easily
disentangled), is always either mine and mine alone, or it belongs to another and cannot be truly
known. And it would seem that the flattening of the filmed subject, the transformation of the
body in pain into an even more literal surface that cannot be probed, would only exacerbate this
sense of separateness. But Silverlake Life and Modesty and Shame, I think, complicate this
epistemology of pain by emphasizing instead pain as that which can be and indeed must be

344
Leder, 74.
345
Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (Oxford University
Press, 1985), 4.
254
translated, if not shared, across bodies and technologies, pain, like love, as an individuating and
anonymizing force, pain as a site of alienation from the self that renders the question of fact and
fiction, of certainty or truth, irrelevant.
Modesty and Shame does not show us a corpse, but it breaks another visual taboo: near
the end of the film, Guibert attempts suicide. As spectators, we are soothed—if only briefly—by
the reminder, in the film’s intertitles, that he died after shooting the film, and so we know his
attempt will be unsuccessful. It is nevertheless deeply unsettling. Guibert sits at a small table in
the family home where he has come to die. He prepares a lethal dosage of medication, pours it
into a glass of water. For some time, there is no voiceover, and the only cuts are to a nearby
curtain of mosquito netting, turning softly in the breeze.

Figure 96. A suicide attempt (Modesty and Shame)

255
Then, his voiceover, another reminder that he will live, despite what it says: Seventy drops: the
lethal dose. I pour it into two glasses of water that I turn slowly on the table, my eyes closed.
How long will it take for my heart to stop beating? What will I think? To whom? Unlike Tom and
Mark, Guibert is alone in this scene, as he has been for most of the film—-even when there are
others, for example, on the other end of the telephone, we never hear them; the friend at the
beach goes unnamed, his face barely visible—but, importantly, we are here, via his camera that
is always a way of reaching for others, asked to bear witness, to keep looking. It does not matter
that we know he lives, just a bit longer, because in this moment he does not know that, is in the
throes of a physical and emotional pain so pervasive and intense that he is ready to die. Here too,
it does not matter that we cannot actually feel his pain: we are being asked to hold it. He drinks
from the two glasses. We cut to a breeze outside, rustling newspapers and leaves on the patio;
and then back to Guibert, in a different chair, eyes shut, his breathing belabored.

Figure 97. Waiting (Modesty and Shame)
256
His voiceover returns: I emerged, exhausted, from this experience—changed, even. I think that
filming it changed my relationship to the idea of suicide. And that is all he says. We cut again, to
the scene I referred to earlier, at the beach.
We will never know, then, quite what Guibert means—what, exactly, changed for him.
We cannot be certain of whether his survival of the suicide was purely accidental, or if he took
any steps to prolong his life, or if he never quite finished drinking the lethal dose. Guibert knows
he is going to die, and so the survival of his suicide cannot come from a simple impulse to keep
living. Perhaps, as for Watanabe, it comes from a desire to finish the project that will outlive
him. Perhaps, as for Mark and Tom, it comes from a feeling of something shared, a sudden
feeling of intimacy, of transfer—of communion, a kind of reciprocity or even interdependence,
with the spectator, for whom he must continue the work of dying, so that it might be fully shared.
The dead inside: tedium and bureaucracy
But there is another element to the experience of terminal illness, one much less romantic
than either love or pain: tedium, waiting, boredom. It is not by accident that Ikiru’s Watanabe is
a bureaucrat.
257

Figure 98. We meet Watanabe (Ikiru)

The events of the Silverlake Life and Modesty and Shame are primarily mundane, quotidian
events—errands, chores, endless sitting in doctor’s offices and in the car—forming a narrative
primarily around waiting and watching, around the frustrations and pleasures of daily life, even
as the specter of death looms. Near the end of Silverlake Life (and days away from the end of
Tom’s life), Mark holds up a new Medicare form to the camera, incredulous and angry.
258

Figure 99. Mark looks at the medical form (Silverlake Life)

Figure 100. The medical form (Silverlake Life)
259
This is a moment of painful irony—a long, complicated, and poorly designed healthcare renewal
form arriving in the mail right before it is to be rendered obsolete, but nevertheless in need of
immediate attention. Modesty and Shame begins with Guibert on the phone, and we come back
to this scene many times, between the acutely painful ones (Guibert hunched on the toilet with
diarrhea, receiving painful injections at the doctor’s office, reading a letter—seemingly sent by a
close relative—that blames him and his “deviant lifestyle” for his illness): Guibert simply sifting
through piles of papers, making appointments, filling prescriptions. We also frequently see him
going through his desk, panning gently over his things. What unimportant details comprise the
bulk of our lived experience? What busy work needs to be done in order to live, to be
recognized, to die? What documentation will remain? To whom will it matter?

Figure 101. Hervé sits by the phone (Modesty and Shame)
260

Figure 102. Hervé touches his papers (Modesty and Shame)

If Ikiru painted illness as a way out of bureaucratic tedium, Silverlake Life and Modesty and
Shame remind us that illness includes bureaucratic tedium, too. I think, too, of the X-ray, and of
the way that these images of bureaucracy—forms, paperwork—reveal something like a skeletal
structure, too, the invisible, dead, dehumanizing interior that holds a society to its shape.
Silverlake Life and Modesty and Shame are also profoundly un-cathartic films. We begin
them knowing how they will end and, of course, nothing changes. Moreover, the tragedies they
contain—the immense suffering of illness and the unbearable weight of death—are exacerbated
by this tedium. And tedium, the non-cathartic, brings me back to Ngai, to ugly feelings: surface
feelings, she write, that always create a kind of “discursive exhaustion or fatigue...performed
through an overdetermined self-referentiality.”
346
Ngai notes that while “reputation, permutation,

346
Ngai, 259.
261
and seriality figure prominently as devices in aesthetic uses of tedium, practitioners have
achieved the same effect through a strategy of agglutination...in the stupendous proliferation of
discrete quanta…[a] logic less mosaic than congealic.”
347
She likens the viewing experience in
these kinds of works to that of attempting to read a dictionary. in short, for Ngai, tedium and
exhaustion arise from either an endless repetition or its near-opposite: a vast expanse of endless
difference, so endless it, too, loses its legibility. Death by illness here is characterized by both
endless repetition (daily medications, weekly visits, etc.) and constant difference (the body’s
only guarantee, in terminal illness, being that it will be each day sicker than the day before, the
constant arrival of new pains, new symptoms, new lesions on the body). The wry and playful
forms of exhaustion Ngai describes in her work—predicated on a clear sense of an author’s
ability to manipulate the terms of their text, to subject the reader to a particular experience of
reading—are necessarily absent from self-representations of chronic illness and the exhaustions
it incurs. Because the author is the one who is exhausted (rather than the one who exhausts the
reader), and because the body of the author is the subject of the text, “overdetermined self-
referentiality” is not a choice but instead the starting point of the text. In this collapsing, there is
nothing left to be read.
To be released from image: the mutating body
Both Silverlake Life and Modesty and Shame understand the clinical space, then, not as a
place for encountering the truth, or oneself, but instead as the place where the subject is turned
into an image, separated from himself.

347
Ngai, 263.
262

Figure 103. Photos of Mark's lesions (Silverlake Life)

And both find a kind of lightness in this reality, a liberation from the doctor’s grim facticity:
“I’m ready for my close-up, Mr. DeMille,” Mark riffs, as the doctor take another photograph of
his lesions.
263

Figure 104. Mark photographed in the doctor's office (Silverlake Life)

When Guibert goes into the hospital for an operation, he asks the doctors if he can bring in a
mirror, in the hopes of filming what is happening, but quickly realizes that the lights in the room
will bounce off the mirror, creating a striking blue aura around his body; he decides to play with
that instead. The doctor’s office, understood here as a site of transformation, becomes rich with
creative possibility.
264

Figure 105. Hervé's surgery (Modesty and Shame)

And for all the doctor’s visits that punctuate both films, none provide us with particularly
satisfying or comprehensible images of what is going on inside Joslin or Guibert: even the charts
and scans the doctors show them are filmed, frequently, in soft focus, their pencil-scrawled,
numerical contents blurred, irrelevant. The doctors that tend to them are often half out of the
frame. In AIDS and its Metaphors, Susan Sontag’s 1989 revision of her cancer text Illness as
Metaphor, Sontag considers the ways in which the experience of AIDS, “in which people are
understood as ill before they are ill; which produces a seemingly innumerable array of symptom-
illnesses; for which there are only palliatives; and which brings to many a social death that
precedes a physical one”
348
strangely resonates with discourses of premodern medicine, in
which, she writes, “illness is described as it is experienced intuitively, as a relation of outside and

348
Sontag, 34.
265
inside.”
349
What is being privileged in these films is precisely that intuition: experience,
sensation, a trusting that the trace that is left—the pain, the footage, the lesion, the love note—
represents something invisible but profoundly real.
If the doctor’s office is then doomed to produce an unsatisfying encounter with the self,
the project of life-writing I mentioned earlier—the move to take one’s image into one’s own
hands—is less in pursuit of the “true story” and more to do with wanting to see what other selves
might emerge in the act of writing, of filming. In Ikiru, the doctor quite pointedly lies to
Watanabe—telling him he has an ulcer—and the blurred X-ray image in the corner of the screen,
which holds the truth, stays silent.

Figure 106. Watanabe realizes he has cancer (Ikiru)

349
Ibid., 35.
266
Watanabe, too, will undergo a journey in which he comes to confront and shape his own image.
By the film’s end, he is no longer the receiver of gazes (the expectant looks of his subordinates at
work, the doctor’s probing eye). He becomes, instead, the looker, seeing not only what is before
him but what is to come. And, by the end of the film, he looks out calmly from his photographic
perch upon all the others. Watanabe is not telling his own story in the same way as Joslin and
Guibert, but he, too, comes to understand that his transformation, his becoming-image, in death,
is one that, despite its totality and irreversibility, is also open, a site of possibility.
Silverlake Life is also a film about looking: the cluster of curious and judgmental gazes
that constitute the gay couple as other; later the many eyes, medical, technological and
otherwise, that at once scan the AIDS patient for visible evidence of his illness and avert their
gaze from the sick body (at one point, while Mark and Tom are on vacation, footage of them
laughing happily in the pool are intercut with Mark informing the camera that the woman who
owns the resort they are in has asked him to keep his shirt on in the pool so that other vacationers
will not have to see his Kaposi sarcoma lesions); and finally the filmmaker’s fantasy of multiple
cameras, of seeing and recording the events of his own life in a way that surpasses the embodied
gaze. One of the earliest scenes in the film is of Tom getting an MRI, after which the camera
pans back and exposes another camera in the doctor’s office, mounted on a tripod. The room is
full of unrequited gazes, of looking and not quite finding—everything has been made visible
except for the disease itself, the lived experience of it, the lived experience of a body we know
no longer exists.
Watching Modesty and Shame, one is struck by Guibert’s immense loneliness. From the
film’s opening, in which Guibert sits on the phone talking to someone—we never find out who—
about test results, making an appointment with a doctor, getting his medication, it is clear that
267
Guibert’s experience of illness is marked by a great solitude, by the rest of the world held
painfully at bay. We are aware both of Guibert’s anonymity to his medical interlocutors and his
solitude in the home. But the camera’s presence matters, here and elsewhere. The same is true in
Silverlake Life: fter Tom dies, the film continues. One of its most moving and painful scenes
comes here, near the film’s end, when Mark receives Tom’s ashes. No one else is around; Mark
places the camera down and walks over to the cardboard box. He lifts the bag of ashes out of it,
which is surprisingly large and heavy—Mark’s own increasing frailty, as his own illness
progresses, is clear here—and slowly, clumsily, tries to pour the ashes into an urn. The ashes
spill unevenly over the crumpled plastic lip of the bag. “You’re getting everywhere, Tom,” Mark
mutters, his grief and ours only amplified by the absurdity of the gesture, the impossibility of
doing it neatly.

Figure 107. Mark holds Tom's ashes (Silverlake Life)
268
What of Tom is spilling onto the floor, never to be retrieved? What does it matter? What does
matter matter, the material remnants of the dead? We know, like Mark does, that this pile of grey
ash is not Tom, even if it also is (much like the X-ray); that Tom is present in the scene only
insofar as he is spoken to by Mark, and is present also in Mark’s decision—perhaps even his
need—to film this moment, to continue their shared practice. Tom has been dead from the start
of the film, both in the strictest narrative sense but also in that the film is occasioned by his
dying. And so to film here, as throughout, is not so much to “keep Tom alive” (and it matters too
that Mark knows his own days are numbered) as it is to let Tom die, that is, to fulfill or at least
explore the fantasy of a truly honored death, to refuse to look away from illness even when it
takes the ill body away from us.
I think I’ll make it all the way: death and/as time travel
Eli Clare writes that the fantasy of cure is a fantasy of time travel: a longing to return to
the past, before illness, and for a viable future.
350
The experience of terminal illness is also one of
time travel, albeit of a different sort. The end suddenly appears inside the present moment. There
is a known future ahead that transforms the now into the before. The time that one has left is
lived twice: first in its present unfolding, but also, simultaneously, as a prelude to an ending that
has not yet happened. This is in part why the diary format is so important to Silverlake Life and
to Modesty and Shame: it is the act of turning the present into a knowable past for the future.
And the diary is at once entirely intimate and, thus understood, entirely for others. The recording
of the act of dying is the subject’s own transformation from author to text, a text that will
preserve life, and that in so doing allows us to understand life beyond the terms of normative
embodiment, and beyond the individual. Guibert describes himself, too, as a time traveler; he

350
Clare, 57.
269
says in voiceover that he has somehow jumped from age 35 to 85, as weak and near to death as
an old man. And Joslin, who often speaks directly into the camera—sometimes to us, sometimes
to Mark—is, to use Mark’s own phrasing, a time traveler who knows he’s traveling, who knows
he exists in many places at once. Much as in the films I wrote about in my first chapter, the sick
subject here becomes a cinematic subject, cut up and cut off, crossing through time, legible only
through others. But here, unlike in Cure or Safe, this is a choice, a mode of resistance to a world
that demands (or enforces) legibility, coherence, individualism, linearity.

Figure 108. Tom next to a photograph of himself with Mark (Silverlake Life)
***
I want to close this chapter by considering three brief sequences that parallel one another across
these films, each of which, I think, can help clarify their shared strategies for thinking about
illness, death, cinema. First: the hat. In Ikiru, Watanabe’s frivolous purchase of a new, stylish hat
270
comes early in his journey of self-discovery, during a long night spent with a stranger he has just
met in a bar.

Figure 109. Watanabe's new hat (Ikiru)

Watanabe eventually dies swinging on a swing in the playground he has had built, in the freezing
cold. Early in the film’s funeral sequence, someone brings the icy hat in, from outside: it is all
that remains of him. In a signature shot, Kurosawa enframes the hat within the window, seen
from the outside. The hat is the last remaining trace. Here too we have a microcosm of the entire
film: the image that speaks to what has been erased from it, that both contains the truth of
Watanabe—the sense of self he found in his last months—and tells us nothing.
271

Figure 110. The hat after Watanabe's death (Ikiru)

In Modesty and Shame, near the end of the film, when Guibert has traveled to the south, he, too,
wears a hat as he sits outside, reading aloud, eating fruit, enjoying the sunshine, observing the
passing animals and insects with whom, he says, he suddenly feels a new kinship.
272

Figure 111. Herve reads outside in his hat (Modesty and Shame)

Shortly before his suicide attempt, the camera lingers on the hat, alone.
273

Figure 112. The hat on the dining room table (Modesty and Shame)

Ikiru and Modesty and Shame here both use this relatively simple metonymic device to force us,
as viewers, to confront not only the materiality and irreducibility of our grief but the
incompleteness of all images, The window-pane, the mirror—each can only hold so much. The
hat becomes tragic not because the person who wore it has died but because it—the hat—must
remain, and because we must remain with it. And this brings me to my second set of images:
Right before the end of Ikiru, we see an image of the swing set in the playground, where
Watanabe sat not long ago, the swings still swinging back and forth.
274

Figure 113. The empty swings (Ikiru)

In the final moments of Modesty and Shame, Guibert films white sheets strung up on a
clothesline, billowing in the wind. Much as in my first chapter, these are moments of doing—of
movement—without agents, without people.
275

Figure 114. A clothesline in the wind (Modesty and Shame)

We can of course think here of the uniquely cinematic capacity to record nonhuman activity, the
thrilling realism of the “wind in the trees.” And these films, too, are forced into the discomfiting
self-reflexivity provoked by the encounter with illness and death.. But unlike spill’s contagious
foreboding, these images speak instead to what outlasts us, what remains after we are gone, what
it is that we set in motion, what kinds of time overlap with one another: all the world’s starts and
stops, alongside one another but not together. The sheets here recall the swaying of the curtain
that Guibert cut into the footage of his suicide attempt: the world, still, impossibly, going. These
are images of process without need of origin or destination. Which brings me, finally, to my final
images. Both Modesty and Shame and Silverlake Life, curiously, feature brief sequences of
marathon runners. In Modesty and Shame, they are seen from above, from what appears to be an
apartment window:
276

Figure 115. A marathon seen from above (Modesty and Shame)

In Silverlake Life, Tom and Mark are on the ground, watching the runners up close:
277

Figure 116. A marathon seen from the ground (Silverlake Life)

Why the marathon—a flagrant display of health, a celebration of the body’s super-ability and
endurance, a journey undertaken only for its own sake, only to show that it can be done? These
scenes are tinged with sadness, the sadness of the onlooker who cannot join, but they also reveal
a lingering curiosity on the part of these filmmakers, a desire to be among people, to locate
something shared. In terminal illness we find ourselves at the very edge of our being, but it is an
edge that is also the selfsame edge at which we encounter others.
As Joslin’s camera pans across the crowd, it eventually pauses on a woman jogging by,
and Joslin asks her whether she thinks she’ll make it to the end of the race. “With all the
wonderful people and entertainment,” she smiles, “I think I’ll make it all the way.” Joslin is not
present in this scene: he remains, for a moment, on the side of the “wonderful people,” the
people watching, entertained, who become, themselves, entertainment, nourishment: a soothing
balm for the runner’s aching body, a way to make it to the end.
278
Conclusion

The body is irreducible difference, and it is also at the same time the principle of all
structuration.

-Roland Barthes, Roland Barthes by Roland Barthes
351

We will all die: that much is certain. In my first chapter, I wrote about the kinds of
intuitive, half-formed feelings that alert us to oncoming illness. In the final one, I turned to the
feelings that radiate outward beyond the dead body and its image, beyond the image of one’s
own corpse, “always arriving from within.”
352
The particular connection of feeling to time—to
the image in time, or, put differently, the notion of feeling as that which transforms the
experience of time and vice versa—has been central to film studies since Kuleshov’s famous
experiments (which of course, famously, included an image of a corpse). The questions I ask are
not new—they are pointedly not new. And so why ask them? Because across my research over
the past seven years I was struck time and again by the degree to which bodies that were sick,
incomplete, hurting, hybrid, mute (I could go on forever) cropped up in film theory’s
foundational texts (and many more recent theoretical interventions) without the slightest gesture
towards actual disability and illness as phenomena in the world; and because the work I read by
disability scholars writing about film tended largely to think about what ill and disabled
characters represented without necessarily engaging with how that representation came to be,
came to signify. I hope that I have begun, in these pages, to bridge that gap, to insist that the so-
called sick body is not an abstraction and that it is this very fact that makes such a rich site for

351
Roland Barthes, Roland Barthes, trans. Richard Howard (Macmillan, 1977), 175.
352
Leder, 144.
279
theorizing, for understanding how the body comes to be abstracted, comes to be seen, known,
read.
In the introduction to this text I invoked Rosemarie Garland-Thomson’s concept of the
misfit, the subject encountering the “thingness of the world,” and throughout this project I have
considered the various “thingnesses” of the body: its materiality, to be sure, but also its
immersion in the world and its inherent processes of change, its ongoing and insistent wholeness,
its complexity and heterogeneity—the body, Deleuze and Guattari write, is “populated with
multiplicities.”
353
What I hope is clear here, particularly in my study of Deleuze, Bazin, and
Baudry, is that the fact of simultaneous wholeness and multiplicity is precisely what makes the
film image so elusive, and what also makes it so connected to “the body,” a term which, as I
have demonstrated here, is necessarily undefinable, despite its seeming simplicity. Bruno Latour
opens his 2004 article “How to Talk About the Body” with a brief anecdote: he once asked a
group of conference attendees to write down the antonym of the word body. Some, he notes,
wrote dead; others, unaffected. Latour is especially interested in this second term: to have a
body, he suggests, is to “learn to be affected...moved, put into motion by other entities, humans
or non-humans.”
354
This is the other key site of convergence, for me, of body and cinema that
demands that we turn to illness and disability studies: the question of affect, of vulnerability and
of motion, a motion, like the spill of water, the gesture of the whale’s fin, the rustling of plants,
sheets billowing in the wind, that speaks to life and animacy beyond the confines of the human.
The films I have explored in these pages open up all kinds of without: virus without cause, life

353
Gilles Deleuze and Felix Guattari, Anti-Oedipus: Capitalism and Schizophrenia, trans. R.
Hurley (London: Athlone Press, 1984), 30.
354
Bruno Latour, “How to Talk About the Body? The Normative Dimension of Science
Studies,” Body & Society vol. 10, no. 2 (2004): 205.
280
without breath, image without figure, suicide without death. They insist that these, too, are
possible cinematic and bodily configurations—not just possible, but real, happening now.
I do not mean to suggest, or risk suggesting, that the universality of human need, that the
incompleteness of every body, means we are somehow all disabled (or, correspondingly, that the
wholeness of every body means we are all abled). Quite the contrary: some bodies are in pain;
many others are subjected to ongoing dehumanization, oppression, marginalization, abuse. In
order to truly move towards a more equitable world, however, I believe that we must begin by
recognizing the co-constitutive nature of our embodiment and of our semiotic processes, the
degree to which our being—our becoming—is shared, lives before us, outside us, after us. As
film scholars, we must return to our most foundational ideas of the cinematic real, of cinematic
time, and ask ourselves where and how we have relied on disabled bodies to carry the burden of
signification. Only then can we begin to understand our own processes of looking and reading
anew.
In the essay I cited in the epigraph to this manuscript’s introduction, Virginia Woolf
writes that for the invalid, “the world has changed its shape…the whole landscape of life lies
remote and fair, like the shore seen from the ship of the sea.”
355
Elaine Scarry writes that pain is
“experienced spatially as either the contraction of the universe down to the immediate vicinity of
the body or as the body swelling to fit the entire universe.”
356
Bill Albertini has written that in
narratives of contagion, “differences between the cell, the body, the room, the region, the nation,
the continent, and the globe all collapse…[it is] a world in which scale no longer functions.”
357

355
Woolf, 35.
356
Scarry, 35.
357
Bill Albertini, “The Geographies of Contagion,” Rhizomes no 19 (2009):
http://www.rhizomes.net/issue19/albertini.html#_edn3
281
Read together, these very different texts reveal the degree to which, as I suggested in my
introduction, sickness has a particular formal quality, a way of changing shape, space, scale—a
way of altering the real not via its content, but its form. What I hope to have demonstrated across
these chapters is that cinema’s own relationship to form and meaning is laid bare anew when it
faces illness, contagion, bodily pain, suffering. After the past several years, after feeling the
world shrunken to the size of the home and the computer, watching corrupt politicians exploit
people’s fears of scientific knowledge they do not understand, watching the numbers of deaths
rise beyond the comprehensible, I no longer need to do much to convince my reader that sickness
collapses these mediated boundaries, troubles our sense of scale and the real, nor that it is as
subject as anything else to the structures and structural inequities in which it comes to bear. But
it is also perhaps increasingly clear, far beyond the space of the academy or of the cinema, that
we don’t quite know what it means to be sick, or to be well. And in that case, this work has only
just begun.

282
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Creator Ben Ayoun, Emma Liane (author)

Core Title Sick cinema: illness, disability and the moving image

School School of Cinematic Arts

Degree Doctor of Philosophy

Degree Program Cinematic Arts (Critical Studies)

Degree Conferral Date 2022-08

Publication Date 07/26/2024

Defense Date 06/06/2022

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag affect theory,AIDS cinema,apparatus theory,contagion,death,Disability,disease,documentary theory,film philosophy,film theory,memoir,OAI-PMH Harvest,phenomenology

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Lippit, Akira Mizuta (committee chair), Modleski, Tania (committee member), Renov, Michael (committee member), Seiter, Ellen (committee member)

Creator Email benayoun@usc.edu,emmalbenayoun@gmail.com

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