A Living Community: Theorizing Immunity from the Autoimmune

Ohad Ben Shimon

Qui Parle: Critical Humanities and Social Sciences, Volume 29, Number 2,
December 2020, pp. 285-307 (Article)

Published by Duke University Press

For additional information about this article

https://muse.jhu.edu/article/782716

[ Access provided at 22 Feb 2021 05:36 GMT from CNRS BiblioSHS ]

A Living Community
Theorizing Immunity from the Autoimmune

ohad ben shimon

This article analyzes the concept of immunity and how the scientific
discipline of immunology has been constructed since the end of the
nineteenth century until today as a “science of self/non-self discrim-
ination,”1 leaning on unnuanced ontological foundations that fortify
and preserve the self, while setting in motion a naturalized teleology
for dominating the nonself (other). In particular, I focus on my expe-
rience of living with an autoimmune condition and how living with
such a condition shapes an examination of immunity as it has come
to function in the practices of immunobiology and political philoso-
phy. This theoretical counterargument diverges from politico-
philosophical or immunobiological theories of immunity, which
tend to metaphorize or essentialize what the concept of immunity
comes to inhabit. Instead, I take a situated bodily approach to theo-
rizing immunity, understanding immunity as a lived experience
rather than a metaphorical or essential state.
My reason for exploring the concept of immunity and its rele-
vance for contemporary politico-biological life is twofold. The impor-
tance of unwrapping what within the concept of immunity has been

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doi 10.1215/10418385-8742994 © 2020 Editorial Board, Qui Parle
286 qui parle december 2020 vol. 29 no. 2

encoded on a biological-political axis is closely related to the resur-

gence of questions around the body. Such a concept has become a
focus of attention and heated debate in the study of what Michel
Foucault described as “life in general,”2 or what Giorgio Agamben
calls “the simple fact of living common to all living beings (animals,
humans, or gods).”3 As feminist anthropologist Emily Martin points
out, the centrality of the body in contemporary Western social forms
is also closely connected to a transition that occurred toward the end
of the twentieth century, from “bodies suited for and conceived in
the terms of an era of Fordist mass production to bodies suited for
and conceived in the terms of the era of flexible accumulation.”4
Martin ties this transition to global capitalism’s paradigmatic reor-
ganization of social life in an industrial context of “widespread fear
of mortal loss of employment, status, housing and health.”5 I follow
such lines of thought that reconsider how the notion of “the
body”—with its bodily immune system—has been constructed and
used for certain ends and how these uses may be resisted. In other
words, immunity in the disciplinary practices of both immunobiol-
ogy and political philosophy often comes to demarcate and dialecti-
cally establish the self as what dominates, controls, and polices the
nonself (other) in order to fortify the former’s central, autonomous,
and rational position. As a singular autoimmune body, I seek to
problematize immunity’s role in this trope; this article rereads or rec-
onceptualizes immunity and its dominant theoretical conceptualiza-
tions. In that sense, the reading of immunity I elaborate is more akin
to a mode of being methodologically autoimmune in the world in
order to establish an affirmative, material, and ethical autoim-
mune response-ability, which cannot, or should not, too easily be
put to work.
Speaking from my situated position of a body living with an auto-
immune condition, I would like to claim that the axiomatic hostility
that exists between what an organism comes to recognize as itself
and what it comes to recognize as other—which is at the root of
organismic identity in immunological theory—is also evident in so-
cial theories of political philosophers who have read or used the con-
cept of immunity as a persuasive trope to develop their theories.
Writing alongside scholars and activists of disability studies, I align
 Ben Shimon: A Living Community 287

my argument along a similar embodied critical approach. In other

words, by focusing on what my own body has taught me over the
years of living with an autoimmune condition, I resist the temptation
to reductively read immunity solely as a metaphor—to do so seems
to miss how its nuances and complexities might allow for a more
capacious theorization of the body. I prefer to read immunity
through my bodily experience not because I wish to defend or isolate
my own understanding of immunity, by any means, but because liv-
ing with autoimmunity has on a very material level revealed that the
supposedly protective threshold between self and other is more often
porous, complex, and changing.
As a focal point of my revision of immune theory, I explore the
Italian philosopher Roberto Esposito’s extensive biopolitical ac-
count of immunity that in its canonical status has dominated the the-
orizing of immunity as a mode of analyzing contemporary culture
within social theory.6 Here I focus on how Esposito’s account aims
to break through the border between biology and politics, self and
nonself, inside and outside, to reveal what individuals share in com-
mon. I address how my own autoimmune condition, on shaky
epistemic-ontological grounds, can help move beyond a self-
protective method of theorizing, while the biopolitical account of Es-
posito is limited by its reliance on a metaphorical construction of
immunity. As the experience of dealing with clinical immunologists
has taught me, and as the cultural theorist Ed Cohen, who has him-
self lived with an autoimmune disease for over forty years, further
points out, “no treatments yet exist[ed] that . . . [could] mitigate ei-
ther whatever triggers autoimmune etiologies in the first place, or
whatever enables them to persist thereafter.”7 The mysterious case
of autoimmunity I was confronted with “actually name[d] a known
unknown whose (un)knowability continues to befuddle even the
best funded attempts to contain it” (“Self, Not-Self,” 29). Therefore,
slowly but surely, I realized that I had to learn to develop my own
understanding, resistance/tolerance, and way of dealing with the
complexities of a known unknown my body presented me with, as
an alternative to what the biomedical industry or discipline had in
store for me.
288 qui parle december 2020 vol. 29 no. 2

After exploring how the categorical dominance of self over non-

self can be problematized by reading Esposito’s biopolitical inquiry
alongside my own bodily experience, I seek to challenge and extend
biopolitics’ conceptual philosophical ecosystem, laying the ground
for an ecological understanding of immunity that looks at the inter-
actions of the self with its environment. Here I explore the work of
the immunobiologist turned philosopher of science Alfred Tauber on
immunity.8 According to Tauber, the disruption of the self/nonself
discriminatory model of immunity, which gave immunology its
organizing power until the end of the twentieth century, could simply
no longer “account for the full array of immune activities” (Immun-
ity, 10), thus losing its epistemological and ontological grip as an
organizing principle or paradigm. Departing from the theoretical
work of Tauber, who tries to redraw the disciplinary boundaries
of immunology as an environmental rather than clinical science—
“where the latter is defensive and the former both defensive and
tolerant/assimilative” (pers. comm., May 19, 2020)—I aim to show
how his suggested new discipline of eco-immunology can help ad-
dress the more open-ended, nuanced, and ambivalently constituted
spectrum of immune responses beyond their use as a trope. In this
new conceptual reconfiguration, it is the tolerance of the immune
system that is emphasized, and immunity functions as a mediator
of balance. Tauber’s conceptual evolution of immunity is critical
for my own theorizing of immunity from an autoimmune perspec-
tive; through it I come to terms with the concept of immunity on
more ambivalent, relational, and, at times, paradoxical grounds.

Chronic Autoimmune Disease

My exploration of immunity is primarily influenced by my experi-
ence of synovitis acne pustulosis hyperostosis osteitis (SAPHO) syn-
drome, a chronic autoimmune disease with which I was diagnosed in
the beginning of 2013. I was told by my doctor that my body had
mistakenly started to attack itself. According to the explanation of
the doctors, my immune system was overly active, crossing a normal
and healthy threshold of defending itself. My diseased bodily auto-
immune symptoms included severe joint and skeletal muscular pains,
 Ben Shimon: A Living Community 289

mainly in my shoulders, chest, and neck, and debilitating pain in my

lower back, spine, and pelvis. My left collarbone, following a period
of inflammation and pain, slowly started to mutate and grow out of
place in an odd and unexpected form. In the mirror I saw a pointy
lump that worried me, in case this alien-like appearance should hap-
pen in other bones in my body. In addition, I was dealing with a se-
vere pustulosis skin reaction on my palms and on the soles of my feet
that would flare up and surface in a three-week cycle. Blisters full of
pus covered my palms and the soles of my feet. Not only was it a
rather visually disgusting manifestation, but these blisters populated
my palms and soles in an invasive and colony-like fashion, to the
extent that I could not touch my immediate environment. I could
not step on anything with my feet or grab anything with my hands.
I slowly became more alienated from this untouchable environment,
which created an additional impression that something beyond hu-
man was growing on the border of my body, my skin.
The first few meetings with doctors took place in a public hospital
in The Hague, Netherlands, where I was offered a mixture of immu-
nosuppressant drugs such as cortisone to reduce the overactivity of
my immune system, bisphosphonates to maintain bone density, and
steroid creams to suppress the lesions on my hands and feet. The
doctors also suggested the nonsteroidal anti-inflammatory drug Ar-
coxia and opium-based pain relievers to temporarily reduce the pain.
Afterward second- and third-opinion consultations with doctors in
different countries became a priority, although all of them resulted in
a similar, albeit opaque, diagnosis. I went online to seek forums, sup-
port groups, medical journals, and other platforms in my quest for
further information and community, though many of these became a
fertile ground for paranoia and anxiety. I spent most of the spring of
2013 struggling in and out of bed due to the severe pain in my joints
and skeletal muscles while attempting to hold on to my rather pre-
carious freelance teaching job in a high school.
Inhabiting a body whose immunological functions required sup-
pression complicates the basis of the science of immunology as a sci-
ence of self/nonself discrimination. These nonself, foreign entities or
agents take the form of either life-threatening bacteria or viruses, in
the case of biological immunity, or—in the case of modern political
290 qui parle december 2020 vol. 29 no. 2

discourse—invaders or enemies from without and/or within that

threaten the political order of the sovereign nation-state.9 To explore
how immunity’s operation within political philosophy ontologically
establishes self and nonself, I turn to Esposito’s biopolitical account
of immunity.10 Although my account later attends to its limitations,
Esposito’s biopolitical exploration of immunity is crucial for my
intervention, as it gestures toward more affirmative notions of the
border between the self and the nonself. Simply put, the lived reality
of autoimmunity can complicate the metaphorical uses of immu-
nity.11 Instead of a philosophical or immunological methodological
approach, I wish to develop an autoimmune methodology that is
based on my experience of living with an autoimmune condition
and that seeks to embody, rather than metaphorize, the theoretical
stakes of current immune theory.

Rereading Roberto Esposito: Immunity and Community

Esposito, like other biopolitical thinkers after Foucault, seeks to

warn of the invasive grip of biopower’s political and social power
over biological life.12 Yet what distinguishes Esposito is his attempt
to envision an affirmative notion of Foucault’s life-in-general princi-
ple, opening up the deadlock between life and politics through a
third mediating point of contact between immunity and commu-
nity. This, according to Esposito, “can happen in mutually opposing
forms that bring into play the very meaning of biopolitics: either the
self-destructive revolt of immunity against itself or an opening to its
converse, community” (Immunitas, 141). In Esposito’s politico-
philosophical thought, immunity is imagined to be positively consti-
tuted as an affirmative form of biopolitics. Importantly, his account
of immunity traces the historical dimension embedded in the concept
of immunity and simultaneously essentializes it. Paradigmatically,
Esposito does not renounce the historical materialist dimension
that might be embedded in the concept of immunity. Instead, he
acknowledges that in “various advances in genetic and bionic tech-
nology: rather than an immutable and definitive given, the body
is understood as a functioning construct that is open to continu-
ous exchange with its surrounding environment” (Immunitas, 17).
 Ben Shimon: A Living Community 291

Esposito’s account of immunity aims to break through the border or

deadlock between biology and politics and open it up to look at what
individuals share in common. To traverse this border between biol-
ogy and politics, self and nonself, Esposito explores the shared ety-
mological root of the Latin word munus (immunity, community) to
encapsulate both immunity and community as an affirmative dialec-
tical dyad. First working through the juridical interpretation of
immunity, the word munus refers to “an office—a task, obligation,
duty” that one performs or “a gift that is given—rather than a gift
received” (Immunitas, 5). Once this gift is given, it must be paid
back. In Esposito’s legal immunization imaginary, the juridical con-
tract of munus establishes an “‘obligation’” (Immunitas, 6) of gift
giving within the community that precedes the act of gift receiving.
In other words, what consequently unites community members is
not foregrounded by a property-like sense of belonging to “more
than one, to many or to everyone” (Communitas, 3), but is estab-
lished by a reciprocal “transitive act of giving [with a sense of]
loss, subtraction, transfer” at its core (Communitas, 3). In that sense,
the community is united not by what it has in common but by what
its members lack in common—a lack expropriating them of their
own subjectivity. The common according to Esposito’s etymological
operation is thus “not characterized by what is proper but by what is
improper; [setting in motion a] voiding . . . of property into its neg-
ative” (Communitas, 7). In this mutual exchange, the immuni, de-
fined negatively by what they negate or lack, are those individuals
or members of the community who were not given such a gift (mu-
nus) in the first place and therefore do not have to give anything back
in return. Thus, in Esposito’s account, the giving community acts as
the driving force of what constitutes conviviality, while the immuni
serves as the exception to that rule.
In returning to my experience of living with an autoimmune con-
dition and the environment I was interacting with when the disease
broke out, I would like to reflect on Esposito’s formulation of com-
munitas as a community that shares a lack or void and that in their
“transitive act of giving” (Communitas, 5) void themselves of their
subjectivity to form a community. Here I focus specifically on the no-
tion of a community of workers, or a workplace community, in
292 qui parle december 2020 vol. 29 no. 2

which the main act of giving—or sacrifice—is the fulfilled obligation

to be physically at work with one’s body. In a very material sense, the
bodies in the workplace community, due to their physical presence at
work, owe something to which they were always already the bene-
ficiaries, namely, their bodies. Even in situations that require less of a
physical manifestation or presence of working bodies at the work-
place, the contractual conditions of a working community remain
the requirement of a working productive body to be available to
work. The availability of a body to work—whether at the physical
workplace or merely at work—still gives in to the obligation of mak-
ing one’s body available to work for the employer. Simply put, the
availability (giving/gift) of work is given in return for an availability
to work. I became conscious of the physical experience of being at
work with my body as my autoimmune disease worsened during the
spring of 2013 while I was working irregularly at a high school and
trying to negotiate a flex contract (zero-hour contract) for the fol-
lowing academic year. In the midst of the disease, entering the work-
place assisted by an umbrella as a support stick or crutch, disguising
the pustules on the palms of my hands with gloves whenever I could,
putting up with the pain in my joints and bones without going pub-
lic, and lying to colleagues when asked about my limp for fear of los-
ing the chance to get my contract renewed, I managed to trick-secure
my contract for the following year. This secured, not-so-secure, zero-
hour contract entailed no rights or benefits for pension or health care
and no regular-wage salary payments when the school was closed.
I spent that summer in bed, and once the academic year resumed, I
went to school on crutches. The reason for the crutches was that at
some point during the summer the recurrent pustules on the sole of
my left foot cut it open, rendering the foot unusable. In response to
concerned inquiries from my colleagues and the school nurse, and in
fear of raising any suspicions regarding my incapacities that might
risk my working contract, I said that I had stepped on a piece of glass
on the beach during the summer vacation. Returning home, I would
climb the steep Dutch staircase to the second floor on my hands and
knees to return to bed. Pulling my crippled, disabled body through
the steep staircase made me aware of how spatially challenged and
restricted I had become. The discomfort I experienced in getting my
 Ben Shimon: A Living Community 293

body to the workplace and bringing it back home felt like burden-
some additional work that I needed to accommodate by myself. I had
to use the crutches until the end of 2013, when the sole of my foot
cleared. During these three months the school nurse started to doubt
my cover story and regularly asked if she could have a look at my
foot. To these recurring encounters with the school nurse, I responded
that it was not necessary and that I would prefer not to expose
my wound, as it was still healing. In complicating Esposito’s giving-
community form of conviviality, the munus (gift) of care that the
nurse was attempting to give to my discomforted foot could not eas-
ily be received on my behalf as a comforting or alleviating gesture.
My attempts to hide what on the workplace floor would be re-
garded as a nonfunctional body further complicates the genealogy
of munus on which Esposito’s understanding of community de-
pends. While Esposito’s legal interpretation of munus as office,
task, obligation, or gift can be reconciled with an idea of an able
body that is needed on the workplace floor, I was afraid that my
other, more hidden, autoimmune and far less able body would risk
my chances of securing another teaching contract. I could not give in
to the school nurse’s request to expose the flesh of my foot, even if the
gesture came from a place of care. In other words, while it was evi-
dent that the gift-giving productive capacity or task of my able body,
once it was given, would reciprocally result in the gift of a wage, I
was not so sure that the gift of an unpredictably unruly and disabled,
nonproductive, autoimmune body would reap the same beneficial
results, given that I also had no social security contractual guaran-
tees included in my zero-hour contract. My immunological insecu-
rity at the workplace therefore only increased my social and financial
insecurity. Even with the best of intentions to put my body to work,
the experience of living with an autoimmune condition made it clear
to me that my body was not always ready to follow its own orders.
From the bodily situation of the autoimmune, I struggled to define
what inside and outside, self and other actually meant.
Almost a year of dealing with the autoimmune disease through
conventional medicine only suppressed the symptoms slightly; it
did not address the core disease my body was experiencing. It was
also clear to me from my first meetings with doctors that from an
294 qui parle december 2020 vol. 29 no. 2

immunobiological perspective, the question of healing was not on

the table, since, while the symptoms of an autoimmune chronic con-
dition may retreat, shift from short-term and acute to chronic and
long-lasting (or the other way around), or go into partial remission,
they will never go away. In other words, the crash course in immu-
nobiology through which my doctors somewhat patronizingly
indoctrinated me could not “encompass healing as one of its pre-
cepts, because it conflates healing” (“Self, Not-Self,” 40), or a body’s
return to health, with an immune system that is tolerant of itself as it
negates harmful foreign pathogens/others. A coherent and logical
explanation of why a body or immune system would unexpectedly
or illogically attack itself was unfortunately not on the syllabus of
this crash course. A more affirmative explanation of autoimmune re-
sponsivity that might help me theorize and thus live with my body as
an organism with an autoimmune responsive capacity to interact
and evolve with itself and its environment—rather than a chronic
everlasting condition of impediment—could not even be imagined.
Although it was becoming clear that I needed to find more accom-
modating types of care, it was not so clear what kind of a community
could actually care for and about my autoimmune bodily experi-
ences, since “paradoxically, autoimmune issues and experiences
are also rendered invisible within much of the disability commu-
nity,” as Beth Ferri argues.13 Perhaps it is the normative clinical for-
mulation of an autoimmune body as a body that unexpectedly and
“rebelliously” turns on itself that further warrants autoimmunity’s
pathologization and invisibilization. Rather than seen as a threat
to others, autoimmunity is seen as an internal and private conflict
or matter. Or perhaps it is the many cultural uses (and abuses) of
immunity and autoimmunity as persuasive tropes that end up doing
a disservice to real lived autoimmune experiences. Ferri further elab-
orates: “Confounding both biomedical and social model definitions
of illness and of disability . . . , people who live with autoimmune
illnesses are also underserved by the medical community, denied so-
cial security and disability benefits and workplace accommoda-
tions.”14 In that sense, like Esposito’s immuni—the person who
was not given a gift or munus in the first place—living with an auto-
immune condition and without an idea of who or what could help,
 Ben Shimon: A Living Community 295

instead of giving something in return, I felt I had to find a way to

practice a form of self-care. In other words, more than giving some-
thing to my body, this act or notion of self-caring for my autoim-
mune body meant trying to tolerate it by gradually learning to re-
move the physical and mental obstacles laid out daily on my path
toward recovery. Thus, instead of treating the professional medical
care of the school nurse as an authority on my body or finding solace
for my autoimmune body in other caring communities, I started fig-
uring out ways to ease my encounter with it.15
Esposito’s biological semantic reading of immunity sharply dis-
misses the popular political metaphors lurking behind the biological
definition of immunity as “the refractoriness of an organism to the
danger of contracting a contagious disease,” which in a reactionary
fashion “presupposes the existence of the ills it is meant to counter”
(Immunitas, 7). Instead, Esposito aims to establish an affirmative
form of biopolitics that is thought through the munus of community.
In this affirmative biopolitics, individuation takes place “through a
bios that is inscribed in the flesh of the world.”16 Although Esposito
here seems to alternatively allude to a materialist, almost more-than-
human or not-entirely-human principle of organismic life and con-
cept of immunity and community, the concept of the “flesh of the
world” remains elusive. Problematically, Esposito’s allusion to the
material dimension of the body in the concept of flesh relies too heav-
ily on immunity and flesh as highly potent tropes, which although
highly persuasive, miss getting at or addressing the ontological
and epistemological systems that ground, command, and order
this discourse. Thus, in my theorization of the body from an
autoimmune-embodied perspective, I try to show how immunity is
more than just an attractive biological or philosophical metaphor
and how my lived and at times very alienating and destabilizing
experience can come to problematize the ontological and epistemic
foundations that ground such a metaphorical use of the concept.
Fundamentally, I would like to claim that Esposito’s cultural crit-
ical investment in developing a biopolitical account of immunity has,
to a large extent, depended on a definition of flesh that metaphorizes
immunity without accounting for the actual material and bodily
expressions that concepts such as flesh, life, immunity, and body
296 qui parle december 2020 vol. 29 no. 2

can and almost always do enact in the arena of everyday life. Rem-
iniscent of the critique within disability studies17 of the opportunistic
misuse of disabled bodies as tangible metaphors that ground literary/
narrative accounts that would otherwise be deemed too abstract,
Esposito’s disembodied use of metaphor puts to work the corporeal-
ity of the body to function as a trope in order to drive home his social
theory, losing the experience of the living (not always able to per-
form) body on the way. Additionally, the biomedical immunological
axioms that Esposito alludes to, and from which he extrapolates his
social theory, are still based on an understanding of the immune self
as defensively and protectively constituted.18 In contrast, as evolving
immunological theory suggests, autoimmune processes within the
body are a matter of a “normally” functioning living body rather
than an anomaly that rises within and “against” the body. Alfred
Tauber, critical of the way immunity has been co-opted by cultural
critics, points to how the metaphor of the immune self as a “digested
metaphor of selfhood [has been] extended to everything . . . and thus
becomes a universal solvent to dissolve all of human culture into one
vat.”19 In other words, while Esposito looks to affirmatively extend
Foucault’s life-in-general principle by broadly theorizing immunity,
he actually reductively generalizes it to the extent that life, through
the concept of flesh of the world, is stripped of its material specificity.
The flattening of immunity’s contradictory and complex lived expe-
riences seems to portray a very general life principle that celebrates
the metaphor of life or vitality without actually attending to how life
would be differentially experienced by living bodies. Instead, to ac-
count for a more affirmative theory of immunity, more attention
needs to be given to the different lived experiences of immune and
autoimmune bodies while challenging foundational axioms in im-
munobiological theory and clinical practice.
Michelle Jamieson, in her intervention into the nature of allergic
and autoimmune reactions, insists that what is seen as a pathologi-
cal, improper, or infectious mistake can also be read as emerging
from an affirmative capacity of an organism. Jamieson sees both al-
lergy and autoimmunity as evidencing the body’s own capacity to
self-react rather than a system pathologically gone astray. The fact
that life can injure itself means that some form of violence and
 Ben Shimon: A Living Community 297

misidentification are inherent capacities of the immune system.

Crucially for Jamieson, these capacities point to the “flexible and
changeable nature of immune responsiveness [rather than tell of] a
linear narrative of infection, in which the physical integrity of an
organism is breached by the intrusion of an external, foreign ele-
ment.”20 Referring to the work of the Austrian pediatrician Clemens
von Pirquet, who coined the word allergy in 1906 to describe “al-
tered reactivity,”21 Jamieson shows how “contra to its conventional
usage in describing a specific category of pathology [the term allergy]
offered an all-encompassing account of the immune response that
aimed to underline what was common to all reactions, protective
and pathological.”22 Her genealogical rumination shows how Pir-
quet refigures the conceptual grounds of immune reactivity from
its self-defensive, stable, and atomist operation of a predetermined
self to one that emerges from its ability to mutate and change.
This, in turn, reconfigures the conventional dichotomous under-
standing of pathological and normal immune reactivity to a new
understanding that reads immune response as an ecological interre-
lationship between organism and antigen. Jamieson’s attempt to
open up the concept of immunity and understand the wide spectrum
of immune responsivity as a capacity of an organism, rather than as
a system that might pathologically attack itself, resonates with my
own experience of my autoimmune body, and it serves as an ade-
quate bridge to Tauber’s evolution of the concept of immunity and
his proposed new discipline of eco-immunology as a field of scientific
study.

Tauber’s Conceptual Reorientation: A Countermyth

Autoimmune Methodology?
In Tauber’s intervention, the philosophical exploration of the con-
cept of immunity—primarily based on the evolving understanding
of the scientific principles constituting immunobiology as a science—
allows for a more expansive and ambivalent conception of the mech-
anisms defining selfhood. This conception should be based not
just on a notion of a fortified self but on one defined by its ability
to tolerate symbiotic relationships with its environment, which is
298 qui parle december 2020 vol. 29 no. 2

responsible for constituting a large part of an organism’s existence.

Seen through this more relational lens, as the mechanisms defining
the identity of the organism are closely tied to the organism’s inter-
action with its environment, the conception of “the organism is not
given, but evolves; it is always adapting, always changing.”23 Thus,
to adequately account for the full spectrum of functions of immune
responsivity, these should be placed within wider teleological models
beyond the defense-driven “mechanical model of on or off switches
(i.e., ‘self’ and ‘other’ reflect the binary decisions of such mecha-
nisms).”24 Once the criteria for delineating an immune self was no
longer easily achieved, and the immune self’s central role in immune
theorizing was displaced, new meanings could emerge from immu-
nity’s loss of a focalizing orientation.
It is here that Tauber’s ecological intervention wishes to radically
shift immunology’s primarily biological disciplinary orientation by
instead positioning immunology among the environmental sciences,
beyond a model of “a simple on or off switch . . . [to] one more at-
tuned to the diversity of immune functions, and the various modal-
ities of activation, which contribute to evolutionary fitness.”25 In this
refiguration, the clear-cut boundaries of what is regarded as self and
what is regarded as other are challenged and replaced by a spectrum
of functions based on a wide range of immune responses that do not
adhere easily to the division of self and other. Instead of the sheltered
construct of a metaphorical immune self—which has been compli-
cated by current studies in contemporary transplantation biology
and autoimmunity—Tauber envisions a more reciprocal way of
explaining the same foundational principles by focusing on an eco-
logical orientation that evidences the mutual interactions of self
with its environment.26 Rather than a human agent with a clearly
defined and safeguarded identity with essential characteristics, ever-
changing and dynamic relationships are able to account for a capa-
cious understanding of organismic identity (Immunity, 9).
Tauber’s reorientation of immunology as an ecologically oriented
science or even transdiscipline resonates with my own autoimmune
experience: the interaction of the self with its environment is priori-
tized as the basis for accounting for organismic identity, where the
environment is conceived as far more fluid than self and other.
 Ben Shimon: A Living Community 299

Following the feminist theorist Donna Haraway, who understands

her own subject position as a discursive object, I claim that my auto-
immune intervention seems to take part in a personal countermyth
construction, critically challenging the axiomatic foundations within
immunobiology discourse and at the same time questioning the
appropriations and misappropriations of the concept of immunity
within political philosophy.
Simultaneously, the experience of resisting these foundations
takes place in a relational setting in which bodies, through their
interaction with their surrounding environment, detect that they
no longer belong to or tolerate the onto-epistemological laws that
dominant discourses put in place. In my healing process, I discovered
another body—a vast body of knowledge regarding alternative
homeopathic medical treatments for chronic disorders. I was about
to sign up at the Academic Medical Centre in Amsterdam for a bio-
logical treatment intended to suppress my “overly” active immune
system, and involving a lifelong treatment of the anti-TNF immuno-
suppressant drug Humira (adalimumab)—currently the world’s
largest-selling pharmaceutical product27—when I encountered an
alternative medicine practitioner who agreed to undertake a homeo-
pathic treatment for my autoimmune condition. The homeopath
first initiated a series of personal meetings with me to try to contex-
tualize my immunological imbalance within a more holistic picture
of disease. It was made clear to me in each meeting that the at-
tempted healing process was an experiment for her as a homeopath,
just as it was for me as a patient. After six months our series of meet-
ings ended as my immune system, according to my experience and
her diagnosis—after a year and a half of being off balance—was
back in balance. Today I do not suffer from any major pain in my
joints, and all visible symptoms, such as severe lesions on my palms
and the soles of my feet, have disappeared. Here the encounter with a
more holistic and relational view of the body, which understood the
patient and healing person as mutually interconnected in an attempt
to put the immune system back in balance, was a crucial factor in my
healing process. In my case, a mutually experimental and interde-
pendent therapeutic interaction with an alternative medical practi-
tioner allowed for a transformative experience of imagining an
300 qui parle december 2020 vol. 29 no. 2

outside to the otherwise binary situation of ease and disease, cure

and poison, self and other. This was a healing process more attuned
to that changing, dynamic, codependent, and not at all predictable
reality with which my autoimmune condition presented me. Can this
relationality of disagreeing bodies be envisioned as the common
ground for an alternative sense of community?

Narrating Life with Autoimmunity as a Daily

Social Practice of Care
What then is the link between the relationality of disagreeing bodies
and actually practicing a form of care that is more self-directed?
Here I believe that the relation with another person or body who dis-
agreed with normative formulations of disease, treatment, and heal-
ing gave me the confidence I needed to start caring otherwise for my
body. Simply put, the encounter with another disagreeing body em-
powered me to reformulate or renarrate my own bodily experience
and practice a new form of care that my body needed on a daily ba-
sis. How then does theorizing immunity from the experience of liv-
ing with an autoimmune condition more specifically teach or do
work on my own experience and narrative construction? Here I
understand my experience as a body that, through an intersubjective
exchange with its environment, detects that it does not belong to, or
agree with, the social body it is part of, and thus embarks on a border
crossing—on both a bodily and social “mission” to the other, yet un-
known, side. In that sense, the rebellion of the autoimmune disease
perhaps triggers in my own discursive subject position the juvenile
figure of the rebel without a cause. This figure, much like the rebel-
lious autoimmune disease—with an unknown cause—physically en-
acts resistance to order yet struggles to articulate what it means to be
a self, what it means to be diseased by its surrounding conditions,
and what should preferably be done about it. Is this lack or rebellion
devoid of cause also similar to Esposito’s community, which is united
by lack, characterized not “by what is proper but by what is improper”
(Communitas, 7)? Instead of understanding or narrating immunity
in a clear and bio-logical way, the experience of living with an auto-
immune condition that anarchically emerged against my body’s own
 Ben Shimon: A Living Community 301

life principles and that continues to (chronically) haunt my body

over time with no clear bio-logical reason, encouraged an attempt
to come to grips with it on more ambivalent and bio-illogical and
somewhat unstable grounds. In that sense, narrating or giving a
story-like structure to my experience enabled me to deal with the
aporic biological reality with which I was confronted. Rather than
a coherent or rational bodily experience, the bio-illogical compelled
me to learn to live with this body even when the axiomatic immuno-
logical foundations it supposedly rested on—that is, its self-defense
against threatening external pathogens—were not logical in the first
place. In this sense, creating an illogical autobiographical account in
which my body and I were learning to live together more harmoni-
ously became another element in the healing process.
To this day, and “despite significant advances in characterizing
the biochemical and genetic intricacies that both subtend and ani-
mate immune function, the reasons why harmful self-reactivity oc-
curs remains mysterious,” Cohen writes, as “immunology still offers
no consistent explanation for autoimmune pathologies” (“Self, Not-
Self,” 28). I contend that this “mysterious” inner tension within the
body’s autocomposition can still be operative in a way that provides
insight rather than hindrance to my reconceptualization of immu-
nity. The idea of other disagreeing notions of selves in mind felt
like the adequate response to the condition of autoimmunity my
body and I were living through. In that sense, learning to live with
and tolerate my autoimmune body and its bodily interaction with its
environment became, and remains ever since, an active daily practice
of care or care work. Caring for a self or body from which at times I
felt very alienated meant caring for it in its alterity, however unfamil-
iar or unruly it had become. Furthermore, as the autoimmune body
is still clinically diagnosed and socially understood as a body that is
in conflict with itself, it is less seen as a matter that needs public ad-
dress or care, as perhaps other forms of disability require. Put simply,
if the autoimmune body cannot even tolerate itself, why should
someone else be tolerant of it and care for it? In these circumstances,
it felt even more urgent to develop an intimate relationship with my
body. Caring for the inconsistencies or “pathologies” within this
autoimmune body thus also meant addressing internalized notions
302 qui parle december 2020 vol. 29 no. 2

of a “normal” immune body. Doing care work for this self meant
actively redrawing the borders between immune or autoimmune,
normal or pathological, self and other. I learned to relate to and
care for my autoimmune body as a responsive organism with a
capacity to evolve and change, rather than see it as a pathological
body with a system that had gone astray. Tolerating at once the
idea of what we have come to call the pathological and the normal—
as I came to experience it within my own bodily constitution—meant
giving my body more space to maneuver, in a bodily situation al-
ready prone to be stiffened in a very material motoric sense by the
debilitating pain in my joints and skeletal muscles.
Perhaps this “spacious” theorization of the body is what being
methodologically autoimmune in the world means, the key to devel-
oping an ethical and affirmative autoimmune response-ability. It is
thus not, as Esposito’s biopolitical and disembodied metaphor
would have it, a bios inscribed in the flesh of the world but a more
fleshy, expansive, and spacious understanding of the material world
already within the body that might allow for a more affirmative
notion of the border between life and politics, immunity and com-
munity, self and nonself. Here the munus (task, duty, gift), or onto-
epistemological ground or care work that needs to emerge, is an
affirmative form of giving comfort to the body or self (in the same
way that a shade tree gives comfort), rather than trying to fortify
it. Caring for the body in this sense does not have to do with making
it stronger by boosting its protection to make sure that it is ready for
any external foreign attack—as most immune politico-philosophical
theory and the metaphor of the body as a fortress implies. Instead,
caring for the body has to do with comforting what is being cared for
by making it feel more at ease.

Epilogue
As I was concluding this article, I learned from a close friend that he
had been diagnosed with an autoimmune disease. He had confessed
to me in the previous few weeks that he had experienced abnormal
pain and other symptoms. When seated next to him at a reading by
the poet Eileen Myles one evening, I felt a slight flare in the left part
 Ben Shimon: A Living Community 303

of my upper chest, reminiscent of the bodily sensation I had had

when my immune system was out of balance. Would it be too
much to speculate that in our mutually inclusive experiences as im-
mune and autoimmune, self and nonself, we might vulnerably em-
body a sense of a living community?
......................................................
ohad ben shimon is senior lecturer of critical thinking and
researcher of change management at The Hague University of
Applied Sciences, where he researches how to affirmatively include,
value, care for, and perform bodies in organizations. He is author of
a book of poetry, 2 blue cups on two different corners of the table
(2013), and of a monograph, Until the Last Breath (2018), which
deals with notions of speculation, big data, and prediction in volatile
markets.

Acknowledgments
I am grateful to Mercedes Azpilicueta and Joost de Bloois for their contin-
ual support and encouragement and to Kyra Sutton and Rachel Lim, from
the editorial board of Qui Parle, for their insightful and careful editorial
comments on an earlier version of the article. Given the emphasis on the
theme of care and the search for a caring community in my personal expe-
rience, I feel that the support and feedback I have received in writing this
article have been a powerful form of practicing care and understanding.

Notes
1. Burnet, “Darwinian Approach to Immunity,” 17.
2. Foucault, Society Must Be Defended, 253.
3. Agamben, Homo Sacer, 3.
4. Martin, “End of the Body?,” 121.
5. Martin, “End of the Body?,” 129.
6. Esposito, Immunitas; Esposito, Communitas; Esposito, Bíos; Esposito,
“Interview with Timothy Campbell.” Immunitas and Communitas are
hereafter cited by title in the text.
7. Cohen, “Self, Not-Self,” 29 (hereafter cited as “Self, Not-Self”).
8. Tauber, Immunity; Tauber, “From the Immune Self to Moral Agency”;
Tauber, “The Immune System and Its Ecology,”; Tauber, “Immune
Self.” Immunity is hereafter cited by title in the text.
304 qui parle december 2020 vol. 29 no. 2

9. In A Body Worth Defending Ed Cohen provides an insightful historical

genealogy of the concept of immunity. He traces how the concept of
immunity traveled from its origin in legal-political discourses in ancient
Rome to biomedical discourses at the end of the nineteenth century.
According to Cohen, immunity functioned for almost two thousand
years solely as a juridico-political concept that granted certain indi-
viduals an exemption from paying taxes or meeting other civil obli-
gations. Since the end of the nineteenth century—within the context of
various epidemics spreading across India, Europe, and the Americas
and discoveries made by the Russian zoologist Ilya Ilyich Mechnikov in
1880—immunity, according to Cohen, has been appropriated by the
bioscientific community as a type of bodily armor or defense system
that protects and guards one’s own individual body, which this indi-
vidual owns in the proper sense of the word. The principle of self/
nonself discrimination seems to obtain such a categorical imperative–
like position mainly because of the dominant dichotomies it puts in
place—reminiscent of the Western humanist philosophical project—in
which the self is established dialectically as what dominates, controls,
and polices the nonself (other) in order to secure its central, autono-
mous, and rational position.
10. While Esposito traces a more deconstructive genealogy to imagine
what an affirmative biopolitics could look like, Cohen’s genealogy is
mainly historical; this article therefore focuses more on the former than
the latter. Additionally, Cohen’s argument problematically essentializes
the legal-political history of immunity in ancient Roman law as an
ontologically separate genealogical origin “contaminated” by biology
at the end of the nineteenth century that strips biology of its possible
political dimension. For an illuminating new materialist reading of
Cohen’s genealogical argument, see Jamieson, “Politics of Immunity.”
11. Ferri, “Metaphors of Contagion and the Autoimmune Body,” 11.
12. Agamben, Homo Sacer; Rose, Politics of Life Itself.
13. Ferri, “Metaphors of Contagion and the Autoimmune Body,” 8.
14. Ferri, “Metaphors of Contagion and the Autoimmune Body,” 8.
15. The search for alternative forms of care thus became a personal form of
activism, inspired in part by the feminist self-help movements of the
1970s and by ACT UP (AIDS Coalition to Unleash Power), founded in
the 1980s, for what care outside medical-institutional confines could
be.
16. Esposito, Bíos, xxxiii.
 Ben Shimon: A Living Community 305

17. See Goodley et al., “Provocations for Critical Disability Studies”;

Mitchell, Antebi, and Snyder, Matter of Disability; Mitchell and
Snyder, Biopolitics of Disability; Mitchell and Snyder, Narrative
Prosthesis, 62–64; Sobchack, “A Leg to Stand On,” 20; Siebers, Dis-
ability Theory, 73–75; and Sontag, AIDS and Its Metaphors.
18. Tauber, Immunity; Mutsaers, Immunological Discourse in Political
Philosophy, 111.
19. Tauber, “From the Immune Self to Moral Agency,” 103.
20. Jamieson, “Allergy and Autoimmunity,” 19.
21. Pirquet, “Pirquet, Clemens von,” 426.
22. Jamieson, “Allergy and Autoimmunity,” 14.
23. Tauber, “Immune Self,” 3.
24. Tauber, “The Immune System and Its Ecology,” 238.
25. Tauber, “The Immune System and Its Ecology,” 234.
26. Tauber, “From the Immune Self to Moral Agency,” 101.
27. Urquhart, “Top Product Forecasts,” 86.

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