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Title: Sick Woman Theory Author: Johanna Hedva Date: 2016, 2020 Language: en Topics: sick woman theory, disability, health, care Source: https://johannahedva.com/SickWomanTheory_Hedva_2020.pdf Notes: An earlier version of the essay was first published in Mask Magazine, maskmagazine.com, January 2016. Edited by Hanna Hurr and Isabelle Nastasia. This text is adapted from the lecture, “My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want It to Matter Politically,” delivered at Human Resources, sponsored by the Women’s Center for Creative Work, in Los Angeles, on October 7, 2015.
In late 2014, I was sick with a chronic condition that, about every 12
to 18 months, gets bad enough to render me, for about five months each
time, unable to walk, drive, do my job, sometimes speak or understand
language, take a bath without assistance, and leave the bed. This
particular flare coincided with the Black Lives Matter protests, which I
would have attended unremittingly, had I been able to. I live one block
away from MacArthur Park in Los Angeles, a predominantly Latino
neighborhood and one colloquially understood to be the place where many
immigrants begin their American lives. The park, then, is not
surprisingly one of the most active places of protest in the city.
I listened to the sounds of the marches as they drifted up to my window.
Attached to the bed, I rose up my sick woman fist, in solidarity.
I started to think about what modes of protest are afforded to sick
people – it seemed to me that many for whom Black Lives Matter is
especially in service, might not be able to be present for the marches
because they were imprisoned by a job, the threat of being fired from
their job if they marched, or literal incarceration, and of course the
threat of violence and police brutality – but also because of illness or
disability, or because they were caring for someone with an illness or
disability.
I thought of all the other invisible bodies, with their fists up, tucked
away and out of sight. If we take Hannah Arendt’s definition of the
political – which is still one of the most dominant in mainstream
discourse – as being any action that is performed in public, we must
contend with the implications of what that excludes. If being present in
public is what is required to be political, then whole swathes of the
population can be deemed a-political – simply because they are not
physically able to get their bodies into the street.
In my graduate program, Arendt was a kind of god, and so I was trained
to think that her definition of the political was radically liberating.
Of course, I can see that it was, in its own way, in its time (the late
1950s): in one fell swoop she got rid of the need for infrastructures of
law, the democratic process of voting, the reliance on individuals
who’ve accumulated the power to affect policy – she got rid of the need
for policy at all. All of these had been required for an action to be
considered political and visible as such. No, Arendt said, just get your
body into the street, and bam: political.
There are two failures here, though. The first is her reliance on a
“public” – which requires a private, a binary between visible and
invisible space. This meant that whatever takes place in private is not
political. So, you can beat your wife in private and it doesn’t matter,
for instance. You can send private emails containing racial slurs, but
since they weren’t “meant for the public,” you are somehow not racist.
Arendt was worried that if everything can be considered political, then
nothing will be, which is why she divided the space into one that is
political and one that is not. But for the sake of this anxiety, she
chose to sacrifice whole groups of people, to continue to banish them to
invisibility and political irrelevance. She chose to keep them out of
the public sphere. I’m not the first to take Arendt to task for this.
The failure of Arendt’s political was immediately exposed in the civil
rights activism and feminism of the 1960s and 70s. “The personal is
political” can also be read as saying “the private is political.”
Because of course, everything you do in private is political: who you
have sex with, how long your showers are, if you have access to clean
water for a shower at all, and so on.
There is another problem too. As Judith Butler put it in her 2015
lecture, “Vulnerability and Resistance,” Arendt failed to account for
who is allowed in to the public space, of who’s in charge of the public.
Or, more specifically, who’s in charge of who gets in. Butler says that
there is always one thing true about a public demonstration: the police
are already there, or they are coming. This resonates with frightening
force when considering the context of Black Lives Matter. The
inevitability of violence at a demonstration – especially a
demonstration that emerged to insist upon the importance of bodies
who’ve been violently un-cared for – ensures that a certain amount of
people won’t, because they can’t, show up. Couple this with physical and
mental illnesses and disabilities that keep people in bed and at home,
and we must contend with the fact that many whom these protests are for,
are not able to participate in them – which means they are not able to
be visible as political activists.
There was a Tumblr post that came across my dash during these weeks of
protest, that said something to the effect of: “shout out to all the
disabled people, sick people, people with PTSD, anxiety, etc., who can’t
protest in the streets with us tonight. Your voices are heard and
valued, and with us.” Heart. Reblog.
I have chronic illness. For those who don’t know what chronic illness
means, let me help: the word “chronic” comes from the Greek “khronos,”
Latinized to “chronos,” which means “of time” (think of “chronology”),
and it specifically means “a lifetime.” So, a chronic illness is an
illness that lasts a lifetime. In other words, it does not get better.
There is no cure.
And think about the weight of time: yes, that means you feel it every
day. On very rare occasions, I get caught in a moment, as if something’s
plucked me out of the world, where I realize that I haven’t thought
about my illnesses for a few minutes, maybe a few precious hours. These
blissful moments of oblivion are the closest thing to a miracle that I
know. When you have chronic illness, life is reduced to a relentless
rationing of energy. It costs you to do anything: to get out of bed, to
cook for yourself, to get dressed, to answer an email. For those without
chronic illness, you can spend and spend without consequence: the cost
is not a problem. For those of us with limited funds, we have to ration,
we have a limited supply: we often run out before lunch.
I’ve come to think about chronic illness in other ways.
Ann Cvetkovich writes: “What if depression, in the Americas, at least,
could be traced to histories of colonialism, genocide, slavery, legal
exclusion, and everyday segregation and isolation that haunt all of our
lives, rather than to be biochemical imbalances?” I’d like to change the
word “depression” here to be all mental illnesses. Cvetkovich continues:
“Most medical literature tends to presume a white and middle-class
subject for whom feeling bad is frequently a mystery because it doesn’t
fit a life in which privilege and comfort make things seem fine on the
surface.” In other words, wellness as it is talked about in America
today, is a white and wealthy idea.
Let me quote Starhawk, in the preface to the new edition of her 1982
book Dreaming the Dark: “Psychologists have constructed a myth – that
somewhere there exists some state of health which is the norm, meaning
that most people presumably are in that state, and those who are
anxious, depressed, neurotic, distressed, or generally unhappy are
deviant.” I’d here supplant the word
“psychologists” with “white supremacy,” “doctors,” “your boss,”
“neoliberalism,” “heteronormativity,” and “America.”
There has been a slew of writing in recent years about how “female” pain
is treated – or rather, not treated as seriously as men’s in emergency
rooms and clinics, by doctors, specialists, insurance companies,
families, husbands, friends, the culture at large. In a recent article
in The Atlantic, called “How Doctors Take Women’s Pain Less Seriously,”
a husband writes about the experience of his wife Rachel’s long wait in
the ER before receiving the medical attention her condition warranted
(which was an ovarian torsion, where an ovarian cyst grows so large it
falls, twisting the fallopian tube). “Nationwide, men wait an average of
49 minutes before receiving an analgesic for acute abdominal pain. Women
wait an average of 65 minutes for the same thing. Rachel waited
somewhere between 90 minutes and two hours,” he writes. At the end of
the ordeal, Rachel had waited nearly fifteen hours before going into the
surgery she should have received upon arrival. The article concludes
with her physical scars healing, but that “she’s still grappling with
the psychic toll – what she calls ‘the trauma of not being seen.’”
What the article does not mention is race – which leads me to believe
that the writer and his wife are white. Whiteness is what allows for
such oblivious neutrality: it is the premise of blankness, the
presumption of the universal. (Studies have shown that white people will
listen to other white people when talking about race, far more openly
than they will to a person of color. As someone who is white-passing,
let me address white people directly: look at my white face and listen
up.)
The trauma of not being seen. Again – who is allowed in to the public
sphere? Who is allowed to be visible? I don’t mean to diminish Rachel’s
horrible experience – I myself once had to wait ten hours in an ER to be
diagnosed with a burst ovarian cyst – I only wish to point out the
presumptions upon which her horror relies: that our vulnerability should
be seen and honored, and that we should all receive care, quickly and in
a way that “respects the autonomy of the patient,” as the Four
Principles of Biomedical Ethics puts it. Of course, these presumptions
are what we all should have. But we must ask the question of who is
allowed to have them. In whom does society substantiate such beliefs?
And in whom does society enforce the opposite?
Compare Rachel’s experience at the hands of the medical establishment
with that of Kam
Brock’s. In September 2014, Brock, a 32-year-old black woman, born in
Jamaica and living in New York City, was driving a BMW when she was
pulled over by the police. They accused her of driving under the
influence of marijuana, and though her behavior and their search of her
car yielded nothing to support this, they nevertheless impounded her
car. According to a lawsuit brought against the City of New York and
Harlem Hospital by Brock, when Brock appeared the next day to retrieve
her car she was arrested by the police for behaving in a way that she
calls “emotional,” and involuntarily hospitalized in the Harlem Hospital
psych ward. (As someone who has also been involuntarily hospitalized for
behaving “too” emotionally, this story feels like a rip of recognition
through my brain.) The doctors thought she was “delusional” and
suffering from bipolar disorder, because she claimed that Obama followed
her on twitter – which was true, but which the medical staff failed to
confirm. She was then held for eight days, forcibly injected with
sedatives, made to ingest psychiatric medication, attend group therapy,
and stripped. The medical records of the hospital – obtained by her
lawyers – bear this out: the “master treatment plan” for Brock’s stay
reads, “Objective: Patient will verbalize the importance of education
for employment and will state that Obama is not following her on
Twitter.” It notes her “inability to test reality.” Upon her release,
she was given a bill for $13,637.10.
The question of why the hospital’s doctors thought Brock “delusional”
because of her Obamafollow claim is easily answered: Because, according
to this society, a young black woman can’t possibly be that important –
and for her to insist that she is must mean she’s “sick.”
So, as I lay there, unable to march, hold up a sign, shout a slogan that
would be heard, or be visible in any traditional capacity as a political
being, the central question of Sick Woman Theory formed: How do you
throw a brick through the window of a bank if you can’t get out of bed?
Before I can speak of the “sick woman” in all of her many guises, I must
first speak as an individual, and address you from my particular
location.
I am antagonistic to the notion that the Western medical-insurance
industrial complex understands me in my entirety, though they seem to
think they do. They have attached many words to me over the years, and
though some of these have provided articulation that was useful – after
all, no matter how much we are working to change the world, we must
still find ways of coping with the reality at hand – first I want to
suggest some other ways of understanding my “illness.”
Perhaps it can all be explained by the fact that my Moon’s in Cancer in
the 8^(th) House, the House of Death, or that my Mars, Saturn, and
Pluto—in astrology, the three “malefics,” or evil forces— are in the
12^(th) House, the House of Illness, Secrets, Sorrow, and Self-Undoing.
Or, that my father’s mother escaped from North Korea in her childhood
and hid this fact from the family until a few years ago, when she
accidentally let it slip out, and then swiftly, revealingly, denied it.
Or, that my mother suffers from undiagnosed mental illness that was
actively denied by her family, and was then exasperated by a
40-year-long drug and alcohol addiction, sexual trauma, and hepatitis
from a dirty needle, and to this day remains untreated, as she makes her
way in and out of jails, squats, and homelessness. Or, that I was
physically and emotionally abused as a child, raised in an environment
of poverty, addiction, and violence, and have been estranged from my
parents for 14 years. Perhaps it’s because I’m poor – according to the
IRS, in 2014, my adjusted gross income was $5,730 (a result of not being
well enough to work full-time) – which means that my health insurance is
provided by the state of California (Medi-Cal), that my “primary care
doctor” is a group of physician’s assistants and nurses in a clinic on
the second floor of a strip mall, and that I rely on food stamps to eat.
Perhaps it’s because I’m queer and gender nonbinary, first coming out to
my parents at age 14; finally leaving home at age 16 with the last black
eye I was willing to receive from my mother’s hand. Perhaps it can be
encapsulated in the word “trauma.” Perhaps I’ve just got thin skin, and
have had some bad luck.
It’s important that I also share the Western medical terminology that’s
been attached to me – whether I like it or not, it can provide a common
vocabulary: “This is the oppressor’s language,” Adrienne Rich wrote in
1971, “yet I need it to talk to you.” But let me offer another language,
too. In the Native American Cree language, the possessive noun and verb
of a sentence are structured differently than in English. In Cree, one
does not say, “I am sick.” Instead, one says, “The sickness has come to
me.” I love that and want to honor it.
So, here is what has come to me:
Endometriosis, which is a disease of the uterus where the uterine lining
grows where it shouldn’t – in the pelvic area mostly, but also anywhere,
the legs, abdomen, even the head. It causes chronic pain;
gastrointestinal chaos; epic, monstrous bleeding; in some cases, cancer;
and means that I have miscarried, can’t have children, and have several
surgeries to look forward to. When I explained the disease to a friend
who didn’t know about it, she exclaimed: “So your whole body is a
uterus!” That’s one way of looking at it, yes. (Imagine what the Ancient
Greek doctors – the fathers of the theory of the “wandering womb” –
would say about that.) It means that every month, those rogue uterine
cells that have implanted themselves throughout my body, “obey their
nature and bleed,” to quote fellow endo warrior Hilary Mantel. This
causes cysts, which eventually burst, leaving behind bundles of dead
tissue like the debris of little bombs.
Bipolar disorder, complex PTSD, panic disorder, and
depersonalization/derealization disorder have also come to me. This can
mean that I live between this world and another one, one created by my
own brain that has ceased to be contained by a discrete concept of
“self.” Because of these “disorders,” I have access to incredibly vivid
emotions, flights of thought, and dreamscapes, to the feeling that my
mind has been obliterated into stars, to the sensation that I have
become nothingness, as well as to intense ecstasies, raptures, sorrows,
and nightmarish hallucinations. I have been hospitalized, voluntarily
and involuntarily, because of it, and one of the medications I was
prescribed once nearly killed me – it produces a rare side effect where
one’s skin falls off. Another cost $800 a month – I only took it because
my doctor slipped me free samples. If I want to be able to hold a job –
which this world has decided I ought to be able to do – I must take an
anti-psychotic medication daily that causes short-term memory loss and
drooling, among other sexy side effects. These visitors have also
brought their friends: nervous breakdowns, mental collapses, or whatever
you want to call them, three times in my life. I’m certain they will be
guests in my house again. They have motivated attempts at suicide (most
of them while dissociated) more than a dozen times, the first one when I
was nine years old.
Finally, an autoimmune disease (or several?) that continues to baffle
all the doctors I’ve seen, has come to me and refuses still to be named.
On the same day this essay was originally published in Mask Magazine, a
neurologist diagnosed me with “100% fibromyalgia,” as a “place to
start.” More than one year before this, my “primary care” doctor had
referred me to see a neurologist, rheumatologist, and immunologist, so I
could begin testing for MS and other autoimmune diseases that some of my
symptoms pointed to. My insurance has yet to approve these referrals, or
to find a specialist within 150 miles who is covered by my plan; the
neurologist who diagnosed my fibro agreed to see me out-of-network,
cash-only, as a favor to a friend. I don’t have enough space here – will
I ever? – to describe what living with an autoimmune disease is like. I
can say it brings unimaginable fatigue, pain all over all the time,
susceptibility to illnesses, a body that performs its “normal” functions
monstrously abnormally or not at all.
With all of these visitors, I started writing Sick Woman Theory as a way
to survive in a reality that I find unbearable, and as a way to bear
witness to a self that does not feel like it can possibly be “mine.”
The early instigation for the project of a “Sick Woman Theory,” and how
it inherited its name, came from a few sources. The primary one was a
way to think how illness, disability, and vulnerability feminize—e.g.,
render “weaker” and “more fragile”—any person who requires care. One was
in response to Audrey Wollen’s “Sad Girl Theory,” which proposes a way
of redefining historically feminized pathologies into modes of political
protest for girls: Critical of Sad Girl Theory’s centering of whiteness,
beauty, heteronormativity, and middle class resources, I started to
think through the question of what happens to the sad girl who is poor,
queer, and/or not white, when, if, she grows up. Another was incited by
reading Kate Zambreno’s Heroines, and feeling an itch to fuck with the
concept of “heroism” at all, and so I wanted to propose a figure with
traditionally anti-heroic qualities – namely illness, idleness, and
inaction – as capable of being the symbol of a grand Theory. One of the
most resounding influences was from the 1973 feminist book Complaints
and Disorders, which differentiates between the “sick woman” of the
white upper class, and the “sickening women” of the non-white working
class. And if Sick Woman Theory has a guardian godmother, it would be
Audre Lorde.
Sick Woman Theory is for those who are faced with their vulnerability
and unbearable fragility, every day, and so have to fight for their
experience to be not only honored, but first made visible. For those
who, in Audre Lorde’s words, were never meant to survive: because this
world was built against their survival. It’s for my fellow spoonies, my
fellow sick and crip crew. You know who you are, even if you’ve not been
attached to a diagnosis: one of the aims of Sick Woman Theory is to
resist the notion that one needs to be legitimated by an institution, so
that they can try to fix you according to their terms. You don’t need to
be fixed, my queens – it’s the world that needs the fixing.
I offer this as a call to arms and a testimony of recognition. I hope
that my thoughts can provide articulation and resonance, as well as
tools of survival and resilience.
And for those of you who are not chronically ill or disabled, Sick Woman
Theory asks you to stretch your empathy this way. To face us, to listen,
to see.
Sick Woman Theory is an insistence that most modes of political protest
are internalized, lived, embodied, suffering, and no doubt invisible.
Sick Woman Theory redefines existence in a body as something that is
primarily and always vulnerable, following from Judith Butler’s recent
work on precarity and resistance. Because Butler’s premise insists that
a body is defined by its vulnerability, not temporarily affected by it,
the implication is that it is continuously reliant on infrastructures of
support in order to endure, and so we need to re-shape the world around
this fact. Sick Woman Theory maintains that the body and mind are
sensitive and reactive to regimes of oppression – particularly our
current regime of neoliberal, white-supremacist, imperial-capitalist,
cis-hetero-patriarchy. It is that all of our bodies and minds carry the
historical trauma of this, that it is the world itself that is making
and keeping us sick.
To take the term “woman” as the subject-position of this work is a
strategic, all-encompassing embrace and dedication to the particular,
rather than the universal. Though the identity of
“woman” has erased and excluded many (especially women of color and
trans/nonbinary/genderfluid people), I choose to use it because it still
represents the un-cared for, the secondary, the oppressed, the non-, the
un-, the less-than. The problematics of this term will always require
critique, and I hope that Sick Woman Theory can help undo those in its
own way. But more than anything, I’m inspired to use the word “woman”
because I saw this year how it can still be radical to be a woman in the
21^(st) century. I use it to honor a dear friend of mine who came out as
genderfluid last year. For her, what mattered the most was to be able to
call herself a “woman,” to use the pronouns “she/her.” She didn’t want
surgery or hormones; she loved her
body and her big dick and didn’t want to change it – she only wanted the
word. That the word itself can be an empowerment is the spirit in which
Sick Woman Theory is named.
The Sick Woman is an identity and body that can belong to anyone denied
the privileged existence – or the cruelly optimistic promise of such an
existence – of the white, straight, healthy, neurotypical, upper and
middle-class, cis- and able-bodied man who makes his home in a wealthy
country, has never not had health insurance, and whose importance to
society is everywhere recognized and made explicit by that society;
whose importance and care dominates that society, at the expense of
everyone else.
The Sick Woman is anyone who does not have this guarantee of care.
The Sick Woman is told that, to this society, her care, even her
survival, does not matter.
The Sick Woman is all of the “dysfunctional,” “dangerous” and “in
danger,” “badly behaved,”
“crazy,” “incurable,” “traumatized,” “disordered,” “diseased,”
“chronic,” “uninsurable,” “wretched,” “undesirable” and altogether
“dysfunctional” bodies belonging to women, people of color, poor, ill,
neuro-atypical, disabled, queer, trans, and genderfluid people, who have
been historically pathologized, hospitalized, institutionalized,
brutalized, rendered “unmanageable,” and therefore made culturally
illegitimate and politically invisible.
The Sick Woman is a black trans woman having panic attacks while using a
public restroom, in fear of the violence awaiting her.
The Sick Woman is the child of parents whose indigenous histories have
been erased, who suffers from the trauma of generations of colonization
and violence.
The Sick Woman is a homeless person, especially one with any kind of
disease and no access to treatment, and whose only access to
mental-health care is a 72-hour hold in the county hospital.
The Sick Woman is a mentally ill black woman whose family called the
police for help because she was suffering an episode, and who was
murdered in police custody, and whose story was denied by everyone
operating under white supremacy. Her name is Tanesha Anderson.
The Sick Woman is a 50-year-old gay man who was raped as a teenager and
has remained silent and shamed, believing that men can’t be raped.
The Sick Woman is a disabled person who couldn’t go to the lecture on
disability rights because it was held in a venue without accessibility.
The Sick Woman is a white woman with chronic illness rooted in sexual
trauma who must take painkillers in order to get out of bed.
The Sick Woman is a straight man with depression who’s been medicated
(managed) since early adolescence and now struggles to work the 60 hours
per week that his job demands.
The Sick Woman is someone diagnosed with a chronic illness, whose family
and friends continually tell them they should exercise more.
The Sick Woman is a queer woman of color whose activism, intellect,
rage, and depression are seen by white society as unlikeable attributes
of her personality.
The Sick Woman is a black man killed in police custody, and officially
said to have severed his own spine. His name is Freddie Gray.
The Sick Woman is a veteran suffering from PTSD on the months-long
waiting list to see a doctor at the VA.
The Sick Woman is a single mother, illegally emigrated to the “land of
the free,” shuffling between three jobs in order to feed her family, and
finding it harder and harder to breathe.
The Sick Woman is the refugee.
The Sick Woman is the abused child.
The Sick Woman is the person with autism whom the world is trying to
“cure.”
The Sick Woman is the starving.
The Sick Woman is the dying.
And, crucially: The Sick Woman is who capitalism needs to perpetuate
itself.
Why?
Because to stay alive, capitalism cannot be responsible for our care –
its logic of exploitation requires that some of us die.
“Sickness” as we speak of it today is a capitalist construct, as is its
perceived binary opposite, “wellness.” The “well” person is the person
well enough to go to work. The “sick” person is the one who can’t. What
is so destructive about conceiving of wellness as the default, as the
standard mode of existence, is that it invents illness as temporary.
When being sick is an abhorrence to the norm, it allows us to conceive
of care and support in the same way.
Care, in this configuration, is only required sometimes. When sickness
is temporary, care is not normal.
Here’s an exercise: go to the mirror, look yourself in the face, and say
out loud: “To take care of you is not normal. I can only do it
temporarily.”
Saying this to yourself will merely be an echo of what the world repeats
all the time.
I used to think that the most anti-capitalist gestures left had to do
with love, particularly love poetry: to write a love poem and give it to
the one you desired, seemed to me a radical resistance.
But now I see I was wrong.
The most anti-capitalist protest is to care for another and to care for
yourself. To take on the historically feminized and therefore invisible
practice of nursing, nurturing, caring. To take seriously each other’s
vulnerability and fragility and precarity, and to support it, honor it,
empower it. To protect each other, to enact and practice community. A
radical kinship, an interdependent sociality, a politics of care.
Because, once we are all ill and confined to the bed, sharing our
stories of therapies and comforts, forming support groups, bearing
witness to each other’s tales of trauma, prioritizing the care and love
of our sick, pained, expensive, sensitive, fantastic bodies, and there
is no one left to go to work, perhaps then, finally, capitalism will
screech to its much-needed, long-overdue, and motherfucking glorious
halt.
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