Notes for “Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying” in conversation with the Canaries
“Notes for Sick Time” was first published in the Museum of Fine Art Houston’s Core Program 2015-16 book in January of 2016. Intended as a living and working document for Sick Time, subsequent versions will be published as the project unfolds. This version is published here partially in response to Michael Bise’s review, “Snake Oil: Taraneh Fazeli, Critical Writing Fellow, Core Program,” on Glasstire, since Fazeli’s text taken to task is not widely accessible. We encourage you to read the robust dialogue in the comments section following that article on Glasstire. Not only does it explore a fundamental disagreement on how the two authors view disability—Bise, a medical/ individual model which privileges independence, and Fazeli, who positively addressing the myriad radical possibilities for gaining agency and negotiation with the problems of the body by combining a political relational model that views dependency with others positively—the active feedback demonstrates that the “we” this text tries to align with is in fact already there.
While at the Museum of Fine Art Houston’s Core program, I have developed a multi-prong curatorial project entitled Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying, which focuses on spatial temporal controls of the ill or impaired body in various discourses and institutions and draws from the large medical presence in Houston. This project is grounded in an understanding that “wellness” culture is fundamentally a capitalist enterprise, which aims to sell our bodies back to us amidst a scarcity of resources and language to address new environmentally caused and chronic illnesses that are rapidly unfolding. Grappling with the off-tempo infirm (or otherwise “disordered”) body that won’t efficiently labor, Sick Time will consider illness as a form of knowledge of imbalances in the world writ large. Beyond merely representing the various political conditions around corporeal spaces of impairment, the artworks and programs in the project will re-envision collective wellness: many of the artists with whom I plan to work, think, and feel consider how the leaky and porous body in states of debility and disability can provide new possibilities for collectivity, privileging interdependency while also negotiating and maintaining difference through radical kinship and forms of care. By joining efforts with fellow canaries in the coal mine, seemingly passive states will become active sites of resistance.
In relation to queer theorist Elizabeth Freeman’s recent theorizations of “chrononormativity” or how “proper” subjectivity distributes time around work and leisure towards maximum productivity1, I’d like to propose a consideration of the temporalities of the states of debility and disability (alongside the more commonplace processes of aging and daily rest) as potentially resistive to capitalism and other forces of oppression. Dragging on, circling back, with no regard for the stricture of the work week or compulsory able-bodiness, sick time is an amalgam of queer and crip times.2 Sick time is non-compliant. It refuses a fantasy of normalcy measured by either-in-or-out thresholds, demands care that exceeds that which the nuclear family unit can provide, and hints at how we might begin to tell capitalism to back the fuck off and keep its hands to itself (i.e. pretty please stop expropriating even our most basic reproductive labor and resources).
A political reclaiming of the derogatory label “cripple,” crip is a term that gained wide usage in the 1970s and has been popularized in disability theory and activism. Used to describe both members and allies of the disability community, it links people with all kinds of physical and non-physical disabilities and identities.3 As a political category, disability has been long contested for how it leans on assumptions of naturalness and denies impairment is part of what makes us human. It generally refers to the inability to do something considered normal and necessary in society as a result of bodily impairment. While crip time is not exactly the same as sick time, one thing that unites disabled people with those in other fluctuating states of debility is that their bodies are simply not as valuable to capitalism, which assesses human bodies by their ability to labor.4 Crip time refers to the temporality of non-normative embodiments, from the day-to-day negotiations of moving from one space to another to the long view of historical time that has historically written disabled people out of the future (e.g. sterilization campaigns and institutionalization).5 Crip time is shaped by dependency. Although the pain and social stigma felt by those whose material realities are marked by particular forms of difference must be recognized—i.e. swimming upstream with a physical impairment or illness sure isn’t fun—this state does offer chronopolitical resistance to calls for normalization. Sick Time focuses both on this temporal state and others that are marked by structural processes of exclusion—as regulation and governance of the body is entangled with race, class, religion, and sexuality, crip time must also be thought alongside considerations of time from feminist, queer, postcolonial, and black radical theories.
In art and literature, bouts of illness have long been represented as simultaneously mundane and transcendental experiences, producing heightened sensitivity and knowledge about the meaning of consciousness for those who endure them. In the medical field, there has been the rise of what theorist Michel Foucault called the “medical gaze,” or the dehumanizing separation of the patient’s body from the patient themselves (mind, soul, etc.).6 In order for the project to question underlying assumptions in various fields of knowledge around the body and respond to the contributions of invested parties that might not otherwise work together (namely artists and cultural theorists, clinicians from the bio-medical field, care and public health workers, and disability activists), I am structuring the development of workshops, a study group, publications, performances, and exhibitions in multiple nodes.
“Get well soon.”
“Sorry you’re sick.”
“Hurry up and get better. We miss you.”
“I worry. You really should take better care of yourself.”
“You’re working too hard.”
“I never get sick.”
“I’m lucky, I haven’t taken a sick day in years.”
“What can we do to help you feel better?”7
From the tender expressions that we use to comfort ill friends, to the narratives that we hang on our own experiences in states of impairment, cultural views of illness are perhaps best illustrated by the language used to describe such states. Much of poet Virginia Woolf’s writing was done while afflicted, so she often drew directly and indirectly from her experiences with psychological and physical illnesses. In the opening sentences of her 1925 essay “On Being Ill” Woolf raises a rhetorical question in order to address what she called the “daily drama of the body”: “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… it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature.”8 After recognizing that was a bit of an overstatement and there had indeed been volumes on illness by Proust and others, Woolf reiterates that not enough ink has been spilled upon odes to pneumonia as she’d like and emphasized that “literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear.” She sets the record straight: “On the contrary, the very opposite is true.”9
Woolf’s words make a case for how the mortal body’s corporeal reality is, in fact, inextricable from one’s life and, although history focuses on her mental illnesses more than on her other ailments10, her physical, emotional, and mental symptoms are intertwined without hierarchy within her writing. Woolf writes like a person in the throes of chronic illness—the fever, the pain, the mind numb, the crankiness, the quiet vulnerability. She vacillates wildly between hardness and softness, goes on for pages about the sky seen through her window, occasionally rambles in run-on sentences, and her circum-navigatory style is disjointed and raw. While language around illness often makes sick bodies more foreign, the strength of Woolf’s embodied writing is that it seems to have emerged less from a concern with representing her condition to readers than with simply using language to live through the daily machinations of her illnesses. In her satire on conformity, Woolf found creative inspiration within illness and even valorized it as a state in which one can be unencumbered by normal responsibilities to the world and endowed with mystical knowledge. (Of course, that her class status allowed her to stay in her sickbed must be recognized). As opposed to “the army of the upright”11 which mill about “with the heroism of the ant or the bee” and become titans of industry, the invalid has time.12 Time to observe, to daydream, to be difficult and uncooperative.
As a counterpoint, perhaps the most well-known piece of criticism that took up Romantic era conceptions of invalidism as synonymous with nihilistic bohemian cool is critic Susan Sontag’s oft-cited “Illness as Metaphor” which, notably, was taken to task for lacking critical impartiality and distance. In a series of essays written during one of her bouts with breast cancer in 1978, Sontag parsed the metaphors of various paradigmatic diseases—tuberculosis, cancer, and, later in her related 1988 essay “AIDS and Its Metaphors,” AIDS—so as to reveal underlying ideological motives for producing what she understood as stigmatizing myths that were out of sync with the material realities of those afflicted.13 At the time of the essays’ original publishing, the critique was not as much about Sontag’s argument as her tone, that of palpable anger14—not only was she unwell but, on top of that, she had to wear a yoke of assumptions about her experience constructed by narratives which did not resemble her own. While other writers have understood such symbolism as useful for the ill in creating meaning out of what is often a painful and isolating experience—which has been said of Woolf—Sontag did not.
By tracing how tuberculosis and cancer came to be linked in public imaginaries to repression, Sontag tied this to a notion of disease from the Romantic era that considered ailments as expressive of one’s unfulfilled “character” and possibly even caused by it (e.g. this is operative in the image of the conflict-averse bourgeois cancer patient). While this might have allowed for a reexamination of biomedicine’s valorization of the mind over body, Sontag focused on tracing Western discourses of health to the emergence of the Modern individual subject, which, she argued, produced a “blame the victim” mentality.
Fast forward thirty years and this mentality still holds. Amidst what I would argue is a crisis around the very concepts of subjectivity and agency in critical theory, the impaired or recuperating body is now, more than ever, a site for re-examining understandings of interiority and exteriority, foreignness, and what constitutes a body and differentiates the human. The dominant paradigms of illness have shifted from diseases caused by viral and bacterial agents to “diseases of civilization,” those resulting from living in developed societies. Environmental irritants cause lead poisoning and chemical sensitivity, diets high in processed sugars manifest in an increased rate of diabetes, and repetitive physical stress on the job (be it on the assembly line or in front of the computer) leads to “burn-out” and attendant physiological symptoms like ulcers.15 So we are making ourselves sick and since so many of these illnesses are chronic in nature, there’s no getting well soon. Borders are being redrawn within the permeable self on a molecular level: thousands of little critters living in our gut influence not only our digestion but also our mood and mental acuity16 while PTSD rewrites the genetic code of victims of genocide by inscribing trauma into their progeny’s bodies.17 Humans have proven susceptible to the very same violence that we have inflicted upon the environment and its other inhabitants, emphasizing human interdependence with non-human actors from the inside out. We are becoming increasingly allergic to the society we have built. This is not science fiction, it is our reality.
So, let us take lessons from the vanguard of this body horror show: consider the insomniacs that chase away the work day’s encroaching tentacles with ambien (denying the effects of their over-productive and screen-saturated environments), all while those combating auto-immune disorders whisper Donna Haraway’s name as ingesting an “all-natural” diet alongside injections of human antibodies grown within other animals.18 See how forces of capitalism have driven us to self-medicate and chemically rewrite the human body so as to adapt to its demands at all costs, all while the impaired body right under our noses points to the latent potential that was always already there in becoming necessarily contingent and transhuman. Despite my fear of re-inscribing Sontag’s stigmatizing myths by casting the ill or disabled as twenty-first century soothsayers or blaming afflicted persons for the effects of systemic violence, I would argue that those whose bodies bear these marks tell us all something about the way that the environment, political unrest, oppression, and trauma are experienced in a singular body as well as collective ones. Litmus tests of society’s wellbeing, our bodies are wise and we need to start listening.
However, the impaired body is not a weapon when it remains isolated. As writer and comrade Johanna Hevda asks in her unfolding manuscript This Earth, Our Hospital (Sick Woman Theory): “How do you throw a brick through the window of a bank if you can’t get out of bed?”18 We must also speak pragmatically about how to come together despite access limited by the built environment and an ever-increasing commodification of desire and vital social functions, from affectations and friendship to self care.19 The central question of Sick Time will be: how do we envision ways to care for ourselves and others in a manner which eschews placement of guilt on the sick individual and avoids pathologizing non-normative bodies or behaviors, thereby disavowing the role of environmental factors, economic inequality, and systemic violence’s traumatic impact? (Note the emphasis on we, i.e. mutual aid, a community of support, indebtedness.)20
“There’s nothing clinically wrong.”
“Maybe you’re just stressed? You don’t seem yourself lately.”
“Did you ever think it might be all in your head?”
“It’s silly, but I just feel like something’s not right”21
This project is motivated by my own lived experience, so this text calls for getting personal. I was a chronically ill youth, from perpetual cycles of strep throat to kidney infections to sinus infections to you name it. The doctors didn’t know what to do. In desperation, they put me on antibiotics for two years straight. After years of shuttling between specialists and fighting HMOs for care when doctors hinted at psychosomatic causes, I was diagnosed with an auto-immune disease and related disorders, then turned to “non-traditional” forms of treatment to deal with my uncharted illnesses. I rebounded after adolescence, going on to pass as “well” for most of my adult life despite my compromised immune system. I worked my ass off for projects and causes I felt impassioned about, but a culture of achievement doesn’t go hand-in-hand with wellness even when you are working in contexts couched in feminism and Marxism.
At this moment, I am once again sick. I am amidst what appears to be an auto-immune flare. I recently had a series of salivary gland stones after which a CAT scan brought up something the doctor “didn’t like.” Now I am awaiting biopsy results with my fingers crossed. My dwindling mental energy has been dedicated to pushing through an emergency Medicaid application and negotiating free treatment at training hospitals since I can’t afford healthcare. I say this because it has not only influenced this text’s content, but its form: I originally anticipated penning a meta-memoir on illness, but brain fog and attendant malaise (i.e. finding myself neck deep in the epistemological haze around illness) means this was simply not feasible in the editorial timeframe. So, here you find a set of speculations and invitation to an art collective to think alongside me.
As part of seminars that I co-founded at the New Museum, last year I organized an intergroup dialogue workshop with artists Jesse Cohen and Carolyn Lazard, two co-founders of Canaries. Shortly after, I became a member of this group of self-identified women and gender nonconforming people living and working with autoimmune diseases and related conditions that is both a support/advocacy group and art collective. Our discussions have strongly influenced Sick Time’s development, so I invited the Canaries to make a broadsheet publication using text and images to investigate the bifurcation of body and mind in Western biomedicine and other discourses, focusing on how this dialectic is interestingly pressurized by their own experiences with autoimmune illnesses and the state of a flare (period of heightened relapse).
Auto-immune diseases such as lupus or Crohn’s differ, but are generally defined by an immune system that goes into overdrive and attacks itself, unable to differentiate between the body and harmful foreign agents. There are no cures for these idiopathic diseases, only management and avoidance of severe symptoms that return in temporal periods known as “flares” (in contradistinction to “remission”). These chronic illnesses are thought to be triggered by either environmental irritants or an immune system confused as a result of overly hygienic environments and are not mental illnesses. However, because they often resemble other illnesses, are hard to diagnose, and three quarters of those afflicted are women, they have historically been wrapped in discourses of feminized hysteria and hypochondria. Often clinicians initially understand patients as merely over-reactive or one of the “worried well,” so it takes an average of five years and five doctors to get diagnosed.22 Without coordinated care, patients must navigate between specialists and quickly become versed in the language of the medical field. The diseases can be extremely isolating: physical symptoms like lethargy and chronic pain come with the fact that one’s new reality does not sync with dominant norms or understandings and, since the disease is exacerbated by environmental triggers, the afflicted become increasingly wary of the world. Notably, the way the brain influences the immune and endocrine function in these particular illnesses makes a biomedical case for connections between thought, emotion, and physiological health that surpasses existing understandings in the mental illness paradigm.
View Fazeli’s excerpted letter of invitation to the Canaries (57 members) on November 19, 2015. [PDF]
The Canaries began as an informal support coven. While not all of its members are artists, many are painters, actors, and writers who were schooled in critical theory and, as sudden pain in their own bodies exceeded interpretation by familiar discourses, they came together in monthly meetings to find new language and share strategies for coping with (and learning from) their invisible disabilities, which include both drugs and surgery from big pharma as well as diet or other “lifestyle” choices and treatments outside of conventional medicine. More recently, a website comprised of personal stories and other resources has carried the group’s work out into a broader advocacy context. Their motto, “First order of business: be together!” emphasizes the group’s social support component and the speed that co-production within a collective of artists with disabilities requires. Similar to how activist art collective Gran Fury developed out of ACT UP, some members make artwork on related concerns. In Canaries, 2014 (Cleopatra’s, New York) they showed individual member’s artworks within a group exhibition on the epistemological shortcomings of a culture that insists on the duality of body and mind. Subsequently, as part of Initial Conditions at Franklin Street Works in 2015, they collectively made The Zone, a wellness space for quieting down that is not geared towards facilitating optimal productivity.
True to crip time, Notes for the Waiting Room broadsheet’s materials are arriving only as this text is being finalized for print. Rather than describe the Canaries’ practices at length, I chose to lay a conceptual groundwork and will let the artwork speak for itself. Following this text is my curatorial prompt, which I encourage you to read along with Notes for the Waiting Room (forthcoming, Fall 2016). We hope it will challenge the unilateral and hierarchical transmission of information from doctor to patient and, much like the overall art and advocacy work of the Canaries, foster solidarity and embodied knowledge sharing instead.
Update/September 7, 2016: At the time of this republishing, Notes for the Waiting Room is in editing stages, with elements set to be developed in dialogue with the public through a series of workshops. The first workshop, “Calling in Sick” took place at Project Row Houses, and subsequent workshops are being developed as part of Fazeli’s upcoming residency at Shandaken Project this Summer; a Canaries’ residency this Fall; and other locations, to be announced.
In addition to individually authored artworks and texts by Canaries members, the publication will include a “tool kit” (which is comprised of various healing modalities useful to avowed cyborgs, from companion species to drugs) and an annotated bibliography comprised of titles Canaries have found invaluable in navigating life as chronically ill people, particularly those who produce art or discourse from that position. Each entry is written by different members from the first person perspective, to mirror the resource sharing process that happens within the Canaries support network: while some Canaries tend to interpret their experience from a more explicitly socio-political angle, others from a spiritual one, and yet others draw on a medical perspective, via monthly meetings and an email group the sharing of resources comes with an understanding that this collective resource pool reflects a diversity of life programs (and contestation inevitably happens amidst the negotiation of support). The publication will also include a play on the traditional medical questionnaire and choreographic scores that reconfigure patient-to-patient and patient-to-doctor interactions. After the public feedback phase Notes for the Waiting Room will be printed and distributed in art and medical contexts (actual doctor’s waiting rooms).
As artists/creatives navigating their own conditions through a creative matrix, in their work around illness many explore how to find agency in occupying the troubled dual position of being both an object of study and producer of images and discourse. In the gesture of sharing a publication about care relations beyond that of doctor-to-patient in different contexts, not only are the Canaries supporting communities with the particular bodily affliction of auto-immunity, they are building an argument for a form of resistance that’s always existed but hasn’t been as visible as other forms that happen in “public” rather than “the bedroom.” While recognizing not all have the ability or desire to frame their bodies’ refusals as resistance, in their work together which highlights small interpersonal gestures like acts of care, the Canaries find agency in dependency and further complicate the polarities that suggest individualism or independence must be counter to reliance on others––revealing that soft oscillation that goes on between individual and collective life.
Update/December 8, 2017: Notes for the Waiting Room [PDF]
Thanks to all Canaries, official and unofficial. Catherine Czacki, Bonnie Swencionis, Jesse Cohen and Carolyn Lazard for the intellectual and emotional collaboration. Maureen Connor and Richard Gibbs for the most comfortable sick beds ever. Nicole Burisch, Natasha Marie Llorens, Jen Petrisko, and Corey Towers for holding my hand during test results. My mother, my first caretaker. Andy Campbell, Amalle Dublon, Chelsea Knight, Jordan Lord, Park McArthur, Risa Puleo, and Tina Zavitsanos for showing me it always takes a village. My village (you know who you are). Jennie Ash, Ryan Dennis, and Carrie Marie Schneider for hosting Sick Time at charge/Project Row Houses. Lily Cox-Richard, Mary Leclère, and Neil Penny for editorial support. The Idea Fund and MFAH’s Core Program for financially supporting the Sick Time project.
- Elizabeth Freeman, Time Binds: Queer Temporalities, Queer Histories (Durham, NC: Duke University Press, 2010), ix–xxiv. In opposition to the use of time to organize human bodies towards maximum productivity that is felt under a capitalist regime, in Time Binds Freeman draws from queer theory to offer up temporal drag as a viable oppositional force. Freeman positions her own work in a genealogy that departs from a progressivist historiography, instead emphasizing opportunities for rethinking historical consciousness in erotic terms by cultivating “queer asynchronicity” as both a lived experience and a historical method. This historical method incorporates the temporal heterogeneity required to revisit unfinished histories in a manner that accounts for the disenfranchised and disavowed. Freeman suggests that this disjunctive temporality, while a common symptom to the creation of a modern subject, is most pronounced in the bodies of gay men after the AIDS crisis. ↩
- Alison Kafer, “Time for Disability Studies and a Future for Crips” in Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 25-46. In order to address how some disabled people’s desire for medical treatment does not preclude the need for us to imagine futures where disability can be understood as possible or desirable, Kafer opens with a distinction between “curative time” and cure: the former describes the assumption that medical intervention is the only way to encounter disability (thereby reading disabled people as obstacles to the arc of progress), with cures, or disabled people’s varied relationships to particular medical interventions. Throughout the chapter, Kafer examines how the discourses of queer and crip time are mutually entangled in their imagining of futurity outside of dominant narratives of progress, or how they think “straight” time differently, arguing that disability is already present in queer time. However, she argues that while recent theorizations of time by Lee Edelman, Elizabeth Freeman, and others deploy illness or disability in their definitions, they still write disability out of future ways of being. In addition to trying to think queer time through disability, after outlining Edelman’s ideas on how normative futurity gets thought through reproductive terms (and how this idealization of The Child is at the frontier of American politics), Kafer departs from his assumption that queers would be better off refusing the future altogether, instead arguing for a future that no longer depends on exclusion of queers and crips. ↩
- Victoria Ann Lewis, “Crip” in Keywords for Disability Studies (New York: New York University Press, 2015), 46-48. ↩
- McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006). ↩
- Kafer, 25-46. Kafer defines crip time as, “flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and bodies.”(27) Illness and disability might “cause time to slow, or to be experienced in quick bursts, they can lead to feelings of asynchrony or temporal dissonance; depression and mania are often experienced through time shifts, and people with various impairments move or think at a slower (or faster) pace than culturally expected. These shifts in timing and pacing can of necessity and by design lead to departures from ‘straight’ time, whether straight time means a firm delineation between past/present/ future or an expectation of a linear development from dependent childhood to independent reproductive adulthood.” (34) ↩
- Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York: Vintage, 1994). ↩
- These well-intended comments from concerned friends, family, lovers, and colleagues typify the moralizing expectations of self-management, the differentiation between collective and individual wellbeing, illness as an event rather than health understood on a continuum, and labor’s antagonistic relation to debility. Grammatically, the use of first person and second person further isolates the sick from the well. Behests to return to normalcy by closing the unpleasant chapter of illness as quickly as possible are made without any reference to the root causes or material realities of the ill person (likely due to the discomfort of asking about another’s body and personal health). By contrast, the last question emphasizes a collective effort. ↩
- Virginia Woolf, On Being Ill (Paris: Paris Press, 2002), 3-4. ↩
- Ibid, 4. ↩
- The psychological symptoms are likely emphasized due to Woolf’s eventual demise via suicide in 1941. ↩
- Woolf, 12. ↩
- Ibid, 16. ↩
- Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (London: Picador, 2001). ↩
- Denis Donoghue, “Illness As Metaphor,” New York Times Book Review, July 16, 1978, accessed December 1, 2015, http://www.nytimes.com/1978/07/16/books/booksspecial/sontag-illness.html?_r=0. ↩
- This history is traced through the lens of a public health organization that shifted from containment, to treatment, to prevention in the exhibition the Story of CDC, at the David C. Spencer Museum in Atlanta, GA in association with the Smithsonian Institute. ↩
- Peter Andrey Smith, “Can the Bacteria in Your Gut Explain Your Mood?,” New York Times Magazine, June 23, 2015, accessed December 1, 2015, http://www.nytimes.com/2015/06/28/magazine/can-the-bacteria-in-your-gut-explain-your-mood.html. David Kohn, “When Gut Bacteria changes Brain Function,” The Atlantic, June 24, 2015, accessed December 1, 2015, http://www.theatlantic.com/health/archive/2015/06/gut-bacteria-on-the-brain/395918/. ↩
- Judith Shulevitz, “The Science of Suffering,” New Republic, November 16, 2014, accessed December 1, 2015, https://newrepublic.com/article/120144/trauma-genetic-scientists-say-parents-are-passing-ptsd-kids. ↩
- Johanna Hevda, This Earth, Our Hospital (Sick Woman Theory, and Other Writings), 2016, accessed January 1, 2016, http://johannahedva.com/hospital.html. I take relief in the fact there is a cacophony of (female) voices emerging on the ill body that protests. In addition to Hevda’s text, there’s filmmaker Lena Dunham’s account of living with endometriosis published on her mailing list Lenny Letter, poet Amy Berkowitz’s book-length lyric essay about fibromyalgia, rape culture, and chronic pain called Tender Points (Oakland, CA: Timeless, Infinite Light, 2015), artist and filmmaker Carolyn Lazard’s essay “How to Be a Person in the Age of Auto-Immunity” (The Cluster Mag, January 16, 2013), and disability and queer theorist Mel Chen’s very personal account of living with the effects of mercurial poisoning and multiple chemical sensitivity disorder in a chapter of her book Animacies (Durham, NC: Duke University Press, 2012). Curatorial projects such as the feminist health care research group’s “Sick Leave” take on the patholigization of the ill body and conspire to find collective care outside dominant system, while “Safe” in London is a group show that takes filmmaker Todd Haynes’ critically acclaimed motion picture Safe about a housewife with multiple chemical sensitivity disorder as a departure point. ↩
- Franco Bifo Berardi, The Soul at Work: From Alienation to Autonomy (Los Angeles, CA: Semiotext(e), 2009). ↩
- Writer Fred Moten (among many others) theorizes debt as more than a negative economic relation, looking instead at the necessary interdependency amongst historically disenfranchised peoples as a paradigmatic example of social debt as human asset. ↩
- These statements address how the mind-body divide comes into play around treating illnesses that remain mysterious to biomedicine, such as autoimmune disorders and other chronic conditions. ↩
- Meghan O’Rourke, “What’s Wrong With Me?,” The New Yorker, August 26, 2013, accessed January 1, 2016, http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me. ↩
After struggling through the first four paragraphs, I surmise that the essay might contain a few important ideas, but the manner in which they are conveyed lacks focus, passion, and style. Between thought and expression, as Lou Reed once sang, lies a lifetime.