By Mary Grace Bernard, in Response to Tilt West’s Roundtable, Every/body: Art, Representation & Accessibility
As a twenty-seven-year-old, thin white female from the United States who is close to finishing graduate school, I am expected to have a functioning, productive body and mind in order to be a “good” citizen in this capitalistic society. Especially in the public sphere, where my body and mind appear to function “normally,” it is assumed that I am able to move quickly, work long hours, and maybe even have an active social life a few nights per week. A career and a little fun are the expected goals.
I am an emerging artist and an arts writer. And I have invisible disability. I was diagnosed with cystic fibrosis at the age of six when my younger brother died of the same illness. Twenty-one years later, the amount of time spent on self-care and dependent-care just to move my body and mind is upwards of five hours a day. This time increases to twenty-four hours on those (not infrequent) occasions when I have to be hospitalized for two weeks at a time.
This essay expands on Tilt West’s roundtable discussion on disability, “Every/body: Art, Representation, and Accessibility,”elaborating on three concepts very crucial to the politics of disability: care, dependency, and crip time. These ideas have tremendously impacted my life but are rarely considered in disability studies and conversations.
These three terms speak not only to my personal experience with disability but to the various body and mind experiences of three important artists making headway in today’s contemporary art world. Carolyn Lazard, a Philadelphia-based artist, and Park McArthur and Constantina Zavitsanos, who work in New York, have begun exhibiting at such venues as the New Museum, the Whitney Museum, and the Modern Museum of Art. They have also won numerous awards for their artistic commentary on the medical industrial complex, debt, care, dependency, and crip time. While these artists mainly produce artworks, they also spend a significant part of their time writing and publishing about their personal experiences with disability, which is a crucial aspect of their practice as social activists working to expand society’s awareness of disability.
Care Collective (2011-present) is an ongoing performance project that comprises a network of people, including Zavitsanos and occasionally Lazard, who assist McArthur with her nightly routine, such as taking a bath, cooking dinner, and getting into pajamas. The collective makes evident both the significance of care and dependency and how care and dependency are rarely seen in public. Dependency is portrayed as unwilling reliance on another body, mind, institution, source of nutrition, medication, etc. It goes hand in hand with care because disabled bodies and minds often depend on continuous care from the self and others.
In “Sort of Like a Hug: Notes on Collectivity, Conviviality, and Care,” McArthur defines care as “a spectrum of dependency and labor different than childcare, different than elder care, and different than the heteropatriarchal configurations of an unwaged laborer reproducing a waged laborer for tomorrow’s workday.”[1] In other words, care is about caring for a body and mind that is not functioning, producing, or generating in terms of the capitalistic body and mind. However, as all these artists’ performances show, care and dependency do not exist within a system of binaries, but as part of a spectrum.
In their 2016 performance Support System: for Tina, Park, and Bob, Lazard exposes how care and dependency are interchanged not only between performer and participant, but between the person who is understood as receiving care and the person who is understood as giving care. From 9 a.m. to 9 p.m., during their residency at Room & Board in New York City, Lazard welcomed guests one at a time for thirty-minute intervals into their bedroom, a space dedicated to the private realm. Each guest was asked to either sit with Lazard, talk with them, or help them with chores.
According to Room & Board’s founder Julia Pelta Feldman, “part of the idea was to create a performance work that would allow [Lazard] to rest: a marathon of comfort instead of the extreme asceticism fetishized by the art world.”[2] This being said, however, Lazard ended up caring for their visitors by talking with them, conducting tarot readings, and providing them with emotional support. As one participant noted, it was a marathon of ‘affective labor,’ the kind that is least valued in our society, and that is (perhaps not coincidentally) most often performed by women.”[3] In the end, Lazard’s twelve-hour performance revealed how we are all dependent on one another and in need of care, whether we identify as disabled or not.
Support System, then, exposes how care and dependency are not experiences confined to people who identify as disabled. It shows how disability is not limited to one type of experience but actually a multitude of experiences tied to various complex embodiments. In other words, rather than revealing a simple binary of disabled and abled, i.e. Lazard and visitor, the artist explores how care and dependency (and in turn disability) are a spectrum: both Lazard and their visitor are within the spectrum because both are in need of care.
In addition, as Care Collective and McArthur’s nightly routine shows, McArthur is constantly dependent on her friends and loved ones to help her take a shower, get dressed, and get in bed. However, even though the artist receives care from and is dependent on her loved ones, partners, and friends who expect nothing in exchange, she still returns care to those who take care of her. In fact, a few months after Zavitsanos and McArthur began using letters, text messages, and text-based art to explore ideas of care and intimacy, McArthur began a routine of brushing Zavitsanos’ teeth.[4] Also, McArthur undoubtedly provides care to her friends and loved ones via emotional support, conversation, and company.
In my 2018 performance you need to gain weight to stay healthy, I wanted to reveal a type of care that causes pain but is needed in order to stay healthy long-term. On a mid-May day, I nervously handed out little tasters of weight gain shake to everyone sitting in the audience. I then waited for five minutes to pass and proceeded to take off my clothes down to my nude-colored underwear. I was shaking uncontrollably. Once I mixed the four weight gain powder packets with four glasses of milk, which added up to a total of three thousand calories, I drank all four glasses as my belly swelled with pain. Then I got up, started putting my clothes back on, and sat on the ground. As I was putting on my shoes, I quickly grabbed the nearest garbage can to puke what I had just imbibed.
This form of self-care via performance is an exhibition of dependency where I expose my dependence on weight gain shakes for “nutrition,” my dependence on doctors, my feeding tube scar, which itself displays my former dependence on a feeding tube, and the “nutrition” it provided me for three years.
Crip time, a term defined by Alison Kafer, is the temporality of non-normative embodiments, from the day-to-day negotiations of moving from one space to the other, to the long view of historical time that has historically written disabled people out of the future.[5] Namely, crip time is shaped by the experiences of disabled bodies and minds who remain largely invisible in political, social, economic, and historical spheres. While crip time can be experienced by all bodies and minds, disabled bodies and minds are hyperaware of crip time since they usually experience it on a daily basis, whereas others may only experience it during temporary bouts of illness, sickness, or disability.
Once I drank all four glasses of weight gain shake and started to put my clothes back on to show that we were now moving back into the public, the sphere where I do not look sick, where I have invisible disability, I grabbed for the nearest garbage can. While I did not plan this, it was the perfect moment to vomit because, since I threw up in what signified the public sphere, my movements and actions showed that I was still sick, always sick, no matter which sphere I was in, and demonstrated that crip time occurs in both spheres and thus blurs the boundaries between them. As a result, when the dividing lines between public and private are no longer there, issues of care and dependency are no longer an individual problem but a collective problem.
Ultimately, as determined by my personal experiences living in and through crip time and performing you need to gain weight to stay healthy (2018), I have come to understand crip time as my way of living. For me, crip time is when I do my breathing treatment at 7 a.m. and 10 p.m. Crip time is when I eat and take my oral medications. Crip time is when I take care of myself, when my partner takes care of me, when my mother takes care of me. Crip time is when I go to school or work and still have nausea and/or a headache. Crip time is when I rest and sleep. Crip time is when I feel well enough to ride my bike down to the park. Crip time is when I have to be hospitalized. Crip time, for me and my disabled body and mind, is all of the time. Crip time is embodied time.
Through our efforts of making the invisible visible, Lazard, Zavitsanos, McArthur, and I write and perform about our disabled bodies and minds to offer what scholar Sophie Anne Oliver explains as “an ontological and structural model through which the concept of embodied ethical spectatorship might begin to be imagined.”[6] Our work, sharing the experiences we live within our disabled bodies and minds and within the social constructions and institutions that choose to render disability invisible, along with the work by several other scholars and artists with disability, are only tiny steps toward a collective goal of changing the Western perspective that wants to write people with disability out of the past, present, and future.
Disability representation and accessibility in the arts are absolutely necessary to make the voices of the invisible shared, heard, and understood. However, it is crucial to remember and take notice of the components happening often times in the private sphere (i.e. personal experiences) of disability politics that must occur before entering the public sphere. Without acknowledging care, dependency, and crip time, it is almost impossible to completely address issues surrounding disability representation and accessibility in the arts.
[1]Park McArthur, “Sort of Like a Hug: Notes on Collectivity, Conviviality, and Care.” The Happy Hypocrite7, Heat Island, (2014): 48–60, 51.
[2]Julia Pelta Feldman, “On Carolyn Lazard’s Support System (for Tina, Park, and Bob) Sunday, October 30, 2016.” Room & Board, Williamsburg, Brooklyn(2016), accessed August 25, 2019, https://roomandboard.nyc/salons/carolyn-lazard-support-system/, 6.
[3]Feldman, 6.
[4]Park McArthur and Constantina Zavitsanos, “Other forms of conviviality,” Women & Performance, October 30, 2013, accessed August 25, 2019, https://www.womenandperformance.org/ampersand/ampersand-articles/other-forms-of-conviviality.html.
[5]Alison Kafer, Feminist, Queer, Crip(Bloomington: Indiana University Press, 2013), 36–37.
[6]Sophie Anne Oliver, “Trauma, bodies, and performance art: Towards an embodied ethics of seeing,” Continuum: Journal of Media and Cultural Studies24, no. 1 (2010): 119–129, 125.
Mary Grace is an artist and scholar living with cystic fibrosis, a chronic illness that informs her daily art, writing, and curatorial practice. In an effort to combine art theory and art practice, Mary Grace analyzes contemporary performance artists through performances of her own. In an attempt to break down binaries, she makes the invisibility of chronic illness visible and advocates the importance of bringing the (dis)abled community to the forefront of art historical and theoretical conversations.
