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Anne Boyer: Data’s Work is Never Done

Boundaries of Gender: In medicine, the work of care and the work of data converge.

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Shuli Sade, Data Square #2, 2014. Archival ink on archival paper, 40 x 40 in.

By Anne Boyer

In the waiting rooms of cancer clinics, the labor of care meets the labor of data. Wives fill out their husband’s forms. Mothers fill out their children’s. Sick women fill out their own. I am sick and a woman so I write my own name. At each appointment I am handed a printout from the general database that I am to amend or approve. The databases would be empty without us. The work of abstracting a person into a patient is women’s work—it only appears, at first, to be the work of machines.

Rate your pain on a scale of 1 to 10? I try to answer, but the correct answer is always “a-numerical.” Sensation is the enemy of quantification.

Receptionists distribute forms, print the bracelets to be read later by scanners held in the hands of other women. The nursing assistants stand in a doorway from which they never quite emerge. They hold these doors open with their bodies and call out patients’ names. These women are the paras in the thresholds, weighing the bodies of patients on digital scales, measuring vital signs in the staging area of a clinic’s open crannies. Then they lead the patient—in this case, they lead me—to an examining room and log into the system. They enter the numbers my body generates when offered to machines: how hot or cold I am, the rate at which my heart is beating. Then they ask the question: Rate your pain on a scale of 1 to 10? I try to answer, but the correct answer is always “a-numerical.” Sensation is the enemy of quantification. There is no machine, yet, to which a nervous system can submit to transform into a sufficiently descriptive measurement.

The bodies of women and men are both subject to these calculations, but it is the bodies of women, most often, who do the preliminary work of relocating the nebulousness and uncountability of illness into medicine’s technologized math.

Illness is chaotic. Medicine hyper-responds to the body’s unruly event of illness by transmuting it into data. A patient becomes information not merely via the quantities of whatever emerges from or passes through her discrete body: the bodies and sensations of entire populations are converted into the math of likelihood—of falling ill or staying well, of living or dying, of healing or suffering—upon which treatment is based. The bodies of women and men are both subject to these calculations, but it is the bodies of women, most often, who do the preliminary work of relocating the nebulousness and uncountability of illness into medicine’s technologized math.

What is your name and birthdate? A cancer patient’s name, stated by herself, is adjunct to the barcode of her wristband, then the adjunct of whatever substances—vials of drawn blood, the chemotherapy drugs to be infused into her—whose location and identity must be confirmed. Though my bracelet has been scanned for my identity, requiring me to repeat my name is medical information’s back-up plan: it is the punctum of every transmission of something to or from my body. I might sometimes remember who I am. But repetition is a method of desensitization. To rate your self on the scale of 1 to 10? In the intensive medicalized abstraction of cancer, I become a barely, my person subsidiary to the body’s sensations and to medicine’s informatic systems.

The nurses meet me in the examining room after I have replaced my clothes with a gown. They log into the system. Sometimes my blood has been drawn, and I am allowed to look at a printed page of its ingredients. Each week the blood flows with more or less of one kind of cell or substance than it did the week before. Levels of these substances go up or down, determine treatment’s future measurement, duration. The nurses ask questions about my experience of my body. They enter the sensations I describe into a computer, clicking on symptoms that have long been given a category and a name and an insurance code.

Strange reversals occur during serious illness… care becomes vivid and material.

The word care rarely calls to mind a keyboard. The work, often unwaged or poorly paid, of those who perform care, (or what is sometimes called “reproductive labor,” reproducing oneself and others as living bodies each day, of feeding, cleaning, tending, and so on) is what many understand to be that which is the least technological, the most affective and intuitive. Care is so often understood as a mode of feeling, neighboring, as it does, to love. Care seems as removed from quantification as the cared-for person’s sensations of weakness or pain seem removed from statistics class. I care for you suggests a different mode of abstraction (that of feeling) than the measurement of the cell division rate of a tumor (that of pathological fact). But strange reversals occur during serious illness. Or rather, what appears to be reversal becomes clarification. Our once solid, unpredictable, sensing, spectacularly messy and animal bodies submit—imperfectly, but also intensively—to the abstracting conditions of medicine. Care becomes vivid and material.

The receptionists, nursing assistants, lab technicians, and nurses are not only required to enter the information of my body into the databases, they also have to care for me while doing so. In the hospital, my urine is measured and charted by the same person who charms me with conversation. This is so that painful procedures will become less painful. The workers who check my name twice, scan my medical armband, and perform a two-person dose-accuracy reinforcement procedure as they attach chemotherapy drugs to my chest port are the same workers who touch my arm gently when I appear afraid. The worker who draws blood tells a joke.

A patient’s file is, like a lived-in home, the site of work that lasts the human eternal.

The work of care and the work of data exist in a kind of paradoxical simultaneity: what both hold in common is they are done so often by women, and like all that has historically been identified as women’s work, it is work that can look invisible. It is often only noted when it is absent: a dirty house attracts more attention than a clean one. The background that appears effortless only appears with great effort: the work of care and the work of data are quiet, daily, persistent, and never done. A patient’s file is, like a lived-in home, the site of work that lasts the human eternal.

During my treatment for cancer, all of these workers—the receptionists, paraprofessionals, and nurses—have been women. The doctors, who are sometimes women and sometimes men, meet with me at the point of my body’s peak quantification. They log into the system, but they type less or sometimes not at all. As their eyes pass over the screen that displays my body’s updated categories and quantities, I think of John Donne’s Devotions Upon Emergent Occasions: “They have seen me and heard me, arraigned me in these fetters and received the evidence, I have cut up mine own anatomy, dissected myself and they are gone to read upon me.” If it is the women who transmute bodies into data, it is the doctors who assume the form of scanner. They have no particular alchemy. The other workers have extracted and labeled me: I have informatisized my own sensation. It is the doctors who read me—or rather, read what my body has become: a patient made of information, produced by the work of women.

Anne Boyer’s forthcoming books include Garments Against Women from Ahsahta press and Money City Sick as Fuck from Flowers & Cream. She is an assistant professor of the liberal arts at the Kansas City Art Institute.

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