Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics

  • View

  • Download

Embed Size (px)

Text of Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics

  • 8/17/2019 Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics


         

       

    Emily Waples

    Configurations, Volume 22, Number 2, Spring 2014, pp. 153-181 (Article)

          

    DOI: 10.1353/con.2014.0011

    For additional information about this article

      Access provided by Universidad Autonoma de Barcelona (20 Aug 2015 16:31 GMT)


    http://muse.jhu.edu/journals/con/summary/v022/22.2.waples.html http://muse.jhu.edu/journals/con/summary/v022/22.2.waples.html

  • 8/17/2019 Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics


    ABSTRACT: This essay argues that the medium of graphic illness mem-

    oir, or “autopathographics,” can work to challenge the master plot

    of “survival” that has circulated as part of breast cancer culture for

    the past thirty years. Exploring the emergent genre of breast cancer

    autopathographics through an analysis of two best-selling memoirs

    published in 2006—Marisa Acocella Marchetto’s Cancer Vixen: A True Story and Miriam Engelberg’s Cancer Made Me a Shallower Person:

     A Memoir in Comics—this essay examines the  graphic   in two senses:

    first, it strives to enter an emergent conversation about the uses of the

    visual-verbal genre of graphic memoir as a means to narrate stories

    of illness and disability; further, it takes into account the popular us-

    age of the word  graphic  to note the kind of explicitness or excess for

    which illness narratives are commonly critiqued. Autopathographics

    offer new possibilities for women to represent the embodied changes

    occasioned by cancer in ways that register the uncertainty of the dis- ease’s temporality in the face of metastasis and terminal illness—part

    of breast cancer’s epidemiological narrative that is too often ignored.

    In the early weeks of 2014, a heated debate took place in the digital

    public sphere regarding cancer patients’ self-representation in social

    media, beginning when a provocative Guardian article by Emma

    Keller asked: “What are the ethics of tweeting a terminal illness?”1 


    Avatars, Illness, and Authority:

    Embodied Experience in Breast

    Cancer Autopathographics

    Emily Waples

    University of Michigan

    Configurations, 2014, 22:153–181 © 2014 by Johns Hopkins University

    Press and the Society for Literature, Science, and the Arts.

    1. Emma G. Keller, “Forget Funeral Selfies: What Are the Ethics of Tweeting a Terminal

    Illness?” Guardian, January 8, 2014. The article has since been removed from the Guard-

    ian’s website “pending investigation.”

  • 8/17/2019 Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics



    2. See Lisa Bonchek Adams’s Twitter profile at https://twitter.com/AdamsLisa.

    3. Bill Keller, “Heroic Measures,” New York Times,  January 12, 2014. http://www.ny


    4. Katie Halper, “Former NYT editor mansplains to cancer patient to shut up and die

    the right way,” Feministing.com, January 14, 2014. http://feministing.com/2014/01/14


    5. See “Selfies at Funerals,” December 10, 2013. http://selfiesatfunerals.tumblr.com/.

    The question indeed seems sweeping in its scope, drawing together

    the narrative practice of pathography, the self-publication modes af-

    forded by digital media, and, apparently, “ethics.” Keller’s article is

    more pointed than it might first appear, focusing solely on the testcase of Lisa Bonchek Adams, an American woman with metastatic

    breast cancer who has been chronicling her treatment on Twitter:

    “Doing as much as I can for as long as I can,” as Adams’s Twitter

    profile reads—including, but not limited to, chemotherapy, radia-

    tion, and clinical trials.2 Days after Keller’s article appeared in the

    Guardian, her husband, journalist Bill Keller, weighed in with a New

    York Times op-ed of his own, registering his disapproval with what

    he calls Adams’s “fierce and very public cage fight with death.” As

    he notes, Adams has “tweeted through morphine haze and radia- tion burn” with a candor that seems extreme, “[e]ven by contem-

    porary standards of social-media self-disclosure.”3  Keller critiques

    not only the “very public” nature of Adams’s relationship to can-

    cer, but indeed her “fierceness,” as he goes on to wax philosophical

    about the lost art of the “humane and honorable death”—or, as the

    Feministing.com blog glossed it: “Former NYT editor mansplains to

    cancer patient to shut up and die the right way.”4

    In her Guardian article, Emma Keller self-identifies as an ardent

    follower of Adams’s Twitter feed—one who is, she confesses, “em- barrassed at my voyeurism.” Keller’s own embarrassment occasions a

    series of questions about what she calls the “ethics” of dying online:

    “Should there be boundaries in this kind of experience?” she asks.

    “Is there such a thing as TMI? Are [Adams’s] tweets a grim equivalent

    of deathbed selfies, one step further than funeral selfies? Why am I

    so obsessed?”5 Keller’s questions vacillate between issues of author-

    ship and readership, muddling the matter of whether the “ethics” in

    question relate to production or to consumption—or perhaps to a

    space situated somewhere between tweeting and reading. While the title of Keller’s article—“What Are the Ethics of Tweeting a Terminal

    Illness?”—suggests that the ethical imperative lies with the tweeter,

    its motivating anxieties instead arise from her subject position as a

    reader. Turning to her own audience in the Guardian thus becomes

  • 8/17/2019 Waples-Avatars, Illness, And Authority Embodied Experience in Breast Cancer Autopathographics


    Waples / Breast Cancer Autopathographics 155

    a way for Keller to attempt to negotiate her Schadenfreude: “Is this

    educational,” she asks us, “or too much?”

      The ethics of autobiographical, public self-representation have

    been explored by scholars like Arthur Frank and G. Thomas Couser,who engage with illness narratives in terms of both production and

    reception. Couser coins the term auto/bio/ethics in his consideration

    of the bioethical implications of autobiographical, biographical, and

    ethnographic practice, engaging in particular with what he calls

    “vulnerable subjects”: “persons who are liable to exposure by some-

    one with whom they are involved in an intimate or trust-based re-

    lationship but are unable to represent themselves in writing or to

    offer meaningful consent to their representation by someone else.”6

    However, the vulnerable subject does not characterize Adams, who is fully capable of her own self-representation. What, then, are the

    ethical issues at stake for Adams and/or her readers?

      Keller’s concerns are not so much questions of ethics, I suggest,

    as questions of genre. After all, the quandary that Keller faces in her

    struggle to interpret Adams’s Twitter feed—and her own experience

    of reading it—seems to arise less from her desire to reconcile it with

    an ethical schema than from her impetus to classify it as an auto-

    biographical narrative mode. Adams’s tweets, she claims, are either

    “educational”—an understanding of life-writing that arguably stems from Benjamin Franklin’s early incarnation of American autobiog-

    raphy as a didactic practice—or else it is excessive. Per Keller, the

    publication of pathography—what she deems “dying out loud”—

    must be ethical, or else egotistical. Keller’s discomfort with Adams

    has to do with exposure, with excess: that is, with “graphic” self-

    representation of a nonpedagogical nature. “The moral imperative

    of narrative ethics,” according to Frank, “is perpetual self-reflection

    on the sort of person that one’s story is shaping one into, entailing

    the requirement to change that self-story if the wrong self is being shaped. Thus awareness of the general type of narrative one is tell-

    ing or responding to is a crucial beginning.”7 What kind of story is

    Adams telling with her tweets?

      In her seminal investigation of the genre, Anne Hunsaker

    Hawkins defines  pathography  as “a form of autobiography or biog-

    raphy that describes personal experiences of illness, treatment, and

    6. G. Thomas Couser, Vulnerable Subjects: Ethics and Life Writing (Ithaca, NY: CornellUniversity Press, 2004), pp. iv, xii.

    7. Arthur Frank divides stories of illness