Sep
2006

Writing to be Whole Again: Narrating Disability, Illness and Trauma

I really was kidding in the previous post about forgetting what my fellow presenters and I proposed, but here’s the whole kit-n-kaboodle for those interested:

An increasing number of people living with a disability, an illness, or having survived a natural disaster are narrating their life stories to experience healing.

“Deformed” vs. “normal”, “diseased” vs. “healthy”, “fragmented” vs. “whole”. While the construction of self is never so blatantly binary, we are always hailed as embodying some normative or non-normative identity, and we must resolve our relationship to it. Cheryl Glenn asked, “What specific discursive features of reading, writing, speaking, listening, and/or silence contribute to representations of identities? With what consequences, in/exclusions, or possibilities? With what permanence?” We propose to answer these questions through an examination of narratives that are the ongoing results of traumatic events. The extent to which the narrator forms (or aligns him/herself) with an identity, whether online, in the local community, or in the classroom, presents both challenges and opportunities for analysis.

In “Enabled Identity, Written Identity: Disability and Ethnographic Narrative in the Composition Classroom,” Speaker 1 addresses “disabled” as another culturally constructed marker, defined by expectations about what constitutes “healthy” bodies. As Rosemarie Garland Thomson observes in her 1997 work Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature: “Disability, then, is the attribution of corporeal deviance – not so much a property of bodies as a product of cultural rules about what bodies should be or do.” Disabled and non-disabled bodies and identities are locked in an ever-shifting social web, constantly defining and being redefined. Moreover, those touched by the unique circumstances of disability and traumatic illness extend from the individual to family, friends, and those in care-related positions. Thus, few adults today have not been touched by disability; however, many avert their eyes in order to quell the pain and anxiety raised by the perception of suffering, silence and vulnerability. Speaker 1 will examine a study of ethnographic narratives written by or about people who are defined as “disabled” in the Composition classroom. These “disabled” people engage their own limitations and potentials. Their narratives, as well as the narratives of family, friends and members of a broader community, offer students a point from which to begin questioning and delineating how identity formation takes place. Furthermore, coexistent in an investigation of ethnographic method and disability studies are questions of who is “native” and who is the “fieldworker”. Or, are we all “participant-observers”? Speaker 1 concludes that this exchange challenges the students to locate an appropriate position and identity from which to situate their own intellectual (and emotional) understandings in the form of written responses.

In “Re-remembering HIV: Using Lore to Build a New and Less Traumatic Cultural Collective Memory in Gay Chat Space,” Speaker 2 discusses how the increased visibility of HIV on the web has allowed both HIV positive and negative gay men in a state located in the deep South to construct new identities. These new identities can be placed along a continuum that, until a few years ago, used a “clean” vs. “dirty” binary heuristic, which was regarded as “dramatic” (i.e., traumatic) by some members of the community. As of 2000, lore concerning HIV in gay chat space available to the local community was often wildly out of date. Created out of a sense of panic, this incorrect lore added to the trauma surrounding HIV, especially as this misinformation was sometimes deliberately disseminated in an attempt to project an image, and therefore an identity, of HIV positive gay men as both disease-ridden and villainous. However, as community members saw HIV represented both accurately, on websites such as Test Positive Aware and The Body, and inaccurately, on pages touting HIV as an easily treatable disease with few to none permanent consequences, the technology of the chat room was remediated from a means of social control of HIV positive men to a collective effort that constructed HIV status as merely one characteristic used to describe a given individual, similar to other less traumatic (though still charged) markers as age, gender, class and race. Speaker 2 concludes that this re-remembering created a new cultural memory that reconstructed HIV as neither always fatal nor as a minor illness, but as a serious though treatable sickness.

In “Online Communication Before, During and After Hurricane Katrina: Creating Relevant Truth and Offering a Sense of Comfort, Trust, and Familiarity,” Speaker 3 explores the breakdown of communication at times of crisis and how online spaces offer new ways to create knowledge and trust that are different from traditional media. The immediacy of the Internet allows websites and weblogs to have their own validity, levels of interaction, and concept(s) of truth, and thereby offered Louisiana, Texas, and Mississippi natives and Hurricane Katrina and Rita evacuees much-needed information and comfort. Using the theory of Cathy Caruth and Bessel Van der Kolk, an analysis of the online postings by those traumatized individuals separated from the place where their trauma occurred will illustrate how the web became their only means with which to take action, whether that be correcting overblown predictions by television broadcasters or pleading for help to save people and pets left behind. Through an exploration of the processes involved in the acts of witnessing, documenting, reacting to, and dealing with loss, Speaker 3 will demonstrate how the typically de-centered and diverse web created knowledge in a cooperative way more effectively than traditional media and ultimately created a collective voice for those trauma victims rendered physically helpless.

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