View of Disability Life Writing and the Online Diary

Abstract

The blog offers alternatives to conventional representations of disability ex- perience through its ability to negotiate between the requirements of public writing and the shape of particular lives. Despite some limitations of access and a legiti- mate trepidation about potential surveillance, disabled individuals have been able to construct life narratives that reflect the discontinuous and uneven experience of bodies affected by mobility and sensory impairments, spasticity, fatigue, and chronic pain. Such narratives resist emplotment based on unrealistic expectations of resolution and recovery, and for those able to move beyond the prefabricated architecture of popular blogging platforms, the online diary can circumvent the physical decline accentuated by a chronological organization in favor of a topical organization that maintains the speaker’s integrity as an ongoing participant in the life of the world.

Résumé

Par sa capacité à négocier entre les exigences de l’écriture publique et les figu- rations de la vie dans toute sa singularité, le blog offre des alternatives aux représen- tations conventionnelles de l’expérience des moins-valides. Malgré un accès parfois limité et une inquiétude légitime à l’encontre d’une surveillance potentielle, les moins- valides sont en mesure d’édifier des récits de vie qui reflètent l’expérience discontinue et irrégulière de corps affectés par une détérioration des sens et de la mobilité, de paralysie spasmodique, de douleurs chroniques et de fatigue. De tels récits résistent à la narration basée sur des attentes irréalistes de résolution et de guérison, et pour ceux en mesure d’aller au-delà de l’architecture préfabriquée des plateformes de blog populaires, le journal en ligne peut permettre de contourner le déclin physique ac- centué par une organisation chronologique en faveur d’une organisation topique qui préserve l’intégrité du narrateur en tant qu’acteur à part entière de la vie quotidienne.

Elizabeth G

Disability Life Writing and the Online Diary

To refer to this article :

Elizabeth G^rubGeld, “Disability Life Writing and the Onlinde Diary”, in: Interférences littéraires/Literaire interferenties, November 2012, 9, Matthieu S^erGier & Sonja

http://www.interferenceslitteraires.be ISSN : 2031 - 2790

Geneviève Fabry (UCL) Anke Gilleir (KULeuven) Gian Paolo Giudiccetti (UCL) Agnès Guiderdoni (FNRS – UCL) Ortwin de GraeF (Kuleuven) Ben de bruyn (FWO - KULeuven) Jan Herman (KULeuven)

Marie HoldSwortH (UCL) Guido latré (UCL)

Nadia lie (KULeuven) Michel liSSe (FNRS – UCL)

Anneleen maSScHelein (FWO – KULeuven) Christophe meurée (FNRS – UCL)

Reine meylaertS (KULeuven) Stéphanie VanaSten (FNRS – UCL) Bart Vanden boScHe (KULeuven) Marc Van VaecK (KULeuven) Pieter VerStraeten (KULeuven)

Olivier ammour-mayeur (Monash University - Merbourne) Ingo berenSmeyer (Universität Giessen)

Lars bernaertS (Universiteit Gent & Vrije Universiteit Brussel) Faith bincKeS (Worcester College - Oxford)

Philiep boSSier (Rijksuniversiteit Groningen) Franca bruera (Università di Torino)

Àlvaro ceballoS Viro (Université de Liège) Christian cHelebourG (Université de Nancy II) Edoardo coStadura (Friedrich Schiller Universität Jena) Nicola creiGHton (Queen’s University Belfast) William M. decKer (Oklahoma State University)

Dirk delabaStita (Facultés Universitaires Notre-Dame de la Paix - Namur)

Michel delVille (Université de Liège)

César dominGuez (Universidad de Santiago de Compostella

& King’s College)

Gillis dorleijn (Rijksuniversiteit Groningen)

Ute Heidmann (Université de Lausanne)

Klaus H. KieFer (Ludwig Maxilimians Universität München) Michael KoHlHauer (Université de Savoie)

Isabelle KrzywKowSKi (Université de Grenoble) Sofiane laGHouati (Musée Royal de Mariemont) François lecercle (Université de Paris IV - Sorbonne) Ilse loGie (Universiteit Gent)

Marc mauFort (Université Libre de Bruxelles) Isabelle meuret (Université Libre de Bruxelles) Christina morin (Queen’s University Belfast) Miguel norbartubarri (Universiteit Antwerpen) Olivier odaert (Université de Limoges) Andréa oberHuber (Université de Montréal)

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(FWO – KULeuven) – Secrétaires de rédaction - Redactiesecretarissen Elke d’HoKer (KULeuven)

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Life narratives of disability have often molded themselves into patterns ob- servable within the literature, media, and popular discourse of specific cultures.

Those patterns are in turn enforced by the demands of a publishing industry res- ponsive to the expectations of readers. As a species of life narrative, the online diary can offer options for life writing that differ significantly from the models pervasive in traditional publication venues. Before discussing the new models made possible by the online diary, I will briefly address the relationship of blogging to the paper diary, questions of audience, and the ways conditions of production impact the blog’s voice, content, and shape.

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Blogs can serve many functions: commentary on ideas or world events; gos- sip about celebrities and athletes; the self-promotion of public figures in media, politics, or sports; information and advice for those seeking help with financial problems, divorce, weight loss, or almost any other concern. The blog roll, generally placed to the side of one’s own text leads readers to other blogs of common inte- rest, potentially creating networks of information and even community. Some have suggested that the blog is primarily a place to look outward toward other websites or offline events rather than to introspectively review one’s life. However, Susan Herring and others have countered that to define blogs in that way is to give undue emphasis to the types of blogs favored by well-educated and politically engaged adult men at the expense of more narrative and self-reflecting blogs often written by women and young adults.¹ My interest is in that latter sort of blogging as prac- ticed by persons with disabilities. As a form of life writing, the blog’s adaptation of diaristic features can provide significant narrative options for people who are disabled.

The relationship between the diary and the blog as genres has been a subject of much discussion and controversy, and my objective is neither to review that scholarship nor to make yet another attempt at generic classification. However, because I am looking at blogs as online diaries, it is important to make some claims for their function as a diaristic form of autobiography. Blogs resemble diaries in a number of ways. As Madeline Sorapure has noted, “The insistent presentness of the web – the imperative to keep web sites updated – parallels the diary’s traditio- nally non-retrospective autobiographical form: a series of entries, each one dated

1. Susan C. HerrinG, Inna Kouper, Lois Ann ScHeidt & Elijah L. wriGHt, “Women and children last: The discursive construction of weblogs,” in : Laura GuraK, Smiljana antonijeVic, Laurie joHnSon, Ckancy ratliFF & Jessica reyman (eds.), Into the Blogosphere: Rhetoric, Community, and Culture of Weblogs, University of Minnesota, 2004, [online], http://blog.lib.umn.edu/blogosphere.

and rooted firmly in its present moment”.² As she suggests, blogs are not static productions; the blog shapes itself through gradual accretion, with new entries sup- planting the old. The old is rarely revised or altered in light of the new. Rather than giving the impression of a static point of narrative consciousness from which a story is told retrospectively, the blog and the diary foreground the voice’s perpetual reemergence in ever-advancing points in time. Although certain themes or subject matters may dominate, the organization is nearly always resolutely chronological, even as the blog’s structure may differ from traditional diaries in deemphasizing and obscuring the reader’s apprehension of linear time or of its dominance as an organizational structure.

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Like the diary, the blog occupies a nether space between private and public text, and this consideration is important in terms of both its form and its rhetoric.

Philippe Lejeune has asserted that while the blog exists somewhere between diary and letter, its sense of audience is closer to the diarist’s pursuit of “an alter ego” as reader.³ The author of Wheelchair Dancer affirms this claim as she explains how blog creates a persona and a space for self-reflection: “Oddly enough,” she writes, “this blogging persona is a useful place for me to check in with myself about such things.

Tomorrow is my 5 year blogging anniversary. Hooray!! Wheelchair dancer was just a name I gave myself five years ago for a place where I recorded what I did and ranted about disability nastiness. Over time, though, I think the posts have revealed a strong and consistent personality. Only a small portion of my life and thoughts end up on this blog, but those that do reflect, for the most part, the person I would like to be”.⁴ The discovery of narrative voice becomes as important here as the re- cording of personal anecdotes that address incidents of discrimination or difficulty.

Although some bloggers, like the author of Wheelchair Dancer, define the motive for writing as a predominantly self-reflective one, most disabled bloggers declare their purpose to be the dissemination of information or encouragement to others with similar impairments, educating those without those impairments, leaving a legacy for children or other loved ones, or registering their take on any number of religious, political, or social issues from a disabled perspective. Stephen Kuusisto writes in his introduction to a special issue on blogging in Disability Studies Quarterly:

The web log is part notebook, part opinion magazine, half public speech, half the stuff of privacy. It is shrill, uninformed, sober, giddy, and in the right hands, a medium of inquiry. One thinks of Charles Dickens’s description of the writer as being an “ink stained wretch” for like the dailiness of journalism, the blog demands constant attention: noteworthy bloggers often have hun- dreds, if not thousands of readers who expect fresh material each morning.

In turn the blog allows for conversations between writer and reader as well

2. Madeline Sorapure, “Screening Moments, Scrolling Lives: Diary Writing on the Web”, in : Biography, 2003, 26, 1, 2.

3. Philippe lejeune, “Le moi électronique”, [online], http://www.autopacte.org.

4. “Wheelchair Dancer”, [online], http://cripwheels.blogspot.com. All second references to this and other blogs will be indicated in the text by the blog title.

Elizabeth GrubGeld

as offering a cyber space «agora» — a very public space for argumentation, agreement, truth telling, and occasional lying.⁵

If Kuusisto is correct, audience plays a greater part in the rhetoric of blogging than Lejeune recognizes. In a study of weblogs and guides to web blogging, Julie Rak concludes that many bloggers understand their medium “as an outlet for unofficial writing that takes place outside professional publishing. It is designed to circumvent the traditional circuit of publishing between the writer, agent, editor, publisher, dis- tributor, and seller”. Rak continues, “In the available guides to constructing blogs, bloggers are encouraged to see themselves as writers who want an audience and want to be part of a community, and who should be willing to forego certain as- pects of anonymity and privacy in order to build readership”.⁶

Despite an audience that may in some cases be, as Lejeune proposes, no more than an alter ego, the blog acknowledges itself as a public document. Like a diary that has fallen into the wrong hands, the blog can be read by the wrong eyes, and fear of an adversarial audience can affect some content and approach. Sarah Lewthwaite, a researcher on disability and media at Nottingham, addresses the pro- blematic reality that employers and those who monitor disability allowances for housing and care assistance can, and do, examine open-access web writings such as Facebook posting (or potentially blogging) in an effort to “catch the imposters”.

She writes :

Facebook interactions known to be private and frivolous, have become caught up in a legal and corporate project to define how much disability is requi- red to qualify as disabled….any number of assumptions about what consti- tutes a disability are enacted. More importantly, an underlying concern can be perceived regarding the force with which the boundaries are decided without reflection. I would argue that these moves “discipline” disabled people. In this way, disabled people must perform a strictly defined role. The abilities of a disabled person are rendered suspect…there is no room for grey areas, i.e. the complexity and diversity of impairments that exist in day to day life.⁷

Not only does the threat of surveillance potentially inhibit efforts at textual self-re- presentation but, as Lethwaite astutely points out, narrows what that representation might be.

Writing about the body allows whoever is reading into an intimate space, and although some strangers could do damage to those on whose blogs they lurk, other strangers may be more welcome as readers than those with whom the blogger shares a relationship offline. Because of her quadriplegic partner’s need for greater privacy, a blogger who is herself blind and hearing impaired moved her site to an undisclosed address available only to strangers and only on request. She explains :

About a year and a half ago, D and I had a big argument that resulted in a

“contract.” One of the stipulations on the contract was that I would move the 5. Stephen KuuSiSto, “A Roundtable on Disability Blogging,” in: Disability Studies Quarterly, 2007, 27, 1-2, [online], www.dsq-sds.org.

6. Julie raK, “The Digital Queer: Weblogs and Internet Identity,” in: Biography, 2005, 28, 1, 175. 7. Sarah lewtHwaite, “32 Days Remaining”, [online], http://slewth.wordpress.

com/2011/02/01/who-is-researching-disability-in-facebook.

blog and go anonymous. So, we’re moving. Soon. And if you want, I’ll take you with me. I will pretty much take anyone with me that I don›t know in real life. If you do know me in real life, don’t be offended. It isn’t you, it’s me. Or it is D and his family. It is just that I have to draw the line somewhere and that seems like the easiest criteria to go by. If you are a close friend, don’t worry, I’ll get to you eventually. You probably know everything I write about anyway.⁸

She addresses a mixed readership in this remark, but to announce her imminent move into the sequestered space of a traditional diary, although in this case her future readers will not be the family members or close friends privy to the diary in prior times but the nameless strangers who follow the narrated life of another nameless stranger.

Although concerns for privacy – or the expressed desire to create particular kinds of virtual community – could thus restrict what is written and how, blog- ging nevertheless allows more possibility that readers hear voices that differ from those finding a venue within more traditional media. Just as anyone with a writing implement and an inscribable surface can compose a diary, with some literacy skills and an accessible computer and internet connection, anyone can write a blog. Its capacity to engage a wide readership requires no editorial approval or publisher’s agreement, nor any necessary conformity to certain accepted arcs of plot, levels or types of language, subject matter, or modes of voice. Blogging has allowed a grea- ter participation in life writing by those of limited income or without much formal education, as well as those who are isolated due to a lack of appropriate housing, transportation, or employment. The vlog, or video blog has likewise become a tool for communication and expression among Deaf and other users of signed lan- guages, as the podcast has similarly function for blind and vision-impaired people.

Still, despite the proliferation of increasingly lightweight and relatively inexpensive technology, some potential writers remain “off the grid,” a descriptor I use meta- phorically but which has origins as the description of a household without electrical power or utilities like water or gas, usually because of poverty, geographic isolation, or both. Many recent studies have examined precisely who is “off the grid” of the internet and why, and the barriers are unsurprising: class, age, geography, and fre- quently disability – not only because of inaccessible technology but because people with disabilities are much more likely to live with reduced incomes or in institutions than non-disabled individuals. Many of the blog sites that present fewer difficulties to the novice blogger, like BlogSpot, are also restrictive in design, provide little alternative to a chronological organization, diminish graphic possibilities, and rele- gate hypertext to a few links between portions of conventional text. People with less technological education or financial resources are more likely to depend upon the free and ready-to-use sites, suggesting that again, economic considerations are as critical to a analysis of blogging as to more traditional published forms of life writing: with few exceptions, the disabled lives reflected by the more structurally innovative blogs are those with more mobility, income, independence, and educa- tion than the norm.

The structure of the online medium inevitably shapes the blog in design, voice, and even content. As the size of the pages allotted and the instrument for writing – pencil, fountain pen, keyboard, or voice-recognition software – affects the

8. “Twinkle Little Star”, [online], < http://twinklelittlestar.typepad.com/>.

Elizabeth GrubGeld

paper diary, so do the dimensions and features of the hosting site. It is partly for this reason that I am entirely bypassing a discussion of Facebook. With its enforced word limits and resolutely cheerful affect, it is much too much the controlled pro- duct of its design features to share in the relative freedom of the diary or the blog.

The nature of the writer’s disability is yet another crucial factor in shaping the blog’s voice, structure, and content. The actress and dancer who writes the blog Wheelchair Dancer raises the tantalizing question of whether the text is affected by the specific conditions of impairment. She writes:

When I am looking at the work of other (identified or known to me) disabled people, I eventually find myself wondering about mechanics and logistics.

Even if I don’t know the person, the content of the blog often allows me insight into an individual’s body. I then start to imagine the presence and in- fluence of that body in the text. Was voice recognition involved? How did they tame their Dragon [A voice-activated word processing program]? Did they touch type? Is there a facilitator invisibly present?

“The disabled body,” as Tobin Siebers remarks, “changes the process of represen- tation itself…Tongues touch-type letters home to Mom and Dad. Feet wash the breakfast dishes. Mouths sign autographs. Different bodies require and create new modes of representation”.⁹

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Thus far, I have asked whether audience, access, the mechanics of produc- tion, and even the body of the writer bear influence on the shape of the online diary. A disabled blogger must also negotiate expectations about the structure of disability stories; it is here that I may turn my attention to the narrative models that shape how disabled lives are imagined and represented, as well as the ways blogging in practice both implicitly and explicitly produces new models. The diaristic archi- tecture of the blog encourages significant variations on some of the most common arcs of narrative. In his landmark study of illness and disability narratives, The Woun- ded Storyteller, Arthur Frank creates a taxonomy of the narrative patterns ubiquitous in the stories of illness and disability. His own discussion is both nuanced and flexible, but in what is by necessity a brief and much oversimplified summary, these story arcs may be described in four groupings. The restitution narrative positions as its primary agent the medical profession (or God or a nondisabled helper) and its plotline requires recovery or death; accordingly, we see an abundance of films and books about illness but not necessarily the enduring and often unchanging condi- tion of disability. The chaos narrative presents a tale interrupted, repetitive, circu- lar, and lacking agency. “Words suggest its rawness,” Frank writes, “but that wound is as much of the body, its insults, agonies, and losses, that words necessarily fail”.¹⁰ Narrative position is fragmented: “chaos stories remain the sufferer’s own story, but the suffering is too great for a self to be told”.¹¹ In what Frank calls the quest

9. Tobin SieberS, “Disability Theory: From Social Constructionism to the New Realism of the Body”, in : American Literary History, 2001, 13, 4, 738.

10. Arthur FranK, The Wounded Storyteller: Body, Illness, and Ethics, Chicago, The University of Chicago Press, 1995, 98.

11. Ibid., 115.

narrative, the speaker writes from position of action, seeking an ethical stance from which to achieve a “moral humanity” that works out what role that life story will have in the lives of others, what difference its witness will make.¹² The quest might be highly individualistic or, in the fourth pattern he identifies, it may lead to a reco- gnition of wider purpose and other-directedness as an act as testimony. Although many of the autobiographies by disabled people published in the last two decades provide not only variations but direct refutations of the more limiting arcs of plot, for the most part, stories of illness and disability draw from these four general pat- terns. More often than not, popular renditions of a disabled life feature recovery or death at the conclusion or are private quests in which the disabled person achieves some goal, often the written word, with the assistance of medicine and a teacher, parent, or other nondisabled helper.

What happens to these structural arcs of narrative when disabled writers take to the web for the purposes of self-representation? The author of The Blind Bookworm Blog, Alicia Verlager, discusses her own practice:

The more I blogged about my personal experiences, the more it felt as if my blog was a point of confrontation between the stories I wanted to tell about myself, and the stories other people, including traditional media producers, wanted to tell about me. Blogging has offered me the motivation to develop my own voice, both as a writer and as an individual. “Voice” as both a personal form of expression and an active mode of speaking has always been a focus of my blog. In other words, my blog has emerged as a way of creating revisio- nist disability stories.¹³

To produce and to understand revisionary narratives, structural expectations about narratives must be themselves revised. While many such blogs primarily serve as the basis for small essays on current issues (whether directly related to disability or not), others are predominantly narrative and attempt to chronicle a life enacted. Yet characteristics of the writer’s bodily experience may render a long and fully integra- tive story difficult, if not impossible. A small entry, left unrevised and superseded by a newer one, is more physically feasible for someone who may have limited experience in writing or even access to a computer, or whose writing efforts are circumvented by pain, spasticity, or other problems that discourage longer narrative or discursive units within a text. In Wheelchair Princess, for instance, Emma Crees explains that:

much as I had wanted to keep that diary and write in it all my secrets, like any other teenage girl, my inability to physically write more than a few entries meant I couldn’t express all I wanted. Then in 2000 when I learnt about online diaries, it was a way for that 18 year old to fulfill a long held dream and give

“one in the eye” to her disability. It’s more than that now, and although I have tried several times to give up, I’ve always come back.¹⁴

In conjunction with its still evolving democratic potential, the diaristic aspects of blogging reflect and the daily, uneven quality of living with pain, weakness, or ever-

12. Ibid., 166.

13. Alicia VerlaGer, “The Radical Nature of Telling Stories Through Blogging”, in : Disability Studies Quarterly, 2007, 27, 1-2, [online], <www.dsq-sds.org/>.

14. Emma creeS, “A’ Roundtable on Disability Blogging”, in : Disability Studies Quarterly, 2007, 27, 1-2, [online], <www.dsq-sds.org/>.

Elizabeth GrubGeld

changing symptoms. Although articulating this dailiness in ways that other narrative forms rarely can, such blogs can also create a persona who perceives a lack of inte- grative selfhood or emplotment within the story of his or her life, giving credence to Philippe Lejeune’s question “notre moi, notre intimité ne sont-ils pas façonnés par les moyens d’expression et de communication?¹⁵ Many disability blogs are records of symptoms and various therapies, diaries of surgeries and medicines; interactions with doctors, social workers, insurance company staff, and other representatives of the institutions with whom most disabled people must constantly interact. After pages that detail symptoms and treatments for her generalized dystonia, the author of Dystonia Diary remarks, “Anyway, I’m starting to ramble. I’m tired. Hopefully I’ll have something more coherent to say next time”.¹⁶ Her posts have not rambled; in fact, they are unremarkably uniform. They accurately capture the ongoing necessity for recording symptoms, treatments, and responses, while also articulating the daily bodily self-evaluation that certain kinds of disability require. Yet the author of Dystonia Diary clearly feels that she should be saying more, perhaps a narrative more plotted or comments more philosophical, or at least analytical. Ashley, the author of two blogs about living with a neurological disease that causes chronic pain, also wishes to write self-reflectively and with interest. At several points she laments the way fatigue hampers her ability to write more:

Before I begin the post, an update. The last little bit has been pretty rough. My sleep schedule has gone totally out of whack, my CRPS has been flaring like it never has before and I’ve just been plain exhausted. After trying to get done what I need to in a day, by the time I’m ready to blog I don’t have the energy to do it coherently and I wont subject y’all to my incoherent ramblings that I wouldn’t even remember the next day (yea, the memory loss has been kicking my arse too).¹⁷

Most disability bloggers do not write every day because their bodies get in the way.

Twitter, with its brief update space sometimes substitutes. The mere recording of events, while giving shape to the formless experience of pain, seems not entirely satisfactory to the many disabled bloggers who provide meta-commentary on their entries, although such records challenge the reader to enter the world of the writer rather than confining the narrative, and the narrative voice, to patterns of expe- rience more familiar and more palatable to readers with conventional expectations.

Ashley also has other qualms about the diaristic record of symptoms and treatments. After a long absence from the blog, she explains:

I know I seriously neglected this blog. But I found as I got worse that after living through each day, I didn’t want to relive it again to write a blog entry.

That has changed. I finally have a diagnosis…I’ve been trying to learn as much as I can, but am having a hard time finding personal experiences. So that is what this blog is going to turn in to. I want others to be able to read my expe- riences as I go through the process….I want to update this blog more. I really do. I have 17 saved entries that I never finished. Why? Because I get halfway through and think no one wants to read this! With CRPS [Complex Regional 15. Philippe lejeune, “Cher écran . . .”, in: Journal Personnel, Ordinateur, Internet, Paris, Seuil, 2000, 11. 16. “Dystonia Diary”, [online], <http://dystoniadiary.blogspot.com/>.

17. “The CRPS Girl: One Girl Living with Complex Regional Pain Syndrome”, [online],

<http://thecrpsgirl.blogspot.com/2011/01/this-is-all-real.html/>.

Pain Syndrome], the bad days outweigh the good sometimes and as someone who has an obsessive need to put a positive spin on things, that gives me little writing material. But this isn›t supposed to be a blog about just the good side of CRPS. It is about the entire thing. The downs as well as the ups. So, to catch everyone up to today. I have continued to get worse.

She has reworked the silence of pain and its expression in “chaos narrative” through the rhythm of interruption that is her life, including the interruption from posting in her blog. But like the author of Dystonia Diary, Ashley would like to say more about her life for the sake of others with the same condition who may be reading. Writing about the bad days is also to relive their trauma, and as contemporary research into trauma narrative has taught us, merely reciting trauma may do little to alleviate it and in fact may compound it by adding on another layer of trauma through the experience of articulation, and again in repeating that articulation through rerea- ding what one has written or repeating what one has said.¹⁸ At the same time, a falsely cheerful record of experience would reinscribe the inauthentic figure of the

“plucky cripple,” as the Irish writer Christy Brown once derisively characterized the persona of his first autobiography.¹⁹ And so, Ashley ends her post with that which speaks to the reality of her moment in time: “to to catch everyone up to today, I have continued to get worse.”

Although some disabilities are fairly static in their symptoms and may cause no added impairments beyond temporary side effects of medicines or occasional curable infections, some, like Ashley’s are degenerative. The arc of plot is a kind of reverse quest – it moves from initial strength and mobility to decreasing control and in some cases, premature death. However, a blog format allows for flexible possibi- lities of organization that can provide alternatives to the bad end of the restitution plot, in which things have continued to get worse until the story ends with death.

To draw again from Madeline Sorapure:

Representing the self in a database form—creating and coding information about oneself, populating a database that readers subsequently query—deve- lops and reflects a sense of identity as constituted by fragments and segments, each of which is separately meaningful and equally significant. In an online diary, pieces of information about the self may be brought together in dif- ferent configurations, signifying multiple and shifting ways of understanding the self. Although a print diary is also structured like a database of entries, the self-representation it contains appears to be more continuous and unified by virtue of its being chronologically continuous, bound together in a book or notebook, and read linearly. For online diarists, writing on the computer and publishing on the network, the database form more thoroughly infuses self- representation.²⁰

Eric Doran’s Not Going Quietly explores life with the degenerative disease Friedreich’s Ataxia in an inventive format that exhibits one of the most striking instances of a structural recasting of the narrative of decline.²¹ In Not Going Quietly, the database

18. See for example, Eija Harjula and Timo HeiSKanen, “Trauma Lives in Speech: The Rhythm of Speech Breaks, Words Disappear, A Hole is Torn in Speech”, in : International Forum of Psychoanalysis, 2002, 11, 3, 198.

19. Cited in Jennie morriS, Pride against Prejudice: Transforming Attitudes toward Disability, Phila- delphia, New Society, 1991, 95.

20. Sorapure, 8.

21. Eric doran, “Not Going Quietly”, [online], <http://www.notgoingquietly.com/>.

Elizabet GrubGeld

form includes a “what’s new” category in its contents box that allows a reader to join Eric Doran at his most recent posting; but because he was able to have a website designed specifically for him and is thus not dependent on the rigid format of something like BlogSpot, his entries are not dated, nor do they appear in the order of posting. Instead, the inner world of his blog is entered through key words listed on contents box to the side of the text. Such an index is typical of blogs, but its exclusivity as the sole means to entrance is very unusual. These tags allow him to move out of a linear storytelling into a more lateral arrangement of interests and experiences. This feature is almost impossible to replicate in a printed format, unless the entries were revised and reorganized once the diary were concluded.

The blog itself undoes the deterministic textual dominance of an illness’s progres- sion or a body’s degeneration. Unlike most paper diaries, Not Going Quietly may be entered at any point without the reader having a sense of skipping the beginning;

structurally, it has no beginning, middle, or end. The motion toward death is cir- cumvented narratalogically by the topical and spatial arrangement. By means of this non-chronological “table of contents,” Doran can organize his textual self according to the many places he’s travelled rather than the relentless deterioration of muscular control that is symptomatic of his disease. He is able to recreate him- self as a witty and tough-minded world traveler to Egypt, South Africa, India, and the wilds of Manhattan, as well as a man with strong views on politics, religion, and other matters.

In sum, the blog offers alternatives to conventional representations of disa- bility experience through its ability to negotiate public writing while maintaining authorial privacy and an insistence on the daily that undermines conventional disa- bility emplotment and gives voice to particular embodied experiences. For those able to move beyond the prefabricated architecture of popular blogging platforms, the online diary can, as in the case of Not Going Quietly, circumvent chronological organization in favor of a topical organization that maintains the speaker’s integrity as an ongoing participant in the life of the world. And to both use a genre and to adapt it, to both speak within inherited forms of narrative and to adjust them is to participate in what Shirley Neuman calls “a dialectic between the subject as acted upon and produced by social discourse and the subject as acting change social discourse and, therefore, its own subject position”²², thus establishing agency and voice within narratives that speak both of and through the body’s experience.

Elizabeth GrubGeld

Oklahoma State University elizabeth.grubgeld@okstate.edu

22. Shirley neuman, “Autobiography: From Different Poetics to a Poetics of Difference”, in : Marlene Kadar (ed.), Essays on Life Writing: From Genre to Critical Practice, Toronto, University of Toronto Press, 1992, 223.