Prosuming Identity: The Production and Consumption of Transableism on Transabled.org
Research Interests:
Americanhttp://abs.sagepub.com/ Scientist Behavioral
Prosuming Identity: The Production and Consumption of Transableism on Transabled.org
Jenny Davis American Behavioral Scientist published online 29 December 2011 DOI: 10.1177/0002764211429361 The online version of this article can be found at: http://abs.sagepub.com/content/early/2011/12/15/0002764211429361
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ABSXXX10.1177/0002764211429361American Behavioral ScientistDavis
Article
Prosuming Identity: The Production and Consumption of Transableism on Transabled.org
Jenny Davis1
American Behavioral Scientist XX(X) 1–22 © 2011 SAGE Publications Reprints and permission: http://www. sagepub.com/journalsPermissions.nav DOI: 10.1177/0002764211429361 http://abs.sagepub.com
Abstract Prosumption refers to the blurring of production and consumption. Although this has always been present (Ritzer, 2009), the contemporary era creates an environment in which prosumption can flourish. Specifically, the presence of Web 2.0 has led to an abundance of user-generated content, produced by those who consume it. I wish to argue here for an extension of the theoretical idea of prosumption into the arena of identity. Currently, prosumption is conceptualized in a way that understands as separate the prosumer of content, and the content that is prosumed. I argue that this is a false distinction, as content that is prosumed can also signify an identity for its prosumer(s). I illustrate this argument by qualitatively analyzing the introduction statements, subsequent entries, and public comments of the bloggers and participants on transabled.org, a user-generated website for people who believe that they were born in incorrectly-able bodies. By prosuming the content on transabled.org, members of this online community simultaneously prosume their own transabled identities, and construct transableism as a culturally available identity category. Keywords body integrity identity disorder, prosumption, transabled, wannabe, Web 2.0
Prosumption refers to the blurring of production and consumption. It reconciles the false binary between these two forces, and focuses instead on products that are produced by their consumers (Ritzer & Jurgenson, 2010).1 I argue here, however, that that
1
Texas A&M University, College Station, TX, USA
Corresponding Author: Jenny Davis, Texas A&M University, 311, Academic Building, Texas A & M University, College Station, Texas 77840-4351, USA Email: Jdavis4@neo.tamu.edu
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the current conception of prosumption, connoting a disconnected relationship between people and the things that they prosume, creates yet another false binary—the false binary between objects and subjects of prosumption. In the present work, I argue that prosumed objects can have deep layers of meaning and contain in them identity signifiers for the prosuming subject. I argue that in certain conditions, prosumption moves beyond content, and into identity. I illustrate this point by exploring the ways in which content and identity are prosumed in complex ways by members of an online community both individually and as a collective. Specifically, I conduct a qualitative analysis of the introduction statements, subsequent blog entries, and public comments of the bloggers and participants on Transabled.org, an online community for sufferers of body integrity identity disorder (BIID). People with BIID experience a strong disconnect between a self-image as a person with a physical impairment and a body that is physically unimpaired. Although this phenomenon was first acknowledged in the academic literature almost 35 years ago (Money, Jobaris, & Furth, 1977), it has since received little attention. Rather, there has been only a thin spotting of academic articles and a very small number of (mostly) sensationalist news stories (First, 2005). This condition is not currently included in the Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association, 2000), and so has no official definition. Not surprisingly, the meaning and labeling of impairment desires have been highly contested by scholars, doctors, and those within the transabled community (First, 2005). I point this out to say that there is not an official definition of BIID. Rather, the meaning of transability and an image of a transabled person require explicit articulation. The content of the site, all of which is user generated, works toward this end. As such, the site offers an idyllic example of the connection between the prosumption of content and the prosumption of identity. I begin by delineating an argument for the extension of prosumption into the realm of identity. I follow this with a description of transability and of Transabled.org. Finally, I illustrate the theoretical extension through an analysis of the user-generated content (UGC) that makes up Transabled.org.
Prosumption of Identity
Prosumption, first termed by Alvin Toffler (1980), refers specifically to the blurring of production and consumption in the marketplace. Although prosumption has always been present, contemporary society provides a fertile environment in which prosumption can flourish (Jurgenson, 2010; Ritzer, 2009). This prosumption-facilitating environment is characterized by vast technological growth and the pervasiveness of mediated forms of communication. In particular, Web 2.0, which allows for cyberinteractivity, has led to an abundance of UGC (Beer & Burrows, 2007).
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The pervasiveness of technologies, and the prevalence of UGC, is heavily cited and well explored by theorists of prosumption (e.g., Jurgenson & Ritzer, 2009; Jurgenson, 2010; Ritzer, 2009; Ritzer & Jurgenson, 2010). These theorists (and others) show how Internet users have become responsible for producing that which they consume. Users produce and consume knowledge through Wikipedia, entertainment through YouTube, art and photography through Flickr, communities through social network sites, and travel materials through Yelp (Ritzer & Jurgenson, 2010). These theorists are both insightful and correct in their assertions and are now at a point to be pushed farther. With “pushing farther” in mind, I assert here that prosumption applies not only to things and information but also to the identities signified through them. It is a wellestablished notion that practices of consumption often hold identity meanings for consumers (Bauman, 2005; Horkheimer & Adorno, 1972). We are what we buy, and we buy because of who we are. It requires only a very small stretch (if any stretch at all) to assume that a similar process occurs when thinking about self-produced consumables. I therefore argue in the present work for the extension of prosumption into the arena of identity. This extension, of course, is not ubiquitous. Not all forms of prosumption apply to identity. Rather, prosumption of objects can result in the prosumption of identity only in the following conditions: (a) when that which is prosumed can be connected to the prosumer in a defining way and (b) when the process of prosumption incorporates social interaction. These conditions are rooted in a social psychological (and in particular, symbolic interactionist) understanding of identity. Broadly, identity is not something inborn or essential but is a collaborative accomplishment (Berger & Luckmann, 1966). More specifically, identity refers to an internalized set of meanings attached to the self as a person, an occupant of a role, or a member of a group (Smith-Lovin, 2007). Social actors come to know themselves as holders of particular identities in two related ways: first, by observing what they do (Klein, Spears & Reicher, 2007; Wilson & Dunn, 2004) and, second, by observing the ways in which others interact with them (Burke, 2004; Cooley, 1902; Smith-Lovin, 2007; Stryker & Burke, 2000). As the subject sees hirself engaging in prosumption, and sees the product or content that is prosumed, he or she must therefore be able to connect that process and that product or content to the definition of hirself.2 This also must take place in a social environment, so that others can interact with hir as a holder of this identity. For instance, in fast food restaurants, customers are often asked to add their own toppings and fill their own drinks, making them prosumers of their meals (Ritzer & Jurgenson 2010). This prosumed object (a fast food meal) does very little to define the subject. Moreover, the task is often completed in isolation or with little interaction regarding the construction of the meal itself. In contrast, a Facebook page is expected to accurately represent a bodied being (boyd, 2008; Zhao, Grasmuck, & Martin, 2008). The construction of this page then acts as a reflection of identity or identities, from which the page creator can learn about who he or she is. Furthermore, the architecture of the site is built on interactivity (Davis, 2010), giving ample opportunity for the page
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creator to be interacted with in terms of the identity meanings put forth through hir profile. As such, both a “do-it-yourself” fast food meal and a Facebook page exemplify the practice of prosumption, but only the latter (not the former) exemplifies the prosumption of identity. In general, online communities that center on a shared attribute meet the criteria for identity prosumption. They are social in nature and are created and sustained by their users. To participate is to add to the content of the space. To add to the content of the space is to be a member of the community. To be a member of the community is to connect the identity meanings of the community to the self in a meaningful way. To be accepted or rejected by the community requires interactions that verify or negate the identity meanings associated with group membership. Transabled.org is one such community, and an examination of the site reveals the prosumption of transability.
Transability
So you’ll ask, “That ‘thing,’ transabled, just exactly what is it?” It is hard to define in just a few words, the best way to learn is by going through the site, but in a nutshell, someone who is transabled “wants” to be disabled. But it is not so much a “want” as much as a “need”. Our “desire” is more a reflection of the fact that our self-image is that of a paraplegic (or amputee, or blind, or any number of other disabilities) than that of an able bodied man or woman. (Sean, creator of Transabled.org; emphasis in original) Transabled individuals believe that they were born in the wrong bodies. Their “correct” or “true” bodies are physically impaired in some way. In extreme cases, body modification surgery is sought as a means of matching the physical body with a deeply held self-image. More commonly, transabled individuals act out their impairment desires in less permanent ways, for example, by using a wheelchair or folding an appendage into a piece of clothing to make it appear amputated. Records of able-bodied people who desire an impairment, pretend to have an impairment, and/or are attracted fetishistically to others with physically impaired bodies date back to the 1800s (Bruno, 1997). In 1977, John Money and his associates authored the first academic article chronicling such cases (Money et al., 1977). The article was based on two individuals who intensely desired amputations. This article introduced two key terms: apotemnophilia and acrotomophilia. The former refers to those with a desire for amputation and who have sexual fantasies about their own amputated bodies. The latter refers to an exclusive, fetishistic sexual attraction toward others with amputated limbs (Bayne & Levy, 2005; Bruno, 1997; First, 2005; Money et al., 1977; Smith, 2004). These definitions do two important things. First, they classify the above-mentioned desires as “paraphilia,” or psychosexual pathologies. Second, they limit the pathology to amputation specifically, excluding desires regarding other physical impairments. Both of these assumptions were later contested in the academic and/or the
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transabled communities, resulting in new terminology and a different set of ontological assumptions. The psychosexual classification is most effectively challenged by Dr. Michael First (2005). Using data from an extensive survey of transabled individuals, he reports that the majority of respondents root their desires in a strong disconnect between their selfimages and their physical bodies. Although issues of sexuality are sometimes present, the underlying issue is seen as one of identity. From this study, he introduces the term body integrity identity disorder and connects it specifically to gender identity disorder (GID), an established medical condition in which a person believes he or she was born in an incorrectly sexed body (Lawrence, 2006). The term BIID therefore establishes identity (as opposed to sexuality) as the basis for impairment desires. Currently, BIID is the most commonly used and accepted term, as are the assumptions embodied within it. The exclusive focus on amputation seems to have had a more lasting effect. To date, no academic paper of which I am aware addresses impairment desires outside of amputation.3 This exclusivity is most effectively being combated at the grassroots level by members of the BIID community. Transabled.org and its founder (Sean) have been particularly instrumental in this regard. This is exemplified by the term transabled, coined by Sean, which he says is a demedicalized counter to BIID and encompasses the full range of impairment desires, including paraplegia, quadriplegia, blindness, deafness, and so on, as well as the desire for amputation. In addition, the BIID community has a full set of lay terminology that it frequently uses to describe its condition. People who experience a strong desire for a physical impairment are often called “wannabes.” People who act as though they have a physical impairment (e.g., by using a wheelchair) are called “pretenders.” Those with fetishistic sexual attractions toward the physically impaired bodies of others are called “devotees.” These categories are not mutually exclusive. Wannabes are sometimes devotees and are quite frequently pretenders. For example, a wannabe may satisfy hir need to be paraplegic by using a wheelchair as a means of transportation (i.e., pretending). He or she may also be a devotee, experiencing strong and possibly exclusive sexual excitement for men who wear leg braces, are missing limbs, and so on. It should be noted, however, that although the categories are not mutually exclusive, they are not necessarily always experienced together. In particular, the sexuality component is highly contested and highly variable among transabled individuals.
Transabled.org
Transabled.org is an online space designated to the discussion of BIID and the sharing of autobiographical BIID experiences. The site was officially created by Sean in 1994 and then recreated in its current form in 2005. Sean is a self-described transabled individual who needs to be paraplegic. The primary purpose of the site is to provide a space in which transabled individuals can share their stories and experiences. In
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addition, the site provides information for open-minded outsiders who are curious to learn more about BIID. Transabled.org fits Denzin’s (1998) definition of an online community: It has regular members, its own vocabulary, leaders, newcomers, posting norms, and acceptable and unacceptable topics for discussion. The site is based on blog entries written by a set of regularly contributing bloggers. The architecture of the site provides a space for blog posts to be commented on. The comments are public and can be posted by anyone (one does not need to be registered to the site to leave comments). In addition, blog authors can be contacted privately through e-mail. Along with blog entries, the site provides a host of information about BIID, including links to and from other BIID-related sites (e.g., http://biid-info.org/Main_Page). Interestingly, there is a tab for “photos,” which does not connect to images but instead leads to a statement informing the reader that this is not a space for voyeurism. The statement works to explicitly define Transabled.org against other sites that are created for devotees (people who are fetishistically attracted to physically impaired bodies). The following link provides a synopsis of the site, written in Sean’s own words: http:// transabled.org/about#site. Importantly, this site straddles a line between autobiographical honesty and strict anonymity. Because of the sensitive nature of BIID, participants are not expected to reveal identifying information (e.g., geographic location, actual name, pictures etc.). At the same time, participants are expected to be honest about their experiences with BIID.4 This delicate balance is articulated by Sean and Chloe in the following blog post and comment exchange: This site . . . [is] the only place where I can really be myself and express . . . who I am. I may be changing a fact here or there. I might not give my real name. I am a bit vague about some details of my life. But that is “fluff”, unimportant data. The important core is all real, honest . . . I think a majority of people participating here are also honest in that sense. (Sean) I agree, Sean, this is a wonderful place to be brutally honest about ourselves. The deep emotional truths are what matter. (Chloe) Transabled.org, as an attribute-based community, is a rich site of identity prosumption. The site and its content are fully user generated. Members of the community therefore produce the content they consume (Ritzer & Jurgenson, 2010). This content is autobiographical in nature. Moreover, because transability is highly stigmatized and obscure, the content of the site does the work of defining transability, generally, and delineating, through example, what it means to be a transabled person. Prosumption of this content therefore holds identity meanings for those who prosume it. These identity meanings are constructed and reinforced socially as members of the community respond to one another through public comments and private e-mail exchanges.
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Method
Data for the present work were collected and analyzed between March 2009 and April 2010. Data were derived primarily from three sources: bloggers’ introduction statements, their subsequent blog posts, and interactions taking place through public comments on Transabled.org. These data were further contextualized by time spent on other BIID-related interaction forums as well as informal communications (via e-mail and instant messenger) with members of the transabled community. Because of the paradox between the sensitive nature of the data and the public accessibility of it, issues of ethics required significant attention. The site is a public domain, and its content is publicly available. Legally then, I could “lurk” on the site as an invisible researcher (Gatson & Zweerink, 2004). However, I felt it ethically necessary to announce my presence and give community members an opportunity to remove themselves from the sample. I began by contacting Sean, who asked me to write a blurb about my research that he would post to the site. I did so. Our exchange, along with the affiliated comments, can be seen through the following link: http://transabled. org/administrativia/lets-help-this-phd-student-with-her-research.htm Introduction statements, which I coded systematically, are often the first entry a new blogger writes. They include historical autobiographies and are intended to situate new bloggers in terms of their BIID experiences. There are currently 22 regularly contributing bloggers on Transabled.org who have introduction statements. These statements range in length from 632 words to 2,259 words. In my coding of introduction statements, the goal was to find patterns among individual narratives (Cortazzi, 2001). In pursuit of this goal, I read each blogger’s introduction statement closely. From this, I created an initial set of categories. I read the statements a total of three times, each time refining, combining, and/or shifting the categories. After the final reading, each strip of narrative (i.e., each sentence or group of words expressing a complete thought) fit into at least one category, and I was unable to create any new categories. In addition, I read through, examined, and wrote extensive field notes on the full archive of subsequent blog entries and public comments. These entries span a 16-year period (1994-2010). I focus my analysis most specifically on the blog entries and comments beginning in 2005. I do this because 2005 is the year that the site took on its present format and started including multiple blog authors. I triangulated the data by comparing the categories formed from introduction statements with data from subsequent blog posts, public comments, interactions on other forums, and interactions with members of the community (Golafshani, 2003). Furthermore, I offered my analysis to participants on Transabled.org and requested feedback. Although there were no requests to see a final paper, some did ask about my findings. I shared with them the themes that emerged through my analysis. Those with whom I communicated provided positive feedback, strengthening the “trustworthiness” of the data presented herein (Creswell & Miller, 2000).
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I approached the analysis from a Geertzian interpretive perspective, working from both the top down and the bottom up (Geertz, 1973). Geertz (1973) reminds us that no scholar enters into the field empty-handed; he or she comes in armed with the knowledge produced by scholars who came before. At the same time, he or she stresses the importance of experience on the ground level as expressed through the voices of participants themselves (Geertz, 1973, pp. 17-21). With this in mind, I analyzed BIID narratives while keeping in mind existing work on narrative identity construction (e.g., Mason-Schrock, 1996), BIID (e.g., First, 2005), prosumption (e.g., Jurgenson, 2010; Jurgenson & Ritzer, 2009; Ritzer, 2009; Ritzer & Jurgenson, 2010), and identity-based online communities (e.g., Adler & Adler, 2008). At the same time, I paid close attention to the words of transabled bloggers themselves and the ways in which they fit within, altered, and/or deconstructed existing frameworks. Overall, these data represent a process of systematic coding, interpretive ethnography, and informal communication—all of which were framed theoretically and situated empirically.
Prosuming Transability
Attribute-based online communities are an important means of prosumption in the contemporary era. The absence of geographic barriers allows dispersed individuals to come together and celebrate, discuss, deconstruct, and/or learn more about a shared way of being. Moreover, because of the anonymity and disembodiment facilitated by online interaction, cyberspace provides an optimal setting for communities to form around identification with a concealable stigma (Goffman, 1963), one that is often kept hidden in offline interactions (Adler & Adler, 2008). It is therefore through online communities that marginalized and/or stigmatized members of society can join together, construct collective spaces, and embed themselves within anonymous networks of support and affirmation (Adler & Adler 2008; Durkin & Bryant, 1995; Durkin, Forsyth, & Quinn, 2006; Jenkins & Thomas, 2004; Leiblum, 1997). Transabled.org can clearly be seen as one such space. The following analysis illustrates the prosumption of transability by bloggers and participants on Transabled.org. I split the process into four segments, discussing each one in turn. The journey begins with the consumption of transabled narratives written by others, as newcomers read through existing blog posts and find themselves within the words and stories that make up the site. Next, new bloggers produce their own identity narratives, telling their own stories of a life with BIID. These narratives are commented on in affirming ways by established transabled community members. By consuming their own transabled identity narratives, and the affirming comments on them, bloggers are able to prosume a transabled identity, establishing themselves as transabled individuals and acting accordingly. Finally, through the prosumption of the site itself, through the voices of individual community members, and through the collaborative voice of the community as a whole, transableism is constructed as an
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identity category, adding to the abundance of identity categories culturally available for consumption. The analysis is therefore formatted to follow the journey of identity prosumption, beginning with the consumption of others words and ending with the production of a consumable identity category (i.e., transableism). It is important to note, however, that I use this presentation format solely for purposes of clarity. In practice, the prosumption of identity need not (and likely never does) take place in linear and/or isolated ways.
Consumption of Existing Transabled Narratives
Narrative is a common mechanism by which social actors make sense of messy and fragmented realities in linear and coherent ways (Cortazzi, 1993, 2001; Reissman, 1993). Identity narratives allow actors to emphasize certain events or aspects of the self at the expense of others and to sequence their experiences in a causal manner (Brown, 1998; Erikson, 1995; Grecas & Burke, 1995; Hoschild, 1983; Mason-Schrock, 1996;Snow & Anderson, 1987; Turner & Gordon, 1981). The narrative construction of identity is an inherently interactive and social process. Not only do social actors need affirming feedback for their own narratives, but they are also reliant on the narratives of others (Mason-Schrock, 1996). Since transableism is a relatively obscure way of being, newcomers to Transabled. org often begin by discovering, first, that transableism exists and, then, what it means to be a transabled person. They do so by reading through the content of the site and, more importantly, through the existing blog posts (i.e., identity narratives) of established community members. These texts and images not only are produced and consumed by community members (Jurgenson, 2010; Ritzer & Jurgenson, 2010) but are used by newcomers as nourishment to fuel their journeys toward self-discovery. The articulation of this consumption, and its impact on the consumer, is seen primarily in two places on the site: (a) in the comments of newcomers on the posts written by established members and (b) in introduction statements as the beginning of a blogger’s path toward a transabled identity. Oftentimes, guests of the community comment on a blogger’s post to say that the words of this blogger, and other bloggers on the site, speak to them in some way. They indicate that by consuming the content produced by others, they discovered themselves. For example, Tom, a future blogger for the site, contributes to the forum for the first time in response to a blog post written originally by Marie. Wow . . . I have read all the above and I take it in. I have quite a bit of thinking to do, and a lot of accepting . . . Of myself. So I should accept my “funny” desire to be one handed? I should accept that this is a serious condition called BIID? . . . I’m over 40 now, and it is about time I got down to it: it won’t go away. This discussion is somewhat of a echo of my life so far, an alternation of:
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By articulating the way in which they found themselves through the consumption of existing narratives, newcomers, like Tom, connect themselves to the community and its members. Moreover, by making these articulations in written form within the space of the site, they effectively produce the content that makes up the site. In turn, established members consume the comments and blog posts of newcomers and, in doing so, are able to reinforce transability as a legitimate identity for themselves. As such, Tom’s comment is met with affirming feedback from established community members. They break from the specific topic of Marie’s original post and respond directly to Tom. In doing so, they verify that he is not alone, that his selfdiscovery was inevitable, and that he is, like they, a transabled individual. My heart sank a little just reading your post Tom. That creeping, horrifying realization that this problem isn’t going anywhere . . . it’s nightmarish. On the other hand it’s extremely comforting to know other people are out there dealing with the same thing. Good luck to you. (Sarah) Tom, it’s not easy getting to that point, but it makes a difference, releasing the weight. Welcome to the journey. (Sean) Tom articulates self-discovery and self-acceptance through the consumption of others’ narratives. This articulation of self-discovery becomes part of the content of the site, which is then consumed by established members and acts as in impetus for response. Tom’s comment provides for established members a looking glass against which they can reaffirm their own identity meanings (Cooley, 1902). Their affirmations of Tom’s transabled identity are therefore also reassertions of their own. Newcomers’ introduction blog posts are a second place in which the consumption of others’ narratives is often articulated. Here, new bloggers not only declare their entrance into the community but describe the way in which this entrance was facilitated through the consumption of existing content on the site, again, connecting themselves to the content in a meaningful way. Finding information about others with similar thoughts and feelings, now made me realize that all those early memories in my life were probably the unavoidable start for my disability. A disability that I think I was born with, and I found a name for here—Body Integrity Identity Disorder. (Mary, introduction statement) I am systematically going through and trying to read every post and every comment on the site. As I read other’s thoughts and stories, I have found myself
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Davis thinking, I did that too! I did THAT too! . . . Breathe another sigh of relief that I am, in fact, NOT alone. (Ada, introduction statement)
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Here again, we see that established bloggers respond by commenting on the new identity revelations in affirming ways. Chloe, for example, is an established blogger on Transabled.org who produces this comment in response to Silent’s introduction post. Once in a while somebody writes a post that starts me crying (not a bad thing). This is one such. Is it because I see a part of my soul reflected in the mirror? It is that, but it is more than that. It is because you are out there, a real person. I understand everything you say, and because of that I know you understand me too. After decades of feeling alone, the knowledge that I am not alone is still overwhelming. Thank you for breaking your silence. I also send you a big hug. The kind with tears, that lets you know that you are truly not alone. (Chloe) By consuming the content of the site—made up primarily of the autobiographical identity narratives of others— newcomers find a name for themselves and are able to attach meanings to that name. Existing content provides a framework with which to make sense of newcomers’ own experiences and a model on which their own identity narratives can be based. Furthermore, these public proclamations of “finding” one’s own identity in the words of others become consumable content on the site. This consumable content not only reinforces the identity meanings of established members but also establishes transability as a shared way of being. These identity claims are therefore products of, and act as an impetus for, interaction. The asynchronous nature of the interaction makes it no less meaningful. Rather, it is this asynchronous interaction that creates a mutually verifying situation (Burke, 2004). The new content is specifically connected to existing content, which in turn connects the lived experiences of the newcomer to the lived experiences of established bloggers—and connects both to the meaning of a transabled identity exemplified and prosumed through the site. In the following section, I discuss how new bloggers add further to the content of the site, and deepen their connection to it, by producing their own indepth identity narratives.
Production of Verifiable Transabled Identity Narratives
All online communities (and all communities in general) set out explicit and implicit criteria to determine who is, and who is not, a legitimate member (Williams & Copes, 2005). Existing narratives, along with other content and links on the site, work to express these criteria on Transabled.org. In the previous section, I showed how newcomers consume the content of the site and connect themselves to it. In this section, I explore more in depth the public proclamations of a transabled identity. I show how
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new bloggers, having found a name for themselves, and having learned through others’ accounts what it means to embody that name, begin to chronicle their own stories and produce their own transabled identity narratives. The construction of a transabled identity narrative is crucial in the process of prosuming a transabled identity. As stated above, one way in which we come to know ourselves is by observing what we do. Writing about one’s identities and sharing it publicly on the web is therefore an important tool of identity construction and selfdefinition in the contemporary era (Weinberger, 2002). To participate on Transabled. org, and to produce a public, written, narrative that proclaims oneself to be transabled, is to engage in behavior that allows an actor to see and define hirself as a transabled person. For prosumption of a transabled identity to be complete, however, this narrative must be accepted by others within the transabled community. Just as the new blogger works to connect hirself to the existing content of the site, and to the people who produced that content, established community members must be able to connect themselves to the content produced by the new blogger. As such, bloggers adhere to a shared script or shared narrative. The shared narrative adheres to a larger picture of transability—a picture that is articulated through individual experiences. The larger picture conveyed through the shared narrative on Transabled.org is that of a deeply held identity that is disconnected from the physical body. This body-identity rupture is specifically articulated by combining several of the following components: locating evidence of transability in childhood, painting a precise picture of the “correct” body, expressing an existential connection to proper embodiment (and existential strife caused by incorrect embodiment), and early denial of transability, followed by an ultimate surrender. Although not all of these components must be conveyed as part of the experience for all bloggers, these are the most common tools used to express the transabled experience. Many of these components can be seen in the introduction statement of Elizabeth. With an abbreviated version of her introduction post, I show how the shared definition of a transabled identity is imputed to the self through an idiosyncratic telling of a life story and how, in doing so, a verifiable transabled identity narrative is prosumed. It’s been two months since I started wheeling. Two months of waking up in the morning and looking forward to a new day. Two months of living, not just existing. Two months feeling really me . . . I grew up being taught to never look at a person with a disability. My mother would use the term “invalid”, wheelchair users were just tragic people for her. Yet I never bought it as a kid. I was fascinated by amputees. My favorite movie was about a wheelchair user. I would pretend at home to be an amputee when nobody was around. I must have been maybe nine when I started. When I was thirteen, little pretending wasn’t enough. I needed to compensate more. I started daydreaming. . . . Once at university, I kept dreaming, it became a daily habit and I would live stories in my head. . . . Once I got married and had children, my daydreaming intensified even
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Davis more. . . . About half a year ago, I watched a movie where they named the reason why a person tried to amputate his leg. OK, there comes Google and transabled.org. and for the first time in my life, somebody made sense, somebody (Thank you, Sean) spelled out my feelings. I was not the only one. Wow! I don’t care if I am crazy or not. I am not in it alone. . . . As I started reading more and more, I decided to stop fighting my BIID. I decided to embrace it and to live it. Because without living my BIID, I am not able to live. Period. . . . I can live only as myself. And a big part of me is that I have BIID. (Elizabeth, introduction statement)
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Elizabeth’s depiction of her experiences adheres to the accepted script adopted and used by the prosumers of Transabled.org. As such, her narrative is met with identity verifying feedback. This post elicited a total of 15 comments. The following are a few examples that convey the overall sentiment of the comments as a whole. Wow, apart from the fact that you’ve been able to start openly wheeling it’s like you just wrote my story up there. (Beth) So glad you found us! Many have lived your story, but few can articulate it as well as you have. (Brice) WOW that sounds so much like me! That was pretty much me about 4 years ago. You would not believe where this has taken me. (Claire) As noted above, newcomers first learn what it means to be a transabled person by consuming the existing content on the site. The newcomer is then guided by others’ autobiographical accounts as he or she articulates hir own lived experiences. Therefore, although these articulations are attributed to a single person, they must be understood as jointly authored (Orgad, 2005). This joint authorship allows the new blogger to connect hirself to the community and allows established community members to connect themselves to this newly produced content. As such, the established members who respond to Elizabeth’s narrative not only reinforce the transabled identity of this newcomer but also reinforce their own identity meanings. Moreover, the introduction statements and subsequent comments become content on the site, produced by and for the consumers (Ritzer & Jurgenson, 2010). I will show in the following section how the prosumption of this content leads ultimately to the prosumption of the identity signified by it (i.e., a transabled identity).
Prosuming a Transabled Identity
Through reading others’ narratives, seeing themselves in these narratives, establishing themselves as bloggers on a transabled site, producing transabled identity narra-
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tives of their own, and receiving identity verifying feedback, bloggers prosume a transabled identity. This is shown in two main ways. First, this is seen is through the tangible decisions that shift bloggers’ everyday lives to be more in line with their new identities. Second, this is seen is in the way that bloggers juxtapose the “true” identity enacted on Transabled.org against the empty performances enacted for those from whom their transability must remain hidden. Since people act in accordance with their self-identities and, relatedly, define themselves by what they do (Goffman, 1959) many bloggers find it mentally and existentially necessary to enact impaired embodiment. The process by which a newcomer prosumes a transabled identity, and makes life decisions in accordance with this new identity, can be seen in the progression of Claire from a blogger who does not use a wheelchair to an at-home wheelchair user and, finally, to a public wheelchair user. The following comes from Claire’s first post on October 16, 2006: I have started up several private conversations with other people who have BIID. I’ve found out a few things from these people. . . . There are BIID sufferers out there who . . . pretend regularly or even constantly in real life, something I’ve always wanted but never had the guts to do. (Claire) On this post, Claire received 28 comments, all of which affirm her story as that of a transabled person and encourage her to begin “pretending.” She continues to post regularly, and by October 23, 2006, makes the decision to purchase a wheelchair for at-home use. At first, getting a [wheel]chair was unthinkable. For so many reasons. I had a major problem with the whole issue of pretending. I just couldn’t do it. And then as my BIID got worse, and I got to know other pretenders, and how they say it helped, and they changed my perceptions about what “pretending” really is. It’s therapy. It doesn’t matter if society doesn’t understand it. It’s therapy anyway. It can help with my feelings. Help me to feel more complete. (Claire) She continued with at-home use only for several months. However, in continuing to post, comment, and read content on Transabled.org, she came to desire more. The following is a comment written by Claire in response to Sophie, an (at the time) almost-full-time wheeler who wrote a post about the discomfort experienced when she was unable to use her wheelchair on one particular outing. I can’t help feeling that I wish I was in a position to know what that feels like! There is nowhere that I “usually wheel” except alone in my office. I’m a bit envious. (Claire) Then, in August of 2007, Claire contemplates wheeling on a more regular basis.
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Davis An opportunity is coming up that would allow me to use my wheelchair regularly, in public, in the open. I’m going back to school. No one will know me there, although there’s a chance, even a probability, that someone I know will see me there one day eventually. So the question is . . . should I do it? . . . I guess it will come down to which is stronger; the fear of exposure and being thought of as weird in some way, or the desire to wheel with the peace and wellbeing that comes with it. (Claire)
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Her post receives several comments—all of which encourage her to wheel. The overarching message of these responses is that she is a transabled person and that transabled people, when given the opportunity, should fulfill their desires as closely as possible.5 This message is seen in the following examples: You haven’t wheeled full time yet and it would be a great opportunity for you to better get to know yourself in the BIID sense. Try looking at it from a future where you did not wheel. How would you feel always wondering what it would have been like to wheel full time? (Rorschach) I’d say DO IT! I’d kill to have that opportunity. I’m well on my way to becoming a full time AFO [ankle-foot orthotic] wearer. I’ve been wearing it for a week now and I’m already much happier. (Stumpy) Claire does, in the end, decide to wheel full-time at school. She shares this decision, and her experiences as a full-time wheeler, in an entry posted a few weeks later. Although she describes certain difficulties, she reinforces wheelchair use as the best option for someone like her—someone who is truly transabled. I did, in fact, start wheeling at school. . . . I’ve mentioned before what it feels like for me to wheel—I feel good about myself, I feel positive, I feel relief from the pain caused by BIID. . . . What I didn’t bargain for was just how much the fear of “what if someone sees me” was going to affect me. . . . My love of wheeling is undiminished but the anxiety of discovery is no joy ride. But if I give up now, then I will have lost a lot of hard-won ground. I’ve made it this far. People at school know me as a wheeler. BIID is forever, and stopping wheeling isn’t going to make it go away. At this point, Claire shows the prosumption of a transabled identity. Not only does she behave as a transabled person would (i.e., wheeling when given the opportunity), but she is also willing to put up with other hardships for the opportunity to do so. By sharing these experiences publicly on Transabled.org, she further prosumes not only the content of the site but the meaning of transability and her own transabled identity.
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This identity is reinforced as she continues to prosume the content of the site, including rereading and commenting on her own earlier contributions. The following was written by Claire in January of 2008 in reference to her original comment on Sophie’s 2006 post cited above, which, at the time, incited envy from Claire. Just read this. Over a year later, I am now in that position [to have a place where I wheel regularly]. How hilarious is that? (Claire) In turn, Sean reinforces Claire’s transabled identity and her behaviors that reflect this identity. Not hilarious at all, actually. It’s good stuff :) (Sean) Claire, and others like her who are able to “pretend” (either full-time or part-time), are considered by some to be the “lucky” ones. Others are unable to do so because of prohibitive life circumstances. Most frequently, these circumstances entail interpersonal relationships and/or careers that bloggers feels will be irrevocably damaged by openly acting on their impairment desires. For these participants, the successful prosumption of a transabled identity is articulated by lamenting this unfortunate situation and explicitly juxtaposing the “true” identity that they enact on Transabled.org against the empty performances required for the rest of the world. This site has been a refuge from personal demons that I know I can’t talk about to anyone else. You have provided means for people like us to speak out and address what we want and feel. . . . I come here often to read Sean’s entries and the comments and the essays of others. Even when I don’t say anything, it always helps to read the thoughts on transabled.org. (John) With BIID, the numbness goes beyond the legs. It seeps into my emotions . . . I continue to hide this thing from family and friends, and I don’t know how long it will take before I am open about it. . . . I wandered in [to Transabled.org] through a link and I never left . . . it’s making the numbness feel not so shameful. (Eric) In sum, the prosumers of Tranasbled.org prosume not only the content of the site but also the transabled identity signified by that content. They are able to do so because the content of the site is connected to the self in a meaningful way, and the prosumption of the content takes place in a social environment, where mutually verifying interactions take place. The successful prosumption of a transabled identity is shown in the actions that participants take in response to their evolving identity meanings and in the designation of Transabled.org as a sanctuary where one’s true identity can finally be expressed. The public documentation of these thoughts and experiences not only
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reinforces an individual transabled identity but, taken together, works to further define and reinforce the meaning of transability as a consumable identity category.
Prosuming Transableism Into a Consumable Identity Category
Thus far, I have discussed the ways in which transabled bloggers consume the narratives of others, find themselves in these narratives, and then produce their own. It is through this process that bloggers prosume transabled identities for themselves. In this final section, I argue that the collective voices of the bloggers who prosume the site Transabled.org (and other related sites) work to prosume transableism into an identity category that is culturally available for consumption. A defining characteristic of prosumer culture is an abundance of content, as users create material through highly accessible and pervasive technologies (Ritzer & Jurgenson, 2010). I argue that just as content is created in abundance through a prosumer culture, so too are identities. Theorists of the contemporary era argue that identities are infinite in category and treated as commodities to be consumed at rapid pace (Baudrillard, 1970/1998; Bauman, 2005; Mestrovic, 1997; Reismann, 1953). This is intertwined with the material reality of technological advancement, which allows individuals to transcend geographic barriers and create communities around innumerable (and often highly specific) commonalities (Miller & Slater, 2000). In the introduction to this piece, I noted that BIID is highly obscure and lacks an official definition and, as such, requires that a transabled identity be explicitly articulated. I will point out here, however, that this is slowly changing. It is changing in large part, I argue, through the prosumption of content and identities in communities such as Transabled.org. The increasing presence of transableism can be seen in the growth (albeit slow) of academic work in the past 5 years (see Stirn, Thiel, & Oddo, 2009), the presence of BIID in the popular news media (e.g., Elliot, 2000; Friedman, 2008; Henig, 2005), and the consideration of BIID as an illness to be included in the newest version of the DSM (DSM-V; see Bayne & Levy, 2005). This increasing presence implies the construction of an identity category culturally available for consumption. In what follows, I document two examples of how Transabled.org has played a role in BIID’s expanding presence and its transition into a consumable identity category. A particularly poignant example can be seen in the connection between Transabled. org and Carlos Brooks’s film Quid Pro Quo, which chronicles the story of a BIID sufferer with a professed need for paraplegia. In several interviews, Brooks says that he decided to make the film after coming across transabled communities online and learning that the condition existed. He then extensively studied these communities prior to making the film (e.g., Singer, 2008). More explicitly, on the film’s official Wikipedia and Facebook pages, links are posted specifically to Transabled.org. Sean even finds his exact words, as written on Transabled.org, being spoken by characters in the film.
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American Behavioral Scientist XX(X) It appears he [Carlos Brooks] has used some of my stuff. The Seattle Times quotes one of the characters as saying “I want to know what it feels like not to feel”. Guess what? That’s MY line! I’m not precious about it. I’m actually rather glad my, our, material could be used like that. (Sean)
The label and meanings of transability were therefore lifted from the local space of Transabled.org, where they were prosumed by bloggers and participants and rebroadcast in cinematic form. The film, and the subject matter, were then talked about in interviews, blogged about by reviewers, and discussed interpersonally. This rebroadcasting via multiple media extended the term and its meanings to a wider audience and introduced to this audience a way of being (i.e., transabled) that previously may not have existed for them. A second example of Transabled.org’s role in the prosumption of transability into a consumable identity category can be seen in the potential for BIID to be included in the upcoming DSM-V. Inclusion in the DSM would not only create the potential for material resources (e.g., insurance coverage for treatment) but grant those who suffer from the condition a sense of legitimacy. This is a frequent topic of-discussion on Transabled.org, and many members are active in trying to promote BIID’s inclusion. In the following exchange, Sean urges members of the community to extend their voices and contact the DSM-V Task Force. Having BIID documented would . . . ensure us a certain level of legitimacy. Too many people are saying we’re “just sick”. Being able to point to the DSM and say “yes, we are, but it is not just a fancy, a fantasy, or an invention, it is a REAL condition” would be very helpful. . . . And so I invite you to write comments in support of the inclusion of BIID in the DSM. (Sean) Other members of the community contribute comments that affirm Sean’s position, take action themselves, and ask others to do the same. Please make a submission, this is too important not to. It’s a huge step forward regardless of semantics. Whether you like to label yourself as having a mental illness or not we need official recognition to get out of this never ending rut of research that doesn’t go anywhere. (Sophie, comment on Sean’s post) I’ve submitted an entry . . . asking that they consider BIID at length, to overcome the “You want WHAT?!” reaction. (Gravity, comment on Sean’s post) Importantly, exchanges such as these are not one-sided. Dr. Michael First, a leading BIID scholar and a member of the DSM-V task force, has been in contact with Sean and other members of Transabled.org and has recruited on the site for a new study that he is conducting about BIID (see note 3). The voices of the transabled community are therefore reaching the ears of policy makers and working to legitimize a transabled identity in a highly material way.
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Overall, the content being prosumed on Transabled.org goes beyond the words and images displayed on the website. Rather, these words and images act as inspiration for products of popular culture, news stories, academic manuscripts, and even definitions of mental health and illness. Through the collective voices of this site (and other similar sites) BIID (or transableism) is entering into the public vocabulary. By making it visible, and giving it a name, sites such as Transabled.org and the bloggers who prosume them are constructing transableism into a consumable identity category, adding to the abundance of identity categories culturally available in the contemporary era. I would like to conclude with a note about possible directions for future prosumption research. I focused here on a relatively obscure and stigmatized way of being. However, it is important to note that the connection between identity and prosumption is far from exceptional. To illustrate the pervasive presence of identity prosumption in the mundane spaces of everyday life, future work might look at the ways in which identity is prosumed in very mainstream ways on social network sites, personal interactive homepages, and/or gaming communities. Acknowledgements
I would like to thank James Chouinard, Sarah Gatson, Jane Sell, Nathan Jurgenson, and the anonymous reviewers for their contributions to this manuscript. I would also like to thank the bloggers at Transabled.org for sharing their stories.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
Notes
1. It should be noted that this binary is not always false. In many cases, the producer is distinctly separate from the consumer. This separation is exemplified in factory workers who are unable to afford that which they produce. 2. I use hir as a gender-neutral term. I do this because the site of study emphasizes inclusivity and often uses gender-ambiguous language. However, many bloggers self-identify as either male or female, and I refer to them in terms of their own self-designations throughout the work. 3. From discussions taking place on Transabled.org, it appears that Dr. Michael First is in the process of collecting data for a study on BIID that includes a wider range of impairment desires. 4. In the 16 years of blog posts, there was only a single case of an explicit violation of the autobiographical honesty norm. In this case, Matthew took the story of another transabled person and attributed it to himself. This indiscretion was recognized immediately by Sean, who publicly reinforced the norm by responding with the following comment:
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@ Mathew . . . Fiction is good, but doesn’t have its place in the comments section of this blog. Please refrain from posting these stories here. There are better places to exercise your prose. Thank you.
5. I say “as closely as possible” because for many people with BIID, acquiring their desired impairment is the only way in which their need will truly be fulfilled.
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Bio
Jenny Davis is a doctoral candidate in the Department of Sociology at Texas A&M University. She studies issues of self and identity within a technologically connected culture.
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Prosuming Identity: The Production and Consumption of Transableism on Transabled.org
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