Description of Work:
I’m currently working at the intersections of posthumanism, and the rhetoric of medicine and technology. This work aims to understand the material-discursive practices involved and produced by cyborg bodies, identities, and discourses. In other words, I’m interested in understanding how patients negotiate the integration of medical technologies into their lives and identities.
Specifically, I’m working on a mixed-methods study of people with Inflammatory Bowel Disease (IBD) to explore how this community communicates with and about IBD and the technologies associated with IBD (e.g, ostomies and other internal technologies such as the j-pouch). In so doing, I have spent the last year interviewing, surveying, and observing people with IBD. I am also working to complete a social media analysis of blogs, tweets, and popular news articles surrounding this community as over the last two years, thousands of IBD patients worldwide have participated in the #GetYourBellyOut and #IBDSelfie to raise awareness and advocate against the negative stigma surrounding IBD. I’m still in the preliminary stages of the project and will be completing another round of data collection this fall.
Ultimately, the goal of my research is to not only contribute to the scholarly conversations regarding medical technologies, but to also find productive ways of using my work to intervene and contribute to IBD patients and chronically ill patients, more broadly.
Making the Invisible Visible: Redefining Wearable Technologies through Chronic Illness Advocacy
The proliferation of new technologies such as Fitbits, Google Glass, Nike’s Fuelband, and the Apple Watch requires scholars of health and medicine rhetoric, health communication, and technical communication to consider new notions of wearable technologies that focus primarily on the intersections of data, quantification, and materiality (Ananthanarayan & Siek, 2012; Rettberg, 2014; Lee, 2013; Pederson, 2008). Certainly, these issues are central to many of the newest and most popular wearable technologies, but as these gadgets reshape our definition of technologies, they also constrain our ability to fully understand what “wearable” technologies might mean. That is, the emphasis on these popular emerging technologies encourages us to focus on accessory technologies like Fitbits or Google Glass that are both optional and removable. Such a focus, however, elides broader inquiry into wearable technologies that are permanent and medically necessary. If, instead, we examine the full range of such technologies, then we can better understand the reciprocal entanglements of humans and technologies manifest by wearablity.
One example of a more permanent wearable technology is the ostomy pouch. Ostomy pouches must always be affixed to the body and do not work to analyze calories or access the internet. Instead, ostomy pouches function as an exterior colon—that is, ostomy pouches are used when patients (usually those with Inflammatory Bowel Disease or IBD) must have part or all of their colons removed due to disease, perforation, or dysfunction. Like the more popular wearable technologies, ostomies work in ways that change bodies and challenge identities. However, these technologies are not optional and therefore, exploring them provides very different insight into the function and effects of wearable technologies. For instance, the entanglement of identities and technologies manifests much differently for patients who have the option for “ostomy takedown” (removal of the ostomy to be replaced with an internal technology), than for patients who have permanent, non-removable ostomies. These entanglements have profound impacts on identity, self-perception, and self-presentation, and ultimately challenge posthuman rhetorics focused entirely on optional accessory technologies. Even more, while ostomies do not work to quantify, analyze, and share health information in the form of medical records or statistics, they do, in fact, share health information in that they make visible disease that otherwise remains unseen.
As new social media campaigns like #GetYourBellyOut, #IBDSelfie, and #CelebrateYourGuts continue to emerge at the forefront of IBD advocacy calling for IBD patients to post images online of their ostomies for awareness and empowerment, addressing these new entanglements of identity, technologies, and bodies is particularly important in understanding the rhetoric of wearable technologies. Further, these campaigns explicitly work toward making the invisible (IBD) visible (ostomy) and bring new attention to wearable technologies that are not purchasable, optional, or accessory. With hundreds of tweets, images, and posts over the last six months alone, the IBD community and associated advocacy organizations have seen an exponential increase in online participation and activism, despite systematic marginalization and stigmatization of invisible chronic illnesses such as IBD (Kundrat & Nussbaum, 2005; Japp & Japp, 2005; Braithwaite & Japp, 2005; Graham, 2011). Indeed, this particular chronic disease movement is an ideal site for bringing new insight not only to the dearth of scholarship that has recognized the complex difficulties of living with an invisible disease (Graham, 2011; Defenbaugh, 2011) but also, to the emerging scholarship attempting to define and understand the role, agency, and influence of wearable technologies.
To that end, drawing upon a Toffolettian approach to cyborg bodies and identities and the techno-human relationship (2007), this paper will provide the results of a mix-methodological qualitative study incorporating ethnographic observations of a three-day IBD support group retreat, interviews and online surveys distributed to IBD patients with or considering ostomies, and a social media analysis of the online IBD empowerment campaigns. Specifically, this study examines the ways wearable medical technologies and women with IBD co-articulate to transform or even recreate bodies, identities, self-perception, and body image as these women learn to live with permanent wearable technologies. This paper ultimately works toward understanding how wearable technologies like ostomies 1) make public new bodies and identities for those who wear them, 2) entangle bodies, objects, identities, and the public, and 3) require rhetoricians to reconsider how we define wearable technologies and approach visual and technological discourse within health and medicine.