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“Room to Tell” [RtoT] is a social design experiment in a children’s hospital that involves multiple stakeholders in designing affectively engaging civic opportunities with new media for patients hospitalized with cystic fibrosis [CF]. Because teens with CF are quarantined from each other, RtoT creates socio-emotional connections through video storytelling. Patients use iPads to produce and edit digital videos, which tell stories about moments in their life that exemplify their personal, embodied experiences with CF. This pedagogic focus emerged from a year of ethnographic study in which multiple CF patients expressed their desires both to learn digital video production and to share knowledge around teen life with CF that adult-driven websites avoid or simply eschew. Thus, this case questions how researchers and teachers might continue to design opportunities that support personally and emotionally resonant civic learning experiences with new media for adolescents in the hospital and beyond.
Interested in civic media learning as a social, affective experience, RtoT pushes the boundaries of social design experiments in which educational programs are considered “open systems that are subject to revision, disruptions, and contradictions and are co-designed”(Gutiérrez and Vossoughi 2009, 102). With the goal of expanding social design methods to attend more closely to affect, program implementation focused on intersections between researchers’ emerging feelings and participants’ desires to tell stories about their experiences. For example, researchers reflected on their able-bodied nervousness about adolescents’ desires to share feelings about mortality, felt those stories’ potential to inspire self-care, and followed the stories to their publication on YouTube, choosing not to allow their tentativeness to dampen patients’ desires to tell. Thus, moments of affective intensities were focal points in analysis and program development (Hollett and Christian Ehret 2014): research and pedagogy worked side by side to develop and understand adolescent’s desires for civic media production.
At sixteen, Austin has undergone routine hospitalizations for most of his life. A genetic disease, CF affects Austin’s respiratory system and his ability to absorb nutrients from food. As a result, he undergoes respiratory treatment in the hospital for two-week periods at least twice a year. Early in the project, Austin expressed the desire to develop a “better” website for learning about CF while he showed researchers popular websites he considered “uninformative.” These sites were adult-driven with little more than the information about which he was already expert, having been treated by adults for his CF all of his life. Moreover, the sites, developed by adults for an adolescent audience, sounded like adult entreaties aimed at kids telling them to “take care of themselves.”
Alternatively, Austin showed researchers YouTube videos teens had uploaded in which they described what it was like to live with CF (Figure 1). Not having much, or any, physical contact with other teens living with the same condition, Austin found this teen-perspective especially impactful. One YouTuber, hollyrosanna, moved him especially. He compared how her skin color, which evinced a bluishness connected to oxygen depletion, revealed the progression of her CF in a way that he thought adult-driven websites elided. On those sites, he said, teens living with CF were not visibly ill. Austin continued playing videos in which hollyrosanna described in detail how she managed CF, her social life, and her first year at university. He ruminated on her appearance, connected to his own, and pondered what it might be like to go to college and manage life on his own.
A few days after exploring these videos together, the RtoT team collaborated with him to make a YouTube video. They started a private YouTube channel on which they imagined other patients could share experiences important to them, or, as Austin put it, experiences that “only other CFers would understand” (Figure 2). In Austin’s first video he focused on how to develop trust in friendships, when to tell friends about CF, and how to manage just ‘hanging out’ with other kids, e.g., when peers’ smoking puts his fragile respiratory system at risk.
> > Austin felt that these were the most important social issues to discuss with other teens living with CF because they are not otherwise addressed on adult-driven sites, yet they are most salient in his everyday life as a high school teen.
The RtoT team initially felt that guiding him in telling these stories was emotionally risky. Austin wanted to disclose intense personal experiences on YouTube — for example, of a classmate standing up to inform his class that he had a terminal illness. As a teacher-researchers, the RtoT team fought fears that — had we succumb to them — might have dampened Austin’s affective storytelling, and generated again the sort of adult-driven website his desires moved against.
As teachers and researchers continue to explore what adolescents can gain from engagement with civic media, they might also consider what more might be learned from feeling out teens’ affect driven purposes for civic engagement with new media. More than psychologically empowering (Leung 2009, 1327–1347), Austin’s new media production intensified his affective drive for social connection and self-care. How are researchers and teachers attuning both to adolescents’ feelings and to their own in the service of following teens’ desires for affective connection through civic media? The RtoT project continues to produce affective desires between participants, and is building an online carescape of affection in which patients’ desires for knowledge of their illnesses as experienced by other bodies propels their engagement with civic media. Where else might feeling out adolescent’s embodied desires for affective civic media engagement take research and practice?
Gutiérrez, Kris D., and Shirin Vossoughi. 2009. “Lifting off the ground to return anew: Mediated praxis, transformative learning, and social design experiments.” Journal of Teacher Education.
Hollett, Ty, and Christian Ehret. 2014. “‘Bean’s World’:(Mine)Crafting affective atmospheres of gameplay, learning, and care in a children’s hospital.” New Media & Society.
Leung, Louis. 2009. “User-generated content on the internet: an examination of gratifications, civic engagement and psychological empowerment.” New Media & Society 11(8): 1327–1347.
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