Welcome to #SpoonieTok: Understanding and supporting disability expertise storytelling abilities and collective information practices on TikTok and beyond

Abstract

This work-in-progress poster explores individual and collective storytelling and information creation practices in chronic illness TikTok communities, with the ultimate goal to support these embodied, creative, and multimodal abilities on and off-app through codesigned storytelling support materials. Findings from ongoing data collection and grounded theory coding, include folks’ sharing of disability expertise: using platform features to visualize invisible disability; audio, visual, and community-specific mimetic options. Interviews with 11 community members illuminate how disabled creators on TikTok engage in algorithmically-mediated online health communities, which have slippery boundaries where information can be found serendipitously through algorithmic ranking, and foster opportunities to develop storytelling skills.