Welcome To #Spoonietok: Understanding and Supporting Disability Expertise, Storytelling Abilities, and Collective Information Practices on Tiktok and Beyond

ABSTRACT This poster reports developing dissertation research, exploring the individual and collective storytelling practices of people experiencing difficult to diagnose chronic pain and fatigue (CSSs) on TikTok to understand and ultimately support these embodied, creative, and collective storytelling abilities on and off‐app. Ongoing data collection and analysis using constant comparison, guided by critical disability studies sensitizing concepts, of 150 videos and their top‐20 comments, and interviews with 6 community members indicate that people with CSSs are using TikTok affordances to tell and scaffold complex micro‐stories sharing disabled expertise ; creatively visualize invisible illness; use intimate, documentary cinematography; tell composite stories using skits and collapsed time; and make audio, visual, and community/collective mimetic alterations. This poster shares a pragmatic sampling approach using algorithm training, and results from visualization activities during interviews which indicate a messy overlapping landscape of what I call algorithmically mediated online health communit(ies) (AMOHCs), which have slippery boundaries, where health information is found serendipitously, and people connect across specific chronic illness categories. This dissertation‐in‐progress is developing a set of disability‐specific storytelling abilities, which interview participants indicate are transferable to off‐app settings; and upcoming codesign workshops creating storytelling support materials with community members will further distill disability storytelling support needs.