Authors: Ria J. Gualano*, Lucy Jiang*, Kexin Zhang*, Andrea Stevenson Won, and Shiri Azenkot (* indicates co-first authorship and equal contributions).

Through this project, we aim to fill a gap in current accessibility research by focusing on the experiences of people with invisible disabilities (e.g., chronic health conditions, mental health conditions, neurodivergence, etc.) and preferences regarding disability disclosure practices in virtual embodied spaces. We conducted semi-structured interviews with 9 participants, some who identified as neurodiverse and others who identified as having chronic conditions such as rheumatoid arthritis. Of the 9 participants, 4 were Caucasian, 2 were Mixed-Race, 1 was Alaska Native, 1 was Asian, and 1 was Black. We used thematic analysis to conduct open coding and develop our codebook.

At present, there are not many customization features for invisible disabilities in social VR platforms, if any. As the first study on invisible disability representation in social VR, we found that people with invisible disabilities used a unique, indirect approach to inform dynamic disclosure practices. Participants were interested in toggling representation on/off across contexts and shared ideas for representation through avatar design (e.g., disability-related logos and patterns on apparel, floating energy bars that correlate with their energy levels). In addition, they proposed ways to make the customization process more accessible. We see our work as a vital contribution to the growing literature that calls for more inclusive social VR.

Read “Invisible Illness Is No Longer Invisible”
Expanding Inclusive Avatar Design: Understanding Invisible Disability Representation and Disclosure on Social VR Platforms. Ria J. Gualano*, Lucy Jiang*, Kexin Zhang*, Andrea Stevenson Won, and Shiri Azenkot. Self-presentation is critical to a user’s experience in social VR. Prior Works: Visible disability representation via avatars (Zhang et al. 2022, Mack et al. 2023). Research Gap: Preferences of people with invisible disabilities. Research Questions How do people with invisible disabilities currently represent their identities through social VR avatars? How would people with invisible disabilities prefer to represent disability on social VR platforms, if at all? In what social VR contexts do people wish to disclose their disability? Methodology Semi-structured interviews Creative exercise (see photos) 9 participants with invisible disabilities (e.g., rheumatoid arthritis, ADHD, depression) Public representation suggestions: Mobility & health aids Emojis (i.e., brain fog) Brooch Floating badge Drawing of person with a bar above their head. Floating energy bar (represents energy level) Private representation suggestions: Glowing veins (represent nerve issues) Gamertag (represent symptoms discreetly) Drawing of person with earbuds. Earbus represent hiding a disability. Drawing of person with multiple representive elements. Floating med reminder, zebra print representing rare diseases, giant spoon representing spoon theory, cane, hearing aids, disability graphics clothing, medical alert bracelet. Findings Stigma Perceptions Inform Disclosure P4 wanted to represent dyslexia and chronic pain, but not epilepsy: “I’ve had more hatred on epilepsy than the dyslexia.” P8 did not want to represent any disabilities at all, because “they wouldn't be very receptive or kind to that.” Disclosure Varies Between Contexts “Anonymity in VR” (P9) makes disclosure feel easier than non-virtual settings Different contexts had an impact (e.g., more likely to disclose in a disability-specific support group than a large social situation)

Poster of Expanding Inclusive Avatar Design. See on Google Slides