"I Try to Represent Myself as I Am": Self-Presentation Preferences of People with Invisible Disabilities through Embodied Social VR Avatars
Ria J. Gualano, Lucy Jiang, Kexin Zhang, Tanisha Shende, Andrea Stevenson Won, Shiri Azenkot · 2024 · ASSETS '24: Proceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility · doi:10.1145/3663548.3675620
Summary
This paper investigates how people with invisible disabilities want to represent their disability identity through avatars in social virtual reality environments. While prior research has explored avatar-based disability disclosure for blind and d/Deaf users, invisible disabilities — which include conditions like ADHD, dyslexia, chronic pain, depression, anxiety, fibromyalgia, and many others — have been largely overlooked. The researchers interviewed 15 participants who collectively represented 22 different invisible disabilities, exploring their preferences for if, how, and when they would want to disclose their disabilities through VR avatars. The study used a semi-structured interview approach supplemented by a design activity where participants described or sketched their ideal avatar representations. A key contribution is the distinction between public and private disclosure expressions. Public expressions are visible to all other VR users (e.g., a visual aura indicating chronic pain, a symbol on clothing) and function similarly to wearing a badge or T-shirt in the real world. Private expressions are visible only to the individual user or selected trusted contacts (e.g., an energy meter only the user can see, a private status indicator shared with close friends) and serve self-monitoring or selective disclosure purposes. This binary framework acknowledges that disclosure is not all-or-nothing — people may want to express their disability identity to themselves or a trusted few without broadcasting it to everyone in a virtual space.
Key findings
The study identified three distinct disclosure patterns among participants. Activists (4 of 15) were open about their disabilities and wanted public avatar representations as a form of advocacy and community building — they saw VR as an opportunity to normalise invisible disabilities and find others with shared experiences. Non-Disclosers (3 of 15) preferred not to represent their disability in VR at all, viewing their disability as private or fearing stigma and unwanted questions. Situational Disclosers (8 of 15) — the majority — wanted context-dependent control, disclosing in some situations (support groups, trusted friend circles) but not others (professional meetings, interactions with strangers). These patterns were shaped by participants' real-world disclosure experiences: those who had faced negative reactions to disclosure offline were more cautious in VR. Participants proposed creative embodied representations leveraging VR's unique affordances: dynamic energy-level indicators (auras that dim as fatigue increases), facial expressions that automatically reflect pain levels, body language cues showing willingness to engage, and symbolic accessories that would be recognisable to others with the same condition but not to the general public (a form of "insider" signalling). Several participants emphasised that dynamic, state-based representations were more meaningful than static symbols — their disabilities fluctuate, and avatars should reflect that variability. The desire for granular privacy controls was universal: participants wanted to choose exactly who could see what level of disability information, with different settings for different social contexts.
Relevance
This research complements the Angerbauer et al. study on inclusive avatars (also at ASSETS '24) by focusing specifically on the disclosure preferences and self-presentation strategies of people with invisible disabilities — a larger but less studied population. The public/private framework and three disclosure patterns provide concrete design guidance for social VR platforms: avatar customisation systems should support not just what disability representation looks like, but who can see it and in what contexts. The dynamic, state-based representation preferences challenge static avatar design and suggest that future VR platforms should support real-time expressive avatars that can communicate fluctuating conditions like energy levels, pain, or cognitive fog. For accessibility practitioners, the finding that most participants are situational disclosers reinforces the principle that disability representation must be user-controlled, context-sensitive, and granular — not a binary switch. The "insider signalling" concept — representations meaningful to the disability community but not obviously marked to others — is a novel design direction that respects both pride and privacy. The breadth of invisible disabilities represented (22 conditions) also highlights how diverse this population is, cautioning against one-size-fits-all avatar solutions.
Tags: invisible disability · virtual reality · avatars · self-presentation · disability disclosure · identity · social VR · ADHD · chronic conditions · neurodiversity