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"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

TL;DR

This paper addresses how people with invisible disabilities represent and disclose their identities in embodied social VR. Through semi-structured interviews with 15 invisibly disabled participants, the study reveals a binary framework of public versus private disability expression and identifies three disclosure patterns: Activists, Non-Disclosers, and Situational Disclosers. The findings show that embodied avatars enable richer, multimodal signaling (facial expressions, body language, movements) than non-embodied representations, and that participants prefer toggling disability cues on or off depending on context. The work offers design recommendations for inclusive embodied avatars, including multimodal customization, presets, and dynamic disclosure controls, aiming to improve accessibility, safety, and representation in social VR.

Abstract

With the increasing adoption of social virtual reality (VR), it is critical to design inclusive avatars. While researchers have investigated how and why blind and d/Deaf people wish to disclose their disabilities in VR, little is known about the preferences of many others with invisible disabilities (e.g., ADHD, dyslexia, chronic conditions). We filled this gap by interviewing 15 participants, each with one to three invisible disabilities, who represented 22 different invisible disabilities in total. We found that invisibly disabled people approached avatar-based disclosure through contextualized considerations informed by their prior experiences. For example, some wished to use VR's embodied affordances, such as facial expressions and body language, to dynamically represent their energy level or willingness to engage with others, while others preferred not to disclose their disability identity in any context. We define a binary framework for embodied invisible disability expression (public and private) and discuss three disclosure patterns (Activists, Non-Disclosers, and Situational Disclosers) to inform the design of future inclusive VR experiences.

"I Try to Represent Myself as I Am": Self-Presentation Preferences of People with Invisible Disabilities through Embodied Social VR Avatars

TL;DR

This paper addresses how people with invisible disabilities represent and disclose their identities in embodied social VR. Through semi-structured interviews with 15 invisibly disabled participants, the study reveals a binary framework of public versus private disability expression and identifies three disclosure patterns: Activists, Non-Disclosers, and Situational Disclosers. The findings show that embodied avatars enable richer, multimodal signaling (facial expressions, body language, movements) than non-embodied representations, and that participants prefer toggling disability cues on or off depending on context. The work offers design recommendations for inclusive embodied avatars, including multimodal customization, presets, and dynamic disclosure controls, aiming to improve accessibility, safety, and representation in social VR.

Abstract

With the increasing adoption of social virtual reality (VR), it is critical to design inclusive avatars. While researchers have investigated how and why blind and d/Deaf people wish to disclose their disabilities in VR, little is known about the preferences of many others with invisible disabilities (e.g., ADHD, dyslexia, chronic conditions). We filled this gap by interviewing 15 participants, each with one to three invisible disabilities, who represented 22 different invisible disabilities in total. We found that invisibly disabled people approached avatar-based disclosure through contextualized considerations informed by their prior experiences. For example, some wished to use VR's embodied affordances, such as facial expressions and body language, to dynamically represent their energy level or willingness to engage with others, while others preferred not to disclose their disability identity in any context. We define a binary framework for embodied invisible disability expression (public and private) and discuss three disclosure patterns (Activists, Non-Disclosers, and Situational Disclosers) to inform the design of future inclusive VR experiences.
Paper Structure (29 sections, 2 figures, 1 table)

This paper contains 29 sections, 2 figures, 1 table.

Table of Contents

  1. Introduction
  2. Related Work
  3. Disability Disclosure in Employment, Academic, and Social Settings
  4. Social Virtual Reality
  5. Traditional and Creative Avatar Expression
  6. Methodology
  7. Participants
  8. Procedure
  9. Analysis
  10. Positionality
  11. Findings
  12. VR as a Social Environment
  13. Embodied Avatars are Dynamic, Contextual, and Multimodal
  14. Differences Between Embodied and Non-Embodied Avatars
  15. Multimodal Affordances Supported Disability Representation
  16. ...and 14 more sections

Figures (2)

  • Figure 1: Participant 1’s drawings and suggestions for invisible disability representation during the whiteboard component of the study, featuring a giant spoon to represent spoon theory and other assistive technologies to disclose their disability.
  • Figure 2: Participant 11’s images, sticky notes, and suggestions for invisible disability representation during the whiteboard component of the study, featuring an information icon and the ADHD rainbow butterfly symbol above the avatar.