Social virtual reality games and apps such as VRChat, AltspaceVR and Rec Room are immersive 3D experiences that let people with disabilities – both visible and invisible – try activities that might not be available to them in the non-virtual world.

In those settings, Cornell researchers have found, the decision to disclose an invisible disability – a physical, mental or neurological condition that is not visible from the outside but can limit or challenge a person’s movements, senses or activities – is personal.

“Many people want to control how their disability representations are shared, depending on context,” said Andrea Stevenson Won, associate professor of communication in the College of Agriculture and Life Sciences.

Won and Shiri Azenkot, associate professor at the Jacobs Technion-Cornell Institute at Cornell Tech and the Technion, and associate professor of information science in the Cornell Ann S. Bowers College of Computing and Information Science, are senior authors of “‘I Try to Represent Myself as I Am’: Self-Presentation Preferences of People with Invisible Disabilities through Embodied Social VR Avatars,” which was presented at the ACM SIGACCESS Conference on Computers and Accessibility (ASSETS ’24), held Oct. 27–30 in St. John’s, Newfoundland.

Ria Gualano, a doctoral student in the field of communication, and Lucy Jiang, M.S. ’24, are co-lead authors. Other contributors were Kexin Zhang, M.S. ’23, a doctoral student at the University of Wisconsin, Madison; and Tanisha Shende, a junior at Oberlin College.

In the U.S., approximately 33 million people – 10% of the population – have an invisible disability, ranging from physical (such as multiple sclerosis or chronic pain) to mental and emotional (such as dyslexia or depression). Many individuals with these types of disabilities do not use assistive technologies, or employ devices that are not readily apparent.

In social VR, an environment where users can choose how their avatars represent them, the decision to announce to the virtual world that they have a disability is up to the individuals.

“Experienced users definitely seem to use social VR differently from novice users,” said Won, whose Virtual Embodiment Lab focuses on, among other things, avatar representation. “But I believe that decisions about disclosure will always be driven by context for many people.”

For this study, the researchers interviewed 15 people with one to three invisible disabilities, representing 22 different disabilities in all. Questions included: “Do you represent or conceal your invisible disability in social VR in any way?” and “How similar is your avatar representation to your physical self?”

The interviewer then asked if participants were interested in representing their invisible disability/disabilities in social VR, and discussed how context might influence that decision.

They then explored the importance of context in virtual and non-virtual disclosure. Questions included: “In the non-virtual world, how do you navigate disability disclosure?” and Would you consider your avatar representation to be the same or different in different settings?”

They found that people with invisible disabilities base their decisions on whether to employ avatar-based disclosure on the context and their experiences. For example, some social VR users wished to use facial expressions and body language, for example, to dynamically represent their energy level or willingness to engage with others. Others preferred not to disclose their disability identity, regardless of context.

Based on the variety of responses, the researchers found that people with invisible disabilities preferred to adopt nuanced and symbolic approaches to disclosure, such as clothing designs (custom disability-related graphics) and accessories (a giant spoon, a symbol of sustenance and support for people with chronic illnesses).

The researchers identify three patterns for social VR disclosure:

Activist: always open to disclosing, in order to spread education and awareness;

Situational Discloser: sometimes open to disclosing, and relied on context cues to make disclosure decisions; and

Non-Discloser: preferred to conceal their disability at all times.

Additionally, some social VR users used public representations of their disability to raise awareness about their disability. Others preferred using private representations of their invisible disability – affirming their identity without necessarily disclosing to other social VR users.

Unlike people with visible disabilities, the researchers wrote, “people with invisible disabilities have the unique experiences of needing to choose to actively represent their disability in both non-virtual and virtual settings.”

This work was partially supported by a gift from Meta Platforms, Inc.