Masks in the time of COVID-19 as an inadvertent simulation of facial paralysis

Abstract

New face mask requirements to slow the spread of COVID-19 have complex ramifications on stigma for people who have facial paralysis or facial difference. The author, a psychology researcher who has facial paralysis, links her research and insight into adapting to and destigmatizing facial paralysis to the COVID-19 pandemic. Masks render this visible disability nearly invisible, potentially undermining adaptation and identity. While people without facial paralysis are suddenly experiencing restricted facial expressions, people with facial paralysis are skilled in alternative expression (i.e. communicating with gesture, posture, and prosody). Disability simulations such as this increase non-disabled people’s frustration and pity by simulating the immediate acquisition of a disability unless they showcase the adaptations disabled people develop over time. There is an opportunity to destigmatize people with facial paralysis and other disabilities by learning from their adaptations.

Keywords:

• Facial paralysis
• disability simulation
• COVID-19
• face masks
• stigma

People with facial paralysis, like myself, are described in medical journals as having ‘mask-like’ faces (Kumar 1990). Due to the global COVID-19 pandemic, most people across the globe are required or requested to wear face masks in public and thus are experiencing a simulation of facial paralysis for the first time. This also means that people with facial paralysis are being asked to cover their faces with masks, rendering their visible difference mostly invisible.

As a whole, facial paralysis is not uncommon, occurring in approximately 50 per 100,000 per year (Bleicher et al. 1996). It can be congenital like the disorder I have, Moebius syndrome. More commonly, it is acquired at some point later in life from an illness or an injury. Bell’s palsy, acoustic neuroma, Lyme disease, stroke, multiple sclerosis, ear infections, and other conditions can all lead to chronic facial paralysis.

Being in public is the domain in which people with facial paralysis are most likely to be stigmatized, and this is exactly the setting in which we are being asked to wear masks. Facial paralysis is a highly visible but unrecognizable disability. Strangers notice something different about a person with facial paralysis, but do not understand the nature of the difference. They stare, often out of curiosity, sometimes out of malice. Strangers may mistake people with facial paralysis as unfriendly, unhappy, or intellectually disabled (Bogart, Tickle-Degnen, and Ambady 2014). Being in public with facial paralysis can involve a lot of energy and impression management. For some people with facial paralysis, masks have been a welcome opportunity to cover their distinctiveness and ‘pass’ as normal. A mask offers the civil inattention someone with a facial difference is usually not afforded. People with facial paralysis and other disabilities are already at greater risk of isolation due to stigma and discrimination (Simmons 2020), which may be amplified during COVID-19. While important for public health, stay-at-home orders and masks may inadvertently undermine resilience by reinforcing social avoidance.

I spent the first half of my life deep in internalized ableism. Back then, I would have loved the excuse to hide my difference with a mask. My experiences with a unique appearance and manner of communication eventually led me to a career as a psychology professor researching facial paralysis and disability. I have developed a strong sense of disability identity and pride in my distinctiveness. It feels as if I am betraying my identity by covering my unique face with a mask, but I do, especially since disabled people are disproportionately impacted by COVID-19.

Some of my first research examined the expressiveness of people who were born with facial paralysis and those who acquired it later (Bogart, Tickle-Degnen, and Ambady 2012). Regardless of the severity of the paralysis, people with congenital facial paralysis had adapted better than those who acquired it. This suggests that being born with a disability confers an adaptation advantage over acquiring it later, perhaps because it occurs during initial identity development and a period of great cognitive flexibility (Bogart, 2020). People with congenital facial paralysis use more ‘alternative expression’. That is, they expertly rally the other communication channels available to them (i.e. gesture, posture, and prosody). For example, one women with Moebius syndrome I interviewed wore a happy-face pin as a signal of friendliness (Bogart, Tickle-Degnen, and Joffe 2012).

People without facial paralysis are suddenly experiencing what it is like to have limited facial expression. Media accounts bemoan the inability to share a smile with a cashier, to flash an apologetic grin while passing someone. These realizations seem trite to those of us who have been living with facial paralysis and trying to educate the public about it for years. People with longstanding facial paralysis are at an advantage when communicating while wearing a mask. Inspired by the woman with Moebius syndrome who wore a happy-face pin, I seek out colorful, cheerful masks. I am skilled in smiling with my voice and express myself verbally to clarify ambiguous non-verbal behavior.

Wearing a mask is an inadvertent simulation of facial paralysis. Disability simulations are used as well-meaning but often counterproductive attempts to increase non-disabled peoples’ understanding of disability by aping the disability experience in some way (e.g. wearing a blindfold and trying to navigate a room to simulate blindness). These activities simulate the immediate acquisition of a disability, a frustrating period when one has not yet learned adaptations. A 20-minute simulation will not demonstrate the skills or mastery that a disabled person develops over time. Experiments show that when non-disabled people engage in disability simulations, they feel more sympathy for disabled people yet simultaneously see them as incompetent (Nario-Redmond, Gospodinov, and Cobb 2017). Simulations may be more effective when paired with education about adaptations disabled people engage in, showcasing their competence (Silverman, Gwinn, and Van Boven 2015).

My research shows that educating the public about facial paralysis and attending to alternative expression reduces stigma toward people with facial paralysis (Bogart and Tickle-Degnen 2015). The general public is now experiencing restricted facial expression, but we must be cautious of the dangers of disability simulation. Wearing masks may lead people to feel pity for people with facial paralysis, unless they consider the creative ways people with limited facial expression adapt.

More broadly, people with a variety of disabilities have been surprised to find that adaptations they have engaged in for years, and accommodations they have fought for and were denied – like working from home, telemedicine, and grocery delivery – have now suddenly been adopted by society at large. When the majority of society is disabled by conditions surrounding the pandemic, accommodations seem justifiable to the public. When people with disabilities are in the minority again, the public must not forget the accommodations they have utilized. People with facial paralysis have developed skills to communicate without facial expression, and now people without facial paralysis are being invited to rethink their communication, too. Perhaps this will help the public think about communication in broader terms that reflect the true diversity of human interaction.

Acknowledgements

The author thanks Amanda Hemmesch, Olivia Friedman, and Beau Bogart for their feedback on earlier versions of this Current Issue article.

Disclosure statement

No potential conflict of interest was reported by the author.