Moebius syndrome is a rare condition that causes an inability to move the eyes laterally and facial paralysis. A similar type of paralysis can also occur as a result of multiple sclerosis (MS), ear infections, stroke, Lyme disease, acoustic neuroma, Bell’s palsy, other illness, or even an injury.
Research journals have described this kind of paralysis as “mask-like.”
Kathleen Bogart is a psychology professor who has focused her life’s work on researching facial paralysis, psychosocial implications of disability, rare disease, and Moebius syndrome. She works at Oregon State University.
She herself is diagnosed with Moebius syndrome, and knows firsthand what it is like to live life looking differently from those around you. She first tried ignoring her obvious differences, but when she was bullied for it in school it was difficult to forget. She was told she didn’t need a Halloween costume because her face was scary enough.
She explains how back then, she would have loved if everyone was required to wear a mask so she could cover up. In this pandemic, Kathleen explains how she finally “blends in.”
But now, things are different for her. She does not have the same perceptions that she had when she was a child. Now she likes her distinctiveness. She sees her face as a part of her identity and she’s grown in her confidence.
A New World
Now the world is adjusting to a reality that Kathleen has always lived. Wearing masks because of COVID-19 means that we must rely on other forms of communication besides facial expressions. Kathleen has never been able to express herself using her facial muscles. First impressions were hard, as people would often make assumptions about her. They would think she was unhappy, unfriendly, or disabled. She was used to the stares.
One of her first research projects examined the differences in adjustment for those who were born with facial paralysis compared to those who acquired it. She found that those who were born with the condition found adapting to the paralysis easier. She suspects that this is because those born with the condition experience it during the period of a child’s initial development and their understanding of their identity.
Currently, everyone is adapting. Kathleen has called it the learning of “alternative expression.” The world is learning how to communicate using their tone of voice, laughter, and body language. It is a challenge to ensure your words come off as you intend, when you cannot rely on your facial expressions as normal.
Kathleen explains that COVID has a silver lining. It is an accidental disability simulation for those who are not disabled. People are learning empathy by living a small part of the experience those with facial paralysis experience day to day. Another advantage is that it is teaching people to be more attuned to different methods of emotional expression that don’t involve the face.
You can read more about Kathleen and her take on facial paralysis and COVID here.