Wow! How? Moebius Syndrome

There are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone’s ability to recognize – and use – those expressions helps them navigate in the world.

Historically, people with expressive faces – a big grin, for example – were perceived as happier than those who did not smile so easily and widely. Research showed that people with facial paralysis were not only perceived as depressed, but also were less satisfied with life than other people. Further, researchers hypothesized that people with facial paralysis were less perceptive of emotion, less able to even identify those universal facial expressions because they couldn’t mimic them with their own faces.

It all sounded fishy to Kathleen Bogart, then an undergraduate at Louisiana State University. She reviewed the literature and found that none of the studies differentiated between congenital and acquired facial paralysis. That is, someone born with Moebius syndrome (a rare, congenital facial paralysis) was lumped in with someone with stroke, Parkinson’s disease, or Bell’s Palsy.

The truth emerged when someone with Moebius syndrome – Bogart herself – focused on the very different experiences of someone who has had their whole life to adapt vs. someone who has a sudden, later-in-life change in how they interact socially.

People with Moebius are likely to be just as happy and satisfied with life as everyone else. They are also just as likely as everyone else to be able to identify emotions on someone’s face.

Dr. Bogart (she is now an Associate Professor in the School of Psychological Science at Oregon State University) has knocked down all the assumptions made by social psychologists who had never thought to ask someone with Moebius to contribute their insights. Through the Moebius Syndrome Foundation and a UK organization, Changing Faces, she includes people with congenital facial paralysis in her studies, despite its rarity. Dr. Bogart is also the co-founder of the Disability Advocacy and Research Network (DARN) for psychologists who have and/or specialize in disability and she writes the Disability is Diversity blog for Psychology Today.

January 24 is Moebius Syndrome Awareness Day, marking the birthday of Paul Julius Moebius, who diagnosed the condition in 1888. Here are 7 things to understand about this “visible but unrecognizable disability,” courtesy of Dr. Bogart. My upcoming book, Rebel Health, includes insights from people living with Moebius who find hope in community, as well as the origin story of the Moebius Syndrome Foundation.