Moebius Syndrome, a rare form of facial paralysis, makes social interaction particularly difficult.  Because this condition prevents people from displaying any form of facial expression, those dealing with it are often seen as unhappy or downright unfriendly.

This condition makes it difficult for those with Moebius Syndrome to relate interpersonally, but that does not mean it is impossible. Instead, many people turn to other forms of self-expression, and it is important for us to remember that there are a myriad of ways to express ourselves: through laughter, humor, dress, or hair color.

This is the very reason why Moebius Syndrome Awareness Day was established. This day, January 24, is intended to promote education and understanding of the condition.

Research conducted by Dr. Kathleen Bogart at Oregon State University’s Disability and Social Interaction Lab has shown that by promoting education about this condition, we can help create a more positive impression of those who live with facial paralysis.

Because Moebius Syndrome often occurs alongside autism, making interpersonal connection even harder, this sort of awareness is crucial to promoting inclusion for all sorts of people who struggle to communicate.

If you have Moebius Syndrome, or know anybody that does, consider sending in an image to the Moebius Syndrome Foundation’s Facebook page. Using this template, the Foundation seeks to display images of people with Moebius Syndrome alongside descriptions of how they express themselves in lieu of facial expression.

Many of those featured turn to forms of art, such as music, photography, or writing, in an effort to better communicate who they are. Anybody who is passionate about these art forms understands that art can channel a lot of emotion and individualism. Similarly, many compensate in interpersonal interactions by cultivating an expressive laugh or a particularly warm handshake.

Even if you do not experience Moebius Syndrome, there is plenty that you can do on behalf of those who do.

A good place to start is by sharing support for Moebius Syndrome Awareness by posting flyers on public billboards or through social media, using the hashtag #moebiusawareness. Similarly, the official color of Moebius Syndrome Awareness day is purple, so you might also consider wearing purple on January 24, in solidarity with the event.

These forms of support, while they promote education and awareness, also have a special purpose for those who deal with Moebius Syndrome themselves. Because the condition is poorly understood and potentially isolating, demonstrating solidarity shows those who deal with Moebius Syndrome that they are not alone.

For more information on Moebius Syndrome, see our past blogs here and here.

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By Dr. Kathleen Bogart, Assistant Professor of Psychology, Oregon State University

Facial expressions are important parts of how we communicate and how we develop impressions of the people around us. In “The Expression of Emotion in Man and Animals,” Charles Darwin proposed that facial expressions evolved to quickly communicate emotional states important to social survival. He hypothesized that certain facial expressions are innate, and therefore universally expressed and recognized across all cultures.

In 1971, psychology researchers Paul Ekman and Wallace Friesen tested Darwin’s hypothesis. They enlisted members of the Fore tribe in Papua New Guinea, who at the time had little contact with Western culture, to do an emotion recognition task. An interpreter read stories about emotional events to members of the tribe, such as “her child has died, and she feels very sad.” The Fore were then asked to match photos of Americans’ facial expressions to the story. The researchers also took photos of the facial expressions of the Fore people and showed them to Americans later.

People from both cultures showed the same facial expressions for six “basic” emotions (anger, disgust, fear, happiness, sadness and surprise) and were able to recognize their meaning in others. This is strong evidence that certain emotions are evolutionarily based. In the decades since, research has continued to support Darwin’s hypothesis: for instance, showing that congenitally blind people display the same spontaneous expressions as sighted people. Indeed, facial expression may be one of the only universal languages.

So where does that leave people with facial paralysis? As a psychology professor with Moebius syndrome, a condition involving facial paralysis, I’m personally and professionally interested in what happens when the face is no longer the primary means of expression. My Disability and Social Interaction Lab at Oregon State University has been investigating this question.

Kathleen Bogart’s Disability and Social Interaction Lab presenting research about Moebius Syndrome Awareness Day. Author provided

Types of facial paralysis

Each year, approximately 225,000 Americans are diagnosed with facial paralysis. It can be congenital, like Moebius syndrome or hereditary facial paralysis. It can also result from birth trauma if the facial nerve is damaged in the birth canal or by forceps delivery.

Acquired facial paralysis from an illness or an injury is far more common. Bell’s palsy, acoustic neuroma, Lyme disease, stroke, multiple sclerosis, ear infections, injury to the facial nerve and others can all lead to facial paralysis. Bell’s palsy, which typically affects one side of the face, is the most common. While it’s usually temporary, approximately 15 percent of people with Bell’s are left with paralysis that does not improve.

In a series of published and unpublished focus groups and interviews, my colleagues and I found that people with facial paralysis reported hearing all sorts of “interpretations” of their appearance. Strangers asked them if they had just gotten a Novocain shot, if they were having a stroke, or if the condition was contagious, deadly or painful. Some people made connections to the person’s character, assuming them to be unfriendly, unhappy or even intellectually disabled.

Making a first impression

In landmark research published in 1993, psychologists Nalini Ambady and Robert Rosenthal asked strangers to view short (six- to 30-second) silent video clips of high school and college teachers while they were teaching. The strangers then rated their impressions of the teachers’ personalities, based on their nonverbal behaviors – things like expressions and gestures. Today this sort of research using very short experiences to form judgments of individual behavior is called thin slice research.

The strangers’ ratings were remarkably similar to teaching effectiveness ratings from the teachers’ students and their supervisors who knew them and their work very well.

Our social world has an overwhelming amount of information, but numerous thin slice studies suggest we can navigate it efficiently based on a “gut” reaction. People’s first impressions are surprisingly accurate in predicting many social characteristics: personality, depression, even gayness.

While facial expressions aren’t the only thing that go into a first impression, they are a pretty big element. So basing our impressions of others on their facial expressions is usually an effective strategy. However, the accuracy of impressions breaks down when people encounter someone with facial paralysis. At first glance, a person with a paralyzed face may look unfriendly, bored, unintelligent, or even depressed. And indeed, people with facial paralysis are often mistakenly ascribed these characteristics.

People with facial paralysis compensate

My own research has found that many people with facial paralysis increase expression in their bodies and voices, something I call “compensatory expression.”

In a 2012 study my colleagues and I video-recorded interviews with 27 people with different types of facial paralysis. Research assistants (who were unaware of our hypotheses) watched the interviews and rated the vocal and bodily expressivity of the people with facial paralysis.

Interestingly, we found that people with congenital facial paralysis, like Moebius syndrome, used significantly more compensatory expression than people with acquired facial paralysis. For instance, they used more emotion words, vocal inflection, laughter, gestures and head and body movements. They were also louder and more talkative.

It’s possible that people with congenital facial paralysis are better adapted, perhaps because they navigated early developmental milestones with facial paralysis.

People who acquired facial paralysis after birth, but have lived with it for a long time, may also adapt well. However, our early data suggest that there may be a unique adaptation advantage for people with congenital conditions.

Facial expressions aren’t the only way people communicate. Women shaking hands via www.shutterstock.com.

Thin slice research on facial paralysis

Facial expressions play such a critical role in forming first impressions, so what does that mean for people with facial paralysis?

In a series of experiments, we showed thin slice videos of people with disorders that affect facial movement, including facial paralysis and Parkinson’s disease to strangers. We asked the strangers for their first impressions based on the videos.

People with severe facial movement impairment were rated as less happy and sociable compared to people with mild facial movement impairment. Participants also had less desire to form friendships with them.

Our results across these studies have found that there is a very large bias against people with facial movement disorders.

Crucially, participants rated people with facial paralysis who use a lot of compensatory expression as happier and more sociable than those who use less, regardless of the severity of their paralysis. We are developing communication skills workshops encouraging the use of compensatory expression for people with facial paralysis.

In another thin slice study, Linda Tickle-Degnen along with Kathleen Lyons found that even clinicians with expertise in facial movement disorders viewed people with facial movement impairment in negative ways.

This indicates how hard it is to override the natural human tendency to form impressions based on the face. And for clinicians, it is of special concern. Their facial expression bias may be a barrier to rapport or even clinical judgments of depression and pain in patients with facial paralysis.

Raising awareness can help

In a recent experiment, we found initial evidence that raising awareness improves how people perceive facial paralysis. Some participants read a few educational paragraphs about facial paralysis (much like the information in this article), and some were not given any information about facial paralysis. Next, all participants watched thin slice videos of people with facial paralysis. The participants who read the educational information rated people with facial paralysis as more sociable than those who did not read the information.

We are continuing to develop educational materials for clinicians and the general public to raise awareness and reduce bias.

In our focus groups, the most common comment from people with facial paralysis was a call for greater public awareness. They know firsthand that people are confused by their facial difference. They often wonder if they should explain it to others, but to do so every time they meet someone new would be awkward and burdensome. Widespread awareness would reduce the need to explain their condition, and would educate others to pay attention to the compensatory tactics they use to communicate their emotions.

As we enter the New Year, it is time to prepare for Moebius Syndrome Awareness Day on January 24. While often ignored, a better understanding of this rare condition can lead to a better understanding of facial expressions – and the people who cannot show them.

Moebius syndrome is characterized by a craniofacial/neurological disorder that results in facial paralysis, stifling the ability to exhibit basic emotional expressions like frowning or smiling. While Moebius syndrome is quite rare, affecting approximately 1 in 50,000 to 1 in 500,000, it profoundly affects the lives of those who live with it.

By being unable to show emotion through facial expression, Moebius syndrome poses distinctive challenges for social interaction. Dr. Kathleen Bogart, a psychologist who is afflicted by the condition but also studies it, has elaborated on this challenge.

Dr. Bogart explains how hard it is to reciprocate emotions without the benefit of facial expressions, saying “I wasn’t able to return [expressions]. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Despite these challenges, Moebius syndrome does not prevent people from living happy and successful social lives.

Humintell’s Dr. David Matsumoto and Dr. Bogart have worked together to better understand how people without facial expressions cope. In a 2010 study, they found that Moebius syndrome does not prevent the recognition of emotions in other people’s faces.

This is notable, given the role of “facial mimicry” in developing emotion recognition skills. Most people learn to recognize emotional expressions by mirroring the expressions seen in others. This allows us to feel their emotions ourselves, helping us connect the visual presentation of an emotion with how we feel it ourselves. Because those with Moebius syndrome cannot do this, they must have found another way to recognize emotions.

Dr. Matsumoto explains that people can develop compensation skills, just as they would for other senses: “Just like for blind people, whose senses of touch, smell, hearing become sharper… Same thing here, I think, only it’s in the domain of nonverbal communication.”

This compensation takes several different forms. Matthew Joffe, a therapist with Moebius syndrome emphasized developing an expressive laugh and sense of humor. “I use humor a lot,” he explains, “It’s a way of showing my humanity, for one thing, and over the years people have said I have a great laugh… I have many different laughs for different occasions, each one looks distinct in my body”

Similarly, Dr. Bogart has learned to be an effective reader of people. “At a party, I feel like I can tell whether someone will be worth talking to within seconds… I can read people’s comfort level, or whether they can work through discomfort, very quickly.”

These tactics seem successful too! In another study by Dr. Bogart and Dr. Matsumoto, they found that participants with Moebius syndrome were no more likely to experience anxiety, depression, or general dissatisfaction with life.

For more information of Moebius syndrome, read Humintell’s past blogs here and here.