Look Beyond Face Value

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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