The Centers for Disease Control and Prevention now recommends that Americans wear a mask when they venture outside to protect ourselves and others from contracting COVID-19. In some states, masks are required to be worn, or residents will be fined anywhere from $300 - $1,000. This new, sweeping requirement affects our community in unique ways. CCA set out to explore how masks change the perceptions of those with facial differences and how living in the masked masses impacts people with complex medical histories.
|Author wearing a cloth, tie-back mask|
First, many of us feel like CCA adult, Erin Richmond, does as she summed up recurrent themes in a recent Facebook post, “The anxiety [of seeing all these masks] comes from all the memories of being in the hospital. Reminds me of surgeries. I used to hate my mom and dad having to wear a mask when they would go back to the operating room with me. I can almost smell that awful hospital smell when I think about it.” Medical post traumatic stress disorder forces us to relive negative medical experiences from our childhood. Some of us are so triggered by this post-traumatic stress that we become physically ill while others may have an anxiety attack, become agitated, angry, or begin to cry. All of these emotions are ways our bodies process suppressed and/or unsuppressed memories of the lived experiences in hospital and medical settings.
Additionally, not only does the appearance of others wearing a mask cause emotional strife, but it also can interfere with meaningful connection and communication.
|Photo Credit: Martha Stewart.com|
Three weeks ago, while standing in line at the deli counter, I experienced a struggle to communicate my order with my mouth and nose covered by a mask. Previously I wrote, “the fabric blocked my lips, suppressed the sound coming from my throat and mouth. I prayed, as my heart raced, that he understood my order.”
Pronunciation, the physical dynamics of speaking, is obscured by the mask, as is the ability to breathe, for many with facial differences. Many of us are mouth breathers, due to complications at birth with the use of our nasal cavities. Additionally, many children and adults with facial differences are also hard of hearing or deaf, forcing them to read lips in order to understand what is being communicated. This is completely impossible while wearing an opaque mask, or piece of fabric over the mouth.
|Photo Credit: KKCO TV, Kentucky|
In Belgium, Reuters reports that the deaf community is speaking out, demanding that face coverings be made of transparent plastic. According to the article, not only is this helpful for individuals who are deaf, but also for those on the autism spectrum.
Adding to some of the frustrations of wearing a mask, many masks are not designed to fit unique faces and can cause negative sensory reactions. Of course, our community is creative, developing ways to make face coverings fit their heads. In addition, designs have improved drastically over the past few weeks. During this period of mask-wearing trial and error, one CCA Adult, Chelsea Buyalos, shared an encounter she had in a grocery store. A medical professional tapped her on the shoulder to inform her she was wearing her N95 mask incorrectly. At that point, she removed her mask to show him that her physical anatomy did not allow her to wear the mask as others do, since she has no ear on one side. She said the interaction was a bit awkward, but ended in a mutual respect and understanding - a medical professional trying to educate someone and then receiving an education of his own, when confronted with the fact that many people are having to make adjustments to fit their bodies.
Photo Credit: FDA.gov
It’s not all bad news, of course. On the brighter side, several people with facial differences see masks as a great benefit -- an equalizer. For once, our differences may be covered by the mask, allowing us to enter professional environments or the supermarket free of stigma and stares. This was the case for Cassie Hunt, who shared this experience after wearing a mask during her work day as a public health professional. She says, “A mask covers most of my defect. I’ve noticed an increase in professional opportunities.” Clearly, Cassie recognized that she received improved treatment when colleagues and administrators could not see her differences. After having that experience she says she felt “validated” that her previous professional interactions without a mask did affect her ability to earn money, and access the ability to rise in her field. Cassie says, “It’s real, that I really am treated differently when I’m not masked. It makes me feel like I’m not crazy.” During the COVID-19 era, she is “thankful for the economic and professional benefits, but sad that this [stigma due to her facial difference] is still a thing. We are still here as a society.”
One adult, who preferred to remain anonymous, said she was
shopping in the grocery store with her partner, when a friend from her partner’s work approached them. Everyone was wearing masks, and introductions were made. The coworker made a comment to her partner, “Wow, buddy, how did you get such a looker? I can tell she’s beautiful even with the mask!” While this comment was a playful jest between coworkers, it felt extra inappropriate as her facial difference was not visible, and she wonders if the man would have made such an odd comment had they not all been wearing masks.
|Photo Credit: The Local, Newspaper, Germany|
We still have a long way to go in acceptance of those with facial differences. Our hope is that through CCA’s participation in International Face Equality Day on May 19th, continued advocacy through our empathy-building and anti-bullying educational curriculum, and sharing of our personal stories, we can change the perception of people with facial differences throughout our society.