Just after the coronavirus outbreak was deemed a pandemic, I moved out of the apartment I share with my boyfriend and in with my parents. My partner is an essential worker and I have multiple health conditions. So while he went to work, I self-isolated with my family.
I was born with Crouzon syndrome, a craniofacial condition where the bones in the head fused prematurely. Because my face — with crooked, wide-set eyes — is asymmetrical, I grew up understanding what it’s like to want to hide myself. Not out of shame for what I look like, but because dealing with other people’s reactions was exhausting. Years of strangers staring and pointing made me believe I should cover my face to make others more comfortable. I often wore sunglasses and styled my hair in a way that shielded my eyes. As an adult, I’ve come to love my differences because they make me who I am, but I’ve never been able to shake my dream of experiencing what it’s like to look like everyone else. It wasn’t until the coronavirus outbreak and mask orders went into effect that my wish was granted.
Covering my face changed how I was treated in public. During a recent visit to the post office, I stood in line behind strangers, all of whom also wore fabric coverings on their faces, and for once the most noticeable thing about my appearance was not my misshapen eyes but the vibrant colored mask that did all but cover them. I was grateful for the sense of anonymity and the chance to blend in that wearing a mask provided. At almost 30-years-old, it’s nice to run errands without being made fun of, but it’s also forced me to reflect on the body positivity I’ve spent years cultivating.
Having the option to hide my differences and not be on display is a luxury many people don’t realize they have. But beauty and acceptance are not the ultimate compliments. I’ve started to wonder if covering our faces would make it harder for people in the disfigurement community to wear our differences with pride when it comes time to take our masks off.
And I’m not the only one.
For Nathalia Freitas, who runs the Instagram account Loving My Dots, wearing a mask that hides her facial difference is complicated. Freitas, a Brazilian body image advocate living in Los Angeles, was born with Nevus: A birthmark covers 40 percent of the right side of her face.
Though Freitas only ventured out of her apartment for essentials, covering her face with a mask during those times made her uncomfortable. “I feel like I’m lying to myself and others,” she said.
Freitas immigrated to Los Angeles in 2012. Aside from her identity as a person with a visible difference, mask-wearing has also been challenging for her as a nonnative English speaker. “English is my second language and pronunciation is hard for me,” Freitas explained.
Freitas’s story helped me recognize how layered and varied mask-wearing experiences are for people with facial differences, depending on other aspects of identity. As a straight white woman, I know I am privileged that wearing a mask even offers me security. The mask I wear for physical and emotional safety puts black people and people of color at even more of a risk of police bias and brutality. In 2019, black Americans were 2.5 times more likely to be killed by police than white Americans. Black disabled people (which includes those with physical differences) and black trans people are even more likely to be killed by police.
I can be in public with a mask covering my face and feel relief knowing I likely won’t be harassed due to my appearance, but many people with facial differences cannot.
This is true for Atlanta-based writer Rasheera Dopson, who runs the website Beauty with a Twist. Dopson has Goldenhar Syndrome — a condition affecting the development of the ear, eye, and spine — and Vater’s Syndrome which describes congenital abnormalities in several parts of the body. Dopson is also black. She is hard of hearing due to her underdeveloped right ear and like me, her face is asymmetrical. Not only does wearing a mask create a sound barrier, but since traditional masks don’t stay on her face, Dopson had one custom made. “A part of me likes the concealedness of it all,” Dopson said, “because people make contact with my eyes first before the rest of my face which is refreshing. But then as a person who is also hard of hearing, it makes it hard to receive sound. I can’t read lips,” she explained.
As a black disabled woman with a facial difference, Dopson’s mask conceals her physical disability and her facial difference, but it doesn’t eliminate race-based discrimination.
Dopson told me about a recent public encounter she had where an employee looked at her with disgust when she entered a store. “Now, most times when that happens I always know it’s attributed to my facial difference. But this time I had on a mask and her stares were extremely blatant,” Dopson explained. “I knew at that moment her indifference toward me was about my skin tone and not my difference.” The employee’s reaction intensified when she saw Dopson’s facial difference. “I can’t wear a mask to hide my skin tone,” Dopson said. “And the second I pulled off my mask to make my speech more clear and she realized that I also had a facial difference, the level of discomfort she displayed on her face in seeing my blackness and disability was too much for her. I quickly removed myself from the store and situation.”
It’s because of experiences like this that Dopson understands the appeal of wearing a mask for people with facial differences. “It’s a comfort thing,” she said.
Wearing a mask is of course important to help stop the spread of covid-19, but if and when they are no longer necessary, I hope the facial difference community finds power in refusing to cover our faces once again.
As Dopson put it, “we have nothing to hide or be ashamed of.”