“My life was changed when masks were mandated in Virginia, but not in the way you’re probably thinking. Wearing a mask hides my face, which is severely deformed despite having over 50 surgeries in 30 years to change that. I was born with a severe facial anomaly that cannot be hidden except with Halloween masks or ski masks in winter. Not a day in my life, have I gone out in public and not had someone stare at me.
Despite wearing a mask in public, I still have a capped tracheostomy tube sticking out my neck and sound slightly funny when I talk, but no one can see my lips stretched wide open over my teeth, unable to touch each other. I don’t get nearly as many stares as I go about my life. My husband and I own a small business making and selling certified elderberry syrup, and we vend several times a week at various farmer’s markets. I frequently wonder if we would have as many visitors to our tent when we have our masks on as we would with my mask off and my face exposed. Before masks were part of our everyday outfits, I routinely experience people staring, whispering about me, pointing, or simply turning away, not wanting to even face me.
The other side of the story is oftentimes when people see my face, I get pity and sympathy. People assume my intelligence based on my appearance. The other day, I was at a store asking for firewood and the employee couldn’t understand me, despite speaking slowly and enunciating my words to the best of my ability. I finally wrote down ‘wood’ on my hand. The second he understood what I was asking him, he started speaking slowly to me and enunciating all his words, as if I couldn’t understand him or as if I was less intelligent. Essentially, he equated my perceived lack of intelligence based on how I looked and how he interpreted my voice. He was very kind and trying his hardest to help me, but he didn’t slow down and change his demeanor until after accommodation had been needed. Only then did he seem to assume my ability or intelligence level.
This may all seem to indicate I am ashamed of my face or of needing any sort of accommodations due to my speech. This could not be further from the truth. I love myself and love my body. She’s gotten me much further in life than doctors ever thought, and I couldn’t be more grateful for her. This body has lived overseas, gotten a master’s degree, allows me to be the foster parent to some wild teenagers, and live all the adventures I’ve ever wanted to. But it can be exhausting trying to pump gas or sit in my kids’ karate class and be stared at constantly.
I know the stares are oftentimes people trying to understand or creating narratives in their own heads as to what could have happened to me to result in various tubes and an atypical looking face. I do not speak for all people with medical conditions or disabled people, but I know I would much rather be asked a question about why I look the way I do than be whispered about as I pass you by.
It’s okay to ask questions! Human beings are curious and instead of silencing that curiosity, we need to learn to embrace it. Maya Angelou said, ‘I did then what I knew how to do. Now that I know better, I do better.’ We cannot be expected to do better until we learn, and learning is the hard part. It’s easier to create stories in our head, assume things, or ignore people instead of having awkward conversations, opening our minds up, and having our lives and behaviors changed. The change is the beautiful part, though, when we open ourselves up to new people and new ways of living and thinking.
If I could do anything in life, it would be to normalize every body. We are all made so incredibly uniquely different and we must abandon the ideal there is any ‘normal’ and anything different from that needs to be treated differently. People move differently, eat differently, breathe differently, and live differently than you may and instead of worrying about that, we can choose to celebrate those differences and remember how vibrant and diverse our world is. It is such a privilege to learn, grow, and share from those different than us, and every day, we can choose to embrace those opportunities. Share stories like mine with your friends, teach your kids to love, accept, and affirm all bodies.”
This story was submitted to Love What Matters by Hannah Setzer. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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