"Masks are a double-edged sword for people like me. The D.C. area has one of the highest per capita populations of deaf and hard of hearing people."
Social distancing may be the new normal, but I have been slowly social distancing, so to speak, for the last 18 years, ever since I had brain surgery to remove a benign tumor on my hearing nerve. The operation robbed me of my hearing in one ear, while the hearing in my other ear has been gradually declining over the last decade.
I am what you would call “late deafened,” since my hearing has slowly declined since age 19. Through my hearing loss journey, I have experienced many of the same rocky throes that we are all going through now—isolation, anxiety, loneliness and worry about the future.
The fact that my own journey has somewhat prepared me for the emotional ramifications of this pandemic doesn’t make it any easier.
Social distancing feels like it is diminishing what it means to be human by limiting our social and emotional connections to others, but it is necessary in fighting the coronavirus.
And yet, another defining characteristic of being human is the ability to adapt quickly. In our modern age, we have adapted to these challenges through regular use of FaceTime, Skype, Zoom and other video conferencing communication tools that allow so many of us—including the deaf and hard of hearing, through a combination of lip reading, captioning and American Sign Language (ASL)—to communicate with family, friends and co-workers.
Universal mask-wearing is also a necessary tool for combating COVID-19. I have been a huge proponent of mask-wearing from the beginning, although masks are a double-edged sword for people like me. The D.C. area has one of the highest per capita populations of deaf and hard of hearing people in the country.
Masks pose major communication challenges for the deaf and hard of hearing. Some deaf people rely on American Sign Language, while others, like myself, rely on a combination of hearing aids or cochlear implants with lip reading. Because a mask covers a speaker’s mouth, any attempts at lip reading are quashed while also muffling the person’s voice. It also is harder to communicate in ASL because so much of sign language relies upon facial expression, which can be difficult to understand when more than half of a person’s face is covered in fabric.
My husband, Alex, helps me a lot with communication barriers—for instance, if we are wearing masks while grocery shopping. But my greatest fear during this pandemic is what would happen to me if I got sick and had to go to the hospital. It’s funny because the other day, I told Alex how silly it is for me to be so afraid when I literally survived brain surgery!
Yet, as I follow news reports about loved ones being banned from the ICU, the fear becomes acutely real. Without Alex repeating or enunciating words for me, how would I understand what the doctors and nurses were saying, particularly in the midst of the chaos? Would they have the time or patience to write what they are saying on a pad of paper? Would I be allowed to bring a disinfected phone or tablet with a captioning app, assuming there is even WiFi, in the ICU?
I hate to admit that these are all thoughts that have kept me up at night, but they have.
A few weeks ago, a story went viral on social media about a college student in Kentucky who was producing homemade masks with clear panels over the mouth, for use while communicating with the deaf and hard of hearing. It offered a glimmer of hope that these problems were becoming better understood by the larger public, even if homemade masks like these could not be used in medical settings. (Only FDA-approved clear-window surgical masks by companies like SafeNClear can be used inside hospitals, and there’s a shortage of those.) For these masks to be useful in non-medical settings, people with regular hearing would have to wear them in order for the deaf and hard of hearing to benefit—something that seems very unlikely to happen after the social-media-viral feel-good momentum of this story fades away.
I applaud this college student’s efforts to tackle a problem that affects 48 million people in the United States who are deaf and hard of hearing. Nevertheless, what needs to be available in large supply in hospitals throughout the country, particularly in the D.C. metropolitan area, are the FDA-approved clear window surgical masks.
In the meantime, I know how lucky I am. I have a stable job that allows me to telework, which shields me from exposure to COVID-19, as well as the financial dislocations so many are experiencing. In light of everything we know right now regarding exposure and communication barriers, I feel safest after my work day, snuggling on the couch with my husband, our cat, and a good book or TV show, away from the worries of a muffled and uncertain world outside.
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