In July of 2021 I sent an article to The New York Times op-ed page entitled “Paralyzed Like Me.” The essay below may be dated in at least one sense since, at the time this article was written, the masks were indeed coming off. Unfortunately, the article was rejected, but since I have a blog, why not publish the piece anyway? I’ve chosen to leave the text unedited nonetheless to give you a better sense of where my mind was at when I first wrote this essay. And for the record, anything I’m writing in this blog I want to be at the level of an op-ed piece for The New York Times since my primary goal is to be a professional writer. I hope you enjoy the essay.
Paralyzed Like Me
The first time I met someone like myself was back in 2002. I was 33 years old, and up to that point I’d never met anyone else with Moebius syndrome. The closest I’d come to seeing a person with my neurological disorder was when a friend brought in a videotape to my workplace in the late 1990s to show me where two young girls with Moebius were featured on The Oprah Winfrey Show. Both of these girls were slated to undergo smile surgery where a nerve is taken from the leg and transferred to the sides of the face affected by the paralysis. Smile surgery isn’t guaranteed to work, and even if it does, the surgery is not a cure for Moebius syndrome. It simply gives those of us who have lived with facial paralyses another tool in our toolbox.
I’ve thought about this a lot about this during the past year as wearing masks has become a major part of our lives. The rest of our nation’s narrative has been surprisingly similar to my own tale of living with a disability. After all, masks have become an integral part of our toolbox. They’re not always guaranteed to work, especially if we’re continuously exposed to people who are infected, but they provide at least a modicum of protection toward a disease and its variants that have spread worldwide, killing well over 600,000 people in the United States alone.
Perhaps the most striking thing that I’ve noticed in meeting someone like myself was not so much the lack of facial expression as much as how we rely on visual cues in order to communicate with each other. Case in point: In 2002 I went to my first Moebius syndrome conference where I would finally meet other people with facial paralyses in person. Not every person who has Moebius syndrome is alike. Some people, myself included, have bilateral facial paralyses. Other people might have more facial expression but still have problems expressing themselves through speaking. Some are almost entirely nonverbal but communicate through cell phones or iPads. But to see how other people viewed me by my own lack of facial expression was stunning. When I talked with another man about my age, I kept looking for subtle responses – a twitch of an eyebrow or cheek, a small hint of a smile at the corner of his face – I would instead see nothing. It was indeed almost a blank slate. I had to relearn how to communicate with myself in a very unique way since there were so few other cues to go by. It was both humbling and at times infuriating. I had to catch myself several times with my own impatience because now the shoe was most emphatically on the other foot. And of course I already knew what it felt like to be the one on the receiving end of this communication breakdown.
Well, for the past year, most people have worn a mask. To some extent, everyone has been paralyzed like me, even if only temporarily. And what’s even more significant is how we’ve had to treat each other because of the pandemic. Due to social distancing measures, we walk around each other the way other people used to walk around me: Treating me like a leper, staring in another direction, not daring to look me in the eye, perhaps even going silent if they’re with friends or family. Yes, that’s been my experience on what it’s like to live with a visible disability. Moreover, because of the masks, it’s been almost impossible to know someone’s true intentions. You have to go with verbal cues, eye contact, or different forms of body language just to get your point across. To that I say, welcome to my world.
And now the masks are starting to come off.
As of this writing, according to the new CDC guidelines, anyone who has been fully vaccinated can now move around outside and in certain indoor environments completely unmasked. While I acknowledge that this is something of a relief, for many people it also challenges what have become the social norms during the pandemic. Many people wonder if it’s too early for this to happen and will exercise caution in removing their masks, to which I say, bravo. It’s okay to wear that mask if it’s what you’re most comfortable with. If it helps keep you safer until you’ve been fully vaccinated, or if you decide to wear a mask in the future when you have a cold or other illness, good for you.
Of course, almost all of you have that luxury of removing your masks. For those of us with disabilities, it’s been mostly a blessing to watch all of you struggle with what we deal with every day. But you can rest easy knowing that this condition of being masked is temporary. We can’t. And therein lies the rub: Whereas many of you will not be judged for removing your masks and returning to a normal way of life, for those of us with craniofacial disorders, the stress of removing those masks means that we will be perceived once more by how different we appear in real life. You see, when we wore the masks, fewer of us had to worry about our facial differences being noticed. For once, we weren’t being scrutinized for being different. Our disabilities were now hidden from view. We were temporarily on a more level playing field.
Now that we’re trying to find our way in a new normal, I’m left wondering if we’ve learned anything from this experience. Has living through this pandemic brought any new sense of empathy? Are we better prepared to accept people with disabilities or other physical or mental impairment now that so many of us have been affected by Covid-19, directly or indirectly? Will we be more forgiving of people who are impoverished because of disability or infirmity? Unfortunately, past experience has taught me that widespread empathy for people with disabilities is still a long way off. Even with more people experiencing homelessness, decreased or slashed incomes, and having faced increased levels of isolation because of the pandemic, most people are focused more on their own immediate concerns. They may not have had the time or energy to develop increased insight into how other people feel or experience the world unless they have friends or family members who have been through similar issues. This is profoundly concerning since for many of us with disabilities, we are the ones who are most often left behind even when the economy is at its peak.
No toolbox is too large to make room for more tools. Maybe it’s time for us to consider adding empathy to that toolbox. It might not change things overnight, but at least it gives us another way to weigh our options as we continue on our long, difficult road of recovery out of the pandemic and into whatever the future holds for us next.
Freedman on the Go 