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Keeping people safe from COVID-19 limits deaf people's access. It doesn't have to be this way.

The things we need to stop the spread of this disease are also limiting the ability of deaf and hard-of-hearing people to fully participate in society.
Image: A frustrated woman wearing a mask and behind-the-ear hearing device surrounded by text bubbles and people in masks frantically speaking.
I can’t lipread a mouth covered by a mask, or a haltering, pixelated face on the videoconferencing platforms that are suddenly ever-present.Nhung Le / for NBC News

When I lost almost all of my hearing at the age of two, the message I got from medical and educational professionals was clear: I was living in a hearing world and it was up to me to fit into it. To ask for accommodation from it was a sign of weakness.

But because I was so young, the doctors said I could still adapt to the hearing world, salvaging some shred of so-called “normalcy.” I was fitted with a hearing aid in what my doctor — laughably — called my “good” ear, enrolled in special training to make sense of the noises filtering through the new technology and went to speech therapy for almost 20 years to shape the words I can’t fully hear. And, like many deaf and hard-of-hearing people, I was never taught sign language.

So for the past 30 years — like many people with hearing loss — I’ve figured out how to hack the hearing world as a deaf person. I wear my hair down most of the time to cover my hearing aid. Many people assume my residual deaf accent is some kind of foreign one, and I usually don’t correct them. Instead of asking someone to turn her face so I can read her lips, I position myself where I can see her mouth clearly. I can’t talk on the phone, so when I need to make an appointment or resolve an issue, I drive to the office and deal with it in person. If I miss something in a conversation, I research it behind the scenes so I can fill in the blanks myself.

And I never ask for help unless I’ve exhausted every single option of doing it myself.

Then the COVID-19 pandemic hit; everything changed. I can’t lipread a mouth covered by a mask, or a haltering, pixelated face on the videoconferencing platforms that are suddenly ever-present. I can’t read the lips of the governor in my home state of Arizona during his press conferences, when he looks down at his notes or away from the camera at a presentation slide. Video meetings and livestreams, for the most part, don’t have real-time closed-captioning for the deaf and hard-of-hearing. I’ve been turned down for new freelance writing projects and consulting gigs because I can’t do phone interviews or participate in a weekly all-staff video call.

Even when I think I’ve figured out a clever hack for the new normal, it proves futile. When I tried to use an online relay service (an internet-based version of TTY, where an operator transcribes what the hearing individual is saying and verbally relays to them what the deaf person has typed) to make phone calls, the businesses on the other end hung up on me. I thought that, by ordering my groceries online, I could elude awkward interactions with masked people in the store but, when I arrived in the parking lot at my allotted pickup time, I faced a large sign: “CALL US WHEN YOU ARRIVE: 1-800…”

For the 466 million deaf and hard-of-hearing individuals worldwide who learned to accommodate a world designed around the hearing, the goal posts we were used to reaching have now moved. Accessibility has become even more of an afterthought than before; people like me are being shut out.

Well-intentioned people, for instance, have sent me stories about entrepreneurs developing masks with clear windows for ease of lipreading — but when I ask if they plan to purchase one, they claim they don’t need it. Others have recommended I learn sign language — yet when I ask if they plan to learn it, too, so the entire masked community can communicate with one another, they say they’re barely keeping their heads above water as it is and don’t have time to learn a new language.

And why would they? After all, I’m supposed to accommodate myself to their world; they aren’t supposed to have to make adjustments for me.

Despite all of this, I consider myself one of the lucky deaf people. I graduated years ago, so I’m not grappling with the challenges of online schooling, as so many deaf and hard-of-hearing children, teens and college students are. I have a few steady jobs as a freelance writer and college instructor, so I don’t have to try to navigate the tangled phone lines of unemployment agencies using a cumbersome relay service. I have a deeply understanding husband who — despite a decade of being with a stubbornly independent woman who insists she can handle things herself, thank-you-very-much — runs interference with mask-wearing folks and drives with me to the grocery store to dial the 1-800 number.

Still, it’s humbling and terrifying to ask for help, and yet here I am — a deaf person in a hearing world who was taught to never ask — doing just that.

I don’t want this to be misinterpreted as a call for doing away with masks; I trust the experts when they say masks are a necessary tool for preventing the spread of COVID-19. I want people to keep wearing their masks because, as a society, we need to protect and care for each other.

But I’d also like to be included in that society. These are incredibly isolating times for many, but they are more so for those of us who can’t as easily pivot to the new normal. Disability is a reality, and one for which we must account in these ever-changing times. Small things — like captioning your videos, providing email, text services or live chat as an option for those who can’t call you, or even purchasing masks with windows for your employees who deal with the public — can make a big impact for those with hearing loss.

And if you truly can’t do any of those things, at least make compassion your default. My husband has noticed that I’ve been leaving a wave of offended people in my wake when we’re out running errands, because I don’t reply when they talk to me. Of course, with their mouths covered, I don’t even know they’re saying anything — but my lack of reaction leaves people thinking I’m just not a very nice person, rather than wondering why I haven’t heard them.

The benefit of the doubt is not an unreasonable accommodation, after all. And then, when all this is over, I look forward to us all removing our masks, exhaling with relief and me finally “hearing” what you have to say.