Unmasking the truth: Being a deaf lipreader in a pandemic means increased social anxiety

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Lisa A. Goldstein outside of her home in the South Hills. (Photo by Jay Manning/PublicSource)

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I’m not embracing the green phase.

In the early days of the pandemic, I wrote about what it’s like being a deaf lipreader in the mask era and how I was adjusting to newfound challenges like grocery shopping and participating in virtual meetings.

Now, a whole new set of challenges is arising. We’ll likely be wearing masks in public spaces for the foreseeable future (at least, those of us who are following the rules), and with mask-wearing now the new normal, what does that mean for those of us who are deaf and hard of hearing?

While under shelter-in-place orders, we were all in the same boat, stuck at home. In the yellow phase, we were able to venture out in public a bit. I was able to avoid doing so, as my hearing husband has been doing our weekly grocery runs. But now that more places have reopened during the green phase, I can’t always avoid public interactions, and pretty much all of the masks people wear don’t accommodate lipreading. 

When my daughter was unexpectedly admitted to UPMC Children’s Hospital for a newly diagnosed autoimmune disease, I got in touch with the hospital’s disability representative. As a result, Safe’N’Clear masks were ordered for my daughter’s floor and in place by the time we arrived. Not everyone wore them, but for important conversations, the key speaker did. This allowed the focus to be on my daughter, as it should be. Being part of the conversation — like any other parent — made an already stressful time slightly easier. 

When we recently brought her to college for the first time, we met with the doctor there who will be overseeing her care. Prior to the visit, I unsuccessfully tried to find an accessibility contact. The hospital website even had a TTY (Teletypewriter for the Deaf) number, though no one these days uses one. I emailed and called and never heard from anyone, so I put a clear mask in a Ziploc without touching it and hoped the doctor would be OK with wearing it. This kind of stressor and hassle is something I have to deal with all the time these days. 

I was also faced with a new challenge when my school district had a special Zoom board meeting to discuss its reopening plan. There were more than 1,200 people participating at one point. Initially, I wasn’t going to bother, figuring (rightly) that I wouldn’t be able to follow. My hearing husband could represent both of us. But I didn’t want to be left out of such an important topic since my son is a high school sophomore, and there’d be too much for my husband to interpret. The school board members appeared on the screen, but I couldn’t enlarge their windows to read their lips. I resorted to using a free speech-to-text app that I had to restart every 40 minutes. When I desperately needed this app later on, I was out of luck because I maxed out on my free minutes due to all the long school board meetings. Eventually, I paid to upgrade to the next level, which has more minutes. Be thankful this isn’t something you have to think about!

Then there are smaller matters. 

While no one likes wearing masks, for me there’s another inconvenience. They have a tendency to get tangled up with my hearing aid and cochlear implant. I so wish I could take my mask on and off with ease. I did start using a crocheted mask extender with buttons, so now I wrap my mask around those so the elastic doesn’t get twisted or yank on my hearing devices.

Rather than letting my hair grow wild, I ventured into my salon, nervously prepared for everyone wearing masks. Once there, I felt like I was surrounded by a sea of evil Star Wars stormtroopers, with no Jedi in sight to save me. I told my stylist I had an app that would transcribe what she said. I forgot to tell her that she didn’t have to grab my phone and speak into it for the app to work, so I ended up with a new anxiety over the potential for contamination. 

Even social events are a minefield. The more people there are, the more spread out everyone is. My excellent lipreading skills can’t surmount distance. I also find myself avoiding things I used to enjoy, like going to stores by myself. I don’t want to worry about one-way conversations.

“Adfl etgjw ilserj mjikas!” That’s what everyone will sound like, if I can hear them at all.

What’s a deaf person to do, at least until face shields become de rigueur?

A smart phone with a directional microphone to transcribe conversations to text. (Photo by Lisa A. Goldstein)

There are old-fashioned methods of communicating, like dry-erase boards or paper. But these methods aren’t suited for extended communication. I looked into speech-to-text apps for high-accuracy captioning. A subscription is more than $450 a year. As a freelance journalist, I don’t have an employer or sugar daddy who can bankroll it. 

As with most captioning, especially the computer-generated artificial intelligence kind, there are transcription errors, leading to silly phrases that make no sense, like “No sir, top okay customer for banana.” In general, I’m able to get the gist. 

Pennsylvania mask requirements allow people to remove face coverings if communicating with people who read lips. I’m glad this is in place. Still, it increases my risk. Ideally, the person would gesture to their mask and offer to remove it, giving me time to get more than 6 feet away before we talk.

I dread these awkward interactions. I don’t always know when someone’s speaking to me, and they won’t always know that I can’t hear. I’m going to feel funny aiming my phone, sometimes with a directional microphone (to better transcribe people at a distance). But I tell myself that this will be eye-opening for others and make them realize how privileged they are to hear.

I don’t want to get COVID-19 and end up seriously ill. If I end up hospitalized, I’ll be segregated. Everyone will be wearing masks, and my husband won’t even be able to interpret.

It’s ironic; I’ve been deaf since birth, but the current situation is when I’ve been most cognizant of my disability. After years of independence, I’m frustrated to be cut off from the world. I’d rather be in this temporary position, however, than to feel like this all the time. And at least I have tools to help bridge the gap.

Lisa A. Goldstein is a freelance journalist based in the Pittsburgh area. She can be reached at lisag@steinsquared.com or @lisarati.

This story was made possible with the support of the FISA Foundation.

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