> LIZZY: Hi, this is Lizzy with Fun 4 the Disabled. Welcome to our COVID-19 series, where we’ll be discussing how the pandemic is affecting the lives of people with different disabilities. Today, my friend Maya Larson is here to talk with us about how mask usage affects people who are Deaf or Hard-of-Hearing. So hi, Maya.

 

>> MAYA: Hey, Lizzy, thanks for having me.

 

>> LIZZY: Thank you for being here. First, would you introduce yourself to us?

 

>> MAYA: Hi, my name is Maya Larson. Like Lizzy said, I’m from Minneapolis, Minnesota, and I’m a college student. I am Hard-of-Hearing and Low Vision.

 

>> LIZZY: Thank you. We’re so glad to have you here, and I’m very thankful that you could talk with us today. The first thing that we’re wondering about is how has mask usage affected your daily life?

 

>> MAYA: The pandemic has affected every single one of us in such different ways. Everything has changed. But to be honest, I think for me, masks have been — I don’t want to say hardest change, but one of the biggest challenges that I’ve experienced in this time.

 

I was born hard-of-hearing, and I got into hearing aids at a pretty early age, but I really relied on lip reading my whole life. What that means is when I’m talking to someone, when I’m talking to Lizzy, I am watching her mouth and noticing different shapes and different movements that helps me piece together the things I might miss. So I might hear a sentence — if the sentence is, “I have a dog,” I might hear “I — dog,” but I can kind of piece together the rest of it, “I have a dog” by seeing someone’s lips.

 

So masks have really affected my ability to understand people, particularly at a grocery store or coffee shop or something like that. Because in my home, with my parents, the people I live with, we don’t wear masks, so I’ve been okay. But every time I go out, whether that’s to the grocery store, the post office, or just on a walk and run into a neighbor or something, I really, really have a hard time.  Because just like I explained, I completely rely on looking on someone’s mouth to help me put things together. When all of a sudden that’s completely shut off, in combination with me not knowing someone’s voice, it’s almost impossible for me to hear.

 

For example, if my parents are wearing a mask, or my boyfriend, I can understand more of what they’re saying because I’m familiar with the intonations of their voice. I can understand what the beginning of one word might have become, because I know how they speak. But with a complete stranger at the grocery store yelling at me because I’m doing something wrong, I have no idea what they’re saying. It’s been very frustrating, for sure.

 

There have been quite a few situations that every Deaf and Hard-of-Hearing person has experienced this. But a situation where you’re just frustrated because someone is trying to tell you to do something, and you can’t understand them, and they think you’re ignoring them or being rude or whatever. It’s really frustrating and embarrassing for us, but also for the person getting mad. It’s just not a good situation overall.

 

Masks have really affected my ability to communicate with people and really inhibited me for going out in public and trying to communicate with people. I’m sitting here talking about masks with a lot of privilege as somebody who is able to use English and has some hearing. There are a lot of Deaf people who only use ASL, and interpreters can’t work in the same way. Masks only make that worse, too. If you know anything about ASL, it’s a visual language. Your facial expressions are almost as important as the hand motions you’re doing. When you have a mask on, that really limits the message.

 

>> LIZZY: You already started talking about this, but how does the difficulty with communication and the masks make you feel?

 

>> MAYA:  It’s really frustrating. It’s really frustrating. I think everyone has a hard time communicating on a daily basis, for whatever reason. If you’re anxious, if you’re tired, if you just don’t want to listen to the person you’re talking to. But for Deaf and Hard-of-Hearing people, it’s just this added stressor on an everyday basis. We don’t know if we’re going to be able to hear anyone, or hear what they’re saying, or telling us to do.

 

I talked about it earlier, but it leads to a lot of frustration and anger, whether that’s on our part or the part of somebody trying to explain something to us, or tell us to do something when they don’t know that we’re Deaf or Hard-of-Hearing. It makes you feel very isolated, very “othered.” Just like this person doesn’t want to try to communicate with you, because often, when you say, “I can’t hear you, I’m Deaf or I’m Hard-of-Hearing, I’m whatever. Could you talk a little slower, or can you repeat that?” they just shut down.

 

Every person has heard this classic phrase that we talk about in the community, that, “Oh, never mind.” We just get told that all the time when somebody doesn’t want to take the time to talk a little slower or something. I think that’s really exacerbated with masks — which for very legitimate reasons, because people are kind of terrified of other people. You never know who has COVID right now.

 

I would say the one word I would associate with it is just frustrating, because either I can’t hear. I kind of just have to pretend, or the other person will get mad and stop trying to communicate with me.

 

>> LIZZY: What do you think this says about the way society, or non-disabled people especially, think about deafness or disability in general?

 

>> MAYA:  That’s a really great question. I think this pandemic has really exacerbated the lack of knowledge that the general public has on disability, and the fact that it’s just not something that people think about on an everyday basis. That’s been shown in many different disability communities in many different situations.

 

I think one we commonly talk about is people saying blanket statements, like, “Well, young people don’t die from COVID,” completely ignoring the hundreds of thousands, probably millions of young people who have different preexisting conditions that might make them more susceptible to severe illness or death from COVID-19. That’s just something that we assume every young person is able-bodied and able to fight off this disease.

 

Another example of that is with personal care assistants, or caregivers. A lot of people with multiple or severe disabilities may rely on a caregiver or personal attendant who helps them throughout day-to-day tasks, whether that’s getting up and getting ready, or throughout work, or even for Deaf or Deaf-Blind people, interpreters, too. The nature of this pandemic has really cut all of those resources off, right?

 

Because you know you can’t go anywhere. At least at the beginning, we really, really stressed isolation, and that left so many disabled people just alone, completely separate from the way that they access the world, which might be through other people.

 

I’m Deaf-Blind, obviously, and that’s my main community. People who have more hearing and vision loss than me might use Tactile Sign Language. What that means is it’s American Sign Language, but it’s signed into someone’s hand. So a lot of Deaf-Blind people use Tactile Sign Language, which has now become impossible to use Tactile Sign Language with somebody who’s not in your quarantine bubble, because you can’t just walk up to your friend at the coffee shop or whatever and use Tactile Sign Language. That’s really changed things for sure.

 

Then obviously, just with masks. They’ve really affected Deaf and Hard-of-Hearing people, and a lot of people don’t think about that. I know I’ve had some conversations with autistic people who have talked about how masks cover up more facial expressions, so they have an even harder time looking for these social cues that might not come natural to them.

 

I know this series is going to interview some people with different experiences. But it’s really something that is obviously so important, and I’m never going to advocate for not wearing a mask, because I believe in public health and science. But it is very frustrating, in there are ways that — unintended consequences that it’s had.

 

>> LIZZY:  You have such good insight. Your way of explaining it is so clear, that I feel like this could really be opening a lot of people’s minds.

 

>> MAYA:  I’m so glad. I think because to me, I know all this stuff, so I feel like I’m just rambling about something everybody already knows, but that’s obviously not the case. I have this lived experience, and so many people don’t or don’t have loved ones or friends with this lived experience, so how would they know? It’s not people actively trying to be able-ist or ignore disabled people, but if you haven’t had that exposure, that life experience, you don’t know any differently.

 

>> LIZZY:  My next question is what are your thoughts on the masks with the clear plastic window?

 

>> MAYA: First of all, I’ve never seen one in person. So this is all just my assumption, and what I’ve seen on the Internet and heard from various friends. I think they’re a good effort. I don’t think they work great. Practically, I know they fog up. There are ways around that. You can put a little dish soap on it. That’s an easy way to do it, but they do fog up, and that can be irritating and make it hard to lip-read.

 

It’s also not just the lips that people watch. If I cover here and here —

(covering her cheeks and nose/mouth area)

— you don’t get as much as you get from a full face. You might get more than this —

(covering her mouth)

— but you still don’t get everything, because the way I move my cheeks or if I smile or if I frown or say something; or if I’m saying something weird and I make a weird face expression, that is all limited by a face mask. Even if it has the little lip cut-out.

 

That’s a necessary thing to understand. A facial expression can tell me if somebody said mad or bad or sad. Those are all very different words that start with just a different consonant that I could easily miss. But somebody’s facial expression could really help me figure out which one it was. Unfortunately, those masks with the window don’t necessarily fix that.

 

I think they’re a good attempt, and I really appreciate that people are doing it. Like I said, I’ve never seen one in my life. I don’t know if that’s just my city.

 

I am a big fan of the face shields that some medical professionals have. Obviously, that’s not possible for the general public. For example, both my hearing aids broke a few months ago, which was very convenient (chuckling), and I had to go to my audiologist. He had to come outside of the clinic and come see us in the car. But because he’s an audiologist, he works with Deaf and Hard-of-Hearing people every day.

 

So he had one of those clear face shields instead of a mask, because he knows so many of his clients rely on lip reading. That was a way to still be very safe, but in order for me to physically see everything, which was very helpful. Again, that’s not practical for everyday use, unfortunately. Most medical professionals don’t use those. Or if they do, they double up with a mask for safety reasons, which is very legitimate.

 

>> LIZZY:  I haven’t seen anybody wearing the mask with the clear window around the mouth, either, which I think is another issue with it.  Even if it is a slight improvement over your regular traditional full over-the-face mask, it’s such a niche thing to see actually when you’re out and about, like at the grocery store or the post office — which is another thing about accommodations. If they’re available, they have to be available widely, all the time, not just random.

 

>> MAYA:  Definitely.

 

>> LIZZY: You addressed this with the clear face shields option, but have you seen any accommodations for this communication barrier while you’re out and about, aside from the face shield?

 

>> MAYA:  I haven’t really seen other things. One thing that I can think of is I was picking up take-out once, and this particular restaurant had this glass window set up between the customers and the servers, but we were both wearing masks as well. But I could see that potentially being something, particularly for maybe banks or things like that, where you don’t need to physically exchange something, but you need to communicate. That’s helpful. However, the sound gets a little bit wonky with various different materials, so it doesn’t travel as easily. But sound doesn’t travel great with a mask also.

 

What I’ve done for the most part is typically, when I go somewhere out in public, I usually have someone with me. I would say that’s a pretty normal thing, because I have limited vision also, so it can dangerous for me to be walking around alone without my cane. But usually what I do is if somebody says something that I don’t hear, I look at whoever I’m with, whether it’s my parents or my boyfriend, and say, “Can you repeat that?” because I know their voice a little bit better. I’m more likely to understand it when they say it than when the stranger says it.

 

My boyfriend also knows a little bit of ASL, so he can try to use that to help me. But to be honest, I haven’t heard and/or seen anything that’s really some astonishing way of making masks more accessible and being safe more accessible. I wish I have.

 

>> LIZZY: I’ve heard of some grocery stores offering white boards at the register for people to communicate with, instead of talking to each other, and wiping down the pen and the board in between. Do you think that would be an accommodation you would want to see out and about?

 

>> MAYA:  That would be nice. The issue with that is usually things like that are hidden away. You have to ask for them. I think what would be really great is if we tried to normalize every counter or wherever you are, just having a white board and a pen right there, so you don’t have to ask, “Oh, can I have a white board? I can’t hear you,” like a Deaf person who doesn’t know English doesn’t have to — you know.

 

So yes, I think having a white board and a pen very easily accessible and wiping down in between would be a good, at least first step. It might not be perfect, but it would be better than nothing.

 

A lot of times, what Deaf people or Hard-of-Hearing people do when they’re ordering something at a coffee shop or a restaurant, or asking someone for help, is they’ll write a note on their phone, and then show that person their phone. But that’s harder these days, because phones are so small, and you can’t really read that tiny print from further ways away. So I think something like that white board idea you’ve seen would be definitely a step in the right direction.

 

>> LIZZY:  It always comes back to, like you said, accommodations being available, but only if you dig for them, and they’re not really advertised. Because personally, when I’ve gone to the grocery store, I’ve never seen that, but I saw it on the Internet once. So somewhere, some grocery store has a white board available.

[Both laughing]

How have you been coping with the issue that the masks brings up? I guess what suggestions do you have for other people who might be dealing with the same situation?

 

>> MAYA:  I’m going to take this question in a couple different directions, and go on a couple different tangents.

 

First of all, with everyday life, grocery store, post office, coffee shop, that’s really difficult, because these are people you don’t know, that you’re only going to interact with for 10 seconds. You can’t exactly sit there and be, “Hey, I’m hard-of-hearing, can you just talk a little slower, a little louder?” You can’t really give them the whole spiel when there are 10 people in line behind you.

 

So for me, having somebody with me to help has been essential. I think there’s this attitude in the disability community where there’s a big stress on this term “independent living,” and that means disabled people being able to do things by themselves, and learning how to do things by themselves. Which is so important, because for centuries, disabled people were expected to just be taken care of, and now we’re proving that we can take care of ourselves.

 

But I think it’s also really essential that we don’t let this independent living mindset stop us from asking for help, or accepting help, or admitting we need help. That’s the acceptance I’ve come to with this situation. I’m sure there are some Deaf or Hard-of-Hearing people out there who are just killing it with masks, and they might be able to have better advice than me. But what’s worked best for me has been having somebody I know with me.

 

Another tip that I’ve tried to use is really rehearsing my order. For example, if I’m going to a coffee shop and I’m going to get a hot chocolate and a cookie, practicing (in enunciated speech), “Large hot chocolate and chocolate chip cookie,” and making sure I get each point, so they don’t have to ask, “What size?” or “Which kind of cookie?” Just to try to make it as enunciated and clear as I can first off.

 

A lot of times, what happens is I’ll try to order something and they’ll ask me a question, “What kind of milk?” and I can’t hear that question. So trying to plan ahead and just have everything ready has been something that’s been helpful for me, practicing it — as lame as that sounds.

 

For me, too, I’ve had speech troubles throughout my life, and I’ve done a lot of speech therapy. When I wear a mask, it almost reverts my speech, and I feel like my speech gets worse. I really have to practice trying to enunciate, so other people can understand me, too, even if they’re hearing. That’s my sort of mediocre advice for public life.

 

As far as that goes with socialization, I have seen family and friends. We’ll be six feet apart outside, so we’re not necessarily wearing masks. However, I always check with a person if I’m going to hang out with them first, and say, “Hey, if we are six feet apart from each other, and outside, would you want to wear a mask or not?” If they say yes, then I say, “Hey, I’m really sorry, but I just have a super hard time understanding you. Could we Facetime instead?” That’s happened a couple times. That’s been fine.

 

It’s great to see people in person, especially now, but usually that person wants to wear a mask to protect themselves or a family member. So of course I’m not going to say, “Well, my disability is more important than your disability,” something like that. It’s just really being flexible and communicating right up front about that.

 

I’ve also had a really hard time — we’ve done a couple social distance dinners with family friends. When a person is over 5 feet away from me, I can’t usually hear them. So just being very annoying sometimes, and advocating for yourself, which I know is very hard. Not being afraid to say, “Hey, can you speak up a little bit? Can you enunciate a little more? I’m so sorry I can’t hear you.” People never purposely try to exclude you or make you feel different because of your disability. They just don’t think about it. Just those gentle reminders can really go a long way.

 

Another piece of advice that I have from more of the work, professional life, school side, is as some people are returning to be in physical spaces together, I will always choose — recommend — prefer to be online in a Zoom call or something. I’ll make that very clear.

 

For example, at my college, some people are going back in person this year. As much as I would love to be on the college campus with my friends, everybody will be masked, which is so important for a public health perspective. But for me, it’s going to make it impossible for me to know what anyone is saying, which is kind of the point of college. You have to listen to people. So I’ve decided that being online is the best move for me.

 

Just thinking ahead with those particular situations, and seeing how you can manipulate your way around, and have a situation where you are virtual. Which I know isn’t great for some people. Obviously, evaluate whatever works for you. But for me, virtual is better than trying to struggle through in person with a mask.

 

I think my biggest piece of advice, which is advice I need to give myself, because I don’t follow this. But just is not being afraid to say to the random stranger, “Hi, I’m hard-of-hearing. Could you speak a little slower and louder, please?” Sometimes you’ll get that “Never mind,” but often, you’ll get somebody who wants to help. No one is being mean on purpose. When they know someone is struggling, they want to help them. They just don’t know how to sometimes. So by explicitly saying, “Hi, I’m hard-of-hearing. Can you talk a little slower and louder because I can’t understand you well with a mask?” That gives them an action step for what they need to do to help you.

 

Frankly, this is something that this incredible woman, Rebecca Alexander, who has the same genetic disease that I have, talks a lot about. But when you as a disabled person are vulnerable and are willing to ask for help, the person helping you is feeling better about themselves, because they’re helping someone. They are able to make the world a better place. They benefit both the disabled person and the other person trying to help.

 

>> LIZZY:  Is there anything else you want people to know about masks and the issues they pose to Deaf and Hard-of-Hearing folks?

 

>> MAYA: I think during this time, everybody has a lot that they’re worried about, and rightfully so. This is a very stressful time for everyone in very different ways. This is a message that I want everyone to hear, and it’s also something that I need to hear myself, and remind myself every day. But it’s really just to have compassion and empathy. Be willing to slow down for a second, and talk a little slower when a Hard-of-Hearing person asks you to.

 

This is relevant for so many different things in COVID, right? We’re really seeing how our actions can affect other people, which is something sometimes we’re not used to. I think that’s the pinnacle of able-ism, also. We just do things that we don’t think affect other people. We don’t think about how they would affect other people, because we don’t need to.

 

I don’t need to think about how stairs get in my way, with the issue of stairs, because I can walk. Everybody has these things that we don’t think about, and that we can’t even imagine thinking about, because we don’t have the lived experience of it. I’m just going to leave it with my cheesy message about patience and empathy.

 

>> LIZZY: That was awesome. It’s hard to give people like complete strangers specific advice, because everyone potentially has such a different situation. You never really know what any individual is dealing with, especially if they have an invisible disability.

 

>> MAYA:  That’s so true. That’s something that often is tough about the disability community, too, because we’re all so different. So what helps one person might harm somebody else. If I need to ask somebody to talk a little louder or clearer, maybe they’re autistic or have social anxiety and have a hard time doing that. I’m inhibiting their life by doing what I need for my life. It’s complicated.

 

I think that just brings me back to that cheesy “patience and empathy;” really just trying to have grace for people, and understand the position that people are coming from, even when you don’t know that position. Just accepting that there is one that’s different than yours.

 

I think it’s really important to remember, also, that the Deaf and Hard-of-Hearing community is very diverse, and everybody has different methods of communication. Some people are completely oral. Some people are like me, where they’re mostly oral, but use a mix of ASL here and there. Some people use more ASL, but might be able to speak or hear a little bit. And some people might only use sign language and be profoundly deaf or not have any hearing.

 

It’s really important to remember that we all have different struggles during this time. I can only speak from my experience as somebody with severe hearing loss, but who wears hearing aids and “passes” as a hearing person on an everyday basis. So it’s really important to remember that we’re all different, and especially Deaf people who use ASL, I’m sure, have had very different experiences with masks than what I’m talking about with lip-reading and my experiences.

 

>> LIZZY:  I have been talking with Maya Larson today. I want to say thank you so much for your time and all of your insight. This has been really helpful, and hopefully helpful for our audience watching. I really appreciate you taking the time to talk with us about your experiences.

 

>> MAYA:  Of course.  Thank you so much for having me. I’m so grateful for everything that you and Fun 4 the Disabled are doing to try to elevate disabled voices and just everything. I’m really grateful to be able to be a part of this. Thank you so much.

 

>> LIZZY: Thank you.

[Both show sign for “I love you.”]

 

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