Anita Rao
I remember when he told me. It was at the tail end of our second date, hours into one of those early get-to-know-you conversations. He mentioned that he had moderately severe hearing loss in one of his ears, something that happened suddenly in college after recovering from a bad cold. He tried hearing aids once, but hated the experience and never went back.
As the months passed by, I noticed the many ways he learned to adjust: always walking on my left side, sometimes curving the back of his other ear forward to hear people better. I started to adjust too, curbing my childhood habit of yelling to someone on the other side of the house to get their attention, and being mindful of what seat I take up at a restaurant.
But it hasn't been until recently, as we're planning for a shared life many decades into the future, that we've been talking more openly about how his hearing loss informs all of his relationships, including ours. For us, navigating this moving forward is going to require vulnerability, and sometimes uncomfortable conversations.
This is Embodied, our show about sex, relationships and your health. I'm Anita Rao.
One of those hard conversations on the table: should he try hearing aids again, and how can I best support him if that's the route he chooses? We're both well aware that hearing aids are just one of many options deaf and hard of hearing folks have when it comes to communication. There's also sign language, lip reading and cochlear implants. For those who do choose to use hearing aids, the process of adjusting to new and amplified sounds isn't always linear.
That's something writer Anna Pulley has thought a lot about. Anna writes a syndicated sex and dating advice column and is the author of "The Lesbian Sex Haiku Book (with Cats!)" and the "Love Where You Work" series. Anna, welcome to Embodied.
Anna Pulley
Thank you, hello.
Anita Rao
So you were not formally diagnosed as hard of hearing until your late teens. But as a kid, you started to notice in certain moments that you were struggling to hear. Tell me about the first time that you started to notice that.
Anna Pulley
Absolutely. I noticed that when I was 9, that was when it started to become apparent to me. And it was only because my brother and his friend started making fun of the mishearings that I was having when we were playing together. And you know, for many years, I just ignored it. I was like, "I'm gonna cope, I'm gonna adapt," in part because I just I didn't have the resources. And I didn't know any other people who were hard of hearing or deaf. And when you do, you know, in like elementary school, they give you a tone test, and I could always pass those. It was struggling with words and conversations that was really the most difficult part for me.
Anita Rao
So in the many years, you must have developed a number of coping mechanisms. I'm curious about what those were and how those impacted your relationships growing up.
Anna Pulley
They weren't terrific coping mechanisms to be honest. Basically, you know, if you're in school, and you don't hear something, you can look at your neighbor's notes, or there was a lot of guessing on my end, there was a lot of just, kind of, winging it. And I think it kind of formed a bad habit, because I still do that a lot today. There's a lot of nodding, thoughtful nodding, as if I'm following along when I have no idea what's going on in the conversation. And this has led to a number of really funny situations, but also some actually potentially scary ones. There was one where I was at a bar and this man asked me if he could come home with me. And I must have nodded at the wrong time, because when I got in a cab by myself, he followed me. And it was this very — it took about 20 minutes before we were able to finally understand each other and what was going on. But that was like the worst case of nodding leading something that I really didn't want to happen.
Anita Rao
So did those moments lead to disclosure or a conversation, or up until that point when you first got your your hearing aid were you not really identifying as someone with hearing loss?
Anna Pulley
There was kind of a family joke about it, you know, that I was deaf, but nothing was really done to address it. It was kind of like you're doing fine, you know, you're getting by, and right, it was only till I was up in a plane and my life depended on hearing that I was like, I can't do this anymore. And I had my, my pilot's license test, and I actually misheard the tower during the test and almost landed on the wrong runway — and remarkably, still passed. I don't know how, I mean, I had technical abilities so that was probably what did it. But I never got in a plane after that. I was like, things have to change. And that's when I really started to take it seriously. I started taking ASL, I started, you know — I really tried with the hearing aids. There is an incredible adjustment period, where, you know, your hearing gets worse, you can't hear anything, everything is so loud. Eating chips becomes this like World War II scene in your mouth. And a lot of people don't tell you that you have to just push through that, because it takes your brain at least a month before it starts to recognize those new sounds that are being processed.
Anita Rao
So in your first 10 years, you went through four different hearing aids, and for a while you only actually were able to afford one hearing aid at a time because hearing aids are so expensive. So talk to me about that and kind of how the access shaped your experience.
Anna Pulley
Yes, yes, that is a big problem with hearing aids. They are sometimes up to $7,000. And in all my years having insurance, they've never been covered. So it's an incredible expense. And also, they don't last very long. They last like three to five years, if you're really lucky. So the first hearing aids I tried, I sent them back because I wasn't ready, I think, to deal with the stigma. I wasn't ready to deal with that process. And then when I became a teacher, I was like, "Okay, it's really important for me to be able to hear my students." And so I submitted an — I think it was an essay, and like a financial aid application, because I was not making any money. I was working for AmeriCorps and making 10 grand a year, so I could not afford $7,000 hearing aids. And they approved me for one. They were like, "Here, you can have one hearing aid." And I needed two. But I was like, "I'll take it." So I tried again. And everything was louder, but nothing made sense. So that hearing aid went in a drawer.
About two years after that I got a better job that had insurance until I could afford it. And that's when I got my second hearing aid and tried that one again. And once again, just, like, couldn't adjust couldn't get used to it, until I read this really fantastic book by Katherine Bouton called "Shouting Won't Help." And she really details all the processes that are involved in adjusting to hearing aids. And that was when I finally was like, "Okay, I'm gonna really do it this time." And I got my hearing aids through Costco — I still get my hearing aids through Costco, which I find so funny. It's just like a big box store subsidizing my health. But their hearing aids are less than two grand. And they are top of the line. They're really good. So, you know, for better or for worse, that's who's become my defacto health provider when it comes to hearing. I think I was like 33 when I finally did that, so that's like a 13 year difference of suffering. And if anyone is considering getting hearing aids now, I definitely encourage you to do it earlier. You want to try to preserve as much of your natural hearing as you can, just so that, you know, the hearing aids end up working a little better.
Anita Rao
I think one of the lines or metaphors you use in one of your essays is comparing getting hearing aids to getting glasses, and how when you get glasses there is this a ha moment of like, "Oh, wow, okay, that's a stop sign. I can read it." But with hearing aids, at first your hearing for a while feels much worse. You say something like you go from hearing 50% or understanding 50% of sounds to 20%. And so I'm imagining that feels so frustrating to like, Okay, well, this just made everything worse. What's the point?
Anna Pulley
Yes, it is so frustrating. And I was very much like, "Okay, this is going to fix me, like, I'm going to be able to hear people again." And I think that does happen in rare cases, but for most people — it's such a complex process, the way our brains interpret sounds, especially with words and conversations. And so yeah, I was really hoping that they would help a lot more than they do. The hearing tech at Costco was like, "It's better than nothing." And I really took that to heart. At first it was a depressing thing to hear. But then after I thought about it, I was like, "You know what, you're right. If I can hear 20% better, then I can hear 20% better, and that's going to help tremendously in the long run."
Anita Rao
I'd love to talk a bit about the identity piece, and we're going to continue talking about this as the conversation goes on. I mentioned that you're an avid writer and essayist. And you wrote an essay about the intersection of your queer identity and your deafness and you said a line that said, "Being deaf is like coming out as queer. It doesn't happen just once. It happens over and over again, sometimes multiple times a day." So I'd love to talk — hear you talk a little bit more about that and this feeling of of coming out and how these intersections have overlapped for you.
Anna Pulley
Yes, absolutely. I think it's really, it's really true. When you have hearing loss, when you have a limitation and you need help, it's something that you have to just be really vocal about. And I'm not the greatest at this. I actually, in my last job, we had this all hands meetings, and there were 300 people in the company. If you didn't get there really early, you might be sitting way far at the back. And so I couldn't hear the speaker or what was going on. So I asked HR if I could have a post-it, you know, on a chair in the front, so that I could hear and I thought that was a very reasonable request. And I was told no. And so, you know, after you hear that over and over again, you kind of stop asking for help, which is really — it's hard. It's hard. So I've had to be very vocal, I've had to insist, I've had to really kind of tell people over and over again, every coworker that I meet who doesn't know, every like barista at Starbucks. This is especially during the pandemic, where everyone was wearing masks, and I just could not — I could hear 0% of things that were going on. And Vika would have to translate for me, my partner, and she was a lifeline. She was such a lifeline to that, but I sort of have an in between identity, like I don't totally fit in in the deaf community. I don't totally fit in in the hearing community. And so I think my queerness has actually really helped me come to terms with that and accept that part of me.
Anita Rao
All right, we're gonna continue this conversation with Anna just ahead. Anna Pulley is an advice columnist, and the author of "The Lesbian Sex Haiku Book (with Cats!)" and the "Love Where You Work" series. You're listening to Embodied from North Carolina Public Radio, a broadcast service of the University of North Carolina at Chapel Hill. Please stay with us.
This is Embodied, broadcasting from the American Tobacco Historic District. I'm Anita Rao.
Caela Daly
I had my first pair when I was 10 years old, and they were bright orange.
Harlan Kebel
I can still remember though, when I first put the hearing aid in, there was a tremendous difference in what I could hear.
Caela Daly
Just giving a person hearing aids doesn't mean that they're actually going to hear. It's really hard to learn sound. I was really surprised with, like, the refrigerator or dishwasher. I had to start being cognitive of where I was positioning myself. So at restaurants, I would have to make sure that I was sitting behind all the background noise, because hearing aids do pick up sound, but they pick up all of the sound. So it's much harder for your brain to differentiate.
Harlan Kebel
They're quite a technological advance, and they're rechargeable and they work through an app on an iPhone, where you can fine tune the volume and the tone and timbre, which sounded great to start with. It's really not all that great, though.
Caela Daly
Because I was born deaf and then moved to severe hearing loss, I definitely had a harder time being exhausted of hearing sound during the day. And even now, I don't like my hearing aids. I would prefer to live in silence and lip read.
Harlan Kebel
And sometimes it's very difficult to use. Some people's voice, it sounds like breaking glass. And I have to turn the hearing aids off or turn them down, because it's very distracting.
Anita Rao
You just heard from Caela Daly and Harlan Kebel. Hearing aids aren't covered by most medical insurance plans. And the out-of-pocket cost has been prohibitively high for decades. But a new federal rule allowing hearing aids to be sold over the counter may be a game changer in terms of who gets access. But hearing aids themselves don't instantly streamline communication between hearing folks and those who identify as deaf or hard of hearing. The role they play in romantic relationships in particular is actually much more nuanced.
Still with me is Anna Pulley, a novelist and advice columnist, whose essay on adventures and deafness explores the role of hearing loss and hearing aids in her own dating life. So Anna, you write a sex and dating advice column, which means that you really know the world of sex writing very well. And you've noted that there is very little out there about sex and hearing loss. So I'd love to know what were some of the biggest questions that you wanted support around early in your partnered sex life?
Anna Pulley
Oh my gosh, so many, I had so many questions and no one was talking about it, I think because we assume everyone who has hearing loss is like our grandmother or great grandmother. And we're uncomfortable thinking about elderly people having sex, which is a little silly. But yes, I was poring through the books. I was asking my doctors, I was looking through all the literature and not finding anything. So I realized that I had to make it myself. So some of the questions I had were one, like, can I even wear hearing aids during sex, because you're not supposed to get them wet. And you know, sometimes it's very sweaty endeavor. So, they were like, "Don't wear them. Don't wear them during sex." And I ignored that advice, because I would much rather be able to understand my partner. And so far they haven't broken, so fingers crossed. I was really trying to figure out how to make this work. Because I am the person who writes about sex, I really enjoy sex. I think that's a very, you know, important part of relationships and intimacy. So I ended up writing an essay where I interviewed I think, like, six or eight people who had hearing loss on, like, what they were doing, and it was — it was really heartening to hear one, the mess-ups. And just like, the ways that they coped and some were like, "You know what, it's a godsend because I'm not distracted. I am completely focused on my partner. I don't care if there's a garbage truck rolling by, I don't care if there's like a lightning storm. Like it doesn't matter, I — because I can't hear it I am going to be focused on my partner." Like, yes, that's so true. I didn't even realize it until I heard it from someone else.
Anita Rao
I want to bring someone into the conversation who you've talked about this stuff with a lot. It is your fiancee named Vika. You two have been together for more than two years. And you made a lot of changes to the ways you communicate and think about hearing loss in the context of your partnership. So Vika Mass, who is Anna Pulley's fiancee, welcome to Embodied.
Vika Mass
Hi, glad to be here.
Anita Rao
So tell us a little bit about the origin story of your relationship. I know you met online during the pandemic, tell me about that early dating period.
Vika Mass
So we did meet at the beginning of the pandemic. And like a lot of people, I thought this was going to last a month, maybe two. And so I'm like, "Okay, let me go online, meet some people, schedule some drink dates after we're allowed to venture out into the world again." And I stumbled on to Anna's profile, and we matched, and she reached out to me and we were initially texting one another. And then she asked for a video date. And I kind of freaked out a little bit. I was like, "Is this what — is this what the kids are doing now?" You know, this was before zoom was the norm. And you know, I'm used to being, like, going out with people, so if the date's not going well, there's a distraction, you can look around you. And that wasn't going to happen. So I kind of freaked out a little bit. But it was wonderful. And it wasn't until later that I realized that part of the video date wasn't just because it was a pandemic, but she can see my face and we can communicate that way.
Anita Rao
So Anna, you waited a little bit into the relationship, about five weeks, to talk to Vika about your hearing loss. I'm curious about what ultimately led you to telling her and how you approach that kind of conversation?
Anna Pulley
Yes, I try to tell people right away. Because you know, when you're meeting in person, you're usually, what, in a bar, it's loud. There's a lot of potential distractions. And so I tend to misshear, and people give me funny looks, like, "Why — like, we're not talking about peanuts. Like, why did you just say that?" And so I like to tell people, like, "If I misshear you, and you're like, we're not talking about whatever it is you just said, that's why." So, I am trying to circumvent and avoid those kinds of awkward conversations. But with Vika, I actually waited a really long time. And part of it was fear. You know, I was so into her. And I was like, "Oh, I don't want, you know, any potential thing to come between us." But also because we had these video dates, and they were wonderful. She was always looking right at my face, the lighting was good, like, there were no background noises. And if worse comes to worse, there's, like, captioning devices that help. So yeah, I waited a long time. But right before we were slated to meet, I was like, "Okay, I have to tell her," and, like, worked myself up for it. And she was like, "Oh, yeah, cool. That's fine. Like, no biggie." I was like, "Phew!"
Anita Rao
Yeah, perfect reaction. Well, how did you — I mean, so Vika once you knew, what were some of the changes you made in terms of how you communicate? What did you become aware of in your relationship?
Vika Mass
So once we met in person, and we started our relationship face to face, that's what it really needed to be: face to face. You know, when we were getting to know one another online, that's very easy to do. But as you're out and about in the world, as you're just engaging with the world, you're not always looking at the person when you're speaking, and now it's become just a habit for me. It's my new normal, but initially, it was definitely an adjustment that I would say something, and I would realize, "Oh, she didn't catch that. I have to turn around and make sure that she's looking at me and that she can see my mouth when I speak."
Anita Rao
I know that one of the things that I have struggled with my partner who is hard of hearing is figuring out how to navigate social environments with multiple people and how much of a role to play, like, in positioning myself or positioning other people, or telling other people what's going on. I'm curious about how the two of you navigate, have navigated that and what feels most comfortable.
Anna Pulley
Yes, that is a real struggle. And Vika has been wonderful about making sure that I feel included. She's so good at it too. It's like, she won't just repeat what the person says. She's kind of like — she kind of addresses me and like, frames the question in a way as if maybe I already heard it but she's just kind of reiterating the point. And that's — I was like, "Damn, that's good," like she is good. And she's — I think, partially this is from — I don't know if you wanted to talk about your grandmother and having to translate for her as a child.
Vika Mass
So my family is originally from the former Soviet Union. I was born in the U.S. And so for most of my childhood, it was just normal to be the translator for my grandmother, who never really learned English. And, you know, what really surprises me about this experience is it's very similar to when someone doesn't speak a language. And so having to serve as that translator, understanding the social situation, making sure that the person that you're with has the context that they need in order to respond or act. And it's uncanny how similar the experiences are.
Anita Rao
That's a really beautiful parallel, and I think, points to the fact that, you know, we put so much emphasis on hard of hearing folks to adjust to our speech environment. And there's really so little emphasis placed on, you know, more folks learning ASL, or finding other ways to, kind of, meet in the middle to have a conversation. So I love that example. I think that's really helpful. You mentioned, Anna, that you all have a lot of stories and tidbits about navigating this in the context of your intimate relationship. So I'd love to know a little bit about that and how you all have navigated that process.
Anna Pulley
The funniest story for me was pretty early on in our relationship, and Vika had come up behind me, she put her arms around me, very sweet. She whispered in my ear, "I want to taste you." And I turned around with a panicked look on my face, and I was like, "Test me in what? Like, I haven't studied, I don't know what's going on." And then she was like, "No, no, no, no, no." So we have this really funny like, oh, yeah, you can't whisper sweet nothings into my ear. I'm so sorry. I mean, you can, but like, I'm not gonna know what you said, so you're gonna have to look at me in the face to do that.
Anita Rao
That's an amazing story.
Vika Mass
And it took me a while to get brave enough to say it. I'm like, "Okay, I want to surprise her. I want to do something unexpected. It's going to be sexy. I'm not sure how she'll receive this." And then she turns around, and the look on her face of just this horror. I'm like, "What happened?" And then I realized she's like, "Test me in what?" I'm like, "No, no, I'm not testing you in anything." But not the response that I expected at all.
Anita Rao
Exactly, exactly. Didn't move into the mood that you were hoping it would in that moment. So you all, one of the things that I know Anna that you have done to help with communication in that environment is to make sure that the lights are on when you're having sex, which I know could be a transition for people who aren't used to always having sex with the lights on. Anna, have you all developed any other, I guess, ways of communicating that are not verbal, that have also helped in those situations?
Anna Pulley
Yeah, we do. We have codes, we tap each other. We, we know each other really well now. So you, you're much more tuned in to nonverbal cues. And that's something I think actually that hearing loss has really helped with. For me, you know, I have to position myself in a certain way so that when I'm performing cunnilingus that the hearing aids don't shriek horribly. Which is a real mood killer.
Anita Rao
Because yeah, they can, like, it can cause a lot of feedback if there is, like, pressure against it.
Anna Pulley
Yeah, so sometimes if you hug, like, and you have pressure, it's does that and the thighs are a great buffer for producing that sound if anyone's curious.
Anita Rao
So, as you all have been, I guess, navigating this, there's obviously a lot of humor and fun and play, and it seems like you all have a great sense of humor that you take it all with. But I'm guessing there also — maybe it can be other emotions, maybe frustration or difficulty when you don't feel understood, Anna or Vika you might lose patience. I'm curious about how you all have navigated those parts of it. The slightly less fun pieces. Maybe Vika let's start with you.
Vika Mass
You know, early on in our relationship, we were going to sleep and it was raining and the sound of rushing water was just really lovely. And I just made the comment, "Oh, it's starting to rain." And Anna didn't hear me. And I said, "Well, that's okay. No big deal. Forget it." And she got so upset with me. And the look on her face just dropped. And I'm like, "No, I was just making a comment about rain." And I didn't realize that, regardless of the comment, how insignificant it may have been — for her, she felt isolated, she felt that I wasn't — I didn't make an effort to ensure that she understood me, even though it was something so small. You know, and I think that was kind of my first understanding about how emotional this can be and how potentially isolating it can be, you know, regardless of how small the statement is. So it's really not just about content, it's about making sure that you're connecting and communicating, and that you have that. It was quite shocking. I was, of course, was very upset, because I did not want to upset her. And it was a real lesson learned for me about "Wow, there's a lot of sensitivity here that I just wasn't aware of."
Anita Rao
Oh, yeah. And that's really beautifully said. And I know Anna, that's something you've reflected on a lot of your essays how it is, you know, it's not just about the words that are said, but it's about the relationship that forms because of those words, and how that leads to intimacy. And when that feels ruptured, or broken, it can be really hurtful.
Anna Pulley
Absolutely, yes, it's — hearing loss is very lonely. That's probably one of the biggest things, that's been the hardest to accept. There's just, there's a lot that I'm not gonna catch. There's a lot that I'm not going to be a part of. And when you see everyone around you laughing at a joke that you didn't hear, or, you know, whispering about gossip that you didn't catch, it can be so lonely. And just, really, those days are the hardest, for sure. And now, so Vika has two kids. And I'm around them all the time, obviously. And I really am struggling to hear them a lot of the time too. And I just feel like, "Oh, man, this is, this is such a challenge." And I'm really hard on myself about it and Vika so sweet. She usually tells me what happens afterwards. Or in some cases, you know, she's like, "Oh, don't worry, like, Gregory was just talking about Pokemon characters. Like, those aren't real words, like, you're not missing — like, a charmander is not a real thing." So she's been really great and instrumental in me not feeling left out. And I appreciate that so much.
Anita Rao
Vika, how have you been, kind of, teaching your kids to communicate more clearly or better? And like, are they able to make these adjustments in real time? What's that been like?
Vika Mass
Well, I've been trying to get in the habit of when I speak to my kids to look at them directly. So they get into the habit of when you want to say something, make sure there's eye contact, make sure that you're in front of the person, you know. But kids have this thing where they'll start talking and running away from you at the same time, and you're like, "Hold on a minute, hold on, come back, stand in front of me or stand in front of Anna, she can't hear you." And so just really trying to build that awareness. But kids are kids. So some days, it's easier, some days, not so much.
Anita Rao
Well, I would love to end, because Anna I know that you are a pro at giving advice, you actually do it for a job. So I'm gonna, I'm gonna get you to give some on the spot advice, which is for folks who are in interabled partnership, what advice do you have for thinking about communication and making modifications, maybe toward the beginning, as you're just beginning to get to know each other and then feeling some of that discomfort about disclosure or what the person may think or feel or how they may react?
Anna Pulley
I would definitely advise people to take it slowly. You know, it's a muscle that you learn, adapting to people who have different needs than you. It's not something that we, that we know intuitively, because we've been in a world that's hearing and, you know, or ablebodied, and so we're — it's not at the forefront of our mind. So be gentle with each other. If your partner makes a request, don't make them feel bad about it. You know, roll with it as much as you can. You're also — you're allowed to be frustrated. You're, like the partner who's ablebodied, you're allowed to be frustrated, you're allowed to be annoyed by it, because those feelings are real, and they're valid and, you know, so being patient, being as compassionate as you can, finding workarounds. There are remarkable workarounds now, not even just with technology, but, you know, obviously, there's learning signed communication, there's lip reading, there's all this stuff. And it's just getting better and more accessible, which is lovely.
The other big thing is have a sense of humor about it. I started writing down those adventures in deafness because I, on the days when I'm feeling so disheartened by my hearing loss, I look back at those and I'm like, "Okay, yeah, there's still some moments where I can find joy in this," and it still makes me laugh. Like I remember Vika, we were first getting together and I, I lost my hearing aid somehow during our hookup, and we're just turning the room upside down looking for it. And then as we went to say goodbye, I pulled in for a kiss and realized that the hearing aid was in her hair. So those moments, those moments get you through. And so yes, be gentle with yourselves, be gentle with each other, like, it's a learning process, you're not going to get it right the first time or the 100th time.
Anita Rao
Anna Pulley is an advice columnist and the author of the "Love Where You Work" series. Vika Mass is her fiancee. Anna, Vika, thank you both so much for talking with us.
Vika Mass
Thank you.
Anna Pulley
Thank you.
Anita Rao
Just ahead, we're going to talk about what a journey with hearing aids can mean for your relationship with your parents. You're listening to Embodied from North Carolina Public Radio, a broadcast service of the University of North Carolina at Chapel Hill. Please stay with us.
This is Embodied. I'm Anita Rao. Starting a journey with hearing aids means considering questions about cost, weighing the pros and cons of visible devices and preparing for the unknown. But when kids experience hearing loss at a young age, many of these earliest decisions are made by their parents.
Elie Gardner
My name is Elie, and I live in Norway with my husband and almost 2-year-old son. My son has used hearing aids since he was about two and a half months old. When he first got his hearing aids, I remember it was such a struggle to keep them on. The day he got his hearing aids, my husband and I managed to lose one of them in the hallway on our way out the door. While it was practically hard to keep the hearing aids in place, it was emotionally even harder to know what was best for my son. When he was younger, sometimes he cried or resisted when we would try to put on his hearing aids. We didn't know whether we should trust him when he seemed to say no to the hearing aids, or the audiologists who emphasize the importance of giving him as much access to sound as possible if we wanted him to speak. We learned about other ways that we could help our son too. Keep the room well that talk one at a time. Keep tall things off the center of the table at mealtime. As I reflect on how hearing aids may have affected my relationship with my son, I realize that I make talk to him more when he has his hearing aids on. I wonder if this comes from my own desire to be heard. Earlier, when there was so much uncertainty around what my son could hear or not hear, we started exploring other ways to communicate, primarily through sign language, gestures and facial expressions. So while I may talk to my son more when his hearing aids are on, I don't stop communicating with him when they are not.
Anita Rao
You just heard from Elie Gardner. Thinking about how our families and cultures shape our understanding of hearing loss is the work of communication accessibility advocate Yat Li. Yat's hearing loss is a result of microtia, a condition that meant his outer ears weren't fully developed when he was born. We first talked to Yat a few years ago about Deaf representation in the movie "Sound of Metal." Yat is also an inclusive model and the creator of the YouTube channel "Let There Be Ears." Yat, welcome back to Embodied.
Yat Li
Hi, Anita, it's such a pleasure to be back here again today.
Anita Rao
So you were born with a condition called microtia, which affects both the physical form of your ears as well as your hearing. So tell me a bit more about that and your experience of sound in the early years of your life.
Yat Li
Microtia is a congenital condition where my outer ears are underdeveloped. And normally it affects you know, the one side of the ear. But for me it was bilateral microtia, so both sides of my ears were underdeveloped. And they were quite tiny, around the size of an ear lobe. So, you know, sound was always covered by my skin that covered the ear lobe. The structures of the ear, inner ears were kind of in place, except there's no canal coming through. So I couldn't hear sound as well as a hearing person would be able to.
Anita Rao
So you were born in Hong Kong and you were raised speaking both English and Cantonese. I'm curious about how your cultural context shaped your experience of hearing loss.
Yat Li
Thank you for asking that question. You know, culturally, it was really difficult for me as a child born in Hong Kong, in an Asian country back in the late 80s and early 90s. Growing up, I always attached disability to shame and to guilt. And the reason I felt that was because of the area I grew up in, and the lack of understanding of inclusion at the time, in Asia and even in Hong Kong. So my family had, you know, thought of the idea, "Hey, let's move over to another country, perhaps there may be better education. There may be better — an opportunity for me to grow up." So we moved to a place called Vancouver out in British Columbia in Canada. And that's where I grew up. And it was a challenge to be honest, because I didn't speak English, I didn't speak my mother tongue, Cantonese. So it was really hard, especially for a person who couldn't hear.
Anita Rao
So growing up, before age 5, you had kind of hearing aids that were strapped on to you that you wore with, like, an elastic band. And once you moved to Canada, you had a surgery where you got bone-anchored hearing aids. So talk to me about that adjustment process, and how that shaped your experience of hearing.
Yat Li
You know, while the headband was good — it provided me with elements of hearing that I otherwise wouldn't have — it was a very much of a visual distraction for myself and for others, which meant making friends and being on the spotlight a bit more, especially when I was a child and still developing my self-confidence and self-esteem. So that was very challenging. And hearing wasn't really good because the headband would conduce hearing through a device and then through my skin and then through my bone and into my my head. So there were several layers before a sound could be traveled into my head so I could hear. The bone-anchored surgery really allowed me to hear exponentially better. But it was a real big process, because — not only because of the surgery, but also relearning what hearing is. I remember when I was first activated with the bone-anchored hearing device, we were at a restaurant. And I was like, "Hey, Dad, what's all this like, clanging, and what's all these, like, sound of light wind or whatever it is." I don't — I couldn't comprehend, because it was so much information in my head that I've never heard before. So he was like, "Son, this is the dishes clanging at each other. These are the wind, these are the leaves rustling." And I'm like, "Oh, okay, I guess I hear a lot of annoying sounds now." So, yeah.
Anita Rao
You were hearing sounds that you hadn't heard before, and your brain was making sense of them. And as we've been talking about this hour, it can take a long time for your brain to make sense of these new sounds. So parents play a big role in this early process for helping their young kids develop. And we actually heard from an audiologist, Michelle Hu, talking about the experience of kids adjusting to hearing aids. So let's listen to Michelle.
Dr. Michelle Hu
I encourage families to allow their children to choose the color of their hearing aids or their earmolds. The reason being is the kids are the individuals who will be utilizing them. How parents view and think about their child's disability absolutely influences how children think of their disability. When we make it fun, when we encourage ownership and choice that this device is theirs and theirs alone, the outcome for use is significantly better.
Anita Rao
So that is audiologist Michelle Hu. Yat, I'm curious about how you describe your own parents' attitudes toward your hearing loss and your hearing aids in particular.
Yat Li
So you know, as I mentioned earlier, growing up in Asia and having Asian traditional parents, the parents instilled in me at the time that disability is somewhat of a shame and guilt. So I always hide it. And and that was always ingrained in my head that you know, whenever I step out of the house, whenever I put these hearing devices on, I am going to be someone else. I am going to be that John next door who is ablebodied, who has perfect hearing, I'm going to be like him. And I would always try to be and mimic someone else. Until the day when I was a little older and I recognize that this is really tiring. I'm not quite sure if I can do this anymore. And I hit a tipping slash breaking point where I recognize if I keep pretending to be someone else, if I keep trying to hide the fact that I wear prosthetic ears, I keep hiding the fact that I have hearing loss, no one is going to understand me. No one is going to trust me and no one is going to see the authentic Yat than I am. So I recognized that in my early 20s, and I recognized that you know what, maybe I should learn to self-disclose.
Anita Rao
So in the past four years or so you've started to be much more open about your hearing loss. You have a YouTube channel in which you talk openly about your story, you describe what microtia is, you describe the process of getting prosthetic ears fitted, and you talk a bit about how hearing loss shows up in your dating life and in your romantic relationships. Earlier in your life, you would hide it a lot. You had long hair, and you were always kind of covering your ears. And now you are a bit more open. So I'd love to maybe talk about your more recent experiences with your now wife, I believe. Talk to me about disclosure in that relationship and what that experience was like.
Yat Li
I wouldn't be able to have the same confidence I did disclosing my hearing loss with my wife, had I not learned to self-disclose a couple years ago. And whenever I talk about self-disclosure, it, it feels like I have to go back and peel off a little bit of a banding to a wound and to some of the trauma I've experienced as a child, being bullied and being othered, for example. So, I remember when I first met my now wife, Angela, I didn't tell her right off the bat. We went on several dates before I even had the inkling and the courage to speak to her about this. In fact, she even complimented how, how nice my ears look. So you know, that's a compliment to my anaplastologist who worked on my ears. It wasn't until I think the third or fourth date, when I remember I told her in the car. I was like, "Hey, Angela, there are things I need to tell you about, and it's about me. And I wear hearing aids, and I wear either prosthetics. And you may not see it, you may think it's a very beautiful ear, which I think so too. But they do come on and off." So, she she took it really gracefully, she understood. She at the time was starting to become an occupational therapist. So there was you know, direct correlation. And I, I really am really grateful that she was her health background, and me as a person with lived experience, are able to walk on this journey together.
Anita Rao
So we heard earlier from Anna and Vika about both the humor and the hardship of being an interabled couple, especially when it comes to hearing and hearing loss. And I'm curious about any particular stories that stand out to you, any particular sticky moments that you all have had to navigate around hearing loss.
Yat Li
I remember taking off my hearing aid with her while traveling the first time and learning to communicate. Especially after you know, you tidy up or perhaps you know, as you actually go sleep, you know, there's a element of communication. So as we heard, you know, earlier from Elie, you know, we can't stop communicating. And when I take off my hearing aids, and there are many moments during the day that I do. And my wife and I have developed a really interesting way to communicate. I'll sign with her. And she's learning a little bit of that. For me, it is really weird, I've discovered that when I'm with her and when she tries to put her lips by my, by my cheek and try to speak with me there I hear even better, as well too, without my hearing aids. So we have that form of communication, we have that form of expression. And it's really lovely. And it's very beautiful.
Anita Rao
You mentioned sign and I have heard that, you know, sign has this kind of poetry to it in a way, you know, the user can manipulate sign and have their own kind of language and personality through sign. I know that you signed, you said your wife is learning. How do you feel like that shapes how you express yourself, and is that different from how you may express yourself through speech.
Yat Li
Sign Language is another form of language and it's very beautiful. And it's just like, perhaps another person taking up another language, like Spanish. I currently am also learning to speak Mandarin as well too. Because my mother tongue is Mandarin. So I'm learning sign language. I'm learning Mandarin, I'm still improving on my Cantonese and of course, my native tongue English. And learning another language is beautiful, because there's many mistakes along the way. And she'll say, "Okay, well, what are you signing here? I'm trying to understand you," or she'll poke fun at me, I'll poke fun at her for making the wrong sign. And I think there's this expression, this learning and making mistakes together is something that is very, you know — it's bonding really. And it's really amazing to be able to share those forms of communication together, being Angela, my wife, a hearing person, and for myself being a deaf and hard of hearing person.
Anita Rao
So we've talked a little bit about shame and how that's been a part of your story and how you've moved through that and how you are increasingly vulnerable with your story in public forums. And I'm curious about what are some of the most surprising or notable shifts that you've seen in yourself since you started to be more visible in the disability community with your story.
Yat Li
Four years ago, Anita, if you had asked me whether I would even embark on a journey of self-disclosure, I'll tell you no. Not because I don't want to share but because I don't know the best way to talk about myself. I don't want to be a person whom is being seen as I'm always looking for help or attention. But going back to when I was younger, I was doing that. I was flamboyant. I was trying to explore different hairstyles, I was trying to explore different fashion. And I was trying to explore, you know, who my intersection is. And that's beautiful. And in doing so, I think that gave me a little bit of an opportunity to reflect on hey, you know what, I can really now narrow it down, what I want to be. And had I not done that when I was younger, I don't think I would have the courage to do so four years ago. I think the lightbulb moment was when I Googled hard of hearing young adults in Canada or in Vancouver or something. And then I learned about a group of different people who were hard of hearing, whom were nurses, doctors, lawyers and that was really amazing to see, hey, you know, people who also may have similar type of experience as myself, have gone on to these careers. Maybe I can be like that one day, or perhaps maybe I can learn some of their best practices. And they were really the conduit to me learning to see how they self-disclose, and how I can bring that to my life now. And of course, with the onset of COVID, yt gave me an opportunity to go on YouTube, to go on different social channels, to start sharing my story as a person with microtia, as a person with a disability.
Anita Rao
Well, thank you so much for talking with us again and sharing your story with Embodied. Yat Li is a communication accessibility advocate, inclusive model and the creator of the YouTube channel "Let There Be Ears." Yat, thank you so much.
Yat Li
Thank you, Anita.
Anita Rao
You can find more about everyone we talked to today at our website embodiedwunc.org. You can find all episodes of the Embodied radio show there, as well as check out our weekly podcast, a great way to catch up on anything you missed or learn something new on your commute.
We'd also love to hear your thoughts for an upcoming show we are doing on the wellness industry. What does wellness mean to you? How does that align with what you've seen marketed to you by companies? Leave us a message in our virtual voicemail. You can find a link on our website embodiedwunc.org or on our social media we're @embodiedWUNC.
Today's episode was produced by Audrey Smith and edited by Kaia Findlay. Amanda Magnus also edits our show. Madison Speyer is our intern and Jenni Lawson is our technical director.
North Carolina Public Radio is a broadcast service of the University of North Carolina at Chapel Hill. I'm Anita Rao.