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The world is built for people with perfect hearing — but 83% of people don't have it

An illustration of a woman listening to music on headphones
Maria Fabrizio
Special to NPR

Stephanie Gurley-Thomas could always tell that something was off with her hearing, but she didn’t know what.

“When I was 15, I had a staph infection in my ankle. We ended up having an ototoxic drug to clean it out,” she said. “Ototoxic means it's poisonous to your ear, basically.”

Her symptoms gradually worsened, but because she was quite young, she didn’t consider that hearing loss might be the culprit. Certain sounds seemed louder to her, not quieter; she couldn’t tell where sounds were coming from; people’s speech sounded garbled. It wasn’t just that the proverbial volume knob in her head was turned down — so Gurley-Thomas thought something else must be wrong.

In her mid-20s, Gurley-Thomas was diagnosed with asymmetrical hearing loss — a condition in which one ear has more severe loss than the other. It came as a shock, but she was relieved.

“It was not in my head. I wasn’t doing anything wrong. There was a name for what was happening,” she said. “It was hearing loss, and it was real.”

ASL translation of the podcast. Find the audio transcript at the end of this post.

Gurley-Thomas’ hearing loss, like most people’s, is complex and highly personal. That’s because sound is really the interpretation of external factors by the brain, like pressure and vibration.

“Hearing varies because our brains vary,” said Travis Threats, professor and chair of the department of speech, language and hearing sciences at St. Louis University. “People with so-called ‘normal hearing’ are still not perceiving things the same way. … There are a lot of subtleties of how we hear and how we're able to interpret sound.”

Threats added that the process of transforming those external factors into something the brain can understand is extremely complicated.

“The more steps you have in any process … there are more things that can go wrong,” he said. “But there are also more things that can shine.”

These subtle differences in our hearing, including how we perceive and interpret sound, is what Andrew Hugill calls aural diversity.

“Everybody hears differently,” said Hugill, who is a professor of music and creative computing at the University of Leicester in England. “There's an assumption that if you've got a hearing condition, it means you've lost some of your hearing … but actually, the reverse can be true. You can have more hearing — too much hearing.”

Hugill founded the Aural Diversity Project in 2018 and co-edited the 2021 book “Aural Diversity.

Aural diversity, he said, is informed by psychology, neurology, lived experience, physical makeup and more. While the field of study is gaining more recognition, it’s not a new concept.

“You [can] read historical accounts about people hearing things in a different way. The language they used to describe it is different, the technologies they had were different, but you can recognize some of the same problems,” he said.

According to the International Standards Organization, people ages 18 to 25 with no history of hearing conditions are considered to have “normal” hearing. This means that most people do not have “normal” hearing. That’s why Hugill pushes for better understanding of aural diversity. Being able to better communicate these differences has the potential to influence the way people in various fields approach listening, hearing and accessibility.

“I'm already seeing this happening,” Hugill said. “I was invited to chair a panel at Internoise, which is the enormous acoustics noise control conference, and this was really new to them.”

Tools to help people hear better are more widely available than ever before and they come from a broad array of fields. Many researchers involved with the Aural Diversity Project use their expertise to develop innovative solutions — like Angeliki Mourgela, an audio engineer and a doctoral student at Queen Mary University of London. She is developing a hearing loss simulator to help audio producers make modified versions of their content specifically for people with hearing loss.

The goal of the simulator is not to reflect a person’s hearing loss with total accuracy but to help represent the difficulty hearing loss poses. Mourgela hopes that it will be used as a tool to further hearing accessibility — and that it increases people’s empathy for those with hearing loss.

A woman in a kelly green shirt smiles at the camera.
Emily Woodbury
St. Louis Public Radio
Stephanie Gurley-Thomas is a community volunteer and activist.

Gurley-Thomas had the chance to experiment with the simulator — to hear a simulated version of what she experiences as someone with tinnitus and asymmetrical hearing loss. Like Mourgela, she hopes that it will help people better understand her experience.

“There's nothing more annoying to someone with hearing loss [as] when you say ‘Excuse me?’ or ‘Pardon me?’ or ‘What?’ and somebody else comes back with ‘Oh, never mind,’” she said. “It's dismissive. That what they said isn't important enough — you aren't important enough — to hear it again. It's not intended, we understand that. But then you immediately feel left out of the conversation. And it happens all the time.”

Gurley-Thomas has accepted that her hearing loss is permanent and that she’ll never be able to hear things clearly in a crowded restaurant. But she said that her hearing devices do make her hearing experience less difficult. She hopes that by sharing her story, people will be inspired to have regular hearing tests.

“There are people with hearing loss that can get help and benefit from that help,” she said. “If I can help anybody advocate for themselves in a stronger way, or help them decide to go get a hearing test. … That's what I want.”

Get a sense of how Stephanie Gurley-Thomas hears the world (via Angeliki’s simulator) and learn more about the growing field of aural diversity by listening to St. Louis on the Air on Apple Podcast, Spotify, Google Podcast, Stitcher, or by clicking the play button below.

St. Louis on the Air special feature on "aural diversity"

Do you have a story to share about the way you perceive sound? Tweet us (@STLonAir), send an email to talk@stlpr.org or arogers@stlpr.org share your thoughts via our St. Louis on the Air Facebook group, and help inform our coverage.

St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is produced by Miya Norfleet, Emily Woodbury, Danny Wicentowski, Elaine Cha and Alex Heuer. Avery Rogers is our production assistant. The audio engineer is Aaron Doerr. Send questions and comments about this story to talk@stlpr.org

Aural Diversity Transcript

Elaine Cha: If a tree falls in a forest, and nobody is around to hear it, does it even make a sound? Well, yes — and no. The fall will cause the air to vibrate and create a sound wave, but what we tend to refer to as ‘sound’ is something that happens in the brain.

If nobody is there to listen when a tree falls, the sound waves it makes are only vibrations in the air. With more on the sense of hearing, and how it varies from person to person, here's producer Avery Rogers.

Avery Rogers: While our brains have similar ways of processing sensory information, such as waves of light or sound, our perceptions are very different. Andrew Hugill calls this Aural Diversity. He is a composer, performer, and professor of creative computing and music at the University of Leicester in England. He also co-founded the Aural Diversity project, in part as a way to understand more about himself, and why he perceives the world the way he does.

Andrew Hugill: In 2007 I was diagnosed with Ménière's disease, which is a balance disorder that also affects your hearing. I had a pretty severe case of it, and so it got to the point where I could barely walk. And then I had some treatment on the inner ear, which was a fairly violent chemical injection, which destroyed my balance function. So that relieved the vertigo.

Rogers: Professor Hugill’s hearing changed dramatically after that treatment. He now has tinnitus, which he describes as a permanent "whooshing" sound in his ears, as well as severe hearing loss in both ears, with one ear worse than the other. He also has a peculiar condition called diplacusis.

Hugill: That's where you hear two different pitches between the two ears. You know, you play a note on a piano [Improv 7] and I hear two different notes, one of which is out of tune with the other. [Improv 7] Each note has a duration, and that duration involves the interplay of these de-tunings. [Improv 7] For a musician, this is very disturbing. [Improv 7] All the things that I really valued, like music, I wasn't able to listen to it anymore. [Improv 7] To say you’ve got something wrong with your hearing, it can be very professionally damaging. [Improv 7] So I actually kept it a secret for the best part of a decade. [Improv 7] So it would have been easy to kind of give up really, [Improv 7] but I was determined to make it into a positive thing somehow. [Improv 7] And it dawned on me one day that I could actually replicate this. [Improv 7] What I tried to do then was to [Improv 7] build a digital instrument that reproduced this experience.

Rogers: Professor Hugill calls it the “Diplacusis Piano”. He wrote this song, “Addled Mystic” for it. [Addled Mystic] You can hear how the detuned notes clash with one another, [Addled Mystic] and how the dissonance builds upon itself over time. [Addled Mystic] He performed Addled Mystic and other Diplacusis Piano compositions at an Aural Diversity Project concert.

Hugill: Aural diversity is really a very simple idea on one level, and that is that everybody hears differently. Now you would think that this would be a very simple and obvious thing. But actually, when you come to look at all our fields and disciplines that relate to hearing in some way, what you find is that none of them seem to think about this. They all accept the idea of a sort of perfectly balanced pair of ears, that everybody shares the same hearing experience. And so, you know, when you think about the way acoustics works, the way design happens, architecture, technology, you name it — they all seem to be founded on this sort of tacit assumption that everybody hears the same way.

Rogers: The Aural Diversity Project, based out of the UK, is a network of researchers and artists who explore hearing differences in humans — and the consequences these differences have in our society.

Hugill: Anybody who's autistic — and I’m autistic, as well — will be familiar with the phrase ‘neurotypical,’ which is the idea that there's a common, or a sort of, dominant, neurological type. And then if you're autistic, you will be neurodivergent, or neuro atypical, some people say. And the whole field is neurodiversity. Aural diversity is really the same thing. It's just taking the concept of aurality — hearing — and making the point that there's many different ways of hearing.

Rogers:  Despite there being such diversity in how we perceive the world, society has been designed to cater, auditorily, to a select few, says Travis Threats. He’s a professor and chair of the Department of Speech, Language and Hearing Sciences at St. Louis University.

Travis Threats: We have a problem in this country with normal. And somewhere, people decided that people in their 20s are normal. So that becomes the standard, and that's not a good thing.

Rogers: The International Standards Organization defines people with quote-on-quote “normal” hearing to be between the ages of 18 and 25 with no hearing difficulties. According to Professor Hugill, that means only 17% of the population has normal hearing. Many industries use these standards to determine how things are made. Music and performance industries use them to build equipment, concert venues, speakers, and more. Architects use them to design their spaces.

Threats: So first let's start off with, let's get rid of, ‘25 is somehow the ultimate of life.’ But, but anyway, I say that only because it's not good for anyone. Rooms, classrooms that have too much reverberation are not good for any of the children's learning. And some school districts have put in something soft on the walls, things that keep that echoing from happening, and they find that test scores and reading scores go up. Hospitals are very loud, intrusive environments, especially considering that people are giving you advice on your medications in the emergency room.

Rogers: Another problem, Professor Threats says, is that we add a lot of noise to our environments, which contributes to hearing loss.

Threats: People in their 20s have started showing hearing loss because they're playing this music so loud in their ears. But part of even that is they're around such loud sounds. So that's why they're turning the music up because we live in such a noisy, challenging environment, more so than has usually been, in the history of mankind.

Rogers: Although the world is not built for the 83% of people who don’t live with perfect hearing, Professor Threats says there’s a growing movement around accessibility:

Threats: It's part of universal design: lets make everything easier for everyone. So bus schedules that are in too small of a print are harder for older people to use, even though they're the most likely to need public transportation because they're no longer driving. But those things, even when you have normal vision, are hard to read. It's hard to figure out the bus schedule, okay? It's hard for everybody. That's my point. So many things are hard for everybody, and we should just try to make things better not just for this group of people who have disabilities, but those changes turn out to be better for everybody.

Rogers: When people understand how they hear the world, they can better communicate their needs and accommodate the needs of others. And hearing, Professor Threats adds, is such a personal experience because sound happens in the brain.

Threats: Hearing varies because our brains vary. Even people with so-called normal hearing, we are still not perceiving things the same way. People have different preferences in music. It's probably actually coming into their brain differently, which is why some music that is very enjoyable is almost painful to other people, you know. They say, ‘I don't know how anyone can listen to that.’ That's because again, it's attached to a brain, it's attached to our structure.

Rogers: This also means there are ways in which people’s hearing can be enhanced — for better or for worse.

Threats: Each of us has different strengths in our hearing, on the things that we can pick up. So a person who might be tone deaf, as in music wise can't tell when things are out of tone, could also be somebody who can pick up subtleties in somebody's voice. A good therapist can hear hesitation in somebody's voice that another person can't hear. Okay, so we need to not just think about pathology. So, it's not an all or none thing – either you have good hearing or your bad hearing.

Rogers: It is common for autistic people to be more sensitive to certain stimuli, and this often includes sound. Professor Hugill says that many aspects of his hearing are enhanced because he is autistic.

Hugill: I’m one of these people, I mean, there are many of us now, who have been diagnosed autistic very late in life. I was diagnosed age 60. And so you look back and you think, ‘Oh, now a lot of things make sense to me now. I understand why it was that way.’ And when it comes to hearing, I always had a kind of autistic ability to listen to detail that other people missed, I think. So, I'd like, hear electricity and lighting. I used to sit and sit with my head in fridges, and try and notate the sounds that I heard in the fridge. And I'd also sit by the edge of roads, busy roads, and try and notate the sound of the traffic. So it's only later in life that I began to realize that actually, nobody was hearing what I was hearing, you know. And now I find myself looking back rather fondly on this and thinking, ‘Well, actually, you know, had I realized what I know now about aural diversity then, I would have been much more interested in these phenomena and trying to understand what was going on.’ But of course, you know, you didn't do that in those days. I mean, autism was very unusual when I was growing up. It's now much better understood, I think, although we've still got a long way to go. But, I think people now understand that there are these differences. And they're sensory, but they're also, you know, it's to do with brain processing, as well.

Rogers: Sometimes enhanced hearing can be really useful — but other times, like with misophonia, it can be extremely upsetting.

Cris Edwards: Misophonia is a neuro psychological condition that is best known as an auditory aversion, but it also frequently has visual elements. It is a legitimate disorder that is often misunderstood and misinterpreted.

Rogers: That is Cris Edwards. He founded So Quiet: a nonprofit in St. Louis that helps people who are affected by misophonia, which is a sensory condition that causes involuntary, often very uncomfortable sensations in reaction to certain stimuli — usually sounds, but sometimes visual stimuli as well. Some common misophonia triggers are the sound of chewing or slurping. Some less common triggers include the sounds of footsteps, the motion of someone else fidgeting, or even the way someone holds a spoon. The triggering stimuli as well as their accompanying sensations are different for everyone, and can cause extreme emotional and mental distress for the person experiencing it. For some people, certain triggers can even cause physical pain. Understandably, Chris says misophonia can be extremely hard to manage.

Edwards: I could be at the grocery store, and then there's somebody two aisles away who's popping their gum, and as soon as they start doing that, I get this — it's a weird combination of a panic, with an element of anger, and a need to just leave. To get away from that sound, immediately. There's times when I just can't be around another person because of something they're doing. And it's not that I want to, or don't want to, it's just that I can't. And it's affected friendships, it's affected professional relationships. I've walked out of jobs. I walked out one day and didn't go back because of a misophonia trigger that was just too much for me. And it doesn't make sense, you know. There's nothing threatening about those sounds, but our brains are misinterpreting it.

Rogers: It is a complicated condition that is hard to understand, even for people who have it. And that can make it really hard for people to talk about it with others.

Edwards: We sometimes have to ask people to not do something, if they want us to be around, and so that's a lot to ask. It sounds crazy if you tell somebody ‘I can't listen to that sound, it is driving me crazy.’ And everybody else is like ‘What? I don't even hear it!’ You know? It sounds crazy. But I think there's a meeting in the middle. I've had to realize that there's just a lot of things I can't change. But there's a meeting in the middle somewhere, and we understand it's not easy to understand, to wrap your head around what we’re experiencing and how it affects us. But, just to accept that, what somebody says about their personal experience, even if you can't relate to it, just accept it as factual that they're experiencing the world differently. [Limits of Hearing]

Rogers: When it comes to hearing and perception, the expression “correlation does not equal causation” is particularly relevant. People often have multiple, simultaneous conditions, but that does not mean they cause one another. A common example is that hearing loss often co-occurs with tinnitus — the permanent noise in the ears — but hearing loss and tinnitus can exist independently. According to the Cleveland Clinic, tinnitus affects about 50 million people in the United States. And it’s different for everyone. Some people describe it as a constant “whooshing” sound in their ears, like hearing the ocean, but way more annoying. Other people experience more of a high pitched ringing in their ears. And it can change over time. For some people, it even goes away. Sometimes it comes up randomly, and other times there is a clear cause, like certain medications. Sheryll Williams of O’Fallon in north St. Louis did not have hearing loss when she first developed tinnitus.

Sheryll Williams: I had a history of having the tinnitus in one ear or the other. That was during college. And it would be higher pitched, or clearly discernible in one ear, but not the other. And I kind of just realized that that was a way my body was responding to the stress. And after finals, I was good. So, it took me a long, long time to realize that the constant sound in my head and my brain was not normal. I did not realize it until one day I was having a conversation with my husband. And I said, ‘Do you hear that?’ He said, ‘What?’ and I explained what the sound is to me and it's a constant *beeep*. And he said, ‘No, I don’t hear that.’

Rogers: Decades after she first noticed her tinnitus in college, Sheryll was diagnosed with hearing loss, that includes sensitivity to certain sounds.

Williams: It turned out to be with the kind of hearing loss that I have, women's voices is where my hearing loss is and has remained. I eventually got hearing aids in 2008, and found out what I had been missing. It sounds as though to me that sounds are louder than they actually are. So when I am hearing a dog barking in the background of a phone call, or even an ambulance or fire truck siren, I can perceive that as being right out my door, because it sounds that close. And I can hear that sound better than the speech of the person on the phone.

Rogers: While doctors don’t always know what causes tinnitus, they can occasionally pinpoint the cause, or at least the kind, of hearing loss someone has. Professor Travis Threats, of the Department of Speech, Language and Hearing Sciences at St. Louis University, says exposure to loud noises is a common cause of hearing loss.

Threats: There's hair cells in your ear, and every time you hear a sound, the hair cells move up and down in a, kind of, fluid. If something's very loud, it slams the hair cell down. Think about a carpet. If you stamp on carpet, over and over again, on one given path, that path is going to be worn down. If you go on grass and everybody doesn't go on the sidewalks, but walks down that, the grass gets worn down. That's what’s mechanically happening to your ear over time with noise, and that’s a cause of hearing loss. And it'll be specific. So if you're listening to music, it's going to be the frequencies that you are listening at that are going to be damaged. It won't damage the hearing necessarily equally, but on the type of sound that you're hearing.

Rogers: Similar to Sheryll, St. Louis resident Stephanie Gurley-Thomas has tinnitus and hearing loss. The cause of that loss, however, remains a mystery.

Stephanie Gurley: My situation is not typical. It is very atypical. I do wear a hearing aid in my left ear, and I wear a cochlear implant in my right ear.

Rogers: Stephanie was diagnosed with asymmetrical hearing loss — which means that one side is worse than the other. It started in her twenties.

Gurley: When I was 15, I had a staph infection in my ankle, but we didn't know what it was at the time. And so we ended up having an ototoxic drug to clean it out, it's gentamicin, and ototoxic just means it's poisonous to your ear, basically.

Rogers: Stephanie’s hearing loss might have been caused by the drug, she says, but it is also possible that her genetics played a part, too. As her hearing loss worsened, her audiologist suggested getting a cochlear implant. Whereas a hearing aid amplifies sound and plays it through a tiny speaker by your ear, a cochlear implant directly stimulates the auditory nerve so it can send sound signals to your brain. Electrodes are surgically inserted into your cochlea and receive signals from a receiver/transmitter that is implanted under your skin. The receiver gets input from a sound processor that is placed behind your ear. Until this point, Stephanie had only used hearing aids, so this was a drastic change — and she wasn’t so sure about it.

Gurley: You know, I had a lot of concerns about it, of course, like anyone would when they're messing with your head and your ears and so forth.

Rogers: But something Stephanie’s audiologist said encouraged her to get the cochlear implant anyway.

Gurley: She said, ‘Stephanie, at the end of the day, you are more tired, and more exhausted than anybody else because of how hard you have to work to listen.’ And that really struck me because… I do. When you have hearing loss, you… you're not writing out a grocery list and listening to your husband, you aren't finishing up a quick email while you have a colleague trying to talk to you, actively listening is stopping what you're doing and focusing your full attention on that person and what they're saying. It's not just the sound, it's everything. The light, how you know how bright the light is, how well I can see your lips, the sounds that are coming in, the sounds that are in the background, every gesture you make, every facial expression you make, it all is part of that. And how do you measure that? That's, that’s very difficult.

Rogers: Stephanie says that it was hard to come to terms with her hearing loss, but eventually she had to accept that she would never really understand why it happened. And since it happened gradually and started early, a lot of people in her life did not realize what she was experiencing, and were insensitive about it.

Gurley: I did a semester in London during college and my friends jokingly called me ‘Deafanie’. So I definitely know there was something going on at that point. And yes, I saw your face when I said that. You get used to it to a degree. To a degree. I don't know how many deaf jokes I've heard over my lifetime. A lot of people they know you can't hear and then they'll say ‘What?’ And they think that's funny. But in my head, they say, ‘Oh, what?’ And then I have to think, ‘Wait, why are they saying what?’ And then it takes me a minute to realize they're making a joke, but they don't realize that in my head, I'm having to think ‘Wait, did I miss something? Hang on this, let me, let me try to reprogram what just happened and figure it out.’

Rogers: Stephanie says her diagnosis was a huge relief — because so many things in her life, including why she was being made fun of, started to make sense.

Gurley: It was not in my head. I was not doing anything wrong. I was not flighty and not paying attention. I, there was a name for what was happening. And it was hearing loss and it was real. And one of the first things I did was call an ex boyfriend and say ‘Ha! It's not selective hearing!’ Because that's what he always used to say. He would say, ‘Well, when I say something to you, you pause and then you get it.’ Well, that's context! I get some things, I just don't get everything. With my loss, I have loss with the soft consonants, which would be like SH, CH, TH, that sort of thing. So I can pick up what you're saying, but it takes me a minute to catch on. And if we're talking or especially in a group situation, you've already moved on by the time I get what you said, if I get what you said. There's nothing more annoying to someone with hearing loss when you say ‘Excuse me?’ or ‘Pardon me?’ or ‘What?’ and somebody else comes back with ‘Oh, nevermind.’ It's dismissive. That what they said isn't important enough — you aren't important enough to hear it again. It's not intended, we understand that. But then you immediately feel left out of the conversation. And it happens all the time.

Rogers: Stephanie appreciates that her close friends and family make the extra effort to ensure she is comfortable, especially in a social situation. Stephanie’s friends get her input before they make plans to go out, in case something about the building might make her hearing experience more difficult, like if the restaurant has high ceilings. Stephanie’s husband asks her to pick her seat around the table first so that she can get the best advantages for her hearing. They intentionally create space for Stephanie to voice her needs, and then they do what they can to meet those needs. They don’t assume they know what her needs are.

Gurley: Some people are just, you know, so helpful about it, but then some aren't. It's interesting. They… they think you do okay. They think ‘But she can hear in this situation, why can't she hear in that?’ And that's again, because hearing loss isn't just, ‘I've lost XYZ.’ it's, ‘I've lost x at this level, but z at this level, and this other ear does that,’ and you know, it's, it's very nuanced. It's complicated. Nobody with hearing loss can put a device on and hear what you hear. Ever. That just doesn't exist. It's not like glasses that are corrective. Nothing corrects your hearing loss.   

Rogers: Hearing aids can only help so much. Stephanie also doesn’t get the full benefit of her cochlear implant, and that too, is a mystery to her audiologists. But still, Stephanie says that the devices have changed her life for the better. She says it is really important to go see someone right away if you notice a change in your hearing, because the earlier you can get help, usually, the better your treatment will work. And the earlier you start using the accessibility tools you need, your hearing experience could become less stressful much sooner. Tools to help people hear better are more widely available today and they come from a broad array of fields. Many researchers involved with the Aural Diversity Project use their expertise to develop innovative solutions — like Angeliki Mourgela, an audio engineer and a doctoral student at Queen Mary University in the UK. She is working on a program to help audio producers make modified versions of their content specifically for people with hearing loss.

Angeliki Mourgela: If we are able to provide additional content, it will be much much easier for the viewer to select whether they want the enhanced version or the version that's available for the general public. Even if it means that it's not entirely personalized, I think it would be much more accessible than having that responsibility on the viewer to buy the equipment or to modify their listening setup, and so on.

Rogers: Angeliki’s goal is to create a tool that automates the whole process — so that it’s easy for audio producers, such as music producers and podcasters, to make their audio more widely available to consumers. To do that, she says there needs to be some sort of reference material. Because, if audio producers are to make versions of their audio for people with hearing loss, how are they supposed to know what works and what doesn't? How would they know if the version for people with hearing loss actually does more closely resemble the original version? Her solution was to first build an audio plugin of a hearing loss simulator.

Mourgela: We wanted engineers, first of all, to get the awareness of how their content would sound to somebody that had hearing loss or what difficulties would present and what they could do to counteract those difficulties. And then we wanted it to be something very easily, kind of, shared with the public so that everyone can try it and hear for themselves. The simulation, in a sense, it, we can't really say if it's accurately replicating hearing loss because just like normal hearing, hearing loss can vary as well. Not one person will have the same hearing loss as the other person, even if they, their measurements present to be exactly the same.

Rogers: When Stephanie learned about Angeliki’s work, she said she was curious how well the simulator could demonstrate her difficulty hearing.

Gurley: If I can help anybody advocate for themselves in a stronger way, or help them decide to go get a hearing test, or help them decide to get their in law or mother or child a hearing test. That's what I want.

Rogers: Using Angeliki’s plugin as well as some sound design choices, here are some examples of what Stephanie might hear in different settings and situations.

Gurley: You know, I love, I love the music from the 80s. [Sunday Bloody Sunday] I’ve always wondered how much of music I'm actually hearing. [Sunday Bloody Sunday] A long time ago I would get the cassette tape out and I would pull out the insert and read the lyrics. [Sunday Bloody Sunday] Thats how I would get into the music. [Sunday Bloody Sunday] I always hear the beat. [Sunday Bloody Sunday, louder beat] But I did not hear cymbals, some snare, things like that. [Sunday Bloody Sunday, cymbals and snare out] I have good hearing in my lows, [Sunday Bloody Sunday, enhanced lows] and then it quickly tapers off [Sunday Bloody Sunday, high frequencies out] The volume is decreased for sure in both ears, [Sunday Bloody Sunday, decreased volume R then L] and I've actually lost some of the frequencies that are at the high end altogether. [Sunday Bloody Sunday, more highs out] They can't be replicated. But that’s just a part of creating my whole hearing experience. [Sunday Bloody Sunday, full loss] So it's hard to know what you're missing when you never knew you were missing it. [Sunday Bloody Sunday original] [Sunday Bloody Sunday, full loss] I have to believe I had early onset tinnitus, because I’m rather type A and I think I would have lost my mind. What I hear right now is, let me think, So I have a constant high pitched ring, [tone] it's just a constant one note. [tone] Then there are random beeps and chirps under that, that have no rhyme or reason. [tone, beeps, chirps] And then another sort of layer of beeping and ringing. [tonex2, beepsx2, chirps] It's very hard to explain. When I was younger, I remember people would talk about, we, my family had a place at the lake. [Nature sounds, birds] Cicadas would come out every seven or 13 years and I'm always like, ‘Well, I hear cicadas all the time.’ [Nature sounds, add cicadas] So I don't, you know, maybe they're wrong or what you know, I didn't put two and two together that you know, when I'm at the lake and hearing the cicadas, [add full tinnitus sounds, nature sounds fade out] why am I also hearing them back home and at my family’s house, you know in town, in the bathroom? Something's, you know, not making sense there. So I think it's always been there. And it is frustrating because it's never quiet. [Full tinnitus, louder, then out] Cochlears work really well with people who had hearing and then lost it, because the brain will remember. Cochlear, the coil stimulates those nerves, and then they can hear again, but sometimes it takes a while for it to sound natural. [Bird sounds] So we kept thinking that mine would become natural sounding and it just never did. You know, I heard birds again, after I got mine. [Bird sounds] They don't sound right. They sound a little tinny, like old time radio, like tinny. [Bird sounds changed] I’m right here with you one on one. We can’t hear anything else. I'm having no trouble hearing you. Whenever you have a group of people and any kind of background noise, [coffee shop sounds] it's kind of a game over situation. [Voice starts to sound increasingly garbled] With or without my hearing devices on, [add tinnitus] it often sounds like they're mumbling. Like, they're just not speaking crisply, they're not enunciating. [Progressively harder to hear] They're just kind of talking a little bit like this. I imagine it sounds like you know, maybe a partially a person who's been drinking a little bit or something like that. It's just not crisp. And if they are a natural mumbler, whew! You know, that's a hard one. It's not just it's not just that when you look at my audiogram it shows I have, I hear 38% In one ear, what am I hearing? What is that 38% that I'm catching? And nobody really knows. So it's, it's greater than just getting a hearing test and getting a device. [tinnitus and coffee shop sounds fade up then out] I think at the end of the day, you cannot replicate it. It's different for everybody. I think teaching people that it's different. Just that piece is important. 

Rogers: Stephanie says that hearing differences can affect the choices and trajectory of your career. It can put strain on relationships with families and friends. It can change personalities. People withdraw from many situations because of the anxiety they feel with asking for help or accommodations — so not only do they not get the help they want and need, but their social experience and mental health is severely affected. So ask yourself — what is my hearing experience like? How would I describe it? How would I visualize it? How can I appreciate it? How has it changed over time? And ask these questions not to diagnose or pathologize yourself — but to appreciate this aspect of who you are. To more deeply understand the lens through which you perceive the world. To contemplate this part of your human experience. Because it is unique. So next time someone with hearing loss asks you to repeat yourself, respond with compassion and curiosity. Face them when you speak so they can read your lips. Ask your friends and family if there is something you can do to make their experience less difficult. Cultivate an environment around you where people’s experiences are understood to be inherently valid, no matter your preconception of what “should” or should not be true, no matter what your idea of “normal” is. [Stephanie’s Sunday Bloody Sunday]

Correction: Professor Andrew Hugill works at the University of Leicester. A previous St. Louis Public Radio report listed the incorrect university.

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Avery is the Production Assistant for "St. Louis On The Air" at St. Louis Public Radio.
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