Deaf Gain

Original Art by  Michael Zhang .

Original Art by Michael Zhang.

This episode was written and produced by Leila Battison.

The last few decades have seen amazing improvements in cochlear implant technology. Professor Michael Dorman reveals what they really sound like, and how they can help out with more than just our hearing. But should we be advocating cochlear implants at all? We chat with deaf graphic designer Brandon Edquist about why he chooses not to use his implant, and why the Deaf community is up in arms against them.


A Better World by Instrumental by CHPTRS
Maggie and Bernard by Steven Gutheinz
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Drops by Sunshine Recorder
Greylock (with Kyle McEvoy) by Sunshine Recorder
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Bokeh by Luke Atencio
Gaze by Chad Lawson
Reflects Dans l'Eau by SVVN
Lotus by Longlake

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View Transcript ▶︎

[music in]

You're listening to Twenty Thousand Hertz... I'm Dallas Taylor.

Our hearing is one of our core senses, and it’s something most of us take for granted.

The laughter of a child [SFX], birdsong at dawn [SFX], or even a well-designed sonic icon can be a feast for our ears. But as much as it’s a joy to listen to the world around us, our hearing is also a protective mechanism. It works hard alongside our other senses to add context, and protect us from danger. [SFX: Tiger roar]

But a lot of people live without their hearing. Worldwide, about one in every thousand babies are born deaf. ...and right now, there are about 1 million people in the US who live with complete hearing loss.

Brandon Edquist is one of those people. He’s deaf now, but wasn’t born that way.

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Here he is through an interpreter.

Brandon: When I was two, I contracted meningitis. The illness infects the brain lining, and from that I lost my hearing.

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There are lots of ways that a person can lose their hearing. The biological machine for making sense out of sound waves is incredibly complex. And like all machines, the more complex something is, the more there is to go wrong.

Issues can range from a simple buildup of earwax all the way to a punctured eardrum.

Hearing loss can also be caused by problems in the hearing organ or the nerve that carries sound signals to the brain. They can be damaged by accidents and disease, but problems here can also be genetic, or a result of the natural aging process.

Of course, not all hearing loss is immediate, or total. But when it is, people like Brandon tend to rely more heavily on their other senses.

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Brandon: I have become more sensitive to what I see. I notice things a little more. Body language, I notice that and catch that a lot more.

But when it comes to interacting with others, it’s not always that straightforward.

Brandon: Some people I talk with, they accept and they understand, and some just walk away and get angry. I've gotten so used to it, so it doesn't bother me that much.

Brandon’s a graphic designer, which means that he can make a living while avoiding many of these awkward face-to-face interactions.

Brandon: I have to communicate with a person through email or texting. We all write so it makes it easy to communicate.

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Brandon’s experiences might seem extreme, but statistically they aren’t all that rare. And even more people live with more moderate hearing loss, with even simple interactions posing a daily challenge.

Michael: The most common complaint is the inability to function in group settings, in cafeterias when there's noise, in a party... any place where there's competing noise.

That’s Professor Michael Dormon from Arizona State University. Michael has worked with people affected by hearing impairments for the last 40 years.

Michael: If you go back far enough, you have acoustic horns, it was realized that if you created something that looks like a megaphone, and you yell into one end of it, and you put the other end up to your ear, it sounds louder.

These paved the way for the very first hearing aids.

Michael: Electronic devices have been around for a long time after Edison who himself was very deaf. They actually were decently given the electronics, they were very bulky and unwieldy.

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These days, hearing aids are commonly offered to people with moderate hearing loss. Most consist of a microphone to pick up signals from outside the ear. An amplifier then increases the volume of those signals, and a speaker plays that louder sound into the ear.

Over time, hearing aids have become smaller and more effective. Nowadays, they can even be nearly invisible, with some being placed entirely within the ear canal. You may never know if the person you’re talking to has a hearing impairment.

Michael: I had been working for about a decade with the standard hearing impaired listener. Frankly, I wasn't getting anywhere, and I thought that there had to be something better than this.

So Michael began working with a new, emerging technology. A mysterious innovation called a cochlear implant.

Michael: I remember the director of my laboratory told me “take on a good problem Michael, in life. That's what you want, a good problem.”

Michael: A good problem was a hard problem. I remember him telling me "Michael, cochlear implants are a good problem. Stay with it."

[music in]

Sometimes, hearing aids just can’t cut it. That’s where the cochlear implant comes in. These implants can handle extreme cases of hearing loss, and can even reverse total deafness.

The technology is a bit more involved, but like a hearing aid, it starts with a microphone outside the ear.

Michael: That microphone signal goes to a signal processing device about the size of the hearing aid case and then it is transmitted across the skin to a receiver that is surgically placed under the skin. The receiver then transforms the signal into a series of pulses. The pulses are directed to a set of electrodes, which the surgeon has slipped into the cochlea.

The cochlea is a hollow spiral tube in the inner ear. Normally, sound waves move through the fluid inside the Cochlea, which waves little hairs back and forth. It’s this movement that’s detected and sent as a signal to the brain.

But in a cochlear implant the electrodes deliver the sound signal directly to the auditory nerve.

[music out]

Michael: The cochlea is very handy. It's laid out distance by frequency. We can think of the beginning of the cochlea, the high frequencies live there [SFX: High frequency sine wave], and towards the top of the spiral, the low frequencies live there [SFX: Low frequency sine wave]. If we can slip an electrode most of the way to the top of the cochlea, then we can reproduce sounds from high-frequencies, to mid-frequencies, to low-frequencies.

Now, the signal that the cochlear implant sends to the brain isn’t very high-resolution. It’s filtered into a small number of bands. But it turns out that’s all we really need. The brain manages to fill in the gaps.

Michael: When I tested my first implant patient with a very primitive cochlear implant, I asked him what it sounded like, and he said, "Meh, it sounds all right." I thought, "Well, that's interesting. It should sound awful."

In fact, it probably sounded something like this: [SFX: Early implant sound sample]

And here’s the natural version of that sound: [SFX: Early implant input sample: “The remarkable versatility of the human voice”]

And here’s the cochlear version again. [SFX: Early implant sound sample]

Luckily, since then, cochlear technology has gotten considerably better. ...and every year, more and more people benefit from the implants. Many of us will be familiar with them thanks to countless viral videos that document the moment they’re switched on.

[SFX: Switch on clip 1 start]

You hear my voice?





It’s hard to comprehend what it would be like to suddenly gain or regain a sense that simply wasn’t there before. But the sounds implant patients hear might not always be what they’re expecting.

[music in]

Michael: Even a very mild hearing loss, very early will over time lead to a reorganization of the brain. If you've had that mild to moderate hearing loss for years and years and years, by the time you'd get to qualify for a cochlear implant, we're putting that implant in a brain that is very differently wired than the wiring of a normal brain.

Our brains are remarkably changeable. If one part stops working, another will adapt to fulfill that function to the best of its ability.

Michael: The auditory cortex becomes reorganized. It responds to tactile stimulation and visual stimulation.

So after enough time without input the part of the brain that normally deals with sound is repurposed to help out with touch and vision. In the brain at least, there might be some truth in the old saying that losing one sense will heighten the others!

But this rewiring isn’t good news for cochlear implant patients.

[music out]

Michael: By the time you put an implant in a congenitally deaf adult, you're implanting into a brain that is massively reorganized, and so it's not at all surprising that the results in terms of speech understanding are very, very, very poor. On the other hand, there are some adults who tell me that they've always wanted to hear. They just want to hear something, and they do hear with the cochlear implant.

The thing about our remarkably plastic brains is that it bends both ways. Once the auditory cortex starts receiving signals through the implant, it can begin to remember how to process them again. Which is good news for Michael’s patients.

Michael: You go from the complaint that I can't function in society because I can't hear to being able to hear and function in society, and go back to work.

[music in]

We know that cochlear implant technology has improved, and we know that the brain can adapt to make sense out of the signal the implant provides. But until recently we’ve not known what it actually sounds like.

Michael: There was no way to check of course. There was no objective measure.

About ten years ago, people with deafness in only one ear started to receive implants and Michael saw the opportunity to try and match the sound in the implanted ear.

Michael: We could inject the signal into the implant, and then I could make up things for the normal hearing ear, and ask any of them sounded like the implant could be like fitting glasses. And so we play a sound to the implant, we play a sound to the normal ear.

In this way, Michael was able to figure out what an implant really sounded like for many of his patients.

[music out]

Michael: The most common difference is that the implant sounds muffled to one degree or another. A very common report from patients is it sounds like you're talking from behind a door, or you have your hand in front of your mouth.

It might sound something like this: [SFX: Muffled sound sample: “The sun is finally shining”]

But it’s also common for the entire pitch of a sound to be shifted up.

Michael: If you remember the movie The Wizard of Oz, there are little characters called, "Munchkins."

[SFX: Munchkin clip audio]

Michael: They used a professional voice actor to produce their lines and they recorded that actor at one speed. Then they played back the recording slightly faster. And what that does is increase the pitch, and moves the whole spectrum up a little [SFX]. That's the munchkin voice.

The same thing can happen with cochlear implants.

[music in]

The last 30 years have seen incredible improvements in cochlear implant tech. And some studies show that there could be dangers of living with hearing loss.

Michael: In quiet, individuals with hearing loss may be perfectly fine. Then as soon as you go to any noisy environment… [SFX: Noisy city] performance falls apart remarkably quickly. Functionally, they just stop going out. They don't interact with others and this brings us to the most recent findings of researchers that if you have a hearing loss, then the odds of developing something awful like Alzheimer's goes up.

Faced with the alternative, Michael hopes that more people will seek out cochlear implants in the future. As the tech improves, so too will the benefits to both quality of life and long term health.

But, there are many in the Deaf community who take an entirely different view. These are people with hearing loss who will choose to reject cochlear implants, regardless of how good they are.

All this time we’ve been trying to cure deafness, but in wondering if we could, did anyone stop to think if we should? Have we got it all backwards? We’ll discuss that, after the break...

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[music in]

In the last 30 years, improving cochlear implant technology has provided an almost miraculous cure for deafness. But there are some people who don’t see deafness as something that needs a cure. They say that It’s not a disability, and it doesn’t need fixing.

Here’s Brandon Edquist through his interpreter again.

[music out]

Brandon: At about three years old, I was given a cochlear implant.

Brandon: I remember going into the surgery room, I remember the mask and being put to sleep. After the surgery, there was some pain in my head. That's about all I remember.

The implant worked, allowing Brandon to hear sound once again. His parents hoped it would help him to live what they considered a normal life.

[music in]

Brandon: I used the cochlear implant as I went through my education. Many people explained that it would be like a mechanical sound, and it was.

Bradon: My parents really hoped that I would use it a lot, thought I would need to use it to become successful.

But the road to understanding speech was a rocky one, and Brandon worked closely with an audiologist throughout his schooling.

Brandon: The audiologist would sit behind me in a room and that person would talk and I'd try to hear the sound, what they were saying, through my cochlear.

Brandon: I'd go several times a week, but nothing of it really stuck.

Brandon didn’t enjoy using his cochlear implant and when he was a kid, he made every excuse not to use it.

Rather than rely on the noisy, electronic signal through his implant, Brandon found easier ways to communicate with his friends.

Brandon: When I was in Gen Ed school, and the classmates were hearing, but they seemed to understand about my deafness. We would communicate through gestures. They really didn't know any sign, so we used gestures.

[music out]

In 7th grade, he moved to a specialist school for the deaf.

Brandon: When I got to the school for the deaf everything changed. I very rarely had used the cochlear, I had it on, but I used sign. It was my choice to stop using it.

But Brandon wasn’t alone in rejecting his implant. His was just one voice in the growing dissent within the wider Deaf community.

Brandon: That was during a time when the idea of a cochlear implant in the deaf community was not popular. Most of the deaf were rebellious about it.

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Michael: Early in my career, the radical deaf culture individuals were very active. I remember a meeting in England where they actually chained the doors of our conference hall together, so we couldn't go in to have a conference about cochlear implants.

The message these activists were trying to get across was that cochlear implants are trying to fix something that doesn’t NEED to be fixed. Trying to cure deafness was offensive to the deaf identity. Their message was clear.

It might seem like a bit of an overreaction, but it’s born of real oppression.

Back in the 1880s, the inventor of the telephone Alexander Graham Bell had some seriously controversial views on people who were deaf and chose to remain mute. He claimed that they would choose to intermarry, leading to what he called a defective race. He went as far as to say that deaf-mute intermarriages should be forbidden. They never were of course, but it’s not hard to see why the deaf community felt so threatened, then and now.

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In reality, many individuals with hearing loss don’t consider themselves in need of fixing. They just belong to a different culture, and like any other culture, Deaf culture has its roots in shared experiences, a common language, and a mutual understanding of what it’s like to live in a soundless world.

It can be a powerful thing to belong to such a community. But, from Brandon’s experience it can sometimes be too closed off.

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Brandon: The deaf people really are protective of their community. It's a small community. They are very careful about who joins them and who does not join them.

Brandon: There are some who are more open who are willing to accept others and are willing to teach the language and teach the culture. It varies.

Even though he chose not to use the cochlear implant he got when he was very young, he can still find it hard to navigate the deaf community.

Brandon: The deaf community is part of self-identity. I feel part of that, and sometimes it is hard to fit into that. I do identify deaf, but because of my experience in mainstream, sometimes I don't feel I fit in.

The deaf identity is such an important part of the deaf community. So it makes sense that the growing popularity for cochlear implants seemed to threaten that close-knit group by threatening the deaf identity itself.

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Today’s cochlear implants can restore hearing to the deaf, allowing them to integrate seamlessly into the hearing community. But in choosing to live with his deafness, Brandon finds that relatively few adjustments are needed for him to live the life he wants.

Brandon: My parents use sign. My friends are deaf and we use sign. My hearing friends, we are still able to communicate very well through texting, through our phones, so it's been no problem.

But in terms of general accessibility, there’s still some way to go.

Brandon: I know many deaf who wish that sign language was used more and taught more in the school systems so that hearing people can learn more and that way the deaf community can be more part of the community.

Brandon: There's a big inequality of jobs and lack of jobs, lack of employment for the deaf community. Yes. They have the skills. They have the knowledge, but sometimes, the disability may not be clear enough, so it can be hard for deaf people, and hearing people usually try to come up with an excuse to not hire a deaf or find some other way to communicate. There's always an excuse.

Even today, cochlear implants are a touchy subject. There’s been a resurgence in people speaking out to support deaf culture and the deaf identity. But ultimately, the choice will always be down to the individual.

On one hand, Michael believes that implants can improve quality of life, and urges people to seek out the surgery.

Michael: You don't do it for yourself so much as the ones around you. It will help your family just as much as it'll help yourself.

But on the other hand, if given the opportunity to wave a magic wand and gain the ability to hear, would Brandon choose not be deaf anymore?

Brandon: No. No. No. Laughing, no.

[music out]

[music in]

Twenty Thousand Hertz is produced out of the studios of defacto sound, a sound design team dedicated to making the world sound amazing. Find out more at defacto sound dot com.

This episode was written and produced by Leila Battison, and me Dallas Taylor. With help from Sam Schneble. It was sound edited by Soren Begin and sound designed and mixed by Colin DeVarney.

Thanks to our guests, Professor Michael Dorman, and Brandon Edquist.

Michael is a Professor Emeritus at Arizona State University. He continues to research speech understanding with cochlear implants, and hopes someday to see implants that can reproduce sound perfectly.

Brandon is a graphic designer. You can check out his work on his website, at brandonedquist.com.

You’ll have noticed by now that this season we’re sometimes asking people what their favourite sound is. This episode is a little different, so I’ve asked Brandon what his favourite sensation is.

Brandon: Visual. I like watching TVs and movies, and feeling the vibration with all the action, that's my favorite feeling, sensation, of all.

All of the music in this episode was from our friends at Musicbed. Check them out at musicbed.com.

A special thanks to Esparanza Garibay for naming this episode. Esparanza chimed in on a request for show titles over on Facebook and suggested we use the title Deaf Gain. She’s deaf and said that Deaf Gain a pretty common phrase in the deaf community. An example of when they might use it would be in a super noisy environment like a party. They’ll their hearing aid or Cochlear Implant and sign “deaf gain” to each other. They might also sign the phrase when they’re able to talk to each other across rooms. Stuff that us hearing people just can’t do. It kinda gives them a super cool superpower. Everyone on Facebook including myself fell in love with the phrase because it’s also the opposite of the term Hearing Loss. Hearing Loss, Deaf Gain. It completely changes the framing of deafness. Anyway, that’s one of the many reasons you should follow us on social… to find incredible stories like that that pop up spontaneously. You can find us on Twitter or Facebook by simply searching for Twenty Thousand Hertz. And when you’re there, be sure to say hi.

Thanks for listening.

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