Category: Open Ears

Tell Them, I Say [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

The other day I was chatting with my podologist (who is also a friend) and the topic of hearing aids and hearing loss came up.

She was surprised to learn i had hearing aids (we’re not close, so it’s understandable she didn’t know), and quickly started telling me about how many of her clients are elderly people who are hard of hearing. She said she often had to repeat things and had made it a habit of speaking loudly.
guidance
I asked her if she ever told them, explaining that as we can’t hear what we don’t hear, many people with hearing loss underestimate the degree to which it impairs their ability to communicate. Often, indeed, it is comments from people around us that drive us to investigate our hearing.

She was stunned to realise that they might not be aware of their condition. Based on the information I’ve gleaned here and there (and my own personal experience), I think it’s common for people who are in denial about their hearing loss to assume that it’s the person speaking who is mumbling or not talking loud enough. Or that we can hear fine when people speak, it’s just that we have trouble understanding.

Since I’ve been fitted, I have to say I’ve been on a bit of a mission to encourage people around me who suspect they might not hear well or who know they have hearing loss to take the first step of getting an audiogramme done. At the very least, you get some kind of objective measure of your situation.

I encouraged her to broach the subject with her clients, when it was obvious to her they weren’t hearing well. “Have you had your hearing checked lately?” Or “do you know you ask me to repeat things often”, or “I make a conscious effort to speak loudly with you, it might be worth getting an audiogramme done.” I also explained how it is better to be fitted early, as adjustment to hearing aids is less brutal with milder loss, and when you’re younger. Better not wait until you’re 95 and deaf as a doorknob to get your first hearing aid!

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How I “Get” People to Talk to me so I Can Understand Them [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

A complaint I’ve heard a few times lately in the hearing loss support groups I hang out in is that “full-hearing” people resist making the effort to talk to us in such a way that we can understand them. Or they do sometimes, but then forget. I feel a lot of frustration around this for some people, sometimes translated into judgements about the other “not caring” or “not paying attention” or “being offended”.

Misunderstanding

This reminds me a little, in a “through the looking-glass” way, of how we “less-hearing” people are sometimes accused of “not paying attention”, “not making an effort”, or “being distracted”.

I try to always look at situations like this from the various points of view of the players involved. My work with people and technology, as well as teaching, have led me to adopt a kind of “user-experience-centric” attitude. Now, UX is definitely not my primary field of expertise (so forgive me in advance if it’s yours), but one thing I do quite consistently is try and put myself in other people’s shoes and see the logic in their way of thinking or doing things.

How does this apply here? What does it look like for people with full hearing who are trying to communicate with me?

People have communication habits. Volume of speech, but also, they know from experience when they can be heard or not, at what distance conversation becomes impossible. Most people being “well-hearing” (I kind of like that expression), their communication habits are adapted to people without hearing loss. Years ago, a friend of mine commented (when I said that I didn’t seem to have too much trouble understanding people) that everyone around me made efforts when speaking with me, but that I didn’t see it. They subconsciously spoke louder, learned to get my attention before saying something, etc. It was a bit of a shock for me. But it made sense. (This was before I got fitted.)

So, basically, when we have hearing loss, we’re requiring of people around us that they communicate differently with us, and break their deeply ingrained habits of speech for us. They need to learn and remember that they need to speak to us from distance x < “standard intelligible conversation distance”, for example. Or they need to remember not to speak to us when we’re not looking. Or when we’re in another room. Or too softly. All these things that “work” with almost everyone they know do not work as well with us. They’re used to talking to other neighbours from their balcony or across the street, but that’s too far for us.

I try to keep this in mind. I approach it like training. It’s my responsibility to teach them what works and doesn’t work with me, communication-wise. And sometimes spelling things out is really useful.

I usually take a moment at some point to tell “new people” that I don’t hear well, and that even with my hearing aids I might ask them to repeat stuff if they are looking away from me or in another room. If I’m without my hearing aids, I tell people.

I know they are going to forget even if they don’t intend to, and it’s never pleasant to be reminded that you forgot to do something that is necessary for somebody else. So even though it’s not my fault I have hearing loss and I don’t have to apologise for it, it’s not their fault either and I am asking them to do something out-of-their-ordinary to accommodate my particular circumstances. That’s why I often apologise when I ask people to repeat things (not systematically, but at least a few times in the beginning). I’ve never seen anybody be offended that I’m asking them to repeat. I’ve seen confusion when they repeat and I still can’t hear, irritation maybe at being asked again and again to repeat, or at failing to communicate.

When that happens, I try to give people clearer instructions: for example, I say “for me to understand you easily, get my attention first so that I can look at you” or “if you’re this far from me I probably won’t understand” or “if you’re in another room I probably won’t either”. Or “I’m sorry, even with my hearing aids in my hearing isn’t as good as yours, you need to speak louder for me to be able to understand you.”

I need them to do things differently for me, but if I don’t tell them clearly what it is they need to do, and if I don’t patiently give them feedback, they can’t guess.

How do you deal with this? I think strategies are going to vary a lot depending on the degree of hearing loss we have.

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Why Do We Underestimate Hearing Loss? [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

People wait a long time to get fitted with hearing aids. I’m a good example of this, having hearing loss since birth (we guess) but waiting until my 38th year to do so, after figuring out “something was up” with my hearing when I was 13 or so.
hearingloss_underestimate_i
In his article about baby boomers and hearing aids, Steve points to an article in Hearing Review which mentions an average of 7 years waiting in the US between identifying hearing loss and actually getting hearing aids. The article is Right Product; Wrong Message, and you should read it. It’s about how we can try and change the social norm in hearing care, how hearing loss is perceived, etc.

Anyway. I waited, and it seems I’m not alone.

One thing I realised when I got fitted is that I had underestimated how much hearing loss I had. Various conversations I’ve had since then with audiologists at Phonak and other people with hearing loss have led me to believe that this is quite common.

You cannot hear what you cannot hear.

When you lose your eyesight, you still see everything, but it’s blurry.

When you lose your hearing, the sounds you don’t hear just cease to exist. You don’t know you don’t hear them anymore. You can’t “hear” that you didn’t hear the doorbell. You can’t “hear” that you didn’t hear somebody talking to you when you had your back turned.

Another way in which eyes and ears are different.

When hearing degrades, or just wasn’t there in first place, you rely on other people to inform you that they tried speaking to you and you didn’t hear them. Or that they’re not mumbling, they talk like this with “everyone” and only you are making them repeat every second sentence.

We shape our lives around our capacity for hearing. My preference for quiet places and one-on-one situations is not a coïncidence. These are the social situations in which my hearing doesn’t prevent me from communicating and enjoying myself. When I got fitted, one of the things I noticed is that almost all my friends were loud speakers. Funny, eh? Sometimes I think of all the soft-spoken people I never got to know because I simply couldn’t understand them, or maybe didn’t even hear them try to talk to me.

I personally think that one of the major reasons why people wait to get hearing aids, setting economic reasons aside, is that they are not aware of the benefits hearing aids could bring in their lives, because they don’t realise what they’re missing out on because of their hearing loss.

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The First Time I Resented My Hearing Aids [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

It was last week. I guess a two-year love story with my aids is not too bad, so it had to happen someday.

Playground

I was working in my office when a loud alarm-like sound went off. Now, in certain parts of the world this is habitual, but not in this quiet little part of Switzerland. We don’t have house and car alarms going off twenty times a day (we don’t have house or car alarms most of the time). Ambulances and police cars sometimes go by but they won’t use their sirens unless they need them.

We looked at each other in the office, and I hopped out of the ground-level window to investigate. Was this going to involve calling the police?

The noise actually seemed to be coming from the playground, and not the parking lot next to it as I had thought initially. By the time I was close enough it had stopped. I checked out the playground and saw a couple of little kids putting down huge plastic sci-fi guns down. Now that was more plausible than a rogue car alarm: noisy toys. I wandered around the garden a little, searching for one of my cats, when the sound went off again. This time it was clearly coming from the playground, and I could see the kids in full action with their guns, shooting at imaginary hostiles in the bushes.

I made for the playground, called to the kids, and told them off for making so much horrible noise when there were people trying to work or rest in the neighbourhood. We like our peace and quiet here in the land of the Swiss. They looked at each other, at me, shrugged it off, and as I turned to go, I heard a woman calling to me from the balcony three floors above. They were her kids, and she was quite angry at me for telling them off when they were just playing in the playground on a sunny vacation day.

I told her that yes, I had asked them to stop that horrible noise because it was really unpleasant. She went off in a big rant about letting kids play and that I just had to live with it. I told her again that the noise was really bad, and that I was wondering what was going on because it was so loud and sounded so much like an alarm. She wasn’t really listening to me, though, and just ranted back.

That’s when one of the men in the park jumped into the conversation and said it was a car alarm. And I said yes, it sounds like a car alarm, don’t you agree it’s a bit disruptive for “kid’s play”? But he insisted. It was really a car alarm. It wasn’t their toys.

As soon as I realised what a terrible mistake I had made, I immediately apologised profusely, to the mother, and also to the two boys, with whom I double-checked that it wasn’t their guns. They seemed to get it.

The mother didn’t, however. She continued ranting at me even though I was now trying to explain that it was a misunderstanding and I was mortified about having told off the kids who were doing nothing wrong. And of course I would never have told off kids for playing in the park, I only did so because I thought their guns were making this horrible loud noise. I couldn’t get a word in, and I’m usually pretty good at that.

At one point I understood she had no clue which noise I was talking about, and so when the alarm went off again, I pointed it out to her. She clearly thought I was crazy for imagining this noise could come out of a child’s toy and scoffed at my explanation. I wonder now if she thought I was trying to make up an excuse because she had “caught me” telling off the kids for playing?

And then it dawned on me. One piece of information she was missing was my hearing loss and hearing aids. So I tried to tell her. I said “I’m sorry, I’m hard of hearing and sometimes I have trouble judging the volume of noises and where they come from.” The ranting didn’t stop, and as by that point I was bursting into tears, I ended up walking off.

Now, there were a bunch of upsetting elements and triggers in this episode for me. I was stressed, preoccupied about something unrelated, and being falsely accused of something (like hating children and not wanting them to enjoy their spring holiday) is one of my big triggers. But what particularly upset me here is that I would never have got myself into this situation if I didn’t have hearing loss and hearing aids.

My world of sound is not imaginable for the angry ranting mother on her balcony. My hearing aids are wonderful when it comes to communicating with people, but two years in (and maybe my fault for not wearing them from morning to evening even when I’m alone?) there are still some ambient sounds which startle me and register as “unknown” because they’re just not at a volume I expect. And despite all the wireless and electronic magic going on in my hearing aids, I do get the feeling that for certain sounds, I have more trouble than I used to identifying their origin.

My hearing loss has long felt like a detail in my life. These last years, particularly since my fitting, have been a journey in realising how much a core part of who I am and how I relate to others has its roots in how much — or little — I hear. I’m used to having one-way communication with children I don’t know, because without hearing aids, I can’t understand a quarter of what they say (and children are not good at all at dealing with an adult who asks them to repeat stuff). Had I approached those boys to talk with them and make sure their guns were making the noise I suspected, things would have been different. But I didn’t, because I’ve learned not to start conversations or ask questions when I’m not going to be able to understand the answer. Had I not been muddled about volume and orientation of the sound I heard, because I can still be surprised at how unexpectedly loud certain sounds can be, I wouldn’t even have suspected the kids for starters. I thought the noise sounded loud to me because I was wearing my hearing aids, not because it actually was that loud.

It hurts to realise that my ears (organic and electronic) can lure me into such socially disastrous situations.

After I’d calmed down a bit, I went back to the playground and approached the kids. I wanted to make extra sure they had understood what the misunderstanding had been, and heard how sorry I was to have wrongly told them off. They had! 🙂

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Eyes And Ears: So Different? [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

Since I started spending so much time thinking about hearing loss and hearing technology, one of the things I’ve obviously been thinking about it social stigma related to hearing loss. Stigma is immediately cited as the reason people wait so long to get fitted, and the reason for which “invisible” is a great quality for a hearing aid. (Not everybody agrees, though.)

Corinne with glasses
Photo credit: Corinne Stoppelli

In an attempt to wrap my head around some of these issues, I’ve been trying to make parallels between eyes and ears, glasses and hearing aids. Why is “not hearing well” considered so differently from “not seeing well”? Saying “there’s more stigma” is not really an answer. Social stigma comes from somewhere, right?

I think the main thing we need to consider here is that hearing loss impacts our relationships to other people, whereas visual loss (!) mainly impacts our relationship to the world. If you have trouble seeing, you will stumble, you will not be able to read the signs, you will not recognise objects (maybe even people), but you will not be prevented in a significant way from interacting with others. Whereas with hearing loss, even “a bit” of it can mess up relationships: hearing loss can mean you pass for rude, or stupid, or uncaring, or distracted, or uninterested — because you just couldn’t hear what the other person thought you did.

I think this is the deep, social root of the issue. Being short-sighted isn’t perceived as a disability. It’s a reasonably normal, common condition. In Switzerland, your health insurance covers your glasses to some extent. If you’re “short of hearing”, however, it immediately falls under the “disability” label. What financial contribution there is to your hearing aids (if you’re entitled to it) comes from the Invalidity insurance.

To reinforce this, glasses are “in your face” visible and all over the place, whereas hearing aids go unnoticed most of the time. Since I was fitted, my keen eye for detail has been scanning ears in public transport and supermarkets. There are actually lots of people with hearing aids out there, but if you’re not paying attention, you won’t notice them!

One thing that has been bugging me a lot is how there is a linguistic double-standard for ears and eyes. We have a specific word for those things we put on our nose to compensate for bad eyesight: “glasses”. But what words do we have for those devices we wear in or on our ears? “Hearing aids.” I’ll probably do a proper article about the language issue, actually. Stay tuned 😉

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Depending on my Hearing Aids [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

With the early days of hearing aid wonder hearing behind me, I sometimes find myself forgetting them. The other day, it happened again. I left home and realised just in time that I didn’t have my ears with me.

I blame my morning shower. I have to wait until my ears are completely dry to put my hearing aids in. By that time I’m up and about and out of my “waking up and getting started” routine. What is the best solution to this? I definitely haven’t found it yet.

As I live alone, I rarely wear my hearing aids in my flat. I did during the first months though, to help my brain get used to them. And when I’m in public transport, I’m often listening to podcasts with my earbuds in — not physically compatible with having hearing aids in your ears too. So I don’t put them in each time I leave the flat, either.

Each time I catch myself leaving home without my hearing aids in my handbag, I turn back with this sense of dread in the pit of my stomach, imagining what would have happened if I hadn’t realised I was missing them. Today, the thought of teaching a class, giving a talk, having a meeting or just coffee with a friend without my hearing aids feels like an impossible mission. It almost makes me panicky to think about it. I find myself wondering how I ever managed to do without (and so, so much!) for so long.

It makes sense, though. My brain is “less trained” in compensating my hearing loss. I have less practice. And so, when I do have to compensate like I used to, I struggle much more.

When I was in India last year, one of my hearing aids escaped my fingers as I was taking it out of its box, and it dropped to the floor. When I put it in my ear and turned it on, it was dead.

Heck. Cold sweat.

I had three weeks of travel left. I ended up FedExing the broken hearing aid to my audiologist in Switzerland, who changed a component, and FedExed it back to me. India being India, the whole thing took about 10 days. But at least I had two hearing aids for the end of my stay. Those 10 days when I had to manage with only one hearing aid were terribly annoying and frustrating. I really felt handicapped.

Every now and again, I go “naked ears”. I chat with my neighbour without my hearing aids. Yup, I can still have a conversation. That’s reassuring. It feels a bit muffled, but I can still understand what she says. When I’m looking at her. When she’s facing me. Because she speaks rather loudly and clearly. And then she says something to me with her back turned, or in a lower voice, or over noise, and I remember why I love my hearing aids, and rather than feeling dependent, I feel grateful for them.

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Musings on Fitting Strategy (and Pricing) [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

Since my last visit to the Phonak headquarters I keep mulling on the conversation I had with Solange about fitting and pricing strategy. We know hearing aids come in different price ranges, and the benefits they provide to the wearer change as you move up in technology. These variations in price are not isolated to a specific piece of hardware or software, but reflect the overall experience the wearer receives when using them in more complex listening environments. And that, ultimately, is what we pay for, as hearing technology users: a better life experience.

This reminded me a lot of all my musings on value-based pricing as an independent professional. What is the service I’m providing worth to my client? What is the better life and communication experience that the hearing aid brings worth to the hearing impaired person?

The question of how much we value our new hearing leads to another issue: we usually don’t know how good it could be. People with hearing loss often don’t really measure how bad it is — we can’t hear what we can’t hear, right? When it’s always been there, or it’s very progressive, how are we to know how much easier a hearing aid could make our lives?

Solange kind of shocked me (in a good way) by telling me that when she was a practicing audiologist, she would always fit her clients with the best available solution first, regardless of price. Yes, price is important and budget is often a limiting factor. But how do you set a budget for something when you have no idea how much impact what you’re getting is going to provide? Fitting with the best available solution provides a baseline for “how good it can be”.

This is completely different from how I approached things. I wanted to spend as little as possible. I mean, of course I wanted hearing aids and was willing to pay the price, but I didn’t want to pay 10k when 3k might do. So, we started out with an entry-level solution. It was great! It was astounding! Even at 8dB below my ideal settings according to the manufacturer (hardly any amplification, really), I was hearing better than I’d ever heard before. Two weeks after my fitting, if you had given me the choice between going back to a hearing-aid-less world or keeping what I had, I would have kept those hearing aids with that insufficient setting without any hesitation.

As weeks went by, and we increased amplification, and the initial wonder wore off a bit, and I started noticing things that “could maybe be better”, I started wondering what a more expensive hearing aid might do for me. So we went one step up. And it was slightly better. And I ended up buying the second pair.

But today, I still don’t know how good it could be. Is what I have as good as it gets? How good would it be, and how would my life experience be improved, if I had the highest-end solution available for me? Who knows, maybe it would be so incredibly better, beyond all my imagination, that I would be willing to pay way more for it than what I initially intended — just like I ended up spending unbudgeted money on a pair of skis this winter because they make me feel 20 years younger when I’m on the slopes? And maybe it wouldn’t, and the small increase in quality of experience would not be worth the higher price for me — and that would be fine. At least I would know that what I’m hearing now is as good as it reasonably gets for me.

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Two Days in Stäfa [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

A few weeks ago, I spent two days at the Phonak headquarters in Stäfa, near Zurich. If managing a blog and writing for it can be done remotely, meeting people can’t.

Phonak headquarters Stäfa

People are sometimes surprised that I value face-to-face exchanges so much when I am such a “digital” person. Well, I do — you get something out of spending an hour in the same room as somebody that is very hard to reproduce at a distance. I sometimes wonder if it has anything to do with my hearing loss: I need to see people, probably because in my 38 years without hearing aids, I’ve relied a lot on non-verbal communication. I don’t like talking on the phone with people I’ve never met or don’t know well (close friends is another story, I can talk on the phone for hours with them). And as for video conferencing… give me good sound quality and high-quality video which doesn’t freeze or lag, and I might start taking it seriously.

For my third visit, Vincent had set up meetings with various people inside the company, as well as a guided visit of the production centre. I could have stayed in there the whole day, actually — the geek/engineer in me just loves big machines and production chains, obviously.

Robot Arm Electrodes

I was amazed at how much machinery goes into producing the tiny devices that we wear behind (or in) our ears. I also learned that some of the machines used in the process are actually made by Phonak, too. So not only does the production centre contain machines that build hearing aids, it also contains a tool shop that produces machines needed to produce hearing aids. See the idea?

The discussions I had with Kurt, Ora, Katharina, Solange and Jean Anne made me dream about the future (some insights on what’s around the bend, like distance fitting and 24/7 aids — already there in fact) and reconsider some of my assumptions (on device pricing and fitting strategy).

From the first time I set foot in the Phonak headquarters in December, I have to say I really liked the feel of the place. My initial impression was that I had entered a university rather than a company building (it’s a compliment in my book). It’s very open, light, with running water in the lounge — very welcoming. It feels more like a place for research than for commerce, and I like that.

Phonak Stäfa Inside

The people I’ve met so far are all very enthusiastic regarding this blog project. It’s extremely encouraging! We haven’t “launched” officially yet, but the news is spreading word-of-mouth, and we bump into people who say “I heard a rumor… is it true? :-)”

As I digest everything I heard and saw during these two days and create blog post drafts in WordPress, I’m concentrating on the next step in my mission: find motivated bloggers, internal or external, who want to share their stories here!

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I Don’t Hear Very Well [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

“I don’t hear very well.” This is what I’d been saying since I discovered, age 13, that I didn’t hear very well. “I don’t hear very well.” My hearing was checked, I was given the verdict “yeah, so you have some hearing loss, we’re going to give you hearing aids”, and sent to an audiologist to be fitted. They took some measurements, filled my ears with pink stuff, and next time I went there I left with a rather big pair of skin-coloured inside-the-ear aids.

They felt uncomfortable, I could hear background noise, the world was too loud, and girls at school made fun of me. I wore them two days, maybe three, then put them back in their box, never to be taken out again. I decided that it wasn’t that bad after all to “not hear very well”, and that I would cope.

And I did, for the next 25 years.

Steph Audiogram

In 2012, after a couple of years of “getting there”, I finally decided to get fitted again. My brother had got hearing aids a few years before and what he told me of the process and the changes in his life really encouraged me. (We have similar hearing loss, hereditary.) I shared some of my thoughts on my blog right after getting my hearing aids (“A Week With My Superpower”) and a month or so later (“More About Hearing Aids…”).

Nearly two years later, my hearing aids are part of my life, and I wonder why I waited so long. I still end up saying “I don’t hear very well” every now and again, but now I can add “I’m not wearing my hearing aids just now,” or “Even with hearing aids, I don’t hear as well as you.” The impact is different!

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The Secret Deafie [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

One of the things I’ve been doing these last weeks is hunting down all sorts of online publications and communities that have to do with hearing loss, deafness, hearing aids, implants, audiology… The field is vast and the number of online spaces to discover event vaster!

Secret Deafie Limping Chicken

I just discovered The Secret Deafie, an anonymous and multi-author column on The Limping Chicken. It’s a collection of personal anecdotes, from funny to poignant, and I had a really great time reading through them.

You’ll hear about using the Deaf Card to outsmart an angry man, signing on the Tube during rush hour, how forgetting to wear one’s hearing aids can be a good thing, a deaf person who gets a deaf awareness lesson, how missing subtitles in a Sky subscription push a deaf sci-fi fan into downloading, losing sight when you’re deaf, and yes, even fare-dodging (my personal favorite so far I would say).

Reading these stories makes it obvious to me how different the lives and challenges of these Secret Deafies and mine are, pointing out how wide a spectrum the expression “hearing loss” may cover. Expect more musings about vocabulary in a later post.

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