Incident malentendant [fr]

La surdité est la plupart du temps invisible (“malentendance” serait plus correct mais moche). On voit les lunettes, mais pas les appareils auditifs. Tout à l’heure au centre de biométrie et des documents d’identité, le gentil fonctionnaire m’envoie dans la cabine photo-empreintes, puis me donne des instructions depuis derrière son guichet.

Je ne le vois pas. Je ne l’entends pas très bien. Je stresse, j’ai peur de mal comprendre ce qu’il me dit. La première photo, je regarde à gauche, parce que j’ai pas retenu “regardez droit devant vous” et que je tendais l’oreille pour voir s’il me disait quelque chose, et quand je tends l’oreille, je regarde à droite et à gauche, visiblement.

Sur la deuxième photo, j’ai la pire tronche de repris de justice, parce qu’en plus du look “photo d’identité biométrique” je suis stressée et concentrée.

Je ruminais sur cette histoire en rentrant, et j’ai réalisé un truc: j’ai toujours peur de mal comprendre les consignes ou instructions quand il y en a. C’est vraiment un truc qui me stresse. Si on me demande de faire un truc, je dois avoir 100% compris ce qu’on attend de moi. Peut-être que ce n’est pas juste un truc d’angoissée, mais aussi un truc de malentendante-pas-appareillée-durant-ses-tendres-années-formatrices?

Similar Posts:

Never Mind, It’s Not Important [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.

You’ve read articles about this, right? How we the hearing less don’t appreciate being told “never mind” or “it’s not important” when we’re asking for something we didn’t understand to be repeated.

Since I started wearing hearing aids, I’ve had a few years to reflect on the impact growing up hearing less, first undiagnosed, then underestimated. When I see what a hard time adults sometimes have adjusting their communication habits to my ears, and that I still sometimes fake it despite my fancy cutting-edge hearing aids, I can only imagine what an impact this had on my relationships and ability to socialise as a child.

Some years ago I met up with a few girls I was in kindergarten with. It was really fun to meet them as adults, and we got on great, although we weren’t all exactly friends when we were in school together. I saw them as the “popular” girls and they didn’t seem to be very interested in me. As I was mentioning that, one of them remarked that it wasn’t they didn’t like me, but that I didn’t really speak to them or answer when they spoke to me.

never-mind-it-s-not-important

Shyness? I was shy. But now, I’m thinking I probably didn’t even hear or understand them. And, as another said, “we were five years old”.

What I’m getting at is that when you don’t hear as well as most of the people around you, you are automatically left out to some extent. You don’t have access to the same sound information as everybody else. You miss things. You misunderstand things. And when you are a child or a teenager, you will be mostly dealing with human beings who are probably not very good at taking that into account.

For many years I blamed my social difficulties as a child on being “awkward”, or not socially skilled, or not likeable, or whatnot. So yes, maybe I was a smart nerdy awkward kid, but the more I think of it, the more I’m convinced that my hearing loss played some role in there.

I’m dragging you into my childhood because I think that for those of us who grew up with hearing loss, “never mind” and other “it’s not important” responses hit right upon this sore spot of being left out. For those who lost hearing later in life, it probably hits a slightly different button, the one about losing an ability you had in the past, and not being able to function socially as you used to anymore.

There is something dismissive and patronising in “never mind”. The words being said were words I was expected to hear and understand, that others around heard and understood. They were uttered and audible-to-normal-ears, and as such made available to the hearer for an executive decision about their importance. If it really weren’t important, you wouldn’t have said it, right? And, as I like to point out to people who dismiss social media as “useless chatter”, these seemingly random and unimportant exchanges are the very ones which draw people together and create relationships.

What “never mind” says is “it is not worth the effort to give you access to this information that other people have”. It is not worth including you. And yes, I get it. You might think it’s not worth the effort.

But to me, it means a lot to feel included, to feel that I am worth the effort. Even if it’s just to get confirmation that indeed, it was nothing important.

At least I get to make that call.

Similar Posts:

I Never Lost My Hearing [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.

Though I find myself favouring the expression “hearing loss” to talk about “hearing that’s not ‘normal'”, it always feels wrong for me.

You see, I haven’t lost my hearing: I just never had it. Well, the part that’s missing. Because there is a sizeable chunk that is there. Give me 60 dB in any frequency (down to 25 in my better ones) and I’ll happily hear.

As far as I can tell, I was born with “hearing like that”. I share my cookie-bite audiogramme with my brother and father, a typical situation of hereditary congenital “not hearing well-ness”.

Saying “hearing loss” makes it sound like at some point I lost my hearing. Like I have a “before” and an “after”, or that my hearing is deteriorating. That I have an awareness of what life with “more hearing” is like. But my “loss-less” story is very different from the stories of loss that others like Stu, Christina, Howard or Angie have been through.

I-Never-Lost-My-Hearing

I have not suffered the trauma of losing. I only have the grief of having never had, and of realising at age 40 how much more difficult my hearing impairment made my life as a child and a teen (even an adult!) during all those years where it was first undiagnosed, then underestimated to the point I just decided to cope, because it was “no big deal”.

But it was, and it’s painful to think about.

I am left with not knowing how to describe myself or my hearing, in terms that are both understandable by others and do not betray my experience of living with these somewhat wonky ears. I fall back on “hearing loss” in English, and “je n’entends pas bien” in French, but they feel like a pair of jeans that is not quite the right shape for me.

This struggle with language is, in my opinion, symptomatic of both the lack of general information about D/deaf/HoH issues in the hearing population, and (related of course) the greater social stigma (leading all the way to denial in some cases) around hearing vs. vision impairments.

Because of our unease around malfunctioning ears (yes, I dare say that), we do not speak gladly of hearing loss/impairment/problems, and the inadequacy of our language is there to remind us of this state of affairs.

We “on the spectrum” are tossing these terms and expressions around, and will continue to do so for a while before they agree to settle.

Until then, we will do the best we can with the words we have — at the risk of being misunderstood.

Similar Posts:

The Hearing Loss Spectrum, Between the Hearing World and Deaf Culture [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 becoming the editor of this blog, one thing I’ve struggled with is the diversity of “hearing loss” experiences we would like to reflect. This is parallel with all the questions related to the minefield of hearing-related terminology, which we’ve touched upon in a couple of past articles. I actually drafted another article on the topic after Christina wrote hers about reclaiming the term “hearing impaired” for herself. But it’s been sitting there because I didn’t feel I was managing to get it right. And because I’m very much afraid of saying the wrong thing on a loaded topic (as I am with this very post).

In what I’ll call the “hearing loss spectrum”, for lack of a better expression, there is a reasonably obvious distinction, the importance of which was recently brought to my attention on a couple of occasions. Not that I wasn’t aware of it before, but I’ve come to a deeper understanding of it — and of its relevance to the editorial line of Open Ears (part of my job here).

The distinction is the following: is your primary means of communication through vocal speech, or signed language? Of course there are people who use both, but for most or us I think, it is one or the other. Is your culture hearing culture, or Deaf culture?

About a month ago I heard that Christine Sun Kim was giving a talk at the MIT Media Lab. Christine is a sound artist — and she’s deaf. Of course this made me curious, and I thought it would be interesting to talk about her work on Open Ears (which I’m doing, actually, by writing this ;-)). Then the “rift” between parts of the “hearing loss” and “deaf” communities was pointed out to me. My initial reaction was “no big deal, Open Ears is about the whole ‘hearing loss spectrum’.”

But in the days that followed, and as I read more about Christine’s work, and watched videos, and explored more about deaf language and culture [PDF], I realised that I was missing something.

Hearing technology (hearing aids and cochlear implants, mainly) is about making it possible for those who want it to take part in hearing culture as normally as possible even though their “lesser hearing” makes this difficult, to varying degrees. In that respect, this blog is clearly about the hearing world.

A couple of weeks later, I met a woman whose son is deaf. He can hear very loud sounds (ambulances etc.) with the help of a powerful hearing aid, but that’s it. They sign, of course. She was telling me about how extremely difficult our Swiss ideal of “total integration in the classroom” was for deaf kids (like asking little hearing kids to take part in a class full of telepaths).

Her story kind of drove home for me how very different it is to be part of hearing or deaf culture — deafness here as a linguistic and culture minority: the Deaf.

And so, yes, there is a whole spectrum of hearing loss. But at some point there are two worlds that are culturally different and communicate via different mediums (oral speech or sign). To some extent, they are related to degrees of hearing loss, but not necessarily.

This is quite obvious, I’m aware. It’s not a new idea for me either. But as an editor who is forever thinking about and questioning the editorial line of this blog (do we write about this? and what about this? and this? or not?), these two encounters helped me clarify that we do not want to encroach upon the territory of all the great Deaf publications out there, and that Open Ears respectfully remains on the “hearing culture” side of hearing loss.

Similar Posts:

Faking It [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.

In one of his recent articles here, Stu mentions bluffing. If you are, like us, of the “hearing lost” (Stu again, I love this expression), then this probably strikes a chord.

How much do you fake it? How much do you pretend you’ve understood when you haven’t?

For me: a lot. Much less now that I have hearing aids. But before…

I understand now. I was making colossal efforts to compensate for my hearing loss. And at some point, the effort is not just worth it anymore, and it’s easier to pretend. Like Christina pretended to hear Santa Claus because it was less painful to bluff than to stick out, once again, as different.

In a way, I tell myself that my years of faking it have made me super sensitive to context, and pretty good at filling in the gaps. My brain is always running around to find missing pieces, definitely a useful skill when problem-solving. But let’s not kid ourselves, I missed out on a lot, and also did myself a disservice socially at times, by “not getting it”.

fakingit-940x492_052015

With hindsight, it was the fire and the frying pan: is it worse, socially, for a nerdy teenager to be asking friends and classmates to repeat everything, again and again, or is it worse to miss out on stuff and misunderstand?

Even today, and even with hearing aids, I sometimes still fake it. I’m much bolder about speaking up and asking people to repeat themselves or talk to me in a way that I can understand them.

But when you’ve asked somebody to repeat something twice, or even three times, and you still can’t understand them, what do you do? At some point, I just smile, nod, and laugh, and move on beyond this moment of failed communication.

Similar Posts:

Hearing Loss in Percentages and Decibels [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.

For years, I’ve been mystified when hearing people refer to their hearing loss in percentages. “I have lost 37% hearing in my left ear.”

Since I was thirteen and had my first audiogramme, that is how I’ve been thinking of hearing loss. In decibels, presented as a graph of how loud a sound needs to be so I can hear it, at various frequencies. I’ve showed my audiogramme on Open Ears already but here it is again:

Steph Audiogram

As you can see, at 500Hz I don’t hear sounds below 50dB, but at 4000Hz (higher pitch sounds) my left ear has almost “normal” hearing, as I can hear sounds as soft as 20dB. As is the case for most people, my hearing loss is not the same at all frequencies.

Hence the mystification: how could one express this with only one number? And how would you convert decibels (a logarithmic scale, where 20dB is 10 times as loud as 10dB) into percentages?

Many months ago already, I wanted to write a blog post about this. I did some research, asked some people, and stumbled upon a formula which didn’t feel very convincing (maybe this one). At the time already, it seemed to me that there was more than one method, which kind of discouraged me from further investigation.

A couple of months back, there was a consumer advocacy piece on Swiss TV where they sent somebody with hearing loss to various audiologists to see what solutions where recommended (and at what price). The surprising part was that the “hearing loss” of the test subject, expressed in percentages, varied wildly from shop to shop.

Anyway, this put me back on track to figure out how on earth they converted audiogrammes to percentages. Despite hearing people talk about their hearing loss in percentages all these years, I’d never been given a percentage value myself for mine.

I roped in Pascal to investigate and thanks to him finally got some satisfactory answers. Here are my take-aways.

First, the proper way to describe hearing loss is the audiogramme. As one can guess based on the results of the Swiss TV programme and the discussion around Christina’s article about “cheating” the test, taking somebody’s audiogramme is a bit of an art-form, although technically it is a rather simple procedure. Done well, it should produce the same result independently of who is measuring it (assuming your hearing is stable). This is, by the way, my personal experience with my audiogramme, done and redone over the years by three doctors and at least as many audiologists.

Second, there seems to be no end of formulas to “convert” audiogrammes to percentages, even in the United States alone (now extrapolate that to the rest of the world). And the results vary. According to one method, I have “25.3%” hearing loss. According to another, the one used by the doctors in the Swiss TV programme (CPT/AMA table reproduced below), I have “48.7%” in one ear and “40.7%” in the other.

AMA/CPT Table

Does this really mean anything? Does it make any sense to say I am missing “roughly half my hearing” or “a quarter of my hearing”? The first formula uses a kind of weighted average where you multiply the “good ear” by 5 — why on earth by 5? Quoting the article I just linked to: “Notably, while a five-to-one weighting is common among hearing impairment calculations, there is no research basis for this particular proportion.”

Third, again referring to the very interesting discussion in the same article, the need for a simple way to express hearing loss “objectively” seems to have its roots (at least some of them) in the compensations for work-related hearing loss. If you’re going to give money to a worker because of hearing lost on the job, there has to be an objective and simple way to determine how much. Which, when we realise that even an audiogramme is a rather poor indicator of the real-life impact of hearing loss. Two people with similar audiogrammes may feel differently impaired in their life by their hearing loss. Quoting again:

Few studies have found evidence for any of the several arithmetic hearing loss calculations in current or recent use in the US, as an effective measure of real-world hearing difficulty. More significantly, a literature review was unable to identify any study that has used appropriate statistical methods to evaluate the relative strength of association between these hearing impairment calculations and self-report measures.

Well, there we are. Measuring hearing loss is a hairy affair, and percentages don’t seem to me a very useful way of expressing it, as the calculation methods vary, seems sometimes pretty arbitrary, and apparently don’t correlate well with the real impact hearing loss has on our lives.

Similar Posts:

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!

Similar Posts:

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.

Similar Posts:

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.

Similar Posts:

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!

Similar Posts: