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.

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Helen Keller Deaf-Blind Awareness Week [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.

Tomorrow marks the 135th anniversary of Helen Keller‘s birth. I remember being fascinated by Helen’s story as a young child, full of wonder at how she managed to learn to communicate although she was deaf and blind. (Thought she was born deaf and blind? Check out the myths.)

More recently, whilst exploring the d/Deaf/HoH world online, both out of interest as a hearing aid user and as “blogger-in-chief” of Open Ears, I came upon postings about Usher Syndrome, a rare progressive disease that affects both sight and hearing. They gave me a touch of the fear one could have about losing sight in addition to hearing, particularly if one uses sign language.

In 1984, President Reagan proclaimed the last week of June “Helen Keller Deaf-Blind Awareness Week” — an occasion to raise awareness about deafblindness and highlight the contributions of those who have this disability. It has since spread to some other anglophone countries.

As my contribution to this awareness week, I’d like to share two videos about young deafblind women with you.


The first is a documentary produced by and about Brittany, who has been deaf and blind since she was two. She walks us through her life at school and shares her feelings about her disability and relationships with others.

The second is from Molly, who has Usher Syndrome. She has actually set up a charity, the Molly Watt Trust, to advocate and raise awareness about the condition. In her video she tells us about the consequences of being both deaf and blind on her everyday life.

Both are well worth watching and show different faces of deafblindness. There are many others of course, not forgetting those who in old age see their senses fade away to the point where they can no longer make use of them.

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On s'habitue [fr]

[en] A few words on habituation and hearing aids.

billet rédigé à Trigance, le 2 août 2012

On a une capacité incroyable à s’habituer. J’y pense maintenant, alors qu’après une journée sans appareils auditifs (je faisais de la randonnée en montagne, toute seule), je range mes cheveux derrière mon oreille après les avoir remis. “Scritchhhh scrtichhh!” — le bruit maintenant familier de mes cheveux qui frottent sur le micro. Ça ne me choque plus. C’est normal. Je suis habituée.

En avril, lorsque je me suis retrouvée pour la première fois avec des appareils sur les oreilles (la tentative avortée de mon adolescence était “intra” ;-)), j’ai été immédiatement horrifiée par le bruit ambiant. Le bruit de mes vêtements, mes cheveux quand je tournais la tête, ma respiration, et surtout, quand j’essayais de ranger une mèche derrière l’oreille.

Heureusement, mon audioprothésiste ne m’a pas laissée longtemps avec ce réglage “optimal selon le fabricant” et a réduit de 8 décibels (!) mon amplification. Assez pour que j’entende mieux que sans appareils, et assez peu pour ne pas être trop gênée par le bruit de fond du monde (et le bruit de fonctionnement de l’appareil).

Si vous m’aviez demandé ce jour-là si j’imaginais un jour pouvoir tolérer ce bruit, je vous aurais probablement répondu “non”. (Bon, j’admets que sachant ce que je sais sur l’habituation, j’aurais probablement concédé que ça faisait partie du possible, même si je peinais à l’imaginer.)

Aujourd’hui, 5 décibels de plus qu’en avril (et un changement de modèle, la gamme d’au-dessus — bobo le porte-monnaie), ces bruits de frottement ne m’incommodent pas. Ni même le bruit de fonctionnement de l’appareil, auquel vraiment j’imaginais ne jamais pouvoir m’habituer, et qui à ma stupéfaction m’est même agréable — quand je l’entends: lorsque je mets mes appareils le matin, et lorsque je suis dans un environnement très silencieux.

Je m’habitue aussi à entendre mieux. Marrant, ça. Il y a des gens dans mon entourage avec qui j’avais une communication très limitée, et je me rends compte maintenant que c’est parce que je les comprenais très mal. J’ai maintenant pris l’habitude de pouvoir interagir confortablement avec elles.

Une catégorie de personnes avec qui c’est flagrant, ce sont les enfants. Je soupçonne que les adultes s’adaptent (peut-être sans s’en rendre compte) au fait que j’entends mal, mais que les enfants ne sont pas vraiment (encore) équipés pour le faire. Ils ne réalisent pas que j’entends mal. Ils parlent doucement, sans me regarder, sans avoir mon attention. Ce sont des enfants. Eh bien depuis que j’ai des appareils, j’ai réalisé que j’interagissais beaucoup plus avec des enfants (connus ou inconnus). La seule explication que je vois, c’est que je suis maintenant en mesure de les comprendre suffisamment pour avoir des échanges significatifs.

Si j’oublie de mettre mes appareils, je me retrouve soudainement dans des interactions où les paroles de l’autre atteignent mon cerveau sous forme de choucroute inintelligible. Il me faut quelques secondes pour comprendre ce qui “ne va pas”: j’ai oublié de mettre mes oreilles! C’est presque inimaginable pour moi de penser que je me suis débrouillée toutes ces années en entendant si peu. Bref, j’ai complètement perdu l’habitude d’entendre mal (enfin, plus mal que maintenant) et de devoir faire les efforts nécessaires pour compenser. Ça se sent d’ailleurs: si je suis sans appareils, mon cerveau fait la grève — je suis probablement moins performante (moins entraînée!) pour compenser.

On s’habitue donc à la présence de quelque chose: des appareils dans mes oreilles auxquels je ne pense plus, d’avoir un univers sonore élargi, comprenant le bruit du frottement de mes cheveux sur mes micros. Mais on s’habitue aussi à l’absence: absence d’efforts à faire, absence de difficulté. On s’habitue aux choses agréables, et aussi à celles qui le sont moins.

J’ai déjà parlé du rôle de l’habituation dans notre recherche du bonheur: c’est cette formidable capacité de s’adapter qui fait que nos circonstances de vie comptent pour si peu (un misérable 10% dit la recherche!) dans notre bonheur. Nos circonstances de vie? Le travail qu’on a, si l’on vit ou non avec le Prince Charmant, pouvoir s’offrir de super vacances ou la dernière TV écran plat, une jolie voiture, vivre dans la maison de ses rêves… Tout ceci est bien joli, mais on s’y habitue.

Quelques mois ou peut-être un an ou deux après avoir fait l’acquisition du dernier objet de nos convoitises, on l’a intégré à notre vie et on n’y prête plus attention. On s’y est habitué. On se marie, on est sur le petit nuage rose, puis ça devient “normal” et si on n’y prête garde, notre bonheur ne s’en nourrit plus. Dans le cadre du couple, on connaît bien le problème de la “routine”: ce n’est que ça, la fameuse habituation. Pour éviter de s’habituer aux bonnes choses, il y a un effort conscient à faire.

On s’habitue aux bonnes choses, et on peut trouver ça dommage, mais le revers de la médaille, c’est qu’on s’habitue aussi merveilleusement bien aux mauvaises choses. Pourquoi faudrait-il s’habituer aux mauvaises choses? Pour pouvoir continuer à aller de l’avant quand le malheur frappe. Pour ne pas être terrassé par l’adversité. Pour survivre. Des exemples? Il y en a partout. Ce sont les cas où l’on dit que le temps fait son oeuvre. Après la mort de son conjoint ou d’un être cher, la vie reprend un jour le dessus. Lorsque notre corps fonctionne moins bien qu’avant (par accident ou maladie), on finit par s’y habituer. Heureusement! Imaginez si chaque jour était comme le lendemain de celui où le malheur débarque! La vie serait insoutenable!

Tout comme la résistance au changement est une réaction naturelle, celle de s’y habituer l’est aussi. Il faut se donner le temps, et souvent le temps suffit. (J’en conviens que ce n’est pas toujours le cas, mais ce sera le sujet d’un autre article.)

Etre conscient de sa capacité naturelle à s’habituer et lui faire confiance permet d’aborder le changement avec plus de sérénité, lorsque l’on sait que l’on devra l’accepter — ou qu’on le désire. Ce n’est pas très compliqué, et on s’économise beaucoup d’agitation inutile.

A quoi vous êtes-vous habitué?

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A Week With My Superpower [en]

[fr] Une semaine avec mes super-pouvoirs qui me permettent d'entendre aussi bien qu'un chat 🙂

Last Friday, I stepped into a small shop in the mall near the motorway exit. I walked out with two magic amulets. The moment I started wearing them, I started hearing sounds like I had never heard them before.

I have a superpower: I can listen in on conversations I am not taking part in; I can hear the noise the cat litter makes as it trickles back into the box when I scoop things out; I hear my cat lapping water in the next room, and people moving in the other flats; birds sing so loud and clear they seem to be perched on my shoulder; the rustle of a paper bag or my clothes fills the whole room; I have the ears of a dog.

Best of all, instead of having to reach out to grasp the sounds of speech when I’m talking with somebody, the sound comes to me, crystal clear — right into my ears. I am no longer trying to catch others’ words. They find me, even when I’m not expecting to be talked to, even when I’m not looking at the one producing the words.

OK, I lied a bit — the amulets are not magical, they’re technological. They look like this:

Hearing aid.

(I am thinking of swapping metal grey for pink, though — that part isn’t visible, of course, but I like the idea.)

Those of you who know me well enough know that I do not hear well. I never had. My hearing is particularly deficient in the frequencies used by speech. (I’ll post my audiogram here later, it’s at eclau and I don’t want to walk down the whole two floors to get it ;-)) After a disastrous attempt at getting me hearing aids when I was fourteen (I wore them all of two days) I’ve finally decided to give it another go — and so far, I’m delighted.

I’m actually starting to realize how deaf I am. Or how badly I hear. (Pick your expression of choice.) The audiologist initially programmed the hearing aids to their optimal setting, based on my audiogram. I was shocked. When he spoke to me just after the setting process, I instinctively looked for the microphone he was speaking into. He wasn’t speaking into a microphone.

Imagine you arrive early at the stage, and the band playing the gig is rehearsing with being plugged in. And suddenly somebody plugs in the mikes and the amps. That’s what it felt like. “You have got to be kidding,” I told him. “It’s way too loud.” He told me he was going to run another test to confirm, and as he turned back to the keyboard his pen escaped his hands. You know the sound a pan makes when you drop it on the kitchen floor? Well, that’s pretty much how much noise his pen made.

After running the second test, he confirmed that the settings were right. I was hearing sounds the way somebody with normal hearing hears them. So loud! Way too loud! This is of course a common reaction, and the audiologist always decreases the settings to something more tolerable so the new wearer of hearing aids can get used to them. Usually, he decreases them by 4dB — in my case, by 8dB. And he also reduced amplification of weak sounds to cut out as much background noise as possible.

Given my strong initial reaction to the “optimal” setting and the traumatic teenage failure behind me, we weren’t taking any chances.

One thing I was really worried about was the physical discomfort of having something in my ear. My memory of my first attempt at wearing hearing aids is that they were hugely uncomfortable (of course technology has evolved in 25 years, but still!). I also know I cannot stand the completely occlusive inside-the-ear earbuds — I bought a pair once, listened to music 30 minutes with it, and had to bring it back. It hurt too much.

My audiologist recommended dabbing the part that goes inside the ear with sweet almond oil. It works wonders. The first day I had to remove my hearing aids a couple of times because my ears were tickling. After 2-3 days, no more, though I was happy to remove them at the end of the day. Now, I almost forget about them. I’m actually almost worried that at some point I’ll stop noticing them so much I’ll hop into the bath or the shower without removing them… oopsie.

Even with a setting 8dB below what I should have, it makes a stunning difference to me when I’m talking with people. I actually understand every word. I don’t need to guess anymore. I might even stop watching movies with subtitles, who knows! I keep hearing sounds that I don’t know how to identify yet, so I’ll often end up looking all around me in the bus or street to try to figure out what it is I’m hearing. A friend commented that what I’m going through is probably a bit similar to what happens to babies when they realize that sound is stuff they’re hearing. It’s not all pleasant, of course (loud drunk teenagers in public transport are even louder), but overall I am already at a point where I do not want to not wear them. I’m hooked.

What amazes me, though, is to think that this is still way below how you (well, most of you reading this) hear. I’d love to be able to edit a recording based on my audiogram to make it sound to “normal hearing people” the way it would sound to me. And I’m looking forward to getting sufficiently used to my current settings that we can turn the volume up even a bit more!

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