Category: My projects

Things I have done or am doing. Growing set of subcategories.

What Is Waiting For Us Around The Corner [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 days ago I stumbled upon a Forbes article about 4 game-changing technologies for the deaf and hard of hearing. I read it with interest, as I keep rubbing shoulders with the tech/startup world, and the moment it intersects with hearing technology, I immediately wonder what the technological future for hearing-impaired people like me might look like (remember my excitement about mimi?)

Without being an expert on either innovation or the hearing aid industry, here’s what I see when I look around. There are startups, like mimi, who approach issues from original angles, and clearly try to disrupt the market. But big companies innovate too.

future-of-hearing-technology

Over the last year or two, for example, we’ve heard a lot about Made for iPhone hearing aids, that will connect directly to your iPhone without a streamer (there’s a price though, not least a battery life of 2-3 days).

Also featured in Yahoo News’s game-changing wearable devices, Phonak’s Roger Pen, a versatile device that makes hearing in difficult situations much easier. I have yet to test it (soon, hopefully!) but I know a bunch of deaf students who swear by it. Less conducive to attention-grabbing headlines than “bluetooth hearing aids”, but maybe more important, there is also Venture, the new platform for Phonak aids. This can seem “softer” innovation, as it is “the next version” (after Quest, which I also tried), but if it is so good you fall asleep with your hearing aids on and forget to use your programmes, isn’t that quite incredible? Not to forget Lyric, a truly invisible hearing aid that you wear 24/7 and change every few months.

Anyway. Back to the article that got me writing today, and the players it showcases, along with my somewhat skeptical comments.

We have MotionSavvy, a tablet and software that translate sign language into spoken language in real time. This sounds really exciting, but can it really bridge the deaf and hearing worlds? I don’t sign, so I’m not certain of the implications of carrying a tablet around and signing with one hand. Also, I know that facial expression is an important part of sign language — will MotionSavvy manage that? I’d be interested in feedback from people who use sign primarily to communicate on how “real-life-useful” this seems to them. From the technology point of view it’s clearly exciting, though. (Update: two MotionSavvy founders + other employees are deaf, so I’m reducing my skepticism a few notches and increasing my enthusiasm about the project — “scratch your own itch” is always a selling-point for me.)

Then there is Solar Ear, which is about getting solar-rechargeable batteries in hearing aids for developing countries. We’ve written a few posts here about the Hear Haiti Project, and I’m certain that in addition to hearing aids the volunteers with the Hear the World Foundation must be bringing many many packs of batteries with them in their luggage. So, clearly, batteries that can be recharged with solar power sound like a great advance. However, there are reasons we’re not already widely using rechargeable batteries in hearing aids. This is above my pay-grade, but I did peek at their specs for the 312 battery (those I use), and I see it’s Ni-MH, which I read in the other article suffers from issues like the memory effect and capacity fading. Have they found a way around this, or do they simply design a hearing aid that can deal with these issues?

Third, ISEEWHATYOUSAY (video). This is a speech-to-text device. You speak a message into your end, and the message appears typed on the other person’s device. This is the less convincing one for me, because I don’t see how it is very different than dictating a text message into your phone for the other person.

Last but not least, in the vein of pimping your hearing aids, Hayleigh’s Cherished Charms. Hayleigh started drawing hearing-aid jewellery when she was little to encourage her classmates to stop hiding their hearing aids behind their hair. Now 16, Heyleigh runs a proper business selling her charms, complete with Etsy store!

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.

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.

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.

helenkeller-940x492_062015

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.

What Are These Hearing Loops? [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 couple of weeks ago, Angie wrote a post chronicling her repeated failure to find functional loops so she could try out her newly-activated telecoil. I was curious, as I’ve never used a loop myself. I’ve seen the signs, of course: the white ear on blue background with a T next to it. But until my recent last visit at Phonak headquarters, I wasn’t even certain my hearing aids had a telecoil (they do).

It seems I’m not alone in being mystified/uninformed about loops, as the many questions on the Phonak Facebook page testify.

So. What are these hearing loops?

what-are-loops

If you’ve been reading this blog for a while, you might remember me mentioning streamers like the Compilot Air or the M-DEX. What these streamers do is they transmit sound from an audio source (typically, your phone) directly into your hearing aids. Your hearing aids are basically working like “in the ear headphones”.

Induction loops allow the same kind of experience — without the streamer and in a specific place.

Here’s one of the many articles on hearing loops I was reading this morning, perfect if you’re in a geeky state of mind. The loop is actual wiring that produces an electromagnetic field which is “captured” by the telecoil in your hearing aids and transformed into sound.

This means that if you’re at a theatre that is equipped with a loop, you can put your hearing aid on the T-coil programme, and lo and behold, you’ll hear the audio that is playing directly in your hearing aids. Same thing at the till when you’re buying your train ticket — instead of struggling to hear through the glass and the crappy loudspeakers, you can hear the teller directly in your ears.

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.

Programmes: Want Them But Never Use 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.

When I got my first pair of hearing aids, I was hesitating between a smaller and slightly cheaper model, and a somewhat larger and more expensive one. I honestly wasn’t sure the sound quality was better in the more expensive one. I thought it was, but I wasn’t sure.

What tipped the balance was that the more expensive hearing aids had a button that I could use to switch between programmes. And I wanted that. I was frustrated by the lack of control I had as a user on the hearing aid settings, and so the idea of having programmes I could switch between gave me something to hang on to.

programmes-make-me-feel-more-in-control

Normal, noisy environment, quiet environment, mute.

When I tried Phonak Quest and then Venture, I got extra programmes. I was super happy! My current line-up is something like: normal (AutoSense), calm environment with nothing fancy added in, super zoom for loud environment, 360 zoom, speech in wind (for sailing) and music. Mute is in addition to all that. And the “normal” setting itself actually contains a whole bunch of programmes that the OS switches to automatically.

In reality, I almost never use my programmes. I do use mute (when working in a café, I’m happy to “turn the sound off”, or in public transport), but the programmes? The only times I really use them is when I’m struggling, and this usually results in me cycling through the programmes without really finding anything more satisfying than the initial setting.

For me this means two things:

  1. the automatic programme (AutoSense) is doing a pretty good job selecting the most appropriate setting for the acoustic situation I’m in, and as a result I’m rarely in trouble hearing;
  2. my desire for programmes has more to do with my peace of mind than with my actual necessity for them — something I suspected since the beginning; it reminds me of the disconnect between what you think will make you happy and what actually makes you happy…

If you have programmes and actually use them, I’d love to hear about it!

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.

When Do You Wear or Remove Your 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.

As somebody with mild/medium hearing loss, I guess wearing hearing aids are more of a choice than a necessity for me. I mean, I functioned without them for nearly 40 years. Today I wouldn’t give them up for anything in the world, of course, and I really prefer wearing them for anything resembling human interaction. But I can get by without. (An audiologist I had a chat with one day told me I’d be surprised at how people with much more hearing loss than me “get by just fine” without aids. Anyway.)

So, when do I wear them, when do I remove them? As a general rule, I wear them when I leave the house. (My cats aren’t all that talkative.) I remove them when I get home. Since I got my V90 aids though, I often forget to remove them when I get home.

I don’t wear my hearing aids to watch TV.

skiing-022515-940x492

I’ve been watching TV so long with headphones that having “ambient” sound on actually makes me self-conscious about bothering my neighbours with it (this is Switzerland). I used to always remove them to listen to music or podcasts. Now that I have the ComPilot Air II I sometimes keep them in (more for podcasts than music, with open tips there are frequencies missing for the music). If I’m travelling or wandering around on my own and not really expecting to interact with people I might take them out, too.

At judo training, I usually keep them in for warm-up and maybe the first rounds of “light” practice. Then I remove them so that I don’t have to worry about paying attention to what’s going on around my ears.

For skiing, I keep them in, despite the helmet. With my old Widex aids I’d given up on that (they really didn’t cope well with the helmet), but my current ones are fine. When driving, I sometimes wear them, sometimes not (depends if I was wearing them just before taking the wheel or not, I guess).

I also ended up removing my hearing aids once at a very noisy party. Even with the highest “speech in noise” setting, I actually managed better without them. But that was really an exceptional situation.

What about you? Do you put them in first thing in the morning and take them out last thing at night, or are you like me, sometimes in, sometimes out? And when? I’m curious to hear how other people do this. I suspect our wearing vs. not-wearing habits are also linked to how much hearing loss we have.

So Many Failed Fittings [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.

Again and again, when I talk about my hearing loss and my role as Open Ears editor, people tell me about their relative, acquaintance, or friend who has hearing loss of some degree, got hearing aids, but never wears them. This is a well-known problem in the industry, of course. I haven’t done checking out the existing research on the topic, but after an umpteenth discussion — and a failed fitting in my history — I do have a few thoughts to share.

failed_fitting

If I go back to my personal experience, there was a major difference between my first (failed) fitting and the one that got me wearing hearing aids on a daily basis three years ago: the first time, I was sent home with “perfectly tuned” hearing aids and that was it. In my memory (though it might be failing me), no follow-up appointment. The second time, I was sent home with barely amplified hearing aids and clear follow-up instructions.

Of course there are other differences. I was 13 at the time, 25 years older at my most recent fitting. Technology had evolved. I’d had time to accept the fact I have hearing loss. As a teenager, I was “told to go”, whereas as an adult, I made my own decision.

But I can’t help but think that sending newly fitted people home with hearing aids on “full blast” is a bad idea for a first fitting. Everything I know about habituation and resistance to change screams against doing that. Baby steps is usually what it takes for lasting change, rather than huge sweeping revolutions. Remember those new year resolutions you never keep? Yeah.

Have you been fitted with hearing aids that stayed in a drawer, or do you know somebody in that situation? I’m curious as to what other people’s hypotheses are regarding the reasons for all these failures, I have to say.