Author: Stephanie Booth

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.

A Post About Many Things [en]

[fr] Des choses en vrac!

It happened again. As time goes by and things to say pile up, the pile weighs heavy on my fingers and blog posts don’t get written. Been there, done that, will happen again.

First, a heartfelt thanks to all the people who reacted to my post about being single and childless, here and on facebook. Rest assured that I actually rather like the life I have — it’s full of good things. But it’s very different from the one I imagined. I will write more on this, but exactly when and what I am not sure yet. Also, one can grieve not being a mother but not want to adopt or be a single parent. There is a whole spectrum of “child desire”, and it’s not at all as clear-cut as “no way” and “I’ll do anything”. Check out “50 Ways to Not Be a Mother“.

Most of my working hours are devoted to running Open Ears and a series of digital literacy workshops at Sonova. I’m still way behind on my accounting.

Tounsi (and his pal Quintus) went to see an animal behaviour specialist, because I was starting to get really fed up cleaning after Tounsi’s almost daily spraying in the flat (thankfully his pee doesn’t smell too strongly and I’m good at spotting and cleaning). I plan to write a detailed article on the experience in French, but it was fascinating and I regret not going earlier. As of now, spraying is pretty much under control, and I’m in the process of finally chucking and replacing two pieces of furniture which are soiled beyond salvation.

What I learned:

  • outdoor cats can also need stimulation (play, hunting…)
  • even a 20-second “play session” where the cat lifts his head to watch a paper ball but doesn’t chase it can make a difference, if this kind of thing is repeated throughout the day.
  • making cats “work” for their food can be taken much further than feeding balls or mazes: change where the food is all the time (I wouldn’t have dared do that, didn’t know if it was a good idea or not, but it is); hide kibble under upturned yoghurt cups; throw pieces of kibble one by one for the cat to run after (another thing to do “all the time”); use an empty egg-box to make kibble harder to get to; etc. etc.
  • clicker training for things like touching a reluctant cat: my baby steps were way too big and my sessions way too long
  • Feliway spray is way more efficient than the diffusor (at least to stop spraying)
  • cleaning with water (or water and neutral soap) is really not enough, there are products to spray on soiled areas which break down urine molecules (even if you can’t smell anything, the cat can)
  • spraying can simply be a “vicious circle” — it seems to be the case with Tounsi: he sprays in the flat because it’s a habit, and because there are “marking sign-posts” (ie, smell) everywhere

While we’re on the topic of cats, I’m playing cat-rescuer and looking for homes for Capsule and Mystik (together, used to living indoors but that could change) and Erika (has been living outdoors for 5 years but super friendly).

I don’t think I mentioned StartUp podcast or Gimlet Media here yet. Anyway: want great podcasts? Listen to Startup, Reply All, and Mystery Show. And in addition to Invisibilia and those I mention in that article, grab Planet Money (I swear, they make it interesting even for me!), Snap Judgement (great storytelling), and This American Life.

Reading? Spin, Axis, and Vortex, by Robert Charles Wilson.

Something I need to remember to tell people about blogging: write down stuff that’s in your head. It works way better than doing research to write on something you think might be interesting for people.

Procrastinating and generally disorganised, as I am? Two recent articles by James Clear that I like: one on “temptation bundling” to help yourself do stuff while keeping in mind future rewards (delayed gratification, anybody?) and the other on a super simple productivity “method”. I read about it this morning and am going to try it.

Related, but not by Clear: How to Get Yourself to Do Things. Read it, but here’s the takeaway: when you procrastinate, the guilt builds up and you feel worse and worse. But as soon as you start doing it gets better. And so the worst you’ll ever feel about not doing something is just before you start. Understanding this is helping me loads.

Enough for today. More soon, or less soon.

Thanks to Marie-Aude who gave me a nudge to get back to this blog. I’d been in the “omg should write an article” state for weeks, and her little contribution the other day certainly played a role in me putting “write CTTS article” in my list of 6 things for the day. Merci 🙂

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.

The Right to Grieve — And That Means Being Sad [en]

[fr] Avez-vous remarqué comme personne ne veut qu'on soit triste? La tristesse est néanmoins une émotion nécessaire, celle qui nous permet d'accepter une perte, d'en faire le deuil, et de pouvoir continuer à avancer à travers et au-delà de la peine.

Have you noticed how nobody wants you to be sad? Tell people around you that you’re sad, and immediately they’ll want to cheer you up.

Sadness is not bad. Sadness is necessary. It is through being sad that we are able to accept our losses and move on. That is what grieving is.

Our friends don’t want us to feel sad, because they don’t want us to suffer. But refusing to be sad and to grieve brings along a lot of suffering — certainly more, in the long run, than the pain of sadness.

Sadness is not depression. Unprocessed grief can lead to depression, though.

Sadness is the feeling of loss.

A person who is experiencing loss needs the courage to feel sad, and in a world which wants to shove sad under the carpet at the first opportunity, that can be far from easy.

What is valued is staying strong in the face of loss, grief, catastrophe. Not collapsing. Not showing how much pain we’re in.

But what we need when we’re sad and in pain, most of the time, is support so we can dare to feel all this. A safe place to be heard, recognised, and not judged. Love and acceptance that does not desperately want to save us from our emotions, but on the contrary, regard them as part of ourselves and our journey through life.

To grieve and to move on from all the various losses in our lives, all the nevermores, we need to be able to be sad. It is a good thing.

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.

Coming Out as Single and Childless [en]

[fr] Quarante ans, célibataire, sans enfants. Un deuil à faire, et une porte à ouvrir pour en parler.

I turned 40 last summer, and it hasn’t been easy.

To be honest, I kind of expected it to be rough: my mother died when she was 40, 30 years ago, and in my mind 40 has always been a kind of “cut-off” age for having children. But it’s been (and still is) much more of an upheaval than I guessed.

Simple Flower, La Tourche

If you follow me on Facebook or maybe on Twitter, you certainly noticed I shared a slew of articles about childlessness over the fall and since then. This summer plunged me into a grieving process I’ve been doing my best to avoid for years — and am still resisting. It’s not a coincidence that my blog has been so silent.

As I started researching childlessness, and talking a bit around me, I realised that this is something about myself I have never really talked about in public. Or talked about much, full stop. Same with being single. It’s not something I’m really comfortable discussing publicly. Which is kind of strange, as I’m a very public person. So what is it about the childlessness and singleness that keeps me quiet?

Some have suggested that it’s because it’s personal. But I talk about a lot of personal stuff. It’s painful, too. Maybe it’s the grief? Not either: over the winter of 2010-2011 and the months that followed, I wrote a series of extremely personal articles dealing with the death of my cat Bagha, and the grief I was going through.

And I understood: it’s shame.

Failing to have a partner or children, when it’s what you want, is shameful — particularly for a woman. The grief of childlessness and singleness is something that we have trouble dealing with, as a society. Chances are you’re thinking “wait, 40, everything is still possible, the miracles of medicine, you have plenty of time; you’ll find somebody, all hope is not lost”. Do you see the problem here? I will write more on the subject, but for the moment please just take it as given that my chances of ever being a mother are vanishingly small — and that the best I can do is grieve and get on with my life, “plan B”.

I have kept quiet about this, and shoved it under the carpet, because it’s an issue that’s loaded with shame. And as such, it stands to be pointed out that the grief of childlessness, and to some extent singleness, is a taboo subject. People do not want to face it. When bringing it up, it is automatically negated (“there is still time”, “children are overrated”, “look at the great life you have”, “you probably didn’t really want children that much or you would have them”). We don’t know what to say. We have scripts for losing a loved one. Even a pet — when Bagha died there was an overwhelming show of support and affection around me.

But childlessness is another can of fish.

Grief has a public dimension. To grieve, we need our pain to be recognized from the outside. Grieving can not be done in complete privacy. That’s where it gets stuck.

As much as I didn’t want to, I realised that I was going to have to start writing about this. Because this is how I process. I cannot do it alone: I need you too.

I’m not where I was back in July. Things are moving along, slowly. I’ve been talking to friends, and joined an online community of childless women for support. Read about dozens of stories parallel to mine. And though a part of me still rabidly refuses to accept I will continue my life without children, tiny bits of acceptance are sneaking in. I first drafted this blog post back in December, and getting it out of the door today is part of the process.

My name is Stephanie, I’m 40 years old, single and childless — and it’s not what I wanted for myself.

Here’s the post on Facebook.
Also published on Medium.

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!

Disconnection [en]

[fr] Certaines formes d'écriture ne peuvent plus se faire déconnectée, pour moi.

I’m at my chalet. Cats are curled up on the bed and I have a nice cup of tea ready. There is no wifi here. Cellphone reception is extremely patchy — and cellular data, when it works, is excruciatingly slow and unreliable. This is my “disconnected place”.

There is a lovely café in the village which offers free wifi as well as delicious home-made syrups, smoothies, and cakes. And tea for winter, of course. I go there to work and connect with the world.

I use MarsEdit to edit and write blog posts offline. As you can imagine, this is not something I do often. But this time around, I had quite a few to work on for my client, and I figured I could also do some of my work at the chalet.

While I was at it, I updated the settings for my blog (yup, still in server-move limbo) so that I could write an article or two. Everybody knows that being offline is great for productivity, particularly for writing.

Well, it turns out that there are certain types of writing for which it isn’t all that great. A lot of the stuff I write about here is nourished by things I’ve read online somewhere. I want to include links, check sources again to make sure I remember correctly what I have read. Search for more information.

I have become so used to writing/blogging plugged into the internet that I forget how much I rely on this extension of my mind that the network has become for me. (See, I’m sure there is a good piece somewhere to link to about that — but as I’m writing this offline, I can’t dig it out for you.)

I don’t think this is a bad thing. My brain still works. I haven’t lost the ability to write, and more importantly, to think. But I find myself in the situation where I am so used to functioning with a given tool that I forget its absence will prevent me from doing certain things.

The article I wanted to write is about doing what we want versus doing what we have to do. I’ve been through a series of realisations on that topic, and I want to be able to reference them and map them out for — maybe with the same sources, somebody will come to the same realisation, and my article will have been useful. Oh well, I’ll write it another time, when I have access to the internet.

Maybe I just have to remember that blogging/writing is not something I should try do to when offline.

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.