Tag: deaf

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:

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.

Similar Posts:

The Secret Deafie [en]

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

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

Secret Deafie Limping Chicken

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

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

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

Similar Posts: