I Never Lost My Hearing

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. Continue reading “I Never Lost My Hearing”

Do You Fear Hotel Fires?

Whenever I see a news report about a hotel fire, my blood runs cold. I have to travel regularly for work, with overnight stays, and I worry a lot about what would happen to me if there was a fire while I was asleep. (This is a fear which will be alleviated when I get a Hearing Dog but in the meantime, it’s a real concern of mine. It also drove me to found my business Access Solutions.)

Deafgard by Fireco
Image of Deafgard with kind permission of Fireco

Without my hearing aids — such as when in the shower or while sleeping — I wouldn’t be alerted by a standard fire alarm, so I need something which flashes (in the bathroom) and something which flashes/vibrates when I’m in bed.

Whenever I go to stay in a hotel, I always ask for a flashing/vibrating fire alarm and when they can’t provide one, I worry about what would happen if there was a fire.  Would someone risk their life to come and get me?

When I give talks (to hearing people) about living with hearing loss, I often remark that when you’re diagnosed with hearing loss or when you’re fitted with a hearing aid, you’re not then taken to another room and shown all the assistive technology that’s available to you. (Well, not in my experience anyway!) Continue reading “Do You Fear Hotel Fires?”

The Hearing Loss Spectrum, Between the Hearing World and Deaf Culture

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? Continue reading “The Hearing Loss Spectrum, Between the Hearing World and Deaf Culture”

Friends, Lovers, and Reclaiming STEM

“Christina, how do you feel about Math and Science?”

My good friend, Ben, had asked me this question while I was freaking out about my then-boyfriend, Noah—a gorgeous, brilliant mechanical engineer who enjoyed springing questions about math and science on me without warning.

These questions, regardless of how good I felt, always made my heart race and waves of nausea hit me. Every time Noah would try to get me to guess answers to questions about the pressure that lifted planes, or a concept relates to calculus, I could not escape the feeling that I was being tested to see if I was “smart enough” to be his girlfriend.

Initially, I imagined I panicked at Noah’s questions because I believed, as a hearing-impaired artist with no money or college degree, that I was not good enough for someone like him. Ben, a therapist in-training, listened to my panic long enough to see that it had nothing to do with Noah. I knew Ben hit something much deeper when I could feel my whole body groan at the words “math and science.” Continue reading “Friends, Lovers, and Reclaiming STEM”

Hearing After Hearing Aids

How did you lose your hearing?

For some, that question may be considered intrusive and personal. But for most cochlear implant users, it is a great way to start a conversation with another implant user when you meet for the first time. And when the question comes from somebody who doesn’t have cochlear implants, it’s a great opportunity to show off your technology. Allow me to explain.

I grew up with normal hearing, and always enjoyed music and foreign languages, in addition to my career as an engineer and all the geeky interests that go along with it. I met my future bride while studying Japanese. We used to alternate days, taking turns speaking each other’s language.

Nine months after we were married, I was in the shower one morning, and slowly came to the realization that the water wasn’t making any noise. My analytical engineering brain kicked into action, trying to figure out what was wrong with the water. After exhausting all of the possible water problems, I realized that it was probably making its usual sounds, and that I wasn’t able to hear it.

I spent the next dozen years holding an FM microphone, which was connected to a really powerful hearing aid. This helped me read lips a little bit, but I could only use it for about an hour a day before becoming exhausted. Continue reading “Hearing After Hearing Aids”

Helen Keller Deaf-Blind Awareness Week

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. Continue reading “Helen Keller Deaf-Blind Awareness Week”

Changing the Conversation: Design & Hearing

I have been a graphic designer for over 13 years in Chicago. I have worked with many interesting and diverse clients and never thought I would work for one “client” exclusively. Design isn’t just about making things pretty but about understanding a need, developing messages and clearly communicating these to people through different media and channels.

So why did I join a hearing aid manufacturer?

A former teacher of mine, Marcia Lausen, and one of her staff designers, a former classmate, contacted me about a potential in-house job at Phonak. They introduced me to their 10-month research of the industry and showed concepts they had developed at studio/lab, a design studio.

Their research informed The Phonak Gain Initiative (PGI). PGI is about changing the conversation and strengthening the relationship between hearing aid customers and their hearing care professionals. “The conversation” has been, and still is, about the struggles of being hearing impaired, the fear of not being “normal”, the sadness of losing one’s hearing and other health conditions that can be associated with hearing loss. Continue reading “Changing the Conversation: Design & Hearing”

What Are These Hearing Loops?

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?

Continue reading “What Are These Hearing Loops?”

Training and Straining

A few weeks ago I wrote about how I take my ears on and off all the time in my day-to-day life, and Beverly commented something that hit home:

The key to hearing better longer is to keep your auditory nerves and brain active and NOT let them atrophy. Through the use of hearing aids you’ll enjoy a better quality of hearing longer. Put them in and forget about them.

It reminded me of my father’s first time with glasses. Something like twenty years ago, he had to begin to wear glasses; at the normal age when eyes become less flexible and arms need to be longer and longer because you can’t adjust your eyesight the way you did when you were younger.

His first reaction was “Oh wow, it’s better” and then went on to “Actually no, wait now, we have to talk it through again”. Ring any bells?

Continue reading “Training and Straining”

Participate in a Co-Creation Workshop to Design Future Hearing Aids

Have you ever wondered how hearing aids were designed? One step in the process is getting designers and hearing aid users together in a co-creation workshop. You can be a part of this.

At Phonak, the person who manages design of new products is Martyn. He works with the top design and innovation experts from around the world to create the hearing aids of the future: look and feel, colours, interaction — pretty much all that makes our hearing aids quasi an extension of ourselves, in addition to processing sound in a way that improves our daily lives.

I spent some time on the phone yesterday with Nataliya, an independent innovation consultant who is going to be running some of these co-creation workshops in New York as part of the design process for the next generation of hearing aids. Continue reading “Participate in a Co-Creation Workshop to Design Future Hearing Aids”