Imagine a world where every newly constructed building would include accommodations for those with hearing loss, including acoustically-friendly designs, captioning and the latest hearing assistive technology.
While it seems like a lofty goal, one 16-year-old from California is encouraging his community to do just that.
Johnny Butchko knows too well what it’s like to not be able to understand people in public spaces.
“Every day that I am in school I have difficulty hearing in the halls, the cafeteria and the courtyards, because there is a lot of background noise,” he said.
Johnny was born severe-to-profoundly deaf. Equipped with Phonak Naida Q 50 UP hearing aids, he uses an FM system and captioning in the classroom, and a caption phone at home, but in public spaces, the feeling of being lost in translation is all too common.
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.
One of the things I love about being part of this community is the international perspective. It’s a real eye-opener learning about the experiences of fellow hearing aid users in other countries. In this post, I’d like to explore the issue of a lack of ‘follow up support’ for adults new to hearing aids here in the UK and I would love to know if you have a different experience where you live. Of course, there may be some great local initiatives in the UK that I don’t know about so, if you have some examples of good practice, this would be a great place to share them!
The 8th to 12th September is Lipreading Awareness Week in the UK and so my post is in honour of the Lipreading tutors around the world. Thank you for all you do!
When I got my first analogue aid, I shoved it in a drawer because it amplified everything and the sounds of cutlery or a running tap scared the living daylights out of me. Nobody checked up on me and it was left up to me to ask to be referred to a different hospital where I’d discovered they were (at that time) trialling the use of digital hearing aids.
At the second hospital, I was given an ‘in the ear’ aid and told to ‘build up use gradually from an hour a day to all day’. The hearing aid was set far too loud and the audiologist refused to turn it down to make it bearable (let alone comfortable) and so, it too got shoved in a drawer never to see the light of day again.
Since my last visit to the Phonak headquarters I keep mulling on the conversation I had with Solange about fitting and pricing strategy. We know hearing aids come in different price ranges, and the benefits they provide to the wearer change as you move up in technology. These variations in price are not isolated to a specific piece of hardware or software, but reflect the overall experience the wearer receives when using them in more complex listening environments. And that, ultimately, is what we pay for, as hearing technology users: a better life experience.
“I don’t hear very well.” This is what I’d been saying since I discovered, age 13, that I didn’t hear very well. “I don’t hear very well.” My hearing was checked, I was given the verdict “yeah, so you have some hearing loss, we’re going to give you hearing aids”, and sent to an audiologist to be fitted. They took some measurements, filled my ears with pink stuff, and next time I went there I left with a rather big pair of skin-coloured inside-the-ear aids.
They felt uncomfortable, I could hear background noise, the world was too loud, and girls at school made fun of me. I wore them two days, maybe three, then put them back in their box, never to be taken out again. I decided that it wasn’t that bad after all to “not hear very well”, and that I would cope.
And I did, for the next 25 years.
In 2012, after a couple of years of “getting there”, I finally decided to get fitted again. My brother had got hearing aids a few years before and what he told me of the process and the changes in his life really encouraged me. (We have similar hearing loss, hereditary.) I shared some of my thoughts on my blog right after getting my hearing aids (“A Week With My Superpower”) and a month or so later (“More About Hearing Aids…”).
Nearly two years later, my hearing aids are part of my life, and I wonder why I waited so long. I still end up saying “I don’t hear very well” every now and again, but now I can add “I’m not wearing my hearing aids just now,” or “Even with hearing aids, I don’t hear as well as you.” The impact is different!