My fight to make cinemas deaf-friendly

Until recently, I only went to the cinema two or three times a year. Going to watch a movie at the theater has always been a ‘luxury’ for me. With my hearing loss, and the lack of subtitled showings, it just wasn’t possible. It also wasn’t fair.

Most families have the choice to go to the cinema wherever and whenever they desire. Our options were pinned down to luck, and the hope that the ‘yourlocalcinema’ website would announce a subtitled showing would be playing.

A couple of months ago, I finally had enough! Continue reading

Cochlear Implants: The Big ‘Switch On’

After Harry had his cochlear implant operation I found myself flooded with messages of congratulations that Harry could now hear. Unfortunately, of course, this wasn’t quite the case just yet.

The operation was just the beginning and without the external hardware Harry still wasn’t able to access sound.  It took a while to explain this to people,  and on top of it was the fact we had no idea how successful the op would be until his “magic ears” were activated. Continue reading

10 Misconceptions about Hearing Loss

Hearing loss is sometimes referred to as an “invisible disability,” because it’s not always obvious when people have hearing loss, and it’s not often talked about. Studies show that only 1 in 5 people who would benefit from a hearing aid actually uses one, and on average, people with hearing loss wait almost 10 years before they do something about it. Why? Sometime’s it’s related to cost, but other times it has to do with the stigma that hearing loss carries. People might associate hearing loss with getting old or don’t want to wear hearing aids because there are ugly.

There are a lot of misconceptions that people have about hearing loss. I think it’s important to be open about hearing loss and how it can affect people’s lives, both positively and negatively. Help break down the stigma of hearing loss!

Here are 10 misconceptions about hearing loss that you should know: Continue reading

Open Ears is now HearingLikeMe

We published out first blog post on Open Ears in February 2014, with the hopes of creating a community for people with various levels of hearing loss, who would be supported by the brand that they depend on for their hearing technologies.

Since then, we’ve heard personal stories of how to better communicate with someone with hearing loss, inspirational memoirs of people overcoming  their hearing loss to rediscover their passions,  cool hearing aid decorating ideas, field notes from Phonak volunteers fitting children with hearing aids around the world, advice on how to understand your audiogram, and much more.

We’ve laughed, we’ve shed a tear or two, and (most importantly) we’ve been immensely inspired by those of you who are being open about hearing loss, breaking down stigmas and being proud of using hearing technology.

As our community has grown, so have we, and in the process have decided to build a stronger platform for you.

That’s why as of today, Open Ears will be HearingLikeMe.

You’ll still be able to find the same personal stories from your favorite bloggers and continue to follow their journeys with hearing loss, but now you’ll also get the latest industry news, lifestyle trends, hearing aid tips, and have the opportunity to further personal connections and discussions on the Hearing Like Me forum.

We look forward to growing our community and continue to inspire – and be inspired by – those of you touched by the hearing loss community. We hope you grow, learn and discover ways to hear better than ever before.

See you soon on HearingLikeMe.com and make sure to let us know what you think.

Getting the groom on your good side: Tips for brides with single-sided hearing loss

I recently wrote a blogs post for Hearing Like Me, titled “5 ways to Accommodate Deaf or Hard-of-Hearing Guests at your Wedding,” and it got me thinking about my own wedding. The accessibility issue at our wedding wasn’t about one of the guests – it was about the bride!

In 2006, for me as a bride-to-be, my biggest concern was, “How will I be able to hear both the registrar and the groom during the ceremony?” Back then, I had reasonably good hearing in one ear and poor hearing in the other: positioning was everything. I didn’t want the celebrant to get to the part where they ask if anyone knows of any lawful impediment and me mistake the pause for the lull in conversation where I’ve missed being asked a question – and then say something like, “What did you say?” or “I do” at the wrong time. As a bride-to-be who had hearing loss, I had a lot on my mind. Continue reading

After hearing loss, Katherine Bouton finds new purpose in life

 

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Katherine Bouton is the author of “Shouting Won’t Help – Why I and 50 Million Other Americans Can’t Hear You.” and “Living Better with Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends… and Hearing Aids.”  She is a former editor at the New York Times where she worked on the NY Times Magazine and Book Review, and on the daily Science and Culture Desks.  Katherine is a frequent speaker to professional and hearing loss groups on hearing loss issues. Her blog  appears weekly at AARP online and also on her own site. She is a member of the Board of Trustees of the Hearing Loss Association of America.

I very much appreciate when someone responds to my blog pasts. Recently I got a very nice response from Katherine Bouton about my experiences returning to performing music again. We originally met via Facebook as readers of each other’s posts and blog articles. I greatly respect her writing and admire her work in the hearing loss community, so I decided to reach out to her. One thing led to another, which eventually led to the following interview. I know you’ll enjoy and learn from what she has to say.

Stu: Can you talk about the evolution of your own hearing loss?

Katherine: Other than age related, there is no hearing loss in my family. I lost the hearing in my left ear when I was 30. There was no indication that anything was wrong until one morning when I couldn’t hear on the telephone and later that day developed dizziness and tinnitus. An MRI and other tests all came up negative and it was diagnosed as Idiopathic sensorineural hearing loss. During my 30’s my hearing worsened and affected my right ear. By 50 I was profoundly deaf in the left ear and had a moderate hearing loss in my right ear. In 2002, I got hearing aids and they helped a lot, but my hearing loss continued to progress, often after periods of prolonged stress, and by 2008, I had lost much of the hearing in my right ear. After a series of last ditch measures, I got a cochlear implant in September of 2009.

Stu: What is the quality of your “hearing experience” now?

Katherine: It varies according to the environment and who is speaking. It’s also dependent on my emotional state. During the years immediately following the implant, I lost my job, and five members of my immediate family died – one after the other. I was the oldest child and the point person for all of them and it was stressful and debilitating. It took therapy and medication to get me back to normal (sort of). Now, as long as disasters aren’t occurring, I hear well enough. I’m a good lip reader, and I’m also pretty brazen about asking people to repeat themselves, even asking a whole dinner table full of people to stop and tell me what they’re talking about.

Stu: What hearing technology do you use?  

Katherine: I have a Phonak Naida hearing aid and an Advanced Bionics Naida cochlear implant. I use my ComPilot for listening to music and books on my smart phone and I love it. I also have a Roger Pen. I use captions on TV. I’m always delighted to find myself in a venue with a hearing loop. Continue reading

Hear Haiti: Making a Difference

Open Ears is following a group of Sonova team members as they head to Haiti with the Hear The World Foundation. Jason Norby is a Principal Clinical Specialist at Advanced Bionics LLC. He enjoys sarcasm and long walks in the park. His favorite dogs are puppies, and his favorite color is light tan.

Day 6

It’s the end of a long work week. I could feel it in the part of my brain that logs hours slept versus hours awake and energy expended. The summary: not enough sleep to offset the hours awake and energy consumed. It’s been a long week. But you know the feeling when something was mentally and physically taxing, yet the intrinsic reward was worth the cost? It was that kind of week and very worthwhile.

The day started with a trip to a school atop a Caribbean mountain to fit three children with hearing aids. The school sat overlooking the coast and green hills nearby. We made this trip to the school earlier this week. The drive  earlier this week up the rutted dirt road was epic with bouncing and jostling for several minutes, and the occasional sound of wheels loudly rebelling as they tried to gain traction. The small four-cylinder engine strained in rebellion to the load and incline. Today however, the dark clouds more than hinted of rain.

It wasn’t even a question, Cathy Jones, our trip director, flatly said, “We aren’t driving up the mountain because if it rains, we will be in trouble.” Continue reading