I always get upset when I am told that “it’s not that important” because, to me, hearing every single thing people have to say is a gift. After fighting for my hearing through ten surgeries, I have learned to never take the spoken word for granted. Whether it’s listening to what other people have to say, or hearing enough to form your own opinions, spoken words have always been a treasure to me. Being told “never mind, it’s not that important” takes away my joy in hearing other people and my chance to stand up and form an opinion. This small phrase cuts me deeply, and makes me feel isolated.
I remember telling my mother this when she said that phrase to me. After hearing it from her constantly, I finally lost my temper and said, “It’s important to me! I want to hear your words and decide for myself how I feel about them!”
From my perspective, it felt like another instance of bigotry against hard of hearing individuals. In response to that view, Mom mentioned that most people are often self-conscious about their speech and sometimes embarrassed to share ideas. If they are asked to repeat themselves, they shut down and say “never mind” because they feel their words and ideas are stupid and hate to hear more than once. It was a problem that especially hurt my mother because, like me, she spent her whole life being called stupid. Continue reading “When “Never Mind” Goes Both Ways”
I love thinking about new features for hearing aids. OK — I guess that makes me a little bit weird, but when something is such an important lifeline to communication, it is probably worth thinking about from time to time. A few months ago I wrote a blog post detailing some ideas I had for improving today’s hearing aids. These included:
Have sound recognition: I’m not sure if that is a real term, but what I mean is that the hearing aid could be taught to identify the specific sounds or voices that are most important to you. For example, you could use a wand or app to record your family members’ voices, and the hearing aid would then know that these were critical sounds for you to hear. Right now most hearing aids are only programmable by frequency. Programming by “sound” could be much more accurate.
Identify sounds to avoid: Part two of the sound recognition described above would allow you to teach your hearing aid sounds you want to avoid, like the sound of your air conditioner or refrigerator. This could help alleviate the issue of amplification of all sounds rather than just the important ones.
Have a mute button: Wouldn’t it be nice to turn the sound off every once in a while without having to remove the aids?
Send low battery alert emails: Even my Fitbit sends me an email, when the battery is running low, so it can’t be that hard. This way we could avoid the need to swap batteries on the fly or during an important meeting.
Be directional: I would like to be able to adjust the hearing aid’s microphone to highlight sounds coming from a certain direction or area of the room. This would help in meetings and at restaurants. Ideally, this would be controlled through a wand or smartphone app.
There are very few places in life where I actively feel my disability. With an Audeo V riding in my right ear, amplifying the world’s sounds, I can almost feel “normal” when I am around other people. Conversation has its difficulties, but usually most people are accommodating in a large crowd. Often, the participants will even say “Oh, no one can hear in a crowd like this anyway.” We all laugh and enjoy the evening, mostly filled with jokes, and the occasional drink.
One place where I consistently feel my hearing loss, however, is when my dad asks if I want to take a ride on the boat. Any time I go near water, I have to leave my hearing aid at home. Most hearing aids are not water proof, and my model is incredibly sensitive to even the slightest drop of moisture. At the beach, I can still pose as “normal” because I spend so much time body surfing over the waves until I am carried back to shore.
In the hull of a Sunfish, however, I cannot pretend my loss does not exist because I have no hearing aid to help me sail across the sea. As I put on my life vest and help my dad take the boat into the water, however, the dizziness accompanying my loss is accompanied by embarrassment. The only other children who sail with their parents are ones who do not yet know how to sail themselves. By the time they are twelve, they can man Optis and Sunfish by themselves.
Everyone else my age has been sailing on their own for years. Seeing as I am one of the few who still sails with a parent, I cannot help but feel ashamed, even when I know I should not. At this point in my life, I have opted not to sail altogether. Continue reading “Missing the Boat”
As a social media community manager, I get to talk to a lot of people about their hearing loss. It’s been amazing to hear people’s stories – whether it’s a mom sharing an Instagram video from the first time her child’s hearing aids turned on, or a post about how new technologies are allowing a hearing aid wearer to enjoy sounds in situations they never before thought possible.
While most of my interactions have been virtual, the raw emotions are still there. I still feel a closeness with anyone whom I can answer a question for or connect them with our community of people facing similar hearing situations.
A few weeks ago, however, I had the opportunity to go offline and connect with a Phonak user in person, during filming for the new Phonak Virto V custom hearing aid testimonial video.
When I first met Josef, I was immediately warmed by his presence. His friendly demeanor and grandfatherly characteristics makes him someone you could sit down with for hours and listen to the stories he could share from his 81 years of life.
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.
Some time ago, I wrote a post asking if other hearing aid users found it difficult to find venues and customer service points with working hearing loops and, in the responses on the blog and Facebook page, it appeared that there was an even bigger issue at large and that was that hearing aid users were not all aware of what a loop and a telecoil do.
Steph followed up my post with a basic introduction to hearing loops and the telecoil setting, which is present (but not always activated) in most hearing aids.
As an accessibility consultant working with the hospitality industry in the UK, I am keen to raise awareness on the benefit of, and need for, hearing loops — and the way I explain the benefit to a hearing aid user is that it ‘overcomes the barrier of both distance and background noise, by transmitting directly into the hearing aid, the voice of the person speaking into a microphone linked to the loop’.
Although I’m struggling to find good quality working loops where I live, I have had two positive experiences of using them at conferences and this has contributed to me advocating their use to our clients in the hospitality industry: well, that and the Equality Act 2010! The Equality Act of 2010 replaced the Disability Discrimination Act and it also simplified and strengthened this UK law with regard to discrimination and inequality. Here’s what is says in regards to the duty to make ‘reasonable adjustments’ to improve services for disabled customers:
Service providers are required to make changes, where needed, to improve service for disabled customers or potential customers. There is a legal requirement to make reasonable changes to the way things are done (such as changing a policy), to the built environment (such as making changes to the structure to improve access) and to provide auxiliary aids and services (such as providing information in an accessible format, an induction loop for customers with hearing aids, special computer software or additional staff support when using a service).
If you’re active on social media, you probably have a list of hashtags you use when sharing photos about hearing loss. #HearingLoss, of course, #LifeIsOn – the official Phonak hashtag – and others such as #hardofhearing #deafkidsrock and #hearingaids. One hashtag campaign, however, recently gained international attention, with the important message: #ShowYourAids.
The #ShowYourAids social media campaign exploded this summer thanks to one young woman, Emma Rudkin, who knows from experience how tough it can be to wear hearing aids proudly.
Emma, a 19-year-old Texas native and this year’s Miss San Antonio, started the social media movement and non-profit, Aid The Silent, to raise awareness and support for the deaf community.
I talked with her about the #ShowYourAids movement and how she gained the courage to show off her Phonak hearing aids.