Day 3: Today was an amazing and wonderful day in Haiti. We got up early and enjoyed a delicious breakfast prepared by the stellar staff at New Life Children’s house, then after a pep talk from Cathy we drove out to the Deaf Academy in Leveque.
Honestly, I have never been so warmly welcomed anywhere in my life. The children swarmed out to meet us, with joyful smiles and hugs aplenty. Truly, I have never known children so eager to laugh, so generous with affection and so grateful for help. In particular, Mike (our on-site hearing aid technician) was a big hit with the young boys, who smothered him with hugs. Every time I looked at him, he had one boy in each arm, one boy clinging to each leg, and sometimes even a fifth one on his back! It was easy to see how pleased they were to have us and how hopeful they were that we could help them.
Theater goers can attest, when one leaves a musical they often walk away with the show tunes stuck in their heads. But a new Broadway revival is leaving the opposite impression, with most of the focus solely on the actors; half of whom are deaf.
Deaf West Theater’s production of Spring Awakening, which opened in New York in September, stars eight deaf actors, eight hearing actors and seven onstage musicians, including Academy Award and Golden Globe winner Marelee Matlin.
At Phonak, we are committed to fighting the stigma attached to hearing loss, to tearing down barriers for the hearing-impaired and to finding new and innovative ways to help everyone reconnect to the beauty of sound. We also know that individuals play a strong role in breaking down those stigmas.
To celebrate those in our community who are being open and proud of their hearing situations, we’ve teamed up with some of our favorite Instagrammers, and asked them to capture their personality and signature looks, and show us what it really means to live with hearing loss.
Last week, we featured 20-year-old Eloise Garland, a music student from the UK.
She is an inspiration to many people – especially teens – with hearing loss, both in what she’s accomplished in her personal life, as well as the unique way she shows of her hearing aids with cool stickers and decorations that she sells on her Etsy.com store, Rainbow Tubes.
You can share your story with us too using the hashtag #lifeison on Instagram! Together we can break down the stigmas of hearing loss.
“I grew up in the countryside and, even as a student in London, I enjoy taking the opportunity to get out of the city and find a good mountain to climb! Even on mountain walks I’ll never miss an opportunity to raise deaf awareness, and Phonak’s mascot, Leo the Lion, is always a good talking point with the people I meet along the way! I recently took him on up a very windy mountain in the Lake District National Park, in England.”
“I first noticed that I couldn’t hear myself when I was about 11 during a choir practice. It turns out I was losing the overtones, which are the frequencies that make the music sparkle. When I first got my hearing aids I was very self-conscious and avoided wearing them. I struggled up until college when I got fitted with Phonak hearing aids.”
“I have three beautiful cats and had never heard them purr until one of the cats decided to lie on top of my Roger Pen! Now I use it all the time to hear their quirky noises and purring. After all, why put limits on who can use the Roger Pen?!”
“I really enjoy taking the time to listen to music and read a book in the evenings, usually with a nice cup of tea. Reading a good book and listening to music transports me to another world and is my main way of unwinding at the end of a busy day. This picture shows one of my favourite books, Pride and Prejudice, with my Roger Pen connected to my iPhone… and of course, a lovely cup of tea!”
“My driving license is something that I worked hard for, and for me it is a huge mark of independence. I enjoy driving and regularly go out to beautiful areas of North Wales such as Snowdonia and the ‘Evo Triangle’ for the fun of it. Hearing the noise of the engine is important to me as it helps me to get the best out of the driving experience, and my hearing aids enable me to do just that.”
“I have enjoyed baking since I was a child when my mum and I would bake scones, Bara Brith (Welsh fruit bread), and carrot cake. Although it can get a bit messy, my hearing aids can stand up to pretty much everything in the kitchen!”
“As a student, socializing is important to me, whether it is going out to events or just having some dinner at home with my friends. My hearing aids help me to keep up with conversation, and using total communication (a mixture of sign and speech where needed) makes life even easier. This photo is of me and two deaf friends at a picnic using sign and speech to communicate.”
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.
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.
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.)
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?”
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).
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.
When Stephanie contacted me, I had actually never heard of Mother Father Deaf Day, which is this Sunday. It’s probably not well known in France, and that’s a pity. On the other hand, everybody these days is talking about “La famille Bélier“, a movie which features children of deaf parents. It is funny and moving, and allows everybody to discover the world of silence. People are astonished and ask me if it’s realistic. And I have to say it is! Continue reading “Son of My Deaf Parents”
