“Deaf,” “deaf,” “hard of hearing,” “hearing impaired”…
There are many words that describe someone with hearing loss. Some of them are used to describe how much you can hear, others elicit positive feelings, and other more negative. Other terms are viewed as politically correct, while unfortunately in some places it’s still common to use words like “deaf and dumb.”
Thankfully, we’ve come a long way from terms that belittle people with hearing loss, but there are still situations that we run into that make us think, wow, we still have a long way to go.
So, what do you think? How do you describe hearing loss to your friends, family or people you aren’t that close with? Does it matter?
“The idea behind “hearing impaired” is that we are lesser human beings and must be fixed to function.
Those who suffer (dare I use “suffer”?) from mild to moderate hearing loss do not necessarily identify with the term deaf—a word that is historically loaded and also carries a distinction between capitalized and lowercase “d”. Uppercase “Deaf” reflects a community and a culture of identity, and carries pride similar to that of ethnic and religious groups. Lowercase “deaf” can reflect only severe to profound hearing loss, or hearing loss on the whole, depending who you ask.” – Christina The Name I Call Myself
That’s the number of people with disabilities working in the US, compared to 68.2 percent without disabilities, according to United States Department of Labor’s September 2015 Disability Employment Statistics.
The Americans with Disabilities Act (ADA) has laws that make discrimination on the basis of disability illegal, but my high school experience showed me the slippery ways people in power can bypass these laws.
In my first post-graduate job, a makeup salesperson at a major US department store, I received diversity training, which included many topics: language inclusivity; recognizing racial bias; respect of different religions. But what struck me was the topic of disability.
When I first entered the workforce, my parents encouraged me to hide my disability because I passed for able-bodied better than most people in my position. Any discrimination, they believed, would be brought by my openness, and they suspected it would be better for me to be quiet. Typically, I would have rejected this advice, telling my parents I would not be shackled by chains of ableism created by ignorant people, however, I was nervous about my post-collegiate future and felt adrift in the “real world” after almost 20 years of academia. I hated living at home and I wanted to earn money, but I was not sure if moving out and making a living would be possible if I was open about my hearing loss. Wanting to err on the side of caution, I nervously chose to go into hiding on my first day of work.
I came on this trip fully expecting a life changing experience. What I didn’t expect was that the similarities between our worlds would affect me as much as the differences.
Earlier this week, the team agreed that we were here to work (and we have!). In addition to testing for hearing loss, fitting, and follow-up of the children at the Haiti Deaf Academy, we were compelled to do more than that, and we provided other services for other at-risk groups for hearing loss, as time permitted. One of these extra projects came when we were invited to do hearing screenings for students of The Respire Haiti Christian School.
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.
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.
Picking a term to describe our hearing is fraught with implications.
The idea behind “hearing impaired” is that we are lesser human beings and must be fixed to function.
Those who suffer (dare I use “suffer”?) from mild to moderate hearing loss do not necessarily identify with the term deaf—a word that is historically loaded and also carries a distinction between capitalized and lowercase “d”. Uppercase “Deaf” reflects a community and a culture of identity, and carries pride similar to that of ethnic and religious groups. Lowercase “deaf” can reflect only severe to profound hearing loss, or hearing loss on the whole, depending who you ask.
Everybody who has met me knows that I have a very strong, yet unpredictable sense of style.
One day, I will wear a blue high-low dress that floats over the floor as I walk. My eyes are blue and silver, and my legs completely black from the illusion created by leggings and boots. The next, I might step out in hot pink skinny jeans and a Gap kids’ shirt with a starry-eyed cat, paired with black thigh-high boots. Cat wings will grace my eyes, and sometimes, I’ll wear heart-shaped glasses if I feel really psychedelic. In college, I actually received a prize for having the most colorful fashion in the entire school. Frequently, I am the fashion consult of my family and friends. The outlandish, erratic nature of my fashion is, ironically, a signature style.
My freedom to dress so outlandishly was acquired by the alienation that came from my hearing loss and chronic ear infections. Other middle school students frequently called me a “retard”, and harassed me in every class because of my hearing loss.
Christmas is a time for remembering old friends, but sometimes it can also bring back some sad or unpleasant memories. Seeing a former friend’s name in my address book reminded me of something that happened a few years ago…
After my sudden deafness in my ‘good ear’ in 2011, I could no longer use our telephone or my mobile for calls. Some friends were accommodating, converting our communication to text, email or social media but, sadly, others weren’t so accommodating.