SayWhatClub

Navigating A World That Assumes You Hear: How to Deal With Not Being Able to Hear

By Michele Linder

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At whatever stage in life you came to hearing loss, it’s likely no one gave you any specific information on how to deal with not being able to hear. No one instructed you on what to expect, how to react, or what to do to make communication easier. There’s no required Hearing Loss 101 class.  There’s no orientation for newbies that teaches you how to navigate through difficult hearing situations.

          There should be.

I recently posted a great article to our SayWhatClub Facebook Page that I read on The Mighty, a website that publishes “real stories by real people facing real challenges”. In the article, To the Girl Who Saw Me Struggle to Communicatethe author describes a process she’s gone through “hundreds of times” throughout her college career—standing in line at the bistro in the busy student café rehearsing her order before it’s her turn at the counter. 

         “I’ll admit to wondering… if this situation is something she’s dealt with “hundreds of times”, why isn’t she better at it?”

I’m going to break this simple scenario down for you. I spent several decades letting these very simple situations turn unpleasant, frustrating and awkward.

          Yes, I still assess situations that are new to me.  I rehearse, and use my super powers (lipreading, anticipatory and observation skills, etc.)  I do all I can to make things go more smoothly.  No longer am I on pins and needles waiting for what can, and most likely will, go wrong, because–

I tell people that I can’t hear. 

Don’t be afraid, just do it. And, however you say it is fine… for me, I say “Hi there… first, let me mention that I’m a lipreader and I need to see you speak, so please don’t look down while talking or I won’t be able to read your lips.  Lipreading is great, but it doesn’t always work, so I may need you to write down what I can’t hear.”, as I hold up my trusty pad and pen. That may seem like a mouthful, but it’s pretty much a given that anyone behind a counter—wait staff, check-out or bank clerk, etc.—is going to talk to you while looking down, so clue them in at the start of things and they’ll know better.

And, speak up when you foresee a problem. 

If, when you place your order, the counter person asks for your name, let them know you’re not going to hear them call you when your order is ready. Ask for a plan B.  If they make a workable suggestion, great! If not, offer a solution of your own—“I’ll stand over there and watch for you to wave at me when my order is ready, but if I miss it someone needs to come over and get me.”

          If something does go wrong and you miss a cue, and the aggravated guy behind you taps you on your shoulder and rolls his eyes…

Keep your cool.

Because the minute you freak out, all the skill in the world won’t be of any use… you’re now so flustered that any ability you had to figure out what’s being said goes out the window.

And, do let rude people knowin as nice a way possiblethat rudeness is not helpful.

It’s not something they would want from others, so thank them for getting your attention. Tell them you’re deaf and sometimes miss things.  Also tell them the aggravation and eye-rolling isn’t necessary or appreciated.

          If you need justification for calling them out…

Consider it a teaching moment. 

Express your hope that when they next encounter someone that seems to be not paying attention, consider that they might also be deaf.

          “If you do lose your cool, for whatever reason—someone has made you feel “less than” or you’re embarrassed at not hearing and panic—consider this…”

It’s not your fault that you can’t hear. 

Stop buying into the misconception that you’re inconveniencing the world because you have different communication needs.  

          Stop pressing your lips tightly together and glancing at the scuffs on the toes of your black Converse low-top sneakers. No amount of fiddling with your hearing aids or wishing will produce an answer to the mysterious unknown question you didn’t hear. It will never magically appear out of nowhere in written form.  But you can…

Have them write it down, 

thereby creating your own magic! Hand over your paper and pen, and say “You’re going to have to write that down, I’m not getting it… thanks.” Don’t pose it as a question, simply offer instruction for what you need.

It’s empowering when you realize you don’t have to leave difficult hearing situations to chance. When you actively participate in finding ways to make things play out as smoothly as possible, you’ll likely not need a gentle and helpful soul to swoop in and clue you in… you’ll be able to handle the situation yourself before it turns unpleasant.

However, as the author states, she was having an incredibly stressful week.  She was feeling extremely insecure, isolated, and alone with regard to her hearing loss.  We all know how that feels. It’s normal to have bad days when we feel vulnerable and don’t handle situations as well as we could. So, there’s no need to beat yourself up about it. 

          “It’s certainly not my intent to beat the author up in any way, either. I’m really glad she gave the world a window into what life is like with hearing loss. We’ve all had encounters where we’re not in the frame of mind to be our own best advocate.  Sometimes we’re just tired of explaining. Her article made me think about my own bad days, and how far I’ve come in my fifty-seven years.  What I’ve learned along the way has made me stronger and a better person.”

Hopefully, on those bad days you’ll be as lucky as the author was at crossing paths with a particularly tuned-in person who took it upon themselves to step in and help, and who didn’t make a big deal about it.

Sometimes we, and others, can make hearing loss out to be a bigger deal than it needs to be.

          Yes, it is a big deal that one whole sense is not working the way it was designed to work and it affects almost everything you do, especially how you communicate. However…

Take charge! 

Actively work on ways to eliminate what makes a situation unpleasant. Think of it as instruction that increases your self-sufficiency, which in turn makes you feel more capable. And, capable is what gets you out in the world to enjoy your life more.

Live more, isolate yourself less.  Join SWC for more ideas on how to advocate for yourself.

          Most people with a disability want to remain independent and self-sufficient and to feel capable.  Don’t you?

The Perseverance of Sound: Part II

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert, a deaf musician, who shares his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him.  Part I of this series appeared on February 21, 2017.

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By Justin Krampert

“I didn’t decide to become a musician until the age of 15, which is quite late.” ~ Evelyn Glennie

At 15 years old, my parents insisted I try a new, digital, ITC hearing aid.  Inside, I hated it…the way it felt, how lopsided I felt I heard, the way it sounded, everything.  It was assumed that I was wearing it at school, but I just didn’t.  High school offered, “Related Arts” classes and we went through Art, Music, Writing, etc.  I quickly found that I connected deeply to writing poetry and to group guitar classes.  I was a very early reader, which helped my love of literature and especially poetry. 

The first time I held a guitar, I knew deep inside that it was the instrument of my calling.  The few months we got to study were frustrating, because I wanted to be able to play well so quickly, and getting my hands to cooperate with what my mind heard, was always a task in patience and practice.  I was absorbing myself in bands like Nirvana, Pink Floyd, Alice In Chains, Dream Theater, Stevie Ray Vaughan, Type O Negative, Testament, Joe Satriani, and my favourite guitarist, Steve Vai. 

In the New Jersey winters, I shoveled driveways to save up for gear.  My first acoustic guitar was a beat-up classical from a family friend.  My first real electric guitar and amp was a used Ibanez GX20 and 30-watt Crate amp I bought off a friend in my guitar class, who had bought a better guitar for himself.

justin with his guitar
Music dork, 1995 – enjoying some Jazz chords (looks like an A13 to me, haha)!
justin jamming at summer camp
1996 – jamming with friends at summer camp!

In my junior and senior years, I was very fortunate to take a music theory/composition class with one of the music teachers at the high school, open to a select few.  I soaked up as much knowledge as I could, and wrote small guitar pieces along the way.  Additionally, I learned about some notation software.  I played in a couple bands and we performed during school shows.  It always gave me a rush, being on stage.  Sure I was nervous, but I was young, inspired, and ready to play.  All this time, however, I kept my hearing loss a deep secret.  After my teachers found out about it at my IEP meetings, I started wearing my long hair down to cover up the fact that I wasn’t wearing my despised hearing aid. 

Throughout this entire time of learning to play guitar, I did so without any hearing aids.  I lived in my denial, even though I knew subconsciously that I wasn’t hearing like everybody else did.  When graduation rolled around, while other rich kids got cars or other insanely pricey presents from their parents, I wanted a guitar.  I had my eye on a certain Fender Strat (cue Wayne’s World guitar store scenes!), and right before graduation, my dad took me to Victor’s House of Music in Paramus, NJ, where I beheld the beauty that I would nickname, “Goldie,” in dedication to our kind, supportive homeroom and photography teacher, Mrs. Goldweber. 

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“Goldie,” my Fender 1968 Strat Reissue (made-in-Japan, 1999)

My University years, I felt, were most productive, inspiring, and creative.  From 1999 – 2006, I kept studying guitar, music theory, and composing.  I put my whole hearing loss history behind and reinvented myself.  I performed bi-weekly at our newly established on-campus coffeehouses, reading my own poems, jamming with friends, and playing my songs.  I really got into some serious guitar study, learning Jazz further, bits of Classical guitar, and just enjoying the good, open years of being a college student. 

My hearing loss, I felt, wasn’t so much of an obstacle…but I bluffed a lot and would miss out on dialogue, just letting it slide instead of asking for repeats.  I started joining in the drum-circles, learning techniques from percussionist friends and teaching myself other aspects.  I went out and bought my first drum, a Remo Earth Djembe.  I really liked drumming, because it was even more tactile than guitar.  It was loud, and I wasn’t as concerned about a drum being so out-of-tune as apparently a guitar would be (drums tend to hold their tuning for longer periods of time than guitars do).  Rhythms would start simply, then build, they would remain constant and steady, more easily accessible to my hearing loss.

justin playing a djembe in a drum circle
2002 – Drum circle!

On my musical-and-hearing loss journey, though, I continued to keep it a secret…

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The Perseverance of Sound: Part I

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert, a deaf guitarist, who shares his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him. 

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By Justin Krampert

“Music is about communication… 

it isn’t just something that maybe physically sounds good or orally sounds interesting;
it’s something far, far deeper than that.”
~ Evelyn Glennie

Emerging into the world at eight weeks premature, 2lbs. 2oz, my miniscule body could literally fit in the palm of your hand. I was supposed to be born on Halloween (of all the nifty days!), but I was a Leo instead of a Libra. The universe obviously had a much different scheme in mind for me. Not escaping unscathed, my sight was permanently affected by Retinopathy of Prematurity (ROP). I had a Patent Ductus Arteriosus (PDA) surgery to repair a hole in my heart.  This left me with a long, gnarly, Frankenstein-esque scar up my torso’s left side. And lastly, the very small bump atop my skull reminds me of the life-saving yet ototoxic drugs that were administered.

One of my earliest hearing loss memories was at 2 years old, climbing the stairs at hospital. A small room of intimidating doctors put a strange cap with wires and contraptions on my head. But, it was painless and over before I knew it. I was already wearing glasses, when at age four or five, I received my first hearing aid.  It was a Siemens BTE for my left ear (which had a mild-severe ski-slope, high-frequency hearing loss).  My right ear, which only had a mild loss, did not get a hearing aid.

I remember the audiologist being a nice lady.   She sat me in the tiny booth with headphones, listening for the beeps and words. The day when she put the hearing aid on me, she fiddled with the volume and tone controls, saying, “BAH, BAH, BAH!” into the microphone as she set levels. My mum secured the apparatus to my glasses with a piece of yarn, every day. Thus began the foray into semi-bionic living. Elementary school included speech therapy to help me pronounce my ‘s’ and ‘sh’ sounds, and ‘m’ and ‘n.’  They sounded exactly the same.

At nine years old, we began learning instruments in music class. The music teacher, however, was not much of a empathic person, and once.  When I tried to advocate for myself by asking if I could move closer to see and hear better, she scornfully sighed, saying, “Oh, Justin, relax!” Up unto this point, apparently, I had been a carefree, little self-advocate, politely asking people to please face me when talking, so I could see their faces. I withdrew from speaking up for myself for many years to come. I did not ask for closed captions, and I know I always missed parts in shows and movies. It was the first time where I began to form a philosophy in life: I realized that we should want to help people, and their accommodation requests, when we can; doing so genuinely.

I also began feeling ashamed of my noticeably different ability status.  I wanted to hide my hearing loss. My first formal music experiences were disheartening ones, unfortunately.  My parents decided that if I wanted to try guitar lessons, that my hearing loss would impede learning or enjoyment.

So, I went through elementary and then middle school, not wanting to play anything remotely music-related. I did however, begin to find music that I could enjoy.  Closing my eyes and feeling completely free to allow myself the catharsis of my imagination whilst listening. I had my own little cassette Walkman.  I would put the volume up on the old foam headphones so I could hear it. My eclectic tastes in middle school ranged from the first Enigma album, to Metallica, Nine Inch Nails, to even some rap. Respectively, I enjoyed the ethereal textures, the distorted guitars and winding riffs, the visceral tones, and the piano parts and drumbeats. I always had difficulty with understanding lyrics. So the instrumental part of the music was and is still, the first thing that catches my attention.

Middle school years are described by most as being pretty rocky, and my obviously thick glasses and ugly hearing aid made me a target of continuous ridicule. Back in 3rd grade, I got a Siemens ITE hearing aid, as my parents felt it would be less noticeable, but with my very short hair, it just stuck out even more. My hearing took a noticeable drop, but I denied and tried to fake hearing better. In 7th grade, I made the choice to secretly stop wearing it. When it squealed I would be totally unaware of its high-pitched feedback. My only indication of it malfunctioning was classmates looking at me, pointing and laughing. Luckily, I had Dawn, a fellow classmate, to gently tap me on the shoulder and point to her ear discreetly, so that I could fidget with it, while she chided others for their immaturity.

Interestingly enough, despite trying desperately to hide my hearing loss during my middle school years, I found an ASL class that met weekly, which I attended for a few years until it disbanded. I enjoyed it immensely, and even earned my ASL interpreter badge in Scouts. At the time, I knew I wanted to go into some kind of helping profession when I grew up.  Despite being discouraged by others (because of my low-vision and hearing difficulties) from becoming a Paramedic, I still wanted to find a way to help others. I was quite inspired to actually go to college at Gallaudet, and become a teacher of the d/Deaf. Then music found a way back into my life as I was going into high school…

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