On this balmy evening in May, that outfit was funky navy dress pants, a fringed off white blazer, gray canvas slip ons, and a T-shirt emblazoned with an image of the iconic Princess Leia proudly declaring, “Don’t Mess With The Princess”. (My hair was perfectly in place, too, which as anyone who is a faithful reader of these blogs knows is a Very Big Thing.)
My escort for the evening was dressed dapper as well, in dark jeans, black lace ups, a black pin-stripe blazer – and a shirt detailing the many moods of Chewbacca.
We were the epitome of style as we journeyed into town to Symphony Hall, where Keith Lockhart and the Boston Pops accompanied by narrator Jeremy Kissel awaited our arrival to transport us through a galaxy far, far away.
A curated selection of the music from all of the Star Wars movies.
We settled into our seats in the second balcony, last row (I put aside my ticket snobbery for the sake of research) and fiddled a bit with our hearing-aid settings and the accompanying apps on our phones to help us loop into the provided hearing accommodation, the T-coil. For those unfamiliar with the T-coil technology, here is a handy link: https://www.healthyhearing.com/report/45927-Hearing-aids-in-loop
The hyperfocus on figuring out the T-coil provided a much needed distraction as we were both independently hoping, persevering and appealing to a higher power that the car would be where we left it upon our return. (Our mutual rumination was revealed once we were well on our way home.) We parked in what we were 90% sure was the correct, reserved, SpotHero parking spot in a back alley near Symphony Hall. This was a hard won battle after many laps around town looking for it. (I prefer the term “adventure”, Brad prefers “stressful situation that is Julie’s fault per usual”). We emerged victorious in the end, much like the resistance, as the car was waiting patiently for us to take us back home to reality. As Brad is fond of saying, “Every time I am out with you – there is a story – EVERY TIME!”
Brad was successful in connecting his hearing aids to the T-Coil, I was a few minutes behind due to technical difficulties contributed to in part by my impatience and my hearing aids stubbornly refusing to sync with the technology. We were previewing this technology as a “test run” prior to the start of the show, which made it difficult to determine if we were “plugged in”. Once the show began, Brad tested out his connection prior to intermission and I opted to experience the magic of the T-Coil following intermission.
Personally, it was a mixed review from my end of the hearing accommodation spectrum. I expected that the narrator would sound clearer using the T-Coil, but in fact there was an echo present and his speech sounded garbled at times, leaving me to disconnect from the technology when he was speaking as I did not want to miss his animated narration and impressive sound effects (pew! pew! was a personal favorite).
I have a musical background and spent many years studying the flute and piccolo. I was straining to hear the high registers during the concert, but because I knew the music so well I wondered if my brain was “filling in” the parts that I was acutely missing. I used the T-coil during musical selections after intermission where I knew that the flute and piccolos would be more prominent, and I was amazed at the richness and depth present – it nearly brought a tear to my eye when I realized exactly how much I was truly missing with my hearing loss as severe as it has become over the years.
On the opposite end, I did not expect how uncomfortably loud the lower registers were – especially the plucking of violin strings! I also picked up on all of the ambient noise from the orchestra – the rustling of jackets and turning of the pages of the score, which was jarring to say the least.
Overall, it was an incredible experience – the opening notes of the iconic introductory theme had Brad and I grinning and giggling and bouncing in our seats. I was instantly hurtled back in time to my childhood and the memories of playing with my well-loved Kenner figurines, acting out pretend scenes with my cousins on the third floor of my uncle’s house, and watching the movies over and over again. It was truly unforgettable, and the musical equivalent of speeding through hyperspace.
I was born in the 70s, grew up in the 80s, had a time for myself in the 90s, and have mostly pulled it together in the 2000s. Over the years, I have secretly kept tucked away under wraps my sheer love for all things Star Wars. I have rarely revealed this to others, choosing instead to demure when all the things that orbit in a galaxy far, far away crept its way into conversation. I bit back my opinions on whether Han shot first (he did) and never shared my irrational fears of the Sand People (they still make me anxious) – and for years, I could never quite put my finger on why I kept my fandom hidden away.
I think I have finally figured out why I have held back my passion for hyperspace flights and cuddly Ewoks. I first became aware of Star Wars during a very strict period where certain toys and interests were divided down assigned gender lines. There were boy things and girl things – and Star Wars belonged exclusively to the boy’s camp. I was expected to be content with play vacuums, delicate dolls, and the prospect of playing “dress up” with jeweled gowns and shoes adorned with pink marabou feathers. I was expected to be dainty, polite, and “grossed out” by worms and mudpies. I was expected to be dreaming of my Prince Charming and planning my dream wedding in my mind while I played with Barbies and made up storylines with my stuffed animals.
It was unexpected that I would hate all of it.
I despised dolls, tea parties, and experimenting with makeup. I relished in recreating smackdowns with my brothers’ Wrestlemania figures. I played kickball at recess instead of making beaded friendship pins with my classmates. I jumped eagerly at being chosen for the job of beating the erasers together outside and welcomed getting smothered in chalk dust. I certainly never sat around and dreamt of my wedding, and I definitely was not about to wait around for Prince Charming to show up and sweep me off my feet. Instead, I thought about how I wanted to be a teacher when I grew up, all of the places I wanted to travel, and how many books I wanted to publish. I remember having a strong feeling of how I wanted to design my life, but didn’t have the words for it that I do now – I wanted to live a good story.
I wanted to be Princess Leia.
I identified with her so strongly from the first scene in “A New Hope” – she looked like me with her dark hair, dark eyes, and unruly hair bound into cinnamon buns that framed her face. (My hair was just unruly, forever tamed into ponytails and braids as opposed to the now iconic circular coif). Princess Leia had a clear goal in mind, and did whatever was needed to reach it, inspiring me to set lofty goals for myself with an expectation that they would be met. Princess Leia never hesitated to speak her truth. As a child with hearing loss, I made sure to use my own voice to ensure that I got the accommodations and modifications I deserved to access a world not designed with my needs in mind. I drew inspiration from her strength in never backing down from those that tried to diminish her, and fought to hold space for myself through elementary school when I was on the receiving end of abject cruelty from ignorant children that mocked my disability. I loved that she was a fighter, much like I was, clawing back at oppression while I clawed my way to my own personal achievements in spite of my hearing loss. For the first time, in her example, I owned my own power and understood that there was more than one way to be feminine.
I abhorred the frilly, and was finally given permission to embrace the fierce.
My hearing loss has no cause that anyone has been able to figure out – to quote Lady Gaga, “I was born this way.” I, however, have my own ridiculous, unfounded, and humorous theories…and they all trace back to my Mom.
My Mom has a trademark whistle. She places her fingers in her mouth and out comes this incredible screech that can be heard across a football field, which may – or may not – have contributed to my hearing loss.
My Mom is a classically trained opera singer, and sang while pregnant with me – and perhaps those high notes caused my developing cochleas to exit stage right.
My Mom has a booming red voice which was often employed in our home when I was growing up in an attempt to be heard through the constant activity of various people wandering in and out in search of a meal, a jam session with the resident musicians, or a Spades partner at the kitchen table. (Did Mom’s ability to be heard above the fray cause my hearing loss?).
My mother stands all of 5’ 1” now, and her once fiery red hair has faded to a shade that I have termed “soft peach”. She is moving a little slower but is still outpacing many people that are decades her junior. She will listen to anyone’s fears and worries, and while she will offer a thought or two, she peppers in a few “But you do what you want…what do I know?” just in case her advice ruins your life. If you show up at her door, you are expected to remove your shoes, and “pay attention to Maggie!” (the dog) before being given a directive to sit at The Table. Most people will ask you to come and sit comfortably in the living room upon a soft couch – not in the DeMatteo house. You are at The Table – for that is the heart of any Italian home. This is usually due to many Italian people owning living room furniture that is ensconced in plastic and “is just for company”. (I can make fun of my people if I want to…).
The Table is where everything happens – celebrations occur, obituaries are read aloud, memories are shared, arguments ensue, meatballs are critiqued, and occasionally someone is stabbed with a fork (usually in jest). The Table has seen cribbage tournaments, countless spilled drinks, and a myriad of seasonal, vinyl tablecloths. The Table has seated people of all ages and walks of life – not to mention, for a period of time, an ill mannered, temperamental and unpleasant shih-tzu named Bear. That damn dog had a high chair upon which he perched, pulled up to the edge of the table, where he was fed first while the rest of us waited for the prince to taste test his kibble mixed with a sample of the family dinner offering, before the rest of us were allowed to take our own food and commence with our meal. I wish I was kidding.
As Brad and I have plowed forward in our content creation, video recordings, and advocacy work, my hearing loss is always at the front of my mind. I was over at my parents’ home recently, and was seated at The Table. I smoothed my hands over the surface, feeling the rubbery smoothness of the table protection pads, and thought about how many times my Mom and Dad must have sat at The Table when I started to lose my hearing with no warning. I imagined them sitting at The Table completely bewildered at this sudden and unexpected diagnosis. I pictured them pouring over doctor’s notes, trying to make sense of it all. I felt their grief as they studied the lines and loops of my early audiograms, desperate to find meaning behind all of it, but most of all answers as to how this happened. I felt my own brow crease with worry when I thought about how they must have sat together many times strategizing how to manage finances to ensure that I had the hearing aids I so badly needed to access the world. I felt tears prick the corners of my eyes, thinking about my Mom sitting at The Table long after the house had fallen silent with all the kids in bed, with her head in her hands, overwhelmed at the prospect of holding all of it together. The heartbreak she must have hidden when I would come home beaten but not broken from the latest cruelty I received at the hands of school bullies, recanting the tales to her as we sat at The Table after school. The happy tears she must have held back as her daughter with the hearing loss reported triumphs at The Table during dinner – things like getting published in the school paper, finally squawking out a few sounds on the piccolo, or being admitted early-decision to Boston College, her dream school.
As I was lost in thought at The Table, my Mom was bustling around the kitchen, offering me everything from leftovers hidden in the depths of the fridge to a cup of coffee, huffing under her breath as I declined all offers because I wasn’t staying for too long of a visit. I watched her shuffle about, debating whether to heat the leftover eggplant from the “it was good enough” Italian restaurant lunch from earlier in the week. And suddenly – it struck me – how she has always made it look so easy, this management of a home, a family, a life.
She may be a tiny thing, but to me she is a giant.
Happy Mother’s Day, Mom – I love you.
(And yes, Mom, we are all well into middle age and still fear the “flying slipper”…Shawn was right that the early prototypes of global positioning systems were affixed into the soles because it never missed its target. Ever.)
It was a serious meeting, about a serious topic, and I was sitting in a very serious position listening to the very serious speaker. The woman to my left had finished shoveling handfuls of miniature pretzels into her mouth and decided to fiddle with the bag…she twisted and twisted that crackling, crinkling bag over and over again. Her endless manipulation of that pretzel bag became the only sound that my hearing aids were registering – and, therefore, amplifying. My level of frustration continued to rise and I suddenly snapped. I reached over and in one seamless motion I ripped the bag out of her hands and threw it on the floor beside me. The speaker momentarily paused and glanced at me with a mix of amusement and horror on her face – as I sat once again stone faced and refocused on the very serious speaker delivering the very serious information.
I hate meetings.
Unfortunately, my profession requires that I attend meetings…frequently. All kinds of meetings: large meetings, small meetings, meetings around rectangle tables, meetings in important looking rooms with inspirational posters on the wall, and my favorite types of meetings – those that should have been an email.
I always arrive at a meeting at least five minutes ahead of the actual start time because I need to be primed and ready to play my favorite game, “Where The Hell Do I Sit?” The approach I take to determine where I sit functions at a level of military precision that would make Patton blush. I sweep the room with a gaze, I consider my sight lines from all possible angles, I contemplate the acoustics, and when I have honed in on the perfect spot I swoop into the seat with definitive authority. (And then I wait…because now I’m early and have no one to talk to…so I do that awkward thing of inspecting the point of my pencil, dash off a “serious email” to someone, pretend to study the handouts…the usual).
Most of the time, I get lucky because the environment is set up in such a way that it is clear where the center of the meeting will be happening – either the facilitator, presenter, or panel of persons has demarcated their space. This assists me with my decision making when determining the best possible seat that will place the majority of the incoming information to my left ear (relatively stronger ear, by a narrow margin) and will simultaneously allow me enough of a focal point so I can lip read to back up what I am hearing. I despise the “open concept” meeting space – when there is no clear spot as to where the action will be happening – either by design or by disorganization, this is the worst scenario for me to walk into because now any seat I pick may or may not be the one for me – if I wanted to play these odds, I’d go to Vegas and let it all ride on the roulette table.
I applaud those that conduct meetings from the front of the room when the chairs are arranged in neat and tidy rows. I sit in the front and it is marvelous! I know there will be plenty of room up there because no one else wants to sit in the front! This frees me from having to make a calculated decision and it is glorious! The meetings conducted at large square or rectangle tables, while not my favorite, at least have defined corner space. I can position myself at a corner and be able to pivot and swivel from side to side to catch all that is happening around me, though I do need to lean forward or lean back a little more frequently to make sure that I can see everyone’s faces. If I have to sit at a table, round or oval is best because it eliminates the angles of positioning to lip read that I have to awkwardly engage in when I am at a table with corners.
There is a meeting configuration that I despise more than Notre Dame Football – and for those of you that know me, you know this is serious – when long rectangle tables are “sprinkled” around the room and the speaker is going to “roam about” and “check in” with groups between presentation slides…because we will be “turning and talking”.
NOPE.
Do not turn, do not talk, do not roam – there is nothing to say or overhear from any of these “collaborative conversations” – because no one is talking about the “curious question” the well-meaning presenter has posed. The “group discussion” easily devolves into such riveting topics including lip gloss, crazy neighbors, the weather, or general bitching about not wanting to be in this meeting in the first place. I am now forced into an already uncomfortable position of leaning forwards, backwards, twisting, turning and leaning to try and follow even a little bit of what the presenter is saying during their little trip around the meeting space. This is then compounded by the eruption of “collaborative conversations” (which we all know is nonsense) that creates background noise making it impossible for me to even hear, nevermind participate in, the useless discussions about wrinkle cream, parking passes, protein shake recipes, and that witch in Human Resources. I become easily fatigued, and am now forced to sit there with a fake smile plastered on my face. I nod and smile or emote in some disapproving fashion in what is hopefully the right moment, and pray to any deity that is listening that the presenter will not ask me what our group discussed during our “unpacking opportunity”. It’s a good time.
It was at one of these extra special free-range meetings when I found myself on the receiving end of one of the more insulting and demeaning experiences I have had as a person with a hearing loss. I remember that I was turned away from this particular colleague and reviewing notes I had made on my computer to cross reference later against the handouts to help me ensure that I was capturing as much of the “big picture” as I possibly could in the seventh circle of hell that was this meeting formation.
There was a flash of motion just within my peripheral vision that was startling enough to cause me to turn my head to the left – only to be met with the visual of a colleague snapping their fingers at me while shouting my name, “JULIE! (SNAP) JULIE! (SNAP)!” I remember pausing ever so briefly thinking, “no…this can’t be real” – but it was very real and very, very rude. I was fortunate that I had at least one witness to the absurdity of it all – but I still cannot believe that it happened.
I was then forced into a position that most disabled people find themselves in from time to time – having to decide how to respond…do I assume the “Angry Advocate” pose or do I go with the, “Joking Disabled Pal” position. I went with the, “Are You For Real!?” persona – I turned to the offending party, and said “Did you seriously just snap at a person with a hearing loss? Seriously?” The response? “I called your name twice.”
Let’s brainstorm, gentle readers – think for a moment…what other strategies could you have used to get someone’s attention BEFORE resorting to snapping? Hmmm …a gentle tap on the arm, alerting another person at the table to please tap my shoulder, passing a note, sending me a text message on my phone, a small discreet wave in my peripheral vision…notice that NONE of them involve snapping!
The snapping action – beyond being blatantly rude and degrading – implies that I am “less than” in the eyes of the person committing the action. The snap sends a message that I am not competent enough to be independently aware of the world around me and obviously need to be communicated with in such a forceful manner. It becomes obvious to me that because of my disability, snapping must be the first and only strategy to employ because to offer me the respect of another form of gaining my attention is not worth your efforts.
Ask yourselves – and answer truthfully – if you were going to get the attention of a typical hearing person at a table, would you snap?
It usually started with one of my parents coming in to wake me up by shaking my feet, eventually moving closer to jostle my shoulder, and then resort to repeatedly flashing the overhead lights off and on. This served no purpose beyond aggravating me and causing me to roll over and fall back asleep. Undeterred, my Dad would on occasion arrive armed with his trumpet and would perform a rousing round of “Reveille”. My hearing aids were out, but I could hear snatches of the bleating sounds. This concert raised my blood pressure but did nothing to move me physically out of bed. The next phase included a parent returning to my bedroom, flinging on all the lights and engagement in loud ranting close to my ears about how I was going to miss the bus and as a result would be trudging several miles to get to the high school because I was most certainly not going to get a ride to school based on my blatant refusal to rise from bed and greet the day.
But – there was a Secret Agent that lurked in the home that had yet been called forth to serve. His name was Vince, waking me up was a mission he always chose to accept. That little shih tzu/poodle mix would come tearing into my bedroom at full speed, and all 18 pounds of his little fluffy body would land squarely on my chest. This not-so-soft landing was inevitably accompanied by a full on assault of wet doggy kisses. He slobbered all over my face and pillow, with a special penchant for sticking his tongue straight up my nostrils. thus rendering breathing impossible. No amount of pushing him away, screaming, squealing or pleading with him would make it stop – the only solution was getting out of bed.
This multi-tiered morning alertness system worked well enough when I was living at home, but college was looming. Sadly, Vince was not going to be able to join me as I left one nest for another to fly with the Eagles.
My darling neighbor across the street was an elderly man with a fascinating life story, a generous heart, and a penchant for problem solving. He knew that waking up in the morning while I was living away from home was going to be a challenge without a creative solution that circumvented the traditional alarm clock which I was unable to hear.
Mr. Weiss had a problem, and through his network of connections, he found the solution.
The solution arrived by way of a creative, enterprising, mechanically minded nun whose acquaintance I never made, but without her engineering and design skills I would never have been able to wake up through my four years of college.
It was The Beast.
The likes of which I’ve never seen before or since – but its effectiveness cannot be discounted.
This…thing…consisted of a slab of wood that slid between the mattress and box spring. At the end of the board, a…machine of some sort…was attached. This motor, for lack of a better term, rested against the metal bed frame and was wired to an alarm clock. Somehow – through the miracles of electricity and mechanical manipulation that I will never understand – the alarm would go off, and the motor would whir to life as it banged and clanged itself against the metal bed frame, causing my bed to shake and people for miles around to leap from their beds and run for cover fearing an air raid or an alien invasion.
It was the equivalent of sleeping on an earthquake fault.
I was unceremoniously jolted awake each morning by this vibrating monster of an alarm clock. My heart leapt out of my chest and my soul left my body as I greeted each day with a fast assessment of whether I was seeing myself from above on my way to the heavens or if I was, in fact, still a physical and living being after experiencing the sheer terror of that…thing.
(I now pause to acknowledge the patience and care extended to me by my college roommate, Cathy, for putting up with this machine daily – especially in the early mornings of student teaching when I would hit snooze, forget about it, and leave the room – causing her to leap out of bed at an hour where she decidedly did not need to be alert to deal with it. I am so sorry. I really have friends that I do not deserve! Drinks on me at our 30th reunion next year!)
That beastly board and motor combination followed me through my four years at Boston College, back home after college, and then to my first apartment. As the world became smaller with the advent of the internet and Amazon – I discovered the existence of a range of previously unknown accessibility tools for the hearing impaired. To my surprise, I found a streamlined, updated, and modernized version of “The Beast” – as I’d come to refer to it with fondness over the years. The new versions of the old concept were alarm clocks with a vibrating disc that fit between the mattress and box spring. I have had every color combination and shape of these alarm clocks over the years, and all of them have needed to be plugged into outlets, making them a tad cumbersome for travel. But – considering my prior option was lugging a motor attached to a 4×4, a little room being taken up in the suitcase by the alarm clock was a fair compromise.
A few months back, as I was preparing to travel to a conference with Brad, I found a travel version of my trusty alarm clock – a small, disc version that fit under the mattress and ran on batteries. I purchased it excitedly and made the fatal flaw of not checking it at home first to see if it was powerful enough to wake me up, as I am a very deep sleeper. Luckily, I woke up on my own the first morning of the conference and realized that the alarm had gone off but did nothing to wake me up as the “shaking sensation” was nowhere near strong enough. I will be sure to pack my “regular” plug-in alarm clock from now on the next time I travel alone to ensure that I am awake and ready for the day.
I envy those that can wake to cascading chimes or rousing rock and roll music – for the only option I have, all these years later, is to ease into a promising sleep with the ever present realization that on the other end of dreamland I will be rudely awakened by my own personal tectonic plates crashing beneath my sleeping form. A small price to pay for being able to wake up independently – but there are days when I sorely miss my little fluffy Vince bounding in to help me greet the sun.
“Hold this and look at this” was the directive from my Grandma – the items being a hotdog and a race book. At 9 years old I was already an accomplished gambler alongside Grandma at the Suffolk Downs racetrack in East Boston. She trained me from a young age in her foolproof method to pick the winner – “look at the horse’s name – Dudley Shoes is the one we want, it has the name of my street.” (This method rarely worked, but Grandma was undeterred). We would sit together in the stands, chomping on our hotdogs, Grandma’s and my eyes searching the horses on parade trying to find the one with the winning moniker, by our logic at least. My favorite part was watching the horses being guided into their respective pens at the starting line. I would watch them snorting and huffing, pawing at the ground, desperate to charge forward in a passionate race to the finish. The excitement and anxiety was palpable, and I often wondered what it felt like to be the jockey astride the horse knowing that the success of this race was only partially in their control. I imagined that the waiting must be a mix of anxiety and exhilaration mixed with a desire for the entire thing to reach its natural conclusion – the end of the race. I knew I’d never be a jockey (the only thing in life I’m actually too tall for) but in my 9 year old mind, the opportunity to feel that mix of heady excitement and anxiety was a fervent wish.
Fast forward 41 years, and my wish to devolve into an overloaded state of high intensity and anxiety had come to fruition.
I was in the checkout line at Marshalls. And I had assumed the position of a horse at the starting gate.
The line was long, and I unconsciously began pawing at the tile floor, looking around for clues in the environment as to what would happen next as I inched towards the front of the line. I was very close to resorting to huffing and grunting as the load of items in my arms grew increasingly heavier. My anxiety was rising because I knew I was going to have to engage in a temporary, transactional relationship with someone that I likely was not going to be able to hear clearly.
I tend to prefer online shopping. I avoid awkward exchanges with salespeople, and the inevitable occurrence of a fellow shopper engaging me in “small talk” – clearly missing the cue that the scowl on my face is meant to be a deterrent, not an invitation.
Unfortunately, I was in need of a shirt in the perfect shade of navy to complete an outfit for an upcoming event. Due to the timeliness of the purchase, I was unable to rely on online shopping, and instead found myself inside Marshalls. The haunted house of retail establishments due to its being unpredictable, chaotic, and you’re never quite sure what you’re going to encounter upon entry. The looming transactional encounter that waited for me at the end of this experience was peaking my anticipatory anxiety to new heights.
I attempted to assuage my anxiety by focusing on what I knew to be true about making purchases at a store, reminding myself of the predictability of interactions with a cashier during the checkout process. I focused on “how things usually go”:
-a half hearted greeting traded between both parties
-a question posed from the cashier along the lines of, “Did you find everything you were looking for?”
-a well rehearsed response of “Yes!” with feigned enthusiasm
-the ringing up of the desired items accompanied by the clunking sound of the security tag removal machine
-purchases shoved into a bag, handed over to the customer
-the whirring of automatic sliding doors
-pitter patter of the feet of happy customers skipping out into the sunshine
As harrowing as this process can be, my hearing impaired self is grateful to the system that the Marshalls brand of stores instituted a few years back – a flashing number display, akin to a deli counter, sending a nonverbal alert as to which register was available for the next paying customer. This system effectively eliminated my need to strain my ears and watch every interaction closely for nonverbal cues as to which register was available as I was unable to hear the words, “NEXT IN LINE”, being exclaimed amidst a store buzzing with activity and ambient noise.
In what felt like a blink of an eye, I was at the front of the line, carefully watching the digital number display, waiting for one to blink and direct me to the available cashier. The number 6 began to flash, my guiding North Star, and I moved forward to engage in what was sure to be a miscommunication.
Intellectually, I knew that sharing my hearing loss upfront would make this process so much smoother. However, I possessed the petulance of an unruly child and I just didn’t want to (insert foot stomp here). The constant announcement and disclosure of my disability is draining, and being on the receiving end of a myriad of reactions after said announcement makes it even worse as it ranges from nonchalance to shock to complete unacknowledgement. On the flip side, the big disability reveal often prompts declarations from the nervous, “Oh! My cousin’s neighbor is Deaf and they do SO WELL!’ or the jolly jokester with the time worn joke of, “What?” (hearty guffaw inserted here).
I just didn’t want to deal with it. At all.
The first part of the transactional interlude followed the predictable script of which we are all familiar, which made me hopeful that I could escape unscathed. The mandatory verbal exchanges were made, the tickets were scanned, the security tags clunked, and then the cashier spoke. They said…something? I froze, stared at them, and instead of asking for a repetition I engaged in an awkward “oh, yeah?” and an indeterminate, noncommittal head nod that could have meant anything from agreement to indifference.
The cashier – undeterred – spoke again, with a pause that indicated that a response was required on my part. A response I’d happily have provided, had I known the question. I had reached the point of the exchange where I had no choice but to self-identify – the words came tumbling out of my mouth: “I’m sorry – I’m hearing impaired, would you mind rephrasing the question?” I then mentally berated myself for leading with an apology that is never necessary – I have nothing to apologize for, and it is not my job as a person with a disability to create a safe space for someone with typical abilities. I leaned a bit forward over the counter, in an attempt to hear the repeated inquiry, which was fortunately accompanied by a pamphlet. I think I was asked if I wanted to open a store credit card, but I have no idea. I declined the request, quickly inserted my credit card into the payment kiosk, opted for an email receipt, grabbed the bag of merchandise, and hightailed it to the door.
As I stepped outside and made my way to my car, I asked myself if the quest for the navy blue shirt in that perfect shade was worth all of that stress.
The conclusion? Absolutely not.
I made a promise to myself that next time I would enthusiastically shop online and pay the exorbitant shipping fees for a rush delivery.
We were presented with the opportunity to take “Hearing Things with Julie and Brad” on the road in the form of presenting at the Hearing Loss Association of America (HLAA) New England conference the last weekend in March – The following blog post takes you through my side of the story…before, during and after!
Read on to see how it went, if we will do it again, and if we’re still speaking…because nothing tests a partnership quite like traveling together for the first time!
THE LEAD UP:
I have been to exactly one conference in my career – where I fangirled out on the brilliant and unsuspecting author, Lois Lowry, as she was entering the bathroom. As educators, the only traveling we do for work involves sneaking down the hallway to steal the “good scissors” out of the copy room or dashing up a few flights of stairs to the teacher you’re always nice to because they have “the good stuff” stock in their classroom cabinets – including, but not limited to, new white board markers, chart paper, and an unlimited supply of staplers.
I was ecstatic about this new adventure, humming a few bars of “On the Road Again” and badly impersonating Willie Nelson’s iconic vibrato, and of course plotting my outfits and weighing the importance of ensuring that Brad and I would be dressed in complimentary color palettes.
I started sketching out the first draft of many packing lists and my mind began wandering about – here are the thoughts that were rattling around my brain as I debated necklaces, scarves and shoes to compliment the carefully crafted ensembles:
I am a little concerned that there will be some type of crazy emergency that I will miss at night because my hearing aids will be out and I will be unable to hear any alarms or announcements. I then realize that everyone else in the hotel with me likely relies on some type of technology to assist them with their ability to hear and process the world. This thought made me laugh and made me feel a little better.
Maybe I should bring Rocky? Is the hotel pet friendly? He would be handy to have around if there are noises that I can’t hear overnight – but then I remind myself that sneaking in the world’s most unruly dog disguised as an emotional support animal is a very ill conceived plan – because he needs an emotional support animal for his own well-being.
I should get hard copies of the hotel room key just in case the cell phone electronic key doesn’t work – as it has never worked for me, so far.
Do I bring a frying pan to keep under the bed in case of an intruder?
I have to remember to take a picture of the number of my room. The last time I traveled, I barely paid attention to this important detail, figured I would remember it, and embarrassingly roamed the hall of my floor (which I blissfully remembered) trying to find my room. I finally relented and slunk down to the front desk to confess that I had completely lost my way. Can’t have that happen again.
I have to remember to pack my travel alarm clock that shakes the mattress – what if I don’t wake up in time? Should I schedule a wake-up call? And then I remember that my hearing aids will be out – so there goes that option. Luckily, we’re presenting in the late afternoon so if I oversleep I’ll make a fabulous entrance at some point.
We have to split up snack purchasing responsibilities – we can’t be without our standard “Hearing Things with Julie and Brad” snack collection. I have to remind Brad to pick up Ghost Pepper Chips at Trader Joe’s when he goes before the conference. I better tell Brad to get a couple of bags of our fave spicy chips – we’re not capable of rationing one bag over a weekend.
THE NIGHT BEFORE WE LEFT:
I tried. I really did. But the near ridiculous amount of hair products, heat styling tools, shoe options, and toiletries took up half the suitcase. Hence the giant red suitcase as opposed to the daintier, smaller option. I envy the people that can pack for a weekend with just one tiny bag and a computer bag (looking at you, Brad!). I have packed 4 cherry chapsticks. (I hope that’s enough – but hopefully Brad has his coat with him that has my secret stash in one of the pockets…)
Thankfully, the hotel has an option for virtual check-in – which I did – and loved the ability to pick my room. As a woman traveling alone(ish), I needed to be strategic with room placement, and was thrilled to find one near the elevator on a high floor.
THE MORNING OF THE TRAVEL DAY:
I woke up with a headache, sinus pain and nausea. This was not how things were supposed to go – some Advil, Gatorade, dark chocolate, and Flonase knocked it all out by 10:00 a.m., thankfully. I was feeling pretty good, had a full work day ahead before I left for the conference and was grateful for the distraction. I almost forgot my flat iron – and for anyone following us, you know that my hair is A Whole Thing. I finally picked it up (still hot to the touch) and never let it leave my left hand until I walked out to my car. I can forget my hearing aids, but not my flat iron!
TIME TO GO:
Due to our work schedules, we were commuting to and from the event in separate vehicles which was probably a good thing seeing that Brad requires some quiet decompression time after work while I need to vent about my day, share funny anecdotes, and generally relish in conversation with other grownups after spending the day with my students.
As Brad will tell you, my navigational skills are not the best – Lewis and Clark we are not – and as he frequently drives us places, I am stuck with the GPS. The infamous and confident declaration from me (sans glasses) of “Get off at exit 58” was met with a measured, controlled statement of “I think it’s 5B” from the driver (we were at exit 4). (I don’t know how – or why – he puts up with my nonsense. I’d have lost patience a long, long time ago in a galaxy far, far away).
Off I went, music blasting, confidently following the GPS in my car – and I was fine until I got on the highway with 25 miles between me and my next exit. Panic started to creep in, followed by, “What in the hell are you doing right now!?” and ended with “Well. If you freak out, you can drive home because you’re not that far away…” Spoiler alert: Guess who missed the exit to get on Rte. 495? This girl.
I pulled up to the hotel, luckily grabbed a spot near the entrance, and decided to dash in and check-in, first, before lugging the ridiculous amount of items I have traveled with into the lobby where I will surely drop them all and cause a scene. Best to figure out the “lay of the land”, as it were, first.
Check in was fine until I was told to “put the car you will be using this visit into the terminal”. I paused, searched my brain for what the outside of the hotel looked like because I was fairly certain I didn’t see a parking garage or fancy parking lot or anything that could even remotely be termed as a “terminal”. I was met with a blank stare from the clerk at the check-in desk. I returned her blank stare and then stated, “Where do you need me to put my car? I parked right out front to the left side? Is that incorrect? I didn’t see a terminal when I pulled in?”
She gestured downward to my hip and said “Card. Put your CARD in the terminal”. I glanced down and saw the credit card payment machine – for lack of a better term – and realized my error. I normally glaze over an uncomfortable mishearing and I almost never apologize for it – but this time I felt the need to explain my thinking, that I thought she had said “Car”. She laughed awkwardly and I couldn’t help myself – these words came flying out of my mouth: “You better get used to this type of interaction because there are about to be A LOT of us here with hearing loss very soon.”
I returned to my car, retrieved my cooler bag (remember, allergies); suitcase; backpack; garment bag; and bag of the traditional Hearing Things snacks ™. I piled it all on me and after a few hesitant steps forward and stuffing down my common sense that I should either do two trips or wait for Brad to show up and give me a hand – I made it through the lobby and up to my floor without incident.
WON’T YOU BE MY NEIGHBOR?
As good luck would have it, we were next door neighbors! Our rooms were right across from the elevator – the worst location according to all of my typical hearing friends. Turns out, it was the best location for us! Make all the noise you want, late night revelers – we can’t hear you! The convenience of being right at the elevator was also great for the frequent dashes I ended up doing up and down and back again the first day of the conference for a variety of reasons. The close proximity made it so simple to dash back and forth for snacks and seamless transitions to flopping down and watching the Sox and Bruins while doing our nightly, snack laden rehash of the day events. I think there was a comfort for both of us, too, being right there in the event of an emergency. Unless it happened at night…in which case it was a fruitless exercise as neither one of us would be able to hear the other one pounding on the door or the wall. We learned quickly that if we were looking for the other one, knocking on the door didn’t work even with our “ears” in – so we resorted to texting each other “knock knock” to alert that we were outside awaiting entry. We will have to come up with a system next time or get rooms with adjoining doors from the inside to have that added safety measure in the highly unlikely (but still possible) event of an emergency.
DROPPED INTO THE (DHH) DEEP END:
I have been gifted with the ability or curse, depending on how you look at it, to be able to converse with literally anyone, on any topic, anytime. This skill came in handy at the cocktail reception (the name tags also helped immensely because it was easier to glance at the name tag and open with the person’s name). I was blown away by how friendly everyone was, and also was taken aback a bit by how forward people were in asking me about my hearing loss. This was new, uncharted territory for me as usually I’m surrounded by people who either already know my story, know me well enough to ask whatever they want to know, or are very anxious
about the whole thing and would rather make a joke or say nothing at all. Not the case in a room full of deaf and hard of hearing people.
Here were a few things that happened:
I was met with shock more than once that I did not know ASL or that my family did not learn ASL when I was growing up.
Not a single person held back on asking me about my “hearing loss story”, and then asked detailed follow-up questions.
I was in a room where most of the attendees had hearing loss and were aided by assistive technology including hearing aids and cochlear implants.
I was surprised by the number of people I spoke to that had hearing aids and then transitioned to cochlear implants – I was encouraged by their positive experiences but still not sure I can even consider that decision right now. Fortunately for both Brad and myself, this is not a decision we are faced with just yet.
I found myself still relying heavily on my auditory channel and lipreading when listening to the presenters, which was not something I anticipated considering the caption display and ASL interpreters.
There was a “communication board” on an easel – a place to put information on a post-it note if you were looking to connect with someone, were in need of assistance, or wanted to leave your contact information.
We all had lanyards with name tags hanging on them stating our name and affiliations. The number of times people approached me, picked up my name tag first to confirm my name and then began speaking took a little getting used to, for sure.
I’m horrible at accommodating DHH people. Absolutely horrid. I kept talking when people turned away, I would default to speaking at a conversational tone because I am not used to having my voice increase in volume, and I spoke at a very rapid rate.
My rate of speech is fast (I’m an Italian from Boston!) and even though I made a deliberate effort to slow down during our presentation, the ASL interpreter informed me afterwards that I went way too fast – and I wasn’t allowed to have caffeine.
I am not used to having to rephrase and repeat myself to others, and I found it draining. I have a new respect and appreciation for those that accommodate me continuously.
I learned that a common way to get someone’s attention was to wave with your palm down, as a nonverbal visual cue, as opposed to physically approaching someone and tapping their arm or shoulder. This was new to me, and I liked it alot better – even though at first glance I thought it came off as a little rude to be waving in someone’s direction instead of calling their name. Then I remembered where I was.
I was exhausted. The schedule was packed with speakers and sponsors, and while it was all very interesting and informative – the listening fatigue set in for me by lunchtime. I was able to retreat to my hotel room for about 20 minutes during lunch, which afforded me the chance to review our notes prior to our presentation a few hours later. It was not long enough of a time for me to regroup and reset. I require a short nap almost every afternoon after teaching a full day – but sitting and listening to speaker after speaker was too much for my system. I was definitely on overload, and was experiencing something similar to what Brad goes through when he has an “introvert hangover”.
I felt pretty good about our presentation, there are some things we would have done differently if we had the chance to go back in time and do it again. I tend to be my own worst critic, so this is par for the course. Hopefully, we will have a chance to bring our “show on the road” with increasing frequency!
I really enjoyed the chance to “hang out” with some of the other HLAA Boston folks – and look forward to getting more involved in the efforts of that chapter.
I heard the phrase, “Between two worlds” – finally I had a clear way to describe how I felt as someone with a hearing impairment in a world not designed with my needs in mind. Finally.
THE WIND DOWN:
Due to a schedule shift for personal reasons, I was unable to attend the final day of the conference, but true to form I shared a “To Do” list with Brad via text – the irony of the introvert needing to take on the extrovert’s job and follow up with people and hand out business cards admittedly made me laugh. We haven’t had a chance to sit together and talk about our experiences after some time has passed, but from my vantage point we are fantastic travel partners. This harkens back to our ongoing open and blunt communication skills (we talk about EVERYTHING), our collaborative skills, and our comfort with coming together to hang out and separating to make our own connections and have our own experiences. I think it went well – and am curious to read Brad’s impressions!
We were briefly introduced upon his arrival in my backyard. I had no idea how introverted he was initially or I would have had a greater appreciation for the sacrifice it took for him to enter the carnival atmosphere that defines our legendary July 4th BBQ! On the rare instances I was able to circulate amongst guests and land at the table where he was sitting, I distinctly remember thinking, “Does this man talk?”
Brad:
I believe my first thought, as the overlapping conversations wove an unintelligible buzzing tapestry of sound in the backyard, was “How in the hell does she do this every year!?” When her hosting duties brought her Brad-ward, I saw something I recognized: a delay. That delay told me that she may do this every year but she does so with much effort and a little bluffing. There were pauses in our brief conversation that told me she only caught snatches of what I said. Which was a-ok by me. The catching was mutual.
Is this someone that you would have been friends with if you hadn’t been introduced?
Julie:
I let a cackle slip out when I read this question – because the mere thought of us even approaching one another in any situation is laughable. This is not a mean spirited statement, but rather a statement of fact due to our absolutely opposite personalities, socialization habits, and activities that we define as fun. For example, Brad is happiest out on a wooded trail alone with his thoughts (for reasons I will never understand). I am at my most gregarious and content when surrounded by family and friends at a football tailgate in the midst of an energized crowd, which would prompt Brad to break out into hives. So, without an introduction, there is no way we would have ever organically crossed paths.
Brad:
Honestly, no. As introverted as I am I would have had a hard time not getting drowned by her firehose personality. But then again, timing is everything. I’d just recently started talking about my hearing loss. Even if I weren’t as observant as I am, those sparkly pink hearing aid moldings are tough to miss. I very well might have struck up a conversation on our shared struggles.
What accommodations do you do for one another – either hearing related or otherwise?
Julie:
In the early days of this partnership, I found myself hyper aware of not only Brad’s hearing loss but his introversion. We move through the world in completely opposite fashion. It was a huge learning curve for me to figure out how to orbit around one another. I recall that the first time we spent a full workday together I was overly conscious of speaking louder, carefully enunciating, speaking at a slower rate, and trying (really trying) to not talk too much to spare his quiet system from hurtling into overload. As this project evolved, we learned quickly that we both placed equal emphasis on maintaining open communication with one another, which supported implementation of necessary accommodations and habits. We were polite with one another at first, but have reached a direct approach that involves a lot of shorthand language to convey what the other one needs – and is basically indecipherable to the casual listener. For example, “Louis! Your ear is red. Food? Move to the left! Off a cliff – let’s go.” – but it works.
Brad:
I’m very deliberate in my speech. I make sure I speak clearly and always face her. It’s something I’ve done my whole life with my dad and something I’ve done for the last year with my fellow HLAA members. But it’s not something I even think about with anyone else. I also keep my beard and mustache trimmed. I know that obscuring my lips can make lip-reading challenging, if not impossible. I’ll never have a ZZ Top beard and not just because my hair is curly it grows out not down.
What has been the easiest part of this partnership?
Julie:
The ease of communication about everything – we are very comfortable with broaching difficult topics, handling the rare disagreement, and being open about our personal feelings, perceptions, and emotions. There is a level of comfort between us that was unexpected considering how we are polar opposites in every way imaginable. We are fortunate to have arrived at a level of mutual respect and trust in such a short time, as it is critical to the work that we are doing together.
Brad:
Communication and organization. We’re both excellent communicators. This is not something to be undervalued. I know a lot of people that are poor communicators. Some take forever and a day to get to the point, some are inattentive and thus poor communicators, and some are dishonest out of disrespect or fear. We’re both honest and open. That doesn’t mean we always agree but at least we respect the other’s point of view. And as the project sprouts new vines, our organizational skills are helping that communication. We take turns organizing our thoughts in a Google Drive. Frankly, it’s a bit overwhelming to see how much we have organized in there!
What has been an unexpected challenge of this collaboration?
Julie:
I cannot think of a single unexpected challenge which is likely due to our ongoing negotiating, compromising and making joint decisions together about literally everything. I know that we both wish for unlimited time to work on our project as we are growing quickly and have what I refer to as “tentacles” branching out in a million different directions. Fortunately, we are both committed to this partnership and believe in our work deeply. The passion and enthusiasm for what we are creating ensures that the time we do have together is productive and efficient due to our strong communication abilities, organizational skills, and slightly twisted sense of humor.
Brad:
Finding balance. My default setting is sitting and reading. But I feel so strongly about destigmatizing hearing loss that I’ve gone into activism overdrive. What started as something to help me do my job, grew many other tentacles. The second of which was volunteering for the Hearing Loss Association of America’s Boston chapter. Then, a few months later, I met Julie. Boom. Another tentacle. At the beginning of this year, I added another by becoming tech support for an HLAA regional conference. It’s been as exhilarating as it has been exhausting. I overextend myself very easily because I love to help people. It’s literally what I do for both work and fun. It feels great to be able to help others have the information about hearing loss that I didn’t have growing up.
But now I’m helping in so many ways that I suffer from an introvert hangover almost weekly. I know I can’t help others if I don’t take care of myself. The world is as harsh to introverts as it is to the hard of hearing. I’m working on finding balance to give myself the solitude I need, to find the balance between burning bright and burning out. The show is a blast and Julie has become not just a great co-host but also a great friend. As I struggle to find the balance, our aforementioned communication skillz (they very much warrant a z!) are incredibly helpful. I’m weebling and I’m wobbling but I’m not falling down.
What is your partner’s greatest strength?
Julie:
There are many, but if I had to pick a few, I would start with his genuine compassion and empathy. He exudes kindness and concern for everyone that crosses his path, while I tend to reserve my care and investment in people until I have had the chance to get to know them a bit longer. Another strength is his ability to calmly and rationally bring me back down to the ground when my grandiose visions and enthusiasm for all the things gets a bit carried away as does my desire to have everything finished in the next five minutes. Lastly, he loves dogs which was the number one requirement if he expected to remain in my company.
Brad:
Bravery. She’s unafraid to speak her mind, to try something new, to offend someone. But she’s not arrogant nor cruel about it. My hearing loss always gives me pause. I don’t like to step out of my comfort zone. I know my discomfort is, in part, due to my introversion. But my hearing is the other part. It’s never held Julie back. I’m in awe at how she’s never let it do so. Be it an adventure or a comment, she does or says what she needs. I literally could not do this show without her. Her bravery and energy are at the heart of Hearing Things with Julie and Brad. She’s constantly unearthing new tentacles we can reach out with and showing me how wide our reach could be. I know I’m there with her but I also know I could never be so brave alone.
What part of the D/HH experience has been improved by this partnership?
Julie:
As the lone hearing impaired person in my family, friend group, workplace, and general life orbit, the value of having someone that completely understands my triumphs and struggles has been life changing. My family and friends are incredibly supportive and understanding as possible, but having someone that lives with hearing loss and hearing aids that can offer relatability and empathy is irreplaceable. I have a stubborn streak and resolve within me that has largely pushed my hearing loss to the side for the majority of my life. I always believed that acknowledging it fully and seeking support from others that have the same challenges was a tragic character flaw. Brad has slowly encouraged me to become involved with the Hearing Loss Association of America’s Boston Chapter. This was a major turning point for me as I have resisted participation of any kind in the hard of hearing community. I remain cautious and a bit hesitant, but plan on trying out a few more meetings and events to assess if this is a place for me to make connections and seek support.
Brad:
There’s a word that’s often heard in equity, diversity, and inclusion (EDI) circles; intersectionality. It aims to show how no one person is defined by any one trait. I first learned of the word in Ijeoma Oluo’s So You Want to Talk About Race. The intersectionality we focus on for the show is where our hearing loss and our bibliophilia meet. The conversation about hearing loss needs to be louder (#sorrynotsorry). But that doesn’t mean that’s all we have to talk about. I love reading because it helped me get through school before I had my bionic ears. I love reading because it helps me recharge my introvert battery. I love reading because it’s a break from active listening. I’m confident that some of our followers love reading too; if for other non-hearing-related reasons. And because they do, it allows them to relate to us more strongly. And I hope this intersection of hearing loss and reading will help get more people thinking and talking about hearing loss. (Side note: I first heard EDI called DEI. I thought the change in word order was pointless. Until I had a beer. Kabron Brewing Justice Equity Diversity Include IPA; or JEDI IPA. The Force is strong in them!)
Have you changed any of your D/HH personal routines or technology needs as a result of your work in this collaboration?
Julie:
Absolutely! I recently learned that my iphone has an open caption option in the settings, and have been fiddling around with that feature with my students to see if it can maximize my ability to converse with them in a small group setting. I have downloaded a few caption apps as well, though have not explored them in great depth. I am pursuing a 504 accommodation plan through my workplace to ensure that I have access to a wireless microphone to assist me with hearing in-person, large group meetings as well as other physical space considerations. I have always been a strong self-advocate, but I am incorporating more technology which has been to my advantage as my hearing continues to decline.
Brad:
Not changed, exactly. But I’ve grown more confident in speaking up for my needs. Both in the moment and beforehand. For so long (too long) I’ve internalized the message that my hearing loss was my fault. If I didn’t hear someone, I wasn’t trying hard enough. I took to wearing a button at work that says I’m hard of hearing. But that was a passive thing to do. Over the past couple of years, I got more than a few patrons who have used their tech help sessions to talk about hearing loss and hearing aids. My collaboration with Julie bolstered my bravery and I’ve started a monthly hearing loss tips and tricks program at my library. I also hooked the library into WHO’s World Hearing Day by working with my Youth Librarian to put on a special hearing loss storytime as well as bringing a hard of hearing speaker in to talk about her journey on that day. I don’t like the spotlight. I don’t think I ever will. But this collaboration has allowed me to grow more comfortable in it.
I challenge my DHH partner to do the following:
Julie:
I dragged that man out in the rain without his hearing aids in (which was among the worst ideas I have ever had) and then promptly followed it up a few months later with an absolutely miserable experience in the rain (again) at a Boston College football game. (I am shocked we are still speaking). Naturally, my next challenge must involve our sworn enemy – water! I am throwing down that this summer we will take a speedboat tour in Maine – bring your hearing aid case, Brad, this is happening!
Brad:
I was tempted to say something punny like: take a hike. Or maybe even: be ok with introvert days. But the former isn’t serious and the latter isn’t necessary. Our extrovert-introvert dynamic is one of the things that makes us successful. Instead of saying those things, I’ll say: take a more active role in HLAA.
She’s already started. By the time this is published we’ll have presented at a regional hearing loss conference, But in true introverted fashion, I urge her to take her time and get comfortable with the idea of being more actively engaged in a community she’s intentionally avoided. There’s a lot to work through, there’s a lot to adjust to. So, as she organizes her thoughts and plans on how to get involved in the HLAA, I’ll urge her to heed the words of Roman Emperor August: “festina lente”. Or for those of us not fluent in Latin: hasten slowly.
There is an indescribable level of anxiety when you need to wait for your name to be called or your number to be declared – and in our world, there are so very many instances of this system being put in place – from waiting rooms, the deli counter, the DMV, restaurants, and karaoke to name just a few. This week, I recalled a core memory of mine when I was in a situation where my name could have been called, however unlikely. The anxiety I felt then is akin to the anxiety I feel now – especially when I am on my own without someone with typical hearing to help me not miss the verbal summoning or even having Brad there because between the two of us we can sort of hear something collectively. I wish I could say that things have gotten easier – and in some ways they have with the advent of technology like buzzing pagers for restaurant waits or numbers displayed on a screen – but for the most part, we are still defaulting to auditory channels without visual support.
I was clad in jeans, blue sneakers and what I deemed as fancy and high fashion at the time – a turquoise blue jordache brand sweatshirt complete with the image of a horse on the front with fancy fringe dripping down the mane.
Welcome to 1985.
I was in the 5th grade, seated in the middle rows of an already crowded gymnasium, where the stuffiness and humidity sent up a sour odor of too many students in too small a space on too hot of a day. I was already uncomfortable for a myriad of reasons: my horrendous “Dorothy Hamill” bowl cut was starting to frizz as the curls of my hair were beginning to respond to the humidity, and I distinctly recall the feeling of just having had enough of it all – the weather, 5th grade in general, and sitting in that gym not hearing a thing, per usual.
The acoustics were horrible.
I was daydreaming, as I am wont to do even today, courtesy of the combination of ADHD (finally diagnosed as an adult to the shock of no one) and hearing loss. I did not have the words for it at the time, but the constant fight to hear the world around me involves active listening – a never ending jockeying for position in a world not designed for me. The combination of lip reading, eye contact, self disclosing my hearing loss, and positioning myself physically around people led to a visceral response that I have now come to know as “listening fatigue”. In short, I was done, and escaping to my inner thoughts was far preferable than continuing the farce of attempting to listen, respond, and react to the activity around me.
There was a raffle happening at the front of the gym. I barely registered that names were being pulled from a circulating drum that looked like an oversized hamster wheel, whose inhabitants were not animals but slips of paper with student names. The garbled names were spoken into a microphone, and the sounds then splattered into the air of the gymnasium, impossible to understand. I was already exhausted, happily ensconced in one of my imaginings, when I was jolted back to reality by the sharp jab of an elbow into my side by a classmate seated next to me. I whipped my head to look at them, ready with a defensive physical reaction of my own, and they told me “They called your name. You have to go up. You won.”
Time slowed for me in that moment as I was not completely confident that I had heard what my classmate had uttered. I looked around me for clues in the environment that may provide clarity, and saw what felt like everyone in that gym staring at me, waiting expectantly. I stood shakily, willing my legs to carry me forward to the front of the gym. As I gingerly picked my way through the crowd of students, praying feverishly that I would not fall due to an already compromised vestibular system, I felt my face redden at the attention. I willed the world to swallow me up but the closer I got to the front of the gym, the more I realized that all eyes were on me.
I approached the adult with the microphone, who offered me a medium sized yellow box. They smiled warmly and said…something. I couldn’t hear them and was too mortified to be front and center to even attempt to engage in any dialogue. I took the box, and made the agonizing return trip back to my seat.
A wave of relief washed over me when I squeezed back into my spot, lowering myself to the floor. I was grateful and overwhelmed that I had made it to my initial position of anonymity amongst the throngs of students, and almost immediately drifted back to my safe space in the floaty clouds of my imagination.
I had no idea what was handed to me, I never looked at the box.
Later, back in the classroom, at the urging of classmates, I finally looked at it – it was a mask making kit.
How appropriate for someone that was constantly trying to blend in with the crowd.
For the past 42 years, The Dark Crystal has lurked in the dark and dusty margins of my childhood memories. I have remained steadfast in my blatant refusal to watch this movie now that it has captions, a feature notably absent from nearly all media offerings back in the summer of 1983. The very thought of even laying my eyes on this film again raises bile in the back of my throat and triggers my fight or flight response.
I finally relented my position in my personal standoff against this movie, and decided to watch this cinematic work in order to move past my energy sapping vendetta and to see what the fuss is all about with this film. I decided to step over my long-held picket line for the purpose of the work that Brad and I have been doing through our “Hearing Things with Julie and Brad” multi-layered collaboration.
Brad’s brother, Tom, generously located a captioned version of The Dark Crystal, and on a winter evening I trudged over to watch this godforsaken movie with a thinly veiled scowl on my face. I grabbed the now infamous “Hearing Things with Julie and Brad” emotional support Star Wars notebook, and my favorite blue pen. I figured that I would approach this surely to be a miserable event with the enthusiasm of sitting through a lecture about a non-preferred subject. I knew that I would have to pay just enough attention to gather notes and maybe with this singular purpose I could minimize the disdain I felt as the opening credits began to reveal themselves on the screen.
From the first line of the movie, I was thrown back to the drive-in theater on Cape Cod in the summer of 1983. I was a little girl again, optimistic and excited to see my first movie from the family van. I could feel my two long ponytails swishing over my shoulders as I wiped my greasy popcorn stained fingers on my terry shorts. I once again felt myself sitting up straighter, waiting for the movie to start, and immediately felt the flash of frustration, grief and acceptance that the tinny and garbled sounds coming from the low quality speakers attached to the side windows of our vehicle were insufficient for my little ears to pick up and comprehend, even with my little kid hearing aids firmly in place. I felt my eyes squint once again behind my horn rimmed glasses, staring at the screen through the windshield, desperately trying to lipread the muppets to try to figure out what is going on in the movie despite being unable to hear it at all. I felt the deflation of my 8 year old body as I accepted that while my family watched the movie, it would be best for me to retreat to the back seat with a flashlight and my ever present pile of books.
In the present day, on the corner of “my spot” on the couch, I felt hot tears pricking at the corners of my eyes, which I fought back quickly. I knew if I did not regain my composure I was going to dissolve in a puddle of tears. Luckily, neither Tom nor Brad caught my eye and thus remained blissfully unaware of my reaction to the start of this movie and the ensuing flashback. I was shocked by the waves of sadness and anxiety that flooded over me, I did not expect that visceral reaction.
As the movie progressed, and the flashbacks continued, I realized that the character voices were incredibly difficult to understand even with the caption supporting the dialogue. The voices were garbled, guttural, and unclear as the characters spoke in indeterminate accents. At one point I was unsure if I was just reading the captions and tuning out the auditory component. I forced myself to ignore the captions and just listen to the characters to see if I could understand them without the text backup. I was not able to make out a single word clearly, but Tom was able to understand them perfectly with his typical hearing. I was unsure if my inability to hear high pitched sounds and my diminishing ability to hear speech clarity was to blame, but then reached the conclusion that the cause mattered less than the fact that I could not hear them.
I attempted to “lip read” the puppets, and just as they live on in my memory, their lips opened and closed like a lid on a hinge. I watched the mouth of Jen, a humanoid character, and noticed that its mouth formed a shape akin to bubble blowing and then stretched out in a straight line while speaking. There was a little bit of lip movement but not enough to create discernible speech.
As the film continued and the storyline evolved, I realized that the crystal was not the only thing dark about this movie – it dealt with complex themes including eradication of populations, death, and slavery amongst others. This was a film that was multilayered and what a child may have seen as entertaining and a hero’s quest, as an adult it was heavier than anticipated and a deviation from what I know as the muppets – Kermit and Miss Piggy were nowhere to be found in this saga.
A bright spot was the character of Augrah – she is impossible to describe, but I am convinced that she was loosely based on my personality. My watching companions dissolved into giggles when I mentioned that I identified strongly with Augrah – I knew they were thinking the same thing and didn’t dare say it aloud! (For the curious, here is my favorite clip of Augrah absolutely handling business with a gleeful tongue lashing – and for those that know me well, this may look more than a little familiar: https://youtu.be/rGLcQxDLEeI
The movie finished, and as the credits rolled, I felt compelled to find the date when it became mandated that new media be closed captioned. I was shocked to learn that the date was January 1, 2006 – 23 years after my devastating experience at a drive-in theater. I was hit with a wave of emotions ranging from disbelief to sadness to frustration at all of the experiences that I was shut out of and how the solution was for me to make an adjustment to another activity or “do my best” to enjoy the experience in spite of it being completely inaccessible. I am thrilled that things are changing, however slowly, but the rate of progress is completely unacceptable. I was unable to articulate all of this to Tom or Brad at the moment because I was desperate to avoid a complete meltdown, so held this information to myself until I was able to return home and commit it to writing in this blog post.
Overall, I am glad that I was able to revisit The Dark Crystal, but if this was not connected to our project there is no way I would have opted to view this movie of my own accord.
I wish that I could reach back in time, gather that little girl in a hug, and whisper to her “It gets better, I promise.”
Deaf, But Not Really: My Story 