Deaf, But Not Really: My Story

I have sparkly hearing aid molds. They are amazing…and ordered from the children’s catalog, much to the horror of my audiologist who eventually acquiesced and let me have a little bit of fancy!  (I am obsessed with Cher and Ava Gardner – and I have decided that if they had to wear hearing aids, they would have some serious glitter…keep your judgments to yourselves..) 

As fabulous as these molds are there is a completely disgusting side of wearing hearing aids day in and day out that no one ever really talks about in polite company. As we know, I have little regard for societal niceties, so get ready for a trip down the canal of disgustingness. (Oh, and if you’re the “squeamish type?” Too bad – keep reading…I have to deal with this nastiness, the least you can do is learn a thing or two!)

The unassuming, delicate and sensitive skin inside my shell shaped, perfectly formed ears plays host daily to unwelcome visitors – my hearing aid molds.  For the curious, hearing aid molds feel like well-fitting and very tight ear plugs that you may wear swimming…except that you are wearing them all the time, in all kinds of weather, with minimal opportunities for relief.  

My ears are constantly plugged up like a storm drain regardless of what is happening outside, but every shift of season triggers a litany of complaints and physical discomfort as my poor ears prepare for the onslaught of ailments presented by the weather.

Winter is coming. 

The arrival of the extreme cold – that biting air that chaps your lips, burns your corneas, and turns your cheeks a shade of crimson – wreaks havoc on the inside of my ears. It is a misconception that the molds offer some type of protective barrier as this is most decidedly not the case.  I remove my molds at the end of the day and the level of itchiness that springs forth is often too much to bear, and by mid-winter it takes every ounce of already waning self-control to not attack my ears with the ferocity of scratching typically reserved for horrendous bug bites, chicken pox, or poison ivy (technically all things you probably shouldn’t be scratching in the first place!). I can rub and massage the interior skin of my ears all I want, but the relief is so short lived that it’s almost cruel.  I inevitably grab a cotton swab (Q-tip) and launch an attack which then triggers the flaking.  I’ve often looked at this horrific dry skin falling out of my ears and imagined what it looks like and how I could describe this to someone that has never had the distinct pleasure of experiencing this delightful phenomenon. I have, so far, come up with this non-exhaustive list of descriptors: small snowflakes; oatmeal crumbs; protein powder; crushed aspirin; cheap off-brand sugar; talcum powder; and wood shavings from a hamster cage.  It’s gross.  I know it’s gross – but in all of its disgustingness, there is something inherently satisfying in attempting to illustrate it for the non-sufferers. #sorrynotsorry

There are a few remedies that I rely on in the winter months for some extended relief, however temporary. The first is a warm washcloth – not too hot, not too quick to cool – to massage the interior of my ears.  It instantly soothes the angry, inflamed skin and on the freezing days, warms me up from the inside out.  My ears turn a really cute and fashionable shade of pink, however short lived. 

The second is the slimy, cooling, and understated powers of hydrocortisone cream.  This magical poultice is applied in a thin coating to the delicate membranes of my ears, magically moisturizing the irritation and providing near instant calm and relief to my tired, tortured ears.  The flip side of this is – of course – the collection of goo now residing inside my ears. It is disgusting. Want to experience the sensation for yourself? Wet some play dough, dump some slippery dish soap on the top and stuff it inside your ears – that’s what it feels like…totally disgusting. Productive, relieving and comforting – but beyond disgusting.

And now, I brace myself – for I can feel the weather turning. I have readied my trusty pile of face cloths and industrial sized tubes of hydrocortisone.  My new package of Q-Tips are open and poised for action. And now we wait…to do battle, once again, with the fury of a New England winter.

(And one last word on the topic of Q-Tips being frowned upon, banned and railed against…I will continue to use them faithfully and with gusto! Why would I stop? Because of the risk of hearing loss? People, please.)

With tightly laced hot pink figure skates adorning my feet, off I went with unbridled confidence, gliding smoothly across the ice tossing in a few swizzles and twizzles, nailing a triple salchow and ending my routine in a perfect Hamill Camel. I gathered the teddy bears, the flowers, and basked in the applause – but moved quickly off of the ice for I needed to do a quick change before the next event. 

I tossed my hot pink figure skates to the side, and scrambled into my hockey gear and heavy skates with the thick blades. I rushed to join the team, wrestling my way to the front, while elbowing Jim Craig right out of my way (those goalies just take up too much space). I managed to catch the end of Coach Brooks’s now epic speech. His words rang in my ears as I jostled my way to the entrance of the rink… “Their time is done. It’s over. I’m sick and tired of hearing about what a great hockey team the Soviets have. Screw ’em. This is your time. Now go out there and take it.”

I startled awake, momentarily confused that my now 50 year old self was rising from sleepiness in 2024 in Massachusetts and not in the 1980 Lake Placid Olympic Village with multiple medals heavy around my neck. I had nothing to show for my Olympic dreams except a few pictures of me sporting the now ubiquitous “Dorothy Hamill Bowl Cut” most girls suffered through in the 1980s hidden away in faded photo albums, determined to not let them see the light of day. Ever. 

I did spend some time on skates as a child, and each time I greeted the experience with a renewed optimism that this time would be different. I would be spared the humiliation of immediately falling after one step on the ice. I would not have to hold on to an adult to even try and move a little bit. I would be able to let go of the wall and join my friends freely racing across the ice with little fear. I’d be able to spin and stop on the frozen pond alongside my cousins. I would finally have a few moments in my life where I truly was “just like all the other kids”. 

Those moments never came. 

Each venture onto the ice was the same. I would get my skates on, tied up and ready to try again with an innocent wish that this time I will be able to do everything that comes so easily to everyone else. I would cautiously toddle over to the entrance to the ice, take one cautious step, and immediately start to slip around. I’d panic and grab onto the nearest grown up or the wall, whichever was closer. A few more unsuccessful starts and stops nearly always relegated me to clinging to the wall in desperation. I’d then plaster a smile on my face, make a few jokes, and send my friends and family off to enjoy their time skating while I hesitantly hedged myself along the perimeter, the wall my only companion for the duration of the outing. It was awful, and by the time I hit my early teen years I accepted that skating was just not going to happen for me, and that my time would be better spent as a rabid hockey fan in the stands. 

My Mom was a skating instructor. My Dad was a skilled athlete. One would logically deduce that my genetics lent a high probability that I would be able to skate, ski, ride a bike or take a few steps on a balance beam. 

One would be so, so wrong. 

Let’s blame the hearing loss. 

In all seriousness, hearing loss and issues with balance are closely linked through basic biology. The auditory and vestibular systems are neighbors within the inner ear, and when one system is damaged, the other is also impacted. 

A brief bit of research yielded a few interesting tidbits that lends some explanation as to why those of us with hearing loss experience such difficulty with tasks requiring balance: 

• Loss of hearing can muffle subtle cues that our ears register to support balance while walking. This reduced awareness of cues impacts balance skills while in motion. 
• The cognitive load required for the brain to work overtime to process sound leaves little mental energy reserves for balance-related sensory input. 
• Physically, hearing loss can lead to changes in gait and/or posture, which naturally impacts overall balance and increases the risk of falls. 

Additionally, unrelated to hearing, as we age our sense of balance also decreases while fall risks increase. I had my left knee replaced in March 2022 – and at my follow up appointment, the surgeon said to me “Well, Julie, your skating, skiing, rollerblading, and running days are over – you need to avoid any activities where you may have compromised balance”.  I tried to screw my face into a disappointed expression in an effort to disguise my inner glee at this news – the end of days that had never really started, but at least now I had a better excuse than my hearing loss to not have to even attempt any of those hellish recreational activities. (I have added hiking to the list, too – not necessarily because of balance, but because it also sounds like the 7th circle of hell.)

I avoid ice skating, but I do have to contend with the dangers of ice each and every winter. I have a near crippling fear once the first frozen patches appear on the steps and driveway, as there is no wall for me to latch onto as I make my way to my car, my front door, or the entrance to the school where I teach. My anxiety ratchets up to 10 immediately, and even though I wear boots with sensible grips, take my time, and walk on the hard packed snow whenever possible the feelings of terror never leave. 

I am already a fall risk due to the hearing loss and the employment of one titanium knee but the greater danger beyond injury is falling in such a way that my hearing aids will get damaged on impact. They are fragile machines, precariously teetering over the top of my ears, and one slight misstep or slip increases the possibility of them sustaining significant, irreparable damage. The implications of a damaged hearing aid adds a level of terror each winter season. I grapple with removing them, housing them in their shatter proof case and placing the case inside my school bag or pocketbook for the duration of the outside navigational periods. A logical plan, to be sure, but I then compromise my safety in a different way because I am unable to hear moving vehicles or people around me – this also increases my feelings of anxiety.

The dangerous winter months are descending upon us at the time of this writing, so I shall retreat into hibernation as often as possible to avoid navigating the treacherous landscape that lies outside the door. I will enjoy the ice from the comfort of my couch watching my favorite B hockey teams: the Boston Bruins and the Boston College Eagles – with a favorite B event, The Beanpot, coming up in a few short weeks – where the ever satisfying beatdown of Boston University awaits. 

Author’s Note: Brad chose to aggravate me by sending a chart of past Beanpot statistics…that NU Husky never misses an opportunity to aggravate this BC Eagle…let’s see what happens come February!

This week, we decided to write a “getting to know us” post! We each answered 5 questions about ourselves – and there were a few surprises! Enjoy!

1. If you could have dinner with any historical figure, who would it be and why?

I am confident that Brad will respond to this question with an inspirational, intellectual and well-informed choice.  

I will not.

My pick is Ava Gardner – a screen siren of the Old Hollywood era and my favorite actress. At a time when women were expected to be dainty, demure, and content with keeping a home and raising children, all the while deferring to their husbands – Ava spit in the face of convention. She had rollicking affairs, swore like a longshoreman, threw back drinks merrily, and didn’t give a great goddamn about any of it. She reveled in the knowledge that people were speaking disparagingly of her and found it endlessly entertaining. To quote her long time friend, “Ava was a dedicated contrarian – someone you could depend on to do whatever she was asked not to do – “  I relate to this on a visceral level. 

Frank Sinatra and Ava Gardner – they were the loves of each other’s lives, but a theatrical and disastrous pairing that I am obsessed with completely.  For example, Frank called Ava the night before every one of his subsequent marriages – just to make sure that there was no chance of them reconciling. He sent her flowers on her birthday every year until her death which she would keep in place until the new arrangement arrived the following year. He even had a statue of her at his home in Palm Springs, California – (his final wife finally made him remove it). There were dishes thrown, insults hurled, and a single take recording of “I’m A Fool To Want You” sung by Frank which captures their relationship so perfectly.  Ava – when asked about her marriage to Frank in an interview – quipped, “I miss Frank. Well, I miss fighting with Frank…”. 

I am in deep admiration of a life lived so unapologetically – and I strive to emulate her each day. 

2. What’s something you’re passionate about that most people wouldn’t guess?

I am of Southern Italian descent, and am passionate about learning and practicing the old ways of the Stregas (Italian witches). Their magic came from their mastery of herbs, natural elements, healing practices, and spiritual beliefs. There is a saying that as long as there is a Strega practicing in the world, the moon will still rise. I just love that sentiment and am always seeking new knowledge through reading, research or talking to others with similar interests. 

I think most people would be surprised to know that I am a professional Tarot/Oracle card reader. I hold a professional certificate through training completed with Hay House and am pursuing a program of study through The Tarot School of New York. I have the unique ability to channel messages from those that have departed in addition to my deep instinctual knowing of the energy surrounding situations. I offer card readings both in-person and virtually through my business, Soaring Eagle Oracle. I am fortunate enough to have an established multi-state client base, and am looking forward to offering my services at local psychic fairs in 2025!

3. If you could instantly learn a new language, which one would it be and why?

Of course, I am incapable of following directions and am not answering the question correctly – there are 2 languages that I wish I could learn instantly: Italian and American Sign Language (ASL). 

I desire to be instantly fluent in Italian (beyond the command I have over the naughty words) to allow me to do both genealogical research and continue my exploration of the Southern Italian traditions of healing and magic. A bucket list item is to live in Italy for an extended period of at least a month in the regions where my family came from, and knowing the language would help immensely. I would love to be able to fluently write to my family members in Italy without the use of Google translate, too! 

As my hearing weakens at an unpredictable and sometimes alarming rate, ASL has moved to the top of the list of things I need to pour serious attention into above all other hobbies. Brad and I are slowly plodding our way through lessons, maintaining our sense of humor while confronted with the reality that this is a necessity and not an option (anyone know how to sign “anything”? We can’t figure it out…). I do wish that I could automatically absorb all there is to learn about this complicated language – it is so much more than hand gestures, as I am learning quickly. The stress of knowing that this is something I have to learn impacts my enjoyment of learning at times, but I keep trying to maintain a positive perspective and embrace the process of moving towards at least functionality with ASL. 

4. What’s a topic you could talk about for hours?

In the mood for a never ending, impassioned rant? Tell me how much you love Notre Dame Football. I will counter, firing on all cylinders, about my disdain for the Fighting Irish, the campus, the coaches, Lou Holtz, the gold helmets, and Rudy – peppered with my unwavering love for the Boston College Eagles. Try me. 

5. When you think about what’s next for Hearing Things in 2025, what is one thing you want to work towards to make it a reality? 

I tend to have grandiose visions and Brad has the logical, methodical style that pulls me back to the ground. My ultimate goal is to be on the Today show, amassing legions of fans and being sought after speakers for conferences, university lectures, and serving on advisory boards…but in the realistic meantime, I would like for us to start doing public presentations and speaking at conferences!  That seems like as good a place to start as any!

For fun during this busy month of December – we challenged each other to write an Acrostic poem using each other’s names – this was a fun (and frustrating) assignment…but we think they came out pretty good…have a look – Brad’s name on top, Julie’s name on the bottom –

Brad McKenna – written by: Julie

Books, Bruins, Beer, Boston Terriers, and a gentle Buddhist, bursting with words 

Rainfall brings plastic cases, reminders, gestures, and pleas to protect the sensitive bionic ears 

Arguments with me, is what he likes best, to borrow a turn of his phrase 

Determined to Haiku, the elusive 5 – 7- 5, weaving words together, c’est incroyable 

Maple Leafs, Habs, Canucks and the rest face the wrath of the Big Bad Bs – the Bruins and Brad

Compassionate, true, but curious, too – but not about that damn Cherry Chapstick

Keeps order, he does, of all the things technology

Elephant Gerald is the perfect depiction, the towering companion to the short yet fierce sidekick 

Nope to the beach, sun, sand or surf but resounding ayes for pies! 

Nope to heights, too, however puzzling for someone 6’ 2”, but smiles broadly for a cold pumpkin brew  Aided, but listens more than most people that can hear

Julie Lane – written by: Brad

Jovial as a kid in a candy store,

Unaffected by adversity as a harbor in a storm,

Life of the party. What party? Her party, your party, any party. 

Indefatigable as that battery bunny, 

Excited by life as a dog with free reign in the kitchen. 

Liberal with her generosity as the clear night sky with stars. 

Appropriately and inappropriately funny as a Stephen King clown is scary. 

National talk show host in training, as if anyone else is better suited.

Extroverted enough to get this reticent introvert to co-host a show on the wilds of the internet. 

In what comes as a shock to no one, Brad and I have a difference of opinion. 

This time, it concerns our personal feelings about the graphic novel, El Deafo, by Cece Bell – a loosely based biographical account of her own experiences navigating the world whilst wearing hearing aids. 

Brad has mostly positive feelings about it, though he has revised his initial thoughts a bit since his initial reading of the book some years back. You can read his review here: https://bradmckenna.wordpress.com/2024/12/09/bookreview-el-deafo-revisited/ 

I continue to refuse to even consider reading that book due to the word “Deafo” being one of several cruel insults lobbed in my direction by ignorant children during my elementary school years. I am not easily triggered by much, but the childhood bullying I endured was significant and has carried healed and hidden scars throughout adulthood. I will be sharing my story with all of you when the time feels right – but in the meantime, if you were cruel to someone whose body worked differently than your own I request that you take a reflective moment to explore why you did it – and then take a pause to acknowledge that your decisions may have caused  long-lasting, hidden pain.

The original post is as follows, and my steadfast refusal remains the same: 

I Can’t Read That Book (Original Post) – March 2021 

The graphic novel, “El Deafo”, by Cece Bell is a loosely based biographical account of her own experiences as a Deaf person – published in 2014, this tome took the book world by storm. This book was everywhere – on shelves, on display in libraries, in the arms of children and adults alike. 

And I had to hear about it. Constantly. 

I have spoken about this theme before – that every time someone with a hearing loss does something that a typical, intact person has done before them – it is An Event. A cause for celebration, a rallying and victorious cry in support of The Deaf Person That Did A Thing!  

And I have to hear about it. Constantly. 

This book was no different, and I remain unwavered in my refusal to read this book. There are a myriad of reasons, but in summation I break it down for you here: 

It is a single source, a biographical retelling of one person’s experience with a hearing loss. A single source amidst an embarrassingly limited genre where the Deaf person is just a character in a story – as opposed to the “special friend” that everyone learns a lesson from, usually about resilience, courage, and perseverance. 

It is not the all-encompassing Deaf Book of Secrets that some of you seem to think it is – and have treated it as such. 

Able bodied people have single-handedly turned me off to this book by the following things that have been said to me since the book’s publication. We have discussed at length the power of words and that your intention may be one of passion, interest and kindness – but the impact of your words require careful and deliberate analysis before you share them. 

In no particular order, I was on the receiving end of these comments: 

1. “The author is Deaf – and she REALLY captures the Deaf experience!” 

(Umm..how do you know? Last I checked you could hear without adaptive equipment).

2. “I think you will REALLY identify with this book!” 

(Have you secretly been living my life right along with me for the past 46 years and I’m  just finding out about it?)

3. “Did you see this book? It is SO GREAT for kids to read and learn ALL ABOUT DEAF PEOPLE!”

(Again – alot wrong with this statement, with generalization and reduction of a wide variety of people with diverse experiences into a single source). 

Lastly, I cannot get past the title. The term “Deafo” is to me an incredibly cruel, offensive, degrading, disrespectful and reductive term that was lobbed in my direction for most of Elementary school years by a group of students whose sole entertainment was singling out my “otherness” for their cruel pleasure. There is vast power in that word – and it is telling that some 40 years later, the scars I bear from those experiences still flare when I hear or see that word. Someday, when I am ready, I will explore this further in future blog posts – not today. 

I appreciate your passion for this story and I am glad that you enjoyed it, maybe you learned a little something, and maybe you gained a new perspective.  I ask that you remember well that it is a single source, and not a “catch all” of the experiences that those of us with hearing loss have faced. 

And please don’t tell me about this book again…or that Heather Whitestone was the Deaf Miss America…or Nyle DeMarco was the Deaf Dancer on Dancing with the Stars…or that Linda Bove on Sesame Street was Deaf…or anything else that you come across – I got it. 

My breaths were deep and measured. Each exhale released burdens that were not mine to carry and each accompanied inhale brought forth a renewed life force that was cool and crisp. I allowed myself to surrender completely and was carried along a stream of stars and dust, lazily suspended amongst perfect stillness. This peaceful detachment of my essence of being from my physical body was the epitome of contentment. 

I had finally found the quiet that I desperately sought – pure silence and stillness. 

And I did not want to come back. 

Inevitably, as it always does, I crashed back into my physical form with my energy humming and my palms overheating. My eyes snap open, I’m back in reality, and while I maintain some of the lightness of being, the world comes into harsh focus. 

Such is my daily meditation journey. 

I have always been a “casual meditator” over the years – a calming breath here, and uttered ohm there, but never engaged in a formal practice until mid-2020, in the midst of a global pandemic, when I was gripping to the sharp edges of my sanity, desperate for some grounding force. I began doing a nightly meditation before bed to help bring my anxiety down to a manageable level in the hopes that a few hours of uninterrupted sleep could be within reach before a new day with the old stressors arrived once again. 

I freed myself from any perceived “meditational norms” and focused on breathing and centering myself, but as the years marched forward I decided to try out a meditation app where I would have a soothing voice guide me through the meditation with visualizations. I was curious to see if I would reach a deeper state of relaxation and if my meditation practice would be permanently altered. 

Did I mention I was hearing impaired? 

Undaunted by that small fact (per usual), I dove right into a guided meditation. I settled in my favorite position, closed my eyes, took a few deep calming breaths, hit play…

And got substantially aggravated at the fact that I couldn’t understand “The Voice”.  I was straining to hear each phrase, wondering if I was supposed to be “visualizing a meadow” or “feeling mellow”…was it “walk to the stream” or “talk and scream”? 

What it was, was superbly unproductive, stressful, and fury-inducing. 

So that was the end of that experiment. 

I then decided to try an in-person guided meditation experience. On the surface, this seemed like a much better idea considering that a “live voice” in closer proximity would surely be far more accessible than a canned, electronic narrative. 

I was very eager for this in-person experience, felt positively about it and was energized to try something new right up until the point the group leader put on singing bowl music…and asked us all to close our eyes. 

Remember that little fun fact about my being hearing impaired? 

There is nothing worse than being asked to close your eyes – and then follow orally presented directions. 

Needless to say, nirvana was not achieved. 

I value my meditative practice and continue to twist and tweak little bits here and there during my nightly astral travel sessions – but this is yet another activity for me that is solitary and self-created due to my inability to effectively access the spoken word options that are available to others. 

Namaste…on my own. 

I do not shy away from stating, asking, requesting and demanding what I need to access, understand, participate and partake in this lifetime as an individual with a hearing loss. 

I have a loud speaking voice, and I’m not afraid to use it. 

And self-advocacy is a personal specialty. 

The casual observer will see someone with a bold demeanor, high standards and an air of expectation that the requested accommodations and modifications will be put in place regardless of the opinions or preferences of others involved. 

This same observer will likely be taken aback by the internal dialogue that occurs each and every time a request is uttered. The implementation of the alterations – however necessary they may be – do nothing to squelch the inner emotional weight I carry each time I ask for help. I struggle mightily with a range of emotions including guilt, grief, frustration, anger, bewilderment, resolution, and overwhelm at any given moment. 

The following is a non-exhaustive collection to illustrate the external/internal push and pull that I contend with each and every time I engage in an act of self-advocacy to manage this unpreventable, persistent and degenerative disability: 

Talking with Coworkers: 

• What I need to say: “Can you please repeat that?”

• What I wish I could say: “I know this is annoying to have to say something over again because I didn’t hear you the first time.” 

Talking with Students: 

• What I need to say: “Remember to look at Mrs. Lane and speak a little louder – your words are important and I want to make sure that I can hear you – “ 

• What I wish I could say: “You’re already working so hard at school today, and I feel absolutely awful about asking you to do one more thing – “ 

Talking on the Phone with Parents and Caregivers: 

• What I need to say: “I’m sorry, I didn’t quite catch that – would you please rephrase it?” 

• What I wish I could say: “I promise you that my hearing loss is not impacting your child’s education, but I’m not sure you believe that – “ 

Chatting with Acquaintances: 

• What I need to say: “I am going to move as it is easier for me to hear if you are positioned on my left – that ear is relatively stronger.” 

• What I wish I could say: “I know you don’t know me well, so I am trying to not be too much of a burden so I’ll make the accommodation on my own – “  

Navigating Salespeople: 

• What I need to say: “Please look at me when you speak so I can read your lips – “ 

• What I wish I could say: “Goddamnit, I am so tired of saying this over and over today even though I know I have to and I don’t want to be rude – “ 

Dealing with Customer Service: 

• What I need to say: “Would you mind if we kept our communication text-based using email or text messaging? It would be easier than using the phone – “ 

• What I wish I could say: “Your job is already hard enough, I am sorry that I am adding another layer of inconvenience – I’m not enjoying this interaction anymore than you are“ 

At a Restaurant: 

• What I need to say: “Would you mind switching seats with me? It would be easier if I could have my back up against the wall to absorb the sound – “ 

• What I wish I could say: “I feel terrible about having to make this change in seating – because while it will help my enjoyment of our time here, I probably just made your seating uncomfortable -” 

At the Doctor’s Office: 

• What I need to say: “I’m hearing impaired, use two hearing aids, and will let you know if I need anything repeated. Thank you so much – “ 

• What I wish I could say: “I appreciate you repeating things for me the first time…but why do I have to reiterate my need for a repetition every 3 minutes?” 

To My Friends: 

• What I need to say: “Do you guys mind if we put the captions on? It would be easier for me to understand the movie -” 

• What I wish I could say: “I don’t know if I could be this patient, and I honestly don’t know why you keep me around – being my friend seems like an awful lot of work – “ 

To My Family:

• What I need to say: “Would you help me with….(insert a million things)”

• What I wish I could say: “I’m sorry, I know I’m a burden.”

To loosely borrow phrasing from Vince Lombardi, famed coach of the Green Bay Packers and next in line to Frank Sinatra in Julie’s idolization – “Advocacy is not a sometime thing; it’s an all the time thing.” 

Oh, how I wish it was a sometime thing. 

My whole life, I’ve talked with my hands. I point directly at objects, wave fingers loosely in directions of people, stab the air with gusto when caught up in the midst of a particularly passionate rant. All of this accompanied, of course, by my rapid rate of speech, peppered with distinctive mispronunciations and sheer butchering of spoken English – which, ironically, is not due to my hearing loss but to a wicked Boston accent, its existence which I have repeatedly denied. 

I count myself among the fortunate that I am able to still understand – and be understood – through the use of spoken words. My hearing has been decreasing at unpredictable levels over the years, but while my ears are descending into silence my verbal channel is holding strong – much to everyone’s delight and dismay. However, reality took hold at my most recent audiology appointment, where I was gently, firmly and directly informed, “It’s time.”

It’s time for me – and eventually those around me – to start learning American Sign Language (ASL). I have reached the point of no return on the audiogram chart – there are not many lines left on the page, which foretells that the day is coming where hearing aids will no longer be a benefit, and I will likely need ASL as a “backup” to spoken word. 

I knew this day was coming – but in what is both my greatest strength and weakness – I laughed at it all, blissfully joking it away and figuring I’d just deal with it “someday”, but never really believing that “someday” would arrive.  

And here it is, that dependable Someday. 

My experience with ASL has been limited – I took a class in high school and another in college, and over the years I dabbled here and there with books and video clips as it struck my fancy. I have a basic grasp of the fingerspelling alphabet and can recall and produce a smattering of signs, but my ability to converse and interpret ASL is close to nonexistent.

ASL requires quiet study. 

I am not quiet. 

Luckily, I turned to the quietest person I know for advice – and fortunately/unfortunately, he has a vested interest in learning ASL, too. As always, everyone’s favorite DHH BFF, and technology librarian, Brad, came to the rescue! Of course, he had a plan prepared before I finished my tirade about how I need to learn ASL for real this time – and set us both up on an app named MANGO. 

MANGO consists of multiple learning modules that build upon one another, the teachers are fluent signers, there is a “mirror feature” where you can watch yourself making the signs, and all kinds of other cool things that Brad covers in his blog post this week, so I will skip the technical stuff and send you over to read his post instead.

I was very much onboard with learning ASL in a format that was self-guided and self-paced. I am extraordinarily busy and it would have been impossible to add another item to an already packed calendar. I knew that I needed to commit to this practice and take it seriously, so I made it a personal goal to work through each module, schedule practice times with Brad, and place high value on the opportunity we had to work together to acquire, internalize and use this language. I also knew that I wanted to get a strong enough handle on ASL so when I ask my family and friends to begin their studies, I could then support their learning and be an effective practice partner. 

(And let’s be honest – it would be a lot for anyone to have loud, hand gesturing Italians all trying to learn a silent, gesture-based language at the same time. We’re doing this in stages for a reason!) 

Brad set everything up (patiently) on my phone, complete with directions of how to use the app, navigate around the settings, etc. The next day I (impatiently) went into the app, saw that I was logged into Brad’s account, and decided that the technological wizard didn’t know what he was doing and logged myself out, determined to have my own account. 

(I think we all know who was wrong here (me) and that there was a reason why someone (Brad) set up a shared account…I have now learned to not touch anything pertinent or mysterious on any of the technology we share…) 

As usual, Brad cleaned up the mess I made of things (again) and I was poised to begin Module 1, Lesson 1! I was thrilled at how quickly I picked up the signs from the first lesson – and did remind myself on more than one occasion that it was because I had a working familiarity with most of the signs in this lesson based on past courses – but, undeterred, I continued on with the practicing feeling like I was well on my way to be a fluent ASL speaker. 

I buzzed through Module 1 in less than a week, and decided to get a jump on Module 2! I popped open the first lesson for Module 2 and became instantly confused, overwhelmed and more than a little aggravated – because we’ve somehow made the leap from “Hello, my name is…” to “The garbage is in the garage” and “Stop by and see my new kitchen”. 

As usual, I decided that I obviously knew better than this app and began ranting that this is not a logical order and the app is trash and this is ridiculous…of course, Brad – once again – has to clean up the mess I made… when he softly pointed out that each Module has multiple lessons nested within them. 

I had somehow made the leap from Basic Introductions to This Old House.

I backtracked. I started Module 1, Lesson 2. 

Let’s see how this goes…

We will be back to update all of you in future blog posts of our learning styles, how we are practicing together, if I am able to take this seriously, and if Brad is still speaking to me in any language! 

It happened again…my witnessing of isolated American Sign Language (ASL) signs emblazoned on “teacher shirts” – spelling out catchy phrases such as “Third Grade Rocks!” using the visual images of hands forming the letters of the alphabet. The prevalence of seeing the sign for “I love you” on tote bags, key rings, coffee mugs, dishtowels, sweatshirts and baby onesies also raises bile from the back of my throat. And when signs start appearing on magnets – for some reason – this irritates me most of all.

American Sign Language is a language – and it possesses its own grammatical system. The employment of finger spelling is a very small part of ASL – typically used when something needs to be spelled out because there is not a specific sign (i.e. first names, business establishments, etc.). Additionally, ASL incorporates the necessary accompanying facial movements, expressions, and torso positioning to convey complete meaning.

American Sign Language is not a rudimentary and disorganized hand signal system. ASL is not a series of pantomime hand gestures employed by the Deaf and hearing impaired in a desperate attempt to demonstrate individual wants and needs in the absence of verbal speech.

The origins of ASL began with Dr. Thomas Hopkins Gallaudet in 1814 when his interest in education of the Deaf was sparked by interaction with his neighbor’s Deaf daughter. Dr. Gallaudet is credited widely with his import of early sign language to the United States following his extensive studies in Europe of sign systems and Deaf education already in practice. The founding of the American School for the Deaf in Hartford, Connecticut in 1817 laid the foundation for the evolution of Deaf education in the United States. ASL was finally recognized as an official language in 1965 through the research and advocacy of an English teacher named William Stokoe. In 2013, American Sign Language was officially recognized as both a community language and a language of instruction in schools. 

A review of the presented timeline regarding the evolution and acceptance of ASL in this country as a valid language is very telling when I consider people’s continued perceptions and dismissal of Deaf and hard of hearing people. The establishment of Deaf education in the United States began in 1817, yet it took another 148 years for ASL to be recognized as a true language in 1965.  The victory of 1965 was a milestone for Deaf and hard of hearing people with the recognition of their language by the mainstream, but it was another 48 years forward in history for ASL to be recognized officially as a true community language and the language of instruction for Deaf and hard of hearing students. 

American Sign Language has been officially recognized – but is not receiving the respect that it warrants – especially in the educational setting of primarily hearing students and teachers. There is a disrespectful practice of cultural appropriation that has been in continued practice for the majority of my expansive 25+ year teaching career. 

It is not uncommon in many typical classrooms that teachers and students have adapted isolated ASL signs as a tool for communication of specific needs on the part of students.  For example, many classrooms employ the sign for bathroom for students to use in the middle of active instruction as a way to convey that they need to use the bathroom. The teacher is then able to acknowledge this communication and allow the student to leave the classroom without having to pause the flow of a lesson. A second example is the use of the ASL sign for water which students will use during active communication to convey that they need a drink of water. ASL does not exist to support and enhance classroom management practice.

One can argue that the use of such signs is a respectful way to introduce hearing students to small components of a language used by a rich, diverse culture.  The argument falls flat when these signs are labeled as “non verbal signals” and used for the sole purpose that it limits student interruption to active lessons. When educators “cherry pick” out of the ASL language and use such signs as “non verbal signals” – the very description of “signals” alone sends a message that ASL is not a valid language. It reinforces stereotypes that ASL is a “trend” and a “cool thing to know how to do” – and it single handedly diminishes that it is a recognized language and deserves to be treated with reverence and respect by the intact, non-disabled community. This “borrowing” of hand signs is a direct dismissal of the Deaf and hard of hearing communities, and by extension sends a clear message to those of us with hearing loss that while we have achieved significant victories over very long periods of time, we are still seen as “less than” by those that are intact. 

As a society, we continue to increase our awareness of cultural appropriation and disrespect towards cultures as most recently evidenced by the elimination and eradication of symbols and team mascots that demean and demote indigenous cultures. 

There have been many moments in our recent history where we are collectively witnessing a forward movement towards changing perceptions and stereotypes – but the inclusion of the Deaf and hard of hearing community is once again missing from the narrative. This is hardly surprising considering our acceptance of victories that arrived over a span of 200 years – victories, yes, but really offered crumbs from those that perceive themselves as “greater than”.

We need to do better. We need to stop perpetuating misuse of American Sign Language in our classrooms and on merchandise. We need to stop using Helen Keller as the main example of a successful Deaf person and dive deeper into learning about and understanding the Deaf community and the contributions of its members.