As you can tell by our facial expressions at the start of this adventure, there are two sides to every story…

We each wrote our sides of the story – my take is below and Brad’s take on this entire mess is linked below! Be sure to check out both of our stories about this latest shared experience (it’s all my fault…) –

Julie’s Take

As I drove up the highway and then onto scenic, winding side roads, I prayed for rain. I wished for rain. I pleaded for rain. And not just your basic, everyday rain – I wanted torrential downpours, sloppy puddles, and mud so deep and sticky that your sneakers risked being left behind with each step. I needed that level of rain with a desperation that was unmatched – for today was THE DAY that we were going to do A Very Scary Thing. 

I contrived The Very Scary Thing and rebranded it as a Potentially Scary But Exhilarating Thing – and somehow sold this idea to the only other person equipped to experience and understand the depth of this alongside me, my collaborator and friend, Brad. As with most of my ideas, I am ready to charge ahead and think about the logistics later, as I am a self-proclaimed devotee to the motto, “Damn the consequences! Full speed ahead!”. Luckily, when Brad is on the receiving end of the madness, cooler heads tend to prevail – but this time, somehow, I managed to convince him to undertake this side quest with me with promises of treasure (beer) and loot (fries) waiting at the end. 

We pulled into the parking lot of a state park that has unpaved trails that wind up and above the majestic rocky coastline of the Maine shore – the quintessential ocean view that holds magic and secrets of shipwrecks and adventure and captures the imagination of even the most hardened visitor. The views are breathtaking regardless of the weather – and while most would prefer to visit on a sunlit day, I was hellbent on experiencing it during a rainstorm. 

Without a raincoat. 

No umbrella in hand. 

In the absence of sensible shoes. 

And without my hearing aids in. 

(And by default, because he was getting dragged along into this heady mess – Brad was also going to remove his hearing aids – but his side of the story is his to tell, and you can read about it below…) 

As the leader of this ill-conceived and likely irresponsible expedition, I pushed down my anxieties and fears and led with confidence and an easy smile. I didn’t dare let on that the second my foot hit pavement after leaving my “ears” in the dry warmth of the car I was filled with an inexplicable terror and almost lost my nerve completely (while simultaneously appealing to any spirit that would listen that the car please not be broken into or stolen in our absence because our hearing aids were in there). However, having been raised in a “football family”, I drew from the words of famed coach Vince Lombardi, “Winners never quit, and quitters never win!” – then bravely took those first few steps into the misting rain. Intellectually, I was very aware that my hearing aids were out but I still defaulted to checking myself to make sure that they did not get wet – old habits, it seems.  

Brad was on my right side as we started walking, and considering one of his 6’ 2” strides are equivalent to 4 of my 5’ 4” steps I was praying that he would match my pace and not stray too far ahead because at this point neither one of us were capable of hearing the other one or pretty much anything else. This brought up some questions in my mind about the sanity of this undertaking, safety considerations that I really hadn’t considered, and set me into a state of hyper awareness that I have never experienced before or since. I also quickly realized – as the talker of the group – that my incessant and nonstop chatter and ongoing commentary had come to a screeching halt because we had both been plunged into sudden silence. (In retrospect, for Brad this was the best gift he’s ever been given considering I am a running stream of consciousness – I lasted 2 exits worth of not talking on the drive up). 

We carried on, hitting the unpaved trail, and I started to lean into the experience a bit more and released some of the anxiety that we were going to suddenly be attacked by hoodlums springing from the brush, and instead shifted my focus to observing what was around me during this rare quiet moment in an otherwise ordinary day. There was an emerging exhilaration in my realization that I was finally able to be out on a rainy day with no care of my hearing aids getting wet – and with that realization my trepidation turned to excitement and I was able to convince myself that this was the best idea I have ever, ever had. Ever. 

As we continued on our stroll, my eyes took over for me more than ever, and I found my attention drawn to plants, sticks, and rocks that I have passed countless times over the years on these familiar trails during my charge forward to reach my favorite outlook spot over the ocean. I was truly shocked at how much my singular focus of only experiencing the ocean each time I visited this park clouded the natural life around me – it was truly as though I had stepped into a completely different setting than one that I had frequented in the past years. The colors of the flowers seemed brighter, leaves were shinier and the muted colors of the rocks sprang to life in an unexpected contrast. 

We reached the bench where I typically pause and it was here that I looked out on the ocean fully and the realization hit me that I was in a world of impermeable stillness and silence – as there were no noises that I could hear, not anymore. For years, without my hearing aids in, I was able to pick up on ambient noises including my dog barking or a door closing – but in the past few years those sounds had been slipping further out of reach as my hearing has declined substantially. I had mostly accepted this as a part of my hearing loss, but it wasn’t until I was gazing out at the mighty Atlantic when I realized that I could not hear the ocean, at all. 

For those that know me well, my heart belongs to the sea – and the sound of the waves crashing is my soul song. There was a profound moment of disconnect where my eyes could see the ocean but my ears were seeking that soothing heartbeat I craved as the waves crashed on the rocks – and then there was a silent breaking of my heart when I realized that I could no longer hear it. I was on the verge of tears as grief swept over me as I fully acknowledged that at some point either in the near or distant future, due to the type of hearing loss I have been gifted, the world will likely become very quiet. I steadied my breathing and focused my energies on returning to observing the natural world around me in an effort to avoid dissolving into a full on dramatic meltdown that only I am capable of executing with a flair that is unmatched by even the most accomplished actress – with the exception of Ava Gardner, of course. 

As we continued to sit and observe the ocean, each having our own individual experiences during this shared undertaking, there was a mutual, nonverbal understanding when it was time to rise and return to the parking lot, the car, and the safety of once again inserting our hearing aids and rejoining the chaotic, complicated world that wears both of us out on a daily basis through the level of exertion it takes for us to participate as fully as possible. 

Once we were settled in the car with our respective aids, notebooks, pens, and snacks my world felt like it had righted itself once again on its axis. I quickly scribbled out notes, observations, and revelations carefully avoiding revisiting any deep emotions lest I started wailing into my protein shake and popcorners snacks. Instead, I took a deep breath and exhaled gratitude for the technology that I have been blessed to access on a daily basis that allows me to hear the ocean for at least one more day. 

Author’s Note: 

A very special thank you to Brad for even considering this idea, never mind being willing to step into the void with me sans hearing aids, being open to documenting his own experience in a companion blog post, and his exercised restraint in not nudging me off the high rock ledge where we took the above picture capturing our individual feelings about this latest adventure – 

For Brad’s Side of the Story – Be sure to check out:

https://bradmckenna.wordpress.com/2024/08/19/misty-mountain-hop/

Julie’s Side of the Story

I have been blessed with the personality and energy level of a Boston Terrier puppy – overly enthusiastic, goofy, charming, the just right amount of mischief and ability to “cute my way” out of pretty much anything with a disarming smile. This has won me many friends and has afforded me to have many zany adventures and a catalog of entertaining and often mildly inappropriate stories to draw upon at cocktail parties as I’ve moved through this life over the past 50 (gasp!) years. Ironically, though I am surrounded by so many, there are countless times when during the in-between moments I have felt quite alone and adrift. It likely surprises many that the loudest person in the room is the quietest when the world becomes silent each night when I remove my hearing aids.  

As my hearing has continued its eventual decline, it is during the late hours when the reality sets in that I am descending at an undetermined rate into complete silence in a loud and chaotic world. And that is a lonely and scary place to be especially when you are The Other in the family structure and friend group – the only one with a hearing loss, completely adrift in the sea of the greater world that is decidedly not designed with my needs in mind. I have an incredible support system in my closest friends and family members who serve as my lifeboats, life jackets and life preservers as I float along on the sea of life – but what I really needed, without realizing it, was a co-captain for the SS Can’t Hear Anything sailing vessel to help with navigation, avoiding the icebergs, and bailing water out of the hatch.

I shall begin the background of our origin story borrowing from the incomparable Estelle Getty in her perfected turn as Sofia Petrillo on the “Golden Girls” – “Picture it, Bedford, 2000-something”…when I had the absolute privilege of making the acquaintance of one Venus – a connection that blossomed into a friendship and support system that few are fortunate to have in their lives. Over the years, I fell into an easy friendship with her partner, Tom. I was peripherally aware that Tom had a brother with a hearing loss but our paths never crossed. 

Then, “Trying Things With Tom” hit the internet – Tom’s masterful video clip series where he tries different foods and cracks me up on a weekly basis. Simultaneously, Venus casually mentioned Tom’s brother, Brad, to me and suggested that we connect due to both being hearing aid wearers. As with most things in an Italian’s life, food and laughter are at the heart of the best moments – so one day, after introductions were made over text – I messaged Brad off the cuff in my typical impulsive and humorous way spurned by my incessant desire to share anything that pops into my brain. The message said: “We should do a podcast. If Tom can eat food we can come up with something!”  I was met with no response.  Undeterred, I waited exactly 11 hours before I sent the next message, which said “I’m doubling down on the podcast after the New Year…”Hearing Things with Brad and Julie” – Tom can do a cameo appearance and we can listen to him chew.” It was a joke with a fringe possibility of maybe it developing from a nothing to a something. I never thought it would go anywhere and that it would go the way of some of my other wild ideas that I throw out in moments of impulsive inspiration to see what sticks. Truthfully, as the months flew by, I forgot about the entire exchange (and Brad..sorry, buddy). 

Venus circled back to the idea in the Spring of 2024 and mentioned us doing something together centered around our hearing loss. From the far reaches of my memory, I pulled forward the thought again and we connected in May 2024 once again through text, made our first in-person acquaintance at a party, and then once again life got in the way and this was shoved again away in the messy file drawers of my splendidly cluttered gray matter. 

It started with a shrug. I now term it “The Shrug of Understanding”. A nonverbal communication that carried with it an instant connection. We were in my living room continuing the celebration in a smaller group of friends following a very loud, animated, and energetic July 4th celebration complete with a live band, delicious food and even better company. (The exact type of event that energizes me to the hilt – and, as I would eventually learn, puts Brad over the edge of reason – but we’ll get there…).  We ended up seated next to each other while we were both independently trying to follow multiple conversations. In what can only have been the hand of fate – we turned to one another and at the same moment, just shrugged and threw our hands up in the air and instantly felt that immediate recognition of a fellow traveler. A silent “Oh! There you are!” followed by relief and a feeling of having found The Other One That Gets It. From that moment, a show was born – as was the surprising partnership of an extroverted teacher and an introverted librarian.  

That instant set off a pile of firecrackers that have been going off ever since that has led to an incredible undertaking developing a video clip series punctuated with planning, talking, texting, listening, plotting, creating, and learning about one another as we slowly unfurl our personalities, preferences, and quirks. We cautiously approached our first recordings with a mix of fear and sheer nerve. I have the showmanship of a circus ring leader and rely on Brad’s thoughtful reflections and background knowledge that rivals an encyclopedia to keep things informative, coherent, and on-topic. My brain flies around at breakneck speed and I live in a world of fast paced communication in words and ideas. Brad is the technological wizard and detail manager of the operation. The easy rapport in our presentation is evident from the first minute of our first video – and no one was more surprised than us that we truly pulled it off. 

On the surface, at first glance, we are an unexpected pairing with Brad standing at the height of an oak tree when positioned next to me who can barely see above the steering wheel even with the seat at full height. He burns easily and despises the beach and heat, while I am in a sweatshirt when it is 70 degrees and seek the ocean like a newly hatched sea turtle. I am gregarious, loud and have a presence while Brad is introspective, reserved, and an observer. I can’t wait to go out and see what the world has in store for us, while Brad’s singular goal is to go back home to his beer and his books. 

It really shouldn’t work. But it does. Venus described us as the yin and yang, and there really is no better description. And for that, I am forever grateful to have found the Bert to my Ernie* (scroll down for the meme that captures it all) – a connection rooted in our differences and found similarities. 

I cannot wait to see what is ahead for “Hearing Things with Julie and Brad” – and the many adventures, mishaps, and ridiculousness we find along the way (with forced moments of silence from me by a virtual kick under the table to “settle down” from Brad). 

If you would like to follow along with us – and you should, honestly, it’s nothing if not entertaining – join our Facebook Group: https://www.facebook.com/groups/484001504321168

You can also subscribe on YouTube directly at: https://www.youtube.com/@hearingthingswithjulieandbrad

If you prefer, we also have a weekly email distribution list that will automatically send you the YouTube link each Friday when our new episodes drop – send us an email at: jlanebceagles96@gmail.com and you will be added to the list! 

And because Brad has taken a liking to Haiku (while I despise poetry) – in the spirit of teamwork I offer this to you, his words: 

Hearing things with us
is never completely right
eggcorns then abound!

(And our Muppet equivalents..) 

Brad’s Side of the Story

For years, oh about 43 to be precise, I’ve felt that I don’t have to find my people. I’m a straight white cis-dude. The world is made for people like me. 

I heard a critique of Critical Race Theory a while back. If there’s a history seen through the lens of BIPOC there should be a history seen through the lens of white people. 

There is.

It’s called history. 

So, why oh why, does a society made for me exhaust me? Because it’s not made for me. Not really. It’s made for extroverts. I’m an introvert. But more to the point of this post, it’s made for people with baseline hearing. I have hearing loss. 

Last December my life entered what’s called the Trough of Disillusionment in tech circles. Both my work and personal lives were in free fall. And I couldn’t see where I’d land, which is particularly uncomfortable for a dude afraid of heights! But my Karma was kind and the ride down to the Trough was a fast one. I was able to use that speed to whiz passed my shattered self-confidence and reach out to the HLAA. I’ve been writing about the incredible gains I’ve made thanks to that. 

Now I want to talk about another incroyable gain I’ve made. 

Methinks it was in December that a friend put me in touch with a friend of hers. Venus thought Julie and I would be great friends through the bond of hearing loss. I’ll be a monkey’s uncle if she weren’t spot on! While the catalyst for the friendship was indeed our shared hearing loss, it’s become much more than that. But I’m not here to imitate an afterschool special on the benefits of friendship. 

I’m here to talk about Hearing Things. 

Hearing Things with Julie and Brad. 

Once she got to know me, she got inspiration from my brother’s show Trying Things with Tom. She suggested we collaborate and create our own show where we talk about our hearing loss. I said yes, because I always say yes when someone asks for help. Even though I have major qualms about appearing on screen. Remember how I said my self-confidence had been shattered in December? Well it’s always been about as solid as the candy glass used in movies. I’m always so embarrassed when I see myself on screen. Hell, I did a podcast with Wilmington’s Cable Access channel for years. It was called Bridging the Digital Divide; which is what the chasm between the technology haves and the technology have-nots is called. We won an award and a small loyal group of listeners loved it. But I don’t know. I’ve never listened to a full episode. I was too self-conscious. 

So, a video series? I dunno…

As The Fates would have it, Julie is a teacher and that kept her busy for months. She’d occasionally make a comment but I thought her idea would remain just that, and idea. Truthfully, being in that trough distracted me from worrying overmuch. But then came the 4th of July. 

Julie invited me to her annual party. It was a sweltering good time. Both because it was roughly the temperature of the inside of a bonfire and because a hard of hearing introvert gets stressed out by raucous parties. That’s not to say I don’t have a good time. It’s just a lot for your intrepid narrator. But then something happened that’s never happened before. 

I had a partner in crime. 

As the sun began to set and the part began to wind down, we migrated indoors. Where there’s more light. Which aids the whole reading lips thing. And once in the living room, the conversations would occasionally splinter. And my head made like a ping-pong ball missing each paddle. Cross-talk is one of the (many) banes of a person with hearing loss. (Of Deaf gain. But that’s a huge topic, one that I have already blogged about because I read a book. Shocker. I know.) Normally I’m left to fight that diabolical doo-doo head alone. 

Not this time.

I popped on over to Julie’s chair and we gave each other a look and a shrug. And in that moment, boys and girls and people of all genders, a show was born. 

We began texting on the regular and a couple of weeks later, we met over zoom and recorded our first three shows. Julie put on her teacher’s hat (that is if she ever doffs it) and came up with topics galore and lesson plans. I put on my tech librarian hat (I most assuredly never doff that one!) and re-learned OBS, a free recording software I used during the pandemic. I also remembered that Microsoft has a free video editing tool, clipchamp. She’s got the charisma and easy style that is paramount to a good show host. I’ve got the deeper explanations that is the hallmark of an introvert talking about a passion. We’ve got a good thing going. 

What do you get when you put an extroverted hard of hearing teacher and an introverted hard of hearing librarian together? You get two people who just want to help other people. You get Hearing Things with Julie and Brad. 

You can join our Facebook Group: https://www.facebook.com/groups/484001504321168

Or if Facebook is not your bag, you can…what do the yoots say…oh yes, “smash the subscribe button” over on YouTube: https://www.youtube.com/@hearingthingswithjulieandbrad

And because, I’ve taken a liking to Haiku:

Hearing things with us

is never completely right,

eggcorns then abound!

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?)

“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. 

How many times have we uttered this phrase to children – “You can be anything you want to be when you grow up!” – and then fill their imaginations with lavish wonders and “shoot for the moon” dreams. 

Time for a reality check. 

It’s a harsh reality to face as you move through childhood and beyond that the promises made to you by well-meaning adults set on inspiring the next generation are – in fact – false truths and unattainable, unrealistic goals. 

Let me break it down for you – as someone with a life-long, degenerative hearing loss: 

Private First Class DeMatteo: 

At one time, in the distant past, I toyed around with the idea of maybe entering the Army when I was of age – this is comical because I hate exercise, outdoor active pursuits, and being filthy – but I digress. There is a good reason why I would not be accepted into the military services – do you really want me leading you over enemy lines with a hearing loss and a stage whisper? 

This is Your Pilot Speaking: 

I love to travel, I enjoy talking with anyone and everyone about any topic, and have just enough of an attention span to keep my eyes on the friendly skies! Oh wait…headphones, those would pose a problem. Those round plastic nightmares plaster my hearing aids to the side of my head and cause intense, high screeching feedback. I also rely on lip reading – would be impossible to lip read the people in the radio tower – and they seem to be pretty important people that I would need to understand immediately. I doubt they would be willing to repeat and rephrase those urgent announcements several times in succession. Sorry, Jet Blue, you just lost your best prospective employee. 

Dr. Julie: 

“Paging Dr. DeMatteo-Lane to OR 2” – or was it, “Paging Dr. DeMatteo-Lane, Code Blue” – intercom announcements and I typically do not get along. I could have been a doctor – and a good one at that – I work hard, love to study, and have decent enough fine motor skills – but the whole “everyone in a mask” situation presents issues. “Attention – all in the operating room – if you could pull your masks down away from your face so I can lip read you that would be terrific!” I guess the only operating room I will ever be in is in my imagination at Seattle Grace with McDreamy (and we all know how that ended). 

Sign Interpreter for the Deaf: 

Oh, ok – because I’m the reliable source? No comment. 

It is time to become comfortable with the uncomfortable – and take a realistic approach when you talk with children and encourage them towards their passions and fantastical dreams. Help children recognize and appreciate their abilities – regardless of their disabilities – while motivating them to capitalize on their strengths and talents to reach achievable goals all the while acknowledging that the world is not designed with their needs in mind. The best gift you can give your child is honesty, transparency and encouragement – not false hope. 

It is time to stop lying to children – and yourself. 

I have been beyond blessed with a loving and supportive family that always took my disability in stride and made every effort imaginable to be sure that I was included in everything that my siblings or cousins were involved in with accommodations as needed.  I come from an incredibly generous family and we were among the fortunate to have had all that we needed in our lives. I write this blog today in appreciation for my parents, grandparents, aunts, uncles, cousins and friends that we consider our family. Thank you for your love and affections and for always helping me rise to greater heights than I ever could have imagined – I love you all.

However.

As we enter the holiday season of gift giving, that landmine of selecting the perfect gift, I am confident that at some point – whether they would admit it or not – my loving parents, adoring grandparents and well meaning relatives stood in the middle of a Toys-R-Us in the late 1970s and thought, “What do we get the Deaf kid?” 

Look. You all tried your damndest to get it right – and most of the time you did – but there were some serious stumbles along the way and I was just too damn polite to point it out to you at the time. We’re now in the midst of a stay at home order and I’ve got things to say – I can’t see any of you in person anyway so really what are you going to do to me? (insert evil laughter) 

In the spirit of ridiculousness, love and laughter I have assembled the top five “Greatest Hits” list for all of you to enjoy.

1. Walkie Talkies

Look, I get the intention…with all of the cousins running around together like a small gang you probably thought it was a great idea to have a few sets of these so we could “communicate” while playing hide-and-seek or something while scattered through a two story house. I was great at giving commands through them – not so hot at responding to whatever was said back on the other end. My cousin trying to tell me to “Come up the stairs” sounded to me like “Cmptstrs”.  

2. Headphones

Oh…and not just any kind of headphones…in the long years before Air Pods, the latest innovation were these small black spongy circles with a metal headband that inevitably cut into your scalp. This magical creation replaced the large, clunky headsets of yore – this modern invention streamlined the musical listening experience with these steel wool inspired speakers that fit directly over the openings of your ears. Apparently the memo was missed about how my hearing aids filled up literally every available ear space.

3. CHIPS Patrol Helmet with Attached Microphone

Once again, someone thought it would be awesome for the cousins to have a sophisticated communication system seeing that we were separated by a flight of stairs in a two story house.  The joy that accompanied this plastic, tight fitting helmet crushing down over my already unruly hair and subsequently plastering my hearing aids to the sides of my head was short lived.

4. “Read My Lips” Board Game

No one would play with me. I won every time. Come on, people – think this one through – I had a board game that literally no one would even consider approaching if I was involved. I read lips to survive. 

And….drumroll, please….The Ultimate Toy Fail…

5. Speak and Spell 

For the uninitiated, this thing was the height of sophisticated learning technology back in the early 1980s. It was large, orange, had many buttons to press and it even came with a carrying handle! For me, this machine was the work of the devil. The premise was that this programmed voice would speak to you and you would then type in the word that you were being asked to spell.  This…early technology…garbled…flat tone…mechanical voice.  Let me put it to you this way – it is amazing that I can spell. 

And there you have it – they tried…oh did they try. 

Love to you all as we enter this Holiday season – wishing you love, peace, and continued health. Thank you again for reading! 

There are a great many of you trotting around expounding the following catchy slogans: “Teach Tolerance”…”Celebrate Differences”…”Acceptance, Not Awareness”…and “Be Kind”.  Some of you are humbly bragging about your superior worldliness on enamel pins snazzily tucked on your “old but new again” denim jackets. Some of you are covering the bumper stickers of your environmentally friendly cars with such colorful slogans. Some of you are attending rallies and marches and protests promoting inclusivity.

However…

Most of you still do not know how to react when someone with a disability is standing right in front of you as evidenced by your blatant discomfort. Your insistence for kindness, acceptance, celebration and tolerance fails you when you’re in a real situation where all of your good works should be put into practice.

It happened (again) with a group of people that did not know me (again) but one would assume that because they are in a “helping profession” that they would know better, but ‘twas not the case (again).  I recently worked on a committee with people that I had not previously met and disclosed that I had a hearing loss – and was met with 14 sets of eyes staring at me through Zoom and complete silence. The silence was deafening.  (Even I could have heard a pin drop). I stared back…and waited…but what I really wanted to say was, “Am I making you uncomfortable?” 

I have been on the receiving end of comments such as,  “Ugh! This is so frustrating that you can’t hear me when your back is turned!” oft spoken with a bit of an irritated tone. I remember pausing for a moment and staying silent…but what I really wanted to say was, “Am I a nuisance to you?”

I have had to ask people to repeat and rephrase something that they were trying to tell me after repeated repetitions. It is easier for me to understand something a second time if you rephrase it and use different words because it is likely that the phonetic speech patterns may be easier for me to distinguish when compared to your first utterances. I am met with a frequently employed expression by the hearing to the non-hearing, “It’s nothing, forget it.”  Once again, I felt anger rising inside because to me it IS something – and I get to choose if it is “Nothing” or not….but what I really wanted to say was, “Am I an inconvenience?” 

And – my personal favorite – when I have asked for an accommodation and have been told by a typical hearing person, “Oh – you’re just playing the Deaf card again”. That is incredibly rude, ignorant and dismissive…but what I really wanted to say was, “Are you shaming me for having a disability that is not conveniently in line with your current narrative?” 

I now leave you to let you return to your yard signs, shiny pins, colored flyers, organic teas and hemp footwear. You can rest and retreat feeling that you are the most tolerant, open and free loving person on the planet. I will let you have that peace – for now – but I challenge you to check yourself the next time you meet and interact with someone with a disability – whether they are familiar to you or not. 

And remember this – your actions speak louder than your words – I may not hear everything, but I am always listening.

Things People Say…

If ever you see me looking up at you under heavily lidded eyes with my hand cradled against the left side of my temple, please know that you have earned The Look – which those of you that know me well can almost certainly picture from my above description. You are likely in receipt of The Look because you have said something with the best of intention but completely devoid of any and all common sense – when it comes to my hearing loss. 

I have compiled a few of my absolute favorite summoners of The Look: 

Mom Found The Clear Masks

(Sorry, Mom, but this one is at the top of the list during this wild and crazy time of COVID.)

My Mom was innocently scrolling Facebook at some inane hour of the morning desperate to fill the time between dusk and dawn during one of her recent sleepless nights.  She stumbled upon one of the first news articles describing the creation of “clear masks for the Deaf and Hard of Hearing”.  For those that are unfamiliar with this ingenious design, the panel that covers the mouth on a standard cloth or surgical mask are instead replaced with a clear panel which allows the Deaf and Hard of Hearing to be able to lip read and view facial expressions to support our understanding of spoken words – a complication that we are all now up against with full coverage masks. Through the long night, my Mom retains this new factoid and is bubbling over to share this with me once the sun has risen to an acceptable height in the sky of a new day. 

The conversation is below: 

Mom: “JULIE! You’ll never GUESS what I saw on FACEBOOK!”

Me: (bracing myself for another video of a dog that talks) “What? What did you find this time?”

Mom: “CLEAR MAKS! I found CLEAR MASKS for the Deaf and Hard of Hearing!”

Me: (interest piqued, relieved that it’s not a talking dog) “No way! Tell me about them – “

Mom: (describes the masks in great detail, enthusiasm is evident) 

Me: “That is really a wonderful invention – wish I’d thought of it – but I wonder about the efficiency in protection -”

(I have now been caught off completely by my Mom as she is now bursting like a shaken bottle of champagne)

Mom: “YOU NEED ONE OF THESE!”

Me: “No, I really don’t….”

Mom: “YES! YOU NEED ONE! IT WILL HELP YOU!”

Me: “Mom…I don’t think you’re understanding this…”

Mom: “YOU NEED ONE – THEY’RE FOR THE DEAF AND HARD OF HEARING! IF YOU WEAR ONE IT WILL HELP YOU HEAR EVERYONE!”

Me: (Silence, measured breaths) “Mom…yes, I know they are for the Deaf and Hard of Hearing…but I’m not trying to read my own lips…My wearing one on MY face isn’t going to help…”

Mom: (long pause, like really long)  “OHHHHhhhh…”

The Sound Machine

I mentioned to a friend many years ago that I was having trouble quieting my brain at night and that even with reading before bed, I was having trouble slowing my racing thoughts.  I was met with this suggestion: “Have you thought about getting a sound machine? They are really soothing.”

For those that are not aware – my hearing aids come out of my ears at night. I do not sleep with them in. I cannot hear a thing with them out.

This was not a good suggestion.

Did You Hear That?

He is rarely mentioned, but it is time to bring Mark, my husband, into the limelight for this part of the post.  As we have aged, many things have slowly adjusted but one thing has remained constant – I still can’t hear. This fact, however, seems to continue to elude this saint of a man – because his favorite expression, usually uttered with urgency reserved for the ending of the world, “Did you HEAR that!?” – followed by a mad dash to locate the source of the offending sound. 

Nope. Didn’t hear it, Mark…not this time, not the last time, and certainly not the next time. 

Have You Thought About Being An Interpreter? 

And here we round out this list with one of my all-time favorite comments by a well intentioned coworker – who was gushing over my advocacy abilities for our most vulnerable students, and suggesting that I do more in the public arena for disability advocacy.  This poor soul suggested that I become an American Sign Language Interpreter for the Deaf.

Let that sink in.

I will be sure to continue to update this list as we all continue on this journey of understanding together – because I am confident that The Look will make an appearance again in the very near future – 

Another Day. 

The sweet anticipation of That Moment begins to rise within me about 30 minutes before I approach my official bedtime. All day long, I await with patience and grace for That Moment of pure, unadulterated bliss – when I get to take my hearing aids out, and turn off the world. The sensation of cool air rushing onto my skin and folds of my ear when I pop out those heavy, clunky plastic molds that have been suctioned in my ears tightly all day long. The click of the battery door as it swings open and pushes the aids to power off and rest, and the removal of the heaviest hook that is draped above the top of my ears provides a relief so immense it is often momentarily breathtaking. I feel my shoulders drop, my head falls forward, and for the first time in 16 hours I feel a sense of freedom and normalcy.

I feel a little jolt of victory within me – a celebration of the fact that I made it through another day as a hearing aid wearer. 

Another day survived in a world not designed with me in mind, when I have had to live as a “less than” in the eyes of many that do not understand physical disabilities. 

Another day gone where I have loyally played along with conversations that I may not have completely understood, but adjusted my facial expressions appropriately to feel like I am “part of the group”.  

Another day where I had to gear up to ask for an accommodation and be accused of “playing the Deaf card” – even jokingly – by those familiar to me in both my personal and professional lives. 

Another day of asking someone to repeat something to me, and being told “It’s nothing, forget it” – but to me, it IS something, and let me decide if it is worthwhile or should be forgotten. 

Another day of listening to songs without lyrics and singing along loudly – inserting my own best guesses at words that may or may not be correct.

Another day of constant jockeying my body around to make sure that I can have a clear sight line to the person that is speaking so I can read their lips, facial expressions, and body language.

Another day where I am making a self-deprecating joke to cover my embarrassment at a social gaffe or not hearing someone call my name down the hallway. 

Another day where I’ve had to be on the receiving end of a stranger jostling and glaring at me in aisle 6 at Stop and Shop because apparently they were asking me to step out of the way so they could get by – but I continued to examine the oatmeal because I didn’t hear them. 

Another day of someone seeing my hearing aids and flocking to me like a moth to a light source to tell me about their mother’s-cousin’s-neighbor that is also Deaf, and do I know them?

Another day of praying that the batteries survive a little bit longer because the extra battery pack is not in my pocketbook today, but instead at home on the kitchen table.

Another day of crossing my fingers that the hardness I feel in the plastic tubes will not lead to cracking and thus render themselves useless because I do not have time to get to the audiologist for a repair until next week.

Another day with a headache after a long day at work brought on by eye fatigue and over stimulation from a variety of noises at loud volumes that I cannot always control. 

Another day of turning on the washing machine and the dryer and realizing that I can no longer hear those machines even though I am one room away – which leads me to set a timer to alert myself to the end of the cycles, and realizing that I can no longer hear the timer, either.

Another day of wondering just how in the hell I’m going to have the strength, fortitude and courage to get up and do this all over again tomorrow.

I put my precious aids in their own little bed – snugly nestled inside a plastic sanitizing machine complete with a UV light and charcoal brick for sterilization and moisture removal. I wish them a good night’s rest and thank them for their faithful service.

I set my alarm clock that shakes the bed and screeches at a decibel that could raise the demons of hell. 

My head hits the pillow, my left ear always down first because, as a kid, it was my “good ear” and I wanted to protect it at all costs – a habit that has carried on with me through adulthood. 

I drift off to sleep, simultaneously world weary and wild, and give in to the physical and mental exhaustion that comes at the end of each day of relying on my eyes to support my ears. 

The morning comes quickly. 

Another day. 

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.

The commercialism of isolated ASL signs is enough to raise my ire, but far worse is the offense committed by a hearing person that has discovered the American Sign Language alphabet. I cannot stand these people – and if you are this person, I make no apologies to you. This person either knows I’m hearing impaired or has spotted the hearing aids from a distance – and approaches me with the wonder and enthusiasm of someone that has spotted a unicorn. There are rarely – if ever- any introductions made, and the statement that comes flying out of the mouth of this most irritating creature is usually a variation of this, “I know sign – watch!”  

Then the show begins. 

I need to stand there, in painful silence, as I watch this blissfully ignorant but perhaps well-meaning hearing person attempt to arduously spell out their first name using the ASL alphabet. This is a usually laborious and slow process as they focus with utmost concentration on the bending and flexing of their fingers to create “letters”. Upon completion, I am met with wide eyes desperate for my approval – though I’m never quite sure what reaction is expected. Should I clap? Smile broadly and offer praise reserved for a dog that potties outside for the first time? Offer a cookie? What – what is it that you want? 

The spelling out of your name through the crude use of misformed finger spelling is the least offensive act that you have committed in my presence. The ultimate insult was when you first opened your mouth and stated, “I know sign!”

No. No, you don’t. 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 the 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 20+ 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. 

In the words of my favorite author and activist, Dr. Maya Angelou, “Do the best you can until you know better. Then when you know better, do better.”

Well, now you know better. 

Mr. Connelly was a kindly, older gentleman with watery blue eyes and an impressively smooth bald head with wisps of white hair.  He had the air of a storybook Grandpa – in his presence you felt compelled to walk to a park bench and throw crumbs to the pigeons.  Mr. Connelly, to me, was the wizard at the helm of an empire – he was the master of the machines and the maker of the molds. Those molds – the most necessary and simultaneously irritating part of my hearing aid wearing experience. They carry the sounds and create discomfort, all at the same time.  They are uniquely mine, for molds are custom made to precisely fit the wearer of the hearing aids.  

To experience the making of the molds as a child was a wonder…and no one did it better than Mr. Connelly with his air of performance and swooping about his office, retrieving the baubles and bits he needed, showing them to me each step of the way with a hint of reverence.

There was a cotton swab reserved for each ear with a string trailing behind. This bit came first, and was snuggly and neatly tucked into the depths of each ear canal. First, the tickle and then the pressure of it being plunged forward to serve as the protective plug warding off any drippings or dribbles of the modeling materials.

Then, it was time for the creation of the compound, the height of the mini theatrical production being staged by Mr. Connelly, the showman of all things hearing aids. Out came the flask, the glass stirring implement, and the magical pink powder.  He would gently, carefully and so precisely tap this pink powder from its teeny packet – much like knocking the sugar out of a Pixie Stix straw. He added a clear liquid and then the clinking began in earnest. The happy, tinkling, clinking of the metal stirrer going round and round inside the vessel, mixing up this magical elixir.  I would watch in utter fascination as the color changed from a pale peach to the most magnificent bright, neon pink. And the smell – that sickeningly sweet and sugary smell reminiscent of the mighty Hubba Bubba bubble gum. 

Mr. Connelly would then empty the sticky and doughy mixture into the palm of his hands and he alone would have the utter privilege of manipulating, squishing, squashing in all matters of formation until it reached its peak malleability.  Oh, the envy I would feel at not having the chance to mush that magic dough in my own little palms! My little creative soul would hope beyond hope that one day – maybe one day – Mr. Connelly would let me have a chance with this glorious goo.  Sadly, the day never came, but I cherished my vicarious sensory experiences of compound manipulation.

Lastly, he would stuff it into a large plastic syringe – the final step of this magical science production.  He would gently tip my head to one side, and squirt the compound inside, outside and all around my ear. The shock of it would make me shudder each time, for it was surprisingly freezing cold!  The ritual would be repeated once more on the opposite side, the freezing insertion expected for the second ear. 

Now it came to be my time to shine – for I needed to sit absolutely perfectly still for the two flip flops of the mini hourglass timer.  I would sit and stare at the sand sifting through with laser like precision, willing myself to not move an inch lest I disturb the melding of material to my ears.  When the last grain of sand had filtered through, Mr. Connelly would gently pop out the now hardened impressions which would have sadly faded back to a lighter shade of pink than I found acceptable.  They were gingerly placed into their shipping boxes, my hearing aids were placed back into my ears, and I turned on the world once more – eagerly awaiting our next visit to Mr. Connelly in six months time when we would once reenact our play in one act.

I regret that the process for mold impressions has become much more streamlined as time has marched on due to the mold clay being already mixed and ready to be inserted into the plastic syringe – which is nowhere near as large as I remember as a child. The hourglass timer is no more due to the fast hardening of the compound, though the sensations remain the same – that jarring feeling of icicles being thrust into your ears with no warning.

I require impressions less frequently now as an adult, as my ears no longer require increasing sizes of molds, but each time I sit in the chair and am asked to tilt my head, I remember fondly the kindness of the gentle soul that made my very first pair of hearing aid molds.  Thank you, Mr. Connelly, for being there for my very first step on this journey – peace to you, wherever you may be.