“The Obligatory Deaf Dos and Don’ts Post”

On By Mike U.In deafness, Lip-reading5 Comments

So, during your daily peregrination through life’s mundane drudgery you’ve managed to stumble upon that rarest o’ breeds: a deaf person. Yes, we do exist in the wild—we are not merely urban legends or the figments of some weird and uncanny acid trip. Deaf folks are real, and there’s no need to fear us. So, come out from behind that rock (there’s no hiding from deaf folks—we see you), screw up your courage and take the boldest leap imaginable: communicate with us. It’s not that difficult, and we don’t bite (hard), and who knows, perhaps you’ll come to understand that, hey, we’re humans, too, with unique stories to tell just waiting for a willing ear. All you need is a little patience (a little pizza helps, too) and you may come away from the experience with not only new enlightenment but also a new friend.

But first, a primer. Communicating with deaf and hard-of-hearing people can be challenging for the uninitiated and faint of heart. But fear not, friend—there are tools in the deaf communications tool kit that can help smooth the bumps and assuage the worries you may have when attempting to talk to a deaf person. So, follow along, don’t get lost, take copious notes and use a #2 pencil. Let’s go!

We’re Human Just Like You

Deaf and hard-of-hearing folks may have difficulty understanding speech, but we’re still human, not unlike hearing folks. We want to be treated with the same respect and dignity you show your hearing pals. Don’t talk down to us. Don’t assume we’re mentally challenged just because we have hearing loss and a resulting communication problem. Work with us, be kind and patient. Hearing loss really has no bearing on intelligence. Deaf people must learn things differently than hearing people sometimes, but that difference doesn’t lessen us as humans. Differences and diversity are to be celebrated, not scorned. You’d be surprised just how intelligent deaf folks can be if you give us a chance. When you see us as humans—as equals—you’ve taken your first step to learning how to communicate with us. So, congratulations, and a gold star for you! But don’t get cocky—there’s still much to learn.

Speak Normally

Many hearing people are unsure how to speak to deaf people. Do you shout? Do you jump up and down like some kind of maniac? Do you use fireworks and exotic spices? Pulleys and cogs? Diagrams and pie charts? No, no, no, maybe, and no. The worst thing a hearing person can do is alter the natural way he or she speaks. It really throws us off when you speak too slowly or too loudly or in a disjointed manner. Speech relies on a smooth delivery and a flow of words and ideas. Trying to lip-read a hearing person who is herking and jerking his words can be next to impossible. Lip-reading is exhausting, and the best lip-readers are successful in guessing only about 30% of the time. Shouting or speaking too slowly or in bursts makes our job even more difficult. If we can’t understand something you’ve said, we’ll let you know. Just speak normally, perhaps with a bit of raised volume if necessary, depending on how much difficulty we’re having understanding you. And remember: we’re trying our hardest to keep up with you, so try your best to accommodate us if we ask you to repeat or write down what you’re saying if we get stuck. Lip-reading—at least for me—can be like a train wreck when something goes wrong. My brain will get hung up on one particular word or sound I can’t understand, and everything else after than is just…gone. Train derailed. So, speaking smoothly and naturally can help alleviate this.

Look At Us (No, Really, It’s Sort Of A Requirement)

It goes without saying that lip-reading requires collecting all possible clues and bits of information, both aural and visual. That means we need to see your mug in its full, frightening glory. This may be off-putting for some folks, those among you who are shy or reserved or who fear eye contact. But alas, deaf folks need all the info we can get to try to guess what you’re saying, and that means as much face-time as possible.

Lip-reading isn’t just reading lips. It’s much more complicated than that. Words can be complex things, and the way a mouth forms a sound can vary greatly. Where is the tongue? In the front of the mouth? Back of the teeth? Roof of the mouth? How are the lips shaped? So many words sound exactly alike if you can’t hear all the consonants. Consonants really define words since there are so few vowel sounds. For me, I hear very few consonant sounds, mainly just the sibilant sounds such as the hiss of the letter S. I can’t discriminate most other consonants, so all I can hear are some of the vowels, which really makes it difficult to understand anything anyone is saying. Having a good view of a person’s face allows us to see the mouth more clearly, which helps us try to guess what’s being said.

Then there are the eyes. The ol’ windows o’ the soul. The gatekeepers of dreams. The last bastion before the blasted lands. Or something. Anyway, the eyes are incredibly important in lip-reading because they provide so much context. And not just the eyes, but the eye brows, too, so folks, please refrain from shaving off your eye brows if you ever plan on conversing with a deaf person. You’ll thank me later. Lip-reading by itself provides no context. It’s just sounds emitting from your pie hole. We must rely on your eyes, eye brows and facial expressions to determine context. Imagine saying the same sentence over and over, only changing your facial expression each time. That same sentence would have a different meaning with each utterance. For those who know and use sign language, facial expressions (along with body language) are exaggerated to convey context to prevent misunderstandings. So much is lost when one must rely on lip-reading. Humor, sarcasm, irony and so many other aspects of communication are absent without enough context to clue us in on the intent of a statement. Making sure we can view your face clearly allows us to gather as much intel as possible so we can make an educated guess as to what you’re saying.

Strike A Pose

Body language helps us understand context, too. With the limited info we have when we must rely on lip-reading, body language can fill in many of the blanks. Even if you don’t know sign language, you can still use your hands imaginatively to help get your point across to us. How’s your posture? Ram-rod straight? Slumped like Quasimodo? Open and expressive? Closed off? Demonstrative? Frozen? It helps a lot if you use your entire physical being to communicate. Lip-reading is a real-time event, relying on a steady stream of visual and aural clues being processed as you speak to us, and it is difficult and faulty and tiring and unreliable at best. So, rather than standing there like some strange, cryptic totem, why not get animated and use all of your tools to express yourself? You’ve got more than just one paint brush and you’ve got a palette of several colors, so use all of them to paint your sentences. The more info we have, the more we may understand.

Flex Your Vocabulary

Lip-reading success hinges on how much information we have to work with, so more complex words can sometimes be easier to understand. Single-syllable words are just evil, let me tell you. So many of them sound alike, and they’re elusive and quite naughty and rather ill-tempered and simply don’t like to cooperate.

When speaking to a deaf person, you may need to change your words in order to give more information. Instead of saying “dude,” you could say “individual” or “gentleman” or even “ne’er-do-well.” We may get hung up on that single-syllable word like a burr clover on a sock (I mean, how many words rhyme with “dude?”), but altering your word choice can possibly help us understand what you mean.

A bane of all deaf and hard-of-hearing people is the word discrimination test, wherein we must repeat words without any visual clues (no lip-reading). The more syllables, the more info we have and the better the chance we might guess correctly. “Use different words” was a common refrain of mine when communicating with my mom years ago. Let this be your mantra, Dear Hearing Person, when speaking to deaf folks. After all, what’s good for the goose is good for the aquatic waterfowl.

Be A Hero—Write It Down

Sometimes deaf folks simply can’t understand what’s being said, no matter how many times it’s repeated. I assure you, it’s quite embarrassing to ask someone to repeat himself over and over again. It’s even worse when we still can’t understand and must take the dreaded step of Asking You To Write It Down. This is a bit of a last resort for lip-readers, a sort of surrender, if you will, and it’s embarrassing. It slows down a conversation and inconveniences the speaker, and let me tell you, not every hearing person is keen on writing things down for a deaf person to read.

Plenty of times in my life I’ve come across folks who flat-out refused to write something out for me in order for me to understand. I could never fathom this belligerent attitude. If a blind person is standing on a street corner, waiting to cross the intersection, and asks a seeing person for help, would that seeing person refuse? Likely not. So why is there so much resistance from hearing people when it comes to writing things out for deaf people?

My own parents belonged to this odd, rude group of people who apparently didn’t have the time or the inclination to write stuff down for their own deaf son to read. I can’t explain it. It’s lost on me why people would become upset and refuse such a kindness to help a deaf person understand.

I once ran into a woman at the local Social Services office who became almost livid when I asked if she could please write down what she was saying because after several repeats I still couldn’t understand her. She glared at me, stormed off to her office, scribbled down the info and shoved the paper at me, then retreated. I was both shocked (how rude!) and amused (how bizarre!) by her behavior and thought she should probably not be working in Social Services if she has such disdain for disabled people.

So, hearing folks, I beseech you: if you can, if you have time, write or type what you’re saying. It eliminates confusion and shows compassion on your part for a fellow human who needs a bit of help. I am currently blessed to have a sister who tirelessly writes everything down, a counselor who types everything for me so I can fully understand her, and assorted medical personnel who do the same, willingly and graciously. Heroes, all.

Psst! Don’t Whisper!

My mom had a quirk. She whispered to me all the time. Why, you may ask? Well, I dunno. I asked her the same thing hundreds of times and she never had an answer. She obviously knew I was deaf—she’d witnessed my descent into deafness firsthand—yet for some obscure and inexplicable reason, she continued to whisper to me to the end of her days.

As a deaf guy who has never come to terms with deafness—indeed, who has railed against it for decades to no avail—I never liked being reminded of my deafness. Yet every time my mom spoke to me in a whisper, it served to remind me of all I’d lost. And it bothered me. Time after time I’d have to explain that I was hard-of-hearing and that I couldn’t understand her when she whispered, and I had to do this daily time and again. I don’t know why she did this. Was she afraid my dad would hear her talking to me? Was she in denial about my deafness? Did she simply not care? Was she trolling me? I never got an answer.

She’s been gone for six years now and I still am flabbergasted that she whispered to me for years, knowing full well I couldn’t understand her, and she refused to change. Indeed, several times I told her she needed to change the way she spoke to me if she wanted to communicate with me. She would say, “Why should I have to change the way I talk just so you can understand me?” And I, totally mind-blown, would reply, “Because I can’t change the way I hear in order to understand you.” This scenario played out countless times over the years. Nothing changed, ever. She refused to write things down, she whispered constantly, she would get upset if I asked for help with a phone call, she would ignore all the basic, essential little things that hearing people must understand when talking with deaf people, and she never gave me an answer when I asked why. I’ll never know. Needless to say, don’t whisper to deaf people. We can’t hear you. You must alter the way you speak because we can’t alter the way we hear.

Miscellany (For You Random Folks)

What makes an easy-to-lip-read face? Aside from the proper number of eyeballs, noses and pie holes, it helps if a person is clean-shaven. Facial hair is not only distracting, it also sometimes covers the lips and mouth and makes it impossible to lip-read. I once met a fellow who had a full-fledged I-kid-you-not Grizzly Adams beard. It completely covered his mouth. Gone! Kaput! Pie hole in absentia! He also spoke extremely softly. I never understood a single word he said (and yes, coincidentally, his name was indeed Jeremiah, no kidding; bonus points for those who get the Three Dog Night reference). I always felt badly when he’d try speaking to me because I had absolutely no shot at all of understanding him. I couldn’t ask him to shave his beard, so there wasn’t much I could do. Neatly trimmed facial hair is easier on lip-readers, but again, it’s a situation where you’re trying to squeeze a square peg into a round hole. It’s not going to work.

Sunglasses? Cheap ones, like ZZ Top prefer? They make lip-reading more difficult, too. I’ve always had trouble understanding people who wore shades and I never could figure it out. It’s not like the glasses covered their mouths. It was more a distraction, particularly the mirror-lens sunglasses. Out of curiosity, I googled this years ago and was surprised to learn many deaf people have problems lip-reading those with sunglasses. I think it goes back to the idea of the eyes providing context and emotion, and hiding the eyes deprives lip-readers of a lot of information. I had a girlfriend once who wore shades frequently. I mentioned a few times that I had trouble lip-reading her when she wore them. Did she stop wearing them while taking to me? Nope. Did that relationship last? Nope. (There was more to it than just her shades, but that was a symptom of something deeper.) Any distraction can throw off a lip-reader and cause that aforementioned train derailment. So, if you wear shades and come across a deaf person, please consider removing them for at least the duration of the conversation. Little things can make a big difference.

Chewing gum and eating? Yeah, pretty much impossible to lip-read someone with a mouthful of cheeseburger or Bazooka bubble gum. Things like these are simply not thought about on a conscious level by hearing people accustomed to interacting with other hearing people. It’s another one of those inconveniences where the hearing person must change behaviors in order to accommodate a deaf person. Basic rule o’ thumb: any distraction will derail a conversation with a lip-reading deaf person. A wee bit o’ kindness can fix this dilemma and facilitate an enjoyable and meaningful conversation. So, swallow that cheeseburger or spit out that gum (or the other way around, who cares? Be creative!) and help us understand you.

Background noise can be impossible to deal with for lip-readers. It competes with the few aural clues we’re desperately trying to process during a conversation. So, turn the tv down (or off), stop popping that bubble wrap (party time can wait) and try to ensure a quiet environment for conversing.

One More…And It’s A Biggie

The worst thing you can say to a deaf person is “Never mind,” or “I’ll tell you later.” This is a dagger in a deaf person’s aorta, an ice pick in the kidney of a hard-of-hearing person, a phosphorus grenade in the…well, you get the idea. When a hearing person dismisses a deaf person in such a flip and cavalier manner, it invalidates his very existence. You’re saying, “You’re not important enough for me to deal with your deafness right now.” As a deaf person, it’s hard for me to put into words just how this really feels. Being deaf causes me to be left out of so much in life as it is. Being told I’m not worthy of being included, that my deafness is too big of a drag, what a bummer, dude, go be deaf somewhere else…what can you possibly say in response to that? Honestly, if you’re deaf and have people like that in your life, you need to do some serious reflection and soul-searching. There are kind, compassionate people out there who will accept you as you are and who will never invalidate your life experience. Seek out those good folks. Find comity among those with similar experiences. Not everyone is a boorish jerk.

There are plenty of other tips for dealing with deaf folks, but I’ve rambled on far too long already. Suffice to say, simply, just give us a chance. We’re humans, just like you. We’re unique and we each have a story to tell if you’re willing to listen and willing to accommodate our deafness. You might learn something invaluable, and you might forge a lasting friendship.

“Coda: Farewell to a Dream”

On By Mike U.In deafness21 Comments
Image (c) Jeff Krouskop

I was twenty-six years old when music died. It had been on life-support for a few years, slowly fading yet stubbornly hanging on like some brittle yellow leaf which refuses to let go of the twig and clings hopelessly as autumn turns to winter. When if finally succumbed, it was like losing a close friend. Indeed, it felt like losing my only friend.

When I was eleven, my sixth-grade music teacher, Mrs. Bailey, took it upon herself to teach our class to play the ukulele. Perhaps she was a glutton for punishment, a closet-masochist who secretly delighted in the thought of a discordant, atonal symphony of inattentive brats banging senselessly on cheap instruments. Perhaps she had noble intentions of inspiring greatness in us, nurturing a possible prodigy or two and instilling a life-long love of music in us, the unwashed masses. Or perhaps she was bored. Who knows? And what did it matter? A few weeks of playing “I’ve Been Working on the Railroad” and “Row, Row, Row Your Boat” and we’d be done with it and we’d move on to greater, less embarrassing things in life.

But a funny thing happened. I fell in love. I’d never really paid much attention to music up to that point in my life. I was too busy being a baseball fanatic or riding my bike or playing with my G.I. Joe or little green army men to pay much heed to the finer things in life. But there was something about this strange little instrument that spoke to me. And I listened.

My parents took me to the nearest music store, fifty-five miles from the family farm, and bought a $12 ukulele for me. Twelve bucks is a lot of simoleons when you’re eleven years old, and I felt as though I were being entrusted with a Stradivarius or a Stratocaster. It had that funky Hawaiian sound that reminded me of Don Ho and Tiny Tim, and those four black nylon strings seemed to hold some kind of power, some hidden knowledge that beckoned me.

Mrs. Bailey taught us a few rudimentary chords (and by “a few” I mean three or four), which was about all our little sixth-grade pea-brains could handle. We learned a couple of old standards and goofed around and honestly, I think Mrs. Bailey was either deaf or had cotton in her ears because no normal human could remain as cheerful and encouraging around a gaggle of sixth-graders armed with lethal ukuleles as she could.

I had a Mel Bay ukulele instruction book at home and I taught myself a few more chords and immediately set about writing my first song, an epic masterpiece titled “Pickles and Cheese.” Three chords can certainly go to a musician’s head—after all, many classic rock songs contain only three chords—and I was sure I had achieved my masterwork. My mistake was playing it for my mom one day. (Dear Reader, I beseech you, if you ever write a song for the ukulele, DO NOT PLAY IT FOR YOUR MOTHER OR YOU’LL LIVE TO REGRET IT.) For years afterward, every time we’d have visitors at the farm, my mom would excitedly proclaim, “Mike wrote a song on the ukulele called ‘Pickles and Cheese!’ Go get your ukulele and play it for EVERYONE!” And I’d shrink to about half-size and shake my head vigorously and slink off to hide somewhere. It never failed. My magnum opus had become an albatross around my neck and would surely spell my doom lest my mom eventually forget.

About this time I began taking a real interest in guitars. I wanted one desperately, but a guitar was much more expensive than a ukulele. My dad—always prone to making promises he would delightedly and gleefully break—told me he’d buy a guitar for me if I learned to play the ukulele. I’d already learned more than anyone else in my music class and I was eager to learn more because man, I really wanted a guitar. But there was no pleasing my dad, a guy whose soul held no light or warmth or mirth or hope or any sense of keeping his word. As the months rolled by, I continued to teach myself more on the ukulele and my dad refused to hold up his end of the bargain (a recurrent theme throughout my life). I was upset, frustrated that he seemed to take a sick sort of joy in breaking promises, and I eventually reached the point of giving up hope. Then Christmas arrived, and with it an amazing surprise from my mom.

She’d spent $100 of her own money on a used Kay hummingbird acoustic guitar. It wasn’t fancy and the action was too high but it was beautiful, cherry sunburst, and along with a case and a small bag of picks and an instruction book, it contained unlimited hope and potential. I really didn’t know what to think, I was so shocked. My dad was furious, of course, and yelled at my mom for doing something as outrageous as supporting her child’s dreams, and he made it clear to me many times that he’d break the guitar if I played too loudly. Yeah, he really knew how to ruin everything, and his threats and the way he treated my mom for doing something kind for me led to a sense of doom and guilt and embarrassment that would soon manifest itself in an unexpected way.

I played around with the guitar for a few days, then abruptly put it away. Looking at it made me feel worthless, undeserving, and my dad’s threats had destroyed any joy I’d felt when my mom had given it to me. I simply couldn’t bear to play it. So I put it away. For five years. And tried not to think about it, or music, anymore. My mom never said anything about this but I know it hurt her, and I don’t know if she ever understood why I gave up on it. I was too young to accurately articulate what was going on in my head. Fortunately, this hiatus would end just as abruptly as it had begun.

I was sixteen when I suddenly developed the urge to dig my guitar out of the closet. I’d become heavily interested in music by this time and I suppose this was a natural progression. I grabbed the song book that had come with the guitar and sat down in my bedroom and began teaching myself to play. It was as though a switch had been flipped, as if I had only been waiting for the right time to arrive, and that time had finally come. After two straight weeks of teaching myself chords, I began picking up songs off the radio and playing them. My hearing was normal back then and I had a good ear and could play songs after only a listen or two. I gravitated toward guitar-oriented music, of course, and for me this meant bands like Boston, Journey, Kansas, Styx, Rush, Eagles, Badfinger, Jefferson Starship, Aerosmith, Led Zeppelin and other rock bands whose songs were carried by the few radio stations I could pick up at the farm. I’d lie in bed at night with my little transistor radio under my pillow and listen to KOMA out of Norman, Oklahoma or X-Rock 80 out of Juarez, Mexico (both Top 40 AM stations) and dream of hearing my own songs play on those stations one day.

The summer of my seventeenth year, I had a job pumping gas at a Texaco station in town. Once again, my dad had made one of his sketchy promises: he would pay for an electric guitar if I’d pay for the amplifier. I’d already picked out the guitar I wanted and set about working to earn the money for the amp. Of course, my dad backed out again and I had to pay for both the amp and most of the guitar. He was angry because I was happy and had kept my end of the deal. When we went to the music store to pick up the guitar and amp, he said, “If you play that thing too loud, I’ll break it!” I mean, this guy had a natural talent for being an asshole. So, with Mr. Guilt Trip having said his piece, I set about exploring the world of the electric guitar.

I was writing music and lyrics by this point, and to say music—and guitar—had become an obsession for me would be quite an understatement. I was living and breathing music. When I wasn’t listening to music, I was playing my guitars. My mom told me many times that she’d lie awake in bed at night, waiting for me to return home from my job at the gas station, because she knew I’d play my guitar for awhile before I went to bed. I had no idea she had been doing this. It was incredibly touching, and I felt as though maybe there was someone who supported me after all.

Music was also my therapy. I grew up in a severely dysfunctional home where there was domestic violence. My dad was a monster who had no qualms about knocking his wife around now and then or making his kids hate themselves. I was my mom’s self-appointed protector. It was my job to make sure my dad couldn’t harm her, and it was an exhausting and never-ending job. And I mean that. Even today, at age fifty-seven, with both my parents gone, I’m still dealing with major depression and PTSD from my childhood and several events that took place involving my dad using physical violence against my mom. I had no close friends so I had no one to talk to about any of this. I was painfully shy and extremely introverted and suffering from more than my share of self-hatred. All I had were my guitars. I would pick them up and disappear into some alternate reality where things were peaceful and there was beauty and kindness and no violent, abusive fathers and no need for young boys to be hyper-vigilant to the point of developing major depression and PTSD. Music was my balm, my elixir, my panacea. I would oftentimes fall asleep with my guitar in my hands, having drifted off to the soothing tranquility of those six magical strings. Music was everything to me. It was life, it was hope, it was healing, it was safety. And it was all too fleeting.

By this point, my mind was made up. I was going to be a musician. I was going to start a band, write original songs, record albums and tour. It was going to be my songs I’d be hearing on KOMA and X-Rock 80, my albums I’d see in music stores, my band’s name on the marquees of venues across the land. Everything was set. All I had to do was continue playing, keep improving and never give up. Nothing could stop me.

Well, they don’t call me Captain Irony for nothing. In late winter of my senior year of high school, I developed meningitis during a basketball tournament at my school. It was my last hurrah as a high school athlete (one who had been relegated to the bench for the most part in football and basketball due to religious discrimination), and I ended up missing the state tournament. I was seriously ill, with a high fever that lasted for about a week. I’d never been that sick prior to that, and haven’t since. I missed two weeks of school. And thus began my journey into deafness.

It started slowly, with my family noticing I was saying, “Huh?” quite often. I began missing words on spelling tests at school—something that never happened before—due to not understanding what word the teacher was saying. As time went by, I began struggling to understand speech and ended up with my first pair of hearing aids (which didn’t help at all) at age twenty-one in 1985. I could still understand music for the most part, although I was beginning to have trouble with it, too. It took me longer to figure out songs, and there were many instances where I couldn’t decipher chord patterns or solos at all. But I kept playing because playing guitar was all I knew at that point. It was everything. The more I improved as a guitarist, the worse my hearing became. I continued writing music and absorbing whatever guitar-related literature I could get my hands on, but in the back of my mind I could feel things slipping away, and it frightened me.

Music died for me in 1990. I was twenty-six. I developed a serious bout of strep throat which infected my ears, and lost a huge chunk of my hearing. I was immediately tone-deaf. I recall trying to play my guitars after that and not being able to differentiate between notes and chords. Everything sounded the same. It felt like the wind had been knocked out of me. Just like that, my dream of being a musician was over.

I felt lost without my guitars. I’d always carried a guitar pick in my pocket everywhere I went. It was my lucky talisman. I reckon its luck had finally run dry. I could no longer improvise. I still knew how to play, but I wasn’t able to understand what I played anymore. I felt like that little sixth-grader noisily strumming the strings of that ukulele so many years ago before I had any idea what I was doing. All I had now were memories of music, memories of playing guitar.

What’s more, I had lost my therapist. I could no longer use my guitars to calm myself and keep myself sane in a crazy world. When I’d try playing, it just made things worse. The sense of loss was palpable and felt so unfair. I wanted to blame someone, something, for this mess, but there was no one to blame. I was sick as a teenager. I fell ill with meningitis during a basketball tournament. Years later, I came down with strep throat. That was it. I was angry at God for a long time (and I still have questions about it, let me tell you). Humans have a need to assign blame when things go wrong in order to maintain the facade of an orderly universe. When bad things occur, if we can pin the blame on someone or something, we set the world to order again and can go about our ways being angry at the person or thing that caused our pain as we grieve. But what to do when no one is at fault? There’s no closure. There are only questions that remain unanswered and which leave us with a sense of a universe that is totally random and merciless.

I have memories. Playing a classical piece in an ensemble at the regional music competition my junior year of high school. Late-night jamming with my drummer buddy Jeff at the school’s music room during freshman year of college. Recording myself jamming and being humbled and shocked and delighted at the reactions of people who listened to those jam tapes. And I still have my guitars, all three of them, in my closet as I type this. They will be with me always, even though I haven’t played them for years. I will remember falling asleep with my guitars in my hands, my arm-hairs vibrating to loud power chords, jamming alone with my eyes closed and my mind far, far away from all the pain and frustration of the real world.

I still have music, of sorts. My mind constantly has some background song or other playing at all times, something that’s been with me for decades—different songs for different occasions. During times of extreme stress, such as my mom’s death, my dad’s physically assaulting me and threatening to kill me, the ending of relationships, music was there in my head, working its soothing magic and holding me together. I can’t play my guitars anymore, nor can I understand any music that’s come out since 1990, but I have all those songs from my past that have never abandoned me. So, in a weird way, music is still the constant in my life, the linchpin, the cornerstone of everything I am. Put simply, despite being deaf, I can’t live without it. Yes, Captain Irony again.

“Service Dogs, Rabbit Hutches and ASL Humiliation: My Introduction to Deaf Culture”

On By Mike U.In Deaf Culture, deafness2 Comments

In 1993, I relocated from the family farm in Utah to a tiny Colorado town (population 800). I was enrolled in a tech school, seeing a counselor every week for major depression, PTSD, sleep problems and issues related to hearing loss, and hoping to change my fortunes in life. My therapist, a wonderful woman named Meryl who helped facilitate my apartment hunt and my tech school enrollment, mentioned an American Sign Language class which was to be held that fall two evenings a week at the tech school. She gave me the name of the ASL teacher, and off I went to meet the person who would introduce me to ASL, Deaf culture, and who would leave a bitter and frustrating first impression on me of all things Deaf.

Kay (not her real name) was from back East, profoundly deaf and had apparently worked under former Sen. Ted Kennedy on the Americans with Disabilities Act. She wore hearing aids but was vocal and her speech was quite clear. Her hand-signing was amazing—fast and fluid and effortless. I often marveled at how anyone could use two languages simultaneously—speech and signing—and be so proficient at both while so many hearing people can’t even use proper English alone. She was jovial, loud, supremely confident and seemed like a good person.

She had a small plot of land about four miles from the town where I lived, and she had me come over frequently to perform odd jobs around her place. She had a beautiful garden and some small farm animals. One task she appointed to me was to build a rabbit hutch. Although I’d grown up on a farm, I had very little experience with rabbits, but I winged it and constructed a decent hutch from scratch. I enjoyed the project, although she could be controlling and forceful, sometimes demanding. But she was pleased with the results.

She also had a black service dog of indeterminate breed (I’m no canine expert, alas). I’d never been around service dogs before so it was interesting seeing how this dog and this person interacted with one another. The dog was intelligent, highly trained and followed instructions well. The way he alerted Kay to noises was astonishing at times. Door bells, phones, alarm clock, whatever, this dog knew exactly what to do. Plus, he was friendly and hey, who doesn’t love dogs?

Kay appeared to be taking me under her wing. I was struggling with hearing loss and depression, and the only support I had up to that point was my counselor, whom I’d been seeing for a couple of months. This area is extremely rural, dotted with small towns amid vast expanses of farmland. There were no deaf support services of any sort for hundreds of miles. I was the only student in Kay’s ASL class who had hearing loss. I think she definitely understood my frustration with my hearing problem and how it impacted my life. She spoke at length about her own depression and how her deafness had exacerbated it over the years. If anyone could understand, it was Kay.

The ASL class had about nine other students besides myself, and all of them were nurses from the local hospital who were learning ASL to communicate with deaf and hard-of-hearing patients. As I was the lone deaf—and male—student, I felt out of place, but everyone was friendly and patient with me. A woman who worked with Kay attended the classes and I sat beside her as she did real-time captioning for me on her laptop computer. It was difficult to follow what Kay was signing and what was being typed on the screen as Kay spoke.

There was such irony in the fact that I was the only student with hearing loss, yet I was also the worst student when it came to picking up ASL. I had never been a visual learner. I excelled all through school by listening and taking notes, but that all changed when I began losing my hearing and had to switch to visual learning methods. I struggled making the connections between hand-signs and words during Kay’s lectures. It just didn’t click in my head. I had the same frustrations trying to learn signs out of my textbook. At one point midway through the class, we were assigned to give a presentation to the class using only hand-signing. The other students breezed through this assignment. When my turn came, it was a disaster. I couldn’t remember many of the signs and my presentation was halting and disjointed and embarrassing. I was humiliated. How could I ever come to grips with my hearing loss if I could never even learn ASL?

Kay was encouraging and supportive. But there was always something else there. Although she was confident on the outside, it occurred to me that she was struggling with her own demons. She had erected a facade of cheerfulness and positivity, but I could tell she wasn’t quite the strong and happy person she put forth to others. Her controlling nature continued to come into play as she began to expect—and demand—more and more from me.

Kay spoke of Deaf culture often in class, and even more so to me in private. In her life back East, she’d been deeply rooted in Deaf culture and knew some influential people in government and social circles. But here, in this area that can be best described as “a wide spot in the road,” there was nothing. No support for deaf people anywhere. I’m sure it bothered her, coming as she had from a deep and connected culture of Deaf people. I believe she wanted to establish something similar here. And that’s where things went off into the ditch.

Near the end of the ASL class, Kay told me about a program wherein deaf people are trained to go around to area schools and give presentations on deafness and what it’s like to be deaf in a hearing world. Of course, it was her plan for me to undergo this training and become an advocate of sorts, traveling around to schools and speaking about deafness and how it affects daily life. The problem? I would have to drop out of tech school to do this, something I was not willing to do. Kay spoke of this to me a few times, excitedly and forcefully imploring me to do this, that I’d be just the person to do it, and I could tell she had already made up her mind that I was going to do it.

I had a full plate at the time. I was in school, struggling to learn with no support services whatsoever to help out during class. I was in counseling, trying to sort out my chaotic life and find a way to slow down my rampaging depression and treat my chronic insomnia, as well as deal with PTSD from a severely dysfunctional childhood. I needed stability and a safe haven from a world outside my control. The last thing I wanted in my life was for someone to come along and upend everything I was trying to do.

Kay and one of her friends came to my apartment late one Friday night before the last week of ASL class. She informed me that I was to go to a neighboring town with her early the next morning to attend the training seminar. She had her mind made up. I was going to do this for her. She would not take no for answer. It was surreal, as if she were experiencing some sort of mania. She seemed too hyped about it, too cheerful, and she was behaving like a typical control-freak. I grew up with a control-freak for a father and I recognize this behavior in others. She refused to listen to my objections, repeatedly saying she’d be by the next morning to pick me up. Finally, she and her friend left. And I was pissed.

I didn’t sleep at all that night. Chronic insomnia is bad enough; add in extreme stress and it goes off the charts. I stared at the darkness all night, trying to decide what to do. I wasn’t about to give in and drop out of tech school to do her bidding. I wasn’t going to turn my back on everything I’d ever known in the hearing world and jump head-first into the Deaf world just because she demanded it. Kay had been profoundly deaf all of her life; I was dealing with late-onset adult hearing loss. All my life had been spent in the hearing world, all my hopes and dreams, failures and regrets had occurred in the hearing world. I could still hear a little but had tremendous difficulty understanding speech. All Kay knew about life was from a Deaf perspective; everything I’d experienced was from a hearing perspective. I was stuck between two worlds, trying to find my way, and what Kay was doing was attempting to force me to integrate into her world. I wasn’t ready to do that, nor was I willing.

Seven in the morning arrived and there she was, pounding on my door. I opened it and she told me I had fifteen minutes to get ready and she’d be waiting downstairs. I was exhausted from lack of sleep, angry at her attempts to control me, and extremely frustrated that she refused to listen to me when I had told her multiple times I was not interested in her plans for me. I paced frantically for ten minutes, then went downstairs to decline one final time.

Yeah, she was furious. She glared at me, bared her teeth, and cursed at me, shouting, “I thought you were different from all the rest!” Yeah, I was mortified, standing there in the crisp morning air, wondering if my neighbors could hear her swearing and shouting. I tried to explain to her why I couldn’t do what she wanted, but she refused to listen. All she could say was how angry she was at me. Her knuckles were white as she gripped the steering wheel. Finally she took off and left me standing there in the cool morning sunlight. I was humiliated.

The following Tuesday, we were to hand in our final assignment, a paper we were to write on anything to do with deafness. I had written about my battles with life-long major depression and how my progressive hearing loss had made everything so much worse in my life. I titled my paper “Deafness and Depression.”

As class ended that night, I was the last one to hand in my paper. Kay took a look at the title and sneered, ”’Deafness and Depression…’ What do YOU know about deafness and depression?” The expression on her face spoke volumes; it dripped with hatred and disgust. I was shocked, but not completely. I had expected her to be angry, but not that angry, and certainly not to the point where she’d completely invalidate my own life experience with deafness and depression out of petty spite because I’d refused to allow her to control me. I just shook my head and walked out. I didn’t bother attending the final class two nights later. I expected her to fail me but she gave me a B-. And that was the last time I ever saw Kay.

I know a little about Deaf culture, much of which I learned from Kay, but I’m not fluent in all the societal and cultural mores and norms therein. I’m aware that those who abide by Deaf culture see deafness as an identity to be fiercely defended, not as a disability to be fixed. Kay was certainly an adherent to this philosophy, even though she wore hearing aids. She took pride in being Deaf. She never let it hold her back from achieving her dreams. She grew up in an area where Deaf culture thrives and she had a lifetime of support and encouragement and acquaintances and education that reinforced the idea that Deafness was not a disorder but an identity to be cherished. My experience has been the opposite in all ways. The gulf between Kay’s philosophy and my own was vast and perhaps impossible to bridge. Her approach led to the death of a friendship and feelings of shame and worthlessness that dogged me for years. It also led to a distrust of all things Deaf. And that’s unfortunate because I realize she was one person with problems of her own, who overstepped many boundaries in her attempt to force me into being what she wanted me to be. In that regard, perhaps she wasn’t an ideal representative of Deaf culture, but simply a representative of flawed humanity, as are all of us. I never received an apology from her. I have no idea where she is now.

All these years later, it seems to me that there should be a better way of trying to bridge the gap between the hearing and the deaf worlds than to be so quick to segregate the two from one another. I live as a deaf guy in a hearing world that doesn’t understand or accept deafness, so I don’t fit in. I don’t fit into Deaf culture because I don’t know ASL and I’m not willing to forsake everything I’ve ever known to convert to what really is another culture. And even if I were willing, there’s no way to do it in my part of the world. So I isolate myself and dwell in the murky darkness between those two worlds.

There has to be a better way.

Featured

“The Deaf Guy”

On By Mike U.In deafness3 Comments

Let’s talk about labels, shall we? You know, those quaint little terms people give to one another to justify demonization and dehumanization? Yeah, those things. Whether it’s third-grade bullies on the playground harassing the kid who’s a little different, or the former leader of the free world calling immigrants “drug dealers, criminals and rapists” in order to justify kidnapping children and placing them in cages, all of it really comes from the same dark place.

Humans have a disturbing capacity to attack those who are different. “Otherism” serves this purpose well and has been used to justify the most heinous acts in human history. It’s a power-trip, one-upmanship to the extreme. You want to control an individual or a group of people? Stick a label on them, preferably an unsavory one that dehumanizes them, and suddenly you have the power to destroy them because they are outsiders, interlopers, outcasts, others.

Religion and politics have a rich history of otherism and persecution of those who don’t belong to their specific ideologies. It’s been said that more people have died in the name of some god or other than for any other reason in history. Whether this is accurate or not is beside the point; a look around the world throughout mankind’s infestation of this planet shows that history is rife with persecution, torture and murder of those who don’t adhere to a particular religious system, no matter what system it may be. As for politics, we need only look at our own two-party system here in the U.S., where the party which is hell-bent on destroying democracy considers the other party a cabal of satan-worshipping, cannibalistic pedophiles and uses this dangerous and ridiculous cult conspiracy theory to justify its attempts to overturn our elections and overthrow our government, not to mention its constant dehumanization and labeling of marginalized groups such as immigrants, LGBTQ+, people of color, the elderly, disabled and poor and anyone else who is “different.” Again, a glance at history will show atrocities committed against others as a central thread of human evolution.

What does this have to do with a deaf blog, you may ask? A lot, actually (and thanks for asking).

I’ve been labeled for various reasons throughout my life. I was born and raised in a particular western U.S. state notorious for being dominated by one particular religious system. I don’t belong to that particular religious system, so there was plenty of discrimination during my school years. It was made clear to me early on that I was an outcast, a pariah, and would forever be an outsider unless I became “one of them” and ceased to be “one of the others.” Academically, athletically and socially, there was discrimination. I even had a “pet bully” who delighted in terrorizing me for years for no apparent reason. I was simply “the non-mormon kid.” I was also “the out-of-town farm kid,” which further disqualified me from any semblance of equality and inclusion in that tight little wad of happy humanity at school. My home life wasn’t much better– I was simply invisible.

Labels are sticky things, hard to peel off once applied, and when you find yourself covered in them, sometimes you begin to believe them. You become overly sensitive to them, and yet desensitized to them at the same time—a strange paradox. Some labels contain a kernel of truth but are applied in such a way as to exaggerate that truth into something monstrous. This is especially painful with regards to physical traits and can haunt these victims for life. Some may be a nod to some personality trait or other quirk and may seem humorous to some. I was “the brain” in school due to my academic efforts (trying to fit in, an exercise in futility). At home I was “the disrespectful kid” for standing up to my abusive father. At various other times I held other odd titles, some of which were sort of funny and others which weren’t funny at all.

Many years ago, I had a part-time job cleaning toilets and mopping floors (there are not a lot of options in rural areas for deaf people). I was known as “the janitor guy.” Of all the people who worked there, only one person ever took the time to learn my name. Otherwise, it was “Hey, Janitor Guy! Come clean up this mess!” The thing with labels is they’re lazy. It takes zero effort to make up some cute little moniker for someone in order to lop that person into some anonymous group of others, but it takes effort to see that person as a unique human being. To everyone in that store (except Arnie—thanks, man), I was just “the janitor guy,” a sub-species of Earth organism not worthy of attention or inclusion. Sure, I cleaned toilets, but that didn’t define me as a person. It was only something I did for awhile and had no bearing on my humanity and my place in the cosmos.

And now I’m “the deaf guy.”

Again, there’s a kernel of truth here (heck, there’s an entire cob’s worth of kernels), but this label bothers me on a particularly deep level. You see, I don’t want to be deaf. Deafness has taken too much away from me for me to harbor any warm, fuzzy feelings about it. It’s not a cute label (like being “the Star Wars fanatic” as a teen), and it’s certainly not something I cherish (unlike “brother” or “friend” or “uncle”). This label just cuts too deeply and has produced too many scars.

Whenever I interact with anyone, the first thing I must explain is that I’m deaf. This immediately creates the scenario of “Hearing Person and Deaf Guy: A Study in Frustration, Confusion and Humiliation.” Right off the bat, I’ve become the deaf guy, and this is how everyone who interacts with me remembers me. It’s inescapable and there’s no way around it and it forces me into that group of nameless others who reside along the periphery of normal human experience.

Man: “Honey, guess what I saw in the store today? A deaf guy!”

Woman: “A deaf guy? Oh! Was he deaf?”

Man: “Yes!”

Woman: “Was he confused?”

Man: “Yes!”

Woman: “Was he embarrassed?”

Man: “Yes. He was deaf, after all!”

(cue canned laughter and sitcom music as scene fades to commercial)

Obviously, I joke about this stuff (if I didn’t have a sense of humor, I don’t know how I could ever possibly cope with deafness or depression or anything else) but it’s to prove a point: the hearing and the deaf live in completely different worlds. For someone such as myself, who experienced late-onset adult deafness due to meningitis as a teen, I’m not only “the deaf guy,” I’m also a member of the sub-group of others called “the in-betweeners.” I’m too deaf to fit into the hearing world, but not deaf enough to fit into the Deaf world.

I have severe hearing loss in both ears. I lip-read but it’s all guesswork and I miss a lot of words to the point where I must rely on people writing or typing what they say in order to understand. I can still hear some sounds. I don’t know sign language, and even if I did, I don’t know anyone who’s deaf or hard-of-hearing or who knows ASL. So, yeah, I’m one of the “too something but not something enough” subgroup of others. I remember my normal hearing days and miss them. I know a little about Deaf culture (something I’ll write about soon) and there is virtually nothing in my rural area in terms of deaf support services or groups. I view my deafness as a disability, something that runs counter to the view of many Deaf folks. Perhaps if I’d been born deaf or lost my hearing as a young child, I’d be more inclined to embrace it as an identity rather than a disability. As it stands now, deafness has robbed me of my life’s dream of becoming a musician; it has resulted in isolation and the inability to relate to other people; it has damaged my sense of self and has resulted in a lot of pain and loneliness. I can’t view that as a good thing no matter how hard I try.

Alas, I have to accept it at some point. It’s the only way to achieving peace within myself. I don’t want to be the deaf guy forever. I want to be Mike, a guy who has value as a human being, who just happens to be deaf. No more labels. Just truth.

“An Introduction”

On By Mike U.In deafness26 Comments

Hello, and welcome to my blog. My name’s Mike and I’m currently struggling to navigate the confusion, frustration and isolation I experience daily as I travel along my deaf journey.

I have severe hearing loss in both ears caused by meningitis as a teen, and its progressive nature has impacted my life in both pedestrian and dramatic fashion. Although my deafness has been a constant companion for more than 40 years, I have never come to grips with it; it’s a tenuous relationship with an unwelcome guest who will never leave and whose insidious nature has infiltrated all areas of my life.

Yeah, you could say I hate being deaf. Hence this blog.

This is my attempt to reach out from my isolation to see if there are others like me who are deaf and feeling shunned or who have become reclusive due to deafness, not knowing sign language or other deaf people, and who have essentially fallen by the wayside as life passes them by. I hope to write about my experiences as a functionally deaf person in a hearing world, the struggle to survive as a disabled person in a world where the disabled are generally ignored or deliberately scorned, and the coping mechanisms I’ve developed over the years to try to stay afloat in a rural area where I have no deaf friends or acquaintances and very little in terms of deaf support services.

Despite all of this, my deafness does not define who I am as a person—it is only part of who I am. In my story, deafness is only one of the characters in a cast of many. Finally coming to accept my deafness is my goal; perhaps learning to co-exist with—or even embrace—my deafness is my only chance of finding peace in my life. I hope to hear from others who may be in similar situations. Discovering we’re not alone could be the breakthrough we need to live better, more fulfilling lives.