“Any Deaf Writers Out There?”

On November 18, 2021November 19, 2021 By Mike U.In Deaf Culture, deafness, Disability, Lip-reading13 Comments

When I began this blog in July 2021, my primary goal at that time was to connect with people experiencing deafness in any of its forms. My counselors had suggested I reach out via blogging since my deafness prevents me from communicating in “normal” ways (in person, phone, etc.). I’ve always loved writing and in my younger days had actively submitted short fiction to publishers (and racked up rejection slips along the way). Certainly a blog could combine my love of writing with my need and desire to connect with other deaf people, I thought. So, I made the leap to WordPress.

My blog languished in the shadows for two months, virtually invisible. I plugged away at writing essays about my deaf experiences that no one wanted to read and dutifully checked my stats page every day. (What stats? They’re weren’t any to track.) My initial excitement over beginning my blog project began to wane and I found myself dreading to check my blog each day, knowing nothing had changed and not knowing what to do about it.

Finally, in late September, I came to the proverbial crossroads: my blog was going nowhere, so I could either abandon it, or try posting some of my poetry I’d had sitting around for years. What did I have to lose, I thought. No one would read it anyway.

So I posted some poetry, and views began to trickle in, with an occasional like. It was exciting to see activity after two months of silence. Now and then, a rare comment would appear, and the sensation of making a connection with someone else was both startling and welcome. And the more I posted my poetry, the more things picked up. I found the WordPress community to be the kind of place I’d always wanted to experience: a group of like-minded people sharing their hearts and souls through writing, and supporting and encouraging one another. It struck me how serendipitous this journey had become: I’d started out looking for fellow deaf people, but had found fellow writers instead. My deaf blog had switched gears and become a poetry blog, and I was seeing some progress, albeit in baby steps.

Now, perhaps I’m greedy, but I still want to find other deaf people. I need this to help me in my journey along my road to deaf acceptance. So, I’m sending out an invitation to anyone in the WordPress community who is deaf to any degree and who shares a love of writing to make yourselves known. I’d like to hear from you and have the best of both worlds by getting to know other deaf writers. I want to read about your own journeys with deafness and writing. I want to hear about how you cope with deafness, how it affects or defines your lives, if you consider it a blessing or a curse, if it has changed you as a person, if you struggle with it daily like I do or if you’ve come to accept it as part of who you are. I’m also interested in how deafness has affected your writing in terms of both style and subject matter.

It’s my personal experience that deafness is extremely socially isolating. That’s my reality. I know no other deaf or hard-of-hearing people. I don’t know sign language. My area is too rural to offer much of anything regarding deaf support services. I just want to meet other deaf writers and share our experiences and learn from them.

If you’re interested, leave a comment or use my Contact page to connect. I’d love to hear from you. My deaf essays can be found in the Essays section of my blog in case anyone cares to explore them.

Finally, thank you, WordPress community. Your kindness is appreciated. You’ve all been a bright light in what has been an otherwise dark period for me.

“The Darker Side of Hearing Loss”

On September 27, 2021March 30, 2022 By Mike U.In deafness15 Comments

……….

Recently, I read of a study by Johns Hopkins University concerning the relationship between hearing loss and dementia. According to the study, people with mild hearing loss were twice as likely to experience dementia, those with a moderate loss were three times as inclined, and those with severe hearing loss were five times more prone to develop cognitive issues that fall under the umbrella of dementia. Contributing factors include accelerated atrophy of brain tissue caused by hearing loss as well as the profoundly negative effects of social isolation many deaf people face.

I was vaguely aware of this, having read something about it in the past, but I was not prepared for the statistics this study presented. So, of course, my overly analytical mind seized onto this like a Chihuahua with a squeaky toy and wouldn’t let go. You see, dementia is one of my greatest fears, and I have the dubious honor of hitting the Dementia Trifecta: I have severe hearing loss, major depression and severe chronic insomnia, all three of which are precursors to some form of dementia. Add to this the fact that dementia runs on both sides of my family and you have a nightmare scenario in the making.

I’ve battled major depression for as long as I can remember, dating back to early childhood. Much of this originated due to the severely dysfunctional family in which I was raised. My depression has been, for the most part, resistant to treatment. There’s a brain chemistry component involved, of course, but I’ve never found an anti-depressant that actually did anything to lessen the effects of my depression. Talk therapy helps to a degree, but at one hour every two weeks, it’s not something that has a lot of carry-over during the interim between sessions. PTSD has an effect on my depression as well, and has contributed to the futility I’ve experienced with regards to my inability to make any significant progress in treating my depression. EMDR therapy caused a disturbing negative reaction which left me experiencing several strange physical symptoms, some of which are still present thee years later.

My sleep disorder has been traced back to one particular incident involving domestic violence when I was eleven years old. It forced me to become hyper-vigilant at an early age and I ended up “training” myself to stay awake until my father went to bed and was asleep. Only then could I know my mother was safe, and only then could I allow myself to try to sleep. However, years of this hyper-vigilance produced insomnia so intense and pervasive that I still suffer from it decades later. Nothing—absolutely nothing—has ever put a dent in my insomnia, and after years of therapy and every treatment method I could find, I finally surrendered to it and accepted that it was not going to go away. And it hasn’t. And its effect on my life is profound.

Of course, the reason I began this blog is because I’m deaf. Hearing loss has such an over-arching impact on one’s life. Those of you reading this who are deaf will understand; those of you who are not cannot understand unless you have a close family member or friend who experiences deafness. Even then, it’s not quite the same as being deaf, but it does offer a uniquely intimate window into the deaf experience.

Deafness is all-encompassing. Everything is affected by it to one degree or another. Everyone knows, for example, that a deaf person has difficulty or a complete inability to enjoy music, but how many hearing people know that hearing loss can affect the way a deaf person walks? Or that it is a possible precursor to the horror of dementia? How many hearing people know that deafness-induced social isolation can lead to issues such as poor eating, addiction, failing physical health due to lack of exercise and self-care, depression, and even heart disease? There’s much more going on here, much more at stake for those who are deaf, than meets the eye (or the ear, as it were).

In my own unique case, there appears to be a nasty synergy occurring among my Big Three Issues: deafness, depression and insomnia. When one gets worse, the others follow suit, thus creating the proverbial “vicious cycle,” and can lead to a snowball effect. When I can’t sleep, my depression worsens, which affects my sleep to a greater degree, which causes my depression to plummet even more, which causes my hearing to suffer from both fatigue and an inability to concentrate deeply enough to lip-read. Also, when I’m lacking sleep, my ears ring much more loudly and incessantly and it actually feels as though my inner ears are feverish. When my remaining hearing suffers like this, it makes my depression worse, and it becomes a situation where it feels as though I’m spiraling downward, caught in some uncanny and surreal maelstrom. When this occurs, the only remedy is sleep, and lots of it. Which, of course, is difficult for me to attain.

What does this have to do with dementia? And am I guaranteed to slip into the darkness of that terrible state of being? I suppose I should explain why this concerns me so much.

My grandmother on my father’s side developed dementia in her ’80s. One of my father’s older sisters followed suit and became so violent that she actually would shoot at people. My father eventually fell into that very same black hole, which ultimately led him to take his own life at age 76. During one of my last interactions with him, in 2015, he was in a paranoid rage, completely out of his mind, and he punched me and threatened to shoot me. I had to file a police report for physical assault. He lied to the police about what happened and they couldn’t charge him because there were no other witnesses. I saw him only twice shortly after that. By the time he killed himself, he was completely in the throes of dementia.

But that’s not really why I’m so concerned. The main reason for my fears of falling prey to this insidious disease has to do with my grandfather on my mother’s side.

I recently posted a trilogy of poems I penned about my grampa, alluding to his descent into dementia. I wrote these pieces out of feelings of both sadness and guilt. Sadness because of never getting to know him as well as I would have liked, and guilt for not being able to force myself to visit him in the nursing home after a series of strokes decimated him and then the indignity of Alzheimer’s Disease settled over him like a filthy cloak, forever obliterating what was left of my grampa.

He was in the hospital after one of his early strokes. My mom, my two sisters and I went to town to visit him. There he was, my big Viking grampa (half-Danish, half-Norwegian), broad shoulders and even broader ever-present grin, sitting on the edge of his hospital bed. He looked normal, seemed happy, appeared fully lucid. My mom was chatting with him and he was smiling as always…and there it was…a facial tic on his right cheek. He didn’t notice it. He continued smiling as my mom talked, and the tic continued for several moments, worsening, twisting my grandfather’s face into something almost obscene. He couldn’t tell what was happening to him, he just sat there on the bed, twitching. I felt the blood leave my head and everything became quiet and I felt my gorge begin to rise and I turned and fled the hospital and ran out to the car, horrified at what I’d just seen. Was that my grandfather in there? Was it really him? It couldn’t have been. The man I’d known all my life could never look like that man I’d seen sitting on the edge of the hospital bed with his face twitching.

It took several minutes for my stomach to settle. Later, my mom and sisters came out to the car and we left for the farm. And that was the last time I ever saw my grampa alive.

Something had broken inside me. I wasn’t sure what it was. Perhaps a good chunk of my innocence had been shattered beyond repair. Whatever it was, I couldn’t bring myself to visit my grampa after that. Every time my mom would drive to town to see him, either in the hospital, or later in the nursing home, I stayed home. I just. Couldn’t. Do. It. The mental image of my grandfather sitting in that hospital room twitching was burned into my mind and all I could do was try to bury it. So, I went to work doing just that, grabbing my shovel and piling tons of guilt on top of it until I was numb. I mean, that wasn’t my grandfather. Not anymore. My grandfather was the guy who always wore bib-overalls and smelled of coffee and cigarettes. My grandfather was the guy who played the accordion and sang Norwegian songs to us, his big grin so expressive and his blue eyes twinkling. He was the guy whose idea of a cup of coffee was about an inch of coffee and the rest a mixture of honey and condensed milk (so sweet you couldn’t even taste the coffee). He was the guy who talked about fishing all the time and made homemade sinkers in his work shed where he also kept his fishing worm farm. He was the guy who taught me to drive in his old black 1949 Dodge truck, double-pump clutch and all. He was the guy who always had a prank to pull, a laugh to bellow, a grin to share. He was the best guy who ever lived. No, that man in the hospital—and later in the nursing home—was not my grandfather. He was an imposter, some thief who had stolen my grampa’s body for his own and had twisted it out of shape and scared the living daylights out of his teenaged grandson.

My grampa died when I was 21. That was the first time I saw him since that horrible day in the hospital years before. He looked peaceful in his casket. He’d lost a lot of weight and was gaunt, but that was him, that was my grampa. That eldritch imposter had finally returned my grandfather’s body to its rightful owner, and we were burying him. It was hard to look at him, but I did. I had to make sure.

I carried around this guilt for years. I loved my grampa dearly, but I had betrayed him. I had left him when he was the most vulnerable, and I hated myself for it. But what could I do? He was gone now and there was no way to tearfully apologize to him for having abandoned him. Toward the very end, he didn’t recognize anyone, so if I’d gone to see him he wouldn’t have known who I was anyway, I told myself in an attempt to quiet that guilt. But guilt is a funny thing. When it get to yammering, nothing will shut it up.

Well, almost nothing.

In 2012, after having experienced a 20-year fallow period in my writing, I suddenly sat down one night at my computer and began writing again. Poetry this time, unlike in the past when I’d focused on short fiction, back when I was actively submitting my work to publishers and racking up rejection slips. That night was apparently the night my long-absent muse shat on me. For the next month or so, I wrote poetry, piece after piece, and among those pieces were three poems about my grandfather. It was time. Time to deal with years of guilt with regards to the Greatest Grampa Who Ever Lived. The words flowed like tears I’d long-needed to cry but never had been able to. I realized I’d finally found a way to deal with the guilt I’d carried for so long. It hurt, but I was able to honor my grandfather in writing, and it helped more than I could ever have imagined. I recall reading those three poems with my vision blurred with tears from all the memories they evoked. I remembered my old Super-8 film of my grampa smiling and talking to me—silent film, all five seconds of it—and it struck me that he was still there and always would be, no matter where I was or what I was experiencing in my life. All I had to do is close my eyes and remember.

Dementia took my grandfather away. The world is a lesser place without him. And if dementia could fell my grampa, it could take down anyone, including me. And so I worry. I worry that I may suffer the same fate as my grandfather, a fate no one should have to endure, a fate that robbed him of his very essence and robbed the rest of us of the most wonderful man imaginable.

I understand that it’s not a done deal. There’s no guarantee it will happen to me. It skipped my mom, who was lucid and still herself until the end at age 75. But I keep my eyes open for any early signs just in case. I know mine isn’t the only family that has battled this monster. My love goes out to of all those who have gone through this. It’s painful, and the guilt can be crushing, but we will remember those loved ones as they were, and we can honor them in our own unique ways.

“Burden of Proof: The Damning Consequences of Skepticism”

On September 5, 2021November 11, 2021 By Mike U.In deafness, Disability12 Comments

Deafness has been called the “invisible disability” for good reason. Unlike other disabilities which manifest themselves visually, deafness employs stealth and hides in the shadows, undetected. We see a person in a wheelchair and we think of paralysis or perhaps some type of nerve or muscular pathology. We observe a person wearing dark glasses and tapping the ground before him with a white cane (or perhaps accompanied by a guide dog) and we think of blindness. A person sporting a prosthetic limb? An amputee, of course. But what about that guy sitting alone at the little table in the dim corner of the bistro, idly stirring a coffee as he peruses some random magazine? You know, the fellow who looks like everyone else in the place: nondescript, unremarkable in every way, minding his own business. This guy is normal, we may think, nothing out of place, nothing missing, just some anonymous dude with a magazine and an orange mocha frappuccino. The term “disability” never enters our minds. How could this guy be disabled? He looks normal, healthy, well-kept, sane, harmless… It’s clear that, without even speaking with this man, we’ve developed a bias, a first impression that tells us everything we think we need to know about him. Unfortunately for him, first impressions are difficult to change and can lead to people refusing to accept that he is anything other than what they’ve pegged him to be in their minds.

I’ve been dealing with progressive hearing loss for thirty-nine years. Because I have late-onset adult hearing loss, I speak normally. I don’t wear hearing aids (they don’t help my hearing loss) or a cochlear implant (I’m not an ideal candidate due to the duration of my deafness and its classification as an auditory processing problem). I have no antiquated ear trumpets protruding from my skull or any sort of arcane apparatus working its obscure sorcery on my rather bat-like jug handles. I’m just a random-looking dude. I don’t appear deaf, so by some obtuse and sketchy logic, this means I’m not deaf to the casual observer, and the burden of proof lies upon me to convince the world otherwise.

I have been accused of lying about my deafness by several people over the years, from strangers to family members to so-called medical professionals hired by SSA to test me during my disability claim years ago. My own father went to his grave accusing me of faking my deafness. I’ve had people give me that look that says, “Nah, huh-uh, you’re not deaf” when they hear me speak normally. I’ve had an ASL teacher mock me when I submitted a paper titled “Deafness and Depression,” invaliding my life’s experience with these two paralyzing issues with her curt and dismissive “What do YOU know about deafness and depression?” I’ve had employers who refused to believe I was deaf because I didn’t look deaf and because my normal speech pattern didn’t jibe with their own ignorant notion of how a deaf person should behave. These people and others who cast doubt on my deafness have no idea of the damage they’ve done to me. And as much as I like to write—as verbose as I can be on paper or on screen—I find it exceedingly difficult to articulate the rage and frustration I feel when I’m accused of faking my deafness. The burden of proof weighs heavily on my shoulders, and as the years have gone by, I’ve grown exhausted of having to explain myself to everyone I meet, only to see doubt in the eyes of some.

Of all the people who have cast aspersions with regards to my deafness, one stands head and shoulders above the rest. I’ll call him Dr. H.

In the mid-’80s, my hearing loss had become bad enough that I had begun visiting a few audiologists in the area to see what was going on and what I could do about. Dr. H. had an office in town where he practiced as a hearing specialist. He seemed like a normal fellow—he appeared to know what he was doing and his demeanor was what you’d expect of a medical professional. He treated me respectfully and I trusted him.

Testing produced disappointing results, so he sat my parents and me down and emphasized the point that my hearing was awful enough to warrant a set of $1,100 hearing aids, saying they should do the trick, I’d be able to hear a lot better, etc. You know, the usual spiel you get from guys who are in the business of trying to sell hearing aids. So, my folks paid for the aids and I wore them for quite awhile, always anticipating the moment I’d be able to tell a difference in my ability to hear, hopefully and patiently (and sometimes impatiently) waiting for that breakthrough Dr. H. had spoken about. It never arrived. The devices did what hearing aids are supposed to do–amplify sounds—but my hearing deficit was not affected by louder sounds. I still had trouble understanding speech, which was the reason my parents had spent such an exorbitant amount on them. Dr. H.’s advice was “Just keep wearing them.” So I did, and my speech discrimination continued to worsen.

Eventually, it became clear the hearing aids were not helping and I put them away. I felt terrible that my folks had spent so much money on them, only to have them not achieve what Dr. H. had promised. I had tried, and failed. It was frustrating and worrisome to realize hearing aids—freaking hearing aids—had not made a difference. I was unsure what the future held, but I felt devastated and ended up internalizing this defeat, and it transformed into some weird sort of guilt, as if I were at fault for my deafness and for the hearing aids’ failure to fix it.

Fast-forward to 1991. After a few more years of deteriorating hearing, a horrible bout of strep throat that took away a big chunk of it, and another fruitless attempt with hearing aids, things had gotten to the point where the doctors I was seeing recommended I apply for SSDI. This was the advice of four different audiology specialists. Thus began my three-and-a-half year ordeal to prove I was suffering from severe hearing loss.

If any of you reading this has ever filed for disability, perhaps you understand all the hoops (flaming ones included) SSA forces SSDI claimants to jump through to successfully navigate a disability claim. I was told at the start by people who had been through this that it would take about three years, a couple-three rejections and appeals, and a lot of humiliation as I’d be met with stiff resistance at every turn. The burden of proof was on me, making me a target for what would turn out to be some very suspicious and outright unethical behavior on the part of the people assigned by SSA to test me.

I did all I was asked. I filled out every form, attended all appointments, did my absolute best in every test I was given, and was rejected. This was to be expected, people told me. Don’t give up, independent doctors told me. I appealed the rejection and started all over again.

During this time, I was seeing other specialists not assigned to test me by SSA in order to get an objective opinion. Every one of them told me the same thing: I had severe hearing loss in both ears and I should definitely qualify for SSDI. Yet every person who SSA hired to test me pretty much said, “Eh, nothing’s wrong with you,” or “Meh, try hearing aids, your hearing isn’t that bad.” And there was that look again, that look that said, “You don’t look deaf, therefore you can’t be deaf.” It didn’t matter that by that point I’d had two sets of hearing aids (neither of which helped me understand speech better), that I had a bevy of independent doctors who had agreed that my hearing loss was severe enough to qualify me for SSDI, or that I was being completely honest and transparent throughout the entire ordeal. SSA paid them to try to discourage me so I’d drop my claim.

Anyone who’s been through this process will likely tell of a similar experience. It’s a means of attempting to reduce the number of SSDI claimants so SSA won’t have to pay out as much, and it is a highly politicized issue and has been for decades. One side falsely claims rampant welfare fraud and wants to cut or totally destroy social safety net programs that keep people alive, the other side wants to increase funding and expand the social safety net because people’s lives depend upon it, and the people caught in the middle—people like me—are the ones who suffer when the bad guys win and programs are defunded or privatized or eliminated just to “own” the other side.

By this point I fully understood what was going on. I was rejected a second time and I refused to give up or give in because I was telling the truth and the truth matters and there was no way in hell I was going to quit. Call it self-righteous anger, call it undying determination, call it fighting to the end for what’s right…call it what you will, but I refused to quit. I fired off a second impassioned appeal letter and began the process a third time. By now, I was sure SSA was sick and tired of me, but I felt as though I were taking on some faceless, soulless thing and I would fight to the end.

It was now 1994. I had retained the services of an SSDI attorney—a crucial step for anyone filing an SSDI claim—and as my attorney set about her work to prepare my claim, I was once again forced to run the gauntlet of audiological testing. And wouldn’t you know? There was good ol’ Dr. H., scheduled to test me at his new office in another town. I didn’t know if he remembered me—I doubted it because it had been years since he’d sold me my first set of hearing aids—but my memory of him had been a decent one and I figured he’d be fair despite the unethical behavior of all the other SSA-hired people who’d tested me up until that point.

The visit with Dr. H. began as any normal visit would: a brief discussion of what was going on, why I was there, and then the basic beep-tests and word discrimination tests. After two rejections by SSA , I expected Dr. H. to repeat the same script the others had spoken, something along the lines of “Bleh, your hearing’s not bad enough, go away, don’t bother me.” Boy, was in for a surprise.

I was sitting in the examination room when Dr. H. returned. He sat down opposite to me, looked me in the eye and said, “I think you’re lying.” I wasn’t sure I heard him correctly so I asked him to repeat. He said, “I think you’re lying about your hearing. I think you’re trying to defraud the government and that you’re taking advantage of your attorney.” (I had to have him repeat this a couple of times to make sure I was actually hearing correctly.) I was stunned. I was frozen. The room was completely silent as the two of us sat there looking at one another. My mind had gone blank, and all I could sense was this feeling of…rage…building up inside me. This abject rage at being called a liar to my face, of being accused of trying to defraud SSA. I had spent three years dutifully following all of SSA’s rules and regulations, jumping through every fiery hoop they placed in my way, handing in every piece of paperwork on time and attending every testing appointment. I had been honest the entire time. I had not lied about anything at any point. And here was this man, the very same man who had claimed my hearing loss was so severe only a few years earlier that I needed a set of hearing aids, now saying there was nothing wrong with me, that I was lying and committing a crime. After a few moments, all I could think of to say was, “…You’ll hear from my lawyer…” and I walked out of his office, shaking with anger and humiliation.

It happened that my DVR counselor had her office just half a block down the street, so I went there and told her what had just taken place. She had been working with me in her role as a Division of Vocational Rehabilitation counselor for more than a year at that point and she knew me pretty well. She was shocked and dumbfounded that this guy would accuse me of lying to defraud the government. She immediately got on the phone and called his office and asked him what was going on, saying she’d known me for a year and a half and she knew I would never do anything like he was accusing me of doing. I sat there in her office, still shaking with anger, and feeling a weird sort of detachment from reality, almost the cliché of sort of floating outside of my body and looking down at what was taking place in her office as she spoke to this guy.

She paused and told me that he thought I was lying because my test scores were “abnormal” and were different than what he thought they “should be.” She said he mentioned another test he could give me if I were willing to go back, a test that couldn’t be faked: an auditory brainstem response test, or electrocochleography test. The difference between how this test and the other basic hearing tests are administered was that the patient needn’t make any responses at all. Electrodes would be placed in various locations on the head, and sounds would be fed through headphones. A patient needed only to relax until the test was over.

I told my DVR counselor there was no way I was going back to that quack after he’d accused me of lying. (Yeah, quack was the best I could come up with, I was so mad.) Thank goodness she convinced me to do it anyway. She calmed me down and told me it would be the best way to prove I was telling the truth. That fighting spirit was still alive in me, apparently, because that’s all it took for me to agree to do it. Being called a liar is a big thing, and this guy was going to pay for it.

A couple of days later I was back at Dr. H.’s office. He gave me that look, as if to say, you’re going down, but I was there to prove him wrong. He and his female assistant prepped me for the test, and a few moments later it was underway with its strange, loud clicking filling my ears. I sat there for forty-five minutes doing nothing, just staring at the floor, the wall, anywhere but at Dr. H. I recall wondering why he hadn’t performed this test prior to accusing me of lying if indeed it was the definitive test that would prove whether I was faking my deafness. But these people are paid by SSA to discourage SSDI claimants so they’ll drop their disability claims. I figured he wasn’t looking for the truth after all, he was just doing what he’d been paid to do.

The test ended and I was escorted to the waiting room out front and told to wait. After a time, the female assistant walked in and spoke to me. And oh boy, did she have a strange look on her face. She said my test results for the electrocochleography test had been extremely abnormal, which proved I had told the truth and hadn’t been deceptive in any way. She looked at me and apologized that they had been so unprofessional as to call me a liar. Then she said their office was going to recommend that I have further testing in Denver—paid for by SSA—by the nation’s top audiological specialist in an attempt to finally get to the bottom of what was wrong with my hearing. She apologized again and that was it. I felt vindicated—truth had won the day—and while I was ecstatic that Dr. H. had been proven wrong—indeed, he’d been proven to be the liar—I was disgusted that he hadn’t had the stones to apologize to me himself instead of being a coward and sending his female assistant to make the apology. I left that office relieved, with new resolve to continue my battle to win my SSDI claim.

The rest, as they say, is history. Testing in Denver verified the severity of my hearing loss and revealed that it was an auditory processing problem. I was told hearing aids wouldn’t help (personal experience had proven this), implant surgery would do nothing to improve my condition, it was progressive and would continue to worsen over time, and there was essentially nothing that could be done. The doctor advised me to stay away from loud noises and avoid any illness that could infect my ears such as strep throat (personal experience had proven this, too), and he apologized profusely that there was nothing he or anyone else could do to help me. It was his assessment that resulted in my winning my SSDI case (the case wasn’t just about hearing loss—it also included major depression and sleep problems related to PTSD). I received my SSDI award letter on my birthday in January of 1995. About two months later, I read in the local newspaper that Dr. H. had quit his practice and retired.

I’ve often thought that perhaps his unethical treatment of me had a lot to do with his retirement. I mean, surely I wasn’t the only SSDI claimant he’d been hired by SSA to discourage. How many others like me had he baselessly accused of lying because he was paid to do so? How many others had given up because of his unscrupulous behavior? How many times had he gotten away with this? And had he even remembered that he’d sold me my first set of hearing aids because he’d proclaimed my hearing loss was so severe as to merit forking over $1,100 for them? Perhaps it sounds bitter of me to say this, but good riddance. He should never have been practicing at all.

Even now, decades later, I still dread interacting with people, particularly meeting folks for the first time. There’s always the inevitable explaining I’m required to do, that seemingly endless and frustrating summary of my deafness (thus immediately and forever labeling myself as “the deaf guy”), and that occasional look when someone has doubts regarding my deafness. And then I feel that old defensiveness bubbling up to the surface inside me and it’s such a raw feeling, one of injustice and powerlessness and anger, and I remember Dr. H. and my dad and everyone else who’s doubted me over the years. I realize that if someone believes I’m lying about my deafness, there’s not much I can to do change his or her mind. I’ve seen that look enough times to know by now. People see what they want to see, even if it’s not there. To some, if a person doesn’t look deaf, he can’t be deaf so he must be lying.

Skepticism has consequences. A bit of skepticism is healthy, but too much can damage lives. It costs very little to give people the benefit of the doubt. You have no way of knowing what’s going on in someone else’s life, so perhaps set your skepticism aside and be open-minded and get to know a person before passing judgment. And that guy in the bistro in the opening paragraph? Yeah, him. He’s deaf, but he’s a good guy. Get to know him, will you? You won’t regret it.

“The Obligatory Deaf Dos and Don’ts Post”

On August 26, 2021November 11, 2021 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 August 4, 2021November 11, 2021 By Mike U.In deafness7 Comments

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 to 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 July 29, 2021November 11, 2021 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.

“The Deaf Guy”

On July 23, 2021November 11, 2021 By Mike U.In deafnessLeave a comment

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 July 20, 2021January 12, 2022 By Mike U.In deafness21 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 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.

Silent Pariah

Category: deafness