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.