After my cochlear implant surgery was a success and I returned to the world of (more or less) normal hearing, I had a stunning revelation. In the months before my surgery, when my hearing loss had progressed to “profound,” I had been living with a serious disability. But even as I struggled daily with hearing aids that barely helped and as I suffered from growing social isolation in spite of my constantly evolving coping capabilities, I never considered myself to be living with a “disability.” Now I realize I was.
It got me thinking about how people tend to make the best of bad situations, and how denial of the consequences of a loss is one way of enabling you to cope with that loss. And even though I now realize I had a real disability, I still find it impossible to think of myself in any way as “unable.” Rather I feel my disability “enabled” me to learn to deal with all kinds of adversity in creative, enabling ways.
With progressive reduction in your hearing, every step of your decline is yet another loss, and you must find yet another way of coping with that loss so you can continue to get by. I was always realistic about the level and extent of my progressive hearing loss at each stage of its decline. And with each progressive loss, I looked at a new set of disadvantages I’d have to overcome to continue to be able to do what I’d done before rather than accept the idea I wouldn’t be able to do some of those things at all.
I realize now I was in denial of the fact that at some point along the way, my collection of disadvantages turned into a true disability. But I think that denial was a critical element of my ability to cope, because it enabled me to simply refuse to let it get me down.
From the time I first started experiencing mild hearing loss in my late forties, I realized it was a potential disadvantage, especially at work. When I was negotiating deals and didn’t know if the other parties said “15 percent” or “50 percent,” I realized I’d be in trouble if I didn’t use my hearing aids. But when I got the hearing aids, they helped me deal very well with group meetings, conference calls, speakerphones, and business dinners and social gatherings. At times I realized my hearing aids were actually giving me an advantage over other executives my age who couldn’t hear well in certain situations but who were too vain or unaware to get help for their hearing loss.
I realized hearing loss could be a disadvantage in family and social situations as well. When I couldn’t hear my kids in the back seat of the car, participate in dinner party chatter, or enjoy going out to the movies, I started to experience the social isolation that comes with hearing loss. Again, hearing aids saved the day — for a while.
Bus shortly before I turned 50, I suffered a bout of sudden, severe hearing loss, and I quickly discovered that even with the best hearing aids, I would be permanently “hearing disadvantaged.” I needed to rely on speechreading skills, I had to use as much assistive technology as I could find, I started badgering my local movie theater to get captioning installed, I found work colleagues who would help me navigate the problems I encountered when I couldn’t hear well enough to get assignments done on my own, I managed the frustration of being lost in many if not most conversations with family and friends, and I started employing a thousand other coping strategies. And even with all that coping, I was acutely aware I was at an often serious disadvantage in nearly all my daily encounters at work and at home because of my hearing loss.
But I never regarded that disadvantage as a “disability.” Even when I was clearly unable to do certain things usually associated with a healthy and productive life — which I guess is one definition of a disability — I never regarded my hearing loss as anything more than a disadvantage that had to be overcome. And even as I dealt with a progression of more serious disadvantages, I tended not to think about the growing number of difficulties I encountered. Instead I just doubled down on the time and energy I spent figuring out new ways to manage a deteriorating situation. I just forged ahead.
And I’m still unsure at what point my hearing disadvantage actually turned into a true hearing disability. Maybe it was as early as the first year of my severe hearing loss, when I saw my consulting income decline by 50 percent. Or maybe it wasn’t until those last few months after I’d lost all my hearing, when I started doing desperate Google searches on career changes for late deafened adults. I do know that at many points along the way I found I simply was unable to do many things I felt I needed to do. And I realize now that at some point all those hearing related impediments combined amounted to a true disability.
But I believe if I’d started thinking about myself as having a disability rather than simply disadvantaged in a growing number of situations, I would have been more likely to throw up my hands and give up. And given the fact that researchers are discovering that older folks who stop trying to cope with their hearing loss are prone to severe social isolation and are at much greater risk for dementia, I think my refusal to acknowledge that my collection of disadvantages had turned into a “disability” may have been a relatively healthy coping mechanism.
I’m thinking about all this now because of the success I’ve had with my cochlear implant. At first I felt like I’d returned to the world of completely normal hearing. I was stunned with my ability to hear all the normal sounds, to understand speech, to use the phone, to participate in group meetings and conference calls at work, to hear much of what was on TV without relying 100 percent on the closed captioning, to order something more complex than a tall black coffee at Starbucks without getting lost in questions from the barista that I would never be able understand, and to once again enjoy some kibitzing with people behind the cash registers at grocery stores.
But over time I’ve realized that, with only one cochlear implant, I’m living with all the disadvantages that other single-sided deaf people must deal with. Localizing sound is difficult, understanding speech in noise is still more difficult than if I could hear with both ears, I continue to rely on captioning with the TV and at movie theaters, I worry about being able to use the phone as successfully as I’d like when there’s a less-than-perfect connection, and I continue to use many of the coping mechanisms I’d built up over the years, including having a dozen different ways of asking people to repeat themselves.
Compared to my previous status as a profoundly deaf person, my cochlear implant has returned me to the world of normal hearing. But in that world of normal hearing I realize I still have to contend with a number of disadvantages. My disadvantages now are less than when I suffered severe hearing loss and struggled mightily every day to cope even with super-power hearing aids. But my disadvantages are greater than when I had mild hearing loss that hearing aids dealt with very well. Right now, I’m like other people who start to realize that single-sided deafness creates more disadvantages and stress than they want to live with with.
So I feel I’m still “hearing disadvantaged” but now longer have a “hearing disability” (at least for the 18 hours a day when I wear my implant processor — at night, when I don’t wear the processor, I’m stone deaf and couldn’t hear a fire engine or anything else if my house were burning down, which I guess still counts as a hearing disability…)
I’ve spent a lot of time in this post on the semantics of hearing loss. Not being able to hear makes you appreciate all the more how important are words and their specific meanings. And from my years of work in journalism in marketing, I believe words truly do matter.
In this case, the word “disability” is a two-edged sword. There’s often a stigma that goes along with the word, because it can isolate people by implying they can’t function normally in society. On the other hand, when the government and society acknowledge the fact that people with disabilities are in fact real people with all the same rights as all other citizens, you get things like the Americans with Disabilities Act, which created a revolution in how society regards people with disadvantages and opened up new worlds of opportunity to them.
But for someone living with a disability, the word becomes something more personal, and the semantics become important. Do I take on my “disability” as a challenge? Do I pat myself on the back every day for getting up and successfully coping with my “disability” in a very difficult world?
Maybe not. Maybe, instead, I think of my disability as a collection of “disadvantages.” Maybe I get up every day looking for ways to do overcome those disadvantages, to do things I was unable to do yesterday, and thereby turn myself into someone with advantages:
- When I use the real-time captioning service with my phone to participate in a call I hadn’t thought I would be able to make, I’m overcoming my disadvantage and denying my disability.
- When I show up at a meeting having done twice as much research as anyone in the room, and when I stay ahead of the conversation even when I can’t understand everything that’s being said, I’m able to do something my hearing loss says I shouldn’t be able to do. And through my hard work and coping, maybe I’ve even gained an advantage others in the room don’t have.
- When I take the time at a family gathering to have ten quiet individual conversations to catch up with every person there rather than wring my hands when I can’t hear what the ten people are saying at the dinner table, I have a satisfying social experience I might have been unable to experience if I hadn’t tried.
Through it all, I’m not thinking of myself as a person with a disability, or acting like someone who can’t do certain things. I’m thinking of myself as a person who looks for every advantage he can get, even when he’s got to deal with a number of disadvantages. So, for my daily coping, “disadvantage” works better than “disability.”
Granted, outright denial of a disability can be harmful. But maybe denying the consequences of a disability — and working to overcome many of those consequences successfully every day — can be a healthy thing after all. And when you do, maybe thinking of yourself as simply disadvantaged, not as a person with a disability — even if you have one — is perfectly okay.