We have spent most of this blog discussing Asperger’s syndrome and how poorly understood it is. Let’s take a moment to touch briefly on another invisible disability, one that I know firsthand and that affects many others. The subject is hearing loss.
Most people don’t know you have it unless you tell them, or they happen to notice a hearing aid in your ear. For the most part it comes on gradually, but after a while you can’t miss it, whether it happens to you or someone close to you. Every now and then we see a letter in a Dear Abby-type column, complaining that “Grandpa doesn’t hear me when I talk to him and he keeps the TV too loud. He insists there’s nothing wrong.”
Dear Abby, or her equivalent, suggests that Grandpa get his hearing tested. Grandpa, she says, is in denial about his creeping deafness. Grandpa may well be in denial. Most of us don’t like feeling disabled or at a disadvantage, but there comes a time . . .
However, there’s another factor that Dear Abby and Grandpa’s kin may not have taken into consideration. The cost! With the exception of generic types or cheap rip-offs, hearing aids, which have to be elaborately tailored to each ear, can run from several hundred to several thousand dollars apiece. While some private insurers may cover at least part of that, Medicare doesn’t, and Grandpa is probably on a fixed income. That’s the reason I put off dealing with the problem for a long, long time. Okay, some of it was denial, but a very large part was lack of funding. I could do it only when my son Ryo Kiyan, bless his heart, offered to pay half the cost. He got tired of having to repeat everything he said, and at that time, luckily for both of us, he still had his job (see earlier posts). With a hearing loss of 40% in one ear and 60% in the other, I needed two of those tiny acoustical devices—nearly two thousand dollars right there.
They do help but, as the manufacturers point out, a hearing aid does not restore normal hearing. That’s another thing people don’t understand. For the most part, it only amplifies. It’s not much help in making voices clearer or more distinct. If people continue to speak with that proverbial mouthful of mashed potatoes, it will only be a louder mouthful of mashed potatoes. (I am one of the worst offenders in that respect, so who am I to talk?)
Even with those expensive gizmos, I find myself isolated much of the time. At meetings, at church, even at the dinner table, I miss a lot of what’s said. I retreat into my own silent world and think my own thoughts. If I catch a fragment that sounds interesting, I’ll ask about it and get brought up to date, but it’s not the same as participating.
One thing Dear Abby said really got to me. She pointed out that hearing loss can make a person appear clueless. I’ve seen it with other hearing-impaired people and felt it in myself, that blank expression that tries to look comprehending but doesn’t fool anyone. The inappropriate response that shows you didn’t really hear what was said. I first became aware of it many years ago while on a long car trip. My daughter said that several times I made a non sequitur response to somebody’s question or comment. I was mortified. Now, unfortunately, it’s become a habit. Sometimes I’ve simply misheard. At other times, rather than constantly ask to have things repeated, I pretend I heard. Again it doesn’t fool anyone. It only makes me look clueless.
Deafness, even partial deafness, is as hard on others as it is on me. Even those close to me, knowing full well that I have a problem, can’t seem to remember to speak up and enunciate. And most strangers, once apprised of my disability, will make a 10-second effort to be heard, then lapse into their former tones.
I do understand that. People talk at their own comfort level, at what feels right to them, and projecting the voice doesn’t feel right. The problem with hearing loss, and the Asperger’s we talked about in earlier posts, is that people who have never been there don’t know what it’s like. Of course the Asperger problem is a lot more complex, and impossible to describe from inside. Hearing loss is simpler. It can easily be duplicated by stuffing cotton in one’s ears, but few people are motivated to try that. The best we can hope for is that they’ll take our word for it and try to help us along.
Sometimes they won’t. One time, before I had my hearing aids, I went to pick up a pizza that had been ordered by phone. When I asked the girl at the counter how much, she mumbled something inaudible. I explained that I had a hearing problem and asked her to repeat it. She mumbled again in exactly the same low tone.
Me: “I’m sorry, I still didn’t hear you.”
Girl: Same response, same mumble.
We repeated this song and dance more than half a dozen times before the other counter girl intervened and interpreted. If I’d had another type of problem, and had come in with a cane or a seeing eye dog, it would have been obvious. But that’s the way it is with invisible disabilities. They’re so easily overlooked and ignored. I can only hope this blog will make people more aware, and that they’ll thank their lucky stars they can help instead of needing to be helped.