FEATURE
When Hearing Loss Enters the Equation
by David Goldstein
Bridgeport, Connecticut

My guide and I are walking through a public building. There seems to be at least two people talking with raised voices. "Sounds like they're in for a fight," my guide says. I know," I agree. Suddenly, bam! I'm hit on the head by a closing door. My guide seems as surprised as I am. "You said you knew the door was opening on your right."

I wonder if I should explain. "I thought you were talking about those people arguing in there." "The room was empty," the guide says. "There was a tel..." but just then the elevator door opens, and the elevator has a fan; the rest of his sentence is drowned out. He probably said television, but it doesn't seem worth asking again.

Situations like this often happen to me as a blind person who also has a hearing impairment. Whether the hearing problem came as part of the original package or has come later, I am finding more and more people with total or partial vision loss mentioning that they wear hearing aids. It's our choice whether we bring it out into the open, but like many other things, the more we understand what works or does not work for us and why, and the more comfortable we are making others aware, it's possible day-to-day interaction with others can be made more enjoyable. In this article, I will show you some of the situations that have come up for me, and I will conclude with some suggestions that might help you in social situations. The best of strategies may not help much if people you're dealing with are in a hurry and are not all that perceptive, but people will try if you have a clear idea of what to ask of them.

I should say that I am not going to make much use of the word "deaf-blind." This article is addressed to people who have enough hearing to get along pretty well in one-on-one or small group activities. Some of us may fall into the category of deaf-blindness, but most won't. I'd rather use "blind/hard of hearing." I do hope this magazine will give more attention to the unique needs of people who are deaf-blind, as well as those of us who have varying degrees of both vision and hearing loss.

Many things I am going to say are similar to what is already in the pages of DIALOGUE when people talk about their vision loss, especially a partial one. People don't know what you can and cannot see, and you yourself may not have a clear idea what to ask, because you don't know what you're missing. A hearing loss will be less conspicuous than diminishing vision. The first sign may not be bumping into walls. So if the feelings about a sensory disability are the same, having problems with two senses may not be all that different, except to double the bewilderment. If you don't see what's happening and don't pick up the sound clues that would normally give a blind person a sense of context, you'll still try to work it out, but you could be a little off.

I'm at a dinner party, and I'm seated across from two people talking about ... what? Oh, Doris Day. Now I don't know much about movies, but I've heard of her and would really like to be a part of the conversation. I venture, "Wasn't she in that scene where...?" Suddenly things seem quieter than they should be. Have I gotten something wrong? I trail off and try to figure out what they're really talking about.

"What about Friday," I hear. Could the word I heard have been Thursday? Oh, maybe they're looking at their calendars and found that Thursday won't work, for whatever it is they want to do. It isn't polite that they should be looking at their calendars at the dinner table, but maybe they aren't. Maybe they're talking about what they did last week on their vacations.

I'm kind of used to living in this world of conversations coming through the fog and using imagination to fill them in. People say, "But why don't you just ask 'What are you talking about?'" I do occasionally, but asking people what they're talking about doesn't necessarily mean I'll hear the answer any better.

In the noise of conversation I can't follow, suddenly a hand is put into mine. Oh, was I just introduced to someone? In the elevator, someone says, "Hello, I'm...." I don't want to say, "Who? Spell it," so I say hello back, and the person gets off the elevator. Someone who is sighted might not get the name either, but he would recognize the face and know that person in the future. To me, everybody is either new, or one of the myriads I've met but have no idea who they are.

Voices are harder to recognize with a hearing impairment, and it may be difficult to tell where people are. Is it the same person talking who introduced himself before, or is it someone else, or do I think it's someone else because the original person moved to another part of the room? How can I be sure of a reaction to what I say, without seeing the expression on someone's face or hearing the inflection or the way breaths are being taken? Is she laughing or crying, absolutely delighted or being negative? Sarcasm is easy to pick up on--right. As a child, I used to think people were angry at me when they were just talking loudly enough to make sure I would hear. 
It's interesting how similar sounding phrases can be completely opposite. There may not be time to ask for clarification. In the car, when one of the stops will be mine, the driver parks, opens the door, and as he gets out, says something and I'm not sure, did he say go ahead, or don't go yet? Did the man in the store say we have many or don't have any?

I tend to hear vowels better than consonants. My name being David, I respond to anything that has a long A. In the background babble of a dining room, I hear a long A with a questioning tone, so naturally, I say yes. Then I wonder why the food I was enjoying is now smothered in gravy. Or maybe I said yes to whatever I thought the question was, and suddenly my plate is gone.

Of course, you have the right to ask people to repeat themselves, but you don't want to do it again and again. I once spent five minutes asking someone what she had said, only to find out that she had come up to say, "How are you doing?" Why make people impatient, when maybe something will make sense if you just wait to see what happens.

There are the jokes where I hear the whole thing except the punch line. It was drowned out by the narrator and audience's laughter. Often things happen or are said that I put on a mental list to ask about later. I find though that I don't remember what I wanted to ask about or the person I'm asking no longer remembers. Usually such things can be lived without. I can still give someone the information she requests even if I have no idea why she said she was an oil burner. Hours later, I realized she said she was an oral learner.

Then there are times when it's not a good idea to wait for something to make sense. It's tempting to respond with "Okay," when someone hurries by saying, "I'll be back, I'm going to...." After all, she said she'd be back. But what if there's an emergency and people ask me where she went? Then there are the times people mention a new term and I think at the time I can let it go. Then I discover I really do need to be able to repeat it and I have no way to refer to it--especially if I don't know how to spell it. There are still words I say that people tell me I'm pronouncing wrong.

Frustration can turn to tension or near panic when you suddenly realize you're not quite in the loop. In families, especially where there are young people and conversations moving quickly, I may suddenly realize I don't know who I'm with and who the others are. People often change their plans, and everybody falls in with the new course of things. It's easy not to realize the plan has changed until you're being taken somewhere that at first appears to be where you're expecting, but then turns out to be different. The tension keeps mounting, if you can't figure out how and when to ask what's happening. Other things that get me panicky are when someone starts talking to me quickly and I haven't figured out who it is or what they're saying. Or, to open a door and be confronted by an idling truck, and not know whether it's safe to move. Often I wonder about going to a bank or store if I don't think I'll be able to hear the person behind the counter. This is especially true if it's not the type of place where people have the time to come out and help.

Sometimes I lose confidence about making an important phone call. I know what the first question is that I want to ask, but am not sure whether I will hear enough to both understand the answer and ask a follow-up question that will provide me the information I need. Or the person may have answered what would be my next follow-up question, and I haven't realized it. Fortunately, there's e-mail--assuming I can understand the e-mail address correctly over the phone. It is usually easier to give someone my e-mail address than to get his. Sometimes if I'm completely lost by the end of the conversation, I'll ask whether the person could send me a summary, or the address I was trying to get.

Constant effort to keep track of what's going on is fatiguing, and the temptation is to "tune out." Sometimes I realize I have done it, and it's more than just not hearing--I've dismissed all talking to being unimportant background noise and have stopped paying attention. And of course, it's human nature that, if asked, "Are you hearing what I'm saying?" to answer, "Yes." I did hear the question, after all.

So how do you avoid making sure you don't let the world run on without you? The first thing is to remember that you do have some importance. People wouldn't be trying to talk to you if they didn't think enough of you to want you to be included. So you owe it to them and yourself to do whatever you can to make the most of the senses you do have. If you stay by yourself too long, people will begin to forget you're there, or at least think you're doing okay and you don't need or want them. It's important to have people in our lives.

Keep in mind that while you may know what works best for you, having a vision impairment as well as a hearing impairment may put you in a position of not knowing enough about the environment, or how to get information, to make the best strategies work. I've heard a lot of blind/hard of hearing people say, "How can I be expected to make conversation if I don't know someone is there?" Somehow, we have to be assertive without being annoying and exhibit curiosity without being demanding.

Most of the strategies I'm going to mention have to be done by the person you're with, but you most likely will be the one who will need to make him or her aware of what you need. People may not make the effort to try to make conversation if you tell them you have a hearing impairment without giving them a suggestion of what will work. So, try to have a solution ready, even if it may not turn out to be the best one. "I have a hearing impairment, but if you...."
  1. Explain succinctly what works best. Do you need someone to speak louder or more slowly? Do you need to direct the speaker to the side of your better ear? If you use an assistive device with a microphone, how will you show your companion how to use it?

  2. Setting. When it's too noisy to hear, don't be afraid to say, "This isn't working. Is there somewhere quieter we can move to?" Suggest places to go that will work for you; for example, offer to meet at the restaurant before or after the peak meal time.

  3. Make sure your companion has your attention. It's from the first words spoken that we know who is talking and the topic. So ask your partner to make sure you are listening when he starts speaking. Usually the best way to get your attention is to say your name, but if that doesn't work, ask him to tap you on the shoulder.

  4. Ask your companion to let you know the topic being discussed and when the conversation changes to a new subject.

  5. Make sure people identify themselves and let you know when they come in and when they are leaving.

  6. If you feel after you have gotten home or off the phone that you have missed something, make a phone call or send an e-mail to confirm. It may be a little embarrassing to realize you don't know whether it was the driver saying he'd pick you up at 1:15, or someone else saying he'd put you down for 150, meaning $150.

  7. Then there's what my mother calls The Goldstein Rule. At the dinner table, one person talks at a time.

  8. If you're having trouble getting a person's name or an unusual word, and spelling doesn't help, try asking the person to use the phonetic code, (alpha, bravo, charlie), or equivalents. If you're having trouble distinguishing yes from no, you could suggest the person say "no" and "yes, yes," which becomes two syllables. It's often a good idea to repeat numbers back to be sure you have them correct.

  9. When attending a meeting, try to arrive early with someone to find a seat near the presenters.

  10. If you use a communication system with a microphone, check ahead of time to see whether the main speaker will wear it, or, if it's going to be a moderated discussion, whether people would be willing to pass it to each other. Again for moderated discussions, ask whether people will say who they are when they begin speaking.
There's a limit to what a blind and hard of hearing person can do on his own, without help. Don't make it worse by thinking you're not trying hard enough, or taking advantage of all you can. Nobody can do everything, and trying to make sense of the world when you can't see or hear well really does cause a lot of fatigue. So be good to yourself. It's okay to avoid an activity you know won't work, even to opt for solitude. Have a good, quiet, fulfilling time, and join the crowd later, refreshed. When you do need help, a lot will depend on the people you're with. Just about anything is possible if you are blessed with understanding friends with common interests. Some people have a knack for knowing just what to do or set things up so you are empowered to be an active participant.

For people who are recognized as being deaf-blind, there are professionals or volunteers who are trained for being such helpers. If it's a matter of helping with communication, we call such a person an interpreter. If it's someone helping with all the other aspects, in the United States we call such a person a Support Service Provider or SSP, and in Canada, the term is intervener. But such people are not to be found on every street corner, and will probably not be available all the times one needs them. Some states are experimenting with legislation that would pay for people to have a certain number of hours with an SSP, and there are a number of organizations that can provide SSP training. The jury is still out on whether someone with the hearing situation I'm describing would qualify for such support, but it surely would help.


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