General Hearing Loss information

There are now over thirty million people (your statistics may vary by a million or two) in America with hearing loss. This is one in ten people, and it becomes one in four if you're over 60. How does that compare with some other long-range diseases and disabilities?

Alzheimer's, four and a half million
Diabetes, seventeen million (which is a guess because they include an undiagnosed number in there). The KNOWN number is eleven million.
Parkinson's, one million
Breast Cancer, two million survivors at present time, and just over 200,000 new cases every year

Okay, you won't die from a hearing loss, unless you're run over by a bus because you didn't hear it coming.

But there ARE more people with hearing losses than with most other diseases or disabilities.

Why then is so little known about hearing loss, so little written and spoken about hearing loss, and so little public accommodation made for hearing loss?

It's called the silent disability or invisible disability for several reasons.

Usually when you first meet a person who has difficulty hearing, you don't see anything unusual--no wheelchair, no white cane, no trembling hands. You may never even tumble to the hearing loss if you only have a brief conversation. If the conversation is prolonged, you might notice that the person speaks louder than normal, or asks you to repeat a lot, or the person might give inappropriate responses to what you say, or if you turn your head away, might not even realize you are speaking.
The person who has a hearing loss often will try to hide the fact. Some hate to admit it, or only say they have a small problem hearing sometimes. (Their significant others will generally tell you that they have a LARGE problem hearing a lot of the time.) This person refuses to see a doctor or attempt to learn how to cope with this issue.
Most people with a beginning hearing loss deny it. This can last for years, even until death, even as the loss progresses (which it most always does). So, these people are silent about their disability, which makes them part of the problem instead of the wonderful possibility of being part of the solution.

There are now available to us many different ways to help cope with a hearing loss:

Hearing aids: Although not perfect, they can help. The problem is that lots of folks think that if they put on hearing aids, it's just like putting on a pair of glasses--they will immediately hear better. Unfortunately, this is not true. They have to adjust to hearing sounds they may not have heard for a long time and to identifying them. They have to adjust to things being loud to them now, which can be irritating. They may have problems with the fit of the hearing aids and have to go back for several adjustments. The sound quality itself may need several adjustments. It's not fun to have to go back to get these new things to work properly. But that is the reality.
Telecoils. These are tiny coils that can be put in most hearing aids, except the very smallest ones. When the hearing aid is set to telecoil (sometimes also called telephone) setting, most often, the person can hear better on the telephone. The telecoil can also be used in conjunction with:
Assisted Listening Devices (ALDs): These are extra devices such as FM or infrared receivers, cell phones, whole rooms looped with a special wire so the telecoil can function, or just a chair in the living room looped so the person can hear the television better. Some of these devices can also be used without telecoils--with ear buds or headsets, for example, but the very best way is to have a telecoil in each hearing aid. With just the touch to the aid or an aid's remote control, the person can switch to telecoil mode and hear things much more clearly.
Special telephones for the Hard of Hearing (HOH) and deaf: I am not an expert on these, but there are places on the web that sell them and most Deaf Centers around the country have displays where you can try them out.
Captioning, closed or open: Most everyone is familiar with closed captioning. Closed means it has to be turned on to work. All newer TV sets that are over thirteen inches are required to have closed captioning. Open captioning means the captioning is always on. An example would be foreign films, although this is usually called subtitles. Certain museums and other venues may have films open captioned--perhaps a red bar (many banks and auto dealers use red bar signs, which usually have black backgrounds and red scrolling letters, outside for advertising or to show the time and temperature, for example) scrolling next to it with the spoken words on there. Some films (very few) are now open captioned. They are usually shown at special times (off-peak, of course), and few people know about them. Most theaters don't even advertise them. Meetings, conferences, and other get-togethers can be captioned using Computer Assisted Real Time Captioning (CART). With this system, a captioner types into a court recording machine (or computer), usually at over 200/wpm. The words are projected onto a screen or television or monitor, and people at the venue can then read what is said.
American Sign Language (ASL). Used by very few in the hard of hearing population, unless they progress into total deafness. Usually the only proficient folks are those who learned as children. I do not have enough knowledge about ASL and Deaf Culture to discuss it here. There are many places on the web, many books and magazines and much other information devoted to it out there for the interested person to search out.

And that, folks, is just the tip of the iceberg. See the pages of links to websites devoted to hearing loss.

Here are the steps a person needs to take to cope with a hearing loss.

Acceptance. One of the hardest steps of all, but once accepted, then something can be done about the loss. Before acceptance, things can get pretty rough for the person trying to cope with a hearing loss but in denial. Before acceptance may come the other four stages of grief--the denial at first; the anger, especially; the sadness, certainly; and perhaps the bargaining with self or a higher being.
Action. The person should go to a specialist, either an Ear, Nose and Throat doctor, or to an otolaryrngologist, to be sure it's not excess wax or a tumor or any other, fixable, medical problem. Next, the person has to search out information about hearing and the loss of it. This is important to do BEFORE buying hearing aids or any other device promising to "fix" the problem. Hearing aids are very expensive, or can be. They need to be individually fitted, both for size and for the hearing loss itself. The educated consumer is most likely going to be the most satisfied consumer. Then, the person should see a qualified audiologist and probably purchase hearing aids, the best they can afford, being sure to check to see if their employer has contracted with any health insurance for help in purchasing hearing aids. If not, the person should lobby the employer for this benefit. Federal law gives the consumer thirty days to try out a pair of hearing aids before agreeing to purchase them. Each person should be sure to take the thirty days, and try several pair if need be. Also, they should talk this over with the audiologist so both understand if there will be any charges for molds and other incidentals, even if the individual decides not to purchase aids.
Adjustment. Probably most difficult of all. The hearing aids will be strange at first. Most people don't like then in the beginning, although some fall in love with them, appreciating the sounds they have not heard in a long, long time such as the leaves rustling in the trees, the sounds of waves lapping at the beach, the birdsong. Others cannot stand to hear the refrigerator cycle on and off, the sounds of their own chewing, the dogs barking, the children fussing and screaming. Attitude has something to do with this, but not everything. Some hearing aids make sounds sound harsh. If so, the person should see if they can be adjusted. The longer the individual has waited to get aids, the longer it will take to adjust because the brain has to sort out all these new sounds, remember them, and then learn to ignore the unimportant ones all over again. (And the new refrigerator probably sounds a lot different from the one your mother had.)

Many hearing aids today come with multiple "programs," just like your television. You can have programs to block out background noise (highly recommended) for music listening, for using the telephone both muting all noise around you or another setting for being able to hear both on the phone and those around you. Some aids automatically shift from shutting out background noise to the regular setting. Some people like this, some don't. But it takes time to try out all the settings (and remember those thirty days of trial--be sure to check out all the settings several times).

Most people don't know any of this. Especially about the telecoils. I cannot stress enough how important they are.
Attitude. Of course, your attitude has to be positive. Yes, you may disappointed that the aids don't totally fix your hearing loss. You may feel life is unfair (it is). You may be unhappy that you can no longer really enjoy large groups or parties, that movies and TV are impossible unless captioned, ditto meetings and conferences. People around you may not understand at all what you are going through (they probably won't). You may be tempted to draw into yourself, to shut life out, as your body (or at least your ears) seems to want you to do. You WILL get tired of asking for repeats, for misunderstandings, for asking for accommodations, from loved ones' and friends' indifference or outright horror that you are "handicapped" in this way. You will also get tired of educating the rest of the world about hearing loss and how it affects you and what they need to do so you can understand them better (speak right to your face without covering their mouths, speak clearly but not so loudly that the sound is distorted, repeat as needed). But your attitude will help you deal with all this. You have to let go of those who will not help you hear. They will be too difficult and painful to be around. You will have to rearrange seating at get-togethers, ask for assistive devices when you attend the theater and movies, insist the captioning is on the TV when you want to watch it, etc., etc. I cannot possibly list all you will be required to do just to get through each day and each situation. A sense of humor, a pleasant smile and tone of voice will help with most of this. You will have down days. Accept that, do what you need to do to get up again. Realize that after being with a group of people, you will be more tired than the ones who could hear. Straining to hear is a strain on the whole body and mind. You will probably need more sleep than those who hear normally, especially if you work where there are lots of people talking, or if you go to a party that day, for example.

Also remember your loved ones. Your attitude, acceptance and determination to do the most you can to accommodate your hearing loss will be a huge help to them as well. They have a double burden--watching you go through the painful process of coping with this loss, plus coping with their own frustration at the new lack of spontaneity in the relationship, the new weight of helping you out--perhaps making phone calls for you, translating what others say when you are out, etc. Being the hearing person is almost, and in some cases totally, equal to the frustration of being the one suffering the hearing loss. The only difference is that the hearing person can be out and about without the HOH one and forget all about it. The HOH person, of course, never has this option.
Asking for Accommodations. I've touched on this already, but it's a whole subject unto itself, and a tricky one. Under the Americans with Disability Act (ADA), you are entitled to many, many accommodations. Most of the time, however, you have to ask for them. This is unlike most other people who are disabled--things are in place for them such as ramps, parking, places to sit with wheelchairs, etc. Because the hearing disabled can require more than one accommodation, or different accommodations depending on need, they have to ask for them individually. There are four main types:

Assisted Listening Devices and scripts handed out at theaters and tours and other venues, captioning, and sign language interpreters. You have to know what works for you and what to ask for when you notify a place that you need accommodating. And you will most likely have to give them up to two weeks to get it in place. Some special places you will especially want to ask for accommodations are: If you are told to perform jury duty; attending important events in your children's or other important people's lives such as graduations, weddings, etc.; public meetings; meetings at work; conferences and conventions; while traveling. I am sure there are others that might come up. If you can use an assistive device with your hearing aids, this is the easiest thing to find. Most theaters hand them out now, and you can also buy one yourself and have it with you to use on tours and at meetings. For many, though, especially in noisy places, these devices do not allow them to catch most of what is said. They will need either written material/scripts or actual captioning. This means the venue has to hire a captioner. It is best if YOU know the phone numbers of a favorite two or three for the people to call and make arrangements with. You should send them a letter telling them what you require and giving them the phone numbers of whom to call. If they have never done this before, they may write back and say it is too expensive or they cannot do it. This is not true in almost all cases. The ADA is on your side, and they probably have not called to find out how much it really will cost. Insist that they do this. After you have requested accommodations a couple of times, it will become routine. And you will not believe how many other folks who do not know to ask will thank you if you ask for captioning. The more people who see others using assistive listening devices will probably try them out themselves and learn the benefits.

Remember that all hotels and hospitals are required to have a "kit" which includes flashing lights for the phone and a flasher for when someone knocks at the door, a flashing smoke detector, and a TTY or TTD telephone. They should also have someone turn on the TV captions for you, or if the TV is so old it doesn't have captions, the hotel/hospital should provide a decoder.

The ADA was enacted back in 1990 to give all Americans equal access. If you cannot hear a movie or a speaker, you do not have the same access as hearing folks do. This does not mean you are entitled to some special treatment. This means that you only ask to have equal access.

What all Americans must remember is that the majority will be handicapped in some way during their lifespan. It may not be permanent (a broken foot, for example, resulting in the acquiring of a temporary handicapped parking permit), but each person it happens to will be happy for those who paved the way and made their road easier to travel. If someone only needs a wheelchair for two months, how nice those curb cuts and elevators will seem! Each individual with hearing loss has an opportunity to make it easier for those who come behind them to enjoy life and to have EQUAL ACCESS.
Association. Many people who are HOH don't know another soul in the same boat. Or they know one elderly person perhaps. That's a very lonely feeling. I recommend that the newly HOH join at least one, probably two or more, groups for people with hearing losses. The four best known are:

SAYWHATCLUB:
http://www.saywhatclub.com/
An on-line group of about 400 folks who provide support and encouragement to each other through e-mail. They have a great convention every year and several mini-get-togethers throughout the year in different parts of the country.

SELF-HELP FOR THE HARD OF HEARING (SHHH):
http://hearingloss.org/hearingloss.org-asp/index.html
Large organization focuses on using hearing aids and assistive listening devices to help hard of hearing folks. Also often lobbies government for legislature helpful to HOH population. Very nice magazine comes with membership. They also have a yearly national convention and some regional ones as well.

ASSOCIATION FOR LATE-DEAFENED ADULTS
http://www.alda.org/
"ALDA was formed in Chicago, Illinois in 1987. Most of those that gathered there were total strangers who had never met or talked to another deafened person, yet they found themselves wonderfully comfortable with one another. There was an unspoken feeling of understanding and patience with each other's communication difficulties. The marvelous sense of fellowship lasted and led to more social gatherings and self help support groups, which swiftly evolved into the Association of Late Deafened Adults (ALDA)." Famous for their wonderful conventions.

BEYOND HEARING:
http://www.geocities.com/Heartland/Prairie/4727/bhframe.htm
Beyond Hearing started as a listserver (bhLIST) that supports people with hearing loss. This is the place for anyone interested in hearing loss to share ideas, ask (and answer) questions, or find support from other people who have a hearing loss. Moderated list, focused totally on dealing with hearing loss--no chat.

The first three all have conventions, and I also recommend that you attend as many as you can. The first one will be a real eye-opener. No one will get upset if you ask them to repeat what they said! You will see sign language being used, paper and pencils, and quite a bit of loud talking. Most everyone is friendly. The workshops are educational, and you will get to see all the different kinds of accommodations--captioning, sign language interpreters, assisted listening devices, and spotlights on the speakers for those who lip read. Many folks are actually a bit depressed for a few days after being at a convention because they miss the fun and the ease of communication. If you are shy, simply find a person or two who look friendly and hang out with them. They won't mind, believe me.

As you can see, there is a lot of work to do if you are new to hearing loss. It is a very complicated situation which impacts all facets of a person's life from personal relationships to work relationships to impersonal interacting on a day-to-day basis with the outside world. Phone calls become a challenge. Interacting with strangers becomes stressful. Spontaneity is lost when talking with loved ones.

But it's not an impossible challenge. With education and a strong will, life can still be beautiful. And you'll be amazed at what happens along the way.