The Communications Challenge

The other day I was introduced to someone and as is usually the case, mentioned early on that I was deaf. His response was, “Oh, you use sign language.” “No,” I said, “I speak!” He was rather taken aback and indicated that surely I was taught how to sign in school. I told him no, I went to a regular school and didn’t pick up any signs for years. Now I know the signs for Merry Christmas, Happy Easter, thank you and sorry, but that’s about it.

This encounter got me thinking about the different ways those of us with hearing loss communicate. If you are unfamiliar with this topic, here is some background.

There are basically three types of communication approaches that are taught to children with hearing loss: verbal (and that can include speech reading or lip reading as well as listening for auditory cues); sign language (in Canada, American Sign Language is used but there are other versions in other countries); and Total Communication, which is a combination of speech and sign.

The communication approach you are taught as a deaf child depends on many factors including current educational thinking, whether you were prelingually deaf (generally deaf before the age of one) or became deaf later in life, the severity of your hearing loss, your family situation and the availability of therapy services in your community.

I first learned about the controversy surrounding communication approaches back in the mid-eighties when I volunteered to sit on the board of a charity providing services to deaf individuals. This organization referred to those of us with hearing loss as either Deaf, deafened or hard of hearing, depending on the severity of the loss and the type of communication we used.

I learned that those advocating sign language don’t always agree with those advocating speech, particularly where children are concerned. Often there are severe camps that attack each other.

In my own case, I was four years old when I lost my hearing and five when the diagnosis was finally confirmed. As the youngest of three children in a family that also included three adults, I learned spoken language very early and by the time I was four was reading books, so it seemed a natural decision for me to attend a regular school.

The educational authorities however, wanted to send me to the school for the deaf where I would learn a combination of sign language and speech and be with other children who were also deaf. At the time, the only specialized school was a three-hour drive away. My parents decided that there would be no way they would send their five-year-old to boarding school and put up a fight to have me enrolled in a regular school, two blocks from our home. I’m very glad they did, but when I tell this story to those who use sign language exclusively, they think I am criticizing them.

I am truly not.

Over the years I have thought a lot about why the feelings regarding this issue are so intense. Parents of deaf children want to communicate with their child and many fear that they won’t be able to do so unless their child learns spoken language. Adults using sign language often had to cope with less than ideal communication situations during their school years and when they discovered sign language, a whole new world opened up for them. Anything that threatens this world, including deaf children who receive cochlear implants, is very scary.

I have always believed that communication in all its forms is a life force. We cannot do without it. Imagine how crucial it must be for those with hearing loss to find ways to communicate with others. Anything we can do to make it easier, whether it is providing a variety of communication options for children, continuing to develop better technical tools for those using speech or simply honouring the communication approach chosen, would be a good thing!


More on music and cochlear implants

Last June I wrote about my success hearing music with my implant. Since that time I have been trying to explain the difference between hearing ‘normal sounding’ musical sounds and hearing these sounds with a cochlear implant, to help others understand the enormity of this milestone.

I had a meeting with my implant rehab therapist earlier this week and she found this great illustration. (see link below) I want to share it with you – both those of you who are implant users and those who might know someone with an implant. I think this is an easy way to understand what we go through trying to hear music with a cochlear implant, especially when the implant’s sounds overpower the sounds from the non-implanted ear.

Some people with cochlear implants never reach the ‘normal’ stage; others get there fairly quickly. It took me almost two years. My brain had to reach back more than 60 years in its auditory memory for these very complex sounds.

I now hear the ‘normal’ sounding music with both my implant and my hearing-aided ear and I am greatly enjoying this newly rediscovered pleasure.

Here is the link. You need to scroll down a bit to find the illustration but I think it is worth it.

The Symphony

Those of you who are regular readers of my blog know about my struggles to hear music. While I could hear simple one-note tunes fairly early on, the more complex music of a symphony was beyond my reach. Until now.

Last week I attended a concert that featured among other pieces, Beethoven’s Piano Concerto No. 3 in C Minor, Op. 37. For those of you unfamiliar with this particular piece, the pianist’s fingers are literally flying over the keys for much of it. I heard almost every note.

There was still a ‘Darth Vaderish’ quality to the lowest registers and I could not pick up the pizzicato of the violins. But the last time I can remember hearing so much, so clearly, would have been at least 40 years ago. And I think the sound is actually clearer now.

It IS the implant that is making the difference here. A couple of times during the concert I took off my cochlear implant processor so I could get a sense of what I was hearing with just my hearing aid alone. It was very little and very soft. When I put the processor back on, the sound not only increased tenfold but it was MUSIC I was hearing in both ears, not noise. This was no fluke.

And how appropriate that my re-introduction to music was a piece by Beethoven.

A few days later, I was still on a high and still processing what happened that evening when I recalled others telling me that they had often been deeply moved by a piece of classical music.

I didn’t know what this meant until that night in June, almost two years after I received this amazing device.

My “cochlear implant expectation check list” is almost complete, so this will likely be the final entry of my cochlear implant journey, .

I still plan to offer thoughts on hearing loss issues from time to time and of course would enjoy hearing and publishing your stories on my blog so please do send them along to me. In the meantime, I am going to go listen to some music!

You can’t always get what you want in life

But to paraphrase that Rolling Stones oldie, you just might find out that you get what you need.

One of the biggest challenges for me is music. I have written in this blog on several occasions about my experiences hearing music with my implant. I could hear the true notes of simple tunes like Twinkle Twinkle Little Star with a week or so of practicing but a complex piece of music sung by a choir still sounds very Darth Vader-like.

So when my audiologist asked if I would like to participate in a research project for music therapy, I jumped at the chance. Here was the opportunity I was waiting for. I would devote 30 minutes every day for a month listening to and trying to identify specific musical sounds. It would be a great success and I would start to enjoy music once again.

Ah. It did not quite happen that way. Let me tell you a bit about the therapy itself. The patterns are atonal so you cannot easily memorize them. And as with all learning, they become more difficult as you go through the sections – nine in all, with several tasks in each one. For each task, you are presented with two patterns, each slightly different and played within a larger selection of music. The test is to identify when you hear one of the two patterns. Seemed easy enough. Not!

For one thing, the notes I heard with my implant did not always correspond with the placement of the notes on the screen. I know music. Before I lost most of my hearing, I played piano and violin and sang in the choir and glee club. I can read music and my brain still retains the musical memory so I know what it should sound like. The patterns in this therapy program appeared as notes on a staff (well, a seven line one) and I could hear in my mind what the sound should be. What I actually heard surprised me. In many cases instead of hearing notes that on the computer screen went up the scale, I heard them going down or vice versa. Very odd.

Eventually after much practice, I was able to hear some of the patterns as they should sound but there were still several that defeated me, so I just listened for what I actually heard rather than what I thought I should hear and was able to move through the sections reasonably quickly.

Then I hit section nine, the final section. Two weeks into my therapy month I hit section nine, task one. At the end of the month I was still on section nine, task one! I just could not get enough correct answers to move forward and the program doesn’t allow you to skip. I made sure I had a glass of wine at the ready each day after I finished the required half-hour. I would check the clock and stop at precisely 30 minutes. It was extremely frustrating, but I finally completed the requisite four weeks this past weekend and on Tuesday went back for my post test.

When I had my initial appointment a month ago, I was told that the researchers were finding that this therapy had a positive side effect.There may be a connection between music and speech. Many participants discovered that their ability to understand speech improved over the month. And my test results showed that as well. My ability to understand bits of speech in a noisy environment almost doubled from the first test a month ago.

A couple of weeks ago I was at a meeting of about 20 people. I was trying out a new personal F/M system that augments the sounds I get from my hearing-aided left ear and decided to sit at the back of the room for this meeting just to see how good the F/M was. I have NEVER sat at the back of the room for anything. I was always placed at the front in school and while I heard the teacher when she faced me, never got the benefit of being one of the ‘disruptive kids’ who had so much more fun in the back. Well, I heard just about everything at this meeting. My new F/M undoubtedly helped but I have a feeling that the dreaded section nine, task one played a key role as well.

I need to understand speech better. The more I understand, the less tired I am and the more I can participate in life. I can still hear some music with my hearing-aided ear even if I can’t get the full power and scope. So while it was a drag at the time, I really did get what I needed from this therapy.

And a PS. I saw a different researcher for my post test. She explained that cochlear implants are designed for speech, not music and music involves a totally different signal. There is rhythm, there are dynamics but most especially there is pitch. Speech generally covers a frequency range from 250 to 8,000 hertz. Music goes up to 16,000 hertz. Clearly there are some missing pieces and this helps to explain why I hear a range of notes that go down when the screen tells me they are going up. The brain is not getting the right signal and cannot accurately process what it hears. The research continues.

Staying Silent About Hearing Loss

I was at a meeting not too long ago to plan a strategic action conference for our church. We were going to place everyone in small discussion groups and wanted to mix them up so people could meet with those they may not know well. We had 17 tables in different rooms around the church, including six in one hall and four in another, neither room conducive to easy hearing. We made plans to accommodate those having mobility challenges to get to rooms that were easily accessible and I wanted to make sure we did the same for those with hearing challenges.

To achieve our goal of bringing people together, we planned to hand out cards with the room designations and I wanted to make sure that those in the congregation who cannot hear well would be able to select a room with just one table. I suggested that those handing out the cards check to see if anyone needed extra assistance with this.

One of the committee members balked at this idea. He said he really wouldn’t have time to ask people if they would prefer a quieter room and said they should announce up front that they were deaf.

I said this likely wouldn’t happen unless they knew you were already familiar with their hearing loss. People with hearing loss often tend to keep this hidden from view. The committee member was a bit annoyed at first but then remembered one of his brother’s girlfriends. He had known her for several months before he realized that she was profoundly deaf and was taken aback that she didn’t feel comfortable sharing this with her boyfriend’s family. In my own history, I really didn’t talk about being deaf until I was in my 30’s and remember being quite embarrassed at being ‘called out’ by a co-worker. It was actually the best thing she could have done for me. Now that my colleagues knew (they had surmised but were never certain as my long hair covered my hearing aids), they could make sure I had what I needed to be comfortable in the workplace.

Why is it that we stay quiet about this? We all know that hearing aid manufacturers use the invisibility of the aid as a major selling factor. But why do we want to hide it ourselves? People do know!

I have written about this before, but it does strike me as odd that of so many disabilities, deafness seems to be one of the hardest to reveal about ourselves. Hiding it or trying to hide it does us no favours so why do we do it?

I actually don’t have any definitive answers. Some will say that hearing loss is associated with age and that’s the reason. Well, so is the loss of 20/20 vision, yet we sport stylish glasses and laugh about trying to see the fine print. A television commercial shows a quartet of women of a certain age at a restaurant with one holding the menu out as far as her arms will let it, giving up and asking for the special of the day. We know she can’t read the menu and we laugh with her. What if she couldn’t hear? How would that work? Would she cup her hand around her ear to try to hear the specials of the day, give up and just point to the first thing she sees on the menu? Would we laugh at this scenario or would we feel a bit of pity and then perhaps be uncomfortable with that feeling?

Why is this? One reason I suspect is that there still aren’t a lot of us. The current estimates are that 10% of the population has hearing loss and this percentage is expected to grow as the baby boomers age. Rock musicians experience hearing loss at earlier ages now because the loudness of the music pretty much kills the hairs in the cochlea. The same applies to kids who listen to a lot of loud music. And the damage is permanent. We really need to start to speak up so that others become more comfortable saying they can’t hear.

I suppose when there are more of ‘us’ than ‘them’ we will be more comfortable bringing this topic out in the open. In the meantime, let’s not stay silent. Let’s do some talking ourselves.

Hearing Aids, part one: There’s a person attached to those hearing aids

Article by Glen Sutherland, MCISc

My previous post reviewed sensori-neural hearing loss and introduced you to the subject of hearing aids. If you have not already done so, you might find it helpful to read my previous posts. In the next few posts I will provide you with more information about hearing aids in hopes of helping you buy the best hearing aids for you and of helping you adjust to the hearing aids with realistic expectations.

Hearing is such an important sense to most of us! It connects us with so many aspects of our day-to-day world; family and friends, music, television and radio and other sounds in our environment.

Good hearing helps to keep us safe! It may warn us of potential danger in many situations such as when we’re driving, walking on busy streets or hearing alarms and smoke detectors, to name a few.

Really, take a moment and consider how your hearing helps your function well during your busy day on the telephone, at meetings and lectures, during religious services, at the theatre and at gatherings with family and friends. Hearing enables us to socialize, interact and communicate.

When hearing loss is present, it can diminish our quality of life. Problems with our hearing may lead to feelings of annoyance and anxiety at first; and later to feelings of loneliness and even depression. People who experience hearing loss may find they withdraw from communication and social situations and eventually, they isolate themselves completely.

At first, individuals tend to deny that they are losing their hearing. They ignore the signs of hearing loss for awhile. Some signs of hearing loss include but are not limited to:
• Having trouble hearing during phone conversations
• Turning the TV up louder; especially if people are noticing
• Thinking most people are mumbling
• Having trouble hearing in crowded or noisy environments
• Asking people to repeat what they are saying
• Misunderstanding conversations
• Family members and/or friends telling you that you are not listening
• Withdrawing from social situations

Eventually, they decide to get their hearing tested to find out if there is a hearing loss present. In fact, it has been determined that the average person waits 7 years before seeking help.

When you get your hearing tested, you undergo a series of tests which help the clinician ascertain which type of hearing loss you have. The results of the tests also help the clinician recommend how you can best be helped depending on your type of hearing loss.

It’s estimated that ten per cent of the Canadian population has hearing loss. That’s approximately 3.3 million Canadians. Approximately 95 per cent of those who can no longer hear well have a sensori-neural hearing loss. Close to fifty per cent of Canadians over the age of 65 have some degree of hearing loss.

In the vast majority of cases, sensori-neural hearing loss is not medically or surgically treatable. However, most people with sensori-neural loss notice a great deal of benefit from wearing some form of amplification device (traditional hearing aids, bone-anchored hearing aid (BAHA), cochlear implants, etc.).

Most people who have sensori-neural hearing loss purchase traditional hearing aids. Unfortunately, only 15 – 20% of people who require hearing aids are getting the help they need.

Hearing aids can improve the quality of your life. Nearly 95 per cent of people with sensori-neural hearing loss can be helped with the use of hearing instruments. A National Council on Aging (NCOA) survey regarding ‘hearing loss and older adults’ found that when people began to use hearing aids, many saw improvements in various aspects of their lives including mental health, social life, self-esteem, personal relationships and overall health. Family members reported an average of 15 per cent greater benefit than the hearing aid wearers, which indicates that family members and friends notice significant positive changes when their loved ones get hearing aids.

Hearing aids have come a long way over the years. Today, there are many makes and models to accommodate just about everyone. If you think a picture of the different types of hearing aids would be helpful while you read this post, simply, type, “hearing aids, makes and models” into your favourite browser and you will see many links to pictures of hearing aids.

When you buy hearing aids these days, you are buying a tiny computer which can be adjusted to fit your specific hearing loss and provide you with the maximum help you need. These new digital hearing aids provide a clear, comfortable sound and can be programmed to automatically reduce annoying background noise in changing environments.

While the hearing aids will eventually help you a great deal, it takes training and patience to improve your ability to understand through hearing aids. In fact, research indicates that it takes the brain several months to adjust to listening through hearing aids. However, in time you will adjust well to your new hearing aids which will increase your ability to participate more fully in day-to-day listening activities.

More on that in my next post! Stay tuned!

Please note that the information in this blog is presented for the purpose of providing information and should not be used for medical diagnosis or treatment nor should it be used in place of medical advice from your doctor or hearing health care professional.

Some challenges of hearing devices – not your average pair of glasses

Audiologist Glen Sutherland’s most recent post on this blog talked about how hearing aids can improve the quality of your life. And they can. But for those of us who wear them, they can also pose many challenges.

For the uninitiated, hearing aids are NOT like glasses. Pretty much the only things that can go wrong with glasses are that you lose them or the frames break when you drop them on the floor. Both have happened to me.

Hearing devices are another story. Here are a few of the challenges I have experienced.

I have a T-coil switch on my hearing aid to help me hear on the phone and it generally works quite well, a great relief to someone like me who would not be able to use the phone without it. Sometimes however, there is electricity in the air and I get loud static noises when I press the T-coil button on my hearing aid. It could be a plane overhead or an electronic gremlin. Whatever the cause, it just adds to the challenge of carrying on a phone conversation.

Glasses sometimes have a tendency to slip down your nose. A quick push and you are set again. Hearing aids have a mold that is fitted to your ear. Molds work pretty well for a while but eventually they shrink. When that happens, an air pocket is created between the ear and the mold. That causes whistling! Sometimes when people hug me they press against my aid and that can cause whistling sounds. And hats! If the brim of a hat is pressing down on the top of the aid, I get whistling again. Even standing too close to the wall can cause this most annoying sound.

F/M systems also create interesting challenges. For those of you not familiar with this term, these wonderful pieces of technology augment the sound we can receive from hearing aids and cochlear implants. (Unfortunately, my F/M is not compatible with my implant, but that is a story for another post).

I have something called direct audio input in my F/M. This feature, combined with Closed Captioning allows me to understand pretty much everything on television. However, if I move my head just slightly or for some odd reason raise my arm in a certain way, the sound from the F/M cuts out and I hear nothing. I have no idea why! It reminds me of those old fashioned rabbit ears we used to have for televisions. Occasionally someone had to stand and hold the rabbit ears in a certain way for the reception to work.

Just this past week my F/M stopped working. I thought the problem might be with my hearing aid as when I pushed the F/M button on the aid I heard a buzzing noise and then the sound just faded away. Apparently the ‘connection’ (a little piece attached to the hearing aid), was loose. Pretty soon this loose connection would affect the T-coil button as well. Luckily it was an easy fix. I didn’t need to send my hearing aid away for repairs and try to cope with my old replacement aid that gives me only about 50% of the sound I can get with the powerful equipment I have now.

When I remember the rudimentary hearing aids I had as a child I am very grateful for the leaps in technology that allow someone with a very profound loss like me to hear. But they are still a lot more complicated than glasses.