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Transcript of article published in The Adelaide Review Jan 18-31 2008 : Letters to Editor

Hidden in full view

The ability to communicate forms the basis of our society so if a person finds communication hard they may be sidelined. Hearing impairment, an increasing problem in our aging population, causes a breakdown in communication and is a disability hidden in full view. Unlike a person with a physical handicap or someone who is blind there are usually no visible signs of deafness. People do not look deaf, they still have two ears, and, because they speak well, many do not 'sound deaf'. But even when a deaf or hearing impaired person is present in a group they may not be able to contribute because they cannot easily follow conversations. The group, albeit unintentionally, tends to ignore them and so not only the disability but also the deaf person becomes hidden in full view.

This is often the case for people with late onset deafness. They grew up hearing, were fully integrated into the hearing world; at school, at work and socially. When they lose their hearing they do not have the resources and support structures to deal with this loss. Rather than struggle in a world predominantly geared to hearing they frequently withdraw. They may be grieving for their loss, afraid of sounding stupid; being misunderstood and in turn misunderstanding which adds up to considerable frustration. Even catching the words of someone next to them can be difficult over a babble of noise. Many will be denied a job (or retrenched) because they can no longer participate in the same way as hearing people. This inability to easily communicate imposes social isolation.

In South Australia at this date, there are fewer than 300 adult Cochlear Implantees and only around 30 more are implanted each year. Based on the statistics of incidence of sensorineural deafness in the population, currently more than 4,500 people in South Australia could benefit from this ground breaking technology and be released from their isolation, but they do not know about it. I now work as an Advocate for Cochlear raising awareness within the general public.

Felicity Bleckly, Adelaide

The original article - uncut, Text in green is the text which was cut out.

Hidden in full view

The ability to communicate forms the basis of our society so if a person finds communication hard they may be sidelined. Hearing impairment, an increasing problem in our aging population, causes a breakdown in communication and is a disability hidden in full view. Unlike a person with a physical handicap or someone who is blind there are usually no visible signs of deafness. People do not look deaf, they still have two ears, and, because they speak well, many do not 'sound deaf'. But even when a deaf or hearing impaired person is present in a group they may not be able to contribute because they cannot easily follow conversations. The group, albeit unintentionally, tends to ignore them and so not only the disability but also the deaf person becomes hidden in full view.

This is often the case for people with late onset deafness. They grew up hearing, were fully integrated into the hearing world; at school, at work and socially. When they lose their hearing they do not have the resources and support structures to deal with this loss. Rather than struggle in a world predominantly geared to hearing they frequently withdraw. They may be grieving for their loss, afraid of sounding stupid; being misunderstood and in turn misunderstanding which adds up to considerable frustration. Even catching the words of someone next to them can be difficult over a babble of noise. Many will be denied a job (or retrenched) because they can no longer participate in the same way as hearing people. This inability to easily communicate imposes social isolation.

You, as a hearing person, have never experienced deafness so you find this disability difficult to understand and may contribute to the sense of isolation hearing impaired people experience. Many hearing people show frustration at repeating themselves, will not speak slower or a little more clearly. They do not face the deaf person or they cover their mouth when speaking. Hearing people can be rude, laugh at or even ignore someone who is having difficulty communicating. This response says "you don't matter" and causes a deaf person to withdraw further hastening them into isolation.

Recently my hearing impaired friend Debbie, was standing in a checkout queue. The person behind her spoke and of course Debbie did not hear. The check-out operator pointed out she was being spoken to so Debbie turned, apologised and pointed to a badge she was wearing; "I have a hearing impairment. Please speak slowly and clearly so I can understand you." The person in the queue responded, "Well you should have the sign on your back." (There are many responses which come to mind for this kind of thoughtlessness.)

Eventually social isolation turns into physical isolation because the hearing impaired opt out of attending uncomfortable situations. They become trapped in their own homes because they cannot easily use a phone, hear someone knocking on the door, listen to music, the radio or television and because social gatherings are just too hard, often boring and sometimes downright hurtful.

As our population ages(1) we not only face the issues of isolation so often experienced by older people, but many of us will, because the commonest cause of deafness is ageing(2), have the additional frustration of not being able to easily communicate. According to Professor Graeme Clark, 2007 Boyer Lecturer, currently around 60,000 people in Australia are profoundly deaf with a further 160,000 severely deaf.(3) Even if deafness remains at three people in every 1,000, there will be a natural threefold increase in people who could be isolated by deafness simply because they are ageing. But it gets worse. Due to the high incidence of listening to very loud music in our youth, it is expected we will re-write statistics because many more will suffer from deafness.

Treatment for deafness is different to that of failing vision, another health issue for an ageing population. As a general rule, failing vision can be treated by an optometrist with prescriptive lenses. These glasses correct vision giving the individual 'perfect' sight again. The treatment for deafness is a hearing aid, but unlike glasses a hearing aid cannot correct the problem. All a hearing aid can do is magnify or increase the sound volume and cannot fill in the sounds the wearer cannot hear. For many people making the sound louder will help them understand speech a little better but there are others for whom a hearing aid will not work. In a sensorineural hearing loss the conduction cells in the inner ear have died meaning the connection to the hearing nerve has been damaged or destroyed. For a person with this kind of loss it does not matter how loud the sound, they simply cannot hear it. Wearing a hearing aid for them is much like putting glasses on a blind man. It does not matter how strong the lenses, he will still not be able to see.

Professor Graham Clarke, in his lecture talks about how devastating it is to lose one of your senses. It was his research, following on from earlier research attempts, that the "Cochlear Implant" or "Bionic Ear" was developed. A Cochlear Implant allows many profoundly deaf people with a sensorineural hearing loss to regain the sound and sense of speech. Unlike a hearing aid a Cochlear Implant does not amplify sound but processes sound to an electrical impulse, conducting this impulse through the internal part of the implant directly stimulating the hearing nerve. This by-passes the damaged portion of the Cochlear and means the whole range of sounds can be heard again. The stimulation received by the hearing nerve is very close to the stimulation a fully hearing person receives naturally. Thus sound experienced by a Cochlear Implantee can be very close to the sound they used to receive naturally, before becoming deaf.

I am Felicity and I received a Cochlear Implant when I was 52 years old. This is my story. When I was 9 years old I had a severe bout of measles which left me with a legacy of slowly deteriorating hearing. At first I didn't notice anything and I planned a music career; piano teacher, sales person, entertainer. But by the time I was 30 years old my left ear had become completely deaf and my right ear had dropped to about 40% of normal hearing. Speech had become difficult to understand without a hearing aid augmented with concentrated lip reading. Over the next five years the hearing in my right ear dropped considerably, my hearing aid no longer helped and I was struggling in a hearing world. Things I had taken for granted were denied to me; radio, television, meetings, telephone and of course playing the piano.

By the time I was 40 I was profoundly deaf with little effective hearing. I lost my job had to sell my piano, and lost touch with many friends and family members simply because I could not easily and regularly communicate with them. I had become hidden in full view. I resigned myself to a life of deafness, learnt sign language and socialised with the Deaf community. But despite this, since I am culturally hearing, I wanted to hear. I missed the social interaction, the phone calls and most of all not being able to play and enjoy the piano.

I became aware of Cochlear Implants and investigated whether this technology would help me. After rigorous assessment by the Cochlear Implant team in South Australia and a five year wait it was my turn for the surgery. I could not hear immediately I received the implant. My ear had been traumatised and needed time to heal. I also needed the external speech processor to be programmed for my specific hearing need.

About 2-3 weeks after the surgery the external processor was programmed to communicate with the implant and then switched on. Switch on is a very emotional time. I knew my implant was working but what I didn't know was how much benefit it would give me; whether I would be able to make sense of the new stimuli I was receiving.

My worries were unfounded and within a few minutes of switch-on, although everything sounded strange, I was understanding speech without the need for lip reading. My left ear (or worst ear) had been implanted and the hearing nerve in that ear had not been stimulated for almost 30 years. The nerve needed time to wake up and adjust to sound. But within a few days and with more fine-tune programming, speech became clearer and sounds took on the quality I remembered. Within a short time I was again listening to and understanding the radio. But best of all within a few months I could enjoy playing the piano again, a poignant and unexpected gain. Since receiving my implant in early 2003 I have been given my life back. Life is so much easier when I can understand and communicate with the people around me. Life is so much richer when I can participate, play the piano, listen to music or the radio.

In South Australia at this date, there are fewer than 300 adult Cochlear Implantees and only around 30 more are implanted each year. Based on the statistics of incidence of sensorineural deafness in the population, currently more than 4,500 people in South Australia could benefit from this ground breaking technology and be released from their isolation, but they do not know about it. I now work as an Advocate for Cochlear raising awareness within the general public.

I am available for presentations to potential recipients and interested community and self-help groups, schools and professional organizations. Check the Cochlear Awareness Network website to contact me.

Felicity Bleckly, Adelaide

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