My Journey with deafness, by Donna Smith

Posted by Pindrop Foundation :: Blog Category Contributors

My Journey with deafness, by Donna Smith name


 

Hello, I’m Donna Smith

When I'm using the word deaf it is with small ‘d’. The word Deaf with a big ‘D’ is embraced by the Deaf community who communicate using sign.

Deafness is one of the most common disabilities worldwide.

Hearing loss affects 1 in 6 New Zealanders.
It is estimated that about 2 of every 1000 children are born with significant hearing impairment.
Noise exposure accounts for 16-30% of the adult hearing loss and is mostly 
preventable. 

Unfortunately this ailment is invisible.
A quote from Helen Keller who was deaf and blind: "Blindness separates us from things but deafness separates us from people."

The reason why people go deaf is because inside the inner ear (cochlear) are hairs called cilia. They sway from side to side with the vibration of sound. Once these hair cells have been damaged or lose their function, there is no way to repair or replace them. This change is slow and subtle for most people.

There are several different kinds of hearing loss, and deafness does not have a single cause. Damage may have occurred because of injury, genetics, disease, medication or be age-related. Some instances can involve air compression – i.e. diving or going up in an aeroplane. What we don’t understand is that you may go to sleep tonight and wake up tomorrow – and may never hear again. With this in mind we need to realize how precious the gift of hearing is.

When a person loses all or some ability to hear, she or he loses far more than conversational skills. Work, relationships, leisure activities, health care, and self-perception are all influenced, and every decision a person with a hearing loss makes for the rest of her or his life will be affected by this chronic condition. A hard of hearing person cannot assume anything, least of all the impact that the change from hearing well to hearing poorly has on one’s life.

And, of course, an even greater number of people are affected in some way – colleagues, parents, partners and family members. Almost all of us will come into contact with a deaf or hard of hearing person at some point in our lives.

Being a confident self-advocate is important whether or not you have a hearing loss. Having special needs because of your hearing makes it even more essential that you are able to take care of yourself in whatever circumstances your life brings. No one can navigate your life as well as you can.

Without question, living with a hearing loss in a hearing world, is hard. Your hearing loss informs every decision you make on some level – where to have lunch, how to get flight information at the airport, and how to communicate with the produce manager at the local supermarket. Dealing with daily hurdles such as these can be so frustrating that it may be tempting to become a hermit.
It can also be exhausting. At times, it can feel as if you are living a life and a half, constantly anticipating auditory challenges and thinking ahead to possible solutions. One big positive to keep in mind, though, is that almost all listening is based on context and expectation. When you go to the library, for instance, you can reasonably expect the librarian to ask for your library card when you go to the counter to check out your books. Generally, situations like these carry little stress and are straightforward. 

Some people learn the skill of lip reading (speechreading) or manage to pick up a few words and piece the information together. This works well in one-on-one situations but does not work in a larger group. If hearing is profound some people find carrying around a notebook and a pen to get people to write questions or answers is effective. Communication walls can be broken down.
 
Telephones are a major bugbear for hearing impaired people. This is one of the instances where communication is not anticipated and you are not prepared and normal coping strategies are ineffective. You may understand who may be calling because the person is familiar (i.e. a friend or family member) however you may not understand what information is being relayed. This can be very stressful for both caller and receiver. I have been the unfortunate recipient of a couple of these phone calls – not realizing until approximately half an hour later. Going over what was received the message had to be pieced together. Imagine finally realizing that you’ve been told a relative has died.

With the advent of digital TV becoming available nationwide – there is the probability of more subtitled programmes. In the past – subtitles required a separate decoder. As time has gone by – this option has been inbuilt. A lot of hearing impaired people do not know this is available – and on talking to TV salespeople – the only request is how loud the TV goes. I know myself in the past that if subtitles were unavailable – I ended up going elsewhere and reading a book – missing all my favourite programmes.

Hearing aids can help – however everyone’s needs are individual. The quote I use is that you may put on new spectacles and you can see. However you can put in hearing aids and it does not mean you can hear. 

When hearing aids are needed – the sound proof room does not replicate real life. It’s really quite noisy and hearing aids may only amplify this. Hearing aids that fit into the ear canal can become uncomfortable and ear wax may solidify. Sometimes when you think your hearing aids are no good – it is really that you need your ears flushed as there is a wax build-up. However there is the possibility that the programme installed is now no longer suitable as your hearing has altered. It is extremely frustrating. Generally however if you have purchased hearing aids there is a 1 year grace period when if you feel you are not achieving a good sound, you are able to return as often as required to help you acclimatize. 

Good communication is required with your audiologist as they are the best person to help your needs.

A number of studies have compared people with hearing loss who use hearing aids to others with similar levels of hearing loss who don’t use hearing aids. Hearing aid wearers had higher self-concepts, significant improvements compared to unaided hearing loss in emotional and social effects of hearing handicap as well as improvements in cognitive functioning and depression.

Amazingly, there are a number of purses or drawers that have good hearing as aids are discarded. If this is a situation you know about – its best to get it assessed and rectified. 

While the journey of hearing loss may have been a long one – there is light at the end of the tunnel.

Approximately 30 years ago Australian Dr Graeme Clarke was on the beach trying to find a solution to this problem. He had been working on this over a period of years. While on holiday at the seaside with his family he came across a solution.

A gift of nature – displayed behind me – the humble seashell. He was walking along the beach and picked up a seashell. Its spiral structure was similar to that of the cochlear – the workings of the inner ear. He then picked up a blade of grass and threaded it through the opening – and this was his eureka moment.

There are currently over 250,000 users worldwide.

Cochlear implants are very sophisticated, multi-part electronic devices. They are designed for people with severe to profound hearing losses, and candidates for implantation derive no appreciable benefit from hearing aids. A patient will need to spend considerable time learning how to hear with an implant in the months following surgery because the sound is completely manufactured (in contrast to hearing aids, which amplify sound that a patient’s ear can still perceive). Sounds usually do not sound natural at first. People who have lost their hearing after learning to speak can adapt very well to the cochlear implant, but people born clinically deaf can also experience a marked benefit. 

However cochlear implants are not cheap - $50,000 which is full first year cost. 

The newborn hearing screening has been implemented nationwide in the last few years. This is a test where electrodes are placed on the baby’s head (it doesn’t hurt) and sound waves send back signals. Results can show the hearing loss and action can be taken at the earliest possible time. A child who requires a cochlear implant receives one instantly. However it is desirable for learning that a child has 2 implants and therein lies the pressure on parents of obtaining the money through fundraising.

If you are over 18 you come under the adult scheme which is government funded. Unfortunately there is a waiting list and this can be up to 7 years. This is a real shame as just when you feel you have been thrown a life-line, you may feel like a door has shut in front of you.

Recent work of the Pindrop Foundation and the New Zealand Cochlear Consumers Group has achieved the result of extra funding. The hope is that in the future if an adult needs an implant – they will get one straight away.

*****
The cochlear implant is a highly technical medical device consisting of internal and external parts and is designed to bypass damaged hair cells in the inner ear and directly stimulate the auditory nerve. The brain experiences this stimulation as sound sensation.

The visible parts of a cochlear implant are called the speech processor and transmitting coil. It consists of a microphone, batteries and a mini-computer that analyses incoming sounds and converts them into digital signals. These signals are then transmitted through the skin via the coil to the internal implant by means of radio waves.

The internal implant sends the sound captured by the sound processor to the cochlea (inner ear) as electronic signals which are interpreted as sound.

Implants were designed so that once they have been implanted – they can be left in for life. As the external processor wears out after approx 6 years, new technology can be attached. 

There are a number of cochlear implants – however New Zealand gets theirs from Cochlear. Our nearest producer is in Sydney, Australia and these amazing designs of science are hand made. All proceeds of implant sales go back into research and as a result of this – the most recent processor is trying to perfect the sound of music – a bonus to users. Originally the main purpose of the implant is to help users understand speech.  

*****

In conclusion, if I was a member of the Deaf with a capital ‘D’ the action for applause is by waving hands in the air. However as I am deaf with a little ‘d’ the usual applause is appreciated! I can hear it!
Thank you. 

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