SOUND OF SILENCE: Helena Swan remembers being called "deaf and dumb" at school.
SOUND OF SILENCE: Helena Swan remembers being called "deaf and dumb" at school.
Cochlear implants can transform a deaf person's quiet, isolated life, writes Annemarie Quill.
"Helena Swan is deaf and dumb."
Stark chalk words on a blackboard used to greet Helena Swan when she entered her classroom. Born profoundly deaf, she was relentlessly teased at school.
"A bunch of girls tried to flush my head down the toilet once ... another time someone told me a teacher wanted to see me, but there was just a bunch of kids waiting who pushed me around."
She changed schools several times but the bullying never stopped. Swan even contemplated ending her life.
"I had a very hard time when I was a teenager, and in my early 20s. People don't realise how difficult deafness can be. It is a hidden disability, an isolating disability, because it is one of communication. I went through three secondary schools. I battled to make friends and keep friendships. I was bullied by both boys and girls. Some teachers were impatient with me. It was exhausting to be the best I could be to prove that I was not stupid."
The torment continued at university. "At tutorials I tried to lip-read. Usually I was silent as I wasn't quite sure who was saying what. One day I really thought I had a relevant comment to make about a topic we were discussing. I put my hand up, said my bit, and there was silence. The lecturer looked at me in a funny way, and said: 'I just said that'. I was so embarrassed. I never made another comment in that class."
Children love my sense of humour, especially when I can't pronounce the word or name correctly.
Now 42 and mother to four children, Swan is still walking into classrooms. She has been a teacher for 18 years. She has taught at both Merivale and St Mary's Catholic primary schools in Tauranga and this year completed a Postgraduate Certificate of Education in Perth, where she now lives.
"My mother believed in me, that I could have a career. She helped me learn a combination of lip reading, finger spelling, stereophonics and speaking. I learned by breathing and placing my tongue in a certain place in my mouth I could make the sound, but I would never hear it myself. I found things that I loved like art and music. I can hear a beat so I love dancing."
Swan wears hearing aids but mainly lip reads, which has led to some funny situations in classrooms.
"Children love my sense of humour, especially when I can't pronounce the word or name correctly. I just tell them to teach me how to say it or we try to break the word up in syllables, or they would have to act it out or say the word that sounds like it. For example, kia pai equals car-pie and spaghetti equals spa-get-tea. Sometimes there would be confusion, for example 'colourful' is the same lip reading as 'I love you' and 'pajamas' is the same lip reading as 'banana'."
Swan never had problems communicating with children or getting teaching jobs, although she did face concern from some parents.
"Some went to the principal to ask if they could change classrooms. Principals always backed me and told parents that I am a fantastic teacher who is dedicated and passionate about child development and individualised learning. They asked parents to give me a few weeks and then they could change if they wanted to. No one ever changed. I was so happy that I could finally prove myself."
It will be amazing to hear my husband and my children's voices.
Despite this, since moving to Perth, Swan's hearing has deteriorated and she has struggled to get a teaching job. "I do not put a tick that I have a disability on the job application. When I do get an interview, they ask me why I didn't tick it. I say because I do not have a disability, I am deaf and I am a gifted and talented person and how come you don't have a box for gifted and talented on your application?"
After 42 years in what she describes as "lonely isolation", Swan was finally assessed as being "deaf enough" to receive a cochlear implant, and on Wednesday this week she had the operation in Perth. Her implant will be switched on on December 23. Swan is looking forward to the first Christmas she will hear her family's voices for the first time.
"It will be amazing to hear my husband and my children's voices. They are worrying about it because I am the rock of the family but I want more in life ... I want to be a successful, strong career woman who can do anything."
Hearing does not come cheap.
Swan will have an implant in just one ear and the operation costs AUD$35,000 NZD$38,000 per ear. Her health insurance doesn't cover all the costs, so she is trying to raise funds through a Givealittle page.
Enabling adults with profound hearing loss to receive funding for cochlear implants is the mission of the Northern Cochlear Implant Trust (NCIT) and the Pindrop Foundation.
Its chief executive, Lee Schoushkoff, is in Tauranga for a Christmas function for some of his Bay clients who are on the waiting list for an implant. Schoushkoff doesn't have an office; he travels around the regions and knows people on the waiting list by name. He believes an important part of his role is meeting and discussing issues with clients.
The NCIT has 62 adults on a list and, for some, the wait can take years.
"It will always be assessed on clinical need, so some people spend a long time on the list as they have hearing loss, but others have worse so get moved to the top of the list faster."
Each year, the ministry spends more than $8 million nationally on cochlear implant services, which funds 40 adult implants, 30 children's implants and up to 16 implants for newborns. The NCIT, which includes the Bay of Plenty region, receives funding each year for 20 adults, 15 children and eight from the Newborn Hearing Screening programme.
The fact eligible people under 19 now receive two funded implants can be attributed to tireless advocacy by both Pindrop and people waiting for an implant. These people visited former Health Minister and former Bay of Plenty MP Tony Ryall and were able to convince him additional funding made sense. However, adults over 19 will still only be funded for one implant. Schoushkoff is pragmatic about this. He recognises there is limited funding and while two implants would be the most desirable, his achievable dream, he says, is to be able to help as many adults as possible get cochlear implants without waiting too long. Cochlear implant funding is part of the disability budget and as such, the funding does not increase each year.
In his view, funding for cochlear implants should be categorised as other elective surgery for which the waiting lists are months, not years.
In order to give a voice to this issue, Pindrop Foundation is planning a campaign to raise awareness about the programme. More awareness, he says, will mean more people will talk to politicians about the benefit of cochlear implants.
"There is a strong economic argument that obviously improving people's hearing enables them to get jobs and contribute, but for me it is about connecting people with their communities. If you cannot hear, you are isolated and cut off. It is the one sense you really need to communicate and communication is the essence of life."
Nurse Josie Calcott (second from left) says her life was transformed after receiving a cochlear implant, with Lucy, 10, Ben, 12, Jensen, 6, Stefan Calcott and Tessa. Photo/George Novak
Josie Calcott agrees a cochlear implant has given her more than sound. It has transformed the quality of her life, she says.
The 40-year-old mother of three had lost her hearing as a toddler after a bout of chicken pox. Someone recommended cochlear implants 12 years ago after the birth of her first child. When she had an assessment some years later in the southern region where she was then living, she was told it could take several years. She burst into tears.
Eventually having moved to the Bay, she received an implant in her right ear in 2012.
Speaking about this in her Papamoa home, she strokes her feet on her boxer, Tess. Her journey to hearing is still so emotional for her that her eyes fill with tears.
"I never knew any different but now that I hear, I realise even more that not hearing was incredibly isolating ... and exhausting."
As a nurse I see people far worse than me health-wise.
Like Swan, Calcott was teased at school, "but I couldn't hear the names they called me". She, too, learned to lip read and used hearing aids. She qualified as a nurse and works in Tauranga Hospital.
"When I couldn't hear it actually made me a better nurse sometimes, as I would be so attentive to visual signs and would be one-on-one with the patient focusing on them completely."
But with three children at home and her hearing deteriorating, Calcott struggled to cope with the sheer exhaustion of living in a world of silence.
"I never heard my babies cry ... they learned to sleep through the night ... when they started to talk I only heard muffles."
When her implant was first switched on, both the therapist and student in the room wept. Calcott says it a long process to be able to hear sounds like other people do.
Calcott had the cochlear implant in her right ear and still wears a hearing aid in her left ear. In an ideal world she would like to receive a second implant.
"It makes me feel unbalanced ... there is too much sound coming in one ear."
But for the moment she is grateful for what she has. "As a nurse I see people far worse than me health-wise. There is only so much money to go around. I have three beautiful children and I now can hear in one ear ... I am lucky for what I have."
Aynsley Staessens, Human Resources manager and mother of three, received a cochlear implant in June. Photo/John Borren
At Aynsley Staessens' Lakes home, the Christmas lights twinkle on the tree and Christmas candles light up the room, even though it is early morning. For Staessens too, it will be the first Christmas she will hear the sounds of the season. The 32-year-old is still adjusting to the cochlear implant in her left ear, which she received in June.
With three children aged 5, 4 and 2, Staessens works full-time as a human resources manager. Born with a severe hearing loss in her left ear and a moderate hearing loss in her right, her hearing deteriorated in 2011 after the birth of her child.
In 2012 she tried to get on the waiting list for an implant but was declined.
"My hearing kept gradually declining following this and therefore I was eventually put on the list in early 2014.
She wears the processor confidently in her hair.
"You can get them in different colours. I have a black one too. You can put tape-on jewels on them too."
Her confidence now is different from the girl who grew up not wanting to wear hearing aids, teased at school for her "plastic ears".
"Now my children will openly say, 'have you got your ears on, mummy'? For them it is just how it is. They do not treat it as a disability, and neither do I."
Even just months after the implant, the difference in her quality of life is striking. "Before I wouldn't hear clearly enough to correct my children if they were not saying something right. Now I can. Then the little things - I have heard cicadas for the first time ever."
I have achieved so much without hearing, but I believe I can give more back to the community.
In Perth, Helena Swan also cannot wait for her first Christmas party when she can hear voices and not only dance to music, but sing along too.
"My dream is to hear the lyrics in songs so I can sing the words too."
She also dreams of being a public speaker or consultant teacher.
"I have achieved so much without hearing, but I believe I can give more back to the community. I want to make a difference. Hearing for me will be a true miracle. I have realised how much of life I was missing out on. And I want to live my life in full sound. It's my time."
* More than 20,000 New Zealanders have severe hearing loss.
* The first cochlear implant operation was done in New Zealand in 1986. Since then, almost 1200 New Zealanders have received implants.
* The Northern Cochlear Implant Trust (NCIT), which includes the Bay of Plenty, has a contract with the Ministry of Health to provide the implant programme. It works closely with the Pindrop Foundation and shares the same board members and CEO.
* Pindrop was established to increase awareness about cochlear implants and fundraise to build up a capital base that could support sustainable spending to fund cochlear implant services for adults, additional to those funded through the government contract.
* A long-term strategic goal of the Pindrop Foundation is to develop a centre of excellence for cochlear implant (CI) services.
* NCIT has brought the University of Auckland into the cochlear implant programme as a first step towards building research and audiology student training capability into CI services. NCIT believes the involvement of a university will further enhance the quality of services. Discussions to involve the University in the new facility are proceeding.
