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Children of Digital Sound

February 8th, 2015 by | | Comments Off

Back in December of 2013, I met Bethany M. from Australia while she was staying with my sister in Boston. Bethany recently contacted me saying that she wrote an article for school about the long term outcomes for children born pre-lingually deaf. While it is Australian based, it is also relevant for the United States as well. 

One in a thousand children will be born profoundly deaf, the most common birth defect in Australia. Three hundred children will require lifelong support for this disability each year. But the days of deaf children living in a world of silence have passed. The Australian invention of the Cochlear Implant by Professor Graeme Clark has changed lives of children and their families worldwide. What does the future hold for these children of digital sound?

Invented in 1982, the cochlear implant is the primary mode of hearing for over 250,000 people worldwide, with Cochlear selling 26,674 processing units in 2013. The first ever cochlear implant required a computer the size of a small room to power it. Today, cochlear implants are routine with a short operation where the internal part is placed under the skin behind the ear. Two weeks later, the external processor is ‘switched on’ and sounds received by the processor are converted to digital signals and are relayed to the brain are relayed to the brain to produce hearing sensations. Children who are born deaf and implanted by the time they are 6 months old are expected to parallel development consistent with their hearing peers.

This did not happen to me. I was born profoundly deaf, but was not diagnosed until I was 15 months old. Thankfully, newborn screenings are now in place across Australia to prevent this happening. Fortunately, staff from a centre for the deaf and hearing impaired contacted my parents. My hearing parents had been told by a number of doctors and specialists that I would be unlikely to develop any usable speech and I would have to learn to sign. The teacher of the deaf from the centre told my parents something quite different. They told my parents they believed I could be taught to speak.

This being the first positive statement they’d heard since my diagnosis, we went ahead with the centre’s program and I was fitted with hearing aids until my hearing levels dropped even more. It was recommended I have a cochlear implant. I was implanted at nearly 4 years old and entered primary school with a language age of 3 against my 5 year old classmates.

With years of daily listening games at home and assistance by a teacher of the deaf at school that turned into weekly, monthly and finally once a term, I caught up. At the age of 10, I tested as an adult in areas of my language skills. Parents with deaf newborns would tell my parents they were encouraged for their child’s future because of me. It seemed that the cochlear implant had changed my life, and I had a future that was as bright as any other child.

In a world where technology is all around us it is easy to forget there are many challenges that have not been faced or researched. Despite the over 100 universities around the world conducting research into the cochlear implant, there is little information about the life outcomes of the children whose sound has only ever been digital. These are the children who were born profoundly deaf and have grown up in a hearing world, removed from the deaf community.

At the age of 13, I became a netball umpire, my first ‘job’. This turned out to be a good job for me, as I could never hear the comments that players would make about my umpiring choices. That is until a netball manager emailed my mother to apologise for a netballer who had made rude comments about my hearing loss. I didn’t even hear the comments the girl had made so it was upsetting that someone was making cheap shots at me that I couldn’t defend myself against.

This was possibly the first instance when I truly realised I did not hear as well as everyone else. I’d always thought I didn’t miss much. But the truth was that while I could speak like a normal 13 year old, I couldn’t hear like one and I never would. It is the same for any cochlear implantee. While they give us enough access to sound to reproduce natural speech and to be mainstreamed into society, there are gaps technology is still striving to close, such as their poor function in noisy environments.

Maggie, an 18 year old cochlear implant recipient, has expressed her own concern about finding part time work, saying that she is “a little intimidated about restaurant jobs,” because of their potential noisy background environments. She said however, that she would tell an employer about her hearing loss from the resume stage. The disability act says a person does not need to reveal their hidden disability unless it would affect job performance, but it is very difficult to explain a cochlear implant because each individual struggles with different areas, such as listening, music or speech. I am similar to Maggie – I struggle in noisy environments.

Despite Maggie’s concern and the limited information on pre-lingual Cochlear Implantees, they have been successful in many job roles that are situated in a noisy environment. Information is limited as this is a relatively new technology with regular implantation of children beginning in the 1990’s. My implantation was in 1997, so I am a part of this group. I started my first official part time job at the age of 16 working at checkouts in a major department store. I told my employer at the end of the interview about my hearing loss, and she told me to expect a phone call for a position. A few years later, I moved into my current job at a chocolate factory. Again, I worked in customer service. Both of these workplaces were in busy retail environments with lots of noise. While I did enjoy my job at the department store for a while, one day I received a customer complaint about my ‘inability to listen’. I decided to move on and received my job at the chocolate factory, which is more rewarding. I don’t think my hearing caused the problem in my previous job; rather, it was a lack of patience and understanding. My cochlear implant was visible because the company required me to wear my hair up.

Rachel, one of the first paediatric cochlear implant recipients in the United States, agrees there are misunderstandings. She was implanted at two and a half years and is now 27. She has held a number of jobs and says she won’t tell an employer about her hearing loss until the interview or upon receiving a position. However she believes if the cochlear implantee has to ask an interviewer to repeat a question, the implantee should explain why. Otherwise there is no need to share the information until the job commences because there are still many misconceptions about deaf people. I can relate to this, I used to wear my hair up exposing my cochlear implant in my early teens. People would automatically assume I couldn’t hear very well or couldn’t speak. I now strategically wear my hair so that the cochlear implant is not visible.I have noticed a big difference in how people related to me since doing this. Hiding the cochlear processor may be a simple solution for girls but not so easy for boys with shorter hairstyles.

Lisa, a speech therapist who specialises in working with cochlear implant recipients, says that recipients should be upfront as there is nothing wrong with wearing a cochlear implant and people need to be educated on what they do. There are still many misconceptions about the implant, and more awareness is needed. She would advise that jobs in noisy environments, such as an orchestra director or construction worker, may not be the best for recipients, but she knows of recipients who are speech therapists or surgeons.

Throughout my media degree I have had a few problems that can’t be solved easily because of the fact I have cochlear implants. Some positions require in-ear radio microphones and often the earphones can’t be changed to suit my personal audio cable that connects directly into my cochlear implant. As I can’t hear anything through my ears, these mics are useless, and it becomes necessary to reveal my disability to get help. It is a cycle – it’s difficult to tell others about your disability, but the system and understanding won’t change unless those who have it are upfront and open about it.

So while there isn’t a lot of research on child implantee success with cochlear implants as they grow into adults, as I have demonstrated there is some evidence that they lead relatively normal lives. These children have paved the way for deaf kids who can hear and speak. They will continue to do so until there is a greater understanding towards cochlear implants. There is a new generation of deaf children whose sound has only ever been digital, and there will be future generations of them that can succeed in a world that is 99.9% hearing.

I think the way Dr Richard T. Miyamoto described it puts it best. “One day our patients will be able to tell their own stories, and we will no longer have to convince naysayers that deaf children can listen and speak.” That day has come.

Summary of Sources:

 

Biography — I was born profoundly deaf and implanted at the age of 4. I’m from Australia and currently studying Media and Communication in Melbourne.- Bethany M.

 

 

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