JILLIAN

26, PhD Candidate in Sociology

Bilateral profound hearing loss with a cochlear implant.

 

"There’s a generation of us who see ourselves as “physically deaf, culturally hearing”. Perhaps the greatest barrier we face is the common assumption that people can only be either Deaf or have perfect hearing... It can make me more vulnerable to being disadvantaged in certain situations as people assume that I can hear just like them."

I tend to alternate between the identifiers of deaf and hearing impaired. Medically, I am profoundly deaf. Socially, I am hearing impaired as my cochlear implant enables me to hear and speak. In most cases I identify as hearing impaired as it suggests that while I can hear and speak, I still face challenges in hearing. 

My parents noticed I wasn’t responding to certain loud sounds or developing speech when I was around 18 months old. This prompted them to take me to Australian Hearing for a hearing test. It was then I was diagnosed with moderate to severe bilateral sensorineural hearing loss and subsequently fitted with hearing aids. By the time I reached Grade 3, my hearing deteriorated to a severe to profound hearing loss where a hearing aid was no longer viable in one ear. As a result, my parents began to explore cochlear implants and I underwent my first cochlear implant surgery at nine years old. 

From initial diagnosis to nine years old, I was a bilateral hearing aid user. I then adopted a cochlear implant while still accommodating a hearing aid on the other ear. At 24 years old, I decided to pursue bilateral cochlear implants, that is implanting my hearing aid ear and re-implanting my existing implanted ear. Unfortunately, during surgery, it was discovered one of my cochlea has ossified and therefore was not viable for a re-implant. As such, I now only have one cochlear implant, with the other ear being completely defunct. 

I do not use sign language. At this stage in my life, I am content with not using sign language and am confident with my spoken language abilities.

I was too young at my initial diagnosis to remember how I felt. However, the failed bilateral implantation at 24 years old certainly made me more aware of my deafness, and how vulnerable I am with reduced hearing. Going from two ‘working’ ears to only one ‘working’ ear has been life-altering. All the sudden I have to think about where I should position myself in order to maximise my hearing ability, such as in group settings.  However, I wouldn’t say I struggled with it. I consider myself to be a highly adaptive person. I always try to adapt with what I’ve been given the best I can, in order to continue pursuing my ambitions.

Another time when I became aware of my hearing loss is when I transitioned from having two hearing aids to a cochlear implant and a hearing aid. Once I adopted a cochlear implant I noticed a huge difference in my hearing ability. I started to hear sounds I’ve never knew existed – birds signing, cicadas, the hum of air conditioners, a ticking clock. This made me aware that there are so many sounds in the world, and I am grateful I have the opportunity to hear them. 

Connecting with other oral deaf and hearing impaired adults has certainly been helpful. To know that other people face the same challenges is very comforting. I’ve always accepted my deafness, but meeting other hearing impaired adults has made me more confident with my deafness and my identity as a hearing impaired individual.  

If I was still in high school, I would say I am grateful for it enabling me to get out of sport! I remember using my deafness to get out of the mandatory 100m race at the athletics carnival, even though my inability to hear had nothing to do with my ability to run. Nowadays, I am currently in the write up phase of my PhD thesis and I absolutely appreciate being able to ‘switch off’ and write in silence. By writing in silence I am about to work with minimal distractions and to focus more clearly. 

I think one of the biggest challenges I’ve faced as a deaf person is locating and then holding on to my identity. As a deaf person navigating hearing society, oftentimes alone, it’s easy to fall into the trap of thinking you don’t belong anywhere. However, meeting other oral deaf and hearing impaired adults has made me realise that there are many other people out there like me who are facing similar challenges. Knowing this made me realise that I am not alone and that my identity has meaning. 

However, it then became challenging to hold on to my identity as identity politics across deaf groups is prevalent. I am proud of my ability to overcome adversity. I am proud of my ability to adapt to hearing society, with the assistance of medical intervention. I am proud to call myself hearing impaired. This is my identity, and it can be challenging to be confident with my identity when others feel the need to tear it down because they don’t agree that is how deaf people should identify and carry themselves. 

Unfortunately, the key way for overcoming the challenge of owning one’s deaf identity is to avoid politics within the deaf communities.