Bec Stewart was a presenter at the 7th National Deafness Sector Summit in Melbourne in April 2012. This is the story she shared…
I am 19 and I was brought up in a mostly hearing impaired family. I have 10 deaf and hearing impaired relatives and was fitted with hearing aids at five when I had just started school. At the time, it was actually something really exciting to me. I had always wanted to be like my big brother and my daddy, and I loved the hearing aids for the first few months. But soon the newness wore off. I needed to be told to put my hearing aids on each morning and didn’t want everyone to know I was wearing them. They made me feel different, and alienated. I hated it.
My father, Andrew Stewart, works for Printacall which meant when I was growing up we had access to a lot of technology including hearing loops and TTYs which made it much easier to have a ‘normal’ childhood and even gave my mother the benefit of having us entertained in front of the TV with it on mute, as my brother and I could hear the TV through the loop system. When I was about 8, I was able to choose to have purple hearing aids, which made me much more willing to wear them and for people to know I was wearing them. Mum also had the great idea of putting diamante stickers onto my hearing aids as well, which greatly increased my confidence in wearing them visibly.
When I was 6, I was given an FM which was to help me in the classroom. However, it involved me wearing a belt pack with a neck loop. I detested it. It made me feel further alienated from my peers and, whenever I could, I would ‘forget’ to bring it to school. When I was in high school, however, I was given a microlink receiver. This fitted onto the bottom of my hearing aid, which made me willing to begin using it again.
As I got older my hearing began to get worse as I have a progressive hearing loss. This has helped me to accept my hearing loss. Because of the extent of my loss, I no longer needed to be told to wear my hearing aids as I could no longer function without them. I needed them to communicate with my peers so I just accepted them as a part of my life and as a part of who I was. All of my friends know I’m hearing impaired and we often joke around about it. It’s not something that I have any shame about and am open to people asking me questions about it.
One of the things that helped me to accept my hearing was my relationship with my two beautiful cousins. Heather is 17 and doing her HSC and Mandy is in her early 30’s. The relationship between us is very special due to the unique circumstances of us all being hearing impaired. We have a mutual understanding of the struggles that come with such a condition. Mandy in particular has been an encouragement and an amazing role model to me in the way that she handles her hearing. As a young girl, looking up and seeing her have no shame about being hearing impaired, it helped me to see that there was no reason for me to have any either. Having these two in my life has greatly helped me to deal with the struggles that I’ve faced.
My mum has been a great support, encouraging me to never let my hearing loss stop me from achieving. One of the other major factors that helped me deal with my hearing was my Dad. He has a passion for social justice for people who are deaf or hearing impaired, and has fought for many things including the recent development of Australian Hearing supporting young adults until the age of 26 rather than 21. He also does talks to different groups of people to help them understand the perspective of someone who is hearing impaired. He does a lot of work for the Deafness Forum and other organisations. He has been an amazing role model in my journey and is someone who I aspire to be like – and I’m not just saying this because he’s driving me home!
He has opened my eyes to the bigger picture of things, and taught me not to just accept the way things are, but sometimes you have to fight for things. One of the most important things that he has taught me through his work is how he uses his hearing impairment to help others. He doesn’t just let it stop him from making a difference but he uses it so that others who are subjected to the same things as us can benefit. Through this Dad taught me not to let my hearing stop me from achieving something, and that I can use my hearing or lack thereof to help others. Which leads into a recent experience of mine.
I have just finished a Certificate IV in Theology and Christian ministries, and as a part of that course last year we spent 2 weeks in Indonesia. During which all of the students were sent off to a remote village for 3 days at a time. I stayed with a lovely family with a weekly income less than $25 a week. Their 16 year old daughter, Ayu has a severe or profound hearing loss. It was so difficult to see this young girl struggle to communicate because they cannot afford to get her hearing aids or any form of support that she needs. This ignited a passion in me and I am now in the process of finding a way to help her. It also showed me something that I would like to do in the future – to help others in developing nations with disabilities. It is also something I’m currently looking into.
As mentioned I have an older brother who is also hearing impaired. However, he has struggled a lot more with his hearing. He was bullied a lot in school and because of some of these experiences he doesn’t like people to know about his hearing impairment. He recently bought some micro hearing aids so that they would be less noticeable. Before he received these last year he would rarely wear his hearing aids so that his friends wouldn’t know. He didn’t have the same support network that I had as a child with my two cousins. Because he was a boy he didn’t really always want to play with the girls making it harder for him to come to terms with his hearing loss. However, even my dad in his early 20’s didn’t like to make a point of his hearing impairment. So it may just be a matter of time.
A few years ago my dad received a cochlear implant hoping to improve his hearing. We all knew that there was a chance that it wouldn’t help him. There’s no way of being sure if it would be successful, but we still thought everything was going to go smoothly. However, that wasn’t the case. When he had his processor turned on for the first time it caused him a lot of pain, among other symptoms, and normal mapping criteria had to be abandoned. It was extremely difficult for everyone because we had all hoped that everything would go smoothly and he would be hearing better than before in no time. It was also scary because it meant that if my hearing got worse I may not be able to get a cochlear implant since my hearing impairment is genetic. Maybe it wouldn’t work on me either. Fortunately, however the implant did end up helping him greatly. It just took a lot longer than we had expected. It took over 12 months after having the processor turned on for him to reach the point where he was at before the operation. But after that he had a slow but gradual improvement on where he was beforehand. None of us regret him having the operation now. He can hear much better than before. Not only that, but his brother and both sisters have been implanted as well. They were all blessed that it did go smoothly for them and have had massive improvements on where they were beforehand.
My grandmother was not always hearing impaired. In fact, she was only recently fitted with hearing aids. It has been difficult for the entire family trying to get her to have the tests and get to where she is now. She’s been needing hearing aids for quite some time but never really listened to the family. Once she got them there were further problems of trying to persuade her to wear them. She instructed us all that once she gets them none of us are allowed to tell her to put her hearing aids on or anything of the sort – meaning that when she got them and would only wear one of them, there was nothing we could say or do. She didn’t want to wear it, so she didn’t. Eventually her audiologist was able to get her wearing them both properly, but only after her trying the patience of her children and grandchildren.
There’s one last person I’d like to tell you about, her name is Jess. I met Jess at the beginning of the year in my course. Jess comes from a family like mine where most of her family are hearing impaired, only she is the one who has normal hearing. So Jess’ mum is hearing impaired, as is her younger brother and sister, but unfortunately her family is ashamed of their hearing. Because Jess’ mum is ashamed of her hearing impairment, Jess’ brother and sister believe that they should be ashamed of it as well. Their mother has unintentionally taught them that it’s not ok to be hearing impaired and their friends won’t accept them if they knew. This is one of the worst positions a hearing impaired or deaf child could be brought up in. I have been blessed that this isn’t what my family is like at all, but I can’t imagine how ashamed my brother and I would be if it were. It is really important for parents, not only to say it, but to live out that it’s ok to be different, to be hearing impaired or deaf, or just in general different from everyone else. If you say it but don’t live it out, it really won’t make an impact.
April 2012
