The strength of our CICADA group has always been that we have gathered socially at various events and that personal collaboration has reassured many deaf people that the CI can work really well and make a huge difference to their life. Our morning teas and BBQ days are an opportunity to learn more about implants and how to use them for maximum benefit, to learn about other assistive devices, to simply practice conversation in a small group where people understand that it works best to speak nice and clearly and one at a time!! It also gives you an opportunity to discuss your areas of difficulty.
I find that many people who have an implant, become an “accidental” advocate when they can describe to others how the CI works and just how important it is to have some hearing and feel connected again to life.
Well that’s how it happened for me!!
Our Sydney CICADA group have become firm friends through our shared experience and working together to help others. I would love to see advocates all over Australia (translate this to a Global perspective even) that can act as volunteer local CI representatives or coordinators to bring implant recipients together socially to share their experience. New recipients benefit from practicing conversation in a social setting, especially if they live alone and don’t have much contact with others. There are many online auditory training exercises, but sometimes people need help learning how to access these or finding the right ones for themselves.
It’s beneficial to have a wide network to give voice to the CI Program, particularly when it comes to speaking with government.
In Australia, we currently benefit from funding for implants which has been provided only because people spoke out and fought for it. If you don’t ask, you don’t know what can be achieved and it is a matter of equity, to keep speaking out for those who can’t afford upgrades or improvements to their situation to help them be the best they can be.
In this webinar Sue Archbold, Consultant on research, public policy and practice in hearing loss and cochlear implantation, discusses advocacy and empowering community voices- what role can consumers and health professionals play? If you have time to watch this, it is very interesting.
It is important to raise awareness of hearing loss generally so that more people can be aware of situations that arise just from poor communication. This is a long-standing problem. See this article on Indigenous health and hearing loss which highlights this: https://www.themandarin.com.au/135332-opinion-how-mainstream-services-are-failing-the-many-indigenous-people-with-hearing-loss-in-custody/
There is a very good GUIDE TO HEARING LOSS on the CICADA website which is designed to help inform about hearing loss generally as well as information on hearing aids and implants which you can share with people
There are many people with profound hearing loss who don’t know about the implant or how to get a referral to someone they feel they can trust to give the best advice. Some have heard of recipients who aren’t doing very well and this puts them off pursuing the idea of an implant for themselves. It’s here I ask, “Who and why are SOME not doing well??”…. “did they get good support from their clinic to get started”…”Did they get advice and reassurance and practice to help them improve” ??
Think back to when you first lost your hearing, when and how you found out about the CI and then, how it was in the early days learning to use it. Then think about now and how it has changed your life. Your personal experience is of great value to someone in that same situation. We encourage you to share it with as many people as possible so that others can learn about the CI and see it in action.
I would love to see an Australia-wide database for implant recipients that we can use to connect with each other. Maybe we can work on setting up small local meetings in all sorts of remote locations so that CI recipients feel supported. Maybe we can start up local conversation circles to help new recipients practice their listening skills. As the saying goes: “From little things, Big things grow”.
Think about what you can do, to share your own experience of hearing loss and the cochlear implant and help get the message out there.
Creating a community brings its own rewards.
Sue Walters: President - Cicada Australia Inc.