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Listening, not hearing: Starting a conversation around hearing with Aboriginal and Torres Strait Islander families

The Australian Government has pledged $76.4m over a 10-year period (2012–13 to 2021–22) for programs targeted at improving ear health, including raising awareness of otitis media symptoms and the need for early treatment. On 23 March 2018, Indigenous Health Minister the Hon. Ken Wyatt AM will host a roundtable on hearing in Indigenous communities, where communication issues related to hearing loss are felt most poignantly. Jody Barney, an Aboriginal consultant for the deaf and an inspiring advocate in the area, offers a wealth of experience and knowledge on hearing loss in Indigenous communities.

For several years now I have been running workshops with First 1000 Days Australia on Aboriginal and Torres Strait Islander families living with children with disabilities, particularly relating to hearing loss. It is from these workshops that I have heard a cry from frontline workers – from Mums and Dads, siblings and children – to say, ‘before now, I have never known how to start the conversation we need to have around hearing and disability’.

As well as conducting workshops, First 1000 Days Australia’s Executive Director Kerry Arabena asked me to work with her on building a training package around disability and Indigenous families. With a profound lack of research and consultation in this space, Kerry saw this as an opportunity to raise awareness about disability with Aboriginal and Torres Strait Islander people through the lens of First 1000 Days Australia. I was quite nervous, because Kerry comes from such a strong academic background that contrasts quite sharply with my own very aural way of communicating, often done through sign. How would I translate?

I quickly realised I didn’t need to translate. My teaching and my story come from a lived experience of being deaf and knowing communities. My knowledge is grounded not only in grass-roots conversations but also within the service sector. It is from this lived experience that I have identified the gaps and built my workshops, through which I try to walk people through the skills they might need to provide insight on how to have that conversation.

Conversations around hearing loss gave way to conversations around communication in general. What does it mean for families who have children, parents, siblings with hearing loss? How are the experiences of people with hearing loss determined by culture, race, identity? How do people from different pasts, cultures and histories communicate needs and fears and wants and how do other people interpret these? Many people do not know they have hearing loss themselves let alone whether their families do. It is about having the skills to start a conversation about this and being able to listen to people’s needs and aspirations and support them in achieving these.

In the time that I’ve been presenting, I have found a greater appreciation of using my own cultural communication skills: the importance of how we yarn, the expressions we use and how we read people. Sharing this knowledge has made a huge impact on those participating in the First 1000 Days Australia program. I have received a constant flow of messages from people who have attended my workshops, mostly about hearing loss. People have come from all over country, and all walks of life, to talk to me – and the message I am receiving is loud and clear:

People are not gaining the skill set they need to ask questions about hearing loss, to identify hearing loss and to engage in a conversation about what being hard of hearing means to individuals and families without using a deficit approach or attitude.

One worker, Grace, contacted me to say that before my workshop she hadn’t realised that her method of communication, which she’d used for more than 40 years in her work, wasn’t helpful. All her working life she had been direct, authoritarian and had blindly led people through the system. Yet she had never stopped to ask the question ‘Do you understand?’. She believed that by interpreting the system for people, she would make them understand; when all she was achieving was making people reliant on her and upset when they couldn’t comply. She had never realised that plain easy English for some can still be another language for a person who is hard of hearing. She never knew how to communicate.

First 1000 Days Australia opened Grace’s mind. It allowed her to see beyond the traditional top-down, service-driven delivery model: a model that tells patients what to do and piles information on them, but never asks them what they need and what they hope to achieve. Grace had previously not realised the importance of communication in supporting people to understand what was going on so that they were in the position to make their decisions, to define their own needs and wants. It was a turning point in my life to hear a woman of her stature and experience acknowledge that she had not known the best way to understand and support people.

I have had an ongoing relationship with Grace for 18 months now, during which time I have sent her readings, networks, contacts and she has learnt some sign language. Grace is working on ensuring that her First 1000 Days Australia journey within her community has a prominent communication overlay. She is setting up hearing checks more frequently, using Aboriginal Liaison Officers to map clients, and building service networks so that she can connect people to a broader network of organisations and services in other sectors. I look forward to following her journey further.

A young Aboriginal and Torres Strait Islander man working with young men also spoke to me when he began to realise what hearing loss does for these men. He learnt that through enacting small changes – such as changing the way he set up a room, altering the lighting and ensuring only one man spoke at a time – he could vastly decrease the frustration in his men’s health programs. He now has far more awareness of the importance of communication to deaf members.

There are a lot of different techniques that can be used for those with hearing loss, whether it be mild or profound. In my work and in conversation I have found that the barriers do not come from a lack of technology or medical assistance. People do not contact me to ask about interventions or hearing aids, but they do tell me that they need more than these – that these devices and this technology alone are not the answer. While there may be money, programs and technology, that doesn’t mean people know how to communicate. It doesn’t automatically translate into knowing how to have a conversation with an Aboriginal or Torres Strait Islander person who is deaf or hard of hearing. As a result, people are asking me, how do we build on medical assistance or use technology effectively?

World Hearing Day, 3rd March, is about having a context in which to communicate with Aboriginal and Torres Strait Islander people about hearing loss. We all know the deficit data, and we all know the devastating statistics on justice systems and the gaps in health statistics between Indigenous people and our non-Indigenous brothers and sisters. But while the data gurus and champions are out there pulling that apart and dissecting it all, having someone say to you ‘I’m listening or I hear you’ is not about the function of hearing – it is about the purpose of hearing and being able to listen to the conversation.

One we can listen we might be able to support people more effectively to find and utilise their own strengths. You can’t separate the hearing loss from the person. So although you can enhance their hearing through giving them access to technology, overcoming the ‘disadvantage’ takes more than this. It is about enabling people who are deaf or hard of hearing to build a strong, proud sense of self-esteem, identity and then support them to lead their own way in life.

A girl recently told me that ‘her hearing loss opened her mind’, that without it she would have a closed mind on her culture. She became more observant to her circumstances and surroundings, developed a stronger sense of understanding predictability, a stronger resilience and the ability to unpack situations in which she felt vulnerable. What were the avenues of her becoming her own self-advocate?

The beauty of First 1000 Days Australia is that it provides a safe space to ask questions. Personally, it has provided me with the space to have a yarn in a cultural way, and a platform to have these conversations. If we can give such a platform for communication to others, we can then begin to listen.  

Jody is currently the first Indigenous, Deaf, Atlantic Social Equity Fellow. She has just returned from New Zealand where she was hosted by the New Zealand arm of Social Equity Fellows, supported by University of Auckland. The study tour started with a Welcome before they travelled to Waitangi for treaty and constitutional recognition discussions. The trip ended on Country with a sunrise at the most eastern point of New Zealand, the first place in the world to see sunrise. As a salt water woman it brought Jody an immense feeling of nurture.

Next week Jody travels to the Northern Territory for work and then to Oxford University in the United Kingdom where she will present on her Social Equity Project. This is about empowering deaf and hard of hearing Aboriginal and Torres Strait Islander women from the East Coast who are disconnected from their culture to meet with deaf women from the central desert to enhance their communication skills – a cultural exchange. She will bring the project to light in a documentary to be presented at the World Federation of the Deaf in Paris next year. She hopes to bring two of the women with her, to share the experience and build their capacity as leaders.