The experiences of people with hearing loss are informing efforts to drive wide-ranging societal changes, reports journalist Cate Carrigan from the recent launch of the HearMe Project’s report. (This article was updated on 13 March with Twitter analytics).
Cate Carrigan writes:
Australian music theatre performer Josh Piterman first noticed a whooshing sound in his ears around the time his starring role in a West End production of Phantom of the Opera was cut short due to a COVID-19 shutdown in London last year.
“It was like listening to a seashell, but continuous,” he recalls. “It was uncomfortable, annoying, and frustrating and it wouldn’t go.”
Piterman, who hosted the recent launch of Soundfair’s HearMe Project’s report, says his experience with tinnitus (a persistent buzzing or ringing in the ears), and interaction with medical specialists who gave him ‘very limited’ advice on strategies to deal with it, underlines the key message of the report.
This is the need for lived experience to drive change in the treatment of people with hearing conditions.
Soundfair – a Victorian member-based non-profit committed to hearing equality – wants the report to raise understanding about the limitations of the medical model of disability, treating hearing conditions as a problem to be overcome with a simple intervention, usually a device, rather than as a social issue.
As one of the contributors to the report says:
We’re not getting the complete message out as to what it means to have hearing loss. It’s not just ‘whack in the hearing aid and you can hear perfectly’.
I often get asked ‘why can’t you hear if you have hearing aids?’ People don’t realise that hearing aids don’t make you hear perfectly.” – Jane
The report, released at the end of Hearing Awareness Week, calls for consumer-driven choice in hearing services to address needs beyond devices, increased accountability for and access to services, and in line with the Federal Government’s Roadmap for Hearing Health, backs increased investment in public health initiatives incorporating the social determinants of health, such as housing, employment and socioeconomic wellbeing.
Beyond the status quo
Soundfair CEO Dr Caitlin Barr, an audiologist and leading researcher in person-centred hearing care, described the report as “a conversation starter” and a platform to start questioning the status quo. She urged everyone to think of ways they might contribute, be that asking restaurant staff to turn down the music or fix the acoustics, or just to ask someone about their story.
Barr said Soundfair believes elevating many stories collectively and telling them in a purposeful way is motivation for collective action that can create a whole new lens and different ways for people to live in a fair world.
Speaking at the launch, the Minister for Regional Health, Regional Communications and Local Government, Mark Coulton, welcomed the report “as an important contribution to the ideas and discussion about how we can improve the experience of all people with hearing loss, and move closer to hearing equality”.
The Minister is himself one of the almost four million Australians (one-in-six) with a hearing condition.
Drawing on the stories of deaf Australians, the report advocates society-wide change – from cafes, to workplaces, and hearing services delivery – targeting ten priority areas for change:
- centring lived experience at the heart of decision-making and design
- placing consumers at the centre of service delivery
- investing in ongoing public health initiatives that embed the social determinants of health
- making hearing and acoustics standards mainstream alongside education for the design sector and awareness raising.
- investing in initiatives that focus on inclusion, not just ‘awareness’, to create a society that accepts and welcomes diversity in hearing.
- encouraging the evolution of technology that is informed by the consumer experience and increases their control over their experience of hearing.
- making the captioning of all free-to-air television broadcasting and emergency announcements mandatory and establish enforceable minimum standards for content providers, broadcasters and platforms.
- formally recognising Auslan as an official national language
- increasing funding for tinnitus services and research, and
- investing in specific, targeted and co-created programs for minority and disadvantaged populations.
System overhaul needed
The report calls for an overhaul of the hearing system, in particular the Hearing Services Program, saying it currently fits within the medical model, is device-centric and consistently misses opportunities to meet the diverse needs of people in Australia living with hearing conditions.
The report calls for more consumer choice and control, a bio-psychosocial approach, accountability and data, and access and equity.
It found the present system saw people waiting seven to ten years to action their concerns regarding their hearing, only to join a “conveyor belt of services that don’t allow for individual preference or needs”.
The report said people with hearing conditions are subject to sales and manipulation techniques – often in the absence or adequate information.
As well, many people who own hearing aids don’t wear them, there is little funding for and few services or support beyond hearing aids, and a lack of data is limiting targeted health promotion and improvement of interventions.
Most at risk
The report says some those with the highest prevalence of untreated hearing loss include Aboriginal and Torres Strait Islander people, the elderly, people from Culturally and Linguistically Diverse (CALD) backgrounds, veterans, prisoners and people in rural areas.
It says these groups can also suffer overlapping discrimination and marginalisation, with many Aboriginal and Torres Strait Islander people, veterans, and the elderly living in rural and remote regions with limited access to hearing services and reliance on telehealth and video diagnostic services (which can have accessibility barriers).
It says traditional institutional and government responses to high-need groups have been through specialised and ‘targeted’ programs and services, but it questions whether this addresses structural and systemic barriers, and calls for the development of programs co-created with communities.
The launch came just a few days after the World Health Organization released the first World Report on Hearing, finding nearly 2.5 billion people worldwide – one in four people – will be living with hearing loss by 2050.
The report found untreated hearing loss can have a devastating impact on the ability to communicate, study and earn a living, finding those in poorer countries where there is less access to services were more at risk.
Urging countries to integrate evidence-based interventions into their health systems as part of their journey towards universal health coverage, the WHO underlined the need to rapidly step up efforts to prevent and address hearing loss by investing and expanding access to ear and hearing care services.
A contributor to the report, Victoria Didenko, is quoted saying:
The hearing health system isn’t working. It is confusing, expensive, and cumbersome.
Millions of people in Australia are suffering and their lives are falling apart due to unaddressed, unsupported, unaffordable hearing health care and rehabilitation. The situation is dire.”
Above all, the HearMe Report is about listening to many diverse voices of lived experience: stories of discrimination and isolation in the workplace, inadequate access to signage and captions, shame about wearing hearing aids, anxiety in social settings, misunderstanding about different types of hearing loss, and poor educational experiences.
Keynote speaker Suzanne Waldron, a Perth-based behaviouralist with a Master’s degree in Coaching and Neuro-Linguistics, says society needs to see people with hearing conditions not as “people that need to be fixed” but as people we need to include.
“That’s the way they were born, or it happened through physical trauma. So, there is nothing wrong with them, but they are not catered for in a wider society.
“We need to be able to see through another person’s eyes or hear through another person’s ears and really consider and value other people’s perspectives.”
Waldron says our awareness needs to be about our perceptions of success, and that we will only realise our responsibility for equity when society moves away from profit-based goals.
And she says people who are deaf are some of the best listeners you can meet because they look at the speaker all the time, not wanting to miss anything.
“So, their intensity and their ability to be present is second to none. I think they see things in a different way – literally – and have the ability to go deeply into content and conversation. I think that’s something our whole community needs more of and I think that brings beautiful value.”
Soundfair CEO Dr Caitlin Barr spoke of her experiences as a young audiologist and becoming frustrated with a patient, Liz, who sought help about her hearing loss making work and social engagements more difficult – but was reluctant to wear her hearing aids.
In hindsight, Barr believes no-one was really listening to Liz, and that even though she believed she was doing her best as an audiologist, that her patient wanted something else.
“I was well trained, and I genuinely cared. But I worked in a system and lived in a society that didn’t really pay attention to what needed to be solved. Liz didn’t need to be fixed or solved and it certainly wasn’t just her problem that needed to be addressed”.
Barr said it was only after undertaking a PhD and listening to the many and diverse stories of lived experience that she understood that her role required more than knowing the level of hearing loss and how a hearing aid might help. She also needed to understand how individuals lived in their world, what they needed.
After COVID-19 shut down West End theatre, Piterman returned to Melbourne, where he successfully manages his tinnitus with meditation and stress relief techniques.
He backs the report’s call to increase funding for research and services for tinnitus sufferers.
The HearMe Report says tinnitus – which affects one in three Australians and is linked to a range of factors including ageing, acoustic shock and noise-induced hearing loss – can be devastating, increasing risk of depression, anxiety and even suicidal ideation.
“I think people feel very alone. I had a call from an opera singer who developed tinnitus in 2020 and it gave him so much comfort to know that another singer was experiencing this,” says Piterman.
“He didn’t know where to turn. I told him about a hearing clinic and meditation. He felt all he had was ‘Doctor Google’”.
In advocating the need for lived experience to drive societal change, the report outlines Soundfair’s commitment to providing a platform for storytelling and story sharing and engaging in a deep process of therapeutic individual and social change by creating a space for empowerment, recognition, and diversity.
“We also believe that without this profound shift to centre lived experience, systemic changes may not be sustainable – as they are not considering the core needs of those most impacted by the social problems at hand,” the report says.
“Therefore, many pathways for people with lived experience to be involved in policy development need to be created. This work will require commitment and investment across society.”
For Josh Piterman, it is important to share his story in the hope of helping others who may also have tinnitus, which will affect up to 70 percent of Australians at some stage in their lives.
Piterman says he got “very limited” advice from two Ear Nose and Throat specialists whom he consulted in London. It was only after visiting a tinnitus expert and using meditation and stress management that he is now at a stage where he “rarely notices” the condition.
When first diagnosed with tinnitus, Piterman questioned whether he could continue in his career, but he realised that tinnitus wasn’t who he was and wasn’t going to stop him.
Having performed in the UK and Australia since then, it hasn’t affected him, apart from having to tune into a piano or orchestra a bit more.
“I have to value my ears more so I wear moulded earbuds when I go to a concert or anything that could be loud. I give my ears the love they deserve rather than take them for granted”.
Piterman supports the report’s call for more research into and understanding of tinnitus and for more impartial, accessible and reliable information for consumers.
“We know that (tinnitus) is not necessarily a killer – although the mental health pain that people endure may result in that – but I don’t think we need things to be life or death in order for us to put money behind it and understand it more so people don’t have to endure the pain and the suffering.
“I want to make sure my story can be told and if it can help one or more people that would be beautiful.”
Keynote speaker at the HearMe Report launch, Suzanne Waldron spoke of visiting a nine-year-old child in a South African orphanage, a child who was deaf but had some British and American sign language.
Waldron – who was born in the UK – was able to use some sign language to communicate and, on one particular day, the child told her she felt beautiful because she was wearing blue.
The people who had cared for the child wanted to know what she had said and then asked for the word for ‘beautiful’.
When they then signed to the girl that she was beautiful, she crumbled to the floor crying because it was the first time they had been able to tell her this directly.
“That’s our job. To remind each other to create value from everyone. That’s what’s inclusion is,” Waldron said.
Journeys with art
Reinforcing the voices of lived experience, the launch featured an installation by Melbourne-based multimedia artist Kate Disher-Quill (who has a hearing condition).
This included audio/visual pieces and photography to take visitors on a journey into the lived experience of people with hearing conditions, including insight into lip reading, assistive technologies, Auslan and what it’s like to have tinnitus. (Read more here, in our preview story).
More from Twitter
Voices from the report
With hearing conditions — if we don’t have an inclusive society – the impacts are not just physiological, the impacts are emotional, they’re psychological, they’re social and we need to take this into account when designing strategies to support people to navigate it.” – Maxine P
I think people automatically assume people with hearing conditions are those who are completely Deaf and use sign language. And even that stereotype is of ‘Deaf’ as ignorant (deaf and dumb). I hate it. We need to show that people who are deaf, HoH or Deaf are not ignorant, but valuable members of society. But that stereotype also pushes away people who are not Deaf or part of the Deaf community or use sign language. Other people with hearing conditions feel invisible and left out by both the Deaf and hearing worlds. People with hearing loss who might identify as HoH or hearing impaired feel ‘torn between two worlds’. Their experiences are not covered enough. For example, it’s mostly about how well they do in audiology or with a cochlear implant, but not their diverse experiences. Some might feel close to their Deaf identity, some might not.” – Ayah
The devices lived in my mum’s drawer. I asked her why she didn’t like them, and she said that the person who gave them to her spoke to her like she was an idiot and just told her that these were the ones for her. She didn’t really have much say. She didn’t feel comfortable going back to the provider for any adjustments so she just put them away.” – Anne
When I first had my hearing loss diagnosed, the whole process was very mechanical – I was diagnosed with a mechanical issue that needed a mechanical solution. Having a discussion 20 years ago about the fact that this was something I was going to live with for the rest of my life and the impacts it would have around communication and self-image would’ve changed my life. If I would’ve known that early on, I would’ve been better prepared.” – Jack
Most of my schooling I was actually put in front of the class and the only problem with that was that all the kids all the other students in the class would be talking, creating background noise.” – Dale
I had a boss when I was working in local government that would come to me twice a day, whispering in an open-plan office. For ages I just nodded and said yes. At some point I told her I couldn’t hear her and asked if we could go to another room to talk. When we did, she still mumbled and covered her mouth when she talked. She just couldn’t change her habits.” – Jack
We operate in a society, and workplaces, designed for people who hear. Take fire alarms, for instance. If alarms are audio only and not accompanied by visual alerts, you may be dependent on other people to evacuate safely. During typical business hours, this loss of independence may be a compromise. However, this is raised as a work health and safety issue that limits one’s ability to access flexible working hours in the absence of trained peers being on hand to relay the evacuation tones.” – Gillian
Between 22 February and 13 March, 362 tweets were sent by 43 Twitter accounts using the hashtag #HearMe21, creating more than 3.8 million Twitter impressions, according to Symplur analytics. See some of the participants below, and read the Twitter transcript here.
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- Follow this Twitter list of participants to stay in touch with related news.