As well as celebrating the work of mental health consumers in services, policy, research and the broader community, this year’s Victorian Mental Illness Awareness Council’s (VMIAC) awards added a new category, to honour the allies “who get us”.
Marie McInerney writes:
Melbourne mental health peer worker Janet Karagounis has been hearing voices since she was a child but they became more negative in her 20s after she was involved in a motorbike accident.
Diagnosed with chronic schizophrenia, she found herself caught in the “revolving door” of clinical psychiatric treatment, with a sense of no hope and no future, including no chance of ever having fulfilling, meaningful work.
“I was told it was a lifetime disease and there was no turning back,” she told Croakey.
But Karagounis found a way ahead and, now in her 50s, was recently awarded the Lifetime Achievement Award from the Victorian Mental Illness Awareness Council (VMIAC) for her “inspirational and instrumental” work in the Hearing Voices movement and peer workforce in Victoria.
“She has inspired hundreds of voice hearers, carers and mental health workers with her personal recovery story and leaves a lasting impact wherever she goes,” VMIAC said.
A radical shift
Karagounis told the VMIAC awards ceremony that the breakthrough came when she attended a conference about ten years ago and was introduced to the Hearing Voices approach developed from ground-breaking work in the Netherlands by Professor Marius Romme and Dr Sandra Escher.
Romme and Escher advocated for a radical shift in understanding the phenomenon of hearing voices, away from seeing ‘auditory hallucinations’ as caused by biochemical and genetic factors and towards understanding them as a meaningful response to life events.
As part of their research, they found that 70 per cent of the 700 adults they surveyed in Holland had started hearing voices after a traumatic life event and that encouraging people to talk about these voices helped them to understand how the voices related to their life history.
Karagounis says this acceptance that the voices are real is at the heart of the Hearing Voices approach that turned her life around and informs her work as the Group Network Coordinator of Voices Vic, a statewide specialist program at Prahran Mission led by people with lived experience, which seeks to improve the lives of people who hear voices. She said:
They’re real to you, you hear them.
It’s not about getting rid of the voices, it’s about changing the relationship one has with the voices, so you can lead an active life.”
For example, Karagounis still hears the voices making comments like ‘you should shut your mouth’, but she hears them differently now:
I smile at that now, it makes me laugh rather than be worried.
You work on your self-esteem, your self-acceptance, your self-belief, it’s about the ‘self’ words.
I can actually work with my voices, not fight against them.”
The hearing of a voice or voices inaudible to others is a relatively common human experience, experienced by 10-15 percent of people at some time in their life, according to groups like the International Mental Health Collaborating Network.
Despite this, researchers say, many people, including health-care professionals, still regard hearing voices as a “first-rank” symptom of schizophrenia and assume that these voices are experienced as “negative, commanding, loud, frequent and coming from outside the head”.
Peer support for voice hearers
John Read, Professor of Clinical Psychology, University of East London, has written that an exciting development in the last two decades is the emergence all over the world of peer-support groups for voice hearers, like Voices Vic. He said:
The members of these groups have much to teach us mental health professionals, especially about how to listen respectfully, and search for meaning, rather than dismissing people’s experiences as symptoms of an imagined illness which has no reliability or validity and trying to suppress those experiences with psychiatric drugs.”
Voices Vic says it’s hard to think of an experience that is more misunderstood or stigmatised than hearing voices but it says while some people do find hearing voices confusing or frightening and seek help to cope with them, many more find them helpful, sacred or just a normal part of life.
In the early days of her recovery, as she learnt to have a different relationship with her voices, Karagounis says her aims were relatively low.
She wanted to lower her medication dosages – “I was a walking zombie”, she said of the level of medication she was prescribed.
“You can’t medicate against your personality, so it’s bit like, ‘just let us be a bit odd’,” she said.
And she wanted to get a job, perhaps in a supermarket. So when offered a job as a peer worker at Voices Victoria, she was worried she might not be able to manage the eight hours a week it then entailed.
Her soon-to-be boss said, ‘give yourself six months and you’ll be screaming that that’s not enough’.
“How true that was,” Karagounis said.
Since then, she has gone from being afraid to answer the phone to speaking in public statewide and nationally:
In peer work I’ve found meaning and purpose, a true passion.
But the greatest gift of all is I get to walk alongside on part of people’s journeys.
No money, no award, no nothing can give you satisfaction (like) walking alongside someone who has been tormented by the voices and turns around and says ‘I’ve got a future outside my voices’. It’s gold.”
The shadow on the horizon now is the National Disability Insurance Scheme (NDIS).
Its rollout in Victoria is in part funded by the defunding of Victoria’s once renowned mental health community support services, which the sector fears may mean that 90 per cent of Victorians living with severe mental illness will be worse off under the NDIS.
“People are losing their jobs, people who are experienced and have worked in the field for quite a while,” Karagounis said. “It’s quite a scary time at the moment.”
Watch this interview with Janet Karagounis:
Watch Voices Vic videos of other people’s stories of hearing voices at this link.
This year’s VMIAC Awards launched a new category to acknowledge and honour the work of allies who, VMIAC CEO Maggie Toko said, “don’t do it for us, they do it with us and they make sure we’re out in front, they stand by us”.
The winner of the inaugural VMIAC Lifetime Ally Award was Professor Brenda Happell, a registered nurse with specialist qualifications in mental health nursing, who was the inaugural Director of the Centre for Psychiatric Nursing (CPN) at the University of Melbourne.
She was in that role when she was invited, “more by good luck than good management”, about 20 years ago to be part of Deakin University workshops aimed at involving mental health consumers in the education of health professionals.
“I have to say that has been one of, if not the most profound experiences of my academic career,” she said. “It sounds a bit cliched, but I left there a changed person. It pretty quickly became my life’s passion”.
She looked from then to create transformational change at the CPN.
“The easy thing was to have consumers involved in our (academic) course committee, which we did, but I always had sense that that wasn’t enough, that we needed to have an opportunity for consumers to be much more actively involved in the education of our nurses.”
That thinking led to the creation of the first recognised consumer academic position in the world, and to the employment of internationally respected consumer researcher and teacher Cath Roper, at the CPN, which declares its “belief that the consumer perspective is an academic discipline in its own right, with application to research and education activities”.
(Roper won the inaugural 2016 VMIAC Lifetime Achievement Award. You can read here about how she has worked through research to put an end to the types of horrific treatment and indignities she experienced as a mental health patient two decades ago.)
Happell remembers some resistance at the time, including from tertiary bureaucrats who quibbled over whether or not the successful applicant would need to have their Masters. Ultimately they were persuaded, she said, that “this is cutting edge, nobody else has ever done this before.
“After all universities should be about innovation rather than arbitrary rules and regulations,” she said.
She said she’s never seen any resistance from students – on the contrary, the input from consumer academics has a “profound” impact on them, she says.
“The only resistance I’ve ever seen has been from health professionals, who may be threatened by it, by the difference in power relationships, when suddenly a consumer becomes a colleague rather than someone ‘you look after’,” she said.
“For decades mental health nurse academics have looked for ways to increase students’ interest in mental health nursing. By far the greatest change has occurred through consumer academic roles,” she said.
“If Schools of Nursing are serious about the mental health nursing workforce of the future, consumer academics must become part of the team.
(See this Issues Paper written by Happell which suggests consumer involvement in the education of health professionals is likely to realise clear benefits and identifies major barriers that need to be addressed if consumer academic positions are “to grow and be sustained”.)
Since Happell’s pioneering days at CPN, consumer participation in mental health education has grown, although much slower than she would prefer.
That critical mass is vital for providing the safe and welcoming environment needed for consumer academics and researchers, according to Associate Professor Bridget Hamilton who is the current CPN director and was also honoured by VMIAC as Ally of the Year.
“The thing we know from the consumer movement, in every sphere, is that it’s not great to have only one person. It’s pretty exposed… so nobody really wants too much of that in their career,” she said.
Tips for allies
Asked what makes a good ally, Happell said it is to facilitate and support, not to interfere with content.
Happell is often asked to “come and give a consumer perspective” to various groups or discussions, and firmly makes that point that she cannot do this.
“I think it’s really important to hold that ground and say ‘I’m an ally, I can talk to you about what it’s like to be an ally, I can talk to you about how valuable I’ve found consumer expertise to be … but I can’t tell you what it’s like to be a consumer, or to provide a consumer perspective.”
Her motto is: “I do what I can but I know my place.”
“It’s very important to have those boundaries very clear.”
Hamilton sees her role as an ally is “to just get the other stuff out of the way so that people can do what they are absolutely desperate to do which is to talk about the guts of the work and the really important things that need to change”.
She believes the least she can do from the privilege of having a secure academic position is to be prepared to do “some of the tedious things” so that others, who are not as secure, can work on the “things they’re passionate about”.
“So, as much as possible, I try not to let people run up against the barriers we know are there. I try to anticipate them or get them out of the way as soon as possible, so people can get on and do the things they’re very good at.”
Watch this video with Happell and Hamilton at the awards:
Watch also this interview with Sam Ryan from Eastern Health, one of Melbourne’s largest public health services, who won the Consumer Worker of the Year (Clinical) award.
He talks about being involved in a Testimonial Space Trial piloted at the Upton House facility for both voluntary and involuntary patients, part of the service’s commitment to the “reduction and where possible elimination of seclusion and restraint”.
See also this video – ‘Don’t come back Jack‘ – outlining the collaborative recovery focused approach to the work at Forensicare, whose consumer advisory group was also an award winner, cited also for its work on the Breathe Easy smokefree initiative.
You can also watch the videos below with VMIAC CEO Maggie Toko and Human Rights Advisor Indigo Daya about the awards and VMIAC’s priorities for the upcoming Victorian state election.
Their three key issues of concern are:
- The need to address serious physical and psychological harms experienced by mental health consumers in Victorian mental health hospital units.
- Urgent, large scale action to address sexual harassment and assault experienced by people admitted to Victorian mental health hospital units, outlined in the “damning” report – The right to be safe: ensuring sexual safety in acute mental health inpatient units – from the Mental Health Complaints Commissioner.
- Urgent action to address where people with psychosocial disability are being locked out of the NDIS, and the community support sector has been decimated.
And you can watch this powerful interview with Alan, who talks about the hurt that mental health patients can experience in hospital and the under-recognised impact of poor physical health on people managing mental health issues.
Another eight videos will be added to VMIAC’s YouTube channel in the leadup to the November 24 poll.
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