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Revelatory and resonant: fill your cup with the voices of lived experience

Introduction by Croakey: If you missed any of the six articles we published last week to coincide with Mental Health Week, be sure to take some time in the near future to dip into the Speaking Our Minds series, to read perspectives on the mental health system from people with lived experience of using it.

Below, Simon Katterl, who approached Croakey with the idea to privilege these voices and shepherded the series to publication, reflects on what he has learned from the stories and insights of the five unique writers featured in the series.

He also reminds us that public conversations are shaped as much by the people whose perspectives are missing as by those who get to speak.

Croakey looks forward to hosting more of these conversations, with a range of diverse voices, in the future.


Simon Katterl writes:

I’m often left depleted by this work – having the same conversations with the same (or different) people, maintaining the same systems…

New Zealand-based consumer/survivor advocate and friend, Mary O’Hagan, often reminds us of ‘the power of incumbency’ – the ability of systems to self-reinforce and maintain themselves.

I know these feelings of depletion, like my other experiences of distress and despair, are transitory. There are cycles of fear, distress, despair, optimism, thrill and hope that come with complex work that sails so close to your own experience and identity.

Rather than deplete my cup, this year, Mental Health Week helped fill it.

Working on the #SpeakingOurMinds project with the Croakey team as well as the expert writers, has been a privilege. I’ve learnt more – as I trust you have – about each of the writers and their unique contribution to our community and to changing mental health systems.

Simon Katterl

Lived experience and agents of change

Cassi Strauss’s article about working as a peer practitioner pointed us towards a way out of a narrowly defined mental health system that focuses just on assessment and treatment.

Others have been pointing and pushing us in that direction for twenty-two years, including Wanda Bennetts, whose article on consumer perspective work in mental health and legal settings illustrated the complex algorithms for generating change in institutional settings.

As I read Leilani Darwin’s article about racism in the system, I was reminded about how far we have to go, but how generous the spirit is, of First Nations leaders to walk with us as we learn.

Both Kerry Hawkins’ and Caroline Lambert’s articles embody the powerful change that carers want in the system, but also the toll that calls for change-making have had on them.

If you haven’t read the articles in this series, I encourage you to do so. I can’t stress enough the importance of all of the supportive organisations, as well as the work from Ruth, Melissa, Alison and Mitchell from Croakey.

Raising all voices

As I write, I’m conscious of the voices who have still been absent in the commentary surrounding mental health week.

Disabled and chronically ill people’s mental health seems invisible in public policy decisions to move to “post-COVID”. The uncritical releasing of all restrictions risks making their lives more nasty, brutish and short.

In a podcast earlier this year I spoke to two women, Jenny and Sarah (pseudonyms), about their experiences within Victoria’s prison settings. They described an institution of absolute surveillance and control, so spare a thought for Australians whose mental health is known to be worse than that of the non-incarcerated population but often ranks lowest in our public consciousness.

In Victoria, where changes to bail laws following multiple homicides in 2017 have made it more difficult for those arrested to obtain bail, First Nations women have been disproportionately impacted. These laws are driven in part, from my view, by mental health stigma.

Family violence survivors need to be part of conversations about mental health too.

Tess Moodie, who runs a victim-survivor media-advocacy and public awareness program (and is themself a victim-survivor), approached organisers of a Mental Health Week event in Tasmania to offer the voices of victim-survivor advocates. However, they say the organisers suggested that a family violence, rather than a mental health event, would be more appropriate.

I approached Tess after seeing their tweet, and understandably frustrated, they reminded us that,

despite the high rates of Post-Traumatic Stress Disorder (PTSD) experienced by victim-survivors, family violence is often viewed as a social issue and the mental health issues it creates is often not in plain sight due to shame and fear the victim-survivor may experience.”

It’s disappointing, they said, that “despite family violence being a major cause of anxiety and depression, conversations and awareness about it during Mental Health Week have taken a back row.” We can do better.

When we include the voices of lived experience, we are better for it as a community.

Listening to lived experience for a better future

Last Saturday I cried, laughed, and hugged my friends as I watched Honor Eastly’s live depiction of No Feeling is Final – her groundbreaking 2018 podcast on mental health and the system.

She repeatedly told the audience “how fucking hard” it was to explain her experiences, which makes sense, because she explained it in new and real ways that many of us with lived experience have struggled to find words for.

Seeing her and her wonderful team of her partner, friends and co-conspirators fills me with hope.

All the people mentioned here highlight injustice and opportunities. The injustices facing people with lived experience of distress from all different walks of life. And opportunities, that if we centre these voices, in positions of power and influence, they will help us create a healthier and more caring future.

*Simon Katterl has lived experience of mental health issues and has used predominantly private as well as community public mental health services. Simon’s work focuses on mental health laws, governance, regulation, and systems design.

For assistance:

Lifeline 13 11 14 www.lifeline.org.au

Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au

beyondblue 1300 224 636 www.beyondblue.org.au

13Yarn: 13 92 76  13yarn.org.au

1800RESPECT 1800 732 732 https://1800respect.org.au/

Kids Helpline 1800 551 800 kidshelpline.com.au

QLife: 1800 184 527 https://qlife.org.au/

Check-In (VMIAC, Victoria): 1800 845 109 https://www.vmiac.org.au/check-in/

Lived Experience Telephone Line Service: 1800 013 755   https://www.linkstowellbeing.org.au/


Acknowledgements

The #SpeakingOurMinds series of articles was conceived and organised by mental health and human rights advocate Simon Katterl and is edited by Dr Ruth Armstrong.

It is published to coincide with Mental Health Week 2022 (October 8-15) as a vehicle to privilege the voices of lived experience.

Bookmark this link to follow the series.

The series is supported by Mental Health Carers Australia, Simon Katterl Consulting, Tandem, First Nations Co, and Mind Australia. The supporters respect the independence of the authors and the editors.

On Twitter, follow #SpeakingOurMinds.