Reflections on the Consumer/Survivor/Ex-Patient (C/S/X) Movement in Western Australia

by Lyn Mahboub

Some people say Western Australia’s abbreviation, ‘WA’, means ‘wait awhile’. Certainly, at times it seems to take ages to do things here in Western Australia, but in other instances, due to our separateness, we can innovate creatively. Mental health consumer consultants, peer workers, and advocates certainly began earlier in the ‘east’ but, in time, these roles and initiatives did eventually trickle westwards. In this piece, I recount how my own inner advocate and activist emerged, and briefly note various initiatives I have been involved in during my almost twenty years of Lived Experience (Peer) Workforces roles, which form part of WA’s mental health C/S/X history. These initiatives offer a testament to just how those labelled ‘ill’ or ‘sick’ can actually challenge such framings, reclaim our ‘mad’ identities, and bring our lived experience learnings to the table alongside our allies to create contemporary initiatives.

In the 1970s, when I was 16 years old, I had my first experience with ‘psychosis’. Luckily, my small-town general practitioner (GP) asked me: ‘What is going on for you?’ rather than: ‘What’s wrong with you?’ I still recall, today, at age 62, the exact thoughts my 16-year-old-self had at the time: ‘Wow, how does he know that something is going on for me—that stuff has happened? I can trust this guy’. At that moment, I knew he really ‘saw’ me. He saw me beyond the spiders falling from the sky, beyond the dissociation, beyond the repeated sound of a glass smashing in slow motion, and beyond the terror, the self-loathing, my volatile outbursts, and the huge emotional moods that swung on a dime which I came to understand as ‘Kundalini awakening too quickly’ (Kundalini psychosis). His subsequent actions confirmed my assumption that he was trustworthy. He refused to pathologise me and normalised my situation instead. He believed that it is normal for humans to ‘break down’ if sufficient duress and pressure is exerted on them. He held the hope and belief that one could also ‘break-through’ if one receives the right type of response. I still recall the words he said to my mother: ‘Don’t worry, she is just having a nervous breakdown’. This reassured me and my mum. It qualified my experiences as something one could work through and heal from rather than as something calamitous announcing the end of the world. He asked me, even in this breakdown-befuddled state, what I needed. His strengths-based response prevented me (and my family) from seeing myself through a deficit lens with zero capacity and as ‘mentally ill’. Instead, his response sparked a tiny ember of hope, which, in time, led me to believe that I could get through this and embrace life.

Looking back, it is clear to me that my GP’s response to my ‘extreme state’1 was humane and trauma-informed. It averted me commencing a life of revolving doors in and out of psych services. Somehow, this country-town GP had a better response to my experience than one would receive in most modern, well-equipped hospitals with state-of-the-art psych wards. My life still led me on a merry-go-round of breakdowns, excruciating emotional distress, and pain that took me into and out of the drug culture (and required a lot of counselling and therapy), yet I can’t help contrasting my life to that of many of my other broken-feeling kindred spirits who received a very different response to their first experience of ‘psychosis’ which did not promote their recovery at all. Little did I know that I dodged a bullet—my experience taught me that there are alternative, compassionate, trauma-informed responses to distress. Later, I advocated and fought for such a response, because I knew what it looked and felt like.

My inner advocate and later activist had already awoken much earlier, when, as a five-year-old, I was subjected to and witnessed evil catholic cruelty. This formative experience forged my inner ‘rebel, bully basher-advocate’ self. It was only during my two in-patient hospitalisations many, many years later that my mental health ‘survivor mission’ was born. Although I was feeling ‘mad as a hatter’ and distressed beyond measure, I vividly recall being deeply perplexed by many of the staff’s punitive, authoritative responses, which seemed to lack empathy. ‘Care’, although existing in small pockets, was very thin on the ground, and healing responses were completely absent, in contrast to the many years I had spent in ‘alternative’ therapeutic spaces where ‘healing’, ‘processing’, and ‘recovery’ was very present.2 The care we received was primarily what we ‘patients’ provided to each other, but also from the rare clinician who offered reassurance, helped us normalise our experiences, and taught us grounding and coping strategies (I even encountered one amazing soul who offered me some Reiki on the quiet). This dearth of care was also in sharp contrast to what I was taught during my nursing training, which was all about deep empathy, deep listening, and understanding behavioural triggers. The contrast between what I experienced as a psychiatric patient and my empathy-rich nursing training inspired my survivor mission in training and education, focusing on sharing lived experience-based learning, primarily targeting mental health professionals and students.3

This mission was further encouraged during my studies in psychology, during which I had two hospitalisations. In the early 2000s, I was taught by critical psychologist Mark Rapley, whose teaching was inspired by community and critical psychiatry and psychology along with ‘mad studies’.4 Mark taught us about the work of voice hearer and thought leader Ron Coleman, founder of the Hearing Voices Movement, Professor Marius Romme, and critical psychologists Craig Newnes and Professor Mary Boyle, among many others.5 I discussed my own experiences for the very first time in this class, and, in time, was invited to do so in other classes and at symposia (even tutoring in some units). Mark’s belief in the importance of lived experience voices within academia contributed to the formation of my identity as a ‘lived experience academic’; a role I still occupy today.

At this time, I did not know about the work others were doing as a part of the C/S/X movement in Perth.6 When, in 2003, the Consumer Consultant Trial (CCT) was initiated, this changed. I joined a handful of my peers as WA’s first ever consumer consultants7 and commenced learning on whose shoulders we were standing. The CCT team was employed by the WA Health Consumer’s Council and seconded to the South Metropolitan Area Mental Health Service to advise and consult but also to conduct a consumer evaluation through a series of in-patient and out-patient forums across the six geographical regions of the service area: Fremantle, Bentley, Armadale, Rockingham, Kwinana, and Peel. The result appeared as a comprehensive report with recommendations.8

Around the same time, a group of consumers had been meeting to form a consumer organisation modelled on the Victorian Mental Illness Awareness Council (VMIAC). Several of us local consumers became co-founders of the West Australian Mental Illness Awareness Council (incorporated in 2005), which continues today as a thriving advocacy organisation called Consumers of Mental Health WA (CoMHWA).

Around this time, the HealthRight Project marked the first time that frontline mental health peers emerged.9 Whilst they were only allowed to assist with the physical health issues of consumers, it paved the way for organisations to employ peers to work with mental health consumers beyond physical health. The focus on physical health was due to the general health discrepancies between consumers of mental health care and others highlighted by the influential Duty to Care report10 along with long term advocacy by consumer elders.11 My involvement culminated as a reference group member, along with Anne Bates (project lead), Viv Kemp (peer-researcher), Margaret Cook, and others.

In 2005, Ron Coleman visited Perth. I was enthralled by his powerful oratory. His deep wisdom and artful eloquence made him what I call ‘a permission and encouragement machine’. Ron inspired several clinicians to connect to their original intention at the root of their helping professions, so often superseded by risk-averse and service-centric practices. He inspired and mobilised many consumers on their recovery and activist journeys, me among them. I, like several other consumers and service providers, could not resist the clarion call to start a Hearing Voices Network in Australia. This initiative needed ‘door openers’ and allies that say ‘yes’. For me and my peer Jen Stacey, who was similarly galvanised, this was Joe Calleja, the brand-new CEO of Richmond Fellowship WA. It was Joe’s tenacity and leadership that enabled Jen and I to co-lead the Hearing Voices Network Australia Development Working Party, which was made up of consumers and mental health professionals who were determined to stand up and be counted.12 These clinicians inspired us to believe in our own expertise and knowing which, in turn, built our self-confidence. For the first time in WA (maybe Australia as a whole), voice hearers were engaged by a non-government organisation as peer workers. Jen and I, as service users, were breaking new ground as well by occupying brand new volunteer and, later, paid peer roles. This was done while figuring out how to draw on our lived experience at a time when there was no training for and experience with employing peer workers in WA. We were figuring it all out together while co-building ‘Hearing Voices Network Australia’ (HVNA).

This was a real example of collaboration and co-design utilising lived and living experience expertise as well as expertise by profession. Joe’s skills enabled funding from the Myer Foundation, which aided our eastern states voice hearer leaders and interested allies to visit WA for mutual sharing of wisdom, training, and networking.13 All this activity led to three state-based networks springing up (in WA, New South Wales. and Victoria). Simultaneously, local WA LotteriesWest funding enabled the HVNWA to develop Hearing Voices Groups and bring in international expertise via a series of symposia, conferences, and workshops. One was the powerful Recovery from Psychosis Conference, held in Perth in November 2008. This three-day conference was followed by the International Hearing Voices Congress Intervoice Downunder, which was the first time such a gathering had been held in the Southern hemisphere. At this two-day congress many Hearing Voices Networks from around the world were represented, bringing voice hearers and HVN managers and leaders to network and share ideas and successes grounded in the Hearing Voices Approach.

In 2010 I gained a lived experience academic role in Curtin University’s School of Occupational Therapy & Social Work.14 Over time myself and Dr Robyn Martin co-designed the Valuing Lived Experience Program (VLEP).15 This program aims to meaningfully embed the voices of people with lived experience of mental distress, substance use, trauma, and use of health and community services into the education of students, academics, and professionals within our school. Both Robyn, and the now current VLEP co-lead, Dr David Hodgson, have worked with me to keep opening doors for lived experience voices who undergo this unit of study to become a lived experience educator (LEE).16 Graduates of the LEE Unit then form part of a pool of lived experience educator sessional tutors who co-teach, co-mark, and co-design some parts of curricula in our school.

I have also been fortunate to witness the establishment of WA’s Recovery College from its grass roots beginnings, which was the outcome of a ten-year journey of advocacy.17 This extraordinary initiative was led by family member advocate Pam Gardner, along with myself and Kerry Hawkins, and involved many others. The WA Recovery College Alliance’s mission is to provide educational pathways for anyone to learn and connect in order to build their resources of ‘citizen and recovery capital’ to enable a quality life. It ‘aims to create opportunities for anyone in the community looking to connect, explore and transform’.18 A key feature of the college is that all courses are co-produced with someone with a lived and/or living experience of mental health recovery.

One final initiative I have had the privilege to be involved in, in its later years, is Recovery Rocks Community Inc (RRCi), which was the survivor mission (brainchild) of peer leader Amanda Waegeli, who established it in her own living room in January 2012 and ran it for 7 years.19 RRCi’s vision was ‘to foster a peer led and peer run mental health recovery community’ with the purpose ‘to strengthen our diverse community through peer support and lived experience of mental health recovery’.20 Whilst RRCi succumbed to the ‘bureaucratic burdens’ placed on small incorporated and unfunded organisations and the impact of COVID-19, it was significant in that it was, at the time, WA’s only mental health peer-run community. It clearly demonstrated how such endeavours can achieve great results.21

The history of the C/S/X movement initiatives described here are only a small number that I have been directly involved with.22 Such initiatives are driven by ‘heart and courage’, along with the channelling of our outrage at the continual harms done to vulnerable and distressed people in the service of creating new and innovative ways such as those described in the Power, Threat, Meaning Framework (PTMF). Reflecting on this, reportedly ‘new’ framework brings me full circle, to my experiences with a small-town GP who seemed to know intuitively that a kind, empathic but curious response was needed. The PTMF seeks to ask similar questions as my GP: ‘What has happened to you?’, ‘How did it affect you?’, ‘What sense did you make of it?’, and ‘What did you have to do to survive?’23 I remain curious as to why such non-pathologising responses still seem so rare, even today. It is frustrating to know that there are so many effective approaches, including those developed at Soteria House, in Open Dialogue, Alternatives to suicide (Alt2Su), and the Hearing Voices Approach. Alas, such innovative, contemporary models are all too often pushed into the margins due to dominant models such as the bio-medical and clinical approaches that are resistant to change and repeatedly re-constituted. This point was captured quite nicely by Matthias Seibt, a service user from Germany who stated, after forty years of activism: ‘Everything has to improve. But nothing is allowed to change’.24 I certainly share Matthias’ frustrations and ponder here and elsewhere ‘do we need revolution or is evolution OK to settle for?’25 But also, I am encouraged by the will of my lived experience peers and our allies who keep standing up again and again raising their voices despite the common experiences of microaggressions and epistemic injustice and knowing the emotional labour that takes its toll. We ask that those in power take time to pause and instead of talking, ask us questions. Indeed, I concur with long-time member of the hearing voices movement, trainer and speaker Arana Pearson, who has said ‘questions are the answer’.26

Lyn Mahboub has worked in Lived Experience (Peer) workforce roles for nearly 20 years. Currently she is a Lecturer, Lived Experience Academic, and co-lead of the Valuing Lived Experience Project within the School of Allied Health at Curtin University and owner/director of her own training and consultancy business. She has held diverse roles such as the inaugural Director of the Hearing Voices Network Australia, and Program Manager of Recovery Training for Richmond Fellowship.

This reflection first appeared in Health and History 24, no 2 (2022): 144-151.

Notes

1. This is a term used in the C/S/X movement to offer an alternative non-medical term for psychosis, which indicates the presence of diverse explanatory frameworks of which the medical or illness model is just one explanation. It recognises the hundreds of altered states that humans might experience, ranging from hilarity, to nightmare, trance, to white line fever, ‘dissociation’, and ‘psychosis’ and everything in between.

2. This involved healing circles, healing the inner child, healing trauma and abuse via cathartic work, anger work, energy work, body work, and much more.

3. Kate P. Dorozenko, Sophie Ridley, Robyn Martin, and Lyn Mahboub, “A Journey of Embedding Mental Health Lived Experience in Social Work Education”, Social Work Education 35, no 8 (2016): 905–17; Lyn Mahboub, Robyn Martin, and David Hodgson, “A Program for Valuing Mental Health Lived Experience in Social Work Education”, Australian Social Work (2022): 1–15.

4. Ewen Speed, Joanna Moncrieff, and Mark E. Rapley, De-Medicalizing Misery II: Society, Politics and the Mental Health Industry (Cham: Palgrave Macmillan, 2014).

5. Ron Coleman, “Hearing Voices and the Politics of Oppression”, in This is Madness: A Critical Look at Psychiatry and the Future of Mental Health Services, edited by Craig Newnes, Guy Holmes, and Cailzie Dunn (Ross-on-Wye: PCCS Books, 1999), 149–63; Craig Newnes, Guy Holmes, and Cailzie Dunn, eds, This is Madness Too: Critical Perspectives on Mental Health Services (Ross-on-Wye: PCCS Books, 2001); Mary Boyle, Schizophrenia: A Scientific Delusion? (London and New York: Routledge, 1999); Dirk Corstens, Marius Romme, and Sandra Escher, “Accepting and Working with Voices: The Maastricht Approach”, in Psychosis, Trauma and Dissociation: Emerging Perspectives on Severe Psychopathology, edited by Andrew Moskowitz, Ingo Schäfer, and Martin J. Dorahy (London: Wiley, 2008), 319–32.

6. Earlier efforts include the Health Consumer Council’s Mental Health Advocacy Project, which ran for around 7 years, and the Association of Mental Health Consumers, W.A.’s first consumer-run organisation, which was supported by the W.A. Mental Health Association.

7. These included the former Bruce Ambrosius, Juanita Fishwick, Lorraine Powell, Harriet Sawer, and Norm Kitson.

8. Bruce Ambrosius, Lyn Mahboub, Lorraine Powell, and Harriet Sawer, Consumer Consultant Trial Recommendations Report: A Review of South Metropolitan Area Mental Health Services: A Consumer Perspective, June 2004–June 2005 (Perth: Health Consumer’s Council, 2005).

9. Vivien Kemp, Colleen Fisher, Sharon Lawn, Malcolm Battersby, and Mohan K. Isaac, “Small Steps: Barriers and Facilitators to Physical Health Self-Management by People Living with Mental Illness”, International Journal of Mental Health Promotion 16, no. 4 (2014): 216–30; Vivien Kemp, Ann Bates, and Mohan Isaac, “Mental Health Consumers as Peer Supporters in Western Australia”, Health Issues 96 (2008): 23–7.

10. D. Lawrence, C.D.J. Holman, and A.V. Jablensky, Duty to Care: Preventable Physical Illness in People with Mental Illness (Perth: University of Western Australia, 2001).

11. This work had a long history and came out of the advocacy of Margaret Cook, Ginger Gordy, and Pauline Miles to name a few.

12. Inaugural chair Jen Stacey, along with Lyn Mahboub, Dr Mike Wise-Miller, Paula Edwards, Virginia Pulker, Georgie Paulik-White, Warwick Smith, Helen Vlais, Sheree A., Hollie B., May G., Sanna, Dean B., Chris P., and Will H., with Joe Calleja as CEO.

13. Involved were Douglas Holmes, Indigo Daya, Sandy Noble, Harriet Dance, and Jacqui Stewart, as well as several others.

14. Today, this is the School of Allied Health.

15. Lyn Mahboub, Robyn Martin, and David Hodgson, “A Program for Valuing Mental Health Lived Experience in Social Work Education”, Australian Social Work (2022): 1–15.

16. This Unit was co-deigned with LEX.

17. Jay Leighton, Bruce Macadam, Pamela Gardner, and Lyn Mahboub, “Hope Headquarters: Recovery College”, Health Promotion Journal of Australia 28 (2017): 170–3.

18. “The W.A. Recovery College Alliance,” https://warecoverycollege.org.au/ (accessed 20 Nov 2022).

19. Amanda Waegeli, “The Recovery Rocks Community Story”, Mental Health and Social Inclusion 18, no. 2 (2014): 61–7.

20. Ibid.

21. For a list of clips on the various endeavours of RRCi see Recovery Rocks Community, https://www.youtube.com/channel/UCnexYVZY_E0bKE3Zxpnkfug/videos (accessed 4 January 2023).

22. For slightly larger overview of W.A. historical activities see Lyn Mahboub, “The World According to Me: A Western Australian Peer Work Journey, Some History, Reflections and Thoughts”, in Peer Work in Australia: A New Future for Mental Health, edited by Janet Meagher, Anthony Stratford, Fay Jackson, Erandathie Jayakody, and Tim Fong (Sydney: RichmondPRA & Flourish Australia, 2018), 202–15.

23. Lucy Johnstone and Mary Boyle, with John Cromby, Jacqui Dillon, David Harper, Peter Kinderman, Eleanor Longdon, David Pilgrim, and John Read, The Power Threat Meaning Framework (PTMF) (Leicester: British Psychological Society, 2018), https://www.bps.org.uk/member-networks/division-clinical-psychology/power-threat-meaning-framework (accessed 20 Nov 2022).

24. Jasna Russo, Peter Beresford, and Mary O’Hagan, “Commentary”, Journal of Mental Health Nursing 27, no. 6 (2018): 1877–8.

25. Lyn Mahboub, “Local Activism: Change through Rebellion and Insurrection or Collaboration and Co-Production?” Clinical Psychology Forum 318 (2019): 24–5.

26. Personal Communication during Hearing Voices That Are Distressing - A Simulated Training Experience (module 1) (Sydney, 2005).