A statement on the state of mental health “reform” and the value of lived experience
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A statement on the state of mental health “reform” and the value of lived experience

Written by Ailsa Rayner
A System Built on Unequal Terms
There is a fundamental dishonesty running through the Australian mental health system – and, by extension, through every forum, conference, roundtable and policy platform that claims to centre “lived experience.” It is a dishonesty everyone inside the sector recognises and few are willing to acknowledge out loud: some people get paid for their expertise, and others – often those who have been harmed, detained, silenced or stigmatized by the system – are expected to contribute for free.
This is the quiet economy beneath the glossy language of reform.
It is the reason change is so slow, why culture shifts stall, why “co-design” is repeatedly captured by professional interests, and why lived-experience leadership is tokenized more often than empowered.
In this political statement, I want to name the dynamics that many experience but almost no one in authority admits: the system exploits the vulnerability created by psychiatric history and institutional stigma; rewards insiders; and extracts unpaid labour from survivors under the guise of inclusion. Until that inequity is dismantled, nothing approximating human rights-aligned reform can occur.
This is not an abstract debate. It is a struggle over power, legitimacy and material resources – and over whose knowledge gets to shape the future of mental health.
For those with psychiatric histories, society has constructed a permanent suspicion – a presumption that our testimony, our memory, our emotional responses, and our interpretations of events are inherently unreliable. This manufactured doubt does not fade with time or recovery; it becomes a tool wielded by those who wish to maintain power.
This is the structural vulnerability that nefarious actors – individuals, institutions, bureaucracies – exploit. Not a vulnerability of character, but a vulnerability imposed by decades of medicalised stigma and discriminatory laws.
When a person with lived experience challenges coercion, raises concerns about policy, or calls out injustice, organisations can retreat behind a familiar escape hatch: dismiss them as “emotional”, “biased”, “unstable”, or “too close to the issue”. Meanwhile, clinicians or consultants voicing identical criticisms are labelled “thought-leaders”, “innovators”, or “change agents”.
The double standard is not accidental. It is a political tool – a method for controlling whose voices are taken seriously and whose are considered optional.
This is why payment becomes the fault line.
Those whose voices are devalued are the ones most often unpaid, or poorly paid.
Walk into any major conference in Australia – government branded “co-production” forums, “emerging priorities” meetings – and you will witness a caste system disguised as collaboration.
Even when paid, the amounts are often symbolic – a fraction of what other experts receive for equivalent intellectual labour. Many lived-experience contributors report being asked to waive fees to “support the sector,” while no such expectation is imposed on clinicians or executives.
This is not just unfair.
It is politically revealing.
It shows whose knowledge is treated as professional and whose is treated as voluntary confession. It shows whose presence is considered necessary and whose is considered decorative. It shows who is economically supported to remain in the conversations and who is financially worn down until they leave it.
And it raises a fundamental truth:
You cannot claim to value lived experience while excluding it from the funded economy of reform.
Within the lived-experience movement, two strategies have coexisted – sometimes collaboratively, sometimes in tension.
The Diplomatic Strategy
Calm voices in meeting rooms.
Incremental gains.
The slow work of persuasion and partnership.
Negotiating with government stakeholders.
Building relationships with clinical allies.
Producing frameworks, guidelines, and gentle invitations to rethink deeply embedded practices.
This strategy has its benefits. It can open doors. It can shift language. It can create institutional pockets of progress. But diplomacy is often hostage to respectability politics – to being “reasonable”, “constructive”, “manageable”, and “not too angry”.
Yet anger is not pathology.
It is evidence.
The Activist Strategy
Strident truth-telling.
Direct critique.
Naming abuses plainly.
Refusing to dilute the reality of coercion, harm, discrimination, and systemic violence.
Calling for abolition of forced treatment, not tinkering.
Aligning with global human rights movements, not clinical comfort.
Activists push the window open.
Diplomates stabilize it so more can climb through.
Both are necessary.
But institutions consistently reward the diplomatic style – because it is easier to control – while marginalising those who speak with urgency and political clarity.
And here again, payment reveals allegiance:
Activist voices are the least likely to be paid, because they challenge the terms of engagement itself.
Australian mental health policy repeatedly references human rights while designing systems that violate them. The CRPD (Convention on the Rights of Person with Disabilities) is clear: involuntary treatment, substituted decision-making, and detention on the basis of disability are human rights violations. OPCAT (the Optional Protocol to the Convention Against Torture) requires scrutiny of institutional environments where people are deprived of liberty or subjected to coercion.
These Conventions, taken seriously, would force a radical restructuring of mental health law and practice. They would mover the sector from “risk management” to rights protections from clinical paternalism to supported decision-making, from locked wards to community-based alternatives, from “capacity” tests to underversal legal personhood.
The system knows this.
That is why human rights language is embraced rhetorically but resisted operationally.
Lived-experience researchers and survivor-led academics who invoke CRPD and OPCAT often find themselves excluded from working groups, deemed “too political” or “not aligned with service realities.” Meanwhile, organisations adopt diluted “rights-based principles” that maintain biomedical dominance and coercive discretion.
Payment patterns follow these politics:
Projects aligned with mild reform attract funding;
Projects aligned with genuine rights-based transformation do not.
Over the last decade, Australia has witnessed rapid growth in lived experience positions: consumer consultants, peer workers, co-design specialists, lived-experience academics. On paper, this is progress. In practice, many of these roles are tightly constrained, depoliticised, and expected to align with organisational interests rather than challenge them.
A peer worker who questions coercive practices risks being labelled “unprofessional”.
A consumer academic who highlights systemic abuse risks losing research opportunities.
A lived-experience adviser who critiques a policy direction risks not being invited back.
This conditional inclusion guarantees one thing:
Only the moderate voices get paid.
Meanwhile, those raising critical analysis – about forced medication, trauma from psychiatric detention, polypharmacy harms, racism in mental health responses, police involvement in crises, or the political economy of the sector – are treated as a risk to “sector cohesion”.
In other words, the system wants lived experience,
But only if it behaves.
Internationally, lived-experience and survivor-led research is accelerating.
In the UK, New Zealand, Europe and North America, entire academic programmes are emerging led by people with lived experience. Survivor research groups are producing work on medication withdrawal, coercion harms, alternative to emergency responses, and abolition of involuntary treatment. These are recognised fields.
Australia is lagging – not due to lack of talent, but because the political and funding environment suppresses anything that threatens the biomedical status quo.
In global fora:
Australia’s quiet, bureaucratic culture of reform cannot hold indefinitely.
International pressure – particularly through CRPD monitoring – is building.
And grassroots lived- experience networks are growing restless.
Perhaps the most politically revealing dynamic is the culture of invitation: the idea that survivors and lived-experience leaders should feel grateful to be included at all. That an invitation to speak, consult or contribute is itself a form of compensation.
This dynamic is steeped in paternalism.
It reproduces the same power relations that shaped the psychiatric system itself.
The person who has been harmed is expected to be grateful.
The person who maintains the system is treated as generous.
This is not inclusion.
It is curated exposure – a performance of openness that leaves the core of the system untouched.
True inclusion is not based on selective invitations.
It is based on redistribution of power:
Resources, authority, paid roles, decision-making control.
Until then, participation remains conditional, not structural.
Here is the simplest, sharpest version:
This is the truth governments avoid:
Paying lived-experience leadership equitably would rearrange the power map of the entire mental health sector. It would shift research priorities. Redirect funding. Challenge clinical dominance. Strengthen rights-based advocacy. Empower resistance. And accelerate demands for the end of coercion.
This is precisely why payment remains inconsistent.
Let’s be clear:
This is not a request for polite revisions or better etiquette at conferences.
This is a demand for structural change:
This is not radical.
This is what human rights compliance looks like.
The gap between rhetoric and reality in Australian mental health is widening. Every time lived-experience contributors are underpaid, unpaid, or selectively included, the system reveals its priorities. Every time psychiatric history is weaponised to discount someone’s perspective, the system reinforces discrimination. Every time human rights are referenced but not enacted, the system betrays its own stated values.
But here is the optimism – not sentimental, but strategic:
Movements grow not when institutions embrace them, but when institutions fail to silence them.
The lived-experience movement in Australia is at a turning point.
The days of grateful compliance are ending.
The quiet diplomacy is giving way to sharper truths.
The unpaid labour that propped up “co-design” for years is being recognised for what it is: exploitation.
A new phase is emerging – one that refused the invitation-only economy of reform and demands structural transformation grounded in rights, dignity, justice, and equity.
And the message to the system is simple:
If you want our expertise, pay us.
If you want our leadership, support us.
If you want change, share power.
If not, we will build the future without your permission.
About the writer

Driving systemic change through lived experience, advocacy, and grassroots reform.
I am a passionate advocate, systemic change-maker, and lived experience leader dedicated to reimagining mental health systems. With a career spanning regional, rural, and remote communities across Australia, I bring a deep understanding of diverse mental health needs and the barriers individuals face when navigating systems.
My work focuses on:
Systemic Advocacy: Collaborating with governments, organizations, and communities to challenge harmful practices and champion human rights in mental health care.
Lived Experience Leadership: Leveraging personal insights to co-design trauma-informed, healing-driven responses that prioritize dignity, self-determination, and community connection.
Grassroots Reform: Empowering communities to lead mental health solutions that are inclusive, equitable, and sustainable.
From contributing to national committees and research initiatives to engaging directly with individuals and organizations, I am committed to fostering systems that honor autonomy, amplify voices, and create lasting change.
Mental health care should never be a source of harm. My mission is to ensure that no one else experiences the challenges I have faced—and to transform systems into pathways for healing and empowerment.
Let’s connect and collaborate on creating a future where mental health care is grounded in justice, compassion, and human rights.
🦋Change maker🦋
The Shining a Light Report.
https://mhlepq.org.au/wp-content/uploads/2023/12/MHLEPQ-CP-report_Shining-a-light-FINAL.pdf
To be read in conjunction with the Not Before Time Report
https://www.livedexperiencejustice.au/
#Shining_a_Light
#Not_Before_Time
I acknowledge those giants amongst us and those we have lost, upon whose shoulders we stand seeking to reclaim our human rights as citizens
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