A conversation with Kerry on Not Before Time
Last week a range of lived experience advocates released Not Before Time: Lived Experience-Led Justice and Repair. The report – which advises the Victorian Minister for Mental Health – outlines the different ways that governments and mental health systems should acknowledge harm caused by mental health and associated systems.
I wanted to speak with Kerry Hawkins (she/her) who, alongside Tim Heffernan (he/him), helped facilitate the Reference Group that decided on the recommendations in the report (you can read more about the process in the website or full report). Kerry has worked as a family, carer and supporter advocate for years.
So, Kerry, what was it like being part of the project and co-facilitating the Reference Group?
I still remember the moment when you first contacted me about this project, Simon, because it felt so meaningfully different from anything else I’d been involved in. It resonated with my experiences, and felt like it could be a tipping point for mental health reform. And I had a sense that this would reverberate internationally, as well. So thank you for inviting me to be part of such an innovative and impactful project.
Having watched both the Australian Productivity Commission Inquiry and the Victorian Royal Commission into mental health services deliver reasonably incurious and mechanistic reports, this process felt different. We took an experiential approach, deliberately detached ourselves from the social contract of the current system and tracked upstream the sources of the harms. This project examined the decades-old invisible design assumptions of the systems that were not addressed by either of the Commissions. We centred experiences and outcomes through a human rights lens, a novel approach in Australian mental health reform.
We were inclusive of families/carers/supporters in this, partly because we were starting from an experiential perspective rather than from a service provision perspective, and partly in recognition that mental health is not a bioindividualistic proposition. So it felt like an incredibly innovative and exciting to be part of.
Aside from the innovative approach, this was also the most generous experience I’ve ever had working in mental health advocacy. I attribute this to you, Simon. You set the tone from the start with your meticulous, ethical, transparent, and trauma-informed attention to the project’s design. As we progressed, your broad and deep technical knowledge both within and outside of the meetings held us in a structure to rapidly settle into developing a culture of relational security and iterative reflection that held us – sometimes only just - through the intensely painful parts of the work.
And this was crucial because this was a project that:
Was about harm;
Required people to reflect on their own (often current) experiences of harm; and
Came with predetermined parameters of being a combined consumer/survivor and family member/carer/supporter group.
One of the first principles the Reference Group decided on for working together was ‘to do no harm’, and the reflective skills, grace and thoughtfulness the group members extended to each other through the process was so uplifting. This thoughtfulness extended beyond the Reference Group, whether it was the awareness of the voices of those not in the group such as children, or other marginalized groups, as well as a strong and sacred sense of obligation to get it right for those harmed in the past, present and into the future. It was this collective ability to hold their own pain through these conversations whilst extending such generosity and consideration to others that will stay with me for a long time.
This was all done online, mostly with people who hadn’t worked together before, and with co-facilitators from outside of Victoria.
Speaking of co-facilitators, did I mention that I adore Tim? We’ve known each other since meeting in Boston years ago and completely trust each other. Working with friends is one of the best things in the world to do for your heart and with your time. So thank you, Simon, for choosing Tim as my co-facilitator. He has this vast rich reservoir of nuanced lived experience expertise to draw from, exquisitely applied, which meant that we could work together intuitively, responsively and flexibly, which we needed to do for this project.
One of the things we noticed in the project was that some family members, carers and supporters don’t necessarily self-identify the harms they’ve experienced in the system. What are your reflections on the harms people experience?
This is true. I’ll address this from a family perspective, and primarily an adult one, although children should have a voice in this discussion as well. I’m also aware that Aboriginal and Torres Strait Islander people and other marginalized groups experience specific additional harms as family members that many don’t.
The first thing that must be said is that family members aren’t subjected to the compulsory, coercive and carceral harm, or threat of harm, that consumer-survivors are. They also don’t face having their identity questioned as intrinsically untrustworthy or defective.
However aside from witnessing these harms to family members, and sometimes being forced into being complicit with these harms by the system, there are many other ways family members are harmed.
Some of these are relational and visceral and some are structural (including gendered) and insidious. I’ll describe a couple of them, then explain why many of them are not self-identified.
Our current system failure with its bioindividualist models of modest efficacy and skewed investment towards too-little and too-late acute services mean that families are preoccupied with keeping their family member safe, advocating for them, worrying about them, pleading with (at best) unresponsive services to be involved, enduring the cruelty of a system directing them to services that don’t exist.
And because they’ve been told the source of their harm is a diagnosis, or ‘treatment-resistance’, they spend a lot of energy making sense of this and reconciling it with keeping family relationships intact, and looking for the next promising treatment or better providers.
In the absence of appropriate recovery resources, they provide practical, financial and emotional supports, juggling a life with depleted resources because they’ve often sacrificed careers to do so. For many families, life becomes one unrelenting experience of crushing triage. Many families don’t survive this intact, the stress of the experience too much pressure on relationships. Families often describe stigma, judgement, reproval and misunderstanding by their families and friends as one of the biggest determinants of their distress.
They find a year, ten years, and for some decades go by and they’ve never, ever, thought about the harms they have experienced in or because of the system. They’re simply too busy and exhausted, and focused on mitigating the system’s harms on their family member. And it’s simply not emotionally safe or possible to think about their own needs or rights until their family member’s needs and rights have been met.
They are also harmed by the failure of the system to provide timely and appropriate crisis supports.
Families will shun what are stood-up as emergency services – police, emergency phone lines, emergency departments, because of fears of what will happen, based on what has happened before. And they don’t willingly shun services – they are forced, in desperation, to choose between two unbearable options in crisis – potential harm inflicted by the system, or potential harm outside of the system.
The system further silences their experiences of system harm and wedges apart natural family relationships by positioning them in the token role of ‘carer’, as stoic and heroic. This is especially problematic for children labelled ‘young carers’, and needs a closer examination from a human rights perspective.
Even when families may individually self-identify some of these harms, they often self-censor them because of fears of stigmatizing stereotypes, of judgement, and feelings of shame. We have only started to unpack harms to families, carers and kin in this project; there is much more to do.
We covered a lot of different ways to acknowledge harm in the system – public apologies, restorative justice processes, reparations, guarantees of non-repetition. Are there options that stand out to you?
The two key mechanisms are restorative justice processes in the form of local community processes to hear the harms, followed by a public apology by government. Being given a space to be heard and validated by people that matter is an opportunity for healing at the individual and family level.
But for me, the critical element of a restorative justice process is the hearing of harm. Whilst the Royal Commission held ‘hearings’, I don’t think you could say that the harms were truly heard, based on the recommendations which didn’t address them. That feels morally wrong to me. Until we clearly, collectively and genuinely hear the harms and reflect this back through an apology and action to design them out of our systems, we are caught in a cycle of persistent failure, because persistently harmed people don’t recover.
Everything flows from the restorative justice process – the burden of harm is transferred from consumer-survivors and family/carers to our public institutions to bear and the appropriate actions follow, whatever the community decides.
We took a conscious effort to think about equity in this project around consumer and survivor, and family, carer supporter harms and interests. It meant we had a 7 (consumer-survivor) / 3 (family member, carer, supporter) split, and sequenced our recommendations so that consumer and survivor processes came first. How do you feel about that?
I thought this was about right. An evidently thoughtful and sophisticated approach to equity was clearly taken for this project. Once the project was commissioned with a combined consumer-survivor and family, carer and supporter scope and Reference Group membership, it was always going to be difficult to find the right balance that reflected the complexity of the project.
The 7:3 split was offset to some extent by having both consumer and carer co-chairs, which enabled extra and separate support for Reference Group members both within the structure of the meetings as well as in between meetings. It did mean we had to intentionally remember the voice of children, and think through how to ensure diverse voices were incorporated. The discussion on sequencing of recommendations followed our discussion on harms, where it was clear that the rights violations and nature, extent and impact of harms for consumers-survivors meant that primacy must be given to them in the processes. This wasn’t a difficult decision.
You’re unlucky enough not to live in the self-assessed best state in the country – Victoria. So, what opportunities do you think this report provides the rest of Australia?
Spoken like a true Victorian! How did everyone cope with the ‘best state’ dissonance created by the Royal Commission?
This report offers a clear and immediately actionable solution to all state and territory governments facing the unsustainable cost and workforce consequences of structurally flawed and non-performing mental health systems across Australia.
Politically, it offers a circuit-breaker to put a buffer between government and the relentless lobbying of service providers and to ensure it is the voices of lived experience that government hears in creating a legacy and truly landmark reform moment.
Morally, it invites governments to step up and be accountable for past and present harms inflicted by service systems they fund and administer.
Practically, it provides a clear and tested pathway to addressing these harms and making sure they don’t happen again.
Nationally, it restarts a conversation on our obligations under the UNCRPD to move away from the human rights violations hardwired into our mental health systems.
I think the biggest opportunity, though, lies with our federated structure, which has often been one of the biggest barriers to mental health reform, particularly since the introduction of the NDIS. There are several existing mechanisms through which the Australian Government could assume a leadership and stewardship role to support states and territories with this work. I would love to see this happen!
