Not Before Time: Lived Experience Led Justice and Repair

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1910

A landmark report has been released exploring possibilities for acknowledging the harms people experience in mental health systems. The report can be accessed as a visually stunning website, the full report (87 pages) and an Easy English version (16 pages). The report has already been viewed by over five thousand people and cited by the Peruvian delegation to the United Nations.

Illustration from above of a group of people in circle from diverse culture holding handsPeople experience a wide array of harms in mental health systems. Some of these are fairly easy to name—historical practices like insulin comas and lobotomies, the life-shortening physical health impacts of (often forced) psychotropic medications, lack of sexual safety in inpatient units and violations of bodily autonomy. An increasingly nuanced vocabulary is also emerging—especially from community organising and other intellectually generative spaces like Mad Studies—describing (for example) various forms of neglect, systemic racism, subtle forms of institutionalisation, impacts on neurodivergent body-minds, microaggressions, epistemic violence, sanism and structural violence.

Many folks who have experienced harm in mental health systems are yet to have our experiences witnessed and affirmed, including opportunities for collective sense-making. Harms experienced in mental health systems have also not been rendered fully visible to the broader community: outside our own networks, many folks in the broader community believe the mental health system is beneficent, providing much-needed treatment, care and support. How might we render mental health system harms visible? And what forms of acknowledgement and/or redress might we seek? The Not Before Time: Lived Experience Led Justice and Repair project endeavoured to address such questions.

The project emerged in a specific geographical and historical context: between 2018-2021, a Royal Commission was convened to examine the Mental Health System in Victoria, Australia. A Royal Commission is a very high level, well-resourced process with full authorisation from the State, examining an identified social problem. Commissioners spoke with identified experts, held public hearings and invited public submissions, before producing a multi-volume report, which concluded that the Victorian mental health system was catastrophically failing and in need of transformation. Their report details 63 specific recommendations, and the Victorian Government has agreed to implement every one of them.

“What happened next?” is still unfolding. A huge amount of work is being done, including the creation of new bodies and a rapid expansion of the lived experience workforce. However, the promise of transformation has arguably been structurally precluded, with disappointment after disappointment, and reversions to the status quo. There are some hopeful threads, including a lived experience-led residential service and a legislated opt-out advocacy service, run by Independent Mental Health Advocacy (IMHA), a government-funded organisation that has demonstrated exemplary practices in supporting consumer rights, dignity and autonomy. Inside the government’s mental health bureaucracy, an entire Lived Experience Branch has been established, including the appointment of Mary O’Hagan as Executive Director, a luminary of the international consumer/survivor movement. Mary had previously been part of the New Zealand delegation to the United Nations, working on the Convention on the Rights of Persons with Disability (CRPD), co-created PeerZone (a peer-led alternative support structure for people in distress), and played a leading role in the emergence of Mad thinking (e.g. her memoir Madness Made Me & a chapter in the 2023 Routledge Handbook of Mad Studies). Mary has also supported me personally while I was in an extreme state, keynote at a PeerZone event—her ways of being with me exemplified mutual aid, enabling me to navigate my extreme state outside of the carceral mental health system, including presenting my keynote, held in collective care. Systemic transformation takes time and it’s still early days post-Royal Commission, there are many threads of possibility.

However, the Royal Commission was focused on improving the system, rather than directly exploring the harms experienced by those using the system (or subjected to it). So, our local consumer/survivor organisation, VMIAC, proposed a project, that was subsequently funded by the Lived Experience Branch of the Mental Health Division of government, to focus on the harms of the mental health system, and potential forms of acknowledgement and reparations. This work was led and stewarded by Simon Katterl, a local human rights-informed advocate and consultant with a passion for accountability processes. Simon brought together a group of 10 “comrades” (as he affectionally addresses us), seven people with direct lived experience of the mental health system, and three with lived experience of the mental health system as family members/kin/carers. We were recruited in various ways, including through local consumer and carer registers. Simon added two Reference Group Facilitators (one consumer, one carer) to increase safety for group members. Power was consistently decentralised (hence, for example, my writing this blog—I’m one co-author amongst many; we have all stepped up at various points).

Although initiated by the local consumer/survivor organisation, this inclusion of family/kin/carers was a critically important element in the project, as well as complex and sometimes deeply painful. One deeply valued (survivor) member of the group left the project, voicing concerns about critical differences between these two positionalities, especially where family is not a site of care and support, but a site/enabler of some of the most painful harms. The group explored and sincerely grappled with our differences, but choose to continue working together in solidarity, even as we navigated painful ruptures, misunderstandings and differences. This was a profound experience for many members of the group, even as we sincerely respected the decision of this member of the group to step away. Those coming from a “carer perspective” (as it is typically languaged in our context) respected that direct lived experience was necessarily at the centre of this work, and could not be blurred with family/kin/carer experiences, while those coming from a “consumer perspective” (as it is typically languaged in our context) respected the kinship connections that are critically important for many folks, as well as the specific impacts on family/kin/carers, honoring both specificities and interconnections. There was also an explicit commitment within the group to keep the experiences of children in mind, as their voices are often structurally absent from mental health discourses. In the Aotearoa/New Zealand context (which some group members had connections with), the expansive Maōri term whānau is used to embrace family, kin, community, loved ones; in Open Dialogue contexts (which other group members had connections with), the term “network” is used similarly, albeit with a much less elaborated cultural lineage. Together, we shared stories of the impact of the mental health system on ourselves as individuals, but also on our relatedness, our whanau, kin, networks, familiars, partners, children, parents, and other loved ones.

A second member of the group also decided to step away from the process, for different reasons, and remaining in connection with the project group. A First Nations’ man, he spoke to the inseparability of First Nations’ individuals and communities, explaining that it makes no sense to respond to a First Nations’ individual, in isolation from their community. In stepping away from the project, he expressed grave concerns about the harms experienced by First Nations’ peoples in the wake of colonisation, and argued that the approaches we were exploring would not even begin to address this colonial legacy. Again, the group engaged deeply with this analysis and recognise that grappling with the impacts of colonisation is ongoing and foundational in any settler colonial society. These critiques co-exist with the work so far, and these are—necessarily—ongoing, collective conversations.

The process was held with a spirit of stewardship—we were doing this work in relationship with (and accountable to) our wider communities. Simon interviewed dozens of people with relevant expertise, including legal scholars, First Nations’ leaders, disability rights advocates and folks working in restorative justice processes. Simon reported back what he was hearing to the group to discuss. The co-authored report that resulted, Not Before Time: Lived-Experience Led Justice and Repair, (beautifully illustrated by Lisette Muratore) presents our collective findings and thinking. A community event was recently held to share this work back with the VMIAC community, who had initiated the project. Now this work is being offered to our broader communities (including readers of Mad in America), as a (hopefully) generative collective resource.

In terms of the report’s findings, specifically, we propose a two-fold process: first an organised structure for truth telling, intentionally inviting and listening to people’s stories of harm, followed by formal acknowledgement of these harms (an apology). We were clear that any apology that wasn’t preceded by a robust, accountable and inclusive process of truth-telling, or that lacked a commitment to non-repetition, would be meaningless and would likely cause further harm. The specific organisational structure that we identified as best-placed to take on this work was the (at the time of writing the report, not yet established) Mental Health and Wellbeing Commission. However, subsequent developments in our local context have meant this way forward seems less clear. We are collectively grappling with our own “what next?”

Other possibilities we explored included: individual compensation, collective reparations (such as funding for peer-led crisis services, or similar community-led alternatives) and symbolic recognition (such as plaques commemorating sites of the most heinous harms). These were not rejected outright, but were deemed lower (and more ethically complex) priorities. Our report is not intended as any final word, but as a contribution to ongoing collective conversations.

We were just a small group of a dozen or so humans, in a sparsely populated continent geographically located in the Global South. Most of us live and work on Wurundjeri Country (the traditional custodians of the land known under settler colonialism as Melbourne), but we were spread across several states of “Australia” (the settler colonial name for what is actually hundreds of nations). One of many legacies of colonisation is that work emerging from the Global South is often minimized by those in the Global North (who often implicitly assume that knowledge transmission flows strictly from the centres of colonial power to its peripheries), but I warmly encourage you to read this work. It’s designed to be easily skimmed, because we know that many of us are time-poor or have particular accessibility needs. Our hope is that these conversations that we have been having in our own local community, around acknowledging the harms of the mental health system, will resonate with, resource and amplify conversations others are having in their own communities elsewhere, such that together we can hopefully progress lived-experience-led justice and repair (not before time)!

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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5 COMMENTS

  1. Wouldn’t “an apology” be nice? Wouldn’t it be nice if the psychiatric profession admitted to the fact that their ADHD drugs and antidepressants and antidepressant withdrawal can create flu like symptoms, odd sexual side effects, brain zaps, mania, etc? Wouldn’t it be nice if the psychiatric profession confessed to the fact that their anticholinergic drugs (including the antidepressants and antipsychotics) can also create psychosis and hallucinations, via anticholinergic toxidrome. And the antipsychotics / neuroleptics can also create the negative symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome. Wouldn’t it be nice if they admitted to their “chemical imbalance” lie? Some psychiatrists have denied they ever used that lie, but denying you personally utilized a particular lie, is NOT the same as an apology for the systemic use of that lie by psychiatry, psychology, big Pharma, et al. Wouldn’t an apology, as opposed to their continuing and systemic denial of the common adverse and withdrawal symptoms of their neurotoxins, be nice?

    Thank you for your activism, Flick.

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  2. Cessation of violations and guarantees of non repetition are a bottom line for any apology or other reparations initiative. As I recall the report rejected these possible recommendations.

    There is a lot of survivor care for one another in this report but in my view this is a critical shortcoming.

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  3. As narrated, the case of Victoria, Australia shows that without prosecution the letter and spirit of the law is dead.

    I have seen physicians doing contraindicated procedures when that contraindication is in the exams of their medical and speciality training. Even their certifications. I have seen it.

    I have even seen it when “professors” make that contraindication part of a lot, if not most, exams applied to trainees by the “professor”*. A contraindicated procedure done by the professor who asked trainees in their exams if that is actually contraindicated(!?). To almost no one’s shock about it. Heck, even with the apparent aquiescence of people who supervise and/or should know and probably DO better.

    With the vague and pernicious justification “in my experience works”, “I have seen it working” or the like. An appeal to authority in the sense that no evidence, no argument is provided to prove, or justify the claim that the expert knows, knows, it works. Not believes or states, claims it works.

    As stated, even when sometimes it is clearly, generably, demonstrably and recurrently proven contraindicated. Just because the expert in this particular victim thinks, in his or her experience it might work: “I have seen it!”.

    A more pernicious systemic problem in medicine TRAINING and ACCOUNTABILITY, and by extension the ineffectiveness of trying to correct the at least lack of display of effective knowledge by physcians, even within their area of expertise, let alone outside of it as in human rights, or just the plain text or interpretation of the law.

    Display, because after all, they pass the exams, but in practice sometimes they do exactly what they are not supposed to do. They know, but they don’t behave like they do…

    And in psychiatry, it is notorious from the comments at MIA and the statement of at least two lawyers here at MIA, AFIRC, that at the very least they are law evaders, and in many cases, law breakers.

    Knowing the law will not change effectively their behaviours, they will evade it, as Mr. Aftab evaded the rules of logical argumentation with Mr. Wipond. And the laws of civil discourse with Mr. Sterling by using inflamatory language, to my lame, uninformed and untrained opinion.

    https://www.madinamerica.com/2023/10/reconsidering-forced-psychiatric-care-a-conversation-with-rob-wipond

    https://www.madinamerica.com/2023/09/inside-neuroscience-community-peter-sterling-responds-awais-aftab/

    https://awaisaftab.substack.com/p/causality-intervention-and-psychiatric

    And even the laws of science, epistemics, medicine and evidence based medicine, but that is not proven from the conversation in reference. I can only guess educatedly.

    Only accountability, disclosure and the rule of law can change that. A catalog of good will, even if aced in the exams, in my personal, probably deviant experience, for some patients, colleagues and trainees won’t make a difference. Why and how does that work psychologically, sociologically or psychiatrically? no idea…moral harm seems lacking to me…

    *In disclosure: that professor showed some behaviours indicative of psychopathy, in a hospital notorious, even infamous, for some “specialities” training for being extremely psychopathic, even when meassured by callous treatment against trainees standards, common and widespread in medical training. An outlier in psychopathy against trainees so to speak. And as one can hope imagine, against patients outside of “psychiatry”…imagine…

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  4. A thoughtful & clearly written account of a hopeful process.
    Thank you, Mx. Gray, very much for this report back.

    But.
    As an old Madwoman who has advocated for, created & carried out a flying-under-the-radar group of services for individuals & collectives experiencing one of the multiple harms experienced by those who are in some way Mad, whether it has been inflicted (in my experience, most common) or acquired some other way, I must encourage taking any form of State support with many grains of salt.

    Various State actors can and will give time, resources, and important platforms for those who have been harmed, those who have been recognized as experts because of the harm they’ve lived, and listen with attention and respect at the various hearings, meetings, and forums held to tell the Truth of It.

    And then reports will be hashed out in carefully chosen sub-committee meeting at least weekly for at least 9 or more months, and recommendations solicited and carefully written within often brilliant final reports that actually say something new and simple and clear and urgent and utterly necessary and completely doable.
    Within this process, language will begin to change to reflect the real identities of those who previously have been named by dominant historical cultural norms.

    Reforms will be legislated into some forms of policy. Those who have invested their pain and time and truth in shaping these reforms will be acknowledged and awarded special plaques, have special days named for them by legislative bodies, be congratulated and honored by many and diverse individuals, often those who are famed for their power.

    Until the next election cycle.
    Until the latest budget data reveals flawed spending on “trendy” methods without verified quantitative outcomes, based on Best Practices already in existence.
    Until the next act of outrage can be pinned on one of the class of identified Lived Experience experts.
    Until the fear of being Othered for associating with the Others repels the States Elected leaders. (See Election cycle.)
    Until those with any recent historic memory are no longer engaged and no one is monitoring the manifestation of the original reforms, and it is decided that the process is too cumbersome, too expensive, or just not necessary any more because it all got Fixed.

    The State, in its duty to always remain in power, will use the multiple bureaucracies it consists of to reverse the legislated reforms, to not renew the contracts for the newly reformed services, to decommission the Special Commissions it called into action in the first place, as it must respond to the needs of The People, as voiced by various media platforms and those who make up its most important tax base.

    Otherness, including Madness comes and goes in and out of style, depending on the need at the moment for the appearance of current propriety or of a dependable scapegoat.

    Until there is recognition of the basic intrinsic and intangible value of every human life, those who cannot engage within a system of exploitive capital extraction, acquisition and hoarding of resources as a means to hold power over that process will have no value what so ever to those within the dominant social orders.
    They really do not give a fuck. Unless it hurts their bottom line.

    If we want things to change, we have to do it ourselves, without The State in any form.
    It’s very possible. It has been done, and is being done.
    Reformation is not Creation.
    This doesn’t mean not holding them accountable.
    But we cannot legislate healing from what has caused harm.

    “The Master’s Tools Will Never Dismantle the Master’s House”
    Audre Lord, 1984

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