Most days important facts and names blend into an alphabet soup in my mind. Names of the companies who profited from VIP PPE contracts, the personal links between politicians and with money merge. My pin number. The other day I gave someone my phone number, and several hours later I realised that I’d given them a number from my childhood home that hasn’t existed for three decades.
Since the pandemic started I carry a notebook everywhere. My work space is littered with post it notes, many of which I no longer understand and I stare at my recently unpacked books with a complete absence of recognition.
How I wish I’d been a better archivist, filing facts that form the threads of what I know about the world.
The drive to erase and ignore the long histories behind systemic failure is powerful right now. Factual sleights of hand made easy by our exhaustion, we have entered a profound period of covering up.
The lessons of pandemics means that living memory and deep knowledge have never been so important as a defence against the sophisticated insults that get churned out by the institutions charged with protecting our health.What we learned from one pandemic to another about the link between testing and treatment, financial insecurity and physical vulnerability. HIV/AIDs to Long Covid, we’re going round in circles in an attempt to deny the nature and the scale of the problem.
Some years ago we produced an eBook Surviving Work in the UK which included a piece by the beatific Helen Spandler about the psychologization of trauma. Class and gender all feeding into the medical psychiatric model of what passes for healthcare, nudging people into a downgraded mental health system of cognitive behavioural therapy (CBT) and teeth gritting.
Helen’s blog includes a reference to one of the many forgotten stories of failure about the treatment of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). I don’t have the energy to have a pop at mindfulness today but you know, hardly worthy of a healthcare profession to recourse to the ‘all in your head’ defence for doing, at the very best, the clinical equivalent of nothing in response to Long Covid.
On the basis of a contested PACE trial, the use of CBT and graded exercise therapy (GET) became the standard treatment for ME/CFC. A complex and still misunderstood disease reduced to positive thinking. When patients resisted this reduction and spent five years trying to get hold of the PACE trials data, good things happened and Queen Mary University was forced to publish and then reanalyse the data only to find that this treatment was not evidenced. The reality of psych-compulsion and PaceGate emerged. Although this period in our history is marked on the people who went through it much of the data trail has been removed, including the scientific data produced behind it.
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At the time when we published our series of blogs on the LSE’s Business Review I was surprised that for an eBook full of the sexy-stuff of self-employment and the gig economy Helen’s blog was the one that raised the most hackles. I didn’t understand at the time the radical importance of the articulation of a history of our institutions in using psychologisation to neutralise their responsibility for public service.
To remember what we knew before the pandemic about how to survive the long recovery ahead means following the factual threads. So back up, download and remember our history of sophisticated insults.
To download Helen’s article and the eBook for free Surviving Work in the UK go here.
Workplace alliances: Healing rifts between psychiatric survivors and mental health workers by Helen Spandler
Many people who have used mental health services, especially if they have experienced compulsory treatment or detention, describe themselves as ‘psychiatric survivors’. This doesn’t just mean they have survived a mental health crisis, or the damaging circumstances that may have led to it. It also means they have survived the very system designed to help them.
Sometimes it is claimed the psychiatric system caused more harm than their original ‘symptoms’. Many experience the system as traumatising, or re-traumatising, by mimicking previous experiences of abuse and neglect which contributed to their mental health difficulties in the first place. Some psychiatric survivors have referred any form of psychiatric compulsion as a human rights violation, and this is now embedded in the UN convention of the Rights of People with Disabilities.The poor treatment of service users is not only historical with the current mental health system still having a lot to answer for. This involves not only the use of coercive ‘treatment’ and confinement, including psychosurgery, ECT and often harmful psychoactive drugs, but also various forms of invalidation, or what has been called ‘epistemic injustices’ where people’s self-knowledge and experiences are disbelieved and dismissed.
Just two examples will suffice. First, many survivors report their stories of abuse – both prior to, and subsequently within, the system – are not believed and seen as a ‘symptom’ of their mental illness. Second, the psychiatrisation of conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) where organic and physical conditions become ‘all in the mind’. Here, whilst there is a complex inter-relationship between the mind and body, psychiatric reductionism has resulted in a catalogue of instances of maltreatment, neglect and abuse www.hfme.org/meandabuse.htm.
In both examples, sexism rears its ugly head. Women and girls are more likely to suffer abuse, especially sexual abuse. In turn, abuse victims find their coping mechanisms labelled as diagnoses like ‘borderline personality disorder ‘ which Judith Herman described as no more than a ‘sophisticated insult’ pathologising trauma into a mental illness. Most ME/CFS sufferers are female, many of whom have been called ‘hysterical’ and ‘irrational’ by doctors and psychiatrists. The medical and psychiatric establishment has yet to come clean, admit to or apologise for these abuses.
At the same time, mental health workers can feel unfairly maligned. Accusations of psychiatric ‘abuse’ can be hard to hear by a mental health service where workers ‘do their best’ in an inadequate and poorly funded system, with few alternatives. Undoubtedly, most enter the system to ‘help’ and don’t relish using coercive powers, like those enshrined in the Mental Health Act. It’s perhaps understandable that workers can become defensive in the current conditions 54, however survivors are often perceived as recalcitrant, in denial or lacking in insight. On the one hand, workers and often service users’ families are convinced the person needs psychiatric help, even if they don’t know it, but the person concerned refuses. As a result, we are often locked in an endless battle where both ‘sides’ harden their position – whether within individual service interactions or within broader psychiatry/anti-psychiatry movements. Sometimes it feels there is no way through the impasse.
Maybe we can’t move on till we’ve fully heard and appreciated the depth of survivor’s negative experiences, a psychic equivalent of the ‘speaking bitterness’ processes during the Chinese revolution. One important step could be to find ways of supporting survivor-led organisations in developing their own alternatives – or, at least, what Jasna Russo has referred to as ‘the right to search for this ourselves’. Workers’ organisations also need to find more sophisticated ways of defending, and developing more democratic mental health service overriding the tendencies of trade unions to stick to bread and butter workplace issues rather than defending the principles of a progressive mental health service. Whilst, to some degree, these might be parallel processes, there also needs to be a process where survivors and workers can listen to each other, work together, and learn from each other.
Jan Wallcraft and other survivors have made a plea for Truth and Reconciliation in relation to psychiatry. Such initiatives have been developed in relation some of the world’s worst human rights abuses such as Apartheid South Africa. It is not about seeking retribution or compensation rather, it is a form of restorative justice. A process where silenced voices, including both stories of perpetrators of abuses and victims can be heard, and not interpreted, judged or ‘resolved’. Could this work in such a contested field as psychiatry?
There have been some recent intriguing attempts. For example, earlier this spring, a series of ‘healing circle’ events were hosted in Portland Oregon US by three grassroots organisations, The Icarus Project (a radical psychiatric survivor project); the M.O.M.S. Movement (movement of mothers and others standing up together); and Rethinking Psychiatry . In addition to Truth and Reconciliation, these events were also influenced by Open Dialogue, a new approach to working with people experiencing mental health crises, as well as other initiatives developed to talk about highly emotive and divisive topics. The first event involved those who have received, and those who provide, mental health services.
Each took it in turns to share their stories in an inner circle, without interruption, with an outer circle of those just listening. If people identified as both they could be in either or both. After each inner circle had their say, a debrief was held and the groups swapped over. It ended with a full circle where people asked questions of each other.
The process was initiated because so many people felt traumatised by psychiatry. However, there was room in this process for people who feel psychiatry had helped them, or those who feel harmed by working in the system, and presumably those who have been harmed by psychiatric survivors. In a similar fashion, Lucy Costa, in Toronto has talked about drawing on (but not co-opting) indigenous communities restorative justice initiatives to develop greater understanding between victims and perpetrators of psychiatric violence, drawing on a recent survivor-led anti-violence framework .
It’s early days, but these experiences offer hope that something like this could happen in the UK. First, it seems important that any process like this is initiated by psychiatric survivor organisations and their allies, rather than mental health professionals. Second, although such processes may be ‘healing’, it seems important they are not set up as explicitly ‘therapeutic’ as the framework is not about more ‘treatment’. Third, it would require careful facilitation and a willingness for people to participate with an open mind and heart. Like any form of restorative justice, it won’t work if it is imposed.
Whilst I think these initiatives could be enormously helpful, they are not a panacea. They cannot replace the urgent work of reforming or revolutionising the mental health system. Maybe, however, transformation can’t happen without it.
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