‘A Disorder For Everyone’ Festival 18th September 2020

‘A Disorder For Everyone’ Festival 18th September 2020

‘A Disorder For Everyone’ Festival 18th September 2020

By Vicki Dunham Senior Practice Development Lead Boingboing

I was so excited – the day had finally arrived for the 14 hour ‘A Disorder 4 Everyone’ Festival, a mixture of presentations, personal stories, poetry and discussion all with the same message – the way we currently understand and support those experiencing mental distress doesn’t work. Here are a few of my take home messages from the day.

‘They will feed you pills to cure social ills’
(Sanah Ahson, AD4E)

Dr Lucy Johnstone is a bit different from the traditional NHS psychologists I used to work with who believe individual therapy is the only answer for mental distress – even though evidence shows otherwise. Lucy says we have to look beyond individual therapy to social change. Yes Lucy, we agree! Here at Boingboing we believe that resilience is shaped by adversity and some people are faced with more adversity than others, so to improve mental health we need to make life fairer by striving for social justice.

Lucy talked about the DSM-5 (The Diagnostic Manuals of Mental Disorders written by psychiatrists). In mental health services this (and the ICD-10 in the UK) are called ‘the psychiatrists bible’. It’s a bible with lots of additions, in 1900 there were 3 diagnosis in the DSM-5 for mental health disorders and now there are over 300. Apparently, even an author of the DSM-5 (Dr Allen Francis) questions its validity. Lucy quotes him as stating ‘there is no reason to believe the DSM-5 is safe or scientifically sound’. This is a big deal; mental health services are built around this medical model of diagnosing and labelling people with mental illnesses. If we are questioning this, we must then surely question the whole structure of our current model.

There were more shocking tales. Dr James Davies is a Reader in Medical Anthropology (how interesting does his job sound?) and his presentation about the ‘Making of Mental Disorder’ was fascinating so I’ll be taking a look at his book ‘Cracked; why psychiatry is doing more harm than good’. James says 1 in 4 of us have a diagnosable mental health disorder because the diagnosis criteria are so broad they cover so many of us facing distress or social adversity. He says there is no biological evidence for diagnosis and no scientific proof. Instead the DSM board would discuss a new idea for a diagnosis and thrash it out around the table, like a ‘group of friends deciding where to go for dinner’. Apparently, in one conversation (part of James’s job is to look through all the archived minutes from DSM meetings) a group of 9 psychiatrists were deciding on the criteria for a particular diagnosis, when one psychiatrist said ‘you can’t include that behaviour in the criteria – I do that’. So that particular behaviour was omitted from the new diagnosis. I have to say, I do my weekly shopping list with more scientific rigour than this!

James didn’t mention the demographics of the psychiatrists round the table, but if we assume that they were predominately white middle-class men, then we take a look at the demographics of people disproportionately diagnosed with mental health disorders – BAME, female, socio-economically disadvantaged and marginalised groups – we can see how power and oppression is at play here. Through the Boingboing lens on resilience, this is tantamount to saying ’let’s tell people that their reaction to adversity and inequality is an illness requiring individual treatment and no one will notice the bigger picture’. Nor will the powers that be have to bother themselves with addressing inequalities in our society. They can just make individuals responsible for their mental health and carry on as usual.

Once someone is diagnosed with a mental illness based on this flawed medical model, the main treatment offered is medication or, if you are lucky, individual therapy. James says psychiatric drugs are more ineffective and unsafe than we are led to believe, and the relationships between psychiatry and pharmaceutical companies have become more and more enmeshed. There are big bucks involved here. £266 million of the NHS budget a year is spent on psychiatric drugs so pharmaceutical companies do quite well out of the current arrangement. Vested interests sticking together to maintain inequalities at the expense of individual and community health. Ruth E Dixon’s powerful short film ‘Madness Meds’, about her mother’s 40 plus years of mental health ‘treatment’, shows how damaging psychiatric medication can be. I have to say, I do know lots of people who have found medication helpful as it can offer short term relief for overwhelming distress. But we need to be better informed of potential side effects, the health implications for long term use, clear guidance for withdrawal and we need other options to be available that focus on the social aspect of distress. A focus on the social determinants of mental health represents our only real opportunity for change, and yet this is consistently ignored or invalidated by dominant norms and attitudes coming down from those in power.  And whilst we are rooting for informed choice and real life chances that stem from a focus on addressing inequalities, let’s pay some extra attention to the most powerless members of our society such as people with learning disabilities and children and young people (whose voices I unfortunately didn’t hear today) who are increasingly prescribed medication. I wonder how much informed choice and opportunities to have a fair shot at resilience and mental health they currently have?

Professor John Read talked about middle aged women being the main group to be subjected to Electroconvulsive therapy (ECT) (there are still up to 2500 people subject to ECT a year, nearly half against their will). This is a practice that lacks any evidence of being effective and can leave between 12- 50% patients with permanent memory loss. I remember my grandad having ECT as an inpatient in a psychiatric hospital in the 1980’s and he was never the same again. I am astounded that this practice is still going on. John is part of a campaign group for an independent review of ECT, we can sign the petition and John asks us all to write to our MP. I will do that John and I invite all Boingboingers to join me.

Indigo Daya talked of her personal experiences with mental health and how medication, inpatient experiences, ECT and labels led her to be more distressed, disabled and suicidal. Indigo said that she used art to get through the days. She once took her artwork into the psychiatrist’s appointment and he told her to put it away as it had nothing to do with her ‘treatment’. How wrong he was – art, music, singing and community engagement can have a lot to do with recovery – as Boingboinger Angie talks about in her book ‘Building a New Community Psychology of Mental Health; Spaces, Places, People and Activities’ (Walker, Hart and Hanna, 2017). It is just that research into medication and individual therapy receives most of the funding so remains the dominant discourse.  Fortunately, Boingboing and the University of Brighton Centre of Resilience for Social Justice are on the case and are currently busy researching civic activism as a mental health intervention.

Artwork Image by Indigo Dava

Not once during years of being in mental health services did anyone ask Indigo what had happened in her life. I recently watched ‘What’s the Matter with Tony Slattery’ (May 2019 BBC 2 Horizon). Tony suffered years of chronic distress and the ineffective input from services only focused on diagnosing him, not on what had happened to him. Lucy Johnstone and her chums have developed the Power Threat Meaning Framework. This is a trauma-informed model which understands mental distress in the context of trauma and adversity rather than a chemical imbalance or individual thought disorder. Like Boingboing’s Resilient Framework, the PTM framework understands people in their relational and social context and links distress to social justice.

Indigo describes her distress as a normal reaction to abnormal experiences and that it is society that is broken not individuals. Indigo concludes that we need more equity, compassion, and a better world. In the time of global pandemic when we are reading about a ‘tsunami of mental health problems’ I think Indigo’s message is more relevant than ever. Our distress during this pandemic is a normal reaction to a very abnormal experience rather than a mental illness. The inequalities some people already faced are made worse by the pandemic, exacerbating their already disproportionate risk of mental health issues.

Next, Matt Ball talked about therapeutic relationships. He said that mental health professionals often see patients as ‘other’. Othering and mattering is an important concept here in Boingboing, in fact we have just run a fab Resilience Forum about it (you can find the slides and film of it on our website as well as details about future fab forums). To matter means we feel valued and add value (Prilleltensky, 2019. p.2). It equates to a sense of belonging which is a really important part of the Resilient Framework. On the other hand, ‘othering’ describes the belief or unconscious attitude that someone is different to you – they are the other. It is often marginalised people who experience being ‘othered’ (Canales (2000, p.16).  Listening to Matt, and from my own experiences working in Child and Adolescent Mental Health services, there is a lot of othering going on in mental health services and very little mattering. The thing is, othering is not good for our mental health as it causes distress, low self-esteem and low self-worth. So that means mental health services are not good for our mental health – mmm.

Johann Hari in his presentation ‘Real causes of depression and anxiety and how western society is tragically failing its most vulnerable people’ talks about loneliness (in Boingboing we prefer the term marginalised rather than vulnerable – we think it shifts the responsibility a bit). We are the loneliest society in history and that is not good for our mental health. We know this at Boingboing, that’s why social connectiveness is at the heart of what we do. It is good to hear from Johann that social prescribing is showing to be effective in tackling the causes of loneliness, but we think we need more investment into this model, for it to be extended to children and young people, and to call it something that doesn’t resemble the medical prescribing model (it’s called ‘Community Connectors’ in some places).

Johann comes out with ‘some big news’, that financial insecurity causes anxiety and you are 10% less likely to have anxiety disorder if you own a nice house. Johann explains that whilst most of us at the festival know this, for lots of other people (including those in positions of power) the links between social inequalities, poverty and distress are ignored or even denied. Maybe, I wonder, because for those in positions of power, their power is upheld by the widespread belief in chemical imbalances and individual thought disorders. There is a lot of money to be made in pharmaceuticals and individualised specialist therapy. Surely as the world copes with the impact of Covid-19, including a rise in unemployment, pending recession and increased isolation, the chemical imbalance /individual thought disorder explanation for the rise in distress in society cannot be sustained?

Johann said the welfare state has become ‘an engine of humiliation’ and he talked about an experiment in a little town in Canada where a basic income was guaranteed for everyone. No one gave up work (though some people had longer maternity leave and stayed longer in education) and there was a big improvement in everyone’s mental health. People were happier because they had enough money to live on. Johann said we need to organise ourselves and fight together for a universal basic income. The UBI Labs are already getting on with campaigning for pilot sites in the North of England. 

Dr Karen Treisman summed it all up in her excellent presentation about trauma when she quoted Archbishop Desmond Tutu ‘we need to stop just pulling people out of the river, we need to go upstream and find out why they are falling in’. In the Boingboing Resilience Approach we call this ‘Beating the odds whilst also changing the odds’ (Hart et al, 2016). So that is what we need to do if we are going to reduce the level of distress currently experienced by an increasing number of us. We need to change the odds by striving for a fairer, kinder, safer and more equitable society.

In the Boingboing Resilience Approach we call this ‘Beating the odds whilst also changing the odds’.

Thank you ‘A Disorder For Everyone’. A very thought-provoking day and I can’t wait for your next event.

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