The ERNI Declaration: Making Sense Of Distress Without “Disease
Posted on 23rd August 2021 at 14:36
The ERNI (Emotions aRe Not Illnesses) declaration is based on the idea that distress does not equate to disease, dysfunction, dysregulation, or chemical imbalance. Signatories believe that there needs to be a shift from illness and diagnosis ideas to personal narratives and understandings.
The declaration was created with the appreciation that there are many like-minded people out there who share opinion, research, ideas, and experiences with others within many contexts but are frustrated by subsequent lack of action or change within mental health and other related systems.
The Disease Model
The disease model for understanding emotional distress has been the primary paradigm in Western cultures for a hundred years, with roots that stretch back even further. So, how well have we done with it all? We certainly have the privilege of many years to look back upon. A hundred years on, have the developments of such ideas and technologies been roaring successes, resulting in a happier, more reasoned and free society?
The evidence is to the contrary. Whilst the language of science and medicine has prevailed, we have seen poorer and poorer outcomes of the associated regime. Growing evidence suggests that the drugs don’t work and that the cultures most heavily influenced by psychiatric medicine have the poorest long-term outcomes and disability rates in populations of distressed people.
But, as clinicians and users of services, we don’t need studies to convince us of this. We have first-hand knowledge of the harm the medicalisation of distress can do. We are aware that, unlike other branches of medicine, this is the only one where outcomes have got worse as “treatments” have developed and where cultures that do not embrace specialist medicine do so much better. Without belabouring the point: it hasn’t worked.
We would argue that not only do the drugs not work (and cause harm) but that the system itself brings with it endless opportunities to rob people of the resources they have for getting on with life. Some of the processes through which this may happen are listed below.
Alongside encountering physical harm, we work in contexts where “identity theft” is the norm:
A person + distressing experience = new (externally imposed) identity / personhood
Many people experience catastrophic attacks on their sense of certainty brought about by loss, illness, poverty, abuse, or physical injury. These experiences overwhelm and it has become the norm to look for expertise, power, and science to help. The result is all too often a denigration of the whole of the person’s identity.
How do you move on, for instance, when you are told that your whole personality is disordered? How long before your experiences are seen as something you have “got” and then something that you inherently “are”?
The Power Threat Meaning Framework is a British Psychological Society (BPS) publication that builds upon the 2013 Position Statement of the Division of Clinical Psychology of the BPS, inviting a paradigm shift from the classification of behaviour and experience in relation to functional psychiatric diagnoses. It invites a move from the question of “what is wrong with you?” to that of “what has happened to you?”
How incredibly damning that this has proved controversial!
A focus upon the medical metaphor and the notion of “symptoms” has resulted in the subjugation of people’s lived experience and ability to story it. People who are victims of harm are so often named as the problem themselves—their victim status reaffirmed by the very system that is meant to help.
Outsourced Parenthood and Community
This might be okay if the approach was working, but we know it is not! Richard Bentall, in a recent piece for The Guardian, cautioned against viewing the current pandemic as a “Mental Health Tsunami.” He suggested that people fare better when disaster is a shared experience with the potential for new community understandings to emerge. He expressed a concern that the emphasis upon harm could potentially become a self-fulfilling prophecy.
We now live in a culture where parents and teachers believe they lack the knowledge and skill to help their children in distress without calling on the experts. More often than not, they wait months, if not years for the help and, whilst perhaps this could be useful work in the end, what has happened in the meantime? How often have we heard our friends, family, and colleagues venting their frustration at having to wait for help? It is not their fault—they have been bombarded with messages that they need the medical experts in order to do the right thing by their child.
Skirting any sort of metaphysical debate and selling to the masses the belief that any feeling, drive, behaviour, action, or thought has the potential to be indicative of “mental disorder,” we have been sold the most unconvincing metaphor on the planet as concrete truth. We have bought, hook, line, and sinker, the false story that chemical changes in the brain are causal of mental disease. In the era of “fake news,” should we be surprised that powerful people (with much to gain from the outcome) sit in a room and vote for new disorders that seem more or less convincing to them, package them up in manuals, and sell them to the world and his drug company?
The upshot of the all-encompassing global sales pitch is that we have come to believe that strong and shattering and unusual emotions are somehow disease-based. We have also come to understand that there are medically disordered ways to grieve, to worry, to feel sad, to get angry, and to do relationships with others.
Imagine a ward round (yes, we still have this language). Faced with the subjugation of an individual’s experience and identity in favour of a professionally imposed, medicalised alternative, how easy, useful, or understandable is it for the lone clinician to stand up and seemingly discredit the very foundation of all the intrinsic beliefs held by one’s colleagues? How might the already terrified subject of the meeting understand the dissent in the room?
Would any empathic professional who disagreed with colleagues on a fundamental level choose the existing side-show being made of another’s life as the arena to air it? How would this be understood by everyone there? It would take incredible strength and thought in the moment to be able to do so in a way that does not further disempower the person you are there to help.
So, what is the ERNI declaration?
The ERNI Declaration evolved from the sense of impotence felt by lone individuals forced to access or work in mental health services that are fundamentally flawed, unhelpful, or harmful. The ERNI Declaration is a clear statement that positions its signatories alongside allies. It moves us away from the position of being the lone advocate in a powerful system to being alongside international peers. It makes visible what we believe and how we approach our professional work or the care we receive within mental health services. Anyone can sign the declaration if they feel it represents their view.
The objectives of the declaration are:
To connect and make the voices of ERNI-minded professionals more audible
To connect and make the voices of ERNI-minded users of services more audible.
To make the principles of ERNI more visible.
To influence the development of services.
The declaration currently exists as a google form, available here. It outlines what signatories believe and asks a series of questions about how visible people would like their support to be.
We support a history and context informed approach to distress that invites everyone to make connections between life events/situations and the various ways distress is expressed. Sense can (and should) be made of distress and we do not need scientifically unsupportable narratives of abnormality to provide explanation. Implicit within this paradigm is a move from ‘Illness & Diagnosis’ to ‘Personal Narrative and Understanding.’ We ask ‘what has happened to you?’ rather than ‘what is wrong with you?’.
Redundant therefore are ideas that distress (even extreme distress or psychosis) are:
We believe in the need for a move away from the concepts of treatment and cure to those involving helping people understand the impact of psychological injury and the role of many different types of adversity. We believe people experience a range of emotional distress including misery, a sense of failure, despair for the future, self-loathing, worry, loneliness, heart-break (and so on). These things can and do result in great suffering, but they are not illnesses. This medicalisation of distress is largely responsible for the unacceptably ineffective mental health services we currently have.
In support of the ERNI declaration, Dr. Sami Timimi (author and consultant psychiatrist) states:
“To clear up this abominable mess we must first rid our trainings, services, and culture of the pseudo-science that has delivered the diabolical outcomes we have where services are better at creating long term patients, being slowly poisoned by neurotoxins erroneously labelled ‘medication’, than alleviating understandable distress.”
How did it come about?
The original steering group have crossed paths in many different ways over decades. Some of us have been involved in creating new services which we hoped would offer something fundamentally different from “treatment as usual,” but where there was a sad descent to the same old ill-informed illness paradigm that has been ultimately ineffective in creating contexts where people feel validated in their experiences and getting on with their lives.
We were all experiencing what we now refer to as “ERNI moments” on a daily basis. These, we think of as waves of heart-wrenching panic when we realise that someone is being spoken about or defined in a way that will result in a negation of their experience, their reaction to experience, or their whole identity. ERNI moments occur in ward rounds, multi-disciplinary meetings, individual appointments with psychologists and psychiatrists, when watching documentaries on TV, when watching the news, when noticing a new book that has been published or a new support group.
ERNI moments infect our lives and make us feel that we cannot do anything to help share the idea that this is a fundamental human rights issue: people have the right to self-definition, and emotions (however they are experienced) are just what they are….not a symptom of disease, but a normal reaction to what has happened to people. Our frustration and ambivalence about whether we could ever make a difference has eventually led here.
We know (from many wonderful publications, research, and social media groups) that there are huge numbers of people who share the understandings we have, so we now hope to connect in as many ways as possible. The sad truth is that we had largely given up locally on sharing ERNI ideas with those who are invested (for many reasons) in the medicalisation in human distress. So, we decided to collect allies in order to allow each of us to fall back upon the number of signatories when we need to make statements to change how services run or how we are treated.
Introducing some of the ERNI steering group
Top row, left to right: Paul Blackburn, Anna Doughty, Chrissie Blackburn, Maddy Hurd. Bottom row, left to right: Kate Macdonald, Andrea Court, Emily Magowan, Cheyenne Heap. As the number of signatories grows, so too do the possibilities for using it to actively shape policy and care. We hope:
Individually, it allows like-minded people who access services or work within them to make visible how they think and how they will (and won’t) approach their work in the system.
To see ERNI registered organisations emerging.
That those who use services will ask their workers if they have signed the declaration.
That people using the services will request ERNI-registered practitioners.
To see commissioning of ERNI-compatible services.
There are already over 400 signatories from all over the world. Please help by telling everybody you know who you think may be ERNI-minded.
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