Speaking As A Survivor Researcher

Peter Beresford, OBE
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Academia has long been the official search engine for knowledge. Here supposedly are the ivory towers where seekers after truth, men and women intellectuals, teach new generations and carry out learned research, to add to the sum of human wisdom.

This is a powerful and seductive image, that even those of us who work in academia can’t entirely escape. But we also know that the academy is as tied to rank as the army, with as clear a hierarchy – from temporary research assistants to senior professors. It is as discriminatory as mainstream politics, with a dearth of black women tenured professors and a growing bottom layer of low paid ancillary staff increasingly marginalised by modern outsourcing economics.

Academia is like nothing so much as the world in which it is situated. We are now seeing the proletarianisation of its workforce and the overlaying of neoliberal managerialism on its structures, values, goals and culture. Even more to the point, it has a longstanding history of questionable relationships; from those with the arms trade, to continuing over-reliance on big pharma psychiatric research funding.

Yet as a long-term mental health service user/survivor (as some of us call ourselves in the UK), I am proud to work in a university and even prouder to have been promoted to professor as an out-survivor in the university. How come? Well, it’s because both the two opposing points I have made are true.  Universities do play a pivotal role in the production of knowledge, but also the work they do is often compromised by the economic and ideological realities that operate on them. So why should we as psychiatric system survivors just leave the space free for psychiatric discourse to continue to dominate as it long has? In the battle for knowledge, we cannot let the dominant medicalised discourse have it all its own way.

Don’t we have a responsibility to offer our students and academic research an alternative – such as that offered by ‘mad studies’? Jasna Russo and I, in our article in Disability & Society Between Exclusion and Colonisation: Seeking a Place for Mad People’s Knowledge in Academia, have already highlighted some of the issues. Robert Menzies and I, in our chapter entitled Developing Partnerships To Resist Psychiatry Within Academia in the important new text Psychiatry Disrupted, have made the case for challenging psychiatric dominance in the academy.

The emergence of organisations and movements of mental health service users/survivors internationally has changed the game. Now we know that there can be and are different kinds of knowledge and expertise. These are very different to traditional professional ones. We have begun to make it difficult for our own lived experience as mental health service users/survivors to be ignored or the experiential knowledge that develops from it, to be denied.

Of course there are still many barriers in the way of the inclusion and equal valuing of user knowledge and user-controlled research in the academy, but their momentum is growing and it is becoming more and more difficult to dismiss them. Mental health service user researchers are undertaking and completing PhDs. They are becoming more visible in the academy as both educators and researchers. They are publishing their findings, advancing new forms of both individual and collective knowledge. They are challenging what has come to be recognized as ‘epistemic violence’ and ‘epistemic injustice’ – where our knowledge has been counted for less than other sources of knowledge. They have called into question traditional assumptions about differential ‘knowledge claims’ and developed arguments that highlight the valuable contribution of experiential knowledge. (See It’s Our Lives: A Short Theory of Knowledge, Distance and Experience by Peter Beresford.)

No, we must no longer think of academia as out of bounds to us and our knowledge as survivors. Instead we should have the courage of our convictions that our lived experience has a real contribution to make to the development of human knowledge. We can see the survivors who are already advancing mad studies and disability studies within universities as an advance guard of a new kind of academic. This is an academic true to the founding principles of academia – to explore and share new knowledge, while equally committed to the aspirations of new social movements to advance people’s human and civil rights and challenge disadvantage and disempowerment.

16 COMMENTS

  1. For me, the issue with ‘academia’ is the nature of the social relationships and dynamics. Prestige, power, recognition, and *attracting followers,* seem to be what dictates action and direction, and which creates some pretty fierce and back-biting competition, over humble cooperation. That was my experience when I was in that world.

    That’s a lot of pressure that can easily derail us from the intention and goal–to alleviate suffering. That’s my main concern about accepting an academic perspective, it can really lack substance and grounding in the real world, because the goal is more to impress others, rather than actually solving the problem.

    Otherwise, all thoughts and ideas are welcome for consideration, of course!

    • “pretty fierce and back-biting competition, over humble cooperation”
      Unfortunately you’re right. When I was a student I have a rosy view of academia as a place where you can avoid most of the politics and interpersonal petty fights but the reality proved me wrong :(.

  2. As a person working in academia I wholeheartedly agree with everything you’ve written. The system is broken and the ivory towers are as full of cracks as any other place in society. We need a radical re-evaluation of our institutions and I hope that the rising awareness about it is finally going to transform into action.

  3. Speaking As A Survivor Researcher, I have to say that the last place I’d want to be is inside the mainstream priesthood, in modernity’s tower’s of babel. Where from my perspective of trying to expereintially understand my altered states of consciousness, I’d be corralled into affirming what is already known and actively discouraged from thinking outside the mainstream square.

    I’m reminded of classroom incident where my constant questions of the esteemed professor, was met with increasing anger. At which I voiced my defence of simply needing to understand. Which brought one those pregnant with possibility moments, when the professor shouted at me:

    ‘Your not here to understand, your here to learn how to pass an examination.’

    Sadly, because we accept our current landscape of an economy masquerading as a society, truthful moment was allowed to pass without inquiry, because the remuneration aim, is the name of the game.

    As a self-educated survivor I would encourage others to realize that they are, if on government benefits, in a unique position to explore “the tree of life,” as the kabbalists suggest, from the twin perspectives of knowledge and internal sensations. Which in my opinion will transform our understanding of human mental health, in the coming century.

    The epidemic of mental illness, may be happening now, not because of the influence of commercial power, but because, in terms of our historical journey as a sentient species, this is HOW we become more conscious, more fully human. An historical perspective that endorses R.D. Laing’s intuitive understanding that through the suffering of quite ordinary people labelled schizophrenic, not those of armchair comfortable middle class rank & status, the light will begin to break into our all-to-closed-minds.

    It is in this context of a need for true self-awareness that I write papers and upload them the free download site of Academia.edu with a lived experience perspective our vocation shaped worldviews: My Mad Behavior: Brain Disease or Adaptive Dis~Ease?

    A medical vocation, cloaks our mainstream perception of madness, not in words of understanding human behavior, but in the need of a public rhetoric that justifies a treatment methodology and attracts resource funding. A personal view from lived experience, which seeks to help broaden discussion about, The Paradox of Modernity.7 The paradox of an era of rising material wealth and rising physical and mental ill health, within the worlds most developed societies. Which from the perspective of the Buddhist society where I spent three years, experientially self-healing my mad behavior, seems to be created by a Poverty of Self-Awareness. A paradox of modernity which I humbly suggest, needs a serious inner contemplation of the existential notion that:

    We are all in a posthypnotic trance induced in early infancy. -R.D. Laing

    Because for me personally, Laing’s seemingly strange statement, speaks directly to the paradox of my previous faith in treatment oriented rhetoric and why I experienced psychoses, whether on or off medications. Contemplating this existential paradox, spoke directly to my conscious assumption that my ability to sight words and remember them, was synonymous with personal self-awareness. With Laing’s intuitive sense reflecting Buddha’s statement: words do not describe reality, only experience shows us truth. With my own inner contemplation exploring how an habitual fixation on sight and sound in our modern urban environments, creates an imbalance in sensory perception.

    Read more here: https://www.academia.edu/11296675/My_Mad_Behavior_Brain_Disease_or_Adaptive_Dis_Ease

  4. Thank you for your community service and support for the disenfranchised.

    My concern with academic research of mental health is that it generally accepts the prevailing paradigm of natural emotional distress from distressful experiences being a mental disorder. My research was purposely outside the academic community so that I could focus on the paradox of how painfully irrational emotional distress could also be natural, normal neurobiology. I do not believe that such a radical departure from accepted theory would be tolerated in academia.

    However, the problem with independent research is that I have now completed a comprehensive theory of biological psychology (systems neuroscience) and I lack colleagues to criticize its science. I contend that I have identified and solved anomalies of the scientific principles of current psychology theory and that my scientific understanding of mental distress is real science- better science. I hope that you will critique my science theory or offer an opinion on how to gain a critique; it is published online at NaturalPsychology.org.

    Best wishes, Steve

    • Hi Steve, its a good thesis, although I question the extent to which you stay within a conceptual framework, which does not, from my lived experience, provide the practical solutions to a self-regulation of psychophysiological distress.

      Although you mention the natural perspective of our body’d major organs, you seem to be endorsing the current misconception that our mind, is all about what happens within the brain?
      Even in Bessel Van der Kolk’s wonderful book about our susceptibility to trauma induced PTSD, he describes the brain as “the engine” of our humanity, whereas, from my own experiential resolution of spontaneous psychoses, I have found my heart to be the engine of all that I am. And the key to a practical self-regulation of our varied states of consciousness.

      As professor Stephen Porges points out, what is missing in our global mental health debate are the reciprocal influences between body & brain, which create our human consciousness. While the work of McCarty et al, at HeartMath is producing a new paradigm of understanding about our heart-brain connects, which is complimenting the kind of developmental science perspective, advocated by people like Allan N Schore.

      In terms of the practical reality of HOW my body creates my mind, and how I learned to master psychosis, the “organs” perspective you mention at beginning of your thesis, I describe like so: my resolution experience, after three decades of using medical definitions to try to understand my behaviors, as the lived-experience of the symptoms of my schi!ophrenia and bipolar affective disorder diagnoses. Came from broadening my personal knowledge base and changing my habitual attitude to all the subtle and not so subtle sensations within my body. Which essentially involves sensing voluntary/involuntary muscular tensions, and associated vascular pressures and spontaneous or withheld breathing. With a felt-sense awareness of the pressure/tension sensations of cerebral blood flow, in my various states of mind.

      While a more detailed explanation and referential material can be found here:

      Psychosis: Affective States of Consciousness & Nervous System Dysregulation

      ABSTRACT: With 34 years of lived experience, I present a middle path bridging psychology and psychiatry, based on research and discoveries in developmental science. An experiential understanding of psychosis, as a thermodynamic, psychosomatic process. Enabled by developing an embodied awareness of the “affect” driven nature of nervous system activity and the “role of visceral state and visceral afferent feedback on the global functioning of the brain,” (Porges, 2011) during episodes of affective psychosis. Since 2007, my normal and abnormal states of mind have been explored with an improving sense of the “bidirectional influences between peripheral physiological state and the brain circuits related to affective processes.” (Porges, 2009) A model of experience based on: The Polyvagal Theory (Porges, 2011) and the discovery of “an integrated social engagement system,” (Porges 2001) vulnerable to “affect dysregulation.” (Schore, 2003) A phylogenetic perspective on “A Traumagenic Neurodevelopmental Model,” (Read et al, 2001) with an understanding of traumatic experience and “the mis-attuning social environment that triggers an intense arousal dysregulation.” (Schore, 2003) With 7 years of experiential research focusing on “the primacy of affect” (McGilchrist, 2010) and the “primary process emotional/affective states,” (Panksepp, 2004) of my “innate affect” (Tomkins, 1995) driven imagery of consciousness, during episodes of “affective psychosis.” (McGorry et al, 2012)

      https://www.academia.edu/8013843/Psychosis_Affective_States_of_Consciousness_and_Nervous_System_Dysregulation

  5. Does no one else see what is going on here? Good grief. Has no one read the works of Thomas Szasz? Szasz was right to be equally critical of both psychiatry and that which came to be known as “antipsychiatry.” Those who have been subjected to psychiatric abuse and torture will find no solace in a “mad” movement or by working their way through the academic ranks of “mad” studies. It is absurdity, or as Szasz put it “Quackery Squared.”

    How is it possible to lump “mental health users” and “mental health survivors” into the same category? The alert citizen, whether or not he or she has survived psychiatric torture and abuse, could never consider himself a “user” of “mental health services” because the alert citizen understands that “mental health” is just as much of a myth as is “mental illness.”

    Would we call a Jewish holocaust survivor a “user” of Nazi “health services”? Would we call Jesus Christ a “user” of Roman “crucifixion services”? Was John the Baptist a “user” of “beheading services”? Perhaps Abraham Lincoln was a “user” of John Wilkes Booth bullet services.

    Wake up people. The real madness is to be found among the ranks of pseudo-scientific psychiatry and within the academic and pharmaceutical hegemonies that sustain it. The attempt to carve out a “mad” niche within the academy further ostracizes and further suffocates the voices of those who have genuinely suffered at the hands of psychiatry. To embrace the epithet of “madness” is to concede that those who survive psychiatric abuse and torture are actually crazy, when in reality those who are truly crazy, those who are truly mad, are the psychiatric overlords in the field and in the academy.

    Stop the madness, whether it be in academia, in psychiatry, or elsewhere. Slay the Dragon of Psychiatry.

  6. As a self educated psych researcher , survivor innovator, inventor , and creative etc , outside macadamia, as David Bates would say made possible by disability payments, not giving up , and necessity being the real mother of invention and discovery but with no place to enter input for consideration or adoption . Here I am like who knows how many others sitting on the outskirts with vital knowledge gained from a nucleus of lived experience.
    http://www.YuenMethod.com which looks upon the human so to speak as a biological computer with 6 different levels– spiritual, psychic ,psychological,physical, mental, emotional, where each level can effect any of the others. Well worth looking into in my survivor experience .

  7. Compromised as academia may be right now, just the same I would not criticize anyone who goes into it with an ethical attitude and a willingness to take risks to make the kind of change that should happen.

    I mean, having ANY kind of standard career puts on in a position of working in a compromised setting.

    The kind of people who really make me angry, though, are those who actually DEFEND the system in order to get a job. That isn’t what this article is about.

  8. Yes, It’s good to see another voice who has experience from “both sides”. (I include “Big Pharma” on the “academia”-side, since they benefit from fraudulent science)

    So, Peter Beresford, aren’t you ashamed over how researchers within the mental health time and time again display fraudulent behaviour at the cost of the end user?
    Don’t you agree that if they put themselves on an “Ivory Tower”, it is a basic requirement that they also speak out about the obvious false claims they surround themselves with?

    Next to being a willing particioner in a genocide, I see the gutless and cowardly “scientists”, who must know that their behaviour hurts thousands of patients to be, as equally guilty of crimes against humanity.

    Lobotomy, ECT, Barbiturates, Thalidomide, Benzodiazephines, SSRI’s (I have 17 years on Paxil) stacks up to a “genocide”, or two!

    To lie, and pray off of, a group that is percieved as inferior (we who seek treatment) in mental health, is just a low point in the history of man kind.

    And when we criticize them, we get brushed off with yet another diagnose.

    Sorry for my strong words, but we need even more outspoken people with experience from “both sides”.
    Ove, Sweden 2016