One of the issues that frequently come up in these pages, and in other places where institutional approaches to ‘mental health difficulties’ are discussed, is the discrimination (or stigmatisation) suffered by people identified as ‘mentally unsound’. Beyond individual accounts there are heaps of formal research data that point to damaging effects upon family life and access to housing, and upon friendships, intimate relationships and attitudes to childcare. There is continuing discrimination in the workplace and in healthcare settings. Media portrayals remain obdurately stigmatising, and in some jurisdictions people with ‘mental illness’ continue to experience formal restrictions on jury service, voting rights, holding public office, travel or holding a driving licence. For many, these consequences of being identified as someone with a mental health diagnosis are far more damaging than the experiences that led to such a ‘diagnosis’ in the first place.
Not only is all of this far more than just a little problem for those directly involved, it is a conundrum to those attempting to understand what is going on and do something about it. During the early years of this century the British Royal College of Psychiatrists energetically promoted an ‘illness like any other’ approach, in a well-meaning attempt to ‘Defeat Depression’. Effectively it backfired. Public attitudes towards people with mental illness in England and Scotland actually became less positive during that period, and other formal research has confirmed that similar attempts to defuse concern about mental health difficulties by identifying them as medical problems to be ‘treated’ have had similarly unhelpful effects. The so-called medical model brings with it assumptions of incapacity or incompetence, paternalism and expectations of compliance with ‘treatment’. All of these can be socially damaging. As many who contribute to, and who follow these pages often emphasise, it is not disturbed or disturbing mental states that are the main problem, but how they are understood and responded to by others.
In June 1990, the Los Angeles Times reported on a conference that had taken place a couple of months earlier in Worcester MA, in an attempt to answer the question, ‘What is Schizophrenia?’. Apparently the first speaker offered to list the established facts, and then projected an empty slide. Wry laughter rippled through the assembled experts. These included Manfred Bleuler, son of Eugene Bleuler who had coined the term in 1908, and some twenty other acknowledged experts; prominent psychiatrists, leading psychologists, renowned social scientists, anthropologists, philosophers and historians.
There was no consensus, other than to agree that the phenomenon ‘Schizophrenia’ resists a clear definition. The exchanges uncovered multiple, often conflicting uses of the term. For some of those present at the conference, it seemed to refer to certain kinds of people, for some, to certain kinds of behaviours, for others, to the consequences of certain biochemical events, and for some, to comprehensible psychological strategies. A notable strength of the colloquium was that participants were able to contribute from these differing perspectives in an atmosphere of mutual respect and curiosity. As a result, their collective answer to ‘What is Schizophrenia?’ had to be “We don’t know”.
There were many opinions but these reflected differing positions, research traditions, world views and, significantly, differing approaches to more fundamental questions such as, ‘What is knowledge?’, or ‘Are certain forms of knowledge more privileged than others?’ Answers to questions such as ‘What is Schizophrenia (or any other form of ‘mental illness’)?’, ‘What do we know about Schizophrenia (or any other form of ‘mental illness’?)’, or ‘What is the best way to respond when someone experiences mental health difficulties?’ depend more upon who is asking or answering them, why they are asking, and where and how the knowledge in question was generated, than it does upon the accuracy or validity of what is put forward.
This matters a lot. An acutely distressed person might generate a range of responses: “They are obviously having a hard time and deserve a little more care and attention”, “That person could be dangerous and should be put away.”, “This is nothing a few weeks in hospital on an anti-psychotic can’t sort out.”, “This is the clinical pathway we follow under such circumstances.”, or they might react with “Help!” or “Leave me alone, there is nothing wrong with me.”. Each of these reflects how psychological distress is understood by those encountering or experiencing it, and as the 1990 ‘What is Schizophrenia?’ conference illustrated, what that might be depends heavily upon who you are and where you are coming from.
This goes for formal research as much as it does for less institutionalised ‘knowledge’. Investigators tend to publish and communicate within their own sub-field; neurobiology, psycho-pharmacology, cognitive science, social psychology, sociology, and so on. This is not peculiar to the study of mental health difficulties. It is a feature of systematic, formal research across all fields of enquiry, and it reflects the fact that the growth of ‘knowledge’ is collective, slow and incremental. An investigation builds upon its predecessors. One experiment, survey or review will establish some facts and reveal new uncertainties. These are then, in their turn, addressed by a further investigation. Truly new knowledge only emerges by carefully looking again at what has already been agreed, and how those interpretations might be criticised and reworked. Every doctoral student discovers this, and, equally, discovers that their success is going to depend upon becoming deeply immersed in the details of what is already agreed within their chosen, narrow, self-contained field of study.
Inevitably this process generates and maintains communities of narrow specialism focused upon this, that, or another area of knowledge which are relatively isolated from one another. Individual participants might be aware of, and may even respect others’ fields of interest, but the business of conducting genuine, cutting-edge research is inescapably carried out by relatively small, tightly focused communities of interest which exclude most people who are not, and cannot be, party to the necessary level of detail. This is of little concern in esoteric areas such as theoretical physics, astronomy or archaeology, where findings and opinions have limited impact upon everyday life. In contrast, medicine, psychology, climate science, economics, and engineering, for instance, all have direct effects upon the lives of those who are not necessarily fluent with their fine details.
For most people, what they ‘know’ about this, that or another aspect of these and similar enterprises is a simplified digest of what they believe the most knowledgeable are currently considering. As such it tends to overlook underpinning uncertainties and the nuances of debate among the cognoscenti who are attempting to resolve them. Rather being either ‘right’ or ‘wrong’, what we encounter in everyday life is an economy of opinions in which different views are expressed and traded, differentially valued and differentially respected. What emerges in any one context is the outcome of interactions between people sharing or contesting one another’s views (what is known in the trade as symbolic interaction).
In relation to mental health difficulties this offers an understanding of why any one distressed or disturbing person might evoke a range of differing responses, depending upon the community they live in, the attention they have attracted, perceptions of their background and so on. Clearly, this influences whether they are regarded as ‘ill’ or as distressed, whether they might be considered dangerous, incapable, threatening and so on. It also offers a way of unpicking another major conundrum facing the mental health research community.
For years, at least since the Chicago studies of the 1930s, mental health difficulties have been known to have a social geography. That is to say, the risk of being hospitalised, of acquiring a mental illness ‘diagnosis’, of being treated without consent or suffering other consequences of ‘mental disorder’ are all associated with socio-demographic variables such as racial background, migration status, neighbourhood of residence or ‘social class’. In recent years this has hardened up, as information technology and population data have converged to allow larger and more convincing studies.
The result is a set of findings which have yet to find a satisfactory explanation. Family background, ethnicity, migration status, city life and challenging living conditions are all robustly associated with the risk of being troubled by ‘psychotic’ experiences, as too are adversities in childhood and significant life events. This epidemiology of mental disorder has benefitted from considerable research funding, fuelled numerous academic careers, and populated a great number of research publications and conferences. It is an established feature of mainstream mental health research, and yet it still has little impact upon mainstream mental health services. Recent decades have seen general acknowledgement of a relationship between abuse in childhood and adult ‘mental health difficulties’, with welcome attention to safeguarding and prevention.
There are many voices articulating the need for politicians and others with influence to act against growing levels of material inequality, but these tend to fall on deaf ears. Although there is now a mountain of largely undisputed data identifying relationships between social circumstances and psychological well-being, it has yet to find widely applied traction in terms of policy and service provision … again, a frustration commonly expressed in these pages and similar commentary.
Might this be because we are barking up the wrong tree? Where it is considered, the social geography of mental disorder tends to be seen in terms of ‘Stress’ or of ‘Social Isolation’; that these vicissitudes in some way lead to mental health difficulties. Stress, social isolation and other hardships undoubtedly cause distress, but another widely voiced concern about mainstream mental health services is that distress, per se, is not necessarily an illness, with all the consequences and paraphernalia that implies.
As it is well rehearsed, the consequences of being identified as someone with a ‘mental illness’ are commonly as disabling, if not more so, than the difficulties that led to that in the first place. Perhaps we should be looking more closely at how, where and why that labelling happens. There is nothing new here … Thomas Scheff, for one, has been banging on about it since the 1960s, but the more recent emergence of a widely acknowledged social geography of mental disorder demanding explanations in recent years introduces a further stimulus to this perspective.
Socio-demographics reflect where and with whom people spend their time, who they feel comfortable with, and can trust, and who they might feel uncomfortable with and may not trust. People’s interactions with one another are patterned. They live in a particular neighbourhood, they do or do not go to work and associate with others in a relatively predictable way. Mostly they live with one another, they belong to clubs, go to church, mosque, temple or synagogue, socialise and so forth. Their respect for authority and established institutions varies in fairly predictable ways.
If we accept (as symbolic interactionists do) that individuals’ understandings of the world, including what it means to be experiencing psychological distress or exhibiting disturbing behaviour, is the outcome of their interactions with others, good or bad, then there is scope to suggest a connection. Put simply, socio-demographic variables imply particular patterns of human interaction, and how ‘mental health difficulties’ are understood will reflect those interactions, and is likely to differ, subtly, from context to context in ways that reflect those patterns of interaction. This is a testable hypothesis which could generate productive research focused upon how individual understandings of psychological distress differ from place to place, and how they are generated and maintained.
It is tempting to suggest that the pharmaceutical industry and others that feed off their profits have been on to this for some time, but they exploit it as marketing rather than open, constructive research. They, after all, have a transparent interest in encouraging medicalisation even though there is a lot of evidence that in the long term this is unhelpful.
Many thanks, Dr. Middleton. My own experience of being processed through the U.S. “mental health” community has been a mystifying and crazy-making experience in itself. I long wondered why each psychiatrist, psychologist, therapist and university lecturer held him or herself to be an objective purveyor of truth beyond all questioning, yet they each differed substantially as to the diagnosis that should be applied to my “case.” I have a string of diagnoses that would rival the string of lettered degrees of any and all of them. After reading your article, it is now much clearer why this is so. I thank you again. And I shall go on my merry way much less distressed about the entire process.
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I lost most of my social connections due to having undiagnosed akathesia, which the people around me all interpreted as mental illness. They got tired of the second-hand embarrassment of seeing me taken away by the police. They thought I wasn’t trying hard enough.
I won’t ever give psychiatry a pass as though what they did to me was done with the best intentions based on the best research. It was based on the fact that I was annoying and inconvenient from a young age, to my family first and then to outsiders including professionals. That coincided with psychiatry feeling bad that they weren’t real doctors like the other doctors and the onset of HMO insurance plans and then a bunch of drugs coming on the market (thanks to greedy pharma and an FDA that fell down on the job, no surprise) that were supposedly safe and effective solutions to the chemical imbalance that people like me were supposed to have had. Then if all of that wasn’t bad enough, they did ECT and then put a borderline diagnosis on me. At some point, it became too much to come back from. That part was intentional too, so that I would never be anybody to anybody and therefore have less chance of ever filing a successful complaint.
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Thank you for posting. My experience was similar. I am now estranged from my family, my choice. They “wanted to help” but would not listen. They wanted to “be there for me” except in body, mind or spirit. The disconnect is now complete.
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Thanks, Donna. I think that’s the right choice for many of us — to protect ourselves from the original wound.
I didn’t talk to my mother, who is 87, for a year because she kept calling me mentally ill. She lives across the country and we’ve only seen each other once in 15 years. I got back in touch with her recently by phone because of my son, who’s going through a very hard time, but it’s dragging me down for sure. She seems to have gotten meaner. I think a part of me had hoped that she’d change at the end of her life but she’s actually gotten worse, putting me down in every conversation and not even aware of it.
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You are someone to me. In a small part someone who writes clearly.
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Thank you so much, 27/2017.
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“In June 1980, the Los Angeles Times reported on a conference that had taken place a couple of weeks earlier in Worchester, MA, in an attempt to answer the question, “What is Schizophrenia?”
Why didn’t this collection of assorted idiots just ask some “schizophrenics” what that label meant TO THEM???
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Amen.
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🙂
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Clarification: …what BEING SADDLED with that label meant to them.
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These “symbolic interactionists” would have better luck chasing ghosts.
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This is a stupid article. Everyone knows that life is tough and can drive you crazy.
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Everyone knows that but many simultaneously believe in “mental illnesses” devoid of all context. Thus proofing human beings can believe two completely contradictory things at the same time.
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That doesn’t mean they aren’t also stupid.
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“Not only is all of this far more than just a little problem for those directly involved, it is a conundrum to those attempting to understand what is going on and do something about it.”
The experts who have been feeding the stigma and benefitting from the stigma forever are not the ones to do something about it.
Case in point, there is a conference about borderline personality disorder at Yale Medical School every year. The theme of a recent conference was “BPD and Disruptive Behaviors”. Apparently the upcoming conference is going to have a theme of reducing stigma around BPD. See the problem? Anyone who doesn’t see it probably doesn’t see it because they work in the system.
How much research is needed to understand things that should be obvious? It’s too bad the experts can’t hear the stigmatized people. Those are the people who can explain it. They’re the ones who are jobless, houseless, friendless and hopeless because of it. Maybe if the experts faced those risks they would have a better success rate at doing something about it, but they just get more grants to do more studies and have more conferences.
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Clearly the “experts” haven’t learned much since 1980, which in my opinion is why they have yet to give up the DSM. And why should they when it provides goodies like money, status and power? It’s a pretty nifty ecosystem. Just the same, someone should tell these fools that that the only way to end BPD stigma is to for them to lose the acronym, along with the whole damn DSM, which is the source of so many “toxic interactions”.
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Might be “easier” to tell someone what their problem is than finding out what problem they face.
Someone else’s problem might actually be me.
Better muzzle that, I don’t want to be told clearly I am part, huge, of the problem, or that it is my responsability to do something effective about it, or that I am making it worse. Like a priori restraint.
The BPD label on ones mouth to make words, eloquent ones, into mutterings.
Even if my adding to the solution it’s just let it go and accept I am making things worse.
That sounds like psychiatry to me. Mutteringing, coercive, irresponsible, irrational, uncaring and recalcitrant…
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“Individuals’ understandings of the world…is the outcome of their interactions with others, good or bad” because our nervous systems and the architecture of our brains are greatly shaped by Interpersonal Neurobiology, particularly during development, but also through the lifespan.
In the Interpersonal Neurobiology view, “We can define both the mind and healthy minds as emerging from integrated relationships and integrated nervous systems. Instead of simply labeling disorders and listing symptoms, we can now have an overarching framework in which impairments to integration are seen as the cause of this movement away from harmony. We can reframe the field of mental health to actually focus on mental health–on integration–and then have a natural view of how impediments to integration–whatever their cause–results in various forms of difficulties.” – Dr. Dan Siegel, “The Neurobiology of ‘We'”
Some say if the DSM acknowledged Complex PTSD (usually from Developmental Trauma) it would be a thin volume. The American Psychiatric Association seems to support this by default. The APA’s Diagnostic and Statistical Manual (DSM) maintains a very narrow description of PTSD to suppress the fact that virtually all mental health conditions are rooted in trauma, particularly Developmental Trauma, which is the number one health crisis in the world. Psychiatry suppresses vital information about the number one health crisis in the world. Why I go for the neuroscience.
Many trauma experts recommend both “top-down” (cognitive) and “bottom-up” (somatic) modalities. Unfortunately, few healthcare providers can offer the latter. It seems even fewer can be in their own bodies and emotions well enough to prevent them from thwarting their clients’ processes.
Learning the basics of the neurobiology of trauma and recovery offers powerful options for recovery. As a survivor of extreme Developmental Trauma, I have used it to save my life after the standard treatment for PTSD nearly killed me 5 years ago.
Complex Trauma occurs in harmful relationships and safe relationships are necessary for recovery and maintenance. This is a biological imperative.
In a nutshell: parental cruelty and contempt are potent and enduring neurotoxins. They change the architecture of the brain and function of the nervous system. A dysregulated (hypervigilant/tuned toward threat detection and protection) creates dysregulated emotions, thoughts, behaviors, relationships, and body systems. This internal distress makes us feel like we’re going crazy (when it’s our environment that’s insane). It is expressed as unwanted behavior, distressing thoughts, recurrent pain, mental health issues, chronic illness, and poor relationships. These are all symptoms. Support the nervous system so it can regulate and the symptoms fade. Nervous systems are regulated by safe environments, particularly those that include appropriate psychosocial support. The latter is increasingly rare in our culture of cruelty and contempt. Fortunately, we can choose to create circles of safe connections around us. We are the healing wave. #TraumaAwareAmerica
Here’s a video in case you’d like to know more.
https://youtu.be/E7ryr90rW_M?si=16CDKcmPdJ0iqqDF
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I relate to this comment.
I grew up in an extremely stressful household where contempt and cruelty were the norm. There were also repeated instances of life-threatening violence as far back as I can remember, happening at a time before things of this nature were acknowledged, publicly or privately. My siblings and I never talked to each other about this nor (as far as I know) mention it to outsiders.
My nervous system is still in the process of calming down from this, and the psychiatric medications only added to my inability to relax. On top of all this, the main offender had the habit of playing loud rock music all day and late into the evening. Between that and the tv on almost constantly, I could never completely relax. My mind and body are still in the process of settling down from the horror of it all.
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“Some say if the DSM acknowledged Complex PTSD (usually from Developmental Trauma), it would be a thin volume.”
I think trauma experienced at any age can lead to significant problems.
“Many trauma experts recommend both top down (cognitive) and bottom-up (somatic) modalities. Unfortunately, few healthcare providers can offer the latter. It seems even fewer can be in their own bodies and emotions well enough to prevent them from thwarting their clients’ processes.'”
Somatic therapies helped me a great deal, but finding an affordable practitioner wasn’t easy. Talk therapy was re-traumatizing. Not only that, most of the talk therapists I knew were egotistical, which I think you have to be to want to be a therapist in the first place.
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I can’t agree that “parental cruelty and contempt” for me actually “damaged” or curtailed my mind, let alone my brain. Even if they caused suffering. I was abussively broken a bone, that hurt a lot, and really can’t tell anyother difference, no other effect.
Most honest comments about my personae, my mask to the crowd are overwhelmingly positive. That I refuse to be intepreted as “the tragedy of the gifted child”. We all are and were gifted in that regard.
I always refused to accept or believe I am “special”, the me behind the mask, I believe strongly I am like anyone/everyone else.
Everyone else is part of who I am. Introjected from their mere kindness even if there was “parental cruelty and contempt” all the way until now. And then some.
I don’t think I am THAT different from everyone else. But I can see how false ideas, beliefs that can’t be proven nor disproven, merely interpreted and believed or not, not argued about, can lead to the wrong conclusion that at least MY behaviour is caused (!?) by cPTSD.
I say nonsense, I take no product of hermeneutics, of interpretation as an argument, reason, truth nor explanation.
Epistemic fairness is a core value to me, my balance of reason to judge ideas needs to be fair, has to have equity*: There are truths, there are narratives and there are interpretations.
I take truths to reason about. I take metaphores and interpretations from art, from the humanities if at all. I take narratives to feel alive!, and sometimes the same as everyone/anyone else. To try, still, to remain the same as anyone, everyone else: our shared humanity. Like a dignifying act by seeing myself in others, and others in me…
Intellectual honesty and congruency for me. Basic epistemics in my mask and me inner me me.
* I cannot take beliefs as truths. I don’t take constructs as objects manipulable, operatable with my reason, with logics. Nor interpreations from constructs as reasons, as causes, scientific ones at that!: like if they were gravity, even probabilistically…
The apple fell by the will of God is an interpretation. It fell because of gravity is a reason, a scientific one at that. And that IS an explantion, a cause.
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You mention the importance of “parental cruelty and contempt”, but there are people whose painful or even traumatic experiences have been caused e.g. by bullying at school. I think that there is a tendency to overlook the “cruelty and contempt” of people who are not our parents.
In my own case, I started being rejected by my peers at a very young age and without understanding why. E.g. at school I was the only girl who did not have any friends and was not invited anywhere by the other children.
Because of these experiences I learnt to assume that people were going to reject me and I was always surprised when they did not. I felt grateful to people who accepted me, including people who acted in an abusive way. In my 30s I had a psychotic episode when I felt rejected by a man I deeply loved and who was also my only friend at that time.
I have started unlearning the fear of being rejected by other people only quite recently (I am now in my 40s). So childhood trauma is not always caused by the behaviour of parents – it can be caused by the behaviour of other people, too, including other children. Let’s not assume that parents are always or almost always the ones to blame for people’s mental health issues.
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My comment kind of did not fly without explantion.
Here is the link:
https://pastebin.com/Z44gXZ1r
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“…had similarly unhelpful effects”, seems like an understatement from the first part of that paragraph. Like a concealment.
“… compliance with ‘treatment’”, not only that, but with unreasonable and false expectations from society and resignation to abusive behaviour by the community and family.
Take the “manipulatable character” of people with psychosis: the family and the community exploit that to have a sense of “control” over their irrational fear that people with SMI are MORE dangerous than said family and community.
That sort of manipulation can be enraging and dispairing for the sufferer. It might encourage provoking the sufferer into rage, into lashing to prove a “see, he is dangerous!, can’t be dealt with!, he needs to be institutionalized!.
I have no trouble imagining that in a lot of settings…
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As an intellectual prodding: What evidence requires to go from “We don’t know” to “We can’t know, honestly”?.
How does one falsify schizophrenia, at least?.
I don’t think a diversity of perspectives or expressions leads necessarily to the conclusion that understanding is possible. It’s at least confusing instead of guiding, science is simplifyng by generalization, even if it comes from multiple inductions.
Having multiple religions really has not made understanding of God possible from the multiplicity. On the contrary, it lead many of us, atheists, to conclude it does not exist, it’s not real. It’s useless for our lives, even if for some brings comfort, guidance, understanding, protection, enlightnment and yes, knowledge about the divine.
Touching blindly that elephant lead to inconsistencies that strengthened atheism. The death of God.
How is schizophrenia different?. Because the priests and theologians of it think it so?. Faking it until making it?.
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That description of the accretion of knowledge, the selection of the true facts only works when there is a theory to accumulate them into, that is real science, not empiricism. That process is still lacking and will be for schizophrenia. That only happens when a paradigm has been proven beyond doubt…
The narrative started somehow with a blank page: no theory. Accumulated constructs are not a theory, at best a model. A narrative, a tale about something immaterial, unreal, lacking objectivity, invisible to the minds eyes. Prone to faith, creed and dogma. Impervious to reason…
Narrowing on the details is a form of deluding oneself that the details are meaningfull. And prevents doing something else effectively on sunk costs basis. Too much time spent on the details to back off now…
Clearly pointed for “theoretical physics”?. Cars fly, literaly on that esoteric form of thought.
Is that not a projection?. A Freudian slip?.
The “big one” was built and inspired from “theoretical physics”. As nuclear reactors, MRI machines and radiotherapy equipment.
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“… what that might be depends heavily upon who you are and where you are coming from.”, like The belief in and reverence for a supernatural power or powers, regarded as creating and governing the universe. …
“…growth of ‘knowledge’” in that paragraph seems to assume knowledge has grown in a meaningfull way. That sounds to me mere accumulation of revelations with no basis in reality as to the divinity, the spirituality of schizophrenia, not it’s science.
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Understanding is a feeling corroborated as correct, as real, by providing an explanation.
A paraphrasis, correct responses, accurate empirical predictions with a theory behind all of it.
I see the blank page rearing it’s head, again.
The geography and demographics of “mental disorders” might have more to do with exposure to predators than intrinsic qualities of preys.
Has any applied mathematician looked into that: build a mathematical agnostic model of psychiatric incarceration?.
Because I know of at least one article that claims that proximity to A psychiatric hospital increases the chances of demise by own hands.
It sounds to me that the testable hypothesis proposed removes agency from individuals. More of the same in different disguise, from a diverse perspective. Like there is no human model, let alone a theory to build hypothesis from any humanities perspective.
And the whole narrative looks to me like finger pointing without looking into the mirror and admit: I can’t do research on this thing. It does not exist beyond my constructs. Mere constructs do not lead to science.
Schizophrenia and it’s concepts have not been proven to exist independently from the human mind, regardless of try and effort, therefore those concepts lack objectivity and therefore are not addreasable, manageable, treatable with science, it’s contents and it’s methods. Period…
Searching persistently for the inexistant can last an eternity…
The we have to do something includes doing nothing if it comes from accurate reasoning.
(blank space)
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