Peter J. Gordon, (2012),”Window tax“, Mental Health and Social Inclusion, Vol. 16 Iss: 4 pp. 181 – 187
Purpose of paper: The purpose of this paper is to discuss concerns that, despite recent campaigns, stigma has not been fully addressed by the psychiatric profession and that evidence suggests it may have unwittingly contributed to iatrogenic stigma.
Approach: The writer of this paper is a psychiatrist and considers the subject of stigma by employing the metaphor of bricked up windows. Arguments are supported through the evaluation of scientific research in addition to ideas from philosophy and literature.
Findings: This paper highlights areas of ongoing stigma and also identifies possible explanations for this in the current approach of the psychiatric profession.
Practical implications: It is hoped that this paper stimulates further discussion particularly within the psychiatric profession about our approach to tackling stigma.
Originality of paper: This paper re-visits the subject of Iatrogenic stigma ten years on from the Editorial published in the British medical Journal, by Professor Norman Sartorius. The assumption of the psychiatric profession is that, by giving prominence to a biomedical view of mental illness, stigma will be lessened. This paper challenges this view and widens the discussion.
Daylight robbery
The term “daylight robbery” is thought to have originated from the window tax as it was understood by some as a “tax on light”. In Scotland the Window Tax was imposed after 1748 as a tax based on the number of windows in a house. It was a significant social, cultural, and architectural force during the 18th and 19th centuries. To avoid the tax some houses from the period chose to brick-up window-spaces. This essay is not about the window tax but rather about stigma surrounding mental illness. It is my contention that in our well-intentioned attempts to address stigma we have in fact blocked up many windows and thus blocked the light that might bring fuller understanding of suffering.
In this essay I will cover stigma from both within and outside the house. The house represents the psychiatric profession. It is now ten years since Professor Norman Sartorius wrote an Editorial in the British medical Journal on Iatrogenic Stigma (Sartorius, 2002). This essay revisits the subject.
Phelan et al (2008) found three major functions of stigma and prejudice: norm enforcement (keeping people in); exploitation and domination (keeping people down); and disease avoidance (keeping people away).
The term stigma refers to a mark that denotes a shameful quality in the individual so marked. Mental illness is widely considered to be such a quality. Goffman (1963), in his classic formulation, defines stigma as ‘an attribute that is deeply discrediting’ and proposes that the stigmatized person is reduced ‘from a whole and usual person to a tainted, discounted one’. In Goffman’s view, stigma occurs as a discrepancy between ‘virtual social identity’ (how a person is characterized by society) and ‘actual social identity’ (the attributes really possessed by a person).
This essay will be a personal exploration of stigma and its effects. I only ask that readers should not be dismayed at the discussion of history and philosophical matters alongside the more traditionally scientific and pragmatic (Collins, 2012).
I have studied, written and made films on the subject of mental suffering for many years now. My interest is not just that of a psychiatrist (which I have been for the last twenty years), but also as an individual who has in the past suffered from depression. My greatest inspiration however is an older sibling who has endured lifelong mental suffering. I have shown this essay to my sibling and we are both happy with it as a small contribution to the consideration of stigma. I must tell you that I did consider keeping this essay to the generalities of prejudice but decided that eliminating the personal fails to illuminate what is most at stake when faced with stigma.
In Scotland, one of the leading campaigners against stigma, a psychiatrist himself, stated in response to an article in the British Medical Journal in June 2002 that it ‘[presented] a misleading picture of UK psychiatry. 21st Century British psychiatry seeks to be open, inclusive and pragmatic – and has arguably made more progress in user consultation and involvement than any other medical specialty’.(Smith, 2002). Ten years have passed since this claim was made. It did not ring true to me then and it is not even a dull clang today. There is no meaningful ‘user’ interface with psychiatry. Here it seems to me the house is in darkness and misses the light that the user, sufferer, patient, carer or client can bring.
When I think about stigma my mind returns to the legendary debate that took place following the 1959 ‘two culture’ divide raised by C.P Snow. This divide between the humanities and science many consider has only widened in the half-century that has since passed. The tussle between two rightful disciplines can emerge as highly stigmatising and the real ground, the reasonable middle ground of the medical humanities, often seems to miss out. In a narrative that is complex, biological explanations for mental illness have emerged – in good part due to the discovery of efficacious psychotropic medications – as dominant over this same time period. In this surge towards individual explanations of illness based upon the disembodied faulty brain, the consensus has been that biological explanations of mental illness have helped to reduce stigma.
In the years that have passed since this debate, the prevailing understanding is that mental illness ‘is an illness like any other’ and further that if the causes of mental disorders were attributed to factors outside the individual’s control, people’s reactions to those with mental illness would be less negative. Matthias C. Angermeyer and colleagues identified 33 research studies that had looked at ‘biogenetic’ explanations of mental illness and public acceptance of mental illness. In their systematic review of these population studies they concluded that generally, biogenetic causal attributions ‘were not associated with more tolerant attitudes; they were related to stronger rejection in most studies examining schizophrenia’ (Angermeyer, 2011). However, it seems to this writer, a practising doctor and psychiatrist, that very few of his colleagues would agree that the disease view engenders a less favourable estimation of the mentally disordered than the psychosocial view. These are the same doctors who rate meta-analysis – such as the Angermeyer study – as the pinnacle of evidence based medicine. Are we seeing an effect where we unwittingly exhibit a bias due to prior beliefs and thus potentially undervalue any evidence that is not confirmatory of such? (Goldacre, 2009).
It is time that we gave an equal voice to the mentally ill and insist that the content of their suffering is not relegated as secondary. Furthermore philosophical ideas must not be seen as wayward light: for they can be applied to clinical practice when they can be shown to be personally meaningful. At a wider level philosophy allows light more room, and so allows us to question the wisdom of adopting a superficial, unengaged ‘biologism’ as the only imperative in mental health
When the Scottish author Candia McWilliam went blind she wrote: “I write because words change one another when they lie together. Because words change things. They make people see” (McWilliam, 2010). To me, it is blindingly obvious that the story of the sufferer must be heard, in order that the suffering is understood.
Keeping people in (Herd instinct)
A professional colleague of mine once wrote to me following a difficult experience: ‘I guess if we are to tackle stigma in mental health, we need to start closer to home in our colleagues’ (Anon, 2012). Although it is uncomfortable for me as a practising psychiatrist, it is necessary to examine the potential contribution of my own profession to the apparently indelible stain of stigma.
I come from a family of shepherds, drovers and whisky smugglers from the north east of Scotland and perhaps this may explain to you why I prefer here the more commonly used ‘herd instinct.’ This term describes the tendency to associate with others and follow the group’s behaviour. Consequences of this approach include tight definition of the herd, perceived acceptable behaviours for members of the herd, perceived unacceptable behaviours for members of the herd and consequences for non-conformity. It was the Danish philosopher Kierkegaard who introduced the idea of ‘authenticity’ and contended that there was public pressure to conform to society, which led to ‘inauthenticity.’ In The Unquiet Grave by Palinurus (Connolly, 1944), the protagonist railed against those who would undermine the irreducibility of man. To the physiologists, he said: “I am not a cell, but myself”; to the sociologists he said: “those who lack the herd-instinct are generally in advance of the herd which is conservative, stupid, intolerant and bourgeois.”
I would hope that we have room for light: the light that the ‘user’ brings and the wider social and philosophical light that the medical humanities insist we consider. In talking in terms of light I am reminded of Candia McWilliam and her experience of medicine when it came to her condition blepharospasm (‘functional blindness’): ‘These expert doctors are of the firm, committed and explicit opinion . . . though I am not sure which is the case, but suspect a category error in any hard and fast distinction’’ (McWilliam, 2010, p39).
It is possible that as a doctor that I am making my own ‘category error’ in my surprise at how unchallenging our profession is of the divide that has been upheld between biology and humanities. My own view is that in recent times the humanities have been overwhelmed by biomedicine. I believe, most simply, that we need both.
In considering the ‘herd instinct’ I want to say that I agree that this is a term which is in itself stigmatising. Nevertheless, I would argue it is useful to look at the general contention. To add light here, I will explore two particular situations of my own arising within this generality. I have no doubt that you as readers have your own examples, but for the purpose of this account I wish to talk about (1) the ‘herd instinct’ and classification of mental ‘disorder’ and (2) the ‘herd instinct’ and early-intervention.
A recurring consideration for me is to try and find middle ground between the need for pragmatic classification of suffering and the risk therefore of ‘seeing’ us all as ‘disordered.’ It was with this consideration in mind that I spoke up at a recent Royal College of Psychiatrists meeting about Classification. At this meeting the older generation of psychiatrists unanimously expressed their concern about the forthcoming classification of the fifth edition of the Diagnostic and Statistical Manual (DSM-V) and their unease about the potential harm of over-medicalisation. In the realisation that there were several generations of psychiatrists at this meeting who had treated my sibling, I raised my concern that classification (free of any appreciation of narrative) might limit understanding of illness and indeed might actually hamper useful and conclusive research. My challenge was based on the insight of a brother who realised that the doctors treating his sibling had but a chink of light into the context of his sibling’s suffering. My concern was and is that this chink of light is only diminished by an evidence base which has only considered the biomedical.
Several months passed from this meeting and unexpectedly I received feedback from a colleague who, whilst he had not been at the meeting, felt able to tell me that my contribution to the discussion on classification had been considered ‘inappropriate’ for such a professional meeting. I do wonder why my narrative resulted in my exclusion from the herd. Why was this so threatening? If as a professional with a need to question I feel so easily excluded, just how further separated must our patients feel? My sibling later expressed the same bafflement.
Early intervention is my second example of ‘herd-instinct’. The medical model has a tendency to examine the world through a microscope where light is artificial, and where any such illumination is confined to the pathological. To consider early intervention properly requires a social, ethical and philosophical perspective.
Mankind must proceed carefully with early intervention, well-intentioned as it is. My professional remit covers the ageing person and our vulnerability to loss of short-term memory alongside the serious potential for this to progress to dementia. However given the illumination by microscope my fear is of a world that may come to regard most of our ‘elderly-old,’ as pathological. In a sense, we have here what some have termed the ‘death of old age’ (Higgs & Rees Jones, 2009) My concern here is very real and is based on highly replicable research findings that have repeatedly shown that a cohort, far greater than half, do not progress from early memory loss to clinical dementia.
My fear is that the herd can get confused in what it means by “early”. Conflating “early memory loss” (a common finding in elderly folk), “early Alzheimer’s disease” (a pathological diagnosis which cannot yet be reliably detected pre-mortem) and “early dementia” (which is what we are really looking for) leaves our profession at risk of the pitfalls which have beset other “early interventions”.
I have no wish to stigmatise my profession any more than to stigmatise myself. However I remain convinced that we must not stifle discussion and debate about vitally important issues for society and health. It has been my experience that raising this issue has resulted in me feeling that I am watching the herd from the other side of the fence.
Keeping people down (Diagnostic lens)
For this second consideration we will be looking through a lens that brings part, but never the whole, into sharp focus. Underlying all forms of discrimination, including psychiatric stigmatisation, is an exaggerated attribution of ‘other-ness’ to certain individuals or groups. Here there is an assumption (made by the discriminator) of the existence of fundamental differences between himself and ‘the other’. Considering this, perhaps we have a seemingly insoluble problem as classifications of ‘disorders’ immediately labels us into some or other category of ‘otherness.’ (Sartorious, 2002).
I imagine that every living one of us has had some experience of such stigmatization at one level or another. Here the mental health arena has no monopoly. My own story is relatively simple and relates to the not uncommon situation of having suffered a serious depression and so having been off work. My surprise came a year later when a medical professional challenged, but not openly, a consideration I had given about a patient. I cannot remember fully the details: just that I was offering a social dimension to the overall appreciation of the case (to complement the narrower medical approach). I later heard that my discussion had been regarded as an example of ‘my illness’ and this was expressed in such a way as to confirm that my view therefore had lesser value.
When I started in psychiatry I received excellent interview training that I have always considered stood me in good stead as a doctor. However one particular aspect of that training now troubles me: that the description of symptoms by the patient (“subjective”) is less valid than the interpretation (“objective”) by the “expert” interviewer. I am in agreement with Dr Allan Beveridge that it is time to abandon the ‘subjective-objective divide’ It was Harry Stack Sullivan who maintained that the most important therapeutic factor was the relationship between doctor and patient, and this led him to decry those clinicians who adopted a detached and supposedly ‘objective’ approach to the patient.
In the last consideration I mentioned a recent College meeting that I attended on the ‘Importance and Implications of Classification’ (Royal College of Psychiatrists in Scotland Autumn Meeting, 2011). At this same meeting some of the speakers, mostly the younger generation, said that they felt ‘caricatured’ or stigmatised as ‘biological-reductionists.’ For this I found I had some sympathy, but that my sympathy was tempered by the appreciation that my voice, on behalf of my sibling, was viewed as merely ‘subjective.’ As one background participant I was keen to mention ‘vulnerabilities’ to illness and to argue why, if we are to consider psychosis seriously, we need to listen to the immediate world around the individual, and not isolate that individual from their world. For me the divide between the ‘objective’ medical profession and the ‘subjective’ patient opened up at this meeting like the chasm that I believe it still is. It is perhaps no wonder then that there is limited user-interface with psychiatry.
I am convinced the diagnostic lens is a stigmatiser in itself. In such a view the doctor (and the wider world) ceases to see the whole person, and can too easily be distracted from what else is going on outside any label. This, in itself, limits understanding. I certainly think that being conscious of the power of diagnosis and of the labelling process might contribute to a wiser use of diagnoses, but agree that removing the ‘diagnosis’ by itself would not eliminate stigma.
Whilst our profession has made great efforts to tackle stigma, a study by Lauber et al found that nearly three quarters of the relevant publications report that beliefs of mental health providers do not differ from those of the population, or are even more negative (Lauber, 2006). This contradicts the hypotheses of most studies that had expected more favourable attitudes due to professionals’ knowledge about mental disorders and their daily contact with those suffering from them. Lauber concluded: ‘Through their training and indeed their excellent mental health literacy, mental health professionals may have sharpened their view on human suffering, looking at it through the diagnostic lens in order to identify familiar criteria in somebody’s ailments that will allow them to bring forward their specific expertise to help the person concerned. Our findings indicate that, while mental health providers are well informed about mental illness, they nevertheless do not always hold positive opinions about the conditions and the people they treat’.
As an example of this unwittingly negative attitude, even amongst the most well- meaning of professionals, I can quote from the British Journal of Psychiatry itself. When referring to antidepressant prescribing, Professor Ian Reid described the ’general public’s distaste for the very idea of psychopharmacology’ as the ’real villain’ (Reid, 2009). I do not know about you, but all I can say is that I did not come into medicine to see patients as villains. Such ill considered language surely reflects the “otherness” of those being described.
Keeping people away (Bricked up)
Concerted effort has been made over the last ten years both nationally and internationally to tackle stigma and some progress has been made in the approach to recovery and the appreciation of narrative in illness (Leamy et al, 2011). Recently Professor Peter Tyrer, the Editor of the British Journal of Psychiatry found himself ‘disturbed’ about ‘the claim that stigma and discrimination against people with mental illness is getting worse’ and concluded that he ‘does not detect this in the UK’ (Tyrer, 2012). However recent research into anti-stigma campaigns have concluded that too many of these initiatives are still largely uninformed by the lived realities of people with mental illness and their families (Shulze, 2011). It is vital that initiatives over stigma do not keep those affected away.
Conclusion: Let there be light
The metaphor that has been employed in this essay is that of a house representing the profession of which I am today part. It is very important to me that this essay is not simply understood as an attack upon that house. However equally I am not retreating from that house.
The British Journal of Psychiatry (BJPsych) is a very influential journal but does not have a comparable user interface to that brought to the British Medical Journal (BMJ) by its former editor Richard Smith. The BMJ includes inputs from scientists, sociologists, journalists, anthropologists, politicians and of course patients. Some have argued that the focus of the BJPsych is predominantly biological. Although I do not fully agree with this, it is important that we do not ignore the risks described by Angermeyer: ‘[that at] this stage, promulgating biogenetic causal models of mental illness cannot be regarded as a rational, evidence-based strategy to decrease individual discrimination against people with mental illness, but rather entails a risk of increasing stigma’(Angermeyer, 2011). I also have no doubt that the voice of the patient is under-represented in such an influential journal.
We should remember that psychiatry suffers from stigma of its own, seen as somehow “other” from increasingly technological fields of medicine and surgery. This seems to have engendered a defensiveness in the profession which results in the pursuit of the biological at the expense of the wider embrace of medical humanities. I believe that some enhanced understanding of what is going on between psychiatrist and patient does not preclude a scientific explanation of what is going on in the patient alone, and such scientific explanation does not need to be a way to cut off a vulnerable person.
In this essay I have urged medical professionals to consider their own attitudes and to become aware of them, to involve service users in the development of services, and to stand up against discrimination (McWilliam, 2011, p1). Some have argued that today’s proliferation of books, papers and conferences on philosophy and phenomenology has been fuelled by the belief that biological psychiatry does not provide all the answers, and that we have to critically examine its assumptions and claims about what it is to be human (Brockman, 1996).
If psychiatry can overcome its fears and truly tackle all the heads of stigma, most particularly by truly listening to its patients, it can only be to the benefit of the profession and patients alike. The window tax was abolished in 1851 we have no reason then to exclude the light.
To play my short film, WINDOW TAX, please click here or on the image above.
References:
Angermeyer, M. C. et al., 2011. Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. The British Journal of Psychiatry 199, pp.367-372
Anon healthcare professional. 2012. “In relation to your videos and your talk in which you mentioned your (sibling), and what has been said to you about this, well quite frankly, that is stigma in its highest form, and disgusting. I can understand why you feel hurt.”
Brockman, J. 1996. The Third Culture. Touchstone
Collins, B., 2012. Everyday moments caught in time. TED Ideas worth spreading, available at http://www.ted.com/talks/billy_collins_everyday_moments_caught_in_time.html
Connolly, C., 1944. The Unquiet Grave. 1944
Goffman. E., 1963: Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall
Goldacre, B., 2009. Bad Science. Fourth Estate, London
Higgs, P. and Rees Jones, I., 2009. Medical Sociology and Old Age: Towards a Sociology of Health in Later Life.
Lauber, C., 2006. Attitudes of Mental Health Professionals toward People with Schizophrenia and Major Depression. Schizophrenia Bulletin, 32(4) pp.709-714.
Leamy, M. et al., 2011. Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. British Journal of Psychiatry; 199: pp.445-52
McWilliam, C., 2010. What to look for in Winter: A memoir in blindness. Jonathan Cape
McWilliam, C., 2010 “The medical term used for my type of blindness is ‘functional’. Back to that word ‘functional’. Perhaps it is my Scottishness, but I can’t see a way of writing this book without wanting it to be of some use.” What to look for in Winter: A memoir in blindness p1
Phelan, J. C. Link, B.G. and J.F., 2008. Stigma and prejudice: One animal or two? Social Science & Medicine, 67, pp.358–367
Reid, I. C., 2009 Review of Before Prozac: The troubled history of mood disorders in psychiatry. British Journal of Psychiatry.
Sartorius, N., 2002. Editorial: Iatrogenic stigma of mental illness, British medical Journal, BMJ2002; 324:1470
Schulze, B., 2007 Stigma and mental health professionals: A review of the evidence on an intricate relationship. Int Rev Psychiatry. Vol. 19, No. 2. pp137-155
Smith, M., 2002. Don’t Scapegoat psychiatry. British medical Journal, Rapid Response, available at http://www.bmj.com/rapid-response/2011/10/29/dont-scapegoat-psychiatry
The Roya lCollege of Psychiatrists in Scotland Autumn Meeting. 2011. Importance and Implications of Classification. Edinburgh
Tyrer, P., 2012 From the Editor’s desk. Br J Psychiatry; 200, p518