The DSM5 Debates: Searching for the voices of those living under, through, and beyond psychiatric diagnoses

Next week, on June 4–5, 2013, I will be speaking at the DSM-5 extravaganza taking place at the Institute of Psychiatry, King’s College London. There is a 2-day international conference titled: DSM-5 and the Future of Psychiatric Diagnosis: Where is the roadmap taking us?, as well as a Maudsley Debate (which will be podcast) on “Enabling or Labelling?” (This House believes that psychiatric diagnosis has advanced the care of people with mental health problems.) Meanwhile, outside the Institute of Psychiatry, protestors from SOAP (Speak Out Against Psychiatry) will be gathering at the time of the DSM5 conference, since they argue that “the DSM-5 makes it easier for normal human experiences to be labeled as mental illness”.

I am one of the conference speakers (my talk is titled: “‘Dissecting diagnosis’ (as a historian and a patient)”), and am also one of the opposers – together with Dr Pat Bracken (co-author of Post-Psychiatry: Mental Health in a Post-Modern World) of the motion in the Maudsley Debate.

In both my conference presentation  and in my opposition to the motion of the debate, I will be attempting critically to analyse whose voices and which arguments have been marginalized or occluded in the fraught and crowded media space that has dominated discussions of the DSM5. There has, indeed, been an extraordinary outpouring of both discourse and affect. Indeed, I have been intrigued for many weeks by trying to determine what the varied ‘objects’ of such discourse and affect are. The thing (if one can call it that) that is the “DSM5” – and which is being critiqued, haggled over, defended and torn apart – comprises, I suggest, a complex assemblage – one whose contours I have been struggling to delineate. (Indeed, part of me at this point wishes I could stop reading and/or listening to anything more about the DSM for a good few months, so fractious have the debates become.)

But I am struggling on. One of my particular preoccupations is with how the voices of those who have been diagnosed through the DSM (or through other systems of psychiatric classification) are often marginalized in these debates. If I look at the programme for the Institute of Psychiatry conference, it appears – though one cannot be sure – that I am the only speaker to be offering the perspective of one who has lived in and through the practices of psychiatric diagnosis (though Prof Ilina Singh will be presenting her work on young people’s experiences of ADHD diagnosis [see The Voices Project]).  I am also intrigued by how the Maudsley Debate has been structured – in which two very prominent and senior male psychiatrists and professors (Prof Anthony David and Prof Norman Sartorius) have been invited to support the motion, while two ‘Drs’ (Pat Bracken and I) have been invited to oppose.

At this point, I am particularly keen to know from people who have received psychiatric diagnoses if there are particular arguments, ideas, and formulations regarding DSM5 and/or psychiatric diagnosis that I should endeavor to include in the paper and/or debate. Which are the points that keep on getting lost in the flurry of articles and interviews and talking heads? Which of them particularly need to be heard in the lecture hall of the Institute of Psychiatry?

I would love to hear from you (and others who are invested in debates over the DSM5)! (Of course, if I use any of your thoughts or ideas in my presentations, I will acknowledge you in a way that you choose).

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46 Responses to The DSM5 Debates: Searching for the voices of those living under, through, and beyond psychiatric diagnoses

  1. Timothy says:

    I wish I could attend your talk.

    As a person with extensive (and ongoing) experience most painfully with ‘psychosis,’ but also psychiatric ‘treatment’ and involvement with mental health activism, I’m disheartened by how discussions of DSM5’s release have played out.
    Granted, I am speaking from a US context, and the UK has long been far ahead in these matters.
    My disappointment has primarily been directed at activists. My sense is that activists have largely occupied a (perhaps structurally determined) position of opposition to DSM. To me, this not only misses the point, but risks potentially undermining the vary goals that activists espouse. Explicitly, rejection of psychiatric diagnoses that quickly slip into denial of the ‘difference’ and profound suffering that the diagnoses were ostensibly created as references for. [I should be clear that my critique here refers to ‘psychotic’ diagnoses, a rather small portion of the DSM. I realize much of the text seems to pathologize more ‘normative’ human experience.] In other words, the activist (and ‘dissident clinician’) critique often sounds like Szasz, a denial of an experience that I (very unfortunately) know is ‘real.’
    How does one both acknowledge this, while also critiquing DSM5, a cultural industry that deserves to be abandoned? What, if anything, should take it’s place? I wish I knew. I’m sure you’ve thought about this already, and I’ve read Pat Bracken’s books and expect he’s thought about it also. I guess I would simply say, the most inspiring thing I could hear at such a conference would be someone who could both reject those particular taxonomies while maintaining the truth of the distinctive forms of selfhood and suffering to which some of them attempt (albeit poorly) to refer.

    • No. says:

      “In other words, the activist (and ‘dissident clinician’) critique often sounds like Szasz, a denial of an experience that I (very unfortunately) know is ‘real.’”

      You obviously haven’t read Szasz then. Or understood him. He said your experiences aren’t medical diseases. He didn’t say they were not real experiences.

      • Timothy says:

        Thanks for your response to my comment, though I must say I am generally much less inclined to reply to comments that include personal evaluations (i.e. judgements of what I have read or understood.)
        I have read a number of books by Szasz. In the comment above I am referring to more implicit features of Szasz’s work, not to a simplistic dichotomy between disease/not disease: specifically, the implications of his combination of libertarian ideology with his reduction of these types of ‘experiences’ to essentially behavioral problems (and thought as a type of behavior.)
        As to what I understand, I might suggest the possibility that we have different readings/interpretations of Szasz.
        Regards.

  2. 'Diagnosee' says:

    I told myself it would rile me up to much to respond and then decided to anyway…. Asking what’s missing in the DSM crossfire, where would one begin…? Rather than reclaiming language–and, for lack of a better word, meaningful ‘meta-concepts’ or patterns of mad experience, the desire seems to be to jettison all psychiatric terms in place of…. what, exactly? A few privileged & romanticized dimensional (?) or ‘survivor’ identities? All madness re-spun as a consequence of trauma, abuse, oppression? All to replace ‘the’ (curiously singular) biomedical model with model(s) that in turn deny the physical body, perpetuate already entrenched dualisms, and impossibilize or abort culturally significant modes of identification? Determinations made, once again, by whom and for whom? Who here, really, has the right to speak, the authority to speak, and who does not? Certainly it’s no given, on either side, that this right, authority, or expertise belongs to ‘the diagnosed.’

    An implicit assumption, one that honestly angers me in no small measure, appears to be that a great many service users are in fact nothing more than vehicles of internalized oppression should they themselves claim these “labels,” these “identities”, quietly but internally recraft “this” language. I’m honestly not sure which over-polarized ‘side’ frustrates and saddens me more.

    I do not see liberation or emancipation here, do not see a ‘paradigm shift’. The wolf seems only to have slipped into the hunter’s cloak.

  3. Felicity Callard says:

    Thank you both, TImothy and ‘Diagnosee’, for your acutely articulated – and equally acutely felt — commentaries on the cramped confines of the DSM ‘debate’. I absolutely agree with the limitations of framing discussions through the axis of the ‘label’ — in which the claiming of a ‘label’ can be so easily read as simple capture by so-called ‘biomedical hegemony’, and in which a rejection of all ‘labels’ too often and too easily slips into an aetiolated, often one-dimensional model of ‘distress’ and/or ‘difference’. In the last couple of decades, we have seen extensive bodies of work — emerging from many disciplines, inter-disciplines and discourses within and, equally importantly, beyond the academy — that have provided rich, complex (if certainly not resolved) models through which to rethink our categories of the so-called natural and cultural, and the biological and the social. There has also been an efflorescence of work that has grappled with how to address normativity and the normative. Often, it seems as though these rich bodies of thought have very little place in the hammer-and-tong Manichean battles that have characterized much of the discourse surrounding the DSM5.

  4. 'Diagnosee' says:

    Even worse than the lack of theoretical nuance is the fact that far too many anti-DSM advocates are not even listening to ‘actual’/diverse service users. Given the hypocrisy involved, if the claim is to be doing things fundamentally differently from “biomedical psychiatrists”, the moral peril seems even higher.

    As an activist myself, it seems essentially unacceptable to dissent. As per usual, the terms debate and dialogue seem to be used only in the most rhetorical sense.

    At the end of the day, there is seemingly no place for those of us for whom ongoing experiences that cluster as psychosis (or any other particular nosologically-derived category) form a core and fundamental part of our identities, of how we negotiate and experience the world.

    Of course, as I’ve written before (in line with Judith Butler) the logic behind censorship is fundamentally flawed; language (/discourse) is simply far too recalcitrant. (From Excitable Speech: “Never fully separable from that which it seeks to censor, censorship is implicated in its own repudiated material in ways that produce paradoxical consequences. If censoring a text is always in some sense incomplete, that may be partly because the text in question takes on new life as part of the very discourse produced by the mechanism of censorship.”) This, I suppose, should reassure me; I am not entirely sure it does.

    • Felicity Callard says:

      “[I]t seems essentially unacceptable to dissent”: I’m really intrigued by this. On what grounds? And with what presumed consequences? Is dissent being interpreted as a traitorous activity (again, yet more evidence of a black-and-white dichotomy of how the good and bad is being conceptualized in relation to the DSM?). What kinds of strategies or tactics might allow a chink to be opened in this discursive field?

  5. Timothy says:

    Yes. Diagnosee is articulating both what I was trying to express, but also my sense of all of this that I just haven’t been able to put into words.

  6. Glaucus says:

    Some of the most compelling evidence against the motion that ‘diagnosis has advanced the care’ is located in the online forums and Facebook groups which have sprung up to provide support to those damaged by the drugs and those trying to withdraw. Have the proposers of the motion visited sites like paxilprogress.org, benzobuddies.org or survivingantidepressants.org? Or talked to the overwhelmed staff of the UK withdrawal support charities, such as Recovery Road, or Bristol and District Tranquiliser Project, or Oldham Tranx? The stories of lives destroyed, careers lost and families devastated are almost too shocking to believe. Sufferers sit in their homes, unable to function with a terrible array of drug-induced neurological symptoms for months or years on end – all because they trusted their doctor or psychiatrist and the diagnosis they were given. And all too often these diagnoses ignored any likely physical causes for their distress – e.g. a reaction to an illness, or other medication, thyroid problem or vitamin deficiency. This is an invisible public health catastrophe, and the tremendous harm caused by psychiatric drugs should cause the profession to hang its head in shame.

    • Felicity Callard says:

      Thank you Glaucus for your post. One central question for this debate will undoubtedly be the kinds of evidence that are mobilized — and the relative weights they are accorded by those appraising them in the audience.

      • Glaucus says:

        There is a real issue here, insofar as much of the ‘evidence’ I refer to is dismissed as anecdote. Indeed in an earlier Maudsley debate on psych drugs (The Drugs Don’t Work) Professor Wolpert – opposing the motion – huffily rejected one contributor’s description of widespread drug harm as ‘anecdotal nonsense’. But at what point do the thousands of ‘anecdotes’ become hard data? In the absence of proper research the thousands of harrowing stories from these websites and charities are the best evidence available. Of course it would be much better if someone would undertake formal research into the scale of psych drug-induced harm – but unsurprisingly no one is lining up to do this.

    • Felicity Callard says:

      As someone who has research interests in the history and sociology of science, I am fascinated by how categories of ‘scientific evidence’ become constituted and solidified (and hence also by what is pushed into — and sometimes remains — within the domain of the ‘anecdotal’). One interesting moment in relation to the use of testimonies in psychiatry was Diana Rose and colleagues’ review of Patients’ Perspectives on ECT (published in: BMJ 2003;326:1363 and in the British Journal of Psychiatry [doi: 10.1192/bjp.186.1.54]) in which they used patient testimonies regarding ECT, grey literature produced by patient/service-user led organizations as well as studies that had been published in high-impact journals. That these studies were published in both the BMJ and BJPsych indicates, perhaps, a potential shift in how ‘evidence’ might be imagined within medicine and psychiatry.

  7. chasing_data says:

    Thanks for your post.

    You ask: “Which are the points that keep on getting lost in the flurry of articles?” I’ve noticed that the voices of pro-diagnosis service users tend to be ignored by the anti-DSM campaigners.

    For example, the recent BPS DCP position statement on classification acknowledges, but then neatly pushes aside, pro-diagnosis service users here:

    “Core issue 2: Impact on service users
    The needs of services users should be central to any system of classification. Service users express a wide range of views on psychiatric diagnosis and the DCP recognises the importance of being respectful of their perspectives. Some service users report that diagnosis is useful in putting a name to their distress and assisting them in the understanding and management of their difficulties, whereas for others the experience is of negativity and harm. Some of the key concerns include… ”

    … and the statement proceeds to list six paragraphs of anti-diagnosis points. (The statement as a whole, of course, calls for a paradigm shift away from diagnosis, regardless of the service users who find diagnosis useful.)

    Given two of the above ‘key concerns’ are “Marginalising knowledge from lived experience” and “Disempowerment”, it’s remarkable that the BPS marginalises the pro-diagnosis service users so completely.

    • Felicity Callard says:

      Chasing_Data: this is a fascinating point. I am intrigued by which positions become (or are helped to become) visible in these debates — and how to explain how and for what (often complex) reasons certain positions (and knowledge claims) are marginalized. I’ve been thinking through how many of the current DSM5 debates revivify and give added energy to earlier moments of intense psychiatric contestation … and trying to understand how so-called ‘pro’ and ‘anti-‘diagnosis positions in 2013 are both similar to and depart from positions advanced in the 1980s, 1990s and 2000s. What does it mean to inhabit a psychiatric diagnosis *now* — and of course this depends on the geographical and social context in which one finds oneself, let alone the particularity of the diagnosis — in comparison with inhabiting a psychiatric diagnosis in 1980? I am also thinking hard about the comments from Timothy and Diagnosee, who both argue that how many of the anti-diagnosis formulations end up leaving little space — as Diagnosee puts it — “for those … for whom ongoing experiences that cluster as psychosis (or any other particular nosologically-derived category) form a core and fundamental part of our identities, of how we negotiate and experience the world”.

      • chasing_data says:

        Thanks for your reply. Re: “What does it mean to inhabit a psychiatric diagnosis *now*”, as someone with a bipolar diagnosis I’ve been very struck that in May 2013, in the space of a week, it’s been possible to read both this:

        “Studies of families and twins show the importance of genetic factors affecting susceptibility to bipolar disorder and suggest substantial genetic and phenotypic complexity. Robust and replicable genome-wide significant associations have recently been reported in genome-wide association studies at several common polymorphisms, including variants within the genes CACNA1C, ODZ4, and NCAN.” (Craddock and Sklar, The Lancet, 10th May)

        and this:

        “No one is denying that people suffer very extreme forms of distress. What we are saying, and in fact what some of the world’s most senior psychiatrists are saying, is that there is no evidence that this kind of breakdown is best understood as an illness, with genetic or biochemical causes.” (Johnstone, quoted in the Mail Online, 13th May, 2013).

        Strange times, when the genetic evidence is either accumulating and detailed, or non-existent, depending on who (and where) you read.

  8. Patricia Bergeron says:

    My experience with psychiatry basically is one where I have diagnoses because my lack of symptoms is construed as a denial of symptoms. My question would be: is there any hope to see this fallacy disappear? Lack of symptoms is lack of symptoms, period. I’m very tired of this nonsense.

  9. 'Diagnosee' says:

    Felicity, yes–traitorous. There’s an Ethan Watters quote I love (not from any written text–from an audio interview I’ve never been able to find again–in which he essentially says (undoubtedly I’ve embellished over time) that “the truly difficult place to occupy is the long grey middle. As long as you’re there you risk attack from both sides that often paradoxically exceeds anything directed between them.”)

    As I’ve said again and again, “we” simply don’t want to acknowledge heterogeneity. That some people are more helped than hurt by meds and vice versa; some more helped than hurt by diagnosis (or ‘the mental health system’ or psychiatry) and vice versa. (And every variation and shade of grey in between.) A necessary opening for further considerations of the profound complexities of identity, sense of self, enduring vs episodic vs distant-past MH experiences, culture, family history, particular disavowed and avowed experiences, entaglements of genes, biology, the environment, culture and individual agency, etc.

    We’re thus left with seemingly endless over-simplifications, over-generalizations, and the near-total occlusion of perspectives that do not fit either body of dogma.

    • Felicity Callard says:

      Agreed re ‘near-total occlusion of perspectives that do not fit either body of dogma’ … and the question remains: What kinds of practices (and practices understood here as potentially including a wide variety of affective strategies) might best allow the “long grey middle” to become a more inhabitable place? Part of the problem is, precisely, that inhabiting that place is so affectively exhausting. And its pleasures and rewards are harder to find than those that can accrue to those holding on to the angry purity of one extreme or the other. (I am thinking now of all the psychoanalytic writing that explores the difficulties and precarity of ambivalence …)

  10. Linda Fielden says:

    Over the course of my life, I have received various diagnoses of depression, dysthymia, and anxiety disorder. As a result, I was offered SRI antidepressants and benzodiazepines. I am now suffering from protracted benzodiazepine withdrawal syndrome. The doctors who made my diagnoses failed to consider my life context (e.g., transracial adoption, physical, emotional, and sexual abuse, ongoing racial/ethnic identity issues) before making a diagnosis and prescribing psychiatric medication. I would have been better served by counseling and cultural guidance. When I was asked about my birth family (I know my mother’s side, having been reunited with her for over 20 years), I mentioned that she and my sisters have suffered from depression and anxiety. However, they too experienced abandonment, neglect, and various forms of abuse during their childhoods. My family is indigenous and I was raised by a family of the colonizing race/ethnicity. So, there are multiple factors that I think are vital in determining a diagnosis, and which are often overlooked: historical trauma/abuse and race/ethnic factors, such as transracial adoption.

  11. Playa says:

    The problem lies in that there is no scientific basis for psychiatric diagnoses and yet there are disastrous results for the patient when Psychiatry gets it all wrong.

    “There’s no biological imbalance.  When people come to me and they say, ‘I have a biological  imbalance,’ I say, ‘Show me your lab tests.’  There are no lab tests.  So what’s the biochemical  imbalance?”  —Dr. Ron Leifer, New York psychiatrist. 

    I was fed these lies for years- and I believed it. What started out as a simple and common complaint for “work-related stress” ultimately led to the introduction of medication and polydrugging- which then led to tolerance, dose increases, toxicity and eventually a horrific, traumatic withdrawal syndrome (that nearly took my life) that I am still coping with to this day, despite being psychiatric drug-free for six months. It took me two years to peel myself off of the drugs with little or no help from the Psychiatric community that is soley responsible for the damage that was inflicted from the years polydrugging. The only thing I got from the psychiatric community when it was all said and done was denial, patient blaming and invalidation. I found my support, validation and tapering guidance online from strangers in facebook groups and online forums who had all found themselves in the same predicament.

    I have been alone, locked away in my house, for nearly 3 years now, attempting to free myself from the grips of psychiatry. I am supine on my back as I type this with ripping, shredding, burning pain in my spine from the benzodiazepine withdrawal syndrome that ravages my existance and makes it difficult for me to ambulate and care for myself. My family is simply fed up with my illness – for years they didn’t even believe that the prescribed psychiatric medication could cause such devastation. More denial and more invalidation which left me feeling hopeless, isolated and self-loathing. As a result of this denial from my family, I was tossed out to suffer alone and without in-person support because of my “bad behavior” (which was really just symptoms resulting from reductions in psyschotropic medication that were beyond my control) . My friendships that I nurtured for years since I was in elementary school are all but over. I haven’t worked since October 2010 and am living on a monthly disability check, which I was lucky to get (most people are denied for disability due to psychiatric drug withdrawal). Prior to taking psychiatric medications, I was a professional with a masters degree making six figures. I am in my mid-thirties and because I have been ill on psych meds since I was in my mid-twenties (and didn’t know that the drugs were my problem all along), I am single and unmarried and may never get to fulfill my dreams of being a mother. I had to sell my house because I was too sick to care for it myself and because I could no longer afford it. The list of “losses” that I can chalk up to the effects that Psychiatry has caused in my life are virtually endless. I want the life back that I was supposed to have, that I worked so hard for, had Psychiatry not entered my life years ago.

    The most important question (that I eventually got an answer to) that I had to answer for myself is “How did I end up in this place and how did I not know it was the drugs all along?”. I trusted a Psychiatrist, that’s how. That was the single biggest mistake of my life. I believed her when she told me that I had a “chemical imbalance” in my brain and I allowed her to drug me and to continue drugging me for 5 years until I was suicidal and so sick that I could no longer function. For self-validation, the most imporant article I read during this process was by Dr. Peter Breggin: “Intoxication Anosognosia:The Spellbinding Effect of Psychiatric Drugs” (Ethical Human Psychology and Psychiatry, Volume 8, Number 3, Fall/Winter 2006)*. It served to answer my questions about how I could be so duped into believing the lies perpetuated by psychiatry, how I didn’t know better or figure it out sooner; and how I could continue taking psychiatric drugs for years without knowing that the drugs were slowly unraveling and destroying my life and my health.

    Lastly and in closing, I am afraid of the psychiatric labels that might stick with me for the rest of my life. I am afraid that people won’t see me for me anymore. Instead of normalcy and success, I fear they will see a misdiagnosis of “mental illness” and I will be written off. I’m afraid that what started out as normal work-related stress will follow me around and haunt me forever. I know that people see me now as a “drug addict” because I developed a withdrawal syndrome and strange behaviors while attempting to stop my prescribed, iatrogenic dependence to benzodiazepines. I’m almost positive that others might even think I am “mentally ill” or go so far as to say that I’m “crazy”. I guess I shouldn’t care because I know the truth- it was the drugs all along. But, it disgusts me that Psychiatry abuses it’s power for nothing more than profit at the expense of the patient and then when it has totally destroyed you, it spits you out, refuses to help you, blames you and then leaves you “labeled” and “damaged” to deal with it’s aftermath. In the end, I’m just incredibly lucky that I got out alive.

    *E-mail me for a copy of this journal article if you are interested in reading it.

  12. madeinpa says:

    I am reluctant to expend my thoughts and words on the subject of psychiatry simply because it is and has been guarded by a legion of individuals who have been given the privilege to help many suffering people but who have abused that privilege. Yet I am compelled to speak for the masses who have not only been harmed by psychiatry but also those who have lost their lives to it. The day is coming when civilized society will see that, in fact, the emperor is wearing no clothes – that psychiatry as it is practiced today is a cruel ruse masquerading as a field of medicine.

    Sixteen years ago, I had some life situations that caused me some emotional problems. Our daughter was in the midst of a teenage rebellion, and one of my projects at work was attacked. Over a few months I started getting panic attacks from the worry and anxiety. I went to the doctor and came away with Xanax, a script for Paxil and a diagnosis of panic disorder. I took the Paxil for three days and would have committed suicide the next day had I taken one more dose. The restlessness was unbearable. I went to a psychiatrist and came away with a diagnosis of panic disorder, generalized anxiety disorder, and major clinical depression. The Paxil and Xanax were replaced with scripts for Zoloft and Klonopin. This began a year and a half of poly-drugging. I took no less than ten different psychotropic medications during that time. Near the end of that time I was contemplating suicide once again. It is only by getting off all those drugs (except the Klonopin to which I was seemingly hopelessly addicted) that my life was spared.

    For thirteen years I took Klonopin. I was told that I would always need it. During those thirteen years I began self-medicating with alcohol because I was in tolerance withdrawal from the Klonopin. When I managed to quit drinking, I fell into severe tolerance withdrawal and once again became suicidal and ended up in a psychiatric hospital. There I was poly-drugged again while I was cold-turkeyed from the Klonopin. I even endured four ECT treatments while there. The suffering was horrendous. I was told that the withdrawal would be over in 48 hours.

    For another six months I was poly-drugged with no less than a dozen more psychotropic agents. It was not until I was completely off all psychotropic drugs that my brain could actually heal from the torture of the drugging. I suffered intense mental misery every minute of every hour of every day for two full years simply because psychiatrists had no idea what to do but give me more drugs – drugs that caused my misery and prolonged it every time I was prescribed more.

    Today I am mentally stronger and happier than any psychiatrist I have ever seen. In fact, I am the most positive person I know. I take no psychotropic drugs. The psychiatrists all told me that I had a chemical imbalance and that, based on my family history, I was genetically predisposed to live a life of anxiety and depression. I was told that I would need to be on medications for the rest of my life. The truth of the matter is that I was mentally and emotionally strong all along, and, what could have been resolved with therapy, was prolonged and intensified with prescription psychotropic drugs that nearly caused me to take my life three times until I finally escaped.

    Sadly, I have known many people who did not escape psychiatric poly-drugging. They are dead by their own hands. I know many people who have been trapped in the poly-drugging web and who cannot escape. Many are neither happy nor sad. They just exist. I have never met anyone on an anti-depressant who was “happy, joyous and free” (and I know many who are on them). The drugs don’t allow joy or freedom. I know many individuals who are suffering tremendously from withdrawal from psychiatric medications and who have discovered that their lives will never feel worth living until they are completely off the medications and until they are through the withdrawal from those drugs.

    I feel too wonderful now to argue with the many psychiatrists who will out-of-hand chalk all of this suffering up to drivel from mentally ill patients. After all, these patients were taking psychiatric medications so they must be ill. If I had I not been through this poly-drugging cycle and survived it, I would think the same arrogant, misinformed thoughts. The fact is, I am flourishing in ways that the drugging of all those years would not allow me to do.

    I know beyond any doubt that I am at least as intellectually competent and as mentally and emotionally strong as any psychiatrist I have ever met. I have met hundreds of others who have suffered through poly-drugging or are currently suffering through it who are more intellectually competent than probably most psychiatrists. At some point, the ones suffering now will also be just as mentally and emotionally strong once they have recovered from the effects of the psychiatric drugs.

    The saddest and most barbaric aspect of this is that never once in all my encounters with psychiatrists did even one offer any explanation of how psychiatric drugs work. I would even offer research that I found in the literature, but it was always refused. Vague mention of the neurotransmitters – serotonin, norepinephrine, and dopamine was as far as the “science” ever went. Yet, without a modicum of factual knowledge, they would prescribe mind altering drugs to me and thousands of others.

    Psychiatry needs to tear down the virtual edifice it has built (the DSM) and replace it with something that has some basis in reality, fact, and science. Lives are being destroyed. Lives are being lost.

  13. Timothy says:

    Interesting isn’t it, that even in this thread I feel as if my commentary is slipping in reference towards a position of defending the DSM5 or psychiatry? This in spite of me being very critical of the DSM5 and psychiatry. I know that people have been harmed by psychiatric ‘treatment.’ I think one of the difficulties we get into is when we don’t work to carefully untangle the narratives of psychiatric harm, from the narratives of the distress that (in some, but not all) brought a person into psychiatric treatment in the first place.
    I think it’s interesting that we increasingly have folks with lived experience of things like ongoing ‘psychosis’ who nevertheless are able to critically engage with the likes of clinical literature, ‘theory,’ political economy, broader concerns around social justice etc. This, it seems to me, extends the range of possible identities, ways of being…though also brings up concerns around privilege-access to academic knowledge, education…
    For me personally, mad is part of who I am. Not because someone labeled me, but because the way I experience the world is profoundly different. It seems identity discussions around gender, disability, neurodiversity, are much more interesting and less ossified than what I’m seeing in the ‘mad movement’ these days in this regard. All this by way of saying, I’m not pro DSM5, but I am apposed to anti-DSM arguments that negate a significant part of who I am.

    • Felicity Callard says:

      Timothy — one of the things that I find the most exciting and heartening is how the current moment does hold open certain possibilities (uneven, of course, and not without many problems; I am not being Pollyanna-ish here) for those with experience of ongoing ‘psychosis’ not only to *engage* with clinical literature, theory, critical neuroscience, anthropology and political economy but actively to challenge some of the dominant discourses and methodological practices within those fields. Thus I would argue that the extension of possible ways of being — which you mention — is accompanied by the (hope of) ontological and epistemological transformation within a number of disciplinary spaces.

      • 'Diagnosee' says:

        Curious to hear more about “certain open possibilities”–I confess that I really don’t see them. I suppose I’m personally *theoretically* positioned to challenge dominant discourses, but in practice I don’t see this actually happening. That is, thinking with Foucault, I’d say that the mere structural or physical possibility of some action or intervention does not necessarily translate into (it) “being heard” or a/effecting discourse or practice. “Minor” or “minoritarian” positions and texts are lost all the time.

        I am, of course, particularly cynical/bitter/sad this morning, having just been given a rating of “unsatisfactory” in the category of “professional development” in my PhD program and realizing, in spite of my supposed accomplishments, how very little power or influence or ability to “challenge” anything I actually have. Attempts to ‘resist’, on multiple fronts, that seemingly only ever backfire.

  14. Dawn Talbot says:

    This is a very interesting discussion. A someone diagnosed with bipolar I take my medication as it makes a positive difference, this is after many years of not taking any. I don’t object to the medication if it can help the individual but the label that comes with it. I find this highly stigmatizing and not really a lot of use. I have a brother for with bipolar too his symptoms do not have anything in common with mine. A lot of my psychosis is based around real traumas. I think that the labels are socially constructed and people are often shoved in boxes they don’t neatly fit in to.

  15. In my opinion, the most important point which gets lost in this debate is that psychiatry (especially the American, orthodox, hyper-medicalized brand of psychiatry) is FUNDAMENTALLY coercive. Even a patient who walks into a psychiatrist’s office on his/her own steam, once “diagnosed”, knows that he/she could be subjected to involuntary hospitalization and treatment, depending largely upon the opinions of the psychiatrist. Most often, “diagnosis” is an after-the-fact justification for “treatment” already chosen to alter or suppress some behavior, of which somebody other than the patient disapproves.

    If psychiatry were a professional service delivered entirely on a contractual basis without any recourse, ever, to police or other state force and without arbitrary power to pardon violent crime, “diagnosis” would be harmless. If we could merely eliminate two cultural institutions, the insanity defense and involuntary “treatment”, psychiatric diagnosis might just fade away — but it would in any event not be harmful.

    • Patricia Bergeron says:

      I’m a former law student, in Quebec. My wish is to rebecome a lawyer, despite having a psychiatric file. I’m actively working on this, and on a defamation lawsuit in relation with the said psychiatric file. I would like to be in contact. I joined your twitter feed. Maybe you could join mine and we discuss sometimes? My twitter is @peebee9

  16. Renait says:

    When I was only 24 years old, I began having visual and emotional flashbacks of my childhood abuse. I went to a therapist for help to work through these memories and she diagnosed me with “Clinical Depression” and referred me to a psychiatrist who told me my brain had a “Chemical Imbalance” and he gave me Prozac. I trusted and believed them because they were the “Professionals.” I was too young and ignorant to ask the right questions and was unable to discern anything.

    This was the beginning of being psych-drugged for the next 20 years, including anti-depressants and benzodiazepines. Eventually the damage from these drugs destroyed my life. They stole my marriage, my motherhood, my career, family members, friends, my identity, self-esteem and dignity. I am 47 years old now and I will be grieving these losses for the rest of my life.
    Simply put, all versions of the current DSM-5 are a hoax. While the physical and emotional symptoms of “mental illness” may be real, I don’t believe they are illnesses at all. Especially since there are no lab tests for so called, “chemical imbalances.” The DSM turns normal human experience into “Disorders.” There are many legitimate causes for normal emotions such as sadness, grief, fear, anxiety, anger, and pain that have many legitimate causes such as past trauma of all kinds, nutritional deficiencies, reactions from prescribed medicines, vaccines, toxic food, mold, brain injuries from car accidents, work stress, etc.

    What’s important to realize is the true purpose of the DSM, which is to drug the entire human population for profit while exploiting our emotions and our vulnerability as human beings. Most of us grow up in environments where we learn it’s not safe to feel or express our feelings. When we feel anything we sometimes think, “There must be something wrong with me.” And when we get labeled according to the DSM, this belief gets reinforced. Then we get drugged, ultimately making us numb to ourselves and to our environment.

    I’ll never forget the time I finally asked my psychiatrist, “So are there any actual tests to determine that I have a chemical imbalance?” He quickly answered while writing out my prescription, “Oh, since you had a rough childhood, you definitely have a chemical imbalance.” Where is the sanity in this?

  17. Patricia Bergeron says:

    Totally in agreement with S. Randolph Kretchmar! The harm comes from the power of the law combined with psychiatry. I’m actively working on that one aspect, having studied law myself. I’m engaged in two lawsuits at the moment, and will continue to be active in the field of law and psychiatry.

  18. 'Diagnosee' says:

    I doubt that anyone who has ever experienced psychiatric inpatient “care” would have any trouble criticizing mainstream treatment practices and approaches. At the same time, it is absolutely critical to remind oneself of the complexities of psychiatric and ‘mad’ trajectories. As often as I hear stories of individuals who have been harmed by massive numbers of drugs prescribed for an initially minor complaint, I hear stories of people who refused all medications for decades, “relapsing and relapsing”, unable to work. “Finally I decided to just take them,” I’m usually told, “and since then I’ve gotten my life together, never again been back to the hospital.”

    I designed a battery of autonomy support measures around decisions to take or not take medications (for family, peers, psychosocial clinicians and psychiatrists). I can assure you that my prediction was that peers would rise to the top. Instead? Psychiatrists (by a wide margin). Perplexed, I began to ask participants follow-ups. Their answers simply confirmed their initial responses and I have now heard story after story of psychiatrists who “stuck with [service users] through thick and thin” whereas their case workers and therapists would come and go. Stories of how much more, not less, supportive their psychiatrists have been of medication decisions than their family or often even peers.

    This was not MY experience. But one simply cannot generalize from one’s own experience. Listening to the heterogeneity and diversity of others’ perspectives is extremely difficult but absolutely necessary. Diagnosis is no different. I have again and again and again heard service users talk about how important, fundamental, crucial a “good diagnosis” was for them, how it validated their experiences, allowed them to find other people like them.

    Are we willing to listen to such individuals? Or dismiss their perspectives out of hand as the products of internalized oppression or ignorance….?

  19. tommysmom42 says:

    On September 8, 2011, my 42 year old son put his gun to his head and pulled the trigger. GONE!!

    While some of you are trying to intellectualize psychiatry, the DSM manual and the pharmaceutical drugs that get handed out like candy, I will explain in terms everyone can understand what happen in our family.

    My son was happily married. He has two beautiful children he adored. He had a great job as an Investigator for the New York State Police. A extended family he loved and many friends.

    He went to see a psychiatrist with ordinary living issues, and was diagnosed with anxiety. Then promptly put on Zoloft and Wellbutrin. All of this taking right out of the DSM manual which is also used for billing purposes. This was the start of which would eventually murder my son.

    His wife told me in the nine years or so, that he tried weaning off these drugs only to put himself back on because of the withdrawal symptoms. During this time my son gained a substantial amount of weight and developed diabetes, a pretty common side effect to the use of SSRI drugs.

    The day of his murder, I mean suicide. He had just restarted his drugs. It had been less than two weeks. He woke up rested and happy according to his wife. He made a couple of phone calls that morning. One to met a friend the next day for lunch and another to set up a meeting with the DA for the following week. His wife went out and Tommy stayed home with his children.

    At some point that morning his son asked him if he would go to his friends house and bring him over to play with, and his dad said yes and went and got him. Later his daughter asked him for the same favor to pick up her friend to play with. Again daddy said yes. But, Tommy didn’t make it to that house. Instead he drove himself down town and into a big parking lot. He retrieved his gun from his locked trunk and after getting back into his car, he put the gun to his head and pulled the trigger! This all happened because of the DSM and it’s grouping of symptoms and coming up with the mental lable of anxiety. Here’s a good question to ask the panel of professionals at the get- together. When did anxiety become a death sentence???

    According to the brand new and shiny DSM manual we all have a two week grieving period. Ha! What a joke! I am a grieving mother. My first born child is DEAD because of psychiatry’s DSM!! And I now have a mental disorder, grieving past the a lotted time frame. I am angry as HELL over this profession that doesn’t even have any scientific testing to prove any chemical imbalances. Just a group of words with no understanding of the individual’s life experiences.

    You see I wouldn’t be grieving today, if my son had not been told he had a chemical imbalance in his brain. He would be Alive today doing all the things he loved to do. His wife wouldn’t be widowed, his children wouldn’t be fatherless, his sister’s would still have their big brother and I would still have my only son. I will never stop grieving the loss of my son and in the senseless way he died, because of these psychiatric drugs and their black box warnings are like a small novel. But, we trusting people believe the professionals! The truth is coming out like someone said, the activist the criers of lier’s , the fraud and deception. One person at a time telling the truth and the truth will set us free.

    Let me see the DSM writer’s lose their precious child to SSRI drugs with all the DSM information on mental illness stop grieving after two weeks, two months, two years, twenty-two years.

    My son never had a chemical imbalance in his brain, until he started poisoning it with chemicals that don’t belong there in the unnatural way they are getting put in. Those unnatural chemicals short circuited his brain and he KILLED himself that early Thursday afternoon, on September 8. 2011, to get out of the HELL is brain was in!

    Don’t think my son’s death is an isolating case, because there are thousands like this. Homicides, suicides driven by chemicals not meant to be put into our delicate brains, in there unnatural form. As far as I am concerned and the educated classroom I found myself in, I have come to the only viable conclusion, that is, “GREED.” Our loved ones left suffering with ungodly withdrawals and permanent bodily damage or death. We are just collateral damage in an industry that panders to money and not human lives!

    I pray someday professionals will get it right. Throw out the DSM manuals and listen with empathic ears and have the where with all to help people in thought provoking ways without the crutch of big pharma’s dangerous, debilitating drugs!

    This is for you Tommy, I love and miss you more each day!

    • Felicity Callard says:

      I cannot possibly imagine the grief you have experienced and continue to experience. It is so very sad to read about Tommy’s death.

  20. Timothy says:

    Yes. Another difficulty ‘we’ get into is assuming psychiatry-or even psy disciplines-are hegemonic and singular, and exercise power in a restrictive oppressive way, in support of state, dominant cultural norms etc. This is one way of looking at it. To me, a much more fruitful analysis draws from Foucault, power/knowledge as productive etc.-but also inflected with those readings of Foucault that seek to recover possibilites of resistance/subjectivity/even sort of ‘a priori’ differences between individuals; Butler, Hooks, etc.
    Resistance in these frameworks is diffuse, emergent, momentary, particular. In terms of diagnosis we might think of how power/knowledge pours over-intrisically different?-individuals, who then interact, are produced, reappropriate, resist, in part of a function of this resistent. Much more hopeful reading I would think.
    Also, lest we forget all the ways the DSM is used in actual practice that sort of take us outside what we have been discussing. Both in support of dominant power, but also in resistance to them. Still following Foucault but thinking from William Gibson now and pop culture “The street will find it’s own use for things.”

  21. Timothy says:

    Tommysmom: I wrote my above response before your post. I just want to say I am truly sorry for your loss of your son. I too have lost close ones to suicide, so painful. Any ‘intellectualizing’ on my part is deeply grounded in lived experience, and with commitment to social justice. I just believe these ‘intellectual’ ‘tools’ are a useful way-not the only useful ones-to do this work.
    best-t

  22. 'Diagnosee' says:

    To further emphasize issues of class which Timothy has already raised: who has internet access? Who *can* post in a forum like this? Who would ever be aware that such a debate is going on? Most service users I know in my own region cannot even explain, when asked, what “c/s/x” stands for. “I’m not part of no political movement,” is a response I commonly get. There are immediate, concrete needs and concerns, primarily involving housing and food, or cuts to the public health system (protest signs I’ve seen locally frequently read “Keep the clinics open”; “I have a right to keep seeing my psychiatrist”), concerns that have little to do with the clinical exploration of their experiences, with academic debates, with research, with changes in the DSM. I often ask (have to as part of clinical interviews) what diagnoses people have been given. “Half a dozen”, I’ll hear, and then “so what.” Debates over reliability and validity mean nothing; these are merely bureaucratic gatekeeper determinations that (along with documented functional disability) allow people to access benefits and services. Many of them have not graduated from high school. If the discussion is about numbers–numbers of the people, at least in the US, who are actually ‘served’ by the public mental health ‘system’–it’s pretty safe to conclude that none (or very few) of us on this forum can in any way claim to represent/’be’ them.

    I’m in no way trying to defend the United States’ unconscionable welfare policies, health care system, structural oppression of ethnic minorities, etc. My point is instead: who is listening to *them*? I’m sorely tempted to simply recite Spivak’s controversial (rhetorical) question “can the subaltern speak [here, now]?” with a resounding answer of “no.” (Is there a veritable legion ready to speak FOR them? No doubts there.)

  23. Toni Rhodes says:

    I agree with everything Playa says. I see the pattern all too frequently in online forums — people have some kind of emotional or social problem that they have difficulty dealing with; they go to a psychiatrist who puts a label, such as GAD or Bipolar, on them; they get prescribed a psychiatric drug, which may or may not work. In some cases, like mine, the drug (an SSRI) causes horrific side effects. Instead of realizing that the drug is causing most of the problems, the psychiatrist gives the patient another drug, which may work for awhile, but often leads to addiction. Then, the psychiatrist throws more meds at the patient, hoping something will stick. Sort of like throwing darts at a dartboard. If the patient decides she wants to get off the drugs, there is no support from the psychiatrist. Often, doctors are OK with the patient going cold turkey off the drugs, which leads to horrible (and I mean hellish beyond all imagination) withdrawals. In my case I did cold turkey 3 times, which has led to a protracted withdrawal syndrome and damaged nerves. I don’t know what the answer is, except that psychiatrists and other doctors have got to pay more attention to their patients, and they’ve got to realize that some patients can’t metabolize these drugs. I’ve come to believe that psychiatric drugs should be a last resort.

  24. Felicity Callard says:

    Diagnosee: I was struck, when doing qualitative research studies in London with participants who had — for the most part — received psychotic diagnoses, how remote and opaque the very notion of ‘research’ was for many. This is of course not remotely surprising. For many (and we explicitly explored this in one study), research was primarily a way of being able to supplement meagre incapacity or unemployment benefits — and many people operated with a rough calculus of which studies were the ‘best’ to do (in terms of optimising reimbursement payments and minimizing efforts required). When we collected demographic data, we would ask people for their diagnosis and, as with the situations you describe, many would list a whole slew, some would not know what their (current) diagnosis was, and some would find the question wholly unimportant (Some, in contrast, would vigorously fill out the boxes that we had on the demographics sheets, “Do you agree with your diagnosis?” If “No”, please clarify.”) None of my points is intended to counter your implied answer to your (rhetorical?) question: “Who is listening to *them*?”

    • butterflywgs says:

      Hi Felicity. I am so glad to hear of this – and yes, how appalling it is that you are the only service user who has been asked to speak. After all, nothing much can be expected of us service users, right? We are certainly not informed, educated, or intelligent (/snark).
      My position is mostly ‘I don’t know, shades of grey’ – i.e. I am neither extreme of pro- or anti-diagnosis. And: service users are not a monolith. We have diverse views, as does any group of people. That is OK. I can see why some service users find it validating and useful to have a label that gives a name to their suffering and allows them to not feel they are just weak and flawed as a person – but I don’t feel that way. Because my suffering is real, and I do not need a label as ‘ill’ to validate that. I do not need a brain scan to tell me I am really suffering and have a right to say so. ‘All in the mind’ should not be a pejorative statement. Mental suffering is not less real if you can’t point to a specific finding on a brain scan or levels of a neurotransmitter being abnormal.
      There are different aspects of the same problem – the neurological, the social, the psychological – seeing all these perspectives as equally valid, complementing each other, not negating each other, would be helpful.
      In practice, I am oopposed to the extreme over-reliance on diagnosis in services. In reality the ‘biopsychosocial’ model has become ‘bio-bio-bio’ and services are interested only in diagnosis of ‘symptoms’ and then in shoehorning us down the designated ‘care pathway’ – not in service users as *people* with histories and contexts. I once warned my worker I would become ill if I was forced to move home…no-one listened…I had a relationship breakdown too and lo and behold, I did become ill. I was then blamed for it. Seems if you admit that or give the impression that your mental health reacts at all to your circumstances, you are labelled with a personality disorder, and *everything* is then seen as your own fault for lacking ‘coping strategies’. If you don’t and there is no ‘reason’ you are seen as legitimately ill and nothing that happens could possibly be to do with circumstances. You are seen as either legitimately sick and nothing is your responsibility, or just a bad person and must take responsibility for everything. They offer only therapy and no medication if you have certain diagnoses; only meds and no therapy if you have others. And my diagnosis has changed many times, with accompanying changes in treatment. I am still me, aren’t I? I will still respond (or not) to the same treatments.
      People are not ‘chemical imbalances’ in isolation. I wish services would realise that.

  25. Bobby Baker says:

    Thanks for the invitation to contribute. Having received approx 8 diagnoses during my 11 year stint in the NHS mental health system it is refreshing, and rare, to be asked my opinion on the diagnostic system on a public forum. Our voices, our insights and expertise, our resilience, and/or our ability to recover and stay well have long been drowned out by ‘experts by profession’, ‘experts by media profile’, ‘experts by legal precedence’, ‘experts by social norm’, pundits of the world united etc. I am fortunate, but not alone, in having long ago recovered from a lengthy period of mental ill health. I want to share what I’ve learnt through my work as an artist. The fact is that public ignorance, fear and the stigma associated with psychiatric labelling means that labels such as ‘personality disorder’ stay firmly attached to the people who publicly own up to having received them. Terms such as these are deeply flawed – inappropriate when they where coined in the 70s – semantically inaccurate – and obsolete now. To label people as having a ‘disordered personality’, as a ‘schizophrenic’, as a ‘depressive’ fixes one in time. Like you can never be anything other than that, never move on from periods of distress and ill health, never get better, never be anything other than a disorder. Never, indeed, gain wisdom and insight about life and humanity that society could learn, and benefit, from? The psychiatric profession deal with people when they are ill and in crisis. Their labels, used as access points for services and treatments, may work well for them in the short term but who takes responsibility for the damage done to lives, families and individuals who have received these stigmatised labels? Six years ago I had cancer. The psychiatric and medical professions failed to pick up on this for ages due to the well researched phenomenon of ‘diagnostic overshadowing’. Such is the stigma carried by psychiatric labels that mental health professionals themselves can lose sight of the needs of the people involved. Luckily I have been free from the cancer for six years. Statistically I have ‘recovered’. But can people like me ever ‘recover’ from the damage done by DSM 1/2/3/4/5, and beyond?

  26. Tani says:

    I have been a chronic fatigue unit service user in the past. Thank you for raising the issue of ‘diagnostic overshadowing.’ I feel that DSM categories can legitimise the conditions for these stigmatising practices to arise. For example, ‘Factitious Disorder’ (a subset of Somatoform Disorder? Unfortunately I’m no expert on DSM!) is defined as: “….the -deliberate- simulation of illness for the purpose of seeking the sick role.” (Kanaan & Wessely, 2010) Firstly, I would like to say that I find it fascinating that medical professionals have the psychic ability to -mind read- the intentions of their patients…. And secondly, if this ability to ‘mind read’ about the ‘worried well’ is enshrined in the psychiatric bible, is it really surprising that diagnosic overshadowing occurs in the psychiatric culture?

  27. My questions and comments are quite basic (especially so in this rarefied academic atmosphere). I’ve learned much reading many of the comments here. My special thanks to Timothy for his encouragement to post here.
    1. We are now being told that the DSM has always been but a rough diagnostic guide, never the psychiatrist’s bible (though two books by Allen Frances include the phrase in their titles); that the creators, researchers, and practitioners using it have known this all along.
    If this was so, why—in God’s name why—did they not tell us, the labeled? And why did they snigger among themselves yet venerate it publicly as the benchmark of mental health?
    2. How can we make visible and value those living fully with mind suffering (including, in my experience, psychosis) outside of the DSM’s diagnostic categories and framework? How do we expand the acceptance of different public “performances” of mental health—including “scientific performance” and valuation?
    Right now, the one public and valued performance of mental health (by those with a diagnostic tag), is compliance with a prescriber’s direction, a surrender of self-agency, and a denial of the possibility that the experience(s) of mental “illness” can have or provide value. Choose otherwise, and you remain invisible, no matter how rich and healthy your interior or exterior life. (Often, in fact, you are seen as more likely and liable to be “out of control” and therefore dangerous to yourself or others.)
    3. What role, if any, does self-hatred and fear have in the “othering” of those labeled mentally ill, and what does that mean for those practicing psychiatry who have experiences of psychiatric distress?

    • 1. Clearly, the reason they never told the labeled but continued to venerate DSM, is that it might have cost them money and power to do otherwise.
      2. “Compliance” has been changed to “adherence” to disguise the coercion.
      3. It’s simple. Psychiatrists are generally bad and dangerous people.

  28. Nev says:

    Another couple of issues I’d raise:
    (1) As problematic as I think the phrase “the worried well” is, the fact is (& I hear this from clinicians of all stripes all the time) that a growing number of individuals engage in self-diagnosis long before talking to a “professional provider”, actively seek psychotropic prescriptions (I’ve heard from desperate psychiatrists uncertain as to how to handle seemingly relentless demands from patients unwilling to consider psychosocial alternatives & seemingly without problems severe enough to warrant the drugs they are requesting). This is not to say the opposite doesn’t happen–clearly and unambiguously it does–but rather to suggest that many of the “problems’ of diagnosis and over-medication are driven by multiple forces, not just psychiatry or the pharmaceutical industry.

    (2) Again, as I much as I hate to imply that there are hierarchies of suffering or distress, there are, in my mind, substantial–sometimes chasmic–differences in the severity and biological/psychosocial/environmental etiologies of the problems that different individuals face. The problems of diagnosis, medicalization and (over)medication are, by extension, not the same across different groups and trajectories. Course is also a huge consideration–initial episodes that relatively quickly and permanently resolve (whether or not medications are used), and chronic or enduring problems. Issues that cause substantial disability vs. those that don’t. I think it’s more than fair to say that the individuals with the least “representation” are those with the most severe and enduring problems. (And it comes as no surprise that activists have not even bothered to create emancipatory or empowering alternative terms for the problems many service users on long-term disability face–thought disorder, serious cognitive difficulties, anhedonia. Nor a surprise that the reality of these problems–a stunning form of discrimination, IMHO–are simply denied or explained away as iatrogenic, even when present in individuals who have avoided the system (sometimes choosing the streets instead) or refused all medications since onset. )

    (3) We need to remember that the DSM includes not only classic “psychiatric disorders”, but neurodevelopmental and learning disabilities. For a very different perspective on DSM diagnostic changes, see (leading US Autistic leader) Ari Ne’eman’s recent discussion in SFARI (http://sfari.org/news-and-opinion/specials/2013/dsm-5-special-report/will-new-dsm-5-autism-criteria-impact-services). One fascinating contrast (between Ari’s piece and most of the critiques circulating within the US c/s/x movement) is the emphasis on access to services. I rarely even see this issue mentioned here. How, e.g., in the US health system (which isn’t changing anytime soon), do certain diagnoses allow those individuals who need them most to access services under the constraints of serious resource and funding limitations? How, given such considerations, might we weigh the effects of “misdiagnosis” on a privileged college student told she has bipolar II or depression (when she’s in fact expectably stressed out by school) vs. a young adult from a severely disadvantaged background who has had a serious psychotic break, has little or no family support or access to health insurance, and is in need of immediate, intensive and sustained intervention and support, including purely psychosocial psychiatric rehabilitation (supported employment, supported housing and so on).

  29. I wonder, too, why there has been so little written on *why* the fifth edition of the DSM has received such interest and focus, particularly its shortcomings. To (poorly) paraphrase a Passover prayer: “Why is this DSM different from any other DSM?”
    The primary Frances criticism of this volume–that the methods used to create it were not “scientific” and threw too large a net over the “normals” was levied by Dr. Caplan (and many, many others) against the DSM-IV. Yet those criticisms were not elevated by others in the filed or mainstream media then, or now. Why–was/is it a gender-related issue? Was it because men ascribe more authority, respectability and correctness to facts uttered by other (white) men, and therefore (to them) Frances is a more respected and credible messenger? Is it because we are more easily swayed by the new and don’t take time or have an interest in learning about or from the past?

  30. Felicity Callard says:

    Thank you all so much for your contributions — which have given me so much to think about as I head in to the DSM–5 conference (it starts this morning). I’ll respond more to the substance of many of your arguments as soon as I can. I want to note, too, that I missed one of the lines on the programme as I was scanning it: the autism activist Larry Arnold, is due to speak in a joint section with Virginia Bovell (I want to correct the impression that my original post gave that I was inferring that I would be the only person whose talk explicitly draws on the experience of being diagnosed). And yes, it is critically important (in response to the post from Nev) to remember the full scope of ‘psychiatric taxonomies’ (in relation to neurodevelopmental & neurodegenerative conditions, as well as in relation to those with intellectual disabilities).

  31. Pingback: Diagnosis and disputation: “archiving” DSM–5 | Centre for Medical Humanities Blog

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