ISPS Australia’s Response to Schizophrenia Awareness Week: Drop the Label!

Matt Ball
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“Awareness” of “Schizophrenia” is not the priority for ISPS Australia, the Australian branch of The International Society for Psychological and Social Approaches to Psychosis.

This week, ISPS Australia released a response to Australia’s Schizophrenia Awareness Week campaign: Schizophrenia Awareness Week – Drop the Label! (see full response here or at the ISPS Australia Facebook page). The collaborative effort was liberating for a group of clinicians/professionals and those with lived experience all working toward understanding and finding the meaning of a person’s reality through psychological and social approaches to working with ‘psychosis.’

ISPS Board member says Amanda Waegeli invites us to reflect on her own experience of the label of schizophrenia:

“Receiving a diagnosis of schizophrenia took my last bit of hope for my own recovery away from me. The people left in my life lost their ability to know how to best support me and the treatment options offered to me were reduced to only one option; high levels of sedative medication for the supposed safety of me and those around me. No one believed me anymore, no one listened to me anymore, no one cared anymore. When I managed to drop my own label, I found a strength within and was able to get good support from those who see me as a person. I found psychological and social approaches that helped me and supported my healing journey.”

As Schizophrenia Awareness Week (SAW) draws to a close in Australia, in the midst of an equally awkward Mental Health Month, I have been reflecting on the messages that are currently provided about schizophrenia in Australia.

In Australia, we currently prescribe antipsychotic drugs at a rate of around 30,000 per 100,000 people. We continue to develop ‘models of care’ in health systems that prioritize diagnosis and medication. The dominant discourse of clinician-assessed ‘risk’ for psychosis remains central. Based in decades-old theory, the labelling so often places the person with lived experience, the person who actually has the experience, as a person ‘needing treating’ and not a guide towards new understandings of human experience — not seeing the canary in the coal mine as someone who can identify the best chance to survive, but as a sacrificial entity when people decide to dig holes in an inherently unsafe human endeavour.

The response from ISPS notes that we “Support the aims of raising awareness about psychosis and dispelling myths associated with these experiences. However, we argue that the term schizophrenia is unscientific and stigmatising — it does more to harm than help to people who may experience these extreme states.”

The discourse of “schizophrenia awareness” campaigns positions medical ‘leadership’ in this pursuit of ‘fixing mental illness.’ Leadership here refers to experts-by-university-degree, rather than experts-by-lived-experience. This often blind acceptance of culturally accepted ‘knowledge’ by those who hold the power that comes with degrees, titles, and resources is at the heart of the stigma and discrimination that comes with the label of ‘schizophrenia.’

The “Drop the Label” response from ISPS identifies four elements that are specifically problematic in the language and label of schizophrenia:

  • It denies the impact of trauma
  • Hearing voices is a common human experience
  • The label of ‘schizophrenia’ is incredibly stigmatizing
  • The construct of ‘schizophrenia’ lacks a scientific basis

“Schizophrenia awareness week” (SAW) is a week run broadly by the old ‘schizophrenia’ and other mental ‘illness’ groups that came together many years ago to support people who were suffering from symptoms associated with psychosis. SAW began 26 years ago and this year continues to be supported through the Mental Illness Fellowship of Australia.

Throughout the week my reflections have been on the dichotomy of the doubtlessly well-intentioned but nonetheless stigmatising information that comes out of SAW. The list of questions on the fellowship website invites us to understand that ‘schizophrenia’ is linked to over ‘100 genetic tags’, comments briefly on environmental influences, and then returns to the 50 studies that have shown the genetic factors that supposedly contribute to the ‘illness’. This is all wrapped up in the invitation to “Do What You Can” if you know someone that is “in the dark about mental health.”

Perhaps well-intentioned rhetoric, but the language is filled with oppressive connotations. Including the word ‘illness’ frames the experience in negative terms and describing the stigma as ‘dark’ may have racial undertones and create less cultural safety for first nation people in Australia. Referring to the ‘dark histories’ of Australia brings to mind the violent history that first nation Australians have endured from invaders in over 200 years. The problems with using  ‘dark’ language were skilfully pointed out by Dan Sultan on an Australian Q&A television broadcast concerning the Arrernte and Gurindji people in 2017. Indeed, Aboriginal Australians continue to be diagnosed with ‘schizophrenia’ at high rates, bringing with it the perils of the label.

I have considered the impact of the label of ‘schizophrenia and psychosis’ in my own medical records and in the lives of people I have the privilege to work with — people who are skilfully making sense of their own realities and journeys but suffer the stigma of the label.  The term ‘schizophrenia’ is applied to their legitimate and very human response to their experiences. I remember the simple but not insignificant barriers that the label of ‘schizophrenia and psychosis’ has presented in my life many years after I left the mental health system. Going to University (six years after I left the mental health system) meant that I had to go through health ‘assessments’ that none of my student colleagues went through. When migrating to Australia, I had to ‘massage’ aspects of my medical records which left me feeling a sense of vulnerability, shame and dishonesty. Of course, there are the classic workplace questions, like “could this be about your past illness,” whenever I, the (former) ‘lunatic’ himself, seek to speak to the injustice of a modern mental health system as a mental health nurse practitioner.

On reflection, I am reminded that we might seek to identify the value of the canary in the coal mine and move away from labelling the canary as some sort of problem, instead seeing the canary as a beacon of light to help us move away from the danger of our folly in labelling human experience as ‘schizophrenia’.

Despite alternative spaces and ideas being present in some areas, the broad discourse of biological psychiatry ensures that the ‘schizophrenia’ label carries the full weight of stigma, marginalisation and ‘othering’ for many people who receive it. A label can only ever tell a partial truth, and on the journey of psychosis, the ‘schizophrenia’ label is stuck to a person. The label never did belong to the person who received it — it is a label that belongs to the person who bestowed it.

It really is time to drop the label of schizophrenia, and ISPS Australia invites us to consider doing so in favour of understanding human experience and removing the impediments to a person making sense of their experience. It also encourages us to reflect on how these impediments may themselves be a product of the primarily biomedical perspectives that continue to dominate the mental health systems. Schizophrenia Awareness Week supports such dominant attitudes and highlights the responsibility of organisations such as ISPS Australia to continue to push for everyone to Drop the Label!

72 COMMENTS

      • “Schizophrenia”, what purports to be the scientific name of a disease, as Szasz put it, the sacred symbol of psychiatry, that’s the biggie. If we ever manage to displace the faith people have placed in that label, we will have made a significant advance. Next comes all the rest of the bogus diseases in the DSM, given cause with the MHM, and fueling the entire artificial invalid industry.

        • Absolutely agree with this article in getting rid of the label “schizophrenia” which I see as outdated, not accurate, overly and misused diagnosed, and certainly not helpful to those labeled with this. It never does address the root causes. The diagnosis conjures up life long, disabling condition that one never recovers from which is just not true.

          I agree with Frank Blankenship that once this diagnosis is removed out of the psychiatric lexicon then the rest will fall as well. There might be hope to remove the DSM-V once and for all and no future versions.

        • Given the reality that the “schizophrenia” treatments, the antipsychotics/neuroleptics, can create both the negative and positive symptoms of “schizophrenia.” The negative symptoms can be created via neuroleptic induced deficit syndrome and the positive symptoms (including “psychosis”) can be created via antipsychotic induced anticholinergic toxidrome.

          https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_syndrome
          https://en.wikipedia.org/wiki/Toxidrome

          It should be confessed that “the sacred symbol of psychiatry,” “schizophrenia,” is an illness that can be created with the treatments. And when the treatments can create the symptoms of a “disease,” this means the primary etiology of “schizophrenia” is likely iatrogenic, not “genetic,” in nature.

          That theoretically should be enough information to “displace the faith people have placed in that label.”

  1. Bravo! This article is like a beacon or a proud flag flown on the battlefield of ideas, even as the opposition lines up on the horizon, outnumbering us as usual, with their usual mercenaries: bought and paid for media ‘journalists’ and other propaganda specialists, discombobulated family members, sold out scientists, brain dead faculty members, and saavy pill pushers. This time, we are wise to the tactics of the opposition, like the way it co-opted the rhetoric of the recovery movement, begrudgingly throwing a bone to the existence of trauma and childhood abuse, while failing to acknowledge the huge elephant in the room, the stigma of having a permanent label, the trauma of being diagnosed and cared for by uncaring, cynical, time-pressed, uncommitted, overpaid, and burn-out professionals, the trauma of having the ‘treatment’ ruins one’s lives, and having no one believe in that fact, the trauma of having one’s person hood, privacy, dignity, and civil rights taken away, all of which constitutes harm and abuse.

  2. I went through an anti-noun phase too. It felt good while it lasted. Then people started suggesting new nouns…

    Not everyone diagnosed with schizophrenia hears voices as the article implies.

    Can we please have a campaign to remove the tired “journey” metaphor from all public discourse?

    Psychosis has taught me that absurdism manifests outside of the dreamscape. There is no final meaning, although, granted, it is possible to impose a meaning and steadfastly stick with it, if you so choose. It will certainly open doors and get you noticed.

    Is the term “hearing voices” devoid of stigmatisation?

    – I heard you had schizophrenia?
    – No, no. I have psychosis. I hear voices.
    – What is psychosis?
    – Psychosis is an abnormal condition of the mind that results in difficulties telling what is real and what is not.
    – Like schizophrenia?
    – Well, yes… but, er… less stigmatising.
    – Is it?
    – Well… yes it is. Because psychosis hearing voices is not schizophrenia.
    – But it used to be.
    – Well… yes it used to be. But not any more.
    – So… in the news the other day… that man that beheaded the old lady. They said he heard voices. They said he had schizophrenia. But you’d say he didn’t have schizophrenia, he had hearing voices psychosis? And that is good because it is less stigmatising?
    – Well.. er…

    What I am getting at there is that it isn’t the noun that’s the problem. It’s what gets associated with it. That is what causes the stigma. And unfortunately, every non-violent person is made to carry the cross for every violent person that shares the same designating noun.

    So whether it’s an axe-wielding maniac labelled with schizophrenia, or hearing voices psychosis, or (recently suggested by the UK branch of ISPS) psychosis zx spectrum disorder, the outcome is the same, and until some radical newthink, will go on to be.

    • In the UK I have noticed in a very general sort of way (just reading newspapers, etc.) the term schizophrenia being used less and psychosis more. But as rasselas.redux says with an important exception – horrible crimes. Then it is “a paranoid schizophrenic”.

      • I’ve noticed that too. And here is something interesting from David Healy…

        “Since about 2005 in North West Wales new cases of schizophrenia have been drying up. We have had almost no new cases for a decade. What we have lots of instead are drug induced psychoses, severe personality problems and some strange motor disorders we’ve never seen before – but not classic schizophrenia.”

        https://davidhealy.org/recovery-from-psychosis/

      • The only possible solution I can think of is to have a label specifically for people that kill during psychosis. I know it’s never going to happen, but I can’t think of any other way around it. By compartmentalising the psychotic killer from everyone else, everyone else is not tarnished by their crimes.

        The press can then go on with their reporting, the public can then go on with their fear, and the majority of people suffering or conquering psychosis can go about their days without needless stigmatisation.

        This issue is mostly brushed under the carpet. And yet it’s probably one of the most burning issues in this area.

        • Why not just categorize people as violent based on their acts of violence? “Schizophrenia” doesn’t need to enter into it, any more than “black violent person” or “rich violent person” or “Canadian violent person” would be legit labels. People from ANY category can be violent. It’s the intentional association of violence with “mental health issues” that needs to be negated.

          • Well, if you can work out some way to inform journalists how to approach a story about someone with schizophrenia/psychosis who in the midst of schizophrenia/psychosis heard voices telling them to kill people, and then went on to kill people, how they should frame their story without mentioning all those details, then I’m with you.

            There are also plenty of examples of psychotic killers that were non-violent until the psychoses kicked in.

            Problem remains that some people with schizophrenia/psychosis/hearing voices kill people and the stigma for their crimes is endured by everyone else.

          • Here’s a random case in point. There are hundreds more just like it. Doesn’t matter so much if it’s a “quality” newspaper, or a rag. The journalists are reporting established facts.

            Let’s take a closer look at one example:

            A MUM-of-two was killed by a schizophrenic knifeman trying to abduct her kids, while her husband listened helplessly over the phone, a court has heard.

            “Defenceless Nicola Cross, 37, was stabbed to death by complete stranger Marcin Porczynski, who had smashed his way into the property in Hemel Hempstead, Hertfordshire, on September 14, 2015.”

            […]

            “The Polish national was suffering from paranoid schizophrenia at the time and had been hearing voices telling him to “free” children or risk harm to his own family.”

            So, maybe him being Polish was much of a muchness, and the story didn’t require his nationality.

            But he was clearly in psychosis at the time of the murder. He heard voices telling him to kill children. And he believed in some convoluted way that this act was righteous and necessary.

            Now please, respectfully, how should a journalist go about reporting on such a crime? You seem to be suggesting that his delusion, his psychosis was irrelevant. When really, in the moment, hearing the voices and the delusions he’d built up were central to his act of murder. Are you suggesting that these central, key elements are irrelevant?

          • “Schizophrenic” Risk Representation,

            What I would be interested in, would be the back ground to the event.

            Because my own Suicidal Acting Out, (and Disability) stopped when I carefully stopped taking “medication” suitable for “Schizophrenia” in 1984.

            https://www.madinamerica.com/wp-content/uploads/2016/11/Suicide-Associated-with-Akathisia-and-Depot-Fluphenzaine-Treatment-KShear-1983.pdf

            Akathisia.
            The Suicidal “Acting Out” was related to Starting, Stopping, and Changing “medications”. The Disability had been continuous.

          • Rebound Syndrome Risk.

            Abrupt withdrawal from Neuroleptic drugs can cause Acute Psychosis in a person as a “reaction” to drug withdrawal – above and beyond any underlying condition.

            If a person withdraws carefully from Neuroleptic drugs they can tell themselves, when they need to slow down.

          • The one article referenced by redux shows some insight into the phenomenology, the structure of which is quite common: “was suffering from paranoid schizophrenia at the time and had been hearing voices telling him to “free” children or risk harm to his own family”.

            This is a good example of voices making threats to the hearer that are experienced as real enough to create fear that demands action.

            The voices have threatened the hearer’s family – and have suggested an action to avoid the threat. In a state of fear :
            – the chemistry of fear has the effect of a temporary frontal lobotomy that precludes clear thinking because
            – the body is primed to act … and it is action that will resolve the fear
            – the hearer cannot flee the threat
            – voices are suggesting, putting the idea in the mind in this state of searching for an out… and
            – declaring that this is the ONLY action that will resolve the problem… and
            – creating a sense of urgency, to get the person to act in the moment of greatest fear

            If the hearer believes that the voices can carry out the threat, and a record of ‘paranoia’ suggests s/he gives it significant credibility, then the compunction to act as suggested is strong, absent a clear alternative.

            By helping the hearer understand how these conditions of distress create the paranoia, we can help people recognize that the problem (threat = conflict + consequences) are not real. Education rather than medication and confinement can help prevent the extremes.

            The majority of people who hear voices do not act on threats that go against their basic respect for safety – instead we panic, a state of uncertainty about a course of action…. which eventually subsides when the person is able to disconnect from the voice stimuli (the threat, that holds attention) and reconnect to ordinary stimuli around them that are not threatening.

            Which means that voice behavior: creating conflict, the power of suggestion, inserting a specific action in the moment… plus voices “style”… aggression in the moment, a “do it or else” theme to exaggerate urgency… is a significant factor.

            I am not offering a moral perspective, simply a technical one that aids in understanding how phenomenology contributes to experience… and sometimes action when extreme states spill over.

            We are not serving people well if we are not helping them understand the experience and and to anticipate it to reduce the paranoia and fear that drive the need for care.

            We can reduce the number of potentially dangerous situations with education. If we can help people feel more in control of their experiences we will in time stop tagging them as dangerous.

          • Greg,

            You describe the dynamic very well.

            I’ve never heard voices myself, but I did experience Dreadful Anxiety when I withdrew from strong medications. What I could recognise was that once the Anxiety passed off the “crisis” no longer existed because I was seeing things differently.

            Eventually I realised that “anything” frightening could be seen in a way that wasn’t frightening.

          • Thanks Fiachra, that’s it – state of mind affects what we “see”, which is our perception in the moment.

            We can help PREVENT extreme states by helping people understand how they happen, to catch the build up early and disrupt it.

            The mere presence of voices leads us to form beliefs about them because we do not know what they are and we try to account for them. If they behave badly we form beliefs that give them power.

            Their persistence creates the conditions in which distress escalates. Voices drag us (the mind) into these spaces where :
            – we can neither prove nor disprove anything, where they distort our representation of the world (not the world itself) via a de facto relationship in which they assert power/influence. From this position:
            – they insert conflict that makes us focus on the threat, THEM and
            – the “evidence” they present, which IS frightening
            – which “holds” our attention and
            – the brain sends blood to the body to fight or flee, NOW, neither of which is an option
            – in the moment of need, they offer a way out, “do this”

            We have to help people recognize the staging… the setting of the scene in which we lack the evidence to prove/disprove anything so that we dismiss the conflict and threats before voices are able to escalate the distress to extreme states that shut down rational thought. We can disrupt the build up to prevent ever getting into the extreme state.

            And if we can routinely help people do that, “schizophrenics” will no longer be dangerous because they will have control of their experience. We have to give people the tools to address the problem if we want to address stigma.

            For those who want to see more, in this 40 min video I isolate five phenomenological characteristics in my first few weeks to show how this staging happens. Note how:
            – Just two comments from the voices I heard established a perfectly rational ‘delusion’ that inserted conflict
            – My distress escalated in line with changes in the location of where I heard voices… the gradual ‘staging’ that made the perceived problem worse and kept sensible action out of reach, eventually causing panic at being unable to escape.

            We have to spot this six week build up to disrupt it – had I known at the time that I was caught in a fake problem the distress would have been minimal.
            https://youtu.be/7s–ldk-5bw (Mapping early episodes)

          • If people choose to murder because they hear a voice telling them to do it why are they obeying the freaking voice anyhow? “Just following orders” didn’t work as an excuse for the Nuremberg Trials.

            Szazs argued that hallucinations are caused by lying to your subconscious. If a man hears a voice saying, “Murder your wife,” and obeys it, he must have desired widowhood. He dreamed up the voice to help him accomplish it. Just like a man coping with overwhelming feelings of inferiority decides he must be Abe Lincoln.

          • Back just 100 years ago–or less–there were the harmless madmen/madwomen and the (very few) dangerous lunatics. But, salivating over all the repeat business they’re assured of for promoting their defamatory lies, shrinks tar all the SMI with the same brush and swear it’s permanent (no one said that 100 years ago.)

            You never get better, you can only be muzzled chemically. In me power! Broohahaha!

            And if you seem better you have anosognosia. Therefore you are doubly a menace and must be locked up for your own good. How dare you act normally when the “experts” have designated you insane for life?

          • The kids are all knifing each other in the UK. Messy business but thankfully they can’t get their hands on guns, for the most part. So we don’t have kids conducting spree killings here.

            I’d say the majority of adults are probably too immature to be trusted with a gun.

      • And so before and yet again, here we are afore the dark spring of stigma, a solemn place few dare speak of, or hold their gaze upon, and I dare speak, and someone passing rapidly in the distance dare answers, and I look around me, and there’s no-one there’s no-one, they’ve retreated to the distant hills to regather with the tremulous warriors against stigma, who prefer to talk about alternative nouns, and like to spend their time quanitifying things from 1-10, and applying for grants that enable them to remain in the hills, and some of them have a talent for abstract painting, and others enjoy talking about these abstractions, and writing about their throughts, but never wishing to be afore the actual thing itself, that dark spring of stigma, because they can’t 1-10 it, they can’t rename it and make it go away, because it’s unsettling and brutal and difficult and life is better here, far away in the distant hills.

        • Rasselas.Redux,

          If you look carefully, a lot of the “Crazy Schizophrenic Behavior” publicised in the Media follows an abrupt withdrawal from Neuroleptics. The Article often includes “..Schizophrenic not taking their medication..” when describing the tragedy.

    • That’s a healthier progression, in all truth.

      Stop running away. Stop internalising the shame. Stop making others feel shameful about their disability.

      Reclaim the term. Don’t be ashamed of it. Don’t be ashamed of who you are and what you’ve been through. It’s a enormous triumph to survive the challenges of schizophrenia. Take pride in your triumphs!

        • Don’t worry about it. I’m thick-skinned.

          As for regaining a life, I’m not really one to advise. I have never regained normality and long ago abandoned any hope of it.

          If you are lonely that’s good. Your being is making you feel uncomfortable and driving you to do something about it. Of course, one possible outcome is masochism, in which you simply dwell in pain and find some way to adapt to it. Or numb it.

          If you want human connection go to where the humans go. If you are afraid of being judged over your past take solace in that the majority of people also have insecurities. If they don’t, they are more likely to be narcissists and thus best avoided.

          Just trust your gut and be humorous. Everyone loves humour. (that isn’t entirely true I know but it sounds positive and motivating)

  3. If I was to attempt to claim in the UK for a 30 year old obsolete bad back from Ireland, on account of “diagnosis”, I would more than likely be jailed.

    I have 30 years of wellness, non dependency and non expense, in the UK, yet I’ve had a GP Practice in London W2 5LT attempt to claim for me as an ongoing “sick person” 30 years later, on the basis of a 30 old record from Ireland carrying a “Mental” “Diagnosis”.

      • The Label seems like a good thing at first. “Hey, I can do whatever and no one has the right to hold me accountable cause I have a screwed up brain. Be nice to me everybody!”

        Then you realize you no longer exist as a real person and no longer enjoy the rights of citizenship. You can neither love nor be loved. The drugs make the alienation worse and provide their own exquisite torments. And no one believes a word you say…you’re crazy after all.

          • Off since August 31, 2017. My taper began in March, 2016. Effexor took over a year. I went cold turkey off Lamictal after only 13 days of taking it. Abilify took 10 weeks to quit.

            Effexor withdrawal lasted 13 months. Depression and suicidal thoughts vanished about halfway through my withdrawal. No mood swings or “weird” thoughts or melt downs. Except one time in the single wide I was sharing with my parents and Dad accused me of being manipulative. I got upset, yelled, and burst into tears. My folks begged me to get help. I realized I still had bad habits and was falling into old behavior patterns I no longer needed. I delayed my taper and called Will Hall for a session.

            Haven’t been “manic” in 17 years. The SSRIs created it since I never had it before I started anafranil.

            I itch all over and my skin is horribly dry. Congestion and cough most of the time. Chronic aches and muscle cramps and weakness. Headaches sometimes. Digestive problems. Hair loss, brittle nails, hoarse voice. Metallic taste in my mouth. Anemia and other deficiencies even doctors admit to. Sensitivity to loud noise in the morning. Like waking up with a hangover every day. Crying too often. Tired all the time.

            This started before my taper. Long term drug effects. But my taper seemed to worsen the suffering. Probably stressed my system. It helped me lose weight though. It also kept me from developing diabetes like everyone else in day treatment and prevented further heart damage. My arrhythmia is better now. The doctor wonders why.

    • Hi Greg,
      Nice to see your comments. Our NIMH still funds research with DSM categories, although as you noted, under Thomas Insel, our former NIMH Director, stated our “patients deserve better” than DSM. The hope was RDoC would be more scientific. But the agenda is at root a reductionistic one-Insel saw “syndromes” like “schizophrenia” as being “caused” by inefficient/dysfunctional neural circuits and genes. No real emphasis was given on the biological embedding of adverse social experiences-including across generations-which there is now firm evidence for. Social and psychological factors are still sidelined. Brian

  4. Please sign my petition to the WHO & APA to drop the scientifically challenged and highly stigmatizing term “schizophrenia”
    Thanks,
    Brian Koehler PhD
    New York University & Columbia University
    New York, NY
    https://www.madinamerica.com/2017/12/apa-drop-stigmatizing-term-schizophrenia/
    https://www.change.org/p/american-psychiatric-association-apa-drop-the-stigmatizing-term-schizophrenia
    Spanish translation thanks to Ana Sofia Rodriquez from Mexico:
    https://discapacidades.nexos.com.mx/?p=65

  5. Fiachra May 29, 2018 at 5:37 am
    “Schizophrenic” Risk Representation,

    What I would be interested in, would be the back ground to the event.

    ———–

    I get you. From one extreme to ther other. From the drugs had no involvement in this to the drugs are entirely involved in this. So, say, before the advent of neuroleptics, there are no crazed psychokillers in the historical record?

    Don’t get me wrong. I have first-hand knowledge of the rage reaction that can be be induced by antipsychotics. Shortly after commencing Abilify, I was strolling through a highstreet, and suddenly, out of nowhere, a red mist came down upon me, and I was uncharacteristically wanting to throttle a random passerby. It was disturbingly bad. So I hurried myself to a callbox. Explained to a professional what was happening. Stop taking it, they said. Stop taking it now. Get away from people. And I took their advice. Sage and straightforward as it was. And within a few days I was back to my normal, nonviolent, fear-fucked self.

    So yes, that’s one way the narrative needs to change. We need to be including in all our investigations after the fact, an honest look at the possibility that it was the drugs wot done it. But we mustn’t be carried away with antipsychiatry zeal, and try and create a culture in which it was only the drugs wot done it, that psychokillers are manufactured purely and only by psychiatry, because that is simply not true at all.

    That’s one possible way ahead to fight against stigma. To nurture a cultural change in which people are properly warned. So, perhaps, more often, like me, and others like me, they are able to nip the rage reaction in the bud, that they are properly warned and properly supported. And the public too are properly informed.

    But here again this dark spring of stigma just won’t stop flowing. Because assuming the above proposals theoretically made ground, we now have a public that is informed that everyone taking drug treatment for schizophrenia/psychosis/hearing voices or wotnot is a potential psychokiller because of the drug treatment itself, and we’re back to square one, and running back to the hills again to regroup, apply for grants, do a bit of abstract painting, and 1-10 all that is unknown in the world of mentalness into deluded submission.

    • Rasselas.Redux,

      There were always crazy people that killed people before neuroleptics were introduced. And there were non crazy people that killed people in fits of anger or jealousy (or when they were drunk).

      BUT IT IS THE TREATMENT –
      I was given permission to discontinue Neuroleptic Long Acting injection in October
      1983 and I ended up in Hospital in December 1983. And I ended up in Hospital again a month or two later, and again in April of 1984. BUT, I eventually got off the Neuroleptic Injection for good.

    • Yes. Psycho came out long before the drugs came out.

      Peter Breggin does have valid points about how the SSRIs may cause/exacerbate violent tendencies.

      If I were to present the argument it would simply be that the drugs are not working at stopping killing sprees. The psych drugs taken escalate as do violent crimes. Is it causative? My guess would be no, or at least not entirely. But drugs do not work at moral rehabilitation of bad people.

      • @ Fiachra

        what I’m harking on is how the primary source of stigma is never addressed. the primary source of stigma is the psychokiller. so if we swap out nouns and try and hey presto! stigma away, it’s disingenuous.

        ive lost count of the number of calls for noun-change, for signing petitions, and blaming all the stigma squarely and only on the noun, and a lot of the time, its all the same faces, all over again, and I have to ask myself, are these people actually all that committed to this problem, or is this just another round of golf, or just some public relations exercise to keep certain faces relevant and right-on

        the psychokiller and the nonviolent person are assigned the same ssignifier

        whether that is scizophrenia or hearing voices or psychosis zx spectrum disorder or adjustment disorder or whatever

        so long as the killer and the nonkiller are assigned the same nouns, the stigma will go on, regardless of any effeorts to persuade people way from the brutal realities of life

        so one day you can have say jacqui dillon — who is genuinely a nice person — talking about hearing voices and how she adapted to the experience, and the next youll have the psychokiller voice hearer headlining in the press

        and given that jacqui dillon’s voices are central to her success and her popularity, and that the psychokillers voices are central to their killing and their notoriety

        how do you prevent the one from stigmatiising the other in the public imagination

        I dont slaim to have the answers

        but a willingness to address difficult issues like these might lead us to solutions

        but such considerations are censored by the anti-stigma initiatives

      • @ rachel

        I think you have a problem in the usa, and I have no suggestions about how you can solve it

        there are influential people on MIA that believe you have a constitutional right to bear arms and shoot bullets into people, for personal protection

        these same people are against society bearing arms (brain drugs) and putting them into people’s bodies as a form of societal-protection

        locate the hypocrisy and that is usually where you’ll find the beginning of a solution

        peter breggin’s book helped me steel my resolve to get off antipsychotics and stay off them. like many people I am deeply indebted to him

        however, human all too human, and his recent provocations about spree killings and psych drugs is actually compoiunding stigma, as I’ve explained above

        its also a way for gun lovers to bury their head in the sand

        “But drugs do not work at moral rehabilitation of bad people.”

        I think they can help the process, for some people some of the time. the secure hospitals in the uk such as broadmoor do have successes with intense drug/therapy treatments and help people that have committed some horrendous crimes to attain stability and go back into the world and not be posing a risk, most of the time

        • For my part I have never known a person to become morally upright because of psych drugs. They numb empathy and shrivel the frontal lobes that provide impulse control.

          Are you in favor of forcibly drugging folks like me to make us “better behaved”? While drugged I could not control my eating, socialize with people, or keep my apartment clean. Is that an improvement?

          And all we have to go on that the people are safe to be around is the shrinks’ word. No proof that the drugs were helpful in preventing further crimes.

          If you refuse to take your “meds” why do you keep extolling their virtues?

          • I don’t know how it works in the usa / many of the people that end up in broadmooor in the uk would be shot to death in your country as police attempted apprehending them / apparently according to some it is okay to force bullets into peoples bodies but not to force drugs into their bodies / i may have that wrong and apologise in advance / that is a cultural problem

            if you were for instance cutting peoples heads off because of a severe and unbudgeable psychosis i would expect that you were treated compassionately / that would include you being offered the insanity defence / i would then condone you being placed somewhere against your will and offered rehabilitation / free breakfast lunch and dinner / access to some television and as much bum sitting as you wanted / i have not spent any time in a top level forensic unit / i say that to underline the fact that any pontifications i make about these areas are from a naive and purely hypothetical point of view / if you posed a danger to patients and staff then in my ideal world you would be tranquilised with opium and ketamine and other sedating agents / id force you to take ecstacy and laughing gas / yes that is appalling to some people / im afraid that in that context i would condone forced drugging against your will / in my ideal world antipsychotics are banned / i concede that is entirely motivated by personal experience and rejecting the testimony of people claiming benefit from them / on that issue im being a bit of a [beep] / i keep my gob shut about it in the real world / online everyone has massive balls / myself included / that is an internet problem

            drugs dont help people become morally upright / actually scratch that empathogens can help some people reconnect with or grow a moral conscience / there are obscure studies proving this / okay studies in the human sciences dont often prove anything / however some are helped out of psychosis by psychiatric drugs and that can help them overcome their compromised conscience especially if combined with therapy / so ive read / that is a knowledge problem

            i am not in favour of forcibly drugging people that have committed no crime / i am torn about forcibly drugging people that have committed the most heinous of crimes once rehabilitation is achieved / seems to me a ticking bomb given that they will now be prone to possible intense relapses should they cease the drugs / i simply dont know enough about this darker side of things to make absolute comments / neither do you / quite possibly neither does anyone / that doesnt stop all and sundry writing about this area as if from expertise / that is an internet problem

            i do not refuse to take psychiatric medication / i dont have an allocated psychiatrist and am not prescribed any / i am therefore unable to refuse that which is not offered / i forgive you for being presumptious / that is an internet problem

            actually in my ideal world the prison system and the psychiatric hospital system would be dismantled and some new model of rehabilitation would be formulated / along the lines of the norwegian christian-ethic prison system / to lesser or greater extents our non-scandinavian cultures are baying for blood / we are driven by the need to humiliate and avenge / it is unlikely wed go all in on a christian-ethic rehabilitation model / the anti-christian death penalty being a significant hurdle to progress / that is a moral problem

            i do not extol the virtues of psychiatric drugs / i realistically and grudgingly accept that some people are helped by them some of the time / i was once like you and projected my personal experiences onto the whole shit-show / eventually I evened my thinking out / that is a bias problem

            if you arent helped by drugs then no-one has the right to force you / actually they have given themselves the right to force you / dont give them a reason to force you and then they cant force you / easier said than done / that is a survivor problem

            you are now in the very difficult position of learning ways of dealing with your symptoms / if you are symptom-free then go forth and seize the day / if you arent symptom-free then blaming psychiatry for all of your problems is going to seriously hold you back in life / i know that from personal experience / that is a survivor problem

            it takes a long time for the brain to heal / it will not fully heal / dead brain cells do not grow back / there are numbskulls that say you can grow the brain back / neurologists know what they are talking about / that is a brain problem

  6. – What’s wrong?
    – I encountered a man.
    – Where?
    – At the dark spring of stigma.
    – We told you never to go there.
    – I lost my way a little. I stumbled upon him.
    – Didn’t we tell you to take care?
    – I’m sorry. I’m sorry, it’s just that-
    – Did you communicate with him?
    – Well…
    – Did you?
    – Yes. Yes I did.
    – We have told you about the forbidden people. Have we not?
    – Yes.
    – And the forbidden places?
    – Yes.
    – This is serious. You must never go there. Stay here, in the distant hills of abstract thought, amongst your comrades, the tremulous warriors aginst stigma.
    – I’m sorry… I’m sorry, it’s just that-
    – He’s confused you, hasn’t he? Did you gaze upon it?
    – Yes I did. I did! And it’s nothing like you told me. It’s nothing like it at all. I can’t put it into words. I can’t 1-10 it. I can’t get it out of my mind.
    – You’re back now. And you’re safe. You’re safe here with us, your brothers and sisters, the tremulous warriors against stigma.
    – I wished I’d never been there. I wished I’d never communicated with that man. My head, my head it’s-
    – Listen. The rules are simple. Never venture close to the dark spring of stigma. Never gaze upon it. Never think about it. And if you encounter that man, ignore him.
    – But how will I know him? He has so many faces… he face was changing as he spoke.
    – You will know him because he has no suffix or prefix to his name. His thoughts and considerations are thus a debasement, an irrelevance.
    – But he said he was one of our stock, that we tend to, and control. And feed from.
    – He claimed to be an “expert-by-experience”?
    – Yes!
    – The audacity!
    – And he said that many of his words are now on your lips. That many of your words came from him-
    – Lies! Deceit! Filth! He has no suffix. He has no prefix. We have given him no status. We have given him nothing. He is nothing! Nothing!
    – I’m so sorry-
    – What did he say? You must tell us? We will assimilate his discourse. We will make it ours. That way we will vanish him. Vanish him!

  7. Being labeled “severely mentally ill” is the ultimate shame. I loathe my damning label so much I would consent to have a limb amputated to get it removed. There are only three solutions once you get a label unless you enjoy public shame. (NAMI’s so called stigma busters.)

    1. Relocate to where no one knows you and avoid doctors at all costs.
    2. Shell out large sums of money and travel to the other side of the continent if necessary to become publicly exonerated as sane by a medical professional. You probably need a lawyer too because of records.
    3. Suicide. It’s common for those in other cultures to kill themselves after public humiliation to “save face.” Since this goes against my religious beliefs the next best thing is withdrawing from all public life and becoming a recluse.

    Sadly I may choose number 3. (Recluse option.) I score high in agreeableness and get along better with people than ever, but I refuse to undergo the public humiliation of being called “Bipolar.” It IS a SHAME I cannot bear! I would rather live in isolation forever than endure the scandal.

    Anyone who pretends it’s no big deal must be an emotional masochist who enjoys being degraded and mocked. Or maybe they just are way less sensitive than most of us.

    My mom turned on me. Alternating between excessive control and disgust/contempt for the shame I brought upon her, things never have been right between us since the doctor told her I was incurably insane at age 20. Both parents told me no one would ever love me because of my SMI. Mom tells me I should be grateful since no one but her could put up with me. Sigh.

    • Most people I encounter these days seem much more sympathetic to the sufferings of schizophrenia than they did 20 years ago. Also I think after a while the word loses its hold over you. I think that is usually a result of a process of acceptance. As time passes, and stuff happens, you are more able to face up to the fact that you have a cluster of symptoms that get to be called schizophrenia. Resultingly, you are able to go a bit gentler on yourself, and come to terms with a variety of disadvantages that, even if it wasn’t given a noun, would nonetheless put you in a seriously disadvantaged position in life.

  8. Yes! Treat people like people!
    I found that virtually 100% of patients who were willing to talk honestly with me had trauma in their lives that were causing their symptoms, and it was vital to not give up on them because of diagnosis. Even an apparently impenetrable thought disorder can be breached, with patience.

    • @ Greg Shankland

      “We are not serving people well if we are not helping them understand the experience and and to anticipate it to reduce the paranoia and fear that drive the need for care.

      We can reduce the number of potentially dangerous situations with education. If we can help people feel more in control of their experiences we will in time stop tagging them as dangerous.”

      I agree with you, in principle. In a society that accepts voice-hearing as just like any other human experience — there is a greater chance that those voices can be negotiated, and that any delusional narrative that often arises from the experience can itself be addressed before it takes an absolute hold on a person.

      However, I’m also realistic. A life is often messy, chaotic and unpindownable. People have all manner of groups to attend to work through their difficulties: AA and codependency support groups. These are for people that have recognised they have a problem and seek out others.

      But who seeks out help for a problem that they do not recognise as a problem? How many alcoholics attended AA before they had a problem? How many codependent people attended codependency support groups before their tendency towards codependency became a problem?

      Some people who hears voices never consider it to be a problem, ever, at any point in their life. Must we demand that they do, just in case? What I mean is, how do we avoid further stigmatising voices if we suggest that everyone who hears them has a potential problem, and must thus stand forward and be counted, just in case?

      Delusional thinking can overwhelm very rapidly. So yes, I agree that a culture that is more open to such experiences would be a better one for many people, I don’t think that openness alone is the answer.

  9. @Rachel

    Off since August 31, 2017. My taper began in March, 2016. Effexor took over a year. I went cold turkey off Lamictal after only 13 days of taking it. Abilify took 10 weeks to quit.

    […]

    That’s quite an achievement. But too soon to be talking symptom-free. I wrongly assumed you’d been off much longer. I apologise.

    I have been off antipsychotics for nearly 20 years. Everything else official for about 10. I used black market benzo-variants for sleep for a while, off and on, following a vicious street assault. when the law in the uk changed, i stopped getting them. i weened myself off them very rapidly. it was painful but id rather get things done.

    i have lost count of the number of psychoses and manias I’ve gone through in the last 20 years. I have periods of relative calm. but they dont last long. it is occasionally suggested to me that im a masochist. maybe they are right.

    if you think the drugs caused mania i am inclined to agree. ive seen it happen to people a number of times. unfortunately i get psychosis and mania quite frequently. i am a rational sceptic. i dont use drugs. i dont cause a fuss. largely i suffer alone and in silence. it puzzles me how people are able to get to a point of being symptom-free. but i suspect they never suffered in quite the same way as i do. i mean, they had some actual problem they could address. i dont seem to have a problem that can be addressed.

    i wish you luck for the coming years.