The Schizo-Stroller

“Whoever goes voluntarily to a psychiatrist entrusts that person with their emotional suffering. This situation is very similar to that of a believer in the confessional. The doctor who precribes a psychiatric drug thus exercises a function akin to that of a priest… We are all believers; in the past most people were believers in the religion practiced around them, while today most of us believe in science. One part of our belief in science includes our belief in doctors, including psychiatrists and their words – expressed, after all, in the name of science. Just how unscientific and uncertain those words are is, of course, only clear to those who study this field.

If the psychiatrist or the doctor is a respected expert – as the priest used to be – who can influence the subjective state of the believer’s soul with words, and if the doctor is able to convince the believer of the positive effect of the treatment, then the same holds true when the experts use their authority to predict a relapse if the patient stops taking the psychiatric drug…

Anyone who is labeled schizophrenic is given high-dosage neuroleptics in the hospital. This treatment is not prescribed in a simple, cool and unemotional manner. For the psychiatrist it is of great significance, it is the most important thing they can possibly tell a ‘schizophrenic.’ Their message is loud and clear:

‘You are ill, you are schizophrenic. That’s the way it is, it is your fate. The only possibility you have of leading any kind of normal life despite this illness, is if you take your neuroleptics. You have to realise this, we expect you to recognise that you are ill. If you do accept this we will discharge you soon. We will see to it that after you have been discharged you will go regularly to a general practitioner or psychiatrist who will prescribe you neuroleptics. We would prefer if you had a depot injection of neuroleptics every two or three weeks; then we would be absolutely sure that you don’t forget to take your tablets out of negligence or because you don’t understand the need for them. If you don’t belive us, if you refuse this absolutely essential treatment you are making a very big mistake because you will suffer a relapse within the forseeable future and sooner or later you will be sent back to hospital. Never forget, you are ill, you have the predisposition for schizophrenia in you, you are vulnerable, easily hurt. The symptoms of your illness can appear at any time, even though at times you’ll feel better. Don’t let yourself be persuaded by any irresponsible people that you are sane, that you can live a good and useful life without medication. That would be a great mistake, we know better. We have a great deal of experience with this illness. You must believe us! You have no choice. You need neuroleptics like a diabetic needs insulin’

For the duration of their hospitalisation they are confronted continuously with this point of view. they don’t just hear it from the doctor, they hear it from all the staff several times a day. Relatives also play an important role. They hear the same message. Relatives are given the task of making sure that those they are responsible for can live a protected, irritant-free life without excitement. And most importantly, the relatives must see to it that the ‘patients’ take their drugs regularly… In other words, the relatives are put under pressure by the opinion that the person affected is ill and that the only possible way for them to avoid further hospitalisation is to be aware of their ‘illness’ and the risks they face, and above all to keep taking the prescribed psychiatric drugs.

This behaviour leads to illness. It creates immense pressure which is almost impossible to escape from…

Most of those affected believe more or less al lthey are told. They identify with the diagnosis. They accept that they are ‘schizophrenic’ and therefore different from the rest of the ordinary members of society. And along with the diagnosis they accept the ‘fact’ that they are at risk. Put another way: the contact with the psychiatrist causes them to be anxious, extremely afraid of another outbreak of the ‘illness’. But things don’t stop there. Not only are they themselves anxious, all those around them are anxious too – both their relatives and their psychiatrist as well as other professional helpers. Those caught up in this scenario – both during their period of hospitalisation and after – are surounded by a climate of fear. They are afraid and the people around them are afraid. They all fear another outbreak of the ‘illness,’ the ‘psychosis,’ the ‘schizophrenia,’ another ‘episode’ and another period of hospitalisation.”

(Marc Rufer: ‘Creating Fear/ Removing Fear – When you wish to withdraw the opinion of your doctor can be dangerous’ in Lehmann, P (ed.) ‘Coming off Psychiatric Drugs’ 2002 Peter Lehmann Publishing)

“I am not a man! I am a free number!”

I recently failed an Employment and Support tribunal on the grounds that if I can do a PhD, albeit part-time I can work. Apart from the trite protest I make, to translate what I say into ‘common’ language (thus losing something in translation and relying on generalised suppositions) that “I have a mental illness not a learning disability”. Something that I was not able to come up with until after the decision. I was unable to say, being unrepresented legally at the tribunal for reasons partially due to government regulation on legal aid, that the reason that I can do a PhD is that being theory based I can practice a Socratic method with my voices in the comfort of my own home whilst studying, something I would not be able to do in the majority of jobs I can think of.

I will do reading, then cogitating on what I have learnt will think about it as I wonder around, at which point my voices will interject. They are usually, pointless, prejudiced and narrow minded and not considerably academic interjections however what they do do is allow me to come up with a suitable defence thus streamlining my thought process, determining to myself that I understand what I am reading and writing about.

This considered, I was fascinated to read in an unpublished PhD thesis of Terence McLaughlin, the late Hearing Voices Network activist and editor of Asylum magazine, comments from his voices, which he included in his thesis whilst writing, the voices thus becoming part of the thread of the text.

It seems it is not just me who is capable of this, or who has done this. That is nice to know. Thankyou Terence.

Seriously, this was a search term someone used to find my site.

So here’s the answer: Don’t!

Being ‘disciplined’ by others is highly likely to be a factor in their breakdown. So unless you’re unusually cruel or un-self-reflective, leave well alone.

Please! I mean this – PLEASE! For ‘whatever you believe in’s sake, DON’T!.

A lot of people who seem to cope with hearing voices seem to have some belief that their voices are those of dead people, as do also many who don’t seem to be able to cope. The difference seems to be the power of the voices over the voice hearer.

I’m not arguing for against this reality, but let us take it hypothetically to be true. Those who can pick or choose whether or not to believe the voices they hear seem to be able to get this power relationship right. Those who seem to feel their voices have some powerful all-knowing wisdom that is superior to theirs don’t.

So what does this mean. Well in plain english those who cope realise that just cause Uncle Ned is dead, doesn’t mean he’s somehow magically reached nirvana. If Uncle Ned was a tosser when he was alive, chances are he still is. If you think he’s talking shit you’re probably right.

I could go into coping mechanisms being affected by previous relationships with authority figures, the ability to be heard in personal relationships resulting in feelings of powerlessness etc etc but the above paragraph probably says it better

We often blame the ones we lose for our loss. At least when the cause is a death you can’t hurt them by doing so.

For various reasons my wife and I have been looking at a form of communication called Non-Violent Communication (NVC) developed by Marshall Rosenberg. It is used and taught to counsellors, military personnel, aid workers, corporations around the world. It is at its base level a counselling technique that aims to allow one to fulfill  needs (based largely, but extended, on Maslow’s hierarchy of needs) through identification of the feelings triggered by these needs not being met. It also teaches one to empathise with others, which ultimately requires learning to listen – properly i.e. not giving your opinion; not telling someone what they are doing/ feeling wrong but accepting that what they are saying is based on what they are feeling and thus one can hear their needs. Combined these techniques allow one to communicate effectively with others.

However my wife and I have found this difficult. I can empathise, it’s a struggle, I fall into patterns of saying ‘Oh well you should do this’ or I end up being defensive and making excuses rather than saying for example, ‘Oh you’ve been looking after our son all day and you are feeling tired and you would rather I didn’t ramble at you as soon as you get home about what I’ve been reading  because it makes you feel irritated.’ But I can do it although sometimes it takes the shit to hit the fan for me to realise I haven’t been listening and I need to do so, quickly. However I am getting better, and it is amazing what just listening to what someone has to say can do to their self-worth.

This of course has relevance to Hearing Voices Groups and their efficacy but this is not the aim of this post. As I said I can empathise, but expressing my feelings is hard. Perhaps that is why I facilitate the groups in an NHS setting rather than participate as a member of HVN? Now I must say both my partner and I find the language awkward, unnatural and unwieldly, although we get the principles and try to use them in a more colloquial way. Own your feelings, don’t say ‘you’ say ‘I’ etc. However, my difficulty is not so much the language but actually identifying my feelings. We have printed out a list of feelings and we refer to them when we need to express ourselves but I seem to be unable to actually identify them unless looking at these sheets. If I read them then I can go yes that is what I am feeling, if you ask me without the sheet, then it is ‘I dunno’. Currently my partner is reading Why Love Matters by Sue Gerhardt and she has identified this as a disregulation between the emotional and symbolic parts of the brain. I’m not keen on the term ‘disregulation’ but for lack of better knowledge I’m stuck with it. Language is often no more than the failure to express our thoughts and emotions and thus becomes the use of what is available as the next best thing, something that comes from a shared experience but is never truly our own. Anyway, it seems I am perfectly at ease at identifying my emotions in text but not in verbal language, according to Gerhardt this is due to early experiences often due to a significant other having a similar problem.

I have to point out right now, this is not ‘blame’, I do not like that word and is often bandied around as a censoring accusation due to an inability to take responsibility for our actions. If I cannot learn from my history, my psychological make-up, my experiences, my life and all that has occured in it then I cannot develop, I cannot move on. As Habermas suggests without learning from our mistakes and those of others then all learning (copying, memory, rote etc) is merely accidental. We make this world and this world makes us. Deal with it. We are both responsible for our actions AND our actions are affected by others. We have to deal with the consequences of our actions but we should not be expected to predict perfectly what they are, we WILL make mistakes. As Hannah Arendt points out if we cannot forgive then we are stuck in a circle of vengeance. Of course it does bring up the important question of how we can have action, political or otherwise, that does not stem from ressentiment or the position of a schöne seele, a belle âme, a beautiful soul.

So at this point I jump. Why bring this up? I’m reading Giddens’ Capitalism and Modern Theory at the moment, primarily as revision for teaching and while reading Weber’s ideas on forms of social conduct I started thinking on his views on rationality, primarily as I am trying to apply Habermas to Hearing Voices Groups. Weber has four basic forms of social conduct.

1. Purposively Rational Conduct, the individually rationally assesses the probable results of a given act in terms of the calculation of means to an end.

2. Value Rational Conduct, is directed towards an overriding ideal.

3. Affective Conduct is that which is carried out under the sway of some sort of emotional state and as such is on the borderline of meaningful and non-meaningful conduct.

4. Traditional Action is carried out under the influence of custom and habit, and as such is also on the borderline of meaningful and non-meaningful conduct.

So if we return to NVC, we can understand our affective conduct as an expression of unmet needs. Weber understands it as action for its own sake, if we are to understand NVC this is not strictly true, but it is not purposive or value rational, it may borderline traditional in the sense that we often return to learnt habits from others when acting emotionally. However I would argue that NVC brings purposive rational conduct, or instrumental action into this by having as a goal the fulfillment of one’s needs (I would argue however that it is not strategic action, NVC requires plain language that avoids perlocutions). Thus it brings a reason to affective conduct, or a source of reason. Psychological blocks, or as I now call them having learnt the etymology of the word from the Ancient Greek for ‘obstacle’, satans, are what gets in the way of purposive action. And as such, if not rational in the sense that rational is often contrasted to affective behaviour, are reasonable forms of conduct. Interestingly enough this is attained through communication, but contrasts, as instrumental behaviour, slightly from Habermas’ ideal type of communicative rationality.

Of course Weber’s concept of rationality stems from Kant, who wished to divest all emotional or affective thought and behaviour from reason. Thus we have a form of alienated soul, where the ideal of pure reason, the transcendent external God is separated from its emotional blocks, its satans. If this is the case, how can political action escape from the subject as beautiful soul? How can we subjectify ourselves if we don’t drag along with us our blocks in communication our emotional outbursts? Perhaps Deleuze was right when he stated that in resistance to the Control Society ‘the key thing may be to create vacuoles of noncommunication, circuit breakers, so we can elude control.’ (Negotiations, p. 175)

Since attending the Maastricht conference in September 09, I have been reading up on medication reduction, I have been reading Peter Lehmann’s excellent edited ‘Coming Off Psychiatric Drugs’ and the users experiences recounted in it.

Back in January 2009 I was still working as a taxi driver, I was working 6 days a week and long hours, I had been capitalising on the bank holidays to get extra money and was tired. Additionally family life was hard, familial visiting rites had taken it out on my spouse, to do with issues that I’d rather not go into, suffice to say that I saw by proxy, through the way my partner was treated, the way I was treated in the compex web of family relations and power plays, an interpersonal communicative diagram that I now believe led to my original breakdown and what I had assumed was recovery but had in large part been merely a maintenance, a subjection facilitated by medication. This experience gave me an awareness of a diagram that has given me a fresh perspective on and appreciation, or rather personal understanding, of Hegel and Lacan. In fact it is this awareness that has led to a self-understanding that has helped me understand my own crisis of being (what I prefer to call my breakdown rather than an illness) to the extent that I am in a position to have the strength, confidence and ability to recover enough to consider coming off medication.

Returning to my working as a taxi driver. I was working long hours, family life was hard, and I was taking 4mg of Risperidone nightly. I was knackered. However, I found that the concentration and hard work (stress?) helped reduce my voices (there was another factor that I shall come to that was helping but I wasn’t aware of it at the time). I went to the doctors. I couldn’t do anything about the hours, I had to earn £18500 a year to cover my costs before making a profit. Flexible hours and fixed costs meant that once I’d covered the costs, the more hours I worked the more per hour I was earning (if you ever see a job advertised as working the hours you choose, but that has such high fixed costs, i.e taxi driving, driving instructor. Laugh in their faces. Laugh hard). I couldn’t do anything about the (home) family situation, I can’t change my (birth) family. I could change my medication. I asked the doctor if I could reduce my dosage to help with the tiredness. He agreed that it might help and I was stable, my medication was reduced to 3mg.

I was still knackered. I had to give up my job. However, having decided to see if I could do a full time job after years of crisis recovery (illness) in the six months in which I did so, the government changed the law. From one of ‘we realise you have difficulties/ a disability and it would suit us if you worked so we will help you get one but you are entitled to support and welfare as a human right, one fought for for years, but no pressure’ to ‘we are getting pressure from the reactionary right wing and we want to show we are tough so although we will push even harder the veneer of no pressure/ support/ entitlement to keep the liberals happy in fact we will make the qualifying tests more punitive’. The law had changed from Incapacity Benefit to Employment and Support Allowance and over a year later I am still battling with it.

So I was without a job and exhausted. I started looking for another one, because of my previous training as a mental health advocate I started looking for care work, even signing up to an employment agency. This was still January 09 and I hadn’t been to the conference yet, nor even knew of it. However I was at the time in the process of setting up a Hearing Voices Group, I had been seeing a psychologist through the NHS for what was supposed to be a mix of CBT and psychoanalysis but seemed to be mainly psychoanalysis, the attempts at installing a CBT regime early on had been dropped as I don’t behave. As a child my behaviour regime had been largely a form of guilt tripping – ‘Don’t do that or you’ll make mummy upset’ which any good therapist will tell you keeps them employed. The other form had been institutionalised discipline at my boarding school. Both forms of discipline I react strongly against, one with anger, the other with general refusal, hence my incompatibility with CBT but ease with psychoanalysis. I can talk about myself for hours as long as I have a trained willing listener, otherwise I feel guilty for wasting your time. I had previously attended one of this psychologist’s Hearing Voices Groups and had long talked to him about setting up another group, he had asked me to run one of his but due to the pressures and strains of NHS working practices this never materialised. Then one day he said to me, there’s an RMN at another centre who wants to start a group up, she’d like to talk to you. So I ended up helping set a group up. However to do this I had to run the gamut of NHS volunteer working practices which resulted in me seeing a support worker to get me work (technically within the NHS but a she helped me look further afield), this included advice on benefits including Tax Credits. I was advised not to follow the a path of the employment agency as to get Working Tax Credits I would have to work regularly over 18 hours a week, but due to my exhaustion and the difficulties I had been having with my voices ( my voices had got worse after giving up work) as well as the situation at home I probably couldn’t work more than 20,  keeping these narrowly defined hours of work regularly through an employment agency would be difficult and if I lost the Working Tax Credit I could be worse off than I would be claimimg benefits, it would be far better to look for a more permanent contract, so I went through the process of looking for  jobs.

I still had my taxi licence so there was the possibility of getting part-time jockeying although the pay-off I was learning would be worse than full-time taxiing. I was still looking for care work (and other jobs) but getting nowhere. However I had more free time and as the taxi driving had always been a means to an end, i.e. a means to fund my PhD, a means I was realising more and more was financially impossible, my partner and I decided I would focus on getting a proposal for that together whilst focusing on other things. One of which would be restarting the proof-reading training I had started but required an administration fee to continue as it had been so long since I’d let it slide… I still haven’t paid that fee. However I was phoned up by a guy from the local community radio, who offered me a show, I had sent a proposal in months ago and they liked it. So my life was working on the PhD proposal, co-facilitating a hearing voices group and doing a 4-weekly Contemporary Arts Show on community radio and looking for work. However family life was still hard, my partner was still having difficulties and giving her the time of day required to keep our family together was taking up a large part of the day, I knew why this was and knew why it was worth it but it was emotionally exhausting and my voices were haywire, sometimes I was far better, however at other times I was talking to myself more, even in the street, something I had only previously done before when drunk. But I had more energy and we agreed I didn’t want to go back to 4mg, not least as we were co-sleeping with our son and my partner was concerned about how heavily my medication made me sleep, he slept on her side, in a cot with the side down, so that he could roll over to feed without waking her too much but it was still a concern.

As it turns out this decision would lead to me making some self-realisations that would lead to me taking the path I am now on. My partner and i were arguing, I was giving extra support with child care because we were both exhausted, not least my partner was getting insomnia. The tiredness would also lead to distress for both parties, hence more anxiety, hence, in part, for me more voices. The other part was the reduced medication. Not though because I was getting worse again. I wasn’t in a crisis but I was getting in touch with emotions i had not had for years. I found myself crying, I had not cried except when drunk since I was first put on medication. I found myself getting angry, and I found myself realising this was because my needs were not getting met, they never had, I didn’t know how to ask for them to be. I’d never been given the skills, To help our situation my partner and I bought a book on Non-Violent Communication by Marshall Rosenberg, now I am not talking as a convert, I find the methods, awkward and unnatural but it did give me an awareness that I had difficulty expressing my feelings and hence getting my needs met. I also discovered that I was married to the only person who had ever listened to me, truly listened to me, and the arguments stemmed from communication breakdowns when we were both too tired to listen to each other and the old learned reactions to stress kicked in. But I had met some one who acknowledged me as me, hence, although at times of anxiety my voices got worse, in times of calm, things were better than they had ever been.

Through the Hearing Voices group I got to attend the Hearing Voices conference in Maastricht in September, I about the harm reduction method of medication reduction. I decided to do further research.

I also learned from the Lehmann book, reading the accounts of medication withdrawal that the emotions that I had been going through, were not just because of my home situation but that my medication had always smothered them.

However dues to family difficulties I missed the funding deadline for the year, I did however continue to apply for the PhD, I would do it part-time until the next round of funding when I would go full time, allowing me to work to pay for it. As it happens I did get accepted but I didn’t get a job in time and my grandmother helped with the fees.

Meanwhile I started to get used to the new emotions that I had been missing for the last 15 years, things settled down at home.

However I was having problems with my Employment and Support Allowance, I had failed my medical, I only received 6 of the minimum 15 points required, even though my legal adviser and I worked out that I could arguably have got 42, more than enough. I appealed. I went to tribunal i failed that, the GP and solicitor advising seemed to think a mental health problem was a learning disability and if I could do a PhD I could work, they never asked me about my voices so they never learnt how I use my voices as a form of Socratic method to help work out theory, what job can you do that in? They decided my exhaustion was all down to my family situation and should clear up. I get up at 6.30am, the mentally ill all get up late, negative symptoms are necessarily part of illness and have nothing to with medication as far as they’re concerned. I wasn’t allowed to speak long enough to say how it is the only time I get peace and is a necessary coping strategy to prevent me getting worse. I had written notes explaining my voices but was told not to use them, my short term memory isn’t good enough otherwise but I had no advocate to support me, the local Mind is oversubscribed as funding has been cut and my legal advisor is only paid for, according to government policy, by legal aid to help with drafting the appeal, there is no longer legal aid for the tribunal. In the meantime I was getting sick notes from my GP and he referred me to mental health services, after a long delay I saw a CPN. Initially I was to see the CPN for the allotted 7 sessions to help me deal with my family, or to stand up to them, but we ended up doing a talking therapy on my voices. My CPN was an older, experienced and highly trained CPN, stuck in the new bureaucracy doing short term maintenance work.

We discussed my voices, discussed where they came from, we talked about my boarding school experience, something I had never done before even though for 7 years I had seen a counsellor prominent with Boarding School Survivors, at the time I just had not been in the place to do so, I regret it now but he was a good counsellor and I think he recognised that it wasn’t the right time for me. We talked about my family, my relations with them and how that affected them. How the combination had led to my crisis of being. The CPN recognised that 7 sessions wasn’t enough but it was the best he could offer, before I left he told me my awareness of my issues was in advance of what the NHS could offer me, at least under current policies, and not in Sussex Partnership Trust (not that there aren’t staff with the skills in the NHS it’s just not policy to treat people long term anymore, which is what I needed. Short term CBT is the new ideology). However in the last session we discussed me reducing my medication and he referred me to a consultant.

On friday I saw that consultant. At first I though he was reacting negatively to my proposal, but as the session progressed I realised he was just covering his arse. I explained how originally, historically, medication was supposed to be temporary whilst other therapies took over it’s just that now with most research following the biological model for all the various reasons, there is no therapy now. He agreed. I told him my view on my situation, he accepted my level of awareness. He agreed to support me in reducng my medication, he even suggested he would like me to come completely off one day. In the meantime I am to take 2mg and 3 mg on alternate days for four weeks. Then reduced to 2mg daily until I feel comfortable reducing it further.

It can be done.

Can you make a living out of madness, out of being mad, not curing it?

Taking into account such a possibility I am currently trying to get a certificate of attendance from my psychiatric unit as evidence of a life skill at prospective interviews.

I had an interesting moment. I was reading up on some theory, Habermas to be precise, and I had one of those moments where a lot of what I’d read previously slotted into place. Not just course work but pleasure reading. That moment where you get the point of not just what you are reading at that moment but the connections with all those other things – to be specific in this instance but not exclusive histories of social/ communal-religious puritan groups such as the Shakers and Weber/ modern thought – that you have read piecemeal in the past because they looked interesting. But of course unless you live in ‘I can be a purely objective scientist’ fantasy land, at least in the social sciences – Habermas again has something to say about that to do with the necessary use of the ordinary language being studied – you sometimes think how it relates to the evolution of your own thought, your beliefs (or you should – the ‘is’ and the ‘ought’). But that was not the breakthrough, it was a breakthrough, a minor one of sorts in my own theoretical preferences, but not the one this post is about.

As I was thinking to myself, ‘now I understand all those things I’ve read’, one of my voices spoke up: ‘You mean, we’ve read.’ At first I had my normal paranoiac/ telepathic moment – that’s someone telepathically linked to me letting me know they’ve read up on this too, stop fucking preaching (a weakness of mine) – but then I realised, no, for the first time, that I was aware of, or rather, or perhaps, the first time I was aware that, my voices were telling me they were a part of me.

Then I looked out of the window and a guy was walking past giving me the evils – did he know I was being so foolish? But no, he was the same guy who had been delivering leaflets while I was walking my son to sleep earlier, he was delivering pizza menus. He put one through my front door. I don’t eat pizza.

[edit] Rereading this I got a voice saying ‘Oh jeez, we’re not’  but was it telling me it was separate or was it the voice’s own terrified realisation that they are a part of me?