Yesterday I gave a talk on recovery from a service-user perspective for the Department of Applied Social Sciences (Social Work) at the university of Brighton. The session was attended by a group of applied mental health practitioners, community psychologists and various others who’d taken the elective this was part of. The response seemed relatively positive which I was glad of as in a sense I am selling both biographical and emotional labour as well as the usual intellectual labour one sells at university (talking about the Autonomists and their affective labour, what of recovery narratives as a form of income? Will talk about this in next post with regard to Chris Kraus) and as such it puts one in quite a vulnerable position, something I do with this blog as well (except I got paid yesterday!)
Anyway here is talk (I haven’t added the timeline as although reasonably safe in the classroom (although not 100%) I ain’t for identitiy theft reasons plastering that much data online -what I’m about to add is dangerous enough with regards to that).
Recovery: A Service User Perspective
I’ve included a timeline (rather long, I am in my early 40’s), partly because I think it is important today to look at certain triggers and so I have written what I take to be important landmarks in my life that have contributed to my breakdowns and recoveries. Many of you will at some point take different histories from your clients, some longer and more detailed, others shorter. Some based on environmental models some on medical ones, most in between. Of course when you do yours you may have more scope to ask specific questions i
n more detail, or perhaps less. I have of course written what is important to me which, on the one hand is subjective to a large extent, but on the other hand seeing as you are here for a service user perspective, the point is precisely that this is my perspective and as such is a narrative that informs who I am, who I have the potential to become (it is a damaging myth to think that ‘free-will’ gives us infinite choice), and how I understand my psychosis and also by dint of that my recovery.
However if you do have questions about the timeline that are provoked by the rest of my talk, please feel free to ask, but if you could please leave them until the end.
So a quick, biography, I was born in London at the very beginning of the seventies. My father was a shopfitter whose family business had done well for itself, a business that had originally started from a barrow in the East End a few generations earlier. He was an insecure, social climber and for some reason after an architect dinner guest took the piss out of his North London semi-, he moved to the commuter belt of Hertfordshire. In hindsight, at least to me, it seemed a reverse move with regard to access to the latest trends, but at least I now have a deep appreciation for JG Ballard.
In the eighties his business did well enough to send me, but not my sister to an exclusive ex-colonial boarding school. However it was at least two classes above my family roots and I was immediately singled out and set upon, and although I stuck the school out I never fitted in, and as such, albeit psychotically, have joined the George Orwells, John Peels and Stephen Frys of the world. And to this day I have to live with the realisation that what had a major factor in sending me mad also gave me the survival skills to survive my madness. I believe Adorno and Horkheimer refer to it as the dialectic of Enlightenment. I still bear the scars to this day. Often when after nearly twenty years of struggling to create a life where I don’t have to rely on benefits and then failing regularly, if I moan (I have voices that say ‘Don’t complain’ to which I reply ‘Well, stop complaining about me complaining then’) about my circumstances, or worse suggest that perhaps we have a duty to resist such a world that punishes such experiences, I am reminded by my voices of my public school, or told that I am privileged, enough of the poor me, hard luck stories. Now I don’t know of many definitions of privilege that include psychosis, but towards those that insist that it does my cruel streak comes out, the bully that bullies the bullies, and I tell the voices.’ The only thing my privilege taught me was how to shit on people and then turn it into a profit. I tried to turn my back on that, but if you want to insist on such inescapable determinisms I can always start now, and I think I’ll start with you…”
Anyway before I scare the hell out of you I’ll continue. At eighteen I left home as fast as my Renault 5 would take me and headed north. I had quite a good time until I screwed up a relationship with a girlfriend at about the same time that I started to experiment with drugs. Although the killer was that the predominantly working class Black Country lads that I’d befriended then went and stuck by me when it seemed clear to me that I had been out of order. Many of them are still good friends today. After the life I’d had it’s hard to explain the contrast between that and my teens, the experience could have been the making of me as a better person, but I blew it, up my nose. And the more I relied on amphetamines for confidence the more my confidence disappeared built as it was on what I considered to be bullshit.
At the same time my parents divorced on the back of a series of my father’s affairs. I tried to get through college but I was a mess, not least my own self-hatred at my own apparent womanising. My sister had also dropped out of university and gone around the world, so when she got back we headed for London with a friend of mine from university who had also dropped out. But it was a disaster I lasted 10 months and headed for Nottingham where some university friends were living what I thought was the high life. It wasn’t, we were all on the dole and headed nowhere. It was the early nineties, and although things were picking up economically, nowhere near the situation the youth of today are facing, I found myself aimless and unemployed. I tried temporary jobs, from warehousing to mushroom picking, before I tried to taxi drive. But I’d also picked up a second taste for recreational pharmaceuticals and after being bullied in one warehouse job I started taking amphetamines for confidence again and before I knew it I was hearing voices. I’d heard a few over the years but just occasionally in particularly paranoid moments. But this time they didn’t stop and they haven’t since. I fled to my grandmother’s in Potters Bar and it was there that my father called in the community health team and I ended up in Barnet General psychiatric unit.
I’m not going to go over the next few years too much. I was put on various medications and finished a degree in sociology; I later got a Princes Trust loan and started a small business from my back room. It suited me as I only had to leave the house to post records, so it was something I could do even on a bad day, but the problem was that I had been dosed up with heavy medication and then left to my own devices, and so I coasted along ok, it was a pleasant enough life, it was the middle of the good times that were to become the housing bubble and I didn’t bother anyone, and no one bothered me. But the voices were still there. Although I ran the business for over four years, after an inheritance I over invested in stock, it was a bad business decision that meant I had to later fold the business, so I decided to go back to university and study an MA.
The years of getting by, despite having a good counsellor meant that when I did exert any pressure on my life, it started to become apparent I wasn’t as well as I’d thought. Driven as I was to make a change in the world I studied Social Development. Surrounded by experienced Aid workers from nearly every continent, but mostly from the developed world, I started to doubt my ability to actually manage to travel half way around the world, considering I had now a good 10 year history of psychosis. But I was enjoying the course and doing well academically. Until that wasmy tutor compared the department I was studying in to my old school.
I changed departments the next week. To the department I now do my PhD in, so not a terrible move, but before I could finish my MA, I did have to go through a breakdown due to the shock. But I changed medication, and finished the MA.
Before I had finished my MA I met my wife, and the next thing I knew I was married with a kid, but previously when I had been writing my Master’s dissertation I had read Michel Foucault’s Discipline and Punish and recognised in his description of military schools and borstals the architecture of my old school, whilst in his description of the famous Panopticon I recognised the architectural equivalent of the experience of my voices (as I write this one of my voices shouted ‘Exactly!). And so I wrote a proposal for a PhD. During this time I also started to go to Hearing Voices groups and the two things combined and made it into the proposal.
As I started to research the recovery movement I started to find out about techniques I had not been aware of in the last 12 years, even after talking to other service users when I’d been doing my voluntary work with mental health charities. Unfortunately, my wife ended up with post natal depression after our first child and I saw through the way they treated my wife and child, the way I’d been treated by my family all this time. And it was awful. But the positive side was that my wife and I realised we both needed to do work together on the emotional skills that we’d inherited, and we started to apply these new techniques to each other.
Before I started my PhD, whilst working fifty hour weeks as a taxi driver, I went to the GP to reduce my medication, I was exhausted with work and family and thought a reduction in dosage would help. It didn’t reduce my exhaustion and I had to stop the taxi driving, but the side effect was that I found my mental health improved. As the recovery work was on the emotional side of mental health difficulties I found that I had more access to these emotions as they had been covered up previously by the medication, and so I was able to make more progress.
With the full knowledge of my GP and psychiatrist I reduced my meds further. Although after the first mg drop, the pattern changed, I would get better for a month or two, then worse as my emotions went haywire, then I would have a several month period where I would improve again, allowing me and my wife to work through our issues before I dropped the next increment. After three years I was medication free, but by then my wife was pregnant again, and we rushed the last 1mg. So when I came off the last 0.5mg, I tried to time it so that I would be over the emotionally haywire period before she was born. But I hadn’t had the full several months working through at 0.5mg and then my daughter was born three weeks early, my son had been born 15 days late and we were expecting her to be too.
What’s more when she was born she was rushed to intensive care as she needed to have breathing support as her nasal passages were closed over due to what would turn out to be a cranio-facial syndrome later diagnosed as Crouzon’s Syndrome.
I had a major breakdown.
What I want to talk about to you today is the recovery I have made over the last year (my daughter’s 1st birthday was last Thursday) and I will be using Repper and Perkins book as a kind of guide.
What is recovery?
Judith put two readings in for this week, one from Repper & Perkins, which I think is classic text on recovery from the statutory sector, it is an indicator of how things could be improved, and from the perspective of a service user there would be a lot of improvement if they were, although it does have its flaws, some of which I will highlight in my talk. The other reading was Coleman which I think is a classic text from the non-statutory sector and it is well worth reading the whole book, don’t take the negative context of the chapter you were given the wrong way, there is much that is positive in the rest of the book, especially for those interested in person-centred planning, but I’m not here to talk about that aspect.
If I can talk about some of the aspects highlighted by Repper and Perkins and relate them to my experience. Some of what I will say is also informed by the work I’ve done in my PhD, I’ve added a bibliography to this, some of which includes the theory I refer to.
• Recovery is not the same as cure
Repper & Perkins state that recovery is simply that ‘the remaining symptoms and problems interfere less with a person’s life’. I’d disagree slightly. There are times when an increase in symptoms accompanies and is the driving force to a breakthrough in one’s recovery journey. An example from my life, for years I thought the more the voices lessened the more I was recovering, then with the birth of my daughter I had a new psychosis of sorts and thought I’d had a ‘relapse’, what had happened was that new events had overtaken my emotional recovery and my ‘symptoms’ were expressing themselves in a new way.
However I had done some work on myself, I’d attended hearing voices groups, taken up meditation and been doing some emotional language work, the stuff I was doing was called ‘non-violent communication’ but I have come across it on other courses under the names compassionate communication and empathic assertion and empathic listening, however that is hardly surprising as the NVC I was doing was developed by a student of Carl Rogers who then took his methods and applied them to conflict resolution in war zones around the world.
I had also become aware of the neuro-science of a guy called Antonio Damasio, who is one of the proponents of the idea of the mammalian brain and the argument that the linguistic part of our brain is a later development and that a large part of our brain is non-linguistic, referring to what Freud and Jung called a century earlier the unconscious, and is where our emotional brain is centred.
I am against the bio-medical model but please do not assume this means a rejection of science. I believe our emotional neural pathways can get severely damaged, but that the brain has plasticity and we can recover or rather forge new neural pathways, these pathways are not fixed and there is no normal functioning of an ideal brain (for reasons of the plasticity of the brain). So for that reason there is no cure only recovery, or even new forging. There are also terms like ‘flourishing’ that are entering the mental health lexicon that could potentially escape the more normalised modes of thinking of the idea of a ‘healthy’ brain. A particularly good book that helped me understand this in the context of my own experience was Sue Gerhardt’s book, ‘Why Love Matters’ which combines modern neuro-science with evidence based work on attachment theory.
Returning to my own experience., I understood I was having difficulties dealing with the stress of my daughter’s hospitalisation and there loads of connotations with regard to what the consequences of my daughter being severely disabled might be, not to mention the shock of witnessing her almost die at birth. It was too much for me, especially as I had been expecting a more emotionally even experience to recover whilst off medication. My voices kicked back in harshly and I had a breakdown, the skills I’d learnt weren’t enough to regulate this experience. And so I returned to taking medication, although it turned out due to the emotional work I had done I didn’t need to go to quite as high a dose as 5 years earlier, although it was still a horrifyingly intense period.
Now this still isn’t the main point with regards functioning, during this period I attended a workshop with Rufus May and discovered Voice Dialogue, unable to find someone to teach me, I bought the books by the Stones, the developers of the method, and even though the books are based on non-psychotic interpersonal therapy, upon reading them my voices immediately took on the aspect of externalised aspects of myself, and I found myself having conversations with voices that had previously been experienced as nasty, punitive people who had it in for me, as aspects of myself. And when that happened they became friendlier and more respectful, most of the time.
The important thing to remember though is that I was still hearing voices, but I now had a different relationship. And I was able at good times to recognise that they were warning me of my anxieties and fears and other issues.
However, and this is important, although this was a sort of Eureka moment, whenever stress got too much, for example going with my daughter to Great Ormond Street the punitive voices would return, it took too much energy to maintain them as aspects of myself, the pathways were so well-worn that I would fall in to a persecutory rut. There was nothing I seemed able to do about it. I still needed support.
So in a way during my worst psychosis I was recovering at the same time. This is far from cure it was an emotional rediscovery.
• Recovery is about growth
Growth to me is about learning about oneself, the classic: “what the hell happened to me?” becoming the basis of a, “So, where do we go now?” Growth is as much about understanding your history as well as understanding the limits and potential to the possibilities of action. Something that is true for everyone.
Now a lot of my voice experience stems from prescriptive labelling, at a certain time in life I found myself on a very different path than the one that had been laid out on me, and each time I had a breakdown, the critical parts of me that I had exorcised to allow me to take this path came back at me trying to protect me, only they didn’t, I had become so vulnerable that they became quite punitive trying to force me back on a path I had rejected, a path that itself had been a flight from what I had perceived as undesirable. Now when something goes wrong in life we have to draw on experience, there are three major ways you learn, experimentally from your own experiences, punitively from those who try to keep you in line, and from observation, watching how others are treated. When you are stumped as to what to do based on your own experimental life, the outside, often called the ‘Other’ by Lacanians, come back at you, trying to teach you how to behave even in the absence of those original influential figures. Of course if that past experience includes trauma and/or abuse that event will have a major effect on you.
Now one of the positive influences a person can have outside of trauma is a positive Other, someone who will affect someone in a particular way that will allow those other parts to heal. In a sense outside of the bureaucratic elements of your jobs, I think this is your role. To be a positive Other. Now most work to be effective has to be of the personal experimental kind, but at times of crisis a positive Other is a useful role someone other than the person affected can play. A classic example from anthropology is the uncle or the shaman who takes the young boy out hunting, and in a sense this is the positive role the modern mental health practitioner can play.
The growth I did, slowly, after the Nottingham breakdown that left me hearing voices permanently was one of rebuilding my life and dreams, the growth I am doing now is about having confidence in myself and even my right to exist, based on my integrity and humanity.
But as a mental health worker, there is a sense where your role is to aid someone struggling to have confidence in doing what they probably are already doing, to grow. The question is in what way will you affect this?
• Recovery is not an outcome or an end-result
The Rethink website distinguishes Clinical Recovery from Personal Recovery describing clinical recovery as an idea that has emerged from the expertise of mental health professionals, and involves getting rid of symptoms, restoring social functioning, and in other ways ‘getting back to normal’, whilst personal recovery is an idea that has emerged from the expertise of people with lived experienced of mental illness. It focuses on the process of building a meaningful life as defined by the person themselves. The Coleman chapter criticises clinical recovery, including more environmental versions that he calls social recovery, but the question is what can you as a mental health worker do, especially if supposedly anything you do by some arguments that is taken from an internal discourse amongst yourselves becomes ‘clinical’ recovery by dint of the fact that it doesn’t come from people with lived experience but from you.
I personally don’t think that attitude is very helpful, but that doesn’t mean that the fact that this divide exists should be dismissed out of hand. Maintaining the divide by maintaining that attitude is what is not helpful, but equally unhelpful is ignoring how it came about. What I want to talk about is the importance of listening, and how this simple technique is the best tool for bridging this divide. A divide that is probably more institutional than personal.
I am aware that I come across as confident to a lot of people, and the best support that I have received from workers in my journey has been those who have seen through that. Of course it may seem obvious that if I come to you with psychosis there’s something wrong, but in my experience that hasn’t always been the case. I breeze into a room, state clearly and succinctly what help I think I need, and the help vanishes. If I know what I need evidently I don’t need it. It is those who have taken the time to listen who have been able to come up with something. Of course the problem that so many workers have spent a lot of time on is wording with me what it is I need, whilst filling out a form that states an outcome that will actually get me the service or funding I need. But the workers who have been able to do that are amongst those who have helped me the most.
An example from recent times was that I was having difficulties getting up to Great Ormond Street, when I was up there my voices would get so vicious from the anxiety I would have to come home, if I stayed home, my voices would get nasty because I felt useless as a father. It all came to a head before one particular hospital visit when both my wife and I got so stressed that in the middle of an argument I grabbed my medication and threw the whole lot down my throat. Suddenly realising the idiotic thing I’d done I phoned the GP, as a consequence she phoned social services to get me assessed by a social worker to get support with the hospital visits. As a result I got some direct payments to pay for support workers to accompany me up to Great Ormond Street.
The fact that when these support workers accompanied me up to Great Ormond Street my voices became considerably reduced, I got to go to the hospital with my daughter and contribute to her welfare, meant the consequences with regard to my recovery were wide ranging.
At the time I was becoming far more isolated, I thought the world was out to get me. The majority of my voices were accusing me of being a whiner and complainer and blaming their abuse of me on my politics, my employment status and my background. We’ll leave out for the moment any immediate suggestions of why that might be. The problem was for whatever reason I was becoming isolated, and the more isolated I became the less able I was to deal with how I felt I could contribute to the world and thus the isolation became self-perpetuating. When I did try to venture out my paranoia and psychosis became so acute that I was unable to interact with the world even when out in it. I remember one of the support workers when up at Great Ormond Street stating it was the easiest job he’s had. As it happens I’ve worked as an advocate and I’ve also experienced attending meetings with people and doing nothing as my very presence gave that person the ability to speak for themselves. And here to that was all that I required.
Afterwards I realised that I needed to do something about my isolation. Of course that was easier said than done. But it was the first step in a series of events that affected my recovery. For example I also realised that just feeling more confident reduced my voices, so whilst at the time it seemed that I had no power, the presence of another allowed me to feel some power. That feeling of self-control then spread throughout the different interactions in my life, it allowed me to bounce back quicker when I did become ill, and it probably contributed to the later moments when I took so much power over my voices that I started to become able to relate them to aspects of myself
• Recovery can and does occur without professional intervention.
I will now give a history lesson of the mental health survivor movement and its effect on the notion of recovery, but I’ll keep it short. The original notion of recovery is historically mixed with the history of the competing discourses of the social hygiene movement and that of the medical discourse surrounding the discovery of lesions. To brandish a brute and rusty sword one can get a rough division that allows the notion of recovery more on the social hygiene side, but it is a crude division. Then intermixed within this is the appearance of a policy of care in the community occurring within a milieu that found the medical model dominant, hence the ubiquity of medication as tool, whilst the moral force for the policy relied on the model inherited from the social hygiene movement. Then with the appearance of care in the community as policy a space opens up that allowed the survivor movement to take the notion of recovery as their own.
Historically we know that there have always been people who have recovered without professional help. In fact as we know people do recover, it is not too illogical to speculate that many people had to have done so before there was such a specified profession. But the notion of recovery that we have available to us today is one that stems largely through three channels: a professional one dominated by psychiatry that has both the notion of recovery that stem from a history that travels through the social hygiene model from Tuke and one that travels through the medical model from Kraeplin (and of course people like Bleuler straddle both models ); a second professional channel that is dominated by social workers, nurses and psychologists that has its roots in the practices in the community that have always existed alongside the psychiatric hothouse that has its history in the asylum and private madhouses. This route I would argue is the one that has historically least used the word ‘recovery’ but is the channel upon whose practice the burden of its modern connotations are being branded; and the third channel is that of the survivors of mental illness themselves.
It was in this space of modern care in the community that the survivors gained not only a voice but a place to organise (this history does go back further but the large part of the evidence we have available only stems post-asylum, of course the true history goes back as far as the mad subject itself) and a realisation that it is the person who recovers who should own the term arose, and as such a practice emerged within the survivor movement that encouraged peer practice of recovery techniques.
However, its own success rates these practices started to get noticed by those who had most contact with these survivors, and that wasn’t the psychiatrists who had their own dominant position to protect, but the second stream of professionals; the psychologists, nurses and social workers. This also was aided with the fact that this stream was most likely to contain ex-service users, and/or members of its profession who had their own experience. This is not to say that psychiatrists don’t have their own statistically normal incidence of mental illness, it’s just that their particular career path is more (although not definitively) likely to preclude late or re-entry.
There are then also institutional reasons why a notion of recovery that had roots in the service user/survivor movement would be taken up by this strata rather than psychiatry, and that of course is that this notion is a practice rather than a pro-(or pre-)scription which is much more easily delivered by this strata.
There are two strong reasons for this uptake, one is governance and the other is crisis intervention.
So that one’s practice is focussed more to the latter than the former it is merely enough to know that people do, often recover without professional help, but it is idiotic to ignore the fact that many don’t. So the question that results from this is when to intervene, when to leave well alone and, one technique sometimes forgotten, when just to be present.
So again referring to my journey, there are two areas that hang heavy in my experience, and I cannot do more than relate them, as truth be told, I haven’t resolved them myself yet. One of the reasons I am here is that I am one of those truly grateful for the help I have had from professionals over the years, but there are areas where I am not happy.
One of these areas is my fallow years between 1997 and 2007. Although this is with hindsight, I do feel I was left to fester to an extent. It is the period where I feel due to my stability, my medication maintained me. Now as far as governance is concerned I am not so paranoid to think there was ever any deliberance here, but I would argue that that a factor in this period was the fact that as far as outcome measures go, the fact that I was stable, attempting to maintain stable employment, not using resources and of course not causing any trouble. But as far as recovery was concerned I was the living dead.
What I could have done with was some encouragement and some signposting, because despite the positive help I have got from professionals, and I’m going to get overtly political here when I say that in my personal experience there is an inverse relationship between the pay of the professional and the help I’ve received. That is the less they’ve been paid the more help they have provided me. But despite this help, I have done a large part of the recovery myself. But I had to look this knowledge up myself, to find a large part it took me to do a PhD. But when I did find it, it changed my life. Now, finding this route to my recovery didn’t stop me using the help of professionals, and in a sense finding these techniques elicited greater support, but there’s a part of me, that looking back to that part of me that I feel was wasted, and I don’t mean what I did with my life, I ran a record shop and completed a PhD, but as far as the needless suffering I went through, that I put myself through albeit unknowingly, there’s a part of me that still thinks – “What if someone had been there to guide me that bit better”? Not fix me, not heal me, cure me, not make me better externally but to guide me, to accompany me. And yes I think it is very pertinent that my recovery came about not just from discovering new techniques, but meeting someone who recognised me and gave me the time of day. For me that was my wife, but for many people that possibility often seems too far away.
So although people do recover on their own what can the mental health practitioner provide those who don’t?
• A recovery is not limited to a particular theory about the nature and causes of mental health problems.
This is an interesting statement by Repper and Perkins, not because it is undoubtedly true, but because it is only true for those intervening. I would argue that it is very important for the person doing the recovering to have a theory. Why the statement is important is that this theory is the person recovering’s own. This doesn’t mean you aren’t allowed your own, but if I, as a recovering person may intervene in your theory, and no matter how practiced based you are you will have your own theory, I would suggest: An open-minded attitude to a client’s belief system is more helpful more of the time than not. Of course you may find that you can’t help judging someone’s belief system as particularly self-destructive, and to be frank, objectively it may well be, or may well seem to be, but say, to take a theoretical example, what if that person’s difficult belief system is the product of a particularly long history of being aggressively discounted and not taken seriously. How is dismissing their view going to help them?
I mean I would be the first to admit that one of the reasons my personal route to recovery has involved studying to a PhD is that I really struggled with my feelings of not being taken seriously. I’m glad that I’m aware of this drive because hopefully it means I will have the maturity to temper what is a very emotive subject for me, but I’d be a fool to deny that it contributes to my drive, and that until I took on board that reality as part of my experience my recovery was stunted.
A large part of recovery is fighting for a theory of who you are, and for what you believe to be taken seriously within a whole milieu of alternative theories about what constitutes you, many of which are very powerful and are there to control you. But it’s not about beating them, although I personally have taken them on, I would argue it is about navigating them as honestly and with as much integrity and autonomy as possible.
• Recovery is not specific to people with mental health problems
The example that Repper and Perkins use is that we can all suffer loss, or some form of trauma that we need to recover from. And this argument despite the earlier statement is based on the theory that trauma is a major factor in mental health. Whether there is an originary biological cause; genetic, congenital or bioaccumulated that leads some people to be more susceptible or less resilient, or whether the trauma leads to mental health problems through the way it is reacted to socially, environmentally and/ or psychologically (and as I am looking at linguistically – thus embodying all three), there is evidence that trauma is a major factor in mental health but as the research in resilience is showing not all people who suffer trauma develop mental health problems and not all people with mental health problems have any identifiable trauma, so it is a theory that has a strong correlation without being one of definitive cause (thus we are able to have these two seemingly contradictory statements).
I would also argue that recovery is a part of a larger quest for autonomy, one that we all strive for and few achieve, mental health problem or not. Including those supposedly recovered.
• Recovery is about taking back control over one’s life
Of course such a statement puts into place the statement I made earlier about autonomy. But if we look again at the statement there is a serious implication in the wording: that control has been taken away in the first instance.
And a question that needs to be held in working with people who have had control taken away is how does one do that without further undermining that loss of control.
I am a firm believer that you can’t give someone control, but you can take it away. You can put someone in a position where we might think that person must surely take control or else they’ll do themselves damage, but how do you know that person will take control? How do you know that they won’t just look at the reigns you’ve given them and go ‘What are these’ and shoot straight over the cliff? For someone to take control they have to feel comfortable doing so, and it’s not just about feelings of inadequacy; I know my illness has a lot to do with a a self-destructive drive. When I was at school I was in the RAF corps and I had the opportunity to go and stay on an army base in Cyprus. The soldiers there treated us well and I had a lot of opportunities, flying, shooting everything from SLRs to GPMGs, priming hand grenades and plastic explosive. But one thing I remember was being taken out to sea by some Marines, we were on twin engine, steel bottomed, inflatable assault craft, these were powerful boats and they gave us the opportunity to drive them. There I was steering wheel in one hand, thrust sticks in the other. It was choppy weather and it didn’t take me long to discover that if I powered into a wave and spun the steering wheel at the same time I could flip the boat sideways. Sort of the way you skid a bike. It was great fun but it didn’t take long for one of the Marine’s to take the controls back off me accusing me of being crazy. For a long time that was a mark of manhood for me to have been called ‘crazy’ and scared the hell out of a marine, but the truth is that would be pretty much how I dealt with my life on leaving school. There are those with mental health problems who are treated as if they couldn’t ever have been any other way, there are others like myself, when a history is taken who know full well how to control a steering wheel, of whom it is too often suggested that we have created a hell of our own making. The question is never asked why we do it.
A family story I have had to fight hard was that I chose my school. Nobody questions that I was bullied, that it was tough, but the implication is that still it gave me a good background; if I hadn’t gone there I wouldn’t have possibly recovered as well. But the question of control or autonomy that was ignored, one of the problems that was overlooked as to why I can study a PhD yet still hear terrible persecutory voices, suffer paranoia and low self-worth and self-hatred, constantly collapse back into psychosis at every stressful or traumatic turn or event is that because of a small family story that at the age of 12 I chose my school, the school that I would have be bullied at 24 hours a day, seven days a week, trapped in a disciplinary architecture that I had to utilise as a form of defence to escape my tormentors, I became responsible for the abuse I received at such a young age.
I’m telling you this in the section on control because, control is not just about having confidence to act on the world, but it is about knowing one’s limits and understanding the consequences of these actions. In a word it is about re-enabling ethics. And as you will be dealing with those who have been victimised by various dominating, arbitrary and vicarious, proscribed moralities, be damn sure of your own ethics too.
• Recovery is not a linear process
Well as Einstein said ‘the definition of an idiot is someone who keeps repeating the same thing expecting a different result each time’. It’s a paraphrase of basic scientific exploration. But it is also a wonderful analogy for being stuck in a rut and feeling like a complete idiot for not being able to make a change.
Repper and Perkins talk of relapse, but there are also new breakdowns, they can be a new psychosis and can actually be part of the recovery process. If we imagine a recovery as a road, if we get in a rut, or a plateau, a relapse might be that we have tried to get out of the rut and slipped back down again, or the rut has taken us unavoidably to a pothole. But a new psychosis implies coming out of the rut, it might be that leaving the rut you veered into a ditch, or that a rock knocked you out of the rut into a pothole, or even you found your way out of the rut, picked up speed and careered off the highway. Whichever way it is when you recover from it you will be out of the rut and on a new path.
There’s also something to be said for second, third or more psychoses. You’ve been there before; if you got yourself out of the last rut you have the skills to get out.
However that doesn’t mean that I recommend new psychoses as a method of recovery, sometimes the ditch is too deep, the pothole breaks a wheel, careering off the swerve in the bend can kill you. It is far better if you get out of a rut to then drive sensibly.
• Everyone’s recovery journey is deeply personal. There are no ‘rules’ of recovery, no formula for success.
I hope mine has indicated this somewhat. And I hope you have got an idea from the comparison with Repper and Perkins guidelines. As guidelines go hopefully your own practice ethics along with that of the sectors you work in will help you create your own good practice, but please take the time to frequently hear the recovery stories of others throughout your career.
From what are people recovering?
• Loss of a sense of self
One of the interesting things I found about my illness was how I had to learn about what I’d denied to myself. That may seem a strange thing to say, but if you think about the idea of denial, it is in the nature of the thing that you are not going to be aware of what it is you are denying.
When I first became ill, I went through that classic dialectic, ‘Wow, so this is what is WRONG with me’. And I thought I could recover on that basis. Although I was one of those who was told ‘Here are some pills, sign on, your life is over’. In all truthfulness I didn’t bear it much mind and within a year of coming out of hospital I was at university studying a degree in Sociology.
However I was in denial about how bad my psychosis was. After the three years I only achieved a 2:2 despite regular high 2:1, low 1st written work due to the fact that I couldn’t sit long enough in an examination room to get more than an average just above 40% as my voices were too strong. To top it all I shot myself in the foot by refusing to disclose my illness when applying so would have been refused any support had my stubborn pride allowed me to request it. (When I later applied for my Masters I made a full disclosure and thanks to that and choosing a course marked purely on written work I got a Merit).
But at the point when I started my BA, fresh out of the psychiatric unit I was very into labelling myself according to the medical model, I was a good mentally ill subject and could quote my positive and negative symptoms. There’s a joke that there are people called ‘normopaths’, people so desperate to be normal it becomes pathological. Of course the joke is that the idea that there is such a thing as normality is so nebulous that these mythical people are for ever chasing ghosts, and therein lays the pathology. But if there is the idea of the normopath, then I was most definitely a pathonorm, someone who attempts to fit into the normal distribution of their particular pathology.
And clinging to this label meant that I didn’t deal with how I got there. Although I evidently thought something was up as my BA dissertation was on labelling theory, and the differing outcomes between first and third world recovery rates (for the record the third world came out with the superior recovery rates).
So in a way it was only later that I ended up taking on that sense of loss of self. And although I am here suggesting that an adherence to the medical model delayed my recovery, I think it is important to look past this and look at why I clung to it for as long as I did. Looking back with the observational and experiential skills of another 12 or so years, I don’t I had dealt with those aspects of me that I had denied but then were coming back as voices. I had effectively excluded parts of myself that didn’t fit my conception of who I should be, yet they were a part of me and so were driving me unconsciously. Yet at the same time I was drawn to certain forms of explanation because I was denying my right to become who I could be.
Let me explain, I know that sounds complicated. When I left school I did anything to be other than who that legacy suggested I should be. There’s nothing wrong with that, quite frankly it was a vile institution, however in expurgating any part of me that might betray that heritage I was denying the massive impact going through that ordeal had had on me and so those repressed parts returned to oppress me. When my social development tutor implied that I after years of psychosis was still following the path laid out by a school I hated it was a massive turning point in my life. Had I a stronger emotional maturity I may have realised that I could quite legitimately use those parts to formulate my life in another direction but my loathing for certain parts of my history meant I couldn’t do it. What’s more as I have finally realised that I was lacking in these areas, matured and what’s more become a parent myself I have come to understand that this is an area that my own parents were having difficulties with themselves, and so it was an area that I realised I would have to teach myself. And it was only this way that I could understand not only who I was and who I had been, but most importantly who I could become.
• Loss of Power
For a long time I denied myself any right to power. Every turn I took was to try to exist without exercising any power over others. So I didn’t think I was really suffering from this but then two things happened. I read a philosopher called Michel Foucault and through his later writings learnt that power cannot be denied, it flows and exists everywhere, but that just because one acknowledges power does not mean one need use it to dominate others, in fact to prevent oneself doing so unconsciously it is necessary to be aware of how power operates. The other thing was that I reached my forties, and all those former peers whom I had rejected also reached theirs, and many of them were in banking and politics. Then when there was an election and my former peers who I despised started to shit on my new peers towards whom I had grown an admiring respect, I first grew furious and then I suddenly felt very powerless.
Whilst trying to do something about my situation, my daughter was born with a disability, and my psychosis kicked back in warning me of the limits of my ability to affect the world. It was a brutish wake up call, but fortunately it was short and I was able to recover with a view to seeing beyond what seemed to be a totalitarian Other.
• Loss of meaning
If I was to look back at these four values that Repper and Perkins identify, then loss of meaning would probably be one of the one’s I most identify with the trigger for the major breakdown that left me hearing voices permanently (and here I would like to separate the idea of a trigger from the idea of cause). Although at the point that I had that breakdown I had started the occasional temporary work, I was about to get a taxi licence and had managed to apply to return to university to attempt my degree again, in many ways it was a push too late. This was my Dunkirk, but if my superego was my Nazi, then this time in a Philip K Dick moment, the Nazis crossed the channel, broke through my consciousness and my ego would then be forced to operate as a resistance fighter within my own self. It is therefore unsurprising that I would later look into emotional language, and even ideas of shamanism, to try to secure an alliance with my id, an id that so often scuppered my ego’s plans and allowed my superego to violently police me.
But although Repper and Perkins identify roles as the problem, I had no problem searching for roles. Throughout my life I have volunteered, run a business, taken studentship to a doctorate, worked full time, married, become a father. My ability to find roles was not a problem. The idea that we take meaning from our roles is a very superficial concept; meaning is to do with much deeper issues of identity and self-expression. As with Coleman’s criticism of social recovery, focusing on roles is perhaps where recovery gets most co-opted by governance and at its worst leads to the criticisms of workfare where the assumption is that recovery is directly related to getting a job. It is the social and economic equivalent of CBT, a sticking plaster.
• Loss of hope
Hope is a powerful force, and it most definitely has played a major part in my recovery, and I know this is not true for everybody when I say this, but for me hope has always been there.
But that doesn’t mean one should focus directly on restoring it. I suppose I’m going against a utilitarian concept here, but just like happiness I believe it should be a product of one’s practice rather than the ultimate end for recovery.
Of all people the person that helped me put the bit I’m about to explain into perspective best was a guy called Steve Biddulph, an Australian parenting therapist. He suggested that although there are many different feelings the basic ones are fear, grief, anger and joy or happiness. They are like the primary colours of emotions, the blue, red and yellow that all other emotions are made of. But the way to get happiness is not to focus on happiness itself, but rather to be able to deal comfortably with the others. Fear, slows you down and helps you think in stressful circumstances, anger helps you protect yourself and stop yourself being shat on and grief helps heal hurt and allows you to move on. Problems occur when these emotions are blocked from healthy expression. If you are not comfortable with your right to feel these emotions, happiness will remain an elusive concept no matter how the positivity champions try to force your productivity up.
And the same goes for hope, work on those things that bolster hope and it will appear, rather than try to grasp it. You can’t learn for yourself without learning from your mistakes, no matter how much you observe, repeat, copy and practice. And if you can’t admit you’ve made a mistake you can’t learn from it. That’s why the ability to say sorry and mean it is so important, rather than that passive-aggressive ‘sorry’ so many, including myself, seem to use in order to ward off any suggestion of real responsibility. And if we don’t allow ourselves grief, anger and fear, knowing what to say sorry for, whose mistake it really was will also be elusive and then so will hope and happiness.
What might recovery involve
• Restoring hope
Repper and Perkins suggest the four main tools for restoring hope
1. Experiencing success
I recognise this is something that is important for a lot of people, but I’m slightly dubious of it other than in its relation to its importance in societal values, as underlying this are more important values of acceptance, relationships and recognition. I think it is far more important to focus on why, if people feel they are failures, a judgement I believe is often far more subjective than those who judge themselves view it, people struggle to learn from it.
For me the worst way to improve one’s confidence is to compare oneself with others. In the same way there is an argumentative fallacy well known in philosophy where one claims intellectual authority based on one’s awards. As if one was using the intellect that supposedly earned one those awards then one wouldn’t have need for recourse to the award in the first place and as such brings the award into question. I believe the same goes for the importance of success and roles.
If anything learn to define your own success it’s a far better way of experiencing it.
2. Taking control
For me, as someone who has a strong drive, it’s not a problem. What my journey has been about has been protecting myself against those who try to take it away. As I said earlier I don’t believe, from my own experience but also from those who I have worked with and those I have had close personal relationships with, you can give someone control. So if the only person who gives you control is you, then when you don’t feel in control, what are the barriers? Are they within you, or are they structural and external? Nobody will win a Nobel Prize for suggesting it’s a bit of both. But even if our own inner control thieves are a major problem, they come, I believe, from experience; either from being punished, or sometimes inappropriately rewarded, for behaviour, and from observing how others are treated when they behave in particular ways. In fact I would say the latter observational tendency is far more effective in controlling our own behaviour than the way we are treated directly.
It took me a long time to realise that, and to therefore be conscious of what drove me and why I often felt that I had no right to take control because I was supposedly so damaging when I did.
3. Finding meaning
Although as you can imagine I think finding meaning is a very important part of recovery, it most definitely has been for me. I believe it is not a goal. You don’t find meaning and suddenly, boom you have an identity and you have reached the holy grail of recovery. As the past forty oh so years of identity theory have shown identity and meaning are an ever changing, constantly contested field. To sell someone meaning as an achievable object is to do someone a disservice. As so many fields of occupation that involve meaning from religion to politics to the arts have shown, meaning comes from the search for it, not from the having of it. It is not a commodity.
In that sense, recovery is a practice, a practice used by those who have suffered mental illness as a vital form of life, and as such as I have said before it is an ethic.
4. Maintaining relationships
However if you think all I have said today is a load of rubbish, please take this one thing away with you: everything that has affected my mental health, be it in the form of a breakdown or a recovery, has involved my relationship with others. Although events may trigger breakdowns, certain realisations or epiphanies, or changes in circumstances, may kick start my recoveries, how bad my breakdown is, or how good my recovery is has been underpinned by the quality of my relationships at the time. Over success, control or meaning, relationships out-trump them all. Isolation makes it all harder. This is not about comparison or competition; it is about being a member of the human race and feeling part of it. No matter how successful you are, how in control you are, and although these two are probably possible on your own, none of it has meaning unless your relationships are strong.
And for the same reason it is relationships that can bring you down. And referring to the importance of hope, as a by-product of everything else, if you have no hope in the possibility of building a relationship, you have no hope full stop. And as this is a session on service user experience for you, a group of mental health practitioners, I cannot think of a more important role for you to play.
Bartlett, P. & Wright, D. (eds.) (1999) Outside The Walls Of The Asylum, Athlone Press
Blackman, L. (2001) Hearing Voices, Free Association Press
Coleman, R. (2011) Recovery: An Alien Concept, P&P Press
Crossley, N. (2006) Contesting Psychiatry, Routledge
Porter, R. (2002) Madness: A Brief History, Oxford University Press
Repper, J. & Perkins R. (2003) Social Inclusion And Recovery, Bailliere Tindall
Romme, M & Escher, S. (1993) Accepting Voices , Mind Publications
Rosenberg, M. (2003) Non-Violent Communication, Puddle Dancer Press
Scull, Andrew (1984) Decarceration, Polity
Stone, H. & Stone, S. (1989) Embracing Ourselves: The Voice Dialogue Manual, New World Library
Stone, H. & Stone, S. (1993) Embracing Your Inner Critic, New World Library
Survivor History Group – Mental Health and Survivors Movements – http://studymore.org.uk/mpu.htm
Further Reading (Recovery)
O’ Donoghue, J. (2009) Sectioned
Romme et al. (2009) Living with Voices
Further Reading (Mental Health History)
Bornat, J et al. (1993) Community Care: A Reader, Macmillan Press
Foucault, M. (2009) History of Madness, Routledge
Jones, K. (1988) Experience in Mental Health, Sage Publications
Further Reading (NeuroScience & Psychology)
Bentall, R. (2009) Doctoring The Mind, Penguin
Bracken P. & Thomas, P. (2005) Postpsychiatry: Mental Health in a Postmodern World
Damasio, A. (1994) Descartes Error, Penguin
Dennett, D. (1991) Consciousness Explained, Penguin
Lewontin, R., Rose, S. & Kamin, L. (1984) Not In Our Genes, Pantheon
Rose, S (ed) (1999) From Brains To Consciousness, Penguin
Thomas, P. (1997) The Dialectics of Schizophrenia
Further Reading (Social Theory)
Adorno, T. & Horkheimer, M. (1979) The Dialectic of the Enlightenment, Verso Editions
Berardi, F (2009) The Soul At Work: From Alienation to Autonomy, Semiotext(e)
Crossley, N. (2002) Making Sense of Social Movements, Open University Press
Foucault, M. (1991) Discipline and Punish, Penguin Press
Hobbes, T. (1962) Leviathan, Collier Books
Honneth, A. (1995) The Struggle For Recognition, Polity
Miller, P. & Rose, N. (2008) Governing The Present, Polity