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They never imposed a diagnosis on me, though they could have

“You’re basically good,” said Magrat. “The good are innocent and create justice. The bad are guilty, which is why they invent mercy.”

Witches Abroad by Terry Pratchett

One of the good things about Twitter is that you can have conversations which make you think. I’m not an expert on the debates around diagnosis, although I am well informed. Certainly a blog post cannot do it justice. Try following Drop the Disorder on Facebook or Twitter (@dropthedisorder) to inform yourself even more. You don’t have to agree, just entertain alternative ideas about how NHS and mainstream services make sense of distress. Just to be clear, if you believe in your personal diagnosis and it helps you, I am just happy that you find it useful.

A reason a Tweep gave for trusting the service she was engaged with was something like, ‘They never imposed another diagnosis on me, even though I am sure they could have.’ This is a good thing and a one very valid reason why she has every right to trust and value her care team. There is evidence is that services do add diagnosic labels- and that when services do start piling on a lot of labels they may have lost any understanding of that person’s needs. This leads the service to fail to provide help.

My view is that the labels I have received have been meaningless and useless […] Calling it autism or ASD, ADHD, schizoid personality disorder, dysthymia or anything else has not led to any clinical utility, quite the reverse […] Each person I have seen has adhered to their little hobby horse; my interests, needs and preferences have been ignored. In each instance no one has done a follow-up and no one seemed interested in how I got on. Brian McCabe

Furthermore, psychological research backs up these views, suggesting that psychiatric diagnosis in and of itself can be a distraction from interventions that might help.

The findings in these two research studies show that medical labels can be an obstacle not only to the treatment process and outcome, but can also be problematic to how the individual being labelled perceives him or herself as a person. The label is “sticky” and stigmatising, hard to remove and is unlikely to be helpful to the individual’s understanding of {their} mental health problem.” BT UK News online 18-08-2015

Though of course, the easy story for the service in that sitution seems to be that the person is so complex and impossible to understand that it is their own fault that there are bad outcomes- though, given the evidence that diagnosis itself can cause complexities, that would be an unscientific (and an unethical, blaming and professionally abusive) conclusion.

The picture is of course nuanced and some diagnosis seem to be more easily understood as a straightforward description of a difficulty – eating disorders for example and perhaps depression or anxiety. Other labels seem to imply a greater sense of pathology within the person such as ‘personality disorder’ or ‘schizophrenia’. Someone messaged me to say that for personality disorder the problem with the label is profound, ‘it is exactly the core of the person, the very essence of who they are, that is labelled as disordered. It is devastating to people who have often survived what many have not. It not only negates their resilience and survival, but marks them out for an often shocking degree of abuse and dehumanisation within an already paternalistic system‘. All diagnosis are not created equal. Diagnosis can be seen as a ‘sorting hat’, primarily about moral and social judgements- bad? sad? mad?. After all, if there was a disease process there would be an objective test for it- like in other well-established and understood diseases, syndromes or illnesses.

Importantly, this means that some labels seem to kill hope as soon as they are applied. These labels do harm in and of themselves. Someone messaged me that as soon as diagnosis of personality disorder is given, ‘the damage has already been done as it relates to someone’s core identity and sense of self‘. As diagnosis is claimed to be helpful, that level of harm seems deeply unethical. In medical ethics the very process of labelling someone could therefore be considered to violate the principle of Nonmaleficence – that the practitioner must not cause any unnecessary harm to the patient. There are other ethical principles in medicine, such as Beneficence and Justice which diagnosis seems to violate too. I would be interested in having conversations about these ideas to extend and inform my thinking. I have noticed that these underpinning values and principles are not often discussed by Doctors- they seem to rely on guidance which tends to be more technical and procedural, which focusses on particular situations. Interestingly is it easier to find information on Dentists talking about these underlying values and principles than Doctors… and I have found nothing by Psychiatrists. There is a good argument that if practitioners continually return to and discuss these underpining principles it helps them to avoid behaving in professionally abusive ways. I think that might be another blog post too. I think I will call it ‘Society urgently needs to talk about Psychiatric ethics‘.

They never imposed a diagnosis on me, although they could have‘ highlighted where I have entirely different standards to many people. In my view ;

– diagnosis is subjective;

– diagnosis is as way to re-story someone’s way of making sense of themselves;

– diagnosis removes the link between life events, the person’s experience and their distress/ sense of self-in-the-world;

-there is no evidence for an underlying disease process (but biomedically orientated people still have a lot of hope for one);

– diagnosis is voted into existence by (mainly) rich, white, men;

-diagnosis upholds a capitalist, western view of the world often at the expense of people who are not white and European;

-diagnosis does not lead to either medication or therapeutic interventions that work in a specific way for that difficulty;

-diagnosis overestimates the impact of the biological level and underestimates the impact of social and psychological factors;

-diagnosis is limited and contested; and

-diagnosis can do harm in and of itself.

For me, this can only mean that although some people find it helpful at times, there can be no ethical way for professionals to use psychiatric diagnostic categories.

However, there seem to be lots of practical or social reasons for diagnosis. Nevertheless, alternatives, such as formulation or straightforward problem descriptions could provide more acceptable alternatives which do not do the same harm and which have fewer of the problems associated with diagnosis. These approaches could meet the need for people to be able to access benefits. They also provide frameworks for people to negotiate the complex tension between blame and support which often surrounds mental distress or altered states. I think these approaches do have problems though, but that is (yet) another blog post.

However, currently diagnosis it is the dominant way of looking at the world. It is so popular at the moment that is is impossible to avoid if you are involved with services. Even if Mental Health Services don’t tell you that you have a diagnosistic label (or labels) by the way, staff have told me that you will have one. The computer system requires it. Some people find out later that they have been labelled in ways they didn’t know about and were surprised by. This might be general or it might only be in one NHS Trust. I don’t know. I did note the strange passive voice when the worker was talking, as though a small diagnosis fairy creeps in against everyone’s will, and by waving its diagnosis wand imposes the label irrefutabley and mysteriously. When we use language to refuse to acknowledge that people take actions which result in outcomes, alarm bells ring for me. The passive voice hides a multitude of sins. I don’t believe in the mysterious case of ‘The Computer says -yes?’. It also strikes me that when there is such a lack of transparency (which is arguably against the principles of patient autonomy, non-maleficience, justice & beneficience, by the way), it might be incredibly hard for a patient/client to be sure that their service has not imposed a diagnosis on them. The system has the power to define the person through diagnosis and as there is no way to opt out of this process the person loses the right to define themselves. Silence, or compliance, or attempts to please this system will not protect you. However, the system might be merciful. It might define you in a way you agree with…or not tell you how it sees you.

The Tweep felt safe and that she was getting a ‘good enough’ service that she valued. That is a good thing. However, the fundamental difference between me and that Tweep is that she was satisfied with mercy. I am only interested in a Mental Health System that relates to the people it serves- which is potentially all of us- with justice.

References

A Prescription for Psychiatry: Why we need a Whole new Approach to Mental Health and Wellbeing by Peter Kinderman

A Straight Talking Introduction to Psychiatric Diagnosis by Lucy Johnstone

Interesting is under-rated

I believe you find life such a problem because you think there are good people and bad people. You’re wrong, of course. There are, always and only, the bad people, but some of them are on opposite sides.

Guards! Guards! by Terry Pratchett

I am always fascinated by the pervasiveness of the concept of good/bad and right/ wrong. It permeates so much of our society, turning up in cultural references from the bible, throughout our great works of literature to popular storylines for Hollywood movies. It saturates our television, our magazines, our conversations about politics and about one another. I have lots of objections to it, mainly that it’s quite boring as it collapses many stories into one easy story that’s told over and over again. Good can feel like an imperative that we see ourselves as simple and static rather than complex and changing.

Good and evil also seem to be very closely related to the idea of ‘might is right’. Historically, conflicts were sorted out by ‘trial by combat…’., ensuring that power stayed with the people who had it already. The concept is so popular because it’s extremely effective at resisting any change.  I think societies’ lack the imagination at any given point in time to see past the powerlessness, confusion and discomfort change brings to a better possible future. When ‘Good’ and ‘Bad’ are so closely related to concepts of power and concepts of violent struggle, what is defined as good gets closely tied to what is counted as familiar and in line with normal expectations. Violence is still considered legitimate if the right people use it- feminism and #black lives matter are testaments to how true this is, as well as how thoroughly the violence of life as normal is disavowed. Normal and neutral are not the same things; normal is loaded with issues of power. The idea of Good and Evil so easily becomes a form of social control.

Good and Bad seem to me to be even more troublesome when we apply them to experiences which are central to human life; love, attachment, loss, change, trauma, growth, pain…. these are experiences that none of us can avoid in our lives and which both form us and transform us. In such situations of extreme intensity and confusion, people struggle against powerful emotional forces to keep an emotional  connection. Finding ways to live with and alongside such pain, staying connected without becoming blaming or punitive, is an act of commitment. It is not possible to try to do it honestly without hurting or being hurt, without at times stepping into another’s expectation that you might harm them, or at times, finding the pain so unbearable that you hurt too much to relate well. Some forms of emotional pain are so raw and bring such an intensity of vulnerability that the matching level of clear-sightedness and integrity does not seem conceivable. For me, the reality is that when people are trying to relate one another around pain and loss it may not always be possible for any of us to know if we are doing harm or not. At such times it does not even seem to be possible to know what your own intentions or motivations are. When people are in the middle of the imploding of meaning which is trauma, when the rescuing force are entwined with the ones that caused the harm, what does good or evil mean? Certainly in some situations it seems inhuman for any of us to keep up the intensity of trustworthiness for the length of time that is needed for healing to happen. 

Around traumatic experiences, it becomes impossible, at any point in time, to tell what is going, on or see clearly, nothing seems to ease the pain and it is not possible to know if the relationship is helping, hindering or harming. In such circumstances, trustworthiness in the relationship can only make sense in terms of carrying on with an expectations of making mistakes and feeling pain when those breaks in the relationship happen in the hope that the breaks can be mended. If we see things in terms of good or bad how can it be possible to carry on making a way through confusion and distortions rather than giving up at each crisis point?

When we say things are good, we mean lots of things but often implicit in it is the idea of normal, familiar, safe. Safety in the context of the difficulties of life and relationships feels to me like a stale dead-end.  People seem to like to categorise roles around trauma and loss as worker, carer, patient or service user. I like learner, doer, teacher as it disrupts the easy stories and easy assumptions we can make. Wherever I have placed myself in the ways people can relate to each other around trauma I have found,

  • if staying where you are feels too difficult and dangerous
  • if doing something different feels unbearably controversial
  • if developing in one direction or another feels overwhelmingly painful
  • if others feedback can do nothing to help because the horizons of your inner world growing or shrinking cannot be measured by other people
  • if most things feel difficult, or frightening, or bad;

the concepts of good or bad are spinning compasses not a guide. It is not possible to make a good decision, because life itself is so painful and uncertain. There is no way to go forward or stay the same that is less painful or without risk. A bad decision remains possible, of course, but making a bad decisions delibarately makes no sense either.

In such spaces I have found thinking about what is interesting useful. Interesting:

  • seems to offer hope-  why give up if things are interesting?
  • seems to offer choice and power- you can learn to notice where your attention is going, what you find interesting and make some choices around that.
  • help with a sense of progress and direction- questions like what is interesting right now? How come? How has it changed? reveal how you are going somewhere, even if it is not where you thought you would go.

Interesting means that it is possible that something new might happen, though perhaps this is why I also like the idea of sensible…

I have found that being interested in the problem feels less painful than anything else. Of course, interesting doesn’t mean safe and it doesn’t mean there will be a resolution. There are no guarantees and life is a daring leap towards the future, or it’s nothing at all. 

 

 

 

It’s not why we trained

It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone’s fault. If it was us, what did that make Me? After all, I’m one of Us. I must be. I’ve certainly never thought of myself as one of Them. No- one ever thinks of themselves as one of Them. We’re always one of Us. It’s Them that do the bad things.

Jingo by Terry Pratchett

There are lots of ways of thinking about organisational culture and organisational change. One I like is called ‘Appreciative Enquiry’. Like all ideas it is useful in some ways and limited in others, so I am not going to go into too much detail here.

Briefly Appreciative enquiry sees organisations as a shapeless organism in a constant state of development. The system constantly shapes and adapts itself to its environment. The people form the system, and influence the nature of the organisation particularly through their behaviour and through the language they use. This means that the culture of an organisation or a profession becomes something that is constructed by the people who are part of that organisation in the course of their conversation.

One idea from this school of thought is if the system or culture of an organisation or a profession exists, then something is working and something is giving, preserving, nurturing and encouraging the life of the system. This seems to me to be a healthy way to look at developing human systems.

However, on Twitter anyway, I don’t really get those stories about mental health. Mostly because a lot of people feel a lot of things are not working well. This means that conversations most usually go:

A valid criticism of mental health practice, is followed by:

“It’s not why we trained” or “Think of it from my point of view” from someone working in the system, which is then followed by:

  • A list of out of ‘out of our power’ organisational constraints that might make the professional behave that way, or
  • A list of the ways that the professional might be thinking that makes them behave that way

This moves us towards a way of thinking called Constraint Analysis. In this way of thinking, it is possible to ask questions to work out which set of limitations are causing constraints, which mean that the system is not as able to deliver the things it might want to. This can also be a useful way of looking at organisations.

It might be quite interesting for me to play around with these questions on Twitter and see what happens to Mental Health Professionals when they get asked organisational system level questions!

It’s just that there are other ways of thinking about the language used and the effects that that language has in a social context. If we think about mental health systems as being strongly bound to systems of power and oppression, both historically and right now, then thinking that came out of civil rights movements is relevant and interesting too. It is important here that anyone who’s used these linguistic moves takes a step back, and gets ready to think about the impact of the discursive moves they make and where they learnt it. It is never easy to look at your place in a system that may not use power wisely and even harder to look at your place in a system that indeed may not be even designed to use the power it has to support and help the people it claims to support and help. I guess “thinking into” the system and your role in it is particularly hard if you are a professional that really wants to help and believes in that role wholeheartedly. So, if you are reading this my request is that you try and disconnect things you say from repeated patterns of interaction over time and across different people. After all, it is likely that your professional culture taught you to say and see things that way.

The above examples could be seen as a tactic of misdirection that deflects attention away from complaints about the abuse and wrongdoing of those in power and towards a different topic that does not challenge those interests. This is called derailment.

There is a pretty good argument that when mental health professionals use this when they are talking to people who are criticising the system in which they have a position of (relative) privilege they are doing this to unconsciously uphold practices of institutionalised power and oppression. Perhaps discussions of why things aren’t working well are not about you if you are a mental health professional, perhaps people are commenting on or talking about a set of power relations. Personally, I find the “Think of it from my point of view” response particularly unpleasant, as it inverts the power dynamic of care. People who are looking for help after all may not feel that they have the right to be looked after well, or may feel (or have been told) that they are not good at caring for others or taking others perspectives. It’s quite an attack on the person as well as making unsubstantiated judgements on the rationality of their argument.

So perhaps if, when I am tweeting. I mention that ‘It’s not why we trained’ or ‘Think of it from my point of view‘ is very often a derailment, professionals might want to stop and think, especially if that makes them feel defensive. And don’t be surprised if my response is to put it back on you, by saying, “If you aren’t doing what you trained for, what steps are you taking to change that?”. If you are not happy with your working conditions and are not able to do your job, it’s your role to get involved in activism or your trade union to change that. After all, I am not a mental health professional, you are paid to solve those problems, so it’s your problem to sort out, not mine.

By the way, there are professionals on Twitter who I really rate. To be clear they never use those phrases. They acknowledge the problems, call out the problems, clearly state how they try and avoid being part of the problem, take on feedback about what the problem is and take clear steps to not be part of the problem. Alternatively, they just say what they are doing about the problems.

In addition this is a useful website about derailment, if anyone wants to know more.

http://www.meta-activism.org/2015/09/derailment-handbook/

An Enormity of Unbelief

First thoughts are the everyday thoughts. Everyone has those. Second thoughts are the thoughts you think about the way you think. People who enjoy thinking have those. Third thoughts are thoughts that watch the world and think all by themselves. They’re rare and often troublesome. Listening to them is part of witchcraft.

A Hat Full of Sky by Terry Pratchett

One of the problems I have with thinking about my parent being sectioned is that I remember what I remember, but nobody from my family who was involved remembers the same thing. Actually we don’t seem to remember any of the same events at all. Some people don’t seem to remember any of it, but fragments seep to the surface anyway and then float away. This means that the whole story doesn’t make sense. This is trauma, the outgoing circles of pain that disrupt memory, disrupt meaning making and make it impossible to see the harm for what it is. People struggle even to have First Thoughts about these sort of events.

There is one bit that we are all agreed on. The hospital he was detained in was called by all of us “that horrible place”. Various people I know have been physically ill and they were in hospital at times. I guess none of us thought those hospitals were nice, but the general feeling of horror about the psychiatric unit is not the same. It wasn’t only that people who are not in touch with consensus reality, or are very confused or very frightened are worrying and distressing. This is entirely about how the staff talked about people and how they treated them. It’s about the things we saw the staff do but don’t always remember and don’t talk about. It’s about questions I asked and asked, that got no satisfactory answers. It’s about the attitude that someone who is not experiencing the world the way we do, or not experiencing themselves in the same terms as our culture allows them to, does not have human rights and if they have no human rights they have no meaningful feelings. It about witnessing abuse, but not being able to do anything about it.  It’s about being silenced to the extent that you cannot even articulate what it is you disagree with. It’s about all that being state enabled and state sanctioned terror. You can’t argue with people implementing the law. Though in this parrallel reality there is no court, no judicial oversight, no jury of peers. The process going on here is a social one not a medical one. It is one of judging someone as less than human. It’s just history and habit.

I remember a lot of adults turning up after things had got very difficult at home. I remember finding the officials very aggressive and violent. I didn’t think much of them as I felt I had been handling things better than they were able to. Before they arrived everyone was safe and my parents had stopped hurting one another. I was sure that if I could handle things without force then the adults should be able to. Of course, this was because I saw the situation differently to them. I saw it as a misunderstanding where one parent had become aggressive because the one who was struggling was behaving in ways they found hard to make sense of, and so the situation had escalated. The adults saw it as the parent who was struggling being the aggressor. The officials had an easy story to get hold of and once they had, they were out to impose it on everyone. I felt my Third Thoughts were more use and gave us a way forward.  I looked at the adults and thought they couldn’t even manage to have Second Thoughts. I wasn’t really sure that they were people who liked thinking about their own thinking though. They might, I guess, see something about themselves they didn’t like. I do know that up until that night I had wanted some sensible adults to turn up and deal with the things I could not. After they turned up, I was pretty clear that I didn’t need more frightened adults in my life, as they only made things worse.

I am sure I remember my parents being asked questions by lots of adults I had never met. I remember this even though I think it would have been highly unlikely that any adult would have allowed a child to be hanging around that sort of conversation. However, I have a pretty good idea that I would have found a way to listen in if at all possible as it was always best to know what the adults were up to. Meetings like that never boded well and it was better to get your information from the horses mouth than try and work out what adults really meant when they told you the version of events they could cope with afterwards.  I remember that I was frightened that the adults would listen to the pleas of one of my parents not to take the other away and that would mean that the problems at home would be ongoing. I didn’t know what might happen if that was the case, things seemed threatening enough already. I remember that I was quite relieved when it became clear that these objections would be over-ruled because I didn’t think things could go on the way they were. I was also pleased at first that the parent who was going to be detained would be going to hospital, not to jail. That seemed right as things were certainly not going well with them. I thought hospital would be kind and approach things like I did, with people listening and trying to make sense of things with my parents. I thought they would be more skilled than me and more able to cope. I thought they would be more able to keep going over time. I didn’t know that the hospital was going to be pretty much a jail.

I was very upset though that they didn’t think to listen to what I remember happening. It seemed easier for them to believe that the parent that was clearly struggling, the one who dipped in and out of sharing the same reality the rest of us did and was finding the world hard to make sense of had hurt the other one because they were ‘mentally ill’. I rather remember that the aggression had been the other way around, before it escalated and got out of control.  It wasn’t the parent they were detaining that I was frightened of, but no-one was interested in that part of the story. I felt that adults had their easy story, the one they wanted to believe. There’s no point in having Third Thoughts if you are the only one having them.

The professionals who came later to tell me about decisions that they had made tried to explain ‘mental illness’ to me and ‘diagnosis’. I listened. I listened to them explain their confusion about what the diagnosis might be and how the situation was complex and how they would give my parent medicine which might make them better. I asked them what tests they were going to do to find out which problem it was as they weren’t sure yet. They said, ‘There aren’t any tests as such…’. I heard them out of course, as I was taught to be polite. I did have a view, when they had stopped talking. However, it takes time for the habits of mind that come from trust to fade- I had an idea that adults weren’t telling me the truth because they tend to patronise children to protect them. ‘I know I’m only 12, but its OK, you can just tell me you don’t know, can’t find out and don’t really know what to do so you just have to guess’. I know now that the adults had managed to kid themselves and all of society into a lie so grand that it is only just beginning to unravel. A lie that seems to be based on so little evidence that I cannot believe that we ever engaged with it as a society. It is also a lie that starts to unravel as soon as you ask whether there is a test for the diagnosis. I listen to my Third Thoughts, they seem to get to centre of the problem. I don’t know what you call the thoughts that lead to a lie like that. Wrong?

I listened to the adults tell me that because my parent was ill they didn’t have responsibility. I thought sometimes they did, sometimes they didn’t. However, when I talked to them, even when they very confused they seemed to be making moral decisions. I thought that this idea made no sense in general. Up till then they had being making perfectly good choices not to hurt me or anyone else- in spite of everything. Both parents had had choices and neither of them had made good ones. Society had made a choice not to provide services until things were at crisis point. Mental Health services had made choices not to talk to my parent about the things that were bothering them, but to see some experiences as something that should not be talked about or engaged with, increasing fear and isolation. Lots of decisions, none of them seemed very good to me. Third Thoughts again.

When I visited my parent in hospital, I was pretty clear that ‘the horrible place’, wasn’t what I imagined a hospital would be like, which was pretty much the last piece of trust in adults I had left after that night.

So if you work in mental health I will probably give you a hard time, though mostly I don’t say anything unless I am trying to get you to think. I am trying to get you to have some Second Thoughts, I do think you should be able to manage that. Whether or not you personally use violence, you are part of a system that often enough uses coersion and force in ways that destroys a fundamental trust. You are also pretty arrogant.  You think that trust can be rebuilt whatever harm you do. You think that trust isn’t something that is earnt. You think that it is a quality you ‘are’ because of your role.  If you are a psychiatrist, mental health nurse or AMPH, you think that in spite of your role and the purpose of your job, you are a special case. I am here to tell you that none of those things are true. You are a special case if you can see the abuse and violence of the system  and understand that although the officials say it is necessary, is much less necessary than they want it to be. You are a special case if you can see that, name it and then do something about it. You are a special case if you don’t respond to my point of view by assuming that I am against detention. I think it is necessary at times. You are a special case if you don’t assume I’m against medication because I disagree with the system as it is running at the moment. As far as I can tell it is overused, but helpful for some people at times. You’re a special case if you understand that I am not against psychiatry, but against the abuse of psychiatry.

I once told someone that I didn’t hate the officials and professionals who use violence and deliberately and repeatedly hurt my parent, and unthinkingly harmed me and my siblings as yet more worthless collateral damage. That is true. What I did do was reject them and reject all authority, falling back on my own resources. I listened to my Third Thoughts and came to the conclusion they were much more important than the official’s easy stories. I decided I was not going to be tricked into doing things I thought were wrong. If I thought it was wrong, I was going to resist doing it in all the ways I could. Power and authority could do a lot but they couldn’t make me agree. The interesting thing about that is I never became oppositional or unco-operative. I got on well with the adults in my life, though not in the least because I had learnt what might happen if you are not easy to understand, or challenge their need for order and conformity. I had learnt that our society rests on an unseen bedrock of coersion and threats, some overt, some subtle. We don’t live in the society we are taught we live in. However, although I remained a child that every teacher would be happy to have in their class, every university wanted, every parent was happy to have as their child’s friend, I never did anything ever again just because an adult asked me. I always had Second Thoughts or Third Thoughts about what people in positions of authority might be about- Are they lying to me? What do they want from me? What needs of theirs am I meeting? What things are they avoiding that they can’t cope with which might hurt me or others? Not least I learnt to separate out people ‘doing being nice’ from the function of their role. I learnt that social structures ask people to deliver an outcome and that someone seeming to be nice was no measure of the function that they were there to fulfil. I became oppositional to social structures and the function of social roles. I became angry at people who were not clear about what their social role asked of them and didn’t question any conflict between their personal sense of integrity and what they were asked to do. I became intolerant of people’s repeated willingness to believe easy stories and outright lies; their decisions to not see, not hear and not recognise abuse. 

Mental Health professionals taught me that there is good reason to have an enormity of unbelief. That lesson is a lifelong ache.

 

 

Small, sad stories (2)

I am not sure I should go to conferences. There is a lot of talking and exchanging of stories. At this conference I was happy to learn new things. I don’t know much about mental health and I am of the view that the only way to protect yourself from what you know is to learn more.

This time I thought I would give myself a break though and I actively avoided the professionals. I was getting tired of stories of their violence, which they seemed so immune to and avoidant of acknowledging.

I chatted to an interesting researcher and had a biscuit. Then I got chatting to someone who was interested in a ‘Mad Studies’ course.  We talked about the time she had spent in hospital. The psychiatrist had wanted her to take medication and she did not want to take it. The staff had all come into her room to talk about it. She had explained that it didn’t suit her and why it didn’t help. She had tried to say what she wanted instead. The psychiatrist had said, ‘Well we will give it to you, but we will record that you didn’t agree.’ She had taken the pills. I had nothing to say. I understand coerced compliance can be better than being forced. Some control is better than submission.

As she lifted her drink, she spilt her tea because her hand had a tremor. That can be one of the effects of the medication when it damages the central nervous system.

I thought about the fact that she was not being violent, that she could explain what she wanted and what she didn’t want and why. I wondered what ideology could be so strong that under those circumstances violence can be justified in the mind of someone who claims to be a helper, so they can get their own way. I wondered why being with someone and working with their body’s energy rather than shutting it down forceably was so hard. As the drugs can cause serious harm, it seems only right for staff to find another way. I can only imagine that that way would demand that the staff stay in touch with difficult feelings. Perhaps they would really have to consider that our cultural views of the self and the world are too limited and to learn how to maintain multiple parallel views of reality. Staff might have to make sense of states that seem too hard to understand which perhaps seem to them to involve the loss of self, or of self-in-this-world. Maybe they experience that as the ultimate death. I guess that may strain too many people’s views of what the word ‘tolerance’ might mean. 

She said, ‘I wanted to stop them, but I don’t hit people, so, I spat at them as they made me take it.’

To acknowledge this I said, ‘We don’t fight fascists because we are going to win, we fight fascists because they are fascists.’ The quote, from a source I couldn’t remember, seemed to fit. In my view, resistance is never futile. It helps us make our soul. It just might not stop powerful people from doing what they have decided to do.

Later I have a conversation with someone who when distressed struggled to access the things that were on offer by professionals, and she felt in her case staff making her take medication saved her life. I feel troubled about the balance of harms between people who are harmed by others using force and people who feel are harmed when they don’t. There must be better ways to make these decisions. I wonder with either of these people, whether anyone on the staff had made a relationship where they found out about the meanings of the un-understandable states the person was experiencing and who they claimed to be helping. Perhaps if we thought more like that it might help society to decide more clearly where we put limits on the behaviour of staff members.

I muse on what ‘It hurts me as much as it hurts you’ means, as I think about the gin bottle that the mental health nurse had brought to my party and which she had emptied by the end of the evening.  It seems to me that it makes no sense to keep on doing things that hurt everyone. But then again I guess it makes no sense to staff to be in touch with things they find hard to understand and feelings they cannot bear. Yet, we need a social response and the only way I can see out of the dilemmas raised by these situations is to find a way to to be in touch with the person who is distressed or in an altered state. To do this we may need to support each other to bear things that our society feels cannot be bourne. How can we all -carers, people in distress, staff, wider communities- together, learn how to bear it?

 

 

 

 

Small, sad stories (1)

Some stories are easy stories. In this society we seem to like a good vs evil story a great deal, where there is some sort of fight as the climax. A complex reality is trimmed to fit a storyline that plays out in predictable ways. Other cultures have meandering, interwoven stories, which layer meanings in complex incompatible ways.

This story is a short, sad story. The sort of story I experience often. These stories linger in my mind troubling me, nestling uneasily against other stories. These stories contain realities that do not fit together. They rub together abrasively, creating sore places in my mind as they settle, refusing to be easily filed away and ignored.

My good friend brought his girlfriend to a party. She had brought a bottle of gin with her, as no-one else drinks it. The girlfriend was a mental health nurse. As is usual and have come to expect, she brings up the violence which is often part of her profession within the conversation. It seems that mental health nurses, in the main, have lost sensitivity and do not understand their behaviour in this way. Internally I wince, yet sigh with resignation as she talks about her new job role with a jovial re-enactment of a restraint. My partner locks eyes with me. I know what the message is, “Don’t make a fuss! Think of our friend!”. As it turns out this time someone else speaks, as the mental health nurse goes to get drinks, making my points for me. Another friend says, “They do that. When my nephew was sectioned they insisted on giving him drugs that way. We asked them to just hide the meds in his food as the hold and the injection distressed him. They said he had to take responsibility. We said, but he’s mad, he’s been sectioned, surely that means he can’t take responsibility? Isn’t that the point?”. I acknowledge the feelings and the story, but don’t unpick it further as just then the nurse girlfriend returns. When I tidy away, I realise the vodka bottle is nearly empty. The nurse girlfriend hadn’t even seemed drunk. My partner and I look at the bottle. He says, “I think she was trying to tell you she didn’t like her job.”.

“It’s not my responsibility to fix that, its hers,” I think, bitterly.

Why I don’t like easy stories…

Sure enough during a coffee break, someone is talking about an unsafe child & young person’s inpatient ward they worked on. I make a sympathetic face, but inside my stomach tightens. The worker tells me a young person was throwing chairs, that they ended up restraining that person, a Dr. (Psychiatrist) came to see what had happened then went away. The worker was disappointed the Dr. didn’t help. The restraint lasted several hours. They felt someone should have come to help them and that the person needed medication. In the end the person was medicated. I hear the passive voice in that sentence. I can feel the impact of that grammatical twist and feel an easy story taking its grip. Grimly I acknowledge to myself that the passive tense can ony mean that what happened involved forced sedation.

My mind races. I swallow and try to sound sympathetic, “That must have been tough.” They agree it was.

Culturally we seem to believe that when a child is showing threatening behaviour that the adults should take back control even if that means fighting fire with fire. We get drawn into battles motivated by the need to dominate. This gives us an easy story that shapes our response to the child’s distress. I just don’t believe that this forceful approach works. Retraumatisng traumatised people doesn’t change the problems that lead to these distressed and distressing behaviours. I believe we should strive to find better ways forward. I decide to push my luck. “Everyone seems so on their own with such a difficult situation. It’s scary when things are out of control.” The professional doesn’t seem annoyed. Perhaps they haven’t picked up that I am thinking about the patient they restrained as much as I am thinking of them.

I listen as the worker tells me that the young person was behaving that way because they were unwell. While she talks I struggle to decide which part of this easy story I want to make more confusing for her. Is it the belief in distress as an illness, the belief that the drugs correct an illness process, the belief that behaviour cannot be de-escalated, the feeling that restraint is the immedate response to distressed behaviour, the lack of a plan to intervene before things get to a head, the lack of an alternative way of making sense of what the young person was doing? As the worker talks I am remembering the one time a child hurt me, I had not realised that four of my colleagues were standing behind me in a way that was very threatening. I also remember how unaware my colleagues were of how they had contributed to the problem. I am thinking of many times that a young person throwing a chair did not end up with physical or chemical restraint.

“I wonder what happened just before your patient threw that chair?” The worker I am talking to looks confused. “Do you think it might have been possible to do something at that point to avoid things getting so unsafe?” I don’t want her to feel there is nothing that can be done to change things for herself and the young person, even though she is unsupported.

I think about people I have talked to about their experience of chemical restraint, about their feeling of powerlessness, humiliation and worthlessness after forced sedation. (“I just wanted them to leave me to cry, they say it was more like a scream. They said they wanted me to feel better. What they give you makes you feel like you are drowing in sleep, it pulls you down and you can’t fight it, it takes you over. I just felt powerless and they could take me from myself anytime.”).

As the worker talks, I remember a friend told me when she was out of hospital, “It builds up, they ignore you or don’t listen. If you say you are struggling they just put up the medication. They don’t care about you, they just don’t want you to cause a problem and they are in your face all the time. At some point, you just need some space.”. My friend was 16 years old when this happened, about the same age as the patient on this ward. In her case help in hospital seemed to mean being under pressure to see her difficulites in the medicalised way the adults wanted and control over every aspect of her behaviour. To me the experiences she told me about seemed like a harsh punishment for feeling suicidal. It also didn’t seem that she experienced a response that was likely to make her want to live. Is that what hides behind the easy story the worker is telling me? There are too many stories like the one my friend told me to dismiss that possibility. Certainly the voice of the young person seemed to be totally missing from the worker’s account. At the same time, I remember another friend who sometimes lost control when extremely frightened. She told me that she liked it that her foster parent would hold her so that everyone could stay safe and would let go when my friend was back in her own control. Eventually, she would relax and the hold would turn into a cuddle. Another story, another layer. These stories in my head are not easy stories. They are full of questions, conflicting understandings and confusion.

Maybe forcing sedation at crisis point is the least worst option. However, I decide I feel angry with the easy story the worker told. It doesn’t seem right to me to dress this up as a medicine that the patient needed. Perhaps sometimes things go too far, but in my view when this happens it should be called chemical restraint. I see it as an indicator that something has gone wrong in the way the situation was managed and the relationships between the staff and patients.

I swallow down my angry words, they won’t help here. The weight of them makes a lump in my throat. “I guess you really needed the patient to get that medication, so you could feel better.” I’m proud of myself, I managed to say medication not ‘chemical restraint’. The sentence captures a potential dynamic without going into too much inappropriate detail. In the past these conversations haven’t gone well. After the last time I was confronted with an easy story, I convinced myself that people might be more able to consider different ways of looking at the problem if I didn’t call out the ways they used language to protect themselves from what they were doing.

The worker looks at me with silent fury. One quick look, with pursed lips. We avoid each other for the rest of the conference.