October 29, 2016

Content Notes: State Violence, Abuse, Descriptions of Gaslighting, Domestic Violence.

Given the stigma attached to psychotic disorders and the misinformation surrounding psychosis, we sat down with @Blurjeebie and @CeCeSadist to discuss their experiences and share their thoughts on what psychosis means, inside and outside of institutional spaces and pathologies, how such conceptions fail or succeed in representing them, and how other approaches rooted in survival politics can be useful for thinking about psychosis, safety and care.

What does the term “psychosis” mean to you? Is it a political label, a medical description, an idea you reproduce through choice or because it’s the only term available? Is it useful? Does it identify you? Does it represent your struggle?

CeCeSadist I have real problems with how it’s conceptualised in a medical setting. The only reason I personally hold onto it as a label is due to the fact that people dismissed my experiences, so the idea of “psychotic” became useful for demonstrating the reality of that – its directness was useful too. I feel like my use of “psychosis” is sometimes about a reappropriation of the term. Sometimes using the word psychotic feels more to the point of where things are, and often highlights in a similar way for me how I situate myself within using “queer” – in that there is a vagueness to it, but firmly rooted in external conditions and experience and social setting, being able to use a phrase and create meaning from it but with the explicit notion that it is something outside of what is accepted as dominant experiences, or an idea of what and how people should think and how they should experience the world.

Blurjeebie I was diagnosed with a psychotic disorder quite young. All of a sudden, after having years of positive and negative symptoms – by positive I mean auditory and visual hallucinations and, for me, persecutory thought patterns. And then having negative symptoms, which for me manifested as social withdrawal, disordered thoughts, and what’s famously called ‘word salad’ – I was very much medicalised into a world of psychiatric logic. Certain medical terms became a badge of stigma. I lost a lot of friends and my family reacted very awkwardly. I was forced into hospital for a long time. Whilst still in the midst of bad experiences, probably in my late teens, I realised that psychosis was very much codified. I appreciated talking to other people, maybe people I was in hospital with, about their experiences and figuring out certain trends in people’s mental states and experiences to do with this thing we call “psychosis”, which is typically classified as hallucinations and delusions. Some people needed the label, to have the diagnosis in order to say “look, the reason why I’m acting like this, and why I’m having problems at home, at school, at uni or whatever, it’s because I’ve got this label”. I found that quite difficult though because I was ashamed, I didn’t feel that it really applied to me because I was in this massive state of denial for a long time. As my politics have changed I can see that reclamation for people who have these types of experiences can be a positive thing and, something that [C] was saying, it’s very direct, ‘psychotic/psychosis’, and I don’t think we should shy away from these labels and forms, even for people who maybe aren’t diagnosed – if you’ve got these experiences, or you’re suffering mental distress, then you’ve got mental distress, it’s not a one size fits all where legitimacy comes from categorisation by the medical profession. It’s difficult though because it’s rarely perceived as something positive to be identified with, but by the same token it’s a concept that I think more and more people need to understand and analyse better in society under capitalism.

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Would either of you consider yourself to have a disease? Are you ill? I ask this because these would perhaps be the strongest connotations associated with psychosis by those in power.

C I definitely tend towards describing myself as ill. I was medicalised and diagnosed at 18. It was always explained to me by doctors, by services as “this is a blip” and “give it X amount of time, X amount of bed rest, X amount of not working etc. and this will go away”. They kept saying “it’s like when you break your leg” again and again. By virtue of knowing quite a few people dealing with chronic illnesses, being able to find people who’d understand that I feel this is something that won’t go away and is in fact a part of my life and doesn’t have to be some damned tragedy, even though at times it might be horrible. So the idea of illness has at times felt useful to me, but not “disease” because in the same way that this worries me regarding various forms of oppression it’s also just such a nasty way of coercing people into demanding cures, which has always terrified me more than anything, I think.

B I’ve always stayed away from categorisations of disease and illness – disease especially because I get this sense of “othering” and something requiring pathologisation and determination via biology, as if somehow this is a genetic glitch or a biological factor that can be zapped away or cured – I’ve always found that discourse really problematic. Similarly, I’ve had psychiatrists say to me (though they never told me this was a temporary thing like they did C – quite the opposite) that the world would never accommodate me. I remember one really awful psychiatrist who assessed me and he offered me a handful of options for my life with the kind of labels/diagnoses I’d been given:

  1. Wind up dead at a young age
  2. Would wind up being a “scab on social security with lots of children”, which was particularly disgusting considering the class background of my family and the poverty they came from, and being told this by a middle class man handing out my fate to me
  3. That I would become, and these were his words not mine, a “prostitute”

All of these were framed within the context of me having an unlucky and grim long-term disease. Sure, I still have problems today, but I’m not at the same crisis level I was at 10 years ago. Just because these things are described as illness and disease, doesn’t mean those experiencing it have to take on this framework for the rest of their lives. Experiences and diagnoses can also change over time, and the medical world can make mistakes.  Sure I’m still poorly sometimes, but my body is very much part of struggle and the reproduction of all sorts of things – penetrating forces and dynamics under capitalism – but I can’t be seen as othered. I think it’s a cop out to say that mental health experiences are relegated to just “a few bad apples” who represent a minority of people – lots of people face mental health problems, lots of people experience psychosis, and I think that we have to put the buck back where it should be, which is basically looking at society rather than saying “this is a biologically determined thing and you’re therefore an outsider” – this rhetoric can easily slip into victim-blaming.

C I always find psychosis, as a definition within a medical model, confusing. After my initial engagement with mental health services, I was also given a diagnoses of PTSD. I always found it strange where these institutions then drew the line between these two conditions. What’s a hallucination and what’s dissociation?! That feels pretty damn arbitrary to me – if I see one thing and they call it a flashback because I’ve experienced that as an idea before, “that’s PTSD”. But if I experience something they regard as “new” in some way or some other slight detail in the experience then that’s “part of the psychosis” almost as if they imagined these venn diagrams of things and to be legitimate an experience had to fit within one of the circles. I always found it really strange when they first gave me a diagnosis of “psychotic illness” which they said they’d given me because although my experiences were “extreme” they didn’t want to say schizophrenia because they believed I’d “recover” from whatever they thought this was. Being handed a prescription with “psychotic illness” written in big black letters with a marker pen felt weirdly Victorian, akin to being branded as “hysterical” or some other slightly gendered term or something that alluded to something awful, but vague enough for them to say “don’t worry, bed rest, bed rest!” etc. It all felt so strange at the time.

My care co-ordinator became another agent of medical discipline. What I actually needed at that time was a person who could help me with all the paperwork this new diagnosis brought along with it. So much energy was required to constantly say “this was a thing that happened”, the strange complex between the NHS and the DWP – which considering everyone telling me what I needed was rest, effectively involved working a full-time job of form-filling, appointments and other bureaucracy. I found another contradiction when I went back to university. I found it impossible to find support there unless I presented myself in the form of some kind of inspiring story along the lines of “well 6 months ago I couldn’t read because things were so bad”. Then the response would be “oh my god, you’ve triumphed over this thing now we will give you x, y and z help”. But to just say “I’m not really better and things are difficult and the very fabric of how the course is laid out contributes to that” was not an option.

In what ways would you say an approach grounded in survival, and a politics of survivors – especially in regard to ideas such as #ibelieveher and a politics rooted in trusting and listening to experience – shape your struggle with psychosis? How can the difference in people’s psyches and experiences be accommodated, rather than erased or subject to discipline?

C I’m keen to create collective spaces where not only can we assert that, yes, what we are experiencing is real but also where the idea of exploration is not something that is horrendous and dangerous – allowing those narratives which have happened to not be pushed down in the way they are everywhere else, to reject the idea that to be “better” in some way is to get away from those experiences rather than engage with them.

I’ve found the notion of gaslighting to be quite useful, and the similarities it has to dismissals of my experiences of psychosis. A focus on belief and experience can then become a way of attacking that, just as it does when we’re talking about reproducing rape culture, which ultimately changes the material experiences of that phenomena. I’ve found connections here between the way people react to my experiences and their connection with psychosis.

B In the spaces that I operate in, even though they’re led by marginalised voices, there’s still the tendency towards a sort of activism which replicates the language of caring and understanding of people’s differences, but I often feel, with psychosis in particular, these differences are never really meaningfully articulated or examined. First and foremost, because as we know, we’re already seen to some degree as othered in society because of these experiences that are outside of a common understanding of reality that society has. I think that makes it very difficult for me to talk about this even in the groups and the spaces that I’m already plugged into that are safer than wider society. It’s not that I don’t feel that these are people who wouldn’t necessarily believe what’s happening to me, or who’d reproduce the moral panic surrounding psychosis – many of them share my politics closely already. But I find it’s awkward for them to talk about the fact that the realities are different and maybe they’d struggle to understand or maintain a conversation about how this situation can be more visible and tackled. People need to be safe to express these things. A recent example I had was at a meeting where people come for collective support and action, many of which are survivors of domestic violence, many with different mental states. When listening to someone share their story in this space I found it really challenging, but I didn’t feel comfortable expressing my discomfort. Perhaps the idea of content noting the topic would have helped, but in a meeting, people can have different awarenesses of these things, and in organic conversation it can be easy to forget them. I feel that people with psychosis aren’t given the same allowances. Whereas depression and anxiety have been (relatively) normalised to some degree in society, things like psychosis, bipolar and, especially, schizophrenia are still treated as almost totally alien. I know that I sometimes don’t have the skills, language and clarity of thought to articulate things in a way that won’t appear threatening, or derail a meeting. This makes me believe that a focus on need, rather than accommodation, is what’s required. It upsets me when I see people who hold themselves to be leftist role models, even those who have excellent positions on centring survival and experience, still say things that are really harmful to us. And it’s rare to get a decent response when this is challenged. I hope that better spaces can be reproduced by a broader education on these issues, but it can’t be something that remains ignored. Sometimes it feels that psychosis just isn’t taken seriously.

C I definitely agree. I also feel that the interlocking nature of things becomes something that is so often lost, ending in often harmful disagreements caused by presuming experience and forcing a coercive disclosure of symptoms and conditions is something I feel I’ve experienced before – as if I actually have to announce “actually I have been there with this”. Some of the worst stuff I’ve experienced on the left has been having to angrily disclose, which has definitely happened a few times. In one anti-capitalist mental health group I’m involved with, people are coming from such different backgrounds, and different points in health services – services users past and present, people who are service providers – I think it’s quite radical to have interactions with all those people without assuming that any of them have *NOT* had these experiences, because wherever you are at that point there’s always going to be the possibility that talking about it in certain terms gets you presented as an expert, rather than someone who’s been through it – it’s something I’ve noticed with knowing more people who’re working in services, because they don’t have the space to talk about that, at all, because it would put them at risk in their professions. So I think it’s getting away from a presumption of identity and experience – understanding material conditions can be quite useful in that way.

Is there a need to de-pathologise survival mechanisms? What is the relationship between those who are deemed “psychotic” and those (gendered, racialised, class-based) carceral logics which shape and reproduce the diagnosis? How is the metric of “health” around experiences with “psychosis” related to the capitalist work-relation – and its attendant discipline of “productive subjects”?

C The phrase someone said to me was “approaching it in, out and around services”. One thing I’ve found in leftist circles, when mental health organising comes up is that it can very quickly become “mental health for activists” . There’s quite a dislocation I think, in part, because people who are in various states of being institutionalised, or incarcerated, are viewed as unpalatable. On the one hand I always want to be fighting for what service users need from services as they exist and pushing that as far as possible, but also knowing for me personally that so many of those institutions I’d like to see destroyed. I guess the way I see through that is mainly addressing the fact that talking about my experiences of mental health within the left has been so dislocated from people who are in any way institutionalised – and I find that really worrying, that it becomes a facet of the experience of being white and middle class and university educated, rather than being understood in a context of external conditions that disproportionately affects black people, poor people, survivors, and is massively gendered in loads of different ways. It can so often be another site for cliquey things of how do we deal with the problem of activists being “burnt out” – which is really important, but can just become an extension of the issue of smaller groups disengaged from wider ones and from people outside of those ‘scenes’.

B So, looking at mental health services and the various institutions that are available for people, some people, to be able to access support – they can parrot the language of systems of poverty and racism, but at the same time they also tend to reproduce really unhelpful discourses around the causes, consequences and treatment of different kinds of mental health statuses by enforcing an institution of discipline and of psychiatry. There tends to be very little questioning of how bodies are exploited under capitalism, or how all the distinct, interconnected relations of oppression – whiteness, patriarchy – reproduce themselves through space and time, and are internalised. You’re far more likely to be diagnosed with schizophrenia or come into forced hospitalisation under the Mental Health Act, for example, if you’re a young black person. Mental health discourse doesn’t seem to take full account of the effects of that, which I think then folds back into the idea of pathologising via disciplinary power relations that certain people are forced into. Women are heavily affected by all this, but then that’s a problematic thing as well – most of the statistics you see still tend to reproduce a very cis-heteronormative kind of logic. I also find this troubling, this gendered aspect – but also because the statistics that back this up are taken from those who are already in mental health services, or people who have gone through the process of being diagnosed – there are probably thousands of people in the UK alone that experience conditions or symptoms of psychoses, or depression, or whatever it may be, who are avoiding the system, through silence or aversion, or they might simply be privileged enough to not be snared within the system.

When I was first forced into a hospital mental health ward it was an adult ward, and of the 30-40 ppl there under section (some for schizophrenia), the majority were working class women, they were people of colour, particularly black men. Eventually I was able to secure my release, but then (in their terminology) I relapsed, and was hospitalised again. This time though, there weren’t enough beds available, so they had to send me to a shiny posh priory (a privately run network of mental health care institutions) for a few months. The difference between the backgrounds of the patients there was just incredible – primarily white and middle class, the environment was different – it didn’t feel like a prison, people who were put on “red watch” (24-hour close supervision) weren’t held in their rooms 24 hours a day, you were allowed to walk the grounds, accompanied. The freedom for people sectioned in that kind of hospital, and the access to resources – compared to the previous place I was detained where it felt like people were left to rot on a ward – was astounding. It didn’t last long, a bed was found back at the NHS ward and I was transferred back.

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How would you say the NHS ward reproduced the logic of prisons? How dominant were narratives of correction and rehabilitation, and how strong were the implications that your submission to these could secure your release?

B There were bars on the windows, you were locked into a little room, and you had communal time for a few hours in a communal area based on what risk level you were assessed as – you’d go through these gates locked with a key. Being held in isolation in a small room, with someone watching your every move – when you shower, when you go to the toilet – was very different from the short experience I had at the priory, where it felt airier, lighter, more like you’re not the problem, but that you’ve got a problem and we’re going to help you, rather than feeling dumped in, going through the motions of the NHS ward – ward rounds, talk to the psychiatrist for a couple of hours a day, you’d sit in the community area (if your status permitted it), and sometimes go out, eventually – after a few months or even years, on day or weekend release. Although I’m against forced hospitalisation because my experiences of it have been so bad, that doesn’t mean that some form of hospitalisation might not be able to help people that are having a really fucking shit time and who just need to be somewhere else where they can get support. I hope people can get the help they need from these institutions. But, I think a lot about some of the people I knew in hospital – are they still there, or are they still going through the system? –  and that makes me really upset because I know it’s a more than remote possibility.

C A psychosis centre I used to attend was on the grounds of what used to be a workhouse – as someone already struggling with quite a visual brain, it all felt pretty dystopic, almost some of kind horrible steampunk future feel to it. So I had to go through the entrance and then right there was what used to be a workhouse that was rebuilt in the late 90s to still look like a workhouse, but is now in fact luxury flats – and tucked next to it, the building where I went for psychosis treatment. The place was surreal on another very material level – everyone I met there (we had regular group sessions) was under 30. I was one of the oldest at 18 but there were people there who had recently dropped out of sixth form due to issues with psychosis. It was never addressed, that we were young people, that these are people in the process of forming who they are. With regards to the carceral element, my mum had to take on something like the role of a lawyer in the way she was dealing with things. I think it was that privilege that helped me massively in not being far more medicalised, far more stuck in the system – having someone genuinely fighting to preserve my “rights” a lot of the time – in fact something that’s never talked about is this issue of rights, that you have to assert. When I came off medication other people in my group said “I didn’t know we were allowed to do that” – we weren’t inpatients, these were people who were just accessing outpatient services, but at each point it was a reminder that you don’t have autonomy, and you should – but instead you’re seen as having this condition then BAM!, you become “dangerous and awful”. The racial makeup of my group was clear as well, I was the only white person there – and because the whole treatment was based around CBT, there was obviously no mechanism for dealing with all these things, how our experience and background might be tied into how we might be diagnosed and treated. We were told we weren’t allowed to talk about our experiences in sessions – everything was focussed around strategies to cope – but you could see, even in the brief conversations we had, say when having a cigarette together, became a more useful exercise then being told to deny everything that had happened, instead to become productive humans out there somewhere. I had to end up lying for quite a while – pretending I was still on medication, because I was terrified – I didn’t tell anyone, even my supportive parents, I’d just not disclose this because the fear of that being taken as non-compliance. I don’t think I could have imagined, years before that, that I’d be in a situation where I’d be thinking about something that was supposed to be a medical practice, wondering if I’d get into trouble for not complying – things just felt so surreal.

I remember one particularly awful point of crisis, going to Croydon May Day Hospital on a Saturday night and ending up not in a psych ward, but in a psych “area”. I guess one thing that I hadn’t expected at the time was just how many people would be brought there by police. From my bed, I could see a couple of people who only had cops with them and very obviously being held against their will – having a guy next to me shout “put me back in the cell” was a particularly horrendous moment. I don’t face racialised violence, but am still scared shitless of cops – I was terrified, struggling to speak – my mum noticed that I’d suddenly got worse at that point – to try and just get out words and just say “cops, there’s cops here” when I’m supposed to be somewhere that I can feel better or at the very least, be warehoused in a place that I don’t feel worse! The presence of that was just so stark. Even the layout of the room meant that I could see others going through, not the same, but something that had some modicum of similarity to what I was feeling and basically being treated as though I should not make any connection with these people – don’t look at them, don’t interact, keep this curtain here, don’t worry about all these other people – when they felt like more useful people to be around than the people who were cops and doctors – it was lying on a bed for 5 hours having to piss in a cup and get my blood taken. At that point, I was at the intersection of police and the NHS, just another site of trauma for me – I can’t imagine how it must have been for others in the situation.

B I just remember being very scared when I was first on a psych ward because all these older people were there, and exactly as C was saying, I was told not to speak to certain people, certain people weren’t allowed to talk to me and that was a really odd dynamic. We never really were allowed to come together even in the communal environments to talk to each other and I think really that’s just what we needed because I saw from people’s charts that they had similar diagnoses to me. It was so isolating – you’re in the room by yourself, you’ll meet your psychiatrist every day, by yourself, and then potentially you’ll eat by yourself. The fact is that you were stripped – you weren’t allowed to wear your normal clothes inside, you just felt you were being forced into a role where you were a victim or someone who needed to be corrected. I don’t think inpatient experiences, whether forced or voluntary, are something that should be flattened or equated to other forms of treatment because it is a different kettle of fish altogether. In terms of therapy stuff in hospital, they’re supposed to offer people with psychosis and schizophrenia something called “family intervention”, which itself is horrible terminology. It effectively means that you’re forced to sit there, with people – possibly an abuser – possibly someone who doesn’t understand, and discuss everything. My family’s politics were bad enough, but to have to sit in fucking therapy with them once a week, no thanks. No one wanted to talk about the broader social relations and family relationship, they didn’t want to talk about violence – they’d have rather pumped me full of Chlorpromazine or something.

That’s raised the cis/heteronormativity of all of this – whilst some of us here agree that it is necessary to abolish the nuclear family as an institution, it seems that so much “care” requires a reproduction of that institution – could you talk a little about that?

C One of the things I find with a normative family dynamic is that elements of my family had their own issues, or histories of traumas and situations and for different members of my family it was hard for them to conceptualise things outside of the idea that “I’ve been through X and I’m still here, why can’t you get there” – it became like something used to dismiss the severity of the challenges *I* face in my life. I’ve found with things that exist outside this strange generational logic of the family, more healthy – outside of a biological or normative family became a lot less of a thing I had to contend with – I’ve been really lucky in that the people who’re now a massive part of my support network are closer to something that represents a family now – by virtue of their broader understanding of the role of social conditions that affect your experiences in different ways – and by virtue of their politics being about survival.

I think having a variety of points of connection with people, gets more of the notion of mutual aid, which does actually filter into your life means you can care for one another without being obliged to ringfence your problem outside of the spaces where you have to deal with it.

B I’m so much happier, and healthier, because of the support of others. But I always got the impression from one of my parents, who didn’t want to understand or address what he was doing or deal with his mental health issues, that he thought mental health problems were a cop out and a sign of weakness. He was macho. It was never helpful because how can you start to heal yourself in these sort of situations, return to an abusive environment, not just due to domestic violence, but also a place that denounces there being a problem and holds the view that you can just ‘snap out of it’? My problem seemed invisible to him, even during the massive physical changes my body went through. It was like he didn’t think it was real – again demonstrating the importance of believing the experiences of others – he could just see certain patterns of behaviour. He used to get very angry at it. But none of this was ever pulled out, or pulled apart, even in therapy.

One of the safest decisions I could make was to escape and come to London, to do something better – get a grant to go to university, meet other people and begin to build my own kind of support networks. I think that was so important – trusting and caring support networks are things that need to feed back into safer spaces too. Although I often don’t tend to engage when in these spaces – sometimes because it’s upsetting, or because I still feel at risk by exposing myself for fear of reprisals (even if that fear isn’t entirely founded – though it feels like a genuine fear) – that doesn’t mean that I never want to talk about all this stuff, with people, with my partner. Having the option to share in safety, creating a space to be able to share what I’m going through without being treated like a ‘freak’, is important because it can be tiring keeping a lot of this hidden. Though there’s also the dynamic whereby sharing things with “healthy” people can lead to them trying to “fix” me, the idea that their healthy minds are the right way to think, and they can solve my problems – that’s not safe for me.

C In a similar vein, I was once involved in a relationship with someone who had some basic knowledge of CBT. We’d have quite regular arguments about politics, where I’d get quite angry about a point – which could trigger auditory hallucinations and sometimes visual hallucinations too, at which point my partner would often jump in with totally inadequate CBT logics, in an effort to switch to providing care, would say things along the lines of “name 5 things you can see, 4 things you can hear”, which always felt like another means of implementing discipline. Considering this would be in reaction to this person saying something shitty, their reaction would be “now C is freaking out”, but rather than deal with the reaction, would just “leave the discussion for another time but let me provide care around minor CBT things” and it was just ridiculous.

When it comes to talking about things more in public – a couple of years ago when things had reached a peak in how awful I was feeling, in lots of way social media and Twitter were incredibly valuable – I quite enjoyed the idea of tweeting quite literally from my parent’s attic, airing my thoughts not as an ‘expert’ just as someone trying to cope in quite surreal settings. I naively thought that wouldn’t be a problem, that simply being that overtly public about what was happening, or that it would go a lot more smoother than it did. I remember the first time I began writing about being a survivor, and the ways that intersected with psychosis – it led immediately to me being in a position of danger, involving interactions with an abuser. It’s really horrible when you have that one space that you feel able to just “put this stuff out there”, that I could use whatever tone I felt like using and even joke about it – really present my perspective on something. To have that so violently threatened was awful – I felt unable to imagine any way to be myself in public, I felt trapped. That was probably one of the darkest periods, I couldn’t imagine a way beyond it, if I couldn’t even have places to share it. That led to a desire towards having spaces offline as well – and the desire became more strident, because the precarity of my safety online became a lot more clear to me.

There were points as well, not in the horrible Stephen Fry way of “let’s have a famous person disclose their situation, and that’ll be inspirational because they’re so creative” way, but I remember at a very crucial point of watching videos by Eleanor Longden – it happens that her experiences are quite, at least materially, like mine – of her having gone to uni, and it happening at uni, and detachment that way. The first true point at which I was medicalised was when I went to a university counsellor, in amongst a series of issues I was going through, I said I was hearing a voice. As soon as I said it, everything changed. I was told to sit there for half an hour whilst they called me a taxi – which whisked me straight off to a GP. But having listened to Eleanor Longden talking about her experiences – that was the first time I heard someone talking about the idea of auditory hallucination and anything to do with psychosis that wasn’t like the serial killer in Criminal Minds, because until then I didn’t know anything that didn’t describe my condition as anything other than evil, it was just something that had never occurred to me (or been presented to me) – I thought that talking about my situation couldn’t be anything short of disclosing that I was a potential serial killer. I also really hate the idea of these things being “inspirational”, but I think that hearing different things and those things being made public can give others who aren’t medicalised in that way an opportunity to see that your experiences aren’t something violent, but that instead invite violence upon them – the idea that I could have these experiences and that not make me a “horrible person” was quite crucial and it’s interesting how much other people who’ve then known me have, that us talking together has allowed people to figure out that different experiences might not be so certain or absolute. Which can then allow us to dissolve a line that decides what is “normal” and what is “a horrible disease” – to break down that barrier seems beneficial to a number of people who would otherwise be put in a lot of different places within that relation – it has benefits, having those kind of conversations has such an effect on people at different points of experiencing services

B I mean a lot of it’s to do with mediation as well, right? Taking spaces where you’re able to mediate these experiences at various points – they’ve been through them, are going through them, people who’re unsure where they fit with all this in their lives. I suppose it’s always more awkward when it’s the mainstream media taking the narrative – perhaps it might be beneficial, I wonder how many people who saw the stories around Stephen Fry learnt something from it?  Obviously he’s not representative of most people experiencing bipolar, but being able to mediate it through different platforms and different settings I think is really positive – hopefully this interview will also play a part in that!

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How are those social movements claiming to be fighting for liberation failing to address these concerns – and in what ways do they continue to contribute to your oppression? In what ways is this struggle collective? Are there solidarity relations that could and should be developed to combat these issues?

C I think the thing that makes me not approach certain spaces is poor conceptions of ‘safeguarding’? I’ve never found spaces on the left to be with other people and to talk about the actual content of it, of the nature of my psychosis – in a safe space. To be mentally ill is not something that’s catered for, the idea of what’s presumed to help in creating these safe spaces relies on a perception of certain conditions, and I think that’s not necessarily that useful, and often comes from quite a detached place and tends to harm quite a lot of people with a variety of conditions because it’s an abstract – the idea that these conditions can be known and catered for, without ever being led by those of us who have those experiences, at all.

I felt at the point that I had been institutionalised – and whilst then I’d had some experience of politics and leftist spaces and anarchist spaces even – it still took someone from my biological family to be defending my ability to get out of that system, and defending the material necessities I required to survive. That feels like a strange disjunction to me – that the anarchist spaces seemed unable to deal with someone who was institutionalised, or even incarcerated in that way.

B I would really like to be able to communicate things that are happening, that I’m seeing or hearing. At the moment, I’m struggling with disordered thoughts – and sometimes I’m not able to speak, or only say random words – which obviously make sense to me, but it throws other people, and they back away. It would be nice if they didn’t do that. One issue I’ve also found, which is a consequence if you’re experiencing paranoid thought patterns, is that I’ve struggled to be able to (sometimes I have to think it over for a few hours) want to communicate things because sometimes I perceive everyone I’m surrounded by as my enemy, and your mind can make the connections required to justify that. I’d love to be able to share in similar experiences with people, to pull through it and explain these things.   

I don’t think any of this can be forced onto groups, I think that becomes dangerously tokenistic and it’s not really doing anyone any favours. I think potentially the idea of forming other spaces which could hopefully offer this genuine safety, that survivors can use, regardless of “official” diagnoses. I’m not even suggesting these situations necessarily become a place to organise around, when I referred earlier to cuts in domestic violence services and mental health services – these are difficult places to do that, often requiring a quite reactionary, liberal, middle-class conception of mental health. I’d probably prefer to see spaces separate to that – a place where basic material needs can be met directly.

All of this would also require people to be more confident and vocal – focussed on a pedagogical relationship, not just aimed at “raising awareness” or flattening all experiences of psychosis together, but sharing methods of survival together. These are things I’ve thought about a lot, and to be honest, I don’t know what the answer is – the scope of the thing is so vast and so varied.

C There has been a massive failing of survivors in ultra-left circles. I don’t want to take one thing and make it a tokenistic gesture “this will help the psychotics too!” – but until that’s been properly addressed, I don’t think I can ever feel safe in ultra-left spaces. The need to take that seriously has huge implications for mental health, along with many other things.

B Yes, it’s a huge problem in left spaces and on left platforms – places that claim authority on fighting oppression but which continue to promote people who are very problematic. If we’re struggling to confront rape culture and domestic violence in spaces with supposed comrades, how the fuck are we ever going to entertain the idea of being truly safe, welcomed and supported.   

base Are they ways these spaces have forced you to internalise experiences that your psyches have chosen to tend to externalise? Would including these things (hearing voices etc.) within the space of meetings be desirable, or something to aim for?

C What’s more interesting to me, is that the stuff that we’ve been conditioned to internalise is of course also the case for people who haven’t been pathologised as psychotic. I feel that if you can shift it to the situation where groups have a plurality starting from a different place – an understanding that you’re all dealing with elements of internalisation and to be negotiating that together rather than with some notion of a dominant, normative thing, it’s like these people against whatever or however everyone else is experiencing it – we’re all experiencing things at different levels and in very different ways, rather than flattening that, we can have some sense of the complexity. I’m thinking of the anti-capitalist mental health group I’m a part of – owing to the fact that so many of us there have such a visceral and personal stake in mental health concerns, the way we all perceive meetings there is going to be radically different to each other in ways that aren’t necessarily codifiable. I think we try to build in a different kind of plurality that acknowledges difference without relying on the hierarchical notion of what that space *has* to be – which is always an impossibility when you accept the fact that everyone there is going to experience it in such drastically different ways.

B When it comes to questions of accountability, I always want to look at models for accountability around sexual violence, not that these are well developed or tend to always be successfully implemented. I think one of the main problems for accountability around abuse comes down to the fact that injustices are such a complex and messy web of overlapping experiences, thoughts, ideologies, values, that it makes it harder to have a definitive concept of what accountability would look like, especially something beyond challenging immediate physical and verbal abuse happening in full view of all of us. When you add in mental health concerns, it gets more tricky. For example, say I were to describe something I’m going through, which to all other observers would be impossible to see, how would we deal with that?

One thing I’m quite clear on now though – because it upsets me when I hear it – are mental health slurs describing people as “psychotic” to pejoratively assign something to behaviours deemed as un-natural or deserving of discipline. It should be quite clear that it would be quite possible to build accountability around this – just by simply having the conversation or trying to unpick why these words are being used in this derogatory way, and thinking about how people can open their language to not reproduce this discourse.

Other stuff is harder. I’ve mostly dealt with this stuff – my history and family stuff – in the past 5 or so years, during my engagement in organising, but I’ve not recently been directly confronted with something so violent, so out of order, that it required an explicit accountability process, yet…

C I think just on the language front as well, that people have used Trump as a recent way to talk about that and the fact that people have been leaning on mental health language to describe him and his politics. I’d previously noticed this amongst ultra-left and anarchists using terms like ‘delusional’ and ‘psychotic’ about the far right in this country – I’ve had to have several conversations about how fucking insulting and violent that is. That’s something I’d like to see specifically talked about – sometimes there are really weirdly politically loaded references – I find it so frustrating and damaging seeing people use medical language interchangeably with ‘fascist’ so many times. I find it incomprehensible that people would talk about Nigel Farage, for instance, being ‘delusional’ it’s like, “no I think that’s fascist ideology, stop trying to make that synonymous with mental health”

Something I find as well, when my mental health stuff comes up in ultra-left spaces and places that are forming anti-psychiatry as well, where this horrible tone creeps in, almost like the idea of ‘false consciousness’ – if people have mental health problems but don’t regard it in some way as wholly systemic, that they must be somehow bowing to capitalist logic. I think that’s really horrible, particularly with psychosis, where you’ve had experiences that you’ve already been gaslit around, and as a survivor have been gaslit around – and then to have people who’re supposed to be comrades telling you you’re not conceptualising things correctly – where you’re castigated if your own actual experiences don’t fit with some grand theory of madness under capitalism.

B The amount of times I’ve had people quote Freud and Laing at me – to tell me what my own experiences are and why they’re happening – I find that so horrible – that needs to be held to account. For people these things aren’t happening to, there’s not only the tendency to reproduce the logics of pathology, but there’s also this idea that it’s something that’s fixable in the immediate. That really denies people a lot, and denies me an entitlement to my own life.

C I’ve found that super difficult, feeling on the one hand that I’ve got to be accepting of services as they stand, fighting cuts etc. Or to otherwise insist on a totally systemic rejection of the thing – and I don’t feel like I fully fit in either of those conceptions – I mean I’ve been totally fucked over by both of them. I have no place in liberal spaces around mental health, where I can’t oppose disciplinary systems. Equally, I feel really shut out of more academic discussions around mental illness, being told that I’m almost complicit in my own oppression by seeking any kind of care that I might want from services as they stand, which is really a pretty shitty way of calling mentally ill people scabs – I’d like accountability around that as well.

B That’s a really big theme for discussions I have too around housing. Obviously I’d love to abolish the state, but I also need to demand things from it until then – it’s just another version of the “how can anti-capitalists use iPhones?” nonsense. People struggle to understand how I can be arguing for the abolition of structures whilst still encouraging people to seek them out, if they feel they need them. Despite having horrible experiences with institutional mental health services, I can honestly say that I doubt I’d be alive without some kind of intervention from them – I just wish they had the capacity to provide care in ways that weren’t entirely based on the notion of making us “productive citizens” again. Nuance, as always, is key. I fear the point where cuts get so bad that people can’t even approach a community mental health team

C In the short term, I’d like people to have as much agency as possible – which often includes fighting to defend whatever resources people going through this actually want. If people say, and they do, that having access to services is important to them, I’d like to fight for it to be a thing, even though it’s not a series of structures that I think will help me get better – I want choice, not just another hierarchy with, instead, dictating a single idea of what treatment best meets people’s needs

B So, making the state institutions more accountable, answerable to their users, would be desirable, which I know is something made even more difficult by the increasingly limited resources these services are obliged to operate on – all of which, of course, pales in comparison with improving the quality of life of someone who, say, hasn’t even left the house in 7 weeks and needs support. And in the absence of a genuinely liberatory politics at the heart of all this, we need to be fighting for what we can secure right now.

base In general terms, it can often be impossible to imagine liberation, the struggle for survival is so consuming, and conditions are so tough, the groups and configurations doing the most productive organising seem to still only be able to imagine better collective forms of survival, for now?

C Yeah, safety concerns and harm reduction are definitely crucial things – but there should be a desire for spaces to also talk more utopically about these things, because this doesn’t really exist at all – to talk about what is optimum isn’t even on the cards at the moment.

B There are other segments and communities in the world where, due to a lack of institutions, these experiences are treated within communities instead, sometimes around a connection to land, and family structures (though still problematic) – these are happening, and I think there’s capacity for investigating this.

C The group Intervoice is something that’s interesting to me – it’s an organisation based around peer support and networks of hearing voices led by those experiencing them. It deliberately takes the experience of hearing voices without shoehorning them into psychosis, so people come at it from vastly different angles. It allows a starting point with a different set of radically different assumptions – asking instead for a collective input on how people want things to progress together – it seems a better way to proceed.

Photography by Kieran Cudlip

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  1. 2016 in articles: the best reads of the worst year ever – edible woman - […] Surviving “Psychosis” | Content Notes: State Violence, Abuse, Descriptions of Gaslighting, Domestic Violence. […]

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