On 24 April, roughly 100 people gathered together online to watch the awesome US film ‘Beyond Possible: How the hearing voices approach transforms people’s lives’. We invited this gathering to help connect people together, build some sense of solidarity and raise awareness of some of the diversity of experiences that get called ‘hearing voices’.
The night consisted of 3 parts:
- Beyond Possible Film
- Panel discussion and Q&A
- Jessica Pons: London Hearing Voices Project Manager at Mind in Camden, trainee integrative psychotherapists, family member and past/occasional user of services
- Eoin Kelly: Artist, HVN Trustee & voice-hearer with lots of experience of being in, and facilitating, Hearing Voices Network spaces.
- Caroline Mazel-Carlton: Voice-hearer, HVN-USA Board Member, rabbinical student who loves to roller-skate. Caroline is featured in the film.
- Mia Kurtti: A nurse, family therapist and Open Dialogue trainer and Supervisor from Western Lapland. Involved in developing the role of peer specialists within Western Lapland.
- Tehseen Noorani: A social science researcher, anthropologist, who is writing a book on the return of psychedelic science and therapeutics. His PhD studied the knowledge-making practices of mental health self-help groups (including the Hearing Voices Network).
Introduction & Welcome
Welcoming the attendees, introducing the panel and setting up the event.
Beyond Possible Film
“Since 2012, Open Excellence donors have been sharing the hope of the Hearing Voices approach, funding research and training new support group facilitators across the United States and now along the Pacific Rim. Here are a few first-hand accounts of the life-changing power of this profoundly human approach to the often frightening experience of hearing voices, seeing visions and other unusual experiences”.
Panel Discussion and Q&A
Our panelists discuss their responses to the short film, what it means for them as people with personal, professional and/or academic experience of hearing voices, seeing visions and community-based support. The panelists also discuss some questions/comments from participants (some of which have been edited out to protect participant anonymity – those that remain have consented to them being shared).
Questions and Comments
We didn’t have chance to fully explore all of the questions put to the panel, so the following is a list of ones that are outstanding. Some members of the panel have kindly given their time to provide some responses.
1. How does the medical model influence the ways voice-hearers are treated by the medical systems?
Rai: Hmmm … that’s an interesting question. I don’t think I have a complete answer, but I can share some thoughts. One of the tricky things here is what we mean by ‘medical model’ … it’s a pretty contentious area. Here I’ll separate it from any particular profession (doctors, nurses etc … because they can use other models/approaches) and focus on the idea of the medical model being one where voices are seen as symptoms or symptoms of an underlying problem/pathology/illness … one that may be caused/influenced by social, psychological and environmental factors (depending on how progressive and holistic the practitioner is).
My sense is that the medical model fits so neatly in line with medical approaches to physical health issues that a lot of terminology and practice is shared between the two. We are in a situation where we have medical doctors (psychiatrists), nurses, ward rounds, hospitals, discharge, admission, symptoms … in England at least staff don’t tend to wear uniforms, but there is a whole not-so-subtle emphasis on it being mental HEALTH (and this being akin to physical HEALTH). I’d argue our system is built around this idea … for good or for ill.
The challenge comes when, as is often the case, people come to these hospital or health settings with stories, life experiences, spiritual crises, grief, loneliness, trauma, identity crises … when people are distressed (or causing others distress/confusion) and someone is seeking help. I feel like the system has been set up to identify the ‘problem’ and address it. That makes sense, but what if we changed our focus from identifying/treating to understanding and being with the person as we try and figure out how we got here and what might be useful. What if we could deal with immediate needs (safety, housing, sleep, food …) without then going down a conveyer belt towards one diagnosis or another.
In the mental health system in england, I have noticed (as a worker) that there is an idea that some people have a mental health problem and some don’t … that they might have a social issue that is causing them distress, but not a mental health problem. This seems to underscore that we are acting as if mental health issues are solid entities … things that we can detect through talking with someone. I really think this line is problematic. It means some people in high levels of distress don’t meet the threshold for support. It also frames some experiences (including hearing certain types of voices) as problematic whether or not the person is struggling with them.
There is not so much room for other understandings, curiosity and taking our time to make sense of things. It might help everything feel very solid and understandable in the short term, but it doesn’t feel fit for purpose in the longer term much of the time. Having an awareness of physical causes of voices (e.g. temporal lobe epilepsy) is crucial, but that could be accomplished by a medical point of view being alongside others as equals. At the moment, it’s quite dominant and the others are more like invited guests.
Tehseen: I really appreciate Rai’s thoughts on this. I’d add that ‘taking time’ is costly, given the way the medical system is set up. Also, under the mental health act, treatment teams are led by the ‘Responsible Clinician’, who is very likely to be a psychiatrist with a largely medical model-training, which partly explains why the different approaches are not considered equal.
2. What is a narrative about hearing voices and seeing visions you don’t usually see, but would like others to experience more?
Rai: Hmmmm …. Voices and visions just being an average everyday part of someone’s life. Not making them special. Not making them tragic. Just someone who is going about their usual stuff and the voices/visions aren’t the punchline. E.g. a plumber having occasional chats with his voices as s/he’s fixing something.
Tehseen: I like the idea of it being more acceptable that voices might speak about collective phenomena – e.g. shared voices and visions that speak to a wider social, political, economic moment.
3. How does self-expression and art change lives of voice-hearers?
Rai: I don’t know about others, but for me it helped me communicate things that I didn’t have words for. Even calling ‘voices’ ‘voices’ doesn’t quite capture the experience for me. Art doesn’t have to stick to conventions and sense … I can make things without thinking them through first and do logic-edits. When I speak, I self-censor a lot because I am trying to make sense to others. Art doesn’t require that of me.
Tehseen: I love what you say Rai – I know someone who does elaborate doodles in dialogue with their voices, and they can’t make a ‘mistake’. It’s just the next iteration of the pattern! The verbal is so often (though not always) coopted by conventions of language, whereas the non-verbal can provoke mind and body differently, including leading to new verbalizations. Body-based (somatic) practices (including explicitly therapeutic ones) are proliferating right now.
4. What is the word you use to describe yourself? Voice-hearer? Schizophrenic? Person with schizophrenia? Person with another disorder? Psychotic? Or do you prioritise a different aspect of yourself first?
Rai: Hi, i’m Rai. I often describe myself as a survivor. I sometimes use the term ‘voice-hearer’ because I’ve learnt it and it’s a positive identity for me (in contrast to Rai the ‘schizophrenic’ – something I would have said a long time ago). It’s about being part of a movement. The issue is voice-hearing is just one part of a complex experience, so I don’t really prefer to focus on it in exclusion of everything else. But it’s situational. At my child’d nursery I am a ‘mum’ first. In a gig I’m a singer/songwriter. Being someone who hears voices, sees visions and has a whole host of other sensory experiences and beliefs, and being a survivor, is a huge part of my identity though. Even more now as it’s also a giant part of my working life.
Jess: Watching back the recording, I was struck how I described myself as ‘an honorary voice hearer’ as well as my identification more with being a family member of someone caught up in the system. I allow less space for myself as someone who has also experienced some of these things but doesn’t position themselves as qualifying ‘properly’ as a voice-hearer. It’s interesting because in the HVN movement, we want to disrupt some of these binaries. Yet I also want to sit back and allow those that identify fully as voice-hearers to speak, take up space and not be crowded out by those like me who teeter on the edge. I’m not really sure where I fall, I identify as family member, experiencer of extreme distress with some unusual (to others) sensory phenomena, and practitioner. It’s multifaceted and this movement allows for some of this complexity.
Rai: I love that you opened up this aspect to the conversation, Jess. It’s so important that we get the opportunity to query these labels and their implications for ourselves and others. When labels become acknowledged or accepted by lots of people, they take on meanings that we might not agree with .. our own relationship to that label might get covered up/lost in what others agree it to be. To me, voice-hearer is a statement of belonging and accepting parts of my experience that I used to hide … but it’s got political aspects, and carries a sense of power in certain circumstances (and invalidation in others). Yet – given so many of us have times when he hear voices or see visions … when do we get to use that label legitimately? Is someone who used to hear voices still able to use the label ‘voice-hearer’? Personally, I hope we can create spaces where people are invited to use whatever language they want to describe themselves. It’s not easy, though – as humans we seem to gather together and create groups where some experiences ‘count’ and others less so. I hope we can keep resisting this and be welcoming and flexible.
5. Do you believe in chemical imbalance theory offering voices? Or do you believe it to be a response to trauma? Do you consider it spiritual?
Rai: I don’t know what to believe to be honest. I think there are many different reasons people come to hear voices, see visions or have other sensory experiences. Focusing on just one layer of that seems unhelpful … it excludes the person’s own perspective (which for me is always the most important). I imagine that even within one person there are multiple ways of seeing what causes voices … so within us all there’s a whole smorgasbord of ideas and reasons.
My issue with the chemical imbalance theory is that it’s seductive … it suggests that something is out of balance and frames medication as the obvious choice to balance things out again. Not only have psychiatrists gone on the record to say that the terminology ‘chemical imbalance’ was promoted by the pharmaceutical companies – not medical professionals – it is unsupported by research. There are bound to be neurochemicals (brain chemicals) involved in voice-hearing (they are involved in everything we see, hear, sense and think). Yet, cause and effect can be hard to untangle and we’re still taking baby steps into understanding the working of the brain. Because this is such an easy image to get a hold of, it tends to squeeze out other ideas and beliefs. I think, in psychological circles, the idea of voices as resulting from trauma is similarly persuasive. It chimes with lots of theoretical understandings. It also fits with lots of our lived experience (trauma is part of my beliefs about my voices). Yet it’s easy for us to focus on that and exclude other layers/perspectives/options. This openness is what HVN is all about, to me. Creating space for people to make sense of their own experiences in their own way in their own time.
Tehseen: I agree with Rai. The history of psychiatry since the emergence of the 1950s ‘lock and key’ understanding of brain chemical action is littered with failures to pin diagnostic symptoms and categories on imbalances of a range of brain chemicals. I think it’s important to note that moving away from chemical imbalance theories does not necessarily mean a weakening of a biomedical authority or a pluralisation of knowledges. We may simply see other explanations may replace ‘chemical imbalance’ as dominant biomedical paradigms (e.g. based on computational approaches or certain ideas of how ‘trauma gets under the skin’). I appreciated Caroline’s point in our conversation that she prefers to talk about ‘context’.
With regards to spiritual explanations, in more secular societies there can be a lack of resources for understanding voices this way. A growing number of people raised without religious or spiritual frameworks are learning about, and adapting, spiritual traditions from around the world, past and present, in order to describe, explain and work with voices they hear. Others are turning to their own ancestors’ spiritualities. This of course raises questions of cultural appropriation. At the same time, traditions have never been static.
Rai: The idea of being wary of biomedical authority rings true for me, Tehs. I see, in discussions, more and more of my biomedically minded colleagues distance themselves from the ‘chemical imbalance’ theory … it is being increasingly positioned as a ‘straw man’ argument, which is then used to discredit those of us who challenge it as not understanding how things really work in their field. Opening up space for other perspectives, whilst also keeping space for the body and the biomedical, is a challenge sometimes!
6. All the people in the film seem to be strong confident individuals, do you ever find hearing voices people are held back by familial relationships?
Rai: I think it’s easy to see those on film or speaking out as being confident and strong … we put our best foot forward when we’re out there on the stage (and so many people look at us and go ‘i could NOT do that’). I cannot speak for the participants of the film, but I know that I’m not as strong as I may seem … like everyone, I’m finding my way through and you don’t tend to see me when I’m hiding under my duvet or unable to speak in sentences when I’m overwhelmed. We’ve got a way to go in showing the diversity of our experiences … including the less camera friendly ones (but given that the media has been saturated by tragedy and dangerousness when it comes to hearing voices, we’ve got a long way to go to counter this image too). I think, when we’re able to show ourselves in all our complexity on screen it will be a sign that society has changed enough to make it safe to be ourselves.
In terms of being held back by familial relationships … I think we can be held back by all kinds of things. Rather than thinking about how people can come to live with the voices they hear/visions they see (even when say frightening things), it can be more helpful to think about what stops people doing this. In my experience there’s a mix – prejudice, discrimination, abuse, bullying, poverty …. Having to expend all your energy on just getting through the day intact, lack of support, isolation, victimisation, being told that you’re worth nothing ….. And so much more. For some, difficult or abusive family relationships can be part of that. Sometimes it’s friends, or others in their life. For me, I think it was the messages I internalised through my experiences of trauma that were my biggest challenge (and how this interacted with the messages I was getting from the mental health system as a patient). Consequently, finding an environment (a Hearing Voices Group) that helped me begin to feel accepted by peers (warts and all) was fundamental.
7. What is the one thing that makes you feel proud being a voice-hearer / being involved with voice-hearers? Share some good moments!
Tehseen: As an ally to the hearing voices movement, I have found the large meetings and conferences glorious – full of passionate storytellers and cutting-edge researcher-activists. It makes it clear how central shared experiential knowledge is to rich understandings of voice-hearing, as well as much larger questions about the human condition and world we live in!
Rai: So so so many things. On a personal level, I figure I kind of have an interesting life. I wrote, once, ‘Don’t Pity Me, Psychosis Gave Me Mad Skills’ (which isn’t about voice-hearing per se, but is countering some of the negativity people expect me to talk about). Mentioning a proudest moment kinda puts me in conflict with my voices (as if I choose one, what about the others) so I’ll side-step that. As part of the movement (and someone who works with others who hear voices or see visions etc), it’s hard to name just one. The moment someone dares to open up about experiences that have previously caused them shame – and the listeners really try to hear them and be with them through the process; the humour; the way people from all different walks of life and backgrounds can find a way to be with each other; the way my husband once met someone at a Hearing Voices Congress social event that he thought was cool (and had been chatting to for a while) only to assume he was a voice-hearer (when he was, in fact, a psychiatrist). Lots of topsy turvy things … lots of essentially human things. Little conversations, acts of kindness and generosity – and so much strength (even when people, themselves, feel weak … I see such grittiness in keeping going, or even in managing to stand still, when times are tough).
8. What is the most profound thing you heard at the meeting of Voice Hearing Network?
Rai: I don’t know. As I’m trying to answer it all of these thoughts and ideas get jumbled up – I’ve been to so many Hearing Voices Groups (peer support), trainings and congresses … how to choose just one? I think one of the most useful things I’ve heard is when someone comes along with a completely different understanding of voices to me – so different that it challenges my own assumptions. That’s profound because it reminds me that I have them, still. I’m human. I’ve still got work to do on being open and accepting others experiences … it’s always useful to get hit with that learning curve (especially as I’ve been around a while now).
On a more general level, it’s probably ‘just’ that no-matter who, what, where or when – the wish to build bridges with others and find connections seems to come out when we feel like we are going to be respected and heard. I’ve been in spaces where people from different religions, countries, backgrounds and political beliefs have been able to make space for each other. That, maybe, is the ultimate in profound (especially in these times where our tolerance is often strained.
9. Is now, with Covid19 lockdown, the time to develop online HVN groups and networks? And how do we get funding for these projects without compromising the ethos as has happened with some other aspects of the Survivor/Mad movement?
Rai: The first question that comes to mind is to think what it is I need funding for – and is it worth any compromise I might need to make? Online HVN groups could be done for free – for example, someone could get a Zoom account and have the first half of the group as one meeting, and the second as another (there’s a 40 minute limit on free accounts). Online, people bring their own refreshments and there’s no room hire or travel to be concerned about. Facilitators can be volunteers – either from the group (taking it in turn as a revolving ‘chair’) or a group that are interested in helping the group develop and are supporting it between them. See info on our HVN website for setting up groups and online groups.
But, in terms of funding the low cost nature of online groups can be really helpful. Some groups crowdfund (like HVN is for their forum). This enables ultimate flexibility as there is no single ‘funder’ with their own policies – however it’s good practice to check in with your funders and let them know you’ve used their money wisely. Sponsored events are also an option (I raised £1,000 for HVN a few years back by giving up alcohol for 6 months). There are all kinds of creative possibilities.
More traditional funding sources tend to require you to become a bona fide group – get a constitution and a management committee (and, sometimes, a bank account). There are lots of funders that are likely to give lots more space for your ethics – in fact it is these ethics that may be the selling point. Ideas include:
- NSUN’s Covid 19 Fund (up to £1000 for small user-led groups and organisations)
- Locality have published a list of Covid-19 funders (ones that offer small grants – e.g. £500 are likely to be the most flexible).
- Local small grants through the ‘Community Foundations’ Network
In my personal experience, as a project manager I’ve run Hearing Voices Approach projects that haven’t compromised on my ethics with quite big and popular funders … so I think there can be a bigger concern about interference than there is in reality. They tend to be most worried about safety (especially funders that specialise in working with children and young people), but that is probably something I figure we should be thinking about to. The trick, I think, is to not be led by the funding priorities or ‘likes’ of a particular pot of money, but design a project the way you (and your team/allies) think it should be. Make sure you’re offering something you feel is welcoming, respectful and has thought about how it will reduce the likelihood of stuff going wrong (and has a clear rationale). Then find funders.
10. How do you feel about ‘pseudo hallucinations’ of BPD? I personally think it’s a great disservice to label people’s experience that way
Tehseen: I’m not an expert but it strikes me as pseudo-science!? I don’t think it’s a helpful prefix when describing experiences. It stems from needing to define what counts as ‘real’ (and what doesn’t), in order that we can say that in pseudohallucinations people know their hallucinations are not real. But what counts as real, and how experiences can feel more and less real, or change their status in accordance with context and relations of power, suggests that simply categorizing certain experiences as real or not isn’t a good idea. It doesn’t convey anything about any meaning or distress involved. At the same time, as a way of describing experience the prefix ‘pseudo’ is dismissive.
Jess: A lot of the narrative around BPD falls under the bracket of out of control, attention-seeking, raging without due reason, manipulative individuals… To me the ‘pseudo-hallucinations’ ties in with that, it’s offensive. Your voices, visions etc aren’t really ‘hallucinations’, aren’t truly experienced as real, ‘you should snap out of it’. Using the HV approach – voices, other non-shared sensory experiences and strong beliefs – are not judged but accepted and explored relating to what they mean to the person. To separate some experiences into ‘fake experiences experienced fully as real’ (hallucinations) vs ‘fake experiences you know might not be happening’ (pseudo-hallucinations) seems nonsense to me, experiences may be equally distressing but separating them promotes a hierarchy of experience. I think focus should be on how this labelling affects people with this diagnosis AND how other people supporting them are then able to hear their experiences (family members, staff etc). Looking at the data of who is diagnosed with a personality disorder, gender comes into it. There’s lots written from a feminist, political viewpoint, questioning the validity of the diagnosis critiquing power differentials, which I find really interesting. Both Rachel Rowan Olive and Flick Grey do some really cool teaching/facilitating in this area.
Rai: Yup, what they said.
Adding to it, it can be useful to know that the idea of pseudohalluciantions (which i think is very much an offensive term, too) is that it’s diagnostically relevant. Those with psychosis, according to this outdated idea, will have ‘true hallucinations’ which they will feel are 100% real and are experienced outside of their head, and those with emotional issues (PTSD, ‘borderline personality disorder’ or anxiety related voices) will have ‘pseudohalluciantions’ that are experienced as inside their head and aren’t seen as fully ‘real’. It sounds simple, but it’s not. The research suggests that the location of the voices and their forum is not diagnostically relevant – put simply, you can’t diagnose someone based on where they hear their voices and and how they feel about them. What tends to happen, in practice, is that if someone hears voices and speaks about them in a way that worries other people (e.g. that they are aliens, or that someone famous is talking with them) then those voices are likely to be seen as psychotic. If someone believes their voices are related to their life experiences (e.g. trauma) and is able to talk about them in a way that fits into the professional’s understanding of trauma or anxiety – they are more likely to be seen as non-psychotic (or pseudohallucinations).
I have a mixture of voices that have been seen as true and pseudo hallucinations at the same time (impressive, eh?). When I first entered the mental health system as a patient all of my experiences were seen as true/psychotic. Then, for a while, I got labelled with BPD/EUPD and things wavered … pseudohallucinations was introduced occasionally. Then I had both diagnoses, and I had a mix. Now, I have no idea. I’ve stopped asking what they are classed as.
The point, I guess, is that labels and categories are only as useful as they are useful. In working with many teens seen as having ‘pseudohallucinations’, I’ve seen the devastating invalidation that this label can cause up close. I can’t see a practical use for it. I think we’d do better if we just moved on from it.
11. How does your relationship with Mad Pride influence your life?
Tehseen: I’m far less embarrassed to be me.
Jess: I echo Tehs and also add that I’m actually now proud of my own history and proud of having many mad people in my family, proud of this complexity. I now feel a sense of belonging that I’ve really struggled to find before. And I also feel super lucky that I get to make a living out of it! That being said, I’ve had some privileges in my life that has meant I’ve been able to do that. I feel lucky to have found people living proudly mad in my early teens, if not for that then things may have been very different for me now.
Rai: It gave me the opportunity to realise that it was OK to be proud (rather than feel hidden or ashamed). Interestingly, I don’t experience it as a mandate to be ‘out’ at all times (or be happy with all aspects of my experience). I’m proud of the diversity of those of us deemed as ‘mad’ … but I reserve the right to still not feel OK about some of my own stuff, and still want to develop/grow/change. Being proud doesn’t mean being static. It’s maybe a response to the public expectation that we should hide away. Also, it’s been great to go on a Mad Pride march in Belgrade (Serbia) – their first one. I can take so much of my existence for granted. I’m out – I can talk about my voices pretty much anywhere these days. Marching, proudly, alongside those who really can’t – that was really intense.
12. What is the one thing someone did to make you feel safe and seen as a voice-hearer?
Rai: hmmmm … I am not sure. It’s probably not something someone says, but how they say it that makes me feel safe and seen. Safety is something I struggle with a lot, so for me safety happens when someone isn’t too intrusive. I need people to be with me, but not poke around inside and claim my experiences. This is easier than it sounds. It’s about being interested, but recognising that it’s my experience and your a guest in it. If you’re a guest in my house you generally wouldn’t make yourself a drink, jump on to my sofa and start telling me about what the colour of my walls mean on a deep psychological level. You also probably wouldn’t pick fault and tell me that the noise from the neighbours really isn’t that bad. Hopefully (if you wanted a second invite) you’d check where it was OK to sit, you’d be gentle and look for cues for what’s OK and what’s not OK. You’d take your lead from me. It’s the same when I talk about voices – I’m happy if people ask permission to ask a question, and ask it with an awareness and acceptance that I might choose not to answer (and that this is completely OK). It’s when someone accepts that I’m going through what I’m going through right now, and that they’re there for me.
There’s an article I took part in the Metro that looks at this: How to talk with someone who is hearing voices.
13. What would you say to a young voice-hearer who is just coming to terms with their experiences and looking up to activists for support?
Rai: I always point young people and families in the direction of Voice Collective – Mind in Camden’s London-based UK-wide project for children, young people and those who support them (www.voicecollective.co.uk). They have lots of resources, multimedia, booklets, a forum, peer support groups, creative workshops and an email/phone support option. Connecting with peers (or at least knowing that there are some other young people out there) can be really helpful.
If they can’t get to a group in person, the online forums could be great. Voice Collective’s forum is for under 25s (https://forum.voicecollective.co.uk). HVN’s forum is open to people of any age (https://forum.hearing-voices.org).
In terms of what I’d say, I don’t know. It depends on the person. I guess I’d offer to share a bit of my own experiences if they are useful, and chat about them with theirs … because i’m not sure anyone needs any advice as such … I think the opportunity to have a regular everyday conversation with people about voices/visions is a huge deal and says more than any inspiring statement or suggestion I can give. Dammit, that means I’m giving a suggestion … seek out others with similar experiences (preferably HVN or Voice Collective, depending on your age) so you can link with others who can help you feel less alone. That goes for parents/carers/guardians too – they can feel alone, and it can really help to link with the same agencies (HVN or Voice Collective) to connect and make sense of it all.
Because an inspiring statement is kinda called for, I guess one thing I’d say is ‘you’re not alone …. Lots of people go through periods of hearing voices or seeing visions. For some, it’s temporary, for others it lasts a bit longer … for me, it’s been aaaaages. But, as difficult as things might be right now – there is some sense to be made of it, and there is some support out there). I’d probably signpost them to Voice Collective’s artwork too. I remember creating this with an awesome group of young people when I worked there (I drew the bunnies). It’s about finding connection and avoiding judgement.
14. Thank you so much for sharing this very thought-provoking film and sharing of yourselves. I wonder about the connections, similarities, and differences between the Hearing Voices Approach, the Open Dialogue approach, and the CBTp approach. Are they in conversation with each other, or do they each develop rather independently?
Tehseen: From a research perspective, it would be a really interesting study to compare the history of their origins and how they unfolded over time! I’d be surprised to find an experienced practitioner of one who is not really interested in the others, and thinking about how they might inform each other.
Rai: There are some big similarities, in my opinion, and some differences. I imagine that each approach has its own lore about how it ended up how it is. For example, some of the HVN lore is that the origins of CBT for Psychosis come from psychologists who went to early Hearing Voices Groups. That’s something I can see in CBT’s focus on the relationship between the person and the voices they hear … and later ‘third-wave’ CBT practices seem even more allied … taking into account the impact of trauma and emotions that we in the Hearing Voices Movement have been exploring for years. The big difference would be that it is the core of our approach to accept people’s definitions of their own experience, rather than a therapeutic tool/orientation to maintain alliance. That hints at ours being very much a ground up approach, developed by people with lived experience through the practice of peer support and our own journeys. CBTp has its roots in theory, and is taught to practitioners who then apply it in their work … there’s a different emphasis. However, CBT can be practiced in what I think is a very HVN-style way. HVN approach stuff can equally be practiced in a way that looks more like CBT (expert-led). We’re talking about people doing all of these approaches, and people vary in terms of the beliefs they bring to the work and the style of doing it.
In terms of Open Dialogue, i find this interesting as I’m also an Open Dialogue Practitioner. I was talking with Mia about this (one of the panelists) earlier this week. It’s a longer conversation than I have time to get into, but a similarity would be the explicit plurality … there is no single view of a situation or difficulty that is prioritised over the others. Both seek and generate polyphony … and both do not, in terms of the meetings themselves, have a particular aim or agenda. They are spaces where we trust that if we are present and listening,what needs to be said will be said. CBTp is more likely to have goals and homework – a structure.
Yet, Open Dialogue is an approach that grew from a Clinical Settings – settings where the clinicians were able to listen to the bits of their practice that left them uncomfortable and had the freedom and good sense to talk with clients about these things and slowly create practices, a service and a system of care that was much more ethically sound and equitable. Whilst there are approaches to working with voices within the HVN approach, peer support groups aren’t treatment. They are spaces – community spaces. They also involve a greater attention to what the voices say, and understanding voices than Open Dialogue tends to.
Yet, all of these approaches are evolving as new people with new ideas come in to them, and as people who have trained in one field go into another. Open Dialogue is changing as it has come into areas with strong survivor movements – for example. All have a space, I think, yet none are in themselves the single answer if someone is struggling.
15. What do you think is the most important ingredient in HVN groups, sense of belonging/solidarity, shared coping strategies, realising that other great people hear voices so maybe you must be OK too?
Rai: Pretty much all of those things … for me, also, becoming interested in others and recognising that everyone has a story (or many stories) were key. The practical opportunities they afforded me were crucial too. I had no social life, so group gatherings were key – and so were the friends I made.
16. How does your past impact your present day voices? Medical model does not work with trauma.
Rai: Hmmm … that question has a very long answer, but I’m going to try and keep it short(ish). The honest (and shortest) answer is that I don’t know. My life and my experiences are a bit like a tapestry or a piece of artwork – they have layers of understandings and the way I understand them is not static … it changes depending on my position or my situation. Any answer I give to this will be partial and I probably won’t agree with it when it’s published.
A longer answer (but still only scraping the surface): Some of my current voices are still very much linked to my past (or their past, depending on how we talk about it). Some are still frightened of things that were issues there (trauma) and when echoes of those events are part of my current life (e.g. in a TV program, or the way my husband puts his arm around me if I’m not paying attention) can freak these voices out so much that … for a moment … I/we are back in that feeling. It blurs the difference between past and present. Some are less concerned with the past, and seem fully attentive to the present (e.g. the three voices that narrate what I’m doing, and the way others may hurt me). However, I feel they are still responding to fears that grew in my past … that are still here in my present (because whilst I am very often with people, and am very often open to people, this comes with risks … they are protective, so my balance is to acknowledge them without letting their worries rule me). Gah. There’s a lot there.
In terms of the medical model not working with trauma, I’m not sure about that. I think what is meant by the medical model can get mixed up sometimes … whether it’s those who focus solely/mainly on the brain as the site of dsyfunction and relegate social/psychological stuff to barely significant factors, or medical in the truest (I think) of senses where a physician should take into account the whole of a person when considering what may be causing a particular difficulty. That is medicine in my eyes … I just rarely see it as I think the training of psychiatrists in England at least has prioritised certain aspects and ignored (or devalued) others. One of my ex-psychiatrists was lovely – but really struggled to link together trauma and what gets called psychosis. So my diagnosis changed between BPD and schizoaffective disorder each time, depending on what we talked about. It is terrible that we are training psychiatrists in this way, when I am also aware of a number of other psychiatrists who are extremely skilled, open and aware of the role of social adversity and trauma on people’s lives. There’s a continuum of awareness in the medical profession, but it shouldn’t be such a lottery.
17. How can I support service users that are struggling with hearing voices? We’ve discussed challenging them in the past when they’ve said unkind things and they have recognised that the statements aren’t accurate or true. I would like to feel more confident when supporting them.
Rai: This is a great question. As always, there’s no easy answer. A starting point, I think, is to check out the Understanding Voices website (https://understandingvoices.com) as it includes different approaches to voices as well as a really useful coping strategy section that includes info on what might help people. The Voice Collective website’s coping strategy section is always really helpful. You don’t need to be an expert, one thing that can be really handy is to offer people you work with the chance to explore what might be useful for them (maybe by looking through some of these sites) and then seeing how you can support them with it. Challenging is one idea, and can be great. Another one is accepting what the voice says, but then stating your own view (so you’re not arguing, you’re just adding a new perspective and strengthening your own view). There’s a whole host of ideas out there. You might also want to check out our Videos and Resources on the HVN website for extra ideas.
18. Does anyone know of help for my son in Tampa, FL? Only option here has been forced drugging, abuse, trauma for past five years. No help. He is now physically injured from hospitalisations and extreme traumas. We live in fear. No support. Fear of the system here. There is no compassion.
Rai: We’ve talked a bit about this since the film night via email, so here I’m just going to share a few resources that others may find useful if they are in a similar position.
The Hearing Voices Network in the USA sounds like a great starting point – www.hearingvoicesusa.org. They have a list of groups all over the country, and they are open to helping people set up new groups.
Western Mass RLC has a list of online groups and phone support that people may find helpful: http://www.westernmassrlc.org/hidden-community-happenings-fix/888-on-line-and-phone-supports-march-2020
If you can, find out whether there are any Certified Peer Support organisations or clubhouses (or any other approach which focuses on the social and has a more positive and less coercive vibe). Google can be your friend here – google ‘certified peer support’ and your state and see what comes up.
For parents, the things I often say (which is probably very hard to hear) is that it is sometimes very hard to know that there are approaches out there – but that your son/daughter either can’t access them or doesn’t want to. Yet I often see parents feeling completely overwhelmed through years of living on the edge and fighting for something they need to be there (but isn’t). I see parents that are traumatised and exhausted. The suggestion I tend to give is that it is so massively important that they find support for themselves – as things are. My fear, otherwise, is that they will burn out. We cannot guarantee what will happen in the future – whether someone will open up and try a group, or find another approach that works for them, or whether they won’t. We don’t even know what the best thing is for another person, if we’re honest. This is incredibly difficult, yet I do believe if we can find support for ourselves we sometimes see/find opportunities that we would otherwise be too tired to see or try (or the other person ends up doing something that we hadn’t expected). This isn’t a promise … but maybe an attempt at a rationale for taking care of ourselves first (if we need it).
19. Are there any groups for peer specialists – ways of better communicating with individuals who hear voices but have never experiences them their self?
Rai: There are plenty of trainings and spaces that people without experiences of voices would be welcome … including the Hearing Voices Congresses, Hearing Voices Approach trainings and more. I’d check out HVN USA (www.hearingvoicesusa.org), HVN England (www.hearing-voices.org) and Intervoice (www.intervoiceonline.org). ISPS US also does webinars that may be useful on this.
20. I am looking to try to start a Hearing Voices Group for my peer-led company in the United States. Do you offer trainings or online trainings for helping start groups?
Rai: One of Caroline’s jobs is to provide training on setting up and facilitating hearing voices groups. See: https://www.hearingvoicesusa.org/hvn-usa-trainings for more info. Within England, you can contact National Hearing Voices Network if you’re thinking of getting training for your area (http://www.hearing-voices.org/training/) or the London Hearing Voices Project if you’re looking to attend someone else’s training or train a couple of people (www.mindincamden.org.uk).
Also check out our info on starting a group. At HVN England we’re planning on releasing a new booklet for those wanting to set up and facilitate Hearing Voices Groups … join our mailing list (on our website) to keep up to date.
Thank you for your questions. We hope that some of our thoughts have been useful and given you a place to start.
Can You Help?
If you’d like to help us, we are seeking funds at the moment to help support people who hear voices (and their loved ones) through this crisis. If you could
As a user-led national charity who supports the development of these groups, we need your help to fund alternative support options for those who need and want them.
See our Just Giving page at: www.justgiving.com/campaign/hvn-covid19
- Fund an online support forum, in a secure platform that won’t be flooded with spam and people can feel safe enough to share what’s happening for them with the support of peer-volunteers (people who have been through it themselves). This will help people to build connections with others – even when we can’t meet in person. We have launched this, but need funds to keep it going (see: https://forum.hearing-voices.org)
- Create, print and distribute resources (newsletters, isolation-specific coping strategies, information and personal stories) that helps ensure those who do not use the internet are not forgotten and can stay connected.