meet me where i am
listening to insights into the mental health system
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preface: experiments in listening
In preface: experiments in listening, Eve confides the anxiety she experienced summarising her motivations for developing this project. She wonders aloud whether the sensation “…might be less an invidualised problem, or pathology, and more a response to the task itself, and the space, both beautiful and treacherous, that speaking truth to power opens out to us.” “Because the way we speak about distress matters,” she explains, describing how clinical decision-making about insight and mental capacity can lead to coercion, restraint and neglect, especially for racialised and minoritised people.
Eve recounts her original proposal to use collective listening as a means of revealing the insights of people receiving and providing mental healthcare. She describes some of the challenges she’s encountered leading the project over three years, during a global pandemic, and shares some of the questions that have occupied her mind, “What would happen if we created a listening space, together, to explore a multiplicity of subjective interpretations of insight? Can a construct that’s too often weaponised, be reclaimed?”
She wonders aloud whether listening is enough to counter injustice, and where these listening experiments might lead.
Transcript: preface – experiments in listening
prologue: paths toward a clearing
Eve reads the prologue she has authored with the project’s co-creators, developed with the aim of supporting our audience to navigate the contents of our audio book of listening experiments. Painting a picture of the listening space we’ve built together, we invite others to join us, and to hear us as we listen. “As you stay here a while, ask yourself what you need to feel safe enough to listen”, Eve reads, “Can you give it to yourself, or ask for it from others? Can you demand it? Reclaim it?”
This listening space belongs to us all, and we ask our audience, “How will you use it?”
Transcript: prologue – paths toward a clearing
chapter 1: endless battles
In chapter 1, 23-year-old Hattie, set up in a homemade recording studio in a cupboard, is introduced online by Eve to 25-year-old Helen, sat in her bedroom in Cambridge with her stuffed toy anglerfish Humphrey for moral support.
Helen, who’s recently learned she’s autistic after years of being misdiagnosed with a personality disorder, talks about her strained relationship with services, while Hattie describes losing trust in the system and making the painful decision to self-discharge. “There was just an… endless feeling that I was wasting their time. That the things I needed were so far beyond what they had the resources to provide… It just felt like a kind of endless battle to try and get the support that I needed”, says Hattie. “I really relate to what you say about it being an endless battle…it just feels like constant fighting the system. And you’re always fighting a losing battle”, agrees Helen.
Transcript: chapter 1 – endless battles
chapter 2: an impossible tightrope
In chapter 2, Hattie and Helen explore some of the challenges of being described by clinicians as having insight into their experiences. Helen explains that she has very good theoretical knowledge, “…technically I’ve got insight because I can sit there and recite all the facts and stuff”, but “…when it comes to actually applying it to myself, that’s where I have a lot more trouble.”
Hattie describes the power and the danger of differences of opinion about insight and capacity among patients and clinicians, while Helen visualises the gymnastics involved in trying to get support, “You feel like you’re walking this impossible tightrope where you can’t reach out for help because you’re seen as care-seeking, you can’t not reach out for help because then you’re seen as not engaging or resistant… you can’t have too much insight otherwise you’re trying to question everything. You can’t have too little insight. Well I say insight… what does it actually mean?”
Transcript: chapter 2 – an impossible tightrope
chapter 3: talking to a brick wall
In chapter 3, Helen shares the distress of being labelled as “care-seeking” by clinicians, told to “take responsibility” and denied care. “It’s like talking to a brick wall”, observes Hattie. “…You’re exactly right!” replies Helen, “…because you’re talking and it makes no difference.” Hattie describes the pain of falling through the gap between “…half the people being like, Oh you’re not ill enough, you don’t meet the criteria for this service. And then the other half being like, Oh no, you’re too mad, we can’t deal with you.”
The pair explore the lack of support for people with autism, the politics of the PD label and the lack of understanding among clinicians. “I think they need to have more insight to be honest,” says Helen. “Yeah I totally agree,” replies Hattie, “I think really often people sort of say, “reach out”, and I’m like, well have you ever tried to do that? Do you know how difficult it is?”
Transcript: chapter 3 – talking to a brick wall
chapter 4: a nonsense situation
In chapter 4, Eve travels to Hackney, East London, to meet Ninette. Sat together on Ninette’s hostel bed, with Eve’s microphone balanced between them, they explore Ninette’s devastating experience of being unjustly arrested and sectioned after calling the police for help in a domestic matter. “…I was so convinced after that experience, well that’s it, like literally that’s it Ninette. Life is Done. Maybe you’re just going to keep on going in and out of mental institutions as a result of trying to comprehend such a nonsense situation that shouldn’t have even occurred in the first place.”
Inspired to help others struggling with the impact of racism, distress and mental health difficulties, Ninette has become a peer worker in the NHS. She tells Eve, “Even in the darkest of situations, there’s always light… I’m super lucky because not only have I found work that is so nourishing for my mind, body and spirit, I’ve also learned a valuable lesson in that everything comes from love.”
Transcript: chapter 4 – a nonsense situation
chapter 5: sitting in the pain
In chapter 5, Ninette describes how racism on the part of the police led to her becoming criminalised and written off as “The Angry Black Woman Who’s Lost It”. She details the emotional toll of what happened to her, explores the healing potential of sitting in the pain and wonders whether more insight on the part of the police, and mental health professionals, could be a factor in tackling abuse and discrimination. She explains, “If they don’t work on changing it, then maybe we need to find a way of changing it ourselves… I really feel that there’s power in people. We have a lot more power than we think, when we stand together”. Thinking about what can be done to help others, she says, “…the greatest thing that we can do, in the type of work that we’re doing, is give someone time. Time, and your ear… Active listening is an art.”
Transcript: chapter 5 – sitting in the pain
chapter 6: playing the game
In chapter 6, Eve and Ninette reconnect after a week’s break. In Ninette’s mate Ryan’s recording booth at the Ridley Road Social Club in Hackney, East London, they explore the dangers of insight and the impact of power without responsibility.
Ninette recounts some of her conversations with people detained on an inpatient unit where she’s a peer worker. “The phrase that I think is most poignant is… I’m just playing the game,” she says, explaining that in order to be released patients mustn’t challenge clinicians’ interpretations of their distress. She reflects that she too played the game to a certain degree, and wonders why our differences can’t be celebrated. Ninette wants everyone to be comfortable “…in their own lane of weirdness”.
Transcript: chapter 6 – playing the game
chapter 7: losing it to find it
In chapter 7, Ninette shares with Eve her experience of a voluntary admission to a psychiatric hospital when the trauma from her arrest and detention became too much to bear. Ninette explains how she was unseen and unheard in her care, describing how the clinicians were “…having a conversation about me rather than with me,” and wondering aloud “…is it not on a par with the police that day?”
She describes how creativity, along with the right kind of listening support, has facilitated a process of self-discovery. Working to confront injustice within the NHS, she reflects, “It’s actually a really big deal for me that we’re able to sit here and do this. Especially knowing that I’ve got this capability within me when I feel like I’m not being heard to just switch off… Justice for me is actually giving people the space and the opportunity to talk openly and freely about things that have happened to them that are unjust.”
Transcript: chapter 7 – losing it to find it
chapter 8: me, myself and i
In chapter 8, Eve travels to South London to visit Florence, a pastor who is 52 years young. Sat on her bed, beside her altar and surrounded by religious posters, Florence shares with Eve the details of surviving an abusive relationship, going to prison for a crime she didn’t commit, being subject to abuse by a prison officer, and the racism-fuelled medical negligence that could have cost her life. Frustrated by the responses of mental health professionals, Florence explains, “…I’ve had enough of people telling me “I understand”… maybe because I’m Black, or maybe because I’m a woman, or maybe because they see me as somebody who is mentally deranged, they don’t want to talk, they just want to pass me onto the next person.”
Describing how the things she’s survived have resulted in a series of suicidal crises, she tells Eve, “…I thank God that I am alive, because I know so many people that did not even go through half of the things I went through and are no more… especially when you are going through it alone, with nobody to talk to, that is madness… now is just me, myself and I.”
Transcript: chapter 8 – me, myself and i
chapter 9: positive chaos
In chapter 9, Florence recounts her experiences of being disbelieved by medical professionals when trying to seek help. “Sometimes the doctor will look at the medical report and look at me. They don’t match up. But sometimes you just have to give people the benefit of doubt,” she explains.
Reflecting on a positive experience of seeking help during a suicidal crisis, she advises medical professionals, “Don’t collect everybody with suicidal thoughts together, throw everybody with a mental health case together. We went through different routes that led to that thing. Try and soften whatever is too hard.” Florence details a brief stay in Yarl’s Wood Immigration Removal Centre, and the experience of challenging racism in a South London hospital pharmacy. “I caused chaos there! She laughs, “It was not a negative chaos, but was a positive one… even white people were clapping!”
Transcript: chapter 9 – positive chaos
chapter 10: if you eat your broccoli
In chapter 10, Alex and Shan are introduced online by Eve. Both in their 30s, with over 20 years in the mental health system between them, Alex and Shan discuss the pressures imposed on them by professionals to pursue study and work. “In order for you to be recovered in their eyes, you have to meet very, very normative criteria of what you do with your time,” reflects Alex, explaining that as an autistic person, being coerced into work is “…a risk factor in and of itself.” Shan agrees, recounting an experience of being coerced into a work programme during a crisis.
The pair explore how they’ve responded to being told by professionals they have insight. “…At first I was like, “Oh yay I have insight! I’m a good patient,” Shan reflects, but then explains how clinicians weaponise the construct, particularly during conversations about medication. It’s an experience that’s familiar to Alex, who observes, “They’re one step away from saying, “As long as you eat your broccoli, you’ve got insight. If you don’t eat your broccoli, no insight for you”.”
Transcript: chapter 10 – if you eat your broccoli
chapter 11: knowing too much
In chapter 11, Alex and Shan delve deeper into their experiences of being misunderstood and unheard by mental health professionals. Shan, who identifies as multiple, explains, “…if I try to talk about multiplicity or plurality or dissociation… they just really don’t get it… not that I’m saying they have to believe me… but just to pay that courtesy of… trying to meet me where I am.” Alex agrees that good faith is really important, but a lot of the time it’s lacking, explaining it’s “like everything you do has to be some kind of delusion if you have these sets of symptoms.”
The pair share their frustrations with being labelled unwell in a sick world. “I don’t want to use the word gaslighting…” says Alex. “It effectively is, isn’t it?” replies Shan. They discuss the challenges of experiencing a fawn response as a trauma mechanism, particularly during interactions with clinicians, and the pain of being branded “difficult” for knowing too much. “I think I do have a reputation in my hospital as a bit of a shit stirrer”, confides Shan, but “What do you expect? […] You treat me like shit, I’m gonna fight back.”
Transcript: chapter 11 – knowing too much
chapter 12: the man behind the curtain
In chapter 12, Alex and Shan share their frustrations with hoop-jumping, the impenetrability of clinical language and the systemic challenges wrought by the construct of insight that play out in painful ways for minoritised people. “When I say, “lacks insight”… I’m having a personal response to that because that’s a big deal for me as an autistic person. I’ve had my autonomy denied to me so many times,” shares Alex, while Shan explains that being considered to have too much insight resulted in the denial of further psychological support.
Shan wishes psychiatrists in particular would acknowledge, “…This is a very nebulous field of medicine that we’re doing. And we don’t always know what we’re doing,” while Alex explains the importance of transparency during clinical decision-making and treatment. “There’s nothing in the literature to say you want a Wizard of Oz, man behind the curtain thing… if that is the case then I think it’s troublesome and I’m not very comfortable with it.”
Transcript: chapter 12 – the man behind the curtain
chapter 13: a low priority
In chapter 13, Shan paints her own interpretation of insight. “I don’t know whether it’s because I identify as multiple, or because my studies are rooted in anthropological disciplines, but when I say I have insight I’m able to step outside of myself, but be inside myself simultaneously.” Experiencing a crisis at the point of the recording, Shan explains that she is able to step outside of her body and bear witness to what’s happening inside. However, “That kind of insight gets me into trouble in the services, because they’re like, “Oh well, she understands that these are the voices and that they’re not real… But I’m like, “Yeah well I know that, but I don’t believe that is the problem. See, there’s believing and there’s knowing, and the two don’t line up for me.”
Shan describes how being read by clinicians as insightful results in her being deprioritised for treatment. Alex describes the impact of being disbelieved by a psychiatrist when reporting an experience of grooming, and the pair recount hurtful comments made by clinicians. “I’m very good at making complaints for big things, but when it’s those kind of microaggressions I find it really hard to stand up for myself and be assertive,” says Shan. Alex confides, “I really worry about what happens if I need to go back… what I’ll actually do with that awareness now.”
Transcript: chapter 13 – a low priority
chapter 14: a perfect storm
In chapter 14, Eve meets Sam, a clinician she’s invited to reflect on Hattie and Helen’s conversation, online. In her bedroom, surrounded by bubble wrap from the audio equipment Eve’s posted, Sam talks through what she’s heard. “I found myself thinking, how have we got to a place, or how have we not shifted from a place that we started in, where care is a battle? […] It really pains me that services seem designed… to strip people of [their] humanity.”
Sam describes how systemic dysfunction “gets pushed onto individual people rather than owned by the system… because if the system owns it, it kind of admits that it’s collapsing.” Sam tells Eve how a couple of years ago, she began to question whether she might be propping up a harmful system by working in it. “It was almost like a perfect storm”, she says, explaining that listening to survivor stories was a catalyst for committing herself to fight for change from the inside.
Transcript: chapter 14 – a perfect storm
chapter 15: pushing where it moves
In chapter 15, Eve tells Sam she’s curious about what it’s like to be openly critical of the system, while occupying a role within it. Sam explains how she’s often treading a fine line in her work, perhaps another impossible tightrope – albeit a safer one than the tightrope walked by Hattie and Helen. She details her frustrations with the systemic dysfunction she’s battling, saying, “I try not to just kind of shout… in the things I write, or in the interactions I have, even though a lot of the time what I want to do is shout… But actually I hope what I’m doing is pushing where it moves.”
Eve asks Sam what she’d say to Hattie and Helen, if she could speak to them directly. “…You’ve given me the opportunity to listen, and I’m thankful for that. And I’m thankful that that means it could be the start of a conversation. And it could help other people to have conversations,” replies Sam.
Transcript: chapter 15 – pushing where it moves
chapter 16: an icky feeling
In chapter 16, Eve travels out of London to meet an occupational therapist she invited to listen to Alex and Shan, Florence and Ninette. The occupational therapist, who has chosen to participate in the project anonymously, welcomes Eve into her barn, where the pair sit at a large wooden table to discuss the listening process. Sighing deeply, Anon reflects, “I don’t know whether this was a positive, my initial feeling was that this was a negative, I heard everything I expected to hear.”
The pair discuss the dangers of knowing too much, the risks of questioning clinical decision-making and how, in Anon’s words, “…we as the people who are working in that system never have to meet the person where they are, they have to come to us.” Anon confides the weaponisation of psychiatric diagnoses, and the insight construct, leaves her with an icky feeling. She tells Eve, “…it’s very unsettling. I think it’s most unsettling because I’m part of that system… Doing this is my way of trying to challenge some of those things.”
Transcript: chapter 16 – an icky feeling
chapter 17: the odd fish
In chapter 17, Eve listens to Anon describe some of the challenges of being an outlier in the system. Anon explains, “I probably was more so before, earlier in my career, and I got bitten for it. And I suffered for it, professionally. And so that makes it even more difficult to be the… person who’s challenging, to be the questioner.”
Anon describes the pain of swimming against the tide, her frustrations with the Mental Health Act review process, and the absurdity of the clinical language she’s immersed in on the wards. “We pathologise human emotion”, she says, “[it’s] one of the things I hate the most.” Sighing, she tells Eve, “I think there are so many incentives to keep things as they are… To admit that we’re getting things wrong, we have to be really brave.”
Transcript: chapter 17 – the odd fish
chapter 18: catch 22
In chapter 18, Anon describes how mental health professionals become institutionalised, explaining, “We get stuck in this way of speaking, and in this way of seeing people, and sometimes it’s really hard to break out of.” She reflects on Ninette’s experience of criminalisation, and the hostile language used by clinicians to describe what’s happening to individuals in distress.
Anon describes to Eve how clinicians seldom tolerate their patient’s anger or frustrations with the system, and details some of the power imbalances between patients and clinicians. “If somebody shouts at me it’s probably because of something they’ve gone through, either something I have done that’s made them annoyed, maybe they’ve misinterpreted something I’ve done, but we need to explore that… That conversation doesn’t happen. They’re just restricted even more… And it’s that catch 22,” she explains. Eve and Anon explore the power and politics of the construct of insight, with Anon concluding “…the way we use it is just so arbitrary, and meaningless! Nobody ever lacks insight. Their insight is just different. And will and may change.”
Transcript: chapter 18 – catch 22
chapter 19: what if i go?
In chapter 19, Anon describes how clinicians often conflate insight with wellness, to the detriment of their patients. She describes how clinicians’ judgements about patients, including how they should present during crises, endanger lives. She explains, “…you can show distress in many different ways. You don’t have to be bursting into tears every five minutes and screaming the place down. Distress can be much more subtle and much more insidious than that. But those are the ones that we miss.”
Anon wonders aloud about where she might be able to make the most change in the mental health system, describing experiences of working in research, and her frustrations with policy. She realises, “…[it’s] only just occurred to me whilst I’ve been talking, that if I… come out of the clinical world… and find a group of people who are challenging the system, is the system going to let me back again?”
Transcript: chapter 19 – what if i go?
chapter 20: snakes and ladders
In chapter 20, Eve meets Chloe, a consultant psychiatrist she’s invited to listen to Hattie and Helen, Ninette and Florence, Alex and Shan, online. Sat in her front room surrounded by work paraphernalia, with her ginger cat asleep on the sofa, Chloe explains, “I think we’ve developed a system of two polarised methods of harming people, essentially. And at the one end you’ve got excessive coercion, and at the other you’ve got exclusion.”
Reflecting on the themes of racism, misogyny, criminalisation, coercion, and a failure to safeguard the autonomy of patients, Chloe delves deeper into the metaphor, shared by a number of the co-creators, of playing the game. She reflects, “Psychiatry is a battleground… between clinicians and patients, for all sorts of reasons and in all sorts of ways. You know, it becomes something that we want to win. And something’s gone really wrong if that’s what psychiatry is.”
Transcript: chapter 20 – snakes and ladders
chapter 21: a prescription for psychiatry
In chapter 21, Eve and Chloe explore issues of power and privilege in both psychiatry and activism. Chloe explains how one of the greatest problems with psychiatry is “…thinking we can speak for everybody… and thinking that we do know better than everybody and know something about everybody.” Echoing her fellow co-creators, Chloe concludes, “…psychiatry doesn’t have insight”.
Eve asks Chloe to offer a prescription for psychiatry, and Chloe prescribes common sense. Eve wonders aloud whether it would be possible to put the construct of insight, as it stands, in the bin and start anew. Chloe wants to see a mental health system where “…approaches are tailored, where people aren’t punished for not fitting into the only boxes that we are prepared to provide […] but where things can be truly individualised.” Thinking about what advice she could offer to other psychiatrists frustrated with the system, she offers, “…not allowing yourself to be assimilated is important… being honest with your patients… and treating patients as an individual and speaking to them as humans.” She advises clinicians to pick their battles, and to fight them well and consistently. Perhaps these too will be endless battles.
Transcript: chapter 21 – a prescription for psychiatry
epilogue: resisting conclusion
Eve reads the epilogue she has authored with the project’s co-creators, developed with the aim of supporting our audience to defy simple, tidy, beginning-middle-end narratives, and to resist conclusion.
We’re curious about how our audience will use what they’ve heard. “Will you speak out against injustice? Become the odd fish? Cause positive chaos? Push where it moves? We thank our listeners for hearing us, and we ask, “How will you begin?”
Transcript: epilogue – resisting conclusion
Biographies
Eve Loren is an artist, writer and cultural producer with 12+ years’ documentary practice, including award-winning television programmes and work for film, theatre and cultural institutions. Eve spent six years managing survivor-led mental health services in hospitals, prisons, the community and online. Witnessing the catastrophic impacts of austerity, institutional racism, misogyny and discrimination in mental healthcare, she turned her practice towards collective listening as a means of examining power, privilege and injustice in the system. Eve has presented her work throughout the UK, in Europe and the USA, and has consulted internationally on the development of peer-led mental health services. Her current research and practice explores the rise of fascism and the criminalisation of distress in Britain, trauma, unspeakability and revolt. Her latest projects can be found at www.linktr.ee/Eve_Loren and you can follow her on Twitter @Eve_Loren_
Merlin Evans in an award-winning Medical Artist, Writer, Educator, Director of Drawn to Medicine and the founder of the online illustration school Inktuition. Merlin’s practice maps and draws the Anatomy of the Self – the stuff that makes us us. Not just the blood, bones and guts of classical medical textbooks but also the thoughts, emotions and memories that we house. Merlin sees drawing as an act of listening and is committed to using the arts to empower and advocate for patient testimony, placing it at the heart of healthcare service delivery.
Sam is a clinical psychologist working with young people and the systems around them.
Information for Researchers
Chapter Summaries written by Eve Loren.
