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Walking in the shoes of psychosis
Art and culture, Clinical, Psychosis and schizophrenia

Walking in the shoes of psychosis

Sally Marlow on a film which hands direction to people with psychosis.

01 March 2024

The Directors is a work by artist Marcus Coates, commissioned and produced by Artangel. In a series of five films named Anthony, Lucy, Marcus, Mark and Stephen, Coates is directed by people in various stages of recovery from psychosis to experience and portray the day-to-day of their lives, including visions, voices and hallucinations.

Artangel’s tagline is Extraordinary art, Unexpected places. They produced Inside, an exhibition of new commissions and existing artworks in HM Prison Reading, and Taryn Simon’s An Occupation of Loss, which took over a huge empty underground concrete space in north London to bring together laments and mourning from all over the world. In The Directors, this tradition continued:  it was originally staged at five locations across Pimlico in late Summer 2022, including a tower block, a shop and a curry house.

I became involved with the project following a chance meeting with Mariam Zulfiqar, Director of Artangel. When she heard I was based at the Institute of Psychiatry, Psychology and Neuroscience, she told me about Coates’ work, and we talked about whether we could bring it to a clinical and academic audience.

She sent me the films, and I was struck by their authenticity, both from the point of view of the visceral and raw experiences of psychosis portrayed, but also from the perspective of the artist Coates, who as he was being directed showed the all too common lack of understanding of the person without psychosis.

There was something in these films I couldn’t articulate – probably still can’t – which captured something I hadn’t seen anywhere in the psychosis literature about the phenomenology of psychosis and what it is like to live with psychosis day-to-day, minute-to-minute.

Coates’ practice on this project was as researcher-artist, and by handing over the direction totally to Anthony, Lucy, Marcus, Mark and Stephen, and following their every instruction, he walked in the shoes of others and forces the viewer to do the same. We know from the Time To Change mental health campaign that this is one of the most effective ways to change hearts and minds. 

Many meetings and much organisation later, in the week around World Mental Health Day 2023, we screened all five films in different locations at King’s College London, with discussions and events programmed around them.

All five films are remarkable in different ways, and cover a multitude of different themes, including surveillance, danger everywhere, somatic symptoms and co-morbidity (Stephen); hallucinations, stigma, public attitudes, shame (Marcus); carers, work and welfare, living in the real world (Anthony); adolescence, early identification and intervention, gender, hope (Lucy); and paranoid thoughts, grandiosity, violence (Mark). The films underscore how complex and individual psychosis and psychotic experiences are (see boxes for reviews of two of these films, Stephen and Marcus).

To understand the project from those participating in it I interviewed Marcus Coates; Michael Morris, who was co-director of Artangel when the project began and producer of the films; and two of the directors, Marcus Gordon and Lucy Dempster.

Coates told me he had been collaborating with psychiatrist Isabel Valli in the Department of Psychosis Studies at King’s, working on a project about imagination, in which Valli was providing clinical support for those taking part. She suggested Coates attend her clinics and talk to her patients.

At the time, there was no plan for the direction of the collaboration, and no clearly defined outputs – they worked together to see where the process led them. Morris and Artangel got involved, and Morris explained that initially there was no theme or budget template and that this is pretty standard for Artangel, who wants to begin their projects with conversations rather than limits. Coates initially envisaged a theatre piece, focusing on storytelling, but then lockdown happened and his thoughts turned to film. Morris and Coates continued to talk, to see what could be done.

As lockdown lifted, Coates was still working with Isabel Valli and her patients. He had been surprised to find that despite working for a couple of years, he continued to experience what he describes as a fundamental barrier in terms of relating to people having psychotic experiences, and was forced to confront his own stigma. His ideas for a project which would involve ‘radical empathy’ were beginning to take shape, and crystallised around finding a location which would bring meaning to the work – the Churchill Gardens Estate in Pimlico.   

Coates is very aware that there are ethical problems with telling other people’s stories, and that the danger with a work like The Directors was that the process would be seen as exploitative and extractive, or worse, could even actually be exploitative and extractive.

From the beginning, he spoke to people about the ethics of working with people with psychosis to create art, including the Conway Hall Ethics Society, and Professor Charles Fernyhough, Professor in the Department of Psychology at the University of Durham, and lead the ground-breaking and wide-ranging Hearing the Voice Project. He also worked with the charity Mind, which put out a call for people with lived experience of psychosis who might want to collaborate with him on a film-making project by revisiting their experiences but directing Coates to act them out. 

The people Coates ended up working with were all having some sort of treatment, but weren’t in the depths of their illness and had the agency to talk about their own hopes for the films. They all wanted to tell their story without restrictions, and conversations went on for a year while both sides built trust.

Artists aren’t bound by a code of conduct, ethical requirements or safeguarding protocols in the same way that clinicians and researchers are. It was a leap of faith for each of the five Directors to work with Coates, and potentially not safe for them.

I met all five during the screenings and conversations we held at the Institute of Psychiatry, Psychology and Neuroscience in October, and all said that the relationship had been built very slowly, and that the experience had been a very good one.

After the screenings, Marcus Gordon, Director of the film Marcus, told me more about what the experience had been like for him. I asked him how he would respond to those with concerns the process could have been exploitative. He told me that he joined the project not from a hospital ward, but willingly and freely, and that he made his own decisions about the project, stating ‘it’s not exploitative at all’.

His motivations for taking part were that he wanted to correct some of the misunderstandings people have about psychosis. He had experienced psychosis on a daily basis for 15 years, but now was in a better place and looking for opportunities to give something back – this seemed to him to be a unique opportunity. Watching the film now is still quite emotional for Gordon – he says it has an unnerving impact on him even though he’s seen it several times and some time has passed.

I also spoke to Lucy Dempster, Director of the film Lucy. Dempster was unusually young when she first experienced psychosis, only 13. She became aware of the project through her CAMHS psychiatrist and began talking to Marcus on Zoom. She felt it was important to talk about psychosis because she had met so many people who didn’t have any idea what psychosis was, or who had ideas, but they were wrong.

She didn’t start filming with Marcus until a couple of years later, when she was 17, turning 18. Her film is set in a flat, focused on a specific memory of sitting in her grandparents’ flat looking at photographs and wondering if they were even real.

For Dempster, it was really important that Coates understood psychosis. She had been free of symptoms for a couple of years, and although Coates never intended the project to be therapeutic, she felt that it was just that and that she got to tell her story and be listened to without judgement.

I am not a psychosis expert, but had a hunch that these films would be valuable for staff, students, people with lived experience, carers and the public. I wanted to test this. I worked on bringing The Directors to King’s with my colleague, Professor of Developmental Psychology Helen Fisher, whose research and teaching includes psychosis and psychotic symptoms.

In early February she incorporated one of the films into her teaching, evaluating its impact on the students. The evaluation wasn’t scientific, and what I’m about to say is generalising, but I do want to include it here because in some ways it was unsurprising – students’ understanding and compassion for people with psychosis increased after watching the film.

However, the students didn’t feel they would be more comfortable discussing psychosis with someone who had it. Stigma is one of the hard problems of psychosis. The students talked about putting their own safety first and the stereotypical association of violence with psychosis wasn’t broken.

You may have missed The Directors at Churchill Gardens and the subsequent screenings at King’s College London. However, the project is not something which has been and gone, nor is it something you can only see if you are part of King’s. Morris says that after the installation in Pimlico, he saw how moved people were, and this brought the realisation that the project could be developed.

Coates and Artangel started to work together again, this time to give The Directors an afterlife which they hope will take it way beyond what was initially envisaged. To maximise The Directors as a resource with utility beyond the artistic, they established a website, What’s Going On, named after a line from the film Marcus.

The website contains resources about psychosis, including the full films, and anyone can make a request to use them in an educational or public engagement project, all free of charge. If you are an educator, clinician or academic, they are well worth checking out.

Sally Marlow, PhD is Associate Dean for Impact, and Professor of Practice in Public Understanding of Mental Health Research, at the Institute of Psychiatry, Psychology and Neuroscience

 

The Directors: Stephen

This is a poignant exploration of a seemingly routine trip to the store, unveiling profound challenges faced by those living with paranoid psychosis to complete a task seemingly mundane to so many of us. The short film captures the struggles in Stephen’s journey, providing the viewer with a profound and raw view into the life of those living with psychosis.

The film explores the workings of Stephen’s thoughts, where even the simplest actions become Herculean tasks. Stephen’s internal monologue is saturated with overwhelming paranoid thoughts and vividly voiced to the audience throughout the film. For example, the constant need to ensure the safety of his surroundings, repeatedly checking switches, appliances and holes in the wall, paints a clear picture of the burdensome repetitive tasks needed before venturing outside.

Even the depiction of stepping outside becomes a symbolic climb up a steep hill, masterfully conveying Stephen’s psychological and emotional strain, leaving the viewer with empathy and a sense of deeper understanding of the degree of struggle faced by Stephen.

The film also allows the audience to reflect on the stereotypes surrounding mental health, specifically those living with paranoid psychosis, and their common misrepresentation as threatening individuals. Instead, we see Stephen’s fear of those around him, including loved ones, and how this leads to isolation and feelings of loneliness.

Overall, The Directors: Stephen is a testament to portraying the lived experience of mental health, shedding light on the often misunderstood struggles of those living with psychosis. The film invites reflection and empathy from the audience, leaving viewers feeling like they saw a glimpse of what life in Stephen’s shoes is like.

Reviewed by Carolin Oetzmann, Researcher and PhD Student, King’s College London 

The Directors: Marcus

This is an uncomfortable watch, with psychosis as a spectre departed from Marcus Gordon who has found a new home in Marcus Coates. Viewers endure an intense reliving of symptoms, with jarring immediacy and no room to shirk from empathy.

Following a screening at IoPPN, when Marcus Gordon joins a panel discussion, the film takes on new meaning for me. He talks about his life in the lead-up to a psychotic break, including a pre-existing mental health condition and drug use.

I imagine Marcus, a tall Black man, experiencing symptoms on a crowded bus. I’m reminded that mental health conditions happen in mind and body. I think of how social context shapes our experiences of illness and recovery.

The health inequalities faced by racialised communities in the UK remain stark. Compared to other ethnic groups, Black men are more likely to experience symptoms of psychosis. Experiencing racism has been linked to an increased likelihood of depression, hallucinations and post-traumatic stress.

There are plans to make the film an educational resource, towards efforts to destigmatise the condition and change practice. To address the uneasy tensions in understanding mental health, lived experience is a good place to start.

In recent years, there have been more creative expressions of mental ill-health as experienced by Black British boys and men, including Ryan Calais Cameron’s For Black Boys Who Have Considered Suicide When the Hue Gets Too Heavy, Dave’s Psychodrama, and Derek Owusu’s That Reminds Me.

Marcus also mentions growing up in a white family, an experience shared by thousands of Black children in the UK featured in books, films and media. All serve as reminders of how lived experience expressed through art creates broader understandings of mental health and the forces that shape it, in ways that are both illuminating and deeply moving.

Reviewed by Trudy Mensah, Impact Manager, ESRC Centre for Society and Mental Health

Photo: Still from The Directors: Marcus, courtesy of Artangel