Oscar Patton-Lyons explores how Madzines might revolutionise the provision of patient information in mental health services

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I first encountered zines at the BIGSPD conference in Glasgow. When I chatted to Hel Spandler at the Asylum magazine stall, they introduced me to Tam Martin-Fowles. We had a little discussion about zines, but I didn’t take much notice then as I was more interested in the Asylum magazines.

 

However, a few weeks later I attended a Lived Experience conference hosted by the Central & North West London (CNWL) NHS Trust . It was when I saw Tam’s table overflowing with tiny leaflets (mini zines) that I started to take notice. I attended the symposium facilitated by Tam and Hel in the afternoon where they discussed the power of MadZines to create a little bit of resistance by introducing radical ideas in the world of mental health.  Tam said that once you start making MadZines you may find it hard to stop. Devoid of any immediate ideas myself, I found it hard to fathom how someone could have multiple ideas to express to the point where they became addicted to creating art!  However, seeing and holding Tam’s Zines, listening to her reading a story from one of them in the symposium, and seeing her passion for the MadZines movement was contagious.

 

That evening, a work friend (Hannah) and I returned to my house, and decided, with my extensive collection of felt tip pens, to have a go at making some zines. We discussed what ideas we would like to express. A peer counselling session ensued as we considered our mental health journeys, and we found a way to openly discuss some tough and unique experiences and then paint them on paper and turn them into zines. Through writing, adding pictures and art, I found I could describe quite complex ideas and concepts. I really enjoyed the process and found satisfaction in sharing what could be quite tricky conversations to navigate.

 

I made a zine to try and illustrate the barriers to accessing mental health services and psychiatric help (‘Finding your way past the General Practitioner’).

 

Sometimes it feels like a being subject to a secret club of primary care practitioners who decide whether you get psychiatric support or not. I felt my suicidal feelings were weaponised against me and I had to repeat my desperation several times before my GP took me seriously. Making an actual suicide plan seemed to be the only way to open the gates to psychiatric care. Otherwise I was just offered different anti-depressants, at varying doses depending on the mood of the GP.

 

In another zine (‘United by Neurodiversity’) I used quotes from the Pocket Guide to Neurodiversity by Daniel Aherne to try and illustrate why I believe in the affirmative model (‘I am Autistic, I don’t have Autism.’ ‘I am Dyslexic, I don’t have dyslexia.’). This zine explains the different neurotypes, like Tourette’s, ADHD, Dyspraxia, Dyslexia, Dyscalculia, Irlen’s Syndrome, and ASD and tries to show how, despite their differences, society presents the people to whom they attach with similar challenges.

 

I used the zine to show how neurodivergent people can unite through challenging societal barriers, and demanding that society adapts to different neurotypes. Neurodivergent people often experience challenges with the sensory environment. However, this can be hard to describe.  It’s difficult to explain all of the facets and pros and cons of each neurotype. The zine tries to show how this is manifested through descriptions of both challenges and strengths related to specific neurotypes. It uses artistic interpretation to break down concepts and a narrative to explain them.

 

 

My zines are littered with facts amongst the drawings, which are there to make people think. It can create a unique impact on each person who reads it and they can take away from it what they need. One person might remember that Tourette’s is a Neurodivergent condition, another might remember that black women are the most undiagnosed population of neurodivergent people. Another might remember the swirls and chaos of the ADHD page, and relate that to someone in their workplace who is struggling to manage their ADHD in an environment not suited to them.

 

I made another zine (‘Do Jars needs labels’) to explore my complex thoughts and questions about identity and diagnoses. I had just attended two sessions at the BIGSPD conference – one on the importance of diagnosis in creating interventions for psychiatry teams, and the other immediately afterwards about how useless, stigmatising and unhelpful diagnoses can be. It made me think, how useful is a diagnosis? This zine poses that question through the metaphor ‘Do Jars Need Labels?’. I present a series of jars as individual identities and ask readers to consider questions about whether it is useful to label the jars or not.

Another zine (‘Are stigma and discrimination the same?’) explored the difference between stigma and discrimination. I had come across the idea that stigma, as it is rooted in the notion of stigmata, puts the onus of the responsibility on the individual to change or hide aspects of themselves because of shame. But I feel discriminated against, not ashamed. So, I asked: when you use the word stigma, do you mean self-stigma, an individual feeling shame and a need to change or hide themselves, or do you mean discrimination, that the person is unfairly treated in society because of their diagnosis or identity? I wanted to suggest that society should do more to adapt to individuals with mental health conditions and create environments for us to thrive.

 

 

 

My friend Hannah created a zine to try and illustrate what it’s like to have your privacy invaded when on a psychiatric ward. She had been on an inpatient ward, suffering with psychosis and experienced her rights being stripped and her privacy dissolved. She would be checked, on observations, every 15 minutes, and clinicians would open the window in her door to peek in, and she felt humiliated when undressing or using the toilet. The zine makes you think how helpless you’d feel if you lost all your rights to privacy. This is something I too often see, working within in-patient settings for people suffering from mental health challenges and distress. These taboo topics are not talked about enough. Myself and other colleagues have used this an opportunity to help educate people from a peer perspective.

 

I am lucky to work as a lived experience practitioner in the NHS, and I now take my newly painted zines in to work to show mental health teams. I work across many sites and intend to show them to doctors, psychologists, art therapists, and service users. I am lucky that I work in a trust that is implementing trauma-informed care, and trying to create a strong peer workforce. This helps me feel safe to critique and question the way things are.

 

I am training to be a reflective practice consultant within the NHS and I attend many meetings with well-established group analysts and therapists. Whenever I ask them what they think is the most powerful tool for helping people to reflect, they always say ‘metaphor’. For me, zines are that style of communicating – visual representations of feelings so hard to describe, and experiences so hard to communicate or emote.

 

You can use zines to break down big complex concepts and turn them into something palatable and understandable. Zines are like metaphors because you can use them to represent or symbolise something else you’re trying to express. You can communicate ideas, information, concepts, and experiences without the need for words and create an impact in the minds of others. The images and art can help the reader empathise with the person making the zine and it can help them understand their viewpoints. Not everyone will agree with what they see, and that can spark conversation, and create more mutuality and understanding between people.

 

Myself and Hannah have also started collecting leaflets to translate them into zines to leave in clinical areas, waiting rooms, and drug leaflet stands. We want to enable people to have access to alternatives to the leaflets and booklets you often get in services. For example, instead of the lengthy drug leaflets patients often receive, or the policies you have to read in in-patient settings, people could receive a peer-led zine with information a fellow service user wants to tell you. Not corporatized, but anti-corporatized. Something unique to every service. Not agreed upon by a board of directors, not from the world of corporate meetings, and risk-averse responsible executives.  And not clinical but, instead, from the perspective of individuals with real experiences in the services.

 

You can’t interrupt zines, or disagree with them, they are just a person’s perspective for others to read. Like art, zines ares subjective, and everyone feels slightly different reading them. I aim to take actual clinical knowledge, combined with a peer-led attitude, and my own experiences, to create more palatable psychoeducation to help individuals navigate their way through services. I hope this will help to combat the corporate, bureaucratic and risk-averse responses individuals receive in healthcare settings.

 

So far, it has felt cathartic, touching, affirming, and empowering to share my stories, values, opinions, and experiences of mental health with the world. Seeing the lightbulb switch on in somebody’s head when they discover a new way of thinking about mental health. Watching clinical professionals be taken aback at the perspective they realise that  they have missed. To watch people read my zines  and nod their heads as they tell you how they share similar experiences. For example, my ‘Finding your way past the general practitioner’ zine resonated with individuals who have had severe depression, and painful crises, but just could not be taken seriously by their GP.

 

Making Madzines has helped me to communicate the complexity of my experiences that other people seem to find so hard to understand. Whether that be my experience of stigma and discrimination, or my challenges as a neurodivergent person being different to a physically disabled person, but similar to someone who is dyslexic. It’s been a place to be both socially disruptive and constructive on the same piece of paper.

 

The MadZines have received a warm response from the people I have shown them to. People have found them relatable and a catalyst for introspection. Patients have expressed delight in the zines’ engaging and informative content, highlighting the fun and accessible way they present information. This alternative avenue for distributing health information has fostered a culture of inclusivity, appealing to diverse learning styles and preferences. While the evidence of their impact is only anecdotal for now, the stories of their helpfulness and the refreshing perspective they offer are promising.

 

I was fortunate to attend the Madzines symposium at the Lived Experience conference last summer, and I think the peer workforce’s enthusiasm for MadZines underscores the medium’s ability to resonate with and empower those within the mental health community. This suggests a bright future for creative tools in patient care and professional development.

 

Zines have changed my perspective on the world and its given me tools to look differently at information provided by services. I am now forever looking out for new narratives, stories, or information I can describe through the medium of MadZines. My next idea is to use zines to critically assess whether the information provided in services is doing its job properly, and give people the tools to think about whether their service is sharing the correct information with them. I plan to use the compelling nature of zines to demystify and destigmatize mental health issues, and explore the treatment and experiences of individuals in the mental health system.

 

Looking ahead, I think the MadZines initiative could revolutionise patient and staff engagement within the NHS. I’m considering how to collaborate with mental health professionals to explore the therapeutic potentials of zine-making in various treatment settings. Additionally, I plan to get some structured feedback and research to validate and potentially integrate them into the NHS’s patient care strategies.

 

The journey of MadZines is just beginning, and their evolving role could mark a significant step towards a more empathetic, inclusive, and expressive healthcare environment.

This is the kind of inspiration the MadZines movement can create.