Not My Words, Not My Story – by Julia Buxton

One of the first things that struck me when I entered mental health services was how little interest staff took in me describing my experiences or how I felt. I couldn’t understand it, but workers only seemed to care if it had a bearing on their index of clinical symptoms. In relation to depression for instance, if I attempted to use other descriptors such as feeling sad, heavy, desolate, gloomy, or pointless, it was met with impatience. It all had to be about measuring my mood in numerical terms or reporting symptoms. I had to learn, and learn rapidly, to translate my experience into terminology the professionals used, one which was itself imposed upon them by their training and the system they worked within.

Instead of helping me develop an understanding of what I was going through, I was provided with standard explanations. My eating disorders were about ‘control’ because, of course, all eating disorders are about control. Suicide attempts were either ‘serious’ or a ‘cry for help’ – the latter category being particularly problematic as I might have intended to die, but hadn’t planned it carefully enough or, especially early on, didn’t have the requisite knowledge for it to be effective.

Over time, I learned it can sometimes be easier all round to go along with proffered interpretations. ‘Yes, that’s right,’ I’ve told a doctor on more than one occasion while receiving stitches for self-harm, ‘it was for a sense of relief’. In reality it was more about proving to myself that I exist, or a carefully negotiated compromise with the voice in my head that wants me to kill myself.

Yet such questions are clearly not asked out of genuine enquiry, but for the purposes of risk assessment paperwork. Giving that answer meant I could avoid waiting all night to be ‘fully assessed’ by over-stretched duty workers, before being sent home in the early morning, exhausted, even more dispirited, having missed my medication and feeling even worse.

To be in so much distress yet so disillusioned about others’ ability to understand or help you is bad enough, but it feels even worse that there are such limited lenses through which your experience will be filtered. Anything which doesn’t fit this is disregarded as simply irrelevant and superfluous. This focus is simplistic, reductionist and incredibly frustrating. It doesn’t just lead to important aspects being overlooked (after 20 years in services, I’ve only just been diagnosed with ASD), but it can alienate you from your own experiences. There is no opportunity to interpret things for yourself, create any meaning out of them, explain them to yourself, or discuss them with another person on a human level. They’re the experts, not you; they must know better.

Recently, I’ve found myself being encouraged to write a book and share ‘my story’. The problem is that by now I feel I’ve lost control of the narrative. I wouldn’t even know where to start. Since my first contact with services in 2001, both mental health professionals and other people with significant roles in my life have narrated my life in their terms. There have been so many instances of this, by so many different people, that it’s become hard to know what my own story is, let alone find my own language to tell it.

Most of these narratives placed limits on what I could expect from life. For example, when I was 17 years old, I was told I’d never go back into education. A couple of years later, my professor told me that all female poets commit suicide. When I spoke about wanting to have children, my mental health worker’s first response was to ask: ‘is that realistic?’ Her question implied that it wasn’t, and therefore I shouldn’t. At various points too, people have invoked for me the idea of the ‘success story’ or the ‘triumph over adversity’ narrative in the ‘fight’ against mental health. This is just as limiting – if there’s a recurrence of problems, there’s the bonus dimension of failure.

I’ll keep working on ways to try and articulate my messy reality, if only to myself. I urge mental health professionals to take every opportunity they can to encourage people to describe their experiences for themselves, in their own words, without having to translate them into the terms of the mental health system. By doing so, you might just allow them to feel like a human being whose experience is valid, meaningful, and part of their own story – not yours.

From Asylum magazine, Volume 30 No 2: Summer 2023

JSWEC Symposium abstract

This symposium was held at the JSWEC conference held at Strathclyde University on 15-16 June 2023

Symposium title
Restorative approaches to mental health system development.


Abstract
The neoliberal retreat from service provision has resulted in increasing levels of psychiatric neglect, as well as abuse in services, highlighted by recent public inquiries and media exposes. This has, inadvertently, opened up spaces for grassroots activists to begin to think about, and engage in, restorative-type practices. Such practices aim to bring together service users, survivors and refusers of services, with the staff who work/ed in them, to begin the work of healing the hurtful effects of experiences in the system.

Restorative approaches necessitate the creation of new spaces for conversations, listening and dialogue, outside the parameters of the current system.

In this workshop/symposium we outline four such initiatives. Operating on different timescales and in different kinds of spaces, all of them – through enabling people’s voices to be heard in the context of respectful listening – begin to bridge towards constructive alliances between workers, service users and survivors. They also all acknowledge that the categories or survivor and worker may sometimes overlap and that workers too may be damaged by systems, as well as the individuals receiving services.

• Critical and Creative Approaches to Mental Health Practice (CCrAMHP) is a mental health discussion group that has been meeting since 2011 in Lancaster. We introduct t
• Asylum magazine is a radical mental health magazine established in 1986 as the magazine for democratic psychiatry
• MadZines research is a three year, Wellcome funded, project based at the University of Central Lancashire in Preston.
• Hope in the Heart, based in Plymouth, enables people with lived experience of mental health services to communicate with service-providers, leaders and society through art and creativity.

Prevailing and historical harms are a profound impediment to the developing alliances between service users, survivors and social workers. This symposium will provide an opportunity to consider the implications of restorative approaches for social work education and practice1. Being the whole of you, seeing the whole of them: Critical and Creative Approaches to Mental Health Practice (CCrAMHP). Christina Cheney

This presentation is a contribution to the symposium: Restorative approaches and mental health system development: implications for social work. It will introduce the work of CCrAMHP, outline what it has in common with other restorative approaches and indicatehow it it is contributing to the development of mental health services.

“I’m starting to wish that I had never read a book!” Having recently qualified as a social worker, and started my first job, I found that much of my reading about social perspectives on mental health was difficult to apply in practice. It didn’t fit with the dominant ethos in mental health services. That email, sent in 2011, triggered the idea for what is now Critical and Creative Approaches to Mental Health Practice (CCrAMHP).

CCrAMHP is a group for all who are passionate about sustaining creative and critical practice in mental health, in situations that can feel constrained (hence our group name!). Meetings are open to service user/survivors, carers, mental health practitioners, students, educators, researchers and others with an interest in engaging in discussion and debate, reciprocal learning and support. Central to CCrAMHP’s ethos is that we each attend as an individual, ‘bringing the whole of us’, and not as a representative of a particular profession, group or organisation.

Through reading together, viewing films and getting into conversation we share critical and creative ideas and develop strategies for putting them into practice. .

2. Asylum, the Radical Mental Health Magazine and the Politics of Ambivalence. Hel Spandler.

This presentation is a contribution to the symposium: Restorative approaches and mental health system development: implications for social work. In the spring of 1986 Asylum, costing 50p but “Free to Inmates”, was launched. It continues as a forum for free debate, open to anyone with an interest in madness and distress. Asylum welcomes contributions from, and builds alliances between, service users or ex-users (or survivors), carers, and frontline mental health workers and students. Contributions can be anonymous.
This presentation will introduce the work of the magazine. It will show how – as a print-based publication, and one that acknowledges and explores the politics of ambivalence – Asylum complements other spaces for debate, such as those on social media.

The presentation will locate Asylum in relation to the emerging field of Mad Studies and recent research initiatives such as the Crafting Contetion project. It will show too how Asylum has been working in partnership with other related initiatives such as Critical and Creative Approaches to Mental Health Practice (CCrAMHP) and the Community for Holistic, Accessible, Rights Based Mental Health (CHARM) group in Greater Manchester, which campaign for more humane mental health services.

3. Crafting contention about mental health: MadZines as’ restorative objects’. Jill Anderson

This presentation is a contribution to the Symposium: Restorative approaches and mental health system development: implications for social work. It will introduce zines and the work of the ‘Crafting Contention’ (aka Madzines research) project. It will point to the value of zines, as ‘restorative objects’, in developing and enhancing mental health knowledge and practice.

Zines are not easy to define. They have been described as ‘noncommercial, nonprofessional, small-circulation magazines which their creators produce, publish and distribute by themselves’ (Duncombe, 2008).

Because they are often created, circulated and read by people who feel disaffected from mainstream society, zines can be a rich source of grassroots knowledge about marginalised experiences, conditions and identities. A zine can be about anything but there is a rich seam of health – including mental health – related zines.

Funded by Wellcome, and based at the University of Central Lancashire in Preston, we have over the past three years – been identifying, analysing and co-producing a diverse range of what we collectively refer to as MadZines.

We have been exploring the potential of MadZines to challenge prevailing psychological, psychiatric and medical understandings, diagnoses and treatments. To that end, we have been working with groups and individuals, both in community settings and in higher
education institutions.

We are particularly interested in the idea of MadZines as restorative objects, with the power to help to broker dialogue and reconciliation between mental health service users/survivors and people working in the mental health system, across professions and at all levels.

This presentation will be of interest to social work practitioners and students who are interested in creative and/or restorative practices in mental health. It will be of interest too to social work educators and students who would like to explore approaches to zine pedagogy.

4. Messages from the HeART: reconciliation through intentional creative communication. Tam Hart

This presentation is a contribution to the Symposium – Restorative approaches and mental health system development: implications for social work. It will introduce Messages from the HeART – a project of Hope in the HeART CIC – and show how it has been encouraging co-production and reconciliation between service-providers and experts by experience.

Relational practice involves prioritising relationships over systems. While those of us who are or have been service-users may have encountered some excellent, supportive services, we can often feel that providers – including social workers – fail to relate to us human-to-human, in a spirit of compassion and equity.

People who live through challenging times often emerge with a message that is asking to be communicated. Creativity can be an ideal channel for such communication which can aid our own personal development and healing. It can also inspire and inform service-providers, policy-makers, commissioners and leaders. Through bridging the divide between people providing and on the receiving end of services, and acknowledging harm, creative approaches can change the way in which services – including social work services – respond to others in need.

Messages from the HeART has provided a platform to address some of the issues faced by people with lived experience of mental ill-health and promote relational change, reconciliation and co-production in an innovative, interactive and creative way. The presentation will draw out the significance of this work.

This contribution will be of interest to social work practitioners with an interest in exploring restorative practices. It was also be of interest to social work educators (including service user and survivor educators) who, through the integration of lived experience and creative approaches, seek to enhance student learning.

Restorative Approaches to Mental Health Service Development

Resources to support the session at JSWEC 2023

Symposium Abstract

Origins of CCrAMHP

Developing our MadZine pedagogy

MadZine research Youtube channel – with Tam Martin Fowles’ zines and our zine run through

Tam’s blog on the MadZine research website.


Websites

CCrAMHP

Asylum Magazine

MadZine research

Hope in the Heart

International Mad Studies Journal


Reading

Letting Stories Breathe by Arthur Frank.

Notes from Underground by Stephen Duncombe