Editorial – Remarkable Lives: the next steps

Citation

Carson, J. and Hurst, R. (2022), "Editorial – Remarkable Lives: the next steps", Mental Health and Social Inclusion, Vol. 26 No. 3, pp. 193-196. https://doi.org/10.1108/MHSI-08-2022-099

The concept of Remarkable Lives was not the first idea that came into my mind. Any readers of the journal Mental Health and Social Inclusion, who can remember when it was “A life in the Day” may recall the first series of papers I co-authored, which was called “Recovery Heroes”. The concept of Recovery Heroes was partly inspired by Patricia Deegan in her classic paper, “Recovery as a journey of the heart” (Deegan, 1996). Additional influences were the mental health activist Premila Trivedi and the heroic literature in storytelling (Carson et al, 2013, pp. 12–13). The five people to feature in that first series were Peter Chadwick, Matt Ward, Dolly Sen, Gordon McManus and Margaret Muir. Following this series, Liz Wakely and I produced a set of papers based on the lives of four Historical Recovery Heroes. These were Isaac Newton, Charles Darwin, Florence Nightingale and Winston Churchill. Our book Mental Health Recovery Heroes Past and Present (Davies et al, 2013), featured in addition Abraham Lincoln, Rufus May, Glenn Roberts, Stuart Baker-Brown, Emma Harding, Andrew Voyce, Peter Bullimore, Bose Dania, Augusto D. Mello and Michelle McNary. It was one of a trilogy of books on mental health recovery that I co-edited with people with lived experience around that time, the other two being Psychosis: Stories of Recovery and Hope (Cordle et al., 2011) and Communism to Schizophrenia and Beyond: One Man’s Long March to Recovery (McManus and Carson, 2012). Following these papers and books, I then started the Remarkable Lives series. These all had the same format. The individual told their story in around 1,000 words. I then asked a number of questions based on the story, along with a number of fixed questions that everyone was asked, e.g. on the role of hope and medication. I wrote the Abstract, a short Introduction and an equally short Conclusion. This was returned to the person featured for their approval. Next, I sent them to the Editor Rachel Perkins and if she liked them, I uploaded them to the journal site. Rachel never rejected a single paper. She loved every one of them.

As I look back, I am of course very proud of this series of papers. I was fortunate to work clinically with many of the people featured, to have met several in the course of my travels or to have taught them in the case of my students. I have always tried to get across a message that the only way to truly understand mental distress is to read the narrative accounts of those who experience these problems. For many years, I used to think I was the professional, separate from the person with lived experience. I was under the delusion that an alcohol addiction was not a mental health problem, even though it has always featured in the Diagnostic and Statistical Manual of the American Psychiatric Association (APA, 2013). Earlier this year, I decided to come out publicly about my problems with alcohol (Carson and Ogilvie, 2022). Professor Phil Barker once stated at a conference in Jersey that “We were all Jock Tamson’s bairns”. Fundamentally, we are all the same. There is, of course, more that unites us than divides us.

In many ways, I have been a bit of a maverick as a clinical psychologist and more lately as an academic psychologist. I believe in the concept of mental illness. I have worked very closely with people who have experienced schizophrenia, bipolar disorder, major depression and a range of clinical anxiety problems. While I trained under Professor Mary Boyle, I was never persuaded by her argument that the construct of schizophrenia was a “scientific delusion”, (Boyle, 1990). I never felt that cognitive behaviour therapy was a sufficient intervention on its own, but that we needed to take a longer-term perspective. I do feel we should have focused more on trying to create employment opportunities for people with severe mental health problems. Over the years, I have witnessed the closure of many day facilities that provided some structure and companionship for people, which were then replaced by a range of specialist teams like early intervention, home treatment, recovery and support. I agree to disagree about conditions like schizophrenia with my long-standing friend Peter Bullimore, amongst others.

Rachel Perkins has always been one of my own heroes. The opportunity to take over the editorship of Mental Health and Social Inclusion was too good to resist. I have been joined as co-editor by my colleague Dr Julie Prescott. Julie is much more modern in her approach and is a great believer in the potential for digital technologies to transform mental health care. We will provide an interesting balance. Given the extra duties that co-editorship would entail, I thought about handing over the Remarkable Lives series to Robert. While I knew Robert during his undergraduate studies, it was during lockdown that we established a writing partnership. Our initial task was to try and get his Final Year Research Project published. This proved to be a much harder task than we originally envisaged. Robert had other ideas for us to work on and he led on a joint paper called “Why did you choose to study Psychology?” (Hurst and Carson, 2021a, 2021b). This was our first introduction to the field of autoethnography (Bochner, 2011). In turn, I have introduced this approach to others (Voyce and Carson, 2020; Hopkinson et al., 2021).

The series Remarkable Lives is in excellent hands. Robert has reviewed all the previous student accounts (Hurst and Carson, 2021a, 2021b) and also the non-student accounts (Hurst et al., 2022). He is a man beyond his years and has a great interest in meaning and philosophy, which have become very neglected in mainstream Psychology. However, while I am letting go of the Remarkable Lives series, I will continue to work very closely with Robert and I will take a keen interest in how the series develops. My last contribution to the series is Paul Makin, in this issue. Robert will start his tenure with his feature on Khia Stacey in our next issue. While Rachel and Julie may have been happy to pass the mantle of the journal onto Julie Prescott and myself, in turn I am delighted that Robert has agreed to take on Remarkable Lives. Where it goes, I am not sure. I am not worried. I know it is in good hands.

Robert

As a student of Professor Carson, I was very much aware of his Remarkable Lives series. He was always keen to impress onto us students the importance of first-hand accounts in mental health. I think that this series is a fantastic way of sharing those stories. These accounts are so important to both the writer and the readers, to service users and to mental health professionals. If we apply the philosophy of the autoethnographic approach (Ellis and Bochner, 2000), these unique sharings of experience are a vital part of the academic ecosystem. We must make space for stories in our sphere. They inform, they educate, they liberate. They inspire.

While conducting a set of narrative reviews of the Remarkable Lives series (Hurst and Carson, 2021a, 2021b; Hurst et al., 2022), I was often overwhelmed by the accounts that I read (Hurst, 2021). Taking part in that project really showed me the power and importance of these stories. I was grateful to have become so familiar with all of these incredible accounts. To be asked to take the reigns as their curator is an honour. For, while I will be a co-author on these articles and serve as the series editor, I much prefer the word curator. I am taking these stories and putting them on display with the upmost care and respect.

We could, of course, publish the accounts as they are, without any input from me at all. This is what Schizophrenia Bulletin do with their first-hand accounts (Ponte, 2019). However, the question-and-answer section provides a chance to explore the story a little more with the writer. I get the opportunity to ask them questions that I find pertinent to their story, to mental health recovery and that the reader will be interested in. This way, we have the account itself, where the participants speak for themselves. We also have a brief interview, with specific and relevant aspects of their story being explored. I see this as the best of both worlds. Like the recovery college movement (McGregor et al., 2014), it allows for not just one-way teaching, but a dialogue – a conversation.

I appreciate the great deal of time and effort Jerome has put into curating this series so far. Not an awful lot will change with this handover. However, there are some values that I carry with me academically which will show themselves in the questions that I choose to ask, and the short paragraphs I will write at the top and tail of the articles. I am very much operating from the school of Positive Psychology. In particular, the view that Paul Wong takes in his “Positive Psychology 2.0” (Wong, 2011). We must appreciate and celebrate strengths and positive aspects of all things to do with the mind. We must also acknowledge the difficulties and struggles. In line with the recovery movement, I reject a purely medical model of psychology (Holloway, 2008). As part of this, I am very careful in the language that I choose to use. That is not to say I will always get it right. Rather, I will take caution to use correct terminology. Language contains an awful lot of power (Deegan, 1992). As such, I myself will not be using the term “mental illness”. The word illness has deeply negative connotations.

I have found the connectedness, hope, identity, meaning and empowerment (CHIME) framework of recovery (Leamy et al., 2011) to be very useful in understanding recovery narratives. Myself and Jerome have now proposed the C-CHIME framework (Carson and Hurst, 2021), adding creativity into the mix. I will be using the framework within my questions to the authors of this series. I also wish to understand how each of the writers experience recovery. As such, the first question I will ask is, “What does recovery mean for you”. Recovery being a tricky term to define, best described as a deeply personal (Anthony, 1993) journey, without any ultimate destination (Deegan, 1988), I want to know what each author’s own personal definition is.

Stories and the telling of them is deeply important to humans (Storr, 2019). In mental health recovery, it is something that has not always been afforded to those who have remarkable tales to tell. There are many more untold stories out there, waiting to be told. I am proud to have the chance to curate and share with you some of these stories. I, for one, cannot wait to read them.