Blog reports following Storytelling for Health 2 International Conference
It was a joy to attend The Storytelling for Health II Conference, an inspirational conference of connection and healing. The programme was beautifully put together with sensitivity, Pru and Emily creating a space of sharing that enabled honest conversations, connection and insights. Using Open Space Technology we found ourselves going to the places that we needed to be, and therefore having the conversations that we needed to have with the right people. This dynamic enabled me to listen to myself and my needs, to immerse myself in the stories of others without restriction and participate in conversations. The conference began with opening presentations of sincerity and passion for Storytelling. Tracy Mahill embodied the importance of openness and the power of connection when sharing her story. Emily Underwood shared her experience of storytelling and her need to take control and shape her identity through performance: ‘by telling our story we take control of our narrative ‘ Their openness and integrity in sharing their stories immediately created an atmosphere of warmth, I felt like I had ‘come home.’ Throughout the two days I listened to stories, heard presentations, participated in workshops and learnt. I thought about how we tell our stories, why we tell them and who we tell them to; I reflected on the process of storytelling and the importance of personal safety and responsibilities; I considered consent and confidentiality; I saw how stories can be used in research and ethics governance, as an evidence base for improving practice. What underpinned the conference though was connection. It was explicit that Storytelling is all about connection, connection with ourselves and connection with each other as human beings of feeling and complexity. My highlight of the conference was Beginnings/Birth, where I was given the opportunity to share my own experiences of healing through writing poetry, a process which has enabled me to return to my experiences of anorexia during pregnancies safely and explore my feelings. Tracy Evans presented on Birth Cafes, sharing stunning poetry that women in the cafes had written: ‘language is like a torch shining into the chaos of our unconscious inner life.’ We reflected on our bodies being the authors of our stories and the process of reclaiming lost and forgotten of selves, finding words to create new selves. I was grateful to be invited to participate in the panel discussion and contribute to the wider dialogue around Storytelling, exploring the healing and nourishing qualities of writing and sharing our stories. Storytelling is a way to bring greater insight into ourselves and each other, delegates shared how storytelling had being a way of rebuilding themselves and as gaining mastery over their experiences. I came away with renewed passion in the importance of telling and hearing stories, across sectors, organisations and individually. We shared our stories with the knowledge they were part of a bigger conversation, a conversation that valued experience rather than statistics. We experienced the importance of putting people at the centre of their care, to bring greater compassion to health care and the world that we live in. Without stories, connection and compassion we are lost. I look forward to the inevitable growth and recognition of storytelling, the emergence of more research and meeting again at Storytelling In Health III.
Kathryn Aldridge-Morris, presenter and participant
The Swansea Storytelling for Health 2 Conference was a heady and nourishing mix of participatory workshops, panel discussions, lectures and presentations by academics, artists and storytellers. The three days started with Heidi Dahlsveen’s exciting, experiential workshop Storytelling for Health. Heidi explained her artistic research process, which felt liberating and ground-breaking. Heidi describes how the impetus for her research comes from a ‘strong impulse’, and that she immerses herself in a landscape and there she uses her body and experience to generate a research question. We then did a three-minute free-write on the topic of storytelling and health, shared those in pairs and then a storytelling task, where the listeners bounced stories off each other, alluding to the interconnectedness of all of our stories and suggesting how listening to other’s experiences can be a springboard for our own creativity and self-understanding. It was the perfect start to a conference on storytelling… Indeed, during the first panel of PhD students, we were given the Arthur Frank quote, ‘Stories we tell are reconfigurations of other stories. Other stories are resources for us.’ I was personally struck by the phrase ‘biological disruption’ when things happen that aren’t how we imagine our life stories to be. Rachel Hawley was inspiring in her discussion about shifting from doing ‘to’ people, to ‘with’ people and rethinking relationships in the healthcare system, which resonated for me in particular. Ginny Topp, ‘not just a cancer patient, but a mad artist with a camera’ shared the process of creating her powerful film ‘Cut’ and this deepened my appreciation of Hannah Arendt’s quote that ‘All problems can be borne if you put them into a story.’ Joseph Sobel’s talk led us through the process of making stories out of the ‘inchoate crisis of cancer’ and the disparate parts of the conference felt like they were organically weaving themselves into a meaningful whole. The day ended with Kathryn Mannix’s lecture on the end of life. It was nothing short of transformational in its message that we’ve become unfamiliar with the process of normal dying, and was able to take me as a listener to a frightening place, without being frightening. I attended two participatory workshops on Saturday. The first was the brilliantly titled, and equally brilliantly delivered, ‘Breathlessness as narrative wreckage’ where we wrote and reflected on our letters to the breath, all of us holding stories of the breath in the body. The second was Lee Aspland’s beautiful introduction to Mindful Photography and took us out of the building in search of spots that were calling to us and that could tell a story or express our state of mind at that time. In between sessions, the conversations went deep quickly, and transpersonal connections were made between participants. These in-between bits felt just as nourishing as the programmed events and overall the whole event felt like a space had been created where people were held and heard. A wonderful conference – on a personal and a professional level. Thank you.
Rachel Taylor-Beales, singer-songwriter and socially engaged creative practitioner
I did not know what to expect from the International Storytelling for Health conference, and initially I wondered whether I was going to be a ‘lone’ freelance creative-practitioner in the mix, not being connected to a wider organisation in the arts and health field. Hearing the ethos of the festival at the beginning of the conference was reassuring. We were guided to engage in the sessions in a way that suited our personal needs and areas of interest. As the conference unfolded, I discovered that those attending and contributing had a broad and diverse range of experience and practices. As a performer I was pleased that there were opportunities to experience other artists work through varied styles of storytelling. My personal highlights included the performances from Devil’s Violin, Heidi Dahlsveen, Split Britches, Tenevous Choir and the conference Rap from Mendeep Singh. I also really enjoyed and benefitted from the Long Table discussion session with Split Britches. Other highlights included meeting a wide range of people and the interesting conversations that ensued.
As a patient currently in the care of the NHS, I found the conference to be helpful on a variety of levels. There were many opportunities for a broad range of patient voices to be expressed through the performances, talks, exhibitions, films and workshops. However, the conference was not solely limited to patient experiences but also offered stories from medical staff expressing their narratives. I was particularly encouraged by Tracy Myhill’s keynote talk about the approach to storytelling within the Swansea health board and very much hope that this work and approach will continue in Swansea and beyond. Having input from the health-board and medical practitioners alongside patient voices provided a helpful balance to engage with. The impact of combined patient and medical staff perspectives, was deeply humanising.
On reflection, the consolidating word that I am left with after the conference is ‘kindness’. This word struck and resonated with me during the Devil’s Violin opening performance ‘The Beast In Me’– and references to kindness (both indirect and direct) seemed to echo throughout sessions and subsequent talks, resounding in the gathering, listening to, connecting and engaging with stories from many perspectives. Contributors and attendees alike spoke of:
-Kindness providing opportunities to overcome boundaries and improve quality of life. -Kindness laying the foundations of compassion, empathy and understanding, needed to affirm and generate restorative communication between patient, carers, health-practitioners, staff and colleagues. -Kindness fostering an environment where brave acts of connection and sharing of experience can be acknowledged in meaningful ways. -Kindness of taking time to listen and receive, of reserving judgements, of offering dignity and humanity to those in a situation of suffering.
Ultimately, the underlying principle of kindness is an essential ingredient for all aspects of health and wellbeing. This principle underpinned much of the ethos and delivery of the story-telling approaches for health, throughout the conference.
Dr Kathryn Watson
I’m a doctor, visual artist and researcher, and I attended the Storytelling for Health 2 Conference in Swansea to present my work entitled ‘my illustrated mind’. This is a personal endeavour and is an evolving collection of illustrations, based on my experiences of mental illness and my journey through schema therapy (Instagram @myillustratedmind; Twitter @myillumind). The session I took part in centered around ‘The Patient’s Voice in Mental Health’. Much of this work was very interesting, in particular the group of three mental health nurses (Anne Marie Bollen, Kirsty Hill and Sylvia Dziewulska) who each spoke powerfully about their reasons for wanting to work in this area, including their experiences of people with these problems, both in and outside of clinical environments. In fact, I was incredibly moved by their words and how they spoke of one of their patients, who is diagnosed with borderline personality disorder. This meant that my talk, which followed theirs, was one of the most emotionally fuelled talks I have given to date – but I got through it! Plus, I received a warm reception and a significant degree of interest, which I was pleased about!
Other talks that stood out to me were the keynotes by Steven Blackburn and Carol Rhodes, and Pip Hardy and Tony Summer, who spoke about developing a new storytelling toolkit and the Patient Voices Programme, respectively. In the former talk, I was pleased to hear that patient involvement was included as part of this research. The ‘Hearing Patient Voices’ series of talks was also brilliant. A good range of diverse projects, with much to learn from. In particular: how Dr Rachael Hunter has drawn on her clinical and lived experience to improve the lives of people with multiple sclerosis; how Emma Barnard uses visual art to communicate the emotional distress of patients with ENT problems; and how Juping Yu and Gareth Parsons have harnessed the patients voice to enhance empathy in nursing. The discussions that followed these presentations were insightful and thought-provoking: What makes a story impactful? How best to capture stories? How do we give patients autonomy and power over their own stories? What can we learn from listening to patient stories?
I thoroughly enjoyed the conference, as I believe that there is so much to learn from the stories of those with lived experience. It was a great place to meet like-minded people, including clinicians who use art as part of their practice and artists, working within the medical field. I especially loved the Soul Relics Exhibition and the other pieces of art displayed alongside this. As a whole, the conference location, schedule and facilities were perfect and everyone was very helpful.
If I was to suggest an improvement, it would be to hear more of patient’s actual voices or to hear stories from the patients themselves. In addition, it would be great to hear more about research that ‘actively involves’ people with lived experience and about ‘co-produced’ research (see NIHR Involve: invo.org.uk).
Finally, many thanks to the conference organisers for providing me with the opportunity to be part of this experience and I look forward to seeing what the future holds
Well the day finally arrived and I'm off to Swansea to attend the story for health conference. I'm giving a short presentation on creative writing, wellbeing and will read my poem about the Welsh blanket that helped me see deeper into the pattern of things. The train pulls into Ferryside on the Towy estuary. In the shelter beside the track, an old tramp lies in a bundle of blankets, a spikey outcrop of white beard sticking up. I take this as some kind of special message for me, come on, I’m a poet, we do things like this. I spent many years as a drifter, it colours the way I see the world still.
I arrive just in time to hear the first of some Ph.D dissertations all of which come over with professional clarity and confidence. Lijiaozi Cheng says her body was invisible until She was ill. I like this idea very much and later she tells me it's an idea from phenomenology. The honesty of academics a, a poet would steal it with alacrity turning it so.... to make it slightly different. Already I'm thinking all this research, if only there were a more entertaining way of presenting it. Then came My main man like Mandeep Singh on about rapping with substance abusers and such. We hang, there is some crossover, don't forget the love and to make research practical, tangible, in the real world where people are searching for ways to empower themselves and look after their own health.
All on the bus, a woman tells me her husband took her for a week's holiday to Port Talbot, lot of industrial heritage there. Swansea waterfront museum exudes history, the first global city in the industrial revolution, coal, iron, copper, harbour, top hat, flat cap, chapels, Chartists and child labour. The volunteer stewards meet and it hits me what a massive weight of responsibility Prue and Emily are carrying. They explain the ethos of the conference, which is that everyone will find their way to where they need to be and get from the conference what they need to get. Which, in my case, is a more developed sense of agency that will direct me to contribute something of worth to the community I live in
Heidi Dahlsveen tells a story to the assembled folk in the evening. It is called Frigg lost her son and so did I. Her style is intimate and calm. It is a story of tragedy and loss. The Norse mythology and her own experience weave together, though the two threads are always identifiable. Myth and real life remain separate. On the anniversary of her son’s death she prays to the gods that the pain she feels will not be dimmed, as this is, for her, proof that he once lived. My brother was killed in a road accident when I was a baby and the story set me off on a long thought about recovering that event in our family.
In the hot travel-lodge room, sleep was evasive and the inconsolable seagulls owned the Swansea night.
Daniel Morden sets us off in conversation with a Idris Baker, a palliative care specialist, about breaking bad news of life threatening disease to a patient. Daniel has had this experience himself, having been diagnosed with a rare form of cancer. He doesn’t hold back on expressing his anger and distress. For him there is no right way to be told you have a fairly high risk of dying. We move on to the difficulties our present culture has with the blunt fact of death. Death café is a movement involving tea, cake and chatting about dying, which in its verb form is something you do. Later I’m chatting to a woman who is an atheist who says she’s not afraid of being dead, only the process of dying. I describe my vision of the lovely place I’m going to after I die where I will meet up with all my old friends and family, which brings the conversation to rather sudden end. Note to self, after-death narratives may be incompatible, even bordering on the intolerable. In the afternoon Kathryn Watson allows us a glimpse into her world in which she experiences borderline personality disorder. She has illustrated these experiences and added text to show how she has responded with alienation and fear to fairly normal social events. Her talk gives me an insight into what people are feeling who may seem shy or unfriendly. Her calm, almost disinterested approach belies a bravery in speaking of her experiences of poor mental health. Her poem about the snow leopard that only knows the hills, emphasises the difference between her as a person and the experience of poor metal health. The patient voice in this mental health session really explored how storytelling can offerways toreflect on the experience of mental illness and how, to do this in a safe community, alleviates the taboos and fears attached to mental ill health.
Back to death with Kathryn Mannix who tells us that death is not as bad as we might fear and quite a few of uswill die peacefully in our beds. I will try to remember that in my own journey into the dark night of the soul. My Dad spent years after my mother died ranging about in his memories, trying to come to terms with his violent responses to poverty, unfairness, being almost blind and a turbulent mixture of bad luck and plain cussedness. I did my best to reassure him but he lived in fear of the world to come til his dying day. Thankfully Split Britches came on with their queer punk New York kick up the ass show and blew all the accumulated melancholy away. After that even the seagullscheered up.
Saturday morning and its back to business. Health care is a business that has to be funded by government, by private enterprise, by individuals, families and communities taking care of themselves as best they can. The keynote takes this fact seriously and illustrates all manner of ways in which story telling is being used by patients and doctors to enable health care to be more effective. It feels like there is a call for people to be alert, co-ordinated, have the arguments at hand and be ready to back one another up, because an ill wind is blowing and its surely blows the equal access to good, free,responsive, health care for all at the point of need, no good at all. In the Swansea museum I meet Martin Thomas who gives me a whirlwind tour of the exhibition he has co-curatedabout the Swansea mental health asylum that has been partly demolished. From the steadfastness of a local councillor to have it built in the 19th century through to the anti-psychiatry movement and care in the community the exhibits are redolent of how institutions and individual’s experience of poor mental health have negotiated their way to the modern approach. These exhibits include a electro-convulsive machine, a siren and floor tiles that had one pattern for the women’s quarters and another for the men’s.
The session on heritage for health began with Bart De Nil talking about access to museums for people with mental health problems and rough sleepers. He spoke about the challenges of reaching out to people in these circumstances. He tried to take a grass roots approach where local activists organised groups to make visits. He stressed that this work was voluntary as he found that if it was funded you had lots of friends and the attendees were what he referred to as the “usual suspects” meaning more middle class people with a certain degree of cultural capital already accrued. Part of the session was to encourage people to talk about the narratives that museum objects might suggest.
Chinyere Nwaubani spoke about the Griot storytelling tradition and how it is used in communities for the promotion of health and wellbeing and raising consciousness of the positive aspects of being of African heritage. Chinyere emphasised the benefits of sitting in a circle to talk and when the any questions part of the session came we managed to create a circle in the room and that felt much more relaxed than facing an audience.
My own presentation about patterns on a welsh blanket setting off a sort of healing transformation went well and I came away thinking about looking for patterns in story research and also looking for the bits in between the patterns, a bit like RS Thomas’ spaces between the stars. And the grand finale, Tenovus choir performing a piece about cancer-patients speaking up and taking control of their treatment and thinking about what was right for them asindividuals, how this had improved their experience of health care and allowed them a feeling of agency in their engagement with doctors and administrators. What a marvellous example of patient voice and narrative understanding leading to the efficient working of the NHS. Then came a man like Mandeep Singh giving his all in the conference rap, don’t forget the love…….
Stephanie Dale - SWANSEA, UNSILOED
There were many gifts in store for me in Swansea in June, primary among them a conversation with Rachel: singer, songwriter, mythmaker, storyteller, mother of a young daughter, wife of an artist and custodian of one of the most extraordinary personal stories I have had the privilege to encounter; a fellow Antipodean who has made her life in the land they once and still call Cymru, known popularly as Wales.
Rachel Taylor-Beales had attended my session at the Storytelling in Health conference - Raising Voices and Visibility in the Australian Outback, where for the past five years I’ve pioneered writing for wellbeing (#courage). We met, after all was said and done on stage, inside a difficult conversation with a young woman in the audience. (Yes, it was something I said.)
Later I spotted Rachel across the coffee shop, approached her table. Accepted her invitation to sit for a few minutes, which was all we had given a packed conference schedule and presenters neither of us wanted to miss.
And so we sat at polar opposites of another difficult conversation (yes, again, it was something I said).
Coffees grown cold, roaming over an extraordinary conversational landscape, we revealed ourselves to ourselves and each other, disagreeing and meeting, listening and meeting, returning to our poles and meeting even then across the vast gulf between our thoughts. It was a conversation notable for the absence of the need to convince, justify or compel our interlocutor. A conversation that lasted well beyond the sessions we missed, as we gave our time instead to each other.
The Storytelling in Health conference was unique among my experiences of conferences. I am a journalist by trade. I am specific about the use of the word ‘unique’. It is a word I would not use in a decade’s worth of words. And yet here I stand with unique.
Here’s why: the absence of silos.
I am a woman who works alone in a desert (literal and metaphorical) and whose work is notable for the absence of peers on home ground. It is in the distant north, that for now united kingdom, where I have found ‘my tribe’, a trove of vibrant, passionate, intelligent folk who are as excited as I am by the gifts each and every one of us brings to our work.
It is a society of artists, academics, healers, bureaucrats and policy makers among whom the absence of defined identity is not only notable, but pivotal to the success of the community and the conference.
Where I come from, I am outlier. I belong in no silo: not arts, not health, not academia, where the realms of ‘writing for wellbeing’ and ‘storytelling for health’ are zealously claimed and jealously guarded.
In the distant north, at a conference hosted by Swansea Bay University Health Board and the George Ewart Centre for Storytelling from the University of South Wales, there were no such silos. There we were, 200 people on common ground with zero capacity to readily identify the professional identity of the one to whom we were speaking (other than recourse to the conference program).
And there’s more: towards the end of the conference, during another remarkable experience – the Long Table, Lois Weaver’s work, look it up – it became clear to the significant number of people in that room that contrary to appearances most people at the conference did not already know each other.
Isn’t that astonishing? Three days and two nights of steady companionship and camaraderie on common ground and we discover that ‘everyone’ does not know each other, that in fact most of us have met for the first time. Strangers and guests, regardless of silo, beyond thought for professional identity, heedless of ‘status’.
For what it’s worth, here’s my small theory: it’s due in no small part to the demographic of the dominant culture in this field.
We are a nationtribe of women not young and not old and, to be frank, we have the numbers.
As is the way of mature women we are inclusive: of the young and the distinct and the masculine. We are respected and respectful and we are way beyond gauging the value of a human being by silo or status. We have also found ways to put our skills and qualifications and experiences to work in creative ways that bring delight and meaning and truth and courage and purpose to what we ‘do’.
We are in love with each other and we are in love with our work.
And this conference, Storytelling in Health, was a chance for our culture – the culture of middle-aged women - to shine.
It was an opportunity to showcase professionalism, unsiloed.
A place to laugh and cry and share and listen and meet and grow inside ourselves and our community amidst every single one of its myriad faces and genders and ages and cultural backgrounds. Here we are and we are enough, as we are, are you are.
Welcome, welcome all.
#raising voices and visibility #tell your story your way www.facebook.com/stephaniedale22
Diolch and iechyd da.
Storytelling for Health II was by far the best conference I have ever attended. As an academic administrator overseeing interprofessional students and faculty from diverse backgrounds, I can attest that the learnings from the conference will be compelling and useful to students’ continued academic training and the faculty’s professional development.
A wonderful mix of academics, artists, practitioners, and community leaders working in the Storytelling space, the conference represented both a diversity of disciplines and a diversity of geographic locations. This representation enabled a triangulation of insights that I have not seen at even the best interdisciplinary gatherings.
Best of all, attendees are passionate about the work: we are ready to leverage opportunities to mobilize the many perspectives present at the Conference and in conversations going forward in contexts of publication, presentation, and perhaps even funding mechanisms. My suggestion? Join us in these conversations!
I believe the 2019 event has ignited a passion amongst attendees to continue to formalize Storytelling as discipline to be studied and to be utilized as a strategy for building a better health sector internationally. I feel re-energized in my own work knowing that there are folks out there who value storytelling as I do.
To my knowledge I was the only attendee from the United States. I heard about the meeting through the National Organization for Arts in Healthcare (NOAH), a professional association based in the States that, among many other things, curates information about opportunities to join communities doing work in the arts writ broadly. I will definitely be sharing my positive experience with colleagues from across the US, seeking to mobilize the robust pockets of storytelling scholarship happening at our universities and in our healthcare organizations to become part of the international Storytelling for Health community.
I am already looking forward to Storytelling for Health III!
I had the honour to exhibit stories from Soul Relics Museum at the Storytelling for Health Conference in Swansea 2019. It was my first time in Wales and the conference experience was truly amazing. I felt energised and inspired to meet like-minded people across different disciplines who came together for the same vision and passion. I met other early-career researchers looking at healing approaches across cultures; I heard powerful personal stories of how they discovered the healing power of storytelling; I had a fruitful, engaging and yet controversial conversation over the morning break about the use of trigger warning in public spaces. I was introduced to a radical therapist podcast and learnt about the work of a psychologist who fights for social justice from a speaker who gave a presentation about her therapeutic work with a group of women using expressive art. The conference embraced all sorts of art-forms – spoken word, rap, craft, music, performance etc. I was almost brought to tears by the fabulous Tenovus Choir, a choir sung by people with personal experience of cancer, singing songs of bravery and survival. I was hosted by one of the conference organisers – Heather. Coming from a psychology and research background myself, I learnt a lot from her and other artists on how to improve my exhibition from a curatorial and material perspective. I am very grateful for her wonderful hosting and we had a long conversation ranging from art to politics over tea in the evening. We also had the real Welsh experience – we had Welsh cake for tea. To stay true to the conference theme, we were joined by a local storyteller on a cruise tour after the conference. After the conference, I did a morning hike at Swansea Bay. It was refreshing and inspiring to be in touch with nature as I don’t have the privilege to be so close to the sea in London!
'We need to know patients as people, not as their condition,’ these were some of the initial words spoken on the first day of the conference by one of the keynotes Andrew Davies from the Swansea Bay University Health Board. They hinted at what was to come and that we would further learn from others on how incorporating stories and images illustrated a persons’ health condition far more effectively than their data ever could.
Our view from the conference site – The National Waterfront Museum
Here follows a selection of some of my personal highlights of the conference:
Daniel Morden, storyteller and Idris Baker, National Clinical Lead for palliative and end of life care, Wales - Breaking Bad News This was the first panel that I attended. Having worked with ENT (Head and Neck) consultant surgeons and witnessed bad news being given, news that for some was devastating and hearing stories from others of times when it was delivered (not by the surgeons that I’ve worked with) in an unsympathetic way leaving that person quite traumatised for years after those words were spoken.
Daniel raised the important point that ‘When I see my consultants they have a very short window of time to see me and I’m left with so many questions to ask’. Due to the limited time and the pressure doctors have to deliver this message quite quickly, leaving it to the Macmillan nurse to help the patient decipher the words spoken. Daniel also commented that ‘After my diagnosis I walked out of the room completely in shock and unable to see what would happen next ‘ many of the patients that I’ve worked with have expressed this same feeling, that after diagnosis they have wandered around in a daze of disbelief struggling to come to terms with the life changing news that they’ve just received.
Prue Thimbleby, Arts in Health Coordinator, Swansea Bay Health Board - Digital Patient Stories Digital patient stories, a powerful and effective way for a person to offer an insight into their experience whether as a patient or family member affected by their loved ones illness. Using photographic footage in video form we heard the story of Marius’ death as told by his wife from her perspective.
Kathryn Watson, Doctor and Visual artist Having been connected to Kathryn on twitter for some time I was pleased to attend her presentation, so effectively put together, she illustrated her lived experience of a mental health condition and the schema therapy used to treat it using drawings in such a thought provoking way as to help to place the viewer in her shoes therefore allowing them an insight into her daily challenges living with borderline personality disorder.
Katherine Mannix – Palliative Care Physician Dr Mannix further elaborated on Andrew Davies (Swansea Bay University Health Board) quote from his keynote in the morning ‘We’ve medicalised death as much as we have birth’ with some fascinating insights on the subject of death. Aside from incorporating some interesting facts such as only 10% of people survive after having CPR out of hospital and only 20% in hospital she also talked us through the procedure of dying itself, reassuring the audience that it was rare for this to be painful. She added that ‘Death isn’t a medical event, it’s a societal event’.
We were treated to a variety of art medium in an exhibition that challenged our perception on a number of subjects including Ginny Topp’s work Between the Shadows and the Light detailing her experience of having breast cancer (see picture below) and the Soul Relics Museum which showed photographs of personal objects accompanied by text which explained why these objects have held special significance to their owners during times of stress. Using visual means to tell stories both these exhibits contained an insight into others lives in such a powerful and thought provoking way.
How fabulous to have the conference rounded off by the very talented rapper and friend Mandeep Singh with a rap especially composed in response to the conference and not forgetting the wonderful Tenovus Choir who sang and spoke individually about their experiences with cancer (see picture below). Followed by the fabulous treat of hearing the story of Swansea Jack told so poetically by storyteller Carl Gough whilst cruising down the Tawe river.
And finally once again I must thank hosts Prue Thimbleby and Emily Underwood – Lee for doing such a wonderful job of putting together a fascinating conference and for inviting me to present my work from the ‘Patient As Paper’ project – an artist and surgeon collaboration.
Final thought: ‘The most dignified thing that you can do for anyone is listen’ Nancy Kline
Website: emmabarnard.com Twitter: @PatientAsPaper Instagram & FB Emma Barnard Artist
After attending the 1st Storytelling for Health conference in 2017, which filled my mind full to the brim, I had a lot of anticipation and excitement for the 2nd conference.
Starting with ‘The Devils Violin’ on Thursday evening, (a stunning performance), the conference completely exceeded all my expectations.
I stayed with friends of the conference, who welcomed three of us, (Cora, Chinyere and me) into their beautiful home in Swansea. This made a very special few days with such lovely people.
Friday, after a long walk on Swansea beach in the sun, was all about DEATH for me. It was sad, happy, moving, heart-warming. It confronted any fears or worries I had - and made many great conversations through out the day…
After this full, quite intense day, listening and learning, meeting and speaking with so many interesting people, followed by a very thought provoking and calming keynote speech, my brain needed rest.
So I set to find quiet and food and found the perfect place (a pub) and a brilliant new friend, Annie (another conference attendee, sitting quietly reading Kathryn’s book) and enjoyed an hour chatting like old friends about life and death and religion.
Saturday. My session on ‘film for health’ was an honour to be a part of, fascinating to see the other films and hear the directors speak followed by questions and conversations with the audience.
At lunchtime Griot Chinyere, storytelling in the garden was the highlight of the conference for me. A lot of the sessions that I attended were based around the practical and theory around hearing and telling stories, or the stories were performed to the audience. Chinyeres stories were participatory in the most joyful way, to be enveloped with a circle of people by a storyteller with such humour, passion and warmth was incredible.
The Tenovus choir finale, their powerful singing and moving stories, was a perfect end to the conference (though I wished I could have stayed longer for the the boat journey down the river).
Storytelling for Health 2019 was such a joyful couple of days. So many greatly talented, thoughtful and brilliant people gathered together and sharing their practices, experiences and stories. So many conversations about life and death, illness and wellness, empathy and compassion.
It filled my mind with the greatness of storytelling for health – and widened the possibilities for me, especially in telling peoples and patients story which is my passion. I came away glowing with emotion and determination to continue and to expand my practice.
I didn’t want to leave and cant wait till next time. Thank you so much, Prue and Emily!
There are many different conferences which I have attended but the story telling conference in Swansea in 2019 will always be unique and memorable for me in my memory. It not only brought people together from all different facets of healthcare and beyond but it allowed all of us attending to come together to tell our own story and share in our experiences for storytelling for everyone attending. The conference programme was so varied but catered for everyone’s taste. At all times I felt drawn to the honest conversations that were taking place not only in the workshops sessions but outside of the sessions in and around the venue. These were not only interesting to hear and be part off but more importantly it gave me insight and first-hand account on how storytelling had shaped people’s lives and work. I feel fortunate to be able to come to the conference and experience this. I have to say that I didn’t know what to expect as it was my first story telling conference but I am glad that I came as I feel that it has contributed to enthusiasm for my own work and its future development and direction.
The venue at the Waterfront Museum only added to better help weave together the whole experience and journey and give the storytelling performances even more impact on the day. The evening performances were all amazing from ‘THE DEVIL’S VIOLIN’ on the first day to ‘SPLIT BRITCHES PERFORMANCE COMPANY’ on the second day. Honestly it would be hard for me to choose which evening performance was my favourite as they all were! I ensured that I attended all these and am grateful that I was there to take in the live atmosphere they afforded. Taking in these performances made me realise how important story telling is and how important integrating lived experiences is in healthcare today. I would highly recommend this conference to anyone thinking of attending in 2years. I know I will.
It wouldn’t be hard to write a report on those few days in Swansea, but there’d be something important lost in a prosaic record.
I’m a prolific note-keeper. I write every day. I keep a travel journal if I get a bus up the road. An old-school journalist by trade, my shorthand speed is death-defying if there’s an overheard snippet to be captured.
I kept a conference notebook, and it’s stuffed with excellent presentations from inspirational speakers. There were stories of bravery, and innovation, and the most profound care for patients. I have huge respect for anyone who applies great diligence to their work. When they layer that with sincere empathy for those in their care – well, I can fall slightly in love with complete strangers.
I don’t often write about personal issues. Truth is, as I prepared my little piece for the “Writing for Wellbeing” session, I was doing the round of blood tests and scans, not knowing if I’d have a cancer diagnosis before the month ended.
It’s a state of mind that very many of you know, all too well. I was still in the limbo-land of foolish optimism versus frightened pessimism. [I got a call from my GP, early on the Friday morning. The phrase “fibroids, nothing more” is now my favourite, in any language. I felt relieved, and so lucky, and went for an icy paddle in Swansea Bay to celebrate, to the amusement of a baffled dog-walker.]
I’d signed up for this conference because I came last time, and it was a delight, full of quirky characters and clever, thoughtful approaches to this work.
I always fret about presentations; you’d never think I’d been at it for more than 40 years. I wondered if my work were ‘academic’ enough – would the impressions of a jobbing journo, now a part-time tutor with an insignificant City & Guilds certificate in teaching adults, be enough in this setting?
My students, though, are always the bedrock of what I do. Even with poorly managed local authority schemes, and a form-filling burden that defeats even the most assiduous bureaucrat, it’s the learners who make me laugh my socks off, cry all the way home from a lesson, or create that sharp intake of breath that accompanies a story I can’t wait to tell the next living being I see. They are superheroes in plain clothes, my lovely writers.
In our session, the first speaker, Stephanie Dale, spoke of her students’ courage: “It’s a bridge of terror they must cross, to do the one thing they want to do more than anything – and that’s to write.”
My conference journal is a treasure of ideas, advice and guidance. That few days were worth so much, in helping me to get out there and find learners. I’ve ditched the local council scheme, and its box-ticking, so I’ll be teaching in pubs, sports centres, church halls and – quite possibly – on the bus.
This event may be called a ‘conference’, but it demands a better description. In the 1960s, there were “happenings”. I suppose they were impromptu, and surprising, and memorable.
I think Prue and Emily have done something very deft and creative; they put in all this detailed work, all the planning and organising, to make something like a ‘happening.’
There were some adorably boho moments, from the mini Welsh lesson to kick us off [and yes, the jury will always be out, on the spelling of cwtch versus cwtsh!], to the boat trip and the tale of Swansea Jack, and the simple yet brilliant concept of the Long Table discussion, which was truly democratic and inclusive in its dynamic.
And here’s the part that harder to describe: there’s a thoughtfulness to this event. There’s an atmosphere created that goes way beyond good ‘customer care.’ There’s acknowledgement that all of us could be having a tricky time of it, but we’re still trying to do our best. I met speakers and delegates who had been through tough times, some still coping with physical and mental illness. The fortitude of others always blows me away. The kindness of others fills me with hope.
I’d like to come to every future iteration of this ‘happening.’ I don’t care if I make the tea or do the washing up. Missing it would be missing out.
It was a joy to attend The Storytelling for Health II Conference, an inspirational conference of connection and healing. The programme was beautifully put together with sensitivity, Prue and Emily creating a space of sharing that enabled honest conversations, connection and insights. Using Open Space Technology we found ourselves going to the places that we needed to be, and therefore having the conversations that we needed to have with the right people. This dynamic enabled me to listen to myself and my needs, to immerse myself in the stories of others without restriction and participate in conversations.
The conference began with opening presentations of sincerity and passion for Storytelling. Tracy Myhill embodied the importance of openness and the power of connection when sharing her story. Emily Underwood shared her experience of storytelling and her need to take control and shape her identity through performance: ‘by telling our story we take control of our narrative ‘ Their openness and integrity in sharing their stories immediately created an atmosphere of warmth, I felt like I had ‘come home.’
Throughout the two days I listened to stories, heard presentations, participated in workshops and learnt. I thought about how we tell our stories, why we tell them and who we tell them to; I reflected on the process of storytelling and the importance of personal safety and responsibilities; I considered consent and confidentiality; I saw how stories can be used in research and ethics governance, as an evidence base for improving practice. What underpinned the conference though was connection. It was explicit that Storytelling is all about connection, connection with ourselves and connection with each other as human beings of feeling and complexity.
My highlight of the conference was Beginnings/Birth, where I was given the opportunity to share my own experiences of healing through writing poetry, a process which has enabled me to return to my experiences of anorexia during pregnancies safely and explore my feelings. Tracy Evans presented on Birth Cafes, sharing stunning poetry that women in the cafes had written: ‘language is like a torch shining into the chaos of our unconscious inner life.’ We reflected on our bodies being the authors of our stories and the process of reclaiming lost and forgotten of selves, finding words to create new selves. I was grateful to be invited to participate in the panel discussion and contribute to the wider dialogue around Storytelling, exploring the healing and nourishing qualities of writing and sharing our stories.
Storytelling is a way to bring greater insight into ourselves and each other, delegates shared how storytelling had being a way of rebuilding themselves and as gaining mastery over their experiences. I came away with renewed passion in the importance of telling and hearing stories, across sectors, organisations and individually. We shared our stories with the knowledge they were part of a bigger conversation, a conversation that valued experience rather than statistics. We experienced the importance of putting people at the centre of their care, to bring greater compassion to health care and the world that we live in. Without stories, connection and compassion we are lost. I look forward to the inevitable growth and recognition of storytelling, the emergence of more research and meeting again at Storytelling for Health III.