Using narrative to convey the experience of dementia care-giving: I Know How This Ends: Stories of Dementia Care

I Know How This Ends cover (2020)

Today I announced the release of a new output in the Parables of Care series:  I Know How This Ends: Stories of Dementia Care (2020).  This is the second volume in a series that started with Parables of Care: Creative Responses to Dementia Care (2017).

Drawn by Peter Wilkins and Melissa Martins, designed by Simon Grennan and edited by Yours Truly,  I Know How This Ends is a 16-page comic book resulting from collaborative narrative research and co-design sessions with participants.

The book presents, in synthesised form, stories crafted from narrative data collected via interviews with professional caregivers, educators, and staff at Douglas College in Vancouver, Canada, who have cared for relatives and people with dementia in hospital.

[Personal warning: where Parables of Care was a tender, sympathetic and even funny collection of practical strategies,  I Know How This Ends may prove a tougher, darker read. As Peter Wilkins put it in a message to the team, “all of the interviews were about incredible weight, abandonment and suffering”. A someone whose late father had dementia I can relate to such feelings around the care-giving experience, and I Know How This Ends indeed does attempt to represent and interpret the experiences of the care-givers the project team talked to. We believe there is no way to make up the stark reality of dementia, its difficulty and emotional intensity. It would be unethical to do so. Some readers may be disappointed not to find more hopeful optimism in the book. In I Know How This Ends stories are being told and shared, and feeling and emotion, however difficult, are being channeled and processed. I see in this act of storytelling a significant source of hope. Personally I hope the book helps communicate the problematic and painful intensity of the experience of care-giving, saying to those that might be struggling that they are not alone].

The previous volume employed the form of the parable to tell individual stories based in real-life cases as told by carers. As the foreword explains, this new comic is structured like a classical Greek tragedy – with a prologue, three episodes, and an epilogue –because the stories the team worked with had the elements of tragedy: inevitability, stratagems to avoid fate that merely bring it on, and catharsis of negative emotions.

The intention of the book is to show the importance of feeling in care-giving, the professional aspects of which are sometimes at odds with the family systems aspect of dementia.

As we state in the foreword, by 2030, 82 million people are anticipated to have dementia and 152 million by 2050. With this project we aim to continue making a contribution to widen the dissemination of one of the key challenges of our time, following user-centred design and narrative research design methods.

  I Know How This Ends: Stories of Dementia Care  can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

As this is a publication made for print please note the PDF file is 130MB; mobile users might prefer to download it and view it from a laptop or desktop.

The free print version of the comic will be available soon and you can request free copies via this form.

My gratitude to all the members of team, as well as other colleagues, friends and family members whose direct and indirect support throughout the development of this phase of the project was essential and is sincerely appreciated.

For a list of credits and thank you’s please look inside the book. ;-)

We look forward to hearing what you think.

Podcasting for Research Dissemination: Launching the City Interaction Lab Podcast

Panel by Peter Wilkins, from I Know How This Ends
Panel by Peter Wilkins, from I Know How This Ends

City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics 

Earlier this week we launched the City Interaction Lab Podcast with an inaugural episode where we talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).

Brought to you by City Interaction Lab and the Centre for Human-Computer Interaction Design at City, University of London, the City Interaction Lab Podcast will be a series of thought-provoking design-focused audio episodes featuring interviews and opinions hosted by Stuart Scott and myself.

In this inaugural episode we discuss work co-designing the comics ‘Parables of Care‘ and ‘I Know How This Ends’ centred on dementia care. These complementary issues shine  light on those living with dementia and their carers.

We are aware of the issues with audio levels in this episode; we’ll do better next time!

Our gratitude to Professor Martin Eve for allowing us to use his track The Learning Experience as our podcast theme track.

The original audio file of the podcast has also been deposited in City Figshare.

Citation:

Priego, Ernesto; Scott, Stuart; Wilkins, Peter; Grennan, Simon (2019): City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics – Parables of Care. City, University of London. Media. https://doi.org/10.25383/city.11347799.v1

More on Parables of Care

Parables of Care explores the potential of comics to enhance the impact of dementia care research.

The 16-page publication presents in comics form true stories of creative responses to dementia care, as told by carers, adapted from a group of over 100 case studies available at http://carenshare.city.ac.uk.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

If you work in a library, hospital, GP practice or care home- or care for someone with dementia in the UK, you can order a free copy of Parables of Care here: in the UK you can request printed copies at no cost here.

From the original post at https://blogs.city.ac.uk/hcidcomicsgames/2019/12/09/launching-the-interaction-lab-podcast/

On the Aesthetic Education of Caregivers: Presentation Report from #GM2019 at the Parables of Care blog

This post was originally published on the Parables of Care project blog and the images are hosted there. Copying and pasting here for self-archiving purposes.

The City, University of London and Douglas College, Canada research team collaborating on comics and creativity for healthcare were present at the Graphic Medicine 2019 international conference in Brighton, UK, hosted by the Brighton and Sussex Medical School, 11-13 July 2019.

The title of this fully multidisciplinary conference this year was Queerying Graphic Medicine – Paradigms, Power and Practices.

A full report of the conference is outside the remit of this blog post. However, you can catch up with the conference hashtag on Twitter- to make that easier I created a searchable archive of the #GM2019 tweets here. There’s some excellent photos, sketches, comics, links and information that give a rich collective view of what went on.

Abi Roper (City)  Marie-Pier Caron (Douglas), Ruhina Rana (Douglas), Peter Wilkins (Douglas) and myself (City) presented in a panel in the Paradigms Panel at Room M2 on Friday 12 July 2019, from 4 to 5:30 pm. The title of the session was “On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care”.

The presentation slides have been deposited on figshare and can be downloaded under a CC-By license as

Priego, E., Wilkins, P., Roper, A., Caron, M., et al. (2019) On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care. Presentation. [Online]. Available from: doi: https://doi.org/10.6084/m9.figshare.8863448. [Accessed: 16 July 2019].

The audience included health care professionals, academics and artists also working on dementia, aphasia and mental care, with the conversation between audience and presenters extending beyond the Q&A and the session allocated time and offering a valuable networking opportunity to continuing or initiating further collaborations. We were all very grateful for the attentive and engaged audience who attended our session, and for their important questions and feedback.

The team also distributed free copies of both Parables of Care and the INCA Project‘s MakeWrite poetry booklet (in a limited and numbered edition handmade by Abi Roper specially for the conference). This happened both at the panel session itself and throughout the whole conference thanks to the generosity of the Waterstones table (Richard- if you read this, thank you!).

Table at conference panel room
Conference Waterstones table

The Brighton conference was a unique opportunity for the team to work together (for once not mediated by computers nor geographically separated by the 7,573 km distance between Vancouver and London, UK), to get to know each other better and strengthen our research ties. Though Simon Grennan was unfortunately unable to make it due to work commitments, he was in touch with us throughout and before the conference had ended he had already shared with us the proofs for the Parables of Care Spanish translation, which we will release before the end of the Summer. (We missed you, Simon!)

Priego, Roper, Caron, Rana, Wilkins at GM2019
Left to Right: Priego, Roper, Caron, Rana, Wilkins

The conference provided plenty of further evidence that our previous and ongoing work fits within a larger, fully international and multidisciplinary, dynamic and exciting network of individuals and organisations focused on advancing the case for the use of comics and other multimodal storytelling media within healthcare. I think it is fair to say that all of us had the most fantastic, nurturing, fun and thought-provoking time.

Thank you very much to all the GM2019 organisers, as well as all our fellow presenters and attendees, for an incredible conference.

The GM2019 conference organisers announced the Graphic Medicine will return to Toronto next year. See you in Toronto for GM2020 maybe?

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

If you work in a library, hospital, GP practice or care home- or care for someone with dementia in the UK, you can order a free copy of Parables of Care here: in the UK you can request printed copies at no cost here.

Parables of Care at the Graphic Medicine 2019 Conference, Brighton, UK

graphic medicine conference 2019 bannerI am pleased to (slightly belatedly) announce on this blog that our multidisciplinary panel discussing Parables of Care will feature in the programme of the Graphic Medicine 2019 international conference in Brighton, UK.

Our panel will feature team members from the UK and Canada components of the Parables of Care project.

The title of the conference this year is Queerying Graphic Medicine – Paradigms, Power and Practices and will take place 11-13 July 2019 in Brighton, UK.

 

Story of Books: Five Minutes With… Me!

Story of Books - Five Mintues With...

I am grateful to Salina Christmas for having interviewed me for Story of Books:

https://storyofbooks.co.uk/2018/06/01/five-minutes-with-dr-ernesto-priego-project-lead-parables-of-care/

I talked about Parables of Care, about the power of storytelling and superheroes, my comic and real-world heroes, etc. It’s quick!

Story Of Books is a journal published by GLUE Studio. It is about an object we love above all else, the book. Their focus is on the making of compelling storytelling and the making of the book.

Story Of Books began life as a Twitter hashtag for their London Design Festival 2011 event, “Whatever is to become of books?”

 

Presenting at HCID Open Day 2018: On Comics and Collaborative Art Practice as Human-Computer Interaction Methodology

The HCID Open Day 2018 is a mini conference on Friday 4th May run by the Centre for Human Computer Interaction Design (HCID) at City, University of London.

The theme for this year will be ‘Beyond the Screen’ and will focus on designing non screen based interactions, exploring technology that has made the jump from science fiction into reality and how UX thinking can be used for more than just interfaces.

I will present at the HCID Open Day 2018 as part of the knowledge exchange and impact activities around the Parables of Care project. My presentation is titled Meaningful Patterns: Comics and Collaborative Art Practice as HCI Research.’

Recent research has explored the use of collaborative art practice as a Human-Computer Interaction methodology (Kang et al 2014 and 2018; Benford et al 2013; Brynjarsdyttir et al 2013). In this talk I will describe how the Parables of Care project is employing collaborative comics-making as a user-centred methodology as a means to collect and disseminate data, reflect, design and propose strategies for dementia care.

I worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleagues from HCID, leading the team to produce Parables of Care, that uses comics as a medium to evoke the kind of de-structured and re-structured experience of time that is akin to dementia, to illness, ageing and caring.

Register here: https://www.eventbrite.co.uk/e/hcid-open-day-2018-beyond-the-screen-tickets-44666147650

Hashtags: ;

Parables of Care is a project of the Centre for Human Computer Interaction Design, City, University of London, The University of Chester, UK, and Douglas College, Vancouver, Canada.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

Recent Updates on the Parables of Care blog

We launched Parables of Care on the 5th of October 2017.

As I’ve shared here too we have had weekly updates on the Parables of Care blog.

This month we’ve had two posts so far:

It’s a privilege to have asked Neil some questions about the project, and great to hear from Peter that the Canada side of the project is moving along nicely!

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

Interviewed by Abi Roper re: Parables of Care

Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.

Recently Abi asked me some questions about working on Parables of Care for the project’s blog. I have copied and pasted the original post below.


Parables of Care: A Q&A with Ernesto Priego

by Abi Roper

This post was originally published at the Parables of Care blog on 26 October 2017 at https://blogs.city.ac.uk/parablesofcare/2017/10/26/parables-of-care-a-qa-with-ernesto-priego/. If at some point in the future links to embedded media appear broken it is because the source post may have been changed location or is undergoing maintenance.

 

Dr Ernesto Priego
Dr Ernesto Priego, City, University of London

 

Ernesto Priego is a lecturer at the Centre for Human-Computer Interaction Design at City, University of London and the Editor of The Comics Grid: Journal of Comics Scholarship.

Ernesto worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleages from HCID, leading the team to produce Parables of Care.

I asked Ernesto some questions about working on Parables of Care.

 

As a speech and language therapist researcher, I work with people who have aphasia and may have difficulty in reading large amounts of written text. People with dementia can experience similar challenges. What do you think the comics format offers that other mediums might not?

Ernesto Priego: My view is that comics are a unique medium because they often rely on a unique, complementary combination of writing, still graphic images and other components of visual communication. There are, of course, comics that are very wordy—they employ a lot (and I mean a lot) of written text. And there are, of course, comics that include almost no text at all (titles, indicia, series names are also written text). Unlike animation, video, TV or cinema, most comics, particularly printed ones, allow users / readers to linger on the comics page. Comics are therefore, in their own way, a very ‘mindful’ medium, as they often rely on a type of hyper awareness of concrete and abstract constraints, of context.

In most comics, time passes through different vehicles so to speak: through the time of the written text, the time represented through layout (panel size and arrangement and the placement of characters, backgrounds, props, narrative components), the time represented through panels in sequence and the gap between them, and the time it takes each reader to read or navigate the comic itself. So comics are a very complex medium indeed, but at the same time they give users a freedom to linger and to interpret information in a way that synchronic media such as music, video, TV or film do not allow them to.

Rather than just a question of comics being able to present ideas without the need for many words, in this case we think of comics as a medium that can actually evoke the kind of de-structured and re-structured experience of time that is akin to dementia but also to illness, ageing and caring in general (Paco Roca’s Wrinkles does this very well).

 Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015) Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015)
Illustration from Wrinkles, a graphic novel by Paco Roca. © Knockabout Comics, 2015

In many cases, people with dementia, as well as their carers, experience a time which is ‘out of joint’ (Hamlet, that tragic hero…). The fragmentary yet sequential structure of the comics in Parables of Care seeks to communicate and empathise with this experience, and in this way it attempts to share a way of experiencing the world.

I’m more familiar with comics being used to tell stories of superheroes. How are Care’N’Share stories similar and/or different to these more traditional comics narratives?

EP: That’s a very good question. For many people the term ‘comics’ means ‘superheroes’. Comics are much more than superheroes but in the case of the Care’N’Share stories the analogy achieves the status of poetic justice. Peter said in the previous Q&A that the Care’N’Share caregiver-storytellers are poets. This is true. Your question makes me think that they are similar to Romantic poets, and in this sense to heroes. Caregiving is heroic because it is a journey, and the hero’s journey is both motivated and defined by a sense of ethics, a thirst for justice and order, and fate or destiny. I also think people with dementia are poets: they see the world in a way that forces the carer and other people to realign their way of seeing things. Like the poet, they often see things that others don’t. The carer is a poet-hero because they need to learn to interpret that poetry and engage in creative endeavour themselves.

The best superhero comics, in my mind, are not about invincible heroes but about vulnerable folk that are somewhat different: their ‘superpowers’ lie in their difference and in their ability to find solutions to problems for the betterment of their communities. (Think of Peter Parker, for example). There is a lot of doubt, anxiety and pain in the hero’s journey.

Peter Parker takes care of his aunt May after she suffers a heart attack. In Stan Lee (w), Steve Ditko (p), Sam Rosen (l), The Amazing Spider-Man, Vol 1, No. 17, October 1964.
Peter Parker cares for his aunt May after she suffers a heart attack. In Stan Lee (writer), Steve Ditko (artist), Sam Rosen (letterer), The Amazing Spider-Man, Vol 1, No. 17, October 1964. © Marvel Comics
 John Keats, by Joseph Severn, 1821-1823 - NPG 58 - © National Portrait Gallery, London
John Keats, by Joseph Severn, 1821-1823 – NPG 58 – © National Portrait Gallery, London

 

The caregiver-storytellers of Care’N’Share however do not see themselves as heroes, but what they do is heroic, it requires a sacrifice and a determination that is only possible when our deepest fears are defeated and our inner super powers come to the fore. I have the uttermost respect for dementia carers/caregivers. The stories they share are lessons to us all on our duty to our fellow human beings on how to empathise with what is often completely incomprehensible and find solutions that are respectful, loving and fair.

So it’s important to say that to me the beauty of ‘Graphic Medicine’ is that it’s not about idealisation or about fitting into generic narrative structures and archetypes. It’s about the personal journey, the vulnerabilities that make us human, and discovering the ways in which we can overcome serious challenges.

 

 

http://carenshare.city.ac.uk/

 

What have you learnt about dementia through your experience in creating Parables of Care?

EP: I am still learning a lot. The statistics alone provide sufficient evidence that dementia is one of the key public health and social challenges of today, not just in the UK but around the world. Working in this project required having an open mind about what we could achieve and be willing to accept that our contribution would be relativelly small but potentially impactful on some level.

To come back to my previous answer I think all of us working in the project learnt that a lot is achievable in terms of health care of incurable conditions if there is tolerance, empathy, creativity and imagination. In general working in adapting the stories forced us to attempt walking in the carers’ shoes. Susan Sontag wrote a beautiful book discussing the im-possibility of experiencing the pain of others through photography. I hope Parables of Care can contribute to share the experience of dementia care in a respectful and sensitive way.

Where else might comics be applied in healthcare? Where do you want to go next?

EP: Ah, that is the question! Short answer: almost everywhere. We believe that comics can be brilliant health information resources. And I think that Health Informatics and Graphic Medicine are a match made in heaven. We are already working on that next step. I am definitely interested in developing more work that explicitly connects the dots between graphic narrative and User-Centred Design and Interaction Design. I won’t say more for the time being. Watch this space!

Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

This post was originally published at the Parables of Care blog on 26 October 2017 at https://blogs.city.ac.uk/parablesofcare/2017/10/26/parables-of-care-a-qa-with-ernesto-priego/. If at some point in the future links to embedded media appear broken it is because the source post may have been changed location or is undergoing maintenance.

An Interview with Peter Wilkins re: Parables of Care

I interviewed Peter Wilkins a few days ago for the Parables of Care blog, and I have copied and pasted the post below:

Dr Peter Wilkins, Douglas College
Dr Peter Wilkins, Douglas College

Dr Peter Wilkins is the Research and Innovation Coordinator at Douglas College (Canada), and he manages programs for at-risk youth for the Douglas College Training Group. Peter is a founding editor (with David N. Wright) of Graphixia and the Deputy Editor of The Comics Grid: Journal of Comics Scholarship.

Peter worked in partnership with Dr Simon Grennan of the University of Chester, Dr Ernesto Priego of City, University of London, and an NHS Trust, to produce Parables of Care.

We asked Peter some questions about working on Parables of Care.

What is it that most interested you about Care’N’Share as a resource?

Peter Wilkins: Care‘N’Share gives a startling insight into the caregivers’ relationship to the dementia situation and their patients. I think we were all struck by the power of the stories even though they often occur in the most mundane settings. If we looked at it from a literary or narrative point of view, the stories often begin in realist mode and then suddenly shift into a surrealist or absurdist one.

The caregiver is like a character who passes through the wardrobe into a Narnia painted by Salvador Dali. Or like Marlowe going into the Congo in Heart of Darkness. They bring back something that gives us a glimpse into an alternative reality that shocks and frightens us. The uncanniness of the stories made me think of an untapped potential in using art, not as therapy, but as a means of accounting for dementia in a way that medical discourse doesn’t allow us to do.

http://carenshare.city.ac.uk/

Some stories in Parables of Care appear to be more or less difficult to ‘get’. What was the thinking behind it?

PW: Well, dementia is difficult to ‘get.’ Indeed, it is what philosophers would call sublime, unpresentable. This is where the idea of parable as a form or genre comes from and why we were so interested in the stories in the app. They are stories of practical reason, of enigmatic utility, of not knowing what to do in a difficult situation. This quality of the stories lends to the caregivers a kind of poetic heroism: they are faced with demands from the other side of rationality, dementia world, that they have to respond to in creative ways. So our conclusion was that caregivers are poets. To present the comics as easy solutions to the difficult problems of caring for people with dementia would not do justice to the caregivers.

On a related note, we were not interested in using the comics medium as a way of making things appear simple, in an “instrumental” use of comics. We don’t care for the idea of comics as simplistic communication; we care for the idea of comics as provocative works of art that will make their audience think and think again. It was great to work with Simon because he understands this through and through, and his drawings work really well at managing the audience’s response.

Peter Wilkins and members of the Douglas College Psychiatric Nursing team participate remotely at a Parables of Care workshop at City, 22 March 2017
Dr Peter Wilkins and members of the Douglas College Nursing team participate remotely with City Publishing & Creative Industries and HCID participants at a Parables of Care workshop, 22 March 2017, City, University of London

You are based in Vancouver, Canada. Can you tell us more about Douglas College‘s involvement in Parables of Care?

PW: We want to produce a companion volume to Parables that depicts the attitudes towards, and knowledge about, dementia from faculty and students across our Health Sciences faculty. We are working with focus groups from a range of programs, from Nursing through Dental Assisting, to generate material for the comic. The enthusiasm for the project here is tremendous, so we are very excited.

We are involving students in the work, which is important to us. They are running the focus groups and collecting the data. We have a young artist who has more experience in video game design than comics, but she is very committed and enthusiastic. It will be interesting to see how her work plays off of Simon [Grennan]’s. Sarah Leavitt, whose Tangles: A Story of Alzheimer’s, My Mother and Me is a groundbreaking graphic memoir on the subject, is consulting on the project, working with the artist.

Cover of Tangles, by Sarah Leavitt (Broadview Press, 2010)
Cover of Tangles, by Sarah Leavitt (Broadview Press, 2010)

A number of people from the faculty have told me about how they are professional caregivers, but when one of their family members has been struck by dementia they have been incapable of dealing with it. I’m interested in capturing those stories.

In any event, I see Parables of Care as the beginning of a much larger project that explores and documents dementia in comic book form.

Did you identify differences in how Canada and the UK approach dementia care?

PW: I can’t answer this question yet, but I hope to have some clues as we compare the data we collect with that from the Care‘N’Share app. I suspect that there will be differences and that they will be meaningful because even within Canada the different caregiving disciplines that engage with dementia don’t seem to communicate with each other that much. There are all kinds of gaps in the responses. I hope that the project allows people who work with dementia sufferers and their families to connect some dots and work towards a more holistic and universal approach to care.

There’s more than a hundred cases in Care’N’Share. As an editor, how did you approach the collection?

Our approach was to identify cases that represented particular strands of the dementia situation. While each case is unique, the stories do fall into categories: broken analogies, misrecognition, confinement and a desire for freedom and so on. What is important is that there are lots of satisfying though enigmatic eureka moments, where the undoubtable horror of dementia is relieved temporarily by the caregiver’s sympathy and genius.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

This post was originally published on the Parables of Care blog on 19 October 2017 at https://blogs.city.ac.uk/parablesofcare/2017/10/19/parables-of-care-a-qa-with-peter-wilkins/. If links to embedded media appear broken it is because the original post may have been changed or undergoing maintenance.

An Interview with Simon Grennan re: Parables of Care

I interviewed Simon Grennan last week for the Parables of Care blog, and I have copied and pasted the post here.

 

Dr Simon Grennan, University of Chester
Dr Simon Grennan, University of Chester

Dr Simon Grennan, is a Post-Doctoral Research Fellow in Art and Design at the Department of Art and Design, University of Chester. He is an internationally acclaimed contemporary artist, comics scholar and author of over 40 comics and artists’ books.

Simon worked in partnership with Dr Ernesto Priego of City, University of London, Dr Peter Wilkins of Douglas College, Vancouver, Canada and an NHS Trust, to produce Parables of Care.

We asked Simon some questions about working on Parables of Care.

What was your first impression of the Care’N’Share stories?

Simon Grennan: I was immediately fascinated by the combination of descriptions of emotional/physical challenges and the extreme brevity of the case studies. The stories told by carers already conformed to a rather strict pattern derived from a proforma, designed to enable speedy access to the information that each story provides, for readers. This might have denuded the case studies of their affective aspects, but in fact, it focused and intensified them. That was immediately striking and interesting.

 

http://carenshare.city.ac.uk/

 

What was the most challenging for you in the drawing process?


SG: The editorial task for Peter, Ernesto and I involved considering how this combination of emotional impact, information and brevity could be visualised. The concept of the parable offered an accurate description of the stories as told by carers: the original stories already had the effect of parables.

We lighted upon a key aspect of the parable – its function of representing big effects (issues, truths, significant ideas) by small means. This ‘big in small’ characteristic was actually quite easy to visualise, because there is a great range of visual models, particularly in the history and traditions of the comic strip: visual gags, for example.

We immediately thought of the four panel Japanese ‘yonkoma joke strips, which follow a set pattern for divisions of action. The form both produces and disperses ambiguity. That’s the way in which it works as a visual joke. Although the Care’N’Share stories aren’t jokes, by any means, part of their ‘parable’ character articulates exactly this manipulation of clarity and ambiguity. This seemed like a form particularly suited to these particular stories about dementia care, in which initial challenges to capacity, comprehension and communications are overcome by creative means.

In each story, there is a challenging scenario resulting from a specific experience of dementia, which is then reflected/acted up and finally resolved. For me, the task was then to visually articulate this balance of ambiguity and clarity in the narrative drawing, first creating a level of affective unclarity in the reader that I then develop and finally resolve.

As with visual jokes, creating the right affective balance between ambiguity and clarity is the main task. Too much ambiguity and the reader doesn’t know what’s happening. To much clarity and the reader has no emotional stake in the story. In both of these scenarios, the joke (or in this case, affect) disappears and the story fails.

I hope that I’ve managed to get the balance right! If so, each story should function as a parable, packing a lot of emotional punch (and taking the reader from ambiguity to clarity) with very few means.

 

 Dr Simon Grennan during one of the Parables of Care workshops, 22 March 2017, City, University of London
Dr Simon Grennan during one of the Parables of Care workshops, 22 March 2017, City, University of London

 

‘A Theory of Narrative Drawing’: what theoretical principles did you apply in Parables of Care?


That’s an interesting question. My new book A Theory of Narrative Drawing seeks to explain experiences of drawn stories, but it’s not quite a handbook for drawing stories! However, one of the interesting things about Parables of Care is its self-announcing, overt reliance upon the reader to articulate the visual story and the story world. Of course, the reader always undertakes this articulation, in every story.

However, in Parables of Care, this is entirely due to the creation of ambiguity in each story. These are stories where a reader feels that they can or are making mistaken readings or, if the stories don’t clarify themselves for some readers, they think that the stories are simply incoherent or/and badly told. It is only when a reader realises that ‘making mistakes’ is an affective substitute for aspects of the experiences of dementia that are told about in each story, for example, that the sensation of ambiguity is transformed, located and resolved. This is entirely the type of affective reading that A Theory of Narrative Drawing explains.

 

What are you hoping Parables of Care can achieve?


SG: I hope that Parables of Care will focus attention on the emotional aspects of dementia care. We have worked hard to introduce readers to the (largely non-clinical) experience of dementia care by providing them with affective sensations of ambiguity, including a sense of inexplicable altered capacity, frustration and maybe a sense of powerlessness. These sensations are turned around and articulated in each story, retaining the emotional intelligence and creativity of the resolutions to challenging situations. The reader goes throught this process too, and reaches a similar clarity and resolve.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

This interview was originally published at https://blogs.city.ac.uk/parablesofcare/2017/10/12/parables-of-care-a-qa-with-simon-grennan/. If links to embedded media appear broken it is because the original post may have been changed or undergoing maintenance.