#IGNCC20 Workshop Materials: Ambiguity, Empathy and Narrative Co-Design: The User Experience of Reading Dementia Care Comic

IGNCC20 conference banner

Our synchronous workshop at the International Graphic Novels and Comics Conference was hosted synchronously yesterday Thursday 2 July 2020, Session T7, 16:00hrs BST in the (online) conference Room 2.. We have included all the relevant information below.

The session was hosted live via the conference Blackboard Collaborate videoconferencing platform. It was free and required no previous registration. The Twitter hashtags for our session were  #IGNCC20 #woripr.

About 33 international participants attended and the discussion via video and voice and as text via the chat was very lively and interesting. Thank you everyone who attended and for your feedback and to the chairs and organisers for their very hard work.

The materials can be downloaded and cited via figshare as:

Priego, Ernesto; Grennan, Simon; Wilkins, Peter (2020)  Workshop: Ambiguity, Empathy and Narrative Co-Design: The User Experience of Reading Dementia Care Comic. University of the Arts London. Conference contribution. https://doi.org/10.25441/arts.12579731.v1
The workshop concluded by giving some ‘homework’ to those participants wishing to try it out. You can find it in the slides we shared on figshare (link above). No need to have attended the synchronous session to try it out!

Full conference information including programme: https://internationalgraphicnovelandcomicsconference.com/igncc-2020/

 

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.

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.

 

Parabeln der Pflege: new translation of Parables of Care makes comic about dementia care available to German-speaking audiences

Cover of the German version of Parables of Care
Cover of the German version of Parables of Care

A new translation of Parables of Care makes comic about creative responses to dementia care available to German-speaking audiences

 

Download Parables of Care (original English version) from City Research Online, City, University of London: http://openaccess.city.ac.uk/18245/

Download Parabeln der Pflege. Kreative Reaktionen in der Demenzpflege, von Pflegenden erzählt [Parables of Care German version] from City Research Online, City, University of London: http://openaccess.city.ac.uk/21252/

This new German translation is also available to download from ChesterRep, University of Chester: https://chesterrep.openrepository.com/handle/10034/621804

Parables of Care. Creative Responses to Dementia Care, As Told by Carers is a research-based comic book originally published in English in October 2017.

Parables of Care has now been released in German translation, translated by Dr Andrea Hacker, from the University of Bern, Switzerland.

About working on the German translation, Dr Hacker said:

“I wanted to share Parables of Care not only with my family and the wonderful carers that help us but with a wider German-speaking audience: Alzheimer, dementia – these affect hundreds of thousands of families in the world regardless of language. Widely sharing our experiences of what works will give everyone a chance to make the best of the affliction – patients and families alike.”

[Read our Q&A with Andrea here].

The comic book was created by Dr Simon Grennan, from the Department of Art and Design, University of Chester, UK; Dr Ernesto Priego, from the Centre for Human Computer Interaction Design, City, University of London, UK; and Dr Peter Wilkins from Douglas College, Vancouver, Canada.

The short comic book includes 14 informative and touching stories, drawn by Simon Grennan with Christopher Sperandio, which were adapted from more than 100 case studies of real-life dementia care situations described by a range of carers. These case studies are available at http://carenshare.city.ac.uk/

The small international team looked to expand the accessibility of this archive of carers’ stories and found that by creating short graphic art stories they could portray the emotional power of these situations. Each story is only four panels and just one page long.

Unlike clinical descriptions, this form enhances the affective aspects of each story, putting the reader at the centre of situations that often verge on incomprehensibility, but which are all resolved. In this respect, each story is universalised and becomes a parable.

The book is available open access to dementia carers and the general public as part of ongoing engagement, training and development programmes at City, University of London, the Tavistock and Portman NHS Foundation Trust and The Faculty of Health Sciences at Douglas College, Vancouver, Canada.

About the Translator

Dr Andrea Hacker is an editor, translator and open science professional who lives in Switzerland where she works at the University of Bern. She has previously lived and worked in the US, Russia, Ireland and Germany. She was mentored in literary translation during her graduate studies at UCLA by Michael Henry Heim.

Download Parables of Care (original English version) from City Research Online, City, University of London: http://openaccess.city.ac.uk/18245/

Download Parabeln der Pflege. Kreative Reaktionen in der Demenzpflege, von Pflegenden erzählt [Parables of Care German version] from City Research Online, City, University of London: http://openaccess.city.ac.uk/21252/

Q&A with Andrea Hacker on her Parables of Care translation: https://blogs.city.ac.uk/parablesofcare/2019/01/24/parabeln-der-pflege-a-qa-with-parables-of-care-translator-andrea-hacker/

For more information, please visit: https://blogs.city.ac.uk/parablesofcare/

Press enquiries contact: John Stevenson, Senior Communications Officer, City, University of London

This post was originally published on the Parables of Care blog at https://blogs.city.ac.uk/parablesofcare/2019/01/24/parabeln-der-flege-parables-of-care-german-translation-release/

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 The First USW Cardiff: Comics Symposium- Creating Comics, Creative Comics

Creating Comics, Creative Comics

Creating Comics, Creative Comics is a 2-day academic symposium taking place on Friday June 1st & Saturday June 2nd 2018 at the University of South Wales, Cardiff, United Kingdom.

I will make a presentation Saturday (panel 4) along Simon Grennan on a project we have been doing with Peter Wilkins et al. The title of our presentation is “Hypotactic correspondences between Yonkoma four panel manga, emotional ambiguity and story, in styling and drawing the comic Parables of Care: creative responses to dementia care (2018)”.

The First USW Cardiff: Comics Symposium is interested in creator’s perspectives. It will explore comics and creativity and will examine the practice of creating comics, and the particulars of storytelling in comics.

Does changing a panel, change the story? How might a medium’s materiality affect its construction and reception? How do the theoretical and philosophical objectives of the maker inform and frame the construction of the works?

This symposium addresses these needs from the point of view of the creators involved in the production and creation of comics.

Symposium Schedule

Friday 1st June

09:30 Symposium Registration: Registration Desk, The Street, Atrium

10:30 Symposium Welcome with FCI Deputy Dean, Huw Swayne

10:45 PANEL 1 ~ Philosophy, Communicating Concepts
Dr Peter Hodges, The Last Temptation: A Consideration of the Role of Sound in Comics
Xiyuan Tan, Guoxue Comics: Visualising Philosophical Concepts and Cultural Values Through Sequential Narrative
Ian Hornsby, UCOs, or Beyond the Marriage of Philosophy and Sequential Storytelling
Dr Nathan Kilburn, Practice as Research: The Visual Aphorism
Chair: Corrado Morgana

12:30 LUNCH

13:30 WORKSHOP
Chris Phillips, Creating Comics – 5 Page Red Riding Hood
With Geraint D’Arcy

14:30 PANEL 2 ~ Perception and Re/presentation
Jeannette D’Arcy, Creating Canon: Fun Home and Transmedial Adaptation
Dr Robert Hagan, Touch Me/Don’t Touch: Female Archetypes in Ann Nocenti’s Daredevil
Chair: Madelon Hoedt

15:30 KEYNOTE
Dr Julia Round, Anonymous Authors, Invisible Illustrators, and Collaborative Creation: Misty and British Girls’ Comics

Saturday 2nd June

09:15 DAY 2 Welcome

09:30 PANEL 3 ~ Practice-As-Research
Dr Paul Davies, New Choices of the Comics Creator
Ahmed Jameel, Studying Writer-Artist Comics Collaboration: A Practice Based-Approach
Dr John Miers, Fortuitous Realism at Work and Play: The Role of Imaginative Projection in Developing a Cartooning Practice
Chair: Brian Fagence

11:00 PANEL 4 ~ Comics, Parables of Care and the Medical Self
Tony Pickering, Diabetes Year One: Drawing my pathography: comics, poetry and the medical self.
Dr Enesto Priego, Dr Simon Grennan and Dr Peter Wilkins, Hypotactic correspondences between Yonkoma four panel manga, emotional ambiguity and story, in styling and drawing the comic Parables of Care: creative responses to dementia care (2018).
Chair: Emily Underwood-Lee

12:00 LUNCH

13:00
CICE PRACTITIONER PANEL
Jon Davis-Hunt and Rob Williams
With Brian Fagence

14:00 PANEL 5 ~ History, Memoir and Autoethnography
Nick Dodds, Reframing the Graphic Memoir: How can the comic-strip artist negotiate modality and fidelity in the depiction of personal and historical narratives?
Dr Simon Grennan, Drawing in Drag: self-observation, the dissenting subject and stylistic reformation in the production of a new pseudonymous comic album
Chair: Geraint D’Arcy

15:00 ROUND TABLE / PLENARY

15:30 SYMPOSIUM END

*In association with Cardiff Indie Comic Expo. Registration for the symposium grants entry to CICE Saturday 2nd June.

Registration link: https://www.eventbrite.co.uk/e/creating-comics-creative-comics-tickets-45194337480

ardiff Indie Comic Expo logo

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.

HCID Research Seminar: Making Parables of Care

Simon Grennan, Disposession

HCID Research Seminar: Making Parables of Care – Presenting creative responses to dementia care in comic book form

Friday 17 November 2017, 1:00-1:50 PM, A214

Dr Simon Grennan (University of Chester) will present at the HCID Research Seminar series at City, University of London (College Building, Room A214) tomorrow Friday 17 November at 1pm.

All welcome. If you are not a member of City, University of London and would like to join us for this seminar, please contact Katerina.Bourazeri@city.ac.uk for further details.

This seminar will discuss the practical rationale, theorisation and production of Parables of Care, a new 16-page colour comic book, which presents creative responses to dementia care, as told by carers, derived from a group of existing case studies available at http://carenshare.city.ac.uk.

Parables of Care is an impact project of the Centre for HCID, City, University of London, the University of Chester and Douglas College, Canada. Distributed as free hard copies and a free download to carers and those engaged in debates about dementia care, the book investigates the ways in which specific habits of reading comics can be activated in order to engage readers emotionally, as well as informatively, concerning the challenges of caring for people with dementia.

Full info at https://blogs.city.ac.uk/parablesofcare/2017/11/16/hcid-research-seminar-making-parables-of-care-presenting-creative-responses-to-dementia-care-in-comic-book-form

https://www.city.ac.uk/events/2017/november/hcid-research-seminar-making-parables-of-care-presenting-creative-responses-to-dementia-care-in-comic-book-form

If you are not a member of City, University of London and would like to join us for this seminar, please contact Katerina.Bourazeri@city.ac.uk for further details.

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.