Nicole Matthews,
Media and Cultural Studies,
Macquarie University
Naomi Sunderland, School of Health,
Griffith University

3.
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2.

• ACMI and Centre for Digital Storytelling: “audiovisual vignettes of approximately two to five minutes in length which present a first-person voiceover in conjunction with visual material sourced from the personal archive of its author, edited together on consumer-grade computers and software” (Poletti, 2011, 74)
• “Short, personal multimedia tales told from the heart” (Meadows, cited in Rossiter and Garcia,
2010, 37)
• A wider sense as used by Nick Couldry 2008

CDS: “assists youth and adults around the world in using digital media tools to craft and record meaningful stories from their lives and share these stories in ways that enable learning, build community and inspire justice… sharing and bearing witness to stories can lead to learning, action and positive change”
(from Centre for Digital Storytelling website)

• “We think of the facilitators as social issuefocused artists/activists creating work to help agitate and advocate for change in policy”
(Lambert, 2009, 85)
• “life-stories have the capacity to provide feedback to staff, managers and researchers working in the intellectual disabilities field.”
(Hamilton and Atkinson, 2009, 321)
• “participant-produced digital stories constitute a rich and relatively unexplored source of qualitative data.” (Rossiter and Garcia, 2010, 49)

Listening: under-discussed in comparison to questions of voice (O’Donnell,
Lloyd and Dreher, 2009)
• …in digital storytelling and life history contexts:
• Emphasis on “ordinary people” – displacing media gatekeepers, “the expert” “the professional”
• Many-to-many model of dissemination
• Commitment to a holistic approach to individual life stories
• Ethical concerns in re-purposing life stories

Emphasis on reflection and the reflective practitioner
• digital storytelling used to reflect on the practitioner’s own experience.
• Little or no evidence in health education
(or indeed much elsewhere) of use of stories in other ways

•
•
•
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“Digital storytelling is part of a wider democratization, a reshaping of the hierarchies of voice and agency”
(Couldry, 2008, 383-4)
The disability movement:
“Nothing about us without us”
“It is exhausting to… tell our story over and
over again” (Anderson in The Guardian, July 2,
2013)
Ubiquity of life narratives in Web 2.0

• SA and NT Dementia Training Study Centre, one of 6 state based DTSCs, each centre with a different focus, eg younger onset dementia; initial diagnosis
• Collection of digital stories by people with dementia and their families in 2009. 6000 copies distributed.
• One of a range of audiovisual resources
• Used for
• in-house training of health professionals;
•
• fifth year medical students; nursing, psychology and health students;
• initial and institution based in-service training of aged care workers

• Interviews with trainers: 7 individuals (6 within
DTSC), one focus group discussion
•
•
•
Online survey to those who bought or ordered the DVD: 6000 distributed, 9 responses!
• Trainers in aged care facility (3), one also working in
TAFE; clinical practice trainers based in hospitals (2); one social worker with a mental health specialism, one clinical nurse based in residential care (8 answered this question)
5 out of 8 over 10 yrs experience
Most acquired DVD for professional education but also for training
• Participant/observation in one training session with 5 th yr medical students.
Consequently, offers some insights into listening, but mostly from the perspective of the teacher/trainer.
Some reasons for the absence of work on listening?

• “People living the experience are telling and showing us most of the time what they need if only we want to listen” (Sheard, 2008, 25)

a.
“Remininscence work” as a meaningful activity for people with dementia b.
Lifestory books for care and care planning:
“Learning about a person’s past helps our understanding or interpretation of present behaviour” (dementia care trainer P) c.
Life stories and testimony of people with dementia incorporated into dementia awareness training d.
Reflective lifestory work by the health and social care workers as part of dementia care training

•
“Testimonial sensibility”:
“incorporates a variety of intellectual skills and virtues that govern how much credibility the responsible hearer will attribute to different sorts
of speakers in different sorts of circumstances” (Fricker 2003 154)
How does dementia care training use video storytelling to train listening?

“When you train, what they want more than anything from you as an educator, the biggest thing they want is, ‘Tell me how to manage these behaviours, just tell me how
to manage them.’“ (W2)
“I say to them, what is dignity in care, what is dignity and respect, care for people? They say all these clichéd responses… Then I use some examples and say… ‘I really like walking outside in thunderstorms, especially summer storms, and I love being outside in the summer rain. Would you let me do that
if I had dementia?’ No, you might get a cold. But that's dignity in care. They're things that I did pre-dementia. Why can't I do those things after dementia?”
(D2)

“That’s just invaluable having someone right there that you can touch, but the reality of
that is getting that person. Again it’s got to be the right person, right time. That’s a hard gig”
(W)
“The reason we developed [Visual Stories] was because you couldn't always pull a person
with dementia out of a hat and bring them to a training session, and it's not always appropriate. … it also puts them in a
vulnerable position to open themselves up to providing information that either wasn't safe or that just went down the totally wrong track”
(M)

• “The involvement of people with a dementia in dementia care training has so far been very limited – usually to case studies, video excerpts and occasionally direct one to one interview of people experiencing a dementia in front of an audience” (Sheard, 2008, 25)

• “I've been doing some training with some pre- entry students that have had no experience in
aged care whatsoever, been on the dole for the past X amount of years and this is their re-entry into the workforce again… what I've found with those students - and I've done a few of their trainings now - is that this is where the videos and things really come into their own” (D1)
• “if somebody has had no experience in the area whatsoever, if I get up and talk too much about it
I'm going to lose them and they're not going to follow what I'm saying, whereas if they can see it,
it's a lot more helpful to them. “ (D2)

• “when you show them a resource it gives a face to
the condition … they've already got the picture, it's an old, decrepit person in the nursing home, that's who you're talking about…. Then when you show them someone that's quite young and still talking very well, they're articulating very well what their feelings… you stop that and say to people what do you think? Quite often the first thing that people say is ‘they're very young’. And it's like oh gosh, I'm that age” (D1)
“it's an image that creates the response ” (N1)
Q12. “What sticks in your mind about the stories on the DVD?” “ That dementia can happen in the early 40s ” (203.26.122.8)

• “It is important to provide holistic person centred care to understand the person with dementia” (Q39.
203.25.122.8)
• “I believe staff are developing a better appreciation of the person behind dementia and not so focussed on dementia itself”
(respondent 203.188.154.130)

• “real [stories] are better – realistic, facts and emotions” (203.26.122.8)
• “real people – real stories have more of an impact than just those who talk statistics” (210.18.236.46)
• “utilising real people is most effective
“ (210.18.236.46)
• “the real thing’ often has more of an impact” (203.188.154.130)

• Emphasis on the continuity and on the feeling self.
• “I use David. I love it because he is not an actor. He’s a real person with dementia … He’s speaking on behalf of himself and I start with that... He’s the voice of people with advanced dementia. If we can take his words – he’s still able bodied, he’s still able to go out in public, he’s able to be quite semi-independent and yet still he feels like he has no control over his life. He’s scared, he becomes disorientated so he’s feeling that in early stage. If he’s feeling that then, gosh, he’s going to feel exactly the same things
if not more when he’s lost the voice to be able to articulate that.
” (W2)

• “the more hard hitting the message the better… I love shock value, love it, yeah absolutely” (W2)
• “residential care staff… see a person when they come in at a certain level of dementia… they forget this person was a … fully
functioning person at some stage but they don't see that. And when they see somebody like David or Cath who can articulate still and have got all these talents of things they've done and are doing, it sort of opens their eyes a bit... A lot of people get quite teary “ (Pm2)

“People with dementia have a similar collection of life experiences to you and I.
Seeing the individual and not the dementia means focusing on the characteristics that make each one of us unique and different”.
University of Stirling (2012) Best Practice in Dementia Care: Domiciliary Workers,
Part 2, p.9

•
• They have still feelings, just like you
• They were once a “fully functioning person” with a unique life experience and personality, even if they can’t talk about it easily now
“Person-centred ideas that require a new form of professionalism which is feeling based, being more open with self, reflective and which is all about joining up the personal and professional…Be ready for people who are affronted and formally complain about the content of person-centred training being inappropriately about ‘themselves’ rather than being about ‘others’”
(Sheard, 2008)

“using the visual stories stuff … we sometimes do reduce it to stereotypical things, so it doesn't actually look or explore the diversity…everyone's situation
is so different and unique… If you're in a training session and you use one or two things, half the people will say, “Well... what about these people?”
(Dementia trainer, N1)
• “sometimes if you show a film from residential care in acute care they kind of just go well ‘we don't do that in our case…’ ” (Pn1)
• “…or if you do raise it, you've got to connect
the dots like you were saying earlier, you've got to take people through why it's relevant”
(W1)

• “we really wanted to have something that would convey to the people who hadn't had experience with LGBTI communities what it's like to live as a marginalised
individual, at fear of discrimination and interestingly, these people don't go into that, which makes me think we've chosen people that are quite confident, able to state their needs and demands without fear of retribution or persecution. Which is great, but loses the entire message…” (M)
• [we are] asking them to lay their soul bare and to think
of the horrible things that may happen ” (M)

• Critiques of tragic narratives from disability activists
• What kind of “quality of lifestory” (Couser, 2013) is this?
• Dangers of sad stories: “you need to use it well and debrief it and use it in a purposeful way… you can actually do damage to staff… why would you want to
work in this area, it’s going to break your heart?” (L)
• “No-one says they want to be a geriatrician” (Pm2)
• Chater and Hughes (2012) – optimism about patients with dementia characteristic of better care

• “you can't stir it up and then not be able to take it anywhere or do anything with it.
That's just destructive” (W1)
• “So I had one woman who just challenged me the whole day, but her challenging was purely all about her mother-in-law. It wasn't about her work environment, it was personal… I think she was fighting within herself and thinking that can't be
the real thing. She can't truly be a nice person because she's presenting so horribly “ (W1)

• “passive empathy” (Boler, 2006) and the need for
“epistemological modesty” (Kittay, 2009)
• Empathy as “fellow feeling”?
• “emotions are interpreted most productively not as affective lenses on ‘truth’ or ‘reality’, but rather as one important (embodied) circuit through which power is felt, imagined, mediated, negotiated and/or contested”
(Pedwell, 2012, 176).

The already known as a problem in life narratives (Kelly 2008) as well as a means of communication (Burgess, 2006)
• Testimonial listening: “the reader accepts a commitment to rethink her own assumptions, and to confront the internal obstacles encountered as one's own
views are challenged...What is at stake is not only the ability to empathise with the very distant other, but to recognise oneself as implicated in the social forces that create the climate of obstacles the other must confront (Boler, 1999 cited in
Kelly 2008, 18).”

• Short and “going somewhere” otherwise “what is my take home message? I think it gets lost “ (M)
• Aesthetics as important
• “Pausable”:
• “was there an opportunity for us to break the story so that people could use it and say right, so okay, Joy's at this point. What do you think is going to happen?... as a care worker if you were confronted with that, what would you be thinking and how would you respond?”
(M)

What do you think is the
“take home message” of this film?
What are some of the similarities and differences between this film and David’s story?

• Fictional narrative used to shape identification
• Gothic genre as central
• Horror themes – similarity to
David’s story?
• Awareness still at the centre
• Could you have made this story with the involvement of carers ?

The pedagogical value of bad examples:
“ I cringe a little bit with these titles of relationship centred care and person centred care, particularly person centred care because it’s a lovely title but it’s very easy to go, well I’m a nice person and so that’s what I do practise.”
(W2)
“unless people are challenged on it, they can look at it and go, ‘That’s what I
already do, I’m very open minded about that sort of thing.’ But just because
I’m open minded about it is that what my body language says?”” (W2)

• “the distinction between experience and reflection imposes both a hierarchy and a chronology of increasing detachment. Experience is immediate but messy… That messiness can be transcended only through 'a conscious and voluntary effort to establish belief upon a firm basis of evidence and rationality' (Dewey, quoted in Boud et
al. 1985b: 21)…. Through reflection, we are always getting better. Through reflection, we partake of the dream of reason, the Western tale of progress
through rationality.” (Michelson, 2006,
439)

• “What does it actually mean to treat somebody with dignity and respect?
They're just words, but in this circumstance you might have an example of
how that's actually done so that others can watch more practically” (W1)
• “these forms of knowledge and feeling are not bound to reflect what currently exists on the ground (though they certainly may do so), they can imagine affective relationships that move beyond what ‘we’ already think
we know or feel is true or inevitable” (Pedwell, 2012, 176)

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Anderson, Naomi (2013) “Disability care and the NDIS: our readers respond” from The
Guardian, Tuesday 2 July
Boler, Megan (2006) “The Risks of Empathy: Interrogating Multiculturalism’s Gaze”
Cultural Studies 11(2) 253-73
Burgess J.E. (2006). “Hearing Ordinary Voices: cultural studies, vernacular creativity and digital storytelling”. Continuum: Journal of Media and Cultural Studies, 20(2), 201-
214. doi:10.1080/10304310600641737
Kathryn Chater and Nic Hughes (2013) “Strategies to deliver dementia training and education in the acute hospital setting” from Journal of Research in Nursing 18: 578-
93
Couldry, N. (2008). Mediatization or mediation? Alternative understandings of the emergent space of digital storytelling. New Media and Society, 10(3), 373–391. DOI:
10.1177/1461444808089414
G.Thomas Couser 2012 “Narrative Disability inside and Outside the Clinic, or, beyond
Empathy” MLA 2012
Miranda Fricker “Epistemic injustice and a role for virtue in the politics of knowing”
Metaphilosophy 34(1-2) January 2003
Hallahan, L. (2009). Public Testimony: Empowerment or humiliation? The Story of the
Story: Life Writing, Ethics and Therapy Conference, Adelaide: Flinders University

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Kelly, R. (2008). Testimony, witnessing and digital activism. Southern Review, 40(3), 7-22.
Kittay, Eva Feder (2009) “The personal is philosophical is politics: a philosopher and mother of cognitively disabled person sends notes from the battlefield” from Metaphilosophy 40(3-4) pp.606-
627
Lambert, J. (2009). The Field of Community Arts. J. Hartley and K. McWilliam (eds) Story circle: digital
storytelling around the world. Chichester, UK: Wiley.
Meadows, D. (2003). Digital Storytelling: Research-Based Practice in New Media. Visual
Communication 2003(2), 189-93. doi: 10.1177/1470357203002002004
Michelson, E. (1996). Usual suspects: experience, reflection, and the (en)gendering of knowledge.
International Journal of Lifelong Education, 15 (6), 438-454.
O’Donnell, P., Lloyd, J., & Dreher, T. (2009). Listening, pathbuilding and continuations: A research agenda for the analysis of listening. Continuum, 23(4), 423-439
Poletti, A. (2011). Coaxing an intimate public: life narrative in digital storytelling. Continuum, 25(1),
73-83. Doi: 10.1080/10304312.2010.506672
Rossiter, M. and Garcia, P.A. (2010). Digital Storytelling: A New Player on the Narrative Field. New
Directions for Adult and Continuing Education, 126: 37-48. DOI: 10.1002/ace.370
Pedwell, Carolyn (2012) “Affective (self-) transformations: Empathy, neoliberalism and international development” Feminist Theory 2012 13: 163
David M Sheard(2008) Growing: training that works in dementia care Alzheimers’s society lfrom
Feelings Matter Most series