Afterlives of digital stories

1. Afterlives of digital stories Nicole Matthews, Media and Cultural Studies, Macquarie University Naomi Sunderland, School of HealthGriffith University

2. Outline • The problem of listening and the promise of digital storytelling • Listening to storytelling: a case study • The value of learning with digital stories • Challenges of learning with digital lives • Some questions

3. 1. The promise of storytelling & the problem of listening Which digital storytelling? • “specific” digital storytelling: “audio-visual 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

4. What is digital storytelling for? 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)

5. The promise of repurposing digital lives • “We think of the facilitators as social issue-focused 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 to enhance • Education • Professional practice • Policy

6. “Quality of life” stories? (Couser, 2012) In health, gap between: • disabled people’s assessment of their quality of life • health professionals’ assessment of disabled peoples’ quality of life. • “the gap exposes a hidden impairment: a massive collective mindblindness in nondisabled people, especially health-care professionals, who are unable to imagine what disabled people are thinking and feeling” (Couser, 2012)

7. Digital storytelling in policy • Barriers to using digital storytelling and oral histories more in policy • 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 Listening: under-discussed in comparison to questions of voice in cultural theory (O’Donnell, Lloyd and Dreher, 2009)

8. Digital storytelling in higher education 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 • Present company excepted?

9. Why try to use digital stories differently? • “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

10. 2. Listening to storytelling: a case study • 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

11. “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)

12. Why digital life stories rather than a person? • “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) • “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)

13. Listening as central to dementia care education • “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) • “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)

14. Four uses of lifestory work in dementia care • “Remininscence work” as a meaningful activity for people with dementia • 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) • Reflective lifestory work by the health and social care workers as part of dementia care training • Life stories and testimony of people with dementia incorporated into dementia awareness training

15. Methodology • 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 5thyr 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?

16. Person-centred dementia care training “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)

17. 3. The value of learning with digital stories a.Replacing related life experience • “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)

18. b. Challenging pre-conceptions • “it's an image that creates the response” (N1) • “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) • Q12. “What sticks in your mind about the stories on the DVD?” “That dementia can happen in the early 40s” (203.26.122.8)

19. c. Encouraging person-centred perspectives • “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)

20. d. Offering convincing authenticity • “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)

21. “Patients are people with a history & something to lose” (5th year med student) • 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)

22. Affective listening: for learning • “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)

23. 4. Challenges of learning with life story Listening across difference “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?”(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)

24. “Coaxing” stories: listener-led telling? • The story people want to tell may not be the story that trainers want to use • “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” (M) • [we are] asking them to lay their soul bare and to think of the horrible things that may happen” (M) • What kind of “quality of lifestory” (Couser, 2013) is this?

25. Affective listening: switching off • No-one says they want to be a geriatrician” (Pm2) • 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) • Chater and Hughes (2012) – optimism about patients with dementia characteristic of better care

26. Dealing with emotions & resistance • “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) “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)

27. The danger of “passive empathy” • “passive empathy” (Boler, 1999) 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).

28. The pedagogical value of bad examples : “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)

29. Testimonial listening 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).”

30. “Breaking the story”? • “Pausable”stories as particularly useful • “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)

31. 5. Listening to lives: some questions • Are the stories people people want to tell the stories listeners need to hear? • Is the need for a “take home message” (M) shaping the stories that are being told? • Emotional stories are powerful for learning - but what are the consequences of eliciting that feeling? • What “quality of life” story are tragic stories telling? • Who will “connect the dots” (especially online)? • How to encourage listening beyond “passive empathy”? • Does “breaking” the story challenge the valuing of holistic storytelling?