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W3188451715 abstract "Visual art is increasingly used to mediate scientific findings, engage and educate the public and as a part of the research process itself. However, work connecting sociolinguistics and art in this way is only just emerging. This paper presents a project at the intersection of sociolinguistics, art and Graphic Medicine. It discusses how art can be used for public engagement and how the process of creating art feeds into the research process: Drawings can ground the analysis in the big picture and show how themes that need to be analytically separated relate to each other. Identifying motifs highlights what does and does not get talked about. Trans-mediating narratives into comics raises questions about the definition and structure of narratives, about tellability, shared knowledge and epistemic access. Overall, I suggest that sociolinguistics stands to gain from collaborating with artists in terms of public engagement and as an inspiration in the research process. Kunst nimmt eine zunehmend wichtige Rolle in der Wissenschaftskommunikation ein und wird zu einem Teil des Forschungsprozesses. Im Kontext der Soziolinguistik ist diese Art der interdisziplinären Arbeit bisher noch selten. Hier wird ein Projekt an der Schnittstelle zwischen Soziolinguistik, Graphic Medicine und Kunst präsentiert. Insbesondere wird diskutiert, inwiefern Kunst in der Wissenschaftskommunikation genutzt werden kann und wie künstlerische und analytische Prozesse Synergien bilden können: Zeichnungen verankern die Analyse in einem größeren Rahmen und zeigen Verbindungen zwischen Themen auf, die sprachlich-analytisch getrennt werden müssen. Die Auswahl von Motiven macht sichtbar, worüber gesprochen oder geschwiegen wird. Die Transmediation gesprochener Erzählungen in graphische Narrative wirft außerdem eine Reihe von Fragen auf: zur Definition von ‚Erzählung‘, dazu, welche Inhalte erzählt werden, sowie zu implizitem geteiltem Wissen und epistemischem Status. Die Soziolinguistik kann sowohl im Forschungsprozess selbst als auch in der Wissenschaftskommunikation von einer Zusammenarbeit mit Künstler:innen profitieren. Art is increasingly used to mediate scientific findings in a variety of disciplines (Butler, 2015; Haarmann, 2019; Metag, 2019), as well as being treated as a potential part of the research process (Gameiro et al., 2018; Haarmann, 2019). The present paper reports and reflects on the creation of a travelling exhibition ‘Making the Invisible Visible’ about the experience of living with a chronic condition, Type 1 Diabetes mellitus (T1DM), in Scotland. The exhibition consists of visual portraits (by Alpo Honkapohja) and comics (by Alex Lorson) and is based on a corpus of interviews and dyadic conversations about living with T1DM in Scotland collected for sociolinguistic analysis. Alongside investigating theoretical questions about modelling language variation, the data were analysed from a thematic and narrative perspective in order to collect best-practice examples and identify areas for improvement, particularly with respect to the provision of healthcare services. This raised the question of how to communicate these findings to different stakeholders: In presentations, academic publications, journalistic texts and blog posts, or through other forms like for example visual art? In what follows, I briefly outline the project background and discuss why I chose an art exhibition as one of the key ways of engaging the public. I then present examples of the portraits and comics included in the exhibition and discuss the first two physical exhibition events. I conclude by considering the communicative affordances and opportunities of visual art and how the creation of this travelling exhibition and the sociolinguistic analysis mutually benefited each other. This project draws on 24 h of dyadic conversations and interviews with 16 different participants living with T1DM in Scotland recorded in 2016/2017. They were recruited under the heading ‘Talk about Type 1 – The Highs and the Lows’ and invited to discuss their experience of living with T1DM. One of the stated goals of the project was to extract current best practices and areas for improvement in the local support and healthcare provision system. Each participant was interviewed and participated in three dyadic conversations centring around one topic each (‘Healthcare and technology’, ‘Social life’, ‘Mental health’). All conversations and interviews were fully transcribed and annotated for the analysis of how Listenership is negotiated in interaction and how participants vary in their vocalised Listener Responses (Eiswirth, 2020, 2021). Narratives (Labov & Waletzky, 1966; Mandelbaum, 2012) are a particularly interesting interactional context at the boundary between speaking and listening. Listeners can become co-narrators, they can animate voices in the speaker's story, and the listener's responses shape how the narrative unfolds. Occasionally, speakers relate the ‘same’ narrative several times to different interlocutors, and different participants share very similar stories. Participants also produce long turns that are not strictly narratives but rather accounts, lists (De Fina & Johnstone, 2015) or might be considered ‘soapbox’ when coding for style (Labov, 2001). Thus, trans-mediating oral to visual narratives raises questions about the definition of a narrative, highlights breaks in the sequential or chronological structure of narratives as told, and allows us to playfully investigate what is the ‘same’ in these ‘same stories’. In terms of engaging with the content of the conversations from a broadly discourse-analytic point of view, three approaches were taken: text mining with R (Silge & Robinson, 2017) for a broad strokes word frequency and sentiment analysis, identification and annotation of narratives following Labov and Waletzky (1966) as mentioned above, and qualitative bottom up emergent coding of recurring themes. When working based on audio or textual data only, it is challenging to represent the multiplicity or layering of voices behind individual themes and topics, to make visible the qualitatively rich patterns that lie behind the broad strokes quantitative word frequency or sentiment analysis. Visual art, both comics and portraits, is able to smoothly (re)combine these different voices or to (re)establish the chronological sequence of events in a narrative related in a nonlinear fashion. Further, in the case of comics and cartoons it is possible to create common ground for a variety of audiences by providing both visual and textual elements with information that explains why this narrative is tellable, and that gives the necessary background information to fully understand the story. T1DM is (a) an invisible condition – from the outside, it is not obvious who has T1DM and who does not, nor is the amount of work it takes to manage the condition – and (b) T1DM comes with a high mental and emotional load. Participants emphasise the emotional toll this takes. Participants note that there is still stigma attached to T1DM. They see this stigma as caused by a lack of information and understanding in the general public. Despite T1DM being so potentially all-consuming, participants repeatedly highlight ‘I'm a person first and a diabetic second’, ‘Diabetes doesn't define me’, ‘Diabetes is just a quirky thing my body decided to do’. Participants frequently report feeling alone and isolated, and underline the importance of peer support and of talking to someone else who ‘just gets it’. Along the same lines, they advocate for more mental health support from their healthcare teams and note that in medical consultations, clinical outcomes tend to be foregrounded, while for people living with the condition the emotional and practical challenges of day-to-day management are of greater concern. They also note that there is still a pervading notion of blame and (under)achievement in many consultations, which they find unhelpful. There are several recurring narratives: The same participant occasionally tells the same story in three or four different contexts. There are also stories that are very similar across participants. These findings can be summarised as a set of issues that speak to different target groups and can be formulated as clear messages to these groups. These messages are presented in table 1: The word clouds (Figures 1 and 2) give a first visual impression of these themes and their relative weights (font size of the words is linked to the word's frequency), but they still primarily rely on language to convey information. Art is increasingly used in science communication, especially in what has become known as Graphic Medicine (Anderson et al., 2016; Czerwiec et al., 2015; Kearns & Kearns, 2020; King, 2017). Visual art has been shown to effectively communicate information and aid retention of new information (Furuno & Sasajima, 2015; Moll et al., 1977; Spiegel et al., 2013; Tekle-Haimanot et al., 2016), emotionally and affectively engage the audience (Leung et al., 2017; McNicol, 2017), and engage typically hard-to-reach target groups with lower (medical) literacy skills (Anderson et al., 2016; Leung et al., 2014; Wang et al., 2018). In the context of Graphic Medicine, art works tend to be created for the express purpose of communication rather than growing out of a separate research project. Researchers in sociolinguistics, at the broadest level, tackle questions about language and society and rely on speech data, including data from marginalised groups. Giving back and giving a voice to these populations who make their voices and stories available to research is a long-standing desire within sociolinguistics. So far, such activities have primarily focused on creating awareness, educational materials, and speaking up in court cases (Hudley, 2008, 2013; Labov, 1982; Rickford, 1997; Wolfram, 1993). The present project joins Graphic Medicine with communicating findings based on sociolinguistic data, tapping into the documented potential of art to engage non-academic groups, convey informational content and elicit affective responses. In the present context, where data and stories stem from 16 different individuals, visual art furthermore opens up the possibility to smoothly layer and integrate different voices to create a representative image of a shared experience. With respect to the relationship between data analysis and the creation of the art work as well as putting on the exhibition itself, the process of creating the travelling exhibition grounds the analysis in the ‘big picture’ – art presents a holistic image that shows how different themes are related to each other, while the academic analytical approach often necessitates an analytical separation of individual categories. Working with artists to identify stories or themes and situations to be trans-mediated into comics or portraits can become part of the analysis and make accessible different approaches to theoretical, analytical and practical challenges. What is a story and what constitutes a tellable event? What is the temporal sequence of events in a narrative, and in which order are they related orally? How can we integrate different voices when representing the same or similar narratives or when summarising themes? I will discuss synergies arising from the interaction between sociolinguistic analysis and the creation of art based on examples of portraits and comics in this exhibition. A travelling exhibition offers a great degree of flexibility with respect to where and how it is presented, and thus which stakeholders can be addressed (people with T1DM, family and friends, healthcare professionals (HCPs), researchers, diabetes charities and stakeholders, the general public). The modular design of the travelling exhibition that combines portraits, comics, original audio snippets, textual transcripts of these verbatim quotes, and written pieces to accompany each art work further facilitates different ways of engaging with the materials: For example, peer support groups (especially with families and children) could use the art as a conversation starter amongst themselves or when engaging with the public. Both the portraits and the comics might be used with children to facilitate conversations and to creatively engaging with their experience (art therapy, see Gladding, 2016), and the more content-focused comics could be useful in diabetes education courses to illustrate the close links between the emotional, social and medical aspects of the condition. The project presented here needs to consider two key ethical questions: consent and participant anonymity on the one hand, and the ethics of representation as well as co-creation on the other. When taking part in the original study, participants consented to the data being kept permanently in University of Edinburgh archives and used for the specific research project which made them. They also agreed to the recordings and analyses being used for teaching or research purposes and in professional presentations and publications. The exhibition project is considered to be an analysis derived from the original research project. Nevertheless, all participants were contacted before embarking on the artistic interpretations so that any potential concerns could be raised. The portraits and comics were created without drawing on physical representations (i.e. photos) of the participants to safeguard their anonymity.1 The ethics of representation and of co-creation are more complex. The exhibition makes the invisible visible by visually representing the experience of individuals living with what is considered a hidden disability (Valeras, 2010). In this process, it was important to ensure the exhibition speaks ‘with’ and not ‘for’ the community and appropriately portrays their often marginalised experience (Burn et al., 2001; Hudley, 2013). Therefore, all art relies closely on the participants’ voices in drawing on verbatim quotes from the data. Occasionally, several people's reported experiences are combined into one portrait or comic. This layering of multiple voices – the participants’, the researcher's and the artist's – leads to a picture that goes beyond the original text. To avoid misrepresentation, I employed two strategies: I organised a workshop that brought together participants and artists and I also drew on my twofold role as a researcher and community member who lives with T1DM herself and. In the workshop, the overall project concept and first drafts of four art works were presented to the four participants. This was followed by an open-ended discussion about what the participants considered important with respect to representation, and any issues they saw. Further, the artists had the opportunity to ask the participants questions that were raised but not answered within the original recordings. This dialogue between community members, artists, and myself as both researcher and community member helped me ensure that my own perspective did not take priority over the participants’, something I also paid close attention to in working with the original data. How do we actually get from 24 h of recordings to a set of portraits and comics? What are the communicative affordances of these different forms, and how is the creative process linked to research on the data? In the following sections, I discuss the dialogic process of creating the portraits in collaboration with Alpo Honkapohja and the comics in collaboration with Alex Lorson, as well as the emerging synergies between sociolinguistics and art. The portraits showcase the diversity of participants with respect to their age, life stages, and the types of activities they enjoy. They underline that the participants are ‘people first’ and ‘people with diabetes second’ (Lavina, age 49), and illustrate at least some of the emotional and social experience of living with T1DM. As an artist, Alpo was able to approach the interviews from a holistic perspective and with fresh eyes and ears. He listened to the 16 interviews and noted themes, statements, and emotional undercurrents that struck him. Relatively soon two types of portraits emerged: one set foregrounding the emotional state of the participant portrayed and their attitudes towards technology, and one set foregrounding the day-to-day and social aspects of living with T1DM. One example of each will be discussed below. Once Alpo had created the portraits, I illustrated each art work with at least one original quote from the data. At this stage, three key synergies of this collaboration between sociolinguistics and art became evident: (1) the portraits show a holistic image of the participant, highlighting intersecting and layered key topics. This complex relationship between emotions, diabetes distress, diabetes acceptance, and attitudes to technology had to be sacrificed at least temporarily in the process of detailed coding for analysis. Working with art and linguistic data grounds the analysis process in the larger picture. (2) The portraits allow for the smooth combination of multiple voices into one, highlighting the commonality of their experience. This is also possible by combining text and audio snippets, but different voices would always be associated with different individuals. (3) It was far more difficult to develop ideas for portraits for some participants than others. This highlighted avenues for future research, for example with respect to how and how openly participants talk about their experience, what they chose to share and what they did not articulate, be it because they were unable or unwilling to, or that these experiences did not translate into words. ‘I feel it'd make – it'd make me more diab- not more diabetic, make me feel like, a more dependent’ or ‘[…] if I got the pump, it'd make me feel more paranoid with my diabetes. Having something actually connected to my body. Whereas, if it's not connected to you, you feel quite normal. Unless your bloods are high or hypo.’ Similar sentiments are voiced by other participants, for example his interlocutor Rose (age 24): ‘it'd make it more real, cause it's there constantly, all the time. Like a constant reminder that you're diabetic’. These concerns are acknowledged by participants like Lily (age 32) who are comfortable and confident users of diabetes technology ‘I mean I think it is another mental health thing to be permanently attached to something. But […] a lot of the time I really like it.’ The portrait (Figure 3) visually captures Darren's (and others’) overall emotional distress in the dark colours, shading, and ragged lines, as well as his issues with diabetes technology that are closely linked to accepting and integrating the condition into their concept of self (Balfe, 2009). This merging of voices to convey different levels of affect and emotionality into a cohesive whole is challenging when working with audio and textual data. Analysts and artists draw on a set of extracts in which participants discuss their attitudes to technology, often including comments about their overall attitude towards living with T1DM. These extracts can be grouped according to technology use (yes/no) and affect (positive/negative/neutral). There is a clear relationship between negative affect to T1DM and technology with not using technology, as exemplified in the quotes from Darren and Rose. A sociolinguistic or discourse analysis focused primarily on the audio and textual materials allows us to outline the different perspectives on technology and overall life with T1DM taken by the participants. Visual art, especially the portraits, allow forcombining these perspectives into a cohesive story, layering different voices and perspectives to present even a counterfactual image (relative to the experiences shared by the participants): a person living with T1DM who struggles emotionally, rejects technology, but does have an insulin pump. This piece of art combines these experiences and attitudes, these emotions and everything that is between the lines, and transposes them into a portrait of one young boy who stands for one of the participants while simultaneously holding the discourse around negative attitudes towards technology. A text- or sound-based collage would need to somehow resolve the breaks between different participants’ voices and account for where Darren's story ends and somebody else's begins. The art work shows that one person's story can stand in for every person's story, leaving room for interpretation and for different foci – the technology, the emotional state, the age or the sex of the person portrayed – and for individual engagement with the piece. The same process outlined with respect to the portrait of Darren applies to the second cycle of portraits. The portraits in the second group focus on day-to-day activities and social life, picking up on emphatic statements like the ‘I'm a person first and a person with diabetes second’ or ‘Diabetes is just a quirky thing my body decided to do’ (Lavina, age 49). The portrait of a young woman meditating (Figure 4) thus shows a person living with diabetes. It is primarily based on Donna (age 24) mentioning that she has recently started attending yoga classes and finds the meditation at the end of each session really helpful when it comes to coping with the daily ups and downs of her blood sugar. At the same time, it contains voices, experiences, reports and stories from Connor, Lily, DaisyRae and others who also discuss the benefits of different forms of meditation and mindfulness while integrating other voices of people who describe being doubtful of or struggling with meditation. ‘I was just drained all the time and I just couldn't focus and but when I kinda started to like meditate like twice a day, like, I started being able to focus a lot more and I started like ken just generally I'm like happier and like don't know, just, just being a better person really. […] I guess just like so as long as I like exercise and meditate like er I I'm fine ((laugh)) fine, but if I don't do that it's like I start getting like stressed and a bit er anxiety.’ ‘Yeah, so for that moment that you're thinking of being outside,2 you're not thinking of being diabetic […] but then what's your sugars doing at that point when you're thinking about something else? You can't really afford to be thinking about something else ((laugh)) Like, no, right, that doesn't work.’ The portrait artfully combines those different voices by showing a meditating young woman, calm and at peace. At the same time, her diabetes emergency kit3 is at hand in the background, and she is surrounded by the bright outline shared by all people with T1DM in the series of portraits. In a textual analysis, we would have to juxtapose these perspectives, foregrounding the opposition between them rather than showing potentially fused states. However, it is perfectly possible to meditate and momentarily let go, while keeping a T1DM-related safety net in place – for some people in fact it might only be possible under these conditions. Visual art allows for such an integration of multiple voices and elements from different participants’ narratives or shared experiences into representations of a possible reality. In summary, the portraits foreground the participants as individuals with a social and emotional life, for whom T1DM is ever present in one way or another. The white lines around the individual people with diabetes make their invisible condition visible, as does the presence of a smaller or larger item related to T1DM in most pictures. Compared to textual representations, visual portraits make the combination of different voices into one easier and offer the audience one cohesive picture that is open to interpretation at a number of layers. In terms of synergies between artistic and sociolinguistic work, the portraits ground the analysis and frame it in a holistic big picture that shows how different themes are connected. Comics as a medium also enable merging different perspectives and voices into a representative whole, which others can project their experience onto and identify with. Unlike the portraits, the comics as visual narratives directly revisit oral narratives (Labov & Waletzky, 1966) presented in the interviews and conversations. From a sociolinguistic perspective, the combination of textual and visual elements makes it possible to integrate both traditionally ‘narrative’ segments and segments that might be considered as ‘soapbox’ (Labov, 2001), ‘accounts’ or ‘lectures’ (De Fina & Georgakopoulou, 2015) rather than stories. This invites theoretical and methodological reflection about what constitutes a story, which speech activities are similar to narratives, and where the definitional boundaries are placed and why. Trans-mediating narratives or narrative-like stretches into a comic makes evident knowledge and attitudes shared between the participants that usually remain implicit. Stories need a ‘point’, a ‘tellable’ (Sacks, 1995) – and what is worth reporting or how much accounting needs to be done for something to be accepted as reportable depends on the context of the interaction and the background knowledge of the addressee. However, these aspects of common ground and tellability usually remain implicit in the interaction. This makes them difficult to grasp – we “intuitively” know whether and why something is tellable, because we share a certain set of cultural assumptions and background information. When this is not the case, be it because we are crossing linguistic or sociocultural boundaries or because we are faced with a new disciplinary context or a social sub-group (think of children changing schools or adults moving jobs, maybe even industries), we need to work to understand what is a tellable event, why, and which pieces of background information we need to make such an assessment. The comics aim to (1) educate about T1DM, (2) make visible the mental load of living with T1DM, and (3) show people living with T1DM that they are not alone in their experiences. Compared to presenting textual or audio versions of the original narratives, comics easily catch the eye of the audience and invite them to engage with additional more language-based material if they so wish. The potential or intended audience of the comics is thus far broader than that of the conversations. Information that can be implicit in the original interactions therefore needs to be made explicit, for example by drawing on and integrating elements from non-narrative segments from one or more participants into the core narratives. This does not change the underlying temporality and sequence of events in the narrative. Rather, it adds a layer of explanatory background detail that is accessible in parallel and in addition to the story. Hence, similarly to the portraits, the comics are usually based on one primary narrative and integrate details and additional voices from other participants, emphasizing the commonality of the experience communicated. I will briefly present one of the ten comics in the series in order to illustrate the process of transforming oral narratives supplemented by additional quotes into comics. As a sociolinguist, this collaboration between art and sociolinguistics helps me reflect for example on different definitions of ‘narrative’ in interaction, on narrative structure, and in particular on epistemics – which stories get told to which audience, and how much explanatory background detail is included? The comic I would like to discuss here (Figure 5) picks up on a story told by Lily, a physician in her early 30s. It exemplifies the importance of considering epistemic access when transforming these narratives for an audience who does not live with T1DM. Lily says: I've been cycling to work and back, and I've got a wee pouch that is attached to the crossbar of my bike with an orange juice in it. I always leave it in the staff bike shed, and one day somebody nicked my orange juice. And I felt like writing on it – on the next one that went in, obviously not that one, that was gone – ‘This is life-saving medical orange juice! Please do not remove!’ Emma: And you have people, you know, I guess you know, work colleagues, friends, anyone who asks you, ‘Oh, so you know, what does what does it actually involve, you know, your diabetes?’ […] And it overwhelms that person even just hearing about it. […] Lavina: [We've] a major sort of like equation going on in the head so that I can go from guesstimating what is on that plate of carbohydrate, factoring what I'm about to go and do so that I can get a nice number to start off with, maintain that with a bit of a spike, and know that in between somewhere between four and six hours I'm gonna come back to roughly that same idea without going way high or way low. These and similar quotes from other conversations form the frame in which the comic strip embeds Lily's narrative. The mental arithmetic, the constant check-lists, and the need to always immediately respond to changes in blood glucose levels are made visible through the glucose trace in the top right corner showing the blood glucose levels changing throughout the day. Lily's thought bubbles and the small squares at the top of each frame track the items that Lily needs to remember and factor in. The comic thus makes visible the mental load of T1DM that Lavina, Emma, DaisyRae and the other participants describe and give the audience the necessary background to understand why the story about a stolen bag of orange juice is worth telling. From the perspective of narrative analysis, the comic teases apart and chronologically reorganises the temporal sequence of events presented in the talk – cycling to work, putting the bike in the bike shed, working, leaving, taking the bike, cycling back – including checking not only t" @default.
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W3188451715 title "Making the invisible visible: Sociolinguistics meets medical communication in a travelling exhibition" @default.
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