Writing Disability in Australia: Transmedial Potentials for Illness/Recovery Narratives

Abstract

In this paper I argue that extending the illness/recovery narrative through the transmedial mode allows for more diverse representation from patients and survivors, leading to greater understanding of varied stories and an enhanced version of Narrative Medicine. Using two transmedial case studies – Dakoda Barker’s threesixfive (2015) and my own interactive memoir How to Knit a Human – I frame my discussion through the lenses of Disability Studies, Mad Studies and Narrative Medicine. Threesixfive evokes Barker’s experience of living with a chronic health condition and the daily struggles and choices one must make throughout each hour. How to Knit a Human utilises choice-based digital storytelling to represent inconsistencies in memory and alternative pathways caused by memory-loss from psychosis and electroconvulsive therapy. I explore these transmedial potentials and encourage survivors to take power and agency in their own valuable lived experiences in order to transform the Narrative Medicine field, which usually only draws on traditional forms of storytelling. I assert that transmedial modes grant greater diversity and flexibility when wielded by survivors. Moreover, once these stories are experienced by others, stigma surrounding disability and/or madness will reduce not only in wider society, but in medicine, education and institutions.

In 2011 my outcome looked dire – I was an involuntary patient in a public psychiatric hospital, could barely manage colouring activities and my hospital file noted I had word finding difficulties as a result of numerous electroconvulsive therapy (ECT) treatments. Most debilitating was my short-term memory loss, which lasted for the following six months, and I had complete memory loss of the events that had led to my psychosis, including amnesia of my six-and-a-half-week hospital stay. A psychiatrist who was part of the Early Psychosis Team demonstrated deep empathy and understanding and I was shown how Narrative Medicine could work through the doctor/patient relationship, even if I did not know the name for it at the time. Rita Charon, who coined the term Narrative Medicine, explains that ‘using narrative knowledge enables a person to understand the plight of another by participating in his or her story with complex skills of imagination, interpretation and recognition’ (9–10). This understanding through narratives means that ‘vital insight’ is provided ‘into the lives of those who need treatment’ (Murphy et al. v). What this means for patients is better control and meaningful lives outside the diagnoses of the medical system.

My psychiatrist helped book me into the Mind Gym program, where twice a week I played specialised interactive computer games with memory and problem-solving components, and my concentration began to improve. My psychiatrist also encouraged me to return to university where I chose to study Creative Writing. My non-fiction, poetry, memoir and life writing enabled me to piece my self together over the years and, finally, I embarked on my PhD. Alison Faulkner, a survivor researcher and mental health trainer states that

the bureaucracy inherent in our higher education institutions does not lend itself easily to infiltration by ‘mad’ people. But we are getting there. More service users and survivors are teaching on mental health practitioner courses and more are studying for PhDs. (515)

When I first began my PhD in memoir, I did not know there would be opportunities to develop my life writing into a transmedial form that would open up further possibilities of understanding memory(loss). Transmedial storytelling enables survivors whose voices have been silenced to represent their lived experience by allowing the reader/player to be ‘actively involved in making plot choices at certain nodal points as they experience the narrative’ (Hutcheon 51). For the creator and writer, ‘everything has to be consciously designed’ (Eku Wand qtd. in Hutcheon 51). This paper argues that extending the illness/recovery narrative through transmedial forms enables representation of a greater diversity of experiences from patients and survivors and provides understanding through participation. It is only when institutions and society listen to this diversity, not just through traditional forms of storytelling, but through transmedial approaches, that stigma may be reduced in medicine and education.

Transmedial storytelling incorporates engagement with cross-media genres and art forms. Donna Hancox describes transmedial storytelling as ‘an innovative creative practice to challenge and shift existing views of writing for multiplatform projects’ (165). Hancox focuses on ‘elements of writing that are necessary for transmedia writing: participation and interactivity, design thinking, and world-building’ (166). I assert that the more immersive the story, the more likely the reader, participant, or viewer will forge understanding with the survivor’s lived experience. I explore this through two transmedial case studies: Dakoda Barker’s threesixfive (2015) and my own interactive memoir ‘How to Knit a Human’ that is being developed through my PhD.

Three theoretical lenses are applied throughout this paper: Disability Studies, Mad Studies and Narrative Medicine. Each lens brings a unique perspective that adds to my discussion and all three are relevant to my argument as a result of their focus on the value of the lived experience of the patient/psychiatric survivor. Faulkner defines experiential knowledge as lived experience and explains: ‘mental health knowledge is dominated by professional knowledge to the exclusion of the knowledge based on lived experience (experiential knowledge) that people with mental health problems can bring’ (500). Both survivor research and Mad Studies ‘foreground experiential knowledge in forging a new future for mental health knowledge’ (Faulkner 513). I align myself as having been mad and as having a continuing relationship with madness. When I use the term mad I refer to it in a way similar to how queer activists reclaimed the previously stigmatised word queer. For example, Rashed states that Mad Pride activists reclaiming the term mad ‘deprive it of its negative connotations and present the diverse phenomena of madness as sources of identity and culture’ (1). I also see myself as living with a disability. I disclose my disability and see it as a strength, with thanks to the writers who have written about their experiences, together with the work of disability studies scholars and disability activists. As Elizabeth Brewster asserts: ‘role models are particularly important for those who claim stigmatized identities’ (27). Margaret Price writes of the importance of ‘counter-diagnostic stories’ for survivors’ empowerment: ‘narratives written as counter-diagnostic stories can also be used to disrupt conventional dynamics of power’ (31). Price elaborates that writers with disability are

medicated against our will, written against our will, ostracized, disbelieved, institutionalized, abused. However, if we use counter-diagnoses to ‘vigorously contest’ (Wilson and Beresford 155) such measures, we will continue to move toward more robustly truthful ways of living and telling our stories. (31)

One way of storytelling is through transmedial forms such as electronic literature; the reader/player becomes immersed in the game/text created from the perspective of the person with experiential knowledge and their narrative is better understood.

An Investigation of Three Lenses: Disability Studies, Mad Studies and Narrative Medicine

Disability Studies, Mad Studies and Narrative Medicine focus on the value of the lived experience of the patient/psychiatric survivor and their narrative. Snyder and Mitchell suggest that literary narrative allows ‘an “intimacy” with disabled characters that is a “rare exception” amid the social marginalisation of people with disabilities’ (qtd. in Hall 36). When disability life writing is combined with transmedial modes, even more possibilities open up for the writer/creator, as I explore further in my case studies. Disability life writing is aligned with activism, and Alice Hall describes this ‘coming out’ as ‘an empowering act of celebration, of proudly naming and claiming a positive identity that counters histories of enforced silence’ (133–34). Activist Simi Linton defines Disability Studies’ aim as a move to ‘weave dis-abled people back into the fabric of society, thread by thread, theory by theory’ (518). By letting people who live with disability represent their stories on their own terms, forms including the transmedial mode will help to forge a better connection of understanding between reader and writer/creator.

Stella Bolaki states that literary disability studies can ‘engage with innovative, experimental and mixed or cross-media genres’ such as ‘artists’ books, textile art, comics and digital storytelling’ that ‘blur the boundaries of art, activism and autobiography’ (327). Readers and viewers become active participants ‘through physical handling, multisensory interaction, co-construction and collaboration’ (Snyder and Mitchell qtd. in Bolaki 328). Hall asserts ‘by studying disability in the context of the humanities and the arts, disability emerges not as a personal tragedy or medical issue but as ‘a fresh critical and creative category’ (qtd. in Bolaki 16). Moreover, by letting ‘people “enter” disability narratives’ the artist is ‘recreating a person’s experience for others to acknowledge and understand’ (Radley qtd. in Bolaki 335).

Disability Studies provides rich terrain for the transmedial form to flourish – not only by allowing people to enter narrative through creative forms including electronic literature, but in empowering the survivor to tell their stories on their own terms. This empowerment counters and contests stories that have previously been forced on survivors and patients by others, whether medical professionals or society. Additionally, as a researcher and writer who has experienced psychosis, I am interested in Disability Studies’ overlap with Mad Studies. Elizabeth Donaldson asserts that ‘a perusal of the scholarship discourages a conclusive stance on whether or not madness can or should be considered a disability’ (15). She states that her collection Literatures of Madness: Disability Studies and Mental Health is ‘a point at which to meet together collectively, to commune, build on synergies, and honour differences, before continuing on the longer journeys forward’ (3). PhebeAnn Wolframe’s essay in this collection maintains that describing experience ‘is not included as a way of trying to pin madness down; rather, these descriptions are queries, landscapes, emotions and textures’ (36). This allows for complexity and validates multiple identities as possibilities within these experiences. Brewster states that the motto used in the disability rights movement – ‘nothing about us without us’ – ‘is useful for psychiatric survivors and disabled people alike. It applies to both groups’ desire to be seen as authorities on their own experience and to be included in individual and large-scale policy decisions’ (16). While this applies to both groups, Brewster demonstrates that tensions between Mad Studies and Disability Studies show ‘claiming disability identity on the basis of madness is contested ground’ (3).

For instance, Brewster notes that ‘many psychiatric survivors do not identify as being disabled, and likewise many disabled people do not identify as psychiatric survivors’ (qtd. in Donaldson 3). Brewster asserts that voices speaking from the combined position of Disability Studies and Mad Studies are largely absent and affirms that these two perspectives are ‘necessary, particularly because publications within disability studies increasingly include madness, yet few writers candidly navigate the historically uneasy mad/disability relationship’ (26). She argues that ‘drawing boundaries between what counts as madness and disability causes personal pain. Regardless of how one identifies, purchasing privilege at the expense of another identity causes damage’ (27). This then raises the question, as Brewster states ‘what do you need to value to work in the field? If we have more scholarship that self-consciously grapples with disciplinary fit and complex identifications, our questions might shift to these’ (27). By acknowledging the complexities within Mad Studies and Disability Studies, together with identity, a shift in questioning, growth, and inclusivity becomes more needed.

Dual identities are something that survivors who are researchers must navigate carefully, in case of judgement or dismissiveness by those who have not experienced mental illness. Survivor researchers Angela Sweeney and Peter Beresford argue that once our knowledge is not judged narrowly through our identity, our position in the research landscape will be more secure. Until then, academic research will continue to privilege knowledge that contains and controls the people the research intended to benefit (Sweeney et al. 5). Consequently, while researchers who disclose their mental illness face risks in the form of stigma, Mad Studies, together with Disability Studies and its creativity, aims to change this perception.

Narrative Medicine is another field that aims to change perception and understanding through storytelling. I argue that by incorporating transmedial modes into the more traditional form of storytelling this field utilises, a more inclusive, beneficial and diverse version of Narrative Medicine will endure. Charon coined the term ‘narrative medicine’ as

medicine practiced with these narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness. As a new frame for health care, narrative medicine offers the hope that our health care system, now broken in many ways, can become more effective than it has been in treating disease by recognizing and respecting those afflicted with it and in nourishing those who care for the sick. (4)

This definition places emphasis on what Felice Aull states as ‘an emerging new paradigm’ where, instead of doctors’ interactions with patients being ‘objective, concerned but detached’, their ‘engagement – emotional and intellectual – is valued and encouraged’ (1). Furthermore, Aull speaks of literature’s necessity in this paradigm ‘as educators develop methods to teach and promulgate the new paradigm for healthcare practice, literature and the arts are increasingly being enlisted in this endeavour’ (1). Aull iterates that ‘fiction, memoir, poetry, and other genres often bring powerful stories to readers. These genres engage the emotions and expose readers to worlds outside their own experience (1).’ Charon likewise asserts that

to adopt the model of narrative medicine provides access to a large body of theory and practice that examines and illuminates narrative acts. From the humanities, and especially literary studies, physicians can learn how to perform the narrative aspects of their practice with new effectiveness. (1)

I argue that Narrative Medicine can become even more effective by empowering patients to tell their stories through the diversity of transmedial forms. John Murphy et al. assert ‘the basic principle is to include more perspectives, with equal legitimacy, in the practice of medicine, that is, to break the imperial grip of the medical model and the reign of the claims and practices associated with this outlook. No perspective is now inconsequential’ (12). Empathy changes the interaction between doctor and patient by putting the patient at the centre and looking through the patient’s perspective. This is important because, as G. Thomas Couser warns, ‘ultimately, illness and disability narrative are too important to be left to physicians; as much as possible, such narrative should be authored by those with the conditions in question’ (‘Body Language’ 3).

Because Narrative Medicine places emphasis on empathy between health professional and patient, in order to define empathy and its subtleties, I turn to philosopher Martha Nussbaum. Nussbaum states that ‘empathy is simply an imaginative reconstruction of another person’s experience, whether that experience is happy or sad, pleasant or painful or neutral’ (301). She interrogates this definition further by asking ‘how does empathy itself operate?’, and answers: ‘empathy is like the mental preparation of a skilled (Method) actor: it involves a participatory enactment of the situation of the sufferer, but is always combined with the awareness that one is not oneself the sufferer’ (327). I argue that Narrative Medicine’s claims for and emphasis upon empathy can be pushed further through the participatory nature of the transmedial form. For instance, transmedial storytelling and its ability to parallel the experience of the survivor’s story means that Narrative Medicine is not confined to one idea of what an illness/recovery narrative can be. Rather, it becomes more inclusive, incorporating more diverse storytelling modes.

Extending the Typology of Illness/Recovery Narratives

The first step to inclusivity involves approaching stories by survivors and patients beyond what others consider an illness narrative. Pam Harvey asserts that while Arthur W. Frank ‘presents an illness narrative typology in his book, The Wounded Storyteller (1995)’, he only names three categories as possibilities for this narrative typology: Restitution narratives (‘for every suffering there is a remedy’); Chaos narratives (‘the body has no agency and the self has no voice’) and Quest narratives (‘the storyteller has a voice’) (emphasis in original). Harvey adds ‘what is absent within Frank’s typology are narrative types that acknowledge that some illnesses are present but relatively stable and have already had significant influence upon an individual’s identity development’. Therefore, extending the typology of what can be considered recovery or illness narratives will allow for more survivors’ voices to be heard.

Joy Llewellyn-Beardsley et al. state that ‘practitioners may be limited if their conceptualisation of recovery narratives is narrow, and the impact of narratives may be limited if narrators feel no connection with the narratives they access’ (24). Woods raises concerns about the unintended potential ‘harms’ from ‘disclosing one’s experiences of mental distress, but of doing so through the form of Recovery Narratives shared in mental health settings’ (1). She asserts that ‘the Recovery Narrative constrains and restricts which experiences can be shared’ (1). This is why I encourage writers and survivors who wish to write their memoir, to do so on their own terms and extend what the recovery narrative can be. For instance, rather than fixed dominant narratives, Llewellyn Beardsley et al. argue that recovery narratives can be ‘diverse and multidimensional. They may be non-linear and reject coherence. Approaches to supporting development of recovery narratives should expand rather than reduce available choices. Research into the narratives of more diverse populations is needed’ (1). Moreover, Llewellyn-Beardsley et al. affirm that there are all sorts of narratives, including ‘endurance narratives’, which ‘present recovery as being possible in the midst of considerable chaos’ and that ‘chaotic narratives may still be recovery narratives’ (20–21). They add that:

people experiencing psychosis narrate recovery with the same characteristic features and multi-dimensional meanings as other narratives. This finding challenges the stereotype of people experiencing psychosis as being incompetent or incapable of insight into their experiences. It supports moves to broaden the concept of ‘insight’ within psychosis services to incorporate the ‘narrative insight’ or explanatory frameworks of those experiencing the psychosis. (21)

In broadening the concept of insight within the hospital system and extending the frameworks to include narrative insight for those who have experienced psychosis, a better understanding of the patient experience and illness narratives can be reached. This enables more diversity as survivors tell stories on their own terms, rather than being restricted by preconceived ideals about recovery or illness narratives. Moreover, rather than traditional modes of storytelling, transmedial narratives by patients can be utilised in ways that enable Narrative Medicine to function at a higher level of understanding through interactivity, immersion and participation. I argue these forms of digital and interactive narratives would be particularly useful for training doctors and medical professionals in order to develop greater empathy for a diversity of patients. Twine is one such form of electronic literature that I examine for its transmedial storytelling potentials.

Transmedial Potentials and Twine

Twine is a free ‘browser-based writing tool’ that allows ‘authors to create interactive narratives’ (Marsh et al. 91). The homepage of the twinery.org website, where individuals can download the software, describes Twine as:

an open-source tool for telling interactive, nonlinear stories. You don't need to write any code to create a simple story with Twine, but you can extend your stories with variables, conditional logic, images, CSS, and JavaScript when you’re ready.

Twine publishes directly to HTML, so you can post your work nearly anywhere. Anything you create with it is completely free to use any way you like, including for commercial purposes. (1)

Merritt Kopas outlines that since Twine’s creation by Chris Klimas in 2009, ‘Twine has been free for anyone to use and modify’ and its ‘financial and technical accessibility’ are vital reasons for experimentation and use, ‘especially among economically marginalized, non-traditional game designers’ (11).

Leonardo Flores, President of the Electronic Literature Organization, defines electronic literature such as Twine as ‘a writing-centered art that engages the expressive potential of electronic and digital media’ (1). Electronic literature can integrate ‘computation, multimedia, interactivity through a variety of input devices, networked data, and digital culture itself. As it grows and matures, digital culture itself is an increasingly important influence in the creation of electronic literature, especially in its third generation’ (3).

Flores defines the three generations of electronic literature as each generation building ‘upon previous and contemporary technologies, access, and audiences to develop works and poetics that are characteristic of their generational moment’ (3). Moreover, in terms of accessibility and distribution, he states that ‘software tools at their disposal are varied and increasingly lower the barrier to entry, with programs like Twine, Unity, Javascript Libraries, simple and free publication platforms (like Cheap Bots, Done Quick! and Philome.la), and social media apps like Vine, Instagram, Snapchat, GIPHY, and others’ (4). He also articulates that first and second generations of electronic literature continue in the third generation, for instance, ‘bots, electronic poetry, videopoetry, hypertextfiction, mobile and locative works, virtual reality, augmented reality’. These ‘are revitalized as they find new forms in the third generation with Twine games, Twitter bots, Instagrampoetry, GIFS, and image macro memes’ (4).

Kopas asserts that ‘Twine readers/players can experience a narrative in a way that would be difficult or impossible to reproduce on paper’ and that ‘authors are doing things with Twine that aren’t possible with traditional text’ (11). This is not to say that interactive storytelling is more imaginative than the traditional print medium – just that it is different. As Hutcheon explains, ‘Neither the act of looking at and interpreting black marks – words or notes – on a white page nor that of perceiving and interpreting a direct representation of a story on the stage or screen is in any way passive; both are imaginatively, cognitively, and emotionally active’ (23). However, I argue that transmedial narrative can provide a more diverse range of experiences and perspectives outside those who only perceive storytelling through writing. Hutcheon elaborates that ‘participatory modes’ such as ‘role-playing or puzzle/skill testing’ is ‘active in a different way’ (23). For instance, Brendan Keogh provides examples of this participatory mode through embodiment and asserts:

The augmented me ‘is “you” and “You” as the narrator distinguishes us while also drawing us together’ and making us ‘feel some liminal and flickering sense of presence through the screen’. This idea of ‘embodiment … distributed across both sides of the glass’ is a phenomenological concept of presence that reflects the mutual incorporation of player and game, of reader and digital-born text (qtd. in Bailey et al.)

Threesixfive, an interactive text by Barker, similarly navigates embodiment through the use of the second person ‘you’. It also incorporates other aspects of life writing, including narrative perspective.

threesixfive (2015) by Dakoda Barker

Barker is a researcher who lives with Chronic Health Conditions (CHCs) (‘The Mighty Spoon’ 141). Threesixfive portrays Barker’s experience of trying to manage daily tasks while dealing with ‘pain, fatigue, and a lack of motivation brought on by CHCs’ (28). The title threesixfive references the 365 days in the year and that ‘one needs to manage CHCs’ (Barker 81). To access and open threesixfive, I headed to https://dakodabarker.com/threesixfive. The word ‘you’ is highlighted at the top of the page. When the player clicks on ‘you’, Barker acknowledges the ‘uncertainty around the owner of the pronoun “you”’ and attempts ‘to offer the player alternative ways to interpret the protagonist character’ (qtd. in Marsh et al. 97). Magdalena Rembowska-Płuciennik argues that the second person further creates ‘a stronger connection between player and protagonist’ and ‘the growing popularity of second-person narration in contemporary print literature is linked to the rapid development of multimedial storytelling strategies and new technological environments’ (159). Moreover, Price states that disability life writing can ‘employ you in a way that disrupts that dynamic and relocates the dominant gaze’, thereby creating a shift of power with the reader and asserting authority (27).

As new media expands, ‘second-person narrative stimulates a specific mode of reader involvement, rooted in participation rather than immersion’ (Rembowska-Płuciennik 159). This echoes Bolaki and the concept of how people ‘enter’ disability narratives (Bolaki 335). By using second person and creating participation through ‘the art of witness’, Barker recreates his experience for others ‘to acknowledge and understand’ (qtd. in Bolaki 335).

For instance, Barker writes in an introductory passage of threesixfive:

You are not you. You are me. Or maybe you are you. Who can really say, for sure?

You are whoever you want to be: me, you, your neighbour, that one cousin you only see at Christmas.

You are a regular human being with regular human problems.

Or, are your problems, perhaps, irregular and unusual? Maybe there's more to these struggles than meets the eye?

That's a thought for another time; for now, we need to get back to it.

Clicking on get back to it takes you to the opening passage:

After a long, tiresome day of achieving little, you want to make the next 24 hours count for something. Sitting around and feeling rubbish is off the menu; it's time to show everyone — and yourself — that you're actually a functional human.

A list forms around the themes of energy, exercise, cleaning, classwork, socialising and relaxing, along with options of what to do first. Arising from Barker’s attempt to map the tasks required of him in a twenty-four-hour day, the encounter with him in this Twine platform leads to an altered perception of embodiment. In other words, as Alan Radley reminds us, ‘illness accounts are always more than “stories about”: they are also ways of “seeing as”’ (791). For example, each rereading of the hypertext becomes the next day, and the cyclical experienced replay is what adds to this perception of understanding. Therefore, Barker’s transmedial work of cyclical life writing shows the impact of narrative perspective of the writer.

This impact comes in the form of understanding that benefits both writer and reader/player. For example, Katryna Starks states that ‘the creation of text-based, choice-driven games presents an opportunity for therapeutic narratives that benefit the game authors as well as potential players’ (qtd. in Marsh et al. 89). In a text that originated from Barker’s practice-led thesis, Barker asks: ‘How can I develop serious games that help to better represent characters with chronic health conditions?’ (6). He observes that ‘videogames infrequently represent characters with chronic health conditions’ and that ‘such representation can help individuals to discover their own identity and empathise with others’ (1). This representation and possibility for empathy holds value not just for the author and readers but also medical practitioners who engage with the work. As Hilary Clark states

we should listen to personal narratives of illness and disability — really attending to them on their own merits, as opposed to using them in order to come to diagnoses and impose regimes of treatment — because such narratives give voice to the ill, the traumatized, and the disabled, those trying to make sense of catastrophic interruptions or shifts in their lives and help them navigate the bewildering, impersonal context of medical diagnosis and treatment. (qtd. in Couser, ‘Illness’ 2)

In order to recreate the experience of living with chronic health conditions, Barker used several design choices: start time, sleep, visible attributes, and the inability to form a perfect strategy. Each activity ‘carries equal probability for failure or success’, which gives ‘the additional benefit of demonstrating to the player that someone with depression, anxiety, and chronic pain may not be able to achieve their goals even if they can determine the best possible approach to the challenges that lie before them (Barker qtd. in Marsh et al. 97). For example, in threesixfive a reader gets points for achieving energy, fitness, relaxation, socialisation, classwork and housework goals. Barker explains: ‘in creating threesixfive, I wanted to find a way to process this experience – I wanted to find a way to make my life “winnable” – while also creating an interactive narrative that could help to educate people and generate empathy, for others as well as myself. (qtd. in Marsh et al. 96).

Within Disability Studies, scholars Snyder and Mitchell argue that literature ‘provides a unique location in which imaginative identification may be possible’ (qtd. in Hall 35). For instance, they suggest that narrative plays a vital role, and claim that:

to represent disability is to engage oneself in an encounter with that which is believed to be off the map of ‘recognizable’ human experiences. Making comprehensible that which appears to be inherently unknowable situates narrative in the powerful position of mediator between two separate worlds. (qtd. in Hall 35)

Threesixfive allows the reader to approach an understanding of that which is ‘unknowable’, namely the frustrations and difficulties of living with a chronic health condition. For example, Barker programs Twine so that the reader ‘cannot form a perfect strategy’ (‘The Mighty Spoon’ 74). While this may sound counterintuitive, Barker expresses the need to ‘look beyond the traditional power fantasy’ in order to communicate the key messages and that ‘characters with CHCs do not map to the traditional models of progression’ (‘The Mighty Spoon’ 23). As a reader of Barker’s threesixfive, I found that, although I was used to pacing in real life with my own fatigue caused by antidepressants and anxiety, I had to still work hard at pacing in the text. For instance, it took me over six attempts as a reader to get through the twenty-four-hour day. I discovered that naps and exercise, and the ratio in which to do them, played a huge part in getting through the day.

Barker explains that ‘sleeping takes up many of the limited hours and therefore restricts how many other activities can be completed; however, sleep is vital to ensuring that the player-character can function for the duration of the twenty-four-hour period’ (‘The Mighty Spoon’ 24). He extends this thought with: ‘I needed to understand the lived experiences of people with CHCs and how I might (suitably, appropriately) translate those experiences to videogame actions or experiences’ (24). This is evident in the looping ending, which Barker designed to ‘create a sense of repetition and familiarity that edges towards tedium — managing CHCs is not an enjoyable experience and, therefore, does not need to be fun’ (78). Moreover, Barker notes how each ‘ending’ links back to the opening passage, which ‘reinforces the cyclical nature of managing a chronic health condition — it never truly “ends”’ (81). These factors form a better understanding of and empathy for the condition, as the reader participates in the text, illustrating Bolaki’s assertion that digital storytelling can bring about greater engagement (327).

Again, as I read through and engaged with Barker’s threesixfive, I discovered that each outcome to an activity is different, demonstrating how no two days are the same. For example, a run or stretch the previous day gives the reader great pain, but on another day, gives the reader confidence, energy and points. Over several attempts of my play-through of threesixfive, I received the following three responses from Barker’s Twine when trying to stretch and complete strengthening exercises:

Playthrough #1

You start doing those strengthening exercises but, before long, your body is in agony. Aren’t these supposed to stop the recurring pain, not make it worse? Maybe you’re doing something wrong, but you won’t be able to check what that is until you next meet with the physiotherapist again. In the back of your mind, you consider trying again later in the hope that your muscle memory helps you perform the exercises properly next time, but that’s something to deal with later. In any case, quit now before you really hurt yourself.

Playthrough #2

Stretching always seemed boring but today you’re loving it. Your muscles feel better for it and you realise you’re a little more flexible than you remember. Good news! But don’t do too much and ruin it.

Playthrough #3

You start doing those strengthening exercises the physio gave you. And while they hurt, you don’t feel too sore. In fact, you feel pretty good. It might be in your head, but you start to feel stronger already. You feel tough! If you can keep this kind of success going, maybe you can move past all these physical problems. And then maybe everything else will get a bit easier, too. Awesome!

As Rebecca Garden asserts: ‘renegotiated endings are a significant feature of contemporary disability life writing’ (qtd. in Hall 142). These different endings demonstrate the malleability and changeability of perspective and outcomes on different days of living with a disability. Barker shifts the blame away from the reader and outlines that ‘“success” and “winning” might be as simple as not losing hope’ (‘The Mighty Spoon’ 74–75). Through his process of sharing threesixfive online, Barker comments the text ‘has been met with positive anecdotal comments from players who enjoyed the experience of seeing themselves or their struggles represented’ and that ‘this feedback validates my experiences and allows me to feel understood’ (qtd. in Marsh et al. 97–98). As Hall states: ‘narrative acts as a bridge between individuals’ (36). As a result of Barker naming his connection to CHC’s, through his research and transmedial creation, he has succeeded in his goal of developing a text that helps to better represent characters with chronic health conditions and allows the reader to glimpse what it is like to live with a chronic illness.

How to Knit a Human (Interactive Text) by Anna Jacobson

Fig. 1.
Fig. 1.

Fig. 1. How to Knit a Human from: Jacobson, Anna. ‘Homepage of Twine Narrative for How to Knit a Human’.

The transmedial mode of How to Knit a Human opens with a gif of a girl lying in a hospital bed, her hair growing out and curling around her like a forest. The story branches from here and coils back on itself in parts as the reader/player makes their choices. As I developed the story, I created inventories of the objects I found in my hospital bag and the women I remembered on my ward. The creation of the interactive text reveals the flexibility of the transmedial form, which allowed me to include as many images as necessary and create animated gifs. As well as drawing on Barker’s use of the second person, I incorporated Barker’s approach to preclude a perfect strategy or correct order to the narrative. The transmedial storytelling lets the reader explore and gain more knowledge on further readings and retellings, for no matter which choice the reader makes, the player is still pushed towards the continuation of the story.

The creative process for How to Knit a Human began with my adaptation of my memoir. Hutcheon defines adaptation as ‘an act of appropriating or salvaging, and this is always a double process of interpreting and then creating something new’ (20). As I was adapting my own traditional memoir into a transmedial work, this was doubly interesting as an investigation into the differences between the two forms. In the manuscript, representations of my memory are braided across four selves. However, in the transmedial form, my selves both branch off and merge. This demonstrates the significance of how, in the transmedial form, I was able to open up the text into choices the reader can make – choices that exist for me as questionings in my memory. The reason I offer choices and alternatives in the transmedial version, and do not meditate on the possible choices in my traditional manuscript, is because when I woke up in hospital, there seemed a set of definite events that I experienced as a character. It was only my future self in the transmedial story that began to realise the alternatives, for example, of ‘corridor or shower’.

You are in a white room, and something has changed.

Something has happened to your memory.

walk to the shower?

or walk down the corridor?

My experience with memory loss is exemplified in the transmedial form through its choice-branching storytelling mode. Mapping out these choices in the user back end of the Twine interface made it easier for me to see how the narrative branched out, as shown in the figure below.

Fig. 2.
Fig. 2.

Fig. 2. Twine (back-end of programming) from: Jacobson, Anna. ‘Twine branching choices for the beginning of How to Knit a Human’.

In the creation of How to Knit a Human I wanted to make sure my interactive memoir was as accessible as possible. I included accessibility options such as save options for readers to break up the screen time, and easier alt text coding for creators to make image descriptions (‘Accessibility Testing Report’). I created a dark background to decrease eye glare and strain and included a content warning for madness and ECT. As I do not remember the sounds from my time in hospital, I have not included sounds, and feel a quiet environment adds another layer to the theme of memory loss and its complexities. Doctors need to know the different types of patient experience, which included for me this lack of memory surrounding sound. This draws on the Mad Studies research by Sweeney and Beresford that encourages ‘knowledge generation’ by survivors and the engagement in research based on the patient’s lived experience. They affirm that ‘when disabled people and health and social care service users and survivors engage in research ourselves, we are challenging these norms, and challenging our historical exclusion from knowledge generation’ (1).

Try to escape
or accept things are out of your control

escape

You try to move but you can’t. Your limbs are heavy, the table you seem to be lying on is too high up, and you are surrounded.

As a writer and artist, I am able to provide juxtaposition and play poetically between text and image. I scanned pages from my visual diary and created a digital version that the reader could flick through as clues to my experiential knowledge. The reader is taken through my hospital experience, psychiatrist appointments and meetings with my case manager. I knit myself back into my friendship group through Crafternoons with my friends and attend Mind Gym classes to help improve my memory. The reader can immerse themselves in these parts of my story and participate in the losing and regaining of agency through my narrative perspective, in order to gain a better understanding of my experience.

Conclusion

I went from needing memory games for my recovery in 2011, to creating my own transmedial choice-based text in 2020 that demonstrated my experience of memory loss. Through this transmedial form, I drew upon my experiences to utilise multiple choices that link to different alternatives and possibilities that exist in my memory, thereby moving beyond the capabilities of a traditional text. This is not to say that transmedial works are better than traditional texts, but rather that they allow for a greater diversity of experience beyond usual forms of storytelling and writing in Narrative Medicine. My case studies threesixfive (2015) by Barker, and my own interactive text How to Knit a Human demonstrate how understanding is generated through participation in and embodiment of the transmedial narrative. Both works parallel the creator’s experience through form through the cyclical events of threesixfive and my own choice-based narrative based on memory(loss) from psychosis and ECT in How to Knit a Human.

Brewster acknowledges that ‘when we choose not to name our relationships to disability in our scholarship, we limit opportunities to serve as role models and to build community because others simply do not know why we have come to the field or how we imagine it’ (27). Thus, while there are prejudices and stigma attached to labels and certain health conditions, when researchers name their connection to disability and/or madness, they can build understanding with others. I encourage survivors and patients to explore transmedial storytelling and take power and agency in their own valuable lived experiences, not only for themselves and others, but to reduce the stigma in wider society, medicine, education and institutions.

Acknowledgements

This paper is part of my PhD research (Queensland University of Technology), which is receiving support through an Australian Government Research Training Program Scholarship. I would like to acknowledge the valuable feedback and guidance on my research and paper by Associate Professor Kári Gíslason and Associate Professor Lesley Hawkes.

Published 23 May 2022 in Special Issue: Writing Disability in Australia. Subjects: Digital literature/s, Disabled writers, Mad studies.

Cite as: Jacobson, Anna. ‘Writing Disability in Australia: Transmedial Potentials for Illness/Recovery Narratives.’ Australian Literary Studies, vol. 37, no. 1, 2022, doi: 10.20314/als.d4b646ecb8.