Please let me know if you have any problems obtaining a copy. If you are working or studying at a university, please consider requesting that your instution’s library get hold of a copy for youby using the information in the link above.
“This book illuminates the lived experience of a group of primary school children engaged in virtual world play during a year-long after-school club. Shaped by post-structuralist theory and New Literacy Studies, it outlines a playful, participatory and emergent methodological approach, referred to as ‘rhizomic ethnography’. This ‘hybrid’ text uses both words and images to describe the fieldsite and the methodology, demonstrating how children’s creation of a digital community through Minecraft was shaped by the both the game and their wider social and cultural experiences. Through the exploration of various dimensions of the club, including visual and soundscape data, the author demonstrates the ‘emergent dimension of play’. It will be of interest and value to researchers of children’s play, as well as those who explore visual methods and design multimodal research outputs.”
Endorsements:
“Chris Bailey’s Screen Play Experiences in Education: Explorations in Visual Methods in Research Representation captures what photographer Hiro Wakabayashi describes as central to image work, the ability “to extract from a life what has shaped it along the way. Every experience has a hand in it.” Based on a longitudinal research study on a Minecraftclub, Bailey weaves his own story as a gamer into the book accompanied by his skilled, attenuated theorising across an array of disciplines and orientations to the visual. Observing children play and feel in virtual worlds gives readers a treasured window into how children can settle back into themselves and shape their sense of self through videogames. Children, in Bailey’s research, display visceral, felt engagements with sheep, songs, and swords in Minecraft; what is more, he manages to give researchers ways to appreciate and navigate the art of visual research along the way. Ultimately, one of the more moving and captivating aspects of this exceptional book are the illustrations throughout done by Bailey’s own hand. This is a deeply personal book that gives readers a strong sense of how virtual worlds give children room to think, feel, and extract from a life.”
Professor Jennifer Rowsell, University of Bristol, UK
This is a dazzling account of digital literacies, multimodality and videogame play in an after-school Minecraft club. The book outlines a novel methodology, ‘rhizomic ethnography’, which enabled a close tracing of the lived experience of the children who engaged in Minecraft play through the use of a range of visual, observational and interactive methods. The brilliant drawings throughout, including the use of an illustrated comic, offer the reader an outstanding example of visual methods in action. This highly innovative book makes an important contribution to the field and is essential reading for all those interested in new literacies, videogame play and visual methods.
Professor Jackie Marsh, University of Sheffield, UK
Please note: the version of the text presented here is the one submitted prior to peer review, proof reading and typesetting – but is shared (in accordance with the author’s contract) to allow those without institutional document access to access a version of the content. Many thanks to the peer reviewer(s) for their help with the versions that followed this one!
This is a preprint of the following chapter: Bailey, C, ‘Connected to the soul’: Autoethnography, neurodiversity and literacies in times of ongoing change, published in ‘Unsettling Literacies: Directions for Literacy Research in Precarious Times’ edited by Claire Lee, Chris Bailey, Cathy Burnett, Jennifer Rowsell, 2022, Springer reproduced with permission of Springer Nature. The final authenticated version is available online (as part of the full book) at: http://dx.doi.org/10.1007/978-981-16-6944-6
Abstract
The COVID-19 pandemic has seen ongoing and disruptive change on a global scale. As well as being experienced collectively, this period of uncertainty has been felt intensely and personally by individuals across the world. In this chapter, I use an autoethnographic approach to provide a personal, reflective take on recent events. Here, I emphasise how individual lives are always subject to and unsettled by change and disruption, both regardless of and inclusive of global contexts, in order to make a case for an approach to literacy research that takes direct account of the personal.
During the first period of ‘lockdown’ in the UK, I was diagnosed as autistic. Here, I reflect on this experience in the context of wider disruption, using a literacy lens to examine the texts I encountered, and created, during this period. Considering these texts―including formal diagnostic papers, a comic, mapping and song―using autoethnography, I reflect on the process and experience of being diagnosed autistic during a time of global change. I explore the multiple meanings made around these texts and the value they brought to my own ‘precarious’ experience of the world.
This chapter both exemplifies and argues for the use of autoethnography, and other storying methods, as valid and necessary aspects of literacy research. I also suggest that there are benefits to encouraging stories that engage with meaning-making through the use of multiple modes. Finally, I show how literacy research could be enriched by drawing on ideas around neurodiversity (Singer, 1999), which deal with interrelated issues of power, value and the resistance of deficit or normative models of understanding difference.
Intro
In recent years the neurodiversity movement (Walker, 2014; Kapp, 2020) has worked to shift society’s understanding regarding the varied nature of human minds, advocating for the rights, respect and inclusion of those who diverge from a socially constructed ‘neurotypical’ human default. Described as ‘a key force in promoting social change for autistic people’ (Kapp, 2020, p.3), those advocating for a greater understanding of neurodiversity have argued for a view of autism, and other types of neurodivergence, in ‘social terms of human rights’ rather than ‘as a medical collection of deficits and symptoms to cure’ (Kapp, 2020, p. 18). Neurodivergent individuals – those identifying as autistic and / or with terms such as dyslexic, ADHD, Tourette Syndrome, learning disabled etc – are positioned as experiencing ways of thinking, feeling, doing and being that, in contrast with deficit, medically mediated models of understanding human worth, add value to society in ways that move beyond neurotypical conceptions of the world. Nevertheless, neurodivergent people are still subject to social power inequalities (Tisoncik, 2020); what Deleuze and Guattari (1987) might call ‘minoritarian’ oppression in a homogenous ‘majoritarian’ system.
Ideas of power, dominance and worth that are fundamental aspects of the discourse around neurodiversity have much in common with questions raised by work around New Literacy Studies (NLS) (Street, 2012). In spite of these synergies, there has been very little connection made between work around neurodiversity and NLS. With this in mind, in this chapter I draw on my own personal experiences of being recently diagnosed autistic, through the use of autoethnography, in order to explore how these perspectives approach co-existing concerns. This provides a starting point for thinking about how work around literacies could benefit from a greater understanding of concepts associated with neurodiversity. This chapter speaks to this book’s concern around precarity both in the context of the precarity that arises at a time of global pandemic, but also at a time in history where, politically and culturally, it feels important to push back against popularist, dominant discourses around identity and neoliberally framed conceptions of value.
During the first UK Lockdown that was called at the outset of the Covid- 19 pandemic, I was ‘formally’ diagnosed as autistic by the local authority’s Adult Autism and Neurodevelopmental Service. Here I reflect on this experience, exploring how I made sense of this identity in relation to the texts I encountered, and created, during this period. I discuss these texts and their impact using three non-narrative, reflective autoethnographic episodes. In turn, this particular piece combines the written word with other modes and genres – including comics, photography, mapping and lyrics – in order to reflect on the process and experience of receiving a diagnosis of autism – and living as an autistic person – during a time of global change. I explore the multiple meanings made around these texts, and the value they brought to my individual experience of the world. Finally, I consider the value of bringing together work around literacies with perspectives from the neurodiversity paradigm and advocate for the necessity of further work that unites these perspectives.
Autism and neurodiversity
There are several common characteristics shared by those who identify as autistic. Williams (2020) suggests that ‘at the heart of the autistic experience is the sense of being ‘other’ (p. 39). This feeling of ‘otherness’ often results from the social differences that arise due to being autistic, often due to social communication differences. As such, challenge around verbal and / or non-verbal communication is a feature of autism diagnosis (American Psychiatric Association, 2013:50). Sinclair (1993) writes that “autism is a way of being. It is pervasive; it colours every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence’ (n.p.). Sinclair’s comments link most closely to the aspect of the autistic experience that relates to sensory processing. Sensory sensitivity is also a key aspect of autism (Belek, 2019:30), with autistic individuals varying in the extent to which they are hyper- or hypo- sensitive to different sensory stimuli. Autistic people also generally have a strong reliance on routine and an associated difficulty managing uncertainty (American Psychiatric Association, 2013: 50). I understand autism as an ‘assemblage’ (Deleuze and Guattari, 1987) consisting inevitably of the more pathologised medical definitions, but also being constructed from more generous socio-cultural accounts of autistic experience. Referring to autism as an ‘assemblage’ helps to resituate the language around autism in a space beyond the medical model, expanding our understanding of autism as ‘both a construct and objective part of the world’ (Chapman, 2020, p. 42), whilst also acknowledging the complexity of autism as an identity, rather than a deficit or a disorder (Fletcher-Watson and Happe, 2019). This is not to deny the very real challenges faced by autistic people, but it does help to shift an understanding of those challenges as arising from external, societal barriers rather than internal failure.
The term ‘neurodiversity’ was first coined by Singer (1999) to describe the naturally occurring variation of human minds, particularly in relation to autism. The discourse around neurodiversity has, in recent years, been extended to describe as ‘neurodivergent’ those who identify in ways that do not adhere to the neurotypical default and, as mentioned earlier, being autistic is not the only way of being considered neurodivergent. In addition to this, autism is a ‘heterogenous’ (Fletcher-Watson and Happe, 2019, p.159) experience, just as being ‘neurotypical’ is a heterogenous experience. Nevertheless, it tends to be the more medically mediated conceptions of autism, and other neurodivergent ways of being, that permeate the popular consciousness, often via simplified portrayals in media and popular culture. This is in spite of the fact that, even in medical diagnostic criteria, autism is said to be a ‘spectrum’ with a wide range of variation (American Psychiatric Association, 2013). Even this idea of a ‘spectrum’, however, is widely interpreted as being a linear diagnosis that somehow reflects the ‘functioning level’ of the autistic individual, rather than the idea of ‘constellation’ (Fletcher-Watson and Happe, 2019, p.40) of different profiles which perhaps would represent this diversity more accurately.
Autoethnography as ‘autistext’
The purpose of autoethnographic writing is to ‘describe and systematically analyse personal experience in order to understand cultural experience’ (Ellis, Adams and Bochner, 2011: 273). Autoethnography has been described as an emancipatory method that resists objectification (Richards, 2008), providing a ‘socially-just and socially-conscious’ (Ellis, Adams and Bochner, 2011: 273) means of exploring issues, particularly those around disability and difference. Autoethnography is an approach to research that allows for individual voices to be heard. Whilst autoethnography has been critiqued for being both biased and self-absorbed (Ellis, Adams and Bochner, 2011), these arguments tend to come via misunderstandings of the purpose of qualitative research. As such, Ellis, Adams and Bochner (2011) suggest that autoethnography in fact ‘attempts to disrupt the binary of science and art’ (p. 283). In writing for this chapter, I have considered ‘relational ethics’ (Turner, 2013) by obscuring the details relating to others who may appear in my writing. I have also carefully considered the impact on myself of the aspects of my own experience I am choosing to share. I have chosen to write about my experiences, not because I am eager to draw attention to myself, but because, throughout this process of self-realisation and diagnosis, I have found immense comfort in the autoethnographic and narrative work of other neurodivergent writers, such as Yergeau (2018), Ratcliffe (2020), and May (2018). Yergeau (2018) suggests that autistic stories, or ‘autistexts’, exist to ‘resist the cultural inscriptions that autism as a diagnosis suggests’ (p. 24), helping to complicate understandings of neurodivergence.
Neurodivergence is still very much misunderstood, in significant part due to the dominance of related research located within scientific paradigms. In the work of Baron-Cohen (2010) – awarded a knighthood in 2021 for ‘services to people with autism’ – autistic people across the gender spectrum have been depicted as having an ‘extreme male brain’ (p.167) and a lack of empathy or theory of mind (Baron-Cohen, 2000). Elsewhere, a recent study sought to understand levels of social distress in autistic children by causing social distress in autistic toddlers and charting their ‘distress intensity’ (Macari et al., 2020). To counter the damage done by what Yergeau (2010) refers to as ‘the typical autism essay’, research that gives voice to neurodivergent people provides a counter narrative and I am hopeful that my own reflective accounts can help, in a small way, to chip away at these restrictive understandings. My own experience of ‘neurodivergence’ is a lived experience of being autistic and, as such, this chapter largely focuses on this aspect. Although my diagnosis is only recent, I have lived experience of being undiagnosed autistic for more than 40 years. I suspected that I may be autistic for many years but was not diagnosed in childhood as a result of growing up in the 1980s, when understanding of Autism was even more limited than it is now (Siverman, 2015).
My presentation of autism is not one that is considered ‘typical’, largely because I learnt to conceal the most stereotypical ‘autistic’ behaviours, in response to negative social feedback. This relentless process, conventionally called ‘masking’ or ‘camouflaging’ (Livingstone et. al (2020), and traditionally associated with the female autistic experience, carries with it a hefty emotional burden for the individual. Contemporary diagnostic criteria (APA, 2013) now accepts that ‘many adults with autism spectrum disorder without intellectual or language disabilities learn to suppress repetitive behaviour in public’ (p. 54), hence a diagnosis of autism is no longer restricted by the perceived ‘negative’ impact an autistic individual has on other people. Nevertheless, deficit and potentially harmful perceptions of autism persist.
Given the varied nature of the autistic experience, my own ‘autistext’ here does not claim to directly represent anyone other than myself in terms of how being neurodivergent influences my life. Nevertheless, I hope that there is enough commonality here to make it at least indicative of one dimension of neurodivergence. Elsewhere I have written about my experience of being autistic during the global pandemic and resulting lockdown (Bailey and Swain, 2020), in relation to the impact of changing working practices. Here, however, I am focussing more directly on my own experience of my autism diagnosis, with specific reference to texts I engaged with during this time.
NLS and Texts
Taking a New Literacy Studies (NLS) approach here allows me to mobilise broad and inclusive understandings of literacy and text. Whilst traditional, ‘autonomous’ conceptualisations of literacy position it as a fixed set of skills, the ‘ideological’ view of literacy helps us to understand literacies as an evolving set of social practices, culturally and socially located in particular contexts, manifesting in the relationships between people (Street, 2012). Furthermore, literacies are not neutral, but are subject to power relations, with some literacies being more ‘visual and influential’ (Barton, Hamilton and Ivanic, 2000, p. 12) than others. Literacies are also connected closely with the shaping of identity (Wohlwend, 2009) with the idea of ‘identity text’ (p. 57) helping to demonstrate how identities are shaped by the consumption and production of texts and textual artefacts. An expansive conceptualisation of text helps us to understand texts as written, spoken but also as ‘multimodal artefacts’ (Pahl, 2007, p. 87). So texts can include things traditionally understood as text, such as letters, books and academic writing, but also artefacts that encompasses other modalities, such as song and image
What follows are three short autoethnographic reflections, coupling descriptive reflection with theoretical analysis. Each centre around a text or series of ‘identity texts’ (Wohlwend, 2010) that helped to shape and make sense of my own identity in light of an autism diagnosis received during a period of global disruption. The incorporation of images in this text help to exemplify from my own neurodivergent sense making practices.
A letter: language, identity and power
I receive a letter from the local Adult Autism & Neurodevelopmental Service. It states: ‘To Whom it may concern. Christopher attended this service for assessment… The assessment concluded that they do a [sic] have an Autism Spectrum Condition’. To read this is a relief. The long diagnostic process was not so much a means to find out but to validate what I already knew. I had been working on the assumption that I was autistic for some time, so an alternative conclusion would have potentially led to feelings of uncertainty, self-doubt, shame even. The letter continues ‘[…] it is important to note that Autism Spectrum Disorder is a recognised disability under the Equity Act 2010 and as such ‘reasonable adjustments’ should be made in any relevant setting’. I had already received this diagnosis verbally a few days before, via video call with the psychologist. Nevertheless, there’s something reassuringly official about these words appearing as part of a typed text, on the slightly yellow stationary that I had come to associate with the correspondence around this process.
This letter, it seems, is not written directly to me but for me, to use when I require accommodations at work. Unfortunately, any accommodations I had already negotiated with my line manager prior to formal diagnosis had been overtaken by the disruption caused by lockdown. Regardless, there’s a lot contained in these short sentences and this letter marks the end of a process of diagnosis that began with a referral from my GP approximately 14 months prior. Although the typing error (the extra ‘a’) is a little jarring, meaning that arguably the most important sentence in this letter doesn’t quite make sense, there is other detail here that is more significant. This text primarily has meaning for me in terms of my own identity – it relates to how I see and understand myself. In two short sentences, this text makes reference to my diagnosis in multiple ways, referring to Autism Spectrum Disorder (ASD) and Autism Spectrum Condition (ASC). ASD is the terminology of choice drawn from the medical literature. The DSM-5 and the ICD-10, on which diagnosis of autism is based in the UK, both frame autism as a ‘disorder’ – a word which evokes deficit, a broken-ness.. Deficit models prevail in all aspects of life. Since its inception, New Literacy Studies (NLS) has sought to challenge the ‘deficit’ model that stems from ‘autonomous’ conceptions of literacy (Street, 2012), where one dominant set of literacy practices are positioned as valuable, whilst the socio-cultural, contextual and profoundly meaningful literacies of everyday life are side-lined. The ‘ideological’ (Street, 2012) model of literacy has sought to complicate binary notions of ‘literate / illiterate’ by questioning dominant discourses around literacy. Similarly, the neurodiversity movement has sought to challenge dominant, medicalised understandings that position autism (and other minority neurotypes) as somehow lacking against a default or standard way of understanding what it means to be human. The reframing seen in this letter, replacing ‘disorder’ with ‘condition’, is presumably an attempt to acknowledge the potential stigmatising effect of using particular language. However, whilst ‘condition’ is often used synonymously with ‘state of being’, there is also still something pathologised about the term.
There’s an argument here for using the term ‘identification’ rather than ‘assessment’ or ‘diagnosis’, as a means of avoiding the stigmatising and medicalised associations that diagnosis entails. Self-identification is considered a valid option by many within the neurodivergent community, due to the multiple barriers to diagnosis faced by many people. A referral for autism assessmentin the UK requires agreement by a General Practitioner (GP). This poses a barrier for many, given the widespread lack of understanding about the different presentations of autism, as a direct result of narrow representations that arise from a system that itself perpetuates regressive understandings. This has historically resulted in many being denied even the chance of assessment by uninformed gatekeepers, resulting in underrepresentation of diagnosis for anyone who does not present as male (Estrin et al, 2020) and racial minorities (Travers and Krezmien, 2018; Zuckerman et. al, 2014; Ribeiro et al (2017)). This, in turn, leads to an underrepresentation of such voices in the academic literature around autism (Onaiwu, 2020) and the system perpetuates itself and its ‘grave inequalities’ (Onaiwu, 2020).
My privilege as an educated, middle-class white man, with free access, via my workplace, to a knowledgeable counsellor who could support and advocate for me in the first instance, worked in my favour and, even though my autistic presentation is far from ‘textbook’, these factors likely legitimised my request for diagnosis. I’m conscious of the irony here, of being a white man writing about underrepresentation. However, my prime driver for writing about my experience at all is to use my position of relative privilege to highlight how my experience differs from that of others, to generally contribute to reduce stigma around autism and to strengthen cross-disciplinary bonds with neurodiversity in order to ensure that such voices are represented in future. Those, like me, fortunate enough to gain a GP referral then face a lengthy wait, as (in the UK) NHS services are largely underfunded. In other countries, the only route to diagnosis is costly. Added to this, the process itself requires a significant amount of emotional labour, complicated by ‘bureaucratic literacies’ (Jones, 2014); a steady flow of correspondence that requires reading and writing of various letters and the completion of diagnostic forms and questionnaires. I am fortunate to have had the emotional support of my family, which is by no means true of every autistic person. There is also the resulting stigma when diagnosis is achieved. Again, I have privilege in that I work in a university department where a diagnosis (in and of itself) should not be a stigma. This is, sadly, not the case in many areas of working life (Hayward et al, 2018), in spite of assertions that autism is ‘a recognised disability under the Equity Act 2010’. For many people, the suggested ‘reasonable adjustments will remain unrequested, or ungranted.
Regardless of the specific words used, the structure of the sentences used here would still position and contextualise autism in a particular way. I am told that I ‘have an Autism Spectrum Condition’. This phrasing, employing the possessive word ‘have’, uses what is often referred to as ‘person-first language’. Advocates of person-first language argue that it is important to use ‘nondisabling language’ that places ‘emphasis on the person first rather than the disability’ (Jensen et al.,2013, p.46). From this perspective, I am constructed as a ‘person with autism’ rather than, as would be the case in identity-first phrasing, ‘an autistic person’. A person-first conceptualisation suggests autism is a thing that you have, but it is not a thing that you are. This is, however, in direct contrast to the reflections of autistic individuals, such as Sinclair (1993), who disrupt the more pathological assertions about autism, suggesting that being autistic is not something that can be separated from the self. Whilst well-meaning, person-first language tends to originate not from the disabled communities themselves and the person-first language use in my diagnosis letter is now widely critiqued within the neurodiversity and wider disability studies communities.
Rather than reducing stigma, person-first language has the potential to increase it by embedding deficit understandings of disability. As Gernsbacher (2017) suggests, ‘desirable attributes are normally expressed through pronouns preceding nouns’ (Vivanti, 2020: 691), and therefore PFL implicitly positions disability as undesirable. For these reasons, Botha et. al (2020) argue that the framing of autism through language ‘has material consequences for the autistic community, especially those who are minimally verbal’. Bottema-Beutel et al (2020) suggest that the framing of autism though language in this way can have the effect of reinforcing ‘ableist ideologies’, ableism here being defined as ‘beliefs and practices that discriminate against people with disabilities. The neurodiversity perspective, however, ‘sees autism as an expression of cultural diversity, rather than pathology’ (Vivanti, 2020 p.691) and, therefore, the use of identity first language is a means of asserting autism as an identity without presuming that this de-personifies the individual.
As I identified earlier, this letter can be thought of an identity text, and one which is invested with the weight of official discourse. This text has potential power, in its formality, to reinforce problematic medicalised conceptions of neurodiversity. As Yergeau (2010) identifies, ‘outside forces institute their own values and ideals’ suggesting that ‘there is a problem with power dynamics’ in autism discussion. In recent years, however, the autistic community has itself sought to reframe the discussions about neurodiversity using digital texts via blogs and social media. So when I read this letter and see the medicalised framing I do this in the context of also having explored autism more widely, and not only via academic literature. On social media, the #ActuallyAutistic hashtag provides a way of autistic voices being heard, where the autistic community share their experiences, thus adding detail and nuance that complicates the narrative around autism. As such, this ‘formal’ diagnostic text does not exist in isolation and the extended network of texts produced by autistic individuals have the power to recontextualise and then shift discourses and personal understandings.
These words repeat in my head as I run. These are not my words but the words of a song, ‘Schiphol Test’ by Underworld, playing through noise-cancelling earphones pushed deep into my auditory canals to block external noise. Many autistic people process sound in ways that differ from the neurotypical population (Davies, 2019). For me this results in a hyper-sensitivity to multiple environmental sounds (Fletcher-Watson and Happe, 2019) which compete for my attention and can lead to overwhelm. Headphones help me escape from such complex soundscapes, into a space where sounds weave together in more pleasing ways. Here, electronic beats and a repeating bass pattern accompany a familiar voice, all of which merge with the motion of my body through space as my Nike trainers make their own rhythm on the asphalt. My hands, fingers splayed wide, make repetitive, jagged patterns in the air ahead of me in time with the beat. Driving synth base, repetition, movement, flow…
‘Got to get away…’
I re-discovered running in my mid-twenties, and have been running regularly ever since. I was put off most kinds of physical exercise when I was younger due shame involved in always coming last, compounded by the PE teacher who was overheard mocking my unusual running form. However, running as an adult is a different experience. Since the onset of the pandemic and the beginning of lockdown I have been running, compulsively, every day, because I need it. Amid newly reconfigured working and living patterns necessitated by new directives to prevent the spread of the virus, I have found multiple readjustments really challenging. Like many autistic people, I find change difficult and rely on routine and a level of certainty to keep myself calm. For most people, however, change and uncertainty has characterised lockdown. Disruption of routine. Distractions. All of these lead to overwhelm, which is characteristic of the autistic experience of the world… particularly when the world feels as unstable as it is at this point.
‘Connected to the soul…’
But when I leave the house, running and listening to music, I find some kind of release. The words of this song may not be my words, but they become my words as movement helps me inhabit the space made by the song. The song is a text, but one that is embodied and that I can move inside. As Frith (1996) suggests, music has the ability to define ‘a space without boundaries’ (p. 125). Running – movement – does not generally achieve this on its own: I need the music too. Not just this song, there are many others, but this is one that has caught my attention during this time and one that I’m compelled to have on repeat. There is a kind of certainty in repetition. Some might call this escapism, but it doesn’t feel like escape – it feels like connection,as if the song isspeaking to and through me. In particular, there’s something about the word ‘soul’ here that chimes with my thinking round my identity, and the fact that somehow my very essence has been disrupted and, concurrently, settled, by my diagnosis.
Particularly at times of change or disruption, music has a powerful way of resonating when all else has failed. A connection is formed between the world, the song, my body and my senses. I can usually rely on this process – combining movement and song – to help me escape a full meltdown. In particular there’s a route I’ve discovered during lockdown where, after a short section of residential roadway, a right turn takes me to the top of a hill with a view that stretches out for miles. Reading the horizon, on a clear day, I can make out the silhouettes of two coal fired power stations forty miles away. Soon after this expansive view of the world I’m led by the curve of the road, down a tree-lined hill into green fields inhabited by horses and other wildlife. I’m carried by this descent and the music and my surroundings, experiencing something close to joy, the opposite of the ‘emotion dysregulation’ (Swain et. al, 2015) I was experiencing just minutes before. Running feels like an act of creation, like the energies flowing through my body must be leaving some kind of trace. In my case a digital record is being generated, by the GPS tracking on my watch. A map is produced, a line drawn that allows me to revisit this and every other run, via the Strava app. As well as the individual map, it generates a ‘heat map’ of territory covered over a set period of time. Figure 1 depicts one such map, showing my territory covered during 2020. Roads and paths that are most frequently charted are coloured ‘hot’ – red and thick, whilst the less regularly taken routes are marked ‘colder’ blue. The aforementioned hill descent is, unsurprisingly, the thickest red line on the map.
Figure 1: Extract from ‘Strava Heat Map’
This digital map recalls a process of mapping developed by Deligny (2015) who mapped the movement (or ‘wander lines’ (p. 44)) of autistic children, in the process charting a ‘mode of being’ (Deligny, 2015, p. 33) in the form of a network (‘the arachnean’ (p.33)). Deligny’s web-like maps were intended ‘to shape a gaze in order to change habits’ (Ogilvie in Deligny, 2015, p. 13), not to impose change on the observed individuals, but to shift the gaze of the observer. The maps encourage the observer to identify value in places (or ‘modes’) where it may otherwise not have been evident. My own lines of drift, made visible in Figure 1, are driven by affective experience; not recorded to achieve a particular running achievement but a map of territory covered in the pursuit of positive affective experience.
The recent turn towards the examination of ‘affect’ in New Literacy Studies (Leander and Ehret, 2019) suggests that texts can be understood in relation to a body situated within ‘assemblages’ (Deleuze and Guattari, 1987) of material, immaterial, spatial, semiotic resources, and environmental aspects. ‘Affect’ names the ‘prepersonal intensity’ (Shouse, 2005) that arises through the shifting from one bodily state to another – experiences that defy labels like ‘feeling’ and ‘emotion’ but nevertheless take a powerful hold of our bodies and minds. The assemblage involving running and song recounted above features what we might call an affective ‘intensity’ (Deleuze and Guattari (1987). In autism, the sensory self-regulation achieved through movement, and other sensory means, is often known as ‘stimming’ (Yergeau, 2018: 98). These self-regulatory autistic behaviours are, to those following the medical model to implement behaviourist interventions such as Applied Behavioural Analysis (ABA), undesirable behaviours to eradicate, to mask, to suppress. There is an abundance of studies looking at tracking and reducing or eliminating this ‘stereotopic behaviour’ (e.g. Amiri et. al, 2017: Tse et. al, 2018; Zhou et al, 2020). These seek removal of the autistic need for sensory stimulation by denying individual agency over the body. This is the kind of perspective that led to disparaging comments on my unusual movement by the school PE teacher and also saw me regularly getting reprimanded for my facial tics that were interpreted as ‘pulling faces’. Recently viewing home videos from my childhood – visual texts that help me review and re-evaluate my own history in light of my recent diagnosis – it is clear that these behaviours were neither conscious nor confrontational. As mentioned earlier, the DSM-5 Criteria (APA, 2013) allows that ‘many adults with autism spectrum disorder… learn to suppress repetitive behaviour in public’ (p. 54) Even if this does not come directly as a result of ABA interventions, these movements are often masked due to the kind of social / cultural engineering that comes from wanting to appear ‘normal’.
Again, the neurodiversity perspective reframes these movements as positive, necessary and even empowering acts. Bakan (2014) explicitly explores the intersection between music and stimming, reframing self-stimulatory behaviouras being ‘productive, communicative, pleasurable and even socially valuable’ (Bakan, 2014, p.133) noting a ‘fluid progression between different modes of productive engagement.’ This productive engagement with multimodal texts, via music, has much in common with the affective perspective on literacies. Furthermore, just as the ‘ideological’ notion of literacy seeks to challenge the ‘autonomous’ idea of literacy as a pre-established set of skills – forcing the individual to comply with state sanctioned and narrow conceptions of literacy via government sanctioned reading schemes and examination – so the neurodiversity perspective challenges the pathologised notion that there is a standard way of being, of moving, that the individual must adhere to. There is a concept of ‘autistic joy’ which has yet to permeate academic accounts of autistic experience but if often exemplified on social media. Whilst my experience of this active ‘reading’ of the song is about sensory regulation, it is also about the ‘autistic joy’ that comes from sensory experience of the world. This is an account of affective, sensory engagement that leads to positive encounters. This assemblage of sound and movement and space creates a generative act.
3. Special Interests: photography, aphantasia and ‘seeing’ the world
Another letter arrives later in June, on familiar yellowed stationery. This is a detailed report, providing an extensive written summary of the discussions that led to my diagnosis. This is ordered under headings. Section 1 refers to our discussions around my ‘Development and Social History’ looking in turn at ‘Early childhood’ and ‘Education’. This was the section that my parents also contributed to, reflecting on everything from my favourite toys to my early relationship with food and managing change. Here I also talked about very early challenges with making friends and meaningful connections with peers whilst at school. Section 2 features comments under the headings ‘Social Communication and Interaction’, ‘Sensory Experiences’ and ‘Restrictive repetitive patterns of behaviour interest or activities. The nature of these comments means they mainly deal with negative or challenging aspects of being autistic, and this last section includes some recounting of our discussions around what are often called autistic ‘special interests’ (Jordan & Caldwell-Harris, 2012) that often result in hyper-focus on particular topics of intense interest. Alongside my interest in music, the form reports that I have ‘a tendency to spend long hours taking, developing, looking at and reading about photographs’. I love photography and, particularly during lockdown, I have found comfort in taking and developing my own film photographs. Even this, however, is framed as a negative, as a ‘restrictive’ interest.
Such absorbing ‘interests’ have always been a means of pleasure and also provided me with a way of making sense of the world. I have been thinking, for instance, about the concept of masking, of hiding autistic traits, in order to present as neurotypical. This thinking has involved the use of photography, as a means of exploring my physical stimming behaviours (Figure 2). This visual text is one attempt to examine my own ‘autistic’ movement. I shot a sequence of stills capturing the motion of my own hands on black and white 35mm film, developed these at home, scanned the negatives and presented them in sequence. The process of creating this visual text, as well as the finished text itself, assisted me in achieving some abstract distance from myself, creating a sense of space from the subject of my thinking. It provides me with a means of thinking about the sensory self-regulation that I manage to achieve through repetitive motion.
Figure 2: Moving Hands – black and white negatives
The fact that this text is visual, rather than written, is significant. Autistic people report differences in how they process and engage with the world visually. Grandin (2006), for example, reports a vivid experience of ‘thinking in pictures. Others, like me, are at a different point in what we might term the visualisation spectrum – with a complete inability to think using internally generated pictures. Aphantasia (Zeman et al., 2015) is an inability to visualise using the ‘mind’s eye’, resulting in an inability to ‘see’ in visual imagery. I do not have the ability to visualise or remember objects, people or places by forming a mental picture of them. This causes all types of problems with recognising people. It is not possible to be formally diagnosed with aphantasia but there are tools online to aid self-identification. As such, there is little known about its implications, but also less stigma involved than with other neurodivergent ‘conditions’. Until very recently I had worked on the assumption that ‘visualising’ was just a metaphor for conceptualising, rather than an actual act that people could perform. Again, working through this idea I created another comic, in order to describe and communicate, in a concise sense, what this means for me (figure 3).
Figure 3: Aphantasia comic
Whilst autistic people can face challenges with language generally, and non-literal language more specifically (Fletcher-Watson and Happe, 2019), there is emerging work to suggest that multimodal methods of communicating offer valuable ways of thinking and expressing figuratively. For instance, Hartman and Paradis (2020) specifically examine an autistic individual’s use of embodied gestures and comics to make and express figurative meaning. My own use of photography and drawing could be explained as a method of externalising the process of visualisation, as a kind of extended cognition (Clark & Chalmers, 1998). This has supported me in developing my understanding of my own neurodivergent identity in a way that does not assume that language comes first. Although I do not think in pictures, I find it really useful to think with pictures. We still know very little about how neurodivergent ways of being impact on thinking and learning. What is clear is that pedagogical approaches that make assumptions about how people think, learn and process their ideas that assume a neurotypical default are not sufficient for everyone.
Conclusion
This chapter has provided an ‘opening’ by calling for an expansion of the scope of literacies research to take greater account of work around neurodiversity. Bringing ideas around neurodiversity to a consideration of people’s experience of text helps to further validate the move towards examining affect as part of NLS. Through telling a fraction of my own personal story, in relation to a range of textual assemblages, I have addressed issues around neurodivergence, the personal value of non-written communication, differences in representation and cognition, affective experience and self-expression and identity. I have drawn a number of parallels between NLS and neurodiversity, demonstrating how these ideas can be bought together to address and enhance coexisting concerns. The texts threaded throughout my account have acted as a means to mediate my own identity, as well as engaging with dimensions of experience around text that include the sensory, the spatial, movement, experience, meaning making, power, learning and thought. Evidently, a single autoethnography by a white, male neurodivergent academic is not enough in itself: we need to take account of the culturally and socially diverse nature of the neurodivergent population, but I hope that my ‘opening’ is a hint at the possibility for future work.
I suggest this should occur both via pursuit of adaptive, inclusive, narrative methodological approaches, as well as through a shift in the focus of research itself. Murray (2020) suggests that ‘people have different experiences of the world, and unless we listen to them when they tell us what makes their lives difficult and what helps, we often make things worse’ (p. 105). Literacies research has a history of illuminating the lives of marginalised people and helping to shift traditional perspectives. As such, I am advocating for literacies research that makes an increasing move to acknowledge the neurodiversity of people. The lives of neurodivergent people, both in childhood and beyond, are still subject to reductive, negative understandings via dominant medicalised discourses. A greater focus on the lived experience of neurodivergent people, in relation to texts and the related literacy practices and events, would enrich society’s understanding both of the value of literacies and the nature of neurodivergence. We know that texts have the power to shape lives, both positively and negatively. By focussing on the texts around neurodivergent lived experience, there is an opportunity for literacy studies to further broaden the scope of its impact.
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Grandin, T. (2006). Thinking in pictures: And other reports from my life with autism. Vintage.
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If you require sight of the final version of this chapter and are not affiliated with an institution that provides you access to this then please drop me a line. 🙂
This Lancaster Literacy Research Centre event will be a talk from Chris Bailey titled Meaning Making, Multimodality and Minecraft: Developing research around screen based play
Abstract:
‘Meaning Making, Multimodality and Minecraft: Developing research around screen-based play’
In this presentation, Chris draws on the work outlined in his forthcoming Palgrave Macmillan book Researching Virtual Play Experiences: Visual Methods in Education Research. Here, he illuminates the lived experience of a group of primary school children engaged in virtual world play during a year-long after-school club. Shaped by post-structuralist theory and New Literacy Studies, this work outlines a playful, participatory and emergent methodological approach, referred to as ‘rhizomic ethnography’. Chris’ work uses words and images – including comic strips – to demonstrate how children’s creation of a digital community through Minecraft was shaped by the both the game and their wider social and cultural experiences. Through the exploration of various dimensions of the club, including visual and soundscape data, Chris seeks to demonstrate what he calls the ‘emergent dimension of play’. This presentation will be of interest and value to researchers of children’s play, as well as those who explore visual methods and design multimodal research outputs.
Event schedule:
11:00am – Welcomes & introductions (please enter the meeting with your ‘real’ name as your display name, and your camera switched on, to allow us to all put faces to each others’ names)
11:05 – Presentation from Speaker Name(s) (please turn your camera off and mute your microphone during the presentation)
11:40 – Discussion (please use the raise hand feature on Teams to indicate you would like to have a turn speaking and once asked to speak by an event facilitator, please un-mute your microphone and turn your camera on)
‘Error gives expression to the out of bounds of systematic control. When error communicates, it does so as noise: abject information and aberrant signal within an otherwise orderly system of communication. While often cast as a passive, yet pernicious, deviation from intended results, error can also signal a potential for a strategy of misdirection, one that invokes a logic of control to create and opening for variance, play and unintended outcomes. Error, as errant heading, suggests ways in which failure, glitch, and miscommunication provide creative openings and lines of flight that allow for reconceptualisation of what can (or cannot) be realised within existing social and cultural practices’(Nunes, 2011, p.3)
Nunes, M (2011), ‘Error: Glitch, Noise and Jam in New Media Cultures’ (Continuum, New York)
With my manuscript submission deadline fast approaching, I have managed to find some time to continue working on my monograph for Palgrave Macmillan, mainly in the rare moments when both children are asleep at the same time.
One of my priorities has been to rework some of the visual content from the thesis. In some cases this just involves tweaking the formatting but in a few places I have reimagined and redrawn the pages from scratch.
One example is from chapter 4 where I use Deleuze and Guattari’s (1987) concept of the ‘Body without Organs’ (BwO). I was not entirely happy with the image I drew to represent this concept in the thesis, and had managed to work on something I was a lot happier with. I have also reworked this alongside the text describing my use of the concept as a tool for thinking, rather than leaving it as a stand-alone image. In this and other cases, the use of multiple stages afforded by the comic approach helps to break down – and even slow down – the narrative in order to encourage the reader to linger on a concept or idea in a way that the author does not control using a standard paragraph.
Another single page reimagining comes in relation to another of Deleuze and Guattari’s concepts: ‘the plane of consistency’. Here, the redrawing comes because I didn’t feel that the original version of this page flowed properly. So here I have simplified, removing the ‘talking head’ version of me that felt like a bit of an unnecessary distraction, going with a different perspective on the ‘row of doors’ that puts the reader head-on, rather than at an angle to the scene. You’ll notice that the central door in frame two features an small section cut from the BwO image used above. Through the book, in the comic sections, I refer to previous and forthcoming visual motifs as a way of tying things together. Of course, it also means I have less drawing to do, which helps: I still find drawing really tricky, but also rewarding when things go right. I did try a version of this with the rhizome creeping out of the door, but it looked a bit too threatening, so I kept it in its ‘potential’ state instead!
The following two pages are reimaginings of what was previously a single page from the Soundscapes chapter. Writing this for my thesis originally I remember being really stumped for ideas for this bit. However, I needed this section to be in the comic format as a bridge between the pages before and after. Therefore, I originally settled for a simple idea that I felt didn’t really justify its own existence. Coming back to this section I had some new ideas, which worked pretty quickly and spread this section across a much more appropriate double page spread. Again, the BwO / rhizome image makes another appearance in a couple of forms and I also reuse a hand picture from chapter four, whilst also introducing some additional elements. I’m much happier with how this flows now, as it has a better pace to it and I think the visuals are much more useful in making the points. (There’s still a typo in one of the images below, which I’ve now corrected elsewhere! Sharing stuff is always useful for spotting mistakes!) And although you wouldn’t know it, the spiral started life as a doodle around reading Spinoza… Everything hangs together, in the background…
Finally, another new comic comes early on in the book where I introduce the (human and non-human) participants. In the thesis I used photographs and screenshots, obviously obscuring the images of children in the way I do in the data transcripts. However, I felt that an illustrated approach would work better, but was something I ran out of time for when it came to the thesis. I find drawing people REALLY hard, so these look very little like the children they represent. Of course, this is useful for anonymisaton purposes, and I think the spirit of the drawings is much more in keeping with the feeling of the club than a series of obscured photographs.
This post only deals with some of the changes I have made visually, but I hope it goes some way to justifying (if only to myself) some of the alterations I have made in making the transition from thesis to book. Although I have been pressed for time, I have enjoyed rethinking these comic sections in a way that I don’t think I would have done if I was dealing just with written text.
I have used and developed quite a few rolls of film since ‘lockdown’ was announced towards the end of March. Using the word ‘lockdown’ feels a little disingenuous as I’ve been fortunate enough to been able to keep running regularly, with plenty of opportunities for social distancing in the fields and woodland close to our house. I take photograph all the time, most often using my iPhone camera. However, I am increasingly drawn back to using film and thought I would use a post to share some of the sets of mainly 35mm photographs I have taken over the past few weeks. I love the process involved in taking and developing film, the unpredictability, the materiality, the imperfections…
All black and white photos below were developed at home using caffenol – a mixture of coffee, soda crystals, vitamin c and water.
I recently set myself a project of focussing on photographing light and shadows. This resulted in the following two sets of photos, both taken with black and white film in a compact Canon camera. The first set were taken in and around the house over the course of one day.
The second set were taken on a run, again focussing on light and shadow…
My instant Instax camera has been good for photographing some of the blossom that appeared during spring. I like the way it renders the colours, in particular.
I made my own pinhole camera for pinhole camera day on April 26th 2020, using a box of anti-anxiety meds to construct the camera.
If you put 35mm film in a medium format camera it enables you to use the full width of the film and the final image includes the sprockets. This was the first time I had tried this and I was pleased with the results.
The next set were also taken on my Ensign Selfix 420 medium format camera, this time using medium format film. These are from my first two rolls of medium format, having only just purchased the second hand camera – an Ensign Selfix 420 dating from 1942.
Colour film shots – I’m not set-up to develop colour at home so I sent these away to be developed and scanned in the negatives myself. To be honest, some of these could do with some additional colour correction, but I quite like them as they are…
And finally, a few more selections from a couple of other black and white films, mainly taken out on runs.
‘Music has always submitted its forms and motifs to temporal transformations, augmentations or diminution, slowdowns or accelerations, which do not occur solely according to laws of organization or even of development’ Deleuze and Guattari (A Thousand Plateaus, 1987, p. 270)
I was recently invited to contribute to the Elektronisches Lernen Muzik project by James Lamb. The project explores the connection between learning and music. I produced a mixed playlist and my own liner notes.
‘Music has been a major source of comfort during this time, not to lighten my mood but to match it, to allow me to dwell in a productive, creative space that acknowledges, rather than escapes, some of the darkness of the current time.’
‘The hand must not be thought of as simply an organ but instead as a coding… a dynamic formation‘ – Deleuze and Guattari (1987: 61)
The Coronavirus outbreak has led to a social preoccupation with hands, through the promotion of habitual hand-washing as a means of preventing the spread of disease. Hands are understood as a point of transmission and there is a now a ‘proper’, government sanctioned method of washing hands, which includes singing the words to ‘Happy Birthday’ twice to ensure the correct duration of exposure to soap and water. If you prefer, of course, you can subvert this using the words to you own (in)appropriate favourite tune:
Pre Covid-19, however, I had already found myself frequently thinking about hands. I have recently been tattooed with an image of hands, depicting a gesture made by Laura Palmer in David Lynch’s Twin Peaks. This hand obsession has also converged with my dedication to the use of 35mm film. Here are some photos of my own hands, taken with film and developed at home, in coffee.
This resulting gif is, in part at least, a means of thinking about sensory self-regulation, through repetitive motion. It also goes nicely with music (although you’ll have to provide your own!). 😉
So, why hands? Well, in an academic context, hands have made their way into my thinking a number of times, as a means of making meaning. In my own work, when trying untangle my ontology via Deleuze and Guattari, I found myself (unexpectedly) drawing hands as a means of sense making, particularly in relation their ‘image of thought’ known as ‘the rhizome’. If I have shared this double page here before, that is largely because it represents what feels like a jump in my own thinking, and it is the means by which this thinking occurred that is my main focus here.
The comic depicts my handling of a project’s data. Although the data was predominantly virtual, in trying to conceptualise my processes of data analysis, I found myself physically acting out the movement of grasping at and manipulating this invisible, intangible data with my own hands, as if it data was an object or substance that could be untangled and held. This act of embodied thinking led me to develop the metaphor of the data as an organic rhizome, imagining – and, again, embodying – the image of a hand reaching into soil to pull out organic matter. Thinking with this specific metaphor, in this way, helped me to understand and explain my relationship with the data. However, when I came to convey this idea using writing it felt frustratingly distant from the original embodied performance; no matter how precisely chosen, the words remained a flat description of a lived, embodied process. Taussig (2011: 19) suggests that writing ‘obliterates reality, pushing it further and further out of reach’. He suggests that instead of using words, drawing can provide a way to ‘capture something invisible and auratic’ (Taussig, 2011: 13). With this in mind, creating an illustrated version of this embodied conceptualisation seemed more appropriate.
I was aware, however, of my own limitations as an artist. I have always reserved a jealous admiration for those able to represent their ideas visually, with what I perceived as my lack of talent meaning that I could not effectively use such visual(isation) techniques. The word ‘artist’ still feels like a term that applies to others, and I remain hesitant in claiming it as a description for myself. Regardless of such reservations, the will to achieve, growing from what felt like methodological necessity, helped me to overcome my long-standing fear of drawing and I began to put pen and pencil to paper. I also have aphantasia – an inability to visualise using my ‘mind’s eye’ (which I have written more about here with a comic here). My use of my own hands, therefore, and the resultant and emergent use of drawing of my hands, could be explained as my way of externalising the visualisation process. This could be understood as a kind of extended cognition (Clark & Chalmers, 1998) that helps me to develop my own understanding of complex theoretical concepts. The hands in the illustration above were not drawn (in either sense) from memory, but from direct observation. My hands, therefore, are tools that I use to help me imagine and think – both in themselves, as ‘dynamic formations’ (Deleuze and Guattari: 1987: 61) that allow me to shape and manipulate ideas. They are also as ‘dynamic formations’ that combine with pencil and pen, as means of producing visualisations on paper and screen, using what (Causey, 2017: 59) describes as ‘simple lines to communicate honestly’.
References:
Causey, A. (2016). Drawn to see: Drawing as an ethnographic method. University of Toronto Press.
Clark, A., & Chalmers, D. (1998). The extended mind. analysis, 58(1), 7-19.
Deleuze, G. and Guattari, F. (1987). A Thousand Plateaus. Minnesota: University of Minnesota Press.
Taussig, M. (2011). I swear I saw this: Drawings in fieldwork notebooks, namely my own. University of Chicago Press.
Other Media:
‘Transmission” by Joy Division
Intro Speech extract by Noam Chomsky from ‘Masses against the Classes’ by Manic Street Preachers
a space for things 