A Glimpse into the Lived Experience of Disability

SFRA Review, vol. 52, no. 3

Medical Humanities and the Fantastic

A Glimpse into the Lived Experience of Disability

Mónika Rusvai

Medical Humanities and The Fantastic was a free one-day online symposium, held on 11 February 2022, funded by the University of Glasgow’s Centre for Medical Humanities and co-hosted by the Centre for Fantasy and the Fantastic. The event focused on neurodivergent and disabled lived experience and its representation in popular culture. Key topics included the way the fantastic represents or subverts neurodiversity and disability, the expressions of lived experiences depicted with the aid of the fantastic, the possibilities of reframing the social, political, and medical perception of neurodiversity and disability through fantastic re-contextualisation, and tracing the social impact of representing disability and neurodivergence in popular culture. The organisers Beáta Gubacsi (University of Liverpool) and Anna McFarlane (University of Leeds) greatly contributed to a smooth and enjoyable online event.

The introductory keynote was given by Ria Cheyne (Liverpool Hope University). I am calling her speech introductory, not only because it technically preceded the symposium, as participants could watch the recording online before they gathered for the Q&A session, but it was also introductory in the sense that it provided a detailed, precise, and meaningful introduction into the cultural research of neurodiversity, including future hopes and potential pitfalls of the field. Cheyne highlighted that recent years have brought a massive upsurge and interest in neurodiversity, hence it is our responsibility to use this increased interest to the benefit of all members of our (neuro)diverse society. Her lecture included very important clarifications of general terminology; for instance, the differentiation of the neurodiversity paradigm (variation of the human mind) from the neurodiversity movement (social justice movement); and it also included a short summary of basic terms (neurodivergent, neurotypical). Cheyne called attention to the fact that there is a multiplicity of ways academia and the wider public defines neurodivergence – hence researchers have the responsibility to consider the consequences to using these. She also formulated a warning about analysing speculative fiction and film: you cannot simply substitute the Other for any marginalised group, but you always need to give further thought to why you are using neurodiversity in a critical context.

Panel 1 bore the title “The Fantastic as Methodology,” and it contained three superb presentations. David Hartley demonstrated how cinematic versions of autism represent the state of estrangement. Based on the modes of engagement with estrangement, he identified two types of filmic approaches to autistic neurodivergence. In his view, autism films are those that include an autistic character, whilst autistic films are pervaded by a unique, autistic aura. His conclusion, that an ethical representation of disability may result in a re-evaluation of what it means to be human, is a clear message for us researchers, readers, and watchers of such cultural products. Emma Dee then provided the audience with a brief, but very interesting insight into hauntology. A literary author herself, Dee revealed through short excerpts of her own texts how she turned re-lived trauma into an embodied experience. Responsibility was also a key term in Dee’s presentation, highlighting that authors have responsibility in depicting all facets of human experience. Josefine Wälivaara’s presentation focused on non-normative time in speculative fiction and film. Wälivaara dived deep into the concept of normative time as a cultural construct; the white, cisgender, hetero, able-bodied and able-minded point-of-view of a much more complicated phenomenon. Speculative narratives, however, may provide the necessary estrangement from the familiarity with which we organise time.

Panel 2 consisted of two sections: “Senses and Sensing the World Differently” and “Lived Experiences.” The first section felt like an exciting journey through the senses and the ages. Sara Neef gave an interesting example of how blindness is represented in contemporary urban fantasy, then we travelled back in time to Sidney’s New Arcadia and observed the depiction of mind-blindness and how it might be compared to our 21st century perceptions of neurodiversity and neurodiverse people. The third presentation led the audience to the future: Leigha McReynolds showed how conventional categories of mind and body are disrupted in Samuel R. Delany’s classic science fiction novel, Babel-17. The second section of this panel uncovered very interesting landscapes for future disability researchers. I particularly enjoyed Jennifer Slagus’s presentation on graphic novels for children that focus on the lived experience of neurodiversity. The social impact of this kind of research is invaluable, as in the long term, it may contribute to the mental wellbeing of neurodiverse children. Brian Keeley’s very important presentation on the representation of heart transplantation in films left me slightly disturbed and with questions I have never thought of before. Clearly, more attention should be paid to the lived experience of heart transplantees and post-surgery experience in general.

Panel 3 focused on two themes: “Disability and Neurodiversity on Screen” and “Disability, Myths and Mythmaking.” Yet again, the symposium managed to cover a large area of screen representations of disability and neurodiversity ranging from a novel adaptation series (Good Omens, presented by Margaret Tedford) through a lesser-known Disney movie (Treasure Planet, presented by Jess Gibson) to the representation of augmented bodies in American and Japanese animation (Rebecca Jones). This section clearly showed that in pop culture research, more and more connections are developing between the wider audience and researchers (who, in many cases, are themselves fans). The two presenters of the “Disability, Myths and Mythmaking” section, however, presented on completely diverse, yet very up-to-date topics. Clare Moore, unlike any other presenter of the symposium, extended the disability topic to landscape, and demonstrated      how this terminology might be applied to the landscapes of J.R.R. Tolkien’s Middle-earth. This was a unique take on disability and had a heart-wrenching conclusion in the face of the ongoing climate crisis. The other presenter, Ellena Deeley, focused on diasporic experience through the representation of (formerly) conjoined twins in Nalo Hopkinson’s marvellous realist fiction. It was interesting to consider how the rare bodily experience of sharing a conjoined body with your twin might affect your mental health.

The symposium concluded in a creative panel with author Bogi Takács and editor Jo Ross-Barrett, both of whom belong to the neurodivergent community. An interesting discussion ensued, focusing on how disability-aware fiction is made and what the lived experience of a neurodivergent author and editor incorporate into their work. Ross-Barrett shared details of her experience as guest editor of the disabled and neurodivergent people’s issue of Shoreline of Infinity (November 2021). She reflected on such key concepts as the neurotypical gaze and how it affects our perception of neurodiversity on a daily basis, then she went on to list the most typical tropes regarding neurodiversity and disability and revealed in what ways they are harmful to both ‘normal’ and disabled people. I especially liked her harsh criticism of the trope that shows neurodivergence as supernatural in origin. Takács started a very interesting conversation about the role and dangers of allegory in neurodivergent fiction. By that time, the creative panel’s atmosphere turned cheery and colloquial, making room for such comments as Ross-Barrett’s ‘definition’ of allegory as “a taboo-friendly nonsense we have grown up with” – stating that allegory feeds the keeping-up of taboos. I found Takács’s reflection on this particularly thought-provoking as e said that this may be the reason why Eastern European speculative fiction (Takács emself is originally from Hungary) is still so fond of using allegory.

On the whole, I am very grateful for the University of Glasgow’s Centre for Medical Humanities and the Centre for Fantasy and the Fantastic for making this event possible. Extra thanks go for keeping the online format – otherwise many of us would not have been able to participate. As the keynote lectures are available on the YouTube channel of the Centre for Fantasy and the Fantastic, I certainly recommend them to watch and share the experience with us.

Mónika Rusvai is a PhD student at the University of Szeged, Hungary. She has been involved with the fantastic since her BA studies. During her MA she got acquainted with monster theory and wrote her thesis on the cultural significance of various European dragons. Since then, her road turned to the enchanted forests of European fantasy: she currently focuses on Robert Holdstock’s Mythago novels, and intends to cast new light on the series through a combination of critical plant studies and fantasy theory. As a fantasy author herself, she eagerly advocates literary myth-making of all cultural backgrounds.

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SFRA Review is the flagship publication of the Science Fiction Research Association since 1971.

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