‘Fever Wheels’: (Post)Pandemic Flash Fiction
in each instance something new comes into an already existing world. . . . Because he is a beginning, man can begin; to be human and to be free are one and the same.
Augustine, City of God
What do we become in story, when our lives face direct conflict? Or when they show themselves back to us in ‘criss-crossed’ definitions and timelines? When a funeral might be a way of getting somewhere; a road trip, a manner of grieving; a college education, an escape from childhood; a fantastic imagination, a formal bildungsroman training-in-life; a college boyfriend, a self-help study in personal affirmation; and a makeshift philosophy, something to court with passion? 
Medical humanities and disability studies put at the fore a similar question: how to be free to choose and direct our own agency, our own narrative in medicine? Whether it be medical access, timely health care, granted accommodations and assistive technologies, policy, legal protections, or simply a detailed diary of our journey, there are always, indeed, a handful of stark questions.
And so, writing ‘Fever Wheels’ helped me to create a character whose freedom during the COVID-19 pandemic was enviable. A life still brimming with readability and youthful choice at every turn. How to let Lila choose wisely and boldly amid life’s tumult — in the face of real threats. That is where I wanted my story to arrive, namely, freedom from danger. As such, and with the pandemic backdrop, everything in the plot’s throughline then became about the strangeness of the bodies we tote around with us in this life – like beloved wardrobe items or our favorite keepsakes and memories. And the sharp pitch of that raw fact of vulnerability (only compounded during COVID). For Lila, the objects of wheels in their built-environment might snowball the narrative arc, which I saw as honoring the act of reading. To frame Lila and her vulnerability in-tow as ongoing – depending on how we take it – is to begin seeing in her conflict our own COVID-era trials and struggles. That is, fiction’s drawing out the relation of reading and empathy, speech and ethics, our own call and interpellation.
When writing and revising the flash fiction ‘Fever Wheels’, the backstory of Lila’s parents originally came at the end of the story. As such, beginning ‘in media res’, I knew that I wanted the reader to recognize the coming-of-age protagonist as her own self-advocate, rather than a victim of her circumstances or a fallen heroine. To this end, I cut portions of the original drafts in which Lila, at 6’1″ and quite a contrast, is dancing with her mother, a wheelchair user due to progressive Multiple Sclerosis. When I saw how the environmental interaction of Lila and her mother could mobilize ‘wheels during pandemic fevers’, the extended metaphor of the short story came alive. Of course, I owe a debt to the disability and design research of Sara Hendren (Olin, Engineering) and Rachel Adams (Columbia, English) for their own life-long professional pursuits in both personal and scholarly commitments to disability studies. They are among a cohort who have undertaken disability equality initiatives which have underscored the significance of environment, culture, design and difference. The vulnerability of the dance scene, and an extended version of the cuddling at the cuddle shop, were plot-points which were ultimately replaced with college-age butterflies between the characters of Paul and Lila. Exchanging the material of ‘disability and marginality’ for a close-up of college students in a ‘heteronormative relationship’ was surprising in that it equally ‘felt open.’ At least for me, Lila immediately ‘touched a nerve.’ Same difference: the empathetic moments of intimacy didn’t need to feel gimmicky, at best, in representative visibility of disabled, or at worst, exploitative of vulnerable bodies, self-advocacy, self-worth, the relation between a fervent movement modality and embodiment. In other words, I felt that in a very limited space of writing, I had perhaps done the character justice, and shown the abilities and anxieties of bodyminds that carry their fictions with them.
I see now I was again doing ‘my go-to’ – working at the intersection of interdisciplinary bodies furthering disability justice, social difference, and educational advocacy. Was Lila indeed an adulting woman paying attention to her whole life, doing her own default go-to? In a way, she was a cipher for a ‘generalist’ excelling at the important things, in drawing her periphery’s life-material into a focused center. Remitting and negotiating her aspirations for her desired lifestyle, good outcomes and the good life she might want. Furthermore, if I was to create a fictitious person, with real desires and dreams, then at most I could have my politics factor in, let my own life be influential of the lives of the characters written — their affinities, their idioms, preferences, speech habits, relationship biases (*and not simply run with the decision that they are New Yorkers)! Despite newer disability futurity academic study in humanities and social sciences fields, I had permitted older established themes of standpoint, marginality, and representation to inevitably make their way through and into my enumerated ‘characterological’ methodology below:
- Modeling neurodivergent voices/methods in the design of academic writing on literary history, i.e., I wanted Lila to read as a smidge cognitively lost, and a bit ‘mad at herself’ for the initial action in her drama, like, say, Malvolio, Lear, Orestes and Electra. Her trauma and struggle to be that of literature’s complex middle ground, failed heroes-become-agonized.
- A means for media/visual culture to do its work: the cinematic fictional moments, or, the most imagistic of the story’s icons (the wheelchair, the Volkswagen Bug, the Manhattan skyline, subway car and taxi cab). Lila then herself becomes iconic for ‘her performance’. She performs her own self-care, and theorizes-to-actualizes her needed care and medicalized safe spaces. In a way, she parents herself through extenuating circumstance after circumstance, as opposed to taking some extraordinarily oblique course for herself (a more canonical orphan-story narrative). Lila’s newfound cuddly sub-definition of ‘direct care’ for self, reminds me how when at my most stressed caregiving moments for a former client – an elderly man with dementia, also a wheelchair-user, now walker-user (post hip surgery) – I would often take time to stare at the unused wheelchair in the corner of the living room. In effect, just letting my mind drift for a few moments on what its resting there metonymically meant. What the wheels in rest and empty chair conveyed to me in a given moment of exhaustion; I also was ‘disability-thinking’ about familial caregiving relationships quite often. Admittedly, through the lens of the relationship between Tom Cruise and Dustin Hoffman, brothers in the popular film Rainman, based on the life of Kim Peek (Raymond Babbit). And, I was quite taken with the autist adventure as fantastic ‘neurodiversity and narrative’. Their relationship struggles, but evolves to show itself vital in neither repeating oft paternalistic abuses of medical culture nor family caregiver burnout.
- Within the context of our ordinary lives, our habitual living and mainstreamed, Westernized, college-educated, neoliberal reflex for life in the 21st century, I see a privilege of narrative ethics and non-normative parameters for doing humanities. Writing from the locus of such research within the acts of fiction writing and revision. Playing with a ‘representative sampling’ of the population (college students, city-goers, controversial professors, and go-betweens of disabled and non-disabled characters from the approach of disability studies: ‘nothing about us without us’.
- Endowing Lila with the sensitivity and sensibility of feminist pragmatism, of critical reasoning in the face of danger. Pitting her against the possibility of real genomic threat and imagined environmental collapse. That is, the story’s speculative futurity (its fiction-as-case-study, narrative-as-ethics) willingly muddies the water at the intersection of the telltale perfect storm that would threaten Lila’s tomorrow.
Notably, in the scholarly work on science fiction by Shelley Streeby, Jay Clayton and Gerry Canavan, ‘Timelines’ and ‘Definitions’ are working-constructs only. They are duly subject to the ridiculous timekeeping of larger – often eerie and alien – forces at work. Take for instance the late novels of Kazuo Ishiguro and Octavia Butler. Narratively, we could say Lila isn’t exceptional, isn’t remarkable as a person, but her becoming certainly may be! Maybe each of her choices are in themselves extraordinary, individuated, her own timeline. Lila defines who she is with heavily saturated, resonant moments of becoming. As her author, I frankly find quite a mixed-bag of emotions in her choices. More than I perhaps intended. Or, perhaps I’d rather think of Lila in her temporariness, alongside the more lasting and complex emotional valence of, say, the history of medical ethics. We could think of the way in which the historical future is distilled in its proverbial 50 million metric tons of HeLa cells generated from its energetic test subject – Henrietta Lacks – and how the cells are messy business, which are now and forever enacting the eternal ‘fight for-and-against’ of the fantastical, surreal grand narratives of scientific progress. Progress (or regress) in the face of evolution, ecological demise, and the varied timetables of extinction – personal or otherwise.
- Lorrie Moore’s fiction, such as her 2014 collection Bark, wonderfully conveys this sense of freedom in the ‘accident’, and the ‘mistake’ at odds with a crisis response, and of ‘happenstance’ and its lucidly powerful, even revelatory, allegorical meaning.
- I am thinking of the work of Shoshana Felman and Dori Laub, Judith Butler and Gayatri Spivak. On the respective imbrication of witnessing the other to access our ethical obligation, see Felman’s and Laub’s Testimony: Crises of Witnessing in Literature, Psychoanalysis and History; Butler’s Excitable Speech: A Politics of the Performative and, Precarious Life: the Powers of Mourning and Violence, and Spivak’s Can the Subaltern Speak?
- Sara Hendren speaks to the remarkable evolution of her work, specifically autobiographically, of her ‘ecosystem of care with my son that’s for the long term’ (which is her phrase regarding maternal care for her son with Down’s Syndrome, Graham). She also discussed the self-advocate’s call-to-humanity, for being able to ask their community for help, self-care or disability-related design which is inclusive of the accommodations, the assistive technology and prosthetics, the built-world, the giving and the receiving of the world to itself as human encounter: ‘Oh, I’m in a body that has needs’. See: https://sarahendren.com/projects-lab/design-ethnography-plus-social-thought-gidest-at-the-new-school/. In addition, see further linked interviews on her website. See also Hendren’s book, What Can a Body Do? How We Meet the Built World, in which she discusses her students’ designs of ramps for stage in collaboration with AXIS Dance’s former dancer, Alice Shepphard. You can also hear a fascinating autobiography/public art/disability/tech intersection over the length of an hour interview at: www.goodlifeproject.com/podcast/sara-hendren-a-better-designed-world/ for audio, and https://docs.google.com/document/d/1_FJGBugJwZPtvxsH7BKyPFcmly8gcGDW/edit for transcript.
- Go see AXIS Dance, out of Oakland and Berkeley, California, when they tour in your city. From seeing company tours in Miami, New York, and locally in Oakland, my experience of the choreography is utterly the most satiating and evocative I could ask for, ever. Both mechanistic and vitalist in the best of ways! For more on the educational dance and disability advocacy, open community rehearsals, public initiatives, and touring performances, click: https://axisdance.org/. For more on disability politics, medical artifacts, and bodies/objects interacting through recent modern history (since 1870), read the recent essay by Kate Clark and David Serlin, ‘Unfixed: Materializing Disability and Queerness in Three Objects’, which ‘[uses] insights drawn from material culture and museum studies, disability studies, and queer history’.
- Here I was thinking of parenting, reading some profoundly engaging dual scholarship-memoir, disability narratives. For example, Mark Osteen, father of Cam, and Eva F. Kittay, mother to Sesha. Each author eloquently and insightfully embodies the ‘parent-scholar’ of now grown children with autism and intellectual disability, respectively. Their numerous catalogs of parenting and disability, the unlikely life course/s, medicalized experiences, personal and academic philosophy, ethics and care, are just a must-read in heartening, groundbreaking, human testimony and reflection.
- Jeffrey Eugenides in his brilliant 2011 release The Marriage Plot, has nearly perfected a novel-length version of emotionally-resonant, witty, well-done, coming-of-age aspirations. Powerfully hitting the mark on relationship dynamics in college graduates, the novel is set on and near the campus of Brown University in Providence, Rhode Island.
- See Canavan’s criticism in ‘Octavia E. Butler: Modern Masters of Science Fiction’ with his making use of the Pasadena, California treasure troves in the Huntington Library Archive’s Butler documents. Butler’s decades-long notes and marginalia used ceaselessly to work-over many of her ethical storylines and critical ethos.
- For more on this blog-post’s concerns and interests, see Narrative Medicine senior faculty, Craig Irvine and Dr. Rita Charon on ethics and care. An exemplary essay from Irvine, C., Charon, R. (2016) Deliver Us from Certainty: Training for Narrative Ethics. In Charon, R., DasGupta, S., Hermann, N., Irvine, C., Marcus, E., Rivera Colon, E., Spencer, D., Spiegel, M., The Principles and Practice of Narrative Medicine. New York, NY: Oxford University Press. The chapter, and the entire book more generally, approaches ‘the commonalities between the ethics of reading and the ethics of clinical practice, the chapter proposes the fruitfulness of putting them side by side’: https://academic.oup.com/book/38747/chapter-abstract/337344947?redirectedFrom=fulltext
- For more on this marvel, read The Immortal Life of Henrietta Lacks by Rebecca Skloot (London: Pan, 2011).