Alex Henry is a PhD candidate at Leeds University, working on a crip and feminist disability studies analysis of undiagnosed chronic illness in 21st Century British women’s writing. In the second part of this auto-theoretical piece (Part I here), he explores the pandemic’s impact on his work.
In another time and place it begins again. This is a story of recurrence: in February 2020, illness re-entered my life, this time once removed. My partner came home with a sore throat and swollen glands. The next day there was a cough. A long period of decline followed, punctuated by recoveries and relapses. Those initial months were a slow trajectory of debilitation, a time of growing awareness and recognition on my part that it was happening again.
This time was different, of course: I fully recovered from Covid within a few weeks; my partner did not. Slowly I assumed the care-role my mother had perhaps been preparing me for throughout my childhood illness. I rediscovered and unearthed lost knowledge about the practicalities of using a wheelchair, of how people talk (or don’t talk) to you when you have a visible mobility aid; these things I knew but perhaps didn’t know in the active present tense until I was (re)confronted with them, twenty years in the future.
The Violent Return to ‘Normal’
Like many others, my thesis is being written in the cruel jaws of a global pandemic whose capacity for debilitation and chronicity has reshaped our lives. The last two years have been a study in déjà-vu, strange familiarity and repetition. As governments and public health bodies ‘open up’ and, it seems, we must ‘learn to live with Covid’ without structures of support, in ways that disallow imagining a common future without disability eugenics and mass debilitation events, I cannot help but reflect on what was already known before the pandemic. Post-viral chronicity is not new and the ignorance and stigmatisation visited on the already-chronically-ill before 2019 has conditioned the inadequate and violent responses witnessed globally to Covid-19. The pandemic has made explicit for a wider population what was already known and apparent to the already chronically ill – that disability is not a marginal, niche or fixed concern. In pandemic times I have tried to reimagine and reinhabit a ‘real different world’ (Smith 2012; see Part I) as an adult, but, against my hopes for a future different from the past, I have found so few people willing to imagine with me. We must, it seems, be forced to return to ‘normal’.
Covid casts a shadow over my research and the conditions I am writing under but crucially adds little truly ‘novel’ to what I might, in another time, have come to write about pre-existing chronicity; ‘the novel coronavirus’ is strictly an epidemiological framing of Covid (SARS-CoV-2) as a new strain of coronavirus and simply extends existing experiences of post-viral chronicity to take in increasingly large numbers of previously healthy and able-bodied people. Claims of Covid and so-called ‘Long Covid’ (i.e. a temporal framing of symptoms which have become chronic) being ‘unprecedented’ are not only historically and medically inaccurate, they actively erase disability communities and knowledges who often literally embody the precedence which is being rhetorically denied and overlooked.
Living Pandemic Time in the Past Tense
Even now, in 2022, I write from a position of, I hope, temporary illness. I have been ill again for months now, seemingly after the seasonal flu. There is a growing tiredness teetering toward fatigue and other symptoms which long overstay their expected term. Slowly, I am confronting what I know – that regular and repeated infection risks serious relapse, that I am apparently able-bodied but remain vulnerable, at least in the sense that viral infection still costs me time beyond the ten-day illnesses visited on my friends and colleagues. Teaching undergraduates does this to me, twice a year, perhaps more.
The ‘real different world’ of my pandemic-time, where I taught online, was an exception, a time of safety, in which I did not need to fear these regular relapses. That time is over; we have chosen for it not to return. The pandemic is no longer new – it is written and talked about in the past tense now, as being over, even though that is demonstrably untrue, because dominant political and financial forces have ensured that a return to ‘normal’ is the only possible and liveable social reality available to many. I am faced now with this knowledge and a choice: between a career of risk and future (re)debilitation or a maintaining of my precarious health without the academy. This future remains uncertain. Of course, material circumstances mean I will teach again, at least in the short term. I expect to be ill again by Halloween. This is not (only) a covid concern, not (only) about feeling safe. It is about the very real safety of the workplace and the classroom for any disabled, chronically ill or otherwise vulnerable people, regardless of Covid, regardless of institutional entreaties to personal choice and responsibility. It is about how and why the academy is overwhelmingly able-bodied and seemingly ignorant of that fact.
For a brief moment, through necessity, our response to the pandemic was forced, in some ways, to be accessible. Work, suddenly, was conceivable at home, in-person attendance was not an unexamined prerequisite, and furlough legislation seemed to offer possibilities for another future of financial security in the name of public health. The tentative beginnings of that eminently possible (and partially actualised) accessible world have been dismantled since. We have chosen to learn nothing from the pandemic in terms of disability; rather the pandemic is now an able-bodied bad dream, a few months of curbed ‘freedoms’ set firmly in the past. We have agreed to re-embrace the terms of pre-existing systemic violence even more explicitly than before, to say that yes, some lives are worth more than others and some deaths are not only expected and inevitable, they are also acceptable (see Puar 2017).
Recovering, this Time (For Now)
My partner and I are lucky; it is unlikely that Covid will kill either of us in any direct causal sense. But it may cost us more than our health and disallow any future better than the present. In the twenty years that have passed since my first encounter with chronicity, I have often felt perpetually belated: late to school, late to social life, late to adulthood. I am slowly recognising that this feeling of being behind and the urge to catch up have always been the enemy. I have been living in a different kind of time altogether and as a child I already knew much of the spirit of what now forms my thesis, though my slow return to social life caused me to unlearn so much in adolescence.
More than two years into the pandemic, we have finally, inevitably, been reinfected. My throat is full of broken glass and the pain of swallowing anything at all is the kind of pain I remember from twenty years ago, a pain that is unrelenting and exhausting; the pain and fatigue feed each other and you have no choice but to ebb and flow with them. It is a raw reminder of how things were and could be again. But I do seemingly recover, this time (for now).
During my final few days of infectiousness, I notify my landlord that we have Covid. There are unmasked workers in our shared corridor – it seems only right to warn them that they are breathing the same unventilated air that I am from behind a thin and ill-fitting door. My landlord responds: “Thanks for the heads up – we have all had COVID, thankfully.”
I spend the next few days with this constantly on my mind. Beyond the standard personable indifference to infection and the confidence of health and ability, what captures me is the succinct way he has told me what he (thinks he) knows, what he doesn’t know, what he doesn’t want to know and what he has refused to know about the pandemic we are all living through (if we can). ‘Thankfully’ sticks in my head. Thankfully. My landlord is not a young man, but he still has his health, thankfully. The systemic failure of public health messaging and the widespread ideological weaponization of normative able-bodied capacities loom large, but this kind of ignorance is also entrenched in individual behaviour and experience. For my landlord, Covid is in his past and (confidently, he believes) it will not return.
Knowledge about the reality of Covid reinfection has been common for some time; it is, or should be, general knowledge. It is unlikely that he straightforwardly does not know this, and more than refusing to know, his experience of singular infection and recovery has instilled a process of unknowing to the extent that what it was once possible to know (that Covid reinfection is a distinct possibility) has been covered over and obscured by other culturally dominant ways of thinking (or not-thinking) about the pandemic: we have to carry on, the variants are mild, Covid is over. This kind of comforting ignorance, of unknowing covid and time-travelling to re-join life as it was in 2019 is everywhere and increasingly impossible to resist or discuss without being read as overly fearful, overly cautious; you are being a buzzkill, a crip killjoy in a lonely mask (Ahmed 2010; Johnson and McRuer 2016).
Twenty years on, I am again teetering on the edge of a required re-entry into the world as it is, not as it could be or as it has been in my ‘real different world’. Material circumstances require it, any idea of a future in academia seems to require it. I am still the lost boy walking the Big School’s corridors alone, searching for where I am supposed to be, long after my peers have found their way together, long after the bell has kept them on time and announced my lateness in an empty chair even the teacher has half-forgotten is mine. I remember and am thankful for those who didn’t forget me then and for those who choose not to forget all we can know now.
Ahmed, Sara. 2010. The Promise of Happiness. Durham, NC: Duke University Press.
Johnson, Merri Lisa, and McRuer, Robert. 2014. “Cripistemologies: Introduction.” Journal of Literary & Cultural Disability Studies 8, no.2: 127-47.
Puar, Jasbir K. 2017. The Right to Maim: Disability, Capacity, Debility. Durham, NC: Duke University Press.
Smith, Ali. 2012. Artful. London: Penguin Press.
About the author
Alex Henry is a PhD Candidate in the School of English at the University of Leeds. Now nearing completion, his thesis is a crip and feminist disability studies analysis of undiagnosed chronic illness in 21st Century British women’s writing. A section of his thesis work on Ali Smith’s Hotel World and undiagnosed chronicity will be published in a forthcoming Special Issue of the Journal of Literary & Cultural Disability Studies titled ‘Chronic Illness and Representation’ in 2023. He is available for contact at email@example.com or on Twitter @thelifebed.