Daisy Lafarge lives in Glasgow. She is the author of a novel, Paul (2021), which won a Betty Trask Award and was a New York Times Editor’s Choice, and a poetry collection, Life Without Air (2020), which was shortlisted for the T.S. Eliot Prize. Lovebug, a short book on the poetics of infection, was published by Peninsula Press in 2023.
Amber Husain is the author of Replace Me (2021), an essay on the fear of being replaced, Meat Love (2023), an investigation into the culture of ‘ethical’ meat-eating, and Tell Me How You Eat, which is forthcoming from Hutchinson Heinemann.
From December 2023 to February 2024, Amber and Daisy discussed how to navigate the parasitism of the institution, chronic illness and the value of collective acts of refusal.
Daisy Lafarge:
Your essay ‘A Disingenuous Prescription’ is about publishing houses’ extraction of marketable illness narratives from sick writers. It’s written in the form of a personified illness narrative whose author is receiving editorial feedback: ‘I was first diagnosed as an illness narrative in August 2022 by an editor I met with privately after waiting to be seen for 15 months in a general submissions inbox’ the essay begins. The editor is tantalised by the potential of the illness narrative (‘a luridly describable wasting condition’) and says the book should be full of intrigue and suffering, but ultimately hopeful: ‘Here’s how I slapped the flesh back on my bones or made peace with the fact that I couldn’t. I reckon there is hope for you too if you buy my book.’ The author is reluctant to meet the demands of the editor and market, but is also placed in a double bind by the socioeconomic precarity of her illness. If she sold a big book about the redemptive arc of sickness, maybe she could finally afford to be unwell.
I’m only recently – belatedly – coming to carve out a relation to disability, and to conceptually navigate the difference (as my analyst phrased it) between being a disability writer and being a writer living with a disability. The kind of blockbuster illness narrative described in your essay can be great for many reasons, but it doesn’t leave much room for questioning the physical toll those formal and stylistic requirements may place on the sick writer, nor do they allow her to produce something formally shaped by her experience. A few years ago I found myself too unwell to meet a tight book deadline, and, unable to ‘push through’ in the manner I had previously been able to rely on, or to write the ‘hopeful’ narrative that was being asked of me, I felt my only choice was to pull out. The sticky regret I feel about this will be familiar to anyone with an experience of chronic illness – the remorse for things you feel you should have been able to do.
I’ve been thinking a lot about sickness as form rather than content. What would a sick form look like? What kinds of writing might emerge if your body will only support you to write for a limited time each day? I have been spending the few hours a day my spine can currently hack writing slowly translating Sibylle Lacan’s second book, Points de Suspension (Ellipsis). It’s short, like her first book (A Father: Puzzle) and similarly written in what she describes as disordered ‘bursts’ of around 100–300 words. She lived with chronic, undiagnosed pain all her life, which often prevented her from working altogether (her absent father Jacques Lacan dismissed it as ‘neurasthenia’). To me the ‘bursts’ are a sick form, not always sick in content, and certainly not a vision of sickness extracted from the author and puffed up into saleability.
Amber Husain:
It occurs to me how romantically involved we both are with extractive institutions (literary, medical, state, planetary). In Lovebug you mention an ex-partner who extorted your PhD money and then, after you broke up, tried to suck all this ‘debt’ from you for having lived in their property. You point out that they were a terrible parasite, sucking your ‘small life-raft’ so dry there was nothing left to suck, but how there was something thrilling about being destroyed in such a blatant way. I became fascinated with your thinking about parasites in that book, and how the best kinds of parasite actually nurture their hosts, keeping them in decent shape to go on leeching from them.
I really appreciate this distinction between a sick form that springs from the author’s condition and a narrative of sickness extracted from them. But I also wonder if extraction always implies a violent theft and depletion, or if drawing something out of something or someone could be creative too, even if it involves an element of this violence? Like the lesser kind of violence involved in working the trap you’re in – using work time for union organising, for instance, or using a lucrative book deal to develop transformative ideas. I suppose I’m talking about the logic of ‘steal as much as you can’, but with a specifically political purpose. I think the ‘can’ is quite important there – ‘from each according to his abilities’.
These questions relate to what I wanted to deal with in ‘A Disingenuous Prescription’. The editor character there is also made to play the role of doctor – offering diagnoses and prescriptions, treading a line between care and control. In writing the essay I was inspecting the affinities between the healthcare system and the literary economy, wherein you might replace the care/control dyad with creativity/constraint. It does seem rare that anyone’s offering to properly pay a writer to approach illness with genuine curiosity. Easier for editors to go for the redemptive, instructive, blindly hopeful narrative that will sell itself. And unless you give a writer the financial freedom to do the slow work of enquiry, it’s easier for the writer too, especially if they’re ill.
In their book Health Communism, Artie Vierkant and Beatrice Adler-Bolton talk about a process of ‘extractive abandonment’, where the state ensures that those who are deemed unproductive are still profitable. The US care system squeezes money from debility via private nursing homes and psychiatric hospitals, for instance – institutions that can be inhospitable rather than nurturing. In a situation like this, as in the publishing industry, it becomes extremely urgent to think both about what we would want from the system in an ideal world, and what we need to extract from it now to help us get there collectively. Like, when you sack off a book because the payoff isn’t worth the creative, intellectual, physical or political cost, you’re making a statement about what is important to you. So what is that? How might we work towards it, and how can we use the publishing industry in those efforts, even in its current state?
Lafarge:
I’m taken by this comparison you draw between the healthcare system and the literary economy. I wonder if my struggle to know how to navigate the literary economy is because I’m nursing a fantasy of it being like an ideal version of the former, i.e. universally accessible, and not based on profit. What you say about the care/control and creativity/constraint dyads makes me think about how disability and chronic conditions complicate what we want from these institutions. A few months ago I went to see my doctor about some new symptoms. She listened carefully, asked questions, affirmed their effect on my life and their place in the constellation of my condition. Then she said, ‘And what would you like me to do about it?’, which was followed by a silence, and then we both started laughing (me more hysterically than her). It was a strange and bitter relief, to be affirmed by the medical system through diagnosis, but for that system to admit that it’s not equipped to help people manage chronic illness or disability. I’m hesitant to say that this is liberating, because obviously we want and need more from a health service, but not being able to get the kind of support I need from a doctor (appropriate and effective treatment for my condition is not available on the NHS) does in some way free me from wanting what they have to offer.
I don’t know what the editorial equivalent of this would look like, but I think it probably has something to do with the co-existence of violence and benefit you mention vis-à-vis extraction. About becoming a better – more successful – parasite? I don’t mean that in the girlboss way. One of my obsessions in writing Lovebug was learning about how certain dynamics – parasitism, mutualism, commensalism – are not (or not always) biologically fixed, but are rather behaviours that become entrenched over time, which can and do change. So a relationship that starts out as parasitic can become more mutualistic, and vice versa, and that calling a certain dynamic parasitic might change when a previously unseen benefit of the arrangement comes into view. And also that, ecologically speaking, being parasitised usually comes part and parcel with being a parasite yourself.
It’s been a good year for collective gestures of refusal: a new open letter every few days, withdrawing labour, expressing solidarity, protesting censorship. I am energised by the vital work being done by groups like Fossil Free Books and WAWOG (Writers Against the War on Gaza). Although I don’t want to overstate the importance of these actions, it’s bizarre to me that they are seen as anything other than baseline solidarity with refusing to maintain a genocidal status quo. Maybe this is why I’ve found myself drawn to reading different accounts of Antigone these last few months, a figure who is so endlessly useful in thinking about the cost of refusal. In Antigone’s Claim, Judith Butler pushes back on Lacan’s interpretation of Antigone’s masochism, of ‘rushing by oneself to one’s own destruction’. Butler offers a counter-reading of Antigone as a radical melancholic whose actions expose the perversity of so-called normality. Antigone becomes a way to think about ‘how the condemnations under which one lives turn into repudiations that one performs’. I think this relates to what you phrased as how we can ‘use’ the publishing industry; how we might extract something from it that builds towards the world we want. And how actively using something implies the possibility of pleasure rather than just being depleted or extracted from.
I’d love to know what you’re working on now – a continuation or departure from your previous books?
Husain:
I agree with what you say about disability and chronic conditions. I think we’d stand to gain a lot from thinking harder about what things should actually be the domain of medicine and which would be better dealt with by other kinds of social infrastructure. It’s taken me seven years of chronic daily migraine to realise that the health system has almost nothing to offer for that kind of illness. The first couple of years were mostly spent begging for a referral to a neurology clinic, which in the end meant nothing but access to a slightly wider selection of pharmaceuticals, all of which were quite nasty and ineffective. With each new drug, the doctor would warn me it was unlikely to help, implying that I might as well give it a go since my life was already ruined.
But just because migraine symptoms are neurologically complex and hard to medicate, doesn’t mean the deeper condition needs to be ‘lifelong’ (my medical prognosis). If you think about nervous system disorders as more than just a load of biochemical and electrical ‘accidents’, and rather as disorders that are psychically, socially, politically and spiritually mediated, the picture becomes at once both bleaker (from a social perspective) and more hopeful. In the last year, I’ve finally started to see some changes through (among other things) psychoanalysis, psychedelics, spirituality, political purpose, a better financial situation and coming off all the drugs. Our sickness is so much deeper than medical wisdom is equipped to understand, but also so much more addressable, particularly on a social level.
Nothing could ever stop me defending and calling for a universally accessible, not-for-profit health system. But I find it frustrating sometimes that the need to defend the healthcare system makes it difficult to publicly question whether medicine should be the ultimate authority for all kinds of suffering when, in many cases, it can also be liberating to think about what other kinds of (free, accessible) social provision might support healing or better living. I’m so sorry about the onslaught of recent symptoms you describe, but I also appreciate this scene of laughter with the doctor who at least recognises the limits of their own understanding and power.
I think it was a huge vibe for you to can the book, and not really limiting if it means you’ve been able to reflect on how you want your work to enter the world. When you’re so deeply caught in the machinery and the only way to assert yourself is through total repudiation, then that is the necessary first step. To answer your question, I hope my next book will be more affirming than my previous work, much of which has been pretty critical. That said, I don’t think you can convincingly affirm all that much without first shredding some dogma, norms and ideology, so there’ll probably still be a fair bit of criticism and satire. How about your current work? Is it a departure or continuation for you?
Lafarge:
One of the hardest things I’ve found in relation to living with chronic illness – alongside the pain and isolation – is being forced to assume a particular relation to language and specificity. It’s been a process of learning how to jump through institutional linguistic hoops, realising that certain words can act as keys in diagnostic and pharmaceutical locks. I found it both exhilarating, and a kind of grief to go through. Exhilarating in the sense that finally clearly identifying and articulating symptoms led to a diagnosis which permitted access to some (however meagre) forms of maintenance and treatment. But also grief in terms of being made to articulate – in specific ways, at the expense of others – what I have always coexisted with. I partly gravitated to lyric poetry in my twenties because I felt unable or unwilling to give a diagnostic or biographical account of myself; the ‘I’ in lyric poetry can be a way of deflecting, re-orienting, complicating and cohabiting with the ‘personal shame’ that Denise Riley has described as inherent to existing in the first person. But being sick or disabled in our current medical and benefits systems forces one to linguistically self-identify with institutional language that fixes, pins and names, in a way that runs against what I consider to be the revolutionary potential of language. This often feels to me like a closing down of meaning, where the sick are prevented from imagining, or existing in poetic and non-representational forms of language. I’m obviously grateful for the diagnosis, but I think this question of how to exist sickly, in language, will be a lifelong preoccupation for me.
Your mixture of affirmation and shredding sounds just about perfect to me. For Christmas I gave my boyfriend Edmund White’s biography of Jean Genet, which includes this Paul Valéry quote that André Gide aspired to: ‘You mustn’t hesitate to do what will lose you half of your fans and triple the affections of those who remain’. The context of the passage is that Gide could afford it – he lived comfortably with inherited wealth, and never had to existentially muddy his writing with the notion of income. The eternally destitute Genet wrote to Gide to express his admiration, and, with palpable anxiety (‘I’m very concerned about the opinion of me that you’ll form on the basis of this letter’) to ask him for money. Then in a follow-up letter, Genet backtracks, or suggests that his previous letter was inaccurate and that his distress is ‘much more spiritual than material’.
I’m projecting here, of course, but it makes me think of the times I’ve become ashamed for drawing attention to the financial precarity of writing, or trying to exist in the ‘industry’ without a safety net. As if my doing so is not only crude, but a sign that my priorities are misaligned, my sensibility lacking, for not placing pure literature highest among my concerns. I wonder if Genet, receiving no reply from Gide, backtracked with a similar kind of masking – he had to reiterate that his crisis wasn’t ‘material’, but ‘spiritual’, as if the two are unrelated, and the latter is more intellectually noble than the former. (It turns out, by the way, that Gide never replied to Genet’s letters or requests for funds at all.)
I don’t want to spend all my time talking about access and material conditions. It’s not only boring for me and anyone privy to it, but I also fear its long term, corrosive effect on thinking and writing. At art school, my encounters with institutional critique led me to stop making art altogether; I over-analysed my way into a dead end, where it felt like making art that didn’t acknowledge the absurdity and exploitation of the institution was fraudulent or complicit, but at the same time, I had no interest or libidinal investment in making art whose main function was critique. That was when I started writing seriously, I think, as an escape route for pleasure (little did I know!). Maybe there’s an under-articulated class aspect to this too, analogous to the way that benefits claimants with mental and physical health issues will experience a worsening of those issues by having to constantly articulate them and submit them to punitive monitoring, in order to qualify for the very help they need to manage those – now-worsened – issues.
As for next work – it feels like a departure, although not necessarily at the level of form or content. I’m working on fiction, but primarily I am learning to create and inhabit the lived fiction of a person who sits down to write without all their worries about rent and health seeping into the text. Maybe this is what all writers do to some extent. It’s just taken me a long time to develop that kind of filter.
Husain:
There’s something bleakly important in these connections you’re making between the overdetermining language games of funding applications, medical petitions and benefit claims – about how the language that bureaucracy demands of anyone who needs anything from it imprisons them in a situation of need. I certainly felt that way about the migraine ‘paperwork’ needed to justify the expense of my various medications. You can’t get a prescription unless you keep meticulous daily records trying to quantify the pain and codify the impact of the illness on your life. I kept up with all that for years before I let myself wonder if I was just witnessing and certificating away my chances of any other kind of experience.
In that sense I think I know what you mean about the depletion of imaginative capacity. In terms of the extraction that leads to that depletion, I wonder if there’s something in the way that bureaucratic institutions engage us so intensely in their data-gathering exercises in ways that we know will never come back to actually help us. It’s so hard to know how to deal with this on an individual level. It’s all very well to say ‘stop doing the paperwork’, but sometimes – if you’re claiming benefits for example – it really matters that the world will still be built around the paperwork; that you need to fellate the paperwork just to survive. It really bears complaining about, which as you point out is such a shame because the all the complaining really craps on our spiritual sensibilities.
I’m so drawn to this suggestion of ‘poetic and non-representational forms of language’, as I am by working out completely non-linguistic ways of moving more easily through the world. I guess we just have to pursue this where we can – elbow by elbow, to try and edge out that extractive, bureaucratic worldview with something better.
