Lessons from Susan Sontag

Introduction

A genealogy can homogenise and simplify the history and complexity of a field through a series of forgettings and generalisations. For example, the history of disability studies is often (re)told as a series of ‘waves’ (Davis 2006; Goodley 2017), and this siloing approach risks fixing ideas within eras and eliding alternative perspectives. In the context of feminism (also often genealogised as a series of ‘waves’), Hemmings (2005, 131) argues similarly that a teleological and binary narrative dominates the story of feminist theory, where writers and ideas are fixed within time periods, and the ‘specificity of feminist accounts of difference, power and knowledge at all points in the past…is elided’. Reflecting on this argument, Nicholas and Budgeon (2021, 159) note that homogenisations and binary oppositions serve to ‘frame whole bodies of work as “problematic” or outdated, and to relegate a plethora of work as irrelevant’. For example, some in feminist theory pit all of 1970s scholarship as essentialist or suggest that the 1980s was dominated by only two mutually exclusive factions of the ‘sex wars’ (Nicholas and Budgeon 2021). Disability studies follows a similar trend, the ‘waves’ of disability studies; the movement from the medical to the social model; the ‘paradigm shift’ from disablism to ableism; the evolving dominance of professionals, parents, and self-advocacy; or by framing some scholars as situated in certain theoretical camps (for example, Tom Shakespeare is often described exclusively as a realist, despite his work being more expansive than this; Shakespeare 2014). Each of these teleological, binary, and oppositional claims elide the nuances and tensions operating therein. There is arguably a need to reject a narrative arc of (linear) ‘progress’ that chastises and repackages the past, and to instead excavate a more complete genealogy that helps inform our present and future.

Seeking to depart from (or correct) some of the tensions described above, this article seeks to add to our genealogies of disability studies, to revisit ‘older, forgotten, out of fashion or seemingly incompatible…theories’ (Nicholas and Budgeon 2021, 160), and speculate their resonances and potentialities for disability studies’ present and future. Focusing on ‘first wave’ disability studies, I critically examine Susan Sontag’s scholarship, and particularly her focus on the use of metaphor regarding illness, to consider the resonances of these arguments to (contemporary) disability studies. While Goodley (2017, xiii) argues that ‘[c]ontemporary times require contemporary theories’, I am more interested in multiplying our fields’ genealogies to help disability studies become a more legitimate interdisciplinary field. Engaging in disability studies’ multiple pasts may help expand the narratives and histories that give disability meaning. Remembering forward requires considerations of what has been forgotten, de-contextualised, simplified, homogenised, or misrepresented from their collective histories (Nicholas and Budgeon 2021).

Susan Sontag’s scholarship may not ostensibly ‘fit’ within the language of disability studies, but this does not mean her work is irrelevant or incompatible. Lennard Davis, in fact, includes a chapter from Sontag’s (1989) AIDS and Its Metaphors in the first edition of the Disability Studies Reader. Bringing together a diverse set of texts, Davis (1997, 4) acknowledges that while these ‘works might not have been seen as existing under the rubric of disability studies’, he nevertheless ‘recuperates and includes this earlier work as a retrospectively organized set of originating documents’. However, when we get to the fourth edition published in 2013, Sontag’s chapter is absent, it has not appeared in any edition since, and her scholarship has largely been forgotten or ignored from disability studies’ canon (Davis 2010; Davis 2013). Engagements with Sontag’s work in disability studies has waned more than waxed and is used fleetingly by scholars such as Linton (1998), Shakespeare (1994), Sherry (2004), and others. One of my main objectives in this article is to (re)introduce Sontag’s work, to highlight its merit for the field, and perhaps more provocatively, to highlight what disability studies has lost through such collective forgettings.¹

Focusing on two texts from her oeuvre—Illness as Metaphor (1978) and AIDS and Its Metaphors (1989), as well as her Rolling Stone interview with Jonathan Cott (2013)—I focus on Sontag’s work on the use of metaphors regarding illness and consider the resonances of these arguments to disability studies.² Observing the ways in which illness and disease is metaphorised and mythologised, Sontag’s (1978, 3) primary argument is that ‘illness is not a metaphor, and that the most truthful way of regarding illness—and the heathiest way of being ill—is one most purified of, most resistant to, metaphoric thinking’. Sontag’s (1978) injunction is hard to shake given the ways that society has historically accounted for and metaphorised disease and illness; as Wald (2008) notes, prior to certain advances in science and communicability (that is, the way diseases may spread from one person to another), people had no discursive language other than pointing to religious, social, or environmental explanations (or metaphorisations, such as the claim that disease came from the Gods). Sontag (1989, 5) likewise acknowledges that ‘one cannot think without metaphors’, but that does not mean that ‘there are some metaphors we might well abstain from or try to retire’. Metaphors are often deceptive and damaging, and disability studies has long noted their harms, as Dolmage (2005, 112) asks, ‘why have metaphors of disability come to entail all manner of negativity?’ Metaphoric writing and thinking can be seductive and instructive just as much as it can be denigrating (Sontag 1978; Sontag 1989).

Sontag’s relative absence from the field of disability studies has led to gaps in our history and understanding of illness and metaphor. Think of the recent controversy regarding Elle Macpherson, for example, who publicly disclosed her cancer diagnosis and decision to reject traditional treatment in favour of a non-traditional ‘holistic’ approach (Tedmanson 2024). Writing in her memoir, Macpherson (2024, 310) explains her determination ‘to get to the root cause of having manifested cancer’ (italics added). Macpherson (2024, 310) describes the cause of her cancer as emotional/spiritual, and thus, her treatment should also be emotional/spiritual: ‘I knew it would be unwise to try to solve a largely emotional or spiritual problem in a purely physical way’. Macpherson’s (2024) comments led to considerable public critique, not least because of the impact that celebrity stories have to public health narratives and people’s decision-making practices (Nickel, Hooker, and Bell 2024).³ Experts warned that reporting of Macpherson’s case contained misinformation, and people may make ill-conceived decisions regarding their own treatment (Davey and May 2024). Sontag’s motivation was to encourage cancer patients to reject metaphors and come to grips with their predicament with medical professionals, but as this story suggests, Sontag’s lessons have been forgotten, ignored, or downplayed, which impacts the significance of disability studies today.

It may be that Sontag’s arguments were forgotten or ignored at the very moment they were most needed, and especially in disability studies. Since the publication of her work, a range of diseases and pandemics have (re)emerged—SARS, swine flu, Ebola, COVID-19, mpox, and so on—that shame and blame through metaphorisations, and it is disabled people who so often wear the material, deadly brunt of these pandemics (Colangelo 2021; Goggin and Ellis 2020). Not only are disabled people disproportionately affected, the logic of neoliberal-ableism thwart appropriate responses to pandemics (Colangelo 2021). Craig (2020, 1026) suggests that Sontag describes the ways in which ‘metaphoric language about different illnesses and the political and medical response to them are inextricably entwined’. The disease and the ‘diseased’ ‘suffers and represents the sins of the world’ (Wald 2008, 10; Sontag 1989). And let us remember, disability itself is so often used as a ‘metaphoric signifier of social and individual collapse’ (Mitchell 2002, 16). Metaphors are myths, and there is an urgent need to trouble the ways that metaphorising mythologises and pathologises illnesses, especially when too often perceptions slide into realities (Colangelo 2021; Wald 2008).

In addition to problematising the use of metaphor for a range of diseases and illnesses that are often disabling, Sontag’s (1978; 1989) arguments are part of a broader concerted effort that align with key principles within disability studies. In problematising the use and consequences of metaphor, Sontag (1978; 1989) points to the dangers of psychologising narratives and discourses and the harms of the political and medical establishment. Sontag (1978; 1989) attacks the use of metaphor in efforts to reassert patients’ agency that is otherwise removed through metaphorical language, and disabled people, scholars, and activists have long critiqued the ways that agency is stripped from many disabled people (Boyle 2014; Wilkerson 2002). Disability studies has also often troubled the dis/ability binary, and Sontag (1978) likewise identifies the opacity and slipperiness between illness and wellness (and in turn, dis/ability), thereby unravelling a binary that society is invested in keeping intact (McRuer 2006). Even if it has not been explicitly conceptualised as such, Sontag’s (1978l; 1989) work contributes to the ongoing political project involved in disability studies, and it is worth acknowledging this lost genealogy and considering what these otherwise occluded insights can offer.

In what follows, I provide a critical reading of Sontag’s (1978; 1989) work and discuss its resonances with disability studies. I note that her critique of metaphor is incredibly consequential for disability studies, especially given that disability often serves ‘as a metaphor for things gone awry with bodily and social orders’ which create a ‘cumulative material impact on cultural attitudes toward disabled people’ (Mitchell 2002, 24). Sontag (1978; 1989) shows us that metaphors matter, and that we should be more critical of their usage, particularly in disability-related contexts (Siebers 2008). Engaging with Sontag’s work additionally helps extend the boundaries of (conventional) disability studies and encourages multidisciplinary and capacious engagements and forms of knowing (Garland-Thomson 2002). Sontag helps broaden disability studies subjects through considerations of populations not ordinarily considered within the ambit of disability studies (chronic illness, for example). Engagements with Sontag’s work both strengthens and extends the reach of disability studies. Noting Amin’s (2020) claim that a genealogy can help identify new roots that have otherwise been ignored, forgotten, or covered over, remembering forward Sontag’s work helps provide broader frameworks and ideas that can help reimagine our thinking and theorising.

Sontag and Illness, Sontag and AIDS

Despite Sontag’s (1978, 3) central thesis in Illness as Metaphor (and later, AIDS and Its Metaphors), she commences her text with, curiously, metaphorical flourishes:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Sontag (1978) seeks to convey a few points here, the first of which is demonstrating the power and grab of metaphors (evidenced by this quote being one of Sontag’s most cited Wohlmann 2022). In AIDS and Its Metaphors, Sontag (1989, 5) suggests she deliberately prefaced the essay ‘with a brief, hectic flourish of metaphor, in mock exorcism of the seductiveness of metaphorical thinking’. Sontag seeks to undermine metaphorical thinking through their usage. Fulk (2021, 150) argues that Sontag’s usage of metaphor is intended to ‘catch the reader’ to the problems of metaphor, where the reader is seduced into taking metaphors as reality or truth, yet, in fact, they distort or obscure our thinking. Holmes (2011, 265) suggests that Sontag’s tactic works as a ‘space-clearing move—a statement that elbows out the walls that constrain our thought and slaps us awake to the meanings in too-familiar words’. Sontag (1978) also demonstrates the opacity and fluidity between wellness (abled) and illness (disabled). Everyone holds ‘dual citizenship’ (Sontag 1978, 3), identifying a truism pervading disability studies: everyone will become disabled at some point, if they live long enough (Colangelo 2021; McRuer 2006). Sontag (1978) deconstructs the valorised subject position society values: well, healthy, and abled (Goodley 2014). Sontag’s articulations of illness and corporality highlight the reality and inevitability of death and vulnerability.

In Illness as Metaphor, Sontag (1978) draws upon a diverse set of texts regarding tuberculosis and cancer—and, to a lesser extent, syphilis and insanity—and criticises and belabours the use of metaphorical thinking and language centring around them. Sontag (1989, 5) defines metaphor as ‘saying a thing is or is like something-it-is-not’, and uses alternating (synonymous) terms such as ‘mystifications’, ‘modern fantasies’, and ‘myths’ throughout the text. For Sontag (1978), metaphors distort our thinking because they come to ‘stand in’ for the real thing. Metaphors circulating about tuberculosis and cancer suggest character can cause disease, or that disease reveals one’s character, such as the claim that cancer, for example, results from the inhibition of repression or anger (as, perhaps, in the case of Elle Macpherson, who blamed her diagnosis on her negative emotional and spiritual state [Tedmanson 2024]). Sontag (1978, 21) writes: ‘today many people believe that cancer is a disease of insufficient passion, afflicting those who are sexually repressed, inhibited, unspontaneous, incapable of expressing anger’.⁴ The problem with this psychologising discourse is that it blames and responsibilises individuals; the metaphor erases the subject at the same moment that it makes the subject responsible. In her discussion with Jonathan Cott, Sontag (2013, 62) suggests that metaphors constrain rather than expand our thinking: ‘when you say, for example, “illness is a curse,” I see that as some kind of collapse in thinking—it’s a way of stopping thinking and just freezing people in certain attitudes’. For Sontag (2013, 62), this ‘collapse in thinking’ has material (and potentially deadly) consequences.

Sontag (1978; 1989) criticises metaphors not just because they are hurtful but also because they are dangerous and harmful. Metaphorising illness and disease, such as in cancer or AIDS, with ‘moral decay’, ‘individual weakness’, ‘moral judgement’, or ‘social disorder’ means illnesses and diseases become characterological (Sontag 1978; Sontag 1989). In so doing, metaphorising significantly demonises patients, exacerbates suffering, erases lived experience, and curtails patients’ agency. Patients may start to blame themselves for their situation and subscribe to the fiction that mind rules matter (Sontag 1978; Sontag 1989). Fulk (2021, 149) explains that the ‘way illness becomes metaphor instead of the “facts” of illness, means that this rhetoric is given moral meanings that may damage the patient rather than help the patient recover or at least suffer in dignity and truth’. Metaphors unhelpfully moralise and responsibilise. Psychological discourses saturate metaphorical language:

there is a peculiarly modern predilection for psychological explanations of disease, as of everything else. Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control. Psychological understanding undermines the ‘reality’ of a disease. That reality has to be explained. (It really means; or is a symbol of; or must be interpreted so.) (Sontag 1978, 55).

Later Sontag (1978, 56) suggests that if disease is afforded a psychological explanation, ‘death itself can be considered, ultimately, a psychological phenomenon’. This ‘collapse in thinking’ results in material outcomes: the patient may reject treatment or feel no or little agency in their treatment (Sontag 1978). Sontag (1978) finds military metaphors particularly damaging, such as the metaphor that cancer is an invasion of the body, as this further reduces agency by turning the body into a landscape or blank canvas upon which ‘warring doctors’ battle ‘invading cancer’. The growing wars—the war on drugs, the war on poverty, the war on cancer—have not necessarily led to better outcomes but rather demonised the wars’ subjects (drug users, poor people, and cancer patients) (Prosser 2009). Sontag (1989, 95) counters that ‘we are not being invaded. The body is not a battlefield. The ill are neither unavoidable casualties nor the enemy. We—medicine, society—are not authorized to fight back by any means whatever’. Metaphorising obscures the ‘here and now’ and takes us into an analogic, unhelpful place.

Disability studies has long noted the limitations of metaphor, and David Mitchell is a key figure in this area. Mitchell’s (2002) work resembles and parallels, but does not explicitly descend from, Sontag’s work. The former troubles disablist metaphors while the latter troubles metaphors altogether. Mitchell (2002, 24) has persuasively argued the dangers of metaphor in disability contexts, arguing that the disability category often operates as a ‘master metaphor for social ills’. Mitchell (2002, 25) argues that disability metaphors ‘serve to extrapolate the meaning of a bodily form into cosmological significance’:

blindness may represent the incapacity of humanity to see into the future; lameness can designate the crippling effects of social ideologies; physical deformity may symbolize corrupt corporate policies; deafness may represent a refusal of leaders to listen to their constituencies; diabetes might conjure up images of a gluttonous commodity culture; amputation can provide evidence of an unchecked medical industry; and so on.

Disability metaphors mythologise different meanings upon phenomena and simultaneously work to (re)produce stigmatising attitudes towards disabled people. The movement from ‘concrete experience’ to ‘abstract commentary’ works to elide the embodied experience of disabled subjects, foreground ‘deficiencies’, and represent disability as (individual and collective) breakdown and disorder (Mitchell 2002; Vidali 2010).

In AIDS and Its Metaphors (1989), Sontag provides further context to her earlier work, Illness as Metaphor (1978). Motivated by her own experience as a cancer patient, as well as her own father who died from tuberculosis (Fulk 2021), Sontag (1989, 13) suggests that:

I didn’t think it would be very useful—and I wanted to be useful—to tell yet one more story in the first person of how someone learned that she or he had cancer, wept, struggled, was comforted, suffered, took courage…though mine was also that story. A narrative, it seemed to me, would be less useful than an idea.

Sontag’s polemical style is more suited to an idea than an autopathography. Writing the polemic ‘spurred by evangelical zeal’ (Sontag 1989, 13), Sontag recounts:

the purpose of my book was to calm the imagination, not to incite it. Not to confer meaning, which is the traditional purpose of literary endeavor, but to deprive something of meaning: to apply that quixotic, highly polemical strategy, ‘against interpretation,’ to the real world this time. To the body. My purpose was, above all, practical. For it was my doleful observation, repeated again and again, that the metaphoric trappings that deform the experience of having cancer can have very real consequences: they inhibit people from seeking treatment early enough, or from making a greater effort to get competent treatment. The metaphors and myths, I was convinced, kill (1989, 14).

Sontag (1989) sees metaphors as denigrating patients and removing their agency, and her intervention seeks to reassert that agency. Sontag (1966) reinvokes the term ‘against interpretation’, the title and subject of her earlier and most famous work, which advocates suspending our (rush to) judgement and interpretation in art. For Sontag (1966), too much focus is placed upon interpreting the ‘inner meaning’ of art, and such practices create a hermeneutics that legitimises dominant readings while other perspectives are delegitimised—overall lessening our experience with art.

Sontag’s argument ‘against interpretation’ in this earlier work is echoed in Illness as Metaphor and AIDS and Its Metaphors. ‘I wanted to offer other people who were ill and those who care for them an instrument to dissolve these metaphors’, Sontag writes (1989, 14), ‘I hoped to persuade terrified people who were ill to consult doctors, or to change their incompetent doctors for competent ones, who would give them proper care’. Sontag (1989) advocates for a world with better healthcare that is rid of moralising and metaphorising psychologising language that shames and blames. Sontag (1989) wants people to recognise their agency. De-metaphorising our thinking means we can regard illness ‘as if it were just a disease—a very serious one, but just a disease. Not a curse, not a punishment, not an embarrassment. Without “meaning”’ (Sontag 1989, 14).

AIDS and Its Metaphors (one of Sontag’s least successful works)⁵ provides important context to Illness as Metaphor (one of her most successful), but the former work also demonstrates the powerful ways that metaphors work as a form of judgement and social control. Sontag (1989) tracks the ways in which the metaphors circulating around AIDS moved from an ‘epidemic’ to a ‘plague’. Metaphorising AIDS as a plague helps serve two functions. First, one ‘feature of the usual script for plague … [is] the need to make a dreaded disease foreign’ (Sontag 1989, 47). This enables the responsibilisation of a particular group (people of Africa, and later, gay men). Second, once it becomes a ‘plague’, AIDS can be read as a moral judgement on a group (namely, gay men) and a broader attack on changing (more liberal and progressive) sexual mores of the time. A plague ‘invades’ the individual and collective body; the virus ‘invades’ and condemns the individual for their ‘moral failure’, and collectively it seeks to reassert social control by re-establishing sex-negative and conservative principles (think of Jesse Helms, for example, who tried to use the AIDS crisis to strip back freedoms and reassert authoritarian politics [Colangelo 2021]). Sontag (1989) sees the AIDS period marked by the end of modernism. AIDS, and the broader socio-political context, created ‘general fears about the future’ (Sontag 1989, 92), and a generalised anxiety about a (postmodern) future that is far from certain (Fulk 2021).

Notwithstanding the harms of metaphors, they remain persistent, and it is difficult—if not impossible—to eradicate them completely. Sontag (1989, 94) acknowledges that ‘not all metaphors applied to illnesses and their treatment are equally unsavory and distorting’. Holmes (2011) likewise suggests that some metaphors can be liberating for patients just as much as they can be destructive, and Sontag (1989) recalls some as empowering during her own experience with cancer. While Holmes (2011, 270) remains ambivalent, from a sympathetic viewpoint, she can see their productive function as a form of prosthesis, where metaphors can operate as ‘verbal tongs, tools for holding our own or another’s embodiment away from us until a better time comes for right engagement’. Sontag (1989, 5) clarifies:

of course, one cannot think without metaphors. But that does not mean there aren’t some metaphors we might well abstain from or try to retire. As, of course, all thinking is interpretation. But that does not mean it isn’t sometimes correct to be ‘against’ interpretation.

Recognising that metaphors are ineradicable, Sontag (2013, 60) describes them (ambivalently) as a ‘necessary fiction’ requiring ‘extreme skepticism’ towards them. Sontag (1989) encourages us to relinquish problematic metaphors from our vocabulary. Importantly, metaphors ‘cannot be distanced just by abstaining from them. They have to be exposed, criticized, belabored, used up’ (Sontag 1989, 94). Sontag (2013, 62) argues that we ‘should be critical and skeptical of the ones you’ve inherited so that you’re unclogging your thought, letting in air, and opening things out’. Sontag’s (1978; 1989) rejection of metaphors is thus selective rather than absolute. Some metaphors may be non-problematic while useful ones may indeed come along. Sontag (1989, 95) identifies the military metaphor as the most problematic and suggests we ‘give it back to the war-makers’. Metaphors need to be read and used critically rather than simply accepted as taken-for-granted (Holmes 2011).

Sontag and Disability Studies

Sontag’s work and life made popular and academic impact (Fulk 2021). Ten years following the publication of Illness as Metaphor, Sontag told an interviewer that ‘hundreds of people have written to me and have said that it saved their lives, that because of the book they went to a doctor or changed their doctors’ (cited in Clow 2001, 293). Sontag’s arguments also influenced academia as researchers began to research illness narratives, patient experiences, and health cultures, and her work has been particularly impactful in the medical humanities and literary studies (Clow 2001; Wohlmann 2022). Although Sontag’s work had impact, it has also been criticised. Critiques include the fact that the books have not aged well due to the advances in scientific knowledge; that the books were based on ‘feeling’, ‘experience’, and ‘argument’ (Sontag acknowledged the non-systematic research that informs them); and that metaphors remain useful to many and unavoidable to all (Clow 2001). Notwithstanding, Sontag’s work remains consequential and insightful, and while ‘the world in which these essays were written no longer exists’ (Sontag 2002, 271), I suggest the works still provide resonances for the field of disability studies today.

Recognising disability studies’ forgotten genealogies remains vital to the ongoing history and understanding of the field. Sontag’s (1978; 1989) work mirrors part of the disability studies story that is preoccupied with problematic language and their effects (Goodley 2014; Linton 1998; Mitchell and Snyder 2000). Metaphors are used to be ‘morally severe’ (Sontag 1978, 85), but they disguise lived experience, negatively shame and blame the disease and the ‘diseased’, and result in material consequences. Disability studies routinely critiques disability metaphors, but Sontag’s work also illustrates the broader consequences of metaphorising and draws our attention to the general problematics of metaphors (not just disability metaphors). Contemporising Sontag’s (1978; 1989) work helpfully illustrates the enduring nature of ableist and disablist metaphors and perhaps encourages renewed attention that invite better ways of communicating and understanding.

Drawing upon Sontag’s (1978; 1989) work, Holmes (2011) provides a key illustration of the work and harm that metaphors do in disability contexts. Noting that the verbal shorthand for someone lacking awareness may be described as ‘blind to reality’, Holmes (2011, 264) argues that these ‘linguistic practices inscribe and reinscribe visually impaired people as lacking awareness, just as these practices invisibly and implicitly brand deaf and hard-of-hearing people as individuals who (sometimes wilfully) fail to recognize what is before them’. Holmes’ (2011) example illustrates the ways in which metaphors create (problematic) relationships and impute meaning. Disability studies scholars have heavily critiqued the usage of disability metaphors because they often elide lived experience, emphasise deficiencies, and represent disability as disorder, all of which affect disabled people and perpetuate negative stereotypes and discrimination (Vidali 2010). Mitchell (2002) likewise notes that modern societies largely construct disability as a problem, and this inevitably spills over into the negative representations of disability in literature, art, media, and elsewhere. Remembering Sontag in disability studies encourages renewed focus on the place of metaphors that construct and represent disability in problematic ways.

As aforementioned, Sontag shows the ways in which a metaphor erases the subject at the same moment that it makes them responsible. A metaphor clouds or obscures the ‘reality’ of events, and yet nevertheless responsibilises the subject for the very circumstances they are found in. ‘Illness as a curse’, for example, hides the reality of the illness while it places blame upon the afflicted person (as a ‘curse’ or ‘cursed’). Prosser (2009) notes that Sontag’s intention was to encourage people to move away from metaphors of illness because they create distance from illness’ ‘reality’. When negative disability metaphors pervade—one may be ‘crazy’, ‘blind to the truth’, the ‘blind leading the blind’, or ‘deaf to reason’—one finds value in Sontag’s attempt to pare down metaphors and undo meaning (Prosser 2009).

While it is true that some metaphors may not be problematic and some may even be helpful, it is also worth noting the political weight that some may carry, and especially during pandemics such as COVID-19. Metaphors during pandemics remain relatively stable, often regarded as an invasion, a punishment, or a war that must be fought (Sontag 1978; Sontag 1989; Wald 2008). The militarisation of the COVID-19 pandemic facilitated a war on multiple fronts: a ‘war’ against the virus, a ‘war’ between the healthy and the sick, a ‘war’ against the cause (often alleged to be China), and a ‘battle’ to find an appropriate vaccine. The deployment of these metaphors also gave permission for considerable political intervention, such as Operation Warp Speed (derived from Star Trek) in the United States (and similar iterations elsewhere), that directed resources, created competition, prioritised speed, induced panic, spurred nationalist sentiment, stigmatised particular groups, and created inequities during the vaccine rollout (Andersen 2023). As Sontag (1989, 94) wrote more than 30 years ago, the military metaphor ‘provides a persuasive justification for authoritarian rule … [and] implicitly suggests the necessity of state-sponsored repression and violence’, and these arguments remain prescient. Some metaphors may be consoling—many leaders, for example, said there would be ‘light at the end of the tunnel’—but Sontag’s (1978; 1989) wary suspicion towards dangerous metaphors is still worth remembering.

Sontag’s work shares disability studies concern with psychology and the broader medical establishment. In Illness as Metaphor, Sontag (1978, 57) argues that ‘psychological theories of illness are a powerful means of placing blame on the ill’. Sontag (1978, 57) argues that some patients are instructed they have ‘caused their disease’ and thus ‘made to feel that they have deserved it’. This is a fairly common trope within disability studies; just think, for example, of the formerly ‘abled’ person who becomes ‘disabled’ and the psychologising (blaming and responsibilising) discourses that often pervade (Clare 2017). Goodley (2017) suggests psychology is often individualistic (examining ‘bodies’, ‘brains’, and ‘behaviour’); bourgeois (the majority determine the rules and norms for the minority); apolitical (seeks to change individuals rather than society); professionally-led (experts over ‘laypeople’); pseudo-scientific (adopts ‘ology’ and gives itself the status of science); normalising (abnormal behaviour is bad); and oppressive (anyone abnormal is bad). This does not bode well for the disabled subject who is constituted through their departure from ‘normality’. Sontag (1978, 55–56) argues that much of psychology is merely a ‘sublimated spiritualism’ invested in a ‘secular, ostensibly scientific way of affirming the primacy of “spirit” over matter’. Disability studies has often been wary of psychology (Goodley and Lawthom 2006), and despite increasing cross-pollinations between the two fields, Sontag’s work highlights a cautiousness worth remembering. Psychology is still a heavily normative project and Sontag’s work may be worth remembering and using, particularly when disabled people are constituted through their departure from the norm.

While some of Sontag’s (1978; 1989) conclusions may be unevidenced, there is certainly merit in critiquing the medical establishment and the ways in which they regulate and constitute disabled and unwell populations. Campbell (2009. 221) argues that medicine has ‘operated as the primary paradigm not only for the treatment of disabled bodies but has also shaped the way decision makers, legislators, families and society in general think about and sense disability’. The medical establishment largely constitutes disability as a problem to be fixed (Campbell 2009). Asymmetries of power pervade medical institutions as patients are subject to medical paternalism (Delmar 2012). One does not need to spend much time in a hospital to recognise they are unhappy places as the medical gaze objectifies (and pathologises) the body (Foucault 1973). Disabled people are subject to particular scrutiny and may experience diagnostic overshadowing, wherein symptoms are attributed (and in turn, dismissed) to the person’s impairment (Mason and Scior 2004). Diagnostic overshadowing exacerbates disabled people’s health needs as diagnosis is misattributed and treatment is denied (Mason and Scior 2004). Patients’ agency is reduced or removed amidst a climate that the ‘doctor knows best’ (Jackson 2018). Sontag (1978; 1989) critiques the medical establishment’s ways of doing and knowing and pleads for patients to take their agency back.

Sontag’s work also helps extend the reach of disability studies. Disability studies has always been interdisciplinary in scope, but it is largely situated within the social sciences (e.g. sociology, social work, psychology – especially in Australia and the UK); and humanities (e.g. literary studies, performing arts, cultural studies – especially in North America) (Watson and Vehmas 2020). Disability studies also often identifies itself as such and can at times be too current, internal, and inward-looking as it generates its own knowledges (Watson and Vehmas 2020). Halberstam (2012) suggests scholars need to undiscipline themselves and find new narratives unencumbered by disciplinary training. Focusing on the ‘here and now’ and dominant ideas also elides alternative perspectives and histories that have shaped the field. Engaging with literature on the ‘outside’, or lost and forgotten genealogies, builds fresh ideas and concepts and broadens the scope of the field. Disability studies impacts, and is impacted upon, other disciplines, and scholars in disability studies are drawing upon an increasingly diverse range of literature just as much as other disciplines draw upon disability studies’ ideas (Watson and Vehmas 2020). There is much more to disability studies; think of Sander Gilman’s (1995) work on images of illness and difference, Elaine Scarry’s (1985) work on pain, Lenore Manderson’s (2011) work on bodily change and chronic illness, or Erving Goffman’s (1968) work on stigma as just some examples. The richness of disability studies means that there is much to draw upon internally and historically, but promiscuous readings and engagements can enrich all fields and extend the corpus of disability studies knowledges. Seeing Sontag’s (1978; 1989) work as part of disability studies’ history helps historicise and legitimise the field.

Finally, Sontag’s work helps broaden disability studies subjects. Definitions of disability have always been fraught as activists and scholars’ debate who is and is not included within the category of disability. Sontag’s work illustrates the merits of capacious approaches that are unencumbered by intractable identity questions. Disability studies has historically had an uneasy relationship with illness, disease, and mental health needs—or groups sitting on the periphery that are not thought to fully encapsulate the ‘disability’ category—yet Sontag moves beyond identity questions and instead sees politics as the central battlefield (Beresford and Russo 2016; Grue 2017). Sontag’s work shares resonance with Cohen (1997) in the contexts of queer theory; the goal should be organising and uniting on the basis of an ethos or politics rather than an identity. There is merit attached to broadening the scope of who we ‘include’ in the field; in fact, we should move beyond such inclusion/exclusion and instead fashion a politics with which to oppose power and build better worlds (Tremain 2001).

Conclusion

Susan Sontag’s work may appear quaint (or outdated) for the contemporary scholar, but her work remains consequential, and it is worth thinking critically about the use of metaphors. Sontag’s work contributes to discussions surrounding the ways in which we—patients, people, and practitioners—think and speak about health and illness. Wohlmann (2022, 66) notes that ‘our culture has projected meanings onto diseases, and that when these meanings have become accepted, the disease and its associations are projected onto the world’. Sontag’s work in Illness as Metaphor (1978) and AIDS and Its Metaphors (1989) is an intervention into this practice, inviting us to pause, reflect, and resist the danger that comes with this way of thinking. Jurecic (2012, 91) observes that Sontag’s work remains relevant because metaphors provide ‘a narrative framework for engaging with the suffering of others’. Perhaps, though, we need to recall Sontag’s (1978, 3) exhortation that ‘illness is not a metaphor, and that the most truthful way of regarding illness—and the heathiest way of being ill—is one most purified of, most resistant to, metaphoric thinking’. For Sontag, we need to stop the sentimentality and melodrama, and disability studies scholars and activists know only too well the harms and dangers that language can do.

There is often a generalised impulse to focus on the ‘here and now’, but revisiting and remembering old texts helps provide further context to a field’s history, present, and future (Nicholas and Budgeon 2021). Rubin (2011, 355) also argues that ‘[a]ny scholarly project can benefit from an accumulation of knowledge that can be evaluated, validated, criticized, updated, polished, improved, or used to provide new trails to investigate’. Sontag’s work in disability studies has largely been forgotten or ignored but this does not mean it is irrelevant. Sontag’s work may no longer appear in the Disability Studies Reader, but it still haunts its pages. Later editions explicitly cited Sontag’s work (see, for examples, Brown 2013; Hevey 2013; Prendergast 2013; Straus 2013), her scholarship continues to hold insight, and helped build a field. In the most recent edition to the Disability Studies Reader—its sixth—Davis (and now, Sanchez and Luft) write:

[t]his edition, as did previous ones, enthusiastically brings in new topics, scholars, writers, artists, and chapters while it regretfully parts with others. Because of Taylor & Francis’s ongoing commitment to The Disability Studies Reader, we have been able to think of the text as an evolving and changing collection of chapters rather than a canon frozen in one unchanging volume. Since 1997, we have averaged a new edition every three or four years, allowing us to keep up with ongoing developments while also preserving a sense of the foundational history of the field (Davis, Sanchez, and Luft, 2021: xviii).

Rightfully acknowledging disability studies as an evolving field, the editors look to the past, think about the present, and wonder what the future holds. They reflect further that earlier chapters in past editions ‘did not always reflect the full range of experiences of disability’, and that the contemporary field is vibrantly rich because it is both addressing specific gaps and the ‘broader systems that produced them in the first place’ (Davis, Sanchez, and Luft, 2021, xvii). They survey its readers ‘to get a sense of which areas need inclusion and expansion’ (Davis, Sanchez, and Luft, 2021: xviii), and conceptualising disability studies as a work-in-progress enables the field to twist and turn. Sontag’s work is part of a rich tapestry that continues to inform the history and evolution of disability studies today, and it is worth remembering that when the past is often prologue.

Amin (2020) proposes that genealogies can identify new roots for the field that have otherwise been forgotten, ignored, or covered over, and it may be that Sontag’s work holds insights for the contemporary scholar. Reflecting on the global COVID-19 pandemic, Craig (2020, 1030) argues that ‘[w]e are in dire need of Sontag’s incisive polemics’. Why? ‘Because, even as the world appears to have spun backwards, language has the means to convey hope that it will one day spin forward again’ (Craig 2020, 1030). Paring down the use of metaphors remains attractive even as it seems unshakeable. Sontag’s work remains prescient and relevant. I am reminded of Nicholas and Budgeon (2021, 164) who describe the ‘joy of reading old classics or forgotten gems, how well they have aged and how relevant they (sometimes sadly) remain’. Sontag’s work helped inform ‘first wave’ disability studies, and while her exhortation regarding metaphors proves elusive, it nevertheless feels just as seductive as ever. Remembering Sontag’s work forward evidences the ongoing harms that metaphors hold, and against this backdrop, there remains value in multiplying our field’s genealogies to provide better frameworks for our contemporary thinking.

Competing Interests

The author has no competing interests to declare.