Explaining the Unexplainable: Theorizing the Starving of the Disabled Other

ABSTRACT

Every year, stories emerge of cases involving the starvation of disabled people, such as Ann Marie Smith in 2020 in Adelaide, Australia. Despite this, starvation practices against disabled people remain under-theorized. This may reflect that starvation as a topic is largely confined to international relations literature (e.g. during war), or conversely, in medicalized accounts pathologising the individual body (e.g. anorexia, Munchausen syndrome by proxy). More broadly, the “unique” starvation practices against disabled people are sidelined as rubrics of “neglect” or “abuse” take precedence, meaning we fail to engage with the specificity/particularity of starvation practices as forms of violence. Starvation practices against disabled people in interpersonal (or familial) contexts are qualitatively different; this article addresses this gap by providing a preliminary theorization of such violence. We survey the existing literature before invoking two frames – “Vulnerability and Harm by Design” and “Disability’s Deathly Status” – which we suggest provide an account of starvation as a form of violence. Rather than conceive these practices through an individualizing lens, we consider the broader social and institutional norms and practices that facilitate this conduct. We then turn to the promise of crip utopian futures in collective efforts to resist these cycles of violence and to promote interdependent, accessible, and crip socialities/futures.

Introduction

Ann (“Annie”) Marie Smith lived in the comfortable eastern suburbs of Adelaide, South Australia, surrounded by family and friends. Interpellated with cerebral palsy, Smith loved dogs, singing and dancing to ABBA songs, and her independence. Her parents built her a house as an adult to help her live comfortably and sustain her independence, but following their deaths in 2009, things started to change. Smith was provided with paid care from a registered service provider, but the quality of care deteriorated over time. She was active in a dog club community, but again, following the deaths of her two dogs, her engagement with the network disappeared. Much of Smith’s life remains a mystery to outsiders, and unfortunately, she is more well known for her death rather than her life. It is a sad reality that, for many people who did not know Ann Marie Smith, she exists only as a dead woman.

In May 2020, news dropped that Smith, then 54-years-old, died on 6 April 2020 from severe septic shock and multiple organ failure (Henriques-Gomes 2020). Police stated Smith had been stuck in a cane chair for 24-hours-a-day for more than a year, using the chair as her toilet, with no refrigerator or nutritional food found in the home. Smith’s entire body was covered in bodily fluid, she had severe pressure sores over most of her lower body, and yeast infections under her breasts. Incredibly malnourished, Smith’s bottom teeth decayed and fell out, and her body was decaying down to the bone. Smith starved and rotted to death.¹ Neighbors reported they had not seen her for several years, but she did have a sole carer who has since been sentenced to six years imprisonment for manslaughter by criminal neglect (Tlozek 2022). During court proceedings, the defendant’s lawyer made statements implying that Smith was partially responsible for the circumstances leading to her death because she was “difficult” and “stubborn,” and that the carer was also a victim (Campbell 2022). Two directors from the company responsible for Smith’s care have also been charged with criminal neglect causing death (AAP 2022).

Smith’s story sits alongside several practices – including segregation, institutionalization, restraint, neglect, hate crime, normative violence, and so on – that routinely regulate and violate disabled bodyminds (Thorneycroft 2020, Thorneycroft and Asquith 2021, Rowe et al. 2022). The devaluation of Smith’s life and her treatment is a scandal (Cranko 2022, Hough 2023), and People with Disability Australia (2020: np), the peak national body, stated that Smith, like so many other disabled people, was “failed by the systems and people who were meant to keep them safe.” The prevalence of malnourishment specifically is normalized within disability institutional settings (Dietitians Association of Australia 2020), and it is important to consider the various forms of violence and their intersections and dis/similarities that routinely give license to the constitution, regulation, and violation of disabled bodyminds. An article inspired by the news of Smith’s death could take into account many elements: the range of conduct (neglect, abuse, violence, starvation), lenses available for analysis (disability, gender, class, age), issues at play (social support, interdependence, prejudice), and disciplinary perspectives (social work, public health, disability studies, criminology, sociology). Understanding the circumstances surrounding Smith’s death is complex and raises numerous and pressing social issues that warrant interrogation. In this article, we are concerned with ongoing stories of disabled people being starved to death.² As a result, we foreground two objects of analysis – starvation and disability – to theorize the violent act of starving the disabled Other.³ Starving disabled people to death involves sustained in/action against a precaritised body, often taking place over many weeks, months, and sometimes years. The central pursuit of our article is a desire to understand the conditions under which such horrific behavior and violence can take place.

We choose starving as the focus of our analysis because the events underpinning it are not new. Only a few days after Smith’s story made the news, Australians were confronted with the death of Willow Dunn, a four-year-old girl with Down syndrome living in Brisbane, Queensland, who was left to starve to death in her cot (Roberts and Swanston 2020). On the same day, news emerged about the plight of two neurodiverse brothers who were found severely (and nearly, fatally) malnourished having been kept captive in a single unfurnished room for most of their lives. They were only identified after their only carer, their father, was found dead on the front lawn of the family home (Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability, 2023, Vistonay, 2020). There are many other Australian stories. Joshua Djuric, who lived with neurodiversity, was eighteen when he was found dead from starvation in Sydney, New South Wales, in September 2022 (Hildebrandt and Reddie 2022). Disabled woman Kyla Puhle, aged 27, died in Adelaide, South Australia, in 2011 in her beanbag after her parents fed her less and less. Puhle weighed just 12 kilograms when she was found dead (Marcus 2013). Nine-year-old “Ebony” weighed 9 kilograms and was described as a “skin-covered skeleton” when she was found dead on New South Wales’ mid-north coast in 2007, also because of her parents in/action (Arlington 2009). But these stories are not an Australian or family (filicide) phenomenon. Other people and places are just as culpable. Kevin Davies, from the United Kingdom, was tortured, beaten, and starved to death by three friends in 2007 (Carter 2007), and Debbie Leitch, also in the United Kingdom, was starved by her mother in 2019 (The Telegraph 2023).⁴ Countless stories appear consistently in the news all over the world, yet like so many other instances of ableist and disablist violence, they are not counted or collected in any systematic manner (Byars et al. 2020).

And despite the frequency of these cases, finding (the right) theories of starvation is nearly impossible. Our exhaustive literature searches have gestured toward other things: from starving the self to starving the other, starving individuals to starving populations, deliberate starving and inadvertent starving. Starvation literature is so disparate because it is looking at disparate acts and phenomena. Fasting, hunger strikes, anorexia and bulimia, Munchausen syndrome by proxy, war, genocide, food (in)security, and so on; each different phenomena has its own theoretical account and disciplinary home. The specificity and particularity of starving is sidelined within analyses as broader rubrics of “neglect” and “violence” take precedence. This makes it complex to develop and articulate a theoretical account of starvation and specifically cases that involve starving disabled people to death. It is complex because it is difficult to fathom, and because existing starvation narratives and discourses are not quite the right “fit” to understand these practices as they occur in everyday, mundane settings, and as experienced by people (such as disabled people) who rely on others for care, including food. Accounts of trauma including starvation so often resist narrativisation because they exceed the grasp of discourse; they are “ … full of fleeting images, the percussion of blows, sounds, and movements of the body – disconnected, cacophonous, the cells suffused with the active power of adrenalin, or coated with the anesthetizing numbness of non-adrenalin” (Culbertson 1995: 174). And, yet, in this article we persist in narrativising that which appears unnarrativisable.

The purpose of our inquiry is to explore the conditions in which starving disabled people takes place. Given the act of starving often takes many weeks, months, or years, it is our contention that these events can be explained not only as individual forms of pathology, but through absences of interdependence and social support, and the discriminatory structures of social systems and institutions. Too often, though, offenders are scapegoated as individually “sick” and as solely responsible, or alternatively, through the lens of “mercy killings” or “compassionate homicide” (Young 2013). It is easy to identify individuals – the “perpetrator/s” – who fail in providing care due to inhumane practices such as restricting or denying food. While this is certainly part of the picture, we contest that this is not the entire picture; we argue that the issues and causes are much broader. To place the blame squarely on carers or the familial is to absolve those around them and society at large. As Butler (2004a: 16) has noted, “[o]ur acts are not self-generated, but conditioned. We are at once acted upon and acting, and ‘our’ responsibility lies in the juncture between the two.” It is important to recognize the individual in the collective and the collective in the individual, especially when responsibility or culpability is so often attached to one (e.g. individual) in the interests of absolving the other (e.g. collective). Accountability is thus elusive when responsibility is apportioned dispersively and disproportionately. For example, in one investigation of Smith’s death, it was noted that “[a]ny focus on Ms Smith, as a person, fell between the gaps of shared responsibility” between multiple agencies and people (Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability, 2021b: 5). It is also noteworthy that in many of these starvation cases the criminal charges are often downgraded, mitigating factors are heavily emphasized, and the “burdensome” nature of caring for disabled people is often highlighted. This discourse indicates breakdowns within and beyond the immediate environment, and begs the question: where are the systems and structures that should otherwise be there?

If it takes weeks, months, or years to starve someone, people outside of carers and the familial may know it is happening or, at the very least, hold concerns. Regardless of whether these starvation acts are known or not, the failure of systems to capture these violent, abjectifying experiences means that there are gaps in our social contract and our care for the other. These acts can be attributed to an individual “perpetrator,” but equally culpable is the society that fosters and enables violence (such as starving the other) to occur without accountability, or even accounting. Therefore, starvation is both direct and indirect violence. It requires a primary “offender” who withholds, as well as a society that permits the withholding of nutrition – from those too poor, too disabled, or incarcerated – which provides authorization for these practices within the private sphere of ableist and disablist violence. This is why we focus on two parts in our article: theories of starvation, which includes an interrogation of the society that fosters it and, against this backdrop, a utopian method of interdependency to imagine things otherwise. It is only through a multi-pronged analysis on the individual and collective conditions⁵ that we can begin to imagine a different and better world that does not reproduce the violent, dis/ableist in/action of starvation.

Moving beyond the medical and social models of disability, our crip account situates disability and impairment as constructed and materialized through social (re)signification (McRuer 2006). The medical-industrial complex commands a stranglehold on the meaning of disability. Often termed the “medical model,” disability is understood as a medical problem residing in the individual body (Goodley 2017). The “social model of disability” emerged sometime later in response to these (pathologising) constructions and attitudes, and split impairment to refer to a private, individual, bodily, and functional attribute, compared with a public account of disability that emphasizes the broader social and structural factors that dis-able people (Shakespeare 2006). While the social model “enjoys currency in the academy, the activist world and spheres of policy making and professional practice” (Goodley 2017: 12), we follow Tremain’s (2001: 632) claim, influenced by Butler (1990), that “impairment has been disability all along.” In short, there is no (onto)logical distinction between impairment and disability because both are discursively and materially constructed through social (re)signification. Despite the seemingly progressive appeal of the social model, remnants of essentialism and pathology nevertheless pervade, and perhaps explain persistent negative attitudes toward the disabled bodymind (Watermeyer 2013).⁶

In what follows, we start by briefly recapitulating the starvation literature to contextualize the analysis. We note the ways in which starvation has always existed and occurs in multiple contexts, such as against self or other, individuals or groups, deliberately or inadvertently. Our contention is that these accounts are insufficient in the context of interpersonal in/action against disabled people, and particularly in relationships where care and support is relied upon but withheld. Against this backdrop, we introduce two frames – “Vulnerability and Harm by Design” and “Disability’s Deathly Status” – that account for the conditions in which these practices can (and do) occur. “Vulnerability and Harm by Design” contextualizes the ways that starvation practices against disabled people are seen as an “inevitable” outcome through broader structural and biopolitical processes. Charting the ways that disabled people are precaritised and precarious and caught within cared for/carer and dis/abled binaries, it discusses how structural violence is embedded within biopolitical frameworks that regulate and violate disabled subject positions. Far from conceiving starvation practices as unintended or accidental outcomes, we consider the ways in which these forms of structural and direct violence are instituted within the systems that are otherwise allegedly meant to protect disabled people from harms. Such circumstances, we posit provocatively, means that these forms of violence are designed to facilitate their results. In other words, the starvation of disabled people occurs not through unintended or aberrant circumstances, but instead is illustrative of the system working as it “should,” in its adherence to biopolitical frameworks.

“Disability’s Deathly Status” further notes the ways in which the category of disability is problematically connected with death, wherein disability is conceived as a negation and nonviable way of living. In accordance with prevailing (neo)liberal norms, practices, and systems, disabled people are constituted as nongrievable and, in turn, disposable. In this context, disabled people are rendered socially dead and merely, bare life (Agamben 1998), and this enables forms of slow violence to materialize through time. Slow violence, we suggest, occurs accretively and attritionally, which makes starvation practices difficult to recognize – such as in the case of Ann Marie Smith. Slow violence is seen as not a cause but an outcome for a body and life that is already constituted as nongrievable and socially dead.

Against this backdrop, the article moves from the “here and now” to the “what could be,” and speculates how these conditions can be resisted to ameliorate such forms of violence. We turn to the promise of utopia – in particular, heterotopia (Jacques 2002) – and seek to imagine crip utopias that reject independence, autonomy, self-mastery, (neo)liberalism, and productivity, and instead embrace interdependency, vulnerability, and grievability. It is through an engagement with these more generative concepts and realities that ableism and compulsory abledness can be rejected, interdependencies and accessible futures can be embraced, and generative understandings of disability can refashion prevailing attitudes and practices. While speculative and utopic, we cannot help but to think beyond the status quo when the current circumstances are clearly so insufficient, harmful, and lethal.

Theorising starvation

Starvation – the lack or absence of food that leads to death – is not new or unique but a phenomenon that has existed throughout human history (Sayers 2009). The antidote to starvation is nutritional food, but this is a product mediated by wealth and power (Sayers 2009). Even if one has (access to) food, starvation can occur regardless (Eckermann 2009). Starvation can occur deliberately against individuals and groups, such as in war, genocide, colonization, torture, or interpersonal violence (Conley and de Waal 2019). It can also occur deliberately to oneself, such as in cases of anorexia, bulimia, or extreme dieting (Eckermann 2009). It can occur inadvertently, such as lacking easy access to food or what is called food “deserts” (Walker et al. 2010), through malnutrition,⁷ as reported regarding vegan diets for children (Fortin 2019), famine, or getting oneself lost in the middle of nowhere. Deliberate on one end and inadvertent on the other, done to oneself or done to others, “starvation” describes a multitude of different types, practices, and contexts. Accounts of starvation – and starving itself – are thus fragmented and multiple.

For our purposes, it is important to differentiate between starving the self and starving the other, and particularly with an emphasis on those acts that are deliberate. Contemporary theories of self-starvation are dominated by medical accounts, particularly psychiatry, and these accounts chart a range of different causes (Wilson 2004). Within this field of scholarship, genetics, obstetric environment, and psychological distress are commonly identified as the culprits of starvation (Connan et al. 2003). These posit self-starvation as a problem that resides within the individual, and thus invokes degrees of blameworthiness and the identification of solutions that might remedy the condition (Wilson 2004). Contemporary accounts from feminist and sociological inquiry are not as pathologising. These accounts look at broader social processes, such as applying a Foucauldian lens to explore bodily self-surveillance practices (such as dieting and purging practices) in the context of various social norms, discourses, technologies, and governmentalities regarding bodily norms, practices, and healthism (Bartky 2020, Eckermann 2009).

Within the context of starving the other, however, different theories emerge, and most commonly in the contexts of war, genocide, and famine (de Waal 2018). Conley and de Waal (2018) note these “starvation crimes” contain four features. First, many different activities qualify as starvation acts that disrupt how food is ordinarily produced and accessed. Second, starvation is used as a weapon, and often in concert with other activities (such as displacement or the destruction of infrastructure). Third, acts of deprivation coincide and intersect with starvation, such as environmental stress, global economic shocks, or economic inequality. Fourth and finally, starvation is a process that takes time, and often over months or years. Each of these points suggests that starvation occurs through multiple acts, and apportioning responsibility in such contexts can be difficult when individual, social, and institutional agents and structures are (directly and indirectly) involved.

Conley and de Waal (2018) note further that starvation is used in nine different ways: 1) to kill; 2) to control; 3) to gain territorial control; 4) profiteering; 5) to deprive a population with the intention that they will yield to control; 6) to punish; 7) to exploit; 8) war provisioning/rationing; and 9) to engineer social transformation (Conley and de Waal 2018). In each of these circumstances, starvation is used as a strategy to control, regulate, violate, and exploit a group of people, and without regard for their livability or grievability. Starvation is used as a strategy to achieve a particular end, and its victims constitute collateral damage.

While some of the features identified by Conley and de Waal (2018) could be applied to the starvation of disabled people (e.g. to control or punish), there is something qualitatively different about starving someone in an intimate, interpersonal context, and particularly when it is against those who are reliant upon others for care, such as the cases mentioned earlier in this article. After all, there are no wars with disabled people, even if we seek to disavow the interdependency that is the hallmark of ableist conceptions of difference (McRuer 2006). An ethics of care is missing,⁸ and in the following section we introduce two frames – “Vulnerability and Harm by Design” and “Disability’s Deathly Status” – that seek to account for the ways in which the unjustifiable acts of starving disabled people might be theorized.

Vulnerability and harm by design

Starvation is not a one-off event; it occurs over time and is normalized and routinized in everyday practices and interactions between the perpetrator (starver) and victim (starved). Through food restriction and denial, asymmetrical power relations become practiced, embedded, and enforced through a hierarchical disabled/nondisabled and caring/cared-for relationship, which is marked by “vulnerability.” As noted by Brown (2011), “the vulnerable” is a classification that structures how people are viewed (for example, as weak, dependent, and “at risk”) and how they are subsequently treated. In this context, being labeled “vulnerable” influences how the lives of disabled people are discursively constructed and managed by state apparatuses (such as through legislation and policy), including who is determined “worthy” or in “need” of interventions and support. In this way, vulnerability is not necessarily an innate experience, but one that emerges through disabled people’s relationships and interactions with ableism, disablism, care providers, and state systems. In other words, inequalities of power create or foster vulnerability, and disabled people become objects that signify loss and need that, in turn, are accordingly “assessed” and “managed” (Titchkosky 2007).

For Butler (2004a, 2009), however, vulnerability is a shared human condition based on the fragility and mortality of the corporeal body. This ontological vulnerability is deepened by human interdependency, which highlights how humans are always embedded in and dependent on relationships with others and social systems. We are “born into a condition of radical dependency” (Butler 2009: 41), where vulnerability is not “a subjective state, but rather … a feature of our shared interdependent lives” (Butler 2009: 45). This makes everyone vulnerable to violence, but vulnerability (or precariousness) is differentially distributed and experienced, and is further influenced by uneven power relations. This results in precarity, where some populations are denigrated as “the vulnerable,” which serves to differentiate between us/them on an individual and structural basis. The idea of who are “the vulnerable” is supported and propelled through social arrangements and institutions. For Butler (2020: 77), differential notions of grievability influence “whose lives matter and whose lives do not, or whose lives are more likely to be preserved and whose lives are not.” Inequality separates those who are dehumanized (or unintelligible) from those who are not, and those lives that are grievable (worthy) and those that are ungrievable (unworthy).

In cases where disabled people are forced or need to rely on others to prepare food and to be fed, their vulnerability emerges from their precarity – they are dependent on the other to ensure their basic human needs can be met. This opens the possibility that food can be used as a tool or weapon to control, manipulate, intimidate, hurt, abuse, and to starve. The dualistic and unequal relation this involves – the cared for and the carer; the disabled and the nondisabled – makes it easy to blame an individual perpetrator for abuse, such as in the case of Ann Marie Smith’s death. Cases such as this involve direct violence, where physical and psychological violence has occurred through the deprivation and withdrawal of food, and the perpetrator needs to be held accountable. The discovery of a starved disabled body renders the acts of such direct violence visible and recognizable. If a perpetrator is identified, they can be subject to legal action and prosecution for their clearly identifiable in/actions.

The death of the starved, disabled person is a clear outcome from an act of violence whereby the unevenness of power facilitates food to be a tool of control and power, and which deepens the vulnerability of the disabled Other. However, isolating the perpetrator of such crimes from the systems that allow such actions/outcomes to occur fails to acknowledge and address the systematic violence that is taking place. That is, these asymmetrical power relations are emergent in a cared for/carer binary that extends beyond individuals and implicates social systems (Foucault 2007). In this light, the starvation of the disabled Other should be viewed as an outcome of structural violence; an indirect form of institutionalized violence that is systematically embedded and enabled. Structural violence features in social systems and institutions and is evidenced by avoidable harms, the perpetration of inequality, the unevenness of power (including how resources are distributed), and the normalization of human suffering (Galtung 1969).

Structural violence is not evidenced by one disabled person being abused and starved to death, but when there is a consistent pattern of behaviors that impact and target a specific group of people. As noted by Galtung (1969: 171):

… in a society where life expectancy is twice as high in the upper as in the lower classes, violence is exercised even if there are no concrete actors one can point to directly attacking others, as when one person kills another.

Structural violence was recognized by the judge presiding over the case of Smith’s death, as the care provider and the National Disability Insurance Scheme (NDIS)⁹ were found “culpable” (Siebert and Fedorowytsch 2020). The care provider has now been banned from operating, and an independent report by the NDIS Quality and Safety Commission has made several recommendations to improve the NDIS. This does not, however, mean changes will occur, nor will such changes address the ongoing structural crisis in disability support and care provision, which includes a shortage of personal care workers and ongoing failures of service provision (for example, 1.5 million complaints were made about the NDIS in 2021–2022; Knaus 2023). Nevertheless, the starvation of disabled people remains a national and global issue that goes beyond individuals and social welfare schemes such as the NDIS. The invisibility of structural violence enables the replication of institutional and structural harm.

This all occurs under the guise of what Foucault (2003) terms biopolitics. Biopolitics involves the delegation of power through state apparatuses and authorities that, through disciplinary techniques such as rules and regulations, determine what the life of the population should be and how it should be lived. This mix of politics and life (or ontology) enables population management by establishing (ableist) behavioral norms that control and discipline populations toward the ends desired by the state. In this way, disabled people – as individuals and a population – pose a problem to the state because they are “not normal” and thus require management. By shaping what life should be and how it should be lived, such techniques of governance determine “the right to make live and let die” (Foucault 2003: 241). Here, Foucault (2003) does not mean the act of giving or taking a person’s life, but that the hierarchies and techniques of power regulate – and take control of – people’s lives. This involves creating divisions between people – the normal (superior/desirables) and the abnormal (inferior/undesirables) – that increases “the risk of death for some people, or, quite simply, political death, expulsion, rejection, and so on” (Foucault 2003: 256). This population ordering (desirables/undesirables) enables structural violence by invisibilising services for disabled people behind procedures, regulations, and bureaucracies that determine the type, form, and level of support, and which occur behind closed doors. These procedures can give, deny, or take away.

The power to decide how to distribute resources and to which (deserved) disabled people reveals how “violence is built into the structure and shows up as unequal power and consequently unequal life chances” (Galtung 1969: 171). The subjugation of disabled people involves actuarialism that calculates the costs of disability by assessing whether they are the disabled-disabled (as opposed to the abled-disabled), and how best to deliver services to meet their perceived or real needs in the most effective and efficient way possible. This biopolitical and economic process can involve taking away or reducing services, pathologising care, and displacing care onto others. Disabled people are the problematic, biologically abnormal Other who threaten what life should be (that is, normal), and who disappear behind closed doors into the “supportive” and “safe” contexts of home and the relational ties therein; whether that be institutionalized (such as group homes) or private homes.

The biopoliticisation of disability has been previously explored by many others, though not in relation to disability, food, and starvation. As noted by Tremain (2015), the bodies and lives of disabled people have been subjected to extensive biopolitical management through technologies of power that include discourses (for example, labels such as “physically handicapped”) and institutions and interventions such as:

… asylums, income support programs, quality of life assessments, workers’ compensation benefits, special education programs, regimes of rehabilitation, parallel transit systems, prostheses, home care services, telethons, sheltered workshops, poster child campaigns, and prenatal diagnosis (Tremain 2015: 14).

Some of these measures remove or reduce the visibility of the disabled Other in society, while others facilitate improved social access and recognition. Regardless, this invisibility/visibility is only achieved by assessing the disabled person against norms that render them Other; they are “lacking” or “faulty,” and a problem that requires “regulation,” “management,” and “solutions.”

The failure to support and protect disabled people from harms such as starvation is an outcome of the structural violence that is embedded within biopolitical frameworks. That is, food has become a technique and expression of biopower through its manipulation and denial (Foucault 2007). This control over food and its provision as part of providing care controls the possibility of life, and this inequality engenders the vulnerabilities and precarities that disabled people can experience. For example, nutrition was not listed as a support category by the NDIS until October 2019—some three years after the NDIS commenced its national rollout (Comito, Coster, and Gilbertson 2023) – and will only be supported if “reasonable and necessary” and not fundable from other sources.

Deaths of disabled people from starvation may be reduced to or rendered as unintended consequences (e.g., discourses of neglect) or harms of social systems and institutions, but such perspectives fail to critique and hold to account ableist and disablist social structures that not only enable such conditions to emerge, but knowingly create and propagate them. These are not unintended harms; they are intended harms as they “are sanctioned as the necessary or permissible costs of achieving a desired objective” that are “instituted by design” (Broom et al. 2023: 53, italics in original), such as nutritional support missing from the NDIS (as per above). Broom et al. (2023: 54) note that intended harms tend to be slow to emerge, where “those who are harmed suffer from long-term mental and physical health depletion as a result of inadequate resources and state supports.” This can be seen in the starvation of the disabled Other, where there is a long decline that occurs when individuals are subjected to the rituals of starvation (often labeled as malnutrition), which slowly (and violently) progresses to death. It is a violence that involves deprivation of the resources to meet basic human needs, which manifests in “killing slowly” and avoidable deaths (Galtung and Höivik 1971).

The denial of food and nutrition evidently becomes direct violence when the harms and suffering are made visible, such as when a disabled person who has been starved to death is found. Through the processes of malnutrition and structural failures, however, the malnourished disabled person is rendered invisible, structurally and symbolically. They are hidden as governable, biopolitical ”objects” behind the closed doors of the social systems (and their home) until their deathly status becomes public as a salutary lesson to those who fear the interdependencies and consequences of relying on the other for care.

Disability’s deathly status

A particular set of social circumstances and arrangements need to exist to help account for the ways in which disabled people can be starved to death, and one consideration is disability’s deathly status. Titchkosky (2007: 109) suggests that “death and disability go together in some taken for granted fashion.”¹⁰ For Titchkosky (2007: 111), the disability/death relationship is maintained via two assumptions: that disability “is not recognized as an appropriate or viable way of being,” and that disability is recognized as nothing but limitation and negation – as “matter out of place” (Douglas 1966). It then follows that a pathologised and dehumanized body “is nothing but loss in need of annihilation” (Titchkosky 2007: 123).

Disabled people’s deathly status is maintained through the practices and discourses that situate them as having no future (Kafer 2013). Futurity refers to “an investment in and attention to the future or futures” (Kafer 2013: 28), yet disabled people are cast out of such imaginings. Halberstam (2005: 4) argues that “we create longevity as the most desirable future, applaud the pursuit of long life (under any circumstances), and pathologize modes of living that show little or no concern for longevity.” Disability, however, is understood as a limit (and often in need of cure or elimination), and as such, has no future – a limited life that is no life at all, or as bare life, at best (Agamben 1998, Butler 2004a). Disabled people tear at the fabric of society: “polluting the gene pool, or weakening the nation, or destroying a family’s quality of life, or draining public resources” (Kafer 2013: 31), as earlier noted in relation to the biopolitics of care. Disabled people are threats to the future, and a society that does not picture disability in the future renders disabled people socially dead now and in the future (Butler 2004b, Patterson 1982).

Notwithstanding the death/disability connection, there are also circumstances in which disability is considered worse than death, and we see this play out in many contexts. One example is the case of Terri Schiavo, which involved a form of state-sanctioned starvation. Schiavo collapsed one day in 1990 and entered a “persistent vegetative state.” Her husband “decided she’d rather die than be disabled” (Clare 2017: 29), and after years of legal wrangling, her feeding tube was removed and she starved to death through passive euthanasia. This example illustrates how society legitimately and legally pathologises and eliminates diseases, future existence, and disabled life itself, and actively supports and sanctions the practices of starving the disabled Other.

The association between disability and death creates a problematic set of circumstances and beliefs and goes some way to explaining the ways in which disabled people can be starved. Young (1990: 147) writes, “[f]or in confronting old or disabled bodies I confront my own death,” and that threat needs to be expunged and abjected (Kristeva 1982). Associating disabled people with death – or as ontologically dead – facilitates and bolsters a discourse that disabled people are nongrievable. Butler (2004a: xiv) notes that “[s]ome lives are grievable, and others are not,” and that grievable lives are worth sustaining and cherishing while ungrievable lives are “already lost and, hence, easy to destroy or to expose to forces of destruction” (Butler 2020: 17). Butler’s (2004a, 2009, 2020) notion of nongrievability relates to bodies that deviate from social norms, and this helps to render these populations, and disabled people specifically, socially dead. For Butler (2009: 1), social death afflicts:

… specific lives [that] cannot be apprehended as injured or lost if they are not first apprehended as living. If certain lives do not qualify as lives or are, from the start, not conceivable as lives within certain epistemological frames, then these lives are never lived nor lost in the full sense.

Social death names an ontological invalidation or deprivation (Spratt 2022). Importantly, “it is not a static condition” but a “perpetually lived contradiction” of “dying while alive” (Butler 2015: 177), which makes permissible the processes and spectacle of starvation. Influenced by Patterson’s (1982) concept, Butler (2000: 73) suggests social death refers to the “status of being a living being [that is] radically deprived of all rights that are supposed to be accorded to any and all living human beings.” Social death names the ways in which some people, and disabled people in this instance, are already “treated as dying within life” (Butler 2000: 73).

Social death often involves living a life “predicated upon the fear of literal death” (Butler 2004b: 231), and this often occurs through slow death and slow violence. Slow death describes some populations “marked out for wearing out” (Berlant 2007: 761, italics in original), and this often occurs through slow violence, which Nixon (2011: 2) describes as:

… a violence that occurs gradually and out of sight, a violence of delayed destruction that is dispersed across time and space, an attritional violence that is typically not viewed as violence at all. Violence is customarily conceived as an event or action that is immediate in time, explosive and spectacular in space, and as erupting into instant sensational visibility. We need, I believe, to engage in a different kind of violence, a violence that is neither spectacular nor instantaneous, but rather incremental and accretive, its calamitous repercussions playing out across a range of temporal scales.

While Nixon (2011) produces this definition in the context of environmental destruction and decay, we suggest there are several resonances that likewise apply to ableist and disablist violence and starvation. An emphasis on personal, direct, and immediate violence elides the “various scales and speeds at which violence takes place” (Davies 2022: 413). Starvation does not occur overnight or even over several days; it takes weeks or months to starve someone to death (Conley and de Waal 2019). Over time, acts of starvation thus accrue a familiarity/familiality, and become ritualized, perfunctory, and normalized.

As the acts, effects, and conditions involved with starving develop over time, it is difficult to identify the changes taking place. These conditions help invisibilise or camouflage the violence and entrench the behaviors so that they appear “natural” (Nixon 2011). In the case of Ann Marie Smith, paramedics at the scene complained about the disgusting state of the household when they arrived, and particularly the putrid odors. While the carer convicted of manslaughter claimed that they may have issues with their sense of smell (a claim that was dubiously received by many), they acknowledged there was nothing impeding their eyesight (Campbell 2021). Yet this violence was somehow difficult to see or recognize, because it was slow, accretive, and attritional; a routinized violence that became a lifestyle or a way of being over the years. The perpetrator created an “enclave of barbarism” (de Swaan 2001) that was difficult to recognize because of its mundanity and banality (Arendt 1963, Arendt 1978). Starving someone rests on the withdrawal of care over time, and when someone commences that journey it becomes normalized and ritualized, and becomes both a way of life and death for the perpetrator and the victim.

Imagining otherwise: building crip utopian futures

How do we work to resist the conditions in which starving disabled people can take place? This question is, of course, difficult to answer, and particularly given the collective conditions that allow such in/actions to occur. This article has documented the ways in which practices of starvation occur through a multitude of discourses, technologies, and practices, and much of this rests on reductive and dismissive attitudes toward the disabled body. Given the multiplicity of these abjectifying forces, it is likewise important that any response be collective. Starvation, after all, occurs through collective conditions, and any response must also be collective. It is our intention in this section to break from the “here and now,” to think differently, and to imagine a crip utopian future – all with the aim of resisting this violence.

It is easy to criticize the idea of utopia. Utopian thinking can be seen as escapist, speculative, impractical, unrealizable, reactionary, and even oxymoronically dystopic or crypto-utopic (Knights and Willmott 2002; Jacques 2002; Moylan 2014). Utopian thinking may doubly be subject to criticism when linked to crip futures; after all, this article has demonstrated the ways in which disabled people are cast out of our present and futures. Yet we persist in imagining a crip utopian future, and we do so because the conditions of the “here and now” push us to imagine “what could be” in a different time and place. Utopian thinking, perhaps counterintuitively, is enmeshed in the “here and now,” as it is arrayed against existing injurious practices and the imaginings of better ways of being and doing in the world (Levitas 2013). Emerging out of a hopelessness with the present, and the acknowledgment that the status quo is insufficient, utopian thinking enlivens the idea of an alternative (Levitas 2013).

Utopian thinking, then, is not unrealizable or fantastical but in fact very common to our lives; it emerges in our thoughts all the time. The issue is that utopian thought “needs to be believed” as realizable and practical to “mobilise people to political action” (Levitas 2010: 221). In this vein, as Wright (2010: 6) implores:

… [w]hat we need, then, is “real utopias”: utopian ideals that are grounded in the real potentials of humanity, utopian destinations that have accessible waystations, utopian designs of institutions that can inform our practical tasks of navigating a world of imperfect conditions for social change.

Utopias need to be viable, and Levitas (2010) suggests this viability is possible if humans can recognize their human agency, know that progress is possible, and look beyond the dystopian compulsions of the present; “[o]ur very survival depends on finding another way of living” (Levitas 2013: xii). For Levitas (2013), utopia is not ephemeral, or even a destination; rather, she suggests that utopia is a method that requires us to archeologically excavate our ableist past and its traces in the present, ontologically imagine different relationships of interdependencies and enliven an “education in desire” (Abensour 1999), and architecturally, identify some of the waystations that offer different paths for different futures.

Starvation occurs in the contexts in which people reject or elide the fact that all of us are dependent on one another. A crip future needs to recognize our radical dependency, interdependency, and grievability to each other (Butler 2020). As Butler (2020: 41) notes:

… [n]o one moves or breathes or finds food who is not supported by a world that provides an environment built for passage, that prepares and distributes food so that it makes its way to our mouths, a world that sustains the environment that makes possible air of a quality that we can breathe.

And yet we too often reject this fact and subscribe to the mirage that we are invulnerable and independent, and that it is only others who are “the vulnerable.” Our vulnerability, dependency, and interdependency need to be reconceptualized as a central feature of being human. Importantly, Kittay (1999: xii) warns that an emphasis on interdependence is often falsely conceptualized as “the mutual (often voluntary) cooperation between essentially independent persons.” This is a lie because “interdependence begins with dependence” (Kittay 1999: xii), and it may be that through this recognition we approach a shared sense of grievability with each other. We need to acknowledge that “the body is given over to others in order to persist” because “no body can sustain itself on its own” (Butler 2020: 49). Scarry (1996: 103, de-italicized text) suggests that our “human capacity to injure other people is very great precisely because our capacity to imagine other people is very small.” Yet, it may be through a reckoning/recognition of our shared interdependencies that we can forge connections and support systems that necessarily reject illusions of mastery, independence, invulnerability, ableism, and disablism.

Shared interdependency and grievability can be furnished through reimagining the ways in which disability is currently constituted. Our societies operate in a world of compulsory abledness and ableism where disabled lives are considered disposable, and the absence of disability is perceived as natural and better (Kafer 2013). Yet there is a slipperiness between ability and disability, such that neither category can be fully embodied all the time (McRuer 2006). “Temporary abledness” is a contested term in Disability Studies, but it may serve as a pedagogical waystation as it teaches us what is to come (disability) and helps humans to accept their fragility and to reject their fantasy of self-sufficiency and self-mastery. Two truisms pervade Disability Studies: we will all become disabled at some point in our lives, and disability is the one category that most of us will inhabit (McRuer 2006). Troubling the dis/abled binary, recognizing the materiality of our futures, and embracing our shared interdependence with each other may permit more intelligible and efficacious ways of being and doing.

Avowing our inherent vulnerability may appear to be a weak or empty gesture, or inefficacious in attempting to arrest cycles of violence that we see in instances of starvation. Yet we argue that it is important that such claims be made. As Butler (2004a: 43) notes, “[w]e make the claim … [for vulnerability] precisely because it is not taken for granted, precisely because it is not, in every instance, honored.” It may be that confronting something that is otherwise so easily washed (and starved) away may enable different socialities from emerging, and ones that are unencumbered by investments in pathology, invulnerability, independence, autonomy, productivity, ableism, and disablism. We can turn away from disabled people, literally, and let them starve to death, and it can be justified, excused, or reasoned by suggesting it is the disabled person’s fault – that they are not independent and autonomous, or that they did not help themselves, or that they are not normal, or that their lives are nonviable, unworthy, or ungrievable. This is what makes the claim to vulnerability so important; that we are all vulnerable, that we are all connected and inter-relational, that we have an obligation to each other, and in such contexts, that care and support requires reconceptualization from chore to pleasure.

It may be that avowing our inherent vulnerability connects us better with our mortality and dependency, and perhaps binds us to live better together. As Butler (2020: 51) observes, “[o]ur fates are, as it were, given over to one another.” Resisting disabled people’s deathly status and reductive notions of vulnerability may orient us toward alternative frameworks that invite connected, nonviolent, inter-relational and, perhaps most importantly, crip futures.

Conclusion

In this article, we have tried to establish an account of something that seems inarticulable. Different discourses can be drawn upon to explain or discuss certain phenomena, but in the context of starving the disabled Other, discourses are invisible or unintelligible. Our account should, in this context, be seen as inherently partial and preliminary, and we invite others to address the gaps or oversights we failed to imagine, and to co-develop the waystations we do imagine. Starvation practices are varied and multiple, and the particular act of starving is often sidelined as other objects of analysis – such as neglect – are privileged instead. This is not meant as a criticism, but emblematic of the fact that we are analyzing something that is so emotional, complex, difficult to isolate, and where existing accounts are not quite the right fit. Part of the confusion and difficulty is that starvation is seemingly both possible and impossible, identifiable and nonidentifiable. What we mean here is that, at face value, starvation practices deployed against the disabled Other appears pathological, but upon closer inspection, works within a broader network of social norms, practices, and systems which compel deliberate harms by design. Starvation also appears grotesque and hyper-visible, but again, its perfunctory, slow, and normalizing aspects make it difficult to identify and discuss. Starvation against the disabled Other operates through a variety of collective norms, practices, and systems, which sits uneasily with common conceptions that it might otherwise be the product of individual pathology or evil.

While we have used Smith’s circumstances to help frame the article, it would be a mistake to think that this text is about Smith, or the other stories of starvation cited. Rather, this is about larger issues that involve the commonality of disabled people dying due to starvation. These are not isolated or individual issues, but systemic and collective ones. Our framing and argument may seem confrontational and combative, but we cannot avoid this given the subject matter is so highly emotive and lethal. Ableist structures and relationships forestall thinking otherwise and for thinking about the waystations out of the dystopic present that we all must negotiate. Changing these wider social structures is critical; however, in this account of ableism, we have focused on grappling with an account of the ableist practices of starvation, as it is only through an account of phenomena that solutions become identifiable and possible.

Against the backdrop of our account, it is our contention that engagements with vulnerability, grievability, ableism, and disablism should be a central concern to Disability Studies, as it has been for Crip Studies more recently. Vulnerability, grievability, ableism, and disablism are central to the discussion that has unfolded, but they appear just as frequently in other discussions of violence, and not exclusively limited to disabled people. Vulnerability, as has been documented, is central to our lives, and it needs to become central to our theorizing and praxis. Starvation occurs through technologies of power that demarcate the vulnerable (disabled) and the “invulnerable” (nondisabled); yet, coming to grips with our shared vulnerability may orient us toward different, more careful/cared-for/caring futures yet to be experienced.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Ryan Thorneycroft

Ryan Thorneycroft is Lecturer in Criminology in the School of Social Sciences at Western Sydney University. Some of his research interests include crip theory and violence.

Peta S. Cook

Dr. Peta S. Cook is a sociologist at the University of Tasmania. Her sociological research focuses on ageing, medical science and technology, health and illness, and disability. Peta’s current research is primarily focused on topics such as ageism, elder abuse, age-friendly societies, traumatic brain injury, and ableism/disablism. For her work, Peta has received the University of Tasmania Vice Chancellor’s Award for Outstanding Community Engagement (2018) and the Australian Sociological Association’s (TASA) Sociology in Action Award (2020).

Nicole L. Asquith

Nicole L. Asquith is the Professor of Policing and Emergency Management in the School of Social Sciences in the College of Arts, Law, and Education, and is the Director of the Tasmanian Institute of Law Enforcement Studies at the University of Tasmania. With more than 25 years of work focusing on vulnerable populations and policing practices, their research interests include vulnerability, disability studies, sexualities and genders diversity, hate crime, and critical policing studies.

Notes

¹ Further information about Ann Marie Smith and her death can be sourced from Cranko’s (2022) podcast, and from the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (2021a).

² Not within scope of this article but allied to our arguments nonetheless is the work of Buiten and Cresciani (2023) on media representations and framing of disabled people’s manslaughter or homicide.

³ The article adopts the term “disabled Other” to draw attention to the ways in which one positionality (e.g. abled) is privileged while the Other (e.g. disabled) is devalued and denigrated. We also intend to problematize the privileging of one (abled) over another (disabled), and to expose instabilities and spaces of inbetweenness linking these otherwise seemingly stable categories. Our intention is to likewise catalog the maintenance of ableist normativity that produces a range of denigrated Others. See Braidotti (2003), Erevelles (2005), and Goodley (2013).

⁴ As we were completing the draft of this paper, news was published about another case of starvation (MacDonald, 2023), which on first view may appear to be a form of self-harm, but on closer investigation of the contexts, we argue that “HJ’s” slow death is illustrative of the fine line between self-harm and institutionalized starvation.

⁵ We do not pretend to know when “individual” or “collective” begins or ends.

⁶ Rehashing and debating the medical and social model of disability is beyond the scope of this article, but for important contributions, see: Goodley (2001), Hughes and Paterson (1997), and Tremain (2001).

⁷ Malnutrition relates to energy or nutritional deficiencies in a person’s diet. However, like starvation, it is also about an absence or lack of food.

⁸ See Kittay (2011).

⁹ The National Disability Insurance Scheme (NDIS) is an Australian federal government program that funds support services for disabled people. Fully operationalized in 2020, it supports more than 500,000 Australians, but has been criticized due to its inaccessibility, cost blowouts, use of independent (rather than expert) assessments, and time delays accessing the Scheme.

¹⁰ This link was most obvious during COVID-19 when disabled people were counseled to create living wills to enable the withholding of critical care, and that some medical practitioners were advocating that life-saving interventions should be reserved for those without “preexisting conditions”.