Euthanasia and physician-assisted suicide (PAS) are deeply controversial topics both within and beyond disability studies, involving issues of structural ableism, discrimination, and the right to self-determination. A common defence of the legalization of PAS, as distinct from euthanasia, rests on the right of an individual to freely choose when to end one's life. This essay makes an intervention in this debate by examining the rhetoric of media and cultural narratives that directly and indirectly address the issue of PAS and autonomous choice. Considering these narratives from a biopolitical point of view, I argue that contemporary thanatopolitical narratives draw on a particular rhetorical mode, known as "parrhesiastic rhetoric" or anti-rhetoric. This mode helps frame the testimony of extremely vulnerable individuals as a supremely credible argument in favor of the legalization of PAS. Moreover, it engenders sympathy rather than identification with these narrative subjects, ensuring that the death that is being justified remains at a distance from the reader, safely positioned as the death of others. I further argue that this narrative rhetoric supports a particular, neoliberal conception of autonomy, in which individual subjects are dynamic, rational and self-directing. In neoliberal thanatos political discourse, the choice to die is seen as fundamentally an outcome of individual, informed decision-making. Against this atomistic framework, I deploy the analyses of biopolitical disability studies to contribute to a better understanding of the historical, socio-economic, cultural, and rhetorical forces that shape contemporary debates over euthanasia and PAS.
If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a Cinematograph working brightly; then I'd go out in the back streets and main streets and bring them in, all the sick, the halt, and the maimed; I would lead them gently, and they would smile me a weary thanks; and the band would softly bubble out the 'Hallelujah Chorus'.
Death is not an evil.
We tell ourselves stories in order to live, but also in order to die. The meaning of death is no easier to establish than the meaning of life, but simply through the act of telling stories about living and dying, we try to build such meaning, as it were, from the ground up. And just as the meaning of life is influenced by our ideas about death and what death entails, the meaning of death depends upon what we take to be a good life, a worthy life, a valuable life. A good death and a good life are closely connected.
Increasingly, throughout the world, another word for 'good death' is euthanasia, and the occasion for this essay is the proliferation of liberalizing legislation on euthanasia and/or physician-assisted suicide (Verhagen and Sauer 2005; Kim, Vries, and Peteet 2016; Gerson, Lewis, and Gamondi 2016) that is currently being introduced or considered in a number of societies (Radbruch et al. 2016), particularly developed and post-industrial countries (Emanuel, Onwuteaka-Philipsen, and Urwin 2016). The question to be considered here is by what rhetoric this process is accompanied – by how its arguments are made, how its stories are told, what worldview it suggests, and, crucially, what form of subjectivity it constructs.
I write here chiefly from the point of view of biopolitical studies, which intersects with disability studies at key points (Tremain 2005; Wolfe 2013). Disability studies, of course, has a longstanding interest in how disabled people are at particular risk in matters regarding assisted suicide (Coleman 2000; Gill 1992); I extend this interest in considering how stories of disabled people seeking 'good deaths' are currently being told, and what ideological stance these stories presuppose and perpetuate. Biopolitics, defined by Lemke (2011, 1) simply as "a politics that deals with life", correspondingly provides an analytical frame for considering how contemporary notions of the "good government" of human lives intersects with death. My aim is to provide a biopolitical account of how disabled lives are used rhetorically in debates about voluntary death, and how a currently salient rhetorical trope known as "parrhesia" endows these lives a particular evidentiary weight in such debates.
In what follows, I begin by distinguishing from biopolitics the concept of thanatopolitics, a politics that deals with death, both from biopolitics and from the related concept of necropolitics. I then discuss a selection of media narratives about voluntary death with particular attention to the thanatos political rhetoric they exemplify. I proceed to analyze this rhetoric in terms of the concept of parrhesia, as well as its historical antecedents. I conclude by posing an axiological question, i.e. a question about the valuing and devaluing of lives, asking how disability studies can effectively contribute to a counter-narrative about the meaning of death – and life.
Biopolitics, necropolitics, thanatopolitics
As a modern field of inquiry, biopolitics derives in large part from the work of Foucault – particular the later works, in which he became increasingly concerned with the intersection of state power with the body, as well as with governmentality and the "conduct of conduct" i.e. how individuals are provided with the ways and means with which to understand themselves and their embodiment, which in turn naturalizes particular forms of action (Lemke 2001; Foucault and Ewald 2003; Foucault 1978).
Biopolitics is far too large and interdisciplinary a field to summarize here; suffice it to say that it is in principle concerned with every aspect of life that can in principle be understood as political, from the cellular to the biographical level. This, however, suggests the question: What about death?
One branch of biopolitics, associated particularly with the work of Achille Mbembé, is termed necropolitics, a politics of "death and terror" (Mbembé 2003, 35) and the naked, direct exercise of power, particularly state power. Nekros, in Greek, is a corpse, and necropolitics is a way for the state to turn people – in one of Mbembé's examples, people deemed terrorists – into corpses.
Thanatopolitics is a more mutable concept. It is certainly, sometimes, understood very similarly to necropolitics. It is then taken to represent the negation or antithesis of biopolitics, as a way to "meaningfully subvert biopolitical logic through death" (Murray 2008, 205). In this understanding, the politics of death, including its production and its administration, becomes a negative space, difficult to analyze or understand on its own terms.
Giorgio Agamben (1998) is perhaps the best-known exponent of this understanding of thanatopolitics, describing death as the ultimate tool available to the sovereign state in its work to dominate wholly individuals (Murray 2006, 2008; Blencowe 2010). Death is the means of fully reducing bios, human lives invested with rights, to zoë, 'bare life' or life that may be ended without repercussion. Here, death occurs as the inevitable result when human beings are stripped of their rights and treated as enemies (Nasir 2017), and thanatopolitics is entirely a matter of using force against the vulnerable.
This understanding is historically situated. In the work of Agamben and, later, Roberto Esposito (2008, 2011), thanatopolitics is understood as a throwback, as an instance of the politics of authoritarianism Here, the term is linked to Nazism and its antecedents in the logic of racism and extermination:
Once racism has been inscribed in the practices of biopolitics, it performs a double function: that of producing a separation within the biological continuum between those that need to remain alive and those, conversely, who are to be killed; and that more essential function establishing a direct relation between the two conditions, in the sense that it is precisely the deaths of the latter that enable and authorize the survival of the former (Esposito 2008, 110).
Another view of thanatopolitics
Mbembé, Agamben, and Esposito have defined a hugely productive field of inquiry, but it is a field in which certain aspects of thanatopolitics, relating to a different view of power, become obscured. I am talking now about a positively defined, productive, even collaborative thanatopolitics, in which individuals' conduct becomes aligned with state politics – a thanatopolitics that focuses on the relationship between states and citizens, those whose lives are in fact legally acknowledged as bios. This thanatopolitics is interested not only in the production of death, but in the production of meaningful deaths, of good deaths – and of a certain view of the lives that went before them.
In this understanding of thanatopolitics, the concept is not defined in opposition to biopolitics, though they by no means overlap fully. The question, rather, is how they interrelate, and how biopolitics can shift fairly subtly into thanatopolitics; that is, of the structure of their mutually constitutive enigma (Lemm 2017, 50).
Centered on life, seeking to control life, biopolitics is on one account a name for the systematic attempt to make life manageable, governable, and indeed optimized (Foucault and Ewald 2003; Lemke 2001), but usually in a liberal mode, indirectly, concerned most of all with making certain choices appear natural and appealing to individuals. Therefore, biopolitics may also be viewed as somewhat removed from life itself, at least from life incarnate, life as individual embodiment, the "singularity of human life" (Fassin 2018, 13).
In this view, biopolitics and thanatopolitics alike are profoundly historical and must be historicized in order to be understood. The thanatopolitics of authoritarian regimes must necessarily be very different from those of liberal, or neoliberal, societies. A key claim in this essay rests on this distinction. In a neoliberal state, I will argue, it is crucial that death should, with very few exceptions, be imposed from without, or coercively. It must be chosen freely, within a framework of rational decision-making.
This liberal indirectness is, in part, what saves biopolitics from the charge of death-making; it makes live and lets die (Foucault and Ewald 2003, 241). It contrasts both with earlier forms of sovereign thanatopolitics and those of modern authoritarian regimes. But a question yet to be answered is whether it is different in kind, grounded on entirely different values, or whether it differs only in degree, while sharing certain beliefs about the distinctions between worthy and unworthy lives.
Thanatopolitics and voluntary death
The tradition of "positive thanatopolitics", entwined with the notion of a good or beautiful voluntary death, has deep roots in Foucauldian biopolitics (Taylor 2015). In a 1983 interview, envisioning a radical thanatopolitical utopia which rivals the "lethal chamber as big as the Crystal Palace" imagined by D.H. Lawrence, Foucault said this:
If I won a few billion francs in the national lottery, I'd set up an institute where people who wanted to die could come and spend a weekend, a week or a month, enjoying themselves as far as possible, perhaps with the help of drugs, and then disappear, as if by obliteration. (Tierney 2006, 625)
This particular institute has not yet been established; by all accounts the Dignitas organization, located in Switzerland, maintains something more like a budget hotel than a luxurious festival venue. Nevertheless, in many countries a festive thanatos political discourse has emerged, one in which people can be lauded for wanting to die listening to the Ode to Joy (McKenzie 2018), or for throwing a party ahead of their voluntary death (The Associated Press 2016).
The rhetorical term for such discourse is "epideictic", also known as ceremonial oratory, conventionally used to bestow praise, often in connection with significant events of the life course or in the public sphere. And rhetoric is a function of the public sphere; it is a vector for the public negotiation of policy, for encounters between political subjects and those who govern them, and for private individuals to become publicly recognized. Rhetoric provides templates, scripts, readymades, and commonplaces. Thanatopolitical rhetoric serves to shape the public meaning of death, including how it becomes construed as good.
Arguably, this is where thanatopolitics distinguishes itself the most clearly from necropolitics. Mbembé (2003) deploys necropolitics as a tool for investigating the purposes for which states turn people into corpses. Thanatopolitics, by contrast, centers on death as telos, which is to say, on the possibility and production of deaths that are good and meaningful – not only across Esposito's separation of the biological continuum, but for the biopolitical subjects themselves.
The late work of Foucault prefigures these thanatos political concerns. In recent years, it is Foucault's framing of the pre-classical relationship between biopower and death that has been the more thoroughly explored. The power to decide outright who lives and who dies, for Mbembé as for Agamben (Agamben 1998), remains the "ultimate expression of sovereignty" (Mbembé 2003, 11). This makes it easy to forget that thanatos political power is also the power to inculcate, directly and indirectly, subtly and manifestly, ideas and attitudes. But in the fifth and final chapter of the History of Sexuality, vol. 1, Foucault, after stating that biopower has been transformed from the power to take life, to kill, "into a power to foster life or disallow it to the point of death"(2018, 76), then goes on to discuss "the right of death" and its "tendency to align itself with the exigencies of a life-administering power" (139). Even here, thanatopolitics cannot be identified solely with the authoritarian exercise of biopower, but is already entwined with the problems of governmentality. Rather than imposing death, thanatos political power can make death available and accessible, and can present death as an option, as a right, as a legitimate goal, through the operations of discourse.
Thanatopolitics, discourse, embodiment
In a Foucauldian frame, discourse is among the key vectors of power. It can also be understood as the signification of a social field (Weiss and Wodak 2003; Reisigl and Wodak 2009; Wodak 1989; Chouliaraki and Fairclough 2002). Such a social field cannot be conceived pre- or non-symbolically, since it is constituted in part by symbolic entities and relationships such as texts, utterances, social actions, roles, and role expectations; however, neither can it be conceived in a non-political way. Every signification of a social field is therefore politically consequential, in the sense that it shifts the perceptions, concerns, and ultimately the actions of the polis.
Power, therefore, flows through discourse, and thanatos political discourse is the signification of the governance and management of death – not as an expression of naked sovereignty but as a topic of negotiation, subject to both fear and desire. That discourse is embodied is implied by the above definition, but the implications are not necessarily spelled out. The embodiment of discourse means quite simply that meaning can be and is articulated in bodies. The description of a body, the naming of its parts, the placement of that body within a diagnostic taxonomy (which is also a political act, see Jutel (2011, 2015)), the telling of a story about that body (Frank 2010), is rarely "purely linguistic" but has a productive, generative function.
Discourse is of course not the only vector of power, but it is available for analysis in a way that other vectors are not. In other words, thanatopolitics can be observed in many ways – discourse is one avenue of access. Disability studies has known this since its inception; the discourse-analytical strain is restricted to works that explicitly use the term (Snyder and Mitchell 2000; Corker and French 1999) or even in the rich Foucauldian subfield inaugurated by Tremain (2005), but can be found in as diverse a range of examples as Oliver's critique of the wording of surveys (1990), Norden's study of narrative representation of disability in film (1994), and Titchkosky's investigation of the relationship between disability iconography and the built environment (2011). In each case, the analytical object is, in part, the process by which multiform, protean experience is rendered into symbolically stable – and prescriptive – structures. Thanatopolitical discourse, then, consists of symbolic structures where death is imbued with a particular kind of meaning; of particular interest for this essay is how it renders a meaningful death for a disabled life.
I am assuming here that thanatos political discourse, like any discourse, is structured by recurrence and by the conventionality of the mechanisms that produce meaning. Together, these provide the grounds for and the legitimation of social action, scripts that may be adhered to, trajectories that may be followed. Justifications may be explicit or implicit; they may be articulated or not, but they are always present in the relationship between an action and its context, between figure and ground. Toulmin referred to the links of justification as warrants (Toulmin 1958); they are present in the commonplaces, the loci communes, the topoi (Green-Pedersen 1984) that are the landscape-defining features of a discourse-field. Learning to recognize them is learning to recognize the discourse itself. The concept of the "right to die" is a commonplace and a topos (Reinhardt 2003; Slomkowski 1997; Aristotle 1960), since it is a place of argument and a place where argument happens. What, then, is the argument being made by the narrative of the disabled person choosing to die?
Narratives of death and freedom
Narratives have long been part of the rhetorical toolkit, for good reason; they can create grounds for identification without forcing the issue, and they can afford to be enthymematic rather than syllogistic, omitting the major premise. In the field of PAS, where arguments have for decades centered on legislative issues and have been structured around matters of general principle, narratives play a double role. They can be read simply as stories of individuals, with no necessary implication beyond their particular cases, but they can also be read as exemplars, as cases with a paradigmatic function.
A thanatopolitical utterance, spoken to a Washington Post reporter (Premack 2016) by a teenager, Jerika Bolen: «I'm going to be able to walk, I'm going to be with God, I'm going to be free.». This utterance is embedded in contemporary thanatos political discourse. In 2016, soon after her fourteenth birthday, Bolen "decided it was time to die". A Black teenager living in Wisconsin, she had spinal muscular atrophy (SMA), type 2, and her decision was presented as the logical and courageous consequence of having this condition. SMA may or may not be terminal in itself; the condition is highly heterogeneous, and estimates of life expectancy vary enormously (Russman 2007). In media narratives about Jerika Bolen, however, it became a deterministic condition against which the exercise of choice – even the choice to die – could be construed as act of liberation and empowerment.
I present this example as (proto)typical of neoliberal thanatopolitics. It foregrounds free action and explains it almost exclusively with reference to individual embodiment. In the telling, Bolen's decision was rarely framed by aspects of her life beyond her condition, that is, by socio-economics, by access, by other pathways than the one leading to death. This made it possible to align her design with conventions of American ideology. As noted by the Washington Post: "Happiness is what Jerika aims for, above all." (Premack 2016)
Bolen, in the telling of her story, is a rational, choice-making subject, even in extremis: "Logic hasn't precluded emotion, and Jen [Jerika's mother] has done a lot of crying. There have been times of anger and numb feelings." (Collar 2016). Yet despite these feelings, the choice must be made. The end is worth the means. But what, precisely, is the end? On one reading, happiness. On another, freedom: "I'm going to be free." (Premack 2016)
This narrative, centered on a sovereign decision, on individual happiness and individual freedom, appears at first to represent a profound break with earlier, authoritarian thanatopolitics. But a high degree of continuity can be discerned in the construction of death as a liberatory good. Esposito suggests as much in his discussion of the immunization paradigm, when he stresses that even the most brutal thanatos political discourse of the first half of the 20th century, aimed at the legitimation of state killings, argued that such acts made:
"[…] the victim himself the beneficiary of his own elimination. With birth constituting his illness, that is to say the fact of being born against the will of nature, the only way to save the defective person from such a subhuman condition is that of handing him over to death and thereby liberating him from an inadequate and oppressive life."
(Esposito 2008, 135)
The individual attributes that characterize a "subhuman condition" are, of course, not limited to disability. As Lemke (2011, 34) points out, in the Foucauldian tradition of biopolitical studies, it has long been recognized that modern biopolitics and modern racism are very closely intertwined. Racism is one of the crucial "fissures in the social domain that allow for the division of what is imagined in principle to be a homogeneous biological whole (for example, a population or the entire human species)" (41).
From a biopolitical perspective, in other words, it is very difficult to consider the "rightness" or "autonomy" of Bolen's decision to die without also considering the structural inequalities that leave Black, disabled people in the United States with a disproportionate degree of embodied vulnerability. Eli Clare (2018, 5) names Bolen as one of many members of a community "deemed disposable" by the dominant culture. With reference to Esposito's words, although the "inadequate and oppressive life" is not given, but is socially, economically, and politically constructed, the "subhuman condition" may still be framed as intrinsic to some individuals on the intertwined grounds of disability and race, making them especially suitable candidates for a liberatory death.
If there is continuity in thanatos political discourse, it rests in the notion of an implied beneficiary, one for whom death is not only destructive – a necropolitical transformation – but one of safeguarding and rescue. This beneficiary need not be an abstraction like the "state" or the "people"; it can very well be the dying subject herself. No, the biologically embodied Jerika Bolen will not survive, but her soul, her rational agency, her higher self – that something is being saved from pain, from unfreedom, from a life not worth living. This is a heroic narrative rather than a victim story, one in which the story's true protagonist saves herself from herself.
It is also, in many ways, a story of therapeutic intervention. According to Esposito, "[o]nly in war can one kill with a therapeutic aim in mind, namely, the vital salvation of one's own people." (136) But this view is too limited, and remains focused on the people-as-beneficiary. The only necessary requirement for construing death as a peacetime therapeutic intervention is that it not be coercive. Belgium's famously liberal approach to voluntary death coexists with the framing of euthanasia as a therapeutic intervention (Aviv 2015), begging the question on how individual autonomy intersects with professional and state-sanctioned authority to prescribe death.
Much of this question lies beyond the scope of this essay. Much work is currently being done in critical suicide studies, with some scholars even advocating that, from an anti-ableist perspective, we should be careful not to delegitimize the agency of suicidal people (Baril 2020). My concern here is not to enter into this debate, which is principally about what constitutes a legitimate desire to die, but to examine the cultural assumptions about who ought to live and who ought to die, and why.
Dignity and freedom
Since neoliberalism is an ideological praxis with global reach, the rhetoric of neoliberal thanatopolitics is not restricted to the American particularities of Jerika Bolen's story, its emphasis on happiness and freedom, its context of a profoundly unequal healthcare system. A comparable rhetoric can be found in an ostensibly very different political context, that of Norway, which can provide an example of the global expansion of neoliberal thanatopolitics. This quintessential social democracy, in which PAS (as well as euthanasia) remains illegal, where healthcare is very much socialized, may on many levels serve as a contrast to the United States. But here too, "freedom" is becoming a recurrent topos in thanatos political debates.
In Norway, the shift from a paternalistic to a neoliberal thanatos political discourse is quite recent. The legal status of assisted suicide was (temporarily) settled by a Supreme Court decision in April 2000, upholding a lower-court ruling in which the medical doctor Christian Sandsdalen was found guilty of administering euthanasia to a female patient diagnosed with multiple sclerosis. Sandsalen, who died in October 2000, became a martyr of sorts for the campaign to legalize either euthanasia or physician-assisted suicide, and had his name attached to an award given out by the Norwegian Association for Death with Dignity.
This rhetorical focus on the doctor as agent proved temporary. Two decades later, rhetorical agency has shifted from doctor to patient. In 2019, a text was published in the Norwegian newspaper Dagbladet with the title "This op-ed may be a touch controversial, because I am dead" (Staff-Poulsen 2019). The author, who was indeed deceased by the time of publication, made the central case that "[w]e are free to choose how to conduct our lives, and in the same way we ought to have the freedom to die in the way that suits us best." (Staff-Poulsen 2019) In the ensuing debate, negatives such as medical overreach and the abuse of medical power were aligned with the prolonging, rather than the ending, of life.
Anatole France famously noted that the law, in its majestic equality, forbids the rich as well as the poor to sleep under bridges. Neoliberal thanatopolitics, stopping short of this majesty, reserves the freedom to die for select forms of embodiment. While legal criteria for PAS as well as euthanasia differ across nations, states, and provinces, there is not, to my knowledge, any jurisdiction in which universal access is being seriously considered. The resources that facilitate the freedom to die are unequally distributed.
This does not mean that PAS is automatically and always an evil. Braswell (2018, 76) points out that there are "few topics more contentious among disability rights advocates than physician-assisted suicide (PAS)", going on to argue that the debate should not be a simple for-or-against, but ought to take in contextual factors that influence the praxis of PAS – for Braswell, first and foremost, the quality of available end-of-life care. I agree with this position. My aim here is to show the particular way in which the celebratory rhetoric of media and cultural narratives about voluntary death serve to de-contexualize thanatopolitical issues, bending them back towards the absolute, and to suggest that this tendency should be recognized as being particularly dangerous for disabled people, whatever one's stance on the legalization of PAS. I am also keen to show the ways in which, perversely, vulnerable embodiment is being used as the ultimate source of thanatos political legitimacy, even as the factors that exacerbate this vulnerability are being obscured.
Rhetorics of legitimation: Vulnerability and parrhesia
In the Norwegian as well as the American example, the rhetorical strategy depends critically on the vulnerability of the person seeking death. This person is in extremis, speaking from a position of ultimate risk. That is both what makes their words worth listening to and what solidifies their particular truth-claim.
Rhetoric has a word for this stance, one which has entered the Foucauldian tradition. The word is parrhesia, (Foucault 1983) which in etymological terms means "to speak everything" (gr. "all speech"): the speaker who can risk holding nothing back is the speaker who has nothing left to lose. As a liberal and emancipatory discourse, modern thanatos political rhetoric derives much of its force from this mode, which uses the ethos of the vulnerable speaker as its main form of proof.
Foucault notes that parrhesia, understood as a rhetorical stance of last resort, is intrinsically connected both to asymmetries of power and to the possibility of suicide. It was deployed by Socrates against the Athenian regime – against doxa, the communal knowledge base (Aristotle 1960), before becoming, in the Hellenistic period, the default mode of appealing to the sovereign, who manifests both doxa and the power of the state. Here, the sovereign incurs duty to listen to criticism when it comes from below, from the truly powerless, the utterly vulnerable:
The sovereign himself is not a parrhesiastes, but a touchstone of the good ruler is his ability to play the parrhesiastic game. Thus, a good king accepts everything that a genuine parrhesiastes tells him, even if it turns out to be unpleasant for him to hear criticism of his decisions. (Foucault 1983)
As such, parrhesia is a useful counter against the first part of the general injunction, in modern state biopolitics, to "make live", and a way of moving beyond the second part of the general injunction, the passive "let die" (Foucault and Ewald 2003, 240). In the Bolen story, the parrhesiastic rhetoric is a counter to the "make live" appeals from friends and family. In the Staff-Poulsen narrative, the "make live" injunction emanates from sovereign medical authority. In both these cases, power asymmetry is crucial to the appeals; rhetorical efficacy depends on the vulnerability of the speaker, on the very fact of the speakers' being in extremis. Their choices are courageous and legitimate precisely because they are difficult, painful, and tragic, running counter to social and institutional doxa.
The function of parrhesiastic rhetoric in thanatos political discourse is thus to confer a particular truth-value on the utterances of speakers who seek death. Since they speak from a position of absolute vulnerability, how can we disbelieve them? This rhetoric creates identification through the evocation of the universal vulnerability that is a fact of all biological life. Simultaneously it obscures biopolitical vulnerability, which is always enmeshed in structures and relationships (Rose 2014; Fassin 2018). In developed, late-modern societies, this vulnerability intersects crucially with the demographics of inequality, with the distribution of healthcare. Singular, existential vulnerability obscures from view all of those particular causes that belong to the social, the political, and the economic sphere.
When these conflated understandings of vulnerability are used to legitimize the choice to die, the maneuver borders on the perverse. Even as neoliberal governance promotes an ideal of "informed" and "autonomous" citizenship for patients and service users, often reframed as customers, this ideal is ever more at odds with the sociopolitical facts on the ground. Ever since the global financial crisis of 2007-08, and in many countries well before then, economic inequality and unequal vulnerability have increased in tandem.
As the rhetoric of freedom has grown ubiquitous and become conflated with the consumer's freedom of choice, actual autonomy in biopolitical matters has arguably been restricted for vulnerable groups. This applies to the neoliberal regimes of the United States and the United Kingdom, but also to the varieties of social democracy in continental Europe and Scandinavia. The late 20th century model where many entitlements were more or less automatically legitimized by embodied vulnerability, as filtered through the matrix of medical diagnosis, has been extensively undermined as states' exemption criteria for "fitness for work" have grown narrower.
The UK provides a particularly grim example of this narrowing, and the consequences have been dramatic. Since the introduction of austerity in the UK, thousands of citizens with disabilities and chronic illnesses have died while being found "fit for work" by the state (Department for Work and Pensions 2015); the resulting precarity and hardship has been extensively documented and theorized in disability studies (McRuer 2018; Goodley, Lawthom, and Runswick-Cole 2014; Mills 2017, 2020). Even in outlier countries such as Norway, where the impact of the credit crunch was more limited, concerns about increased immigration and demographic shifts mean that entitlements are increasingly tied to participation in the workforce, shifting the stigma/privilege balance towards stigmatization of non-workers.
"Life not worth living" and the safeguarding of value
There are, in mainstream politics, barely any explicit connections between precarity, austerity, and the liberalization of PAS-and-euthanasia laws – nothing like the direct mobilization of state power against the "useless eaters" or "life unworthy of life" of authoritarian thanatopolitics. It is precisely the point of neoliberal thanatopolitics to sever the connection between inequality and vulnerability, in order to render it as atomistic as possible.
Still, neoliberal thanatopolitics cannot escape its historical precedents. There is a very old connection between the political safeguarding of society, eugenics, and euthanasia, running all the way back to Plato:
These arts [medicine and jurisprudence] will care for the bodies and souls of such of your citizens as are truly well born […], but of those who are not, such as are defective in body they will suffer to die and those who are ill-natured and incurable in soul […] they will themselves put to death (Rep. 3.410a, cited in Ojakangas 2017, 30)
The reason why these measures are necessary is that something good must be preserved from something bad. The role of medical practitioners, in the Republic, was not only to cure what diseases could be cured, but to perform "amputation of the weak elements from the body, be it individual or collective" (Ojakangas 2017, 29).
In shifting rhetorical focus to and validating the free agency of the citizen, the individual is ostensibly put ahead of the body politic. The underlying value judgments, however, remain. The key phrase, echoing from the Jerika Bolen narrative, is life not worth living. There is no escaping this phrase in the history of thanatopolitics, for reasons pointed out by Esposito:
In a biopolitical lexicon turned into its opposite, a "good" birth or nonbirth cannot but correspond to a "good" death. Attention among scholars has recently been directed to the book, published in 1920 by the jurist Karl Binding and by the psychiatrist Alfred Hoche, with the title Die Freigabe der Vernichtung lebensunwerten Leben [The authorization of the destruction of life unworthy of life [sic]](2018, 76). But such a text, which seems to inaugurate a new genre, is already the result of an itinerary that ends (at least in Germany) in another work that is no less significant. I am speaking about Adolph Jost's essay Das Recht auf den Tod [The right to die], which twenty-five years earlier first introduced the concept of negativen Lebenswert, which is to say "life without value" (which was replaced with the right to end life in the case of an incurable disease". (Esposito 2008, 113–14)
At the core of Hoche and Binding's argument was an overriding concern for the well-being of the Volk, the ethnically constituted and mythically pure "people", which can, in modern times, only be safeguarded by the state. This rhetoric now appears appallingly archaic, weighed down by historical atrocity. It belongs to a different era: that of state-administered negative eugenics, of forcible sterilizations, of the ending of "three generations of imbeciles" (Lombardo 2008). We recoil because we know of the means that were deployed towards the end of a eugenic utopia; we know about the T-4 program, the proverbial dry run for the Holocaust (Benzenhöfer 1998; Gallagher 2001; Lifton 1986), and the biopolitical entanglement of disability with the topos of worthy/unworthy lives.
If this rhetoric appears outmoded and irrelevant to the study of modern thanatopolitics, it may be because of its construction of passive state subjects - of potential necropolitical victims. Neoliberal thanatos political discourse appears novel, and becomes effective, because it never forgets to frame individual subjects as autonomous, rational and self-directing. It presents death as a choice among many, but the real choice is binary – between embracing the option to choose death or by abandoning responsibility.
In narrative representation, the hero's journey is closely connected with the arguments from self-determination that are most important to the right-to-die movement (McCormick 2011). These arguments are most successful when they can be presented in the form of stories. One pioneer of individual thanatopolitical agency was Brittany Maynard, who died on November 1, 2014, in Oregon after a very public debate over the right to assisted death; her video testimony was part of the political effort that resulted in California's aid-in-dying law of 2016.
In Maynard's story, the quest for freedom also encoded an immunitary logic. Something was being protected, something was being made safe. Having made the decision to move to Oregon, to secure for herself that state's legal rights, she wrote:
Now I'm able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net. (Maynard 2014)
This represents the hard-won victory of an individual over the state, which does not easily surrender power over life and death. Even Nazi Germany attempted to contain the use of such power within the confines of legitimate, medical authority:
No step in the production of death escaped medical verification. According to the precise legal disposition of Victor Brack, head of the Second "Euthanasia" Department of the Reich Chancellery, only doctors had the right to inject phenol into the heart of victims or to open the gas valve. (Esposito 2008, 113)
By contrast, the state in its late-modern capacity will (mostly) seek to protect its citizens – as opposed to non-citizens, aliens, and terrorists, those against whom necropolitics is mobilized. But biopower ultimately remains the privilege of sovereignty. Although some countries involve para-medical professions in the decision-making process, there is no question, as yet, of removing the issue of voluntary death entirely from the realm of medicine. That would make the matter one of mere suicide. If the state is to be involved, it must be involved through its sanctioned and legitimate professions. Ultimately, then, neoliberal thanatopolitics must function through governmentality – wherein individual choice can only be enacted through a degree of alignment of sovereign and subject. This is the mode in which suicide, for some, becomes 'a normal feature of civil society' (Tierney 2010, 384).
Valuing lives: Systemic constraints
We have seen that one hinge of the thanatos political alignment between individual and society is rationality; it is the notion that the rational subject can be split from the embodied, vulnerable self. In the Netherlands, in 2019, a doctor was acquitted under the country's euthanasia laws for following the written instructions of the patient, under even more ambiguous circumstances: "[O]nce she had been admitted, the patient gave mixed signals about her death wish. Nevertheless, in close consultation with the family, the nursing home doctor performed the euthanasia." (NPPL 2019) Here, the implied beneficiary is formally recognized. Written instructions by a rational subject took precedence over the ambiguous actions and utterances of a subject who had been diagnosed with dementia, and thus lacked key capacities. This vision of rationality as the ability to make irrevocable decisions for as well as about one's future embodiment evokes, too, the logic of immunization and protection: rationality cannot protect itself from future non-existence, but it can prevent a situation in which its decisions are overruled; it can immunize itself from colonization by irrational or post-rational embodiment.
Rational argument, in turn, is grounded in valuation, in arguments and claims about what constitutes a life no longer worth living. Specific decisions emerge from individual lives, but also from general precepts about how life can and should be valued. And the history of disability, which is also the history of ableism (Campbell 2009; Nario-Redmond 2019), can be viewed as an axiological history, a history of the societal devaluation of disabled bodies (Hughes 2019).
There is much to say about such mechanisms of devaluation in late modern societies, about axiologically inflected systems of categorization in which "value" becomes something ostensibly objective and quantifiable, rendering value judgements as instances of technocratic rationality. Biopolitics has long been concerned with the policing of axiological boundaries, with the sorting of bodies into citizens and non-citizens, with the drafting and management of taxonomies of zoe and bios. Although simple dichotomies are of limited use for understanding complex social structure, we nevertheless live in a world in which embodiment and value are intimately linked through taxonomic biopolitical systems.
There is, for instance, the measure of quality-adjusted life years, QALY, which provides a technical solution to the political problem of how to allocate resources in health care (Carr-Hill 1991). The rational and objectively available measures of QALY influence political discourse, the flow of political power, and the distribution of money. It does this by suggesting, though it does not dictate, a boundary beyond which the marginal utility of extended life is insufficient. It provides, in other words, a heuristic for deciding when a life is no longer sufficiently valuable, in political-economic terms (Braithwaite et al. 2008). In part, it is a guidance tool for investment decisions, predicated on the desire for maximization of returns – though always on the impersonal, abstract level of policy. It was never intended to operate on the individual level; it simply happens to be among the many descriptive and quantitative instruments that are part of late modern biopolitics. Crucially, it provides what neoliberalism craves most: a framework for the ostensible ideology-free management of life. And in doing so it creates a perfectly rational discourse in which death can appear – always in the abstract – as a cost-saving factor, as telos.
The framework of QALY is, of course, not concerned with death as such, but with the optimization of life. It represents yet another facet of the expansion of biopolitics beyond narrow and specific instrumentalities, e.g. those delimited by the conduct of war or the erasure of specific threats to well-being. Optimization is conceived in general, utilitarian terms, as the maximization of the ratio of full life-years to population numbers. Here, many key state concerns intersect, such as public health, reproductive rights and reproductive levels, population statistics and information, and individual conduct, i.e. health behavior. The rationale for biopolitical optimization is, at this point in time, as ubiquitous as the imperative towards continuous economic growth.
These systemic factors cannot, of course, determine by themselves the form or content of thanatos political rhetoric. The point of this essay, rather, is to identify the recurrence of neoliberal topoi of freedom, rational agency, the safeguarding of value, and the potential threat of negative value in such rhetoric. The occurrence of these topoi suggest an evolving and expanding governmentality by which state's impersonal goals of optimization become subsumed and internalized by individuals, a process by which individuals' conduct is self-regulated in accordance with these goals.
Coda: Subjectivities and moral lessons
For whom is life valuable? Foucault locates the origins of biopolitics in martial concerns, in the state's need to optimize its citizenry for the conduct of war. The more recent, businesslike form of optimization of life is in a way less comprehensible, since it is often left unclear who benefits from it.
Ideally, and on the face of it, we benefit universally. We live longer, healthier lives; we escape pain and suffering. Thus optimization of the population as well as the economy has become a comprehensive goal for many if not most states, as measured in gross national product, gross national happiness, or gross national health, depending on one's preference or chosen frame. Each measure is subject to its own version of the law of diminishing marginal utility (though health is a particularly striking case since the cost of extending life can expand infinitely while human lifespans remain stubbornly finite).
In practice, however, there is no "universal subjectivity". Latter-day sovereigns' strategies for the conduct of conduct, their strategies for the management of populations, may not rely upon our understanding of all of the issues at stake, but they do rely upon our adjustment to unspoken assumptions, to a shift in the discourse. Our subjectivities are our own, except to the degree that they are not. The notion of a private value is as problematic as that of a private language; both may exist, but there is hardly any way to investigate them and make them explicit without reference to their public counterparts.
This essay has mostly been concerned with thanatos political rhetoric as it occurs in media narratives, at a site where lived unique experience meets the prefab structures of journalistic narrative. It has only briefly addressed the thanatos political narratives that emerge from art, and there is good reason to believe that such narratives exert influence on, by providing ideal-type patterns for, the journalistic or media narratives that are the primary subjects of this essay. Thanatopolitical narratives certainly abound in literature and film; they are produced for and consumed by mass audiences and highbrow readerships, and they, too, contribute to the cultural framing of "lives worth living", "lives not worth living", and "good deaths". Here, the axiological assumptions can be deployed even more cleanly than in the real world.
Perhaps the key thing to note is that such narratives, in their considerable cultural reach, find much of their appeal in precisely the same places as the media narratives. Fully constructed rather than partially emergent, they can nevertheless share their moral biases and axiological implications with media narratives. Me Before You, a novel by Jojo Moyes (2012) before it was a film by Thea Sharrock (2016), cast with beautiful actors, taking place in beautiful surroundings, focuses squarely on rationality and free agency. Its death-seeking character is rich and beautiful; he is already, apart from being a quadriplegic, entirely free. Free of concerns over the costs of healthcare, of housing, of technical aids, of living. Erect upper body clad in silk or linen, unwasted legs contoured in dark wool, he is all spirit, all will. Liberated from the demands of mimesis as well as divorced from social reality, he is an exemplar of narrative prosthesis (S. L. Snyder and Mitchell 2006, 2000), serving the functions of narrative as the embodiment of a claim, a proposition: this is how damaged lives, vulnerable lives, ought to be ended. In this way, the choice of death is itself liberated from social context, and made beautiful.
The mechanisms of anesthetization may be more clearly visible here, in this narrative of popular entertainment, than in the media narratives. But they are the same. The good death is the beautiful death, and death is beautiful for an audience. The death-seeking character, let us remember, is not the protagonist of Me Before You. The protagonist lives on. The good death is the death of others, the death for others.
In a different vein, in the style of classical continental cinema, Michael Haneke's Amour (2012) contains a similar dynamic. Here, the mode is more realistic and stark, the preconditions of a good death follow from long illness, physical and cognitive decline, and is defined and understood in the negative, explicitly, as in the final, haunting images of an empty bourgeois apartment. But there is, as there must be, both an audience and a surviving protagonist.
We should not be surprised that these thanatos political narratives are told to us, the living. After all, it is our subjectivities that can be influenced and shaped, that are still subject to change. But we should be aware how the rhetoric of neoliberal thanatopolitics depends upon this notion of alterity, and that its narrative logic of death-seeking is dependent, too, on a closure and a catharsis that can only be experienced from without.
Embodied vulnerability, viewed as difference, is a powerful narrative engine. It may be enough to motivate and propel a story, to mark out a singular protagonist. However, it is a notoriously unreliable basis for audience identification. Rather, the reverse is often the case, in literature as in cinema, vulnerability signifying isolation and disavowal. Moreover, it is the fate and function of vulnerable characters to die in order to prove a point, whether the vulnerability is embodied in the form of pathology (AIDS, cancer, consumption) or plain physiological difference.
Thanatopolitics thus links particularized embodiment to general, and generally determined, fate – for others. In its neoliberal mode, even as it denotes the 'outsourcing' of key decisions, life-and-death decisions, from states to individuals, it has a deeply problematic relationship with subjectivity. The legalization of physician-assisted suicide and euthanasia, advanced through a discourse of "free choice" or "autonomy", is linked to the split between the rational subject and the embodied subject. Death belongs to the other.
Thus states and societies can, in a Foucauldian turn of phrase, "make happen" certain thanatos political developments, while abandoning responsibility for their likely consequences. This requires both a common standard of valuation; a culturally ubiquitous standard for valuing lives, and a rhetorical space for stepping back from this valuation, for exempting oneself from it. Such standards and valuations are promoted and promulgated through rhetoric and stories; we tell each other stories in order to learn how to live, in order to learn how to die, and in order to understand when it is right for someone to die, even when that someone is us, rather than them.
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