Michel Foucault died unexpectedly 35 years ago today. To honour Foucault’s memory and the rich body of work that he bequeathed to us, I am reposting two symposiums that were previously posted at Discrimination and Disadvantage: a symposium on my Foucault and Feminist Philosophy of Disability that took place at the annual meeting of CSWIP in late October 2017 and a symposium on Melinda’s The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics that took place at the annual meeting of the CPA in late May of 2017. Foucault’s thinking plays an essential role in both books. The symposiums have been reformatted for BIOPOLITICAL PHILOSOPHY.
Commentary on Melinda Hall’s
The Bioethics of Enhancement:
Transhumanism, Disability, and Biopolitics
Shelley L. Tremain
Feminist epistemologists and philosophers of science have argued that philosophical inquiry must take account of the social contexts from which philosophical questions emerge and responses to them are generated. For example, Sandra Harding has extensively argued that information about the subjectivity and social situation of knowers can provide valuable insights into the assumptions and biases on which a given position relies (Harding 1986, 1991, 2015). Harding and other feminist philosophers have shown that any given proposition, argument, or other discursive practice is a product of the enculturation along gendered, racial, classist, and national lines of the subject (or group of subjects) who articulates it and the sociocultural milieu from which the given discursive practice emerges.
To argue in this way, Harding and a growing number of feminist (and other) philosophers assume some version of standpoint epistemology, which variously postulates that people in subordinated social positions have, by virtue of their subordinated social status, understandings of social relations that are superior to—that is, more complete and objective than—the understandings of these relations that members of privileged social groups have (see Harding 1986, 2015; Hartsock 1983; Dotson 2011, 2012).
Feminist philosophers in positions of professional, institutional, and social privilege must do more than they have thus far done to put these philosophical claims to work in practice, especially with respect to disabled philosophers and other marginalized philosophers; nevertheless, the insights that feminist philosophers, among others, have articulated about why philosophical inquiry should attend to questions about the context of discovery offer useful tools with which disabled philosophers and other marginalized philosophers can generate new epistemologies and open up new areas of philosophical investigation. These new philosophies have much to teach feminist philosophers in positions of professional, institutional, and social advantage and the philosophical community more widely.
The emerging field of philosophy of disability, which provides a framework for Melinda Hall’s new book, is a case in point. Philosophy of disability is the domain of inquiry whose practitioners interrogate (among other things) the assumptions and biases about disability on which many arguments in Euro-American philosophy rely. Indeed, many philosophers of disability advance approaches and claims that resist and run counter to the dominant conceptualization of disability persistently elaborated within bioethics, cognitive science, and mainstream political philosophy and ethics especially, according to which disability is a deficit, personal misfortune, or pathology that inevitably leads to the social and economic disadvantages that disabled people confront (Tremain 2015).
Insofar as philosophers in the Euro-American philosophical tradition have, with few exceptions, cast disability as a natural, negative, and inert state of affairs, they have largely removed the category of disability from the realm of philosophical inquiry and kept at bay philosophical debate and questioning about its epistemological, ontological, ethical, and political status.
Feminist philosophers of disability, by contrast, both use and take a critical stance toward the history of philosophy and the contemporary practice of philosophy to elaborate new ways in which to think about disability and about the current social, political, cultural, and economic position of disabled people. To do so, feminist philosophers of disability employ many of the very methods, concepts, and argumentative tools of the discipline of philosophy in which they were trained, in addition to critically evaluating these practices and tools through the political commitments, critical insights, and personal investments that shape feminist, anti-ableist, antiracist, class-conscious, and antiheterosexist theory and practice (Tremain 2013).
Hall’s book is a bold contribution to these feminist interventions that draws upon the work of other philosophers of disability and Foucault to challenge the alleged neutrality of bioethics, especially bioethical arguments with respect to enhancement. Bioethicists—most of whom are nondisabled, white, and male—generally assume that their task is to apply the universalizing and ahistorical principles of deontology, utilitarianism, or virtue ethics to situations that arise in biomedical contexts, that is, they presuppose that medical encounters provide opportunities for the expression and application of extant values. Hall argues, to the contrary, that bioethics is no mere application of these values. Rather, the very articulation and practice of these values through clinical procedures and the use of technologies, as well as the decision-making procedures that surround these practices effectively generate and configure the values themselves (see Hall 2015, 169, Hall 2016).
As Hall notes, the values that condition bioethical debates about so-called end-of-life issues, reproductive choice, rights, and justice, and resource allocation and rationing, among others, rely upon assumptions and questions about what makes life worth living and who should live, assumptions and questions about lives worth living that are at the centre of debates about enhancement. She argues (and I agree) that these assumptions and questions are fundamentally about disability—that is, they call into question disability, its meanings, and the values that surround it. Indeed, disability is the sine qua non of, and impetus for, research on enhancement, rather than merely one state of affairs appropriate for the application of the research. Insofar as disability is at the heart of research on enhancement and, furthermore, insofar as assumptions about enhancement are the driving force for bioethical discussions, disability, Hall points out, is revealed as a “major fulcrum” (Hall 2016, ix) of the field of bioethics.
Hall’s argument assumes Foucault’s conviction that power is productive, rather than merely repressive, demonstrating the prescience of Foucault’s insights and persuasively showing how critical scholarship on disability can expand our understanding of Foucault’s oeuvre. Foucault disputed the assumption of juridical conceptions that posits that power is fundamentally repressive. Furthermore, Foucault maintained that the continued preoccupation with juridical conceptions of power in which power is opposed to freedom and reigns down upon subjects from a central authority has obscured the productive capacity and subtle machinations of a form of power that began to coalesce at the end of the eighteenth century, namely, biopower. Foucault described biopower as:
the set of mechanisms through which the basic biological features of the human species became the object of a political strategy, of a general strategy of power, in other words, how, starting from the eighteenth century, modern western societies took on board the fundamental biological fact that human beings are a species. (2007, 1)
Biopower, Foucault wrote, is “what brought life and its mechanisms into the realm of explicit calculations and made knowledge-power an agent of transformation of human life” (Foucault 1978, 143). Life—its enhancement, amplification, quality, duration, continuance, and renewal—has become an urgent economic and political concern that government policy and practice address to wrest management and control of it. Thus, biopower’s management of life has entailed the inauguration of a novel set of strategic measurements, including the ratio of births to deaths, fertility of the population, the rate of reproduction, and a body of statistical knowledge and administrative cataloguing of states of health and perceived threats to it.
Hall points out that biopower—the power to make live—does not replace the earlier form of power whereby a sovereign had the right to take life. Rather, the transition from the form of power embodied in a sovereign to biopower involves a shift in emphasis. As Hall explains the relation between sovereign power—that is, the right to kill—and biopower—the power to make live—the two forms of power are layered together, rather than divided from each other in historical sequence (Hall 2016, xvii).
Notice, however, that these two forms of power seem to operate toward opposed, and even conflicting, goals: one toward life, the other as means to death. Thus, an interlocutor might doubt that these apparently conflicting forms of power can co-exist.
Hall very helpfully elucidates their co-existence by explaining that sovereign power—the right to kill—finds expression within biopower, that is, within the expansion and enhancement of life, through a “death drive” that posits a break between what must live and what must die. At the centre of biopower, she notes, is a form of racism that marks out subjects for death within the matrix of power consolidated to foster and maintain life. It is here, then, with respect to the racism of biopower—what Foucault called “racism against the abnormal”—that Hall develops her historicist analysis of the role that disability serves for enhancement literature and for the development of technologies of enhancement. As she explains, a certain construction of disabled people and other abnormals is the negative valence of the utopian vision that enhancement discourses require (Hall 2016, xvii-xviii).
Foucault (2003), in his lecture course at the Collège de France in 1975–1976, described racism against the abnormal as preoccupied not with attacking members of another race, but rather with protecting the boundaries of the race, the only race that matters, the human race embodied in its “highest” representatives (see McWhorter 2009, 139–40). For Foucault, modern racism is a set of power relations that produces effects referred to as “anti-Semitism” and “white supremacy”; however, what is at issue in modern racist regimes of power is not religion, culture, or skin colour per se, but rather, whether one is normal or abnormal. Within modern racist regimes of power, non-white skin and non-Christian religious and cultural affiliation are marked as abnormal, but so, too, are (for example) low IQ-test scores, seizures, cleft pallets, intersex, and same-gender coupling.
As Ladelle McWhorter explains in her outstanding genealogy of racism and sexual oppression, for Foucault, modern racism is neither identical with nor exhausted by attitudes and actions that harm people of colour and Jewish people, as is generally supposed. Although modern racism encompasses these phenomena, McWhorter notes, it also exceeds them (McWhorter 2009, 34).
In other contexts, I (for example, 2015) have pointed out that an understanding of biopower’s racism against the abnormal makes evident the extent to which the apparatuses of race and disability reinforce each other and contribute to each other’s constitution, showing that disability is historically, conceptually, politically, and socially inseparable from other legacies of oppression in ways that few philosophers of disability have thought before.
Hall’s book provides tools with which philosophers of disability can move forward with such an historicist, antiracist, and antiessentialist approach to disability. She points out that the racism at the heart of biopower treats as abnormal the body that it allegedly discovers through the logic of calculations and comparison, subsequently situating this abnormal body within certain strategies of power, according to the risk that it poses for the population (Hall 2016, xvii). Indeed, as Hall points out, risk is central to the construction of disability as the spectre of transhumanism’s utopian vision for a future in which life is extended and death is postponed, if not overcome. Thus, Hall proceeds to historicize the relation between risk and disability through a biopolitical history of disability and calls for enhancement.
Hall’s bio-history is rich in empirical detail and analysis, tracing connections between genetic determinism, preoccupation with heritability, and eugenic nationalism from the early twentieth-century tract How to Live—which promoted sterilization and segregation of defectives as means to strengthen America; to the development of research on endocrinology in the early 1900s; through the extermination practices of Nazi Germany during World War II; and on to the claims of Julian Savulescu and Nick Bostrom, whose research on enhancement and transhumanism animates many current bioethical discussions (Hall 2016, 57-84).
As Hall argues, current enhancement discourses are continuous with the eugenic programs of the past, rather than distinct from or unlike them. Within the current literature on enhancement and transhumanism, Hall remarks, disability is framed as risk in reductionist biological terms. “Transhumanists, like many enhancement enthusiasts across the last century,” she notes, “do not question the assumption that social problems root from natural circumstances (Hall 2016, 57). Framing disability in this way, Hall points out, undercuts sophisticated and nuanced understandings of its social and political constitution.
It is important to underscore, as Hall suggests, that risk—along with its cohorts, chance and probability—is a historical artefact that has been brought into being by techniques of statistical calculation, discourses on racial purity, and technologies of normalization—all of which were at one time novelties of biopower.
One of the foundational premises of prenatal testing and screening, for instance, is that risks in pregnancy exist in reality—that is, have an objective, prediscursive existence. In the terms of this conception of risk in pregnancy, an increasing number of variations between humans are attributed to allegedly prediscursive genetic structures, rather than unjust social, political, and economic conditions. Without the tests that make risk calculable, however, there would be no risk in pregnancy per se (see Tremain 2006). The category of risk enables transhumanists, genetic counsellors, and bioethicists (among others) to represent previously incalculable events about human beings in a form that makes them governable in certain ways, with certain techniques, for the satisfaction of certain goals.
Indeed, the technology of risk, in all its various epistemological, economic, moral, juridical, and political modalities, has become a central organizing principle of governmentality in the West. As a technology of government, risk produces the impetus to develop prenatal testing and screening; produces the options that genetic counsellors provide to prospective parents about the testing and screening; produces the decisions that prospective parents make on the basis of the options presented to them; and produces the ways that bioethicists represent these options and decisions in their writing and teaching.
These forms of risk assessment and representation of risk are no mere reporting of value-neutral objective facts, but rather incite compliance with techniques and practices that regulate, manage, and shape human conduct in the service of specific ends. For to describe the possibility of a certain future event as a risk is to ascribe negative value to the actual occurrence of such an event and to imply that certain measures ought to be taken to avoid it. Hall notes, for example, that “[p]opular discourse situates Down syndrome as a risk best avoided at any cost” (Hall 2016, 87).
As Hall remarks, many bioethicists in fact assume as a fundamental premise the idea that the avoidance of disability or disease through prenatal genetic testing and other means is self-evidently desirable. Hall points out, furthermore, that Savulescu and other bioethicists who aim to advance the idea of “procreative beneficence” go so far as to argue that it is immoral to fail to avoid disability or disease (Hall 2016, 74). She argues, however, that “[t]he logic of genetic selection relies on naturalized and materialized versions of disability that ignore their discursive, historical, and social settings” (87).
The argument of Hall’s book shows that insofar as the possible courses of action from which people may choose are not independent of the descriptions available to them under which they may act, and since the available descriptions are embedded in a cultural matrix of (among other things) institutions, practices, and power relations (Hacking 2000), critical philosophical analyses of prenatal testing and risk must consider how risk contributes to the construction of disability in pregnancy; how risk contributes to the production of techniques employed to identify and discover disability; how risk motivates the development of technologies mobilized to govern disability; how it engenders the political rationalities and programs that deploy these technologies; and how it conditions the kinds of bioethical knowledge about disability that become available (see Tremain 2006, 2015).
Recall that, as Foucault convincingly argued, power is generative, rather than prohibitive. Power relations are thus not external to bioethical knowledge and its objects and concerns, as most bioethicists seem to assume, but rather constitute the knowledge and objects that these historical artefacts affect, as well as the artefacts themselves. As Foucault explained:
Relations of power are not in a position of exteriority with respect to other types of relationships (economic processes, knowledge relationships, sexual relations), but are immanent in the latter; they are the immediate effects of the divisions, inequalities, and disequilibriums which occur in the latter, and conversely they are the internal conditions of these differentiations; relations of power are not in superstructural positions, with a role of prohibition or accompaniment; they have a directly productive role, wherever they come into play. (1978, 94)
In short, as Hall argues, drawing upon some of my work, the field of bioethics is biopolitical, a predictable product and tangible outcome of the movement of power in society, that is, the field of bioethics is a product of biopower (Tremain 2008, in Hall 2016, ix). Bioethics is a technology of modern government, a form of activity that aims to shape, guide, and affect the conduct of people in certain ways, for specific ends.
Whereas bioethics is a predictable outcome of biopower, the literature on transhumanism, Hall shows, is an unsurprising outcome of bioethics. As Hall points out, bioethicists—such as Allen Buchanan, Norman Daniels, Daniel Brock, and Matthew Liao—who are not typically identified as transhumanist nonetheless advance claims that support and promote the assumptions about disability that underlie transhumanism and arguments for enhancement. These claims are routinely transmitted to other philosophers in journal articles and conference presentations; to philosophy students in standard introductory bioethics texts; as well as to society at large through the popular press and public policy. Thus, in addition to the normative and metaethical work that Hall’s book does, I take the book to be an indictment of philosophical bioethics and an important contribution to the growing body of work that uses Foucault to critically examine the role that academic philosophy has played and continues to play in the subordination of disabled people (Tremain 2013, 2014).
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Commentary on Melinda Hall’s
The Bioethics of Enhancement:
Transhumanism, Disability, and Biopolitics
I am very happy to be talking about Melinda Hall’s book today. As Dr. Tremain has already indicated, the book is situated in the context of recent feminist philosophy of disability that aims to critique conceptions of disability that affect the way it is treated in bioethics, public policy, and philosophy more broadly. While Dr. Hall’s book is focused on the debate over human enhancement specifically, as she correctly notes this debate shares much of its presuppositions with bioethics more generally. Making this connection allows her to develop a powerful critique of the normalizing effects of bioethical discourse and its repercussions for disabled people. Philosophy as a whole continues to reward ways of framing problems that exclude disability as a matter of course; the kind of intervention that Dr. Hall makes here is therefore important and timely.
So, thanks for writing this! And thanks to Dr. Tremain for inviting me to be on this panel – I am looking forward to hearing everyone and to our discussion. I expect to learn a lot from my co-panellists!
For my part, I want to follow the thread of autonomy in Dr. Hall’s book. It is not the explicit focus of her text—it is not, after all, The Bioethics of Autonomy—but it recurs frequently. Bioethics is, of course, centred on questions of autonomy. Autonomy is one of the driving values of the Belmont Report, under the language of “respect for persons,” and this has set the parameters of much of the field. Current debates that split many disability rights advocates from other groups often hinge on the centering of autonomy— the argument about a right to medical assistance in dying being one of the most obvious. Since transhumanists often see themselves as extending Enlightenment values (e.g. Bostrom 2005), autonomy figures large here too. Dr. Hall describes the transhumanists of her book’s focus as pursuing “extended autonomy, multiplied choice, and enhanced moral acumen” (xi).
As she writes in her introduction:
The enhancement strategies supported by transhumanist visions rely on lethal misinterpretations of enhancement, risk, and disability. Enhancement enthusiasts dream of an extended and autonomous subject who is invulnerable, independent, and can choose from life plans across a maximized range of opportunity. In the transhumanist perspective, all existing persons are found wanting in these respects. But, this evaluation runs contrary to the ethical insights of feminism and disability theory; I would subvert the twinned logics of mastery and autonomy in favor of viewing human life as fundamentally vulnerable and interdependent in valuable ways. (xxi)
How we think about autonomy affects much of how we will receive the critique offered by Dr. Hall. Much of our society’s fear of disability, I think, is rooted in a fear of the loss of control over our bodies, over our minds, which means a loss of autonomy. Dr. Hall speaks up here and elsewhere in her book for the value of vulnerability (see 83; 109ff; 113), as a number of other figures have done so in the past few years, including Martha Fineman, Judith Butler, and many others.
But I worry about the opposition of autonomy and vulnerability, as though rethinking a desire for mastery and total control over the body (and the possible risks in our lives) requires jettisoning the value of being able to determine our actions and choices in accordance with our goals and commitments – and the value of determining what happens to our body.
In her 2006 article, “Disability, Constructed Vulnerability, and Socially Conscious Palliative Care,” Carol Gill writes “Because people with disabilities have had to fight tenaciously to counter stereotypes of weakness and incompetence, discussions of our vulnerability feel risky from the outset” (Gill 2006, 183). She describes how assumptions about her vulnerability within the medical setting are harmful: “The attitudes and actions surrounding me there tell me that I am too disabled to live. Although I feel robust and even fairly healthy around people who are familiar with my way of life, in the hospital I am made to feel fragile, critical” (Gill 2006). In this context, the reminder of vulnerability and interdependence is maybe misplaced; what is needed instead is a reminder of Gill’s agency.
I agree with Dr. Hall that we should encourage a view of human life that recognizes our vulnerability and interdependence. But I also think we still need some form of autonomy, in order to avoid the risk of paternalism, of having our choices made for us, of having our bodies and minds handled and manipulated without our consent. (In other words: check with me before you help me; don’t assume for me.) This risk of paternalism, is, of course, one of the reasons why mainstream bioethics champions autonomy, so I’m not really saying anything novel here.
[Note: In the midst of what is generally an argument about the importance of our vulnerability, Judith Butler notes that “essential to so many political movements is the claim of bodily integrity and self-determination. It is important to claim that our bodies are in a sense our own and that we are entitled to claim rights of autonomy over our bodies … It is difficult, if not impossible, to make these claims without recourse to autonomy.” (Butler 2004, 25).]
But I do agree that we must question the nature of that autonomy.
Dr. Hall notes the critique of the rhetoric of independence that is sometimes used in disability rights projects, noting Christine Kelly’s argument that “disability activism has been unduly influenced by physically disabled white males, who focus on goals like independent living” (109). She goes on to quote Paul Longmore expressing a preferred alternative for disability activism: “[activists] declare that they prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community” (109, my emphasis).
Self-determination is one of the ways that we can understand autonomy. We can conceive of autonomy as premised not on individual self-sufficiency but self-determination, and in this form it is important. In this form, the “self” of self-determination is one that is socially and relationally constituted, and whose values, goals and commitments occur in a social and relational context. That relationality does not mean that the self’s values, goals and commitments are less worthy of respect – rather, it enables them. Autonomy is something to cultivate within this framework. We can then ask what will contribute to cultivating ours and others’ autonomy in a range of situations—what removes barriers? what enhances self-trust? what enlarges the possibility of communication (by rethinking what communication looks like)? This will crucially involve knowledge and acceptance of our own vulnerability, our own situatedness, our own interdependence.
The idea of relational autonomy is also not new (especially within bioethics), and seems to be implied a few times in the book but is not expanded on or explored at length. Dr. Hall gestures toward relational autonomy briefly in her second chapter, on models of disability where she notes that the medical model of disability “insists that disability cannot be separated from dependency, but under this model, dependency is a product of biology, not interpersonal relationships, and is necessarily negative. this runs against feminist insights that relationships and embodiment are fundamental parts of selfhood and therefore of autonomy (e.g. Meyers 2005)” (41). The reference is to Diana Meyers’s “Decentralizing Autonomy: Five Faces of Selfhood” article (which explores not only the way in which autonomy involves relations with other people but also the ways in which our bodies exhibit autonomy separate from our conscious direction). Later on, in her chapter on negative genetic selection, she mentions the possibility of “revising notions of autonomy and dependency” (111 and 112), and also draws on Leslie Francis’s work on seeing autonomy for people with intellectual disabilities as collaborative (115-6).
Critics of independent liberal autonomy continue to posit a significant dichotomy between autonomy and vulnerability, autonomy and interdependence, rather than figure out the tricky and messy middle ground of muddling along with our attempts to shape our lives to some extent while recognizing our constraints, setbacks; to navigate the ways that others in our lives are our strength but also sometimes that we need to pull back, that friends can let us down and we still need to keep going, somehow; to live with the ways that our bodyminds propel us forward but also stumble. (Late 18th/early 19th century philosopher J.G. Fichte describes our bodies as our site of freedom in the world, and I’m drawn to that because I think the frequent messiness of our bodies beautifully aligns with the messiness of our freedom! There are also connections to Simone de Beauvoir’s Ethics of Ambiguity.)
I’m not saying that Dr. Hall should have written a treatise on relational autonomy. Dr. Hall’s book develops its argument clearly and the either-or of autonomy and vulnerability works to communicate and maintain her focus on the ways in which transhumanist discourse in specific and bioethical discourse in general are deeply harmful to folks who cannot live up to a particular independent ideal.
Also, there are possible reasons for discarding the idea. One possibility is that relational autonomy is still just autonomy, still just clinging to a problematic notion of bounded selfhood but adding a veneer of relationality to it (which would evaporate when the going got tough, and we’re suddenly back to a cold, hard, individual self-nugget). Alternately (a different possibility but maybe with the same effect), perhaps the structural issues and the stickiness of the history of eugenic thinking make it hard to follow the kind of territory suggested by relational autonomy accounts. That the pattern of normalization will persist. Maybe even relational autonomy still privileges a certain kind or level of independent, goal-directed rationality, the privileging of which serves to exclude certain kinds of bodyminds, certain kinds of messy lives, certain kinds of complex experiences under oppression. And maybe the word “autonomy” is just so laden with independent, self-subsistent connotations now that it is best discarded.
But I still wonder how a more extensive engagement with relational autonomy might fit with the arguments of Dr. Hall’s book. [One point of engagement might be with Laura Davy’s 2015 article connecting inclusive design and relational autonomy; alas, I read it only after preparing these remarks]
Take, for example, what it would mean about our attitude to risk. Dr. Hall writes that: “Autonomy is expressed by asking the question: what makes a livable life? And answering: a life without risk” (127). I love this sentence, for beautifully capturing the arid dream of the transhumanist, and also for linking transhumanist discourse with bioethical discourse more generally.
Dr. Tremain has already provided an overview of Dr. Hall’s argument about risk, and the way in which the fear of risk leads to the rejection of deviance and of disability and the insistence on a regime of medicalization, normalization, and compliance – as Hall writes, “The practice of risk management, whether theoretical or actual, redoubles risk: envisioning a utopia without risk creates risky techniques that literally kill and victimize particular persons” (119).
The attempt to avoid risk both creates its own harm and offers a cover for other damaging practices. As he writes in his 2009 book Dread, epidemiologist Philip Alcabes, argues that concerns about epidemics are largely concerns about risk, and that what we seek relief from is the world of risk (Alcabes 2009, 215). But the narratives even about actual epidemics of actual diseases are often spun in the service of xenophobia and other prejudices. In his discussion of the so-called obesity epidemic, he argues that the framing of obesity as epidemic serves to justify our pre-existing response of disgust, or to justify our fears of our own bodies (Alcabes 2009, 193-4). He reminds us that the main danger of obesity is framed in terms of elevated risk (in the shape of both adverse consequences and “risky behaviour”) – in other words, risk of obesity is risk of risk. On his analysis, there is a fear of risk which looks for objects (or diseases, or conditions) to settle on. Framing of risk is not just innocent.
This ties into Dr. Hall’s claim about what happens when we focus on risk in our understanding of human possibilities. What she points out is that the fear of risk is inevitably tied to a conception of disability. As she writes:
transhumanism views the current human body through the lens of risk, and views biotechnology through the lens of choice. The risk that the human body encounters is often conceived of as the risk of disablement, including disablement through aging, illness or accident. For these thinkers, then, and we who are under the same spell, the disabled body is uniquely linked in a false chain of equivalences to limitation, risk, and death. (137)
The desire to avoid risk is expressed as a desire for control, and is connected to the belief that if we only eat the right foods, pursue the right exercise regimen, adopt the correct technologies, we will be free—Susan Wendell describes this as the “myth of control” in her 1996 book The Rejected Body. As she writes, “Scientific medicine participates in and fosters the myth of control by focussing overwhelmingly on cures and lifesaving medical interventions, and by tending to neglect chronic illnesses, rehabilitation, pain management, and the quality of patients’ experiences, including their experiences of dying” (Wendell 1996, 94).
The myth of control, and similarly the attempt to eradicate risk through a transhumanist utopia of no disability, are both deeply harmful. Autonomy-as-independent-self-sufficiency runs right into these. Relational autonomy, however, made no promise of complete control, but still encourages us to do what we can, to cultivate what strengths we can, and to figure out what we can do, with help from others.
I want to relate this discussion as well to Eli Clare’s recent book Brilliant Imperfection: Grappling with Cure, which I read the same week as Melinda’s book. Clare’s book echoes this belief in disability as the risk that biomedicine – described as cure, the “ideology of cure” – seeks to avoid at all costs. Clare describes three permutations of cure, all linked to “elimination and erasure.” One, eradicating the disease from the individual body-mind and the world at large – including life-threatening conditions as well as non-lethal conditions deemed defects (26); two, eradicating future people (as in disability-selective abortion) (27); and three, eradicating “particular body-mind conditions,” such as the separation of conjoined twins (27-8). Describing an instance of the third, in which parents refused to give consent to a separation procedure that would lead to the death of one of the twins, Clare quotes one of the judges who ruled against the parents: “ ‘The operation would give [Rosie], even in death, bodily integrity as a human being’” – Clare notes: “Without apology, he justified the eradication of this disabled girl through an argument about personhood. In his logic, literal elimination of life becomes cure” (28).
The logic of cure depends on a perception of risk, of dependency, as a horror to be shunned. After he provides a vivid description of various ways of working interdependently together, Clare concludes “In conjuring a world where we need care to get up in the morning and go to bed at night, we picture an overwhelming dependency, a terrifying loss of privacy and dignity. We don’t pause to notice that our fears reflect not the truth but the limits of our imagination” (Clare 136).
Under the logic of cure, “un-choosing disability is celebrated and framed as a collective imperative” (Eli Clare 2017, 130). This connects to Dr. Hall’s argument that “enhancement strategies and transhumanism seem to depend on the elimination of difference—written as deviance—from the human community. Unless the deviant other is eliminated or enhanced, individual enhancement is under threat” (72).
I think there are a number of other interesting connections between the two books as well, but since this is a response to Hall’s book I will not go through them all! But one thing stands out about Clare’s book is its exploration of ambiguity, the ambiguity of cure. The logic of cure is deeply dangerous, pernicious. But that does not mean there is no room for cure. Early on in the book, Clare gives the following example:
One day in my work as an activist-writer, I’m at a podium, debunking lies about disability and cure, ranting yet again about [Christopher] Reeve. I pause, look at the audience, and see my friend P. standing at the back of the room. Her story of surviving cancer—surgery, chemo, radiation, her brush with death—flashes through me. All at once, my words feel like empty rhetoric. I have no idea what cure means to her. (Clare 13)
Cure, here, does not end up meaning treating cancer as a battle, but also doesn’t mean passively letting it “have its way with” her (Clare 13). Later on, Clare explores examples, both from his own life and those of others, of ambiguous relationships to cure. Clare explores how cure both keeps people alive and kills them, ends pain and causes suffering, is entangled in contradiction (Clare 183). I will quote again, from almost the end of the book:
I catch glimpses of a world where many kinds of body-mind difference will be valued and no one eradicated; where comfort, pain, well-being, birth, and death all exist. Cure promises us so much, but it will never give us justice. In this world reconfigured, cure may not exist, but if it does, it will be only one tool among many. In this world, our body-mind desires will spread through us, as vibrant and varied as a tallgrass prairie in midsummer. (184)
There is probably much that could be said about the ambiguity of cure, especially in the context of Dr. Hall’s book! But I am going to be running out of time and am happy to just leave that part there, so I can get back to my main theme.
I don’t think that the idea of autonomy is exactly the same as the idea of cure – maybe someday not needing cure seems quite different from not needing self-determination. But I think there are similarities between how they work. I think both can lend themselves to a dangerous ideology which is important to be wary of, but they are not reducible solely to it. Also, just as cure would be one tool among many, autonomy shouldn’t stand on its own as a value without others – the values of both care and justice – helping to ensure it does not become fetishized for its own sake.
A relational autonomy that understands us to be interdependent and vulnerable, and so which is not concerned with avoiding the risk of risk as such, might not serve the kind of ableist ends which Dr. Hall describes. I wonder rather if it would help with the kind of world she describes in her conclusion, in which political, social, and technological augmentations would make “enhancement an expression of care and interdependence, and would resemble neither positive nor negative eugenics” (139).
I’ll close by wrapping this up as a set of questions: Is autonomy/vulnerability an either/or? What can we say about self-determination while still accepting the critique of the transhumanist dream of self-sufficientindependence? What other ambiguities might be worth exploring?
Thanks for writing this book, Dr. Hall, and thanks again to Dr. Shelley Tremain for the invitation.
Alcabes, Philip. 2009. Dread: How Fear and Fantasy Have Fueled Epidemics from the Black Death to the Avian Flu. New York: Public Affairs.
Bostrom, Nick. 2005. A History of Transhumanist Thought. [Originally published in Journal of Evolution and Technology, Vol. 14 Issue 1, April 2005; reprinted in Academic Writing Across the Disciplines, eds. Michael Rectenwald & Lisa Carl (New York: Pearson Longman, 2011)] http://www.nickbostrom.com/papers/history.pdf
Butler, Judith. 2004. Precarious Life: The Powers of Mourning and Violence. London and New York: Verso.
Clare, Eli. 2017. Brilliant Imperfection: Grappling with Cure. Durham and London: Duke University Press.
Davy, Laura. 2015. Philosophical Inclusive Design: Intellectual Disability and the Limits of Individual Autonomy in Moral and Political Theory. Hypatia: A Journal of Feminist Philosophy 30(1): 133-148.
Hall, Melinda. 2016. The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics. Lanham, MD: Rowman and Littlefield.
Wendell, Susan. 1996. The Rejected Body: Feminist Philosophical Reflections on Disability. New York and London: Routledge.
Commentary on Melinda Hall’s
The Bioethics of Enhancement:
Transhumanism, Disability, and Biopolitics
Melinda Hall’s Bioethics of Enhancement is an important contribution to philosophy of disability and to ethics and political philosophy more generally. In particular, from the point of view of a political philosopher, it does a brilliant job of showing how deeply and intimately connected the discipline of bioethics and the machinery of biopower are; in fact, as the book implies and demonstrates, bioethics functions more or less as the naked edge of biopower’s advance. We should all be grateful to Professor Hall for this work.
I would like to take up just three of the many issues upon which one could remark in this very rich book. First, I want to register my reaction to the transhumanist writings that Professor Hall explicates and critiques. Second, I want to raise a methodological question about the ways in which Professor Hall uses the work of Michel Foucault. This will be a somewhat longer section and will focus on the relationship between genealogy and ethico-political advocacy. The final and lengthiest section of this presentation will take up the issues of autonomy and vulnerability in relation to personhood.
1. Transhumanist Disabilities
After I finished my 2009 book Racism and Sexual Oppression in Anglo-America, which includes an examination of the American eugenics movement through the 1950s, I read widely in the genetic enhancement literature, thinking I would eventually like to take the genealogical story into the present day. During that time, I became familiar with transhumanism and related literature and movements. After writing one article (McWhorter 2010), I abandoned the project, largely because I found the tone of that body of literature unrelentingly aggravating. Professor Hall deserves a lot of credit just for putting herself through that and staying with it long enough to do a careful analysis.
For all their utopian talk, transhumanist writers—uniformly, it seemed to me—sound like, for lack of a better word, assholes, you really would not want to spend the future with. The tone in fact matches that of our current political times, in the US at least; it is arrogant, condescending, and dismissive of genuine questions and concerns. As a result, the discourse is almost utterly insular and, to that extent at least, irrational.
There is, however, as Professor Hall’s work reminds me, an undertone. It is an undertone of extreme fear—fear of death, fear of dependence. And I would add that, at least in the case of Nick Bostrom it is an undertone of grief. When I am not too busy being aggravated by this literature, I feel very sad for these people who find so little that is precious in human life and love.
Transhumanism pre-dates the human genome project, although most of the work Professor Hall cites is much more recent. It arose at a time when geneticists imagined that the human genome contained about 100,000 genetically productive strands of DNA. In fact, as it turns out, we have less than a third of that amount. Our phenotypic traits are generated, maintained, and altered through extremely complex genetic and epigenetic interactions. Each strand of genetically active DNA may affect many, many aspects of a given phenotype, making the idea of simply swapping out or cutting and pasting together nucleotide sequences to “enhance” traits like “intelligence” or “sociability” something very close to laughable. Hall is exactly right to say that “[d]ebates over enhancement are less about available technology than potential technology deemed worthy of investment on the basis of specific goals” (4).
Transhumanists are not urging deregulation that would allow us to choose and use existing scientific knowledge to better our lives; they want to defund research that could make our lives better, given the bodies that we are, in order to fund research that would produce different kinds of bodies with different—allegedly fewer—medical needs in the future. Make no mistake, this is a eugenic project par excellence, and Hall’s work shows that contemporary bioethics as a discipline is enormously implicated in it.
2. Genealogy and Ethics
Professor Hall’s central claim is that disability functions to anchor bioethical thinking even when appearances suggest the contrary. Disability is the other, the negative, the abject against which bioethical aspirations and aims define themselves. Hall’s arguments in support of this claim are forceful and compelling.
Others on this panel are better able to engage with those arguments than I am, so I will turn now to a methodological question: How does genealogy operate in Hall’s text? And I raise this question against the background of a larger question that I struggle with in my own work: What is the relationship between genealogy and ethics? I focus my attention here on chapter 3: Rethinking Enhancement: A Genealogical Approach.
In this chapter, I argue that, in a continuation of enhancement strategies repeated throughout the twentieth century, transhumanism operates by performing biological reductions and engaging in biopolitical logic. That is, transhumanism reduces questions of social change to a discussion of altering the body and rejecting deviant bodies”. (57)
Obviously, a full treatment of this topic is impossible in one chapter, so Hall focuses on what she calls “three key historical moments: physical culture at the turn of the twentieth century, the birth of the field of endocrinology in the 1910s and 1920s, and post-Second World War rehabilitations of eugenic thinking in the 1950s” (58). In these three moments, she finds recurrent insistence on prolonging life (of the presumed healthy, by cultivating physical strengths, variously defined), equation of physical and mental health of both individuals and populations with morality, happiness, and sociability (61), and shifting accounts of the nature of good and ill health, ability and disability. As already stated, she also finds persistent biological and genetic reductionism.
There is no doubt that these themes and problematics have been ubiquitous in medical and social reformist thought throughout the twentieth and into the twenty-first century in the US and elsewhere. As Ed Cohen shows in his 2009 book A Body Worth Defending, theories of immunity, beginning with Elie Metchnikoff’s work in 1881, brought together medical and political discourses to configure the human body as a territory under perpetual attack and in constant need of defense against its own environment. Metchnikoff’s theory solidified the convergence of medicine and nationalistic politics that had been playing out in relation to the rise of cholera since mid-century. As cholera swept across Europe through mid-century, governments engaged in heated debates over how best to repel the invasion from the East, whether by closing national borders to foreign traffic or by eradicating the internal conditions for spread of the disease through enhanced policing and sanitation practices. As Cohen tells the story, Hobbes’ war of all against all moved inside bodies where microbes and human cells battled it out for control of vital resources.
Since the late nineteenth century, then, the human body has been a battleground, making it necessary for rational individuals to take on the role of military commander in a defensive war. This, undoubtedly, forms an important part of the background for the cultivation of vitality projects at the turn of the twentieth century. Illness was a result of bio-military weakness or lapse in defensive judgment. Each individual had to police his or her own corporeal territory or fall ill and expose others to illness.
Never were these projects divorced from the fear of foreign invasion at the national level, the level of the national population. Cultivation of health and anti-immigration legislation were of a piece at the beginning of the twentieth century. Sanitation projects were about cleaning up slums and dumps, but they were also always about clearing out undesirable people as well. Tenements were filthy not just because they lacked plumbing but because Irish and Jewish people lived in them. As Foucault makes clear, at the heart of biopower lies a persistent and raging racism.
Transhumanism is obviously continuous with biopolitical discourses, particularly with eugenic discourses, of the twentieth century. And it shares with those discourses a disdain for, if not a fear of, illness, weakness, dependency, and cognitive impairments. The only difference in the current iteration seems to be a shift in the technological focus. Nowadays it might be possible to edit our genomes or create androids for our intellects to inhabit, so the focus is on those possibilities rather than on sanitation, immigration restriction, and sterilization. Where I disagree with Hall, I think, is in terming those older discourses and techniques transhumanism’s “ancestors,” disparate entities more or less accidentally coming together to produce something new. There is too much continuity here to call chapter three a genealogy.
And it is precisely this continuity that really matters, I think, for Hall’s project. For, by my lights, chapter three constitutes a significant part of an ethical argument, to wit: We as a society have, allegedly, condemned eugenics; insofar as transhumanists espouse the basic tenets of eugenics, we must condemn transhumanism as well. This is certainly not the central argument of Hall’s book; much more important is her claim that bioethics takes disability (again, variously described) as its springboard and defines its practices and goals over against it. But transhumanism is a target here, and moral condemnation of it is one goal. I share Hall’s view of transhumanism and of eugenics in all its guises; I second her condemnation. My only concern is that this argumentative technique employed in chapter three not be called “genealogy.” It does not so much destabilize a concept or institution that has been taken to be inevitable or unquestionably legitimate as it discredits a discourse that disavows its own political past in an attempt to establish itself and garner resources it does not yet have.
3. Autonomy, Vulnerability, and Personhood
I want to turn now to a cluster of concepts at work in Hall’s text as well as in philosophico-ethical discourse generally. These are autonomy, vulnerability, and personhood. I will start with autonomy, which occupies, I believe, about twenty-six pages out of the book’s total of 139. It most often figures into discussion of transhumanist values, where it is variously construed as independence (59, 65, e.g.)—which is itself often construed as earning a living wage, being financially self-supporting (110)—or as having a wide range of options among which to choose at any given moment, often articulated as having an open future (83, 121, 123, e.g.). Additionally, transhumanists, bioethicists, and genetic counselors all seem to assume that exercising autonomy means choosing courses of action that minimize risk to oneself or one’s children (122, 127)—although it is not at all clear to me how exercise of autonomy can require adherence to someone else’s idea of the right or the good. Autonomy in the liberal tradition, at least in the Kantian tradition, has meant giving oneself the law, choosing to be bound by one’s own principles, even when being so bound involves great risk and makes one extremely vulnerable.
The word in bioethical debate and practice has little resemblance to that traditional meaning, which seems odd to me. How did that happen? Sometimes groups of people engaged in public discourse collectively decide that one word sounds more sophisticated than another word—much as every journalist now prefers the word “potential” to the word “possible,” despite the difference in meaning—and that ethicists have collectively decided that “autonomy” sounds more professionally sophisticated than “liberty.” “Autonomy” also sounds, perhaps, like a personal trait, whereas “liberty” clearly varies for everyone from situation to situation. At any rate, whatever the reason, this word “autonomy” does some dubious work in transhumanist and bioethical literature, as Hall forcefully points out. Everyone should “have” autonomy, the literature proclaims (despite the fact that such a thing is impossible (126)); for, autonomy is essential to living a good life. Those who cannot make use of “autonomy” (cannot, for example, understand a range of options or act on them for reasons of, shall we say, atypical embodiment) are simply and sadly unable to live good lives. Exactly what this crucial element is remains elusive.
Hall focuses the bulk of her critique on the idea of autonomy as independence, noting (along with many feminists and disability theorists) that no one is really independent. We all depend on others for crucial aspects of our well-being—emotional, physical, and economic. Human beings do not thrive in isolation and in fact most of us could not survive even a few weeks without any connections to others. Independence, therefore, is always relative. In the liberal tradition, independence was a prerequisite for full legal personhood and full participation in democratic government. It was construed as the ability to reach one’s own conclusions without coercion or fear of retribution from one’s social superiors, be they parents, husbands, or employers. One was dependent if one could not afford—literally—to offend these superiors. The only way to achieve this relatively independent status was to own enough property to be able to weather the disapproval of one’s fellows.
Virtually no one in today’s society is independent in that sense. Almost all of us are employees, and the vast majority of us are dependent not only on the continued good will of our own employers but also that of the employers of our spouses, parents, and children. Outside of that now non-existent politico-economic context, autonomy as independence has become relative to a shifting set of contexts, while usually maintaining a pretense of being context-free.
This is why autonomy can now stand in contrast to vulnerability, as it seems to do so much of the time in transhumanist discourse. In the liberal tradition, an autonomous or independent individual could take up an unpopular political stance without fear of losing his livelihood. He was not vulnerable to financial coercion. Otherwise, however, he was just as vulnerable as everyone else. He could contract cholera, get shot by an irate neighbor, or be kicked in the head by his horse, same as the next guy. Autonomy in no way cancelled out the perennial perils of the embodiment. Only death could do that.
Transhumanist dreams of total autonomy go far beyond any liberal conception of that state. Autonomy, conceived as access to a wide range of options and ability to seize upon them, becomes virtually synonymous with material invulnerability. Any physical or mental state that closes off a set of options diminishes autonomy. The logical conclusion of this line of argument is Nick Bostrom’s position: We must get rid of organic bodies altogether and upload ourselves into copper, steel, and plastic. Of course, that logical conclusion is also entirely illogical, since so many of our options for pleasure and enrichment are, precisely, bodily—the caress of a lover, the thrill of skiing down a snow-covered slope, the taste of avocadoes, the visual plunge into the luscious colors of a van Gogh painting. And it ignores the obvious vulnerabilities of copper, steel, and plastic, not to mention the enormously vulnerable and dependent moment of disembodiment and upload.
In fact, transhumanist logic is so illogical that one can only conclude, as Hall does, that what is really at issue is a fear of specific types of vulnerability and dependence—figured I would guess by the feminine, the elderly, the relatively immobile, and the intellectually impaired—in addition to a deep-seated fear of physical pain. Liberal masculinity hates to lose in any sort of competition and hates to submit to any winning “superior.” The body rejected in these texts is not merely a dependent body but a loser body—a slack body, a slow body, a body without the quick right answer, a penetrable body, a body riven by pain.
Eugenicists want winner bodies, which is why what counts as “disability” shifts around through the course of the twentieth century as developments in the economy, pharmaceutical technologies, military preparedness, and technologies of sport and entertainment alter the playing fields where competition occurs. Nowadays, armed with disposable tampons, birth control pills, and the latest laptop, even a girl body can be a winner. Imagine if we were bionic!
Losing, in this way of thinking, means submitting to a former opponent, perhaps even an enemy. It is inevitably humiliating—and feminizing. Losers are weak, degraded pussies to be ridiculed and used. (Think of Donald Trump’s derisive remarks about John McCain’s unsuccessful presidential bid.) In a world of winners and losers, there is no compassion, only respect, and respect has to be earned by defeating other people (and sometimes nonhuman animals)—in other words, by producing losers. The most important thing in the world is not to land in that camp.
It is imperative, I think, to carry this critique far beyond transhumanism. It is less important to link transhumanism with eugenics than it is to link prevailing paradigms and practices of bioethics with masculinist liberalism and to expose it as inherently deficient in regard for human well-being. (I believe, in fact, that something like this is Professor Hall’s larger project.) To this end, I would like to register a disagreement with some philosophers of disability and disability theorists, notably with Eva Kittay, whom Professor Hall cites (112-113).
Kittay has argued that we need to expand our understanding of personhood to include people who cannot control their own immediate surroundings or use words to communicate. I agree wholeheartedly that we need to respect and value such people and recognize the ways in which they experience and interact with the world around them and communicate with others. I disagree that the way to do this is to include such people in the category of personhood.
Personhood, it seems to me, is not our friend in any effort to overcome masculinist competitive liberalism. Personhood is of a piece with the networks of power that oppress and devalue much of humanity, including much of the humanity at this conference, as well as much of the rest of the living world. It is not simply, and never has been simply, the singular of “people”; it has always functioned to exclude, stigmatize, and partition off human beings and others deemed less important, less rational, less able, and less worthy of consideration.
Personhood, as John Locke says in An Essay Concerning Human Understanding, is a forensic term, a legal term (Book 2, chapter XXVII). As Roberto Esposito has shown, it came into existence in Roman law as a status, that of property holder or of individual with a legally recognized ability to hold and dispose of not only land and wealth but even other human beings. The word came into English from French after the Norman Conquest. Well into the seventeenth century, Roman law continued to influence English thinkers both indirectly—through what came to be their own legal systems, particular church law—and directly through the academic use of the Latin language and university study of Roman law.
Locke’s interest in personhood was, in fact, an interest in individual accountability before the law and ultimately before God. A person was someone who could own his (and even her) actions as an extension of his ownership of his body. A Lockean person is a proprietor, as was always the case; Locke simply extended ownership to corporeality and held everybody accountable who was not an infant, a lunatic, or an idiot. And, I hasten to add that these are Locke’s words, not mine, and that what he has in mind are people who apparently have no sense of self-identity from moment to moment. Everyone else is a property owner and is individually responsible for his or her property’s maintenance and effects. If we want to break out of values imposed by liberal capitalism, values that judge the worth of people on the basis of their so-called independence or ability, we need to critique and dismantle personhood, not enlarge its scope.
My time is almost up, so let me conclude by simply raising a set of questions that perhaps Professor Hall will find useful or interesting enough to address. First, I would like to know how she sees her analysis of transhumanism and of bioethics in relation to the context I have suggested here: liberal legalism, liberal capitalism, and competitive masculinity. Do the speculations that I have set forth here about those relationships seem on target, or would she amend them? I would also like to know how she would operationalize her critique of transhumanism politically; where might we begin to challenge its power within public discourse and within bioethical practice? These are enormous questions, no doubt too enormous to address in any depth. But perhaps they might be added to our agenda for discussion at the panel’s conclusion.
Thank you very much, Professor Hall, for this very important and provocative book. And thanks to Shelley Tremain for inviting me to participate.
I say “ethico-political” rather than one or the other because, as Stacy Alaimo (2016) asserts, as we question human exceptionalism and move deeper into materialist conceptions of human life, the distinction between ethics and politics comes to seem more a matter of scale than the name of any practical difference.
 Of course, the Trump administration and Republican Congress may be about to defund all scientific research, leaving medical research entirely in the hands of private industry. In that case, decisions will be made on the basis of predicted markets and ethics will be irrelevant anyway.
Alaimo, Stacy. 2016. Exposed: Environmental Politics and Pleasures in Posthuman Times. Minneapolis: University of Minnesota Press,
McWhorter, Ladelle. 2010. Darwin’s Invisible Hand: Feminism, Reprogenetics, and Foucault’s Analysis of Neoliberalism. Southern Journal of Philosophy 48 (September 2010): 43-63; online at http://onlinelibrary.wiley.com/doi/10.1111/sjp.2010.48.issue-s1/issuetoc.
Commentary on Melinda Hall’s
The Bioethics of Enhancement:
Transhumanism, Disability and Biopolitics
I am thrilled to have the privilege to discuss Melinda Hall’s book The Bioethics of Enhancement: Transhumanism, Disability and Biopolitics. This book strikes me as a very important critical intervention at the intersection of philosophical bioethics and disability studies—particularly for those of us engaged in disability studies who wish to move beyond the social model. Indeed, as a philosopher who engages in Foucauldian, feminist, critical disability studies—my doctoral project was a Foucauldian analysis of the science, bioethics, and biopolitics underwriting medical efforts which aim at securing a cisgender for minors with intersex conditions and gender dysphoria—I am quite sympathetic to this book’s aims and in agreement with the majority of its claims, as well as its methodology.
I agree with Hall that employing Foucauldian strategies of “genealogy and tracking the play between norm and deviance in biopolitical terms” can reveal important aspects of the historical constitution of particular bodies as normal and abnormal (Hall 2016, xix). Further, her elucidation of disability as central to the transhumanist discourse of enhancement, and of its equivalence with risk strike me as not only quite right, but also of critical importance to the fields of disability studies and bioethics writ large, and to our understanding of the relationship between those two fields.
It is also an account that deepens our understanding of the contemporary impact of Foucault’s claims regarding the necessity of a “racism against the abnormal” within the context of biopower, such that we might divide the population of living beings into those who should be “made live” and those who should be “let die”.
Finally, for those who might be unfamiliar with the particulars of transhumanist arguments for enhancement (as I was prior to reading Hall’s book), this project is also a fascinating introduction to the fairly spectacular equivalencies they make, as well as the unique future they posit—one that I highly recommend for any of you out there who have yet to read it.
Indeed, the transhumanist assumption that the possession of greater capabilities (particularly rational ones) necessarily leads to an increased opportunity range, which itself necessarily leads to greater happiness and a better life, strikes me as the kind of claim that only a fairly privileged philosopher (that is, likely a cis white man) could make. Or, at the very least, one who does not actually know any women philosophers. Because I know a lot of women philosophers who are quite keenly aware of not only the sociopolitical contingency of whatever greater rational capabilities they might have, but also that those capabilities did not necessarily translate into an increased opportunity range, and that whatever increased opportunity range that was constituted as possible for them did not necessarily result in a better life and/or greater happiness.
It occurred to me that the transhumanist project might be best characterized as “a plan for making the world happier and more just for you marginalized others by smart white men who like to situate themselves within the history of rational humanism. And, also really like science and technology. And can’t accept that the human genome project failed”. And, if you think about it that way, you’ll have quite a giggle. Or, at least I did.
One thing I found quite interesting was the way in which transhumanists situate themselves, and their enthusiasm for enhancement, with regards to evolution, both implicitly and explicitly. Transhumanists invoke evolution in a variety of different ways in their arguments. In addition to often identifying their project as “directed evolution” or “progressive evolution,” they also—for example—refer to evolution (and studies of various aspects of it) as a source of knowledge from which one can draw (presumably normative) lessons about how humans can (and should) enhance themselves for the future.
I found both transhumanist invocations of evolution in their arguments, and Hall’s lack of engagement with these invocations quite surprising. Hall quite rightly critiques transhumanists for their genetic determinism in terms of both their tendency to privilege genetic causes over all others, and the frankly ridiculously simple line they draw between genotype and phenotype. However, they are invoking this understanding of genetics specifically within the context of evolution—a (no longer solely natural) process with regards to which genetics is only one of multiple variables.
Engaging transhumanists on the issue of evolution would only strengthen Hall’s critical arguments regarding the social construction of impairment, the ideal future human they posit, and the general weakness of the transhumanists’ claims. For, while she’s quite right that they “do not question the assumption that social problems root from natural circumstances, when they can in fact be traced to social and political” circumstances, the image of natural circumstances which they appeal to in order to ground their claims is even more problematic than Hall recognizes.
Transhumanists and Evolution
Like Hall, I too assert the sociopolitical constitution of both disability and impairment—denying the latter to be an objective fact about the body, or in some way wholly natural. I follow Butler in her position that positing something as pre-discursive is itself a discourse (Butler 1990). However, I think there can be a reticence among even the most critical of critical disability theorists to press this point too firmly—one that is wholly understandable in many ways. It seems difficult to assert the constitution of impairment and justify access to care for those who seek forms of medical normalization or accommodation from bureaucratic systems that demand one be diagnosably sick. Moreover, doing so seems politically risky when access to care is such a major issue for so many of us with disabilities—particularly for those living within the context of a market-based system of healthcare administration like there is in the United States where, frankly, it is in administrators’ best interest to deny access to care by distinguishing those who should be “made live” from those who can “justifiably” be “let die.”
I am more optimistic about the ability to do both of these things—assert the constitution of impairment and justify access to care—than most. At least, within the context of a universal model of health care administration.[i] That being said, my position regarding the constitution of impairment itself (beyond issues of access to care) is a function of not only arguments like those of Hall’s and Tremain’s and Butler’s, employing genealogical methods, but of evolutionary theory itself (Hall 2016; Tremain 2001; Butler 1990). That is why I found the transhumanist invocation of and reliance on evolution (in multiple different senses) both bizarre and, to be honest, kind of amusing.
As mentioned above, enhancement enthusiasts invoke evolution in a variety of ways, both implicitly and explicitly (and for the sake of brevity, I will not discuss them all—simply those relevant to my own arguments here). Most obviously they identify their project of genetic intervention as “directed evolution,” or “progressive evolution.” In their identification of their project of genetic enhancement as such, transhumanists position evolution as a process—and importantly, a primarily genetic one—in which one teleologically guides the composition of the human genome as a developmental object. Evolution here is the modification of the human genome—what makes it progressive or directed is our specific end (which is, importantly, both the actualization of particular human capacities, and of a particular social and political world).
Beyond this, transhumanists also refer to evolution as a field of knowledge from which we can draw important lessons, both in terms of descriptive claims (presumably about that process and the history of that developmental object that is the human genome such that the kind of interventions they desire are possible), and normative ones. As Hall quite rightly points out, biologist, and coiner of the term “transhumanist,” Julian Huxley appeals to both the “full explanatory and progressive potential for evolutionary biology” in his claim that once the “[f]ull implications of evolutionary biology are grasped, eugenics will inevitably become part of the religion of the future” (Huxley, qtd in Hall 2016, 70).
Beyond meaning only that “the harnessing of that science allows us to take control of the future,” as Hall states, Huxley is, I argue, also appealing to normative claims that can be derived from that science, about both what lives should be and what we should do about them (72). This is what makes its potential progressive. The “full implications of evolutionary biology,” for Huxley, encompass both these descriptive and the normative claims, and it is this latter set that transhumanists appeal to in order to beneficently justify their interventions. This also leads to their tendency to identify what they see as “failures” of evolution to be moral ones. As James Watson asserted in 1998 (and Hall quotes), “[e]volution can be just damn cruel” (Hall 2016, 73).
Finally, Hall highlights the transhumanist tendency to emphasize humans’ unique relationship to this process or field of knowledge when motivating their project, noting Huxley’s “need to place the human uniquely within and among the evolution of species before arguing for the enhancement of human beings” (Hall 2016, 71). Indeed, as Hall writes, “[t]his uniqueness was exactly what, for Huxley, made eugenics possible and appropriate” (Hall 2016, 69). Again, we see both descriptive claims regarding evolution and normative claims issuing from it being invoked here, and it is both of these claims that underwrite Huxley’s position that “evolutionary progress can be taken up as a tool, and should be taken up as a responsibility to the species” (70).
Evolution, it seems, has made humans special, and so humans must embrace the unique responsibility that comes with being special and take up evolution as a tool to make both individuals and societies better. It’s all kinda old school, “white man’s burden,” “civilizing the savages” nonsense to be quite honest. But, instead of God, or country, or straight up ethnocentrism, we’ve made poor old evolution the scapegoat. Don’t feel bad for it though—as I will explain, evolution just ain’t that kind of thing. It has no feelings. It is not cruel.
I will grant that there do seem to be some ways in which humans are indeed unique among species with regards to evolution—and one of them is with regards to those descriptive claims about it. We do seem to know the most about evolution relative to other species. However, I suspect that someone like Dorothy Roberts—for example—might argue that the mere existence of arguments claiming that reproductive and genetic interventions of the type transhumanists propose will not result in greater disparities in the world doesn’t seem to indicate that we humans are in fact “uniquely situated to draw lessons from history and evolution” as the transhumanist claims (Roberts 1997; Hall 2016, 7).
Evolution as a field of knowledge made up of descriptive claims regarding concepts and processes such as natural selection, genetic drift, and Darwinian fitness, simply cannot generate the kind of normative claims that the transhumanist assumes. This is a basic naturalistic fallacy—and one used to justify commitment to a grossly ableist vision of the future (in the kind of way that eugenicists are wont to do). Evolution theory or concepts simply cannot do this kind of work for you.
Now, there is, indeed, an evolutionary account of impairment (or rather, “genetic defect”) that transhumanists could theoretically appeal to, and one could object to my position and say “But, couldn’t we generate normative appeals from that? If the evolutionary definition says a trait is a genetic defect, and we have the power to eliminate that, then shouldn’t we do that?”
Even if I accept the descriptive to normative leap here—and I will for the sake of argument, why not?—that is definitely not what transhumanists are doing here, so we cannot defend them on such grounds. For transhumanists, to the extent that we are all wanting, we all are impaired and thus, we are all in need of curing—this is part of why the therapy/enhancement distinction does not hold for them. Further, the evolutionary account of genetic defect takes a very particular form and is very conservative. Indeed, the majority of bodily states that folks (who are not critical disability scholars) uncontroversially accept to be pathologies, such as deafness or blindness, would not count as genetic defects according to an evolutionary definition.
Even though the evolutionary account of genetic defect cannot be used to defend the transhumanist against my challenge regarding his derivation of normative claims, I nonetheless want to spend a bit of time discussing it. The fact that transhumanists consider us all to be impaired, along with the normative claims they derive from descriptive knowledge produced about evolution are themselves fairly strong bits of evidence for impairment’s constitution—something that stands in direct tension with their genetic determinism. However, a brief exploration of the evolutionary account of genetic defect will serve to provide further evidence for the social construction of impairment, and will bring me to my final point—that transhumanists’ identification of their project as directed or progressive evolution misunderstands what evolution is as a process. It just isn’t the kind of thing they think it is.
Evolution and Genetic Defect
Evolutionary definitions of pathology or genetic defect are made at the level of the population, and are a function of Darwinian fitness, a technical term referring to the “production of the young who will partake in the next generation’s reproduction” that is mathematically represented by the “product of fertility and probability of survival” (Roughgarden 2004,106). In order for a genetically inherited trait to be a genetic defect, it must meet two very specific criteria: 1) “the trait must be extremely rare” as a result of being continuously opposed by natural selection and 2) the trait must be deleterious or non-advantageous under every condition (not merely the current conditions) (Roughgarden 2004, 281).
The frequency of a trait in a population, known as its mutation-selection equilibrium, is, as evolutionary biologist Joan Roughgarden writes, “set by a balance between two rates: the rate of formation by mutation and the rate of elimination by natural selection” (281). Thus those traits that are lethal (and similarly result in a 100% loss of Darwinian fitness) occur only as frequently as the rate of mutation itself (1/1,000,000), because such traits are necessarily always selected against (Roughgarden, 2009, pp. 281-282). For non-lethal traits, the frequency of the trait in the population increases as the effect of the trait on Darwinian fitness decreases. For example, a trait that results in a 10% loss in Darwinian fitness will have a frequency of 1/100,000 while one resulting in a 5% loss in Darwinian fitness will have a frequency of 1/50,000, and so on (282). Roughgarden herself takes this latter frequency, 1/50,000 as “threshold rarity at which a trait can be considered a defect,” writing, “[e]ven if a trait isn’t particularly harmful, and a 5 percent loss of fitness wouldn’t be all that easy to detect, this degree of disadvantage, if sustained through all generations everywhere, would eventually lead to the trait becoming as rare as 1 in 50,000” (282). Roughgarden argues that “regardless of medical opinion,” if a trait is more frequent in the population than this, it cannot be a genetic defect:
If the trait is, say, ten times more common than the cutoff value (1 in 50,000) and has been traditionally considered a “disease,” then either the trait’s overall disadvantage has been overestimated to begin with, or else the trait has some possibly unknown advantages in addition to the known disadvantages. (282-283)
Again, this evolutionary definition of genetic defect doesn’t really matter for the transhumanist who takes us all to be impaired. Further, it actually doesn’t really matter for us humans in general, as we uniquely interfere with our environment—one of the other ways I will grant that we humans seem to be unique among the species—such that the selection against particular traits we experience is necessarily both social and natural (and often more of the former and less of the latter). Traits that once might have resulted in something close to 100% loss of Darwinian fitness, now no longer do so because of certain technological advances.
Take, for example, Type 1 diabetes (and let’s assume it arises in the kind of simplistic, determinist way the transhumanist imagines). Many Type 1 diabetics live long, reproductively bountiful lives thanks to social-political and technological interventions. While we as a society might all still want to say that Type 1 diabetes is a pathology, insofar as we think people with diabetes should gain access to interventions which allow them to live and reproduce as they want to—things like glucose monitors and testing strips, and insulin, and competent endocrine care—this is not because they would have a genetic defect from the perspective of evolutionary theory if we didn’t give them these things. It’s because we think their lives have value and that they should live and have the same opportunities everyone else does, notwithstanding their Type 1 diabetes.[ii] Further, because of these sociopolitical and technological interventions, Type 1 diabetes is no longer a genetic defect from an evolutionary perspective. Our interventions have changed environmental selection pressure upon it—which is necessarily, inextricably, sociopolitical and natural—such that its presence no longer reduces Darwinian fitness in the same way.
The transhumanist might rebut that they are looking towards something much grander than our ability to simply live and reproduce—that they are looking towards the far nobler future full of infinite choices and unending pleasures. However this response reveals their deep misunderstanding of evolution itself. Evolution is a process (well, really as a set of processes) via which variation (in multiple dimensions from genetic, behavioral, physiological etc) dynamically engages with the environment—an engagement so intimate that variation and the environment cannot be easily untangled. The fitness of a species in terms of the value of its capacities is, necessarily, environment relative, dependent on what might be selecting against it. And as the species which most interferes with its environment, this is particularly so for us. This even further calls into question the transhumanist prioritization of genetic factors over sociopolitical or environmental. It also calls into question their understanding of their project as a kind of evolution.
Along with grossly oversimplifying the role of the genes in the development of variation writ large, the transhumanist project misunderstands the relationship between this variation and the environment, presuming a unidirectional impact of the organism on the environment (and in a fascinatingly oversimplified picture wherein better person = better world, as though the world doesn’t condition what counts as better). They assume humans have a control over the world that is breathtaking—or, at least that the posthuman will—though again, control over the world and choice itself will be dependent on the environment of that future world, and what constitutes control and choice within it. This is why even though evolution as a process is dynamic, evolution as a set of descriptive claims about that process for a certain species is necessarily always kind of backward looking and not future oriented. You can’t actually know future conditions, and so you can’t know what the interplay between traits and environment will be like and thus, what traits might be best to have.
Thus, what the transhumanist is proposing is not “directed” or “progressive” evolution, but rather genetic modification as a form of evolutionary speculation at best. Which is, itself, quite risky—because it might turn out that the traits that serve us best in the future are not greater intelligence or the ability to go about our work with “zest,” but thickened skins to protect us from mosquitos carrying an increasing number of infectious diseases as a result of shifts in migration patterns resulting from climate change. Or, perhaps, generally lower water requirements, or a higher tolerance for heat.
This unknowability of the future is one of the things that makes life risky—because Hall is quite right, life is risky, and necessarily so. It is messy, and contingent, and while this risk does have something to do with our bodies and our genes, it does not inhere in us essentially—it is not a simple fact about the body or about certain bodies. It is the dynamic relation between the body, and environment—in all of their social, political, material, natural, discursive, and economic dimensions, that suffuses life with risk. And this riskiness is not with regards to death or disability, but with regards to life chances—because death and disability in some form or another are not really risks, but certainties. If you live, you will die, and before that, your abilities—be they physical, cognitive, or social—will vary. Given this, I’d like to conclude with a few questions regarding life and risk.
How might we foreground the inherent riskiness of life beyond theories of relational autonomy, or care, and is it possible to do so in a way that embraces risk rather than defaulting towards its mitigation? Are there ways of thinking of life as risky that disperses responsibility for that risk around (to society collectively, or to individual others) and off of certain individual bodies or forms of life? Or might it be about mitigating risk, but at the level of the collective rather than the individual—such that certain groups do not have to bear its burden alone—even if it engages another kind of population level biopolitics (and I will admit, lurking in the background here are my concerns as a Canadian bioethicist who has recently moved to the US regarding current debates about health insurance in this context—debates which are, in part, quite explicitly about which individuals should have to shoulder the risks posed by the bodies of certain others).
[i] Given that within a market-based system of health care administration (such as that seen in the United States), denial of care is necessarily incentivized in order to increase profit margins, it feels important for me to explicitly acknowledge my sympathy to these concerns within that context.
[ii] This is part of why I think pathologies are actually best thought of as socio-politically constituted entities that function primarily at the level of bureaucracy in order to justify the administration or withhold of various forms of normalizing intervention, supports, or accommodations. But, I digress.
Butler, Judith. 1990. Gender Trouble: Feminism and the Subversion of Identity. New York, NY: Routledge.
Hall, Melinda, C. 2016. The Bioethics of Enhancement: Transhumanism, Disability and Biopolitics. Lexington: Lexington Books.
Roberts, Dorothy. 1997. Killing the Black Body: Race, Reproduction, and the Meaning of Liberty. New York: Random House/Pantheon.
Roughgarden, Joan. 2004. Evolution’s Rainbow: Diversity, Gender and Sexuality in Nature and People. Berkeley, CA: University of California Press.
Tremain, Shelley. 2001. On the Government of Disability. Social Theory and Practice 27 (4): 617-636.
Response to Commentaries on My Book
The Bioethics of Enhancement:
Transhumanism, Disability and Biopolitics
I am honored by this priceless opportunity to hear responses to my work from colleagues I admire both professionally and personally. I cannot say enough to thank Shelley Tremain, who organized this panel, or the panelists, Ladelle McWhorter, Jane Dryden, Catherine Clune-Taylor, and Shelley, who spent time reading and responding to my book. I greatly appreciate the generous readings and insights you offer and the extensive notes you made on my work, including suggested pathways for future thinking.
I want to frame my response to these wonderful commentaries with a brief re-description of what I take to be the primary, overlapping claims in The Bioethics of Enhancement, which I can now offer at some distance. The book primarily focuses on transhumanists, the human enhancement enthusiasts I critique. But, I claim that transhumanist arguments are continuous with, not aberrations of, arguments elsewhere in bioethics and so can highlight the biopolitical assumptions at the heart of it—that is, that disability is connected to risk is connected to death.
Transhumanism is often taken as a fringe discourse which is by turns amusing, as Professor Clune-Taylor points out, and unrelentingly aggravating, as Professor McWhorter points out. When telling people about my research on transhumanism the response was most typically some version of: Really? Why? Or, how can you stand it? I don’t know how to answer this second question, but I can answer the first.
One might contend, if I mean to seriously critique arguments for enhancement, that I should consider the best and most careful arguments for enhancement, not the most enthusiastic. Yet, as I write in my introduction, pursuing only the best arguments counts as a sound policy only if one assumes that the best arguments are the ones with the most influence in social and political registers (Hall xiii-xiv).
Unfortunately for us, the most influential and ideologically central arguments are not necessarily the best arguments. Assumptions made by transhumanists Nick Bostrom and Julian Savulescu and those in their academic circles may be provocative—even specifically calibrated for a strong reaction—but they have strong purchase in academic circles and both Bostrom and Savulescu are cited widely.
Savulescu urges potential parents to create the best child possible, which most often means choosing not to produce particular children whose embodiment is thought to pose risk and vulnerability (2001). For Savulescu, this is a human enhancement strategy, although notice that no one in particular is enhanced. Savulescu, writing with Ingmar Persson, urges the practice of human enhancement to avoid catastrophic effects such as species extinction (2012). Prenatal testing and genetic selection are the technologies of choice among transhumanists for creating the best child (Savulescu 2001). They are also considered a matter of obvious necessity to many everyday folks, or even—among those who are anti-choice–the only permissible reason to have an abortion.
Further, viewpoints expressed by Bostrom and Savulescu are shared by most academic and working medical and genetics professionals. Consider the transplant board who refuses a new organ to a patient with a disability (Cohen 2013) or the genetics counselor who conflates genetic markers for Down syndrome with a fifty-percent chance of significantly impaired cognitive ability and, therefore—so it is implied—a life not worth living (Elkins and Brown 1995, 18 cited in Carlson 2002, 209).
Study after study demonstrates that medical professionals do not believe disabled lives are worth living and would terminate an otherwise wanted pregnancy on the basis of disability. The pressure of biopolitics rests here upon the “species body” and the enhancement of that body, in a dynamic framework of contamination and exclusion that poses potential parents as risk-managers. These subjects at risk of disability are asked to act against the appearance of risky disabled subjects.
These dynamics and more are why I find it urgent to deal with transhumanist thinking, although indeed transhumanists arguments are not good ones. They are unavoidably based in genetic determinism and trade in narrow and inaccurate views of disability bounded by the medical model. Further, transhumanists do not even demonstrate understanding of the evolution they so wish to direct, as Professor Clune-Taylor thoroughly shows.
To analyze transhumanism’s enhancement enthusiasm and situate it in larger contexts, I show that the discipline of bioethics and the practice of medicine is biopolitical. In other words, the assumptions, fundamental claims, and discursive constructions appearing within the field of bioethics operate using the logic of biopolitics.
Professor Tremain has already given a fantastic description of Foucault’s biopolitical analysis and paints my use of his work in the best possible light. Understanding bioethics as biopolitics reveals features of the discipline otherwise obscured from view, including the lethal stakes of the discourse, the context of particular actions, specific distributions of burdens and benefits, and peculiar results of the discipline as practiced.
I think, for instance, of the odd result Professor McWhorter highlights and analyzes, that is, that autonomy is plucked from the liberal tradition and its Kantian interpretation is discarded within this discipline, which continually suggests that to be autonomous means that one chooses “courses of action that minimize risk to oneself or one’s children” (see McWhorter’s commentary). Ultimately, I follow Foucault in describing biopolitics as a governance strategy that attempts to mediate between the individual and the population in such a way that population-level phenomena are made predictable. To do so, biopolitical governance must attempt to calculate and manage risk–that is, quantify, evaluate, and mitigate it.
The specific risk that bioethics attempts to quantify, evaluate, and mitigate is, I argue, the risk of disability. Because risk and disability are enmeshed by the claim that disability simply is risk, individual persons within bioethics discourse become risky disabled subjects and subjects at risk of disability; these roles can be simultaneous. This treatment of disability creates and directs risk rather than identifying and mitigating risk. Indeed, this is a description of one facet of the “racism against the abnormal” that Professor Tremain describes. The death drive or expression of sovereign power at the heart of bioethics as biopolitics is targeted squarely at disability. In this way, I claim, bioethics as biopolitics produces risk and distributes it (unevenly) in the name of risk management.
Foucault notes that under biopower, death takes multiple forms: “When I say ‘killing,’ I obviously do not mean simply murder as such, but also every form of indirect murder: the fact of exposing someone to death, increasing the risk of death for some people, or, quite simply, political death, expulsion, rejection, and so on” (2003, 256). The exposure to death—which within the critique of bioethics in the book is often the strategic refusal of life through reproductive interventions such as genetic selection—is used as a tool within bioethical risk-management strategies.
But, stigma against disabled people is often lethal for already-existing persons, too, as it impacts how disability is viewed and stigmatizes disabled people. When disabled people are murdered, often by their own families, this is often viewed as reasonable or rational, or even something that would have happened anyway, given the risks that disabilities are thought to pose on their own. I go over cases of this in the final chapter of the book (Hall 129-131).
With that overview, I turn now to respond to the primary themes brought forward by the commentators.
(response to Tremain)
Thank you so much, Professor Tremain, for beautifully analyzing Foucault’s work on biopolitics in your commentary. Thank you also for helpfully situating my book within that context and also within the context of feminist philosophy of disability. Professor Tremain’s work on Foucault and bioethics, especially with regard to the social construction of impairment and the construction of impairment in utero, has been a constant reference point in my research. As she notes, I claim that disability is no incidental part of the discourse about enhancement, and therefore no incidental part of bioethics literature more broadly.
Stigmatizing assumptions about disability and the systematic exclusion of disability frame common arguments about quality of life, end of life decision-making, and more. We will not be able to object to problems within these conversations without recentering disability. This is true in philosophy, too. I have so often heard colleagues use the idea of “insanity” to make clear their intuitions about a philosophical subject, or to ground a claim about what a reasonable person would do in a legal context. These intuitions and reasonable person standards are not value-free; indeed, they rely on the exclusion of disability and difference to make sense.
For instance, in philosophical discussions about reason-giving, I have asked what counts as a good reason only to be told that we know, at least, what is not a good reason—that is, a reason an “insane” person would give, since they cannot properly provide an account of their actions. That tells me both that philosophers misunderstand disability and that philosophers misunderstand reason-giving. Tremain notes my argument that: “the very articulation and practice of [deontological, utilitarian, and virtue ethical] values through clinical procedures and the use of technologies, as well as the decision-making procedures that surround these practices effectively generate and configure the values themselves” (Tremain, Commentary).
So it is in philosophy, as well. The way philosophy is practiced is not inert or value-neutral; indeed, the practice of philosophy will determine what sorts of ideas we count as value-neutral. As Professor Tremain has shown again and again in her work, philosophy routinely re-inscribes the ableist status quo.
To build on Professor Tremain’s remarks, ableist ideas and explanations are commonplace in introductory philosophical texts, much as the assumption that disability is worse than death is commonplace in introductory bioethical texts. Feminists must deal with these issues head on. As feminists, we must deal with stubborn refusals by philosophers and bioethicists to consider disabled lives to be lives of value. If we do not do this, we will not change the circumstances in philosophy which systematically exclude disabled philosophers from academic positions. Thank you, Shelley, for all your work on these matters, including the interviews you conduct on the Discrimination and Disadvantage blog.
Autonomy, Vulnerability, and Relational Autonomy
(response to Dryden)
I thank Professor Dryden for pointing out how crucial it is to disregard and disobey the assumption that autonomy and vulnerability are antithetical. She is precisely right—in the course of objecting to the particular way that autonomy appears within bioethics, I need not throw out the recognition that autonomy and vulnerability wonderfully co-exist or could even be viewed as co-extensive. As Professor Dryden notes, I reference in passing the work of Diana Meyers, who suggests that selfhood is fundamentally relational (2005). Her work can be used to pick apart the portrait of autonomy that causes medical professionals and bioethicists to reference ideas like “second-order autonomy” when they mean to say that someone made a decision with guidance from another person. This is a hopelessly tortured view of autonomy. It’s much clearer to think as Professor Dryden does, that the messiness of our bodies and relationships “beautifully aligns with the messiness of our freedom!” (Dryden, Commentary).
In future work, I plan to use self-determination as a better way to think about autonomy; as Professor Dryden argues, “the self” in this construction is “socially and relationally constituted” and does not build values in a vacuum. Just as I have argued that the practice of bioethics establishes our values, not the other way around, our relationships establish our values. They do not impede what we would have done otherwise, alone.
Relational autonomy therefore refigures our sense of what counts as risk. To object to the transhumanists’ “arid dream” of control, we can pull from the fact that relational autonomy does not promise control. Instead, as she suggests, relational autonomy can focus on the cultivation of capacity with help from others. Thank you, Jane, for that description. I follow you here and have a renewed sense of the urgency of taking back the notion of autonomy from its transhumanist stranglehold. As I note in the book, mastery and autonomy have been twinned, but we can work to untangle them. I return to Jane’s commentary, again, below.
Genealogy, Liberalism, Personhood
(response to McWhorter)
These matters connect with Professor McWhorter’s thinking on the absurd view of autonomy common to the literature I critique. As she writes, “we all depend on others for crucial aspects of our well-being”, which makes the transhumanist claim that everyone should “have” autonomy in order to get well-being even more suspect than I lay out. In agreement with Professor Dryden, she writes this wonderful line: “Autonomy in no way cancels out the perennial perils of embodiment. Only death can do that” (McWhorter, Commentary).
I pose Chapter 3 as a Foucauldian “genealogy” of enhancement. Professor McWhorter points out that, because I find that transhumanist thinking is continuous with earlier eugenic and enhancement discourses (I begin with the Victorian era), this is not a genealogy: “It does not so much destabilize a concept or institution that has been taken to be inevitable or unquestionably legitimate as it discredits a discourse that disavows its own political past” (McWhorter, Commentary). Instead, she suggests, Chapter 3 would be better posed as an ethical argument against transhumanism. That is, since it is right to object to eugenics, it is right to object to transhumanism. I do believe she is correct in this critique, and I thank her for it. I will, however, offer reasons to think that this sort of history of transhumanist thinking could be rewritten as a genealogical study, with some work.
Bioethicist John Harris claimed that enhancements are always about making one better, and better is always good (2011). This suggests that “better” and “enhancement” are taken to be obvious or natural, resistant to history and context. But, in Chapter 3, I show that what counts as better and worse is changeable, political, and contingent. Indeed, I claim that enhancement must be considered in and through material conditions and history. Perhaps I could make moves in future work to strengthen the connection of these arguments to genealogical analysis. Yet, it may be more productive to engage a genealogy of risk itself; as in the case of what counts as “better”, risk is taken to be obvious, natural, and resistant to history and context.
But as Professor Tremain points out in her commentary, “risk—along with its cohorts, chance and probability—is an historical artefact that has been brought into being by techniques of statistical calculation, discourses on racial purity, and technologies of normalization” (Tremain, Commentary). I appreciate the important reminder of what genealogy sets out to do–unsettle what is taken as natural and describe its history, reversals, jolts, and all–and suggestions for how to think more carefully about risk and enhancement discourses as artefacts. Thank you to both Professor Tremain and Professor McWhorter for this impetus to work on a genealogy of risk itself.
Professor McWhorter draws out the theme of liberalism, and asks that I link my work in the book to larger political questions and constructions of masculinity. Indeed this was the original plan for the book—I hoped to link liberalism and bioethics together as two locations where disability is constructed and maintained as risk and where choice is valorized and made a requirement. As I have described bioethics discourse, the responsible medical subject is the normal subject who chooses against risk. This normal subject is set up against the risky embodiment of others; these others are viewed as subject to chance and are seen as threats to the entire community. The responsible medical subject becomes the responsible citizen who chooses to manage that chance.
This notion of responsible citizenship can certainly be fruitfully applied to political questions. I think especially of the commentary on education made by the new US Secretary for Education Betsy DeVos, who called HBCUs “pioneers of school choice.” She also, in pushing for legislation to support the voucher system approach to education, has compared the issue to the “disruption” of Uber and Lyft for taxi service (Douglas-Gabriel and Jan 2017). This is similar to remarks made by Jeb Bush in 2012: “Everywhere in our lives, we get the chance to choose. Go down any supermarket aisle—you’ll find an incredible selection of milk. You can get whole milk, 2 percent milk, low-fat milk or skim milk. Organic milk and milk with extra Vitamin D. There’s flavored milk—chocolate, strawberry or vanilla—and it doesn’t even taste like milk. They even make milk for people who can’t drink milk. Shouldn’t parents have that kind of choice in schools?” (Strauss 2015).
This talk of choice in the context of revived discussion among GOP leadership about the elimination of the national free lunch program is especially anger-provoking. Apparently, it’s responsible to choose, but no one is responsible for providing people with genuine options or the necessary support to take advantage of those options.
For Foucault, the biopolitical logic of racism is grounded in the idea that “if you want to live, the other must die” (2003, 255). More specifically, the logic runs as follows: “the more inferior species die out, the more abnormal individuals are eliminated, the fewer degenerates there will be in the species as a whole, and the more I—as species rather than individual—can live, the stronger I will be, the more vigorous I will be. I will be able to proliferate” (255). This connects well with Professor McWhorter’s political analysis of winners and losers–to win within what we might call the bio-liberal landscape, the successful bio-liberal subject will beat out other subjects; their win will find meaning in someone else’s loss. We need to consider the constant talk of “winning” in the US political climate and elsewhere on these terms.
With regard to political liberalism, I will make one further remark. The inclusion of persons with disabilities in liberal concepts of citizenship and community is often constructed in a hierarchical fashion which necessarily denigrates persons with disabilities. For instance, in one liberal scheme which places reciprocity and exchange first and foremost, the contribution of a person with disabilities is always seen as less valuable than the contribution of persons who embody the norm (Hartley 2009). The interpretation of reciprocity in a liberal context as an endemically asymmetrical experience only for those persons with cognitive difference contributes to a false binary between the abled and disabled body. Thank you very much, Ladelle, for your thoughtful commentary and help in thinking through these political issues.
(response to Clune-Taylor)
I turn now to Professor Clune-Taylor’s helpful and rigorous demonstration of transhumanists’ misunderstanding of evolution. I really enjoyed it and learned a lot from it. Treatment of this issue would have benefitted my argument enormously, as you point out, especially with regard to my analysis of the genetic determinism at the heart of the transhumanist account. It seems to me that, on the basis of her remarks, transhumanists make at least two major mistakes: looking backward, they engage the naturalistic fallacy in assuming that evolution is normative; looking forward, they engage in unsupported “speculation” with regard to future conditions and what traits will be of value in that context. Further, they massively enlarge the scope of problematic traits to include those all bodies, but evolution itself does not provide those cues. Indeed, insofar as transhumanists themselves determine what counts as impairment (based on, even, the desire for what they consider a more politically just future), they implicitly acknowledge that impairment is socially constructed. Wow!
As for the questions about risk that Professor Clune-Taylor raises at the end of her commentary, I want to say a bit about my current research. This will also connect to the remarks about risk made by each of the other panelists. The question of how to share responsibility for risk, rather than individually, which Professor Clune-Taylor principally draws out, is just what I have been thinking about.
With a grant from my institution, Stetson University, I will visit the Centers for Disease Control in the summer of 2017 to better understand risk communication strategies in cases of viral illness such as Ebola and Zika. Risk communication, here, can put persons at significant risk; I see this as very similar to the ways in which risk communication in genetic counseling situations and the interpretation of risk more generally in bioethics operates. With regard to Ebola, risk attaches to West African subjects; with regard to Zika, risk is equated with the potential to bear a disabled child. The women who might bear these children are asked to do the impossible; women without access to birth control in Central America were told by public health officials they must not get pregnant for a period of multiple years.
I am interested in patterns and instances of the individualization of risk in risk communication; these communications often, it seems to me, imply that risks are not socio-politically conditioned. Living in Florida in the middle of the Zika panic, I’ve often encountered signs that say: “Don’t get bitten by a mosquito.” These were, for instance, posted throughout my academic building accompanied by an image of a woman in a long-sleeved shirt. I’ve seen similar warning signs at airports and at Epcot. To me, that kind of message typifies the nonsense risk-management strategies that proliferate with regard to viral illnesses and with regard to the risks of embodiment more generally.
As Dianna Taylor reminded me at the philoSOPHIA conference, discourses like this can be considered “productive failures” (to use Foucault’s concept), because while they do not accomplish what they set out to do (reasonably protect women from mosquito bites) they do effectively individualize responsibility for risk.
These matters remind me of Rebecca Kukla’s interview with 3:AM Magazine(“The Relentless Naturalist,” 2013). She commented upon California legislation Prop 65: “…what is interesting about Proposition 65 is not the published list of chemicals. It’s the reproductive risk warnings that it requires be affixed to every single building or product that hasn’t been proven to be free of all the 750-plus chemicals on the list. In effect, pretty much all public spaces and almost all products in California end up with a Prop 65 warning, which just says that the thing or place may cause reproductive harm” (ibid.). Kukla wondered what one was supposed to do with the supplied information, and noted that it does nothing to deal with how risk is undergirded structurally, but rather individualizes it. Like Kukla, I believe there is something very objectionable in risk communication that is ripe for political and ethical analysis.
Public health is so often an issue of the built environment, not an issue of individual choice. In response to Professor Clune-Taylor’s question about sharing responsibility for risk, let’s re-center public health issues, one by one, on the built environment—infrastructure for water in cities and lead levels in our drinking water, toxic waste dumps and cancer rates, food deserts and obesity, bad environmental policy that drives up mosquito populations and viral illness, bad economic policy that creates poverty, and more. I do indeed want to share responsibility for risk politically and perhaps public health studies is the place to start. Thank you, Catherine, for your push in that direction.
I want to treat another issue raised by both Professor Clune-Taylor and Professor Dryden. This is a question about receiving care, and the space needed for cure. Professor Clune-Taylor says: “It seems difficult to assert the constitution of impairment and justify access to care for those who seek forms of medical normalization or forms of accommodation from bureaucratic systems that demand one be diagnosably sick” (Clune-Taylor, Commentary). She argues that asserting the “sociopolitical constitution of both disability and impairment” is “politically risky” (ibid.). Meanwhile, Professor Dryden says, in reference to the work of Eli Clare: “The logic of cure is deeply dangerous, pernicious. But that does not mean there is no room for cure” (Dryden, Commentary). Although cure does not, as Clare argues, “give us justice,” I agree that there must be room to not just receive care but to demand it. We must not forget the body (Clare 2017).
I have been thinking lately about strategic essentialism, and wonder whether or not we can refer to a kind of strategic essentialism with regard to the medical model as a tool for demanding care. It seems to me that in focusing on one’s health care needs, including mental health care, we need not actually endorse the DSM or diagnostic categories. These two can be pried apart. We must engage or appear to endorse our “diagnosability,” however, to receive care. This resembles strategic essentialism, and can apply in the context of education and accommodations, too.
As the others on this panel beautifully point out—there’s no such thing as a life without risk—even if one’s body is made up entirely of inorganic materials (including copper, steel, and plastic), as transhumanists dream. But this, of course, is not antithetical to living well.
How can we politically and ethically acknowledge this, and how can we acknowledge it in such a way as to reduce and refuse the special risks posed to those of us whose bodies are wrongly considered to be uniquely risky? These matters are the focus of my current work, and drove the academic interests which led me to write my book, The Bioethics of Enhancement. I’ll end by referencing a relevant line from Sara Ahmed’s recent book, Living a Feminist Life: “there can be nothing more dangerous to a body than the social agreement that that body is dangerous” (2017, 144).
Ahmed, Sara. 2017. Living a Feminist Life. Durham, NC: Duke University Press.
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Clare, Eli. 2017. Brilliant Imperfection: Grappling with Cure. Durham, NC: Duke University Press.
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“The Relentless Naturalist.” Interview with Rebecca Kukla by Richard Marshall. 3:AM Magazine 27 May 2013. Last Accessed June 8 2017: http://www.3ammagazine.com/3am/the-relentless-naturalist/.
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