Disability is often defined as deviation from putative norms of physical, cognitive, or affective function. This definition is normatively laden, causing people with disabilities to be thought of as “different” and treated with pity. We address the predominant theme of this issue on “Disability Identity”: defining and imposing the category of “disability” and attempting to overcome it through medical intervention. The issue culminates in a call for courageous humility as the proper response to encounters with disability, providing medical professionals with (...) the disposition to resist medicine’s inherent drive to fix what is perceived to be broken—that which strays from the norm. We hope that this issue might act as a clarion call to medical professionals to reevaluate how they see and interact with “disability” as a category, and ultimately with people with disabilities, especially with respect to what may be owed to persons with disabilities from society. (shrink)

This chapter considers some epistemic aspects of interactions with those who are believed to be delusional. The chapter makes five main claims: first, for the day-to-day purposes of most individuals, it is helpful to understand delusions as extreme epistemic failures, failures that all are guilty of to some degree. Second, one should be cautious when attributing delusions to others because to call someone delusional can act to discredit them, and this can be especially dangerous when applied to members of oppressed (...) groups. Third, delusional individuals can indeed be wronged by epistemic injustice. Fourth, epistemic responsibility for delusions needs to be extended beyond the individual holding delusional beliefs to the conditions that shape those beliefs. Finally, the virtue of epistemic humility offers several important epistemic benefits in interactions with delusional others. (shrink)

This article takes the rupturing of normative, linear, reproductive time that occurs in the event of miscarriage as a potentially generative philosophical moment—a catalyst to rethink pregnancy aside from the expectation of child-production. Pregnant time is usually imagined as a linear passage toward birth. Accordingly, the one who “miscarries” appears as suspended within an arrested journey that never arrived at its destination, or indeed, as ejected from pregnant time altogether. But here I propose to rethink both pregnancy and miscarriage through (...) the lens of “suspended time”—a theoretical move that shifts the accent from the future as the dominating frame of reference to the lived present. Drawing on work by Kathryn Bond Stockton, Lauren Berlant, Lisa Baraitser, and others, the article explores overlooked temporalities of pregnancy and miscarriage that operate not in the mode of futural projection or futural loss, but rather through present-oriented forms of adjustment and sensing, attachment and intimacy, maintenance and care. By “suspending the future,” then, we can resist the oppositional framing of pregnancy and miscarriage, because if pregnant time is not represented in exclusively future-oriented terms as being-toward-birth, then miscarriage need not be understood as pregnancy's undoing. (shrink)

With David Cooper and others, I argue that it is conceptually and ethically good to broaden the conception of misanthropy beyond that of hatred of humans. However, I hold that not everyone with misanthropic thoughts is a misanthrope. I propose thinking of a misanthrope as one who appraises the moral perception of misanthropy to be appropriate, weighty, and governing of other aspects of one’s moral outlook or character. I conclude that pessimism without misanthropy may be more ethically appropriate for some (...) of us with misanthropic thoughts who wish to reject the identity of a misanthrope. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

This is the prologue to a collection of essays on eugenics and psychiatry.

This paper explores the relationship between eugenics, disability, and dehumanization, with a focus on forms of eugenics beyond Nazi eugenics.

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...) implications for just and equitable healthcare delivery. (shrink)

Eugenics is often referred to in debates on the ethics of reproductive technologies and practices, in relation to the creation of moral boundaries between acceptable and unacceptable technologies, and acceptable and unacceptable uses of these technologies. Historians have argued that twentieth century eugenics cannot be reduced to a uniform set of practices, and that no simple lessons can be drawn from this complex history. Some authors stress the similarities between past eugenics and present reproductive technologies and practices (what I define (...) throughout the paper as ‘the continuity view’) in order to condemn the latter. Others focus on the differences between past and present practices (what I define throughout the paper as ‘the discontinuity view’) in order to defend contemporary reproductive technologies. In this paper, I explore the meanings of the word ‘eugenics’ and the relationship between its past and present uses in terms of contemporary debates on reproductive technologies and practices. I argue that moral disagreement about present technologies originate in divergent views of condemnable and justifiable features of the past. (shrink)

The purpose of this paper is to contribute to the ongoing analyses that aim to confront the problem of marked variation. Negatively marked differences are those natural variations that are used to cleave human beings into different categories (e.g., of disablement, of medicalized pathology, of subnormalcy, or of deviance). The problem of marked variation is: Why are some rather than other variations marked as epistemically or culturally significant or as a diagnostic of pathology, and What is the epistemic background that (...) makes these—rather than other variations—marked as subnormal? For Wilson (2018a), critical examination of the problem of marked variation is central to understanding the epistemology of medicalized pathology that made the history of eugenics possible. My aim is to explore the role marked variation plays in eugenic and other problematic classifications and the inferences they appear to license. I pay particular attention to the normative valuations of marked variations, how these valuations affect the inferences that are made by others about those possessing the variation, and how those possessing the variation perceive themselves. In the final sections, I illustrate this by critically discussing three putative kinship conceptions of race. I rely on these to extend the scope of the puzzle of marked variation from the context of historic and current markings of an individual’s variation as disability in the eugenics movement to historic and current markings for assigning putative racial ascriptions to individuals and groups. Lastly, I suggest that the problem of marked variation is a problem that looms over any epistemic account that is dependent upon sorting or classifying. (shrink)

Annotated bibliography on eugenics and philosophy.

Eugenics is commonly thought of as having endured as science and social movement only until 1945. With the advance of both reproductive and enhancement technologies, however, concern has arisen that eugenics has resurfaced in new forms. In particular, the eugenic potential of the Human Genome Project led to talk of the rise of ‘newgenics’ and of a backdoor to eugenics. This article focuses on such concerns deriving from the practice of prenatal screening and technologies that increase our ability to generate (...) information about the kinds of children we are likely to have. Given individual preferences and social norms concerning what traits are intergenerationally desirable, how should we act and what practices and policies should we endorse or scrutinise? This article will concentrate on key components of eugenic thinking present today and emphasise continuities between the eugenic past and new- genic present in the subhumanisation of people with cognitive or intellectual disabilities. (shrink)

Projects of human improvement take both individual and intergenerational forms. The biosciences provide many technologies, including prenatal screening and the latest gene editing techniques, such as CRISPR, that have been viewed as providing the means to human improvement across generations. But who is fit to furnish the next generation? Historically, eugenics epitomizes the science-based attempt to improve human society through distinguishing kinds of people and then implementing social policies—from immigration restriction to sexual sterilization and euthanasia—that influence and even direct what (...) sorts of people populate our future. Despite recognition of the horrors of the eugenic extremes of the past and of the subhumanizing of those sufficiently below appearance or ability norms to be viewed as “defective” or “unfit”, many people continue to be drawn to strands of eugenic thinking. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

Selection against embryos that are predisposed to develop disabilities is one of the less controversial uses of embryo selection technologies. Many bio-conservatives argue that while the use of ESTs to select for non-disease-related traits, such as height and eye-colour, should be banned, their use to avoid disease and disability should be permitted. Nevertheless, there remains significant opposition, particularly from the disability rights movement, to the use of ESTs to select against disability. In this article we examine whether and why the (...) state could be justified in restricting the use of ESTs to select against disability. We first outline the challenge posed by proponents of ‘liberal eugenics’. Liberal eugenicists challenge those who defend restrictions on the use of ESTs to show why the use of these technologies would create a harm of the type and magnitude required to justify coercive measures. We argue that this challenge could be met by adverting to the risk of harms to future persons that would result from a loss of certain forms of cognitive diversity. We suggest that this risk establishes a pro tanto case for restricting selection against some disabilities, including dyslexia and Asperger's syndrome. (shrink)

CRISPR-Cas9 genome editing can and has altered human genomes, bringing bioethical debates about this capability to the forefront of philosophical and policy considerations. Here, I consider the underexplored implications of CRISPR-Cas9 gene drives for heritable human genome editing. Modification gene drives applied to heritable human genome editing would introduce a novel form of involuntary eugenic practice that I term guerrilla eugenics. Once introduced into a genome, stealth genetic editing by a gene drive genetic element would occur each subsequent generation irrespective (...) of whether reproductive partners consent to it and irrespective of whether the genetic change confers any benefit. By overriding the ability to ‘opt in’ to genome editing, gene drives compromise the autonomy of carrier individuals and their reproductive partners to choose to use or avoid genome editing and impose additional burdens on those who hope to ‘opt out’ of further genome editing. High incidence of an initially rare gene drive in small human communities could occur within 200 years, with evolutionary fixation globally in a timeframe that is thousands of times sooner than achievable by non-drive germline editing. Following any introduction of heritable gene drives into human genomes, practices intended for surveillance or reversal also create fundamental ethical problems. Current policy guidelines do not comment explicitly on gene drives in humans. These considerations motivate an explicit moratorium as being warranted on gene drive development in heritable human genome editing. (shrink)

One prominent argument against the use of preimplantation genetic diagnosis to select a deaf embryo with the aim of creating a deaf child is that it violates the child’s right to an open future. This paper challenges the open future argument against deaf embryo selection, criticizing its major premise that deafness limits a child’s opportunity range in ways that compromise their future autonomy. I argue that this premise is not justified and is supported by negative presumptions about deaf embodiments that (...) are suspect and in need of further argumentation. First, available interpretations of the open future concept fail to justify the devaluation of deaf traits as inherently autonomy-diminishing. Second, arguing against deaf embryo selection requires demonstrating that a deaf trait generally constrains opportunity ranges independent of social context. But such analyses neglect important social and relational components of autonomy. For these reasons, merely appealing to the child’s right to an open future does not sufficiently support the conclusion that deaf embryo selection is wrong. (shrink)

For centuries, philosophers and theologians debated the meaning of monstrous births. This article describes the debates that took place in the early modern period concerning the origins of monstrous births and examines how they might be relevant to our understanding of disability today. I begin with the central questions that accompanied the birth of conjoined twins in the early 17th century as well as the theological origins of those questions. I then show the shifts that occurred in philosophical debate in (...) the 18th century, which reveal the changing understanding of God’s interaction with creation, as well as the burgeoning medical responses to monstrous births. By reexamining these earlier debates, I claim some of the earlier questions posed by philosophers and theologians have been neglected but remain relevant in bioethics debates concerning how best to consider and treat newborns with certain disabilities. (shrink)

For the last eighteen months, I have worked with a group of disability and health policy researchers. I began this interview-based project trying to learn how these researchers’ disability identities shaped their work. How did their disability standpoint contribute to the liberatory nature of their research? I found that the disability standpoint of these researchers was in fact hard-won and grew not just out of their own disability experiences but out of their connections with the larger disability community. These connections, (...) for the most part, helped researchers come to “claim crip,” and that later influenced their research. (shrink)

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It argues (...) that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable (...) citizenry. In this essay, I outline the logic of inclusive and eugenic world building, define and explain the role of the "normate" in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations. (shrink)

This article studies the response of the US disability community to the prevalent assumption that disabled people do not have a future, in the form of the disability rights movement. It provides an exploratory discussion of the key role played by utopianism in the response. In doing so, the article adds to critical theorizing on the importance of utopia to the oppression of non-dominant groups and to transcending that oppression. I use utopian studies scholarship to interpret the activities leading up (...) to the passing of the Americans with Disabilities Act in 1990 as a minor utopia, characterized by an ambiguous, grounded, and provisional effort to imagine alternative ways of being. I articulate the central role played by a positive vision of disability and disabled people for this inversion of the historically negative relationship between utopia and disability. The article turns to disability activists to show that the movement countered exclusionary utopian approaches by acting as if it had a right to envision and enact a different, better future for all from the perspective of disability and disabled people. (shrink)

This essay explores various philosophical approaches to cognitive disability within feminist philosophy. In doing so, it addresses three broad questions: What positive contributions can feminist philosophy make to the philosophy of cognitive disability? How have feminist philosophers critiqued the presence and absence of cognitive disability in philosophy? And what challenges does cognitive disability pose to feminist philosophy itself? The essay begins with definitions and models of disability and then turns to feminist work on cognitive disability in moral and political philosophy, (...) bioethics, and epistemology. It concludes with some methodological considerations. (shrink)

Feminist scholars have been critical of the expectations placed upon mothers to accomplish a perfect version of motherhood, but have often failed to interrogate the values about normalcy and disability imbedded in modern mothering ideologies. Mothers with disabilities are well positioned to expose the underlying beliefs about normalcy with which all mothers must contend. Drawing from interviews and focus groups conducted with mothers who have physical and sensory disabilities, I explore Deaf/disabled women’s experiences negotiating the scientific motherhood regime. Illuminating a (...) paradox, I argue these women are labeled “risky mothers” under scientific motherhood, which prizes the management of risk and the prevention of disability. Yet, these mothers are simultaneously rendered invisible by inaccessible and inflexible medical practices, and by a consumer market of expert advice which prescribes that mothers inhabit a typical body. These women’s experiences illuminate the normalcy project as a central tenet of scientific motherhood. (shrink)

The US Food and Drug Administration (FDA) is fraught with controversies over the role of values and politics in regulatory science, especially with drugs in the realm of reproductive health. Philosophers and science studies scholars have investigated the ways in which social context shapes medical knowledge through value judgments, and feminist scholars and activists have criticized sexism and injustice in reproductive medicine. Nonetheless, there has been no systematic study of values and gender norms in FDA drug regulation. I focus on (...) three questions about values in regulatory science. First, how have societal values and gender norms shaped the way that the FDA regulates drugs in the realm of reproductive health, specifically with drug labels? Second, what are the ethical, epistemic, and social consequences of these influences on regulation for women and other marginalized groups? Third, which societal values and gender norms ought to influence drug regulation about reproductive health, and how ought this happen? Integrating philosophical analysis with historical archival research and in-depth interviews, I conduct three case studies of drug labeling about reproductive health: (1) the “drug fact” about the mechanism of the morning-after pill; (2) the package inserts for patients about the health risks of oral contraceptives; and (3) the special physician labels made for prescribing drugs to pregnant women. I identify three challenges for the FDA and suggest ways to reduce the influence of sexist values and facilitate feminist alternatives. First, across these cases, I have found that there are many ways in which other concerns in reproductive medicine (such as zygotic life, fetal health, and population control) have devalued women’s health. Second, both knowledge and ignorance xvi about their reproductive health have contributed to women’s oppression, especially poor women and women of color. Finally, by avoiding the epistemic dimensions of ethics, powerful, mostly male parties in medicine (such as doctors, pharmaceutical companies, and religious institutions) have misused “informed consent,” “religious freedom,” and “paternalism” for unethical purposes. For improvement, I suggest extracting sexist values and gender norms from regulatory science that cause epistemic injustices, and I point to success stories for reforming sexism with feminism at the FDA. (shrink)

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life (...) experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre’s Dependent Rational Animals to argue that child suffering can be understood only as a set of absences—absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish. (shrink)

This paper assesses how views of disability and enhancement can combine. It is hard to maintain that disabilities and enhancements are both undesirable. Disability-positive views can combine with support for or opposition to enhancement, but not with the view that enhanced traits reliably increase well-being. It is consistent to hold that disability is bad and enhancement good; the plausibility of this combination depends on whether it is better to have more options and fewer limitations. Understanding these combined positions makes it (...) easier to check for consistency by evaluating positions on disability and enhancement against each other. (shrink)

Eliminating pain is problematic when it comes to caring for people with disabilities or chronic pain. This paper locates the drive to completely eliminate pain as a project of the Enlightenment and contrasts it with the tradition of interpreting suffering throughout the Christian tradition. I introduce Jane Austen’s novel Mansfield Park as a way to continue the tradition of interpretative suffering after the Enlightenment. Using textual analysis of Jane Austen’s Mansfield Park, I demonstrate how the novel’s heroine, Fanny Price, is (...) able to resist the drive to eliminate pain through her contemplative reflection on suffering which allows her to participate in right relationships with others and God. Finally, I offer twenty-first century applications of Mansfield Park by addressing changes we can make in the church and the clinic to understand better the role pain plays in Christian life and community. (shrink)

Childress et al. (2023) argue in favor of “ECMO-DT,” the provision of ECMO indefinitely as “destination therapy” in the ICU for patients who are dependent on the technology to sustain their lives....

Journal of Religious Ethics, Volume 49, Issue 2, Page 358-380, June 2021.

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

With the recent advancements in scientific comprehension of genetics and the decipherment of complex techniques for editing human genomes, liberal eugenics—eugenic ideal premised on the liberal values of autonomy and pluralism that leaves reproductive choices to parents rather than anachronistic statist authoritarian interventions—has inevitably become a polarising conundrum in contemporary liberal societies as to its utility and destructiveness. Focusing on one species of liberal eugenics—namely, genome editing interventions—I contend that liberal eugenics could be harmful—harm herein construed as that which undermines (...) the salient liberal values of equality, autonomy, and pluralism—since it is itself antithetical to the bases of the liberal society. This contention is based upon three premises: first, that individuals are rather seldom rational decision-makers such that leaving all reproductive choices to the whims of individual parents would be immensely counterproductive to future offspring’s right to open future; second, that liberal eugenics—much like its authoritarian antecedent—could intersect with myriad identities, including race, class, sex, disability, and sexual orientation in ways that might exacerbate social divisions, marginalise different groups, and engender homogeneity; and third, that it undermines individual autonomy of the future person as a member of the liberal community, particularly if their capacities and abilities are tailored to fit parents’ specific life projects and putatively reasonable conceptions of the good. The underscored potential malaises of liberal eugenics should, I argue, be discursively negotiated between parents and the state via the development of robust general laws that regulate heritable genome editing interventions to ensure that the welfare of the future persons is prioritised and that the liberal commitment to autonomy is immune to antiliberal perversions. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Sufficientarians face a problem of arbitrariness: why place a sufficiency threshold at any particular point? One response is to seek universal goods to justify a threshold. However, this faces difficulties (despite sincere efforts) by either being too low, or failing to accommodate individuals with significant cognitive disabilities. Some sufficientarians have appealed to individuals’ subjective evaluations of their lives. I build on this idea, considering another individualized threshold: ‘tolerability’. I respond to some traditional challenges to individualistic approaches to justice: ‘expensive’ tastes, (...) and adaptive preferences. Finally, I end by offering some suggestions about how this relates to policymaking. (shrink)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

Reproductive freedom plays a pivotal role in debates on the ethics of procreation. This moral principle protects people’s interests in procreative matters and allows them discretion over whether to have children, the number of children they have and, to a certain extent, the type of children they have. Reproductive freedom’s theoretical and political emphasis on people’s autonomy and well-being is grounded in an individual-centred framework for discussing the ethics of procreation. It protects procreators’ interests and significantly reduces the permissible grounds (...) for interference by third parties. In this article I show that procreative decisions have far-reaching effects on the composition and size of the population. The upshot of considering these effects allows for the appreciation of the inadequacy of a framework that solely considers individual (i.e. procreators’) interests to discuss the ethics of procreation. To address such inadequacy, I assess costs and benefits of past and present proposals to reflect on procreation in such a way as to consider its far-reaching effects. I conclude by arguing that reproductive freedom should be defended as an imperfect but instrumentally necessary tool. This framing would enable those participating in debates on the ethics of procreative decisions to work towards an ethical framework that accounts for the cumulative effects of these decisions. (shrink)

This article probes the philosophical and political significance of the relationships between wheelchair activists and their wheelchairs. Analyzing disability memoirs and the work of a professional wheelchair dancer, I argue that wheelers frequently experience complex relationality and queer kinships with their wheels. By bringing the artistry of disabled writers and dancers into conversation with the notions of human–material relations in the work of Donna Haraway, Jane Bennett, Stacy Alaimo, and Mel Chen, I show how alternative animacies shape wheelers’ conceptions of (...) interdependence and movement. The sensuous pleasure they take in their wheels queers conventional conceptions of how humans should relate to things. New materialist philosophy has increasingly drawn attention to the porous boundaries between the human and material world. But where posthumanist philosophers have largely aimed to dethrone the sovereignty of the human, disability activists use alternative animacies to raise up a devalued and discounted portion of humanity: to emphasize the agency and capacity of those whose lives are often cast as pitiable and powerless, to express a queer feminist disability culture and politics, and to claim the transgressive vitality and vibrant artistry of life with disability. (shrink)

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum’s (...) special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. However, the (...) social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest (...) to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing. (shrink)

The Ethics of the New Eugenics, edited by Calum MacKellar and Christopher Bechtel ,An introductory “Note on the Text” states: “The research on which this book is based was commissioned by the Scottish Council on Human Bioethics. It is the result of the collective work of many individuals at the Scottish Council on Human Bioethics. Initial drafting and subsequent editing was the work of Calum MacKellar and Christopher Bechtel, as agreed to by the Ethics Committee of the Scottish Council on (...) Human Bioethics. They were appointed principal editors by the Council.” is a useful introductory reference book for those interested in the use of genetic technologies to improve the human species. MacKellar is the director of research for the Scottish Council on Human Bioethics and a visiting professor of bioethics at St. Mary’s University College London, and Bechtel is a research fellow at the SCHB. The Scottish Council on Bioethics commissioned and supported research for this volume. .. (shrink)

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess Curtis and Clare Cunningham, (...) an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

This project takes a comprehensive approach to the application of life-value ethics to matters of disability. I overview the philosophical foundation of my approach, life-value ethics, in its different dimensions. I explore the distinction between life-requirements and need-satisfiers. Life-requirements are the fundamental needs shared by all human being whereas need-satisfiers are the tools by which we access our life-requirements in specific circumstances. After exploring this philosophical groundwork, I address the social, medical, and value-neutral models of disability. I support a synthesis (...) of the social and medical models of disability, but I believe that Elizabeth Barnes's value-neutral model in its rejection of the idea that being disabled is necessarily bad helps to overcome the medicalized belief that the only way to fully realize life-value is to eliminate disability. Hence, it is primarily the value-neutral model that I use to show how a life-value approach can address matters of accessibility and accommodation. As a way of demonstrating the merits of a life-value approach, I apply life-value ethics to the recent policies banning single-use plastic straws. Even though plastic straws do not represent the biggest threat to the environment, they are a primary target of environmentalist initiatives to reduce the amount of plastic waste entering our oceans. It can be shown that plastic straws act as need-satisfiers for disabled people with neurological and muscular impairments. In addition, I contend that by using the concept of coherent inclusivity, we can show that making these need-satisfiers accessible to the public will not only avoid causing harm, but will also help to provide alternative need-satisfiers to our ageing population. (shrink)